steroids -- and taste changes

Today I took steroids in preparation for my last dose of chemo (last of this series, and in my dreams the last I will ever need.... though I don't want to jinx myself on that score... especially as I would rather have more in the future, if I need them -- I would just rather not need them.) Anyhow I noticed a change -- in my base energy level I think, but I didn't really get it that that's what was going on til I took the steroids this morning and felt like my old self again rather than steroid buzzed in a bad way. It's chemo fatigue I guess, cumulative effect. I haven't been that tired -- of I would have figured it out before -- just kinda drag-assy and not as up for stuff as usual. How I have been feeling is how most people look like they feel most of the time. (Course it's possible that most people actually have great energy like I usually do and are just better at containing it. I mean they couldn't be a whole lot worse..... :-D However, this is not the sense I have gotten after 45 years of it.) Anyway I got it today when, after taking steroids, I felt like my old million dollar self. Previously I'd already felt pretty much like that and the steroids had put me over the top -- made me jittery and bossy and unable to sleep.

We have yet to see about THAT-- there might still be a sleep problem for all I know..... but I did take a naplet this am after I took the first steroid dose (4mg) -- which I would not even have attempted before, but as I was working on this theory I thought it worth a try. It was a short one, maybe a little under an hour. I did actually fall asleep, which surprised me, and I woke up rested -- which I haven't been doing after naps lately. Lately I wake so dead tired, worse than before the nap, that i have been avoding napping and drinking tea instead (caffeinated, usually green.) I think it's not just cumulative chemo effect -- I also am tired at this time of year more, and gain weight at this time of year (which I have, a little, now, too.) I think the weight is partly because I exercise less -- can't do long bikerides when it's really cold, and can't bike at all if it gets snowy and icy. I still work out for an hour at least 5 days a week, but when I bike it's longer -- like 3 hours, sometimes a good bit longer in the summer...... Now I'm riding between 30 and 40 miles at the longest, and that's standard for winter because once you sweat, your sweat gets cold and after that it's not so much fun anymore. In spring there will be rides over 50 miles. In summer there's usually a 60, an 80, and sometimes after that a century -- or one can be arranged. (I only had one summer where I did all of these, the one before the BC diagnosis. I meant to do it again, but...... Anyway I will do it next summer, unless rowing* interferes. I doubt I will let that happen though.)

Meanwhile, I will see how long the chemo fatigue lasts. I am thinking less than what I have heard about, because that's how it was before surgery, after the first two rounds of chemo. However, it might last longer than after taxol and before surgery, because there may be a cumulative effect including some leftovers from the first two rounds.

I have three weeks between tomorrow's last dose and the start of radiation. Well more like 2.5, because I agitated for sooner and the radiation onc said that would be okay. So Monday 2/9 I start rads. There will be scheduling issues and also insurance issues -- I have to find out if the "boost" the doc told me we might do at the end is cyberknife. If that's what it is, even one day of it will mean we have to cobra so we get radiation covered by the fabulous insurance Alan had with his last job (and we CObra'd for January) rather thay paying a percentage after a deductible, which is the deal with the new insurance. (I am pleased that I had the radiation planning appt -- the simulation -- last Thursday. Under the old insurance! A lot was done then.)

As for the scheduling issues -- Joan suggested I ask the biking Babes about starting rides later for a few weeks. Sometimes people like to do that in the winter anyway, so it is mainly the first 3 weeks in March I am really asking people to put themselves out. Rides usually start at 9:30, but some start later in winter to allow the sun to warm the day up a bit. (And during code red days in summer they often start at 8:30.) If rides started an hour later I could make my radiation appointments at 9 and make it every day without too much craziness -- or at least the craziness would all be after everyone had left. I will try that.

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*I'm joining a breast cancer survivor rowing group. (Upper arm workouts, finally -- yay!) Generally the only upper arm workouts I get are pushing the push mower and shoveling snow. Have had none of either of that for months now. NOt that I'm complaining about the lack of snow -- snow sucks here because they don't shovel it or put salt or sand down, so driving is very scary --as opposed to Boston/Cambridge/SOmerville, where they take such good care of it that I never gave it a thought except for parking issues, which are always an issue there anyway, so what's new about that? I had just started lifting hand weights when I saw a fitness oncologist -- who told me that I should stop, before surgery, and not start again. Apparently some of the lifting is bad after the loss of lymph nodes and can cause lymphadema (swelling in the arm, sometimes elephantine.) I will find out more about this when I see the lymphadema PT in early February. (Yeah that I would have gotten better reimbursed via the old plan -- but Mondays are the only day that works, and I want to leave next Monday & Tuesday mornings clear for napping. I can always do stuff if I'm feeling energetic -- but no appointments. (I might swim after napping.... it would be smart if I went early! MOre likely I will walk, with Pinky.)
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The other thing I wanted to report on is taste changes. It's interesting to see this become an issue this late in the game, but it's good too -- because I can see the light at the end of the tunnel even as I am going into it! However... oranges are really out; I should stop buying them and give up on tasting them for the season. Hope the kids & Alan eat the rest of the box I got. (They won't.) Or maybe we will get some orange loving visitors.... (anyone?) HOwever I have noticed now that a number of other foods don't taste right -- pasta, grapes, apples -- I think tart is a problem (or high vite-c foods) for me to taste. Avocadoes are starting to go.... What I mean by not tasting right is that I can partially taste them, but part of their taste has gone bland for me...... it's not like something different -- I might have a shot at talking myself into something different as some new exciting thing -- but this is just less. In the case of oranges it's too much less. Maybe in the case of all of them. Dates too, I noticed the other day - I had started buying fresh dates as the sweet thing to eat, since so much of the fruit I want to eat is untasteable. But they.... either they don't taste right either or I'm just done with them -- not sure.

The tasteless food list is not complete; there is enough food that has become tasteless that I have started making a list of foods that still taste right to me. Guavas, bread, chocolate. Maybe veggies and cheese. Salmon! (Luckily I still have some left from that big box of wonderful canned salmon!!) Guavas I usually don't buy many of because they are like $3-4.lb, being tropical fruits. But I will now. Bread I am not excited about unless it's from Great Harvest -- so I will try to get there next week. (Friday's ride doesn't go there.) CHocolate is pricey because it must be sugar free -- but I have some, and I can make brownies too. I still have barley malt (my sweetener of choice)... I have about a quarter of the last 10 lb brick that the powder I got the year we moved here turned into, because of the humidity. (It works -- but using it involves a hammer and screwdriver to chisel, and double boiling. I have to be motivated!) After that I don't know..... the Takoma Park coop guy said he would probably not be able to get me barley malt powder again. I will check. The other way to get it is from my old coop in Cambridge -- either I would have to time that order or see if a MA friend could pick it up for me and keep it til I come visit.

I think I can still taste PB&J okay. The India SPice Tea I've been drinking is starting to taste bland. I think I'm going to keep drinking it anyway -- or maybe earl grey decaf will work better. No more mate since the diagnosis -- Alan discovered it is linked to cancer in the indigenous populations in SOuth America that (who?) drink it all the time. Liver cancer I think it was -- but you know, who needs more cancer? Plus, I have discovered I have a family history of liver cancer. Distant -- exactly as distant as my history of breast cancer -- same grandma's other sister. So.... good idea to try not to trigger it, to the extent that I can see my way around that landmine....

Well wow -- those of you who got to the end of this get kudos! See what I mean about the steroid making me jsut like my hyper old self? Babbly! :-)