I always thought that I was pretty tough when it came to handling all the cancer drugs and their harsh side-effects. I know the nurses often seemed surprised how strong and energetic I was. I'll always remember the specialist at the University of Pennsylvania walking into the room and being taken aback before saying, "Wow. You look really good."
It hasn't been easy. But I have worked hard.
Until Friday, I had enough. I slept almost all day long everyday. I felt like I was just curled up in a ball on the floor. Ironically, the drug that got the best of me was a drug meant to boost the immune system and not a chemotherapy.
I expected a drug meant to boost my immune system to make me feel good, make me feel strong. Ugh, that's not the case at all. The more I learned about Interferon the more I learned how difficult it is to handle.
After not being able to attend Thanksgiving with my family, after not being able to visit with my cousin Lynn from Florida, after getting tired of living life as one constant nap, I skipped the planned Interferon injection on Friday.
Last time I saw my oncologist one thing we discussed was taking a "drug holiday." On Friday morning I called the hospital and let them know that I wouldn't be coming in today. This morning I'm going to leave a message with my oncologist letting him know what I've decided. Then I will leave a message with the chemotherapy nurses as well.
I can't say that everything feels better after being off Interferon Thursday, Friday, Saturday and Sunday. But I am going to be working hard to try to get back to speed. I've lost 20-pounds and have become very weak, and I want to start turning that around. It actually feels like some of these drugs make metabolic changes to your body. They change things. And it's not just going to take a day or two for all of these things to just change back.
How long does it take to work the effects of over three-years of continuous chemo out of your body?
Am I setting new records?
They did tell me in radiation that I now hold the record for most Gamma Knife radiation treatments.
Ugh. What a record.
Monday, November 30, 2009
Saturday, November 28, 2009
Sick of Being Sick
The smoke cleared from one crazy Thanksgiving and we all eased into Friday morning with care.
Simba, Alyssa and Charlie's kitten, was put to its final resting place among much sorrow.
My Dad was back in Spang Crest on his new blood thinner medications and reportedly still with an irregular pulse, but feeling and acting very strong.
My Mom woke up quite stiff and sore from her fall. I tried to warn her. Take it from someone who has taken plenty of spills and falls, it's the next couple days when you feel everything.
I woke up feeling terrible once again. The drug Interferon was driving me into the ground. I made a big decision to take a "drug holiday." Instead of going to the health campus for my injection I called and told them I wouldn't be coming today.
Last time I met with my oncologist he suggested the idea of a "drug holiday." I told him that I wanted to pursue the Interferon until the end of his planned cycle (which is the end of December) then have a CT scan to see if it was doing anything or not. Depending on the results of the scan we would continue with Interferon or switch to a new drug that was just recently released.
Interferon is a drug that supposedly has been around for sometime and used for many different cancers. Any time I would mention it to nurses at the cancer center they would scrunch up their face and ask me how I was doing it. They knew all about how rough it can be.
According to the nurses they have one other patient on Interferon, and according to the nurses she comes in every day for an IV and then goes home right to sleep until the next morning when she does it again.
I was starting to feel this way. I became so constantly tired, so weak, aches all over my body. When I folded a blanket on the bed every morning it felt like the heaviest weight in the world.
My digestion became terrible. I had a stomach ache every day. I lost 20-pounds.
Because of Interferon I missed Thanksgiving and a visit with my cousin from Florida.
I've had enough for now. It's time for a holiday. I need some time to try to regain strength before putting my body through more.
For now, all I've decided firmly upon is taking off yesterday. Barb and I are discussing what makes sense into the weeks to come.
I don't think that there will be much benefit from a one-day holiday from the drug. I meet with my oncologist again on December 10. So we're thinking it might make the most sense to stay away from the drug until we meet with the doc again and then take things from there.
Obviously missing Friday's injection alone won't just make everything better. These drugs change your whole metabolism. It will take awhile for me to build up my strength again.
I've always been somewhat proud about how I've been able to stand-up to all of these harsh drugs. They finally found one to really pound me.
Simba, Alyssa and Charlie's kitten, was put to its final resting place among much sorrow.
My Dad was back in Spang Crest on his new blood thinner medications and reportedly still with an irregular pulse, but feeling and acting very strong.
My Mom woke up quite stiff and sore from her fall. I tried to warn her. Take it from someone who has taken plenty of spills and falls, it's the next couple days when you feel everything.
I woke up feeling terrible once again. The drug Interferon was driving me into the ground. I made a big decision to take a "drug holiday." Instead of going to the health campus for my injection I called and told them I wouldn't be coming today.
Last time I met with my oncologist he suggested the idea of a "drug holiday." I told him that I wanted to pursue the Interferon until the end of his planned cycle (which is the end of December) then have a CT scan to see if it was doing anything or not. Depending on the results of the scan we would continue with Interferon or switch to a new drug that was just recently released.
Interferon is a drug that supposedly has been around for sometime and used for many different cancers. Any time I would mention it to nurses at the cancer center they would scrunch up their face and ask me how I was doing it. They knew all about how rough it can be.
According to the nurses they have one other patient on Interferon, and according to the nurses she comes in every day for an IV and then goes home right to sleep until the next morning when she does it again.
I was starting to feel this way. I became so constantly tired, so weak, aches all over my body. When I folded a blanket on the bed every morning it felt like the heaviest weight in the world.
My digestion became terrible. I had a stomach ache every day. I lost 20-pounds.
Because of Interferon I missed Thanksgiving and a visit with my cousin from Florida.
I've had enough for now. It's time for a holiday. I need some time to try to regain strength before putting my body through more.
For now, all I've decided firmly upon is taking off yesterday. Barb and I are discussing what makes sense into the weeks to come.
I don't think that there will be much benefit from a one-day holiday from the drug. I meet with my oncologist again on December 10. So we're thinking it might make the most sense to stay away from the drug until we meet with the doc again and then take things from there.
Obviously missing Friday's injection alone won't just make everything better. These drugs change your whole metabolism. It will take awhile for me to build up my strength again.
I've always been somewhat proud about how I've been able to stand-up to all of these harsh drugs. They finally found one to really pound me.
Friday, November 27, 2009
What a Day
I tell people that I never know what kind of day I'm in for until I wake up in the morning. I could tell yesterday from the moment I woke up that I was in for a bad day. I felt terrible. But I had no idea what I was in store for.
I did make the very difficult decision to stay at home for the day. Barb's parents were going to drive us to Myerstown where we were to enjoy a Thanksgiving meal together. But I felt so lousy I just couldn't imagine it. Everything hurt, everything ached, I felt weak all over and generally just felt out of it. I just wanted to go back to sleep.
It was a choice of being a total zombie surrounded by the comforts of home, or being a total zombie in Myerstown while trying to interact with others. I couldn't imagine interacting with anyone.
But this was only the beginning.
At 7:30 a.m. the phone rang. I soon heard my wife getting upset. I asked her what was wrong. It was Alyssa. Her kitten had passed away over night. She loved that kitty. Alyssa is a very sensitive gal and loves animals. Simba had developed a condition that built fluid up around his organs. The vet still doesn't know exactly what caused it even with the help of tests.
As anyone who has had pets would understand, it was tough on Alyssa. And with Alyssa being so close to our hearts, it was tough on us too.
Is that it? Nope.
My brother called after lunch to let us know that my Mom had fallen when Noel got under her feet. She hit her head. The gang had to take her to the hospital where she received four staples to close a cut. I spoke with her last evening and she's doing well and laughing about it. But she still might have been a little numb. I'm guessing she may be feeling a little more pain this morning.
We also learned yesterday that my Dad's recent issues have been caused by a clot in his lung. He has been prescribed a blood thinner. From measuring my Mom's reaction to all of this, there seems to be some strong sentiment that the blood thinner will do the job on the clot just fine.
I never felt very strong all day yesterday. My day included both a morning and an afternoon nap. Not even Freckles wanted to join me. Maybe I was snoring, although that never seemed to bother him before. Afterall, he's quite a snoring creature himself.
My stomach was rough all day and I really didn't eat much more than a couple of pretzels. For dinner Barb pulled together a couple of our homemade cheese steaks. So we had Thanksgiving Day cheese steaks for dinner. They were delicious.
This morning already seems like I'm into a more energetic day. But it is another day for my Interferon injection...so...we'll see...
What a Thanksgiving! Our we ready for our own reality TV show?
I did make the very difficult decision to stay at home for the day. Barb's parents were going to drive us to Myerstown where we were to enjoy a Thanksgiving meal together. But I felt so lousy I just couldn't imagine it. Everything hurt, everything ached, I felt weak all over and generally just felt out of it. I just wanted to go back to sleep.
It was a choice of being a total zombie surrounded by the comforts of home, or being a total zombie in Myerstown while trying to interact with others. I couldn't imagine interacting with anyone.
But this was only the beginning.
At 7:30 a.m. the phone rang. I soon heard my wife getting upset. I asked her what was wrong. It was Alyssa. Her kitten had passed away over night. She loved that kitty. Alyssa is a very sensitive gal and loves animals. Simba had developed a condition that built fluid up around his organs. The vet still doesn't know exactly what caused it even with the help of tests.
