Lymphoma: I’m thankful for a ‘new normal’ after my needle in haystack match

Tommy Barkmeyer

Musician Tommy Barkmeyer is finally starting to feel like his “new normal” will be something good.

“The last few years have been mostly horrible, but in some ways my blood cancer experience has left me with a new and improved Tommy Barkmeyer,” the 53-year-old said.

“It may sound strange, but it was worth it to feel the way I do today, even though my new normal is not quite what normal used to be.

“The cancer cells are still floating around in my blood. I’m constantly tired, I still can’t eat as much as I need to, and I still get sick a little too regularly. But living this experience has taught me how I can enjoy the rest of my life, however long that may be.

“My doctor recently told me I could live another 100 years if the cancer stayed at this level. He may have been exaggerating but if he’s half right that’s still pretty good!”

Lymphoma diagnosis

Tommy was diagnosed, by chance, with Waldenstroms Macroglobulanaemia (WM), a rare type of lymphoma, in June 2011 after suffering an epileptic seizure. His GP noticed some abnormal proteins in his blood tests that were confirmed as cancer.

“And so the ride began. I was told I had been diagnosed about 10 to 15 years earlier than most people and my cancer was more aggressive than usual,” he said.

After diagnosis Tommy immediately began what was meant to be six months of chemotherapy. However he only completed four months as the treatment’s side effects made him so ill.

“My body was in such bad shape; my blood counts were down, my weight plummeted to 50kg at its lowest, and my gums were sore and bleeding,” Tommy said.

“I was constantly nauseous, tired and in pain.”

“After a couple of months of trying to put on weight and get a little stronger again, it was decided I would try a different treatment usually used for myeloma: thalidomide.

“It was only a little better than chemotherapy and was given with the hope it would manage my cancer until I could have a bone marrow transplant.”

Bone marrow transplant

Tommy waited more than a year before a suitable donor was found. His brother was not a match and his sister was dealing with her own blood disorder, immune thrombocytopenia. Tommy said although his siblings were unable to be his donor, they have helped him in so many other ways.

“I especially take inspiration from the way my sister has approached her journey with amazing strength and a supremely positive attitude,” he said.

Eventually a woman in Germany was identified as a match, which Tommy said was like finding a “needle in a very large haystack”, especially considering his multi-ethnic background. The bone marrow transplant was Tommy’s last treatment and he has been slowly recovering since.

He describes his recovery as “two steps forward and one step back” but progress all the same.

“The last year has been a little frustrating because I just want to get back to a normal life. I kept hounding my doctor about how long it would take to feel normal again, but all he could tell me was that for some people it took two or more years,” he said.

“Fortunately, I practiced yoga and meditation before I was diagnosed and found it to be a valuable tool in my recovery, physically and mentally. “At my last review the level of cancer in my blood was down to my personal best, although of course I’m aiming for that big fat beautiful zero!”

Tommy believes his return to the gym through the Leukaemia Foundation’s Fit To Thrive exercise program has made a huge difference.

“I’ve since become a bit of a gym junkie and have enjoyed watching that cancer level steadily dropping. “These last few years, although some of the worst times of my life, have left me with the ability to find positives in a bad situation. I love playing music now more than I ever have before.

“My aim is to get rid of this cancer once and for all. I’m working hard to put on weight, get stronger, eat well and build a strong immune system – basically living a healthy life.

“That can’t be a bad thing! If nothing else, it makes me feel good and I’ve really missed that feeling.”

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