Last day of chemo. Breast reconstruction?

I'm done tomorrow! Hopefully forever. I've made 2 cakes. One for the oncologist and one for the chemo nurses in the infusion room. I'm outta there.

New boobs time.

Well, It's nearly been a year since I've had my left breast cut off. I've endured 2 rounds of adiramycin, simple mastectomy to the left breast, 38 rounds of radiation, and 12 rounds of Taxol. If that doesn't beat the hell out of my angiosarcoma I'm not meant to live. If it comes back I'll chalk it up to inferior genetics, bad luck... and wander off into the Mojave desert to die. No joke.

I can get reconstruction (implant) in February. Huzzah! So here is my question... I've actually found very little information about implants post radiation. Evidently a lot of doctors say no. I understand that the musculature and skin is less elastic and has fibrous banding making implants do crazy things... from capsular contracture to actually being pushed through the chest wall (OMG!). I'd love to hear from anyone who's had the experience (good or bad) of implant reconstruction post radiation.

I really want to ditch the breast form. I also don't need more body drama... If its more trouble than it's worth I can wait 2 years for a TRAM flap... though honestly that sounds pretty nuts too.

Thoughts?

-Trace

Beginning of the end

So, I'm almost done with treatment! I just had the first of my last infusions today. I have 2 left after today. I'll be done on the 15th. I'm so... happy? I mean I am happy, but its weird to think I just wait now... for it to come back- for it not to come back. I don't think that feeling of impending doom is ever going to let up.

Also my oncologist agreed to give me MRI's now. I am happy about that, they take longer but they're not radiation. I have been reading a lot of studies about the over prescribed usage of CAT scans and linking them to cancer. It's a giant freaking x-ray... we know that's not good. Considering everything. I'd like to not turn into Chernobyl anytime soon.

I've decided to put together a charity art show for sarcoma research (sorry BC ladies) I got a missing boobie but sarcoma is an underfunded under-loved area of cancer research, and it's what I have. My oncologists eyes light up like flashbulbs... he was telling me about tax codes for charities, guest lists and that he wanted to give a speech and buy art. RIGHT ON! I figure I need to do SOMETHING in appreciation of not dying. I'll make a boatload of cash for research and patient care. I have a LOT of friends in the industry (more famous than myself)... I need help coming up with a theme for the show. I want the different styles of art to have a common theme.

Aside from that I think I might teach an art therapy class. Being creative is a great way to unload some of the fears you have roiling around your brain.

I think nude modeling would be cool too... got body issues? What better way to get over them than to show them to a bunch of discerning art students? I think it would have been neat to draw a cancer patient in life drawing when I was in school. So much I wanna do now that I am nearly done with cancer treatment.

Meeting new people with BC

So I actually met a real life person from the BCN! Her name is Peggie (pegLove), she's always posting and keeping us up-to-date on here with her wonderful blogs. I had the opportunity to go visit her while she was recovering from her lumpectomy.

As most of you know anesthesia can to uh... do bad things to the innards. Having had 3 surgeries and lots of chemo... by now, I FEEL the pain if you know what I mean. So, I was able to brig over the only thing I've found that will get things... moving. Oxy Powder has got to be the greatest product on earth. I mean I had my Dr's prescribing me stuff for weeks trying to get me to go. All of which either did not work or caused me the most excruciating abdominal pain I've ever experienced. No fun. I remembered using the Oxy Powder (oxygen based colon cleanser) before and thought... oh I have some extra! I'll try it! Sweet sweet merciful relief ensued. For like days... I swear I lost 5 lbs. So yeah... paying that forward for a breast cancer patient in need is where it's at. I have decided pooping is very important.

Aside from the helping the needy I also found that Peggie and Dylan were quite the sweethearts. I came over at 7ish and I am positive I overstayed my welcome... I do that. Sometimes I find it impossible to shut up when I'm nervous. I wasn't always this way. I have a Canadian friend who is teaching me bad habits! I met Peggie and Dylans little dog Luna, their two impeccably hair-do'd parakeets and got acquainted with their very cute house. It was nice to be able to talk to a young person who understands what it is like to have cancer. I dare say that is different for us younger women who are fighting this disease. We've not had children (and may not be able to after chemo) and have a different perspective on what the future would have held for us. I found that Adam and I and Peggie and Dylan have similar world views, similar taste in mirrors, and similar taste in procreation. As in neither of us want kids. In fact I scored a very amusing book from Peggie about the joys of un-parenting. Peggie was ever so sweet and gave me a necklace to wear while beating up cancer as well as loaning me a book. I feel woefully shameful that I didn't bring a gift for her... do poo pills count? I hope so!

