A year ago

A year ago I had my mastectomy –it has been a long year, filled with anxiety and procedures and baldness and hospital corridors and scary machines. But it has also been a year of hope and friendship and love and caring. In the summer I had the last (hopefully, praise God) step. My “expanders” were replaced with my new—lifetime warranted—real, (sort-of) boobs. Looking down, I’m thinking there is not much to write about, I have a youthful size B and now all I need to do is shrink the rest of my body to match them!

I made a choice to have the double mastectomy. Statistics and some doctors (not mine) argue against the need, but it was never even a debate for me. The plastic surgeon has given me a new pair that I have to say look better then their predecessors, even with the scar that runs straight across. But it is so not about the way they look! I have read accounts from women mourning the loss of their breasts and I can only assume that they are much younger women and I feel for them and I am grateful that I have not had to deal with that too, but I honestly don’t mourn their loss.

What a gift health is. Lately I have been thinking a lot about The Epic of Gilgamesh. If you have not read it, it is one of the oldest written stories ever found in what was once Mesopotamia. In the story, Gilgamesh (thought to be a Sumerian King over 2000 years ago) is very upset when his friend Enkidu is dying. Enkidu is dying from disease as an old man and complains to Gilgmamesh that he did not get to die with honor on the battlefield as he was supposed to. Gilgamesh decides to ask the Gods why this happens and the story becomes a quest for immortality. It is not the immortality part that I think about. It is the truth of the story—so many people do live wonderful lives that are then capped with a long painful disease.

In my journey through breast cancer I’ve shared waiting rooms with a multitude of old people. I’ve loved seeing the couples who come in together, taking small slow steps, supporting each other. Often I’ve seen an old person supported by a daughter or a son. And sometimes I see them sitting there alone. And I think it is awful that this is so often the way a full life ends. And I feel the sorrow and anger and confusion that Gilgamesh felt. Why is this the plan?

In Christianity, the Bible explains it as the consequences of eating the apple. In science, the explanation has to do with logic: our bodies get old and simply wear out, or are confronted with a myriad of potential diseases. This is what being human is, but somehow it seems backward and sad that a full life filled with happiness, productivity and love must be punctuated with illness and pain and procedures.

Still, it isn’t as grim as all that. These very same couples banter humorously with the doctors and nurses. They hold hands and discuss the possibilities for lunch. They are treated with loving respect. Even those sitting alone fiercely guard their independence with a stoic graciousness that is impossible not to admire. Indomitable spirit—this too is being human. Marianne Williams suggests that we are not human beings trying to be spiritual, but rather spiritual beings trying to be human. Perhaps that is the best explanation of all.

back to a new normal

Sometimes I catch myself dreaming about when things will get back to normal. I tally the days since my last chemo and revel in the fact that I will no longer have the lead weights that attached themselves to my legs on days 3-11 and that the port and picc have been removed. I sink back into my bed and think; soon I’ll be able to sleep on my side again. All fine fantasies, but the problem is that I cannot let things get completely back to normal, because much of my normal wasn’t healthy. I need a new normal to embrace. And even though I’ve been working on it, I’m not quite there.
Just ask my daughter-- my holistic, organically inclined chef-- who has had a heck of time getting me to eat healthy foods. I could not eat the lentil or squash soup, and the roasted vegetables on crusty wheat bread. I have an annoying tendency to ask “where’s the meat?” Organic butter doesn’t taste right, I only like eggplant fried, “ala” parmesan, and I can no longer bear the smell, let alone taste of ginger which is supposed to be very good for me. What do I want? Campbell’s tomato soup (“But it’s loaded with sodium mom!”)
After she spent three hours cooking my friend’s wonderful risotto recipe, made with all ingredients that I like, for some reason (day 3 post chemo?) when combined, the very smell made me sick.
Can I nominate her for sainthood? The good news is that she sits down and eats and enjoys what she cooks. She is a very healthy eater (which I obviously can take no credit for.)
I have been told that my tastes will change. As I slowly adopt this better diet, I will begin to appreciate these newer tastes—things like whole wheat bread.
There is some improvement. While I still occasionally wrestle with my daughter over the salt shaker, I notice a vast difference in what I used to think was salty and what I think is salty now. (With the possible exception of Campbell’s Tomato Soup)
I recently came home with the news (typical of chemo people) that I am anemic. The nurses suggested steak!
My daughter told me I can get the same benefit from red lentils.
But even so, yesterday she came home with the food of my ultimate craving—an Arby’s roast beef sandwich.
My road to a new normal will obviously have a few twists and back switches.
It was delicious.

It's all in your state of mind

My father-in-law has a favorite expression, “It’s all in your state of mind.” Never was there a more true expression.
The tricky thing is keeping your state of mind in a proper, healthy state of being.
I was doing very well with this until things started going wrong. After the discovery of a blood infection (from the picc or the port) and spending several days in the hospital with two weeks of intravenous antibiotics ahead of me, then the discovery of blood clots in the picc line vein…doubts and fear try to sidle their ugly way into my thoughts. They pop up uninvited and it takes a small battle to banish them each time they appear.

