I’ve been busy.
The past 60+ days have been a roller coaster ride, for sure. So much was changing every day, so much time spent back and forth to NIH, so much time spent in the hospital, so much time resting. I’m not sure how to sum it all up (and still be profound and funny).
The benchmarks for my treatment are day 30/60/100. On these days, I get PET/CT and we evaluate my progress. I had my day 60 scans this past week and my tumor is stable – no new growth. Which is great news. We can’t evaluate whether the tumor itself is much ‘colder’ or less active than it has been in the past – although the scan seems to indicate that it should be. At this stage, still so close to my transplant, the important thing is that I’ve been off chemo for months now and the tumor isn’t growing.
These scans serve as benchmarks and data points for my treatment. Days 30/60/100 are arbitrary days where they collect information about how I’m doing. The actual time frame for showing results and achieving remission could take months or years. However, my new immune system is definitely fired up and I feel extremely confident that its doing what it is supposed to be doing.
A big indicator is that I developed a moderate level of Graft vs. Host Disease on my skin and in my guts (GI tract). The GVHD put me in the hospital for 2 weeks as I had to stop eating completely, go on bunch of support drugs, and go under the careful watch of my NIH team. Currently, I’m on a treatment plan of very high dose steroids (140mg/day of Prednisone) and Tacrolimus as an immuno-suppressant. It is working well and things are improving. But I can’t stay on this regimen for too long as these drugs inhibit the ability of my new immune system to battle my cancer.
Basically, it is a balancing act between not letting the new immune system run wild and overrun me with GVHD but also letting it do its work. The process takes as long as it takes to get my meds at the best level for this to work.
In the meantime, I’ve spent 35 days as inpatient through the last 60 days, including transplant days and 2 stints as inpatient. I can’t even begin to describe all of the daily ups-and-downs that I went through during these times. Complications with my PICC line/catheter kept me going back and forth to Interventional Radiology. Blood pressure spikes and drops. Lots of scans when there was any sign of possible infections or complications (none so far!). IV drugs. Oral drugs. Anti-fungals. Anti-virals. Steroids. Stomach medicine. The list goes on.
But this isn’t a complaint – more like a big thank you.
The care at NIH is far superior to anything I could have imagined. Part of it is being under a clinical trial – the rules are strict and they keep a very close eye on you. But NIH is so much more than that. The doctors really care about my progress because they care about their research and making people better. They earn less than private doctors, but give more attention to the patient. I can text my oncologist with questions. He’s got my back when I have personal run-ins with other doctors or staff. He’s protective and caring. And this attitude spreads through the entire team – from the nurse practitioners through the administration to the floor nurses. I’m surrounded by amazing people – people who know my case, know me personally, and do everything they can to accommodate me while pushing for the best results possible.
There is no insurance. There is no waiting. I’ve seen the dentist, ophthalmologist, interventional radiology, nutritionist, bronchial specialists, infectious disease doctor and more. My drug regimen keeps changing but we never have to pay for drugs. There is also a huge support system in place that provides acupuncture, massage and various therapies.
We are just blown away. I feel safe. We feel well taken care of. If I have to go inpatient, I know it is for the best reasons. And even if I’m bored or uncomfortable, if they tell me to stay inpatient then I listen. I’m not in any hurry to put myself at risk because I don’t want to be in the hospital – I let them make their evaluations and take their time.
This is a one way road. As it was explained to me – after an allo transplant, my baseline is changed forever. I may have to deal with chronic GVHD – sensitivity to the sun, dry eyes and mouth, skin rashes, or other things. It could pop up soon or it could be months away. I’m different inside. Forever.
But NIH will always follow me. I’m going to have to do some shuttling back and forth for awhile, but Bethesda is a nice town and I have a pretty good support system close by.
For now, I’m riding out the GVHD and getting my diet back on track. Treating the skin. Resting but I have enough freedom to make small trips out. The fatigue is impressive, to say the least. But I pace myself and I’m working to get my strength back.
This has been quite a journey. I was very sick when I arrived here while recovering from my IGEV chemo. Jen and I have crossed many bridges and there”s many more to come.
But I’ve got confidence and patience.
And I’ll be in touch.