Actually, I'd prefer to have my breath given back. So tomorrow, I'm having a catheter implanted in my lung cavity. In the past two weeks, I had my lung drained twice (once for 1/2 a liter and again for over a full liter). I could continue going to the hospital for this, but for a couple of reasons it is better to get my on drain hooked up and do it myself.
One of the reasons is that I can do it often and be able to control my breathing better. The other reason is because when I go for a drain here and there, the doc is guessing at the route that the needle has to take from my skin, through my back, past my ribs and into the cavity. The last time when I had a liter drained, 1.5 liters remained because he hit the cavity too high to drain it completely.
This procedure will get the tube right at the bottom of my lung. They say in 60-70% of the patients, the catheter actually helps dry up the fluid and it can be removed in a few months.
It's an out-patient procedure, so I'll be home tomorrow night (and also awake for the tube being inserted in my chest. As the Beach Boys sing, "and we'll have fun, fun, fun 'til the doctor takes the catheter away." (Okay, it wasn't exactly those lyrics!)
Sunday, November 29, 2009
Wednesday, November 25, 2009
Ice, Ice, Baby...
"Oh, we need a little xmas...right this very minute..."
I meant to post this before now, but the last week has been a mess for me. Anyhoo...Last Monday, the 16th, I attended an event in DC for cancer. It was at the Verizon Center and featured ice-skating stars and recording artists. Included were: Dorothy Hamill, Scott Hamilton, and Olivia Newton John (All three are cancer survivors.) Also there were Kristi Yamaguchi, Nancy Kerrigan, Viktor Petrenko, a few 2010 Olympic hopefuls and a couple of American Idols.
The show will be airing Thanksgiving (short notice) on Fox at 4pm or 5pm (after the football game).
Because I'm part of a colon cancer group, we got discounted seats. Instead of the normal $40-$100, I paid $2 each! Yep, $2. And...I was four rows from the ice. I guess cancer has it's perks. (Keep the discount...take the cancer from me.)
The show was SO good. At age 51, Scott Hamilton was still doing back flips. Olivia Newton John sounds exactly the same. If you get a chance, check it out tomorrow.
I meant to post this before now, but the last week has been a mess for me. Anyhoo...Last Monday, the 16th, I attended an event in DC for cancer. It was at the Verizon Center and featured ice-skating stars and recording artists. Included were: Dorothy Hamill, Scott Hamilton, and Olivia Newton John (All three are cancer survivors.) Also there were Kristi Yamaguchi, Nancy Kerrigan, Viktor Petrenko, a few 2010 Olympic hopefuls and a couple of American Idols.
The show will be airing Thanksgiving (short notice) on Fox at 4pm or 5pm (after the football game).
Because I'm part of a colon cancer group, we got discounted seats. Instead of the normal $40-$100, I paid $2 each! Yep, $2. And...I was four rows from the ice. I guess cancer has it's perks. (Keep the discount...take the cancer from me.)
The show was SO good. At age 51, Scott Hamilton was still doing back flips. Olivia Newton John sounds exactly the same. If you get a chance, check it out tomorrow.
Sunday, November 22, 2009
Hospital trip...
He had half his liver removed. Now he's had a tube inserted into his lung cavity (while awake) to drain the fluid. He lives vicariously through himself. He is the most interesting man in the world. I never drink alcohol, but when I do, I prefer Dos Equis.
Well, last weekend I was feeling a little rundown, not much of an appetite, and a headache. I made the trip to Pittsburgh to see the Panthers beat Notre Dame, but I couldn't finish my Primanti Brothers' sandwich, so the victory was missing something! I had to take a narcotic for my head after the game. The next day, I figured out that the headache was due to dehydration. I drank a few bottles of water and was okay.
