God and Cancer: The Big Reveal

No, I’m not going to answer all mysteries to the universe. Just want to add to my blog about Will my nurse on Friday. As my friend Polly pointed out, the name Will means protector/warrior, and as she said in this morning’s text, “I felt like he was in a sense a protector of you—physically and emotionally.” I forgot to mention he also had a white board in the infusion room that read in big black letters, “God Is In Control.” He said, “I’m going to tell you some things about the PET scan, but first of all pay attention to this board.”

I pondered that message over the weekend.

I have several (godly) friends who have died (of cancer) in the past year and half a dozen friends who are stage 4. For those who get the bad prognosis, does that mean they’re chopped liver and God could cure them but refuses to because he/she is in control? I don’t know how all of that works.

I never want to presume that God cares for me more than others. If I get well it’s not because God heals me necessarily (and not others) but that my disease is heal-able. In over thirty years of my husband’s practice, I’ve listened to too many stories of suffering/dying babies and or children with cancer who are too young for mom to explain they’re throwing up so much because their chemo is affecting them. Horrible stories.

If you want to read a better discussion of good/evil and free will (and such things as tortured children) read The Brothers Karamazov by Dostoevsky (Book V/chapter 4). Dostoevsky was a Christian btw. One long poem in novel called “The Grand Inquisitor” recited by Ivan to novice monk Alyosha is one of the best known in all of literature because it discusses difficult issues like human nature, free will and uncertainty.

In simplest terms, I prefer to believe that God is with everyone who goes through this plague. Our bodies are frail things subject to physics, disease and aging. Today, my brilliant friend Rob Scott from my church said, “the essence of the good news in not that God is in control but that God is with us.” That would have been a wonderful thing for Will to write on his white board.

That said, I’m greatly relieved that today my husband hassled the PET people til they read the scan (jk), which came back negative. And I must admit, I whispered a prayer of gratitude that I can have more time with my family. Oh sure. I still have the 3rd time recurrence on my skin, but snap! I can handle that. The spread to the bones scared the heck out of me—that’s a terrible way to die. I had nightmares all weekend. Saturday night I woke up screaming, “Help” and Dan touched my shoulder to wake me and said, “Are you having bad dreams?” Last night wasn’t as bad, but I still dreamed I was in a car wreck and all kinds of terrors.

But now, gratefully, I’m ready for my third and last A&C on Friday. The treatment would have changed had I been metastatic. It’s been a Hello-kitty kind of week. Punch biopsy on Monday. Cancer returned. Pet scan Friday and I begin to wonder if my cancer has metastasized. Whew. I feel like my head is spinning. I’m feeling stronger although still a little queasy. Bring on that last chemo and then bring on those 5 weeks of radiation OR a clinical trial at Sarah Cannon. I meet with Denise Yardley on July 24 who is supposed to be a triple negative expert.

This morning my daughter sent me a photo of a mama deer and three babies she had spotted in her wooded yard on her way to St. Louis yesterday. Deer triplets are rare, and she felt this was a maternal message that our family will be okay. I’m a mama of three (although with spouses and grands I guess I’m a big mama to more). Unbeknownst to Elizabeth, I had written a poem about seeing three deer last winter in our backyard. My friend Laura read it to our church on June 30. All of this makes me think, “More things in heaven and earth, Horatio, than dreamt of in your philosophy” (Hamlet).

Brush with the Ineffable During Lent

 Up early, coffee cup in hand, in need of God

as I pondered my new cancer diagnosis

three deer that looked like the Trinity

glided with long legs through my bare-branched yard

with its one hundred weathered steps to the lake.

With grace, the deer lifted their legs to leap the stairway--

a spectacular sight.  Thank you, God, for reminding me

to keep moving despite fear which blocks me.

For native tribes of North America, the deer is a messenger,

an animal of power, a totem representing intuition.

In Buddhism the deer symbolizes harmony, happiness, and peace.

Reflecting on the moment, I lost track of the deer as they wandered off.

“Where are you going?” I asked.  “Please come back. I need you.”

But afterward, I even forgave the dog who wakes me too early in winter.

Might As Well Eat Donuts

I rarely eat sweets unless they’re really great desserts. I haven’t had a whole donut in maybe 30 years. Now I’m rethinking that strategy. In fact I’m wondering if maybe I should take up smoking, sunbathing and couch-sitting since my healthy life-style doesn’t seem to help.

My biopsy on Monday came back positive meaning the cancer is on my skin below my mastectomy scar. Dr. Midis, my hero, did the biopsy in the office (Ouch!) —Elizabeth was with me. He said it was “concerning” so I knew it wasn’t going to be good news. Fortunately I had taken a pain pill before, so it wasn’t too bad. He said we were going to need to bring out the big guns. Baffled, I thought, what are the big guns? I thought the A&C are the big guns.

My husband Dan thinks the cancer floating around is not getting the drug because I had so many vessels cut in my surgery as they moved my back muscle to the front. He thinks my saving grace for this skin/breast cancer is radiation since it’s in my lymphatic system and microscopic.

So I had a pet scan on Friday and had a comedian nurse Will who hooked me up to the IV and prepared me for the radioactive/glucose stuff they gave me. Cancer loves sugar so the glucose causes cancerous areas to light up.

After I registered for facility, Will called my name to come into the Pet Imaging area. He said, “ Deb, we’ve got work to do!”

Then he hugged me. A Big Hug. A big guy. Then he said, “See? Now we’re starting an interracial relationship.. “ I followed him back to examining room and I asked if my friend Polly could come with me and he said yes. I left my purse on the floor and he said, “Don’t leave your purse with a black man. “ Funny guy and I couldn’t quite figure him out. I found out from chatting he was the first African American nurse to be hired in Knoxville. He said he had done his nurses’ training in San Antonio after doing a stint in the military. I must say he was great at sticking my small veins. Got it on the first poke. He continued his shtick the whole time. He said, “ I just love my job. I get to stick white people.” When going down the list of ailments, he said, “Sickle cell anemia?” I looked up and he smiled broadly. I’ve had three pet scans and he told me info about them no other nurse has ever told me—for example, don’t hold a child on your lap for 16 hours because you’re radioactive in abdomen area because you drink water before scan and hold it in your bladder for an hour.

After two hours the scan was completed and they gave me disk so Dan could read at home. He’s not an expert but at least he could see if cancer had metastasized. It will be officially read on Monday. I hope. What Dan saw was the area we expected. Several spots where I had my mastectomy but what surprised him and shocked me was that bone on left hip lit up. Not good but I refuse to believe it’s spread. . I’m on neulasta a drug stimulating bone growth so I’m hoping that’s what it is.

We will know more after the experts read the scan. I went back to my March pet and there was no mention of any area of concern in bones or hip and I’ve had chemo almost constantly since then.

It’s a game changer, and I would be lying if I said I’m not worried. It’s scary to contemplate facing this the rest of my life. But again I refuse to believe it’s spread—it defies logic.

The adventure continues. I’ve been hiding out eating some Godiva chocolate, caprese salad with my new tomatoes, playing (from a safe distance) with my kids and 4 grands (2 of whom flew to town for weekend), and binging on “Stranger Things” and “Dark.” Monday can’t come fast enough.

Ring Around the Rosies: A Plague Song from the Middle Ages

I’m on a post-steroid fueled writing episode. Some good news and bad. Chemo 35 yesterday, and, yes, I am going for the record although Dan knows a patient who got 80 something chemos with his stage 4 pancreatic cancer.

