Saturday, October 1, 2011
Dad answered. Sounded pathetic. Evidently he still feels nauseated and terrible after taking his morning meds. Musselman took him off the Amiodarone Wednesday (that was his arrhythmia medication and the suspected cause of his 'morning sickness.') Hasn't helped yet. It's a major cause of anger and depression. Sunday he was proclaiming with an angry edge to his voice that I'm not used to hearing that "If he doesn't take me off that damned drug I'll probably just stop taking it on my own!" Strong words from the D-Don man.
Other than that, he's doing fine. Aggressively doing his rehab work, walking and getting around with more strength.
Mom finally started taking her neuropathy medicine. I think it's starting to help. She saw the oncologist Kirkpatrick this week. I would like to have gone, but it was a hell day at the store and there was no way I could get off in the afternoon. I don't think there was much for him to say. He would like to do a scan and check on the tumor's progress (or lack of it), but Timmerman's group has scheduled it for a little later and he's going to respect their scheduling. Mom would have definitely liked him to do a scan as well. She's anxious to hear that the tumor is shrinking. Or dying. Or whatever is does once it's been zapped! She sounds stronger!
Will see them at some point this weekend. That's all for now!
Tuesday, September 20, 2011
And it is.
Stability has been achieved. In Dad's words, "Everybody's been telling me that recovery is going to be a long, slow process, and I've finally learned to accept that."
The good news is that I think he sees recovery as going to work. So he's doing his walks up and down the corridors in the building, going where Mom has never gone before! And she went on his walk the other day.
I called on the phone Sunday. Dad answered and I asked how he was doing.
"Well, I guess I'm doing OK...." he answered.
I was taken aback. I think it was the first time he didn't respond with a negative statement about his condition and I think that's huge. Susan and I went by and picked them up and we went out for lunch. Sevy's was not open so we tried Crossroads Diner, which is owned/run by Tom and Karen Fleming. Tom is a chef who has been active in the local food community and worked with Mom and Dad on some of their AWIF projects. They were delighted to see Dad and it was great for him to see them. Tom sat down and visited for a while which was great. It was Dad's second meal out of the apartment since going home and his first 'social' engagement.
Mom had an appointment with Dr. Hardee yesterday and left Dad by himself for a bit, which is another big step. She seems to be regaining a little of her strength back.
They got a call back from Dr. Chen's office (she's the neurologist.) Nothing unusual showed up on the MRI (other than aneurysm clips.) It was a nurse making the call, so her message was pretty much scripted. Maybe we'll learn a little more after he has his next appointment. BUT NOTHING MUCH SHOWED UP.
And that's great news.
Monday, September 12, 2011
But it's true. Dad took a half a pill about an hour before the MRI and went through with no problems. He was jittery and anxious when I got there to pick them up, but that was smoothed over! I met Melody and she does fit in nicely. It's all love and hugs at this point, I hope it continues.
The MRI was uneventful, except that evidently Dad has a couple of aneurysm clips in his brain.
Mystery Clips Found In Brain!
Now that's a headline.
The MRI tech mentioned the clips to Dad as if they're no big deal, but they certainly come as a surprise to all concerned. Our best guess is that Dr. Jackson put them in to control bleeding when he did the cranial biopsy. Dad certainly doesn't remember anyone else digging around inside his skull! On the other hand, it's an important thing to know, especially if it's stainless steel. Nowadays most clips are titanium, which do not cause problems with MRI's. Does anyone remember anything about this? Maybe the tech got the pictures mixed up? Mom needs to ask Dr. Chen what she can tell about the clips from the new images. Dr. Chen is supposed to call with the results in a couple of days.
We went to lunch afterwards. Dad wanted an enchilada so we went to El Fenix. First Mexican food since before the operation. Tasted great, he ate every bite!
Sunday, September 11, 2011
I had to talk hard to get Mom to give me a grocery list, but she did so I made a Central Market run and took it by. It seemed to be a normal day at the apt. Dad's complaining less and seems more resigned to the fact that recovery is going to be long and slow and hard work. I think that means he's feeling better! Mom seems willing to just let things go more slowly. (Maybe I just got there at the right time?!?)
We put down a new strip of adhesive foam under the living room rug to keep it from moving on top of the carpet. It was particularly loose in front of Dad's chair and as he gets more mobile, it is becoming a bigger hazard. The job took moving a lot of furniture, that is a crowded room. Mom got down on the floor to help trim it and get it down flat. She's surprisingly mobile and flexible. As long as she's got her oxygen she's OK!!!
Dad goes back to the Neurologist for MRI's tomorrow to get the lowdown on stroke activity. Mom seemed surprised that I was planning on going. I assured her that it was not because I thought she couldn't do it. She always seems to think I have more important things to do.
(I don't think so!)
Thursday, September 8, 2011
Those were the words of Dr. Connie Chen, the neurologist we visited today. Dr. Chen is in the same practice as was Dr. Marder, whom we all remember from Dad's last neurological fling, now what, 10, 12 years ago? Dr. Chen is a young woman, Johns-Hopkins educated who joined Neurology Texas " serving as the Hospitalist for the practice in order to focus on her primary interests—neurocritical care and stroke." We all liked her a lot. She is quick to listen, very direct and very communicative about what she is thinking. And she has a vintage Godzilla movie poster in her office. She says it belongs to her office-mate, but that she very much approves.
She said Dad's long time tremor in his arm is a parkinsonian tremor. His tremor(s) were aggravated by the trauma of the valve failure, the surgery and apparent stroke, hence the severe tremors in his arm and leg. When he went back in the hospital last weekend two medications were prescribed: Primidone and Ropinirol. Primidone is a general anticonvulsant which reduces tremor or seizure. It works by controlling abnormal electrical releases in the brain. Primidone is not for Parkinsons. Ropinirole is.
"Parkinson's disease occurs when the nerve cells in the brain that make dopamine are slowly destroyed." Ropinirole is a "dopamine agonist" which "stimulates the parts of the human brain influenced by dopamine. In effect, the brain is tricked into thinking it is receiving the dopamine it needs." Ropinirole is designed for Parkinson's. Dad has responded to treatment.
Dr. Chen said that Dad's PD appears to have been on a slow track. How the traumatic events of the last two months will affect that track remains to be seen. Again, she reiterated that Dad is in good physical health. He has good muscular strength and motor control on both sides of his body, blood pressure's good and the tires fair. And some of the aspects of his health that concern us are the normal effects of significant trauma on an 86 year old man.
