Chemo starting October 2017
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Wow I swear I hit submit on a post and it’s not here so I’m going to keep at it. This is a lot like Facebook for me as I read more than I post but I have to say again that I appreciate having you all by my side. The pictures make me smile.
CONGRATS to all who have finished chemo, what a great cause for celebration! And Yay for those with clear scans and clear margins! Whoever thought our worlds would be full of this stuff?!
For me it’s just three more and only Two more Taxol after tomorrow. Last week they did 1/2 Taxol for me as my neutrophils are always low but I know I felt almost normal last week, this week I was back up to 80% and not normal, Taxol has not made me sick like on the couch with flu but I am so Tired so Tired and stuffy nose, crazy dark nails and the neuropathy for which I’m taking 1 tsp powder Gluatimine twice a day. I know when I’m 0% Taxol things will start to get back to life as I knew it. Still, Take That cancer! You suck!
I started all of this with a BMX and I wore only an an ace bandage, for weeks!0 -
Hooray for Agatha for crossing the chemo finish line! Way to go!! 🙌🏼👍🏼😃
Good luck this week to DKK and Lisa with final chemo!! You go girls! Finish strong! 💪🏼💪🏼💪🏼
Jennifer-- love the mask! Out of the mouths of babes!
Joyseeker Sara-- how you handling last chemo? Are you theough the steroid crash? I know that was never your favorite. I'm finally starting to feel strength returning (almost 2 weeks PFC) and Looking forward to hearing about yours too!
Petey (for SIL) -- I had BMX without recon. Is she having ALND too? That was the side that took longer to heal and had drains there for 3 weeks....other drain for 2 weeks. Everyone's advice great. I used wedge pillow and was fine, but used pillows at both my sides too under my arms. I loved camis-- without shelf bra. Never used the hospital cami. Weird and bulky to me. I wanted smooth, and they were easy to step into and pull up like a bathing suit. And I just wore button up jamas over the cami.
And to all you post chemo surgery gals, if you can make it through chemo with your head held high, then the surgery will only be a blip. You just proved to yourself how strong you are! Surgery has nothing on you! It's just important to listen to your bodies and take it easy. We'll all be cheering for you!
I can't believe I am 2 weeks PFC. Still dealing with the fatigue and some swelling. My mind wants to start doing all sorts of things, but my body keeps saying-- hold it Missy--you still need to get over this last infusion! Trying to get my rads plan together....trying to enter a trial group for proton therapy at MDA. I'm so nervous about being re-radiated to my chest-- heart & lungs. I know it will all work out. Feeling a little lonely too. Avoiding gym and stores because of germs, and friends all going about with their busy lives. Been binging Netflix! Maybe Netflix is my new best friend! Ha ha! Anyone read a good book lately that they can recommend? Something fiction and not about cancer. I've read so much about cancer these past 6 months, I'm a living cancer encyclopedia!
Couldn't fall asleep, but going to try again. Gooooo Lisa & DKK!!! 😃🙏🏻
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Just popping on to say congrats to everyone who wrapped up chemo last week. It’s crazy how far we’ve come and how far we continue to go. Wishing everyone still going through chemo the best. <
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Mama - She is having ALND on both sides poor girl. I warned her that was going to be sore. I'll have to mention the camis again.
As a librarian, I have LOTS of books to recommend. :-) I am listening to The Alice Network and about to start The Life She Was Given. Next on my list is Before We Were Yours. I also read Mr. Churchill's Secretary and want to read The Hate U Give. If you have other suggestions for what you like, let me know!!
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Hello eightoutof...
Hoping you're recovering well from chemo. Have you found a trial to enter? I'm going to mention to my MO that I'd be interested in any trials that were tracking things like good nutrition or exercise.
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surgery tip regarding drains. You can use a hoodie that has the front pouch, just wear it inside out, that way the drains are hidden inside the pouch.
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Hiker, Yes, I did the flap in the same surgery as my mastectomy and I'm very glad it was all done at once. The only tough part was dealing with all the annoying drains...they really got in the way of my clothing (read underpants!). I have no nipple but at my age I figure no one looks anymore so it's no big deal. The major plus in all of this is that I have the flattest stomach imaginable. I can wear almost any clothes I want and never worry again about that little belly bulge. If for nothing else, for this it's worth it. In fact, my girlfriend said I'd had a "tummy tuck boob job!"
