September is Blood Cancer Awareness Month.
Leukemia, Lymphoma, Hodgkin’s Disease, and Multiple Myeloma. Do these sound familiar? I am sure the first one and maybe the second one are known to you, but have you heard of Multiple Myeloma before I spoke to you about it? Probably not.
I had never heard of MM when I was diagnosed with it. I was initially diagnosed with a blood disorder called MGUS (Monoclonal Gammopathy of Undetermined Significance). WTF?? I was monitored for a year and my IGG levels slowly, but predictably, (per my excel spreadsheets and graphs), rose to the level of MM. Cancer!! Again, WTF?! I was 50 years old!!
MM is more common in men than women, people over 70, persons of colour, persons who have worked with chemicals for years. Not a 50 year old female paper pusher. Why me? There is no answer to that one. Luck of the draw!!
I finally accepted it and we started the battle. 4 months of induction chemotherapy to reduce the cancer in my bone marrow and blood as low as possible in preparation for harvesting my stem cells. 10 days before harvest a blast of high dose chemo and then 9 days of Neupogen to stimulate blood production. Day 10 was harvest. Hooked up to a centrifuge that removed the plasma cells from my blood as my blood was circulated throughout the day. 12 million stem cells produced and collected!! Enough for 2+ transplants.
They were frozen and a few weeks later I had Melphalan - a deadly chemotherapy drug that eradicates your bone marrow. (Bone marrow generates blood cells.) The next day my thawed stem cells were reintroducted into my bloodstream. It takes about 5 days for the chemo to kill the bone marrow and 10 for the stem cells to recreate your marrow and start making blood again. A very dangerous time. I was also feeling very ill.
100 days later, tests showed that my transplant was a success and my new blood was cancer free. Yay!!! But the battle was not over. I had a choice. Enjoy my life, get back to work and wait to see how long I rode this out before the inevitable relapse. No crystal ball but it was predicted to be about 2 years. The other choice was to start maintenance chemotherapy. A low dose chemo drug (pill) taken every day to keep the cancer at bay for a longer time. Predicted to be 5 years. Not enough empirical data to determine if there would be an impact on overall life expectancy, and the daily chemo has many side-effects.
I decided to go with the maintenance. I figured that 5 years gave science time to find alternative therapies or maybe even a cure. I would take my chances.
The Revlimid is very efficient at keeping my cancer at bay. It has been over 6 years since my transplant. The side-effects are debilitating at times. Fatigue, muscle spasms, peripheral neuropathy in my feet and hands, diarreah, chemo brain (confusion and memory issues). The drugs to treat the side effects have side effects of their own. Weight gain, more fatigue, confusion, tinnitus. But I am here. I am kicking cancer’s butt every single day!
When I was diagnosed there was a 4 year life expectancy. Now it is officially 5 but most people live 8-10. Some are living 15-20 years!!! I am 7 years post diagnosis. I have a great outlook and accept my limitations. I live my life to its fullest.
I travel (pre-COVID), read, craft, write, and have seen my son, Mark, get married - and my daughter, Kaila, is having my first grandchild in a few weeks. These are things I never thought I would see. I have driven the coast of Southern California; hiked to the top of Diamond Head in Hawaii; snorkelled in the USVI’s and the BVI’s, Bermuda and Hawaii; soaked in the geothermal heated waters of Iceland’s Blue Lagoon, Banff’s Sulfur Mountain Hot Springs, BC’s Ainsworth’s Hot Spring and Collingwood’s Scandinavia Spa; watched Mark and Rachelle get engaged at Universal Studios Orlando; watched the sun set in Sedona; stayed at the Bellagio Hotel in Vegas; watched performances by Adele, Ed Sheeran, Elton John, Garth Brooks, and Carrie Underwood; and spent many a day with wonderful friends and family.
To look at me, you see a typical middle-aged woman. Inside there is a war on my blood. A chemical battle that ravages my organs, my digestive system, my thought processes. Most blood cancers are invisible. Most blood cancer warriors do not let you see the pain or the anxiety they are feeling. They want to be normal and live a normal life. Be aware. Understand blood cancer. Be supportive of your loved ones who are battling this disease. They look like they are doing great, but they might need patience, understanding, and they certainly don’t need judgement.
One of the most common complaints I see on the FB message boards is that family or friends feel that they are lazy and not pulling their weight. They do not understand why they cannot continue to work, care for home and family as they did before. They look the same (after their hair grows back).
I feel that pressure too. Many days I do nothing. NOTHING. I rest and regenerate. I feel guilty. So I get up and do stuff. Too much. Then I crash. I am done for a few days. I can’t do what I used to do. If I look great...I probably had to work hard to look like that.
If I have an event to go to I book nothing the day before and the day after as I must reserve my energy for that 3-4 hours that I need to be “present”. An “event” could be a dinner out at a restaurant with friends, or a neighbourhood BBQ, or a wedding or theatre production. They all take preparation, planning and rest.
I am telling you this, only to educate - not to seek out your sympathies or your cudos. Just to educate. Increase awareness of blood cancer in September. Blood Cancer Awareness Month.
