One of my best friends in this world is my old college roommate TJ (aka: Teej, ET, Tim, Timmy, and many other non-G rated names we won’t go into). He and I have been in each other's weddings, we've raised a bunch of "trouble" together, we've shared many laughs, shared a few tears, killed many flies together (inside joke!), have many inside jokes, and so many other things over the years that I should end this list with an etc. now. TJ & I can go for long periods of time without talking, and then when we finally get together things pick up where they left off when last we saw each other. He's that kind of friend...rarely found, always cherished. TJ has also been "follicly challenged" (balding or bald) since the first I met him. Since there is a strong prediction that I will go bald (which as of this morning seems to be coming true), I e-mailed TJ for some possible fashion tips. I was expecting the answer "need more leather" (another inside joke about a visit to Poseurs Club in Georgetown sometime back in the mid 1980's). However, TJ came back with a one word answer..."hats." So, TJ has taken it upon himself to send me hats to help with my likely new hair style (or non-hair style as the case may be).
As most of you may know by now given my last blog entry, my week last week was less than perfect! When I finally got home from the hospital there was a package waiting at the door. The return address was TJ's. So after the Saving Crew left me on Friday, I opened the package and found inside it one of the most ... um ... well, one of the most ridiculous looking hats you could imagine. (Time to be ready for a couple of really obscure references!) The hat looks like a combination of the hats worn by Gene Hackman as Popeye Doyle in the "French Connection" and the the title character's from the old TV show "Kolchak, The Night Stalker." To add to the ridiculousness of it, TJ had attached a number of pins to it. Not just any pins, but some pins that we had collected with our other roommate (and another of my best friends in the world), Dave. These pins used to hang on a bunting that we hung off the home-made bar that resided in the living room of our off-campus house (classic and cliche for the times!). Well TJ chose these pins quite carefully from the numerous ones that still reside on the bunting, and each has meaning in the form of even more inside jokes or incredible events during those years. Basically, the pins make the hat! At least for me.
So, after opening the box, all I could do was laugh ... then laugh some more ... then laugh even more. It was a perfect ending to the Kaka week that I had just been through. After getting my wits about me, I called TJ immediately, which started the laughter all over again. We laughed for about an hour on the phone, reliving the meaning of each pin. The laughter really was just great!
After a little more discussion, we finally got around to agreeing that this will be my Blog Hat and I would wear it while blogging here (which I'm doing right now).
Teej (and thus tacitly his wife Joan ) has promised that more thematic hats will be forthcoming along the way. I don't know if the laughter this one induced can be topped, but it will be fun to see what TJ (& Joan) come up with next!
Life is good!
PS: Joan has since e-mailed me. It seems that she & TJ are coming to stay with me the week of Aug 4 to help me through Chemo Week Round 2. I’ll probably feel like Kaka then, but I know I’ll get to smile with them around.
PPS: I’ll post a shot of my new hat as soon as I can find where the digital camera is hidden ... ugh!
Saturday, July 26, 2008
Chemo Recovery Week …
To quote the immortal Jerry Garcia, “…what a loooong strange trip it’s been.” I’m sure his line, like my week, was a bit chemically induced (OK more than a bit for both the line & the week). I’m also sure that Jerry’s "side effects" were more sought after than mine!
This week should probably be named the “I-Feel-Like-Kaka; I-Desire-Food-Like-Kaka; My-Mouth-Hurts-Like Kaka; Water-Tastes-Like-Kaka; Why-Doesn’t-This-Kaka-Just-Go-Away” Week (by the way, “Kaka” is another name for poop for all the non-parents out there). This may all sound like potty humor, but I assure you that there was nothing comical about the potty this week. So, as the formal name for it is long, so was the week, as is this blog entry too. So brace yourselves!
OK here goes:
Part 1. “Mission Accomplished”
OK, bear with me on this analogy if I misstate some of the historical facts. Picture if you will George W. Bush on the USS ENTERPRISE aircraft carrier after Sadam was ousted, looking rather smug with a large sign in the background declaring Mission Accomplished. "W" proclaims that the US force has saved the Iraqis in something less than 100 days, and now all is right with the world. Well I feel that I made the same gaff in my last post by even suggesting that the 1st round of chemo was complete when I thought it was! I deserve a very big "UM...DUH" after that! To all those that have received chemo, my apologies for my arrogance. I now have a new found admiration and respect for those that have done this before me (some I went thru with as a “care giver,” others I know individually, and those that I am not aware of). The 1st round of chemo only proved that the "prizefight" was not anywhere near over when Ethel left me. Ethel proved to be a bit vindictive in her absence, and it has taken until yesterday morning to even want to look at food, get out the fetal position, and feel even semi-human again.
Part 2. "The Recovery Week"
So I had spent the weekend at my sister's house with her, her hubby, her 3 wonderful kids, her huge Rhodesian Ridgeback, and my most benevolent mom (to be known as the Saving Crew). They had babied, nursed, fed, and cared for me all weekend and I thought I had it from there, so home I went. Lori came over Sunday evening and fed me, bought me some supplies and helped me feel even more human. So I was feeling pretty confident that Monday would go relatively well.
Monday arrived and getting out of bed proved to be a bit difficult. I did get up, but a bit late. I went to the kitchen with my Ethel induced hangover and force fed myself some food and water (get the feeling this is like prison at this point?!?). Well, I essentially stayed on the couch the entire day. However there was a high point. Amy brought the kids by for a visit. They stuck with me for a couple of hours and I really enjoyed it. We just plain hung with each other, joking, talking, goofing, and all the almost normal things we do. I was supposed to get my blood work tested on Monday, but after the kids left I was a bit low on energy. So it was to wait until Tuesday morn. To bed I went!
