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Archive for November, 2009

I had another wonderful gift this week: my dear friend Kelly surprised me with a visit! Last Sunday morning, I picked up the phone to hear that Kentucky accent say, “Can you pick me up at the airport tomorrow?”  Umm, you bet I can! What time?

Turns out we haven’t seen each other in over two years (shame on us!), so it was quite the reunion. I was really happy her visit coincided with me feeling pretty good – not to mention that she and I have a long history of dining out together and loving to eat!  So, since I’m still trying hard to gain weight before surgery, she was the perfect person to inspire me to eat (and eat, and eat).

Our first stop was The Shed for green chile enchiladas. I was a tad nervous about putting green chile into my system again, but I decided just to go ahead and live on the edge! That first bite was a little shocking (I haven’t had anything remotely spicy in months) but the rest of the meal was so delicious I nearly finished the whole enormous plate! And, thankfully, I didn’t seem to have any trouble with the green chile later either!

We proceeded to eat our way around town over the next few days:

  • Back Street Bistro – phenomenal Hungarian mushroom soup and (for later) amazingly delicious sour cream nutmeg cookies
  • The Tree House  – breakfast burrito (made with local farmer’s market ingredients) – plus a cinnamon roll to go
  • Whole Foods – St. Andre cheese, country pate, grapes, olives, crackers, and pasta salad as a “picnic” while watching chick flicks on DVD
  • India Palace – chicken tikka masala, saag paneer, samosas, rice, and garlic nan
  • Downtown Subscription – Mexican hot cocoa!

On top of all that, there was Thanksgiving dinner! My mom fixed a super-moist (organic) turkey with stuffing and gravy. We added homemade cranberry sauce, mashed potatoes, asparagus, Waldorf salad and – of course – a pumpkin pie. So, as you can tell, I didn’t exactly go hungry while Kelly was here…

St. Francis Cathedral Labyrinth in Santa Fe

We managed to squeeze in some other fun besides eating. We walked the labyrinth at St. Francis Cathedral on Thanksgiving morning. We discovered some sweet Christmas gifts at one of my favorite consignment shops, Recollections. We watched movies, read magazines, and chatted by phone with our Kindred Spirit goddesses (Carol, Michelle, Karen H, and even Clare – in Ireland!). All-in-all, it was a lovely visit, with a good balance of recreation and relaxation. Just what the doctor ordered!

Thank you, Kelly, for the truly wonderful and very healing visit. Sure do love you!

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Wow! My last post about the visit to the ostomy nurse really generated a flurry of fabulous comments! You guys are all so incredibly supportive and loving – I swear I couldn’t get through this without you. I’m truly grateful for all of your kind thoughts and especially your prayers.

I’ve been meaning to tell everyone this for a while now: from my end of the blog, I’m able to pull up one big long list of all the comments ever submitted. Sometimes, when I’m feeling like I need a boost, I hop online and just sit there re-reading everybody’s comments, all the way back to the very first post in July. When I do, I inevitably end up all weepy and overwhelmed with gratitude. It’s like having everyone of you around me in a big group hug!

So, I mostly wanted to say THANK YOU for every bit of love and encouragement and support you send. And not just in the form of comments to the blog, but in the many ways you each show you care: email messages, phone calls, greeting cards, homecooked meals, thoughtful gifts, visits, and more. I’ve been blown away by the continued out-pouring of love that comes my way daily.

Many of you have expressed your thanks to me for writing about what I’m going through, which always takes me by surprise. I had no idea when I began this that anyone beyond my family and a few close friends would want to read it and follow my progress. So I’ve been pleasantly shocked by the sheer volume of folks who seem to be interested in keeping up with my story. But more than that, I never could have imagined how healing it would be for me to put my experience onto the page (not to mention sending it out for the world to read). Simply voicing my fear and anger and despair has actually kept me going at times when I thought I wanted to “give up.” And having a way to share all my small and large victories has truly made them even sweeter.

