I am terrified of chemotherapy

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010
    calamytkel...How did your first chemo go? Waiting to hear from you.  Bon
  • calamtykel
    calamtykel Member Posts: 1,187
    edited August 2010

    Hey Bon! Sorry - I posted over on the August Chemo board and never checked back here.

    I had my first chemo  Monday.  It was uneventful until I got home and suddenly around 7 at night started throwing up like crazy.  They had sent me home with compazine (sp?) but they just said "as needed". I didn't KNOW I needed it until it was too late.  Then I threw it up after I took it.  And kept throwing up.  I was terrified of dehydrating with all that junk in my system!   I immediately called my onc who prescribed a suppository form of it in a higher dose.  Around 1:00 am I started feeling better.   I stayed up the rest of the night drinking tea and pediaylte!

    Yesterday was a good day.  Today not so good.  Haven't puked anymore but the nauseous feeling is still there almost all the time when I'm up and about.  So I've been in bed most of the day which SUCKS.  I went out and took a long walk, did some aerobic stretching - got my heart rate up, etc.  But as soon as I came back in I was sacked out again.  My legs ache from the Neuslasta shot but not nearly as bad as I thought they might.  I took a little tylenol for them but I think I could have pretty easily gone without.

    So  I'm just sort of praying I turn a corner tomorrow.  I only go two Emend and took the second one today.  I hope the nausea is gone tomorrow.  The compazine makes me really sleepy too, so that doesn't help.

    Next time I know - take that medicine as soon as possible and don't want 'til it hits!  I think I'm going to ask for something stronger next time.

  • gingersfavorite1
    gingersfavorite1 Member Posts: 273
    edited August 2010
    calamtykel,  sorry for the rough time you've had!    The onc may adjust your dose next time  (?)   I think mine said he would,  if I'd have had difficulties with it.     I know some of the anti-nausea meds give headaches  (which I suffered from the first time)   so it's a guessing game of which to take and how much . . . . on order to find the right balance.   Here's hoping for a better tomorrow for you!
  • calamtykel
    calamtykel Member Posts: 1,187
    edited August 2010

    Thanks!  I'm doing better today.  I marathon slept last night - I don't think I've ever in my life slept so much in a 24 hour period!  But I'm doing well - no nausea this morning (haven't weaned myself off the comp yet) and actually was able to get some breakfast and have some coffee.  Drinking my blueberry shake now.  :0) 

    I'm still tired, but it was a great night's sleep.  Hoping I've turned the "three day corner"!

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    Just an FYI for others who may face this indigestion/GERD SE of chemo which has been debilitating and taken me out of commission for over two weeks now: I stopped taking Protonix and switched to Prilosec. After 4 days it seems to be having some effect. My new regimen is 20 mg Prilosec in the morning, 4 Gas-EX fast dissolving strips after lunch, a Pepcid-AC before dinner and another 20 mg Prilosec at midnight. This is the only way I can keep the pain and discomfort at bay.

    My last chemo tx is scheduled for three days away. After that I'll have my usual 10 days of feeling like I was hit by a bus and then I need to have my stomach issues resolved. So if I can get an appointment, I'll go for a GI consult in a couple of weeks and start radiation after that. Just what I want...other doctor to deal with!

    Yes, I've discovered that chemotherapy is doable, but at what price? I may be cancer free after this or may not. But it's completely wrecked my gut and who knows what else? Like I've said before, chemotherapy isn't for sissies and I'm still terrified. You have to give the devil it's due. While I try to look at chemo as my friend, it's a friend I would rather never have known.

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    My soon to be 89 year old Mom was diagnosed yesterday with Salmonella after nearly 3 weeks of uncontrollable diarrhea.  It was most probably sunny-side-up eggs she ate at a local restaurant.

    I have an app on my iPhone from the FDA regarding recalls. Not only have they recalled eggs in the past couple of weeks for Salmonella contamination but also some pistachios, alfalfa sprouts, and frozen mamey pulp (a tropical fruit often added to smoothies and other things).  All for Salmonella.  It's getting scarier by the minute.

