It is just about as official as it can get. It has been a full year since my first trip to the chemo store downtown. At the time, I was pretty anxious about the end result and can remember telling Angie that my long-term goal was to see Hudson turn 8. Looking back, it seems overly dramatic but at the time, it seemed so far away.
Physically I am doing pretty good. I have had two follow up PET scans to "re-stage" and both have turned up with no significant activity. The mass size has been reduced by about half of what it was but it is still hanging out. I am told that it is likely just scar tissue. The upside is that it's mine to keep!
I have been in a pretty good mental spot as well. Everything seems to feel normal but I can't help but to reflect, or somehow be reminded of what a rough patch we were in a year ago. I continue to have odd dreams every once in a while. The most recent one was last Wednesday night. I was dreaming that I was scheduled for a PET scan and when I arrived at the hospital, I found that it was overflowing with people. The hospital had decided to line up hundreds of recliners outside between two buildings for PET prep. I somehow got lost and ended up finding where everything was after everyone had left. I sat and waited for my turn but it never came. It was a setback as I was suspicious that I had relapsed but couldn't confirm one way or the other.
The next re-stage is the first week in January.
Monday, December 2, 2013
Tuesday, May 7, 2013
#24 - Merrell Out,,,,,,****Mic Drop******* Feedback
On April 19th, 2013 Angie and I made our last trip to MDA for radiation therapy. I struggle using the word last, for fear that I somehow jinx myself and have to make a return trip. I'm not necessarily one for superstition, but at the same time, I don't want to pretend like I can wash my hands of this and move on without a care. There is a reason I will continue to have pet scans every three months for the next two years, and every 6 months for 3 years following that. My guess is that if all goes well over the next 5 years, that I will be more confident and more likely to celebrate.
Well that was a great start to a Celebration post! The last treatment was a very odd feeling. It was something that I had marked on every calendar that I own. It was a day that I had thought about while laying in the hospital bed hooked up to the chemo drugs. (which I can now type without waves of nausea) In the end it was somewhat anti-climatic but satisfying. During the last check up prior to the treatment, the doctor informed me that although my treatments were over, that the side effects would increase with severity over the course of the next week to 10 days.
The treatment itself was by the book. The only difference was that at the end of the treatment, I was given an opportunity to ring the bell. I wasn't all that excited to ring the bell but I believe Angie was looking forward to doing something that marked the end. After a hearty bell ringing we took a couple of pictures with the radiation staff and went to find my favorite valet of all time. Again, I'm not entirely sure of everything she said but I knew exactly what the tears in her eyes meant when I told her it was my last day. Who would have guessed that most personal connection I would make during my adventure at MDA would be the valet. Of all the lessons learned, this lesson of empathy, and genuine love for me, the stranger, probably has more applicability moving forward than any other.
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Next up: Port Removal & Normalcy?
Well that was a great start to a Celebration post! The last treatment was a very odd feeling. It was something that I had marked on every calendar that I own. It was a day that I had thought about while laying in the hospital bed hooked up to the chemo drugs. (which I can now type without waves of nausea) In the end it was somewhat anti-climatic but satisfying. During the last check up prior to the treatment, the doctor informed me that although my treatments were over, that the side effects would increase with severity over the course of the next week to 10 days.
The treatment itself was by the book. The only difference was that at the end of the treatment, I was given an opportunity to ring the bell. I wasn't all that excited to ring the bell but I believe Angie was looking forward to doing something that marked the end. After a hearty bell ringing we took a couple of pictures with the radiation staff and went to find my favorite valet of all time. Again, I'm not entirely sure of everything she said but I knew exactly what the tears in her eyes meant when I told her it was my last day. Who would have guessed that most personal connection I would make during my adventure at MDA would be the valet. Of all the lessons learned, this lesson of empathy, and genuine love for me, the stranger, probably has more applicability moving forward than any other.
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| Nearly unbridled excitement to ring "The Bell" |
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| Radiation staff that put up with me for a month. |
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| The best parking valet of all time. Made me smile every day. |
To the wounded and the weary
I would show a gentle heart.
Next up: Port Removal & Normalcy?
Thursday, April 18, 2013
#23 - #24
I have completed 24 of 25 radiation treatments. I think I am doing fine but to be honest, it has been a long time since I have been 100% so its a little difficult to judge. Relative to a couple of months ago I am doing great.
Radiation therapy is a little bit of a trip. Unfortunately, it requires actual daily trips to the hospital for a short 15 minute treatment. The actual logistics of leaving work in the middle of work, fighting traffic both ways and then arriving at home feeling quite literally blasted has become quite tiresome. MDA has spent quite a bit of time and planning making it as convenient as possible for those getting daily treatments. The treatment center at the Mays Clinic is on the first floor just steps away from the free valet parking. They have staffed their valet positions with a few of what I would consider greeters. One in particular has made my day a little better every time I have arrived. I'm not entirely sure what she is saying due to a pretty hardy accent but it is along the lines are you better today? You look better today! This is going to be a great day for you! God Bless! The lines are delivered with such a high level of energy, a smile, and who couldn't smile at the thick accent? I assumed that it was a common line and that I was a number until the first Friday when I got a treatment several hours earlier than my regular 3:15 schedule. The greeter said something along the lines of "You are here early, you must be excited to get better today! Are you excited to get better today??" MDA has no idea what she is worth to them.
