Tuesday, January 31, 2012

Inspiration that fuels my love of life, despite the peaks and valleys, has many sources. Martin Luther King's fearless frontal attack on the evil he knew would kill him in the end. 'Doctors and Nurses without Borders' forcing entry to places where evil men with guns threaten worse than death. Paula's (Feresaknits Blog) unwavering acceptance of the torturous effects of the harsh chemotherapy warring against her myeloma. And I have to admit, Tom Brady leading the Pats onto the field each Sunday is a charge.

When you sum it up, it has all to do with one's attitude toward life. You can face it scared. Or, choose to rise up, rushing headlong into the maw of the adventure, absorbing numbing  loss and newfound love. Then stand whenever possible to finish your day beneath the sparkled radiance of  tiny stars splashed against the immensity of a  black, ocean sky.

One of my favorite quotes says it best:

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”
 Hunter S. Thompson


Thursday, January 26, 2012

Results, Ramblings and God

I received the results from last Friday's blood work. My Kappa Light Chains dropped from 140 to 120 and the bilirubin fell to 1.0 from 1.70. Good news, particularly as the improvement occurred without treatment, other than a Zometa infusion.

The severity of multiple myeloma is mysteriously random from one patient to the next . Since being diagnosed ten years ago, there have been five or six difficult periods where the beast has interrupted my life. I have  recovered from each and returned to a relatively normal schedule because;

A) The Oncology Team at the Dana Farber has been spot on with their treatment.
B) The strain of multiple myeloma attacking my body goes into hiding after chemo.

Easy enough explanation, but not satisfying in the end because the questions remain; why do I have an easier time than so many others? More pointedly, why an easier time than the young people in the same fight? It may be that there are no answers but I'm tired of hearing, 'we must trust in God's mysterious ways.'

My concept of God continues to evolve but I believe He or She is smart enough to teach us a lesson, any lesson, without need of a young cancer victim as the mechanism. I do not believe He causes anyone to become sick or to be the victim of misfortune. God, perhaps, started the clock and gifted us a conscience and free will, then stepped back to watch how we would treat one another. Despite my current stance, however, I find myself speaking with God and the tone recently has become contentious if not heated at times. Although I believe He doesn't cause sickness I'm certain that He has power enough to stop it. Maybe just for the younger folks?

Religions, in my opinion, are exclusive clubs. They are made so by the requirement of obedience to leaders who have as their objective, domination over all other religions. A personal relationship with one's God is anathema within the rigid confines of institutional religion. Outside those boundaries it is the source of freedom, relief, and appreciation for the gift of life, as it might be lived in shared exuberance with folks we love.

If I could codify God's boundaries for me it would contain these four elements;

Be good to others, always.
Be kind to yourself.
Look for the beauty in each moment of existence.
Avoid the dark evil of despair.

God has no tolerance for despair. When I have felt the insidious creep of depression, due to the roller coaster ride of multiple myeloma for example, God reaches out to me. As long as I take His hand and allow His strength to hold me above the surface, we're good.

If I ignore Him in this, his anger is palpable, a searing intensity that focuses my attention. It is up to me to reach, and He will  pull me back from the hell of hopelessness. His miraculous gift is this life continued, with the beauty, love and pain it holds in store for me.

I  confront God with my anger that he allows children to suffer from disease, famine or the fire of exploding bombs, He laughs, and turns it back on me.

'It is not my doing,' he seems to say. 'You are the key variable in the most basic equation.'

 'Would you give away all you possess to save one tiny life?', he asks me.

'Will you leave the comfort of your home and family to care for the million babies, starving to death in their mothers' arms in the desserts of the Sudan?'

'Are you intending to go to those places where bombs rain down, to hold frightened children when there is no place to be safe?'

'You alone can be a force to save tens, hundreds possibly thousands from the pain you blame me for... Will you help?'

 I know the answers to His blunt, fundamental questioning of the depth of my convictions. I've calculated the cost of the truth. Thus I say nothing and remain silent as time ticks away and I settle into the corner of the darkness surrounding me.

Soon, He is silent as well.

