Starting chemo February 2020
Comments
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Fab4mom & micd- there’s def something going around..my son had a low fever/runny nose/sore throat. We kept him home and did covid tests and both the rapid and 24 hour came back negative. There’s been other daycare kids with similar. All tested negative for covid. Just a virus going around I guess.
I got my tattoos. I did 2, which apparently isn’t common for a first timer, but honestly I’m so unbothered by needles and pain it’s apparently borderline disturbing to some...I did a walleye for my dad who passed years ago. Fishing was our thing and a walleye is the MN state fish. Then I did my son’s names in their handwriting on my forearm. I’ll add my youngest’s when he’s a bit older (Shane- 2 1/2). Honestly I feel like I’ll end up with a sleeve in no time...and I was never a tattoo person before!
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wow. I don't know how you did the foot so easily. I've always heard the top of the foot was very painful.
I have one wrapped around my ankle and when they got to the heal it wasn't fun.
I love them both, beautiful work on the fish.
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ajminn3 - very cool.
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Wow love the brows and the tatts! It's good to see life goes on!\
I was feeling great for about a week because my 6 month mammo was clear and I am getting a break from Anastrozole to try another hormone blocker. It was just really rough on my stomach. Not to mention joints and muscles! But I also had some swelling in my left arm (opposite of the cancer side) and thought it was from over use of my left side but out of the blue the primary care doctor says it is swollen lymp nodes in my arm(didn't know there were any there!) and now I am going to be scheduled for biopsies of the swollen nodes. I really don't know what to think. I've googled like crazy and don't really come up with anything about lymph nodes in that location. Hopefully it's nothing but I've been down this road before...
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Dysonsphere - very sorry to hear this. Hopefully it turns out to be nothing. Have you talked to your oncologist? Get their thoughts?
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Dyson- ugh the worry all over again. I’m so sorry. I hope they find it’s nothing and get you answers quick.
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dysonsphere, let's hope it is nothing. Hugs. I know that would stress me out.
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Hope everyone had a nice, long weekend! We took our first camping trip of the season. Felt good being able to go and not be in the middle of treatment like last year!
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Hope everyone had a great holiday! We went to the movies to see A Quiet Place 2. It was really nice to do something normal after a year of missing new movies!
My ultrasound did not find any swollen lymph nodes, just benign tumors. The swelling is still a mystery but I'm going to try some massage on that arm and see if that gets the swelling down.
I also wore a prosthetic bra for the first time since surgery and felt "normal' for once. It's like my brain went "ahhh" that's how I"m supposed to look. I might get implants eventually because I miss my old breasts too much!
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@dysonsphere - very good news, happy to hear that.
I went to a BBQ at my cousins house on a very rainy Sunday. Then Monday morning we took the hour drive to AC to gamble. It was a very good weekend, even if it rained for most of it.
Hope everyone is doing well. I went to my PS on Friday, we scheduled my exchange and port removal for July 19th. I'm going to Vegas July 8th and, my PS said it would be better to do it after Vegas since I can't lift or carry anything for at least 3 weeks.
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That’s so great Dysonsphere!
Morrigan- Vegas sounds fun! I think surgery post vacation is a good plan so you can enjoy activities and not worry quite as much about recovery while trying to relax and have fun
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dysonsphere, that's awesome. This shit is scary.
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dysonsphere - so glad that everything looks ok, I hate that we have to go through all these scares.
mmorigan - Vegas sounds great
ajminn - love the tats
scattered - the eyebrows look really good on you. I am so scared to try. But my eyebrows are really thinned out now.
micdpowers - I feel like my face looks old and blah all the time too. I'm not sure it'll ever be like it was.
We had a pretty quiet memorial day weekend, I had my old neighborhood bunco group over, and it was really nice to be social again. Kids had their last day of school today, i've been enjoying the good weather and long summer days.
I'm finally in my last month of treatment. One next week and the last one June 30. I know it's close but it still feels like forever. Hoping to schedule my exchange surgery for mid August and finally feel like I'm moving on!!
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Just wanted to pop in and say I FINALLY finished my Kadcyla last week, on June 30. This last one has left me pretty worn out, I’m so glad this is it. My oncologist told me I should consider myself a “well person”. It’s hard to believe after 18 months of infusions every three weeks.
I was supposed to go to Indianapolis last week as well to be screened and enroll in the clinical trial for Her2 vaccine, but unfortunately my father had a stroke and passed away the night before my appointment. So, it’s been a really strange and difficult week, losing my dad and then finishing chemo. He was not very well, but it’s still came as a little bit of a surprise.
