Starting Chemo May 2019
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I love hearing good news! Sounds like you all are having a positive day. April, that picture is darling. I'll be 12 weeks PFC on Friday (hard to believe) and I don't have as much hair as you. Mine looks the same color though, even though I was blonde before. I do like the freeing feeling of going around without a wig.
I started my radiation on Monday, so after today I'll be 3 down, 30 to go. I'm already feeling a little stinging, but that might be my imagination.
Have a wonderful Thanksgiving, and if you're on the road, be careful. I enjoy reading everyone's check-in, good or bad.
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jrominger, thanks for the offer, but I found nice youtube videos now. I am doing this one in the morning:
https://www.mskcc.org/videos/exercises-after-breas...
and this one in the evening from now on.
I just did the second one and I have full range of motion, even though my right side feels tighter than the left. But the stretches don't hurt, it actually feels great.
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Mightlybird, thank you for the info!! We downloaded it and will give it a try!!
4” of snow here in Flagstaff with 8” more predicted. 30” on the San Francisco Peaks. Going to be a good ski season!! We are 8 miles from the lifts if you need a place to stay!!!
Blessings
Ja
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so pretty Jay! Still raining down here. The pool might just overflow!
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Hello May friends, how is everybody feeling post surgery? Is movement coming back to normal?
I am 2 weeks and 2 days out from my UMX. My exercises are going well, but skin is still sensitive and hard. Next to the armpit it is most noticeable. It is getting better but slowly. It does not affect my range of motion, it just still feels very tight. I have no tightness across my chest horizontally, just when I stretch my arms up. Also my scar is tiny and I can feel no scar tissue at all. There is much more scar tissue where my port was. So overall, I am pleased, but it seems like as if progress is slow right now. But I did also read somewhere that recovery is not necessarily linear, meaning sometimes progress seems to stall a bit.
I just wanted to share this website as I found these instructions on self massaging the scar interesting. Scroll down the page.
https://sunnybrook.ca/content/?page=mastectomy-pro...
I also took a screen shot. It says to start with this only 4-6 weeks after surgery, so I will wait a bit. The area is anyway pretty sensitive still.
Currently I am doing all my house chores and pretty much all stable chores, apart from mucking stalls. I also refrain from raking leaves or doing anything repetitive.
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Hi mightlybird!! Good to hear from you. It sounds as if things are going well for you. Natalie is doing very well. Does her stretching exercises religiously. Definitely some tightness and more pain in the armpit area as well. Scars are healing nicely. Her energy is really improving. She will be 3 weeks post DMX tomorrow. She is planning on hitting the gym for the first time after Thanksgiving. She has been going to an odd little man for acupuncture and nerve stimulation for her neuropathy. The neuropathy seems to be getting better!! Not sure if it is the acupuncture, my foot massages or time but we are grateful for the improvement!!
HAPPY THANKSGIVING to everyone. I would love to have an update from everyone. Praying and hoping everyone is doing well with their treatments and recoveries!!
We do see a lot of TINY eyelashes coming back!!
Blessings,
Jay
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Mightly, thanks for posting the massage techniques. I started massage last week (my PS said to start 3 weeks post-op), but I didn't really know what I was doing. Ahh, I love the smell of cocoa butter in the morning. LOL Not really. Jay, glad to hear Nat is doing so well. Tiny lashes are a miracle! And hooray on the dissipating neuropathy. April- I love your pic! Your hair growth is awesome. I'm 8 weeks PFC and still have salt-n-pepper peach fuzz. At least it totally covers my head now, as opposed to looking like I had male pattern baldness! BAMR- how's radiation going?
I had my radiation consult last week. I had a long talk with the doctor about the whys and wherefores. Basically, he told me that they are throwing the kitchen sink at my "cancer." I have that in quotes, because he admitted to me that statistically speaking, all my cancer was most likely removed surgically. As such, I've decided that I am not doing radiation. I will instead take the tamoxifen and support recurrence prevention through diet and other integrative methods.
I also started physical therapy last week. I've been having a hard time raising my left arm, with pains shooting either across my chest, through my armpit, or down my arm. The PT doc said my skin is "sticking" to nerves as a result of the surgery. Today I will get dry needled to hopefully get the muscle under my arm to relax some so I can get full range of motion restored.
Happy Thanksgiving, May friends! Through all the trials and tribulations, we have much to be thankful for. I, for one, am very thankful that I found such a caring cohort to support me throughout the last year. Your advice and concern are much appreciated.
