I had my pump removed this morning. I am very thankful for that! I had posted on Facebook that the side effects are not too bad, that was mostly true up to that point. However, I woke up at about 0300 in a lot of discomfort. Now sure what the deal was, but it was more or less a stomach ache... I ate some crackers and drank a bunch of water, and was able to get back to sleep around 0400. I felt pretty lousy all the way up to Grand Rapids and back. In fact I didn't feel better until a nice long nap this mid-morning/afternoon. Now I'm fine!
So overall the side effects that I have felt so far are the following:
- sensitive to cold. Hurts to touch cold things. Can't drink cold things. Even breathing cold air is uncomfortable (hurry up, spring!)
- the first bite of food hurt my molars all the way to my jawbone. It reminded me if having a new filling and touching a metal fork to it. The nurse said they hadn't heard that one before.
- I had a general feeling if light-headedness that I originally attributed to the chemo, I have since discovered that I took Tylenol PM instead of regular Tylenol! Oops... That might make a bit of difference...
Anyway, I still maintain that this isn't too bad as long as this the way it will be. I have found some other people with blogs similar to mine (not near as entertaining, though) as far as discovering their cancer at a later stage, and still conquering it. It helps to see that others have been down the same road, and knowing you are not blazing a completely new trail.
Saturday, February 22, 2014
Thursday, February 20, 2014
First Chemo Treatment/Capt. Chemo
As I put as my Facebook status this afternoon. "Call me... Captain Chemo; cancer killer."
My first treatment is ok so far. It was very short notice getting in here today. Things moved along a little slowly because they kind of shoe-horned me into the schedule today. (My nurse today will not be my nurse for the rest of my treatments.) My biggest adverse reaction so far has been the Benadryl that they gave me as a precaution. Sometimes people have reaction to the first medicine they gave me (I can't remember the name.)
I hate Benadryl. It makes me very tired and light headed. Which is why people give it to their kids on long trips. We tried that once, but it had the opposite effect of what we wanted! They stayed awake all night in the car crying! Never gain...
Everyone has been very nice, and supportive. I even got to watch the last two periods of the USA/Canada gold medal women's hockey game. Too bad Canada won... This is one sport where the women's game is just as good as the men's (I know that sounds chauvinistic, but have you ever watched the WNBA? It's nothing like the mens game) The women play just as hard and fast as the men, just without the body checking. That being said, the refs didn't do the Americans any favors at the end of the game... The nurses kept coming by my station to ask how the game was going, and for details. I thought that was pretty cool, because no one even knew the game was on before I got here. I guess my enthusiasm was contagious.
This is the first session of 12. That takes me to the middle of July before it's over. I'm not exactly sure what comes after that. I'm sure there will be tests, and whatever to determine the next steps... I'm just happy to get going...
Captain Chemo signing off....
My first treatment is ok so far. It was very short notice getting in here today. Things moved along a little slowly because they kind of shoe-horned me into the schedule today. (My nurse today will not be my nurse for the rest of my treatments.) My biggest adverse reaction so far has been the Benadryl that they gave me as a precaution. Sometimes people have reaction to the first medicine they gave me (I can't remember the name.)
I hate Benadryl. It makes me very tired and light headed. Which is why people give it to their kids on long trips. We tried that once, but it had the opposite effect of what we wanted! They stayed awake all night in the car crying! Never gain...
Everyone has been very nice, and supportive. I even got to watch the last two periods of the USA/Canada gold medal women's hockey game. Too bad Canada won... This is one sport where the women's game is just as good as the men's (I know that sounds chauvinistic, but have you ever watched the WNBA? It's nothing like the mens game) The women play just as hard and fast as the men, just without the body checking. That being said, the refs didn't do the Americans any favors at the end of the game... The nurses kept coming by my station to ask how the game was going, and for details. I thought that was pretty cool, because no one even knew the game was on before I got here. I guess my enthusiasm was contagious.
This is the first session of 12. That takes me to the middle of July before it's over. I'm not exactly sure what comes after that. I'm sure there will be tests, and whatever to determine the next steps... I'm just happy to get going...
Captain Chemo signing off....
Tuesday, February 18, 2014
What a day may hold...
You never know where your day may take you. I had spent the previous three workdays (Thursday, Friday, and Monday) calling the Cancer Center asking for results or this particular test they were running because o my elevated CA19-9 level. Today, I just wanted to go to work
I was sick of asking, so I didn't make my traditional 9am call. I didn't make my 11:30am call (gotta catch 'em before lunch), I just went about my business doing service calls in Grand Rapids, and then Lansing. It wasn't until I finished my call in Lansing that I figured enough already, and called in. I called the main line, and was told a nurse would call me back. I called the number for the financial assistant that was assigned to me, but she didn't answer. I called several times within an hour. I got no where.