As anyone who has had pets would understand, it was tough on Alyssa. And with Alyssa being so close to our hearts, it was tough on us too.
Is that it? Nope.
My brother called after lunch to let us know that my Mom had fallen when Noel got under her feet. She hit her head. The gang had to take her to the hospital where she received four staples to close a cut. I spoke with her last evening and she's doing well and laughing about it. But she still might have been a little numb. I'm guessing she may be feeling a little more pain this morning.
We also learned yesterday that my Dad's recent issues have been caused by a clot in his lung. He has been prescribed a blood thinner. From measuring my Mom's reaction to all of this, there seems to be some strong sentiment that the blood thinner will do the job on the clot just fine.
I never felt very strong all day yesterday. My day included both a morning and an afternoon nap. Not even Freckles wanted to join me. Maybe I was snoring, although that never seemed to bother him before. Afterall, he's quite a snoring creature himself.
My stomach was rough all day and I really didn't eat much more than a couple of pretzels. For dinner Barb pulled together a couple of our homemade cheese steaks. So we had Thanksgiving Day cheese steaks for dinner. They were delicious.
This morning already seems like I'm into a more energetic day. But it is another day for my Interferon injection...so...we'll see...
What a Thanksgiving! Our we ready for our own reality TV show?
Thursday, November 26, 2009
Wednesday, November 25, 2009
Results Day
We're expectiing results today on the fluid that was taken off my Dad's right lung on Monday. We're hopeful, of course, and keeping our fingers crossed.
One thing that has really confused me is how, just now, they've said that my Dad's ribs are still cracked from his fall earlier this year. It doesn't seem possible that his ribs could still be broken over these many, many months. Plus it has me wondering how this couldn't have been noticed with follow-ups for the initial treatment.
I can't help but think that the cracked ribs and the fluid have something to do with one another. Hopefully we'll find out everything today.
Barb and I's hearts were with Alyssa and Charlie yesterday. They're kitten, Simba, still less than one-year-old had not been himself the last few weeks. A trip to the vet revealed that Simba had fluid through his mid-section. The diagnosis from the vet was not good. The vet suggested putting him to sleep. He also warned that this rare disease was also likely contagious and would affect their other kitten.
Alyssa would not accept just putting Simba to sleep. She convinced the vet to extract some fluid and run some tests. The vet did.
How ironic...my Dad and Simba both having fluid extracted and tested with results due tomorrow.
The vet apparently called Alyssa last night and informed her that early tests were negative. Then he called back later and said that he never saw a cat bouncing back so well.
Our thoughts have been with little Simba all night, and Alyssa and Charlie of course.
Our thoughts have also been with my Dad and Mom has they await his test results. We'd, of course, like nothing more than to see him home for Thanksgiving.
One thing that has really confused me is how, just now, they've said that my Dad's ribs are still cracked from his fall earlier this year. It doesn't seem possible that his ribs could still be broken over these many, many months. Plus it has me wondering how this couldn't have been noticed with follow-ups for the initial treatment.
I can't help but think that the cracked ribs and the fluid have something to do with one another. Hopefully we'll find out everything today.
Barb and I's hearts were with Alyssa and Charlie yesterday. They're kitten, Simba, still less than one-year-old had not been himself the last few weeks. A trip to the vet revealed that Simba had fluid through his mid-section. The diagnosis from the vet was not good. The vet suggested putting him to sleep. He also warned that this rare disease was also likely contagious and would affect their other kitten.
Alyssa would not accept just putting Simba to sleep. She convinced the vet to extract some fluid and run some tests. The vet did.
How ironic...my Dad and Simba both having fluid extracted and tested with results due tomorrow.
The vet apparently called Alyssa last night and informed her that early tests were negative. Then he called back later and said that he never saw a cat bouncing back so well.
Our thoughts have been with little Simba all night, and Alyssa and Charlie of course.
Our thoughts have also been with my Dad and Mom has they await his test results. We'd, of course, like nothing more than to see him home for Thanksgiving.
Tuesday, November 24, 2009
Sounds Good and Bad, Mostly Good
Barb and I were beat last night and went to bed a little early. I only made it until about 9:30 p.m. and then I was up for the rest of the night.
I could tell that I was having one of those "Interferon nights," where the medicine creates chills, and small headaches, and the brain just can't relax and sleep.
Someone warn Freckles, I'm bound for a nap or two today for sure.
I did talk to my Mom last night about my Dad's procedure on Monday. They pulled two-quarts of fluid off the lining of his right lung, and they said that his lung reflated. They did add though that there was blood in the fluid taken away from his lung.
Having his lung reflate is very good news. Hearing about blood is never good news.
They are testing the fluid to determine what it is and where it is coming from. They expect results by Wednesday.
After he was released from the out-patient procedure, my Mom took my Dad to lunch where she said he had a great appetite. Then they both visited the house on the hill and relaxed. When I called to check on things I was surprised and pleased to be able to talk to my Dad a bit.
There's two big phone talkers there! lol But we did have a good conversation and he did sound quite well.
He was due to return to Spang Crest last evening.
I'm due for a nap.
I could tell that I was having one of those "Interferon nights," where the medicine creates chills, and small headaches, and the brain just can't relax and sleep.
Someone warn Freckles, I'm bound for a nap or two today for sure.
I did talk to my Mom last night about my Dad's procedure on Monday. They pulled two-quarts of fluid off the lining of his right lung, and they said that his lung reflated. They did add though that there was blood in the fluid taken away from his lung.
Having his lung reflate is very good news. Hearing about blood is never good news.
They are testing the fluid to determine what it is and where it is coming from. They expect results by Wednesday.
After he was released from the out-patient procedure, my Mom took my Dad to lunch where she said he had a great appetite. Then they both visited the house on the hill and relaxed. When I called to check on things I was surprised and pleased to be able to talk to my Dad a bit.
There's two big phone talkers there! lol But we did have a good conversation and he did sound quite well.
He was due to return to Spang Crest last evening.
I'm due for a nap.
Monday, November 23, 2009
So Thankful
It's so difficult in this day and age when everyone is so constantly busy to get the whole family together. Yesterday we were able to join Barb's family at Jay and Debbie's (her sister and brother-in-law) house to celebrate an early Thanksgiving.
It was great - great family, great friends, great food. I feel very thankful.
We even had a couple screaming kids, one of which colored me a picture from a "Thomas the Train" coloring book. lol
Besides having mashed potatoes, filling and gravy all on the same plate at once, I think my favorite moment was watching Barb's Dad chase the kids around the house. They all had such big smiles! And yes, that does include Barb's Dad Bill.
Barb and I owe a big thank you to Alyssa and Charlie for coming all the way over here to pick us up, and for also returning us home. I feel like I keep getting stronger, but it can be very unpredictable for me at times. I always wondered how an infant could fall asleep right in the middle of eating. Now I understand.
A big thank you to Debbie and Jay for hosting all of this and putting up with all of us.
We left with warm bellies, and warm hearts. Thank you!
It was great - great family, great friends, great food. I feel very thankful.
We even had a couple screaming kids, one of which colored me a picture from a "Thomas the Train" coloring book. lol
Besides having mashed potatoes, filling and gravy all on the same plate at once, I think my favorite moment was watching Barb's Dad chase the kids around the house. They all had such big smiles! And yes, that does include Barb's Dad Bill.
Barb and I owe a big thank you to Alyssa and Charlie for coming all the way over here to pick us up, and for also returning us home. I feel like I keep getting stronger, but it can be very unpredictable for me at times. I always wondered how an infant could fall asleep right in the middle of eating. Now I understand.
A big thank you to Debbie and Jay for hosting all of this and putting up with all of us.
We left with warm bellies, and warm hearts. Thank you!
Saturday, November 21, 2009
Falling in Place
I'm trying to find a rhythym to my daily activities that seems to agree with me best. I don't think I'm quite there yet. But I do think I'm getting close.
In the morning I'll typically start with a cup of coffee, the news, and the blog. My body is not really fond of the coffee. But the coffee does get my digestive track going which is very important. As we say around this house I will try to "potty like a rock star" before I move on to anything else.
I'll come back down the stairs and Barb will ask me, "rock star?" I'll answer her appropriately, "Yeah! Ringo Starr!"
Whoever thought we'd be having a conversation like that? lol
After that event I usually blog while sorting out my morning pills and planning some breakfast. I like blogging while my mind is somewhat fresh in the morning, although I'm not sure that my morning brain is always the best for spelling and grammar.
I'll start with a simple multi-vitamin, then move into the steroid, before taking a couple supplements. I try to spread things out a little bit because my stomach is not fond of the feeling of a handful of drugs all sitting in there at the same time.
Just this past week the oncologist prescribed me Prozac, but not for its traditional purpose. The Prozac is supposed to fight the fatique that I have from the Interferon. The Interferon is an immune therapy which is being used against my cancer right now. I have injections of it three times a week.
