Chugging Along....

It’s been a little while since I’ve updated….not much going on! I am at day 150 post transplant and still feeling awesome. I go into the clinic every 10 or so days to get my counts checked, then if everything is good (which it has been) I go home! No more staying in the clinic for 3 or more hours every visit. My counts fluctuate all of the time…actually everyone’s does, but when you aren’t getting your blood checked frequently you don’t realize it. My white blood cells fluctuate between the normal and low range….they probably will for a while until my bone marrow completely recovers. My platelets have been staying in the normal range, but I’m still bruising a lot and I think it may be related to the medications. I always forget to ask when I’m at the office. And my hematocrit has been low and probably won’t be normal for a long time. But it’s not affecting my energy level all that much. I feel pretty normal these days, besides the skin GVHD that seems to come and go….but overall back to normal.

In my last post I talked about how my skin GVHD flared up and they had planned to start tapering me off my immunosuppressant but had to hold off because of the GVHD. Well my skin is finally under control, although it is still sensitive and I will get little rashes here and there. So they decided to go ahead with my taper! It’s exciting, because it means I will be off of the drug by the end of July (if all goes well) and able to start going out in public (yay!), but I’m also not getting overly excited because if my GVHD flares up again, I am right back on it. The immunosuppressant helps to control and prevent GVHD because it makes my immune system so weak that it can’t attack anything it doesn’t know….like my skin, gut, etc. So once the dose decreases, my immune system becomes stronger so it is able to attack those things foreign to it. But the whole idea is for the immune system to be adapted to the new environment by the time you taper so there is no attacking of my organs going on. But sometimes it takes more time that others for those cells to become adapted and when it’s too early, that’s when the GVHD flares up. Luckily I’m only experiencing skin, but it can attack other organs like the liver, gut (which I experienced early on), eyes, mouth, lungs (not good), and some others I can’t remember. I had my first drop in dosage yesterday, and so far so good.

One thing that has been kind of big news around here is I started working from home at the beginning of the month! What a great God we serve. Going into this I didn’t think I would have a job by the end of it. I thought they would have to replace my position because of being out so long. I am incredibly blessed to be part of such an amazing organization and team that graciously took over my duties while I was out, continually sent me cards and gifts, and most importantly held my position. I know many people who go through transplant lose their jobs since it’s such a long process, so I am more than thankful.

It’s nice to have life getting back to normal. Family is gone, so it’s just the 3 of us again. As I look back I remember the dread, heartache, disappointment and sadness I felt when I heard the words “relapse.” It was so painful, and I couldn’t even imagine having to go through everything again, plus more since I would have to undergo a transplant. I also knew it was a possibility the cancer could take my life. I had a baby who needed her mommy, and a husband who didn't deserve to raise our child by himself. As I got admitted to the hospital, and watched Londynn leave because she wasn't allowed on the floor was an awful feeling. It was THE WORST moment of my life. I felt helpless and hopeless. I didn’t understand why it was happening again, and to me. It’s a hard pill to swallow…almost impossible to believe. But then I remembered that I wasn’t alone. Not only did I have my amazingly supportive family but had our Lord and Savior Jesus Christ to heal and bring me through it. My heavy heart was at ease when I remembered that. I see God working in my life constantly…it’s almost scary. I have seen so many miracles, and things that are not just coincidence. It’s God’s work, and it’s the greatest feeling to know that He is there and good.

My friend (met in clinic) is about a month behind me in the process and was battling lymphoma and had a relapse right before she was going to get her transplant. So they had to treat her again to knock her into remission before attempting a transplant again. She ended up getting a cord blood transplant just like me, so we have been able to connect since we are going through most of the same things. She told me that she fears another relapse and just can’t imagine going through all of this again. I am the same way but I told her she can’t live her life in fear. As cancer patients we will never feel that we are out of the woods even when we are 20 years out. There is always a chance of the cancer returning. I think any cancer patient you speak to will tell you the same thing. Until cancer has a cure, there is no 100%. But for me, I turn to God and leave everything to him. It brings me such peace knowing we serve such an awesome God!