Radiation Burn Return

Of course it turned out that I was in fact sick (surprise surprise! to no one but me, probably.) Perhaps the symptoms mimicked my taxol side effects because my body remembered them, someone said last night. (It sounded more plausible the way she said it.) Yesterday I was clearly better but not quite all the way -- today I do feel all better though. TOo bad we only have a couple more days here.....

I have another new thing, though. Not sure if this is because of the illness or the herbs Lenny's chinese doctor gave me for them (those are the two most plausible guesses so far) but my radiation burn is back! It came back MOnday.

I mean, my radiation was done on March 20th, and it left a nasty looking burn that took a month to heal after that. But still it's been all better for months -- just a little browner than the skin around it. And suddenly Monday night it felt itchy -- so i checked in the mirror and it was red and angry looking! I thought at first it must be because I had stopped oiling it for a couple of days while i was sick -- but I started again and the burn area continued getting worse. NOw it has itchy raised bumps along the upper edge and behind my armpit. I emailed my radiation onc, who is wonderful in person and always responds to my emails right away -- but all he would tell me is that I need to come in. (I knew he would, too......) SO I have to call tomorrow and schedule a visit for Tuesday -- just what I want to do with my time on my kids' first day of school..... and really, what's he going to do anyway?

Aches and Pains in Ithaca

Got to Ithaca yesterday for my first visit here in 2 yrs and almost immediately started feeling achey and chilled. My first thought was, it's viral, but it hasn't moved in the last 24 hrs. Not better, not worse. Like when i was on taxol a year ago. Lenny thinks maybe it's an adrenal crash. Is it possible that could cause the same symptoms as taxol?

I don't know anything about adrenal crashes. Lenny has a chinese medicine practitioner he thinks is great at diagnosing and might be able to help with acupuncture. I'm going to see if i can get in to see her tomorrow or something -- it would be nice to at least have a sense of what this is!

I did bike my first comfortable over 50 mile ride since chemo, Friday, and they yesterday I drove here -- about 320-330 miles. I do have a little sore spot under my back/shoulder bone that started at the end of the drive, but the rest of this feels completely different.

Could it be that I couldn't deal with all the side effects of chemo when i was on it, so some of it waited? THat's happened to me with emotional things before.... I didn't know I could do it with physical things, but if it turns out I did that has kind of neat implications for keeping the cancer away -- or in check -- now and in future!

Rosa Won!

I must have blogged about Rosa before..... she's on my list of "heroes" on the side, so if you want a quick description of who she is, take a peek. I used to bike with her -- but she started training for the senior games around when I started chemo, so I couldn't keep up anymore....... but she sped up more than I slowed down; most of the younger bikers (you know, my age) haven't been able to keep up with her either, for the last year since she started training.

Anyway, lookit this, she won! She didn't believe me, but I told her she might really win!

Rosa Seemann crosses the finish line first in both the 20K and 40K races at the 2009 National Senior Games, the "Senior Olympics," this week. Her times place her fifth overall in a field of 244, aged 50 to 89. She is 72 years old. She will compete in both a 5K and a 10K time trial on Monday. Sr Games: http://www.2009seniorgames.org/ BoB: http://www.babesonbikes.org/

And they say I'm inspiring!!!


Meanwhile --
I'm feeling better. Yesterday I biked 35 miles, walked 3 m of hills with Pinky, and then swam half a mile -- but the big change is, I wasn't tired during or after these things. When I was done swimming I played with Em and her friend going off the diving board. I have never stopped biking/swimming, etc, but I haven't had the energy to play for awhile. (Hey you've got to have your priorities.....) I biked faster on Wednesday, 46 miles in almost the same time as the 35 yesterday (which is why I did more stuff after, yesterday. That and I wasn't tired!)

And now -- one more dog walk and hopefully a swim too, and tomorrow we're off to New Mexico! Back on the 18th.

I'm glad I seem to be getting my energy back before the trip -- but I wonder, will that mean I get restless if I don't get my wiggles out well enough? Might it be less of an issue because their whole family is athletic?

Balancing Act

Went on a hard hill ride yesterday. Lynn led it. Lynn's always been out of my league; I could not keep up with her before chemo -- but she was testing out a new route and invited me and Joan to come with her -- because we hadn't been able to ride with her last Friday I think. It felt like an honor, somehow, so I really wanted to say yes. I like Lynn -- though I mostly know her through Joan and email contact, since I can't keep up with her for long enough to get to know her well while biking. (Now there's a motivator!)

So I arranged to ride Tuesday instead of Wednesday, & made sure Em would have people to hang with on Tuesday. Lynn rearranged her work schedule to do this at 9:30 for us instead of early early, as she usually does. And..... well..... honestly, it ended up being 50 miles of rolling hills in the blistering heat. Joan and Lynn waited for me at turns, because I fell behind on the hills. I got worried pretty early on, because I was tired by mile 5. HOwever -- though I had a hard time going up every hill, and my butt hurt, it wasn't harder going up the hills towards the end of the ride the way it was in Marshall -- it was just the same hard. And on the way home Joan and I stopped at SPokes and I got a seat cover - and it felt SO GOOD not to have pain every time I pushed down on the pedals that I sped up, and did better on the one last hill! SO, apparently the problem is not all in my lungs at the moment, but in my butt as well.

