Buzzing

 I buzzed what was left off today. It's gone, well almost. There's tiny little hairs still left. My sophisticated little hacked off semi-cute haircut that had me imaging myself to be a french fashionista is gone. There was too much hair in the drain, it was falling out on my phone when I would lean forward and every where else. Using a sticky roll lint brush to remove what's left as it falls is next, until I'm bald as a bowling ball.

Don't most people wonder what they look like with no hair? I always have. When I was younger, I used to have fantasies about shaving off my hair and taking off to Africa, traveling and not worrying about things like hair impeding my adventures.  When I was pregnant, it was India. I imagined I would flee to India and live with the monks. These two dreams never came to fruition for me and I never found out what I looked like under my hair til now.

It's not so bad. There's a noticeable scar that I'm not sure where it came from and an ugly little sore that they told me was from the steroids. I was bashed in the head so many times as a kid and have so many head scars, somehow the origin of that one was missed.

I'm thinking about my friend Perry, aka Peewee. She rocked the shaved head for years. Where is that woman? I'm going to try to find her on FB or somewhere on the interwebs. I'm not sure if she's the FB type but I need her inspiration. Remembering the first time I saw her in the basement of the World, she was with that Dean guy of Dean & the Weenies. I'm not sure if they were the weenies yet but she came out and smashed plate after plate all over the floor with a saved head wild style and combat boots. I pretty much fell in love with her from that point on.

Back to me now...
At some point in the future my eyebrows, eyelashes and nose hairs will fall out. It'll be very alienesque. Maybe it'll inspire me to get back to my novel writing?

The constant nose drip sucks I hear, no more hair to hold the snot in. Appreciate those nose hairs while you have them. I am.

The Tumor

It's large. 6cm x 5cm ish. That's huge. It's bigger than a golf ball, may 3 golf balls

6cm = 2.3622 inches
golf ball = the size of 1.68 inches (4.27 cm)

The most interesting representation of the tumor size I found was this ball gag

http://www.dhgate.com/extra-large-full-white-soft-leather-6-cm/p-ff8080813049bfcf01304f97e5dc3310.html

Chemo Round 2

My chemo today was delayed because of a scheduling error. I was told my oncologist begged for me to receive the treatment in the facility on the seventh floor which is part of the research center where I had my first treatment. Volunteering for these research studies has it's benefits, it cushier up there with private rooms and a window with a view of the beautiful Buffalo skyline.

Treatment went ok....they used my port today twice. First for the blood draw and then for chemo and all the lovely drugs that go with it so no blown veins.

The good news in that the tumor hasn't grown and is slightly, very slightly smaller. I thought it might be but I wasn't sure. I find myself obsessively checking my breast to see if it has. I didn't want to have too much false hope and be disappointed.

The other good news is that my Oncologist halved the dose of the steroids. I had a nasty reaction to the first round. My face and  chest were beat red and swollen, I wasn't able to sleep, my thoughts were unhealthy and way too much crying.  A double dose of the sleeping pill tonight without worrying about not waking up is in order. Not sleeping more that 2 hours for all those days sucked.


And more good news, I lost 4 pounds. I've been exercising most days with a 30 minute to one hour walk in the cemetery, nothing too hardcore. I tried jogging a little but my boobs are too big and they yank on the port, highly unpleasant.

Not sure if this is good news but my white blood cell went up. The oncologist didn't go over those with me in the appointment and I forgot so I asked for a print out during my chemo. I called to ask what the deal was with higher white cell count to see if I  should I be concerned. The nurse called back and said it from the steroids. My mother and sister think it's because of the bone marrow shot that I get. Either way, it to be expected and better than the count going down. If it goes down, it's a sign of a weakened immune system and I have to go into protection mode with masks and not out in the general populace,

Right now, I feel weird; numb tingling in the mouth, a burning sensation on my scalp, dry eyeballs, racing heart and I'm shaking. My teeth hurt and the squishy feeling inside my guts is back. I am drinking a lot of water to flush things out. One of the chemo meds I am taking is called "The Red Death" and one of the side effects is red pee, like blood. It's not as dark as I imagined nor as bloody as described. I took a picture, maybe I'll publish it later when I started putting up the pics. Oh and I've got hot flashes. Awesome.

