Starting Chemo March 2015

eheinrich

Sharon - I'm so sorry you are going through so much. We are always here for you. In terms of our meet up - the when part is completely open on my end.

avmom

Diane, thanks for the encouragement. I go back for session #2 tomorrow, to check in before my surgery on the 20th. We'll see how it goes.

Sharon, I'm having cording with my lymphedema as well. At my last appointment at the oncology rehabilitation clinic, the physiotherapist was able to break up some cording, but so far, only aggressive stretching is keeping it at bay. I stretch a LOT - several times a day. I do light lifting as well. I have a two pound weight that I keep in the bathroom and do sets of 10 whenever I'm in there. Bicep curls, tricep curls, lat lifts and overhead presses. It's a silly weight, I know, but my LE arm feels fatigued after a single set. There's a paradox to this LE stuff - we are supposed to build up the capacity of the arm without ever straining it! Good luck with that. I haven't figured it out yet, and my LE arm is my heavily dominant arm. I also have some truncal LE, and have now added UnderArmor compression tanks to my daily routine, as well.

I certainly get your desire to have your life back. It's my biggest challenge, too. The thing is,we don't get to have our old lives back. Coming to terms with this, and figuring out ways to embrace this new, unchosen life has me down the rabbit hole. Unless my neuropathy resolves some, I won't be going back to my previous activity level. I can do some things to be active, but they won't be the same things. It seems a small thing, but as golfing season ends here, and curling season begins another loss (don't you love how the cancer treatment community tends to describe these losses as "changes"? I'm nowhere near there, yet) looms. Curling just isn't on the menu with my lymphedema. The rocks are more than 20kg, and sweeping is the definition of strenuous, repetitive motion that is off limits. In my neighbourhood, curling is a major winter activity, with leagues two nights a week until just after Christmas, then community bonspiels that run 3-5 days, including weekends, once or twice a month in small communities in the area, after that until spring. My cognitive fog has me feeling like a stranger, even inside my own head.

I'm starting to look for solutions, though, which is a step up from how I was feeling a couple of weeks ago. I think I'll be in counselling for a while. Know that there are lots of people who "get it". I haven't been up to posting very much lately, but I do try to read something most days, just for a connection to this community. I think of you often.

Gentle hugs to all.

pboi

Hugs to all of you struggling physically and emotionally now. And thank you for posting when you can. I struggle with going in and out of the rabbit hole and as sad as I am to see others feeling this way too, I don't feel so alone.

PB

Italychick

Pboi, all of us struggle, even those of us who seem strong. Yesterday I fell down the rabbit hole after reading about one woman's sad story. Don't know if I was feeling sorry for her or for myself, and then got pissed at myself because I was having a personal pity party instead of directing my sympathy to the other person.

When I let the spiders into my brain, I come on here, and babble, post stupid stuff, etc., and it seems to get me through it. What I post may not always make sense, but you guys get me lol.

Just wanted you to know that I go in the rabbit hole too. Big hugs to all!

Trvler

Sharon: I have typed out or started to type out a message to you three times today. It is one of those crazy days where I am putting out fires all day. I wanted to say I am thinking of you and I want you to feel like you can come here and complain or not complain or anything that works for you. I think we all have those rabbit hole days and none of us wants you to feel alone…because you are not. I, too, am happy to delay the trip if it means you can come.

ThePrincess

Ladies - has anyone colored their hair? If so when and what did you use? My hair SHOULD BE dark dark w/red highlights but is coming in dark with a lot of silver. I need to color it! My skin is very olive and the silver looks TERRIBLE with it

KBeee

Sharon, I hope you get some relief from the issues you are facing. I hate that you have so much to deal with. I have cording, but not lymphedema (yet). I have to stretch the cording several times per day which is very painful. I am not sure it is the best approach, but it has gotten my range of motion back, and I need that for my job, so that's why I took that approach. My stretches are ones given to me by a LE therapist though.

Hoping everyone who has days down in that rabbit hole (all of us), have more days singing with the birds in the trees.

I am going to share a story that's made me pretty sad. It is about a friend/neighbor who finished the same chemo regimen about 2 months before me. She just died a few days ago. Very, very suddenly...was doing yard work, felt ill, laid down and did not wake up. I did not post it in case it was related to treatment. I just spoke to her husband. She had a massive heart attack. Her arteries looked like this had been building for years and years per her husband who just got autopsy results. It had nothing to do with her cancer or treatments that they could see. He mentioned that she had been having symptoms such as extreme exhaustion with very little exertion. She figured it was related to chemo and rads. I am mentioning this because as devastated as I am by her loss, I do not want it to occur to anyone else. I implore you that if you are having symptoms that do not seem right, it may not be related to this cancer crap. Please, please, please get it checked. We've worked too hard to get through this cancer crap to let something like that happen.

