My name is Kelly and my new job is to Kill Leuk! No, I am not your normal assassin. I am a wife, mother, grandmother, and a probation officer. "Leuk" is short for leukemia. Acute Myelogenous Erythroid Leukemia to be precise. My friend Rhonda named "it" for me. My job now is to destroy this unwanted guest in my body. Leuk was discovered on October 11th, 2014.. A date which was ironically my Grandpa Marvin's birthday. I used to love hearing him say, "I was born on October 11, 1919.I believe Leuk saw an opportunity to take over my body when I was taking two medications to prevent me from contracting HIV. I had to take these meds after I was stuck with a dirty needle while working. I did not know who all had used the needle, or if the drug user even had HIV. The ER doctor told me I had no choice but to take the medications because I was at a high risk for contracting the deadly disease. He presented with a cold and uncaring attitude and made me feel like I deserved to have HIV. As I sat on the hospital bed still wearing all my field gear, I wondered what was going to happen to me. My husband was out of town and I was all alone. My mom wanted to come, but I told her no. I said, "Mom, if you come I will cry. How will that look to others if a PO is crying?" So I sat there alone and pondered my fate.
The beginning of my new life
The first week taking the medicine I felt fine. I continued all my activities and smugly decided I was going to escape any side effects the pharmacist warned me about. He told me the biggest side effect was nausea. I hate throwing up so I sure didn't want that! Pretty soon I no longer wanted my decaf skinny latte's that I always got on Tuesdays and Fridays. The thought of them made me nauseous. Food started tasting funny and nothing sounded good; not even my sugar-free chocolates! I felt extremely nauseous and out of breath. I was in pretty good shape- I could out walk most people and did a lot of hiking, Zumba, and other classes at our local gym. Pretty soon I gasped for air just carrying my gear bag to my car after work. Thirty days later I was finished with the medication but the symtoms just got worse. One day I was driving home and I was praying that God would take the symptoms away and prevent me from getting HIV or HEP C. All of a sudden I felt with the upmost certainty that my fate had been changed forever on July 23, 2014 and my life would never be the same. It was the same feeling I had on February 13, 1997 while taking pictures of my three kids wearing these huge wax lips their grandma Michele sent them. I heard God say, "will you still believe in me and share my love with others if your whole life is changed"? I was scared and confused why I heard/felt that,because at that moment everything was fine with my little family. I confided to my friend Kris that I was worried I had leukemia. 17 years prior, on February 17, 1997, our oldest son Logan was diagnosed with leukemia. He was short of breath and had no energy. I will never forget the day when he told me he felt so weak. I said, "Logan,you just need some exercise, how about walking up to the mailbox"? He came back feeling even more tired. I was starting to understand how he felt. But I kept my worries to myself; I didn't want to sound paranoid. I made an appointment to see my doctor after my vacation.
Patrick was going on a business trip to Seattle and I decided to meet him there after his meeting. We knew we didn't want to stay in Seattle and tried to agree on where to go. I had always wanted to go to Idaho and talked him into going on an unplanned road trip. The first night we drove to Newport, Washington to see our friend Jim. Jim had been trying to talk us into visiting him for years. We were so happy to finally accept his invitation. We had a pleasant evening with Jim and went out to dinner with his family and friends. I was feeling pretty good and put my concerns about my health to rest for the night. When we got back to his house I decided to call it a night. I left the two men upstairs to catch up and climbed into bed feeling exhausted.The next morning I woke up with a sore throat. The timing was terrible! We only had a few days of vacation and I refused to let a sore throat ruin our trip! Besides the sore throat, I was feeling achy and really tired. I asked Patrick to go upstairs and mix me up some salt water to gargle. He came down with a cup of salt mixed with a teeny bit of water. Yuck. I went upstairs to make another cup of salt water and by the time I got up there I could hardly breathe.I could tell that Jim and Patrick were concerned, but I told them I was just overly tired. Patrick and I gathered our belongings and set out for our adventure in Idaho.
The only hotel I had reservations for was for our first night in a small town called "Post Falls". I googled information about Post Falls before we left. The only thing I really discovered was the town boasted having a Buck Knife Factory. That sounded fun and we wanted to check it out. Post Falls is close to Coeur D'Alene, which was a place I had heard about and wanted to visit. Jim suggested we start in Sand Point, Idaho and then drive to Post Falls. Being raised in a small town in Indiana made me appreciate the hometown feeling of Sand Point. There were so many beautiful old buildings and I was eager to walk around the town. We started walking, but it wasn't long before we had to slow our pace down. I was having trouble catching my breath and was frequently stopping to sit. At one point I even sat down in a store we were in. I knew this wasn't good; something was really wrong with me.
A few weeks before we had left we had gotten blood tests done at our local health fair. We hadn't received the results before leaving Alaska. I knew I needed to see those labs. I texted our daughter-in-law, Kelsey, who is in her last year of nursing school. I asked her if she could check our mail to see if the hospital had mailed our results. The results were there and she took a picture of the labs and told me what I already knew- you need to see a doctor. I immediately sent the results to my mother and she called my doctor, who is a family friend. David told her I needed to find the closest emergency room and get a blood transfusion. At that point I knew I needed to tell Patrick my suspicions about what was wrong with me. I wanted him prepared. As we stood on the sidewalk in Sand Point I put my hand on his chest and said, "Honey, there is something you need to know. I want you prepared for the worst. I think I have leukemia or lymphoma." Although the breathing issues were similar to Logan's, I had similar symptoms my friend Kelly had when she was diagnosed with lymphoma. My chest felt like an elephant was sitting on it. Of course he reassured me that I was just having residual effects from the medicine and it was nothing serious. We agreed to check into our hotel, have lunch, and then go to the ER. I called my insurance company to see if there was a preferred hospital I had to go to. They told me any hospital was ok. I looked up hospitals and found one in Coeur D'Alene. I couldn't tell how big it was and I sure didn't know if it was a good hospital or not.
We had a delicious lunch and asked our waitress how to find the hospital. She gave us at least two different paths to take. Listening to her changing her mind on how to get there stressed me out more and I found it even more difficult to breathe. I wondered it I just had some anxiety issue. We finally made it and I signed in. The first thing I told the triage nurse was I had recently been on prophylactic medication and showed her my blood test results. She weighed me and I realized I had lost a few pounds in just a couple of weeks. After I was back in a room they took some more blood from me. I again went through my story of being on the meds and asked the the medical staff if they thought it was related. The ER doctor did some research and found that one of the medicines suppressed the bone marrow. When the results for the blood tests came back we discovered I was even more anemic than two weeks prior. The doctor told me I needed a blood transfusion right away and we needed to figure out where I was bleeding from. Since I was going to be admitted, I sent Patrick back to our hotel for clothes, make-up, and hair supplies! While he was gone I took the opportunity to ask the doctor if he thought I had leukemia. He looked surprised and asked me why I thought that. I told him about Logan and how some of our symtoms were similar. He said, I don't think you have leukemia because your white blood count is normal and so are your platelets. I think you may have an ulcer that's causing you to be anemic." Although an ulcer doesn't sound fun, I preferred that over leukemia! I felt a little more confident that I was going to be okay.I figured I would just walk to my room, but they wheeled the whole bed to my new room, I was thinking, "Wow, this a little overkill- I could have walked!" What I didn't know was they put me on One North wing, which I later discovered was where the cancer patients go.
At this point I was pretty confident everything would be ok. A new doctor came in and told me he needed to figure out where I was losing blood from and they would transfuse me. He mentioned doing either an endoscopy or a colonoscopy. I told him I would take the first option. I figured I would be in and out within a matter of a day or two. After all, I could always follow up with my doctor at home. I sent Patrick back to the hotel to get some sleep. I was confident we would be able to continue our vacation. The next morning the same doctor came in and asked me about Logan. I was surprised he had heard the story I had shared with the ER doctor. I gave him an abbreviated version of our 20 months of Logan's brave battle with Acute Lymphocytic Leukemia. He listened carefully and then said, "I am sorry to tell you this, but we think you have leukemia too." I looked over at Patrick and saw the fear on his face.I knew then my response at that moment and attitude in the future had to be confident, positive, and encouraging to him and others. I calmly asked, " Okay, what steps do we need to take?" I looked at Patrick and said, "It's going to be ok." He burst into tears and hugged me tightly. I felt such love for this man who hurt so badly.
The pain of watching Logan struggle came rushing back. My greatest fear was the pain of my family watching me go through similar treatment as Logan did. I didn't think they could take anymore. It had been sixteen years that month since Logan had died after contracting a fungal infection following an unrelated umbilical cord stem cell transplant. How could we go through this again? The loss from losing Logan is as raw and painful today as it was then.February 17, 1997 was the second worst day of my life. Logan wasn't getting over his "virus"; he was tired, weak and bruised. He had these funny little spots we later learned were called "petechia". I called our family doctor and explained what was going on. He ordered blood tests at our local lab. Logan hated needles! It once took three of us to hold him down for the doctors to stitch his hand. I promised him we would go rent some movies after his blood was drawn if he cooperated.We hadn't been home for very long before Doc Martin called and said "you need to get Logan to Providence right away. I have called Logan's pediatrician and he will meet you there." He gave us no clue about what could be wrong. We met with Dr. Keller and he ordered more blood tests. it wasn't long before he came back and said, "Logan is very sick and needs to go to Seattle and get a bone marrow biopsy. Do you know what I'm saying?" Logan looked at him and said, "I know exactly what you are saying, I'm not stupid!" Our 9 year old son had been praying for a local boy who died after a bone marrow transplant he had for his leukemia.
Seventeen years later it was my turn to be told, "You need a bone marrow biopsy to determine if you have leukemia." I guess the doctor thought it would somehow ease the emotional pain by telling us he thought I had a different type of leukemia than Logan and it wasn't genetic. Maybe it did help. I certainly didn't want to think Logan got sick because I carried some defective gene and he got the disease before me. The biopsy was done right in my room and the doctor made Patrick leave. He said, "I don't need two patients." I didn't want to go through that without him, but I put on a brave front and braced myself. I was no stranger to bone marrow biopsies; Logan had dozens. Only one was done while he was awake and I said never again. It doesn't matter how much they numb you, it hurts! I was determined to be stoic and silent. But at one point I said "Shit, that hurts! It feels like you are using a drill on my hips!" The doctor said, "well actually I kind of am!" I then apologized for cussing. He said, "you handled this so much better than the Marines I have done this on!" A short time later Dr.Mulvey let us know the preliminary report was back and confirmed what we already knew; I had leukemia. I immediately felt at peace and said, "I have a win-win situation. If I die, I can go to Heaven and be with Logan. If I beat this thing, then I can stay here with my family and be a grandma to all those grandchildren I hope to have."
I picked up the phone and broke the news to family- one by one. I had to be strong because if I fell apart so would everyone else.No matter how much I tried to prepare myself before going to the hospital, my head was still spinning with the reality of my diagnosis. A million things were going through my head, but foremost was "what do I need to do to kill this thing?" I never once thought about not doing everything I could do to survive. Later, when things calmed down, I was shocked to realize how badly I wanted to live. When Logan died, Patrick and I both said we wouldn't do treatment if we had cancer because we had no faith in the medical system. 16 years after his death I was ready to slay the monster inside of me. The guilt crept in as I asked myself why I deserved to live when Logan didn't. It didn't seem right that I was fighting so hard. The feelings of failing him came rushing back.
Dr.Mulvey asked us where we wanted to do treatment. Patrick and I looked helplessly at one another. We certainly wanted the best care with the best treatment possible for survival. Could we get that in Alaska? We sure couldn't with Logan- we lived in Seattle most of the 20 months of his battle. But could we really be uprooted again? Dr.Mulvey made it somewhat easy for us; he called the hospitals in Alaska and was told no one could treat my rare type of AML up there. But now what? We absolutely did not want to go back to the city where Logan died. Seattle didn't kill Logan, but the thought of the city brought out bitter feelings. Could we really deal with all those emotions again? For years we hated hospitals. We couldn't step foot in one without feeling the grief hit us like a ton of bricks. Patrick would make every excuse he could not to go. I would put on a brave front, but felt like I was dying inside every time I went to visit someone. We realized for the first time in years we were actually in a hospital and feeling somewhat comfortable. We were impressed with the nurses and everyone seemed to genuinely care about us. Dr.Mulvey told us Kootenai Hospotal was affiliated with the Mayo Clinic and they had a study if we were interested. I looked at Patrick and he nodded affirmatively. We would stay in Coeur D'Alene.We were going to be so far away from everyone we knew. Anticipated loneliness set in.
That night there was a knock at the door. Patrick opened it and I heard a familiar voice. One of Logan's greatest supporters was our friend Gary. Gary lived in Renton, WA when Logan was sick.. He came to the hospital every single day. The support he so freely gave helped us through the worst time of our lives.There stood our faithful friend once again. He had driven six hours from his new home in Arlington, WA. He rushed over to my bed with tears in his eyes and gave me a big, reassuring hug. We were no longer alone.
Family, Friends, and Chemo
It wasn't long before word about my diagnosis spread like wildfire. So many wanted to help In anyway they could. We had plans that first night in Idaho to have dinner with Jan, our former Alaskan neighbor. I called to tell her the news and she graciously offered any help she could and invited friends and family to stay with her while visiting us. It was comforting to know she was in Coeur D'Alene.
Our biggest dilemma was finding an affordable place to live. We put our daughter in charge of researching that. One day she was busy calling about places when a family friend called her. Meghan said, "I can't talk right now, I'm trying to find my parents a place to live." Our friend said, "That's why I'm calling you! My sister has a home in Coeur D'Alene and she wants them to stay there!" We were showered with blessings each day. Family and friends made plans to come and soon they made sure we had everything we needed. Both of us had the full support of our employers. Patrick has worked for E.J. Bartells almost 25 years. When Logan was sick they were a tremendous support and helped us so much. They immediately told Patrick they would help any way they could and he wasn't to worry about work. They insisted he focus on me. My co-workers immediately offered me leave so I could continue getting paid and have insurance. We were overwhelmed with gratitude and thankfulnes. We had an army standing beside us ready to go into battle and fight. We were never going to be alone.
I spent Friday and Saturday night in the hospital and they released me on Sunday. I have no recollection of leaving the hospital. I'm not sure if my brain decided it just couldn't think anymore, or I was emotionally stunned and starting to shut down. All I remember is being at the hotel and waiting to hear from Dr.Mulvey. We had decided to particpate in the study. After all, one more drug working to kill this "thing" was good, right?We got the call we had been waiting for. Dr. Mulvey told me I had been accepted into the study.I cheered and said, "That's so awesome!". There was a brief period of silence and he dryly replied, "I'm glad you are so excited, now get your butt down here now!"We drove to the cancer clinic in Post Falls. It was a surreal experience knowing "I" was the patient and this wasn't going to just go away. We were pleasantly greeted and given a bunch of paperwork to fill out. They put us in a room to speak to us privately. The nurse explained the process and brought in the study nurse to tell us about the pills I would be taking on the study. She expalined that I will have five rounds of chemo and the pills are taken the first three days of each round.I was starting the induction phase on this day. The nurse put a ham sandwich in front of me and said, "you need to eat this or you will get sick." I groaned at the thought of being sick and I sure didn't feel like eating. I took one bite and my appetite returned! I gobbled the sandwich up much to the delight of Patrick and Gary who had been trying to coax me into eating for days! She then handed me the pills. I was to take six pills three times a day for three days. They had to be twelve hours apart and always with food. Chemotherapy had officially begun.
The first day wasn't too bad. I was tired and a little bit nauseous, but overall I was doing okay. On day two I had made note about how I was feeing, "Day 2 of Chemo Pills- I don't feel so well. I'm thankful Patrick and Gary are here to take care of me and I can't wait for Mom, Meghan, and Olivienne to come." On Day 3, I wrote, "I woke up at 0500 sicker than a dog. Yuck. I'm trying not to wake anyone. Mom, Meghan, and Olivienne arrived and I am so blessed. I'm praying for a good day on Meghan's 23rd birthday. God, please give me energy and a day without nausea. I want her to have a good day. I want Olivienne to be comfortable around me and not afraid."
That afternoon I insisted we get out of the house and do something fun.We made it as good of a day as we could celebrating the birth of our youngest child. We were just thankful to be together..Day four- the day of admit was here. Boy was I ever dreading going back to the hospital. I dreaded IV Chemo and being confned to a room. I kept thinking I woud wake up from this bad dream and be back in Alaska. When I got up that morning I was violently ill. I was on my knees in front of the toilet retching and feeling like my insides were going to come out of my mouth. I started to laugh at a memory that came rushing back.We were in Swedish Hospital and Logan wanted to take a bath. I was running his water and he was kneeling in the same position I currently was, vomiting over and over again. I felt helpless knowing there was nothing I could do to stop his pain and discomfort. All of the sudden, he stood up, wiped his mouth, and said, "Is there anything else that needs fixin' ma'am?" I looked at him strangely and said, "What on earth are you talking about?" He responded, "I'm the Naked Plumber ma'am and I'm here to help." At that moment I knew whatever I was going to go through was nothing compared to what Logan went through. I stood up and resolved to be brave and strong like Logan.
Dancing with Tad
By the time we got to the hospital, my resolve was shaken a bit. I was so sick and they told me I needed pain medication before they put my Hickman line in. I have adverse reactions to pain medication. Three things may happen, " I throw up, I hallucinate, or I have nightmares." I can handle hallucinations and nightmares, but remember, I hate throwing up! We finally agreed on a medication and they wheeled me into the procedure room. I was awake when they put in a catheter that went from my arm to my heart. The technicians were joking with me and asked me all kinds of questions about Alaska. I soon became known as the "Alaska Girl". After my line was in, I was wheeled to the room that would become my new temporary home. I was a little nervous about having the Hickman. After one of Logan's many procedures, a technician somehow grabbed a hold of his line and snapped one of the lumens clean off! Logan was so mad. He kept saying, "you broke my line! You broke my line!" I decided to guard mine with my life.
