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Archive for October, 2009

Warning:  This post written under the influence of strong pain killers. May contain unintelligible gibberish, unfinished and/or run-on sentences, or just plain drivel.

 

I never imagined I would say this, but it seems I now have something in common with Rush Limbaugh:  Oxycodone.  Since I’d like to limit the things he and I have in common, I’m planning to be careful not to let my use of pain killers turn into an addiction like his.

As of today, I’ve seen three different doctors at the Cancer Center concerning my continuing throat problem. Pretty much all of them agree it’s related to the Xeloda I was taking. What they don’t quite agree on is whether it’s actually thrush, mucositis, or a combination of both. I’ve been taking the meds to treat thrush for five days now with no real improvement. Unfortunately, there’s no particular “treatment” for mucositis – you just have to wait for it to heal, much like a virus.

I took my last Xeloda pill over two weeks ago. Today’s doctor thinks that in about a week the Xeloda will have cleared from my system enough for my throat issues to heal on their own. Meanwhile, I have been unable to eat anything because of the excruciating pain of swallowing, and have continued to lose weight at an alarming rate (105 today). So, the newest approach is to have me take pain killers in order to “minimize the discomfort” of swallowing.

I was instructed to take “1 or 2” of the Oxycodone pills every four hours. At 1:00 this afternoon, I took my first pill. By 1:30, I still couldn’t swallow, so I took the second pill.  By 2:00 I was surprised that I could actually swallow with much less difficulty, and I managed to eat more food during the next half-hour than I’ve eaten over the past four days combined! Wahoo! Then, at 2:30 I passed out in a drug-induced delirium. Four hours later, when I might have taken another dose, I was still completely out-of-it and pretty much unaware of anything but the drool on my pillow.

It’s been about six hours now since I took the Oxycodone and, although I’m certainly more alert, my eyes and limbs are still very heavy.  I’ll have to take another dose here shortly in order to eat again, but I’m thinking this time I will just take one pill and wait a little longer to see if it can do the job on it’s own. Otherwise, I’ll be back in Wonderland for the next several hours. If I’m not completely spaced-out over the next few days, I’ll try to give an update on the eating situation. Meanwhile, I’m going to see if I can avoid that rabbit-hole I fell into earlier.

Alice - Rabbit Hole

Alice about to take a tumble down the rabbit hole

P.S. – Some of you have already been asking about my office visit with the surgeon, Dr. Rajput.  Unfortunately, it didn’t take place (chalk it up to poor communication at UNM). Now I’m scheduled to see him on Wednesday, November 4.

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Here’s a portion of a recent entry from The Book of Awakening (my daily meditation book of choice) that spoke directly to me.  Although I’m not sure I can fully embrace the author’s message today, I have hopes that I can find my way there eventually:

Be content with what you have, / rejoice in the way things are / When you realize there is nothing lacking, / the whole world belongs to you.      – Lao-Tzu

Beyond what we need to survive, to better ourselves has come to mean having as much as one can store…Such a want to have things comes from a sense of scarcity, an anxiety that something is missing, which owning will somehow soothe.

But to better ourselves inwardly is another matter. The closer to heart we take this, the more we find ourselves trying to inhabit what we have carried since the beginning…a yearning to unlock the mystery of what is already there.

This difference became stark for me while struggling with cancer. For while I prayed for things to be better, my prayers were answered when I awoke one morning content to be who I am, no matter what was happening. Though things were not as I wanted, there was truly nothing lacking, and I vowed, as the nurses started their morning rounds, that I would trade places with no one, spirits with all.      – Mark Nepo

At the moment, I can only aspire to this, as I must admit I pray fervently for things to be better and find it hard to really, truly accept that nothing is lacking (nourishment, strength, and health all come to mind). I believe I am content to be exactly who I am – I’d just like to be vibrantly healthy, too. But I also trust that as I work toward not wanting to “trade places” with anyone, I will find that I am “bettering” myself, both outwardly and inwardly.

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I know some of you start to worry when I haven’t posted something for a while. I’m reluctant to say that, this past week, you would be right to be concerned. It hardly seems possible, but in some ways things have gone from bad to worse. (I’m wondering if the Captain of that QE2 I wrote about earlier was maybe a little impaired and turned the ship the wrong direction?)

