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?

As Rosanna Rosanna Danna used to say . . .

It's Always Something.

You go in to get an MRI for pain in your lower back, worrying it’s something more serious than arthritis – another disc problem, a fractured vertebrae - and you find out there’s something else, something possibly even more serious than you ever imagined.

“Enlarged lymph nodes in the retroperitoneal area.” That’s what my doctor told me over the phone last night. I shouldn’t worry that this has anything to do with my previous stage one breast cancer. But I need a CT scan, a scan, which in her words “carries a significant amount of radiation.”

My doctor, Dr. S., is very conservative. She hesitates to order tests unless she is absolutely sure they are necessary. I’ve had this lower back pain for almost two years. With my original complaint she smiled and told me this is a product of aging, recommended I take ibuprofen when necessary and sent me to a physical therapist.

Then the disc in the upper thoracic neck area ruptured and I spent a couple of months on morphine and medical marijuana, masking any pain in my lower back as a bonus. Now I am blessedly free of pain from the ruptured disc, and off all the heavy-duty medications. But right on cue, the lower back pain has returned.

At my yearly check up a couple of weeks ago, I mentioned I still have significant lower back pain so my doctor scheduled an MRI to see what’s going on. The result came back – severe arthritis. This wasn’t news as the x-ray I had last year picked that up.

But then, the shocker: Enlarged lymph nodes in the retroperitoneal area. I go in for the CT scan this Sunday.

Rosanna was never more right.

I wrote this over two months ago,  I was thinking about posting it and then just became overwhelmed by what was happening to me or rather by the medical conveyer belt onto which I found myself inextricably thrown.

In the past two months there have been visits to Dr. K., the oncologist, extensive blood work, a lymph node biopsy and in between, blessedly, a trip to Europe, which had been planned for over a year to visit friends and family celebrating my brother-in-law’s 60^th birthday.  For those two weeks I was able to move fear out of my mind and focus on the moments of beauty in Vienna, the joyful reconnections in Berlin and in the back of my mind, hold onto the hope that these large lymph nodes were just remnants of a past infection from my days living in Africa.

Or . . .? 

But hopes and wishes rarely make correct diagnoses. This week I learned I have small lymphocytic leukemia and/or chronic lymphocytic lymphoma. The gist is I have lymphoma, cancer of the lymph system. That’s the bad news.

The good news is the pathologist used the word “indolent” – lazy, in no big hurry to do away with me just yet. And for now the only real symptoms I’m experiencing are being unusually tired (who my age isn’t?) and a whole new surge of what I’m calling ‘hot flashes’ – which may or may not be attributed to the node business. But I am, after all, years beyond those hormonal flashes, which we ladies of a certain age all endured to one degree or another. Whatever is causing them, they’re back.

Today I go in for my second CT scan, which will be used to stage my particular cancer. In December, Dr. K. will do a bone marrow biopsy to finish the staging.

In the meantime, I am working on platters in the studio.

Getting the wedged clay ready to roll into slabs.

Slab put on my makeshift 'mold'.

Platter with coiled handles drying into leather hard.

This is, after all, supposed to be about my life as an artist, not just my life as a patient.

But then, life has a way of drifting out of the lane just when you're sure you're driving straight ahead. No matter how firm a grip I thought I had on the steering wheel, this journey has just taken an unexpected turn.

And so the blog morphs into “my life as an artist who is, a once again, a cancer patient.”


Never more true, Rosanna. It's always something.

It's the Little Things That Count . . .

But Sometimes Big Things Make the Difference.

I’ve been looking for little things to hang my ‘I’m getting better’ hat on these days and have found several.

Victory!

The first came a few weeks ago as I was finishing my daily toilette – always with a spritz from my favorite perfume, Amarige by Givenchy.  It only takes not being able to use one of your hands to make you realize how much you normally use that hand on a daily basis. Being left handed, I was so thankful that my ruptured disc affected my right hand, thinking, quite foolishly, that it would be less debilitating when the right arm went numb and the right hand went weak. The first time I tried to press down on the perfume bottle’s atomizer, I was shocked that I couldn’t do it pressing with my right index finger. OK, so not a big thing, right. I mean, my left hand could take over that task easily.

But there were so many things I couldn’t seem to do using my right hand. Buttoning pants. Unclipping the dog’s collar while holding the leash with the left. Reaching for and lifting out the large granola jar from the right-sided cupboard. Even opening the passenger side door handle sometimes proved impossible. And forget trying to clip fingernails on my left hand! My grip was gone.

Still not useable with my right hand.

So every day since I’ve been off the meds and have felt no appreciable pain in my neck or back, I’ve tried the atomizer test. This would be the test to tell me if the nerve damage was temporary or permanent. The first time it worked I was so surprised I actually missed my wrist – not really paying attention to where I was aiming. But then the next day it was back to futility. All my trying to push down with the right index finger was for naught. My physical therapist said this was normal, sort of like trying to get your car engine started after it’s been sitting around for weeks. It takes several starts to get the spark activating the neurons in the nerve, which is still healing. 

Today, I can report that while I still don’t have the strength to clip my nails easily, my index finger is working brilliantly and daily in the push-down-the-atomizer test. It’s amazing to me such little things can bring so much satisfaction.

