looking at the end of chemo....

I just finished chemo a week ago. I have read that however long a chemo patient is tired while on chemo, s/he will be tired for that long again after it's done. I was tired at the end there..... the last 3-4 weeks, maybe? HOwever, it wasn't all the time, just more often than usual. Like some days I would go back to sleep after the kids and Alan had left for school and work -- if it was a day without a bike ride or chemo. I feel more energetic just after one chemo-free Thursday. However, I still want more sleep. (Yeah I'm going up to bed, right after this.)

Anyway on the days that I'd nap in the morning I'd set my alarm to I could make it to the midday swim. I’d fall into a deep sleep accessible only in the morning, it seems, and when the alarm would go off (two hours later!) I’d be completely wiped, no interest in waking up. (that's chemo, not how I usually awaken from naps.) I always made myself, though, and until maybe the last week or two I always felt better after I swam. Maybe it was just the last week that was a struggle. There was one day (just last week) when I didn’t make it to swim, and walked the dog instead – for an hour, a good walk…. But the swim I had meant to catch was ending about when I started the walk; it was a matter of needing more recovery time.

That was the day after I had taken the morphine on an emptier stomach than I realized…..I felt still full from a snack I’d had an hour or so before, but I woke up so nauseated the next morning that I couldn’t help with the kids….. and then by the time I woke up again from the nap I probably had low blood sugar too….. At least I had thought to have Alan put some food by the bed for me before he went to work so I could get something into me before I got up and got nauseated again. However – that whole problem was because of mismanagement of meds (I took it on an emptyish stomach) and preexisting problems (tendency to get low blood sugar.) The main thing that was chemo related was the fact that I was taking morphine in the first place.. And by the way – I was taking it not because the pain I was feeling was so severe. It was flulike body aches that I had (still have, but less now.) The problem was that I had flulike body aches for about 6 weeks. I’m not sure I’d ever felt anything for that kinda time before…… and lemme tellya, it gets old after about 3. (Well for the first two I was trying to heal myself because I really thought it was some viral thing.)

Anyway, I started to get tired a good month after the body aches started. I can't promise I was tired entirely because of the chemo, though.... ONce school started our alarm started going off at 6am. Honestly I've always fantasized about taking a nap after they’d all left.... I just never let myself until I got a cancer diagnosis. :-D Now maybe I will let myself more often...... I mean, really, getting up in the dark is inhumane.

I always feel bad waking the kids that early. As it gets colder I often sometimes let Matthew sleep later and drive him to school. It's bad on the gas but nicer on his sleep. I’ve been pretty strict with him this fall, though, because he gets into habits and I know I won’t be up for driving him after my surgery. So now we have a deal…. The deal I wanted was no screen time after 10pm on weekdays – I figured that way he’d get sleepy on his own… reasonable, right? Well he didn’t go for it, so now we have a different deal – as long as he’s pleasant in the morning and makes it to his school bus, he can control his bedtime…. The day he grouses at me or misses his bus his bedtime is mine. It’s funny to see him in the morning…. I come in and wake him and ask him how he slept – and he goes straight from being completely out of it to “Huh? Oh -- fine, thanks!” He is really good at it – he can almost do it in his sleep…… now if he can just avoid getting sick…..

last MD visit before surgery

Well she agreed that it had shrunk more, but I don't think she ever considered the idea of giving me more chemotherapy though I had brought it up as a question before, and sent her an email letting her know I would be asking again at yesterday's visit. I'm not sure how I feel about that but there's nothing I can do about it either. It's nice to be done, but I don't understand stopping when it's working just because of a protocol - and mostly it really pisses me off that in the end the discussion doesn't really matter; we do what she says because she's the doctor!

I suppose the protocols really do bind her -- but I would like my wishes to matter here more than they feel like they do, and I would like some recognition that what I do and say matters...... She said that my response to the chemo had been better than expected. Well maybe there is a problem with their expectations -- I expected it! (It IS pretty cool, though.)

Afterwards I went upstairs and visited with my chemo buddies. It was really nice to hang with them. Too bad I booked up the next two Thursdays with medical appointments. I'm going to have to see if I can change them to other days so I can go see the gang again; all but one of them will finish their treatments by the time I'm in MInnesota, and it will be harder to get together after that -- especially since we'll all still have more treatment. (Three of us will have surgery and then radiation in different places & on different schedules. I don't know what happens when surgery was before chemo -- is there radiation after or did it happen already, or is it skipped.....?)