It was time for the IV chemo to begin. They hooked me up to a triple IV pole that allowed for multiple medications or fluids to be given at the same time. I named it Tad because if the pole was going to be hanging out with me for an indeterminate amount of time, it was going to have a name! "Tad Pole" seemed to be an amusing name for such an annoying piece of equipment. Tad followed me everywhere! I couldn't even go to the bathroom alone. It was worse than having little toddlers around. Instead of hearing, "mommy, mommy, mommy", I was hearing beep, beep, beep. I would make him stop temporarily by pushing the silent button, but what I really wanted to do was shoot him with my Glock. However; as annoying as Tad was, he was giving me medication that would hopefully save my life. One of the drugs was given slowly over a period of twenty minutes. The nurse had to sit beside my bed and manually push it into my Hickman line. I was really nervous and decided to listen to the Praise and Worship CD my friend Laura made for me. I put the CD in, closed my eyes, and immersed myself in the music. I felt God's presence and I visualized the medication attacking the cancer cells. I was filled with a feeling of peace.Soon my room was filled with friends and family.
The nurses had to round up extra chairs to hold all of my guests! They were shocked to hear most of the people there had flown from Alaska just to be with me. My friend Pam flew in from California and showered me with gifts. I looked around the room and realized how loved I was. Each visit was a blessing from God. We spent time laughing and rejoicing for the time we had together. Underneath the laughter I sensed the worry and concern my loved ones had for me. It was especially hard on my son and daughter. Although they were very young when Logan was sick, they hadn't forgotten how difficult it was. I could see they were re-living that experience. I saw the fear in their eyes as they wondered if their mom was going to die too.We were anxiously awaiting the results of three marker tests. Dr.Mulvey reassured me that having a "rare" type of AML didn't mean my chance of recovery was necessarily compromised. What mattered most were the results of the markers. The test results slowly came in. The first two tests came back in my favor. We were ecstatic and celebrating! ;It seemed to take forever for the last test to come back.My ANP gave the news: it was negative! I called my family and announced it on FB. We were on top of the world. Leuk had no hold over me and I was going to kick his butt to kingdom come. Dr.Mulvey came in that night and I was telling him we were celebrating the results of the last test. He looked at me compassionately and said, Kelly, we wanted this particular test to be positive." I was crushed. I tried to act like everything was okay, but he had learned to read my emotions by then. He told me to stop worrying- that last test was the least important of all of them. I held back the tears. How would my family and friends cope with this set-back.
From the beginning I was determined to be on "Plan A". Plan A was five rounds of chemo with no complications and then I would go home and resume my normal life.The news about the last marker stopped me cold. I decided I could either live in fear or trust in the Lord. I chose to trust him. I was filled with peace again and resolved to fight even harder. Everyday I would put a mask on, grab Tad, and go for a walk around One North. Usually Mom or Patrick went with me. On the days when I had lots of company we would all go! What a scene to behold- all these people walking down the hall pushing Tad. As fun as that was, there was a cloud hanging over our heads. The anniversary of Logan's death was coming up and I was in the hospital. Sixteen years ago we watched our son take his last breath In a hospital. The pain was just too much to bear. We hurt and we were scared.
It was just after midnight so technically it was October 24th; the anniversary of Logan's death. I was alone and wide awake reliving that last night with him. I called for the nurse to bring me Ativan. Ativan was helpful for nausea, anxiety, and sleep. My nurse, Kristina, came in with the pills and asked me what was wrong. I burst into tears and told her it was the anniversary of Logan's death. We spent well over an hour talking about him. She hugged me with tears streaming down her face. She wiped them away in disbelief and said, "I never cry! What is going on? Maybe I should re-think being an oncology nurse." I laughed and told her she was a human with compassion and it was okay to show it. It was a sleepless night despite the medicine. In the morning every nurse, PA, and doctor who walked into my room acknowledged our loss and showed us compassion. It affirmed we were being treated in the right place. The hospital may not have been as large as MD Anderson, but we were getting excellent care from a caring staff.We were determined to honor Logan on this day. The best way we could do that was for me to try as hard as I could to beat this thing. Thankfully I had an entourage to encourage me. Mom, Dad, Gary, my cousin Holly, and friend Pam took Tad on a walk. Pam, Holly, and I had something special planned to help our troubled mood. We had the song, "I'm an Overcomer" by Mandisa cued up and ready to go. Pam hit the play button and she, Holly, and I started dancing in the hallway. The look on Gary and my parents faces was hysterical. They were shocked. We got lots of stares, but we didn't care. We danced like it was 1999 as we cheered that I WAS an Overcomer and with God's help, would beat this monster inside of me. We danced back to the room to "Eye of a Tiger." Later on we went outside the hospital and made a video of our "I'm an Overcomer" dance. We realized shouldn't quit our day jobs to become dancers, but we had the time of our lives. We were filled with joy. We honored Logan.
I spent my sleepless nights plotting how to prank my nurses. I don't know what came over me as normally I am a nice and serious person! I thought about some of the jokes Logan played on his nurses and doctors. He had this container of something called ""Flarp.When he put his finger in there it sounded like he was passing gas. When one of his nurses came in to hang an IV bag he kept putting his finger in over and over. She exclaimed, Logan!" He laughed hysterically. Another time he asked one of his least favorite doctors if he liked Warheads. The doctor told him he had never tried one. Logan acted all innocent and gave him one. He insisted the doctor try it right then. We went for a walk around the nurses station and Logan kept a close eye on the doctor. He laughed hysterically at the expression on his face when the candy got hot. I came up with my own evil plans. At the beginning of my IV chemo, my nurse Charles was having me print and sign my name each night to make sure my cognitive abilities hadn't been compromised. The second night I wote a different name in different handwriting. I handed it back to Charles and waited for him to notice. His eyes got real big and he looked at me fearfully thinking I had lost it. I laughed and said, "got you!" Another night I hid in the bathroom with a blanket over my head and a duck call in my mouth. When I heard Charles come in I jumped out of the bathroom and blew that duck call. I doubled over laughing as he jumped and yelled. He told me he would be right back after he changed his pants. Logan would have been proud.
Just when things seemed to be going well I developed a strange rash on my back and weird spots on my breasts. Dr.Mulvey declared it to be shingles. All nurses had to wear protective gowns and masks when they came into my room. They didn't want to expose other patients. I was told I could still go on my multiple walks per day, but I had to change into a fresh gown and robe each time. That was a pain, but worth the effort. There was no way I could lie in that bed 24 hours a day. They would have to transfer me to the psych ward because I would totally lose it! They called in a specialist named "Dr. Souvenir." Yes, Mom and I giggled like school girls every time we said his name. Dr.Souvenir announced I didn't have shingles, I was having a reaction to my Hickman and it had to come out. It was a frustrating few days because each doctor and nurse who looked at it had a different opinion. It was to come out immediately, no let's wait and see, get it out now, maybe it's looking better...oh she has a fever lets get it out. Finally it was out and a PICC line had been put in. My strange heart palpitations stopped.
The day I had been dreading arrived. I was washing my hair on Day 14 and a huge clump of hair fell out. I laughed and said, "so it has begun". I put it on a paper towel and showed all my visitors. I was taking this surprisingly well! The same thing happened the next day. My hair was so tangled I had to have my CNA comb through it. I didn't understand why it was tangled and she explained the hair falling out was wrapped around my rooted hair, thus tangling them together. My niece Michelle arrived that morning and I asked her to cut my hair short. She had never cut hair before and was a little nervous. She gave me an adorable cut which I proudly displayed to all my nursing staff and friends.I was hoping to wear that cute style for awhile. However; the next morning another huge amount of hair fell out. Again the tangles were so bad I couldn't comb it myself. I had enough; It was time to shave it. Mom went to buy clippers and I tried to build up courage. I appointed Patrick to do the honors. I felt sorry for him because I knew it was hard on him. He started cutting and clipping. I sat there without saying a word. The tears were streaming down my face and I was angry for being so upset over my hair. I wanted to be brave like Logan was. When his hair started falling out we celebrated by having a shaving party. Casey shaved his head to show support for his brother. Patrick offered to shave his head to support me. It was a sweet gesture, but I like his hair too much. I tried putting on a brave front as I put on the hat Patrick had bought me. I announced I was tired and I silently cried myself to sleep. A few hours later my nurse Valerie woke me up. She is a sweet, tiny little thing who is normally very quiet. She stood beside my bed and said in her best stern voice, "you are getting out of this bed and going for a walk with me!" I did as she commanded and walked out of my room for the first time with no hair.
My brother and his wife arrived the next day. I had been so excited to see them, but now I was self conscious and nervous about their reaction. Mark and Sharmin flew into the room, hugged me, and declared that I had the most perfectly shaped head ever and could totally pull off being bald!They could only spend a few days and were determined to encourage us and take our minds off things. We spent the afternoon playing cards and reminscing about family events. On Halloween they took off and went to the store to find me something to wear. They came back with a huge bag of goodies and preceded to dress me up like I was some mannequin who needed to come to lIfe. It was hilarious to watch them as they pulled one thing after another out of the bag. They would put something on me and then grab the camera. "Quick, take her picture! Okay, now put this on her!" Finally they deemed me appropriately dressed for our walk. I walked out with a pink cowboy hat, huge glasses, Fake beard, and my mask. We were going dancing with Tad. My nurse Andrew saw me and jumped. I certainly surprised him!
November 1st, the day I had been waiting for, had finally arrived. I was being released from jail. I mean hospital. No more being woken up several times to have my temperature taken and no more having my urine measured each day! I could pee and not have to show it to anyone! I was free to do whatever I wanted, or so I thought... My mother and husband watched me like hawks. "It's time to take your temperature, it's time for your nap, it's time for your medicine, it's time to eat." I gave up arguing. I did as I was told and thanked God for my caregivers.When I wanted to go on a walk one of them always went with me. I was extremely loved and cared for. Soon they both needed to go home and take care of things. My friend, Darlene came to stay with me. Darlene is a nurse so they knew they were leaving me in good hands. Darlene took her orders from Mom seriously. She cleaned according to the schedule Mom had instructed and made sure I ate and took my medicine. She had brought me lots of gifts including a biker chick leather hat. She was as eager to dress me up as Mark and Sharmin were. My days revolved around my clinic appointments, blood tests, and transfusions. I alternated between needing red blood cells and platelets. This was my new life. How I longed to be home and back at work. I tried to keep my spirits up, but I felt worthless. I didn't even have the energy to cook a meal for my husband. I no longer had my independence. One thing I wouldn't give up were my walks. No matter how low my hemoglobin got and how hard it was to breathe, I would put on my coat and go for a walk. I wasn't going to give up fighting and I needed to rebuild my strength and stamina.
I wanted to go home for a visit so badly. My medical team would not allow it until my counts came up to a safe level for me to fly. I was neutropenic, meaning I had no immune system to fight off germs. On November 14th my counts were finally at the level they needed to be. My bone marrow biopsy was scheduled for the next day. Meghan and Patrick drove me to the clinic and Meg and I went back to the infusion room. They put us in a private room with a bed and started handing me pills to ease the discomfort. My PA, Megan, came in and numbed me by inserting a large needle filled with medication into my hip. She allowed my Meghan to stay in the room after we reassured her she would be able to handle watching the procedure. Meghan was a great support. She held my hand and said, "Mom, I want you to breathe like I did when I was having Ollie." I chuckled at the role reversal. She became Mom and I did as she instructed. Soon it was over and we left hoping the results would come back showing I was in remission. If I was in remission I could go home for a week. Otherwise I would be back in the hospital getting chemo and plans would be made for a bone marrow transplant.Mom, Dad, and Casey came in the next day and Kirk came the following day. Kelsey was unable to come as she was busy with nursing school. Since we didn't know if I was going to be able to go home we planned to celebrate Thanksgiving in Idaho. Mom and Meghan made a delicious dinner and we celebrated being together. I couldn't help but wonder if this would be my last Thanksgiving. No one said anything, but I knew they were thinking the same thing. On the 17th the kids left and it was just Mom, Dad, Patrick, and I. The house seemed so quiet. No more noise from the pitter patter of our baby's feet.
The next day we had an appointment at the clinic. We were hoping the results of the bone marrow biopsy would be in. The examination rooms are pretty small so usually just one person would go back with me. Patrick had the honors that day. Megan walked into the room and asked where my parents were. I told her they were in the waiting room. She told Patrick to go get them. I was so nervous. Was she going to tell me I wasn't in remission and wanted me to have the extra support? Once everyone was seated Megan told us the results came back and I was in remission. She didn't have the written report yet so it wasn't official, but as far as she was concerned, I was in remission. My tender hearted dad had to wipe his tears. I sat there stunned while Patrick and Mom cheered. He did It! God answered the prayers of my loyal army. I achieved remission after one round of chemo thanks be to God.
Home Sweet Home
After our wonderful news, we began to make plans to go home. I was going to get about ten days of freedom. I asked Megan if I could work while I was home. She looked at me like I was nuts. I quickly told her I would just do three hours a day and I would not go into the field, I would stay in the office. She reluctantly agreed. My co-workers thought I was crazy too! But what no one realized was I needed a normal routine to feel normal. I knew it would only be a few days, but it would be a few days I could pretend not to be sick.The day I had been waiting for arrived! We were on the plane and going home. I was so excited I could hardly contain myself. I was sitting next to a guy who I observed to be quite the jerk before we had even boarded the plane. He was so full of himself and telling these two young men where they needed to go and what they needed to do on their first trip to Alaska. One of his biggest pieces of advice was telling these young men about a famous Alaskan strip club They absolutely had to go to. It was all I could do to keep quiet. When I realized he was going to be my "seat partner" I inwardly groaned. I decided I would just ignore him. He turned to me and asked, "it's obvious something is wrong with you, what do you have?" I guess the hat with no hair underneath clued him in. I told him I had recently been diagnosed with leukemia. He proceeded to tell me about all the members in his family who recently died of cancer. Yep, I was sure feeling relaxed and normal.
We finally landed in Anchorage and collected our luggage. Dad looked at us and said, "who is picking you up"? We evidently didn't communicate well as we thought they were giving us a ride home. Unfortunately Dad had his little two seater at the airport. We decided we would make it work. Since I get extremely car sick we all knew I had to sit in one of the two seats. Mom decided Patrick should drive. So that left my parents to crawl in the little area behind the front two seats. I wish I had taken a picture of them. What they wouldnt do for love!They dropped us off and our dogs attacked me with kisses. Ringo cried like a little baby. His mommy was gone for six weeks and he must have thought I was never coming back to him. I spent the afternoon puttering around the house, cleaning out the refrigerator and doing laundry. I napped on the couch with Ringo curled up at my feet. I woke up to Meghan and Kirk coming In with Olivienne. We were going to get to babysit! I closed my eyes for a moment and pretended everything was normal. I was so happy to be home.
Shortly after my diagnosis, our friend Paul was able to get our car shipped to us for free. We have known Paul for a number of years and he is a wonderful, Christian man. It was a kind and generous thing for him to do. Because my car was in Idaho I had no car to drive while home. My granny offered the use of hers. Due to recent surgery she wasn't driving anyway. I had planned just to relax on Friday and visit with Granny and family. I got a ride to her house and was welcomed with a big hug. Granny and I are very close and it had been hard on both of us to be apart. After visiting with her I decided to drop by the office and let my co-workers know I would be working on Monday. I was greeted with hugs and good wishes for my recovery. Everyone exclaimed at how good I looked in my wig. I was thrilled to be back. At that time I had thought I could go home a week a month and work each time. Unfortunately I later found out that wasn't going to happen. I threw myself a couple parties while I was home. There was an open invitation to all my friends and family to come visit. I was happy I got to see as many people as I did. Unfortunately it was flu season in Alaska, so many had to stay away due to my compromised immune system. It was a great ten days. I loved being at work, I was happy to spend times with my kids, family, and friends, and we spent three glorious nights at our cabin over Thanksgiving.Too soon my furlough was up. It was time to return to jail.... But this time I had a new "cellie"! The wonderful owners of the Idaho house were allowing me to bring Ringo with me! I felt guilty about leaving Chester, but I was allowed one dog and Ringo is my baby. Casey and Kelsey promised to take really good care of Chester and our cat, Oreo. I packed my suitcase and tried to be brave as I said goodbye to my house, animals, family, and friends.
Since I had my echocardiogram and heart ultrasound before we left for home, we could get right down to business. We drove to Post Falls clinic and got my poison pills. I wondered how long I had before it hit me. We had dinner and went to the movies to see "Dumb and Dumber".I started to feel sick just before the movie ended, but didn't say anything to Patrick until it was over. Why worry him?The next day I was feeling okay so we decided to drive to Missoula, Montanta. I was in the mood for a road trip and it's not like we had anything else to do! A big bonus for me was the Cracker Barrel restaurant I was going to get to go to! Patrick drove and I tried to stay awake and see the sights. I confess there were a few times that I dozed off. First stop-Cracker Barrel! We had a nice lunch and I ate most of my food. We then decided to explore the town. Patrick isn't much of a "city guy", but he knows I judge a town by its downtown area, so he humored me and drove around. Patrick loves to find a body of water and dream about the fish that may be in there. We found "Kelly's Landing so of course we had to go! We were eager to explore a trail we found. We started out walking and a short time later I realized it was time to take the poison pills. We swallowed our disappointment and walked back to the car. A short time later I was sick and we headed back to Idaho
The next day I was really sick and exhausted, but I was determined to go back to Newport, WA to see Jim. Ringo and I took a long walk in the woods as soon as we got there. I tried visiting with Jim after my walk, but I was so tired. I went downstairs and fell asleep on his couch. What a load of fun I was! Patrick woke me up, I said goodbye to Jim and off we went. The next day was Day 4- hospital admit.I was supposed to be at the hospital early in the morning to get my PICC line put in. Patrick was sleeping soundly and I didn't want to wake him. I was feeling pretty good so I decided just to walk the 1.5 miles. I left my suitcase for him to bring over later. I knew he would be not be pleased with my decision, but it was a valid stand for my independence. They had a hard time getting the PICC line in. My veins kept collapsing. They hooked me up to the IV chemo and I felt sick again. Thank goodness for anti-nausea meds! When Patrick arrived I had to endure a thirty minute lecture about walking to the hospital alone. He loves me...