Monday came and I had a fever, so I stayed home from work. It broke later in the day and I went to a cancer event that night involving skating (stay tuned for post about that night). The event was great, but on my way home, I started feeling beyond sick. I felt awful in so many ways I didn't know what was ailing. I took some narcs and went to sleep. Tuesday was more of the fever, but not as bad as Monday night, so I thought I might be recovering. Tuesday night, it started to hurt with each breath. Not good. If I wasn't better on Wednesday, I was going to the ER.
ER Time... In the ER, there weren't many people in the waiting room, but the back rooms were full. I waited 3.5 hours in the waiting room. I entered at 100.2 degrees and 3 hours later was 101.8. They got me back to a bed fairly quick after that.
Saline was pumped into me to get me hydrated and they took a chest x-ray. It showed I could have pneumonia. There was fluid in my lungs, but people with cancer in their lungs can get fluid there, too. I did a CT scan to see if I had a blood clot, too. Here is the best news of the week...no blood clot! Okay, now back to crap...
I was admitted to the hospital and pumped with saline and antibiotics (even though we didn't know if I had pneumonia). Thursday night, doctors decided to take the fluid from my lung and then test the fluid to see what it was. I asked if my visitor could stay. No, they needed it sterile. So, we began... I sat on the side of the bed and leaned over a pillow on a table in front of me. My arm was stretched over my head. At this point, the tech enters my room to get my vital signs. "Can't you do this later?" "No, I have to do it now." (What? Was she an ant? If she leaves her line, can she not find her way back? I'm having a needle jammed into my upper back. Do you think you're going to get an accurate pulse reading with a sharp instrument in me?)
She eventually left and after using ultrasound, the lung docs found a path through my body to insert the tube. They began. It started off like they were trying to pop the most painful pimple ever on my back and they kept going...until they hit rib. I guess the ultrasound lied because they had to start over. This time worked and they sucked the liquid out. 600 ML of if. It was so gross. They said "we are going to get the most out that we can. we we get near the end, the lung will start to expand/contract and you are going to cough. I went from "fine" to coughing in no time. And I couldn't stop. I thought I might cough up that lung.
The results came back from the testing of the gross stuff. It was not from pneumonia. It didn't mean it was from the cancer, but since I have cancer there, it's likely. In fact, I still don't know what it's from because nobody can tell me a definite answer. That is why I left the hospital. I layed there for a day and a half more will no one was doing anything bug giving me an oral antibiotic. I can that at home and not have people waking me ever hour to borrow blood, take my temp, listen to my heart, or reach in and rip out my stomach.
Do I feel I should have left the hospital? No. But I also knew that no one there was going to do anything for me there. There were no tests lined up. I will monitor myself at home and if I need to return to the ER, I will (but at a different hospital.) 90% of what I have seen at Georgetown is a joke. I like my oncologist and my infusion nurses, but the rest of the staffs seem not to care at all. If you have something else on top of cancer, you might as well go to the local theater and see if there is a doctor in the house.
So, my pain was cleared up via the drainage, but that was the only thing the hospital trip did for me. I know have that lovely water-retention again. My body thinks it is dehydrated and is storing water for the winter like a squirrel with nuts. My legs and abs are huge, pudgy and blobby. And maybe because of this inflated torso, I also have shortness of breath. I get winded walking stairs or anything. Then again, the shortness might be from something else, but none of the docs cared to find out.
I'm banking that when the weight drains, I'll be able to breathe. I have to drink plenty for that to happen.
Stay thirsty, my friends.
Friday, November 6, 2009
Chemo decision...
Sorry to keep you waiting on my choice of chemo drugs, but I've been lazy about blogging lately. I'm on a chemo vacation while I get ready for the next treatment. So, I've been squeezing in all kinds of things. I went to the movies four times in the past week-plus.
And now the moment you've all been waiting for. Drumroll, please. tatatatatatatata... I chose to go with the clinical trial. Here is my thought process: The other choice was a treatment I was on right after my surgeries. That kept the cancer from coming back while I was on it. But I didn't have any signs of cancer then. So, I'm not 100% sure it would shrink the tumors I have now. Also, the clinical trial is said to have a lot less side effects. Why not give myself a chance to see if it works? Because if it does, I could take it for a long time and feel normal. Live normal. Be normal. That's all I really want, anyway, when you come down to it.