Before chemo infusion, I get blood work done and usually see my oncologist, Dr. Patel. I asked her if my androgen marker came back positive because they are doing clinical trials at MD Anderson with androgen positive tumors. “No,” she said. “You have less than 1% of androgen marker.” I also asked Dr. Patel about the research facility at Sarah Canon in Nashville. Another oncologist, Dr. Hesamm Gharavi, had told me it was the leader of all clinical trials and that I should contact Dr. Denise Yardley, who is a top researcher, to see if I have they have some trial for Triple Negative. Dr Patel reminded me unless I have active cancer they may not put me in a clinical trial because my margins were clear after my mastectomy. Dr. Yardley is supposed to call me back. We also discussed maybe meeting with Provision doc for proton therapy to target a close margin area. Proton therapy is not usually good for breast cancer because it’s hard on the skin and most doctors don’t recommend as part of treatment. But in my case, since I can’t have reconstruction anyway, I will talk to them. At times, people mistakenly say doctors in this area don’t refer to proton therapy because they want to keep their business to themselves. Not true. My husband is credentialed to work there and just wants to do the best for his patients. Plus proton therapy sometimes isn’t paid for by insurance.

By the time I had left Patel’s office, I was feeling pretty positive and proactive.

Chemo was fine despite the red devil infusion. They are giving me a new anti-nausea drug Emend which should help. My daughter Elizabeth came to visit which always delights me. She, like all my children, are the lights of my life. Afterwards Elizabeth, husband Daniel and baby Hugo went out to eat at Pokeworks. My favorite kind of food.

In the late afternoon, Dan and I decided to spend the night at the lake house despite First Friday activities downtown Knoxville. I was having a hard time keeping my eyes open because I hadn’t slept well the night before, so I got to lake house and crashed.

When Dan got home, I was already awake and we went swimming in the our warm pool (86!). I had on a two piece bathing suit and asked him about a red spot below my mastectomy scars. I had noticed it a day or two earlier, but without my glasses I couldn’t tell what it was—a wound from the drains or what. He scrutinized it and said, "S—t. it looks bad. Just like the spots before.” If you know my husband, you know he never reacts strongly to much. When my water broke a month early with my first child, we were at my friends’ house playing cards, and I told him we had to go to the hospital. He backed down their curvy driveway and got stuck. He said, “oh. we’re in a ditch” just like that. We’ve been married for 41 years as of July 1 so I know all his expressions. I texted Dr. Patel and said “Sorry to bother you so late but here is a picture of a spot on my stomach.” She immediately called me back and said she had called Dr. Midis, my surgical oncologist. July 4th week and these amazing doctors are working with me to be seen as soon as possible! Midis said he would work me in on Monday to look at it and to maybe biopsy. I’m nervous. But so grateful again that we went swimming instead of first Friday and I had on a two-piece, which I normally don’t wear, and that the doctors are so quick to get back.

The rest of our Friday night was spent swimming, Skyping with my oldest son and his family, and watching a double feature from redbox, Cold Pursuit and The Aftermath. I may or may not have had a glass or two of wine. But the steroids, slight panic, and a nap enabled me to stay up til 12—unheard of for me. Then when we went to bed I told Dan I needed to read for a while that based on experience I wouldn’t be able to fall asleep for another hour. Dan was such a good sport and stayed up with me even to watch the movies though he had gotten up at 6 to drive to Crossville where Thompson has a cancer facility.

I didn’t take my advice from my last blog—to check out anything that looks weird and didn’t show it to Dr. Patel during our appt. That’s on me. I’ll keep you posted about what happens.

Now I’m beginning to think my cancer is called triple negative because it’s popped up three times. I hope I won’t be singing “ashes, ashes, we all fall down” anytime soon. (By the way my husband does a great job of describing the different kinds of breast cancer on his portion of the blog called “A Second Opinion“).

The Song that Never Ends and True Miracles

On Saturday mornings when I was a girl, with my TV cartoon options exhausted, I reluctantly watched The Shari Lewis Show which included a puppet called Lambchop.  At the end of every episode, Shari and friends would sing, “This is the song that never ends,/it goes on and on, my friends/some started singing it not knowing what it was/and now they go on singing forever just because.”  Repeat. Repeat. 

That’s the way I’m beginning to think of my cancer, which came back near Thanksgiving 2018 (ironic!).

That fall was crazy. But as far as I knew, my cancer was gone since my scans showed no evidence of disease.

In mid-September Hurricane Florence hit Goldsboro, NC, where my parents live.  My sisters and I found out that their 24/7 care had been cancelled because of the risk to the caregivers so my sister Donna and I literally held down the fort for 3 days.  My poor mom was in a great deal of pain and we didn’t know why—we thought it was arthritis.  My dad has dementia and doesn’t remember much of anything.  Possibly because of the wild swings in barometric pressure during the storm, my lymphedema started acting up again.

After the storms subsided, I returned home to prepare for my youngest son’s wedding and guests.

The small wedding was lovely, but on October 8, my husband started having excruciating gut pain, and we ended up in the ER for 8 hours. It turned out to be a gangrenous gall bladder that wreaked all kinds of havoc. He was in the hospital for 6 days.

I knew I was tired, but that was to be expected, right?  Near October 20th, I got a call from my sister who said my mom was in the hospital.  No one was sure why.  Dan was still in bad shape, so I thought I’ll wait a day or two before I go to NC.  But on October 22, my son who had gone to see about my mom, called and said the doctors were waiting for me (the fourth sister) to get there because she was dying. Shock.  An emotional wreck already, I left the next day and found that my sweet mom, surrounded by family, was unconscious and dying.  It turned out she had metastatic cancer.  Although she had been to many doctors, no one picked up on it.  We never found out the origin of her primary tumor. 

A few days later, an ambulance took her to their home, and she died quietly.  I was lucky to be able to hold her hand towards the end.   If you’ve lost a mother, you know there is something very primal about the grief you feel over a mom’s death. While I was dealing with my deep grief, the oncologist’s office called and said “your thyroid levels are way abnormal. They’’re 47 and we are referring you to an endocrinologist. “ I just remember feeling stunned and crying into the phone, “ My mother just died; can this wait til later?”

Life went on as I returned home. But right before Thanksgiving, as I tried on dresses for my niece’s wedding in Raleigh, I saw some small red bumps on my left breast.  I mentioned to my husband and we rushed to cancer center for an ultrasound.  The radiation doc said, “There’s no tumor in the tissue. Maybe it’s a rash.”  I was suspicious.  It didn’t look right to me, so my husband and I immediately rushed up to my oncologist’s office where she examined it. (Remember this is a day or two before Thanksgiving and the staff was trying to get to their holidays so I’m grateful the docs saw me.)

Dr. Patel, my beautiful, funny and brilliant oncologist, who keeps asking me who will play her in the movie version of my life (haha) said, “Maybe it’s a rash. Put this cream on it and see if it improves. If it doesn’t, come back on Monday.” I went to the wedding and didn’t say anything, but the rash got worse.  On Monday, we went to my surgical oncologist who did a punch biopsy immediately. “I’m scared,” I said.  Within 24 hours I found out my cancer had returned. Same tumor, but now on my skin. And to be precise the thing is it had never gone away. No scan except a pet scan or MRI would have picked it up and I had had neither after my all-clear ultrasound and mammogram.   My children all rallied around me as I cried and panicked over the news.  It had only been 6 months since I had stopped my last oral chemo (18 months of chemo, radiation, 2 surgeries and 6 cycles of xeloda.)   I knew we had to act quickly so once again the amazing Doctor Patel got me an appt. at Vanderbilt so they could offer suggestions as to how to treat this aggressive tumor. 

They all decided I should try the new immunotherapy drug Tcentrique which had passed its clinical trial stages and an article had just been published in The New England Journal of Medicine about its effectiveness on triple negative breast cancer.  So now I had a new plan which gave me some relief, and I thought/hoped that this drug would take care of things. I would get 6 cycles of Tcentrique and Abraxane, and we’d scan again. 

