Starting Chemo May 2008
Comments
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Robin~ believe it or not the swelling does go away.... eventually. I fnally found my ankles again.
Found out 2 days ago where my fever has been coming from. I have strep infection in my tranny boob. It spread across my chest and up into my neck. Doc put me on super high antibiotics for 10 days which cost $260 after insurance. We didn't have the money to pick up a full prescription and called the doc back the next day. Told me to only take 3 days worth and he will switch it over to a cheaper one. Started to get ready for bed last night and opened my bra and it was full of liquid. Found where the infection was at. It's draining like crazy but I do feel a ton better. I have another appt on monday with him to check things out and then on friday back into surgery to fix my split open spots. Can somebody tell me whose idea was this anyway??? Oh ya..... mine. On the lighter side of things..... I've lost 21 pounds so far. Lack of appitite will do that to ya.
Hope everyone is doing fabulous! XXOO
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Jen - ya know what pisses me off? That you've had problems with the new girl for at least 2 weeks (excessive swelling, unexplained skin blisters, persistant fever) What caused your PS to finally culture that new breast? Hurray for your body spewing out that nasty stuff that has no business taking up residence inside you.
Never - I have never likes rollycoasters! Don't like much waves of emotion either.
Funny story - I over heard two of the surgery center nurses talking about the breast reconstruction case done 1/11. How they kept hearing giggles, whispers, and a fart or two but there is no way that could have happened because it was just the two of them setting up the room for my case. I kept you secret girls! So glad you made it!
Today is my 5th post op day and I'm not feeling so great. Did sleep well during the night, was trying to keep my feet elevated on a pillow which required sleeping on the bed. Well, sleeping on the bed requires a lot of mucsle strain from muscles already insulted by the TRAM. After the 3rd failed attempt to get comfortable I went back to the recliner. Have been nausous all day, think I still have a fever (DH out right now picking up a thermometer). My belly hurts much more today but I'm blaming that on insisting on trying to sleep in a bed last night.
My dear friend, Debi, had her lumpectomy/bilat reduction 1/7 has learned the margins were not "all clear". Think she is opting for a mastectomy with immediate recon. After seeing what I am going through (didn't tell her about your saga Jen) she wants nothing to do with the TRAM, is leaning toward a micro surgery. Problem we gals here in Colorado Springs face is there are only 2 in the state that perform these delicate procedures. She is willing to go to Denver, to NOLA for the top dogs to operate on her. Back in '08 when I had the same decision to make my PS said that he couldn't recommended the 2 in the Denver area, he would be willing to send me to Mayo. I just did not want to recover away from home so the topic was not discussed again.
Tummy upset - gotta go.
Love to all
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Robin try this in bed. put lots of pillows behind your back and prop up that end and then put some under your knees as well, and feeties. I have to be propped on both ends or it just makes me ache. Have you hit the "OMG why did I do this stage yet?" I see it about every other day, hopefully it will go away soon. Been wanting to call you and cant find you number anywhere. Get comfy and take more meds if needed. I'm right there with ya in more ways than one :O)
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Get better
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I put up a new pic with college girl (Kathryn) on Facebook- its not in the right format for this sight so I havent updated here.
Younger daughter, Valerie, is signing her National Letter of Intent for her softball scholarship Monday morning- Im having a relaly fun weekend!
Still praying for our surgery girls to feel better soon!
Kristy
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Jen and Robin, I am wishing that instead of the cold and rain (or snow) of winter, you could be sitting on Sue's porch, enjoying warm, sunny days. I'm sure you would heal more quickly. Maybe we can get Kerry to rustle up some summer weather and send it over here for you.
I want to give you both some soft, gentle hugs. This suckiness has to quit. It's bad enough when you go through stuff like this as a part of chemo or tumor removal. But, when it's the result of a surgery you chose to have, to make yourself look and feel better, well, ... where's the justice in that???
Like eddie said... get better, okay?
otter
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Sue's Porch - check
Kerry's summer weather - check
an end to suckiness for all - check
gentle hugs - check
our awesome children doing awesome things - check
being alive and feeling the recovery burn from restoration surgery - check
Much love to each of you............