Tuesday I awoke with all sorts of vim and vigor. Feeling as good as "OK" I decided that this was my Carpe Diem day for the week. I rolled (well kind of rolled) down the stairs after one of those great showers that invigorate you (kind like an Irish Spring soap commercial). I ate, drank fluids, packed some food for later and off to "blood work" at Kaiser I went. This is where I met the newest med tech that Kaiser had on staff. We'll name her Lucy (notice a theme), There for only 2 days I believe that I may have been the 2nd or 3rd costumer on her resume. Lucy was being trained, and she wasn't very confident in her protocol: forgot to put on her gloves, provided a loose tourniquet, and fumbled with much of the equipment. I looked at her trainer with my best "are you sure you want to put me through this?" look, but we were all in this together, so I bucked up and decided to help in Lucy's training. As the needle came closer I started to have second thoughts (another "DUH" moment), and looked away awaiting the inevitable failure to find the vein, the eventual working of the needle, the possible re-stick and the inevitable repeat of the process until the trainer would finally take pity after seeing me wince for the 3,457,362-nd time. Well, before I knew it, Lucy had actually done the deed and was drawing blood with nary a wince on my part. Lucy was able to draw blood from me with absolutely no pain felt by yours truly. What luck, life is good! After professing my bravos to Lucy, she looked at me in a shocked manner as if her accomplishment even surprised her, and I was again on my way. Off to the Office I was heading, still feeling full of vim & vigor even after the Lucy-stress had been heaped upon my psyche. However, after the good & painless fortune of the experience I felt nothing could stop me now.
Upstairs from the lab I ran into an old friend Maria and 2 of her 4 step daughters (I mention the numbers because the 2 daughters I saw are part of a set of triplets and were elem school classmates of my son). We caught up for a while and Maria offered herself as a resource in my cancer adventure with the idea of calling her at the drop of a hat at any time if I need help. I'll say it again, I am truly blessed and lucky! After our goodbyes, off to the office I went. I spent a couple of somewhat productive hours there, but I could feel the energy dwindling. Thus, to home I went.
The rest of the afternoon was spent face down over the toilet bowl, cussing, pissed off, and spewing stuff. Then came the call from my saving angel, my sister Christy. After about 2 seconds we agreed that I was to head to her house. Outside in the heat again, I loaded some provisions in the car and drove out there. (A quick acknowledgement to my next door neighbor Reggie who offered to drop everything and drive me. In hindsight it probably would have been smarter to take him up on it. Have I mentioned that I'm stubborn?). I spent the rest of Tuesday in a fetal position on Christy's couch, however happy to have the love of the Saving Crew around me again.
Then came Wednesday... more fetal position, food a necessity but definitely not a desire, water tasting funny, smells killing me, and ... well let's just say Kaka and leave it at that! The Saving Crew kept an eye on me all day, while I was looking vindictively back at the world. Then, Weds evening occurred. As my mom was saying good-bye for the night, she shook my hand and her mother instincts kicked into high gear. She single handedly (literally) determined that I had a fever (another dread for chemo patients in general). It was 102.3 on the thermometer. We verified it with another thermometer just to quell my arguing against the reading. The Saving Crew was very patient with me! They were also determined to make sure that I was taken care of appropriately. After calls to Kaiser, then another round of cussing at the toilet while spewing, Christy and I were off to Kensington Kaiser at 2100 (that's 9:00 PM for you non-military types). My temperature reduced mystically to 100.9 on the drive, but it seems that my white blood cell levels were below the safe threshold. So off to the hospital ER I was sent. Christy & I got there at midnight. For some reason my temperature dropped back to normal between Kaiser and the ER without any assistance from Tylenol or the like. So, more blood drawings, a chest X-ray, and a feeble attempt at a urine sample (TMI?) from a very parched patient. Christy stuck with me until 0300 (3:00 AM for non-militaries), but since it was determined that I was to be admitted for a few days, we agree that she should head home to try to get some sleep (Have I said that Christy is my angel/hero/greatest support?!?). I spent the rest of the night with nurse Bob trying to coerce a urine sample from me. This was fine except that I had not had anything to drink since around dinner time (a small glass of flat Ginger Ale at that), thus none was forthcoming. Not to add any pressure, or to threaten, but Bob's response to my numerous failed attempts was to suggest that he may need to provide a catheter to assist in acquiring his coveted sample. My response was dry, but firmly stated "Uh....no!" I never did satisfy his quest to fill Bob's hallowed cup! Having avoided the catheter, I look back at this as a victory, albeit a small one, on my part. Sometimes a guy has to take what he can get!
Thursday morning at 0600 (6:00 AM!) found me wheeling through the Holy Hilton Halls (actually known as Holy Cross Hospital) at breakneck speeds lying flat on my back on a gurney from the ER to my luxury room in the sky (a single on the 6th floor, the Chemo ward). The skill of my driver was admirable as we moved quickly with nary an accident. I met Edith the nurse, a very nice woman that I got to know for, well an hour and I never saw her again. Then at 0700 (oh enough already if greater than 1200 then subtract 12!) I met my own "Florence Nightingale" Nurse Joan who took care of me during days (she's fantastic at her job and very nice). Basically I spent Thursday lying in bed receiving electrolytes and antibiotics intravenously, having blood drawn, getting my vitals taken, providing a coveted urine sample, swallowing barium for another CT scan, getting the CT scan, ordering and trying to eat food (eating most of it), and getting visitors and talking on the phone. A pretty full day, I slept pretty well that night.
