Continuing the theme from yesterday, here are some more:
1) Help with yard work.
2) Send cookies - make sure it's OK medically for the person to have them.
3) Help with dusting and vacuuming.
4) Put together a bag of fun stuff. For reference to what I call "fun stuff" go to the Archie McPhee website. I have a friend who has this down to an art/science.
5) Send a prepared food gift certificate. Here's a website suggestion.
6) Don't worry about what to say. Let natural conversation flow as you would at any other time.
7) Don't change your relationship because of the circumstance. Your relationship will change as a result of the circumstance. Don't be surprised if it's difficult to relate at first. Hang in there and welcome the change. Trust me on this, your relationship will be strengthened if you hang in there.
8) Send an e-mail to say "hello" and connect.
9) Have a Children's Sunday School Class send handmade cards. I received some from the Children's Class in the church in which I grew up. Priceless!
10) Go with them on important doctor visits and be a second set of ears. Take paper and pen to take notes.
I've mentioned my theater friend Jay in previous posts. He is having a tough time right now. Please keep him in your thoughts and prayers. I remember when I first met him and his infectious laugh.
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Let's See How Far This Can Go
My goal is to come up with 100 things you can do for someone experiencing a tough time (not just cancer,not just a physical illness, including someone experiencing personal loss such as a job or death of a friend or family member). Feel free to add your contributions like "Anonymous" did yesterday. I'm putting their comment first on today's list. None of these are me asking for help. They are lessons I've learned from people much wiser and thoughtful than me. I'll start with 10
1)Learn to listen well and be a friend. Allow the person with the problem to get it out and begin to recover.
2)If you go to visit in the hospital, take snack treats for the staff.
3)Send "Thinking of You" cards every so often.
4)Do their laundry for them.
5)Take lunch or dinner and stick around to enjoy it with them. Or, just go and talk if you aren't sure of their food preferences.
6)Go with your friend for any treatments they require.
7)Help them create a journal of their experiences (i.e. written in a regular journal or a blog - even though them blog folks can be obnoxious with their updates and stuff).
8)Buy them "Thank You" cards and stamps so they can write notes and mail them.
9)Find out what makes them laugh and rent a movie, or buy a book to facilitate their laughter.
10)If their church records the services, take a copy of the church service to them.
More to come......
1)Learn to listen well and be a friend. Allow the person with the problem to get it out and begin to recover.
2)If you go to visit in the hospital, take snack treats for the staff.
3)Send "Thinking of You" cards every so often.
4)Do their laundry for them.
5)Take lunch or dinner and stick around to enjoy it with them. Or, just go and talk if you aren't sure of their food preferences.
6)Go with your friend for any treatments they require.
7)Help them create a journal of their experiences (i.e. written in a regular journal or a blog - even though them blog folks can be obnoxious with their updates and stuff).
8)Buy them "Thank You" cards and stamps so they can write notes and mail them.
9)Find out what makes them laugh and rent a movie, or buy a book to facilitate their laughter.
10)If their church records the services, take a copy of the church service to them.
More to come......
Monday, September 28, 2009
Coming Soon To A Blog Near You
Busy morning. No time to post yet (until now).
I'm open for suggestions for future postings and information that you would like.
I am going to put up a list of "Things You Can Do" to help you respond to others in future situations. None of them are my wisdom or knowledge. They all come from things folks have done for me over the past year.
I'm open for suggestions for future postings and information that you would like.
I am going to put up a list of "Things You Can Do" to help you respond to others in future situations. None of them are my wisdom or knowledge. They all come from things folks have done for me over the past year.
Saturday, September 26, 2009
Contents In Package Do Settle After Filling
I was pretty fired up yesterday that I would be able to do some more things (like going back to church, going into the office, etc.) than I have been doing. I was a bit disappointed to learn that those things are still on hold - especially since I feel really well.
However, the numbers don't lie and the blood counts still indicate that there is still work to do and that my immune system is still compromised. For example, my platelets were lower yesterday than they were two weeks ago, but are higher than they have been in months. When you have been get treated medically in the past and recovery has come in a matter of days, it's sometimes difficult to get your head around a treatment that lasts for months, possibly years.
A day's worth of introspection helps sort things out.
"Some men are born to live at ease, doing what they please,
Richer than the bees are in honey
Never growing old, never feeling cold
Pulling pots of gold from thin air
The best in every town, best at shaking down
Best at making mountains of money
They can't take it with them, but what do they care?
They get the center of the meat, cushions on the seat
Houses on the street where it's sunny..
Summers at the sea, winters warm and free
All of this and we get the rest...
But who is the land for? The sun and the sand for?
You guessed! It's all for the best..." - "Godspell" / Stephen Schwartz
However, the numbers don't lie and the blood counts still indicate that there is still work to do and that my immune system is still compromised. For example, my platelets were lower yesterday than they were two weeks ago, but are higher than they have been in months. When you have been get treated medically in the past and recovery has come in a matter of days, it's sometimes difficult to get your head around a treatment that lasts for months, possibly years.
A day's worth of introspection helps sort things out.
"Some men are born to live at ease, doing what they please,
Richer than the bees are in honey
Never growing old, never feeling cold
Pulling pots of gold from thin air
The best in every town, best at shaking down
Best at making mountains of money
They can't take it with them, but what do they care?
They get the center of the meat, cushions on the seat
Houses on the street where it's sunny..
Summers at the sea, winters warm and free
All of this and we get the rest...
But who is the land for? The sun and the sand for?
You guessed! It's all for the best..." - "Godspell" / Stephen Schwartz
Friday, September 25, 2009
Must Stay Focused
Back from today's visit with the Nurse Practitioner. It was great to see her as I haven't seen her in 3 months. I told her I was glad to "be home." She's been an important part of this whole process from day 1. She's done a great job with making sure my head has stayed in the game.
I have some freedom. I am now allowed to do my own laundry and go to the grocery store (at non-peak times). I'm even allowed to go to a restaurant- but again, at non-peak times.
