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.

Radiation: The Halfway Mark

For 16 weekdays at 8:30 a.m. I have been quietly undergoing radiation treatments.at the Huntington Hospital Cancer Center. I have 14 to go and will resume on Monday.

Compared to chemotherapy, radiation is a walk in the park.

I am experiencing two side effects of radiation, also known as radiotherapy. One is a fatigue that is just a temporary sleepiness later in the day that requires a nap for an hour or two. This started hitting me four days ago. (In chemotherapy I experienced extreme fatigue that kept me debilitated, in bed, unable to function three days a week.)  

The second is the equivalent of a bad sunburn. I took this not-so-good selfie last night of my left neck and shoulder area. It's also on my left breast, but I'm not showing you that!

Four times a day I slather on creams provided by my radiation oncology nurse to keep my skin soft and prevent peeling and/or blistering, which could lead to infection.

The back door of the cancer center is adjacent to the radiation oncology area. I have a special magnetic card that I swipe to get in. 

I go straight to a dressing room to put on a hospital gown, put my clothes and purse in a locker and take a seat in the comfortable waiting room until someone comes to collect me for treatment.

A little levity in the waiting room:

The radiation room has a very relaxing, spa-like atmosphere with soft, soothing music playing in the background. 

I lie on the table while two radiation therapists align my body perfectly so the beams will do their work properly. Four areas are treated, including the lymph node area under my left arm.

Simply put, radiation is used to destroy undetectable cancer cells and reduce the risk of another cancerous tumor recurring in the affected area.

This machine, an Elekta Linear Accelerator, is what is used on me. You can see part of it in the upper right corner of the photo above, which I snapped.

During treatments, the table remains stationary and the machine rotates around me to deliver the beams to the four specific areas.

If you're as fascinated as I am by how things work, take a look at this video to learn more about how the radiation is delivered.

After my radiation therapy has been completed in a couple of weeks, I will have a series of scans, ultrasounds and what my oncologist calls targeted blood work.

I'm only slightly terrified about the outcome. It will just have to be good news because this has been the most difficult experience of my life and I would like to bid it adieu.

• I was diagnosed with breast cancer in April. 

• Surgery was in May. 

• Chemotherapy was from June to November.

• Radiation began in January and will end in early March.

In the midst of the fear, stress and turmoil, I have found so much to be grateful for every day and have continued to put one foot in front of the other. Isolating myself and going through all this in silence simply was not an option for me.

I want to give a shoutout of thanks and praise to all my steadfast warriors who have supported, comforted, inspired and loved me through this.

I look forward to the day when I can say, "I am a breast cancer survivor."

Photo credits: Ann Erdman, Mayo Foundation for Medical Education and Research, Elekta, Victory Store.

Preparing for Adventures in Radiation

  

Two weeks ago I had a consultation with Dr. Ruth Williamson (above), the lead radiation oncologist and medical director at Huntington Hospital's Cancer Center. 

"One of your nodes was positive for cancer

and it was a pretty significent deposit 

and there was some extension of cancer cells

outside of that lymph node."

The entire first floor is made up of cancer testing and treatment facilities, all in a spa-like atmosphere. This is one of the radiation rooms:

 

And this is one of the waiting areas, with a soothing water feature.

Another nice touch in a waiting area:

"The two most common side effects are fatigue 

and radiation sunburn. If you have an area 

that peels, that can potentially be harmful 

and cause infection, so I want to hear from you about that right away if it happens 

so we can modify what we’re doing."

I had been quite anxious about this meeting with Dr. Williamson for two reasons: radiation was a scary concept to me with that great-unknown factor; and I had been given the gift of all of December off from cancer treatments to give my body a post-chemotherapy break, so I equated this meeting with having to face the reality of my situation again and I wasn't exactly anticipating that with relish.

My friend Judy Kent came with me so I wouldn't have to go through it alone and so I would have a second set of ears in the meeting. As we sat in a waiting area after checking in, I wanted to run for the door in a panic, although I didn't articulate this to Judy.

Why couldn't all this just be over with? Why did I have to deal with any of this at all? Why couldn't I just hide under my bed in a fetal position in hopes the reality bogeyman would take a flying leap?

But here we were, and that was that.

"With the CT scan I want to see where your affected breast tissue is. I want to include 

your lymph nodes. And then I’ll do a 
plan for treatment with a physicist."

After giving me a full examination from head to toe, including a breast exam, Dr. Williamson explained why I need radiation, what to expect and much more. It was somewhat overwhelming, which is why I was pleasantly surprised that she audio-recorded the meeting and handed me the CD when we were finished.

The purple-colored quotes sprinkled throughout this post are from that meeting, spoken by Dr. Williamson.

"If we don't treat your breast, you have 

a 30% risk of the tumor coming back 

smack dab in the same place."

OK, she had my attention. Gulp.

I went back a week later for a CT scan and to get four little tattoos on my left breast so the radiation beam can be targeted to the same precise spots each time.

"If I do have to come in from the front 

with an extra field, the possibility 

of lymphedema is what will 

keep me awake at night. We’ll just have to 

monitor you very, very closely." 

The radiation therapist, who will be with me throughout the treatment process, is a male. After he greeted me in the waiting area and escorted me to a CT scan room, he showed me where to change out of my blouse and bra and put on a gown.

He said he wanted me to know that if I preferred a female radiation therapist, he could arrange for that. He wanted to make sure I was completely comfortable.

No, I said. I trusted he had seen it all before.

Here's what the Philips Big Bore CT machine looks like:

Before the 10-minute CT scan, while I was lying on the table with my left arm extended up and to the side, Dr. Williamson marked four spots with a Sharpie where she wanted tattoos applied, drew some lines here and there and took some photos.

After the CT scan, during which I was inside and then outside and then inside and then outside the tube, my radiation therapist introduced me to the man who would be giving me the four little tattoos.

My only frame of reference with tattoos had been watching a couple of episodes of reality shows about tattoo parlors.

So I didn't really know what to expect. The tattoo technician didn't have one of those tattoo parlor drill machines after all. Instead, he had four thick needles, each filled with dye.

He never said one word. Not one. I couldn't see what he was doing, nor did I want to. As he felt around my skin a little bit, my radiation therapist suddenly blurted, "You're going to feel a stab!"

And a stab it was. A violent one. In four places. Four stabs. Thank goodness the radiation therapist said something as Tattoo Man was poised to strike, because Tattoo Man wasn't talking. Sadist.

"I do have some women who absolutely 

do not want to get the tattoos. They want 

the stickers, which can certainly be applied, 

but the problem is that stickers 

can fall off or shift a little bit."

Here's one of my little tattoos:

So now you're up to date. I'll go back one more time before radiation treatments begin, this time for a trial run on the machine without any beams beaming. 

"The only permanent skin color change 

will be the areola, the dark area 

around the nipple. It might end up 

somewhat lighter in color or even 

a lot lighter than the other side." 

Oh, joy.

Stay tuned for more Adventures in Radiation...



Photo credits: Ann Erdman, Huntington Hospital, Philips, Smarter Every Day