Hey everyone. Thanks to a very nice and compassionate ticket agent I am resting at home in my own space, after a short but solid night’s sleep. I hit the sheets around 3 and took a while to wind down, but once I was out I didn’t move till 9:30. I’m sure today and the weekend will be filled with more resting and naps, as I recharge and tackle this flu.
I’ve had about a million thoughts run through my head since writing to you all yesterday. I was really wanting to write a message from the plane, as that is what I do most every time I fly, but there was no gas in my tank after yesterday. True to form I have no idea what those thoughts were. When I write these groups messages I do so with a feeling that says “time to write” and then I sit down and let it fall out on the screen.
Here goes – straight out and honest. It may not be pleasant reading but my commitment to be open and honest is most important to me.
I said yesterday that we have “less good, and more bad”, which is exactly what I expected. If you think about the past 3 years, and all the treatment that I have had, that makes sense. While I may have recovered to the point where everything looks good, I look healthy, the truth is that all those poisons I have had run through my system – the chemo, radiation, antibiotics, blood products, etc – they have a big-time impact on me, short and long term. Thus additional treatment is often more involved, and a second Transplant would be much more involved for me. Two reasons, the first is because it would be my second, and the other reason is because the approach this time would be more “toxic” to use my Doc’s word.
The numbers for first and second Transplants look like this:
1st Transplant – 70-75% Success (Cure = 5 year Remission), 6-7% Fatality Rate, 10-20% Relapse Rate
2nd Transplant – 40% Success Rate, 20-30% Fatality Rate, 20-30% Relapse Rate
Other comments my Doc made were that I have relapsed at a very uncommon time. Prior to 2 years is very common, but at this point in a recovery is not something he sees very often. Not bad or good, just different as I understand it. He feels I have a 70-75% chance of getting to the 100-day mark after Transplant, which is a significant point in a Patient’s recovery, and as I said I can expect that things will be more involved regarding my complications and my general well-being.
There they are, not really inviting when you compare to the original set of numbers I was presented just over 2 years ago, but as always there are Positives if you are open to seeing them. The big Positive from yesterday’s chat was that we are still talking CURE, not maintenance. That is Positive, and also not something to be taken for granted, as we don’t do any of that!
Where my mind is…
The numbers, while they do speak volumes, they are not a real surprise to me and I have no trouble with them. I wouldn’t mind if they were more in my favour, but they don’t bother me. Right now the waiting period is something that is not sitting well with me, whether having more chemo influences my Success Rate or not, the fact is that it means more poison, more of a beating physically, more complications with infections, and all of those things have a cumulative effect. And that effect would absolutely influence my experiences during a second Transplant, there is no doubt of that in my mind.
The other thought that is playing around in my head is one very unrelated to my present decision, but it is there running around demanding attention every so often. As we were finishing our conversation my Doc made a kind of the cuff remark regarding my chances of ever getting 30-40 years out of a Transplant, and it wasn’t an optimistic comment. It wasn’t said with any harsh slant, there was no ill intent, just a comment that further added weight to my present situation and the fact that I’m very lucky to have today. If I get tomorrow that’s a bonus, and if I get 5 years of tomorrows then that will be more than 60% of Patients in my situation.
Again, not things that I didn’t have a feel for, I guess it has a different impact when it comes from a Doc. Perhaps hearing that comment I advanced myself those 30-40 years, not sure what it is but either way that is sitting with me. Thinking down the road is not something that I have allowed myself the pleasure of, but it is something that I feel is time to do a little. The Transplant decision obviously requires some thought down the road, but I’m talking about a little further than that even.
I’m not quite sure where my mind is right now, I know it’s pretty full, and I’m just throwing thoughts out here as they come. I’ll continue to do that over the next number of days I’m sure, so you may see me in your inbox lots, or possibly not at all. I would like you to know that I am up for the Challenge of finding comfort with my discomfort, and when I am presented with Challenges like these I tackle them straight out, head-on, and that’s what I’ll do here. It may take a little while, as it’s my perspective that I’m playing with, but from there I’ll evaluate my options with the additional information I’m hoping to gather over the next number of days and then a decision will follow.
Have a great weekend, and enjoy being wherever you are. Back soon.
Always…
Live Life. Love Life.
Geoff
