This is the third section of my blog. First starts with My Journey
Part of the Process
5/16/15- woke up at 0300 this morning. I'm not surprised since I slept so much yesterday. I feel like I'm getting a cold which is not good. Whenever I stand up I see white stars. I could be dehydrated again.
Eight days and my parents will be here. But in nine days Patrick goes home for a couple weeks. I'm going to miss him. I get three bonus visitors while he is gone. Darlene, Dorothy, and Amy! Unfortunately that's probably the time I will feel the worst. But they can read to me and rub my feet, lol. We will make the most of it. Soon it will be June and Meg and Ollie will be here along with my mother-in-law. I have so much to look forward to.
Today's Jesus Calling:
I am your Lord!Seek me as a friend and lover of your soul, but remember that I am also King of Kings-sovereign over all. You can make some plans as you gaze into the day that stretches out before you. But you need to hold those plans tentatively, anticipating that I may have other ideas. The most important thing to determine is what to do right now. Instead of scanning the horizon of your life, looking for things that need to be done, concentrate on the path before you and the one who never leaves your side. Let everything else fade into the background. This will unclutter your mind, allowing me to occupy more of your Conciousness. Trust me to show you what to do when you have finished what you are doing now. I will guide you step by step as you build your way to mine. Thus you stay close to me on the path of peace.
Oh Lord, I pray that these 100 days of healing proves to be a special intimate time getting to know you more. Let me not be afraid to share your love with others. Teach me to be patient and encourage me when things get bad. This is just a short season in my life. You have directed and guided me during this journey. I know you will never leave me.
I am sitting in a room at Starion 94- that's the place I come to everyday for at least a month. I am hooked up to IV fluids and will be getting IV potassium too. I got my anti-nausea meds but no relief yet. I still have to get my two shots too. How fun! I sent Patrick back to the house. Poor guy is cooped up way too long. He's going to do my laundry and disinfect the house. Everyday that needs done. He's my superman. I'm listening to my praise music and thanking God again for the gift I have recovered.
5/17/15- Yesterday was a very long day. I was at the clinic for about five hours again. It's a full-time job being sick! Or should I say recovery is a full time job? The anti-nausea meds never did get rid of my nausea. It became tolerable; particularly when I slept. I'm thinking about sleeping the 100 days away. When we got back, I slept for about four hours. I felt good while I slept. I moved from the bed to the couch and managed to eat amother fantastic dinner Superman cooked for me. Afterwards I was lying on the couch and felt such restlessness I thought I would end up exploding. I had the trapped feeling I experienced when I was in the hospital in Idaho for three weeks. I felt like running, but no energy and I was sick. I suggested we go for a drive to see the pond where Patrick has been fishing. As soon as I got in the car I knew I made a mistake, I was terribly nauseous, but determined to stop whining and just go. When we got back I went to bed. I woke up so sick. I had a terrible headache and body aches. I was scared I was going to end up back in the hospital. Thankfully it got better. I tried praying but I couldn't get much out. God knows my spirit. He knew who besides me I was praying for. I don't just ask for relief for me; I have lots of friends recovering from illness.
These 100 days are going to be hard. When I get discouraged, I read a text or a message someone has sent me. It helps strengthen my courage and resolve.
Another five hour day in clinic. I needed saline and two bags of magnesium. I have reached "nater" with WBC. I am zeroed out: no immune system. I still have platelets and red blood cells so no transfusions needed yet. They are experimenting with a different anti-nausea regimine and so far so good!
I am so thankful and proud of Patrick. He knows my meds inside and out and is a fantastic caregiver. What a blessed woman I am.
5/18/15- Day plus four. 96 days left..thank you, Lord that I was able to receive this transplant. Please protect me from infections while I recover. Help me to be grateful and appreciative and not sad because I don't feel well. Help me to rest in your healing and not be discouraged because of how I feel. I trust you to protect me and help me feel better.
The day was hard. So hard that I asked for a wheelchair to take me up to Station 94. And I didn't even feel guilty about not walking. My BP is still really low and I lost more weight despite the amounts I am eating. I was filled up with fluids and IV anti-nausea meds. I slept there, came home and ate a quarter Pounder with cheese! I haven't had one in probably ten years. I then took a nap. We went back tonight for more fluids and more IV anti-nausea. Hopefully I will be okay in the morning.
It's rather ironic that we are watching Austin Powers.16 years ago Gary snuck that movie into Logan's room after transplant. I was out for the afternoon and they pulled it off. I never would have approved of my 11 year old watching it! But here I am all these years later giggling because Logan got away with something and he and Gary shared that moment.
5/19/15- 0945 and been at clinic for an hour. I'm getting IV fluids, magnesium, platelets, and IV anti-nausea meds. Today is plus 5- --95 to go. I woke up nauseated in middle of night and it's just kind of hovering.
I sent Patrick on some errands. He gets so restless, but never complains. He will be going home for a couple weeks starting the 25th. My parents arrive on the 24th and I am going to request they bring me some homemade rolls from Granny. Hmmmm, she makes the best rolls ever.
We believe the radiation gave me the throat pain. I always forget that I feel the worst a week or two after chemo. Add radiation to that and it's not pleasant. But I am alive! I have the gift of new life. I can't imagine that Leuk will ever dare to come near me again.
Yesterday my sister-in-law sent me pictures of my son, my niece, and nephew planting at the greenhouse. I responded with "working with plants is such a healthy thing to do. Unless you are immune suppressed, then it can kill you." I thought I was pretty funny. I miss not being able to plant flowers, weed my garden, and help in their greenhouse. Next year I will make up for it! I miss my family.
I am back at Station 94 for second magnesium IV for the day. Right now, as long as I don't swallow, I actually feel good! When I first got here I was pretty nauseous. Patrick told me I had a big frown on my face. I'm glad he told me. I don't want to be a "Debbie Downer". Mind over matter! He made me homemade banana bread today. His first attempt at baking was a complete success!
5/20/15- the nausea left me last night and so far this morning at 0400, I still feel good! It's amazing how my emotional health heals when I'm not physically hurting. I am so thankful to be free of the nausea. I pray the reprieve is long-term.
'Jesus Calling'- "Trust me here and now. You are in rigorous training- on an adventurous trail designed for you alone. This path is not of your choosing, but it is my way for you. I am doing things you can't understand, that's why I say trust me."
Why are you in despair oh my soul? And why have you become disturbed within me? Hope in God, for I shall again praise him for the help of his presence. Psalm 42:5
Therefore, I will look to the Lord: I will wait for the God of my salvation; my God will hear me. Micah 7:7.
Thank you, Lord for the continued healing in me. I trust you. I have hope. I believe. Please be with all my friends who are sick. I pray for complete healing for them.
Today I was at the clinic for several hours. In the morning I received two liters of fluids plus magnesium and IV anti-nausea meds. I came home, ate a little chicken noodle soup, and slept for three hours. Managed some mashed potatoes and cottage cheese for dinner. My throat is so sore that it's hard to swallow anything. Tonight we went back to the clinic for another liter of fluids and more IV anti-nausea meds. This is my life. Swallow pills, get hooked up with IV's, eat what I can. I think I am doing really well overall. We walked to and from the clinic today and the exercise felt good. Tomorrow Patrick's childhood friend Tony arrives! The best thing about being sick is friends come to visit.
5/21/15- My one week birthday! Day plus seven, 93 days left. I am trying to convince myself that a throat full of sores is better than constant nausea. If I had to choose I probably would go with sore throat. Throat hurts bad but at 0530 I don't feel nauseous! These symtoms are from the radiation and chemo last week. I would say two more weeks and I should feel fairly well. That is, unless I get severe graft vs. host disease. We won't think about that right now!
Back at Station 94 for magnesium and fluids. I was warned by a doctor that if I didn't increase my fluid intake I will be admitted. The last couple days I haven't been able to drink much because of my throat. They keep wanting to give me narcotics for the pain. Narcotics make me nauseous. Why would I want nausea on top of nausea? No thank you! I will force the liquids down.
5/22/15- Day plus 8 -92 days left.
Got another liter of fluids last night. When we got back to the house I started running a temperature. I had a headache and body aches. Patrick (aka superman) checked my temperature on the hour until 0330. When it went down, he then slept. I am so fortunate to have such a great caregiver! He and my parents switch off on Monday. How can one woman be so loved? I am amazed at all the support and encouragement of so many.
Our friend Tony arrived yesterday. It's so good to see him again. I told Patrick he should thank me for being sick because he gets to see old friends! In just 12 days Meg and Olivienne will be here! Ammie may have ordered her some toys to play with. Papa wants to take her fishing. I sure am looking forward to having my MIL here too. We can celebrate Patrick's birthday together.
I am going to be completely healed. This is a rough process,but God will heal me.
