Sunday, June 7, 2015

And So It Begins...

                                Or Here Comes the Trip I Wasn't Expecting to Take.
I had a second opinion appointment with Dr. N, a former professor and researcher in the area of leukemia and lymphoma, who just arrived at Kaiser to start a Leukemia/Lymphoma Center at Oakland. I feel very confident that his explanation and recommendations are the way to go. But (of course) I must mention a few things which put a smile on my face.

The last time I had my height measured, a couple of months ago, the (apparently inept) nurse/assistant (I think they have to convert centimeters into inches) said I was 4'10"!!! Now, I know I'm short (originally at the height of my height I was 5'2") but up until then, I thought I had only lost 2" as my spinal disks have collapsed substantially. But I had a wonderful new nurse who wanted to measure me again and guess what?? I grew 1 1/2" since the last time and now am 4' 11 1/2" - HooooRaaay!!!  Yes, it's the little things that make my day - most of the time. And no, I didn't have my shoes on.

Then Dr. N, after many, many questions and a thorough perusing of my record sat back and said, "Well, I can honestly say your situation is unremarkable."  And my first thought was, "Boy, this medical stuff has it all backward. If you're told your test has come back "positive" that's a bad thing and being told you're "unremarkable" is apparently a good thing." What's with these doctors?

But the best part was being shown the pictures from my PET scan. What an incredible view of one's body, slice by slice. I was shown where all my enlarged lymph nodes are and the fact that they were all a very mild ochre color (good) whereas the point on my arm where they injected the radioactive glucose was like a hot white (expected).

Note the lymph nodes on the right are gone - removed 25 years ago when I was diagnosed with breast cancer.

Also, I could see other organs, all looking fine according to the doc and where the fluid is filling this and that cavity, not so good. But then I saw all the way up to my brain where there was an explosion of hot white!! OY!!! My first thought was, Good grief, do I have brain cancer? But then Dr. Nguyen explained that just showed my brain was actually working. OK, then. Whew!
Note the right side of my brain is definitely larger than the right - not surprising.

Now the regimen begins.  First, I attended a Chemotherapy class where, for one and a half hours I joined a few other patients for a power point presentation given by an oncology RN of what will actually be happening in our bodies and what to expect. 

There were a couple of things I learned that threw me for a loop – not that I might be nauseous or even more fatigued (not sure how this is possible) which I was expecting – but,

1. I’ll have to drink EIGHT – TWELVE glasses of water/liquids a day in order to flush away the toxins which supposedly will be accumulating in my system as the dead cancer cells pile up. I’m already hydration-compromised. If I manage to drink a few glasses a day, that’s a lot and keeps me running to the bathroom more than I’d like. Drinking 8 glasses? I might as well just set myself up in the bathroom with my iPad, iPhone, a couple of books and maybe my knitting and plan to spend the day. And

2. Since the chemo will destroy my immune system, I must be very careful not to be in crowds or around people who are sick. This comes at a very inopportune time, what with my new work being shown in the Be Gallery opening in Berkeley end of June. How can I expect to attend the Grand Opening when I’m expected to shun crowds?

Nesting 111
On the Edge of Infinity

And then there are my tickets to the Oakland A’s games!  I have another 4 games to go to before the end of the season, the next one coming up in a couple of weeks. Well, at least they are outdoors. I could take my handi wipes, try and sit closer to the aisle, and maybe just wear a mask if I need to? 

Tomorrow, June 8, I go in at 9:00 AM (adding insult to injury! - those of you who really know me will understand) to start Rituxan, the first of two different drugs which is given very slowly. I'm scheduled to be there for 6 hours (knitting/reading/napping)! The second drug, Bendamustine, will be administered partially then and the next day in the afternoon and should only take an hour and a half. 

This regimen will be repeated every 28 days for 6 months. The hope is I won't have any dire side effects. If I do, they'll stop, of course. I shouldn't expect to lose my hair but it may be likely that I'll feel nauseous and become MORE fatigued. I renewed my medical marijuana card, purchased a couple of edibles and am ready to handle the side effects with a little natural help!

But here's the kicker:  What Dr. N explained in his professorial way is while this  chemo combination should put me in remission (it will shrink my lymph nodes) for a good long time (SLL can't be cured), there is no guarantee it will totally fix the fluid build up because my lymph system may now be compromised, and this may not heal the places where the fluid is leaking out. Sigh...

Otherwise, I'm still trying to take each day as it comes to me. Really, it's all any one of us can do. I am blessed to have a husband who is totally supportive and here for me. And am also blessed to have so many dear friends who are stepping in and giving us a hand when we need it.

Right now, I'm just trying to conserve what little energy I have, not planning to do too much or anything I know will be exhausting.

Easier said than done.

Tuesday, May 19, 2015

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

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

            photo 7ae16aa7-9200-49ce-99aa-ed9f8007f744_zpssk7rywgt.jpg

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.