Treading Water

It began to snow on my daily walk this evening, the first swirling flakes of a big storm.  I’ve traveled this route almost daily since early July trying to regain my strength and fitness.  It has not gone particularly well, almost no gains and plenty of days where I’m worse.  Treading water is better than drowning. 

When the days were hot, I walked early in the morning, including the Sunday morning I barely made it home with a TIA.  In frustration after that day I decided to keep going until I finally get off these damn meds or I break, whichever came first.  In practicality I started to carry my phone on the walks in case I needed to call for help.  As the days cooled my drug was changed.  Instead of my heart pounding I was short of breath.  Frustrated with the lack of progress I added some short running strips to the walk to push harder.  It didn’t kill me, so I kept it up.  September 21st my old body came back for a visit, running was easy and I danced to the music as I went.  Physical euphoria carried me further on the route, adding a half mile.  The next day the visitation was over, but I continued with the extended route as if I’d find that feeling if only I kept going.  The leaves began to turn, the air cooled, the sun receded.  I sometimes had to go out in the dark, just me, the cold, the stars, and the singing coyotes over the swamp.  I steadily became more short of breath and often dizzy, losing ground.  Treading water is better than drowning.  I kept going out daily, same route, same sections run between specific mailboxes or telephone poles.  My dose was reduced, but the change was disruptive.  I was often too weak to finish, but I kept going out.  Treading water is better than drowning.  More med adjustments and I could again reliably complete my route, which has become both literally and figuratively my sanity.  Now the leaves are gone, the world brown and gray, walks often done after dark.  I’ve gotten tips from other people taking these drugs on how to work back to some level of fitness, and realistic timelines for doing so.  I’ve been able to increase my running distances a bit.  My body is slowly realizing the benefit of the medication adjustments.  I’ve traded the shiny glory of September 21st for the very slow improvement in my breathing, speech, and a host of other side effects.

Then today the snow came, my final jog along the white expanse of the pond cathartic.  I watched the flakes coat my regular route.  My life for the past six months covered in a blanket of white, a cocoon within which I will continue moving forward where I can and treading water where I cannot.  The oh so beautiful blanket of white over the earth while it regenerates.  

I will not be sorry to kiss 2019 goodbye.

A Taste of Knowledge

Today I am thankful for the scientists, economists, data analysts, and statisticians.  The world in general, and my life in particular, are better for the people that questioned the assumptions and myths, probed the universe, and carefully tabulated all the results.  I thank those who are willing to form a theory, then grind through the data and accept when their original assumptions are not supported.  I thank those willing to subject their results to review from experts in their field before publishing.  From Galileo to Turing these people have often suffered the backlash when their work or their lives have challenged the myths and dogma that empower organized religion.  I thank those who are willing to take a bite from the proverbial apple.

The Hunt

A successful hunt today. I may be cold, tired, hungry, and cranky but I came home with 8 new pairs of pants.

I loathe clothes shopping, doing as much online as I can. But I need to try pants on. By last fall my pants situation was becoming desperate. I still did not get around to shopping before the holidays. I sure as hell was not going to go on Thanksgiving weekend, nor any time before Christmas, nor during the crowded January sales. Where clothes shopping is concerned, I can embroider excuses out of thin air. Then I was sick off and on last winter, spring, and summer. Mind you during this time I was able to work and take care of sheep and dogs, but my intermittent health status provided an excellent excuse.

I tried a run to the mall a couple weeks ago, leaving straight from feeding sheep. I had thrown a clean set of shoes into the van for the occasion. On the first trip into the dressing room I noticed that everything I touched was covered with hair. I decided to bail out of courtesy to others, and of course because I did not want to be there anyway.

Today I made a mission out of pants shopping. I crawled out from under my rock and learned a whole new vocabulary relating to pants. Pants are now “Skinny” or “Super Skinny”. There is also something called “jeggings” which look just like the skinny pants. I hate tight clothing. More’s to the point, WTF do I need skinny jeans at the barn for? Will the sheep be checking out my ass? And how is one supposed to get a pair of long johns on under these skinny pants? Jeans are now often “distressed”. To be clear, the reason I’m retiring my jeans is because they are truly distressed, to the point I need to be careful to wear nice undergarments and shave my legs. Apparently the appropriate place for jeans to be “distressed” is on the front of the thigh. I have news for you, fashionistas, real women have jeans that are distressed between the thighs, something that would be obvious if you were not using models whose thighs have never touched. The few times my jeans have been torn on the front of the thigh have involved blood, and once stitches. If you want your distressed jeans to look authentic, try adding some blood stains.

