August 2013 Chemo Sisters

Thank you Rachel for the post about Julie. Wow! It really helps us put all of this in perspective. Good vibes to her family.

I'm sorry about what everyone is going through. I'm thinking I have lucked out a bit in that I haven't had any major complications, just basic SEs. I go see my MO on Tuesday for checkup and bloodwork and then TC#5 on Wednesday.

Hi all

Been away for about a month just getting on with things. To be honest the religion thing got a bit intense for me and I was so disappointed people left. I can't see why we can't put up with a certain amount of OTT as my daughters say ( over the top) in each other. We are all going through a tough time.

I've been down the last day or so and was going to do a big whinge, then I read about Julie. One thing Julie taught me... If I get to stage 4, never let anyone tell me what to do... I'll be eating as many hamburgers as I want! Bless her wee girls.

So I have done my 3rd FEC. Total side effects- stomach lining stripped...reflux and burning in stomach while eating. Even with medication it was uncomfortable. Extreme fatigue days 4-6 , but not bad the rest of the time. Each time my chemo was delayed because of low WBC / neutrophils so now instead of finishing in 1st week of dec it is likely to finish immediately before Christmas. I am really down about this. Not only will I be useless for Christmas but I'll just get to recover from chemo and I will be back at work again, not. Much of a holiday. Other side effect that is increasing is pain, or rather aching, in my thigh bones. This is getting steadily worse and more persistent. It is not listed as a side effect anywhere for FEC (see below for what that is). . I'm getting paranoid about it. Is it something to do with the WBC problem I have or is it more sinister? I thought bone pain was a taxotere side effect. Oh also constant running eyes, which I thought was hay fever but isn't. Embarrassing because people think I'm crying all the time.

So now I'm about to start the docetaxel ( taxotere) and I am really down about that too because I found out that the neuropathy can be permanent. Embroidery is my major activity when not working. I can't imagine not being able to do fine finger work. What has been your experience of the neuropathy? You might have said it before but there are a lot of pages to go back through so I'd love to hear again.

I'm also really down about the possible weight gain on taxotere. I've heard it's really hard to get off and even young women haven't lost it after a year. I didn't think I was that vain but if it was just fluid retention I could cope, but apparently it's fat too. I've worked hard to lose weight since diagnosis and the thought of piling it on when I'm still eating nothing is depressing. Positively, at least I now have a wardrobe that goes from size 10 - 16!

My husband decided to distract me by approving a complete kitchen renovation. I was worried if I got sicker how we'd pay for it or what he'd do with it if I die as he couldn't cook a sausage. But what the heck...in the end! A dear friend says he could use the new ultra fancy old fashioned style range oven to advertise for a new wife : ). Same dear friend said don't worry about the students thinking you're fat ...they think we are all old and fat anyway.

So I've spent hours deciding on taps ( ummmm...fawcets?) and cupboard designs, marble bench tops, flooring. Wow what fun..until I stop ... and there's silence... Too much of it ...and I feel sad and he goes and turns tv on when I start to talk about how it feels, because he isn't coping with it well, even more than me.

This has got long. I see some of us are about to finish chemo...will you keep posting? It would be great to see how you are going. I really don't want to belong to another forum as it's hard enough keeping up with everyone on one! Love to all!

Gashgold - how fun about the kitchen! I wish we could renovate ours. It's been the same for 20 years when my hubby (a single guy at the time) built our house. It definitely could use a remodel! We had planned on getting new carpet in the living room & bedrooms right before I was diagnosed, but then we put it on hold. At first I was worried about spending that much money when I knew the medical bills would be piling up, but then hubby also said we don't need to be pulling up the old carpet & stirring up who knows what, and having carpet workers in the house while I'm going through chemo. Good point. So maybe that'll be a good after chemo treat.

