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Archive for April, 2010

Hand-and-Foot Syndrome

Posted in Journal Entries, tagged , , , , on April 24, 2010| 5 Comments »

Well, I can’t quite believe I’ve gone 10 days without blogging! What’s up with that?

Truth be told, I’ve been back on the roller-coaster of feeling good one day, crappy the next, terrible the next, then somewhat okay again…only to start the whole process over in some variation of the theme.

I’m sorry to have to admit that I’ve begun really struggling with the mounting side effects of chemo. I was sorting through a big pile of prescription info a few days ago and came across one for Xeloda. I decided to actually READ the list of side effects printed on the Walgreen’s info sheet (okay, I know, I should have read these months ago…but all the doctors and nurses kept telling me what to look for, so I skipped that particular homework). I was a little shocked to read this:

Xeloda Side Effects

The reason I was shocked is that I’ve experienced every single one of the side effects listed here! And I’m not “80 or older” either! Granted, some of them have been worse than others (the “hand-and-foot syndrome” is currently the most problematic for me, closely followed by “tiredness, weakness, dizziness, headache.” But I can put nausea and vomiting at the bottom of the list, thankfully).

A well respected acupuncturist, Leah Fineberg, who attends the same yoga class I do (she’s been across the room from me for a couple of years, but I never really got to know her until recently) offered to work with me to try to alleviate some of the side effects. I had my first appointment with her last week. It was also my first ever acupuncture appointment, so I was a little nervous. She immediately put me at ease by saying she might not even use needles on me during the session, but after checking my pulses, she said she felt I was strong enough for a few “baby needles.” I was pleasantly surprised that I felt nothing more than her soothing presence when she inserted a number of needles in my back along either side of my spine. A little later she put some in my feet and, again, I felt no discomfort. In fact, the entire session was very relaxing. But she impressed me the most by the research she had done before I arrived. She’d looked up “hand-and-foot syndrome” on the internet, and had also gone to the trouble to discuss it with her husband, an M.D. with whom she shares office space.

She was able to tell me more about the condition than my oncologist had! It turns out the reason the problem arises has to do with excreting the toxins of chemo. I already knew that the chemo was passing out of me through my saliva, urine, and bowel movements, but I was unaware that it also leaches out of the pores of my skin, primarily through my palms and soles. In effect, it’s poisoning the skin – hence the discoloration and pain. Leah also told me that the two things I should avoid are heat and pressure on my hands and feet. Well, um, how exactly do you avoid pressure on your feet – unless you give up walking? And, avoiding pressure on my hands means: no gardening, no cleaning, no typing, no handicrafts! What am I supposed to do? Sit around and watch TV all day? (That would actually be another problem as I don’t have a TV connection…). And no hot showers? Are you kidding me?

So, I’m in a quandary. I told myself I would try to make it the full six months on chemo. Then I told myself I would try to make it at least four months. But, here I am at the halfway point and I really, really, really want to quit.

Leah’s husband, Don Fineberg, also took the time to talk with me. He could hear my desperation to quit, and he gave me some innovative ways to think about the decision. I am very grateful for his time and advice, and it definitely helped me focus more clearly on what my true goal is…but I’m still in a quandary. I sort of feel like the only reason I would choose to keep going with this treatment is to prove that I can. Somehow that just doesn’t seem like the right reason to continue. In my heart of hearts, I know I’m cancer-free and I strongly believe I am not destined to be one of the tiny percentage (less than 10% of cases like mine) that has a relapse. By taking the chemo for the past three months, surely I’ve reduced that percentage even more.

Anyway, that’s where I am these days. Not sure what I’m going to do. But I do know this: I’m going to garden, walk, type, make things in my studio, clean (occasionally) and go to yoga. Pressure or not! And enjoy my hot showers…

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Endurance

Posted in Journal Entries, tagged , , , , , on April 14, 2010| 5 Comments »

More and more, I’m finding that living with chemotherapy is really an elaborate form of endurance.

