Thursday, November 29, 2018

Biological Odd Duck

There are cycles to living with metastatic breast cancer, especially for as long as I have.  Of course, first comes fear, sadness, mourning, then gratefulness, appreciation, acceptance, even tedium.  And denial.  Most people feel denial at the beginning, "This can't be happening to me." or  "I'm just eating wrong, I can fix with flax seeds and cannibis." (You can't.).

I recently have been in a State of Denial - my first, after 9 years.

It began when I took a trip to the State of Hawaii with my kids a few months ago. Because nothing interesting ever happens anymore, I no longer blog much.  What am I gonna say?  Discuss chemo, heartburn, fatigue, pain - and do it again?  That's a pretty boring story, even Stephen King couldn't make it interesting.  Now though, I was planning for something new: I was going to blog this trip! as well as give tips! about how to pack medicine!, conserve energy!, as well as normie things like what to bring, and even include photos but....I didn't.  Like Eeyore, I turned out to have "not much energy for a story."

In my adult life, vacations have been few and far between. Either money has been tight, traveling with kids difficult, or both.

Five or so years ago, during my gamma knife radiation treatment, my father died.  It took a while but his house was sold and that money shared between siblings.  My portion was used to pay for my youngest's education. To compensate my oldest we paid off his student loans. I bought an expensive handbag and with the very last bit I figured a family trip was in order.  My dad had taken us on a trip to Mexico and I wanted to share the wealth as he had.

But obviously, I can't go to Mexico, not after my unforgettable fight with cdiff.  No way.
We simplified and went to Hawaii, Maui specifically. Instead of hotels, I found a condo that fit us all with only one couch sleeper.  California to Hawaii is an easy trip, (try to get back east from where I live sometime - once I went to Pittsburgh on business and it took 13 hours and 3 plane changes).  It just seemed doable.

That settled, I planned the vacation around my chemo treatments.  I would have chemo, give myself as much time to recover as possible, leave for Maui and come back right before my next treatment. I hoped this schedule maximized my healthy time.  With the help of my son, reservations were made.  Done!

Years of missing an immune system taught me to pack face masks, spray disinfectant, hospital wipes, and to cross my neuropathic fingers tight (not that I'd feel them), hoping I wouldn't get sick from the germy plane.  Fortunately, I was surrounded by family (I made myself a citizen of the middle seat) and didn't see any creatures or sick people, so with hospital-grade wipes, I obliterated germs from trays and seat backs, listened carefully for somebody coughing or making a sick noise, and hearing nothing, I ignored the uncomfortable, yet adorable Kawaii masks I'd gotten from Japan.

Hawaii is breathtakingly beautiful, as those who have been know. Upon landing, it's like the stage  lights are turned up, the colors more brilliant than a child's happy drawing, and the air is made of La Mers lightest moisturizer.  It was more humid than the last time  I'd been (a decade ago) but the warmth hugged me like fleece.   Or maybe what was hugging me was my hair that frizzed into a shoulder-length ball in mere seconds.  I didn't even need sweaters this time - the only place I was cold was in the condo as my family needed overhead fans and air-conditioning.

While the flight is under 5 hours, by the time we were in the Islands,  I was exhausted, grumpy, achy, hungry, dizzy,  headachy and even sleepy.  All chemo dwarves accounted for.

What is it about planes?  The discomfort of the seats?  The pressurized cabins?  The roar?  The inability to move freely? (Even at 100 lbs its hard, I can't imagine those of you bigger than me managing). The bad TV? The drink cart always blocking the aisle when you need to pee?   It's just so tiring.  Maybe I'm just not a good traveler.   Maybe I should only go first class.  (Donations gladly accepted.)

So, the promised relaxation in paradise was delayed when we got off the plane and took a bus to the rental. When they told all of us in a crowded, small room with benches and screaming kids that it would be another two hour wait in the humidity for our rental car, I didn't think I could manage, so we left. They were on island time, two people working casually to rent cars for a room of 50, but I was still on California time, wanting my car NOW, to go to the condo NOW.  Only two hours into the trip, and I was whining,  "I don't feel good, my back hurts, I'm dizzy....we have to goooo..." We cancelled our cheap reservation and got a more expensive car that was available immediately.

