AKA Terrible, Horrible, No Good, Very Bad October

Blog #33

End of September through October 29

In my last post I promised you a light and bright post reviewing the Trouble with Tractors, Moving Mom and Breathing Lessons.

This is not going to be that post. At all.

At one point in the last few weeks, I asked my sisters if they were sitting down before I told them some news.  They thought I was going to tell them something amazing but silly – mom is fixing the tractor I broke (I did “break” it; she didn’t fix it though), or that we bought a new wardrobe at Cracker Barrel (guilty pleasure; I sometimes do like their clothes), or that mom drove her car to our house (Nope. We trailered it).  But really. Y’all need to brace yourselves. 

My mom died.

The same woman who danced the night away in the last blog post.

I don’t know how to write about this.  It’s so devastating.

On Friday, Sept 30, we drove 4 hours to my mom’s for the second time in about a week. In between she traveled to NYC for Rosh Hashanah to visit my sister. It’s not like she was incapacitated in any way. She was tired, but really didn’t complain. She never does though. Never Did. 

Past tense is hard to get used to.

When she said she was too tired to pack on Thursday, I reminded her that I could help and that there was very little she needed – just clothes and personal effects for the next couple of months. And we could return any time.

Saturday morning, she felt great for a while and then got tired. David and I were putting things in the truck and loading her car in the trailer. We were finally done around 4pm and we departed soon after. A couple of hours into the drive, we stopped for a bathroom break. Walking from the parked truck to the restaurant, mom had to pause to catch her breath. The  same woman who walked the 60-mile 3Day breast cancer fundraiser for Susan G. Komen for the past 10 years had to catch her breath after 50 steps. Let that sink in. 

I called my sister the next day and she suggested contacting her old primary care doctor.  Her old PCP suggested we contact the new PCP on Monday. Turns out there was new blood work from just prior to the move that indicated a very decreased red blood cell count. On her second visit to the new internist, the doctor sent her to the emergency room to get her admitted. The blood work numbers were strange.

She got the most amazing room on the 9^th floor with views of the layered mountains of Asheville. Only my mom could have that kind of luck in a hospital. Morning misty fog was beautiful and sunsets were amazing. She even got to see hot air balloons take off in the distance. Twice. 

The nurses were amazing. The doctors were on it. Her new PCP visited her every morning, explaining everything that had happened and what was planned. She also called and texted us multiple times a day with info from the specialists. Other doctors I know in NY were impressed with the speed and extensive response of the local doctors.

Mom had every kind of test. They put her on oxygen at a low dose of 2 liters as her chest CT showed fluid in her lungs. Every day or two, she needed more, tripling her dose every time. Infectious Disease docs tried to determine if her problems stemmed from bacterial, viral or fungal infections. Hemotology got her transfusions and kept us up to date on her bloodwork and labs. They got her bone marrow biopsy scheduled ASAP on a Friday afternoon. Pulmonology tried to figure out why she had increasing fluid in her lungs and called in a special team on a Sunday to do a bronchoscopy. Rapid response teams rushed in every time her pulse/ox saturation levels dipped – and they went down to high 70s at times. Cardiology called in a cool test, a trans-esophogial echocardiogram, when they thought she might have bacteria on her heart valve. That was another dead end. 

Finally, the bone marrow biopsy results came in. The initial results, the fluid around the marrow. 

Leukemia. Acute Myeloid Leukemia.

It’s a fast-growing form of the disease that affects the elderly and does not have good survival rates. Is that because the older folks have underlying conditions? Or do not respond well to chemo? Or are they are closer to the natural end of their lives?

It was Saturday night.  Probably the only thing the hospital/doctors did wrong in my book is that they told my mom when she was alone in the room. I had gone home to take a shower and run a few errands. Mom’s PCP called to warn me to get to the hospital but the mom was calling at the same time. Mom had me on speaker phone when the doctor told her.  What. WHAT. WHAT is she saying????  I tried to process what was going on while David and I rushed to the hospital. I told my sisters we would have a Facetime call with mom at 6pm. 

I was with mom when I asked them if they were sitting down.

Everyone took it very well (we were all in shock) while they tried to wrap their heads around it.  And then we went into our core characteristics. Anne, the oldest, went into take charge mode and led us through the most important efforts, getting referrals from medical experts across the country. Linda, the youngest, a scientist and engineer, researched the disease in every waking moment. She reviewed the current scientific journal papers and corralled questions from the Leukemia Lymphoma Society to ask the hematologist.  I held mom’s hand, tried to meet her needs while fielding questions and continued keeping everyone up to date with copious notes.

