by Joan Lunden
I wish I’d had more time with my dad to know him better. I can’t help but wonder what greater influence he would have had on my life.
With a growing practice, Dad recruited several other young doctors to his Sacramento office so he could concentrate on what he loved and did best—surgery.
I later learned from my dad’s colleague Dr. Marvin Klein that he had a patient with a blockage in a major vein leading to her leg. The patient faced losing her leg or, worse, dying. There were no vascular surgeons in Sacramento, so my dad placed a call to renowned cardiac surgeon Dr. Michael DeBakey, at Baylor College of Medicine in Houston, Texas. Dr. DeBakey pioneered the first artificial heart in a human. Dad told Dr. DeBakey that he needed to learn how to perform this surgery to save a patient’s life. He explained that he would fly himself down to Houston if DeBakey would agree to teach him to do the surgery. DeBakey happily agreed. My dad spent a week following him from one operating room to the next, learning about heart and vascular surgery, until he could return home to safely perform the needed surgery and save the patient’s life.
I would never have known that story had I not set up those interviews with my dad’s colleagues. Those tapes are among my most prized possessions.
By the time I was in first grade, my dad had become one of the top surgeons in our area. Several years later, he began to specialize in oncological cases. At the time, there were very few surgeons who specialized in cancer. He would sometimes fly to other cities to assist doctors on difficult cases. As a little girl, I remember standing with my mom and brother outside the big double doors of a hotel ballroom, watching my father at the podium to address a roomful of hundreds of doctors who were there to learn from him. I was too young to understand the importance of that back then. Only now, battling cancer myself, can I fully appreciate the significance of those moments and comprehend that my dad was one of the pioneers in the battle against cancer. He was out there in the world, valiantly trying to save lives with whatever methods they had available at that time. I have no doubt that he would be amazed to see the advances in the field of oncology. Perhaps he does see it all from somewhere beyond.
Gosh, I hope he does.
Simply imagining that he somehow watched me read the email from Tracy made me smile from ear to ear, and gave me a good case of goose bumps. The fact is, Tracy would not have been born had my dad not saved her grandmother’s life with that radical mastectomy.
There are no coincidences in life.
No accidents.
Sure, I knew my dad was a cancer surgeon, but somehow it never hit home that he was operating on women who had breast cancer—not until I read that letter.
Somehow I knew my father just a little bit better.
What a gift Tracy gave me.
I woke up the next morning slightly nauseated, and I immediately noticed that I felt fatigued.
This was the day I was told I would start to feel the real effects of the AC chemo.
Or maybe it would happen the next day.
Or maybe it wouldn’t happen at all!
I spent a good part of my day resting—okay, sleeping—which was highly unusual for me. I was definitely having one of the crummy chemo days everyone had told me to expect, but it wasn’t that bad.
I knew that I would lose my hair again, as the AC chemo attacks the hair follicles. Dr. Hollister had laughingly told me at the outset of this round of chemo not to fall in love with the peach fuzz that had grown back during the month since I’d ended the first round of chemo.
He was right; I had fallen in love with it. I’d asked Emir to come to my house to bleach that little bit of peach fuzz on my head so I’d once again be a blonde.
I know. I know.
It was all going to fall out, but until then I’d be a blonde, kinda, sorta.
After reading Tracy’s email, I became a little obsessed with what I would find in my in-box each day.
I needed to keep things light, because I’d heard horror stories from other women about the AC chemo. I didn’t want to feel sorry for myself.
I also heard success stories from people who wanted to cheer me up and inspire me.
Sometimes the letters were just to lend advice.
I always love getting advice, such as what I got below:
Date: Friday, October 24, 2014 5:06 p.m.
Subject: Ask Joan Submission
Name: Susan B
Question: I don’t have a question, just a note from one warrior to another. I’m 54 and 4 years out from triple negative BC. I had a lumpectomy, 12 weeks Taxol, 4 rounds with the Red Devil, and 23 shots to keep my white count up. I had 7 weeks of radiation. What did I do? I danced almost every week. I love country music, so I kept dancing, just like I did before BC. Maybe not as much, but I was out there. I was a blonde. I was a brunette. I took a kayak lesson after I finished everything. I fought, because that’s what warriors do.
Breast Cancer Awareness Month had been a dizzying adrenalin rush for me, but the real thrill was the reconnect with the American public that came with my appearances on the Today show. I spent days going through the messages and emails I received from thousands of people, I had such a desire and need to get back to as many as possible.
So many women.
So many stories.
So much sharing.
I took a look at Facebook to see what people were saying.
