Freedom Tour -- Day Nine

I had one and only one mission yesterday, Wednesday, June 8: To go to SiriusXM's Elvis Radio station across the street from Graceland and meet one of the DJs, Jim Sykes, face to face,

Why Jim Sykes? Because he is one of my warriors, all the way in Tennessee.

Several months ago when I was still in chemotherapy, I commented on a Facebook post generated by Jim in which he asked a very general question, something like what's everyone doing today?

I had never responded to one of his posts before, but this time I did. I said I was undergoing chemotherapy for breast cancer and that I will win.

He responded with "Go Ann Erdman Go!" and ever since he has been so kind and supportive and encouraging every time I have mentioned anything about my breast cancer journey. Every time I have commented on one of his post over the months, I have begun my response with "Greetings from Pasadena, California!"

So I arrived at the Graceland Plaza across the street from Elvis's home and found the Elvis Radio station but didn't know if I would be able to do anything more than wave to him through the glass.

I got the attention of a security guard who was passing by and asked him to let Jim know I was here -- Ann Erdman from Pasadena, Calif. That did the trick, and Jim came out of the booth and gave me the biggest hug I've received in a long time from anybody! Then we chatted it up for a few minutes before he had to get back inside and continue spinning those Elvis platters (well, it's all digital now, of course).

I was so grateful to be able to thank him personally for all of his support, well-wishes and encouragement. His wife is a breast cancer survivor. Facebook brings people together in unlikely ways!

Then I went across the street to Graceland for my second visit since 2009. This time I had to make it quick because I had things to do and places to go!

I never get tired of looking at the stately mansion and the spacious grounds.

I'm especially grateful that Priscilla Presley and Lisa Marie Presley didn't turn the property into Presleyland, which would have ruined everything.

I took a self-guided tour since I was in a bit of a rush. The house is exactly as it was when Elvis was alive.

The living room:

The kitchen. Dig the avocado-colored coffee urn.

The TV room. Elvis heard that Walter Cronkite kept three TVs on at home, each tuned to one of the three networks. So Elvis decided to do the same.,

The pool room,

The Jungle Room.

The hand-carved arm of a chair in the Jungle Room. That's an ashtray on a wooden stand next to the chair, Today we call this kitchy, but back then it was standard in every home, whether on a stand or sitting on a table.

That's a waterfall and little pool against the wall in the Jungle Room..

Elvis had buildings constructed on the grounds behind the mansion. One is filled with press clippings, performance costumes, gold records, etc.

Descendents of Elvis's horses.

The Meditation Garden where Elvis, his parents and other family members are buried.

Then it was on to the Center for Southern Folklore in Memphis, the mission of which is to "preserve, defend, protect and promote the music, culture, arts and rhythms of the South."

It features a large archive of video and audio recordings, historic photographs, film, art and artifacts, all related to the mission. There's also a gallery of regional folk art and photos. Performers showcase local blues, jazz and other genres of music. The center also organizes the annual Memphis Music and Heritage Festival, which happens every September.

I left Memphis and headed toward Nashville, staying the night in Dickson, Tennessee, about a half hour from Nashville. I was hoping I may be related to William Dickson, founder of the town, but couldn't find a direct connection. (I come from a long line of Dicksons.)

I'm in Nashville as I write this.

Final thoughts about yesterday:

I am grateful for all of my warriors -- hundreds of you, near and far, in Pasadena, Memphis and everywhere else -- who continually encouraged me to keep my head high, have courage and continue fighting the breast cancer fight, even during my darkest days. I cannot adequately articulate what that love and support has meant to me. It has been palpable, believe me. 

And now that I'm coming out the other side and no longer tethered to Pasadena for treatments, I'm loving my Freedom Tour!

Stay tuned for tomorrow's blog post to learn about my adventures today!

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.

Adventures in Chemotherapy, Part 3 -- So long, farewell, auf wiedersehen, goodnight...

First, the good news:

After five long months (and seven months since being diagnosed), I completed my chemotherapy treatments on Nov. 24. (That's my oncology nurse Kristin in the photo above; the sign was made with loving hands by my daughter Jessica and granddaughter Kimberly.) Oh, and see my tiara?

I turned that final treatment into a celebration*.

The other good news: Two of the many side effects that plagued me daily for five months -- nausea and diarrhea -- are gone as of about a week ago.

One of the side effects that afflicted me for five months and forced me to stay in bed two to three days every week -- extreme, paralyzing fatigue -- is, thankfully, gone. The routine, daily cancer-related fatigue still lingers and will last up to a year or longer according to my medical oncologist Dr. Cynthia Martel.

And my "moon face" and weight gain caused by the powerful steroid Dexamethasone that I took for five months are just now beginning to diminish -- very slowly.

The not-so-good news: 

All of the other side effects are hanging on.