Late Monday, we spoke with the attending hematologist/oncologist, a young woman from the best practice in Asheville that rounds on this floor.  She was new to our case, but the Messino Group had been handling mom’s care since she was admitted. Dr. Miller made rounds at 3pm and I got my sisters on the phone so she could answer all our questions and try to figure out next steps. She spent two hours with us, patiently going through all the options, how they might affect mom and staying positive while being realistic. 

The next day my sisters were working through the best plan of action. Should we move her to Duke or Wake Forest where they see a lot more of these cases? Was the chemo protocol the best and most effective for her? Was a young doctor with the most recent medical training and knowledge best or would an experienced doctor be better? And all of this they were doing from afar. I was still the “boots on the ground,” trying to keep up mom’s spirits, taking care of her needs, while balancing everyone else’s. Was I taking notes so I could share them with my sisters? Or just because I was so sleep deprived I couldn’t remember what day it was? Or so that I didn’t have to look the doctors or my mother in the eye? 

David, my rock, was rocked.  He loved my mom too and the thought of losing her was as deep a hurt as he could bear.  We kept trying to put a brave face on for each other, but outside her room — the tears and heaving sobs. When she said she wanted ice cream, David bought her every flavor. She was never a vanilla person. She wanted whatever sounded the most unusual. 

Our kids, realizing the gravity of the situation, for my mom and for us, came home. They were there to support me doing everything from ferrying family members to the hospital, to food shopping and preparing meals since it had been a week and a half since I was home.  

Tuesday, October 12, one week after she was admitted, the pulmonologist was the one who took me aside leveled with me. She was up to 70% oxygen input (ultimately she got up to 90%). He said there was no absolute contraindication that we could not go ahead with chemo, but the survival rate and quality of life would be limited and that there was not a lot wiggle room from a pulmonary standpoint. We were at a fork in the road in terms of suffering and discomfort. It could be managed, but did mom really want that?

I spoke with my sister-in-law Janice who is a doctor and also had worked in hospice. She agreed with the pulmonologist. In the kindest way possible, she told me to get my sisters to Asheville. I also spoke with her husband Richard, a neuro interventional radiologist. He concurred. Their expertise and thoughtful way they spoke with me and my sisters will never leave me.

Anne flew in from NY on Tuesday night. Linda came soon after on Thursday morning redeye. She chose to spend waking hours Wednesday with mom on the phone and fly overnight.

It’s a blur to me now. I think it was Tuesday mom said she was going to fight this thing. At one point, she asked if we could get the lady who euthanized Toby to come by. Then she was going to take on the chemo. She had a first round of medicine on Tuesday night.  On Wednesday, she threw up and could see what the rest of the “fight” was going to be like. It was only going to get worse — much worse. This is a woman who tracked and killed lions. She shot grizzlies in the northernmost parts of this continent.  She’s faced down three charging Cape Buffalo, took a shot she had never practiced, and stopped the herd.  As one of the bravest people I know, she decided not to let the chemo win. Mom faced death head on.

As many family members as possible flew in. On Thursday night, we all crowded into her room to toast mom.  The nurse put the morphine in her picc line and we raised dixie cups of maple bourbon, a family favorite.  She crooked her finger and I rubbed some on her lips. She shook her head. My sisters realized she wanted a cup and a straw.  With a smile on her face, I think she was toasting us.

On Friday morning, we got a little more time with her.  She talked with us some more.  She had time for a couple of more games of Words with Friends. Mom was a silver lining kind of a person. And she kept her sense of humor.  On Wednesday night, we asked what she wanted for dinner. She said, “You know what? I think I’m going to have ice cream for the rest of my life!”  Playing Words with Friends with her hardest opponents, she wrote one and said, “Do you really think it’s fair to let me die with a losing game? Just sayin’.”  She and dad planned to be buried in the same plot. She said, “You know, this means I’ll be on top – for eternity!” I don’t think she completely understood how funny that was.

She consoled her inconsolable family. She made sure to cancel some flight arrangements. She stopped her continuing supply of ostomy products. She told the clinical trials she was a part of that she would no longer be participating and apologized that it might skew their numbers.  

You might be asking, who does that? My mom. 

Know she was moving in with us, she re-homed her dog as Dani was not good with other dogs. When I went to her home on the way up to NY for the funeral, there was a box to return her Direct TV equipment.  All these “to do” items, too many to mention, we don’t have to think about.