So far I've taken Prozac the last three days. Thursday was the only day thus far where I actually seemed to feel some positive effects from it. Thursday was also the only day when I didn't have an Interferon injection. So we'll see.
The morning pills and breakfast kind of all rollover into the same event, since some drugs require food to be eaten with them. I often have something like a ham and cheese sandwich, and maybe a doughnut.
After I have some food in me I try to do some simple exercises, most stretching. It's not much but it does seem to help me out of course. Some deep knee bends, some leg stretches, some arm stretches, it's always hard for me to get started. But once I get started I get into it.
Then it's time to jump in the shower. I would think that the shower would wake me up and get me going even more. But nothing ever seems logical in the cancer fight. Often when I get out of a shower I feel like sneaking back to bed for a nap. I don't know why. If I can make it through that first hour after the shower without taking a quick nap with Freckles I can last through lunch with a nice little second wind.
With everyday there is a nap or two somewhere, either mid-morning, or early afternoon, or both. It refreshes me and makes me feel like new, well at least for awhile.
I try to stay busy as much as possible, although much of what I do these days is very simple stuff, like changing a light bulb, or making the salad for dinner last night. It seems like the more friendly activity I get involved in the better my fatique is too.
Of course there is another session of pills around dinner time. It's all pretty much the same, except this time there is no Prozac and I have to take six Dilantin instead. Taking six pills at once is a bit of a burden. But that's the way it has to be.
I'm trying to have the more and more strength everyday to get back involved in preparing dinner. Barb and I have always shared cooking responsibilities. As she has been doing all the cooking lately I think she began to appreciate more and more the nights she had off from cooking before. I've always loved to cook. I'm pretty sure that it's because I love to eat.
Through some odd coincidence the painters that our neighbors hired are showing up at our place this morning to paint a small strip of our house that runs between our house and ours. No on else can see this small strip but our neighbors. Still it is something that has been on my list of things to do.
I better get on schedule of events for the day before they show up and start making some noise.
In the morning I'll typically start with a cup of coffee, the news, and the blog. My body is not really fond of the coffee. But the coffee does get my digestive track going which is very important. As we say around this house I will try to "potty like a rock star" before I move on to anything else.
I'll come back down the stairs and Barb will ask me, "rock star?" I'll answer her appropriately, "Yeah! Ringo Starr!"
Whoever thought we'd be having a conversation like that? lol
After that event I usually blog while sorting out my morning pills and planning some breakfast. I like blogging while my mind is somewhat fresh in the morning, although I'm not sure that my morning brain is always the best for spelling and grammar.
I'll start with a simple multi-vitamin, then move into the steroid, before taking a couple supplements. I try to spread things out a little bit because my stomach is not fond of the feeling of a handful of drugs all sitting in there at the same time.
Just this past week the oncologist prescribed me Prozac, but not for its traditional purpose. The Prozac is supposed to fight the fatique that I have from the Interferon. The Interferon is an immune therapy which is being used against my cancer right now. I have injections of it three times a week.
So far I've taken Prozac the last three days. Thursday was the only day thus far where I actually seemed to feel some positive effects from it. Thursday was also the only day when I didn't have an Interferon injection. So we'll see.
The morning pills and breakfast kind of all rollover into the same event, since some drugs require food to be eaten with them. I often have something like a ham and cheese sandwich, and maybe a doughnut.
After I have some food in me I try to do some simple exercises, most stretching. It's not much but it does seem to help me out of course. Some deep knee bends, some leg stretches, some arm stretches, it's always hard for me to get started. But once I get started I get into it.
Then it's time to jump in the shower. I would think that the shower would wake me up and get me going even more. But nothing ever seems logical in the cancer fight. Often when I get out of a shower I feel like sneaking back to bed for a nap. I don't know why. If I can make it through that first hour after the shower without taking a quick nap with Freckles I can last through lunch with a nice little second wind.
With everyday there is a nap or two somewhere, either mid-morning, or early afternoon, or both. It refreshes me and makes me feel like new, well at least for awhile.
I try to stay busy as much as possible, although much of what I do these days is very simple stuff, like changing a light bulb, or making the salad for dinner last night. It seems like the more friendly activity I get involved in the better my fatique is too.
Of course there is another session of pills around dinner time. It's all pretty much the same, except this time there is no Prozac and I have to take six Dilantin instead. Taking six pills at once is a bit of a burden. But that's the way it has to be.
I'm trying to have the more and more strength everyday to get back involved in preparing dinner. Barb and I have always shared cooking responsibilities. As she has been doing all the cooking lately I think she began to appreciate more and more the nights she had off from cooking before. I've always loved to cook. I'm pretty sure that it's because I love to eat.
Through some odd coincidence the painters that our neighbors hired are showing up at our place this morning to paint a small strip of our house that runs between our house and ours. No on else can see this small strip but our neighbors. Still it is something that has been on my list of things to do.
I better get on schedule of events for the day before they show up and start making some noise.
Friday, November 20, 2009
Power of Prayer
Jesus taught his disciples how to pray -
Our Father, who art in heaven,
Hallowed be thy Name.
Thy kingdom come.
Thy will be done,
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our trespasses,
As we forgive those who trespass against us.
And lead us not into temptation,
But deliver us from evil.
[For thine is the kingdom,
and the power, and the glory,
for ever and ever.]
Amen.
Considering myself a disciple I find myself reciting the Lord's Prayer to myself a couple times a day. I don't really have any set practice of doing so. The mood or "need" just seems to strike me and I find myself in the midst of it.
I must say that it makes me feel stronger, fills me with warmth. It makes me feel closer to God.
Of course one or two other prayers make it into each of my days.
I was given a nice little knick-knack box and on top it says "When you pass through the waters, I will be with you." I see that every day and it fills me with strength and assurance.
I've been told that the Lord hears all prayers. Who am I to question that? I guess He does. There are a lot of things that I'm not meant to understand.
To me, prayers were always a way to get closer to God. Prayers were a bridge, they were a hand out-reached.
I'm not sure how God could hear all of our prayers from the many corners all around the world. I'll tell you He must have one really over-filled i-Phone, and a really big bill.
But I don't expect all of my prayers to be answered. Somehow I know that they are being heard. It is a connection for me, a living, breathing, every day connection to our God. That's all I need.
I don't feel right praying for myself. Oh I do pray for forgiveness. I do pray for times when I'm not even half the man that I should be in God's eyes. But I don't pray for my health, or for a flat-screen TV.
I pray for others, for all those who are so close to me and for those I will never know. I pray for those who know the Lord well and those who have never met Him. I pray for those who are suffering, starving, in-need.
Are all my prayers answered? No. But it doesn't matter. Prayer gives me that special connection to God. They say that communication is the cornerstone to a relationship. Prayer provides me with that special relationship which bonds my faith with the beyond.
It can be a complex issue to really look at deep in our hearts and souls. But Jesus did simplify it for us in the Lord's Prayer that we all recite today. The prayer that I have just recited to myself just now.
Our Father, who art in heaven,
Hallowed be thy Name.
Thy kingdom come.
Thy will be done,
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our trespasses,
As we forgive those who trespass against us.
And lead us not into temptation,
But deliver us from evil.
[For thine is the kingdom,
and the power, and the glory,
for ever and ever.]
Amen.
Considering myself a disciple I find myself reciting the Lord's Prayer to myself a couple times a day. I don't really have any set practice of doing so. The mood or "need" just seems to strike me and I find myself in the midst of it.
I must say that it makes me feel stronger, fills me with warmth. It makes me feel closer to God.
Of course one or two other prayers make it into each of my days.
I was given a nice little knick-knack box and on top it says "When you pass through the waters, I will be with you." I see that every day and it fills me with strength and assurance.
I've been told that the Lord hears all prayers. Who am I to question that? I guess He does. There are a lot of things that I'm not meant to understand.
To me, prayers were always a way to get closer to God. Prayers were a bridge, they were a hand out-reached.
I'm not sure how God could hear all of our prayers from the many corners all around the world. I'll tell you He must have one really over-filled i-Phone, and a really big bill.
But I don't expect all of my prayers to be answered. Somehow I know that they are being heard. It is a connection for me, a living, breathing, every day connection to our God. That's all I need.
I don't feel right praying for myself. Oh I do pray for forgiveness. I do pray for times when I'm not even half the man that I should be in God's eyes. But I don't pray for my health, or for a flat-screen TV.
I pray for others, for all those who are so close to me and for those I will never know. I pray for those who know the Lord well and those who have never met Him. I pray for those who are suffering, starving, in-need.
Are all my prayers answered? No. But it doesn't matter. Prayer gives me that special connection to God. They say that communication is the cornerstone to a relationship. Prayer provides me with that special relationship which bonds my faith with the beyond.
It can be a complex issue to really look at deep in our hearts and souls. But Jesus did simplify it for us in the Lord's Prayer that we all recite today. The prayer that I have just recited to myself just now.