I finally got the call just before 5pm that is was colon cancer and NOT pancreatic cancer. I know I've said it before, but i feels weird to be thankful for colon cancer, but compared to the alternative, this is the best I could hope for!
I've remained pretty calm though out this whole affair. I've only lost sleep one night in the past month (that's how long I've known about this). I've said it before; I'm not afraid to die, but I fear for my family. I do not want my children to resent God because I "abandoned" them. So i have a lot to live for, and will continue to fight
tooth and nail as long as I can. For whatever reason I feel pretty confident that this is going to work out. I wish everyone else felt the same way.
Angela took Calvin to the doctor with an earache this morning, it's the same office that my primary doc resides in. Angela mentioned what was going on with me to her, so she looked up my charts (Spectrum is huge, ain't it?) I wish she would have had something encouraging to say. Instead she was asking Angela if my will was in order! Thank you so much! I choose to believe the oncologist, you know the guy who does this for a living, when he says I have a decent chance of beating this. Not the family physician who was just absorbing this for the first time, I'm not so naive to think that stage IV cancer is not a monumental obstacle to overcome, but I'm not accustomed to losing... I do not plan on losing here either!
I was sick of asking, so I didn't make my traditional 9am call. I didn't make my 11:30am call (gotta catch 'em before lunch), I just went about my business doing service calls in Grand Rapids, and then Lansing. It wasn't until I finished my call in Lansing that I figured enough already, and called in. I called the main line, and was told a nurse would call me back. I called the number for the financial assistant that was assigned to me, but she didn't answer. I called several times within an hour. I got no where.
I finally got the call just before 5pm that is was colon cancer and NOT pancreatic cancer. I know I've said it before, but i feels weird to be thankful for colon cancer, but compared to the alternative, this is the best I could hope for!
I've remained pretty calm though out this whole affair. I've only lost sleep one night in the past month (that's how long I've known about this). I've said it before; I'm not afraid to die, but I fear for my family. I do not want my children to resent God because I "abandoned" them. So i have a lot to live for, and will continue to fight
 | |
| This is what I fight for. Not the puppies... the people, don't be ridiculous | ! |
Angela took Calvin to the doctor with an earache this morning, it's the same office that my primary doc resides in. Angela mentioned what was going on with me to her, so she looked up my charts (Spectrum is huge, ain't it?) I wish she would have had something encouraging to say. Instead she was asking Angela if my will was in order! Thank you so much! I choose to believe the oncologist, you know the guy who does this for a living, when he says I have a decent chance of beating this. Not the family physician who was just absorbing this for the first time, I'm not so naive to think that stage IV cancer is not a monumental obstacle to overcome, but I'm not accustomed to losing... I do not plan on losing here either!
Monday, February 17, 2014
The reason for my long delay in posts (other than being lazy)
I was suppose to start chemo on last Thursday... That didn't happen. When I didn't get a call for a time, I started calling to see what was going on. I was told that the doc was still concerned about my CA19-9 level. This is carbohydrate antigen 19-9 according to wikipedia. It is elevated in people with pancreatic cancer. The doc says he couldn't ignore this even though the other tests were going my way. They are running some more tests on the biopsy material already collected... Oh snap! Guess what! Pancreatic cancer is back on the table... The good news is that there a several reasons for a false positive on the particular antigen. Such as:
"CA19-9 can be elevated in many types of gastrointestinal cancer, such as colorectal cancer, esophageal cancer and hepatocellular carcinoma.[1] Apart from cancer, elevated levels may also occur in pancreatitis, cirrhosis,[1] and diseases of the bile ducts.[1][5] It can be elevated in people with obstruction of the bile ducts.[5]"
So, I still l have no idea what is going on.. I didn't start chemo, I still (as of 1/17) have no idea what the results of the further tests are. What I do know is that you have to have the proper chemo for the type of cancer you have, So I need to be patient...
But that sucks...
"CA19-9 can be elevated in many types of gastrointestinal cancer, such as colorectal cancer, esophageal cancer and hepatocellular carcinoma.[1] Apart from cancer, elevated levels may also occur in pancreatitis, cirrhosis,[1] and diseases of the bile ducts.[1][5] It can be elevated in people with obstruction of the bile ducts.[5]"
So, I still l have no idea what is going on.. I didn't start chemo, I still (as of 1/17) have no idea what the results of the further tests are. What I do know is that you have to have the proper chemo for the type of cancer you have, So I need to be patient...
But that sucks...
The yo-yo continues to do it's thing...
Sorry for the delay. I'm almost caught up to the present... IF you know anyone who might want to know what's going on with my predicament, feel free to send them towards this blog. it is public, after all!