I'm sorry about the SEs. I think you're the only person I "know" doing FEC. I haven't heard or bone pain being a SE for any chemo... usually it's from the Neulasta shot. Are you getting that? Even if you're not, maybe try taking Claritin? That's what we (Neulasta shot girls) take to ward off bone pain, so maybe it would help? I'm about to start Taxol and am worried about neuropathy, too. I'm going to try icing my fingers & feet during chemo in hopes of reducing that. We'll see if it works.

Had a long day of appointments yesterday with three surgeons. My breast surgeon wanted to see me halfway through chemo, and I also met with the plastic surgeon and gyn oncologist for the first time. Looks like I'll have both surgeries (bilateral mx and laparascopic hysterectomy) at the same time - probably the week after Christmas or beginning of January, if I stay on my chemo schedule. I started feeling sick to my stomach sitting there talking with them listening to everything that's going to be done to my body. <sigh> I know it's necessary, but I've never had major surgery ever, so the whole idea is starting to freak me out. Oh well, still have four chemo treatments to get through, so I should just concentrate on that!

Well I am still in the hospital. Waiting on one last test to come back on the infection fluid to see if bacteria is growing. If no bacteria is growing I should be able to go home. The antibiotics have been working so that is a plus. This test will deermine how we proceed with the implant exchange!! Just ready to be home. Please keep me in your prayers!!

Gashgold - I'm past my fourth taxol treatment and yes, I have runny eyes and a runny nose but it's nothing more than annoying. I've had no neuropathy that I've noticed. As for the weight, I think it's the steroids they give you to deal with the other chemo and not the taxol itself; I've kept my weight stable, only fluctuating within a five pound range, without too much thought. I have also heard that the chemo weight is hard to lose, but I'm very motivated because without the 'girls' I look like Buddha, all belly, and I really want to avoid reconstruction beyond neatening up what's left.

As for my dental woes, I think things are looking up, each day is different. Now I'm on two antibiotics and sometimes I think things are better but later in the day everything starts throbbing again, so I'm not sure who's winning, the infection or the antibiotics. It's a good sign that I can wear my upper plate (partial denture) today, it's only a little swollen. If it starts hurting later I'll remove it again. I'm not used to having a weak immune system and I'm still a little freaked out that the mouth stuff is still bothering me, if the meds were working it usually wouldn't be bothering me at this point. Also, it's kicked up my eczema again, I have little breakouts of it all over (instead of the usual one spot here and there). In short, I'm kind of a physical mess and I hate it but it'll get better, right?

Beeve- you have no idea how much your post has cheered me up! It's doable then.

Hoping both you and Togetherness get through your infection issues with speed.

Gashgold - I went bald before it got really hot and even now, with fall breaking through (only one or two frosts so far) I only cover it up if it's too cold or flies keep landing on it. What's the big deal with being a bald woman? I have moles too, big deal. There are folks walking around out there who shave their heads AND have spikes implanted, or even horns.

As for head care, I had horrible dandruff, more itchy than flaky, but now I just slather my head with my favorite skin stuff, Bag Balm. I also like using a nice facial scrub on it. I feel no shame in walking around bald, it's not like you're fooling anyone with the scarves and itchy wigs. They'll still know you're hairless which probably means you have cancer and are undergoing chemo and why is that something of which to be ashamed? It's a fact, not some faux pas or immoral act. I'm walking pretty slow and breathing labored lately, there's no way I could pull of appearing to be normal and healthy even with two hours of make up and a $500 wig.

Maybe I've been through worse, as far as appearance goes. I went through a long process of dental work where I walked around looking like I'd been in the ring with Rocky Balboa for ten rounds, swollen and discolored often. "This is what I look like; if it bothers you but that's your problem, not mine" has long been one of my mantras. It takes a huge stress of my shoulders. It's not that I'm not vain, I'm vain enough that I've had eyeliner tatts and had already decided I needed an eye lift before I got diagnosed; I'm saving that for later. I'm a theater person, so I do know how to tart up and tart up well, but not all the time.