Thursday, November 19, 2009
Powdered Doughnuts
My Dad is scheduled for a procedure on Monday to remove fluid from his lungs. From what I understand he will just need a local anesthesia for this process. As long as his lung does not deflate during the process it should be a relatively simple process.
The doctor and medical team does not know what the fluid is or where it is coming from. Thus in removing the fluid they can sample and test it as well to hopefully determine what is causing it.
According to my Mom she has noticed some moments of my father running a little short on breath. But beyond that he seems like the same guy we know and love.
He's a fighter. He's a tough guy. He's a warrior.
We're hoping that things go very well on Monday so perhaps Dad can join us in Myerstown for the Thanksgiving holiday. But if he can't, we'll be taking the holiday to him.
My Mom often tells me that my Dad often asks about my condition.
It was very strange the day I was diagnosed with cancer. On that same day my Dad had his first small stroke. Plus my good friend had his house foreclosed on, which was before the economic crisis. Man was that a day. Whew.
My condition could be better. I'm not going to lie. I've been through a lot lately and it is taking its toll on me. But as the doctor asked Barb and I during our last meeting, "Are you feeling depressed at all?"
"Him?" Barb answered. "I don't think so."
Depressed? Never. I rest my soul in the Lord's hands who gives me the power to persist through the roughest of waters.
Grouchy? Well sure. When I'm feeling lousy I can't help but feeling a little grouchy. I've found that being a little whiney helps a little so go right ahead and whine.
Barb and her Mom kindly ran out to fill our fridge and pantry up with food yesterday. I've done some driving around town but not much beyond the borders of Marietta recently. My condition can be very unpredictable, but still more often lousy then good. I can be feeling pretty strong one hour, and an hour later be ready to crawl into a corner and just fall asleep.
But some things don't change. I'm still the same goofball I've always been. Barb picked up some of my favorite little fresh baked doughnuts. It only took a couple minutes for me to have a bunch of white powder from a powdered doughnut down the front of me.
Mmmmmmmmm. They's so good!
The doctor and medical team does not know what the fluid is or where it is coming from. Thus in removing the fluid they can sample and test it as well to hopefully determine what is causing it.
According to my Mom she has noticed some moments of my father running a little short on breath. But beyond that he seems like the same guy we know and love.
He's a fighter. He's a tough guy. He's a warrior.
We're hoping that things go very well on Monday so perhaps Dad can join us in Myerstown for the Thanksgiving holiday. But if he can't, we'll be taking the holiday to him.
My Mom often tells me that my Dad often asks about my condition.
It was very strange the day I was diagnosed with cancer. On that same day my Dad had his first small stroke. Plus my good friend had his house foreclosed on, which was before the economic crisis. Man was that a day. Whew.
My condition could be better. I'm not going to lie. I've been through a lot lately and it is taking its toll on me. But as the doctor asked Barb and I during our last meeting, "Are you feeling depressed at all?"
"Him?" Barb answered. "I don't think so."
Depressed? Never. I rest my soul in the Lord's hands who gives me the power to persist through the roughest of waters.
Grouchy? Well sure. When I'm feeling lousy I can't help but feeling a little grouchy. I've found that being a little whiney helps a little so go right ahead and whine.
Barb and her Mom kindly ran out to fill our fridge and pantry up with food yesterday. I've done some driving around town but not much beyond the borders of Marietta recently. My condition can be very unpredictable, but still more often lousy then good. I can be feeling pretty strong one hour, and an hour later be ready to crawl into a corner and just fall asleep.
But some things don't change. I'm still the same goofball I've always been. Barb picked up some of my favorite little fresh baked doughnuts. It only took a couple minutes for me to have a bunch of white powder from a powdered doughnut down the front of me.
Mmmmmmmmm. They's so good!
Tuesday, November 17, 2009
Is It Starting Early?
Maybe I'm just imagining things but it seems like the commercial side of Christmas is starting earlier and earlier every year. Is it possible that we will start seeing Christmas ads around Halloween?
I don't want to glaze over my favorite holiday, Thanksgiving. It's all of the family, all of the friends, all of the food, and none of the presents.
I love giving presents. But I give them for no particular reason. I definitely do not wait for a specific day. Ask Barb, I'm famous for giving out presents for no particular reason at all.
There are way too many holidays. The greeting card companies have introduced as many as we'll accept. There's Sweetest Day, Secretaries Day, Boss's Day. November is bringing us "Word Hello Day," and "Cake Day."
Ugh.
When I was very young I remember asking my Dad when "Kids' Day" was. He laughed hard for a good five-minutes. When he saw that my expression was still serious, he gathered himself and said, "Every day is Kids' Day!"
I don't want to glaze over my favorite holiday, Thanksgiving. It's all of the family, all of the friends, all of the food, and none of the presents.
I love giving presents. But I give them for no particular reason. I definitely do not wait for a specific day. Ask Barb, I'm famous for giving out presents for no particular reason at all.
There are way too many holidays. The greeting card companies have introduced as many as we'll accept. There's Sweetest Day, Secretaries Day, Boss's Day. November is bringing us "Word Hello Day," and "Cake Day."
Ugh.
When I was very young I remember asking my Dad when "Kids' Day" was. He laughed hard for a good five-minutes. When he saw that my expression was still serious, he gathered himself and said, "Every day is Kids' Day!"
Monday, November 16, 2009
Shopper Extraordinaire
This past Spring when we add central air installed in this old house Barb lost some pretty good space in her closet in our master bedroom. A vent had to be run from the attic to the first floor and it was the only logical path.
Since that time Barb has been struggling a bit to find enough storage space for her stuff. The result was a little pile of stuff here, and another little pile there, and another pile over there.
Complaining is easy. Anyone can do that. So I didn't complain. I offered a suggestion. Why don't we look for a dresser for you and set-up next door in the guest room (Alyssa's room)? We agreed, this was a workable solution.
We didn't want to spend too much. But we didn't want something real cheap. We wanted something that fit in with the old style of our house. We looked around. But we weren't having much luck.
Late last week apparently Barb told her Mom, Susan, about our search. That was all she needed to hear - the super shopper was on the case.
Susan can tell stories of her incredibles finds and purchases. The wonderful thing she got at this yard sale. The remarkable stuff she dug up at this garage sale. The deal she found on fresh pears. She's very proud of her ability to find really high quality stuff at really low prices. And she should be proud.
Well as soon as Barb had told her about our search for a dresser it took Susan less than 24-hours to find one. I swear. I don't know how she does it.
It was perfect, in good shape, solid wood, five-drawers. Wow!
Saturday Barb's sister Debbie and Susan delivered the dresser. I immediately tried to help get this piece of furniture from car to second-floor of the house, and I was instantly scolded and told to go sit down. I was not allowed to lift a thing.
I got the handtruck out and tried to offer advice, some good, some not so good. I watched Barb, Susan and Debbie lift that thing up the steps and into the spare room. That thing was not light either.
I knew that Barb could throw the muscle around. But I was surprised how Mom was throwing the muscle around too. I mean Susan must be in her early 40's right?
Well at least now I know where Barb gets it from.
Since that time Barb has been struggling a bit to find enough storage space for her stuff. The result was a little pile of stuff here, and another little pile there, and another pile over there.
Complaining is easy. Anyone can do that. So I didn't complain. I offered a suggestion. Why don't we look for a dresser for you and set-up next door in the guest room (Alyssa's room)? We agreed, this was a workable solution.
We didn't want to spend too much. But we didn't want something real cheap. We wanted something that fit in with the old style of our house. We looked around. But we weren't having much luck.
Late last week apparently Barb told her Mom, Susan, about our search. That was all she needed to hear - the super shopper was on the case.
Susan can tell stories of her incredibles finds and purchases. The wonderful thing she got at this yard sale. The remarkable stuff she dug up at this garage sale. The deal she found on fresh pears. She's very proud of her ability to find really high quality stuff at really low prices. And she should be proud.
Well as soon as Barb had told her about our search for a dresser it took Susan less than 24-hours to find one. I swear. I don't know how she does it.
It was perfect, in good shape, solid wood, five-drawers. Wow!
Saturday Barb's sister Debbie and Susan delivered the dresser. I immediately tried to help get this piece of furniture from car to second-floor of the house, and I was instantly scolded and told to go sit down. I was not allowed to lift a thing.
I got the handtruck out and tried to offer advice, some good, some not so good. I watched Barb, Susan and Debbie lift that thing up the steps and into the spare room. That thing was not light either.
I knew that Barb could throw the muscle around. But I was surprised how Mom was throwing the muscle around too. I mean Susan must be in her early 40's right?
Well at least now I know where Barb gets it from.
Saturday, November 14, 2009
I Didn't See That Coming
When the oncologist told me that he was going to put me on Interferon injections I didn't think much of it.
After all Interferon wasn't even a chemotherapy. It's an immune system booster. It boosts your immune system which then starts to eradicate everything in the body that doesn't belong there - like cancer.
To me, this all sounded like it would make me feel good, make me feel stronger. After all how could a stronger immune system make me feel bad? Plus the Interferon was delivered via an injection three times a week. It wasn't like chemo where I would get hooked up to an IV drip for a couple of hours.