After the colonoscopy, we waited to meet with the nurses for consultation. This was the time to find out all the ins and outs of chemotherapy, and find out how to deal with them as best as possible. When we got there, the nurse was very pleasant, but the first thing she said was "Seeing that we have not determined to the origin of the cancer, we will need to discuss two possible solutions." I've always been a quick study so I didn't even need to asked to see that she meant they still thought pancreatic cancer was still on the table. I started to turn into a puddle at the bottom of my shoes right about then.
My wife Angela is much smarter that she, or anyone else, gives her credit. She could see across the table that to the date on the report that the nurse was reading from was three day prior to the colonoscopy results. She pointed it our before I could say anything. The nurse immediately stopped, and asked us to hold on for a moment while she left the room. he was gone for a while. When she came back, she oppoligzed for scaring us, and that "yes, the biopsy results were colon cancer."
I won't bore you with the details, but the short version is that I will probably be tired, I may get a little sick to my stomach, but no throwing up is allowed, I will be very sensitive to cold, and I cant go in the sun without SPF30... I didn't think that sounded too bad, really. I had to decide whether I wanted chemo on Wednesdays or Thursdays. I picked Thursday, and ws told I would start the following week. Once again, we left feeling pretty good!
After the colonoscopy, we waited to meet with the nurses for consultation. This was the time to find out all the ins and outs of chemotherapy, and find out how to deal with them as best as possible. When we got there, the nurse was very pleasant, but the first thing she said was "Seeing that we have not determined to the origin of the cancer, we will need to discuss two possible solutions." I've always been a quick study so I didn't even need to asked to see that she meant they still thought pancreatic cancer was still on the table. I started to turn into a puddle at the bottom of my shoes right about then.
My wife Angela is much smarter that she, or anyone else, gives her credit. She could see across the table that to the date on the report that the nurse was reading from was three day prior to the colonoscopy results. She pointed it our before I could say anything. The nurse immediately stopped, and asked us to hold on for a moment while she left the room. he was gone for a while. When she came back, she oppoligzed for scaring us, and that "yes, the biopsy results were colon cancer."
I won't bore you with the details, but the short version is that I will probably be tired, I may get a little sick to my stomach, but no throwing up is allowed, I will be very sensitive to cold, and I cant go in the sun without SPF30... I didn't think that sounded too bad, really. I had to decide whether I wanted chemo on Wednesdays or Thursdays. I picked Thursday, and ws told I would start the following week. Once again, we left feeling pretty good!
Tuesday, February 11, 2014
Darth Vader or Locutus of Borg
I'm a sci-fi nut. I love Star Trek, Star Wars (ep. IV, V & VI, of course), Firefly, and pretty much any other well written (see why I hate ep. I, II, & III?) science fiction.. So when I had the procedure to have a port installed in my chest, the first thing I thought was "cool; cyborg!" This actually helped with the kids....
I had the procedure to have a port installed on Monday the 3rd. Pretty simple operation, really. It's a little metal and plastic disc that is just under the skin on the right side of my chest just below the collar bone. They use it to inject me with IV chemotherapy without putting a fresh needle in my elbow every time. The main reason they went this route, is so I can have a 46 hour chemo delivery and still be ambulatory. (This means I can still do stuff!) I'll have a little fanny pack, kinda like an insulin pump that I wear around for a couple of days every other week.
If you know me, you know I like to crack jokes, make odd observations, and just make people laugh as much as possible. According to Angela, I did my job well during the port installation. I really do not remember much from it, other than one time a nurse telling me to wake up because I was slipping a little too deep into sleep. But Angela says she could hear laughing often coming from the room! Mission accomplished!
Of course, when I came out of the meds, I was still a bit loopy. Angela drove home (It was another fine West Michigan winter day) I made her stop at one point so I could get her to take my picture on the snow bank...
The kids were a little freaked out when they saw the bandages. I can't really blame them, it looked pretty bad, there was a lot of bruising around the area, as you might expect... The thing that finally setteled the, down was pointing out that I was more like Darth Vader now. I made them fell the bump, and the little tube that actually is inserted into my jugular. Now it was cool!
I still reach up and touch it all the time. It's so strange to have something like that attached to your body... Resistance is futile.
I had the procedure to have a port installed on Monday the 3rd. Pretty simple operation, really. It's a little metal and plastic disc that is just under the skin on the right side of my chest just below the collar bone. They use it to inject me with IV chemotherapy without putting a fresh needle in my elbow every time. The main reason they went this route, is so I can have a 46 hour chemo delivery and still be ambulatory. (This means I can still do stuff!) I'll have a little fanny pack, kinda like an insulin pump that I wear around for a couple of days every other week.
