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Archive for December, 2009

Sometimes I go about with pity for myself and all the while Great Winds are carrying me across the sky.

 – Ojibway Saying (quoted from The Book of Awakening)

The days leading up to Christmas must have taken their toll on me. We purposely made just super-simple plans for Christmas Day, but even those proved to take more energy than I had. It was just Mom and Tim and me for the day, and all I planned to do was make waffles for breakfast before we sat around the tree to open our gifts. Later, we would drive to Las Vegas (New Mexico, not the glitzy one in Nevada) for dinner at the Historic Plaza Hotel and then enjoy the lights of the Victorian neighborhoods surrounding the old town before heading back home.

But the morning was a rough one for me. I decided to change the ostomy bag by myself – with no supervision from the home nurse who’s been coming weekly. I encountered some minor problems (bleeding, raw skin, etc.) and without the nurse there to reassure me that all was normal, I found myself getting more agitated by the moment. After what seemed like an inordinately long time, I finally emerged from the bathroom too exhausted to prepare breakfast. Tim took over the kitchen duties while Mom and I sat by the fire. I was also experiencing more pain from sitting on the wound on my bottom, so I wasn’t in a very festive mood as we opened our gifts.

Eventually, we bundled up and headed out for our drive to Las Vegas – me with my ever-present pillow to sit on. It was a nice, clear day and the hour drive went quickly. Dinner at the Plaza Hotel was a bit of a disappointment, but we all agreed it was more about the outing and being together than about the food. But, by the time we began the drive home, I was rapidly sliding downhill. No amount of pillows were able to make me comfortable. I got crankier and crankier squirming in the passenger seat until Tim thought to ask if I had any Percocet stashed in my purse. Hallelujah! Yes! One little pill tucked away for emergencies just like this!

As soon as we got home, I immediately took up residence on the sofa, drifting around in a bit of haze until bedtime. I tried hard to remember all that I have to be grateful for (and there is so much!), but I have to admit as I laid there on the couch I was feeling a little sorry for myself.

So, on Saturday, I finally accepted that it was time to simply rest. I spent nearly the entire day lying on the sofa reading Barbara Kingsolver’s new novel The Lacuna. It was just what this frail bag of bones needed – a finely woven tale to take me away from myself and my little world. By evening I was thankful to feel more restored than I have in a while.

Tomorrow (Monday), I will have another ultrasound to see if the blood clot that once ran from my clavicle to my elbow has finally “resolved.” If so, I’ll have the port removed from my chest at 1:00 PM. If the blood clot hasn’t dissipated enough, I may have to wait a bit longer for the port to be taken out as they don’t want to risk disturbing the clot during the port removal procedure. We’ll know more tomorrow!

On Wednesday, I have an appointment to see my surgeon, Dr. Brown. The home nurse says I will get a good report (she thinks all the wounds look like they’re healing properly). I am most interested to ask him when I’m likely to start feeling like myself again!

And, on January 14th, which will be exactly six weeks after my surgery, I’ll begin taking the Xeloda again (with faith that it will assure a healthier 2010).

My New Year’s wish for each of you is that, like me, you’ll be bowled-over to find just how deeply loved you are by so many others (without the need to become ill to learn this!), and that you’ll take full advantage of the good health you now have to live just as fully as you can dream up!

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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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The Lord giveth and the Lord hath taken away…[Job 1:21]

In the world of cancer, it seems things can change so rapidly it’ll make your head spin. Tuesday’s wonderful news that I’m cancer-free provided almost 24 hours of pure happiness and gratitude. I spent that afternoon phoning my dear friends and family to tell them the good news and to share their relief, which was almost as huge as mine. And, of course, I followed my doctor’s orders by celebrating that evening with one glass of champagne – that quickly went to my head!

But, unfortunately, the pure joy was interrupted the next morning when the phone rang and it was Dr. Fekrazad. He sounded sheepish as he told me he hadn’t slept the night before for thinking about my case. He’d phoned some colleagues in other countries (Germany and France, I think) to get their take on my situation. He said that, after further consideration, he’d like me to come back in to talk to him – could I be there at noon?