Italychick

I've colored mine three times, Lady Clariol touch up kit for gray since it was all the hair dye I needed. My hair has always been dark, so I did a dark brown twice, and now I added dark auburn since I figured once my base was uniformly dark I wouldn't have to worry about "orange" hair. I have always paid for the $250 hair salon coloring jobs, but with this little amount of hair, my $8 gray touch up kit is working just fabulous.

Not one hair has fallen out, I can't even tug one hair out, and my hair is soft. But I do use coconut oil on it, lol!

Jackbirdie

Kbee- thanks for sharing that. It is very sad, but I understand the message. Not everything may be related to chemo, and if we are not feeling right, we need to get checked out.

I am very, very sorry for your loss, her family's loss, and the shock and sadness that must have come with losing the battle after all that fighting. Hugs

Trvler

I am sorry about your friend, Karen. Thanks for telling us though.

I was talking to the guy who cuts our grass and his wife has it and she is not doing well. It is hard to discuss with him because there is a language barrier. He knocked on my door one day unannounced and saw me in my hat so he knows about me. He is the nicest guy on earth and he has a few kids including a 2 year old.

eheinrich

Karen, I'm so sorry to hear about your friend. For her to have gone through all of the cancer/chemo BS and then this is so sad and unfair.

I'm also debating a bit of hair dye. I'm getting more grays than i used to have - not many but I don't care for them. I used to dye it, just a hint of red to my brown. Always made me feel a bit sassier.

KBeee

I have never dyed my hair. But it is over 50% gray now, so I just returned from Target and bought some dye. I got some that is ammonia free, but will just last 6 weeks, so if I don't like it, it won't last too long anyway. We'll see when I get the nerve to use it!!!

Italychick

For what it's worth, the first dye product that I used post chemo had no red in it. People on the forums got me paranoid about turning my hair orange lol, so I stayed away from any reddish/orangey tones until this go round. I figured I can wait until I am an 85 year old Sicilian to appreciate orange hair!

Don't panic about the hair dye. Just smear it on there and go! For a day or two, some of the dye may stay on your scalp, but that makes the hair look thicker lol. And as far as the chemicals, we probably get exposed to more toxic chemicals driving in our cars.

eheinrich

I was just going through my phone & deleting some photos from my trip to see my sister back in June. I went parasailing with my BIL. My niece took around a squidgemillion pics, so many had to go. There was one when we were getting off the seat at the end and I was really confused - I couldn't figure out who the guy was who appeared to be blocking me in the picture. Turns out I was that bald guy.

So glad the hair is coming back...

jumbledbamboo

Hi ladoes! I have been utterly exhausted lately. Just so tired. I fell asleep and started snoring during my bone scan. They had to shake me awake. I was embrassed and they were a little concerned. I got home and crashed out, but I am still so tired. Just a lot going on.

I saw AV mom and I am sorry you are having such a difficult time. I am thinking of you.

Karen I am sorry about your friend. That's just horrible.

I can't remember if I said that the eye doc was a waste of time in a way. I have Horners syndrome and Wallenberg syndrome so that is why my one eye is messed up. The other is pitted and looks like shattered glass. I was told to just use drops for now. oooook. Great. I go back to the local doc the 15th for that. I am so sore from th recon but doing ok. I will check in after more sleep

Italychick

Jumbledbamboo when they did my pet scan I fell asleep and snored. So I hear you

jumbledbamboo

Italychick, thank you! Glad I'm not alone. MRIs too? IDK what it is!

Italychick

I didn't fall asleep in the MRI, but that was mainly because I got a lot of sinus pressure from being face down for so long, so I was focused on my nose being stopped up and breathing. But I fall asleep during everything. Surgery, I was asleep as soon as they put me on the table. Port placement under twilight, I was asleep before they got my IV in, pre drugs. Maybe it is our way of dealing with the stress. During chemo, I zoned out and don't really remember any of my infusions. So I didn't go to sleep during chemo, except once, but I did go to lala land and was dissociated from reality.

Trvler

God, I wish my way of dealing with stress was to sleep. lol. Kind of the opposite.

DavisD

Theresa-your hair looks great and you look beautiful!

avmom-You are doing the things you can. I could really relate to "feeling cognitively like a stranger in my own head" or something like that. It really struck a cord. I grieve for the person I was before and maybe not even before cancer. Before I started having symptoms associated with Sjogren's which was between round 1 2011 and round 2 2015. Keep trying you sound like a special person that can come back and be an even better version of the person you left behind. I know it sounds cliché..Please know you're not alone

Karen-I'm so sorry about your friend/neighbor. It is so easy to attribute symptoms to chemo/rads/cancer...we have to remain vigilant. It really is so unfair, but we were never promised it would be right? My heart is heavy for her family too.

