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The Journey Begins

Thanks for joining me!

‘Tis a fearful thing
to love what death can touch.

A fearful thing
to love, to hope, to dream, to be –

to be,
And oh, to lose.

A thing for fools, this,

And a holy thing,

a holy thing
to love.

For your life has lived in me,
your laugh once lifted me,
your word was gift to me.

To remember this brings painful joy. ‘Tis a human thing, love,
a holy thing, to love
what death has touched. —Yehuda HaLevi (c.1075–1141)

gorge

 

It’s Been A While

I haven’t written for a while, and I think there’s a whole host of reasons for the delay and that will be the focus of today’s post.

I often write when I have shit to sort out, and I think it comes across as melancholy and deep, and people worry about me.  I don’t want people worrying about me.  Being a burden is one of the last things I want. While I am open to being helped and being dependent on others, I hate that this illness is causing other people to be sad.  But I don’t want to stop writing about it. I think the reading and writing is one way to share the reality and my very real lack of anxiety about the end of life.  However, the anxiety about getting through now and the end of life, whenever that should occur, is very, very real.  But more on that later.

So when I am not writing about my journey with cancer, I want people to know I am just living life.  It is a very different life due to treatments and the accompanying side effects of headaches and fatigue.  During the work week, I have about one waking hour where I eat dinner and get stuff ready for the next day before crashing into bed for my needed 8+ hours of sleep and starting it all over again.  But the time at work is the most invigorating that I have.  I love the people I work with. Their minds are sharp and hearts are full.  We solve problems big and small.  Most of all, I get to plan for a future while at work.  We pretend that I am guaranteed to be a part of that future, and I appreciate people playing along with that guarantee. Regardless, the work I do now will be a part of someone’s future, and hopefully for the better.

I am not ready to give up my work, but I also realize I cannot sustain the needed 7:30 – 4:30 (or later) plus a 40-minute commute on each end.  It is this dilemma that has me playing out options like a rubrics cube:  find a place closer to Quincy so the commute is shorter and the possibility of a “lay down” in the middle of the day is an option.  But that brings financial implications, and the idea of having yet a third house where some of my personal crap might be is more than a chemo-brained 51-year-old can imagine.

Part of the puzzle is having the results of my next PET scan which I think should be in the next two weeks.  Knowing how I am responding to the chemo will help know what we can do next with treatments.  There is hope that the mets have shrunk considerably, and we can cut back on the dose of the taxol that is causing the fatigue.  Let’s talk about the fatigue for a moment.  This is something like I have never experienced.  It comes in waves with the first one hitting about 7 hours after I wake up (unfortunately with a 5:30 wake up time, I get hit about 12:30 in the afternoon).  It starts with a chemical taste in the back of my throat along with a headache and muscle aches in my abs and thighs.   My head becomes thick and I lose focus.  If there is a lot of noise or overlapping conversations, I want to scream to everyone to shut up.  There is a medicine I take that will push the wave back out for about two hours, and then it comes back with a vengeance and no relief until I go to sleep.  If you are following the timeline, I really am no good after 2:30 p.m.  I have tried the solutions people have proposed:  eat, drink caffeine…  meditate… I drink tons of water,  but this monster is like a life-sucking force that sated only by the restoration of sleep.  Thankfully, I have new med that helps that sleep come in a timely fashion so the monster’s sibling:  “uncontrollable thoughts that won’t let me sleep” don’t deprive me of that restoration.  Yes, cutting back on the taxol would be a good thing for QOL (that is cancer talk for Quality of Life).

If the mets haven’t shrunk considerably, that also lets me know that work probably won’t be in my future as long as I would like.  Instead, I will need to look at additional medicines and, potentially, not the longevity I would want, which means I might make different choices with my time.

So don’t worry about me. I am fatigued but happy.  Christmas was wonderful, thrilling, and exhausting.  But since then I have had some quiet days to think, walk, and share time with my wonderful husband.   I have called and set up time with a palliative care counselor who can help me think through these big decisions, and I have wonderful friends who help my QOL immensely.  And, look, I had time to write.

