Monday, September 19, 2011

Again

Well, I have been comfortable in life, Dad's health has continued to improve after leaving the rehab. Home Care has been coming out to visit him, 2 people, 3 times a week. His coordination has improved and he has returned to moving around the house, getting to the bathroom and kitchen while using his walker and doing self-care tasks like brushing his teeth and shaving. Getting into the shower has proved to be a challenge. Of course a tub-bath is out of the question.

The doctor has been pleased with Dad's improvement. Two months ago the doctor scanned Dad and found the cancer had indeed shrunk and maintained the reduced size. So the doc ceased the chemo, opting instead to allow his strength to return without the drain of life which chemo presents. Dad has been able to return to the front porch and sit in the sun, a great benefit. Neighbors have come by and sat with him, talking about whatever came to mind. All of this activity has proved to be a boost to his mental energy and attitude, in-spite of the pain which continues to plague his body.

One of the rehab personnel who visits each week is Don, a nice guy who proved to be not only interested in his assignment, but sits and talks with Dad too. Don has worked hard, ignoring Dad's attempts to get out of doing his rehab exercises, and actually got him out to the front yard where Dad has hit many golf balls. Not exactly Dad's goal, which was to return to the golf course, but close. Whacking golf balls, while Don holds him from behind with a belt for balance, has proved to be a good thing. But Dad continues to restate his goal of going to a golf course to play at least 18-holes.   In truth his energy and balance will not allow the return but its nice to know he has the chance to swing a club and hit the balls.

All of this 'return to normal life' was due to the cancer being shrunk by the chemo, but guess what?  Yea, the demon is back, the cancer has raised its ugly head. A scan was completed 2 weeks ago and the doctor reported to Mom and Dad that the cancer has returned to its original size before chemo was started. This past Thursday Dad restarted his treatment regiment which will be 3 Thursdays of treatment and one Thursday off; one large monthly treatment dose, like many people receive will be overwhelming for him. Remember the last chemo regiment was to much for his immune system and he developed the infection of his skin, lost his strength and was admitted to the rehab center.

Pray for us, it has returned.

Saturday, July 2, 2011

Could Tell A Difference

It's been a couple days since I got home and settled back into the daily routine. I checked in with work Wednesday and things seemed to be ok, I caught some snoozing minutes, washed clothes and made it into work the next morning. I had to take it nice-and-easy while reviewing what seemed to be hundreds of emails and responding to them all. While at work Thursday I called the rehab and checked on Mother and Dad, he was still working through the regular routine, a couple rehab sessions during the day and squirming in the evening and night.

A nurse friend, who is reading my posts wrote me Thursday to tell me that Dad's uncooperative behavior in the evenings sounds like, 'sun-downing' which she said is marked by a change in cognitive and physical behaviors, often with confusion, anger and combativeness; which goes away after sleeping or when the daylight hours return. Knowing this is good, but it doesn't resolve the problem, but it feels good to know he is not losing his mind, or developing some sort of cognitive status.

Thursday it was decided that Dad should go home. He has been standing and walking short steps, but his cognitive skills have not improved. The discussions have centered on the facts that when elderly are out of their regular routine and environment their skills and abilities can decline, the decision was made to return home and bank on the idea this will help clear his cognitive confusion. 

So Friday he returned home after a hospital bed was delivered and setup, along with a bedside commode and wheelchair (remember he already has a walker). He slept the day away one he returned home, and had a small dinner Friday evening. I'm concerned that he will get pushy with my mother and brother, be demanding once he senses he can get away with more at home. I talked with my mother Saturday afternoon and she said that Dad had been asleep a good bit of the day but he woke up several times and she feels his mind is already starting to clear, and return to normal. I found this almost to hard to accept but told her I'd give it some time and hold onto confidence it will work.

I spoke with her a few minutes ago, and she put Dad on the phone toward the end of our conversation. Guess what?  I believe I could tell a difference, but not that much of one; hopefully it will happen and he will return to his 'bright, cheerful self' (ROTFL!!!!), well at least his normal self.  I will check on him Sunday and post something later in the day.

Now the cognitive improvement does not solve his cancer issues, but at least he's home for the July 4th Independence Day holiday!!!!

7/2

Tuesday, June 28, 2011

Rehab Improvements and Heading Home

Since my last post Dad had 2 days of therapy. During this time he has continued to eat all of the breakfast food, most of the available lunch and some of the dinner. Maybe he is tired in the evening, or just likes food earlier in the day. I tried to pay attention to the textures of the meals to see if that has anything to do with it, but all I was able to tell is that he likes breakfast food. Over all breakfast food has more carbohydrates and fat, dinner items seem to have more protein and fat; heavier types of food to consume…it’s something to think about.

There was no rehab sessions on Sunday (he gets a break from exercising on Sunday), but Dad still got a workout. Brothers and sister visited him, along with several cousins, and other family. It was a busy day and he seemed happy to see them, but got tired in the afternoon and fell asleep, like many other days. He slept so long in the afternoon that a couple people visited but he never woke-up to say “Hello.”

Rehab efforts have continued and he is standing alone, slowly while using the wheelchair as a ‘crutch.’ The rehab folks mentioned that several steps have been taken, slowly - but at least he did take the steps. It was something to celebrate and everyone gave praise and congratulation for the accomplishment. Dad mentioned to me while alone together that he will walk soon, “Get ready.” Cognitively Dad knows he walked in the past and is a little frustrated that it's not happening now, but seems determined to do it again.