  • theresap60
    theresap60 Member Posts: 947
    edited August 2010

    Bon, you said "Yes, I've discovered that chemotherapy is doable, but at what price?"  I had many, many of the same feelings you've shared.  I was stage 1, no lymph nodes, all good reports.  I didn't want chemo, but the doctors and my family convinced me it was for the best.  While I was having one of my treatments, an elderly gent came in to get his treatment and asked me what I was in for.  I said breast cancer, early stage 1.  He told me a story about his wife.  She had early stage breast cancer also and just had radiation, no chemotherapy.  A few years later, the cancer came back and was more aggressive and killed her.  He said he was furious that the doctors didn't recommend chemotherapy for her (different oncologist).  I'll never forget that man and his story.  It's exactly what I needed to hear.  Sure, there's no guarantee that the cancer won't come back, but our fighting chances are much higher now for long-term remission or cure.

     As for nausea - they told me to take the nausea pills before, during and after chemo (I think it was compazine) - not to wait for the nausea to set it, b/c then it would be too late.  I had problems with diahhrea where Imodium did not help.  They gave me donnatal and it stopped it.

    I was able to handle the chemo much better than I handled the Neulasta shot.  THAT was awful!

    Hang in there!!

  • Eileen101
    Eileen101 Member Posts: 93
    edited August 2010

    Therasap60: Thank you! for your post. I also needed to be reminded that the chemo is probably saving my life. I'm so sick of the struggle. I do think chemo is nothing less than barbaric. I hear people say again and again: Chemo has come such a long way since so-and-so went through it. Medicine has advanced so much. They can now target specific areas without killing the good cells. blah blah blah. Yeah, I'd heard that too, but now that I'm there, I know it's not true. Yes, it may be saving our lives, but it hasn't advanced at all as far as I can tell. My father was on chemo 20 yrs ago for lymphoma and I truthfully don't see anything different, except perhaps the shots, in my case Neupogen, to elevate the white blood cells. That truly is progress, but the chemo? Forget it. It is what it's always been. Sorry so long. I meant to just be grateful... I am grateful for each one of you who've made this journey a little easier just knowing I'm not alone. xoxo

  • theresap60
    theresap60 Member Posts: 947
    edited August 2010

    Eileen, I know how you feel.  Barbaric - yep, I had the same thoughts!  I felt like saying "bring out the leeches!"  Maybe you need to be a medical professional to really appreciate how far they've come ... and maybe they're talking about the meds used to treat the sickness associated with chemo.  "Back in the day", I was told, they had to hospitalize folks b/c they'd be sick as dogs.  I kept working, except for the two days following my Neulasta shot.  The bone pain from that crippled me!  I'm sorry about your Dad.  My family is full of cancer - my Mom, my father, my brother, my aunts, my cousins, yet when they did the BRCA gene test on me and my sister, we were negative!  Go figure!  The doctors say it must be some mutant gene that they don't test.  Grateful!  Yes!  I've seen too many of my loved ones pass away from this horrible disease.

  • Eileen101
    Eileen101 Member Posts: 93
    edited August 2010

    Theresa, you're absolutely right. And the elderly man's story about his wife was not only a gift to you, but to all of us. I especially shouldn't need such reminders. I'm Stage 2 with a Bloom-Richardson score of 9! btw: my Chemo Angel (see chemoangels.com) is a 12-yr survivor. Her sister, niece, and 2 other women in her family are b.c. survivors; yet, the 2 who were tested for the BRCA gene were negative! And I tested positive for BRCA-2. My mother had b.c. at 57, but no other women in the family, so yes, go figure!

    I'm so sorry to hear your family has so much cancer. What a horrible thing so many endure. Next year at this time, this will all be a memory for us as we've gotten on with our lives. Stay strong!

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    My 4th round of Taxotere/Cytoxan/Herceptin is scheduled for 9:15 tomorrow. Am supposed to be done with chemo then. Dread it as much as the first time around back on July 23rd. Chemo doens't get easier to deal with because the SE are so random. I sitll have the GERD from round 3 so hope that my gut holds out long enough to get past the 10 days of the 'poorlies' and get to a GI consult before having to move on to radiation.