Treatment: I quote the from Dr. Chen's discharge notes, "small increase in ropinirole to 0.25mg per day. Watch for side effects: nausea, sleepiness, hallucinations. I would rather undertreat than overtreat in your situation. Let's increase your medications only if your fine motor treatment is servely affected."
On the stroke front: she wants to "continue the stroke work-up with MRI of brain and MRA of head and neck. I suspect it will show us older small strokes.... See me in 6-8 weeks. If you perceive more cognitive problems that are worsening, then please let me know." The MRI is scheduled for next Monday.
I know the diagnosis depressed Dad even further. When she asked about hallucinations, he said he has "a lot of dark thoughts about his condition especially thinking about his future." Dr. Chen said, "that's not hallucination, that's depression."
We talked about his depression while Dr. Chen was out of the office on a phone call. I told him that I thought he was still in shock. He went into all of this thinking that he was a relatively healthy man and that's still his self-image. Except in the last month he's had heart disease, heart surgery, strokes and now Parkinson's Disease. I have to admit, that's a bit much! Denial, Anger, Depression, Acceptance. Stages of Grief. I cycled through several times during my PKD period and wrote about it in my blog. I suggested he might think about some counseling. I would hope that he could talk to Patty Willette and she could help steer him into some help.
I asked Mom how she was handling her cancer. She said she's been ready for it a long time and it's had a designated place on the shelf. She thought for a while she might dodge it, but when it was diagnosed, she just put it where it was supposed to go. I suggested she recognized it by the angle of its elbow. We all smiled. We needed to.
Rough day, rough news. I don't think anyone saw this diagnosis coming.
Wednesday, September 7, 2011
Melody did come today and Mom talked to her about getting more time. It looks like Melody just started working for a man every other Monday. They're going to see about Mom locking down that day and possibly more days in the future. Not enough in my opinion. I'm still very concerned about getting her through the pneumonitis, but she didn't want to dwell on that possibility in our conversation. I think she knows it's there, but she's still hopeful that it won't happen.
Dad had a good appointment with Wiggans today. He changed Dad from Xanax, which Dad says makes him crazy, to Zoloft. Maybe the new drug will be gentler. Zoloft certainly has been good for Susan. Everything else looks pretty good. The best thing is that Wiggans called a neurologist himself to set up an appointment and it's for Thursday (tomorrow) at 1 pm. The woman is in the same group that Dr. Marder was a part of.
I might or might not be able to go with them to the appointment. (Mom thinks that it's because I don't think she can do it, but that's not the case. I don't think I'll get the straight story if I don't go myself.) Also, I've got some lightweight barbells for Dad to use for his arm exercises. (Platt said for him to start pumping iron.) I also picked up a Pecos melon tonight at the Central Market, so I've got to go by and see them at some point tomorrow.
That's it for now. The bad news is that they miss their first Symphony tomorrow night, but Susan and I are going to try and get there and stay awake. Wish us luck!
She said Daddy was breathless again this morning, but better after his walk. Still, she's glad they have another appointment with Wiggans this afternoon.
She did say she got Dad's meds mixed up again, the warfarin, so there is some cause for concern there.
We talked again about the Forum—it would be assisted living, so very expensive. For now, we just need to make sure that Mother and Daddy have enough help at home, I guess.
She got a big kick out of the certificate she received for completing her radiation. Pretty funny.
Thanks to Adrian for helping out. And, always, you and Susan and Helen. Please, please let me know if there's a single thing I can do from here. Love.
Tuesday, September 6, 2011
Last Treatment Tuesday.
Adrian is coming to stay with Dad and Annie is taking Mom for the last Hyperfractionated Stereotactical Radiosurgery today. The last bits of her little stage 1 multilobular tumor is getting zapped. Kind of momentous. The treatment has been so much easier than I would imagine any of us thought it could possibly be. Mom is terribly fatigued, but has been courageous and pretty level-headed through it all. She's making a list of end-of-treatment questions (like, "What happens next???") to ask before she leaves.
When we talked this morning they were waiting for a visit from Dad's nurse whom they don't like. (They call her Nurse Ratched.) Mom was also going to have a long talk with Senior Helpers over the lack of continuity. I summarized our visit at the Forum (see last post) and we discussed the fact that they were going to need increasing care as time goes on. For that to work, they're going to have to have a regular caretaker who knows the drill. Senior Helpers has provided a different helper each time, so everything has to be explained each visit. That's a double whammy for Mom: frustrating and exhausting!
Apparently the neurologist Dad saw in the hospital doesn't have a regular office. That's why it's been difficult to see him. The only number they had at the hospital was his pager and he was off duty and not on-call at the time Mom was calling. They are going to ask Wiggans for a referral to a new neurologist when they see him on Wednesday. Mom wants to see a neurologist herself about the neuropathy in her feet.
So we'll know more tomorrow!
Monday, September 5, 2011
Dr. Wiggans has reduced a couple more of Dad's meds and is talking to Musselman about others. He seems convinced that over-medication is still part of Dad's lethargy. I'm hopeful that he's right, but Dad just doesn't seem to have a firm grip on things. He knows it and that's why he has a hard time realizing he's getting better. I'm anxious to hear what the neurologist has to say. I'll talk to Mom the morning and help get the appointment straightened out. I wish she had said something about it to me yesterday!
She mentioned the Forum to Susan while we were there. We decided not to go to the movies and paid a visit to the Forum instead. Very impressive. Tries very hard to be an American Hotel for elderly well-to-do. Biggest complaint we've heard was from a friend of Marilyn's: if you're not in the right building it's a helluva long walk to the dining room. And she was right. The place was very quiet. The single bedroom unit we saw is quite large, but boy, would they ever have to strip down to move in! (Boy, the overstuffed furniture in the model-room looked so-o-o comfortable! Dad would have NO TROUBLE SLEEPING.)
But that was independent living. And that has the same problems they have now. They need help with showers, meds, basic support stuff, and they're going to need help with that even more when (if) Mom develops the pneumonitis that's the probable side effect of her treatment. (And if that doesn't clear up easily will it develop into pneumonia?)
So, what are the options?
1) Stay at the Renaissance, but radically increase the amount of in-home care. It's possible that Alice, who takes care of Marilyn would be able to provide someone. Of course there's not a lot of extra space to have an outsider in the apartment all the time.
2) Independent Living at the Forum or equivalent. All meals are available in the hotel-like dining room living as needed. It would be living on the American Plan. There is a cocktail hour with wine and beer before dinner. The dining room was set for a Labor Day Buffet when we were there. I bet a lot of the residents dress for dinner! The environs is walker friendly. Our host (the food-bev director, a nice young man from New York) estimated 60-70% of the population use walkers.
