“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.