On June 19, I returned to the Dana Farber to begin the first of several chemo cycles which will culminate in a stem cell transplant in early September. The initial cycle of four treatments on consecutive Tuesdays and Fridays, consisted of Velcade and Dexamethasone. Last week was treatment free. Today Tuesday, July 10, begins the next four part cycle with Revlimid added to the Velcade and Dexamethasone.
As I resigned from my work effective June 29, anxiety struck and I had a sense of how Wylie Coyote must feel in that instant of clarity, right after chasing the Road Runner off the edge of a cliff . Seemed like a good idea in the moment, though the ramifications are significant and decisions need to be made fast!
At sixty-three I was prepared for everything but continued health care coverage. Not that I had ignored it, but the fact remains unless one is a retiring CEO of a major US bank, or a congressperson, (even a one term congressperson), when one's job ends it's difficult to avoid joining the ranks of Americans without health care. The choices available are expensive and fraught with limiting covenants, like preexisting conditions, that classify many of us as ineligible to join a new health care plan.
It was once considered a patriotic investment to enable affordable health care and education for the American people. Today more than 50 million citizens live without health insurance and more than 50% of college seniors will graduate with an average student loan debt of $25000. Before 1980, the amount of student debt was negligible in comparison.
In terms of the treatment I was struck by the level of fatigue that follows about an hour after the Velcade 'push', while the Dexamethasone kicks in with a wired, edgy effect disrupting sleep on the first night. However, I'm not complaining. Granted, I have completed just four sessions in the first of many cycles, but a light, splotchy rash on my back and chest is the only other side effect thus far.
On each visit an hour before the drugs can be administered, for those new to the process, blood is drawn and analyzed to be sure various markers - creatinine, protein, liver function - are strong enough to handle the treatment. During the last appointment my Infusion Nurse, Mary, scanned the preliminary blood work and told me I was a "problem drinker" and hooked me up to a bag of electrolytes. As I don't drink alcohol, the label referred to my lack of daily fluid intake resulting in a slightly inflated creatinine, a measure of kidney function. One of the reasons I don't drink enough water is that at sixty-three the frequent need for a men's room when out and about can be inconvenient. Thus, I consciously watch how much I drink if venturing from home. Mary strongly advised that the inconvenience of possible dialysis is far more significant.
Boston is a beautiful city almost year round and this summer will rank among the most glorious of my lifetime. Hundreds of small sailboats skip across the rippling currents of the Charles River, the sun's squint inducing reflections flash from the bleached white sails which snap, and turn, subservient to the wind currents. Half push toward the northern banks of the university dense Cambridge shoreline; the rest cut back, heading for the concentration of Boston's skyscrapers, separated from the southern bank of the river by the narrow gardens, lagoons and bike paths of Boston's Emerald Necklace. Carson Beach, twenty minutes by trolley or a forty-five minute walk form the Charles, is packed with families and singles of all ages basking in the sun or clustered neck deep in threes and fours, in the unusually warmed Atlantic Ocean off the South Boston shoreline.
The tough 'Southie' kids keep it in check because of the many children scattered across the sand. They're not bullies for the most part so it's relatively trouble free during the day. Of course if you go there looking for trouble, you'll find it before your second step splashes sand into your flip flops. Surrounded by working class neighborhoods there is a disproportionate representation of combat veterans, recently returned from a second or third tour in Iraq or Afghanistan. A few years ago they were the tough 'Southie' kids but now, sitting on blankets or beach chairs, they stare out to the vast expanse of the sea, and the hope of a life force strong enough to help, for the moment at least, ease the pain of the harrowing ferocity of combat. They tend to keep to themselves and most give them space.
I can't help thinking of Paula Kilgallon every day. The way Paula lived defines, for me at least, how precious this life is and how little time we have to taste and feel and discover the tantalizing gifts hidden in the moments we let pass by. I apologize if this sounds like I'm trying to preach, as if I have answers to the obvious questions. I have no solutions or strategies that might open hearts to a level of awareness that is, frankly, much higher than that which I possess. The truth is, as I read this back, I am talking to myself from start to finish.
