Surviving The Worst Year of My Life (Part I)

autonomous patient, multiple myeloma

enBloom brings you another First Person Feature.  Vanessa M., a talented realtor, doll enthusiast and blogger shared her poignant story of diagnosis with a catastrophic illness and her subsequent fight to convene a team of physicians and a treatment plan consistent with her values.  To say Vanessa is engaged, empowered, equipped, and enabled is an understatement.  We are so glad she gave us permission to share her story once again (The original post was at her blog, Van’s Doll Treasures) right here.

First Person.  Today is the last day of the worst year of my life. I am sharing this story with the hopes of bringing inspiration, not despair.  This year I almost took my last breath on several occasions. July 2009, I was diagnosed with Multiple Myeloma.  It is a cancer normally affecting men in their 70s. I was 41. Essentially, your blood cells do not regenerate, and their growth decreases your ability to produce blood, which takes away your oxygen and your ability to breath. The only symptom I had was extreme fatigue for 1 week in June 2009. I thought it was diabetes, so I decided to go get a checkup. Voila, cancer!  It was pretty surreal, but I have never been afraid of death, so I think I took it fairly well. According to the oncologist, there wasn’t a cure. I could get treatment, but it would just ease my pain. Life expectancy 3-5 years. He suggested chemo, but said that it wouldn’t do much, but it might ease my pain. I declined. Why would I allow them to further poison my body, if it wasn’t going to help me get better?  I wasn’t particularly pleased with the negativity of my oncologist, so I did request a new one the next time I went to my primary doctor.

Vanessa in the hospital getting a bone marrow biopsy on July 27, 2009.

I turned to an alternative doctor, who was great. His treatments worked well for a while.  He was able to help with my breathing issues.  But sometime in late April 2010 I took a turn for the worst. I had a leg pain that just wouldn’t go away. It got so bad, I couldn’t walk without excruciating pain. I had always taken walking for granted, but I was slowly losing my ability to do so. And breathing was becoming a challenge. I would wake in the middle of the night and have to go outside just to get some air. I eventually started sleeping in my car, parked in the driveway, because there was something about being outside that made breathing easier. This was the scariest time of all.  Like I said, I am not afraid of dying, but I discovered that I am afraid of not being able to breathe. Those are two totally different things. Trust me!

Looking for Dr. Right

When I went back to my primary doctor, he discovered that my blood count had dropped to 5.9.  Normal is 12 for women and I think 13 for men. He couldn’t believe that I was still able to walk around. He suggested I move forward with a blood transfusion with the new oncologist he was sending me to.  He sent me to a new oncologist, who I discovered was in the same office as the last jerk.  Not good.  Turns out he was more negative than the first oncologist and very condescending.  He was practically calling me stupid for not taking their wonderful chemo injections.  I started believing that they were going to be making some big money if I chose to get chemo. There was no compassion to be had anywhere.  I asked about the blood transfusion. He refused to sign off on it and suggested I get my primary doc to do it.  He and I both determined that he and I were not a good fit. I haven’t seen him since.

My primary doctor was dumbfounded that the oncologist wouldn’t send me to have a blood transfusion. He gave me the necessary information to set up an appointment to have a blood transfusion.  I went to Eastside Medical Center, on my appointed day and time.  They checked me in and then asked for $2400, before they would proceed.  Turns out they were a private facility.  To this day, I still think the check in lady  read my insurance incorrectly.  Needless to say, I left there without blood.  I didn’t have $2400 just sitting around, and at this point, it was about principle.  I immediately went to my doctor’s office to get him to send me to Gwinnett Medical because they would at least bill me.  Well he couldn’t do that. His only affiliation was with Eastside Medical Center. He wouldn’t even come out to talk to me to offer any alternatives and I saw him just sitting in the back. The oncologists were the ones associated with Gwinnett Medical.

A couple of weeks later, I was talking to a friend of mine who happened to be a family doctor in Gainesville, GA (an hour away from me).  He told me to come there and he would take care of me and introduce me to an oncologist.  I took him up on the offer even though I wasn’t thrilled about driving an hour every time I needed to go to the doctor or hospital.  When he checked me out, my blood count had dropped to 2.6.  I was literally dying.  He immediately admitted me to the hospital for a blood transfusion.  Something my other primary doctor had not chosen to do.  While in the hospital the oncologist, came to see me.  He knew that I was not willing to accept chemo injections because my primary doctor had put it in my file. Since I was told by the other two idiots that there wasn’t really anything that could help, I was extremely surprised when he talked about a pill called Revlimid, where there was a 70% chance of remission.  REMISSION!!! No one had ever mentioned that I could go into remission!  I was thrilled. Apparently this drug just kills off the bad cells without touching the good cells.  That meant that I wouldn’t lose my hair or experience any of those other bad side effects that you have with chemo injections.  I left the hospital after 3 days (that is all I can handle) with a blood count of 7 after 4 pints of blood.  Keep in mind that 12 is normal.  But they really couldn’t take me up much more.  I was thrilled with my two new doctors. They both seemed to really care.  I knew my friend had my best interest at heart.  He cared whether I lived or died. (Continued in the next post.)

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Comments
2 Responses to “Surviving The Worst Year of My Life (Part I)”
  1. vanessamorrison says:

    Thanks so much for sharing my story. I hope that it can be an inspiration to others. Had I not listened to my inner voice, I do not believe that I would be here today, thriving. I often think back on the times that I could barely walk. Last weekend, for the first time, I got on the racquetball court and hit some balls. IT FELT SO GOOD! I was jumping up and down inside. I recently signed up for salsa lessons. I no longer take my legs for granted. I am going to work them like there’s no tomorrow.

    • This is what we strive to do. We cannot exercise our autonomy as patients without defining what we most value and how we personally define health. Showcasing examples of individuals like you who have done just that will only serve to encourage more patient engagement.

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