Thursday, March 31, 2011

Crisis resolved (I think ...)

Just got back to my hotel room. Managed to find a woman who worked in medical supplies at a local hospital who was willing to jump through some hoops for me and set me up. Kinda ... she gave me a box of urostomy supplies. (In general, a urostomy is given to those who need a new way for urine to exit their bodies (because their bladders have been removed for whatever reason, etc.)). These urostomy bags aren't exactly made for collecting solid waste, but with a pair of scissors and some guidance from my ostomy nurses back at Providence Portland (Natalie, Hillarie - you two are the best), I think I'm got something that'll get me through my two days in Los Angeles.

Everything's back to normal now (whatever "normal" is ...)

Off to the conference!


In a bind ...

I'm in Los Angeles for a conference. Unfortunately, my colostomy supplies didn't make it down with me. I have no idea how that happened. Airport security went through my bag because I had a wine opener left over from another trip in it, and I wonder if I missed them not putting my supply bag back into my carry-on.

Scrambling to find a hospital nearby that carries supplies. I'm learning that not all hospitals and clinics carry them. If I come up empty, I'll be missing my conference and ordering room service for two days until my flight home tomorrow night, which could be a smelly one, folks.

Stay tuned ...

Wednesday, March 9, 2011


Been busy the past few weeks, and have started this blog entry three times, so it's a long one, and covers a few weeks of stuff. Enjoy!


So I met with my primary physician a few weeks ago . He's the doc who started off last year's journey o' fun by finding the tumor in my arse during last year's physical, my first physical after turning 40, the first year that doctors are supposed to start checking for prostate problems. Well, it was 14 months since then and it was time for another check-up.

I like my primary physician. I think he's a good guy. I just wish he had found this tumor a year earlier, when I was 39. As I mentioned a while back, I knew he and I talked about my butt and symptoms that I was concerned about (rectal bleeding) the year before. Looking at the records, he only did a perineal exam (that is, he only spread the butt checks, took a look see, saw that nothing was there, and told me to carry on). I was pretty upset at him for awhile last year, but I've calmed down quite a bit. I can chastise him all I want, but that won't change anything.

Anyways, the physical went fine. He gave me some immunizations, referred me to a dermatologist for some skin stuff, and ordered some blood tests to check cholesterol and triglyceides - the usual stuff. (Got all the results - my blood numbers are actually better than they have been in years. Quite pleased with that.) Having gone through all that damned cancer treatment, and now considering myself a fairly sophisticated consumer of medical services, I didn't find him particularly prepared for the physical. Granted, my file is full of paperwork generated by the onslaught of exams and lab test I went through last year, and I really don't expect him to read every page in file (being an attorney, I'll admit that I rarely read every page in a file for a matter I'm working on, but then again, I only read what I have to in order to handle the case).

But, it was clear he skimped on the preparation side. First, he asked me if I had an ileostomy. No ... that would mean my sphincter would still be there and that we were waiting for things to heal up before reversing the ileostomy. I have a colostomy (that's in the file) and my surgeon would have reversed any ileostomy 4-5 months after surgery, which was in June (also in the file). Second, he put the gloves on to check my behind, apparently to see how my prostate was doing. *Sigh*. Really? It's all sewn up back there doc. I didn't say anything. I wanted to see how far he was going to get before realizing his mistake. Before he got too far, he asked me if they closed things up back there, and I said, "Yup." He then took the gloves off and chucked 'em. Yep, that was all in the file.

So, there you go. Doctors are people too. Sometimes they're just not on their game at work.

He said that moving forward, checking my prostate would be difficult without access to it (good point), and that the only way we can monitor prostate cancer will be checking PSA levels (a blood marker). The five CT scans that are part of my cancer follow-up will cover the prostate, which is nice, so we'll have visual data to look at to see if there's anything going on there, but after that, it'll just be the PSA test.

Anyways, after the physical ended, I couldn't help but think again that the person who is going to look out the most for me, is ME. By the time I got down to the pharmacy to pick up my new epi pens (shellfish/bee sting allergies), I'm sure my physician was already meeting with his next patient. He doesn't have the time to scour over my records, to mull over how I'm doing in between my visits. He has a slew of patients. I get 30-45 minutes of his time once a year during my physical, and that's it. I'M the one who decides what I put into my body, I'M the one who decides how much exercise I get, I'M the one who gauges how I'm feeling, and I'M the one who decides when and what type of medical attention I'm going to seek.

Oh, so I did talk to him about how I wished we had caught this a year earlier when I talked about my butt symptoms. He was definitely surprised (concerned, perhaps? - can you say "medmal"), and immediately went to the computer. His records showed that he did the perineal exam, but that that was it. I asked how we get doctors to start doing internal checks earlier, and he said that he now does internal butt checks starting at age 35, because of what he found with me at age 40. That's great for the patients who came after me, but it doesn't help me. Sure, it makes me feel good that maybe by screening people a little bit earlier, at least one other person is spared from going through what I went through, but it doesn't make MY stoma go away.


Saw my surgeon recently too. My CEA levels (a blood market that can indicate that tumors may be growing somewhere) dropped since my last blood test three months ago and is well within the normal range (0.7). That's good news. So with no signs of cancer in my Janurary CT scan and this Februrary blood test, I'm feeling pretty good. These two test check for against cancer and they've come up negative. I have my one year colonoscopy in May, which would pick up any polyps that could turn into cancer down the road, so that's preventive screening. And, if that all goes well, then I'll feel real good about my future prospects.


Physically, there's not a whole lot holding me back. Been cycling and running and signed up for a few long-distance bike rides this summer. I do still feel weak and fatigued at times, though. It's not anywhere near as bad as my chemo and post-surgery fatigue, but it does feel a bit like the chemo fatigue. I plain just get tired all over, and usually wind up falling asleep. Not sure what that is all about. Maybe I just don't have my strength reserves built back up yet.

The neuropathy in my fingers has notably reduced, but it's still pretty noticeable in my feet. It's the worst in the morning. It's like I'm wearing numbness slippers - the bottom of my feet are numb every morning.


Attended my colorectal cancer group this month. (Missed February because I was in Hawaii.) That group keeps on proving it's worth to me. It keeps me centered. Even though I'm "through" things, I plan to keep on going when I can.


Oh, I attended an information session about volunteering to be a "Chemo Pal" for the Children's Cancer Association here in Portland. Chemo Pals visit kids going through, you guessed it, chemo. You don't *have* to be caner vet to be a volunteer, but I think it might help a kid to know there's a shared experience there. A few administrative and procedural hurdles have to be cleared before I get paired with a kid, but I'm looking forward to participating in this. I've always wanted to volunteer throughout my adult life, but really, I've never done much. Just one of those things that's always on your life but that you never get too. Cancer causes one to reprioritize things, and volunteering got bumped up to the top. No more excuses. I'm making time for it now.


That's it for now ...

Keep on keepin' on, folks!