This is second part of blog. First is my Journey. 3rd is day 100
My attempts to increase my white blood count
THIS IS CONTINUATION FROM MY JOURNEY
Yeah, like I have any control over my numbers. I try exercising, I try resting. The fact is, I have no control and I have to be patient. Things are certainly not going in the right direction. I refuse to give in to the self-pity and despair. It is what it is and I will deal with it. I will not go down without a fight. I'm ready to just have the bone marrow biopsy and know what is going on inside my marrow. It is the uncertainty that is the hardest.
Today Pam S. and Holly leave. We will have a great day. I envision some dancing....
Once again "Jesus Calling" has the perfect devotional for me.
"When something in your thoughts or life makes you anxious, come to Me and talk about it. Bring Me your prayer and petition with Thanksgiving, saying, Thank you Jesus for this opportunity to trust you more. Though the lessons of trust I send to you come wrapped in difficulties, the benefits far outweigh the costs.
Well-developed trust will bring you many blessings, not the least of which is My peace. I have promised to keep you in perfect peace to the extent you trust in Me. The world has it backwards, teaching that peace is the result of having enough money, possessions, insurance, and security systems. My peace however,is such an all-encompassing gift That is independent of all circumstances. Though you lose everything else, if you gain My peace you are rich indeed."
Sure I have to remind myself of this when I start getting scared or anxious. I won't pretend that doesn't happen. I am human. But I am also a woman with great faith. I believe God can heal me. Whatever his plan is for me I will accept it. I just don't want to leave my family. I worry about them. I love them.
3/2/15- My counts are still 200. Things aren't looking good. The pain in my jaw has increased and I can't help but wonder if the Cancer has spread to it. I want a bone marrow biopsy today. I need to know so we can plan for the next step. I'm sure there is still hope, but I need to go home for a couple weeks and visit with family and friends.
BMA is scheduled for tomorrow morning. Patrick couldn't take the wait so he called Megan. She assured him it could just be because my marrow was completely empty on day 14 and just taking time to rebuild. The wait is excruciating. We have to transfer from here to MN and that's no easy task. Plus I need to go home for a visit!
Pam M.and I walked Ringo this morning. My first time out of my room in two days. I'm glad the nausea is over. It snowed briefly here!
I had a chaplain come in today. She assured me my feelings of fear, concern, and lonliness are normal. I have not lost my faith. I may not understand what God's plan is for me. But I have not lost my faith. I will continue to march on and do my best. I still long for results to be positive for remission and home on my birthday. I feel like I need to be cut some slack. It's a lot to deal with being so far from home and those I love.
3/3/15@0430- I have already showered today. Megan will be here around 0715 to do my bone marrow aspiration. Since I can't shower for 24 hours after, I decided to shower before just in case I fall back asleep. Pam will be here with me. She leaves this afternoon to go back to Germany. Mom will be back early this evening.
Last night Patrick and I did Face Time while he was in the house. It was nice to see my house. It helped me visualize coming home. I don't even mind that he rearranged the furniture. He told me he is sleeping on my side of the Bed. I think that is sweet.
The BMA went as good as it could go. I will hopefully find out Thursday night. Everything is in limbo. We need to be out of the Idaho house by the end of the month. We don't know when we are going to be in Rochester, so we can't really reserve a place there. We don't know if I can come home next week or not. Right now it's not looking good because my WBC is still 200. I had an MRI on my jaw today and don't know the results of that yet. They put so many drugs in me that it made me very tired and nauseous. I don't even feel like getting out of bed. I didn't even get to visit with Pam because I kept falling asleep. Mom should be here in a couple of hours.
On a positive note, www.bethematch.org wants to take mine and Logan's story viral and hosts bone marrow drives all over the country. If you are interested, call Tanya at 425-785-1840 to set one up. I need a match and my ancestory is northern European.
3/4/15- I was so happy to see Mom last night. We were catching up when the door opened and there was my daughter and Ollie. I had no idea they were coming. What an amazing surprise! Meghan could tell how sad I was and booked a last minute ticket to come cheer me up. She and Ollie can only stay until tomorrow, but I am going to enjoy every moment.
Dr.Mulvey came in last night and said the MRI showed arthritic changes, but nothing new and concerning. I will just have to deal with the pain . When my platlets are higher I can take Ibupophen which helps with the inflammation.
Today my WBC is still 200. I am approaching Day 35 from when last chemo began. I am frustrated. Once again my plan isn't going to happen. When will I learn to just trust God's plan? I never cared about my birthday before so I am not sure why it's such a big deal for me to be home anyway. It's just that this year may be my last birthday and I wanted to be with my family. I try to remain positive and hopeful. But my body isn't cooperating and I can't even find a match with a registry of 11 million people. I am such a fighter and I won't give up without fighting to my last breath. I tell myself to accept God's healing. I imagine healthy cells spewing out of my marrow. I just don't see any positive progress. Okay. Enough! I just read encouraging posts on my FB page and I refuse to wallow in self pity! As soon as this antibiotic is done, I am going to take a shower, dress in something cute, put on a snazzy hat, and visit with my mom, daughter, and granddaughter. Maybe we can go for a walk with Ringo too. I haven't seen him in a couple of days. I just need a change of scenery.
What a great day we have had! There is no better medicine then spending time with my mom, daughter, and granddaughter. We laughed at Ollie all day. She is so darn funny and repeats everything that is said. She charmed all the nurses.We went for a walk around One North and she started walking like a monkey- complete with monkey sounds! She is hilarious. She tore my hospital room apart. What a mess it was. My nurse, Kristina,couldn't stand it and started cleaning and organizing after she left. Ollie is like a hurricane that blows in, but much more enjoyable!
I also got to spend some quality time with Ringo. He appreciated it!
The results should be in tomorrow . Whatever it is, I will trust God and move forward to the next step. I sure am praying for remission though!
3/5/15- it's 0530 and I didn't really sleep last night. I dozed a bit,but sleep alluded me. Years ago, Casey bought me a beautiful blanket with a big angel on it. He gave it to me after Logan died. I take that blanket with me everywhere. It has traveled the world with me. Last night I confess I held it in my hand like Linus. I also snuggled with the stuffed dog that Patrick gave me, I didn't want anyone to see that this old woman was acting like a ten year old. I closed my eyes and pretended I was home surrounded by my family. Sometimes I get so homesick I can barely stand it. I've never spent so many consecutive nights away from Patrick. I don't like it. I know he would be back in a split second if I asked, but I refuse to take this break away from him. Even though it's hard on him too, to be away from me, he needs this.
Tonya just drew my blood. i again prayed for a miracle. Please, Lord,heal me completely. Let my WBC jump to 2000! Let me be healed and continue to do your works here on earth. I trust you, Lord. Whatever your plan is for me I will accept it, but I do ask for complete healing.
My WBCis still 200.
3/6/15- Yesterday was a fun-filled day complete with baby snuggles and a walk with my precious daughter. I was very sad to see them go. Those two days sure picked my spirits up though. Last night Reeva and Renee came and had dinner with Mom and I. I am not sure if people understand how much Mom and I both enjoy the visits. It helps pass the time. I have now been in here 23 days.
Last night about 6:15 Dr.Mulvey came in to give us the news we had been waiting anxiously for. Unfortunately we will have to wait longer because the bone marrow biopsy was inconclusive due to it still being mostly empty from the chemo. However; of the few cells in there it was determined they are healthy cells and not blasts! That is very encouraging. Now we just have to pray that my bone marrow continues to build healthy cells. I am still at 200 WBC. But for the first time I am okay with that. We can't rush perfection! Perfection is what I believe will take place. Perfect, beautiful white blood cells coming out of my marrow. At first he was going to let me take some shots to boost the immune system. After thinking about it he decided we can't do this because there is a potential it could encourage blast cells. He did say he will consider putting me on oral antibiotics. If I do well on them and remain fever free he will release me back to the Idaho house. There is no going home until my counts come up. But at least we will be able to pack up our stuff and look for another temporary home since we have to be out by the end of the month.
I get to leave the hospital tomorrow! As long as I don't have a fever anyway. I don't anticipate having one since I only had one when my line was infected. So far PICC number four is cooperating. I walked out in the courtyard today just in my pajamas-no coat needed! It got up to 64 today. I cracked myself up as I was walking thinking about how I used to be so vain. I would never have left my house without dressing nice and doing my hair. Now I walk around outside in pajamas and a hat. The pride is gone. I have been humbled. I keep getting these emails about re-growing hair. Yeah, like that is going to do be any good! About the time I start getting hair again, they will inject me with poison and it will fall out again.
Sometimes I feel so sad I can hardly stand it. I have a deep lonliness inside of me reminding me how far away I am from my family. Patrick is spending the weekend at our cabin and I long to be in our peaceful getaway place. I had a talk with God this afternoon and am feeling better. I really think getting out of hospital will help so much. I won't be stuck in a small little room staring at the same four walls. If only Patrick were here to make it even better.
3/7/15@0600- Knowing no one was going to come in last night unless I called, gave me psychological rest and I slept most of the night. It was fabulous! I woke up at midnight, per usual, and chuckled rather manically as I thought to myself, "I am NOT going to tell them I am awake. Vitals can wait!" I went back to sleep knowing I was almost free. What a relief to rest and know I will soon have more room to walk around in. Can you imagine how happy Ringo will be to have me back? He must feel I have abandoned him. He is a lucky dog though as he has had many women loving on him. Each of my friends developed a special relationship with him. He adores his grandma too. She took him for a bath yesterday so he would be all clean for me.
Yesterday was the first day in three weeks that I didn't have to get chained like a dog. I don't like getting hooked up to Tad. I really do feel like a chained animal. I can only reach so far when hooked to him, unless I unplug him as I move around my tiny room. At least the last week it was only a few times a day: baby steps.
I guess we can say I made some progress today. My WBC is back to 300. I pray it doesn't tease me by going back to 200. But mostly I pray that every new cell made is a healthy one. Let me be cured, Lord! My amazing doctor was texting me at 0645 to ask what medications I need refilled. I asked him why he's up so early on his day off and he replied, "working on your discharge paperwork!" He told me my ANC is 100! I missed that when I was looking. Things are going in the right direction. Thank you, God!
I am out!!! Ringo saw me through the door and cried like a baby. He's just staring at me adoringly. I am so happy to be out. Mom said I have to rest for a bit. But then I am going to take him for a walk. I also want to start packing. We have so much to take home, but also I have to take a lot to MN. Sorting through stuff will at least give me something to do,
3/8/15- My first day out of the hospital in 23 days was wonderful. I was able to walk around from room to room without wearing the dreaded mask. My mother made sure I got plenty of rest. I feel so lazy! My back is so sore from having two bone marrow biopsies in two weeks. Most of the time I don't really notice, but when I get up, I realize how stiff I am. I wish I could go back to water aerobics to help me get back into shape. But alas, I have gone from a prisoner in an institution to a prisoner on house arrest. Now I know how it feels. But I am so grateful to be out of the Big House. Ringo and I did walk 1.5 miles yesterday. The sun was shining gloriously in the sky and it was so warm. I don't take anything for granted anymore. I appreciate all the little things and I am determined to enjoy every moment.
I wish I could say I slept last night, but I woke up at 3:00 wide awake. At least no one is coming in to take my vitals, blood, and weigh me. I can take a nap today without fear of being interrupted. I have so much on my mind. I keep visualizing and praying for my marrow to fill with healthy cells. When will that happen? All in God's timing because it sure isn't hsppening in mine. As soon as my counts go up there will be another bone marrow biopsy. I'm thankful Megan is so good at them. It's not the most comfortable thing I have ever done, but it could be far worse. Will we get the news our hearts desire? Will I be in remission? Will they find a match for me? Will I get to go home for a week? Where are we going to stay for this next round of chemo? Is it better to go ahead and transfer care to MN since we will be there for transplant? How long will my job be held for me? How will Ringo adjust to four months without me? Will Olivienne remember Her grammie? It's no wonder I can't sleep. I have so many questions and only time will tell the answers. Most of the time I can pray for peace and accept the peace God offers. Some times I am stubborn and hold on to the fears and worries.
Today I spent the day just lying around. I didn't even take Ringo for a walk. I will have more energy tomorrow. I think part of my low energy is my mood- I am so darn homesick and miss my husband and family. Although I am out of the hospital, I can't go do normal things due to my immune system. No church, no stores, etc. I need a kick to the butt to change my attitude and to start feeling grateful for what I do have. I am alive. I have so many people who care for me. I am out of the hospital. So many things to be grateful for.
3/9/15- Psalm 20:4-5:
May he give you the desire of your heart and make all your plans succeed. We will shout for joy when you are victorious and will lift up our banners in the name of our God. May the Lord grant all your requests.
In my devotional from Jesus Calling, I am reminded that God must be put first and I should never desire anything more than him. I cannot let my desire to go home be more than a closer relationship with him. So I ask him to remind me to focus on him and fill my heart with comfort and peace as I eagerly await the results of my counts today. I don't believe God is upset with me for desiring to go home for a week. I do know he wants me to let him steer this battleship.
After I read this devotional and prayed for God to help me trust him more, my phone rang. It was Darci from the Mayo Clinic. She wanted to know if I'm in remission. I told her about my bone marrow being too empty to tell. She told me if I am in remission that they would like to avoid giving me more chemo. She said it would take about another month to get me matched with someone or cord blood. She then told me she didn't see any reason I couldn't return home to Alaska while waiting! I feel filled with hope once again. Every morning when I wake a different praise and worship song is in my head. There is no better way to stay connected to the Lord!
