August 2015 Chemo Group
Comments
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Ah, hello Mamiya, I've just worked out you were notdoneyet! Sorry about the skin mets but immunotherapy looks like the next frontier.
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Mamiya, I'm so sorry about the skin mets, especially after what you endured with FEC. I agree with MsBrompton that it's good news about the immunotherapy: seriously, that seems to be a promising development in oncology.
I've been more transparent about breast cancer than I've ever been about anything in my life. I'm not exaggerating, because I'm a private person overall. I'm not sure what happened; something changed that day in that exam room, when I got the diagnosis. . . Honestly, it's a positive change. Would I have chosen this as a way to grow? Hell no. But I'll take the good with the bad, you know?
Re: stomach stuff: I quit the Protonix (which I took daily, starting with my second infusion) about two weeks PFC. I still get occasional heartburn, which I manage with Pepcid if need be. It really only bothers me if I eat too much spicy stuff (which I love), drink too much coffee, or eat too close to bedtime.
My tattoo won't be about cancer. It's just that I've wanted more tattoos (I have two already) for a long time but put it off, waiting for later. Now I don't WANT to wait for later, if that makes sense.
My new thing is that I have weird (and kind of painful, but mostly just weird) cording across my ribs from the revision surgery. But, hell, I got through chemo, so life goes on. My internet diagnosis is something called "Mondor's cord," which I always read as "Mordor's cord," which makes me laugh. . . Fun times. Looks like PT is in my future. Maybe that will help me get back into a regular exercise routine, huh?
In other, happier news, I trimmed my grandpa hair yesterday and now I can see a lot of new growth up there. It's really, really, really silver.
Edited to add one more thing: does anyone have "that friend" who only wants to talk about medical stuff and doctors? I do. She's driving me insane. I love her dearly, but it's gotta stop. . . and I just don't know how to tell her that.
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Kate, I have that friend. She talks about it in terms of "we" as in "we aren't out of the woods yet" and "we have xyz to do next." I just want to scream: "it's not "we" it's "ME", me, this is happening to me!!!!" But of course I don't. It doesn't help that she is more than 20 years younger than me and tries to come up with solutions to problems that I've already thought of way before she could google them... People mean well, I try to keep that in mind.
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My daughter and I out celebrating my 54th birthday last night. As DeeRatz said, this short hair makes it easy to get ready to go out for sure0 -
Celebrating my 54th birthday with my daughter. I love how fast I can get ready to go out0 -
Carolyn your hair is super cute. You look like a hardcore Marathon runner. Mine is just a bit shorter it needs a bit more for me to pull it off as a true haircut look. Then I can aim for the Jamie Lee Curtis look next. Happy Birthday.
MsBrompton bummer about the sporty knee injury. Just baby it a bit you will be back on the road come spring. Wow a whole church praying for your knee. Sure can't hurt.....lol
Mamyia Crossing my fingers for the new trial you enrolled in. Sending super positive thoughts your way
If I have a friend that talks about medical stuff too much I tend to pat their arm and say " I appreciate you sharing that but I am just so overwhelmed and burned out with doctors right now. Lets talk about good things in our lives" It helps but I have one friend who keeps inviting me to her church bible study so her christian friends can pray over me. I appreciate her and she has truly helped me but thats a bit much.
On the subject of Tatoos. I haven't ever gotten one but I have a large scar next to my port where they messed it up in surgery. Seriously thinking to come up with something bueatiful to cover it. Unfortunately it is in a very visual place so I had better love that tatoo because almost every shirt I own is going to show it.
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Kate - like you, I've become completely transparent. I'll talk about my cancer diagnosis to anyone. And I've given my children carte blanche to use the cancer card whenever it seems helpful.
Dee - you are rocking the hair! You look amazing & I'm glad you had a blast at the concert.
Mamiya - sorry chemo didn't work but here's hoping the clinical trial will be helpful!
