Farewell, Little Pookha

Pookha was a second-class citizen.  She would have told you that, had you ever asked her.  Poor Little Pookha.

December, 2003.  It is early morning, and I am sitting on the toilet.  Bob walks in, with a little meowing kitten at his heels.  I look up.  "What the hell are you thinking?  We *really* don't need another cat!"

He logically pointed out that he himself was still in a state of undress and had not really gone out shopping for a kitten.  Rather, he had looked out, seen something on the hood of the truck, and when he opened the door this kitten, about two months old, came running into the house.

It was not an auspicious beginning.  I pointed out that I was now in graduate school, was going to start teaching for the first time in a few weeks, that I had too much on my plate, and not ready for another kitten.  Who meowed piteously.  Who seemed really really sad that I didn't recognize her as my cat.

So of course after the usual round of posting flyers and trying to find her a home, we adopted her.  But I don't think she ever got over that original sense of rejection.

She was the neediest cat we ever had.  Meowed constantly, always wanting attention.  Many is the time I would hear Bob yelling in the kitchen "Dammit, Pookha.  I've given you dry food, canned food, special treats, and some cheese.  Just what the hell do you want???"   And, of course, the answer was that she wanted attention.  When you were trying to cook she would paw at your back.  If you were on the phone, the other end could hear her meowing.

Pookha trying to get Bob's attention

The only time she was happy (or at least somehow contented) is if she were being held on my chest.  Not my lap, but my chest.  She would be on my lap, but then reach up, dig her claws into my right shoulder, and haul herself up.  Most of my T-shirts are ripped on that shoulder, and I have permanent scars.

If we were feeling mean, we would stand slightly out of her reach, and then start consoling her with "Poor Pookha.  Poor sad little Pookha.  Pookha thinks nobody loves her.  Pookha thinks nobody cares for her.  No one ever pays any attention to poor pathetic Pookha."

And by then she would be going bat sh*t crazy and practically screaming.  And I would cuddle her and she would dig her claws into my shoulder.

I would sum her up at the vet's office.  "She's a crazy-ass neurotic little cat.  But she's MY crazy ass neurotic little cat."  My little gray cat with the big emerald eyes and little brick nose.

Pookha passed away a few months after Fiona, before we went to Gainesville.  And like Fiona, we didn't want spreading her ashes to be a rush job, distracted by Bob's treatments.

And suddenly the house was a little bit emptier, and a whole lot quieter.

Fiona is going with Bob, but Pookha was my cat (crazy ass neurotic, but mine) and is staying with me.  The butterfly garden hadn't gotten it's usual winter cleanup, but I've been spending some time out there getting last years dead stems and fallen branches cleaned up.  Today her ashes went under the gardenia, and I'll think of her when it blooms.

Goodbye, little Pookha.  The scars on my shoulder will heal, but you will always be in my heart.

Major Deaths

In a moment of self-pity I  was texting a friend yesterday the "timeline of my mourning"

And I just realized that I need a better term than "major deaths" because that would automatically make any other "minor deaths" and that's not how I view anyone's life.

But until a better term comes along . . .

A "major" death is that of someone close to you.  Your lives are involved with each other.  Losing them is like losing a limb.  It's usually a family member or a close friend.  And you never really stop missing them.

So--the self pity?  Or maybe just the feeling of eternal mourning?

January 1, 2005.  Jed O'Connor.  We had been close friends for over 20 years.  Sudden heart attack
April 24, 2008.  Bob's mother.  Long term illness; amyloidosis. Was sick for four years
December 9, 2009.  Bob's father, COPD.  Ill for about a year
December 8, 2012.  My mother.  Had had issues for several years; final decline took 6 months
December 17, 2015.  My father.  Just gave up after my mother died.  Broke his ribs a few months
                                  later and just stayed in bed for the next 2.5 years.
March 30, 2020.    Bob died after 8 months of treatment.


