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Archive for the ‘Appointments’ Category

Shame on me for not posting anything in August! It was such a monumental month for me in 2009, but – happily – August 2010 was uneventful, at least health-wise.

The best part of the whole month was spending five glorious days in Ouray, Colorado with five beautiful women who’ve been like sisters to me (we all worked together at Kindred Spirit in Key West and have since scattered ourselves around the country). All of us have not been together at the same time for more than three years, so it was quite a reunion! It was also the first time I’ve been away from home since before I was diagnosed last summer. So, as you might have guessed, the trip was very healing for me – mentally, emotionally, and spiritually, if not physically (considering the quantities of beer, wine, Margaritas and Bloody Mary’s that were ingested).

The Kindred Spirit Goddesses - Karen G., Carol, Michelle, Karen H. and Kelly - in front of Michelle's adorable little shop "The Blue Pear" on Main Street, Ouray, Colorado

Now that more than a year has passed since my diagnosis, it’s time to start having a bunch of annual tests done to make sure I’m continuing to be cancer-free. The first is a CT Scan, scheduled for Tuesday, September 7.  I had blood drawn today at Christus/St. Vincent Hospital in preparation for next week’s scan.Getting more blood work done...

Then, on Monday, September 27, I’ll have a colonoscopy. I’m a little nervous about it since it will be the first one since my colostomy. They’ll perform the exam by going in through my stoma – which doesn’t seem like it would be all that bad, but it’s still kinda scary since I have yet to put anything in there! Plus, if you’ve ever done the prep for a colonoscopy, you know how, uh, explosive it can be. I’m not exactly looking forward to that new experience with my colostomy either!

After those two tests are complete, I’ll see my oncologist Dr. Fekrazad again to go over the results. In the meantime, I have an appointment on Friday with my surgeon, Dr. Brown, who checks me out every three months – whether I need it or not!

The only other “medical” thing going on is that I’m now seeing a physical therapist who is working with me on the urinary incontinence issues that have developed as a result of the radiation, chemo & surgery. Heather is an amazing therapist who is using bio-feedback techniques together with exercises in our sessions. I’m reluctant to admit that I haven’t been doing my “homework” as often as I should (she’s given me specific exercises to do daily at home), so I haven’t seen the results that I know are possible. I guess I’ve gotten a bit self-indulgent after a fairly challenging year, and I let myself off the hook occasionally.

But, all-in-all, things are good. I’m gardening, practicing yoga, working, creating, eating & drinking. What more could I ask?

I’ll keep you posted on the results of the tests as soon as I have them.

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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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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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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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I’ve just gotten a few friendly messages along the lines of “more blog posts please” and “ok, how are you doing now?” I was about to reply that there isn’t much to say as I’m currently in a kind of calm before the storm – but I guess that’s exactly the thing to write about.

It’s been about ten days since my last medical appointment. I’ve been grateful to have some time to get work done, tend my garden, and organize my life a bit. (Oh, who am I kidding, that’s not nearly enough time to actually accomplish organizing my life!) In a few days I’ll begin a series of procedures and appointments in preparation for the daily chemo/radiation treatment that’s scheduled to start on August 19th. Since I don’t really know what to expect once I’m into the full-fledged treatment, I’m trying to make the most of my time now – while I still feel pretty good.

This Tuesday I begin the cleaning-out process for the Trans-rectal Ultrasound on Wednesday. It’s a special kind of internal ultrasound that will determine the extent of the tumor and help “stage” the cancer. It requires prepping almost exactly as you would for a colonoscopy. So, I’ll be back on clear liquids for the third time in a month and drinking that delicious “GoLytely” once again. My dear friend Shawn is driving me down to UNM in Albuquerque early Wednesday morning where I’ll be sedated for the procedure. I don’t expect to be given much info about the results immediately, but I should hear something within a few days.

