Re-birthday for Myeloma Survivors

What the heck is a re-birthday anyway?  I can imagine many people saying it’s just another excuse for a celebration and presents.  For me it’s a very personal celebration, one that Sarita and I appreciate with bittersweet memories, although I have a hard time remembering the date, because on that date 3 years ago, my mind was only half there…

We had done a lot of preparation for the bone marrow transplant, or stem cell transplant as it is often called.  I was terrified to go through this process, because I knew that the point of it was to practically kill a person in hopes that the cancerous cells in the bones would mostly die,  and then they could have a fresh start with new stem cells that did not have cancer. I had to go through tests on my heart, tons of x-rays on my lungs, breathing tests, blood tests where they would take over 15 vials of blood, classes on the procedures I would have to go through, consultation with a nutritionist about how to eat, and on and on.  Sarita patiently took me to all the appointments, learned how to give me injections, waited while I had my tests, and talked with me to all of the many doctors, nurses and technicians I had to see.  We had to arrange to move to Mountain View for a month so that we could go into Stanford every day, we had to find someone to live at our house with our dog during that time, and we had to arrange  two surgeries for my back, so that I would not have to wear the back brace as well as the hepa mask during the whole thing.  I did not want to be helpless to that awful back brace during such a difficult time, and since most people going through this “outpatient” procedure at Stanford ended up in the hospital for a while,  I did not want the repeat experience of being in the hospital and unable to take myself to the bathroom.

The only test I actually failed was the breathing test, because I’d been wearing the back brace for so many months that I’d learned to breathe shallowly, and I couldn’t breathe deep enough or hold my breath long enough to pass the test.  Plus the technician at Kaiser was totally freaked out by my back brace, and was not very flexible. So I played harmonica to strengthen my breaths, and re-took the test at Stanford, where they were much more lenient, and I passed. Phew.

My back surgeries went pretty well.  My spine was collapsing so badly, that I had to have “vertebroplasties” which are when they put a very hard agent called “cement” between the vertebrae so they are kept in place. They didn’t put me all the way out, so I could feel the doctor pounding the “cement” into my back, and it hurt.  They can only do 3 or 4 in one operation, so I had to have two because I needed cement between 8 vertebrae.  After the first operation I asked if the doctor could use more sedative because it had hurt so much, and he said no, not unless I wanted to die.  Okay then, pain it was.

Winona, my daughter, the only other person my dog likes, consented to living in the house while we were gone, thereby solving a huge problem.  We will always be grateful for that.  We found a motel with a kitchenette that cost less than Kaiser was willing to pay per day, and it was about 15 miles from the hospital.  I commuted down to Stanford to get the port (or whatever it’s called) put in my chest, and to get my heavy duty chemos before the transplant.  I had a two day hospital stay for each of those chemos, but then went home.  Interestingly enough, Stanford usually does three chemos before the transplant, but the one in the middle was one I’d heard other hospitals did not do, and it was a really rough one.  I’d asked my doctor if we could skip it, and he said no.  But when the time came to do it, the whole country had run out of that chemo, since it was an older one, and there was no profit in making it anymore, and thus only one place made and distributed it.  They’d had one batch not work (for some reason), and got behind, so it was completely unavailable for an unknown length of time.  We were on a bit of a timeline because of wanting to be finished with the whole process so that we could have a week or two in New Mexico before Sarita went back to teaching (which is what I was living for), so I asked my doctor again, could we skip it?  This time the answer was affirmative.  Sarita always said my wishing things created magic in the world!

One big final thing had to be done after the chemos and before the transplant — we had to have my stem cells collected.  For multiple myeloma, most people use their own stem cells after all the chemo and hopefully all the cancer cells are dead. This was in April, and Sarita had organized our family and friends and some school folks to walk in the multiple myeloma walkathon on a particular Sunday.  She had designed t-shirts for our “team” which were a beautiful spring green, with a logo of one of my tattoos on it.  Suddenly, we found out that was the very day I had to go in and have my stem cells collected.  Our wonderful team went on without us, although we wore our shirts to the hospital in support.  We were sad not to go (although I was probably going to have to be in a wheelchair much of the time), but glad to get on with the process.  Happily, they got enough stem cells in that collection, because later when I went to give again for “just in case they needed them,” I did not have enough.  Not even the shots I got for days and days to stimulate my body’s creation of stem cells worked anymore.  That was a little scary.

