Feeling Downright Snow White-ish . . .

Or When Life Gives You Poison Apples, Make Apple Strudel.

Dreams are a wish your heart makes.

The season of gift giving is over and yet, as I take time to reflect upon the last few weeks of 2010, I am left to wonder about the meaning of “gifts” in general and what I have come to know about gifts in my own life, in particular.

According to the dictionary, a gift is something given voluntarily, without the expectation of receiving something in return. And if we are fortunate enough, some of us are given the gifts of talent or aptitude. And let’s not forget the legal definition of gift – “a voluntary transfer of property or of a property interest from one individual to another, made gratuitously to the recipient.”

I am pleased to admit over my lifetime I have been the fortunate recipient of gifts in each of these categories.


But in the past couple of weeks, I have received a gift that doesn’t really fit neatly into Webster’s definition. Of course, I was tickled with the sweet gifts from friends – chocolates, special soaps, meals made and meals shared, time together.  

Japanese ornament for 2010 from Jürgen

And I was especially delighted with the thoughtful presents my dear husband gave me for Christmas which included this beautiful Japanese ornament – our 2010 ornament – to add to our growing collection I place every Holiday season on our little Smith and Hawkins wire tree replica. It takes the place of the real trees we used to have every year my mom-in-law, Gerta, came to us for Christmas. Then, we always had a Noble fir with real honey candles, which she’d bring from Germany. We would light those candles every evening and each time we did, we’d say, “Now it’s really Christmas.”

Nowadays, I say that when I finish decorating this little tree.

Our Little Tree - 2010

But the one gift, which came disguised as a ‘poison apple’ is the one which seems to be the most profound on a deeply personal level. On December 17^th I went through a painful bone marrow biopsy, the results of which were used as a medical base line to determine the stage of my cancer (stage 4) and the prognosis (intermediate as opposed to good or poor). The lymphoma is, in fact, in my bone marrow and in my bones.

Dr. K called me with these results the week after Christmas. According to him and from all he had told me beforehand, this was not unexpected. So I took it in stride. After all, there is still apparently nothing to be done but wait for those pesky symptoms to show up – the night sweats, the fevers, the anemia, the tumors – before they will begin treatment (chemo). The plan is to see Dr. K. every three months for a physical exam and blood work and if after a year of these appointments, nothing has changed, I’ll see him every six months.

That all seems reasonably doable. I’m feeling fine physically except for the occasional backache and I'm looking good according to everyone who sees me these days. I can’t tell you how many times I’ve heard, “You look terrific!” in the past month or so. I think it’s not so much because I look terrific, but because I don’t look sick. But, all right, I can take that in. I look terrific! 


And until I see Dr. K in three months, I won’t have to think about having a terminal illness. In fact, lately, I’ve been thinking how we all suffer from a “systemic disease with no known cure”, as Dr. K so succinctly put it when he first described the type of lymphoma I have. The disease is called “being human”. Every one of us will die of something at some point. No one gets out of this life alive.

So that was that until the ‘poison apple’ came this week in the form of the final piece of information from the bone marrow biopsy. I have an abnormal gene formation, a trisomy 12, which according to my Google research, is a prognostic indicator of the disease. This was the test I thought I would decide to have or not and without knowing was already done through the biopsy.

The prognosis is not good. According to the percentages of patients with this particular abnormal gene, I will be dying sooner rather than later from the lymphoma. Of course, I could always be in the smaller percentage of those who live a bit longer, but then I could win the lottery, too.

Big inhale. Bigger exhale.

So here is the gift – the “Prince” I’ve found having taken a bite of this poison apple. It’s very simple. In fact, it’s my real “wake up” call – a real slap upside the head (not the gentle kiss promised) telling me, “Wake UP, you idiot! This is your life! THIS is the day you have. There is NO and there has NEVER BEEN a guaranteed tomorrow. Take this day and make the best you can of it. Whatever crap occurs, deal with it or not, but take what’s good of the day and be grateful for it.”

And that’s what I’m trying to do each and every day. I’ve never felt more alive, alert and engaged. My Snow White-ish days are over. No more singing “Someday My Prince Will Come.” 

My Prince "Today" has come and we’re going out on the town. Feel free to join us.

Like Alice Down the Rabbit Hole . . .

Or How a Day Can Go From Bad to Worse.

The phone rang at 12:15 PM. I picked it up immediately looking first at the caller ID number, not recognizing it right off the bat but assuming this was the call for which I had been anxiously waiting. Dr. K, my oncologist who was away from his office for several weeks and I had a “phone appointment” at 12:20 PM and I thought, hopefully, he might actually be calling a bit early as we had a lot to talk about.

