Starting Chemo April 2009

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Hi all,

    I wrote a semi-long post a few days ago -- had spent a good two hours on it -- but I got distracted by something (oh yeah my Pack Rat's coming in with pizza) and shut down the browser suddenly, having mistaken the Preview mode for actually having posted.

    Maybe the Ritalin really does only go so far; chemo brain really IS forever. :-P

    I'm not even going to TRY to "restore" the Lost Post because quite frankly I'm too ill and exhausted to even make the attempt. I went from feeling good both physically and emotionally for the FIRST TIME in OVER TWO YEARS -- to suddenly being walloped by what for now I'm going to call the Mystery Ailment. Don't ask me what it is, I have no frickin idea and the doctors don't know yet either. It struck on July 4th, I've been in the ER twice (last week) and got to see my PCP while actually having an "attack" of it yesterday, but I'm only able to say this about it: all the malfunctions FEEL GI-tract related: "gas" pain, constipation, diarrhea. The pain was so bad (it took IV Dilaudid to dispel it) they even CT scanned me for kidney stones, no I don't have that, and no I don't have intestinal contents backed up either so there is no explanation. The days I'm not in pain I feel very weak (like right now for instance) usually. It comes and goes -- feel good enough to do something and I'm wiped for DAYS if I'm lucky (lucky means just weak, little or no pain). Then there's the pain days (yesterday was horrible). Usually the Percocet works now, but of course I'm only able to take that when I don't have to drive. And THOSE days are coming to an end starting Monday because that's when I start rads. So now I can only expect the worst, going into rads feeling like this. Given the facts of the CT scan interpretation and PCP's agreement that this could possibly be cancer related (as in additional metastasis, this time to the peritoneum), now I'm wondering what in hell "good" the rads are going to do. But I also have an onc appointment on Wednesday and my PCP is forwarding all the information (from ER and her examination of me yesterday) to my oncologist and we have to take it from there. Well in the meanwhile I managed to find some time to lie on the couch with my iBook yesterday late afternoon and discover a large number of scientific papers on breast cancer which had metastasized to the peritoneum. So although this is a rare complication of BC,it always, at least in these papers, first presents as GI complaints -- the exact same ones I'm having, in fact. I've gone for a couple of walks this week but am just not able to do it regularly like I'd hoped.

    Geri I was thinking of you ummm, hmmm, one of the last few "good" days that I had, fairly recent maybe earlier this week but can't remember now, but what made me think of you was a Carwash Downpour, the first one this year which didn't come with lightning -- so I washed my car with it. One of the next door neighbors was home (his car was there) but he didn't come out and "catch" me.

    Amy I hope you're feeling much better now and (hm it's Saturday) enjoying your vacation.

    Well it's coming up on a month since Judy's move, but in a proportional comparison to my move, I'm not at all surprised she hasn't posted (I say we should give her until... OK... hmmmm August 1st or so, before it's "OK" to worry about her). But Judy if you've had time to READ here at least, I wish for you the MINIMUM POSSIBLE amount of chaos! 

    Gotta go. I'm still putting away the laundry I did on Thursday -- finally just got around to that NOW (as in today). Every time that tires me, I come in here and write a few sentences as "sit down and rest"). 

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    P.S. I just realized I forgot to mention -- The Orange! It finally turned up (several days ago, under the bed). Shockingly enough it was in good shape so I ate it.

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Hi Lena. LOL re the orange. You knew it would eventually turn up. But I'm very sorry to read that you are not feeling well. I sure hope it's not more mets and I hate to learn you are in pain. Hope the docs can getbto the bottom of it and that it is not cancer related. Could it be something like gall stones?



