February 2012 Chemo
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Hi Everybody,Have not posted in quite some time, but you guys have been busy! Just read through about 10 pages of messages, and sending out good vibes to you all. It's such as blessing to be able to touch base with people going through a similar thing.I had the second infusion on 2/13--I'm doing 4 AC, 4 Taxol, so halfway through the AC. The side effects have been relatively minimal, thank goodness, although I do tend to feel tired on day 4 after all the steroids wear off. The second treatment actually was easier than the first, which is making me wary of #3-- for some reason, I think that one is going to be a bugger.This week was Bald Mommy week. I have a 10 year old boy and a 12 year old girl, and I've tried to get them involved a bit in the hair stuff, since that's going to be the most obvious outward signal that something is going on in the Hildy Household. It's been difficult, but ultimately I hope the kids will be okay with all this follicular folly. For what is is worth, here's what we did.My daughter several weeks ago decided she wanted to donate her hair to me, so she had it cut and we sent it to the poeple at Hip Hats with Hair to make an underhair to wear with hats. It was such a wonderful thing for her to do, and I tear up everytime I think about it. Then off we all went to the wig place, which was staffed by the most wonderful women; we picked out a regular wig for general wear. They will style it and cut it to match your style, and they'll do the whole hair removal part of things as well.I then scheduled the head shave for two days after chemo 2.The night before that, my kids gave me a fauxhawk--this was a gift for my son, who wanted to contribute something funny and humorous to the whole mess. It ended up being very cathartic, as I was quite sulky at the beginning of proceedings and we were all very much sillier by the end. When I went to the wig place for my head shave, I took along the halo wig with my daughter's hair, and they are going to color it and style it to match the regular wig. (and they are doing it for free, because they loved the gesture so much. I am so very grateful.)So. I have been walking around with the wig for several days now, and it is definitely a confronting sort of thing to do. My son has been more curious and verbal about the whole process--the chemo nurse warned me that boys often have more issues with this, and it seems so. He wanted to see my hairless head (showed him a picture), and feel the bristles (still have hair coming in for a bit.) and has made several remarks about my wig not feeling like real hair. And that's is all perfectly fine--whatever gets him through the night, as the saying goes.This is the only issue that has really caused me to weep down my poor husband's shirt front, and he has been a rock star about it. In general I am very positive about this whole thing, but every once in a while something has got to give. I just don't want to deal with an invasion of privacy, so until I get more comfortable, I'm going to stick with the wigs.But we are coming to terms as a family. It's just that right now I am a bald frankenboob hottie (I had a mastectomy and now have a TE in until chemo/rads are over) rather than my normal state of Heidi Klum hotness. (I might be lying about that latter state of hotness.)0
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Hildy, what a wonderful story
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Good luck to bwah and everyone else starting treatment this week.
Every time I think I am feeling better, something else pops up and kicks my a$$. Thursday was awful - super achy (especially the top of my neck), zero energy, felt like a slug. Felt really depressed too. Not sure if it was because of being day #3 out from chemo, or from the neulesta shot on Wednesday morning? What do you all think? Anyway I am definitely taking that day off of work next cycle. Yesterday I was feeling not great but much better, less achy and mood was better, but then last night I was up all night with bad diarrhea, stomach cramping, and nausea (meds dealt with the nausea before it got too bad thank goodness). I am staying in bed all morning, maybe all day. Right now watching "The Wedding Singer," one of my favorite movies. Great movie with great music.
Oh and while I'm whining, my face and chest have pink splotchies all over, and I'm getting painful whiteheads all over the creases of my nose. Least of my problems, but still annoying.
I am so greatful for my husband taking care of me. I don't know how I would get through this without him. All my family is 1000+ miles away. Bless our family and friends for being there for us.
Oh and my lymph node biopsy came back benign! I want to know if that means I can skip radiation if I get a lumpectomy. Have to ask Monday but if anyone here knows, let me know.
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myleftboob i meant lymphademia
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Christina, that's great news about the biopsy! Big thumbs up!0
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Thank you hildy!! I lost a ton of hair in the shower today, I know I'm just a few days away....I keep saying and believe that I will be relieved when it is done, too much anxiety worrying about it. You have a wonderful family
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firtscall;
wow- guess i don't dare whine about anything today!! seriously. God is good!
tho that is how i feel today.
i am so jealous of all of you together in the DC area-how cool that if we have to go thru this yo can go thru it together! sip some tea and think of me! (sorry-could NOT resist!!!)