When I got to the clinic today I let them know about all the white stars I was seeing. It got pretty bad. Turns out my blood pressure was crazy low- even lower than normal. I got a liter of fluids and guess what? My nausea is on break again! I feel really really well! I just sat out in the sun for about ten minutes. Boy, life is good now.
5/23/15- Day 9/91 days
Last night was the worst night for me. I cried out to God and told him I could really use a break. Everything hurt. My right shoulder muscle and right side of neck is excruciatingly painful. I tried ice, I tried heat, I had Patrick rub it- all to no avail. My throat hurt even worse. I consumed maybe five hundred calories yesterday. It's hard to eat when you can't swallow. I had body aches and a fever. I hope I have reached my lowest point because I don't have the strength to repeat last night. I understand how Job felt when he had so many calamities. God, I'm crying out to you and begging you to help me recover. I can't do this without you.
The nurse practitioner took one look at me this morNing and suggested admittance to the hospital. I, of course, said no. Then she wanted to look at my throat and I started vomiting. I agreed to be admitted. I don't know how long I will be here, but hopefully they can get me better soon.
The day has been rough. I spiked a high fever and had body aches and chills. They took a lot of blood for cultures. Right now I feel fantastic! I even ordered dinner. I have hardly eaten in days because of nausea and throat pain. These moments of feeling good just cheer me up and give me hope.
i was told I may be in the hospital for two weeks. We shall see..... The doctor did say I'm going to get worse before I get better. Not what I wanted to hear, but I guess I haven't hit rock bottom yet.
5/25/15- somehow I missed a day. My days are blurring together. If it weren't for them writing the day and date on the board, I would be completely lost. Today is day 11-/89 left. Today I am going to start negotiating an earlier release. I'm pretty good at negotiating. My parents got in last night and Dorothy and Darlene arrive tomorrow. Mom and dad wI'll drive to Indiana to visit friends and family.
I have this red glow oxygen sensor on my finger all the time. Rudolph, the Red fingered reindeer. Or maybe more like ET. Phone home..... For those of you to young to get my silly jokes, my apologies. I didn't sleep much last night due to loud nurses who were in and out of my room every hour at least. The ANP told me this morning that they have one guy here who started engrafting at day 15 and another who is at day 25 and still not engrafted. I vote for day 15!
5/26/15- Day 12/88. Last night was another night of Hell. I spiked yet another fever, vomited a couple of times, developed a strange rash from head to toe, and I'm swollen in my stomach and feet.to add yet another thing, I had on a scale of 0-10 pain- 10 for my shoulder and muscular Pain. The nurse practitioner ended up giving me a massage which helped some. They have " complimentary massages" and my name is on schedule for first available appointment. My blood sugars keep bottoming out. They made me drink juice to get it up and that's why I threw up that time. The first time was because they gave me a narcotic for my back and shoulder pain. I keep trying to tell them narcotics make me sick.
My WBC was up to .200 today. Wouldn't it be cool if I were already starting to engraft? These French babies may have strong cells! My ANC has to be five hundred three days in a row or 1000 for one day to be considered engrafted.
Darlene amd Dorothy arrived this evening. Sure is good to have them here with me. They went to a Vietmese restaurant and are going to bring me back something yummy! Thursday will be two weeks! despite the many complications as I am having. I will continue to protect myself. I want to win! I have been having headaches and suffering from my nose either being completely stuffed up, to running like a faucet, I told this to several doctors and no one seemed concerned. Today I was told they needed to do a CT scan on my sinuses. Several hours later a doctor walked in saying he was going to put a camera up my nose to make sure I don't have a deadly form of fungus. Wow! Flashback to 16.5 years ago when we young parents were told "your son has a fungal infection and he's going to die". He assured me I don't and I asked him to be sure.
5/27/15- day 13/87- Today Kelsey takes her test to pass her nursing Boards. I am sure she will pass on the first try. She's a smart girl. We are so excited for her and so very proud.
Today my WBC went up to 300! Here's some progress! I'm on my way. I think my Frenchies like my body. A lot of new area to explore!
I ordered a nice lunch today- meatloaf with mushroom gravy. I ate a couple bites and noticed the burger was pink. All the food safety books on BMT's say ever eat any undercooked meat because it could kill me. I let my nurse know, who informed the doctors, and they all said they think I will be fine. Today also they removed peripheral IV that they put in because of all the extra fluids they have put in me. In less than a week I have gained 15 pounds because of fluids. I am huge and covered with red dots everywhere.
Darlene and I went on a nice walk this afternoon all around the clinic. We went to the Subway level and checked out some stores and got some sugar-free frozen yogurt to take back to the room. Now Dorothy is back from her appointment and we are going to have a big party!
After our "party" I had two hours promised for a nap with no interruptions . Lo and behold after 30 minutes I woke with a horrible backache. Things just hurt everywhere and at very inconvenient times. It might be things are hurting because I've started the engrafting process. I hope so!
5/29/24- Day 14 it is about 0145 and it took me about ten minutes to write the Date. I was in an excruciating amount of pain yesterday. They did an MRI and confirmed all the pain was due to engraftment of one of my little French babies! Yesterday I had an ANC of 280! Yahoo!
i have to sleep.
6-1-1;- day -18.My apologies for being incognito. Truth is, I have been very sick.
6/3/15- day 20/80 to go.
i have been one sick puppy. Vomiting, swelling, rashes, immense nausea, you name it. Today I felt good enough to ask for a day pass. My medical team says if I do well they will release me tomorrow. I knew this was going to be hard but I underestimated it. Logan handled this so much better than me.
6/4/15- day 21/79- after 11 days in the hospital I was released today. I am thankful to be out. I couldn't sleep the last two nights. I think tonight will be much better. I was talking to the nurse practitioner today and she was saying how pleased she is that my WBC went up so quickly. She told me how well I am doing. I promptly burst into tears. All I could think about was how well Logan appeared to be doing too. He fought like a champ and I don't deserve to live anymore than he did. Yet here I am fighting so hard to remain here with my family and friends. Why should I be spared? But I want to be.
Last night I asked God if he was keeping me awake. Was I supposed to be praying for my sick friends and those in need? Was I supposed to be singing songs about him? I decided to do both. I sang old time hyms we rarely hear anyMore. I prayed for the sick and the addicted. I prayed for my family and I prayed for me. Sometimes I think I get too caught up in thinking this is my destiny and I have to grin and bear it.No more! I will not forget to fight.
6/5/15- day 22/78. Made it past three weeks! Yahoo! "one thing I do, I press toward the goal for the purpose of the upward call of God in Christ Jesus."
To my dismay I had insomnia again last night. I finally went to sleep from 0330-0630. Maybe tonight will be better. My WBC count went up even more and my doctors are thrilled. Platelets are back down to 8k so will be getting a transfusion tonight. Less nausea today, thank you Jesus!
Unfortunately my parents leave tomorrow. They were here when I was at my worst and very boring . But Meghan and Ollie will be here tomorrow. I have such a good care team!
6/6/15- day 23/77. My chains are gone, I have been set free. I'm listening to my praise music with tears streaming down my face. Today didn't start off well. I was severely nauseated- sitting on floor of bathroom dry heaving. When I tried to get up I hit my head on the sink. I am now in the clinic getting fluids and anti-nausea meds. Dorothy was right- listening to my praise songs does make me feel better. She tried to get me to listen to music while she was here and I refused. She is such a good advocate. I was thinking about her, Darlene, amd Amy who recently visited. What wonderful encouragers and advocates. How blessed I am.
Meg and Ollie missed their flight. I can't be alone, so Mom and Dad changed their flight to stay an extra day. I'm happy they aren't leaving yet! Today I get to see an old friend from Indiana for the first time in 32 years! I'm glad Eric cares enough to come see me. People are so good.
6/7/15- day 24/76- meg and Ollie got to house about 0300. Ollie came running in repeating, "grammie's here, grammie's here!" What a joy!
I have had constant nausea today. It just won't let up. I try to eat, but I can't really choke anything down. I'm afraid they are going to have to give me IV nutrition. Please pray the nausea goes away.
6/8/15- day 25/75- tomorrow they are going to stick a camera down my throat and biopsy my stomach. Plan is to find out if the reason I'm so nauseated and my WBC's are dropping is because of graft vs host. I was less nauseated today thanks to prayers and a new anti-nausea meds. But it also put me to sleep all day. It hurts me that I don't have the energy to play with Ollie.
6/11/15- day 28/71- initial tests results came back fine. Final should be in any day. I continue to be very weak and nauseous. praying for permanent relief soon. each day in the clinic seems longer and longer. Spent about 8 hours there the day before procedure. I had to get two double bags of platelets.
