People you meet

When I was waiting in my gown at U of M I met several nice women including a set of twins. One of the twins had just been diagnosed and her sister had come along to support her. I enjoyed talking with them and answering their questions about my experience. I wish I would have gotten their contact info so I could keep in touch. They were planning to dye their hair red the next day and then get it cut short. Another woman waiting there got good results from her mammogram and before she left she wished us all peace. I felt it. Another woman hugged me before she left the room.

A couple of days after my surgery I was in the dollar store in line to check out. The woman in line in front of my tapped my shoulder, pointed to my hat and said “chemo?” Turned out she had been fighting cancer since she was nineteen and developed leukemia. She also had breast cancer and now has a tumor in her brain. She said to stay positive.

Angelina Jolie and BRCA

I saw on the news that Angie had a double mastectomy because she tested positive for the BRCA gene mutation. It’s unfortunate that there are many women out there who cannot afford the $3000-4000 for the genetic testing. I was lucky that the Komen organization paid for my testing. Everyone has BRCA genes and they help repair any damage to DNA during cell division. But if there is a mutation in the BRCA gene then the abnormal cells can multiply and cancer can develop.

I have a BRCA 1 mutation which means I have a higher chance of developing another breast cancer or ovarian cancer. I apparently inherited this gene mutation from my father because my mother tested negative.

I think it was a good thing for Angelina to go public and raise awareness about the BRCA genes but then I also worry about the women who can't afford to be tested.

Also, one lab does the testing. Just one. How do we know that they are testing correctly? It seems like suddenly so many women have the gene mutation but maybe that's because more are being tested...

U of M

I went to the University of Michigan cancer center for a second opinion. I felt that it was a complete waste of my time. I had to arrive at 8:30am and was taken into the breast imaging waiting area. I sat in the waiting area (in a gown 3 sizes too large) for hours. I was called in once only so they could tell me that they were having trouble downloading my imaging from the other hospital and it would be a bit of a wait. Then I got called in for a mammogram. Then they had to repeat the mammogram. More waiting… Then they were going to do an ultrasound and I was interrogated by the radiologist.

Radiologist: What did they tell you the next steps would be?

Me: My doctors said I needed to come here for a second opinion.

Radiologist: But what did they tell you about what you need to do next?

Me: They told me to come here for a second opinion on how to proceed.

THEN they realized I no longer have lymph nodes in my left armpit to ultrasound. Radiologist left in a huff.

I was then allowed to dress and since it was almost noon I was hoping for lunch. No. Next I had to put on another gown and meet with a nurse practitioner. Then we grabbed a quick lunch in time to hear a nurse navigator talk about absolutely nothing. After that I went to wait to be called for my appointment with a doctor.

They use a multidisciplinary team approach to decide on treatments. So a group of doctors was supposed to be going over my case, reviewing my imaging and pathology slides, etc. The nurses called it the “tumor board”.

We waited in the exam room for almost 3 hours (I was in yet another XL gown). The doctor came in, sat on the stool and wheeled herself right up almost knee to knee with me and told me my cancer is “incurable”. It's amazing that one word can completely suck hope out of a room. After that I kind of went into a rage. I saw red. I had thoughts of just getting up and walking out but I was in a gown. She then proceeded to draw a picture about the ovaries and hormone production. My tumor was estrogen positive which means it uses the hormone to grow. I will need to have my ovaries removed to stop the production of estrogen. The adrenal gland also produces a form of estrogen so after I have my ovaries removed I will take medication to inhibit the formation of estrogen. Then I will need periodic scans and bloodwork. It is considered stage IV because of the positive lymph node in my right armpit. Normally, stage IV means the cancer has spread to other organs like the liver or lungs. The doctor said it can be considered to be in remission but there is “no cure in 2013".

Helpful organizations

These are some helpful resources for people with breast cancer:

The Pink Fund
Susan G. Komen Organization
Gilda's Club
Good Wishes Scarves
My Hope Bag
The American Cancer Society

The Pink Fund helped pay my car payment for 3 months while I was going through chemo.

The Komen organization paid for my genetic testing that determined I have the mutation on the BRCA 1 gene ($3,000 test).

Gilda's Club has many great programs for cancer patients/cancer survivors/caregivers.

Good Wishes sent me a free head wrap.

My Hope Bag sends free bags of goodies to cancer patients.

The American Cancer Society helped me with a free wig from their wig bank.

Where I am now...

I started radiation treatments in Jan. and had a total of 35 treatments. My skin did fairly well except for my right armpit. It felt like a really bad sunburn and the skin peeled in that area. I saw my radiation oncologist on April 22. He called me "one tough cookie" and said I don't need to see him again. Whew!

I had surgery on Apr. 10 and spent one night in the hospital. They had planned to do a latissimus dorsi flap (involves tunneling the muscle from the back around to cover on the front after the mastectomy) but that wasn't necessary because they were able to close with my skin. So the mastectomy on the left plus axillary lymph node removal on both sides. The surgeon said the lymph nodes in the left armpit were "a mess". I'm healing well but still sore in the armpit areas and still have some swelling in those areas. The worst part of having surgery was the nausea after from the anesthesia. I was sick until about 3am then I felt fine. I had 3 drains placed, 2 on the left side and 1 on the right. They include tubing attached to grenade-looking bulbs. The bulbs have to be emptied a couple of times a day. I had to shower with them safety pinned to a lanyard so I wouldn't accidentally pull them out. I also safety pinned them to my clothing at all times. The first 2 were removed a week after surgery and the second was removed 2 weeks after.

The pathology report showed that the surgeon didn't get clean margins in a couple of areas. That means there was still cancer at the edges of the tissue that was removed. In my case there is probably cancer still deep in my left armpit area and in/near the muscle of my chest wall. Of the 18 lymph nodes removed from my right armpit only one was positive for cancer. Because of that one positive lymph node technically it is metastatic.

I am currently waiting to get an appointment at the University of Michigan cancer center for a second opinion on how to proceed. They said I will be there all day so I'm not sure if they will repeat all my scans/tests. They will also review my pathology slides. I may have to have further chemo and possibly be enrolled in a clinical trial.