Starting chemo February 2020
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I got my port out last week. I am so excited and nervous…that port was my lifeline and I feel like I am waiting for the other shoe to drop and cancer to return (not a healthy outlook but it’s hard to not think about it!). My surgeon was wonderful as usual. I was awake for the procedure, which was weird and kind of fascinating. My hair is long enough to wear down and in a clip while looking semi normal. I’m enjoying these last few weeks of summer before the school year starts and I’m back to teaching full time. How is everyone doing? Hope you are all well.
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ajminn - thats sooo exciting. Port out! And I’m glad to hear it wasn’t too bad with an in office experience. That will be me someday.
And yay for hair in a clip. It feels so much better not to have to go out self conscious every day. No clips for me yet, I’m pretty sure the Kadcyla really messed with my growth, the front is going so slow. Just the bangs area, it’s still not in my eyes, and I’ve never gotten that part trimmed. I think it’s picking up the pace now, and it looks cute with headband, but it’s still slower than I’d like. I’m a light brown, but always got highlights, so I think I’m finally getting them again in the next week or two, hopefully that makes me feel more normal. People still do not recognize me everywhere I go.
I had my implant exchange surgery three weeks ago. It was fairly easy and not much pain. He did lipo a little fat to graft, and the lipo sights were tender for 4 days, but nothing serious. Everything is looking and healing good. One breast got a little pink, and I had to do an antibiotic for a week, but if it was getting infected, that worked. My cancer side is staying a little swollen and stiff, so I’m back to the beginning with stretching and all that good stuff. It’s definitely the lack of lymph nodes messing things up.
I finally went to Indianapolis to get screened for the vaccine trial. I had to cancel my appt when my dad died, and this was the first say we could get. I’m still not randomized because I’m due an echo, and I had to wait an extra two weeks to let my surgery heal. So, next week echo, send the results, and they will randomize me. I’m glad I’m doing it, but it is a mental drain to have to drive 3.5 hours, so more tests, shots, appts and then drove 3.5 back. Plus keep my port. I’m just trying to keep my eye on the prize. And it’s worth it to me for the chance to get an vaccine that may actually help. And to help for the future.
When does school start for everyone? My high schooler has been back since Aug 12, but my other three start on Monday, the 23rd. I’m looking forward to some semblance of routine and regular life. But this weekend we closed on the little cabin in MI. Between cancer, Covid and losing my dad, this feels like a great decision. We have wanted a “lake house” forever, but by the time we would be able to get one, my kids would be grown. This little place is so much fun, even if the sleeping quarters are tiny. But we will use it and enjoy it now, and not wait for “someday”.
Oh, and I’m stressed about Covid again. Got my third shot this week, no major side effects. I wish my 9 year olds could get vaccinated.
Mmorigan - when is Africa?!?
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Africa is whenever COVID buggers off 😂. Currently looking at September 2022 but, who knows what will happen next year.
That's a long drive, hopefully you get the wokvac so it's every 3 weeks instead of weekly.
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Fab4mom- bummer to hear about the trouble after your surgery. Hopefully it’s smooth sailing now. I’m very fascinated by the vaccine trial. I’d totally participate in research or a trial if given the option. I LOVE your cabin! What a wonderful place to make memories as a family. I head back for teacher workshop week next Monday 8/30 and kids start back on 9/8. Curious to see how the school year goes with the delta variant surge. I’ll have a 2nd grader and a kindergartener!
Morrigan- covid really has put a damper on so much!
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I had a port put in and really no pain. It is sore, but no real issues. Great surgeon and one week later just some bruising left and all healed. Weird feeling the port through the skin.