I have also talked with Nichole from here... who is also very sweet and is having a hard time recovering emotionally from all of the rigmarole that we cancer women have to deal with. It's really nice to be able to talk to someone (be she face to face or in Florida) and help them get through a difficult patch. I'm never so happy as when I can help another person. We are left with some very ugly aftermath after losing breasts and our confidence. I was able to keep mine save for a short spell of getting used to my new body. My perspective on life and body, I feel, are unique and seem to be helping with the women who've contacted me. I just want people to be happy... and despite having a very scary and trying disease, I feel you can be happy... preposterously happy, as I am.

I'm happy to have met you Peggie, Dylan and Nichole! You're very special people.



-Trace

I'm a fatty!

I have 4 treatments left in my Taxol torture after yesterdays infusion. Yayyyyyy. I can't even tell you how happy I am to be done with this crap after a year of treatment now. I really hope this is it... that nothing else has to happen to me.

My blood counts are getting looooow. My white count is great though, its up at around 5.6 all the time. It doesn't fluctuate very much. My RBC Hemoglobin and Platelets are flagged as low. They are in the 2's.... if they go below one I have to stop treatment until I start producing more blood. Or get a transfusion. Yipes! Do not want. Any suggestions on making more bloods? I can't take iron. I just want to get to the end of this crap without delay.... and leave 2009 (the worst year of my life) behind me forever.

The hair. I know I complain about not having any. So I got bored today at work and gave myself some celebrity/movie hair. Enjoy!

I hope you're all doing wonderfully.

Namaste,

-Tracey

Radiation recall and the fear of the big C

Thus ends my 2nd cycle 6th treatment in my happy fun time Taxol treatments. Monday approaches and I get to let my blood bounce back and try and squash my extra 15lbs of ass into a Halloween costume that steroids have made WAY too tight.

I have the most fantastic acne. I feel 17 again... oh joy except with significantly more fat, no hair and crows feet.... oh yeah and missing a boob. Can't forget that part now CAN I?! All in all I am feeling pretty meh about this whole process. I wake up and give cancer the proverbial finger and start my day by trying to hide my blotchy skin and my newly acquired back fat. This is no easy process. I am so swollen that I can barely bend my fingers and toes. I have dimpled knuckles and chin fat. I am starting to look like a hairless cherub and I am NOT digging it. I'm indignant.

So having the steroids make me heinously fat is real fun but the worry at the heart of the issue is that I am having some pretty severe pain in my left side. It is a burning stabby, itchy pain... quite frankly it is the same pain I had when I still had the tumor... its just in my ribs and the muscle under my clavicle. I have a nagging feeling that I have a real problem going on in that side of my body. I think the cancer is back. My oncologist seems to think its radiation recall. But you know how sometimes you just know? I have that very very bad feeling... a bright red flag waving in front of my subconscious mind saying "Oye! Big C is back and its going to be much worse this time". I keep having nightmares that I am dying, but I can't die here in my house... the landlord would have to tell prospective buyers that there was a death in the house and it would effect the resale value. So the rest of my dream I am stuck dying at my Dads house in Arizona and no one can see me because its too far away. Yeah, dreaming about your own death is not much fun. I could seriously do without that.

I just feel crappy today and I feel like I am doomed. I just wanted to tell the ether that I'm scared.

I'll go back to my regular scheduled programing of being excessively "brave" now.

Paper Dolls

Hey ladies!

I was recently asked to write an article on sex, love and cancer... sounds like soap opera huh? Anyway It's a pretty cool piece and might be an insight into how many of us feel post chemo and surgery. Mangled... ugly and freaked out.

I illustrated a cancer paper doll. If you're ambitious you can cut her out and put the sexy bedroom outfits on her. At first this was the only way I felt normal in front of my boyfriend. I eventually got used to my new topography but it took some time and a lot of self reflection. I had to give up that I no longer had a nubile 26 year olds body. When you quit wishing for things you do not have there is a freedom that comes with it.

Here is a link to the article at http://today.msnbc.msn.com/id/33213581 and will be followed by a feature on breast cancer for the Today Show website Thursday. Please create site traffic and share your thoughts on love and sex in the comments section. There are women we can help with our experiences.

Here is the illustration. I hope you think its fun.