I usually leave work at 2:30 to make my 3:15. After dropping the car and checking in, I usually don't have to wait more than 5-10 minutes. They have a waiting area that comes equipped with screens that you typically see at airports letting you know if you have cleared the stand by list or the like. Your initials, your appointment time, and your check in time are there and it shows where you are at on their schedule. It is pretty slick. After getting called back, I hop up on the table, put my legs into my custom mold and pull my shirt up and scoot my pants down a bit. There are usually three techs working on getting my tattoos / sharpie marks lined up with lasers that are mounted on the walls and ceiling. Once I am lined up, they hand me a bar to hold onto with both hands to keep them out of the way over my chest and leave the room. The particle accelerator starts to hum and starts treating/zapping/cooking/accelerating/bombarding/hurling subatomic particles my direction. The table I lay on is cantilevered out over a space where the accelerator can rotate around my body. It makes 7 different stops and focuses on the same spot from different angles. Each stop takes about 30 seconds with a couple of short stops for about 20. The lens or the opening of the equipment has a number of very small fingers that adjust to hit the same spot from the different angles. I can't say that I feel any pain at the time but my stomach definitely reacts and starts growling and rolling. I guess it could be the 6 hour fast prior to treatment but it happens almost every time. I usually get super tired between the treatment and arriving at home. Some of the other side effects have been hit and miss.
Parting Shots:
Radiation therapy is a little bit of a trip. Unfortunately, it requires actual daily trips to the hospital for a short 15 minute treatment. The actual logistics of leaving work in the middle of work, fighting traffic both ways and then arriving at home feeling quite literally blasted has become quite tiresome. MDA has spent quite a bit of time and planning making it as convenient as possible for those getting daily treatments. The treatment center at the Mays Clinic is on the first floor just steps away from the free valet parking. They have staffed their valet positions with a few of what I would consider greeters. One in particular has made my day a little better every time I have arrived. I'm not entirely sure what she is saying due to a pretty hardy accent but it is along the lines are you better today? You look better today! This is going to be a great day for you! God Bless! The lines are delivered with such a high level of energy, a smile, and who couldn't smile at the thick accent? I assumed that it was a common line and that I was a number until the first Friday when I got a treatment several hours earlier than my regular 3:15 schedule. The greeter said something along the lines of "You are here early, you must be excited to get better today! Are you excited to get better today??" MDA has no idea what she is worth to them.
I usually leave work at 2:30 to make my 3:15. After dropping the car and checking in, I usually don't have to wait more than 5-10 minutes. They have a waiting area that comes equipped with screens that you typically see at airports letting you know if you have cleared the stand by list or the like. Your initials, your appointment time, and your check in time are there and it shows where you are at on their schedule. It is pretty slick. After getting called back, I hop up on the table, put my legs into my custom mold and pull my shirt up and scoot my pants down a bit. There are usually three techs working on getting my tattoos / sharpie marks lined up with lasers that are mounted on the walls and ceiling. Once I am lined up, they hand me a bar to hold onto with both hands to keep them out of the way over my chest and leave the room. The particle accelerator starts to hum and starts treating/zapping/cooking/accelerating/bombarding/hurling subatomic particles my direction. The table I lay on is cantilevered out over a space where the accelerator can rotate around my body. It makes 7 different stops and focuses on the same spot from different angles. Each stop takes about 30 seconds with a couple of short stops for about 20. The lens or the opening of the equipment has a number of very small fingers that adjust to hit the same spot from the different angles. I can't say that I feel any pain at the time but my stomach definitely reacts and starts growling and rolling. I guess it could be the 6 hour fast prior to treatment but it happens almost every time. I usually get super tired between the treatment and arriving at home. Some of the other side effects have been hit and miss.
- Damage to the bowels, causing diarrhea. I believe the medical term is "Loose Bowels".
- Memory Loss - I can't remember what I was trying to forget. (Cue Dirty Day)
- Infertility - we haven't had any kids in the last 30 days so this one is probably confirmed.
- Reddened skin - I'm not sure if this would be a reference to a sun burn or all the red sharpie ink but either way, yes.
I am looking forward to my last treatment. Every time I stop to think about it, I can't help but to smile and have a small allergic reaction.
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| Unit #5 |
Parting Shots:
- My hair is making a slow comeback
- There has been so many neat moments, so many people have blessed our lives. The meals keep getting delivered to our house. It has been humbling to be at the receiving end of so much service and kindness. Angie and I count our blessings each day, many of them have names and reside here in Katy.
Monday, April 1, 2013
#22 - Speed Racer
One of the quick checks that the physicians like to do before starting radiation in the abdomen is a kidney function test. Apparently I will also be subjected to another function test after radiation and we will be able to determine if there was any kidney damage during treatment. I'm not entirely sure why we are doing it. In my opinion, it is what it is. If we have to do the rad therapy, you just take what ever collateral damage that comes with. I guess it lets the hospital know how much they need to apologize afterwords. Maybe my sunflower seed consumption will end up being curtailed due to sodium content. Who knows.
