Starting Chemo April 2009

No, Titan, I'm never bored. I always have stuff to do -- my problem (since BC) is being too ill or too tired or otherwise whomped from illness and/or treatment most of the time to do it, or to really and truly fully enjoy it when I can muster up the strength. And I underestimate too. I had figured that since I'd finally mustered up enough energy to clean the upstairs of my house, I'd be OK for the SCA event too. Uh no, not quite. I got to enjoy some, and Sir Ivar's knighting ceremony was cool as hell, but I couldn't walk around or stand much so I also had to miss a lot of fun I would have otherwise had. :-P

Oh, and speaking of "too ill," guess what. Just got back from my oncologist appointment (well, OK I'm at the laundromat; my Pack Rat put the laundry basket in the trunk for me so I could do wash while he went back home to "go to work"). Once again, my original dismal gut instinct was right. I DO have the dreaded peritoneal metastasis, and since I'm looking  9 months pregnant with the return of the ascites -- put on 20 pounds in a week and a half and since I have a very reduced appetite, I know I'm not getting fat from overeating. Since the stents are holding my ureters open (excretory system fully online), we know the ascites is not from kidney failure this time), I'm going to have to get the paracentesis to drain it. Since I won't do aggressive chemo again because I have zero QOL on it, I am now running into the end game, including a projected expiration date range (6 months to a year and a half; two years tops) -- and that's only if I can tolerate some "gentle" oral chemo (she promises no brain death, no nausea, no hair loss) she wants me to take, and my Pack Rat, sitting right next to me, said he wants me to take it, so OK I said I'd try it (methotrexate and cyclophosphamide). We weren't expecting such a rapid decline (the ascites and not just a couple, but a whole bumper cropload of skin mets) so the original plan of just going on Faslodex won't cut it: she says Faslodex takes "too long" to work (3-6 months, and I have a DEFINITE expiration date of 3 months with no treatment at all, or what would amount to no treatment since it takes so long) so that's why the M&C, but IF I can tolerate the M&C and it works, it's possible to add/bridge over to Faslodex in 3 months. 

Ummm Hmm, well how do you like THIS one -- my Pack Rat JUST called me on my cell phone to tell me that his boss "insisted" that he spend the day with me today instead of working... I guess that means my Pack Rat probably mentioned how I now have an expiration date.  So anyway, shortly after I get home from the laundromat and pharmacy to pick up my meds (one of the chemos plus a diuretic to take as well), he'll be coming over. I wonder what he has planned......(I didn't have "energy" last night, but maybe he'll somehow wake me up? yeah right we had to be up at 6 AM so I could be at the cancer center for 8:15 labs prior to seeing the oncologist...)

Well, you all must remember my saying "way back when" that I KNEW this was going to happen from the very beginning, from the instant I first discovered my right breast had turned into a "rock."  So let "It sucks to be right all the time!" be my epitaph.

OK gotta go check my patient online page to see if they scheduled the paracentesis yet... 

Helen, 

Please try not to feel bad. I'm a REALIST, remember? And I do NOT have that "fight fight fight" philosophy where BC is concerned -- I never did, and in fact I've always hated it (maybe I really should post that "World War IV" post I wrote a couple of months ago). OK, though, so if you're going to use those "fight" terms, then know this: as far as I'm concerned, this is a battle I cannot win, and I don't even care to try. I don't want to waste what time I have left by haranguing and pestering my doctor and being on that upsy downsy crappy hope for nothing try this, try that and more nasty side effects and still go nowhere but to the early grave anyway treadmill. Yes, I really DO feel that way about "hope" for someone like me being nothing but a big crock of bovine feces. The ONLY thing I'm interested in now is the best possible QOL for however much time I have left.  Oh, and by the way, I am GLAD my oncologist here is straight up with me -- the oncologist I had originally wasn't and that bothered me as just much as his failure to take me seriously when I had side effects and questions about my treatment.  So now I have time to plan certain things, and hey, if somehow I actually do manage to exceed the expiration date a little, well then, so much the better (if my QOL is decent, that is), right? 

(LOL I know, tell you all how I REALLY feel, huh?)  ;-) 

LENA - I can appreciate, given your personality, that you crave hard facts and no sugar-coating from the doctor. I'm not sure what my desire would be if I were in that situation. But I am glad you have an onc who levels with you in the way you request.

As you are a beloved member of our little group, this is painful for all of us. Know that you are valued and loved and we all will do anything we can to help along the way.

If QOL is truly your most important goal, then I wish you a great QOL today and every day. In fact, i wish that for all of us!

And please give Pack Rat a hug from us. I consider him an honorary member of our group (I hope it's ok with everyone else for me to say that).  

