Heart Holes

Do I need to floss my teeth?” “Only the ones you want to keep.”

And so the saying goes. But my body will give out before my teeth do, and no one told me that would happen. I didn’t smoke, I ate my vegetables… well I tried to anyway. I did eat meat from a charcoal grill, but it really doesn’t matter what caused it. The reality is that some cellular matter has gone awry

“Only the ones you want to keep.”

And so the saying goes. But my body will give out before my teeth do, and no one told me that would happen. I didn’t smoke, I ate my vegetables… well I tried to anyway. I did eat meat from a charcoal grill, but it really doesn’t matter what caused it. The reality is that some cellular matter has gone awry, and it, or the treatment will kill me.

Disconcertingly, at my first appointment with my oncologist, Dr. Julia, she said to go to the dentist because rotten teeth during chemo can kill you. Of course every day I learn more things that can kill you when you have cancer, besides the cancer: rotten teeth, a staph infection of your port, a bad reaction to the chemo that’s trying to save you, or a hole opening up in your heart. A literal one.

I don’t have a literal hole in my heart. They checked.

However, I do have figurative hole that no one can see, not even with an echo cardiogram. That machine can’t see me trying to cram, sort and file all my memories into the crowded spaces in my heart, hoping when I die all the beautiful living memories come with me. It can’t measure the hole that widens as I try to remember every second of my twin girls’ lives and realize I am grossly disappointed in my unstable memory.

Why do the mistakes stand out? The moments and decisions I would change are like smelly rotten edges around the hole that I can’t ignore. On the other hand, daily life falls away: the beautiful mornings of driving to school together every day, every year, “look, Mom, a mouse is on our windshield”. Just a few mornings stand out, such as the hitchhiking mouse, but hundreds of other mornings are lost in that hole.

It can’t measure the hole that widens as I try to remember every second of my twin girls’ lives and realize I am grossly disappointed in my unstable memory.

Why do the mistakes stand out? The moments and decisions I would change are like smelly rotten edges around the hole that I can’t ignore. On the other hand, daily life falls away: the beautiful mornings of driving to school together every day, every year, “look, Mom, a mouse is on our windshield”. Just a few mornings stand out, such as the hitchhiking mouse, but hundreds of other mornings are lost in that hole. Will my girls remember how much I loved them, and that I treasured our moments as we lived them?

My friendships – built on laughter and talks and baring of souls. I know the foundation; I feel the glow and love we created, but I can’t remember every beautiful moment of growing that friendship. And I am LUCKY in the friendships I have. So supportive. So honest. So hard to remember the moments. Will each precious friend have a memory that reminds them of my love?

My sister and brother; my mom, grandma, and grandpa… my life is stacked like old magazines where I recognize the covers, but not the articles in between. Did I give back as much love as I got? That is my hope and prayer. Will my grandpa’s spirit be waiting for me? To envelope me in the safety and love that he gave me on earth?

And Tim…. He is relatively new to this finite life of mine, so I tend to remember more. I wrote more down. I paid attention. Although chemo brain snips some of those synapses, I will hold his love forever. His love will travel with me wherever I go next. He makes me laugh, every single day. I knew when I met him how precious love and time was and that it shows up in facade too often, and the real deal needs attending to. Will he be able to find me again?

I will have my teeth when I die, and I will have a heart, but when they crack me open, the hole in my heart will be the unmeasurable size of lost memories from loving so many, so hard, and having so many moments during an Amyzing life, both in the past and those moments yet to come.

A really great last summer

I remember when my oncologist first talked to me about the change in my cancer receptors from hormone positive to hormone negative.  We didn’t have the HER2 status yet, and he shared if the HER2 status came back negative, I may have less than a year to live. My first thought, seriously, was “did I just have my last summer?  No, no that is NOT how I would have spent my last summer.”

Last summer was a transition summer to my new path on my journey.  I was committed to wrapping up my Tahoma job and starting my new Quincy job.  I wanted to show Tim my excitement about Wenatchee and Eastern Washington. Family came in and out of my mom’s house, but my focus was diving into my new job.  I had attended two AVID conferences (over 8 days of my summer) and was so excited about what I learned. I felt it was a great jumpstart to my job and the path of professional growth and establishing myself in my new district.  Because that was my new commitment: continuing and building on the good work Quincy had established around success for all and equitable practices. It was a really good path; it was a good transitional summer, but it was not a really great last summer.

Fortunately, I have been blessed with the opportunity to create what I want for my last summers.  The first step to getting full joy of my summers is to quit looking at the path I thought I was going to be on. While I want to keep the friendships and stay connected with QSD’s work, I have to do it from my new path without looking at the previous one with longing.   I see this a lot with people. Sometimes we are prevented from fully embracing our new life because we are so committed to the previous one and what we thought that life was going to bring us. I am refusing to do that this time around. I am working daily to gracefully take the fork in the road while celebrating and exploring what this new trail will bring.

