The fact that I can rely on a number of good friends to get me to and from treatment is miraculous. Finished putting on my SPF 55 sun screen, put my mouthpiece in my pocket, opened the garage door, and my ride showed...right on time. Never a doubt, not hint of doubt. People have become more reliable over time. There is a consistency today that I was unable to provide as a young man. A better offer would present itself, and I would start the process of finding an excuse, or an alibi.
The door swings both ways today and I know that given the opportunity, I would be delighted to inconvenience myself for my friends. It is a privilege to serve our fellows. Outreach keeps us connected, and human.
The Doctor wants me to wear a hat to help mitigate the affect of the sun on my face, and neck, and upper body. So I wear a very stylish baseball hat which apparently does not fit the Doctors criteria. He said he wants something bigger. I ask if he's talking about sombrero big, or 10 gallon big, fedora big, pork pie big....What are we talking about here Doc? We settled on a tasteful straw hat to start, if that doesn't work then we go to rice patty ridiculous. God help me. I've got hat problems, go figure.
See you next time,
TJH
Today's Playlist:
Wednesday, July 13, 2011
Tuesday, July 12, 2011
Of course I feel fine...Honey I need to lay down 7/12/11
Monday,Not a cloud in the sky, let's do this thing. Radiation machine needs to be re-calibrated, no problem, let's get me some Erbitux. Sure I can handle a double, what do you think I am a lightweight? No problem go ahead and access my port. Sure some benadryl is fine. Three hours of Erbitux seems a little excessive, but if this is protocol, I'm game. I'll just listen to the classical selection in my ipod. Beth is reading her Kindle, and checking to make sure that I am still breathing. I guess I nodded off. The good news is that I did not manifest any of those awful side effects. Never read too far into the side effects section.
We finished the Erbitux w/ out incident, and went about our day. Got the call on the bat phone that the radiator was working, and would I still want a test drive. Would I? Please. This is what I have been preparing for my entire life. I am ready. Let's heat this mother up. Lay quietly for 20 minutes, no problem, but you have got to get rid of the country music, clearly a deal-breaker. They finally acquiesced. I think they are getting the hang of this. Did my 20 minutes and was released back into the wild.
I should have suspected something was amiss, when on the way home I had a craving for hummus, and pita. Radiation, and Erbitux have some subtle signs that I need to be vigilant in my awareness. Day one is a tricky day. Made it home without incident, sat down for an uplifting blogfest, and got hammered. The bus was not a bus it was a bulldozer, and it drove right over my optimistic ass. I mumbled to Beth that I think I might want to lay down for a little nap at 5pm. I woke up at 6am, not knowing who I was, or where I came from. My legs were gone, and I wanted no part of any further daily treatments.
Day 2 was welcomed w/ a groggy knowledge that I was expected at radiation at 9am, then 2 Doctors appointments at 9:45, and 11:30. Who schedules this stuff? The Gods were smiling. The radiation machine was on the fritz again, and the 11:30 was rescheduled. I think someone found a way to sabotage the radiator. Good for them. If I could get the 9:45 to cancel, it would be like hitting the lottery.
Beth is awake, and I give her the good news. She immediately goes to some drastic plan B. We had 2 doctors appointments by 11am, came home had a bite to eat, and the blooming bat phone rang again. Guess what we have an opening, can you be here in 10 minutes? Of course, this is what I live for, where is my mouthpiece? The classical music was playing when I entered the vault. We(the techs) had some adjustments to make with my positioning. While I was attached to the table like Gulliver, these guys decided to draw on me like I was passed out at a frat party. I've got some permanent magic marker on my throat and neck. I know it's permanent, because of the contact high from the fumes. They are explaining that this is normal, and do I feel any discomfort? My head is bolted to this table, and I have a mouthpiece in which really prevents any discernible conversation. I tell them that I would prefer that they not mark on my body, that I have made it 53 years w/out the need to be tattooed. I know that the machine if working properly would not require this type of savagery. They hear ngthy plshh dggr, and assure me that this is OK.
I was released back into the wild at about 1:30 feeling somewhat soiled, but there was a sense of survival. Let's see what tomorrow brings.
Had a great night w/ Beth and friends. Too numerous to mention. Thank's for the phone calls and emails, and I would like to prominently mention Daniel Silas Miller.