Amy 

<sigh> Lena - You are a master at saying what you feel and I have come to have a great respect for that. Of course we are all upset; for me it is because I have really come to value our virtual "friendships" here, and you, along with all of our group, know more about my deepest feelings, fears and hopes than my own family does. So, when one of us is dealing with something like this, it hurts all of us. I wish for you what you wish for yourself.

Sending Judy (((Hugs))) to you

{{{{GREAT BIG CYBER-HUGS TO ALL OF YOU}}}}}

Thank you all so much for your understanding.  Me and my Pack Rat spent the afternoon taking a ride through Vermont -- he needs to be there tomorrow (Sat) at noon to buy a part for the Samurai he's custom building, but since so much of Vermont is still a mess from Hurricane Irene (and he was almost certain the road he'd normally have used to get to that part of Vermont would be totally washed out), he had been thinking it would be a good idea to drive a "dry run" of a different route. So he suggested that since it was a beautiful day to go for a ride, would I be interested, and I said yes. He turned out to be right about the road he wanted being closed. His alternate route works, but we did get slowed down in one area where they were doing construction, and saw a good deal of the remains of some houses and cars and mud from flooded out areas. That was kind of scary looking, but all in all, the ride was beautiful. We stopped at the supermarket on the way home and I picked up stuff to make an Italian Rainbow for dinner.  Haven't made one of those since, hmmmm, maybe a week or two before going to the hospital with kidney failure and then the rads. Haven't lost my touch though; it was delicious, and so are the leftovers (almost gone already!). And there were "evening festivities," too. ;-) He was doing what he used to call "winding the spring" in the "old days." I only wish I'd been better able to breathe (the damn ascites is really in the way of everything), and that my hip hadn't chosen that time to hurt (the iliac met itself healed up, but left enough damage to the bone that I still have occasional pain there). We had fun, but had to be careful.

Tomorrow morning -- he had already invited me for the "real" ride to Vermont to buy the transfer case -- we're going out to this diner for breakfast, then to Vermont again.

Betsy -- OMG that's awful about having to have the uterine biopsy! I hope it goes OK. Hopefully what's left of my brain will remind me to be sure to come back here on Tuesday to find out how you did. That's GREAT you're on vacation at least! I hope the rest of it (other than having to have the biopsy and possibly get paranoid waiting for results) is nice, relaxing and you unwind completely. And yeah, I'll do what I can to hold on for my Pack Rat so long as it doesn't finish killing what's left of me before I actually die, if that makes any sense. Remember, if it hadn't been for him I would have declined treatment in the first place so we wouldn't be having this conversation now! LOL

Amy -- I didn't see your request to hug my Pack Rat for everyone until now, so I'll have to save it for tonight or tomorrow. He's gotta leave on Sunday to go back to CT for his monthly week of working in the office so as usual he's got a lot to do at home before he goes. Our plans for tomorrow are on, but tonight is tentative. I'd asked him Wednesday night after we wore each other out, "Could I possibly tempt you over here Friday night with an offer of chicken parmigiana for dinner?" LOL he said maybe. I understand if he can't (and told him I won't be upset if he can't make it, but just "had" to ask at least) -- in which case I'll finish the Italian Rainbow instead, but we'll see.

OH! One of my little canteloupes came off its vine a few days ago. I put it in my kitchen table fruit bowl to let it get ripe and had it for dessert last night. It wasn't as sweet as the "regular" canteloupe I buy in the supermarket but it wasn't bad either. And since the weather says it's going to get down to freezing tonight and tomorrow night (hence frost for tomorrow and Sunday mornings), gotta pick all the little green grape tomatoes today and hope they ripen in the house. Several gardening sites I Googled say they should be picked before frost and most will ripen (and taste ALMOST as good as vine ripened); that I'll probably only lose a few to mold or rot, but if I leave them out in the frost, I'll lose all of them, and that would suck! Even though they're all green, there must be enough of them to put in three or four, maybe five, salads! . . I had been hoping the frost would hold off until they could ripen on the vine, but this is New Hampshire, after all! You know, that place where you Live Freeze and Die! Gotta check and see if cucumbers will make it or not or if I have to pick them today too.

Have a wonderful weekend, everybody.  :-) 

Betsy, hope the test is easy and that you get clear results very quickly. 

Judy, you are starting to sound more like yourself - I know it will take a long time to make a complete transition but seems that you are getting there. Are you in Tel Aviv?

 Lena, always good to hear from you. 

Amy and Titan - we'll need pics and detals from the weddings.

I am enjoying my stress free life. Even though there are always going to be little stressors - nothing that I can't handle now as opposed to what things used to be. Weather is still nice so I'm trying to get a long walk in every day. On Tuesday I see RO - one of our regular appointments. I alternate between her and the MO every few months. I guess this is part of all of our lives. 

