Sept 2012 chemo
Comments
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its been awhile, long recovery from chemo and craziness at work. Now trying to get ready for the Holidays.
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Erin - thanks for the Deslyn recommendation. I'll have to check it out. This cold is kicking my butt. I honestly felt like I had swallowed a razor blade last night. No fever, just a stuffy/runny nose, sore throat, cough. I prefer this to the chemo yuckies any day, but still! Ugh.
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I think it's Delsyn or Delsym. We've had some off and on in our house over the last 10 years. I have an almost 11 yr old.
http://www.drugstore.com/products/prod.asp?pid=11096&catid=184155&aid=338666&aparam=goobase_filler
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EnglishRose, isn't it weird how our mates act out their inability to cope? I wonder how many wives do the same thing when they have husbands in chemo? I bet not as many because our culture pushes the Caretaker role onto us (which I admit I think is somehwat more natural for us.) Ask him if HE needs to go on antidepressants.
Mine got on a better one. -
Butterfly, My MO didn't think my eye tearing was chemo related either--but it was. (He said it was allergies, which I knew it wasn't.) I posted this issue on the blog and several women reported eye problems, and to use artificial tears. My eye dr is a family friend so I did go to see him. He (of course) said it was chemo related, explaining that the chemo targets, among other things, mucus membranes all over our bodies, including eyes, nose etc.
My eye dr recommended a specific brand of lubricating drops--systane balance drops, (which are OTC artificial tear drops.) Said those drops contained slightly more oil than other artificial tear drops, which is good for the mucus membranes in the eye. You can use them as needed throughout the day.
Having said all this, if your tearing issues don't resolve with the OTC drops, you should see an eye dr. He might need to prescribe steroid drops, depending on the severity of the problem
It is amazing how knowledgable the women on our blog are. Several issues that my MO was clueless about have been addressed by ladies on this blog. Thank God we have each other.
Good luck.
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Allurbad and twins plus 1 CONGRATS!!!....hope you have a great week.
Cindi I am feeling a bit better tonight, it just seems like my body and mind cannot walk together right now, my mind is 2 steps behind. It is day 8 tomorrow so hopefully we are about to turn a corner....Enjoy your grand babies on thanksgiving. I won't see mine for another week or 2. They have had the flu.
English Rose, I laughed reading your post, my DH tries but OMG, he really hasn't had to do anything up and above what he has always done. I clean on my good days, bake and freeze. Yes, he seems exhausted and napping all through the day. It really is hilarious, a big baby!..he says he doesn't know how I am doing it!.....me either.
Yes this is the unyear, I was worn out when this year started, we planned a great year, that didn't work out. I will be having a stiff drink on Jan 1 st, shed a tear and vow to have the best year ever,....I will dance, smile run my hand through my crew cut, and move forward with this journey...I will try and be strong and I know I will always have my friends on the Sept 2012 board......
May you all have a great week! -
bearcub, chemo done, yes!
twinsplus1 and allurbaddays, almost over, let us know how it feels!
forever, my MO prescribed Ativan at the beginning. I have taken it before when travelling and on occasion but last appt. I said I was trying not to take often as addictive. She said we can worry about that at the end and I am now taking .5 every night (prescribed as 1-2mg as needed) and even that small an amount gives me 7 hours a night so am feeling better even on crappy nadir days.
cindi, I know I am technically October chemo but have been here a lot and have so much appreciated advice before and during my chemo. One more A/C and am hoping that Taxol is easier as mentioned above, but A/C has not been so bad for me anyway. And Neupogen not a single S/E.
Mariposa, hope you are feeling better.
Marian -
cgesq - I might make an appointment with my eye doctor. i really don't think allergies either. I have never had my eyes water like this before. My MO said that it could happen with some chemo, but not AC, AC was hell so I would believe it could happen. Do the eye drops help with the soreness in the eyelids or is there something else that I can try.
Thanks for the brand of eye drops, I will try them.
Have a great night!!
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Butterfly I actually noted that while on AC about day 15-17 for 2 days I was getting red, sore eyes. They looked red rimmed, and bloodshot. I do think it is because of chemo, as it happened the same time, each cycle.
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Bearcub, that is what i am dealing with, and my eyelids and the corners of my eyes are very sore. Need something to relieve them soon.
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I used polysporin drops, I had it in the house. Have you gotten it after each AC or just this one?
