Starting Chemo March 2015
Comments
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I'm feeling so bloated too Theresa, even more now than ever and I'm three weeks out from my last chemo. I was doing a little research last night and saw that fluid retention is common with taxotere and some people have to go on Lasix or another diuretic to deal with it. And , of course, it can persist for months after the last treatment. Something about taxotere breaking down capillary type membranes that release fluid that otherwise wouldn't be released. I'm hoping exercise and potassium will help but it's so uncomfortable and frustrating to feel like a puffy mess and the warmer weather isn't helping. Most days now I am leaving work an hour early because I'm just so cranky and uncomfortable.
Also Terrie Marie, "pissholes in the snow" is the most incredible thing I've heard all day.
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Well I had a good day. I went for 3/12 of taxol. (SC that's my fractions). I did my normal stairs up to the second floor. Sat in the chair for a couple hours. My port is still clotting, but she got it going with heparin, and a cough. Got dosed at the end with another heparin shot. I decided to go to my endocrinologist as I'm out of cholestoral pills. They want me to come in for a visit and more blood work which I really, really don't want to do. While I was waiting in my "I'm a cancer patient head wrap" (yes I'm pulling the cancer card) a woman sat accross from me and asked if I had breast cancer. I talked to her and she's a 15 year survivor. Another woman who was somewhere else in this large waiting room came over an shook my hand and introduced herself to me. She just finished in December. Gave me words of wisdom too. It was awesome. In the end my MD still might make me make an appointment. (jerk) I'll find out tomorrow when I call in. Hopefully he will fill prescription until the end of the July because of the amount of doctor and spa visits I make weekly. All in all a good day. Night....I'm feeling a bit crappy for some reason. Not sure what that is about. Probably outside stress and this humidity. Not a fan of the latter. People get S.A.D in the winter. Me....the summer.
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Done with Taxol #5. Home and laying in bed with some bone pain and nausea. No diarrhea yet but my tummy is grumbling pretty loud so I expect it soon.
Feeling very defeated today and went into chemo crying. Partly has to do with DH being grumpy and a lot of other stressors at work and home. I know I should let all that go but it's hard.
I'm going to try to sleep it off and maybe things will be better when I wake up.
Bekah
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loving the bike charm!
I'm manic today! Those 2 extra days of dex are really not going down well. Argh! But on the upside no headache today. Crappy one yesterday.
Congrats terrymarrie. I hope the se's go away quickly for you.
Loving the earrings Katy. How are you feeling now?
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BB- Wishing you all the best for your revision surgery on Monday. I'm interested in all they do and how you are feeling about it, if you're up to it.
TerryMarie and Sloth- sounds like a rude awakening to be done and not really "done". So sorry this is happening, but once again, so helpful for those ahead to let us stragglers know what we have to look forward to.
Carrie, Joanna and Avmom- hope the SEs lighten up a bit soon.
Theresa! The bike charm is awesome. And so very meaningful, I look at that little bracelet and I see our struggles and triumphs all represented there. I hope you get continuous magic from it.
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Sharon, I'd say physically speaking I am making big and noticeable progress with the pneumonia finally. The bone pain is so bad though I can barely move. I am just so over it, I am being quite liberal with the pain meds. Despite which, for no apparent reason, I no longer find it necessary to take the Colace and/or Senekot. The whole bizness has flipped entirely to the big D. And my ass hurts. I don't have a bathtub. But a friend just left for Alaska for 2 months and asked me to pick up her mail and water her plants. She has a huge soaking tub. I will be availing myself of THAT at every opportunity. Hope you settle down from the steroid circle jerk and continue to have some minor relief from the migraines of chemospast.
Emotionally, I am upset and scared of what the implications might be of getting off the chemo schedule. I am equally grateful for the respite. I see no reason why I should pour in poison when I have been so ill and am not fully recovered. It's out of my hands. So I'm making the best of it, and as many have pointed out, I have 4 in the bag, and I'm playing in the bonus round now.