Somehow, I held it together pretty well even though I knew what the meeting would bring. Tim drove me over to the Cancer Center, where we bypassed the exam rooms I normally see Dr. Fekrazad in, and instead were taken directly to his office. He proceeded to tell me that, while it’s still great news that I responded so well to treatment and surgery (“no cancer remaining”), after more research and discussion, he now felt I might benefit from another course of chemotherapy. He said there really is no right answer, but his European colleagues felt more chemotherapy would be added insurance against experiencing a relapse. Apparently, the statistics he’d relied on the day before were “not complete” and at least one other doctor he spoke to was emphatic about ordering more chemo in my case.

Nonetheless, he wanted the final decision to be up to me.  He laid out three options:

1. Do nothing – other than continued monitoring every three months as originally planned;

2. Full therapy – Xeloda (oral chemo) taken two weeks on and one week off, plus Oxalyplatin (chemo infusion) once every three weeks, both for a total of six months; or

3. Xeloda only (with no chemo infusions) – taken two weeks on and one week off for six months.

Dr. Fekrazad had told me when I first met him that he also treated his own mother for colon cancer (she was Stage 4 when it was discovered) and she’s been cancer-free for nearly 3 years now. He reminded me at this meeting that he put her on Xeloda for 9 months after her original treatment and surgery. He admitted that he wasn’t sure whether he’d been treating her or himself when he had her keep taking it. But he ended by saying, “If you were my sister, I’d want you to do more treatment.”

So, I’m reeling a bit from this revised information. I haven’t decided yet what I will do. A part of me intuitively believes that my chances of a recurrence won’t be any different with more chemotherapy. I’ve already begun adopting many of the recommendations of the cancer nutritionist I’m working with (whose plan for me is based entirely on scientific research that indicates a specific benefit for people who’ve had colon cancer). I also feel strongly that my attitude and lifestyle choices will help prevent a relapse as much as any treatment I might do.

But the “rational, conscientious” side of me is whispering: why not at least take the Xeloda and see how it goes? I won’t be having concurrent radiation therapy as I did before, and nearly every one of my healthcare folks has said that’s probably what made me so sick. Dr. Fekrazad has also said if after some weeks or months I’m not tolerating it well we could simply stop the treatment. So what would it hurt to try it?

A portion of my dilemma is merely emotional: I was totally prepared on Tuesday to hear Dr. Fekrazad say he’d like me to do more chemo. If he had said it that day, I’m pretty sure I would have simply replied, “Okay, when do we start?” But having gotten on the rollercoaster of thinking I didn’t need more treatment, plus telling the whole world my fabulous news, it became much harder to swallow this new setback. I even delayed writing about it here (or talking about it with those closest to me) because I really didn’t know what to say and, truthfully, I just don’t want to deal with it right now! I’m still very much in the midst of trying to adjust to life with a colostomy (I’ve had no choice but to get very intimate with “my shit” these days). It’s also early in my recovery period from major surgery, so I’m still managing pain both in my abdomen and my butt. With all that I’m coping with at the moment, I’m just not in the best frame of mind to make a big decision about further treatment. I’d actually like nothing more than to pull the covers over my head and pretend none of this is happening right now – and live in the illusion (at least for a short while) that I’m going to wake up and have my “pre-cancer” life back, complete with yoga, wine, travel, work, gardening, creativity and the energy to do all of it.

But, that’s not the path I’ve been given to travel yet. I trust I’ll be guided to make a decision that’s right for me. I know that the same great Spirit that’s held me up throughout this entire journey isn’t likely to forsake me now. A few more tears may need to be shed before I can find my way, but I know I will.

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I just got home from my office visit with Dr. Fekrazad. He was all smiles as he waltzed into the exam room with a copy of my pathology report from the surgery. His P.A. Cynthia was right behind him with a big grin, too. Silly me, I thought they were just happy to see me doing so well only 12 days after major surgery. It actually took me quite a while before I understood why they were so gleeful.  But the phenomenal news eventually landed on me: There’s no evidence of cancer and no need for more chemotherapy!

