Multiple Myeloma- Dancing In the Rain with MyelomaTeacher

I As I was driving down 95 South to Philadelphia on my way to the American Association for Cancer Research’s Annual Meeting I chatted with fellow advocate Marie Recine about last year’s meeting in San Diego. This was Marie’s first time attending the AACR Scientist- Survivor Program (SSP) although she was no stranger to medical meetings since she is a medical writer and a breast cancer survivor. It was my second AACR meeting.  I was very excited to have the opportunity to participate in the Scientist-Survivor program once again.   The mission of the AACR Scientist↔Survivor Program is to build bridges and unity among the leaders of the scientific, cancer survivor and patient advocacy communities worldwide. After last year’s meeting I made several new connections in the advocacy world, and decided to take steps to educate myself and become more actively involved in the world of research advocacy.  As an outcome of last year’s SSP I created a research advocate profile on the National Cance

Yesterday I learned  that one of my myeloma buddies, Brad, passed away. I only met Brad in person twice, but I feel like I have known him my whole life. Brad and I were virtual friends we met on Twitter and eventually became Facebook friends  (only special people make that transition from Twitter follower to Facebook friend) I tweet a lot and blog a little. Brad wrote an inspiring blog and tweeted a little. Brad would refer to me as " Teach". I loved that endearing term. It reminded me of my chosen profession, one that I truly loved.  In reality Brad was the real teacher.  Through his writing we all learned many lessons. Brad taught me how to stay positive, be a fighter and to find a way to make a difference. He also taught me the power of the written word.  I am not much of a writer, but I am going to make an effort to blog more, as a tribute to Brad. Rest in peace, Big Guy.  The world is a better place because you passed through.  You taught many what is really important.  

Twitter fascinates me. I started using Twitter out of boredom one day after I heard Hoda and Katie Lee of the Today Show suggest that people follow them on Twitter. At first I was very confused, especially with hashtags #s and @ signs. It takes awhile to learn to read a tweet! Then I realized  hashtags were a way to mark an important idea in a tweet and make your tweet searchable . I started searching twitter using different cancer related hashtags and kept stumbling upon #BCSM. I did a google search and discovered #BCSM stood for breast cancer social media. I decided that myeloma needed a hashtag too! Around the same time I saw a tweet from Dr. Thompson that sparked my interest. “@mtmdphd: Educate Pts & providers about new #myeloma clinical trials using social media – @mcccshine et al #ASCO13 http://t.co/Tf3UXGb36L #ASH13 #mmsm” I tweeted Dr. Thompson telling him I was ready to help him use social media to promote clinical trial accrual. That started the ball rolling for first Twe

Today I went to the movies with a good friend.  I always look forward to our girl's day out to see the latest flicks. We went to see Still Alice.  Although it was sad I still enjoyed the movie very much.  Julianne Moore definitely deserved the Oscar she won.  I'll write more about the movie in another post. Today I want to focus on how I know I'm in a better place than I was 6 years ago. Six years ago I didn't enjoy going to the movies.  Actually I dreaded going to them for several reasons. I had a hard time focusing.  My mind would wander.  If the movie didn't catch my attention  I would start to think about all that was happening to me and what my future would look like.  I would have a private pity party right there the theater without inviting anyone else. Focusing was not only an issue at the movies, I couldn't focus on reading a novel either. I would re-read the same page several times to try to comprehend what was happening, and if you asked me t

Six years ago today I had my stem cells re-infused two days after high dose melphlan chemotherapy was administered to me.  This high dose treatment which destroyed my immune system was suppose to get rid of my myeloma too.  Well things didn't turn out as we all hoped they would.  One hundred days post transplant my cancer markers were exactly the same as they were pre-transplant.  I achieved STABLE disease I was not in remission. I was devastated.  I thought I failed or did something wrong. Others who had transplants around the same time I had mine were being congratulated on achieving CR's (complete remissions). No one said anything to me. The silence was scary. I thought this meant the end of the road for me.  My induction therapy stopped working after four cycles and the gold standard stem cell transplant failed to put me in remission of any type.  My box of chocolates (what my myeloma doc calls my treatment options) was beginning to get picked over. Luckily the next tre

