Things I don't tell anybody
Comments
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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.
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Thank you for replies. The despair is passing. I thought I could post some of my thoughts on the "things I don't tell anybody" thread and it helped to get them out. Trying to focus on being healthy eating and sleeping and happy I am able to do anything right now. I'm still on a very thin line of breaking down at any moment but hanging in.
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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
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DazzlingEagle:
It's ok to not be perfect. I shouldn't have sugar but I'm eating jelly beans right now because sometimes I just need a break from my cancer diet and to have some jelly beans every once in a while.
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It is such a crap shoot.
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Hapa-
Yes I’m telling I really have one more and the last one is just for precaution. It’s helping somewhat. My third one wasn’t bad at all, but this 4th one so far is not as easy. I am very fatigued and achy especially on my legs and feet. And my appetite has already gone down. Hopefully I’ll feel better soon. I’m taking all the side effects medications even before chemo just like last time. I can’t wait till a cure for cancer is found without chemo
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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!"
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Nisha - You really do only need to get to one more treatment. Because when it comes time for treatment #6 you will actually be excited to go. If they would have given me infusion #6 the day after #5 I probably would have taken it. Successfully completing chemo feels sooooo good.
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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.
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hapa
You’re absolutely right. I wish I can just do the last 2 now and get it over with. I see you used Taxotere. Did you notice any permanent hair loss from it? Did your eyebrows and eyelashes grow nack
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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.
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Nisha - the hair on my head seems to have recovered completely, but it took forever and when it grew back in it crept up from the edges so the crown was last to fill in. I was sporting male pattern baldness for along time and it looked awful but I have full scalp coverage now at ~16 weeks PFC. My eyelashes never fell out completely and they seem normal now as far as I can tell, though I was never a big mascara wearer so who knows. My eyebrows thinned but hung in there until the end, but they have only partially recovered. There are some thin baby brows still coming in. My leg hair is back to normal - it was last to stop growing, my pits are still bare. My crotch is sporting a reverse mohawk at the moment, lol, I'm interested to see if that fills in. The hair on top of my head never fell out fully. I kept a ring around the edge the whole way through that seemed completely intact (not thin or anything, but I did buzz my hair after my first round just because I got tired of seeing it fall out) and the hair on the crown thinned but a few wispy strands stuck around until my last infusion. After my last infusion, I lost all those wispy strands on top, and several weeks later some new hairs started growing in. I was nervous as hell waiting for it to come back and mine seemed to take longer than anyone else's on my chemo thread, but it's back. I'd say there's a little more gray than I had before, but to be honest there was a lot more gray than I was expecting in the pile on the floor when I buzzed my head at the beginning of chemo. And some of those grays are turning back to brown at the root. So aside from my pits and maybe my crotch, I'd say things are either back to normal or are showing signs of getting there.
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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
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I’m planning my wedding and my funeral. We are going through all the photo albums and picking songs. Why not get two things done at once? I don’t want my wedding show pictures to be the same ones for the funeral so I’ve been vetting which pictures go where. We are also supposed to be listening for songs to play during the reception, so I have my wedding list and my funeral list for when I hear something that fits. I hope to make it easy as possible for my loved ones. They all seem to think I’ll be just fine and are still making plans for when I’m 70 years old when I’d be beating the odds to see 35. Everyone is asking why I’m not planning a honeymoon and I’ve said it’s for money reasons, but really it’s because it’s hard to plan that far ahead for travel. No one wants to see the truth about my cancer. It’s moving through me like wildfire and we haven’t been able to get a handle on it yet. I’ve stopped trying to explain and just tell people I’m hanging in there even though my lung scan lights up like a Christmas tree, my skin mets have taken over the whole right side of my chest and and my headaches have been consistent each day. Brain MRI in 2 weeks and I’m already thinking about how I won’t say anything about the results. I won’t even mention I had one. Also my period is late. It could be from treatment, maybe our condom broke or who knows what else. Talking to the doctor about that today. Just another thing I won’t be telling anyone. Im the only one handling what’s going on. I’m beginning to be a little resentful of how purposefully everyone is living with rose colored glasses and when faced with facts they become emotionally destroyed. I know it’s hard and sad and frustrating. I either face this on my own or have to be the support and backbone for everyone else plus me. Their emotional weakness is hard on me and I can’t tell anyone what’s really going on anymore.
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Damn Parry, that's pretty rough. Congrats on the wedding though! Does your SO understand your prognosis, or is he/she also unrealistically optimistic?
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Oh, parry, you’re so much stronger than I. I’m sorry you don’t have the support system that you need, but please know we’re here for you through it all. Xoxo
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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
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Parrynd, ((hugs)). I've had so many of the same thoughts as you describe - you describe it so eloquently and honestly.
I hope you have a phenomenal wedding. We're all here for you. I'm wishing you the best.
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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.