I leave soon for the clinic. I can predict I will need a platelet transfusion today. My nose is bleeding a lot. I am also out of breath so red blood cell transfusion may also be on today's agenda.
After over five hours in the clinic, I have been set free. My platelets were at the cut off level for a transfusion, so the decision was made to get them tomorrow. Tomorrow is my birthday and what greater gift could I get than the gift of life? The person who donated the platelets really will be giving me a gift. I was very dehydrated. My pulse when standing was at 148. I got two bags of fluid and can now walk without gasping for air. The really good news is my WBC went up to 400! Finally, it is going up. Megan cautioned me that she doesn't feel it will go up fast. It's okay: slow, easy, and perfect.
Kootenai Hospital has this great system where I can log on and see my counts each day. Somehow on the 5th of March I had missed that blast cells were reported in my peripheral blood draw. Megan told me today that I shouldn't worry about it because no blasts have been reported since. Her news took me by surprise. I think my reaction took her by surprise. I was calm and feeling peaceful and immediately refused to cave into panic. I believe I am in remission. God is rebuilding my marrow perfectly. She called me later to tell me there ar no blast cells into today's blood draw. Thank you, Jesus.
It is 66 degrees here today and Ringo and I enjoyed a nice walk. I am happy.
3/10/15- My birthday. I'm in another state away from all but my mom and dog. I have never been away from Patrick on my birthday since we have been together. But I am okay! I am filled with such hope and peace that I am doing okay. I slept really well last night which was a great gift! But the one I am most excited about is the one I read about in "Jesus Calling" this morning:
"You are Mine for all time-and beyond time, into eternity. No power can deny you your inheritance in Heaven. I want you to realize how utterly secure you are! Even if you falter as you journey through life, I will never let go of your hand."
Don't get me wrong- I have no plans to leave this earth yet. A year from now I want to be making an entry in this blog and telling you how well I am doing and how much of a worthwhile journey it was. But it sure is wonderful to have one part of my future, the most important part (eternity) secured.
Its going to be a god day, I just know it.
And it HAS been a great day. I was in the clinic for 3 hours today getting platelets and fluids. I was disappointed that my WBC remained at 400, but thankful it didn't go down. Tomorrow I will need a red blood cell transfusion. After the clinic, Mom, Ringo, and I drove to Kellogg, Idaho which is about a 40 minute drive. It's a quaint little town. We walked around and soaked up the sun. I'm loving this warm weather. Perhaps I will bring it home to Alaska when I come back. I feel loved by so many and feel confident that things are going to work out okay.
Tonight Mom and I were watching TV when we heard a knock at the door. It really startled me because we were not expecting anyone. For a moment I felt very vulnerable. I used to feel strong and capable. Now I feel weak and powerless. My first thought was how can I defend my mother if it's a bad person at the door? But before I could panic, I heard happy voices asking for the birthday girl! It was my wonderful friends whom I have only known since October, but have been a tremendous support to me. Reeva, Renae, Tawnya, and Colleen were here to throw me a surprise party! They came with gorgeous silk flowers, a balloon, Minnie Mouse ears, and a cake. What an amazing feeling to be so loved and cared for. I am truly blessed.
3/11/15- This morning we will be doing a teleconference with bethematch to prepare me for transplant. Part of me doesn't want to do it. It makes it more real for me and brings back memories of Logan's transplant. I wish I could be more like him. He never complained. Before the transplant I was his "photographer", capturing every moment during the pre-transplant phase. They really put you through the ringer by making sure every part of the body can handle what they are about to do to you. It's the radiation I dread the most. I remember Logan getting a migraine from it and vomiting, I remember how much my heart broke for him and how I wished I could take his pain away. Sixteen years later I will know how he felt, but I couldn't protect him and keep it away from him. If only he were spared. He was such a good, sensitive, and compassionate person. I would say it's not fair that he got cancer, but his words still ring in my ears. "Mom, it's not fair anyone has Cancer." Never a selfish thought from my first-born child. What an example he was to me. He just accepted it and dealt with it. I desire to have the heart of a child.
Mom and I spent a little under three hours at the clinic today. I had to get a red blood cell transfusion since my hemoglobin was very low. We were please to see the jump in platelets after yesterday's platelet transfusion. I have so many different people's blood in me that I may notice a skin color change or maybe grow a beard. Just kidding. We were very pleased today that my WBC went up to 500. Thrilled is more like it. It has a long way to go, but my bone marrow IS recovering, hallelujah.
I don't have to be back in the clinic until Friday. I'm going to celebrate by wearing a sweatshirt. No one will need to access my arm or take my blood pressure. I feel like such a rebel. Hearing I had a day off made me think about work. As a full-time employee, I was thrilled every time there was a holiday and I got to stay home with my dogs. Now my heart desires to be back at work and helping my co-workers and those we supervise. I don't need any more days off. I need to feel useful and helpful. Some may find it strange that I miss work so much, but I truly love my job and pray they hold my position for me.
Tonight Channel 11 news (anchorage) aired an interview they did with Patrick, Meghan, and Angelia. They showed pictures of Logan and told a bit of his story. My incredible husband shared his emotions in such a touching way. I can't imagine how hard this is on him. First Logan and now me. As I have said before, this is much harder on my family than it is on me. I wish I could take away their pain. I can say this for sure- God has blessed us tremendously. When we need anything, our family, friends, and strangers are more than willing to hold us up. When the darkness closes in, HE is there and he sends his earthly Angels to support us. We are grateful.
3/12/15- I just got off the phone with Meghan. My daughter cracks me up. The poor thing just realized how much like her mother she is. She decided to take matters into her own hands and call the person in charge of the bone marrow search. The Mayo Clinic has definitely not been good at keeping in touch with us as often as we would like. I feel like I have been in the dark for the most part. I realize everything is contingent on whether or not I am in remission, but it's hard to keep going with the flow when we just don't know what is to come. Meghan was told they are scheduling me to come to MN for another three days of evaluation and then will send me home to get ready for transplant. I was not told this. I was under the impression I was going home to AK and then returning for evaluation just before transplant. Meghan informed the person in charge that they cannot just leave me hanging and they need to be calling me and informing me. I told her I want her with me during this whole process. She's an amazing advocate!
I can't help but wonder if they are still searching for a match or not. They seem fixated on cord blood. They haven't even received Casey's kit back. What if he's a half-match? His stem cells can be mixed with cord blood for a better outcome. What about the potential 10/10 match? That's much more ideal. There are bone marrow drives everyday. Someone out there has to match me! I take comfort in knowing all these people registering, in memory of Logan and in honor of me, may be able to help another desperate person looking for a match. I am all about helping others and pray that someone following my story is able to help another person live.
While waiting for the phone call I stared out the window and gave thanks for the beautiful, sunny day we were having. I imagined the sun kissing my skin as I took a long walk with Ringo. I got up in anticipation and my heart started beating rapidly and I was having trouble catching my breath. I knew instantly what the issue was; I was extremely dehydrated again. I just can't drink enough to keep my body hydrated. This was my day off from clinic! I almost didn't call. What about my sun kissed skin and dog? I decided to be responsible and called the clinic and left a message requesting an appointment to get fluids.
Someone from the Mayo Clinic called me while I was waiting for a return call from the clinic. She informed me she was passing my information on to her assistant so an appointment could be scheduled. I informed her I was neutropenic, a bone marrow biopsy still needed to be done, and I had to buy a plane ticket to get there. She told me she would "check with the doctor" and get back to me. I wasn't holding my breath as I have heard that before with no results.
In the meantime the clinic called back and told me to come on over to get some fluids. They checked my blood pressure and heart rate while I was lying down, sitting up, and standing. My heart was racing which indicates dehydration. Soon I was hooked up to an IV with fluids running through my body. The nurse drew my blood too. I was pleased my ANC went up to 200, but I was disappointed my WBC remained at 500. The decision was made to go ahead and give me another red blood transfusion too. I spent 4.5 hours in the clinic on my day off. This day off sucked.
Dr. Hogan himself called me while I was in the clinic. He said he had talked with Dr. Mulvey and they decided I did indeed need to come to MN next week. It seems the insurance won't approve the transplant unless I have extensive testing to verify that my body is healthy enough for transplant. They feel that even though my immune system is compromised, I will be fine to travel. It's frustrating to me because "it's too dangerous to travel home" when neutropenic, but not to go to Mayo Clinic. I get the fact that they know I will be well taken care of if I get sick in MN. But it's irritating as heck when all I want is to go home. Dr. Hogan said someone would call me back with an appointment. No one called of course. I have to buy my ticket as well as Patrick's ticket coming from Anchorage. I am hoping they call first thing in the morning.
Megan called me tonight to discuss the Mayo trip. She suggested I buy a one way ticket. It's likely they will do a bone marrow biopsy down there. If I'm in remission, I can go home while they work on getting me stem cells. If I'm not I won't be able to leave because they will have to try and find something to quickly kill Leuk before transplant. So now Mom and I are trying to pack up the house, sort through stuff that needs to go to AK and what we want to take to MN. I'm trying hard to "go with the flow". It's very hard because there is no concrete plan. Everything is contingent on whether or not I am in remission. That hasn't been determined because my counts haven't recovered. Please, Lord, heal me by killing Leuk! Let me go home to my family.
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I walked out of the Post Falls Clinic for the last time today. A wonderful working relationship with my medical staff has ended. These are people I have seen on a frequent basis for the past five months. I trust them because I know they care about me and have done everything they could to help me. Leaving them was hard. Saying goodbye to Megan was difficult. I will be having a bone marrow biopsy at the Mayo Clinic on Tuesday. Megan isn't going to be there to perform it. I know how it feels when Megan does it. What if this new person isn't as good or gentle? At the risk of sounding like a small child; I don't want to do this without her.
At 7:00 this morning I got the call I was waiting for. Mayo Clinic called to tell me my first appointment will be at 0715 Tuesday. I am to report to the ninth floor of the Charlton Building to pick up my itinerary. They make it sound as if I am going to a conference rather than particparte in a bundle of medical tests. This is going to be a big change from my experience at Kootenai Clinic. I was told a bone marrow aspiration will be done that day and was asked "with anesthesia or without". Anesthesia? Dang I was tempted! I have had five with no anesthesia. It seemed wimpy to start that now. It's like giving birth without an epidural for five children verses having one for the sixth. When I told Mom and Megan they told me I was crazy for not taking advantage of it. I am not sure why I always have to prove I can handle pain.
After the notification of appointments, I worked on getting my ticket from Spokane and Patrick's from Anchorage. It was too tough to work it out to meet up in Seattle, so we will reunite in Minneapolis. I will be there 2.5 hours before him. I guess I will find a quiet corner and read a book. I was able to find a fairly good deal on a hotel, but still have to rent a car. Mom and Ringo will leave on Wednesday. Once again I have to say goodbye. I just pray the results of my bone marrow biopsy show remission so I can come home until a match is secured for me. I really need to see my family and friends. It will help me get my head on straight before I move into this next phase.
Today my WBC was up to 700! My ANC is 200. I am slowly making progress. My big jump from getting platelets on Tuesday has slowly been dwindling away. Due to the weekend and the fact I won't be able to be seen on Sunday or Monday, the decision was made to give me another platelet transfusion today. I also got more fluids as I continue to be dehydrated. Tomorrow I will go into the Coeur d'Alene Clinic and receive more fluids. Patrick said I just need an oil change and a tune up before traveling a thousand miles. I am happy that Dr. Mulvey is going to stop in to say goodbye. I sure don't want to leave without thanking him one last time.
Tonight I must start what I have been procrastinating doing; packing all this stuff up. Five months of stuff. I just stare at it and helplessly wonder where to start. All I want to do is curl up in a ball and pretend none of this is happening.
3/14/15- Mom and I worked tirelessly packing suitcases for a few hours last night. I can't keep up with her energy level. I collapsed on the couch and convinced her to sit with me. She never seems to run out of steam. We made some good progress, but we have a lot to do still. Patrick once again took care of some small details that helped with my stress level. He forgot to tell me these plans until I mentioned my concern about making everything fit in the car. He swooped in like my Knight in Shining Armor and fixed it all!
I will be going into the Coeur d'Alene Clinic at 0900 today to rejuvenate by getting fluids. As much as I detest my PICC line, it's so nice not having to get poked each time I get a blood draw or receive blood, platelets, or fluids. I want to walk the 1.5 miles there, but I'm not sure my mom will let me. She is very over protective and a bit bossy. I'm trying to figure out a good way to ask permission.
This afternoon we hope to get together with our friends here in Coeur D'Alene. They have been so wonderful to us and we don't want to leave without saying goodbye. Tomorrow our friend, Jim, is coming to see me before I leave. I am so thankful to have such loving and supportive friends. I am blessed.
I just read the itinerary sent to me by the Mayo Clinic. We were so busy yesterday that I hadn't got a chance to review it. I assumed it would say the same things the lady who called told me. I should have known better. The lack of communication with the Mayo Clinic is disturbing. The person who called told me I had appointments through Friday the 20th. According to the itinerary,that is not the case. They have me scheduled through Wednesday the 25th. Thank goodness I listened to Megan and bought a one-way ticket. But I made reservations for a car rental and hotel and those will have to be changed. There is nothing inexpensive about this process.
