January 2012 chemo
Comments
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Janetanned: I too feel as if I am taking two steps to recovery and then one day I'm struggling again. I am in the pool exercising as often as I can because if I get on a treadmill ... I will fall on my face! But the focus on exercise for the first time in a few months makes me stiff in the morning. I know some brave ladies here participated in yoga during their chemo...I just couldn't do anything but hold on and survive...so I am building muscle for the first time in months and it hurts.
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NancyHB - I'm such a baby, there's no way I could get "real" tattoos.
I noticed the slightest bit of white peach fuzz in the mirror this morning -- maybe this Nioxin is working. I'm 2 weeks from my last tx.
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Just reporting in that my nightmare did not come true. 7th TX/Her infusion went very well. I even had the strength to go out for an early pre birthday (tomorrow) dinner on the way home.
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Peggy: YEA!! I'm so glad your treatment went well, and was nightmare-free. Was thinking about you today and sending lots of positive energy and good thoughts your way.
Nine of 10 went great today - slept throughout the entire thing, no reactions, smooth as could be. I woke up at one point and realized my husband was gone; figured he went to take a phone call, so I went back to sleep. Turns out he was over in the ER; my 26-y-o son had texted him because he developed a severe nose bleed overnight and could not get it to stop. He went to the ER and his BP was almost 200 / 140; bloodwork shows his kidneys are failing (he has a chronic kidney disease that, without insurance, he cannot afford to treat) and because he had lost so much blood he needed a transfusion, so they admitted him. I went over to see him when I was done and started to lecture him yet again about his health, but I just stopped. I can't do this for him; he has to figure out a reason to live and take care of his own health. He reminds me of my diabetic mother who takes her insulin and tests her blood every day, then eats handfuls of candy or cookies, and then complains because she can't seem to get her blood sugar under 200.
I am *trying* to save my life here, and yet others around me just don't seem to care about themselves enough to do what they need to do. It baffles me - and yes, angers me. I own that anger, and I won't let it consume me. But it's frustrating nonetheless.
Edited to add: He has no health insurance, but could easily control his disease with BP and other medications, and with moderate exercise and diet changes like no more chips or salted fries. But he actively chooses not to eat appropriately, and that has always been his biggest downfall. I'm sorry - I didn't want to make it sound like I was lecturing him and he had no options or choices in this situation.
So - one more to go, then I'm off for rads. Will be so glad to get this poison out of my body!
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NancyHB - My tumor is about in the same place as you describe - 11 o'clock on my left breast. I was really surprised that the tumor was BC because it didn't seem to be in my breast. They couldn't get it all in the mammogram either no matter how much they squished my little breast to the point of pain. That is why I also am so concerned about rads. I met my RO for the first time Monday and he assured me that they have new technology that hits it more from the side - skimming across the chest wall and not hitting it straight down at the tumor site, therefore, missing the heart and lungs. I hope he is right. I feel I have to do the rads because of the TN has no other options. I start 33-34 rads next Monday, only 2 weeks after my last taxol. I am still reeling from taxol SE's. Like some of you, my fingers and feet are numb and tingling. It seemed to be getting better, then boom, today it seems worse and can't feel my fingers or feet. I have no hair growing back. I got some sparse stubble that showed up during taxol but it doesn't seem to be growing.
I'm glad that you are focusing on yourself now and know that you cannot MAKE your son or mother take care of themselves. They have to want to do it themselves.
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Nancy I know it is hard to take but we can't live other peoples lives as much as we wish. Focus on yourself. No one will call you selfish.
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Tina and Peggy: Thank you for your kind - and true - words. I love my son, but I can't stress over the choices he is making right now. When I was first diagnosed last year one of the first questions my MO asked me is if I had had signifcant stressors within the previous six months, and I had had a boat-load - both parents having major surgery (spinal, carotoid and open heart), finishing my thesis and trying to graduate, and another health crisis for my son. Then *wham* this happened. I am working hard to keep my stress levels down - not just physically but emotionally and spiritually too. So I have sent love and light to my son; he knows I am here to support him but will no longer lecture nor chide him for the choices he makes. I have to let it go to live.