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I'm supposed to decide on whether or not I want to do Nerlynx and I'm really struggling with the decision. On the one hand, it may cut my recurrence risk by 40%. On the other hand, I'm not sure I care anymore. I feel like every step of treatment has made my life worse so far and it's getting to the point where I no longer want to spend 40 more years in this sore, mangled body. So why take the meds?
The reconstruction on my cancer side is getting hard and is constantly sore. I see my PS about having a revision and I'm curious to see what she says she can do. I want wider, flatter implants. Or at the very least wider implants. I have this fear that she'll put in flatter implants and instead of contracting, my skin will just kind of deflate and I'll wind up looking even worse than I do now.
I still don't have my shit together for work. After I got back from radiation they decided to keep the contractor they had hired to fill in for me while I was out and moved me to a new job. I don't much care for the new job. I'm having a hard time learning things. I can't concentrate worth shit. And our whole factory has gone on hold due to some problem that I didn't cause, and will probably be on hold for at least 2-3 more months, and we're not profitable because we haven't started producing any sell-able product yet and everyone is getting a little worried that corporate will shitcan our whole project. Which would be fine because we have plenty of money saved, but I kinda need the insurance and it isn't a great time to go looking for another job.
My husband is driving me nuts. He spends all his time either playing video games or watching youtube videos. It's like living with a 14 year old, except this 14 year old expects to have say in everything that goes on in the house. We have to get our pool replastered, so I had a few contractors out and ultimately went with the one who was more than willing to price out the most extensive renovation and has the best reviews. And now my husband is wanting me to get more quotes because he thinks this guy is too expensive. I told him that if he wanted to manage the project and pay for it, he was free to get more quotes and hire whoever he wants but if I'm managing and paying for it, I'm going to go with the company with the best reviews and get what I want. We were going to get new countertops before I started chemo and he pulled this same shit and we never got anywhere with that project. He doesn't want to take responsibility for any of it, but he wants to make all the decisions.
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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
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Hapa,
I haven't posted in a long time, but your post brought up many of my frustrations, hopefully posting will release some. My issues are different than yours but I can definitely relate to your ambivalence/apathy towards treatment. initially I thought I had a really great outcome but I've had problems most likely from the combo of the chemo and tamoxifen that have affected my quality of life to the point that I had to stop taking the tamoxifen, and didn't tell my doctors because I don't want to try another drug. I just felt like I'd rather live shorter than live like that. The tamoxifen gave me such severe hot flashes that it felt more like flu like fevers (hot then chills during the day, nausea). I woke up every 2-3 hrs at night, drenched in sweat and in pain. My whole body was so stiff and painful I've literally seen 90 and 100 yr old patients have an easier time getting up in the morning than I did--I had to set alarm for 4am to take a prescription pain med so I could get up at 6;30 to take my kids to school. On top of that I couldn't concentrate or think clearly and was super emotional, and terrible fatigue, it was like having the flu all the time, worse than chemo. It was just unbearable, so I quit and felt much better within a week!
Since then though I still wasn't "normal", the hot flashes are much better and I sleep fine now, no pain at night, no brain fog, no extreme fatigue . However, anytime I did any new activity, this could be something minor like walking the dog to the beach and going up the (>100steps) stairs, or cleaning the house, or gardening a couple hours,or a shift at work nursing, I experienced muscle cramping, all over aches and pains, headaches, it felt like anywhere I've ever had an injury/ strain in my body was triggered. NSAIDs did nothing so it was not arthritis and BTW during my first 2 months of AC chemo I was literally running up huge hills on the trails with my dog on my good days. Needless to say say I've been freaking out over my ability to do a 12 hr shift at work and already had to call in sick a couple of times, started fearing I had to go back on disability or could get fired for too many sick calls.
I went to 3 doctors recently to find some sort of treatment/physical therapy--anything so i could live what to me is a normal life--not the life of a (in my mind) 90yr old. So my pain specialist started me on Horizant ( in case this helps anyone out there) a new form of gabapentin for nerve pain (although I was complaining of muscle tightness and pain) and it has been near miraculous so far. I worked 12+ hrs on saturday and only had mild discomfort (like normal after a long shift), it didn't trigger horrible pain in the days following either and no longer getting muscle cramps/tightness with increased exercise/activity. I called my dr and he responded that I obviously have chemotherapy induced neuropathy. Its weird because I have no numbness, tingling, or burning pain that is common with neuropathy. I guess( and he said) its more like fibromyalgia which --although the muscles have the pain---is more of a nerve disease or nerves firing too much. I just didn't have it before (even my pain specialist reminded me of this )and feel like its ruining my life. Hoping this drug will keep it at bay for a long time, I take it at night so I sleep great and am not groggy during the day. I am now reconsidering trying the tamoxifen again but really scared----I'm starting to wonder now if the tamoxifen started it because I don't really remember having it before that. Its just all such a blur now, I know I felt weak and terrible at the end of and after rads for a few weeks, then started tamoxifen, IDK.
I finally told my BS I wasn't taking tamoxifen and she said it worried her (she was the most positive of my drs and made me feel less worried about recurrence than my MO) and said she knows many don't take it but in my particular case I need to find some way to tolerate it, and even an AI wouldn't be as good in my case---not that I even want one...needless to say her reaction scared me.