As I try to calm myself I am reflecting on all the good things that have happened to us since I got diagnosed. We have been blessed beyond measure. People care about us and want to help. A great example of that is today's bone marrow drive in Palmer, Alaska. A group of my friends got together and organized this drive. They did so because they care about me and want to raise awareness about the need for bone marrow donors. There are so many people out there without a match. My friends feel helpless so they are honoring me in this very special way. I pray that someone registering today will be able to save someone's precious life. I thank each and everyone of you who takes part in this endeavor. May the glory of God fill your hearts.
I am sitting in the clinic hooked up to fluids that will help me breathe a little better. I'm a little nervous about going three days without any extra help. I wish I could drink enough to stay hydrated. Dr. Mulvey just came in to say goodbye. I held back the tears as I attempted to express how much he and Megan's support, along with everyone else who has taken care of me, has meant to me. There just aren't enough words to adequately say what my heart feels. He reassured me that he will be keeping tabs on me and this is not goodbye. He seems to believe I am going to be okay. I trust him and believe that too.
I am so grateful to all the volunteers and potential donors who are taking part in the bone marrow drive today. The last update I got was 120 registered! That means there are better odds of finding a match for all of us on the registry, I'm not the only one out there desperately waiting for that perfect match. I am amazed at the support of my friends, family, and community members. Thank you all.
200 people are now on the national registry. I'm overwhelmed with gratitude for all who participated today. Logan lives on. So many came because of our story my husband shared on the news. There are many good people out there who just want to help. What better way to help than saving a life? Thank you.
More help is coming our way. Tonight our friends Reeva, Renae, and Tawnya stopped by, I was pretty much passed out on the couch after packing all day. Mom was like the Energizer Bunny. She kept going, and going, and going...Our wonderful friends volunteered to bring a truck to load up our stuff we have packed up. Trust me, there is a LOT of stuff. I'm so relieved to have help. Everything wears me out and it doesn't take much for me to feel weak and tired. I hate feeling helpless. But I am grateful for the help and company of such great friends.
3/15/14- It has been one busy day. Mom and I finished packing our belongings. Reeva and Tawnya were here at 0930 and loaded up Reeva's truck with our Minnesota stuff. We drove over to my former Alaskan neighbor, Jan's house, and stashed it in her garage. After that, Reeva and Tawnya loaded up my car with all the stuff that will get shipped back to Anchorage. Then our friend Jim came over and I got to visit with him for a couple hours. I got to say goodbye to most of our incredibly wonderful friends here in Idaho/Washington. I made a promise that when I am healthy I will return and visit. Even though our friends did the heavy work, I was absolutely exhausted and napped all afternoon. Tomorrow I must get up and shower at 0230. My plane leaves at 0545. I know Mom and Patrick are worried about me traveling by myself, but I will be okay. If I need to, I will ask for assistance. Yes, I really mean it. Tomorrow afternoon I will be reunited with my husband after three long weeks. We are moving forward. Although I am apprehensive, it's good that the next process will soon be started.
3/16/15- So it begins...My next phase has started. I am on the plane to Minnesota. God, please let those healthy cells come in. Let there be no leukemia present in my body. Please let the best match be found for me. Please give me the courage I need to go through this again, this time as the patient. Please comfort my family. They are scared, concerned, and weary. I ask you to bless all the people in my life who have prayed for me and continue to care for us. This is in your hands, Lord. Let your glory shine through me.
We made it to Rochester. Reality has hit me.. I wanted so badly to avoid this step, but I don't have a choice now if I want a chance to live. Tomorrow I have several appointments, one after another. The bone marrow biopsy (number 6 in five months) will be at 0940. I don't know what to expect from them here. I hope they are good!
It was great to be reunited with Patrick. He remains very positive and encouraging. I made him promise that he will take me home for a visit whether or not I am in remission. I suppose we will know on Friday when we see my doctor. At that point we can make some concrete plans. It is so hard to not have a concrete plan to follow, but we are doing our best.
My emotions are like a roller coaster. It was hard to say goodbye to my Mom and Ringo today. Mom has been amazing- always taking care of things and supporting us in so many ways. Sometimes I'm really positive and other times fear takes hold. I never felt like I took my health for granted before, but now I realize I didn't appreciate how well my body worked before Leuk came in.
3/17/15- It's 0430 MN time and I have been awake for an hour. Too many thoughts running through my head even as I sleep. After six weeks of sleeping apart, due to me being in the hospital for three weeks and Patrick home for three weeks, I had to adjust to sharing a bed again. Clearly Patrick did too because he punched me in the jaw (yes the one with arthritis) as he slept. I had to check and make sure he didn't knock a tooth loose. It was a hard hit, but I survived. When he wakes up I am sure he will tell me all about this awesome dream that made him punch me. He has some strange and violent dreams.
Being punched is probably the least of my worries today. Today I will get poked, prodded, and examined by a multitude of people. One thing I wonder about is when they are going to fit in blood and platelet transfusions if I need them and when are they going to check to see if I need IV fluids. There's nothing on the "itinerary" that shows a time for transfusions and my schedule is so booked it doesn't even allow for time anyway.
So it begins. I am waiting for my first appointment. I am an emotional wreck. I feel like such a cry baby. I can't hold back the tears and I don't even know why I'm crying.
Turns out my blood sugar had dropped to 44. That can explain part of my emotional collapse. I can't eat for quite sometime because of the testing. It's pretty hard on an insulin-dependent diabetic. I got to eat in between having 17 tubes of blood drawn and my bone marrow biopsy. When I had talked with the lady scheduling the appointment, I told her about the pre-meds Megan gave me. Since the procedure is done awake they had given me a pain pill and anti-nausea meds to counteract my reaction to the pain pill. The lady did not relay that information to anyone, so my bone marrow biopsy was done with just a local. The nurse doing it was really nice, fast, and efficient. It hurt, but was over quickly. I then was able to sleep for two hours while getting IV fluids. Now we are waiting to see the allergy doctor. Evidently the medicine they like to use post-transplant is the only one I am allergic to. They are going to try and desensitize me.
My labs are better than they were on Saturday. My WBC is up to 1200 and ANC is 310. Progress is good. No blasts were found on peripheral smear. That news is encouraging, but until Friday, I won't have the final report of the biopsy.
3/18/15- Last night was excruciatingly painful for me. With the exception of the first bone marrow biopsy I had, none have been as painful for me as this one. I am having a hard time walking and sleep alluded me. I could not get comfortable. It was a huge production getting in bed, let alone turning over. I can't figure out what the difference in soreness is from. Biopsies 2-5 were done by Megan and while I had some soreness, it was mostly unnoticeable. I look like a little old lady as I hobble around.
I think today we will be more comfortable going from one place to another in the palatial kingdom of the Mayo Clinic. Right now we are going to start with breakfast.
Oh what a day. We have been at the clinic for ten hours. I have had an electrocardiogram, chest x-Ray, sinus x-Ray, renal testing, a meeting with the bone marrow coordinator, a doctor visit, and IV fluids and blood tests. The good news we got today was yesterday's bone marrow biopsy showed no signs of leukemia cells! Although that is super good news, we still don't know if I am in remission. My counts have to be up to tell for sure. The other good news I got is I get to go home for a visit next week! It's unsure how long I can stay but probably a couple of weeks. I am so excited I can hardly stand it! We were warned that the chemo and radiation before transplant will be like nothing we have seen yet. I need this break to prepare mentally.
We are getting used to the big facility and are finding the people we encounter seem to have a compassionate heart. We are thankful for that. What I am not getting used to is how tired, exhausted, and sore I feel. My bones and muscles just ache and I find it difficult to walk. It really wreaks havoc on my moods as I am so used to walking quickly and efficiently. Dr. Hogan suspects it might be from the weight loss changing my body structure. I have lost about 20 pounds. My legs are so skinny that I can put both hands around them easily. I don't like looking in the mirror because the mirror mocks me, showing how sick I have become.
3/19/15- 0430 and I can't sleep. I was so exhausted last night that I had to leave Patrick sitting at the table while I rested in the car. You would think my body would just keep resting when the opportunity arose. Our day starts at 0900 with an echocardiogram. After that will be more blood tests and fluids. The appointment I am dreading the most today is the spinal tap. As of yet I have not had to have one. I watched them done to Logan on a regular basis. I hope they allow Patrick to be with me. Having someone there during my bone marrow biopsies helps tremendously. I know it will help during the spinal tap too.
Patrick has been an amazing support. He sits and waits without complaining. He finds something encouraging in every bit of news. He is hopeful and that's what I need right now. Yesterday he gave one last attempt to protect me from further pain by asking what would happen if I didn't have the transplant. The doctor emphasized I would have a minimal chance of survival. Leuk is very aggressive and he wants to kill me. We will arm ourselves with medical technology, strong meds, and radiation to fight back. Leuk is not a worthy opponent. He may be strong, but we will defeat him.
My resolve has been shaken in just a few hours. I feel defeated. Maybe Leuk will win after all. My increase in counts diminished greatly today. All the progress I made is gone. I can't go home on Tuesday. I try to be brave. I try to remember God is in control, but right now I feel defeated. I need a break and for some reason I am not getting one. I haven't been home in four months. I just want to go home.
I am waiting for my red blood cell transfusion. I've already had a platelet transfusion. In between transfusions I had my first lumbar puncture. Logan had dozens and I always hurt for him. Part of me believes I deserve to have leukemia because my son had to endure all the same things I am going through. The other part of me fights it because I have two other children and a grand baby to live for. Not to mention my husband, parents, granny, brother, and all my family whom I love so much. When Logan said its not fair anyone has Cancer, I agree with him. When I get angry or frustrated I think about all the moms out there who are suffering because of their childrens diagnoses. I ache for all of us.
3/20/25- Yesterday was an eleven hour day. I hope today won't be as long. I was told to be here at 0730 this morning for a special blood test. I reported to the desk and was told to report to room three. I am sitting here in this cold room and no one has even acknowledged me. Today I feel nauseous. I have a slight headache due to the lumbar puncture yesterday. I again felt disgusted looking in the mirror at the shell of a woman I used to be. I feel so vulnerable and fragile. As I was walking up to Station 74- my new home away from home, I decided that no matter what I look like or how I am feeling, I will believe I am healed. I will no longer walk in fear. I will believe and trust God no matter what my body tries to tell me.
We had another full day of appointments. Our day ended with an appointment with Dr. Hogan. He was encouraging about my counts going up soon. He told me to stay hopeful. All my tests came out well. For a woman with leukemia and Type 1 Diabetes, I am very healthy! He said if my counts continue to show an increase I can go home for a week. If they don't, I won't be able to. He's hoping we will start this process of transplant in the next few weeks. It's going to be a long and difficult process, but as Meghan told me, I will just focus on each day so I don't get overwhelmed by the whole process.
We checked out of the hotel and moved into a house we plan to rent during our stay in Rochester. The house is lovely and is within walking distance of the clinic. We met the owner tonight and he is a really nice man. We look forward to meeting his family too. I was told today that they expect me to be walking on a regular basis and adding in other exercise as well after transplant.
I keep thinking about my beloved job and how much I miss it. I have to fight back the panic at the thought of losing it because I will be gone so long. Not only will I miss the work and my co-workers, but losing insurance will devastate us financially. I keep telling myself to trust God as I know he will provide for all of our needs.
3/21/15- Today is Casey's birthday and I wish I were there with him. His favorite meal is ribs and how I long to cook for him. The world I know keeps on going even when I am not there to participate. Thats the way it should be, but I hate missing out on the every day lives of my loved ones.
Today is Saturday and we have an appointment at 0930 for blood tests and maybe fluids. They can't figure out why I need fluids everyday. I had to buy compression socks yesterday. Dr.Hogan is hoping that will help increase my blood pressure and alleviate they symptoms I am having.
Finally some good news! My white blood count went up to 1000 and my hemoglobin went up as well. Platelets went down to 50,000 and ANC dropped to 310. Despite the drops, I feel encouraged. They elected not to give me fluids today and I have tomorrow off! We are going to take a walk in a few minutes so we can become acquainted with the neighborhood. I feel really well today and I am so happy about that.
We got a walk in, but I was so cold we didn't walk too long. It's only a 9 minute walk to the clinic from this house which is terrific! After our walk I took a nice, long nap.
Meghan bought her ticket to come here in May. I am so excited about that. Hopefully I will be home next week and that will hold me over till we visit again in May. I hope to have many visitors while we are here.
3/22/15- Today we are going on a road trip. After keeping a mundane schedule for the last week, I have decided to be spontaneous and carefree. For a moment we can imagine we are just a couple people going on a day trip. To me it's like finding the pot at the end of a rainbow, because we will be reunited with friends I hold dear to my heart. Back in 1998, while at the Ronald McDonald House, we met Tim, Diane, Jennifer, and David. I was instantly drawn to this neat family. They were warm, kind, friendly, and just plain nice. When I looked into David's eyes, I saw nothing but goodness just flowing out of him. The feeling was almost tangible. His soul was filled with goodness. He reminded me so much of Logan. I watched how he and Logan treated the younger kids. They were both so kind and were loved by everyone there. David had Ewings Sarcoma which is a bone cancer. After a time they went back to Altoona, Iowa as there was nothing else the doctors could do for David. I will never forget the day he died. I grieved for him, my heart hurt for his family. This young, beautiful boy with his kind soul was gone. I hesitated to tell Logan. I wanted to protect him from the pain of losing his friend. But I decided he deserved to know. I called other members of Ronald McDonald House out to the garden and we held our own memorial service for sweet David. Four months later, Logan joined his friend, David. Both boys loved to fish so I think about them fishing and hanging out just being boys and having fun.