Thanks again,
TJH
Today's Playlist:
We finished the Erbitux w/ out incident, and went about our day. Got the call on the bat phone that the radiator was working, and would I still want a test drive. Would I? Please. This is what I have been preparing for my entire life. I am ready. Let's heat this mother up. Lay quietly for 20 minutes, no problem, but you have got to get rid of the country music, clearly a deal-breaker. They finally acquiesced. I think they are getting the hang of this. Did my 20 minutes and was released back into the wild.
I should have suspected something was amiss, when on the way home I had a craving for hummus, and pita. Radiation, and Erbitux have some subtle signs that I need to be vigilant in my awareness. Day one is a tricky day. Made it home without incident, sat down for an uplifting blogfest, and got hammered. The bus was not a bus it was a bulldozer, and it drove right over my optimistic ass. I mumbled to Beth that I think I might want to lay down for a little nap at 5pm. I woke up at 6am, not knowing who I was, or where I came from. My legs were gone, and I wanted no part of any further daily treatments.
Day 2 was welcomed w/ a groggy knowledge that I was expected at radiation at 9am, then 2 Doctors appointments at 9:45, and 11:30. Who schedules this stuff? The Gods were smiling. The radiation machine was on the fritz again, and the 11:30 was rescheduled. I think someone found a way to sabotage the radiator. Good for them. If I could get the 9:45 to cancel, it would be like hitting the lottery.
Beth is awake, and I give her the good news. She immediately goes to some drastic plan B. We had 2 doctors appointments by 11am, came home had a bite to eat, and the blooming bat phone rang again. Guess what we have an opening, can you be here in 10 minutes? Of course, this is what I live for, where is my mouthpiece? The classical music was playing when I entered the vault. We(the techs) had some adjustments to make with my positioning. While I was attached to the table like Gulliver, these guys decided to draw on me like I was passed out at a frat party. I've got some permanent magic marker on my throat and neck. I know it's permanent, because of the contact high from the fumes. They are explaining that this is normal, and do I feel any discomfort? My head is bolted to this table, and I have a mouthpiece in which really prevents any discernible conversation. I tell them that I would prefer that they not mark on my body, that I have made it 53 years w/out the need to be tattooed. I know that the machine if working properly would not require this type of savagery. They hear ngthy plshh dggr, and assure me that this is OK.
I was released back into the wild at about 1:30 feeling somewhat soiled, but there was a sense of survival. Let's see what tomorrow brings.
Had a great night w/ Beth and friends. Too numerous to mention. Thank's for the phone calls and emails, and I would like to prominently mention Daniel Silas Miller.
Thanks again,
TJH
Today's Playlist:
Monday, July 11, 2011
There is a Window 7/11/11
NASA just called and the national weather service cleared me for treatment if I can be ready to launch at 3:30pm. I'm ready now. Let's go. Where's my mouthpiece? What side effects from the Erbitux?. Wheres my chinstrap? I'm ready.
Honey, is it OK for me to go on the shuttle? YiPee! I get to go for radiation. Am I the first contestant since the radiator was replaced? Hmm. That's probably good luck in radiation. They called me because I brought them candy. Who cares why they called, I got called.
Cover me, I'm going in!
Stay Tuned
TJH
Michael Myers?
Today's Playlist:
Honey, is it OK for me to go on the shuttle? YiPee! I get to go for radiation. Am I the first contestant since the radiator was replaced? Hmm. That's probably good luck in radiation. They called me because I brought them candy. Who cares why they called, I got called.
Cover me, I'm going in!
Stay Tuned
TJH
Michael Myers?
Today's Playlist:
Hold On 7/11/11
Well I can only imagine how an astronaut feels when they get all dressed up for a launch, only to have some weatherman scrub their mission. The weatherman called me this morning to scrub my 9am radiation appointment. The storm that passed through Phoenix last night caused some glitch in the matrix, which requires some form of recalibration.
I have all my stuff ready to go. I have my #2 pencils, my bookbag, my snacks, my gifts for the teachers....What no school?
I can handle the delay, I still get to get hooked up to the Erbitux machine at 9:45. After the Erbitux I can scoot downstairs and see if the radiator is repaired. If I do get a snow day as respects radiation today, I'm on for tomorrow morning at 9am.
I remain prepared to get my medicine. I'm kind of disappointed that I have to wait to throw the facemask on, put the mouthpiece in, and bolt down.
Lot's of activity before my shuttle mission. We have all the providers calling to confirm protocol. Checklists are being checked. I am remaining calm and avoiding any controversy. This stuff is going down exactly as it is intended. Just like my Emsure...Yum.
I'll keep you informed...Mission Control...OUT
TJH
I have all my stuff ready to go. I have my #2 pencils, my bookbag, my snacks, my gifts for the teachers....What no school?
