Today should be special…

I haven’t written since Sheiky died.  I should have.  I can’t get the picture out of my mind…he came limping back into the exam room, after the vet had inserted a catheter, to make the infusion of the euthanasia drug easier.  Sheiky was holding out that leg.  To me.  Like I could fix it.  And instead, I gave the nod to kill him.

Yes, I know the lymphoma killed him.  But I gave my assent.

I tried for a few days, and knew that I could not live without a greyhound companion.  A month after precious Sheiky died, Kissy (NB’s Kisstheroad) came into our life.  She’s wonderful in every way, and I will post her picture and write about her in a day or two.

But today…

…is the 5th anniversary of my stem cell transplant.  Transplantees call it a “re-birthday”.  I have beaten every odd as a transplantee for the particular type of lymphoma I had, yet I can’t shake the belief that I made a mistake having it.  I was told I wouldn’t come out of the transplant center alive.  I agreed to the transplant over palliative care because I had a stupid, heroic idea that I could be a lab rat, and give Medicine (yes, the upper case is intentional) a breakthrough in the treatment of anaplastic large-cell non-hodgkins lymphoma.

Instead, I just boringly lived.

I want to be happy about that.  But I’m not.  And then, I am even unhappier that I am an ungrateful bitch because I am not happy.

Sorry.

No Illuminati

There is no greater agony than bearing an untold story inside you.  (Maya Angelou)

Just last week I was trying to find a way to express this pain, and Maya Angelou said it for me.  It was a serendipitous discovery, while looking for her exact wording on believing people when they tell you who they are.

I guess there are things I will never say.  Some, to specific people like my kids, husband, or friends.  Other thoughts, feelings, and events would be to the world in general.  While Angelou is completely correct about the agony of that, my filters tell me I’m not up for the intense emotion required of me to actually have these discussions and deal in turn with the emotions, or worse: the lack of others’ emotions, that telling my truth may cause.

I don’t have any delusions that I am some great mystic or prophet.  I know those in my sphere will live their lives without any grand illumination from me.  Actually, I know my untold story has no grand illumination at all, for anyone.  Maybe not even me.

And yet, biting my tongue gets really old.

 

The more things stay the same…

At one point I heard myself saying “I’m tired of being a disease. I want my self back again”.

…the more they change.

Yes, I know I said that backwards.

Living in the Detroit area, a lot of our news coverage the past few days has been of the plea-bargain sentencing of the doctor who, in the guise of medical treatment, sexually abused hundreds (at least) of young girls.  After days of victim impact statements, the Assistant Attorney General (who was the Prosecutor) and then the Judge had their turn.  And one phrase that came up over and over again was about owning one’s truth.

While people don’t own their truth often enough, for women it is a notion that is associated most often with sexual harassment/molestation, or domestic violence.  Think of the Me Too Movement, then hold that thought through a corkscrew turn I am about to make.  Trust me.  This will connect.

With the cancers and treatments, I have been bald three times in the past five and a half years.  I mean: bald as a cue ball.  Each time was at least in part during the winter.  Even with a knit hat, do you have any idea how cold a bald head gets outside in a Michigan winter?  Woo!  And it would grow back to an awkward length, and then – boom! – another cancer, more chemo, and bald again.

It got old.

My last chemo was in early fall of 2016.  Bald.  Then my hair started to grow.  Every now and then I would have it trimmed, just to even out the ragged look.  But never much, because there was never much.  A few more months.  Repeat.

In the past several months, I have made a couple of appointments with the woman who has styled my hair for years.  I was not able to keep either of those appointments.  Although not as robustly as my BC (Before Cancer) hair, it did continue to grow.  Erratically.  Unevenly.  I looked like a bag lady.

Finally, today, all the life elements came together, and I was able to go across town to my stylist’s house, for a trim.