I’ve never been a runner, and I’ve never entered a race, but I’m going to use a running analogy here – so forgive me if you’re a runner and I get some of the details wrong…

Last fall, when I had six weeks of daily radiation, a weekly infusion of one type of chemo, and daily pills of another chemo, I eventually became extremely ill from the treatment load. But I managed to cope with it (mostly) by reminding myself from moment-to-moment that it was temporary. In a few short weeks I’d be through it. I now think of those days like running a fairly short race – maybe a 5K – when you haven’t prepared for it and you’re kind of out of shape, but you run it anyway. It probably won’t kill you, but if you’re not very fit, it will FEEL like it’s going to kill you! And, if you make it the distance, when it’s over you’ll collapse on the ground for a while before regaining enough energy to get up and have a beer to celebrate.

Since the beginning of this year, when I went back on Xeloda (an oral chemo I take daily for two weeks, then break for a week before going back on, with the goal of doing that for six months…), I’ve felt this round of treatment is more like running a full-scale 26.2 mile marathon after only half-heartedly preparing.  Again, it probably won’t kill you. And you can always slow down and walk the parts where you don’t have the energy to run. But – damn – it’s a long way. And some folks will have the experience of “hitting the wall” and not finish.

At the beginning of the race, there are tons of well-wishers around and lots of hugs and you-can-do-it’s. Even a few miles in, there will be people along the way to offer nourishment and encouragement. But inevitably there are those stretches where you’re alone – just you and your labored breathing and your wild mind trying to decide if you should continue on or stop…

Maybe that’s not how it is at all when you really do run a marathon. But that’s a pretty close description of what it’s starting to feel like as I approach mile 13 in this marathon of treatment.

That’s not to say I’ve been without support and encouragement and love and prayers. I surely have had all that and more. I think of the many “angels” who have been with me on this journey, who have whispered in my ear just when I was faltering, who’s wings beating around me have created enough wind to move me forward another few steps. The angels I know are often flesh and blood, occasionally made of wood and rusty bits, and sometimes merely ethereal.

I’ve tried to honor the angels in my life by creating my “artful” assemblage angels. Today, I’ve also created my own little Treasury gallery on Etsy called “Winging It” – to show off the work of other artists who appreciate angels and birds and other winged beings. (You can take a look until Friday at noon when the treasury expires: http://www.etsy.com/treasury_list.php?room_id=126124)

They are surrounding me now, moving the air around me, guiding me forward through the next few miles of this marathon called “cancer.”

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Tribute

Posted in Journal Entries, tagged , , on April 4, 2010| 4 Comments »

Today would have been the 79th wedding anniversary of my maternal grandparents, Ruth Cole and Vernon Wertz. They were married on April 4, 1931 in Washington, D.C. with only one other couple present (“to stand up for them” as Grammy would say) in a church filled with Easter lilies in preparation for the next day’s Easter service.

Ruth and Vernon Wertz

Grammy told me this story on a few occasions: She and my granddad were both from Nebraska. He actually courted her sister for a brief time before moving to Washington, D.C. to take a position with the government (it was the Depression and jobs were scarce, so he went where there were some). He and Grammy began corresponding by mail. I suppose it was a form of “dating” as she eventually agreed to marry him. She took the train from Nebraska to D.C., traveling for several days before arriving at what would become her home for the rest of her life.

Granddad had found a church for them to be married in and talked a couple he hardly knew into being their witnesses. Grammy would always tell the next part of the story with tears of delight: she was thrilled to find the church beautifully decorated with lilies and other flowers for the coming Easter service, but she secretly felt as if it was decorated just for her wedding.

After the ceremony, they celebrated by going to see a movie with the couple who had just “stood up for them.”

They celebrated 51 years of marriage together before my grandfather died. Grammy lived another nine years, passing away in her sleep on the eve of what would have been their 60th anniversary. (I believe she had a date with Granddad to spend their 60th together.)

So, today, on their 79th anniversary, I celebrate them for all the ways they contributed to who I am: jewelry-maker, gardener, girl scout, bird-watcher, artist, poor cook, traveler, flea market scavenger, collector of far too much stuff, and lover of life.

Thank you, Ruth and Vernon, for being my grandparents. Happy Anniversary.

My grandparents and the clock that lived on their fireplace mantel (still ticking all these years later...)

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