The background to that is, I've been trying a new saddle. My last one chafed on the sides. This one definitely is a better fit -- however, it's HARD. People swear by this kind of saddle, a brooks leather saddle. So I am giving it a try. However, it is possible that it won't work for me. I have a really flat butt, really very little padding on the bones. I mean, I use a sofa cushion on my seat at the dining room table..... know what I'm saying????

ANyway -- yesterday's ride was hard enough that I didn't even have it to walk the dog or swim today. I did walk her to the library and back, ~2 flat miles -- but I owed her 4. I meant to do it tonight, and it is nicer walking late at night than in the hothothot day -- but gawd, look at the time (I don't know what time zone this thing is in -- it's 1:10am MY time.) Tomorrow. I probably would have made it to do more if I hadn't gone rowing tonight -- but I had to leave for my rowing class by 5:30, and I had trouble getting going today. (Rowing is good, and I learn a lot, and it strengthens some of my muscles -- or would if I did it more than once a week, I think -- but it's never hard or fast enough to be a cardiovascular workout.) Rowing was one reason why I thought biking yesterday would work better than today -- my butt has been hurting on the boat after having spent the morning hours on a hard bike seat. It was better today.... however, the trail ride that happened today, which I missed, sounded a lot more appropriate for me. I'm up to speed on the trail rides, ahead of most, sometimes, so no one has to wait for me -- AND I don't have to get left behind. (The ride I wrote about in the last post was an exception; I've done fine since then. It was they who were fast, I do think, now, not I who was slow.)

Also, I did all right last week just walking and swimming, mostly, and biking only once. Marc and EMily were here and I wanted to spend time with them as much as possible -- and it worked. I'm hoping that bodes well for the New Mexico trip...... but we will see. I tried to get Bruce to help me figure out a workout plan, but he didn't really get it..... or maybe I have to ask him a bit further. Thing is, I get the feeling he thinks I'm just worrying, so he reassures me. But I'm worrying only because I don't have a plan, and reassurance isn't helping me because it's a plan that I need. He said I could get up at 5am and borrow a mountain bike and do 20 miles. I suppose.... maybe I could do that once if I got truly desperate. But I'm really not a morning person (I mean I'm REALLY not a morning person!) And I'm still tired from chemo -- mornings are hard. And the hot flashes that wake me in the night mean I probably take more time in bed to get a night's sleep than I used to...... and without a workout they are more frequent......

I would be happy to walk for an hour in the evenings, if there's someone who'd be interested in coming with me who walks nice and fast -- I'm not really going to be comfortable going for a walk on my own in the dark in an unfamiliar place with no dog! And I'll bring my swimsuit & hope for a pool..... He said not to rent a car, but maybe we should. I'm happy to borrow a bike to get myself to a pool or whatever, but distances are further out there I hear.

OKay I'm going to shut up now. Maybe this is a dumb blog post. Well I guess you don't have to read it.....

Falling Behind

I am a little worried about what appears to be a sudden setback in my biking pace. I've been riding in the back for some time now, but except for hill rides I've always been able to keep up with the group -- and I was even starting to ride in front for awhile there! However, for the last 3 rides I had real trouble keeping up -- and only one of them was a hill ride. Today I kept up for the first 15 miles and then I dropped so far back that I couldn't even see the group for the remaining 20 miles -- despite the big break at the bread store at mile 17ish.

It seems odd for me to suddenly be having this trouble. Perhaps it's just the pace of my healing, and the other bikers in my biking club are getting faster and stronger at a more accelerated pace (Joan's theory) -- but I have to wonder, maybe something is not right with me, beyond still-recovering. I am not sure. It does feel like it's the rest of the Babes who have suddenly grown wings, but it always feels like that when I drop back -- even back when I tried to keep up with them on my 20 year old mountain bike. (I know, I know. I was stubborn and didn't believe in the difference between road bikes and mountain bikes.....)

I'm not swimming 45 min miles anymore, either -- and I had recovered that time, post radiation -- I even did a few faster than that. Now I've slowed down again. I thought it was because I'm using the outdoor pool, which is warmer (so it's hard to remember I'm not lollygagging in the tub sometimes....) but yesterday I went with a friend and was motivated to swim fast so I could spend more time with her -- but I couldn't keep it up, the last 6th was brutal, and in the end it took me 50 mins.

I wonder, could the tamoxifen be causing part of this? (ALan's thought.) I hope not -- because I'm going to be on it for another 4.5 years. I think lung damage is a more likely cause -- then I'd have trouble getting enough oxygen to my muscles. Anyway I'd be very interested to hear if anyone knows of any other athletic cancer survivors who had this trouble after the treatment is done. I mean, I finished chemo 5 months ago, and radiation 3.5 months ago -- and I kept up with my biking club better LAST summer, while I was ON chemo. I know, it has a cumulative effect -- but this is a bit more than what I was expecting at THIS point.