On Friday night, they put the morphine drip in.  I told my family that they should go to dinner.  While I was looking down at photos of her life on her iPad, she left us.  I looked up and she seemed to be sleeping. I checked her pulse. She was gone. I called the nurse to check. My sisters walked in minutes later. We placed her in clean sheets. We walked her to the morgue.

It should have taken more time. Or maybe not. You always think you’ll have more time.

She had 86 amazing years of adventures and love. She got to decide to leave and she passed with a minimum of pain. I’m grateful for the silver linings.

Still, I was looking forward to so many things with her: exploring Asheville, joining book clubs, cooking together, meeting new people, seeing independent movies, getting her to teach me to be a better shot.

Most of all I just wanted to hug her and love her a little bit more. 

We made funeral arrangements on Long Island as she was to be buried with my dad. We managed to get the remains to NY by Sunday, but two consecutive Jewish holidays delayed the funeral until Wednesday.  It gave David and me time to say good bye to the kids, load up the Airstream, stop off at mom’s farm and grieve with her farm manager and drive up to NY with one of our kids. 

I wrote part of my eulogy on the Tuesday drive up. When I got to Anne’s in Chappaqua, my sisters and I collaborated to make sure we didn’t all tell the same stories. Reminiscing was so sad, but the act of reading, editing and re-reading helped us get through the funeral without too much breaking down. I’d include my sisters’ eulogies but we went kind off script with many more stories.

It was great to see family and old friends. The next few days of shivah went by like a tidal wave. Everyone was there and I couldn’t keep my head above water trying to say hello to all. Then it petered out until there were just a few people on Friday morning. 

My sisters and I scrolled through our phones for pictures of mom. We created a shared photo album and Anne connected it to her TV. Some of the photos were so old, I had never seen them before. It was a great way to share her life with friends during the shivah. Here are a few:

David and I stayed through the weekend.  We had a great time with Anne and Stu and even got a chance to pop down to Long Island on Sunday and see some friends. Monday we boarded the dogs in preparation for…

David’s Back Surgery

He’s been having tingling and pain in his hand for 9 months. He had surgery this summer to relieve the nerve but scans show it’s a nerve impingement in the neck (cervical) portion of the back bone. We planned surgery for October 25 about 2 months ago. My aunt and uncle offered their beautiful apartment in NYC for recovery while they are out on Long Island. And David’s sister Amy lives nearby so she and her husband Jeff were very helpful during this whole process.

The surgery went well. The doctor talked to me afterwards (and Amy who waited with me) to say they worked on both sides of the neck and that he could clearly see how the nerve was irritated. 

The fun part was David coming out of general anesthesia, which he had never had before.  It’s like talking to him while he’s going to sleep; he sounds like he’s having a conversation but in reality, he has no idea he’s even speaking. It made for some interesting scenarios since he was texting random people that he was in pain or that they were kicking him out. The nurse was right next to him managing his care, but it unnerved the text recipients.  That was my own doing since I gave him his phone after the surgery to let him listen to books or music. I thought that might relax him.  Anyway, I made a few apologetic phone calls. 

Ultimately, although it was outpatient surgery, he had to stay overnight. It took him a long time to fully wake up from anesthesia and then he couldn’t “void” on his own. Turns out they won’t let you leave unless you can prove you’re a real pisser. He was “relieved”, that we could leave the next morning.

Most of the instructions for back surgery post op care don’t apply to David since they didn’t work on any discs.  Yay!  He still is uncomfortable but every day he’s more mobile. We should leave NYC this weekend, pick up the dogs and head down to Asheville with the Airstream which is still parked at my sister’s.   Who came down with Covid on Monday night.  Along with friends I visited last Sunday.  We’re testing but so far negative.

So that’s it for October. One less traveler on the Long and Weinstein Road. Mom died, David had back surgery and we’ve been exposed to Covid.  I’m ready to turn the page in the calendar.

###

Including my eulogy below. My sisters told more stories that were indicative of the multifaceted person my mom was.

My Eulogy for Mom

First of all, we want to acknowledge everyone who came from far and near to be with us today as we remember Mom. Thank you thank you thank you. We’ll admit…it has been a rough week. 

“When I grow up, I want to be like your mom.” It’s a phrase that I’ve heard from many women who’ve met her. It didn’t matter what age they were, they saw someone who had a life that they wanted and aspire to. 