That was an omen for the trip: nothing went as my imagination said it would.  Our happy family gathering at the barbecue to have hamburgers?  Nope.  The family swimming together and splashing in the pool?  Nope.  Walks on the beach, watching the sunset together?  Well, some of us. 

Of course, I point fingers at  me, we always know it's the mom's fault, cancer is only secondary.  There is a difference between feeling okay in your very own living room with your dogs farting at your feet, and in a living room when you travel.   I was nauseated a lot, which was strange considering the distance from my last chemo. I even puked (although to be truthful, I'm a non-drinker and I did have a free Mai Tai which set my stomach off.)  I was unable to eat much - I don't like meat and fish these days and shockingly, fruit plates were hard to find.  I was greatly fatigued, you know - my usual life, set down in paradise.  Our condo was not within walking distance of anything, which was not clear from the rental description.  The grounds were gorgeous, but no restaurants, no bars, and a golf course between it and the ocean that you couldn't cut through. they had to take you in a cart which meant you had to track somebody down.  My daughter-in-law had relatives in Hawaii, and she'd made plans to island hop, which meant my younger son was left with a sick mom and elderly dad while the people more his age were busy.  I couldn't help but feel for him.

That's not to say we had a bad time, I mean,who can complain about Hawaii?  There were moments when I felt good.  We had one long day in Lahaina where we shopped, then took a submarine to view ocean life up close which was lovely.  We went to the Old Lahaina Luau (highly recommended) and had a great time.  We sat in a place for breakfast where we looked right down on the water and saw fish fighting with each other.  We went to craft fairs and swimming and saw some lovely sunsets. I had an incredibly delicate shave ice that is not like other Hawaiian shave ices and I'm sure I'll never have it again.  It was like strings of cotton candy melting in your mouth, only ice.   A few Mai Tais and Pina Coladas were drunk by family (I learned my lesson early).  One night, my husband and son and I walked to the ocean to watch the sunset, and on the way back, struggling in the dark, we saw the milky way.  This, by the way, was on my husband and my 24th anniversary, another reason for the trip.  This California girl who had lived in cities all her life had never seen it.  It was exactly like any picture you've seen, a misty spiral of purple and blue spotted with pinpoint diamonds.  Right there, above me.  There are no words for how magical it was.

But despite many lovely experiences, my illness and fatigue interfered with much of the trip, whether in my own mind or not.  I vowed not to waste money travelling again.

I can feel bad at home.  I can feel guilty at home too.  There is no point in spending thousands to feel bad.

When I got back, I had an appointment with my oncologist.   My doctor had asked me about my trip, and I nearly lost it, tearing up while telling him how poorly I had felt; how I'd literally vomited, that the heartburn and bone pain had been unrelenting even lying in the sun, how very frustrated I was. It's hard to clarify because these are side-effects, not physical cancer, and in a doctor's eyes, I'm doing extremely well. Not that he wasn't sympathetic, he always is.  But compared to what he sees in his milky way of patients I'm still a bright light.

It was time for my yearly PET scan, and as he wrote out the orders he said some fateful words.  He said what he was hearing from me that the treatment was interfering with my quality of life - that there may be other options for me. After the PET we'll look at them. He never said what other options there might be or what he even meant, and although I asked, he did the doctor thing that they all do and said, "Let's see what the test shows first."  If there is one thing I've learned from this life is that doctors do not guess.  They are scientists and they need data. 

He was clear when he said it was okay to skip my next chemo which was in a couple of days.  He could see how upset I was.

I'm not a scientist, quite the opposite in fact, and in the interim, my fantasies took off. I heard that phrase and ran with it. Other Options? My imagination zoomed like a balloon leaking air,  certainly not what he had intended.  So, I skipped that chemo and did my PET. Then I got the results which were clean.  Really clean, as clean as the back of that airplane seat.  This time, it was No Evidence of Disease, no pesky inactive lumps in my lungs or strange twists in my billiary tree, nothing except the ever-present changes in the liver from having it partially removed, and the implants.  There was no evidence that I had cancer. Best scan I'd ever had.

