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A Profile of Hope: Midge’s Story
 
In Midge’s own words . . .

After a year of hot sweats, urinary tract sensitivity with no infection evident, up and down blood levels, a bone marrow test and lots of doctor’s visits, I find myself, after midnight, in the Emergency Room (ER) with what I think is a urinary tract infection and feeling like I have the flu. The attending doctor conducts tests examines me and noting that my spleen is quite enlarged, orders an ultrasound. I lie in this cubicle for what seems like hours until the curtain parts and the ER doctor tells me, based on the preliminary results of his tests, that he has requested the oncologist on duty join him in evaluating the findings. A small man in a white coat comes through the curtain, sits next to my gurney, and tells me they believe I have cancer.

I was sure they had it wrong. I wondered if, because I was 58, might the sweats be symptoms of menopause? And, as I had just returned from India, did I have Hepatitis? And didn’t the doctor want to offer a “wait and see” diagnosis due to the inconclusive bone marrow and blood tests?

I left the ER with an appointment for a CT scan, a double bone marrow test, and a visit with an oncologist at a neighboring hospital. The CT scan is easy. However, although my first bone marrow procedure had been easy, this one proves to be a nightmare. The oncologist has a teaching fellow with him who will perform the bone marrow test. I am numbed at the site, and again before each of three unsuccessful tries. He apologizes and promises it will be over soon. It is, but I have to lay on the table for an hour until my tongue and equilibrium return to normal.

When the results arrive the diagnosis is Stage IV Splenic Marginal Zone Indolent non-Hodgkin lymphoma, explaining my exhaustion. The disease is inhibiting my body from making red blood cells. Cancer. I know now these last months have only been a preamble to what lies ahead.

The oncologist tells me my lymphoma is chronic, it cannot be cured, but most people die from old age and not the disease. The tension in my body has been holding me together and now, with this good news, I go weak with relief. His explains his treatment plan is aggressive: a chemo cocktail and prednisone. He tells of all the side effects. “Any questions?” he asks. 

Because of the bone marrow incident and the aggressive treatment offered, I tell him I want a second opinion and I asked him for all my films and test results to accompany me. I needed to go this far with this doctor as he has all the “evidence” but I know I will never be his patient. The oncologist offers to get me an appointment with his mentor, at an adult oncology outpatient unit, two hours away from my home in Rhode Island, and the difference between the minors and the majors, the Pawsox and the Red Sox!

As I wait for the day for my appointment, my mood swings between anger at my body for betraying me, and the panic that comes knowing I am now totally out of control of my body and of my future.

The following week, accompanied by my son and companion, we arrive at the cancer center. The doctor greets us warmly, takes time to review everything, and when done turns to us saying he understands the reasoning behind the prescribed protocol but thinks a less aggressive protocol is warranted. “We can,” he says, “always use the big guns if necessary.” An intense question and answer period follows, and when it ends I ask him to take me on as a patient. He agrees. I take a huge breath knowing I have found the right doctor for me. I am feeling more upbeat, more determined that cancer not define my life.

From my initial visit, throughout the treatments and beyond, the doctor is accessible, always responding to my anxieties with thoughtful and professional attention.

Treatment begins with a two month attempt to build me up with large doses of iron, before starting chemo: this does nothing except aggravate my hemorrhoids. I also was increasingly breathless when walking even short distances. I am told my body is not producing new red blood cells. It is decided chemotherapy will begin immediately. I will take Leukeran (chlorambucil), orally, 12 pills each of the first four days of the month, for the next six months. Anti -nausea medicine is offered. During the entire treatment I have only one bad day.

My chemo is accompanied by monthly red cell plasma infusions. The body normally restores red blood cells every 35-40 days. Mine has stopped making blood cells. Usually by week three, my hematocrit drops from the normal of 38, down as low as 10.

Six months later the chemo is done but the infusions continue until, within the year, my body starts to make red blood cells. As I become symptom-free, visits go from monthly, to every three, then six months, then yearly, and now, almost 14 years later, not at all.

And what have I learned? When something seems amiss with my health, I don’t wonder, I ask and keep asking, because no one knows my body better than me. Then, I always get at least one second opinion before I do anything if it requires chemical or surgical procedures. At those times, I take someone with me to all appointments with a list of questions. Also, I am not afraid to ‘bother’ the doctor. I call when things aren’t going right. Treatment weakens the immune system. Infections come easily. My illness forced me to find a new family practitioner who is my ongoing partner in ensuring my wellbeing.

Lymphoma was an uninvited guest whose gift was learning - although life is finite, live it in infinite ways; set aside time each day to do something I love; surround myself with people I love, and be more forgiving, of myself, and others.

I am now 70 years old and teach opera, history and literature at three different institution’s Life Long Learning programs. I love theater, travel and enjoy outdoor activities in all kinds of weather. I also offer myself as a volunteer for the LRF’s Lymphoma Support Network.

After 14 years of remission, I am a survivor. However, a friend corrected me, "No, my dear, you are more, much more, than a survivor - you are a thriver." And I am.