August 2015 Chemo Group
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Hey All!
I just got the urge to check in--it's been too long, and I've missed you. Rachel, I'm sorry to hear about the brain mets but am glad the gamma knife went well and that you got to Mexico. Musosgirl, I hope things turn out OK with the whatever-it-is-in-your-back.
I've been mostly good. I've had a few scares, which are mostly me overthinking things, and two clear ultrasounds. My oncologist is happy with how I'm doing, although tamoxifen/Zoladex is still no picnic, and I'm doing my best to keep dark thoughts from entering my conscious mind. One major triumph was getting my insurance company to approve the three-month Zoladex shot for me, which means . . . I don't have to go to Cancerplace every month anymore! I was starting to find the once-monthly visits just too much; each visit would trigger a bad mood that lasted for a week or more. Not anymore.
On the 26th, I'll be officially two years post-chemo, and two years and four months NED. I'm trying to trust my body again and mostly succeeding (I hit 195 on my deadlift last week, and I'm squatting my body weight for reps!). I've gained some menopause weight, but f*** it. Life is short, and I'm going to eat food and drink beer.
Lots of love to all of you. I'll try to check in again soon. Big, big hugs.
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I can't begin to tell you how please I am to see you and hear that all is well big big hug right back
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Feeling restless today. Prayers, please....
If you remember, I mentioned I have many Oncology people in my choir, including a couple. This morning, we learnt that the husband was just diagnosed with early stage lung cancer, and will be having surgery in couple weeks. (his dad also diagnosed last year).
I didn't know what they do (only know they are scientists), until the wife asked "which chemo regiment" I was on, & "make sure you do 10 years Tamoxifen if you could". Then I goggled their names His name popped up as one of those who did early research on BRCA.
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Dropping in for the first time in many months. Rachel I'm so so sorry to hear about he brain mets. Your photographs with the family are heartening - I can see you are surrounded by love and your kids are growing into beautiful 'tweenies'. I wish you many more quality weeks/months/years with them. You will be in my prayers.
Musogirl hope the lump is the same as my scare-lump (nothing much). Nice doodles Superius :-).
Merry Christmas / Chanukah all!
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Merry Christmas to you as well Ms Brompton. Glad to see you here. Happy you have been carrying on.. Love to all.0
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Merry Christmas to all... I am getting my mind ready for the long weekend.We're catholic, so we have the Sunday obligation (4th Sunday of Advent) AND Christmas obligation all cramp into one weekend. The regular 3 Masses on Sat/Sunday morning), PLUS 4 Masses for Christmas eve, then 2 Christmas morning. I have 5 Masses to sing and 1 to direct, @_@ and WorryWart has 5 plus a Wedding - getting substitute for 2. but he has a wedding to play Sat pm also. WHO schedule a wedding on such crazy weekend?! I joked with my choir that I will be bringing a sleeping bag & sleeping under the piano...
p.s. Yes, that's the WorryWart in the doodles.
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Hi Ladies,
It hard to believe that 2 years has passed since we were in the midst of active treatment. It almost seems surreal to me that we actually went through everything we did. I am thankful to be on this side of treatment. Although Cancer is never far from my thoughts.Sh
Rachel, I am sorry to hear about your brain mets. I was involved with starting a BC support group last January. 2 of the facilitators are metastatic. Nathalie has been 9 year with NED, Kristen is 1 year NED. Kristen had brain mets a year ago, had surgery and whole brain radiation. They are both doing great. I am hoping the same for you.
I have been quite active in the BC community here, building resources for women and setting up supports. I have met many beautiful women and it has added some sort of crazy meaning to my whole BC hijacking. I along with 3 others organized a BRA(Breast Reconstruction Awareness) day in October. We had 4 Plastic Surgeons and 1 Breast surgeon give presentations to the ladies. It was concluded with a show and tell lounge where we had 15 ladies display their reconstruction. We were hoping to have 100 women attend. We had 160 and it was standing room only. It made my heart happy to see all the women there getting the correct information regarding reconstruction or no reconstruction. The feedback was very positive. It will be an annual event!
I was also involved in a book that was made. It was for a project called Surviv(her). It is a book that is made up young women who have gone through cancer. It contains photos and a short stories, sort of like Humans of New York if you are familiar with that. I actually did a topless photo shoot, as I had tattooing done over my scars. I love my finished result and am proud to be part of this project. All money raised is going to cancer research. When I had my tattoing done I was quite emotional. I feel by doing this I have taken my power back. Having scars that I chose has definitely helped in my healing.
I wish all of you ladies a beautiful holiday season with friends and family. That the season fills your heart with love and happiness. I think of you all often.
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You are beautiful, Dee.
