Help 2.0

Writing for help for myself and my family was one of the hardest things I have ever had to do, and yet one of the most rewarding. Friends, loved ones, strangers have been amazing to us beyond our wildest dreams. I was able to pay the mortgage for November on time and at the beginning of the month and I have to admit, I felt spoiled. 

I swore I would never ask for help again and I meant it...for me anyway. This time I am paying it forward and I am asking for help for someone else. A friend, a fellow cancer warrior, Ray and his wife, Bonnie.

I met Ray this fall at Gilda's Club. His face was ghostly white and he was extremely weak. The nurse in me did not like what I saw. 

I had a lot to learn about other cancers and stem cell transplants. Ray had a stem cell transplant on July 3rd (see his story below). He was extremely frustrated by how tired he was and everyone that had experienced stem cell transplants kept telling him "100 days," "it takes until at least 100 days" "100 days is the turning point."

I was curious. 

Outside of Gilda's, I had never known anyone who had undergone a stem cell transplant before, and I knew nothing about this "100 days." I watched and waited. Week by week Ray crept towards his "100 days" which he reached mid October. The transformation was amazing! The weak, pale Ray has been replaced by someone with color. He no longer looks like he needs someone walking next to him in case he gets wobbly. He looks stronger. To me it was an amazing transformation, but of course to him it is still a battle.

He isn't as strong as he was before, and he definitely doesn't have the endurance as before. He's at the turning point in his recovery where he is feeling well enough to get through the day without sleeping 18+ hours, but instead of being able to revel in that victory he needs to start planning his return to work.

Ray has been away from work and without income for much longer than he would have ever anticipated. The financial drain has been devastating. At a time when he should be getting ready for his glory years and building a nice little cushion, cancer has taken all of that and then some away.

We have commiserated about the pain and embarrassment of the devastating financial blows of cancer. I have stressed and stayed up at night trying to think of how to help Ray. So many people have helped us and set up fundraisers for us. People have sent us cards, gift cards, checks, and even cash. It has not only saved us from not being able to pay our bills (particularly our mortgage), it has reduced our stress 1000 fold. I want to do the same for Ray. 

Ray and Bonnie have had no fundraisers. They have had enough financial support from family to get through the month of November and then they don't know what they are going to do. This is a constant stresser for them and it should not have to be. No one should be going through what they are going through, esp. before the holidays. 

Help me give them the holidays they deserve (Ray was in the hospital through Thanksgiving last year and really deserves it). Give enough money to help buy a turkey, a tree, a gift, or to pay a bill. Give $5 if that is all you can do. As someone who as been in Ray's position I can honestly say that any amount, ANY is appreciated, and it does make a difference.

Just please help Share the care

Rays story (abbreviated) as told by Ray...

Between 1986 and 1994 I had three isolated plasmacytoma tumors, which is apparently very rare. Usually the disease metastasizes, at which time it is called Multiple Myeloma.  Plasmacytoma tumors are very responsive to radiation, so with each one I had a course of radiotherapy, which shrunk the tumors, and life went on.  After a number of years I thought that my cancer was all in the past.

But what I learned later is that radiation therapy can cause other cancers, which I should have known, but never really thought about.  Fast forward to 2012.  At that time I was seeing my primary care doctor regularly to follow high blood pressure and diabetes, with frequent blood tests.  There was something in my results he didn’t like or understand, as my blood counts seemed to be consistently a little low and getting lower each time.  So he sent me to a hematologist at UW for a closer look.  

It was April 2012 when I first met with Dr Longo, my hematologist. He immediately recommended a bone marrow biopsy (I had already had a few of those with the plasmacytoma tumors), which showed some abnormalities.  The diagnosis was MyeloDysplastic Syndromes (MDS), which is a whole group of disorders in the marrow, and which usually evolves into something more serious, usually leukemia.  There was nothing to be done immediately, but he wanted me to come back every six months for a repeat bone marrow biopsy, as he assured me that this would surely change at some point in the future.

So I was back in October 2012, and this time the diagnosis was Acute Myeloid Leukemia (AML). He wanted to admit me to the hospital immediately to begin chemotherapy. That was on Thursday, October 25th, but we talked him into taking the weekend to get some things in order before admission. So I was admitted on Monday, October 29^th, and expected to start chemo immediately. But there was a stage 3 clinical trial going on where I could get a different chemo drug, called Clofarabine.  (Actually not a new drug, but a new application for it.)  We decided to give it a go, and in the randomization I was selected for the new drug, a very lucky selection in my opinion.

So I started chemo on Tuesday, October 30^th.  The drug is administered for one hour each day for 5 days.  (By comparison the standard treatment is administered over 14 days, 24 hours each day.)  It all went very well, with essentially no side effects other than headaches.  Then I got a fever, which kept me in the hospital an extra 10 days, until the 14^th of November.  I had to return the following Tuesday, two days before Thanksgiving, for the second round of chemo.  These 2 rounds are called “induction”, and are designed to put the cancer into remission, which they did.  I returned home the following Saturday, the 24^th, to recuperate.

Two more rounds of chemo, in early February and early May, these are called “consolidation” treatments.  They reinforce the remission, and prepare the marrow for the transplant.  During these rounds I was still working.  I would go to the hospital in the morning for the chemo, then off to work for the rest of the day.

All this time they were looking for a donor for a stem cell transplant.  Neither of my siblings were a match, so they turned to the international registry of willing donors.  They match on 8 markers, and always try to find a full match.  But the best match they could find was a 7 of 8 donor from Germany.  The transplant was set for late April, but then this donor developed a medical problem, which was all the detail we could get.  That was apparently resolved, but he was unavailable in June, so the transplant was eventually rescheduled for July 3^rd.

So I was admitted on June 27 to start the “conditioning” chemo for 4 days, then 2 days of rest before receiving the transplant on Wednesday, July 3^rd.  There were very few side effects from the chemo again, I really got off pretty easy

It was July 23^rd before I was released from the hospital.  By that time I had started to grow new blood cells from the donor stem cells, and everything was looking very good.  I was tired – that doesn’t really describe the fatigue that comes from this procedure.  But all in all I felt pretty good.

In the months since then I’ve just been moving along the road to recovery.  There have been numerous symptoms, from the fatigue and nausea to a little bit of rash, to depression, especially as I ponder my return to the work force and a “normal” life.  There’s also been the worry over our financial situation.  I had expected to be back at work by now, but I just don’t have the energy to seriously consider that.  I have missed nearly six full months of work so far – November and December of 2012, plus July through October of this year.  Since I work as a consultant, and have no disability insurance, that’s also six full months without any income, and we were not prepared for that.

You can read more of Ray's words at his caring bridge site: rayjacksonmadison

Also, I plan to take photos of Ray and Bonnie and hopefully even talk them into a video this Tuesday at Gilda's. I'll post those as soon as I get them.

Finally, please help. They are wonderful people and you have no idea how much a little bit of your money adds up to be a lot of help for them. If all my Facebook friends or the people reading this blog gave $10.00 then they would have a few thousand to help them through this difficult time. I am literally begging you, another thing I will never do again. I thank you in advance.