Day Five- I walked 60 minutes, did 45 squats, 40 wall push-ups, and 60 arm raises with weights. I was not going to let the poison or Leuk win! Mom and our friend Gary were both there and it was just one big party! Well in between naps anyway. I wasn't sleeping at night because there was an elderly man across the hall yelling and crying all night long. He was scared and all alone. I wanted to visit him but he possibly had MRSA so there was no way I could go into his room. I wrote him a long letter of encouragement and one of the staff members read it to him. The yelling didn't stop so I broke down and asked to be moved to a new room. Lucky for me I got the remodeled room! It was the nicest room I had been in on One North.
Patrick and Gary brought Ringo to the hospital to see me. He wasn't allowed past the entry way so Tad and I walked down the hall. When Ringo saw me he started jumping up and down and crying. The poor dog had to be so confused. There was a couple and another lady at the door and they had observed Ringo's reaction when he saw me. They introduced themselves. Gene, his wife Leslie, and his sister Kathy had been visiting their mother. We got to talking about Alaska and they wrote down their number and asked us to call if we needed anything at all. The next day they came to see me. They brought a huge tray of goodies, treats for Ringo, and a Wal-Mart gift card! We were amazed at the kindness of strangers. A friend of mine who is a PO in Dillingham, Alaska had asked a friend of his, Reeva, to come visit me. Reeva had never met me, but here she came with a friend and brought me an artificial Christmas tree and loaned me her I-Pod and earphones. We felt loved and blessed. I believe God sends people to those who are in need of encouragement and comfort.
Patrick left for home on the 7th and I later found out I got to leave that night! I was excited to get out of there. Casey sent me a text that really encouraged me. He told me how proud he was of me and encouraged me to continue the fight. Mom and I finally got to leave the hospital about 9 pm I think it was. There was no way I was staying another night. I couldn't wait to escape
The next day I was feeling very weak. I had an appointment to see Jo in the Coeur d'Alene clinic. I curled up in a chair in the waiting room. The CNA saw me and took me back to a room.She brought me a pillow and a blanket and I stretched out on the examination table. Jo took one look at me and said, "you are going back into the hospital." I yelled, "No, please, no I will be fine!" She sent me upstairs to the infusion room and they pumped me full of fluids. It didn't make a difference. The next day I felt the same. On top of it all, my arm where the PICC line was inserted was bruised and swollen. It had to come out. I had no choice but to go back to the hospital. They tried to wheel me over in a wheelchair, but I refused. If I had to go back I would go on my terms: ;I hadn't lost my stubborn streak. I had never let them wheel me anywhere while in the hospital. During my first hospital stay they showed up with a gurney to take me to X-ray. I threw a fit and Casey told me I was acting like Olivienne. Okay, maybe I was a little stubborn, but I wasn't going to give in to Leuk! I would fight him as hard as I could.
My medical team was concerned I had a blood clot in my arm from the PICC. Ironically while I was being checked for that, my little cousin Chelsey was in intensive care in an Anchorage hospital for a blood clot in her leg. I thought about her constantly and asked my faithful warriors to pray for her too. It was so hard to be so far away in separate hospitals for the same thing. I felt so bad for my Granny. I knew she was so worried about both of her granddaughters. After two days and a CT of my arm they didn't see a clot and released me. Chelsey remained in the hospital and I felt guilty for being able to leave when she couldn't.Two days later my arm was still the same. My PA, Megan, sent me to the hospital for an ultrasound. I was afraid I would be re-admitted. She later called me and told me they did find a clot, but it was small and they weren't worried. I escaped incarceration! Besides the good news about the clot, she told me the Mayo Clinic had finally responded to the E-consult; I did not need a transplant! Hallelujah, thank you, Lord. It was one thing I had been absolutely terrified about.As mentioned previously, Logan had a transplant and it was a terrible process. We watched him suffer on a daily basis and I didn't want to go through that. After all he went through he succumbed to a fungal infection. I figured the same thing would happen to me. I was glad to hear Plan A was going to work.
The next day Mom and I drove to Cheney, WA to go to a live nativity event with my friend Faith. It was a beautiful event and we were glad to get out of the house and away from medical facilities. Despite the fun time with Mom and friends, I was lamenting the realization I was not in Alaska attending a retirement party we had planned to go to for the last year. I had been so excited about it and was sad Patrick was there without me. He called me later and told me I was missed by everyone. I just wanted to go home.
Family Visits, Transfusions, Christmas, and New Years
My dad was coming to see me and I was so excited! I noticed a bunch of bruises on my legs the morning he was to arrive. I figured I may be in need of some platelets, but I felt good. When I was brushing my teeth I noticed these weird black marks on my tongue and the inside of my cheeks. They looked like blood blisters. I called the clinic and they told me Jo would look at it at my scheduled appointment that day. Mom and I had a bet on what my platelet level was. I still felt well so I went on a long walk with Ringo. Mom needed to pick Dad up from the airport. I missed the text Dad sent me telling me they would be back in time to drive me to my appointment. I was still full of energy so I decided to walk the 1.5 miles to the clinic. I had been walking about 15 minutes when I realized that probably wasn't the best idea I had ever had. I was really out of breath and had to keep stopping to rest. Dad called me to ask me where I was. I had taken a different path and couldn't give very good directions. I assured him I was fine, but inside I wasn't so sure if I was going to make it there. I was almost there and decided to cross at a busy intersection because I didnt feel like walking another 50 feet to the crosswalk. I ended up utilizing more energy running across the street before I got ran over.
When I got to the door there were my parents waiting for me with their arms crossed and disapproval written all over their faces. Dad said, "I don't know whether to spank you or hug You! I told him my platelets were probably low so he better just hug me. I had to listen to the parental lecture for several minutes. It is nice to be loved.I had my blood drawn and then we waited for the results. When Jo walked in I stuck my tongue out at her and asked her what the heck was wrong with me. She laughed and said, "you need platelets immediately, you are down to 3,000." The normal range for platelets is 150,000-300.000. I was dangerously low. On top of that my hemoglobin was extremely low. She told me I would likely need red blood cells the following day. Walking over four miles that day may not have been the wisest thing to do, but by gosh I did it! The next day Patrick arrived in time for my red blood cell transfusion.
Since Mom and Dad were leaving before Christmas, we decided to have an early Christmas dinner. Mom made a delicious dinner of ham and scalloped potatoes and we invited our friend Jan over. For the first time in our entire married lives we were going to be alone on Christmas Day. On the 18th, we dropped Mom and Dad off at the Holiday Lights Cruise. They had a special night planned for them by their grandchildren. Meghan and Kirk bought them tickets for the cruise and Casey and Kelsey paid for them to stay in a B& B close by. With all the traveling back and forth, along with their insane schedule at home, they were overdue for a break. I was happy they were going to get some time alone.I wanted to get some Christmas shopping done even though my counts weren't sufficient to fight off infections. We certainly weren't able to do much purchasing this year, but there were a few things I wanted to get. While Patrick was driving I turned my head and pretended to be looking out the window. I had tears streaming down my face and I felt an overwhelming feeling of sadness and despair. I was sure this was going to be my last Christmas. I wondered if he would get remarried and if he would still love me even with a new wife. Would my children tell their children about me? Would the kids even miss someone they never got to know?;He parked the car and I quickly wiped my tears and put on a happy face. I was tired and worn out, but I refused to show how badly I felt physically and emotionally.
The next night I had two disturbing dreams of abandoning Logan. I assume they had something to do with the guilt that I have because he died and I am trying to live. For years I would have welcomed death because the pain of losing a child is so debilitating. But I had a renewed desire to remain here with my family. My work isn't over; there are so many people I want to help. I want to be a good mother to my children and I want to be the best Grammie I can be to Olivienne and my future grandchildren. I want to be married to the man I love and who has stood beside me all these years. I didn't want my parents, grandma, and family to suffer any more losses. Besides the emotional pain I was experiencing, I felt terrible physically. I started running a fever . It would go up, then down, and back up again. It never reached the point where I had to be admitted and I was thankful for that. I wondered if this was ever going to end. Mom left on Christmas Eve and Dad had left a couple days prior. I wasn't feeling well so I stayed home while Patrick took her to the airport in Spokane. I didn't tell either one that I was running a fever again. I texted Casey and Mindy and swore them to secrecy. I guess I thought if no one knew it wouldn't go up. Casey told me he would be praying hard that it would go down. Mindy kept telling me I needed to call my doctor. For hours it would creep up and then hold steady. I finally called the on-call doctor, Dr.Kim , and asked him if I could just take some Tylenol and he agreed. When I told Patrick about taking Tylenol he lectured me about "doctor shopping". Dr.Mulvey had warned me not to mask my symptoms by taking Tylenol. I didn't care; I was now fever free and not going to be in the hospital on Christmas Day.
On Christmas Day I wasn't feeling that great, but as the day went on I felt better. We took Ringo for a walk. I saw people climbing Tubbs Hill and I declared we were going to do that! Patrick tried to discourage me. He knows how competitive I am and was worried I would be disappointed it I didn't make it up. I assured him I would be okay with turning around if I needed to. I had to stop several times due to breathing issues, but we made it to the end of the trail! Granted we stayed on the main trail and didn't do a lot of climbing, but I did it! Success was mine. Die Leuk Die!
We had the pleasure of Meghan and Olivienne's company from the 26th-30th. How wonderful it was to see them both! I am so grateful that Meghan is willing to come with the baby each month. Olivienne sleeps about ten hours each night when home. While here, she keeps her momma up most nights. It's a huge sacrifice for Meghan and I appreciate it so much. Since I am an early riser, Ollie and I settled into a routine. She would whimper early in the morning and Grammie would rush in and pick her up. It was several days of being entertained by Ollie. Too soon the trip ended and we took them to the airport. It was so hard to say goodbye. I cried all the way back to Coeur d'Alene. How could I be a part of Ollie's life when I could only see her one week each month? My only consolation was realizing she did remember me each time.
As the year was coming to a close I reflected on my many blessings. Despite being diagnosed with leukemia, having multiple transfusions, strange rashes, and nausea from treatment, my life was good. We had been blessed by so many people. We had many visitors from people we knew who were going to be in the area and they took the time to see us. Some came specifically to see us. Each visit was a gift to me; I was loved. The blessings were abundant. We had been blessed with meals from a local church group, our car was shipped here for free, we were offered a beautiful house to stay in, our employers and co-workers were being amazing, and my dog got to come! In the darkness of the storm, I saw the light of Jesus shining through so many people. It's a humbling experience to have to rely on others, but God orchestrated it all.
I was supposed to start Round Three Chemo on the 30th of December. I had begged my medical team to let me start on the 2nd so I wasn't sick over New Year's Eve and admitted to the hospital on the 1st. On the 30th I had to get my labs done. I was still neutropenic and my platelets were still low so I couldn't have started anyway. I wasn't concerned as I was sure they would be up by Friday.
New Year's Eve was similar to what we experienced in Alaska; I fell asleep early. I was hoping it would be different this year! I woke up just before midnight and watched the firework display from our front window. What mattered most was I was alive, out of the hospital, and we were together. The next day I wanted to go on a road trip; this time to Canada! We grabbed our passports, camera,and dog and headed out. It took us about an hour and a half to reach the border. The Border Patrol Officer asked where we were from. Patrick replied that we were from Coeur d'Alene. He then asked why we were driving a car with Alaska plates. Patrick explained we were really from Alaska, but temporarily living in Coeir d'Alene. I realized he would never say I was being treated for leukemia when someone asked why we were in Idaho. I think he wanted to keep that to himself. If he didn't say it out loud, it wasn't true. My heart hurt for him.The officer continued to ask questions. "What's your destination in Canada? What will you be doing? How long will you be here? Patrick's reply was, " We don't know where we are going to go, not sure what we are going to do, and probably will be here for a couple of hours". The Border Patrol Officer looked at us in disbelief as he said, "You are only staying a couple of hours? Why?" Patrick shrugged and replied that we were just out for a drive. I hung my head and thought, " He's either going to arrest us because he thinks we are drug dealers, or he's going to tell us to turn around and go back to Idaho." To my surprise he waved us through. Our next carefree adventure had begun. I pretended that we were just on vacation and out for an adventure. I tried not to think about starting chemo the next day and being sick. Today we were just a normal couple out for a short drive in Canada. We decided to turn on the road towards Creston. The terrain looked similar to Alaska and we felt at home. We arrived in Creston about 45 minutes later. It looked like a ghost town. Most of the shops were closed and there were hardly any people strolling about. Of course! It was New Year's Day and most places were closed. I didn't think that one out very well. We found a hotel that had a pub inside. At least we could have food! We had a nice lunch and then drove around a bit. Soon it was time to head back to the border. We saw a sign in Creston that said, "This way to the USA border". We thought about taking it, but that wasn't the way we came and we weren't sure where we would end up. Besides I had seen a couple of cool bridges I wanted to take pictures of. We headed back the way we had come. When we got to the border, it was a repeat of our earlier experience. This officer was suspicious of why we were in Canada for two hours and why we didn't take the border crossing from Creston. I figured our visits to Canada were numbered: we were suspected dealers. We had a good laugh about it and headed back to Idaho.
January 18, 2015... I think this day was harder on me then October 11, 2014, the day I was diagnosed. The day started off good. Mom and I did a water aerobics class together. Mom is always willing to try new things. She's a great person to hang out with. We shared lots of laughs, but there was something hanging over our heads and we couldn't fully relax. I had been trying to start Round Three since the beginning of January. My spirits were up, I was ready, but my body wouldn't cooperate. I was still neutropenic. My ANC had to be 1,000 and my platelets had to be 50,000. For days my numbers barely budged. To top it off I was really dehydrated. Megan said I needed IV fluids. A sweet nurse named Erin made three attempts to start an IV. Each attempt resulted in my veins being infiltrated, which meant the fluids were going into my surrounding tissues rather than my veins. My arm and hands swelled up. after the third attempt I reassured Erin it wasn't her fault, but I would not sit there and try again. I would drink the bag of saline if I had to. A few days later, despite the increase in fluids, my dehydration issues had not resolved. Another attempt was made to start an IV. No luck. One of the most experienced nurses in the clinic was unable to find a vein. Again I said no more. That night I drank two gallons of fluids. My counts were still low. I went in last Thursday and Megan and Dr.Mulvey told me I needed another bone marrow biopsy to see if I had relapsed. This would be my third since October. The procedure was done almost immediately and I was told the preliminary results would be back the following day. We waited anxiously by the phone. Finally about 4:25, Dr.Mulvey called to tell me it looked good! The final report wouldn't be ready until Monday, but he was encouraged; there was no increase in blasts. Oh how we celebrated! Plan A would continue! Unfortunately our celebration came to a quick end tonight. Dr.Mulvey called to tell me I had relapsed after all. I have about 15% blasts in my marrow. He said "It doesn't look good. You have about a 40% chance of going into remission and you have to have a bone marrow transplant." He asked me if I wanted to do the repeat of induction here or at the Mayo Clinic. I am choosing to do the induction here. He will call the clinic tomorrow and ask them what kind of chemo they want to give me. As hard as this is on me, it doesn't compare to how hard it is on my family. I will fight to live, but if I die, I know where I am going. It's the ones left behind who hurt the most. Despite my sorrow and despair, this is nothing compared to watching my son die after his transplant. I told Meghan and Casey when they were little that I have four chambers in my heart. One was for Casey, one was for Meghan, one was for Logan, and one was for their dad. When Logan died one of my chambers was gone and it hurt. What's going to happen to their hearts if I am not there? I feel for them and I feel for the rest of you who love me. I feel for my grandma who lost a son, a grandson, and a great grandson. I feel for my parents who lost their first born grandson, I hurt for my mom who lost her mother, her father, her sister, her brother, her grandson, and her aunt to cancer. My mother is the strongest person I have ever met, but how can one person shoulder so much pain? Rest assured friends and family- I will continue Wonder Woman's Journey to Kill Leuk. I hate Leuk
January 20th- today is my nephew Kyle's birthday. He is 15 now and taller than his dad. I would love to wish him a happy birthday in person. I have several cousins who have birthdays in January. I've missed them all. Today we have been searching for places to stay in Rochester, MN. That's where the Mayo Clinic is. From the start I have felt the Mayo Clinic is the best place to go if I needed a transplant. I was treated there when I was 12. They diagnosed me with osteomyelitis in my left mandible. I stayed in St.Mary's Hospital for almost a month. It's a nice town, but what is most important is the Mayo Clinic has a wonderful reputation. I want the best because I want to live. From the beginning I have refused to go to Seattle. Logan was treated in Seattle and died after his transplant. Seattle doesn't bring a lot of good memories to mind. Seattle is closer to home though and it's close to the headquarters of Patrick's employers. We do have friends there. What place is the best place for me? I sure don't know. I just want to live. Now I have the worry about my job and insurance. I don't know what's going to happen with me being gone for so long. There are so many things to consider. I'm glad my mom is here and I'm so glad Patrick is coming back today. I am in desperate need of prayers. Prayers to know which is the right path for me, and prayers to stomp Leuk into the ground and send him back to Hell where he belongs.
Dr.Mulvey called. The Mayo Clinic wants to see us possibly this Thursday or Friday. I could start chemo with them right away. But I am not prepared to leave Idaho yet. I would like to do my re-induction here. I'm hoping I can go home to AK for a little bit while they search for a donor. This upcoming round of chemo promises to rough. Dr.Mulvey said to expect to be in the hospital an entire month. I had labs drawn today. My arm swelled up immediately when Todd put the needle in. I confess I cried, not because it hurt, but because it seems my body is failing me. I feel so good so how can I be so sick? My white count isn't going up at all. My platelets did! But Dr. Mulvey said soon everything will drop. Without chemo I will die. They just have to get me in remission and keep me there before the transplant. We expect that may happen in March or April, depending on how soon a match is found.