Since 1998 I have seen the Burget's twice; once when my mom and I took Meghan and Michelle to Iowa, and once in Alaska. It will be good to be reunited with this family whom we share a bond with. No one can understand the pain of losing a child except another parent who has lost one.
3/23/15- We had a wonderful visit with our friends. It was good to get out and do something non-hospital related. When you think of someone being just three hours away, it seems like nothing. But when you multiply that by two for the round-trip, the hIney starts hurting from all that sitting! We stopped in the historic district of Ames on our way back to Rochester. I really liked that town. I love a town with a good downtown area, especially a small town where everyone knows and cares about each other. I may not live in a small town anymore, but I can't forget that the people in my town love and care for me too. Even though the Mat-Su Valley is so spread out, there is compassion and concern for neighbors. Last night I had this incredible dream that hundreds of people in the Valley laid down and everyone was touching arms and were connected to me. I was filled with the love and strength from everyone. I could literally feel the heat pulsing through my body. It's so awesome to have the love and support of so many.
Today I am anxious, nervous, and excited to see if my counts are going up. If they are, then the Mat-Su Valley will be getting us back for a week or so!
Our first meeting of the day is with the radiologist who will be determining the rate of the total body radiation I will have before transplant. This is what I have been dreading the most. I remember Logan's experience with pre-transplant radiation. He got very ill with a migraine and vomiting. It's important they use the highest dose of radiation my body can tolerate without being permanently damaged. All cells in my bone marrow will die before transplant. The hope is the new cells will take over and fail to produce malignant cells.
Although they never found a match for me on the national registry, they did find two cord bloods that will work. History is repeating itself as that was what Logan got too. The good thing about using cord blood is there is less graft versus host disease. GVHD is when the new stem cells attack my body telling it that its a foreign entity- they are in control now! GVHD can cause mouth sores that go all the way into the organs of the body, skin rashes, eye issues, etc. it can be temporary or permanent. Some people are disabled for life after having GVHD. The bad thing about getting cord blood is it takes longer for engraftment so my immune system is suppressed even longer.
Since there was no match for me I had hoped we could use Casey's stem cells and mix with cord blood. He is a half-match for me. However, they don't have a study going now to do that. Since there is no study, they can't use the highest level of chemo and radiation pre-transplant. Because Leuk is so aggressive, they want to fry him. I will have a better chance of defeating him if we zap him and poison him with the strongest doses my body can tolerate. Casey and I are both disappointed.
I just met with the radiologist to hear about the plan they have for me. I will have radiation two times a day for three days just before transplant. I heard about all the horrible damage full body radiation can do to me. I heard about the side effects-nausea, mouth sores, fatigue.... All I can say is this process sucks.
But here is the great news! My WBC went up to 1100 and my ANC went up to 420 and I get to go home Wednesday night! Thank you, thank you, Jesus! I don't know how long I can stay yet, but I am beyond excited.
3/24/15- Today I had my bones measured so they could "custom fit" radiation doses for me. Ugh, I don't even want to think about that. I will likely be in-patient when it's done because it will be given at the same time I am getting high-dose chemo. At least being in-patient means I will be able to get IV anti-nausea meds around the clock.
I had labs done today and my WBC and ANC remained the same. My hemoglobin and platelets both went down. I am getting a platelet transfusion at 0800 tomorrow. I am still set to fly to Alaska! Our plane leaves around 5:30 pm. Casey will be picking us up. Tomorrow I will be home in my house, with my animals, sleeping in my bed. I am so grateful to God for making my counts rise so I may have this opportunity.
3-25/15- Today I get to go home. Tonight I will be in my house! Tomorrow I will see my family. It has been four months since I have been home. I am so excited! Right now I am in a bed at the clinic waiting for the results of my counts and waiting for a platelet transfusion. My platelets were down to 30,000 yesterday and the decision was made to boost me up today before we fly. Unfortunately I am quite the klutz and I am always running into something which causes me to bruise. That doesn't help. I was hoping to be able to have my teeth cleaned while I was home, but because of my low platelets and white blood cells, I will have to wait even longer. There are so many things to consider while going through Cancer treatment. I keep reminding myself this will not last forever. By the time I am done, I will have been gone from Alaska about ten months. Right now it seems like an eternity.
My platelets had dropped down to 27,000 so it's a good thing they ordered a transfusion. The good news is my WBC is up to 1300 and ANC is up to 490! Hallelujah, we are on the right track.
3:30 pm.- we are checked in and waiting for our flight. My dad and brother both have colds and have warned me that many are sick in Alaska. I will be diligent in keeping myself protected. I was told any sickness will delay transplant. Leuk is too aggressive to delay anymore than we already have due to low counts. As much as I dread this next step, it is a necessary evil.
3/26/15- I am home. I have dreamed and imagined what it would be like and I was not disappointed. Casey and Kelsey picked me up and it felt so good to be back with them. Everything I saw on the way home was familiar and perfect. When we pulled up to our home, I felt satisfaction and happiness. I felt comfortable. I was back in the home where we raised our three children. The home where hopes and dreams were both realized and denied. The place where laughter intertwined with sorrow on occasion. My house isn't just a building; its a home. A home where I can be safe. I am content.
Last night both dogs were so excited to see us. Of course they both had to sleep with us. I had almost forgotten what it's like to have to mold my body in a twisted position so my babies can sleep comfortably. Despite the yoga positions they forced me in, I slept well as my mind was able to shut off and relax. This morning as I sit here, I keep thanking God for his faithfulness. Without him, I wouldn't have this psychological break before transplant. Thank you, Lord, for increasing my counts so I could come home. Please keep me safe and protected before transplant. Please don't let me get sick as transplant will be delayed. Please keep increasing my counts so I can fight off infections. Help me to be a light for you. Use my experiences to help others. And please give Logan a hug from his momma.
I had to laugh when my brother started texting me about staying away from sick people. He even put on Face Book thst no one should be around me if exposed to a sickness and everyone must wash their hands before touching me. Mom wrote a note and taped it to my door stating the same things. She even bought hand sanitizer for people to use and wipes for the door knobs. It's so nice to be loved and cared for. And they are 100% right. I simply can't be put in danger from an illness. I can't imagine being home and stuck in a hospital up here instead of sleeping in my own bed. That would stink!
I have spent my day with my daughter, granddaughter, and granny. I have had so much fun but I am exhausted! Who knew a nineteen month old could wear me out so much? Granny has spent the day with me because she worried I would over due It. I have some family members coming over to visit in a bit. The ones who aren't sick anyway!
3/27/15- Up at 0430 this morning. I am so happy to be home that I just can't stop smiling! Yesterday was exactly how I imagined it to be; I was surrounded by my loved ones. We had a lot of family over last night and I feel so loved. I was talking with my cousin, Matt about his upcoming liver transplant. He also will be going to Mayo. However, he doesn't know when that will be. I told him I wish it were at the same time as my transplant so at least we could be together. That would probably make the family feel better!
This morning I will be going to see Dr. Lawson at Midnight Sun Oncology. Dr. Lawson took care of Mom when she had breast cancer. He is going to take care of me while I am home. I am praying my counts came up since Wednesday. I would love for them to fully recover before they knock them back down before transplant.
My Precious Time Home
It's what I dreamed of the past four months. I am at my safe place; our cabin. This is the place I have always gone to to escape reality and relax. The place where no one can find us and there is silence. The place where we go to reconnect and enjoy the cabin we built together. It' is not big or fancy, but it is ours. To me it's as beautiful as a Hollywood mansion. I love it here. I feel like I have never left. It's almost strange to feel like time has just stopped. Like I have woken up from a horrible nightmare and it never happened. All those months away have faded in my memory in the two days since I have been home. When the panic sets in, I rebuke It. I am living for today. Today is a good day. I am home, I feel great, I have my family and friends close by.
This morning I went to the oncology office next to the hospital. This is the office where my mom was treated for her breast cancer, I got to know Dr.Lawson and have been texting and emailing him about supervising my care while I am home. I guess today is his day off. I met his partner who seems very competent and efficient. My counts actually went down a bit which I admit bummed me out immensely. I just don't understand it. I haven't had chemo since the beginning of February. I should have normal counts by now. I started to run a fever this morning, but God took care of that and it's now normal. I must be diligent about wearing my mask and avoiding sick people. If I get sick it will delay my transplant.
I still don't have a date for my transplant. Insurance did approve it of today, thank you, Jesus! However, if I run out of leave soon it's going to be a problem. I despIse not being able to be self sufficient and having to ask for help. I like helping others. It's hard to be on the receiving end. But I am so grateful. I keep thinking about how much more I can do to help others when this is all over and Leuk is dead.
3/28/15- I sleep so much better in Alaska. This is where I belong. Sometimes I get tired of the cold, windy nights during the winter, but truly, this is a wonderful state and I love the beauty that surrounds me. I love the compassion and concern Alaskans show towards their neighbors.
Today we have nothing on our agenda except for a long walk with the dogs. I have been slacking in my exercise regimen. I have been repeatedly told I need to be walking a lot pre-transplant to build up my strength. Even though my bones and muscles hurt so bad, I must walk a few miles each day. My recovery afterwards will be so much easier. I have never been one to avoid exercise, so I need to find time and energy to get back into the groove of it. I wish I had the energy and the immune system to go into the Alaska Club and do Zumba again! I loved that class. If my WBC was normal I would definitely go despite the fatigue. I doubt I could keep up or move gracefully, but it would be fun!
Everything is right in my world. My dogs are so happy to be here at the cabin and running free. We took them on a walk and they were so excited. It's quiet and peaceful. My friend, Kris, came to visit. It was so good to see her. We are having breakfast tomorrow with our friends, Rich and Gretchen. I'm so happy to be catching up with people.
3/29/15- We are back in the Valley. I enjoyed our time at the cabin so much. We enjoyed our breakfast with Rich and Gretchen today. They both are so encouraging and positive, believing I will be cured. I need to surround myself with people who believe that.
I finally got to see my parents tonight. They refused to hug me just in case they have germs. I appreciate their thoughtfulness, but boy do I miss their hugs! We had a nice visit with Casey and Kelsey. I took having family nearby for granted and I'm sorry for all the time I missed out on.
I have a very busy day tomorrow as I plan on seeing quite a few friends. I hope I don't doze off in the middle of the day. My day will start in the doctor's office for labs. As usual, I am praying my counts are increasing.
3/30/15- I am thoroughly exhausted. Kelsey and I went grocery shopping at 0700 since there are less people then. After that we went to the oncology office for labs. I knew I was in desperate need of fluids so I asked them to fill my tank. I got one liter of saline and felt amazingly well afterwards. They drew my blood and told me my WBC was up to 1900. I was ecstatic! That's a 700 point increase from Friday. But my hemoglobin was down to 5. I knew that wasn't right. They drew more blood and ran the test again. Unfortunately my WBC was still at 1200(same as Friday's). My hemoglobin came back as 7.8. That is quite a difference. I hope the second test is accurate. The good news is my ANC went up to 700. I am thrilled. I'm scheduled for a blood transfusion on Wednesday.
I had a house full of visitors today. I had McKenna, Wendy, and Sandy over in the morning. It was great to visit with these sweet ladies. McKenna made me a gorgeous quilt with Wonder Women panels! It's amazing! She is very talented. This afternoon I had several current and past co-workers come visit. I am truly blessed to have so many friends. I love hearing the words, "I pray for you everyday". God has blessed me. I am thankful.
3/31/15- Today is my son-in-law's birthday. There is a family dinner I would love to go to, but there a few people going who have colds. I can't take the chance. I did have the pleasure of Miss Ollie's companionship today. Kelsey helped me out with her for awhile which was great. I fixed lunch for my parents and brother. I am really enjoying the visiting, but I am very tired. I have a few more people coming over this afternoon. I'm going to try and get a quick nap in.
Ah the nap was wonderful! I got about an hour before Scott, Joyce, Steve, and Dorothy came over. I am having so much fun playing the socialite and entertaining people. I need to step up my game and make cookies or something! I actually started to tonight, but just don't have the stamina. I put in 3.57 miles today, chased after a toddler, visited with several people, made lunch for family, and bottled wine at Valley Winery. I'm tired!
I am still waiting to hear from the Mayo Clinic. I called today and was told they would "get back to me." They are the ones who told me I just had to have this transplant right away or my chance of success was minimal. They said since there is no match they have to use cord blood because they can't wait for more people to register on the national bone marrow registry. Yet here I am- still neutropenic and just floating around waiting for them to tell me when I have to get on a plane. Part of me is in no hurry because I love being home. Not to mention I dread "Hell Week" which is the week before transplant when they are going to give me the highest dose of chemo and radiation they can give. However, the sooner I get this done the sooner I can get back to my life. I loved my life. I loved being around family and friends. I loved working. I loved volunteering. I want to get it all back. I try to be patient, really I do! I see God moving in my life and the lives of others. I know he is in control. The human side of me just wants to organize it all because I am a control freak.
