Chemo starting April 2018
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I'm glad you have some fun activities coming up to distract you, urdrago. Focus on them.
I have my first-since-lockdown hair appt a week from today. I had gone to a new guy for my first real cut in early March (growing out nicely!), that guy had an idea for a different way to do my color which really intrigued me, had an appt for that on 4/1 but we all know how that went.
In other news one of my CA kids is back in Missoula (where he went to college) working from there for a few weeks. He is *so* happy to be with his friends, but also being able to, like, go eat a normal meal in a normal restaurant. My other CA kid and his wife might be coming home for a few weeks (HOORAY!!), cuz, again, if you're working from home does it really matter where that is? Hubs is heading back to the office July 6th and I can't say I'm shedding any tears. . . ;-)
Hope you all are doing well and staying safe.
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Life, it's nice to hear from you. I hope your lympedema is better by now. Yes, a picture update would be nice - except I look frightening right now after having my hair pulled up and squished under a surgical cap all day. Maybe I'll post one over the weekend when I look human!
Urdrago, I can only imagine the emotional roller coaster you must be riding right now. The remaining time until the next CT won't go by fast enough. As Ingerp said, I am glad you have some fun things coming up that you can focus on and look forward to. You mentioned that you love to stain wood furniture. Do you wear a mask when you sand/stain it ? Maybe that is the cause of the new lung lesions? Maybe ask your doctor at the next visit? Meanwhile, it might help to talk to someone. Does your MO offer a social worker who could help you through the next few weeks via a support group? Thinking of you, sending ((((hugs))))
Ingerp, good luck with the hair appointment! Congrats to your Missoula son for getting back to a more normal life again. I hope your other son can come home for awhile.
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Gawarrior, no sanding but staining outside so I wouldn't know if it might impact me. I think it just venting and than moving onward. I need to do some R & R bcuz Ive not taken a vacation in awhile. And yes I will see someone if I anything get more over whelming. Thank you
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Ola! So I kind of did something today. What do you girls think? I was so nervous I honestly didn't know if my hair could handle the chemical. I decided I had to face my fears so I went for it!
I had my first check up with my oncologist after 6 months. A long time ago when I first started out on this journey they had me take a bracha test. It was negative. Now they're saying that they can test more genes and they want me to take it again. The thing is, I chose a lumpectomy. It was a struggle to make the decision but that's what I went with. I've tried not to second-guess myself and just move on. Now if this new test that they want me to take shows that I do have the bracha gene they will suggest that I get a double mastectomy.
Other than dealing with some joint pain, and extreme dryness down under. I am doing okay. I have manage to put all the weight on that I lost during chemo. I also see where I'm getting weaker because I'm not doing any kind of muscle stimulation or weight training. I guess I need to get back on that. Honestly I've just gotten really lazy about certain things. I'm pretty sure I did a better job during chemo and radiation on eating good and exercising then I do now. LOL
How is everyone doing? Catch me up peeps! I am really behind!
Here is my updated new hair style. Been feeling kinda down lately and I needed a change to help perk me up!
Picture up date time!!
Huggs to you all!
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Life you look awesome! I love the new 'do! The color is great for you (your brother will be happy, lol). Still have some chemo curl, I see (or is that your natural wave)? Adorable either way! Re retaking the braca test - that's a tough decision. On the one hand you want to know so you can deal with it if it is positive, on the other you just want to forget everything and move on. Not sure what I would do in your position, but if it helps - I had a BMX and life goes on. It's not like having my old boobs, but I have my nips and skin and now they look better (perkier) than they ever did. Ever. My only regret is loss of sensation, but I am happy to trade that to be cancer free. I hope the new hairstyle has helped to perk you up.
I haven't gotten a hair cut yet (ever since chemo) because I have to pull it up into a ponytail, tuck it under a scrub cap and layer all this other sh*t on my head when I work. Been back at work 2 weeks - I'm exhausted, have a sore arm (pulled muscle?), sore back, and neck, can't breathe in the n95 mask, daily headaches, and generally hating every second. It's time to retire. I wasn't going to go back after the shut down but have decided I'll muddle through a little longer and probably retire by the end of the year. Why did I do this to myself? I'm asking myself the same question. I keep thinking that after all we've been through, we should just be a able to enjoy life, but noooo... Sigh. Rant over!
