I'm Going to Live Until I Die

I think most people are discounting Valerie Harper, who recently disclosed that she was diagnosed with metastatic lung cancer to the brain in August 2013.  Certainly, cancer in the brain is horrible, horrible news. But I have learned, while living with metastatic cancer myself, that there are many who live for long periods of time after the cancer has spread. Harper's doctors originally only gave her 3 months, but as she has said, ”I’m well past my expiration date already.”

And that is the attitude I do my best to take about my own metastatic cancer. My favorite quote from Harper so far is, "When the smoke clears, I'll be standing, until I'm not."  Valerie Harper has decided to keep living.  Critics respond by saying she is "not being realistic."  And here's what I say to that type of feedback.  You want this cancer?  I'll happily give it to you. Let's see how you "live" your life.  Would you want to be "realistic" and sit on the couch of death until you die? What if you live another 20 years?  Do you really want to have lived your life focusing only on the fact that you're dying?

I occasionally look at websites where other Stage IV patients gather to chat. This can be a dicey experience for the newly-diagnosed. Many of the participants on these lists are experiencing recurrence after recurrence of their cancer, battling the disabling side effects of chemo and the progressing cancer.  The posters to these sites are doing their best to live in hope, and provide a great deal of compassion to each other. One poster on the list, though, particularly caught my attention.

She had been diagnosed with Stage IV breast cancer 10 years prior.   When I saw that number, I thought, "Ten years?  My goodness how wonderful. She's lived 10 years past her diagnosis." But the tone of her web post did not express wonderful.  She talked about how, because she had been newly single at the time of her diagnosis, she had just started dating.  She went on to say that she had not dated since her diagnosis.  Then she continued with a list of all of the other things she had not done in those 10 years, and the physical side effects of her treatment.  Now side effects are a nasty reality of past or current cancer treatment, and they are worth complaining about. But my distinct impression was that this individual had received her diagnosis, and had decided she was dying. So she lived the next 10 years as if she was going to die any day.  She was right. She is going to die. We all will.  But the years she had gotten past her supposed expiration date did not sound pleasant. In fact, they sounded very unpleasant, she sounded very bitter.

I can't control the fact that I have Stage IV metastatic breast cancer. But I can control how I live my life now that it's here. As the poet Ella Wheeler Wilcox once said, "With every rising of the sun, think of your life as just begun." This is one of the good side effects of cancer. The disease has brought my life into a new perspective.  While I have not necessarily changed the way I'm living, I certainly am much more aware of enjoying the way I'm living.  Dinner with a friend.  Seeing a touring Broadway play. Hanging out with my dogs. Sending funny t-shirts to my grand nephew, Klaus (the latest states, "Keep Calm, Dude").  These are the little things that make up a good life.

Another great quote from Valerie Harper, “Don't go to the funeral until the day of the funeral."  I've never really liked funerals myself, so I don't want to be constantly attending my own virtual funeral, whether my life lasts for another 2 years or for 20.  So like Ms. Harper, I will continue to be "unrealistic," and I will be standing, until I am not standing. I am grateful for Valerie Harper's courage in speaking about her cancer, and her courage in continuing to live in spite of the negative opinions of other people.  One website that recently posted an interview with Valerie Harper,  provided readers an opportunity to give feedback, asking "Do you think Valerie Harper is being realistic about her diagnosis?"  My question is why are others so anxious to bury Ms. Harper before she's gone? I'm going to say, keep kicking, Valerie. Because, to paraphrase a quote from the movie Monty Python and the Holy Grail, "You're not dead yet."  And neither am I.

Also published on CureToday

Bringing Up Metastatic Cancer Baby

If only I were a leopard being raised by Cary Grant and Katherine Hepburn. But, nope. I am grown woman with metastatic breast cancer, which is far less glamorous.  Why am I talking about Bringing Up Baby?  Well, my theory is that, just like any being in this world, the metastatic cancer patient has stages of development.

Here's what I've seen so far of my own development:

1) Diagnosis: An extremely terrifying and hectic phase filled with roller coaster conversations with medical staff who inevitably left me hanging over cliffs of terror, often over the weekend.  Shall we compare this to birth? A very, very painful birth.

2) Treatment: This phase is what I like to call Fight, Fight, Fight.  My entire focus was on getting the treatment I needed as quickly as possibly, and then on getting through the horrible side effects of treatment.  Little things like decrease in tumor markers and improving liver readings mattered a great deal, and were holier-than-thou moments at this phase.  This stage might be comparable to those first few years of life, especially the Terrible Two's or a toddler learns the word, "No."

3)  Getting the approval for the double mastectomy: Another iteration of the Fight, Fight, Fight phase, but this time done in a measured and insistently persistent way.  A continuing argument with my oncologist who felt that removing the breast would be just so much fluff and risk, when the cancer had already escaped it's country of origin.  Could this be baby goes to school and pushes the teacher to her limit?  She finally gave.