Bekah, I'm so sorry you're feeling so rough at the moment. You've been through a long, horrible time. You need it to be over, and it's...just....NOT. hugs and mojo coming your way.
NinjaMary- what a nice experience you had in the waiting room today. It continues to amaze me some of the really nice people that come out of the woodwork and can say just a few of the right words to really make things better. Unfortunately, so many a-holes also come crawling out, saying all the wrong ones. But today was a good day, and pretty good for me too. I'll take it. I hope you start to physically feel better very soon.
"Pissholes in the snow". LMAO
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Theresa - to what do you attribute to your low SEs other than your great exercise regime and coconut oil?
I'm curious as to why the number of treatments varies so from person to person, i.e. TCx4 or 6 and potentially 7? What do you suppose they use to determine what the gameplan is from the start, and why they would want to add a treatment at the end.
So today I felt a feeling I didn't remember for several months - happiness. I actually stopped for a moment and said to myself "I feel happy!" Bekah, I hope you can have a moment of happiness. You have struggled so hard.
Congrats to all chemo graduates. What an accomplishment for you!!!
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SueH58, I don't really know. I supplement with a lot of magnesium and potassium, do my bike rides, coconut oil, etc. I cut out most supplements during chemo except those deemed absolutely essential. One thing I really think helped me is I did not go through biopsies, etc. when they told me I was BiRads 5, I said cut it out now, no biopsy. So I wasn't worn down by all the testing worry, biopsies, if that makes sense. From the time of my mammogram ultrasound MRI and sentinel node injection, my breast surgeon did my surgery in less than two weeks. She expedited everything. So I think not having to stress for months totally helped because stress is such a killer. And she got really wide margins, I told her cut away and be generous, and she took me at my word. Having no lymph node involvement, and no vascular invasion helped relieve my stress too. And no comedonecrosis. I know none of that is a guarantee that I won't recur or end up stage 4 someday, but I have hope.
I get up every day, do whatever I feel my body can. There are lots of studies showing how much exercise affects chemo recovery, so I push to do what I can.
I also have these wonderful grandkids that I see constantly that take me out of my head every day. So I don't have a lot of time to focus on feeling mentally down when those little shining faces are there looking at me everyday. When they leave, I am pleasantly tired and ready for bed.
And I have my one friend, Cheryl, who sticks through with me everyday. She was a coworker I rode bikes with, but has become so much more. Anything I fall down on, she picks me up. Found my wig lady, has offered to be there to drive me anywhere I need to go, no questions asked. I think all of us just need that one friend. Everyday she says what can you do today? Like right now she is worrying that the bike rides might get to be too much, so she is taking tennis lessons so she can play tennis with me.
Mostly I think deep inside me I will get through this and be stronger when the treatment is done.
I have also resisted all the drugs except the steroids and the Claritin. The one time I took the anti nausea stuff I felt terrible, couldn't poop, and my butt bled. The MO told me if I could make it two days without taking anything, I would be fine after that, and I took her at her word.
But I ain't doing a round 7, that is 100% for sure. I think most MOs go by the book, and I am really not sure this much chemo was necessary for me. They panicked about my negative receptors because there is no Tamoxifen or AIs for me at the end of treatment.
And I focus on my great aunt Josie who had a similar lump removed at my age, and she lived to be 99. Josie is one of my touch stones. I want to be her.
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Theresa I love the bike charm! And I want to be like your aunt Josie too!
Bekah sorry for the hard emotional time - hope the sleep helped.
Molly same here with the restless sleep, first time - sucks!! Wanted to do a lot today but doubt it now with only a few hours of sleep. thinking of filling the Ativan script, anyone take this?
Terrymarie sorry for all your SEs , hope it's gets better soon.
Sloth really fluid retention for how long after? I really feel the bloating also - terrible.
Katy I'm glad your feeling a bit better. You should definitely soak in that tub!
