Monday, January 7, 2008

Pouch pockets, Porsches, and Prayers for my Pal, Please

A little aliteration for the New Year. :)

First, some good news on the ileostomy. I hesitate a little to share this, but it's been a hair less than two weeks and I'm only only my second flange/pouch combo. When I got mad at the third one in two days, I may have struck gold. I really squashed the middle of the flange (the part we have to cut each time) and was determined to make it stick to the seal that we were trying to make sure would stick to my skin. Well, between being mad at it and being stubborn about getting it to stick and being paranoid about making sure it stuck... it stuck. Five days later, I got a little teary eyed again when I realized it was a record. So I did it again and this one is holding well too.

Just after Christmas, Jody and her mom were sewing and my thoughts wandered to a little knickknack I'd seen in the hospital. It was a cover for stoma pouches and I wondered if I couldn't make one. So, I asked for some scrap flannel fabric that Jody had and I proceeded to try to make one that might fit my pouches. I took a brand new one and laid it over two pieces of fabric then traced out an outline that would cover the pouch when I folded it inside, out. I took one piece and flipped it over on the back of the pouch to trace the inside of the flange loop so that it too would fit when folded inside, out. I carefully sewed open the flange hold first then sewed the two halves together. When I pushed the inside, out, it fit over the new pouch just like a nice warm, dry, mitten. I emphasize dry because even though the pouches has a fabric backing, they still make a little sweat against my belly that hadn't been so comfortable. It worked so well, I made another one. They've given me a little more comfort and some confidence to go out here and there.

In Dave's Porsche.

I will try to get some pictures, but yeah, I've had my friend's 911 Turbo S convertible for a few days. Both yesterday and today have been reeeeally nice for putting the top down. Oh yeah. Talk about a morale booster; when your friend dangles the keys to his sports car at you in trade for your commuter, by all means grab them.

In a bit of surprise to myself, I don't think I'd take one for myself. It is very very very well equipped for high speed travel. It would be a hoot and a half on any of the tracks I've been lucky enough to drive so far, but around town it's a workout. Trying to keep the speed down in this monster is genuinely hard to do. I used to get a giggle from that old Sammy Hagar tune, I Can't Drive 55, but in Dave's car I found a new understanding of Mr. Hagar's lament. It does not want to go slow. It doesn't even really want to go with the flow of traffic. It has a pathological, no, a psychotic need to hunt down taillights ahead and turn them into headlights behind. It was fun, but not for tame American roads. It had an unusual affect on road ragers too... I could see them approaching and then they'd quite cautiously slow down to pass me. Weird.

I will enjoy being reunited with my GTI. Dave emailed high praises for the gearbox and fun factors which were big parts of why I bought the car but I will not shortly forget the last few days in his amazing 911.

Which brings me to an abrupt segue. I've mentioned my friend Greg here before and I got word from him that he's staring down a barrel. I've been praying that the best comes to pass and ask right now for your help too.

His oncologist and surgeon are at competing facilities and can't seem to keep their opinions of one another from intruding upon Greg's care. His onc went into panic mode last week and made loud noises about Greg needing to start his chemo right away; like today. He nixed any idea of getting his ileostomy reversed beforehand. This is eighteen weeks (nine rounds) of poison before the onc will okay Greg to get his ileostomy reversed... which his has already been a bigger challenge than mine.

You see, he got sighted for his stoma almost immediately before his surgery and didn't really get a good one. From what Greg has described, his stoma is directly in the middle of a fold in his belly; such a bad sight that he can't really flex his middle without worrying. Getting up or down, sitting, etc; they all put his pouches at risk for coming off or leaking. It sounds like his flanges may be getting skewed like a taco shell if he's not careful. Eighteen more weeks of this would be hell.

The alternative is to get the reversal done first (which may be up to a month or more from now) but have to take 24 weeks (12 rounds) of chemo. I told him that's the plan B I've had to shift to since my j-pouch may take longer to heal than originally thought. My onc has no problem with this extra time though she intended to discuss overlapping the start of chemo with the revseral surgery. To her, there is no complication. I hope Greg's onc will come to this realization too instead of continuing to freak out. An extra six weeks (3 rounds) of chemo sounds like a better deal to me than trying to pary with il-fitting stoma pouches for three more months. Please, pray with me for Greg's team to get it together and find a professional, human solution to his care.

5 comments:

tinkknitz said...

You little closet crafter you!

Anonymous said...

You know those microfiber towels in the auto section? they are SUPER absorbant and easy to sew with. I bet a layer inbetween the flannel would keep you nice and dry.
Jolene

Michele said...

Ok, I can't get past the part where you said YOU SEWED. I thought my hubby was handy around the house, wow, even I can't sew. Whatta guy!
Michele

Anonymous said...

Sco, glad to hear that you are at home and apparently improving every day.

You are an inspiration to everyone, sick or well.

Once I get over this cold I seem to have to developed, I'll contact you to see if you are up to having a little company drop by.

Art

Jana G said...

John - This blog is amazing. I'm sorry I hadn't heard earlier. Your strength will always surprise you. Keep it up - and don't forget to patent that pouch... it could be worth a fortune :-).