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Archive for January, 2010

If I’m not careful, you guys will start to think all I do these days is go out and enjoy myself. OK, it’s true for most of this past week. I’ve had four very fun things take place:

1. I attended a yoga workshop! My teacher, Linda Spackman, called to invite me to a two-hour workshop she was giving on the Yoga Sutras. She felt it was tailor made for me to ease back into practicing. She was so right! We spent most of the class discussing ten of the sutras about cultivating clarity in the mind, then doing some breath work, some meditation, and about 15 minutes of gentle yoga postures.  Oh, they felt so good! (I was humbled to discover I couldn’t touch my toes or get my heels to the floor in downward-facing dog…but it’ll all come back in time.) Yoga! Such good stuff!

Frank Murphy's lovely book "The Spirit of Tea"

2. I was invited to afternoon tea with Frank Murphy, author of The Spirit of Tea, and photographer Kitty Leaken, who is now working on a book on tea rooms. We met at Reposo at the St. Francis Hotel where we enjoyed beautifully prepared Chinese teas (Kitty and I each had Oolong while Frank chose White tea). As luck would have it, I recently finished reading Frank’s book, so I could at least speak intelligently with him about it! But I was surprised to find him picking my brain about the tea business when he is one of the few folks who have actually completed the training of the American Tea Masters Association. It was quite an honor to meet him. I have Kitty to thank for the introduction to Frank and for including me in such a pleasant afternoon with two generous and artistic souls.

3. I splurged on a handmade reconstructed sweater from Etsy artist Jill2day. I’ve been slowly transitioning my wardrobe away from the fitted tops I’ve usually worn (they make me uncomfortably aware of my colostomy now) to more loose, flowing tops. I saw this gorgeous garment on Jill’s Etsy site and immediately placed it on my “favorites” list. For over a month I kept going back and ogling it. Then I read more about Jill and her work in an article on Etsy’s blog, which enticed me further. And, one day recently, I found there was enough money in my PayPal account – so I bought it!! I must say, it’s much more beautiful in person (and exceptionally well constructed) than the photo shows. Sooo, what do you think of my new look?

My "new" reconstructed artsy sweater

4. I went to a Women’s Workshop with my mom that was held this morning at her church. The topics presented were: self care, balance, and boundaries. All stuff I’ve had no choice but to work on over the past six months! Much of the workshop was a good reminder that when we’re not taking care of ourselves first, we’re not likely to be much good for others. I was glad to be there with my mother (who, in this daughter’s opinion, could stand a little more practice in the way of self care, balance and boundaries…I’m just sayin’…).

So, it’s been a heady week full of several themes I’m pretty passionate about: yoga, tea, creative expression and taking good care of oneself. That leads me to encourage you all to take time to find joy in something you’re passionate about, too. I know this much: it’s good for your well being.

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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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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…

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I know, I know…it’s been a while. But no need to worry excessively – I’m doing okay. Just struggling a bit with motivating myself to write something.

Here’s a slightly overdue recap of recent events:

12/28/09 – I went in for an ultrasound on my right arm to see if the blood clot(s) had resolved. Thankfully, the answer was yes (no clot!). So, I got the “all clear” to have the port removed (although I still have to keep giving myself the Lovenox shot every day for a few more months as a preventative).

Later that day – Off to the cath lab for the port removal procedure. Two nurses told me it would be easy, with no sedation necessary, and nothing to worry about – so, I didn’t. Then, the doctor came in while they were prepping me and gave me a slightly more detailed version of what to expect: the procedure would take about 20 minutes, they’d give me local anesthesia to numb the area, and “most people do fine without sedation, but if you feel anything sharp, let me know…”  (What!?)  They tented my head again, as they had when I got the port installed, so I couldn’t see what they were doing, but I could feel tugging and pulling and hear the sound of clamps being used. At one point I swear it felt like the doctor put his foot on my shoulder and yanked the thing out of me. I’m sure that’s not what really happened, but it felt like it! They sewed me up and I went home. For a procedure that was supposed to be “nothing” I ended up on the couch for the next two days. I was really fatigued and it felt like someone had slugged me hard in that soft area between the shoulder and the collar bone. But I survived (once again), and the dreaded port is gone!

12/30/09 – I had my follow-up appointment with Dr. Brown at four weeks after the surgery. He looked at all the wounds and said they were healing properly and he was happy with my progress. He also commented that when he saw me walk down the hall to the exam room “it didn’t look like you just got off a horse.”  I understood this to be a positive indication of how well I was doing. We discussed the things I’d been concerned about (the stoma bleeding, the wounds still seeping, the bulge on my belly just above the incision…). Everything I brought up was met with his nonchalant “that’s normal.” I’m to see him again at eight weeks after surgery.

1/8/10 – I was having a few problems with the colostomy bag, so I went to see Carla, the ostomy nurse, for a follow-up. She looked at everything and, like Dr. Brown, declared that all was well and normal for this stage of things (being less than six weeks after surgery). I talked to her about the features of the different bags I’d tried so far. There was one bag I liked everything about, except for the wafer (the part that adheres to your skin). I preferred the wafer on another bag, but it didn’t have other features I wanted. Carla looked through her enormous ostomy appliance catalog and found a bag that has the combination of things I wanted, including the “microskin” wafer I liked. I’m waiting for the new bags to arrive any day now so I can see if they’ll make dealing with this a little easier!

Staying warm while at the computer...

Other than that, I just seem to have days when I simply do not feel like doing anything. I think I’ve actually been just a little depressed – which, in Dr. Brown’s and Carla’s words, is “normal” under the circumstances. I’m still adjusting to a having a colostomy (a huge adjustment, I might add). My body is still recovering from the months of being poisoned, burned and cut open. Plus, the chemo and radiation brought on instant menopause, meaning my hormones are whacked on top of everything else. And, it’s been downright cold! So, a tiny bout of depression doesn’t seem out of line, does it?

The good news: It’s a New Year. I’m cancer-free. I’m well enough to get out and walk, drive, go to the grocery or the post office, and generally do many things I once took so much for granted. Only now, I usually remind myself how blessed I am to be able to do these simple chores of daily life. Okay, sometimes I’m sad. Sometimes I’m silly! But, mostly, I’m just grateful for life.

Next time: Ostomy 101 (I’m giving you fair warning about the topic in case you’re squeamish…)

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Hi, Dad…

My father called today to check on me (as he does every few days). He said, “You must not be feeling too good…you haven’t written anything on the blog in a while.”  It’s true – when I’m feeling crummy it’s often harder for me to muster up the gumption to write something. But, here goes:

 

Hi, Dad.

You were right about a couple of things you said: I haven’t been feeling too hot for a few days, and lately you’re not the biggest pain in my ass.

Love you,

-Karen

 

In One Year and Out the Other

On New Year’s Eve each year I like to reread a little book I picked up at the Larkspur Press in Kentucky. It’s a book of American haiku-style poetry called In One Year and Out the Other by Steve Sanfield. Each short poem is about the beginning or the end of a year. Here’s one that I particularly liked on this year’s reading:

Only four days into it / and already / two weeks behind

I’ll see if I can get you guys all caught up here soon…Meanwhile, a Happy New Year to you.

 

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