Hi Judy, it's good to hear that you are reconnecting with friends and that they want to be part of your life, including the bc. When I was in Israel a few years ago, I stayed in Hertzillia (did I spell that correctly?) but also visited a couple of communities close by as well plus a visit near Haifa. Visiting all my cousins there.

Hi everybody.

Wow, I wasn't thinking of what day it was when I came in here, but, it's Tuesday. That being the case:

BETSY!!! How did the procedure go? Do you know when you'll have results?

Helen, I'm so glad to hear you're still walking. As you can probably tell from my disappearance from the 2011 walking thread, I just haven't been able to do it even though the weather here is still good for it, mostly (OK, today's rainy, but the last couple days were really nice).  I'm not AS tired as I was during rads, but now with the ascites it feels like -- this is going to sound real weird I'm sure -- like my insides are all being jounced around when I walk. That and getting short of breath. Well. Two more days, I think I can hang on till Thursday. I'm having the paracentesis then, so they can drain this shit out of me. They managed to fit it in with the procedure I was already scheduled for -- the nephrostomy tubes have to be changed (yes...this is going to be regular maintenance...). :-P

Amy, OK, I hope this makes you laugh as much as it made me laugh. On Saturday morning, yes, my Pack Rat and I went out for breakfast and then to this guy's house in Vermont so he could buy the parts for his Samurai, and I finally did remember to give him the hug and pass on the message. It went like this:

"I need to give you a big hug, for me but also for Amy in my chemo group."

We hugged (a great big one as far as my ascites would allow), and then I told him what you'd said about considering him an honorary member of our group. His reply was "That doesn't mean I have honorary CANCER, I hope!" 

(I know he's weird, but that's his CHARM!)

So the family problems concerning the wedding are sorta beginning to straighten out a little? That's good.

Good luck on the run -- and be careful of your heart (you sure it's really OK to be doing this?). Wow... it just occurs to me that I haven't been ABLE to run since 1993. That's more than a decade and a half, isn't it?

OK, gotta go, just wanted to pop in here for a few minutes.

Betsy, so glad the procedure is over. I've had polps several times and had to have them removed so I understand what you are going through. Mine always came back b9 so wishing the same for you ....let's hope that's one experience that is completed. 

Today I saw RO for a regular appointment. Didn't actually see the regular RO but the resident.  She was very nice, very thorough. Anyway, everything ok for now. Although I will never feel confident.  

Hi all,

I did have a very good night sleep, even after a two hour nap yesterday. I'm so glad I didn't have to work. Today I'm feeling refreshed. 

We are going to drive to Mt. St. Helen's Windy Ridge Observatory today. It's one of those things I've wanted to do for ages. The weather looks good, high clouds this morning but they should blow off by this afternoon. My college roommate grew up in Toutle (very close to the Mt). We went camping, actually took over an abandoned ranger station for two weeks on the Mt. after we graduated in 1980. None of that part of the mountain is there any more.

While I was sleeping yesterday my dh built me a raised blueberry bed. I have three plants I hope to get in the ground by Friday.

Lena...I forgot to tell you put those green tomatoes in a paper bag. It helps them ripen.

 I'll be thinking of you on Thursday. I hope your procedure goes well & don't forget the lorazepam!

Hi all,

I have been keeping up with posts, but getting home late from work and not having the energy to post. 

Betsy - glad your procedure is over and hoping results will be good - when do you hear on results?

Lena - thinking of you and I hope the paracentesis wasn't too bad and gave you some relief from the fluid build up.

Judy - you are sounding more like yourself - I guess that things are starting to settle down after the move.

I know I am not addressing everyone by name, but I am again so exhausted that it's all I can manage right now.  However, ALL of you are always on my mind!

Geri, good to hear from you! I hope you have a restful weekend.

Amy - you are amazing! Well done! It must have been so emotional for you! Hope you rest up this weekend too.

I hope you are all doing ok.

I too am exhausted, wishing you all a fun weekend, hugs as always, Judy x

Amy!!! I'm just glad you SURVIVED that run! I know you do hard workouts so are in good physical condition anyway, but WOW. Question: do you still feel purged of your BC experience?