Yesterday we went to a thrift store and got Ollie a play kitchen , art easle, big wheel, and a swimming pool. She's having a fine time!
6-12-15-day 29/70- almost to day 30! Today I am feeling a bit more alive. Still lightheaded when I get up so I have to shuffle around lIke an old Grammie. Nausea seems better today and I managed an egg for breakfast. Ollie seems to understand Grammie has to go to hospital a lot and take medicines. Yesterday was Patrick's birthday. I tried to give him a break last night by having meg go with me to hospital. It's nice he has the support of his mom, meg, and Ollie here. I know it wears on him having to take care of me.
The final tests results from biopsy show mild GvH. So now I have a new medicine. Hopefully that will help take care of the nausea. Unfortunately that med can make my blood sugars out of control so I have to be careful.
i apologize for not keeping up with blog. It's hard to find the energy. This is the hardest physical thing I have ever done.
i sat in shade for awhile today and then took a nice nap. Have to be back to clinic in bit for 2nd visit. Patrick made spaghetti and I am going to try and eat.
6/13/15- day 30/70- Today I don't feel as nauseated, but I am lightheaded. I'm also very grumpy. Frankly I'm sick of this and just want to be done. I heard that one of the ladies I have been praying for is still sick at day 186. Lord, I don't have the courage to keep this up that long. Another girl I've prayed for is very sick after her second transplant. Why is there so much pain and suffering?
This morning I was the first one up and heard Ollie call for mama. I took her downstairs and fed her cereal. She is so forgiving of my lack of energy. I will make it up to her by being the best Grammie I can be when this is over.
i feel like such a burden on my family. It's not right that everyone's life has to be put on hold for me.
6/14/15- Day 31/69- Moving right along! I woke up very dizzy and lightheaded today so I'm sure I need fluids desperately. I did manage to eat a bowl of raisin bran so there's some progress!
Im in the clinic and waiting to be seen. I just want to go back to bed. Meg wants to meet up with friends today at the zoo in St Paul. I hope we can make it work.
Meg amd Michele did get a nice break at the zoo and I'm so glad.
My BP was very seriously low so I got fluids and magnesium twice this day.it was kind of a blah day. I felt better so felt bored and anxious. Not good enough to do much, but enough to wish I could. I craved a fish sandwich from McDonald's. Now McDonald's isn't a restaurant I frequent, but when something actually sounds good, I have to eat it. I keep getting told that I either start eating and drinking or I'm going to be put in hospital for IV nutrition.
Going back to the clinic I heard one of my favorite songs."blessed be the name of the Lord, blessed be the name. When the darkness closes in, Lord, still I will say, blessed be the name of the Lord,
6/15/15-day 32/68- I feel good! Thank you Jesus! Today maybe we can go sightsee a bit!
we ventured out. I didn't last very long, but it was good to get out. Now it's time for a nap. My heart is heavy thinking about my beloved Alaskans having a forest fire so close to home.
i see all the sick people at the clinic and I realize how blessed I am. Things seem to be going well. But I just read that there has never been over a 25% cure rate. Until now I have avoided reading anything about statistics.
Back in clinic for more fluids. I did so much better eating today. My dietician is going to be very happy with me! I finally see the light at the end of the tunnel. I look forward to being all better and helping others. I wish I were home helping those who have been evacuated due to the fIre. I just haven't done enough to help others.
6/16/15- day 33/67-I am a third way through! Today started off rough. I was very dizzy and lightheaded. I am waiting for fluids. Every morning the vampires come in for blood, then the CNA checks my BP lying down and standing, plus my weight. Then the dietician comes in. Today Joy was very pleased with my efforts yesterday. Then the fluids start, then the doctor comes in. Same old same old.....
Today I hope to do a little more than yesterday. It's time to start pushing myself.
God's Word says there's no hopeless situation, illness, marriage....Our hope is the anchor of our soul ..the confident hope of Jesus Christ's return. (Jesus Today)
We're depending on God; he's everything we need. What's more, our hearts brim with joy since we've taken for our own his holy name. Love us, God, with all you've got- that's what we are depending on. Psalm 33:20-22.
Your life can be good even when many things are not going as you like. You yearn to feel more in control of your life,but this is not my way for you. I want you to learn to relax more in my sovereignty,receiving each day as a good gift from me-no matter what it contains. Remember you are not responsible for things beyond your control. Accept the limitations of being a finite person and keep turning toward me. Cease striving and know that I am God. Awareness of my face shining up you can Instill joy upon the most difficult day.
Lord, you know my limitations. You know how I feel. You know I'm not afraid to die, yet you know how badly I want to live and serve you here.
6/17/15- day 34/66-back in clinic very dehydrated. Overall I feel pretty well. I'm listening to my praise music thanking God I feel as well as I do. I've felt worse. I know how bad it can get. I also know people in my situation have it worse than I do. Some don't have loved ones to care for them like I do. Some are rejected and alone. I don't take your love and concern for granted.
How I wish I were back in AK helping those who have been evacuated by the fires. I want to help. It's a helpless feeling being stuck here when my neighbors are hurting. God, please send the rains.
I have been dreaming about getting a fungal infection like Logan did. I can't control my dreams, but I wish I could. I wish I would just dream about Logan being healthy. Wouldn't it be great to have him come and walk me through this in my dreams?
I am fighting to live. Why are so many trying to die? I got stuck by a dirty needle, the medicine (I'm convinced) caused me to get a rare form of leukemia. Then there are those who deliberately use needles to make themselves high and get diseases and die! Do they not appreciate life? Life is precious.
Take me to the secret place where I can only see your face. I stand here in this place and see the glory in your face. I am taken by the wonder of your name. I'm desperate for your touch. Ive never needed it so much. All I want is you. All I want is you.
Lord, please heal your land. Heal my friends who are sick. Quiet the minds of those mentally ill and contemplating suicide. Heal the addicted. Give them the strength to deny the drugs and say yes to your healing power. Come LordJesus, come. Come and free us.
It's crazy,but I feel so good right now! It's amazing! How wonderful to have a break and to feel encouraged that there will be brighter days ahead when I feel good and resume normal activities. I am so happy.
6/18/15- day 35/65
This morning was a little crazy when we realized my MIL left at 0930 today and she thought it was Sunday. I have to say she can get ready quickly! We are going to miss her so much. She was so helpful and encouraging. She bonded so well with Olivienne. We loved having her and are sorry to see her go. We have enjoyed her so much. What a blessing to have had her with us.
I am back in clinic for fluids. Hopefully the new medicine will raise my blood pressure so I can stop coming twice a day. it is getting old.
I had to return early to get red blood cells. First time in a few weeks I think . I found out they did this test called Chimerism and I am 100% donor cellular DNA! Praise God! I'm also getting magnesium amd fluids. I had a biopsy on my hand today to see if it's graft vs host. I'm peeling like a potato Or a rattlesnake..
Patrick, Meghan, amd Olivienne are at the festival they have every Thursday in Rochester. I wish I were with them, but I'm glad they are having fun. After getting blood and fluids I felt very ill. I was so nauseated and had a low grade fever. Thankfully it went away. Ollie ran into my room amd said, "I've been waiting for you Grammie!"
6/19/15-day36/64- it looks like it's going to be a beautiful day. I feel so much better today. I'm at the hospital getting the usual fluids.
Today I went on a short walk at a nature park, went to Costco, and took a three hour nap. I feel successful!
Today I realized some of the hardest things I had been dreading I completed. Radiation, catherization, not brushing my teeth for a month, Etc. I completed it all! I'm doing okay. The things I cared about, the hair, eyelashes, eyebrows, are gone. I don't care how I look. I proudly display my bald head. I earned it! I'm going to be okay. God is great!
6/20/15- day 37/63-today has been an off day.I have an overwhelming feeling of exhaustion.. Perhaps the walk yesterday was a bit much. I'm starting to feel a little bit better. Just in time to go back to hospital for fluids. Tomorrow is Father's Day and my dad is a long way away. I miss him. Normally I make Patrick a big breakfast and I can't do that. At least Meg is here to take care of her dad. Sometimes this seems like it will last forever.
6/21/15- day 38/62- another off day. I'm nauseated and so fatigued. I vomited today. BP is extremely low again. I go back to hospital in a bit and also have to get potassium over two hours. I wish I felt good. Patrick, Meg, and Ollie went fishing so at least they got a break from this.
6/22/15- day 39/61 I'm almost halfway to day 100. Unfortunately I feel like I took three steps forward and five steps back. I'm so unbelievably exhausted and the nausea is back. I'm so tired of being at the hospital twice a day seven days a week answering the same questions. I'm so done with this. Tomorrow Meg and Ollie leave. I'm going to miss them so much. Meg has been a huge help and Ollie loves and accepts me despite my limitations.