This would be easy.
It's been anything but. I think the side-effects from the Interferon have been rougher on me than any of the four chemos I've been on. It has me feeling really lousy. I ache all over. I have tremendous fatigue and just want to rest all of the time. My digestion is all messed up. It's been a challenge to be sure.
The oncologist has prescribed some other drugs to try to counter the side-effects from the Interferon. We'll fill those prescriptions on Monday and hope that it may help. He pretty much has left it up to me on where I want to go with this. He suggested that perhaps I take a "drug holiday." He also suggested lowering my dose of Interferon. He also said he'd stop it if I choose and just switch to a new drug that just came out.
He is convinced that my body will reject any kidney cancer drugs out there, even the new one, because all the drugs have the same basic make-up. That's why he's so indecisive about it all. He seems much more focused now on trying to make me feel better.
I'm going to at least try to live with the Interferon a little while longer. I started this nasty drug, I'd at least like to try to find out if it has had any consequence. I don't like the idea of getting so beat up over nothing. According to the oncologist the Interferon has a response rate of about 15-percent, not very high in the grand scheme of kidney cancer drugs.
This weekend is going to be about recovery. Come Monday morning I will have to commit to eating, exercising, and taking additional drugs that might help see me through this immune system boosting.
(sigh)
After all Interferon wasn't even a chemotherapy. It's an immune system booster. It boosts your immune system which then starts to eradicate everything in the body that doesn't belong there - like cancer.
To me, this all sounded like it would make me feel good, make me feel stronger. After all how could a stronger immune system make me feel bad? Plus the Interferon was delivered via an injection three times a week. It wasn't like chemo where I would get hooked up to an IV drip for a couple of hours.
This would be easy.
It's been anything but. I think the side-effects from the Interferon have been rougher on me than any of the four chemos I've been on. It has me feeling really lousy. I ache all over. I have tremendous fatigue and just want to rest all of the time. My digestion is all messed up. It's been a challenge to be sure.
The oncologist has prescribed some other drugs to try to counter the side-effects from the Interferon. We'll fill those prescriptions on Monday and hope that it may help. He pretty much has left it up to me on where I want to go with this. He suggested that perhaps I take a "drug holiday." He also suggested lowering my dose of Interferon. He also said he'd stop it if I choose and just switch to a new drug that just came out.
He is convinced that my body will reject any kidney cancer drugs out there, even the new one, because all the drugs have the same basic make-up. That's why he's so indecisive about it all. He seems much more focused now on trying to make me feel better.
I'm going to at least try to live with the Interferon a little while longer. I started this nasty drug, I'd at least like to try to find out if it has had any consequence. I don't like the idea of getting so beat up over nothing. According to the oncologist the Interferon has a response rate of about 15-percent, not very high in the grand scheme of kidney cancer drugs.
This weekend is going to be about recovery. Come Monday morning I will have to commit to eating, exercising, and taking additional drugs that might help see me through this immune system boosting.
(sigh)
Friday, November 13, 2009
Another Face Off
Generally I'm not much of a talker. But on occasions, when necessary, I can talk the talk. There is no question that my oncologist is quite a speaker and I have no doubt that he's addressed meetings of doctors.
Yesterday, we faced off. It was all good. It was all positive, of course. But we both became very interested with the conversation and followed it through. I knew that I needed to secure enough of his attention so that I could get as many answers, as much wealth from his brain, as possible.
Even though Sloan-Kettering recommended one of two kidney cancer drugs, the only two I haven't tried yet, my oncologist is not feeling real strong about the idea. I do understand his point of view. He thinks I have reached a point where any drugs he would give me would hurt me more than help me. I've had chemo for more than three-years! I've had at least five Gamma Knife brain treatments! They've certainly raked me over the coals. I am pretty beat.
But the doc will concede and let me try anything I want. We talked about it. I guess I am basically, right now, kind of my own oncologist.
I told the doc that althugh I understood his point of view, I still felt compelled to fight on, because of my faith, for my wife, my daughter, my families and friends. But I did had that life and cancer was not necessarily always a black and white thing, and solutions sometimes were gray. He agreed.
It was an interesting debate. There was a resident student in attendance. I have a feeling he go a lot more than he ever expected.
So basically we're going to run the current Interferon injections out until early January when we'll do a scan to check to see if the drug has has any effect on the cancer. Depending on the result we'll continue the Interferon or switch to a new, recently released drug.
A big thank you to Alyssa for driving us into the health campus yesterday. It was a raw, cold, just nasty day yesterday. It looks like more of the same today.
Yesterday, we faced off. It was all good. It was all positive, of course. But we both became very interested with the conversation and followed it through. I knew that I needed to secure enough of his attention so that I could get as many answers, as much wealth from his brain, as possible.
Even though Sloan-Kettering recommended one of two kidney cancer drugs, the only two I haven't tried yet, my oncologist is not feeling real strong about the idea. I do understand his point of view. He thinks I have reached a point where any drugs he would give me would hurt me more than help me. I've had chemo for more than three-years! I've had at least five Gamma Knife brain treatments! They've certainly raked me over the coals. I am pretty beat.
But the doc will concede and let me try anything I want. We talked about it. I guess I am basically, right now, kind of my own oncologist.
I told the doc that althugh I understood his point of view, I still felt compelled to fight on, because of my faith, for my wife, my daughter, my families and friends. But I did had that life and cancer was not necessarily always a black and white thing, and solutions sometimes were gray. He agreed.
It was an interesting debate. There was a resident student in attendance. I have a feeling he go a lot more than he ever expected.
So basically we're going to run the current Interferon injections out until early January when we'll do a scan to check to see if the drug has has any effect on the cancer. Depending on the result we'll continue the Interferon or switch to a new, recently released drug.
A big thank you to Alyssa for driving us into the health campus yesterday. It was a raw, cold, just nasty day yesterday. It looks like more of the same today.
Thursday, November 12, 2009
Licking the Wounds
According to the doctors and nurses at Lancaster General radiation/oncology I am setting new records - most Gamma Knife treatments endured by one person. A dubious record to be sure. There was some debate yesterday whether this was my fifth or sixth Gamma Knife.
Whew.
The Gamma Knife has been around for about 10-years or so. But unless you've had personal experience with it you probably don't know that much about it. Basically it's a high-dose of radiation directed to an exact location. It's brain surgery without an incision. It has certainly become the treatment of choice for brain tumors under 2-cm in size.
The treatment is really not that bad, with the exception of one small aspect of it - having the metal frame screwed to your skull in four places to ensure exact positioning while the radiation is delivered.
I'm still not quite getting used to that. I don't think anyone would.
After a nurse starts you on some anxiety and pain drugs, two doctors and another nurse join the party and to a dry fit of the frame on my head. When they're happy with planned positioning they start sticking me with these needles that create numbness. Soon they're screwing the frame into place against my skull before giving me a little warning that they're going to tighten it all up.
I'm not going to lie to you. It's no fun.
As soon as the frame is secure on my skull I'm wheeled off to MRI where I'm given a double dose of dye and a 10-minute scan. The doctors and engineers use this scan to plan my radiation treatment. When they're ready I'm into the Gamma Knife room, laying on the table and having the frame on my head locked into other metal bars for positioning and stability.
Yesterday I had three small tumors, all around two-millimeters, and each required about 15-minutes of radiation.
They never mess around in getting the frame unscrewed from my head, which is appreciated. They'll try to dry up the areas around my head that are bleeding from the screws, and I go home bandaged, bruised, bleeding, still very numb and sore.
Last night I could not feel the back of my head as I slept, which was probably a blessing. From past experience I know that more pain will appear today as the numbness from the drugs continues to subside.
Considering the recent talks I've had with my oncologist here in Lancaster, and the oncologist at Sloan-Kettering in New York, I asked my radiation/oncologist and my nuerosurgeon if I was getting to a point where I might be considered beyond treating.
Surprisingly they both quickly agreed that I was certainly still very treatable. Everything has been caught in a very small stage, the one doctor said, and everything has reacted very well to treatments so far. They were both very positive. I was happily surprised by this answer.
Today is a recovery day, even the shower will be interesting and somewhat painful. But I do have to make sure that I am strong and thoughtful by late-afternoon when I'll meet with my oncologist. I already have quite a laundry list of questions.
Whew.
The Gamma Knife has been around for about 10-years or so. But unless you've had personal experience with it you probably don't know that much about it. Basically it's a high-dose of radiation directed to an exact location. It's brain surgery without an incision. It has certainly become the treatment of choice for brain tumors under 2-cm in size.
The treatment is really not that bad, with the exception of one small aspect of it - having the metal frame screwed to your skull in four places to ensure exact positioning while the radiation is delivered.
I'm still not quite getting used to that. I don't think anyone would.
After a nurse starts you on some anxiety and pain drugs, two doctors and another nurse join the party and to a dry fit of the frame on my head. When they're happy with planned positioning they start sticking me with these needles that create numbness. Soon they're screwing the frame into place against my skull before giving me a little warning that they're going to tighten it all up.
