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Sunday, November 19, 2017

Forget About It - Part III - Me: 3, Myeloma: 0

And my zero
To your power of ten
Equals nothing at all

-- Ian Anderson

Today is the anniversary of my (first) stem-cell transplant (SCT). November 19, 2014. I've had only the one, but I'll say "first". Myeloma trains you to use such hedging. Many SCT's are done on an outpatient basis, but my case was complicated enough (by dialysis, etc.) that my doctor wanted me inpatient. So, for 17 days I lived in the "bubble" up on the 9th floor at the Duke University Hospital, which is the Bone Marrow ward in the cancer hospital. It's "a bubble" because it has double entry doors, the inner door must be opened from the inside by an attendant. The ward maintains positive air pressure: all the air flows out of there and into the main hospital. The individual rooms are similarly higher pressure than even the ward: pushing more air (and bugs) out every time the door is opened. The rooms have individual HEPA filtered air; you won't see a dust mote in a sunbeam in there.

On this day in 2014 the nurses began by writing my white blood cell count on a small white-board in my room.

Today, three years ago it was: 0.

That means: 0 detectable white blood cells, which means if you come in contact with some nasty bug, quite possibly you could be history: your body can't fight it off with 0 soldiers. I remember feeling extremely vulnerable during this time.

Waiting again; waiting 
for 0 to become not-0 

It then becomes part of the daily routine. The first thing in the morning a nurse writes the number for the day, based on blood draw in the mid-to-late-night. 0. Followed by 0. Then 0.1 (not 0!) and so on up and up, hopefully, waiting for "engraftment" which means your new stem cells had found their way back into your bone marrow (however they do that), and they're instructing everyone else to do what they should: make good white blood cells.

Conceptually it sounds easy; but it's beautifully, horribly complicated.

Rocket out of Here

Once the "0" was written down, I distinctly remember thinking, Ok, I just need to get past this and down the "timeline" as fast as I can, whatever that means. I just need to tick off the hours, days, weeks to get away from this and leave it far behind.

Seemed like just then I was living hour to hour, day to day, waiting for that 0 to become not-0. They give you some nasty chemo drugs to kill of your bone marrow; and as a side effect it kills off a good many other things, white blood cells included. You remember them? They fight off all the nasty things that try to (or do) get into your body. And until your white-count is 0, you don't think about how many nasty things that really is: always every day trying to get in, or getting in and just "being handled".

My days there were filled with all kinds of hospital activity, mostly things I want to forget. Blood transfusions, IV drips of red blood cells or Magnesium, dialysis, industrial strength diarrhea, crappy food, ultra-thin toilet paper, endless beeping machines, Sunday butt swab, frequent nurse checks (even throughout the nights), little sleep, mandatory exercise.

Every day the doctors, pharmacist, nurse(s) would visit everyone's room on the floor on "their rounds". This is more than a little intimidating because you have at least 5 people standing around you, in a smallish room, all looking at you or asking questions, as if you were able to do something about all this.

I, however, had months ago realized I was just riding; some people call it "handing the wheel over to God"; and maybe that's the same thing; but the main idea is: you don't control anything, Buddy, so make the best of it while it sorts itself out.

One thing I remember, though, to the positive: the way my doctors came close and listened to my lungs. It was that close human contact that is re-assuring. And it was this listening and human contact that led to the detection of a nasty bug in my lungs.

Not machines, but people;
human closeness
intently caring.

I did then have a bout with something nasty while I was not far away from 0. Once your "engraftment" hits, you sometimes get a fever (named engraftment fever, surprise!). Something got into my lungs, however; and there was much scrambling and medicine; it was more fever than they wanted to see.

There were IV antibiotics, bed-side chest x-rays, and so on. This gave me a weird feeling. It felt like it didn't really matter what the doctors were doing (even if the best, smartest things), or what their theories were, versus what is actually going on inside me. I realized again: I'm just along for the ride.

The die is cast; so it's just wait and see.


That nasty whatever-it-was did go away, possibly done in by my new white blood cell re-enforcements, possibly from the medicine; or both. I did eventually get out of the hospital, and we came home, only to be quarantined for more many weeks more,. I was required to stay away from other people, more or less. That was fine by me because I was extremely tired, way more tired than I can ever remember being, ever. My bed was like a siren song calling me back; and the one thing I wasn't supposed to do was sleep all the time. But oh, that call.

Some people want to visit you, which is blessed, but under these circumstances, no-one should. It falls on your care-taker to turn them away; they're the ones with the disappointing news, seemingly unnecessary or off-putting to some. But, most everyone "got it" and accepted the conditions, and were not offended. Any extra fevers or bugs that come in by well-meaning souls only guarantee a return trip to the Duke Emergency Room, and possibly back in to the "bubble".

I love them all, but no thanks.

We got through this with the help of family and friends, many of which from our church. You can't do this without family and friends. You can't. If you don't have faith, I'm not sure what you do; when you close your eyes and beg for mercy, to whom are you begging? The Universe? It doesn't care. Maybe pray without really praying.