All and all I really don't feel that bad, considering. With the dose of the steroids cut in half there is concern for nausea and vomiting as that is the drugs sole purpose, to prevent me from heaving and feeling so sick I don't eat. I ate normally. I'd rather have nausea instead of no sleep and feeling psychotic.

There was a free movie at the Tulip's new school tonight for kids so we went to that. Whoopie! Let the good times roll, chemo treatment and a free movie in the same day. I could barely hear that movie, there were so many kids in there talking along the sound quality being poor. My Grandmother went with us, and she couldn't hear either but the screen was big. Pretty pictures! It was Lion King II and being Disney, good won over evil and there was a lot of nuzzling in the end. I like nuzzling.

My mother likes to knit for Roswell's blanket project while I get pumped with the chemo. The nurse has to inject it by hand, no drip.

 Red Death Pee

What Not To Say To a Cancer Patient

*Republished from another source*

This very much appealed to me after some of the reactions I've gotten since I was diagnosed. Thank you David J. Hahn.

Everyone, let me explain how you should respond to someone who just got diagnosed with cancer:

• Do not ignore them. Do not stop calling them because suddenly you don’t know what to say. Do not try to avoid them in social situations because you are uncomfortable.

• Go up to them. Call them. E-mail them. Tell them, first, that you heard about the cancer. Tell them second that you think it sucks and you’re sorry to hear about it.

• Don’t talk about your uncle who died of the same cancer. Don’t talk about how your whole family has had cancer, and you’ll probably die of it, too. Don’t talk about how many people die of it every year. Don’t talk about death.

• Don’t talk about how you once got diagnosed with pneumonia, so you can understand what it’s like. No you can’t. Don’t try. Tell them you can’t even imagine what it’s like to go through something like this.

• Do not talk about the alternative medicine that you read about in Crazy Monthly, that is sure to cure them of their disease. Don’t tell them that their treatment isn’t good for them, and that lot’s of people end up dying from the treatments, or that chemotherapy is just a big conspiracy between the government and the pharmaceutical companies, etc., etc. Don’t tell them how they got it. Just stop. They don’t need to hear about it.

• If they are sad about it, don’t tell them that they shouldn’t be sad. They have a right to be sad, or exhausted, or whatever it is they feel. Don’t tell them what to do.

• Ask them about the treatment – then listen to the response. It might be a long response, with a lot of medical terms. Listen anyway. It’s all they probably think about right now, anyway, so just let them talk about it.

• Give them a hug, or a handshake, or a pat on the back. Touch them somehow. Tell them that you’re concerned for them, and you’re looking forward to them being a cancer survivor.

• Do not give them the line, “if there’s anything I can do just tell me…”, unless you are absolutely certain that you would do ANYTHING for them. Just don’t say it. Because most people don’t mean it. If you really want to do something for them, come up with the idea yourself, and then do it. Send them flowers, or a book, or bring over dinner for them.

Republished from:http://www.chroniclesofacancerpatient.com/what-not-to-say-to-a-cancer-patient/

Chemotherapy Treatment 1

This post is written post treatment because I was too wrecked to blog.

Anxious to get the treatment started as the tumor seemed to grow larger each day. It was pressing outward on the side of my breast, I could see it pushing out. My skin color was changing and my nipple had started to hurt. The week of waiting for tests and the week of tests was delaying getting this started and I feared that with the cancer growing this fast, that I it was sending out it's evil micro agents and would find a place to metasize. No, I am not crazy. I've read blogs and posts on sites about other woman with Triple Negative and it does the same thing.

 I welcomed the poison into my body.

Yeah Chemo

The Red Death or Devil - a chemo drug

Really it sucked. I was scared but I knew this is what I had to do. I hadn't been sleeping and it was about to get a whole lot worst. I had a bad reaction to the steroids afterward. I turned bright red an my face and upper body were swollen, ugly. I didn't sleep for days, I was easily upset and cried a lot. I went to some dark places. It was so hard.