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Life—give yourself some time to breathe. I like having information so I had genetic testing done, even though I’d finished treatment. The reason was that if they’d found a mutation, I’d get monitored more frequently. And I love your hair! It looks natural to me.
GAW—I just got an e-mail from my dentist yesterday outlining all of the procedures for appointments going forward. Honestly I think I’m gonna skip this next cleaning. I’ll still get cleaned by my periodontist in the fall but even a simple dentist visit sounds really hard. I can imagine it’s driving you crazy!
I have my own hair news. I had my first real cut since before chemo on March 13th. He wanted to do something different with my color and I had an appt for that April 1st. Well I finally had that appt yesterday. These are awful before-and-after pics but you’ll see there was 1-2” at the end of my hair that was still weird. He asked me if I wanted to bite the bullet and get rid of it and I said sure. I do want to grow it out some but I *think* I can pretty much call this my end to chemo hair. I’d read that typically happens around two years out which will be in August for me. Excited to see where I am later in the year. I really like my new guy!
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my mynphedema surgery has failed. Crying.
Urdrago, so sorry, but stay optimistic.
Can’t write anymore. Too upse
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Inna,
I'm sooo sorry to hear that - I've been watching for an update on your surgery.
What surgery did you have? My lymphedema is a horrible struggle too, so I was considering a consult too. Who did it?
It's such an awful awful condition. I bandaged for 4 1/2 weeks, I'm wearing constant compression, night garments, clothes don't fit, I use the pump daily. I wish the surgeries had better success, and I wish they would come up with some new ideas for how to resolve this.
Cry away - I've got your back.
Linda
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Oh, Inna, I'm so sorry - how disappointing and frustrating! Hoping there is a next step you can take to resolve it.
Linda2119, I'm sad that you are suffering, too.
Inger, love the new hairdo! I would say your chemo curl is definitely gone - congrats! RE your dental visit - it's hard for us dental staff, but not at all for the patient (at least in my office). It's simply wearing a mask while in the office, getting your temperature checked and answering a questionnaire about possible symptoms. If you are already seeing a periodontist, then I would advise you to keep the regular appointment now (unless you're only seeing a periodontist for gum grafting or an implant). You want to keep the perio disease under control. If there is a second wave or more shut downs in the fall, you may be less likely to go to the periodontist then, which would mean even longer between your cleanings.
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Hello Everyone,
Since we are talking about our hair, mine is finally feeling back to normal! Here’s a selfie ( which I’m not very good at! Lol). This is 2 yr 3 months from the start of chemo.
Hope everyone is doing okay. I’m starting to feel scan-anxiety coming on....CT on 7/10
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Hi Krissy! Lovely pic, it's great to put a face with your name.
Your hair looks beautiful! I still look like a poodle, lol. You're also tnbc like me - what are they doing a CT scan on? I don't have anything scheduled like that. Which means I'm worried now...0 -
GAWarrior
I've had CT scans every 6 months on chest, abdomen and pelvis since chemo ended for me. I've also had a nuclear bone scan twice. Once before surgery and then again shortly after chemo ended. I have several lesions in my liver that are cysts..and were there before I had cancer. I had an MRI On that as well as one was suspicious looking 6 months ago. I have a great Dr.-patient relationship with my oncologist, he's very thorough, blunt, and answers all my concerns. There are oncologists that don't order scans after the fact, and do so only on patient symptoms and complaints of pain. I will be 2.5 years in the clear at the end of this month ( if my scan is). Half way there for TNBC! Perhaps because I'm young, family history of BC, BRCA2 positive, and 2 bouts of cancer...my Onc is overly cautious. This is part of my survivorship plan. I also get Zometa infusions every 6 months , however, that has been delayed due to COVID. I am treated through City of Hope.
Have you had any scans since finishing chemo? What's your survivorship plan in place?
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Krissy your hair looks completely normal! Congrats!!!
