Fifty Shades of Pee

This evening at dinner my daughter told me I have two superpowers. A super sense of smell and super smelly pee. It also constantly changes colors. I know that is TMI but I’ve seen emerald green, mint green, rose, tea, high vis yellow and many more. That is just not right. It is the result of all the chemicals that have been injected into me over the past 5 weeks.

So far the side effects of chemo round 1 have been better than I expected. I have a bruise from the IV on my forearm. The first night I couldn’t sleep from the steroids, the incessant beeping of my continuous glucose monitor from high blood sugar (also caused by steroids) and probably some anxiety. I finally feel asleep at 2:30 am and was up again at 6:30 am. I spent Friday morning feeling great until I smelled the food I was making for lunch. It was like being pregnant. One minute I’m fine, the next I can’t smell, look at, or even discuss or think about certain foods.

I took my first anti-nausea pill, put on a video for the kids then had a nice nap.

The weekend continued the same as Friday and I learned through trial and error how to manage my blood sugar. I need to start with a 250% basal rate and then slowly decrease it to 125% by Sunday. I’ll also need to give extra insulin with meals, my insulin:carb ratio probably needs to be halved.

On Saturday I ate mostly toast and fruit until dinner. My neighbors hosted a crawfish boil in the snow and I bundled up and went over for a little while. Since when does it snow in Memphis when it’s almost April? Since when do crawfish smell like a paper mill? I think it might just be me.

I also managed a 3 mile walk on Sunday with my daughter, although I almost gave up a mile in after some persistent low blood sugar sapped my energy. Two glucose gels and a rest break fixed me right up. You would think after sleeping until 11:00 am that morning I would be running.

On that walk my daughter and I stopped to talk to a woman walking her dogs and she turned out to be Indra, one of my “cancer mentors.” A co-worker put me in touch with her a couple months ago and we spoke on the phone about her own experience with breast cancer a few years ago. I’ve never met her in person but recognized her voice after talking with her for a few minutes on the sidewalk. It was great to meet in person and catch up. It’s amazing how you are destined to cross paths with certain people.

When I washed my hair on Sunday, I noticed about twice as much as usual fall out as I combed and dried it.

Today I felt okay, just sapped of energy. Sort of anemic, really. I kept trying to move and do housework at my normal pace and had to slow down.

I’m hoping to be back to normal tomorrow. I wonder what color I’ll pee?

Doris the Bad-Ass Grandma (Chemo Round 1)

I had on my battle gear today, my warrior t-shirt and a big pink stripe in my hair. I’m ready to kill any wandering cancer cells that might be left in my body. It’s my turf and they invaded it.

It’s quite ironic that I’m here today to put toxic chemicals into my body. I have built a 20 year career around making sure people and the environment aren’t exposed to harmful chemicals.

This is how chemo round 1 went:

1. Take unflattering selfies in cancer center parking lot. They had a gourmet grilled cheese food truck today.

2. Sign in and wait for an hour.

3. Vampires start IV and take 5 tubes of blood.

4. See physician assistant.

5. Meet with chemotherapy educator.

6. People-watch in another waiting area.

7. Enter chemo room and pick a seat. Room is filled with recliners and IV stands. Chemo nurse reviews everything with me, I sign a consent to treat and she orders my meds from in-house pharmacy. They mix it immediately before infusion. First I get nausea meds, then saline, steroids, and finally the 3 chemo drugs. Two of them are injected into my IV and the third is an IV drip.

8. The welcome team stops by and gives me a welcome bag and I also get a high five for my pink hair warrior shirt attitude.

9. Nurse takes out IV, I make my round 2 appointment and we are finished, 4 hours and 15 minutes after I arrived.

As I was leaving, the woman who was sitting in the recliner across from mine complimented my pink hair. Her name was Doris and she was the picture of a Southern lady. Slacks, a sweater set, pearls and perfectly coiffed golden hair. I know that she is about to turn 80 in May, I heard her tell the nurse her birthdate earlier. Doris also complimented my spunky attitude and gave me the Redbook magazine she was reading and told me to take it and read the article about Amy Robach from Good Morning America. Like me, her breast cancer was discovered during her first mammogram when she was 40. My husband and I talked to Doris for a while and the conversation evolved like only a conversation with an interesting stranger can. From pink hair to Amy Robach to my diagnosis to my kids to her grand kids and eventually we landed on a football game in Jonesboro, Arkansas two years ago. Doris was driving her grandson there from Memphis, speeding to get him there on time. Her grandson looked over and saw how fast they were going. He looked at her and said, “You are speeding! You are one bad-ass grandma.”