4) The Mastectomy: How can I describe this? Wound care, agonizing muscle tightness, inability of the surgeon to understand how her placement of a 700 cc silicone breast implant beneath my pectoral muscle might cause pain, and require pain management and physical therapy.  What good is work well done when it makes your life a misery?  Even beautiful furniture can be unbelievably uncomfortable. Coda to Fight, Fight, Fight but with a whole lump of depression thrown in.  I'll compare this stage to Middle School.  Baby goes Emo.

And now where am I? Perhaps the teenage phase. A pissed off teenager. The muscle pain is less, thanks to good physical therapy, and I've got no more fighting to do, at the moment.  So now I'm trying to figure out how to live my life with Stage IV cancer.  Plus, now that I'm done with the fight, I am discovering that I am pissed, I am moody, I am scared, and I am sad. Very, very sad.  Like any good teenager, I am coming awake to how fucking unfair life is, and I am finally feeling the full brunt of all of last year's pain.

The breast cancer was the pièce de résistance of several horrible years.  In 2008, my beloved mother had a hemorrhagic stroke, leaving myself and my siblings to take her off support and help her die. In March 2009 my sister Melissa, during basic surgery, could not be taken off the ventilator, putting her in ICU for a month, and then rehab for another month. In 2010 my friend Joe killed himself. We had such similar lives, I worried that if he couldn't find a reason to live, especially since he seemed to have such a good life, how could I.  I subsequently found out that he had been living with a a very hidden case of major depression.  As a friend put it, he was finally pulled down by living alone with that depression.  In February 2011 my dear sister Melissa finally died of a massive heart attack caused by her compulsive overeating (she was 5'3" tall and was likely close to 400 pounds). And then three months later, one of my best friends died a painful, painful death from cancer, my daily calls to her often met with strained silence as she fought the unbearable pain. The doctors could not give her adequate pain medication because this then sent her heart rate and respiration spiraling down. After they had finally diagnosed the extent of her cancer, they then gave her pain medication, and she died within the hour.

All of this nasty horribleness preceded my January 2012 diagnosis with metastatic breast cancer.  No wonder I'm pissed, scared and sad.  Who wouldn't be? And now that I'm not fighting, and have time to think about the last several years, I've gotten even more angry.  But as they say, it's just a phase.  At some point, I will come through the anger, I hope, and perhaps enter young adulthood. Maybe rent an apartment, buy my first dishes. Who knows.

One thing that has been giving me comfort lately is a performance by the comedian Tig Notaro.  In 2012 she was having an experience similar to mine. She had pneumonia, and the antibiotics to treat this then gave her something called C-Diff, which almost killed her.  A week after she got out of the hospital, her mother died in a similarly tragic way to mine. After all this, her girlfriend broke up with her. Finally, to top it all off, she was diagnosed with breast cancer in both breasts.  Now this is a woman who I can identify with.  Two days after being diagnosed with breast cancer, she performed at the Largo Theater in California, and did an impromptu set that I've downloaded and play every time I start to go too deep into the anger.  You can hear a sample of it at This American Life's What Doesn't Kill You.

Frankly, I don't really get into the what doesn't kill you makes you stronger philosophy. Based on this philosophy, I should be strong enough to bench press Toledo.  But I do believe that what makes you cry can be made better by laughing at it. And that's what this comedy performance does for me, makes me laugh at it.  Because if I didn't have some way of laughing at all this tragedy, and people to laugh with, then I'd be like my friend Joe, alone with my depression. And that didn't work out so great for Joe, you know?

Pennies From Heaven

Yes, I've been in pain lately, although it is much better since starting on a decent muscle relaxant and receiving heavy-duty physical therapy twice a week.  Still, the pain has made me a little bit snarky. Just a little.  Although, snarky is certainly better than massively depressed, which is what I was before I got the decent muscle relaxant.  Yet, I was missing one needed ingredient. Gratitude.

Tonight I was on Facebook, and one of my Facebook friends follows a blog written by a woman dying from metastatic breast cancer.  I say dying because that is what she is doing. In the past two years, she has had six rounds of different chemotherapy drugs and three targeted therapy drugs--my targeted therapy is Herceptin.  My story differs from this woman's in that I have only been on one chemotherapy and one targeted therapy in the last year, and luckily, I have responded very well to Taxol, and the Herceptin is still keeping my cancer at bay.