And Tina, thank you to for the info about your tumor site and rads. I know I will do them - my fear outweighs the potential SEs. And I think my RO may have described something similar to what you have described, but I met with her almost five months ago now and have forgotten some of what she's said. My simulation is scheduled for 5 days after my last chemo so I'm hoping this means they'll get me started earlier. No need to wait - I wanna get this over with! :-) Thanks again.
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Thank you Denise and Nancy for your responses. Onc nurse said the red wasn't from the Adriamycin, but it only happened that once, so... And yes, I'm backward from what most people get with having the AC last. This last round has really knocked me down, been in bed since Tuesday night. Still feeling like hell. Ugh.
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Kristin - sorry to hear that you've been knocked silly by this last treatment... Feel better soon :-)
I've now done 9 of 12 Taxol/Herceptin. 3 weeks to go!
Not sure how I'm going to get through this 3 weeks. I am still trying to work fulltime and struggling now. I go ok (office job, at a desk with frequent trips to the print room down the hall) for a couple of hours and this wave of physical tiredness washes in - it's a feeling of total muscle fatigue, mild nausea, lack of oxygen, and "dropsy". It is so bad I feel sort of like I could just sink into a big puddle off my chair and onto the floor.
I'm also now so slowed down in my walking. I just can't get my muscles to move me any faster! I was the fastest walker in our family with everyone telling me to slow down mum.
I'm only just (2 weeks ago) 47yrs young for goodness sake - and now so pathetically weak. If rads make me even more fatigued I think I'm in trouble for even getting out of bed each day?
On this group I guess most of us have been doing the cancer thing for at least 5 months now. A GIANT SQIUSHY (but gentle) HUG TO ALL OF US!
Jenn -
Jenn, I really empathize about the lack of oxygen. This just seemed to hit me more during
the last couple of weeks, and this week is the worst. A little better today. I am ready for #12 of
12 Taxol on Tuesday - yippee. But I can barely walk too. I feel like a turtle! I got that way on
A/C but had been better. These last couple weeks of Taxol - rough in that department!
Our red blood cells must be low. Yes, can you believe we have made it through this chemo deal FIVE MONTHS!? Crazy stuff.
I never thought I would make it a month.
Kristin - just thinking about A/C makes me want to cry for you!
Kitchenella - so glad things went well today!!
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So many of us are in a transition period, either having just finished chemo or coming up on the last treatment. I finished mine last Wednesday, which has thrown me into the pre-surgery phase of this Cancer Year. I went to the hospital today for my post-chemo ultrasound and consult with the breast surgeron. What I'm left with is a decision, solely in my hands, between lumpectomy/radiation or masectomy. The BS says (and I have read elsewhere) that they are the same in term of survival rate. Masectomy is slightly better in terms of recurrence rate. I am completely torn about which way to go.
The part of me that wants to do everything I can to prevent having to go through again what we've all been through over the last five months says to have the masectomy. The radiologist I talked to today (female) surprised me by saying that from what she can tell, the women who chose masectomy are "happier," whatever that means. But when I think about losing my left breast, I burst into tears. That makes me lean toward lumpectomy. Ack. I think it really boils down to the phychology of the thing. Will I be more bothered by the loss of a breast or by the extra sliver of doubt that having the lumpectomy leaves me? Frankly, as a triple negative, I am going to have to fight hard not to be worried all the time about recurrence. If I can shave any of that off, it would be a good thing.
Sorry for the long message. If any others would like to share how they grappled with this decision, I'd love to hear it.
Annie
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I had lumpectomy because I was diagnosed in December and was really rushed through everything before everyone went away for summer holidays.
5 months down the line and I have now had a lot more time to research and I am now considering going back and having the BMX and reconstruction. I think I mentioned in an earlier post that the main reason for this is a personal history of multiple chest x-rays in adolescence which I have now discovered set me up for BC and other cancers in the chest area.
So, I understand that for the average woman in my position both options come with the same stats, but my story is slightly different much like someone with the BRCA genes. In your position you need to go with what YOU feel the most comfortable with. Ignore the reconstruction or not options and just decide between lumpectomy and BMX/UMX. Then if you choose the MX worry about the options within that after the initial decision is made.
