I have to say this has been the saddest three weeks of my life.
I have been very lucky. Three of my grandparents died when I was relatively young. Young enough that I was too self involved to really pay attention.
I was lucky enough to have my wonderful grandmother for 100 years. She died on Christmas day 2009. We had a wonderful family celebration of her 100th birthday in August, everyone turned out for it. It was very special, a special time for a special lady.
Three weeks ago my mother was diagnosed with Stage III multiple myeloma. This is a leukemia that affects the bones. It is a disease that is diagnosed in it’s infancy. It sits in the body and smolders for years, and nothing happens. No drugs are needed, no treatment, just monitoring of blood levels every three to six months.
My mother was diagnosed with MM 7 years ago. We all panicked, but quickly found out that MM can smolder for years before it becomes full blown.
It became full blown three weeks ago. My mother was hospitalized, numerous tests were done, and the diagnosis came back, the smoldering had ended, we were in full blown disease. The oncologist reassured us that this is highly treatable with very aggressive, very sophisticated chemotherapy drugs.
I came back to Virginia to get the cure going. Booked planning meetings with oncology and began the first round of chemotherapy on August 13th. As we sat in the planning meeting, my mother and I, my brother on speaker, I noticed the look on my mothers face. She had completely shut down, she wasn’t in the room, she wasn’t listening, she wasn’t interested. She told the nurse practitioner she wasn’t interested, she didn’t want this, she didn’t want to try, she was too tired, it was all to much. We didn’t listen, we had our agenda.
We got out the rally bats, my brother and I. Mom, there is remission, limited side effects, easy plan to follow! Let’s try it, let’s commit to one cycle, see how it goes, see how you feel!
Begrudgingly, she agreed.
The first round began on August 13th. It involved pills, injections, and blood work. I spent my time making medication lists, chemotherapy schedules, injection times, medication times. Document after amended document. Trips to the pharmacy, trips to the cancer center for treatment, Google calendar links to everyone. A lot of planning and doing.
Through out it all, my mother seemed to get smaller and smaller. She became less than what she was, she disengaged, she didn’t read any of the literature, she payed no attention to my well thought out schedules, she was confused, started having side effects immediately, and was tired, just so, so tired.
Throughout it all, I was the upbeat cheerleader. I kept trying to get her involved. Ikept putting my lists and schedules under her nose. Nothing, nada, no interest.
She mentioned taking her life during one treatment. An antidepressant was immediately added to the medications list. On we pressed, another injection, more pills, more lists, more driving.
Endless activity until last Friday night, when I finally put my agenda to the side, and took a good honest look, and finally heard what my mother had to say. She didn’t want any of this. She was tired. She didn’t want the crappy quantity of life that chemotherapy was going to give her, she wanted what time was left for quality of life, her version of the quality of her life. Not what I was selling.
I listened when she told me she was done with chemotherapy. I took a deep breath, and said the one thing that I never thought I would have to say to either of my parents, it is okay, you can let go. You can do it your way. No more treatment, you don’t have to. And no, I don’t think anyone will think you are a quitter. It is your life, do with it what you want, it is your choice. My brothers and I will back you 100%.
In the past three days, I have written and added funeral and cremation instructions to her will, filled out advanced directive forms, and picked out her outfit for cremation. The whole time holding on, not breaking down.
She then got out her jewelry boxes, all of which were to go to me. One was filled with heirloom pieces given to her by her mother and aunt. The others had a lot of costume pieces.
The soul wrenching, gut sobbing tears started when I opened the box of stick pins. Remember stick pins? She used to wear them all the time. I couldn’t get a grip, I was like a little kid again, holding onto my mommy and sobbing. Stick pins in a box, she will never wear them again. Oh my god, my mother is preparing to die.
This was a pain like I have never felt before. This was not the plan, the plan was for her to get better. The plan was life was to go back to normal. Too bad that was my plan, and I forgot to check with her, because it certainly was not her plan.
My plan involved closure, telling her how much she had hurt me, airing all my resentments, letting her know how messed up our relationship had always been. Hugs and kisses and starting anew.
As I sat looking at that box of stick pins, I let it all go. Life changes in the blink of an eye, what was so important to me for so long, what has festered in every encounter we had, has no meaning now. I can’t waste any more time.
I am making the most of these last few days we have together.
This weekend we are moving her to assisted living in St Louis to be near my brother and his family.
If we are lucky we will get a year.
No more wasted emotions on past resentments, we no longer have the time.
Look around me, I can see my life before me
Running rings around the way it used to be
I am older now I have more than what I wanted
But I wish that I had started long before I did
Crosby Stills Nash – Wasted On The Way Lyrics