I am almost hesitant to say this for fear of jinxing my good luck. And that is what it is, luck.  I've mentioned before that this disease splits people into three groups. The first group gets the disease, goes through several treatments, and then eventually dies.  The second group gets the disease, does well for a period of time, and then the disease roars back and has its way, killing the individual.  The third group (the most coveted group of all), gets the disease, responds well to treatment, and stays stable for many, many years.  We all want to be in that third group.  And ending up in groups two or three is a matter of pure luck. Scientists say that Stage IV cancer is individual. How the individual responds depends upon the chemistry of the tumor and the chemistry of the individual who has that tumor.  Scientists have yet to determine what that biology is, so group membership is based entirely on luck.

At this point, it's clear that I am not a member of the first group, making me a very lucky gal indeed. But whether I am a member of group two or three has yet to be determined.  That is a scary, uncertain place.  Reading that dying woman's blog, however, made it clear that I need to be damn grateful.  I have responded, and am still responding, well to treatment.  I am still scared of the disabling and painful nature of this disease.  And at the same time, I did not get metastatic cancer, and then go through chemotherapy after chemotherapy, leaving me laying helpless in bed, and preparing for my soon-to-come death.

Right now I am concentrating on loosening my poor pectoral muscles, and inviting friends to join me in fun and relaxing activities.  I am reading book after book, savoring every word.  I am doing enjoyable work that provides me with a paycheck and decent insurance.  I am still avoiding cleaning my house, a pattern from before cancer, and not feeling a bit of guilt about the layers of dust on my shelves.  I am drinking good coffee, making clever jokes, watching comedies and action flicks, and avoiding any and all conversations about palliative care or end of life--I've had my will and advance directive set up for many years, thank you very much. Right now I am able bodied, relatively physically comfortable, and heading for yet another tattoo (no, this one will not be visible). 

Recently, a local group that raises money for breast cancer research announced a fundraiser.  A photographer's wife had struggled with Stage IV breast cancer, and her husband had documented her journey all the way to her eventual death. The fundraiser will be an exhibit of those photos.  I received the announcement in the mail, with a sample of a few of the photos.  My immediate thought was, oh, Hell no. I do not want to attend an exhibit documenting someone's death.  In whose world would this be of interest? Certainly not mine. 

At some point I will have no choice but to deal with my death, hopefully years and years from now.  But for now, I'll enjoy my good luck.  As I tell people, I don't believe in God, but I sure do believe in knocking on wood.  Somehow knocking on wood comforts me, even if it doesn't actually change things. And pennies.  I pick up any penny I see, just for good luck. The slowly building pile of pennies comforts me as well.  Luck is my friend. We hang.  And I sure as heck appreciate her.  If I have to knock a million times on wood and collect a million pennies, I'll be happy to do it. Meanwhile, I'm going to enjoy my good luck.

Relief

Miss Surly Pants

Finally.  I saw my plastic surgeon last Thursday. Now the woman does beautiful work (as my breast surgeon remarked, as she sent me my plastic surgeon's way, "She makes such beautiful breasts.").  My plastic surgeon certainly does make beautiful breasts, but she doesn't seem to understand pain management.  Rather than trying to downplay my pain, as I tend to do, in this appointment I made it very clear how much pain I was in and how emotionally devastating this pain was to me.

Her response?  "Did you have this type of pain before?"
My response: "No, I can directly relate this pain to the surgery to remove my breasts and then to put new ones in."

I talked about how my muscles were very, very tight at night, waking me up, requiring me to do stretches and massage in order to lessen the pain, so that I could go back to sleep.

After a lengthy discussion, she tells me that she just doesn't know how to help me.  I tell her to give me Flexeril (a muscle relaxer), and that perhaps I need to see a pain management specialist, if this doesn't work.  She adds Motrin to her prescription, telling me to take 800 mg three times a day, along with the Flexeril at night.

That worked. I am able to sleep, only waking up maybe once a night in lesser pain, which I can quickly stretch out and then go back to sleep.  The only drawback is that the Flexeril leaves me tired throughout the next day, but this seems to have lessened as I must be adjusting to the medication.  I am very, very grateful to be in less pain.

And at the same time, I am pissed.  Soon after our appointment, I received an email saying that my medical record had just been updated (George Washington University has electronic records which can be viewed by the patient).  Clicking through to the system, I find the plastic surgeon's medical notes from our visit. The note read something like this, "I am still not convinced that the source of the pain is muscular."

What the fuck? She's not convinced the source of my pain in muscular?  The fact that I have to constantly stretch and massage my muscles for relief is not convincing enough?  Arrogant, arrogant doctor.  The good news is that she will send me on to a pain management specialist after this, so that I do not have to convince this current doctor of the source of my pain.

This constant pain has obviously left me a little surly and is affecting my entire attitude.  I am pissed that I got Stage IV breast cancer right out the door, that I am forced to look at my very possible early and unpleasant death, that in my vanity, I decided to have breast implants, which are creating a discomfort I did not need added to all the other garbage going on with my health.

