Sometimes Sadness Prevails

This morning in the shower I felt suddenly overwhelmed by sadness.  I stood there with the warm water streaming over me and I couldn’t make myself move.  What I really wanted to do was curl up in the corner and just stay there letting the water wash over me.  Maybe I was hoping it would wash away the gloom I was feeling.  

Why this melancholy?  I am in remission and doing fairly well.  Before I was in remission, I thought if only I could get to remission, I would be a lot happier and I suppose I am most of the time, but right now is not one of those times and I am not sure why. 

Earlier this month my neighbor next door passed away.  I can remember the day in 2010, a couple of months after I was diagnosed with multiple myeloma, when he came over to see how I was doing.  He then told me he had been diagnosed with liver cancer.  He was never far from my thoughts and he was always in my prayers.  Around that same time, one of my dear high school friends was diagnosed with stage 4 colon cancer that had spread to the liver.  She hadn’t been sick at all and it was a shock to everyone.  On March 19, she lost her difficult battle.  She, too, was never far from my thoughts and was always in my prayers.

Washington State has experienced back to back La Nina weather patterns over the past two years which means it has been cooler and wetter than usual.  Seattle is known for rain, but in reality it usually gets less than 40 inches a year – the rain is just spread out over more days.  But, with La Nina, we have had more than our usual share of rain.  As a native of the Pacific Northwest, rain and cold weather usually never bother me, but maybe they are contributing to my current state of mind.

Perhaps what is weighing most on me is the uncertainty of remission because there is no guarantee that it will last very long.  It could last for just a few months or it could last years.  Wouldn’t it be wonderful if the experts could say that remission will last at least one year or two years – pick a number – and then you could relax for awhile.  Of course, we all know that is not how it works.  It is the uncertainty that I sometimes dwell on and I know I need to stop doing that.

Knowing that there are so many cancer patients suffering and who are not in remission makes me feel guilty for feeling so sad and expressing these thoughts.  I need to snap out of it and I know I will because I have been an optimist throughout my life.  There really is no time to waste wallowing in gloom.  It is time to enjoy where I am right now. 

Cheerfulness is the very flower of health.

                                   

                                                                              ~Proverb

Seneca's Wisdom

“Life’s like a play; it’s not the length 

but the excellence of the acting that matters.”

Seneca the Younger

Roman statesman and philosopher   

(3 BC – AD 65)

When I read this Thought for the Day in the newspaper this morning, I considered how true it still is.  Seneca may have lived 2000 years ago, but the truths of life continue on through the millennia.  In our day, as it was in Seneca’s day, life is our “play” and the quality of our “acting” matters greatly.  

A diagnosis of a fatal illness brings this into focus in a very abrupt way.   Before diagnosis, life seemed to be spread out before me with many experiences and opportunities  to come far into the future even though I knew then that no one is guaranteed a long life.  After diagnosis, that all changed.  The reality of a shorter future was right there staring me in the face.   

Now, the quality of my “acting” takes on a new dimension.  I have always tried to live with integrity and honesty and with caring for my fellow life travelers.   As a first grade teacher, I had the privilege of educating young children and starting them off on their academic journey.  I felt a great responsibility and took it very seriously.  As I look back on those years, I know I aspired to excellence and hope I achieved it.  When I was Alpha Delta Kappa Washington State President, my theme for the two year term was, “In Pursuit of Excellence.” Those words guided me in all aspects of the responsibilities of that office.

In the time I have left, I want my “acting” to be excellent.  I hope to make a difference by giving back and I am still searching for how I will do that.  With my compromised immune system, volunteering in a school or any place where a lot of people congregate  is probably out of the question.  I am leaning toward volunteering at the Providence Regional Cancer Partnership which is where I had my radiation, chemo and I continue to see my oncologist.  I will be attending a Survivorship series there and may be interested in becoming a facilitator for future classes.  The most important thing is to not waste any of the precious time I have.

On a lighter note, I must take issue with Seneca.  It is easy to say the length of the play doesn’t matter when you don’t have a diagnosis of multiple myeloma or any other life threatening illness.  I still DO want the “play” to last a very long time and the length does matter.   Even though I have that thought, I know that Seneca was right and it is the “excellence of the acting” that matters most.

Reflections

When I started this blog, my intent was to publish entries from the journal I began nearly nine months after my multiple myeloma diagnosis.  It has been an interesting and sometimes challenging mission.  Many times, I have found it quite troubling to reflect upon certain stages of this difficult part of my life.   Unexpectedly, there have been times in this project when I have been pleasantly reminded that the inner strength that I didn’t know I had has been much more powerful than I could ever have imagined.  I know from reading other blogs of multiple myeloma patients that I am not alone in this. Revisiting my journal and editing it for publication have been  cathartic experiences that have brought clarity into the life that has become my new reality.  As my blog title implies, I have been compelled to find this clarity.  