So the winter passed. By March, my lesions weren’t looking better so Patel ordered a scan.  It turned out the Tcentrique wasn’t working, so they scheduled a mastectomy.  Near the time of my surgery, they scanned again, and the tumor had grown.

May 10 my left breast was removed, which is no walk in the park, but I was glad to have it over. In about a 6 hour surgery, Dr. Midis, my surgical oncologist, and Dr. Becker, my plastics doc, removed a circumference of about 13 cm. of skin on my chest and moved my back latissimus muscle to the front. I was told later that they debated not doing the muscle/skin move because the wound was so big—they considered closing it with a vacuum seal and letting the edges heal up so the wound would be smaller and I would do the back surgery later.  But eventually they agreed—"let’s not make her go through this again,” and Dr. Becker stretched the skin and sewed me up with meticulous stitches.

 Honestly, when I awoke, I felt like the monster in Frankenstein with all the crisscrossing scars on my front and back.

Some wonder why I didn’t have a bilateral mastectomy or a mastectomy the first time. For several reasons. One is, why remove a healthy breast that has as much chance of breast cancer as any person without cancer? Plus I had a large gene study done, and I have no genetic predispositions for cancer. No mutations whatsoever. 85% of cancers are random, not genetically linked. Moreover my kind of cancer can come back on chest wall even with a breast removed, so even if I had a mastectomy the first time with reconstruction, it would have come back on my skin and all of that would have been wasted.   

Some questions plague me: What if I hadn’t been proactive when my cancer reoccurred?  It was already stage 3, a 9 out of 9 in aggressiveness, larger than before. Also I wonder what the additional, ineffective 17 chemos did to my body.   

For those who say, ”You just need to think positively and pray it will go away” or “God’s got this,” I so appreciate the sentiment, but I WAS thinking positively and never dreamed it would come back.  I was determined THAT was not going to be my story. I have felt the extreme love and prayers pouring out from friends and family and believe that God has been present in that love.    

But for me, the true miracles?  I’m still alive when 50 years ago I would have been dead with this disease.  Plus, the doctors have all acted quickly when they needed to for the most part.  Moreover they were able to excise the cancer and to stretch the skin/back muscle to cover the wound when they thought they couldn’t.  And I’m healing well!  Back to yoga and exercise.

I’m on a new plan as doctors scratch their heads over my disease progression and all of them say, “We’ve never seen a disease act this way so we’re not sure what to do.”  They are giving me additional treatment because they found cancer in my blood vessels so to get the microscopic stuff they must continue to act aggressively. The good news is that the disease is still stage 3, and without treatment, I’m sure it would have spread by now.  My big lessons are cancer is sneaky, and you must be your own advocate because, while the doctors have the treatments and authority, you KNOW your body better than anyone.  Don’t let something suspicious slide.  Get it checked out even if you hate being called a whiner.   (If anything, I was too lax before about the care of my body; I pridefully thought I was in great shape, exercised regularly, I had three kids before age 30, breast-fed all of them, and rarely ate sweets.)  

Here we go again as Dolly sings. After more consultations at Vanderbilt, everyone agreed, I needed 3 more toxic A&C (doxorubicin) chemo’s, maximizing my lifetime limit for the drug, followed by 5 weeks of radiation.  Reconstruction is not possible.

Of course, my case is unusual.  85% of breast cancers are curable and many of them never return especially with the great follow-up drugs for hormone positive and Her2 tumors.  So if this is freaking you out, don’t. It’s probably not going to happen to most who have breast cancer. I just had too many advanced stage markers and this is my song that seems to never end—at least for now.

Everything was Beautiful and Nothing Hurt

The star of Kurt Vonnegut’s Slaughterhouse Five, Billy Pilgrim, thinks the above thoughts when his daughter asks him questions about what it was like to be in the war. The whole book is about the craziness and cruelty of war, and Billy Pilgrim is obviously being ironic. He even thinks about putting that motto on his tombstone. I’ve been thinking about that quote today because I sometimes think that people want to hear such words when you’ve been through cancer. The past few weeks, I’ve also been reading Barbara Ehrenreich , a cell biologist, whom I greatly admire. I often taught her essays to freshmen at UT and thought she was an insightful, talented writer.  Recently a male friend gave me two of Ehrenreich's books—unbeknownst to him that I admired her, and, most importantly, that Ehrenreich has had breast cancer.

The two books are Living With a Wild God about an epiphany that Ehrenreich had as a teen that changed her thinking about the universe, and her new book Natural Causes which argues that we, as modern people, are too obsessed with NOT dying and staying young.  She’s 77 herself and going strong.

Somewhere along the way in my reading, I discovered she was diagnosed with breast cancer in 2000, and she really tired of people saying things like “Cancer is a gift.” If you want to read what she wrote in the Guardian read: “Smile You Have Cancer”:

https://www.theguardian.com/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich

(This link sometimes doesn't work, but you can cut and paste it or type in Ehrenreich and Smile You Have Cancer and The Guardian and the link should come up.)

This essay talks about the dangers of being too optimistic about cancer.  A longer piece about her cancer appeared in Harpers magazine in 2001, and she reprinted it on line. Here’s the link: http://barbaraehrenreich.com/cancerland/. My favorite lines from this piece are the following: “This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more feminine or spiritual — only more deeply angry. What sustained me through the ‘treatments’ is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health insurance operative, strangled with the last pink ribbon.”

I LOVE  cancer "did not make me make me prettier or stronger, more feminine or spiritual."

Now, don’t get me wrong. I like some of the pink ribbon stuff and enjoy my friendships with those who have also had cancer and those who have loved/cared for me during my treatment, but I find Ehrenreich’s perspective refreshing.

One more quote from literature since I’m on a literary kick today.  One of my favorite short stories is “Sonny’s Blues” by James Baldwin.  It’s about a self-righteous older brother, who is also a math teacher.  The brother is trying to help his younger, musician brother get off heroin. Two important messages to me from this story. First, the older brother says to his brother who is despondent: “I wanted to talk about will power, and how life could be well, beautiful.” I believe that--that life can be beautiful despite cancer.

At some point, (paraphrasing) Sonny tells his older brother, "Everyone suffers--they just express it in different ways."  

Second, here are the lines I love, love, love. They're about a) finding either someone to listen to you when you’re down and suffering or b) finding a way to express your suffering in art:

 "It's terrible sometimes, inside," he said, "that's what's the trouble. You walk these streets, black and funky and cold, and there's not really a living ass to talk to, and there's nothing shaking, and there's no way of getting it out- that storm inside. You can't talk it and you can't make love with it, and when you finally try to get with it and play it, you realize nobody's listening. So you've got to listen. You got to find a way to listen."

We've all got to find a way to listen to our suffering. And who says you can’t learn something from TV shows like “The Closer” on Italian TV (I was in Siena last week).  In one episode that I watched, a kid dies unnecessarily and the Chief (I forget her name) asks a priest, “Was there a reason for this?” And the priest says, “That question is too hard for me. I do think it is up to us to make meaning of his death.”  That’s what I believe.  What I do to find meaning is to write through this blog and poetry.  And we have to all tell our own stories. As Baldwin writes: "For, while the tale of how we suffer, and how we are delighted, and how we may triumph is never new, it always must be heard. There isn't any other tale to tell, it's the only light we've got in all this darkness."

 More later (from me) about what doesn’t kill you, can make you (wait for it)…WEAKER.  It’s about sneaky side effects of treatment and cancer.

Mountain Lions, Boiled Eggs, Cottage Cheese and Clinical Trials

Mountain Lion (by Caitlin Feeley I think)

........... In case you've ever wondered.........