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Palmetto... I'm delighted to hear you are opting out of radiation (because I like company in being a rebel). I'm feeling if it is recommended I will decline it as well. I'll know more after my consult, but I'm just not ok "throwing the kitchen sink" at me just bc there's no concrete documentation as to how to treat bilateral BC. The chemo already felt like overkill, I've had the double mastectomy, my tumors are very small and my nodes are neg. Enough is enough you know? I've been on my AI for about 6 weeks now.
recovery.. I'm 9 day post-op. I was doing fabulous until I overdid it one day (picked up a box that looked light but was probably 20 pounds), developed a hematoma at the site of my R drain, it's large and painful. I am doing absolutely nothing now. sitting on the couch, small walks. I've also started to get a lot of swelling in my upper chest and it's just making me tender and irritable. I go back to PS tomorrow and should have the drains pulled then. At least the L side, it's hardly putting anything out at this point. Range of motion is pretty good and I'm sleeping fine.
Been on the phone for a few hours this morning sorting out insurance claims, it's all settled but it's so time consuming.
What are everyone's plans for Thanksgiving? We have been invited to a friends home and I just need to bring pumpkin pie. My daughter gets home from college tonight. So I'll have everyone home for a nice chunk of time.
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Palmetto, I am sure you have thoroughly examined your options. You made a very brave decision, and I admire you for it. I am sure only someone who made that decision can really truly know how hard it was. I hope it turns out wonderfully for you! It is so hard that we only have statistics guiding our decisions, plus most of those are based on data that are old and no longer relevant for our modern chemo's and diagnostics.
April, so sorry to hear about your hematoma. I know how easy it is to misjudge certain situations. I got my drains out after 5 days and on day 7 I was so happy that I could go shopping that I lifted my heavy shopping basket in the car without even thinking twice that I should not be lifting such heavy things. Luckily I have one good arm still and I must have intuitively put most of the weight on that one, so nothing happened. But when I came home, I asked hubby to carry all shoppings to the house.
Good luck with your drains coming out. You will feel sooo much better once that happened!
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April and Palmetto great to hear from you two. I couldn’t agree more on your decisions. I believe our MO was right on when I asked about adding another type of chemo and a specific prescription afterwards and she said no to both immediately due to toxicity and extremely little data that it would do any good. She also said no need for rads as it would be overkill in Natalie’s case. She said radiation is excellent if needed but if not, don’t do it as it can have harsh side effects. So we listened. We also feel the chemo was a lot!! Palmetto we are also doing a lot of integrated methods, will continue with tons of exercise as we can and a more Mediterranean diet.
April so sorry to hear of the hematoma. It’s a fine line right now on not doing too much or too little. Geez. Praying that it goes away soon! Nat has pain running down her left arm. She thinks it’s just the nerves and stretching. Being 3 weeks out we are gradually adding more. We are heading to Rio Rancho, NM to our sons. So excited. First trip since BC!! 20” predicted for Flagstaff Thursday and Friday 😩
HAPPY THANKSGIVING!
Jay
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Both my drains got pulled yesterday and I feel so much better. The hematoma is slowly resolving, the drain was pushing against it, so I am definitely feeling much relief, still sore though. My insurance covers bras from the specialty store so we stopped there and picked up 1 more compression bra and one lighter structure sleep one. The lady told me to come back in a few weeks, since I have coverage I can pick up a few more for day to day normal use. they had some really pretty ones so I am pretty excited about that.
Not going to lie, I was getting depressed with that pain, was crying a lot (which is so unlike me). After the bra shopping another lady had arrived for her bra fitting, her surgery is today. We talked a lot and she was so relieved to see me out and about a week post op, it really helped my spirits to be helpful to someone else.
Oh! and i got a little haircut yesterday! I went into my salon to ask about the hair on my neck (I was looking sorta unkempt back there), so she shaved off that and trimmed up around my ears. It took all of 5 min but I was happy I had enough hair to warrant a little touch up. She said we'll keep doing that till the top gets longer then I can work on growing it out into a style again. For now, mullet prevention
Safe travels to all that are heading anywhere and of course Happy Thanksgiving to everyone!
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May family, wishing you all a very happy Thanksgiving!