It's very difficult for their contemporaries to visit them at the Renaissance, especially since the Renaissance is being very nasty about parking by the bike rack. The only guest parking is upstairs on the top level, requiring their guests negotiate a full flight of stairs. Not exactly handicap friendly.
The drawback with Independent Living is that it is just that: independent living, self-care in an apartment albeit in a 'senior friendly' environment. Mom and Dad are not currently independent. They need help and would need the same amount of in-home care as they would at the apt. Senior help is available through The Forum's Ambassador Program at an additional hourly rate, much like they currently get through Tammi.
4.) Assisted Living provides round the clock help, assistance for things like medication, bathing, feeding, including assistance to and from the dining area. Assisted living residents live in a different building from the independent residents.
Whether the Forum is the facility or not, the questions would be the same. The Rectors faced the same questions and chose to stay in the house. Susan and Meg have provided the nighttime care for a long time now.
The future is daunting!
Saturday, September 3, 2011
Dr. Wiggins wanted dad to see the neurologist again and Mother tried to make an appointment but the number she has is for the hospital, and when she asks for the neurologist, they keep connecting her to another neurology office with which this doctor is not affiliated.
Dad took a long walk yesterday, so he is improving but doesn't seem to feel that he is.
She was exhausted. Dad was asleep.
I raised the question of The Forum with her; evidently, they signed a two year lease for the place they're in now, so there is the question of how/whether they could get out of that. Helen, you probably know about this? I called the Forum yesterday to start the conversation about the veteran benefits; the person is supposed to call me back.
Glen and I are planning to come to Dallas the weekend of October 8.
Tuesday, August 30, 2011
THAT doesn't make any sense.
Well, it was Tuesday anyway. And Braum Burgers??? Stick to the fabulous shakes. Dad and I both suffered mightily last night. And today was the two-week post discharge appointment with the surgeon, Dr. Platt.
1:30 found Mom and Dad just finishing lunch. We still made it out of the Apt and were on time at Southwest Diagnostics for an X-ray. At 2:00 sharp we walked into Dr. Platt's office, new photo in hand ready to see the doctor and met the friendliest receptionist ever. She remembered Mom from when they saw Dr. Platt about operating on Mom's lung way back before anyone ever thought Dad might have a problem with a leaky valve. (Just about three months back.)
After a short wait we were whisked into an examination room and promptly greeted by Dr. Platt. The infamous 'man of few words' (we joked about it on the drive over) greeted us warmly. He examined the X-ray, pointed out the faint image of the new valve and showed us where the aneurism used to be. It was a clean picture, the lungs were clear, everything looked good. He examined Dad and again, everything looked good. He noted that the mitral valve is slightly leaky, but it was that way before the surgery and he did not think it was likely to cause problems. He removed the remains of Dad's stitches.
Dr. Platt again reminded Dad that recovery takes time at his age, but that age was not an excuse not to push rehab. He wants Dad to walk continuously for at least 10 minutes every morning. Speed or distance is not important, what is important is the continuity. If he can build and eventually go for longer times so much the better. He said he would demand 30 minutes at this point for younger patients, but feels 10 minutes would be good for Dad.
What's more, Dr. Platt wants Dad to do arm lifts for 10 minutes with 2-3 lb weights. This can be done sitting in the living room and can be done in the afternoon. Again if he can build to longer periods, so much the better. Speed and number of reps is not important. What is important is doing it continuously for 10 minutes. Both of these exercises are in addition to what Dad might do with the rehab trainers.
He said he'd received info from Southwestern about Mom's treatments and asked how she was doing. He was quite loquacious for a man of few words. Dad goes back in three months. The receptionist asked how busy we would be at Thanksgiving. (omigod!)
As were leaving, we visited with the next patient. A 'young man' (well, younger than me!) was sitting there with his parents holding an X-ray just like we had been. We had noticed them downstairs at Southwest Diagnostics and here they were just like we were. The Dad of the group asked Don how long it had been since his surgery then talked about how much better he felt now. He he remembered being fresh out of surgery like Dad, weak and with a walker. He told Dad that it took a lot of hard work, but to stay with it. The work will pay off in the end. I hope Dad was listening and remembers.
So Dad is at the end of his post-op appointments. He is weak, but healthy. He is frustrated by his condition, but at this point it is going to be up to him to make himself do the work to rehab. Or not.
Mom has a friend lined up to take her to her treatment next Thursday. On the home front they really don't like the home nurse. She's being tough on keeping track of fluid intake, rules and regs that Mom and Dad both like to think don't necessarily apply to them. They've also had problems with the help supplied by Tami. Things just don't get done the way Mom wants them done. Even instructions aren't carried through just right. (No kidding. I've been trying to do that for sixty years!)
Getting along with home care help is going to be the next big issue.
Monday, August 29, 2011
Monday was going to be a busy day. We had an 11:15 appointment with Dad's cardiologist at Presbyterian Hospital and then needed to be at UT Southwestern on the other side of town by 12:45 for Mom's 1 o'clock radiation treatment. The gears of heaven were going have to be well oiled and turning smoothly!
Dad slept great Sunday night and started Monday strong out of the gate, but immediately ran out of gas and was totally exhausted when I arrived to take them on our grand outing. But they were ready and zipped out of the Apt. and just like that we were at Dr. Musselman's. After a brief spat over whether we really had to fill out the medical history forms (Mom said she been told that it wouldn't be necessary) we sat down to fill out the forms while we waited. Before she was finished, we were whisked back to an examination room and after a quick check of the vitals and an EKG, we waited for Musselman.
And waited and waited. Dad gets really worked up in these situations.
"Come on, come on, come on!" "Darnit why won't they come?" "Jeez! What can be taking so long?" "Come on, come on." "Oh, come on, Doc!"
This time Mom and I shared his sense or urgency as there was very little time between this appointment and her treatment. We were just about at the time when we would have to leave Musselman's to get to Southwestern Medical . We were all ready to get up and leave when Dr. M arrived. The sense of urgency seemed to vanish!
He asked how Dad was feeling and listened carefully as Dad elaborated. Then he carried out his exam and pronounced judgement. "You know, you're 86 years old and this was big, major surgery and recovery is going to take time. You are really doing great." Not the first time we've heard that drill! Maybe it's the bottom line truth. The problem is that Dad has a very hard time accepting it and an even harder time accommodating the changes in his life necessitated the facts of his condition.
"Sleep. Eat. Exercise. Rest." Don't try to do too much, but try to do a little more every day. You will have good days, you will have not quite so good days. Slowly you will get very close to where you were before."