Comforting words for today:I guide you in the way of wisdom and lead you along straight paths. I know how confused you sometimes feel and how much you long to find the way forward. You have tried so many different things; you have been so hopeful at times. Yet your hope-filled paths have led to disappointment. I want you to know that I fully understand how hard your journey has been, I also assure you that I can bring good out of every bit of it.This is the way of wisdom: trusting ME no matter what happens in your life. It is through trust that you follow Me along the right path. There are many things that seem random or wrong as you go along your journey. Yet I am able to fit them all into a comprehensive plan for good- My master plan. So don't be fooled by the way things appear at a given point in time. You are only looking at a very small piece of massively big picture. From your limited perspective, your journey may be confusing, with puzzling twists and turns. However, from my perspective, I am indeed leading you on straight paths.""We are assured and know that all things work together for good to and for those who love God and are called according to his design and purpose.MYou see my friends and family, I don't claim to have the answer of why my family is once again fighting a terrible battle of leukemia. I can't explain why Logan died after receiving a bone marrow transplant when we and hundreds, maybe thousands, prayed faithfully for him. I can't explain why God allowed me to contract leukemia and then relapse when we thought everything was going so well. I can't explain why I am having to face my fears of reliving Logan's transplant by having my own. What I do know is every last breath I have will be spent thanking my Lord for loving me and dying for me so that I may live in eternity with him. Yes, I am afraid of what is to come, but I also have the peace of a personal relationship with my God. I am in a win-win situation! I will fight to remain on this earth until I am old and gray. But if God chooses for me to leave this earth early, accept it and make plans to meet me in Heaven When it's your turn. Trust him.
Wonder Woman's Support Team Rocks
Who am I kidding! I'm not really feeling like Wonder Woman, but it's fun to pretend. I have gone from gloom to smiles tonight. Why? Because of YOU my friends. Who am I to deserve such support? Why me? Whatever the reason you choose to encourage me is much appreciated. Tonight I have been blessed beyond belief. Being a frugal person who doesn't like to spend money on myself, I have found it difficult to imagine what I am costing my family. Patrick put it this way, "We are not pinching pennies and buying medicine at Wal-Mart! You will get the best care no matter what the cost is." In my gut I feel the Mayo Clinic is the best place for me. I am trying to put my feelings about Seatte aside, but everytime I think about doing the transplant there I am sick to my stomach. I know there are a lot of reasons why I should- it's closer to AK and more convenient for family and it's close to Patrick's company headquarters. But it just doesn't feel right. I look forward to touring the transplant faciliity in MN to see if I feel just as good about going there as I do now.I just want to thank each and everyone of you for sharing this journey with me. I can't imagine doing this without you. You are each a part of me now and forever!!! Tonight I have my husband back. Yesterday when I called and told him I had relapsed he told me he would catch the next plane. I immediately told him, "No, just stay there as planned and come back on the 4th. It's not like you can do anything to change it." As soon as I said that I said, "Please come, I can't do this without you." I try to be self reliant and independent, but the truth is I need my family and friends.Tomorrow Meghan and Ollie will be here. We will spend the next few days pretending I am not sick and relishing the moments with that precious baby girl.
January 21- last night my wonderful husband arrived. I feel so safe and happy being back in his arms. He makes me feel like everything will be okay. On top of it all, I had so many encouraging posts, texts, emails, and offers to help from my dear friends. Last night I was giddy with thankfulness! I felt on top of the world because of you, my dear friends! This morning Mom and I did two water aerobics classes back to back. We had so much fun as we danced around the pool pretending like we didn't have a care in the world. Besides a backache I had where the biopsy was done, I felt great.
I hadn't heard from the Mayo Clinic regarding my appointment so I gave them a call. The lady in the Hematology/Oncology Department said the notes showed my doctor said I wasn't able to come for an evaluation. I knew that wasn't true; he and I had just talked yesterday and he knew I agreed to go. How could I not? She told me the first appointment available was February 18th. My heart seemed to stop. I told her if I didn't start chemo soon I likely would die. She said that was the best she could do. I hung up and called my doctor's office. Shannon promised Dr.Mulvey would get it straightened out. Just after I hung up with her the lady from the Mayo Clinic called back and said they had a cancelation for tomorrow. I told her I couldn't possibly go tomorrow because I had family coming in and still had to buy tickets. She informed me she would let Dr.Hogan know I refused the appointment. I admit my resolve was shaken. I felt abandoned and left alone to figure all this out on my own. It was too much to handle! Thankfully my doctor did straighten it out and another (more efficient) lady called me back and told me my first appointment would be on Tuesday. I will have to be there for three days! I have to have multiple tests done which include a psychological exam. Really? At this moment I don't feel so mentally sound. One minute I am happy as can be and the next minute I'm crying.I have spent the afternoon trying to buy tickets, get insurance paperwork completed, etc. I went to the library and checked out a couple books. The librarian said, "These are due back in two weeks". I thanked her and walked out wondering if my doctors would tell me I just had a couple weeks. What if the chemo doesn't work and I fail to go back into remission? I remember when Logan's doctor told us he has just a short time to live. I wanted to throw something. I ran crying from the room. We never told Logan he was going to die. I didn't want to scare him. But I am an adult and I need to know so I can say goodbye. I know this sounds depressing. I don't want anyone to feel bad. But since you agreed to share this journey with me, you get the bad with the good
I'm thankful Meghan and Olivienne are coming tonight and my dad will be here tomorrow. It's going to be a fun weekend! No one will let me feel sorry for myself I'm sure.To end the night on a positive note- this is what I read today. It truly does help me to focus on continuing the fight and believing and trusting my God. "Climb into faith today. Thrust your entire body, soul, and spirit into the ocean of power called faith. No storm will ever swallow you in its squall. Believe today that you can do all things through your Savior who strengthens you. Lean into me and feel me breathe into you with my words. You are strong in me and in the power of my might. You are not like the faithless who faint at the sound of trouble's thunder. You are not like those who cringe at the sight of rolling black clouds and blades of lightening. No, dear one, you are called to ride out every storm like an eagle who flies high above the chaos. You are called to rise above the blinding blizzards of life that assail the human spirit. I love your courage, your ability to possess beautiful calm in the midst of bedlam. No trial is too much for you because you trust me. I caress you today in my love and joy." Isn't that amazing? Just reading it again brings back my joyful spirit.
Soon I pick up my girls. You know what? Life is good.Happiness is defined as watching your 17 month old granddaughter run towards you with her arms wide open for a hug. My girls have arrived.
Gathering Together as One
January 22- This morning was glorious. It was just Olivienne and me for awhile. I heard her make some noise so I went to get her. She saw me and her face lit up as she reached out her arms to me. What an amazing feeling! She loves me and remembers me even though she is only spending a few days a month with me now. How I miss those lunch hours when I would go see her and Meghan. I used to love going over there and getting my baby hugs. Sometimes Meghan would meet me at work and we would spend my lunch hour walking together. It's funny how easy it is for people to take spending time with family and friends for granted. How many times have you thouht about getting together with someone you care about, only to dismiss the idea because you are too busy? I know I have. Now I savor every moment I have with those I love.Patrick and I took Ollie and Ringo to the dog park. Ollie had more fun playing on the dog equipment than Ringo did. Ringo just wants to sit beside me on the bench.We had a nice walk. Olivienne isn't crazy about her stroller so Parrick and I took turns carrying her. It wasn't long before I was gasping for air. She's a heavy little thing! I seem to be pretty worn out today.Dad got here around lunchtime. I have missed my dad. He wrapped his arms around me and told me we were going to give it all we have. He told me we will beat this stupid cancer. I trust my dad and I know he's right. As we both said: it's not going to be easy, but we will make it through.I have our plane tickets, car rental, and hotel arranged for our Mayo visit. We are so grateful to a wonderful woman named Connie who gave us the money to help cover these expenses. We are amazed at the generosity of our family, friends, and community. A bone marrow drive is being planned and a couple fundraisers are being organized as well. No matter how good of coverage one has with insurance, there are thousands of dollars that the family of a cancer patient must pay. We first learned that when Logan was sick. The community rallied around us then too. We are so humbled and grateful for your generosity. I am in awe that so many care about me. I'm just an ordinary person fighting to live, yet you treat me like I am someone special. All I can say is thank you.
Tomorrow morning I will be meeting with my PA, Megan..Mom, Patrick, and Meghan will be with me while Dad babysits Ollie. He's getting the better end of the deal for sure. Dr.Mulvey had a family emergency and had to leave town. Megan will go over the plan for the next chemo. We return from MN Thursday night. I wonder if they will admit me to the hospital next Friday. I haven't had chemo since the beginning of December. I am concerned that Leuk is raging through my body..It worries me that we have waited this long. What if it's so bad that the next round of chemo fails to put me in remission? These are questions Megan will be answering tomorrow. To be honest, I would prefer to put my head in the sand and be oblivious.
January 23- Yesterday was amazing! I had my parents, my husband, our daughter, and grandchild all here with me. We laughed and savored every moment we had. We attempted to take Ollie swimming at the fitness center, but didn't realize no children were allowed in the pool on Tuesdays and Thursdays. Ollie was content to just run around. Meghan decided to work out so we were going to babysit. I felt utterly exhausted. Despite my disappointment I let Patrick talk me into going back to the house to rest while he hung out with Olivienne. It is hard to accept my limitations. Even though I never could sleep, I did rest and felt more energized. Much to my delight Olivienne wanted her Grammie a lot yesterday. She wanted me to carry her around, she hugged me, and gave me lots of kisses. It's an amazing feeling to be loved by the most adorable baby in the world! She is calling me "ammie" instead of Grammie. Fine by me! Meghan mentioned going back to the fitness center and sitting in the outdoor tub. I thought about it for a second and then said, "You know what? I'm tired of not being spontaneous anymore. Let's do it!" Mom wasn't sure the heat would be a good idea, nor did she want me around a lot of people. Dad said he wouldn't go because I might embarrass him. I had been telling stories about almost losing my bikini top in water aerobics and he just wasn't sure what we wild and crazy girls might do! We took off and went for it. The night was cold and it was snowing. I left my shirt on over my swimsuit as we headed outside for the hot tub. I always wear two hats; a thin one and then a knitted one on top. I took off my shirt and the knitted one fell off in the pool. I layed my shirt and towel down and we proceeded to get into the very warm tub. Meghan and I talked about my treatment, delaying Ollie's immunizations for my safety, questions we had about my upcoming treatment, and just general topics- whatever came to mind. My daughter loves me so much and she must be so scared about losing her mom. Yet like her grandmother, she remains so brave and matter of fact. They anchor me for sure!
When we got out of the hot tub we realized not only was the hat that fell in wet, but so was my towel and shirt! Oh I didn't think that one out very well. But then neither did Meghan. She never even brought a towel. We had a good laugh at out "well thought out plan". Oh well, we were spontaneous! We came back to an amazing dinner of roast beef, mashed potatoes, gravy, and carrots. My mother is the best cook in the world. She never does anything simple. I made a toast to my family thanking them for sticking through this with me. For dessert we had avocado ;pudding. Now I know that may sound gross, but trust me when I tell you it's beyond delicious! And healthy, the best part is it is chocolate!
This morning is the morning we go to the clinic and listen to the plan my doctor has for killing Leuk. I am nervous. I'm also scared to get my blood drawn since my arm swells up now. I don't understand why the body I have always taken such good care of is failing me. How can it betray me like that? Despite my disappointment that Leuk has returned and is trying to destroy me, I have never once stopped and asked, "Why me"? Now I understand how Logan felt. He was so sick after his transplant and it was unbearable to watch my baby suffer. One day I broke down crying and said, "Its not fair you have to go through this." He responded by saying, "Mom, it's not fair that anyone has to go throught this." He was 11 then. What an amazing boy! There wasn't a selfish or self-centered bone in his body. I feel like Logan did. It's not fair that anyone has to suffer, but I will not wish this on someone else. I'm no better than anyone else, so why not me? I met with Megan today. I saw the sadness and disappointment in her eyes that I have relapsed. I was doing pretty well until she walked in the room and asked how I was doing. I had to fight back the tears as I told her I was okay. We discussed our upcoming appointment at the Mayo,anticipated time frames for chemo and what to expect.This next round will likely be very difficult; more chances of having mouth sores, infections, and transfusions. However; I may not have anymore issues than I did before. I'm not going to fret about it. I am Wonder Woman after all. She told me they may insist on me doing re-induction in MN. I hope not as I have gotten really used to my medical providers here. For a family who really despised going to medical providers and hospitals, we have become comfortable here. We love Coeur D'Alene. We feel safe here. We are not looking forward to starting over with new providers, a new city, and a new hospital. We have found each person we contact here to be genuinely compassionate. They know us by name, remember details, and treat us as friends rather than just another patient.
Despite the fact I am eating very well, I have lost more weight. Meghan has turned into bossing me around like a mother instead of letting me boss her around since she's my daughter. She tried to force feed me crackers, bacon and eggs, and whatever she could think of. I guess Ollie caught on because she shoved a cracker in my mouth. Like grandmother, like mother, like daughter, like granddaughter.I am having an ultrasound of my arm this afternoon. The swelling I noticed when having my blood drawn the other day is still there. Hopefully it is nothing. On a positive note, it has been six months since I got stuck with that dirty needle. My final HIV test is negative. I will hear back about the HEP C test by Monday. The last thing I need right now is for that to be positive.Test already came back- I am negative for HEP C, thank you God! The results of the ultrasound came back too. I have a hematoma, but it's not DVT so it will re absorb and be ok.
My brother Mark, sister-in-law, Sharmin, nieces Michelle and Melissa flew in from Anchorage to visit with me for one night! Gary is here too. I am so blessed and loved. We have spent the evening having the best of times. Since I won't see Dad or Mark on their birthdays next month I made them a cake and we sang them happy birthday. I am glad I got to be part of their special day, even though it was an early celebration.
January 24- The visit with my brother and his family went way too fast. How could I possibly be content with a one day visit when I'm used to seeing them several times a week? I have learned to make do with what time I do have visiting with loved ones.We took a great walk together this morning. As usual, Sharmin, Melissa, and I left the rest in the dust. We didn't realize how far we had gotten ahead until we stopped at an intersection. I felt relieved that I was able to continue at such a great pace all the way back to the house. However; it wasn't long before I was exhausted and ready to curl up and go to sleep. I couldn't miss out on a single moment with them though. Nap time would have to wait. We went out for pizza and I sat quietly at the table soaking in the love of my family.I am blessed beyond belief.Saying goodby wasn't easy. My strong brother, who has always been someone I have admired, broke down and cried as he held onto me like it would be the last time he saw me. I know no one knows the exact moment they are going to die. But I can tell you that knowing I have a life threatening illness has made me appreciate my family, friends, and everything around me more. Colors seem brighter, rain doesn't bother me, and I love my family and friends more than ever. Little things don't matter anymore. I enjoy every moment I have and I am thankful for everything I have.
January 25- Gary left this morning. We went from a household of 11 to a household of 6 in a day. If only I could bring everyone I love together again and hold them so tightly to keep them with me every moment of this battle. Today was a day that I had to give in to my limitations. I am tired and out of breath. Is it because I am even more anemic or am I dehydrated again? Tomorrow Patrick and I leave for MN and Meghan and Ollie go back to Alaska. On Tuesday I should have a better idea what lies ahead for us in this Wonder Woman Journey to Kill Leuk. We struck him down so quickly the first round. He's stronger than I thought. I believed him to be a weak adversary, but unfortunately he has decided to be my nemesis.What he doesn't realize is my faith is big enough to move mountains.
The Trip to the Mayo Clinic
I had trouble sleeping last night. I woke up several times wondering what we will hear this week. Will they tell me they are the best and they can fix me right up? Or will they tell me they can't help me? Will they say there is no hope? All these things were racing through my mind as I attempted to sleep.
Today I say goodbye to Meghan and Olivienne. It's never easy giving them that last hug knowing it may be awhile before I see them again. The next time I see them I may be too sick to hold Olle. So many things I fret about. Learn to live from a place of resting in Me. Since I- the Prince of Peace-am both with and within you, you can choose to live from this peaceful place of union with Me. This enables you to stay calm in the midst of stressful situations, by re-centering yourself in Me. We can deal with your problems together-you and I, so there is no need to panic. However;the more difficult your circumstances, the more tempting it is for you to shift into high gear and forget My peaceful presenceThis book calms me. When I start to panic I read this and it grounds me. It helps remind me that I am never alone.
January 26- Currently in Minneapolis. We got in late last night. We had some issues at the airport which led to our flight being delayed and Meghan's;being cancelled. We all got switched from Delta to Alaska Airlines to Seattle. The nice thing about that was we got to hang out with Ollie on the plane and were able to visit with both of them in Seattle. We dragged out our goodbyes which made it a little easier on all of us. I was so utterly exhausted that I barely registered when we had to part ways. I was even more tired than usual since I took two motion sickness pills. Thankfully there was no one between us and I curled up in a little ball while listening to my praise music. I slept fitfully; alternating between feeling peace and feeling anxiety. It was no different when we got to the hotel. I haven't slept a whole night in four nights. Why can't my mind shut off and let me rest? I need the rest for my body to fight Leuk. Wonder Woman needs sleep to rejuvenate so she may destroy her nemisis.
We will be leaving soon for Rochester. It takes about an hour and a half to drive there. The plan is to get lunch, check into the hotel, and then go to our appointment at the Mayo Clinic. We will face the man who holds my future in his medical hands. What is he going to say? Will he give us hope? These are all questions floating around my mind all the time. I can't escape the apprehension no matter how hard I try. For someone who has her life planned out every moment, this is a true testament to being patient and letting God take the wheel. I think as soon as I have a plan I will be able to settle down and go with the flow. Right now I am wondering if I will return to the prison on Friday to resume the poisoning of Leuk. Leuk needs to die, but since I am the host for him, I, too, am punished when the poison is injected into my body. Wonder Woman doesn't hesitate when she puts her life on the line for the good of humanity. Neither will I. I will fight, fight, fight to win.
Our appointment at the Mayo Clinic went as planned. We first met with Darci, the nurse practitioner, who answered most of our questions and explained some of the process. My counts look pretty good- my hemoglobin is 9 now and platelets are normal. WBC' s stayed the same. I was upset with the phlebotomist because she used a regular sized needle and dug around attempting to find a vein. It really hurt. I have scar tissue built up on my left arm and a hematoma on my right. I don't have much to choose from. She needed 9 tubes of blood. I finally asked her nicely to take the needle out and use a butterfly on me. Patrick keeps telling me I need to be more vocal, but I never want to hurt anyone's feelings. He is right though and I will work on being politely assertive.They also did my HLA typing today. It was funny because I had to swish mouthwash around my mouth for 20 seconds. Instead of taking a little, I had about 3/4 of it in my mouth without realizing it. I was trying not to laugh as I mimed the motion I needed to spit some out. I followed it with swishing water for the same amount of time. She gave me very cold water and we both were trying not to laugh as I attempted to swish. After that she scrubbed both of my cheeks with a swab. That will be sent to the National Registry. The goal is to find a ten out of ten match. If none can be found they may look to my brother as a half match and mix with umbilical cord blood cells.