So, thank YOU for going on this journey with me, for holding me up when I needed it, and for cheering me on throughout.

P.S. – My pre-op appointment at Presbyterian Hospital went very smoothly yesterday. Thank you to Shawn, once again, for driving me to Albuquerque and sitting with me as I was poked and prodded, X-rayed and EKG’d. All of the healthcare folks I saw were professional and efficient. There was even no problem getting blood from me (thank goodness!) and we were done with the whole appointment in about an hour-and-a-half .

"Walk on the Wild Side" Carrot Cake at the Flying Star Cafe

Which left plenty of time for us to have a nice lunch at the Flying Star Cafe. I had “comfort food” (homemade mac-n-cheese, creamy tomato bisque soup) while Shawn ate the very healthful vegetarian “Winter Stew.” Okay, I also brought home a big slice of carrot cake for later. And was up to 110 pounds last night!

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Yesterday I went down to Albuquerque for my first visit with an ostomy nurse. Tasya went with me and, as usual, when I was struck mute by the overload of information, she jumped in and asked the questions that needed asking.  Thankfully, she’s had some experience with colostomies, with both her mother-in-law and her aunt having them! So she knew to ask all kinds of details I had no inkling about.

Besides getting some education about living with a colostomy, the main reason for this appointment was for Carla, the ostomy nurse, to mark the spot for the surgeon to place the stoma. In order to find the optimal place on my body, she had me stand, sit in a chair as I would normally, slouch in a chair (as I would when relaxing), bend over like I was picking something up off the floor, and generally move around as I normally do. She observed carefully as I did each of these things several times, then she placed a mark on my belly and had me do everything all over again. Carla watched the mark closely as I repeated each of the movements, then announced, “I like it.”

"X" marks the spot

I laughed and said I was glad she liked it! Any chance I was ever going to like it?  Throughout the appointment, she was really very kind and told me over and over that I was going to do just fine.

She also spent some time showing me several different “bag systems” so I could get an idea of the many options out there to choose from. Carla said they’d work with me over time to find the system that seemed right for me. Of the bags she showed me, I naturally gravitated to the “Cadillac” of the group! (If you know me at all, you’re now thinking to yourself: of course she has to have the most elegant version, even in ostomy bags!)

I also learned a little something about stoma caps. Carla seemed to think I would be a good candidate for eventually trying a method of irrigating daily (essentially an enema given through the stoma) and then wearing a “cap” instead of a bag. I really liked this idea – but we also discussed that I would have to see how things went with a bag for a while and work toward the cap option over time. With a colostomy, you really have no control over when elimination is going to occur, hence the need to wear a bag all the time. But, apparently by irrigating daily, it’s possible to train the body to eliminate at the same time each day and then not need to wear a bag constantly. Hey, you learn something new everyday!

Tasya and I left there with an armful of literature, samples, catalogs and even a DVD for me to watch (honest to God, it’s called Ostomy Educational Theatre. Betcha won’t find that at Netflix!). We quickly dumped everything in the backseat of the car and high-tailed it to Starbucks.

On Friday I have my pre-op appointment at Presbyterian Hospital, where they’ll do lab work, take X-rays and do an EKG – all to make sure I’m healthy enough to have surgery. It will be my first chance to see how I like the hospital I’m going to spend about a week in soon.

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I finally have a new date for surgery: Thursday December 3.  I’ve decided to go with Dr. Brown instead of Dr. Rajput and UNM (no big surprise there if you’ve been following my saga) and I’m happy with the choice. Dr. Brown’s office has been so accommodating and efficient – they’ve actually done everything they said they would! A refreshing change from my experience with UNM…

The surgery will take place at Presbyterian Hospital in Albuquerque. It’s scheduled for 12:30 and should take about 3 hours. I’m told I can expect to be in the hospital for at least five days, and perhaps longer if my recovery is slower. My dear friend Alison is coming to be with me and to act as my advocate during the hospital stay. I couldn’t ask for a better person to keep a watchful eye on the doctors and nurses, and to make sure I’m cared for properly.