What does the clinical trial entail? Well, every week I have to eat all green sprouts and bamboo chips and bathe in algae-filled water. Wait, wait, wait...that's not right. Ugh, I thought I was looking at the paperwork for the study, but it was a pamphlet on how to take care of your pet panda. Where did I pick up that literature? Chemo brain...I don't recall.
Okay, here is the study's paperwork. For one week, I will take two drugs. Then I don't take anything for the next three weeks. One drug is a chemo that is proven on brain cancer and melanoma. The other is the experimental drug. That is called a PARP inhibitor. PARP is the ability for a cell to repair itself when it's damaged at the DNA level. The theory is that the chemo will work better if the cancer cells can't repair themselves. We shall see.
I'm hopeful, worried, anxious, excited. Let's just start already. D-Day is 23 November. Here is the fun part. I have to take the pills twice a day and I can't eat or drink for two hours prior and one hour post. That is six hours a day I cannot eat or drink. For a guy trying not to lose weight every day, that stinks. And Thanksgiving is during my first week of it! I'll have to set my alarm for 1am to wake up and eat turkey and filling (It's called filling in central PA. Basically, it's bread stuffing mixed with smashed potatoes. There. I like to keep my blog educational as well as sexy and scary.)
And now the moment you've all been waiting for. Drumroll, please. tatatatatatatata... I chose to go with the clinical trial. Here is my thought process: The other choice was a treatment I was on right after my surgeries. That kept the cancer from coming back while I was on it. But I didn't have any signs of cancer then. So, I'm not 100% sure it would shrink the tumors I have now. Also, the clinical trial is said to have a lot less side effects. Why not give myself a chance to see if it works? Because if it does, I could take it for a long time and feel normal. Live normal. Be normal. That's all I really want, anyway, when you come down to it.
What does the clinical trial entail? Well, every week I have to eat all green sprouts and bamboo chips and bathe in algae-filled water. Wait, wait, wait...that's not right. Ugh, I thought I was looking at the paperwork for the study, but it was a pamphlet on how to take care of your pet panda. Where did I pick up that literature? Chemo brain...I don't recall.
Okay, here is the study's paperwork. For one week, I will take two drugs. Then I don't take anything for the next three weeks. One drug is a chemo that is proven on brain cancer and melanoma. The other is the experimental drug. That is called a PARP inhibitor. PARP is the ability for a cell to repair itself when it's damaged at the DNA level. The theory is that the chemo will work better if the cancer cells can't repair themselves. We shall see.
I'm hopeful, worried, anxious, excited. Let's just start already. D-Day is 23 November. Here is the fun part. I have to take the pills twice a day and I can't eat or drink for two hours prior and one hour post. That is six hours a day I cannot eat or drink. For a guy trying not to lose weight every day, that stinks. And Thanksgiving is during my first week of it! I'll have to set my alarm for 1am to wake up and eat turkey and filling (It's called filling in central PA. Basically, it's bread stuffing mixed with smashed potatoes. There. I like to keep my blog educational as well as sexy and scary.)
Wednesday, October 28, 2009
Took the words out of my mouth...
My newest best friend I met less than two months ago. We were part of a gathering in Little Rock, AR for the "Big Dam Walk." It was a walk for colon cancer over a big damn. A bunch of past and present Colondar models were in attendance. That included Becca (http://www.colonclub.com/2008August.html). Somehow people were just drawn to her...myself included. Anyhoo...she and I were up talking at 3am last night. (A common thing for people on chemo is insomnia.) We are both stage IV colon cancer survivors and we have a bunch in common with cancer, but it has also caused us to think a lot alike.