The short version is: the very instant my abdominal pain began to ease, so that I could actually begin to think about eating “normally” again, I developed a severe sore throat (probably a virus related to the afternoon fevers I’ve been having) and it has made swallowing absolute torture. The worst of it has been going on for about four days, and – believe me – I have tried EVERYTHING:  salt water gargle, baking soda gargle, hot water with honey and lemon, various hot teas, cold water (with and without lemon), tepid water, slippery elm lozenges, zinc lozenges, scraping my tongue (!), popsicles, ice cream, broth, tylenol, illegal drugs, you name it…I can swallow nothing without it being traumatic.

Magic Mouthwash (a/k/a "novacaine")

Magic Mouthwash (a/k/a "novocaine")

They finally prescribed a special mouthwash for me (actually called “Magic Mouthwash”) that has an effect similar to novocaine. The idea is to numb the throat briefly so I can eat. However, when I use it, my lips, mouth, tongue and gums become completely numb, as if I’d just been to the dentist, but unfortunately I can’t get enough of the “magic stuff” to the far back of my throat where I swallow (I’ve tried and tried).  Not to mention, the rest of my mouth is then so numb that putting a spoon or fork in there becomes a bit like feeding a baby. Most of it ends up on my chin.

Soooo, since Thursday I’ve eaten next to nothing: I can get a spoonful or two or yogurt down with great difficulty. I’ve tried a few spoonfuls of oatmeal (very unpleasant). I managed about a 1/4 cup of chicken noodle soup (broth mostly). Even the Ensure I was living on previously won’t go down without a lot of discomfort. Needless to say, I’ve lost some more weight. The last time I checked it was about 107.

I’m very aware that the whole point of this window of time before surgery is to regain strength and weight, and to be as healthy going into the surgery as possible. Yet the clock is running down rapidly and I continue to waste away. I can’t help but wonder what the big overall plan might be here. I must admit, I feel a bit forsaken – or maybe that’s just starvation talking. Throughout this whole ordeal with cancer, I’ve understandably had a few low points and have let despair creep in from time to time. This past week or so, I think I’ve sunk to a new level of desperation. I’ve had many a tearful conversation with the powers out there that are far greater than me, trying in vain to comprehend how, after surviving the chemo and radiation treatment with great difficulty, I should now be visited with the inability to swallow food. Surely this is a bad joke that will end soon.

Meanwhile, Dr. Fekrazad has gently suggested I start taking an anti-depressant. He argues that I will be more likely to have my physical health improve if my mental health gets a boost. He also thinks it would help me deal with the emotional effects of the surgery a bit better. Although I’ve been opposed to this idea in the past (for myself – this is not my opinion for others), I went ahead and filled the prescription and now have a little bottle of Lexapro on hand. But I haven’t been able to take any yet because I can’t swallow them.

A better mood in a bottle?

A better mood in a bottle?

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My dear friend John, who is currently in Costa Rica at his home-away-from-home (Casa Limon Dulce), recently did a ceremony for me on the mountaintop property he and Richard and Philip own there.  I met John back when Kindred Spirit was first opened, and he became quite a wonderful “fixture” at our shop.  He was, among other things, a kind of unofficial, resident dream analyst, and we regularly reviewed our dreams in detail while sharing tea. I particularly loved that John always seemed to have a fresh perspective to offer when I got bogged down by something.

Several years ago, on our shared birthday, John whisked me off to Disney World for the day.  We hopped on a puddle-jumper in Key West, landed in Orlando, raced by taxi to the park, and proceeded to enjoy as many of the amusements and rides as we could squeeze into a few hours, then dashed back to the airport to fly home by nightfall.  It was a memorable birthday, to say the least.

Enjoying "Fantasia" in 3D at Disney World

Enjoying "Fantasia" in 3D at Disney World

Although we haven’t seen each other in a number of years, happily we still keep in touch by email & occasionally phone (John, I’m thinking of the time you dropped the phone in the pool while we were chatting about a year ago…).  And, sometimes, our connection is in dreams, as it was earlier this summer when John dreamed of my illness before I was even diagnosed. He sent me a tearful email describing the dream on the very day I happened to learn I had cancer.

So, today I opened his email about the ceremony he, his mother and Richard did for me on their tropical mountaintop. John is so close to my heart, I wanted to share his words here (forgive me, John, if I’ve overstepped…my love and gratitude for you is enormous).