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Hello everyone! How are people doing? It’s been a while. I hope everyone has been living an uneventful, yet exciting life. I am almost at the 2 year mark since diagnosis. While I could stand to lose some lbs, I really can’t complain. I’m feeling good overall and my hair finally looks semi normal. I’m almost 2 months into the school year and while we have to wear masks, my school has fortunately had few covid cases. I have a 2nd grader and a Kindergartener now and they are loving school so far. My (almost) 3 year old is an adorable little terror and a complete toddler of the pandemic. We have a couples trip to Ireland with some friends planned for next summer and I am very much looking forward to it. It’ll be my first trip across the pond. How is everyone doing? Any fun updates? (Not fun updates also welcome). I hope everyone is well.
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so far so good. Work is kicking ass but, it's nice to have normal worries instead of cancer and COVID.
I gained back the 20lb I lost from Chemo and added 10 more on top of it. I have managed to lose the 10lbs so I'm back to my normal pre-cancer weight which is a good weight although not my preferred weight.
I'm a stress/boredom eater so i do intermittent fasting to help lose weight (been doing it for a few years now) However, I'm so busy with work now that I've pushed it to 3x21...I basically eat between 6:30-9:30 at night.
I hope everyone else is doing well
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mmorigan and ajminn - I’m happy to hear you are both doing well. My weight is up from ore cancer, and it seems pretty set on staying put. About 10lbs total, so not horrible, but I wish it would go. I do try to do a modified intermittent fasting, I could never do only eating in the three hour window.
I still have the clinical trial going, and occasionally going to OT, for capsular contraction on my implant. The cancer side is harder, so I’m working on massaging and keeping it loose. My OT says mines actually pretty good for post radiation, but who knows.
My hair is much more normal, although the front is still lagging behind the rest of it. I have had it trimmed twice so far, just to help it even out.
My kids schedule has been crazy. After the calm of Covid lockdowns, now it’s just insane. Practices, social stuff etc. I miss the quiet. But everyone is happy and busy, so I can’t complain.
We’re going to Mexico next month, over thanksgiving. I can’t wait. It seems like a good time with Covid, I can’t wait around forever. It’s my post cancer, post covid, family celebration.
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@Fab4 - what arm are you in? I just got my first Booster and scheduled my 2nd for December, they let me pull it in by a month so I can start Nerlynx before my 1 year is up. My MO doesn't think i need it but, I want to at least try it.
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About a week ago I started getting pain in my back, automatically I jumped to bone mets but, I waited because I wasn't sure. I concentrated on when the pain came in and where I felt it. Generally it was iny left shoulder area and my left lower back. I kept saying it felt like I had a bad skin burn, my skin was sore and felt like it was burning and really tight.
I even kept checking my back for rashes to see if o was having an allergic reaction. Last night I turn over and my back is in pain. I feel my side and there's bumps. So of course I panic run to the bathroom and I have bumps/rashes over my left side where the pain was. Oh no Skin Mets!?
After a few minutes I calm down and start thinking rationally. Bed Bugs? Fleas? Nope all clean. Spider bites? Well yeah but he'd have gotten me in 3 spots.
Dr Google helped (for once), spoke to the doctor today and it's Shingles! Joy. I'm too young for the vaccine but, I guess I may immune system is so screwed up I developed Shingles. 😮
Happy Friday People!
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Oh wow - and oh no! I hear shingles hurts really bad. I hope they can treat it quick. Crazy stuff. I would never even think about getting shingles.
I also have gained back the 15lbs I lost during chemo, and I cannot motivate myself to try to lose it again. One week I was REALLY good. I exercised a ton and counted calories.... and I gained two pounds. I was so pissed and I haven't tried again since. I exercise almost daily - I feel like the pounds would pile on a lot faster if I didn't. All the good side effects of chemo (weight loss, smooth skin, not having to shave, no period) are all gone now.
And I'm not doing so well with "eating healthier" and "limiting drinks". So, you know.... back to normal I guess.All else fine here. Coming up on 1 year implant anniversary. Haven't had any medication since February. My skin/armpit area where nodes were taken is still sensitive/sore. Hair is just crazy. Maybe 3" of sticking-up straight. I'm tired of wearing headbands and I can now get two small pigtails on either side of my head. It mortifies my youngest son, and so I wear it that way often.
