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Prolapsed Stoma

Posted in Journal Entries, Misc, tagged , , , on June 3, 2010| 24 Comments »

Just when I thought I’d experienced pretty much everything I was going to with this cancer stuff.  Then, without warning, my guts are hanging out. Literally. (Yuck.  Even the name – “prolapsed stoma” – sounds disgusting!)

I’ve been doing really well lately, feeling better, gaining weight, keeping busy. Then, last Thursday I noticed my stoma seemed to be “sticking out” a bit more than usual. It was about time to change the ostomy bag anyway, so I went into the bathroom, removed the bag and – gasp! – there was about an inch of, well, intestine protruding out of my stoma. Let me just say this is not something you want to see (don’t worry, there are no photos for this post!).

It wasn’t painful, other than emotionally. I will admit I pretty much freaked out. I did have the presence of mind, though, to immediately phone my surgeon’s office. I got Dr. Brown’s nurse, Blanca. Usually she’s very helpful and sweet. Perhaps I caught her on a bad day. Between sobs, I described what was happening, and her rather un-sympathetic response was, “Well, that happens sometimes. If it gets worse, you should go to the hospital.”

I was choking back tears of panic. She asked me to hold a moment. When she returned, she said she’d been able to speak to Dr. Brown between patients and he suggested I lie on my back to see if the intestine would go back in on its own. She said he wasn’t too concerned if it was only protruding about an inch. If it got to be four or five inches, then I’d need to have it looked at.

I hung up in disbelief. My guts were literally hanging out and my surgeon wasn’t too concerned? However, I did as he suggested and laid flat on my back in bed for a while. It wasn’t long before the intestine began to sink back in (where it belongs, thank you!). While I laid there watching and waiting, I couldn’t help but think there has to be something symbolic about having one’s guts hanging out. But, for the life of me, I couldn’t come up with what it was.

When I finally felt like it was safe for me to get up, I went right to the computer and Googled “stoma prolapse.”

Not a good idea! I saw all sorts of gross photos of intestines popping out of stomas several inches and more. I tried to just read the text and not look at the pics, but it was impossible not to notice them. Besides, there wasn’t much explanation in the text that seemed helpful either.

Fortunately, my three-month check-up with Dr. Brown happened to be scheduled for today. I went to his office hoping to get some answers to my burning questions:

• What causes this to happen?

• What can I do to prevent it?

• Will I need surgery?

His answers were (in this order):

• Don’t know.

• Nothing.

• Hope not.

Okay, I may have paraphrased a little. Basically he said they don’t know why stoma’s prolapse, although he believes it’s often related to a stomal hernia. He felt around my stoma as I was reclining and then lifting up as in a crunch, and said he thought I might have a small stomal hernia forming. (Oh, joy…)

He said there was really nothing I could do to prevent another incidence of prolapse. And there wasn’t much I could do to prevent the hernia from increasing. He said, “You could lie on you back all the time and never use your stomach muscles, but I don’t think you want to do that…” And, as for surgery, he said he did not like to operate on stomal hernias unless it was absolutely necessary. Ditto for prolapsed stomas. If I had a persistent prolapse of many inches, he said we would consider surgery then.

Well, thank God for small favors! I am so disinclined to have more surgery (unless it concerns life or death), I was at least comforted by this last bit of info.

So, for now, I guess I’ll just keep doing what I’m doing. And keep trusting that it was a one-time incident…or at least that if it should happen again it won’t be any worse.

I left Dr. Brown’s office and had a chocolate milk shake – to reward my inner cry-baby for not making more of this than need be.

~ ~ ~ ~ ~

Okay, I can’t stand not including a photo. So here’s one I took tonight of my new neighbor. His name is Billy.

My new neighbor, Billy. Isn't he adorable?

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Acupuncture Treatment

Posted in Journal Entries, tagged , , , , on May 26, 2010| 2 Comments »

About a month ago, I had my very first acupuncture treatment (ever!). For years now I’ve heard and read about how helpful acupuncture can be, especially for symptoms that don’t always respond well to traditional Western medicine. But I was so put off by the whole idea of getting stuck with a bunch of needles, I never tried it. Besides, before this dance with cancer I was really darned healthy and never felt a real need for acupuncture.

When my discomfort from the “hand and foot syndrome” (a nasty side effect of Xeloda) was enough to keep me from doing things I enjoyed, a fellow yoga student, who also happens to be a well respected acupuncturist, offered to treat me in hopes of relieving some of the chemo side effects. I was reluctant, but my pain was great enough to get me to go. Now, five treatments later, I’m so glad I kept that first appointment!