What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an ******* for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “**** this mountain, I never wanted to climb it in the first place.

End

Now this is me.  I'm posting "Mountain Lion" because it gives an accurate account metaphorically of how cancer treatment (the bear) is almost as  bad as cancer. In my case, I was asymptomatic with the cancer,  but, boy howdy, did I feel the effects of the treatment. Besides the shingles, I had an infected port, cdiff, a fistula, neuropathy in my feet, anemia, and my thyroid all affected by treatment.  Who knew? Nevertheless, the treatment is necessary--otherwise I'm sure the cancer would have eventually eaten me up since it was growing fast and had already spread to lymph nodes--just a month after having a breast exam with gyn.

Regarding the thyroid: A few weeks ago, my husband suggested that I get my thyroid checked. He casually mentioned that sometimes radiation to the neck harms the thyroid.  Plus he had noticed how I had been wrapping up in layers of blankets when it wasn’t that cold, and I was complaining about my weight gain beginning in March although I wasn’t eating much and I was walking 10,000 plus steps and was working out at the Y with Live Strong. Additionally, when we went to Santa Fe in April, I was walking 14,000 to 16,000 steps a day and was still not losing weight even though I didn't even eat the monks delicious homemade bread. Dan said that the effects of thyroid damage show up about 2-3 months after radiation.  I was right on schedule since my radiation finished in December.

Heeding his advice, about three weeks ago, I had my blood work drawn, and it turned out my thyroid is not functioning properly so my doctor put me on a thyroid drug. 

 I’ve been on it for about three weeks now, and, by eating mostly cottage cheese and boiled eggs, my weight is starting to come off.  That’s not all I eat, but I have never had to diet since I was twenty-something. I was chubby as a teenager and learned to love cottage cheese at that time but for many, many years I thought cottage cheese was diet food for other people. While I’m still not at my usual weight of 122, I’m less than 130 pounds.  I should be grateful that I’m not losing tons of weight—never a good sign for someone with cancer—but my inability to get control of my weight was depressing.   This is a minor thing but it's one more step to feeling more like myself.  

The next step for treatment is a clinical trial with a new drug called keytruda. which is now in clinical trials.  If my name is chosen randomly from a computer database, I'll get an infusion (IV)  of the drug every three weeks for 55 weeks  If my name is not chosen, the clinical trial people will just follow me for 10 years. The drug employs immunotherapy to stop the cancer from coming back. They sent off a sample of my tumor a few weeks ago to test for something called PDL1  or PDL2. These markers indicate whether my tumor is more receptive to the drug.  It doesn't matter which one I have--either will allow me to be in the trial.  However, a week or two ago, the people in control of trial said the tissue sample my team sent off wasn't large enough, so they were going to have to send another sample (stored somewhere). As soon as that sample comes back (marked), they can enter my name in computer selection. Right now I'm in a holding pattern until I see my oncologist next week. Here's info on drug and its efficacy: https://www.google.com/amp/s/breastcancer-news.com/2017/06/09/keytruda-effective-patients-metastatic-triple-negative-breast-cancer/%3famp

I hope I get the drug, but If I don't, it's okay, and I'll look forward to life getting back to normal. Plus the research even without getting drug will help others.

Farewell Captain Janeway and a Poem About Being a "Star"

Here I am creeping back to the computer after being away from my blog for 9 or more months. Honestly, I’ve just been tired—mentally and physically. I finished chemo the end of last July and spent most of my time in August willing my hair to grow.  I don’t remember much about August—a few hikes, meeting with surgeons (plastics and oncology) to determine my treatment. My surgeon at first thought I should have a mastectomy of my left breast because my cancer is arguably one of the most aggressive of the types (triple negative) and my tumor was Stage 3, grade 3C—you can have stages up to 4 and grades 1, 2, 3 and then they are further divided to a,b,c.  Everyone thinks theirs is the most aggressive (understandably) but the stages, type, and grades of tumors tell the facts.  The only good thing on my side was the cancer wasn’t at stage 4 (which means it hadn’t spread to other organs other than lymph nodes).  Dan and I both argued that the cancer could come back on chest wall so why take the whole thing if it wouldn’t guarantee a better success rate? We won in the end; the surgeon was probably convinced because my ultrasound showed “No Evidence of Disease” after chemo although that was a bit misleading as I mention later. You never say “My cancer was cured” although I've mistakenly said it. You can say "there was no evidence of disease (NED)" because you never know!  It’s a sneaky disease and you can’t become complacent, but you can be happy with that result!

My plastics' doc thought I had to have reconstruction with expanders along with surgery because my breasts aren’t that large, and they would take at least 9-10 cm of tissue.  When I talked to my sister Bev, who is a radiation oncology nurse, she said that radiation might be more difficult with expanders. Actually, in her words, “You’ll be in a world of hurt.” While I know that’s not everyone’s experience, I didn’t want additional pain.  Besides I had a history of getting infections, so why risk it?  I ended up opting for the partial mastectomy with no reconstruction.  

My surgery was scheduled for the first week of September. I was pretty freaked out anticipating the pain.  A friend arranged for me to talk to several people who had been through it, but that freaked me out more although they didn’t talk about pain.  One woman had breast cancer several times and that scared me. I didn’t want to hear their advice on what kind of surgery to have since I had already made a type of peace with my decision.  One of the hardest parts of having cancer was having people compare my case to other people they knew.  I’m sure it was well-intentioned, but it was exhausting explaining that maybe my case was different.

What helped me was saying Psalm 23 to myself the weeks before surgery.  “Even though I walk through the valley of the shadow of death, You are with me.”

On the day of the first surgery, my kids, my dear husband, my sister and a few friends, held vigil in the waiting room while my surgeon operated.  After several hours, the surgeon reported back that he had taken out the tumor and 12 lymph nodes and had put in two drains.  He also wanted me to stay in the hospital overnight, in case I developed a clot or my drains didn’t work correctly. I felt okay after surgery when I woke up but I begged for pain medicine. I was so afraid that the pain would come back with a vengeance and I wanted to get ahead of it.

Skip ahead to the next week, and I found out that I needed another surgery because pathology showed cancer beyond the edges where he had cut and had found some cancer in my sentinel node and one other node which they had excised already.   So I had to reschedule another partial mastectomy to get the cancer at the margins. Surgery redux—freaking out again—but this time I didn’t have to get drains.  I think I went home after that surgery.  I can’t remember.  Too many pain meds, I reckon.

Embarrassingly, two weeks later, I also had a fistula repair, caused by the harsh chemo. By the end of September, I was walking pain, hurting on both ends, but got better quickly.  October through December was radiation--32 treatments which were easy compared to everything else although I did get a radiation sunburn. I wrote a poem in December about the experience—it’s not quite finished, but I post at the end.  During radiation, Elizabeth, her husband Daniel, and big brother Henry (age 4) welcomed baby Hugo who was born the end of October.   I took two trips to St. Louis during this time—when the baby was born and at Thanksgiving.  

Also in October, my 88-year-old mother, who was caring for my 89-year-old father with dementia in their home, got deathly ill and was hospitalized.  Thank goodness for sisters who took turns sitting with her in the hospital for weeks and in the rehab facility where she was released before she could go home.  I felt guilty I couldn’t be there, but because of my previous bout with cdiff and shingles, I didn’t need to be in any type of hospital. Stressful regardless; I was feeling helpless.

December we headed to DC for the birth of David and Paige’s baby boy who was born Dec. 20.  While there, David and Paige contracted the terrible GI virus going around--with a 3-day-old newborn!  They were so sick—flat on their backs and out of it. 

Poor Paige was breast feeding, and, somehow, she mustered enough energy to hook up the breast pump because she didn’t want to infect the baby, so she gave him a bottle.  I’ve never seen such determination. 