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Hi ladies!
I did number 4 TCH today and then slept for four hours. This one kicked my butt!!! I have never been so tired in my life. Now I am awake- and probably will be awake for the rest of the evening. I think I will take a half an ativan too.
Sleep: On another note, I met with the psychologist for the sleep study today. She is teaching me things I should do to help with sleep. The two things I have agreed to try over the next week is 1. Only sleep in bed (don't read, play games on my kindle, talk on the phone, etc - she says you want to make a connection between your bed and sleep- and that is all) and 2. Try to get in ten minutes of exercise a day (walking is fine). The anemia has me pretty wiped out, but I am going to try. Anyone else want to play the improve your sleep game with me?
Congratulations and big celebratory hugs to all of your finishing up your last chemo!!!!! wow! I won't be finished until January, but you are all so inspiring:-)
As far as the unyear, this has definitely been a hellish year. It has shaken me up quite a bit- nothing like looking at your own mortality to give you a wake up call. I also think that because of what we have been through, every year after will be that much sweeter and more beautiful. I have also realized that within this horrible half year of crappiness, I have also found myself feeling so incredibly blessed... just in the support I get, my doctors, my children, all of the things I take for granted. I cry a lot because of sadness, but I also have been crying a lot because I feel so lucky. Is that odd? I came home from my infusion, and one of my best friends who doesn't have kids was watching my son. They were running all over playing spiderman and having such a great time. I love that she is getting to know my son better- and I love that my son has had the opportunity to meet all of these amazing people in my community. Anyway, I think it is normal for all of us to be super pissed about what we have had to endure- and at the same time, I hope we can all take in how amazing and strong we are. After this, I feel like I can do anything.
Eyes: mine are dry and twitching like crazy. I hate twitchy eyes. Cgesq: I will check out those eye drops too! Thanks for the suggestion
Marian: love your picture on your blog:-) I am hoping my sister will come next month and we can take some fun bald pictures to capture my 2012 look:-)
Hope everyone has a great night with no SE!!!! And hopefully we can all kick these holiday blues and have as nice a time as we can in spite of stupid cancer.
Can't wait for our five year reunion!!!!
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Mariposa, I get it. Some of those sentiments you would have seen on that blog post. As for joining you in he sleep game, the bed one would take me totally out of my current comfort zone as the bedroom has become my refuge and I have kind of set it up with a lot of what I really like. And I get away from it all. But maybe that is not so good. Hmmm! Maybe I could try a day/night...
The exercise thing I totally agree with, even the 10 minutes will do you (and all of us) a favour. It rains so much here but even so fresh air is good for the soul.
Marian -
Mariposa I agree with getting out and getting some exercise . The sleeping sucks for me I get to sleep around 2 or 3 then up at 6 and I am pooped by 9 and nap until 1 my schedule is horrible
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marian: your life sounds amazing with all of its travels and adventures:-) And yes, I did read about your silver linings and all of the support you are getting as well. We really are quite blessed.
I know what you mean about the bed thing! Before I began chemo, I totally changed around my bedroom. I made tons of photo canvases with pictures of my children that I put all over the walls next to my bed so I could see their smiling faces when I was feeling like crap. I put a large painting up that I made after I married my husband. I hung prayer flags from the ceiling over my bed. I hung a large canvas that a friend made for me depicting a shamanic healer healing a woman, and I created a little shelf (Ikea spice rack) to put my books. I also put up good luck charms, prayer beads, and other things that could help me on my journey. So my bed is definitely my refuge. Maybe I can put a nice cozy chair in my bedroom so I can still enjoy the room, but not have to be in the bed. Not that I have been in the mood, but the psychologist also said I am allowed to have sex in my bed too. Sleep and sex. That's it.
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Mariposa - Your bed is GORGEOUS! You could never feel too crappy with all that happiness surrounding you!
Also, I know this is a personal subject, but since Mariposa said it, I've gotta ask about S-E-X. As much as I've embraced my new body and my baldness, I can't seem to bring myself to, well, you know. Only 3 times in 5 months and ZERO since I shaved my head. Not sure if it's energy level, sex drive or embarrassment over my new body/hair. Hubby has been EXTREMELY supportive and loving so it's definitely not him...it's me. I'm sorry to be so personal, I just need to know if I'm crazy or if others are experiencing the same.
