Buh bye hairs!

When my oncologist said 2 weeks it really was 2 weeks. I mean on the dot. To the hour, probably to the minute. I thought I might be one of the lucky ones that doesn't lose their hair. Guess not!

A very strange side note... you lose your pubic and underarm hair first. Freaky eh? I won't show that part....

These are from my last day with hair.

If you're wondering how your hair falls out during chemo; it falls out in huge chunks. The hair isn't attached to anything anymore so it makes these little popping noises when it comes out of your scalp. It doesn't hurt... it sorta feels good honestly. I took a picture of a handful that came out when I ran my fingers through my hair.


A picture of Adam and I (he hates this picture of himself btw) is in the bathroom minutes before Adam buzzed my hair short.

My previously stellar mane of hair now on the bathroom tile... :(

But yeh know, I have to make an empowered face, because shit, I preemptively got rid of my hair! I like to think by shaving my head meant it was my choice when to lose my hair. It didn't really make me feel any better in the long run, but the actual shaving part was totally entertaining.

The next my hair was completely gone. We used duct tape to get the little stragglers off later. I'm obviously more bummed in that picture all hairless and lame...

but oh look, WIGS! Eff yeah! Looking sick sucks, people stare at you and tell you about their aunt that died. I'd just as soon not hear any of that so I chose to wear wigs. They're itchy but it's kinda fun because you can have an identity crisis every day!


And thus concludes the loss of my hair on round one of chemotherapy. She's a saucy mistress that chemo one day I hope to slap her in the face for all the heartache she's caused.

Often the cancer experience is a whirlwind affair for a year. It leaves you breathless and probably a little scared sort of like a bad relationship... alright a super abusive relationship where your partner tries to kill you.

The week or so preceding my diagnosis was nuts. It was filled with a lot of crazies coming over to sell me alkaline water and cashew cheese, going on a raw food diet and my sister making me drink something that tasted like hippy farts. I think when a person first gets diagnosed with Maserati cancer all you can really do is hang on and react. I went to a few places that had sarcoma units. I ended up liking UCLA's approach the best. My doctor was cute and very willing to accommodate my questions and having my whole family in on my office visits. (I'm sort of the baby of the family... most of the time to my annoyance).

I was outfitted with a cyborg port and the next day I started Adriamycin (they don't mess around at UCLA. The red devil as it's called is quite the stuff. As you can see from the pictures the first day I was like "heeeey this ain't so bad" and the picture from the next day I look like I'd just been hit by a truck. I seriously thought I might die that night. I don't think I've ever been so sick. My whole body felt like it was trying to escape chemo.

I was only to have 2 rounds of Adria before getting a PET to see if there was tumor change. Turns out that 2 days after my first infusion my tumor was gonnnne. I couldn't feel or see it anymore. Then, right before it was due for my second infusion it came back. So, this told my oncologist that the cancer was being hit by the chemo and then regrouping. That couldn't be good... So, I had my second infusion and a PET to see what was happnin'.

The Adventure Begins!

So having really just started this blog its mostly filled with older posts from the Breast Cancer Network that I write on. I thought it might be sorta cool to chronicle my journey with Angiosarcoma of the boobie and see how it goes. First up is the day I got my core needle biopsy, consequently also the day I went in for an exam with a new doctor... I guess it was that urgent.

The story:

So an unsuspecting me goes to a different boobie doctor after 2 years of ignoring what my other boobie doctor diagnosed me at 24 with; a globular hemangioma AKA a benign vascular tumor much like a strawberry mark (but inside your body). My former boobie doctor took my tumor out on my insistence. Whoever tells you that cancer doesn't hurt is full of shit. It hurt! I couldn't sleep on my stomach and the mass hurt to the touch.
Old boobie doc basically told me to come back for a mammogram when I was 35. He also told me hemangiomas almost always come back but not to worry about it... and if it was really bothering me he'd take it out again. So, when it came back 3 months after having it removed I took the drs. orders, I left it alone. For 2 years. Eventually, the mass got so big and uncomfortable that I was like eff this noise and went to a new boob doctor. While I was there telling her about what the other dr said, she was like "uh, you have one unhappy breast... and that is NOT normal. Your nipple is inverted and you're in pain". She got on the phone then and got me a STAT apt with the breast center. I had an ultrasound that day and while I was there the radiologist picks up the phone, calls my new boob doc back and asks her if he can biopsy the mass. I knew then I was in deep poops. Then the ultrasound doc goes somewhere and leaves me in the room with pictures of my tumor and a GIANT freaking needle and me in a fancy pink frock.

