August 2015 Chemo Group
Comments
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Good for you for speaking up. I've been fortunate not to have any of those conversations so far. Everyone has been supportive and very complimentary regarding my upbeat attitude and I usually always present a smiling face.
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This is worth reading:
http://www.huffingtonpost.com/leisha-davisonyasol/...
re: putting on a smiling face . . . That's me. I do it daily. And, most of the time, it's genuine. But, yeah, there are days when I FEEL gray inside. . . .
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A happy picture for those approaching final chemo (and those who are still a few weeks off).
Hugs to those who are struggling!
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I'm never a pink person. I don't think i ever wear pink even when i was a kid. But I jumped in & donated when my friend told me about her Swim. I told her I was "sharing my blessing"...
Working for the big state university system, I have quite a bit of vacation & sick time, I have the "luxury" to take time off most of the time off. And along with good HMO (a university definitely big enough to get good deals), everything is being taken care of by my insurance (I have "Emperor Forever"
= no outside insurance company to deal with to get thing authorized, whatever Dr said & that's it). All the tests, genetic counseling, Recon or prosthetics, everything related to the diagnosis is covered. The whole team was ensembled once i was diagnosed. All my doctor appointments are lined up & scheduled. The only thing I need to do is to show up! And the resource, the advocates. I didn't realized how many people I know from church are doctors & researchers. I know my surgeon got checked out & got "bumped into" by my church people. My Oncologist probably got checked out as well. I have someone in Radiology that triple-checked at her weekly conference, to make sure the treatment my MO prescribed was on target. And then there are researchers who have been doing cancer research in the past 30 some years; so most likely in some way, they also contributed indirectly to the care I am receiving. And I found out, quite by accident that someone I know was involved in Herceptin & BRCA research.... serious.... my jaw dropped... these are people who host choir parties & stuff, they are more like aunties & uncles...
So yeah, when my friend told me about the Swim (she did't know I have BC at that point, but then i told her. And she had my name on her back), I jumped it & donated. Like she said "It doesn't mean that the privileged are free from suffering or cheat fate. The best resources and an abundance of love are often not enough to vanquish cancer. But, they make the journey a little less terrifying."
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Glad many of you are coming to the end of your treatment! I can't say I am not little jealous as I have my last TCH Dec 7th and that seems soooooo far away and because this is the nasty chemo I never remember that I have to go every three weeks after that for an entire year till next august. Radiation too and it seems never ending... but I know it will end so I try and focus on that. #3 tomorrow, half done with the nasty! Here is to little to no side effects and hoping it doesn't begin to start really kicking my butt like others say it does as rounds build up. I been ok with side effects, manageable, but this week after every infusion just makes me feel mentally down. I hate that part. I just sleep all through the chair and try to sleep as much as possible the next week too... Everyone thinks it the chemo and its part of it I am sure but I make myself sleep. Its a way I cope and try and make the time go by a little faster. I think this all messes with me more mentally than physically for now at least and these steroids are the devils laced candy. I hate them. I feel almost normal the 3rd week, then hate knowing I am going to ruin it lol. So I will see everyone in 7-10 days after my long slumber. Just pretend I am a disney princess
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I hate the steroids as well. I just tell myself that without them I would be very sick. They have helped keep my side effects minimal. I take Ativan on the days that I take them and this helps me sleep. I do tend to have crazy dreams for about a week after I come off of my steroids and infusion. I sometimes take Gravol(Canadian anti-naseau OTC) and that helps to knock me out and stops the dreams.
So my biggest complaint round 3 are my hot flashes. Holy crap they are terrible. Sleeping last night was brutal. I had to open our bedroom window, it is below 0 here and freezing. I had my head covered, head bare, body covered, body uncovered. It was a struggle all night. Power surges by my body...chempause you suck, I think I would rather have my periods back and I thought I would never say that......EVER!!! If I still had a head of hair I would be in real trouble. At least I can cool that part of me Down quickly.
