Tami's Journey

 The Decision to Transition to Hospice Care I apologize for the length and weight of this post. It is by far the hardest thing I have ever written.  I fear that this pales in comparison to the next post I expect to write.  Some decisions are choices and others are simply reactions. As my last post indicated, we spent a few days in the hospital the 11th thru the 13th due to bleeding related to her largest tumor. Well, Tami had a standard pre-chemo blood draw on Thursday the 16th. That morning, along with the continued bleeding, Tami noticed abdominal swelling (to put it mildly), redness, and tenderness. At the urging of her Oncologist, we went back to ER after her blood draw.   By the time we were seen, Tami was in sepsis, and severely dehydrated. So, they started an IV with fluids and antibiotics. They also did a CT Scan. The CT Scan showed that the primary tumor ruptured, and that the cancer spread so much that there are too many blockages to be operable. ...

Andy - I think we have a problem Nothing good starts with the words, Andy... I think we have a problem . But after Tami's Saturday afternoon nap, that was the wake up call. The problem in this case was unexpected bleeding. So, we contacted the Kaiser clinical advice line, who, after looking at Tami's medical record, advised us to go to ER. So, off to ER we went. They wanted to keep Tami overnight for observation. After 5 hours of being there, there was no further bleeding.  So, Tami opted to go home, with the agreement that, if it happened again, we would come back. So, we signed the discharge "Against Medical Advice" (AMA) forms and went home.   Sunday morning confirmation   It didn't take long to realize the bleeding was not a one time occurence.  The next morning the evidence was back. So, again, off to ER we went. This time, Tami allowed the admission for observation to occur.  They performed a procedure to try to determine the cause of the bleedi...

"You Look More Relaxed" As most of you know, I call square dances for a few wonderful weekly clubs. One of the dancers (okay square dance royalty) in my Sunday Night club, Jim Maczko, made the comment that I seemed more relaxed lately. I guess my attempts at hiding the stress were not working very well.  I apologize, as I try hard not to burden dancers with my reactions to what is going on with Tami. The calling has been my therapy throughout this journey, and the dancers have been agents of comfrort for me. They deserve better than to bare the burden of my concern.  But... back to Jim's comment.  He is right. I am more realxed. As I stated in an earlier blog post, the most recent trip to ER was preceded by me finding her on the couch somewhat unresponsive. What I did not express in the previous post was just how traumatic it was to look into Tami's vacant eyes and have to shake her awake. That was followed by in inpatient stay where the first several days of her sta...

First Things First — The General Update on Tami First of all, a quick apology for not writing for a while. I have been spending time actually carng for Tami, rather than writing about her. The bottom line is that Tami is home, settling in, and getting physically and mentally stronger each day. After spending far too long immobile in a hospital bed, it has taken time for her to regain the ability to stand and walk. Now, with some stability assistance (me, a walker, walls, counters, tables, sinks, etc.), she can do both with a growing sense of confidence. As of today, she was even able—though with considerable effort—to stand up from a seated position on her own. She’s doing well enough that her oncologist has put her back on the schedule for a drastically reduced round of chemotherapy. He agreed that the first level of chemo was far too damaging and has given a lot of thought to adjusting the components to balance clinical benefit with quality of life. On July 10 , we’ll begin chemo ag...

Quick Recap I brought Tami into the ER at 5 a.m. on May 29. She hadn’t been able to keep anything down for weeks, and by then she was weak, dehydrated, confused, and barely functioning. In the nearly two weeks she’s been here, her care team has rehydrated her, figured out why she couldn’t eat, given her nutrients through an IV, and knocked out the infection that was dragging her down. They even got her out of bed for a few steps. Now, at long last, it’s finally time to go home. Setting up for Success at Home For about a week before our trip to the ER, Tami kept saying she really wanted a hospital bed. She was struggling to sit herself up, and getting into a position where she could safely stand was even harder. While she was in the hospital, I went ahead and bought one and had it delivered. It’s a step down from the incredible model she’s been using at Kaiser, but it’s the same manufacturer (Hill-Rom) with most of the same functions and controls, so it should feel familiar and easy fo...

It’s a Small World Most readers of this blog know that I’m a square dance caller. Recently, a brother and sister pair of high‑school‑aged dancers, encouraged by their grandfather, Don, joined my Sunday night class. Their mother, Catherine, has occasionally come to watch. I’ve had the chance to chat with her, and she mentioned that she works as an ICU nurse at Kaiser Zion. Tami's new, temporary, home. One night, Don took Catherine and her daughter out to dinner to celebrate the daughter’s high‑school graduation. During the conversation, he shared what was going on with Tami and pointed her to this blog. The very next day, Catherine was assigned as a “float” nurse—meaning she could be placed anywhere—and by pure luck, she ended up on Tami’s unit. Even more astonishing, she was assigned to Tami. When she introduced herself, she asked Tami if she was married and her husband's name. When Tami said Andy, Catherine asked whether her husband was a caller. Tami rolled her eyes, and sai...

Clinical Update A quick recap: as we shared in the last post, the reason Tami couldn’t keep anything down was an intestinal obstruction. In lay terms, the bloating, pressure, and distention created enough force to pinch off the small intestine, preventing food from moving through. With no real path forward, anything she swallowed simply came back up. To relieve that pressure, the care team inserted a nasogastric (NG) tube—a thin plastic tube placed through the nose and down into the stomach. Its job is to continuously remove the excess contents that are keeping everything backed up. Until the obstruction clears, the doctor’s orders are that nothing is to be swallowed. Tami gets Nutirients Since she hasn’t effectively eaten in weeks—and still can’t safely eat—she’s now receiving IV nutrition. The formal name is Total Parenteral Nutrition (TPN), a sterile, customized mixture of proteins, fats, sugars, vitamins, and minerals delivered directly into the bloodstream when the digestive syste...