The test was pretty interesting. I was invited back into the exam/test side of the hospital and handed some scrubs to change into. Being an experienced hospital regular, (chemo baller?) I came prepared with my jump bag and my own lounge type pants to change into. I declined the scrubs and told the nurse I will just use my own. I believe the quote was something along the lines of "You may want to rethink your decision. Many patients have a tendency to urinate on themselves during this test. Your urine will be radioactive and it is probably safer to allow us to launder scrubs".
------Awkward Silence-----------
"Uh Great, so I think I will go with the scrubs."
At this point, it was hard for me to concentrate as I started having some flashbacks of my mom zipping up my jammies and asking if I had gone potty.
After I finished changing into scrubs, the nurse started an IV line, showed me to the rest room for a pit stop and walked me to the Kidney Nuc Med scanner. I was told that I would be injected with a radio-isotope and that the test would last 22 minutes. At exactly 11 minutes, they would be injecting a lasix diuretic into the IV to watch how well the kidneys process. The scan machine was pretty cool. I was able to lay there and watch a real time image of my kidneys collecting fluid and passing it down my ureters and to my bladder. The screen also displayed test time which was both a curse and a blessing.
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It was pretty easy going. Angie was allowed to hang out with me and take a few pictures. At the halfway point they injected the lasix and pulled the IV. It only took a few minutes to kick in but I could tell when it did. My kidneys started to ache and I noticed what I thought was my bladder moving a little. I did not know at the time but this sensation was my filtration system providing me with some light foreshadowing. Everything was fine until I hit the 5 minute mark and I noticed that I was beginning to feel like I might need to assauge my bladder. At the 3 minute mark, I noticed that the timer was slowing down. At the 2 minute mark my eyes were starting to water and I was starting to question if I was going to go the distance. (cue Cake, The Distance) At the one minute mark I was pretty sure that my kidneys, and bladder were both going to rupture. I started wondering to myself how much pressure does your body really create? I managed to complete the test sans an isotope spill. I'm pretty sure that the nurse took an additional 15 secondinutes <<<< yes that is seconds that seem like minutes, to come to my side and move the equipment out of the way. I tried to play cool and walk down the hall but was definitely in a hurry. I approached the single turn in the hallway like the final turn at the brickyard 400 trying to cut precious time with perfect entry/exit angles. The scrubs drawstring was undone before I hit the door handle, and much like a NASCAR pit crew, I was taking care of business before the vehicle came to a complete stop. The rest is history. Or was it? Interestingly enough, I was back in that same restroom exactly 4 minutes later doing exactly the same thing. I managed to change my clothes and made a 3rd trip in less than 10 minutes. Angie and I made our way to the parking garage, into the car, and a mile to the east of the hospital before I had to take another pit stop at the corner gas station. At this point, my pit crew and I were trying to determine if we could go the distance without making another pit. We rolled the dice and managed to roll into a sandwich shop just off of 99 and Fry for our last isotope flush of the day.
One more adventureunder my belt, near my belt.
Just say no to Lasix.
The test was pretty interesting. I was invited back into the exam/test side of the hospital and handed some scrubs to change into. Being an experienced hospital regular, (chemo baller?) I came prepared with my jump bag and my own lounge type pants to change into. I declined the scrubs and told the nurse I will just use my own. I believe the quote was something along the lines of "You may want to rethink your decision. Many patients have a tendency to urinate on themselves during this test. Your urine will be radioactive and it is probably safer to allow us to launder scrubs".
------Awkward Silence-----------
"Uh Great, so I think I will go with the scrubs."
At this point, it was hard for me to concentrate as I started having some flashbacks of my mom zipping up my jammies and asking if I had gone potty.
After I finished changing into scrubs, the nurse started an IV line, showed me to the rest room for a pit stop and walked me to the Kidney Nuc Med scanner. I was told that I would be injected with a radio-isotope and that the test would last 22 minutes. At exactly 11 minutes, they would be injecting a lasix diuretic into the IV to watch how well the kidneys process. The scan machine was pretty cool. I was able to lay there and watch a real time image of my kidneys collecting fluid and passing it down my ureters and to my bladder. The screen also displayed test time which was both a curse and a blessing.
.JPG)
One more adventure
Just say no to Lasix.
Monday, March 18, 2013
#21 - New Tats
Angie and I made the trip to the radiation treatment center on Friday morning. As with most everything that we have experienced at MDA the "system" was well thought out and ran like clockwork. We pulled up to the radiation treatment entrance and promptly tossed the keys of the Mazdaratti 3 to the free valet. I made sure that I gave him the look. You know, the look that says, sorry you have to get in this thing. Anyhow, we picked up our valet ticket and slipped in the door. The place was pretty full but after we checked in we only had to wait ~ 5 minutes before we got called back. The visit with the doc was nice. They had a sneak preview to my Thursday PET scan and were the first to tell me that it was clear and that they didn't see any activity above background levels. A follow up CT scan still shows a mass but it is basically a dead lump of tissue (so we think). We want to make sure that we go the extra mile and thus, I will begin a 36 Gray radiation therapy that will be dished out in 22 fractions.
