I’ve been home for over a week now and have settled into a routine. Unfortunately that routine can be a bit monotonous at times, but at least it’s at home. To prepare for my home coming Lindsey cleaned and sanitized everything in the house. Our bedroom is a safe zone for me and the kids aren’t allowed to go in there. When the kids come back from pre-school or anywhere out and about they have to wash their hands. They’ve picked that habit up pretty well and will hold their hands up to my nose to smell the soap so I know they are clean. Every now and then Sydney collapses to the floor with an “I’m too tired to wash my hands!” But eventually she gives in.
I’ve been a lot more tired at home than I thought I would be. I think part of that is the stimulation of 3 kids plus stairs. Those damn stairs. You could set $1,000 at the top of the stairs and depending on how I was doing, I might just pass it by. Slowly but surely though I’m gaining strength back. I do feel better today than I did yesterday, and here’s to hoping that trend continues.
My Immune System
My counts are coming up nicely, but the problem is my new cells have never dealt with a virus or bacteria. Remember, it’s just like being a newborn baby. Because of this, I have to wear a special mask if I go out in public. Right now the only public I go out into is the clinic for lab draws and checkups. There’s too much risk in picking something up that my body doesn’t know how to fight off yet. At my next appointment I’m going to ask about immunization schedules. Not sure if I start immunizations at a specified day or if it just depends on how I’m doing.
How I’m Doing
Overall I’m doing good. My stomach is the biggest issue. It’s upset a lot and while I’ve managed to keep things down on the north end, they flow out rather quickly on the south end. Thankfully Imodium seems to control that issue. I still take anti-nausea meds to try and help. Sometimes they do help and sometimes I’m squirming on the couch to find a comfortable position. I also seem to be colder than I used to be. Previously I could walk around the house in shorts and a t-shirt and be just fine. Now I wrap myself up in a blanket, have the fire going and even turned the heat up. It will be interestng to see how long these differences last or if they become the new norm. It will take months or more for my body to figure out how it wants to act.
What’s Up Doc
I saw Dr. Nelson on Monday. This was my first time seeing him since before transplant. Overall he was very pleased with my current state. He said I’m probably in the top 5% of patients as far as how well I’m doing. He asked me if I’m an exercise buff which drew an audible laugh from Lindsey. I may not work out, but I guess my young body can bounce back better than some. At this point I should be going to clinic twice a week. Once to see Dr. Nelson and once for lab draw only. However since my counts are up and everything but my magnesium is in range, Dr. Nelson said I could just see him next Monday. That means only 1 visit this week! As for my magnesium it was only slightly low. I’m now taking an oral pill to help with that.
Be Careful What You Ask For
To recap, the stem cells that were put into me is the Graft. I am the host. The main complication with transplant is Graft vs Host Disease (GVH) where Dom’s cells recognize my cells as foreign and begin to attack them. Some of the drugs I’m taking are to prevent GVH. GVH will most likely occur in the skin, gut or liver.
Now here’s the kicker…there is also the Graft vs Leukemia effect (GVL). Just like Dom’s cells may recognize my skin as foreign and attack it, the hope is Dom’s cells recognize any remaining leukemia cells and attack those. The problem being, we are suppressing Dom’s cells so they aren’t as likely to attack.
So during my conversation with Dr. Nelson on all of this I asked why we don’t induce GVH. His answer was quite simply “because people die from it”. Of course people die from relapsed leukemia as well, just not as quickly. So the balancing act that Dr. Nelson will carry out over the next few months is to decrease my meds that suppress Dom’s cells but not so much that it kills me. He thinks I will have some GVH. It’s odd because I want GVH to wipe away any remaining cells, but at the same time I don’t want it to kill me. As Dr. Nelson said, be careful what you ask for.
Right now life will look the same for the next few months. Rest, drink plenty of water, eat the right foods, and increase activity as tolerated. I’ll probably be a shut in for most of the winter. Maybe that will change once I start to get immunizations. And obviously, I’ll travel to clinic for checkups. It’s a little weird to think of recovery in months instead of weeks. Today I was reading a few stories where people were talking years and not months. I do have my age on my side and I’m a stubborn SOB, so hopefully I can stay in the top 5% and be better sooner.
A Duck Dynasty Prayer
You give me each day as a gift. What I do with it is my choice. May the choices I make and how I spend my time honor you God. It’s hard to get up and do things. It’s hard to lay down and do nothing. Help me to find a balance. Something that will pass the time and enrich me. I thank you God for getting me to this point. Let’s continue on this journey together. Thank you for another day.