Here is what John says:

Hello Karen, Hello everyone. I had been wanting to do a ceremony for Karen, my birthday mate, here in Costa Rica–the country that has declared peace on the world, and peace with nature. Today was the day. I went to the mountaintop property we have, a wonderful place to feel the energies of the earth and sky (lots of vultures). I was accompanied by my Mother and Richard. My mother’s Parkinson’s makes walking a bit of a challenge, but she’s a trooper, and linking hands we climbed the freshly macheted road. “Lions and tigers and bears” became “Boas, Ormigas(ants), and horse poop, Oh my!” Yes, our machete-er spotted a boa on the road, which is kind of cool, but sobering.

Safely on top, I opened up the sacred space with the South American medicine wheel I learned through Alberto Villoldo. Snake-South, Jaguar-West, Hummingbird-North, Eagle-East. Above-Father Sky, Below-Mother Earth, and Center. Things are done for the benefit of all my relations, which is just about everything. OK, it is everything.

Thoughts were of Karen, and we read the “Thank You” prayer that I wrote down from Jane Worth in Key West. The items were:

  • My new favorite knapsack–had to have it, may speak to fears and change.
  • A cosmopolitan–I have been making them recently (blame a crush on a bartender). I imagine Karen sipping away.
  • Incense.
  • Costa Rican wood bowl with red wine cork and a lime from our property.
  • A personal notepad and regular pen with a Tibetan thread design from Paris: I can’t tell you Karen how much it has meant to me to read your blog and to continue to feel connected to you. Thank you for sharing of yourself.
  • Organic Genmaicha from ArtfulTea…me gusta (sipping as I write)
  • And a note from Phil.

 

John and a Mountaintop Ceremony

John on the Mountaintop in Ceremony

Thinking I’d cut to the chase, I actually looked for some horse poop to put on the altar, but it was gone. The rains had washed it away. Thought that was a good sign.

 

Spirit seemed to honor the writing pen when this beautiful little butterfly landed on it…After a bit, Mom took a sip of the Cosmo in communion, and I poured the Cosmo on the mountain. I poked the incense into the lime and put it on a rock, and left some Genmaicha to steep in the rains. I closed up the sacred space and walked back down the mountain and saw four beautiful toucans (Collared Aracari) in the trees above our car, the first I’d ever seen here.

I invite anyone reading this to enter into the space as you will and send Karen some Costa Rican love. Pura Vida. Pure Life. Love you Karen. Thinking of you surrounded by beauty there. Dream yourself here if you like for a spell…

John and family…

Muchas Gracias, John. Love you!

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Now that the treatment is over, there are fewer appointments scheduled – but the next round looks like this:

  • Thursday Oct. 22 – Office visit with Dr. Fekrazad (blood work and follow-up on Xeloda)
  • Wednesday Oct. 28 – Pre-surgery office visit with Dr. Rajput
  • No date certain – Flexible Sigmoidoscopy (w/ Dr. Rajput, to assess my response to the chemo and radiation treatments)
  • Tuesday Nov. 24 – Colorectal Surgery @ UNM Hospital in Albuquerque

In addition to these appointments, I am still trying to find an Ostomy Nurse to meet with in advance of surgery. I’m told they can be invaluable in preparing you for dealing with a colostomy (the next big hurdle…).

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It seems a bit like trying to turn the QE2 around: once you initiate the turn, it still takes FOREVER to get the ship going in a different direction.

Patience required while waiting for the QE2 to make a turn...

Patience required while waiting for the QE2 (or anything this huge) to make a turn...

Finally, nearly two weeks after my last treatment, I’m beginning to feel this ship starting to move in a more positive direction. I’m happy to report I actually feel a little better, I’m getting stronger daily, and, thankfully, I’m spending more time out of bed than in it now. I’ve even gained a couple of pounds back, probably due largely to Linda Wheeler’s homemade Apple Cake – made with 4 lbs. of apples (from her orchard), plus walnuts, raisins, and just enough other stuff to hold it all together. I’ve been eating it warm, with half-n-half, for breakfast every morning, and often having another piece as a snack later.

Finally feeling a bit better has also gone a long way toward lessening my resistance to some things: I’m taking the Xeloda with something akin to acceptance now, and I’ve pretty much completely surrendered to the need to give myself a daily shot of blood thinner (not that it’s become any easier to do – it’s just become part of the daily regimen of things I do whether I like it or not). But the thing I’m most grateful for as I continue to improve is that I am no longer such an invalid and can once again do a few things for myself!