Friday brought more good news (no ... it really was really this time), I was to be released a day earlier than expected. The release time of that evening was caveatted that no infection would show up in my last blood samples and that I had to get a final shot before I go (man I really hate shots) and they could call me back after the release. So while waiting for the warden to throw open the gates, my day was very similar to the day before, but you can substitute the CT stuff with reading and sitting in a chair by the window. What a luxurious life of leisure. I was finally enjoying life with my every need cared for, my appetite returning (well at least food was starting to taste ... OK), and my other ailments seemingly improving, and then they decide to throw me out. I shouldn't write this but I actually would have like another day at the Holy Hilton. Oh well, home and feeling much improved is also a wonderful place to be! Thanks to the Saving Crew for picking me up!
So here I am, at home again, enjoying my time, wearing my new blogging hat (another blog entry-to-be), wearing my Life is Good t-shirt with the soccer player doing a bicycle kick on it, listening to some really good music, writing (!), eating, drinking juice, talking to folks on the phone, receiving the generosity of a neighbor/friend who went to get me some whole milk, and washing my hands a lot. Things are not Kaka....today. Well I'm off to get a couple prescriptions filled.
Thanks to my Holy Hilton visitors for the moral boost (E-man, Terry; Lori; Mom; Christy; Susan, Joe, Hanna (one of my star players on the greatest 3rd & 4th grade soccer team in the world), & Michael). Thanks to Thom & Patty & family for watching my house whilst I was away. Thanks to Julie for the milk run upon my return. And a special thanks to two of the greatest nurses going; Joan & Sylvie who helped me through a transition from Kaka to actually looking forward to a meal and feeling a little better than OK.
This week should probably be named the “I-Feel-Like-Kaka; I-Desire-Food-Like-Kaka; My-Mouth-Hurts-Like Kaka; Water-Tastes-Like-Kaka; Why-Doesn’t-This-Kaka-Just-Go-Away” Week (by the way, “Kaka” is another name for poop for all the non-parents out there). This may all sound like potty humor, but I assure you that there was nothing comical about the potty this week. So, as the formal name for it is long, so was the week, as is this blog entry too. So brace yourselves!
OK here goes:
Part 1. “Mission Accomplished”
OK, bear with me on this analogy if I misstate some of the historical facts. Picture if you will George W. Bush on the USS ENTERPRISE aircraft carrier after Sadam was ousted, looking rather smug with a large sign in the background declaring Mission Accomplished. "W" proclaims that the US force has saved the Iraqis in something less than 100 days, and now all is right with the world. Well I feel that I made the same gaff in my last post by even suggesting that the 1st round of chemo was complete when I thought it was! I deserve a very big "UM...DUH" after that! To all those that have received chemo, my apologies for my arrogance. I now have a new found admiration and respect for those that have done this before me (some I went thru with as a “care giver,” others I know individually, and those that I am not aware of). The 1st round of chemo only proved that the "prizefight" was not anywhere near over when Ethel left me. Ethel proved to be a bit vindictive in her absence, and it has taken until yesterday morning to even want to look at food, get out the fetal position, and feel even semi-human again.
Part 2. "The Recovery Week"
So I had spent the weekend at my sister's house with her, her hubby, her 3 wonderful kids, her huge Rhodesian Ridgeback, and my most benevolent mom (to be known as the Saving Crew). They had babied, nursed, fed, and cared for me all weekend and I thought I had it from there, so home I went. Lori came over Sunday evening and fed me, bought me some supplies and helped me feel even more human. So I was feeling pretty confident that Monday would go relatively well.
Monday arrived and getting out of bed proved to be a bit difficult. I did get up, but a bit late. I went to the kitchen with my Ethel induced hangover and force fed myself some food and water (get the feeling this is like prison at this point?!?). Well, I essentially stayed on the couch the entire day. However there was a high point. Amy brought the kids by for a visit. They stuck with me for a couple of hours and I really enjoyed it. We just plain hung with each other, joking, talking, goofing, and all the almost normal things we do. I was supposed to get my blood work tested on Monday, but after the kids left I was a bit low on energy. So it was to wait until Tuesday morn. To bed I went!
Tuesday I awoke with all sorts of vim and vigor. Feeling as good as "OK" I decided that this was my Carpe Diem day for the week. I rolled (well kind of rolled) down the stairs after one of those great showers that invigorate you (kind like an Irish Spring soap commercial). I ate, drank fluids, packed some food for later and off to "blood work" at Kaiser I went. This is where I met the newest med tech that Kaiser had on staff. We'll name her Lucy (notice a theme), There for only 2 days I believe that I may have been the 2nd or 3rd costumer on her resume. Lucy was being trained, and she wasn't very confident in her protocol: forgot to put on her gloves, provided a loose tourniquet, and fumbled with much of the equipment. I looked at her trainer with my best "are you sure you want to put me through this?" look, but we were all in this together, so I bucked up and decided to help in Lucy's training. As the needle came closer I started to have second thoughts (another "DUH" moment), and looked away awaiting the inevitable failure to find the vein, the eventual working of the needle, the possible re-stick and the inevitable repeat of the process until the trainer would finally take pity after seeing me wince for the 3,457,362-nd time. Well, before I knew it, Lucy had actually done the deed and was drawing blood with nary a wince on my part. Lucy was able to draw blood from me with absolutely no pain felt by yours truly. What luck, life is good! After professing my bravos to Lucy, she looked at me in a shocked manner as if her accomplishment even surprised her, and I was again on my way. Off to the Office I was heading, still feeling full of vim & vigor even after the Lucy-stress had been heaped upon my psyche. However, after the good & painless fortune of the experience I felt nothing could stop me now.
