Tuesday, September 25, 2012

Praying for hope

I think I may need to see a therapist. I've realized that I am terrified to hope.  Things are changing and I am scarred. Thanks to some good friends we will be moving into our own house. Just us four. Marc and the boys are excited. I am too, but I just can't get over this fear. I want to freeze time until the doctors tell me I'm all better and give me permission to move on with life. But I've realized that it doesn't matter how scarred I am, how sick I feel, or how tired I am. Life goes on. There will always be meals to cook, bedtime stories to read, and laundry to do.  I guess I don't have much choice in the matter. Partly I'm feeling discouraged because at my last appointment all my numbers had gone down. The doctor says that it's completely normal, and it will go up then down for a while. But I definately didn't want to see that. The other part that scarres me is my aspergillus (fungal pnemonia) I don't feel like it's getting any better. I'm coughing all the time and by the end of the day my lungs feel so tired. They are doing a CT scan on Monday to see if it's gotten better or worse. If it's worse there is only one other medication to treat it, but it only comes in IV form. Which means I would most likely have to be in the hospital to get it. The treatment lasts 3-6 months. There is no way I am going back there for that long!! I would appreciate some prayers if you all wouldn't mind. I am definately praying for another miracle.

While I was at my last appointment in the lab to get my weekly blood tests I noticed the lady in the chair next to me looked very sad and nervous. She had a full head of hair and was getting her blood taken through an IV instead of a line. So I knew she hadn't gone through chemo yet. In my efforts to get her talking I asked if she was preparing for a transplant (obviously she was since it was the BMT lab, but I still hate to assume). She looked at me, hesitated, then looked down and quietly said "um, yeah." I got the hint that she didn't want to talk about it. But it got me thinking. The reason Leukemia is so scary is because you never hear about the survivors. I don't blame them, obviously, just like this woman she just wanted to get it over with and never think about it again. Maybe they think that if they pretend it didn't happen then the pain will go away. I remember growing up that whenever I heard anything about Leukemia I had a feeling of foreboding. I didn't know why, but I instinctevely stayed as far away from it as I could. I didn't want to learn about it, I didn't want to hear about it. I guess I thought that somehow, caring would somehow give me the disease. I was wrong. Just because you ignore something doesn't make it go away. Infact, I feel like leukemia and all cancer survivors went through that specific challenge for a reason, and if they don't figure out that reason and learn as much as they can from it, then it's kindof like they suffered for nothing. If I have to go through this and fight this hard, then gosh dangit something good is going to come from it! Even if it's just hope for future patients.  I suppose that to give hope I need to have it myself. So that's where I will start. I need to shift my thinking from just getting through today, to what are the plans for next month? And next year?  So here I go! Jumping back into life with both feet.  Wish me luck!

Wednesday, September 12, 2012

Good News

I am 100% donor!!  I could hardly believe it when they told me. There's always the possibility that the leukemia could come back, but it's much less likely to happen if my new bone marrow was able to kill off all my cells.
Now my biggest challenge is to avoid an infection. I am at day 50, and around day 100 they will slowly take me off the immune suppressants and I won't have to worry as much! My immune system won't be nearly as strong as a healthy person until about a year out. That's about how long it takes for my body to create T-Lymphocyts. (Marc said they are like your navy seal of your immune system!)
This definately is a marathon and not a sprint! I am slowly getting used to living with my limitations, and learning to not worry about every little pain or cough. (although I have called the on call doctor a few times with some pretty stupid concerns!)
I am so glad we finally got some good news! Maybe now I can relax a little :)