I asked about the stroke diagnosis. Dr. M did not show much concern. He said that it's common after open-heart surgery for tiny clots and particulate to circulate and get stuck. He made the aortic valve sound like a rusty old piece of pipe from under the sink! And he said that the recovery regimen for the mini-stroke is the same as recovery regimen for the surgery. "Sleep. Eat. Exercise. Rest."
Dad goes back to Musselman in a month.
And Dad and I scooted over to Braum's for Shakes and Burgers. He had a la-a-r-ge chocolate shake, a chili-cheeseburger and fries. Was quite dignified as he ate the burger with knife and fork! The shake was made with hand scooped vanilla ice cream, chocolate syrup and milk. He drank every drop.
We got a monster shake-to-go for Mom and went to pick her up. Dad went into the building, saw the huge David Bates painting and we were looking at the tall orange Chihuly in the Seay Building lobby, where Mom wandered and met us. Then it was a longish walk through the treatment center and back to the car.
Dad had started out the day exhausted!
The shake picked him up but he went crashed on the way home and went straight to the bed.
A BIG DAY!!!
You'll undoubtedly hear all this when you see them today.
Anyway, I told Mom not to worry about salt and dietary restrictions too much right now, except for stuff like grapefruit that interacts directly with meds. Dad needs calories more than anything, and their diet isn't salt-heavy, anyway.
I tried to find something about strokes in the pons; not a lot. The most interesting info comes from a less than triple-A source—a UK-based net doctor board. So, to be taken with a grain of salt. Ha ha. It did have some interesting stuff, in quotes below. The only other interesting factoid I saw had to do with how afibrillation causes blood clots, which seemed relevant, but there wasn't much info beyond that statement.
And your rant is dead-on: If doctors would take the fucking time to explain what is going on, why they are prescribing what they do, we would all be healthier.
"I think pons stroke is a difficult term to find on a search because it often seems to be categorised within the more general descriptions of brainstem or vertebrobasilar stroke.
The pons is part of the brainstem. It's the lowest part of the brain that connects to the top end of the spinal cord. It's an important and densely packed area.
The pons contains many bundles of nerves that carry movement and sensory messages between the brain and the body.
It also acts as a junction box for all the nerves employed in coordinating movement and balance within the head, neck and body.
Because there are so many important structures within the brainstem, one small area of damage due to stroke can have wide-ranging consequences.
The exact symptoms depend on which biological 'electrical circuits' and junctions lose their blood supply.
This depends on which of the small blood vessels in the area (branches of the vertebrobasilar circulation) becomes blocked.
The symptoms can include:
- difficulties with balance (ataxia)
- dizziness due to vertigo
- uncoordinated eye movements
- problems with swallowing and articulating words
- weakness in one half of the body.
It's not uncommon for people who've had this sort of stroke to feel sick (nauseous) as part of the loss of balance.
Recovery depends on the extent and severity of the initial stroke.
Sunday, August 28, 2011
The big news came from the neurologist though it's been tough to find out anything. (I wish I had been there to see the neurologist. Mom and Dad had a hard time understanding what the doctor had to say.) But the diagnosis was in the the discharge orders.
"A small stroke in the pons," it said.
"What is the pons," I asked.
No one seemed to know. Googling tells me that the pons is the brainstem.
Exactly when this event occurred is difficult to determine. I think it could have even have been before the surgery, but what do I know. Yes, stroke sounds major to me but nobody's playing it up at all. I must say that I am not surprised. Dad's grasp has been fuzzy since the surgery. I'll talk more to Dad about it tomorrow. Also Dr Musselman. More to report then.
Dr. Musselman radically cut down on the Amiodarone, which was the prime suspect for causing the nasty side effects. Since it controls the fibrillation of the heart, it's just as well they took it down under observation in the hospital. If you read about the medication, you would find out that hospitalization during withdrawal is common.
And a small rant on drug administration. I have always found that knowing "why" helps me to "do." (I'm sure Mom would disagree.) For instance, knowing that a chemical found only in grapefruit causes wide variance in the potency of some drugs helps me understand why grapefruit is often singled out as something to be avoided. When the drug controls heart rhythms, it's time to pay attention. In particular, the body is usually only able to absorb 22-95% of the amiodarone in a given dose. The higher absorbancy is achieved when the drug is ingested with food. Hence the instruction, "Take with food." Following all these micro-instructions would sure make life more complicated!
The neurologist also prescribed two medications to control the tremors in his leg and arm (left side) and they seem to be working.
I spent the afternoon getting them situated, getting the new meds and helping Mom get Dad's pills ready for the next week. Helen made a Central Market run and arrived shortly before I left. Dad wanted ground beef patties and buttered rice for dinner, so that was the agenda for the evening.
Tomorrow Dad has an appointment with Dr. Musselman (cardiologist) at 11 followed by Mom's 3rd radiation treatment. I'll pick them up at 10:30 and the plan is for Dad to go see where Mom goes for treatment, maybe followed by Braum's for lunch, if Dad can last that long.
It will be a long outing.
Saturday, August 27, 2011
They ran a bunch of tests yesterday. Some of the results are back. Heart rhythms are strong. Oxygen level is outstanding. Some of his lab counts are low, but that's been known. Basic level of health is good.
One of his doctors, I believe she was the 'hospitalist' was in for the second time today. We were able to give her a better picture of Dad's background which was helpful to her. The prime suspect is the amiodarone which is the drug controlling his heart rhythm. Readers might remember when Dr. Musselman 'doubled' the dose to control the arrythmia two days after the surgery. It was the effectiveness of the drug that made the cardioversion unnecessary. However it does have side effects. The following is from the National Institute of Health:
Amiodarone(a mee' oh da rone)
- loss of appetite
- decreased sex drive
- difficulty falling asleep or staying asleep
- dry eyes
- changes in ability to taste and smell
- changes in amount of saliva
Some side effects can be serious. If you experience any of the following symptoms, or those listed in the IMPORTANT WARNING section, call your doctor immediately:
- weight loss or gain
- intolerance to heat or cold
- thinning hair
- excessive sweating
- changes in menstrual cycle
- swelling in the front of the neck (goiter)
- eye pain
- swelling of the hands, feet, ankles, or lower legs
However she was unaware of any neurological component to Dad's work up. I did mention that Wiggans had discussed it and that I thought someone had mentioned it yesterday. She said she's look into it.
So, breakfast was bad. He's on what's called a grey diet. How great can that be? Someone should smuggle in some salt and pepper to go packets. That would really brighten his life, believe me. Just tearing open the packets will put a smile on his face!
