The Nightmare Began . . .

01/14/12 
Two years ago today, I went into the hospital for a biopsy on a tumor in the pleura around my lungs. On December 19, 2009 I had gone to my primary care physician because I was having trouble breathing and thought I might have pneumonia.  After listening to my lungs, she ordered an x-ray and the results showed my left lung was completely obscured by fluid. It was a pleural effusion and I was sent directly to the hospital and it was all pretty scary.  The next day they drained two liters of fluid!  It was obvious that something serious was going on and the following week I had a CT scan.  I got a call that my doctor had scheduled an appointment for me with a thoracic surgeon.  At that appointment, we saw the image of the tumor and the surgeon said it could possibly be mesothelioma or lymphoma.  At that point, I was very frightened.   

Two days later on January 14, I checked into the hospital for a biopsy.  Unfortunately, the biopsy led to emergency surgery because of massive internal bleeding caused by the biopsy. After all that drama, I was initially diagnosed with mesothelioma and had a very bleak prognosis. However, the bleeding and biopsy led the doctors to a different diagnosis of  plasmacytoma related to multiple myeloma. While a cancer diagnosis is never good news, this was a far better diagnosis than mesothelioma. Plasmacytomas are highly sensitive to radiation and chemotherapy and there are treatments for multiple myeloma even though it can’t be cured. After six days in the hospital recovering from emergency thoracic surgery that left about a ten inch scar and a ribcage that is still painful at times, I went home. Radiation started the next day.  


After 14 radiation treatments that got rid of the plasmacytoma, I had a bone marrow biopsy which showed that I had high risk myeloma.  The plasma cells were irregular with missing chromosomes and other abnormalities.  This diagnosis was quite disheartening and my husband and I  were stunned by the news. At this point, my oncologist said he was sending me to the “big boys” at Seattle Cancer Care Alliance.  Fred Hutchinson Cancer Research Center which is part of SCCA has been awarded three Nobel Prizes over the years.  One of the Nobel Prizes was for pioneering bone marrow transplants.  I think that is why they can be called, the "big boys."   Read about it at:

http://www.fhcrc.org/content/public/en/about/honors-awards/nobel-laureates/thomas.html

After many screening tests at SCCA, I was scheduled to begin a clinical trial.  However, on the day I was to begin, my neutrophils took a nose dive and I was disqualified from the study.  This was extremely disappointing news.  My doctor at SCCA sent recommendations to my oncologist here and I began chemotherapy in May. My regimen was dexamethasone, thalidomide and velcade.  The side effects were minimal, but I did have some days that my oncologist called my “splat” days.  What a perfect description for how I felt.  I finished in August and started mentally preparing myself for a stem cell transplant.

Footnote:  I consider my oncologist here, Dr. Mark Coughenour, one of the "big boys" too!  He is wonderful and I am forever thankful that he was on call at the hospital and became my oncologist when this all began!  Another gift . . .

Gifts

12/17/11 
Throughout the last two years, I have learned that I am both physically and mentally stronger than I ever thought I could be and to realize this is a gift.  I had always felt that if I was ever diagnosed with cancer or some other catastrophic disease, I would probably just crumple into heap on the floor and not be able to face it.  However, that is not what has happened and I am so thankful for the physical, mental and emotional strength I found I had during this ordeal.  
  
I have also learned that I have a large circle of family and friends who care about me very much and that is a wonderful gift. My husband, Brent, has been my knight in shining armor throughout this difficult time in my life and I just can’t imagine facing it without him.  My daughter has been another source of amazing support. My son and daughter-in-law even wrote a song for me to express their feelings at the beginning of all this. They are my gifts. As a member of Alpha Delta Kappa, International Honorary Organization for Women Educators and a past International Vice President and Executive Board Member, I have received hundreds of cards and notes and well wishes from across the organization.  My Alpha Delta Kappa friends have been like an extended family as they have supported me through my illness.  My school district friends and colleagues have been a constant source of encouragement and caring and my high school classmates have been as well.  It is a gift to know I am cared for by all these people. 

On a lighter note, I also received the gift of better hair and nails!  My hair grew back with some curl and body that it never had before and my fingernails are much stronger.  

 Lesson learned:  

Gifts can be found in even the most difficult of circumstances.

The Best Medicine

Cesky Krumlov

12/16/11
I felt I needed to get away in November so my daughter and I flew to Germany and spent two wonderful weeks with my brother-in-law and sister-in-law at their home in Bavaria. We traveled to the beautiful and historic cities of Regensburg and Passau where we visited the charming Christmas markets.  From Passau, we traveled on to the Czech Republic to the fairytale-like city of Cesky Krumlov. I had two weeks of “magical thinking” – all was well in my world.

Cesky Krumlov

Coping With Survivorship

12/15/11 cont.
This period of “Survivorship” is not something I was expecting, in fact, I didn't know it existed. After the last two years of battling multiple myeloma and finally finishing treatment for now, I found myself feeling completely at loose ends and somewhat depressed.   I haven’t had much mental energy or real interest in doing anything. I would have thought I would be jumping for joy!  However, that was not the case.  This led me to begin seeing a counselor at the Providence Regional Cancer Partnership and she has helped me make sense of my thoughts and feelings.  Some of my thoughts have included:  What now?  How did this happen? What’s next? Can I manage without weekly clinic visits?  Are they watching me closely enough?