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Hi Krissy, thanks for explaining. I have only had a bone scan (i requested due to back/neck pain - it showed arthritis only. Who would have thought I'd be thrilled to "only" have arthritis, lol). No other scans, though. But - I am not brca+, have no family history of bc, and this was the first go-round for me. My MO is quick to offer testing if I have a concern, but it doesn't seem like he tests anything on a regular schedule. I won't get a mammo either because I had a BMX. I had asked what was next when I finished treatment and he'd said he doesn't run the blood tests because they have too many false positives and freak people out. It really sounds like he will just test something based on symptoms. Not sure how I feel about the unknown, but am also happy not to dread and stress over tests..
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I am loving some of these pictures poppin up! Still waiting on a few more! 🤔🤗
INTERG I know you miss your long hair but you look so adorable in your style that you have going on right now! As far as the testing. You're right! Why not get the test done and then be monitored more frequently if need be. I guess I just don't want to have to accept the fact I may have to make another decision. Grow up and put my big girl panties on and get the test done! Right?!
GaWarrier I actually had a perm put in that's why it's so curly. I am loving the super easiness of being able to just wet it down and put some curl cream in it and roll out the door! I went and got my teeth cleaned the other day and felt so bad for my gal to have to wear all that armor. She too said her back and neck are sore by the end of the day because of the extra weight. I didn't even think about it until I got to talking to her and then saw your post. No more complaining about having to wear a light little mask when you have to wear all that armor!
Innab that really sucks about your lymphedema surgery not doing what it was meant to do! Will it take some time to work or is it a done deal? I just finished up my last appointment with my lymphedema specialist. She showed me how to do my own massages, re-measured me for a new sleeve and gave me a pep talk. Yesterday I was out at the softball field because the BF was in a tournament. The sun started beaming down and I realized I forgot to put sunscreen on my arm. Next thing I know my girlfriend and I are walking around ballpark looking for somebody who has sunscreen. I would have never done that before. I would have just sucked it up. I just don't want to know what it would be like to sunburn a lymphedema arm!
Undrago how are you feeling? Have you gotten in to get any of your test done to see what's going on with your lungs yet? Have you got to go camping yet and did you buy your mug?
Krissy37. Hello! Thank you for joining in on updated picture time. :-) Your hair looks very nice and this is a very nice picture. You look like you're doing very well. I know July 10th is already passed but I still want to wish ya luck! My doctor does not do scans but I do get anxiety when it's time for mammograms and blood test!! 😬
Well I guess I better get on it. It's Sunday and of course I waited till the last day to get all my chores done so that I can get ready for the week. Did I tell you ladies that I got a new job? I'm not particularly caring for it though. It ended up not being what I applied for. I'm trying to give it more time but the atmosphere around there is maybe just a little too much. I don't know. I guess time will tell.
I'm curious on your individual states if you're still doing safe stay at home or if you're all back to work? Looks like Wyoming is opening up again. They say that there's some cases that are popping up because of it. One really honestly doesn't know what to do at this point in time. With my new job I never missed a day of work nor did I not clean the medical facility at night. Nothing really changed in my world. I've been miserably hot lately because my house has been getting up to 90 degrees inside! I bought one of those air conditioners that you stick a hose out the window but it only dropped it down to 81. I think I'm going to put the swamp cooler back in the window. It kept my house at a nice 68 to 70! LOL
Hugs to you all! Looking forward to seeing more pictures and hearing about new exciting adventures for you all!!
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Ladies I live for your updates, and really loving all the beautiful pictures!
I'm so sorry Inna that your surgery didn't work out, there are all these small and not so small leftovers from what we've been through that are a constant challenge and struggle moving forward. Don't lose hope.
GAWarrior I'm with Life on this, I'm no longer going to complain internally about wearing uncomfortable masks in the heat when I walk the dogs; you really are a warrior to be able to put up with all of that. I am alsobe absolutely ready to retire, NOW, but I've still got to put the 2 girls through college. We don't do 'student loans' here lol; and kids don't usually leave home until they're married *horrified face*. I don't see that happening with my girls though, it's my dream to see them living their own lives as strong, independent women, which probably means I have to accept that they won't be living with me in Cairo. (which is the #1 worst megacity in the world to live in if you are a woman). From experience I can say that is 100% true and a daily struggle for me and them.