I was lucky and didn’t get sick, so I sat up most of one night with the new baby, who is darling. Paige’s parents were also there and helped.  Paige’s dad and sister got the GI thing, so I feel blessed that with my low white counts, I escaped the plague.

Late December through the end of April was treatment with a new chemo drug called Xeloda.  The New England Journal of Medicine published an article in the summer of 2017 that this drug works well with triple negative breast cancer to prevent recurrence. It raises three-year-survival rate from 70% to 80%.  It was 8 pills a day for a rotation of two weeks on, one week off.  It was very expensive ($3200 a treatment) but fortunately Medicare covered it.

I tolerated it well, but neuropathy flared up. Shingles came back—did I mention before they were in my perineal area? Talk about painful.  I was also very tired (anemia and low white count) and intolerant of cold. I spent much of the winter evenings wrapped in a blanket watching seven seasons of the sci-fi TV show Voyager, in which the starship Voyager ends up stranded in the Delta Quadrant (Earth is in the Alpha quadrant) and they’re 30 light years from home.  The show is all about their conflicts with other space creatures and cultures in their attempt to get home.

I loved watching it because Kathryn Janeway (Kate Mulgrew)  was always in control and each show had a plot that was resolved by its end. I didn’t need to stress over its characters.

But alas, we finished the last Voyager a few nights ago. I’m not sure what I’ll do to replace it but it sure got me through treatment! 

Overall, I am pleased with my treatment, decisions, and surgeries. My body looks normal (9 months out) and while I might consider reconstruction someday, right now I’m not ready for more surgery.

More tomorrow (I hope) on other observations and side effects of treatment and a funny analogy too good to miss!  Also more on a clinical trial program that I’m enrolled in.  And here’s my radiology poem—Deux Ex Machina means Gods of the Machines. It’s a literary term from ancient Greece when the playwrights would bring in a platform with gods on it to solve a conflict or any loose thread of the play. Also the last line means that those of us who get to be dubious “stars” from photon light, will go on to emit light and love to others. The photo was after my last radiation

Deux Ex Machina

The absolute champions of absorbing light are called black body objects, which is a term applied to anything that absorbs all light. Stars are almost perfect black bodies- they’re one of the closest things to them in nature.  Astrophysical  April 28, 2015

A giant, white robot eye swings down

and hovers over my war-scarred chest,

decorated with sharpie tattoos,

that line up a photon beam as I lie awake

half-naked and nervous on a table in a cavernous room.

I’m alone, my left breast exposed,

while techs aim the invisible beam

from their safe spaces where they watch me--

 the *star* of several cameras—a body absorbing light.

A microphone voice says, ““Hold your breath.”

The machine speaks: Click click click, buzzzzzzzzzzzzz.

and some backstage computer generates graphs

I watch on a video monitor in my room

while my breath-hold protects my heart.

Twenty seconds pass. “Breathe normally.”

Big exhale. Relief.  Repeat 3x. I count.

While beams hum and click, I wait

for the giant eye to close, and my mind drifts

 to stardust, vulnerable hearts

and how we stars might emit stored light.

She might spring a leak! Or ding-dong the cancer's dead!

Finally July 26 arrived--my 16th chemo.  Bev, my sister who is also an oncology nurse, drove me. I brought flowers and chocolates for the nurses and staff who had been so kind and good to me. They all deserve a special spot in heaven. 

My veins continued to be uncooperative but finally Cathy was able to get a line in my left hand. They joked that they had better not give me liquids because I might spring a leak (I had so many sticks).

I wasn't the only patient graduating that day. A young man graduated ahead of me.  The nurses blew bubbles and gave him a big bell to ring.  I was touched when he wished me luck.

Finally the chemo bags were empty, and they put a big pink frame around me. and gave me the bell! My friend Polly Tullock brought awesome chocolate cookies to celebrate.  I cried, Bev cried. We didn't look so pretty, but I was done! 

I never want to do this again, and it's likely that i won't have to because my ultra sound from yesterday (nearly a week later) indicated the cancer is gone. Dr. Roulier looked but couldn't see tumors in my breast or lymph nodes. She said, "You've had a terrific response to the chemo." Whew! But I asked Dan to call her to verify what I heard. He texted back: "No cancer anywhere.." These results are important for another reason besides the obvious (the cancer is gone).. Dan says that if you have a complete response to the chemo, chances are that your cancer won't recur.   I was so relieved. I nearly cried again but I was trying to keep it together.  My dear friend Judith drove me and waited for me forever as they did the ultrasound.  I was shaking a bit from adrenaline when it was over.

On Monday August 7, I meet with the surgeon and he'll tell me about what to expect with surgery. It will probably be a lumpectomy, but I don't know if they will take out lymph nodes too.   We will see. I hope the roughest part of fighting the cancer is over.

Stuck on You

Today was chemo 13 so I guess it had to be a little unlucky, but thank goodness I got treated in the end.  The problem today was that my veins threw down on being stuck and prevented dear chemo nurses from A) drawing blood (to check my white counts)  B) from using the blood stick for the steroids/fluids and chemo bc they burned and blew out.  They finally got the fourth vein to take fluids without burning. My poor veins are a result of the bad vancomyacin drug from hospital, my age, and maybe not enough fluids. I do not fear needles, but I do not like burning fluids coursing through my veins. And the poor nurses had 41 chemo patients today!!!!!!  I tell you they are something else--kind, competent and determined to get you well.  (Too bad the port didn't work out. I only have 3 more sticks!).

If you have to to take chemo intravenously here are some hints:

1) drink lots and lots of fluids a few days before you go.  This seems to be the answer for many things and chemo. It makes sense to flush out toxins and to pump up your veins. I wanted to get fluids intravenously for next Monday but I thought sheesh, another stick. Maybe not worth it.

2) good nurses can take blood from many places. Cathy, an experienced chemo nurse, took blood and I got chemo through a vein in my hand a few weeks ago.

Only three more to go yay. C'mon veins you can do it.!

The Art of Losing

Things I wish I had known before I got cancer:

1)      You can get shingles easily. Get a shingles shot as soon as you find out you have cancer.

2)      You can get cdiff which is a terrible infection and can kill you. You get it when your white blood cells get so compromised.

Okay so do you want to know the gory details? I won’t give you all but I’ll just tell a bit of the story.  Remember the entry about my hospitalization (see entry "How Can You Ruin Oatmeal?") Well, I think some of my later infections came from that ordeal and the crazy infusion of antibiotics to quell the infection from my port bc the gi tract then gets so off balance and susceptible to the bad stuff you come in contact with (like fecal matter from your shoes, from bathrooms, contaminated food) you get very sick.   And the thing that really pisses me off? NO ONE warned me that this was a possibility.  I would have been more hyper-vigilant had I known.

So here’s how it all evolved. My husband and I had decided to visit my parents in North Carolina and then head to the beach after returning from Alaska. Dumb, dumb, dumb, but I did not know any better.  I was feeling okay—steroid hangovers, etc. but nothing bad. 

So trip to parents went okay—they are frail--my dad has dementia and my mom is taking care of him although she has serious health issues too.  We didn’t stay long. We ran a few errands for them but we even stayed in a hotel so that we wouldn’t get one another sick.  Oh and we buried a dead cat that had died in their garage. Shew-whee.  So  Thursday  (which was a day after chemo) we headed to the beach. Thurs. night was just fine—weather good, nice restaurant.  Friday another great day—but that night we ate at a Subway and I’m not sure where that’s where I got my cdiff but it was hot and didn’t look super clean but maybe it was just me not being careful about hygiene somewhere.