Still Recovering

You know, I thought that maybe since I was in such good shape I would recover sooner than I had heard people do. My chemo fatigue was never too bad -- but it's still with me. What I hear is that it lasts for as long as you have had chemo, again. So, gee, I don't know, it could last through this coming winter I guess. Hopefully it will abate by the fall, though -- I get tired in the winter anyway. (I think it's seasonal.)

My fatigue is not bad -- because I have always had great energy -- but I don't have my usual energy now. I'm still biking 2-3 times a week (a total of 70-90 miles), but can't build up to doing a 50 mile ride comfortably, though I have been biking this amount since before chemo without more than a week and a half off at a time (one for the mastectomy and one for ice.) I rode 49 miles yesterday, and that was the first time since early on in my chemo that I'd ridden close to 50 miles (about a year ago) and it was hard! (My butt hurt. I'm borrowing these new saddles from JOan to try out on my bike, & will buy one from her if it works. They're really hard, so I'm skeptical, but they're leather, and I've met a number of people who swear by them -- they say that these saddles get dents and dimples exactly where your butt bones are and they fit perfectly after that. (Could that work? I have so little butt padding that I use a pillow on my seat at the dining room table.... could it be that if it were fitted to MY butt it would work just as well?)

Just so you know what I mean about still having chemo fatigue despite all this biking -- two summers ago I built up to longer and longer bike rides, so that in addition to the usual rides that summer I did a 60 mile ride, an 80, and finally a century. I remember clearly that the main obstacles to doing those long rides had to do with leaving the kids home alone for long periods of time, particularly Em, since she's younger. I did the century while both kids were out of town with Kathy and Ted. (My butt hurt after the century.... I remember that too!)

Anyhow, back to the present -- today I went swimming. I've been tired swimming too, and today I enjoyed it more than I have been, which is a success. (I drag myself through the mile if I'm too tired to enjoy it -- no quitting!) My arm and scar stopped hurting after 13 lengths -- a 5th of a mile. I was warned about the tightness -- it's post radiation shrinkage trying to restrict my motion. It will fail. I think I can conquer it swimming, without the need for PT, though if I need PT I will do that. I'd prefer to avoid it though because aside from the fact that I just spent over $2000 on my mouth, I'm maxing out on medical appointments. I mean even for interpreting jobs I have asked if I can have school meetings instead for awhile. I prefer them anyway, but there aren't as many to be had as medical appointments.

It's hard for me to judge where I'm at in the recovery process because I'm living with myself all the time, but I asked Joan and Rosa what they thought during a break in yesterday's bike ride. (Only Joan and Rosa and Alice and I rode the whole ride, and Alice didn't know me before chemo.) Both Joan and Rosa agreed that I was faster and stronger before, & that I am still recovering. I thought so, but I'm comparing myself to them, and they are not static either..... Rosa is training for the senior olympics! In fact, the only reason why I was able to mostly keep up with her yesterday was that her trainer had scheduled her for an easy week last week. :-D (I did mention that she's 72 or 3, right? My role model.....)

Another Cancer Story

Visited with family this weekend in NJ, for the wedding of a cousin of Alan's. It was great, neat people. There were a couple of old friends of cousin Lois there, who reminded me somehow of BarryGLennSandiDavid. At first I thought they were married, because they so obviously had this longtime relationship -- but no, they were old friends from high school! They were very interesting. It wasn't until today that I found out that the guy had lost his wife to breast cancer. It's such a common cancer, it shouldn't really surprise me; I always know that when people have lost someone female to cancer there's a pretty good chance it's going to have been breast cancer. Course it may be that more people who know a woman with breast cancer know a live one, which is more encouraging -- except that of course their stories are still being told...... so I can't really know what will happen to them either......

Anyway I had heard enough about this man's story to feel for him and his loss while I was hearing the story, but there was also this voice in the back of my head making note of the similarities and differences between my story and the story he told. HIs wife was diagnosed at stage 3, like me, and had a mastectomy and adjuvent therapy -- but the chemo came after the surgery, as it used to all the time. (Now chemo is generally given first when it's later stage, certainly stages 3-4, but even late stage 2. Maybe they will eventually come to decide that it works better to give chemo first at any stage....but the impression I had was that when this woman was being treated for breast cancer the idea of having chemo at ALL was new. But that can't be right, can it?) I had chemo before surgery -- which is a relatively new idea, and probably better. Also different chemos. And finally, it's been awhile -- she was diagnosed in 1980. (But who the hell knows?)

She was diagnosed when her kids were 2 and 7. SHe did all right for almost 10 yrs, but then it was suddenly found to have metastasized. She lived til the kids were 12 and 18. Yesterday I had heard this man's story of losing his father to the nazis in the war, and escaping to the US with his mom, who'd been thrust into single parenthood. Today when I heard his story about his wife I thought about him being thrust into single parenthood too, after he'd moved to a safe place and put together a nice life with a family. So unfair.