Upstairs from the lab I ran into an old friend Maria and 2 of her 4 step daughters (I mention the numbers because the 2 daughters I saw are part of a set of triplets and were elem school classmates of my son). We caught up for a while and Maria offered herself as a resource in my cancer adventure with the idea of calling her at the drop of a hat at any time if I need help. I'll say it again, I am truly blessed and lucky! After our goodbyes, off to the office I went. I spent a couple of somewhat productive hours there, but I could feel the energy dwindling. Thus, to home I went.
The rest of the afternoon was spent face down over the toilet bowl, cussing, pissed off, and spewing stuff. Then came the call from my saving angel, my sister Christy. After about 2 seconds we agreed that I was to head to her house. Outside in the heat again, I loaded some provisions in the car and drove out there. (A quick acknowledgement to my next door neighbor Reggie who offered to drop everything and drive me. In hindsight it probably would have been smarter to take him up on it. Have I mentioned that I'm stubborn?). I spent the rest of Tuesday in a fetal position on Christy's couch, however happy to have the love of the Saving Crew around me again.
Then came Wednesday... more fetal position, food a necessity but definitely not a desire, water tasting funny, smells killing me, and ... well let's just say Kaka and leave it at that! The Saving Crew kept an eye on me all day, while I was looking vindictively back at the world. Then, Weds evening occurred. As my mom was saying good-bye for the night, she shook my hand and her mother instincts kicked into high gear. She single handedly (literally) determined that I had a fever (another dread for chemo patients in general). It was 102.3 on the thermometer. We verified it with another thermometer just to quell my arguing against the reading. The Saving Crew was very patient with me! They were also determined to make sure that I was taken care of appropriately. After calls to Kaiser, then another round of cussing at the toilet while spewing, Christy and I were off to Kensington Kaiser at 2100 (that's 9:00 PM for you non-military types). My temperature reduced mystically to 100.9 on the drive, but it seems that my white blood cell levels were below the safe threshold. So off to the hospital ER I was sent. Christy & I got there at midnight. For some reason my temperature dropped back to normal between Kaiser and the ER without any assistance from Tylenol or the like. So, more blood drawings, a chest X-ray, and a feeble attempt at a urine sample (TMI?) from a very parched patient. Christy stuck with me until 0300 (3:00 AM for non-militaries), but since it was determined that I was to be admitted for a few days, we agree that she should head home to try to get some sleep (Have I said that Christy is my angel/hero/greatest support?!?). I spent the rest of the night with nurse Bob trying to coerce a urine sample from me. This was fine except that I had not had anything to drink since around dinner time (a small glass of flat Ginger Ale at that), thus none was forthcoming. Not to add any pressure, or to threaten, but Bob's response to my numerous failed attempts was to suggest that he may need to provide a catheter to assist in acquiring his coveted sample. My response was dry, but firmly stated "Uh....no!" I never did satisfy his quest to fill Bob's hallowed cup! Having avoided the catheter, I look back at this as a victory, albeit a small one, on my part. Sometimes a guy has to take what he can get!
Thursday morning at 0600 (6:00 AM!) found me wheeling through the Holy Hilton Halls (actually known as Holy Cross Hospital) at breakneck speeds lying flat on my back on a gurney from the ER to my luxury room in the sky (a single on the 6th floor, the Chemo ward). The skill of my driver was admirable as we moved quickly with nary an accident. I met Edith the nurse, a very nice woman that I got to know for, well an hour and I never saw her again. Then at 0700 (oh enough already if greater than 1200 then subtract 12!) I met my own "Florence Nightingale" Nurse Joan who took care of me during days (she's fantastic at her job and very nice). Basically I spent Thursday lying in bed receiving electrolytes and antibiotics intravenously, having blood drawn, getting my vitals taken, providing a coveted urine sample, swallowing barium for another CT scan, getting the CT scan, ordering and trying to eat food (eating most of it), and getting visitors and talking on the phone. A pretty full day, I slept pretty well that night.
Friday brought more good news (no ... it really was really this time), I was to be released a day earlier than expected. The release time of that evening was caveatted that no infection would show up in my last blood samples and that I had to get a final shot before I go (man I really hate shots) and they could call me back after the release. So while waiting for the warden to throw open the gates, my day was very similar to the day before, but you can substitute the CT stuff with reading and sitting in a chair by the window. What a luxurious life of leisure. I was finally enjoying life with my every need cared for, my appetite returning (well at least food was starting to taste ... OK), and my other ailments seemingly improving, and then they decide to throw me out. I shouldn't write this but I actually would have like another day at the Holy Hilton. Oh well, home and feeling much improved is also a wonderful place to be! Thanks to the Saving Crew for picking me up!
