RIP Big Boo

Read the news that Don (Big Boo) Baylor passed away.  He was a great baseball player and bravely fought multiple myeloma for 14 years.  In 2014, his team, the Los Angeles Angels celebrated what were then the only MVPs in club history by asking Vladimir Guerrero to throw out the ceremonial first pitch and Baylor to catch it. Guerrero’s throw was low and away, and Baylor’s right ankle gave way.  He limped off the field and was taken to the hospital where he learned his leg was broken.  It was the cancer, of course.  This is sad news, indeed.  He was a great player and a great human being.

As for me, a few updates.  After suffering from some nasty side effects (frequent diarrhea and muscle cramps) I visited with Dr. V and he suggested we take a medication break.  So, the Revlimid is suspended for now and I’m only taking Prednisone – every other day.  I plan on visiting with Dr. V again when I return from a vacation at the beginning of September and at that time we’ll determine whether to back to Revlimid, try something else, or just stay with a steroids-only regimen.  Dr. V did say he has several patients who had gone to steroids only and were doing well.  That would be wonderful, of course.  But obviously I’ll want to stay with the best regimen that maintains my remission even if it means dealing with some side effects.  So…we’ll see.  Meanwhile, I’ve been off the Revlimid for about 3 weeks now.  The side effects have diminished considerably and I’m also sleeping a lot better.  I was waking up in the middle of the night previously…unable to get back to sleep.  This could be due to the medication adjustment or to the fact that I’ve begun a practice of daily meditation.  Whatever it is, it’s nice.

Welcome to FatigueVille, but It’s all Still Good!

Hello 8.7.17

Being a deep thinker has its advantages and disadvantages.
I’m always thinking. Thinking Thinking Thinking. Analyzing Analyzing Analyzing.
When I woke up the other morning, I was struck by how “relatively ok” I felt,
albeit exhausted, always fatigued, achy, with some neuropathy, but ok. I was truly
surprised I felt so ok, as feeling Not ok is my regular, “new normal”, and feeling well
or ok, is “abnormal” and surprising. Then it hit me… I really am doing ok on this current triplet
cocktail treatment. It’s still working it’s magic and dominating the myeloma cells. I
smiled and thought, “I’m alive! Seven and a half years after diagnosis, I’m
still alive, and my current treatment is still working! Still working, still surprised… is my new normal.

Many of you may say, “well of course you’re still alive
Julie”… but seriously… it is a miracle, considering the aggressiveness of my 7, (almost 8)
year myeloma battle and my history of burning through treatments after about a
year (or less). My current triplet treatment of Darzalex, Pomalyst, and Dex
steroids have been suppressing the power of the myeloma cells for about 5
months now. I marvel at my (still) low IgA numbers and almost non-existent M Protein.
I marvel at the power and chemistry of the myeloma meds keeping me alive. I constantly
think about the “intelligence” of these medications, altering the chemical
properties of me cellularly, fighting this ferocious battle within me. Cells killing
cells. Powerful medications giving power to my internal self, in a
bio-chemical-physiological way I still cannot comprehend. 
 Although I am currently doing ok (or so I still think, as my
monthly status labs will be later this week), I never let my guard down. I live
month to month, blood test to blood test, always prepared for the roller
coaster shifting in the “wrong” direction. Another “new normal”, rather an “altered
normal” way of thinking. Taking nothing for granted, always wondering what’s
around the corner. The When, not If, will my status change? It’s kind of like
living, while always holding your breath. Living on a precipice, wondering when you’ll almost fall of the edge… again.
Do you recall my post from a while ago, where I asked my SCT
oncologist a “be honest with me” timeline question? This was at an appointment
where my labs told the tale of me not responding well to my previous treatment,
and we were discussing my next treatment options. Without sugar-coating my
question, I bluntly asked: “So Dr S, what if I decided to take a medication
break, or I just decided I couldn’t take all the side effects any more, and stopped treatment… How
many “Years” would I have?”, I directly asked. With a pause, and thoughtful caring
voice, he looked directly at me and said: “it would be months, not years. Many
months, but not many years”…. 
Saaayyy Whaaaat, I processed. He must have heard me wrong.
So I restated the question, emphasizing the word “Years”. “How many Years would
I have left, without any chemo treatments?” He leaned over very intently, and
replied, “Julie, I’m not “God”, and I don’t have a crystal ball, but if you
chose to stop all treatments, it wouldn’t be “years”, it would be “months”… “it’s the medications keeping you alive”… My
myeloma numbers were pretty high at that time, so I understood and absorbed the
gravity of what he was saying… 