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I'm having an odd experience today. Instead of it getting brighter this morning, it keeps getting darker! We are expecting a several day rainstorm, which is good because we NEED it!
My other odd experience is that my older DD is playing around with her Mii (her "person" on the Wii) and made her bald and eyebrow-less. So the younger one comes in, clearly distressed, and says "Katie is making her Mii have breast cancer and I don't like it," One part of me wanted to laugh, but another part was very sad that those things had become the "norm". <sigh>
To Robin & Jen - Feel better, feel better, feel better!!
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Just when you think they can't come up with any new combinations of weather items, we have frozen fog today. Try saying that 3 times fast.
Hope no one else has frozen fog or any other kind of weather that you don't want and everyone is feeling better today. Warm, from the heart, hugs to all of you.
Kerry - I would like to place my order for some lovely summer weather from Australia.
Kristy and Robin - you should both be so proud of your children, as should Eddie. A scholarship is a great thing. Love the FB pic.
I put a picture of my brother and SIL on FB from his military ball. He had to coordinate the whole thing for over 500 people. I am so proud of him.
We are starting a new endeavor. Riley is going to join 4-H. We start off with a skating party this afternoon. We don't have any animals, but it isn't required. She wants a real live hedgehog. Where does she get these ideas?
Jen - I know you are wondering why you chose to do surgery, but I bet in a short amount of time you will conclude that you made the right decision. We are here through all of the decisions. Just say the word and I will pass you another diaper or anything else you need. Same for you, Robin. Let us know if we can do something for you.
Enjoy the 3 day weekend! Julie
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Hi girls! Yes...the weather in Tasmania is absolutely perfect (although we are having a cold snap atm), although in other states the temperatures are just horrible..I honestly don't know how people can bear it! I have been reading up on vitamin D and have actually got quite snakey about the lack of information on this subject over the years (decades?) We have been comprehensively warned for 30 years about the dangers of the sun here in Aus...and guess what? An almost perfectly linked rise in cancers (especially breast cancers). Well feck!! What's going on there??? Add childhood and early teenage depression stats off the scale ('No hat, no play' and 'Sunsafe Schools') and explosions in screen time. No sun!!!! More cancer!!! How did this happen?? Anyway, I'm on the supplements and will get some more heavy-duty advice re this. Wouldn't it be insane if taking mega D3 supplements gave me a 'better chance' than femara ROFL!!!! New-boobers!! How are they? I hope you've passed through that awful 'WHY, WHY, WHY?????' stage and are now secretly planning how to go braless in a beater
next summer. I had the second mastectomy & double recon...and when I woke up the doc told me I could not use my arms for ANYTHING. Hmmmm...sitting up in bed...lying down in bed...Gets kind of harrowing. But REMEMBER!! All things pass..like pain and floods of yuk, and self-recrimination and flash-backs and rollercoaster emotions. What doesn't pass is this solid little crew. You know, every time I say, "Feck it all!!!" I think of Randie and I miss her. Weird.I never 'met' her but I miss her like a..well..sister. Thinking of you all and sending you sun-generated D3 supplements! I've even got a tan this year..(Feeling a little vain about THAT one..) xxx -
Jen - no OMG, WTF did I do this for, yet. Although it did cross my mind wether or not I should be so concerned with my body image as to subject myself to something like this. YES was my answer so I dropped it. Due to your exteneded recovery, infections and delayed healing I certainly understand why that topic enters you mind. I'll try to call you tomorrow.
Julie, from what I read on here and FB, all of us have remarkable children!. Have fun with the4 H venture! Congrats to your BIL!
Cris - not sure what emotion the wii mii experience would have provoked in me. "Santa" brought our family a Wii for Christmas. 20 yr old DD made my Mii, keeping the glasses I acquired after turning 50 but ditching the chemo induced grey hair. No complaints from me. DD was a little mother while I was undergoing toxic hell, always an encourager whether I be bald, wigged or curly gray 1/4" long.