Jenn -
Annie, once I heard the terrible words "you have breast cancer," I knew I wanted a BMX. I never want to hear those words again -- once is more than enough. I also figured the recovery would be the same. As it turned out, the choice was taken out of my hands when I found out I was BRCA1+. But when the biopsy came back from the "unaffected" breast, it showed pre-cancerous cells -- meaning in a year or so, I would have had breast cancer again. Thank the Lord I had the BMX -- I don't think I could have gone through this entire process of surgery & chemo again, especially so soon. That's my story.
Again, like Jenn said, the decision is solely yours. But take the time and think it through now.
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Thanks, ladies. I feel like I'm actually starting to climb out of the AC hole today. I might even put real clothes on (meaning yoga pants and a t-shirt) after my shower instead of going right back into pjs! I honestly don't know how I'm going to do this 2 more times. The thought of it makes me want to cry. I see my MO on Tuesday, but I know he'll tell me it is what it is. We're combating the nausea the best we can and the fatigue (OMG, the fatigue) is a given. But still... ugh. June 4th is my last AC -- my last chemo. Can't. Come. Soon. Enough.
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KristinFro - oh I just feel for you. When I got to where you were in A/C, I told my MO that I was quitting, I didn't care if I died. He said, "I won't let you." I said I am sick and have no control over my life. He said, "That's because I control your life." And we both laughed.
Then I am going to tell you what he told me - this APPLIES TO YOU!!! "You are very brave, this is hell, you can do it because you are strong and courageous. You are doing an amazing job and better days are ahead!"
YOU CAN DO IT, but it is so hard. We are all cheering you on!!!
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Kristinfro - I know we are all different, but my 2nd AC was my worst. Tx 3 didn't seem as bad and 4 was like 3. So maybe you are dealing with the worst now and the final two will be manageable. I sure hope so. I can tell you that I've almost forgotten how I felt during AC Tx. I remember that it was very unpleasant, but I can't really recall the actual feelings. Its been a little over two months since my last AC Tx and I've been able to put it behind me. You can do it! We are all cheering you on!
Now, if only I could feel my toes! Taxol left me toeless and with a few iffy fingernails. They say it will get better. We will see!
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Mother's Day 2012 - will forever be memorable as the "sucky" one when I was sick, tired, bald and with stuffed up tastebuds...
I know my family are downstairs cooking up a breakfast storm of pancakes and bacon right now. sssshhhh - I will be very enthusiastic and not let them know that everything tastes like cardboard these days ;-)
We can do it women!!!! Hugs to all of you today - mothers or not.
Jenn -
Krisiin-please ask for Ativan if you haven't already. It took me from feeling like crap to feeling up for a walk. Hang in there. It will get better.
Angie -
Annie: Wow, what a decision to be handed. It is not a decision I have been asked to make (or even offered), but like Jennifer it is something I have thought about lately when I realize after all this work I'm still looking at a super-high local recurrence rate, and a high met rate. I don't know yet if having a mastectomy would lower my chance of mets, but if it would I'd certainly consider it.
And yet - even to save my life, it would still be a difficult decision. I have come to think of my breasts as my beloved enemies. I don't *need* them, and I certainly don't want them if they want to kill me. But I love them for so many reasons, and the thought of losing one - or both - makes me cry, too.
I send you love and peace in making this decision, and that whatever you decide it's what's best for you.
*hugs*
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Kristen: I can empathize; AC was so very hard for me and I'm sorry you're having such a difficult time. I was promised a "walk in the park" with Taxol and in general it is easier, but not really. It's still freaking chemo, so I'm working on getting past my anger about how much better I thought it would be after AC. Every morning when I open my eyes (whether or not I am able to get out of bed) I just remind myself, "One more day closer to be done with this sh*t." Five months - five loooong months - I am ready to be done.
Jennifer: I cried so hard tonight - I am so spent. Yes, I really overdid it these last two days after tx, but I thought with steroids I'd be okay. I'm not. I know I will be, but I just can't figure out how to get through some of these days. And everyone keeps commenting on how "good I look" which to me implies they think I feel good so then I have to act like I feel good...and I don't seem to know how to say I'm having a hard time (OMG, I'm walking a 5k next Sunday - I can barely walk today - and I haven't trained at all for this...) You're so close to being done - can you ask for reduced hours for the next few weeks just so you can finish? Even a few hours a week would give you more time to rest and recuperate. I might be getting a double dose but I have two weeks to recover; I can't imagine doing this every week.