At any rate, Saturday dawned but I noticed I wasn’t hungry. By the afternoon my stomach was in huge trouble.  I took a bath and settled down in bed. Dan went to pharmacy to get medicines. Montezuma’s revenge, I thought.  We left the hotel the next day, and I still couldn’t eat.

By Monday, I was pretty sick.  I called the doc and they told me to bring in a sample to test for cdiff. What?????  Dan said, “oh you probably don’t have that.” Sadly with a fever of 101 I dragged myself to the hospital and the test came back positive the next day. It’s highly contagious and I worried about my husband getting sick too.  You can die from this—if you can’t get it under control you can lose massive amounts of weight and make others sick. I was so depressed. I felt as if I had lost control of everything about my health. I felt dirty bc cdiff spreads through spores from your body. Ugh. Plus my perineum area was super-inflamed with something that I had never seen.  Lesions. Pain. And at the top of my sacrum the skin had started to bubble up in ulcers that I had never seen.  I couldn’t sit or lie down without being in pain.  I was like something from outer space with scales on my back and deadly spores emanating from my body.  

Fortunately as soon as my dear friend Polly Tullock heard this, she raced over to my house to clean it. I had already changed sheets but was really too weak to be thorough. My friends  I’ve said before have been golden threads through this whole thing.  And two weeks later, Dan’s office sent over a cleaning crew for my house. 

Nevertheless for a week I walked about in excruciating pain.  My oncologist was baffled when I saw her on Wednesday and they decided to delay treatment bc my white blood count was below 1,000. To top it off  my rash wasn’t getting better. Finally I called on Friday saying I was in pain level 8 out of a possible 10. They told me to make an appt. with a gyn to see what he thought. I did.  I don’t even remember that weekend bc I was in so much pain.

My dear doctor, Walton Smith, agreed to see me early Monday.  He looked at it and said "it looks like shingles" and took swabs.  He started treating me for it right away. Nevertheless, he suggested I see a dermatologist but I couldn’t get an appt. with one till July 6, and it was weeks away!

By the time I saw my oncologist the next week she told me the shingles test had come back negative. That freaked me out bc I wondered what am I dealing with? A flesh eating bacteria (oh god, no!) but I kept taking the medicine he prescribed.  They delayed treatment again bc I was in so much pain.

Finally Dr. Smith’s called me the next Tues. and said the shingles test did show positive. It was just slow to develop.  I will never, ever forget that he is my hero and diagnosed the shingles just by looking at it.

Now it’s been a month later since this all started about June 10.  It’s been awful and I’m still taking sitz baths and pain pills for pain but the shingles are slowly getting better. It made me grateful for the times when my body worked/and will work properly.  And again, I’m really pretty angry no one told me of the shingles risk associated with chemotherapy.

My suffering has also made me think about people in other parts of the world who don’t have these amazing doctors and medicines to help them.   I say prayers for women regularly who have to deal with such agony. I don’t know who they are but it’s out there.

I’m back on track with chemotherapy and am on treatment 12. And to top all of this off, I miss-stepped while cleaning our pool and my knee when down hard on the cement. I’m beginning to feel like Job! My knee is maybe a little better almost a week later but with low white blood cells it’s hard to heal quickly. All I keep thinking is I have to get better. Ironically the cancer and the cdiff have been the least of my worries the past few weeks where I’ve felt discouraged, contagious and helpless because no one can really help me with these persistent problems. Sign. My husband has been great though bc many times with my knee and other terrible pain, I didn’t and don't want to move.

And he will watch hours of TV shows like Supernatural with me.  True love. And by the way as of July 1, we have been married 39 years. Truly it’s been for better or worse.

And here’s the Elizabeth Bishop poem I kept thinking about as I have lost my hair, my eyebrows, my eyelashes, my health, and most recently my ability to walk without pain. Ugh.

One Art

The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or

next-to-last, of three loved houses went.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

Elizabeth Bishop, “One Art” from The Complete Poems 1926-1979. Copyright © 1979, 1983 by Alice Helen Methfessel. Reprinted with the permission of Farrar, Straus & Giroux, LLC.

Source: The Complete Poems 1926-1979 (Farrar, Straus and Giroux, 1983)

How Can You Ruin Oatmeal?

Almost two weeks ago after my 7th chemo, I started running a high fever. This was the second time it had happened with this new 12-week regime of weekly taxol and carbonplatin. (I was on my third treatment or the 8 th treatment of the total scheduled 16). The first time it happened, I was on treatment two. And oh no! We were to leave for our Alaska cruise two days later. I started having chills after the infusion, and we took my temperature, which was 103. We called the oncologist, and she said I needed antibiotics, and, fortunately, I had some cipro on hand that I had gotten for the trip. I took the cipro and was fine the next day. We had a fantastic time on the cruise—it was great to get away, see the wonders of nature like glaciers, and to be off chemo for a week.

But I had to return to reality seven days later and chemo (round 8 from total of 16 treatments) came up the Thursday we got back. I felt fine immediately after treatment but lay down to take a nap and woke up unable to get out of bed because I was shaking so much with chills. But I forced myself and found my husband. We took my temperature which by now was over 104 with Tylenol. We called the oncologist and she said to go to the ER. “OH NO,” I thought. “The dreaded ER.” I hadn’t been in a hospital since my youngest son was born nearly 30 years ago. I had only been at the ER for about thirty minutes and they took me back to a room. I was so weak I could barely walk. The physician came back and asked questions about my fever. He quickly deduced it was an infected port since the fever occurred after each infusion. This was a good guess because the area around the port was not red or inflamed and looked deceptively benign. They did blood cultures from the port, a chest x-ray, urinalysis, ekg, and many more tests that I can’t even list here. I was hooked up to liquid a heavy duty antibiotic—vancomycin. My fever kept running high and my blood pressure was low. I sent Dan home at about midnight because they said they would keep me at least overnight and they didn’t have a room ready for me. And in fact, I didn’t get into a room on the oncology floor until 4:30 AM. I had brought a mystery to read so when I was lucid enough I read.

I could go into more detail here, but suffice to say they kept me for 3 more days because my fever was not abating and my blood pressure and breathing were way off. My darling daughter and husband were great to bring me extra pjs and blankets and normal food. And although the surgeon and oncologist debated the cause of the fever, the oncologist concluded it was an infected port and they removed it on Saturday while I lay in my hospital bed. By Sunday, my fever had dropped and I went home Sunday night. But here are some pointers about this experience: -- If you run a fever after chemo have it checked out. This is not normal. They say a temp of over 100.5 needs attention. Even if your port area is not red, it can be infected with seed bacteria. 

Some nurses are better than others in the hospital. I had several very competent, kind nurses but one in particular was awful. I don’t know if she was stressed out or what, but she was clumsy in the way she talked to an already freaked-out me. In the middle of the night on Friday night/Saturday morning she said “If you don’t start breathing, you will go the ICU and then you will be hooked up to all kinds of machines.” The same nurse asked me if I were a code or non-code. Wait? What???? I might die? Also same nurse would not bring me an extra blanket when I was chilled with fever. I had to lie under a thin blanket shaking until my fever went down with Tylenol. My daughter later brought me a comfy blanket at home that didn’t smell like pee (I didn’t know if that smell was coming from me since I had to get up to pee every 15 minutes, hooked to a monitor pole. Ugh. And the strong antibiotics made my pee smell like sulfur. A humiliating experience.) Maybe get someone to stay with you if possible during the night. 

The food tasted awful to me. I don’t know if it was the hospital food for just that I was so sick. I love oatmeal and the dietician had reassured me it was really good there. When the oatmeal arrived, it tasted as if they had left out the salt or something. In fact, almost all the food was bland. The desserts were cool whip mixed with something. Ugh. No nutrition that I could see. I’m not a picky eater either so I suggest you get people to bring you food you like. My peeps brought me Starbucks in the morning because the coffee was always luke-warm.