The office pants were not much better. Again, the styles were mostly “skinny”, which means if you don’t want to wear them like leggings you need to buy a larger size. This larger size leaves gaps around your body, and some have little side pouches on the thighs like old fashioned jodhpurs. Maybe I should just buy tall black boots and walk around the office with a riding crop. Probably would send the wrong message. I’m not overly thrilled with my choices on work pants, but hoping they soften to a better fit with washing.

Three stores and countless sarcastic thoughts later I was standing in my last checkout line when my tired and hungry body decided on a full out hot flash. WTF? It took all my willpower not to just drop the four pairs of Levis and escape to the blissful cold rain outside, heading straight home to eat. I persevered, determined to go home with enough of a haul to keep me out of the store for at least a year.

Cheerleading

Dealing with my required medication has not been all that easy.  Apparently I'm not the poster child for med tolerance.  Since the primary purpose of the current med is to suck the life out of me (I'm in disagreement with the doctors on this), I'm on a relentless mission to counter the side effects.  I don't know how to be anything other than a high energy person and don't plan to learn.  I've been making progress figuring out what helps and what makes it worse.  Not eating helps bring my energy back, but of course that is not sustainable.  So I experiment with what and when I eat, push through exercise, and write in my log every day to track what I've eaten, what I've accomplished, and how I feel. 

I use music to keep me going, always have.  Normally my choices have tended to the unabashedly exuberant:  Rubberband Man; Fat Bottomed Girls; In The Mood.  It took little musical encouragement to bring on all consuming physical and mental joy.  Now I'm often at a different starting point where my old favorites are incongruent to my state of mind.  Rather than draw me in they goad me in a way that hinders my ability to move forward.  I'm more reliant on music than ever.  I've learned to skip past selections that are too great a reach for my current mindset and find quieter rhythms.  Matching the musical attitude more closely to my starting point allows me to follow along, go forward, and maybe work to a place where my old favorites will be welcome.  If not today maybe tomorrow. 

In considering this I go back to a problem many, myself included, have in training dogs.  In offering encouragement we begin to cheerlead.  We offer boundless enthusiasm and energy with no regard to the mental starting point of our partner.  Our efforts are inaccessible to the intended recipient, and indeed are an irritation that hampers their mental reach.  We do this to people too.  We forget to let empathy shape our responses appropriately.

The Delivery

I had a decent day at work today though by the time I got home I was exhausted. I arrived to an intriguing big padded envelope in my mail. What could it be? I didn’t recall ordering anything so the mystery perked me right up!

The fucking chemo fairy brought me an informational “starter kit” for a drug I started last week. I’d of rather received a quarter under my pillow. The full color materials are covered with photos of happy people going fishing or on a picnic, like a bloody beer commercial. Seriously I think I got a pretty good sense of this stuff when I read the instructions online that warned me to “Wear latex or nitrile gloves when handling tablets that have accidentally been crushed or broken.” Are you kidding me? But don’t forget to toss your daily dose down! Maybe the happy brochure is to make up for that little tidbit? (If I put the broken tablet under my pillow do I get that quarter?)

Actually the new drug looks like it will be a keeper despite the failures of their marketing department. Time will tell. Meanwhile I’ll continue to thrive on a steady diet of sarcasm and swearing.

Fuck it

I’d been lucky enough to enjoy good health most of my life. When that changed, I learned a fair bit about my priorities. Limited energy taught me how little I actually care about much of what I’d normally do in a day. I learned to gaze at some chore and say “fuck it”. This is not uttered with frustration or invective, but rather carries all the emotion one might vest in the rhyming “bucket”. A more mannered person might look at some chore to be discarded and say “nope”, but a serene “fuck it” works for me. 

The vast majority of any to do list does not need to be done. Much of what is left does not need to be done as often, or as completely. The necessary and the unnecessary change places with time and circumstance. Tasks swirl about our feet like the ocean foam at the beach, only to be sucked back out to where they make no difference to our life. 

I pulled the dog sled into the kitchen last December to wax the runners. Running low on energy I never got myself back out to run dogs. I finally waxed the runners and put it away in the shed last week, July. My dog sled is quite lovely to look at, and the fairly simple task was still more effort than its importance justified. Fuck it. 

The dogs certainly never complained that I’ve trimmed nails maybe 6 times since December. I’ve learned they wear them down rather well. Fuck it. 

The porch door needs to be re-hung. Dogs blasting through the dog door wore the old hinges out over the years. But we’ve found we can keep the inside door closed instead. Maybe this fall, but meanwhile, fuck it. 