I got to feeling a little better this afternoon, so what does an all-American family do on a hot day? We go to Wal-Mart of course. Ten steps in the store and I was sick again. Went to the car and the car wouldn't start. There is some issue with the auto start that shuts down the battery. Jumping it didn't help. So I prayed as hard as I could and it started.
i came home and took a nap. Ollie came in to roll around the bed. I told her I would miss her when she goes on the airplane. She said, "I miss Grammie too."
While I was napping I had a call that VM picked up. It was from a dear lady who has been fighting cancer for years. I simply ask you to pray for her. She hurts so bad and is so weary from the fight.
6/23/15- day 40/60- today our girls left. It was so hard to say goodbye.
Today started off really rough with nausea and fatigue. Doctors are quite concerned. I believe it's the prayers helping me feel better. I tested positive for a virus. Now I have to have IV antiviral twice a day. I'm also on a new medicine to help my GVHD which will hopefully ease nausea too. I had a breathing treatment today to prevent pneumonia.
When I think I can't take anyore, God sends me relief. Thank you, father for an afternoon without nausea. I will praise you in the storms as well as the sunshiny days! You are my God and I shall forever love you! It doesn't matter what happens. You are my number one.
6/24/15- day 41/59
Today is Logan's birthday. He would have been 28 today. Today won't be an easy day as I am going through the same thing that took his life. I love you, Logan and I know you are happy in Heaven. No other posts today. Today we honor our first born.
6/25/15- day 42/58
i love seeing these numbers change each day. I'm so ready to be done. Two days ago I stopped getting fluids twice a day. Although my BP still drops when I stand up and my heart rate goes up, I want my body to learn to cope on its own. After these two weeks getting IV anti-viral, I hope to be transitioned from outpatient hospital to the clinic. The clinic is twice a week! How wonderful that will be. I plan on healing up just fine and going home.
Today we may take a drive to Lacrosse, WI. We went there before but I was extremely nauseated from the medicine given to put my Hickman line in. I did not enjoy that trip. I hope today will be better and we can get out and enjoy the outdoors.
Saturday my friend Faith will be visiting me and Sunday my niece, Michelle, arrives. On the 2nd, Patrick leaves for a month and on the 4th, Mom arrives for a month. The changing of the guards. I am thankful for my good caregivers. I miss all of them When they aren't here.
We decided to go to Lake City and several surrounding small towns. What a great day to get out! Even though I have to wear a mask and a huge hat for sun protection, I didn't care what people thought. I am so past how I look. Thankfully my husband doesn't care either. He took "in sickness and in health" seriously. I am blessed.
6/26/15- Day 43/57
Today I am weepy. I'm not sure what's going on. I am overwhelmed with gratitude for the support I have. Who am I to deserve this? Who am I that HE is mindful of Me? I'm amazed at the love my God has for me. I am not alone.
When Logan was sick he asked me to find a verse in the bible to comfort him. II Corinthians 1:3-7
Praise be to the father, our Lord Jesus Christ, the father of compassion and the God of all comfort who comforts us in all our troubles,so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over in our lives, so also through Christ our comfort overflows. If we are distressed it is for your comfort and salvation ; if we are comforted it is for your comfort, which produces in you patient endurance as the same sufferings we suffer. And our hope for you is firm because we know just as you share in our sufferings,so also you share in our comfort.
Oh, Lord,my heart is heavy. I have such a burden for the sick and the addicted. My heart hurts for my friends who are sick. I have three friends right now who are in terrible pain because of cancer. I have three other friends who just had skin cancer removed. I have a friend who has multiple issues and is in constant pain. I know so many who need healing.
My heart is broken for those addicted to drugs. I pray daily for so many who choose drugs over God and their families. Lord,heal our land! Use me, Father, I want to be a comfort to others.
My chains are gone. Ive been set free. My God has ransomed me.
6/27/15- Day 44/56
We ended up going to a movie and taking a walk yesterday. It was good to get out, but I may have overdone it as I got very nauseous yesterday. At least I waited till we got home to throw up! It was a bad night. I'm a little nauseous today and am lying in bed all day except for my two hospital visits. My friend Faith comes tonight and I look forward to seeing her.
Most likely I am nauseous from GVHD- Graft vs Host Disease. It's in my gut. Let me explain it this way, my little French babies have 100% taken over my bone marrow. That's good. But the French babies want to fight my body. They are saying, " this is MY body, you don't belong here." My body is fighting back and saying "I was here first!" And the turmoil in my stomach begins.......
Spent my day lying in bed. It helps. Just have to get up for second hospital visit today.
6/28/15- Day 45/55 and my 29th anniversary!
Still nauseous today despite all anti-nausea meds. What a shame! I want to go for road trip but not sure I should.
Happy Anniversary to my awesome husband whom I love so much.
Counts are really good today. Platelets, ANC, WBC- all normal! Tomorrow I will get the virus level checked. Today I fought the nausea, but managed a good day with Patrick and Faith. We went to Lacrosse WI to the bluffs and took some pictures.
My talented DIL painted our mailbox stand as anniversary present. It looks so good!
God is good!
6/29/15- Day 46/54
My niece Michelle arrived and already started disinfecting house. Shes a good caregiver and will be a good nurse. Tonight she starts clinicals- Home Health is coming to teach us how to do IV meds at home so I dont have to go to hospital twice day. She will have a jumpstart when she goes back to school next week and actually does clinicals.
Today I had a bone density test. Seems the steroids put me at high risk for bone disease. I don't think it will be an issue though. I refuse to believe all this crap they give me will cause long term damage.
The steroids though have wreaked havoc on my blood sugars. I am no way in control right now. Trying to get that straightened out. That's temporary problem which, I admit, could cause long-term problems if I don't get a handle on it.
6/30/15- Day 47/53
Yahoo! Almost half-way done. Tomorrow I see Dr. Hogan to discuss the last half of my treatment. I truly hope amd expect I will be one that they let go home early. Even if I have to come back at day 100 for bone marrow biopsy and further testing I would be okay with that.
My virus level went way up. It's frustrating because they delivered all the medication last night and today changed the dosage. What a waste of money.
Today we took Michelle on a road trip to Nelson, WI. We went to the Creamery and bought some cheese and had lunch. It was her first time in WI. She and Patrick went fishing. I'm supposed to be napping, but at least I am "resting". I just ate a bowl of cereal for a snack. I've gained two pounds!
Meghan just sent me a cute video of Ollie telling me (pretending to call) that she was making "Ollie's soup". So cute! I miss them. If I weren't so far from home I could take a few days I bet to visit.
I had quite a bit of nausea today but right now I feel okay. God is great!
7/1/15- Day 48/52
I waited till end of day to update because I had so many appointents today. Dr.Hogan was my last one. We talked about my virus that isn't cooperating, and my GVHD. I may have to get another endoscopy to see if GVHD is worse or if virus is also in gut. They keep talking about putting me on steroids, yet I do not want prednisone. The steroids I'm on now already messed up my blood sugars so bad. He's giving me till next week to feel better. If I'm not, a scope will be done again.
Overall he is quite pleased with my progress, as am I. My babies took over nicely and mostly things are on track. I ask for prayer to get GVHD and virus under control quickly. I did get transferred to Charlton 9 so no more daily hospital visits, praise God!
7/2/15- Day 49/51
Tomorrow is half-way there! Wow! I am just finishing up my morning home infusion. My caregivers sleep in so I just hook myself up. Michelle gets nights. Today Patrick leaves. I'm trying to be brave. How do I say goodbye to him? It's going to be so hard. He takes such good care of me. He cleans the house, cooks for me, and helps me with everything. He sure can use a break though.
Yesterday I was told it will be about a year before I feel normal again. That was a disappointment. No gardening for a year either. And I have to get everyone of my childhood Immunizations again.
I admit there were tears after Patrick left.
7/3/15- Day 50/50
Thank you, Jesus! I made it to half-way mark. I woke up this morning at 0500 feeling so happy and grateful. I am so very blessed. I have a savior who loves me and a whole bunch of family and friends who are supporting me. I am so grateful that we have money to pay our expenses down here, that I have awesome caregivers, that I'm in the best place for treatment, and I am overall doing well. God is faithful.
Yesterday Michelle and I walked to Mayo. I humbled myself and borrowed a wheelchair. She pushed me around the Thursday festival and back home. I was able to get a little exercise, enjoy the festival, and not tire myself out. God has humbled me for sure. I am no longer insistent on doing things the hard way. I will still work on rebuilding my strength, but I will be smart about it.
7/4/15- Day 51/49
Less to go then there are days to continue. The way I felt yesterday and this morning concerns me. I spent most of my day in bed resting because of the nausea. Today I woke up at 0345 with body aches and nausea.