So now I have to make lots of appointments... some with radiation oncologists so I can figure out which one to go to for radiation, and set that up. Also I have to see if I can get a surgeon here who will do my post-op visit so I don't have to go to Minnesota twice. (If anyone has any ideas or recommendations on that score please tell me!) Oh and I have to get a rental van set up for next Friday through Sunday so we can carpool with some other folks to the wedding in the catskills and I don't have to drive all 13 hrs myself. I think the other people in the carpool want to leave before noon, though, and Matthew doesn't want to skip school. He happens to have a half day -- they both do -- and I was hoping that 12:15 would work for people, but they are worried about hitting NYC at rush hour, and that's probably about right. However, it's also true that the high school and middle school teachers here are extremely uptight about missed school........

Meanwhile I'm still tired and would rather put it all off and take a nap -- since I can't go on the bikeride on this BEAUTIFUL DAY!!! My knee went out on Wednesday's ride and I have to rest it and maybe take it to the chiropractor again.

actually my whole right BREAST is shrinking!

Emily and I finally posed for our "before" pictures, she in her "new" bikini that I got her early in the summer, and I in my new bikini that she picked out for me at Old Navy at their end of summer sale -- in early to mid August, that was. I don't know if I wrote about that at the time -- but it was pretty cool, because my right breast was too big for the suit, and I bought it thinking that that wouldn't be a problem next summer, post mastectomy. (In fact the individual bra cups remove, so if I ever wanted to make a statement......) I also kinda like the idea of getting a new bikini before a mastectomy, thumbing my nose at any idea that perhaps my bikini days are over. HOwever, I honestly would not have thought of it; it was EMily's idea, and she insisted I get the suit. And it does look good, and the top looked good on her, too (good enough that she is going to have to, um, borrow it sometime.... ) so it will look okay on a flat chest. AND it was only $10..... :-)

Anyway so we posed for pictures tonight, the plan being that we will do it again next summer (or before, whenever it's warm enough to get the suits out) when SHE has breasts (trust me on this; it won't be long now) and I have only one. So anyway I put the suit on last night, thinking as I did that maybe I should pose in a different suit that look better, since I still have my right breast, which was falling out of the suit top when I tried it on in the store changing room. Well when I put on the suit last night, it fit. The bikini top fit fine on both breasts. My right breast is no longer too large for the swimsuit.... how big WAS that tumor????

In fact it looked so good I felt sorry about getting rid of the breast. I suppose I could have a lumpectomy, but...... I want clean margins, and when you start out with a 7cm tumor, who knows if anything got left behind in the shrinkage? Nah, I will learn to be lopsided.

OKay I will leave off now -- perhaps I will have some real news tomorrow.

feeling yucchy BUT tumor shrinking

I think I'm just having trouble managing my palliative meds.... took the small dose of morphine that usually heralds a great next day (keeps me pain free for a lot longer than the 4 hrs it says) on an emptier stomach than I thought...... This morning I was too nauseated when I got vertical to help with the kids in the morning and poor ALan had to do it all.... and Matthew asked as he left how I was going to pick him up after debate this afternoon. (As if I'd have the patience to be sick all day!) Now the challenge has been getting enough food into me to get out and get at least a good dog walk in.

And then of course I didn't feel well because my blood sugar was down so low -- that's an OLD problem, but on top of new ones it's sometimes a bit hard to recognize. And then it's hard to eat when you feel bad from low blood sugar..... yeah I know that one; happens to emily every morning; that's why we have trouble feeding her breakfast.

On the other hand I finally figured out what my oncologist is feeling when she measures my tumor. See there's still this large mass -- but it's soft, and that's the fibrocyst which has been there for decades. But there's this hard thing on top of it jsut to the right of my nipple -- it's about the size of a kidney bean now -- well maybe not exactly; it's harder to find the edges sometimes than others. We will see how she measures it on Thursday and what she says about extending treatment a few weeks to disappear it.

While I would love to be done I would love a shot at a complete remission more.

Besides -- if there's a delay of 2-3 weeks, I'd get to be here for Halloween, and the chances that my in laws would make it to stay with the kdis while we go to the mayo would be increased..... and my chemo buddies will all still be there for the next 3 weeks......

