Starting Chemo April 2009

Hi Everyone,

I haven't posted in a while alot going on in our lives. I think I'm going to write a book, maybe you guys can help me come up with a name. Here's what has happening in our lives-

Finished chemo 7/16, so happy to get it over with DH and I planned to spend the wkend of the 25th (9 days after chemo) at the shore to celebrate. I was even going to work on my chartwheels while we were there. The night before we were to leave my husband c/o numbness and tingling in his feet. I'm a nurse so I didn't want to fool around, especially with all the stress that he has been going through with my illness. By the time we got to the ER and he was seen by the physician the numbness had spread to above his knees. He was admitted with a diagnosis of Guillian Barre Syndrome. It's unknown what causes this syndrome, but usually occurs after being ill with a viral or bacterial infection. The doctors all wanted to know if he has sick recently. He has been pushing himself, and just overwhelmed and exhausted since my diagnosis. Guess we really didn't know how drained we both were until this happened. He was admitted and started treatment right away. This syndrome usually progresses rapidly and causes paralysis starting at the feet and works its way up to the head. It's concidered a medical emergency because it can also impair breathing which requires mechanical ventiation. When we got the dignosis I was a wreck, hysterical. Could not stop crying. All I could think was, Why?! What the hell have we done to deserve this. First cancer and now this. By the time the doctors had started the treatment the tingling and numbness had progress up to his hips. He was still able to walk. The medical team was preparing us for the worst. Then something wonderful happened, the numbness and tingling started to recede. He spent Five days in the hosp. getting IVGA. After six days the numbness in his legs was gone. The doctors are amazed. They believe that it was caught in the very early stages and treatment was started right away. I'm calling him my miracle man. We still have to keep an eye on any reoccurance of numbess ot tingling, and go right back to the ER if it returns within the next two weeks. So far so good. He is home, and I thank God for this miracle. So when we both get back to "normal" (whats normal?) we are both going to do chartwheels!!! - Paula   

TITAN - My exchange surgery is 8/10.  I had bilat mx on 3/6, at that time they put tissue expanders in me (plastic fillable pouches).  They filled them to 70cc at that time.  Before and continuing until mid June, I would go back to the plastic surgeon the day before chemo for her to put in more saline solution.  This would fill the expanders and stretch my skin and pec. muscles out so that now (8/10) they can go back in through the same incisions and take the expanders (which by the way I call my boobs of steel as they are hard as a rock) out and replace them with silicone implants.  In another few months they will make nipples from the existing tissue and then later tattoo the areola.  WOW, I'll be better than before LOL.  Plastic surgeon says I'll be permanently perky, I'll take that!  Glad to hear you're going to do the Neulasta shot, safer that way.  I'll be here to hear ya whine, you've always listened to me!!!!  I think I'm in about the same place with the lashes UGH!

BETSY -  Hope you're feeling better!

PAULA - Glad to hear your husband is recovering!  That's so scary.  We had a friend who was diagnosed with that last summer, but his started with blurry vision, and worked it's way down his body which I think is the opposite of the norm.  He made a speedy recovery too, but they caught it quickly.  I think that is the key.  I'm happy for both of you, I think you have both paid your dues by now.  Here's to GOOD health for you guys!

CHELEV - How are you today???

HUGS, Dawn

TAMMY - Aren't you lovin being able to say PFC now?  My onc told me I could dye my hair after 3 weeks, if I used natural products.  Guess every dr is different, did he give you time frame of when you could?  My hairdresser works for Aveda and their dyes are plant based.  So.... I'm going for it at the end of 3 weeks.  I'm with you on the fact if it had color it would look like more.  I did the mascara thing the other day - LOL - put a little mascara on part of my head and WOW it did look like a lot more.  I might ditch the bball hat if it had color.  I'm afraid to try the fake lashes too, guess I'll just wait it out.  Raining here outside DC too!!  HUGS, Dawn

Paula, your post took my breath away as I read it.TG you got your husband to ER in time. 

Lena, are you doing ok? Thinking about you.

Dawn, thanks for explaining the expanders I also wasn't sure exactly what you were facing regarding the procedures. Good luck with your port this week, let me know how it goes.

