Yesterday I closed my post with this cryptic statement:

I wanted to keep those of you who kindly follow my site updated on my medical journey.

While my latest medical update may not live up to the sensationalized headline, I am facing some serious issues with low blood counts and questions about whether I can continue on my RVD consolidation therapy as planned.

I’m breathing a sigh of relief right now.

Last Wednesday, Californian Lori Puente stopped-in to visit our Nature Coast (Florida) Multiple Myeloma Support Group meeting and Christmas party.

Good news for me Monday.  I met with Dr. Alsina and all is going as hoped!

A reader wanted to know:  “What is an M-spike?”

For those of you who haven’t visited this site recently, you are in for a surprise!

Statistics are a double-edged sword.  I knew before I agreed to try a stem cell transplant that there was a chance it wouldn’t work for very long–the average autologous stem cell transplant (ASCT or SCT) only provides 18 months of respite before the myeloma becomes active again.

Lots to cover this morning…

Yesterday my wife, Pattie, and I spent the day in Tampa at Moffitt Cancer Center.

I work hard not to make this site “all about me.”  But I wanted to share a short update about a few recent health concerns.

My blood work is back from my three month check-up last week at Moffitt Cancer Center.  Everything looks fine.  My body continues to tolerate my maintenance regimine of 10 mg Revlimid (no dex) 14 days on and 14 days off.

Is the old saying “death by one thousand” or “ten thousand paper cuts?”  Either way, welcome to the world of any multiple myeloma patient! Traveling by car to Orlando this weekend for a friend’s wedding, I mentioned to my wife, Pattie, how I had heard back from my oncology nurse, Ally, yesterday with my blood counts and M-spike results. My M-spike is still .3. No change. I thought this was good news—at least two more months of lower dose Revlimid—only 10 mg 14 days on and 14 days off. But Pattie didn’t react. I prompted her: “Hey Hon, isn’t that good news?” Still no reaction. “But my M-spike isn’t getting any worse!” I exclaimed. Pattie paused and replied: “But it isn’t any better.” Well said. Pattie is “greedier” than I—she wants it all—she wants a cure! I’m more practical. I will take whatever I can get! That said, I did start to ponder my fate as we quietly drove on. One or two more months. It could be so much worse! Or as she said—it could be so much better! Here I sit—as do all my fellow myeloma patients—waiting and watching. Watching, waiting, and hoping—and praying—for just a bit more time. A few more months or years. For some of the more fortunate of us, we may live much longer than anyone anticipated. But some of us won’t. Don’t get me wrong—it could always be worse. But multiple myeloma means three/four/five years or (hopefully) longer of blood tests, X-rays, MRI’s, chemotherapy and stem cell transplants which sap our strength and tear down our bodies—one test, one pill or IV, one “paper cut” at a time.

I returned to Moffitt Cancer Center in Tampa, Florida Friday for more blood work.  It has been one month since my M-spike registered a .3.  The four months prior (two subsequent tests) revealed there was myeloma present, but the M-spike was too small to measure.  Prior to that, I had been in complete response (CR), with no trace of myeloma or the associated protein in my marrow or blood. 

Are most of you familiar with CaringBridge?  This free, interactive service is the largest of several blog/journal type sites for those of us with serious medical conditions.  Since I blog daily on this and our http://www.helpwithcancer.org/ site, I don’t use CaringBridge as often as I did starting a few months after my diagnosis.  Journaling on the site helped me in two different ways:  First, it helped me organize my thoughts and update friends and family.  But the best part was all of the positive notes I received on the site’s guestbook—a feature allowing those reading CaringBridge to comment on my condition—sending best wishes and positive vibes.  It was overwhelming reading notes from so many people—some I barely knew. Very uplifting!

For the past six months, Dr. Anderson in Minnesota and Dr. Alsina at Moffitt Cancer Center here in Florida have been closely monitoring my IgG kappa paraprotein levels through blood work.  After two years of complete response (CR) or remission, my last two lab reports indicated my myeloma might be returning—although the M-spike (the test used to measure paraprotein in your blood, which is an indicator of active myeloma) was still too small to accurately quantitate.  My latest labs reveal the inevitable has indeed happened:  My M-spike is up to .3.  In the grand scheme of things, this isn’t earth shattering news—there are many, many multiple myeloma patients who’s cancer is far more advanced or aggressive than mine. But taking a step back, I do find it fascinating how I am reacting to this news. Even though I write about multiple myeloma everyday—and even though I know I still have lots of treatment options to try moving forward—I can still feel my anxiety growing. In a way, it is like my post-diagnostic life is flashing before my eyes. Memories of the sights, sound, smells (and pain) I endured during my early treatments—all which had faded into my distant memory—are vivid and real once again.

I would be lying if I said I hadn’t thought about my latest labs today. But it was a busy day of household projects and shopping. Pattie and I took a long walk with our dog along a tidal area close to our Florida home. Herons and egrets. A cool gulf breeze. It sure is great to be alive! I’ll worry about my M-spike later.
Feel good and keep smiling! Pat

This past week I questioned the need of some myeloma patients to become overly technical and obsess over their test results and labs. “Try and live for today” I wrote. “Don’t just watch and wait–Live!” My point? Once you are diagnosed with multiple myeloma, there isn’t a lot a person can do to change their lot in life. Like anyone else, you play the hand you are dealt, select your best treatment option given what you know at the time and get embrace your “new normal.” Advice like this is easy for an outsider to give–or for someone like me that has been in CR so long he starts to forget what it was like to be up all night the day before an oncology appointment! Other people rarely understand the anxiety and angst associated with hanging on the results of each month’s blood test. Will I need to switch to another type of chemo? Re-consider undergoing a stem cell transplant? Or, worse yet, begin to realize that the drug you were using was your last, best option–and your life may be coming to an end. Last week I was the advice giver.