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DeeRatz, we lead parallel lives. I'm right there with you, on all counts.
I think I might be fighting the plague that's going around on campus. This is my first time with this while in chemo--any advice? No fever, but I'm hoarse and a little congested, kind of tired (not chemo fatigue--just tired), and I have a swollen (and sore) lymph node in my neck. I'm not supposed to take any of the things I'd normally take (vit C, astragalus, echinacea, etc.). Do I just rest, keep taking my temperature, and hope for the best? Any advice?
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Re: My evolving relationship with Pink Everything ...
I love purple, but don't usually wear much pink. And the whole pink-ribbons-on-everything in October always bugged me because seeing the slick packaging and obvious marketing tie-ins kind of made me ill ... but the other day I saw a pattern online for an awareness bracelet using bead weaving, which is something I've been wanting to learn, and before I knew it I was at the craft store for something else, and gravitated right over to the seed beads so I could make myself a ribbon bracelet. If it turns out okay, I'll probably make one for each of my friends with BC as well. However - no offense to Komen and ACS supporters - I am a big fan of Stand Up to Cancer because of their lack of ties to the "treatment industry" and aggressive emphasis on research and prevention.
Had a long talk yesterday with an old friend that I haven't talked to for a long time. She was eager to tell me about the other people she knew with cancer, and to hear all about my treatment and how I was feeling. Why is it that some people seem to want to scare us as much as support us? I guess they're working out their own fears, but if I hear one more story about someone who had clear lymph nodes but it had already jumped the lymph system and gone to the brain ... :-{ At least the people she was telling me about were still alive, LOL, so that's something.
My hair is supposed to arrive at Chemo Diva tomorrow, and I did a rush shipping order, so I'm hoping for myhalo wig within a week or so. I can't wait to have something to wear on my head other than a hat and a smile. I went to a birthday party last night and kept my hat on the whole time, feeling self conscious about my patchy li'l head and not wanting to take attention away from the birthday girl. Of course a halo wig will still just be a partial solution so I'll need a scarf or something anyway, but it will see me through once I've shaved my head bald!
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Kate- I have been hoarse too throughout. No congestion though. I would just keep drinking lots of fluids, frequent hand washing. You could try some Tylenol too? When I go out I do put a bit of Vaseline in my nose. I have read that this helps to prevent infections when flying. Stops the germs sooner. Don't know if that is true or not. I am sending you healing thoughts so you don't get sick and can keep whatever is brewing at bay.
I am under quarantine this week. I CAN'T catch anything. I leave next Tuesday for my Madonna concert trip and I don't want to end up catching anything in the meantime. I have avoided any trips to the ER thus far, hoping it stays that way.
I am sick of the "Cancer stories" as well. I have now started speaking up when the conversation turns to these stories. I can't hack other people's horror stories. That is their story, not mine. If I ask for advice please give it to me....I have had excellent support people who offer great tips for me and have helped me immensely.0 -
The freaky thing is the lymph node in my neck, but that happened even before I knew I had cancer. I'll try the Vaseline again--I did it for the second round but then fizzled out with it. I took Tylenol for the headache (checked my temp first, and it was fine), so I'll hope that this is nothing more than the typical weather-change business I get once a year. I looked back at what they gave me during chemo class, and they're only worried about fever and such, so I'm going with that. If it gets any worse, I'll call.
The stories. Sigh. As if any one of us wants to hear about, of all things, something like mets at this point. . . . I kid you not, a well-meaning person said to me, not long after diagnosis, that he was "glad they caught it early, since it can be cured," unlike his dear aunt who died of brain mets. I mean, REALLY, dude? If I knew then what I know now, I'd tell him to donate money to Metavivor, which is the ONLY charity that 1) researches BC metastasis, and 2) gives all of the money they raise to research. I think I might prepare a handout or something to give people.