Tuesday, January 17, 2012

The Dog Ate My Homework...

Multiple Myeloma patients contribute some heady commentary full of intimidating statistics, analysis and the implications of various FDA drug trials. At times I feel like I'm sitting in science class without having completed my homework assignment.

My next clinic visit is Friday, January 20th, at the Dana Farber Cancer Institute here in Boston. (You may have heard of Boston as the home of Mr. Thomas Brady, the greatest quarterback in NFL history.) The oncology team at the Dana Farber is one of the nation's top teams in the battle against cancer.

My treatment over the past 10 years has been successful and it might be that I've taken the good work of my doctors and nurses for granted. They have taken me through a couple of rough spots and have found a balance between aggressively confronting the myeloma versus backing off when it seemed my immune system could do the work. Recently, my numbers have jumped a bit and I'm looking forward to Friday to see what the blood work and exam reveal.

I was last treated with revlimid in 2009 and have been in relatively good health with a zometa infusion every other month.

Trying to catch up with the class, I went back and reviewed what I think are important numbers. I have the kappa light chain version of mm and looked at those stats first:

  Date                                       kappa light chains range       (19.4mg/l is top of normal range)
Aug. 2010 to July 2011               80 to 85mg/l
Aug. 2011 to Nov 2011               100 to 106mg/l
Dec. 2011                                          140mg/l

In mid 2007, kappa light chains peaked at about 300 mg/l.

The Kappa/Lambda ratio registered at 29.412 in December 2011, vs 1.65 normal value.

Bilirubin December 2011 registered at 1.7 vs normal of 1.2 (not clear on the significance), so a touch high.

My creatinine is always 1.4 vs 1.3 normal, but the consistency of the value probably means I just don't drink enough water.

In general I feel a bit more fatigued than usual but I've avoided serious colds, bronchial infections and such, because the nurses attack like Seal Team Six at the first sign of a cough, rise in temperature, etc.

If you think I'm missing something, if there are more data points that I should be looking at, please feel free to advise. Thanks for checking in.

Friday, January 13, 2012

Multiple Myeloma Missive: I Got Three Quarters of the way there... Did I?

Multiple Myeloma Missive: I Got Three Quarters of the way there... Did I?

I Got Three Quarters of the way there... Did I?

I was watching a Biffy Clyro music video, the Scottish band, performing 'Bubbles', working to the limit of exertion. Through instrument and voice they produced a sound so powerful it was lifting the thousands of young people in Wembley stadium to a level of exuberance that cannot be duplicated by anything artificial, substance or otherwise.

Thoughts of what I had done in my life, with my life, ran through my head as I watched these guys who have been for years intensely committed to their music, determined to reach the top of their world. Had I worked as hard what adventurous goals might I have attained? If I had followed my heartfelt passion could my life have been as full for just one, single night? Did I get three quarters of the way there? Half way?

My friend Paula comes to mind each time I watch the video. I picture her and her husband Bernard in the midst of the crowd singing the words, which of course Paula would know by heart, and dancing with the exploding lightness and overflowing joy that best defines youth in all its blazing glory. I think Paula would be a featured audience member if caught on video at a Biffy Clyro concert, in the midst of the mob, spinning wildly astride her Bernard's shoulders!

Unfortunately, Paula's tied up right now fighting off the effects of multiple myeloma, one of God's most predacious diseases.

Paula is one who fills each moment of the day with creativity. She knits clothing for everyone in her neighborhood and little yarn creatures for the children. She paints her house, has a garden and makes her own Christmas cards. She is a brilliant dog trainer and photographer. Above all, though, she is a writer, a genuine author, exploring the joy that can exist even at the dangerous edge of life, something we fellow mm travelers understand better by reading Paula's work.

I check into Paula's blog daily because she makes me laugh and I always learn from the wisdom she generously shares with her readers at "Feresaknits Blog". I'm praying that she soon vanquishes the marauding cells attacking her body and achieves complete remission. I hope she does so in time to attend the next Biffy Clyro concert which is planned for June 23 on the Isle of Wight. If so, the tickets will be on me. I might finally meet Paula and Bernard there in person... Why not!!!