Jackson, Day 2.
Visited today with Susan and Travis. Dad seems much stronger and is starting to look a little more like himself.
Saturday, July 30, 2011
Jackson, Day 2.
The three of us had time to meet briefly before the appointment and Mom went over her list of questions so nothing would be left out.
Dr. K was direct. He started with a description. It is a complex shape, 'multilobulated' is the secret word of the day. Two overlapping lobes starting from a common growth measuring roughly an inch and a quarter square in the upper left lobe of the lung draped around an airway making surgery impossible without removing too much lung. They did not get quite enough tissue with the biopsy to do genetic diagnosis, but he didn't think that would be an issue at this time. Dr. K said he did discuss cryo-treatment (freezing the tumor) with his colleagues, but they felt that there was not enough data to validate the efficacy of the treament at this time.
The ideal procedure would be to surgically cut the tumor out, but since that isn't an option, we need to look at some form of radiation. He recommends CyberKnife or stereotactical radiation and has referred us to Dr. Robert Timmerman, a Professor of Radiation Oncology at Southwestern Medical. Stereotactical Radiosurgery is a non-invasive means of precisely delivering a high level of lethal radiation directly on the mass with minimal effect on surrounding tissue. It would be done in two or three treatments and would involve no chemotherapy. Conventional external-beam radiation would involve daily treatments over a number of weeks with accompanying chemotherapy to enhance the effects of the radiation. Mom's PET scan showed low function in her left kidney (it was very slow to pass the dye) and her relatively high creatinine level indicating clearance issues also makes chemo a bad alternative, since the inability of her kidneys to clear the toxins would magnify the side effects. It seemed clear to us that the Radiosurgery is the way to go.
According to Dr. K, the main side effect is fatigue. There's not much discussion of side effects on the Cyberknife site. I suspect they are being undersold, especially for someone in Mom's fragile state. We should address side effects with Dr. Timmerman at the first appointment.
Dr. T is on the forefront on this technology and has been instrumental on developing the protocol. Here is a link to a PowerPoint presentation he uses to show the advantages of this treatment. It gets a little technical, but pretend you're a hospital administrator.... Advances in Image Guided Hypofractionated Radiation Therapy. (Hypofractionated means the treatment is broken into several sessions.)
For a look at how it works, here is a presentation (with a video) by Cyberknife: How Does CyberKnife Treat Lung Cancer? Keep in mind that CyberKnife is a trademarked name for a brand of stereotactical radiation equipment.
One point Dr. K emphasized is that radiation typically is not a cure. Frequently there are some cells which are resistant to radiation, or survive or mutate and grow back. But the time gained with high quality of life is significant.
Mom did ask Dr. K very directly, "What'll get me first, the emphysema or the lung cancer?"
Dr. K was taken aback and chuckled.
"Pneumonia or heart failure are the usual causes related to emphysema," he said.
After a pause, while he considered the proper euphemism, he finally grinned, "If I had to say, I guess the emphysema'll get ya first!"
Following her treatments, evaluation will be done with periodic imaging which will be monitored by Dr. K. The first appointment for follow up is Thursday, Sept 29 at 10:20am.
Mom has her first evaluative appointment with Dr. Timmerman next Thursday, Aug 4. We'll know more about her schedule then.
Friday, July 29, 2011
He was tired after innumerable visits with hospital personnel, a few phone calls, in-room exercise, a walking lap around the wing and a shower! Definitely ready for a morning nap.
Dr. Platt came by briefly, clapped Dad on the shoulder and said, "You're doing great! See you in a couple of weeks." He gets straight to the point. As Dad says, "A man of few words." But good news!
Dad called a couple of hours later. He was all packed up and they were moving him to rehab in the Jackson Building. 3rd Floor, room 457.
Came back by. Dad had finished breakfast. Voice much stronger and blood pressies up. Great news!
Off to the Professional Building on foot!
Came by before Mom's oncology appointment and Dad's sound asleep. Can't think of a better thing for him to be doing.
Thursday, July 28, 2011
Now his work is just to get stronger. He's still much weaker than pre-op. That's largely up to his own determination and perseverance.
Helen, Will and Scott showed up to say hello as we were leaving.
And so attention turns to Mom.....
The "hospitalists" - from central casting as Dad describes them - came by. Heart rhythms were still sounding great. We watched GMA for a while and discussed the sorry state of TV journalism. One of his therapists showed up and I left to go to work.
Dad and mom had a meeting with the head of the rehab department yesterday. Friday is the big day, they'll decide which facility and possibly move him as well. So Friday could well be a confusing day.
The good news is that heart seems to have stabilized, now it's just down to the hard work of rehab.
The TV was on (a first) and Dad was sound asleep on his bed. I watched him sleep for a few minutes and left. Inability to sleep was at the top of his complaint list earlier, so it was good to see him getting some rest. Another victory for Xanax!
Talked to Mom and evidently he spent a good bit of the afternoon in serious nap-time. Even talking in his sleep, apologizing for not picking up some prescriptions. Evidently they did NOT change out his bed, but between his re-hab exercising and the Xanax, it didn't keep him from sleeping.
Mom talked to Kirkpatrick during the day, but I'm sorry to say I don't remember the details. Appointment is still on for Friday.
Wednesday, July 27, 2011
Arrived a little after 8. The girl from CVC was there checking in. Dad had just finished breakfast and pronounced it the best hospital meal he'd had. He seemed chipper and though he complained some about lack of breath, it was not evident.
The nurse came in. Confirmed that his last official 'fibrillation' episode had been Tuesday afternoon, around 2 pm. Dad had had a couple of panicky episodes overnight where he felt he was out of breath, but the heart rhythms were not the culprit.
Main problem is that he's having trouble sleeping. When the nurse asked the problem, he said, "The damned bed!" Her response was that there were some older beds around and she would try to get it changed!
The other issue is general anxiety. He feels that he is still out of breath and mentions frequently that that was the root problem. He seems frustrated to have undergone all the surgery and still have the original problem.
Dr. Chloe came in. Said his rhythm sounded great, glad to see that the drug interevention seemed to be taking hold. I think it was Dr. Chloe who suggested that he take Xanax to help control the anxiety.
The 'hospitalists' came by. I forget their names. It's Tanya (Vanya?)'s last day. Clarissa (?, the blond one) will be on another detail after Saturday, but Dad should be gone before then.
Dr. Platt came and said the same things. Through it all, the amiodarone WAS doubled, not to 800 but to 1200. He is going to take it down to 800 and said it would be better to be lower than that before discharge. Wound is healing well. We discussed life after Hamon. Dad expressed desire for a few days in Jackson. Reminded him of Mom's condition and inability to provide critical care. He said he would work on it today.
Physical therapist came by. Dad walked to the family area at the end of hall and then went past his room before returning. She gave him some leg exercises he can do at any time while sitting. The occupational therapist was due later for upper body and arm work.
If anyone wants info over the phone from the nursing station, the code word is deedon. Immediate family only.
Here's where someone who was there needs to fill in the blank. I'll try to fill in the story as Mom told it to me last night at 9:30, but I don't have time right now.
Off to the hospital for a quick visit this morning. It's going to be a busy day at the store, I plan to go for a visit after I get off (around 7)
Looking ahead, Mom has a big appointment with the oncologist Friday morning. Helen and I both plan to be there.
I thought I'd start this so we can have a common place to store thoughts, observations, and to record hospital visits, doctor visits so those interested can keep up to date. In addition to myself, I see Mary and Helen (and even Mom and Dad, but I doubt that!) as main contributors.
So let's give it a try!