So here I am, at home again, enjoying my time, wearing my new blogging hat (another blog entry-to-be), wearing my Life is Good t-shirt with the soccer player doing a bicycle kick on it, listening to some really good music, writing (!), eating, drinking juice, talking to folks on the phone, receiving the generosity of a neighbor/friend who went to get me some whole milk, and washing my hands a lot. Things are not Kaka....today. Well I'm off to get a couple prescriptions filled.
Thanks to my Holy Hilton visitors for the moral boost (E-man, Terry; Lori; Mom; Christy; Susan, Joe, Hanna (one of my star players on the greatest 3rd & 4th grade soccer team in the world), & Michael). Thanks to Thom & Patty & family for watching my house whilst I was away. Thanks to Julie for the milk run upon my return. And a special thanks to two of the greatest nurses going; Joan & Sylvie who helped me through a transition from Kaka to actually looking forward to a meal and feeling a little better than OK.
Sunday, July 20, 2008
Chemo - Round 1 Done
Thank goodness! I was able to keep it together, but am happy that Ethel is not around anymore. Her incessant talking really began to bug me around Thursday last week. Needless to say that our time apart will be appreciated by me! Having been through this round there there are some lessons that I have learned.
1. I am not superman! My sister took me to her house after Ethel was removed and I stayed there for the weekend recovering. It was necessary, appreciated and a great help!
2. Hydration during chemo is very important!
3. I need to eat more! This has been the mantra for quite a while now, and I just have to get fully committed to it and "just do it."
4. Chemo is hard! Don't let anyone convince you otherwise! However, with willpower, desire, and help you can get through it.
5. Chemo does weird things to you. From what I hear it's different for each person. My senses of smell and taste are very different right now. For a while my teeth felt like they didn't fit in my mouth and my tongue and gums have a very weird sensation to them. This is just to name a few.
So in this prizefight of chemo versus Steve, I think we both were able to land a few blows. I've learned some things for the next round and I think I'll do better then. Although, I'm expecting the toxic build-up might make the next round a bit more tough. However, we'll see! After all, I am a bit of a competitive person and I intend to win this bout.
1. I am not superman! My sister took me to her house after Ethel was removed and I stayed there for the weekend recovering. It was necessary, appreciated and a great help!
2. Hydration during chemo is very important!
3. I need to eat more! This has been the mantra for quite a while now, and I just have to get fully committed to it and "just do it."
4. Chemo is hard! Don't let anyone convince you otherwise! However, with willpower, desire, and help you can get through it.
5. Chemo does weird things to you. From what I hear it's different for each person. My senses of smell and taste are very different right now. For a while my teeth felt like they didn't fit in my mouth and my tongue and gums have a very weird sensation to them. This is just to name a few.
So in this prizefight of chemo versus Steve, I think we both were able to land a few blows. I've learned some things for the next round and I think I'll do better then. Although, I'm expecting the toxic build-up might make the next round a bit more tough. However, we'll see! After all, I am a bit of a competitive person and I intend to win this bout.
Friday, July 18, 2008
Chemo Picture - Day 1
I'm posting this a little after the fact! My chemo nurse Donna is loading me up. The hunky dude in the foreground is, of course, yours truly. I thought it ironic that the chemo nurses wear hazard clothing when they hook you up to something that they're injecting into your body! Seems kind of wacky that the medicine that cures you is also dangerous to the healthy! Where's the logic in that?
Wednesday, July 16, 2008
The Nice Surprises
I am a lucky man in many ways. I have the love and support of family, friends, and seemingly many others given the responses to this blog. People show this in the darnedest ways. Here's a couple of pretty cool examples.
My neighbors have been asking if I need anything, any help. They've been offering to help me with my shopping, stopping by to check on me, calling from the store to see if I need something picked up. I even had one neighbor offer to help with my laundry (she must know that I hate doing laundry more than any other chore!). I haven't taken advantage of these offers yet, but I'll bet that day is coming!
Well the neatest surprise was last night. I got back from hanging with my daughters after work at around 2000 (8:00 PM for you non-military types!). I looked past my front door and found a ladder leaning against my house. As I looked at the site a bit quizzically, I noticed my neighbor Cary at the bottom of the ladder. Then I notice my neighbor Reg at the top. After coming to my wits, I had to ask what they were up to. Well these two "angels" were cleaning my rain gutters. Wow, talk about a nice surprise! I gave them each a beer in return. It seems like a minor offer after they took it upon themselves to help me out in such a nice way. Thanks guys!
Life is good in many ways, and I'm truly blessed!
My neighbors have been asking if I need anything, any help. They've been offering to help me with my shopping, stopping by to check on me, calling from the store to see if I need something picked up. I even had one neighbor offer to help with my laundry (she must know that I hate doing laundry more than any other chore!). I haven't taken advantage of these offers yet, but I'll bet that day is coming!
Well the neatest surprise was last night. I got back from hanging with my daughters after work at around 2000 (8:00 PM for you non-military types!). I looked past my front door and found a ladder leaning against my house. As I looked at the site a bit quizzically, I noticed my neighbor Cary at the bottom of the ladder. Then I notice my neighbor Reg at the top. After coming to my wits, I had to ask what they were up to. Well these two "angels" were cleaning my rain gutters. Wow, talk about a nice surprise! I gave them each a beer in return. It seems like a minor offer after they took it upon themselves to help me out in such a nice way. Thanks guys!
Life is good in many ways, and I'm truly blessed!
Tuesday, July 15, 2008
Ethel the Wonder Pump
So it was decided today that I should call my "man-purse" (pump & 5FU) companion "Ethel." So Ethel it is. Stephen has given her some personality with a loving face looking up at me. I feel so loved!!!
