Starting Chemo, November 2013 Group

Yup, slow walk. On Wednesday I get an infusion of zometa. I cheerfully set up the appointment, then odd some reading and found out a lot of people feel like they've got the flu after the first infusion. Great. My insurance just came through with the authorization. I'd asked my MO about getting it, after the findings from the December San Antonio conference indicated that it gives us post-menos a 17% decrease in death. That sounded good to me!

I'm trundling along, the pains that recurred were absolutely in my muscles not my joints, it seems we "get" to have flashbacks of chemo pains, I'd rather have LSD flashbacks, personally. From my AI I've got some joint stiffness, but nothing that I can't handle. I flew to SoCal for the day Thursday, and my shoulders ached being stuck in that dreaded middle seat! I thought about you Becca, and wondered how your trip to UCLA went. What an honor that your DS was accepted there! Is he going to make the right decision on his own?

I'm finally checking in next week with my primary care md for the first time since starting treatment. Such a lot of updating to do. I've figured out that the foot pain I've got isn't neuropathy at all. I'd forgotten that I had a bad reaction to one of the antibiotics I was on for my postop infection. It left me incapable of walking up stairs by shortening the tendons in my lower legs and ankles. When this happens it sometimes slowly resolves, sometimes doesn't. Duh...that's what's up with that problem. Somehow it's good to know what caused what. One good thing that's come out of all this, my chronic migraines were magically reduced during treatment. I've figured that out too: I was on either Ativan or sleeping pills since diagnosis. I was a good girl and tapered off. Bam! Back to headaches 5 of 7 days a week. I've put myself back on the remainder of my drugs, taking just 1 Ativan per day: headaches so much better. Going to talk to primary about that!

Ellen - so great to hear how you are doing! Please keep checking back in and join thr FB group.  Love the photo.

Wrenn, how are you?

jab, I am so happy to hear your test results were good ones!

Lisa I am glad you are feeling better and starting your radiation soon.  I have found the techs to be personable and competent.  Sounds like your are too.  

Ellen, it is good to hear from you! I can't wait to have the hair you do!  You seem very active and that is great!

Bec, congratulations that DS chose UCLA.  It is a great school!  Sounds like you are having joint pain and sleep problems with tamoxifen?  Great.  Just what I need to look forward to.  Even though I am so tired from radiation, I still have problems sleeping.

The techs told me to listen to my body and take it easy so that is what I have been doing for the past few days.  No walking.  Monday is my last radiation, and hopefully I will start feeling better soon.  This achiness and fatigue is worse than from the taxol.  At least the taxol SEs went away over time.  This is constant.  An tiring.

For those of you who PMed me about our Facebook group, here is the update.  For those of you who provided me with your emails, I added you via email.  If you don't receive a group invite, let me know.  For those of you who gave me names, I can't add you unless we are friends some friend requested you. A few of you I could not find so I PMed you with my info so you can friend me.

Monday is my very last radiation and my last visit with my RO forms while.  I hope I don't cry again as I have done for the last 2 meetings.  Bec, like you I am cynical about the follow up care process as I am about everything these days.

hi everyone: I' ve been reading faithfully but somehow I can't seemed to comment, too tongue-tied. I realize we all went through drastic dramatic experience. After chemo I went through post dramatic experience. I've been seeing a social worker privately. I cried and cried while seeing a councillor for the first time. It is getting better, I don't take any pills for depression. I go for walks. I'm 10/25 just about half ways through done. No SE except getting tired and having naps or once a day, going for walks once a day. On the brighter side. I lost 18 lbs since October eating healthy and eating six smaller daily. Ellen, I'm just starting whisker-like hair. Lol. Wow! You have such nice hair. Next time I will try to comment on your posts.

Amazon, I had that same lactic acid feeling but it has greatly improved.  I hope yours does soon. My MO says I'll get a mamo on the effected breast every six month and the other yearly. No blood work or other tests unless I turn out to be carrying the gene and then they might add a MRI.  

The most intense was gone after about 4-5 weeks.  My legs still ache but nothing like that.

Phebe, it's good to hear from you! It sounds like you're doing good things to take care of yourself.  

quirky: I'm not there yet, as today was my 5/25. So far I am experiencing some redness and tenderness.

Only 3 more to go and you are done!!!  

Congrats on being done with rads! I hope your SE subside and you get a nap in when you need it.