Also we are super broke, almost financially ruined from me having cancer. I couldn't work for over a year, my husband has his own business but has to travel for it and couldn't because he had to take me to my chemo tx 1 hr away and help with our kids. And we were in the middle of adding a second story/complete remodel on our house and living in a rental when I was diagnosed. He was helping manage the workers on the remodel but terrible in making decisions--would agonize over getting the best deal so it was no longer productive and we just had to get things done so we could move back in and not pay rent. I had to just tell him multiple times I'm going to pay for this from my money so I'm making this decision for this countertop, floor, faucet etc whilst I was the one going through cancer treatment! I was so angry about his seemingly OCD like limitations when I had cancer. Oh and when we were moving my husband made sure not to skip his many hrs of tennis. He plays tennis, watches movies, does Facebook, in my mind excessively for someone in our situation--I guess its his escape. It was quite painful for me emotionally, I felt like we were in the same house together but didn't interact much other than with the kids. He's now away overseas probably for the whole summer, trying to increase his income (after me urging him to) and tbh, its a relief. I've learned to set real hard boundaries with my family in the last year and its been helpful for me, I recommend it.
I realize I have to be thankful for my family, my outcome with the cancer, my beautiful house I am now in.... but if I feel like crap and under stress because I can't work and we can't pay bills how can I? I would have to be full of narcotic pain meds and not work to tolerate what I was going through before, also what if it gets worse from more drugs(tamox or AI's)?.... Its all so difficult and depressing. ok, that was a long rant, I could definitely go on in the many ways this has ruined my life in activities, relationships, the way i feel about myself, but I'm sure many of you are familiar with these effects. I've been very frustrated the last few months, literally just trying to enjoy these good days I'm having right now....
Hope this helps someone else
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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.
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Thank You Moth for your funny and thoughtful post, ((((hugs))))) to all
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mLghtn - I think if the tamoxifen is leaving you with a life that isn't worth living, then stopping is the obvious choice. I know it reduces recurrence, but if the cure is going to ruin your life, why bother saving it in the first place? Why can't you do OS/AI? I'm on anastrozole and having very little issue with it. Some hot flashes, but no joint pain at all. I know how you feel about your husband finding time for his hobbies. I feel the same way! I was largely ok through chemo, and even through surgery and recovery doing things. But radiation seems to have taken a lot out of me, and I haven't really gotten back to the way I was. I'm tired all the time, and my new job has me on my feet a lot, and I'm trying to learn new things, and everything takes me longer than it used to so I'm working extra hours, and it's exhausting. And then I try to make time for exercise because it's what my MO recommends. And then I get home and my husband is just playing his stupid video games! He knows how to cook, but he hasn't started dinner! He knows how to run the washer and dryer, but he ignores the pile of laundry in the bedroom! I'm trying to go back to school so I can get another job if my current one doesn't work out, but I don't see how I'll have the time to do all this stuff without any support. And he just keeps playing video games! The worst part is that I knew when I married him what I was getting in to. I just never thought I'd need him to take care of things because I was always so independent.
I'm still having issues with anxiety. Not all the time. Not even most of the time. But now it seems I only have two possible states: don't give a shit, or total fight or flight panic. There is no in between. For the most part I have just stopped caring about things I used to get worked up about, like problems at work and issues with our pool remodel. I just don't care that much. On the other hand, things I do care about that would normally have made me just anxious enough to get peak performance now fill me with so much anxiety that I dissociate and can barely function. I took the GRE twice and underperformed my practice scores significantly both times. The first time I thought it was just because I was thrown for a loop because I'd never taken it before, but this second time I recognized all the feelings of panic and anxiety, that feeling of looking at something that I should know but it seemed like I'd never seen it before, that feeling of not being able to stay in the moment enough to concentrate, like I wasn't really even there. And afterward, the depression and anger, and when I spent the rest of the day thinking about what I would do if the cancer came back, well that was the clincher. It's like any little bit of nervousness or anxiousness quickly escalates and I get overwhelmed, and then it's like I'm right back in the middle of my chemo days. I talked to a therapist who basically said there's not a lot I can do, I'll just have to wait it out. She thought that maybe after my revision surgery and port removal that escalating anxiety will start to dissipate.
Speaking of which, I had the surgery yesterday. I've still got tons of tape all over my chest but from what I can see my tits look a lot better.
Margot - I'm not in Houston, I just went there for radiation.
moth - I used to have the same analysis paralysis but, I don't know, I feel like I don't have time for that anymore, and if I wind up making a bad decision or not liking the remodel I'll just do it again. Now that I have no hope of retiring early (because I need the insurance) I'm much less concerned with wasting money. So I just forge ahead and if I regret it, I'll do it over. I used to be so frugal because I wanted to retire in 10 years, but no longer. It's a lot of the reason why I'm going back to school, if I were going to retire early it would have been a waste.
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