The therapy consists of using a linear particle accelerator to shoot a concentrated beam of radiation right at the mass in question. It is pretty accurate and they can basically control the beam to hit only the mass. Tissue in front of and directly behind may take a little bit of a beating. In order to cut down on the amount of collateral damage they want to make sure that they can hit the same area every time. Unfortunately it is a bit more difficult when you are targeting something in your abdomen. My abdomen is as hard as a rock. It is right up there on the hardness scale hovering between carbide and diamond. I guess most other people have "a bowl full of jelly" and things move around from day to day. I decided to show some humility and opted not to make a big deal about them wanting to take some extra steps to make sure they hit the same spot.
I was taken into a CT scanner and laid on a table. After they got me into the position that wanted me at, they made a custom mold of my legs. I asked if there was something else they could do to increase my street cred and we decided on some custom ink work. I ended up with three new tatoos. One on each hip and one several inches south of my belly button. They may only be the size of freckles but they have already given me an ego boost. I have also started to talk a little bit like Rocky Balboa. After getting my new "work" done and my mold made up I was ready to go.
I made a follow up trip to MDA today. They officially informed me that I was in Remission. I still think it is a little early to celebrate but it is good news.
Tomorrow - Kidney Function Test (another radio-isotope test)
Thursday - Radiation Round 1 ,
yo Adrian
The therapy consists of using a linear particle accelerator to shoot a concentrated beam of radiation right at the mass in question. It is pretty accurate and they can basically control the beam to hit only the mass. Tissue in front of and directly behind may take a little bit of a beating. In order to cut down on the amount of collateral damage they want to make sure that they can hit the same area every time. Unfortunately it is a bit more difficult when you are targeting something in your abdomen. My abdomen is as hard as a rock. It is right up there on the hardness scale hovering between carbide and diamond. I guess most other people have "a bowl full of jelly" and things move around from day to day. I decided to show some humility and opted not to make a big deal about them wanting to take some extra steps to make sure they hit the same spot.
I was taken into a CT scanner and laid on a table. After they got me into the position that wanted me at, they made a custom mold of my legs. I asked if there was something else they could do to increase my street cred and we decided on some custom ink work. I ended up with three new tatoos. One on each hip and one several inches south of my belly button. They may only be the size of freckles but they have already given me an ego boost. I have also started to talk a little bit like Rocky Balboa. After getting my new "work" done and my mold made up I was ready to go.
I made a follow up trip to MDA today. They officially informed me that I was in Remission. I still think it is a little early to celebrate but it is good news.
Tomorrow - Kidney Function Test (another radio-isotope test)
Thursday - Radiation Round 1 ,
yo Adrian
Thursday, March 14, 2013
#20 - Warning, Tomographic Post
One more day of my life was spent cruising the MDA. It is a different experience every time, but there is one constant. I leave the building knowing that I am much better off than most of the people there. I feel guilty that things seem to have been so smooth for us.
The hospital itself is a large facility with a number of hallways and several different commons areas where you can hang out. Most of the "hang outs" are filled with bald heads, masks, and any number of I.V poles, pumps, and various other feeding tubes etc. It is quite a gathering of pain. They are people who come from all over the world to get help. For many, this is their last stop, and their last shot at trying to stop the thing that is creeping up on them. It is basically a gathering of some of the worst of the worst. It is a heart-breaker to be there. I have to hand it to the staff, they have truly been awesome. It is neat to see the patience and the great respect they show for everyone.
The side effects seem to be worse now than they were during chemo. Maybe it just takes a while for all the cells to die, and for it to start showing up but they have been a bit rough and I have had to learn to be careful. My mouth is ultra sensitive to spicy food. I had a little A-1 sauce on Monday night and my mouth was on fire like I had just chewed up a jalapeno. Forget salsa. My head is sweating just thinking about it. My index finger on my left hand has gone numb and it looks like I am going to possibly loose my nail. My toes have gone a little numb as well. My toes were itching the other night in bed so I started rubbing my feet together a little bit. I didn't pay much attention to what I was doing and I ended up giving myself what looks like road rash on the tops of my toes. I'm scabbed up now but if that's the worst of it, I will take it.
Today was hopefully my last PET (Positron Emission Tomography) scan. I am beginning to feel like a lymph veteran. This is only my 3rd but the procedure feels pretty routine.