Merry Christmas, everyone!
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OMGosh!!! Totally forgot to update y'all. Annual mammo on Monday. Saw some of the pics. They don't look any different that last time. One year 5 days earlier. I'm sure all is status quo. And if not well, what will be will be. Life is a precious gift and I plan on taking advantage of every minute.
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Been thinking
about you gals lately. Lots of going on since Dec.The Cold War had thawed,
but it sort of put some boundary in place, no more PG13 stuff. Starting fresh.Apparently it had affected the
WorryWart as well… a year after, when it’s time for the choir project,
he actually said, “don’t second guess yourself” (that’s how the Cold War
started). We have been doing more talking & sharing, so that’s good
improvement. I even told him plainly that I didn’t understand why he was so
worry about everything during chemo, that he was reacting too strongly as church
friend.I also told him why I am distancing myself from this person in the
choir and why -- when I told her about the Cold War, she said I should “go on
those dating websites, be friends with guys, to make him jealous, he needs a
wake-up call” To think of her nickname was “the Match-Maker” & used to say
things like “oh you two would make music genius baby…” More than a year later, I am still shocked that she would suggested
game-playing. I told him that, No I don’t understand why you were so upset, but
I am not playing games. And whatever life brings, No games.”Other happening: We
lost a friend in the choir. He had been sick since Nov and finally they diagnosed
him with mets. This friend quietly took
me aside the day before Chemo, said: “I had been there before, it's going to
be tough, it's going to feel like dying, it's going to get worse before it gets
better; but you will get through it. God will be there with you along the way.
Remember that.” Before that day, I didn’t know this
friend had cancer. Such simple words of faith. We had the funeral last week,
this friend loved life, and choir wore Leis at the reception.Then next day, we have a baby shower
for TWO ladies in the choir. One dues in June, another in July. There will be 3
babies in choir! Cycle of life, I supposed.Had Mammogram 2
weeks ago, the Tech this year said, “We’ll see you next year if everything’s
good, otherwise they will call you if they need to see you sooner.” (Last year
they just said, “see you next year!”) Finally got the letter today, No call. Yeah! Check In with surgeon in June.How's everyone doing?
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no news is good news???? 2 weeks post mammo and no phone call. :-).
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I have had my mammogram--all clear. Still have an MRI in October--do we get MRI's all five years? My Onc decided I could wait a year before seeing him again, so that is nice and reassuring!
Glad you ladies have also had clear results. Would like to hear from more of us. I think of you all so often--our little sisterhood. It would truly be awesome for us to all get together at the five year mark
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Muso! Yay for you!! Still no phone call, and last year I didn't get a phone call either. No MRI here, they don't do them routinely. Unless someone can convince me otherwise, I'll likely stop tamoxifen at the 5 year mark. We'll see.
I think of all the ladies on here often too, wondering how all are faring and hoping everyone is enjoying each and every day.
take good care all
NIkki
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No MRI. They sent letter for mammogram result (yearly). Had yearly physical check with surgeon couple weeks ago. all clear. Since they said I have dense tissue, I asked the surgeon, if someone lost weight, less fatty tissue, would that make it even more dense. He said No. that's a relief.
The other day someone at church asked how I'm doing (I didn't know she knows). And she shared that she had surgery & radiations 2 yrs ago. She declined chemo, one of the reasons - her sister "didn't survive it". So in her mind, she was like, I'm already 75, whatever. Yikes! I need to be careful NOT to let that information slip!
Where should we go for 5 years?
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hey, happy chemo anniversary, if it isn't too terrible to remember. I had my first chemo on my youngest brothers birthday. August 14 2015. Here we are 3 years later (plus a couple of days) and I'm considering donating blood. I was reading about it and I should be good to go three years out. How is everyone doing? I wonder about you all, I still visit here every day though I don't always contribute. Take good care. Love and best wishes, Mollie
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We haven't seen much of this crew around here and that is a very good thing. I had my semi annual check up today, all is well. I return for a mammogram in May2019 and an oncologist appt as well,
. Today is my female dogs' 2nd birthday, my male dogs' 6 month birthday, and 3.5 years since my initial diagnosis (minus a few days)
Time marches on and I continue to progress my career. I still worry every day, but a little less I must tell you. This disease is a bastard.
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MO appointment tomorrow. And Thursday is 3rd year anniversary of Chemo graduation.
I was selected as Parish Guild president this Aug. Basically there's a nomination committee, then names in bulletin for few weeks, then election at meeting "anyone objects?" ... yeah... Almost like playing Tag.
