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Posts Tagged ‘Xeloda’

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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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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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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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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Sorry for the delay in getting a “health update” out there. I’ve been so darned busy with all the normal daily activities of life (and so very grateful to be able to say that!) that the blog took a backseat for a bit!

I saw my surgeon, Dr. Brown, for a follow-up visit (can you believe it’s been 3 months since my colon surgery?) and he said I was doing great. There’s still a little “tightness” where the incisions are, but that’s normal and will soften over time. I also still have a tiny bit of “seepage” but it’s fairly minor and should also go away with time.

The only disappointing bit of news is that he wants me to see a urologist now. It seems when they remove the rectum, it leaves the pelvic floor unsupported for a while, until the organs and tissue shift around and fill in the space. So, he now thinks it’s possible that my bladder has “tipped” slightly (as things are rearranging themselves and vying for space in my abdomen), and this could be what is creating some newer symptoms I’m having. (I swear, I absolutely DID NOT go through the challenge of colon surgery and having to adjust to life with a colostomy only to end up with urinary incontinence! Not at 48!) So, we’ll just see what this next specialist has to say about things. Dr. Brown is referring me to a woman urologist, someone he felt I would “really like.” Uh-huh.

Meanwhile, I’m on my third round of Xeloda since starting back on chemo in January. I’m sorry to note the side effects are building with each round. The main thing is I get suddenly fatigued without warning. Sometimes I’m able to push through it and other times I just have to lie down and nap for a while. Often though, by the time I should be thinking about going to bed for the night, I’m finally wide awake and not so tired anymore. So, it makes for an odd rhythm to my days.

another chemo side effect

Another side effect – one my oncologist checked for at each office visit during last fall’s treatment, but which never happened then – is a skin problem with the palms of my hands and soles of my feet. The skin is slowly getting redder and redder, and it feels very “papery” – as if it will crack easily, which it does. It’s not terribly painful, but I can tell it’s getting a bit worse with each dose of Xeloda. So, I’m constantly slathering on various moisturizers, including a nightly coat of Bag Balm and wearing little white cotton gloves to bed. Very charming.

Got Moisturizer?

I’m due to see Dr. Fekrazad on Wednesday. I’m sure we’ll discuss all of this and more. I believe he’s going to order another ultrasound on my arm that had the blood clots. If they’re still gone (fingers crossed!) I’ll be able to stop giving myself the nightly shot of Lovenox. My belly will be very happy about that as the bruises from being poked so regularly are starting to seem permanent!

In the way of happy news: I’ve been back to yoga class a few times. I’ve felt well enough to take an hour-and-a-half long class for level 1 and 2 students. My sweet teacher, Linda, has been very encouraging, telling me I’m doing great. She said I still have good balance and even some of my former flexibility, but I really need to build my strength up again (she gently mentioned my skinny arms are like “little bird legs…”). However, I did manage a nice head stand – my first time doing any kind of inversion in about eight months. It was a little disorienting and I was nervous about my colostomy “voicing its opinion” about being upside-down, but thankfully it stayed quite for the minute or so that I was balancing on my head.

I’ll report in again after Wednesday’s appointment at the Cancer Center.  For now, I’m off to try to get some rest…

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Yesterday I finished the first two-weeks of my Xeloda “adjuvant therapy” (a fancy medical term for additional chemotherapy after the primary treatment is over, to lower the risk of recurrence). I also had an appointment with my oncologist Dr. Fekrazad so he could monitor how things are going. The bottom line: “so far, so good!”

I haven’t really noticed any significant side effects from this round of Xeloda. I had some brief stomach cramps the first couple of days I took it, but discovered if I take all my various supplements about a half-hour before the Xeloda pills, I don’t seem to have the cramps. I started to suspect that putting about 15 pills in my belly at one time was maybe a bit too much! I’ve also felt just a little fatigued in the afternoons – so some days I just succumb to it and lie down for a nap, and on other days I seem to manage to push through it. In general, I haven’t experienced anything really debilitating, at least not yet.

Some of my daily regimen...

Yesterday’s visit to the Cancer Center was my first in six weeks. Everybody who saw me commented on how good I looked! I know I was pretty pathetic looking during my daily visits last fall, so it probably didn’t take much improvement for them to think I looked better! Nonetheless, it felt great to have a bunch of people seem so happy to see me doing well. I think one of the things that makes the job of working in a Cancer Center fulfilling is watching patients get well.

I had to have blood drawn while I was there.  Since I don’t have the port any longer, I’m back to getting blood taken from a vein in my arm. Fortunately, they had no trouble this time. Since I’m still on Lovenox (a blood thinner), that may have helped make the whole process a tad easier.