It was not. It was Filiberto, our gardener, who wanted to talk about the next day’s work in our garden. I cut the call short, not wanting to depend on call waiting to let me know Dr. K was on the line.

From that point on, the day and I simply fell apart.

When Dr. K hadn’t called by 2 PM I called his office and after several tries to speak to a person, not just leave a message through the voice mail maze, I heard he was running 1½ hours late because of emergencies. If I had gone into his office and checked in, I would have no doubt been told he was running late, encouraged to go have a bite to eat, come back and check in later. But a phone appointment running late? Well, too bad. Didn’t the person who scheduled the appointment tell me this could happen?

No, but it didn’t matter if they had. Dr. K was unavailable until who knew when and I, waiting for news I pretty much knew wouldn’t be good, finally let go of all I had been holding in, all my fears, my frustrations, my anger at this latest diagnosis and had my first huge melt down. I fell sobbing into the arms of my dear husband who had been waiting with me to speak to the doctor. After helping me gain a bit of composure, he encouraged me to go to the gym and "work it out", which I did and it helped - a little.

When I went through my first bout of breast cancer, the only time I remember crying was before I had even been diagnosed. Three months after we were married over twenty years ago, I felt a lump in my right breast. When the surgeon who examined me said the word “biopsy”, tears began to flow, even though he said he was so sure it was “90% nothing to worry about”.

This being the third time I’ve gone through a diagnosis of cancer, I now believe the worst part is always in the very beginning, when nothing is certain except the fact that somewhere in your body, cells are growing haywire. When there is still no prognosis, no treatment plan, no idea what comes next, these are the most anxiety-ridden, the toughest days of all.

Which is why, when no phone call was forthcoming from Dr. K with this very information which I hoped would somehow put me at ease, help me get on track to fight this “indolent” disease, I fell apart.

Unfortunately, this time with this disease, which I can now refer to with its specific name, small lymphocytic lymphoma or as it is more well known - SLL, I will not have the benefit of any of these things, no prognosis, no treatment plan, no idea what will come next.

I learned this from Dr. K who finally called at 7 PM apologizing for the bureaucratic snafu. Apparently, since he didn’t schedule the appointment himself, which is how it is supposed to be done, he didn’t know about it until he heard I had left messages. But better than the 10 minute phone appointment I would have had with him in the middle of the day, he spent almost an hour on the phone with us, giving us all the information he could, that from the last CT scans, there are no enlarged nodes in my chest area (good news), but that this is a “systemic disease which cannot be cured” (not so good news). There is no treatment necessary until I have symptoms, i.e. night sweats, fevers, anemia, fatigue. How will I know when these symptoms are bad enough to require treatment? He had no real answer for that.

Jürgen asked all of the scientific questions about monoclonal antibodies and such. I took notes on this. Mine are: CD 5, CD 20, CD 23, BCL 2 - all positive (not good) but CD 3 and CD 10 are negative (good). He asked about a specific test which would more accurately tell if I have the gene which portends an early demise from this disease or not. Dr. K knew about this but I don’t think it is done routinely at Kaiser. And anyway, do I really want to know this in advance? Know that I might have only 5 years left as opposed to say 15? Not something I can decide easily or in a hurry. I’ll get back to you on that one.

So nothing from the phone call gave me anything with which I might forge ahead on a path to recovery, a plan of action, what to do while waiting for the tell-tale symptoms. All that I’m left with is this floating anxiety. And the knowledge that at any moment I just might have another melt down.

So where is that Cheshire cat with his magnificent grin when I need him?

Life Goes On in the Studio . . .

Or Doing the Work is the Best Medicine.

The platters are coming along. I spent a good three hours in the studio on Wednesday after going to the gym. I finished a prototype platter, the one done as an example for Tina so she can choose the glaze she’d like and if she likes the idea of inlaid porcelain slip or not. It’s now drying slowly before being bisque fired.

Leather hard platter with porcelain slip added.

Leather hard platter with porcelain slip inlay.

While I was working on adding the porcelain slip to the carved portion of the prototype platter, I had a visit from Judith who is doing an article for the first OSC (Oakland Symphony Chorus, of which I am a member since 2006) newsletter, SING! “SINGer Spotlight” is, to quote Judith, “a piece highlighting interesting chorus members, and we thought you would be an appropriate starter for this column.” Really? Me? I have a few intimate friends from way back who might describe me as “interesting” but chorus members? OK, so they must be going alphabetically starting with the sopranos. Well, no, Judith assured me otherwise, although they are starting with the sopranos. Anyway, she came armed with a camera and, hopefully, managed to get a decent photo for the column.

