Starting Chemo March 2015

Italychick

no worries, we have a lot to remember and a lot on our minds!

Does anybody else rub the area where the tumor was removed? I have scar tissue there, so I don't know if I could even detect anything new. But I still check, looking for hard pea like tissue. Gonna ask MO about how to self monitor going forward.

KBeee

Whitney, i've read part of the blog; will keep reading. You are a great writer !

Other topics.........

Oopherectomy was one of the easiest surgeries i have had. I was cleared back to work in a few days. There is a hyster sisters website with lots of info. Don't have ability to link to it right now.

On stats and recurrence ... I have always thought it's either zero percent of 100%. I was very, very, very low risk if you look at my stats first time around and how we treated it. Yet here I found myself 14 months later, I know people who were stage 3 triple negative who are 20+ years out.... And I am very, very happy to see that. It's a great big crap shoot.

wpmoon

Thank you ladies!

I remember the first time I asked my doctor about survival rate, he just simply said, "You're going to live for a long time." I didn't like that answer then, but looking back now, the number doesn't do much good, as we've all pointed out. I think maybe we seek it out to have something to grasp onto in the midst of end of treatment anxiety. It's a beacon of hope for the next X amount of years of our life. But it's still not a guarantee.

My radiation buddy, Judy, finished her treatment yesterday, so the waiting room was lonely today. But only 5 more to go!

Theresa - are you having any hot flashes with Herceptin? I'm DRENCHED every night!

eheinrich

My first MO told me vague recurrence rates and said - but for each individual it's 0% or 100%. : /

Italychick

Whitney, yes, I'm having hot flashes. But I had them before since I started menopause three years ago, so it's hard for me to differentiate between the two hot flashes. The terrible part is when it happens during the day since I have no hair it runs down into my eyes and burns lol.

Very introspective and poignant moment tonight. Granddaughter Addisons first birthday party, and my ex husband came here from Illinois. He didn't know until recently about my diagnosis. He went on about how wonderful I am and how much I mean to him and started crying. At that moment I realized that, while maybe positive attitude doesn't change outcome, it does change how I live. Never once have I looked at breast cancer on the negative side. To me, it has always been something to get through and deal with and then get on with my life, and not worry about whether it recurs later or whatever. That is something I can't control. I guess maybe that's why I haven't cried one single time since diagnosis. Right now, in my mind, I feel like I got a reset and now have the same risk as any other woman does.

Although I did come close to crying over that damn cookie. But Katy fixed that in a way I will never forget. I keep a cookie in the freezer and I look at it all the time.

Love my sisters!

SueH58

Theresa, you are one amazing woman. And I will never forget that cookie story!

jumbledbamboo

Thanks for the replies. Seems like you all know each other so well.I did see I am not the only one with insane hot flashes from herceptin. Today I had the worst one yet were I did start dripping sweat. I have been battling a migraine so I just thought it was worse from that.

shaz101

Some very interesting discussions. Thanks specialk for the links.

Congratulations Whitney.

Jumbledbamboo I'm so sorry you're having a migraine. Hugs to you.

A big thankyou to katy! I received an amazing gardening book! It's perfect for me. It's a well written easy to read book about gardening in south australia. Now I have no excuse for having a weedy mess 😀

Trvler

I remember the cookie well. I admire your attitude, Theresa. I am not so optimistic but once this is over, I plan to do some stuff.

shaz101

You're doing really well Allison. Be proud of yourself. This is not easy!

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Lovemylab

Hi everyone

Whitney I was so impressed by your blog! So well written!

I had an hour of testing by speech pathologist for my chemo brain. He says I am below average on memory tests but thinks I will improve with exercises. We didn't get to the exercises yet so my homework this week is to read and try to summarize what I read. Hard when I don't remember. So this chemo saves my life but zaps my brain.

On the bright side..... No big d today ( but it is early). My WBC's are low so I'll be hanging out at home....doing my homework. Have a good weekend all.

Maureen

Jackbirdie

Hang in there Maureen. I also believe it is possibly to improve your cognition. I would suggest you try yo find things that you like to read, even if it's out of a magazine. Do you have a choice over your reading material? I should have asked that first.

Are you at all interested in crosswords or sudoku (sp?). That might be too intense for you to start with. I have been playing online Scrabble for about 5 years. Started for pretty much the same reasons, cognition problems. Mine was due to psych meds (once again, the cure bring almost as bad as the underlying problem, I so get that).

Anyway, it is a daily ritual with me so I continued to play during chemo. I warned my regular opponents about my situation, and that they were likely to be subjected to slow (in all senses of the word) play. A most annoying quality in a Scrabble player. Some days I felt my iq had dropped several hundred points. My "ranking" which is arbitrary and shouldn't matter, but it does, did drop several hundred points. Sometimes I struggled to make a 2 or 3 letter word. Anyway, I never stopped playing and my Scrabble friends deserve an award for patience.