Dr.Hogan seems very knowledgeable and agreed to allow me to return to ID for my re-induction. I will have six days of very intensive chemo. I will remain in the hospital until I am no longer neutropenic- about a month. A bone marrow biopsy will be done at day 14. If I am in remission I can go home when counts are up. I mean home as in Alaska! I will have to do consolidation chemo there. When a donor is found I will go to MN and have extensive testing, radiation, and chemo. Then the transplant can be done. 90% of this process will be outpatient.Despite the fact we are going into this with eyes wide open because of our experience with Logan, it's still mind boggling to deal with. I am overwhelmed. Thank goodness I have my dorky husband who just tries to make me laugh. I know he's hurting too, but he sure does a good job of making sure I am emotionally sound!Wonder Woman is going to kick Leuk's ass! He is going down! I will throttle him and poison him. He will cry for mercy, but I will look at him with scorn and say, "God and Wonder Woman have defeated you, you slime!
January 28- I had an appointment with a psychiatrist first thing in the morning. I hadn't slept well and I was frustrated because I wasn't able to check my email due to a hotmail issues. I was in the lobby for about 40 minutes before I was even called back. I think they have a deviant strategy in making people wait. They want to see how many lose it in the lobby. I was afraid that I would succumb to my rising level of frustration. But alas, I was called back before I completely gave in to my frustration. I met with a nurse the first hour. She asked me a series of questions and went over the questionnaire I filled out.I don't think those questionnaires are really right for someone in my situation. Yes, I am stressed and anxious and yes, I am having trouble sleeping.Who wouldn't be if they recently found out they relapsed and need a bone marrow transplant? What good will sleeping pills do? I will still be woken up with a certain person snoring next to me. And the next month in the hospital? There will be no sleep as they come in every couple of hours to check on me.
My favorite story is the time my over eager CNA came in at 0100 I believe to tell me she would hang a paper on the door and every time I went to the bathroom I could write down how much urine there was. Then she wanted to know if I wanted to be weighed right then, or wait until 0500. This was after I made an agreement with my nurses that they would leave me alone for a few hours so I could sleep a bit. I refrained from throwing said urine at her.
After I met with the nurse, I was directed to return to the lobby and wait for the psychiatrist. She too stressed how important it is for me to sleep. She suggested Melatonin, but emphasized that it will only give me an hour or two of sleep at a time. I'm not sure what the benefit of taking it would be. It sounds about the same as what I am dealing with now. I may wake up lots, but I do go back to sleep. The doctor wanted to talk about Logan's treatment and death and how I am dealing with being in a similar situation. I told her it sucks and I am really pissed off about it, but it is what it is and I take one day at a time. I told her about my incredible support group and how you all are getting me through this by sticking by my side. She could tell how loved I am.
Our next appointment was with the social worker at 3:00. We went to a yummy pizza place and had lunch. I went into the restroom to wash my hands. I glanced in the mirror and was disgusted at how bad I looked. I looked tired, drained, and old. I sat down across from Patrick and told him when my hair comes back I will never wear another hat as long as I live.
Since we still had time to spare we went and looked at a house for rent. We need a house due to all the people we will have visiting us. The cancer houses down here only allow one other person to stay with the patient.The house was certainly adequate,but depressing because it's not home. I long to be home. Our appointment with the social worker went okay. The social worker who works with the bone marrow patients was out sick, so we had to meet with a SW whose speciality is kidney transplants. We were handed yet another folder of information for our reading pleasure. Everyone wants to make sure we understand what we are getting into. I get it. Been there. Done that. Not much has changed in 16 years despite all you hear about "how far we have come". Really the truth is there isn't as much progress as the general public is led to believe.
It was now time for another blood test. This time I was prepared to be assertive. I informed the phlebotomist he needed to use a butterfly needle on me. I told him I have scar tissue in my left arm and a hematoma on my right. He could use the right arm,but could not use a tourniquet. He opted to use the left. He stuck the needle in and missed the vein. He dug around while exclaiming about how much scar tissue is in that arm. Success! He found a vein and I was done.We were finished with our evaluations. They altered our schedule so we didn't have to drag it out over three days. Unfortunately they did this after our plane tickets were paid for. To change them would be another $1,000.00. We were stuck in MN another night.
Just when we were about out the door, Darci, my NP called. I needed to go back to the lab and have another blood draw. My heart nearly stopped as she told me my HIV test came back positive. After I was stuck with the dirty needle I was tested several times. All tests have been negative. The last one was just done on January 23rd, exactly six months to the day since I was stuck with a needle used by a heroin addict. That test was negative. Now it comes up positive? I was listening to her and tried to get Patrick to wait. All he could think about was bringing the car up so I wouldn't have to walk out in the cold. He didn't hear my pleas to wait. I stood in that lobby and felt the sheer terror come over me. I was literally drowning In panic. Darci told me they believe it's a false positive, but they have to be sure. I walked like a zombi back through the maze of halls to the lab. I checked in again, choking back tears as I told her I was back for an HIV test. This time I had a female phlebotomist. Was it my imagination or did she treat me like I was some drug addict who was worth nothing? She was cold and uncaring as she too dug around in my arm to find a vein.I got lost trying to find my way back to the lobby. I felt like I did when Logan died. I was confused and nothing made sense. I looked up and saw Patrick standing there. I leaned against him and sobbed. How can this be? Haven't I been punished enough? Why is this happening? It's bad enough that I have to go though the same process that killed my first born son. Now I may have HIV on top of leukemia? What a sick, cruel joke. Statistics show less than 1% of people accidentally stuck with a dirty needle contract HIV. I took that horrible medication that is 99.7% successful in preventing HIV. The medicine that made me terribly sick. The medicine I am convinced caused my leukemia. And now I am told I may have this dreaded and horrible deadly disease on top of my rare form of leukemia?;I spent my evening crying so much that I couldn't even see due to the swelling of my eye lids. Patrick tried to console me the best he could. After hours of grieving I came to the conclusion there is nothing I can do to change this. I could be mad at God and the whole world, or I can face this with dignity, faith, and grace. I choose to trust my God even though I do not understand. What I need now is for you to carry me. Carry me in your hearts and pray the repeated test is negative. I am scared, but I am not alone.Waiting with hope is very difficult, but true patience is expressed when we must even wait for hope. I will have reached the point of greatest strength once I have learned to wait for hope.-George Matheson.Be of good courage and He shall strengthen your heart, all you who hope in the Lord. Psalm 31:24
Re-induction soon begins
I have 38 minutes before I have to be at the hospital, but who is counting? After I get all checked in, they will take me to short stay to put PICC number three in. I tried to explain to Ringo that mommy has to go away for awhile because I'm sick. He looked at me like I was nuts. I told him, "I know I don't look sick, I don't feel sick either!" I'm still in shock about all of this. How can I feel so good when Cancer cells are running around my bone marrow? I keep thinking all the tests are wrong. Maybe just a little pill is all I need to have more energy. So this new chemo they are giving me for the next few days sounds really awful. No, thank you I would love to say. You may keep your vomiting inducing, mouth sore inducing poison, I don't want it. But alas, they are going to connect me with Tad once again and hold me hostage for days on end, filling me with this horrible stuff that may kill Leuk. The only thing I have ever killed is a mosquito. I have turned into a hunter; I will hunt this bastard down and slay him. How I despise Leuk! He has robbed me of my energy, my health, and my normal life. But he has not robbed me of my faith. He has not taken away the love I share with so many of you. He has brought me closer to my friends and family and to my husband. He cannot steal my joy and hope. You will die Leuk, do you hear me???
I am all checked into One North. What a funny morning I have had and it was just Dad and I for awhile. Despite my circumstances, I have such joy and delight and enjoy being around the medical staff. As usual I refused to get on a gurney or ride in a wheelchair. The regular escort guys remember me, but I had two new ones today who just didn't know what to think of me. A very young one named Zach told me he just couldn't let me walk because it's against policy. I told him they make exceptions for me. I felt sorry for the poor kid, but I wasn't budging. He made the call and I walked to get my heart tests. The poor guy was so flustered that he forgot my chart on the gurney. He had to run back to get it. He brought it into the room where I was getting my echocardiogram and tried to just lay it on the sink with his eyes diverted. Heaven forbid if he saw me disrobed! He dropped the chart in the sink. Poor kid. The guys who put my PICC line in remembered me as the only one who has ever walked into their room dancing. They seemed disappointed that I didn't bring music for today's procedure. Before I walked into their room I talked Dillon into getting on the gurney while I hid behind the door. I seem to have a reputation. Not sure if that's good or bad.
I'm eagerly awaiting the arrival of two wonderful ladies I used to work with at PCC. Faith lives in Spokane area, so I have seen her several times. She just picked up SanDee! I will once again have a room full of people and lots of laughter will be shared. I have been reunited with Tad. Blah. Pre-meds will be started soon and then the poison will be running through my veins. Dr.Mulvey came to see me. He said he will follow up on the HIV test, but he is sure it was a false positive. I pray that's trueAnd it is true!!! Darci called and said the repeat test was negative. Thank you, Jesus! It's been over six months since I have been stuck. I am cleared and oh so thankful.I have had three different IV chemo's today. So far, so good! I'm feeling a little bit nauseous and ordered some meds to help with that. Overall it went really well. I was ravenous all day and ate three square meals and a couple snacks! i enjoyed visits with my family and Faith and SanDee. I fell asleep on them- so much for the party animal, eh?My room this time is much nicer this time. Laminate floors, big room, stereo, nice TV....I asked for a bucket of champagne on ice, but they failed to provide it. I give it 3.5 out of four stars. Would have gotten four if they had chocolate covered strawberries too.
January 31- what would have been my next to last chemo has become the precursor to many more. We must get me in remission. Then I can hopefully go home to Alaska on maintenance chemo while we wait for a donor. Please register at.bethematch.org. If you can't because of health or age concerns, please pass on to every person you know.
I want to go home so badly. I want to sleep in my own bed with my dogs and cat. I want to go to work everyday and do my part. I want to get back to the range and shoot my gun. I want to hold Ollie. I want to see Granny and all my friends and family. I want to get back to church and thank everyone for praying for me. I want to live.....I slept pretty decent last night. Evidently they checked my vitals in the middle of the night and I slept right through it. Tad woke me up with his obnoxious beeping at 0430. I took a shower and then took a walk while I was still detached from Tad. He is no fun to walk with!What a fun day I had! I put a pair of cute pajamas on and wore my Jester hat all day. I took an early morning walk and waited for everyone to arrive. We spent the day talking, laughing, doing more walking, and playing a game called, "Deer in the Headlights". I lost. Seriously, they can't let the sickie win anything! When I got back from my third walk I hadn't quite reached four miles and I was pretty darn irritated. I donned my mask and took off again. Success was mine! I walked 4.31 miles today. Going for 4.5 tomorrow!
Amazingly I only had a slight bit of nausea today which was easily remedied with meds. I feel great! After Patrick dropped everyone off he came back to visit. We set on the love seat and I fell asleep on him. Charles came in and told me it was time for my eye drops and time to be hooked back up to irritating Tad. Patrick laid beside me in my bed and I fell asleep again. I woke up to find him gone.It's now 0015 and I'm wide awake. I just tried a Melatonin for the first time. I hope it works! We have an agreement that they will leave me alone till 0500.
February 1- well they left me alone till 0500, but I didn't fall asleep till about 0330. Melatonin doesn't work for me. Had to take Ativan to get any sleep. I had them unhook me from Tad and I showered, dressed in my Wonder Woman outfit and went for a 1.13 mile walk around the floor. I did some lunges, danced, skipped, and sang in the halls. Patrick, Steve,SanDee, Mom, and I played a couple hands of Uno Dare. We had to do all kinds of crazy things. I had to dance like a ballerina which is difficult being connected to Tad. Mom and SanDee had to act like cats, and Steve had to do push ups. Patrick refused to do any dares and preferred to draw extra cards. Chicken.Dennis arrived and brought some yummy food. I still have a great appetite so they brought me lunch. The guys left to watch the game at the house. I am about ready to fall asleep.I did fall asleep and slept through the first half. Managed to take four walks today am achieved and exceeded my goal. I walked 4.71 miles today;going for 4.75 miles tomorrow. I have much more to say, but it's almost midnight. More In morning.
February 2-Well it was another night without much sleep. I had a hard time getting myself out of bed today. Patrick brought Ringo over and I walked him outside. I took another walk later on, but only got in about 2.0 miles today. It's not that I feel bad, I'm just so tired. I have slept a lot today. I feel sad and blah. I want to go home.
February 3- I continued to fall asleep quite a bit curled up against Patrick in the bed. I held him hostage. I feel so much better when he is close by. Mom said he snored some, but I was so tired I slept right through that! They left around 10:30 I think. We break all rules of visiting hours being over at 8. No one is bothered by my many guests . I woke back up at midnight and desperately asked for a real sleeping pill. I've never taken one. Well, I don't have one ordered because I have always refused them. I took Ativan, and as usual, got three hours of sleep. Back up again and tried another Melatonin. I dozed for a few hours and then took a shower at 7. I feel refreshed! I think my good mood is back! Dennis left yesterday and SanDee leaves tomorrow. But I will have Casey and Kelsey for a bit so that will be nice. I love my family and friends and I am so grateful to be so blessed by so many.DOC has really come through for me. Palmer, Anchorage, and Kodiak PO's are doing bone marrow kits to see if they match me- as well as getting on the National Registry. There are so many people out there who desperately need a transplant to live. It's a great way to help someone out. Please consider being on the registry. You can also donate your baby's cord blood to save a life. EJ Bartells Has continued to bless us tremendously. How does one family have so many to care about them? Between our work, family, and friends, we feel carried through.
This is my last day of re-induction chemo! Yahoo! Day five and done. Hope is I will be in remission and get to go home on maintenance chemo until they find a match for me. I want to work, be normal, visit with friends, and family, and play with my dogs. Then there is babysitting Ollie on top of that list too! Ok I have a confession- I'm really at a spa, not the hospital. I have people waiting on me hand and foot. My mom does my laundry everyday, Patrick and Steve brought me dinner last night, San Dee just gave me the most awesome aroma therapy hand and foot massage, and the nurses bring me water all day long and sugar free Popsicles. I'm being spoiled rotten! I feel like I am cheating at this chemo thing.Dr. Mulvey said I can be released from my pole dancing tomorrow as long as my counts look good. Tad has had a full dance card as all my walking partners take a turn with him. Patrick can pole dance like you wouldn't believe! I walked 5.74 miles today. Dr.Mulvey gives me a hard time about walking because he says I exercise more than him. I asked him to release me early from the hospital. He said next week may be the rough week because I will be neutropenic and possibly have a fever. I tried to negotiate but he was noncommittal. I held up my sign, "Don't make me open up a can of pout." He just walked away. I think I am winning the battle. He has met his match in this Alaska girl.
Post-re induction. Is it Successful?
I am lying wide awake at 0300 wondering if the poison running through my veins the past five days killed all the blasts in my marrow. Did I pray enough? Did I do enough to stop the coursing of leukemia cells streamimg through the body that betrayed me? My biggest question is why someone so healthy could contract this disease. I ate right, I took vitamins, I exercised regularly. Couldn't my body resist that medicine I took after the needle stick? But it's not just me: Logan was 9, he was healthy, he exercised, ate right, and he was so good. He was so loved. Everyday on FB I see stories about little children who have Cancer and are fighting to live. I won't pretend to understand why it's happening. I won't pretend I accept it. There must be a cure for all of us. I have many friends who are in the fight for their lives right now. It "shouldn't be" any of us, yet it's many of us. I am thankful my mom is a breast cancer survivor. I'm happy so many have won this horrific battle. I want to win it. I want God to heal me so I may stay on this earth for years to come and be a testimony for him. But if he allows me to die, know it is for his glory too. I will never renounce my God.There are reasons for everything. We may not understand and we may not like the reasons, but living in Heaven for all eternity is the greatest reward we can ever imagine.Today is the beginning of waiting and watching to see what the poison did to me. Dr. Hogan from the Mayo Clinic said I should have a bone marrow aspiration on Day 14 to see if I'm in remission. Dr. Mulvey wants to wait until my counts plummet, then rebuild with new cells. I agree with Dr.Mulvey. Let's not jump the gun on this. At the end of the month I hope we are at the point to see if it worked. If so, I can go home to Alaska and wait for a match. I will have to do some chemo up there, but I found a doctor who is willing to supervise me under the Mayo Clinic's care. Once again I am attempting to take control over my life. Being out of control is a foreign concept for me.
I must say goodbye to my dear friend,SanDee today. How blessed I am to have so many friends come to be with me. I never knew how loved I was. I have new visitors to look forward to as well. I am blessed beyond belief.My friend Laura, who now lives in Spokane, came to see me today. We went for a walk outside with Ringo. If it weren't for the mask, and Laura having to scoop his poop for me, we could have just been two regular gals out for a strolL.
Dr.Mulvey came in around 6pm. I whined about how bored I was. What I was doing was setting the tone for a release in a week or so. To my surprise he told me I could leave in the morning! My labs are all good, no fevers, no mouth sores, and I am walking over four miles most days. He made me promise to check my temperature four times a day and I have to go to the clinic in Post Falls everyday. I eagerly agreed! He went to the nurses station to start the process. A few minutes later he came back and said, "Do you just want to go home tonight?" I jumped up and started packing the month's worth of belongings I had brought. I looked over at Patrick and saw the apprehension on his face. Mom had left earlier to surprise Dad. He had to be responsible for me on his own. He was scared.