4/1/15- Today I got the call I had been waiting for regarding my transplant date. The news certainly took me by surprise. Believe it or not, I am not happy to hear I will not be having a transplant for another six weeks. I get to stay in Alaska until the beginning of May. Sure it's nice that I can be home later and will be here for Kelsey's nursing pinning ceremony. And being home a month means I can go back to work which is what I want. However, I am worried because I haven't had chemo since the beginning of February. They don't even know if I'm in remission because my counts haven't recovered. What if Leuk comes back and runs rampant? What will my chances of success be? The reason the transplant has been delayed is because they still need to get the cord blood and need to run tests on it to make sure it's healthy and free of infectious diseases. But I'm dumbfounded to hear that it's going to take six weeks. We originally were told that process would be two to three weeks. It doesn't make sense. I spoke with my nurse case manager. I want the doctor to call me and address our concerns.
I was pleased that my WBC was up to 1.6 and my ANC is 900. My HGB and platelets are stable. It shows things are finally starting to recover which is good. This is a frustrating process and when I try to control the process I get frustrated and discouraged. It dawned on me about two hours after that phone call, that I wasn't letting God control this situation. This is out of my hands. I will let him manage it all. I will continue to advocate for myself, eat well, gain weight, exercise, and keep healthy. But I am not going to stress about it.
4/2/15- Another busy day here! I have been watching Olivienne everyday while Meghan works. She is a bundle of energy. A huge bundle! I love every moment with her. I drove her around the neighborhood until she fell asleep. When I pulled into the drive, all I could think about was taking a nap too. But alas, no sleep for me.
I received an electronic message that my doctor at the Mayo Clinic is out until Monday. I am telling you, if you want to learn patience, be diagnosed with cancer. There is nothing consistent or predictable. It will either make you or break you. I will not be broken.
There are many who are disheartened to hear that the Mayo Clinic is no longer looking for a match for me. Please continue promoting bone marrow drives and registrations. Do this in honor of me and in memory of Logan. Do this to help people like me who are desperate for a match. I'd love nothing more than to find out one of you matches someone and you saved a life. Who am I to deserve a match more than someone else? I pray your generous heart expands nationwide. It may be a child, a parent, a grandparent, or your neighbor who needs a match. Each life is worthy to be saved.
I was going through my journal and read what I had written on 2/17/15. Journaling is a good way for me to sort through my feelings and process what is happening. This is an excerpt of what I wrote. " I'm struggling, not in my faith, but just in torment of not knowing if I get to stay here and serve God, or if I get to serve him in Heaven. Whatever happens, I will serve my God. I'm not going to pretend I understand why this is happening or why it's his will. But I know he loves me. I know I have a home either with my family or in Heaven with the Lord and Logan. Lord, I pray your favor upon me. I pray you bless me. I pray you give me remission and let me finish this process and survive. I want to be an example for you forever. You are a wonderful counselor, the way, the truth, and the life. You reign over all and you are an amazing God."
Six weeks later and I'm still praying that same prayer. I don't know what is happening inside my body, but I do know my God is with me. I am amazed at the faithfulness of so many who are praying for me. It's easy for us to say, "I will be praying for you", but we don't always remember to follow through. I truly believe so many are following through on their promise to pray for me. I am thankful.
4/3/15- in about an hour I will have the results of my counts today. My stomach is fluttering like I have a test to take or a job interview. What will they be today? Will we be celebrating because they have gone up? Or will we be punched in the gut because the numbers are playing games with us again? Waiting is the hardest thing to do.
i am disappointed. My counts have dropped since Wednesday. They didn't drop a lot, but they did drop. They are supposed to go up! If Leuk is back I don't think there's anything we can do since I have to get chemo and radiation just before transplant. I would be in the same boat- waiting for bone marrow recovery. We all know how well that works for me. Waiting... I hate waiting.. Everything is contingent on something else. I am still going to work on Monday. I will wear a mask anytime I am not sitting in my office. I will keep myself protected.
4/4/15- I am exhausted. I went back for fluids yesterday and slept while they were infusing. It helped with my breathing, but sure didn't give me super powers. When I got back to the house I took Ollie for a walk. I'm trying to do everything I used to be able to do, but I just can't keep up. I have no energy to clean my house or cook. We had our friend Steve and our kids over for dinner last night. I had to go lie down while the guys cooked and took care of the baby. It makes me feel incompetent when I can't do my share. Today my goal is to unpack since I'm going to be here longer. I need to clean out my closet too. While I'm at it, I am going to look for clothes that fit me enough to wear to work next week. Surely there's something in there that will work!
This morning I picked up medicine to help with my mouth sores. Since I haven't had chemo for two months, I doubt it's related to that. I ate some organtic yogurt the other day and it was really tangy. I think it's what caused it. Some times fruit causes me to get canker sores too. Going to get the medicine was mentally hard for me. I don't like going out in public because im embarrassed about wearing a mask and a hat With no hair underneath. I got in line behind a lady and she turned around and said, "I was where you were eight years ago." She went on to say that she was impressed that I was going into the community because she knows it can be embarrassing with all the stares. It was like she was reading my mind. She told me I am beautiful. Her comments brought tears to my eyes. She said she would be praying for me. What an awesome thing she did for me today. I wonder if I will be so bold when Leuk is dead and I am cured.
I am overwhelmed with the generosity of people. We have been so blessed in so many ways. We just got word that our church will be bringing meals to us three times a week until we leave again. What a gift! I am so tired at night and this will help so much. There are so many good people.
Our friends, Carol and Mike Fritz are organizing a prime rib benefit dinner to help with our expenses while in Minnesota. They also organized a similar event while Logan was sick. How amazing is that!
There are two more bone marrow drives coming up too. April 25th in Palmer, organized by our friend Annette Johnson. May 3rd there will be one held at Church on the Rock Wasilla and its organized by the queen of events, Trudy Bonnette. We feel loved!
4/5/15- Easter Sunday. I am not one of those people who only go to church on Christmas and Easter. I love going to church because it uplifts me each week and fills me up with spiritual blessings. Unfortunately since I have had Leuk as an unwanted guest, I have only been to church twice. I am either neutropenic or in the hospital. How I long to go today. Today we celebrate the death and resurrection of our Lord. Jesus died for you and he died for me. How wonderful is that! The bible verse "By his stripes, we are healed" comes to mind. I want the healing touch of Jesus.
Over the years I confess family holiday celebrations overwhelmed me. There are a LOT of us in one house and there's not a lot of room. I usually got stuck with kitchen duty and would spend the majority of my time cleaning up after everyone. It has always been the same group of us cleaning. I failed to just enjoy myself and be thankful to be around family. This year I am so grateful to be home and with my huge, crazy famIly. Being together is what is important. I lost sight of that. It's funny how things change when you realize it may be the last holiday together. I am determined to make the most of my time home. I will enjoy every moment even if it is spent cleaning or washing dishes! After the transplant I won't have the energy to clean for awhile and will have to depend on others.
My knees, hips, and leg muscles continue to hurt. I really struggle to get up after sitting awhile. Stairs are also hard to climb. I sure hope this is temporary. My mouth sores continue to be painful. I told Patrick that is just a preview for what's going to happen after transplant when graft versus host disease kicks in.
Easter Sunday at Granny's was marvelous! I got to enjoy so many family members and friends. Watching Ollie hunt Easter eggs was priceless. I am thankful for my family.
I was thrilled to be back at work today; it was almost like I hadn't even been gone. I did have to spend the morning on the phone with IT workimg out issues- expired passwords, etc. Once I got going I was thrilled to be back in the game. Well almost back in the game. I can only do office work since I'm neutropenic. But at least I'm there helping out. Things were good until Dr.Hogan called.
Dr. Hogan wants me to return to the Mayo Clinic next week for bone marrow biopsy number seven. He said I need to be doing chemo soon since there is a delay in the transplant. He is concerned because my counts have still not recovered. I was disappointed to see my ANC dropped back to 700 and my hemoglobin dropped to 8.0. WBC went back up to 1700 and platelets are holding at 55k. This is a scary time. I don't know whether to do the biopsy up here, go to Idaho and have Megan do it, or fly to the Mayo Clinic. The CNA here told me it takes two weeks to get results. It never took more than five days in Idaho. I don't really feel comfortable being admitted up here for chemo since they don't usually treat AML in Alaska. I want to go back to Idaho to the physicians I trust. But if I am going to be having a transplant at Mayo maybe I should start the process so I can begin to trust them. I feel so overwhelmed.
I am grateful for all the prayers and encouragement I have received. Now that I have had a chance to process the news I feel better. Sure I'm still worried "it" is back, but I am calmer now. I just need to know what the right thing to do is. Lord, you are in control, not me. You know the outcome of this whole situation. Talk to me and tell me what is best for me. Make me know without even a shadow of doubt that I am making the right decision for the best possible outcome. Please guide the doctors so they know what is the best for me. Help me not be a number to them, but a person with a bright and healthy future ahead .
4/7/15- My moods are going up and down. I thought I had processed all of this stuff and now I feel so irritable. The doctor didn't call me today, but I decided to be assertive and call him before the end of his day. I'm surprised they put me through to him. I sent him a long message yesterday and they never even gave him the message. I informed him about the two week turnaround time for bone marrow biopsy results in AK. He of course said, "that won't work". I told him I would be down next Wednesday. Why go anywhere else when they are the ones who are going to be doing the transplant? I still got no answers about what he wants to do with me before transplant. The biggest thing is to see if there are blast cells in my marrow. If there are, that's going to suck big time. It seems like this is never going to end. I don't understand it- I feel good! I don't feel like I'm sick.
After I spoke with Dr. Hogan I attempted to call Carrie, my nurse manager. I was not able to speak with her, but the lady who answered the phone said she couldn't schedule the appointment until the doctor ordered the biopsy. I needed to buy plane tickets, secure a hotel, and rental car so I went ahead and booked the tickets hoping they put me on the schedule for Wednesday as I requested.
Sometimes I feel like everything is so out of control. I can't plan anything. I don't know where I will be in two weeks, let alone six months from now. Will this ever be over? Will I be able to resume my normal life? I am lying in my bed trying to soak the memories in. Next week I will again be so far away from my beloved Alaska. I dread leaving my family again. I'm already homesick and I haven't even left. I need to get my head on straight. Right now I am here. I am safe. I am loved. God is with me no matter where I am. I will never be alone. I am okay. Leuk has no power over me. Please God, remind me every moment that you are with me. I am scared.
4/8/15- Today was a good day. I got lots done at work and thoroughly enjoyed visiting with my co-workers. My heart and mind feel peaceful today. I bought my airline ticket and hotel. Bone marrow biopsy is scheduled for 0800 Wednesday morning. I will have the results by next Friday. As I have said before, it is what it is. I will deal with it by the grace of God and the support of my family, friends, and community. My mom is going with me.
Today my counts dropped even more. It's just unbelievable. Each time I go I hope for an increase, yet I am disappointed. The good news is the send-out test shows no blasts in the peripheral blood. That's a good thing! It seems like something would show if Leuk is back. Another good thing is I gained two pounds since Monday.
4/9/15- I can't believe how busy I have been since I have been home. I can barely keep up with my schedule. I'm working a full day and juggling doctor appointments and other obligations on top of it all. I am extremely fatigued. Usually the anemia doesn't bother me so much since I've been dealing with it for so long, but today I really feel it. I went to visit Granny after work and promptly fell asleep. I got a nice 30 minute nap in and then it was time to go to the church to shoot a video clip for the upcoming bone marrow drive at Church on the Rock. I'm grateful that we have had three wonderful meals delivered this week by awesome ladies in the church. What a nice thing to do!
Tonight Meghan, Kirk, and Olivienne came over to visit. I sure enjoy chatting with them and watching Ollie just be simply adorable. She was on a role tonight. She wanted her grandpa to tiptoe down the dark downstairs hallway to go to the cave. She has quite the imagination! Meghan and I looked at old photo albums and reminisced. I'm so glad she has such a vivid memory of things she did with Logan.
4/10/15- Today was my last day at work for awhile. I am so thankful that I was able to work a full week while I was home. It meant so much to me to be able to give back to my department, to help my co-workers out with work since they have had to cover my share all these months. I appreciate them so much.
A friend, who is also a co-worker, wrote me the most touching thing today. Part of it says, "I really don't think you understand the profound effect you have had on so many people. Your courage, strength, and continued loyalty to all of is very impressive and for me has impacted my life. Knowing how caring and giving a person you are, then to see you going through your current trial and tribulation and you continue being a hard charger focusing on the mission. Still giving, still caring, still Kelly!" Then he handed me something that touched me to the depth of my core- his Medal for Valor. This gift is from a true American hero and he feels I am worthy to carry it on my journey. I am overwhelmed and honored to take care of it. I look forward to the day I can hand it back because I am well. In the meantime it will encourage me and give me hope that I may be as brave as he was when he earned this respectable medal.
Another blessing today was seeing my counts went up. They went back to where they were before the last decrease. My ANC is back to 700. Praying for a full recovery before Tuesday's airplane ride.
God is so good. I see God's love in everyone I meet. So many people are praying for me and I am so thankful. Today I had to call IT to help me with my computer. I spoke with the technician who told me he shared my story with several people who also shared it so more prayers would be heard. Who am I to deserve all this love and compassion?