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Oh, has anyone had their port removed? Can you tell me what that was like? I still have mine because 1) I don't want to go to the hospital (had enough) 2) I'm scared they're just going to sit me down, give me some topical cream to numb it (barely), cut me, and rip it out real fast like a bandaid and I'm going to feel the tube-thing as it comes out 3) I'm not sure if I need to have someone drive me home????
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i removed my port during exchange surgery. I've heard getting it removed in the office isn't bad but I don't know.
Yeah Shingles sucks. No fun 😂
Just looked having BC puts you around a 30% higher risk of getting Shingles 😒
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Morrigan- oh no! I got shingles on my left upper back area when I was a teenager (so random) and I have a coworker that got them in her ladyparts when she was pregnant with her last kid (super random and painful!). It's certainly painful. Hopefully you get some relief soon.
Fab4mom- I hear you on the kids activities. It's madness! I'm happy to hear you're taking a vacation. It's well deserved and Mexico is beautiful.
MicD- I'm in the same boat with weight gain. I try hard for a while and get no results…I should stick with it but I'm just exhausted by the end of the day (and early in the mornings) and can't bring myself to put in a good workout .
As far as port removal I got mine taken out in august by my surgeon. I was awake the whole time. They just numbed the area and completed the procedure in about 15 mins (it was technically in an outpatient operating room and there was a sheet up blocking my face/chest area so I couldn't see). I found it relatively quick and easy. I just drove myself and was able to walk out afterwards. The team even gave me a mini bottle of sparkling juice to celebrate!
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Hi everyone, hope you all are doing well. Wishing you all a wonderful holiday season. I know this is the time of year many of us were initially diagnosed, which always makes for some not fun memories.
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i hope all are doing well. I went last week for my 2nd booster shot for BC Vaccine, my Platlets are finally back in the normal range and my ANC was 2.2 (it hasn't been at/over 2 since I started treatment) 😁
My Christmas Eve plans got canceled because my cousins got COVID (again). I hope they turn out OK, my cousin is 65 and when he had it in March/April it did a number on him.
I actually ran to the market this morning and bought a bunch of food so I can cook a small Christmas dinner if my Christmas Day plans get canceled as well.
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Happy Holidays to all!
ajminn - yes, lots of triggers this time of year back to diagnosis. I had found my lump but was waiting to get in for a diagnostic mammogram, so I go back to that dreadful feeling I had, even though my primary told me she thought i was fine.
mmorrigan - so good that your numbers are finally back to normal. Kadcyla was a lot more potent than my onc made it seem like. I definitely could function on it, but I'm so glad it's getting out of my system. I hope your Christmas turned out ok
We had a nice Christmas, except a stomach bug ripped through our house. I did not miss those when we were quarantined. My 9 year old brought it into the house. Kids are still masked at school, but they aren't very strict about anything anymore.
I'm still doing the clinical trial too. One more vaccine to go and then I get a break until boosters.
Last visit to the onc showed that I'm moving out of menopause. She wants me to switch from tamoxifen to an AI, which means i'll start on the three month shot to shut down my ovaries. She waited to make the switch until I finished the active part of my vaccine trial. So, I go in January and I'm expecting to have those changes come. I'm pretty nervous about the AI, I'm already really achey in my hips and knees, especially for 45. I stretch and take it easy, but it's still a challenge. If I manage ok on the AI and shots, I'll probably schedule surgery to get my ovaries out later this year. Also hoping to get my port out soon. I'm pretty over all of it, I'm ready to not feel like a patient anymore.
My hair is much better now, no one looks at me like a cancer patient. But, I have had the slowest growth on top/front. I have had the back trimmed three times, but my bangs only make it just past my nose. Which is ridiculously slow for 18 months and no trims . So I still have to do a barrette or headband or I have really dorky looking hair. It's growing and nice and thick, just about the slowest growth ever.
I hope you all have a happy new year and a calm and healthy 2022!
