Things I don't tell anybody

DazzlingEagle:

Cancer can be an overwhelming thing but if you need a break from the scans and the doctors appointments, you can take one. If you don't want a scan, you don't have to have it, and I don't know about Perjeta but JaBoo has informed me that Herceptin comes in an injectible form and I have learned that it can be administered at home by the patient. But you don't even have to do that if you don't want to. It's important to live life in a way you can also enjoy it sometimes, and sometimes for us that means taking a break from being a cancer patient. I would not stop treatment but I would try to take a vacation, even if it's a mini day outing, just for a change of scenery and to get your mind off of things.

I am eating all the wrong things, or not eating much, not eating good stuff..........I don´t care anymore, cannot take anymore of this crap shoot.......tired

It is such a crap shoot.

Nisha517:

Someday I think chemo will be one of those antiquated things where people look back and think "I can't believe they did that!"

Hi Hapa - thanks for thinking of me. I'm still stuck at Cycle One of Ibrance/letrozole -- I'm on my second week of "pausing" the Ibrance treatment because my neutrophils are not cooperating and recovering to levels about 1000 mg (I'm stuck at 600 mg). I am also exhausted, much worse than anything I remember from my chemo treatments decades ago. But of course then, I was 2 decades younger, that might make a big difference. They still don't know if I will even be able to get the stereotactic radiation because my original radiation records no longer exist, and they have to make sure the proposed radiation does not overlap previously radiated areas. They sent an e-mail to my original radiologist who is now semi-retired, and I'm going to check this week if they got anywhere. I'm still not liking my oncologist, and think I will ask for another one.

I'm assuming you are away from home getting your radiation treatments. I hope they are going OK, it must be tough to be away from your own home. Wishing you quick healing from these treatments. It is very good they are so comprehensive and covering a large area IMO.

Nisha, I almost gave up half-through chemo (I had the 4 treatments every 3 weeks) as I just couldn't take anymore the pain, the fatigue, the weight gain, the everything that was bringing me down.

A lady I had only seen a couple times in my life but to whom I reached out after I got diagnosed, as she was a 14 years survivor of stage IIIC) convinced me not to.

She said "think about it. If you give up now, all the suffering you've gone through, your hair loss, your pain, everything, would be for naught because what you had is not enough to give you a good chance of avoiding recurrence. and then when it will all be over, you'll look back with pride and say 'I was able to climb that mountain too and did everything I could to protect myself".

I know it's hard. Heck, all of us who went through this know, and these are not memories you can erase. But - you did so much already, you can finish it.

As for your question - I had Taxotere/Cytoxan. My hair came all back, nice and curly, I never lost my eyebrows completely, just the eyelashes, and those came back too (even if, TBH, due to the chemopause, I think half of my eyelashes came back on my chin). I did take a supplement that I got from Puritan's Pride that worked wonders. Too bad it worked wonders on my legs hair too.

Here's the link to it if you want to start taking it too. I took it about 6 months after I finished chemo then I only took Biotin for 3-4 more months, now I'm not taking anything.

https://www.puritan.com/health-beauty-070/ppqd-hair-skin-nails90tab-055485

Be aware of the fact that in the first 2-3 months your hair will grow back very slow and the first 1/4" or so will be like peach fuzz. After which it will start filling in nicely. I dyed it about 4 months after I finished chemo (it was about 1 1/2" long) because I had lots of grays after chemo.

hi seachain and hapa,

Thank you so much for your responses. They really helped.

Seachain- this really helped me: think about it. If you give up now, all the suffering you've gone through, your hair loss, your pain, everything, would be for naught because what you had is not enough to give you a good chance of avoiding recurrence. and then when it will all be over, you'll look back with pride and say 'I was able to climb that mountain too and did everything I could to protect myself". you are absolutely right. I will keep telling myself this 🙂.

I have been terrified about the permanent hair loss thing with Taxotere so both of your experiences really are encouraging. I’ve pretty much lost all my eyebrows already unfortunately. I have some eyelashes left. For the first 3 chemos, I used a cold cap, however, I was still losing a lot of hair and the whole situation was so stressful, I decided to get a cranial prosthetic wig. However, the wig has been glued on is extremely uncomfortable. So now I’m thinking I’ll just take it off on Friday and go bald. I have 2 more chemos left and am hoping my hair will just start growing fast enough after the last chemo.

Again, thank you guys so much for your detailed responses

Parrynd1

You have so much to handle and I feel for you. I am sorry you are having even more worries with the periods stopping---I know mine stopped with chemo. You are in my thoughts. I hope you can find some of the support you need on these boards as we are united in fighting and struggling and suffering with this god awful disease. I don't think anyone knows how hard it is until one experiences it for oneself.

[[ HUGS]]

Amica

Speaking of things I don't tell anyone - my boyfriend doesn't want to marry me anymore.

It's been this way for a while now. I think it's mostly that he doesn't want to be stuck with my medical debt, but I'm not sure. We also haven't been affectionate for a very, very long time. He doesn't tell me he loves me anymore. He has been supportive in his own way, but still... this is not what I envisioned for my love life. I sometimes find myself attracted to other people. While I'm still alive I want to be loved...

But then I remember that I have cancer, and I just do nothing but plod on through treatment. I feel disfigured by my surguries. I think I would need my boyfriend to initiate affection at this point, but he never does. I'm lonely, but I'm too overwhelmed by the cancer to sort out anything else right now. So I just try not to think about it too much.

Maybe it will make more sense later.

Hi Hapa,

I’m reading your posts on this thread and just wanted to say hi from Houston. You must live somewhere in Texas.

We just moved to Houston in the last year from the East Coast—away from our friends and family. It’s been a lonely time, but being diagnosed here away from everything I care about has been really rough. Literally feel like I’m living in the twilight zone lately.

Anyway, if you need a shoulder while you’re in Houston or anything at all, I’m happy to help. I have surgery on the 22nd, though, but otherwise, I’m happy to help if you need anything

hapa & mLghtn, I've just read both your recent posts. Sending you big hugs. I hear you. Surivivorship is not easy at all!

I sort of giggled about the decision making thing because around here it's me that's indecisive. It's odd because I didn't have huge struggles when making decisions about my treatment but now? things like "oh look, new summer flip flops, on sale, brand I like, I've had before, know my size, all I need to do is just pick a color!" ..... nope. Frozen. It's like some of my brain circuits have been fried from making decisions and what I think is the real problem - fearing outcomes - of those decisions. Too many decisions which really had real wrong answers (even if we don't know they were wrong) and it's like those brain pathways are traumatized now and struggle to order a coffee because omg, so many choices and what are the repercussions of each....??? I need someone else to make decisions for me and just tell me what to do for many things. Routines, habits, schedules, protocols are my lifelines right now.

You guys have had such tough times! It's hard. You're strong, but it's hard and it sucks many days.