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So behind in responding and even reading this morning ... but wanted to share some resources that have been helpful!
I am a huge reader and much of what I have read about treatments, etc. I preferred to find online because there were more current resources online than in books. By the time a book is published about current treatments and therapies ... there is so much more information out there. Not that I didn't also read books about breast cancer, reconstruction, chemotherapy, etc.... however, but I'll have to post those another time.
First: a website. The Scar Project which was an amazing project of photographing and telling the 'story' of women after mastectomies.
http://www.thescarproject.org/
Book: Turning Heads: Portraits of Grace, Inspiration, & Possibilities
editor: Jackson Hunsicker
This one has to do with the hair side-effect of chemotherapy. The portraits are incredible and the stories ... well, you know, each of us has a story. (And when you read about the hula dancer who waited to cut her hair and then was surfing for a cause ... you will be reminded of the story of the woman at the athletic event with the high winds.)
Book: After Cancer Treatment: Heal Faster, Better, Stronger
author: Julie K Silver, MD
Just picked this up the other day at the library. There are lots of books out there about diet and exercise and recovery. I was struck that Dr. Silver was a survivor herself, the recipient of the 2006 American Cancer Society Lane Adams Quality of Life Award and that the book is a Johns Hopkins Press Health Book. Beyond that ... the book is applicable pre-, mid-, and post- cancer treatment, even though the title is After Cancer Treatment. I'm only on page 39 and I'm already quoting her and quoting her quoting others on my facebook page :-)
Here's a gem from today's read:
"In the realm of time there is no aristocracy of wealth, and no aristocracy of intellect. Genius is nevr rewarded by even an extra hour a day...The chief beauty about the constant supply of time is that you cannot waste it in advance....The next year, the next day, the next hour are lying ready for you, as perfect, as unspoilt, as if you had never wasted a single moment in all your career." - Arnold Bennett (How to Live on 24 Hours a Day) quoted by Julie K. Silver in After Cancer Treatment, pg. 28
Hugs to everyone!
Diana
PS (I am IRON woman ... raised my level 2.4 points in a weeks' time with iron rich foods and only 4 days with a supplement - LOL) ... Now I'll just keep on keeping on the natural way :-)
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Update:-
I stupidly tried a stretch while lying on my side, and popped a little bit of my scar open. I went into panic stations for a while, but it quickly started healing back over. I'll get my GP to look at it tomorrow.
I am going to ask my GP about putting me on Metformin. I have T2DM which has been diet controlled but I think the chemo and steroids might make things difficult for me over the next six months. Also, it looks potentially useful as a breast cancer treatment. There are currently trials underway.
I am scheduled for surgery on Thursday to get my port installed. Then I have a heart scan booked for Friday. And then I start chemo the following Monday. Scary stuff!
ladyfighter:-
I know what you mean about others not really understanding how you're feeling. While it's nice to be told you look good... it seems to ignore what is really going on.firstcall:-
I'm so glad that your port sorted itself out!gritgirl:-
Thanks for the link you posted! I'll check it out more later.
Hildy:-
Your story was so lovely to read. Thank you.0 -
Hildy thank you for your vulnerability with us in the community and sharing your very touching story. What a sweet dear daughter you are raising! Tears in my eyes over her love for you and your love for your children and your husband!
Through it all your strength resonates dear one. Hope that that does not offend. It is not meant to suggest that you must be strong for your children or your husband ... more that I can see that underneath it all you are a Steel Magnolia! It's always all right to leave tears on our husband's shirt fronts ;-) What a rock yours must be!
Love,
Diana
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Hey there gritgirl!
You better believe you can cry and not worry about being tough for someone else!
I can't imagine all those sticks in your port ... that's too much for anyone.
Love your shirts!!! Especially the 'uppity' one ... Might have to steal it ;-) Whatever will we do with cocktail umbrellas and shirts we are designing? Although I haven't made any myself -- I buy every breast and boob and bra card that I see. And I see a LOT of them. I'm like a magnet for these breast cards. My husband just shakes his head every time I show him a new one. My girlfriends are laughing their butts off (which is another story entirely) and we are all having a grand time.
Feel a HUGE HUG!!
Love,
Diana
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fristcall - you rascal ... you would have a port that decided to reposition itself!