I'm headed off to bed to fight these stupid night sweats. Waking every 1.5 hours SUCKS! Anyone out there find any comfort for this?
Hugs and prayers to all!
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Twins: I have not exactly felt like a sexy being with my new bald head. Plus, I just feel like crap- so sex is the last thing I am thinking about. My husband worries about hurting me since my joints all hurt- which doesn't make him feel all that amorous either. I haven't had surgery yet, so I want to at least have sex before then. (Sorry if this is TMI). For now, I am just not worried about it too much. It will happen when we are both ready. Hopefully.
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Just posting to confirm that Ativan rocks. Way better sleep last night!! Oh, and I definitely concur with the exercise thing. In fact, I'm part of a study with a professor at a kinesiology department. I do treadmill walks and light weight resistance training (all with a heart monitor strapped to me) from home. I keep stats on my heart rate and speed and reps of the weight training and email them to him. And we talked initially about sleep. He told me to try going to bed at the same time every night and to never sleep during the day. For the most part it was working really well but last week I had sleep problems...but I also caught a cold so that may have been it. Monday night was brutal, though. I can't figure out how I could be so exhausted from the travel to and from chemo (2hrs each way), the cold and chemo itself, then take a full sleeping pill and be up wide awake 4.5 hrs later. Pesky steroids, I bet.
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bearcub ~ The eye watering started with my last AC treatment, that one totally kicked my butt.
Mariposa & Twins ~ On the s-e-x topic, I have not been the same since my head has been shaved, and my husband seems a turned off by the bald head, also, he is afraid of being "contaminated" or something by the chemo, so no action here. Like Mariposa said, so much fatigue and body image issues, so understandable on a stand still - but do miss it...sorry if TMI. Hoping this doesn't permanently change our relationship.
Hope everyone has a great day with no SE's. I had my first taxol yesterday, and other than fatigue from the benadryl, so far nothing too bad. BTW, my MO still wants me to get the neulasta shot for some reason, yesterday my WBC was 35, hopefully he knows what he is doing.
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Not TMI, I just think we all have so much going on physically and mentally that it is on the back burner. Mariposa, I l love your room and your art and that you have your kids's beautiful smiling faces there too. I have some watercolours friends did and my books are in copper elephant book ends I got in Nepal and I also have my prayer beads, singing bowl and other small things important to me. Lots of books, heavy and light. I just got Tina Fey's Hussy Pants from the library as I saw it recommended on a thread. Also I have my iPod Nano and last night fell asleep listening to healng music.
That said here I am awake at 0340 but one of our cats woke me and so I got up for a muffin and milk. More healing music coming up on this dark and very loudly rainy night in Vancouver. The one thing I never do anymore is lie in the dark in the middle of the night and let my mind go to dark places as I used to do. My husband just moves off to a spare room if I disturb him and he is fine with that.
Mariposa, I have the big surgeries to go too, but probably after rads - should know more about that once I see the RO in December.
I hope you are all sleeping well!
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Good morning sisters!!!!! Just wanna wish good luck to all of us going to the BGC today!!!!
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For all wanting the eye drops, the bottle actually says "systane balance restorative formula." Not sure if there are other formulas, but that is the best one for this--or so says my eye dr.
The corners of my eyes and eye lids were very sore when my eyes were tearing so badly. It might be from constantly wiping them. Once I started putting the drops in frequently, the soreness decreased as well. I have also found that it is cyclical to my chemo treatments. It started about 10 days after my 3rd TCH treatment, and by the time I got it looked at, my eyes were so irritated that I needed steroid drops for a few days to take down the inflamation. This time, I have been putting the lubricating drops in regularly, and it hasn't been so bad. Unfortunately, I have been told that it won't completely clear up till after I'm done with all my chemo treatments.
As for the intimacy issue, I join the others who simply haven't been in the mood for any of it. Moreover, between the hot flashes and night sweats, I barely want him in the same bed! DH has been very supportive. What is interesting is that about 20 years ago, my DH successfully battled non-hodgkins lymphoma. His surgery/chemo/radiation treatments did not put a damper on his libido at all.
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Morning,
Mariposa: so happy to hear the tumor shrunk! Soon you will be done with chemo and have your surgery and it will be gone! Then the "unyear" will be almost over! I can so relate to your latest few posts. On one hand amazad and grateful for the outpouring of support and how much closer it has brought me to some friends and family members on the other so incredible sad that the life I had is gone. And so fearful and wondering how to move forward with the fear of recurrance always in the back of my mind.