Two days later, still swollen from the steroids and it stung.

Treatment

The basic of my treatment:

Because of the large size of the tumor and it being invasive and fast growing (triple negative); it was recommended that I forego initial surgery as is generally done and go straight for the chemo in an attempt to shrink it so as to not leave a massive hole in my chest cavity and to judge if the tumor will respond to the chemo. I am told I am an excellent candidate for neoadjunct therapy.

The plan for me is to first undergo 8 rounds of chemo. The first 4 of AC (Adriamycin & Cytoxan) and the T (Taxol ) for four. I'll get dosed every other week.

*CHEMO*
AC->T
AC AC AC AC T T T T
4 weeks of Adriamycin & Cytoxan, 4 weeks of Taxol 

If it goes well, shrinking would be best case. Next best would be not growing and worst case, continuing to grow. If that happens, they will do surgery right away.

It's going to go well (see me staying positive) and sometime in early January they are going to cut out what's left. After a short break which luckily for me will be around the holidays.

*SURGERY*

heal followed by

*RADIATION*
every single day for I don't know how long.

then, it'll be over...sorta. Watching for recurrence comes next. Triple negative cancer has a high recurrence rate but there are things I can do to stave that off and I intend to do them.

Triple Negative Cancer

A few days after my initial diagnosis, I was given further information about the cancer. The tumor is triple negative.  It's pretty harsh but not without hope.

TNBC is a more aggressive, invasive (more likely to metastasis early on), faster growing form of cancer, less likely to show up on an annual mammogram and has a poorer prognosis. It is said to be one of the more challenging subtypes of cancer.

I’m going to list some basic facts about TNC here. I’ve spent a considerable amount of time researching this type of cancer; reading studies, blogs and posts on various sites from those diagnosed with this particular form of cancer. It’s not all bad news. There is a silver lining.

It is thus named because the hormone receptors test negative.

 Estrogen receptor-negative (ER-)  

 Progesterone receptor-negative (PR-)  

 HER2/neu-negative (HER2-)    

Because triple negative breast cancers are negative for the hormone receptors they cannot be treated with hormone therapy as many cancers can.

14-20% of cancers are triple negative.

TNC occur more often in

 Younger women  

 African American women
 BRCA1 gene mutation carriers (I will be tested for this)

Triple negative breast cancers appear more likely to recur than other breast cancers. Recurrence for these cancers often involves metastasis (when cancer spreads to other organs), especially to the brain or lungs. Triple negative breast cancers tend to recur within a few years and when they recur, prognosis is usually poor.

^The Silver Lining:

Chemotherapy can be very effective in treating triple negative cancer. Also, triple negative breast cancers tend to recur early, if I survive five years without a recurrence, my chances of survival are high. I’ve read that three years is also an important hurdle to cross without recurrence.

Because the tumor is triple negative and so large, I am being treated with neoadjuvant chemotherapy (before surgery). My response to the chemo will give a better idea of my prognosis. If I respond well and the tumor deceases my chances of survival increase. The size reduction will also improve my surgical options and the surgeon won’t need to cut out so much tissue.

This is where you come in. Visualize the tumor shrinking. It’s in my right breast. I believe that this can help and there are studies to back this up. I will post more about this in another post.

The bad news

-It's aggressive, fast growing and less likely to show up on a annual mammogram

-It's invasive - more like to metastasis early on

-It has a high reoccurrence rate in the first 2-3 years after diagnosis

-Has a poorer prognosis than any other type of breast cancer due to lack of targeted treatments for TN (Triple Negative)

-Much higher mortality rate

The good news

If I stay clean for somewhere between 3-5 years, it pretty much leaves gives me a clean slate.

Increasing my chances of survival

-daily exercise and weight loss will lessen my rate of reoccurrence

-a healthy low diet with 5 serving of fruit and veggies will also improve my rate of survival

-no hydrogenated fat, processed foods

-more sleep