By the Way: Did We Mention the "High-Risk" Profile

Everything seemed to be going as well as could be expected at the "SCT +3 month" mark. I had a routine return visit with my transplant doctor, and we thought it would be all great, high-fives and back-slaps. But, no. There was this problem with my "cytogenetics" report from when the MM was active, about a year ago.

Turns out there were some "high risk" markers; certain chromosome abnormalities and so on.

This was (devastating) news to us; either we had missed this detail from earlier discussions, or it was never made clear to us until now. Either way it did not matter. This was news to us.

What did it mean, though? There is much debate in medical circles (as we've since learned), but my transplant doc was afraid it meant I'd relapse within a year, based on her clinical experience. Let's face it, she sees many many MM patients; more than most hospitals. My blood tests possibly indicated "active disease" still, she said.

They wanted me to do 
another stem cell transplant. 
Like within the next few weeks.

There was no way I could do another one just then. This news was crushing. Absolutely crushing.

So, after much hand-wringing, we got another opinion from a different doctor over at UNC Hospitals. He's a well-respected Myeloma doctor, also, but not a "transplant doctor", per se. To make a long story short, his opinion was: you're in complete stringent remission. No second transplant is necessary. That blood test was higher than normal, yes; but, because of my kidney failure, he said it was expected to be higher than normal; it did not necessarily mean the disease was still active.

This is precisely why I tell people not to be shy about seeking out second (or third) opinions from specialists in the field. It's your butt on the line, so don't feel so bound to one doctor's opinion. Especially with a complicated disease like MM.

A bone marrow biopsy was ordered to find out once and for all; and it was, thankfully, negative. As in: "MRD Negative", which is pretty much the most sensitive test that can be done in this day and age. Basically for that test they count 2 million of your cells and look for any Myeloma cells in there. I had: 0. By the way, back in May of 2014, when this all began, that number would have been: 1 million.

But this was a different, better kind of 0. But of course it comes with its own caveats. Myeloma can be "patchy" within bone marrow, so just because they didn't detect any within that one place, it's possible it's still brewing somewhere else. Doctors have to say these things, and it keeps you from becoming too overreaching in terms of your outlook.

The Negative of Bad is: Good

On this third anniversary, I am both joyful and sad. I am sad because I know some MM patients that did not make it very far past their diagnosis. So, it makes me wonder why I were spared and they were not, especially if the doctors' opinion was you are "high risk" for relapse, and for MM relapse often means: bad news.

I think this is what they refer to as "survivor's guilt".

This also put my faith in peril, because why are some spared and some not? Not because of their lack or abundance of faith, their purity of faith, their attendance record on Sundays?

He causes his sun to rise on the evil 
and the good, and sends rain on the 
righteous and the unrighteous

Matthew 5:45

Now I look back from my "timeline-rocket", and I'm thankful I am far away from that time and place, but I'm keenly aware that others are back there now, or they didn't make it away from their 0 in their own time-rockets. I feel like I'm deserving of this perspective; to a certain extent I have earned it. And I think (hope) that those who did not make it would approve; we honor their memory, also.

I do have some fond memories of those times, especially the care from the doctors and nurses. They are so very dedicated and invested in their patients. I do not know how they do it. Also, I remember the personal contact some people made during this time.

Today, I choose to remember these fond memories while acknowledging those who have gone.

It's sometimes the littlest of things that make the difference, so if you know someone going through a similar situation, maybe try these:
  • We have some (older) friends from our church, they are the sweetest people. She sent me several hand-written cards and notes. I would take one of these over 6 billion "likes" on any social media; any day of the week.
  • Last year, on the two-year anniversary we had a party here at the house. Several of my friends got involved and we decided to raise money for UNC and Duke Hospitals by shaving our heads. Idea was if we got $1000 the lot of us would do it. I said I'd do it for $200. Turns out we raised over $2000 for this event, thanks to the generosity of our friends, their families, and their friends.
  • This year my wife and I started a support group for Multiple Myeloma patients and care-givers. Survivorship comes with some obligation, I think, and we aim to provide a supportive community to those near us suffering from this same illness. We're affiliated with the International Myeloma Foundation
    • Other causes I feel passionate about: donating blood; and organ donation.
  • One of our friends prepared for us a "basket" of goodies for the hospital stay
  • My sis-in-law and mom, and my kids, made some holiday decorations and put them up outside my room in the transplant-clinic on the 9th floor. We had lights and a great "fireplace" scene; and an "Elf-on-the-Shelf" which hung in a face mask on my door, just like a hammock.
  • My pastor spent time with me, even in the "bubble". Even when we did not talk, I just laid there, and when I opened one eye: he was just there. Just there. Sometimes when you open your eyes and you see someone there, close, it's support enough.
  • My sis-in-law came with my mom to help out, and she was a blessing
  • We spent Thanksgiving 2014 in the "bubble". My mom made dinner for the kids at the house. My wife and I had dinner at the bedside, such as it was. Some volunteers brought some desserts by, and that was wonderful. I didn't eat any, but just seeing someone doing that on their day off was awesome. My mom and the kids came by after. 
Maybe the most thankful Thanksgiving ever.

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