Yes, I’m a thinker, a what if-er, and a pragmatist. I want
the truth, the whole truth, and in my face. I want to assess my options,
knowing if I even have options. I’m constantly trying to wrap my head around
this situation I’m in, that still feels surreal, and still seems like it can’t
be. That I’m really talking about someone else and telling someone else’s

Forward march, my march. One day at a time, one week at a
time, one month at a time, one blood test at a time, one infusion at a time,
one pill at a time. This is my life. For however long my life is, according to myeloma.
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can


Infinite sunrise (Blelelele-lelelele-leleleleh. Aha ha ha. Ah ha ha. Ooh yeah.)
Perpetual Dawn – The Orb

Checkup … KFLC = 464 … Hb = 11.2 … Neutros = 1.1 … κ/λ = 82 …

Every myeloma journey is different. Mine appears to be quite considerably a mind game. I walk down to clinic having steeled myself for the inevitability of restarting treatment, and concerned primarily with when it will begin and what protocol I’ll be on.

To be told that my light chains have dropped (by nearly a third) is – to put it mildly – a surprise. This means the treatment conversation can wait a little longer, my κ/λ having dropped well below the 100 threshold. The registrar doesn’t have anything to offer on the whys and how-comes, and I’m beyond asking. It just is.

I have no energy, either, for guessing the next instalment. Maybe this result is a blip and next month I’ll be preparing for chemo. Maybe the last few months were the blip and my light chains will go up slowly again from here. Maybe this is a new trend and my light chains will fall further. No-one can know, and I don’t much care to pretend to have any inkling. We’ll find out, soon enough.

The doc signs me up for another MRI and a BoMB in a couple of weeks. (So that’s something to look forward to!) I’ve been feeling intermittently well and not, of late. I’m certain the myeloma is lurking about, but if it chooses to keep its distance, I’m OK with that.

“Sunrise with phone mast” (view from my bedroom window)

My myeloma is challenging to comprehend and process. It leaves me permanently on edge, perpetually a month away from treatment. I’ve been relapsing now for 2 whole years. But I’m not complaining. It’s better than some of the alternatives. With absolute horror I discovered, a few weeks ago, that one of my friends, whose myeloma journey started simultaneously with mine, and who I have always considered to be my ‘myeloma twin’, has died. I’m horrified for her: she was younger than me; and at the end she endured plasma cell leukaemia – a tough way to go. And I’m horrified as much for myself; one can’t have a much more intrusive reminder of one’s own mortality. I will miss her companionship. I hope her family and friends can find some peace.

After clinic, we drive to Sussex. I’m just unloading our bags in the rain when a car careens greasily down the mud flecked lane, mounts the verge opposite me, rolls onto its roof and then cartwheels end over end down the hill. It lands on its wheels, but the roof is stove in, and much of the contents of the car – papers, CDs – are strewn across the road among the smashed glass, light fittings and bumpers. I walk towards the steaming wreck, with a sick feeling in my stomach of what I’m about to witness and have to deal with. And then – improbably – the door opens, and the driver just steps out. He is very dazed, and has a lot of superficial lacerations, but he is basically unhurt. As he walks toward me he casually picks his phone up from where it is lying in the road. I take him into our house, to sit down, stop the bleeding, and wait for police and paramedics. It is chaotic: our luggage is all unpacked and underfoot; there’s blood on the floor and on the buttons of the telephone. Our very new puppy is somewhat awed by all the high vis jackets of the procession of visitors who proceed to walk in, accompanied by plenty of rain and mud. But as the driver sits and calm returns, I’m reminded that life always has space for miracles (and of the amazing safety specification of modern cars).

I hope he enjoys waking the following morning as much as I do.