As of today, I’m on a one-week break from the Xeloda. After that, I go back on for another two weeks, following the pattern of two-weeks on, one-week off for the next six months. Here’s the rest of the plan Dr. Fekrazad laid out for the coming months:

  • I’ll see him every six weeks, unless I have a problem and need to see him sooner
  • They’ll draw blood at those appointments to look for specific cancer markers
  • At the end of March, I’ll have another ultrasound on my right arm to make sure the blood clots haven’t returned
  • If there are no clots, I can then stop taking the Lovenox (yay! no more nightly shots in the belly!)
  • In June they’ll schedule another CT scan to look for signs of cancer anywhere in the body
  • In July I’ll need to have another colonoscopy (that should be weird – they’ll have to go in through the stoma since there’s no “other entrance” any longer)
  • And, finally, if all goes well, I’ll stop taking the Xeloda in July (right around my birthday!)

So, that’s what there is to report health-wise. Happily, it looks like I may need to start blogging about more exciting things than my good health very soon! On that note: I went to a yoga workshop over the weekend (yes! a yoga workshop!), so perhaps I’ll give you a post about that next time…

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I awoke to a blanket of snow this morning. Not too much – an inch or so – enough to give the world a fresh, clean look (for a little while at least!). Tim had sweetly left the fireplace laid with wood, so all I needed to do was open the damper and light a match. Soon I had a roaring fire before me and the Christmas tree twinkling nearby. I sipped my first cup of tea while reading today’s meditation in The Book of Awakening. One of the Curve-billed Thrashers who’s made his home in our cholla perched all fluffed-up on an Aspen branch just outside the window. I swear he was enjoying watching the fire, too.

Curved Bill Thrasher in Snow

As you can imagine, I’ve been giving a lot of thought to the various options laid out by Dr. Fekrazad concerning follow-up chemotherapy. I’ve also had some heart-to-heart talks with my closest “peeps” about the decision to be made. And I’ve gotten loads of encouraging comments, emails, calls and other support from people near and far (as always, thank you for the continued outpouring of love! You all astound me!).

I knew I didn’t want to remain up-in-the-air about this over the holidays, and with Monday being the Solstice, it seemed appropriate to make my decision on a day that marks the beginning of the return of the light. So, on the longest night of the year, I made the choice to take the “middle path” – meaning I will take the oral chemotherapy (Xeloda) but not the chemo infusions. It feels like the right decision for me: if I chose to do nothing and the cancer returned, I’d be saddled with regret on top of having to take up the fight for my life again. My intuitive belief is that I am going to remain cancer-free, so agreeing to further chemo is really just a form of emotional insurance (which is why I feel it will be sufficient to do only the oral chemo and not the infusions too).

I’m not quite sure when I’ll begin the chemo treatment. Dr. Fekrazad indicated we would start as early as January 3rd, but I’m going to ask to wait just a little longer in order to be more fully recovered from my surgery. Dr. Brown and the ostomy nurses have each said it’ll take at least 6 to 8 weeks after surgery before I start to feel like myself again. And I’m reluctant to start chemotherapy while I’m still feeling depleted from surgery!

I keep reminding myself that on Christmas Eve it will be only three weeks! Although I continue to do a bit better each day, I still easily experience fatigue and pain (generally when I do too much – imagine that!). Of course, I’m very grateful to be able to do as much as I am, but I also find myself getting impatient and wanting to be “all better” already! While Shawn was visiting a few days ago, I told her I was getting really antsy to get back to yoga practice (my last class was in July!). As I told her this, I was shifting uneasily in my chair to accommodate the pain in my bottom from sitting. She looked on with her usual yoga instructor compassion and gently suggested I might want to wait a little while longer…remember that thing about 6 to 8 weeks for recovery?

So it seems my work these days is to accept where I am in this process of healing. Often I can approach things with humor (I’ve discovered that my colostomy behaves a lot like Pavlov’s Dog – no sooner do I go through the messy process of emptying the bag, cleaning myself and the toilet up, and getting redressed, before I find the thing immediately pooping out more! So I’ve changed my stoma’s name from “Vesuvius” to “Pavlov’s Dog”). But, on occasion, I have to let myself indulge in a full blown Hollywood cry*, especially when I find myself struggling with the permanency of all this. I know some day it will all be part of my ordinary routine, but right now learning to accept my life as it is feels something akin to grief – it has it’s own rules and time table. I’ll feel better when I feel better, and not before!

*  Credit goes to my friend Michelle for coining this phrase as we compared notes on our post-surgery progress. An accomplished ski instructor, she had an accident during a routine instructor training clinic, and found herself with a badly broken tibia. Her surgery (plate and pins under the knee to put it all back together) was just a couple of days after mine. She’s already crutching around and doing physical therapy, but won’t be skiing again this season – that’s for sure! If you’re anywhere near Ouray, CO, be sure to check out her whimsical little shop The Blue Pear. (Tons of love to you, Michelle!)

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