But it wasn’t the life per se – it was her attitude. She was a can-do person who saw her life as an adventure, an opportunity to challenge herself and learn new things. And she was an example to us all

Who else takes up Pilates at the age of 80? Or buys a camper van so she could travel around the country — at 83 — And she made new friends through Airstream clubs and visited alpaca farms to help with shearing.

She was always on the bleeding edge of any new trend. In the 1960s, she was willing to go against the grain, choosing instead to breast feed her children in an era where that was just not done.  In the early 70s, it was a health kick that included quitting smoking, running, making her own yogurt and granola. In the 80s, she saw her daughters going off to college and thought – now is the time to start graduate school — and got a masters in accounting. 

My family is a bunch of avid readers, probably because mom modeled this behavior.  When I was in college (maybe before) my mom was a founding member of a group that read Shakespeare – all of it – over the course of years with a professor to moderate. They went together on trips to visit the Globe Theater and we heard about their adventures together.

Years later, I belonged to book clubs and when I moved to a new town, I started another. It developed strong bonds and friendships that continue to this day. I was lucky enough to have her come visit and participate in ours making insightful comments. And I was lucky enough to visit her in NC and visit her group – twice. It’s something we could share. 

And her modeling of leadership roles led my sisters and me to various volunteer roles, too many to mention. Mom gave her heart and her mind to her community. She didn’t tell us to, we just knew that was something you did.For the past 10 or so years, I’ve been leading a group to Canyon Ranch and my mom has come every time, often with my sisters.

Yes, we enjoyed facials and spa services together. But the trip gave her the chance to know another side of me — and me of her. She got to know my friends and they got to know her….

And marvel at the woman who would try the high ropes class. One time, the professionals leading the group noticed she was the only one signed up — and it was drizzling. They asked, “Would you like to go a different day, or maybe change to a different service?” She flatly refused and astonished them with her ability and bravery under less than ideal conditions. I didn’t really understand what that meant until the last time we went, and she signed up again. I tried to get on the list but the group was full. She gave up her spot for me and recorded my entire adventure.

I tried it. Oh My Goodness.  It wasn’t just frightening being up 20 feet in the air, on a literal tight rope, jumping or crawling from platform to platform, it was physically HARD. Really strenuous! I realized something she was trying to teach me. If you breathe and relax, even though it’s scary, you can face your fears. 

I’m going to say just it. Mom was a hunter. It may shock some of you that this nice beautifully coiffed woman from Sands Point would go out to countries you’ve never even heard of to seek big game. One night she could be at a black-tie affair and the next day getting on the plane to Cameroon. It enabled her to see a lot of the world that others only dream of – and maybe read about in books.

Maybe you know this, maybe you don’t, hunting isn’t all about getting your final quarry. It’s about the journey.  It’s about jumping through the licensing hoops, it’s about the logistical challenges of the travel. It’s about the physical rigors of sleeping in an icy tent or getting malaria shots and worrying about tropical disease. It’s about the tracking, knowing the biology of the animal, their mating habits, their prey, how they live. It’s about educating yourself and even if you don’t come back with your intended trophy, it was a thrill. 

One time my mom came back from Africa, Tanzania maybe, and her nails were broken halfway down her fingers. Wincing in pain, I asked mom what happened. She said, “I was hunting lions.” I said, “Well of course, I know that, but what happened to your nails? She said, “I was hunting lions.” I looked at her blankly and she continued. “When you hunt lions,” she said, “you have to be sure to be down wind. It’s a pack and the females may be ranging round. You don’t want to be seen or smelled. So, we lie on the ground and sight in and old one. We had to crawl on our bellies in the grasses and dirt. And while I was clawing my way forward, the nails came off.”

She had the single-minded focus of living in the moment.

And yet, there were many facets to her bravery. She took care of dad for the last 10 years of his life when he was diagnosed with Parkinson’s. She researched and supported him through all the therapies: large motor skills, fine motor skills, voice projection, etc. She had help, but she was there every step of the way. She knew how tough the end would be, with dementia, and it was. Other people might have sought respite and sent him to a care facility. Not her. She wanted the best for dad and made sure he had it.

I was looking forward to mom’s next chapter. She moved in with David and I a mere 2 days before she was admitted to the hospital.  She asked me when she could learn how to drive our tractor. She was already hunting for her next things to research and adventures to have. I was looking forward to starting a new life with her: initiating a new book club, volunteering at some new organization, maybe taking some new people to Canyon Ranch, learning how to be a better shot.  I don’t know what adventures you are on now mom, but you give me something to shoot for.