I'm on now to Proton radiation therapy and learning all about it, more than I ever wanted to know. Chemo did not go well for me, I had such bad reactions that we had to cancel my treatments, so I'm hoping and praying the radiation is the last ordeal. So far, so good. Just awkward and very uncomfortable, but better than chemo for sure.
Good luck making your decisions!
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Tewks, congrats on the flat tummy! I'm so sorry that you couldn't tolerate chemo. Hoping that proton therapy kicks cancer's butt. BTW, you're the first person who I've seen who has a Grade 1 TN tumor. Most are grade 3s. That has to be good news because it's slow growing, no?
I'm actually considering a tummy tuck after all this is done, because breast cancers love fat. I'm really trying to lose weight, but I seem to have plateaued. I will try again with more effort after I recover from surgery, but I figure if I can't get rid of the tummy fat via diet and exercise, I might as well have those fat cells cut out.
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HikerVA, Lisa or any of my other TN counterparts.
Have you been told you need rads after BMX?
My PS does not put expanders in until after rads (not at BMX time), I know many do. But I trust my PS's opinion, he is thought to be one of the best in area.
Last meeting with MO, he said he didn't think I needed rads but will check with RO. But I don't know how that answer can be for sure before surgery and SNB (and the pathology on everything). I have read even with one positive LN, havings rads reduces recurrence risk by 32%.
My initial MRI showed my left nodes were mildly prominent but nothing biopsied. And one of my internal mammary nodes was 5 mm (high end of normal size from my understanding). I know inflammation can cause this and chemo many times clears it up Another MRI scheduled between #5 and #6 (last) Taxol. So nervous to see the results but also want to know. I feel like it will help make decisions going forward.
I am sure BMX is the right option. Its just delayed recon or not now.
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Loving the updates. Too tired to post much. Last round of Doxetaxel totally took me out. It’s been me, the couch, Tylenol and the Olympics since Thursday. Holy moly. Was not expecting this. I am travelling 1.5 hrs from home tomorrow for my Rads consult. I’m betting I’ll be sleeping all the way there and all the way home. This is by far the most fatigued I’ve been. Only consolation? Last time....
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Hang in there Sara!!!
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Thanks Sara. I guess I had it in my head I was “done”. Forgot about recovery. Ugh. Hopefully a nap and a bath will help
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I can relate Sara, this #4, I have defiantly been more tired even now 6 days out
And I think my anemia/low red blood & hemocrit is back. Sitting here in the car or laying on the couch last night watching the olympics and my HR is 90-100.
Just when you think you got this, chemo tells you. Oh no, your not done yet!
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Jennifer, wanted to say, the mask and your daughter's response was so wonderful, we all needed the laugh. I understand the concerns about the surgery too. I wanted to have both the BMX and my reconstruction at the same time because I did not want to have to go through recovery with drains twice. But even though all tests including the last US show no sign of lympnode involvement, they insist on waiting for the testing to come back from the surgery. My surgeon said there are some immediate tests (frozen) that can be done at time of surgery on the nodes, but there is a 10% chance of inaccuracy and she insists that the wait is worth it, in the event of a bad reading. My PS is placing the expander at time of my surgery even though I want to stay small. I questioned my BS about this and she said it does make a difference in the outcome of a better shape overall even though I am having the DIEP. So to answer your question, my PS is placing the expander even though they may have to do rads after. It must not affect the expander or implants if they are placed at time of surgery and before rads. My surgeon said that it DOES affect the DIEP and if I had rads after, it would most likely kill all the live tissue from the DIEP, so that is why I can not have both surgeries at one time.
I have been on the page Before/During/After Surgery and reading over the lists of stuff people have recommended and making my own lists for hospital and after. I have not read the one about the hoodie, 70Charger, what a great idea, and I could do the same with my zip-up fleece for the drains. Lisa, I appreciate your mentioning about renting a recliner from Medical Supply. I am afraid that I will not be comfortable in my bed and I do not have a recliner. I have also paid all my out-of-pocket for the year on insurance so like you, it would not cost me anything. I am going to the Medical Rental place next Friday and check them out.
