Starting Chemo May 2019
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Hi jrominger! How's it going? Losing my eyebrows was hard for me. Being bald didn't bother me. Go figure. I think it took a couple of months for my brows and lashes to return. They're still filling in.
I went out for the first time in months last night. I went with my husband and hung out while he played in a pool tournament. It was nice to get out and have some fun with friends! Before we left, I told my oldest daughter and her boyfriend that I was excited to get out, that it had been months. In all sincerity, he said "didn't you just get back from the grocery store?". I laughed and said that didn't count.
I drove for the first time since my BMX yesterday, and I drove a lot. It was wonderful! The things I take for granted.
April0315, I'm thinking about you.
I hope everyone has a good day.
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The low point of my hair loss had one very funny aspect-- I could do a comb over.... I looked *identical* to my (bald-ish) dad...
The lashes and brows (or their absence) really affect how your face looks! Somehow you look puffier? They are needed for accent marks! I'd say my brows were about 3-4 months PFC, to fill in all the way. I used some pencils in the meantime. (At halloween I went to a party as Freida Kahlo and drew in some honking eyebrows!)
Pace yourselves, sisters! It takes a while for our blood values to re-normalize, and it takes time for stamina to bounce all the way back. Rads is another delay to the full bounce-back, but luckily a very brief one. But be assured, YOU WILL BOUNCE BACK! -- and when it happens you will feel so heavenly.... just to feel normal!
Remember that intense exercise is paradoxically what will make you LESS tired in the long run. I know some on this thread (looking at you Paloma!) are wonderful exercisers and this is so, so good for recovering.
I have a Sunday routine doing a huge set of stairs (about 12 flights down to the beach from a bluff, x 5) with a friend. During my treatment we kept it up... she would rest every flight with me, as I gasped for air... but we kept doing it. Me in my chemo cap. One of those Sundays, we were discussing chemo as we walked up the steps and a young man stopped and introduced himself, said he'd overheard our conversation... turns out he was the new-hire Doc at my cancer center. He was very impressed to see a bald lady on the stairs! I gave him an earful about my integrative practices and told him he could be the "next wave" at the center, and could help them move into more integrative care.
I am back to full energy, and just in the nick of time. My 86 year old Mom broke her leg two weeks ago! I have had to drive from So Cal to NorCal at least 4 times so far to help my 92 year old Dad. Upon the first trip, I cleaned their house for 3 straight days with my sis. My mom had been 'overseeing' the house and boy had she been doing a horrible job! She will return from the rehab thinking she left an immaculate house-- HAH.
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Hi all, Sorry to not be posting as much. Been very busy, but all of you are always fondly in my heart and prayers.
April- Praying surgery went well. Keep us posted.
Mightlybird01& Nat- glad that you are both continuing to recover nicely. I also lost brows and lashes weeks past PFC. They grew back fine. Prayers for clean path result.
Neeli- Sending warm hugs and prayers. So sorry that you are facing more chemo. That really stinks. We are here for you.
Palmetto-So sorry that you lost your beloved pet. Sending my heartfelt sympathy to you. ((Hugs))
BAMR-Hope your radiation txts. went ok after that first mishap. Yes, they should be especially attentive to you now and should treat you royally anyway.
Hi as well to Happyanyway, Lacombattant, Mountainmia, Santabarbarian, and Britt
Hope everyone is having a nice weekend. Very cold here in Rochester, NY. I think It is 12 degrees outside now. Brrrrrrr.
Love to all of my May chemo friends, Pat
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surgery went well, was able to do direct to implant reconstruction, and opted to NOT doing nipple sparing. Spent last night in the hospital. I’ll be leaving in the next hour. Pain is minimal, taking Tylenol every 4 hours. Lots of walking the halls, very little sleep. I have 2 drains. Path results should be in by Tues and BS will call me when they arrive.
Hope everyone is doing well!
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Happyanyway, Natalie is doing really well today. The last 2 days she was really sore and tired. She misses her dad and took a day to mourn. They were doing chemo together so it's tough but she is her normal happy self today. She is doing her chest exercises as we speak, then we are going for long walk that may end up at a beer pub for me
She might even have a small taste. She has taken a lot of the steri strips off so that seems to make her feel better. The cuts look really really good. Every day seems to get better. Santabarbarian is correct we all will eventually be back somewhere close to where we were just better and different. Natalie's bloodwork really improved but her liver enzymes were up a tad. We think it is her body getting rid of the chemo, thus the eyelashes falling out. Like Santabarbarian said the blood work, neuropathy etc. will all improve over time. I just got in the wrong line when God was passing out patients
Mightlybird any news from the BS re path? Hoping you are healing well and we are praying for great news.