4/11/15- Its been a whirlwind day. I went to visit Meghan this morning and brought Olivienne home with me. She entertained me all morning. I had a friend come over to visit. We had plans to go to Northgate's healing prayer group. I wanted to walk there because it's just a two and three-quarter round trip walk. I started off at my usual brisk pace. My friend said, "Kelly, I don't think I can keep up with you. You are in much better shape than me." It struck me as a hilarious thing to say. I looked at her and replied, "I have cancer! I am not in that great of shape. You can keep up."
The prayer group was wonderful. My dear friend, Lynda, had invited me. Lynda is a beautiful woman who has always been on fire for God. She was a great support to us when Logan was sick. I will never forget her compassion. It was extra special because it hadn't been that long since her husband, Jerry had died from cancer. I was always amazed that she had the strength to reach out to us. She has continted to support our family. I appreciated the specific prayers I received today. I was amazed at how many people came up to me to tell me they are praying regularly for me. Isn't God great? He is in so many people I know, and have recently met, on this journey to destroy Leuk. He has sent his workers to encourage me.
Today Meghan and I met with Mike and Carol to talk about the prime rib benefit dinner they are organizing to raise money for our medical expenses. This is truly a humbling experience for us. Our friends, family, and community are standing beside us all the way. There are no words to express our gratitude and appreciation.
4/12/15- I have so much stuff it won't fit in my suitcases. A great deal of it is medical supplies. I am packing to prepare for a trip that may last four months. This is a long journey. Today I have fought the tears. I keep staring at things, trying to imprint them in my memory. How can it be time to leave already? I try to be brave.
We hald lunch with our friends John and Annette and then had a family dinner at Mom and Dad's. Thank goodness we had Ollie to lighten the mood. I know everyone is worried about me and sad I am leaving. Thank goodness I have such a loving and supportive family. Ringo won't stop following me. He knows I'm leaving and he is worried. I think he knows he can't come with me this time. I don't know if it will be harder on him or me.
4/13/15- Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there', and it will move. Nothing will be impossible for you. Matthew 17:20.
Leuk, get away from me! You have no power over me. My God is bigger than you.
Today is my last day home for an uncertain amount of time. My morning will be spent cuddling our baby girl. I must make the most of every single second I have with her. I dread saying goodbye to her and the rest of my family. My son, my daughter, their spouses, my parents, grandma, brother and his family, aunts, uncles, cousins, friends, and husband. But I am carrying everyone of you in my heart.
I spent my day with Ollie and visiting friends and family. My night ended with a great walk with all the kids and the dogs. I feel loved.
Mayo Clinic number three
4/14/15-Mom and I are at the hotel in Rochester. We had a safe trip with no issues. I experienced great service by a flight attendant named Donna. She was very concerned about me and showed a lot of kindness. She said she would pray for me too! Isn't it amazing how God orchestrates meetings between people?
Tomorrow morming I will have labs, followed by a bone marrow biopsy. I have such peace about my upcoming mission. I feel free of fear. I know I am going to beat Leuk. Yesterday's counts showed an increase to 2,000 WBC! I'm excited to see tomorrow's.
I am trying not to dwell on the fact that earlier today I was in my house with my family close by. How I will miss them! I am so glad I got to go home and spend such great quality time with so many.
4/15/15- Last night I dreamed my counts were normal. How I wish that dream to come true. We are leaving in a bit to go to the clinic. First up is the blood draw, then bone marrow biopsy number seven. I gave in and agreed to have this one under sedation. Sedation wasn't offered in Idaho so I got used to doing them awake. But if it's offered I will stop the foolishness of thinking its weak to be sedated. I don't have to prove I am tough. I know I am. I'm going for comfort this time.
Bone marrow biopsy went great. I like that sedation thing! My counts went up! At first they listed the tests and everything was down. Imagine my surprise when I went onto the patient portal later and found different numbers which were increased! I am so thrilled. No blasts were found in my blood which is a good thing. Results of biopsy will be back Friday.
Today was a long day. Mom and I walked over three miles just going from building to building. I'm pretty tired now, but fighting sleep. I'm afraid if I nap this late in the day I won't be able to go to sleep tonight. Tomorrow we have a day off. We haven't talked about what we will do. I just know everything is going to be okay.
4/16/15- @ 0200- I had to see a psychologist today for routine pre-transplant visit. I told her I no longer had trouble sleeping. I did not lie. But I can't sleep tonight! I fell asleep early and woke up about midnight. I miss my bed, husband, and dogs. I got used to being home and in a normal routine.
Mom and I took a great road trip to Lake City, MN. What a gorgeous day it was. It was in the mid 70's. We found a Friends of the Library book sale and loaded up on used books to keep us occupied while we are here. We sat down by the marina and read. We also took a nice walk around the marina. It sure was good to have a day off from the clinic. I feel great and am confident that I will hear the words, "you are in remission" tomorrow.
4-17/15- It's strange to think how much my doctor controls my life. He will know the secrets of my body before I do. He will know if the last chemo in February worked to put me in remission. He will make the decision of what to do depending on whether or not Leuk is dormant. I have to stifle my strong personality and allow him to take charge. He's the expert of fixing people. I have intimate knowledge of two people with leukemia- Logan and I. I have witnessed the experiences of dozens of others, but only walked the path twice. Hopefully he has treated hundreds, if not thousands, of people in my situation and can use those experiences to make the appropriate decisions for me so I may live without Leukemia. I have to trust him. Thankfully there is a greater physician than him and I trust him completely. God already knows the secrets inside of me.
Mom and I are walking to the clinic today. It is about 2 miles each way. I was disappointed we only walked three miles yesterday as I was sure we had gotten four in. Mom humors me in my need to exercise.
Our walk was great. We soaked up the sunshine. I had to take my hat off to cool my head down. I have the softest hair. There isn't much, but what I have is soft. Although it wasn't needed, I used conditioner today. It made me feel like I was doing my normal routine.
We have been at the clinic for over four hours. I had labs earlier, then met with Carrie, my nurse manager, and now am waiting for Dr. Hogan. Carrie told me the results of the bone marrow biopsy aren't back yet. She expects Dr. Hogan can call and get the results. I am a nervous wreck, but am trying to look like everything is okay. How I long to hear the words, "you are in remission." My counts dropped again today. What a roller coaster I can't seem to get off of.
I didn't hear the words today, but I did hear the preliminary results show no sign of leukemia. Dr.Hogan seems confident I am free from leukemia. He is allowing me to go home Sunday and remain in Alaska until the first week of May. Obviously if my counts keep going down, or I get sick, I will have to return sooner. But at this point I will be home for another two weeks. How cool is that? God is so good! Thank you, thank you Jesus!
4/18/15- It's supposed to be another beautiful day here. We are going to drive to a small town called New Ulm. We will meet my former Alaskan friends, Lisa and Jerry. I am excited to see them again. They used to live just up the street from us and our kids were great friends. They knew Logan too which makes it super cool. I love talking with people who remember Logan. The memories they share are priceless to me.
We had a wonderful time today with the Wanberg's. We had a nice lunch together and then we all walked around the charming town. We stopped in a Catholic Church and admired the beauty. We went to a natonal park and Lisa and I walked another four miles which gave me six for the day!
Mom and I stopped for dinner on the way back. We were surprised when the waitress told us our meal had been paid by a stranger. Mom and I were just about in tears. Even the waitress was about to cry. We were so touched. People are good all over.
4/19/15- Tonight I will sleep in my own bed. Besides Patrick, I am sure there will be two other males in my bed. My dogs have missed me! Yes, they can sleep with us. I am willing to curl up like a pretzel so they may have room. We are taking a non-stop flight which is so much easier on me. I am sure I will sleep most of the flight. I am overwhelmed with gratitude that God put things in place so I may return home again. It is the ultimate blessing. I can be normal for two more weeks. Sensational!
We are at the airport and I can hardly contain my giddiness. I am homeward bound! When I left last week I said all my goodbyes. Now I have another opportunity to be with those I loved. I am amazed at how much God is blessing me. Wow! So amazing!
I try so hard to keep my independence and ability to do things without relying on others. Although it is nice to be cared for, it's frustrating when people think I can't do things- or shouldn't do things. It's frustrating to be treated like an invalid. I don't mind accepting help when I need it, but when I don't, I wish people would understand I really am okay. Soon I won't be able to do a whole lot. Until then I want to be normal. I NEED to be normal. It's also frustrating when I am told to rest and take naps. I am not doing ANYthing against medical advice. My doctor emphasizes how important exercise is. Please let me be normal. I will ask for help when I need it. I promise.
I am HOME! Oh, what a treat to be home. I love Alaska. I love my kids and animals. I am so thankful to lead a normal life for the next two weeks. Thank you, Lord!
4/20/15- I am officially in remission!! Got the call from Carrie today. Not only that, but my ANC is up to 2000. I will be re-checked on Thursday. I hope it stays up. I will still be wearing a mask in public to protect myself. I feel like a freak, but it's worth it to stay healthy.
Olivienne is sick with a bad cough so I can't see her for a few days. I can't express how hard that is on me. Today Mom and I visited with Granny. Tomorrow I go back to work. Life is good.
4/21/15- My alarm woke me up at 0500. It was time to get ready for work. Anticipation of the day ahead got my heart pumping fast. I am going to work! I am going to be productive for a change. No waiting around between labs, doctor visits, testing, or pharmacy. I am actually going to give something rather than take. I like to be productive and feel like I am a contributing member of society.
I was puttering around in my kitchen this morning making our lunches and feeding the dogs. For a brief moment I allowed myself to feel the normalcy of it all. Then I looked at the dogs and imagined how they are going to feel when I leave them again and my heart sank. Is it ever going to be real again? Am I really going to be all better and return to the life I had before? I happened to like my life. I know there is no way of knowing if the treatment ahead will debilitate me or set me free. I am trying to ignore these thoughts and regain my happiness and confidence.
It's funny, but on the way to work I was listening to a Christian station and the DJ said, "Sometimes you may think you can't go on because you have been sick so long. But if your heart is still beating you continue on fighting and trusting Jesus." That resonated well with me today. The verse in one of my favorite songs goes like this, "When the darkness closes in, still I will say Blessed be the Name of the Lord." Yep, it's time to buck up and soldier on. God is good and work is going well. I love being back.
4/22/15- I am tired. How did I ever keep up with my schedule? I guess it helped that at my busiest times I wasn't extremely anemic and recovering from chemo. However, it has been 2.5 months since I had chemo. I shouldn't be feeling this tired. Even though I am told its normal, I refuse to use it as an excuse. I worked all day, went and visited with Meghan and Olivienne, and took a walk with them. When I got home I took a walk with Casey. It's 7:20 pm and I am ready for bed.
I came home to a prepared dinner someone from church made for us. Amazing. If it wasn't for the meal Becky made, I think we would have had cereal for dinner....
Today as I looked at the schedule for my pre-transplant appointments, my heart sank as the reality hit again. In 12 days I leave and in 17 days I will be admitted to the hospital for chemo. On May 12-14 I begin full body radiation twice a day. I am going to be in the hospital on Mother's Day. In 1998, Logan was also in the hospital for chemo on Mother's Day. He made me a gift in the hospital activity room. I remember being grateful that I was with him that day. I also remember being sad that I wasn't with Casey and Meghan. I won't be with them, my mom, or grandma this Mother's Day. But with the sadness comes relief. Relief that the next step is approaching because the sooner we start, the sooner we will be done. Leuk will fry- sizzle to his death.
My heart is full of gratitude for all the encouragement and thoughtfulness we have been shown by so many. DOC rocks! Our church rocks! Our friends and family rocks! Everywhere we turn there is someone else wanting to bless us in some way. I can't wait to give back when this is all over. The love of Christ shows in a multitude of people. It's so hard for us to receive as we would prefer to give. It's humbling to accept the help. We are truly grateful and appreciative. Thank you.
While driving home this afternoon I was thanking God for all the blessings he has given to us. I did so well during all three rounds of chemo. With the exception of my line infection and blood clot, I never had to return to the hospital for being sick. I tolerated the chemo and was able to continue my exercise regime. We were blessed with a place to live in Idaho and had a fantastic medical team taking care of me. My family and friends were able to visit often. My dog was with me! We received financial gifts and I got loads of other gifts including an endless supply of hats. We have been prayed for and loved on. There have been several bone marrow drives held in my honor (and Logan's memory) so others can be helped with a match. We have been surrounded by our community family, and friends. We feel loved. So I am sick. A lot of people are. I am not going to sit around feeling sorry for myself. God is healing me and I will forever give him the glory for all the good. He is there for me during the bad times too. He is faithful and I will honor him by being grateful and appreciative of what I have. I am okay. He loves me.
4/23/15- Ready to go to work! I am so glad I can be there to help out my co-workers who have been covering for me the past several months. I like to think of myself giving back, rather than taking. I continue to marvel at how good God is. I did not expect to be able to stay home this long. I am so happy.