OKay I'm going to walk this dog now..... we'll do the 4 mile loop. OUtside always makes me feel better.

Last Chemo

This was the real party. We'd planned it. Nancy brought packaged goodies, BOnnie brought veggie platters and came in her pyjamas!!! Christine seems to have been in charge of getting most of the presents. (I didn't know they were going to get me presents!) though one was hand made by Nancy, and she clearly bought the halloween scarf, which Em insists I need to wear no my head on halloween, even if I am in Minnesota. I brought brownies -- barley malt/stevia sweetened, but intense chocolate. They liked them okay -- Joan loved them, and took some home. (Joan and I are food-simpatico.) Barb came too. We couldn't get her an official chemo chair by us, so she walked her pole in and sat in a guest chair. Actually I didn't spend any time in my chemo chair at all yesterday -- I pulled a guest chair over by Christine and Bonnie (who was scheduled for later and had to wait for a free chair -- really it's the poles for the chemo that matter, but there is one per chair or bed.) When Joan came she sat in a guest chair beside me.

I won't give a blow-by blow, but the time went so fast I was surprised when I was done, and not ready to leave. We kept including more people in the party.... Oh and I made peace with the one nurse I had had difficulties with, who was assigned to me one last time yesterday. I don't know, she's just gruff, but she knows her stuff. Maybe the gruff thing is partly a front, like Pat's. Joan got pictures of me with her -- and we finally got a picture of me with Joan!

Christine and Bonnie have 3 more weeks, and Nancy has 4. I will try to get back there on the 23rd when they have their party. Bonnie says it's going to be a pyjama party. She wore her pyjamas to chemo yesterday so I think she means it!

Chemo Party!

It started in the waiting room. I signed in, went to the bathroom and changed out of my sweaty biking clothes into dry ones, sat down in the waiting room, and a woman sat down accross from me, took a look at my helmet, and said "YOu're the woman who bikes to chemo? My boyfriend told me about you." We talked about biking for awhile -- then her boyfriend sat down and joined the conversation. Then I got called, weighed, and told to choose any bed I wanted. (There are chairs, too -- but I find the beds more comfortable -- like having a slumber party in the daytime! Of course I have never managed to nap -- though I have meant to. I even brought earplugs yesterday.....and Honey we had a party! I guess it worked kinda like bringing an umbrella so it doesn't rain....)

Anyhow I got into the room with the beds and my friend Christine was there already with an empty bed next to her -- so I got into it. Nancy was next to her, who I don't know as well but have talked to a number of times. (Christine is almost my age, married with one son a year younger than Emily. Nancy is older and widowed and that's all I know.) Then BOnnie came in. Omigod, I thought I was irreverent.... but this woman was great. She was short and broad shouldered, but when she talked I thought of Vickie. We were talking about reconstruction, which is something I'm revisiting now, more because the time to decide about it is closing in on me than because I want it, I think. BOnnie had surgery and reconstruction before her chemo (which is an earlier stage thing), so had advice for me. She mentioned this surgeon I keep hearing about at Georgetown -- people love him. HER endorsement was funnier than most, though. She said "Oh yeah, definitely go see him. He's very non threatening. He's good. And I don't even like men!" (I guess that doesn't necessarily explain what I like about her. I think it's the unashamed way she presented her unusual opinion. I really like people with in-your-face attitudes, who are so clearly who they seem to be with no hidden agendas..... I like people who don't fit in, too, and who aren't worried about it.)

By the time Joan got there she couldn't find me! I saw her looking around lost and waved and called out "Hey Joan, over here!" ANyone would have thought we were at a peace rally or something, rather than having chemotherapy! (Joan told me later that she came in looking for color, and that's how she ended up over by Nancy's bed. I was in the middle of the commotion ... she was close!

The guy with the girlfriend who started talking with me in the waiting room took the next bed on my other side -- I had thought they'd join the party, but the nurse drew the curtain, and they left it drawn. His girlfriend came to say goodbye when they left, though. She visits from out of state for his chemo, so I think they wanted some quality time together -- and I don't know what kinds of meds he's getting; maybe they makes him sick.

WE (the breast cancer crowd) are all on taxol, which doesn't do anything while it's going in, usually -- and we get benadryl and decadron first, which is a little like drinking coffee after an evening of alcohol.... we're up and down at the same time!