Forgive the rambling. I'm not a girly girl, I think it's also an 'equal rights' thing. Men aren't generally judged by their hairlines or the wrinkles on their faces; as long as I'm clean and smell okay, what's the problem?

Beeve - it's interesting about what you said about not being ashamed. When I was first diagnosed, I had this emotion that I couldn't figure out. I wanted to hide. After a few days I realized I felt ashamed. Then I felt angry I was ashamed. Why the hell should I be ashamed? After some more thinking, I realized that it was because I felt like I'd failed, I was a loser and couldn't keep my body sorted...and worse...somehow I may have deserved it. This is not normal emotion for me, so where on earth did it come from? I wondered if it is a Judeo-Christian hangover thing, that no matter how much my rational brain just won't accept that sort of crap thinking, deep in the dark places of my (western, J-C) culture this ancient attitude insinuates it's way into my/our emotions.

I did a bit of a search but not many other people mentioned this feeling...maybe I'm just a head case!

Eye liner tattoos. I've never heard of that! I didn't start wearing make up till my 40s and then it was because of my job, but now I find it fun. ( where I live, this is not exceptional...about 50% of the women I work with don't wear make up) but putting on eyeliner with less than perfect eyesight is a pain in the rear. Was it very painful? Do they do it along the lash line or on the 'inside' bit ...don't know what that's called?

Sorry to hear its getting harder to get around. I just got back from a walk and there was definite slow down happening too. Just had longer to look at the spring flowers!

Beeve - I can't speak for anyone else, but for me, it's not an issue of being ashamed. I haven't hidden any part of my journey from anyone (I even have a blog detailing my daily journey through chemo) and I certainly don't think I did anything to cause or deserve my getting cancer. The issue of hair, for me, is just that I'm too self-conscious to go topless. I have had the same hairstyle for years and years, and just recently got up the nerve to color my hair for the first time. It takes a lot for me to change ANYthing about my appearance. The wig I bought even looks almost identical to my normal hair, only without the highlights. So to think about going out with short hair or NO hair... that's just not me. I don't feel that I'm "hiding" the fact that I'm sick or trying to fool anyone, I just want to look like ME. I have been going out & about with just a little cap or my bandana tied on my head, but it does make me feel a little conspicuous, mostly because I know it advertises that I'm different. I'm definitely more of a wallflower than someone who likes attention.

When I was first diagnosed, I thought about having permanent make-up done. I kind of wish I had, now, at least on my brows since they are starting to thin. My eyes water so much these days that all of the makeup I carefully put on ends up running off anyway. But now it's a moot point because getting anything tattooed during chemo is a no-no.

lighthouselady, I'd like to ready your blog, if it's OK. Where do I find it?

Thanks lighthouselady, I'll check it out!

Just curious for all you chemo ladies.....how many of you have been working while you are getting your chemo? I have had to keep working, and struggle to be able to get the time and rest I need. With the A/C I take off Thursday and Friday and then go back to work on Monday. Wondering how I will do when I get to the 12x weekly doses of Taxol. Hoping to take Fridays for the treatment and then go back on Monday. Only have limited time off at this point after surgery and then chemo.......

Just wondering how the rest of you are managing?

Thanks, Martha

mankatostate - CONGRATS on no more chemo!!!!!!!!!! Just think, each day now as you feel better, it's for good! Woohooo!

RhodyMMM - I am working, too, but I only work part-time. I work Monday & Tuesday on my chemo weeks (infusion on Thursdays) and Wednesday & Thursday on my non-chemo weeks. There is no way I could work full time and not miss days, because I'd have to take every infusion day off & then the Friday after because I'm miserable. No clue how I'll handle taxol - I'll find out this week!

mankatostate, congratulations on the August Chemo Sisters Finished Club!!! You will feel better + become stronger with each day!

I worked throughout chemo T/C every three weeks. I had treatments on Fridays + took Monday's off. On the last nfusion I took off Monday + Tuesday.