Okay. I'll stop bitching.  I need a vacation. I need one goddamn good thing to happen to me. Yeah. I know. Being alive a year and a half after experiencing the first symptoms of metastatic breast cancer is a positive thing. Still, what a wonderment it would be to have one nice thing happen to me.  No more deaths of my loved ones.  No more diagnoses of horrible diseases. No more painful and/or debilitating side effects. Throw a gal a bone.  Something. Anything.  I'm not picky.

And somehow, set me free of this pissed off, exhausted place I'm in while you're at it. Being Miss Surly Pants is only making it worse.

For Now

It's been awhile since I've posted. My apologies. Once I was off the heavier pain killers and back at work, typing became painful, so I saved all my typing for work

Here's the latest news. The boobs still hurt. Apparently, my pectoral muscles are not in the mood to give, and seem determined to keep their vise-like grip for as long as possible. Very slowly, and with lots of stretching, it is getting slightly better.  But the painful tightness, along with sharp pangs from scar tissue, will wake me up several times in a night.  I then have to get up to stretch, massage, and  probe the muscles and scar tissue, until I can sleep again. This means that not only can I not get a decent night sleep, leading to constant exhaustion, but I am in chronic pain.  As a psychologist at Sharsheret, who deals with chronically ill patients, told me recently, pain is one of the few things that will break a person down.  I certainly feel broken.

Tomorrow I return to my plastic surgeon to beg for real muscle relaxers (she seems tied to only prescribing diazepam, which is supposed to relax muscles, but simply isn't enough to relax my very tight muscles). The pain goes through my pectoral muscles, around my rib cage, and on to my back, making life very uncomfortable. If my plastic surgeon will not prescribe true muscle relaxers, I will contact my primary care physician. I need this pain to stop and I need sleep. I believe the Geneva Convention prohibits these type of conditions for prisoners of war, and I've got to get out of this concentration camp.

In December, I went through another set of scans, and based on my tumor markers and the scans, my oncologist has declared me stable. There are still two one-centimeter lesions on my liver, but Dr. Kaltman sees no progression, and so has proclaimed me stable, for now. And that is the depressing part of this, the for now. 

I met with a new gynecologist a few weeks ago. After the exam, she and her medical assistant stood side by side across the room from me,and the gynecologist asked me, "So what does your oncologist say is your prognosis?"

"What the fuck?" I thought. "This is Stage IV. What does this doctor think the prognosis is?"

Instead of saying what I was thinking, I simply replied, "My oncologist thinks it will come back." After that, I added, "My new life goal is to die of a massive heart attack, instead of cancer."  This is partly joke, but also frankly true. This is my new life goal. Strangely, the oncologist then went on to say what a benefit cancer provides, giving patients time to prepare for death and say goodbye.  

After a few minutes of her expounding on this subject, I replied, "All philosophy aside, would you, doctor, prefer to die quickly of a heart attack or to die a slow, lingering death from cancer?"  She answered that, in this case, she would probably prefer the heart attack.

I was left thinking that this doctor clearly has no notion of the emotional realities of living with Stage IV cancer, the fears of becoming totally disabled and of dying in pain.  And I began to regret my move to this new gynecologist, simply because I do not need yet another person making stupidly ignorant and painful statements to me about a subject of which they apparently have no empathy or experience.

I do apologize for not being my usual, bright, laughing at pain kind of self.  Sometimes pain is bigger than a person can handle.  As I told a friend who, when I told her my latest, had stated that I had been so strong until now, strength isn't about being feisty and in a stiff upper lip mode all the time. Strength is having the courage to bring your pain to other people, and then to allow those people to help you.  Right now I certainly need emotional support and I need better medications.   I'm praying I have the courage and strength to seek both. Here's to better living through chemistry, because right now, I damn well need it.

War of the Girls

Bertha and Mabel explore their new world

Well, I wouldn't call them girls at this point, more 1950 B movie space ships splashed down on my chest. The epic battle of the pectoral muscle and the silicone beast/breast. These battles can be hard and nasty, breast tissue gone, skin struggling to re-establish blood supply. Sometimes some of the skin loses that battle, as happened on my right breast. A small swatch of skin has gone necrotic and must be removed.

When will this happen, you ask? Wednesday, November 28 at 1 pm at George Washington University Hospital. The procedure will be outpatient and hopefully my sister Meg, who is here to help, and I will be blithely skipping our way back to my house within a few hours.

One million steps forward removing that nasty, cancerous breast tissue, a tiny step back requiring that Mabel, the right breast, be rid of a pesky bit of dead skin.

But, hey, what's a little dead skin when we were talking about getting rid of 800 to 900 cc's of cancer-creating breast tissue. Goodbye death machine, hello my little plastic friends, Bertha and Mabel.

Today's Fighting Thought

This seemed like the perfect image for anyone fighting for their life. Not today, mother fucker!