I had no firm idea what I wanted her to do.  She has done my hair for a long time, and has always been on top of trends, so I trusted her to listen to me, then translate that into a better look.  (MDs…learn a lesson from her!)    So I talked.  She asked questions and made comments.  At one point I heard myself saying “I’m tired of being a disease.  I want my self back again”.

And there it was.

I’m tired of being a disease.  I’m tired of being a disease.  Of being perceived as the diseases I have had.  Of living a limited life because of a disease.  Of fearing a government that sees me as a disease and hence, a draw on the bottom line.

I had never thought of it quite that way before, but it’s true.  For the past five and a half years, even I have identified myself as…a disease.

My truth.

This is new for me.  New thinking.  And I have no idea where it will lead, if anywhere.  I considered including a picture of my new hairstyle, but right now that is not the relevant piece of this blog.

My new truth is…itchy.  It’s like a fresh cut, and healing may or may not leave a scar.  But it is my truth, and I am working to own it.

Time to get moving

In April of 2016, due to some serious arm twisting done by my daughter, I walked a 5k with her.  She thought I needed a push, to restart recovery from a stem cell transplant.  I was afraid I couldn’t do it, despite months of walking as training.  I was afraid I would make a fool of myself or embarrass her.  I was afraid race officials would take down the finish line before I reached it.

I was afraid.

But, in one hour and one minute, I finished.

Image may contain: 2 people, people smiling, people standing

The next morning I saw the unmistakable dimple of breast cancer.

Mammogram, ultrasound, and biopsy confirmed what I already knew.  And I was amazingly calm, probably because of the two previous cancers.  So I methodically went from surgery to chemo (and attendant hair and fingernail loss) to radiation.  But I was out of commission for six months for the walking that had become a habit.  And a year later, I haven’t regained that mojo.

So…

I keep seeing television commercials for a 5k run/walk to be held in late April.  I took a chance and asked my son if he would walk it with me, and he said “Yes”!  Now it’s time for me to crank up the walking again.  Because I’m already feeling the twinges of the fears from the last time.

I’ll keep you posted.

New Year

My smaller glass can’t contain both complacent happiness and purpose at the same time.

January 1, 2018

One of the things about being twice-diagnosed as terminal is the almost automatic change in perspective.  How can it not change?  There is now a “use-by date” on life, as opposed to some mysterious date way out in the future.  And even if medicine, or drugs, or holistic treatments such as turmeric or cannabis oil retract the terminal tag…it is impossible to un-see  the end.

I have been uncomfortable with wishing anyone “Happy New Year”, because, frankly, happiness is not first on the list of things I wish for anyone.  It might not even be in the top ten.

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As it turns out, the Rabbi got tripped up by the numbers.  2018 is actually the nineteenth year of the century.  Be that as it may, the rest of this quote resonates with me.  She speaks of a life with purpose, not happiness.  Thus my earlier grocery-store quote of a use-by date.  Happiness may come.  But more likely it will be exhaustion from what is required to live life with empathy and purpose, resilience and compassion.

And purpose can show up when it is least expected.

I believe I have earlier mentioned the appeal to me of being a lab rat when I had my stem cell transplant.  None of the doctors expected me to survive it.  But they pre-treated me with a type of drug that had never been used before in preparation for the transplant.  Whatever happened to me, others would benefit from the knowledge gained.  As a side benefit…I survived.  I cannot say I have always been happy about that.  Recovery from a sct is horrific…grueling…and seemingly never-ending.  I am four-plus years into recovery.  More new knowledge for the doctors.  More exhaustion for me.

I would be happy to be living a comfortable life of retirement with Bob.  Not going to happen.  Comfortable becomes less and less likely, for a variety of reasons.

I would be happy to spend my days with my granddaughter, Sophie, like my mother did with my children.  But geography and our finances make that impossible.

I would be happy to have my family and friends not having to roll their eyes when I go on a political rant.  But I will fight to my dying breath for Sophie’s rights when she is a woman, to be secure.