Once I get home, my sweet friend Kate is coming to act as nursemaid for a week or so.  Again, I couldn’t hope for anyone more nurturing to take care of me while I convalesce. My other angels, Shawn and Natasya, will also be looking in on me as they have throughout this entire ordeal. I understand I’m going to be pretty uncomfortable for about a month after the surgery, and probably on pain killers for much of that time. Dr. Brown has said that, overall, it could be 8 to 12 weeks before I’m feeling like “myself” again. So, it looks like it’s going to “take a village” to help get me through this next part of the journey.

It’s odd, but for a short time while the date for surgery was up in the air, I was able to live in a sort of irrational illusion that it wasn’t going to take place at all – that somehow I wouldn’t have to go through with this. Now, with a firm date, I’ve had to let go of my denial and accept that it really is going to happen – and soon. I’m pretty nervous about it. The prospect of living the rest of my life with a colostomy is not something I’m surrendering to easily. And I’m also really anxious about the long recovery and the level of pain I’m likely to be in afterwards.

Nearly everyone who knows anything about colon re-sections, ostomies and such, has told me that I’ll adjust over time. I keep hearing that many, many people live rather “normal” lives with ostomies. I’ve already received lots of information and can expect even more education during my hospital stay. A few friends have also given me the names and contact information of others they know who are living with a colostomy, in case I want to ask questions or just talk to someone who’s been through this. I’m so grateful for all of the support I’m getting – and yet I’m still nervous.

But, as my doctors have repeatedly told me, the priority here is cure. In order to have the best chance of long term survival, I need to be willing to give up a little function. I’ve been working hard on accepting this, realizing that resisting it won’t benefit me in any way. But I have to admit, I’m still struggling a bit with this one.

Meanwhile, the really good news is that I’m feeling well right now, eating a lot, gaining some weight back and getting stronger everyday. And I’ve got almost three weeks left to continue regaining my health, and to also work towards finding some peace within myself.

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First things first: I’m finally feeling better!!

It took a few days before I was willing to say it out loud as it seemed like every time I dared to utter those words before, I’d immediately get smacked down with some new crisis. But I think I can now safely report that I’ve been steadily improving. I’m able to talk again and swallow without difficulty, so I’ve finally begun eating again. Once I was able to swallow normally, it still took some days before I could get more than just a few spoonfuls of food down without feeling ill – my digestive system seemed to have shut down completely and simply would not accept food easily. However, with the help of my “angels” Shawn and Natasya, who kept preparing and delivering meals, I’m back to regular amounts of food now. I’ve even gained a couple of pounds back (although that’s not really saying much – I was only up to 106 today).

Scale(sm2)

Karen at 106.0 lbs

In the midst of all of this, though, the universe provided a rather miraculous gift: Only hours after my last post about wanting to find a new surgeon, but thinking how unlikely it would be, it actually happened!

It turns out there is a private group of four doctors in Albuquerque who do nothing other than colon and rectal surgery. I gave Dr. Fekrazad their info late last Wednesday and he immediately contacted them on my behalf. Their second-most senior surgeon, Dr. William Brown, agreed to see me the very next day! Tasya drove me down to Albuquerque early Thursday morning and sat with me while Dr. Brown took nearly two hours to go over every detail of the surgery itself, what I could expect during the hospital stay and then the recovery at home, the possible problems that could arise, the education and adjustments I would need in order to live with my new “appliance” (referring to the colostomy), and much more. We even discussed genetic testing, nutrition, wound healing, and a few other topics I wasn’t even aware were an issue for me.

