Take the good with the bad

K has been having such awful side effects (frequent nausea, vomiting, edema, etc. - generally feeling like she's dying) from the Gleevec, that she decided to stop it a few weeks ago. She said she would rather have the CML run its course (and kill her in 2-3 years), than try to live with those symptoms, along with all the others. I'm not sure if she'll be sticking to that philosophy, or if she'll be willing to try something else. Her Oncologist said he would ask Kaiser if they're willing to let him try some alternatives, both of which have seen good results in the short term, but don't have any long term data yet. In the meantime, she's starting to feel better instead of worse, and regaining some control. And her foot wounds are healing.

Bad week

K's had a hard time with nausea this week too. She skipped dialysis today, didn't feel it would be practical to be stuck in the chair with everything else going on. They found her a spot tomorrow morning. I'll be supporting the countdown, so our neighbors will take her and pick her up.

Something new

We saw Endocrinology today, and they put K on a Dexcom continuous BG sensor for a week. See: https://www.dexcom.com/

Then off to Oncology who said her WBC count is normal. It's a good first step. Look up hematologic (versus cytogenetic) remission. Basically the first thing you look for, is the WBC to be back to normal. After a few months of that, then you resample the bone marrow to see if the cancer cell population is reduced or hopefully eliminated.

A good day

Today turned out to be an amazingly good BG day. A whole bunch of readings in a row, all in the good range. Small victory.

Lows

We're doing something wrong, not sure how to fix it. K's been having a series of low morning blood glucose readings, and they really wipe her out. We try to never let her BG get below 90, but the past week we've seen 55, 41, 38, and now 48 this morning. The rest of the day usually consists of wild swings into the frighteningly high range, sometimes pinning the meter at its highest possible reading of 600. This lack of BG control is very disheartening.

Up and down

K was feeling much better yesterday. But today's a new day. She's struggling back from a low (37) BG now, while still hoping to make it out today, to order new glasses for 2011. Not likely.

Ugh cramps

K had a miserable day yesterday, all muscles cramping badly all day and night. She started worrying about her heart, with all the other muscles cramping so badly. She said it's somewhat better today. Suspecting dehydration.

Busy day

Busy day. K had three appointments. She told the oncologist she's having a pretty good week. The endocrinology lady told her to listen to her husband. ;-) The orthotics guy worked on her CROW boots so they will help instead of hurt her feet. Then we took M&B to the Hollywood theater to watch True Grit, while having dinner up in their elegant Skybox seating.

Day lost

Boo. I just lost a day to something particularly nasty, probably a Flu. I'd forgotten just how awful that feels.

Healing

Good visit at the Ortho Dept. yesterday. K's toe surgery is healing well. She has wounds on her other foot that need to be watched.

Mikele and Bob have been here for a week now. They've been fighting colds, so we've been taking things slowly. Bob and I got out for a short walk today along the Platte river, followed by a late lunch at Panera Bread. Mandy liked the new enclosed patio there. Then we checked out Verizon's new Galaxy Tab, pretty cool. The new Apple MacBook Air is also pretty awesome. Hmmm...

Home at Last

All dressed and ready to go HOME! D'ya like the outfit I picked out for her? :-) 'cept the shoes and socks, which were courtesy of St Joseph Hospital. It took them awhile to process her out of the hospital. Not entirely unexpected. We stopped by Abe's Cafe in downtown Littleton on the way home, so I could pick up some of their tasty chicken lemon soup for her, in case she gets hungry later.

Bringing her home

I'm heading home now, then to hospital to get her.

New room

Kristan's definitely staying in hospital tonight. Probably most of tomorrow. And they moved her to 474. She seems pretty chipper, the foot seems to be healing and the swelling is going down. They're keeping her to try to get her glucose level down, which will help with the healing.

Out of surgery

She's out of surgery and into recovery. Doc said it went well.

Into surgery

K is heading into surgery. She's in pre-op now. Her toe is a mess, they're taking it in a few minutes. We didn't get much notice.

Extra dialysis

They took her off to an extra Dialysis. I headed home to try to get some sleep.