But at the same time, in the evenings and during the night he appears to be a different person; like a “Jekyll and Hyde.” Dad practically sits-up in bed, with an angry look in his eyes, firmly grits his teeth, holds out clinched fist, and mumbles orders or thoughts; it is quite scary in a way. When someone asked what he said, or meant cold-heatedly eyes stare back, but he doesn't say a word. It seems as-if he may not know what he is saying, but in either case I don't believe he understands what is being said back to him. If he were able to get out of bed it would be even scarier, but we all know he does not mean what he is doing, and we all know he has never hurt anyone.   

During the evenings Dad argues, squirms around in the bed and tries to pull his clothes off, along with the catheter. This uneasiness might be caused by the catheter, the drugs he’s taking, or maybe it’s just cabin fever from being cooped-up, first in the hospital weeks ago, then going home and then coming to the rehab center. Any case, the nights are long for the rehab staff (family has not been staying with him through the night the last couple nights) and he appears to be quite tired in the mornings. If he could just get on a regular sleep cycle many of us believe things will improve; but with all the constant drug usage Dad falls sleep during the day and is restless during the night.

I have not posted the past couple days; I am driving home now (it's almost midnight now), but wanted to squeeze every moment out of the previous days and spend time with Dad, my mother and family; writing took a backseat. Before leaving I had 2 days of my favorite local, hometown burgers. I ate too much and probably upset my stomach but after growing up on the sandwiches it’s hard to shake the urge to ‘pig-out’ when possible. I told someone in a tweet earlier in the day Tuesday I’d be stopping at Starbuck’s to post something but I got a late start and just lost track of time; starting later than expected I wanted to get out on the road, and get home.  So, here’s my late post from a truck-stop type location using free Wi-Fi; I will post this and get back on the road. I should be home by early morning (after sun-up), dead-tired but I will check-in on work, sleep and then post an update if I can. 

Dad Recap: Dad is still in rehab with no plan as to when he will return home, but hopefully this will happen soon. 

6/28

Friday, June 24, 2011

Pain

Thursday started off like the others, breakfast went well and the first rehab exercises went well too. But as the day wore on Dad started to have a lot of pain, the kind that is bone deep and unavoidable. He seemed to become anxious and continued to complain of pain. Maybe the exercises are taking a toll. His medications were reviewed and more pain medication was administered. This additional medication seemed to have had a negative impact on his behavior and recovery progress.

The second rehab visit for the day did not go as well as been the case. Later when Dad was taken to the community room he did not cooperate and tried to leave the area. This was not allowed by the 'clinicals' and was returned to his room. In a short period of time he was back in the bed, moaning about the pain and complaining that no one was listening to him.

Everyone came to the conclusion it was the pain medication causing the behavior problems. The evening continued with the same issues and my brother came to the rehab site. When Mother and I left for the evening Dad was sleeping and expected to continue through the night.

More to come in the morning.

6/23

Wednesday, June 22, 2011

Accomplishments

It was another good day in regard to accomplishments. Dad ate a good breakfast and lunch went OK too.  Mother and I got out there around 9am and just beat his breakfast tray arriving to his room.  He insisted on trying to eat the food alone; this went OK but we still helped in the hard-and-eye coordination category. But rehab picked him up and away he went, 30-minutes later he returned with another good report. He is trying and stood on his own and took a couple steps, but after returning he fell asleep and the person who brought him back mentioned that he may sleep several hours due to the exhaustion of his movement. He did sleep and we woke him up when lunch arrived. Afterwards he was taken away for another 30-minutes exercise excursion. 

When he returned a doctor came by to test his strength and it was mentioned that he should not be allowed to stand while alone, and advised that his bed should be lowered to the floor, so that if/when Dad is motivated to move off the bed he will not take part in a fall due ot his accomplishments. It made sense to us and we both nodded.  

Later in the evening the rehab site had an ice cream outing for residents out on the patio. Dad didn't got outside for this, but he enjoyed the ice cream. A consolation from this, he say up for 30-minutes in the wheelchair. Nice!!!  

Mother and I went home for dinner; she went to bed early, I'm still up.

Tomorrow will be another day of accomplishments.  

6/22

Tuesday, June 21, 2011

Small Steps

Today started off like all the others, with breakfast going well. Dad had a biscuit and some gravy, yogurt, a waffle, milk and juice. Then the 'clinicals' did their morning visits; checking vitals, mental responses, rearranging bedding, and helping him put on his clothes for rehab exercises. This clothing consist of a form of pajamas (house pants), socks with a non-skid bottom and a t-shirt; easy and comfortable. Around 10am he was wheeled away for the first session and 30-minutes later he returned. I rolled him down to the community room and he watched some TV while I enjoyed the break.

But he did not allow this intermission to last long; the next thing I knew he was trying his 'slide-down' tactic. I mentioned that it was not what the 'clinicals' wanted but he continued. They came in once and straightened him up, the second time he was moved out into the hallway, again. We were advised to let him sit there alone, so I did not stay with him and mother sat in the room. In awhile they brought him back in for lunch and then took him away again for more exercise.

I've been thinking about some comments I received since yesterday's post and how people were happy for my dad to be testing the limits of his abilities. I had viewed his behavior as being testy - when he returned from exercising we were told 'he is doing good'. So both mom and I complimented him on his effort and progress. He smiled....and then said he'd like to lay down. :-)

He napped for about half and hour and then sat up the rest of this afternoon/evening. The evening ended like the others, with my brother and family coming out and taking care of the later portion of the day.

It was a good day!