Namaste,

-Tracey

Dear Hair

When I was fist introduced to the wondrous world of cancer the first chemo I received was adriamycin. From experience most BC patients get this super fun drug and have given it the nick name... red devil. I think that's a fairly apropos description of the stuff. That big red bag of awesome made my hair fall out at 2 weeks on the dot. Great massive clumps of fur came out with little to no effort. It was pretty traumatic and shocking. I'm not sure which was worse the hair loss or the projectile vomiting the horrific body aches or dead taste buds. Total hair loss is a trip. I hated it. I bought wigs... very nice ones and even today people at work haven't noticed that I've been sick. I consider this an awesome thing.

Some women like to go commando proudly displaying a bald head to the world... saying "yeah, I got the cancer what are you lookin' at" Others wear pretty head scarves and big earrings. I prefer to look like nothing is wrong. I've found that I really hate pitty and I really don't want to be treated like a sick person. Lets face it... people are freaked out by sick people- I am, and I have now BEEN a sick person.

I only had two rounds of the red devil before I was tossed into surgery. When the pathology reports came back in that my removed tumor showed "negligible necrosis" I was pretty upset. Having just gone through one of the more nasty chemos to find that my tumor was chemo resistant really sucked. You expect something that toxic to beat the crap out of cancer and when it doesn't what hope do you have left? After I healed from the mastectomy I had 36 rounds of radiation. My skin resembled cooked bacon and I was particularly grateful that the mastectomy left my chest numb. The only parts of radiation burn I suffered was in my armpit. THAT I most definitely felt.

Now that my tumor is out and I've had radiation clean up and a scar boost I was left with a hard decision. My oncologist asked me to do 6 months of Taxol... to be given weekly. I get the stuff 3 weeks in a row and get a week off for my blood cells to recover. 6 months... that seems like forever- 24 rounds of a toxic agent. The hard part of the decision was this: Since the last chemotherapy did not work... and there is no longer a tumor to measure how well the chemo is working... I feel that I am given Taxol blindly with no way to know if its helping or harming. That's a scary thought to me. It's like a crap shoot. Oncology is about as refined as Russian roulette. And then you wait. Wait to live, or wait to die. That's what my life has become.

I digress. So, I have done 3 weeks of Taxol, and I just finished my week off for good behavior. My oncologist thought I might be able to keep my hair but it turns out that was wishful thinking. I was so excited when I went past the 2 week mark and nary a hair had dropped from my head. It took 3 weeks. So my hair is very very thin now, I look like an old man with mange. It hasn't completely fallen out yet though. The hair loss from taxol is not like it was with Adrimycin total and complete. It's taking its sweet time. Torturing me slowly instead of just falling out. It's depressing. The first time it fell out with Adria it was a shock and scary and horrible... this time is just sort of like... alright, guess my hair is falling out, better go buy some more hats. It's not any easier the second time you lose your hair. I am just more resigned to it I suppose. Life needs a fast forward button. I hate "treatment".

Dear hair,

I like, REALLY miss you. I'm expecting to tell my docs to suck eggs in about a month or so- you can come back after that. I was thinking... I know you were all curly after the last chemo... but seriously... no more of that. I hated the curly look. I have no idea what to do with you and I am not down with having a fro'. Please remedy this when you grow back in.



Sincerely,

Fragile ego.

Naked Mole Rat

Oh chemotherapy... you foul bastard. How I hate thee.

So, I had my third chemotherapy infusion this past Tuesday... I am getting taxol. But unlike you poor women that have suffered through it I am getting a small dose weekly instead of a big one. No neuropathy yet... and mostly uneventful and painless until about 4 days after the infusion... then I am visited upon with some pretty shady bone pain. Nothing really makes that feel any better.

My doctor was telling me that since the taxol is at such a low dose that I might not lose my hair... but not to count on that assessment of course. I was sort of hoping that I could keep my ridiculous looking jew-fro for a while longer. Chemo has made my hair so curly that its largely an unmanageable afro. Still, it was my afro. I am not looking forward to having to wear wigs again. They're all fantastic naturally but blarg...! I'm not sure if this is me specific but the first hair to go is the kind that lives on my girly bits. Followed by my underarm fuzz and then finally... my head. Does cancer treatment never end!?! Plus my steroids are making me a fat ass. There is no dignity in any of this.

So I hate chemo. I think its the most counter intuitive bullcrap ever. The only thing standing in your corner fighting cancer is your immune system. It makes no sense to me to knock your immune system out. Seriously. So stupid... so much of the new research coming out are all about immune boosting... trying to leverage your own bodies defenses against this shit. But of course... not for me. Or most of you for that matter. We get the old stand by that literally hasn't changed much since the 1950's.... save for better side effect minimizing drugs. Thanks guys. Thanks.