Exchange surgery also finally scheduled for July 30. Looking forward to finally getting rid of the expanders I have had for a year. After all I have been through, I can’t imagine going for the Diep right now. My surgeon says I could always chose that route later if I’m not happy with my implants. I’m doing fat grafting with it, and he says that the lipo will probably be the most painful part of recovery
And my hair is still kind of a hot mess, but it’s little bit cute finally. I’m not quite so embarrassed by it all the time.
Happy 4th to all of you. We are going to my brothers new above ground pool and hanging out. Tomorrow and Tuesday are the services for my dad, today we are going to enjoy good weather, our health and family time together.
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Happy 4th!
@Fab4Mom - Very sorry about your dad. Congratulations on completing Kadcyla. Good Luck with the exchange, mine is scheduled for 7/19. He doesn't want to do fat grafting at the same time. I know you can't do surgery within 2-4 weeks of the vaccine doses. I also remember something about the DIEP.
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Mmorigan- My trial coordinator said it was ok for me to have surgery, as long as it was outpatient. Anything over night would be too much. Shouldn’t matter now because I go for my screening in August, but might not get started until September/October.
Good luck on your surgery! So weird how treatments are all usual so standard, but plastic surgery is all over the place with how it’s handled.
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Fab4mom- I’m so sorry to hear about your dad. Congrats on your last Kadcycla and good luck with your upcoming exchange. I agree, it would be hard to imagine doing a flap procedure after everything. I like my implants just fine, but unfortunately I think I have capsular contracture on my radiated side and I really need to get into my plastic surgeon to get it checked out (I’ve been putting it off for a while with things being busy and insurance switches). My hair is also still a bit of a hot mess…I now wear it in a mini low pony with a headband and lots of Bobby pins. It’s an okay look for now.
Morrigan- good luck with your upcoming exchange surgery too!
I’m curious about the HER2 vaccine trial. I don’t get to hear much about research opportunities at my clinic unfortunately. I’ll be curious to hear about it from you both!
We have been busy camping (3/4 of the last weekends). We spent the 4th camping up in Grand Marais, MN. One of our favorite spots. It’s a drive, but it’s worth it. I’ve also been running around every week night to different kids sports. Now I’m finishing up teaching summer school this week and hoping to have some “quieter” summer days before the new school year. Hope everyone had a great 4th and are feeling well!
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ajminn - camping sounds so fun. We actually just signed a contract to buy a tiny house in Michigan, right near Lake Michigan. It’s actually a manufactured home (trailer) in a very nice “resort” of others. But it has pine walls and a large attached screened in porch. The resort has two pools, a beach on a little lake with kayaks, paddle boards, etc. It’s a step above camping as we’ll have our own bathroom, kitchen, and a/c, but less of a commitment than an actual lake house. We are pretty excited, we close at the end of August.
Bummer about the capsular contracture. My friend had that as well after her exchange. She did a lot of PT and was able to keep the implant I think. I don’t fully understand it. I just never realized how many complications can arise from all these treatments. Especially with the radiation. Sometimes I’m stretching or just moving and I get a sharp muscle spasm feeling in my ribs in the radiated side. Not often, and it’s becoming less frequent, but I’m pretty sure it’s just inflammation from radiation.
I found out about this trial on here and Facebook. To qualify, you needed to have residual cancer at surgery after chemo. But hopefully the vaccine will be something that helps all Her2 patients eventually.
We have been extremely busy, like busier than I ever remember as a mom. It’s kind of exhausting, but also nice after a year of nothing.
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I had my exchange this morning. My PS doesn't like doing fat grafts at the time of exchangeb, he likes to wait and see what they look like. So my surgery was fairly quick and easy. Surgery started after 7am and, I was out and awake in recovery by 8:30am.
I feel pretty good, no pain or issues. I was a little sore from where they removed the port (yay, happy that's gone!) but, nothing from the boobs.
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mmorigan- great news. Wishing you a speedy recovery, it’s finally time to put cancer behind you. I’m jealous about the port, that’s the one thing that’s really bumming me out about doing the trial. I had to reschedule to mid August for my screening appt and I’m hoping to be done by November. And then get the port out in an office visit I guess. Which seems scary.
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@Fab4Mom - Are they insisting you keep the port for the vaccine trial? If so, why? Rutgers never accessed my port for blood work. I've had to give 16 vials of blood 3 times so far and 2 of the 3 times was through my arm, the 3rd was through the shiley when I went for Leukapheresis. I have one more big blood draw coming up but, I wasn't keeping the port since they never used it before
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Morrigan- that’s great! Glad to hear things went well overall. I’ve started looking into maybe doing some fat grafting, but I’m not settled on moving forward with anything quite yet.
Fab4mom- I also still have my port in. My MO originally said to keep it in a year post treatment, but never really said why? I don’t have anything accessed from it and have to get it flushed every other month when I go in for my Zoladex shot. Last visit I asked to get the port out since it’s more bothersome than helpful at this point and I am scheduled to get it removed 8/13! It’s scheduled at the surgery center but they only numb the area and remove it. I don’t need a driver or anything.