February 5- Happy Birthday Dad! You daughter is FREE and you have your wife home again. It's great to be out of the hospital. I'm nervous too, but we are only 1.5 miles away. I slept intermittently last night, but much better than I do in the hospital. It's hard to accept I can't do a whole lot, but I promise to be a good patient at the ID house so I can stay out of prison.By the time we got to the clinic today I was feeling pretty rotten. I know it must be hard for Megan and Dr.Mulvey not to say "I told you so." I was very nauseated, tired, and all around feeling yucky. Did I make a mistake complaining about being in the hospital? As I sat there in the chair to get my labs done I fought back tears of frustration. How can I go from feeling so good to feeling so sick? The answer lies in the lab results. My ANC went from about 1400 yesterday to 300 today. I am neutropenic. Now the fun really begins. Megan reminded me she told me before that the first week is the easiest. I chose to not believe that. I am determined to be different. I am determined to be a success story they will talk about for years.I feel lazy and feel like I'm taking advantage of my situation. Although I don't feel as good as I did, I should be up cleaning, working on taxes walking the dog, or something! "I'm bored", I whined to Patrick! I want to go to a movie, go to the mall or something! But alas, being neutropenic means staying home. It reminded me of Logan being upset his ANC wasn't high enough to go to the mall. We were walking across the street to Ronald McDonald House after leaving Children's Hospital. He was so disappointed his counts weren't up because he really wanted to get something at the mall. He started kicking gravel with his feet and muttered, "I'm just like a pit bull- you just can't take me around people." I get it now, Logan.
I decided to Face Time Meghan and Ollie. Now that made me feel better! I played our usual pat-a-cake, sang Itsy Bitsy Spider, read her a book, and played "here is the church,here is the steeple, open it up and see all the people!" All her favorite things to do with Grammie. I love being able to see that precious little face
February 6- I slept off and on, certainly better than hospital sleep! It's nice to have my husband beside me and my dog on his bed next to me. I'm a little nauseated again this morning. No, I do not have morning sickness. HA! I do however think its time for an anti-nausea pill. I was granted a pardon today at the eleventh hour. Let me tell you my story.....I was doing great except for a bit of nausea. While getting dressed, I found myself completely out of breath and dizzy. The house we are staying in has this really nice size closet and I went in there to dress. I barely got my clothes on when a rush of dizziness came over me and the room seemed to spin, I laid down on that wooden floor thinking it was the most comfortable floor I had ever been on! I stayed there for awhile thinking about germs getting into my respiratory system, but didn't have the energy to move. Finally I mustered up the energy to go downstairs. I was looking for something when another wave of dizziness hit. It was time for my appointment and I figured I would need some fluids. Patrick pulled up to the door to drop me off. He was going to run across the street to the hospital to drop off a thank you note I wrote to the nurses on One North. He asked me if I needed an escort up. I scoffed at the suggestion as I apprehensively moved towards the door. I looked back to see if he had noticed my faltering steps, but thankfully he had gone. I needed to go to the infusion room on the second floor. There was no way I was taking the elevator as that would mean accepting defeat. I climbed the stairs and headed towards the door. I couldn't breathe and the room was spinning. I swear I saw stars. I collapsed into a chair and said, "I need a bed". Charlotte brought a wheelchair over. "I will walk!" I said. Then I said, "Nevermind, I need the help." I had succumbed to temporary defeat.;I got in the bed and they called Megan to come see me. When she arrived I told her I was just looking for attention- I like people fawning all over me. She grilled me good. "How long have you felt like this? Do you hurt? Are you eating? Drinking? Fever? Chills? I answered her honestly, yet as usual she looked at Patrick and asked, "Is she telling me everything?" Geez. I may downplay a few symptoms but I am honest when asked. She ordered orthostatics. That's when they measure my blood pressure and heart rate while lying down, sitting up, and standing. I failed. I received a liter of fluids and then did ortho's again. Again I failed. Both she and Dr.Mulvey had come in by this time telling me they were on the fence about re-admitting me. They are concerned that I may be developing an infection even though I don't have a fever. They took blood for cultures. Dr.Mulvey asked me if I just wanted to go back in since he could admit me now, rather than possibly having me call the on-call doctor tomorrow. I politely declined his invitation. He told me if I have any symtoms at all I was going in and it was non-negotiable. To his surprise I meekly agreed. I had the same conversation with Megan. If I failed ortho's for the third time I was going to the Big House. I narrowly passed much to my relief.
I have these weird revelations from time to time. I was in the restroom at the clinic washing my hands. I looked in the mirror and started laughing. I finally get it! No matter how much I blame myself for the needle stick and taking the medication, I have leukemia from no fault of my own. I have blamed myself for months. If only......I laughed as I thought, "only you, Marre, could have a son die of leukemia, get stuck with a needle, and get leukemia yourself." It's just the luck of the draw. My destiny, my fate, whatever. I didn't mean for it to happen, I can't prove the needle stick made it happen, but by gosh I was going to stop blaming myself! I laughed not in amusement, but in freedom. Guilt had no power over me anymore! Or so I thought.
I'm a big believer in naturopathic remedies. I take vitamins and use essential oils. When I finished the last two rounds of chemo I returned to my natural regimen to repair the damage done by the chemo. I had been asking about continuing the usage and Megan agreed to do some research. She came up to tell me some of the ingredients are known to counteract chemo. My revelation that I am not to blame for my leukemia came to a skidding halt as I sat there fearful that I caused my relapse by taking the naturopathic remedies. Megan may have only known me for four months, but she can read me like a book. "You did not cause your relapse" she exclaimed! "Stop blaming yourself!" The peaceful feeling went away as I felt the shame again that I caused my sickness. My Meghan, who also can read me quite well, called. I didn't tell her how I was feeling, but told her about the vitamins and oils. She said, "stop feeling guilty, Mom! You didn't cause this and you need to stop feeling guilty."In my devotional today from "Jesus Calling" it says, " Come to me and rest. I am all around you, to bless and restore. Breathe Me in with each breath. The way just ahead of you is very steep. Slow down and cling tightly to my hand. I am teaching you a difficult lesson, learned only by hardship. Lift up empty hands of faith to receive My precious presence. Light, life, joy, and peace flow freely through this gift. When your focus turns away from Me, you grasp for other things. You drop the glowing gift of My presence as you reach for lifeless ashes. Return to me; regain my presence.You see, my friends, guilt isn't from God. I dropped the glowing presence of God and allowed Satan to fill my mind with doubt and shame. I refuse to allow him to have that power over me. But for the grace of God, go I. 2 Corinthians 6:1-2- As God's fellow workers we urge you not to receive God's grace in vain. For he says, " In the time of my favor I heard you, and in the day of salvation I helped you. I tell you, now is the time of God's favor now is the day of salvation."I humbly ask for your prayers for me to accept my circumstances without guilt.
Next Phase- Managing out of Hospital
I sure love being out of the hospital. I don't even mind going to the clinic everyday for counts and a check up. Although I have been getting fluids the past couple days, it's a pleasure to walk out of there and say,"see you later". There is freedom in walking out the door and leaving the pain and distress behind.For a time I can be normal and pretend I'm a normal girl just hanging out.But then I remember I can't just take off and go the gym, the store, or a restaurant. I am the masked bandit and must continue to hide behind the mask. It's ok though. The nurses bring me drinks, my mom and Patrick cook for me, and everyone treats me nice. It's not all bad!Today my lovely daughter-in-law accompanied me to the clinic. Kelsey is in her last semester of nursing school and this experience is probably good for her hands on learning. My first ortho's didn't look so good so I got a liter of fluids. My blood counts look great! Well, great for me. I have zero ANC's, but platelets are at 100k and HGB is still 8.6. No transfusion for me for a couple days at least. My PICC line started hurting yesterday and Dr.Bartells came over to look at it. He wasn't concerned and told me I could take Tylenol for the discomfort. I dodged another bullet! If I lose this line too I think I will snap. I can't go back to the daily pokes because my veins are so useless. Here's hoping I keep this one! Line number four...
We went for a scenic drive along the lake. It was so nice to get out of the house. We passed a nature trail and I looked longingly at it. Patrick, of course, noticed and asked me if I wanted to stop. Duh! Get me out in nature, please. Casey and Kelsey looked at me like I was nuts as I marched up the hill breathing heavily behind my mask. "Are you sure you want to do this, Mom", Casey asked. I muttered a reply and kept going. After a bit I looked back and said, "What, you can't keep up with a sickie?" I walked as long as I could, but the mask caused me to get so overheated. I admitted I had gone as far as I could and we turned around. The dissatisfaction hit me because I didn't make it all the way to the end of the trail. I am so darn competitive with myself. Patrick reminded me to just focus on the moment. I hate when I have to admit he's right. I must give myself some credit. After all, I did just get out of the hospital three days ago.;In devotional from "Jesus Calling" today it says: "Come to Me for rest and refreshment. The journey has been too much for you and you are bone weary. Do not be ashamed of your exhaustion. Instead, see it as an opportunity for Me to take charge of your life." Yes, Lord, please take charge of my life and remind me to stop when I try taking control back. I can't do this without you, God.
Tonight Casey said something that really made me think. He has a theory that I was meant to get stuck with the needle and go on the medications. His reasoning is if I hadn't gotten stuck and gotten sick on the meds, then I would have been unaware I had leukemia and maybe it would have been too late by the time it was discovered. That pretty much sums up what Dr.Hogan from the Mayo Clinic said. He felt I had leukemia for awhile before diagnosis. But my blood tests were completely normal the day I got stuck with the dirty needle. Hearing two people with a similar theory makes me wonder. But what I really wonder about is why I can't just let this go and move on? Does it really matter anyway? The guilt is haunting me again.
February 8- What an amazingly beautiful day it was! It was 55 degrees and the sun was shining. We must go for a walk, I declared to Patrick! Walk, asked Ringo? His tail started wagging and he jumped in excitement. While my dad was here he took Ringo on multiple walks each day, no matter the weather. As we headed out towards the dog park I let the sun kiss my skin. Everything feels better when the sun is shining down on me.When we got to the dog park I began to fill up the container with extra grocery bags we had. There was a young lady in there with three gorgeous dogs. Being a dog lover, I greeted them with enthusiasm and told them how beautiful they are. One jumped up on me. I pushed him down and sternly told him no. His owner did nothing to control him and he did it again. I looked at her in disbelief and said, "Would you please not allow your dog to jump on me!" I was standing there with a mask on my face and no hair. All I could think about were the germs he was putting on me and the bruises he may leave. I have permission from my medical team to go to the dog park, but I have to use common sense and all the stuff on their paws should not be transferring to my clothing where it may end up in my respiratory system. We quickly left. I wasn't sure if I was more upset about her insensitivity or the ability I have lost to be normal.
I view the world differently now. Where I used to have little fear,(except for mice and heights) I am now afraid of many things. When I see children I no longer gravitate towards them. Instead, I quickly move out of their path. They are loaded with germs and they may have had recent immunizations which could be detrimental to me if I'm in close proximity. Meghan has delayed Ollie's immunizations because of me. Now I worry about her protection as well as my own. When I walk through the woods, I am careful to wear my mask because of all the spores lurking around waiting to fill my lungs with fungus. I like to think of myself as cautious, rather than irrational. Irrational means it's very unlikely it could happen. Cautious means I know it can and I take "universal precautions" to prevent it. Each day I take a handful of antibiotics and anti-fungal pills. Will they be enough I wonder? They weren't enough for Logan. He died from a fungal infection post transplant. I remember one distinct moment when Logan was going through treatment. We had our neighbor's little baby, McKenzie, over and Logan was holding her. Like his grandfather and me, he always gravitated towards the babies. I don't remember how it came up, but I had learned McKenzie had just had her shots. I quickly took her from him and told him he unfortunately couldn't hold her for several days. He was devastated. I just took normalcy away from him. McKenzie's mom, Lisa, made a quick phone call to the doctor and found out it was a dead virus, not a live one. It was with great relief that I placed the baby back in Logan's arms. Crisis averted. I was relieved to learn I didn't place him in harm' s way. Despite my concerns I refuse to stop living. I won't be placed in a bubble. I use common sense and control the things I can control. For a person who doesn't like limits placed upon her, I have adjusted well. The Serenity prayer comes to mind: God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.
I brushed off my fears and troubled thoughts and announced we just HAD to go see our friend Jim. He had been on my mind lately and I was eager to go see the changes he had been making to his beautiful house. I also knew we could take long walks around his very private property. We just happened to see on Facebook that it was his birthday! What great timing we had. Casey and Kelsey were both very impressed with Jim's lovely home. They quickly realized why Jim is one of our favorite people. Kelsey and I let the guys catch up and we went for a walk. Since this was my second walk of the day I decided not to push it and go too far. We walked for maybe 30 minutes and I was satisfied. Shortly after we got back to the house, Casey asked me if I wanted to go on another walk with him. Kelsey and I both said yes. Patrick looked a little surprised, but wisely refrained from saying anything. He knows I get frustrated with the lectures. We passed the point where Kelsey and I stopped before. All of a sudden I was full of energy! They both looked at me and told me they didn't think I was really sick. I agreed with them and said it just has to be a mistake because how could someone feel so good just after intensive chemo? Casey and I reminisced about Logan's treatment. It was a normal day for him to vomit. I have escaped the nausea for the most part. Did that mean the treatment for ALL is harsher than the treatment for AML, or did it mean the poison isn't doing its job killing Leuk? Maybe I'm not sick because so many people are praying for me, but they prayed for Logan too. Our son endured so much with such grace and dignity. I walked knowing Logan was cheering me on to finish the race.It was with personal satisfaction that I realized how far we had gone. I was determined to walk for miles. Casey and Kelsey encouraged me to turn around. "You do realize you have to walk back up that hill, right? Kelsey asked. "Piece of cake", I responded. "I will walk to that tree down there and turn around". They didn't understand the significance of that tree,but it's a game I have always played with myself to achieve more than I set out to achieve. We reached the tree and I turned around and looked at the hill we had to climb. "Crap" was my first thought. "Slow and easy" was my second thought. I trudged up that huge hill which surely was the size of Mt McKinley. I had to stop several times to get my breath and my heart was racing. Thankfully I was walking with someone who is about to graduate nursing school. At least she knows CPR! It took awhile, but we made it back. Patrick just looked at me with that knowing look in his eyes. "Yes, I went too far", I reluctantly admitted. It wasn't long before I announced I needed to go home to rest. I quickly fell asleep in the car;my body needed to rejuvenate. When we got back I checked my Fit Bit. I put in over five miles! I cheered for myself as I curled up in bed to take a three hour nap
February 9- Here I sit in the infusion room getting fluids again. I knew I needed it. No matter how much I drink, it's never enough to keep the lightheadedness away. At least my PICC is still working and I don't have to get stuck. I saw Megan today. She is a bit concerned about the soreness in my arm too. Neither of us want me to lose this PICC, but there is a good chance that may happen based on my record with central lines. She told me I have to have bone marrow biopsy number four on Thursday. If I'm not in remission there will be more chemo. I told her about a lady who just got a bone marrow transplant in December and her leukemia is already back. I told her Logan died after a transplant and now I hear about someone I have been praying for has relapsed after transplant. I asked Megan what the point was for doing it. She reiterated that without one, my chances of surviving are much lower. She reminded me of all the things that can go wrong- I can die from an infection, I could get leukemia again, etc. there are no guarantees. I know that the odds aren't great! I tried to put on a brave face and said, "It's ok, I will do it." She replied with, "it's not ok, it stinks, especially after everything you have been through."
I feel bad for my family. They have to sit by and watch helplessly. At least I stay busy managing my symptoms. It must be so hard on them, yet they never complain or act worried. Everyone is confident I will beat this. I'm thankful for Patrick's friends who call and check on him. His childhood friend is coming on the 17th. It will be so good for him to have someone to hang out with besides mom and me. His boss, Brian, was so thoughtful to send him a book to read during these boring clinic appointments. It was perfect timing because Patrick had told me the day before that "I bore the s### out of him "during these appointments. He was teasing. Kind of, lol. It's true I'm not much of an entertainer at the clinic. He made me laugh though. I miss work so much. I can honestly say that I love my job and I looked forward to going to work everyday. I miss helping people. I come from a family that loves to help others. I desire to make a difference in the lives of others. I wish I could volunteer somewhere, but with a compromised immune system I am out of luck. I hope that by sharing my journey that I am helping at least one person
February 10- I have been awake most of the night and finally got out of bed at 0300. My brain needs sleep, but my body isn't cooperating! My stomach hurts and I feel nauseous. I hate to admit Dr.Mulvey and Megan were correct about the second week being harder than the week of chemo. Maybe these latest symtoms won't last long. Last night we took Casey and Kelsey out to dinner. We waited until almost 8:00 so there wouldn't be a crowd. We had the whole section to ourselves. We shared some fried alligator and we each had a wonderful meal. I managed to eat my soup and roll, but only could eat a few bites of my main course. If my stomach cooperates, it will be a nice lunch today.For the last couple of hours I have felt really well. I made everyone breakfast, read some devotionals, did some laundry, and some chores around the house. As I sit here and listen to my family getting ready, I am overcome with thankfulness that they care enough to be with me.;I am truly blessed to have so many be here with me. I am never alone . I am happy.
Today's appointment went well. I got a liter of fluids and a check by both Megan and Dr.Mulvey. I confessed I had a run-in with the counter top this morning, I am expecting some pretty bruises tomorrow as my platelets are down to 35k. Things are still going ok with the PICC so that's a relief. I asked Megan about going home. It's definitely a consideration if I am in remission and my counts come up. But if I am not in remission we will have to do more chemo right away. I'm still unclear if that will continue here in Idaho, or if we would have to leave right away for the Mayo Clinic. Megan said we are just planning on me being in remission. That sounds good to me. I just don't want to know until the final report comes in. Last time the preliminary showed remission which wasn't accurate. We were crushed. I can't go through that again. I don't want to be told over the phone either.We are free until 0900 tomorrow which is when I will be getting red blood cell transfusion. My hemoglobin is down to 7.
We are going to take a walk in a bit. I still have a little bit of energy!I managed about a mile and a half today. Boy am I ever tired! I came back and took a nap. When I woke up, dinner was prepared and set in front of me. Casey and Patrick cooked a great meal. It's pretty obvious to me I'm in desperate need for blood. Sometimes I can't tell, but this time I sure can. To top it off, I gave myself too much insulin with dinner so I had hypoglycemia on top of it all. Nothing a peanut butter sandwich can't cure!The highlight of my evening was Face Time with Ollie. We read each other stories, sang, and exchanged kisses. She's the light of my life,
February 11- I ended up sleeping most of the evening on the couch. Patrick woke me up at 0200 and told me it was time for bed. I slept until 0500. As soon as I opened my eyes I knew something wasn't quite right. I feel achy and I'm freezing. I'm starting to run a temperature. It's 99.6. I have to he admitted if it goes up to 100.5. I have a feeling even if it doesn't go up, that Megan and Dr.Mulvey may admit me based on my symptoms. Crap. I promised to tell them the truth about how I am feeling. I will never jeopardize my health.