I told her that’s probably the best compliment you can get from a twelve-year-old boy. Doris IS a bad-ass grandma. She has chronic leukemia and looks fantastic sitting there with her pearls, chemo, iPhone and a romance novel. I hope I see her next time.

When my son saw my pink hair this evening he said, “Mom, you look pretty.” “Oh, yeah?” “Yeah. Pretty cool.” 😊

Ready To Go

It’s spring in Memphis and the cherry and pear trees and daffodils are in full bloom. This year the weather is so erratic, changing from an ice storm to thunder to hot weather day by day, sometimes hour by hour.

This morning I went on another donut damage control walk, also hoping it would help with the side effects of today’s chemo. Two miles in, the dark clouds gathered and I turned around. Shortly after, it started raining. A few minutes later, I started running. Those of you who know me well know that I don’t run very fast. I’ve been chasing a 10 min/mile pace trying to get there for years with no success. But I was wearing thousands of dollars in medical devices that aren’t waterproof and in Memphis you never know when a drizzle will turn into horizontal rain or a tornado. So for the first time since surgery I ran, and IT WAS GREAT. Exhilarating. And the best part is that I have new boobs, and all the things that make them fake and weird make them great for running. They are smaller. They are semi-rigid. They don’t move. They are totally numb. For the first time in decades nothing bounced and my arms didn’t rub on my side boob chub. This will revolutionize jumping rope when I go back to Krav Maga.

I ran over a mile, all the way home with a smile.

I kicked off today’s walk with the song “Ready to Go” by Republica. After reliving my 90’s clubbing experiences (wearing all black, drinking 7&7s), I decided it was a good theme song to kick off chemo this afternoon. “Baby I’m ready to go, I’m back and ready to go, from the rooftops shout it out……[insert guitar solo].”

Day old donuts

In the past week I’ve eaten at least six donuts. They weren’t even all fresh. My recent sedentary lifestyle and the donuts are catching up to me. And the chips. I love me some kettle chips. My pants are a little snug.

Then this morning I got up and took the kids to school, came home, got back in bed and slept until lunch. I woke up, ate two donuts and went for a 4 mile walk.

This madness has to stop. Tomorrow is chemo treatment #1, it’s time for some healthy living.

Happy Monday

Last night I slept in my own bed for the first time in over a month. A sweet friend let me borrow a recliner before surgery and I’ve been sleeping in that chair since surgery. A couple weeks ago I slept in a hotel bed, but it took 7 pillows and lots of drugs, and I really didn’t get any sleep.

But this morning I woke up flat on my back in bed and pain free so I decided today was the day for some exercise. I walked 3 miles and felt great!

Belt AND Suspenders

Can you believe the cancer clinic is so busy that a food truck works their parking lot? And it’s only one of multiple locations.

Today I had an appointment with Dr S to review my Oncotype DX results (score of 21, low end of intermediate). The clinic was just slightly less overwhelming the second time. After checking in, I was surprised to be called so quickly.

Every time I go to the doctor, a nurse walks out with my chart, takes one look at my consonant-heavy Polish surname and calls out “Miss Elizabeth……” Today was no exception, except there was one other Elizabeth with a crazy last name about my age in the waiting room. And they called out “Miss Elizabeth…” three separate times and mixed us up. Be educated about your healthcare! If I wasn’t paying attention today I would have had unneeded blood drawn and been sent for a CT scan.

I eventually saw Dr S and he opened with a brief review of the Oncotype results. My low intermediate score really didn’t provide much guidance. He said it wasn’t surprising that the combination of my young age (bad) and strongly hormone receptor positive cancer (good) resulted in an intermediate score. Dr S said that the path forward would largely depend on my outlook and attitude about risk and chemotherapy. What is my risk tolerance? Am I willing to go through chemo for just a few percent risk reduction? There isn’t any data to direct me using the score. I felt like I was at work since my job revolves around discussions about risk.

Dr S said my age is the only reason he would “over treat” me with chemotherapy + tamoxifen. He said we wouldn’t even consider it if I was in my sixties. I’m concerned about the grade of my tumors, grade 3, meaning it was aggressive. And there were two, plus DCIS. He wanted to input my info into software that adjusts the Oncotype risk prediction for age. He stepped out and a few keystrokes later my risk prediction bumped up to 17% chance of 10-year distant risk of recurrence or metastasis.

We talked about it more and I won’t bore you with the details, but the outcome is that I’m going to do 6 rounds of CMF chemo and I shouldn’t lose my hair. I start next week and will have a round of chemo every three weeks.