April, thanks for letting us know how things are going. Sounds like they did a lot of great stuff and only 2 drains! You should get rid of those aliens in a week or so! Glad only Tylenol was needed. Enjoy that wonderful weather down there. Snow predicted up here tue-friday. UpstateNYer can identify with snow and cold.
Great to hear from UpstateNYer, Santabarbarian, so sorry about your mom's leg!!! The encouragement and insight is very appreciated from both of you.
Thinking and praying for everyone in this May group.
I kind of feel like a 8 yr old on Christmas morning not having to go back to the cancer center for 3 months!
Jay
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Hello April, welcome to the other side! I could hardly sleep the night after surgery either. Somehow I was totally fired up. But the next 4 days I was really tired, or not even so tired but more exhausted. I was just as out of breath as when on the AC chemo, when I did even just try and come up the steps. I think I must have been anemic again, from blood loss or something. It felt like it. I read somewhere on here that for every h of anesthesia, it takes 1 day to recover. That was pretty much exactly true for me. I was 4h under and needed 4 days of pretty much only rest. After that, I was very quickly back to normal. I hope your recovery goes smoothly. Definitely take it easy the first week.
I still don't have my report. Pain is still very bearable, it is mainly the skin next to my armpit that is swollen. I don't think it is anything to worry about, but will ask my BS on Tuesday. I am back to do my usual house work, baked bread and cookies today, and do the normal cooking. Though I am not doing any vacuuming or anything that requires repetitive movements with my right arm. Have not started any exercises for arm and shoulder either, but at least got back to my 10,000 steps today. The last week, I hardly had more than 3,000 per day. Feeding the horses is also already possible, though requires a bit of extra time, as I mainly use my left arm, just being overly cautious. But for one week post surgery, I am very happy with the progress.
On the eye brows front, yes, I also lost all of mine after chemo ended. Actually, I pulled the last remaining ones out. IT looked ridiculous to have only a few long dark eye brows. I had a few light ones growing in already, but they too were very weak and I pulled them all out without any force whatsoever. Nothing solid has grown in yet. But somehow, because winter has set in and I wear hat and glasses I don't really notice this too much.
HappyAnyway, so glad you had fun going out with your hubby! I can't wait to do the same!!
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Jrominger, good for you to walk to the beer pub. Hope Nat is taking a sip. I do that with hubbies beer at night :-)! And maybe, if path report is good on Tuesday, will drink my first whole beer since treatment started..
Hope Nat's exercises go well. I am curious to see what I will be instructed to do next Tuesday.
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P.S. Hello from the 3 Minis of the 4 horses...
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Re a swollen armpit - mine was a "seroma" which is fluid-filled... not serious but if it's annoying it can be drained. They usually resolve on their own.
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Santabarbarian, sorry to hear that your mom broke her leg. That's rough. Looks like longevity runs in your family. Wishing you many healthy years. So sweet of you and your sis to clean for your parents.
Hi UpstateNYer! Busy sounds good to me, closer to living as before. Stay warm! It's after 7pm here and 48. You can give me a hard time in August, when it's ridiculously hot and humid here.
April0315, sounds like you are moving right along!
Jrominger, I'm sure Nat is having a hard time with the passing of her dad. Sending love and prayers.
Mightlybird01, all three of my girls love your minis! Little bit wants to ride one. I'll send her right over! 😁
Healing vibes to all.
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3 girls and three Minis is perfect. Send them right over! I love teaching little girls!
Santabarabrian, thanks, yes it is a seroma, I agree. It'll take a few weeks most likely to totally resolve. My seroma after the excitional biopsy took at least 4 weeks I think to resolve.
Happy Sunday and good healing everyone.
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A bit of good news from me today- my eyebrows are back!
My lashes are growing, and my hair has filled in on my head! Just in time for winter LOL. I had an appointment with physical therapy today. I’ve been having a lot of underarm/chest pain if I move in certain ways. The PT has already helped. Sure, I wanted to strangle the therapist when he was grinding my scar tissue down, but I feel so much better tonight!
Thinking of all of you fondly. Hope all is well
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Palmetto.. my eyebrows and lashes are back as well. I can't stop touching my lashes. So happy. I'm glad PT is going well and you are out and about doing PT and taking care of yourself.
Mightlybird, you sound good! and those minis,,, so sweet.
I go to the PS office today to remove the wrap and get that compression bra put on.Drains are slowing down but not enough to pull them, still about 100 per day each. Not much going on here, just resting. I still feel pretty good. Amazed at how heavy this surgery was weighing on me, now that it's not, I have fully realized how much it was weighing me down. My outlook seems much brighter, so much relief that it's done.