If you know me, you know I like to crack jokes, make odd observations, and just make people laugh as much as possible. According to Angela, I did my job well during the port installation. I really do not remember much from it, other than one time a nurse telling me to wake up because I was slipping a little too deep into sleep. But Angela says she could hear laughing often coming from the room! Mission accomplished!
Of course, when I came out of the meds, I was still a bit loopy. Angela drove home (It was another fine West Michigan winter day) I made her stop at one point so I could get her to take my picture on the snow bank...
 | |
| Don't ask me, I'm wasted! |
The kids were a little freaked out when they saw the bandages. I can't really blame them, it looked pretty bad, there was a lot of bruising around the area, as you might expect... The thing that finally setteled the, down was pointing out that I was more like Darth Vader now. I made them fell the bump, and the little tube that actually is inserted into my jugular. Now it was cool!
I still reach up and touch it all the time. It's so strange to have something like that attached to your body... Resistance is futile.
OK.... Now what?
You may find this amazing or crazy, but there has only been one night, just one, that I had a hard time sleeping because of all this... Parts of me wonder of that means I'm somehow psychotic... Oh wait, I think its called peace.
I'm almost caught up to the present at this point. pretty soon my updates are going to be new to everybody (including me). Some you you may have already heard all this directly from me... So it won't be long before there's something for everyone, as they say...
This missing piece to the puzzle is the colonoscopy. If you've never had one, count your blessings! It's not a good time. Actually, the colonoscopy itself is a breeze; it's the preparation that stinks! You have to drink a gallon of what is basically antifreeze... 8 ounces at a time every fifteen minuets until it's gone. Oh, and you have to fast for several hours before and, and several hours after. (I've lost over 15 pounds since all this started just from all the starvation diets I've been on!) The "cleansing" is terrible.. Sounds like fun, eh?
That being said, anybody over 50 should get checked out! Any family member of mine on either side should get checked out too. I'm 39, and that's a long way from the normal scheduled check. Research says it normally takes between 10 and 15 years for a polyp to develop into cancer. If that's the case, and this was the delivery method of my cancer, this started before I was 30! My oldest child is 10. (Do the math...)
What if I caught this somehow right at the beginning? If I found out I had cancer at 29, would we have pursued children? Would I have these 3 amazing, wonderful kids? If I had it to do over, I would choose finding out now, and having my kids every time. I pray that I'm not going to leave them early... I have two daughters that need to be walked down the aisle someday, and a son that wants to be a professional hockey player more than almost anything. (Even his "girlfriend" is a hockey player... she's a keeper!) I would very much like things to get back to normal, but I have no idea what normal is right now...
Anyway, I had my procedure, and it was OK. I went to sleep, and woke to a doctor explaining that it went really well. I got the results in less than 24 hours (I didn't think that was possible!), and the results said colon, and NOT pancreatic cancer! Praise God!!!
Next step; the port.
dun dun DUN!
I'm almost caught up to the present at this point. pretty soon my updates are going to be new to everybody (including me). Some you you may have already heard all this directly from me... So it won't be long before there's something for everyone, as they say...
This missing piece to the puzzle is the colonoscopy. If you've never had one, count your blessings! It's not a good time. Actually, the colonoscopy itself is a breeze; it's the preparation that stinks! You have to drink a gallon of what is basically antifreeze... 8 ounces at a time every fifteen minuets until it's gone. Oh, and you have to fast for several hours before and, and several hours after. (I've lost over 15 pounds since all this started just from all the starvation diets I've been on!) The "cleansing" is terrible.. Sounds like fun, eh?
That being said, anybody over 50 should get checked out! Any family member of mine on either side should get checked out too. I'm 39, and that's a long way from the normal scheduled check. Research says it normally takes between 10 and 15 years for a polyp to develop into cancer. If that's the case, and this was the delivery method of my cancer, this started before I was 30! My oldest child is 10. (Do the math...)
What if I caught this somehow right at the beginning? If I found out I had cancer at 29, would we have pursued children? Would I have these 3 amazing, wonderful kids? If I had it to do over, I would choose finding out now, and having my kids every time. I pray that I'm not going to leave them early... I have two daughters that need to be walked down the aisle someday, and a son that wants to be a professional hockey player more than almost anything. (Even his "girlfriend" is a hockey player... she's a keeper!) I would very much like things to get back to normal, but I have no idea what normal is right now...
Anyway, I had my procedure, and it was OK. I went to sleep, and woke to a doctor explaining that it went really well. I got the results in less than 24 hours (I didn't think that was possible!), and the results said colon, and NOT pancreatic cancer! Praise God!!!
Next step; the port.
dun dun DUN!
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