It makes me sad when I read of other patients relapsing after battling so hard, but I know that is an aspect of the multiple myeloma world that we all face.  Right now, I am in remission but I know that sometime in the future I, too, will relapse.   It is comforting to know that there are many new drugs in the pipeline for multiple myeloma and that two new drugs are on schedule to be approved in 2012 in the United States.  

When I was undergoing my stem cell transplant, one of my physician’s assistants told my husband and me to remember that all the longevity estimates for MM patients are based on history and to keep in mind that with the advances being made, treatments are becoming more effective in dealing with the disease.  Those were reassuring words and I have thought about them many times.  

In an earlier post, I mentioned a seminar  I had the good fortune to attend in Seattle at Fred Hutchinson Cancer Research Center moderated by Andrew Schorr of Patient Power.  This seminar featured William Bensinger, MD, Director, Autologous Marrow Transplants at Seattle Cancer Care Alliance and Noopur Raje, MD, Director, Center for Multiple Myeloma at Massachusetts General Hospital.  Here is a link to a video of the seminar:

http://www.seattlecca.org/diseases/multiple-myeloma-treatment.cfm?gclid=CJnY1rP29q4CFWYZQgodLFBUyg

I am including it again because I think it is important and may provide encouragement to my fellow multiple myeloma patients and readers.  My husband, daughter and I came away from this seminar feeling  heartened and we were filled with hope for the future.

Hope

 Believe, Expect, Trust, Dream, Have Faith, Be Optimistic

 About a month before I was to begin the stem cell transplant process, I was shopping with my daughter when this mug caught my eye.  I was drawn to its shape and the intricate red design. Red being my favorite color, I couldn’t resist picking it up for a closer look.  As I turned it in my hands and saw the word “Hope” written  in beautiful script, I knew I had to have it.  It almost felt like it had been placed there for me to find and to inspire me to embrace hope as I began my long trek through a stem cell transplant.  

Hope is part of the human condition.  We hope for peace, better weather, to lose weight, to get a promotion, to be happy, our children to be happy,  to have a nice home, to travel  to far off places, to have a successful career . . . the list could go on without end.  Hoping to be healthy and live a long life are hopes that we all aspire to, but when we are healthy we often tend to take it for granted.   I know I did.

A multiple myeloma diagnosis changes everything, but it doesn’t mean you give up hope. Hope helps supply the energy needed  to face the battles ahead. Hope can’t take the place of actively fighting the disease through medical treatments and procedures, but it feeds the soul on a spiritual level that adds a sense of calm to chaotic emotions.

There always must be hope for better treatments and even a cure for multiple myeloma.  At a seminar  in November 2011 at Fred Hutchinson Cancer Research Center  in Seattle, Dr. Bill Bensinger said he has never been more hopeful about  multiple myeloma.  With all the research being done and the number of drugs in the pipeline for multiple myeloma, there is hope.

My beautiful red "Hope" mug moved with me to Seattle for my transplant and to this day it is my mug of choice as I enjoy my morning coffee, but more importantly, it is a constant reminder to never give up hope.

No Symptoms

When I was first diagnosed with multiple myeloma, I couldn’t bear to go online and look up information about the disease.  I guess I was just too afraid of what I would see.  Because I had access to world class treatment at the Seattle Cancer Care Alliance (Fred Hutchinson Cancer Research Center) and at nearby Providence Regional Cancer Partnership and I had complete confidence in my doctors, I made a conscious decision not to go online and research multiple myeloma.  I felt I could rely on their expertise until I was brave enough to do my own research.  After radiation, chemo and a stem cell transplant, I had learned so much that I was no longer afraid of what I might find online. I don’t always like what I find, but I do have the strength to cope with it.  Now, I am able to read about multiple myeloma and the blogs of multiple myeloma patients. Clearly, I could never have imagined that I would be writing a blog myself one day.

One thing I discovered online is that before I was diagnosed, I didn’t have one symptom of multiple myeloma.  I have read over the symptoms of the disease many times on various sites and the only symptom I could relate to was shortness of breath.  I have talked to my oncologist about it because it has been very puzzling to me.  He told me that shortness of breath in MM patients is due to anemia.  My shortness of breath was caused by a large plasmacytoma that was growing in the pleura around my lungs and the pleural effusion that it caused.   Thank God for the plasmacytoma because the plasma cells in my bone marrow were just getting started.  I had no bone damage or kidney dysfunction or any other symptoms of MM.  My first bone marrow biopsy showed only 10% plasma cells.    My doctor told me yesterday that I am a very unusual case in the way the disease presented itself.  I see the plasmacytoma as a blessing because the disease had not become rampant in my body.  It was just beginning.  That was the good news.  The not so good news, that I have mentioned before, is the pathology from the first biopsy showed that I have high risk myeloma. Without the plasmacytoma , who knows how far the disease would have progressed.

QUESTION:  Is there anyone else who was diagnosed without any of the symptoms of multiple myeloma?

