It is what it is!

I follow a blog called "A Pastor's Cancer Diary" about Carl Wilton, a pastor in a church in Pt. Pleasant, NJ who has lymphoma.  I really connected with his latest post:

“It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.

One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.

Yes, it is what it is. And, sometimes, it can even be beautiful...

Making this journey can be such a contradiction at times. The weeks of waiting for test results seem to go on forever. Forward progress is nonexistent.  Yet, at the same time, it feels like our life is built on a pillar of sand, shifting and changing every day. Some days I barely recall Kevin has leukemia; other days that knowledge nearly pulls me under. But from the beginning, Kevin and I, like many other cancer patients, have repeated our mantra: "It is what it is." Far from being defeatist, we know we are doing everything we can to help him beat his leukemia and there is comfort in believing it. And, amazingly, your brain allows you to adapt, to cope, and to get through your day in one piece. 

We finally heard from Hopkins yesterday about the bone marrow comparison test. Unfortunately, the second bone marrow sample (from January) was "compromised" and they were unable to get any results from it. So, they are unable to provide us any guidance about how we should proceed at this point.  The doctors at Hopkins would like to perform their own bone marrow biopsy on Kevin, believing they can better control the quality of the sample. Also, they want to run additional tests to look for any evidence of lurking leukemia. This is so key for making Kevin's treatment choice: if they can't find any leukemia, then he may not even need a transplant.  If they can find leukemia, he may need a more intense type of transplant then the haploidentical.

If your head is spinning too, join the club! The layers of complications in making a treatment decision keep getting thicker and thicker. Contradicting opinions from doctors, new diagnostic tests with results no one knows how to interpret, and terribly limited data about Kevin's disease all add up to one big headache! I consider myself fairly competent in digesting the medical aspects of Kevin's disease, but I must admit, it's getting more challenging to make my way through this dark tunnel of uncertainty. 

So, here's how we hope to proceed.  I am doing my best to push for a bone marrow biopsy for Monday at Hopkins.  I don't want to waste any time waiting (the results will take about 2 weeks). If we can't get in for Monday, we'll have to wait at least 2 more weeks because Kevin has restarted his chemotherapy this week.  They will not do the biopsy until he completes the 2 week course AND his blood counts recover.  The thought of waiting 5 weeks for this result is too much! 

Kevin is finishing up Phase 4 of the 5 phases of the chemotherapy regimen.  He has 4 days of treatment for 2 weeks.  He travels to New Brunswick 4 days a week for chemo injections and takes oral drugs every day.  After this phase is complete, he will begin the 1 1/2 years of maintenance chemo: oral drugs every day and an IV once a month. That's likely to change though...

Kevin's 4 haploindentical siblings have completed their blood testing this week, so we'll wait about 2 weeks to hear who is the best match.  Lots of love and thanks to Greg, Wayne, Denise, and Keith for taking care of their baby brother!