Tuesday, May 19, 2015

Stop Me If You've Heard This Here Before...

          Or Once Again, Learning to Live with the “New Normal”.

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About 4 ½ years ago, after having an MRI because of lower back pain, my doctor noticed that a few of my lymph nodes were enlarged. I was diagnosed with small lymphocytic lymphoma, a medical determination found after the biopsy of an enlarged lymph node in my neck. My oncologist at the time assured me this was the best possible diagnosis as SLL is considered “indolent” or very slow growing. I hung onto his prognostication that I would probably live a long life and die of something else before this disease got me.

Since then, every 6 months I have my blood tested, making sure this indolent cancer is still snoozing and so far, it has been blessedly quiet. Since then, my life has been filled with travel to exotic lands; exhilarating concerts sung with the Oakland Symphony Chorus; delightful days and evenings spent with dear friends and family; and many, many creative days and weeks working in the studio.

But since January of this year, this has completely changed. The first symptom came in the cold, dank, grey Berlin winter where we went to celebrate my mom-in-law’s 93rd birthday. It began with finding myself short of breath climbing 3 flights of stairs up to my in law’s flat and sometimes even bending over to fasten my boots. Then just as I was getting ready to fly home, I succumbed to the horrific cold, which felled every single family member in the flat before it got to me. I came home with the hacking cough, fever, and shortness of breath. 

The first diagnosis was pneumonia and I was sent home with a course of antibiotics and told to rest. But after a week of rest, which didn’t help my breathing, my doctor said she saw fluid in the pleura of my lung when she looked at the x-ray and thought I should have it drained. That would certainly help with my inability to breath. And eventually, she felt this would resolve itself.

That was end of February. Since then, I have had 3 x-rays, 3 CT scans, fluid drained from my pleura twice more. The fluids and my blood have been repeatedly tested for every possible disease, including Lupus, TB, Rhumatoid Arthritis, and every test has come back negative. I’ve seen my GP, my oncologist, a pulmonologist and an allergist, none of whom can say for certain, what is causing this continual build up of fluid.

After the last CT scan where they found more enlarged lymph nodes in new areas of my body, they are speculating my “indolent” lymphoma may not be so “indolent” anymore.
So I’m scheduled to have a PET scan tomorrow. This will supposedly allow the doctors to see more definitively what is going on in my body.

Since leaving for Germany in January, I haven’t had enough energy to sing with the chorus and so, missed performing Bernstein’s Candide last Friday. I haven’t had enough energy to go to the studio except to pay the rent, water the Ficus and finish up glazing a few pieces made last year. 

New Nest 1

New Nest 2

I basically find I only have the energy to do one thing daily and sometimes, not even that. Depending on what that one thing is, my energy can be completely gone for several days after. This happened after we went with friends to the Bouquets For the Arts exhibition at the De Young Museum mid April. It was a fabulous event as it is every year and I was SO happy I was able to attend.

But that was it for the next few days. So here I go again, having to deal with a “new normal” almost every day.

But in the end, isn’t that what life is really? Every day - a new normal? We can make all the plans we want, but life, more often than not, has different plans for us. 

All we can do, then, is try to roll with the punches even when they keep on coming. All we can do, really, is realize that today is the day we have. Yesterday is done. Nothing we can do about that. And there is no guarantee there will be a tomorrow.

So today is it. No matter whatever it brings, there is always something to be grateful for. Today, I have so very much to be grateful for:

I’m here. I woke up and put my two feet on the floor without anything hurting. I have the dearest treasure of a man as my husband, a dog who delights me daily, a beautiful home in a wonderful neighborhood, many dear, dear friends and family whose love and support are with me as I travel this new path, and a terrific group of doctors who are taking good care of my health. Today, the sun has come out. Our first hydrangea has bloomed. I’ve picked lemons and artichokes from our garden. 

If this is my “new normal”, I think I’ll be OK.

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