Not even sure where to begin this.
I guess just the facts to start. Tuesday night I started feeling a bit run down with a tiny productive cough and some minor nasal congestion. Given all the craziness of the last two weeks (IViG, blood transfusions, bone marrow biopsy, the usual weekly chemo, the Neulasta shot, etc.), I was inclined to think it was just the aftershocks of all of that. Wednesday I woke up and felt like Hell … low energy, body aches, the nasal/chest congestion. Went to work but came home at lunch on my last personal drop of energy and slept until about 10 pm. By then I had developed the sweats, chills and a 102.3 temperature.
Waiting until morning we contacted CBCI and they gave me an appointment, but after waiting an extra 30 minutes in their office past my appointment time we realized they were so slammed that I might as well just go to the ER downstairs. The ER did the usual stuff (chest x-rays, cultures, blood tests) and decided I had pneumonia again, so the wife and kiddo went home to get Ari to pre-school while I waited for the inevitable admission to the hospital. They brought me up to the oncology ward and I’ve been here ever since, fighting what they now tell me is the flu. Let’s see … sweats, chills, full body pain, cough, nasal congestion, zero energy (due to damn near zero hemoglobin again), nausea and the kitchen sink. Thankfully the wonderful nurses here have been a big help even slammed (I got the last bed in this ward, which for whatever reason I always feel guilty about), and the Dilaudid and now Oxycodone (Dilaudid works great but gives me a headache at the end of every dose) have gotten rid of the pain.
They’ve done nothing for my mental state.
Even though I was forced to skip chemo this week my counts are still really low, so I’ve had 3 transfusions in as many days. More disconcerting, however, is I met with my oncologist today at the hospital to discuss my treatment and bone marrow biopsy results from Monday. Since the beginning of March and this Daratumumab / Revlimid / steroid therapy my M-spike has gone from 4.4 to 3.5 in just over a month. That’s great, right? Problem is my kappa is going the opposite direction and I get the feeling that the doctors are a bit confused by that (apparently they usually march in the same direction). Not sure where my IgG is but I’ll try to find it. Anyways here’s the scary part — my plasma is 90%, according to the bone marrow biopsy. As I understand it what that means is in the sample they took from my pelvis on Monday placed on a slide, 90% of the white blood cells are monoclonal (bad) plasma cells.
My oncologist didn’t say it, but I’ve done enough reading to know that that’s probably why my counts are so bad — the good blood cells are being crowded out by the bad ones. He wants a few more data points so we’re going to continue this for a few more weeks but chances are he is going to change strategies soon.
I’ll be honest, I’m kind of heartbroken by all of this. I’m just so tired of it all. I’ve been slogging through this fucking mess for what, 4 years now? And there hasn’t been a break. Chemo after chemo after stem cell transplant after chemo after chemo ad nauseum. Barely a partial remission, and when I took a two month chemo holiday this year for my surgery my numbers almost doubled. I feel like this burden just gets heavier, and heavier, and heavier.
So here we are, realistically at what could be near the end of the journey I’m guessing? I have 90% bad cells and my counts are low, so where do I go from there? Now I have no idea. And you know what? If this is it, I’ll be honest — part of me doesn’t even care. I read about these folks who have done 20 years with Myeloma and I don’t know that I have that strength even if I’m given the time. I just need 13 more years to get Ariana out of high school and I feel like that’s being taken away now as well.
I can’t even mentally go there right now, I’ll be out the goddamn window.
Just once, I would have liked to had a blood test that showed whatever we were doing was working amazingly well. But man, not one in four years now. I can’t describe how brutal that is, week in and week out, to try to summon just a tiny drop of hope and watch it get squashed every time. I’m tired of doctors and nurses and hospitals — I like the folks but seriously. I can barely even work now I’m down here so much. Sick of being afraid to kiss my daughter, and having to wash my hands like I have OCD. The dumb thing is the IViG at least has been working — I haven’t really been sick since I started it except for this stupid flu (which I’m not sure IViG could deal with anyways).
I’d like to think I took a lot of this in stride. I had to give up diving and my path to become a diving instructor, a real passion of mine, and even though I knew it was fucking dumb I kept up hopes that someday I could safely do that stuff again with my immune system. I go to most of my appointments alone because even though I appreciate the support I don’t want to put this cloud over other people. Plus I’ve found having folks there at times can make the emotional wall crack, especially if it’s my daughter. I didn’t really even want much from life anymore — time with the people I care about, their health, and some quiet time to ponder things.
I give up, this entry is going nowhere. Sorry. I guess this is where I’m supposed to get religious as a cancer victim now, right? Yeah. Problem is the only God in my world is Random Number Jesus and he just keeps rolling the bad 7’s for me, one after the other.
Oh. Have a positive attitude Rich! Keep your chin up!
Yeah I’ll get right on that.