I have been paying very close attention to see if the tracer has some kind of body changing affect. I have learned that when exposed to such radioactive substances, you begin to shoot webs, grow muscles, run fast etc. I am pretty sure that I have the looks to be Captain America but I just need to be patient for the body changes. It is a tough call because I would like Angie to get started on sewing a up a super suit, but I'm not sure what measurements we should shoot for. I suppose that is why most super suits are made out of spandex. We have all seen people that defy physics and somehow manage to get into "stretchy pants". Who can blame them? "When you are a man, sometimes you wear stretchy pants in your room. It's for fun" - Nacho
I haven't noticed any real changes to my biceps or pecs but I was encouraged today when I noticed how fast I could throw down a Whataburger. Seriously, I doubt it took me 2 minutes. I was a bit hungry after the 20 hour fast but still, the speed of consumption indicates some super human changes. It wasn't quite blurrrry fast, but it was close. I think I will take to the streets tomorrow to put my foot speed to the test. If I can manage a jog, it will be proof that the transformation has started. Another test might be to see if I can finish more than half of one of Landon's cross fit work outs.
Big Day Tomorrow
The hospital itself is a large facility with a number of hallways and several different commons areas where you can hang out. Most of the "hang outs" are filled with bald heads, masks, and any number of I.V poles, pumps, and various other feeding tubes etc. It is quite a gathering of pain. They are people who come from all over the world to get help. For many, this is their last stop, and their last shot at trying to stop the thing that is creeping up on them. It is basically a gathering of some of the worst of the worst. It is a heart-breaker to be there. I have to hand it to the staff, they have truly been awesome. It is neat to see the patience and the great respect they show for everyone.
The side effects seem to be worse now than they were during chemo. Maybe it just takes a while for all the cells to die, and for it to start showing up but they have been a bit rough and I have had to learn to be careful. My mouth is ultra sensitive to spicy food. I had a little A-1 sauce on Monday night and my mouth was on fire like I had just chewed up a jalapeno. Forget salsa. My head is sweating just thinking about it. My index finger on my left hand has gone numb and it looks like I am going to possibly loose my nail. My toes have gone a little numb as well. My toes were itching the other night in bed so I started rubbing my feet together a little bit. I didn't pay much attention to what I was doing and I ended up giving myself what looks like road rash on the tops of my toes. I'm scabbed up now but if that's the worst of it, I will take it.
Today was hopefully my last PET (Positron Emission Tomography) scan. I am beginning to feel like a lymph veteran. This is only my 3rd but the procedure feels pretty routine.
- Check in ,
- Snag a medical bracelet
- Get called back to the diagnostics area
- Tell 4 different people what my name and birth date is.
- Weigh in,
- Change into hospital scrubs,
- Get a warm blanket (booyeah)
- Walk down the hall to a very small (Just big enough to get a recliner in) exam room.
- Sit down, kick back.
- Tech starts an IV
- Tech snags a lead encased vial of the radio-isotope and starts pushing the tracer.
- Snag a 50 minute nap
- empty bladder of whatever tracer you can
- lay down on the cat scan table/sled/bed/ whatever it is (this trip seemed to be more comfortable than before. The techs were awesome and super personable)
- Put your arms up over the pillow above your head and hold still,
- Scan for 20 minutes and thats all she wrote
I have been paying very close attention to see if the tracer has some kind of body changing affect. I have learned that when exposed to such radioactive substances, you begin to shoot webs, grow muscles, run fast etc. I am pretty sure that I have the looks to be Captain America but I just need to be patient for the body changes. It is a tough call because I would like Angie to get started on sewing a up a super suit, but I'm not sure what measurements we should shoot for. I suppose that is why most super suits are made out of spandex. We have all seen people that defy physics and somehow manage to get into "stretchy pants". Who can blame them? "When you are a man, sometimes you wear stretchy pants in your room. It's for fun" - Nacho
I haven't noticed any real changes to my biceps or pecs but I was encouraged today when I noticed how fast I could throw down a Whataburger. Seriously, I doubt it took me 2 minutes. I was a bit hungry after the 20 hour fast but still, the speed of consumption indicates some super human changes. It wasn't quite blurrrry fast, but it was close. I think I will take to the streets tomorrow to put my foot speed to the test. If I can manage a jog, it will be proof that the transformation has started. Another test might be to see if I can finish more than half of one of Landon's cross fit work outs.
Big Day Tomorrow
- Radiation Consult
- Radiation Trial Run
- Camping / Fishing with Hudson @ Matagorda Beach Fri/Sat
Wednesday, March 6, 2013
#19 - The Big Dud
I wish that I could say that I was super duper stoked, after I finished the last round of chemo but I never did get that moment. I can think of a few occasions where on great days (school finals, etc) I would get back to my car, let out a shout, crank the tunes and drive away. On February 21st, I headed back to my car after having spent 15 hours in and around the hospital. I can't recall exactly what I was feeling, but just trying to recall any thoughts or emotions stirs up the smell of chemicals that I probably had in my nose at the time. MMMMMMMM chemo drugs,,,smell very similar to rubbing alcohol. The actual treatment is contained to the IV, the tubing and the port, but as it hits the circulatory system and your lungs, you quickly begin to exhale / taste / smell some of Johnson & Johnson's finest home cooking. Anyhow, I hit the car and headed home in fairly anti-climatic fashion.