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Hey everyone! Hope you’re all doing well! I just made a post about hair growth post chemo. Everyone go on there and show me your hair growth. I added pics of mine as well
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Fab4mom, I'm so sorry about your dad. That must have been difficult.
Congrats on everyone getting/sched. their exchanges. I don't plan on doing mine until winter. I want to enjoy my summer.
hray1993, I'll find your post and post pics of my progress. I'm loving my hair. I had it cut in April or May and now I'm just waiting for it to grow back. It looked like shit so I wanted it to have some style.
I did get married on 5/27.
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SE - beautiful! congratulations!
Hray - my hair is crazy crazy so I'll have to post some pics of what I look like in the morning.
I still have my port because I'm too lazy to get it taken out. I just really don't want to go back in for ANYTHING - or if I decide to do more fat grafting to try and get rid of ripples, I'll have it taken out by the surgeon while I'm asleep - rather than the office visit way (which freaks me out).
I've had some soreness in my surgery-side armpit near nodes scar - which I suspect is just a muscle thing as my chest muscle is also sore/tight. Hard to tell exactly what it feels like because of partial numbness, but I moved up my yearly PS appointment to next month and reached out to my MO who ordered an ultrasound for this week. I'm not stressing about it too much - but of course it's a little concerning.
I'm coming up on my year mark for "cancer free" / anniversary of BMX.
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scatteredenergy, I love your hair and congrats on your wedding!! So exciting!!
micdpowers, my hair is a hot mess in the mornings. I literally HAVE to wash it every morning or it won’t lay down and not quite long enough for a ponytail yet. Definitely post some pics on my thread!0 -
Scattered- congrats!!! Your pictures are BEAUTIFUL!
Hray- I added my pics to the thread. My hair is absolutely nuts in the morning and I belong in an 80’s music video. I should probably get it trimmed but I haven’t yet.
Micd- I hear you on not wanting to go in for anything anymore! Hopefully your soreness resolves. Any little thing now sends me into a mini panic when it comes to pain/symptoms.
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Scattered Energy - Congratulations! The pics are beautiful, thanks for sharing.
hray - so happy to hear from you. Glad everything is going well.
Micd - i had my port removed during my exchange. I really didn't want to do it under local in the office so I figured let him do it while I was out.
Exchange surgery was a piece of cake. My only complaint is sleeping on my back again. I'm one week out so I'm hoping I can start side sleeping once I hit 2 weeks. I still have the breast binder on, I don't know when I can stop wearing it. I go see the PS on Friday so hopefully they'll give me instructions at that point.
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ScatteredEnergy- gorgeous pictures. Congratulations!
Ajminn- so glad you get the port out soon. Sounds like it’s really simple to remove
Mmorigan- my trial coordinator made a big point that they prefer us to keep our ports. As I get farther from treatment, I’m less enthusiastic about doing the trial, but I know I can power through and get the port out later this year. I was just wondering if the exchange surgery means sleeping on my back, not looking forward to that. So you have to wear a binder? Have you gotten a good look at your results yet?
Hhray - my hair finally feels a little cuter. A tiny bit. My front and top are ground slower still. I can tell because my bangs still haven’t reached my eyes. What the heck!
Micdpowers- I hope everything turns out ok with the soreness. I have a lot of weird aches still, and it’s hard to know what is something to worry about.
I went for a week long vacation with the family and it was great. Stayed at a cottage and swam, kayak, paddle boarded and relaxed.
Tomorrow is my exchange surgery. At 2:30, it’s going to be a long and hungry day waiting to go in. I’m nervous and excited. I’m so sick of these expanders and their weird shape. But I’m not looking forward to being in pain or the recovery. I finally feel normal mainly, and time for surgery 😩. But anything to get me closer to done with all Cancer stuff.
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Mmorigan- my trial coordinator made a big point that they prefer us to keep our ports. As I get farther from treatment, I’m less enthusiastic about doing the trial, but I know I can power through and get the port out later this year. I was just wondering if the exchange surgery means sleeping on my back, not looking forward to that. So you have to wear a binder? Have you gotten a good look at your results yet?
So weird how different hospitals are about the protocol. LOL
Yeah I have to sleep on my back again...hoping I can go back to my side after the weekend (2 weeks).
I have gotten a look they're OK. I can already see rippling on my cancer side boob so I know I'll need fat grafting in a few months. My cancer side is also smaller. I don't know if that will last once they settle. They were like that after radiation but after a few months they looked pretty symmetrical. Not sure if that will happen again. The good news is they look fine in clothes/bra.
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