So, I’ve found myself in the unlikely role of telling everyone I meet how great acupuncture is. Seems like time to post a blog entry about this whole acupuncture thing.

Look closely - there are needles in my back!

First: It makes a difference who you go to.  I really like Leah Fineberg. She’s compassionate and nurturing at the same time as being funny and direct. We talk and laugh throughout the appointment, sometimes comparing notes about our families (who’s driving us crazy and why), sometimes dissecting the last yoga class (“were there an awful lot of deep twists, or what?”), and sometimes she just listens while I complain about the lingering side effects of chemo. But the thing that really matters to me is that I like how I feel after my interactions with Leah. That hasn’t always been my experience with “healers.”

Second:  It’s not about the needles.  At my very first appointment Leah told me, “I don’t have to use needles on you.” She took my pulse at several points on my wrists and throat. She applied pressure with her hands to my shoulders, back and hips. And then, when I was comfortable and she decided she’d like to try the needles, it was really no big deal at all. I was nervous enough before she inserted the first one to jump a little when her hand touched my back (before the needle even came close…). But then I didn’t even notice when the needle itself went in. Since that first time, if I feel anything at all, it’s as if a finger thumps me lightly. Usually it’s not even that much. Once in while (infrequently) I’ll feel a tiny poke or pinch that happens briefly and then it’s over. It’s not nearly as bad as having blood drawn – not even close.

Third:  It’s so soothing you won’t believe it.  I tend to feel cold more often than not (except when I’m having a hot flash – which is a new phenomenon for me – but afterward I go right back to feeling cold). So when she heated up needles on either side of my spine I was in heaven. For the first time in ages my spine felt warm and supple, not stiff and achy like is has while I’ve been in treatment for cancer. She uses something called “moxa” (an herb that’s applied externally and burned like incense). Apparently, using the moxa together with the needles allows you to relax even more. Now, I look forward to this part of the session more than any other single thing she does. The overall experience of acupuncture has turned out to be very comforting, but the heated needles are the bomb!

Heated needles ... mmmmmm!

Fourth:  The healing effects are almost immediate.  I usually leave Leah’s office feeling light and peaceful – even if we’ve talked during the entire session. Something about the treatment calms me immediately. And Leah has said my “pulses” have gotten better with each visit (I’ll just have to trust her on that one). I feel certain I’m getting benefit from having these acupuncture treatments, but – in answer to those who ask if it’s “effective” or not? – it’s something I experience as being very healing, and that counts as “effective” in my book!

Acupuncture is also a very individual experience. It may not be for everyone. I’m normally kind of reluctant about things I don’t understand. But, in this case, I can say without any hesitation that acupuncture has helped me better deal with the side effects and stresses of cancer treatment. And for that I can only be grateful!

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Wellness Workshop

Posted in Journal Entries, tagged , , , , on May 19, 2010| 3 Comments »

Time to tie it all together! (I stamped words on the ribbons to remind me how far I've come)

Over the weekend, I attended a wellness workshop for cancer survivors hosted by the St. Vincent Cancer Center. Marla, the center’s social worker, had invited me ages ago, even before I thought to call myself  “a survivor.” But as the workshop date approached, I found I was a little reluctant to go. I couldn’t really explain why. But I had told Marla I would be there, so I went. Then, sitting in a circle with twenty-five or so others, I heard another participant articulate beautifully her own reluctance to attend. She said she’d already put “having cancer” behind her and she really wasn’t interested in dredging up all those difficult emotions again. I immediately understood exactly what she meant. And yet, by the end of the day, we both agreed the workshop was a truly valuable experience and had helped us renew our commitment to making the most of this gift of life we’d been given!

The front cover of my little "collage" book made during the Wellness Workshop

(This will seem a bit odd, but way back when I was diagnosed I remember telling my therapist that I didn’t look forward to having the label “cancer survivor” attached to me. Of course I wanted to survive – I just didn’t want to live with such a narrow label of who I was…But here I am today talking enthusiastically about attending a “cancer survivor’s” workshop!)

The program was held at the Hotel Santa Fe and funded entirely by the Heidi Paoli Fund of the New York Community Trust. Of all the women in the room, only two had not had cancer: Cynthia (my nurse practitioner, who I was delighted to see there), and a woman named Joyce, who was introduced to us as the person behind the Heidi Paoli Fund that made the workshop possible (both her husband and his daughter, Heidi, had died from cancer). Nearly all of the others there had lived through breast cancer, but there were a few of us with other types: Nanci had lung cancer, Sarah had throat cancer, and me with colorectal cancer.

