Q & A, the Name Game, and Dancing into the New Normal

Today started out as one of those medically boring days, but at as the sun was setting, things got a bit exciting. I have made it a point to learn everyone’s name who comes into the room and takes care of me from those wearing white coats to the nurses and med techs to those who bring me my meals and empty the trash. I try to learn them all. Well, that good deed did not go unpunished today. While watching a DVD early this evening, a VA police officer opened the door and asked for me by name. Knowing who I am isn’t too terribly hard since I have a placard outside my door with my name emblazoned on it as well as a beautiful wrist band that I was warned I should shred when finished with it since it has my social security number on it. The officer asked me if I saw who it was who emptied the “sharps” bin today. My point in learning people’s names is to write a glowing letter of thanks to the VA for the wonderful care I’ve received since being here. Little did I imagine that the one who was emptying the trash was also salvaging the drugs out of the syringes and using or selling them.

My room is right next to the stairwell at the end of the hallway and most all of the medical staff comes in and leaves via those stairs and that’s how I found out that my remembering names was the key to quickly solving this problem. One of the techs came by and thanked me for positively identifying the person. Apparently this has been going on for some time and it doesn’t take a medical professional to tell you just how dangerous what this person was doing really is. I have to assume that this person is no longer employed, but may also be facing charges.

Maybe my good deed du jour was why there was a cookie on my food tray tonight. Nah, I bet everyone got one. Besides, the frequent fliers get the cookies when they arrive and they’re fresh, hot, and totally fattening! Anyway, I got my sugar buzz courtesy of my ma who brought a really good brownie in from her latest foray to Wendover, Nevada. With a little black coffee, it made for a great afternoon treat.

Learning the names of doctors has proven challenging because they typically rotate through different departments. This is compounded because there are two teams of doctors who attend me. There are the hem/onc (hematology / oncology) doctors which specialize in the treatment of the blood cancers and there is the medicine team, which is the group of doctors that administers what you might consider routine. They consult with the hem/onc doctors to make sure their treatment is consistent and they carry out the chemo orders prescribed as well. At least that’s my understanding of how the two groups work together.  The hem/onc doctors hold clinic at the VA on given days and then there are fellows who rotate through the Huntsman Cancer Center and other outpatient clinics as well as the VA on a monthly basis, so I’m actually on my third hem/onc fellow while the main doctor is the same one overseeing my treatment, oddly called “salvage.” The medicine group also rotates through but on different time schedules, so I’m on my third medicine team as well. The medicine team more closely resembles what you might see on “Gray’s Anatomy” where there is an attending physician, a resident, and a gaggle of interns, all taking notes and paying close attention. I probably don’t make it easy on them because I’m playing class clown and it’s this group who was entertained by my crass t-shirt and ‘no hair day’ beanie. Once I turned the subject to medical details, it was obviously a different story and it showed that the class clown was also paying close attention to what they were doing, even though my results were pretty low-key.

I used my one-on-one time with my hem/onc fellow today to drill him on specific questions I had. Trying to get information on the Internet, even from the most reliable sources, tends to be rather noncommittal and doesn’t address the kinds of questions I have.  I had also been visiting the Leukemia-Lymphoma Society bulletin boards and finding that the questions and answers there were typically geared toward children and more elderly patients. Much of what I read focused on relapse as well, which gave me a whole new line of questions to ask. Last week, I found out that the particular strain of leukemia that I was diagnosed with was referred to as “M5B.” This “staging” of my particular cancer has more to do with how well cells mature from my bone marrow than any severity of the disease. This was a relief as I had been thinking that the higher the number, the worse things were as it is with cancers with physical tumors associated with them. With the exception of the M3, they're all treated the same at the onset with rare exception. I also prodded him about prognosis, but he explained in a bit more detail than I got last week with my other hem/onc doctor that it comes down to how well my transplant goes and the reason that I had to get a transplant rather than simply getting chemotherapy since I had normal chromosomes. “Normal” chromosomes don’t make someone either high or low risk of relapse after induction chemo, but there are two additional mutational tests that are run in conjunction with the initial biopsy. One of these mutation tests made me low risk, but the other test came back positive and offset the first and indicated that without a marrow transplant, the leukemia would certainly come back.

So, on to the transplant. Once that happens, there will be inevitable graph versus host issues and that’s important.  The severity of that is staged on a scale of 1 to 4. With no graph versus host (GVH) issues, it is likely that the leukemia will recur; on the other hand, a severe case isn’t something we want either, but it does indicate that the new immune system is aggressively attacking the leukemia and of course, that is a good thing, so the hope is that there is a moderate degree of GVH. My big question had more to do with restrictions after getting back from the transplant and the good news is that my “new normal” is simply a matter of maintaining a frequent flier status with doctors and hospitals, but this kind of interaction wouldn’t be a lot of inpatient like it is now. It would also make it easy to see if there was a relapse very early and come up with a different treatment regimen quickly. As for getting physically active and traveling and doing the things I wanted to do, no restrictions. And that, my dear readers, was what I really needed to hear today!

So, we move toward getting this transplant done and getting to the new normal. You all know I have places to go, people to see, and I do have some perfect moments to discover!

My music selection for the day is Lee Ann Womack’s I Hope You Dance. I chose it as a nod toward a friend of mine who is on the downside of his own battle with AML.  He is my daughter’s father in-law and although admittedly cancer sucks, for him it was well...a dance!

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance
I hope you dance