To say I was overwhelmed with all the information he provided is a bit of an understatement. It’s taken me several days to absorb all that I learned in that meeting. But, despite being somewhat shocked by it all, I’m also grateful to finally know with more certainty what I’m facing next. I had told myself during the weeks of chemo and radiation treatment that I would get through that part before I started letting myself worry too much about the details of the surgery. But, once the treatment was over, I knew it was time to start preparing myself for what would come next. Then, unhappily, I kept being put off by Dr. Rajput’s office at UNM whenever I requested an office visit to ask my questions about the surgery. So, when Dr. Brown’s office responded so promptly, and he was so thorough and direct with me about everything, I was at least relieved to finally get my questions addressed.

I’m impressed enough with Dr. Brown to believe that he would be a very good choice to handle my surgery. The only tiny detail to be worked out now is a date. It looks like it’s not possible to do it before the first week of December, and after much discussion about timing (it will end up being about nine weeks after my treatment ended), I’m getting more comfortable with the time frame. Besides, it looks like I could use every minute of the next three weeks to regain some strength and weight in order to have the best chance of a smooth recovery. So, assuming Dr. Brown’s office can get the surgery date scheduled during that first week of December, I’ll be going with him instead of the folks at UNM.

Stay tuned for more (but let’s hope it doesn’t get any more dramatic than it already has…). Also, keep a good thought for me as I try to stay well enough in the coming weeks to add a few pounds!

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Off on a Rant…

Okay. This is definitely going to be a bit of a rant. I’m disappointed, outraged, concerned, and incredibly ticked off – and this seems like a better place to express that anger than, say, randomly shooting people at UNM Hospital.

First I want to point out that, from day one, I have had nothing but praise for St. Vincent’s Cancer Center in Santa Fe and it’s staff. I’m very grateful to have had a place close to my home that provided professional, yet personal, care. And I believe I’ve generally gotten very good treatment there. (What follows is not a reflection on them.)

On the other end of the spectrum, every experience and interaction I’ve had with UNM Hospital and UNM’s Cancer Center in Albuquerque has been a disaster and a disappointment. At every turn I’ve been treated like “one more patient” to manage, if I was lucky enough not to be ignored. Their communication with me has been abysmal, with appointments cancelled and rescheduled at the last minute (routinely) and “courtesy calls” coming in a day before procedures I wasn’t even aware I was to have.

But this latest turn of events takes the cake.

I was supposed to see “my surgeon” Dr. Rajput today at UNM. That appointment has been cancelled (once again). I have just been informed that Dr. Rajput cannot do my surgery on November 24th as scheduled. Without any discussion or seeming concern for the risks involved for me, they are now postponing my surgery until December 7th. To add insult to injury, I was then told I could see Dr. Rajput for my “pre-op” visit on December 2nd! When I objected vociferously to the short amount of time between the office visit and the surgery (giving me no time to digest the information about surgery that I’ve been waiting months to be able to ask), they agreed to move my office visit up to November 25th.

All of this is totally unacceptable to me and to my medical oncologist, Dr. Fekrazad. I’ve been told repeatedly that the optimal time for surgery is six weeks after chemo/radiation treatment ends. Sometimes they will stretch it to eight weeks, but the longer the time between the end of treatment and surgery the more the risk of a recurrence of the cancer.

The original surgery date of November 24th was one day shy of eight weeks after treatment ended. The new surgery date of December 7th is two days short of ten weeks.

Back in August when I first met with Dr. Rajput, I was given to believe he was “the guy” to do my surgery. He’s one of only a very few surgical oncologists in New Mexico. I was told that other surgeons in the area who had experience performing colon surgery were not oncologists and that I’d be better off with Dr. Rajput.

Now, however, I’m seriously questioning whether I want to have my surgery at a place that has failed to build any trust with me, has failed to communicate adequately with me, and has failed to consider my needs as a patient when repeatedly cancelling and rescheduling appointments and procedures. So, today, as much as I loath the idea, I will begin the process of searching for another surgeon. I don’t actually have much hope of successfully finding someone who (a) is qualified to do this surgery, (b) can see me immediately, (c) will be able to schedule surgery in only two or three weeks, and (d) my insurance company will accept. But, that’s the mountain I’m going to begin climbing today.

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