Feeds:
Posts
Comments

Posts Tagged ‘colostomy’

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.

Advertisements

Read Full Post »

Wow, this has been a hard one to write! I’ve started it several times and – well, I guess maybe I kinda wanted to chicken out.  But, I think I’ve finally got the courage to finish it, so here ya go!

For those of you who continue to be curious about the whole “colostomy” thing (FAQ’s include: “what does it look like?” and “is it painful?”), here’s my crash course in all things ostomy – at least all the things I’ve learned in the last seven weeks of living with one.

“What does it feel like?” – All I can say is you can’t possibly understand what a banana tastes like until you’ve eaten a banana – meaning I can describe this to you, but you can’t really know what a colostomy is like unless you experience it yourself. Now that I’ve mostly recovered from the surgery, things aren’t painful exactly (although I sometimes feel cramping or tightening in my abdomen when there’s about to be some “activity” like a bowel movement or gas). The stoma itself has no nerve endings, so I’m not really feeling much of anything there, but I do have sensations when my digestive system is active. Otherwise, most of what I can feel is that there’s always this bag attached to my skin. (More on that in a moment.)

“What does it look like?” – I have to wear an ostomy bag all of the time, so usually you can’t see anything except the bag. But when I have to change the bag, which is about every four or five days, I need to clean the stoma. That’s when it looks like this: 

My stoma and incision scar from surgery

That red “bud” is the stoma. It’s actually the end of my large intestine which has been re-routed and brought to the surface of the abdomen where it’s been turned inside out to form the “bud” you see. So, what you’re looking at there is the inside of my colon. (That weird dip in the belly is the top of the surgery incision which runs all the way down toward my pubic bone. I’m told the dip is not likely to flatten out, no matter how many crunches I do…but I can try!)

All the health care folks who’ve seen me say I have a “text book” stoma – it’s nicely “budded” (that’s the actual term) and uniformly round. It makes fitting the wafer (the part of the bag that adheres to my skin) easier because it’s a perfect circle and not some odd shape. And since my stoma protrudes properly (it’s not sunken in), I can get a good seal with the wafer. Thankfully I don’t have any folds or creases in my belly (yet!), so I don’t need extra rings and other sticky stuff to fill in any gaps between the wafer and my skin.

The bag itself looks like this before I cut the opening for the stoma in it:

A typical ostomy bag

The round part is what’s called the wafer. You peel off a cover to expose the adhesive and it sticks to your skin like a big bandage. The printed circles are a guide to use for cutting the right size opening for the stoma. From the time of the surgery until now, my stoma has shrunk a little (as expected). It should settle into its final size by about eight weeks. After that, I can order the bags to be “pre-cut” with an opening that’s the right size for me. Meanwhile, I’ve needed to cut the hole myself in order to get the proper fit each time.

The end of the bag has a Velcro-like closure. When I need to empty the bag, I sit on the toilet (like everyone else) and let the bag hang down between my legs into the bowl. I open the bottom and let the contents empty into the toilet. (There are more details to this part, but I can’t bring myself to describe them publicly – yet.)

Here are all the supplies I need each time I change the bag:

Supplies for changing the ostomy bag

I know, that’s a lot of stuff! The critical part is getting a good seal (leakage is soooo not acceptable!), so I prep my skin with things like:

  • adhesive remover (to remove any adhesive remaining from the previous bag)
  • stoma powder (to heal my skin if it’s gotten red or raw around the stoma)
  • a skin barrier (something like a clear moisturizer that creates a layer between me and the adhesive)

Of course, there’s the need to keep everything sanitary during the process – hence the wipes. The used ostomy bag goes in a zip-lock baggie (double-bagged!) and gets thrown in the garbage. The whole process takes me about ten minutes.

Once the new bag is on, here’s what it looks like:

Me and my bag...(what? no matching shoes?)

I just tuck it into my pants like so:

Now you see it, now you don't

And, voilà! Off I go…until next time!

So, writing this made me feel a little bit like one of those new moms who can talk about nothing other than their baby’s poop while at a dinner party! I did think it might be educational and informative though – kind of dispelling the secrecy around colostomies. I hope it wasn’t too awful…

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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!

Read Full Post »

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…).

Read Full Post »