My path report should be in sometime this week. Then on the next step, whatever that is.
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I can't believe your guy's eye brows are back!! How long did it take for them to grow? I.e. when did you first see something is actually growing? I still have NOTHING at all.
Palmetto so glad to hear PT was good. I will request an appointment too. I don't have any pains ATM but because of my pre-existing shoulder condition, I want to get a series of exercises that will prevent further problems. I still don't have a path report, but will surely get it today. Anxiety has been pretty bad yesterday.
April, very good you are resting and feeling good :-)!
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mightly... they sprouted last week or so, so about 7-8 weeks PFC. lashes are still short but I can wear mascara and they look normal. Brows are just about back to normal, the tail is still a little thin.
I went for a short walk yesterday and sent this pic to my mom.
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MB I hope your path results are clear and simple. (And of course good but whatever they are I know you’ll forge ahead with strength)
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April, Palmetto. Great to hear from you. You give Natalie hope as well for some eyelashes!! She lost all of them 2 weeks ago!! She is 6 weeks pfc today and 2 weeks post surgery. She kind of over did it so has been a tad more careful. She does her PT exercises every day and her range of motion is doing well. The stretches hurt her chest but in a good way.
April beautiful photo. Thank you for sharing. We off to Red Rock crossing in Sedona for a short hike and picnic.
Keep up the PT hair growing!!
Praying for great pathology reports!!
J
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April 0315,
You look fabulous! I finished up AC 2 weeks ago and slowly coming out of the fog. I’m not scheduled for surgery until mid December. I’m already looking to see if I have any lashes, eye brows or hair...I’m anxious to get my hair back. You are my inspiration! Thanks for posting the picture😊.
Kate
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Hi All,
I am almost 2 months post chemo and my hair has grown about 1/4th of an inch. Apart from all the worries i cant believe things like hair growing on my head can bring happiness. I had my first PT yesterday and it did help. The tightness in the upper arm is on and off. Have to mentally prepare myself for the radiation chapter.
Sending in positive vibes to you all.
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Hello friends. Good to hear from you all.
I saw my MO this afternoon. Since my tumor was reduced by 90%, but I didn't achieve a complete response, I start Xeloda next week. I'll take it for 5 months with radiation to follow. Looks like reconstruction won't be for an entire year now. I initially felt disappointed and sad, but will do what was recommended.
I will have my expanders filled for the first time tomorrow. I'll let you know how it goes.
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jay, red rock crossing is my favorite. It’s where I take visitors to hike when they come. Glad Nat is doing well with ROM, and hope she eases up a little and no more over doing it! I know it’s hard though.
HappyAnyway... I’m sorry you’ll need more treatments and more time with TE before reconstruction. It does feel like the journey goes on and on doesn’t it? But nothing else to do but keep plugging along. Best of luck with the fills.
Neeli... I’m 90% sure I’ll be joining you on the radiation journey. We have come this far though. It’s going to be ok.
Katiekins.. I hoped the pic would help inspire someone. It’s so hard to know what we might look like along the way.
I had my PS appointment, dressings removed and I got a good look at myself. My implants are in already so aside from no nipples it wasn’t too awful. Drains are in for another week.
Still sleeping a lot. I’m day 4 post op
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Hello May friends,
just come back from the hospital and there is good news. There was no evidence for any cancer in my breast. They just found the excitional biopsy scar. I am so relieved and for the first time in this whole cancer journey I cried. I cried of happiness, but also sadness thinking of you guys, whose journey is not finished. From now on, I will throw all my weight behind you guys!! If each and everyone of you who is still in treatment needs anything, I will come and help, honestly, this is a warning, I will travel, you just have to say the word. I will root for all of you, you will get this done!!
The last thing I will do is see my MO on Friday, to update him on the surgery. I had my chemo done in the small local hospital close to home (who also did the original excitional biopsy), and the mastectomy at U of C (~50 minutes from home). I don't need to do radiation or anything else at this point. My next mammogram is scheduled for my healthy breast in 6 months. That's it.
HappyAnyway, I don't understand why you need to do radiation, just because you did not have a complete response. 90% sounds amazing. I am sure you had wide margins at the end of mastectomy? Or did they find cancer in your lymph nodes?
Lots of love to all May warriors!
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mightly!!! What amazing news!! I am so happy for you!!!!!
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mightlybird, it's the TNBC. They are very conservative to 'over'-treat TNBC. Even if I had had a Mx, I would have had to do rads due to my original lymphatic involvement. Despite having a pCR. (BTW I am SO happy for you, that you had such a great response to chemo! YAY!)
