Archives for posts with tag: Coping with cancer

You remember who was in the chorus of the Gene Wilder musical classic? Yes, the Oompa Loompas. And what color were the Oompa Loompas? Yes, they were orange. And what color were my roots after using an unfortunate shade of Clairol Natural Instincts? Yes, they were a very deep shade of overripe cantalope. “Natural” Instincts, my ass!

I’ve never messed up a hair color before but I haven’t done it myself for several years and apparently, Clairol Natural Instincts uses a totally different formula as they did when I last used their products. And they are on a melon kick! Not to be seen in public (other than going to Target to get a fix for this), I used a non-permanent, normal looking reddish brown dye today. Ah, much better. Most of the melon is gone.

The Oompa Loompas would say that my parents are to blame for this mishap (“…the mother and the fa-ather”). However, the same thing happened to my mom and she warned me about it. When did I remember this? After I rinsed the color out of my hair! So, I’ve decided to blame Roald Dahl.

It will be so nice to be able to go back to the salon. It will happen.

P.S. The color was just like this except MORE orange. No lie.

The Oompa Loompas after disobeying their lax parents in the Clairol Factory and falling into a vat of Natural Instincts “Dark Auburn.”

These are the three words I started saying to myself about seven years ago. At the time, I had started Weight Watchers and found this trio helpful in motivating myself, dealing with set-backs, and staying the course. I ended up losing 43 pounds, then gaining 10, then gaining 10, then losing 20… I have also used them to deal with other life challenges. To me it conveys a learning process–knowing when to stop and wait, when to keep trying, all the while working toward a peaceful place of balance.

I think a lot about balance. My balance right now is tenuous. The three P’s are being put back into place in a major way. Dr. Beatty called last night to give me a brief overview of the final pathology report. He had given me preliminary results on Monday, which were confirmed. The tissue removed in my last surgery contains stage 0 cancer and one area of invasive cancer. The areas are not contiguous, which suggests that I have multiple cancers in my breast. Dr. Beatty prepared me for this on Monday and I made an appointment for a plastic surgeon for next week for an initial consultation. Dr. Beatty is recommending a mastectomy and I am scheduled to have it on August 8th. I don’t know the full pathology report and I have many questions to ask him. Although I’m not happy about the news, one bit of relief is that their finding another invasive tumor makes it easier for me to decide to proceed with surgery. As you may recall, the results of the 1st pathology were somewhat inconclusive. The pathologists described a 2.5 cm area of breast tissue as, “atypical ductal hyperplasia bordering on ductal carcinoma in situ.” ADH is not cancer but DCIS is cancer, albeit a non-invasive cancer. Basically, they weren’t sure but came down on the side of treating the area as DCIS.

As a diagnostician myself, I understand this. Sometimes my diagnoses are not slam dunks and there may be some discrepancy or lack of clarity. Sometimes I recommend further evaluation, or monitoring and later reassessment, the latter because time can often provide additional diagnostic clarity. But other times, I am unwilling to risk a child not having access to a potentially highly effective treatment. In those cases, I use my clinical judgment. The risks are greater for these pathologists so I imagine that they often take a “better safe than sorry stance.” I was fine going with “ADH bordering on DCIS” for a second lumpectomy but was unsettled with the prospect of a repeat this time and giving up my entire breast based on those kinds of results. But this second pathology report is clearer and I feel that my decision-making is more soundly grounded in “what is” rather than “what if”.