6/21

Monday, June 20, 2011

Opportunities

Well, breakfast was completed this morning with little problem. It seems Dad has come to the conclusion that breakfast food is good.  He ate everything but we still had to help him, guiding the fork and spoon to his mouth. I could feel it in his hand though, confidence seems to be building, he did not seem to be as timid in trying to eat as he was a few days ago.  Afterwards a couple 'clinicals' came in, cleaned him up, helped change his clothes and off to rehab he went. He did not seem to care that he was going but still commented that he was sore and he made sure his meds were taken before he rolled down the hallway.

Thirty minutes later he was back and some of the team helped with his bathroom duties and then lunch arrived. As you can tell, not much happens between breakfast and lunch, at least not in my notes. But during this time meds are brought in, reviews on how he feels take place, and bathroom duties are completed. Since he can not get himself from one place to the other he still depends on a catheter, and bed pans are still being used.

After lunch he tried to lay down but soon afterwards a pair of the staff came by and rolled him away to rehab. The look on his face was not of pleasure and he commented again that he would like to go to bed and sleep. That did not happen and he later returned, but was not brought in the room, but rather rolled down to the community room and was left with me and mother, along with an uncle and his wife. Dad didn't want to stay there and slid down in his seat. The rubber mat was placed under him and he 'sat still.' After an hour or so they took him back down the hall and he sat in his room. But he slid down in the chair and actually made it to the floor this time. When the staff came in and asked what happened Mother told them he managed it himself and would not listen to her. They pulled him up in the wheelchair and told him, "Since you won't behave we'll move you out in the hallway so we can keep an eye on you." The look on his face was like a kid caught with his hand in the cookie jar, but he did not complain. After a short time he was brought back to his room and moved back into the  bed.  The staff mentioned that his behavior is not something to be overly concerned about that this is not uncommon, or things like it with people newly admitted. They also commented that the drugs can sometimes add to this type of behavior, at least for a day or two. Improvement is on the way!!!

He slept a while after returning to his room and then ate dinner with no event, but he still had to be coaxed to eat all the food. My brother and family came out earlier today; Mother and I left earlier than we have to this point (got home 8pm). The adventure and opportunities continue tomorrow.

6/21

Sunday, June 19, 2011

Wheelchair Trouble

Sorry for the late post. Dad had his first rehab effort yesterday and it went well. No family was allowed in the room, mostly so he would give it his all and not try to involve family in some way. Reports back to Mother were that he was successful in standing with assistance and he took a couple steps using a walker device (and watchful eyes and helpful hands). Returned to his room by the rehab team he headed for the bed. Lunch arrived about 20 minutes later and he had to go through a 'waking-up' process, including the groggy "what's going on look", and after that he was returned to the rehab team which worked with him on 'hand-eye' coordination. He can't feed himself completely but he tries to get the food, spoons, forks, etc. to his mouth; so this kind of rehab exercise will be of great use. He returned to the bed and slept for a couple hours after the last session and about an hour or so later dinner arrived. Again he went through the 'groggy phase' including the 'you eat it' and 'I want to go back to sleep' comments. As has been our developing schedule my brother and family returned in the evening and stayed the remainder of the night.

Mother and I arrived this morning before breakfast and served as encouragers. He ate everything and wanted to go back to sleep but the clinical folks had a different plan. They got him into a wheelchair and left him in the room to watch TV, talk, etc... He seemed to have been bothered by this and just kept mentioning the bed. Looking directly into his eyes I told him he had to stay in the chair until one of the staff could come talk about the plan for the day and decide what course of action to take. They did come back in and asked him to stay in the wheelchair; this is when things got interesting.

They pushed him down to a community room where other patients and  residents meet; watch TV, talk with visitors, and wait to be returned to their room, rehab, lunch, etc...  This is when Dad started squirming in the chair. He kept slouching down and sliding out of position, lower and lower in the chair and had to be re-positioned. Two girls came back in, and by the arm/shoulders lifted him back up into the chair. In a few minutes he did this again and the entire process was repeated.  When they left he started it again and the head nurse came back in, had him lifted up in the chair again while she slid a rubber mat under him. This stopped the scooting out of the chair. Not being able to slide down in the chair and cause the staff to return seemed to bug him a little but the rubber sheet worked and no one had to lift him again.

Shortly afterward some clinical types came by and took him to another rehab session. Thirty minutes later he returned to the room and was left in the wheelchair for lunch. He ate very little of the food and then was transferred to the bed (a lift of sorts was used to do this transfer). He slept for several hours and then went back for another 30-minute session, then was returned to the room. Dinner arrived an hour later and my brother and family repeated their efforts as encouragers and visitation company for him. Mother and I returned home around 9.20pm; we are preparing for tomorrow morning, the family will do it again.


6/19

Saturday, June 18, 2011

First 'True' Therapy Attempt

Good morning!! Breakfast for Dad started out OK, and guess what?  It ended OK too!!! He ate a biscuit, yogurt, a pancake, milk and juice; he tried eat it alone but we helped when his aim was off (he missed his mouth by centimeters). But I believe his trying is a good sign, a sign that he wants to do it and  will continue to try. A couple clinical people just came by, got him out of bed, helped him dress in some house pants (sort of like pajamas), them took him away for therapy (hopefully standing). They told me and Mother that it will be 30 minutes and then he will come back for lunch. I will post an update later today after we see how things go.  

6/17 8.45am

Friday, June 17, 2011

Continued Progress?