My energy level is beginning to improve, the neulasta pain is ebbing, and my finger is not throbbing as bad today. So I'm grateful and hopeful.  

Re: hair - I have a total of nine lashes, so I'm right there with the rest of you. Although with the heat wave we have had, I love being bald (NEVER THOUGHT I'D EVER SAY THAT IT MY LIFE!), go figure!

Wishing everyone a good week.

Betsy

Hey again sweeties,

First things first, to actually help someone around here rather than exclusively complain about being a wreck ready to be towed to the scrap heap:...

Lindatwo, about your request for info about Tamoxifen and Zometa:

Tamoxifen:

http://en.wikipedia.org/wiki/Tamoxifen

Zometa:

http://en.wikipedia.org/wiki/Zometa

That's all the focus I had this quickly, but I wanted to get at least the basics, and get it to you since you wanted it also. 

Tamoxifen, as you'll see when you read that link, is not an aromatase inhibitor like Arimidex, so if your doctor wants you to go on Arimidex, your situation is different from mine. Are you postmenopausal? If you are, I think that's probably the main reason why your doctor talked about Arimidex. I'm not. I was perimenopausal at the time of my diagnosis in Feb 2009. For the 3-4 years immediately preceding my diagnosis, both the timing and "flow consistency" of my cycles had been getting weirder and weirder off the map from my former near clockwork regular cycles -- but I had not entirely stopped menstruating for a year or more. My longest total skip prior to chemo had been to miss two periods. What small amount I'd read about AIs vs. Tamoxifen is that Tamox is given to premenopausal women, and postmenopausal women get AIs. Since chemo, I had only one period (4/22/09, which was after my first treatment but before my second), but I was told that at my age (47 then, but I just turned 48 in June), chemo would most likely push me into permanent menopause -- and in addition to having had no periods since the one 4/22 and more hot flashes than I can count -- Iooks like my being "only" perimenopausal instead of actually postmenopausal when  I started chemo is why they're treating me as premenopausal. But still, it's been less than a year since my last period, so I think that's why I got Tamoxifen instead of something else.

From what I read in the article about Zometa, looks to me like Zometa apparently popped into my oncologist's head because I have a bone metastasis (left iliac bone). I do have occasional intermittent pain in my left hip from it, but haven't approached anything remotely bad enough in terms of intensity or "constantness" of pain to justify going on Zometa or even to take pain meds -- maybe that's also why he said "eventually he might" want to put me on Zometa instead of saying he thinks I should go on it right away. Linda, I hope your oncologist has no cause to ever think of considering putting you on Zometa.

Anyhoo...moving right along...

Tammy, {{hug}} -- for finishing up your chemo!

About Neulasta shots -- Titan, good you decided to get it after all. I went, without arguing with either my oncologist or chemo nurse about it, to get all six of the Neulasta shots I was supposed to have, and TWICE I STILL ended up with white counts low enough to be well into the danger zone. I shudder to think what those counts would have been if I hadn't gotten the shots. I hated them too, but.....I don't regret having had them, even though I do regret having let myself be talked into chemo.

Chelev, your mismatched earrings story might not be chemo brain -- unless, of course, you pretty yourself up for work in a brightly lit place. If you do, then arrgh, you do still have chemo brain! :-(   {{hug}} I hope it goes away!

I had something sort of similar happen to me 2-3 years ago (before ANY of this cancer stuff had even started with me), but my apartment is dark and dingy even with the lights on, and quite honestly my eyesight had also begun deteriorating from age before I got cancer. Well, my preferred work clothes were simple and professional but comfortable -- enough to be in line with "business/business casual" dress codes. Most of the time that meant I'd dress for work by putting on a "nice blouse or sweater with dress slacks," with knee-his with my slacks (or occasional long skirts) and flats or low heeled pumps for shoes. Most days I'd wear plain old "nude" colored knee-his, but sometimes when I wore my black slacks, I'd wear black knee-his instead, to break up the monotony I suppose. However, I also had some navy knee-his to wear with my navy slacks/navy low heeled pumps and this particular multicolored but with dark blues in it long skirt-and-blouse outfit I also liked to wear to work occasionally.

