Another Goodbye

Continued from No Such Thing as Perfect

“A daughter without her mother is a woman broken. It is a loss that turns to arthritis and settles deep into her bones. ”  ~ Kristin Hannah

My aunt was rather frantic about not being able to get ahold of mom but after explaining she was in Mexico, she agreed to call and talk with Abee who would know how to get through to mom. Not long after that first conversation, she called back to tell me that she had just learned that mom was in the hospital in Cabo. Wait, what?

Why hadn’t someone called? What was wrong? She gave me the phone number that Abee had given her and I proceeded to call myself. It took a few hours until the phone I was calling to get answered and the woman who said hello resembled an extremely weakened version of my mother.

It seems that she had come down with what she thought was the flu. She had believed that if she just rested, she would feel better and two weeks went by before she realized that she was in trouble. By then, she was so weak that she couldn’t take herself to the bathroom and her cousin insisted that she be taken to the hospital. Upon arriving, they realized that her blood disease had escalated, it had spontaneously transitioned into secondary acute leukemia. Mom explained that they wouldn’t let her fly but that her cousin was attempting to get a helicopter to transport her to the closest US city – San Diego. She was simultaneously attempting to cope with the grief from losing her mother who had been a guiding force in her life while feeling crappy and worrying about being in a foreign country. Sometimes, life sent the sourest lemons.

I discovered that Abee was communicating with the cousin in order to meet mom’s transport in California. Within a couple of days, they were both in San Diego and I was speaking directly with the doctor who was caring for mom. It wasn’t good. Her white blood count was in the hundreds of thousands and clogging her organs. He explained that this was a result of the radioactive treatments she had had after her diagnosis of Polycythemia Vera several decades ago; it had just been a matter of time.

I immediately began researching doctors who were experimenting with this problem and found one at Penn Medicine in Philadelphia who agreed to see her immediately if we could get her back to the East Coast. The West Coasts doctors explained that it would be challenging due to the condition of her lungs but that they were making every effort possible. We were waiting with bated breath.

A couple of more days went by and by then, my other two sisters were at my house, thinking that mom was going to be arriving in Philadelphia any day. After a couple more conversations with the physicians caring for her, it was obvious that her condition was far graver than we had hoped. We collectively decided that we would go to San Diego as well. We, three girls, booked flights out of Philly and our brother arranged to meet us there. It was rather hectic getting everything organized and choreographed for an immediate departure but we did it even though I have a distinct memory of arriving at the airport late, running through security by begging people to let us advance crying ‘our mother is dying, we have to make our flight’… two of us got to the gate in advance and made quite the scene as we waited for our other sister to get there; she has a physical impairment that made running impossible.

We made the flight.

So, there we were, all five of us at the hospital, camped outside of mom’s room, realizing that we hadn’t all been together in years now. In fact, I hadn’t talked to Abee in almost a dozen or more months and there were varying degrees of relational disturbance between each sibling combination. We put our personal differences aside and sat outside the room as the children of the woman within. An outsider would never have known how much dysfunction existed in-between us.

Mom was in pretty good spirits but the mere presence of every one of her children was suspect for a good outcome. She realized how sick she was and the doctors were not holding back at this point. Her goal was simply getting strong enough so that she could fly home and die there. She didn’t want to leave the world from the berth of a hospital room. We took turns staying with her, making sure to get at least some sleep every few hours. It was apparent after only a day that this was our time with her. Even though they were running her blood through a machine to separate out white blood cells, her body was making them faster than it would filter. As her body became overloaded, the kidneys couldn’t function properly and she settled into renal failure.

During one awake period when I alone, was sitting with her she beckoned me up on the bed. I scooted up along the side of her, resting my head in the crook of her arm just as I had done a gazillion times. It didn’t matter that I was a forty-something-year-old woman with children of my own. I was struggling to be courageous, to hold in the deluge of emotion that had been damned so haphazardly over the last ten days but I could not. Tears silently unloaded themselves across my cheeks and onto her shoulder as she said: “it looks like I’m not going to make it out of this one”.

“Oh mama”, I cried. Unleashing sorrow beyond comprehension.

This woman, in all her contradiction, was my post, the anchor, the nucleus of everything that I knew to be. She had left, come back, diverged, and suffered a devastating splintering of familial dreams over and over… she was also tired and sought relief. We chatted a bit, reminisced, and tried to laugh about things that were completely inconsequential and then she offered some final thoughts. “You are strong enough to live without Hubby” and paused, “Abee isn’t,” she said… “but if you want him, go get him”.

 

By morning, she was delirious as the organic poisons took over her body. She lost consciousness soon after and we moved her into a Hospice facility that sat high up on a hill so that the entire city of San Diego was visible. Her room overlooked – way in the distance – the Pacific Ocean and if she had been awake, she would have been completely satisfied with the view from her bed. For the second time since the turn of the century, we were navigating the experience of end of life care for a parent and we were crushed with the reality.  Just days ago, her own mother had left this earth as if mom needed an escort into the beyond. We would be mourning two of the family’s most treasured souls.

She slipped away before all the paperwork could be completed, before all of us settled into her space and we stood there – all five of us – not believing that this day had come, wanting it to be undone, wishing that life worked differently.

