Margaret, Chronic Lymphocytic Leukemia Survivor

My name is Margaret, and I have cancer. But I am not cancer.

How many times in twenty years have I said that to someone?

In 2001, at age 54, I noticed lymph nodes in my groin that my doctor confirmed were enlarged and suggested that I see an oncologist. A biopsy was ordered and revealed I had non-Hodgkin Lymphoma. I was fortunate that this oncologist was my friend – I trusted him. It was he who performed the biopsy and confirmed my diagnosis – specifically that I had small, B-cell, Diffuse, non-Hodgkin Lymphoma, Stage 4, SLL/CLL, Small Lymphomatic Lymphoma/Chronic Lymphocytic Leukemia.

Wow! As I bent over with the shock of it, my husband Richard beside me, I sat up and said.” Well, I guess this is a wake up call.”

On the way home, Richard said to me, “Well, Margaret, none of us is going to live forever.” To which I said, “Well, Richard, thanks a hell of lot!” In reality, Richard was grounding. He was with me 100 percent, and that made all the difference in the world. We had four children, two away and two at home. I said that I would tell each one of them. I wanted to be strong for them. Now, I want to be real.

Michael, my oncologist, said that some doctors would start chemo, but since I had no other symptoms, I could also consider “watch and wait” – and that is what I did for 7 years. When I would go in for labs, Dr. Michael would tell me, “I’ll tell you when to worry.” “Good”, I’d say, “because I’m going to live my life.”

At that time, Michael introduced me to the Lymphoma Research Foundation (LRF). LRF has been my go to for twenty years. I’m still listening and learning more and praying that researchers are working 24/7.

Through the years, I have gone for labs on a regular basis, then more frequently, as my numbers showed that changes were occurring. Eventually treatment was recommended. Although I continued to feel well, the numbers showed otherwise. Ahead, there would be days of not feeling well and depending on the goodness of others.

Family and friend support is so important. So is knowing, or learning, how to respond to the many ways that people try to be sympathetic or helpful. Being very independent and feeling well, it became difficult to have someone ask, “How are you doing?” with a long face and morose tone. Once when asked this, and responding that I felt great, my friend said, “But you have cancer!” And this is when I said, “I may have cancer, I‘m not cancer. Just ask me what I’ve been up to.”

A chaplain who worked in the oncology office offered me this advice. “Margaret, people don’t know what to say. But you have an opportunity to teach them. Just do it kindly.” I’ve never forgotten that.

In 2003, my Richard learned that a previous melanoma had metastasized to his lungs. Through his own rough treatments, he never gave up. In fact, when I had brought in a Lymphomathon to Augusta, Richard walked the entire route wearing a morhphine pump. Once again, I knew the reality of his disease, but I was never without hope. That was November 2005, and he died December 30, 2005.

So, you can probably imagine that faith is what sees me through all things. For my first PET scan, I had a mantra that I still use today- God heal me, Jesus hold me, Spirit strengthen me. I’m a realist. I get the big picture of my disease. But my cup is 1/2 full. I am never without joy. And hope, yes.

When you have chemo or any supportive treatment, much time is spent in treatment rooms. These are days that I will never forget. Nurses who knew their jobs and performed them with their hearts. Who grew to know me and all of the other patients. We patients formed a bond. We were all in the same club. We laughed a lot, hugged each other, sharing the ups and downs. My phone has names and info on every patient that I met. So many of us keep in touch, still interested, still offering support and care. For me, that was a strong positive on treatment days.

And the family and friends who would drive me to treatments, be second ears in the exam room and stay through infusions, didn’t have to be asked. There was a lot of love in that room. As the Benadryl crept in, I would say, “Make sure I’m still breathing!”

I have lots of things that I tell every new patient. ”Never come to onco looking like a victim.” “You better slap on your ATTITUDE before you walk in.” And of course, to get that small notebook for questions, concerns, refills needed, etc. I keep a copy of my recent labs in my handbag, just in case. Additionally, and because of the COVID situation, I have made a folder with all of my medical info which I put in the car when I go out.

There is so much to learn in life. I learned that people are overflowing with kindness and care, manifested in a myriad of ways.

There is not a day that goes by that I am not aware that I have cancer. In fact, I often remind my doctors, when asking about something unusual, that I also have CPS. What is that, they ask. You know, ‘Chronic Patient Syndrome’. Because any unusual thing is suspect.

Through these twenty years I have weathered the storms of many different treatments, (Fludarine/Rituxin, Treanda, Campath, Rituxin, Imbruvica, Treanda/Rituxin, Zydelig/Rituxin, Venclexta) side effects, three cases of shingles, those squamous cell carcinomas that like CLL patients, cellulitis, atypical TB, and a subarachnoid
hemmorage. Hospitals refer to that as a STROKE. Yikes!

Did I mention the stints in the hospital, a year of weekly wound care visits from the cellulitis, and the two week stay when my weight dropped to 89 pounds. Yes there are side effects to treatments. But, and this is important, THERE ARE TREATMENTS!

And I am living my life. I have traveled, carrying prescriptions with me, met people all around the world, labs in Italy, and Zarxio injections on hand, am a cook, gardener, farmer at heart, dog lover, and I’m Grammy to four grandchildren. My primary role is that I AM MY OWN BEST ADVOCATE!

I have been in remissions, come out and gone to new treatments. I’m currently on Venclexta daily. And though it’s effectiveness is changing, this time of COVID has doctors reluctant to change protocols. So far I am managing. I continue working my garden daily, walking, and trying to fit in my yoga. I love Instagram and have had many incarnations which have amused, informed, and, hopefully, uplifted. Now I do a ‘Morning’ email. Did I say I am a people person?!

Since my Moderna vaccines did not mount a response for me, as I had been advised they might not, I’ve been living ‘The Bubble Life’ with my dog, Dolcina, since March 6, 2020. Though she is not kitchen savvy, we’ve baked dozens of pound cakes, cookies, and cornbread and packed up our garden produce. Since we can’t visit the sick, bereaved, or friends, we deliver.

As this is written, the Delta variant is ferocious, making it scary to go to appointments, medical, dental, visual, as my community is not well compliant with CDC or other science based recommendations to ensure safety. Going to the grocery store has, per doc advice, been forfeited for me. Having cancer is scary, more so in this time of COVID.

Just receiving the results of my ‘Booster’, a third Moderna, I learned that my

response was better, but that I am still not fully protected. Still, I am hopeful and a realist. I’m a glass half full person. There are
many things that I cannot change. But, I can make choices. I choose to be joyful. I choose to be real. And I choose to use my voice in any way that might make a positive difference.

My name is Margaret. I am a survivor.