Enjoy the great day with family, friends and... the turkey
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Hello May friends, I, too, would like to wish everyone a Happy Thanksgiving. There really is so much to be thankful for in light of what we have been through this past year. My prayers are said daily for all of you. Wishing everyone a happy holiday season as well. Pat💞
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UpstateNYer, Lacombattante, April thank you for the Thanksgiving wishes. We are so blessed to be in Albuquerque with our son and his family!! April so pleased that your drains are out! What a pain those were!!! UpstateNYer you are so correct, a tough year but so much to be grateful for. Blessings to each and everyone in our little group!!
Jay
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Happy belated Thanksgiving from me! We were thankful for life and what we have come through. Still some ways to go, but we will get there!
I went the first time without hat, and people loved my very short hair. This was the best thing about yesterday, I am getting my confidence up to go out and be normal again. My fake boob bra is not yet perfect. Given it was a 5 minute job to stuff it, it is hardly surprising. I get my prostetic fiting next week. But nobody noticed anything anyway.
Hope we all enjoy the rest of this holiday.
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My friend wanderweg from my August '18 chemo group referred to her first attempts at hatless living as "Sineading around" -- which is really a great verb... I am thankful that all my May chemo friends are making their way out of the treatment maze, and that your "bounce back" this time will be one long return to feeling normal and good. We've all been though an enormous ordeal-- but it is a source of strength and compassion and gratitude, in the long run.
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Mightlybird. Good to hear from Natalie’s twin! Nat’s hair is thin in one spot. Makes her look like her late father 🤪. Nat and our daughter will also go do fitting soon.
Santabarbarian, great to hear from you. Sineading is the perfect verb! Haha. Your last sentence is absolutely true and exactly how we feel!!
12” of snow last night and 12” more expected today 😫. I think Hawaii is in our future.
J
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Hello friends!
Progress report: I think I passed the turning point. It is 3 weeks and 2 days today since UMX, and as of 3 days ago, I feel really well. I have full range of motion and no pain, and the inflamed feeling in my armpit and shoulder has disappeared. The skin is still a little sensitive and yes, the right side is tighter than the left, but I honesty hardly notice it at all in my normal activities. I can still clearly feel it when I stretch though. I can do my full pilates routine, including all planks and all stretches. I am not doing any heavy lifting yet, so can't say how that would be. I must say, progress was fairly sudden. By 2.5-3 weeks I got a bit desperate that nothing much seemed to improve and especially by the evening, I felt really inflamed still. But then, boom, things made huge advances all of a sudden. The most amazing thing for me is, that my shoulder is sooooo much better. I have done my mastectomy exercises (from those youtube clips) 2-3 times a day, and also added new shoulder exercises. My shoulder feels better than it has in years. Who knows, the secret may be to really do the shoulder exercises several times daily and not only just in a sloppy way on the go here and there as I used to. I now stand in front of the mirror, with just a very tight undershirt on, so that I can really see my shoulders moving. I ensure that they are moving at the same pace, at the same height etc. It is amazing to see just how asymmetrical my shoulders are from decades of heavy manual work mostly right handed, and horse-related injuries to my right arm. Maybe I needed a mastectomy, to really give my right shoulder a break and allow it heal itself. In the last weeks I have done many modifications to my stable routine, which eliminated the need to overwork my right shoulder substantially. Some things I had to give up, like trimming the hooves of my horses, which I used to love doing and have done for the past 10 years. It is just too much on my body, so I sadly have to give up that part to a professional. For some things, men are just more suitable than women ;-)!
How is everybody else doing? I hope things progress nicely. I am an outlier here with just a UMX, most of you probably have to double the healing time, with BMX. There is a lot of injury in the body, and unfortunately, it just needs time too do its thing.0 -
Mightlybird01- So happy to hear that you've overcome the shoulder stiffness and beginning to achieve a full range of motion. Those exercises must be helping you for sure as well as the modifications to your stable duties. Keep up the good work! I only had lumpectomy, but had some stiffness and pain in my opposite shoulder that began after my third chemo. That has improved with stretching exercises and weight lifting as well. Everything takes time.
Hope everyone had a great Thanksgiving. You are all so special. I am truly thankful for the friends I have made in our group.
Jrom- Hope you're not too buried under all that snow. Yes, Hawaii would be a very nice escape.
Santabarbarian- I always welcome your words of wisdom and encouragement. You have helped so many of us. 👍
Pat💞
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UpstateNY, interesting to hear that you had shoulder pain after the third chemo. I am convinced that mine flared up because of chemo too. I had it before mastectomy, but after chemo. It is probably some sort of neuropathy.