Yesterday I got to see Olivienne for the first time since I have been back home. She has had a cough and a runny nose so I couldn't be around her. That was so hard! But yesterday was great. I got to push her in her swing, comfort her when she was afraid of a spider, and hold and snuggle her. I didn't like having a mask as a barrier between us, but I have to be safe. I'm just grateful I got to spend time with her. Tomorrow we are having a family dinner so I will get to visit with my incredible family again.
https://www.facebook.com/COTRWasilla/videos/751682798264367/ This is link to a video about upcoming bone marrow drive on May 3rd at church. There's also a drive this Saturday from 10-4 at Palmer Downtown Plaza.
I was really hoping to get rid of my Bane mask for awhile. Unfortunately my white blood count and ANC dropped again. So....I shall continue to be the masked PO. I try to avoid being seen in the halls. I'm pretty self-conscious about it. I also dread stores... But I will do anything to protect my health.
Another week at home
4/24/15- I have another 9 days at home. You know how it sounds like a long time when you go on vacation, but then it goes by really fast? I am afraid that is happening right now. I am enjoying every moment. I received the gift of an extra amount of time home. It was unexpected and delightful all at the same time. I love it. Until May 4th, I will be here and feeling good. I don't like to think about what lies ahead.
After visiting with people at the bone marrow drive tomorrow, Patrick, Ollie, and I are going to the cabin. Yes, we get to take her! It's her first night away from momma. Momma will probably have a harder time than Ollie will. What a treat we have in store for us this weekend! I am so excited!
Its great being at work each day, but I feel a twinge of regret when I see my fellow officers put on their vests and holster their guns. I miss that. I miss getting out to do field visits. I really felt a longing when I saw them gather all the supplies to go to the range yesterday. I wanted to go so badly. But.. I will continue to sit behind a desk and process paperwork and thank God and DOC that I am able to do that much. This is just a season.
We had a big family dinner tonight. Mom made three kinds of soup and brought over. She even brought a delightful sugar-free dessert! What a wonderful time I had gazing around the room memorizing expressions and just enjoying the company of my family. The love I have for each of them is overwhelming. The love we have for each other just pours out of each of us. We have always been a close-knit family, but especially now we recognize the need to be together. I regret the times we were too busy to make time for one another.
I got on the patient portal tonight and found a message from Carrie. They moved my transplant up one day. I will be getting my Hickman in the 7th and chemo will begin the 8th. Day zero will be on the 14th. One day closer to coming home.
4-25-15- What a gorgeous and sunny day outside! It's perfect for the big "Who Let the Girls Out" event in Palmer today. Hopefully that means lots of traffic for the bone marrow drive. I have such awesome friends. I can't wait to see everyone this morning. I am hoping the friends I haven't seen yet will come down to visit.
I am very excited about going to the cabin tonight too. Even though it's a long drive for one night, it will be so worth it. Ollie! Oh we are going to spoil her! And my dogs are going to love running around with us. Life is precious and valuable. I do not take a moment for granted.
4/26/15- We had hoped for more, but still, 25 more people are registered on the national marrow registry. It may be one person from yesterday's registration who gets to save a life. I am so proud of my friends and family for their hard work. I was so impressed with the awesome volunteers. There are three more Alaska drives coming up. Lives will be saved because someone cared enough to take the time to register.
We had a great time at the cabin with Ollie. Her first overnight away from momma and we had the pleasure of being the ones to have her. How awesome that is! She was a doll and we spent so much time just admiring her. I strapped all 27 pounds of her on my back and took her and the dogs for a walk yesterday and today. It felt good to push my limits. My heart and lungs need strengthened before the next round of chemo. Today when we left the cabin I had a moment of weakness and felt the sadness wash over me. We had been talking about bringing toys down for her and I realized everyone but me will get to enjoy her there this summer. I will miss out on so much.
Tomorrow I will be back at work. I have eight days left at home. I will enjoy every moment.
4/27/15- I read my latest bone marrow pathology report this morning. It was really awesome to see in writing that there were no blasts. Every report I have read talks about a left-shift in my cells. It kind of amuses me because when I shoot, I tend to shoot to the left. I always have to correct that. Unfortunately I don't know how to correct my cells....
It is a good thing I am back at work while home. I am out of leave. We have been beyond blessed all these months with leave donations. Going to one income with more than twice the expenses isn't easy. But thankfully we have been so blessed with help from many Friends, family, and strangers! God is good and he will provide.
How can I be so tired? It's ridiculous that I feel like I have been run over by a truck. I worked a full shift, picked Olivienne up, took her with me to get my blood drawn, took a walk with her and Casey, and played with her for a couple of hours. That's not that much, yet I feel like I participated in an Olympic event. It's not even 8 and I'm ready for bed.
My counts went back up. My ANC is 1000! I was pleased to see that. I have a message into to Mayo to see if that's high enough to have my lovely sister-in-law clean my teeth tomorrow. (She's also my hygienist) After Ollie and I left the doctor's office we got into the elevator. She pushed the telephone button. Whoops! Did you know if the button is pushed you actually get to talk to an operator? It was a little bit embarrassing as there were other people in the elevator. I told them I was running and leaving the baby with them... I wouldn't really do that!
Today I was given three tickets for a raffle by someone I had never met before. It was the sweetest thing. I wanted to buy one to benefit breast cancer, yet she handed me an envelope with three tickets and refused to let me pay for them. I can't stop being amazed at this community. I am so loved and it feels so good! I didn't earn this love, but I am thankful for it and the support. It's like my relationship with God. I sure as heck am not worthy to be called a child of God, yet I am! He sent his son, Jesus, to die for me! For Kelly Marre! An unknown person who doesn't deserve the freedom he has provided, yet he gave it so freely to me. And not only that, but he sent people to support me in this "Kill Leuk" journey. All I can say is, "Thank you, God and thank you everyone who supports me." I pray I have an opportunity to bless you one day.
4/29/15- Yesterday I had written quite a bit and this site wouldn't let me save it. It's funny how the little things can irritate me when the big picture is so much more important. It's one of those things where I remind myself how much I value and appreciate every single day. I go through my days being so thankful just to be alive, to feel well, to be surrounded by my loved ones and friends. Who cares about the little things! Yesterday I got the pleasure of babysitting Ollie again. We built a fort underneath the dining room table and I sang her songs. She keeps saying, "more, more". I don't take that for granted. It will be a whole month in between visits this time. I don't even like to think about that because the tears start welling up. That little girl is beyond precious to me. I took her to visit Granny yesterday. Granny is another person whom I want to spend every moment I can with. My granny is amazing and I love her so much. I love everyone! I feel like singing the Barney song right now. I love you, you love me, we are a happy family.......
Yesterday a friend asked me if I ever yell and cuss at God because I have leukemia. I can honestly say no, I haven't. I'm not mad at God at all. I don't like having this disease, but it's not God's fault. He has held me in his hands this whole journey. I know he will continue to hold me close. I may not understand why I am sick, but as I told her, why not me? Why do I deserve to be disease free and someone else isn't? God is using me and this journey to help others. I have to know my experience is making a difference in someone else's life. There is a purpose to it. So no, I'm not mad at God. I love him and I thank him. Good is coming out of this.
I took some time out of my work day to go visit the ladies during their "Connect" meeting at church. I was invited to come, but no one prepared me for what was coming. I walked in with "Bane" on of course. I sat down and Susie said, "Oh our special guest has arrived." I looked left and I looked right and all eyes were on the masked lady. Oh no! I was thinking, " please don't ask me to speak." Then I heard the words, " can you come say a few things, Kelly?" I do not like crowds or being the center of attention. But God soothed my restless spirit and I was able to share with the ladies how much I appreciated their support. These are ladies who have sent cards, sent prayers to Heaven on our behalf, sent gifts, money, and love. Yes, I was comfortable to stand in front of these dear ladies who so freely give of themselves. I was thrilled to be standing in my church singing songs to God once again. At the end, several gathered around Mom and me and prayed powerful powers for healing. It was prettly cool to have my daughter-in-law be one of the ones to pray for me.
My afternoon ended with a great hike with a friend who also is being treated for cancer. I had Ollie on my back and we walked and walked. I put in 4.78 miles today! I'm so thankful I feel so good.
4/30/15- The last day of the month. The last month I have my very own bone marrow in me. But since my marrow turned against me, I guess this isn't a bad thing. In just two weeks from today I will be filled with French marrow. If the blood type is different than mine, mine will change. I may not be A positive anymore. Sure hope I'm not "negative". I like being positive. Just my silly little joke.
Today my co-workers had a "Good Luck Au Revoir" party for me. I got a new mask to wear, but it's one to cover my eyes, not my mouth and nose. I think it will look splendid with my WW outfit in the hospital. Mayo Clinic will be perplexed at what to do with me, just like Kootenai Hospital was. For lunch we had pizza and French eclairs. I was given a beautiful notebook with a picture of the Eiffel Tower on each page. How fun is that! I'm going to miss everyone here so much. I'm so fortunate to have a job I love so much. I will be picking Ollie up this afternoon and taking her with me to get labs. I will keep her away from the telephone button in the elevator this time.
5/1/15- My counts did not improve yesterday. Bane stays on. Or should I say he should stay on. While at work I got a little lazy and took him off. I was allowed to do office visits today and being seen at the window with no hair and a hat is bad enough. The mask just further solidifies my condition- makes it too real. I feel so transpararent. I have cancer. Everyone knows. I have chosen to share my journey with the world, yet it's not easy for me to do. Normally I am more of a private person. Today I am emotional. One more day of work and I am back to the land of medical procedures. This is my last night with Patrick for awhile. He leaves late Saturday night/early Sunday morning for Spokane. He'll pick the car up and drive to Rochester. Since I have been home I have been exhausted. We haven't spent enough quality time together. I am very emotional thinking about all the time I want to spend with my family and realizing the time has gotten away from me. I realize if I hadn't chosen to go to work I could have spent more time with family. But thankfully they understand the need I have to help out my co-workers. Plus as stated before, I love my job and people I work with. I am on the brink of tears.
5/2/15- Yesterday was Kelsey's pinning ceremony for nursing school, it was awesome to see her get this recognition. Four years of college completed! I'm a proud mother-in-law. It was a lovely ceremony. Afterwards we went to Settlers Bay to celebrate. I really don't think I appreciated having family around as much as I do now. All those years when I was "too busy" to get together. I have such regret. I love my family and all the in-laws of my kids. I love my friends. Why didn't I take time to stop and enjoy life more?
Patrick leaves tonight. The next time I see him I will be ready to be admitted into the hospital for chemo. That stinks. We had a good day though. This afternoon we hung out with Meghan and Olivienne. Papa made her a redneck pool. We don't have bath toys so she played with the plastic container that the dog treats came in. Rednecks... We need bath toys for our baby's baby.
Tomorrow I am excited to go to church. There will be a huge bone marrow drive there too! Plus Carol Fritz will be there to hand out potatoes that will need to be baked for next Saturday's fundraising dinner. What wonderful friends I have.
5/3/15- Church day! Yay! Last time for about four months. It will be so good to see many of the people who have been faithfully praying for me. And I hope hundreds get registered on the bone marrow drive today!
Last night I had to say goodbye to Patrick. I probably will see him Thursday night. Hopefully his trip will go smoothly. It's a 1400 mile trip. Poor guy won't want to drive for awhile. Good thing the place we are renting is close enough to walk to the clinic.
I am mostly packed. I will get off about noon tomorrow and will spend afternoon visiting with family. It's going to be so hard to say goodbye. I hope I don't cry.
119 got registered on the National Registry today. That's a good number. With all three Valley drives together, and the ones who registered on-line, there are now an extra 400 or so potential life-saving people in Alaska! Not to mention all the ones out of state and my friends in Germany!
Today I got to visit with many people and also went on a walk with Meghan and Ollie. Actually we hiked with the dogs and her sister-in-law and nephew. Fun! Before that we took Olivienne to ride the pony at the Pentecostal Church in Palmer. She had so much fun! I appreciated a young man who came up to me and asked if I was Meghan's mom. He then told me he has been praying for me. How blessed am I! Today a dear friend gave me a prayer Shawl that came directly from Israel. She brought it over herself. Not only that, but she put my name on a piece of paper, on two occasions, at the wall in Jerusalem! Israel is a favored nation of God's. It is indeed Holy Land. God just keeps making cool things happen.
People want to know if I'm nervous about what is ahead. No, I really am not. God has given me such peace about this bone marrow transplant. I have no fear. I believe I will be okay. God is with me, how can I not be? In five days chemo starts. Honestly, I rocked chemo the last three times. I'm going to kick butt again. I will take it like a champ because you are praying for me. It's not like I am anything special, or have superpowers (WW), but GOD gives me strength and the power to get through it. It won't be easy, but with his help I will be okay. Thank you, Jesus. I trust you and I accept the trial of what is to come. With your help, I will get through this and share your love and grace with the world. Thank you for never leaving me. Thank you for being the ultimate guide. Thank you for helping me share your love with others. May you be glorified in this journey to kill Leuk.
5/5/15- I am at our rental place in Rochester. The trip down was fine. I hurt really bad while sitting on airplane so it was hard to sleep. I'm about ready to crash for a few hours. I had a whirlwind trip home. The last couple days was non-stop visiting with friends and family. My brother asked me if I thought it would have been better if I had just stayed in Rochester rather than coming home for two weeks. I didn't have to think twice before I answered that. Going home put me in the right mindset to prepare for what lies ahead.
