It's been about a month since I posted and I thought I'd provide a bit of an update. Let me know if this is too much sharing (I'm mindful of the "moving away from original function" thread of posters not liking threads such as this). However I feel a sense of warmth, support, welcome and community in this forum I don't experience in my other wanderings on the web.
I've been home now for a month. My pain levels vary from "minimal pain (but always there)" to "I'll stay in bed all day today". Which is a bit of a nuisance as I'm otherwise quite well, though I tire easily - 5,000 steps and I'm exhausted. I can't remember what it is like to be pain-free.
My current cycle of weekly IV and SQ chemo continues till mid-May: I'm amazed that so far I've had very little reaction to my chemo. My best friend picks me up each week after chemo and we head for a great little Vietnamese restaurant in Bay Street for a good meal. He's a total rock.
My blood test results also are looking good supporting my general feeling of wellness: NO changes to red or white cell count, liver and kidney function tests all have been normal, cancer-specific proteins fell to normal early on in the piece.
One of the consequences of weight loss is that my fingers are thin......... somewhere in Melbourne last week my wedding ring quietly slipped off and is now lost - a metaphor for the state of my marriage I guess.
On the bright side, it looks like I'll be approved for a stem cell transplant: full triage and pre-transplant work up starts in a couple of weeks. The specialist explained that this is likely to prolong my quality and quantity of life from 18 months to 5+ years. I asked about the CAR-T therapy that's been in the news lately: he's actually involved with the research into CAR-T and while it's not currently used / approved for multiple myeloma (it's looking good for leukaemia), he's optimistic it might be available in 5 years or so (and was quite blunt that my stem cell therapy was designed to keep me alive till something else comes along).
The stem cell transplant therapy is quite involved and will cause me to be very ill (not to mention the 3% mortality rate). Basically they ramp up the chemo (complete with side effects) then wait for a bone marrow response. Stem (plasma) cells are then harvested from my circulating blood and frozen. Very high doses of chemo are then instituted to completely destroy all my bone marrow, sending my white cell count and platelets down to zero. Diarrhoea, intestinal bleeding, mouth ulcers, general debility and weakness a certainty. My stored plasma cells are then returned to me and my bone marrow should regenerate within 10-12 days with a recuperation period of 2-3 months. (The absence of white blood cells and platelets will mean I have to be hospitalised while the bone marrow reboots as I'll have no protection against infection or haemorrhage.)
My youngest son is also at home job hunting and recuperating from elbow surgery so is my driver when I need to head for the supermarket or go to work to do the pays etc. I try to get to work weekly to at least feel like I'm still a part of the practice. My wife is currently looking for an apartment to purchase, inviting me to come along to the inspections.
Scared? Absolutely. In fact, I start to tremble even just reading back the paragraph above.
However, I'm generally a glass-half full person so I'm optimistic that with the right care and support I'll get through this next challenge. I keep looking at travel options in 2020 to give me something to aim for and accomplish.
Thanks for the hugs and likes - so simple to click, but it lifts my spirits enormously to know people actually care (sorry, my words don't convey my feelings adequately). I'll really need them in June-July.
