14. It's a Cruel Summer

Strange voices are saying
What did they say
Things I can't understand
It's too close for comfort
This heat has got right out of hand

It's a cruel, cruel summer
Leaving me here on my won
It's a cruel, cruel summer
Now you've gone ...

Bananarama's 1984 hit Cruel Summer, pretty much sums up my summer of 2009. It was cruel. No, I didn't have five thugs chasing me down on BMX bikes or beating me up during a soccer game on the beach (Karate Kid references for those of you younger than 30); rather, I had cancer cells hiding in my body, threatening to spread through my lymph nodes and I was alone. My family and friends hadn't deserted me ... in fact, they were my saving grace. The healthcare system deserted me, failed me, and left me to find my own way through the maze that is breast cancer treatment. I was left lost in limbo in the field of doctors and appointments. I needed a Mr. Miyagi presence in my life to teach me how to fight back ... against cancer, not the five thugs in skeleton costumes.

I met with an oncologist on July 22nd. In that initial meeting, Dr. F introduced me the information of if/when breast cancer does metastasize, it is usually found in the brain, liver, lungs or bones. That being the case, he ordered several tests including chest CT scan, full body bone scan, brain MRI and breast MRI. (I'm a tad claustrophobic and the idea of being closed in a MRI machine made me a little hesitant. I was given a prescription for Valium.) 

The next few weeks became a blur of doctor appointments and tests.

July 23rd - one month follow-up appointment with Dr. L, he was pleased with incision healing; had blood drawn at the clinic for testing
July 24th - had CT scan (the technician was Tammie's husband, super great man); was given injection of the contrast dye and told to return three hours later for the full body bone scan

I caught a plane Saturday morning to Utah and spent a great week with my nieces, nephews, sisters and parents. A week later, I returned to Sacramento and the next day caught a plane to Las Vegas for a work conference. I had purchased a new bathing suit that sufficiently covered my breasts/scars as I knew I'd be enjoying a little down time poolside. The rest of the tests were just going to have to wait.

August 6th - breast MRI done at the imaging center
August 7th - showed up for my 9am brain MRI appointment only to be turned away (after the had completed my registration and had me all set to go) because I still had the contrast dye in my body from the day before
August 10th - had brain MRI

Enduring all the testing wasn't difficult. I was becoming accustomed to all the needles and dyes. It was the waiting for results and time in between all these appointments that rattled me a bit.

August 13th I returned to meet with Dr. F. He cut to the chase rather quickly. All the test results were fine; no sign of my cancer having spread. However, the breast MRI did reveal a 3/4" diameter circular mass in my right breast. He wasn't sure if it needed to be biopsied or not and decided to postpone any additional testing until after he had met the following week with the hospital's tumor board. Meanwhile, he thought it best I consult with a radiation oncologist. I left the appointment that day, referral in hand, somewhat confused and began seeing myself getting lost in the metaphoric maze. What was a tumor board? Why aren't we automatically going to biopsy that mass? Why do I consult with a radiation oncologist right now?

Apparently Dr. F pulled some magical trick out of the rabbit's hat and I had an appointment the next day with Dr. R, the radiation oncologist. The appointment with Dr. R would become the starting point of my real breast cancer maze. And, quite honestly, I thank her for her honesty that day. She introduced me to another possible path in the maze ... one that would result eventually in saving my life.

Dr. R refused to address or discuss my possible radiation treatment. It was much too soon for that. There were other matters she wanted to talk with me about. She reviewed with me, with a straightforward and honest voice, the situation at hand. I was 34, my paternal grandmother had been diagnosed with breast cancer at 34, my cancer was bilateral (it's said only 4-5% of breast cancer is diagnosed as bilateral), and the cancer in my right breast had been invasive. There was too much going on here for us to ignore and jump right into radiation. She asked if I had been advised about mastectomy. Not really, the doctors thus far said that with the bilateral lumpectomy, radiation daily for six weeks, and five years worth of hormone therapy, the results are practically identical to those of mastectomies. She didn't even blink and said to me, "You need to get out of that tiny town and county hospital. Your case is too unique and you need to be treated by people who are more experienced with this." It wasn't a suggestion. I saw it in her eyes and heard it in her voice. 

"You should consider mastectomy of the right breast certainly and maybe, quite possibly even the left, but that's more up to you. The right side has that mass that we don't know anything about just yet and the cancer was down to the chest wall. Maybe consider going to UCSF, as they are the best around. They even do nipple-sparing mastectomies. You should see Dr. E there."

"Have they talked to you about getting an Oncotype DX test?" she continued. 