I went to work today for a few hours. It was good to keep some normalcy and see everyone. After work I hung out with my girls, introduced them to Ethel, and played a couple of board games. It was great to see them.
I was able to muffle Ethel enough last night that her pumping noise (her way of talking to me!) didn't keep me awake. She consistently speaks to me around every 3 minutes. She makes a sound like a small receipt or label maker printer. So muffled she was!
Anyway, the 5FU continues its way into me to work its "magic" and forge to the cure. I am feeling pretty good so far.
I went to work today for a few hours. It was good to keep some normalcy and see everyone. After work I hung out with my girls, introduced them to Ethel, and played a couple of board games. It was great to see them.
I was able to muffle Ethel enough last night that her pumping noise (her way of talking to me!) didn't keep me awake. She consistently speaks to me around every 3 minutes. She makes a sound like a small receipt or label maker printer. So muffled she was!
Anyway, the 5FU continues its way into me to work its "magic" and forge to the cure. I am feeling pretty good so far.
Monday, July 14, 2008
Chemo - Day One
The road to the cure started today.
I had to do a little prep work yesterday and this morning first. First up, believe it or not I am now a steroid user, dexamethasone twice yesterday, today and twice tomorrow. I can feel my muscles expanding as I write! Actually it is used to enhance the anti nausea meds and to help fight fluid retention. Then numerous anti nausea meds prior to chemo this morning, and numerous more for tonight, tomorrow and into the near future.
OK on to the chemo experience! Start time 0800 (that's 8:00 AM for the non-military types!). I get to meet a number of chemo nurses (Donna, Delaney, and Tiffany). Donna was my main care giver and she was very nice and all business. Delaney relieved her at lunch time. Then, it turns out that I had an acquaintance from St Catherine's, Tiffany Sowa. She checked on me a bunch of times to. Nice to have a familiar face around on staff! Donna & I went through a bunch of stuff together, information on side effects, what to expect, what I expected, nutrition, hair loss possibility, etc. Trying to aborb everything is like drinking through a fire hose! It's a bit much. Then started the actual chemotherapy.
First up, 1000 ml of saline to hydrate me, followed by Cisplatin, followed by 1000 ml of saline, followed by, um, er, um, a bathroom break! OK back in the chemo chair, and on to Taxotere, followed by a 30 ml line flush to make sure all the chemo is fully in my system and not left in the tubing. This took about 6 hrs.
Now comes the fun part! The last drug to be injected is Flourouracil, otherwise commonly referred to as 5FU. I'm not sure I want anything injected in me that's known as "FU" but there you have it. Not much choice in the matter! So the method of injection with this is a little different than the other 2 parts of the cocktail. Where the 1st two were injected in me completely today, this stuff will be injected very slowly over the next 4 days. Let me explain!
5FU will be inject via a portable pump that I will carry with me 24 hrs a day for the next 4 days (to be returned on Friday afternoon). The pump is programmed to inject the stuff at 2.5 ml per hour, all day every day whether eating, sleeping, or showering. I have a constant electric companion complete with its own chemo reservoir. I won't be lonely this week!
So we finally left the chemo portal at 1530 (that's 3:30 for the non-military types!), and now I'm home. Getting 5FU still, and about to embark on a bunch more pills to help keep the nausea from happening. So far so good. Hope they continue to work!!!
Most of round 1 is done, more to come.
Thank-you's to Lori for taking me there, bringing me lunch, hanging with me, and getting me home; Emiliano for the phone conversation and your special brand of humor; Dave-o for calling to check on me; and many others for your support. The love continues and it's great!
I had to do a little prep work yesterday and this morning first. First up, believe it or not I am now a steroid user, dexamethasone twice yesterday, today and twice tomorrow. I can feel my muscles expanding as I write! Actually it is used to enhance the anti nausea meds and to help fight fluid retention. Then numerous anti nausea meds prior to chemo this morning, and numerous more for tonight, tomorrow and into the near future.
OK on to the chemo experience! Start time 0800 (that's 8:00 AM for the non-military types!). I get to meet a number of chemo nurses (Donna, Delaney, and Tiffany). Donna was my main care giver and she was very nice and all business. Delaney relieved her at lunch time. Then, it turns out that I had an acquaintance from St Catherine's, Tiffany Sowa. She checked on me a bunch of times to. Nice to have a familiar face around on staff! Donna & I went through a bunch of stuff together, information on side effects, what to expect, what I expected, nutrition, hair loss possibility, etc. Trying to aborb everything is like drinking through a fire hose! It's a bit much. Then started the actual chemotherapy.
First up, 1000 ml of saline to hydrate me, followed by Cisplatin, followed by 1000 ml of saline, followed by, um, er, um, a bathroom break! OK back in the chemo chair, and on to Taxotere, followed by a 30 ml line flush to make sure all the chemo is fully in my system and not left in the tubing. This took about 6 hrs.
Now comes the fun part! The last drug to be injected is Flourouracil, otherwise commonly referred to as 5FU. I'm not sure I want anything injected in me that's known as "FU" but there you have it. Not much choice in the matter! So the method of injection with this is a little different than the other 2 parts of the cocktail. Where the 1st two were injected in me completely today, this stuff will be injected very slowly over the next 4 days. Let me explain!