* * *
My name is Barb Miller, I am a single 50-year-old woman who lives in Belmar, NJ, and I was just diagnosed with breast cancer and I just read your story. God bless you and may your recovery go amazingly. When I found out last week, I was in my car getting ready to leave Target, and I was told that I had breast cancer and I needed to come in right away for an MRI since the biopsy came back showing cancer. I have had my MRI and now tomorrow I sit with the doctor and find out what’s what. You are so right, it happens so fast and it goes so quick and I am praying my survival skills and empowered-woman skills take over after I digest the news. I am not working and am single and my family has all passed away, so it is me and my dog Lucy and a few amazing women who will get me through this with stories shared by women like you. Yes, I can’t even deal with the knowing of money and insurance issues right now and I have no clue of my path, chemo radiology lumpectomy etc., but when I hear it I will digest and do what I think is best for me and let silence and peace fill my soul. Thank you for sharing your story, I will follow along. Blessings, your friend Barb from Jersey
* * *
When I read a message like this, I felt like finding out where Barb lived in New Jersey, getting into my car, and going to her home to comfort her. I knew how difficult this battle was when you had a fabulous support system around you, so it was sad to hear from women who don’t have a strong circle of support. And though I knew it wasn’t possible, I wanted to be there for all of them.
* * *
Dear Joan,
I watched you on the Today show and you are truly an example of strength and encouragement. My breast cancer was in 2011 and ovarian in 2012. I carry the BRCA gene and would like to help others with breast and ovarian cancers. I am now two years NED (no evidence of disease—a term that you will come to cherish) . . .
The spotlight that you have courageously shined on breast cancer shows me that I can be an example to others too. If I can be of any help, I am happy to share the story of my journey with you. In the coming difficult weeks, I hope you have many good days.
Kind regards,
Wendy M.
* * *
Because of this message, I learned a new phrase that I was excited to add to my vocabulary. Wendy M. was right, NED was a term I would come to cherish. It’s definitely on my bucket list!
In addition to the many well-wishers, some people wrote to give me useful tips and information. One gentleman seemed to know an awful lot about the digestive issues that occur when you are on toxic chemo, especially not being able to go to the bathroom. Some call it “chemo tush.” I was very interested
to hear his advice about having someone push on your back in a certain way to “get things moving again.” He didn’t explain how to go about pushing and where the spot was, so I wrote him back to find out. I was way too curious not to ask about this technique, even if it proved to be for my own personal amusement: Hi Bill, I’m really curious about your ideas, especially at the moment, because I would love to “get things moving”—how exactly do you do that maneuver? What I really felt like writing was Hi Bill, I am totally full of shit . . . Just kidding, of course, but if you didn’t keep your sense of humor, then it all got to be a bit much!
And then, among the well-wishers, there’s always someone out there who feels it’s necessary to throw a dart at you, just because. I call them the haters. Often they have some agenda that inspires their caustic criticism; other times I assume they’re just having a bad day themselves. Nevertheless, they are haters.
* * *
I’m Shannon and a 6-year (& counting) survivor.
I’m happy that you’re kicking cancer’s ass, however I feel that your touched-up photo leaves me . . . [I think Shannon was speechless because she forgot to finish her sentence!]
When normal women go thru this they usually don’t have a full makeup team to pull them thru the hard days.
It’s easy to be a role model, but even more inspiring . . . show the world, the real fighter! I wish you more luck than you’ll need.
Shannon M.
* * *
Yep, that’s Shannon M., and she’s a hater.
Okay, let’s be totally real for a moment . . . or should I say NORMAL!
How’s that, Shannon?
Among the many lovely Facebook messages that I went through, doing my very best to answer as many as I could, there would always be those few haters in the crowd. Shannon M. thought I’d sold out on my bald People cover because I’d obviously had my makeup done.
Really?
I sometimes wanted to engage people like this, to try to kick them back and tell them I wasn’t posting a bald shot on my Facebook page or taking some selfie, for Pete’s sake, I was shooting a cover for a national magazine. They brought their top photographers and makeup artists, and guess what?
That’s life.
Sorry if it offends you.
However, my daughters who work with me always have a hissy fit whenever I engage with anyone who isn’t nice on social media, so I have to just let it go.
I did.
But then I went back and copied and pasted it so I could rant a little later.
I went on a pretty good tear in the privacy of my journal.
There’s a lot of things I wanted to say and I got them out on paper.
You know what?
That felt pretty damn good!
Hey, you can’t make everyone happy.
CHAPTER 27
My New Normal
The best side effect of fighting a life-threatening disease is learning how to live.
JOEL SIEGEL
Movie critic on Good Morning America, diagnosed with colon cancer in 1997
While I had finally gotten used to seeing myself wearing wigs, I can’t honestly say that I would ever get used to looking in the mirror and seeing a woman with no hair, no eyebrows, and no eyelashes. It stopped me cold every time I caught a glimpse of that barely recognizable woman. It had been nearly nine months since I shaved my head, so in many ways, it had become my new normal, and yet there was nothing normal about it.
I sometimes looked into my children’s eyes and wondered what they were thinking.
Really thinking.
I will admit, we didn’t do a whole lot of talking about my disease.