I was officially an orphan.

Hi Mom

“I realized when you look at your mother, you are looking at the purest love you will ever know.” —Mitch Albom

Shortly after we moved into our new home my mom got sick. Well – in truth, she got ‘more’ sick. She had been diagnosed with Polycythemia Vera way back in 1975. It is a blood cancer – essentially the reverse of common Leukemia. PCV patients make too many RED blood cells. They suffer from migraines, enlarged livers, and spleens and back then, the first line treatment was to have a phlebotomy (withdrawal of blood) weekly. She was poked and prodded year after year for a long time. Initially, she was given only five years to live. I was a teenager, living 3000 miles away from her when the disease was discovered. Thankfully, it was during her Army days and so she qualified for military medical benefits throughout her lifetime (coincidence??)

Remember, mom left us when I was 12 to join the Army so that she could receive an education that might allow her to support her children as a single mom because she was leaving Dad. Essentially, from the age of 12, I had only lived with her for a year and a half, and all the rest of the time she was thousands of miles away. I missed her terribly. Even though my dad was great, a girl needs her mom. It wasn’t until Rocky left the Navy and we moved to Virginia that I got to know my mom as an adult. It had been almost ten years of a very sporadic relationship – only talking once a week on average as long distance telephone calls were still very expensive and even though I got to see her once per year – our relationship was somewhat superficial at best. I was always afraid that she was going to die before I got to know her well.  When I was acting in high school and asked to cry, I would just think about losing my mother.

The doctors had been able to manage the disease relatively well. In fact, it had gone into remission completely while she was pregnant with the twins but then a few years later – in early 80’s, it came back and she was again relegated to constant phlebotomies, constant fear of blood clotting, and extreme fatigue. She was a candidate for a trial drug back then and was treated at Walter Reed Medical Center with P32 – a radioactive agent that affected the way blood marrow produced red blood cells. It worked. She went into remission again for a few years. My goal in living close when we got the opportunity was to know her – finally share my life with her. I am glad we made that choice as she was a rock for me when Rocky died and I was able to experience some of the ‘emotional care’ that had been absent for me as a teen.

We had grown extremely close. She loved Francis as if he had been her son. I often think about the narrow gap of just 20 years between us and recall how she was at my age. The twins were only seven years older than Francis so it was as if we were raising our children together – and yet she was my mom too. We were different in a lot of ways. She was always telling me to lower my voice… “I’m right here” she would say. I was taught to project my voice as a stage actor and mom was always telling me to soften it.  I sometimes hear her say it today as I get passionate and loud. She was a ‘look past the garbage’ kind of gal and I am a ‘throw that shit out’ kind of woman. She was a ‘just do it’ lady and I always asked ‘why’ before I could start. She taught me what it meant to ‘have someone’s back’. She was a great friend to me.

We got used to her disease. She stayed in ‘maintenance’ mode for so long that we often forgot she had something wrong with her. She received a second round of P32 in the early 1990’s and again, it worked. Other than fatigue and a calendar full of doctor’s appointments, she led a normal life. She loved playing bridge and crafting. She was good at a lot of things and then there were things that completely escaped her. She was so directionally challenged that she would get lost coming home from the grocery store. GPS systems came out entirely too late to save her. We forgot that she might die from her disease.

In early 2001 she was sick again and the VA determined that she had developed Myelofibrosis (a bone marrow cancer) secondary to the PCV.  It was apparently expected at some point – a natural progression of the disease – but people failed to prepare us for the reality of that promise. The VA essentially sent her home to die stating that there was nothing more they could offer her. I wasn’t having it. The internet came to my rescue and as I honed my research skills, I decided it was a good idea for her to return to Walter Reed Medical Center where she had been used as a Guinea Pig to see what new treatments they may be in a position to offer. I lived much closer to the DC area so mom and my step-dad came to stay with us for a few days.

I will admit to feeling a bit entitled and behaving in a brash manner but I lied and told my parents I had gotten an appointment. In fact, we didn’t have an appointment but simply presented ourselves to the Hematology department as if we did and asked to see a doctor. I explained that she was one of the original P32 patients – still living – and needing follow-up care. My step-father – an Army lifer – was pretty mad at me and extremely embarrassed but, we got an appointment with one of their Hematologists the next day, which was good because I wasn’t leaving without one – I was definitely feeling confident. The doctor who began to care for her was an angel. She tolerated me with respect and treated mom with incredible care. She was completely and totally committed to finding solutions to mom’s health challenges.

I found some active research at the Mayo Clinic and presented it to the doctor who accepted it with pleasure. Indeed, she contacted the researching physician and was able to enroll mom in that trial via WRMC. It was a win all around! The best part was that mom had to come to stay with us for a week each month. After a few months of traveling and receiving medical care, it was apparent that it would be in their best interest to relocate. I couldn’t be happier! I was going to be able to share my life with mom; share my children. I was elated that my family could come to know the lady that I so dearly loved. I couldn’t have been more enthused to having her close by – all the time. I found a great rental for them within a few miles of our house and we moved them in before the end of the year.

Once again mom was getting a new lease on life and I would get to share it with her.