Maybe I should do a quick rewind and recap the day. I left early to make a 7:30 blood draw. Having become a somewhat seasoned daily commuter, I realized that in order to make MDA I was going to need to hit the road by about 6:00ish. Barring an accident on the concrete luge run that is commonly referred to as the West Park tollway, I was good to go. Angie stayed behind to see the kids off to school and joined me as I was finishing up vitals and the blood draw. We hung around and waited for the visit with the doctor and everything was great with the exception that my next scheduled chemo treatment wasn't on the calendar until July. A typo had me bumped from the schedule but they were able to find a place for me in the afternoon. With a few hours to knock out, Angie and I made our way over to D'Amicos for lunch. It was pretty awesome and reminded us of being in some of the small restaurants in Italy. The food was the real deal and it was a great diversion. We made our way back to the hospital and waited, and waited, and waited. Finally! our pager went off and we reported to the main desk. It was then that we were told that they were so far behind, that we were being moved to another floor and was given another pager to wait. We finally made it in, got hooked up, and it was on! (time stamp 4 PM) In a matter of minutes, I was groggy and was on my way out of consciousness. I remember being a little frustrated and having a hard time getting comfortable. I was tossing all over the place so I thought. What hadn't really registered is that every time I tossed, 30 minutes had rolled off and pretty soon, it was 7:00. It was great to have Angie there, and she was determined to stay with me for the last one, but it didn't make much sense for her to watch me sleep. I was going to run late, and the kids needed a mom so she left for home. As the nurse was pulling the needle from my port, and as she was cleaning up, she made the comment "See you next time". I suppose this was the moment when I should have jumped, kick my heels together and have shouted something witty, but I didn't even bother sharing that this was my last one. I was afraid I would end up engaged in a conversation I didn't have the energy for.
In the days since the last round, many people have asked a number of variants to the question "Aren't you soooo excited it's over???". I still don't know how to properly answer the question. I have sat here for the last 20 minutes trying to put into words how I feel. Well, make that 30 now. I am sure that the following won't make sense to anyone but if I put it down now, I don't know that I will ever come back to it.
I am happy that chemo is over, but happy isn't the right word. Happy seems too strong of a word and shows emotion. It makes no sense at all but I feel very dead / neutral to being done. I know that chemo is horrible(will not attempt to explain). Logically I want very much to never have to do it again. I am terrified of the thought of possibly having to do it again, but for whatever reason, I can't get excited about being done. Maybe relief is a better word but I don't really feel relieved. My mind keeps swirling around these points:
- I'm not really done - I still have radiation
- I don't think anyone will ever tell me "You are cured"
- Without a "cured" title, chemo will always feel suspended rather than finished.
Well that was a rabbit hole I didn't intend to go down. What shows up as a paragraph here, was about an hour of some pretty deep thought. I guess it was good to process. I haven't really given much thought to my last treatment. I certainly haven't attempted to wrap my head around how I feel about it. I didn't think I would blow my own mind on it,,,,, lol It is late,
Next Up - Radiation Therapy Consult and Simulation Run 3/15
Some cool things have happened since my last post.
- Camping with Hudson on the "Be a pig/man" camp out where we hung out with the older boys and cooked a whole pig.
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| Hudson - Slack Line Beast |
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| A knife and a stick. What more could you ask for? |
- Watched Hudson and Gracie grip the wool and bust some mutton at the Katy rodeo. Gracie's ride was posted on youtube. Although I am proud of Hudson, his split second ride on "Tornado" and the tears that followed didn't warrant being posted on the internet.
- Made a trip to SA to stop by the Alamo and SeaWorld.
Tuesday, February 12, 2013
#18 - Years!
Another big week in the books for us. Angie's mom, Kathy offered to spend a treatment week at the house and help keep the kids on track with school, and to help Angie around the house while we were trying to knock down a fifth round. She was a big help, and the kids loved it. We made the trip to MDA on Thursday for the typical blood draw, biggest gainer weigh in, and pre-treatment check up with the doctor. As usual, everything went like clockwork and we were in the exam room in no time. It was very nice to hear my regular PA and doc confirm what I had been told two weeks prior. They were both impressed with the response and also confirmed that I was working on treatment number 5 of 6. After some additional small talk about a nice family style Italian restaurant in town, I was sent on my way with orders for Chemo # 5 and a little Angie in my life. (Cue Lou Bega)
Chemo wasn't scheduled to start until 4:30, so I sent Angie and her mom for home to meet the kids coming home from school. I ended up waiting quite a while to get things started. I have noticed that the biggest difference between treatment #2 and #5 is that I started getting sick long before I ever started receiving drugs. As a matter of fact, the mental association of the word chemo provides me with some nasty, albeit brief, flashes of sick. I can't describe it as nausea, but it is terrible none the less. Making the decision to post an update here actually gave me a quick flash. It seems to pop up quite often. I hope it goes away but something tells me that the association might stick with me for some time.
The actual treatment went well, I don't remember much. I typically pack my ipad, my phone and prepare to keep myself entertained for the 6+ hours but I never seem up to actually using any of it after I tap into that first bag hanging from the IV pole. I am usually pretty groggy from that point on. The nurses were great, the port access was spot on, and I was done around 11 (I think). A good friend of mine working late downtown swung by and drove me home (Thanks Scott) I am pretty sure that I spent most of the night in my bed, and most of Friday on my living room floor. I started coming out of it Saturday morning but didn't seem to come around as fast as the last few. I didn't feel 100% until late Monday.