    I don't know if the SE of chemo ever leave you. My fear is that some of these SEs will be a forever thing. Better than cancer, sure. But certainly not without another set of worries. I have to remember that chemo is my friend but that we are not being cured. Just eradicating this cancer for now and hopefully for the future. No guarantees. But, as the saying goes, nothing ventured, nothing gained. I've gained a lot of weight from the steroids. I don't suppose that's the 'gain' they were referring to now, is it?!  Bon

  • LadyinBama
    LadyinBama Member Posts: 1,132
    edited August 2010

    Hi all, I got my start date today, next Tues., Aug. 31, and it is freaking me out. I am trying to keep a positive attitude about it and remember that chemo is curing us, etc., but my heart races every time I think of it. Oh well, I've got a week to try and chill about it and try to get my head on straight(er) by next week.

  • LadyinBama
    LadyinBama Member Posts: 1,132
    edited August 2010

    PS Eileen: What's the bloom/richardson score? Is that the one that tells us the Grade?

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    LadyinBama...you can do this. I'm just whiny these days because I'm stressed about work and my Mother who is ill. But chemo is doable...just not fun. If you go to page 4 of this board you'll find post I did with some info on tips to get you through. And ladies come here all the time giving great advice and encouragement. Remember...'You don't have to be brave. You just have to show up'. Somehow remembering that does help me.

    Best of luck on the 31st. I'll be thinking of you and keeping my fingers crossed that you spend most of your time in the NO SE Zone.  Bon

  • Eileen101
    Eileen101 Member Posts: 93
    edited August 2010

    LadyinBama: Yes, the Bloom-Richardson is the grade, so a B-R of 7-9 would be considered grade 3, the high score, an aggressive cancer. But that's why we have chemo--to stop those crazed cells in their tracks.

    Bon is right. chemo is doable. Please know that the terror before the first chemo is worst than anything that follows. Seriously. I was a basket case the day before. I called my son from work, crying the whole time, my hands shaking, and he had to put me back together, and good kid that he is, he knew just what to say. But my point being: Whatever I imagined beforehand was far worst than the actual going through it. Not that it's a picnic. Not that it's not difficult, but somehow you find that you can get through it, one day at a time. Also know that no one gets every side effect and that you might not get some of the ones that everyone else suffers from. Also, some treatments give you more SEs than others. You'll only know how your body will respond when you go through it, but be prepared for the worst, i.e., have whatever meds you need ready in the house, but think that you'll do well and not suffer the worst.  Hugs, eileen

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited August 2010

    I am assuming I am cured until proved otherwise.  And I am living my life that way.

    I still have a few SEs left over from chemo four months later, but really minimal.  Sort of like that scar I have on my left knee from removing some skin while hiking a few years ago.  Come to think of it, my right foot still hurts a bit from that slip too.  I never had it treated, but assume I broke one of the small bones in it.

    I am expecting the SEs to fade away just as the soreness in my right foot/left knee has.  My surgery scars are already fading.

    Everyone thinks my ultra short hair is hot looking.  Good thing, as I think I have a major career opportunity coming up.

    And less than a year later, all my kick-butt energy is back.  Couldn't believe how strong I was when I swam in the Atlantic while visiting NYC last weekend.  Swam for at least 1.5 hours.

    As for meds....just anastrazole and vitamins/supplements.  Plus aspirin as associated with a lower risk of recurrance.  That's it.

    So nice to be there. - Claire

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Just checking in - All going well post last chemo by 22 weeks.  Amazing how your energy builds back up again.  I am back in the gardens working (no small chore - lots of very hard strenuous work), have started up my strength workouts as well as power walking (hope to start biking as soon as the temps get back down from the 90's), and have even started painting the outside of my house with my husband, my taste has returned, my hair is coming back (although stark white and a riot of curls), my brows & lashes have gone, come back, gone again, and now coming back again, my nails are still somewhat crumbly but have no doubt they will start recovering soon, etc etc.  Point is, it all comes back - the chemo doesn't rob us for long and hopefully we have conquered the cancer for good.  I go tomorrow for my 11th Herceptin and only SE from that for me is slow growth on hair that is returning and very sleepy afterward which is from the Benadryl that is given along with the Herceptin.  