Around the time that Joan came another woman came by, a social worker, who is involved with a group called SOS. I made up words for the acronym (sex on saturdays?) She said it stands for Survivors Offering Support. (She agreed that sex on saturdays is good, too Nancy wanted to know how she was expected to do that, since she's widowed....) I signed up to get a "bosom buddy" (har har har) who has already sent me an email -- so I will talk with her either tonight or, hmm, look at the time, maybe tomorrow instead. Denise, the social worker, said she thought she could find me a survivor who had had a mastectomy without reconstruction, since that's what I want to have -- so maybe she did! I mean, if it's going to look fake and taste fake and feel fake, how about if I just stick a sock in my bra? Or maybe an apple, if I'm going on a bikeride..... I never seem to have enough pockets for all the food I want to bring! (My father in law thinks I should try a sandwich. It would be a funny shape, it might squish.... I could deal with that if I LIKED sandwiches!) What I really want to figure out is how to get a watermelon in there..... I really like watermelons. I guess that would be a bit large, though, huh?

Next week is my last chemo. Can you believe it? JUST when it's getting to be fun! We will have a real party, Christine said, to celebrate. We will bring stuff to share. Maybe I will make something good to eat..... of course if I make what I can eat no one else will like it. Maybe I should just stick a big watermelon into my backpack. It would be cumbersome, but it would fit better there than in my bra! I wonder how long it would take me to bike the 6 miles to Georgetown with that kind of weight in my backpack.......

...and then a Miracle Happened

Last weekend the aches were worse, and/or the advil and tylenol worked less well & for less long, especially on Sunday and Monday. Clearly on Monday I my daily maximum of advil and tylenol would have run out before I went to bed. Last Thursday my doctor wrote me a prescription for morphine in response to my concern about taking too much advil and tylenol in an effort to "get ahead of the pain" (take the meds at the first signs of pain rather than after it has set in) while their effects seem to be lasting for shorter periods of time. I had planned to hold onto this as a backup plan -- but on MOnday night I filled it and took one before going to bed.

I was afraid it would make me groggy and -- oh, sort of take me away from myself. The thing is, I want to function better, not worse, and I was thinking that a heavy duty narcotic would not exactly help with that. I think of morphine as a street drug and an end-of-life palliative. However, it did neither of these things; it just made the pain go away. It felt a little strange at the beginning, but not much. It didn't make me sleepy, either -- in fact I was so happy to be pain free that I stayed up reading for awhile, enjoying the feeling. The pain seemed to be starting to come back in the night and I took another one. (These are low dose every-4-hr pills, and it had been 5 hrs since my first one.) It was still 4 hours until my alarm would go off and I was no longer worried about being too groggy to function in the morning.

And then I woke up and felt fine. Well I was a little nauseous, which I had been warned about, but no pain. I did take advil at 7, and again before bed, and just now. But we are talking about a decrease from 1800mg advil plus 2g tylenol a day to just 1200 mg advil/day. Maybe I will try cutting it down to 800 -- since, after all, the only reason I am taking anything is to "get ahead of the pain," which doesn't seem to be coming at this point in such force as it was. I don't know if the morphine had something to do with it or whether for some reason it just hit me harder at the beginning of this chemo week, so there is less left of it now.

Anyway it has felt like a miracle. Last night I was thinking, gee, this is a pretty good life we have here, when I'm not going around aching all the time!

Having said that.... you're going to laugh at this, but I want to ask all you people sending me prayers and well wishes not to waste them on the aches and pains I'm having now. This will be over in a couple of weeks, the chemo and its associated pains. If I got to choose I'd want them all put all directly into my long term survival and all its indicators. A nicely shrunk tumor, as close to gone as possible by the time they take it out, and no more nodes -- or very few -- would be fabulous. No recurrences and metastases, and how about 40-50 more years of life?

I guess it's a tall order -- but nothing ventured, nothing gained, right?

And now I'm off to go lead a bikeride. 32 miles today, and I should come back with a loaf of bread and have my first reiki session!

Oh yeah -- of course I've had no bowel movements since the morphine. It was worth it, that one time, but .... I suppose this is why addicts inject it, hmmm? BTW my oncologist gave me morphine instead of codeine because it's supposed to be less constipating.