If your port gets infected and they have to remove it (fairly painless by the way), your doctors and you will then need to decide if they should put in another or just give you chemo IV. I had 8 more treatments so they are still trying to decide. I took the chemo through IV on Wednesday and I was fine.

Wigging out

You Wear It Well or Warrior Moves (originally written in March)

I've christened my wigs: the brunette one is Ava (after Ava Gardner who hails from Grantham my mom's home town). And the blonde one is Marilyn (after Marilyn Monroe natch). 

I like wearing them while it's cold. It's like wearing a hat. But by night, I want to fling them off. I've also been wearing the pretty soft pastel hat my friend Polly Tullock knitted for me. It doesn't have seams, so it's less irritating on a bald head. Not sure how the wigs or hats will feel in the heat of summer.

I might try going bald at some point (but probably not). My funny friends think I should embrace cos play and the bald Borg look.  Indeed, my sister-in-law Anne called buzzing my hair "a warrior move." I like that. I'm a cancer fighter. Tough. 

Worst Day Ever or What I thought was---Hoo boy!

Worst Day Ever: Just Stop Already

April 12, 2017--It’s been several weeks since I last wrote. I’ve had chemo treatments 3 and 4. Lots of visitors coming and going. The third treatment was fairly uneventful and fun since my daughter and 3 -year-old grandson Henry went with me. The nurses all loved Henry who made all kinds of friends. The only downside was an obnoxious old guy getting chemo who wanted to talk to me about abortion issues. I calmly said, “You know, abortion is at an all-time low.”  Brother!

A few days after my third treatment, I noticed I was a little out of breath as I walked, which is unusual for me since I’ve always run. Actually, my husband noticed it and mentioned it to my doc who then asked him if I needed another echocardiogram.  I thought it was unnecessary; I have a strong heart.  I thought maybe it was related to my lowish red blood counts. I remembered from physiology that red blood cells carry the oxygen to your system. After the third treatment, I continued to fee tired and while I was enjoying family visiting, sometimes I felt the strain of having people wanting me to say that I felt good when I didn’t.  People who haven’t been through it have no clue. Even well-meaning people who have had breast cancer or friends who had cancer without the chemo don’t have a clue, and they start telling me about energy work and acupuncture when I’m like, “Seriously? I can barely get out of bed to make it to my doctors’ appointments and you want me to make more appointments? When I feel that good I’ll let you know.”  Maybe there is a better rhetorical way for them to express their desire that I benefit from their knowledge or their friend’s knowledge. Mostly I’m just irritated and want to smack them.

While none of the weeks after chemo was pleasant, this 4th round of A&C hit me hard. On Thursday April 6 I had the usual chemo. I was weepy that morning. Depressed. Tired. My doc did a manual exam in the office and she said that the breast at least felt smaller, which to me translated to maybe the tumor has shrunk. I started to cry because I was tired of being strong. I also was grieving because I kept saying, “What if I had not noticed this swelling?”  She said “Do not think that way. We got it just in time?” She was very kind and sincerely kind words at this point make me cry.  As for my tiredness, my red blood cells showed that I was at 10 and I know that they transfuse at 9. She suggested that I was out of breath because maybe they had gotten down to 9 at some point and rebounded.  My doc said that she was going to try to get me approved for an experimental drug called carbonplatin that has had some success with totally eradicating breast tumors.

With that news I went on down to chemo 4, same drill.  (I think maybe I get steroids and fluids first,  cytoxin  and then the Adriamycin. I may have messed up that order before.)  I took pictures of the procedure—showing the gowns and gloves they have to wear when they give me the red devil—it’s that toxic. Also I found out that you eat a popsicle while getting the red devil because it’s killing off cells in your mouth as are getting the infusion.  The cold of the pop stops the destruction of cells.  After this last treatment before I left the room, the nurses took a festive polaroid of me and Dan brought me a balloon.

I always feel pretty great after steroids and chemo. Depression gone!  Dan and I then headed to a retreat up in Asheville for a local homeless shelter.  I knew it was a risk but it was a get-away in a beautiful setting—Grovepark Inn—and I figured the steroids would semi-protect my crash for a few days.  For the next 3 days I went to events for the weekend, crashing only a few times.  I took my anti-nausea meds which helped.  The only downside was that by 8:30 I was ready to go to bed. I think most people understood and several commented that I looked pale by Saturday.

We got home on Sunday around 1.  I wasn’t able to nap because friends were bringing over a basket of goodies and plus I was a bit energized by the fact that our realtor was hosting an open house at the house we are currently trying to sell.  I started feeling sicker and sicker. Two friends picked me up at 5 to take me to see the writer Anne Lamott, but we were to go to a church beforehand and have drinks and snacks. I was not hungry and wine tastes awful to me, now (bummer, rights? )but I was grateful to be invited. Lamott was fantastic as usual and the venue was crowded, so by 8:30 I was fairly fainting in the pew where I sat. When my friend asked if I wanted to stay to get Lamott’s new book signed, I said, “I’m dying here.”  My friend was very understanding but I got home about 9, sick and exhausted.

Monday, the next day, I had to get my dog from boarding and tried to take it easy.  But that night I had another venue to attend that I couldn’t easily get out of. My husband had kindly agreed to drive and pick me up so I knew that I would be dropped off at 6 and picked up at 8.  Right before I left, the nurse navigator called me to tell me that my doc was trying to get my carbonplatin approved.  I told her about my fatigue and she said, “The first thing we ask is are you getting enough fluids?” (  Yes.  Probably) Then I started telling her about my busy weekend and she said, “You can say no. You need to take care of you.” Intellectually I knew that but again her words almost made me cry.  I promised her after Monday’s venue, I’d rest.  We both concluded there is always a cost to overextending oneself.

Those were prophetic words because by Tuesday, I was so tired I couldn’t walk more than 10 steps without feeling exhausted. I was more nauseated than usual even though I  took extra medicine to quell it. I  wrote my book group and cancelled our meeting for that night—there was no way I could host. I also told my friend Polly I was too tired to do restorative yoga with her. I was also freezing cold although it was 80 degrees outside.  I put on two sweaters and a coat. I dragged myself to Starbucks for a venti latte which helped maybe a little to make me feel better. My husband was working a half day, so he served as my personal slave when  I was too tired to get my purse out of the car and when I was too tired to retrieve my computer from upstairs. I’ve never been been this tired—not even during pregnancy when I was working two jobs. This all scared me. I wondered if I would have to be transfused, if this would go away. Dan kept telling me just to rest so I lay down at about 12 for a nap and cried over my fatigue and frustration.  An hour later, I woke up and was hungry, so after researching foods withiron, I ordered a take-out plate of oysters, which was great although I was still weak and dreaded the small walk from the car to the restaurant!  (Dan was off doing errands.) I spent the afternoon writing three birthday cards which took all of my energy.  I wondered if I would ever be normal again. I continued to feel yucky and took a Finnergan (anti-nausea drug) before bed at 9.

And then miracle of miracles, I felt much better this morning! (Wednesday April 12). I was able to go to Starbucks with no trouble, went for awalk in the park and even went to the dreaded drugstore to pick up things I needed. It had been a difficult lesson but I know now, to listen to my body and just say, “NO!”

More things I’d like to pass on to friends who have cancer or have a loved one with cancer:

1)      Don’t expect me to be perky all the time.  I can see the look of disappointment and bafflement on people’s faces when I tell them I’m tired (although I may look okay).  I want to say, “Expect it. They are pumping all kinds of toxic stuff in my body. What do you expect?”  Then sometimes they want to fix me with their theories of alternative theories, energy work, acupuncture or whatever.  Don’t do that. It’s stressful.  Do you know how many people have suggested these things to me in the last few weeks?  A lot. I’m a smart person. I’ll figure out what I need.