Here are some of the ways I am learning to battle them:

1) With gratitude. I am so grateful for my children and the way they continually rally for me. My daughters sat there in the hospital with me for hours on end with only the view of pale green walls and hospital sounds as background. . My son and daughter-in-law came to the hospital each night to play a round of Apples to Apples. I am grateful that my sister Boo showed up at 11:00 in the evening, having literally blown in from Raleigh on a bumpy flight. Then she spent the night in the hospital room with me in a varying poses of discomfort on the little chair that supposedly is a bed--once I looked over and she was actually upside down in the chair.

I am grateful for the doctors and nurses and med-techs and housekeeping individuals who had a smile or positive news. And for those who fortunately (unfortunately?) discovered all the bad news and have a plan for my recovery.

I am grateful that I am done with the chemo.

I am grateful to my daughter, the one who gave up her exciting job in Washington D.C. to sit at the kitchen table and listen to me whine and watch me burst into tears every other minute. And who received lessons on how to hook me up to an IV twice a day. She schleps me to the doctor and the hospital and cooks for me and cleans up and mostly just puts up with me, dredging into her seemingly bottomless well of strength for another reasurrring word and hug and attempt to make me smile.

I am grateful for friends who show up at the door, come and sit with me and watch me suddenly burst into tears again and act as if they don’t mind.

I am grateful to feel so loved.

2) With breathing. In and out, sometimes deeply. Sometimes while praying, sometimes while attempting to meditate, sometimes while crying. (I do that a lot lately.)

What do you do? How do you keep your state of mind in a positive place? I’d like to know.

nurses rule

Everyone knows that one of the best ways to pick a doctor is to ask a nurse. Without a nurse’s endorsement the choice is iffy at best. When my son was 10 and facing emergency surgery, I followed one of the nurses out into the hall and nearly pinned her to wall, “who would you have do this?” She told me. Dr. J saved my son’s life, but so did she.

Perhaps it is because I grew up with a mom who was a nurse, but I have always known that it is the nurses you listen to, the nurses you trust, and the nurses you rely on. So when the nurses told me to have a port (a device planted in my chest to act as a super IV) put in, I did. And when a nurse told me she didn’t trust my port, despite what the doctors said, and the hospital tests said, I believed her. Yes, the doctors have the education and the training and the knowledge, but the nurses do too and they are there every single day and see the results of the doctor’s orders. They have invaluable working knowledge and experience, and as far as I’m concerned, the buck stops with them.

I had my port put in on a Friday morning. Another surgery, but minor outpatient stuff. On Monday, we showed up for chemo and the trouble began. In port-lingo they couldn’t get a blood-draw. Sometimes ports don’t draw—maybe 1 in 10—
(Again with the statistics and why am I always on the small end?) Still, they also had trouble putting things in, (the entire point of a port.) The nurses ran what they called “draino” to unplug the port, we waited. They tried different-sized needles and different-sized nurses, and put me in different positions. No luck. Eventually it worked, sort of—stuff could go in, but not come out. Towards the end of the day they sent me to the hospital for a dye-test to see if the port was properly positioned. The test came out positive—perfectly, properly positioned, I was good to go. The next day I showed up, ready to hook up to chemo despite the one-way situation.

Except that one of the nurses said, “I’m not comfortable using that port with this chemo when there is no blood draw.” After more manipulations, more draino and more waiting, the port began to draw blood! We cheered. I was hooked up and immediately the first medication, the anti-nausea drug, began to well up in my chest at the port site. Dang.

Three regular IV’s later, I had my chemo, sort of. The danger of using a regular IV with this nasty chemo drug, nicknamed appropriately, “red devil,” is that if it leaks (a vein blows) the drug ‘burns’ skin tissue. Halfway into the treatment my arm began to burn and sure enough I have a nice 2 inch red spot as a souvenir.

(And isn’t all this more than you ever wanted to hear about chemo? I know it is for me!)

Here’s my point. Throughout all of this it was the nurses who were there with me and it has been the nurses who have followed up with me. When I returned to the surgeon who implanted my defunct port and was quite sure he could get it to work, I was uncharacteristically clear that we would not be using this port for anything. I certainly don’t want the red devil welling up in my chest.

Don’t get me wrong. I love my surgeon (he was highly recommended by a number of nurses) and I don’t blame him for the fact that it doesn’t work (though it would be nice to get a refund.) I just love my nurses more. And that is as it should be. I know my mom would agree.

"argh!"

So, sometimes things don’t go right. Twenty minutes into my second chemo, I felt funny. I sat up straighter, I had a tightening in my stomach that radiated to my back, bringing labor pains back to mind. Suddenly I was hot—but this was a hot flash on steroids, like I was about to possibly self-combust. I buzzed the nurses then told my posse (Linda, my friend of 35 years who had flown in from Ohio, and my daughters), “I feel funny.”
I suddenly felt it was important to report every odd occurrence so that after I passed out they would know.

“Stars, I see stars.”

Then, as the nurses rushed in, “…trouble breathing…”

They stopped the drip, gave me steroids, Benadryl, oxygen; Linda massaged my back. My daughters looked pale and hovered close. The clenching spasms stopped. I could breathe. The stars twinkled on for a while.