Seriously - sorry that you had to go through all of that but thankful that it took care of itself and that you see the Lord's hand in the miracle. Oh my. I can only wonder why it is that he wanted you to wait another day for your chemo :-)
Hope you were able to rest comfortably. I think you mentioned somewhere that you have three girls so are surrounded by the females. I have three sons and my husband so I am surrounded by testosterone ... although with two away at college right now, there is less than usual!
Feel a hug strong man!
Diana
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Christina - I had clear nodes and margins and I am doing chemo and radiation. I don't know if there are exceptions to this.
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Diana, I can probably send you the link to order the one I designed. It's $28 for just one. Or I can order 6 and the price goes down to 17 if others want. I've had to push for good care so I earned the label uppity.
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Its an amazing time....Here I am, just finishing my last bag of Chemo for the day. So far so good. Treatment number 1 almost in. I really appreciate everyones encouragement. I never wanted to have cancer, but I will say this....some of the nicest people I have known have been my cancer patients. Its nice to have this group for support.
dltnhm..I mentioned that I have three daughters, when talking about the gender thing. I also have 5 sons. I have 3 kids in college. I even have a son getting married in Aug. By then I'll have my new hairdo! I'm trying to decide when to get my hair cut. It sounds like about 2 weeks into this. Im thinking of a short (military type) cut and then see what happens
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Firstcall well done I'm glad your ok. You have a very busy family I thought I was busy with my three girls. Hope you have good sleep and no counting sheep haha.
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Christina - radiation ALWAYS goes with lumpectomy, node status notwithstanding. So even if you have negative nodes, you will have radiation with a lumpectomy. Hope that helps.
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Galena- I hope you heal fast. And I have been on metformin since i was diagnosed 3 years ago. I havwe been having trouble with my blood sugars during this first treatment with the steroids. I went all the way up to almost 400. Yuck. I had to call my doc and he increased my meds while I take the steroids. So I think you should check with him.
First call- so glad things went smoothly for you today - it should after all the trouble you had yesterday! Hang in there. ( I have 5 brothers and 2 sisters- You had a busy busy household!)
I am feeling wonky - kind of slow, not really sick, but just different. taste buds are a bit off, but not too bad. Couldnt sleep much last nite even after 2 benedryls- may have to go to a sleep aid, only got about 4 hours.. Got the house cleaned up on the rest of the steroid today before crashing a bit. We shall see.
Grit girl- there is a bood about uppity women- can't remember who wrote it but that is the title. You may have to search for it. LOL
Dltnhm- thanks for the book suggestions.
Christina= hope you are doing better today.
Mrthdee- hope you are also ok.
And for everyone else on this board, Much Love and small SEs!
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I finally start on the 28th....what do you all recommend bringing to chemo day?
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Had my first day of Chemo today. Things went well. Woke up early to a windstorm, and power outage. Because of my port difficulties yesterday had to move chemo to today (Saturday) and thus had to have it at the hospital, rather than the cancer center. It went fine, but things moved slowly. It took most of the day. I wasnt going to eat today, because I didnt want to wear it. However, the nurses ganged up on me, and I had a bowl of oatmeal, a sourdough muffin, and glass of juice. It stayed down ok. Starting antibiotics tomorrow, and taking my temperature regularly. I kind of feel like I'm looking over my shoulder, wondering what is next....but doing ok. Several of my kids called to check on me, kept my mind occupied. I really appreciate each of you here. I read through the posts here as my chemo was infusing. I hope everyone is doing well.
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CHristina, I had a lumpectomy on 1/20 and then had radiation after even though I had no lymph node involvement and clear margins. If you are a candidate, find a radiation doctor that does the SAVI for twice a day 5 day radiation. I had that done and I am so glad I did. I'm small so it hurt going in and coming out more than others, and it was uncomfortable while in place, but I was able t o work the entire time and it was much less downtime. Not everyone is a candidate, but if you are I'd at least look in to it as an option.
Good luck!
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Just found this great blog post for free stuff for cancer patients and links to financial help. Very cool. http://www.butdoctorihatepink.com/2010/02/free-stuff.html
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Hi all: Had my 2nd AC on Thursday and just too tired to read or comment on posts. Sleeping lots since then. In between, we celebrated two birthdays (my daughter and then her daughter (age 15). Those were good days.