Carolyn - you look fantastic!
My hair is completely gray & very short. My stylist (from back when I had hair...) said the wispy parts are long enough to color, so I'm going for it this week. I have an event on Friday night & I'm planning on having a dark cap of hair instead of a silver one...still short, only slightly less conspicuous in that "I have cancer!" fashion.
I had my rads marking session & I thought the teeny tiny little tattoos hurt like hell. It's embarrassing how much a freckle-sized tattoo hurt me, and my friends who have tattoos laughed at me when I showed them the small dots. I used to think I might have a tattoo one day, but now I know it will never happen. I'll just have to admire other people's art!
Got 20+ inches of snow here in the D.C. area this weekend, so the roads are suspect and my appointments might be canceled, but the plan is to start rads this week.
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Mamiya - I'm sorry about the skin mets. Sending positive thoughts for the clinical trial.
Carolyn - What a beautiful picture! You look amazing.
My hair is still mostly white, with some dark hairs around the sides. I was already pretty silver before this happened. I had visions of some kind of chemo miracle turning my hair back to brown, but it's looking like I will have to give up on that fantasy. I'm almost 4 weeks PFC and it's getting long enough to look like a decent amount if it had some color. So I'm thinking about using some demi color on it soon.
Those of you getting tattoos, I hope you'll come back and show up pictures of what you get. Exercise Guru, I would definitely consider a tattoo under those circumstances.
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Mamiya - I've found that I've become a bit superstitious too. Every time I go to my breast care center, I never park on the same side where I received my bad news. I wish you great success with this clinical trial. Please keep us posted.
Kate - My eyebrows grew back pretty quickly. Here's to hoping yours does as well!If anyone is interested, I discovered this book on Amazon and it's been a good read so far: The Whole-Food Guide for Breast Cancer Survivors: A Nutritional Approach to Preventing Recurrence
I just received a postcard in the mail from my breast surgeon's office telling me I'm overdue for a mammogram. Um, did they forget I HAVE NO BOOBS?!
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Kate asked "does anyone have "that friend" who only wants to talk about medical stuff and doctors? I do. She's driving me insane. I love her dearly, but it's gotta stop. . . and I just don't know how to tell her that."
Yeah, I've got one. Shall we introduce them? (mine's a 'he', and he really thinks he's helping...)
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I'll have to check that book out, socalgirl. I've had a terrible time on the Arimidex, and I feel like giving up. I have a history of rectal cancer, and the diarrhea the med is causing has really kicked my butt. I stopped it over a week ago and I'm still having problems. My MO knows, but I don't feel like I'm able to get through the phone maze well enough to really describe how bad it's been. I see her on Feb 16. I'm waiting until then to come up with plan B because her relayed suggestion was to stop for a week and challenge myself again.
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Carolyn, your hair looks great. So sorry to hear that Armidex is giving you fits. Maybe you could try another AI?
SoCalGirl, I have eyebrow stubble and some CRAZY, OUT OF CONTROL rogue eyebrow hairs that are doing whatever the hell they want, all over my brow area. I'm to the point with all of this where all I can do is laugh. Between grandpa hair and grandpa eyebrows. . . Well, just call me grandpa.
I have that book on my Amazon wish list.
A friend of mine (not the doctor-obsessed one) just gave me a copy of Radical Remission, which is interesting but also chock full of what I call "woo-woo sh**." Don't get me wrong: I'm all about yoga, reiki, energy work, crystals, and healthy eating. . . . But when a book tells me that the chemotherapy and radiation I have or will endure is "not going to cure anything," I want to chuck it into the fire. If snake oil worked, oncologists would prescribe it. ARGH.
I got my rads tattoos the other day and asked the tech if she was planning on carving her name into my ribs, like a prison tattoo. She told me not to laugh while she was holding the needle. I guess I was expecting a tattoo gun! I didn't feel mine at all, but I have a pretty high pain threshold.