The math major in me kicks in (both my brother and myself tend to quantify things)

January 1, 2005 to March 30, 2020 is what?  15 years and 3 months, aka 183 months.  Of that time, there were 3 years and 7 months (aka 43 months, after my father died and before Bob's diagnosis) that we weren't visiting ill parents and spending time in hospitals, nursing homes, and clinics.  That's 76% of that time, or 11 years, 8 months of dealing with illness and death of  six people close to me.

I am very grateful for 3 years and 7 months I had with Bob after we thought it was all over and we could relax for awhile.  I'm very very happy that we retired early so basically had a vacation for that time.

But maybe the statistics show why I just feel so broken.  But also why I realize that I am actually quite a strong person.  As I promised Bob--for his sake, if not for my own, I *will* build a new life, and I will try to make it a very good one.

Where Do I Go From Here?

Honestly, I don't know where to go from here.

There are the clichés:  Get back in the saddle.  Move forward with your life.

In the saddle??  Hell, I don't even know where to find a horse.   Move forward?  We're in shutdown.  I can't move anywhere.

Monday I will have been home four weeks.  The days are long, the nights are longer--but it seems like no time at all has elapsed since I said goodbye.

The first week was a fog.  I was emotionally and physically exhausted.   I was used to being on edge.  And there were things to do.  For one--when the Rob and Jeff brought me home, the AC was dead.  Men came out the next day to look and Wednesday I had a new unit put in.  Reddbugg got a UTI and I had to go get antibiotics for him.   There was a lot of banging in the water pipes so I had to remember how to bleed the excess air from the water tank.  It occurred to me to check the tire pressure on the Honda that hadn't been driven for months.  A couple of tires were low; I went to the gas station but they don't have an air pump anymore, so I scrounged in the barn and found the portable one.

Yes, I can take care of things by myself.  Just wish I didn't have to.

And I kept thinking that I needed to Move Forward.  I had Things To Do.  The cats are due for their shots (uh, not now.  Pandemic).  I had that tooth pulled before we went to Gainesville--now I can finally schedule the replacement (nope, pandemic).  I can visit my friends that I have missed so much (nope).  Getting harder to read street signs when I drive--should schedule that eye appointment (nope, not that either).  Maybe I could take an exercise class, or an art class (nope nope nope)

See where I'm going with this?  Nowhere.

There were people to call.  Forms to fill.  And I bit the bullet and went through Bob's clothes.  God knows how much I loved him, but he was a hoarder when it came to his clothes.  Hundreds of pairs of socks, hundreds of T shirts.  Over the next three weekends I took some 30 trash bags of stuff too old/grungy to donate to the dump.  Which killed my little environmentalist heart.  I would have liked to find a place that recycled textiles -- Goodwill does, but not In These Times.  I still have six overflowing laundry baskets of stuff good enough to donate when we're allowed to donate again (some of it never worn), and it all needs to be washed (some of it's been hanging in the closet for 20 years.)  These are shoes and boots he hadn't worn for years because they didn't fit him:

And now I look at the empty shelves and the empty closet and it just tears my heart out.  Was it too soon?  Don't know, and it's too late now.  I've talked to people who have waited a year or more to clean out--and apparently it just hurts all over again.  I did save a couple of T shirts to cuddle and a few jackets to see if our great nephew Dane wants them.

I made marmalade and started some limoncello.  Sort of a random thing to do.  But there were still some lemons on the tree.  Bob would have hated to see them wasted.

But forward?  Even baby steps?  I don't want to.  Every baby step, every day, is a bit farther away from my life with Bob.  And I really don't want to leave that behind.  Especially now, when there seems to be nothing in front of me.

Amanda sent me a journal:

Like the rest of my journal collection, I might never write in it.  While I write here, in the blog, it's not the same as committing to paper.  But I like having it around.

And I found a postcard stuck on the wall in Bob's room:

That's a keeper.