So I found some articles that scared the bejesus out of me. http://www.topix.com/forum/com/bmy/TE8I4FMR11N2GFDDU its basically about how chemotherapy (taxol specifically) creates these great pathological results in which the tumor shrinks and breaks down. But the overall circulating cancer cells that are veritably dumped by the truckloads from the shrinking tumor are alive and throwing parties somewhere else in your body once taxol treatment terminates. Nice huh? So the overall survival rates are not really survival rates at all. Fancy that. I think we get better despite these barbaric treatments that leave us broken and altered for life. I guess one can make the argument that uncomfortable life is better than no life. But I can tell you that If this crap I have comes back.... I am moving to a tropical island writing a strongly worded letter to some big pharma companies and then going out in a blaze of awesome.

I'm angry. Very angry. I'm not sure how in the hell I am supposed to "get through" weekly chemo treatments for the next 6 months of my life. I've had 3 and I am about to throw my oncologist out the window.

All About the Bewbies!

Okay ladies... just because we are missing some boo-bees does NOT mean we are not still sexy... or interested in being sexy. I may be on the really young end of breast cancer at 26 but not EVERYONE that gets breast cancer wants to wear bras that look like they were shaped together out of waffle cones! I cannot imagine being 56 and wanting to wear ugly bras either. If you're having radiation and cant get reconstruction right away for whatever reason... the prostheses are HORRIBLE. They're heavy, squishy, don't cover the right tissue, pokey, sweaty, stupid shapes not made for women that have concave chests after a mastectomy.

Step one... dear boob and bra designers. These are boobs. They come in several shapes and sizes. Secondly... here is a graphic depiction of what I look like... other women may vary of course but the anatomy of a missing boob is pretty predictable. It's sort of concave... bewbage used to be there... but now it is not. Why on earth are you designing prostheses that don't fit our shapes?

Thirdly... the bras. C'mon. We're done wearing the anti-sex 2000. Amoena and other bra makers, breast cancer patients aren't puritanical prudes. Women need to feel good about themselves... especially with all that we have to put up with with having breast cancer.ugly I drew all of these for you women on here. I hope you enjoy them. I hope they make you laugh at our shared plight and brighten your day.



-Tracey.

Cancer shmancer! a 26 year olds perspective

So, I never have joined a cancer site before... mainly because I don't really have breast cancer per se. I have some other weird cancer called angiosarcoma which happens to have shown up in my left breast. So where do I fit in? No one ever gets angiosarcoma so there aren't really any support groups for such a rarity. However, the results of having angiosarcoma in the breast is similar... I've had a mastectomy, I've had radiation, I've had chemo... and I started chemo again last tuesday. So here I am, missing a boob, scared, angry, young (Im 26) and tired of having no one to talk to. There will be differences between us but I think how cancer leaves a person is universal.

So, hello everyone. I'm Tracey. I was diagnosed with a rare and nasty cancer in January. I've kept a very cool journal for most of that time. Im an artist for Disney so drawing in my book and having very colorful entries is a way to keep myself sane. I've decided to take my diatribes to the internets. Beware! I might post some images from it on here!

I think many of you (as I have discovered for myself) sometimes its hard to talk to friends and family about how you REALLY feel. My outward persona to everyone is one of sheer dogged determination to kick cancers ass. And it is... but no one besides maybe my boyfriend of 4 years sees the utter terror and uncertainty that lurks just below the surface of "you're so brave". Stupid things that make up our daily lives will never even enter the minds of people that haven't had the cancer bus barreling towards them at 90 mph. Things like EVERYTHING that feels different or funny or hurty about our body now turns into something sinister... "my ribs hurt... oh god has it metastasized? My armpit feels lumpy oh god Im going to die aren't I?!" That is normal from what I hear... isn't it? Normal or not, it sucks. Despite my Herculean efforts to calm down... its not easy to do sometimes. I think meditation helps the most and then an Ativan. Man, is it just me or do oncologists pass that stuff out like candy? I <3>lorazepam. How do you other patients cope?

I think the most indignant part of having cancer isn't losing your boobies... or hair or having menopause prematurely or barfing, no eyebrows, constipation and mouth sores... its being fat from the steroids given with chemo. I mean we look bad enough without THAT!

I end this with...

'Dear cancer, you've ruined pretty much everything ever, the least you can do is get rid of my butt flab.'

Sincerely,

-Tracey