Life I love, love, love your new hairdo, and the color is so natural.
Undrago, have you had any bad flu recently that had a nasty cough? That can sometimes cause weird things to show up on lung scans.
Lockdown in Cairo is interesting, in that even when we had a 3 week curfew and a shut down of commercial enterprises, schools, universities, and remote work, no one followed it. The 'official' case numbers are very low, but I work in social development and I have a lot of friends who are doctors and healthcare professionals on the front lines, and they assure me we are in the hundreds of thousands now.
I tried a total lockdown for myself in the beginning, but it's really not sustainable, especially because my husband is still going to work, and my daughters (21 and 18) have had enough of staying home as well. Social distancing with family is not easy, and I'm not really as vigilant as I was in the beginning. I can't not hug my kids, or lock myself up in a separate room all day. I don't know how long I can keep working from home (which has turned into me working twice as much as I ever did in the office). Everything is still up in the air whether and when my girls go to university in Canada, and next semester is officially on-line. I guess they will stay here till November? Hopefully things will be clearer worldwide by then *shrugs shoulders*.
Spoke again to my oncologist last week about my upcoming blood tests and scans, and he said just stay home for now. It's too risky for you to go to any clinics or centers. All that means is on top of everything else going on, and anxiety about COVID19, I can now enjoy even longer low key anxiety about my tests being delayed.
Sending all of you positive & loving vibes. We've already been through so much worse than what we are going through now. Wishing you all real peace of mind
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Central VA update--I'd been working from home before this whole thing but hubs has been WFH since late March and I am *so* ready for him to go back. They keep pushing back the date--now they're saying August. One friend of mine said she is going back to the office occasionally, but I think most people are still staying home. Not sure if I told you one of my CA kids (and his wife and dog) have been here for a couple of weeks and it's been *wonderful* having some young people around. We're starting to occasionally have meals with friends but only at their houses (actually--now that I think about it we ate at one local brewery but were outside the whole time and there was a lot of spacing between tables).
Life--sorry you're not loving the new job. And I get you with the heat--we've been having 90+ for several weeks now and no end in sight, but that seems to always be the case this time of year.
I had a six-month check-in with my MO last week and have one with my RO tomorrow--they were both delayed from May. I'm just really wondering when I'll start some more serious exercise and quit the cookies/crackers/ice cream/. . . . Aiyiyi!!
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Ingerp, I started out so good about not having desserts and sweets when I was diagnosed, but that has all gone out the window 2 years later, lol. I'm back to my old bad habits (although I'm trying to have smaller portions!) - so know that you have company. Glad you are enjoying having your son and family around. I want to go to CO to see Bryce next month but worry that I won't be let into the state unless I quarantine, since some states are doing that and our cases are really rising now.
Krissy37, hoping your tests all came back fine!
Life, congrats on the new job! I hope it's something that you will like as you settle into it. Glad you're done with the lymphedema specialist. Sounds like you need to get that swamp cooler up and running! We've had a mild summer and a lot of rain - I haven't even turned on the sprinklers yet, which is unusual for GA in mid-summer.
Batata, so nice to hear from you! I am, however, sorry that you have to put up with archaic rules just because you are a woman. I cannot imagine. Hoping your girls can live the dream you want for them (sorry about having to pay for their college before you retire!). You mentioned that Egypt is fudging their virus numbers - I think many countries are also doing that (China included). Here in the US, I think some of our numbers are overinflated. For example, they count deaths as being from covid if you test positive - regardless of whether you died from it or not (so, if you go into the hospital in mid-massive-heart attack, but also test positive for covid, and then you die, they say your death was from covid, not the heart attack. I have a friend who is a medical coder - she says it's because the hospitals are getting extra money for covid cases. She's seeing the extra charges for covid).
GA update - the metro-Atlanta county I live in has the highest number of cases in the state and that's rising fast. The governor has forbidden the local governments to mandate anything (like they did before the shut down), although Atlanta's mayor and Savannah's mayor have gone against him and mandated masks in public areas. Hubby and I are eating in restaurants (they've been good about social distancing tables and the staffs are wearing masks). I'm getting massages, going to doctor appointments. We are in the stores...It's pretty much life as usual except for having to wear a mask. I figure I'm on the front lines, and much closer to people's uncovered mouths at work than in stores and restaurants, so why not?