Would you mind sharing what sort of exercises you do with the weights? I just ordered myself dumbbells, 1, 3, 5#. I have not devised an exercise routine with those yet, but I think I am ready to progress. I guess I start by doing my regular exercises holding the 1# dumbbells, and see how that goes. But if you have a specific set of exercises that helped with your shoulder, I would be interested.
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Mightlybird01- Both my MO and primary doctor felt that my shoulder issue had nothing to do with chemo. I highly disagreed, as I never had issues with the shoulder until after 3rd chemo. Too much of a coincidence.
I don't have a specific weight regimen for the shoulder. I have been working out with weights to videos of 'Bodyfit by Amy' on You Tube on my ROKU TV. She has several low impact cardio and work outs with weights videos. They are very effective and easy to fit in to a busy schedule, like yours😳
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mightly... thank you so much. I am at 2 weeks and while I feel ok and can do basics, the inflammation and bruised feeling is driving me nuts. And I am feeling like, “this is taking much longer than I thought”. So you gave me hope that perhaps this is my last week of feeling like nothing is changing. Delighted to hear you are back to your Pilates and the shoulder pain is so much better.
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hello Pat! Nice to hear from you as well.
I get so excited when I get notifications that there are new postings on this thread. You all mean so much to me
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April0315-The feeling is mutual😊 . Hoping the inflammation and bruising eases up for you soon.
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Thank you UpsateNY. Sometimes oncologists don't really know what they are talking about ;-). I have not even told mine about my flare up of shoulder pain after chemo. I am sure he would have reacted the same as yours.
April, hang in there. Feeling better is just around the corner!
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Hi everyone I agree I’m always happy to see and read new posts. Mighylbird and April, Natalie has what we found out to be “cording” in her left arm. It came on 3 weeks after surgery. She has done all of her stretching religiously but it still came on. Quite painful. She will continue to do her stretching if not better in a week we will see a PT. Otherwise doing very well. Lot’s of white hair growth, only tiny areas of thin patches and tons of small eyelashes. Which she is very excited about. We are eating well (Mediterranean) and she is planning to head back to the gym soon. We are doing some small trips and hanging out with friends and family. Nat has had small tastes of beer and a BnR egg nog Ice cream cone as some splurges 😜. Neuropathy in one foot seems better so hopefully that and the cording will improve gradually. Hoping April’s inflammation and bruising rapidly disappears!!
Pat so wonderful to hear from you. Keep up the workouts. I love it!!
Blessings to one and all
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jrominger, so sorry to hear about Nat's cording and pain. Luckily, this does seem to be easily treatable, so just one more little bump along the road! Hope she gets relieve soon.
I have had tastes of beer too, but my weakness is sweets and being from Germany, and since Aldi has appeared in the USA, I can get all the gingerbreads and christmas goodies we have in Germany, and that is a real challenge for me! I bough 3 big packets of chocolate covered ginger breads (my husband gave me the look!) but I brought them all up in a place that is hard to get to, and I am only eating ONE per day!! So far I have managed :-)!
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Good morning!
Hope Nat's cording resolves quickly. I'm feeling a little better, seems like mornings are really good then by the end of the day I just feel swollen and irritable. R side hurts more than the left, but my ROM is good, I'm working on stretching thinking maybe that's some of my pain, just tight muscles from not using them much? The incisions are healing well and the implants look pretty much like my previous self so I'm happy with the results,
Anyway, I see both surgeons today, and tomorrow the radiation consult. My insurance company has an oncology nurse navigator and I've been on the phone with her quite a bit. She said I am eligible for coverage for a second opinion and I can either go to Mayo locally or some Center of Excellence in California and they cover lodging as well if I decide to go there. I'll see what the RO says tomorrow then decide where and if I need a second opinion. Probably should have done this before chemo but I can't go back and change things.
I'd really like to get the Christmas lights up today. My husband has a cold and it's a "man cold" so he's not much help right now...LOL love him to pieces but, when he's a little sick, wow... the drama!
Anyone doing any scar treatments?
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Mightlybird, I took my mother on a German Christmas market tour in 2008. The goodies are spectacular!! We will call a PT locally to see about some therapy on the cording
April, your comments on your husband’s cold made me laugh my butt off. Us men!! I fought in the ring forever, your husband is a Ironman stud, yet when we get sick we turn 8 months old lol. The Mayo consult would sure be a lot closer...ya? Good luck with all of that.
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