Another year has come and gone in the life of this Lymphomaniac; today is my fifth "Cancerversary", the anniversary of my diagnosis with CLL/SLL in 2010. The past five years have been interesting, if not nearly as challenging as they could have been if I were diagnosed with a more aggressive form of blood cancer. All-in-all, I've little to complain about, though I have learned a bit more about myself as well as my disease over the years.
I remember being pretty freaked out (to say the least) upon learning of my diagnosis in 2010, after all my mother had died from complications arising from the same disease 31 years earlier in 1979. Aside from the trauma of receiving a phone call at work informing me that I had Cancer, one experience that continues to stick in my mind is the conversation with a specialist at Stanford University who explained that little had changed with respect to the treatments for CLL/SLL since the 70s, except that side-effects could be more effectively managed. That was a sobering statement, though fortunately the doctor's statement is no longer true today as I'll report a bit later in this post.
I've found that I've slowly become accustomed to the fact that I'll never be cured of my form of Cancer and no longer allow it to consume my every thought. The fact that CLL/SLL is typically a very slow-growing Cancer is both a blessing and curse.
The "Blessing": The slow progression of the disease in my case has allowed me to live a pretty normal life for the past five years. My initial three years were pretty uneventful as was my treatment with Rituximab (an immunotherapy agent) in February and March of 2013 (though I did experience some noticeable, though not really severe, side effects after treatments). The treatment wasn't fully effective as I did not achieve remission, only a slowing of the progression of the disease. For the past two years I've been back on "watch and wait" status with periodic monitoring of the disease, in my case every four months, to check the progression. I'm truly blessed that my particular form of the disease seems (for the moment) to be pretty indolent.
The "Curse": Over the years since diagnosis, I've learned that "patience" is not one of my virtues. The seemingly endless periods of watching and waiting for the disease to progress, along with the knowledge that I will eventually require additional treatment and/or the disease may transform to a more aggressive form do affect me periodically. I've always been a person that likes to attack a problem head-on and reach an effective resolution. The uncertainties of living with CLL/SLL; not knowing when treatment will be required; the "unknown" of if or when the disease will become more aggressive, test my resolve and do cause me to come unglued periodically to this day. Such is human nature, I doubt that I'm unique in this respect.
Improvements in Treatments: Fortunately, the medical community continues to research more effective treatments for CLL/SLL that have less potential for short- and long-term impacts. Immunotherapy options other than Rituximab are currently available that specifically target the diseased blood cells and are formulated in a manner that patients experience fewer side-effects from treatment. Perhaps the most significant advance in the past few years is the Food and Drug Administration's approval of Imbruvica as a daily oral medication that can (both alone and with other treatments) push the disease into remission and keep it at bay for an extended period of time without harsh side-effects. Imbruvica represents the first CLL/SLL treatment that is designed as treatment of the disease as a chronic illness, one that minimally impacts the quality of life of the patient. Though I am not yet eligible for treatment with Imbruvica, my hope is that by the time I require treatment, it may be approved as a first-line treatment for the disease and made available for my use.
As of my last check-up with Dr. Kaplan in late-January, I'm still trolling along on watch and wait status. There is evidence of disease progression as some of my palpable lymph nodes are a bit larger (though not dramatically so) and I have evidence of infiltration of the disease into my skin (according to my dermatologist). Other than those issues, I still feel pretty well, am able to work full-time and find that the disease doesn't significantly limit my activity level.
What does the future hold? Your guess is as good as mine! Any of our numbers could be called up at any time, so why dwell on the unknown. You've got to keep living, knowing that you have little (if any) control over the future. I'll continue to attempt to take this advice to heart and live a normal life until circumstances tell me otherwise. In the meantime, be well!
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