5FU will be inject via a portable pump that I will carry with me 24 hrs a day for the next 4 days (to be returned on Friday afternoon). The pump is programmed to inject the stuff at 2.5 ml per hour, all day every day whether eating, sleeping, or showering. I have a constant electric companion complete with its own chemo reservoir. I won't be lonely this week!
So we finally left the chemo portal at 1530 (that's 3:30 for the non-military types!), and now I'm home. Getting 5FU still, and about to embark on a bunch more pills to help keep the nausea from happening. So far so good. Hope they continue to work!!!
Most of round 1 is done, more to come.
Thank-you's to Lori for taking me there, bringing me lunch, hanging with me, and getting me home; Emiliano for the phone conversation and your special brand of humor; Dave-o for calling to check on me; and many others for your support. The love continues and it's great!
Sunday, July 13, 2008
Extra Parts - The Power Port
Last week I had a "Power Port" put into my chest just below the skin. Here's what it's supposed to do. It provides a convenient location for injections. In my case, it allows my chemo crowd to inject me through my skin without having to go directly to my arm veins with the needle (save the arm veins!).
Here's what it looks like. Picture a triangle the size of a quarter or so on its face. It's about a 1/2 inch thick and its purple. In the middle of the triangle is a circle which is the pad where the needle goes in to. Coming out of the triangle is a tube the size of a spaghetti noodle. If you should be able to see my chest on the upper right hand side, you may notice a bump on my skin. That's where it is!
So the tube that comes out of the triangle is the "pipe" that takes the injection from the "PP" to one of the main veins to the heart. Then the injected stuff makes its way through the entire body.
How cool is that!?!?!
Anyway, this is supposed to make chemo easier. I figure I'm that much closer to being a bionic man!! We'll see how it works tomorrow.
Here's what it looks like. Picture a triangle the size of a quarter or so on its face. It's about a 1/2 inch thick and its purple. In the middle of the triangle is a circle which is the pad where the needle goes in to. Coming out of the triangle is a tube the size of a spaghetti noodle. If you should be able to see my chest on the upper right hand side, you may notice a bump on my skin. That's where it is!
So the tube that comes out of the triangle is the "pipe" that takes the injection from the "PP" to one of the main veins to the heart. Then the injected stuff makes its way through the entire body.
How cool is that!?!?!
Anyway, this is supposed to make chemo easier. I figure I'm that much closer to being a bionic man!! We'll see how it works tomorrow.
Saturday, July 12, 2008
How Did I Get Here?
The question has been asked by many (me included), "How did I get this cazy thing?" The answer is - we may never know!
There are some basic facts regarding this type of cancer. So here's what I can tell you:
1. In 2007 there were aproximately 15,500 cases of adenocarcenoma in the esophagus across the US. Of those cases, about 12,000 were white males.
2. Most folks that get this have had acid reflux desease (GERD) for much of their life.
3. The typical age group that get this are in their 60's or older.
4. Other contributors are obesity, smoking, and heavy drinking.
5. There is a bacteria type that can be in the stomach (I think it's called H Pylory Bacteria) that can cause GERD. This bacteria can be a contributor for this cancer.
So, given these basics, the only real contributing factor that I have for this type of cancer is....I am a white male.
My surgical oncologist basically said that we may never know why. My answer to that is fine, let's just get rid of it!!!
There are some basic facts regarding this type of cancer. So here's what I can tell you:
1. In 2007 there were aproximately 15,500 cases of adenocarcenoma in the esophagus across the US. Of those cases, about 12,000 were white males.
2. Most folks that get this have had acid reflux desease (GERD) for much of their life.
3. The typical age group that get this are in their 60's or older.
4. Other contributors are obesity, smoking, and heavy drinking.
5. There is a bacteria type that can be in the stomach (I think it's called H Pylory Bacteria) that can cause GERD. This bacteria can be a contributor for this cancer.
So, given these basics, the only real contributing factor that I have for this type of cancer is....I am a white male.
My surgical oncologist basically said that we may never know why. My answer to that is fine, let's just get rid of it!!!
The Way Forward
OK, test are done. Cancer is staged. I am a Phase 2, T3, N1 adenocarcenoma of the esophagus cancer patient. A new title to add to my resume!
During the diagnosis phase of this adventure, there were many gyrations as to how to proceed with the cure. The first course discussed was surgery then chemo/radiation. The notion was that the cancer had not progressed past the esophagus & stomach so removal of the infected area was a good way to start. Then get rid of any nasty's roaming around my body with the chemo and bombard the area where it formally resided to get rid of any cancer cells that may have been left behind from the surgery. This went by the wayside as all the results came in and recently published studies were looked at.
Now the way forward is to start with chemo for a couple of cycles (each cycle is about a month long). This will be followed by a couple more chemo cycles and 25 rounds of radiation. Radiation will be given daily, 5 days a week (weekends off) for 5 weeks. Then surgery when all this is done. I'm not sure what the follow-on to surgery will be yet. I guess we'll find out!
During the diagnosis phase of this adventure, there were many gyrations as to how to proceed with the cure. The first course discussed was surgery then chemo/radiation. The notion was that the cancer had not progressed past the esophagus & stomach so removal of the infected area was a good way to start. Then get rid of any nasty's roaming around my body with the chemo and bombard the area where it formally resided to get rid of any cancer cells that may have been left behind from the surgery. This went by the wayside as all the results came in and recently published studies were looked at.