Updates --

(1) Yesterday's paracentesis was a success -- they did it just right! And yeah, I remembered to take the lorazepam! LOL Well much to my shocked and happy surprise, they remembered to use the lidocaine before setting up my IV and even waited a few mins to let the lidocaine take effect to get the IV into my arm, and then they sent some Fentanyl (this is a VERY strong painkiller) through the IV, which took full effect prior to starting the actual procedure.  The ONLY pain I had at ALL was the stick/burn of the lidocaine going in (but that was brief and well worth it because IVs hurt me like hell without a lidocaine prep). I did not feel them insert the draining needle or feel the fluid draining at all! If only EVERY invasive/painful but not usually general anesthesia strength procedure could go as well as this one did! I'm going to have to remember to tell all my doctors about this when I get a chance, so any time any of them ever has to order painful or invasive treatments for which general anesthesia is not normally used, they can have me set up like how it was for the paracentesis. Today my puncture site is a little achey but not bad. I definitely feel much better WITHOUT the ascites! They drained 5 liters of fluid (which looked like apple cider!). That's just a little over a GALLON! I had weighed myself yesterday morning before going for the procedure (I still weigh myself every morning even though I'm no longer weight loss dieting); scale said 128.2 pounds. Then the nurse suggested I'd find it interesting to weigh myself when I got home from the procedure, so I did. Scale said 119.4! WOW! I'm still wearing elastic-waist bottoms today; I tried on a pair of jeans and they fit again, but they hug a little too closely to the puncture site for now. So maybe in a few more days. But at least I can bend down and pick stuff up without the swollen abdomen getting in the way, showering is OK starting today, and I almost look presentable. 

(2) Still having issues with Medicare and my "gentle" oral chemo. Supposedly this will be fixed on Monday or Tuesday when Dr. C is back at MY medical center to rewrite the prescription! (she practices at several facilities) Talk about stupid: Medicare Part D rejects the cyclophosphamide, then I find out on the Medicare website that Medicare Part B will cover it -- but they need a diagnosis code whatever the hell that is -- and they won't take this stupid diagnosis code added to the prescription from anybody but the doctor, not even one of the doctor's APRNs just adding it to what the doctor already wrote. So why in the hell can't the Medicare Part D folks and Part B folks resolve this kind of stupid ass crap between themselves instead of dropping it and forcing the patient to deal with it? (Never mind, rhetorical question.) 

Judy, I hope you're not exhausted anymore, so you can enjoy your weekend.

Geri, I hope you get some sleep or whatever it takes for you to stop being exhausted too.

Betsy -- yeah I did put the little green tomatoes in a paper bag -- with an apple, to increase the ethylene concentration. They're just starting to get ripe now. And, how did you enjoy Mount St. Helens? I hope it didn't erupt again while you were there! Did you get your blueberries planted? Blueberries....YUMMMM... :-)

Helen...since this particular bout of cancer wasn't your first, I totally see why you wouldn't be able to let your guard down again, even when doctors tell you you're OK. But now tht you saw the RO, at least you're free of doctors and treatments for NOW, aren't you? If so, ENJOY IT WHILE YOU CAN.

Gotta go.......see you next time. 

Amy - congratulations on your run.  I am in awe of anyone who can put that kind of determination into something they don't even like to do.  I totally understand the overwhelming emotional response - I went as a company representative to the local breast cancer walk kick-off breakfast, and I have been there for many years before bc diagnosis, even the two years after being diagnosed.  However, this year something that a speaker said really hit me hard, and the whole experience came rushing back, I got all choked up, and had to excuse myself to get my composure back.  Now I'm a little concerned that the same emotion may overcome me at the actual walk with my company team on Oct. 16th.  If you remember, when I was going through treatment, my boss and the whole company were absolutely wonderful, and they have taken bc on as a company effort since then.  I think when we have a little distance from diagnosis and treatment, the magnitude of what we have been through finally hits, hence the emotion.  Just my interpretation.

Lena - been checking here a couple of times a day since yesterday to hopefully see just what you posted - that the procedure wasn't painful and that you got relief!  So glad for you.  With what you have been through, you should write a "how-to" manual for the docs.

If anyone is interested or up to it, I saw a preview of a TV movie directed by Jennifer Anniston which is being shown on Lifetime on Oct. 10th (didn't say what time).  The title of the movie is "Five" and is the story of five women facing breast cancer.  May be a downer, so I'm not necessarily going to watch, but wanted to pass the info along.

Lena - taking your advice and concentrating on making this as much of a stress-free weekend as I can and hoping to get some much needed "good sleep".  With that, I shall say good night!

Betsy, have a wonderful trip -- enjoy every day. 

Lena, you are amazing. I am pleased to hear that you feel better -- what an amazing amount of fluid.

Amy, I am also impressed with what you achieved on that run. You're an inspiration.

Geri, that movie does sound interesting but I'm also not sure I can watch it. It depends on the angle. If it's all pink and fluffy and awareness, I'm not interested. if it's real, well maybe.

Judy, hope things are continuing to improve for you in Israel.