Bob's room.  Who knows when I'll be able to tackle that?  People have asked me if its hard to go in there.  Oddly, no.  I've always liked being in his room (he enjoyed visiting my cottage).  His ashes are on his workbench.  I'll have to give them up in a couple of weeks for the reef, but I'll miss them (I might keep just a little, as a keepsake.  I also plan to spread some around here.)  But when I open that door I know that it will be Essence of Bob in there.   It's the unexpected that gets me.  I was rummaging in my knitting bag this morning and found his cell phone.  That took me to my knees for a moment.

I cleaned a lot of pictures off my phone today.  Pictures that were going to be part of the "Bob survived cancer" story.  They're not gone; the story is still there, so I have archived them.  But I don't need the sadness of carrying them around with me.

But I did keep one of him in the hospital.  Still had his hair (although I had cut off his braid before we left so he wouldn't get bed head).  It's the day he got his first transplant; hence, the Mardi Gras beads and gift bag.

Zoom in.  Look at those eyes.  That was always how he looked at me.  So gentle.  So. Much. Love.  A bit of humor, like we had a secret joke between us.

How can I take even baby steps away from that?

Pandemic

Soon after Bob went back in the hospital again, we started hearing news of strange happenings "out there."  "Out There" referred to the world below us, sequestered in our room on the 7th floor.  Some sort of virus from China.  Some people in the US were coming down with it.

It didn't affect us.  We were in a hospital room.  Everyone who came in put on sanitizer when they entered and washed their hands before they left.  If I stepped out of the room, I used sanitizer (or washed my hands) and put on a mask.  This was normal behavior.

But up there in our bubble, we heard of things.  Stores being stripped of toilet paper and chlorox and rice and pasta.  I called my brother on his birthday (March 13; Bob was in intensive care).  He and his wife had planned on going out to dinner, but she had a cough (allergy season) and didn't want to panic people in a restaurant.  Better to stay home.  Bob was in intensive care; I was in a hotel.  The next morning I go down to the hotel breakfast and the waffle station wasn't there, nor the oatmeal or the fruit.

 I saw a little of it. One of the things that Bob could keep down was tomato soup.  He could get it on his tray but it was thin and watery.  I would go buy the microwave soups that were thick and tasty and had lots of calories.  I ventured out to Publix.  At first it all seemed normal--the deli counter, the produce section.  Then I went to get the soup--and it was rationed at 2 cans per customer. I turn down the paper aisle and the shelves were empty.  Odd.

A few days later I went to WalMart.  There was a limit on how many people could go in, carts were wiped before you got them.  As in Publix, much of it normal, much of it very odd.  No ration on soups but there weren't many on the shelf.  No human check out--it was all self serve.

But I still thought of it as "out there."  It would be all right when we got home.  Although Gill told me that her husband was now working from home.  Her pool had closed.    I heard of restaurants closing.

It moved in.  I had to wear a wristband to show that I was allowed to be in the ward.  If I left the building I had to have my temperature checked to come back in.  The boxes of masks that used to line the hallways were gone.  People had been stealing them so instead they were doled out as needed. (stealing them??  Seriously?  You're stealing them from people who are seriously immune compromised?).

I had thought, when Bob insisted that I keep the hotel room, that from time to time I could use the gym or the swimming pool.  But they closed.  There were fewer and fewer cars in the parking lot; the hotel smelled of disinfectant.

After Bob died, Rob and Jeff came to get me.  They called when they arrived because Jeff didn't want to come into the hotel.  We have been friends a very long time.  And I had lost my husband and their friend.  But there was no running to each other.  We had to pause and think about hugging (Rob shamed Jeff into hugging me.)

They brought me home, where I wanted to be.  But it's not normal.  Not that it could ever be, with Bob gone.  But it's not normal at all.  There should have been people coming to see me, or asking me to join them for walks or lunch or tea or just to hold me and let me cry.  There should have been a memorial service and casseroles.  But I'm just here, alone with the cats.

Oddly, my mind tries to connect the two (because minds are storytelling machines).  I feel like a pariah.  An outcast.  I am a bereaved widow, therefore no one should see me or talk to me or, especially, touch me.

I am untouchable. Alone.

Timeline and Pandemic

I've been trying to get my head around the three months that I was gone.  Sometimes it seems like a piece of time was lifted out of my life.  That Gainesville was a dream and now I can wake up.