Now the way forward is to start with chemo for a couple of cycles (each cycle is about a month long). This will be followed by a couple more chemo cycles and 25 rounds of radiation. Radiation will be given daily, 5 days a week (weekends off) for 5 weeks. Then surgery when all this is done. I'm not sure what the follow-on to surgery will be yet. I guess we'll find out!
How the Adventure Started - basic facts to date
So I thought I'd bring everyone up to speed as to how this started. It seems pretty sudden when I look back at it.
A few months ago I found that I had trouble swallowing red meats. It hurt on the way down, kind of like when you swallow water with a bubble of air at the same time. The pain in your chest can be very nasty! Well this happened only occasionally, and so I thought that it was something that would go away. Little did I know!! After a while, it became more consistent until I finally decided to go to the doctor. (Many that know me well know that that was a major decision on my part as I really hate to go to doctors!). The initial diagnosis was Steakhouse Syndrome (or Shatzke's Ring) which really is a pretty benign thing, so there was no real cause for concern. It would be verified by an Upper GI Barium Swallow tests and then on to the cure. Yippee! Well, so much for the easy way out!
The adventure now started its real beginning. First up, an endoscopy. A tube going down my throat with camera & tool to get biopsies. I was knocked out for the procedure, and when I woke up, I was told that I have a tumor in my esophagus and upper part of my stomach. Diagnosed as cancer on June 9 by the pathology report! Poorly diferentiated Adenocarcinoma with ringlet cell features to be exact.
Next up, a CT scan of my abdomen with more barium to swallow and an iodine like substance injected into me to give contrast for the photos (no need to smile, they can see right through that). The tumor was verified but with a bit of good news. It had not gone to anything near by based on what they could see.
Next up, another CT scan of my upper chest. This time there was no need for the barium (yeah!), but another contrast injection was needed. (I'm beginning to feel like a pin cushion!
Next up, meetings with an Oncology surgeon (Dr. Pelton), Medical Oncologist (Dr. So), and Radiation Oncologist (Dr. Parrazzo). All these were consultations to discuss the way forward each having their own opinion as to the best way to proceed. Surgery first then chemo & radiation, or chemo/radiation first then surgery. Bottom line, I need more tests to get this thing fully diagnosed!
Next up, an Endoscopic Ultra Sound (EUS). The EUS is very similar to an Endoscopy except that they go down your throat with 2 instruments. The first is the regular camera, which has a smaller diameter tube. The second is the Ultra Sound tube which is a bit larger in size. I was knocked out again for this and when I woke up, the preliminary report indicated that the tumor had gone most of the way through my organ walls and that there was one local lymph node infected and another that looked suspicious.
Next up, a PET scan. Here they inject you with radioactive glucose and then wait for an hour. Then your put into a tube similar to the CT scan machine. The bottom line is that the glucose will be attracted to cancer deposits in your body, "attach" to it, and the radioactive stuff will light it up. It will show any cancer activity that is greater than around a 1/2 cm. in size. Good news from this, nothing showed up!
Finally, the way forward is decided.
A few months ago I found that I had trouble swallowing red meats. It hurt on the way down, kind of like when you swallow water with a bubble of air at the same time. The pain in your chest can be very nasty! Well this happened only occasionally, and so I thought that it was something that would go away. Little did I know!! After a while, it became more consistent until I finally decided to go to the doctor. (Many that know me well know that that was a major decision on my part as I really hate to go to doctors!). The initial diagnosis was Steakhouse Syndrome (or Shatzke's Ring) which really is a pretty benign thing, so there was no real cause for concern. It would be verified by an Upper GI Barium Swallow tests and then on to the cure. Yippee! Well, so much for the easy way out!
The adventure now started its real beginning. First up, an endoscopy. A tube going down my throat with camera & tool to get biopsies. I was knocked out for the procedure, and when I woke up, I was told that I have a tumor in my esophagus and upper part of my stomach. Diagnosed as cancer on June 9 by the pathology report! Poorly diferentiated Adenocarcinoma with ringlet cell features to be exact.
Next up, a CT scan of my abdomen with more barium to swallow and an iodine like substance injected into me to give contrast for the photos (no need to smile, they can see right through that). The tumor was verified but with a bit of good news. It had not gone to anything near by based on what they could see.
Next up, another CT scan of my upper chest. This time there was no need for the barium (yeah!), but another contrast injection was needed. (I'm beginning to feel like a pin cushion!
Next up, meetings with an Oncology surgeon (Dr. Pelton), Medical Oncologist (Dr. So), and Radiation Oncologist (Dr. Parrazzo). All these were consultations to discuss the way forward each having their own opinion as to the best way to proceed. Surgery first then chemo & radiation, or chemo/radiation first then surgery. Bottom line, I need more tests to get this thing fully diagnosed!
Next up, an Endoscopic Ultra Sound (EUS). The EUS is very similar to an Endoscopy except that they go down your throat with 2 instruments. The first is the regular camera, which has a smaller diameter tube. The second is the Ultra Sound tube which is a bit larger in size. I was knocked out again for this and when I woke up, the preliminary report indicated that the tumor had gone most of the way through my organ walls and that there was one local lymph node infected and another that looked suspicious.
Next up, a PET scan. Here they inject you with radioactive glucose and then wait for an hour. Then your put into a tube similar to the CT scan machine. The bottom line is that the glucose will be attracted to cancer deposits in your body, "attach" to it, and the radioactive stuff will light it up. It will show any cancer activity that is greater than around a 1/2 cm. in size. Good news from this, nothing showed up!
Finally, the way forward is decided.
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