Crowd situations - Movies, Church, Theatre, Sporting Events, etc. are forbidden.
Still not allowed to go into my work office for another 2-4 weeks. They said that my counts are good, but that the immune system is still compromised to the point that it wouldn't "accept" the flu vaccinations yet and that I shouldn't put myself in situations where I would be susceptible to viral infection. The main words of wisdom today was: "Wash your hands." I've been keeping the soap and hand sanitizer folks in business since last year.
Here's another interesting Stem Cell article from today's Baltimore Sun.
Maybe it's because I've watched too much TV, but this product makes no sense to me. Who wants to sit in a bathtub and wait for it to fill up when you can be doing other things? It also bums me out that Karen Grassle is in their commercials. In my opinion, she was the best looking TV mom of the 70's.
I have some freedom. I am now allowed to do my own laundry and go to the grocery store (at non-peak times). I'm even allowed to go to a restaurant- but again, at non-peak times.
Crowd situations - Movies, Church, Theatre, Sporting Events, etc. are forbidden.
Still not allowed to go into my work office for another 2-4 weeks. They said that my counts are good, but that the immune system is still compromised to the point that it wouldn't "accept" the flu vaccinations yet and that I shouldn't put myself in situations where I would be susceptible to viral infection. The main words of wisdom today was: "Wash your hands." I've been keeping the soap and hand sanitizer folks in business since last year.
Here's another interesting Stem Cell article from today's Baltimore Sun.
Maybe it's because I've watched too much TV, but this product makes no sense to me. Who wants to sit in a bathtub and wait for it to fill up when you can be doing other things? It also bums me out that Karen Grassle is in their commercials. In my opinion, she was the best looking TV mom of the 70's.
Thursday, September 24, 2009
My Little Town
Here's an old picture of the town (Friendsville, MD) near where I grew up. The view is from west of town. It was about a year ago when I was last there. In some ways, it seems like the year has flown by. Looks like the next time I'll get to visit there will be Thanksgiving. Just in time for buckwheat cake season.
I have an appt. tomorrow with the Nurse Practitioner to review blood counts and discuss progress and review "house arrest" rules. Will post that information tomorrow afternoon.
Wednesday, September 23, 2009
Bo And His Big Trip
Got this e-mail from Bo's mother yesterday:
"Hey! We just got word that Bo’s wish (granted by the "Make A Wish" Foundation) is being granted on October 27- 30. We’re going out to Hollywood on the 27th to meet the actor who voices the Ben 10 character and watch him do his voiceover work (28th). Then we’re going to LegoLand on the 29th and come home on the 30th. A whirlwind trip but you know that’s how we roll!! ......You know, they really should have Make-a-Wish for grown ups too! What would your wish be???"
First, I'm old because I had to Google "Ben 10." Then I looked for it on The Cartoon Network. Pretty cool stuff! I'm happy to say I knew what "LegoLand" was and was glad they still appeal to young kids. Can't wait to see pictures and hear stories of their trip.
As far as her question to me, I answered it, but I'll keep it to myself. So that you can rest comfortably, it didn't involve anything illegal or immoral. Honest!
"Hey! We just got word that Bo’s wish (granted by the "Make A Wish" Foundation) is being granted on October 27- 30. We’re going out to Hollywood on the 27th to meet the actor who voices the Ben 10 character and watch him do his voiceover work (28th). Then we’re going to LegoLand on the 29th and come home on the 30th. A whirlwind trip but you know that’s how we roll!! ......You know, they really should have Make-a-Wish for grown ups too! What would your wish be???"
First, I'm old because I had to Google "Ben 10." Then I looked for it on The Cartoon Network. Pretty cool stuff! I'm happy to say I knew what "LegoLand" was and was glad they still appeal to young kids. Can't wait to see pictures and hear stories of their trip.
As far as her question to me, I answered it, but I'll keep it to myself. So that you can rest comfortably, it didn't involve anything illegal or immoral. Honest!
Tuesday, September 22, 2009
More Stuff I Learned
There is a company in Rockville MD named Neuralstem that has received FDA approval for clinical trials to treat Lou Gehrig's disease. Here's a link to an article about it. Neat stuff.
Another article appeared in today's Baltimore Sun about the states of Maryland and California collaborating on stem cell research.
I know it's a bit self-focused to talk about these, but it's kind of like when you buy a new car and you notice that there are lot of cars like yours on the road because you are paying attention to them due to your recent purchase.
However, I find it all fascinating. That, and the more I know about it makes me rely less on those who communicate with emotion instead of knowledge.
"I don't wanna know your name
Cause you don't look the same
The way you did before
OK you think you got a pretty face
But the rest of you is out of place" ("Fox On The Run" - Sweet)
Another article appeared in today's Baltimore Sun about the states of Maryland and California collaborating on stem cell research.
I know it's a bit self-focused to talk about these, but it's kind of like when you buy a new car and you notice that there are lot of cars like yours on the road because you are paying attention to them due to your recent purchase.
However, I find it all fascinating. That, and the more I know about it makes me rely less on those who communicate with emotion instead of knowledge.
"I don't wanna know your name
Cause you don't look the same
The way you did before
OK you think you got a pretty face
But the rest of you is out of place" ("Fox On The Run" - Sweet)
Monday, September 21, 2009
I Learned This
The power of the nurse. I haven't met any Nurse Ratched's yet.
I've learned that they have chosen their profession not for the money, but for their care and concern for patients. Many of the oncology nurses have chosen their profession because they have been affected by someone in their lives who had cancer. They will tell you that when a patient does well, it reaffirms their career choice profession.
I've learned a lot from them. A friend of mine who is a nurse told me that being demanding of a nurse doesn't necessarily guarantee you the best care. She taught me the expression, "Would it be possible...." as a preface to requesting something of a nurse. I used that wording quite often while I was at MCV and never received a negative response.