    Everyone hang in there - life will become brighter more quickly than you think. 

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    LadyinBama...if you haven't already joined a group going through chemo at the same time as you are, I'd suggest you sign on with one and share the experience and knowledge with others at the same starting point, too. There is one called  September 2010- Anyone starting Chemo and it was started by scrabblelady. Since you are starting on the 31st of August that seems like it's plenty close enough. There are a number of people signed on to that board already and I really think it might be helpful. I can't tell you how bonded I am with the women who started chemo in July when I started. That's the group I follow along with most closely and it's been a terrific source of encouragement, knowledge and compassion. We aren't all on the same drugs nor have we all had the same surgery, nor the same tumor type. But we are all there for each other, listening to the daily things that arise after each treatment or each side effect. Or just life stuff, work issues, partner issues, family stuff. It's a very open and honest exchange and I'm particularly grateful that I joined it.

    This cancer diagnosis starts the world spinning in a new direction and there are so many 'phases' of the treatment to deal with. I usually assign theme songs to events and situations...sort of like adding background music you hear in movies. One my recurrent songs for chemotherapy has been "Minute by Minute"...I hear Michael McDonald singing that everyday. "Minute by minute, I'll be holding on. Minute by minute, I keep holding on."  Pretty soon I'll have to come up with a song for when I start radiation! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    I didn't have a song - I had a line from the movie "The Bucket List"... 'Somewhere, some lucky SOB is having a heart attack.'  Seemed to fit perfectly :-)))

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    Yesterday was bittersweet. I finished my TC tx and should be elated. But in the middle of the night they admitted my Mom to the hospital because she is not resounding to the meds for Salmonella and has gotten much worse. Now I'm terrified for her, not for me. Please pray for her.  Thank you.  Bon

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited August 2010

    Will pray for your mother Bon.  I am so sorry.

    Yes, there are some things that put chemo in perspective.....not fun, but not the end of the world either.  Reminder to you that it will take about one month to go through the entire cycle.  So once your mother is well again, you will most likely still be going through some symptoms.  I was sooooo over it by then, and my mind was done, done, done but my body said otherwise.

    You are right.  Now the focus needs to be on getting your mother well and strong again.  My prayers are for her recovery and for strength for you.

  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited August 2010

    First of all, my best for your mom.  Tough to have to be a caregiver at this time and to see someone you love hurting and ill.

    I haven't read the whole thread but I'm going to say this:

    Saying you feel bad because you expected to is (IMO) equivilant to telling a woman with BC she caused her own BC and could have prevented it if she'd done things "right."

    Hooey on both.

    You have cancer.  You're going through treatment.  You're not supposed to feel great!  Even if you had no physical SE's, the emotional wear and tear are enough to stop anyone short.

    I think there's a huge myth about the BC SuperWoman.  Yes, we are strong, we are tough, we get through it.  BUT... we cry, we hurt, we're scared, we feel like crap.  I remember talking to my therapist last year and telling her I wanted to be one of those women who laughed cancer in the face!  Had a great attitude all the time!  Never let it get me down!  Lept tall buildings with a single bound!

    She told me those women only exist on the surface.   Inside, they go through everything I was going through.  Considering she worked with 100's of cancer patients, I believed her.

    I also want to add (and will get blasted by some, I'm sure) that the idea that women with a "better attitude" get through cancer better is another myth, especially given how some women define that attitude. Being upbeat all the time won't get you through cancer better.  Hiding things won't get you through cancer better.  Stuffing your fear and pain down deep won't get you through cancer better.

    Women who share what they're going through (as you have) get through cancer better; women who take control of what they can (as you have) get through it better.  But we all hurt at some time or another, and putting on a brave face and pretending is not good for anyone. 