Sooo....one day I go to work in one of my blouse with black slacks and low heeled black pumps outfits, and, like you, while I was in the ladies room at work (which was WAY more brightly lit than my apartment!), I happened to actually look down at my feet and notice a mismatch -- there I am with a black knee-hi on my left foot and a navy knee-hi on my right foot. If anyone else had noticed, they never said anything to me, and I didn't trouble myself to point it out to anyone even to joke about it. I did, however, from that day onwards, take a flashlight to my knee-his when both pairing them up to put away after washing/letting them air dry, and again before getting dressed for work when I wanted to shake up the nude knee-his routine.

Paula -- you DON'T deserve your cancer, and your husband doesn't deserve his Guillain Barre syndrome either. I'm sorry he got it, but glad to hear the docs fixed him up, and {{hugs}} on finishing your chemo. 

I'm so glad you were feeling well enough 9 days out to have even been thinking about a weekend shore trip with your husband. Wow, what a concept! I'm 9 days out of my final treatment today, and I can't even motivate myself to cook an actual meal beyond scrambled eggs. There's no way in hell I'm ready to go anywhere that's not an absolute necessity (medical visits, grocery store, bank).

Last night I ordered a pizza because I was tired of scrambled eggs, instant hot cereal and microwaved canned soup. Today I'm still exhausted to all hell, and my mouth still tastes like a sewer, but the leftover pizza I microwaved today actually tasted mostly like pizza (wish I could say it tasted half as good when I ordered it and it got here fresh, but it didn't: it was just something to eat that didn't require me to expend energy on cooking or cleaning up after beyond throwing out paper plates!).  Well, I hope mostly tasting my leftover pizza today is a good sign.

I gotta go lie down again now, so  I hope you fellow finishers are beginning to feel better faster than I am, and those of you still on chemo, I wish you as few side effects as possible.

~Lena.

I would NEVER shave off my lovely peach fuzz!  I haven't heard that you need to shave it off...enjoy it...it's been WAY too long without it!  And way to go on finishing AC!  I will be finishing up Taxol on Wed..then rads probably beginning around August 24 so we can talk radiation...and how our peach fuzz is growing! 

Hi all...I'm sorry I haven't been on in a while, but I've been feeling pretty rough.  My anemia got so bad last treatment I got two pints of blood so I could have my treatment and stay on schedule.  I don't think I'm a whole lot better than I was then but I'm trying since my last tx was 7/29/09!!  YEAH...I'M DONE!!  I know many others of you are either finished or finishing up and you have been on my mind everyday.  I've read your posts and seen the problems and successes that you've had and I've been praying for each one of you.  I'm not sure if radiation is in my future, but I have six+months of Herceptin.  Hang in there ladies!

I am thinking about and praying for all of you as we go through our individual struggles....  tx ends and life continues around us. Transitions. Strength and sanity for all, amen....  Tammy

Dawn,

How did your port removal go?

Betsy

Dawn, thanks for the info.- it's helpful to know what to expect. I'm doing better each day out...and loving it. I still have digestive problems but they seem to be improving. Yesterday, marked the first day of my official recovery - two weeks out no chemo!!!  Today, I actually have had some off and then on again feeling in my fingers (YIPPEE).

Still no peach fuzz sightings... I looked in multiple mirrors, different lights...I'm sure it will reveal itself in time. My DH thinks I'm nuts...I made him go from room to room helping me. Ah..maybe I need a magnifying glass!! I'll try that next.

Sending everyone positive and healing thoughts.

Betsy 

I'm 7 weeks from last tx and can finally taste food again. It took such a long time. I am enjoying fresh fruits and veggies so much as I couldn't tolerate anything except chocolate milk and pasta with tomato sauce during the entire tx time. Maybe now I'll start to lose some of that chemo weight. I still don't see any hair growth though.

I'M PFC AS OF NOW!  I told the onc what pfc means..at least the p and c and told him to figure out what the f meant...I'm sure he did...I told him that you don't mess with the Breast Cancer .org sisters!  Ha....Anyway on to radiation 2-3 weeks.. I have my appt. set up with the radiation onc for next Friday...so we will go from there.