Weeding the garden, fuck it. Picking raspberries to put up, fuck it. Mowing the lawn regularly, taking down the lambing jugs, fixing the shed door, all swept out on the fuck it wave. 

There surely are activities that I wish I had more energy and time to enjoy, but the to do list was jettisoned to make room for taking care of myself. Through this process I learned how many things are not that important to me, including any sense of obligation to the trivia of everyday life.

©Maria Amodei

Oxygen

I see humor in most of life.  It is a very rare day I don’t at least once burble up laughter, often overflowing till my eyes are wet.  I laugh at myself, things I think of while driving, the world, other people’s antics, the dogs, whatever strikes my very healthy funny bone.  I laugh alone, with friends and family, with coworkers, and with people I barely know. 

I share my sense of humor with my mother and brother.  My mother lives with me and many days we both end up laughing so hard our guts hurt at some train of commentary we’ve gotten going.  My brother and I regularly engage in repartee, really whenever we communicate.  He married well, so family meals are spiced with laughter as we all joust with comebacks.

Recently someone asked me if my persistent joking was a way of avoiding aspects of life.  I’d never thought about it.  It is just a part of me, like breathing.  So of course the last couple months I’ve thought about it, and the answer is no.

I am often serious.  Allowing humor to slip into a serious topic makes it no less serious.  Rather as embellishing a bridge with lovely architectural details does not diminish the function of the bridge.  The people who I laugh with most often, those who share my sense of humor, are the people I’m most likely to be serious with. 

My brother, with whom I can barely converse between jokes, was the person who I texted from the emergency room at night; the person I first told it looked like leukemia; the person who answered “Understood” when I texted if the prognosis were not good I was not going to do treatment; the person who accepted the task of informing our parents; the person who drove into Boston the next morning; the person who committed to staying all day with me then bringing me home; the person who signed the paperwork as my health care proxy knowing my preferences.  By morning additional test results dramatically improved my prognosis.  I should lead a normal life with medications.  So interspersed with practical thoughts and planning for my convalescence my brother was the person with whom I shared the gift of laughter.

Humor keeps life in perspective.  I pity those with no humor, and with that I include people whose idea of a joke is an ill-disguised insult.  I pity those who cannot laugh fully as I pity those who cannot appreciate beauty or love.  Laughter is joy.  It is equivalent to gazing at a beautiful sunrise, hugging a loved one, diving into clear water.  Laughter opens the heart, the mind, and the body.  Laughter is oxygen.    

©Maria Amodei

Reset

First, I'm fine.  I'm going to live just as long as I was ever going to live, no doubt slated to die getting flattened by some brutish ewe powered by a pushy young dog.

Let's start with the morals of the story:

1 - Family and friends are the best thing in your life, really the very best.  Remember that and behave accordingly

2 - Got something you really want to do?  Do it, now or as soon as you reasonably can.

3 - Science is accurate and a real asset to mankind and to you personally.  Yes bits of things are off along the way as we work through the scientific method, but overall science has helped us enormously (including vaccines and understanding of anthropogenic climate change).

4 - Not everything is a tick borne disease.  Listen to the doctors.

5 - Keep your sense of humor.  It will be your life jacket and what's the point of living without it.

I have leukemia.  I learned this roughly 24 hours ago.  I'd gone to my doctor yesterday assuming I had a tick borne disease.  Headaches, run down.  They sent me off for blood work.  I was grumpy because I really just wanted doxycycline so I would start feeling good for the Nevermoor trial this weekend.  That evening, after pounding in some new 6 foot ground rods, I got a call from my doctor.  My white count was ridiculously high and I was to go to the emergency room right away.   She had called them to let them know I was coming.  Well I needed to finish taking care of sheep and feeding my dogs.  And I was filthy.  So I wrapped up my chores, took a shower, and headed in around 9.  I talked to a couple friends about taking care of my sheep in case I had to stay.  I was cranky, still stuck in my stubborn head on the tick borne options.  My primary care doctor called two more times after checking and finding I had not arrived at the ER, just to make sure I got in there.