Part of taking steps on my new journey, and having my dream summers, is to create a nest in Crescent Bar where I can host friends and family in the sun and all the fun that the river brings.  This nest also brings me comfort when I am by myself and it will be a perfect pad for continuing my treatments in Wenatchee. Decorating brings me joy and slowly I am personalizing the Crescent Bar condo so it reflects Tim and me.  Okay, it reflects mostly me. But the balcony will be all Tim! Also bringing joy this summer will be a cruise to Alaska with Tim, most of the kids, my sister/her husband, and, if health allows, my mom and grandma.

I am building a summer that does two things: first, sets Tim and me up for more fantastic summers, and, second, should it be my last summer, I can look back and say, damn, that was a really great last summer.  

Another Friday – triple dose style

On Fridays, I seem to wake up with a little more time to reflect.  Chemo starts a little later in the day and I don’t go into work, so I can lay there and take an inventory of my physical and mental self.  First, I start with “Do I have cancer or was this a really bad nightmare?” Check. Cancer it is. On this particular Friday, I wake up feeling pretty good:  physically the ever-present headache has not settled in yet, it typically is triggered by the lights or sounds of the start of the day. My left foot still feels odd with the neuropathy causing the “asleep” feeling in my four toes all the time.  But no muscle pain, no bone pain, no headache. Pretty good, all things considered. Then I realize that, of course, it is day 21. Today is my triple dose day, and the days leading up to the triple dose, I feel the best: so close to normal. So close and then we start the cycle again.

Emotionally, how am I doing?    I probe my brain like a sore tooth. I’ve made some really significant decisions over the last couple of weeks, and, while extremely tender, they feel right.  Hard, but right. I still can’t believe it, but I announced my retirement at work, and I will be done at the end of June. I have struggled to keep up with work; some days I don’t think I can finish the day.  Other days, I get in the zone and can work for hours without thinking of anything else. But in fairness to work, to myself, to my time, to my family, retirement needs to happen. And while I thought the decision would be hard, it wasn’t. It was a no brainer.  Of course, the repercussions of the decision: finances, how to live my best retirement, what it means for where we live, etc. All of those pieces are complicated and lots will need to be sorted out. In fact, I am finding that my health, appointments, insurance, bills, and then figuring out social security, medicare, and retirement… it is a full time job in itself.  

As I get out of bed, the headache now making itself known, I think about how I will prep for the day.  How I need a v-neck so nurses can access my port easily, but with long sleeves to keep me warm during chemo.  The computer needs to be charged because there a few work items that I can get churned out during the down times.  I need my noise-canceling headphones, a charger for my phone, snacks, and water.  It all gets put into my pink “Chemo Shit” bag which I sling over my shoulder and into the waiting car.

My dear neighbor, Kay,  is my ride to the medical center.  Strep throat has grounded my two friends in Maple Valley and they were unable to come over to keep me company during “the triple.”  But I am half way through this 6-month process and I know what to expect. The routine is to check in at infusion reception and get taken back for my blood work to be tested prior to any chemo being ordered.  The nurses get the blood through my port, and then the port is ready to go to receive the pre-medications and chemo in the next couple of hours.  The port is so much more comfortable than accessing veins and pushing poison through them each week.  Since this is my 12th consecutive week of chemo, I chat with each infusion nurse. We know each other well after spending this much time together, and then I go back to the waiting room which has patients waiting for the infusion center, along with patients that are checking in for their colonoscopy.  It is difficult to tell who is grumpier, but my money is on the colonoscopy patients.

My blood work comes back showing that my body can receive chemo – I’m good even though the numbers aren’t perfect: liver (high), platelets (normal), potassium (low), and magnesium (low).  I have a meeting with my oncologist where we go through the same inventory I took in the morning: the status of my physical health and mental health. Fortunately, my oncologist knows me and my case so well that it is easy to go through the symptoms and what we are trying.  She congratulates me on my decision to retire, and smiles her soft smile because at the same time she knows it had to have been a tough decision for me. After the appointment, it is back to the lobby as the oncologist releases the order for my chemo. Finally, I am brought back into the infusion center where my sweet nurses have procured me a private room.  The triple dose day can go as long as 7 hours, and being able to sleep, work, and read without the 30+ other infusion patients and their caregivers is a big blessing. Today we have added an i.v. of magnesium and my bone strengthener, so, with all the pre-medications and the Herceptin, Perjeta and Taxol, I am closing down the hospital tonight.

Sure enough, 12 hours after waking up in the morning and wondering if having cancer was all a bad dream, I am back into bed and pumped full of the chemicals that will kill the fast-growing cancer cells, along with other fast-growing cells I need for digestion, energy, and cognitive processing. I will sleep hard in spite of the i.v. steroids given to prevent any allergic reactions; the stress on my body will pin me to my bed and make me glad I wear a CPAP machine that pushes air in and out of my mouth.  It never hurts to have a little help breathing when you sleep that hard. Another day is done. Another day of battle has been won. Be thankful for that day. I am thankful.  

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.