I'm not going to lie to you. It's no fun.
As soon as the frame is secure on my skull I'm wheeled off to MRI where I'm given a double dose of dye and a 10-minute scan. The doctors and engineers use this scan to plan my radiation treatment. When they're ready I'm into the Gamma Knife room, laying on the table and having the frame on my head locked into other metal bars for positioning and stability.
Yesterday I had three small tumors, all around two-millimeters, and each required about 15-minutes of radiation.
They never mess around in getting the frame unscrewed from my head, which is appreciated. They'll try to dry up the areas around my head that are bleeding from the screws, and I go home bandaged, bruised, bleeding, still very numb and sore.
Last night I could not feel the back of my head as I slept, which was probably a blessing. From past experience I know that more pain will appear today as the numbness from the drugs continues to subside.
Considering the recent talks I've had with my oncologist here in Lancaster, and the oncologist at Sloan-Kettering in New York, I asked my radiation/oncologist and my nuerosurgeon if I was getting to a point where I might be considered beyond treating.
Surprisingly they both quickly agreed that I was certainly still very treatable. Everything has been caught in a very small stage, the one doctor said, and everything has reacted very well to treatments so far. They were both very positive. I was happily surprised by this answer.
Today is a recovery day, even the shower will be interesting and somewhat painful. But I do have to make sure that I am strong and thoughtful by late-afternoon when I'll meet with my oncologist. I already have quite a laundry list of questions.
Wednesday, November 11, 2009
Kindness is Contagious
Late last week Susan, Barb and I were at the cancer center for my injection. It was a packed house. We had never seen it so full.
We took the last couple seats besides one odd seat here and one odd seat there. Just then an older couple walked in. Their walking was both a little challenged. She was assisted by a cane. They scoured the full room and decided to stand and prop themselves up against a wall.
I squished into the love seat that Barb and Susan were already sitting on and waved to the couple to join us in the two-open chairs this move made.
The wife noticed my waving and brought her husband's attention to it. But he shook the offer off.
I was a little flustered. I wasn't happy seeing them have to stand. I thought I'd take a different approach. I went to the ladies at the registration desk, who know me well. I wanted to let them know that they had people standing out here and maybe it might help to toss me through my five-minute treatment and just get me out of here.
It turns out that they had an "emergency" in the chemo room and someone had a bad allergic reaction to their chemo. I'm sure my face said it all. This put a new perspective on everything.
On my way back to join Barb and Susan on the love seat (it was cozy) I pulled the two stray seats together, away from the wall, and placed them nicely around a coffee table. Again I tried to wave over the couple that was left standing.
I saw the wife bring attention to the seats again to her husband. He shook them off. He wanted nothing to do with it.
Well I did all I could. I tried. It was a little strange.
Most of my life I probably would have just ignored them, I'm ashamed to say. Obviously I have some company because everyone else in the waiting area was working very hard not to notice any of this, or anyone else for that matter.
Eventually the wife did ditch her stubborn husband and came over to sit down on one of the chairs I made available. She quietly picked up a magazine and kept to herself.
I guess acts of kindness are important whether they're acted upon or not. In the big picture one act of kindness eventually leads to more, by others, by yourself. It becomes contagious, in time.
Yesterday a neighbor stopped by our backdoor and asked if he could rake our leaves for $15. I was struggling to think of a way to get that done. He worked his butt off, did a great job. Barb gave him $25.
We took the last couple seats besides one odd seat here and one odd seat there. Just then an older couple walked in. Their walking was both a little challenged. She was assisted by a cane. They scoured the full room and decided to stand and prop themselves up against a wall.
I squished into the love seat that Barb and Susan were already sitting on and waved to the couple to join us in the two-open chairs this move made.
The wife noticed my waving and brought her husband's attention to it. But he shook the offer off.
I was a little flustered. I wasn't happy seeing them have to stand. I thought I'd take a different approach. I went to the ladies at the registration desk, who know me well. I wanted to let them know that they had people standing out here and maybe it might help to toss me through my five-minute treatment and just get me out of here.
It turns out that they had an "emergency" in the chemo room and someone had a bad allergic reaction to their chemo. I'm sure my face said it all. This put a new perspective on everything.
On my way back to join Barb and Susan on the love seat (it was cozy) I pulled the two stray seats together, away from the wall, and placed them nicely around a coffee table. Again I tried to wave over the couple that was left standing.
I saw the wife bring attention to the seats again to her husband. He shook them off. He wanted nothing to do with it.
Well I did all I could. I tried. It was a little strange.
Most of my life I probably would have just ignored them, I'm ashamed to say. Obviously I have some company because everyone else in the waiting area was working very hard not to notice any of this, or anyone else for that matter.
Eventually the wife did ditch her stubborn husband and came over to sit down on one of the chairs I made available. She quietly picked up a magazine and kept to herself.
I guess acts of kindness are important whether they're acted upon or not. In the big picture one act of kindness eventually leads to more, by others, by yourself. It becomes contagious, in time.
Yesterday a neighbor stopped by our backdoor and asked if he could rake our leaves for $15. I was struggling to think of a way to get that done. He worked his butt off, did a great job. Barb gave him $25.
Tuesday, November 10, 2009
Two Steps Forward, One Step Back
After noticing that my Dad was retaining fluid through his chest and into his ankles, my Dad's doctor ordered a CT scan which showed some fluid on his lungs. Yesterday my Mom was going to follow-up to ensure that an appointment was being made with a pulmonary specialist.
My Mom seems to feel confident that my Dad's issue can be handled with the right medications if they get in there and figure out the cause of the fluid retention. My Mom had my Dad at the house on Saturday and all reports were that it was a very good visit. I can't blame him for a second. It's good to be home.
But as I know all too well, it's often two-steps forward and one-step back when you're on a health-related journey. It can be a roller coaster ride.
I've come to learn that the Interferon that they have me on is certainly named appropriately, "Interfere On" everything. Every night after the injection earlier that day I get intense chills. Then later I get night sweats, small headaches and difficulties sleeping. My digestion becomes all screwed up and eventually I will have strong fatique and aches all over. How's that for well covered?
When my Mom had my Dad at the house, she called me and put my Dad on the line. It was great to hear from him of course, although my Dad and I aren't two of the bigger phone gabbers in the world.
I realized that a lot of the issues my Dad was working with I was working with too. Sometimes the simple routines of life proved a little challenging to keep up with.
Tomorrow I have my fifth Gamma Knife treatment. I'm setting new records there. Even doctors are surprised when they hear that. Ugh. Thursday I'll meet with the oncologist to ensure that the local oncologist and the doc from Sloan-Kettering compared notes. We'll see how it goes.
My Mom seems to feel confident that my Dad's issue can be handled with the right medications if they get in there and figure out the cause of the fluid retention. My Mom had my Dad at the house on Saturday and all reports were that it was a very good visit. I can't blame him for a second. It's good to be home.
But as I know all too well, it's often two-steps forward and one-step back when you're on a health-related journey. It can be a roller coaster ride.
I've come to learn that the Interferon that they have me on is certainly named appropriately, "Interfere On" everything. Every night after the injection earlier that day I get intense chills. Then later I get night sweats, small headaches and difficulties sleeping. My digestion becomes all screwed up and eventually I will have strong fatique and aches all over. How's that for well covered?
When my Mom had my Dad at the house, she called me and put my Dad on the line. It was great to hear from him of course, although my Dad and I aren't two of the bigger phone gabbers in the world.
I realized that a lot of the issues my Dad was working with I was working with too. Sometimes the simple routines of life proved a little challenging to keep up with.
Tomorrow I have my fifth Gamma Knife treatment. I'm setting new records there. Even doctors are surprised when they hear that. Ugh. Thursday I'll meet with the oncologist to ensure that the local oncologist and the doc from Sloan-Kettering compared notes. We'll see how it goes.
Monday, November 9, 2009
Thoughts in Florida
When I was a real little tyke I apparently couldn't say Martha so I just said "Muk," in reference to my Aunt Martha. In our family it stuck and Muk she became and still is to this day.
Muk was always like a second Mom to me. Even though the Putnam family spent much of their lives working in Saudi Arabia, Muk always kept her family ties to Myerstown very close. Muk is very thoughtful, exceptionally kind, with the biggest heart of anyone around.
In college I would receive notices from the post office now and again that I had a package waiting for me. Curious I'd speed down to the post office and find a shoe box sized package wrapped in plain brown packaging paper. It would always be from Muk. It would be a shoe box filled with homemade brownies or banana bread. It was awesome! When you're living on chili dogs and burritos nothing hits the spot so well as a box of Muk's homemade goodness!
I can't tell you how many smiles Muk has brought to so many people just by taking the time to send a simple card. I know from experience that a card from Muk would seem to show up just in time, when I needed a smile most.
I would visit Muk often when her and Rhea had retired to the Eastern Shore of Virginia. She had rules. No man and woman could sleep together unless they were married. Everyone who stayed for a couple days or so had to swim laps in the pool everyday, kids, adults, everyone. A chart on the fridge tracked daily swimming accomplishments. She was great that way.