For example, I have neuropathy in my hands and feet as well as pain, discoloration and brittleness in my fingernails. I took this photo of my fingernails this morning (see the bands with darker color?):

It is such an odd sensation to have total numbness in my fingertips while, just on the opposite side, having such painful sensitivity in the dark part of my fingernails. There is only an inch or so of tissue in between, so it doesn't make a lot of sense to me. But then I'm not a physiologist. 

Another side effect that hasn't said goodbye yet is the truly annoying metallic taste in my mouth. The medical word for this is dysgeusia. I like the term metal mouth better. Try chewing on a ball of aluminum foil all day, every day. That's exactly what it tastes like to me. Using plastic forks and spoons instead of metal utensils has helped a little. 

For the first couple of months of my chemotherapy treatments I got really bad sores in the lining of my mouth and on my tongue. All that tissue is so delicate.

I'm still experiencing pain deep in the long bones of my arms, legs and shoulders -- femur, tibia, fibula, humerus, ulna and clavicle. I never know when it will strike, or in which bone(s). When I first complained about it to my oncologist, she said it was consistent with side effects of chemotherapy, but she ordered bone scans for good measure to determine whether the cancer had metastasized to one or more of my long bones. It hadn't, thank God.  

There are many other side effects that I look forward to bidding farewell to in the near or distant future, but I'll leave it at these descriptions for now.

My oncologist, Dr. Cynthia Martel, said it would take three to six weeks after the end of chemo for some of the side effects to dissipate and others will take their sweet time, in some cases up to a year or longer. 

In January I'll begin 30 radiation treatments, which I truly believe will signal the end of my cancer journey forever.

So long, farewell, auf wiedersehen, goodnight...

* On that last day of chemotherapy I asked my oncology nurse, Kristin, if everybody turns their last day into a celebration. She said she has been a registered nurse for 20 years, the last 12 of which have been in oncology, and she can count on one hand the number of her chemotherapy patients who have chosen to celebrate the occasion. She recounted the response of one female patient who, on her final day, said the following to her: "I hope you can sleep at night knowing that you poisoned me." It's shocking to me how many cancer patients choose to be bitter and cynical. That's just not my way.

Adventures in Chemotherapy, Part 2 -- Shining, Gleaming, Streaming, Flaxen, Waxen

My hair is beginning to grow back! The front and sides are a combination of white and light brown.

The back is almost all dark brown but very sparse, as you can see. There's a lot of scalp showing through:

Hair loss and chemotherapy go hand in hand. My oncologist, Dr. Cynthia Martel, told me there's no guarantee it will ever look the same again. But it might.

Will my thick, curly hair be gone forever, only to be replaced by a thin, mottled look?

Time will tell.  

My hair began falling out a week and a half after my very first chemotherapy treatment, which was on June 23. 

It was such a horrifying moment when, just minding my own business, I put a comb to my hair and a gigantic hunk came out. I didn't see that coming.

At the time, I was hospitalized in the oncology unit at Huntington for just over two weeks (long story). More and more hair fell out every day and was all over the pillow, sheets, floor, furniture, you name it.

Over the Fourth of July weekend I contacted my hairdresser, Patti Harmon, who owns Hair Studio in Montrose, and asked her if she could come to the hospital, take a pair of clippers to my hair and just get it over with. I figured losing my hair would be much less messy if it was very, very -- very -- short.

Although the holiday weekend was her family time and her shop was closed, she came right over and got the job done. She said this was a friend-to-friend moment, not a hairdresser-to-client moment. She wouldn't even accept a tip. I heart Patti Harmon!

She even brought me a hat and wore a white one in the same style herself. Solidarity!

There was still hair everywhere as it continued to fall out but now it was in tiny little lengths, not long, messy, stringy clumps. It made it much easier for housekeeping staff, too.

Less than a week later I was completely bald. (I lost my eyebrows a few weeks later.)

There was no choice but to embrace it and keep moving forward.

Which brings me to now.

It may take six to eight months for my hair to get to, say, shoulder length.

I'm patient. I can wait it out. And I have plenty of hats.

But someday...gimme a head with hair!

Adventures in Chemotherapy, Part 1 -- I Hardly Recognize Myself

I approached him at a get-together for a local nonprofit earlier this week.

I hadn't seen him in several months.

We served on a community board together a few years ago and have always greeted each other and chit-chatted when our paths have crossed since then.

The other night when I approached, he looked deeply into my eyes and said, "You look familiar to me but I'm having trouble placing you."

"Ann Erdman," I said, smiling. 

He was embarrassed. He hadn't recognized me in the hat that covered my bald head, the bare skin where eyebrows used to be, the look of fatigue on my face, my body a little stooped from bone and back pain.

"That's OK," I said. "I do look different. I barely recognize myself anymore!"

And then we chit-chatted just like old times.