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I hope everyone is doing well! Life has been busy (in a good way). My hair looks mostly normal now and fits into a ponytail finally. My weight isn’t budging much, but I can’t say I’ve been putting a lot of effort into regular exercise. After a day of teaching and running kids to sports and activities, I find myself just wanting to sit on my butt in peace and quiet or just go to bed. I can’t complain, this is the “normalcy” I was desperate for 2 years ago in the middle of chemo. I now see my oncologist every 6 months (was every 3). My husband and I are headed to Ireland this July for 10 days to celebrate our 10 year anniversary and to treat ourselves to a vacation after the last 2 years of madness. How is everyone else doing?
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Hi Ajminn - What a wonderful update, it sounds like all is going well, and you don't have much cancer stuff left to deal with. And how amazing does 10 days in Ireland with the hubby sound? A well deserved break.
I'm doing well, feeling pretty much back to normal and alot less cancer appts and stuff. Since I did the clinical trial, I still have three more visits to do boosters. I started zoladex back in January and i'm switching to an AI finally this week, I'll see my doctor when I go in for my shot. I'm a little nervous, I already have quite a bit of hot flashes on tamoxifen, plus the weight gain and some joint pain. I've heard AI's are often worse, but I'm just going to go in with a positive attitude.
If all goes well, I'll likely get my ovaries or a full hysterectomy before the end of the year, so I can quit with the zoladex shots.
It's hard to believe that I still have stuff going on, but it's so much less intrusive than before. My hair is pretty cute, although the top and front are still growing really really slow. i think it's the tamoxifen. I still can't pull it back into a normal ponytail, but it just looks like I have long layers most of the time. The front is still not to my chin. But it grew in with my old texture and seems thick, so I guess I can't complain.
I hear you about the weight. I do exercise alot, and even tried weight watchers for awhile. I was really strict and lost about 4-5lbs over two months. Fell off for a few weeks, not awful, but not great, and the weight is creeping back. It's really frustrating, because I would like to be down 15, but it seems that is going to be really hard.
I hope everyone else is doing well. I can't believe we are all 2 plus years out from our start of chemo. What a crazy time, cancer, covid and all of it, but here we are on the other side!
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Checking back in on this thread on the 4 year anniversary of my diagnosis (Valentine's Day). Hope everyone is doing well and moving on! I'm well. Going for bloodwork every 6 months but no medication. I might ask for a scan as I approach the 5-year mark, just to ease my mind, but really I don't worry much so I probably won't. Don't love my implants, particularly in bed at night, but it's not so bad. Weight still a struggle after quickly gaining back (and more) what was lost during chemo. Despite restricting calories and lots of exercise (over 6 hours a week lately) it takes weeks to lose 1/2 lb. I wonder if my body remembers the quick weight loss during chemo and activates protective measures. I will lose 2 lbs fairly quickly whenever starting a diet but then it's like my body says, "I see what you're trying to do. I'm on to you…. nope" and pulls the emergency break. Or it's just menopause. :) But I turn 50 this year so making a final, valiant effort to get in shape. I always felt bad about the # of drinks I had a week (about one a night) and the effect that might have on recurrance. So I've found an NA beer that I like (Athletic IPA) and I think I've only had 2 alcoholic drinks this year.
Apart from myself, it feels like cancer to my right and left now. My father with prostate, another of my sister-in-laws with breast, cousin with brain tumor. So there is no forgetting.
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I forgot that I started Chemo 4 years ago on 2/5. I was more focused on my 4 year anniversary of my surgery (6/19).
I'm pretty much in the same boat, struggling to lose weight, only seems to work if I drop down to 1000 calories/day and exercise on top of that. Otherwise it's a struggle to lose weight at a normal diet/exercise.
I just switched from Tamoxifen to Anestrazole in October, thankfully the AI is treating me well but, I have to go for a bone density scan since this drug can cause osteoporosis.
I still see my doc every 6 months but, other than that I'm just living in the moment
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