I remember one morning when the day nurse had just started making her rounds. As she came into my room, I had a bout of nausea and I apologized and asked her if it would be possible to get some anti-nausea medicine. Since I had the port lines in me, she was able to inject it intravenously and I recovered in no time at all. As I apologized again, she stated, "It's OK, I have that effect on most men."
I could share countless stories of the good work by nurses (and I probably will) since last year. I will share the stories so that you can know of their importance to your good health, physically and mentally, should you be in a situation where you interact with them as a patient or as a caregiver to a patient.
Saturday, September 19, 2009
Some Day Soon, I Hope..
I will be able to post this. For now, that's where mentally I am today. That, and some college football. Will continue the stories about the other folks on Monday.
Friday, September 18, 2009
The Next Guy
We never formally introduced ourselves other than an occasional head nod of recognition. He sat two chairs away from me in the stem cell collection room and was pretty absorbed in his PSP game device. Seemed like a nice enough fellow and if I had to guess, I would guess that he was in his mid to late 20's.
Didn't learn much about him, but would also see him in the clinic before and after we were both admitted to the hospital. Our hospital stays overlapped each other. I would see him walking in the hallway every so often and would also see him sitting in his room when I would go for my walks. He pretty much kept to himself.
To sidetrack and answer a question you may have, as a patient, you were never allowed to enter another patient's room. You could stand outside of their doorway and talk to them from the hallway. You could both be in the hallway at the same time, but anytime you were in the hallway, you had to make sure you were wearing your mask.
When I was in a clinic appt. after the hospital stay, I heard him talking to a friend about when he would have his second transplant. As I understood it (and I could be incorrect), he was facing another stay in the hospital for a second round of chemo and then another transplant. I was curious for the details, but did not press as frankly, it overwhelmed me to think about it, I'm sure it was overwhelming for him to talk about it.
He was from out of town, so until he reaches his determined milestone (i.e. as mine is 100 days post transplant), he is not allowed to leave Richmond. I have no clue how much longer he has to stay in town. There are hotels, apartments and MCV has the Hospitality House that offers rooms at a reduced rate, in which people can stay.
It's not easy for the out of town patients. A patient that was across the hall from me in the hospital was an allogeneic patient from Roanoke and he had been in Richmond since February and was expected to be in town 6-8 more weeks from mid-July. As I calculate it, hopefully he has made it back home.
"Decorate your home. It gives the illusion that your life is more interesting than it really is." - Charles M. Schulz
Didn't learn much about him, but would also see him in the clinic before and after we were both admitted to the hospital. Our hospital stays overlapped each other. I would see him walking in the hallway every so often and would also see him sitting in his room when I would go for my walks. He pretty much kept to himself.
To sidetrack and answer a question you may have, as a patient, you were never allowed to enter another patient's room. You could stand outside of their doorway and talk to them from the hallway. You could both be in the hallway at the same time, but anytime you were in the hallway, you had to make sure you were wearing your mask.
When I was in a clinic appt. after the hospital stay, I heard him talking to a friend about when he would have his second transplant. As I understood it (and I could be incorrect), he was facing another stay in the hospital for a second round of chemo and then another transplant. I was curious for the details, but did not press as frankly, it overwhelmed me to think about it, I'm sure it was overwhelming for him to talk about it.
He was from out of town, so until he reaches his determined milestone (i.e. as mine is 100 days post transplant), he is not allowed to leave Richmond. I have no clue how much longer he has to stay in town. There are hotels, apartments and MCV has the Hospitality House that offers rooms at a reduced rate, in which people can stay.
It's not easy for the out of town patients. A patient that was across the hall from me in the hospital was an allogeneic patient from Roanoke and he had been in Richmond since February and was expected to be in town 6-8 more weeks from mid-July. As I calculate it, hopefully he has made it back home.
"Decorate your home. It gives the illusion that your life is more interesting than it really is." - Charles M. Schulz
Thursday, September 17, 2009
A Break In The Action
Not much going on with me until next Friday's appt. with the Nurse Practitioner. I feel good and folks that haven't seen me in awhile say I'm looking good. Hair is starting to come back and I'm shaving regularly (not daily). Using an electric razor to avoid nicks and cuts and bleeding issues.
Speaking of...That Bo down in North Carolina is just showing off. His mother e-mailed me yesterday and told me that his platelet count the other day was 420. Low end of normal is 140. Gotta love the vigor of youth.
Going to share a story or two the next couple of days about some of my stem cell collection alumni. I'm not going to name them by name but want you to know about them as they have interesting stories.
The first one I will tell you about is an older lady who was diagnosed with a form of Non-Hodgkin's Lymphoma in December 2007. She told me that her symptoms were the same as mine (bloating) and when she went to the doctor he told her she came in just in time. She went through chemo and radiation and thought they had gotten it under control. It came back later on and she became a candidate for the autologous stem cell transplant therapy. I had the pleasure of meeting her husband and they are huge college football fans. We had good conversation during clinic days when we were in there together. On the second day of stem cell collection, her husband brought her a pint of ice cream to eat. She introduced us all to him. As he was leaving and within ear shot, I asked her, "Didn't your husband have different color hair yesterday?" That's one of my favorite questions to ask someone I've met before when I haven't met their significant other previously. She was very well liked by the staff and the last I saw her a few weeks ago, she was on her way to radiology to have her lines removed. As I had mine removed a few days before her, I didn't tell her about my experience. Didn't want to scare her and also, she may not have had as hard a time with it as me. Her oncologist is in the same practice as mine, so we may run into each other again. I regret that I didn't exchange contact info with her and her husband, but I believe we will run into each other again. The thing that most impressed me about her was her spunk and desire to keep going in spite of the return of her alien.
“May you never forget what is worth remembering, nor ever remember what is best forgotten”
Speaking of...That Bo down in North Carolina is just showing off. His mother e-mailed me yesterday and told me that his platelet count the other day was 420. Low end of normal is 140. Gotta love the vigor of youth.