MsBrompton, let's introduce them! I talked to mine on the phone today. She wanted to know all about everything. She means well, for sure, but MY GOD, there is more to life than cancer.
Haha: I sound like I have PMS; sorry to be such a grump! Anyone else's ovaries coming back to life? I think mine are, which probably means ovarian suppression is in my future. . . .
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Kate - I totally agree with you!!! I'm a Reiki Master as well as work full time with Autistic Children. Its about the balance between the alternative and medical. Of course you need chemo, rads meds absolutely! The other stuff helps on a mental level...the 2 together is what its about!
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Yup, have one of those -- "that friend". he's the husband of the lady I mentioned (about her Dr finding spot in her lung). He likes to also talk about his case from years back... blah...
My MO still thinks I would get my period back. I think they are trying to come back -- few times there was that fullness/ pressure like when you are in the middle of the cycle. I emailed my MO about the Echo result & mentioned to her what s/e I'm having from tamoxifen. & she replied, "look like they are still not functioning yet"
I don't know if mentioned before, when they put the picc line in, they need to get an x-ray, & they found some blur on the right. So I had to get another one. That x-ray still didn't come out clear, so MO ordered a CT mid Oct, which was mostly clear (except she said a slightly enlarged thyroid on right, a 2mm dot on the upper lung on the bc side - which she's not worry). But there was "unusual tenting" at the right atrium. so she ordered the Echo. That appointment took forever (Mid Dec!) So finally, ... everything comes back good, my heart's functioning perfectly (so what's with the "tenting"? maybe recovering from the picc?). Anyway, one thing was found, that I have a small hole in my heart, the one between the upper chambers that supposed to close at birth.
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Superius, invite us all to the wedding! We'll bring donuts.
Kate, my period is back. I was a horrible, awful person to be around for about two weeks--now I know why.
I got my first tattoo just weeks before diagnosis. Was already planning a second. My sister wants to do a tribute tattoo with me, but I'm not sure. If I do it will be for HG and PTSD in addition to BC.0 -
I think my period might be trying to come back. I been having the cramps at times but nothing doing so far...
My legs seem to be going a little crazy. They are red like a sunburn and itch and god forbid I scratch i will have to scratch for a long time. Its like poison ivy. One leg is bumpy too the other isn't. I also get zings of pain that last a few seconds then gone... Looking on Dr. google I saw blood clots so now thats my newest obsession even though it looks like a rash and itches like a rash and there is no heat or cluster or the blood clot symptoms. I am trying not to cal the doc and sound like a loon because my regular appt is soon but if I feel like I am correct and this is not just my latest irrational fear I will of course call...
Now that the chemo is over, I think I am more anxious about it being somewhere else in there they don't see or waiting for another shoe to drop. I am almost half done with radiation so I don't have the distraction to not go there and get all worked up... but I am still glad chemo is done.
Hope everyone is doing well... plugging along trying not to freak myself out too much...
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Gooseberry, I had itchy legs, too! I swear it was the hair coming back. It was a weird, eczema-like rash on both shins that lasted for 2-3 weeks. My left leg was bumpy but my right wasn't, though they both itched like crazy. It's gone now.
I'm kind of enjoying not having my period. If my period comes back but I keep up with the night sweats, I am gonna be one heck of a difficult person to be around.
Superius, so glad your echo came back okay!
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Gooseberry - I feel like my period is trying to come back too, but I'm on Lupron shots (every 3 months) so I don't know what to make of the crampy feeling I've been having. I also find myself waiting for the other shoe to drop. My abdomen muscles have been achy so of course I fear the worst. Every ache or pain is amplified by 100000 and my paranoia is through the roof. I was going to ask all you ladies how often your mind goes down that dark hole. Some days are good and some days are bad. I know it's all par for the course, but sometimes I feel obsessive.