At the emergency room they drew more blood.  Yee hah my white count was even higher! (5-10 is normal, I was in the 160-178 ballpark).  I told the ER doctor I was perhaps simply an over achiever.  They told me the types of cells seen and the white count pointed to leukemia.  I needed to be transferred to a large teaching hospital so lots of tests could be run.  I floated the idea of going home, and driving into Boston the next morning.  No dice.  They were going to stuff me in an ambulance as soon as they found a bed whether I liked it or not.  The ER doc was fun to talk to, grew up on a big dairy farm in VT.  Understood my worries about getting my stock cared for.  I had 30+ ewes and 50+ lambs that needed to be moved the next morning or there would be no food for them.  They are at a remote graze behind net.  The move required knowledge of the land, net, and a dog.  He made a comment that it was tough that this was happening, particularly to someone nice like me.  I was incapable of my usual sarcastic remark, but did say that probably 10 years ago I realized I'd not held back in life.  I've done what I wanted.  Though I did not want to die, I have lived.

Waiting for a bed I began to search for stats and info on leukemia, using the information I'd gotten from my tests.  That was dismal.  Really dismal at my age.  I love data, but this had no chance of inspiring my nerdy delight.  Acute leukemia was what it was looking like, making it unlikely I would survive 5 years.  I texted my brother.  I hated to do that but I needed the contact.  I'm quite sure from then he also got no sleep.  I put him in charge of talking to my parents.  I told him if this were something that did not have a good prognosis I was not going to suffer through treatment.  I've seen the misery of treatment and it's not worth it unless there's a reasonable chance of remission.

I was shipped to Brigham and Women's in Boston, where a myriad of doctors poked, prodded, another round of blood work.  Then an oncologist showed up at my bedside in the ER there.  I almost asked where his black robe and scythe were.  While my virtually non existent sense of propriety was not there to stop me, I did not trust myself to speak beyond answering questions at this point.  Indications so far were still acute leukemia.  They found me a bed on an oncology floor, another blow.

As I was wheeled off to my room that first oncologist intercepted me.  He wanted to get me the news as quickly as possible.  Looking further at my results it was looking like chronic leukemia, a manageable problem.  Hallelujah!  (And when did I ever think I'd be delighted to be diagnosed with chronic leukemia?)

Up in my room, now morning, I heard back from my friend Liz who could drive a long ways to Dunstable, meet with the landowner Tim Joyce (another friend) at the remote graze.  I put them together on a text and knew my ewes and lambs would be taken care of, an enormous relief.  I met my oncologist going forward during rounds.  My sleep deprived brother arrived in Boston after picking up my car from the ER at the local hospital.  He spent the day.  We cannot talk to one another without humor.  I was so thankful both for the laughter and his presence.

I needed a bone marrow biopsy to confirm the findings and determine the correct meds going forward.  Bone marrow biopsies are no picnic, and adding my inflamed bones and the marrow so thick with all these miserable little half baked white blood cells and it was pretty special.  They assured me any necessary repeats would be easier.  They showed me the  bone core and some marrow on the slide, satisfying my geek side.  At first the PA was horrified but no one who keeps livestock would be offended by having a slide of bloody body bits pushed in front of them to see.  Indeed we'd all be fascinated.  Then I turned around and saw the medieval tools they'd used.  An 18 gauge needle is microscopic in comparison.  Damn good thing I did not see the equipment first.

Now to the science.  Using the information from the biopsy they will be able to determine enough genetic information about my leukemia to get the exact correct drug, with a good probability of getting the drug and dosage right on the first go.  I will need follow ups.  As long as I take my pills daily I can live my life with this leukemia.  There is a small chance it will even go away.  Believe in science folks, it works.  A researcher is getting some of the marrow and some of my blood.  He's working on a blood test to do the same as the current bone marrow biopsy.  This will be particularly important in 3rd world countries.

There is a very small chance that the bone marrow will tell a different story and I have acute leukemia.  But the Dr. feels solid in his diagnosis and he certainly has the experience.  Not worth worry.

I'M ALIVE!!!!  And this explains a number of problems I've had over the past months so I'm looking forward to feeling more energetic, less clumsy, generally more like my obnoxious self.

Turn East

As earth spins from day to night

the western sky flares alight.

A funeral pyre for each day past,

for moments lived, but time won’t last.

Turn east into the coming night

where hills reflect the rosy light.

Tomorrow’s promise lies in the black,

and yesterday will not be back.

© 2019 Maria Amodei

Winter Walk

The cold sun drew each line crisply, 

dead grass in waves on the ground,

skeleton forest at the field edge,

the stark patterns of winter.

Day’s blue had leached from the sky,

summer’s color long gone from the earth.

With dusk the lines dissolved.

The world a sea of tiny dots,

while color spread on the western sky still crisp with light.

Perhaps my feet would sink through the grass,

the melting world wash over me,

the ground an illusion, magic.

Yet each step found firm footing,

carried me back, carried me home.

Home, warm and bright, ordinary.

©2019 Maria Amodei