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Saturday, March 26, 2016

Adventures in Breast Cancer: A Major Milestone

After 11 long months, including surgery and recuperation, five months of chemotherapy, hospitalizations for a collective five weeks and seven weeks of daily radiation treatments, I'm happy to say I recently had my final treatment! This 11 months has been the longest and toughest experience of my life.

That's my radiation therapist Craig in the top photo, taken about midway through the process. He was with me from the first treatment to the last. He, like every other staff member at the Huntington Hospital Cancer Center, shows such compassion and care to patients.

The side effects -- radiation fatigue and radiation burn -- were a walk in the park compared to the side effects of chemotherapy.

Radiation fatigue, which is cumulative, is a sleepiness that hits a few hours after treatment and requires a nap for an hour or two. And who doesn't need a nap? It is nothing like the extreme, paralyzing fatigue I experienced during chemotherapy. 

I still have chemo fatigue that will stay with me for up to a year, according to my medical oncologist Dr. Cynthia Martel, but this is a day-to-day, ongoing fatigue that affects my energy level but lets me get out and about from time to time and doesn't force me to languish in bed for two or three days in a row every week. I've grown accustomed to this lower level, constant fatigue and I know my limitations.

Radiation gave me really bad burns, including on my back (yep, the beams go straight through), and it got pretty serious. The biggest issue with radiation burn is potential infection from blistering and seeping, so I slathered (and still do) powerful prescription steroid cream all over my front and my back several times a day along with something called, ironically, Udder Cream to keep the skin soft. There was a lot of seeping in a couple of areas (now just on my left breast), and I use Neosporin for that. 

Radiation burn is painful like the worst sunburn of your life and also it's hot to the touch.

Here it was at its worst about a month ago. I'm only showing you my neck and shoulder, not the area that could get me arrested if I posted a photo of it! The shiny area at the top is seepage. I just realized the burn looks a little like South America to me. What do you see?

I started losing my hair about 10 days after my very first chemotherapy treatment and was as bald as Yul Brynner a couple of weeks after that. My eyebrows were next, a couple of weeks later. I remained completely bald for four months.

When my hair started growing back white and gray in October when I was in month four of chemotherapy, it was really off-putting. Dr. Martel had told me to expect my hair to look completely different. She was right.

Eventually I was able to embrace it and no longer recoil when I looked in the mirror. (Vanity is a funny thing, isn't it?)

One of the many ancillary services at the Huntington Hospital Cancer Center is an oncology cosmetologist, Yoshiko (Yo) Zeimen, who is an expert in "chemo hair." The powerful chemicals adriamycin and cyclophosphamide that make up what is known as AC chemotherapy really do a number on hair follicles, and then if the hair begins to grow back before chemo has ended (mine did), those chemicals cause each strand of hair to be coarse and brittle.

Every few weeks, slowly but surely, Yo clips short lengths of  "chemo hair" from my head. On Wednesday of this week she removed the last of it. Now every strand of hair is healthy, soft and chemical-free. 

Yo took this photo of me after my appointment on Wednesday:

You can see that the radiation burn, on the right side of the photo, now is a shadow of its former self. 

Here's Yo, who manages the Appearance Center, charges nothing, accepts no tips and provides additional services including selecting wigs and head coverings plus offering suggestions for skin care, which is a real challenge for cancer patients, and providing referrals for breast prostheses.

I contemplated a wig and talked to Yo about it a few weeks after I became bald but decided against it because I had become accustomed to wearing hats and that was fine with me.

Soon I'll start going back to my long-time hairdresser Patti Harmon who owns Hair Studio in Montrose.

The Taxol chemotherapy that Dr. Martel switched me to after the AC chemo caused peripheral neuropathy in my feet, which are completely numb and throw me off balance, so I'm walking with a cane now. I have it in my fingertips, too, and have to be careful not to drop things. Dr. Martel said it will most likely be a year or two and possibly up to 10 years before the neuropathy clears up. The nerves are asleep like Rip Van Winkle and will awaken in their own sweet time. But I've gotten accustomed to it and it's honestly the least of my worries these days. 

I started weekly acupuncture treatments at the cancer center last month at the recommendation of Dr. Ruth Williamson, my radiation oncologist, and hopefully that will help. I've gone in once a week since Feb. 12 to have Suzie Kline work her magic. So far I have felt a brief little sensation of warmth a couple of times in the bottom of my left foot that didn't last long. Time will tell.

Here's Suzie, who is an oncology nurse practitioner and licensed acupuncturist. She manages the integrative oncology unit at the cancer center, which includes acupuncture, massage therapy and hypnotherapy. I want to sign up with one of the massage therapists soon. Perhaps that will help wake up the nerves in my feet. Heaven knows.


A very powerful steroid called Dexamethasone, associated with chemotherapy, is still in my system and is diminishing slowly. It caused Cushing's Syndrome, which made me bloat up like a big balloon, including a "moon face" that thankfully has been coming down gradually, and enormous weight gain that also is decreasing. It was a horrible experience. My primary physician, Dr. Marina Manvelyan, estimates that I'm probably still carrying about 25 to 30 pounds of additional weight as a result of that steroid. 

Here's my moon face at its worst last November:

This 11-month journey has been extremely difficult, but through it all I got into the discipline of finding something to be grateful for every single day. 

The other day I was waiting in line at CVS to pick up a prescription. A young woman with a new baby was standing in front of me as the infant began to wake up and coo softly. I was so grateful for that precious sound emanating from those brand new little vocal chords. It was a beautiful moment -- just one on a long list of so many over the past several months that have helped me get through this ordeal.

I am alive on this earth, and that is greatest gift I could ever have wished for. Keeping all this in perspective is part of the process.

In May Dr. Martel will order a combination of scans, ultrasounds, a new mammogram, blood work and more, and then my medical team, including my two oncologists and Dr. Jeannie Shen, my breast surgeon, will meet with me to discuss the results. 

I have decided I will only entertain good news. I simply cannot accept anything less after this long struggle.

Thank you all for your kind thoughts, your prayers and your caring messages all along the way, and many thanks to each and every one of you for being my warriors, inspiring me and encouraging me in so many ways. 

It's not over yet. I'll still be going regularly to the Huntington Hospital Cancer Center for follow-up appointments with oncologists as well as acupuncture and breast cancer group therapy and I'm also seeing a nearby psychologist who specializes in breast cancer patients, recommended by Dr. Williamson for one-on-one talk therapy because this ordeal has been a lot to reckon with. The stress, grief and fear associated with cancer is monumental. 

And then there's May to look forward to. I need to know for sure that I have slayed this dragon with your help.

So as I move forward, even though there is much to celebrate, I still need my warriors! 

I love you all.