A teacher in an American school in Saudi Arabia, a golfer, a tennis player, a housewife extraordinaire, Muk will always occupy a huge part in my heart. This weekend she celebrated her 80th birthday with many close family members traveling to Florida to shower HER with cards.
HAPPY BIRTHDAY MUK! Barb and I love you much!
Our thoughts are also with Lou and Doris in Florida this week. Lou is preparing for shoulder surgery. Lou and Doris are also very special, unique people. Doris's heart is as big as the day is long. And Lou? Well how many people do you know who stop their bride halfway down the aisle to sing to them? Lou is that kind of special.
I have no doubt that Lou will pull through the surgery well. He's a tough guy. But I also know he's a typical stubborn male gorilla like me, so I ask him to practice patience with his recovery time. It's something I have to be reminded of myself quite often.
Oh, and to all our friends and family in Florida...it's 41-degrees up here and I'm extremely jealous!!! lol (pouty lip)
Muk was always like a second Mom to me. Even though the Putnam family spent much of their lives working in Saudi Arabia, Muk always kept her family ties to Myerstown very close. Muk is very thoughtful, exceptionally kind, with the biggest heart of anyone around.
In college I would receive notices from the post office now and again that I had a package waiting for me. Curious I'd speed down to the post office and find a shoe box sized package wrapped in plain brown packaging paper. It would always be from Muk. It would be a shoe box filled with homemade brownies or banana bread. It was awesome! When you're living on chili dogs and burritos nothing hits the spot so well as a box of Muk's homemade goodness!
I can't tell you how many smiles Muk has brought to so many people just by taking the time to send a simple card. I know from experience that a card from Muk would seem to show up just in time, when I needed a smile most.
I would visit Muk often when her and Rhea had retired to the Eastern Shore of Virginia. She had rules. No man and woman could sleep together unless they were married. Everyone who stayed for a couple days or so had to swim laps in the pool everyday, kids, adults, everyone. A chart on the fridge tracked daily swimming accomplishments. She was great that way.
A teacher in an American school in Saudi Arabia, a golfer, a tennis player, a housewife extraordinaire, Muk will always occupy a huge part in my heart. This weekend she celebrated her 80th birthday with many close family members traveling to Florida to shower HER with cards.
HAPPY BIRTHDAY MUK! Barb and I love you much!
Our thoughts are also with Lou and Doris in Florida this week. Lou is preparing for shoulder surgery. Lou and Doris are also very special, unique people. Doris's heart is as big as the day is long. And Lou? Well how many people do you know who stop their bride halfway down the aisle to sing to them? Lou is that kind of special.
I have no doubt that Lou will pull through the surgery well. He's a tough guy. But I also know he's a typical stubborn male gorilla like me, so I ask him to practice patience with his recovery time. It's something I have to be reminded of myself quite often.
Oh, and to all our friends and family in Florida...it's 41-degrees up here and I'm extremely jealous!!! lol (pouty lip)
Saturday, November 7, 2009
The Big Picture
There is little doubt that Memorial Sloan-Kettering is like a Holy Grail in the world of cancer care. As soon as I returned all the nurses in Lancaster approached me with questions about what it was like.
It is a very professional place, set-up meticulously and extrememly well organized. First I had to be registered. Then I was issued a member card so I could go straight to my doctor's office in the future. Then I met with a very well-versed nurse. Then I finally met with the doctor. It was obvious that the whole event wasn't being timed to see how fast I could be run through the machine. I was a mission and the Sloan-Kettering team were dedicated to giving their best to that mission. I appreciated that.
If I have one complaint, and I do only have one complaint, I wasn't fond of having to recap my total cancer history four separate times. I had to gather my entire treatment history and forward it to Sloan-Kettering before they would even consider seeing me. When I registered I had to rewrite my cancer history once again. When I met with the nurse I had to review it with her in great detail. Then when I met with the doctor I had to once again go over my entire cancer history.
We worked hard, with the help of Lancaster General, to compile my entire history before the appointment was made. I never anticipated that I'd have to have my extensive cancer history committed to memory to repeat over and over and over again.
But in the big picture I'd rather have the doctor and his team err on the side of an abundance of information than very little information. This doctor definitely took a great interest in everything, from how the cancer was originally diagnosed up until today with the cancer spread throughout my body.
The doctor and I did discuss a somewhat philosophical subject that I had discussed recently with my local oncologist as well. It gives me, and my "team," things to think about.
Both doctors now have explained to me that we are reaching a point where all the doctors are truly doing through further drugs, and through radiation, is beating me into a pulp. Chemotherapy is poison. Radiation is poison. Everything in cancer care is meant to kill the cancer, and just stop short of killing you. After more than three-years of chemo and radiation both of these doctors have now explained to me that they are concerned that their treatments will do more to make me suffer more than anything else.
I understand what they're saying.
Both doctors have told me that ultimately it is up to me. If I choose to continue getting beat into a pulp they will oblige. But they want to make me aware, as the doc at Sloan-Kettering said, "Quality of life may be more important than quantity of life."
It's exactly how kidney cancer was advertised to me from the very beginning. I've always known this. It's an interesting issue. It's an issue I wanted to share with all of those who have incredibly built up such magnificant support around me.
It's not a question I face today. It's more of a looming question that I must consider moving forward. There doesn't have to be a "yes" or a "no" as an answer either. It can be hedging across borders.
I am very curious though how others would interpret this question.
I've always felt that I was compelled by God and by my faith to treat my body as well as possible, like a temple, until called by God. I've always thought that we are meant to continue our Earthly lives through all troubles and tribulations. I've always felt that we all had our crosses to bear and bear them we must.
This is why I've kept up this fight. People are not supposed to be on chemo for more than three-years, or have five Gamma Knife treatments.
But here I am, a piece of Swiss Cheese or not.
It is a very professional place, set-up meticulously and extrememly well organized. First I had to be registered. Then I was issued a member card so I could go straight to my doctor's office in the future. Then I met with a very well-versed nurse. Then I finally met with the doctor. It was obvious that the whole event wasn't being timed to see how fast I could be run through the machine. I was a mission and the Sloan-Kettering team were dedicated to giving their best to that mission. I appreciated that.
If I have one complaint, and I do only have one complaint, I wasn't fond of having to recap my total cancer history four separate times. I had to gather my entire treatment history and forward it to Sloan-Kettering before they would even consider seeing me. When I registered I had to rewrite my cancer history once again. When I met with the nurse I had to review it with her in great detail. Then when I met with the doctor I had to once again go over my entire cancer history.
We worked hard, with the help of Lancaster General, to compile my entire history before the appointment was made. I never anticipated that I'd have to have my extensive cancer history committed to memory to repeat over and over and over again.
But in the big picture I'd rather have the doctor and his team err on the side of an abundance of information than very little information. This doctor definitely took a great interest in everything, from how the cancer was originally diagnosed up until today with the cancer spread throughout my body.
The doctor and I did discuss a somewhat philosophical subject that I had discussed recently with my local oncologist as well. It gives me, and my "team," things to think about.
Both doctors now have explained to me that we are reaching a point where all the doctors are truly doing through further drugs, and through radiation, is beating me into a pulp. Chemotherapy is poison. Radiation is poison. Everything in cancer care is meant to kill the cancer, and just stop short of killing you. After more than three-years of chemo and radiation both of these doctors have now explained to me that they are concerned that their treatments will do more to make me suffer more than anything else.
I understand what they're saying.
Both doctors have told me that ultimately it is up to me. If I choose to continue getting beat into a pulp they will oblige. But they want to make me aware, as the doc at Sloan-Kettering said, "Quality of life may be more important than quantity of life."
It's exactly how kidney cancer was advertised to me from the very beginning. I've always known this. It's an interesting issue. It's an issue I wanted to share with all of those who have incredibly built up such magnificant support around me.
It's not a question I face today. It's more of a looming question that I must consider moving forward. There doesn't have to be a "yes" or a "no" as an answer either. It can be hedging across borders.
I am very curious though how others would interpret this question.
I've always felt that I was compelled by God and by my faith to treat my body as well as possible, like a temple, until called by God. I've always thought that we are meant to continue our Earthly lives through all troubles and tribulations. I've always felt that we all had our crosses to bear and bear them we must.
This is why I've kept up this fight. People are not supposed to be on chemo for more than three-years, or have five Gamma Knife treatments.
But here I am, a piece of Swiss Cheese or not.
Friday, November 6, 2009
New York - Part 3
On Monday Susan, Bill, Barb and I all got ourselves ready, grabbed a cab in front of the hotel and made our way toward Memorial Sloan-Kettering where I was scheduled to meet with the doctor.
Getting a cab in front of the hotel is as easy as it gets. Cabs troll in front of the hotel just looking for any hotel guest that needs a ride. Cabbies "live" in their cabs and apparently only take showers or baths occasionally. So each cab is filled with the fragrant aroma of the cabbie himself.
