For Linda

lindaprocopio said:

Diane, you aren't butting in; you could never 'butt in' with me! I need everyone's input and any 'virtual second opinions' you can get from your own oncologists are VERY welcome! I'm not leaving this Board either. It's just that this is WAAAAY too busy a time of year to have cancer! Maybe I SHOULD have waited until after Christmas to start my chemo. I don’t have my tree up and still don’t have the ‘wow’ Christmas gifts bought yet for my grandkids, and Jakey’s playing basketball now and my girlfriends all want to schedule our ‘Christmas lunches’ where we exchange our gifts (none of which are wrapped and none exactly what I’d feel good about giving). It’s so important to me now to ‘make memories’, and yet with the weekly treatments and all the other activities, I don’t know when I’ll have time to bake cookies with the kids or make gingerbread houses, yet alone go shopping to get the ingredients. But I’m afraid to wait and do NOTHING until after Christmas.

I think Christmas coming played into the decision for the 'taxol only' for 4 weeks. I was given the option of just waiting until after the holidays, and I think part of the 'taxol only' decision for the 1st 4 weeks was a 'quality-of-life' one. My oncologist seems to feel that the weekly taxol is enough to hold the cancer in check within the lymph nodes, and weak enough that I won't feel sick at all. And it just MIGHT be enough to knock my CA125 down and shrink those nodes. If I don't make any progress after the 4 weeks, we'll be switching to a new chemo drug, or by then it may have been enough time for them to add carboplatin to the taxol. (They like to wait as long as they can to re-use carboplatin so that you don't get platin-resistant and they lose that option. My gyn-onc feels 6 months from last chemo is enough; my chemo-onc likes to hold out longer if he can. The other concern is that, with all the radiation I had, my bone marrow (platelets, WBC & RBC) may tank quickly when I get carboplatin again. It's been 9 months since I finished chemo (March 26) and 5 months since I finished radiation.

So, I'm start chemo on Monday (2 days away), with the hope that the low dose of taxol won't make me sick, but should start shrinking those swollen nodes and hopefully hold the cancer to just the nodes and no organs. Doxil is anothert possibility if my CA125 doesn't drop after 4 weeks of taxel. Doxil is given every 4 weeks, but has side effects like very painful palms (like skin chapping) and the bottoms of your feet can get very sore. The plan is balance ‘quality of life’ with holding the cancer in check, and they try and keep the chemo as light as they can now that they aren’t even trying for a cure any more.

I didn’t really have any recurrance symptoms that I can put your finger on. I did have a tiny discomfort in my armpit sort of like you feel when you graze yourself with the side of the razor when you shave. But it really was painful when I had to keep my arms over my head in my PET-scan for 20 minutes so they could scan me under there. And last night my armpits hurt enough that I couldn’t lay on that side to sleep. I had the grandkids overnight and then took Jakey to his 10am basketball game (He scored 4 of their 12 points & they won!) After they went home from the game with their dad, I came home and called the weekend ‘oncologist-on-call’. She pulled my PET slides and said that the pain was likely from the inflammation around the malignancy, and that the pain would probably get WORSE after the first couple of chemos, and then the chemo would start knocking back the node and the pain would go away. And when I am at my laptop for a lot of hours in a row working, my torso would hurt almost like I’d done too many sit-ups; it felt like muscle pain under my rib cage. I attribute that to leaning forward to see the screen when it’s on my lap.

Someone asked about other women in recurrence. There was just 1 who contacted me and I’ve already forgotten who it was (name). She used to post about her mother who had UPSC. The email I got was that her mother had recurred but she didn’t want to scare the women on the Board with that news. It wasn’t like there were dozens of recurrances that weren't posting or anything. So please don't build too too much into the few recurrances we have had on this Board. We have far MORE ladies in disease-free remission, FAR more! Remember that!

Doxil can ONLY be given with a port. Even though I am starting out with just taxol, I didn’t want to wait until my white counts and platelets tank and then try and have surgery for the port. So I am getting a port next Friday. It’ll make it easier with the weekly treatments. I was so happy I made it through the initial chemo with no port, but I think I really need to bite the bullet this time.

Love you guys. I am just so sorry that I have frightened so many of you. This will NOT happen to you!! Okay???



The more ‘normal’ I act, the better my family does. They were all soooo pitiful at first, so many tears that you’d think I was already dead. But busy life almost immediately came to the rescue, and there simply is no time for any of us to dwell on this. The boys have a million decisions to make in order to take over my business January 1, and with all the kid’s holiday things, I think they can all avoid thinking about this. The grandkids both curled up with me in the big chair and watched ‘Monsters VS Aliens’ last night, one on each arm. My underarm was KILLING me doing that, but it was something we all needed; no talking about it but just reassurance that things haven’t really changed yet. Emily asked me as her tucked her in “You’re always gonna have cancer now, aren’t you?” and I said “Yes, but you can see that it’s not really any different now than before we knew. I’ll just be bald again.” And she said “And then you’ll get that soft fussy crewcut again; I love that softy hair!” And she was fine with it.