Friday, August 26, 2011
"The good news is that life in the Apt. seems to have reached a plateau of sustainable (in)dependence."
Really? Did I write really write that? When?
About 24 hours ago. What was I thinking?
Yeah Dad felt bad Thursday, but it seemed like they were blaming it on the Ensure. Mom had the go ahead to double her diuretic. but evidently Friday was a really rough day and they wound up going to the emergency room.
Which Dr Wiggans kind of urged them to do when we saw him Friday a week ago. Readers should remember that Dr Wiggans strongly wanted to check Dad in the previous Friday afternoon for a three-pronged evaluation. 1. Check the medication levels and interactions. 2. Neurologic exam (rule out minor stroke.) and 3. General cardiac evaluation. He said that if Dad reconsidered at any time or if he felt worse to go and check in through the emergency room. Again, this was LAST FRIDAY. So, for Dad to decide a week later to go to the emergency room should not be a complete shock. No doubt the symptoms are pretty much the same as our visit last Friday:
"So while we were waiting I asked Mom and Dad if we had our questions ready for Wiggans and they had them down: Blurry and occasionally double vision, confusion, depression, anxiety, increased tremor in the left arm and right leg, drooling, he doesn't hear own voice normally, no appetite, difficulty sleeping."His appetite returned somewhat except for the Ensure episodes and the drooling is better, but other than that everything is pretty much the same.
Obviously I haven't seen them in several days and that's my fault. If anyone else had another perspective or had concerns I was not aware.
I'll talk to Mom and go by and see Dad in the morning before going to work. Hopefully I'll be able to post a report from the store before we get busy. We have over 700 people signed up to come to a Food Truck Festival tomorrow night in our parking lot. Yikes!
Thanks to Helen and Will for staying through the long waits today and to Susan for bringing dinner to the hospital.
I just meant that I checked in with Mom last night for the first time since Monday. And everything is OK.
Mom took Dad to see Wiggans Wednesday. I forgot all about it and never made any arrangements to take them or go myself. Mom can't lift Dad's big four-wheeler SUV of a walker so he used her three-wheeler. Don't know if they carried Mom's oxygen in the basket. Susan thought it would have been so romantic if they had. He still thinks Dad's struggles to recover are tied to over medication so he stripped off a couple more prescriptions which I think is great news.
Dad's also discovered that in addition to tasting vile, Ensure makes him gassy, farty, bloated and cranky. So I think he's done with that. Eat up D-Don, be strong!!!
Frieda (sp?) came and sat with Dad while Annie Sparks took Mom to her treatment yesterday. The treatment went smoothly and quickly. Apparently a lot of the time Monday was still set up. Yesterday they had all the proper coordinates locked in and took the machine up to warp speed right off the bat. Still don't know how many more treatments are left. Mom remembers Dr T telling her five sessions, but only three treatment sessions are on the books, the last one being next Monday. I'm not sure where the misunderstanding is coming from, but I won't be surprised if the doctors are right. (No disrespect, Mom!)
That's all the events on the horizon until next Monday, when Dad's appointment with Musselman and Mom's treatment session are scheduled dangerously close together. Mom thinks we can all do both...
The good news is that life in the Apt. seems to have reached a plateau of sustainable (in)dependence.
Wednesday, August 24, 2011
Dr. Wiggans stopped one of his anti-nausea medications (particularly apt since Dad has shown NO SYMPTOMS!) He was taking it 4 times a day and he seems to be responding positively. When I called Monday, he answered the phone with a strong voice and a strong laugh that I hadn't heard in a long time. Doubling his sleeping medication in the evening has helped as well and now he's getting a proper amount of rest. Appetite is starting to return and he put on a couple of pounds over the weekend.
Mom received the go-ahead to double her diuretic as needed to help swelling in her feet and ankles and that's helped. The next hurdle is Fractionated Stereotactic Radiation which started Monday afternoon. She approached the treatment in good spirits with a positive attitude. She and Dad talked how it had helped to have had her Simulation Day and she felt like she knew something about what she was getting into. As we left, he got out of his chair and kissed her goodbye and held her hand as we went to the door.
When we got to the clinic we were taken promptly downstairs to the treatment area and Mom was whisked back into the labs. There is nice waiting area with great art. The map prints by Nancy Graves, done in the early 70s held particular sentiment for me because it was just what Susan was doing in art school at the time. (She even took a class in Cartography.)
And after about an hour she came out with a smile on her face!
Everything went well. It was a little more strenuous holding her position for the length of the treatment than she had anticipated and she was tired and a little shaky, but mainly I think she was relieved to have the first treatment over.
Dinner had been provided by friends from church. I helped Dad program his new cell phone and stayed for dinner and cleaned up afterwards. A topic at dinner was how they occupy their minds during treatment or exercise. Mom was disappointed she couldn't recite the Books of the Old Testament. It turns out that Dad recites McGraw and McGhee when he rides his exercise bike. He said he might try memorizing the OT books just to see if he could still do something like that.
All in all a successful day.
I guess Dad had an appointment with Wiggans today. I'll find out about it in the morning. Mom's next treatment is at noon tomorrow. Friends had been asking to help, so I suggested she call one and see if she could get a ride tomorrow which she did. I think she was surprised how much it meant to her friend to be asked for help.
Monday, August 22, 2011
Friday, August 19, 2011
Earlier in the day I had sort of forgotten why we had made the appointment. I wondered if I had pushed for it because I expected Dad to start improving more rapidly when he got home and that wasn't happening. But Dad has stabilized the last couple of days. With the Ambien regimen figured out it looked like he could get some sleep and a lot of the other issues seem tied to being tired. So while we were waiting I asked Mom and Dad if we had our questions ready for Wiggans and they had them down: Blurry and occasionally double vision, confusion, depression, anxiety, increased tremor in the left arm and right leg, drooling, he doesn't hear own voice normally, no appetite, difficulty sleeping. We were in the right place!
And then the doctor knocked on the door. Dad listed the issues very cogently and clearly with little assistance and prompting. His language was descriptive and analytic which is not what he usually uses when asked about his condition. Recently his answers have taken the form of immediate complaints.
I really like Dr. Wiggans. He listens very carefully and asks questions about what is being said. When he talks, he presents things in an extremely rational manner.
After the exam, he said that the issues were physiogical, neurological and/or pharmalogical. There's always the possibility of a small stroke, but he was more likely to suspect Dad's meds, He is now on a number of very high-powered medications where before the surgery he was down to just two. Of course we had forgotten to bring Dad's list of meds. The list, generated from MyMedSchedule.com (a great FREE website to create lists to track your medications) was back at the apartment on the dining room table. I was able to remember a number of them. But what he wants to do is re-balance the med levels, he wonders how many are absolutely necessary.