It also doesn’t hurt to have friends and family mention how good I look or sound now that I’m completely off all the drugs. (And I thank god for those good drugs, which apparently kept me totally unaware that I was looking and sounding that bad!) Just another little sign that life is getting back to normal.

But there are bigger signs such as taking back routines I had to forego because I couldn’t move without pain, like cooking, shopping, tending the garden, taking the dog on his daily walk or visit to the dog park. Can I admit it was sweet to hear folks at the dog park say they actually wondered where I’d been all this time?  They saw Obie with my husband but still missed seeing ME. We’re a strange but fiercely connected group of people who congregate with our pooches at the park. We notice when someone is missing. Still, I was truly flattered to be missed.

Obie at the Alameda dog park - on alert.

And then, of course, there are the bigger issues I must face besides how to apply perfume when dealing with nerve damage. As I wrote earlier, my biggest fear was that I would never manage to get back into the studio to do the work.

I am happy to say as of yesterday, I have been in the studio, not daily but at least twice a week for a couple of hours at a time. I finished glazing the three vessels I started before the cervical rupture on May 5. Scarlett’s piece is part of this group. They will all be fired this week. But more importantly, I have another commission, one that has me very excited and looking forward to starting immediately. My friend Tina came for a studio visit a couple of weeks ago and has commissioned me to create a series of serving platters for her. We discussed clay body, glazes, size and shape and possible surface decorations. I plan to do a small prototype first to give us both an idea of what might work, what not and what she will choose for her specific platters. Who knows, this might be a whole new direction for me. I’ve already had another friend mention she, too, might like a platter!

So, platters it is.

It seems like such a small thing, but when I stand back and look at how far I’ve come since May, it’s huge.

Ruminating Over Lost Time . . .

Or How I Came to Realize We’re All Born With an Expiration Date.

In the past two months I have only been to my studio to pay the rent and to water my ficus, which I have to say is looking extremely happy since I repotted it a while back. I am so looking forward to reclaiming this space as a working studio and not the glorified, extraordinarily expensive storage unit it became on May 5.

It’s been over two months since I woke up with a pain so excruciating I could barely get down the stairs, into the car and driven to the nearest ER. It took almost a week to get the proper diagnosis of a ruptured disc in the T1-T2 area of my neck (the ER doctor suggested I must be at the beginning of an onset of shingles and sent me home with a three page write up on the subject and a prescription for a strong anti viral medication). And then it took another few weeks to get the right pain medications to keep me, for the most part, 24 hours pain free.

At the time my doctor told me it might take 4-6 weeks to recuperate on my own, I couldn’t take it in. I was in the midst of finishing up a commission piece. I had the possibility of starting another. We had a wedding to go to in Chicago end of June. Flights and hotel reservations had been made. It was only the beginning of May. Surely I would be fine by June.

But after my first trip to the Spine Clinic where I saw the pictures of my completely herniated disc pushing the normally rounded nerve root to a flat line, there was the specter of surgery hanging over me. It seemed this might be the only way I could keep from having a permanent disability - the rupture causing my arm to go numb to the wrist and my right hand to lose quite a bit of strength. But after seeing two different surgeons who both suggested I let time do the healing, I began a self-imposed shut down of my life as I had been living it, all the while not knowing if time and inertia would really do the trick.

Physically, doing nothing was easy since by mid May I was so doped up on morphine, medical marijuana (that’s another whole story) and sleep medications, the days went foggily by. It was my mental impatience which made it difficult to accept the "doing nothing" as nothing more than a waste of time. 


All around me, however, others were "doing" for me. My very kind and thoughtful friends arrived to deliver delicious dinners, drive me to and from, and bring me flowers, DVDs, books on tape, even a box of new drawing pencils and gum erasers in case I got the urge. Visitors came by and I held court in our light-filled sitting room, me supine on the sofa with feet propped up slightly, eyes probably glazed over and they, sitting opposite, being all up beat and encouraging. At the time, I couldn’t keep a thought in my head and I could barely keep a conversation going. Looking back, I see all I really had the energy to do was to heal.

Now it’s mid July. I am totally off the morphine and mj and working my way off the sleep meds. I am pain free with only the occasional shoulder ache (which is how this whole episode started, me thinking I had just pulled a muscle). There is no residual numbness in my arm but I still have weakness in my hand. My physical therapist says this will be the last thing to recover. Regrettably, we missed the wedding in Chicago, but have been invited to join friends in Lake Tahoe this weekend.

I have to remind myself I've come a long way from the days not too long ago when if I manage to get 5 phone calls done in a day I was “doing fine”. Yesterday, I drove myself to my first voice lesson in months (where I found out not only can your muscles atrophy from disuse but so can your vocal chords!); paid a visit to my studio to deliver my sketching paraphernalia, water the ficus and have a nice chat with my building mate, Tyrell; and then  took the dog to the dog park.  I was completely spent by the end of the day but hey, I managed to do it!

I so look forward to getting back into the rhythm of my former life. And I especially look forward to reconnecting with my creative self, and reclaiming the "overpriced storage unit" as my working studio.

Who knows, maybe the next series I start will be touched with a new perspective?  No matter where my creativity takes me, it has become abundantly clear that unfortunately, at a certain age, our body parts simply start to wear out.

So in the end, sad to say, we are all merely fragile vessels with a finite shelf life.

Too bad the expiration date isn’t stamped where we can see it.