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I'm 47 and I hadnt had a period for 7 months pre chemo, Chemo brought it on for a few cycles, then it stopped and I havent had it since. MO said at my appt yesterday that I am in menopause, it will not come back now. Am glad, though nightsweats have been horrendous through Chemo!!! unbearable, so I have been prespecribed Epexor where there was a study that proved this reduced them in most women, though this meds is not used for that. We shall see!
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I had me pre-op appt for my exchange surgery today. My Dr said my ovaries aren't totally shriveled up but pretty close. I haven't had a period since Sept. I thought I was going to get one but then started on Tamoxifen and haven't had any cramps since then. I sure hope I am done. I don't want to have these hot flashes go to waste and have to go thru this again.
My mind goes to the dark place quite often. It sucks big time but it is part of the process. I wish I knew 100% that I would never have to worry about the big C ever again. I don't think we will ever not live in fear....the key is to try to live again. I was feeling pretty blue before I went away. I feel much better after my getaway/change of scenery. I just need to have my exchange surgery and hopefully I can move on with my life.0 -
Its funny because I was the biggest hypochondriac before all of this... Like really bad lol... But finding out, surgery, chemo I never had any crazy fears... So I thought that maybe I was past that... but now as soon as all those distractions are gone here I am thinking its here its there its everywhere... I have blood clots in my legs, etc etc. I don't think I will calm down till lots of time passes. Its not hindering my ability to live life for now so it is what it is...
My legs are really driving me crazy. Getting redder but that prob because I cannot not scratch it... I think I felt comfort in seeing the docs so often having all those appts. now I am kinda on my own eek... Only see them once every 9 weeks instead of every 3. I guess this too shall pass though... need time and get adjusted to the new normal and the balancing and controlling the fear. I am bound and determine to live my life and that helps a lot.
I am still waiting for my eyes to quit twitching too...
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Deeratz - I feel like you, emotional roller coaster, feel I need to get away but its just not possible in my position being a single parent. Just have to push through as best you can.
Gooseberry - Its so super normal to feel that way, especially as treatment closes and we readjust to know doc visits, its like that safety has gone. It is time, and you do just learn to let it all go to a degree and just live.
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SoCalGirl, I have been feeling scared off and on since I felt the lump in my other breast that turned out to be normal tissue. I had rectal cancer at the end of 2013. Stage one. Surgery, no Chemo or rads for that one. Yesterday I saw my PCP and she mentioned that since both of my cancers were adenocarcinoma I should ask my MO to screen for other areas that are high risk for them.
That made me feel like a ticking time bomb. Even if she screens me and I'm all clear, I feel like I need to get to the root of why my body created two similar primary cancers. Is it my diet? My emotions? Both?
Still dealing with diarrhea from the anastrozole, so I can't be as vigilant about my diet as I was before starting it. I was packing salads for lunch and eating whole grain oatmeal every morning, and now I have to stay low fiber to get this under control. PCP recommended everything I'm already doing. She did say florrestor is probably a better probiotic than the one I'm taking, so that's on my list.
DeeRatz, glad your getaway helped your mental state. I think that would be a big boost for me, too. Maybe over spring break.
Hugs to all. On we go
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gooseberry, I hear you. BC really got me thinking about all those years I wasted being a hypochondriac, you know? The irony, in my case, is that I'd pretty much overcome the health anxiety thing, and then found the lump in my breast. The rest is history.
Have you tried cortisone for your legs? And, seriously, if it doesn't clear up or gets worse, or even if you're just concerned about it, call your MO. S/he can at least prescribe fancy cream for it.
I'm scared sometimes, too. DeeRatz put it eloquently: "I don't think we will ever not live in fear....the key is to try to live again." Yeah. Three cheers for that. I've been feeling pretty blue lately, too, but trying my hardest to LIVE, to be present and mindful in the moment, etc. . . .