I had a five hour nap. I woke up a couple times and thought, "I better not move too much or Ringo will want me to get up." Then I remembered that Ringo isn't with me. I'm not home anymore. Right now I am here alone. But that's okay because I need some time to myself right now. I need to process what is going on and just be alone. As I wrote that I got a tinge of regret. One day will be nice, but I bet by tomorrow I will be wishing I wasn't alone. Patrick may end up getting here tomorrow night. It's a long drive and one person can only drive so far each day.
Yesterday I tried to be brave as I said goodbye. I'm glad I got to work so early. There was no one to hear me as I sobbed at my desk as I realized it will be months before I am home again. I took care of Ollie all afternoon. She was especially loving and clingy just before they left. She laid her head on my shoulder and clung tightly to me. My heart melted. That baby brings me such joy and hope. Ollie is going to be a big sister. I have lots to look forward to so I need to get this behind me and move on.
My thoughts about needing to be alone lasted a few hours. I am lonely and bored. I waited too long to go eat and discovered it was pouring when I really wanted to go. Thank goodness for rain coats and umbrellas! I had a very delicious dinner at the Canadian Honker. I ate all my dinner and was still hungry. After I had been back home for an hour or two I realized my blood sugar was low so off to the gas station I went for snacks. I was embarrassed to buy a bunch of junk food, but that's all there was. I ate stuff I normally wouldn't it. Then I thought, "well I can afford to gain some weight so what the heck!"
5/6/15- 0845 and I'm waiting for my second appointment of the day. The first one was ridiculous. It lasted five minutes and the purpose of it was to hand me a piece of paper that showed what the transplant would cost if I didn't have insurance. $400,000. Thankfully I DO have insurance and it's covered. Thank you, God, State of Alaska, DOC, and my DOC friends who have given me leave to keep me insured. It seems they don't offer discounted rates to the uninsured. This is America, politicians! The land of the free, yet nothing is for free. If you don't have insurance and get diagnosed with cancer, it's not going to be a good outcome for you. Something needs to change. Even those with insurance may not be approved. I was subjected to intense medical diagnostic testing. If I wasn't in overall excellent health, I would have been denied for coverage for transplant. I'm thankful I take good care of myself.
Patrick is 100 miles from Rochester. I shall see him by noon! I'm glad; I didn't like being alone last night. I heard a noise and it sounded like something was dropped downstairs in the kitchen. I was missing my gun and dogs. But it's the last night I will be alone for months.
Patrick arrived in time for my afternoon appointments. Things went well. We are on schedule. The cord blood units passed all the testing. I am getting my new Hickman tomorrow morning. Friday morning I will be admitted to the hospital. I will have three days of chemo and three days of radiation. I have never had the chemo they are giving me. I packed my hospital bag tonight.
Tonight I told Patrick I wished I had never gotten sick. He said, "yeah, we could just pretend we are on this really cool trip. " Then he said, "But wait! We are in Minnesota! That's not a cool trip." We laughed hysterically at the dinner table. Oh the things that amuse us!
We are thinking about going to Lacrosse, WI tomorrow after my procedure. We have heard it's a really neat place. We need to do something awesome on my last day of freedom. My counts went up today so I feel more comfortable doing things.
5/7/15- Today is the day my body once again has a foreign object in it. The lines aren't that big of a deal except for showering. I really hate having to ask for help to cover it up so it doesn't get wet. It's an irritation and a loss of independence yet again.
Yesterday we had a disturbing, yet necessary, conversation with my doctor. He wanted to know if I wanted "full code" if there was a chance I could survive. He explained, if I agreed, they would just make me comfortable and let me die if I had something like a brain bleed and wasn't going to be "me" ever again. That's what I agreed to. Save me if you can guarantee I will be okay. Let me go if I won't be me again. I have no desire to be a burden on my family. Living in a vegetative state is not an option for me. I would rather be free in Heaven.
5/8/15- The procedure itself went fine yesterday. Although I was told I would be given medicine to put me asleep, I was not. I was awake like I was last time. That's not a problem, but the pre-meds they gave me caused me to be very, very sick all day yesterday and still today. I can't eat or even drink water. I am very nauseated. I am now in the hospital and am waiting for them to give me something to help. There's a national shortage of IV compazine. Thankfully the nurse said they just got a little in so they will infuse in my Hickman hopefully soon.
5/9/15- I slept most of the day yesterday. Made the time go faster anyway. I feel okay this morning. Last night I was very restless- just being in the hospital causes me to have anxiety. I didn't walk yesterday which probably contributed to the relestness feelings, but I was too nauseated. So far I feel pretty good. I should get a walk in before chemo starts.
Well there isn't much of an area to walk in. How many times can a person pace the same halls without going crazy? We did three flights of stairs so at least that's something.
I broke out in a rash all over my chest and neck. It's an allergic reaction to the dressing I have for my Hickman. I had same issue on my arms when I had the PICC lines. It's very itchy! None of this process is fun. I just had a catheter put in and it has to stay in until Monday. One of the chemo drugs is so toxic to my bladder they have to flush it continuously while I'm getting it. So, there you go. A real day in the life of a leukemia patient.
I still feel great! Thank goodness for anti-nausea meds. Had a couple great telephone calls today that made my day. I sure wish I could be at the Prime Rib Benedit dinner tonight. What amazing friends and family I have! We plan to Face Time so I can thank people for their support. I have my two prayer shawls beside me in bed. God is so good!
I received many pictures, a video, and Face Timed all the supporters. What a great crowd! I heard my granny got into a bidding war with a PO friend of mine. Granny won. That woman is determined! We are so blessed and appreciative of all the ones who participated in this successful and fun event. Thank You!
Gary arrived tonight. It's so good to have him here. What a faithful friend we have.
5-10/15- Happy mother's Day to my wonderful mother, grandmother, mother-in-law, my daughter, and all my family and friends. This day is a day to celebrate you! I'm doing okay besides being stuck in the hospital and having chemo running through me. Long as it works I am happy.
it was a pretty sleepless night. I was too excited chatting with various people at the Benefit dinner and didn't even turn off the light unto 12:05. At 12:30 the nurse who monitors the catheter came to check on me. Then I laid awake until close the 0300. After that I slept pretty good till 7. Maybe a nap is in store today.
No real plan today, but will likely go for another walk. I didn't even walk two miles yesterday so that bummed me out.
Another great day. Patrick brought me a beautiful card and he gave me new Keen shoes. Meghan sent a gift down for me to put electronic pictures in. Casey held up his bargain of cleaning out my backyard pond like he does every year. Whenever I get homesick I can watch and imagine being home surrounded by my loves. Gary and I went for a walk today. My fit bit is dead so I'm not sure how much I walked. I'm not happy being in the dark! I take pleasure in knowing how much I can exercise each day. It keeps my mind in the game.
Tonight I am trying to figure out caregivers for me the next few months. I can't be alone. Everyone is so busy and I don't like imposing on people's lives.
5/11/15- My mother's birthday. I wish we were there to celebrate with her. Happy birthday, Mom, I love you!
Today I got my catheter out. I did it! 2 3/4 days and it's gone. It wasn't as bad as I thought it would be. I kept telling myself to suck it up remembering my friend Mari who had MS. She was bedridden for years and a a catheter for most of the time. What I went through was nothing compared to what she went through. No matter how badly we may think something Is, there is always someone who has it worse.
Today I start full body radiation. I'm a little nervous about that. I am day -3. So in three days I will have new umbilical cords in me. So far I am blessed with no mouth sores and I still have a voracious appetite. I haven't lost any hair yet and food still tastes good. The nurses are fabulous here and the round of doctors are very attentive. I believe I am in the right place.Today's Jesus calling devotion is great:
Thank me for your problems. As soon as your mind gets snagged on a difficulty, bring it to me with Thanksgiving. Then ask me to show you MY way to handle the situation. The very act of thanking me relieves your mind of its negative focus. As you turn your attention to me, the problem fades in significance and loses its power to trip you up. Together we can deal with the situation, either facing it head-on or putting it aside for latter consideration.
Most of the situations that entangle your mind are not today's concerns; you have borrowed them from tomorrow. In this case, I lift the problem out of today, and deposit it in the future, where it is veiled from your eyes. In its place I give you My peace which flows freely from my presence.
Isn't this just so cool? God guides every moment of everyday. My eye is on the beholder and I know he watches me.
Two radiations down- four to go. I don't feel anything during it, but I sure am tired. I'm also losing my appetite.
5/12/15- I am not feeling so well this morning. I am nauseated, starting to get mouth sores, and extremely tired. I'm not sleeping well at night due to the steroids keeping me up. Radiation starts in 40 minutes and I'm worried the ill effects will get worse. Four more doses than I'm done. I have no appetite. I wish I could just sleep the next couple days away.
"Come to me all you are weary and burdened and you will find rest for your souls" I come to you, Jesus and ask for your healing touch. I don't want to be sick. I want to feel good when my new stem cells flow into me on Thursday. Let them refresh and renew me through your power. I trust you even when I am having a difficult day.
i have four radiations completed and two to go. The nausea is getting worse and I can't eat. I'm concerned about losing more weight. I finally got up to a good weight before this round of chemo and radiation. I just vomited after taking my evening pills.
I need my soldiers standing beside me and God directing the way. Two more nights then I should be able to get into the rental place which is seven blocks from the hospital. Sure will be nice o be able to move from room to room.
5/13/15- 0340 and I have been waiting for more anti-nauseous meds for an hour. I slept a bit earlier and felt fine till I stood up. I despise feeling nauseous. I have a feeling I will be skipping more meals again today. Thank goodness today is the last day of radiation. Tomorrow is Day zero!
Jesus Calling- thank me in the midst of the crucible.When things seem all wrong, look for growth opportunities. Especially look for areas where you need to let go, leaving your cares in my able hands. Do you trust me to orchestrate your life events as I choose, or are you still trying to make things go according to your will? If you keep trying to carry out your intentions while I am leading you in another direction, you deify your desires. Be on the lookout for what I am doing in your life. Worship me by living close to me thanking me in all circumstances.
I believe I am following God's direction. This is sure not what I Wanted for my life. But I trust him and know he will never leave me.
Well it is done. Three days of chemo and six radiation doses complete. Just when I thought I couldn't do another round, I did with the help of my Lord and my friends. I have two prayer shawls on my bed and the Valor of Armor loaned to me, as well as Logan's Squeaky Lemur) nearby.
i still feel nauseous. I sleep most of the day away. Tomorrow around 10:30 will be the cord blood in fusion. They say the worst is yet to come. I will be brave. I'm going to be a grandma again. I have a lot to live for.
Transplant Day- day zero
We did it together! Day zero has arrived. I dreaded this day for many months because Plam A would already had me home and better. But when it became evident that Plan A wasn't working, we have been preparing for this. Fortunately I got to go home a few times while waiting for my French umbilical cord cells. Now I am emotionally refreshed and ready to protect these new baby cells. Of course I am concerned I will get an infection like Logan did after his. But I trust my God. His will be done. I am a very blessed woman. I have faith, husband, parents, grandma, aunts, uncles, cousins, friends, children, and grandchildren to live for. I will give it my all.
Today's Jesus Callimg could not be any more appropriate:
i am a mighty God. Nothing is too difficult for me. I have chosen to use weak ones like you to accomplish my purposes. Your weakness is designed to open you up to my power. Therefore, do not fear your limitations or measure the days demands against your strength. What I require of you is to stay connected to me, living on trusting dependence on my limitless resources. When you face unexpected demands, there is no need to panic. Remember that I am with you. Talk with me and listen to me as I talk you through each challenging situation. I am not a careless God. When I allow difficulties to come into your life, I equip you fully to handle them. Relax in my presence, trusting in my strength.
Yea Lord, I trust you.
1400- all done. lord, bless these parents who donated their umbilical cords so someone like me can live without Leuk. Bless these children too. Patrick and I danced to "our song" in the hospital. We celebrated the gift of new life.
5/15/15- Day plus 1- I don't feel so well. I am back at our rental place which is great, but not feeling so good. No fever thankfully. But am nauseous and achy. I have to take so many pills each day that I resorted to a dry erase board. I just checked off three. Going to give myself some time before I take any more. One has to be on empty stomach, one has to be given two hours from any dairy products.... You get the picture. I'm just thankful we did it! We are done with the transplant. I am told the hardest part awaits. I remember how Logan did after transplant and I know it's going to be hard. I think at my lowest point will be when Patrick goes home and my parents and three friends arrive. that's the time frame for when my counts will be the lowest. Now Patrick will just worry about me. But he has to live his life too. It will be okay.
Every morning I have to go to Station 94 and get labs and see the doctor. If I need blood products they have me come back. They want me walking to and from the clinic. Unfortunately I lost the charger for my Fit Bit so I am not getting credit for walking! That's just so unfair. You will just have to believe me when I say I did it.
I ended up at clinic for about four hours. I was dehydrated, low on magnesium, and potassium. Lots of fluids running through my veins today. I also have to take two shots a day; growth factor and blood thinner. I slept about five hours when we were finished! Patrick was able to go exploring and caught himself some nice bass. I'm glad he can do that. He just made me the best dinner and I ate it all. Nausea is still at bay, thank you, Jesus. I am developing cold symptoms so please pray they subside. That can make me end up in hospital.
I got the cutest One piece WW pajamas and socks today! I feel so loved! The nurses cracked up over all my WW fare. I really like Mayo now. I'm getting great care.
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