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Posts Tagged ‘adjuvant chemotherapy’

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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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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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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