    I have to admit I've started to worry about Judy. Thought we would have heard from her by now. Amy I hope you are starting your vacation



    My complaints might seem minor in comparison but this is the only place I have to vent. Emotionally, I still feel like crap - despite the Wellbutrin and the shrink I can't seem to pull myself together and I find myself wanting to become reclusive. So I've seen yet one more dermatologist about my hair - lack of hair and now losing more. This guy is an expert in hair restoration. He says the hair I do have is too damaged and too weak to survive a transplant so there goes one more option. He says between the Taxotere and the Arimidex, they both have contributed to the problem - plus being a second chemotherapy doesn't help because the hair does get damaged with every chemotherapy tx. He actually said I may even lose more hair. He says there is a remote chance that there could be some underlying second reasons that might be able to be treated but he wasn't optimistic. But he did a biopsy on my head (I have stitches in 2 areas in my scalp) and he had me do some additional blood work. I won't get the results until late August because he will be away for a while. So before I can go out of the house, I have to do a major comb over and sprinkle my head with powder to camouflage the baldness. I will never again be able to style my hair. Then I have to put on the compression sleeve and then I have to put my fake boobs on. And because I've gotten so fat, I have barely anything to wear. So that's my story. Thanks for listening.

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    That's OK Helen, I TOTALLY agree with you about how all that stuff you have to do in order to make yourself feel even barely minimal presentable would be a depressing horrible pain in the butt. I used to hate the wrestling matches with my wig, but up to that almost a year PFC point, well, topless was NOT an option for me! I don't know what I'd DO with a compression sleeve or foobs. I don't know if I mentioned this, but a couple weeks before my BMX, my cancer center's "shared decision making" department had sent me this DVD all about mastectomy and ALL the post-operative options, i.e., very detailed video and explanations of ALL the different kinds of recon plus breast prostheses, pros and cons of all, pictures of all. When I watched the woman in the DVD put her foobs into the mastectomy bra pocket and SHE had to futz a little with it, my heart sank: I KNEW I was going to HAVE TO learn how to deal with flat! I mean I'm sure they didn't use a woman with a partially paralyzed hand to demonstrate how to put on the fake breasts!

    Question if I may, Helen; is wearing a wig a wrestling match for you, or can you just put one on easily on the first try? Or at least, is it easier or harder and more time consuming to put on/adjust a wig than it is to do the comb-overs and powder sprinkling to hide having so little hair? From what you describe, it sounds like a wig might be easier and you'd at least find your appearance tolerable.

    Crying on Wellbutrin and feeling like emotional crap -- you're still taking the Arimidex, aren't you? I cried a lot and felt like nonstop emotional crap while I was taking that, too -- yes, in spite of the Wellbutrin and even when I started to see a counselor. You're not alone. 

    Of all the issues you have, IMO the only one you can really change is the weight. You can't change the fact of the cancer or that the chemo destroyed your hair. You can't change the SEs of AIs, or the lymphedema or the flat chest unless you wear foobs. But the weight, yes you can, believe it or not.  I know I posted this way back when ALL of us were frequently complaining about our weight, but I'll post it again:

    http://www.fourmilab.ch/hackdiet/www/hackdiet.html

    The guy who wrote this was 70 pounds overweight and this was how he ditched his excess poundage. OK, I only had 30 pounds to lose, but I lost them by using this guy's plan, which he calls the Hacker's Diet, as the base upon which I designed my own diet in regards to WHAT I LIKE to eat, how I cook and so on, including not having to spend any more money on food than I would have anyway. Anyway, this works and when you base it on YOUR food and cooking preferences, maintenance is easy -- so you don't have to get trapped in that yo-yo dieter syndrome.

    Went to the store today. Bought more oranges (among other things) -- didn't bring any upstairs though. LOL. Then had lunch with my Pack Rat at the general store in his town, and he said he'd finished painting my new fender and he wanted to compare its color to what's actually on my car, so I followed him back to his nest. Fender looks great and he says he has the headlight assembly in a box, so when he comes back from CT he can finally fix my car and I can do all the NH license, registration and inspection stuff. Yeah he switched up his home vs. office work schedule again. His boss is a medieval warrior and Pennsic is coming up, so he doesn't want to end up in the office while his boss (who shields him from all the political bullshit) is on vacation fighting at Pennsic. So if he goes to the office for this week, he'll be able to work from home the week after, while his boss is on vacation. Oh but I digress...after checking out the new fender, and my telling him from having noticed driving behind him after lunch that if HE expects to pass inspection, he better check ALL his taillights first because from what I saw, at least two (a rear turn signal and the opposite rear brake light) don't work.