Mother was ready to get out of the house this morning; she woke up around 6.30am and must have caused me to wake up (I guess), I found her already dressed. I wanted to drive her out and get some breakfast, so quickly I shaved and got dressed (good thing I pressed those shirts!!).  We arrived to find Dad awake and sitting up in the bed. He looked surprised when we walked in and said, “Hey, how are you?” We responded and Mother started to ask him how his night went, if breakfast had arrived, etc…  His breakfast had not been delivered yet and Mother started commenting to him about being ready to eat. He said something like, “You eat it” and I told him that the food would be for him, that I’d already had something for breakfast (actually we’d not stopped; Mother wanted to go straight out).

In the meantime a nurse came in to administer some drugs, and a parade of other clinical personnel came to the room over the next couple hours, breakfast being one of the things to come in. The breakfast consisted of juice, milk, a waffle of some sort, yogurt, and some bacon. He did not want to eat but after some prodding and more talk about how expensive the food is to waste (he’s always been big on the proper use of money; I thought this might appeal to the older part of his personality) he finally did taste everything and ate most of it. He loves the Activia yogurt, so that was a sure thing and I learned today that he loves juice or sweets because it went fast.  Shortly after breakfast my sister-in-law arrived and stayed with us for a couple hours.

He's been sliding his leg off the side of the bed in an attempt to get off the bed (at least that’s what we thought he was doing). But after several attempts I realized it could not happen and quit worrying about it so. But we're concerned that his leg hanging off the bed would cause it to hurt and continued to encourage him to stop. Finally the nursing staff had put up with it enough and placed his feet on a cushion of some sort that had elevated sides that kept his feet in between the sides and on the bed. Thank goodness!!!!

Lunch came around noon and the eating adventure started again and went about as well as breakfast. Mother and I stayed the day and my brother and his family arrived around 5pm…  Dinner arrived about the same time and my brother and his wife worked with Dad to get the food inside him. He tried his, “I’m not hungry” and the "You eat it" again, but they did not go for it and got him to eat the food.  We had a lot of talk about him and encouraging him; Dad kept falling asleep (this had happened throughout the day). Due to this no real therapy took place, other than sitting him up in the bed and hand-eye coordination while trying to eat.

Mother and I stayed for another couple hours and then took off in search of food to take home to eat late in the night (we're eating now). My brother and his wife were there when we left. 

6/17

Thursday Efforts for Rehab and Eating

Yesterday (Thursday) Dad did some more sleeping, a lot of it. The staff felt he was stressed or exhausted from the change in environment. During meals he continued to push the food back and say, "You eat it!"  I jokingly told him it was against the law for me to eat it and a waste of money if he did not eat it. Interestingly he did eat most of his breakfast and lunch went OK, but he did leave some of it. My brother and his wife came out around 4-5pm which provided him a new team of 'encouragement' to work through dinner. They were successful in getting him to eat the dinner and he nodded off (took a nap), but woke up shortly afterwards. For now he has a catheter but Rehab efforts were scheduled to start later today (Friday), maybe a couple short sessions of moving into a wheelchair and a chance to get him on his feet (we hope).  I will have more on the rehab efforts later today, or tonight.

Thursday, June 16, 2011

First Day in Rehab



Well…an ambulance picked Dad up around 8.30am yesterday and transported him to the rehab site. We’re told he slept a good bit of the way, that people his age and with his medical condition often sleep on the drive out. In fact he was asleep when they took in him into the room and he slept most of the afternoon, about 4 hours. Of course Mother was concerned but one nurse said that the drive out usually exhaust patients and that he would probably sleep the rest of the day.

But around 5pm he woke-up and was quite groggy. He did not remember me, for whatever the reason and was a little short-tempered with everyone, except the ‘official’ nurses. Like I always thought elderly people respect doctors and nurses (for the most part) and do what they say, while ignoring family that loves them, it’s a weird thing to consider but that’s people.    My brother and his wife came out and after some time me and mother left (around 9pm), looking for some food. After a salad and some talking, mostly about Dad, I convinced her to go sleep.

After watching him for 2 days it is obvious that what was told me on the phone is true. He has lost coordination in his legs and hands, but they say the last test showed no stroke has taken place (that was a couple weeks ago). Someone has to feed him and he doesn't want it. Maybe he is not eating even when Mother, my brother or sister-in-law tries because it's hard for him to eat and he cannot do it himself. Hopefully this is something he will re-learn soon.


6/16 (early morning) I forgot to post this last night. 

Tuesday, June 14, 2011

Rehab Site Update

The rehab site was really nice, sort of like an elders’ spa without the golf and tennis connections. There is a nice cafeteria for people to eat in (there are some people living there permanently, they must have nice retirement plans, or some type of government support). The place is superbly clean, the nurses and other caregivers treat resident patients with care and understanding, and even the support staff of housekeeping and electricians seem to work with no complaints, at least in front of me and my mother.

Dad will be transported by some form of ambulance in the morning, and taken to his room once he gets there. We were told his roommate is a man who has lived there for 8 years, 2 years of that time his wife was his roommate. She passed away 6 years ago and he has remained. All we are required to provide is 3 sets of clothes, including one pair of shoes or socks with the grippe contacts on the bottom. While being admitted my mother was told she could wash his clothes or the site would, no charge. Mother said she would take care of it but I stopped that, she’s done that on other hospital type visits and forgotten something only to find that she has to return home and get it right-away.

Breakfast in his room is at 9am, lunch around noon-1pm, and dinner at 5pm… The girl mentioned that if he is able to make it to the cafeteria the food service starts the hour prior. So, Dad will be picked-up in the morning at the house, we’ll all go out there, and see how it goes.

So, for now that’s all I know. More to learn tomorrow.