Then, on Thursday, I’m on an all new diet plan! In preparation for Friday’s PET scan, I’ll be deprived of glucose for 24 hours beforehand. An hour or so before the scan they’ll inject me with glucose. Apparently, cancer cells really like glucose and will suck it up rapidly after lacking it for a while. The PET scan will reveal “hot spots” wherever glucose is concentrated. So, if the cancer has spread to other organs or tissue (besides where the known tumor is), the scan will reveal those areas. I’d appreciate your prayers that there’s no cancer elsewhere, please!

Those two tests are supposed to give Dr. Fekrazad the info he needs to determine what stage I’m at.  The stage will tell us what the prognosis is. I’ll meet with him on the 12th to review everything and to discuss the protocol for my treatment. That same day, I’ll have a “Chemo Teaching” session with one of the nurses at the Cancer Center. I assume I’ll learn all sorts of things I never wanted to know during that hour. Following that, I have a “CT Simulation” which I understand is when they make a mold of my pelvis for use during the radiation treatments. I’ll sit in the mold for each treatment so that I’m in the exact same position every time. And I’ll get these nifty little tattoos that they’ll use to aim the radiation at the correct location.

The following Monday, the 17th, I’m scheduled for out-patient surgery to have the chemotherapy port installed. For some irrational reason, this is the thing that terrifies me the most. I guess it’s because it requires inserting a tube in my chest that will go directly into an artery – and leaving it there for the duration of my treatment! Plus it means another anesthesia (which we all know didn’t go so well last time I was supposed to have an “out-patient” procedure!). But nearly everyone who knows anything about this stuff has said, “Yes, get the port.” And, after the difficulty they had trying to draw blood from me recently, it could be a fiasco if they have to stick me each time I have a chemo injection. Not to mention the very unpleasant problems that result if the vein collapses and the chemo gets into the tissue in your arm (apparently it’s very painful and the affected arm tissue will die).  So, I’m getting the port. Dear Natasya has agreed to be with me for that ordeal.

Two days later, on the 19th, I’ll experience my first chemo and radiation treatment. They’ve blocked out 4 and 1/2 hours for that first treatment since I’m “chemo naive” and they’ll be administering it very slowly.  My friend Mary Anne has bravely accepted the challenge of spending nearly that whole day holding my hand.

My long-time pal Alison is flying in on the 20th for the weekend following that first treatment. I hope I get to spend some time with her that doesn’t include leaning into the toilet. But I know she’s coming to hold me and help me through this…

So, as I said, I’m in that calm space before the hard stuff begins. One thing I’m doing with this time is saying many, many prayers of thanks for all the amazing people who have reached out to let me know they care, who have offered their help (both near and far), and who are saying their own prayers on my behalf. I am filled with awe at the many ways I’m being shown how much I’m loved.  Thank you to each and every one of you.

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Upcoming Appointments

For those of you who want to know what’s scheduled to happen when with treatment, here’s a list of my upcoming appointments and procedures.  (By the way, I’ve learned already that these things are subject to change quickly).

  • Wed 8/5 @ 9:00 – Ultrasound at UNM in Albuquerque (this is to help “stage” the cancer)
  • Fri 8/7 @ 9:30 – PET Scan @ X-ray Associates in Santa Fe (another piece used in “staging”)
  • Wed 8/12 @ 10:30 – Office Visit w/Dr. Fekrazad @ Cancer Center in Santa Fe (he’s the chemo guy)
  • Wed 8/12 @ 11:30 – “Chemotherapy Teaching Session” w/nurse @ Cancer Center
  • Wed 8/12 @ 1:00 – “CT Simulation” @ Cancer Center (to create a mold of my pelvis for use in radiation treatment)
  • Mon 8/17 @ 10:00 – Out-patient surgical procedure @ St. Vincent’s Hospital to have the chemotherapy “port” placed (near collar bone)
  • Wed 8/19 @ 10:30 – 1st Chemotherapy Treatment (4.5 hrs) simultaneous w/ first Radiation Treatment

Thereafter: Radiation every day (5 days per week) for 5-1/2 weeks, simultaneous w/ weekly chemo treatments

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