I’m not saying that it is immoral to seek happiness.  I do believe that pursuit must be kept in better balance than it is currently, in a culture of reality television, plastic surgery, and unbridled greed.  <cue eye rolls>

So:

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My smaller glass can’t contain both complacent happiness and purpose at the same time.

My wish for all is that you find a life of satisfaction, and it fills your smaller glass to overflowing.  And if there is some happiness – good for you!

Black Friday, 2017

First cancer diagnosis in July of 2012, so this is the sixth Thanksgiving I should not have seen.  And I have learned a few things:

  • Under no circumstances bring home a Jenny O “freezer to table” turkey breast, no matter how dire the need, and how empty the turkey coolers are in the grocery store.
  • It is impossible to cook a Thanksgiving dinner without getting grease on your clothes.  Dress accordingly.
  • Smart phone cameras are not smart enough to capture the exact moment canned whipped cream is being squirted into the mouth of a greyhound.
  • The Detroit Lions always find a way to make their opposition for this holiday game look like world-beaters.
  • No matter how much everyone around you at dinner is smiling, there are some – possibly many – who are pretending.  There is not enough tryptophan in the meal to overcome their sorrow and emptiness.
  • “Do we have to do Christmas again this year?” never goes away, no matter how grateful to be alive I am supposed to be.

There are other things I have learned, specific to this year:

  • Although she will be 7 in a few weeks, Sophie can still be conned about fairies and their wings.
  • Watching “The Great Wall” for the first time yesterday morning, I am saddened by how the Trump Era has forcibly expanded my definition of racism.
  • I continue to forget to look for Punkin’ Chunkin’ on the tube, on Thanksgiving evening.  (Did they have it this year?)
  • I made a public statement on FaceBook that I would not shop during this long holiday weekend, and am now wondering if my purchase of an audio book last night makes me a hypocrite.
  • Left over Jenny O turkey breast makes crummy sandwiches.

Next year……….Detroit-style coney dogs, Vernor’s Ginger Ale, and Sander’s Bumpy Cake.

Life lessons

I read this article this morning.  You can read it, or just read my commentary.

https://www.huffingtonpost.com/entry/i-survived-8-cancer-battles-here-are-5-life-lessons_us_5a0f29d7e4b0e30a95850684  (Remember, I am new to this, and not a computer geek, so I have no idea how to make that little thingee that says “here” for this like, without actually showing the whole url……)

I read it because the title suggests the article contains life lessons.  And there are days when I believe I also have life lessons to share.  But then I guessed the author and I have different definitions of “life lessons”.

I was hoping for themes like: “Finding Light In the Darkness”…”Creating Motivation From Nothing”…”How To Really Know When It Is Time To Call a Halt To Treatment”.  Instead, she wrote about knowing family health history and how to negotiate with doctors and insurance companies.  Topics I could – and have – found in waiting room pamphlets.

And yet, I have learned a most valuable lesson from her.  I can’t share my preferred topics with you, either.

First of all, if you have never been seriously or terminally ill yourself, all the information in the Huffington Post article is important to you.  By all means, gather every detail you can about your family and ethnic health history.  It can save your life.  Also, pay close attention to the political and employer battles on health insurance when it is not an issue for you.  Because understanding this information and negotiating with corporations while in panic mode can never end well for you.

What you can’t prepare for, however, is the emotion that no one can possibly explain to you.  I cannot describe to you the knowledge that the greyhound at my feet right now will be my last dog… or how a certain combination of temperature and setting sun recalls for me memories when everything seemed possible…or how often I have to restrain myself from punching someone who calls me “strong” or “brave”, or tells me how “good” I look.

Unless you die instantaneously in a car accident, or we all die together in a nuclear holocaust, you are going to figure out that there is no way to communicate some of the life lessons we can only learn alone.  Usually in the middle of the night.  Always unexplainable.  And completely frustrating.