I've had a really lousy week. Whatever SEs could show up have. Hubby had to take me for my final CBC as I didn't think I could drive. Too weak. Got put on antibiotics because, overnight, I developed 9 infected hair follicles under my BC arm. There's no hair there, but it must be trying to grow back. This problem has be going on since last summer, though not this many at a time. I'm just glad that it finally showed up when I was going to the doc so she could see it. I don't know how, but I think it must somehow be connected to the Big Ugly. I lost 12 pounds this week. I've managed to eat just enough to not feel too hungry. Really nasty taste at the back of my throat makes everything taste bad. Starting to get a little better, slowly. Honestly, if I had known that it would be this bad, I don't think I would have had that final treatment. I'm really not sure that the effects of it were worth it.

Smrlvr, congrats on finishing rads. I would believe the techs about the pain. I'm sure that they hear more complaints from patients than the docs do simply because they spend more time with them. I understand about sitting in the car crying. Finishing treatment seems like it would cause some issues. We still have the fears and SEs, but now no one will understand what is wrong. It's over, why are you still feeling bad? Just getting through this won't make all of the problems go away. SEs linger, fear lingers, uncertainly lingers. Hopefully each day will be better than the one before.

Quirky, only 3 more!! Just a few more steps to make it out of the tunnel.

Amazon, I'm having that lactic acid feeling in my legs also. Forget going up or down the stairs. Just walking through the house is a chore. I don't think there is any blood tests that targets BC. Apparently, there really isn't ANY tests that does a very good job of picking some of them up. Not a happy thought, but we all have to try to believe that we've done our time and we'll be fine.

Ellen, great hair. And you're looking so good!

Jab, sorry about your vacation. But a weekend away would be so good right now. Hoping to get one in later this summer. A weekend that is, I know there's no vacation away this year for me. Raining here too, but at least it's not cold. It's supposed to clear up by tomorrow so hopefully I can get the daughters and sons-in-law here over the weekend to get the pool up and going.

Phebe, it's good that you are getting the help you need. Stick with it and everything will get better someday.

I may have to find the strength to knock the next person who tells me the worst is over in the head. Including my darling hubby. The worst won't be over until something, anything, including water tastes ok. I don't even want good at this point. I just want ok. When I no longer feel hungry because everything tastes funny, then the worst will be over. So shut up already!

Rant over.

Excellent rant, wallymama!  

Ahhhhh, the pervasive infected hair follicle.  Why didn't ANYONE tell us this would be such a problem during treatment?  Remember my butt boil?  Infected hair follicle.  I also had a stye in my eye for about a month during chemo -- infected hair follicle.  It was huge.  During rads I had raised itchy ired bumps all over the treated area -- inflammed hair follicles.  Hair is the bane of our existence during this odyssey.  

jab, good luck with your surgery.  I hope it's easier this time knowing what to expect.  How many rads will you have?

Smrlvr...you're done with radiation!!!!!!!!!!!!!!!!!!   Woo hoo!!!!!!!!!!!!!!!!!!!!!!!!!!  I know the completion comes with mixed feelings, though.   I'm going to ask my MO on Thursday about the aches and pains...I'll let you know what she says.   I've actually played out a dream sequence in my head where I tell her how terrible the aches and pains are, then she says they're from tamoxifen, then I tell her I can't take the pain anymore, then she says we'd better take my ovaries out and start on AIs.  It's almost too much to hope for!

Wally - I hope your feeling OK soon. I can see you coming through the chemo tunnel - We are here waiting for you - No women left behind!!! (That's me cheering you on....You can do this Wally!)

Bec - You are the Queen of indignant infections. Those infections sound really sore.

smlvrl - Congrats!!! And a good cry is always theraputic! I'll cry with you too.

Thanks ladies for the words of support, re: my surgery - BC treatment is definately a marathon, not a sprint. Just when I am feeling like I am getting a bit better, Whammo, something else comes along.

Hot flashes, OMG I am sick of hot flashes!! Does anyone have any advise on how to cool these down? I am swinging between being very hot to very cold on a 4 minute cycle - Boy, oh boy,  have I had enough of this.

Quirky girl - Have you noticed a relationship between the number and intensity of hot flashes with the number of carbs consumed.  I have limited my carbs after 3 and upped my protein (cheese, nuts, etc for snacks) and I find it has helped. 

The last bath I took was a joke!.  I was cold and drew myself a cozy bath to ease my legs, aches and pains and heat to the bone.  I put a little olive oil in and some rose oil.  It felt wonderful!  However, when I tried to get out I couldn't get purchase on anything.  The oil made me AND the bathtub slippery as an eel.  I finally had to have my husband pull me over the lip of the tub until my body was more out than in and I fell on the floor.  No dignity in any of it.  No grace..  

It will be a LONG time before I take another bath.