I have to go see my surgeon this afternoon to have him look at the weird thing running down my ribs, from my scar revision to my abdomen. I'm getting to the point where I start to feel sad whenever I have to go to the cancer center, which sucks given that I start daily rads a week from Thursday and have Herceptin every three weeks until August. I just want it all to go away. Sigh.
Man, I need a serious attitude adjustment. All through chemo, I was little miss positive. . . . There really, truly is an adjustment period afterwards, isn't there? Add to that the damn hormonal imbalances and weird sleep schedule (night sweats have been really bad this week), and BAM. A recipe for disaster!
Okay, venting time is over. Gonna go do some stretches and then head to therapy. Lol.
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At Thanksgiving Mass few months ago, the priest said something that stuck in my mind, he said, "thanksgiving is good, but Thanks-LIVING is even better. " What he meant was, when we give thanks, we should also take actions, to live our lives to the fullness & to serve others. Think of the story of talents - the Master gave his servants different talents (money), 2 of them invested it & have double in return, the 3rd said thanks master & buried the money.
Sometimes I do freak out, with any aches & pain, they pass pretty quickly.On the other hand, some of the dark thoughts are quite amusing. Being church musicians, we see lots of weddings & funerals. So at a wedding last summer & when they exchange the vow, my mind went, "In sickness & in health, hey if we survived the in sickness part, do we get free passes for the rest of our lives for other difficult stuff, like Monopoly?" Or like, "what music do I want when it's my time to go?" (through the years, I have people randomly telling me what hymns they want at their funerals); Or, "If I'm first to go, would it be ok to have worrywart play for the service? would he be ok with that? Would it be too much?"
And Musosgirl will find this last one amusing: I learnt recently from an older friend that her daughter was adopted, she said she's glad because there's lots of mental health issue on her husband's side & skin cancer on her side. She is also the one who kept bugging me "you & worrywart should get married & make music genius babies!" So when I learnt about chemo, I said, "sorry Nance, there goes your music genius grandkids." But anyway, when I learnt that her daughter was adopted, my dark thought was, "geez Nance, aren't you glad we are NOT together, cos we would pass on some bad genetic materials" (WorryWart's dad passed away from colon cancer, & he had to start screening couple years ago at 40). I really have to find a way to stop her, it's getting annoying, now her thing is "you would make a good wife to him." ... I'm quite content just by myself, thank you very much (& you can quote me on this).
edit to say that when I got the Echo result, my funny thought was, "Oh I have a hole in my heart, THAT's why I'm so clueless about matters of the heart! They just pass right through!"
That makes so much sense!0 -
Oh superius! It is never good when people get pushy. I am so enjoying this little journey the two of you are on but glad you are happy and confidant all on your own. It would not be fun if you felt pressured, annoyed, or disinterested.0
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Just wanted to share these links with you all: Little Pink Houses of Hope and Camp Kesem. These have probably been shared elsewhere on this site, but I just heard of them, so I thought maybe some of you hadn't either.
Little Pink Houses of Hope have retreats for cancer patients and their families.The cost of food and the retreat is all paid for, but guests have to pay their own transportation. You have to fill out an application and then they select from all the applicants. Camp Kesem does summer camps for kids who's parents have had or have cancer and the camps are free of charge.
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So. . . How's everybody doing?
I start rads on Thursday. My hair is coming back. I feel pretty good, all told, especially given what I felt like a couple of months ago!
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I will start rads February 22. My hair is coming back on the back and sides -- I really want the top to start growing. The best news is that my energy has greatly improved in the last week! And the scale is finally moving down instead of up. The weight gain that came during Taxol really was getting me down.
I hope everyone is doing well.
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Hello all. Not sure whether to lower the tone or not, so I will :-). I kept the hair on my head (cold cap) but delighted to hear about those whose hair is coming back. I'm pleased I've got my pubes back, but - calamity - instead of coming back curly they've grown straight, like a fringe! Wondering whether this is the 'new me'... #cancerhumor
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