Today I have been really DOWN, more than any other time since diagnosis. I called in sick at work (felt guilty) but I had palpitations all night and this morning, I think the worry about surgery ( I am happy with the decision to have the BMX and DIEP no wavering there), and I am happy to have it finally scheduled, but the WAITING is hard... I wanted to cry this morning and have not ever cried yet. Was beginning to think something was wrong with me that I had not... It was so nice to know I could open up here and have support. I know that there will be resentment at work from my co-worker, so not looking forward to that either. I am having to hire a part time temp replacement so the next two weeks will be busy. I have about 5 resumes but now have to schedule those interviews quickly! I know the time will pass fast, but I just needed today to digest it all... Thank you everyone for being there.
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Peoy if I had your hair I would not need a hat!
I was out tonight and had a couple of hot flashes I guess, my head started heating up and I felt like I was sweating (this usually only happens at night); I really wanted to take the hat off but felt too self conscious being out in a busy restaurant. I knew I would feel cold in a minute anyway! All amped up on the steroids now, could have been that! I will take a Benadryl tonight for sleep aid. The nurses had been suggesting it but I had the Ativan if I really needed it, thing is it didn't really work, I still woke up wide awake several times a night. I finally tried the Benadryl last week and I did/do wake up a few times but instead of feeling wide awake I feel very sleepy and wanting to very much get back to sleep. I get up feeling sleepy which is so foreign lately that I welcome it, even though it's time for work! I
This came with a hat one of my sisters got me, I wear it every day.
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Jennifer, I have not been told that I need radiation after surgery. I kind of doubt that I will need it unless they find LN involvement. If the biopsy reveals cancer in my breast, I believe that my MO said that he'd have me take some sort of oral chemo. But since the biopsy results won't be known for several days at least, I'm positive that the TE (or immediate implant) placement will happen prior to the biopsy results.
Sara, I'm in the home stretch of my Taxol and I have been especially tired lately. I've been regularly sleeping 10 hours a night since Thursday night, and yesterday I took a 2 hour nap to boot! I'm sure it's the cumulative effects so I'm not particularly worried, but it is amazing how I went from feeling almost normal to feeling so tired. I've been forcing myself to exercise 20 minutes every day, but I've spent a fair amount of time on the couch enjoying the heck out of the Olympics.
HikerVA, I had a serious bout of depression last week. I'm usually a pretty optimistic person, but last week I allowed some fear to creep in and it overwhelmed me for a day and a half. I finally snapped out of it, but it wasn't easy. We've all been through a nightmare these last 5 months, and many of us still have to go through major surgeries, and we've endured it with a fair amount of good humor and grace. We women are much more stoic than men, and are especially hard on ourselves. (By contrast, men are big babies. You should hear the men in the infusion room; I've heard less crying in a nursery. Last week, a man was complaining because they had to stick him twice, and I wanted to show him my mangled fingernails and say, "Dude, suck it up!") Anyway, I hope that you can give yourself a break already. And quit feeling guilty about taking a mental health day. You've worked hard to establish yourself as a reliable and valued employee, and now your company and co-workers owe you some latitude.
2 more days!!!
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Hiker - You hang in there too. We have to give ourselves permission to have "those" days. It is only natural and doesn't mean we aren't strong. I hope you aren't offended if I say, screw you coworker. She needs to get over herself. Whatever her issues are - personal or professional, you need to brush those off now and focus on you. Don't let her make you feel any more guilty than you already make yourself! (Because we all make ourselves feel guilty about how this affecting our lives.) The surgery stuff is stressful too I am sure. I can't imagine the decision that you have to make. So give yourself a bit of a break. You are going to have enough to deal with with those interviews. Get through those, then take a breather!
Trees - I've been there...desperately wanting to rip the hat off. Ugh that doesn't feel good. How much Benadryl do you take? I take two every night before bed. I'm stressing a bit because I've heard that may be an issue when I start Tamoxifen. I don't want to do any prescriptions with weird side effects! I love your bracelet. I'm thinking about getting my SIL and I one of these (though I'm not sure what word yet):
Lisa - Isn't it amazing how strong so many of us can be?? :-) A few days of depression throughout this whole thing is not a big deal!!
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Hello Ladies. I'm sorry if this offends anyone but as one web page said, I'm offended by the word Cancer and some days ya just gotta say.....