DeeRatz, thanks for the healing thoughts! I'm sending happy quarantine vibes your way. You will stay healthy and strong for Madonna!
mom2aboy, it's definitely people working out their own fears. This whole thing has made me hyper-aware of fears of all kinds--my own, other people's, and a kind of collective sense of fear. . . . I guess that's actually a good thing, since I've realized that 1) worrying about getting cancer for all that time didn't stop me from getting it, so the time is better spent NOT worrying, and 2) people are scared and need to be educated. I'm an educator, so that works.
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Kate, every time I get a lump anywhere I worry, but I bet this is just the 'campus lurgy'. Keep taking your temperature and I wish you better!
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@KateB, you are not just an educator but a wise, wise person. Thank you for the perspective! I hope you're feel better soon and your lymph bump just melts away ... I used to get them in my neck too from congestion & found that saline irrigation helped. You can use a plain large-size syringe (the kind without the needle of course) or buy the NeilMed kit (or a neti pot, the original model for all such systems as I understand it). My naturopath recommended doing the same thing for my dry nasal membranes but I haven't tried it yet
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Kate - I got a swollen lymph node at the back of my head after treatments. It happened twice. Then, I was on an antibiotic for the foliculitis, and the third treatment the node did not swell after treatment. I had no temp or anything,so I guess it was an infection I couldn't quite fight off or irritation from the chemo.
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I am dreading my third round tomorrow. I am trying to give myself lots of compassion because I feel pretty fragile all the time. The steroids I took this am are adding to the tension. I am more hopeful this time that the constipation is under control and won't be my nemesis.
Gooseberry, I'm with you, my last round of the crappy stuff will be December 8 if I stay on schedule, I can't even think of a year of herceptin and then radiation. One thing at a time.
My hair finally left. I've got some fuzzy stuff like a baby bird, and still have eyebrows and all other hair, I imagine that will go by the end of treatment. Has anyone found any hats that don't scream cancer patient? All the chemo hats look just like that to me. I would just go bald but its getting cold.
I am SO grateful for all you women. Being able to read and share has been such a help for me. xo
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RavenSally, hang in there. My third round was the least offensive of the first three, if that helps at all. Regarding hats . . . I've found that plain old winter slouch beanies look pretty good and not especially cancery. I had a couple from last winter, and got a couple of lightweight ones on Etsy that I like. They're pretty much my go-to hats.
My hair keeps trying to grow back, but then a new cycle comes along and it gives me splinters and I shave it again. Add this to the list of things I never thought I'd have to consider.
For what it's worth, I've been suffering with constipation, too, and I found last round that taking Senokot at night for the first 3-4 days really, really helped. I've also, inspired by molliefish, been eating prunes every day. Also seems to help.
mom2aboy, I try. If I could take my own advice, that'd be a bonus! I sometimes have dark thoughts at night, right when I'm trying to go to sleep. . . And I want so, so badly to have all the confidence in the world that these treatments are going to work, but sometimes I have to default to the notion that not worrying just feels better than worrying. It's hard for me; I've always been super-Type-A about most things.
I just had my first public hot flash. I've been getting them at night (which pisses me off to no end), but I just had one in the classroom! I damn near took my hat off, but instead just suffered through. The good news is that they don't last long.
Second echocardiogram is Thursday, and I have an appointment with my primary care doc tomorrow to adjust my thyroid dose. It's one of those appointment weeks, I suppose.
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Kate-Public hot flashes are the worst. Hate them....I had a terrible on the day I was with my PS getting a fill in my expanders. It was so bad my jeans were even damp when I left. I wanted to rip my wig off and run down the hall in my bare foods just to feel the breeze and cool off. My PS was untracompassionate as she was in the same about last year at this time. Thank god for such an awesome medical team that I was blessed with. I really feel fortunate even though people scream about our terrible Canadian healthcare system.. I have been lucky.