So we moved into the motel with Sarita’s drawing tablets, our guitars, our blender, the laptop and a few clothes.  We went to Stanford every day.  I was wearing a hepa mask whenever I was out in public, and I looked like an alien from outer space.  Really.  It was pretty awful, and I was also still really sick from the chemo.  About five days after I received my own stem cells on May 25, I spiked a bit of a fever.  Basically I had no immune system whatever, all the vaccinations and immunizations I’d ever had were kaput, and I had nowhere to go but down.  So they put me right into the hospital.  I was in a fog.  I slept, I remember there was a stationary bike in the room that I was supposed to get on every day (but I don’t remember getting on it), I woke up when people came in to check on me (and there were big groups of doctors and students sometimes… one doctor used to joke with me and I remember joking back, but later when I met him again, he was hurt when I couldn’t remember him).  Mostly I remember Sarita sitting over in the corner of the room playing the blue guitar I had bought which she was teaching herself to play.  That was incredibly comforting.  My room was in a ward with other transplant patients, but we were all in private rooms and fairly isolated because of the immunity problem.  Once in a while I would take a walk around the nurse’s station.  I have to say, Stanford was a pretty nice hospital to be sick in, but the whole thing was kind of vague for me.  I was there for 10 days.

After that we went back to the motel, where poor Sarita had to badger me to eat and drink every day.  I was not interested in either, and especially hated the vitamin smoothie drink that I was supposed to have to make sure I was getting what I needed, since I wasn’t allowed to have anything that was not cooked or canned, and I was throwing up all the time.  In fact, I started having trouble seeing about then, because a big black spot appeared from where the retina became damaged from throwing up so much. I slept a ton.  Sarita forced me to walk outside every day, we watched TV and movies on the laptop, I played a little guitar, and as I got better, we went out on short shopping excursions in the Palo Alto area.  She needed clothes for the starting of school, so we found REI, the Vans shoe shop, and other such places.  I always had to wear my mask, and was afraid of getting sick in the stores, but it was good to be out of the motel room.  I will say, it was an incredible bonding experience for us.  The only times we had that were difficult, was when I was being stubborn about eating or drinking and she knew she had to make me.

I never thought I would live through it, but I did, and now when May 25 comes around, and it is considered my re-birthday because my whole body nearly shut down and had to be re-booted, I realize how lucky I am.  Lucky enough to have had the opportunity for this procedure, lucky to have my incredibly dear Sarita, lucky that I have now had 3 years of life since that time.  And although I told Sarita at that time that I would never do that again, I now have said that if I had to, I’d do it once more if the doctors thought it would give me more years of living.

When we were able to check out and come home, I still had to go to Stanford for checkups, and blood tests, and warnings that my kind of cancer comes back, so be prepared.  But Sarita and I were able to go to one Bone Marrow Transplant Reunion, where we met and saw people who have lived 5, 10, 15, 20 and I think even 30 years past their transplants.  It was truly inspiring, and hopeful.

At that reunion, people spoke about their experiences and Sarita and I sang the song I’d written (with her help) about what we’d gone through with my cancer.  The bridge tells all about the transplant part:  Now I’ve got a whole chestful of tubes, and miles of tape stuck to my boobs, and I’m throwing up in containers everywhere.  I’ve got a hepa mask to keep the germs at bay, but I’ve got a good woman who loves me anyway.  One thing I’ve learned about living, it’s all about love.

We don’t celebrate a lot of holidays.  Christmas is a favorite, and each of our birthdays takes a whole month to celebrate, and once in a while the solstices.  But the re-birthday is at the time when spring is getting ready to become summer, and when I remember that I am still alive and retired and pretty much get to do what I want, and when Sarita and I remember that experience that was unlike anything else in our lives.  I hope this is a holiday that I get to celebrate for many more years.

 

In case this link doesn’t work, my song is on Soundcloud, at CaseyWayland, and it’s called, “Enough to Make Me Happy”

 

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One thought on “Re-birthday for Myeloma Survivors

  1. Sarita Johnson

    This experience was one of the most frightening I’d ever gone through, but I am so happy that I went through it all with you, my love!

    Reply

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