Charolotte’s Story

Site created on May 12, 2018

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My story began 33 years ago when I was diagnosed with MGUS (monoclonal gammopathy of unknown signifigance) with an M spike.  The doctors tested me every year because the expectation was that at some point it would progress to multiple myeloma.  Well, many doctors completely ignored that part of my medical history as I started going from one doctor to another when my body began to break down almost four years ago.  Even my "raccoon eyes" didn't alert any of them or even raise any red flags.  In fact, other than trauma, there are only 4 reasons for spontaneous black eyes.  Every one of them is an emergency, yet at least 7 doctors simply ignored them.

So many things were going wrong in my body, but I just couldn't figure out what could be causing it.  I wasn't the only one who was stymied.  The doctors either had no interest in getting to the root of my problems, were too busy to pay sufficient attention, or were too distracted by the crush of other patients to invest the time and consideration to pursue a puzzle...MY puzzle.  I am not faulting them for becoming embroiled in their own lives and work, but I just wish they would be honest and tell people when the case is beyond them or just too challenging.  That would allow us to look for help elsewhere instead of continuing to wait and hope that they will provide the answers and direction for the resolution of our health issues.  I guess it is too hard for a physician to admit that a case either doesn't interest them or that it is beyond their knowledge.

After months of many emergency room visits and hospital stays, I finally ended up with Dr. Chakra Chaulagain, a Hematology/Oncology doctor at Cleveland Clinic in Weston, Florida,  who FINALLY diagnosed AL Amyloidosis.  He recommended that I see Dr. Comenzo at Tufts in Boston, as he had been Dr. Comenzo's Fellow and was seriously impressed with Dr. Comenzo's abilities.  He was more than right.  Dr. Comenzo is flatly amazing!!  And his team is just the very best!!!

I have been traveling to Boston, sometimes weekly and sometimes monthly for 18 months, getting chemo and a study drug and getting to know this brilliant team!  I now, unreservedly, put my future in their most capable hands.  They will do their best and I will do my best and everything will work out as it should!  When I am in Florida, I get treatments from Dr. James Hoffman with the University of Miami.  He was Dr. Comenzo's Fellow for two years at Sloan Kettering in New York.  Dr. Hoffman is also an excellent physician.  He told me that Dr. Comenzo has an intuition about stem cell transplantation.  He said his best advice was to do whatever Dr. Comenzo decided and not to push one way or the other as I could totally trust Dr. Comenzo's intuition.  Well...I am doing just that!  I accepted it when he said no but was thrilled when he changed his mind and came to believe that I should be an exception to the "not over 70" sort of guideline.  Thank you, G-D!  I have so much to do that I must get well enough to do it!!

Thank you all for following me here.  I hope to hear from you all.  Take care of yourselves and stay safe.  

Newest Update

Journal entry by Charolotte Raymond

Hello friends,

Well, here I am in the Neely House, which was established by Cam Neely to help those of us fighting cancer, amyloidosis and a childhood lymphoma.  It is a great place which supports patients beautifully. We have been here for about one and a half weeks and will be back and forth throughout the process of getting this transplant behind us.

On Saturday, I started with shots aimed at pulling the stem cells out of the bones.  It is of interest to me that no one mentioned the bone pain that  goes way beyond uncomfortable.  I had to use opioids to combat it, but, fortunately, got past it quickly. Sunday and Monday were the same.  

On Tuesday, we took stem cells for 4 hours.  We only recovered 1.3 million, a long way from the amount needed for a stem cell transplant. The process was not hard at all.  That afternoon, I got a shot which mobilized even more stem cells but caused no discomfort.  Wednesday was very hard.  They had to stop the collection 5 times because my blood pressure kept bottoming out.  I am retaining 12 pounds of excess fluid.  It was so rough I could not ambulate and needed a wheelchair both during the bone pain and during the aftermath of the collection.

Good news: They got enough stem cells fo do the transplant!! YAY!!!

However, today I am much better.  No bone pain at all.  Still moving a bit slower because of fluid retention but that is not unusual.  We will be delaying the transplant until my numbers, which jumped way up 2 months ago, come back into line.  Transplants work better when the light chain numbers are 50 or less.  Mine are at 77, had jumped up to over 90.  Another month or two of chemotherapy should pull those numbers into line.  

I was quite upset when I learned that I couldn't get the transplant immediately after stem cell collection.  So disappointed!!  However, since my experiences of the last few days, I realize that the Creator has rescued me once again.  I really need the time for my body to recover from the collection so that I can go into this challenge with as much strength as possible.

Thank you for so many good wishes and for reaching out to me throughout this process.  It means a lot when I get your messages of caring and support.  You are truly the best people in the world!  : )
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