When a patient has been through a long battle with cancer, it is hard to know how to feel when one gets to the point where treatment is no longer needed and is replaced with close monitoring, “surveillance” as my oncologist calls it. Right now, I am seeing my oncologist once a month and I am having zometa infusions each time I see him.  One thing I do know, is that multiple myeloma comes back, unlike some cancers. It could be next week, next month, next year or even several years from now.

 Recently, I have been reliving the stages of my stem cell transplant since it has been a year since it all happened. It is difficult to look back on those experiences and it makes me quite emotional as I sometimes find myself feeling pretty tearful. I am not sure why. I guess it is just hard to think about what has happened.  I am NOT feeling sorry for myself  and I have never thought, “Why me?”  Instead, I have always had the thought, “Why not me?”  because no one is immune from this disease. 

In Real Time: Link For Clinical Trial

Dr. Bill Bensinger of the Seattle Cancer Care Alliance has a new clinical trial open – details are at this link http://www.seattlecca.org/clinical-trials/multiple-myeloma-NCT01503242.cfm

In Real Time: Link to Patient Power

I highly recommend visiting this informative website, Patient Power:
www.patientpower.info/health-topic/multiple-myeloma


I had the good fortune to attend a muliple myeloma seminar 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.  My husband, daughter and I came away feeling very encouraged.  Interviews with these two experts in the field of multiple myeloma are available on the website.

From The Wall Street Journal. . .

 12/15/11
“Of all the medical treatments that cause extreme pain and deadly risk in pursuit of a cure, few are more daunting than a bone-marrow or stem-cell transplant to treat leukemia, lymphoma and other diseases. Patients get high doses of chemotherapy and radiation to kill cancer cells; then healthy cells are administered intravenously in hopes of building a strong new immune system. Even when it works, patients can suffer terrible side effects, dangerous infections and long-term physical limitations.”

From The Wall Street Journal article: 

Bigger roles For Chaplains on Patient Medical Teams

I knew a stem cell transplant would be daunting, but the strong language in this article would have really frightened me if I had read it before beginning my journey. Reading it after my transplant, I realize I got through it quite well with the only terribly miserable part being my bout with mucusitis.  There were some other difficult times, but the 17 days in the hospital with mucusitis was truly awful. I am thankful I got through most of it without the worst side-effects.  I strongly believe that the expert care  I received from the Fred Hutchinson Cancer Research Center and University of Washington Medical Center doctors and the staff of the Seattle Cancer Care Alliance made this happen.  They are leaders in the field of stem cell transplants and on the cutting edge of medical research.  I can't sing their praises loudly enough!

This is Who I Am

I have finally accepted who I am now. I am Carole Leigh and I have multiple myeloma which is an incurable blood cancer. It is just a part of me like my blue eyes. However, that doesn’t mean I won’t fight this disease, it just means that I accept it as my new reality and I’ll deal with it.  Maybe, someday down the road, it won't be a part of me or all the other multiple myeloma patients around the world.

One Year Since Transplant Began

10/21/11

On October 19, 2010 I began my transplant odyssey. While it seems impossible that it has been a year, it also seems like it was in another life.  On October 19 of this year I finished my 30 weeks of velcade maintenance. My counts are still up and down and my oncologist says I still have a "puny" immune system and it will probably stay that way until it has been a year from transplant. My light chains have been behaving themselves and I hope that continues. I would like to think I am finally in remission. There may be a bone marrow biopsy and an MRI at one year from transplant and then we will know for sure. I feel pretty well except I think I have developed a bit of “chemo brain” with the 30 weeks of velcade. I don’t have a lot of mental energy. I have also gained some weight which I hate. I think because I was unable to eat for so long, that I became very hungry when I could eat. Also, I haven’t been  going on walks like I should. I just haven’t had the energy. Hopefully, that will return now that I am finished with the velcade.

 
My mother now knows that I have multiple myeloma. She is having radiation on a small squamous cell skin cancer on her nose and while we were at her consultation, she told the nurse and the doctor about my stem cell transplant, etc. To make a long story short, when I said I had cancer of the bone marrow, her radiologist said, “So, you have multiple myeloma?”   Now my mother knows and she is sorry she ever found out. I was sure she probably suspected it, but she says she didn’t.   At least, she was spared knowing about it at the beginning when it would have been even more difficult for her to accept. For me, I am glad I don’t have to keep it a secret anymore.

The Sleeping Giant

08/14/11
It has been over seven months since my transplant and I am feeling pretty well most of the time. My WBC and RBC are below normal, but have stayed about the same for the last three weeks. Tomorrow, I will have my Cycle 4/Week 4 doctor’s appointment and infusion and then I will have the next week off, so that means two weeks between infusions. That should give my platelets a chance to rebound. There will be two more five week cycles of velcade and then it will be watch and wait.