My hair is like permanent 5 o'clock shadow. Reminds me of my grandpas whiskers. I shave it and it comes back..aka Velcro...no splinters. I still haven't lost the hair on my arms so I am hoping my eyelashes and brows decide to stay as well.
Raven- my third round has been very good as well. I am day 5. Had a bit of constipation, se emote took care of that. I started my antibiotics today, which last time wanted to give me diarrhea. I started taking a probiotic and upped my yogurt intake. That seems to stop the big D in its tracks. Keeps my normal flora healthy and keeps yeast at bay.
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I don't know what it is with people who feel they need to share their cancer sad stories. One day I am going to get up the nerve and tell them off. Well maybe not off but something like "I prefer to hear only of cancer success stories so please filter". Or whatever....get the hint people. I find it a bit insensitive. I mean if someone had lung cancer I wouldn't go around talking about how I had a friend who had it and died? Seriously? I don't get it.
Oh well.....I am sure it is all innocent and not meant to be harmful. I have a friend who keeps talking about her coloring her hair and how she can't get an apt. with her favorite hairdresser for another 2 weeks and her hair looks awful. I just want to tell her to stuff a sock in it.
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Suzanne- I was with a couple of my friends on Friday. My one friend was bitching about the color she got at her last hair appt, how she was going to get it fixed, I whipped my hat off my bald head and offered to trade her. We had a good laugh. I'm glad they still can be real around me. We have had many laughs and tears.0
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Yes to Metavivor donations!
I've had a tough time with the new regimen (Taxotere, Herceptin & Perjeta). I was in bed from Saturday morning until Monday afternoon. This is tougher for me than AC. YIKES!
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I ran into a former coworker today. I have such short hair now, I couldn't pretend - so I showed her my short hair and told her I'm going through chemo. Ironically it turned out another woman we both worked with is going through treatment now. It seems like the more people I tell, the lighter I feel and the more I find out I have in common with people I didn't even know were in the same boat.
Oh one thing - those of you who are eating prunes, if you're finding it challenging, I found a product called Plum Amazin's that are raisin-sized, cut up prunes. If I throw a few in oatmeal, that does it pretty well for me, along with a senokot every few days.
Re: hats, I've got a slouchy purple knit hat that a friend made for me and I'm wearing it a lot - i feel like itdoesn't scream cancer hat. There's a second one she made that's more like a bowl over my head, but it works too if I flip the brim back a bit. And a very soft, squishy baby-blue hat that I sleep in - it kind of reminds me of a giant baby hat. Pretty appropriate given the minimal hair on my head!
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Reading this amazing book, surprisingly upbeat. Has the entire history of chemotherapy!
http://www.amazon.co.uk/The-Emperor-All-Maladies-B...
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And it's a PBS documentary http://video.pbs.org/program/story-cancer-emperor-all-maladies/
It's so good! I watched it earlier this year at work.
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I'm about halfway through that documentary now! I told my mom I was watching it, and she said it was "morbid" that I'm watching it now, of all times. But my response is twofold: one, I have a morbid sense of humor. Two, I want to learn as much as I can about my disease!
I'm debating about posting something on Facebook about Metavivor. . . . I don't want to scare or upset people, but I also want their well-meaning philanthropy to send money to the right place. . . .
Just got back from primary care doc. I have a cold ("acute pharyngitis," but no strep) and folliculitis on the back of my head. She called in some kind of ointment for the latter. Except for this SPLITTING headache, I actually feel pretty good. . . .
JenPam, hang in there. Tax is nothing to mess with; think of it as a reason to take lots and lots of naps.
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Here's my Facebook post from today. I went ahead and did it, and wanted to share it with you ladies. I know that I cite a statistic that most of us don't want to think about right now, but I think it's important--who is more credible than a cancer patient when it comes to raising cancer awareness, you know?