Perhaps I’m just dense at various times, but as he was discussing the details of the pathology report with me, I was just certain he was about to drop the bomb that I needed another round of chemo. I had even shed some tears this morning right before heading out the door for the appointment because I was so wrapped up in anticipation of hearing those words. So, when he had me follow him out of the exam room and into his office so we could all look at some statistics on his computer, I became really confused!

He pulled up a screen and plugged in some figures pertaining to me (age, sex, depth of cancer invasion [T2], lymph node involvement [N0], histologic grade [gr. 3], etc.) and two graphs appeared indicating the percentage of patients with my exact circumstances who relapse within five years. One graph was for patients who had no additional chemotherapy and the other was for patients who had additional chemotherapy. The figures for both graphs were identical! The bottom line was: there is a 10% chance of recurrence over the next five years whether or not I have more chemotherapy. Another screen showed a 7% chance of mortality (death) within five years, again whether or not I do more chemo. Sobering info, yes, but I finally understood: the pathology report was saying my prognosis is as good as it can possibly be. I have about the same chance of dying from a recurrence of cancer during the next five years as I do of dying from any other cause! I sat there staring at the computer screen in stunned silence. Then, Dr. Fekrazad hugged me and said, “Go celebrate! Have some champagne tonight! I’ll see you again in 3 months!”

As I prepared to leave the cancer center, I stopped and hugged everyone I saw! Each nurse, each healthcare worker, each doctor I saw who had helped get me to this day got a big hug and a tearful smile. I am so grateful for the exceptional care I’ve received over the past six months. And I know in my heart that every one of you has also contributed to my healing – through your positive thoughts and prayers, visits, food preparation, hand-holding, and every other form of love you offered. So, here’s a virtual big hug and tearful smile for each of you! Thank you! Thank you!

Time to Celebrate!

I’m going to take Dr. Fekrazad’s final orders very seriously and crack open that bottle of champagne this evening. I’ll be lifting a glass to my health and then to all of you for your love and support. Join me in spirit or in reality if you will.

Wonderful news aside, we’re not done yet! I have follow-up visits with Dr. Brown and I’ll be getting an ultrasound to see if the blood clots in my right arm are gone. When I get that all clear, they’ll finally remove the port-a-cath from my chest. Plus, I’m still adjusting to the colostomy experience and will have more to say about that very soon. So, stay tuned for further blog posts over the coming weeks…you see, you can’t get rid of me that easily!

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So, today is my third full day back at home after having major colon surgery. I have to keep reminding myself of this fact because my recovery has been going so smoothly! I’m up and around all day – not bedridden as I imagined I might still be at this point – and I’m able to do all kinds of “normal” things like showering, eating (anything I want), and evening sitting at the computer for short stretches of time.

My lovely friend Kate is here. We originally arranged her visit so she could help take care of me during my first days of recovery at home, but it turns out her job seems to be trying to keep me from doing too much! She scolds me when I forget to let her fix the tea or make the bed. But I have left all the cooking to her (I’m no fool) and we’ve had yummy homemade chicken soup, a delicious pasta dish with leeks, shallots, onions and tarragon, and a spectacularly cheesy chicken casserole of the combined leftovers. We’ve also had the good fortune to enjoy another of Shawn’s wonderful apple crisp dishes (it could well be the most mouthwatering dessert on earth!).

You can’t really be anything other than joyful when Kate is around. She’s always singing or laughing or simply enjoying the beauty of life. I had a few “woe-is-me” moments when I first got home, and after she listened with deep compassion and wiped away my tears, I somehow found myself smiling along with her in no time. Yesterday, we brought home a beautiful Christmas tree and set it up in the living room. Tim laid one of his amazing fires in the fireplace, as only he can do (really, he’s got a talent at building the best fires). We played Sting’s new CD If on a Winter’s Night and I watched from the couch as Kate began working her magic stringing lights on the tree. As I sat there listening to her hum in harmony with the music, I realized once again just how much I have to be grateful for.

