Monday, October 29, 2012

A little stressed out!

Well, I've spent quite a bit of time and the BMT clinic this past week. Last Tuesday I noticed that I was feeling more tired than I had been. Also I felt that small activities left me short of breath and my heart racing. Then on Wednesday I began to have chest pains right around my sternum. To top it off I began to have some stomach pains and I noticed that on my right shoulder where I had a blood clot last April, the blue veins in the area were more pronounced. So I immediately called the clinic and they told me to come right in. Marc and I drove down with an overnight bag just incase. When we got there they did numerous blood tests, and a CT of my lungs, heart, and the veins in my chest and shoulders. The CT came back showing that everything was normal "for me" The pock marks on my lungs were healing, my heart was it's normal size, and there were no clots to be seen. All my blood tests came back normal as well, Infact my hemoglobin even went up a little on it's own! My Doctor was out of the office that day so his PA and nurse were the ones taking care of me. They were stumped. They concluded that since they had ruled out anything serious that I could go home and call them if my symptoms got worse. They are so patient and caring! The next morning they even called to check on me.  Well, my symptoms didn't get worse but they definitely persisted. So today when I went down for my weekly appointment I got to see my actual doctor this time. He came in and said "looking at your labs, I am very pleased with how you are doing, but I am worried because you are worried!" I explained all of my symptoms. We did a few more test, EKG, an ultrasound of the veins in my shoulder and chest, a complete physical and more blood tests. Everything came back as normal as they could be under my circumstances. My doctor then told me his theory. He asked me if I am worried about anything. I told him that of course I am! next Monday they will be doing my 100 day tests including a bone marrow biopsy. If the results aren't good, then everything will immediately change in a very bad way! He say's that he thinks I am having a ongoing panic attack. He pointed out that only 2 weeks ago they stopped one of my antidepressants (yes, I said one...) and the day before the symptoms began I was at clinic, saw that my hemoglobin had dropped a whole point, and I was given the schedule for my testing next monday. He said that it is actually proven that in Lymphoma patients about a week and a half before they have a scan done to see if they are still in remission, they experience alot of the same symptoms I am having including shortness of breath, and chest pain. It seems so strange that my body could be responsible for so much without me even realizing I was that stressed! He wants to wait until we get the results from my tests next week, and when we see that they are good my symptoms should dissipate.  He is however still stumped about the blood clot. But he assured me that when all my tests come back good next week, and if I am still holding onto my hemoglobin, then he wants to get my central line taken out. He said that will eliminate the threat of more blood clots, and lower my risk of infection dramatically. He said that 2/3 of people who are going to come out of remission do it during the first year after transplant. The second most common time is the first 100 days after transplant, then the second year after transplant. After the second year the odds of it coming back are less than 2%. So he said that it's a very good sign that I made it through my 100 days still being 100% in remission and no graft vs host.  They all admitted that I am doing much better than they expected me to do. In leukemia they don't have "stages" they mostly just go on the genetic make up of the cells and if it is full blown leukemia. So if they had stages, I would have been stage 4. Put my two failed transplants on top of that, plus the extra chemo and radiation, and apparently they didn't have very high expectation of how I would do. (glad they didn't tell me that at the time!) So that made me feel better that I am doing better than they even thought I would.. I made it past another hurdle! I would really appreciate it if you all would be willing to say a prayer for me this Sunday, that I will still be in remission and all the tests go well. Until then I will try to do more yoga, and take some xanax!

Thursday, October 18, 2012

Lessons Learned

When most people hear about someone being diagnosed with Leukemia I think most of them wonder "how long do the doctors think they'll last" or something close to that. I have to admit that I used to think the same thing. Strangly when I was diagnosed I immediately felt that I was going to be ok. That doesn't mean that I haven't been terrified every single day for the past 11 months. But deap in my heart I have believed that I was going to make it. I don't know if I'm even at the half way point, but I do know that I've lasted longer than most. I don't know why. I've wondered if God is preparing me for something bigger?  Maybe, mabye not. But I do know that in this relatively short time I have learned alot. I have learned that you can feel lonely in a room full of people. That most people are good, and caring.  That there really is a reason we pay for health insurance :)  I've learned that God hears every sincere prayer. He usually answers them through other people. On seemingly small example of this took place last January. I was in the hospital recieving more chemo. For some reason I was going to be alone that night, which has been a rarity. Around 10 o'clock I began to feel terrified, hopeless and very alone. I said  a short prayer asking for help. It turns out that one of my friends from church happened to be at the hospital at that very time bringing something that her husband that worked as a doctor there had forgotten at home. After she delivered it to him she had a strong impression to come visit me. At first she hesitated thinking that it was late and I was probably asleep. But the prompting came again so she went back to the elevator. She knocked on my door and slowly opened it to find me sitting in bed crying like a basket case! She came and sat by me and talked with me until I felt calm and peace again. I knew then that God really hears me.
I've learned that even through immense physical pain, the emotional pain is far worse, and lasts much longer. I've learned how many people love me, and really would do anything for me. I've learned what drug dependency and withdrawls feel like. They are much worse than I ever thought. I've learned what it feels like to have everyone you pass stare at you because of your appearance and wonder what is wrong with you. I've learned that while a beutiful house and a fashionable wardrobe would be nice, all I really need to feel happy is a loving Heavenly Father and my family.
I'm sure if I thought some more that I would come up with many more things I have learned. I hope that because of this I can be a better, more compassionate person. I hope I get the chance to try and help others. And really make a difference.

