Journal

Journal entry by Charles Ellis

Though a definitive diagnosis is still a ways in the future, Kate feels much better after seeing Dr. Taryle of National Jewish Hospital. This nationally renowned hospital specializes in respiratory illness. She felt Taryle talked to her, told her what he thought. She'll have a new pulmonary function test, then a second CT. "To establish one more data point." After that, probably a lung biopsy.

I'll keep you up to date. Otherwise her weight has stayed consistently above 100. Her energy and stamina are much improved. In 13 days it will have been one year since her bleed that took into the E.R. and started this whole difficult year.
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Journal entry by Charles Ellis

Hi, All,

Kate's 75th birthday is on the 18th, Sunday. If you're able, I'd love to see you send her a card. I know many of you won't be able to and that's fine. But. I'd sure like to flood her with cards for this three-quarters of a century. She doesn't feel like going out, so we'll do something here at home. Maybe opening your card?

She's doing well. At or over a 100 pounds most days, cheerful and joking. Stamina continues to improve and she continues to take back parts of our life that she's now able to handle. We're almost 11 months past her bleed now.

Here's our address:

9358 Black Mountain Drive
Conifer, Co.  80433

Thanks for paying attention to her progress over the last few months. It's helped her enormously.

Journal entry by Charles Ellis

Hi,

Forgot that most of you don't know about my cancer. I had prostate cancer diagnosed in 2015, my prostate came out, and all was good. Until it wasn't.

My PSA began to rise early this year. Not supposed to happen with no prostate. Flurry of activity, doctors, imaging studies. Conclusion: my prostate cancer had returned. Good news: no mets visible in either a bone scan or a ct of soft tissues.

I began a 35 session radiation protocol on June 17, the day after Father's Day. I'm done on August 6th, the anniversary of Hiroshima. In addition, on June 18th, I got a shot of Lupron, a testosterone suppressor. Both can have significant side effects, but so far, two weeks in, I feel fine. The Lupron shots will continue for at least six months. If I tolerate it well, perhaps as long as two years. Every 3 months.

The aim is a cure. I'm in favor.

Journal entry by Charles Ellis

I said I'd give a last shoutout when Kate hit a hundred pounds. Today. She was 77 at her nadir. She's excited and so am I.

Her stamina has been improving right along with her weight. She drove my sister back to the airport yesterday because I had my radiation treatment at noon. The day before she drove to Littleton and picked up our Akita, Kepler, from the dog groomer. I'd taken him on my way to Anova Cancer Care. She walked all the way back to the groomers, no Rollator. She doesn't use it at all now.

Not sure what's around this corner but she's sure turned one.

I also promised an update on a lung diagnosis. Sort of a half note here. Kate saw Gupta on Thursday. Her weight gain, stamina improvement, and general spirit impressed him. He said he didn't want to do the lung biopsy right now because it might interfere with her positive momentum. Fair enough. He meant, we think, that any lung disease she has is not serious enough to justify surgery and anesthesia, both required for a lung biopsy. On the other hand, that means there's still that uncertainty. Don't what we'll do with this one yet.

Journal entry by Charles Ellis

Not quite to a 100, 99.4, but I felt a need to update you all. Kate's stamina has improved markedly. On Thursday she went to an afternoon class at Congregation Beth Evergreen, came home, and later went back to a board meeting. Last night we attended the Gospel Shabbat which involved standing, foot stomping, and clapping. We stayed into the oneg, the after service food and conversation.

Kate's a different person that she was even a month ago. The TPN and now the j-tube are mostly to thank for that. The j-tube is giving her some fits right now as she adjusts to using it at night (the tubing connections are not as secure as they need to be), but we'll figure it out.

Journal entry by Charles Ellis

Kate's pic line got pulled out just before she left Littleton Adventist. No more tpn.

We took home several small bottles of Jevity, a liquid nutrition source which will replace the tpn bags. This is a ten-hour feeding regimen, one she can do all or almost all while sleeping and reading. Also, she manages this one herself.

This is, for now, the end. When she hits a 100 pounds, I'll send up a flare. When the lung disease comes back on the table, likewise. But, for now, as in the newspaper biz:

                                                          -30-

Journal entry by Charles Ellis

Kate had her j-tube put in today. The operation was a success and she had no respiratory problems at all. When I left, she was alert and happy to have gotten this far.

She'll stay there at Adventist overnight to make sure no problems crop up, but I don't think they will. She'll have a contrast procedure of some sort to be sure the feeding tube works. Feels like we've reached the end of one part of this journey, the one focused on weight loss.

Next will be her lung diagnosis, but she has to be finished with her recovery.

Journal entry by Charles Ellis

The TPN has been wonderful. Kate's up to 97.4 pounds now! A full twenty pounds more than her nadir. But the TPN is fussy and potentially dangerous. Infection. It also adds another set of tubing for Kate to schlep. She needs nutritional assistance that she can use for the foreseeable future-the j-tube.

Those of you who have followed this medical narrative for a while know that it has several plot threads. The bleed. The stent. The second bleed. Pneumothorax. Weight loss and Sjogren's combined. TPN. Potential lung disease. The question of Kate's fitness for surgery.

The j-tube entered the narrative some time ago. Today Dr. Smith, the surgeon, gave Kate a date for the j-tube: June 3rd. We're both excited.

Once the j-tube is in place the remaining challenge so far unaddressed is lung disease. Once she's healthy post-op, she'll get a definitive diagnosis from Gupta and some treatment, probably from her rheumatologist, Dr. Westermann.

This feels like genuine progress to both of us.

Journal entry by Charles Ellis

On Thursday night, Sept. 27th, Kate began bleeding. She wasn't worried too much and decided to wait until morning. In the morning, around 6 am, the bleeding continued. "Take me to the emergency room." We both agreed on Swedish in Englewood.
They stabilized her. The bleeding didn't stop and her hemoglobin was low so she went to a hospital room. (8123, where she still is.)
After several tests including a colonoscopy and nuclear imaging, an embolization of the bleeding was attempted, but failed. Since her blood loss continued, 8 transfusions by that time, Kate and her docs agreed that bowel resection was necessary. That happened on Sunday afternoon.
Imaging of bleeds in the bowels is more art than science, so the surgeon removed what he hoped was the right segment.
Yesterday (Monday, Oct. 1) she was in pain from the surgery, no pain before, and really confused. Her hemoglobin was better.
However, it dropped some later in the day and continues a bit lower than we want. Both the hemoglobin has to stabilize at a safe level for her and her bowels need to restart before she can leave the hospital, maybe as much as a week to ten days. 
I'll see her again this afternoon and post an update then. I'm sure visitors would be good for her, though she may be asleep, of course.
Kate’s Story

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