100 Days!... But Who's Counting?

Today is the “magical” Day 100 & is considered to be a significant milestone by the doctors so I figured that I should acknowledge it here. It’s mentioned a lot & some of you might wonder what is so special about it.  At this point doctors can tell so much more about how you're bouncing back from the worst effects of the transplant & how your immune system is building back up, and can breathe a sigh of relief, so to speak, if all is going well. It’s typically the point at which the doctors allow some really back-to-normal living to take place.

One-hundred days ago, Ray & I were sitting in isolation in the Bone Marrow Transplant ward, anxious but full of anticipation about the journey ahead. Ray had completed his five days of intense chemo that had primed his bone marrow for the new donor’s stem cells. The infusion was quick and simple and uneventful, but the procedure was potentially life-saving. Sitting there on day zero, Day 100 felt like an elusive dream yet now it’s here!

Yes, Day 100 is what every bone marrow transplant patient is striving for because ideally on this day they are set free from the hospital regimen of weekly blood tests, check-ups and scans. It means they have got through the 'danger period' and on their way to recovery and independence. It is the day they walk out of the hospital and get on with their lives. Today Ray is indeed breathing a little easier. Yet while he is no longer in the hospital, he continues being monitored closely with on-going blood tests & check-ups. We learned that although his white blood count is good now, although it continues to fluctuate whenever medicines are adjusted, we still must take reasonable precautions to keep him from picking up germs that would cause him to become ill because he will be on immune suppressant meds for at least a year or more to prevent his body from possibly rejecting the donor cells.

We knew that at 100 days there would not be some magical snap of the fingers and everything would be back to normal, as if Ray hadn’t even been through the process. He still has days when out of the blue his body will surprise him with some new little ache or pain. Just yesterday his foot started bothering him causing him to limp slightly, we noticed a few new odd looking spots on his arm & he had some chest discomfort that kept coming & going. That will probably pass & by tomorrow it may be something else. The truth is that this is an on-going process and there could still be transplant concerns a year from now.

Where is Ray today? First & foremost; Ray’s MDS (cancer) is GONE! They tell us that the further away he is from the transplant date & the bone marrow biopsies every 3 months continue to show no evidence of MDS, the greater chance that it won’t show it’s ugly face ever again & he can consider himself  CURED.

Now his body must recover from the process it took to make that happen. Because he did experience some GVHD (Graft Versus Host Disease) & was put on a large dose of steroids that seems to have cleared it up, he now must be slowly weaned off those steroids. In the meantime there are a few side-effects from that but we’re dealing with them. Lately his creatinine levels (which indicates a potential problem with his kidneys) are too high. Therefore he must drink tons of fluids each day to flush his kidneys in an attempt to keep the levels at an acceptable range. I was taught how to administer daily IV fluids at home. It takes 6 hours a day to pump those fluids into him. I’m grateful that we were able to do this at home because it sure beat spending each day at the hospital. His goal each day is to drink 100 ounces of fluid so that he doesn’t have to continue with the IVs.

Ray still needs all those baby vaccinations to protect himself because the transplant wiped out what he had. He received his 1^st vaccination last week. We continue to visit the hospital weekly for his labs as the doctor continues to monitor things. It’s vital that they head off any problems if they arise before they do serious damage. Ray’s appetite is getting better & his ability to eat has improved although for some reason he is losing weight, down 25 pounds from when he began this journey. He has lost a lot of muscle & is working on getting his strength back now by exercising a little each day. He’s still taking a boatload of pills every day, mostly as preventative measures for conditions that he is now more susceptible to contracting such as pneumonia, skin fungus, shingles, liver problems, etc. They are now beginning to discontinue a few of those meds.

Is life back to normal? Well, our life has a “New Normal” now & even that is still trying to define itself. There are lots of things we approach differently now; eating more healthy & avoiding certain food establishments, a higher level of cleanliness (sanitizing & disinfecting things we never really worried about before), avoiding exposure to sunlight as much as possible (it can activate the GVHD), etc.  We are grateful for where Ray is now compared to where he was three months ago. Going through something like this will certainly cause one to look at life & re-evaluate what is & isn’t important. Each day is a gift.

Ray’s Day 100 as a milestone is uneventfully over, but this just means he gets to create another. We’ve learned that things often don't go as planned. Our journey is like sitting on a raft being pushed down a river, and we simply have to go where the river takes us. If we hit rapids, there is no sense in fighting, we simply have to ride it out and have faith that Ray is going to get out the other side. Notice that I say “we” because it is indeed a journey we are taking together. Ray is steering this canoe & I am his rudder that guides him as best I can.

So, we do hereby acknowledge the 100 days as a milestone, as the journey continues…