Now, it was time for chemo, but did I go?  Hell no. I "forgot."  Honestly, I know it was some Wednesday coming up but I didn't look it up on my calendar.  I figured if they called me, I'd go.  But they'd called me exactly once in 9 years so it was not exactly a risk.  Besides,  I now decided that I was cured. I believed it, like a 6 year old believes in Santa.  I wasn't going to do treatment anymore.  Somebody has to be cured of this wretched disease, right?  Somebody hears the sleigh bells on the rooftop.  Why not me?  I've done well, been a good girl, went to every treatment, tried to help others who needed it.  I have been putting cancer fighting drugs in my body for 9 years. NINE.  Do you know anybody who has been on chemo for nine years?  Wouldn't you say, "oh my, that's enough!"  And, one of my drugs was new, maybe a miracle cure.  Who's to say that metastatic cancer isn't curable now?  Not everybody who was on the trial for Kadcyla is dead. My body, clearly, wants to keep going.

All in all, I had no treatment of any kind for 3 months.No port flush, no blood tests, no infusions - nothing.  I was done with cancer.

Astonishingly,  my energy began to come back.  I began getting up at 9:00 instead of 11:30.  Heartburn disappeared, constipation, and all the gut/stomach/intestine/bladder problems I haven't described because they are gross -  were gone.  I even became hungry and gained a couple of pounds and am close to my highest ever non-pregnancy weight.  I began cleaning things that hadn't been cleaned in years - I painted baseboards, cleaned the inside of lamps, room corners, got on my hands and knees and scrubbed floors, tile bleached. My house was built in 1947 and definitely shows its age and is hard to clean just because of that,  and the last few years I've mostly just done the basics so that I don't get a phone call from Hoarders - but I got much of it looking decent. I wanted it nice for Thanksgiving - I have really been hoping one of my family members wants to take that day and start a new tradition, but so far, it's me.  As I cleaned, I remembered when I had sepsis and still put Thanksgiving dinner on the table, how Whole Foods meals saved me many a time. Now I could do it without difficulty.  I bought a new couch for people to sit on, and trained the dogs that this one was not their bed. No more Whole Foods -   I even cooked Thanksgiving dinner myself instead of buying it as I had done over the past 6 years. And we had a lovely time.  I even ate, which I had not for many years.

I made plans.  I was going to get the garage cleaned of the junk, turn my sons room into a closet/spare room, or maybe fix the upstairs so when my stepdaughter comes with kids they have lots of room.  I was going to hire contractors to do what I can't, money be damned!  I can now get up and let them in, be dressed, handle the dogs.   Years of neglect due to fatigue - I was going to turn it around - I could turn it around!

I began believing - sincerely - that this had been an ugly decade in my life that was done. I was 50 when diagnosed.   I'm now 60.  I have no idea what a normal 60 year old feels like or if my fatigue is age or treatment.  But it started to think it was merely treatment.   If I went to Hawaii now, I'd be fine, able to enjoy the food, spend time touring.  I started thinking about a make-up vacation for just me and my husband, who has always wanted to see Florida.  I mentally put cancer in the past. I ignored cancer much as I could, and Pink October was invisible to me.

I still have some years left to enjoy - many people at 60 are active and world travelers and starting new things, why not me?  I started planning on getting my body strong - finding yoga classes, eating something aside from sugar. I have grandkids and future grandkids I want to play with and babysit and take places. I hoped that neuopathic and bone and post-surgery pain would disappear after I'd been off chemo for a while.  I figured it had taken me 9 years to get here, so improvement wouldn't be overnight, but I was hopeful with the changes I was already seeing.  Maybe I'd have surgery to fix my mastectomy, which is scarred and uncomfortable.   Maybe I could fix my damaged toe and walk better.  I was thinking of travelling to see my out-of-town relatives and visiting my son at his new job at facebook.  Driving 3-4 hours didn't seem as nauseatingly painful as it had before.  Maybe I could find a part-time job. Maybe I could become organized enough to do something aside from my hair appointment.


Maybe I have options.

I felt healthy.  Normal.  Excited!