Going to share a story or two the next couple of days about some of my stem cell collection alumni. I'm not going to name them by name but want you to know about them as they have interesting stories.
The first one I will tell you about is an older lady who was diagnosed with a form of Non-Hodgkin's Lymphoma in December 2007. She told me that her symptoms were the same as mine (bloating) and when she went to the doctor he told her she came in just in time. She went through chemo and radiation and thought they had gotten it under control. It came back later on and she became a candidate for the autologous stem cell transplant therapy. I had the pleasure of meeting her husband and they are huge college football fans. We had good conversation during clinic days when we were in there together. On the second day of stem cell collection, her husband brought her a pint of ice cream to eat. She introduced us all to him. As he was leaving and within ear shot, I asked her, "Didn't your husband have different color hair yesterday?" That's one of my favorite questions to ask someone I've met before when I haven't met their significant other previously. She was very well liked by the staff and the last I saw her a few weeks ago, she was on her way to radiology to have her lines removed. As I had mine removed a few days before her, I didn't tell her about my experience. Didn't want to scare her and also, she may not have had as hard a time with it as me. Her oncologist is in the same practice as mine, so we may run into each other again. I regret that I didn't exchange contact info with her and her husband, but I believe we will run into each other again. The thing that most impressed me about her was her spunk and desire to keep going in spite of the return of her alien.
“May you never forget what is worth remembering, nor ever remember what is best forgotten”
Wednesday, September 16, 2009
I Found This
I promised way back that I would do some research on how to locate blood banks. To find blood banks in your area, click here.
Some of you all may not be within driving distance to a location. However (and my medical professional friends can help me verify this), call your local hospital and ask them if they are able to accept blood donations. You don't have to give platelets specifically to make me content (as if you should worry about that anyway). A few of the platelet transfusions I received were gathered from whole blood donations.
"There's nothing you can do that can't be done.
Nothing you can sing that can't be sung.
Nothing you can say but you can learn how to play the game.
It's easy.
Nothing you can make that can't be made.
No one you can save that can't be saved.
Nothing you can do but you can learn how to be you in time.
It's easy." - Lennon/McCartney
Some of you all may not be within driving distance to a location. However (and my medical professional friends can help me verify this), call your local hospital and ask them if they are able to accept blood donations. You don't have to give platelets specifically to make me content (as if you should worry about that anyway). A few of the platelet transfusions I received were gathered from whole blood donations.
"There's nothing you can do that can't be done.
Nothing you can sing that can't be sung.
Nothing you can say but you can learn how to play the game.
It's easy.
Nothing you can make that can't be made.
No one you can save that can't be saved.
Nothing you can do but you can learn how to be you in time.
It's easy." - Lennon/McCartney
Tuesday, September 15, 2009
A Bo-mentous Day
Mr. Bo, down in North Carolina, is scheduled to have his port removed today. It's a big deal. A friend of mine had one and said she had hers removed as soon as it was permitted so there were no more physical reminders of cancer in her body. Good luck and best wishes to Bo!
From last Thursday, blood counts are good, or still climbing. As a matter of fact, my white counts (the infection fighters) are now in the normal range. Still not allowed to be out and about, but soon, I hope. Platelets had not moved upward much, but the doctor said they were the last thing to move upward in the process. They are still below normal, but significantly higher than they have been in awhile. Overall, the doctor and nurses were very pleased with my progress. If they are pleased, I'm pleased. My next appt. is on September 25 with the Nurse Practitioner for a CBC (complete blood count) review in which they withdraw and examine all of the parts of the blood looking for any problems or progress.
I received a packet from MCV the following day with recommendations for follow up appts. for the next 5 years. Included in their bundle of fun is a bone marrow biopsy every six months for the next three years and then one a year for the remaining two years. If I haven't explained in the past, the point of a bone marrow biopsy is to see if there are any signs of cancer in the bone marrow, which would then feed into the blood system and create havoc in organs, etc. Seriously, and I say this now, compared to the removal of the lines that were in me, the bone marrow biopsy is a walk in the park. Of course, I will have to bribe the person who has done the previous two to stay in her job for the next five years as she does a fantastic job when she does bone marrow biopsies.
There will also be CT and PET scans over that same time period. It was kind of odd to see the year 2014 on the paperwork. Sounds like an excuse to plan another party 5 years from now.
From last Thursday, blood counts are good, or still climbing. As a matter of fact, my white counts (the infection fighters) are now in the normal range. Still not allowed to be out and about, but soon, I hope. Platelets had not moved upward much, but the doctor said they were the last thing to move upward in the process. They are still below normal, but significantly higher than they have been in awhile. Overall, the doctor and nurses were very pleased with my progress. If they are pleased, I'm pleased. My next appt. is on September 25 with the Nurse Practitioner for a CBC (complete blood count) review in which they withdraw and examine all of the parts of the blood looking for any problems or progress.
I received a packet from MCV the following day with recommendations for follow up appts. for the next 5 years. Included in their bundle of fun is a bone marrow biopsy every six months for the next three years and then one a year for the remaining two years. If I haven't explained in the past, the point of a bone marrow biopsy is to see if there are any signs of cancer in the bone marrow, which would then feed into the blood system and create havoc in organs, etc. Seriously, and I say this now, compared to the removal of the lines that were in me, the bone marrow biopsy is a walk in the park. Of course, I will have to bribe the person who has done the previous two to stay in her job for the next five years as she does a fantastic job when she does bone marrow biopsies.
There will also be CT and PET scans over that same time period. It was kind of odd to see the year 2014 on the paperwork. Sounds like an excuse to plan another party 5 years from now.
Monday, September 14, 2009
"...I'm Looking At Myself, Reflections Of My Mind..." *
* - The Moody Blues
Continuing on yesterday's theme a little bit (tomorrow, I will get around to filling you in on some medical details from last Thursday's appt. and some new information from MCV). I've told several people that for a cancer patient to have a good outcome, the impact on the medical professionals involved must be like landing a big account (if you are in sales, like myself). There must be a sense of accomplishment that they feel. For them, however, the stakes are much larger.