Tad needed to see me again
I called Dr. Mulvey about 0730. "You know you need to come in", he said, "I know, I really am sick and I'm okay with that."He called over to One North and discovered they had no beds available. He said he would call the ER and let them know I was on my way and get me into their room right away. The front desk lady had no idea who I was, couldn't understand my name, wanted my insurance information, and everything before they would entertain the idea of seeing me. She told us that have a seat in the lobby- the lobby where sick people were coughing. I told her I had no neutrophils and I'm very susceptible to germs. She didnt care. I sent Dr.Mulvey a text telling him about the situation. About a minute later someone came to take us to a private room without germs(well that's debatable).. We stayed in that room for about four miserable hours. The CNA wanted me to get into a hospital gown which I refused because I was shivering so bad.;I literally thought my body was going to fall apart bone by bone, muscle by muscle. Despite my pleas, they wouldn't even give me extra blankets, they were afraid my fever would go higher than the 103 it was. Finally I was taken to 102, which is almost as nice as the room I had last week. I barely glanced around before I collapsed in the bed. I slept the whole day.
On the 12th it was time for the scheduled BMA. They sure have great timing with my body aches. As Patrick pointed out, at least it will be over! Megan did a great job as always, and allowed Patrick to stay. In and out/piece of cake . Four Down, a gazillion to go. We will find out Monday or Tuesday. I'm not exactly sure what will happen if I'm not in remission. I know more chemo, but where? Here or Mayo? These past few days have really been a blur. I've hallucinated a lot, I have had conversations with people who aren't there. And I've written pages and pages in my blog. none of which got on computer. There is something weird going on with my blog. Random symbols have appeared throughout. I promIse that when I was hallucinating i did not do this. It's going to take me hours to figure out how to fix all the work I have put in this. My excuse for the rest is a steady 103 temp and lots of meds. Horrible feeling. I will take sobriety and health over this any day. My mom came in on Friday I think. I was very happy to have her back . She and Patrick can now take turns staring at the walls while I sleep the sickness out. I took a shower yesterday afternoon and discovered my fresh locks are falling out. Just when I was getting comfortable with the GI Jane look too! Mom made Patrick and I a nice sugar free apple pie with a heart on it to go with our Valentines dinner she made. How lucky we are! She's so thoughtful and wonderful.
Today we had a visit from the friends we met at dinner that first night in Newport with Jim we actually had dinner in Deer Park, Chris and Christie came with their adorable kids. We went for a walk outside with Ringo. They were so sweet and supportive. The kind of people I can imagine hanging out with regularly. I missing all our Alaskan friends and wishing I had made more time for them, I am thankful Rick Brown is coming to be with Patrick this week, and next week I have Dorothy, my two Pam's and Holly. Thank you, Jesus for my friends and family. I am never alone.
I miss Casey and Kelsey already and my dad already. I can't even talk to Granny without crying. I am homesick.
Tomorow we may find out if I'm in remission,I am terrified.
Last night I had two of the best team members taking care of me. Sam and Logan. They both promised they would stay out of the room and let me sleep till 5:00. Guess what time I woke up? 3:00. Wide awake... I took the opportunity to fix the strange errors that appeared in this blog. Hopefully I got them all. At 5:30 there was a knock at my door. I could have been sleeping till 5:30? I have been cheated again! Who is taking a nap today?! Well I thought I would be funny and said, "Identify Yourself!" In a loud stern voice. Well it turned out it was the Vampire who was going to draw my blood. She had no sense of humor and even though I tried to explain she wasnt interested. I guess she woke up on the wrong side of the bed!
It is after 6 pm and I am waiting for Dr.Mulvey to come give me the news. Am I in remission? The wait is killing me. What an ironic thing to say. I'm sick to my stomach with nerves so badly frayed. I don't know how I can handle anymore bad news.
Today I got a new PICC. Yes another. Due to my body wanting to reject all lines, my medical team won't consider anything but a PICC. I walked in there much to the distress of the escort who dared to bring a gurney. I was warmly greeted as I walked through their doors. I told them all if they could do it right the first time I wouldn't have to keep coming back. They put this one in the left arm-the one that had the clot. the clot is gone now, thankfully.
I was taken to the ER afterwards to see the ophthalmologist for some eye issues. Nothing serious. I have chronic dry eyes and sometimes get corneal erosions. I had a slight one in my right eye today. She also discovered some bleeding in my left eye, but is not concerned.
There is no news tonight. Waiting is difficult. Lord, I ask you to keep reminding me that YOU are in control of my life. When I have fear give me courage. When I have doubt, give me belief. When I have weakness, give me strength. I know you will never leave me.
It is 0330 on Tuesdsay and I am once again "Sleepless in Idaho". My mind is racing with worry over this stupid test. Yes, it's stupid and I'm angry I am letting it fill my mind with worry, rather than let the peace of the Lord calm my mind. It seems like a lack of Faith. It's not that I have a lack of faith, but rather more of a wonder if God will choose me to be healed. He gives and takes away. What is his desire for me? How can I serve him best? Here on Earth or there in Heaven? Why me and not Logan? Why do bad things happen to good people? They just do. I want to shout from the rooftops that God has healed me. I want to live the rest of my days declaring his glory. And I will do that no matter the outcome. I expect that from you too my family and friends. You must rejoice in whatever decision God makes. I will be serving him somewhere and someday there will be an eternity where we all will be serving him if we accept him as our personal savior. I did that as a young child in Indiana. I was raised in a Christian home with Godly parents. I have never not known the love of Christ. I have fallen off the righteous path more than I can count, but there was always conviction for my sins because I knew how deeply wounded our Lord was watching me choose earthly pleasures over him. For those I have hurt, I sincerely apologize and ask for your forgiveness.
I have promised you honesty. I am no hypocrite. What you see is what you get. I am a woman with deep love for her family and friends. I love my God and I believe there is good in everyone. I want to help you see God through me. He is so awesome.
While still waiting for news, Mom, Patrick, and I took Ringo for a 1.8 mile walk. I'm thankful the hospital allows me to walk outside. I feel better getting fresh air and seeing my precious buddy. He was beyond ecstatic to see me. He talked so much to me. I think he was saying, "mommy why do you keep leaving me?"
I received a call from Dr. Mulvey this afternoon. The BMA results show NO blast cells! That is fantastic news. The bad news is we don't know if I am in remission until my counts recover and I have BMA number five. I'm guessing that will be amother two weeks. At least I should be able to sleep better tonight knowing Leuk has been struck hard.
We have another visitor! Patrick's childhood friend, Rick, flew from CO to see us. We enjoyed a nice walk together and shared a delicious dinner that my wonderful mom made. I have insisted that Rick must take Patrick on an adventure tomorrow. He must get out of this hospital and have some fun.
I was wrong about sleeping better. It's 0400 and I have slept maybe 30 minutes tonight. Here's the deal, I need someone to distract the medical staff and someone to have a getaway car ready. And someone to have a bottle of wine ready for me.
I have played Words with Friends, watched TV, painted my nails, prayed, tried to envision sleep. Nothing works.
February 18- after no sleep, I still can't nap! I agreed to try a sleeping pill tonight.
I made a promise to myself, my family, and my medical staff that I would not ask about getting out of hospital early. I broke that promise today. I was abruptly shut down by Megan. Boy, she can be fierce! When I told her my stomach was hurting worse, after I asked to go home early,she was a bit incredulous that I had asked. I have met my match, lol. I am here until my ANC is at least 500. It's still zero. I have a slumber party planned for next week! I have four friends coming to be with me. But, we will just have to visit here. Maybe there will be a miraculous rise in my counts. I hope so. I am beyond disappointed. I am alive, basically healthy, and loved. It will be okay.
I got a visit from the dietician today. I promised I would try a 3:00 snack of Glucerna. It's absolutely disgusting. I can't do it. Rick bought us all lunch today from a place called "Meltz". Everyone but me loved it. All food tastes weird. I don't really even have an appetite, but when I do try to eat, I can't because of the yucky taste. One thing I can eat is bacon....They have the best bacon here at the hospital. Woman can live on bacon alone.....and milk. I like milk.
I had a visit from Carol today. Carol is the only patient I have met in the hospital. She has AML too. She looked great! She's in complete remission and happy to be home. She gave me two adorable new hats! She told me she still suffers from ruined taste buds and she's been home a month. Ugh.
Patrick and Rick are out sightseeing today. I am so thankful Patrick has so many friends to support him. He has been the most amazing husband during this process. He barely leaves my side. It's good for him to get away from this madness of "hurry up and wait for counts to rise". I don't have a choice- he and Mom do and they both choose to be with me. Have I mentioned lately how blessed I am? Our support team rocks. God is good.
February 19- I tried Trazadone last night for the first time. I was desperate for sleep. If I don't have sleep, they will have to transfer me to the psychiatric unit. Some people told me it works great, others warned me I would have ill effects. I bravely swallowed the pill at 9:10 pm and hoped for the best. Patrick stayed with me, hoping if he were lying next to me I could relax, shut my mind off, and go to sleep. At 10:30 I exclaimed, "It's not working!" He told me to relax and give it a chance. I had just drifted off when I heard the nurses at my door. It was time for my IV antibiotic and vitals check. I then decided to go to the restroom. I distinctly remember plugging in Tad when I came back to bed. A little bit later I woke up hearing Patrick get out of bed. " Where are you going?" I asked. He replied, "I'm plugging in the IV pole, it's beeping." I then proceeded to tell him I knew I had plugged it in and couldn't figure out why it was no longer plugged in. A short time later I woke up to the sound of beeping. Tad was not plugged in! I watched Patrick plug him in. Is my new room haunted? Is this another cruel joke to keep me from sleeping? Will I ever sleep again? I laid there listening to Patrick snoring. The poor guy was exhausted trying to help me sleep, but all I could think of was he was now partly responsible for keeping me awake. I woke him up and in my most loving wifely voice I encouraged him to go home and get some rest. I tried to make it sound like I was most concerned about him. He wouldn't leave me. A short time later I woke him up again and in a not so loving voice, I informed him I couldn't sleep due to his snoring. Yet he still laid there. I started thinking about asking the nurses for another room for me. But then I remembered "there was no room at the Inn." About 0330, I believe, I heard the door open, then shut. I was irritated. The nurses promised they wouldn't bother me! Then I realized Patrick was no longer in bed. He had slipped out like a thief in the night. Now at last it was quiet. I dozed off again. My wonderful nurses left me alone till almost 0600. I woke up with a headache and felt nauseous. How unfair is that! I didn't even get to over indulge in a yummy alcoholic beverage and I still woke up with a hangover. I begged for Tylenol and anti-nausea meds. Sleeping pills are not for me. The good news is Dr.Mulvey said I could try a glass of wine tonight to make me sleep. My sweet nurse, Kristina, told me the orders were written for me to bring in wine and share with all the nurses.
Continuation of care in the hospital-visitors galore
It is the night of February 19th @ 0120, so technically it is the 20th. Patrick and Rick spent the evening with me and I had a glass of wine-medicinal purposes only, of course. I sent Mom home in the late afternoon. She was falling asleep. That woman is the hardest working woman we know. There is no way we can get through this without her. Not only is she a HUGE emotional support for us, but she also takes care of the everyday needs such as; laundry, cooking, cleaning, and dog walking. I am going to miss her so much next week, but she needs a break just as Patrick does. I know how hard it is to be the support system in the hospital. It wears and tears on the mind. When Logan was in Children's Hospital on Seattle, we all took turns, or shared the time together, taking care of Logan. I know how emotionally draining it is to sit around and watch. I am so grateful to have the same support as Logan.
My WBC doubled to 200 yesterday and I am thrilled. Normal is over 4k, but by gosh, it still doubled. I am going to look at this as a positive thing. I believe we can pray it right up! Come on ANC's! Get to 500 so I can be released! I have a party or two to attend! Okay, so it's not like a raging kegger or anything, but five women in a house sounds amazing and I don't want to miss out! My friend Laura agreed to be the videographer for our new dance video. That will take place either here in the hospital or out in the street in front of the house. I am beyond excited. It is the little things that keep me positive and happy.
Yesterday (Thursday) I had the pleasure of several visitors-two of which were unexpected bonuses. I had Mom, Patrick, and Rick, Laura, Reeva, and Jan! Laura brought an amazing Asian lunch buffet and I actually ate a big plateful and it tasted good! She also brought me a new, very cute hat. Rick and Patrick left about the time Laura arrived. They had some secret plan to go shopping. It's not too often you see guys giddy about going shopping. Well Rick just had to buy me something cool. Patrick admitted they had planned to go to Cabelas, but they stopped in a leather shop downtown first. There they found the perfect gifts; gorgeous furry slippers and an amazingly beautiful fur hat! I felt like royalty as I walked around the floor decked out in glorious fur. I pranced around showing off as red blood cells were being infused.
Speaking of red blood cells, I feel so much better after the transfusion. I could tell I was pretty low. My walks are certianly not as energetic. There has been no dancing. Yesterday was the furthest I have walked since the infection. I managed 2.71 miles. I try not to beat myself up for not walking four plus miles per day. I keep reminding myself that I am recovering from chemo, I am very anemic, and I was very ill just a week ago. But I also don't want to use that as an excuse, so I will continue to push myself. It will be three miles today!
I know you want to hear more about the wine. To be honest, I had to choke it down. It didn't taste good. It wasn't the wine, it's my darn chemo damaged taste buds. But it did the trick- I got sleepy. I fell asleep anout 9:45 and slept till 12:45. I have gotten three solid hours! I am pretty sure I can sleep more. My nurse Kristina tucked me in like a momma tucking in her little child. She assured me she wouldn't bother me till 0550. If she walked in here right now and caught me blogging, I would probably be in trouble.
I was up till 0400 and then I dozed fitfully; thankful for those three hours. And the wine. I'm thankful for the wine. I saw both Megan and Dr.Mulvey today. Dr.Mulvey mentioned how well I am doing. "How well???" I asked. I thought maybe he was going to tell me he would let me go home early. I then looked over at Megan, who quickly mentioned the whole 500 ANC requirement. I tried to brush it off and pretend I wasn't trying to negotiate. After all I told them I wouldn't!
I spent the day walking, getting a platelet transfusion, playing a new game with Mom and Patrick that Aunt Connie sent, working on taxes, and nasically just killing time. I said goodbye to our friend Rick and got a promise from him to come visit us at the Mayo Clinic when it's time for transplant.
Darci from the Mayo Clinic called me today to ask the staus of my remission. I told her we would be doing another BMA when my counts come up. She then proceeded to tell me they have been looking for a match and there is no one that matches me. They are even saying my brother isn't a half match, so we can't mix his marrow and cord blood together which was the plan if we couldn't find a match. So basically I have no idea what they are going to do with me. It sounded like they are waiting to see if I am in remission before they start looking at the cord blood registry. I am frustrated. I am scared. I am angry.
2/21/15 @0100- sleepless night again.... Brush it off, I told myself. It is out of your control. I'm not giving up, but I am going to stop worrying. I'm taking back control of what I can. I contacted www.bethematch.org to ask them what it took to do a community bone marrow drive. I have organized several drives, but that was when the Blood Bank of Alaska was in charge of bone marrow drives. It's all different now. My concern is they are going to charge a fee for the community drive. They allude to that on their website. It doesn't make sense though because anyone between the ages of 18-44 can get a free kit and get on the registry. Of course I have to wait to hear back till at least Monday. Everything is a "hurry up and wait" game.
In one of the drives I organized, a sweet young lady was registered. Caitlin was a very close friend of Logan's. She was devastated to lose her friend and wanted to do something in his memory. When she was just a young adult, she signed up to become a bone marrow donor. It was just a short time before she matched someone! It was amazing. Caitlin bravely went through the whole process. Her marrow was removed via blood stream. It was infused into the patient and the patient survived. Because of Logan, Caitlin was able to save a life. Oh how I would have given anything to have been someone's donor. My whole family signed up and all of us were disappointed we never matched anyone, I was an avid blood donor too and am so sad I will not be able to donate blood again. I am used to giving, not taking. But now I am begging; someone please save my life.
2/21/15- 0230 and I am once again wide awake. I know lots of people with insomnia. They function just fine. I will be ok. I have hospital insomnia. It's curable by being released. Maybe I can tell Megan and Dr.Mulevy that they can be guaranteed a 100% chance of curing me if they release me. Of the hospital insomnia anyway. No, I don't think they will buy it.
I walked over three miles today. I feel my strength returning. I haven't danced in days, but it's coming. I can feel my legs twitching to move. Maybe I should start a Zumba club here! That would tone me back up! Hmmm. At the very least I need to organize a walking club. I mentioned it to a few people, but so far no response. I can hold a whistle in my mouth under my mask and blow it to motivate people to walk faster.
I have had a new nurse in training the past few nights. I can tell Tonya is going to be a really good nurse. Tonight at midnight I pulled my nerf gun from under the covers and shot at her. The darn dart went by and she didn't even notice! I loaded it up and shot again. She barely made a noise, picked up the dart, and handed it back to me. She said, "I have four teens. Nothing scares me". I forgot my darn duck call at the house. I bet that would scare her! She just proved she is not easily rattled. She will do fine.
It is now 0800 so it seems natural to be awake. I just keep pretending I slept. Mind over matter- if I say it enough I will believe it. Dr.Reaves, the on-call doctor, just came to see me. He instantly exclaimed, "you look so much better than last week!" I said, "I really must have been sick because I don't remember you at all." He said he came when Mom had spent the night with me. He ordered me more red blood cells as I have dropped once again. He ordered my IV fluids be stopped during the day. For the first time in my life, my BP is high and the fluids are likely the culprit. Another concern is my arm is really hurting and the hematoma popped up huge while getting BP checked. If it isn't one thing, it is another! I guess we can just use my leg to check my blood pressure. My poor veins.