Of course he said the best way to do this was to check back into the hospital where they could closely monitor the effects of the changes in medication under the supervision of a cardiologist and they could investigate any possible neurological issues. Dad would have none of that. He said "I don't remember ever dreading anything as much as going back into the hospital. I'd rather jump out of that window." (An amazing proposition given the height of the window....) Wiggans didn't push the issue. He did tell Dad to stop one medication (Reglan) that he thought was a major culprit. And he left the hospital door open. If things get worse or if Dad reconsiders, we can check him in through the emergency room at any time. We'll probably go back to see him next Wednesday unless Mom's treatment schedule intervenes.
We all felt good after the appointment. One change was made, so that was a step in the right direction.
Thursday, August 18, 2011
She said they got the medication right last night and Daddy's Ambien worked; he got a solid night's sleep. The nurse is supposed to bring more dressings by for the sore today; there weren't any at the house. Will brought by some foam cushioning for sitting and lying down, which eased the pressure point considerably, so Dad's more comfortable. And the Mullins (sp?) from SMAA brought by a coffee cake for breakfast.
Mother rubbed a blister on her foot before realized the problem was her feet and ankles have swollen considerably. She called Hardie who doubled her Lasix, but she needs to get in to see her ASAP. Soonest possibility is Friday morning, but she'll need someone to stay with Daddy. Adrian? I know she said Dave is going to the Wiggins appointment with Dad in the afternoon.
So I feel frivolous, but I'm leaving for Maine in the morning. I'll have my cell.
Wednesday, August 17, 2011
Denise was there from the senior service and was taking Dad's vitals. I was confused at first and thought she was part of the home nursing care, but evidently she was from Tami's senior services. While I was there she did the breakfast dishes and made Dad's bed.
Tami came by soon after I arrived to meet with Dad and to make sure what needs to be done is getting done. She is certainly thorough and supportive! It looks like the Presbyterian/Medicare team will be helping Dad with his showers and wound care, so Tami will be there to help Mom take care of Dad. Groceries, laundry, things like that and Mom certainly needs all the support she can get. She seems to be handling the current load, but there's not much room for any more complexity.
Scheduling is still a little ad hoc. Mom expects to get her final treatment schedule next Monday when she goes for her first treatment. In her mind all other schedules revolve around that. I think she could probably push Timmerman's office on scheduling, but I'm not going to push it. She's telling the services to schedule around her treatments and so that's the way it's being done.
Dad could be doing better.
He has a bedsore on his backside that makes it very difficult to get comfortable, especially lying down. Sleep has been difficult. The 'Ambien' is bottled with the generic name and evidently that has caused confusion and he didn't have any last night.
In general, he does not like taking the 'relaxation' drugs. He says the Xanax gives him bad dreams and that the 'Ambien' doesn't work. I know the feeling. The drug they gave me for sleeping just made me crazy so I would just lie in bed feeling crazy but unable to sleep. Like being awake during nightmares: the bitch is you can't wake up!
It would help if he had a chair in the living room that would be good for sleeping. He finally admitted as much this morning.
In general, he's still a little confused and complained yesterday of blurry and occasional double vision. Mom called into Dr. Wiggins this morning. When Dr Wiggins called, he talked to Dad so it's difficult to find out exactly what he said. (Dad's confused and has a hard time remembering things.) Dr. W wanted to set an appointment for next Monday afternoon, but that conflicted with Mom's treatment, so they pushed it back to NEXT Wednesday. I told Mom that was unacceptable to call back and renegotiate. She did. We see Wiggins Fri. He seemed to think what's going on is normal post-op, but I know I'll have a better weekend seeing the doc on Friday!
So it's now 2 pm. I just talked to Mom and the physical therapist is there and I've got to get some work done!
Monday, August 15, 2011
At the house now for a few hours. Dad changed into slacks and a clean shirt and is quite content to occupy his chair. Made it through the mail. Mom's cooking lamb chops.
Got all his prescriptions filled, but now have to get Dad's attention and work on learning to organize his meds. He doesn't want any part of it. Much more interested in a 'news' show (Jim Lehrer) on an Australian production of Uncle Vanya!
Thursday, August 11, 2011
Mom was ready to go and we were there right on time. Went to the Moncrief Building entrance on Forest Park which opens into the waiting area for Timmerman's practice. Miss seeing the Chihuly, but avoids the long walk. Per agreement I dropped her off and headed home for a quick nap before heading in to work.
They had estimated the appointment would take about four hours, but Mom called after an hour and said she was ready to go! They fitted her with her custom-form-fitted air mattress which Mom said was surprisingly comfortable and holds her arms above her head with no strain. She's strapped down to avoid movement. She's so thin they had to use makeshift body spacers to tighten down the straps! Tattoos on her chest and knees for the machine to use as locus points. "The needles felt like just like shots," she said. "I just can't understand why someone would want to do that."
The tumor doesn't move when she breathes, so the motion tracking took no time at all. They normally use scans with dye, but can't with Mom because of kidney/clearance issues, so that saved some time as well.
When I picked her up she said she was "feeling kind of peckish," so we stopped at Braum's for burgers and shakes. Then onto Central Market for grilled chicken breasts and salads for dinner tonight.
When I left her at the apartment she was headed in for a nap.
He says the food is awful and the bed is from hell; he hasn't gotten a good night's sleep since he's been there. Wonder how much difference at-home rest and good food will make. He's still surprised at how weak he feels. He says the goal is 150 steps. When he can take 150 steps, he's ready to go home. When he can take 300 steps, he can go shopping. I told him to stop at 299.
He was very relieved that Dave had taken Mother to her appointment today. He told me to call Mother and see how her appointment went.
Mother called when she got home and sounded really tired. I'm sure she's stressed out, plus forgetting to turn on the oxygen.
She sounds very upbeat about the woman who came to help yesterday and said Tami promised she would like the regular woman just as well. I'm so glad that worked out! She also said Adrian had been a big help.
I'm still shopping plane tickets all the time. We're in Maine from 8/19-8/27, so I want to come down soon after that. But I was also thinking I'll get at icket to come down on Mom & Dad's anniversary on 10/8 and there's a ticket available now for $210 which is pretty good. Thoughts?
Mom said the help yesterday was great. Many things were accomplished to make things ready for Dad.
I asked her to think twice about driving herself today. Good possibility that she'll be a lot more tired than she thinks after her appointment. She did reconsider. I'm driving her there and picking her up, but did agree not to wait there.