Sunday marked 18 years to the day that Angie and I were married and my new authoritarianism dictatorship began. By my account it has been a wildly successful reign. I have been successful in squashing most of the revolts such as the "Puppy Revolt" of 2013 and the "Try On These Skinny Jeans" revolt of 2011. Unfortunately others such as the "Broadway Les Misrables", and "Birthday Pedicure" revolts, both of 2012, were utter failures. All kidding aside life is good.
As any dictator would do on an anniversary, I organized a child watch campaign, and a two-person parade to dinner/ night on the town Kim Jong Un style. It was great to get away for a night. We have typically spent previous anniversary's talking about the years that have gone by. This year, I think we spent more time thinking and talking about the future. It was great. Alright, this is mushy enough, I will end there before I pull some facebookish like declaration that would gag a maggot. (Angie, we can discuss offline)
Thanks for watching the kids Kathy.
Before I sign off,
After a long debate at bedtime this evening. Hudson has proven the following facts about giraffes.
Corinne Mattinson, thanks for the beanie, I tried to be as "bad piggy" as possible to do it justice.
Chemo wasn't scheduled to start until 4:30, so I sent Angie and her mom for home to meet the kids coming home from school. I ended up waiting quite a while to get things started. I have noticed that the biggest difference between treatment #2 and #5 is that I started getting sick long before I ever started receiving drugs. As a matter of fact, the mental association of the word chemo provides me with some nasty, albeit brief, flashes of sick. I can't describe it as nausea, but it is terrible none the less. Making the decision to post an update here actually gave me a quick flash. It seems to pop up quite often. I hope it goes away but something tells me that the association might stick with me for some time.
The actual treatment went well, I don't remember much. I typically pack my ipad, my phone and prepare to keep myself entertained for the 6+ hours but I never seem up to actually using any of it after I tap into that first bag hanging from the IV pole. I am usually pretty groggy from that point on. The nurses were great, the port access was spot on, and I was done around 11 (I think). A good friend of mine working late downtown swung by and drove me home (Thanks Scott) I am pretty sure that I spent most of the night in my bed, and most of Friday on my living room floor. I started coming out of it Saturday morning but didn't seem to come around as fast as the last few. I didn't feel 100% until late Monday.
Sunday marked 18 years to the day that Angie and I were married and my new authoritarianism dictatorship began. By my account it has been a wildly successful reign. I have been successful in squashing most of the revolts such as the "Puppy Revolt" of 2013 and the "Try On These Skinny Jeans" revolt of 2011. Unfortunately others such as the "Broadway Les Misrables", and "Birthday Pedicure" revolts, both of 2012, were utter failures. All kidding aside life is good.
As any dictator would do on an anniversary, I organized a child watch campaign, and a two-person parade to dinner/ night on the town Kim Jong Un style. It was great to get away for a night. We have typically spent previous anniversary's talking about the years that have gone by. This year, I think we spent more time thinking and talking about the future. It was great. Alright, this is mushy enough, I will end there before I pull some facebookish like declaration that would gag a maggot. (Angie, we can discuss offline)
Thanks for watching the kids Kathy.
Before I sign off,
After a long debate at bedtime this evening. Hudson has proven the following facts about giraffes.
- Giraffes don't lay eggs or sit on nests.
- Giraffes have furry horns, but they don't use them to poke dogs
- Giraffes don't eat dogs
- Giraffes don't chew on wood to sharpen their dog eating teeth.
- Giraffes don't use their long necks to keep their bodies away from dogs while they are trying to eat dogs.
- Giraffes don't have lips, they just have skin that looks like the shape of lips (still debating)
- Giraffes do Spar but it looks more like really bad dancing.
Sunday, January 27, 2013
#17 - Positrons are a +
I had an extremely hot date on Wednesday afternoon with a radioactive tracer. Having been through a PET scan once before, I decided to go it alone. The process was similar to the first time with some subtle differences. Scrubs rather than gowns = Plus (+), hospital rather than Bookmobile style bus = Plus (+), 13 year old Pet scan technician rather than Dude #1 who exuded medical know how = Negative (-). Seriously, it appeared that the Boy Scouts of America may have added the PET Scan merit badge to their list of awards. Apparently I was helping a local 2nd Class scout get his service hours.
I got over it pretty quickly, after all, what could go wrong? I had just been injected with a radioisotope which was currently undergoing beta decay, kicking off positrons and in turn, emitting gamma rays to be collected by a machine that by some accounts, turned Han Solo into a brick. Rumor has it, that it was also operated by a 2nd Class Scout.
The scan went well. It is amazing how hard it is to try to hold still for 20 minutes. Some people freak a little bit over the confined quarters of the PET Scan machine but for me it was keeping my arms above my head for 20 minutes. I could barely get them back around after it was over. After the scan, I was turned loose to expose the general public to gamma rays. A walking dirty bomb on the streets of Houston.