    Rant over with :)

    6 months out from treatment, I feel massively better!  Most of my SE's are gone although I still have some residual neuropathy and I'm still working to get my physical strength back, and my energy isn't 100%.  But I'm getting better week by week.  My nails are the strongest they've been in my entire life -- 4 months ago they were cracking and splitting; now I can barely keep up with filing them, and they don't chip or break like they did pre-cancer.  I attribute this to the biotin I'm taking but I don't know for sure.  I laugh again (for weeks I thought I might never feel good enough to laugh again); I get through days without 4-hour naps.  Point is -- SE's fade. The fatigue and heartbreak of dx and treatment fade.  Will cancer always be hanging over me? To some degree, but I refuse to let it take over my days.  Like Claire, I'm assuming I'm good to go until someone tells me otherwise.  Last year was horrible and I thought I'd never feel better, but I do. In the overall scheme of things, as hard as last year was (and it sucked me down to the bottom of the trenches), it was only a blip on my radar screen.  I know some women say they don't feel "normal" ever again; it varies for each person, but I would say, at this point, on most levels, I feel better than normal.   I can't go back to where I was but I can go forward and continue to be the best I can be and make the most of my time.  I feel like a lion some days!  I just want to dance on the rooftops!

    As I glanced through your posts I saw your strength emerging as you got farther into treatment.  You may not feel it all the time but I, for one, can see it.  You're getting through this and will get through it.  Thoughts and prayers for your mom, and my very best to you.

  • lilacplane68
    lilacplane68 Member Posts: 25
    edited August 2010

    I just want to say that when I was going thru chemo, the chemo "killed" off all the other niggling little things wrong with me, besides the cancer. Nails got stronger, skin like a new baby, some aches and pains I had before just disappeared. Of course it didn't last. hair grew back, old aches returned, but, I got thru it with a minimum of discomfort and am so grateful to be alive, it's just a faded memory now (2006).  In Dec. 2009 I went back for a double mastectomy (just cysts this time, not cancer) as  a preventive measure.  Don't miss my "girls" a bit. word of warning, tho. If you plan on having reconstruction do NOT have radiation.  It compromises the tissues so they don't "stretch" enough for the expanders. Best to all of you and get well. This is only one small passage thru our lives. sincerely, Margaret

  • Eileen101
    Eileen101 Member Posts: 93
    edited August 2010

    Bon, I'm so sorry about your mom. I sent up a prayer and good wishes for your mom and for you. So glad you're done with chemo and hoping both you and your mom can do nothing more than recuperate and be well.xo

  • soulswithin
    soulswithin Member Posts: 154
    edited August 2010

    Bon, I hope your Mom is doing better by now. Tough for you I bet. This world is tough enough already!

    I read your whole post today. Thanks so much for all the information and for the new knowledge that 'I am not alone'. I'm scheduled to start chemo in 2 weeks, almost the exact diagnosis of yours. You made me realize I may be ok getting thru it. And I am a reality nut, who wants non-sugar coated answers, so appreciative of reading real accounts of that 'dang poison. Best of luck and pulling for you and your mom!

    Thnx everyone for your input also.

    I am also terrified of Chemo. Much more so than the cancer, which I had managed to avoid chemo, until this week with some new test results, changing a few numbers to my final evaluation, after 6 months of 6 biopsies and 3 lumpectomies. One disappontment after another.

    Best wishes.

    Linda

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    Thank you to all who understand how desperately upset I am about my Mom's condition. Today they are finally giving her a transfusion, continuing on meds to lower her potassium and trying to address the diarrhea from the Salmonella. She is really very weak and verbalizing that she is afraid she will not come through this.

    Today is day 2 after chemo and day 1 after Neulasta for me, so I feel wobbly and shaking inside. Not a day when I can do much good for anyone, not even for myself. I will be on the sofa most of the day, phone in hand, talking to Mom when she is feeling well enough and trying to keep hydrated to get this poison out of my system.