Jumbled-I fell asleep during my MRI and if was to address a suspicious liver lesion! You'd think I'd be having a panic attack but was somewhat disappointed when it was over. I fell asleep easily..unusual for me too.

Eileen-I saw a pic of my shiny bald head on my phone and wondered for a second who that was? ha! So glad hair is coming in consistently too.

I go today for Herceptin infusion and appointment w/MO. I've been continuing to have nerve pain on my legs and trunk, pudendal pain, dizziness, ear ringing and fatigue mostly after noon and lower back pain (kind of a constant aching). I've had these before and they were mostly identified as either from my spine issues or the Sjogrens. I'm not talking w/anyone about these, it's just too much. I am going to see my rheumatologist tomorrow and discuss treatment options. If nothing can be done I will continue to take good care of myself but I've decided not to continue with Herceptin and whatever other preventative medicine he may recommend. I prefer the best quality of life I can manage. I will also get the order for the repeat MRI of that little liver lesion. I don't feel overly worried about it, I think it will be fine.

Coming here helps me too Theresa and pboi. Sometimes I don't even remember posting or at least I don't remember what exactly I posted but it is a wonderful outlet. You all do understand and that makes a world of difference

ksusan

I'm sorry, Kbeee

SueH58

Hey, guys. It occurred to me in the last week or so that I seem to be sleeping more normally--that is, I'm sleeping! It's been 2 months since final chemo. Don't know if that's the norm, but I'm quite pleased to sleep again!

molly1976

Ugh, you guys. Our new VP of Sales just brought his family around to introduce them and his daughter has long, thick red hair, just like mine is supposed to be. As soon as they left my office I just lost it. I don't think I've really cared that much about my hair most of the time, but for some reason it's hitting me like a ton of bricks. Fucking cancer.

Trvler

Aww….Molly, I am sorry. Hugs, Sweetie.

Sue: Yeah for more sleep!

Someone I hadn't seen complimented me on my 'hair' today. Gives credence to my theory that my wig looks better than my real hair. Doesn't keep me from wanting to rip that f-ing thing off because I hate how it feels. Luckily, I have enough hair now that my daughter doesn't mind anymore if I don't wear anything around the house.

BBwithBC45

Nowadays I pay more attention than ever to other women's eyelashes and eyebrows (men's too, for that matter), and their hair, and their boobs. Most of them are probably taking these things for granted, as I used to.

Trvler

Me, too, BB! I find it hard not to compliment women on their hair. It ALL looks good to me now.

Anonymous

Molly, I am sorry you are missing your hair- that must have been a difficult moment. My daughter said something to me that really helped me find confidence- it's when I stopped wearing my wig. She said that when she sees a woman with new sprouts growing back, she thinks of all that woman has been through and how strong she is. I realized that while chemo took my hair and eyelashes, it did not take my smile or my confidence. I find myself now looking at womens hair and finding more flaws... damaged from over coloring, frizzy... and I am thankful for my new sprouts- short as they are they are all new and soft... This morning I walked to work in the rain and loved the drops on my head! No worries about flat hair or frizz! I hope we can all try to enjoy those moments as we may never have them again!

Meme117

Hugs Molly! Missing my hair too😢

Yesterday had full day with herceptin, radiation and then genetic counseling. Feeling ok but so tired. Boob is red and a bit swollen. Having additional testing done called my risk, since it's covered by my insurance I figure why not. If I am at a higher risk for something I'll be more diligent with screenings.

Theresa you're looking great! I also dye with a temp dye, used the red auburn. Still growing too slow for me.

Off to slather on some boob cream.

Italychick

I know lots of us are missing our old hair, and I don't blame anybody, but I must be a weirdo. I have gotten more compliments on my eye color since my hair is gone, and I actually love the 45 second "dry and go" effortlessness of short hair. And I agree kerryd423, everywhere I look I see women with frizzy hair, especially in the back. It's like people make sure the front looks good but they never see the back of their own heads. And especially here in Southern California, with a high activity level and lots of sun, most women with long hair definitely have frizzy, damaged looking hair. I may not go back to long hair, but I hear it will probably be 2 years before I have hair long enough to decide lol. It certainly works with my bike rides!

I just want to be back to at least my pre-chemo weight. I'm obsessed about the weight thing. I hate the weight thing.

Leighrh

It's no secret that the worst of this has been the loss of my hair.... as vain as that sounds, it is what it is. I obsess over it. My hair was nothing special but it was long my whole life. I feel like it was who I was.... I am no longer her.... that sorta rocks me to the core. Just typing this make me tear up about it......trying to see the positive.. it's coming back slowly and maybe it will be so fabulous that I will have wished I'd cut it sooner....... dreams.... LOL!! I too have huge hair envy of ppl I see... I just wanna touch ppl's hair sometimes.... Weirdo... LOL!