I can handle the delay, I still get to get hooked up to the Erbitux machine at 9:45. After the Erbitux I can scoot downstairs and see if the radiator is repaired. If I do get a snow day as respects radiation today, I'm on for tomorrow morning at 9am.
I remain prepared to get my medicine. I'm kind of disappointed that I have to wait to throw the facemask on, put the mouthpiece in, and bolt down.
Lot's of activity before my shuttle mission. We have all the providers calling to confirm protocol. Checklists are being checked. I am remaining calm and avoiding any controversy. This stuff is going down exactly as it is intended. Just like my Emsure...Yum.
I'll keep you informed...Mission Control...OUT
TJH
Thursday, July 7, 2011
Girdles & Haboobs 7/7/11
The main trouble post surgery's is sleep. The anesthesia messes w/ your sleep, the tubes hanging out your gullet are not conducive to sleep. There is the normal terror that hinders sleep. You get half asleep and you feel a gentle, but disturbing tug on your feeding tube. It has a mind of its own. It really wants to be ripped out in the middle of the night emptying stomach content. I sleep in a tasteful short sleeve button down, to keep my feeding tube from tying itself to my hand, and spontaneously unplugging. The button down does not like the neck and shoulder.
The main culprit remains the neck dissection. All those nerves had to be lifted, and cleaned during the surgery. That's all well and good, however when they put them back, they should have re-synched them with my central nervous system. I have screaming pins & needles from above my left haboob over the back of my shoulder, and up from mid left tricep through my throat, left jawline, above my ear, into my scalp. No problem, except when you gently touch my left shoulder there is a tendency for me to leap out of my skin. I asked the Doc....Aayy what's up Doc? "Your neurological adjustment period should take about 2 years." "There may be some permanent nerve damage, but it should be minimal". 2 years, that seems like a really long time. Is there anything I can do say between now and 2 years from now to minimize the effect? There are some medications for seizures that they have found are having some positive mitigating effects. That's all I need, an anti seizure med that also may help nerve health. I'm just not ready for trial offers. Let's see how bad it gets. I'm a solution oriented guy. We head to Walgreens.
I had my first full uninterrupted night of sleep last night. I picked up an ace bandage that fits around my abdomen, covering, and securing the feeding tube. It velcro's in place, just under the aforementioned haboobs. It goes nowhere near my neck. It is a girdle, and I love it.
Went back to the lawyer w/ Beth today, being of sound mind & body. We scratched out some legal concerns, plopped some stuff in the trust, and went to lunch at Durant's on Central. I used to think that most of this stuff was unimportant, but I was wrong. I must admit that my motivation for getting the estate in order was probably fear. If something(God forbid) were to happen to me, I would want Beth to be very sad. If I left my stuff disorganized, and tornado-like, Beth would be sad and angry. I don't mind people being sad, but I would hate to leave them angry.
No fresh music today, but I did receive a new cd in the mail today from a dear family member. I am going to download it as soon as I finish this drivel. The cd is titled "Zamru Ladonai". I'll sample it and forward a selection or two.
See you around the campus,
Love,
TJH
The main culprit remains the neck dissection. All those nerves had to be lifted, and cleaned during the surgery. That's all well and good, however when they put them back, they should have re-synched them with my central nervous system. I have screaming pins & needles from above my left haboob over the back of my shoulder, and up from mid left tricep through my throat, left jawline, above my ear, into my scalp. No problem, except when you gently touch my left shoulder there is a tendency for me to leap out of my skin. I asked the Doc....Aayy what's up Doc? "Your neurological adjustment period should take about 2 years." "There may be some permanent nerve damage, but it should be minimal". 2 years, that seems like a really long time. Is there anything I can do say between now and 2 years from now to minimize the effect? There are some medications for seizures that they have found are having some positive mitigating effects. That's all I need, an anti seizure med that also may help nerve health. I'm just not ready for trial offers. Let's see how bad it gets. I'm a solution oriented guy. We head to Walgreens.
I had my first full uninterrupted night of sleep last night. I picked up an ace bandage that fits around my abdomen, covering, and securing the feeding tube. It velcro's in place, just under the aforementioned haboobs. It goes nowhere near my neck. It is a girdle, and I love it.
Went back to the lawyer w/ Beth today, being of sound mind & body. We scratched out some legal concerns, plopped some stuff in the trust, and went to lunch at Durant's on Central. I used to think that most of this stuff was unimportant, but I was wrong. I must admit that my motivation for getting the estate in order was probably fear. If something(God forbid) were to happen to me, I would want Beth to be very sad. If I left my stuff disorganized, and tornado-like, Beth would be sad and angry. I don't mind people being sad, but I would hate to leave them angry.