Oh, and personally, my "real" clothes usually consist of yoga pants, yoga-like stretch pants, t-shirts, and yoga tank tops. Because I'm such an amazing yogini? Hell no, I hadn't been to yoga in three months, until I finally popped back in last Monday night (and really paid a price for that, but totally worth it). No, it's because my surgeon chose to place my port under my bra strap, and I've basically had to stop wearing bras lately. And because I've gained just enough weight that most of my "real" pants don't fit, and yoga pants are very forgiving. VERY forgiving, thank goodness. Besides, I have cancer - and I want to be comfortable as much as possible.
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Thanks so much for all the encouragement, ladies. Means so much to me. And I feel "better" today. We might even go out for breakfast/brunch -- crazy!
Jenn -- I chuckled when I read your post, not because it's funny in the least, but because I can relate so much. Last year on this date I was watching my oldest graduate from college. I was so proud, so happy. Now I feel like sh*t most days and look like Uncle Fester with a case of leprosy. But yes, you're right. We can do this. Damn it.
Angie -- I've been on Ativan for a while now. I tend to have bouts of anxiety anyway, and this has just quadrupled it. The bonus is, it typically helps with my nausea. Not the AC nausea, I've come to find out. But I still take it every day for the anti-anxiety effects.
Nancy -- I just want to give you a hug. And I'm right there with you -- I live in yoga pants for all the reasons you mentioned. I am surprised that the surgeon didn't mark where where your bra straps hit though. Mine did, so I don't have that problem -- only one out of how many.
Happy Mother's Day. Hugs to all.
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Thanks to everyone for comments on the lumpectomy-radiation/mastectomy conundrum. My understanding is that leaving the breast or removing it doesn't effect chances of mets - only recurrence. And the difference in statistics for the recurrence question is "minimal," thought what's minimal to the medical professional and what's minimal to the person who's undergone chemo is the question. As a triple negative, I've been told and have read that recurrence is most likely to occur outside the breast (how does that even work?). I'm still mulling it over, but today I'm leaning more toward lumpectomy. Tomorrow? Who knows.
Annie
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Happy Mother's Day to all!!!
I started a thread for June, 2012 radiation fyi:
http://community.breastcancer.org/forum/70/topic/787375?page=1#idx_2
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Hey there everyone!!
I hope your all doing well. I have been wither too exhausted to turn the lap top on or my hands hurt so bad I can't even use the remote for the TV, but I have been thinking of you all....I have been trying to come here for a couple of weeks...I finally sat down and made it happen. I work everyday over 9 hours, then eat and go to sleep. I am down to the last Taxol this coming Friday and it can't be soon enough...once a week is really ruff and my weekends are on pain killers hoping I'll recover enough for Monday morning to start the cycle again. Work, Eat, Sleep. I am pretty much useless, all my energy is used at work-family business-and that Machine doesn't run without me being there. sorry I'm whining. I'm just so tired of this....
Additional Testing??? We know that the Chemo is supposed to kill the Cancer cells, but it also kills good cells (or we wouldn't be suffering with some of these lovely side effects)...what tests can be/should be done, to see what damage the Chemo may have done to us. My joints, muscles and tendons have been so swollen, enflamed etc..., I know inflammation is not a thing normally to ignore, which I have now ingnored for 5 months on Chemo. I was just curious if any of you have a list of tests your going to have done after Chemo is OVER??
How are your nails doing?? Mine are some of the worst my Therapist has every seen, I will loose all 10 finger nails. Some are at least 1/2 off now, I have been unable to text for several weeks now...typing is only on pain killers, like now
Did I mention I can not wait till this is done.....hugs to you all, I miss the days I had the energy to be here. Hope you are all well. -
Happy Mother's Day Ladies!! I know it has been a long time since I last posted. Congrats to everyone who has finished chemo. I was very sick for about a month after but now 2 1/2 weeks into radiation, I am feeling great!! I have reflux and some localized tenderness and pain but overall I feel like a truck has been lifted from my body!!!
I hope that those of you having a difficult time start to feel better soon! Hugs to you all!!