6/14

Rehab Site Visit

UPDATE: After getting up this morning and watching Mother administer Dad's medication regiment we got dressed and are headed out to the rehab center. A friend of the family has come over to sit with him while we travel to the site. The doctor who recommended the rehab made it clear this site is not a ‘nursing home’ where people go to sit, but rather it is a 5-star type of site that is ‘acclaimed’ to be very successful. Let’s hope it works that well for dad too. The travel time is about 25 minutes, so we should have everything completed today.  I will post an update later this evening with what I have learned.

6/14 

Travel Complete

After traveling all night Sunday I got into town around 5.30am Monday morning (6/13), stopped for a bite to eat then fell asleep in-front of my parent's house for a couple hours (I didn't want to wake them up). When I woke up it was about 9am so I knocked on the door and my mother opened it with a big surprised look on her face, I’d not mentioned what my plans were so she should have been surprised. I called them Sunday evening while driving but since I was on my cell (they are quite used to me using it) my mother had no idea I was on the road and headed her way. My dad was in the bed, looked a little blotted in the face and his hair has started to grow back in. It was only a week or so back that Mother mentioned he had lost his hair and clipped off any that was left, and that it was coming back in curly. I’ve been told many times Dad and his brothers have curly hair but it’s never looked that way to me; anyway his hair is light white/gray, short, and soft. I touched it and rubbed his head, he just grinned.

Thinking about it I’m not sure he recognized me but he acted like I was someone familiar. It’s a sad day to see him look this way, to know he’s given it a great effort to this point and that this is what cancer has left. A broken man, one who has always been strong, strong-willed and hard-headed; a man who could take care of himself but is now faced with doctors and nurses to sustain him, drugs to improve him (and knock him down) and a family to love him when exhausted and under duress.

Love is everywhere but the eyes tell me a lot. This is not a battle which can be won, it only can be postponed. Concerns are now mounting as to whether the complications, pain & sickness of chemo are worse than the disease. The last 2 doses dad received where a new concoction in an effort to change up and find a more effective drug to assist in the fight against the lung cancer and the growth in his abdomen (it’s not known if this is cancer, doing a biopsy is not an option). So the idea is to administer chemo to fight both, along with a couple small-small ‘flakes’ that were spotted in his chest area (unidentified also).

After some chatting I unloaded my things, pressed some shirts for the week, hung-up my pants, positioned socks, etc… in a drawer and fell on a bed for about 4 hours of sleep.  After a shower I went out for some of my favorite hometown food, then came back to visit and for more sleep.

Later today Mother and I will be going out to the rehab center to do paperwork and get him admitted; I’ll update you if something happens, or later today when we’ve completed some things.

Sunday, June 12, 2011

Headed-Home 6/12/11

My dad stayed in the hospital until May 27th; things improved health-wise in relation to the cellulites and he was discharged. But over the past couple weeks his strength and coordination have not improved; he does not sit-up in the bed, can’t lift his legs very well, and from what I understand part of the issue is that he seems to have a cloudy cognitive status. He is not cooperating with the family when they try to help him and when they have their back turned or doing something in the next room he tries to get out of bed without assistance though it’s been explained many times that he can be hurt.  He will be admitted to a rehab center in the next day or so.


So, I’m headed out now and will travel to see him. It is a long drive, about 12 hours which means I will probably arrive sometime in the early morning; I definitely will be drinking some coffee during my travel. I just packed-up and loaded the car, fueled-up and had lunch. If anything happens while driving I will post from my mobile.

Once I arrive in the morning my plan is to evaluate the situation and post before I fall asleep.

Sunday, May 22, 2011

Me, 12-days-old

I snapped this photo copy of my Dad holding me when I was 12-days old. I know its not very clear, I will get a good copy of it and repost soon.

Saturday, May 21, 2011

BLOOD PROBLEMS

This has been a challenging week for my dad and family. Once he received the wrong antibiotic last weekend things have gotten worse. He has developed cellulites on a leg which rendered him almost immobile before coming to the hospital. Once he arrived at the hospital it was quickly decided that he should not leave the bed without assistance, which has made it hard for my mother since she is 5’4” tall and he is around 6’2”. When a man of that stature cannot stand on his own a lady that small does not stand a chance.  

Along with this difficulty he experienced blood problems, a white blood cell count of 800, compared with the normal range of 4,000-10,000 and a platelet count went below 100,000 (normal range is 150,000-450,000. This week alone he has received 2 pints of whole blood and 4 applications of platelets. The doctor said his blood is looking better now, I laughed and said, “Of course it is, it’s someone else’s blood!!”

Blood wise he is doing better, strength wise he is not! Along with this he is acting sort of ‘out of it’ for the lack of a medical term. When he was asked a serious of cognitive review questions Friday he was unable to identify that he was in a hospital, the date, and once he did not identify my mother. Of course this upset her and everyone else in the family but we have to keep in mind that he had a kidney removed a couple years ago which makes the filtering of his blood take much longer than the regular timeframe. Everyone understands it will take longer to filter drugs from his blood, but right now the drugs need to be used, and remove later (but it does not make it any better).

Of course Mother is doing more than anyone should have to do, but she does it (and all the others before her did, and all those that follow her will do it too). This week she has stayed every night at the hospital with Dad and parts of several days. Simple math reveals that she is sleeping less-and-less and becoming less effective at dealing with the situation. Family members stay with him the time she is not there and she returns, but he continues to request that she stay with him at night.  

Friday the clinical team realized he had some higher volume of fluid in his bladder; the next step, a catheter. When I was told this happened I expected the next sentence would be all about his struggling and uneasiness, but instead the nursing team noticed he turned into a more comfortable patient and became a little more cooperative. This completely surprised me but at midnight (about 1hour before writing this post) he was asleep, talked in his sleep while I was on the phone and kept sleeping. Blessing are few and far between, but appreciated.