Today is the 4th of July- God Please Bless America! We have choices on how we can be good stewards of our land. We have a choice on how we can treat our fellow Americans. We have choices because we live in the land of the free. We are free to be different and we have a right to not be judged by anyone but God. We have a right to complain or we can decide to accept our circumstances. We can be angry or happy. I choose to be happy and accept my fate, but I will fight as hard as any American can to destroy the war that goes on inside me. My friends with illnesses;fight as a soldier would!
And to our soldiers, I am grateful for your service. You are protecting ME and you don't even know me. God bless you.
Today's Jesus Calling ends with this: " The greatest blessing is nearness to me- abundant joy and peace in my presence. Practicing praising and thanking me continually through this day."
How fitting! Our country was founded on Christian principles. Let's not let go of that. God runs this nation. Let's be good helpers.
7/5/15- Day 52/48
I confess I have been secretly resentful looking at normal people just walking around and having fun. I am ashamed of these thoughts. Jealousy for good health has no business being with me. I do not know if these "healthy" people are really healthy! They may have constant pain, illnesses, money issues, maybe they are abused, threatened, in danger. Maybe they are just healthy and happy! I thank God if that's the case and I ask forgiveness for my jealousy. It's not like me to feel that way. Satan has planted the seed but I won't let it grow. My nature is to be happy for others not resentful. Please forgive me, Jesus.
Yesterday was an amazing day. I felt so good and Michelle and I did so much. We walked to and from the hospital for my exam and blood tests. Almost all my blood tests are normal! We went to the mall and to walmart. I ate good meals. We stopped by Red Lobster so I could buy biscuits. They gave them to me for free! There are good and caring people in the world. We could see the fireworks display from our window at the house. My Mom arrived! So many blessings.
Jesus Calling today, " Draw near to me with a thankful heart, aware that your cup is overflowing with blessings. Gratitude enables you to perceive me more clearly and to rejoice in our love relationship."
Thanks to one of my very best friends, I have a number for an oncologist in Anchorage who works with leukemia patients. Monday morning I will be calling her to see if she will take over my care when I return home. She already works closely with Mayo Clinic. I am so excited! My doctor wants me to make the initial call and then he will follow up. If the nausea gets under control and the virus goes away,I am sure I can come home early!
I was disappointed to hear that I can't garden for a year and I will be fatigued for a year. I just thought come day 100, it would all go back to normal. I already have plans for working out. When the weather is bad I plan to join the MTA Center because they have a track. I can walk on my way home from work. When I get stronger I can do some fitness classes. It will be nice to exercise before I get home instead of going home, doing chores, then going to the AK Club to work out, only to not get home till 9! I'm so excited for the future. I will visit family and friends more. Nothing will be taken for granted. I want to get more involved in community affairs and help those in need.
I want to rent a place and have a celebration of our success in killing Leuk. It will be an open invitation. I think I will order two huge Costco cakes and do appetizers. I'm so excited to celebrate with my community!
Michelle leaves today and I will miss her so much. She's pampered me and has given me great care. I love her like a daughter. Logan loved her like a sister. He even insisted she go on his planned Make-A-Wish trip. He wanted to go to Mexico. He and Jay Buhner played video games and discussed it. When he saw Jay walk in the room he couldn't hardly talk because he was so excited. His Seattle Mariners hero! It's so awful to see a child suffer with cancer. They sure handle it better than adults.
Never will I take feeling good for granted again! It's the third day in a row when I feel good! Praise you, Jesus! I never felt I was one to take things for granted. Everyday (before Leuk) I would thank God I felt good. I would thank him for my family, friends, animals, my job, my house, my car starting, food in fridge, Etc. I believe I was grateful. But now- doubly grateful! Everyday I am more confident HE is going to allow me to remain on earth and do his works. I am so excited not to be nauseous!
Today I have an appt at the clinic and blood tests. Praying my virus level is non-existent! Mom and I are going to walk to the clinic. It rained this morning so it's cooler out, which is not a bad thing.
Yesterday was a fabulous day. Mom and I walked about two miles. I was so tired by the time we got home that I took a long nap. The doctor was very pleased I have been nausea free and that I'm feeling good. My blood counts looked awesome. Still waiting for the virus level.
This week I get to see my friend Diane from Kasilof. She is running a marathon here in Rochester. We also get to see our former Alaska neighbors, Lisa and Jerry. I'm really excited to see familiar faces! I'm so loved and am so grateful.
I am still feeling great! I am tired,but still nausea free, thank you, Jesus! I have been working on a scrap book. Am I the only one who has stuffed announcements and pictures in drawers for years? Every time Ollie would come over she would pull it all out. I finally got wise and said, "I am going to have a lot of time on my hands. I should take all this to MN." Oh it's a daunting task, but I am excited to put it all together. There is nothing like holding a photo album in your hands. I want something that can be passed down to my kids and their kids. It's history!
I just got concerning news. My virus level went way up instead of down. Prayers are needed.
i haven't felt good all day. I'm not nauseated, just don't feel right. I have a low grade temperature. I see the specialist about the virus tomorrow.
i am enjoying visiting with my friend, Lisa.
Been at Mayo since before 0700. Today I have multiple visits. First on list was blood tests. I have a nice double lumen Hickman that works great. But since the nurses contaminated both lines with my immune suppressive drug, they have to do peripheral blood draws. Which means my poor little arms are all scarred up again. I had to come with my IV hooked up. When it was finished I had to disconnect in the restroom. The other night I went to Walmart with it hooked up. Total redneck move, but at least I was wearing proper clothing!
I had a blood test done to see if I'm resistant to the anti-viral. The test results won't be back for several days. The specialist I saw today wants to increase the dosage but we can't until my primary doctor agrees and he was out today. We are trying to avoid the other drug because it can cause kidney, liver, and other organ issues and seizures. Prayers appreciated.
Mom and I really enjoyed our visit with our friend Lisa. Lisa used to live in Alaska. She was a joy to have here. Our friend Diane will be here Saturday as she is running a marathon in Rochester on Sunday. We love our Alaskan friends!
Moving on up towards release! Today I am feeling anxious. I am so fed up with being here and held captive by my stupid illness. I want to go home. I miss my family. I feel so out of control of my own life. I depend on a team of people to make every decision for me. Frankly it sucks.
Tomorrow I get to visit with a friend from Alaska and Sunday I am hoping our friends from Iowa, whom we met at RMH, will be here to visit. Maybe that will help my mood.
Yesterday was definitely an off day for me. I didn't feel well and was frustrated. I took about a four hour nap which helped some. I also did some scrap booking and that made me feel like I accomplished something. I think a lot of my frustration is the lack of productivity. I am not used to just lying around. However, I don't have much energy so I am not motivated to do much. I have a performance based personality- the more I do, the more successful I feel. Right or wrong- it's me. I miss going a hundred miles an hour and fitting it all in. A week of lying around would be okay, but I am now on nine months of being sick and not accomplishing a whole lot. I feel guilty. I feel like I have let everyone down. Especially my family and co-workers. How I long to rewind the Clock. I would ever have picked up those needles and accidentally stuck myself. I would not have had to go on medicine that I believe caused my leukemia. But it did happen. God uses the bad for good. Sure it sucks bad. But good has come out of it. God has used my situation to minister to others. Maybe it has changed someone's life. If that's the case, it was worth it. We are here to help and minister to one another. I am here for you. Share your concerns and prayer requests with me. I have the time. I do not want to be self involved. There are a lot of hurting people in the world. My story is no worse than anyone else's. I want to help you.
Day 59/41- 7/12/15
Waiting to be seen at Station 94. I feel so fatigued and achy. Terrible timing as I planned to watch our friend, Diane, from Kasilof, run a marathon here in Rochester today. And our friends from Iowa, Tim and Diane, are supposed to be here in an hour. I guess they will be meeting me at the hospital.
Day 60/40- 7/13/15
Yesterday I got fluids and they took a lot of blood. Nothing is showing up so far. Today I feel awful. They want to see me this afternoon and all I want is a long nap.
Day 61/39- 7/14/15
I was put in hospital yesterday. Today I feel better and want out so badly. My virus level is way down which is an answer to prayer. Now my prayer is they will release me! I've slept more in the last 24 hours than I have in a whole week. I guess my body needed to rest.
Day 62/38- 7/15/15
i got a six hour pass to go back to the house yesterday. Oh how wonderful it was to get out of here. I'm pretty sure they will release me today, I feel really well now.
Thank goodness they released me. If one more person knocked on my door and said they needed to check my blood pressure, ask how I was feeling, etc., I think I would have lost it. I know they mean well, but it was annoying. I came home and took a long nap. Hopefully I will gain some weight with Mom cooking. I lost another three pounds.