No fresh music today, but I did receive a new cd in the mail today from a dear family member. I am going to download it as soon as I finish this drivel. The cd is titled "Zamru Ladonai". I'll sample it and forward a selection or two.
See you around the campus,
Love,
TJH
Sunday, July 3, 2011
I'm well into my 54th year of life.7/3/11
As I contemplate all of the wonderful birthday wishes I received, I can't help thinking a little bit about gratitude. Now many of you who know me are aware that I have always said that gratitude should be seen and not heard. Don't tell me your grateful, show me. An adverb, not an adjective. Here are some random observations, please don't be offended. You can make your own lists.
I'd like to thank whoever came up with the Big Bang. That was just bloody brilliant. Partially because it was not big, and did not make noise.
The immutable laws of nature. If i can exist without rubbing too hard against these, I'm in good shape. I especially want to put in a plug for gravity, which has been better since I've given up snow skiing. I also love the laws of optics. I find sight remarkable, and all the colors.
The music, and lyrics. They somehow seem to go together so well. From Beethoven, to Rage Against the Machine. I appreciate the music of life.
The little things, microorganisms, and cells, without which there would be no life. I hope that Erbatux, and radiation can kill the little cancer microbastards that have set up shop in my throat.
The spotted owl, and baby seal...F the spotted owl and baby seal. There i said it. While I'm at it let me put in a plug for Global/regional warming. I don't like the cold weather. Gimme a/c and 110 over 3 feet of snow every day. And screw Congress, and most of our political representatives, Spineless amoebas (is that redundant?) who need term limits and public health insurance. OOPS i digress.
Did I mention the sun, and the stars?
The human element has made all the difference in my life. I've enjoyed music, and nature. The shooting stars, and sunsets (The sun does not actually set. It is stationary in our solar system, and we rotate on our axis, and around the sun). It has been the people who have given these experiences depth, and weight. The people who have shown me how to appreciate our environment. The people who have added love to the equation. The people who have taught me that smiling is a really inexpensive way to improve my looks. The people who gave me the latitude to laugh out loud (sometimes in seemingly inappropriate places). The people who have inspired, and redeemed me. The people who have shown me what God looks like, and how he would like me to behave. The people who I hurt, and disappointed, who have forgiven me. The people who have raised me up instead of putting me down, or worse, throwing me away to be ignored.
You know who you are, and I thank you. I had a very Happy Birthday.
I'd like to thank whoever came up with the Big Bang. That was just bloody brilliant. Partially because it was not big, and did not make noise.
The immutable laws of nature. If i can exist without rubbing too hard against these, I'm in good shape. I especially want to put in a plug for gravity, which has been better since I've given up snow skiing. I also love the laws of optics. I find sight remarkable, and all the colors.
The little things, microorganisms, and cells, without which there would be no life. I hope that Erbatux, and radiation can kill the little cancer microbastards that have set up shop in my throat.
The spotted owl, and baby seal...F the spotted owl and baby seal. There i said it. While I'm at it let me put in a plug for Global/regional warming. I don't like the cold weather. Gimme a/c and 110 over 3 feet of snow every day. And screw Congress, and most of our political representatives, Spineless amoebas (is that redundant?) who need term limits and public health insurance. OOPS i digress.
Did I mention the sun, and the stars?
The human element has made all the difference in my life. I've enjoyed music, and nature. The shooting stars, and sunsets (The sun does not actually set. It is stationary in our solar system, and we rotate on our axis, and around the sun). It has been the people who have given these experiences depth, and weight. The people who have shown me how to appreciate our environment. The people who have added love to the equation. The people who have taught me that smiling is a really inexpensive way to improve my looks. The people who gave me the latitude to laugh out loud (sometimes in seemingly inappropriate places). The people who have inspired, and redeemed me. The people who have shown me what God looks like, and how he would like me to behave. The people who I hurt, and disappointed, who have forgiven me. The people who have raised me up instead of putting me down, or worse, throwing me away to be ignored.
You know who you are, and I thank you. I had a very Happy Birthday.
Saturday, July 2, 2011
Willingness
"So I've been thinking". Probably not the sanest thing to say at the start of any conversation, however that is what I've been doing. My mind tends to fly untethered, I hope my typers can keep up.