It is now Saturday morning, which leads me to believe he will be in the hospital at least until Monday.

More to follow.

Sunday, May 15, 2011

7 MONTHS LATER

Well, I’ve stayed away from this site as long as I could stand it. Many things have happened but now the happenings seem to be taking the ‘anticipated’ turn. I hate to write ‘anticipated’ for the fear of appearing to myself as a doubter, one who did not have confidence in my dad, mother, the doctors and God. But I’ve always had a fear of things not working out at hoped and since several family members were reading my words on this site I tried to stay away.

But now things are different, but the same for so many cancer patients and their families. Dad has taken the chemo like a trooper, at the hands of clinical personnel who have seen it all, know the path and where it leads. Yes, there are occasional successes and they are welcomed by everyone; families, friends, clinical workers, doctors, and church memberships; you name it, when life is prolonged or the cancer monster is beaten down and life is extended people are excited.

But over in the corner, at the party of life is a group of people who did not experience that warmth, and happiness; that victory. They are the people who lost to the monster that takes most everyone who enter its jaws, the grasps of its clutches. This group’s family member was unable to avoid the talons which pierced the shield of hope, unable to escape the fangs which delivered the poison that devastated prayer and seeded the collective mind of families resulting in doubt and despair.  

After losing, members of this group can’t smile when listening to the winners. This group can’t smile when listening to the ‘new’ cancer families discuss what is happening. They can’t because each story reminds them of their battle, when they were losing the fight and the day when they lost. Some can’t talk about it at all; some can but only in a cautious manner while being careful to avoid the painful memories. There are some who are OK talking about it but I have no idea how much time passed before they reached the point of control. My experience before dad was diagnosed with lung cancer was not a lot, now it’s more. I can’t predict the future but I’m afraid experience is headed my way; the wait might not be long.

Cancer is hell!!! It seems no one experiences it and is the same afterwards.

Here’s the short story.

Over the last 7 months my dad has taken chemo treatments, whatever was assigned he faced it with confidence that his doctors knew what to do, the nurses were the know-it-alls; for him chemo has been like a job and he was always good at his job! Never a follower, always a leader! He has continued to stand-up from the automobile and entered the cancer center using his walker, but recently this changed. He has been drained of energy and slow to move and for the past month he has been greeted by a wheelchair and rolled in, one day he went over for a shot to boost his white blood cell count and the nurse came out and administered it in the auto.

During the past month the southern United States experienced some devastating tornadoes. When the storms came in the first day Dad was at the center for a chemo treatment and everyone was evacuated. The treatment was completed a couple days later. My parents were not in the area with the worst damage but the storms moved through and they were without electricity for 5 days. Lucky for my parents my dad’s brother had a generator and my brother helped get it setup. One day the power came back on, the generator was moved out and the power went out 5 hours later, and was off for 2 more days. 

Also during the past 3 months dad has fallen a couple times. This is bad for anyone but for him it’s extra-bad. It’s hard for him to move about and getting back up on his own is pretty tough. Luckily no bones were broken during any falling event.

Just as he reached the point of being reviewed and the chemo stopped his primary-care physician spotted an enlarged lymph node in his abdomen. He forwarded the findings to Dad’s Oncologist and after reviewing the findings the chemo was not stopped and in fact, a new drugs was started and in a more aggressive manner. This is when things changed.

Immediately after this regiment of drug was started dad started to become more tired, queasy feeling, he lost his appetite and what he did eat was reported as tasting like ‘metal’ or ‘aluminum.’  He lost interested in a lot of most things, now he’s concentrating on not being sick and hurting more. But he still likes to watch his love on television – golf.

Oh yea, and his white cell count dropped. This past week his white count dropped to 800, the normal range is from 4,000-10,000.  This was not good and the sign of a bad infection. So an IV antibiotic was started in the doctor’s office. All this past week he’s been sleepy, tired, and still in a lot of pain. He is again talking about the end, or not continuing the chemo so he will not be sick and has said several times, “Didn’t they say this was suppose to work?”, and “Didn’t they tell me they would manage the pain?” 

Several times he has mentioned that it would be easier, or he would feel better if he stopped the chemo. Of course we all know what will happen if he stops the chemo, but I understand that he does not want to continue being sick from the chemo and the treatments that come along with it. After all, from what I can tell the chemo seems to be slowly killing him.

So, what to do?

Please pull your trays back into the upright and takeoff position. Fasten your seatbelts!  I’ve got one more thing for this post.

This weekend, Saturday to be exact the center was closed for the weekend but Dad was supposed to get another antibiotic injection. So it was scheduled to be administered at his house.  A service titled “Home Care” (I don’t know if it is part of the hospital, cancer center, community outreach) came out to give him the IV antibiotic. No problem, right?

Well the drug administered has a warning which states, “If you have an allergic reaction to amoxicillin do not use the drug.” I guess Home Care missed this note, or didn’t read Dad’s records because the person walked in and immediately administered the antibiotic. Now he is in the hospital with a rash over his entire body.
Some people would scream “LAWSUIT” and maybe that is something to consider. But the most terrible thing is, here’s my dad with a white count dangerously low, skin that has spots all over it which itch like the measles or a skin rash, and cancer.

But all he really wants is to feel better.

Posted 5/15/11

Wednesday, February 16, 2011

MEASURING STICK

My "demon" stranger visited today and caused me to think things that should not have entered my mind. After some contemplation the following exited through my fingers and into the keyboard.