With that said, as I look back on my career, I realize that the most enjoyable and rewarding times have been when the stress level has been minimized. I feel like it's easier to perform well when the stress factor is low. As I've mentioned before, during my community theatre experience, the most successful directors have been those who did not transfer stress to the cast and crew. It's because they were talented and exuded the confidence that the show would open at a high quality.
That's where my outlook on the alien comes from. I have confidence in the caregivers that are working with me. They are skilled. They communicate with me in a way that is comfortable to me. We share humor back and forth. I recall one of the chemo nurses on the first day of chemo treatments picking on me about leaving the toilet seat up in the chemo room. She singled me out as I was the only male in the room at the time (I wasn't the guilty party, even though to this day she insists I was). She knew that was the way to break the ice with me and after that, I looked forward to going to chemo treatments.
None of us have any idea how many days are left for us. Some of us have events that make us stop and think about how we are going to chose to "live" those days. For some, the days come to an end much too soon. Even if we have been given a time line for when that final day might be, it doesn't excuse us from living the rest of those days. I have known people who have continued to "live" in spite of their diagnosis. They are my inspiration.
Once, during a visit with my oncologist, I told her that she never needed to worry about giving me a terminal diagnosis. I told her if we ever had that discussion, I would ask to be released from her care. As she looked puzzled, I explained that I would pack my things, tell the bank they now owned my house, get my passport and fly to Scotland. There, I would drink myself to death from overindulging in Scotch Whiskey (which I tasted once and thought it was the worst thing in the world). I explained to her that cancer will never be my cause of death. She was amused. That's why I like her.
We are here to live.
Continuing on yesterday's theme a little bit (tomorrow, I will get around to filling you in on some medical details from last Thursday's appt. and some new information from MCV). I've told several people that for a cancer patient to have a good outcome, the impact on the medical professionals involved must be like landing a big account (if you are in sales, like myself). There must be a sense of accomplishment that they feel. For them, however, the stakes are much larger.
With that said, as I look back on my career, I realize that the most enjoyable and rewarding times have been when the stress level has been minimized. I feel like it's easier to perform well when the stress factor is low. As I've mentioned before, during my community theatre experience, the most successful directors have been those who did not transfer stress to the cast and crew. It's because they were talented and exuded the confidence that the show would open at a high quality.
That's where my outlook on the alien comes from. I have confidence in the caregivers that are working with me. They are skilled. They communicate with me in a way that is comfortable to me. We share humor back and forth. I recall one of the chemo nurses on the first day of chemo treatments picking on me about leaving the toilet seat up in the chemo room. She singled me out as I was the only male in the room at the time (I wasn't the guilty party, even though to this day she insists I was). She knew that was the way to break the ice with me and after that, I looked forward to going to chemo treatments.
None of us have any idea how many days are left for us. Some of us have events that make us stop and think about how we are going to chose to "live" those days. For some, the days come to an end much too soon. Even if we have been given a time line for when that final day might be, it doesn't excuse us from living the rest of those days. I have known people who have continued to "live" in spite of their diagnosis. They are my inspiration.
Once, during a visit with my oncologist, I told her that she never needed to worry about giving me a terminal diagnosis. I told her if we ever had that discussion, I would ask to be released from her care. As she looked puzzled, I explained that I would pack my things, tell the bank they now owned my house, get my passport and fly to Scotland. There, I would drink myself to death from overindulging in Scotch Whiskey (which I tasted once and thought it was the worst thing in the world). I explained to her that cancer will never be my cause of death. She was amused. That's why I like her.
We are here to live.
Sunday, September 13, 2009
She's Right
Lisa made a comment on Friday's post about some cancer patients not having good outcomes in spite of a good attitude and putting up a good fight. It's a very insightful comment and she's correct.
I am most grateful for the miracles contained in the medicines that have been administered to me throughout the process. Even with my original diagnosis when the oncologist said my form of cancer was highly treatable and potentially curable, there were no assurances of any outcome. I have always recognized that there are others who have worse case scenarios and cancers than mine. I've heard the stories and have met several of those people in person. When I hear the stories, my heart goes out to them.
I have made the comment to several people that I believe when a person is diagnosed with cancer or any other catastrophic disease, and the person decides that they are going to "fight" the disease, the brain secretes a chemical to assist with the fight. When that chemical is discovered, I believe the cure for those diseases will be found.
I don't believe that disease has to be accepted as part of living, dying or God's plan. I believe God's plan is for man to continue research and find the cures. That's part of the whole "serving others" thing.
I don't know what is ahead. I'll find out some concrete things on November 5 after the next set of scans. For now, I can serve others by listening to their stories, keeping my head in the game so that the results and information I'm generating can add to an important part of a set of statistics.
When I was out walking in my neighborhood early one morning, I could feel the coolness of the seasonal change in the weather. It's my favorite time of year. Maybe it has something to do with the association with football season. As I was walking, I noticed that one of the houses had a garden out front in which they were growing melons. There were some that had formed and there were some blossoms indicating that some more melons were going to be formed. I thought about at how this point of the summer season, we recognize that most plants have passed their peak production of blooming or production of fruit. Yet, the melons still hadn't reached their potential. I then thought about how all seasons have a plant or two that are at their peak in that specific season.
To everything there is a season. Medical research is for all seasons. More tomorrow.
I am most grateful for the miracles contained in the medicines that have been administered to me throughout the process. Even with my original diagnosis when the oncologist said my form of cancer was highly treatable and potentially curable, there were no assurances of any outcome. I have always recognized that there are others who have worse case scenarios and cancers than mine. I've heard the stories and have met several of those people in person. When I hear the stories, my heart goes out to them.