I am one in 2% who have an allergic reaction on a second dose of Taxotere. Again with the statistics. Yippee.

So, it is protocol to “challenge” the reaction. After a half hour or so, they started the drip again at a half-rate. Admittedly, I was a bit jittery at this point, but within 20 minutes my back labor was back.

So, the good news was that they took the IV out, and we went home to enjoy chicken chili and the rest of a fun, no-side-effects-bothered weekend. Linda and I got some serious Christmas shopping finished and had a great weekend together.

I found out the bad news on Wednesday. There are several types of chemo drugs. They range from nasty to nastier. I got signed up for the nastier one. The one that eats your skin tissue if a vein blows, so I have to get a port—the one that in just 15% of cases can damage the heart. (I raised my brow at the doctor,
“That’s comforting; you’re talking to a 2%-er.”) …The one that, after my first application, left me with three days of nausea.

The worst part of the news however, was that I had to start all over again. The drugs aren’t substitutable—for the best effect I still need four applications.

You could hear my “argh!” across four states. But it doesn’t take long for the perspective to set in. My hospital roomie, and new friend, has two different courses of chemo and then radiation to do. There are thousands of cancer patients taking chemo weekly, or radiation daily, to stay alive. I can’t whine about this.

What I like to do is think about spring. I usually do this at this time of year anyway. This time my dreams involve gardening and grass and growing my hair back.

Uncle Fester

It started on a Friday. Day 17…lose hair. I didn’t wash my hair for fear of having to deal with it before work that morning. I tried to avoid touching my hair at all, because every time I did, a handful would come out. By Saturday I was leaving a serious trail of DNA everywhere I went. I went to a party that night and told the hostess she would need to vacuum after I left.

And the thing is, I wanted it gone at that point. My hair hurt. It felt like it used to after wearing a high ponytail, then taking it down. When I got home that night I started pulling it out. My dog seemed concerned about the head of hair growing on the coffee table. I had a lot of hair. At one point I took the dogs out and let handfuls of hair blow in the wind; I hope the neighbors weren’t watching. Too bad it wasn’t spring, because the birds could have had a field day making nests with it, and I would have enjoyed seeing little nests built of red hair all around the yard.

Of course it didn’t all come out. I was left with stubble and tufts. The next day I went to tutor and wore my new hair for the first time. I stopped at Starbucks for coffee first, but left my hood on because I felt ridiculously conspicuous. It also hurt. The stubble and tufts dug into my head under the wig and by the end of tutoring I had a horrible headache that had nothing to do with ACT prep.

After tutoring I was supposed to meet my daughter’s downtown for lunch. I couldn’t do it, I cried into the phone in a sudden outburst. As is their way, they surprised me by coming home instead. I was sitting on the couch when they arrived and threw a blanket over my head in a panic. They came in smiling and demanding to see. Of course they laughed.

Then they took me into the bathroom and shaved my head—something daughters shouldn’t have to do for their moms—but really who else would I ask? What a relief it was and putting the wig on no longer hurt.

I have seen people who look good bald. I am not one of them. I stared for a long time trying to think of whom I resembled, besides a turtle…then it hit me. I look like Uncle Fester.

So it is the wig for me. Many people don’t even notice. Many people have complimented it so much I wonder how bad my old hair looked! One little first grader had the best compliment however.
“Nice shower!” she said to me.
“Nice shower? “ I asked.
“Yes, your hair is so shiny and clean.”
“Thank you,” I answered.

"they have dragons"

A woman at work was recently diagnosed with breast cancer. I stepped in to see her, and said “Welcome to my club.” She said she didn’t want to be in my club. I told her I understood that and we hugged.

When you find out that you have breast cancer it is amazing how quickly you learn who else in your world has or has had breast cancer. It’s like a Doppler radar picture rippling out throughout your own 6 degrees of separation. While the numbers are alarming and sobering, they are also comforting. There’s a bunch of survivors out there.

And we help each other. I spent an hour on the phone last night with my roommate from the surgery. We compared notes about numb armpits and spent a lot of time laughing as well. Misery does love company after all.

There seems to be an unwritten, but intrinsically understood rule among cancer survivors: they must share. They must pay the story of their survival forward. Who better to pass on the precious flame that is hope? The American Cancer Society understands this very well. In their Cancer Recovery program they partner new “inductees” with survivors who seem to be trained in the exactly perfect time to call.

Here’s the thing though. Cancer is an equal opportunity employer; it has no problem meeting diversity quotas, but it is also careful to give each of its employees a unique experience. So there are no blanket assurances. You can’t say, “There won’t be any nausea at all!” All you can say is “I didn’t have any nausea!” And even knowing that each body handles these treatments in a different way, it is still reassuring and comforting to hear that this person at least had no trouble.

It’s a little like when Harry Potter was in the Tri-wizard Tournament and warned Cedric that one of the trials was going to be dragons. He couldn’t tell Cedric what to do about the dragon--they each had a different kind-- but just knowing about the dragon certainly helped.