I was thinking about you today,
And all that you’ve done
During your many years of life.

Somehow I found myself thinking
Of what you could have done.

My heart cracked a little when I started to think
How you missed being a leader in a big business
And you missed being a computer whiz too.

I thought of how you were never a writer or poet
And never sang in front of large crowds.

It was at that moment I realized I was just thinking about all I’ve done
       and continue to do them even now
But if it wasn’t for you I wouldn’t know how.

You taught me patience and level-headed thinking
You taught me how to respect Mother who together with
      You made me a Man
And you set the example of how I should respect all females
      Along with my fellow man.

You set the example of how to love people when they didn’t love back
And you taught me how to respect them even when I thought I was right.

You set the example of how to take pride in my country and its leaders too,
 Even when they can't get it right and don't know what to do.

You gave me examples of how to count numbers and to talk just right
And you taught me (through many tough lessons) when to stay quiet.

My heart is breaking now because I started by measuring you to me,
And in the end I realized that it was the reverse,

My measuring stick was you just being you.

Posted on 2/16/11

Saturday, February 12, 2011

A GOOD DAY

A small boy was standing in the street as a rumble could be heard somewhere in the city. Looking around from store front to the next he obviously could not determine the source of the sound. Looking down at the ground he saw dirt shifting around his feet and small gravel dancing on top of the soil. His bare feet could feel the rumble growing stronger. He reached down with one hand and touched the ground. 

He screamed, "The earth is moving!" and ran down the street. Oddly he ran toward the sound, not away from it as several other children followed him. 

From around a street corner the children and I could hear a screeching sound. Like a gigantic horn or alarm, the sound continued to screech loudly. Another sound, a distinct rumbling sound joined in and then a new, different rumbling sound, like pounding.

"Boom, Boom, Boom", the sound continued along with the alarming "Screech". The group of children stood still. Only one brave boy looked around the corner. He motioned at the others to join him, but none would move.

Finally he bolted around the corner.

Moments later he ran back around the corner and toward the other children, but now he was laughing. Speaking a language that this author was unable to translate I watched as he smacked another boy on the back and shoved him around the corner. Moments later one of them called out to the others while the laughed. The rest of the group ran around the corner while the sounds grew louder and louder. The rhythmic "Booming" increased in speed. 

A few minutes later I understood what the excitement was about. A parade filled with drums, horns, clowns, clapping people, animals of all types, and elephants blasting their natural 'trumpets' rounded the corner. A celebration of some sort was taking place and the smile on everyone's face told me that it was a special type of celebration. Something had happened, something great, but I did not understand the language so I could only watch.

But as a group of jugglers which looked like a family passed I could not help but smile too. Some men came by patting me on the back and laughing, I joined in the laughter.

Children ran past me and then jutted directly in front of the elephants, laughing and pushing one another. The men driving the elephants laughed at the small children and clapped with the beat of the music as it continued to "Boom-Boom!" It was a merry time!

I was not even involved in the celebration; I did not even know what it was about. As the elephants passed by, along with the drums and horns, I noticed some people crying while they laughed. I asked an elderly gentleman what it was all about. He looked up at me and said something about it being sad, but joyous, miraculous and heavenly. Then he walked on down the street with the parade.

I sat on a bench while the last of the parade drifted away and I just smiled. I was happy for something miraculous that had happened but I did not know the people or exactly what had happened.  

A few minutes later while sitting on the bench a young lady sat down and said, "Hello." I thought to myself, 'I understood her' so I asked her what had happened. 

She looked at me and said, "It is a really special day. The old Bryant man had a test and the doctor told him the cancer had shrunk, that in less than 6 months something special had happened, that it was better."

I looked at her and said, "That is great!"

She went on to tell me that at first the Bryant man had considered not using chemo-therapy but after hearing that he would be dead in 6-8 months he had decided to go-through with the treatments. The result was this happy day!

***
This is how my heart felt when I spoke with my dad and mother last night and received the good news. It was like a parade of good news was passing by. We are excited but still cautious, the cancer is not gone but it is smaller and less deadly at this moment. 

We will continue to be prayerful and diligent.


Thursday, February 10, 2011

Monumental Day - 02/10/11

Well, another monumental day is arriving for Dad. Before the end of 2010 the doctor did a scan of some sort and determined that the cancer had been reduced. I made note of that in another blog post, along with the fact that my parents didn’t want to know how much it had been reduced. Well, he has reached another measuring point. 

A few days ago a CAT scan was done, a full body scan was done, so that the size can be reviewed again and several of us are thinking the doctor is reviewing dad’s body to see if it has spread. This has Mom worried and of course Dad too. He is always a little anxious, has been for years, and she is just worried. I’ve always wondered how families can take it while they wait for an appointment with a doctor to test for cancer, or while waiting for test results to come back.

Tomorrow he gets the results from the scan. 

I know a man that reads the tests and gives the news as to whether a person has developed cancer. He has shared many times the weight he feels on his shoulders when he reads the scans. I’ve seen him cry just talking about it and trying to explain.

I talked to my parents tonight, just a ‘checking-in’ phone call; anxiety is evident and worries are cramming into their minds.

Mother and I talked for a few minutes and then she put dad on the line. We talked about the weather, with all the snow this winter how, how can we not. It was only a few weeks ago that he was snowed in and unable t o make a treatment and some tests. Then we discussed the tests. It is worried and I can understand.

Shortly after talking to dad he went to bed and mother was left up by herself, I am guessing to worry, pray, worry a little more. I tried my logical thoughts, which I did not expect would help but she expects me to do my Mr. Spock. You know, “Why are you worrying tonight? It will not change anything.”  But this time I just did it half-heartedly, because now I know that there is a reason to worry, or at least be concerned.