I have made the comment to several people that I believe when a person is diagnosed with cancer or any other catastrophic disease, and the person decides that they are going to "fight" the disease, the brain secretes a chemical to assist with the fight. When that chemical is discovered, I believe the cure for those diseases will be found.
I don't believe that disease has to be accepted as part of living, dying or God's plan. I believe God's plan is for man to continue research and find the cures. That's part of the whole "serving others" thing.
I don't know what is ahead. I'll find out some concrete things on November 5 after the next set of scans. For now, I can serve others by listening to their stories, keeping my head in the game so that the results and information I'm generating can add to an important part of a set of statistics.
When I was out walking in my neighborhood early one morning, I could feel the coolness of the seasonal change in the weather. It's my favorite time of year. Maybe it has something to do with the association with football season. As I was walking, I noticed that one of the houses had a garden out front in which they were growing melons. There were some that had formed and there were some blossoms indicating that some more melons were going to be formed. I thought about at how this point of the summer season, we recognize that most plants have passed their peak production of blooming or production of fruit. Yet, the melons still hadn't reached their potential. I then thought about how all seasons have a plant or two that are at their peak in that specific season.
To everything there is a season. Medical research is for all seasons. More tomorrow.
Friday, September 11, 2009
Kind Of An Odd Day To Celebrate
Because of of the numbers 9/11, 2, 93, and 5 (i.e.Pentagon) that are associated with this day, it may seem a little odd that I am observing a bit of a celebration today. I am celebrating the number 50 as in day 50 of the 100 days of monitoring that follow the stem cell transplant. Halfway there!
My view on remembering sad occasions such as 9/11/01, passings of friends and family, tragic accidents, etc. is that grieving (not to be confused with mourning) is a vital part of the process. However, if a person stays in "grief-land," I'm concerned for them. One of the nurses at VA Cancer Institute said to me yesterday, "It was clear to all of us from Day 1 that you were not going to let your cancer beat you. You've had a good attitude the whole time." That was nice to hear from a pro. I had moments of grief early on and also during the process, but I haven't had any in awhile. Right now, it's more about moving on and some "what ifs" after the next set of scans which will be scheduled for November 2 and 3.
I see grief as a gift if it helps you stop in your tracks, assess the situation, and then move on with resolve as a result of processing that which made you grieve. I don't see moving on as denial or non-respect to the situation that made you grieve. I see it as honoring and carrying on the legacy that was left with you.
"Still, there's no denying that in some sense I 'feel better,' and with that comes at once a sort of shame, and a feeling that one is under a sort of obligation to cherish and foment and prolong one's unhappiness. I've read about that in books, but I never dreamed I should feel it myself, I'm sure H. wouldn't approve of it. She'd tell me not to be a fool. So I'm pretty certain, would God." "A Grief Observed" - C.S. Lewis
My view on remembering sad occasions such as 9/11/01, passings of friends and family, tragic accidents, etc. is that grieving (not to be confused with mourning) is a vital part of the process. However, if a person stays in "grief-land," I'm concerned for them. One of the nurses at VA Cancer Institute said to me yesterday, "It was clear to all of us from Day 1 that you were not going to let your cancer beat you. You've had a good attitude the whole time." That was nice to hear from a pro. I had moments of grief early on and also during the process, but I haven't had any in awhile. Right now, it's more about moving on and some "what ifs" after the next set of scans which will be scheduled for November 2 and 3.
I see grief as a gift if it helps you stop in your tracks, assess the situation, and then move on with resolve as a result of processing that which made you grieve. I don't see moving on as denial or non-respect to the situation that made you grieve. I see it as honoring and carrying on the legacy that was left with you.
"Still, there's no denying that in some sense I 'feel better,' and with that comes at once a sort of shame, and a feeling that one is under a sort of obligation to cherish and foment and prolong one's unhappiness. I've read about that in books, but I never dreamed I should feel it myself, I'm sure H. wouldn't approve of it. She'd tell me not to be a fool. So I'm pretty certain, would God." "A Grief Observed" - C.S. Lewis
Wednesday, September 9, 2009
"It's A Nice Day To...Start Again"
Back to my regular oncologist today. I'm pretty excited about it. Not to shun the good folks down at MCV, but going back to my regular doctor means progress, moving ahead and eventually, officially kicking the alien's butt.
Last week, the doctor at MCV recommended that I eat yogurt to build up some good bacteria in my system. I remember meeting yogurt sometime about 40 years ago. It was plain and did not have any flavoring. I didn't become a fan of it. Monday, a friend of mine purchased and brought 6 cups of flavored yogurt to my house. Included in the flavors was Key Lime. Ate it. Liked it. Today, I will try either the Boston Cream Pie or the Peach flavor. Me eating yogurt - big step. Me eating broccoli - not gonna happen.
"I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us as equals."
- Winston Churchill.
Last week, the doctor at MCV recommended that I eat yogurt to build up some good bacteria in my system. I remember meeting yogurt sometime about 40 years ago. It was plain and did not have any flavoring. I didn't become a fan of it. Monday, a friend of mine purchased and brought 6 cups of flavored yogurt to my house. Included in the flavors was Key Lime. Ate it. Liked it. Today, I will try either the Boston Cream Pie or the Peach flavor. Me eating yogurt - big step. Me eating broccoli - not gonna happen.
"I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us as equals."
- Winston Churchill.
Tuesday, September 8, 2009
A Day In The Life
Now I know how many holes it takes to fill Albert Hall. Have listened to that song for years and for some reason, that part of the lyric jumped out at me yesterday.
Was going through some old e-mails that I wrote last year while I was diagnosing myself and it was interesting, to say the least, to go through them. It's been quite the year and as I said to a friend last night, "Cancer aside, I've had a great year!"
What I mean is that I have had the chance to meet some amazing people that make me smile when I see them and hopefully I am able to return the favor. I have seen people at their best as they have helped me recover and kick some alien butt. I have learned how to respond to others who may be going through their own individual personal challenges. I have identified some potential volunteer opportunities for the future, targeting cancer patients.