My next big results are the oncotype testing results. I really hope they come back as low risk for recurrence so I don’t need to have chemotherapy. The prospect of losing some of my very best physical features is discouraging not to mention just feeling dead dog sick. I remember how much I enjoyed the nausea, vomiting, and crushing fatigue of pregnancy. I enjoyed it so much that I’ve formed an informal network of friends who like me, love children, especially our own but did not enjoy pregnancy at all. I won’t name any names because it can be stigmatizing to admit that pregnancy wasn’t the powerful earth mother experience that others talk about. I did have a good childbirth experience, although I did ask for medication early and often, which is also a controversial thing to do. Although I have seen some women friends proudly post on Facebook things like, “little Johnny was born weighing 7 pounds following an unmedicated birth”, I haven’t seen anything like, “little Zoey was born weighing 8 pounds after blasted out with a cascade of petocin followed by my OB using a plastic stick to manually break the ambiotic sac, followed by the administration of some opiate that did nothing for pain, followed by a botched administration of an epidural (if the anesthesiologist misses the epidural space, the drugs don’t work), followed in an hour by an effective epidural, which left me in such relief that as I saw the I.V. bag empty down to just what was left in the tube leading to my arm, prompted me to ask twice, “Are you sure there’s enough in there?” and to reassure hospital staff that I would be good for the money if my insurance wouldn’t cover another bag of magical drugs.

Okay, triple P’s. I’m hoping, waiting, and breathing.

My cousin, Beth and I were venting about our crappy summers this morning. We are both tired of our respective difficult and unexpected life circumstances and were trying to cheer each other up in our classic, rapid back and forth flurry of emails. (Sometimes, we employ the variation of rapid texting.) So after a couple of game tries at traditional emotional support I wrote:

Hey, remember that episode of Speed Racer when Speed and Racer X both get injured with one of them breaking a leg and the other being blind and they were able to work together to get to safety? We can limp along together, hand in hand, into safety ourselves! Wanna be Racer X or Speed?

Beth picked Racer X because she said that she is “meaner” and although I suspect she is nominating herself as Queen of Mean out of her usual generosity of spirit, I did let her choose. Also, I don’t remember Racer X being mean but come to think of it, I don’t remember his personality at all. So Speed I shall be from this day forward.

Surgery went well and I am resting at home. Dr. Beatty reassuringly squeezed my foot as he left after we had our pre-op talk. My first thought? “I have to tell my mom!”.

This is the email my mom sent to my last night after hearing about the clear PEM scan. (It still won’t make total sense so I’ll explain it later in the post.)

Hi Liz,
I was so relieved that I forgot to wish you well on the lumpectomy.
Hope all goes well. We love you so much.
All week I kept hoping that Dr. Clark would squeeze my foot
and tell me you’d be OK. I guess he did.
Okay, so here’s the explanation:
I was a preterm baby born with respiratory distress. My body was not yet producing sufficient surfactant, which allows lungs to inflate with air and keeps the air sacs in the lungs filled with air. Back then, physicians didn’t know how to treat it so the prognosis was more touch and go. JFK and Jacki Kennedy had lost a baby a couple of years previously from respiratory distress. (For years, all I knew about my rough start in life was that my lungs weren’t fully developed and that I had the thing that the Kennedy baby had.) To make a long story short, it wasn’t clear that I was going to survive. My mom’s OB/GYN, Dr. Clark was talking to her while she was in the hospital. I imagine that she was alone. She had 4 other children at the time so I am guessing my dad had them at home. Seeing that she was scared and tearing up, he squeezed her foot as he left the room. My mom has spoken of this event many times over the years so I know this little gesture meant a great deal her.
So when I told my mom about this she said, “You need to write about this in your blog!”
So hospital physicians out there, we like the foot squeeze. We give it two big toes up!

Yesterday, I saw a young woman waiting for the elevator at the Swedish Cancer Institute. She was probably in her late 30’s. She wore well-fitting jeans (not tight, just right), a top, and a cute little hat on top of her nearly bald head. I thought, “She’s rockin’ that look.”

I smiled at her, said “hi”, and we both got on the elevator. She saw my Swedish tote bag, which identified my membership in the cancer club. She remarked that she had carried hers around for months but it made her feel like a nerd.  I joked that I called it “my big ole’ bag o’ cancer.” It ended up that we were both headed to the surgery clinic. We chatted a bit more as we waited to check in. She seemed smart and friendly. After we checked in, I joined John who was already in the waiting room and she sat in a different section of the room.

