Just had to post this while I’m thinking of it. If you’re having to take Methylprednisolone, here’s how you get rid of the awful taste – peppermint. I started to discover this last week, as it seemed to take a bit of the bite out of that horrid taste. This morning, however was a Morning of Note. I screwed up on the pill taking and it stuck to my tongue. Ordinarily, a situation that leaves me with that taste for the rest of the day. I chew on a couple of my Brach’s holiday-style peppermint nougats and the taste is GONE baby! So remember – always keep a bag of peppermints near you.
I stumbled blearily into Andy Clarke’s website this morning and saw that he had a post today about his referrer logs and associated interesting search terms used to find his site. That prompted me to go back through my logs and see what jewels were waiting out there for me. Here are some of the best, going back to mid-2004 or so.
Talk about adding insult to disease. First I find out the cancer’s still going, then I go to play hockey and get cheered up and we get beat 10-0. Ouch. And that’s only because the league has a mercy rule – the game was called with almost 6 minutes remaining. OUCH.
I don’t know how it is that I wind up on hockey teams that don’t understand positional hockey. Our opponents sure seem to. My current team’s defense is also having trouble moving people out from in front of the net. Basically, they just stand beside the person and watch the play. I’m thinking I might have to switch to defense, not for my lack of offensive ability, but for my team’s lack of defense. Even though I was ostensibly a forward last night, I was clearing people from the front of the net on our penalty kills and I made one skate save and one head save in the game. I skated my ass off and felt like I was the only one who did, especially today since I can barely walk from the muscle soreness. I might not be a great player right now, but at least I was trying.
On the plus side (so to speak), I was a -3 for the night. Bad numbers, but good in the context of the game. I gotta switch to D.
I told everyone in the locker room about my diagnosis after the game, so hopefully in the next game it might occur to them that if a cancer patient is out there skating his ass off, maybe they should be too.
Not that I’m bitter or anything. That’s probably just my thighs talking.
Well, we didn’t get the news we wanted to hear yesterday. In the PET scan before this last one, I had one tumor left. It was in the middle of my chest and 1.8 cm in size. For reference, 1.8 cm looks something like this:
I still had a couple of doses of chemo after that scan, so we expected this latest one to show the tumor either gone or significantly smaller. The results of this latest PET scan show that tumor to now be 2.7 cm in size.
Not only is it still there, but now it’s bigger. Wonderful.
Just to help try to lift our spirits, Barb asked the doctor to go through the results of that initial PET scan with us (the one taken right after I was diagnosed). In that scan, I had tumors in my spleen, my neck, above my collarbones, under my arms, nodules in my lungs and tumors in the middle of my chest, the largest being 6 cm.
Six months later, we’re down to just that one in the center of my chest. So even though these latest results aren’t what we wanted to hear, it’s rather amazing that this is all I have left. My doctor even described me as a remarkable patient with an amazing recovery, so it can’t be all that bad, right?
So what’s the next step? As we speak, my doctor’s trying to get me in to see a doctor at Yale. He’s a hematologist/oncologist like my current doc, but he specializes in two fields: Hodgkin’s disease and stem cell transplants. This doctor will look over my case and see if he agrees with my doctor’s findings and conclusions, namely that our next step should be very high dose chemotherapy with associated stem cell transplants. Once he makes the decision, I’ll be going in to see him and get the whole rundown on what will be happening to me. In the meantime, here’s what my current doc told us. If you’re getting tired, you can stop here, ’cause I’ve already covered the important stuff. Also, the following paragraph is what I recall from what my doc was explaining, but I wasn’t in a very good frame of mind at the time, so it may not reflect reality.
Once this is all decided and planned out, I’ll make a few trips to the hospital at Yale. These trips will be to harvest stem cells from my body. Basically, they’ll give me that accursed Neulasta shot, which will make my bone marrow pump up its stem cell production, since stem cells are basically just new blood cells. Then they’ll draw a lot of blood from me so they can sort out these stem cells and keep them handy. Once they have however many they need, the chemo starts. My last chemo was pretty high dose, but I was able to walk in to the clinic, get my chemo and go home. This one is much, much higher and more evil. Basically, for each administration of the chemo, I’ll be checked into the hospital and put into an isolation ward. The chemo is going to be so powerful, it will completely shut down my bone marrow’s blood cell production. After the chemo is given, that’s when they’ll inject the stem cells back into me. The new influx of stem cells gives the bone marrow a kick to the head and gets it to start working again. In the meantime, I’ll be quite susceptible to infection and disease. Wonderful.
So, at this point, that’s about all we know. We don’t know when all of this will happen, how many times it will happen or how long I will be down each time it happens. Plus, we’re not even completely certain the new doctor will agree that this should be done at all. I trust my doc though, so I’m getting ready for battle.
So we had our first game of the season last night, against the same team we played first last season. I don’t recall how we played against them last time as I was having troubles of my own, but this time we definitely played better. We won 6-3 and I was +2 for the night (3 goals for, one against).
I think I played my best game ever – even counting when I was deep into it and in shape in San Francisco. I was not only thinking and skating hard, I was actually setting up plays.
Let’s see, what all has happened in the past… holy crap! Twenty five days? Wow, I suck.
The hockey season finished with my team missing the playoffs. We actually had a mathematical chance of making it going into the last game. If the team above us was beaten and we won, we were in. Sadly, they won and we were beaten, something like 12-4. To make it even worse, we got the first four goals of the game. Oy. Well, the new season starts this Wednesday, so we’ll see how the team looks this year.
Cancer-wise, my PET scan is this Friday, and we’ll find out the results next week, along with where we go from here. My bonus end=of-chemo present finally arrived on Thursday. Barb had a t-short made for me with my “Cancer is my bitch” slogan. Sadly, we can’t wear t-shorts with writing at work, or I would’ve worn it Friday. We had a Queen’s Night Christmas party on Saturday, so I wore it then to rave reviews. I’m almost done with my bumpersticker design, so hopefully I’ll be able to order those shortly.
I’ve been feeling pretty good, being chemo-less and all, but I think my body was expecting a treatment last week. I had many of the lesser symptoms through Friday, even feeling a touch of the chemo tiredness at one point. Stupid conditioned body. Hopefully this week my body will finally realize the chemo is over.
Oh, and I’m putting together a little list of Hodgkin’s tips to help out the people coming into this after me. I’ll have a link on the left side of the page to it, just in case you need to reference it further down the road. At the moment, it’s kind of ugly and unreadable, but I’ll eventually get around to making it pretty. Right around the time that I redesign the site, post the house photos, post the wedding photos, the past few years of birthdays… Oh man, I’m feeling dizzy.