Jen - thanks for the many post op suggestions to make recovery easier. The multiple pillows on the bed have made sleeping much more comfortable.
It's 3:35 am, needed to use the girls room and to empty my drains. Figured there is no time like the present to post but can't make this any longer cause the eyes are nodding off.
TO ALL - have a Marvelous Monday!
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Does anyone else have those times where you just want to sit and cry and are holding it back and out of the blue, something happens to pull you out of it? Well, last night I was sitting on the edge of the bed, hubby had just helped me get padded back up. I was depressed, on the verge of tears (yet again) and wishing for a better day... when our phone rings. On the other end of the line was this cute giggly voice that brought me out of it, rock called me. I don't think she could have had better timing. I definately needed those laughs. Felt so much better after the call and had a good nights sleep to boot.
Had another doc appt today. I feel like I live in that office right now. He cleaned up some edges of my second split spot and told me to stuff gauze down in it twice a day. That will be interesting I'm sure. My fever has cleared up so far and I feel alot better over all. Still have a few leakies, the pampers company needs to write me thank you notes for keeping them in business right now. Looks like friday around lunch time I will be getting sewn back up. Doc said it will take less than an hour so thats good. I feel like friday is my light at the end of the tunnel. I tell ya, I don't think I could handle much more at this point. I've seen it all, done it all, bought the damn t-shirt and it shrunk in the wash. I can't wait for the day he says I can soak in the tub, I have a bathbomb calling my name.
Need a nap, squishes and slobbers
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Hahahahahahhahhahahha Jen! You made ME laugh. Yes..you HAVE done it all. It's all up from here (as distinct from all uphill!) I'm sending slobbers and stuff right backatcha, and an orange ricochet to make you laugh enough to make your new tummy ache..in a GOOD way! XX
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This is stupid, and I know it is. Most of you went thru chemo the same time i did. I am still terrified of mets. How have ya'll fared and what, other than my anti meds can help me thru this. I can't talk to family because they will either get scared, youngest, or tell me not worry. Therapist had a stroke. now I have to break in a new one. Surgery was in March of 2008. Last chemo Oct. 2009. Not taking any horomone. Tamoxifen had bad side effects with me. I have "Sheehan's Syndrome" so therefore my immune system is compromised. I think that scares me even more.
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Observation of the day. Was gifted a new cute teeny belly button with the trammy. My old one had gone thru having a baby and weight gain(s) and a few surgeries and was just the right size to get that pointy finger in there and swish around soap really good. You could get lint out of there and make is all squeaky clean. This new one however....... I'll be lucky to get a pinky finger in there to wash it out. :OP
dsub~Best way I can sum it all up for you is this song "One day at a time, sweet Jesus. It's all I'm asking from you".
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dsub, welcome. Feel free to nestle here as long as you wish. We have unlimited hugs and comfort to offer, and shovels to ward off jerks when necessary.
I had to Google "Sheehan's Syndrome" (was thinking "Cindy Sheehan", which was ridiculous...): http://www.mayoclinic.com/health/sheehans-syndrome/DS00889 . I don't know how that would affect your immune system, though. Stress would be a problem, so I assume you're being treated/monitored by an endocrinologist to be sure you have the appropriate replacement meds (steroids, thyroxin, etc.). In any case, I agree that the fear of mets can be unnerving. There's always something -- a recheck, an upcoming mammogram, a lingering SE from chemo -- that serves as a reminder that we're not out of the woods yet; and maybe we'll never be.
But, we have to go on with our lives. I get better each day (maybe each week) at putting aside those nagging fears. I think of it kind of like this: What would we do if something horrible happened to someone we loved, but after an appropriate grief period, we had to go on living? How would we do that? What would we do to cope?
I think a BC diagnosis is kind of like that. It's a terrible thing -- not just the treatments (loss of a breast, chemotherapy, loss of childbearing capability), and not even the immediate fear of dying... but the lingering fear that it's not over. Perhaps it's never over.
From what I've read, people who go through horrible personal tragedies do re-live the experience every day, for awhile. After some time, though, they think about it less each day. Finally they are able to push aside those thoughts and mind-pictures... not that the experience is any less awful, but they're finally better able to control their thinking about it.