An interesting note on those volunteer opportunities: I have talked to folks at both clinics about them and they made the comment that I wait awhile after the final scan and treatment and get back to "normal life" before I start offering myself as a volunteer. I think that is wise advice.
Was going through some old e-mails that I wrote last year while I was diagnosing myself and it was interesting, to say the least, to go through them. It's been quite the year and as I said to a friend last night, "Cancer aside, I've had a great year!"
What I mean is that I have had the chance to meet some amazing people that make me smile when I see them and hopefully I am able to return the favor. I have seen people at their best as they have helped me recover and kick some alien butt. I have learned how to respond to others who may be going through their own individual personal challenges. I have identified some potential volunteer opportunities for the future, targeting cancer patients.
An interesting note on those volunteer opportunities: I have talked to folks at both clinics about them and they made the comment that I wait awhile after the final scan and treatment and get back to "normal life" before I start offering myself as a volunteer. I think that is wise advice.
Even More Scary Than Swine Flu
Was watching TV yesterday and saw a "Snuggies" commercial. If you aren't aware of what the Snuggies product is, it is the blanket with sleeves product. The latest commercial shows people at a sporting event and at a movie theater while wearing a Snuggie. That just frightens me.
I'd like to think there is more creativity in America than that.
I'd like to think there is more creativity in America than that.
Sunday, September 6, 2009
How Do These Things Happen?
Two friends showed up yesterday afternoon. May not sound like all that big of a deal to you, but.... I knew one friend was coming over to visit and before she came over, she asked me if I needed anything from the store. As there were some things I needed, I gave her a small list. In addition, she brought along lunch and some fresh tomatoes out of her garden. I'm allowed to eat tomatoes, they just have to be washed really well.
While we were eating lunch, another friend showed up just to visit and also help with some chores around the house that needed done. I didn't have anyone set up to do those chores as it's still hard to ask people to help with stuff like that.
I have told several friends lately that I think too many people spend time hoping and looking for "burning bushes" in the world. What they are missing are miracles that are bigger than burning bushes. My opinion (and I have a few of those) is that if Moses had climbed the mountain and seen a burning bush along side of an internal combustion engine, the burning bush would have been small manna.
Yesterday, I saw two of what Moses never got to see.
"And that's good enough for me."
While we were eating lunch, another friend showed up just to visit and also help with some chores around the house that needed done. I didn't have anyone set up to do those chores as it's still hard to ask people to help with stuff like that.
I have told several friends lately that I think too many people spend time hoping and looking for "burning bushes" in the world. What they are missing are miracles that are bigger than burning bushes. My opinion (and I have a few of those) is that if Moses had climbed the mountain and seen a burning bush along side of an internal combustion engine, the burning bush would have been small manna.
Yesterday, I saw two of what Moses never got to see.
"And that's good enough for me."
Saturday, September 5, 2009
Somewhere Around Now
I know I've told this story in person and put it on the blog awhile back, so I apologize for repeating it.
About a year ago I made my last platelet donation. It was at that appt. when the person collecting my platelets noticed that my platelet count was low (yet adequate enough for collection of a single donation). She asked me what was going on with me physically as my platelets had been declining over the last couple of donations. I had no clue and asked her what would make them decline. She recommended that I see my doctor. I came home and consulted an Internet "doctor" and self diagnosed myself. You know how that turned out.
The point is to tell you that you shouldn't put off seeing a doctor if things ain't right. I'm proud of myself that I have pointed things out to the doctors since I was diagnosed that I may have just shaken off in the past. As there is discussion in America about people being denied health care because they can't afford it (and the issue needs to be addressed), there are likely more people who have access to health care that are denying it from themselves. That's a shame.
Friday, September 4, 2009
Today - Part 2
I am officially discharged from the folks at MCV. What it means is that I am going to be turned over to the care of my regular oncologist immediately. My appt. with her is next Thursday. It will be great to see the gang.
Restrictions are still in place as before, although I am now allowed to walk outside in non-large crowd areas without my mask. I still am not allowed to do cleaning, laundry, go to the grocery store, etc. and the doctor said that would probably be in place for another month or so. I'll continue to beg for help until then.
He also recommended that anybody with whom I am in regular contact, get their flu shots ASAP. As far as my flu shots, I am not ready to get them yet and probably it will be another month until my system would be able to "interact" with the shot to give me the protection that is intended by the shot.
I walked through the hospital today and thanked the folks I had encountered for their help. I won't be seeing them as often, but I will see them. Good people.
My next set of scans to see what is going on will be somewhere around Day 100 (end of October). Approximately one year after the initial diagnosis.
Overall, good progress and as I've told people, "I feel good right now and it's amazing to know that I'll feel even better in a month."
Today - Part 1
From Bo Baker's journal yesterday....Dr. Gold ......called us to reassure us this morning that Bo's scans were all clear. He is "free of the disease". GOOD STUFF! He gets his port removed on September 15.
This morning, I head down to MCV for their input on whether I will be discharged from them and if any restrictions will be lifted or not. The discharge part is what I'm hoping for. Anything else will be a bonus.
Will post later today with that information.
This morning, I head down to MCV for their input on whether I will be discharged from them and if any restrictions will be lifted or not. The discharge part is what I'm hoping for. Anything else will be a bonus.
Will post later today with that information.
Thursday, September 3, 2009
Betraying Friends
I was talking to two friends the other day who gave me rides to and from clinic appointments. I was telling them how I felt I betrayed them and everyone else who gave me rides when I drove myself to clinic on Tuesday of this week. I enjoyed having the chance to talk to them during the rides and catching up on what was going on with them.
Another set of friends came by last night with dinner and to help do some laundry. I was telling them about how hard it was to graciously accept the kindness of folks during this restriction time. They explained that it was their way of contributing to my recovery.
I had another discussion once about accepting kindness from others. The person on the other end of the discussion told me, "A gift not accepted is a blessing denied." I thought that was one of the most profound things I had heard.