    Yet another reason to hate cancer more than before...it's keeping me from being there for my Mom when she needs me... or better yet, when I need to be with her. I hate cancer, I hate cancer, I hate cancer. And it doesn't deserve a capital "c" in my book. It's lowly and sneaky and nasty. No "big" c for it. It should have it's own even smaller sub-case. It's just despicable.

    Please keep my Mom in your prayers. Thank you.

  • gingersfavorite1
    gingersfavorite1 Member Posts: 273
    edited August 2010

    I agree Bon  (and bless you & your mom during this difficult time)   My siggy on another message board is Big C = Christ, little c = cancer!

  • Elayne
    Elayne Member Posts: 5
    edited September 2010

    Hi Bon of Vero Beach Florida!  I am Elayne your neighbor of Port St, Lucie Florida!!!   I am here to tell you I definetly feel for what you are going through!  I have been diagnosed ER+ PR+ and HER-I was diagnosed with breast cancer like you in April this year.  Had 4 cycles of Adriamycin and Cytoxin to shrink a 2cm tumor and 6 chunky sized lymph nodes.  The shrinking was pretty sucessful.  July 22 I had a lumpectomy and removal of all my lymph nodes (!7 of them) in my left axilla area.   I was so fortunate to have a wonderful surgeon.  Dr. Sanderson of Stuart.  She was a maestro!  She only does breast surgery, and you would never even know I had surgery!  The lumpectomy did not change my breast appearance at all!  The only scar I got was a 2 and half inch slit under my arm where she removed nodes and tumor from that one area.  My margins in the breast were clear.  But the lymph nodes still had some live cancer concerns.  I began Taxol treatment 2 wks ago and will continue in a lower dense but more frequent infusion 1 time weekly for a total of 12 wks.  My end date is November 9th!!!  Ah, and then radiation time!!  I don't think I want to do the full months worth!  Anyhow I have my kinda good days ,cryiing jagg days, optimistic days, pessimistic days, GI Jane Kick Ass Days,  Concentration Camp victim days!  Days of craze! Days of Haze!  Just wanna be the ole' me Days!  The How did I get here Damn it Days! the You just don't understand Me Days!  The I'm Sorry I'm Flippin Out Days! And the Always Prayer Days, Thank You Lord Every Day Days,  I'll Make a Change Better Me Days!  You know the list Bon!  I could name a million more feelings of this emotional whipping rollar coaster ride.  I sometimes feel like I am living a bad c class movie, and I am the starring role!  I don't like this movie any more and I want out!  Yes this is a learning experience.  Yes this is quite the humbiling experience too.  I am humble, I just don't want to crumble.  But I will get there, if I have to scratch and crawl all the way.  This is War!   So Bon, maybe since we are basically one town away!  We can get together and have a CELEBRATE REBIRTH DAY in November!  When you are finished and I am too.  Time to get off this coaster, and kick are heels up!  Here's to us!  And here's to every other person on this site battleing away.  I love you all!  You are all an inspiration and my heros!!

  • PearlGirl
    PearlGirl Member Posts: 549
    edited September 2010

    Elayne...I, too, went to Stuart for my surgery and see Dr. Vopal, who is in partnership with Dr, Sanderson. I love that man! His skills are unquestionably A-one and his bedside manner and level of involvement with his patients is just unbelievable.  If I hadn't found him, I don't know if I would have done anything about my dx, that's how ambivalent I was. There are no docs in my county who specialize in breast cancer so I feel blessed to have found him because I wasn't going to let any general surgeon touch me. Nor a plastics guy who hasn't the real knowledge about cancer. That office, Vopal and Sanderson, is the real deal.

    I have been getting chemo from Dr. Iannotti in his Fort Pierce office since it's much closer for me to get to from Vero. And I'll be doing my radiation with Dr. Griffis either in Stuart or SLW. Both are a long drive when you are doing it 5 days a week for 5 weeks, but I know people who commute for work to both those places so if they can do it, I can too.