 

31 Days

I didn’t cry

The first time I saw the epic 2018 version of A Star is Born

I didn’t cry.

I teared up a little, who wouldn’t

Instead, I saw the movie as one of hope

Risks taken and rewarded

I was the girl who wanted more from this modern world

I had found what I was searching for

I had found my change

We were in the deep end and being far from the shallow was exciting

The adventure was working:  weekends together, work weeks focused on jobs

New people, new climates

The story was one of unbound hope and inevitable loss.  

I was buoyed.  I came home wired, dancing the joy of the life I had seized for myself.

 

But I was thirsty.  It was so strange. I had been in warm climates before, but dehydration was a constant factor.  So I drank everything I could get my hands on. I worried I was diabetic, but recent tests showed I wasn’t.  I didn’t know that for at least six months, probably longer, my bones were slowly being eaten away by cancer releasing calcium into my system causing the symptoms of severe dehydration.  Sure, I hurt everywhere but doesn’t every 51-year-old woman? Then the rib pain… like no pain I had ever experienced. Must be a kidney stone. CT Scan. Liver Cancer. PET scan. Bone Cancer.  Biopsies. Declining Prognosis. So emerged the optimistic pragmatist.

 

31 days later, in the company of a timeless friend, a true soul sister who has had life throw her more shit than one person should ever experience

 

I cried so hard

The second time I saw the epic 2018 version of A Star is Born

I cried with my hands over my eyes, shoulders heaving, through most of the movie.

I was no longer Ally, I was Jackson:  A ticking time bomb. Tired of acting so hardcore.

The deep end no longer held endless possibilities.  

Instead, it felt like the Columbia River I drive by each morning the blue and silver glittering surface hiding the freezing green depths that can drown you.

I wanted back to the shallow end and safe from everything that was tearing my life apart

My husband now the recipient of the ending song:  I’ll Never Love Again

At least we get to say goodbye.

But again, I left inspired.  The message of love so deep between brothers rang hard in my ears.  The legacy that can be left so that the person never really dies was like a banner through my brain.  

 

Two days later I get a card with a Meg Wolitzer quote.  I will confess it created the heaving crying again because, just maybe, I will have left the world with a legacy. It doesn’t need to be millions of people singing my lyrics, but maybe it will be a voice of hope in someone’s brain.  That’s enough.

 

“She took me in and she taught me things, and more than that she gave me permission. I think that’s what the people who change our lives always do.  They give us permission to be the person we secretly really long to be but maybe don’t feel that we’re allowed to be.”  

 

― Meg Wolitzer, The Female Persuasion

 

Thank you, Lara L. for the cards

Thank you Jodi S. for taking the risk on such an emotional movie and being that one of my soul sisters.  Who knew? 

It feels like a non-cancer kind of day (v. 2 to see if comments work)

It feels like a non-cancer kind of day, but I guess just saying it feels like that is proof that my whole life orbits around cancer and feeling good is in juxtaposition of cancer.  But it still felt great.  My “one and done” radiation session worked!  I have a new shoulder that bears weight, lifts my hands to wash my hair, stretches to make the bed…  It has minimal pain.  The point is bigger than the fix, it is the hope; the hope that medicine can fix not only my shoulder but that it can also kill or deeply, deeply hibernate the cells that want to consume me.

After running a few errands, Tim asked if I wanted to check out Badger Ski Hill Lodge.  He had seen the recreation sign last summer, it is about 18 miles out of E. Wenatchee.  Of course, locals are laughing behind their hands.  The drive is beautiful with mountains barely dusted with snow in the distance.  We imagine settlers finding the trees with the accompanying, necessary water to live next to.  What we didn’t imagine was a privately built t-bar lift with a rough-hew log cabana at the top.  Yes, cabana… an open-air pentagon with 5-foot sides with rotting wicker chairs in the middle (and one chair over the “ski hill”).  After rescuing one of the chairs from the hill and walking around in bemusement, we popped over the hill, landed in Orondo, and stopped at my favorite local spot:  Lisa Bee’s.