Patrick will be here in thirteen days. Next week he will be at the cabin entertaining guests. I'm pretty bummed I won't be there this year, but I'm trying not to think about it.
I saw the doctor today to discuss virus. He's very pleased with my progress. He wants to keep me on same dosage since it seems to be doing the trick. But I have to gain weight or the dosage is too much. I'm trying! It's hard to eat when nothing at all sounds good and I'm not hungry.
Mom and I walked to the clinic and we walked around the Thursday festival too. I got some good exercise today and also took a three hour nap.
This morning I had to get my blood drawn. Two days a week they can't use my wonderful double lumen Hickman line that works marvelously. The nurses in the hospital used both lumens to infuse my cyclosporine which contaminated both lines so they can't be used to measure the level. So they must poke my tiny little veins. Last week the phlebotomist used my right arm and now I am swollen on my forearm. Today she tried left arm and after moving the needle all around, was only able to get a little blood. She decided to use my right hand and get just enough blood for cyclosporine level and had a nurse draw rest out of Hickman. That worked. I admit I was feeling a bit whiny- the whole, "Why is this happening" I just kept thanking God when we found a solution. It was a painful ordeal. Nothing easy with this process. I don't feel as well as yesterday, but I didn't sleep well and I think I'm just tired. I'm waiting to see my doctor now for twice weekly checkup.
Overall the doctor was pleased. I have to be on IV meds until I get two negative levels for virus. So that's at least two more weeks. Today Patrick goes to the cabin. He has several friends there along with two motor homes filled with my relatives. I'm missing all the fun!
Someone recently discovered he had a serious health issue. He blamed God for it. I want to remind you all God doesn't cause our sickness, nor does he revel in our pain and suffering. We serve a compassionate God who wants us to be well. When we are well, are we thanking him? When things go right in our lives, are we thanking him? Do we give him credit for the good, or do we pat ourselves on the back and marvel how awesome we are? I have always been in the practice of praying for things I want, need, and am striving for. If I get them I give God the credit. If I don't, I figure there is some lesson I need to be learning. Trusting him more and having patience is usually at the top of the list.
Jesus Calling- I am nearer than you think, richly present in all your moments. You are connected to me by love bonds that no one can sever. However you may feel alone because your union with me is invisible. Ask me to open your eyes so you can find me everywhere. The more aware of my presence,the safer you feel. This is not some sort of escape from reality; it is tuning in to ultimate reality. I am far more real than the world can see,hear,and touch. Faith is the confirmation of things we do not see and the conviction of their reality, perceiving as real fact what is to revealed to the senses.
i just found out my virus level is now down to 200 and I'm still 100% donor on the chimerism test. Yay God !
Tonight Mom and I used a gift card and went to Olive Garden. I ate a Lot! Hopefully there will be weight gain on Monday.
Day 65/35- July 19
Today I haven't felt well. It's almost 7 pm and I'm still in my pajamas. I have a low grade temperature again and my stomach hurts. I'm so tired of the ups and downs. I wonder if it will ever end. I'm not getting the exercise I assumed I would. I feel lazy.
Back at Station 94. They want to keep me overnight but I am resisting strongly to that plan. I'm getting my second liter of fludis. I made a deal I will come in twice a day for fluods if need be. I just can't spend one more night here.
is this ever going to end? I take two steps forward and one step back. So much for going home early.
Day 68? I think I messed up dates. I am pretty sure this is day 68. Today I woke up feeling nauseated and sick. I was wallowing in self pity until I got a msg from an old friend who is having multiple health problems due to an accident. I am not the only one with health issues. So many good people who are sick. I'm back at Station 94 and need two liters of fluid. I got a really nice offer to be admitted, but I politely declined stating the food is too awful. So, I am coming back tonight. Twice a day visits until we get my BP under control. When I walked into the Charlton Building someone was playing "It is Well with my Soul" on the grand piano. Yes, all is well with my soul.
Last night I tossed and turned all night thinking about my friend whose 14 year old nephew was murdered. All through the night I prayed for his family and all my sick friends. This world can be depressing.
I felt good when I woke up with the exception of being tired. Mom and I walked to clinic. By the time we got here I knew I needed fluids. There was a 40 point drop in my blood pressure when they checked it lying and standing. Yet another doctor came in to ask me to be admitted. They want to run a bunch of tests. However,all the tests can be done outpatient so I declined again. They just tried to do an echocardiogram, but the tech could not get a reading. She is sending a new tech and cart. I guess I am heartless.
Meghan sent me a couple pictures of Ollie yesterday that made me smile. I am so homesick. Here I am with supposedly 31 days left and I'm having issues that worry I will be delayed. Stupid blood pressure.
I continue to get cards in the mail and I am so encouraged to know so many of you care and are faithfully praying for me. I still feel confident God will see me through this. Honestly I wish I never got sick. But I did. Now I just have to get well and continue serving him.
Freedom is so close I can taste it. Will I have it, or will I be forced to stay longer? Will they kill my dream of being home in a few weeks? MY home I've lived at for years? With my family and friends ready to surround me? Please God, let me be cured and released. I am thankful to be in such a wonderful medical center with top of the line doctors. I am thankful to have insurance. I am thankful things have gone well so far. But I have been away from home for almost ten months. It's time to live again. Live at home surrounded by the ones who love me.
I have an appointment with an Anchorage oncologist who has agreed to follow my care. September 1st. It makes it sound more real. I see Dr.Hogan today and I have a long list of questions for him. Is he ready for me today?
To his defense, Dr. Hogan answered the questions to be best of his ability. However, there are too many what ifs. UNeil this virus is zeroed out and doesn't comeback we aren't certain. Same with my BP- must get it under control. The best thing he said was my donor cells are very strong. They have withstood all the extra treatment and issues without being hurt. I have little GVHD which is awesome.
My exercise regime will be slow and steady for months. He advised me to start working only half time because I will continue to be exhausted.i don't know if I can do that according to our Union Contract. I must keep my job as I am only one with insurance benefits.
We have nothing on our schedules today except my medicines. Maybe Mom and I will drive somewhere and walk by the water. There were so many fun things I promised Mom we would do and I haven't felt like doing any of it. We were going to go meet Faith and her family in Walnut Grove tomorrow for the Laura Ingalls Wilder Festival. It's a five hour drive. I'm just not up tp it. Thankfully I will still get to see the Golden's and hear all about their trip.
We did drive to Lake City and walked for 1.5 miles along the lake. We then drove into Wabasha and had lunch. We enjoyed the beautiful MN countryside. Before we left I got quite a bit of scrap booking done. I feel like ive accomplished something. Now if I could just get motivated to take care of some paperwork....
Day 74/26-July 27, 2015
i just realized July 23rd, the day I got stuck with the dirty needle came and gone and I never even thought about it. I figured I would be affected by various emotions that day. I guess I know it is what it is.
Yeaterday Mom and I got to visit with Faith and her family. They are moving not far from Rochester and took the time to come see us. How fortunate am I to be loved by so many people. I am a truly blessed woman. I want to get home to my loved ones.
Im feeling pretty lazy today. I have no medical appointments. A day off! I feel guilty like I should be doing something. I think I will take an early nap and then get a walk in after. I also need to buy a new belt. I broke mine trying to get it tighter. I will have to get a small. Seems like the more I eat, the less I weigh. I'm starting to eat more and more things taste better. Finally!
Wow, I like the looks of that number!3/4 of the way there. Amazing.
Yeaterday, when I felt good, I should have gotten my exercise in. I woke up extremely nauseated after my nap. I ended up just lying around all night. I feel a little nauseous this morning so I took an anti-nausea pill to head it off. I planned on us walking to get my blood drawn today,but there is another thunderstorm. We sure get a lot of them. I love the sound of thunder andI love to wat h lightening. But when I feel halfway decent I need to be walking! It's time to start doing some arm exercises. I need my muscle back.
This afternoon I have several appointments. The rest of the week will be busy too as they will continue doing testing to attempt to figure out why my BP is low.
My appt with Dr. Hogan went well. He is pleased with my process and feels my baby French cells are very strong. No mention of going home early which is disappointing. I have lots of testing tomorrow and Friday. This afternoon I will get to see my Alaska friend, Rachel,who moved from Alaska to Wisconsin. We will meet at "Kelly Park" in MN. Patrick is here now too! It's good to be together again.
We are up earlier than usual because I have autonomic testing at 0745. Another test to try and figure out why my BP is low. I have an echocardiogram this afternoon. I keep telling myself this isn't going to last forever, but right now I am fed up with medical appointments. I'm sick and tired of being asked the same questions by five different people each time I'm there. I want to be ME! I want to go home. I'm upset because my virus level still registers. Please God, heal me so I can go home. I realize so many have it worse than me. I should be ashamed for even complaining! I just am so homesick and tired of my body being inspected almost everyday. I'm tired of having to stop everything three times a day to take a handful of pills. Supposedly 23 days left, but my doctor is non committal. Plus he tells me I have to come back monthly. I can't afford that! I have an oncologist lined up in anchorage. I don't understand that.