I am, of course, still adjusting to my new “appliance” and waiting for my body’s rhythms to settle into some sort of recognizable pattern. I’m told that, because I have a sigmoid colostomy, I will eventually have completely normal stool (I still have all of my large intestine so my digestion functions just like anyone else’s), but for now I’m still experiencing very loose, watery bowel movements that make it difficult to empty my ostomy bag without making a pretty big mess of things. During my first shower at home, I got brave and decided to use the opportunity to “clean the bag out” with the shower spray. I ended up with shit sprayed all over the shower walls and shower curtain. I had forgotten also that my bathtub drains slowly and so found myself standing in watery shit. For a few minutes I came close to throwing a little temper tantrum, but then I heard Kate call from the other side of the bathroom door, “Was your shower wonderful?” I paused a moment, took a deep breath, and replied, “It had it’s moments.”

A home healthcare nurse came by yesterday to check on me, too. We spent much of the time she was here doing paperwork. She took my vital signs, looked at the incision on my abdomen, and talked to me about my comfort level with caring for my colostomy. We agreed she’d visit again next Tuesday to observe me as I change the bag on my own for the first time. She was actually about to leave when I said, “Did you want to take a look at the wound on my bottom?” Her face registered surprise as she realized I’d also had my rectum removed during the surgery (many folks with colostomies don’t require a total removal of the rectum as well, but since that’s where my tumor was it had to go). She said, “No wonder you were being so ginger about sitting down!” She took a look and echoed what everyone else who has examined my incision has said, “Wow! They did a beautiful job!” (Apparently Dr. Brown’s partner Dr. Dudley, who assisted in the surgery, is quite an artist with his wound stitching.) I haven’t personally taken a look yet myself, but one of these days I’m sure I will.

I’m sure there will be more gory details to tell over time, and in the spirit of being authentic about my journey I’ll continue supplying honest reports as I adjust to this next phase. Thank you once more for your constant love and support, without which this would have been a very different kind of experience.

Next week I have an appointment with Dr. Fekrazad again. I’m sure the main topic of discussion will be the results of my pathology report and whether or not I will undergo another round of chemotherapy. Fingers crossed that I may not have to do that again…

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Home Again!!

I’m HOME!

It’s been a long day and I’m pretty pooped (oh, sorry…), but I wanted to let you all know that I finally left the hospital and I’m home again. I’m feeling OK, but not great. I wouldn’t really say I’m in PAIN – just kind of uncomfortable, like maybe I’ve just had my intestines rearranged. Mainly, I’m ready to get a good night’s sleep in my own bed.

Tomorrow, after I’ve had a nice warm shower in my own bathroom, I’ll write a more thorough update. Meanwhile, a gigantic super-deluxe hug to Alison for hanging out in the hospital for five full days (including sleeping three nights on a fold-away chair/bed so she could watch over me) and for every other large and small thing she did to help me through this. Another huge hug to Kate for her help over the last few days and in the coming days as I adjust to my new routines.

Time to rest. Thank you all for your thoughts and prayers. More soon…

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Marathon Girl

As hoped for, Karen was freed of her remaining tubes this morning. She was pretty darn happy about that and was given permission to take a shower.  Karen advised that the shower was lacking in the accoutrements we all would hope for at this stage (i.e., it was hand held drippy kind of shower head), but it certainly beat another sponge bath.

The real “wow” of the day is that Karen (aka “Marathon Girl”)  is booking down the hallway. We’ve taken three major walks around the floor.  We got lost on the first trip – which led us into the “Ritz Carlton” section of the floor. All this time we thought we were in nirvana as Karen has a private room -little did we know that there’s a really really spiffy section on the other side – gargantuan rooms, with beautiful views of the mountains, built in couches, etc.  We had a good laugh about our “slumming” it over here on the other side.

As we walk along, we’re thinking of our future years together as old ladies perhaps taking a stroll along the boardwalk in Miami Beach – although we’ve lost our northeastern accents at this point and probably won’t fit in very well over there. But we’re working on where it might just be that we can grow old together and continue to share strolls together.

Shawn came to visit today and we shared some more  laughs with Karen about Mount Vesuvius (which is how Karen is currently referring to the ostomy -we’re all anxiouslyand eagerly awaiting its eruption).

It’s great to see Karen getting stronger by the minute – anticipate she’ll be heading home shortly. Kate comes in tonight as my replacement. Karen is so looking forward to her visit.  I am sad to leave, but I am so comforted by the support team Karen will have with Kate and the Santa Fe angels, Shawn and Nataysa.

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