It was normal.  But it wasn’t.  It was the new normal, and I hate that phrase.  I was barely hungry at my favorite restaurant: I am losing my taste buds already; I came home exhausted.  I laid down and  for the second time in as many days, I am experiencing my previous “chemo nap/sleep” where my body slows down but my brain speeds up.  My brain goes on ADHD overdrive with no coherence and random shooting thoughts.  I practice my meditation that I have successfully used to get through laying perfectly still for the 45 minute MRI two weeks ago and the hour-long adjusting and radiating experience yesterday.  It doesn’t work.  I won’t reach for pills for a nap.  An hour later I get up frustrated.  If I could sleep, I would be able to do more tonight. Without it, I will be tired.  But now I am gritching.

I feel good.  I feel great.  I am grateful.  I am thankful for today: an almost non-cancer kind of day.

Part 2: Day 1 of Chemo

No poetic voice tonight as my shedded body finally lays down in a bed, not attached to an iv for the first time in 9 hours.

The start was fine. Got hooked up and went through the basics and was administered progeta fine. Then we started the Herceptin, which I had every week for a full year and never had a reaction. This time I had shortness of breath, flushing, and bad headache, they have me some benedryl but I must have been too far into the reaction because I felt like ice was flowing through my veins and I was shivering uncontrollably and then started to vomit repeatedly.

While it felt like this went on for hours, it was probably more like 30 minutes. They had to stop the herceptin, stabilize me with more meds and then restart the hereceptin with a very slow drip. I tolerated it better, mostly because I was knocked out.

Then I had wait time, then more premeds and then taxol (the actual chemo drug), a line flush, and then a bone building drug.

We finished around 6:00. Hopefully the next time I have herceptin we have a better plan for delivery (Sissy, you will be there next time I get it, AND. I had shock watch on 5. First time it has failed me)

Herceptin is THE drug to fight the cancer I have so not getting is not an option.

So thank you for the thoughts and prayers. I am pulling the words over me like a huge quilt of kindness as I give my mind and body a much deserved rest.

p.s. Couldn’t start radiation today due to the extended time in chemo so I start that tomorrow.

What do I do?

The universe is trying to find my breaking point.  I think it might be getting close…  I must be living a “Truman Show” kind of life where the audiences see me being thrown obstacles big and small and seeing how I react: my MRI running an hour late and the longest amount of time in the tube I have ever spent (45 minutes).  [Side note: Good call requesting Adele on my scratchy headphones – she has so many songs that she alone can cover the ridiculous amount of time I spend in the machine.] The following morning I head out to my “big news” oncology appointment and give 1.5 hours to go 13 miles from Seattle to Renton.  However, there is an accident that closes I-5, so I exit and take the alternate route. Then a fender bender closes the ramp that I am already committed to trying to get back on the freeway South of the accident. We have all had those moments when each time you check maps, the minutes to your destination increases, not decreases.  I arrive to the oncology appointment breathless and agitated (but Mom Torrens kept me sane by for talking me through the worst moments of the drive.)

Then you get the news where suddenly the traffic problems are no longer even a blip on life’s worries.  The once “somewhat treatable, maybe 10-15 years, triple positive” metastatic breast cancer is now double negative… the final HER2 marker still unknown.  We are no longer talking years… we could be talking months. Everything hangs on the HER2 marker, and regardless the double negative likely wipes away years of my life.  Tim wipes away my tears in the car. The refrain of screaming “Fuck!!!! I don’t choose this!!!” repeats for about two minutes until I remember it will do no good other than letting my husband know how badly I want to fight this and reject it.  Lunch in a local version of hooters where the wait staff wears leather and lace. You can’t make this shit up. I start making the next calls that will start my chemo, my radiation that will only ease pain but nothing will kill what is growing inside of me.  The only thing radiated to oblivion will be the audacious plan I had recklessly hoped for myself: a new job in the sunshine with a progressive school district, a slower pace of life away from the I-5 corridor, three years spent away from my husband during the week but worth it for job satisfaction – besides, we have our whole lives in front of us…..  Until we don’t. What do you do with that? How to put all the plans in reverse? What do you do now? What do I do? What do I do? What do I do? This question plays an endless loop and is answered by making the next appointment, hearing the next news, putting thoughts down on paper, picturing what makes me happy, trying to manipulate the shattered pieces of my life into some semblance of what we might recognize as a life.  I am not being over dramatic, in fact some people think I am not being dramatic enough. But I am. On the inside. “What do I do?” my brain whispers until the myriad of pills that will help me sleep finally, finally stops the whisper. Every morning since the diagnosis, I wake and test my brain. Was it a bad dream? Every morning there is a similar answer, no, not a bad dream and the refrain begins again, “what do I do?” The audience watches in anticipation.