2)      People want to tell me how great their docs are which is fine, but please don’t imply I could do better unless I ask for advice. That’s also stressful.

3)       Back to my surgeon’s earlier excellent advice, don’t compare your experience to mine unless you’ve had the exact same thing and even then be careful if you tend to be cheerfully optimistic. Perhaps don’t even tell me that 4 out of 6 women in your book group have had breast cancer and they’re all fine. It exhausts me to explain that some chemo is different from others, and that I’m freaking tired and/or sick and I’m in the middle of it and it scares me. 

4)      Just let me rest when I need it. And note to self, do not be around people who stress you out. As an introvert crowds wear me out.  Extroverts don’t understand that. 

Random thoughts at 4 am

Weird Associations and Food:

I'm a poet so I have an associative mind, and it sometimes makes weird connections. 

People going through chemo have a few things in common with zombies--our hair falls out, we like hot sauce on everything, we lose our brains, and we move kinda slow. (Thank goodness we don't crave brains. Lays potato chips for me. Sa-a-lt.)

Chemo patients also have a few things in common with pregnant women. Obvious queasiness , tiredness, your nose runs all the time. (Ironically, also my infected breast is swollen. Makes sense--my cancer is in milk ducts). Plus, on the social side, you sometimes have to contend with well-meaning visitors when you're too tired to move. You also crave weird food and then when you eat it, you never want to look at that weird food again. 

And speaking of food, here are things I like to eat. Salty not sweet. 

1)soups peppery or curry-like. And salty. Chicken noodle or rice. I put extra chicken in it to boost protein. I just had some delicious Italian meatball wedding soup in light broth.

2)plain and simple Lays chips. No baked. The thicker textures get to me sometimes.

3)chili if not too sweet.

4)potato soup if not sweet, but any heavy milk textures gag me.

5)salty meats like hot dogs and pastrami.

6)firehouse tuna sub for some reason. 

7)I think that maybe I'd like fried chicken but haven't tried it yet. 

8)Asian noodles okay if not sweet.

9)Eggs if they have pepper. Or hot sauce but sometimes certain hot sauces are too sweet. 

10) Fruits do not appeal to me. But I should be eating them for digestion problems with chemo. Prunes are good and pineapple helps wounds to heal. Again I like salty. Give me Lays potato chips or Doritos over fruit any day!

Drinks:

Lemonade (that's about it in the early treatment with A&C

Ginger and lemon tea

In my later chemo i craved sweet tea. Didn't like the way artificial sweetners tasted.

I do drink coffee but not crazy about it anymore. One day I was in too much pain from shingles to even make it. Now that's feeling sick!

Y

St Patrick's Day

St Patrick's day. I've been craving a Reuben . More salty meat. Maybe I'll celebrate and buy one somewhere. Yesterday lunch was two hot dogs, no bread. Half a bag of chips. Mustard/ketchup. No dinner. They pumped me full of water though so I woke up five pounds heavier.

What is it about blinding headaches the week after chemo? The kind that bring tears to my eyes? No nausea medicine yesterday, so that's not the culprit. Dehydration can't be the problem since I'm full of fluid. They were going to do an MRI yesterday, but it got cancelled bc of insurance problems. Rescheduled for Tuesday.

Dan once told me the story of one of his smart patients who was bravely fighting cancer, but when she found out it had gone to her brain she gave up. She had always taken great pride in her intelligence. Those thoughts plague me, although Dan says the pet scan would have picked up any large tumors.

The headaches are probably drug related interactions since they occur exactly at the sametime 3-4 AM a week after getting the chemo drugs and neulasta (the drug to stimulate white blood cells on bone marrow).

But friends and generous gifts have brought such goodness to
my life. When St. Elizabeth and I visited Tibet, the Tibetansdraped their scarves over our necks. Later they would leave them as totems on hillsides to mark their spiritual journeys. It's all about community and love for neighbor and god.  These objects are sacred garments.

It was always been my practice as a teacher when I felt afraid to wear the clothing my women friends had given me when Dan was in school, and I had 3 little kids. They knew I was struggling. So that's what I am doing when I have difficult days. I feel as if my friends and family are hugging me on the days I wear their clothing.

One cold day, for example, I wore my friend Corinne Leggett's scarf (Corrine has had breast cancer twice and defeated it) and my daughter's sweater. Two strong women.

unsex me

Buzzing my hair. "Unsex me" as Lady Macbeth says. Actually it's kinda fun in a mad max way. At least Kristen Stewart's got nothing on me. I used to buzz cut my boys' hair so I had the clippers. And look at all this hair when it's a fraction of what it was since so much had fallen out!

Hair raising or losing adventures

““She is magnificently ugly — deliciously hideous… She has a low forehead, a dull grey eye, a vast pendulous nose, a huge mouth full of uneven teeth…Now in this vast ugliness resides a most powerful beauty which, in a very few minutes steals forth and charms the mind, so that you end as I ended, in falling in love with her… Yes behold me literally in love with this great horse-faced bluestocking.” Henry James, 1869”

I've always had fairly thick hair although it's fine textured. Sunday, the 16th day after my first treatment, I was shocked when hair began to shower down when I touched it. I started to cry when I told Dan about it although I was expecting it. It's just one more loss and exacerbated my feelings of my lack of control over my body. Cancer will teach me humility. I must admit I have been vain or at lest mostly grateful for my appearance which has sometimes opened doors for me when we moved around when I was a kid and later. One of the true facts of life is that ppl gravitate towards the pretty.

In my head I know it's what's inside that counts and my  hero George Eliot (Middlemarch) was considered one of the ugliest women in England but within 5 minutes of being around her, men and women fell at her feet in adoration bc of her charm. 

Perhaps some of my grief goes back to childhood. I was the oldest girl of four and my poor mother had a time keeping us clean and presentable. She would sometimes fuss bc my newly washed hair would quickly smell sour bc it was so thick. But I was proud of my beautiful hair in second grade especially. But that summer my mom decided to cut all the girls' hair so it would fit in a bathing cap (we were required to wear them!) and she says we hated having that pulled over our head. To escape my mother I ran and hid in the closet. They found me and cut my hair. I cried and cried. Actually my hair looked cute in a pixie cut but it wasn't what I wanted. Subsequently I didn't want to ever cut my daughter's hair which was also probably a mistake bc she would cry when I tried to comb out tangles. And she might have liked short hair.  I guess you can't win--it's hard not to be in reaction mode as a parent. 

I haven't always had long hair, though. During times of life when I felt strong or liberated from something I cut my hair. In my forties, I had much of it cut off maybe because I liked Princess Di's hair. I wanted a change. I also traveling to places like Europe and wanted to look chic. Ten years later when I finished my doctorate (in 2006) before I went to China to teach for four months,  I took a pair of scissors and started cutting it into a bob. My poor stylist said,  "you were 75% of the way there." It looked cute though and was less upkeep. 

But it's been long since then. I'm liking my pixie hair cut, now but not sure what bald will feel like. I don't want to wake up in the middle of the night looking like a ghoul so I'll wear a flannel cap. The director of the cancer center in town is giving me some flannel caps bc her sister makes them. 

The wig lady with whom I meet today to fit my wigs gave me a shopping list of things. I'm supposed to buy some sea breeze at cvs for my bald head and some eyebrow gel to purchase at Sallie's beauty supply (cheaper there). 

I'll keep you posted as to how fitting goes. Afterwards I'm supposed to get a 1.5 hour infusion of liquids.