So that's the plan.
I did NOT talk to her last night and get the Committee Conference Report.
Tuesday, August 9, 2011
Though it turns out that the only day he missed his excercise was yesterday. Dr. Musselman listened to his heart and lungs and pronounced him doing great. The pain he felt in his shoulder/chest was normal as his body recovers and nerves wake up.Dr. Platt came by, did the same and said "Two weeks after they let you go. Don't forget." He said the same thing, hmm, has it been two weeks already? Maybe so!
He dreads falling asleep too early because he doesn't want to wake up in the middle of the night and not be able to get back to sleep on the nightmare bed from hell. He's starting to sound like Sam Magee. The good news is that hs therapists are talking like he'll be going home. His Committee conferences tomorrow! We'll know more then.
While I was there, Dr. Kirkpatrick stuck his head in the door. He was walking down the hall to check on another patient, saw Waddington on the door and figured he knew who it was. Of course he asked about Mom and was glad to hear treatments are moving along with Timmerman. Nice of him to drop in. (We'll know if it was social if we don't see a billing for today's date!)
Mom did get a hold of Tammi at Senior Services (or whatever they're called) and they're sending someone out first thing in the morning to get the apartment set up for Dad's return.
That's all for now! Time for dinner.
On Sunday, she got a tricycle walker that is small enough to go into the back seat of the car and light enough that she can just about maneuver it into the car by herself. (Watching the process is part of that "letting her do what she can" without interfering. It's hard.) The walker has a place to carry her oxygen tank so that is one burden off her shoulders.
Anyway, her doctor prescribed Lyrica, a drug used for fibromyalgia, for the neuropathy and gave her a sample. She took one Friday night, her dose on Saturday and part of Sunday's dose. At that point, the pills were making her very giddy and silly. Not Mom's usual demeanor, but cute. The drug did nothing for the numbness. She did not take her Sunday evening pill.
Adrian spent Sunday night at the apartment. He helped her by doing chores on Monday then drove her to the hospital.
By Monday evening she was back in the real world. She ate a great meal and went to bed. She called the doctor but had not gotten any new drugs by Monday night.
I have been in touch with Tami. She and I have talked several times and she is ready to send someone when the arracngements are made.
What happened next is confusing to me. I think the issue is that Kowalski (who was 'on call' over the weekend) gave someone a hard time over mode of notification, but that's in the garbled past. I think China came into the fray because Kowalski was the first cardiologist called onto the case wa-a-ay back in the gitgo. But he was in China and so Musselman got the case. (I could be all wrong, but this is what I understood from Mom this morning.)
ANYWAY, Musselman came by this morning and gave the OK for exercise and said such muscular aches and twinges are normal for post-op and rehab. Dad called Mom on the phone what we are hearing is Mom's interpretation of Dad's impatience. He's concerned that the slightest set-back will cause him to not be up to speed enough to be released. The thought of needing to be in the hospital another week is his main concern. I think!
I'll go by tonight and check up on Dad.
The main news to me this morning was Mom's adventure with Lyrica which Dr. Hardee prescribed for her neuropathy (numb feet.) Evidently it made her loopy as all-get-out. Five Scotches was Mom's description. It's out of her system now. I don't know the next move.
Mom's big news was her successful outing to her exercise at Finley-Ewing. She's beginning to understand that it's really going to take her a long time to get going with her new logistic issues. BUT she made it there with extra oxygen carried in her new walker. Needless to say her everyone there was THRILLED to see her!!!
She is really fighting for independence. Successful outings like this are important to her on a deeply personal level. I think it's deeper that just pride and I think it's important notion for us to respect and observe. We just need to be judicious about the circumstances.
I do not have a number for Tammi and the Senior services group. I'll talk to Mom tonight and see if she got through.
Also, she said she got up and about and went to the gym today. Yay!
She also said she put in a call to Tammi at that Senior Services outfit. She wants someone to come at least one day a week. Mother had not yet received a call back, and she wanted to start asap. Stupidly, I can't find that contact number. Can you send it to me or follow up with Tammi?
Sunday, August 7, 2011
Not much else to report. The rehab pace slows a little on the weekends. Still a little weakness and hesitation to his movements. A lot of handshake when he holds the telephone to his ear.
Michael Malouf came by. It was good to hear him talk about John as he recovered from his heart surgery a couple of years ago. Dad is used to hearing people talk about how well he is doing with his recovery but he's not inclined to believe them. His expectation of himself is that he should be (and needs to be) a lot stronger in a hurry. It's good for him to hear anecdotal evidence of the quickness of his recovery. I pulled up the picture of him on his first walk two days after surgery. Both Malouf and especially Dad were shocked at his appearance in that photo.
Dinner arrived while we were there. He was shocked that he had ordered the Pot Roast. He didn't eat. Mom and Helen were bringing dinner.
We left and crossed paths with Mom and Helen in the parking lot. Mom bought herself a three-wheeled walker with a basket to carry around her oxygen tank. Wearing it on one shoulder is tearing up her back.
That's it for now!
Thursday, August 4, 2011
We had a little confusion. The directions they gave Mom over the phone didn't quite jive the directions I googled off their website, but we finally made it to the Seay building at UT Southwestern and were greeted by the bright orange glass installation by Dale Chihuly. (See previous post.) A real treat! Mom and Dad had tried to see it when it had been installed but had been unable to find it then. Then it was past a very large David Bates painting and on to the doctor.
After check-in and vitals, we met first with nurses who took Mom's history and gave us a brief introduction to the process. Then we met with Dr. Timmerman and his team of resident oncologists. Everyone's manner was great. The attitude is realistic positivism. Their approach to attacking cancer is new and there is sense of ownership of the process.
What's new is the amount of lethal radiation Dr. T is able to focus on the tumor. Conventional radiation used a lower dose spread over a greater area. The problem was how to kill the tumor without killing a wide swatch of healthy tissue as well. The thinking was that radiation knocked the cancer back some and chemo and/or surgery would take out the rest. Sterotactical Radiation uses many low dose beams from many points of origin which converge and concentrate on a single point and deliver a much more powerful and lethal dose of radiation, doing major damage to the tumor. The Ghostbusters had it figured out. Crossing the streams is bad. Dr T crosses many, many streams.
The goal of the treatment is not to remove the tumor, but rather:
- "To terminate its growth pattern."
- "To shock it to prevent further reproduction of the cancer cells."
- "To castrate the tumor."
- "To pound the tumor with a potency that was never approached in older radiation therapies."