    ....and then there was the Picnic Table. Did I ever mention the Picnic Table....? Damn right I took a 2 hour nap as soon as I got home! LOL 

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    I know you are right, Lena. I think I'm being self destructive. I hate wearing a wig. It's uncomfortable and for me would be an indication that I have to give up.......which I will probably have to do at some point but I really don't want to



    When do you expect some dx from docs regarding how you are feeling? I've had rads two different times and I found it to be quite tolerable. Hope all goes well

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    I have no idea when or even if any of the docs will find out what's wrong with me, but now we can add "projectile vomiting" to my symptoms list. :-P

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Oh Lena. That sounds awful. Is it possible you have picked up some sort of " bug" that is affecting your digestive system? I wish there was something we could do to make you feel better

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Yeah it was pretty gross. Ewwwww. And I was still nauseous this morning, including during the drive in the downpour to go get my rads. BUUUUT...when I came home from rads, even though I immediately passed out on the couch for 2 hours, when I got up I actually felt like eating a bunch of fresh cherries. And I'm not nauseous anymore, AND I had the first actually NORMAL BMs since this all started. Dare I think maybe you're right, it's a bug (but then again I don't know of any STOMACH "bugs" that last for more than 48 hours and I've had this for just over 2 weeks I think), and it's on its way out? Yeah sure. OK, I'm getting better. But as someone who sees the glass as on the floor broken in bitty shards, I'll have to figure it going like this:

    I'll get better and be OK till the weekend or maybe even into early next week -- and THEN I'll get hit with rads SEs. One down, 32 more to go. Yes I slathered on the Jeans cream, but I think that only works for the SKIN, not the FATIGUE.

    Ah well. Hey Judy, if you're out there: I'll trade you a stomach bug for your moving chaos! I'll take your place with the work of unpacking and cooking dinners for you and your family, and all you need to do is lie in bed or on the couch having bad gas pains (you can use my percocet), constipation, diarrhea and a little projectile vomit.....OK? Whaddaya say? Whaddaya mean NO? I thought it was an offer you couldn't refuse!  :-O LOLOLOLOLOL

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Lena, it's good to know that for a little while you were feeling better. Walking is always good Ginger can help with nausea. Hopefully the rads won't make you more tired

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    LOL Helen, thanks but I don't know which of those I think is worse, nausea or ginger! OK, I do like ginger ale sometimes, but I don't think that's a strong enough concentration to be helpful, if it really is helpful (I've heard a lot of folks say it is, not just you this time). Once I drank a cup of strong ginger tea a friend made for me when I was sick to my stomach. I had to drink it very slowly, it was awful...and I threw up anyway; and I do know that time it was some kind of bug, it was a few years before I got the cancer. Think I'll stick with the walking in this case, as long as I have the energy at least.

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  • inthemoment
    inthemoment Member Posts: 538
    edited July 2011

    Lena - hope you continue to feel better, and as Helen says, we all hope it is a bug, and that you tolerate rads ok.

    Helen - sorry that you are having all the self-image problems.  With two saline implants that do the job as far as clothing, but which I absolutely hate looking at and avoid at all costs, I have a small understanding of how you feel.  I'm still struggling with an extra 15 lbs, but not able to keep myself away from comfort foods (bad name, since after you eat them, you do not get long lasting comfort - only long lasting pounds). I don't have the hair problems, which I know from the two plus years we have all been on here, have been the most difficult for you.  Wish there was something that could help with that.

    Judy, Judy, Judy - where are you?  Been too long and we all miss you!

    Everyone else - hope it's a bit quiet because you're all busy with good things.  I'm leaving for the Jersey shore tomorrow for three days, and looking forward to a little R&R.

    Geri

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    And...it's back. Of course. I wanna go home, take a pain pill and go to bed but I'm stuck here for a 2 PM appointment with my counselor. I like her and feel she's helping me, it's just that NOW, TODAY, I WANNA GO HOME, TAKE A PILL AND JUST CRASH! (yeah, I'm at the medical center and knowing it would be a long day, brought my iBook).

    Onc's gonna look into the Mystery Ailment (I saw her this morning after the vampire but before rads). In order, and depending on if/what is discovered:

    1. CT scan, only this one WITH contrast (the one I got in the ER was no contrast).

    2. Colonoscopy.

    3. Laparoscopic exploration of my peritoneum.

    Obviously I hope she finds something in the CT scan with contrast so we don't need to progress to the other stuff.

    Be careful in the Garbage State, Geri.