Dex is back in the mix.  My local onc feels that my numbers are trending upwards so he suggested we try adding some dex to see what happens and increase my velcade dosing back to once a week.  I agreed for now since I see my IgG numbers have increased by 50%. My IgG  from Labcorp was  876 mg/dl when I switched to a maintenance regime in March 2014. According to Labcorp my IgG was 1277 mg/dl at my latest draw on 1/30/15. My IgG numbers have increased according to my myeloma specialist's hospital lab too from 857 mg/dl back in March 2014 to 1158 mg/dl on 1/6/15 still within the normal range but almost a 50% increase. So now I need to find the answer to my question.  Is this showing progressive disease. I plan on asking my myeloma specialist buddies in the next few days about my IgG numbers.  Could they have increased by 50% because my immune system is finally recovering?  The 50 % increase still keeps me in the normal range. Maybe this is a good thing and not a bad thing. It'

Deciding to retire from teaching was the biggest decision I EVER made. I still think back on occasion and question my choice.  I do miss teaching. I miss the students.  I miss my collleagues.  I miss the wonder I saw in my students eyes when we explored science. I miss seeing the world through a 10 year olds eyes. The only thing I don't miss is grading papers.  I decided to retire because I knew I couldn't give my all to the classroom. I knew I would have to take time away from my classroom to have my treatment and visit doctors.  I knew that there would be days that I would have to go to school on a dex high or a dex crash and my students would have to deal with a less then pleasant  Mrs. C.  I knew that during cold and flu season my students would come to school sick and tell me that they didn't feel good as they proceeded to get sick over my desk.  I knew that my chemobrain would interfer with my ability to multi-task in the classroom. I knew that the old Mrs. C would be

I'm sitting the the waiting room waiting for an infusion room chair to open up.  It's a cold rainy snowy day. The kind of day you wish you stayed in bed.  The myeloma roller coaster is taking off once again. My m-spike and IgG numbers are slowly inching up, at least by Labcorp results.  My numbers from Mt. Sinai seem to be steady. So what do you believe?   My doctors disagree. One says stable disease while the other says I'm progressing very slowly. I guess it depends on which lab results you are following.  As a patient it's very confusing.   My husband always believes in the more positive results.  He still is somewhat in denial that I have cancer, even after 6 years. I tend to be more cautious.  I would rather work on the assumption my disease is slowly progressing and make decisions based on these results.  With that said, my new approach is to increase my maintence dose of Velcade from once every other week to weekly - 4 weeks on 1 week off ,adding a little Dex to

What does it mean to be a patient advocate? If you asked me that 6 years ago I would have no idea how to answer that question.   Six years ago I was newly diagnosed with myeloma and struggling to learn about this heterogenous disease and all the treatment options that would be available to me.   Six years ago I was quite a different person. Six years ago I didn't have discussions with my healthcare team or ask them questions when things didn't seem right. Six years ago I thought I would offend my doctor if I sought a second opinion. Six years ago I was an uneducated, uninvolved patient who blindly followed doctor's orders. BUT Six years ago I had the good fortune to attend my first IMF Patient and Family Seminar in Short Hills, NJ and things began to change. The IMF quickly taught me that "Knowledge is Power". Being a teacher I liked acquiring knowledge so I began educating myself about myeloma.   I attended IMF Patient and Family Seminars, listened to webc

One of my New Year's resolutions for the third year in the row is to blog.  I'm doig better this year it then in the past.  It's still January and I'm giving it a try. I guess I'm hesitant to blog for a few reasons. 1. I'm not much of a writer...math and science are my things.  I was plagued with the red pen death during my high school English classes.  Words like awkward and unclear were always on my returned essays. 2. I guess I really was unclear what a blog was suppose to convey.  Was it like a diary? Was it like a news report?  Was I suppose to write about my daily life or inner most feelings? 3. I never was one to share my feelings with others. I am pushing myself to begin to share some of my musings about the world. There I did it!  Blog post 1 for 2015!