Anything you enjoy doing even a little should help. When I was looking for a house, I was continuously doing small math problems and re-doing my household budget. I wish you fortitude. You will get yourself back. Hugs and mojo coming your way

Jackbirdie

Allison- I also wanted to say I think you have been amazing. When I think you have a husband and 2 girls, and that I know you love them, but they aren't always helpful or sensitive to your situation, and you have dealt with all of that. Plus, you haven't had surgery yet. For all of you who haven't had surgery yet- I think that Is still a major, scary thing on front of you. Very hard to have an optimistic outlook. You are still in the trenches.

I know like others that have had surgery after chemo like Lee and Maryellen, you will do well. You are going to a great place. But I don't think you should expect a positive outlook right now. No outlook at all, really. You need to stay in the moment and face the challenges of your today. Just get through it.

I know I was aware when I started chemo that not everyone was on the same timeline. But just recently it has sort if smacked me in the face that so many of you have still a very long road ahead. As jumbled bamboo observed, we have formed a strong bond. We will see each other through all of this. ALL.OF.THIS.

I wish Bekah would check in. I think her surgery is Tuesday.

Carrie Thursday.

Eileen and you Allison later this month/early next.

I won't stop carrying you around in my heart. We will worry about outlooks and futures later. Right now let's fight through the rest of the treatment plans. Onward, sister soldiers!

SueH58

Katy, worried about Bekah too. Is she having a BMX?

Trvler

Thanks, Sharon and Katy! I hope you all stay around. I miss people when they leave. I have been wondering about Bekah, too. She was having a BMX with TE's I think around the 20th?

It's funny because I can't plan ANYTHING after my surgery. Even with the weekend at Lake Arrowhead. I just mentally can't plan until I see how I am doing. But that's how my brain works. I have to get through A before I can plan B. I had the hardest time just ordering new carpet for my upstairs. Then I kind of waited too late. I am doing it because we have been in our house for 11 years and I wanted to eliminate dust. My husband is allergic to it and I wanted to get the drapes cleaned and the carpet replaced. But it means taking everything out of my master closet, and while I am not packrat, it is an overwhelming thought. So I put if off and put it off until I couldn't anymore. Also I was negotiating with the carpet guy. I wanted him to give me a discount on the whole order and let me do the other rooms later and he kept saying he couldn't do that. In the end, he wanted the sale and my procrastination paid off because he finally gave me almost the entire discount. lol

molly1976

I was definitely like that too, Allison, and then once I was through radiation it was like a fire was lit under me and I have gone crazy planning the next six months of my life. Trips, weekend activities, visits from friends, etc. I know it's not really healthy, because in my secret head I feel like I'm sort of cramming everything in before the inevitable recurrence. Even though everyone including my MO says I am not likely to have one at all. I don't believe them! I wonder if I will ever believe it.

pboi

I'm finally home from my isolation. It was so good to see the kids. And I am very thankful that my post treatment scans show that I have no thyroid cancer mets. Hoping the treatment continues to do its job of killing off any remaining thyroid and/or thyroid cancer cells.

Thank you Katy for your post. I am thankful for the bond that we have here, it has helped me get through some hard days, and I agree we will see each other through all of this!

PB

KBeee

PB, So glad you are home with your kids!!!

Italychick

yes, PB, hug and kisses all day. I was with my grandchildren last night and thought about your exile, and I gave lots of extra hugs and kisses out. I can't imagine how you felt. But glad to hear nothing else has been found!

jumbledbamboo

PB glad you are home!

shaz101

fantastic news pb.

Allison I still have trouble planning or getting excited about things in the future. If it isn't happening today then it doesn't seem to matter. The problem with that is that I have to make decisions fast! Not so great when my brain doesn't work that fast.

It's time for me to get up.

ksusan

Yay, pboi!

Jackbirdie

PB-great news on all fronts. Congrats. 😅😂😅.

shaz101

I'm getting stressed and I think I've worked out why!

My radiation finishes in 6 more treatments. I'm scared! There's one thing worse than treatment and that's no treatment.

Meme117

Congrats Whitney, when do you read at the bookstore?

Good to hear PB, being home must be such a delight.

I do think about recurrence but I think once life gets moving along it won't be a major thought. Its so scary to think that after all this bullshit I may have to do it all again or it may be worse, sucks. I met a women who recurred after 11 years, she had had a lumpectomy. She told her doctor no chemo or rads so did a bmx. She said she was stage 4 to begin with but now cancer free, is that possible?