So, we are waiting for tomorrow and what God holds for us. I will report back once we hear and I can post.

Thursday, February 3, 2011

Doubts and Concerns - 02/03/11

I was advised to take a little break from this blog, that the intense feelings after the diagnoses and the events that followed were not the best to work through publicly. So, I’ve taken a little time away from this blog and am back to share. I am not sure that the writing will be any different, I am myself, but I may be more selective as to what I include; time will tell.

So, what is going on?  Dad has been going in for his chemo treatments. Three weeks on, then 1 week off for labs. He continues to share his food treats with the people in the center and during the holidays he mentioned that several people brought treats of their own. Maybe it was just the Christmas spirit of sharing and eating different treats, or maybe some people were feeling more open and talkative. Accepting change is not easy but once people open-up sharing and being friendly becomes contagious.

Four weeks ago Dad fell while trying to get out of the bed. His bed would probably be considered an antique (they’ve had it long before I was born). So, its low to the ground and when he gets out of it his legs have to push to straighten up and stand. I mentioned this difficulty and the danger of him standing up to my mother when I was home for Thanksgiving. What I was most scared of was that he would not be able to stand up and would instead fall, hit his head on the dresser, or break a leg or arm. Mother told me to not bring this up to him, that he had seen it before and that a hospital bed coming into the house would probably be considered a ‘mark of death’, similar to Hospice coming out to help a dying person. For my non-U.S. readers hospice is a medical service that is prescribed for a person who is considered to be in the latter stages of death.  Hospice personnel visit the patient and manage them, which is considered by many to be more human, or humane; Death with dignity.

Mother found him sitting in the floor, sort of dumbfounded. When describing it she mentioned he didn’t recall what happened and didn’t call her for help. It was as-if the shock of falling just got the best of him (my stranger will allow me to consider this one for awhile). It took some effort but she got him up and on to the bed. That’s when Mother noticed the bruises had already started to show, from his shoulder blades to a spot below his buttock.  Of course he didn’t want to report this to his doctor and it was not mentioned. But 2 weeks later he fell a second time while he was out on the porch that I wrote about in another blog post. The second time he fell against some bushes which saved him from hitting the ground and possibly his head on the sidewalk. God works with small miracles many times. 

When mother told me about this my visitor stuck his head in the room and told me, “This is the end”, but I was able to ignore him. It could be signs of him losing his mobility, but that happens with many elderly people.

He had a PET scan to measure the density and size of the cancer, measurements which can be used to determine the effectiveness of the chemotherapy. My mother reported to me that the cancer had shrunk but neither asked the doctor how much it had been reduced.  After asking several more questions I came to the conclusion they did not want to discover it had only shrunk a little bit, instead this way they could hold on to hope that it had been significant.

One last comment to bring this blog up-to-date (sort-of); Dad will have another scan this coming week to measure for reduction in the size of the tumor. We are praying for success but the demon visitor has come to him and raised much fear and concern. Dad mentioned to me, “What if it didn't shrunk enough?”  “What if it’s still the same size?”

I will post on a more regular schedule, the demon has returned and causing doubt and worry to enter the story.

Wednesday, February 2, 2011

THE DEMON IS BACK!!! - 02/02/11

The demon is back!!!

He has visited, stirred my heart with a cold breath and I am writing again. 

Today is my birthday, don’t worry about how old. Things started well; I woke up and everything worked (meaning arms, legs, organs), I got dressed and drove to work. While on the way my automobile did not stop or breakdown, I was not in a wreck and no police officers stopped me for anything (not that I was doing anything wrong). I got to work and led a weekly meeting that I host; everyone seemed to have their work in order and ready for their presentations. I approved everyone’s work and we all left happy (at least I was, I did not take a survey of the others). I got back to my office and did some work and responded to a ton of Facebook “Happy Birthday” wishes. My people had a lunch for me; salad, chicken, rice, guacamole and spinach dip with chips, some cake and my favorite, “Diet Pepsi.” Things were good; I’ll be going out this evening for a little birthday dinner and then home to tweet, twit, write and Facebook some of my friends.

Things were good.  Then my cell phone rang with my parents’ number displayed.

My mother started talking, wishing me “Happy Birthday”, and remembering when the day came and what she was doing hours before I was born; the best I can remember she does this every year. When I was younger I did not listen to her as close as I should have, but as I got into my 20s I realized that this was important to her and each year it took on more significance as the lady who birthed me, and helped raise me talked about her special day.   

She talked with me a minute this after, I was at work and neither parent wants to stay on the phone long. Then she said, “Here’s Daddy.” He came on the phone and started singing “Happy “Birthday.”  His voice was a little gravely and I immediately broke into tears. He didn’t know (I don’t think) and I jumped up and slammed my office door. I have an open door policy so I’m not sure if anyone noticed. He finished the song and told me he loved me, but that he didn’t want to stay on the phone and interrupt my work.

Will my stranger never leave me alone? Will I always be tormented by this demon, even before mine or my Dad’s death?  My eyes are pools of tears now. They are not running down my face but they are ready to overflow my lower lids, my throat and chin are quivering.

What HELL have I been cast into with the diagnosis of Cancer and prognosis of Death?

Will it remain this way for the rest of my life to always feel this way when Dad is in my thoughts?

Will I have a double-dose of HELL when my mother passes away?


** I have a couple updates that precede this post, I will write them up and try to post one or more this evening after a birthday party, but I just had to write this now.