"A what test?" was my elegant reply. She wrote it down on a post-it note for me.

"Oncotype DX. There's a company, one company, that does this test. They take your specific tumor taken from your lumpectomy and they examine it. They divide it into twenty-one genetic markers to help evaluate and estimate the likeliness of a recurrence. You have to have this test. Some insurance companies won't cover it because it's expense. Thousands of dollars. But you have to have it. Tell Dr. F to request it. And, meanwhile, you should consult with a medical oncologist. Here, go see this doctor. I'll even call her to give her a heads-up about your case." She wished me well and said that if I still needed radiation down the road, she'd be happy to treat me. I left that appointment with a referral to see Dr. C. I had been given very valuable information, but I was getting deeper and deeper into the maze.

Craig wasn't available that day, so a good friend of mine volunteered to accompany me on my consultation visit with Dr. C a few days later. Karen's wife, Jill, had been diagnosed with breast cancer six weeks after me. Together, they had educated themselves with important information needed to help determine options, treatments, etc. Karen and Jill were already good friends of mine, but we became family because of breast cancer - warrior sisters. 

While Craig was my papa-bear protector, Karen became my momma-bear protector that day. We emailed one another that morning with our lists of questions to ask of this highly regarded medical oncologist. I asked Karen to bring my list and check off the questions as I asked them. If I missed something, she promised to be my voice and ask for me. My list of questions went something like this:

 • need thorough explanation (in English, not Medical Talk) of surgery pathology reports including significance of the cells found in the second lymph node? what stage is my cancer?
• how do we ensure all other nodes are clear?
• is all the cancer out (as the pathology report indicated the margins were not clear on the right side)? • how important is it that the tumor in left breast turned out to be twice the size the tests had indicated it would be?
• why would Dr. F be hesitant to biopsy the new 3/4" circular mass in my right breast?
• if we do biopsy it and it's negative, what are the odds of it being a fasle-negative?
• if it's positive, what next?
• what is this Oncotype test all about?
• how are the three levels of result treated?
• how important is my family history, even considering I tested negative for the BRCA1 gene?
• how does my diagnosis influence screenings and/or odds for my relatives (sisters, mom, nieces)?
• without mastectomy, is radiation absolutely necessary?
• possible effects of radiation on left side especially (concerns about lungs, heart)?
• possible effects radiation might have on possible future treatment of mastectomy/reconstruction?
• side effects to my ovaries/reproduction options?
• is chemo necessary if no mastectomy? if mastectomy is done?
• length of expected chemo treatment? what kind of chemo and expected side effects?
• do I have to lose my hair? (Yes, at the time, losing my hair was somewhat concerning to me. We'll get to the whole hair as a shield topic later.)
• is mastectomy the best chance of reducing my recurrence odds and if so, by how much?
• thoughts on nipple-sparing mastectomies? 
• pros/cons of types of implants for reconstruction, if needed?
• will I have to take Tamoxifen and if so, for how long?
• side effects of Tamoxifen? odds of getting ovarian cancer from this drug?
• what will Tamoxifen and/or chemo do to my ovaries/reproduction?
• if the chemo and Tamoxifen will damage my ovaries, should I consider freezing my eggs?
• long term effects of this drug?
• should I seek third, fourth and fifth opinions considering my unique case? 
• why are there so many different interpretations and thoughts about what's going on with my case/cancer? who is right?

Those are just the topics that came to mind that morning while I was emailing Karen. Many more would surface, believe me. Karen added some important questions to the list as well. I ended my email to Karen with this paragraph (and yes, I do have a print-out of all of this in my medical binder, which is actually now an over-flowing box of papers): 

My main concern is that I'm not going to die from this right now or even in five or ten years. I want to give myself the best possible odds to eliminate recurrence (as I know it's harder to treat recurrence and a recurrence is more likely to be diagnosed at a progressed stage). I have two nieces and six nephews  and I am determined to be around long enough to see them each have their own kids!

Dr. C was highly recommended and educated. I suppose I was secretly hoping she was going to turn out to be my Mr. Miyagi and guide me through the rest of this journey. Nope. The appointment with Dr. C was significantly unhelpful. I felt like a checklist to her ... answer this question, mention that, check it off the list, move on. She gave me answers I could have found in any book about cancer and did nothing to relieve any of my stress and frustration. She wished me well and off she went. I left that meeting feeling even more lost and without direction.

I thought to myself, "What do I do now?"

Hot summer streets
And the pavements are burning, I sit around
Trying to smile
But the air is so heavy and dry

It's a cruel, cruel summer
Leaving me here on my own
It's a cruel, cruel summer