Not Osteomyelitis

No sign of osteomyelitis in her toe or leg. This is great news. I think.

Got the Fistulagram

She had a fistulagram appointment today, but they came to the hospital to do it instead. Nice of them.

Not a clot

Sonogram eliminated a clot as a suspect. Sounds like they'll continue IV antibiotics and schedule a consult with Ortho in the morning.

Not MRSA

Two specialists saw her, and they don't think it's one of those scary fast moving deep tissue infections. I'm guessing the toe wound she's had for awhile now, is heading south. She's on IV antibiotics now, two of em. I'm heading out to nap in the car for awhile.

Dec ER Visit

I brought Kristan to St Joseph ER after dialysis tonight, because her left leg is swollen and red, and the doc thought it might be a life threatening leg clot. The ER doc says it looks more like a foot infection. The leg is hot. They'll do an ultrasound to find out more.

Bittersweet news

Amazing. Now that K's been officially told she needs to be cancer-free for 5 years, before she can get back on the transplant list, in the past week, two kind souls have each offered up a kidney. So as wonderful as these offers are, they're just a bit too late to be of any near-term help.

Back on Chemo

K went in for a fistulagram, a small outpatient surgery, on the 4th. Her fistula had a narrow section, which they widened. She had strong bad reactions to the Gleevec during September, and her WBC dropped precipitously low. So her Oncologist took her off it for October. She seemed to have less symptoms, especially the nausea, as the Gleevec left her system. On Friday the doc reported her WBC is back up to the top of the "normal" range. He's put her back on Gleevec, but with a 25% reduced dose.

Bad Day

Thanks for checking the blog, and so sorry for not updating it lately. Lots of useless excuses. The main one is that I've been posting most of my news on Facebook this year. I keep trying and failing to remember to put some of it on this blog. Please make the effort to find me on Facebook. I'd love to stay in touch with you there.

Not such great news. Kristan was wound free for several months, but now has two foot wounds, apparently not too serious yet. She was diagnosed with CML (a form of bone cancer) on July 30, but they say they found it early and so it is very treatable. Still, this definitely takes her off the kidney/pancreas transplant list. The dentist told her today that the wound on the back of her tongue may be cancerous. I learned today that our company is dropping Kaiser Permanente from their options for health plans in 2012.

My Sister's been visiting the past Month, and keeping me busy with fun stuff after work. When Bob was here, we went biking three wonderful times, did lots of walks, and went hiking in Rocky Mountain National Park. Now that Bob's gone, Mikele's focusing on helping us out by going through our many storage boxes, and consolidating stuff. She's making huge progress. She also keeps me company, on my walks after work. We are so lucky to have her helping out.

Home at Last

Home at last! Now if I can only convince K to go to sleep...

Doing Better

I was walking into St Jo this afternoon, and (perfect timing) ran into them wheeling Kristan up from dialysis. She seems to be doing much better, but not really back to her usual baseline ( whatever that is :-/ ). They're planning on discharging her this afternoon, which past experience tells us probably means late evening. Mandy's waiting patiently out in the car for us.

St Jo Overnight

The CAT scan came back normal. So they decided to admit her overnight, and see how it goes. They also saw the high white blood cell count that KP has been reporting. They were thinking of doing a spinal tap, if she doesn't get better by the morning. I left around 2:30, after she was settled into room 467. By then, she was a little more lucid, but still very weak.

CAT Scan

No luck at the local KP. Nothing obvious in the lab tests. Now we're off to St Joseph hospital ER for a cat scan. Heh. Wish I were joking. Lab test. Cat scan.

Shaky and Confused

We're hanging out at KP urgent care this evening. K had a scary low blood sugar late this morning, and doesn't seem to be recovering all that well, still shaky and confused after too many hours. We asked them to check her over, and see if they can figure out what's going on.

Tests done

K says she's finished all the tests requested by Univ of Chicago. Last one was a Cardio stress test, which went well. So the recent high WBC count, and ongoing bouts of nausea, are the only sour notes I'm aware of.