Sunday, May 11, 2014 is Mother’s Day and people all over the world will be honoring their Moms — the amazing beings who brought them into this world, a miracle in itself.
This year I want to draw special attention and thanks to my incredible Mom, Mary Lou Perry, who has been a role model, source of encouragement, and support system for me for my entire life. Over these past eight months, since I was diagnosed with acute myeloid leukemia, my Mom has reached “super Mom status” in my eyes and heart for all of the tremendous care she has been providing to me as my primary caregiver while I heal from this intense blood cancer. She is always here for me.
My Mom turns 70 this month, but you wouldn’t know it from how she looks and the energy she sustains. Everyone is so surprised and says, “I thought she was about 55!” All I can say is, I hope it’s hereditary…
From the time I was a little girl growing up in New Jersey, my Mom was a big role model and teacher for me. She taught me to read and do math before I started kindergarten, and when my parents divorced when I was five in the mid-70’s, she went back to work full time at a professional job and became one of the first people to work with computers. She was a word processing manager in a large company, coordinating proposal preparation and the design and formatting of customer presentations. This was before the time of personal computers at each desk, so centralized groups were needed to create the documents. I would visit her at work and marvel at the huge computers and how important and pretty my Mom looked running the operation. I wanted to be smart and independent like her when I grew up. She worked full time in communications, graphics, and marketing until just four years ago when she retired and moved into a lovely senior community in Pennsylvania.
From the time I was nine, I had California on my mind and I told my Mom at that young age that I would be moving there when I grew up. True to my word, I left for California in 1992 after graduating from college with a B.S. in Environmental Science and Resource Management. I headed to the west coast to become “an environmentalist” with aspirations of working with others to “save the world.” While this type of non-profit career was not the “traditional” upbringing that I was “groomed for” (most of my classmates went to work in big companies in places like New York City and Philadelphia) my Mom was supportive of my idealist views and deep intent to follow my dreams. I always came back to visit the east coast – at first about once a year, but after I started Safe Routes to School and began doing regular business trips to Washington DC (around the year 2000), I was able to see my Mom, my sister Chris (and her two kids) about 3-4 times/year – they were all living near Philadelphia, a short train ride from the nation’s capital.
In fact, I was visiting my Mom, sister, and my Dad (who also lives in Pennsylvania with his wife Elly) the last weekend in September of 2013 and I was feeling full of energy, with no sign of being sick. Who would have known that the very next week in Washington DC I would start to feel my first symptoms of leukemia, and that on October 17 I would be diagnosed with AML and told that I had to start chemo immediately to save my life? Life has its surprises.
It was very emotional for me to call my Mom on October 17 and tell her that I had a life threatening disease. We cried, and reassured each other that I would make it through. My Mom said that she would soon be on a flight out to California to be with me while I was living at Kaiser Permanente and going through chemotherapy. My Mom flew out a couple of days later, and visited me every day at the hospital. She was my chief supporter to get me on daily walks on the hospital floor, 5E. It turns out that I needed three rounds of chemo and recovery at Kaiser, each one lasting 4-6 weeks (with 1-2 week breaks at home in between); my Mom faithfully flew out each time to be my side and she wouldn’t leave until she was sure I was OK. She was particularly supportive when I was in the ICU with a high fever, pneumonia, and infection. Just knowing that she was there helped me to get through that really rough time.
Because the leukemia did not go away after my first chemo induction, I was told that I needed to have a bone marrow transplant (BMT) at Stanford University to have a chance at surviving. To have a BMT at Stanford, it’s required that the patient have a “primary caregiver” who takes care of the patient 24/7 for the first 100 days following the BMT after being discharged from the hospital. This is critical as patients are very weak and susceptible to disease after a BMT, and need someone who essentially serves like a full time nurse/caregiver. Without a second thought, my Mom volunteered to be my primary caregiver, and moved out to California for four more months.
Each morning while I was at the hospital at Stanford a team of doctors would come to my room at 8 AM to assess my condition. My Mom would get up early, walk to the hospital from the apartment where she was staying, and join me for the meeting to take notes and ask questions. Afterwards she would do internet research to plan for questions for the next day, and to write the extremely informative “health updates” for this blog. Many have commented that she is a true “scientific writer” and I agree! When we launched the blog my Mom wrote an “About AML” page and my Stanford doctor, Robert Lowsky offered to review it for accuracy. He was impressed that it was completely accurate. That’s my Mom – smart, detailed, accurate and thorough.
After I was discharged from Stanford on April 8, but required to live nearby (for 100 days), my Mom started taking care of me full time. Let me make it clear, that this is a lot of work, especially when I was first discharged and was very weak. Here are some of the things she does every day to take care of me because I am not allowed (or simply cannot) do these things myself: My Mom:
- Drives me and stays with me at the infusion treatment area (ITA) hospital appointments which are twice a week and last about 4 hours round trip.
- Takes notes at the hospital appointments and keeps track of all of our questions, researching questions before we get there to have intelligent discussions with the nurses.
- Manages when and how much I need to take of all of my medications (which is about 10 drugs right now at about six different times throughout the day) – it’s complicated and changing all the time!
- Fills my prescriptions for medications at Kaiser Permanente, a journey which is sometimes long depending on how busy the pharmacy is.
- Flushes my catheter (the port in my chest) every day with Heparin, changes the valves on the ports twice a week, and changes the dressing every week – these procedures are complicated and took a special class and training– nurses do this work in the hospital.
- Shops and cooks for me! This has been a learning experience for her as I am vegan, gluten-free, and eat all organic and non-GMO. My Mom has figured out all the right things to buy and she has actually become an accomplished vegan chef! She makes some awesome tofu and soups.
- Cleans up around the house. We’ve hired cleaners to do the heavy duty work once a week, but there is a never-ending stream of dishes and laundry and straightening up to do.
- Is my constant companion – I am basically living in isolation, with only a few visitors, so we spend a lot of time together.
My Mom does all of this with a smile and an amazingly positive attitude. As my energy is starting to return I try to help where I can – such as a little cooking, loading my dishes in the dishwasher, and managing some of my medications, but I truly don’t know what I’d do without my Mom.
Each night at dusk my Mom and I take a walk in the neighborhood. It started out being for only 10 minutes (that was as long as I could stand), but we’ve gradually built up to about 40 minutes of walking. But this is not the only time my Mom walks. While I’m napping in the afternoon, she goes on adventures throughout Stanford on foot, usually walking an additional five miles a day and coming back with tales of sites, museums, restaurants and other interesting encounters she has seen and experienced. She’s making the most of her time here in California.
After the walk, we usually watch a movie before bed. We were on a string of romantic comedies, but are starting to branch out into musical biographies and historical fiction (I can’t stand violence, so we’re a bit limited).
All in all, I am beyond words for how grateful I am for the incredible love and support of my Mom, Mary Lou Perry. Some people talk about being “done” parenting at 18. Well, I’m 44 and my Mom is still taking care of me, and for this I will always be eternally grateful. She is definitely nursing me back to health.
Since I moved away from home at the age of 23, this process of healing from AML has been a wonderful opportunity to get to know my amazing Mom better and to get closer with each other. And even today, she’s still serving as a role model for me.
I love you Mom! Happy Mother’s Day!