I look at the calendar on the wall.  It still says January.  I was cleaning out a kitchen cabinet and was wondering at all the opened partial bags of dried fruit--raisins, currents, pineapple, apricots.  Then I remembered--they're the remnants of Christmas baking.  Normally by now they would have been used up on cereal or oatmeal or sweet breads.  I'm waiting for winter--but it's over.  Wondering when the azaleas will bloom--but they already have.  Why are the peacock's tails fully grown in? Usually in January they're just starting to come back.

Trying to fix a timeline.  January 7 we went to Gainesville.  He had chemo for four days; Della came to donate her bone marrow and he received that on the 13th.  After that it was simply a matter of waiting.  The chemo had destroyed his bone marrow and the new cells had to start growing.

He got sick, as expected (chemo is brutal).  He lost his hair (but could really rock the look).  The beard followed a few days later.

Jan 23 he got sick with a viral infection.  He recovered, but it delayed the graft.  Finally, after 19 days of 0 neutrophils (the important white blood cell count), the numbers ticked upward.  When they hit 1000, on Friday, Feb. 7, he was released and on the road to recovery.

We still had to stay in Gainesville; he was still very ill and had to be seen every day.  Things immediately went wrong.  On Saturday his count was 487.  Sunday 250.  A few days later, back to 0.

More waiting.  More going to the clinic every day--for platelets, for transfusions.  Waiting for the numbers to tick up again.  Another bone marrow biopsy showing that the graft had failed.  A call to Della to donate again (stem cells rather than bone marrow this time).  God bless that woman--she came immediately.  Waiting for her tests, for her pretreatment, for her two days of harvesting.  He went back into the hospital on February 26, went through 5 more days of chemo, and received his second transplant on March 4.

More waiting.  Stem cells are more aggressive than marrow.  His bones ached, he spiked a fever, and ended up in intensive care on the 13th.  Two days, then back on the ward.  Kept getting sicker--kept being told he would feel better when the graft took.  Which should take 1-2 weeks after the transplant.  Then 2-3 weeks.  By 21 days at the latest.  He did vent frustration-- "they keep moving the goal post!"  He developed a bacterial infection in his blood, a fungal infection in his lungs; the drugs to control those took down his kidneys and he went on dialysis.

His team of doctors still thought he could recover, after the graft took.  But day 21 (Wednesday, March 25) came and went with no shift in numbers.  Another bone marrow biopsy was scheduled for the following Monday.  We asked the doctor what would happen if it showed the graft had not taken.  We got, in response, a poker face and the answer "we'll see what the biopsy says."  After she left, we looked at each other and said "we don't think there's a plan C".  Thursday, March 26, we began to accept that he was not going to survive.  Friday he was back in intensive care.  We were waiting until Monday, for the biopsy, and then for Wednesday, when the results would be back in.  When we would know if there was a chance for survival.  Saturday night he sat up and yelled "WHY DO I HAVE TO WAIT??"

I asked him what he meant.  He said that he was too broken. That even if the graft was taking, there would be too many months of fighting for recovery.  That he was too tired.  That he couldn't fight anymore.  That he didn't want to wait for someone else to tell him it was over.  That for once, he wanted to have control of his life again, if only to leave it on his own terms.  That he wanted me to let him go.

So there is my timeline.  Maybe now it will stop its eternal running in circles in my head.

I was also going to write about the pandemic, how that timeline was woven into his.  Next post.

Love Alters Not

Shakespeare's Sonnet #116

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no; it is an ever-fixed mark,
That looks on tempests, and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
   If this be error and upon me proved,
   I never writ, nor no man ever loved. 

I was going to write about how, as time went on, Bob and I loved each other more.  Time took away parents and friends.  Knees weakened, stamina lessened, various body parts drooped.  And yet, we would look at each other almost in wonder that after 48 years we were still together.  

But my words can become maudlin. Shakespeare said it better.