And I got a few people asked, "do you know what you got yourself into?" "No" "Better that you don't" Oh boy!0 -
It's been a long hard road ladies, and here we are... I'm three years and 1 day after my last active treatment. I am blessed to be here, watching It's a Wonderful Life with the family and knowing, it truly is. I miss you all and wish you all a very merry Christmas, Happy New Year, courage, peace and love...
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I was thinking about you ladies today and wanted to check in. It is so quiet here though. Rachel...are you out there? I think of you the most—our kids are similar ages.
I am okay. Still all clear. Still hating the side effects from Arimidex. Hot flashes suck. Had a breast MRI and almost had a panic attack while in the machine—that was a first. Found out my surgeon likes to do them yearly from here on out. That is not gonna fly. Too painful, too stressful, too expensive! I am out around $2,000 for this last one. My kids need college funds!
I am fighting horrific back pain still, but learning about lower back pain and finding coping mechanisms. No one has a clue what is going on though. It is more of an emotional and mental drain now—fighting more and more depression.
Where SHOULD we go for our 5 year party? Kate, how'd it go with your book? Superius, any new revelations with Worry Wart? MsBrompton, ride any amazing trails? Mollie, it is always comforting to see you still checking in regularly
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Hi Musosgirl, No new revelations from the WorryWart.
He's been dealing with things at work this past year. they cut down his work load at church by 1/3 (He used to have 3 services per weekend), because of personal disagreement between him & the music director of that service.... tried to talk to them, the high-ups have refused to talk, always too busy, not good time, "we'll miss you if you go"....
Anyway his lost big % of his income. That's just crazy. There's no suitable opening out there, no church is hiring top-rate musician... He used to say church was his second family, now it's just getting bills paid...
Anyone in San Diego wants to learn piano? p.s. that "music director" (she's not trained musician) is totally game playing B*&^%$... I helped out in her group for a few months prior, & 2 wks before they told WorryWart he's "not needed next week", this B*&^%$ asked me, "will you still with this group if V (worrywart) not gonna be here." When I didn't answer, she pressed, "Did you not hear what I say? I said......" (Wow!) Now I pretend she's invisible, even she's less than 2 feet right in front of me. Just you know, the last day WorryWart played for that service, was also my last day with that group.
Oh & then he told me some people are stalking my facebook, when I posted anything about 'viktoria' or doodling or vent about church stuff, those comments "ricocheted" to him. -_-
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Hi Musogirl,
I’m here. Actually getting an infusion right now. I progressed on herceptin and perjeta and moved on to Kadcyla. It’s been pretty rough, but today is treatment #7 and I think we are getting to the bottom of managing side effects.
Thanks for asking.
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Rachel,
So nice to see you on here. I have wondered how you are doing. I check in here once in awhile but have not posted for a long time. Sorry to hear that you have progressed but let’s hope that Kadcyla keeps the beast at bay.
I’m doing pretty good.. I am dealing with a repetitive strain injury in my back and neck. It is due to my reconstruction and scar tissue. I have been going to physio since November and it is getting a little disheartening. Physio has cut my work hours back to 5 hour days. This seems to be helping, but any progress is slow going. My physio said that I am still dealing with post chemo tissue changes and I just don’t recover from treatments and exercise like I used to. So I will just keep at it and hope I find a way to function without continued injuries.
As for old man winter, he can take a hike already. It has been a brutally cold February. -45C with the windchill some days. It is the one time I am thankful for my hot flashes. If I am cold, I just wait for the power surge and I’m good. The silver lining!
Take care all you beautiful women. I think of you all often and how we travelled the same road together.
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sending love your way Rachel.
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Hello my friends,
It’s been quite a while since I’ve checked in, which I didn’t realize! I see we were talking about where to meet up for our five-year! I love that idea. As long as it’s warm, I’m happy. (San Diego?)
Rachel — How are you?
Musosgirl —Is your back any better?
Superius — What’s up the WorryWort?
Dee — Wow, well, what to say about how you’ve turned this episode in your life into a blessing for your whole community. You give me courage that maybe I could make a difference in mine.
As for me, I think I popped in back in August 2017 to share that I was getting a breast reduction, the first step towards a DMX and reconstruction that was supposed to be he next step in my treatment/prevention plan.
That was supposed to be followed in a few months time with the actual DMX — but the reduction was super slow to heal, and then the breast surgeon quit doing surgery to go into teaching full-time. Since the PS had suggested I get in better shape before the DMX, I decided to focus on that. I’ve done well at it, now at a nearly normal weight for the first time in several years and feeling great
Then I had a mammogram, much-delayed, in fact 18 months after my reduction surgery. There was a tiny spot — right about where my cancer was —which I didn’t know about until after my family and I had booked tickets for a 10-day vacation in Europe. Oops. Lesson: Don’t book any travel until after you get your mammogram results!