Leather hard platter with porcelain slip inlay on both sides finished.

I finished one of my pinched vessels now ready for bisque firing and decided, with the help from my studio friend, Tyrell, that I was also finished with the larger one. 

Leather hard pinch vessel with wax resist, carved pattern.

Other side of leather hard pinched vessel with carved pattern.

Sometimes you just have to see your work through someone else’s eyes to make these “it’s done” decisions.

Front side of large pinched vessel ready to dry.

Back side of large pinched vessel ready to dry.

And then a piece sitting on the shelf above my drying shelves caught my eye. I’d almost forgotten I had done this porcelain piece with desert blue glaze, which I glazed and fired recently.  It pleases me from every angle. More of these will come, no doubt.

Porcelain pinched vessel with desert blue glaze, carved, torn, coiled.

Another view of porcelain pinched vessel w/desert blue glaze.

Another view of porcelain pinched vessel, carved, torn, coiled.

Close up of carved, torn coiled porcelain pinched vessel.

One more view of porcelain pinched vessel.

All in all, it was a good day in the studio. If laughter is the best medicine, then my studio has got to be the funniest joke ever. 

Things You Hope To Never Hear From Your Health Care Providers . . .

Or If You Can't Say Anything Nice . . .

In the past two months I’ve had my share of appointments with doctors, physical therapists and radiology technicians and all I can say is somewhere along the way medical and training schools have definitely dropped the ball when it comes to what we used to call “bedside manners.”

Here are just a few examples of what, in my humble opinion, definitely could have been left unsaid.

When my physical therapist was studying films of my lower back and asking me about my symptoms and type of pain I was experiencing he said, “Well, considering what you’ve told me about your pain and how it is affecting your daily life and what I see here as the state of your back, you are doing extraordinarily well. I have other patients in wheelchairs with this type of lumbar situation.”

Like I needed to hear this.

Then there was my regular doctor who called me in the evening (you know it’s going to be something you don’t want to hear when they call you later than normal office hours, but anyway . . .) to tell me that the MRI she ordered for my lower back pain showed severe arthritis, nothing we weren’t expecting. But then she said, “It also showed you have some enlarged lymph nodes and so I’m ordering a CT scan to get a better look.”

OK, that wasn’t so alarming, but THEN she said, “Now you should know that I wouldn’t order this unless I thought it was absolutely necessary because CT scans emit a lot of radiation.”

Did I need to know the amount of radiation given off by a CT scan was higher than most radiological tests so there could be something else to worry about?  No. Or the inference that SHE was obviously worried about the enlarged lymph nodes or she wouldn’t be ordering the test?  No, again.

Sigh . . . and believe me, she’s always been the best when it comes to knowing what to say and what not to say. Hers was a mild gaffe comparatively speaking.

Much worse was the ENT (ear nose and throat) surgeon who called me in the early morning (before I was even out of bed so again, I was sure it was something I didn’t want to hear) with results from my lymph node biopsy. He wasn’t the doctor who did the actual surgery (he was out of town) so I guess I should give him a bit of a pass because he really didn’t know my case. But even so, do I really want to pick up the phone and have a doctor start out by saying, “I’m sorry but I have some really bad news”? And in the next breath say, “Are you sitting down?”  Luckily for me I was still in bed at the time, but CRAP! Is that what you want to hear at 8 in the morning, before you’ve even had coffee?

I don’t think so.

And lastly, there was the very chatty radiology technician who was administering the CT scan I had last Friday. Lots of banter back and forth while she got me up on the gurney before sending me through the radiation-zapping machine, and injecting me with an iodine infusion for one last picture. Then she made this conversational faux pas. As I was collecting myself thinking well, at least that’s over, and after she told me I should drink plenty of water to flush the iodine solution out of my overworked kidneys, she said cheerfully, “Well, we’ll be seeing a lot more of you here.”

What?

“Oh yes,” she continued, “You’ll be getting these scans pretty regularly. Oh and drinking all those yummy banana smoothies.” She was referring to the barium liquid they have you drink when they do CT scans of your stomach, intestines and bowels, which gave me a great case of diarrhea the last time I drank it. I was homebound for the rest of the day and evening.

When I balked at the thought of going through this on a regular basis and questioned why, she said, “You have lymphoma, yes? Well, CT scans are really the only way they can follow the progress of the disease.”

Well, didn’t that make my day? Just what I needed to know. The only thing that kept me from fuming about that for the next couple of hours was the horrendous traffic on the way home from the medical facility. Mental road rage took over.

My dear mom used to say this but in a much more genteel way. Here's my version: If you can’t say anything nice, why not keep your bleeping mouth shut?