Again there was a language barrier. But the cabbie seemed to recognize something we said and took off.
Sloan-Kettering is actually a series of buildings in one general area. There is an overall hospital, and there are individual buildings for different types of cancer. We were looking for a specific building that was solely for kidney and testicular cancers. The cabbie dropped us somewhere in the middle of the Sloan-Kettering complex of buildings. We knew we were close. But we were lost.
One of Susan's great talents for the group was as our spokesperson. She was the representative of our group to New York City. We stumbled about, looking aimlessly around for our destination, when Susan took charge.
A lady passed Susan and she tapped her on the shoulder and asked her if she knew where Sloan-Kettering was. The lady turned around, startled looking, and she wasn't a lady at all. It was Mick Jagger!
Now it wasn't actually Mick Jagger. But it was the closest thing to Mick Jagger I have ever seen, and it obviously was no accident. The picture I cannnot get out of my head is Susan and Mick Jagger both seeing each other for the first time. Susan was startled at the site of Mick, with good reason. Mick was startled with Susan because Sloan-Kettering was just across the street and because you're not really supposed to talk to people on New York City streets.
That meeting is an image that will be locked in my brain forever. I wish I could share it with you. Every time I think of it I get the biggest smile. It's the highlight of my trip. Hey, I'm a simple guy.
Mick had shown us the way. We crossed one street and there was the Sloan-Kettering building where we needed to be.
(Part 4 Tomorrow) Overall Sloan-Kettering Review
Getting a cab in front of the hotel is as easy as it gets. Cabs troll in front of the hotel just looking for any hotel guest that needs a ride. Cabbies "live" in their cabs and apparently only take showers or baths occasionally. So each cab is filled with the fragrant aroma of the cabbie himself.
Again there was a language barrier. But the cabbie seemed to recognize something we said and took off.
Sloan-Kettering is actually a series of buildings in one general area. There is an overall hospital, and there are individual buildings for different types of cancer. We were looking for a specific building that was solely for kidney and testicular cancers. The cabbie dropped us somewhere in the middle of the Sloan-Kettering complex of buildings. We knew we were close. But we were lost.
One of Susan's great talents for the group was as our spokesperson. She was the representative of our group to New York City. We stumbled about, looking aimlessly around for our destination, when Susan took charge.
A lady passed Susan and she tapped her on the shoulder and asked her if she knew where Sloan-Kettering was. The lady turned around, startled looking, and she wasn't a lady at all. It was Mick Jagger!
Now it wasn't actually Mick Jagger. But it was the closest thing to Mick Jagger I have ever seen, and it obviously was no accident. The picture I cannnot get out of my head is Susan and Mick Jagger both seeing each other for the first time. Susan was startled at the site of Mick, with good reason. Mick was startled with Susan because Sloan-Kettering was just across the street and because you're not really supposed to talk to people on New York City streets.
That meeting is an image that will be locked in my brain forever. I wish I could share it with you. Every time I think of it I get the biggest smile. It's the highlight of my trip. Hey, I'm a simple guy.
Mick had shown us the way. We crossed one street and there was the Sloan-Kettering building where we needed to be.
(Part 4 Tomorrow) Overall Sloan-Kettering Review
Thursday, November 5, 2009
New York Part 2
I am incredibly thankful that Barb's Mom and Dad joined us on our trip to New York. They gave us a wider base to stand on, if that makes sense, firmer footing, a couple good friends to turn to amongst the millions in the big city.
I think we all agreed that the trip was conducted well. We did not want to have to endure too much traveling all in one day. So Sunday was all about getting to our hotel in New York. Monday was all about meeting the doctor at Sloan-Kettering. And Tuesday was all about getting home.
Our train came into Penn Station on Sunday late afternoon and our first challenge was finding our way out of Penn Station. I think somehow we walked the length of the facility before we somehow popped out on a very crowded street.
We just wanted a taxi to the hotel.
Some joker decided to help us hail a cab, for a tip of course. Problem with the cab drivers seemed to know him and seemed to be ignoring him. Susan and I started trying to hail a cab as well and he started to compete with us. He was shady. But eventually he did get us a cab and we were heading north through the city.
I'm sure everyone knows this, although it still seems a little strange, but no cabbies in New York speak English. You have a weird conversation and the cabbie takes off and you just can't believe that there was any understanding of where you want to go...but then somehow you get there.
On the way to the hotel our cabbie endlessly talked to his girlfriend on the phone while we whizzed in and out of cars and through side streets. I didn't think there was any chance we would reach our destination...and then...poof...he made one turn and we were there.
I asked for two rooms as far away from the street noise as possible. We landed on the 15th floor. Everything was clean. The staff was kind and professional.
By the end of the trip we had all commmented about how polite the people in New York had been. I think we were all a bit surprised by this. Wouldn't you be? Our hotel was on the Upper East Side, in a residential neighborhood, between Central Park and the East River.
Barb and her parents went out for a walk one morning and visited the East River.
"How was the river?" I asked Barb.
"Stinky," she replied with a scrunched up face.
(Part 3 Tomorrow) Susan asks Mick Jagger for directions.
I think we all agreed that the trip was conducted well. We did not want to have to endure too much traveling all in one day. So Sunday was all about getting to our hotel in New York. Monday was all about meeting the doctor at Sloan-Kettering. And Tuesday was all about getting home.
Our train came into Penn Station on Sunday late afternoon and our first challenge was finding our way out of Penn Station. I think somehow we walked the length of the facility before we somehow popped out on a very crowded street.
We just wanted a taxi to the hotel.
Some joker decided to help us hail a cab, for a tip of course. Problem with the cab drivers seemed to know him and seemed to be ignoring him. Susan and I started trying to hail a cab as well and he started to compete with us. He was shady. But eventually he did get us a cab and we were heading north through the city.
I'm sure everyone knows this, although it still seems a little strange, but no cabbies in New York speak English. You have a weird conversation and the cabbie takes off and you just can't believe that there was any understanding of where you want to go...but then somehow you get there.
On the way to the hotel our cabbie endlessly talked to his girlfriend on the phone while we whizzed in and out of cars and through side streets. I didn't think there was any chance we would reach our destination...and then...poof...he made one turn and we were there.
I asked for two rooms as far away from the street noise as possible. We landed on the 15th floor. Everything was clean. The staff was kind and professional.
By the end of the trip we had all commmented about how polite the people in New York had been. I think we were all a bit surprised by this. Wouldn't you be? Our hotel was on the Upper East Side, in a residential neighborhood, between Central Park and the East River.
Barb and her parents went out for a walk one morning and visited the East River.
"How was the river?" I asked Barb.
"Stinky," she replied with a scrunched up face.
(Part 3 Tomorrow) Susan asks Mick Jagger for directions.
Wednesday, November 4, 2009
Back From the Big City
We've virtually just landed back here in Marietta from our trip to New York City. We immediately have to get ourselves together to run out to the Lancaster General Health Campus to meet with the nurse practitioner and have an injection of Interferon.
We're still trying to decrompress from the trip, and start to unpack our suitcases. We're still trying to get used to sleeping on the second floor (of our house) rather than the 15th floor (of the hotel).
There's a lot of stories to share from New York. But with little time this morning I should share the main story and then follow with others.
Barb and I did meet with the kidney cancer specialist at Sloan-Kettering. He was a very young guy, but he was obviously suited for his prestigious position. The doctor was very sharp, and certainly had skills both as an academic and as a physical, hands-on doctor.
We spoke of all kinds of different things. But here is the bottom line:
- because of the spread of the cancer to my brain I am not eligible for any clinical trials
- if cancer will stay out of my brain for at least three-months I WOULD be eligible for clinical trials
- there are two FDA approved kidney cancer drugs out there that I have not tried yet.
The doctor at Sloan-Kettering was planning on contacting my oncologist here in Lancaster today to discuss these options.
There is much more to discuss as time permits. But that is the main response we received from the expert in New York.
There are some fun stories from New York too, like when Barb's Mom asked Mick Jagger for directions on the street.
We're still trying to decrompress from the trip, and start to unpack our suitcases. We're still trying to get used to sleeping on the second floor (of our house) rather than the 15th floor (of the hotel).
There's a lot of stories to share from New York. But with little time this morning I should share the main story and then follow with others.
Barb and I did meet with the kidney cancer specialist at Sloan-Kettering. He was a very young guy, but he was obviously suited for his prestigious position. The doctor was very sharp, and certainly had skills both as an academic and as a physical, hands-on doctor.
We spoke of all kinds of different things. But here is the bottom line:
- because of the spread of the cancer to my brain I am not eligible for any clinical trials
- if cancer will stay out of my brain for at least three-months I WOULD be eligible for clinical trials
- there are two FDA approved kidney cancer drugs out there that I have not tried yet.
The doctor at Sloan-Kettering was planning on contacting my oncologist here in Lancaster today to discuss these options.
There is much more to discuss as time permits. But that is the main response we received from the expert in New York.
There are some fun stories from New York too, like when Barb's Mom asked Mick Jagger for directions on the street.
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