My personal hair story now: I never got the short haircut as I was sick that day and cancelled. Now, it's scheduled for this coming Tuesday. Last night, sleeping, my head hurt. Like if I bumped it hard and it is bruised. (Not the same as a headache). Anyway, I reached up and pulled and clumps of hair came out. So, I'm starting to lose it.
Do I even bother with a short haircut? Or just buzz it off? And how long does this bruised feeling last? I can't lay my head back in my recliner. I have to turn my head to the side. Once again, tears are being shed. More because I am tired and I hurt. not so for the hair.
I hate this. I'm tired of being brave and strong. I so want this to all be over with. (And I'm at a point where I need to try and get back to work soon. How will I ever be able to manage that?)
Sorry, all. I'm having a pity party of one right now. Just had to vent.
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Fldreamer. Got clippers in the house? Just sheer it. Mine is falling out.big time now. The scalp hurt only lasted a few days.
It does suck. Keep on crying. And it will be over before you know it. The.chemo is healing you.0 -
Fldreamer - I am right there with you, I am a day or two away from buzzing it. I've been wearing a hat, it keeps me from messing with it. I am not brave and strong, I'm just living my life. I cry when the tears come, and laugh when I can. Please know this little part of FL is cheering you on and will welcome you!
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Sissyd
Not sure what regimen you're on but it seems to me the 1st TX is the longest day. They don't prepare for you really until you'r there in the flesh and the infustions go slow to make sure you don't have any reactions. To me the day dragged. Next time I'm bringing my laptop, my earbuds so I can watch some TV and some more reading to pass the time. My DH came with me so I was able to send him to grab lunch, a newspaper, a tea and have a lesson in Cribbage.
Next time I'm going (myself) to bring some snacks, mabey a sandwich, water and a travel mug full of Green Tea and somemore reading material. While I had a really nice guy sitting beside me its seems no one is all that chatty, although super polite and acknowleding. I love to chat but waited for someone else to chat first, you never know how someone else is feeling.
One weird thing I did and this is just me. I didn't attend chemo school, I just went with all of the advice my MO and nurse and of course the people here on this site. When I was done my 1st cycle on Friday, I was one of the last to leave. On my way out, there were about 30 people waiting in lobby of the chemo lounge to go through the paces. I'm sure it was patients and their sig others/family. They looked so scared and it was so queit even with that many people standing around. I'm actually glad I didn't go that route, would have been too overwhelming for me at least.
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fldreamer
While nothing's happening with my hair (yet). I am a hair twirler when I'm tired since I had hair! Everytime I catch myself I keep thinking I should put a hat on or something because I just know this is where I'll end up losing it first. I have my first wig appointment this coming Friday and once it really starts to go I'll either buzz it myself or have the wig lady do it for me. I would have my hairdress do it, but he's more emotional that me! Along with that he doesn't have a private room and I know many of his clients personally. Don't feel like being on show you know?
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Hi ladies,
Thought I would be starting treatment in February but because I needed to do some more scans and they was no available time by 23/2 I now will be starting in March.
I had my port inserted on Friday and i am feeling pretty sore, that I was expecting but I am having difficulties swallowing and it feels like a big rock is sitting in my chest, I even get this discomfort in my chest which I can hardly explain but it feels more like my heart is racing when I try to lie on either side. Did anyone else experience these discomfort and can share....please!!!!!!
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I just picked up my steroids and anti nausea meds. since I start Wed. Is any one else taking Prochlorper/compazene for nausea, I read the side effects and it is also an anti psycotic. I"m freaking out about taking this drug since there are so many crazy SE's especially seeing spiders, making you hyper and since I have insomnia already the steroids are going to be hell without adding this drug. I know I need this drug for nausea but do they all have such SE's? I don't really have anyone to talk to about this stuff, my husband just says "You'll be fine, don't worry" and I just want to punch him, lol.
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Jag110, I haven't had any problems with the compazine. I only take it when I do feel nauseaous which isn't often.
The steroids have been my main issue and I tell my doctor about the SE's and we adjust my meds. I take 1 decadron the day before, 1 the day of, and 1 the day after. Because I also get the decadron in the IV during, I'm going to ask my doc if we can cut the one decadron the day of. The night of my chemo I am always up all night and that is nuts. Everyone reacts differently to meds and my reaction to steroids is big. Methinks I need less of them.
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