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Hi Lena. I hope you get to go home soon and get some rest. Those full days at the hospital are exhausting not to mention the stress of worrying. I know your PR is great but do you have any family or other friends who can help you when you don't feel well?

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Greetings from the local hospital's ER; I'm waiting for them to cart me up to Dartmouth now. My blood tests from this morning freaked out my oncologist so I'm here on her orders; if the tests they did when I got here had NOT been the same as this morning's, I could have gone home, but they're worse now sooooooo off i go  Maybe this is the mystery ailment about to be solved. Either that or I get to die of something not BC -- kidney failure instead. LOL 

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    OMG! Lena! What is happening? I'm so worried about you. If you were here in T.O. I would come to the emerg to be with you. Please let us know what's happening or tell your PR to keep us posted. You might have some sort of an infection. I will keep checking for you. If you have a phone and you want me to call you, I will - just send me the number

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited July 2011

    Wow...I leave for a couple of weeks...Amy with cellulitis...Lena with a mystery disease. Hope you both are feeling better when you read this email.

    I'm doing better these days...I'm happy to report. My arm is better. The flesh wound has healed and the swelling is down. I'm back to just wearing my brace during the day, no compression garment. TG

    I sure hope Amy brought a compression sleeve with her on her trip.

     Lena...don't think Judy will take you up on the offer to switch places. I think the p.v. was the determining factor.

    I'm sad but glad you are at the hospital, at least they can monitor you there.{{Hugs}}

    Betsy

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Lena, please let us know what's happening

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    It's not a bug, it's an obstruction of my ureter. They ambulanced me to Dartmouth where they stuck me with needles and needles and needles over and over (I have not one but TWO IVs in my right arm as we speak) and filled me with fluids and plasma. I also had a CT scan and a nephrostomy, then this morning an ultrasound. Next is my 11:45 rads.

     

    ...yeah, as you can tell by me being here -- I brought my iBook with me. Good thing, since they're going to keep me at least through the weekend.  So apparently rumors of my impending death are greatly exaggerated.

     

    My Pack Rat was originally going to make a run to NJ to see his parents before coming back up to NH, but when I talked to him on the phone this morning he said he was coming straight back and he could do the NJ trip another time. So, that's what's happening.

     

    Betsy, LOL yeah, I thought maybe the p.v. might be an issue with Judy, but I only did that once so it's only a little bit. LOL I know I'm weird. But OK no more pain, nausea or vomiting for the time being. Oh yeah and I'm so glad you're healing up and feeling better.

     

    Thank you so much for your concern, Helen.  {{{{Helen}}}} If I "wake up" any maybe I'll send a PM.

     

    Later, all.feel as well as possible.

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited July 2011

    Lena,

    Normally I don't visit this site during my work day but I was worried about you. I'm glad they at least found what was causing all your symptoms. You sound like you are in good spirits considering what your poor body has gone through. Take care and rest, if you can. Even if its drug induced rest.

    later,

    Betsy

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Lena, what a relief to see a message from you. What do they do to unblock the ureter? Sorry to hear you have been poked a lot...ouch!! I'm pleased they will keep an eye on you for a few days. I don't know what the weather is like there but it's a sauna here -- temperature is around 110 - quite unbearable -- and actually with the humidex it's more like 125. So best to stay inside in the air conditioning - it's too hot to try a walk. Nice that your PR will come  to keep you company. I'll keep checking in to see how you are doing --- even during the day like Betsy. Take care

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  • inthemoment
    inthemoment Member Posts: 538
    edited July 2011

    Back from the "Garbage State" to find Lena in the hospital!!  I hope you are feeling better by the time you read this Lena...we're all thinking of you, and the April '09 girls are a powerful force when concentrating on sending good thoughts to one of their own!

     I, too, will be checking in more frequently until we hear that you're better.

    Geri

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Lena, no message from you today. Hope you are improving.

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Glad you survived the Garbage State, Geri.

    No,  no messages from me yet, Helen, because there's nothing new to report. Back to sleep now..... 

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    A little message is still good. Get lots of rest and feel better soon

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Ummm, OK so I've gone from having the Mystery Ailment to the Mystery Kidney Blockages from Hell? Is that really the kind of news that's going to make you feel better? Or that I had to have a second nephrostomy? Well that's the only medical news up to now. Oh, except that I've still been having my radiation treatments on schedule. Had 1-5 last week, coming back to #6 today.