Sounds pretty good. There are some drawbacks with this focused treatment. With a tumor this size there is a good possibility (30-40%) that there are other cancer cells existing in Mom's lungs that are not yet detectable. We are doing nothing to prevent their growth. Frequently patients undergo chemotherapy along with this radiation to clean things up, but with Mom's kidney issues and general frailty, this is not a great option. The best thing is to keep our eyes open and catch and zap new growths as they appear.
Everyone was very emphatic about the lack of side effects at the time of treatment. Radiation is not quick. They don't see why someone who is driving can't drive themselves to and from treatment. "NO DOWNTIME, NO FATIGUE." was repeated.
HOWEVER, there is the possibility of long-term side effects, which affect about 15% of their patients. These are generally lung issues such as coughing, bone damage and pneumenitis, These are caused by collateral damage to the normal tissue. They 'burn' about a quarter-inch perimeter of healthy tissue around the tumor, to be sure they get the whole tumor. This healthy tissue might include ribs, airways, blood vessels, whatever is in the way. Such damage will start showing up 3-6 months after treatment. My guess is that the tricky thing will be discrimination between pneumenitis (inflammation treated with steroids) and pneumonia, especially with Mom and her COPD.
Dr T and his crew emphasized their availability and we were given plenty of business cards with direct numbers. Again everyone was very friendly and direct and quick to laugh and smile.
The process will involve 4 appointments.
The first is call "Simulation Day" or as Dr T. put it, "a day when we actually get to PRACTICE medicine." Unlike, say, surgeons. They will make a custom form fitting bed for Mom to use during treatments so her position will always be the same. They will plan the directions of the beams, based on imaging so they will know how to set up the equipment to attack the tumor. The treatments last about 25 minutes, so Mom will breathe and chest will move. To track it, she will get 4 pencil point tattoos that will be used to track her motion. The beams will then move accordingly. This appointment will be somewhat long and arduous.
Treatment will be in 3 sessions over a two week period. We need to allow about an hour for each appointment. Mom should be fine afterwards.
Scans will start about 3 months after treatment. Dr T says the first scan always looks great and everyone is thrilled. The second scan starts looking cloudy as scar tissue begins to slow and by 9 months the scan is a murky mess and people get worried. BUT he's supposed to be the best at reading them. That's why he is who he is.
Susan grilled him pretty hard over the side effects and collateral damage issues. They pulled Mom's image up and we saw the tumor. It's an ugly globulous thing and occupies a larger part of the upper lobe of her left lung than I had imagined. Google lung cancer images if you're interested in seeing some.
Overall, we were very satisfied with the appointment and the direction treatment is headed. The original Sonny Bryan's was right across the street and we left right at lunch time. Nothing like a good sliced beef sandwich to make you feel better. We got one to take to Dad.
Wednesday, August 3, 2011
His Committee had their Conference this afternoon and decided he needed another week of rehab. Mom said they noted his 'hesitation.' Dad didn't disagree. He knows that he can't rely on Mom's strength. I watched some of his session this morning and for all his progress, he has a way to go to get around on his own.
I will spend some time tomorrow and see if I can de-clutter some of his pathways in the apt. Throw rugs, things like that.
Meeting Susan in the morning at the apt. we we'll head to Dr Timmerman's office. Will post more then!
I called Daddy at the hospital today, just for a voice check, and we talked briefly about his therapy sessions. He says they're really "boring" and tiring, too which is discouraging, because he felt fine going in to the hospital and now he feels like an invalid.
But, he said, he knew he had to keep up with it so he could be strong enough to take care of "your mother."
Had my usual Wednesday morning conversation with Mother. Joe the blessed dry cleaning deliveryman was just leaving. One more person who watches out for Miss Polly. She sounded good—took a nap yesterday, slept all night last night, had cheese and a tortilla for breakfast. She says this afternoon is when all Daddy's docs and caretakers—nutritionist, therapist, cardiologist— will meet to put together a progress assessment, prognosis, recommendations and general where- do-we-go-from-here. The social worker will give Mom the report and talk it over with her.
Got a call from Nancy and Joanne Bondy, wanting to know if they could visit Dad in the hospital or would it be better to wait until he got home. I said I didn't really know. Thoughts? xxoomm
Found him fully dressed and looking chipper walking down the hall on the way to the gym. Well, walking with his walker, a nurse hanging on to him and dragging a wheel chair. After a little bit he sat in the wheel chair, I took over the walker and we headed on down to the big gym.
A big room with half a real car, a kitchen, bedroom, bathroom, produce department in addition to various exercise tables, motion resistance machines and a few scattered nurses and patients. We headed first to the bathroom area where Dad learned the safe method for getting in and out of the shower, from walker to chair and back to walker. Emphasis on steadiness, minimum turning, taking time and letting blood pressure adjust when changing elevation.
Then we headed to the bedroom where Dad turned down the bed and practiced the correct procedures for gettng in and out of bed. As much as he's hated the hospital beds, I thought he might just fall asleep, but he pronounced the mattress a little too soft, Again, the emphasis is on taking time for the blood pressure to adjust and a big emphasis on avoiding 'sternal' pressure. Any movement that exerts the chest needs to be avoided. Big arm movement, pushing, pulling, lifting.
A few notes: He will need to have a chair with a back and arms in the shower. Dad says his current chair is just a stool. The 3-way chair over his toilet will do. He will need a walker similar to the one he uses in the hospital for a few weeks for the stability. He tends to wander rather than walk a straight line and needs a stabler base than the wheels. We'll need to be sure he has clear path with the walker and does does not have to move anything out of the way to get around. And I'm sure that's just the beginning. Yesterday he practiced picking up clothes with a grabber.
As I left they were headed for the arm/hand muscle manipulation table for some strengthening exercises. I asked if anything had been mentioned about timetable going home and the rehab nurse said his 'Committee' was having a conference today to discuss his timetable, so we need to be on the lookout for news on that front.
Monday, August 1, 2011
Much better look than his hospital gown. He'd just been to the gym for his second workout of theday and was pretty tired. Mom said he had a rough night and was out of sorts today. But then, he's out of critical care and he's in rehab, so no more molly-coddling!
Travis was in town, so that was a great surprise to Mom and Dad. He's off to Chicago in the morning. We went to church for the last gathering of the summer choir and endured the gauntlet of FOP's (friends of parents.) They each get their own name on the prayer list. No shared time when it comes to getting God's attention....
Saturday, July 30, 2011
Jackson, Day 2.
Visited today with Susan and Travis. Dad seems much stronger and is starting to look a little more like himself.
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!