That's what I think we do. As with those panic-driven days right after we receive the dx, when we look for something -- anything -- to distract us from the fear, we have to do the same thing in this long-term follow-up period.
I think the medical community is beginning to realize how important this follow-up period is to us, and how necessary it is for them (our oncos) to help us through it. My cancer center is starting a "cancer survivors" clinic, which will provide long-term monitoring for women who've gone through 5 years of intensive post-dx follow-up care. My BS already mentioned that I'll be eligible once I reach that 5-year point. I'm looking forward to learning more about it.
Jen. Oh, sweet sister. That's a virgin belly button. A great gift from your surgeon. You'll be able to clean it with a Q-tip, same as you did before that baby and those weight-gains and your surgeries stretched the other one out of shape. A Q-tip with baby shampoo, or maybe with Dial soap. It will work out just fine.
I washed my car yesterday, by hand. Hose, bucket, sponge, soap. I needed a step ladder to reach across the roof. It was a beautiful, warm day, so there were no more excuses available. But, today, I'm paying for it. I think every bone and muscle in my body aches today (despite all that calcium and Vitamin D I'm taking). Time for some hot chocolate, I believe!
Hugs to all... with soft, squishy ones to Jen and Robin--
otter
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Hello May Ladies,
Today I had my 1 week post op visit with my PS. Breast drain removed. Both incisions healing well.
Jen, I understand completely about the swelling of the TRAM breast. The day of surgery I can vaguely recall touching my new breast and feeling amazed at how close to "normal" it felt. Over the next few days it became larger than the other and firm to touch. Doc says it won't swell anymore at this point. Also says somewhere in the 6-8 wk point post op the swelling recedes, says most of the swelling is gone ~ 3months post op. (interesting tid bit of info: an MRI tech who had had a tummy tuck was followed monthly with MRI for close to a year; intra-abdominal swelling was evidenced through 8 months following the procedure; the TRAM is much more invasive a procedure)
I asked about a binder. He doesn't use them with the TRAM for the risk of interfering with blood supply of the flap. If I wanted to wear a panty girdle for abdominal support he thought that was fine. Then he proceeded to tell DH and I that my abd. is at its weakest point in the recovery, how it is held together by three strategically placed sutures(and a few other things), and how crucial it is NOT to over do it even if I am feeling better. Think I'll check out the selection of girdles at JC Penney online, otta be fun using that with two drains. HAHAHA...shape wear is what they are called. Perhaps I should get one with padding for the behind!
Guess I'll post this now and wish you all a good day.
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Jen-I know exactly what you mean. There are days when I just want to sit down and cry, for no apparent reason, but I don't because I don't want to feel "weak". Then, something will trigger the tears and I can't stop it. Sometimes I feel like I have to be "strong", because that is what the people around me expect--there are days that I don't want to be strong. I usually bame it on the tamoxifen and lack of hormones. Hope that you are feeling better today-think of you a lot.
Robin-glad that you are on the mend. I really admire both of you-I can't stand the thought of anymore surgeries.
Off to work--Love to all
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Otter you almost made me jump thru the screen, I thought it was robin who was out washing her car! LOL
Robin~ I'm surprised you didnt get a binder. It does feel alot better to wear one plus it held my diapers in place when I sprung leaks. My doc said it helped keep the skin close to each other and heal better without gaps. But on the other side I had more to move than you did. This binder goes from my hips all the way to right up to below my boobs (boobS as in 2! lol)
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Thanks otter.I just didn't want to think I am totally crazy. Everone around me justs" they cut it all out right?". I will try each time I think of Cancer to think of something else. Maybe I can retrain my brain from all the chemo and worries..
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Four month follow up was today. Its possible my body has worked its way out of menopause, so he is running the FSH labs again. If they come back pre-menopausal, I will be put on Tamoxifen and a Zoladex shot once a month. I was doing just fine on Arimidex thank you. I really don't want to change my meds and frankly, menopause was a huge benefit out of chemo. grrrr
Of course I don't want to be on the wrong meds, but damn it all.