Yesterday, I had my monthly appointment with my oncologist.  As usual, I was apprehensive about what the blood work would show.  Overall, my appointment went well and my doctor said I was doing fine.  My counts had gone down and that is always such a disappointment to me.  I expect them to go up every month and instead they go up and down like a Duncan yo-yo!

              03/14/12                     02/16/12

WBC                                        3.6   (L)                       4.5

RBC                                         3.31 (L)                       3.37 (L)

Hgb                                          11.6 (L)                        12.2

Hct                                           33.9 (L)                        34.7 (L)

Platelets                                  181                               196

Absolute Neutrophils             2.3                                3.0

The light chain numbers had not been posted, yet, and I pray that they continue to “behave themselves” as my doctor likes to say.

Longevity

The last post, “Thoughts Revisited” was the last entry from my journal which has been the content of Compelled Clarity to date.  Going forward all posts will be in real time.

Longevity is in my genes.  All four of my grandparents lived into their eighties and my dad lived to be 92.  My dad was one of seven children.  Four of the seven lived into their nineties, one to age 87 and one until age 79.  The youngest brother died of cancer at age 18 nearly seventy years ago. My mother just turned 93 and two of her three sisters lived into their eighties.  Her oldest sister died of multiple myeloma  (yes, multiple myeloma) at age 59.  So, with the exception of my dad’s youngest brother and my mom’s oldest sister, longevity has been prevalent.

I have always felt fortunate that longevity was part of my genetic history and it seemed likely I would live a long life.  When I was diagnosed with multiple myeloma just after turning 64, I felt like the rug had been pulled right out from under me and I knew that thoughts about my future would never be the same.  It has taken me a very long time to understand and accept the fact that the longevity that my family has enjoyed will probably not be in my future.

Playing the devil’s advocate, my  daughter  suggests  that I think about the possibility that my family history of longevity may well be an asset in my battle with multiple myeloma.  Food  for thought . . .

Thoughts Revisited

“I feel like my physical body is 

at war with my soul.”

Revisited

In October of 2010 when I began my journal which is the basis for this blog, the above thought is what inspired me to start writing.  This thought struck me in the shower, slapped me in the face and began to shape the new reality I was trying to understand.  I have thought about it many times since because it captured both what I was feeling and the internal narrative that I was creating. In fact, it seemed to control my thinking for over a year.  It wasn’t until the last visit with my counselor that I began to change my view.  She wisely suggested that I rethink this idea. She pointed out that the reality is my body is at war with the myeloma and fighting for me, not against me. It is the myeloma cells that are at war with my body and my soul. I know she is right.  

With the help of modern medicine and exceptional doctors, my body has been able to wage war against the myeloma cells and put them at bay for now . . . remission. With the help of a loving and supportive family and compassionate and loyal friends, my soul has been nurtured and I feel stronger every day . . . living.

Remission

At a recent appointment with my oncologist , he confirmed that I am in remission with no sign of disease. I always thought I would be jumping with joy at that news, but my reaction has been a little more subdued. I am eternally thankful for this wonderful news and I am very happy. However, it is really hard to comprehend that I have finally reached this goal. The last two years have been spent fighting this cancer and putting it into remission. It has been all cancer all the time. Now I have a future ahead of me without multiple myeloma being my central focus, at least for a while. I feel like I need to set some goals and make a difference, somehow, now that I have the gift of life more firmly in my future. I don’t know how long my remission will be, but I want to make the most of the time I have and not waste a precious moment.  The reality of what remission means is slowly sinking in……….and I feel fortunate, indeed.

My Dad

02/09/12
On the last day of my radiation, February 9, 2010, my dad passed away. I really did feel like my world was crumbling. My dad was 92 and had been failing for a few months and was hospitalized with C-Dif infection. That meant I couldn’t visit him at all because of my fragile condition.  It was awful not to be able to be with him at the end. The only blessing is he had been distraught about my mesothelioma diagnosis and even though it turned out to be wrong, I really don’t think he would have been able to handle my illness for very long. Especially, if he had learned that it was multiple myeloma, the same cancer that my Aunt Mary died of in 1959.  I am glad he never knew that.

My Dad, Harold Fitch    1917-2010

I miss my dad. . .

In Real Time: My "Puny" Immune System

While I am happy to say I am still in remission, my immune system, following the stem cell transplant, is still weak.  Since February 7th, I have had back to back colds.  The most difficult part has been running a fever and the incessant coughing which was much worse with the second cold. Today, is the first day that I have felt I might be turning the corner.  Maybe the azithromycin my oncologist prescribed is beginning to work.  At any rate, it has been a long three and a half weeks. 

My IgA, IgG and IgM Serum levels are all well below the bottom of the  normal range which indicate a "puny" immune system as my oncologist  says.  When I completely recover from this latest cold, I plan on keeping myself pretty isolated, at least, until cold and flu season are over.   Because I have been feeling quite well for several months, I know I have been over confident in my ability to fight illness.  I think I will dial back that confidence.