A word about biopsies. They hurt. Also I almost passed out, not generally afraid of needles or blood I found this surprising. My head was about to pop off from shock and panic and everything moving so quickly. The biopsy was guided by ultrasound so I actually had to watch while the 2 doctors fussed over my boob. Then they started talking about 16th century medicine and I sort of got tunnel vision and my hearing got all fuzzy. I clung to consciousness like a barnacle and made it through the biopsy without barfing or passing out!

The doctor told me that my results would be in the next day by 3 and if I did not hear from him, to call.

Next day at 3 I called. "We don't have the results yet"

day 2 at 3: "We are having trouble determining what we are seeing"

Day 3 at 3: "We are confirming with a specialist that you have a highly vascularized tumor- not sure if its malignant"

Day 4 at 3: "we've sent the specimen out to Johns Hopkins, Mayo, and MD Anderson for confirmation of diagnosis"

Day 5 at 6: "Hey Tracey, is someone there with you?" Yes... "You have a very rare malignant neoplasm called Angiosarcoma" Ohhh shit... "yes, I can't treat you, Its not breast cancer (even though its in your breast) I have to defer to a sarcoma specialist" oh... okay, thank you? "I am going to have the sarcoma board at City of Hope review your case, we're going to use you as a case study, it means you'll get the best care and most attention available."

I was in shock so its little surprise that I did a whole lot of nothing besides look at my mom and say "Evidently I have cancer... the bad kind" Not that all cancer isn't bad it's just that I happen to have the Maserati of cancers- fast moving and rare.


Here is a picture of my fancy giant needle and my face after seeing it. So, there my story starts on the 21st of January 2009.

Cancer Diary

It's part of the process for me and presumably others to write about their experience with cancer... for me in particular I tried to keep my bad thoughts in a book where only I was able to see them and release them. For the rest of the world I was strong, fearless and stoic. I had to have a burn book of sorts or I'd go ape-shit. It's not a good thing to keep things bottled up, nor do I think its a good thing to create your own pity party. This book saved my life. This book let all of the bad bleed out of me and into its pages... I was able to close that book with all of its poison and toss it into a drawer and go about my day kicking some ass and taking some names. People express themselves differently for me this was the right way. The amount of anger and bitchiness and sadness that my cancer diary contains is mostly for me... and its not much fun to revisit it. It's full of the worst parts of me. Man am I happy I did this. Here is the first entry about a week after my diagnosis.

"you're sooooo brave"

My biggest complaint at having been through the cancer ringer is the fat. I gained 19 lbs on chemo. It sucks, but what can you do when the only thing that doesn't make you want to projectile vomit all over is potatoes? Nothing... there is nothing you can do. The steroids given with the meds make you want to eat a barn... and all of the livestock in it. You feel to shitty to work out and too angry (courtesy of steroids) to take the suggestions of anyone trying to help you.

So, now that the fun is all over and I am cleared and ready for take off (health-wise) I've been going nutso with the workouts. I must delete these muffin tops before I go totally mental. I have been busting my buns for about 3 weeks now. I do no less than 30 minutes on the elliptical on a daily basis, but usually I put in 40 mins to an hour of cardio. I have also completely changed my diet. I get about 1200 calories a day and I track everything I eat. I also joined a Pilates class to tone muscle and try and get some flexibility back into my body. I really love Pilates. I am surprised because I am the kind of person that HATES to exercise. I hate it more than a biopsy. I have pretty much gone my entire life without working out and somehow maintained a relatively lithe profile. So the fact that I enjoy going to Pilates is no less than a miracle. I am trying to shape up drastically for one of my best friends weddings in Cancun in May.

Chemo has turned me into some sort of lumpy potato woman so it was time to act. So, I have done Pilates 4 times a week for 2 and a half weeks now. I do cardio every day. I have lost.... (drum roll-) 1 pound (crickets). WTF?!???! How the hell is that even possible?! I am seriously dreading that my body seems to have staged a coup and is refusing to get into shape by my May 21st deadline. NOoooooooo. I can't be one boobed AND fat. The universe is conspiring against me and I will not have it I tell you!

So anyway. My hair is growing out. It looked at first like it was going to be straight but no luck... its curly and full of evil. I have no idea what to do with it. It's like a mousy brown poof ball atop my noggin. As of last week I decided to go sans wig. I was getting sick of wearing them and there is nothing quite so nice as to have your own hair back after almost a year of having none. The Pilates class in Pasadena is full of immaculately groomed yuppie house wives with too much money and too big of cars. I think they flaunt their preternatural perky boobs and bouffant hair just to remind me that I'm different.