Tuesday, July 10, 2012
Wednesday, June 20, 2012
Multiple Myeloma -Truth Finder Guide
As a newly diagnosed patient in January of 2003 I spent too many hours searching for unvarnished descriptions of what Multiple Myeloma was going to do to me, immediately and long term. The difficulty was in learning the questions to ask. Eventually I was led to a Blogger network of patients and caregivers who write frank, unequivocal accounts of becoming the aggressor, not the victim, in this struggle. I've listed MM Bloggers which I have come to rely on categorized by the type of information, data, or story the Blogger presents. All of the Bloggers are patients, caregivers and occasionally an oncology professional, and many offer links to additional useful sites. But this is a sample of the those I've come to rely on for information, support and for a good laugh now and then.
COMPILATIONS:
The Myeloma Beacon: Daily scientific and drug therapy news; Timely publication of Blogs by other patients: A forum to voice common questions and concerns; reporting by patient staff writers.
Multiple Myeloma Blog: Written by Pat Killingsworth, author and MM patient. Pat single-handedly covers and reports on the major MM national conferences; debates treatment concerns such as the efficacy of stem cell transplants; candidly discusses his personal treatment in detail; offers relevant books and articles through an online store.
FAMILIES:
Multiple Myeloma For Dummies: The story of Phil Brabb, a former collegiate athlete diagnosed at 28, and his lovely, determined wife Cassie. This blog crosses categories but gives an honest appraisal of the complexities of raising three small children, maintaining a household and a sense of family normalcy, during Phil's aggressive treatment. Phil and Cassie recorded his stem cell transplant, stage by stage, producing a candid portrayal of the emotional and physical toll exacted by this procedure. Cassie has a related blog called, "Spilled Milk" which is specifically dedicated to family concerns through the eyes of a busy 'caregiver' Mom.
Roobeedoo: By a lively, witty and creative woman, the ongoing saga of Roo, set among bucolic Scottish farm country, where she is the 'caregiver' of her husband, FL (First Love). Despite work, seeing to the needs of her two young adult children, and supporting FL's MM challenges, Roo finds time to knit and sew and model her creations. Roo manages to consistently blog all of it, the highs, the lows, the hard work and the challenge of keeping all aspects of family life together.
Walking With Big Easy: Authored by his wife, Linda, as four generations of this grand family support EZ in his stand against MM. Abounds with positive energy, and lasting family connection built on the solid foundation of EZ and Linda's commitment. A story of the reality of Multiple Myeloma within a philosophy that life goes on with "great vigor", (to quote JFK's inaugural address).
EXERCISE:
The Adventures of Cancer Girl: A young Mom struck with MM at 37 who is now training for half marathons with her husband Jay, sponsoring parties for her seven year old TWK, The World's Greatest Kid, and following every (creaking) move of an ageless, (in her mind), still talented Bon Jovi.
Myeloma Hope: Don has been standing toe to toe with MM for nine years with the dedicated support of his family. Don is a long distance runner who is working toward his goal of running a marathon in every state, while being treated for MM. In addition to explaining scientific findings on up and coming MM drugs on trial, Don offers delicious menus containing cancer fighting food types cleverly integrated into the menu. After trying a couple of his dishes it occurred to me that a marathoner's fuel needs might be necessary to offset the calories. Or, I could limit myself to a single serving.
SPECIAL ATTRIBUTES:
Sander's Blog in English: A Dutchman who matter-of-factly relates his daily contest with the pain and symptoms of active MM. Hope is that the "Dark" days are behind him.
LITERATURE:
Retired for Good: Connected to the MM community through a family member patient, initially, Sandy's Blog remains relevant to the MM experience while taking us on a brilliantly written and colorful travelogue. A brave woman whose travels allow me to learn about and enjoy places I would hesitate to visit.
Riding The Wave - Multiple Myeloma: Beautifully written by 'care giver' Lori Puente, at once poignant, inspirational and informed. Worth a visit every day for the unpredictable experience of Lori's words of encouragement, remembrances, and treatment information.
A reader sampling some of the above blogs will sort out those of particular value, and find links to others I have not mentioned of helpful perspectives. The opportunities to express feelings of worry, anxiety even panic, about a MM diagnosis are myriad, by commenting on a Blogger's post or starting a Blog of one's own.
Elizabeth, an artist and former 'caregiver', who lost her husband two years ago to MM, has a significant impact in the community through her comments on MM Blog posts, and introduced me to several of those I follow. When asked why she continues to devote so much time to this work she responds that she speaks from her experience of the pain from beginning to end. She adds that as long as she can help with her words, she does not wish to give up her place. I hope to enjoy her continued support for years to come.