It's kind of amazing how quickly you can get over something that has occupied your mind and body for so long, but I did.   It's beautiful to feel this good, like a normal person must.   I truly believed I was cured.  I was flying high as helium balloon.

My next doctor's appointment rolled around. I wondered what the "options" were: would he say that I should go back to herceptin, or just not do anything and see him every few months for monitoring? Maybe have PETs more often?   This wonderful doctor who has been with me so long, whom I trust and respect; he didn't realize I'd misunderstood him, that I'd taken an off-hand comment and turned it into my new life.  He didn't know he had a pin in his pocket and he was about to pop my bubble of denial.

Go off treatment? He said, surprised   It is my body, of course, I can do what I want, he assured me. But he has never in his 26 year career had somebody not relapse with metastatic cancer, even the people on Kadcyla. Options? He meant a new anti-nausea or a daily Nexium.  He has always had a way with words, and he said about my longevity this far, that I am a "biological odd duck" and reminded me I have done so well on all of these treatments, but he doesn't have any patients who do well off of them. He brought his message home when he said that he has people who come to him, begging for something to help them - and there is nothing. He has to tell them no.  I am a success story, a rare one, but that does not mean I am cured, or that he'd recommend I ever go off treatment, or even that it will work forever.

I'm as terminal now as I have always been.  Pop.

Who am I to take what others want so desperately and throw it away?

Here I am, alive to see all those things I'd hoped for when I was diagnosed. My life over the past 9 years flashed before my eyes: my son's high school, then college graduation.  His settling into a job.  My oldest son finding his career, his beautiful wife and their plans for family.   My stepdaughters marriages, and now grandchildren.  And, who knows what more may come?  My husband and I celebrate 25 years of marriage next fall.  All of that I would have missed had I not done chemo. I'd be a faint memory by now, an empty chair at a wedding, a dusty photo on a shelf.

I've been given this gift. This very difficult gift.  It's wrapped in ugly paper with pictures of death, razor blade ribbons, and is so sharp you are covered with papercuts.  Yet inside is my life.   The chemos have worked for me.  I may not be healthy, but I'm functioning.  Do I want to stay alive, albeit in a diminished capacity, or do I want to have a few healthy months and let it go?

My best friend says she'd take the latter.  She'd let herself die.  I don't think she's thought it through, as death from cancer isn't friendly.  She also believes I live through others - the good things in my life truly belong to others, like my children's marriages or graduations.  But that is who I am, a person who cares for those she loves and takes pride in their accomplishments.   I'm not sure what accomplishment means in her mind, but I don't have to understand.  I just know I live in my head more than my body.

In reality, nobody knows what they'd do when actually faced with choosing between life or death, I don't take those opinions under consideration. As I have learned, it's a lot different being faced with an actual problem than imagining it.  There are very few who do not want the precious time they have and give it up readily.  That, of course, is different than accepting your fate when there are no choices.

The things I'm happy for may not be my accomplishments, but I take joy from them anyway, seeing grandchildren, seeing my children succeed. My eldest son lives a mile from me and I want nothing more than to be a grandma a child can actually see and know.   Heck, I want to fix my husbands phone for the 20th time. That is my life, and I want it.

So, I had an emergency chemo session this Monday, and I've had a migraine for two days and already can't eat.  There was no holdover from my days of health.  Now I'm hoping that during my little health fantasy, being off treatment, I have not allowed something ominous to start growing.

To live, I must live on these drugs.  And that simply has to be enough for me.

Frizzy Hawaiian Hair


Two things:  

Remember when I told you about Healthline's Breast Cancer App?  Well, if you haven't downloaded it yet, now is the time.  They are having live chats on a variety of topics, and I'm sure it is helpful and fun for many.  It is available in both the Google Play store and iTunes store, for free.  Get it now and you may see me there.

Also, if you are shopping on Amazon this season, please use this link:  If you click through from here, anything you put in your cart and purchase in that shopping trip gives me a small stipend.  You can cut and paste that link and use it anywhere and it should do the same thing.  It has been very helpful to me to get $20.00 or $30.00 a month to spend but nothing has come through in months. My fault - that's what you get when you don't blog!  I'll try to do better.