Happy Anyway, Paloma, and anyone else who is now looking at more treatment: I am sure it's disappointing to have to go through more SEs, and more medical BS, when you were pacing yourself for a finish line this year, and hoping to be "done." But I have confidence in all of you, and I know the recommended followup makes it much more likely never to be bothered again in the future. Xeloda is a very good treatment - I have a good friend on it. It's an oral pill so no infusions. Once my friend's dose was tinkered with a bit, she has found it pretty tolerable. She is living normally. She is a singer and has been performing, etc, while taking it. No hair loss. If it agrees with you, it's much less horrid than infusion chemo.
There are a lot of us who are here to support you and be by your side until you cross the finish line. You are very strong women-- it is wise to throw the full arsenal at this beastly disease and not stint.
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Mightleybird. What wonderful news!!!!! I have been praying. You and Natalie seem to be twins on this journey. Again it is surreal to all of sudden be done. A bit scary!
April please let us know when you get your path report. Expecting great things. Red Rock Crossing was wonderful Hardly anyone there. In high school everyone would meet there and try and drive there vehicles across. Glad they don’t do that anymore!
Happyanyway I also have a high school friend who was TNBC 14 yrs ago. She did not achieve a full cPR and is doing great. She also did the xeloda and has had no issues!! 90% is huge and now it’s gone. Good things are coming your way.
Neeli, 1/4” of hair not bad!! Keep us informed on the rads. It will do wonders!
Nat is feeling better every day. She has a little swelling along her left ribs. I’m sure from the DMX and now stretching a lot. We’ll keep an eye on it. They said it is common and easy to drain but hoping her body will take care of it.
Heading to NM for Thanksgiving to visit our son and his family!! First trip since this BC journey began. So excited
Blessings to everyone.
Jay
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I got a message from my BS last night. I don’t know how I missed the call, but NO CANCER CELLS noted! She told me to make an appointment for follow up with her for after Thanksgiving. I “think” this means no radiation, but I’ll call the office today to make sure. I’ve learned not to assume anything. But for now, I’m cautiously optimistic.
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wonderful news April! I keep my fingers crossed for no radiation!! BTW, your hair looks amazing. I am exactly 6 weeks PFC and I have nothing like you on my head, and not a sign of eye brow. But I don't care ATM.
Jrominger, yes, it sure feels like Nat and I are twins in this journey. It is good to have partners in crime :-). I hope the swelling subsides. I also have plenty of little swellings and my BS did not worry about them at all yesterday. She said they will resolve with time. I must say from my life long horse ownership and having seen plenty of kicks to the major muscle groups and large seromas, I know that these can take quite a long time to resolve. I never had them drained on my horses (risk of infection as horses roll in the mud and you cant put bandages in these areas) and they always resolved on their own. Hate to compare us to a horse, though we are all mammals :-)!
My BS still did not recommend any specific exercises. I asked her and the resident Dr. 2 times. She just said that I should slowly go back to what I did before. I guess she trusts I know my body best. She did say not to do heavy lifting/stall mucking for at least 3 more weeks. This is all the instructions I have. I will look up those arm, chest and shoulder exercises and the internet and see how I can incorporate some of them in my Pilates routines, which I will slowly start up again. She also wants me to keep that big plaster on my scar for another 10 days. Then I can take it off my myself.
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April, AWESOME NEWS!!! Praise God! Now let's get the word you won't need rads!!!!
Mightelybird, Nat's swelling is already down! We'll just watch it. I can give you Nat's stretches if you are interested. They came from the cancer center's occupational therapist. Pretty simple stuff to make sure her range of motion is there when she is completely healed.
Let's grow some hair!!!!
Jay
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Congrats mightlybird01 and April0315 for your path results! I'm pleased for you!
Santabarbarian, thank you for sharing. By the way, when I adress my May buddies, you're included.
Jrominger, I appreciate your positive TNBC stories. I'm sure Nat and you will have a wonderful time in NM!
I saw my PS this morning. He asked me to guess who he saw. He had his board exam in Arizona last week. My PS from Vanderbilt is one of the docs that administered the exam. They were on the same flight home. He was excited. It's obvious that he looks up to the Vanderbilt doc. I'm in good hands.
The fill went well. I don't usually get nervous over medical procedures, but was a bit this morning. The air was removed from the TE with a machine. Then the nurse filled the TE with fluid. That was it! I go back next week.
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Happy I'm glad the fill went without issue.
Jay, glad Nat continues to be on the mend.
I'm not going to get any news about radiation anytime soon. BS still wants me to have a consult, so that's set up for Dec 4th. I have discussed with my husband that if she says I need it I will get a second opinion.
Until then, I'll just keep healing and enjoying life!
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