I have had 6 of these freaky stepford exercisers come up to me and say things like.... "Oh, your hair is so cute, I could never do that". "oh wow, you're so brave!" or "I just don't have the bone structure for short hair like that... looks good on you though", "oh my god, were you scared? Did your stylist mess up?" Really, I don't know what to say. Should I smile and laugh awkwardly? Run away sobbing? Tell them my hair stylist is a UCLA oncologist? What? I don't mind talking about having had cancer... it doesn't bum me out. I feel like I talk about it ALLLLL the time. I don't want my cancer battle to define me. I'd like that chapter in my life to shut like a bad book. I should expect people to comment on my "do", but when people say something I am always a little annoyed. Especially since it's usually prefaced by "you're so brave". Seriously.... no one would want my cancer fro if they could help it.

Anyway, I hope all of you lovely women are doing well and fighting the good fight. Any suggestions that don't include pushing these blond automatons into oncoming traffic would be welcome. :)



-Trace

Progress

My hair is growing back... oh dear merciful baby jebus, it's straight. The first time it grew back after chemo it was curly. I hated it. I prefer NOT having hair to having curly hair. So this time, to my sheer elation, it came back straight! I'm not entirely sure what my dear ol' hair is up to though, it's growing in fairly thick but I have these 2 spots above my temples that refuse to grow. I look like a little old man with a receding hair line. My eyelashes are growing in very squirrly and kinky. I'm waiting for that to normalize... and my eyebrows are slowly coming in too. No nose hair yet... I can't say that is a bad thing tough. I will be so happy when my hair it grows out enough for me to ditch the wigs. I'd like my head to be free!

I drew a self portrait with hair progress. I look like a chia pet with illustrated grumpy face and weird eyebrows. Gooooo me!

Illustrated party bummer

I do try and stay positive, and most of the time I am successful. It's been a long road this past year and I am still figuring out the new normal and the new me. One of the side effects of chemotherapy was rapid weight gain. I gained 19 lbs over the course of the last 4 months on Taxol. Nothing fits and I am pretty miserable. I don't recognize myself and I think my butt may have registered with Los Angeles county for its own zip code. It's difficult to go through such an emotionally and physically challenging ordeal such as cancer without the additional muffin-tops. Funnily enough my sense of pride and vanity is mostly related to the chub factor. I've always been a thin person and I am now officially (according to my BMI) overweight. It's embarrassing and even though I have an excellent excuses as to why I've become fat, it causes me almost more grief than missing a breast or having no hair.

My cats have taken to trying to hibernate in my squishy fatness when I get out of the shower. The combination of warm pudgy smell good pillow people is too much for my cats to resist. When I get up in the morning I am covered in kitties.... ain't right I tell you!

Here... have a picture.

OUCH! and an MRI update.

I'm all done, but I sure don't feel done. I guess because I am a living billboard for cancer. I have this awesome newly fat and mangled physique. Hot stuff I tell you. Maybe it will feel more final when I get my port removed.

So I got my MRI results back for restaging and to look for mets. Here is a Tracey-fied version of what it says:

Patient has had her left boobie lopped off and irradiated. There is mild irregular thickening of the underlying major and minor boobie muscles (pecs)... we know this because we injected some contrast and that area looks all cloudy and feathery with some veins snaking around in it. Also the muscles under the armpit (lats) are swollen. The lower chest and upper abdomen are all poofy too. In the fat layer. She's a little swollen in a near perfect square. Kinda freaky if you ask us.

We don't see any signs of tumors anywhere in the muscle swelling. We also don't see any tumors in the lungs. We did however discover the secrets to space flight hidden in her right kidney (not really true).

Conclusion: Us here MRI readers thing the poofyness is caused by boob removal and radiation. Probably....

We sorta think you should get a baseline PET/CT.

Sincerely,

MRI readers of America.

Huh? PROBABLY caused by radiation... and... and.... SHOULD get a PET/CT scan?! Cant you be a little more definitive than that MRI readers of America?!

My franken boobie hurts. All the time. It has all sorts of interesting sensations..... like tingly, itchy, shooting pains, sometimes feels like it's being prodded by burning pokers... sometimes flaming ninja stars, it ALWAYS feels like I just subjected my left side to a thousand chest flys so it feels sore. I can't move it around that good either because its stiff. I also have this otherworldly tan that happens to be in the shape of a square.

Is all that normal!? Chemotherapy really sucked... and when I say chemo I only mean Adriamycin. Radiation however was the worst thing ever.

Here are some graphic representations of what my frankeboobie feels like... Is this NORMAL!?