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Maryellen- I have taken Ativan. It's nice to have some kind of drug in this class (benzodiazepines) when you are going through the shit sandwich.
I currently have a script for clonazepam. It's considered a bit less addictive, as it has a slower half life and therefore, less immediate benefit, but longer-acting calm.
I would have my hand out for any drug offered to me in this class, not to take every day, but to have on hand when pain and anxiety start to get the better of you. It's not a pain medication, but I sometimes find when anxiety ramps up, pre-existing pain gets worse, or just seems to be worse.
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I have never been an anxious person in my life until this but I now have a trusty Xanax prescription and take it whenever I feel like I need it. It's way less than it used to be at this point, probably less than once a week. But yeah, fill the Ativan. This is the time! Bring on the drugs!
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Theresa, you continue to be such an inspiration to me. To sum up what I think I read, your positive attitude, fabulous support system, and low stress situation have greatly contributed to low SEs. And I believe that. I thought of going back to work early, but I worry about adding stress to the routine and your post reinforces that.
Hope everyone has a great, low SE day.
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Maryellen, I hear you! Katy or Molly I wish your docs could talk some sense into my docs. I've been trying since January to get something for the anxiety and none of my doctors will prescribe anything. MO said to take a benadryl! Surgeon said to drink a glass of wine!! Seriously, I don't get it, seems like among this March chemo group a script of something for anxiety is part of the treatment plan. I finally got lorazepam as one of my nausea meds so I've been using that in halves when I'm having a particularly rough night, but no nights are easy right now and I wish my doctors would realize that this is a lot to process and a little buffer sure would help in the short term. I keep asking at every appointment just in case I can catch one of my docs in a generous mood! Living alone without the distractions and demands of kids and family during this process definitely has its benefits but it can leave way too much time for worrying ones self down the rabbit hole.
Katy, I see a sparkle in your eye, glad to know you're on the mend!
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Sloth - that's terrible than none of your doctors are willing to prescribe you something for anxiety. I first asked my MO and he seemed a little unwilling, but didn't put up much of a fight and prescribed me Xanax. Later I asked my primary doctor and she didn't have any issues with it. She actually prescribed me a few pills of Clonopin and a few Xanax with extended release to try and see which one works best for me. I settled on regular low dose Xanax and I used to take it the night before chemo and on the morning of chemo. One time I did not take it on the morning of chemo and I was a sobbing mess by the time we got to the infusion center. Now I take it occasionally when I cannot sleep, less than once a week. I will probably take it the night before my surgery.
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I've been able to work throughout this with low SEs and I agree that a lot of it has been becasue I've been able to remain relatively stress free. I've been at my job over 10 years with a certain amount of security and everyone at work has been super supportive. We live in a great neighborhood where everyone has gone above and beyond to help us, bringing food, taking Wil on playdates, and just plain old emotional support. DH is amazing and quite the trooper and my in-laws have been amazing as well. DS has his moments but in general he's super sweet. I don't think I would have been doing as well without all this support.
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I originally got my Xanax through my primary care doctor, too. I just called and said, "I was just diagnosed with breast cancer and I can't eat or sleep, can you write me a small script for Xanax?" and they did it right away. Since then my MO is doing the refills, though.
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Sloth- thanks for the sparkle comment. I am doing much, much better. Lorazepam is in that same class of drugs, (benzos) and you could take a whole instead of a half.
In all fairness, my clonazepam script is from my shrink, not my MO. If you ever decide you want some "counseling" to deal with the anxiety or ptsd aspects of bc, or any c for that matter, it's probably worth it to see a psychopharmacologist instead of a LCSW or something like that. Or do both. I think therapy/counseling is great and it has been of huge benefit in my life.