Also, I gave my notice at work - I just don't want to put up with all the new covid miserableness, plus I am having a lot of trouble with my arm/back/neck. My boss would like me to stay on part time - we'll see, once (if) he can find someone to replace me. Dental professionals are leaving the business in droves so it may take him awhile. Thanks for all your mask/armor sympathy, lol.
Oh, I may have mentioned that I had problems with fingernails and toenails while on Taxol. About a month ago, my big toenails, which were growing really weird PFC, ripped in half, so I saw a podiatrist. He tested the nails for fungus. Turns out I am hosting 3 different types of fungi, plus a yeast <eye roll>. Am now on antifungal pills - which have potential liver failure and death listed as SEs. Gotta laugh, because what else can you do?
Last, Kelly Preston's death caught me off guard this morning and got in my head. The first thing I want to know is what type of BC, what stage, what surgery, what treatment did she have so I can compare to my own. Its craziness, but I bet you all do the same thing...
Stay safe, everyone!
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GAW--I'm really happy to hear about your getting to leave the rat race but if you can work it out, part-time can be a nice transition to full retirement. I'm hoping to take advantage of the federal government's re-hired annuitant program. You can retire and then be re-hired up to half-time for up to two years without any offset to your retired pay. Between the two I think I'd be pretty much at my same pay for two years--not bad.
I am very sympathetic to your toenail problems. My family always tended toward toenail fungus, and I've had it treated several different ways. Those pills were the best/longest-lasting, and despite the warnings, most people do fine with them. They *do* recommend stopping alcohol while you're taking it. Before my dx, I was seeing a podiatrist for laser treatments, had one toenail removed, . . . . but I was never crazy about the guy. I'd say all but my big toenails are pretty normal now, and I've kind of given up on my big toenails. I figure I'm saving a lot on pedicures--just doing my own for now.
I hear ya re: Kelly Preston. Those celebrity BC deaths hit all of us, and yes I'm curious what type she had. So so sad that this is still taking so many lives.
I saw my RO today and have a slightly new schedule re: follow-ups. I'll see my MO Jan/Jul, get my annual mammo in May, and will see my RO annually in October. That spreads out the times I get looked at, which makes sense but I am a little sorry not to be seeing her for 15 months--she really is my favorite doctor of all time. FWIW, she is about three people removed from someone who works at one of the big drug companies, and has heard that something might be happening by about November--she wasn't sure if it was a vaccine or just a large clinical trial, but she confirmed that this is all happening at lightning speed. She's tired of living with a mask on.
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Ingerp, good idea for your retirement transition. My hubby works for the VA - I mentioned it to him, but he says he doesn't think it would apply to what he does (internal auditor). In my case, I may do 2 days of hygiene a week, but I'd be just as happy (happier probably) to be done entirely. I have other side gigs and will likely just work on those and do something I want to do for once. It's good to know that the anti-fungal pills aren't usually a problem - I feel better, thanks! They put that liver warning front and center so I was worried. I'm not a big drinker anyhow, so I was already figuring I would give up my occasional glass of wine for 12 weeks until I'm done with the RX. It's good you're getting your doctor visits spaced out - at least someone will have their eyes on you every few months. Fingers crossed about a vaccine - although my sister was just telling me tonight that early studies are showing only about a 6-8 week immunity after having had it, which would make a vaccine pretty much meaningless. Time will tell!
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Update: I'm happy to report my CT scan came back no evidence of disease! Phew!! The struggle is REAL...scan anxiety is REAL..
So I went to my plastic surgeon last week. Hadn't seen him since my drains were removed and I was healed up...by my choice. I just didn't go to my follow up appointments. For one it's an 1.5 hour drive. And two, I guess it Just wasn't something I wanted to go through at the time.
We discussed fat grafting and possibly re-doing my prophylactic side. I have the implant under the muscle, it's always bothered me. My DR gave me options to try to improve it, but I may just go for re-doing a different implant to over the muscle. Yes it's more surgery, but thinking it may be more comfortable. Idk. Something to think about now. I always seem to say to myself, “ you're TNBC. Why go through the Reconstruction surgery pain AGAIN? You are in the dreaded time zone of a reoccurrence...at any time... Ugh
GA Warrior - I see you had fat grafting. Where did the surgeon take your “fat “from? How was your experience?