Lord, please quiet my mind and give me peace and patience.
The autonomic testing went fine. Parts were uncomfortable, especially the part that felt like five minutes of wasp stings! It wasn't bad though. In between appointments we will go to the festival " Thursdays on First". I love walking around there.
Patrick took the car in because the breaks need re-done. Hopefully that won't be too expensive. We still have to get someone out to the house to check for mold and of course fix any issues. I need to go back to work and earn some money!
This morning I am reflecting on how much I am loved. First, there is God who has blessed me in so many ways. He has protected me, healed me, comforted me, and certainly has loved me. He has provided me with so many friends who have loved on me. Genuine people who stay in contact with me by phone, text, cards, emails, and visits. Friends who have faithfully prayed for me daily. Friends who have lifted my spirits. He has sent strangers who have become friends. I am truly blessed. He has used my situation to bless others. It is my desire that you come to know him through my experience with Leuk. Some want to know if I am angry with God. No, I am not. He didn't give me leukemia, but he sure as heck is walking beside me.
The appointment with the neurologist went well. Seems no matter what drugs they throw at me, God has protected me from devastating effects. No peripheral neuropathy. Possibly autonomic neuropathy,but the experts don't feel anything needs done- not even more testing. Thank you, Lord. You are so good.
I had a great visit with Dr. Hogan! He is so pleased with my progress. After Day 100 testing he said I could go home! I have to come back monthly for awhile. That's a bummer but since they are the experts they want to check me out to make sure local oncologist isn't missing anything. I'm so thankful. God has protected me.
Day 79/21 August 1, 2015
Thank you, God, my virus is now undetected! Yahoo! I meet with the doctor Monday to discuss the plan. Probably will go to once a day IV meds for awhile and then pills. Man, God is so good!
My friend, Stacey, came to see me! She drove six hours just to be with me. I'm so amazed at the love of others.
Life is good!
I just returned from my second walk of the day. I can just feel myself getting stronger and stronger everyday. I listened to my praise and worship music as I walked. Every time I listen to it I flashback to my time in Kootenai Hospital. This is going to sound odd, but my time getting chemo in the hospital may have been the best times of my life. Let me explain. I was newly diagnosed with a blood cancer after losing our son to complications following his cord blood transplant for his blood cancer. I had to rely on my faith that I have had all my life. I grew so much closer to the Lord because I was desperate for his touch, his calming presence, his healing. Listening to the music is such an intimate experience to have with Jesus. There's nothing like feeling like I am face to face with Jesus as I praise him through song. If you don't know what I am talking about, you are missing out. You can have this peace too. Again, this is a winning situation for me. Even if things don't go well, I have eternity to look forward to.
We drove to New Ulm which is a few hours away. I couldn't get the delicious Hungarian Mushroom soup,that I had last time there, out of my mind. They weren't serving it today! Oh the disappointment. When I get home I will be going to Vagabond Blues to have a big bowl and a hunk of bread. Food is finally sounding good. Some foods anyway. Patrick and I took a walk by the river. It is very hot and I can't take much of the sun. I feel drained. Good, but tired.
What a great day. I finally started organizing paperwork that I have piled up for three months. I still have more to do, but made great progress. I also started packing for home! I am praying everything fits in our car. I did some exercising and walked 1.5 miles. I even did the dishes tonight. I honestly feel normal. The only time now I don't feel normal is when I try and walk long distances and climb stairs. I hardly nap at all anymore.
I met with the infectious disease guy today about the virus. I have to wait for one more negative test before I can go to one IV infusion per day. That's okay. I would rather be slow and cautious than rush into it and it comes back. I have certainly learned patience.
Day 82/18 August 4, 2015
The road traveled has been long and difficult. As I am approaching my tenth month since diagnosis, I can say that with God's help and the support of my family and friends, by the grace of God, we killed Leuk. I don't believe he is lying dormant waiting to pounce again. I believe he is dead.
I knew from the beginning that my attitude would be crucial to survival. When I was told I had a rare form of leukemia, I was calm and ready to slay the intruder. I knew if I fell apart my family would too. I refuse to put them through anything harder than its already been. Attitude is a choice. I can continue to strive for good health because I have the strength of the almighty one.
I don't know what the future holds for me. But my eye is on the sparrow and I know he watches me.
I talked the nurse and nurse practitioner into letting me do the Day 100 tests before Day 100. I have my 8th bone marrow biopsy on Thursday followed by testing all next week. I decided to go out on a limb and buy my ticket for home before getting results. I just looked at my labs and my virus is showing up again after last week's negative reading. I will admit I am discouraged. Two steps forward, one step back. I know I have to keep trusting him and have a positive attitude. I'm just so homesick.
Do you ever have days where you just can't get out of a funk? That's today for me. I decided not to even get dressed. I went back to sleep after my IV infusion and slept till 11. I was called from Mayo Clinic today telling me they couldn't verify I have insurance this month and would have to pay for tomorrow's bone marrow biopsy. We got that straightened out thankfully. Then we hired someone to do an air quality control test in our home which cost us $1000. We are praying it's good and we don't have to do any work. Otherwise I won't even be able to stay in my home till its fixed.
Somedays are harder than others. This is the day. I have not lost my faith or trust in God. It's just a hard day. So many friends are very sick, so many I know are using drugs, and families are falling apart. Just a tough day.
I had my 8th bone marrow biopsy today. This is the second one I've done sedated. It's so much easier on me. However, he must have been really rough because I am super sore and it's hard to walk. But it's over. Full results will be back in about a week. They are doing extensive testing on it. They are looking for any signs of Leuk and making sure bone marrow is all French baby cells and none of my old marrow.
Tonight I am going to a special skin care class for people who have gone through a transplant and/or chemo. It's put on by the American Cancer Society. I'm excited to get out and meet some other women. So far I haven't had any major issues with my skin, but I have to be careful because GVHD can show up at anytime.
Oh my goodness I am getting so excited! Home in 10 days. Today I saw the nurse practitioner, did blood tests, and saw the cardiologist. Chemo did not damage my heart which is fantastic to of course. But my feet are purple and no doctor knows why. I am a strange one for sure.
Things are going great and I am enjoying my days. I try to appreciate everything about my days. I notice the pretty flowers, the beautiful trees, the people passing by, etc. I've decided I want to be like Andy Griffith in the town of Mayberry. No one would dream about passing another on the street without a greeting. But nowadays we avoid eye contact (usually because we are texting while walking) and don't even make an effort to say hi. It is so rude. I'm going to start saying hi. Maybe I will be the one bright light in someone's day. I want to make a difference.
Yesterday I walked over 2.5 miles, today packed 1.5 suitcases and have done nothing but lie around since. I see why Dr. Hogan wants me to take things slowly. I just don't have a lot of energy. It frustrates me since I'm used to being able to do so much at one time. But, I will get there again.
I am out of my funk. I was discouraged yesterday because I was so tired. Today I took a shower right after getting up. Yesterday I stayed in my pajamas all day. Patrick talked me into a road trip and we had a great time. We explored Pine Island a bit. Just getting out of the house helped. We stopped by the store and there was a little boy about four who pointed at me with a look of horror on his face. I know that won't get any better until I can stop wearing my mask. May as well get used to it and accept it. Kids are just curious. I understand.
Tomorrow we have a full day of doctor visits and various appointments. Hopefully a preliminary report will be back on my bone marrow aspiration, but I know the full report won't be ready till the end of the week. We are trusting God that all is good.
The waiting room is filed with probably 60 people ahead of me for labs. Waiting..... I've gotten good at it. Next up is a chest X-ray, followed by case manager appointment and doctor later this afternoon. I think there is one more appointment today too, but can't remember at the moment.
Home is 16 days away!
Great news!!!! Bone marrow biopsy came back clear. Leuk is dead! Plus chimerism test done on marrow still shows 100% donor. They can even tell which French baby took over my bone marrow. Praise God, Leuk is dead!
I spent a wonderful day reunited with two of my oldest Alaska friends, Dorothy and Amy. We enjoyed a nice lunch and a walk. Amy lives in northern MN now and Dorothy flew day for two days. It was so nice to have the three of us together again.
My virus is undetected again. Thank you, Jesus. The news just keeps getting better every day.
Trust me moment by moment. This is all I require of you, and it is sufficient to keep you standing firm in the midst of fierce spiritual battles. Just getting through each day is a victory as long as you stay in communication with me. Search for me in your moments. Keeping your focus on my presence is the best protection against self-pity and depression.