After several minutes, she walked over and said, “I hate waiting. Would you like to chat?” We introduced ourselves and talked for a few minutes. Jen had also just gotten surgery but this was her second surgery. She had also just completed a round of chemotherapy and it was likely that she would complete another one. I wish I’d gotten a chance to talk with her more but I was called in for my appointment soon after she joined us.

Jen looks really young and she’s had a lot of treatment in the last 7 months (she was diagnosed in December). Despite these sobering facts, I was reassured by her. Two of my biggest concerns about cancer treatment are having energy and if I should ever need chemotherapy, changing the way I interact with the world because I would be an obviously ill person. But Jen had enough energy yesterday morning to take care in putting together an outfit, which she rocked. (I know that she had just finished chemotherapy so she probably felt worse earlier but still.) She also engaged with me, a stranger in an upbeat way. I’m sure she gets lots of looks and has the frequent dichotomy of experiences where people either avert their gaze and ignore you or approach you and talk about your illness even though they are a stranger. But still, her presence was reassuring.

If I don’t see you again, Jen keep rocking the hat and I wish you a speedy recovery from this point on.

(c) 2012 Zoe H.

Zoey had an art assignment to do a portrait of herself displaying an emotion. She chose to draw herself displaying shock. I’m not sure the assignment was due before or after I told her that I had cancer, but I thought it showed one aspect of this experience very well. She seems to be doing pretty well, by the way so try not to worry. Or as John put it, “Wow Zoey, that’s really good. I’d put it in a frame it if it weren’t so horrifying.”

P.S. Zoey would probably want you to know that she was only given three days to complete this assignment as an explanation for why it is not somehow fancier or better in some way. I think it’s fabulous even if she’d spent the whole year on it. And given that I’m still working on Stick Figure Drawing 101, if I’d drawn this, I’d probably have it tattooed to my forehead.

I have a bit of a headache this morning. Yes, I had the wonderful news yesterday about my genetic test results. I really was quite elated. I’m still very happy about it deep down, but at the moment I am feeling a bit numb. I told a lot of parents about my cancer and a couple of teens. One of them is a girl I just started seeing again for counseling after a couple of year gap. Her mom just finished a really aggressive experimental treatment protocol for cancer (not breast). Ugh. This is not the kind of thing I wanted to have to tell her. The conversation went relatively well and we will see how it goes.

Yesterday, one of the parents I told got pretty teary eyed and another gave me a hug. I also received an email from a physician I know who works at Swedish who found out through the grapevine, had questions, offered help, and upon finding out who my physicians were, told me that he knew them and that I was in “excellent hands.”

Then there’s the constant support of friends and family who have been there for me through this as well as other ups and downs in my life. This last 12 months has been really the most challenging time in my life. (The non-cancer reasons will have to wait for coverage in a separate blog, but I’ll give you a hint. Parenting + teen girl.) Because of this, I do have a concern that comes up from time to time that I am really getting more from family and friends than I am giving back. But it is a manageable concern and I know that it is part of life and how we support one another. It’s not always equal.

So with all of this wonderful life affirming kindness, why the headache this morning? Well it’s not like I don’t see kindness every day because I really do. I think it’s in part because it underscores the gravity of my situation. Another part has to do with being a person who is more comfortable as a caretaker. Although I do like to be taken care of at times, I don’t like it to be my primary role. Finally, as a psychologist, we are trained to be caretakers and there are actual ethnics and laws around keeping our relationships with clients and their families professional. Legally, we are to required to avoid “multiple relationships”. In other words, the only relationship I am to have is to be their psychologist. I can’t be a friend (though I certainly know families with whom I would love to be friends with under different circumstances), I can’t do other business with clients (though I admit I bought Cub Scout popcorn from one of my former clients–he was right in front of the grocery store with a big smile on his face, it was for charity, he’s not roofing my house, I think I’ll be able to keep my license), etc. But because I help kids and their parents with issues close to the heart, the relationships I have, though professional, can also be very close. It’s a unique relationship, it can be an intimate relationship, but one without total reciprocity. The closest analogy is being a parent. As a parent, we have the responsibility to do the lion’s share of giving.