But you need someone who can write a prescription. You will get help and meds. I pay out of pocket for mine. I am poor and he is expensive, but it's one of the best investments I've ever made in myself. He doesn't just take out his script pad and write. He is judicious. But he helps. I don't have to fight him. He discusses the drawbacks and dangers of high risk meds and monitors me closely. Having cancer in your life changes the playing field. I have been told by my MO even that most cancer patients are not abusers. We don't WANT to be in this position. We want to be healthy. Sane. We don't ordinarily exhibit drug seeking behavior. We are genuinely anxious and legitimately in pain.
We are the reason these meds were invented. (Stepping down from soap box now)
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I think I have a stamp that says "drug addict" on my forehead that only MD's can see. (BTW I'm not)! My BS gave me some xanax which I still have. I have two full bottles of Vicodin from which I've taken two (2) pills. I would love some more xanax just for sleep. When I asked for some Ambien they refused as it's "too addicting". Now I just borrow some from my father, but are you f'n kidding me? I had shingles a few years ago. I asked for pain killers and she told me to take Ibuprofen!!! Never have I been so pissed. She claimed as the blisters had hardened the pain would be over soon. I can't make this up!
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On a completely different topic, I received an anonymous gift of poems this week. I have never studied poetry, and as a general rule, don't "get it". So I have no idea who or why someone would send it to me.
But this one rocked my world.
Is called The Journey
By Mary Oliver
www.goodreads.com/quotes/356684-the-journey-one-da...
I highly recommend investing ten minutes in this
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When I was diagnoised my PCP gave me Xanax and it has helped. After several round of chemo I was having trouble staying asleep. I would wake and be up for hours at a time. My MO gave me Ambien which I was hesitant to take since I worry about being addicted. Once I ran out I didn't ask for a refill. After several days of sleepless nights I asked for more at my infusion yesterday. Slept through the night for the first time in a week. I don't know what I would do if my doctors refused to help with drugs. That is bullshit. I would be complaining as often as possible!
My X-ray showed no blockage so apparently I am fine. Not! The NP says I should really be taking a fiber pill and stool softener. I asked about having the D too and not sure what to take. She said to try both and if I get the D then eliminate one. I guess I have to give it a try and see how this week goes. I am so over this!
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LOVE the poem Katy! Thanks for sharing.
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Ambien is less addicting than Xanax.
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Is anybody out of work on disability? Will they write me out during Herceptin too? I heard a rumor yesterday that my company is going to cancel everybody working from home starting at the end of June, and I don't think I can do the treatments and go in to the office everyday. The working from home part time has been a big deal for helping me get through this process. So now I am on steroids and stressed about work, oh joy
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I'd ask HR. Herceptin alone isn't chemo so I don't think they'd allow you to take disability while on it.
That's one thing that's allowed me to not have to take the time off is the ability to work from home.
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Italy - Herceptin only infusions are relatively SE free, you shouldn't have a problem working during that time. You would just need to have that one day every three weeks with a couple of free hours to get in and get the infusion.
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This made my day...I woke up to babies!!!! Feeling better emotionally today
Baby chicks always lift my mood! DH offered to put a lawn chair out in the yard so I can sit and watch them. I could watch them for hours...
Bekah
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Awww...so cute. I love hearing the sound of their chirpping. Peep-peep!
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Bekah- the babies are so cute! I'm so glad for you. How many
Even gladder you woke up feeling better.
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Oh, I love Mary Oliver! This is one of my favorites:
http://blog.sevenponds.com/a-right-of-passage/empty-branch-in-the-orchard
The imagery is beautiful, and you'll appreciate the way hummingbirds can represent many things here.
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PS -
I'm on FMLA so that my time off for appointments, etc. is protected by law, but I'm not on disability. I'd have to be off for 12 consecutive weeks before LTD would kick in. Since I don't have 12 weeks of sick time to burn, I can't afford to be off for that long. Trust me, if I had the time off available, I'd take LTD without batting an eyelash. I would take time off of work to focus on getting better until I was all done with my physical recovery and was in a better mental state to go back to work.
If you can get it, use it, Theresa.
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