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I LOVE it!! I think it's awesome!!
On a totally softer note.... LOL
I've been wanting to give my care staff a gift. I thought Valentine's Day would be good. So I put together these. One for the front desk staff and a bigger one for the back treatment area and all those people. I made a tag that says, "For the hearts and hands that take care of us Thanks for all you do! Happy Valentine's Day!" I know they get donuts and cookies a lot, I wanted to do something different. :-) I added some filler paper and little tissue paper hearts that came in a gift I got this weekend, so they look a little nicer now than in the picture. I got all the stuff for cheap at Walmart. Well...the candy hearts I had to get at Target, but the lotions and bowl/box I got at Walmart. Happy Valentine's everyone! Hope everyone has an ok day tomorrow!
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Sara, I am partial to the saying breathe. I remember in the flurry of appointments during September. I would play a song "just breathe 2am" on my phone before walking into doctor's office/hospital. As an attempt to calm myself. I need to start playing it again and finding outlet to calm myself. I was hoping to feel better by yesterday to start exercising again but it just hasn't happened.
I always hate to mention the down moments. As I don't want to bring anyone else down. I have been struggling the last few days between anxiety and depression. Only sleeping 3 hours a night, googling way too much, going back and reading my initial imagines from dx and worrying. Went to pay some medical bills this morning and came across a bad debt charge off even though I have been paying what I could on the account. Called and dealt with them and ended up having to put some on a credit card. Something I said I would never do, I would just pay what I can. I literally cried through the entire phone call. But they will bring the charge back from collections and it won't hit my credit report. I use to work in credit for big fortune 500 company and read credit reports all day. I know what a collection account can do.
Brandy, I am not a cuss word person but I totally get these shirts and other items.
My breathe bracelet I bought from Etsy. It was in October and I chose the color of the band. I use to like pink but the color makes me sick now. I can't deal with pink and the pink ribbon. Maybe one day in the future, but not when I am still in the thick of it.
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Love the baskets! I have been thinking about bringing something in for the front desk staff and my 2 chemo nurses, on my last chemo....in 5 weeks from today! But didn't want to do doughnuts or cookies.
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LOL Jennifer, I did almost the exactly same thing as you did last week, including going back over my initial biopsy report. I scared myself half to death when I read the Proliferation score was 75%. And under that it say, "Associated with a relatively poor prognosis." Well, thank you very much!
Anyway, after talking to the BS, I felt tons better. And I haven't been cruising for information on the internet since. At this point, it is what it is, and I will do my best to eat right and exercise (well, starting tomorrow! It IS Fat Tuesday, after all!) to better my recurrence chances. I'm also trying to take stock of my life and making sure that I'm living my life in a way that I'd be proud of should I exit stage right in a year or two. Beyond that, it's out of my control. And as my favorite high school teacher once told me, "Darlin', there's no sense worrying about something that you can't change."
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Trees- I am having the same problem with the hot sweats. It seems to be getting worse. I wake up in a pool of sweat. Then they happen randomly throughout the day. I hope this ends after chemo!
Jennifer- love the mask! I'm so worried about getting sick since I returned to work and now I think I have a cold. No fever though. Praying it is just a cold. So much to worry about!
Love the gift ideas! Next week is #10 for me so maybe this will be a good time to bring a gift for the nurses. Thank you for the ideas.
Good luck to everyone making your surgery decisions! Like Petey said, I didn't have enough time in the beginning to really think everything out. I was so wrapped around the whole diagnosis that I followed what my surgeon advised. Sometimes I get nervous if it was the right decision but I'm good with it.
I agree Lisa-the best we can do is thank God for each day and live the best we can. Enjoy every precious moment! We are doing everything we can to kill the beast and we will be OK!!!
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I keep this screen shot in my phone from TNBC site. I haven't read it in a while...
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LisaRX & Petey: Thank you so much for the kind words and encouragement. I feel so much better today, got to work early, held my head high and did not let guilt creep into my day at all. Inside we may know that we need time to feel crummy, but it sure is nice to hear it from others that are going through the same things...and know that with the support of others "I will be okay".
Love the bracelets, and the shirt... I also liked Jennifer's phone screen saver that was nice to read too.