Inside, with pieces that can be removed and replaced as I wish!

Each of the two facilitators had survived breast cancer – both more than once! Marla, who compiled a huge notebook for each of us with tons of resources and information, had been through it twice. The other presenter, Pasha Hogan, a wonderful inspirational speaker as well as yoga instructor, was a three-time breast cancer survivor! She impressed me even more with her passionate way of leading us through some stress reduction techniques, including guided meditation and yoga.

And, we had a nice lunch under a portal in the Hotel’s courtyard. (I could overhear the other tables exchanging cancer war stories with each other, but thankfully our table talked mostly about gardening!)

The outside of my collage book...

By far my favorite part of the day was the “creative arts” project we worked on in the afternoon. We created these sweet little collaged accordion books. Of course I launched into mine with gusto! We were asked to set aside our “inner critic” and just cut and paste without questioning what or why we chose the images we did. Afterward, we were asked to share a little bit about our collage. I couldn’t help but notice that my perfectionist self hadn’t fully stepped aside while we were creating. So, I decided to honor that bit of me by including an image of a book with the title “Perfection.”

I know that I’ve been dramatically changed by my experience with cancer, but I discovered during this workshop that I like the fact that there are still some aspects of me I haven’t lost. I admit that I’m actually glad to find my “perfectionist” has survived along with the rest of me!

So, here are some photos of the artsy little “cut and paste” project I came away with. I can also say that I am very grateful now to be called a cancer survivor. Let’s hope the label sticks with me for a long, long time!

The back cover...

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Mother’s Day

Posted in Journal Entries, tagged , , , , on May 9, 2010| 6 Comments »

Spent the early part of the day with my mom to celebrate Mother’s Day together – something we’ve only been able to do since she moved to Santa Fe a few years ago. Before that, we mostly had to settle for a card and a phone call (okay, sometimes I’d send a small gift). I recall writing on so many of those cards “Wish we could spend the day together.” And, now we can!

This morning we went to Mom’s church, the Christ Church Santa Fe, which is in a beautiful contemporary building, has two great pastors (both very different!), and a congregation that has been especially warm and supportive to Mom (and who’ve said many, many prayers for me). She’s really found a wonderful community to be a part of, and for that I’m truly grateful.

Dadou - the French accordion player at Café Paris

After the service, we went down to the Plaza area for a late breakfast/lunch at Café Paris. It’s located on a little pedestrian street called Burro Alley (where, in the old days, locals sold their firewood off the backs of burros). It has the most charming French country atmosphere. Sitting outside under the market umbrellas, looking at the old windows with their Provence curtains blowing in the breeze, listening to the distinctly French music of the accordion player – you really feel you could be in some little out-of-the-way village in France.

I was delighted to find that their menu had several items on it that Mom would be willing to try. That’s usually not the case when we go out for a meal. She’s possibly the most picky eater I’ve ever known (which does make one wonder how I became so willing to eat just about anything!).  So, I’ve made a mental note to take her back there again when I run out of other ideas for restaurants she’ll eat at! (In this town known for its phenomenal southwestern style food, Mom absolutely won’t eat what she calls “Mexican”).

So, she had her Strawberry Pancakes and fresh squeezed orange juice, and I had my Eggs Benedict with homemade Hollandaise sauce and a Café Latte served the proper French way – in a big wide cup! We so enjoyed the warm day, the colorful and diverse crowd, and the music provided by the accordion player, Dadou. The owner of Café Paris, a full-figured dark-haired beauty with a thick French accent and a frangipani blossom tucked behind one ear, occasionally stopped to sing with Dadou, adding a tambourine to the mix when she wasn’t scurrying around delivering dishes to customers. It was just wonderful!

Mom at Café Paris on Mother's Day

Afterward, we walked in the direction of the Plaza but got sidetracked by a dress shop called Maya. I tried on every hat they had that didn’t have an enormous brim (and I mean enormous!), but none were quite right for me. I’ve been losing big clumps of hair as a side effect of the chemo and my hair’s so thin now my scalp is mostly visible, so I wear hats as often as I can – but, of course, once must have the right hat for each outfit!! None of this just-shove-any-old-hat-on sort of thing for me!

