You're so vein, you probably think this post is about you.

I think I mentioned previously that the first IV didn't work and I thought the nurse hit a nerve. Well, now it looks like some chemo probably escaped under my skin. My arm is turning red near the injection site and the pain goes all through my thumb. It actually hurts to make this entry. Please feel bad for me?

(Update: This turned out to be a bad case of shingles. The entire red area above blistered and oozed out of control while I was in the hospital. I had to keep ice on it constantly and take percoset for the pain. Here is a pic of what it mutated into while I was in the hospital:

After the blisters oozed and then scabbed the rash was pretty much gone, but the area is still numb to the touch and discolored. I hope I never get this ever again. I wouldn't wish it on my worst enemy. The ordeal lasted about 2 and a half weeks.

The Big "C"

Nope, not cancer, and not chemo, but: constipation! Oh lord have mercy on my intestines. Day 4 after treatment and I am balled up in pain. I was told to keep up the stool softeners, but I didn't understand the seriousness of it. The nurse explained that even if you use stool softeners, the zofran stops digestion, so nothing will move without constant laxatives. I hate cramping so I avoided them and now I am feeling the pain. The stomach ache accentuates my headache and nausea and overall makes me miserable.

I've learned a valuable lesson as I now write this entry with a little cup of c, (coffee).

Chemo: Round 1

So, one day prior to chemo I am instructed to pick up meds and start taking one of them right away. I visit the pharmacy and I get a goody bag of:
Decadron
Ativan
Zofran
and Compazine

The decadron is an anti-allergy pill which amongst other anti-things gives me a migrane, cotton mouth and makes me feel cracked out. I chugged plenty of water to try and get rid of the taste of fur, but still couldn't get any good rest that day or night.

Now it is August 22nd, the big-day. I've left family drama out of the entries so far, but while I love and desperately need my family, they're emotions and inability to handle added stress made them ineligible candidates to accompany me to my infusion. I decided instead to elect my best friend who knows all I need is some good conversation and to laugh it off as much as possible. I know she prays and cries for me in private in addition to her own personal financial and emotional struggles that life throws at everyone, but to my face she simply shows strength and that's what I needed most of all.

Immediately the nurse frowns at my veins and goes for one near my wrist towards the top of my hand. Again, I whined about the placement being uncomfortable, but I didn't want to endure moving it. Well, the time comes for me to pee and when she moves my arm my wrist swells up and my head is thrown back in pain. She had no choice but to remove it so I could pee but the pain continued. She found another vein closer to the middle of my arm. The rest of the treatment goes smoothly, but I'm warned that my veins will only become more difficult to use and I should seriously consider having a port installed. So now I have a new decision to make and I haven't yet.

Decadron was only for the day before, day of and day after chemo. I also took the zofran for Monday and Tuesday and this morning I had to take a compazine because I felt myself belching which is a tell-tale sign of nausea. The Ativan helps me sleep but I'm still very dizzy, constipated, crampy and grumpy. Over-all it seems tolerable, but I can't say for sure if I'll be going back to work or not....

Clinical Trial

So after my post-op appointment I am cleared for take off to Oncology. I decided to go with my Mom's oncologist since she raved about her and it felt comforting to go to someone known rather than meet another new stranger. She is very sweet and patient and answers all of my questions.

She didn't hesitate to tell us that I qualified for a clinical trial. As a triple negative high risk sub-type, they are still researching alternative treatment options. I read about "beta blockers," but I found out that project fizzled without dramatic results. The trial in question for me included 3 groups, with the last experimental drug group including Avastin. I knew nothing about it, so I of course went home and googled. Avastin is a newer highly controversial drug that while helpful in treating brain and colon cancers, it hasn't proven good results in metastatic breast cancer. The FDA has actually started moving to take the drug off the market for breast cancer. When I confronted the clinical trial nurses about this, she asked if I had read anything about the benefits. Only then did it occur to me that I was so focused on the negative, I bypassed any notion of a good reason to consider the drug. It turns out that while Avastin may not be beneficial to patients with advanced breast cancer, the early stage groups have been showing a lower rate of recurrence. Avastin can potentially keep cancer from coming back when it's been surgically removed. Apparantly the name of the game with triple negative is to keep it from coming back sooner than later. If I can reach the 4 year mark, I could hypothetically be home free. This changed my outlook completely, and I signed right up. I was also comforted to know the side effects would be low if any, so that made me feel better too.

I did my labs and submitted my consent and two weeks later ended up in group two. I was dissapointed at first, but I was also relieved to only have to endure 2 drugs rather than 3. Group 1 included Taxotere, Cytoxin and Adriamycin for 18 weeks. Group 3 included those two plus Avastin for an entire year. Group 2 is simply Cytoxin and Taxotere for 18 weeks. Since my cancer was only stage 1 with no spreading, my Dr. agrees this regimine followed by radiation should be enough to do the trick.

The Lumpectomy *rant*

I hate to write about this and re-live it. But if someone else is reading this and looking for expectations, I hope it helps prepare you somewhat. I could just be a huge oversensitive baby and you could go through it with no problem.

My surgery is scheduled for 10:30, but I have to check in at 7:30 for, "prep." I don't have much expectations, but I know my surgeon wants my tumor marked with a wire and my lymph nodes traced with blue dye. So I wait in "nuclear medicine," for the blue dye procedure. The Dr. is a half hour late and makes me extremely anxious. Finally he arrives and he happens to only have one leg due to a history of bone cancer. I have no choice but to get over my frustration because there really isn't a better excuse for being late than having to get yourself around on one leg to your career of being a Dr and helping people and savings lives. I immediately feel like a POS.