Michele, my day nurse, just told me she is a leukemia survivor. She had ALL at the age of 8, and AML at 15. She had a bone marrow transplant. She is doing so well and is 11 years post transplant. I am encouraged.
11:30 p.m.- I managed a total of maybe 1.5 hours of napping this afternoon. I was thrilled that I was able to sleep during the day at all. That isn't normal for me. My pattern has been up all night, up all day. I fell asleep fairly early tonight, but woke up at 11:00 wide awake. Hospital Insomnia sucks. I will call my Nurse, Charles, at midnight so he can hang my bag of antibiotics. Logan, my superb CNA, will come in with him and do my vitals. They "tag-team" me every night, trying to help me be a successful sleeper. It's a nice thought, but no matter what the good intentions are, it doesn't seem to work.
Gary got here last night and leaves early tomorrow afternoon. I feel like I didn't get enough time with him, I was so groggy all day and kept falling asleep. It's his voice! He has such a soothing voice...We did have a great conversation last night that really helped me understand Dr.Mulvey's point of view about staying here until it's time to go to the Mayo Clinic. This hospital is awesome. I am on an oncology ward and the nurses are highly trained. They know me. They know what to look for, and they are aware of any subtle change in me that may indicate a serious problem. Gary has a BMW and he takes it to the same place to get its oil changed. He said "I could get the oil changed anywhere, but I take it to the same place because they know my car and they can foresee a problem and take care of it before it becomes worse." Something finally clicked with me. I have had great continuity of care. To interrupt that now, for a short season in my life, may end up being detrimental to my health. I hurt because I want to go home so badly. I miss my family and friends. I miss my animals at home. I miss my job and co-workers. I truly love my Alaska life and I want it back. But patience is a virtue. First step is to get me back in remission and then Dr.Mulvey will let me go home for a visit. For now, that has to be enough.
One of my nurses, Andrew, came in this afternoon to visit. We ended up having a nerf gun fight. He told me he had planned to come in this afternoon and jump on my bed to try and scare me, but my current nurse, Michele, threatened his life if he woke me up. He just wanted to pay me back for some tricks I played on him. I don't know what he is referring to; I am such a nice, compliant, and perfect patient. Before I hit the call light for my antibiotic, I need to come up with a plan to scare Charles and Logan....
2/22/15- I slept more last night then I have in days. I may have gotten four hours. Despite the fact it was broken sleep, I feel more energetic. Perhaps it is the private shower I now have! Yes, I got moved again. I may not have a big room, but I do have a wardrobe to put my clothes and a beloved private shower that heats up better than the shared ones. I had been lamenting for days that I was unable to have a shower that was actually warm. It's the little things in a hospital that keep one from going insane.
Yesterday morning before my shower, I took out my insulin pump site because it was time to change it. I had it in my left hip area. I didn't realize it was bleeding. I jumped in the shower, washed my bald head and started drying off. I looked down at the floor and saw all this pink colored substance. I didn't have my glasses on, so it took me a couple seconds to figure out what was going on. I looked at my hip and saw my precious blood squirting out like a geyser. I was already due for blood that day! Luckily the shower was right next to the nurses station. I wrapped a towel around me, cracked the door, and said, "I need a bandaid!" One of my favorite nurses, Jess, came in with a bunch of gauze and a bandage. I thanked her for her ASSistance. Crisis averted.
All modesty has disappeared out the window since becoming sick. One person after another comes in my room each day to listen to my lungs, my heart, check my pulses, and ask me if I have had a bowel movement. That question is usually asked in front of all my guests. I will often have a CNA on one side checking my vitals, while a nurse is on the other side messing with my IV. The CNA's will put the thermometer in my mouth while the BP cuff is on one arm and a finger on the other hand has the device to measure my pulse and oxygen. That leaves the CNA to hold the thermometer in my mouth. It makes me feel like a newborn calf getting a bottle of milk. This morning I was still hooked up to Tad and I was rummaging through the wardrobe to find cute pajamas to wear today. As I stood there stretching the tubing as far as it went, it suddenly dawned on me that I am like a chained dog. Or we could compare me to a prisoner who has been restrained due to threatening escape. It's not a good feeling. I just laugh it off though, otherwise I will go insane. I have cabin fever like you wouldn't believe. It looks like a sunny day so perhaps a walk outside with Ringo would be the prescription this patient orders.
@2:30 p.m. I have gone for three walks, but none of them with my precious Ringo. I have walked 3.35 miles so far today. My goal is now 4. Right now I am getting one of the lumens of my PICC cleaned out. It won't flush, so they are using a medical Draino product on it.
Patrick leaves at 6 tomorrow morning. I am so happy for him to get a break, but boy, am I ever going to miss him! We don't have a return ticket for him yet. I am really hoping my counts come up soon, the next biopsy shows remission, and I can go home for my birthday on March 10th. If that is the case, he can just stay home and wait for me.
I finished my day with 4.25 miles after getting to walk Ringo. Despite four walks today, I have the worst cabin fever. I am so tired of being in this small room. I really need out of the hospital. I don't want to have a gazillion people checking on me. I need OUT!
2/23/15 @ 0430- I had a bit of a psychological breakdown last night. I have an idea of how a prisoner might feel. It is not a good feeling. Patrick talked me down though. He spent the night with me since he left this morning. I was able to sleep off and on since about 8:00 last night. Even though the sleep was broke up with IV antibiotics, vital checks, etc., I feel like I got more sleep than I have had in days.
I got weighed at midnight last night. I am now at my lowest weight which is not impressive. I am afraid to face Megan in a bit. The thing is, I have been eating a lot! My taste buds are cooperating and food tastes good again. I guess all the walking is just taking off the weight. It doesn't really make sense because I exercise a whole lot more at home and don't overeat. I maintain a healthy weight there.
I have two visitors coming today. First, Debbie from church in AK will be here, and then Laura is coming. Tomorrow Dorothy will be here and the other three will arrive Thursday. It's going to be a busy week! I won't have time for psychological breakdowns thankfully.
Happy birthday to my awesome brother whom I miss so much. I am glad we got to celebrate when he came to see me last month. I am missing so much. Next year will be a party everyday after I can put all this behind me and live like there is no tomorrow.
4:30 p.m. I have been able to take lots of naps this afternoon. As soon as I am free from "grogginess " I will work on that 1.5 miles I have left to go. Today's goal is just 3.0 because I just don't have a lot of energy today. My hemoglobin dropped again, but not low enough for a transfusion. Sure does make me tired though.
Debbie came today and brought me all kind of new toys! I rubbed my hands with glee. Watch out night nurses! I have nothing to do but lie here and think about how to scare you in the middle of the night. Laura was unable to make it because she hurt her already hurt shoulder! I am praying for relief of pain for her. Tomorrow Dorothy is here. My dance card remains full. I love all the visitors.
Patrick made it home okay and he is babysitting Ollie. She is such a joy to be around and I am sure she is helping to occupy his thoughts away from worrying about me. I haven't seen her for almost a month and I am having Ollie withdrawals.
Today's devotional from Jesus Calling" begins with " Be on-guard against the pit of self-pity." I will need to read this several times today as I struggle with being stuck in this prison.
Dr. Mulvey came by tonight. I wrote a note to him on my board begging to get out. I was shot down. However; he said I have monocytes now which indicate my WBC should be going up. I am praying I am out of here by Thursday. How wonderful that would be.
2/24/15 @0430- I actually slept quite a bit tonight and took a few naps during the day yesterday. I have been up since 0330 because Tad was beeping. I told Sam she was fired because that doesn't happen on Charles's shift. I think she was getting even with me for scaring her at midnight with my shooting panda. We have called a truce and she fixed Tad, but here I sit unable to sleep. She drew my blood a half hour ago. I am anxiously awaiting the results. Will I be rewarded for my extreme patience and have a huge jump in my WBC's? Okay, so maybe I don't have extreme patience, but I haven't hurt anyone yet and so far haven't offered a bribe. Tomorrow marks two weeks of being in here. If only I could have cake, we could have a party. I like cake.
I fell back to sleep anout 0545. I woke up at 0615 when Sam came in with my antibiotic. At least I got quite a bit of sleep last night. I should be able to go another three miles today. My counts came back. No transfusions needed today. My WBC stayed the same. Three days in a row that it has been at 300. Three days in a row it was at 200 so I'm sure it will go up tomorrow. Come on, marrow! Produce me some healthy cells so we can kill Leuk!
Sometimes I hate looking in the mirror. It reminds me my life has been permanently changed. How I long to be home visiting with my family and friends, cleaning my house, volunteering to help others, and working. Seeing my bald head in the mirror saddens me. I can't stop thinking about how Logan must have felt. He was just a young kid and he missed his friends too. He longed to be home and normal as well. If I hadn't relapsed, I would be almost done and home.
I went for my morning walk to cheer myself up. Dillon from patient transport hunted me down and took me for a CT scan of my sinuses. I can't escape this place or its staff. I think they have a beacon buried in my PICC line so they can keep an eye on me......
2/25/15 @0500- I slept in today! I had a pretty decent night. I had a different CNA and evidently she wasn't aware I have a "don't call me, I will call you" agreement with the nurses and CNA's. She woke me up shortly after I fell asleep. I will admit I wasn't super sweet to her. She quickly left and came back at midnight when I called for my antibiotic. She did my vitals then. I don't try to be difficult, but I am desperate for sleep.
My CT scan turned out okay. It shows the chronic sinusitis problem I have, but nothing acute and no infection or fungal infection which is what they were checking for. The ENT doctor came to my room and stuck a camera up my nose. It was not the most pleasant experience, but since this journey began I have had worse.
I only managed a little over 2.5 miles. My body told me that was enough and I needed to rest. I am very good at listening to my body. Megan came to see me yesterday and although sympathetic about my mental state from being in here, she reiterated it is for protection of my health and I am staying till my counts rise.
Dorothy arrived late yesterday afternoon. It is so good to finally be with her. We caught up a bit before I started dozing off. Mom had brought in a delicious dinner and she must have put something in it to help me sleep. I kicked them out about 8:30 and I was ready for bed. I look forward to tomorrow with my three other gal pals arrive. Despite the circumstances and being in the hospital, we are going to have fun. I sure will miss my mom though. She leaves tonight. She is more than ready for a break.
2/25/15- My white blood count was holding steady at 300 for three days. Today I was sure it was going to be 500. I just knew it would be! Imagine my disappointment when I saw it lowered to 200. I feel like have been punched in the gut. I am doing everything I can to get well. Why is my body not cooperating?
As I struggle I take these words to heart:
Rest in my presence,allowing Me to take charge of this day. Do not bolt into the day like a racehorse suddenly released. Instead, walk purposely with Me , letting Me direct your course one step at a time. Thank Me for each blessing upon the way; this brings joy to both you and Me. A grateful heart protects you from negative thinking. Thankfulness enables you to see the abundance I shower upon you daily. Your prayers and petitions are winged into Heaven's throne when they are permeated with thanksgiving. In everything give thanks, for this is my will for you. (Jesus Calling)
So the bottom line is, no matter how frustrated or disappointed I am, I cannot change my circumstances. What I can do is change my attitude. I have so many blessings in my life. I need to be focusing on them and enjoy every single day and be grateful I am alive and can share my life with my family and friends. I will have a grateful heart.
I am super excited that a bone marrow drive is being planned for me at home. I am grateful for all the ones willing to help make it a successful drive. I have organized several so I know it is a lot of work. I feel so loved knowing others are willing to do something that can potentially save my life or someone else's.
Megan came in today and we talked about my drop in WBC's. Plan is to wait and see till beginning of next week. Day 28 is Thursday, so I should be coming up. The leukemia could have come back, or I could just be slow to recover. I found out if I am in remission, they will wait till my ANC is 1,000 and platelets are at least 50,000, then will start consolidation treatment. I would be hospitalized from Monday to Saturday and consolidation chemo would be every twelve hours on Monday, Wednesday, and Friday. If I am not in remission, they would talk to the Mayo Clinic about getting me on a clinical trial.
I have tried to put all my fears out of my mind today. I have gone on two walks so far-one with Ringo and Dorothy. I have a quarter mile to go before I reach my three miles so will be doing that as soon as Dorothy gets back from dropping Mom off at the airport. Yes, my mom left for a week. My usual caregivers are getting a break. I miss them terribly, but they are leaving me in good hands. Tomorrow my gal pals will be here and the party begins. Mom told me to behave before she left.
2/26/15@0400-Not much sleep for me tonight. Maybe it was the two naps, or maybe just too much on my mind. I'm worried about my poor mother who has been stuck in Seattle Airport all night. She's only going to be home for a week and this delay is stealing away precious time of relaxation for her.
Sam just drew my blood a few minutes ago. I, along with many others, have prayed over my blood. I have visualized my marrow spurting out healthy cells. I believe God can heal me and multiply these healthy cells. I pray he showers blessing upon me and takes away Leuk's hold on me. What is his plan for my life? I hope and pray it is to be healthy again and share my story with others.
I feel like my bone marrow is playing some twisted, cruel, and agonizing game with me. My WBC went back up to 300. Could it not give me 500? I'm back to where I held steady for three days. The waiting game is not easy.
I think God has a spectacular way of reminding me to be patient and trust in him. Today's devotional from Jesus Calling says:
" I am leading you step by step through your life. Hold My hand in trusting dependence, letting Me guide you through this day. Your future looks uncertain and feels flimsy-even precarious. That is how it should be. Secret things belong to the Lord and future things are secret things. When you try to figure out the future, you are grasping at things that are mine. This, like all forms of worry, is an act of rebellion; doubting My promises to care for you.
Whenever you find yourself worrying about the future, repent and return to me. I will show you the next step forward, and the one after that, and the one after that. Relax and enjoy the journey in My presence, trusting Me to open up the way before you as you go."
How perfect is this! I have been stressing about my counts, the bone marrow biopsy, whether or not I am in remission, going home for a visit, when my next treatment is, etc. God is in control. Letting him take over would be so much easier. I wonder how many times I need to read these words before I completely internalize them. Hopefully not many!
Three of my four Gal Pals have arrived. Pam S., Dorothy, and Holly have spent the day with me. We laughed, caught up with one another, and took a walk. They just left to get dinner and to pick up Pam M. from the airport. I am so happy they are here, but I sure wish we were just gals on vacation together. This hospital isn't an ideal place to visit, but it's the only option I have. Suck it up, Marre.
I wish I could just suck it up. Truthfully, the walls are really closing in on me. No matter how much company I have, I am filled with sadness and anxiety. I need out of this hospital. It is hard enough to be away from home, but to be basically locked in a small room each day has become unbearable. My walks are nice, but I can only manage 20-30 minutes at a time due to getting overheated with a mask on. I try to count all my blessings and be grateful each day. But it is so hard when all I want is to go home. Dr. Mulvey said I can go home for a couple weeks if I am in remission. Two weeks at home would let me re-group and prepare for the battle that lies ahead.
2/27/15- I'm not sure why I keep getting shocked when I see my WBC has not increased. In fact today it lowered again. I have faith everyday that it will rise. I believe God hears all our prayers. I can't understand why he's not just making them rise which will indicate I am back in remission. He must have a plan, but I don't like not knowing it. It is important that I surrender all things to him. Maybe this is his way to show me I am still trying to control my situation. There a popular saying out there, "Let go and let God." It makes sense, but is not always easy to do. I am away from everything familiar and comfortable. I will trust Him.
Dr.Reaves came in and encouraged me. He reminded me I have had so much chemo that my body is fighting itself to make those healthy cells. None of my medical team members have given up on me, so why should I give up? Despair- be gone in the name of Jesus! I refuse to live in the darkness. My nurses are quick to know when I am sinking into depression. The encouraging words help get me through. Everyone wants to see me beat Leuk. With this much support, how can I not? Logan never gave up and neither will I.
Soon my gal pals will be here and we will party like it's 1999. We are going to dance, walk, and LAUGH!
My time with my Gal Pals has been going great. We spent all afternoon practicing for our newest video. Laura was the videographer and did a great job. We finally got a "take" we were happy with. In between the video I burned off too many calories just dancing around. I felt carefree and happy. I was so tired afterwards that I had to send them away for a bit and take a nap. I woke up to dinner prepared by them and a bottle of wine sitting there. "Well maybe I can have one glass- for medicinal purposes of course." It wasn't long before I got sleepy again. I wish I had more energy. I envisioned late night talks, but I just don't have the energy. Dorothy leaves tomorrow and I wish I had been able to fight off the exhaustion and just visit.
2/28/15- Back up to 300. Man, it's frustrating, but I feel peaceful. This is out of my control. The battle belongs to the Lord. I will continue to trust him. Maybe there is a really good reason why it is taking so long. Maybe if my counts went up and I was out of the hospital something bad would happen. I have to believe this is orchestrated, not a chaotic mess.
Yesterday I ate two bowls of oatmeal, two pieces of bread, biscuits and gravy, lasagna, and corn bread. I lost more weight. I have a new low again. I just don't get it. I consume a lot of food and calories. My weight is the envy of every woman out there, but I don't recommend the leukemia diet. Be happy with your weight healthy women!
I have a new/old issue I am dealing with. I had osteomyelitis in my left mandible as a child. Every once in awhile I will have a flare up and it hurts. I now have advanced degenerative arthritis. Well as luck would have it, (not that I really believe in luck) it has flared up again and I am in a lot of pain. I am taking Tylenol around the clock. But hey, at least my eye feels better!
Today I had to say goodbye to Dorothy. Tomorrow Holly and Pam S. leave.I wish I had more energy! Today I am so tired I haven't even walked. My body says rest and I am obeying.
It is time for bed. My Gal Pals went back to the house and I'm still basking in the glory of having such wonderful friends, I love how they accept me as I am. They allow me to express myself and don't judge or try and tell me what to do. They listen and accept my feelings that can change from one minute to another. We had so much fun today. Although I wasn't up to masking up and leaving the room, we had fun playing games all day. It felt so good to laugh! For an evening I felt like me again. Just another gal hanging out. The only time we were brought back to reality was when a nurse would come in to give me medicine. But at least the nurses are cool! I love how they remember my friends names and where they are from. People here truly do care.
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