Hope everyone is doing well
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Krissy, so glad everything came back okay with your scans! Re: implants - mine are over the muscle. Mine are comfortable, with the exception that the right one feels "tight" - that's the only way I can describe it. It's more comfortable to wear a bra than not, because of this. I just saw my PS last month and he informed me that I have capsular contraction on that implant (ugh), so I'm guessing that is why it's "tight." He offered to do surgery to correct it, but it doesn't bother me enough to undergo anesthesia and recovery again.
When I had fat grafting done, he took the fat from 6 different places - front and sides of thighs and my belly. I did an implant swap at the same time. Honestly the donor sites were more tender than my foobs! Lots of bruising, but I took arnica and pineapple supplements, which are supposed to aid in healing. I was tender for a couple of days, but it was not a big deal. I mostly felt it when pulling up my jeans or sitting down/standing up. The bruises were gone after a week or so.
They put in a lot of fat because you lose about 40% of it over the time it takes to get the blood supply established in the grafting site. When I first saw the results, both hubby and I said, "whoa - stripper boobs!" Lol. They look like regular boobs now.
As far as why go through reconstruction...you are approaching this like you're expecting to have a recurrence...but you may never have one! IMO, go through your life as if you are cured - otherwise you're (1) putting your life and happiness on hold for something that may never happen, (2) you're giving your possible happiness/contentment away to "ifs", thus not truly living, and (3) you are opening yourself up to regrets if you do have a recurrence (in that case, wouldn't you rather say "I'm glad I did XYZ when I did because I've gotten to enjoy it.")? Right now you are stating that you are not satisfied and are uncomfortable, but you'd rather put up with that indefinitely because, possibly, maybe someday, you might maybe, possibly, have to deal with another diagnosis. Or ten years from now, you could be looking back saying, "I've been dissatisfied and uncomfortable for the last decade - sure wish I'd have had these boobs redone ten years ago!".Just my two cents.
Its a tough decision either way. Good luck! 0 -
Hi everyone, Ive been trying to stay busy while I wait for new CT scan 1st week of Aug. Promise I'll let u know when I do. House is coming together Ive had my share of DYI projects.2 weeks ago started Camping and spending time with friends in the lake on boat or rivers tubing! Same plans for the up coming week taking my niece. I also plan on pulling out the camping chairs taking a breathe and reading thru latest post. Im not back to work 100% bcuz of Covid we are to come in as needed. I added a pic, still have ringlets and hair is straighter on top..maybe bcuz I bobby pin the heck out of it everyday. Honestly i dont do anything to it any more.. call it lazy.
This last week have a fellow breast cancer friend is going thru reoccurrence she is very similar to me in staging & dx of TNBC.. asking for prayers as she starts Chemo again this week!
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Krissy--hooray!
Urdrago--you are so beautiful. I love your hair! Best wishes to you and your friend. It just never ends, does it?
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Udrago, looking good! Your hair is awesome! Mine is getting long, I need to cut it, but I haven't because it tucks under my scrub cap better when it's long. But I'm looking more like Roseanne Rosannadanna every day, lol. Yours looks very normal and not the least bit wild, yay! Sounds like your summer is going well. At least you're getting out and doing something. We are baking here in Atlanta, so I am hibernating in the a/c.
I am so sorry to hear about your friend. That's a kick in the pants. Is it a local recurrrence? Gosh, can't imagine starting chemo again. Best wishes to her for an easy time of it.
I've been thinking about you. Please keeps us posted. Sending prayers and good vibes.
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Urdrago, thinking about you as you get your follow up scan. Wishing you all the best news possible!
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Gawarrior, thank you. Stayed business all weekend with niece, sister, and grandbabies camping. Kind of just wanting answers as this point. I go for CT tomorrow and results tuesday late afternoon.
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We'll be thinking about you, Urdrago.
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P.S. Second anniversary since the end of chemo. WOOT WOOT!!
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WOOT WOOT IngerP!
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