So, although I don’t want you to read this and think that I am fearing that by sharing my cancer status with families that I am being unethical, it is an awkward and uncomfortable experience. And there are a couple of kids who I think may have a particularly hard time with this. One of them I only see every 4-6 weeks, so she may be able to stay out of the loop. But the other kid I see on a weekly basis. I had my monthly consultation group with my psychologist friends/colleagues and I decided to hold off telling him unless I have to and certainly not until I have more information about my treatment plan.

My head is starting to feel a bit better. Thank you, Blog.

So I told Zoey about my cancer last Friday. She had a pretty hard weekend. She was really anxious, moody, and complained of “not feeling well,” especially when we wanted to go some where or do something rather than watch tv. My parents had a dinner party yesterday. She was complaining a little about going. Zoey doesn’t always really “listen” to what I say so even though I told her who was going to the dinner, it didn’t really register that her beloved cousins would not be at the dinner until about 20 minutes before it was time to leave. She was disappointed, but did not balk at going. Then we got into the car and I accidentally slammed her fingers in the car door! She ran out from the car and into the house. Many 13 year-old type declarations were made about how she was declining her invitation to the dinner party. However, we have a policy in these incidences of not allowing her to stay home by herself. She took issue with family policy as only a gifted 13 year-old Zoey can, by running out the door and climbing the Douglas Fir in the back yard. My father-in-law happened to be in the front yard and holding her coat. When he saw her run out the door he said, “Wherever you’re going, you’re going to need this coat.” So she put it on while on her way to the tree.

Our Douglas Fir was planted when the house was built in 1958. It’s TALL. She goes there for fun or when she needs time away. When I was a teen, I did the same thing. I went to nature when I was upset, though we had woods not just one tree. Anyway, I wanted a couple of minutes before walking to the tree and looking up. She had climbed 25-30 feet up that tree. (I was silently relieved that she was able to scale that tree after having accidentally slammed her fingers in my door.) I said, “It’s not too late to change your mind.” Then I went back inside. I came out after another 5 minutes and said, “You are up pretty high. You’re a really good tree climber.” She said, “Is it too late to go?” I replied, “No, come on down.”

We ended up having a really good time at my mom and dad’s. I was proud of Zoey for turning a bad situation around so fast. It’s got to be awfully upsetting to have a mom with cancer when you are trying to be a fearless master of the world.

I told you this tree is tall! Photo by Zoey.

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The purpose of this blog is twofold. First, the obvious reason is that writing about having cancer will be therapeutic for me. Thanks to my mom for the idea. Second, it gives all of you loved ones, whom I invited to this blog, an opportunity to get an update on what is going on and how things are going. I am keeping my last name off of the blog so that it doesn’t come in people’s Google searches for information about my professional services. I’d rather not have one of the first things that people learn about me is that I have breast cancer. I haven’t hidden my health status from people in my practice, the parents anyway, but I would rather explain it to people directly.

Finally, since I am a psychologist in private practice, I know how to communicate with authority, as if I know what I am talking about. And in my job, I have the knowledge to back it up. However, in my blog, I talk about medical issues. So although I am knowledgeable about medical stuff for someone who does not work in medicine, please don’t confuse my know-it-all communication style with actual actual expertise. I am learning as I go along and often go back to correct errors in my posts after I’ve learned more. And then there are the mistakes I make that I don’t catch. Moreover, cancer is not one illness and even for breast cancer, there are multiple different diseases. And even for those of you who might also have, or know someone with ductal carcinoma, every case is different. But the common element among all individuals with cancer is the stress of facing a life threatening illness while still trying to be a full person, not just a cancer patient. So whether you and I are in the same boat or if a loved one is in this boat, I send you my most healing prayers and wishes.

Lindbergh High School Reunion '82, '83, '84, '85

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George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

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