It was the mid-1990s, I was in my late 40s, and I often felt flu-like symptoms, but it was never a full-blown case. I’d say to family and friends that it’d be better if I were to get the flu one day, 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 and their needs on less than a full tank of gas.
My wise primary care physician saw some elevated blood counts and referred me to an amazing oncologist who kept a careful eye on my IgM. This “watch and wait phase” lasted for 14 years.
After the IgM kept rising, it was apparent I had Waldenström macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL). The oncologist referred me for a consult with the guru of WM at the Dana-Farber Cancer Institute in Boston, Massachusetts, near where I lived. In 2010, the two oncologists confirmed it was time to treat me and mutually agreed on “my recipe” of CDR (Cytoxan, dexamethasone, rituximab). I had six rounds of CDR every three weeks followed by 1½ years of rituximab for maintenance.
I quickly figured out my new world of cancer. It was composed of individualized treatments given in an infusion room. There, along with other patients, I shared the same fight to beat the cancer cells that wreaked havoc within all of us. I had no choice but to let cancer treatments be my priority. With little energy, other things lost importance for the time being
Throughout my treatment, I felt as if I were on a continuous roller coaster ride. One day it was smoother than others, and I felt good; other days I felt far from good. I began 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 “not so good” days got easier to tolerate. As I set my own goals to get through the process, fortunately, the recipe my oncologists laid out met their goals too.
Was this easy? No. Was it hard to bear the fact that WM is not curable? Yes. But the most helpful key to dealing with this challenging reality was having the sharp knowledge and incredible cheerleading squad of my oncologists and their staff. They all understood. They addressed my symptoms of night sweats, foods that might not agree with me, or no longer tasted the same while undergoing treatments, and warned how to deal with total exhaustion and not being able to go at the same steady pace I kept for decades. That loss of being my old self was the hardest. From their explanations and ongoing encouragement, I knew and they knew, too, this phase would hopefully pass with decreased IgM levels and improved health. Some days seemed impossible. I kept looking for extra rays of sunshine while hearing in the back of my mind my doctors’ messages. And, sure enough, in due time, the tough ride was behind me.
By the end of 2012, my WM was “under control.” My two new favorite words were “under control.” My full tank of gas was replenished. With renewed energy, my patient mode became secondary. Of course, I had an underlying concern of living with WM, but with each new day, bigger and better things took precedent over Waldenström’s.
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 were the source of my hope. From my first diagnosis to this day, I am reminded of their untiring efforts to find new ways to cure all cancer patients.
What tangible item can I hold onto now?
I found it helpful to have some personalized habits going through a long, dark tunnel. Since 2010, to every doctor appointment, I bring a purple stone necklace my daughter gave me for good luck when I had my first treatment. It is my personal reminder to think positively, be hopeful, and to welcome everyone’s support.
So, I say to fellow cancer patients, may you too find a little something to hold onto as you remind yourself of the loved ones who are by your side. They get your “not so good days” as they cheer you on from either nearby or afar. I discovered that, unlike my normal lifestyle, I learned to give in to the need to rest. In doing so, I recognized this was not a form of giving up. Instead, I was armoring my body with strength to stand up to my cancer. Some days I had to say “no,” which is a word I rarely used. I gave myself a pass to do so.
What word(s) are helpful to repeat:
“Believe” and “hope” worked for me.
For seven years, I felt good and lively. My blood counts and the WM remained stable without any treatments. My oncology visits ranged from three to six months apart. I couldn’t have asked for a better outcome post the CDR regime for WM. I welcomed long stretches between checkups.
Then in 2019, after routine bloodwork for an annual exam with my PCP, I was informed my counts were off, including a high WBC. First, I thought my WM was acting up and missed getting attention. I was no longer living in the Boston area, but immediately flew up to Dana Farber to find out that in addition to the WM, I now had chronic myeloid leukemia (CML). This was my second non-curable but treatable cancer. Fortunately, at that time, my WM was still behaving itself.
For the CML, a leukemia oncologist became the newest cheerleader in my cancer journey. I had to breathe deeply, wrap another seat belt around me, because there was a second roller coaster waiting for me to get on board. I got back into the patient mindset. It was time to wear the “I will get through this one, too” hat.
It had been nine years since my first chemo treatment. Many more options were available. For the CML, I began on Sprycel®, a tyrosine kinase inhibitor (TKI). I was thankful for the convenience of swallowing pills at home. Being able to fight the bad cancer cells in this format was a relief and a blessing. I’d look at those pills each morning and say, “I’m doing my work to try and stay healthy. You do your job and fight away!”
As the years have rolled along, there have been changes in my treatment plans for both the WM and CML. I feel fortunate that there are alternatives and new meds always on the horizon. This continues to give me, and I trust other cancer patients, the optimism we must hold onto.
I’ve often been asked, “How do you deal with having two cancers?” The answer is simple. It would be the very same if I had only one cancer. That being said, I’m fortunate to have an amazing team of three oncologists who have continued to support me/my family. My doctors and their staff are the fuel that keeps me going and my guiding stars. I am constantly reminded of their compassion, their mission, and know they have my/all cancer patients’ best interests at the core of their work.
It’s been almost 30 years since cancer has been attached to my name. I take my morning pills for it and then go about each day as if I am bigger (despite being a small person) than the cancers in my body. To my fellow cancer survivors, play each day by ear. May you also have the strength to do the same and be blessed with a strong medical team behind you.
Plus, it is organizations like Blood Cancer United (formerly LLS) that inspire patients. Their work is a constant reminder that you are not fighting alone. Blood Cancer United makes it easier to stand up to leukemia or lymphoma if it lands in your lap.
I’d share with other cancer patients in the infusion room and elsewhere to stay organized. Remember, every question is important to ask. None should go unanswered. To use Blood Cancer United as a resource. The organization is invaluable to both the patient and the caregiver/family.
I found it immensely helpful to attend a Blood Cancer United event in person or virtually. The speakers and small group discussions reinforce your understanding of the cancer you are facing. You’ll learn from the questions asked. These meetings highlight the fact that you are not alone, and they are very informative. Blood Cancer United relays findings from studies underway or completed, their reference booklets are so insightful, and their multiple ways to offer patients support is first-rate. Some people choose to attend support groups. Others prefer to refrain from such. When going through cancer treatments, Blood Cancer United always reminds the patient that the way to go about their fight against cancer is the one that works best for them. May others find a comfort spot in doing so as I did.
Yes, and thankfully so, cancer is always being researched. Having two kinds of blood cancers that are not connected, I can only trust that more possibilities to keep my WM and CML “under control” happen. With extreme appreciation, my meds keep me in check. But in truth, I BELIEVE it is “HOPE” that is my very best medicine. I realize my cancers are not leaving my blood. My only option is to accept my good days as a gift, give in to my off days, and to hold onto an unlimited amount of HOPE. It’s the one “medicine” you cannot take too much of. It keeps me (and I hope others) steady on this roller coaster ride of standing up to cancer.
Fredda
Waldenström macroglobulinemia (WM) and chronic myeloid leukemia (CML)
