Another Day

As always it is late and I have decided to update which always takes longer than I think, thus depriving me of more sleep, which I feel I don't need but, I know I do. Today I did many things, but, felt like I got nothing done. Nick had a sore throat this morning. In any normal circumstance, a sore throat would be a small blip on the illness continuum. For Nick....not so anymore. Upon inspection, we discovered yucky white thingy-whozits in there. Called IPOP...doctor told us to wait and see what develops. It is most likely a cold virus, but, that can still be bad for someone with a completely compromised immune system. I hope whatever it is can be nipped in the bud. Time will tell.

In general Nick has been doing very well and moving forward at what seems to me to be a very rapid pace. While all signs point to good right now, the problem with leukemia, chemotherapy and bone marrow transplants is the unpredictable nature of its many side effects and complications. Due to the nature of the beast, it is extremely hard to plan anything ahead as one never knows from moment to moment when some new glitch in the works may appear. On the positive side:
1) Nick's counts have been steadily rising, which is a good thing. He has not needed any platlet or blood transfusions as both of the numbers have been solid. Nick's white count and neutrophil count also are also rising, so his new marrow is trying to do its job.
2) Nick's days in IPOP are numbered because he is doing so well, he will soon be "discharged" down to the clinic level. This means that the level of care and monitoring Nick needs has decreased and therefore he is ready to move on to the next step in the process.
This also has a downside...see "downside" discussion to follow.
3) Nick will be getting his "60-day" bone marrow biopsy this week. This is a somewhat unpleasant procedure that all BMT patients must have throughout there recovery. This will be Nick's second bone marrow biopsy, but, this time he will have sedation! Then we will have to wait to find out the results for a week or so.
4) If all goes well, Nick may also be able to get his line out at the end of next week!! This is also a mixed blessing, but, the biggest positive is that the infection risk from the line will be eliminated.
5) Nick's appetite is good and the nausea and vomiting thing seems to have taken a hike! Now hopefully, if I can get him to just eat full time for a few months, he can gain back all the weight he has lost! Taste buds are still somewhat messed up but we are figuring it out slowly but surely, what tastes good and what doesn't.
6) Nick is off the majority of the medicines he was taking which is great! The less stuff to muddy the water and make his liver work overtime the better!
Now for the "things that are still of concern" list:
1) According to the nurse who did the "discharge" teaching, Nick's immune system is like that of a newborn baby. He must remain super vigilant to keep from getting sick! His new immune system though better (i.e. counts are slowly climbing) is not by any means at full capacity. Basically his force field is very weak and easily penetrated by all manner of bacteria, viruses and fungi. All of the protection provided by his immunizations have been wiped out. He will have to get all new shots at the one year mark. In the meanwhile, he can get chicken pox and measles just to name a few. With cold and flu season about to start, this is all the more reason that Nick needs to maintain a low profile and minimize his exposure risk.
2) Nick has to stay out of the sun as any exposure to the sun may trigger graft vs. host disease of his skin, which can be a very bad thing.
3) At the 60 day mark is when signs of chronic graft vs. host disease can begin to appear. GVHD as it is called can range from mild to severe. It is basically what happens when the donor cells start to attack the hosts body thinking it is foreign (because to the donor's cells, Nick is foreign!)
I pray to God that Nick does not get this as it can be very serious and can attack many different systems/organs of his body like the skin, the GI tract, the liver, the heart and more. The treatment for GVHD is also not pleasant and involves lots of steroids and sometimes anti-rejection drugs, which come with their own set of side effects and complications. Always with the side effects and complications. GVHD is one of my BIGGEST fears right now.
4) The leaving of the IPOP has a downside to me in that Nick will no longer be getting the close follow-up that he was getting in the IPOP (which on some days was also debatable even in IPOP) When you get busted down to the "clinic" you are considered to be outpatient. Nick will no longer be followed by the BMT attending or anyone in IPOP for that matter. He will then revert back to Dr. Fazi and Dr. Caramel, who are medical oncology doctors. We like both of these doctors, but, Nick won't be seeing them as often, which is a good thing as long as Nick is doing well.
5) Once the line is out, Nick will have to get stuck for all of his lab draws and treatments when needed. Hopefully, only once a week and then once every two weeks for a while then ??
6) Nick's liver enzymes were still slightly elevated, so I am hoping these numbers come down this week.
7) Nick had to start back on his Gleevac, which is the "targeted-therapy" medicine for the CML that keeps the Philadelphia chromosome from rearing its ugly troll head. Unfortunately, the Gleevac is strong stuff that causes hair loss and counts to drop and may also trigger GVHD! The doctors were just back from some conference and the new thing is to start patients back on the Gleevac as soon as their counts return, so they wanted Nick on it right away. Now we have to wait and see how this will fit into the picture. Another question, why the urgency to get him back on it? What is the new data?
8) There were rumblings about other tests that shall remain nameless right now as Nick does not want to ever have this test again. Therefore, not even going to discuss it now.

And I haven't even begun to address the emotional and psychological issues that go along with all this. I found a very interesting article about just this subject as it pertained to BMT patients and their caregivers right in the magazine pile at the IPOP the other day! I will save that for another post as this one is way too long already!

I guess I just want everyone to understand that there is a long, long, long, way to go and many obstacles yet to be moved before this is over. (Ganesha do you read me?) Nick really needs to have the continued support of all his friends and family. Of course, this gets back into the emotional stuff once again, but, now is when this really comes into play. The social isolation and the restrictions due to concerns regarding infection are really tough on Nick (or at least that is my opinion). Now more than ever Nick needs his friends to stay in touch so he doesn't feel like he is out of the loop with all of his peers and friends anymore than necessary.

How difficult it must be to feel like everyone you know is moving on with their life. They are busy working and doing what normal twenty-somethings do, while Nick is stuck dealing with quite a severe illness. So please keep emailing, face booking, writing, calling and VISITING! It is OK for adults to visit as long as you are not sick and/or you haven't been recently exposed to someone who has been sick. Flu shots are strongly urged for anyone who will be around Nick on a regular basis...we all have to get ours! Sorry that this post has been so long and drawn out and completely lacking in creativity. I am just too tired to be creative right now.

A good laugh and a long sleep are the best cures in the doctor's book. ~Irish Proverb

How do people go to sleep? I'm afraid I've lost the knack. I might try busting myself smartly over the temple with the night-light. I might repeat to myself, slowly and soothingly, a list of quotations beautiful from minds profound; if I can remember any of the damn things. ~Dorothy Parker