HAPPY VALENTINE'S DAY TO EVERYONE, HOPE TOMORROW IS FULL OF BLESSINGS.
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Lisa- I meet with my MO Friday before my Radiology appnt. I'm hoping to hear about trials then. I too am asking about nutrition trials. A friend of mine mentioned it and it sounds interesting. I need to lose some weight. Steroids has me bigger than I've ever been. I'm finally feeling more energy to exercise and to walk again. Fatigue is a real thing. Also I'm reading a great deal about nutrition and want some guidance in how to incorporate certain dietary changes. Let me know how it goes and I will update you as well.
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Happy Valentine's Day from this little chick. Little chick is what I call my current hair situation. White and fuzzy on top. More dark and fuzzy on sides and back. I started going from smooth bald to fuzzy hair a few weeks ago even though I am still getting Taxol.
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Last chemo is under my belt! Woo hoo!
eight out of.....will keep you posted on anything I learn.
Jen, I started growing hair a few weeks ago. Nioxin should arrive today! Hoping to get my lashes and brows back soon because I’m really bad at drawing them
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HAPPY VALENTINE'S DAY, OCTOBER QUEENS!
Haven't been posting a lot the last couple of weeks. I've missed responding to so much, but I've been reading along with all of you. My last 2 Taxols did a number on me and I was so tired and had major GI issues. (LOVE that comic Petey posted - so true.) Now that I'm climbing out of that it feels SO GREAT to know that there's no infusion coming up! To everyone who may be struggling with the cumulative fatigue as they reach the end, know that you'll get to the point where you're ABSOLUTELY GIDDY knowing there is no "next cycle" to bring you down again :-)
Yesterday I had my post-chemo MRI and a Mammogram with contrast. Has anyone had that kind of mammo with the IV contrast (CEDM)? The infusion of the dye was intense - not painful at all but a very wierd sensation. I am of course hoping that my tumor will be gone, but it started at over 7cm so who knows. The real important thing is that it receded away from my pectoral muscle. I won't get results until my BS appointment next week. Please everyone keep your fingers crossed for me.
HikerVA -HOORAY for your US an mammogram showing no cancer left! That's amazing. I'm so happy for you. Please don't feel guilty about calling in sick. Just because our chemo treatment is over doesn't mean we have immediately snapped back to 100%. It sucks not to have supportive co-workers. I know. Good luck hiring the best fit part timer.
DKK - I am so HAPPY that your CAT scan was good for your neck, glands and nodes. Hold on to that great feeling of good news as you enjoy Mexico with your huz.
MamaFelice - good luck getting into the proton-therapy trial at MDA. No matter what your ultimate rads plan is I hope your beautiful heart (and lungs and everything else) is protected.
Peoy and Jennifer and Lisa - your hair looks great! I can't wait to get to that stage.
LisaRx - your eyebrow story really stuck with me. I had a dream last night that I was asked to go see some muckety-much at my company but I realized half of my eyebrow was missing. I remember seeing some sealant that you can put on eyebrow make up to keep it in place — have to find it.
Jennifer - I'm sorry you are having a rough week. It gets hard toward the end, and the recovery period after last infusion. Hand in there. The financial part of this whole experience is awful. I'm sorry that you had to deal with a bill get to that point but it's great you have the energy and strength to stay on top of it and not let it slide.
Have a good week, everyone.
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Hi Agatha, It's called Model in a Bottle. I normally don't need it with Wunderbrow because it was a stain. My mistake was not wiping off the greasy remover before applying it. Good luck on the MRI. I had an MRI with dye contrast in the very beginning of my odyssey. I had no issues with the dye, but it wasn't the most comfortable procedure I've ever done because of the awkward position I was put in for 45 minutes. And then the gurney got stuck inside the machine.
Hiker, glad you're feeling better today. People often feel guilty when they take "mental health" days but stress is a real thing.
Avoiding the news today because of the Parkland HS shooting. I just cannot watch these reports anymore because I get so stressed out and sad. The day I got my port installed I woke up to news of the Las Vegas shooting. What is this world coming to?
Happy Valentine's Day to everyone and happy Ash Wednesday for those who share that faith, too. I didn't fast today because my RBC is still in the 3's but I refuse to feel guilty about it. I know God understands.
2 more weeks til my boobs and any remnants of cancer in them go byebye!
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