I just want to get on with life, I feel like I missed most of summer. I want to make plans, lots of plans. I'm going to start a list. First thing is join a gym again, with a pool. Do you think I'll feel well enough to work out during rads? my incision areas are still a bit sore and my arm is still a bit numb, bicep area. I did a 1/2 marathon close to 10 years ago and would love to do another.

DavisD

Good Sunday morning all! I haven't been on in a long time although I've checked in but then felt so "behind" I would get overwhelmed and sign back out without comment. I appreciate Sharon and Katy reaching out when you could have just forgotten about me. It means a lot.

I'm about a third of the way done with rads but no where close to finishing Herceptin (next March) and even though less traumatic in many ways, I feel more alone in this phase because I just fit it into my work day and people forget I'm even still in tx. I would ask for support but I'm not even sure what to ask for. I've also had ongoing physical concerns...feels like ingrown nails on both feet but can't have them worked on because of my blood counts and time in my schedule, ongoing urinary pain...had an order to get that checked but got busy and when I decided to take the time to go couldn't find the order. Anyone else have that kind of pain? And then there's the fatigue that hasn't really gotten better since chemo but they say my labs explain that one. If the hair fairy would just send me a light dusting of hair I'd feel a lot better but hardly anything over 6 weeks out! I do have some long hairs on my chin, ha! argh

I miss you all and want to be a part of this group that understands better than anyone.

Diane

ninjamary

Does anyone have muscle & swelling after chemo is finished? I'm back to taking my lasix everyday. Every morning I wake up I can barely walk. I shuffle around. After an hour I'm good to go. I did a 4 mile hike with my husband yesterday which was great. I did get tired, made him turn around and by the end I was dragging. Though that could have been the sun and heat. I was never good with either of those pre BC.

Trvler

Maryellen: I would work out if you can. I firmly believe that working out GIVES you energy. If you have a day where you are not up to it, by all means skip it. But do it when you can.

Sharon: Yes, exactly how I feel. No treatment scary. Treatment….sucky.

PB: So glad you are reunited and no mets!! Hug those kids!

Well, we got our Swatto. Fun, but I think my kids are a bit old. The best part of it was when I told my DD (who always appreciates a good joke) that I never thought I would hear myself say it but 'go pick up those flies'.

I have not had any selling or muscle issues, Mary. I hope you can get it resolved. Does your MO say it will go away? When was your last Taxol?

I am beside myself with joy today that this am was my last blood thinner shot (at least for now). I may have to resume after surgery. Not sure yet. But every day for the rest of my life at 8:45 am and pm that I don't have to inject myself, I will be thankful.

Italychick

Mary, I have muscle aches, particularly in calves and behind my knee. It has subsided mostly, but some days it is still there, particularly in this heat. And I still have some swelling, mostly noticeable in my ankles, feet and hands. I can wear the engagement ring part of my wedding ring, but not the two bands that go on either side of it. My ring is a wide band, and adding the two bands makes it too thick for me to comfortably wear. I'm afraid of my hand swelling and the rings getting stuck. The swelling is in both hands, so hopefully not lymphedema.

Allison, we play that game with the kids lol, and it is fun, but maybe your kids are too old since my grandkids are all under 5. It is hilarious to send them on a fly search since sometimes they shoot out to the edges of the room.

Hope everybody is doing well. I saw that Bekah responded to a comment a neighbor of hers put on Facebook about homemade chicken noodle soup, so maybe she is just taking a break from all this stuff.

Maryellen when I can't do anything else, a good spin class at the gym works for me. I don't stand up and put pressure on my arms, but it is a great lower body and cardiovascular workout. And I still have some seroma in my lumpectomy site and I notice after I work out it will initially swell a bit, then go down to almost nothing, so I think the exercise helps

Jackbirdie

Diane- so great to see you. Have you thought about taking some FLMA time off and make yourself a priority for awhile? I do worry that you feel so alone. It is hard to know how to ask for help. And I can see that if you fit your treatments in around your work schedule and never ask for help or complain, it would be only too easy for them to forget. Or they may interpret by your signals that you don't want it mentioned. Anyway, you are always a part of us here, whether you check in or not. You have an incredibly long road.

Allison, glad you are done with those shots!

Shaz- yes! No treatment is scary. That's where I literally am right now, and I have to talk myself down off the ledge almost every day.

Trying to exercise, but am still fatigued. I started taking Tamoxifen around the same time I moved. Have lots of muscle pain. Most noticeable quads, calves, Achilles', hams, in that order. Ugh. Gonna try really hard to take a real walk today. I've been counting steps in an attempt to have some measure of my activity level. It's not pretty. I know very well it will make me feel better. I'm not dealing with anywhere near the heat the rest if you are, but still the heat deters me.

Hope everyone has a nice Sunday.