It’s unlikely I’ll have any long term negative effects and the short term side effects are typically well tolerated. I’ll be nauseous and tired. Basically I’ll feel pregnant…..while concurrently being thrown into a menopause-like state.

I apologize in advance for the things I will say while nauseous and hot.

Things that make you go hmmm

Today I received my results from the Oncotype DX test and my score was 21. The Oncotype DX is a genomic test that examined a sample of my tumor for 21 genes that are predictors of cancer recurrence and metastasis. The score is used to help make treatment decisions.

This test is only for early stage (1 or 2), hormone receptor positive, HER2 negative breast cancer. My tumors ticked all those boxes. The test gives a score between 0 and 100 with a higher score representing higher risk. The scores are also stratified into low, intermediate and high. Low scores take tamoxifen, high scores do chemotherapy + tamoxifen and intermediate scores aren’t well understood as a predictor of the benefit of chemotherapy. There is actually a current clinical trial studying the benefit of chemo for women with intermediate scores, but results aren’t available yet.

My score of 21 is on the low end of the intermediate range. I’m not really sure what that means for me. Is it low enough that I can avoid chemo? Do all intermediate scores get chemo? Was this test useless for me? Hmmm….

I see the oncologist on Wednesday and should get more answers then.

On the Road Again

I had a follow up with the plastic surgeon today. Everything is healing nicely and I can drive! I drove home from the doctor! But it’s unlikely I’ll be going anywhere except my follow up with Dr P tomorrow due to the impending ice storm.

Oncologist #3

Today I met with a third oncologist, Dr S. He is part of a huge oncology clinic that sees over 400 patients per day. I’m pretty sure it had a coffee shop. After filling out 8 pages of paperwork and two iPad surveys I met the care coordinator, doctor and his nurse. 

I liked Dr S and his approach. He confirmed that I’m still considered Stage 1A even though there were two tumors, and that the isolated tumor cells (ITC) in one of the four lymph nodes they removed have been proven not to increase any risk of metastasis. I’m still considered node negative.

His approach is to send out the tumor tissue they removed for an Oncotype DX test. This is a relatively recent type of test that predicts the chance of recurrence based on my specific cancer. The test predicts low, intermediate or high risk and based on that result, low risk would likely mean I just take tamoxifen for 10 years. If it’s intermediate or high I would do chemo, then 10 years of tamoxifen.

My cancer was strongly estrogen and progesterone receptor positive, meaning it really likes hormones and feeds on them. The tamoxifen will block any estrogen.  It won’t let the cancer grow but between chemo and tamoxifen I’ll basically experience menopause this year. I just pray the air conditioning doesn’t break during my personal summer.

Dr S is in the camp of oncologists that don’t do additional scans of early stage non metastatic cancer. He said his radiologist would look at my CT scan and make a recommendation of whether I need to follow through in the PET scan, but anything on my lover shouldn’t be related to the breast cancer because it was isolated in the breast.

I’m probably going to go with this oncologist.

The next step is to wait two weeks for the Oncotype DX results. So I’m waiting……and watching a lot of HGTV. Maybe I should flip a house.

The case of the suspicious boob

I received the pathology report from my surgery. In Righty I had Ductal Carcinoma in Situ (DCIS) and two separate invasive tumors considered Infiltrating Ductal Carcinoma (IDC), measuring 8mm and 9mm. It is considered Stage 1B (m). The m means multiple tumors. I had 4 sentinel lymph nodes removed on the right side and 3 were totally clean but one had isolated tumor cells measuring approximately 0.1 mm. This is still considered node negative but I wonder if it will increase the likelihood of chemotherapy or a few radiation treatments to my armpit.

The tumor cells were histologic grade 3, which means they were aggressively dividing. This also makes chemo more likely but very effective since chemo kills rapidly dividing cells.

I had good margins, over 2 cm for the invasive tumors and 5mm for the DCIS. The margin is the amount of clean tissue surrounding the cancer that was removed.

Lefty was totally benign and I’m still happy I chose the bilateral mastectomy.

The recovery has been much better than I expected and the pain has been tolerable (with a little narcotic assistance). The numbness is the strange part. My frankenboobs are totally numb along with my right armpit. I can still feel the stretching and spasms in my pectoral muscles and I’m starting to feel some strange phantom sensations or nerves are starting to heal. I’m still very sore but I have almost full range of motion back on the left side and probably 80% on the right.

If you looked at me fully dressed, you wouldn’t know I had major surgery last week.