I also have trouble sleeping. I fall asleep ok but cant stay asleep. Changed Ativan to Clonazepam as it has a longer halflife (works for longer) and also have Zopiclone. Hot flashes and night sweats are awful! I find mornings are the hardest. I wake up anxious and teary and sometimes have full panic attacs. I hate it.
Marian: How do you stop the dark thoughts? I cant seem to control mine very well.
No sex here either. Bald, sad and sick i guess im not that attractive and not really up to it besides. I should talk to him about it I guess. We have also just found out that my DH has his own pretty serious health issue so that has taken its toll.
Hope everyone are doing ok with chemo and SEs this week. Hugs to all. -
Thought I would weigh in on the sex topic- First, it is very hard to feel sexy due to the fact that my boob is mangled, and I am bald. I insist on wearing a bra during sex because it makes me feel a little more pretty- I don't want to look down and see my scar. My husband on the other hand likes my bald head and isn't bothered a bit by my scarred rock hard TE boob. Then the actual sex- it is so extremely uncomfortable! I have a terrible burning sensation the entire time we are having sex. I think it is just irritated/thin because of the chemo? I don't know but it's terrible! No amount of lubrication is helpful.
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Ah, sex...I think I remember that. It's been a no go, for all the reasons everyone has been discussing. Added to the mix for me is the fact that my only symptom (bloody nipple discharge) reared its head for the first time during sex. After that, sex felt kind of scary. There are many layers to this issue, that will take a long time to sort out, I think. I miss the idea of sex, but I have no desire to do it. Any sexy dreams I used to have have transformed into fantasies about handsome dudes bringing me soup.
cgesq - my dh is also a non-hodgkin lymphoma survivor. How do you think that experience is affecting this one?
mariposa - Yay, great news about the tumor! Also I love your room! And thanks for the comment about the blog post...my more mystical side is telling me that finding that paper was a message from my grandparents. DH and I were married on what would have been their 66th anniversary, and the same day I found the note I had been talking with my mom about how much we miss them.
twins - I hate those night sweats with a passion! I keep soft ice packs near the bed to help. I'm also starting in a study at my hospital which looks at acupuncture to treat hot flashes.
And a big YES to the idea of the unyear. I like that word. Everything feels lost down a black hole.
hope everyone is well!
xoxo
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No s.e.x. Happening here. When we were told we would have to use a condom because of the chemo, well that took care of that. I have a new sleep cocktail. It is one Advil and one Tylenol . My onc told me to try it and I have the last two nights and have slept so hard!
Joemommy: razor blades sound like strep throat. I had it last weekend. No fever but they put me on an antibiotic.
Going out turkey day shopping now with my crusty red weeping eyes. My feet and fingers are still numb so hope I don't fall. We can do this! We are women! We are warriors!!
Erin -
Neta69, I do not lie around when I wake up in the middle of the night. I get up and grabo something to eat and some milk (still tastes good unlike wine!) and then come back to bed (it is cold here) and do my Internet thing or read and this AM, listened to music. Just don't let myself start thinking the dark thoughts.
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Here's wishing everyone a Happy Thanksgiving. In the midst of the side effects I hope we each can find some way to enjoy the day in our own way. And I will be thinking about next year's holiday when we can enjoy it more fully than ever before! When all of our taste buds and nose hairs return. LOL. I will be getting my infusion Friday so trying to not think about that and just live in the moment. Blessings to us all!
Becki
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Hello sisters!
So glad to hear I'm not the only one struggling with bedroom issues. Sorry to those who are struggling with me but glad I'm in good company.
Finally went to bed at 2:30am and woke at 7am...4 night sweats in 4.5 hours of sleep! During MY LAST CHEMO TODAY (sorry, it feels so good to say that) I asked doc if we could do anything for the insomnia and sweats. He prescribed neurontin (gabapentin). Says it should kiss both birds with one stone. We'll find out tonight. I get to skip the "nasty-lasta" shot tomorrow so hopefully I won't feel to crappy while my sister is here.
Feeling a bit sleepy now. Think I'll take a nap so I'm awake when she arrives around 9:30 tonight.
Thank you all for sharing your experiences.
Hugs and prayers to all!
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Twins ~ It does make me feel better to know that I am not alone on the bedroom issue.
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