It was the mid 1990s. I was in my late forties living in the Boston area. I often felt flu-like but it was never a full- blown case.
I’d say to my husband, “It’d be better if one day I got the flu, let it run its course and get back to full speed”. But that did not happen. I kept working and was fully invested in my family’s needs on less than a full tank of gas.
At visits with my wise PCP, I explained the on/off symptoms. Due to some elevated blood counts, he referred me to an remarkable oncologist (who I still see) from Mass General West Cancer Center. Together, they kept a careful eye on my IgM. This “watch and wait period” lasted for 14 years.
In 2010, as my IgM was peaking. I needed a bone marrow biopsy. The test confirmed I had Waldenström macroglobulinemia (WM), a treatable but not curable type of non-Hodgkin's lymphoma. That oncologist referred me for a consult with the guru of Waldenstrom’s at the Dana Farber Cancer Institute in Boston, MA.
The two oncologists established it was time to treat me. They mutually agreed on “my recipe” of Cytoxan, Dexamethasone, Rituximab (CDR). In the comforts of my first oncologist’s office I had 6 rounds of CDR every 3 weeks followed by 1.5 years of Rituximab for maintenance.
Quickly, I figured out my new world of individualized treatments given in an infusion center. There, I shared the same fight with other patients to beat the cancer cells that wreaked havoc within all of us. Treatments became my priority. With limited energy, other things lost importance for the time being.
I told companion patients to keep reminding themselves that it takes a lot of patience to be a cancer patient. I encouraged them to use The Leukemia & Lymphoma Soceity (LLS) now Blood Cancer United as an invaluable resource for themselves and their families.
Over these years, I was on a continuous roller coaster ride. One day I felt good; other days were far from good. I had my own counting game. For the first time in my life, I looked forward to being at “zero” - meaning no more planned treatments on my calendar. When my counts were going in the right direction, the off days got easier to tolerate. As I set my own goals to get through the process, fortunately, the recipe my two oncologists laid out met their goals too.
Was this easy? No. Is it hard to live with knowing Waldenstrom’s is not curable? Yes! But the sharp knowledge and incredible cheerleading squad of my oncologists and their staff have always been behind me. They addressed my symptoms (i.e. night sweats, an intolerance for foods I previously enjoyed, total exhaustion). That loss of being my old, productive, highly energized self was the hardest. From their explanations and ongoing encouragement, I anticipated as they did too, this challenging phase would lower my IgM levels and yield improved health. Many days that seemed impossible. Yet, in due time the tough ride was behind me.
By the end of 2012, my Waldenstrom’s was “under control” (my two new favorite words). My tank of gas was replenished. With renewed energy, I put my “patient mode” and the WM disease on the back burner.
Sometimes you must tell yourself to push through to see the brighter side while asking yourself a few questions:
How could I do that?
By being forever grateful to the brilliance of researchers who change outcomes for cancer patients. They gave me hope. From my first diagnosis to this day, I am reminded of their untiring, united efforts to find new ways to cure cancer patients and to advance knowledge of the disease.
What tangible item can I hold onto in this journey?
I found it helpful to have some personalized habits going through this long, dark tunnel. Since 2010, to every doctor appointment, I bring a purple (my favorite color) stone necklace my daughter gave me for good luck when I started my first treatment. It is my personal reminder to think positively and welcome everyone’s support.
Things I learned:
First, to give into the need to rest. This was not a form of giving up. Instead, I was armoring my body with strength to face my cancer. Somedays I had to say “no” which is a word I rarely use. I gave myself a pass to do so.
What word(s) are helpful to repeat:
“Believe” and “Hope” worked for me.
For 7 years, I felt good and lively. My blood counts and the WM remained stable without any treatments. My oncology visits were now spread out from 3-6 months apart. I was uplifted by the outcome of my CDR regime. I welcomed long stretches between checkups.
Then in 2019 after a routine blood work for an annual exam with my PCP, I was informed my counts were off including a high WBC despite feeling fine. First, I thought my Waldenstrom’s was acting up and missed getting attention. I was no longer living in the Boston area. However, I quickly returned to Dana Farber and found out that in addition to the Waldenstrom’s, I had chronic myeloid leukemia (CML). This was my second treatable but not curable cancer. Luckily, at that time my Waldenström’s was still behaving.
For the CML, a wonderful leukemia oncologist became the newest cheerleader in my cancer journey. I had to breathe deeply, wrap another seat belt tightly around my brain and body because there was a second roller coaster waiting for me to get onboard. I got back into the “patient mindset”. Again, it was time to wear the “I will get through this one too” hat.
It had been nine years since my first chemo treatment. My oncologists consulted on all treatment options that would not interfere with one another. For the CML, I started on Sprycel, a tyrosine kinase inhibitor (TKI). I was thankful for the convenience of swallowing pills at home. Fighting my bad cancer cells was easier in this mode and a blessing.
Over the years, there have been changes in the management for both my WM and CML. Some have caused issues. My slogan is: “The cure is the next cause”. Realistically, few cancer patients escape side effects. While persevering through difficult events, I’ve held onto believing that my cancer cannot take away my courage and strength. Thankfully, there are alternatives on the horizon. This continues to give me, and I trust other cancer patients too, the optimism we must hold onto.
I’ve frequently been asked how do you deal with having two cancers? The answer is simple. It would be the same if I had only one cancer. That being, “I’m fortunate to have a very caring, supportive family. Also, my outstanding three oncologists and their staff are the fuel that keeps me going.” At each office visit or communication, I am reminded of their compassion, their missions and recognize they have my/all cancer patients’ best interests at the core of their work.
Additionally, Blood Cancer United makes it easier to navigate leukemia or lymphoma if it lands in your lap. Attending their events in person or virtually is inspiring. Their speakers and small group discussions reinforce the fact you are not alone. Learning from their new studies and their reference booklets is so beneficial.
Some people choose to attend cancer support groups. Others prefer to pass. As Blood Cancer United reminds patients, I agree it’s best to pick whatever works for you. Like I did for myself, may others find their own comfort spot to reduce as much stress as possible.
For almost 30 years, cancer has been attached to my name. Now, I take my pills and go about each day as if I am bigger (despite being a small person) than the cancers in my body. With two unrelated kinds of blood cancers, I pray twice as much that more choices become available to hold my WM and CML “under control”.
Currently, my meds keep me stabilized. But I BELIEVE it is “HOPE” that is my very best medicine. My cancers are not disappearing. So, the key for me is to retain an unlimited amount of self-prescribed HOPE. It’s the one part of a cancer treatment not governed by insurance. HOPE is the one “medicine” you cannot take too much of. HOPE gives me security on this roller coaster ride of standing up to my two cancers.
Fredda
Waldenström macroglobulinemia (WM) and chronic myeloid leukemia (CML)