Bob and Fiona

Towards the end of his life, Bob's lifelong stentorian voice became lighter, softer, like a very tired compliant child.  He spoke little, mostly answering any questions or requests with a very quiet "Okay."

We had planned our cremations years ago (because we are people who Make A Plan).  And his ashes will eventually go into concrete to become part of an artificial reef.  We didn't have to discuss this.

But, I did have one idea.

"Bob, would you like to take Fiona with you?"

He had rescued Fiona 20+ years ago, when she was a tiny kitten unconscious on a hot sidewalk.  And she was his cat from then on, sleeping on his pillow (and letting him know when it was time for breakfast), watching TV with him (sitting on the back of the chair with her front paws resting on his shoulder, generally being wherever he was.

But age claimed her, and we had to put her down the same morning that Bob received his diagnosis.

We had her cremated, with the idea of spreading her ashes in the butterfly garden.  But we were distracted by Bob's diagnosis, scared, starting treatment, going to the clinic, going to Shands for consultation.  Bob wasn't prepared to let her go in the middle of all that.  He wanted it to be at a time when he could focus on her.

We did have a plan.  On July 9, the anniversary of his diagnosis and her passing, after he was home, we would let her go.

But I thought, now, that they could go together.

The soft tired little voice, tinged with a bit of hope

"Fiona can go with me?'

Yes

"I would like to take Fiona with me."  And with a little smile he went back to sleep.


Today I brought his ashes home.  And I opened the case, and tucked in the tiny bag that held Fiona.  He doesn't have to go alone.

Remembering

There is a part of me that wants to put the time we were in Gainesville, January 7 to March 30, in a box buried in the back of my mind, labelled "Do Not Open."  I want to forget that it ever happened.

But that would be a disservice to me, who lived through the most intense period of my life.  It would be a disservice to the many people who were so kind to us.  And most of all, it would be a disservice to Bob, who went through this because of the love he felt for me and our family.

There is much that I will not dwell upon--what happened to him, physically.  That is not my story to tell.

But there is much I wish to remember.

I am grateful to whoever took a holding pond and landscaped it and put in benches and gave a place for a little blue heron and a *lot* of turtles to live.  It gave me a tiny bit of nature, I place I could escape to and walk for a few minutes.  (I am not so grateful for the number of people who used it as a smoking area.  You were in front of a frickin' cancer hospital.  What does it take to get your attention?)

I am grateful to the total strangers who let me pet their dogs.  And to whoever set up housing and a feed station for the feral cats, so that I could sit and look at them.

I am grateful to the nurse who kept telling Bob that as soon as he was allowed to step outside she would bring her cat to visit him (it never happened, but the thought made him happy)

I will be eternally indebted to Mac, who babysat our house for far longer than she thought she would have to, and who sent a steady stream of videos and pictures to us.  It kept us assured that we had a home and our cats to return to.

I am grateful to the support of my friends, especially to my text group "gang" (Gill, Kim, Jeff, and Diane) who kept me going with an endless stream of good thoughts, dirty jokes, and cartoons.

I am grateful to the nurse (Susan) who moved us from our original room, which faced other towers of Shands hospital, to one across the hall with the beautiful view of Payne's Prairie.

I do not want to forget any of the nurses, or his doctors, who did everything and anything they could think of to make him more comfortable, to do anything at all for him, or just to sit and chat.  They treated us like human beings, not just patients.

His birthday, January 27.  When the entire staff came in with a balloon and cake and sang "Happy Birthday."

I want to remember Tanisha.  I teased her one time because I caught her restocking some shelves, wearing her earbuds, and busting out some moves.  From then on, every time we saw each other we'd do our dance moves.  Because no matter what, you have to keep dancing.

So Bob and I danced.  It's very important when you're trying to get your donor cells to graft that you keep moving.  They want the patients to walk the halls around the nurses station as much as possible.  But Bob, despite all precautions, developed a viral infection (we all carry germs/viruses within us) and was confined to his room.  They moved in an exercise bike but his knees couldn't handle it.  So he had to pace the room like a confined bear.  Except for the day we put on the music and started dancing.