So, as you can see, we had a nice outing for Mother’s Day. I’m very thankful to be alive and well enough to spend it with Mom.

And a very Happy Mother’s Day to all the women who’ve been there to nurture me over the years! Merci beaucoup!

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Chemo Completed!

Posted in Appointments, Journal Entries, tagged , , , , , , on May 5, 2010| 4 Comments »

I got the nod from Dr. Fekrazad yesterday – it’s OK to call it quits with chemo!!

AND - the first iris opened today!

I’ve been leaning in the direction of stopping for several weeks now.  I finished my 5th round last week – and I decided “enough is enough” when my hands were so bad that I couldn’t open the yogurt container, my feet kept me from being able to go to yoga, and my eyesight so blurry I couldn’t work at the computer.

I called the Cancer Center to make an appointment to discuss the decision with my oncologist. When I explained the reason, the front desk folks wanted me to speak to Dr. Fekrazad’s nurse practitioner, Cynthia, before scheduling anything. She picked up the phone, and before I could utter a word I heard, “I just want to applaud you for making it this far! You’ve done a great job!” She went on to affirm my choice to stop the Xeloda and said she’d be there for me when I told Dr. Fekrazad. Hearing her kind words brought me to tears! What a relief to know I wasn’t going to have to fight them over this.

So, I was grateful yesterday when Dr. Fekrazad was accepting and even supportive of my choice. One of the most encouraging things he said was that my attitude about the experience of cancer played a significant part in my return to health. He gave an interesting analogy: You’re walking along and all is well. Then, suddenly, you fall into a deep hole. Some folks will simply muck about in the hole and not really attempt to climb out; some will climb out, only to sit on the edge and stare back into it; some will climb out and limp away, occasionally glancing back and shaking their head; and some will climb out and walk away, putting the entire experience behind them. He said he felt my attitude put me in that last category – which is a good indicator of continued health in his opinion.

The newest addition to the garden - a lovely crabapple tree!

A few facts I learned yesterday: it should be about six weeks before my hands and feet begin to really clear up, but it will be about six months before the Xeloda is completely out of my system and I’m feeling 100% like myself again. The skin discoloration and all the new moles that have cropped up will probably fade over time (yay! perhaps one of these days I won’t have that shadowy mustache!). My eyesight should begin to correct in a few weeks, but I’ll need to get checked for cataracts (Dr. Fekrazad’s mother, who was on Xeloda much longer than I was eventually needed cataract surgery as a result).

Even though I’m done with the chemo, there are still a bunch of medical appointments to come:

➢  Tuesday, May 11 – Dr. Damara Kaplan, Urologist (for the bladder condition that’s arisen as a result of my surgery; with any luck, she’ll recommend physical therapy to try to correct the condition and NOT more surgery!)

➢  Wednesday, June 2 – Dr. Brown, the colorectal surgeon (for another follow-up visit)

➢  Wednesday, June 9 – Bloodwork, and office visit with Dr. Fekrazad to review labs

➢  June (to be scheduled) – Mammogram

➢  July (to be scheduled) – Colonoscopy

➢  August (to be scheduled) – CT Scan

A small aspen joins our little "grove" of aspen trees

The colonoscopy will be done through my stoma, which will be WEIRD, but if the results are good I may not need to have another for five years!  I’ll probably be scheduled for CT Scans annually for at least two or three years. And there will be regular bloodwork and office visits with Dr. Fekrazad (forever, he tells me!).

Last fall, my Dad gave me a very generous gift certificate to a local nursery. Back then, I was reluctant to get anything and plant it, as I knew I couldn’t care for it while I was ill. But, in honor of being done with my treatment, Tim & I went over to “Plants of the Southwest” and picked out two small trees: a beautiful crabapple and a tiny aspen. They were planted on May Day. I plan to see them grow tall and become strong over the coming years. I plan to grow and become strong along with them!

small today, tall tomorrow

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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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Chemo Reality

Posted in Journal Entries, tagged , , , , , on March 24, 2010| 4 Comments »

Recently, as I was going through my stash of old sheet music looking for inspiration and something interesting to use in the creation of one of my assemblage angels, I came across a piece with the words “con fermezza” – an instruction to the musician to “play with firmness.”

For some reason this idea appealed to me. Lately I’ve been trying to see this leg of my journey with cancer as an opportunity to recreate my life more artistically than ever. An artist I admire named Keri Smith says in her book Living Out Loud: Activities to Fuel a Creative Life that “play is the most important element in discovering who you are.” So I’ve started working on playing more…and in my case, since play hasn’t ever been my strong suit, I think I need to practice with firmness!