I am calling you to trust me in deep darkness. Take one step at a time, clinging to my hand for help and guidance. I am always near you and I know exactly how much you are struggling.
Though the battle is fierce and you are weak, your resources are unlimited. My spirit is ever ready to help you; you only have to ask. Remember that this Holy Helper is infinitely loving. I also am eager to help you. Call upon my name with confident trust, for my unfailing love surrounds you. (Jesus Today)
i needed this today. I will be home in 14 days. I am more than excited, but I admit I am nervous too. What if something comes up and I'm far away from the specialists? Will my local oncologist recognize it? Will I be spared from a fungal infection that took Logan? Will people understand I am immune suppressed and can't be around sick people or children who have had recent immunizations? Will they innocently expose me not knowing? Will I be stared at constantly because I have to wear a mask for months? Will my body ever grow back into all the loose skin left from losing 30 pounds? Will I look like me again? Will Leuk come back?
I trust you, Lord. Your will be done and you will see me through this. Give me the courage to resume the activities I desire to do in our community . Give me strength to get through each day. Please bless all my sick friends who are also fighting life threatening diseases and may also be anxious and scared. Help me be a blessing to others. Please bless my family who love me and support me and want me to live here on earth for years to come. Heaven will be incredible, but I believe you have more work for me here right now. Help me to trust and resist the fears. Guide my local doctor to recognize anything of concern. I love you, Lord and I thank you.
Today I woke up very nauseous. Yuck. I have learned that when I do a lot, the next day I pay for it. Yesterday I walked almost three miles and did my exercises and I guess it was just too much. I'm just not used to being physically limited. It reinforces what my doctor keeps telling me- this is a long recovery process. I intended to go right back to work full time and he wouldn't let me. I really understand now.
If only I had the energy of my parents! They are in their 70's and never stop. Hopefully I can keep up with them at some point, lol.
Yesterday I had several appointments at the clinic. All is looking really well. They are facilitating my transfer of medicines to Ak as well as coordinating with my Anchorage oncologist for my care. I am nervous. They keep reminding me I can always contact them here with concerns and of course I can always fly back. And I will be here every month for monitoring. I had a headache off and on all day yesterday. Still managed to get in three miles and some other exercises. Last night my blood sugar went low for the first time since May. I have been fighting the highs for months. The steroid just has my diabetes out to of control and it's frustrating. I have always been in really good control.
On Wednesday we had to say goodbye to Dorothy. After we dropped her off, we had lunch with Faith, David, and kids. Then we picked up my friend Rhonda. I love all the visits. Our friend Mark is coming to see us Sunday. We are blessed.
Rhonda left yesterday. I wish I had been feeling better while she was here. The nausea is more frequent again and I have been having headaches. It scares me a little because I'm so close to going home. I really enjoyed my time with her. I feel so loved by so many.
Ten days and I will be home! I have to deal with getting our well water tested. I just found that out. And the kids apartment above our garage may have been vandalized. The microwave and all the cabinets are off the walls. Lots got broken including the brand new stove we put in there. It's possible it was just "wall overeload", but it's been five years and why now? Kelsey said she felt really bad because this is the last thing I need. I told her after what I have been through the last year I can deal with this. I feel bad she had to clean it up since Casey is out of town and I feel bad Patrick has to replace everything.
But ending on a happy note, I am alive!
We had a great visit with our friend Mark and his two darling girls today. We drove to Albert Lea to meet up with them.
Wow, 5 more days to day 100! I woke up today nauseous, with a headache, and a sore throat. I decided to rest today as I had no appointments. I am feeling better. I asked for prayer and people obviously have been praying!
Tomorrow I will be asking my medical team about my well getting tested. They said I can't drink well water unless it's been tested. So many rules to keep me safe.....
Put your trust in me and I will keep you safe. There is a deep, deep yearning in your heart for safety and security. You can mask these longings for a time, but only for a time. These feelings actually serve a very good purpose. Properly used they can point you to me and my sufficiency. I am the only one who can ultimately keep you safe.
i dislike complaining, but yesterday on top of all other symptoms, I developed the worst case of indigestion, I tried five different t medicines over a couple hours and it finally subsided. I woke up at midnight and couldnot fall back to sleep till about 0300. Then woke up again and finally just got up about 0530.
i bought my plane ticket to come back here for my check up in September. Seems weird to already be planning a return, but I'm glad they will be closely monitoring me.
I planned to walk to the clinic today but it is pouring rain, I didn't exercise at all yesterday. I almost panic when I don't exercise. I know how important it is.
I believe I will see goodness in my life. I believe God has a plan for me. I believe I was diagnosed with leukemia to share my love for God to others. No, I don't believe we serve a cruel God who just puts calamities upon people to bring attention to him. But I DO believe he uses our calamities to bring attention to him so that we may share his great love to others. I don't believe God caused my leukemia, but he did know it would happen. From the very beginning I knew my reaction and attitude would be so important. I under estimated how many people my situation would touch.
I have a friend who I only met a few years ago. When she found out I lost my son, Logan, she came to me with tears streaming down her face and said, "F... God!" How can you believe in God if he killed your son. Oh did I ever pray before I responded. Many people have asked me how I have kept my faith all these years when God could have saved Logan. My faith is so strong I never felt anything but trust in him. I don't understand it and I don't like it. I do not understand why, but who am I to question God? When I was diagnosed with leukemia this same friend came to me and said, "Aren't you cursing God and saying F..lyou, God? Why you! You are one of the nicest people I know. Why did God do this to you?" I responded with " God didn't do this to me. But he will be with me every step of the way and I trust him."
This morning I was watching Joyce Meyer. She shared how unhappy she was her whole childhood because of the sexual and physical abuse she was subjected to by her father. She said she prayed everyday for God to deliver her from the situation, but he didn't. But he did bring her through it. And now she shares her story with others and brings them God's hope. She said if we believe and trust, God brings us into internal rest. She went on to say that you know God is going to do something and it's going to be right. God's got this and I'm going to believe.
Romans 15:13- May the God of hope fill you with all joy and peace as you trust in him,so that you may overflow with hope by he power of the Holy Spirit.
I have joy. I have hope. I believe. I accept my journey. I trust my God.
Oh the anticipation of the countdown! Last night I confess I was filled with anxiety. It just overwhelmed me. As excited as I am to come home, it's safe here. I'm protected from lots of people being around me and I'm close to the experts. My doctors don't have a lot of faith in the Alaska medical community as they are not experienced with transplants. I felt guilty for feeling anxious because I know God has this. But I promised you I would share my honest feelings and not sugar coat things. I am human and sometimes I give in to human feelings. But Patrick redirected me. I asked God to forgive my doubts and worries. I know how to keep myself safe and will do all I can do to protect myself. The rest is up to God.
This morning I woke up very sick and vomited three times before we got to the clinic. They hooked me up to IV fluids and IV anti-nausea meds. I feel better now. They are going to do an endoscopy in the morning to see if the GVHD worsened or if the virus invaded my gut. Hopefully neither! It's good this is happening while I am still here, rather than at home.
This morning I had an endoscopy scheduled at 0645. Patrick dropped me off and went to park the car. I wasn't feeling that great and was very tired. As I stood in line to check in I gazed longingly at the chairs wishing I could sit down. The lady behind me must be a mind reader because she offered to hold my place in line so I could sit. About ten minutes after I checked in she came over to me and said, "May I pray for you?" Of course I said yes. After she was finished I felt like weeping. I am overwhelmed with the amazing support and compassion from strangers, let alone family and friends. It's amazing.
My procedure went well. I had the nicest doctor and support staff. Afterwards I came home and slept for four hours. We just got back from seeing the nurse practitioner. It seems they saw a lot of inflammation in my gut and she mentioned I may not get to go home next week. The biopsy will be back probably Tuesday. I refuse to believe that It's that bad. I trust God to heal me.
Day 100/rest of my life
I've been waiting for this day and here it is. The magical day transplant patients look forward to. Day 100. With God's help, great doctors, and generous French parents, we did it. Patrick and I had been talking for a couple weeks about celebrating. Last night I mentioned finding a French restaurant. We hoped to have lunch with our friends Lisa and Jerry. Everyone I have been in contact with has been congratulating me. At the moment I don't feel very successful. Once again I woke up very nauseous. Doubts plague me. Am I really going to get better? Will the sickness ever stop? I ask God to help me remain positive and take the doubt away.
There has to be a lesson here that I'm missing. Things were going so well for awhile. I'm sorry for any discouragement my statements may make you feel. My faith is still strong, but the devil is just trying to beat me down. God and I will have the last laugh because he isn't going to win.
I will continue my blog in the next section, "The Journey Continues". Feel free to join me.
- Aug. 6, 2015