To top it off (and my husband got a huge laugh out of this), my Onc asked how long its been since I've had a regular check up with my PCP. I say.... a very long time. He gives me the look and says, you should have a check up. I say doctors deliver bad news but fine I'll schedule it. (ok...there was a little childish pouting/behavior going on here). We aren't in the door more than 5 minutes and I get a call from my PCP's nurse. Dr. Onc called my PCP and let her know that he told me to schedule a physical. I'm sure she was a little suprised when my initial response was "What a turd." And then as my husband gets the gist of the call she can hear him laughing in the background. I'm still not laughing.
The grouchy one,
Adrienne -
Adrienne, grouch and pout to your heart's discontent! We are grouching and pouting right there with you. We are all totally over doctors and appointments and follow-ups and blah blah blah. I saw my onc in December and he told me I should really see him every 3 months for a couple of years. I hadn't seen him for a year!!! Hmmm...time flies when you're having..um...fun? Just a quick fly-by tonight. Love y'all, especially you dsub. xx
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Everything went very well today. I am all zipped back up and patched. Ended up with 2 new drains though. These are different than the last ones, I don't drain them, they are open on the end. Feels nice to not have those huge gaps anymore. Saw my Onc yesterday for my 3 months checkup...... now I'm anemic. He thinks I must have lost alot of blood during the surgery and wasn't informed. So now I am on iron pills for a bit to bring it back up. If it ain't one thing it's something else. :OP
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Are you still in Huggies? Probably have to use something to catch the stuff that oozes out of those new drains. Are they any less uncomfortable than the J-P drains with the bulbs?
It must feel soooo much better to not have those gaping incisions anymore. (Oh, you said that.) You are healing, though .... slowly but surely. Sending you gentle hugs, {{{{Jen}}}}
Adrienne, your onco is sneaky. I don't want to trade with you.
Hi, kerry! Hugs and smooches to all...
otter
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Jennie,
"If it ain't one thing, it's an otter."
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Purrfect, Rock! Do otters purr? We need another science lesson on the sounds of the otter.
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AWWWWWWWWW cute pic!
Doing much better today. Got a few owies but nothing like the first surgery. Just glad to be all sewn back up. These drains are just little flexible rubber tubes hanging out, nothing to drain, no bulbs on them or anything. They are just open and dripping. They are coming out on thursday hopefully. I'm hoping to get back to driving at some point this week, I want my freedom back and to be able to get back to work some.
Robin~ how you feelin daulink? Getting any sleep yet?
Thank you ladies for carrying me thru this ordeal. there is NO WAY I would have made it without you. My love to each of you!
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Oh! Oh! Otter buddies! We can each have one, okay?
otter
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Yeah for feeling better and no gaping incisions!
Boo that the body may have worked its way out of menopause. That is a fear that I have - I agree that it was the one benefit to come out of chemo.
I spent 4 days in sunny Scottsdale cheering on friends that were running the Rock-n-Roll 1/2 marathon. It was a bummer that I was not able to run (still battling the planter fac issue), but I cheered on two friends that cheered me on through chemo.
Although I have not posted in awhile, I read this site daily via my blackberry. You are always in my thoughts - ((((((hugs))))))) to all!
Huge bummer that the Vikings lost!!!!
Jean
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Reading, reading...okay, caught up.
Jen - So glad you are FINALLY healing and making real progress. Long time coming...
Robin - Hope things are coming along for you, too.
I get to see my rad onc twice in the next 2 months. Last fall I was supposed to get a right-side only mammo, but somehow I spaced it. Or maybe it was the tooth thing, a PET scan and Life that got in the way. Oh well. So I see him Tuesday, sans mammo results, mostly because I had the appointment already made but partly because the girl on the phone asked me if I had seen anyone in the last 6 months. I guess my off-guard "Ummm" gave me away.
I couldn't be mad. I know I should be seen every six months or so, still it's hard. I've found if I get bugged a little bit, I'll follow through with making an appointment, etc. But left to my own devices, well, that's another story.
Hugs to all!
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