Just the Facts, Ma’am

The news today was not as good as we would have liked. There is a bunch of medical information behind each of these statements, but this is just a “quick” update. Coming soon… A blog where I can share my journey for those who want to hear about it.
1. The cancer is metastatic breast cancer. But while my original breast cancer was a “triple positive” (which is good because you have three ways to shut the cancer down.) it has now morphed into at least a double negative… and I will find out the third strand (HER2) in a couple of days. That double negative reduces the projected lifespan considerably. The number is now “maybe 5” rather than “maybe 10-15”. That was hard to hear, but it is still better than months. And I will be seeking available trials at Cancer Care Alliance to get that number much higher!
2. My significant bone cancer is not in my leg (that is what happens when you talk to your doctor after being on fentanyl for liver biopsy.) Instead, the major points that are impacted are my left shoulder blade, left shoulder joint into the clavicle, the last rib on my left side, and left hip bone/pelvis. The shoulder joint is about 1/3 eaten away by the cancer and that is where they are concerned about the bone snapping spontaneously.
3. No new news on my liver, other than alcohol is pretty much off the table. Don’t want to damage it in any way.
4. Here is the ideal timeline of how treatment would play out:
Oct. 31st : Three appointments in Wenatchee – Oncologist, nurse coordinator and social worker, and radiation-oncologist (these appointments are made)

The following is what I hope will happen…
Week of Oct. 29th: Appointment with Wenatchee orthopedic surgeon who hopefully will say that surgery on shoulder can wait until after chemotherapy
Week of Nov. 2nd: Start radiation on shoulder and rib for palliative care for pain (possibly every week day for 10-15 days)
Week of Nov. 14th: Get Port put in
End of November – End of March: Series of chemo – IV chemo every 3 weeks for 6 sessions. Receive IV Herceptin 1x week for a year or more
End of March – Start daily chemo pill that has minimal side effects
May – surgery on shoulder
By summer be back to my old self: soaking up sunshine, bumming boat rides on the Columbia, playing Caddy for Tim golfing, and an Alaskan Cruise in July!

It’s Back

It’s Back

Is there a protocol of notification?
I know that going left to right you put the salad fork, dinner fork, plate…. what would Ms. Manners say?
Do you call the people you love the most first?
That line of “most” is like putting all the students in 6th grade with ADHD in the front row. Not possible.
Mom first? No, she will need people to talk to.
I hear you calling out – your husband has to be first!
But he is driving home from work. And I need to process and make it more real. Release some of the fear and tears that are wrestling in my eyes and throat making it impossible to breathe.
Love the most. My girls. My girls who I try to protect from my raw fear and emotions because… because why? They are strong. They can take it. They need to know the depth of my love for them. But you can’t call twins simultaneously.
Sarah…. So strong. Her words, “It will be okay, mom” become the echo in my head
Emma… So thoughtful. “What do you need? Do you need us to drive down tonight?”
Then my sister and mom, who will let the family know.
Then Tim… but that will remain off paper. Just between us.

A pause

When do you let people know the cancer is in the liver? Metastatic breast cancer currently has no cure. Friends, current work, past work… Facebook?
Do you wait for the biopsy? Oncology knows it is cancer, the biopsy will tell what kind, what treatment, what chemo… the doctor, “the life expectancy is measured not in decades or months but years.” Years are good. Years allow cures and additional treatments to be found by our brilliant scientists fussing with machines.

As the word gets out, the love that I always knew was there pours in. I find I am an endless vessel filling up with the love and it gives me the strength I need to keep the fear away.

So now you know. It’s back.