Just before we left, I had an MRI and ultrasound of the spot done, and my BC doc is pretty convinced that it’s nothing but fat necrosis from the reduction — yay! But he still wants me to do a needle biopsy just to be sure. I’m leery of stirring it up in case it turns out to be cancer, so I’m going to talk to my PS first and see if he also thinks it looks like fat necrosis. If he does, I’ll go ahead with the needle biopsy
To be honest, there has been a ton of upheaval in other aspects of my life, some of which I might not have shared here. (My parents have dementia and are now living apart because my dad needed more of a “memory care” environment ... long story, but that’s the bare outlines.) So I was just getting the mammogram out of the way. Figures doesn’t it?!?
I’ll try to be better about keeping in touch. Happy spring to you all!
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Just checking in. Scans today to make sure my new treatment (Kadcyla) is still working after 6 months; it was at 3....I don't really get too nervous, but would ideally get as long out of this protocol as I did herceptin/perjeta.
The mental part of metastatic disease is the hardest, and certainly one I hope you all never have to experience. It's a lot of living in limbo, not sure if you should plan for or expect a future. I can't believe I started having the symptoms (spinal compression fractures) that led to my diagnosis this month 4 years ago. My son was 8 and yesterday he turned 12. My daughter was ending fourth grade and next month she will graduate from middle school. It is truly a medical miracle of research that my disease so far has been contained to my bones with one little brain blip.
So after four years, it seems that I may actually be a bit of an outlier and LIVE for awhile! My life over the past four years has been positive and full, but self-limited. I stopped dreaming or planning more than a few months at a time. I do feel fatigued from four years of treatment, but I let that fatigue take from my joy of life. Nomore.
Last week we were in Spain, a trip I barely allowed myself to dare dream of. But there we were, eating and drinking and fishing and putting feet in the Mediterranean and renting a villa and speaking Spanish and eating in cafes alone and watching my kids experience Europe for the first time and renewing my vows and driving down windy mountains. And suddenly nothing seemed impossible anymore. Nothing seemed out of reach because of cancer. Harder, yes, but not forbidden.
I wish you all that feeling of life as we approach our four year marks. I wish you all unlimited, joyous, passionate hopes, dreams, and actions.
Rachel
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Loved looking at your pictures Bluefrog and thanks for sharing your inspiring story!
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You and I were in Spain at almost the same time! We were in Barcelona— were you?
Rachel, I’m so glad that you wrote this, and that you felt free to enjoy all that Spain has to offer, and renew your vows to boot!
It’s a beautiful testament to your fighting spirit and resilience (and yes, to modern medicine). Please keep us posted.
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Just a quick update, the MRI of my breast was inconclusive, the in-office targeting ultrasound was inconclusive, the breast imaging center’s special diagnostic ultrasound was inconclusive, and then finally my breast doctor did s second targeting ultrasound and flat-out said “I really don’t think this is cancer.” Next week I see my plastic surgeon and he’ll decide what he thinks ... in any case I believe I’m destined for my DMX at last this summer. Late summer and into fall perhaps
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Rachel beautiful pics, we went in 2014 and had a blast. It's a beautiful country. Glad to see you and Mom2aboy here. All is well with me. Love to all. Nikk
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oh! I love updates! So good to hear from you all. My back is much better, thank you. My sleeping, or lack of, had been a major issue starting around January. By the end of April I thought I was losing my mind! I had been up for more than 50 hours straight when I decided to stop all my medications. The next week I slept so well. Then some discontinuation syndrome kicked up and I started my Paxil again. I had my yearly oncology appointment coming up so I laid off the AI until talking to the ONC, he said I did the right thing. He put me back on Tamoxifen—Aromasin had caused horrific joint pain and the Arimidex wouldn’t let me sleep, and he said the latest research says Paxil doesn’t interfere with Tamoxifen like they thought. I think he is just trying to keep me on *something till at least the five year mark. But my mammogram is clear and my blood work is great.
I am preparing to start homeschooling high school. Very daunting planning out a transcript and praying we are leading this child on the right path for him. We are working toward community college because the boys can go for free for those two years, so requirements aren’t bothersome—more just knowing what courses will benefit this kid in his long term plans. It all counts now! Younger brother is starting middle school—I am thrilled he found a book series this summer that makes him stay up all night reading! There is nothing better than watching kids discover the joy of reading! My eldest did that years ago and I was starting to think little guy would just never read for fun.
Overall I am okay. No energy, even though I am walking regularly now. No real interests right now either—but I don’t feel like am in a depression. I would like to find something worth while for me—something that inspires me to get out of bed everyday—instead of dragging myself out whenever I have to take the boys somewhere. Anyone else struggling with that?
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