Friday, September 7, 2012

From my perspective

I was like most little girls. I dreamt of one day marrying my prince who adored me, a doctor of course.  We would have 4 perfect children. Two boys and Two girls. We would live in a beautiful house that was roomy, but modest. I would earn a masters degree just in case I wanted to work when the kids were grown. But mostly I wanted to be a stay at home mom. I wanted my family to know just how much I loved them by always being there for them. We would have nightly scripture study, family home evening, and a year supply of food. Once the kids had all gone on missions or off to collage, then me and my prince would serve a mission. We would then visit every country we had ever wanted to see. Then, one night when we are in our 90's we would die in our bed holding hands. That was my plan. Not too much to ask for, right? I didn't ask to be rich, or famous. I worked really hard toward my goals. I married my prince who adores me. He is now a doctor :) We have two beautiful healthy little boys. Just as I was planning to have my two girls, something happened. Something that was never supposed to happen. It happened to other people, but not me. It wasn't in my plan and it wasn't acceptable. The doctor looked into my eye's and said "you have leukemia". My world was shattered. They wheeled me up to the dreaded 9th floor. The floor where people go up, but not a lot get out.  I kept thinking that I needed to go home and clean the house and make freezer meals, and pack a bag. There was so much to do. But they wouldn't let me. All day I had doctors coming into my room, poking and prodding me. Why couldn't they just leave me alone for a while so I could process what was happening to me? Then they would wheel me off for one test after another. Finally my doctor sat by my bed and told me that I had the most aggressive type of leukemia, and I had a 15-30% chance of survival. But what about my babies? They needed me. If I die now they won't even remember me.  What about my husband, we were supposed to die together! As a sat there trying to accept what I was being told, Marc brought the boys into say goodnight to me. My precious angels. I had never been away from them, and it felt like someone was taking half my heart and ripping it out. When it was time for them to go, my sweet Conner wrapped his arms around my neck and began to sob "mommy, come home with us! Let me stay with you mommy!" Marc had to pry him off my neck and I listened to him scream and sob as they walked down the hall and to the elevator. Every part of my being wanted to rip all the tubes out and jump out of the bed and chase after them. I wanted to pretend that this wasn't happening, maybe if I believed it enough, it would come true. There were days when I got lost in the "why me?" "what have I done to deserve this?" On one of those occasions I noticed a picture of christ on my wall. He had a tear rolling down his cheek.That tear was for me. He didn't want this anymore than I did. But to stop it would take from me and many others the opportunity to learn and grow. But he would help me. I knew that  for sure. There were many days where he carried me through.
The day after I was admitted my parents flew to Alabama on the first flight they could get. When I first told them over the phone they thought it was a joke. When I finally convinced them that it was true they were terrified. They said that once they got to my hospital room and saw me that there fear subsided and they knew everything would be ok.They and my in laws took turns staying at my house and taking care of my children. They were doing my job. That was supposed to be me. It was hard on Brayden too. He was very mean to grandma and would say "I don't like you, go home!" I think in his 3 year old mind that if grandma left, then mommy could come home. Marc spent every night in the hospital with me sleeping on a very uncomfortable chair. His patience and love was endless. They finally let me go home for 5 days for christmas. But when I walked into my house it wasn't mine anymore. Everything was different, especially me. Instead of the fun active mom that I was, I was suddenly the bald woman who was too sick and weak to do anything but sit on the couch all day. At first they were scarred of my bald head, but they grew used to it. I still haven't. I miss my beautiful hair. Without it I look like a strange alien that has my eyes. I avoid mirrors at all costs. After christmas it was back to the hospital for more chemo. This is how it went for the next 2 months. Finally we decided that we couldn't do things like they were anymore and we moved to Utah in my parents basement. That way my children would have stable people in their life that they loved. Plus all the help from family. My doctor recommended that we meet with the bone marrow transplant doctor to see if it was something we should do. What the doctor explained to us sounded to be a very scary, and long process. But without it I had about a 15% chance of survival, with it my odds went to 70%. That's a very big difference, I had to admit that.  I wanted to scream "no, I am done with chemo!" But instead I said a little prayer asking god what I should do. The though came to me "I will help you after you have done ALL that you can do". After the meeting I talked with my dad and Marc who had been there with me, and they received the same answer. We were doing this. They found me a perfect match donor much quicker than normal, and my insurance pulled through at the last minute. So on May 9th I was admitted to the BMT unit. For the first 7 day's I received very strong chemo that completely took out my bone marrow. There was no going back now. Then they put in the donor cells, and it was time to wait. Day 14, 17, 22, 26, still no signs of progress. A bone marrow biopsy showed that the donor cells were gone and my bone marrow was empty. How had that happened? The doctors had never seen that with a 10 our of 10 match. They were just as confused as I was. They had enough cells from the same donor to do a second transplant, but in the mean time they sent some of the cells out for testing. So I sat in my hospital room, day after day. Hearing all the fun things my kids were doing. And I was missing all of it. Once a week they got to visit me for 1 hour in the lobby if I wore a gown and mask. But the kids shied away from my