Con Fermezza Angel

In continuing my regimen of taking chemo these past few months, I realize I haven’t particularly wanted to accept the myriad side effects as they are building. I seem to have created this idea in my mind that I’d be able to “breeze through” this round of Xeloda. But odd things keep developing that I can no longer ignore. So I took this list of things with me to talk about with my oncologist at our last appointment:

  • The “hand and foot syndrome” is getting worse. The skin on my palms and soles is much redder, the tissue has very little elasticity now, and my fingers ache all the time.
  • Moles, freckles and age spots – call them what you like – are cropping up on my hands, feet, and face at an alarming rate now. I’m especially aware of new ones on my nose and above my lip (creating a nice shadow effect that makes it look like I have a faint mustache!)
  • My vision is changing. It’s become uncomfortable to wear my contact lenses. My eyes simply burn sometimes, and I occasionally see “floaters” and spots.
  • About a half hour after I take the pills, I have a lot of abdominal discomfort. I generally have to lie down for a while until the pain passes (which it usually does within a short time).
  • I’m rarely able to sleep through the night. I fall asleep just fine, but awaken in the middle of the night and have trouble getting back to sleep.
  • I get tired a lot. The fatigue comes on quickly, like hitting a wall. I’m seemingly fine one moment and the next I’m not.
  • I only want to eat sweets – nothing else tastes very good or holds much interest for me. I have little enthusiasm for food (except for cakes and breads and pies and chocolate).

To each of my complaints, Dr. Fekrazad gave nearly the same answer: “Yes, that’s from the Xeloda. And it’s probably going to get a bit worse.”  Oh, joy.

But here’s what he said that I could appreciate: He described his role as similar to that of a parent who takes their child in for a nasty shot. The child is crying and screaming from both fear and pain.  The parent knows it’s awful for the child, but also knows it’s for their benefit. They don’t like inflicting pain on their baby, but under the circumstances it’s what they feel they have to do.  Con fermezza.

Then Dr. Fekrazad actually said these words: “I know I’m poisoning you. I know it’s difficult.” He also said that while he strongly recommended I stay on the chemo until July, if the time came when I knew in my heart I couldn’t tolerate it any longer, he would agree to stopping the treatment early. He said he trusted my intuition about when “enough was enough” and that he would support me if I made the call to quit before the six months was up.

So, I’ve done a little more self examination (does it ever end?) and decided that maybe I can approach this part of the journey in the same fashion as my creativity. Play with firmness! Think of this whole chemo treatment reality as just a game – laugh at my freckle mustache, get a pair of quirky horn-rimmed glasses, wear gloves all the time (like it’s Hollywood or something), live in pajamas and sleep during the day when I have to, enjoy being up at night when the world is all quiet and there’s nothing to distract me from playing. And eat cake.

Con fermezza.

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Colostomy Blow-Out!

Posted in Journal Entries, tagged , , on March 10, 2010| 7 Comments »

I suppose it was bound to happen eventually. But I somehow had the illusion that it wouldn’t happen to me!

I had a HUGE blow-out with my colostomy bag. Thankfully, I was at home when it happened. It was bad. REALLY BAD. I was sitting at the computer when I realized something had happened, so I lifted up my shirt and camisole to take a peek, and there was SHIT everywhere! It was all over my waist and side, all over my camisole, all over my shirt…oh, man, it was everywhere!

So, I’m really glad it didn’t happen while I was out somewhere.

I think the seal on the bag failed because I’d been using baby oil to lubricate the inside of the pouch (so it would be easier to empty). The ostomy nurse and some literature I’ve read said baby oil or cooking spray was okay to use. I opted for baby oil because I just couldn’t wrap my head around keeping a can of Pam in the bathroom. But I think the baby oil must have gotten under the wafer seal somehow and the whole bag just came loose from my skin.

Trust me…this is not something you ever want to have happen. To add insult to injury, both shirts were white! I’ve washed them in hot water numerous times already and you can still see some of the stain. Made me wonder: how did mom’s ever get cloth diapers clean…?

So, I may just have to get used to keeping cooking spray next to the toilet. In comparison to the legions of other things I’ve had to adjust to in this dance with cancer, I suppose Pam in the bathroom is fairly minor.

Thought y’all might get a little chuckle out of this post. (No photo though!)

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