Saturday, February 20, 2016

My Dark Clouds Always Have Silver Linings...

Or Even the Lousiest Day Can Have Some Good News.

Almost exactly one year ago, I was mistakenly diagnosed with pneumonia and started on a medical journey which has brought me to this revelation. This very dark cloud which has hung over me for the last twelve months does, indeed, have many a silver lining.

First, I managed to weather the worst of the IV chemo side effects so that I could plan on being down for the count (extreme fatigue and nausea) the first week or so after the two day drip. Soon after week two, I was able to get into the studio and actually work, at least the last week before the next drip when my energy levels were almost normal. I didn’t get to any more A’s games but I did have some lovely visits with friends who came by with all manner of treats - including desserts, three course meals and most importantly, their upbeat encouragement. 

Berry Galette from Alice
Cauliflower cheese pie from Tyrell
Raspberry Linzer Tart from  Sydney
Then, more Good News came from my dear friend, Ricki, landscaper extraordinaire, who spent a day planting a lovely bunch of veggies in our raised garden bed. I managed to get in 3 new tomato plants before I went down. But Ricki put in squash, purple peppers, tomatillos, and cucumbers! What a treat! 

Our lovely raised bed with Ricki's beautiful plantings.

But even more Good News came in the form of dog walkers. Our dog, Obie, needs a good long walk pretty much every afternoon. And while I was at my most incapacitated, my dear husband, Jürgen was relegated to walking him 3 times a day. When I’m well, I usually take Obie out in the afternoons and just before bedtime. So up came our wonderful neighbor Alice (who also brought some really delicious treats) and took Obie every Sunday afternoon on a long walk with her dog, Vyvyan. The two of them became best dog buds. Soon, every Saturday my dear friend Scarlett came by to walk the Ob. And filling in when it was just too much for Jürgen, sometimes two or three times a week was our regular dog walker, Heidi Bendorf, who was so very gracious and generous with her time.

Sadly, adding to our dark cloud was the death of my dearest mom-in-law, Gerta, who passed away in September in Germany. The only silver lining was the timing of the funeral which allowed Jürgen to go back to Berlin while I was two weeks past my August chemo and could manage to be alone with help from friends. Still, it was a very disheartening time.

Soon after my last chemo at the end of October, I began to wonder how I was going to thank all these wonderful people who stepped in when we needed them most. By then I had enough strength to work regularly in the studio. And, voilá! The work started to flow out of me. 

Sixteen pieces glazed and ready to be fired.
The pieces glaze fired and ready to be gifted.
I was thrilled with the results and only hoped my dear ones would be as thrilled to receive a small token of my deepest appreciation for their amazing good-heartedness.

Unfortunately, another huge cloud came over me at the end of November when I went in for a CT scan which we all hoped would show the enlarge lymph nodes had shrunk and I could be pronounced in remission. This was not to be. Instead of 50%-100% smaller, they were barely 20% smaller than before I started on the chemo.

This didn’t dampen our Holidays in December, as we were invited to a lovely Chanukah latke party at our neighbors, Sharon and Jim. They had another interesting couple there, Iliana, textile artist, her husband, Steve, and Sharon’s sister Jackie. It was such an enjoyable evening, one of the first social engagements we were able to attend since I had started chemo in June. And then we went to the Break Bread concert to hear the Oakland Symphony Chorus perform along with a stage filled end to end with other choruses and the Oakland Symphony Orchestra. It was such a boost to see so many of my dear chorus chums before and after the performance.

Break Bread Concert December 2015 at the Paramount Theater

But after we rang in 2016 very intimately with a quiet evening at home, we had to decide what to do next, medically speaking. In order to deal with my enlarged lymph nodes and the increased fluid which had now settled mostly in my abdomen, my oncologist gave me a choice of several different chemo regimens. The one he thought would be the most effective and the least disruptive is a drug called Imbruvica. It’s in pill form and I began taking it mid January. I will be taking 3 pills once a day for at least 3-6 months. The major side effects I’m having are extreme fatigue and acid reflux.

I started taking the pills first thing in the morning which meant that anytime between 1 PM and 3 PM the fatigue would hit me so hard I couldn’t keep my eyes open and I would be done for the day. This kept me from getting behind the wheel and driving myself anywhere because I couldn’t plan on being awake in order to drive myself home. So again, I had to count on the “kindness of strangers”  - really, on my husband and dear friends - to schlep me here and there. 

Not what I wanted to continue to be - dependent. 