appearance. They told me they loved me, but I could see in their faces that they were scarred to give their love to me, because they never knew when they would see me next, if ever. One day my sweet little Conner must have picked up something from a conversation because he came up to me and wrapped his little arms around my neck and whispered in my ear "mommy, your not going to give up, are you?" I promised him that I would never give up. That promise has gotten me though some very hard times when I wanted to give up. Like when I had total body radiation. Which was one of the worst procedures that I have ever had done. And on all those days sitting in that hospital room wondering if I was going to die here. To distract myself and to show my kids how much I loved them, I began to paint. Dinosaurs, Pirate ships, anything they asked for. I also began making paper dolls to take to the kids in the childrens BMT unit. Maybe it would cheer them up if I took them something fun and showed them that I didn't have hair either, but that I was ok. Maybe it would bring them hope. During my 100+ day stay in the hospital I was never alone. Either Marc, my mom, dad, or brother stayed with me. They spoon fed me when I didn't want to eat, gave me massages when my body hurt so bad that the narcotics didn't even help. They read to me, talked with me and tried so hard to cheer me up. After the second transplant failed it was pretty hard to cheer me up. I would just lay there staring at the sky imagining me picking up my family and driving as far away from this place as we could. Somewhere tropical. Somewhere where I wasn't sick. Somewhere that my kids didn't wonder if they would have a mommy tomorrow. I would love them and protect them the way I couldn't right now. The way a mom should.
Then the doctors told me that the results came back on the donor cells, and they were not viable. Basically dead. The good news is that it wasn't my body, it was the cells. The bad news was I had just wasted months of my life and needless chemo. They quickly found another donor for a third transplant. This last bit of chemo hit me so hard that I have nerve damage in my hands and jaw. It's pretty awesome to be in the middle of a sentence when your jaw starts to spasm. My platelets got so low that I had hemorrhages in both my eyes, leaving me partially blind. And my immune system was so low that I contracted fungal phenomena. Then right before transplant a bone marrow biopsy showed that there was a small amount of leukemia in my bone marrow that hadn't been there last month. After all the chemo and radiation I'd been through, that almost killed ME the stupid cancer was still there?! At least it confirmed that I made the right decision to do a bone marrow transplant. Without it we wouldn't have found the leukemia until it was full blown and I'd probably be dead right now. We went ahead with the third transplant. Marc sent me a recording of Brayden saying the nightly prayer and he asked God to help mommies bone marrow to work. It was a powerful prayer because by day 14 my ANC started to come up! 4 days later they kicked me out and said " be careful not to get an infection!" We went to a hotel close to the hospital. It felt so weird to be out of my hospital room. Marc took me to the new outdoor mall. I was bald, had a mask on and had to ride in a wheel chair I was so weak, but it was amazing to be free! That weekend the boys came to stay with us. We went swimming, went on a carriage ride, went to the park, and snuggled on the bed watching movies. It was wonderful! I had my family back! The day they had to back to grandma and grandpas Brayden said "mom, I don't want to go" I asked him why and he said "because I love you". I knew right then that nothing was going to keep me from being with my children again. At my next doctors appointment I mentioned it to my doctor and he encouraged me to go home and try to get back into a normal life, but to be very careful to not get sick. I was suddenly terrified to leave my safe bubble. I felt too fragile to be that far from the hospital! A part of me was also afraid of getting close to my kids again. What if they learned to trust that mom would be here and mom loved them.  And then I had to go back to the hospital. Or worse, if I died. That wouldn't be fair to them. Right after the appointment Marc packed our SUV full to the brim as fast as he could while I lay on the couch being useless. He got us packed and out of there in time for me to say goodnight to the boys. I feel like my life is in limbo. Marc is my caregiver so he can't apply for any jobs. I'm too weak to do much. We are doing a test next week to find out if the new bone marrow killed off the cancer or not. If it hasn't I will be taken off all immune suppressants in hopes that it will run ramped and kill the cancer!   If this doesn't work, there's not much more they can do for me. I just got my family back, I don't want to loose them again. My kids are so young, they need a mom. I can't imagine another women with my husband. We were meant for each other. Soul mates you could say. I have fought too hard and have to much at stake to loose the fight now. But I know that in the end it is Gods will that matters. I know that I would be just fine in heaven, looking down and watching my family grow up without me. But I choose to be here. I choose to work towards my dream again. And I'm not going to give up.

Saturday, September 1, 2012

Chemo Brain

I really hate what chemo has done to my brain. I used to be very organized, loved to plan, and remembered everything. Now I have a hard time remembering what I did last week, and I have no desire to plan ahead. Today we were emptying out some boxes from my hospital room and as we came across books/magazines/and other gifts, I had no idea where they came from. My mom would say "remember that so and so visited and brought you this". It may as well happened to another person because I have no memory of it! Now, if your reading this and you came to visit me please don't think you efforts were wasted! I know that at the time I was grateful to have people come see me.
Then my family began telling me about things that I said or did when I was hallucinating. I don't remember any of it! I wish they would have recorded me. We could have won America's funniest video! I really hope that over time I get my brain back. I miss being me!