    I totally understand your mood changes and have had each one of those myself. Now I'm just sick of this whole thing and want my life back. I just hate what cancer has done to me physically, emotionally, spiritually and financially. Did I mention that my insurance doesn't cover Dr. Vopal? I chose him anyway but it's not been easy covering the fees since I'm self employed and am having difficulty working full-time during the chemo. Radiation will be another challenge to my work schedule.

    I'd love to celebrate every milestone with you.  If November is the end of your chemo, for sure we'll meet up then and toast to your Rebirth, as you call it. Heck, it's pretty accurate. The chemo is killing off all the cancer cells and the other new cells, too. So after it's out of your system, the new cells will finally get a chance to stick around...a rebirth of sorts.

    And by November I hope to be done with radiation. Still will get Herceptin IV every three wieeks until the end of June 2011. I'm wearing out the tires going back and forth to St. Lucie and Martin Counties! There is so much more for breast cancer patients down there. It's tough to accept that Indian River County has no decent services for that. Heck, the American Cancer Society here hasn't ever contacted me even though I signed up with them twice and went to a lecture they did and gave my name and phone number on the sign-in sheet. No, this county spent zillions on an open heart center that has the hospital nearly bankrupt and the well qualified docs they brought in are doing throw away surgeries to keep busy. There was no call for such an elaborate facility but lots of money from rich old codgers on the barrier island who supported it, fearing they would have a heart attack and need treatment fast. As the saying goes, money talks, and those old dudes with the big bucks don't have boobs. If they did, you can bet we'd have a world class center here.If they had taken even 25% of that money they spent on the heart center and built or organized a breast cancer specialty center, it would be full all the time. Honestly, when I was diagnosed and was looking for a surgeon, I'd ask people who I should call...and the best answer I got was "call Delta and get out of here". Sad...but turned out to be true.

    Probably should have put some of this in a PM to you instead of on this board, but heck, it's all true. Maybe that's another lesson for the newly diagnosed...it's worth making the drive to save your life and to keep from being butchered or from being treated by substandard docs and/or facilities. It doesn't have to be a big medical center to be good, but it should be a true specialist, not a generalist. Breast cancer and all that goes with it is too complicated to leave it's tx to someone who only deals with it part-time.

    Elayne...let's party in November.  Good luck with the rest of your tx.  Bon

  • PearlGirl
    PearlGirl Member Posts: 549
    edited September 2010

    Today is the 3rd anniversary of the death of my dear friend, Bette. She died due to spongiform encephalopathy, a disorder of the protons that go wild and eat up the brain matter, leaving it looking like a sponge. It's animal version is Mad Cow Disease. It is 100% fatal, with no cure and no known treatment. The course of the disease is miserable and the only hope is that perhaps the patient looses cognition soon enough so as not to be aware of what is really happening. Bette died within 4 four months of the start of discernible symptoms and went from a fun, witty, no nonsense, independent, entrepreneur to a non-verbal, bedridden, completely dependent patient with a vacuous stare. I  have never been so schizophrenic as when my elation over getting her to swallow something smooth and creamy turned to sobs of recognition that she was never going to get better.  It was the worst thing I've ever witnessed. I stilI miss her every day. Bette was supposed to have been married in September 2007 to an old flame who took great care of her in the darkest of days. His loss is immeasurable.  I was supposed to perform the wedding ceremony since in Florida a Notary Public is able to officiate at weddings. But instead of attending a wedding, we all gathered for a memorial service and then her family privately scattered her ashes. I'm writing about Bette here because she was a big part of my decision to go forward with chemotherapy.  Bette would have done just about anything to have a chance to live.  She would have tried chemo or anything else if it had been available, offered and had a chance of curing her or sending her disease into remission. Sadly, there was nothing.  So in large part because of Bette,  I felt as though I needed to do chemotherapy...to honor her, to fight for my life since she could not fight for hers, to glory in her spunky nature and upbeat attitude and to celebrate her zest for life. If you are so inclined today or tomorrow, or really anytime at all, please look skyward, raise your glass and give Bette a smile! I promise she will be smiling back with her big toothy grin,  glass of Merlot in hand, toasting our collective healthy future.

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