But just a few days ago I had a Great Idea! Maybe I should be taking these pills right before bed so the fatigue will hit me while I’m already asleep? This is exactly what’s been happening! I’m getting a good night’s sleep and find I’m not as tired during the day. Sometimes I have to pat myself on the back when I realize just how brilliant I am


Every time I take one of those pills, I talk to it and say, “Get in there and do your job!” I’ve also begun to see an acupuncturist and have started on a meditation program - POEM: practice of embracing each moment - offered by Kaiser to help cancer patients on chemo with the side effects as well as over all anxieties. As you can see, I'm doing what I can to keep those dark clouds from darkening too many of my days.

Here's what I know now: Every day has its Good News. There’s always something which will
brighten the sky, make you smile, make you feel you are on the right path to good health, that you are in the best of hands, that you are loved. 

All you have to do is look up.

Believe me.

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.

Sunday, September 14, 2014

Seeing My Work Through the Eyes of Others . . .

   Or Who Needs Google Glass When You Have Friends? 

Sometimes the hardest thing to do is to really look at your work objectively and see it with “new eyes”.  I don’t seem to have that ability all that often. But not to worry. I have friends who are willing not only to look at the work but also share their opinions with no compunction or regards for my feelings. That said, I must admit when I can, I do take in the various unsolicited critiques and try to see the work as they do. Here are just a couple of examples which have been sent to me in the past few months about my newest pieces.

Beka, a woman who found my work by Googling “porcelain pinch pots” and is on her own journey playing in the mud, recently wrote,

“I like things that look like they could have been found outside - that's what makes your 'eggs' so appealing and wonderful to me; they'd make the heart stop spotted amongst leaves and mosses in the woods, or washed up in a tangle of seaweed at the beach, but wouldn't be at all out of place there.”

Now that made me smile. But did I ever think about my work buried in a mound of leaves or mosses out there somewhere in the woods? Or being tangled up in a heap of seaweed along some lonely beach? Actually, no. But Beka’s imagining these settings has moved me to think about them as well. And now, looking my newest pieces, this imagining seems to be manifesting itself more and more in their rough exteriors juxtapositioned with the flowing, organic glazed interiors.

Skyscape Revealed

And then there’s my old friend from my Peace Corps Days, Ed, a published poet who lives in upstate New York. Over the years, he’s graciously sent me books of his poetry so this year, I sent him this small piece for his birthday in August. It took him almost a month to write a response (I’m not sure I should call it a “thank you”). 

Leopard's Lair

It starts,

“I’ve been trying to account for the strange “object” you sent me - a seemingly fragile, broken thing that resists categories. . . “

And then, of course, he continues to try and categorize -

“It’s not a bowl or a cup, or anything that lends itself to utilitarian purposes, even though it suggests that it might have been once... if it was, it’s more like a teacup a traveller in the desert might use, something that needs to be placed in the sand, not on a hard table, because it lacks a bottom (is bottomless) & seems more suitable to a nomadic existence, for packing up and carrying away...”

OK, I’ll buy that, but here comes the real complaint:

“Because its edges are rough & serrated, I can’t drink from it in its present condition without running the risk of cutting my lips and tongue. It fills me with thirst & quiet contemplation: dread & desire. It’s very much like a “bitter cup” that way.”

So did he really want a nice utilitarian cup or bowl? He goes on to liken it to a “shell of some prehistoric bird” or “ostrich fossil”, or “an ancient abandoned seashell”. And then there’s a serious attempt to describe the color, inside and out -

“an eggplant on the outside, but inside it hints at some pyrotechnic process with sparks flying, bubbling magma exploding & lava-floes flowing. Something like an antique alchemist’s athanor (I had to look this up - a self-feeding digesting furnace) in the search for secret elixirs, or the formula for the transmutation of lead into gold.”

Then he lets me know he hasn’t just dumped it but actually has put it somewhere where he sees it regularly, even though it seems he doesn’t really see anything even remotely close to what I had titled it - Leopard’s Lair.

“It wobbles on my desktop like a shattered world, a melancholy little planet where past struggles are spent . . . emerging through sacrifice & fire & cracked beginnings into an unimaginable tomorrow, perhaps in the triumph of joy & hope.” 

Well, OK, at last a few optimistic words.

But in the end, finally and thankfully, I think he gets it.

“It demands a place of its own; it refuses to be pigeon-holed. In a word, Bobbie, it is YOU!”

YAY! Yes! Exactly what I’ve been after with all my work - the mirror of my life as a vessel!

Now I can go back, reread the descriptions and see myself/my work through the eyes of a dear friend who may know me even better than I know myself.

Thank you, dear Ed. As you so aptly PS’d:

Like Leonard Cohen says...: “Everything is cracked - that’s how the light gets in...”