That part took all of 10 minutes and was mostly just annoying but tolerable, and now I'm on my way back to radiology for the wire placement. This is where it turns into a torture chamber. Apparently I have to sit straight up inside a mammogram machine for an entire hour while they use x-ray pictures to find my tumor and poke at it with a hollow lance using nothing more than lidocaine (which they didn't really allow enough time to set in). Each time they re-set the hollow needle they have to take a picture which means I remain naked, seated upright, squeezed in a vice with a giant needle sticking out of me and tears streaming down my face. The Dr. tries to make small talk with me and asks if I have any kids. Really? I'd just appreciate you rushing this procedure as fast as possible with little to no talking as I'm in quite an uncomfortable and inappropriate position. Finally they find their sweet spot and thread a wire through the tumor leaving half of it sticking out of my chest. I felt pretty much all of it. And complained to everyone that would listen. No one seemed to care much. I'm getting hungry and I'm in pain and no one so much as pats me on the head.

Now I'm wheeled into pre-op where they start the IV. This also pretty much sucks. The nurse has a gold piece of flair that says she's worked there for 15 years. That makes me want to feel better, but since I've already been poked several times this morning, it doesn't. She ties the blue band to make my veins bulge and actually uses the slapping method making me frown in discouragement. After she places the IV, I tell her it doesn't feel right and it's uncomfortable. Her obvious suggestion is moving it. That doesn't sound like fun either so I suck it up and STFU. When I get wheeled in front of my operating room the anesthesiologist hooks me up to my cocktail. It burns like fire and I instantly burst into tears. "Well, that's not right... must be something wrong with the IV." All I could do was sob in response. I was passed out moments later and he did move the needle but I still don't think it was right because both entry points were badly bruised after I left the hospital:

So from there I was discharged and went home. I slept a lot used many ice packs and a few weeks later I received a nice hematoma where my lymph nodes were removed and a nice hefty bill for my out of pocket expenses towards my yearly max. 

The good news was that there was no metastasis and my lymph nodes were clear. The one silver lining to end this entry on a high note :)

Cancer Supernova

I have decided to create this blog as a form of therapy. Since I know there are so many other women like me experiencing a similar situation, I figured a blog would help someone else somewhere, who, like me, has been googling themselves to death to find someone to relate to online. I am a victim of TNBC (triple negative breast cancer). So many online forums become abandoned, and questions go unanswered. People's 1st hand accounts are somewhat vague and lack the detail that I personally am longing for to cling to normality. So without further ado, here is my story. It's a long one, so you may decide to leave and check your Facebook instead. No offense taken :)

I am a 32 year old married mother of a 19 month old baby girl. I spent my younger childhood growing up on Long Island, NY until I moved out to Sacramento when I was about 13. I work for a bank as an Analyst, but really it's a fancy term for a clerk. My husband is in the car business and works late nights and every weekend. Can you hear the tiny violin? I loved my boring life of routine and uneventfulness. I had just registered for some classes to finish what I started on a business degree before I got pregnant. I wanted to take my daughter to swim lessons and maybe do a little home improvement. And then, life happened. A favorite and very appropriate quote from Mike Tyson: "Everyone has a plan until they get punched in the mouth." That's basically what happened. One June morning I lied in bed while my husband showered and decided to do a breast exam. My mother is an 8 year breast cancer survivor, so I knew early on that self exams are very important. I found the lump right away and figured it was just one of those, "common, but no big deal," things. Anyone who has Breast Cancer and is reading this right now, had to go through hearing that a few hundred times before the bomb was dropped on them, and that out of 80% of benign lumps, this one is cancer. We should have bought a lottery ticket, right?

Onto the smash machine (mammogram), the ultrasound and ultimately the biopsy needle. Three days later I get the call that it is in fact breast cancer. I'm referred to a surgeon who explains that although the tumor is tiny (<1.5 cm), it is in fact invasive and a high risk sub-type type based on my


pathology report:
Estrogen receptor: negative
Progesterone receptor: negative
HER2neu: negative
Furthermore...
Tubule formation score: 3
Nuclear pleomorphism score: 3
Mitotic count score: 3
Nottingham Histologic Score- Grade III 9 points

All signs point to super cancer. AKA (triple negative, high risk). It will not respond to hormone therapy since it does not feed off of hormones to grow. My only options are lots of chemo and radiation.

Being a knife happy surgeon, he wants to cut it out immediately, but we agreed to undergo a genetics test first to see if a gene mutation would explain the link between my mother and I both having pre-menapausal breast cancer. If a mutation is present we're looking at a bi-lateral mastectomy as well as the probability of a hysterectomy in my 40's. Regardless of the mutation I am definitely getting chemo since this type of cancer has a tendency to repair itself and return within 2 years. This genetics test took two whole weeks for a result which came out negative. The two weeks were gut wrenching. However, it didn't help answer any questions since there is obviously still a genetic link that science simply hasn't identified yet. Still, I opt out of the mastectomy because the idea of recovering from major surgery with a toddler made me cry myself to sleep at night. I could not imagine not being able to hold my baby or pick her up if she fell and hurt herself.

05/08/2012: For those of you recently diagnosed who may have stumbled across this blog, there is a new book recently published by a fellow triple negative survivor available on Amazon. If you are in the woods on what to decide for surgery and treatment, it might not be a bad place to start :)

Diagnosis: Breast Cancer