My husband and I decided early on that he should be the one to do “Mommy updates,” so the kids would feel free to ask questions about my health or prognosis that they might feel uncomfortable saying in front of me. For kids, the unknown is always scarier than the reality, so we wanted to give them that open forum. I recently asked Jeff if they were expressing any fears that he wasn’t telling me about. He said he felt that kids were resilient and that this had become their new normal, too.
I wasn’t sure how I felt about that. I didn’t want Mommy being sick to be their normal any more than I wanted it to be mine.
That was compounded by the fact that the second round of chemo made it much more challenging to keep up my usual “I’m fine! None of you have to worry about me” facade. The toxic AC chemo dealt me a blow right out of the gate.
As it turned out, the toughest part of my battle was this poison—oops, I mean terrific medicine that killed the cancer cells that had taken up residence inside me but also brought me to my knees.
Once I started the second round of treatment, the phrase “chemo brain” became an often-used phrase around our house. I will blame every forgetful moment on chemo brain from now on—before and after the cancer.
Seriously, though, you are simply not yourself.
I also blame chemo brain for my inability to read longer than five minutes at a time.
While I’d planned on doing an incredible amount of reading when I was down for the count on chemo, I would lie down with my Kindle, so excited to pick up on a story that I was involved in, and within minutes, I would close my eyes. My eyelids grew so heavy, I simply couldn’t keep them open. As much as I adore devouring good books, I didn’t have the mental energy to read. So if you’re going through chemo and you fall asleep while reading this book, I won’t take it personally, I swear. I completely understand!
As my chemo progressed, I went out of my way to make my life very simple. I didn’t tend to get dressed up, and I wore very little makeup. It’s funny—when you dance with death, trivial things become less important. And somehow my face with a bald head and no eyebrows just didn’t call for a lot of makeup.
Instead, I became totally focused on taking my supplements, what I was eating, getting in my workouts, and rest. It was all about taking care of myself and winning this battle.
I couldn’t wait until my new new normal became the old me.
After the buzz of the People cover wore off, I began to wonder when my hair would grow back and, when it did, what it would look and be like. I’d heard so many stories from people who had been through this: People with straight hair all of a sudden had curly hair, and sometimes it came back a completely different color. I was also told that due to the trauma, it could grow back silvery gray. Someone else told me that the first growth makes you look like a Chia Pet.
Gee, I could hardly wait for that.
So what would happen with mine?
Would it grow back curly?
I’d never had curly hair—wavy, yes.
I admit that I became oddly consumed by thoughts of when my hair would grow back.
Two months?
Six months?
I just wanted to look in the mirror and see myself again, normal Joan.
In the meantime, there was still a lot of work to do to get there.
Aside from the onset of a nasty cold, I thought I was doing pretty well.
Okay, wait.
I was actually quite worried about my cold. It was nothing but a normal lousy cold, but I was scared that I wouldn’t have the immunity to fight it. I thought it would negatively affect my blood counts and jeopardize getting my next infusion. The longer I waited, the longer it would take to get through this round, and I just wanted the nightmare to end.
I was sitting at the desk in my home office, working at the computer, when I merely rubbed my right eye and a clump of eyelashes came off in my hand. I’d put mascara on my lashes that morning for the first time in ages because they had been growing back in so nicely. Although I’d lost my hair, eyebrows, and eyelashes once already, it’s still shocking to see hair of any type fall out in clumps when it is supposed to be permanent on your body. I felt sick to my stomach, because this was another reminder that I was far from the finish line. I had three more rounds of chemo to go, and things were going to get harder before
getting better.
While it’s true that the second round of chemo was more physically challenging than the first, it wasn’t nearly as bad as I’d thought it would be. Yes, there were some bad days, but I had prepared myself for much worse. It was manageable. Yes, I was greatly fatigued, and there were some uncomfortable digestive issues, but I’d had those with the first round, too, and over-the-counter remedies and eating clean had helped with that challenge.
The biggest difference between the first round and the second was mouth sores. While the chemo was killing off cancer cells, it was also killing off my good cells, especially cells on the inside of my mouth. When it does that, it changes your sense of taste, sometimes eliminating it completely. This can cause sores and inflamed taste buds on your tongue. At first I was only experiencing what I will refer to as “raised sores,” which got better pretty fast.
Thank goodness!
However, because of my cold, whenever I put a cough drop in my mouth, it became instantly painful, so I’d have to remove it right away. And whenever I took a little DayQuil or NyQuil for relief, it was like putting battery acid in my mouth. Even Biotène, an oral rinse I was told to use to counteract and keep this condition at bay, became rather challenging; I quickly learned to tolerate that discomfort, because I knew the rinse would help and the pain would subside once I spit into the sink.
I started noticing that hot food and liquids were especially tough on my mouth. This was one of the scariest parts of chemo for me, because it made it hard to eat, drink, and feel normal.