    Pack Rat will be here soon though. That's a surprise, sort of.  He was here awhile yesterday evening. I thought our plans were for him to be coming today, yes, but not till around the time of today's rads so he could be here in case I had more kidney procedures. But I got up this mornng and saw he sent an email at 7:30 saying he's on his way. Which would get him here at....8:45-9 or so (within another half hour or 45 mins), and rads aren't till 11:45.

    Hmmm. I've had a bowl of cereal and my morning coffee, written this post and I'm already exhausted....well OK then......now you're updated. 

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    (((((Lena))))) so sorry you are going through this. Sending positive wishes your way.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited July 2011

    Back from my trip. It was a bit shaky at the beginning, as I was covered in poison ivy, other undeterminate rashes and then the hives from the allergic reaction to the antibiotic. I was quite a mess. BUT once I stopped the antibiotic, the hives GRADUALLY started to fade. I can't say it was a picnic, as the whole thing was quite a lot to manage, BUT we did have a wonderful time. Montana is beautiful. I had never been to the pacific northwest and can't wait to go back.  We flew in/out of Spokane, which was a lovely city. Everything is SO CLEAN out there. Lena - you would have been very impressed, after your time in NJ.  As an east coaster person, I really notice when there is no litter or graffiti.

    So Lena - what's the deal? Or as the kids would say WTF???  What caused the problem - was it cancer related or something entirely unrelated?  I have to say - going thru this whole thing with the cellulitis (and potentially MRSA), it really made me realize that there ARE other things that can go wrong with us besides BC. I guess I figured that was the only thing I'd ever have to deal with. But I realize that's not the case.  So besides poking you with too many needles, what are they finding out? And how soon do they LET YOU OUT - which I know you must be ready for by now....

    I thought of you on the trip, because there is a lot of mining in MT - gold silver etc. And somewhere we were was where they mined sapphires and it was their claim to fame that the only sapphire from NorthAmerican that was in the crown jewels of England was from there. I thought that was interesting.

    Please update and tell us how you are.

    We got home at 3am last night and i have tons of work to catch up on today. I will write more later and try to link to some photos. It was really beautiful out there.

    Love to everyone - Judy where are you?
    Amy

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    Amy, glad to hear you had a good time despite the shaky beginning. Hope every one doing ok. Has anyone heard from Judy? Lena, hope today is better

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Another vivisection...Lab Rat here almost bit the mad scientists. GRRRRRR!!!!!! >;-P SQUEEEEEEEEEEEEE gonna give them the damn rabies, typhus, plague and tularemia they frickin DESERVE. >:-P GRRRRRRRRRR!!!!!!

    ....so I still have the nephrostomy bag on the right they had PROMISED would be off me today and didn't get the new stents either and why for the very same "reason" they couldn't do it yesterday -- they couldn't give me any more of the (sedating) medicine and it was too painful to do without, well fucking DUHHHHH LIKE I COULD TELL YOU THIS already now just give me the damn medicine already and do it RIGHT instead of telling me to stop screaming too loud because it's disturbing the other patients -- well stop this pain and I'LL STOP SCREAMING YOU FUCKING MORONS! Sorry if my compassion is limited when I'm in excruciating pain but that's how it is and if it happens again I'll have to say would you do this or let this happen to a friend or family member of your own?

    My onc stopped in a half hour ago...after the vivisection (#2!), then rads, as soon as I got back to my room I told them (the nurses) to take my vitals then get out and stay out, and anybody who wasn't one of my regular doctors (onc, PCP, surgeon or counselor) or my boyfriend should not be allowed in. So I had 2-3 hours to sleep some of it off. My onc said she would make sure I got an actual general anesthetic this time (as in another beg removal/stent insertion tomorrow).

    Amy no more questions please. I'm sick and tired of them. Glad you got the wonder of such a "clean" experience out west -- and sooo glad you were able to enjoy your vacation and begin feeling better, too.

    It's still my guess that Judy is up to her ears in moving chaos and we won't be hearing from her for at least a couple more weeks. 

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited July 2011

    Oh Lena - feel better soon. Sending love & care across the miles to you.

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