Betsy...I hope you find hair soon...try the magnifiying mirrow like Chelev suggested..It has GOT to be there soon! 

Hey Titan, congrats on being done! Did you have the energy to do a cartwheel?

Wow, are we ALL done now?

I'm 2 weeks PFC (um, PFC = Post F***ing Chemo, right? LOL) as of tomorrow -- still not enough recovery time for me. I shouldn't still be THIS tired and spaced out still, should I?

Gotta laugh about suggestions to use magnifying glasses to see if hair's growing in, but I find the old cliche, "a watched pot never boils" is pretty true in my experience. It certainly was true regarding my swollen Taxotere Feet issue! When I first started taking the diuretic my oncologist gave me for that, well, the first few days I'd look at my feet carefully every day to see if the swelling was going away, and couldn't notice a difference, so I just stopped looking for a few days. Then I noticed my right foot was back to normal, but though the left one was still swollen, it was smaller than I remembered from the last time I looked at it...so I stopped looking again until today, and now the left foot is only SLIGHTLY swollen (kind of like my right foot was originally). Cool. I'll check it again Saturday or Sunday at this point -- maybe by THEN it'll be back to normal or close to it, and I'll have something to be happy about, instead of staring at it every day... "whaaat? not yet?"  ;-)

Which means, I'm not even going to bother scrutinizing my horrid head at all. I'll just have to wait for my hair to come back when it comes back (and not look for any signs that it might be on its way:). That should be easy enough, since the sight of myself in a mirror makes me shudder and as such I've been pretty much avoiding the mirror like the plague ever since the pre-chemo buzz cut anyway. The only time I DELIBERATELY look in a mirror, other than while straightening my wig if I have to go out, is when I brush my teeth and look to make sure I "got" everything! LOL. Anyway, I know I'm going to be totally unsightly without a wig for a very long time yet (i.e., until I can retire the wig, which won't be until my hair gets to the bottom of my shoulders), so I don't see the point in making myself depressed on purpose by looking at peach fuzz and brand new half inch or one inch worth of hair. Only one inch of hair isn't going to look any better on me than bald.  :-P

~Lena.

Titan- Wishing you minimal SE's from your last chemo and N.shot. Hang in there, it's almost over. 

I think I'm with Lena on the hair front. I have not worn a wig thru this entire process and go without a hat at work. I figure if most of the men I work with have shaved heads, what's the big deal. I guess I'm weird but I sort of liked my bald head, not that I would have ever shaved it on purpose! BUT....the look I really hate is one half of an eyebrow and no eyelashes with a bald head. BTW- thanks to all who wrote about fake eyelashes...you saved me a purchase. I guess I need to start using eyeliner or something and drawing in some lashes. But at least I'm PFC!!!

Congrats to all!  Is everyone done?

~Betsy

I am so proud of all the April chemo ladies - I think Titan is the last one in the group - but please chime in if you are still getting tx from April.

Titan, woo hoo, big hug and yes, you are now PFC!!!!  Even if you didn't do a physical cartwheel, you were doing them in your mind.  The rads sim is very simple, just be prepared to lay for a long time with your arms over your head, not moving, having EVERYONE and his brother coming in to look at you, clinically, of course, and then you'll be marked up with sharpies and possibly your tatoos (if they do that at your radiation center).  Rads is so much easier than chemo, once all of the setup and everything is done - you are literally in and out in minutes.  Just remember to moisturize tons - aloe vera gel, aquafor, whatever they tell you to use, use lots!! 

Betsy, the lashes should start fairly soon - if you use your magnifying mirror (I LOVE mine), look at your lash line to see if you can see the tiny dots where your lashes grow from - you should start seeing little stubs.  I drew on with eyeliner, because the false lashes looked ridiculous, and I couldn't put mascara on the two I had in one eye, and one in the other eye.  My brows grew back to the original shape they were before bc, I was hoping they'd be a little thicker, but I guess all the years of overplucking ruined them.  Oh well, there's always brow filler!

Congrats to everyone, and I hope you are all feeling well.