Wednesday, October 10, 2012

I am blessed!

I just have to express how blessed I am. This sunday it will be 80 day's since my transplant. That not only means that I have been home with my family for 80 days, but I haven't gotten a dangerous infection or graft vs host disease. Now I'm not saying that there won't be difficult times in the future, this still could be a very long road. But I cherish each and every day that I have. Today I walked three blocks to the park with the kids, and back home again. I know that doesn't sound like much, but it's alot for me! I am able to live in a house with my little family and take care of them, and Marc is getting some hours at a local pharmacy. It probably sounds so basic to everyone else, but to me it's a miracle and a blessing. There were times when I really thought I would never have this. Hopefully things will keep getting better. When I hit 100 days they will start to taper me off the immune suppressants. That means that I won't have to worry as much about getting a dangerous infection, and hopefully I can become transfusion independent. At that time they will also run just about every test possible to get an idea of my general heath, along with a bone marrow biopsy. I know that I will be scared every day for the rest of my life that it will come back, but especially when I get a bone marrow biopsy done. Because I know that if it's back my life will immediately change, and my treatment will become much more challenging. I still get worried to hope for the future, but I can't help but imagine what this holiday season will be like home with my family. Last year I had thanksgiving in the family waiting room of the hospital, and christmas sitting in the lobby with my dad looking out at downtown Birmingham, almost deserted with everyone home with their families. I pray that this year I will get to be home with my loved ones. I would also like to ask for prayers that an amazing women will get to be home with her babies as well. Her name is Kari. She had a bone marrow transplant this summer as well and is currently in the hospital with some complications including some leukemic cells coming back. Please pray for her and her family. I know that when people come together for one cause and ask God for a miracle that amazing things can happen. Thank you for all your love and support!

Wednesday, October 3, 2012

Latest appointment

It has been a crazy week! We are moved into a house! Not all the boxes are unpacked but thanks to some great friends and family all the essentials are in place! The frustrating part is that Conner has been sick since Monday and unable to live with us. He came down with a terrible cough, his voice was hoarse, he had a headache and body aches. His cousin that he goes to school with had the same symptoms so my sister was nice enough to let him stay at her house. This morning she said the kids were doing ok and asked if I wanted to meet them at the park with Brayden. When we got to the park Conner began playing on the toys and running around. After just a few minutes he ran over to me. He looked scared and was wheezing with every breath. You could tell that he needed to cough but he couldn't get enough air to cough. I immediately put the boys in the van and drove to the hospital. (with a very good mask on!) By the time we got there he had calmed down and was breathing a little better, but still wheezing. They did a chest x-ray and it came back normal. The doctor took a look at him and said it looks like he has bacterial bronchitis. They gave him a prescription for antibiotics and steroids and sent us on our way! I was so sad that i still couldn't take him home. My parents were good enough to take him for the rest of the day and night. Now I am watching Brayden like a hawk for any signs that he's getting sick too!
At my doctors appointment this week we got some good news and some bad news. The good news is that my chest x-ray came back "much improved" from the one I had a month ago! They said they can still see the pock marks where the fungus was, but it looks like the fungus is gone! The other good news is that my white cells have gone up a little, and my platelets took a pretty big leap! They are now in the normal range! The bad news is that my red blood cells and hemoglobin went  down quit a bit. They still think it might be drug induced. There are three drugs that could cause it but two are the anti rejection drugs that they can't start getting me off of for another month or so. The other is a drug that prevents pcp pneumonia (one you can only get with a compromised immune system, like the fungal pneumonia)  There is one other drug they could use for that, but it increases the QT wave in the heart which is something I've had trouble with in the past and is nothing to mess around with! So I hope my doctor can come up with something clever! If I could be transfusion independent then they might take out my central line! Hopefully things will just keep getting better. I just keep praying that tomorrow will be a little better than today!