Angie and I went back to the Hospital early Thursday morning for the results of the scan and for a blood check prior to treatment that same afternoon. The blood results came back normal, probably better than they have been in a year. The written interpretation of the PET scan is as follows:
Diagnostic Imaging reviewed personally with attending, agree with radiology impression as follows:
PET/CT 1/23/13: Excellent therapeutic response when compared to the outside PET/CT scan which is suboptimal because there are no fusion images. There is some residual basically eumetabolic abnormality in the territory of the left iliac nodal groups in the left pelvis.
Assessment/Plan: 36 yo man with stage IIB bulky DLBCL, weakly CD30+, tolerating R-CHOP well with excellent response on PET/CT after 3 cycles.
1. Lymphoma: proceed with cycle 4 of R-CHOP14
2. Neulasta to be administered 24 hours after completion of chemotherapy
3. Follow-up: the patient will return weekly for fast track labs. He will follow-up with Dr. Fowler in 2 weeks for consideration prior to cycle 5.
A couple of notes here:
I was expecting good results based a few anecdotal things I had noticed but it felt great to see the weight lifted off of Angie's shoulders in those few seconds. I knew this was a big checkpoint for us both, but didn't realize what it meant to her. Watching her face as we were given the results was a great moment & a great blessing. The good news was also some much needed re-assurance for our older kids.
Non Lymph Related (kinda)
I have spent a good portion of the recovery weekend watching the Winter X Games and some college hoops. The X-Games made me a little home sick for the snowboard and friends, but it has also left me a bit inspired. They have been advertising the "Go Pro" camera quite a bit. They are pretty amazing devices which can capture some amazing pictures at altitude and are super durable. You can mount them anywhere, and can take video of just about whatever you get into. I am pretty good at justyfying purchases, and decided I should probably purchase one. I don't think anyone can argue the following points.
I got over it pretty quickly, after all, what could go wrong? I had just been injected with a radioisotope which was currently undergoing beta decay, kicking off positrons and in turn, emitting gamma rays to be collected by a machine that by some accounts, turned Han Solo into a brick. Rumor has it, that it was also operated by a 2nd Class Scout.
The scan went well. It is amazing how hard it is to try to hold still for 20 minutes. Some people freak a little bit over the confined quarters of the PET Scan machine but for me it was keeping my arms above my head for 20 minutes. I could barely get them back around after it was over. After the scan, I was turned loose to expose the general public to gamma rays. A walking dirty bomb on the streets of Houston.
Angie and I went back to the Hospital early Thursday morning for the results of the scan and for a blood check prior to treatment that same afternoon. The blood results came back normal, probably better than they have been in a year. The written interpretation of the PET scan is as follows:
Diagnostic Imaging reviewed personally with attending, agree with radiology impression as follows:
PET/CT 1/23/13: Excellent therapeutic response when compared to the outside PET/CT scan which is suboptimal because there are no fusion images. There is some residual basically eumetabolic abnormality in the territory of the left iliac nodal groups in the left pelvis.
Assessment/Plan: 36 yo man with stage IIB bulky DLBCL, weakly CD30+, tolerating R-CHOP well with excellent response on PET/CT after 3 cycles.
1. Lymphoma: proceed with cycle 4 of R-CHOP14
2. Neulasta to be administered 24 hours after completion of chemotherapy
3. Follow-up: the patient will return weekly for fast track labs. He will follow-up with Dr. Fowler in 2 weeks for consideration prior to cycle 5.
A couple of notes here:
- BSA 2nd Class scouts are awesome!
- C'mon All Knowing PET Scan Dude #1, No fusion images?
- I thought I was originally told that each cycle for R-CHOP consists of 2 treatments per cycle = 12 treatments. Apparently I may have been mistaken. It was explained to me that I may only have 2 more treatments followed by Radiation. (keeping excitement in check as this was not my normal Doc)
I was expecting good results based a few anecdotal things I had noticed but it felt great to see the weight lifted off of Angie's shoulders in those few seconds. I knew this was a big checkpoint for us both, but didn't realize what it meant to her. Watching her face as we were given the results was a great moment & a great blessing. The good news was also some much needed re-assurance for our older kids.
Non Lymph Related (kinda)
I have spent a good portion of the recovery weekend watching the Winter X Games and some college hoops. The X-Games made me a little home sick for the snowboard and friends, but it has also left me a bit inspired. They have been advertising the "Go Pro" camera quite a bit. They are pretty amazing devices which can capture some amazing pictures at altitude and are super durable. You can mount them anywhere, and can take video of just about whatever you get into. I am pretty good at justyfying purchases, and decided I should probably purchase one. I don't think anyone can argue the following points.
- No better way to induce motion sickness with your family and friends than video playback of extreme sports.
- I can capture all the extreme sports that we (my family) participate in while living in the Houston suburbs of Katy Texas.
Tuesday, January 15, 2013
# 16. Hypothesis Confirmed
Statements about backsides and not having danced the song were made prior to her reading the experiment.
booooooooooooyeahhh Woooooot! Lol
booooooooooooyeahhh Woooooot! Lol
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