We recently lost Paula Kilgallon, author of "Feresknit'sblog" and in my opinion the strongest, most brilliant Blogger I have read. It is painfully sad that Paula has left her husband, Bernard, her puppy, Buddy, and all of us. Writing this I realize she lives on in our hearts. I return to her Blogger posts every day to rekindle the inspiration her words gave to me.
Blessings
COMPILATIONS:
The Myeloma Beacon: Daily scientific and drug therapy news; Timely publication of Blogs by other patients: A forum to voice common questions and concerns; reporting by patient staff writers.
Multiple Myeloma Blog: Written by Pat Killingsworth, author and MM patient. Pat single-handedly covers and reports on the major MM national conferences; debates treatment concerns such as the efficacy of stem cell transplants; candidly discusses his personal treatment in detail; offers relevant books and articles through an online store.
FAMILIES:
Multiple Myeloma For Dummies: The story of Phil Brabb, a former collegiate athlete diagnosed at 28, and his lovely, determined wife Cassie. This blog crosses categories but gives an honest appraisal of the complexities of raising three small children, maintaining a household and a sense of family normalcy, during Phil's aggressive treatment. Phil and Cassie recorded his stem cell transplant, stage by stage, producing a candid portrayal of the emotional and physical toll exacted by this procedure. Cassie has a related blog called, "Spilled Milk" which is specifically dedicated to family concerns through the eyes of a busy 'caregiver' Mom.
Roobeedoo: By a lively, witty and creative woman, the ongoing saga of Roo, set among bucolic Scottish farm country, where she is the 'caregiver' of her husband, FL (First Love). Despite work, seeing to the needs of her two young adult children, and supporting FL's MM challenges, Roo finds time to knit and sew and model her creations. Roo manages to consistently blog all of it, the highs, the lows, the hard work and the challenge of keeping all aspects of family life together.
Walking With Big Easy: Authored by his wife, Linda, as four generations of this grand family support EZ in his stand against MM. Abounds with positive energy, and lasting family connection built on the solid foundation of EZ and Linda's commitment. A story of the reality of Multiple Myeloma within a philosophy that life goes on with "great vigor", (to quote JFK's inaugural address).
EXERCISE:
The Adventures of Cancer Girl: A young Mom struck with MM at 37 who is now training for half marathons with her husband Jay, sponsoring parties for her seven year old TWK, The World's Greatest Kid, and following every (creaking) move of an ageless, (in her mind), still talented Bon Jovi.
Myeloma Hope: Don has been standing toe to toe with MM for nine years with the dedicated support of his family. Don is a long distance runner who is working toward his goal of running a marathon in every state, while being treated for MM. In addition to explaining scientific findings on up and coming MM drugs on trial, Don offers delicious menus containing cancer fighting food types cleverly integrated into the menu. After trying a couple of his dishes it occurred to me that a marathoner's fuel needs might be necessary to offset the calories. Or, I could limit myself to a single serving.
SPECIAL ATTRIBUTES:
Sander's Blog in English: A Dutchman who matter-of-factly relates his daily contest with the pain and symptoms of active MM. Hope is that the "Dark" days are behind him.
LITERATURE:
Retired for Good: Connected to the MM community through a family member patient, initially, Sandy's Blog remains relevant to the MM experience while taking us on a brilliantly written and colorful travelogue. A brave woman whose travels allow me to learn about and enjoy places I would hesitate to visit.
Riding The Wave - Multiple Myeloma: Beautifully written by 'care giver' Lori Puente, at once poignant, inspirational and informed. Worth a visit every day for the unpredictable experience of Lori's words of encouragement, remembrances, and treatment information.
A reader sampling some of the above blogs will sort out those of particular value, and find links to others I have not mentioned of helpful perspectives. The opportunities to express feelings of worry, anxiety even panic, about a MM diagnosis are myriad, by commenting on a Blogger's post or starting a Blog of one's own.
Elizabeth, an artist and former 'caregiver', who lost her husband two years ago to MM, has a significant impact in the community through her comments on MM Blog posts, and introduced me to several of those I follow. When asked why she continues to devote so much time to this work she responds that she speaks from her experience of the pain from beginning to end. She adds that as long as she can help with her words, she does not wish to give up her place. I hope to enjoy her continued support for years to come.
We recently lost Paula Kilgallon, author of "Feresknit'sblog" and in my opinion the strongest, most brilliant Blogger I have read. It is painfully sad that Paula has left her husband, Bernard, her puppy, Buddy, and all of us. Writing this I realize she lives on in our hearts. I return to her Blogger posts every day to rekindle the inspiration her words gave to me.
Blessings
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