I met a 10 year old named Lenny this week at the Gilbert Mercy Hospital. He was taking up a significant portion of an already overcrowded waiting room. I initially thought about tuning him up and getting his mom to corral him, but I did not act on my first thought. "I asked him what he was in for". He was wearing pajamas, and a red wristband, so I knew he was not support personnel, and he was 10. He said tonsils, and my attitude changed 180 degrees. I almost cried. I had my tonsils removed a month ago, and the pathology report confirmed that my tonsils(the left tonsilar pillar) was the point of origin for my cancer.
Lenny was somewhat interested to find out that I had just survived a surgery, he was facing. His attitude shifted, and he offered to let us share the couch. We joined him, and I assured him that getting the tonsils out was a very good thing. I wish every 10 year old had their tonsils removed. I strongly recommended the chicken broth ahead of the Italian ices, or flipping pudding. The ices are like swallowing broken glass, which I have done(light bulbs in a prior life, not sober). The puddings coagulate at the back of your throat and cause debilitating pain as you attempt to process, like peanut butter on the roof of your mouth. Lenny seemed to be paying attention, and then they called his number. He lost a little of his bravery, but he got up, and met his mom for the walk to the prep room.
I loose a little of my bravery on a regular basis. Each of the last 4 weeks I have undergone some surgical procedure at a hospital. General anesthesia is not my idea of a fun day. As the day of surgery arrives I tell Beth, "I'm not going". She typically says OK, as I get up say my prayers, make my bed, brush my teeth, and take a shower. When I put my "big boy" pants on, I have what is needed to get in the car. "Get in the car". Four of the most important words I have ever heard. I heard those words so often at one point in my life that I thought it was my nickname. I am usually willing. Willingness is probably the greatest gift I have ever received. You can't make someone willing, and you can't teach willingness. It comes from a sense of desperation, or a strong character. In my case it was the desperation.
I saw Lenny in the prep room prior to my surgery. We bumped knuckles. Very human. His mom wasn't sure what to make out of the exchange, but smiled. I had a port put in that day, but the real experience had nothing to do with surgery. Can I allow a shift in my attitude? Can I open myself up to the possibility that a greater purpose is unfolding, with wonderful experiences?
Willingness: This is an indispensable essential for recovery:
I'm still on my feet...TJH
I met a 10 year old named Lenny this week at the Gilbert Mercy Hospital. He was taking up a significant portion of an already overcrowded waiting room. I initially thought about tuning him up and getting his mom to corral him, but I did not act on my first thought. "I asked him what he was in for". He was wearing pajamas, and a red wristband, so I knew he was not support personnel, and he was 10. He said tonsils, and my attitude changed 180 degrees. I almost cried. I had my tonsils removed a month ago, and the pathology report confirmed that my tonsils(the left tonsilar pillar) was the point of origin for my cancer.
Lenny was somewhat interested to find out that I had just survived a surgery, he was facing. His attitude shifted, and he offered to let us share the couch. We joined him, and I assured him that getting the tonsils out was a very good thing. I wish every 10 year old had their tonsils removed. I strongly recommended the chicken broth ahead of the Italian ices, or flipping pudding. The ices are like swallowing broken glass, which I have done(light bulbs in a prior life, not sober). The puddings coagulate at the back of your throat and cause debilitating pain as you attempt to process, like peanut butter on the roof of your mouth. Lenny seemed to be paying attention, and then they called his number. He lost a little of his bravery, but he got up, and met his mom for the walk to the prep room.
I loose a little of my bravery on a regular basis. Each of the last 4 weeks I have undergone some surgical procedure at a hospital. General anesthesia is not my idea of a fun day. As the day of surgery arrives I tell Beth, "I'm not going". She typically says OK, as I get up say my prayers, make my bed, brush my teeth, and take a shower. When I put my "big boy" pants on, I have what is needed to get in the car. "Get in the car". Four of the most important words I have ever heard. I heard those words so often at one point in my life that I thought it was my nickname. I am usually willing. Willingness is probably the greatest gift I have ever received. You can't make someone willing, and you can't teach willingness. It comes from a sense of desperation, or a strong character. In my case it was the desperation.
I saw Lenny in the prep room prior to my surgery. We bumped knuckles. Very human. His mom wasn't sure what to make out of the exchange, but smiled. I had a port put in that day, but the real experience had nothing to do with surgery. Can I allow a shift in my attitude? Can I open myself up to the possibility that a greater purpose is unfolding, with wonderful experiences?
Willingness: This is an indispensable essential for recovery:
I'm still on my feet...TJH
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