I feel like I have a sleeping giant in my life and it could awaken at any time. I know that relapse is a high possibility with an autologous transplant, but I hope this giant is exhausted and needs a good long sleep. I am not ready to go through another transplant. Some days I feel incredibly sad and especially so the last few weeks.

In Real Time

This title indicates right now.  Up to this point, Compelled CLarity has consisted of entries from my journal beginning in October of 2010.  Occasionally, I have felt like adding things to this blog that are happening right now.  So, in the future, when you visit my blog and see the title In Real Time, you will know that what I've written, is about right now.


Today, I have my monthly appointment with my oncologist.  I will have blood work done and a zometa infusion as well.  Even if I am feeling well, these appointments worry me.  One never knows when the news won't be good.  It could be today, next month, next year or many years from now.   I am sure that all cancer patients go through this.  Even if we are positive, glass half full people, there is always that little voice of doubt in our heads that maybe this will be the day the news won't be so good.  Will  this ever change?  I'm not sure, but as long as there is no cure for multiple myeloma, the worry will always be there for me. 

In Real Time . . . Updated 

My appointment went very well.  My white blood count was normal for the first time since I was diagnosed.  It was at the bottom of the normal range, but I'll take it!  My kappa and lambda light chains are behaving themselves and staying in the normal range.  The way I see it, I have a whole month before I have to start worrying again and in my MM world a whole month sounds good to me.  

Carrying on With Recovery

07/08/11
It has been quite a long time since I have added anything to this journal. Maybe that is because I have been feeling well and my life seems pretty normal right now.   I have completed my third cycle of velcade maintenance and have three more to go. My blood counts continue to go up and down and my platelet count always goes down, down, down during the four weeks of velcade. When I have the fifth week off and go two weeks between the velcade infusions, my platelet count goes up. My oncologist said that as long as I am on this maintenance program, my counts will continue to fluctuate. 

Six Month Anniversary

On June 29, I celebrated my six months anniversary from transplant and that seemed like a big milestone. As I was going through transplant and the early weeks that followed my release from Seattle Cancer Care Alliance, I didn’t think I would ever get to this point. Now, I am moving toward seven months!

We Were Robbed!

In June, we went to Yakima for a weekend getaway and visited several  of the numerous wineries in the area. Washington State is the number two wine producer in the United States.  We had a great time and were planning to go to Leavenworth for some sightseeing, but on the way there our son called to say that our house had been broken into. The thieves stole our LED flat screen TV off the wall in our bedroom and they stole some jewelry. They also stole both laptops, so that is another reason I haven’t been writing in this journal until now.  It was an upsetting end to a lovely and relaxing weekend.  

Fortunately, I had recently purchased Carbonite which is an online backup system and I was able to retrieve all my files including this journal.

White Blood Counts . . . Up and Down

04/26/11
Every time I go in for blood work and see the doctor I worry.  Last Thursday, my blood count had gone up so I was happy. I wonder when it will ever quit going up and down. It is always such a disappointment when the numbers have dropped. My WBC was 3300 last week, up from 2900 the week before. However, I looked back at some of my old blood work records and found one from 2007, three years before I was diagnosed with multiple myeloma, and my WBC was 3300 then. Maybe I am prone to a lower WBC.

I have been feeling quite well and, mentally, I have had a very good attitude. It is almost like I think I can beat this cancer even though I know it is incurable and will flare up again in the future. I guess my thinking is, it probably isn’t going to flare up right now, so, I feel I am almost my normal self again.  Did I mention that I am a "glass half full" girl?

Omission

I just discovered that I didn't publish an important entry from my journal.  The title is "The Tests Have Ended...For Now" and the date 11/10/10.  It is now published in the proper sequence.

Day 100

04/07/11
Today is Day 100 since my stem cell transplant and I see it as a milestone. Earlier this week, it seemed like I turned a corner or  walked through a portal. For the last several months, my reality has been all about stem cell transplant and recovery. This week seemed different, as if a veil had been lifted and I was back in my normal world – well almost normal. I feel better both physically and mentally and my outlook is very positive. I don’t know how long I have until this disease flares up again, but right now I feel like it is off in the future sometime and far off – I hope. I am feeling well and very happy to be on Day 100 of my transplant. My recent bone marrow biopsy and MRI turned out pretty well. The results showed that I am not in complete remission because there are a small number of cancer cells left. My oncologist said that without modern technology, they wouldn’t have been able to count them because the number was so small. However, I was disappointed that there were ANY cells left.

Today was the first day of my maintenance treatment of velcade and it went well. I also had my zometa (bone strengthener) infusion. I won’t have that one again until Day 1 of the second cycle. The cycle is velcade once a week for four weeks and then one week off. There will be six cycles and these treatments will be done at Providence Cancer Partnership in Everett. I had blood work today and my white blood count had gone back up after going down the last couple of times. This made me very happy!

In the middle of the mind storm, 

optimism reigns.

                                                     - First line of my daily horoscope
04/13/11
I don’t have a lot of “mind storms” but there are some days when I think too much about my disease and have dark thoughts about my future. This quote will be a good one to keep in mind and refer to when I am feeling down.