Other than a few bruises, I’m okay. I had a nice walk in the park this morning and everything was good. We went to the Farmers market later and got a bunch of nice veggies. Onions, peaches, strawberries, cucumber, beets, and probably something else. Then we went to Panera for a coffee. Then after I came […]
We spent almost the entire day Thursday at the vet clinic with Piccolo, our (now) eldest cat. He was recently (last month) diagnosed with spondyloarthrosis, a joint disease of the vertebral column. It’s a very painful, degenerative condition… Thanks to my research online, however, for the past two weeks he has been having laser therapy…
So, I’m on my last round at the park and in the distance, I see the lady who used to walk her big mastiff, Jack. He’s probably 200 lbs. Always mellow. But I haven’t seen her in a good six months and right before that she had bought another mastiff, a female. So when I last saw […]
Dr. Ketan (Edward Scissorhands) Badani First an update on my kidney tumor removal. Dr. Katan (Edward Scissorhands) Badani of Mt. Sinai is one of 5 or so doctors in the US who has completed 3000 kidney resection surgeries using the Da Vinci Robotic Surgery. If practice makes perfect, Dr. Badani should be able to do a kidney resection in his sleep. That is why I went from Wisconsin to New York for this procedure. I have chosen, if possible, to never leave a co […]
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.
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.
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.
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”….
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…
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
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 well, and make a difference somewhere, somehow, with someone or something
as often as you can
Our temperatures look nice for the week. Low 90’s. It actually cooled off last night and our walk this morning was nice. We are on day 67 of year 5. There have been a lot of people walking at 6 am. I guess because of how hot it has been. So it’ll be nice if […]
On Saturday I travelled to Granville Island to watch the sunrise. It should have been a beautiful sunny morning with blue skies. Instead it felt chilly and the sky was filled with a smoky haze as far as I could … Continue reading →
The post Week 129 of chemo complete: Sunrise through a smoky haze appeared first on Fade to Play.
Well, we went back to Ikea this morning to return the file cabinet. It didn’t fit under the desk and was just sitting on the floor at an awkward angle. So we decided to use an old file box my daughter still had from school that will actually fit on the bottom shelf of the […]
Perpetual Dawn – The Orb
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.