For the past couple of days, I’ve been able to get up in the morning and fix a pot of tea for myself again! I’ve been able to shuffle out to the birdfeeder to fill it with birdseed (my poor birds, who were so used to a regular source of seed, have for weeks now had to wonder where their next meal was coming from). And I’ve even been able to sit at my desk and work for short stretches of time! I’m certain the emotional lift of finally being able to do some things for myself again has helped me just as much as physically feeling a little better.

So, for the present, we’ve finally got this ship heading in the direction of complete health. The focus will soon turn to surgery, but in this moment I am happy to be feeling almost whole again – a different wholeness, to be sure – but whole nonetheless.

(Huge Thank You’s go out to those folks who have continued to support me by ordering tea! I’m deeply grateful. As you can imagine, the momentum for the business waned a bit once I began my treatments. So your show of faith in me has meant a great deal, not to mention some much appreciated income!).

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Disappointment

[Does it ever end?]

It turns out I am not done with the chemo. Yes, you read that right. I got the word yesterday that I’m to keep taking the Xeloda pills – one week on and one week off – until the surgery in November. I am beyond despondent…

From the very beginning, I understood the plan was to have six weeks of concurrent chemotherapy and radiation, followed by about six weeks of recovery time before surgery. The idea was to try to eliminate the tumor and all cancer cells during the six weeks of treatment. Then there would be a “window” during which I would heal from the chemo and radiation, and get stronger in preparation for surgery, but not let so much time pass that the cancer would have a chance to return. I understood the optimal “window” was about six weeks between the end of treatment and surgery.

When I met with the surgeon, Dr. Rajput, back in August, I had Shawn with me. We both clearly recall him saying the optimal time for surgery would be six weeks after the end of treatment.

Recently, Dr. Fekrazad asked me when my surgery would be. When I told him it wasn’t scheduled yet but that it was supposed to be about six weeks after treatment, he shook his head. No. That’s too long to wait, he said. The cancer may have time to come back if we wait that long…

I contacted Dr. Rajput’s office. His P.A. Anita confirmed, once again, that they wanted to wait six weeks. When I informed Dr. Fekrazad about this, his response was: “Well, then we’ll just have to keep you on the Xeloda until surgery.”

WHAT?!  NO!!!!!!

In a cancer treatment environment, one of the things patients have to hang on to are goals. Six weeks of chemo and radiation was my goal. Despite setbacks and illness and blood clots and yeast infections and starvation, I reached the f—ing goal! Towards the end, when I was so weak, Dr. Fekrazad offered to reduce my dosage or even skip the last treatment, and the radiation folks also offered to skip the last two radiation treatments. But I said no, I would finish the entire regimen as planned. It nearly killed me, but I did it.

Now, just as I’m beginning to experience the very first signs of recovery, I feel like the rug is being yanked out from under me. I feel betrayed. 

I’ve been back and forth between the two doctors. They’re both oncologists at UNM Hospital. Dr. Fekrazad is a “Medical Oncologist” (meaning, essentially, his job is the administration of chemotherapy). Dr. Rajput is a “Surgical Oncologist” (meaning he specializes in performing surgery on cancer patients). They’ve discussed my case. And they seem to have a slightly different point of view. Anita told me that it’s not uncommon for the medical oncologist to want the patient to continue chemo nearly up to the date of surgery. The surgical oncologists basically just want to be sure you’ve healed from the radiation before surgery, so they don’t tend to get involved or object if the medical oncologist keeps the patient on chemo for a while after the radiation is done. Gee, thanks everybody, for having a nice clear plan for me and then changing it at the last minute!

A handful of hell (they don't look that bad, do they?)

A handful of hell (they just don't look that scary, do they?)

Although my inner child is having one hell of a temper tantrum and won’t stop screaming “NO!”, I’m back on Xeloda for a week. I’m going to take it and see how I do now that I’m not also taking Oxaliplatin and having radiation treatments. Maybe I’ll find that it isn’t so bad…(yeah, right). Maybe in a day or so, when that screaming baby in me gets exhausted and cries itself to sleep, maybe I’ll be able to look at that handful of Xeloda and remind myself what a good job it’s doing of keeping cancer cells from returning. Maybe I’ll even be able to look at that handful of pills with gratitude.

At the moment, I’m just not that enlightened. But I’ll work on it.

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