A few years ago, when someone wanted to repay me for a gift or favor I did, I used the expression, "In the South, we just say Thank You," as may way of telling them that no repayment was necessary or expected.
I'm trying to learn how to not deny blessings here in the South.
Another set of friends came by last night with dinner and to help do some laundry. I was telling them about how hard it was to graciously accept the kindness of folks during this restriction time. They explained that it was their way of contributing to my recovery.
I had another discussion once about accepting kindness from others. The person on the other end of the discussion told me, "A gift not accepted is a blessing denied." I thought that was one of the most profound things I had heard.
A few years ago, when someone wanted to repay me for a gift or favor I did, I used the expression, "In the South, we just say Thank You," as may way of telling them that no repayment was necessary or expected.
I'm trying to learn how to not deny blessings here in the South.
Wednesday, September 2, 2009
It's Right In Front Of You
A friend of mine in North Carolina is hosting a German Foreign Exchange Student this year. He and his family are excited about her visit. He was telling me that he asked her if she liked bratwurst. Between his American and North Carolina accent, she was amused at his pronunciation of the word, bratwurst. He said she has since teased him (in a nice way) about the way he pronounces other German origin words. I asked him if she was speaking English most of the time. He confirmed that she was. I responded that if it were me when she was picking on my pronunciation of German origin words, I would pretty much snicker at just about every English word she pronounced. One that I suggested to him was to ask her how she pronounces "y'all" or maybe even Terrapin.
Another one of my friends was over last night to visit and also do some of my laundry. In spite of the fact that I have not done my own laundry since mid-July, it still pains me a little bit to have to count on someone to do it for me. I've adapted somewhat - knowing that the days of when I will be able to do my own laundry are rapidly approaching. While doing my laundry, my friend said to me, "If I ever am in the situation you are in, you will have to teach me how to accept this kindness with grace, as I think I would have a hard time accepting it also." Later on, as I thought about it, I think it's an easier task to accept the kindness when you understand the sacrifice that someone is making for you to help you with your chores. The pre-transplant coordinator at MCV told me in the early stages, when she could tell that I was a bit overwhelmed with all of the things that would need to be done for me, "It's OK Greg, you'll pay all of those favors forward someday." I told her that I probably wouldn't as I was that shallow.
There has been doubt and concern about outcomes of stuff as things have progressed since last October. The questions "What if," and "Is this normal," have been stated with regularity.
A lot of things have been right in front of me the whole time.
Another one of my friends was over last night to visit and also do some of my laundry. In spite of the fact that I have not done my own laundry since mid-July, it still pains me a little bit to have to count on someone to do it for me. I've adapted somewhat - knowing that the days of when I will be able to do my own laundry are rapidly approaching. While doing my laundry, my friend said to me, "If I ever am in the situation you are in, you will have to teach me how to accept this kindness with grace, as I think I would have a hard time accepting it also." Later on, as I thought about it, I think it's an easier task to accept the kindness when you understand the sacrifice that someone is making for you to help you with your chores. The pre-transplant coordinator at MCV told me in the early stages, when she could tell that I was a bit overwhelmed with all of the things that would need to be done for me, "It's OK Greg, you'll pay all of those favors forward someday." I told her that I probably wouldn't as I was that shallow.
There has been doubt and concern about outcomes of stuff as things have progressed since last October. The questions "What if," and "Is this normal," have been stated with regularity.
A lot of things have been right in front of me the whole time.
Tuesday, September 1, 2009
Nicely, Nicely, Thank You
Back from today's clinic visit. I actually drove myself to that visit. It's the farthest I've driven in my car since July 15.
Counts are climbing and they say I am doing well. Platelet counts busted through three digits for the first time in ages. The low end of the "normal" range is 140 and today I was at 104. I haven't had to have an infusion of anything since the first week after I was released from the hospital. Clinic visits have been show up, get blood drawn, wait for results, review and go home. I did talk to a clinic oncology fellow today about a slight pain I had been feeling in the tip of my shoulder. I had read some info about how it could be a sign of body organ enlargment, or other potentially troublesome issues. We discussed the severity of the pain, it's location, etc. and she came to the conclusion that it may be a touch of arthritis. I considered that good news.
Today, while I waited, I went to visit some of my friends from upstairs (clinic is on the 7th floor and my hospital stay was on the 10th floor). The room I was in while there was empty. I don't think they have been able to exorcise it from the demons I left behind. It was good to see my friends from up there. They are good people.
My next appointment is Friday. I will meet with a doctor that day and discuss being discharged from MCV's care and back to my regular oncologist. Hoo-hah! I'm pretty fired up (in a good way) about that visit.
"Feel the city breakin'
And ev'rybody shakin'
And we're stayin' alive, stayin' alive." - Bee Gees
Counts are climbing and they say I am doing well. Platelet counts busted through three digits for the first time in ages. The low end of the "normal" range is 140 and today I was at 104. I haven't had to have an infusion of anything since the first week after I was released from the hospital. Clinic visits have been show up, get blood drawn, wait for results, review and go home. I did talk to a clinic oncology fellow today about a slight pain I had been feeling in the tip of my shoulder. I had read some info about how it could be a sign of body organ enlargment, or other potentially troublesome issues. We discussed the severity of the pain, it's location, etc. and she came to the conclusion that it may be a touch of arthritis. I considered that good news.
Today, while I waited, I went to visit some of my friends from upstairs (clinic is on the 7th floor and my hospital stay was on the 10th floor). The room I was in while there was empty. I don't think they have been able to exorcise it from the demons I left behind. It was good to see my friends from up there. They are good people.
My next appointment is Friday. I will meet with a doctor that day and discuss being discharged from MCV's care and back to my regular oncologist. Hoo-hah! I'm pretty fired up (in a good way) about that visit.
"Feel the city breakin'
And ev'rybody shakin'
And we're stayin' alive, stayin' alive." - Bee Gees
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