Dancing with Bob.  Because no matter what, we were together, and that officially makes it A Date.  And he started laughing--because outside of the nurse's observation window, there was quite the little crowd cheering us on.  They had never seen a patient dancing before.

Squeezing into the bed with him to watch videos on the laptop.  His hand stroking my hair.

There were almost daily cognitive checks.  Mr. Durham, what is your full name?  When is your birthday?  Can you tell us where you are?  Who is that lady standing beside you?  At the last question he turned to look at me, his eyes and voice, so gentle.

"The love of my life."

The number of times towards the end, after I had said that I would let him go, that I would look at him, into his eyes, and say "Tell me that you love me.  Because I will have to go a very long time without hearing that."  And he always said it.

And I never, ever, want to forget his grace and courage.  No matter how harsh the realities, how endlessly unbearable things became for him, he never once said a harsh, rude, or even abrupt word to a nurse.  There was always a pleasantry, even if through gritted teeth.  He was kind and gentle down to the depths of his soul.  Those three months together were the harshest, but the most intense, and the closest of our lives together, and I will always, always remember them.

The End; a Beginning

On March 30, 2020, at 9: 00, my life ended.

Bob died.

We were so positive.  We had such a good attitude.  We knew he could beat this thing.  He had sailed through the conditioning chemo.  His blood counts were good.  There was no cancer in his blood (or a biopsy showed, in his bone marrow).  But MDS is a "sticky" cancer.  It can lurk inside the bones.  We were told that the drugs could hold it back, but not indefinitely.

We knew this.  Our friend Anna had responded so well to the drugs to treat her cancer.  Big tumors got smaller; smaller ones went away.  That worked for about a year; then suddenly they stopped working and we attended her funeral 6 weeks later.  This underscored that we really did have to take the next step, the one that would give his life back: the bone marrow transplant.  It was underscored again when we checked into the hospital at Shands and I spoke with another caregiver.  Her husband had been "cured" by drug therapy two years previously.  Then it roared back and he was in for his transplant.

We had to do this.  We hadn't had enough time together.

I don't know how much I'm going to write of our time in Gainesville.   Simply put, it didn't work.  He had the bone marrow transplant.  It took about a week longer than expected to graft.  And then it failed.  And he went through that brutality a second time, and it didn't graft in time.

 I have a lot to deal with, and to work out.  I just want to put it in a box in the back of my mind, labelled "do not open".  But yesterday I broke down and lay down on the floor and screamed of loss and sorrow.

And I think I had to scream, for that poor woman who had to stay strong, who had to stand by him, to support him, to stay positive, for that three long months as she watched him  die.  It was so brutal, and I couldn't react to it.

I talked with Amanda last night.  She said that when Bob was able to call her to say goodbye, that he had decided to end treatment and die on his own terms, she tried to stay strong and support him and tell him she loved him and to thank him for being in her life.  And then, when she hung up, she collapsed and wept.

I helped him make that phone call.  And the one to his sister.  And I looked in his eyes and said "yes" when he asked me to let him go.  But I couldn't collapse; I was still his strength.

But it is over, along with my life.

You see, when you live and love with someone, you merge.  Everyday life, from what you eat for breakfast to major life changes, is done in the context that it will affect the other person.  It's a dance, a ballet, often a compromise.  We were BobandAnn (sung to the Beach Boys song--Bob Bob Bob, Bob Bob and Ann).  Our little grandnephew Zeke use to call us both Uncle BobAnn until he was old enough to understand we were two separate people.  We of course had our individual lives, but in that Venn diagram there was a big overlap that was BobAnn.  Now it's just me--a lone circle with a big crescent bite taken out of it.

I look around at the house, the land, the cats, and realize they aren't "ours" anymore.  They're mine.
And I have to figure out who I am now.  As I told the motel clerk when I checked out, when he offered his sympathy "I have to go make a new life now.  For his sake, I will try to make it a good one."

Two pictures, taken a few months before we met.  The last time we were two separate people.