Here goes:
"I've been debating about whether to post this or not. I don't want to be the cancery person in your news feed, and I don't want to preach. Call it awareness of audience. That awareness also means, however, that I gotta say this, because I know you're kind people who like to learn things:
It's breast cancer awareness month, as we all know. And lots of well-meaning folks donate money to Komen or purchase pink items in stores, maybe without knowing that that money (especially from the pink items) isn't being used to fund research that will stop breast cancer DEATHS.
Early stage breast cancer is treatable, this is true, and it's also true that the awareness raised by Komen et al. has worked to inspire many women to get their regular screening exams and, one hopes, to be treated promptly should they have early stage disease.
Here's the thing, the scary thing that we need to be more aware of (especially in Pinktober): about 30% of people diagnosed with and treated for early-stage disease end up progressing to stage IV, or metastatic disease, in spite of treatment.
That's right: 30% of women treated for early stage disease end up progressing anyway.
Stage IV breast cancer is a terminal illness, and that number doesn't reflect women who are diagnosed with it from the outset. There is no cure; there is only management and hope for the best.
30% is a bigger number than the rhetoric of "early detection saves lives" might suggest. I, for one, have a hard time getting my head around that number, given that I'm in treatment for early stage disease right now.
Think about how many millions--probably billions--of dollars that has gone to funding early-stage breast cancer research. That money has saved lives. Now, what if we could invest more in researching metastatic disease? Imagine how many lives could be saved, and how quality of life for those affected could improve!
There is an alternative to Komen et al., and Metavivor is an impressive charity. All of the money they raise goes to funding research grants, because they're staffed by volunteers. I, for one, will donate my money to them."
http://www.metavivor.org/about-us/
ACTIVISM SAVES LIVES.
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JenPam - So sorry this new regimen is more difficult. Hang in there!!!
Re-Pinktober - I feel mixed about it like many of you. I feel like the general populace is very well meaning and I find no resentment for them participating in activities that might not be the best for breast cancer improvements. But the companies that capitalize on this horrific disease and the sexualization of it is horrible. I'm all for anything that helps change the dialog to where it needs to be and helps focus on the right charities, but I certainly don't want to make good hearted people shy away from donating/helping. It is a difficult place for those of us battling this disease to find the right way to promote change. Two of our very own August sisters are dealing with mets, along with so many others. I'm eager to hear any way that we can put the attention where it should be.
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Tam-iam, see my post above. I'm not sure whether it'll have any impact at all, but I feel better having written it.
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Kate - That is perfect!!! I've debated about whether to "go public" with my experience. I haven't kept it a secret, but I also haven't announced it. You've inspired me.
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Hey there August people, I have been keeping up here as well as July as I started my chemo at the end of July. I just want to chime in with how I handled the "announcement" of my diagnosis in case it helps anyone. I have a pretty select group of Facebook friends, not just everyone I have ever met or friends of friends but, despite that, I decided that there were plenty of my Facebook friends who were more acquaintances from way back when or old Army buddies that I wasn't really that close to etc. that I chose not to share with at this point. So, I set up a secret Facebook group with just the people I want to update. I have added a few people over the months as it has seemed appropriate but this solution has worked well for me, and it has kept my regular Facebook feed from becoming the "crazy people's cancer channel" so I can compartmentalize a little. I find that I need non-cancer time sometimes and stupid cat videos not embedded in cancer can be nice. Hope you are all doing well, I just had my last carbo-taxol yesterday, looking forward to a carbo-flu week but glad to be done with that one. Next is AC, worried about that!
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Hello ladies - Last day for chemo today!! The penguin caps are so cold and uncomfortable but they did save my hair even though it has thinned. Just hoping to hang onto it for one more month.
I baked ribbon shaped sugar cookies and iced them with pink icing for the staff. They enjoyed the goodies.
My tummy is off but that is to be expected. I am juggling the steroids. Did two yesterday, one today, two tomorrow and one and one. See if that helps with sleep vs. side effects. Last night I did get some sleep despite the two steroids so that was good.
I am so ready to be done with this chapter in my life. Where's the magic wand? I would like to wish it all away.
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