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PCBarbie - hugs to you (being gentle not to knock the nails).
Diane - glad to hear you are feeling better. I am so looking forward to that in just over 3 weeks.
I spent all of Mother's Day in bed. I truly felt like the chemo was killing me. Feel much better today but so scared that the next 3 weeks will feel worse and worse. There was one point last night - aching all over, feeling like the chemo was going to stop my heart from working and me from breathing - that I felt like dying would be OK. And this is the weekly Taxol that is supposed to be OK?
Got a text from my 20yr old just before. Her best friend's mother died this morning. Yes, breast cancer... I didn't know her personally but I saw her around our suburb - pounding out the miles even during chemo 2yrs ago. I know she did everything right to prevent it coming back but it still did. This is the third of my daughter's good friend's mothers to die of BC in the past 2yrs. All initially diagnosed lower grades, all in their 40's, all from our suburb. What the hell is happening to us? This is crazy! Not one of my friend's mother's died of BC when I was growing up - they still haven't... Yet it seems that women my age are dropping fast, and I'm next in line.
Jenn -
So sorry so many of you are having such a hard time.
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Annie: It would be nice if there was a distinct difference between the two choices, making that decision so much easier. You make very valid, important points, most notably - what's more important to you? There are so many statistics out there it's confusing. In the end, it's whatever gives you the most peace of mind. *hug*
Barbie: Missed you! I'm probably going to lose my thumb and first fingernails. It gets a little worse after every treatment. The SEs start sooner, too. I am so grateful for the two weeks in between txs - I don't know that I could be as strong as all of you doing this every week. I'm in so much pain this morning that I told my husband I didn't want to do the last tx - I haven't said that since my early AC days (that seems so long ago!) I just cannot fathom any more of this...
Diane: Thanks for letting us know there's a light at the end of this tunnel - and that it's NOT a truck! :-)
Denise: Thanks for starting the Rads thread, I'll pop over there soon I'm sure!
Jenn: My daughter's best friend's mom passed away a year ago from BC, so suddenly we were shocked. When I was diagnosed a few months later my daughter freaked out - and her friend wasn't far behind her. Then I learned of a colleague dying. It seems like, suddenly, so many people around me are being diagnosed - and some dying - from this disease. How did I never see this before? How did I not know people who had this, or died from it? It's so scary and confusing some times...and it's hard for me not to go to that "dark place" and think, "I must be next..."
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I wanted to take a moment to thank you all for being a source of hope, love, laughter and support as we make our way through diagnosis and treatment - and for still being here even when maybe your treatments are done. At my tx last week I asked my clinical trial coordinator about what happens next - tests, or follow-ups, or visits, or whatever. And she said, "There isn't anything more to do. After your next treatment, you're done."
And that's that.
I told her I thought I needed a "step-down" program, or a supervised independent living situation - something that kept me connected to my MO's office. I know that sounds really, REALLY weird, because frankly I want nothing more than to be DONE with chemo. But I also find I get so much incredible support from the nurses and staff in the MOs office that I'm kinda scared to be out here on my own. She told me I'd go back to annual exams - really?! Can't you, like, just check me out every couple of weeks? I asked about mets and she (a BC survivor herself) told me a great story about ending up in the ER one weekend because the pain in her back was so intense she was certain she had mets - but she had just overdone it retiling her bathroom.
So thank you all for being here, even though none of us WANT to be here. I have never attended an in-person support group because I have you - and you are the most amazing women I have ever met. (Forgive me, I don't deal with with change, I get all teary-eyed). You are all true blessings in my life.
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Really no follow-up Nancy?
My BS is following me every 6mths for a couple of years with a mammogram and ultrasound each year. I think the ultrasound is 6monthly.
My MO will follow me every 3 mths for the first 2 yrs and then every 6 mths for the next couple of years. Because of the clinical trial I'm on (D-Care) she needs to give me a bone scan yearly and I'm pretty sure with all my aches and pains there will be ultrasounds along the way ;-)
I don't know about my RO yet. Oh, and I'm hooked into a gynae for regular follow-up because of a cyst we are watching on one of my ovaries. And, I'll probably have the ovaries out anyway before the end of the year so there'll be follow-up for that.
Jenn
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