I didn't know until last night that she kept a blog, too. I read an entry she wrote this week. I felt like I had dictated it to her. Her thoughts are exactly mine. And since she already put them into words, I would like to share: (either click the link to her blog or read the text below)
http://thecolonchronicles.blogspot.com/2009/10/life-support-in-our-social-networking.html
When you are diagnosed, you have a few choices in terms of ways in which to cope. Among those choices are things like support groups, or networking groups of other people with cancer. In our social-networking-crazed world, its also easy (if almost impossible NOT) to build a community of cancery-people online. All the myriad of websites with message boards, email groups, blogs and of course...the big bad daddy of 'em all, Facebook. Over the years, I've met people who've either been through the same things I have for colon cancer, OR have had various cancers of their own but for some reason or another, we've connected and relate to each other. Sites such as The Colon Club, Imerman Angels, and Planet Cancer to name a few, have allowed me to either reach out to, or be reached by a huge network of patients/survivors/caregivers, etc. Many of these people I keep in more regular contact with via Facebook.
I actually have my "friends lists" in my Facebook broken down into "Colon Cancer People" and "Other Cancer People" and they're both pretty lengthy.
I figured it was healthy and good to have people you can vent to, and relate to in ways you never ever could to even the most well-meaning friend or family member. But inevitably, if you have a network of cancer-folk you will also lose some of those folk. And chances are, lose them to the very thing that you yourself are fighting. No matter how close you were to a person, or how long you knew them, ANY interaction in the cancer world, even a brief one, can form an intense bond.
I've posted on here before about someone I knew and was close to, passing away from her cancer. And in the time since then (roughly a year ago) several others I've met have passed away from it as well.
As of late I've been mulling over whether having this community of cancer-folk is actually a good and healthy thing after all? I recently was in an email discussion back n forth with a handful of other colon cancer survivors (of various lengths of time) and one of them made a comment about how he was glad he was finally getting "past this cancer crap" and beginning to "move on with life". It wasn't a comment directed at me specifically, but at the group as a whole. Many in the group had cancer quite a number of years ago (8, 10, 13 etc). Just those simple comments were enough to simultaneously enrage me with jealousy, and fill me with sadness and resentment.
I would LOVE to be able to get past cancer. I would give anything to be able to move on with life. I don't see how that is ever possible for me however. I mean, yes, I can still do other things and not dwell day to day on cancer, cancer, cancer. I can try my best to not let it consume me every minute of every hour. But ultimately the fact still remains that every day, twice a day, I have to remember to take my chemo pills. And every week, for an hour or so every week, I have to truck myself up to the burbies to get an infusion at my oncologists office. The time in between all of that, I am sometimes lucky to be able to distract myself and not think about my ultimate demise, or perhaps any of the MANY ramifications that come about from having cancer, or being on treatment. Although, successful in that as I may be, I can easily log into facebook or even just check my email and instantly be reminded about it in someway. Some friend will post about how a scan has come back clear! Or another will send a link to an awesome organization we cancery-people should know about. Or maybe there's a fundraiser, young adult cancer-mixer, or a walk/run for awareness we should support. Or...and these are the "or's" you begin to dread: You randomly happen upon a friends profile page in passing only to realize from the comments posted that a person who, not more than a week prior, you were reading about them celebrating a 27th birthday...or who that VERY day you had just addressed a birthday card to send to her, belated of course...apparently just passed away the day before. I don't know whats more sad, the fact that someone you know just died way too young and for not a good enough reason...or the fact that you find out on a website...or the fact that its not all that uncommon of an thing.
I begin to think about how if I didn't know all these people...all these wonderful, amazing, remarkable, hilarious, strong, intelligent, accomplished, loving, kind people...that I wouldn't have nearly as much sadness and sorrow. To be fair, with or without knowing them, I have my fair share of it. But with knowing all of these new friends, I've expanded the potential for grief many times over. So is that good for your psyche? Is it healthy and healing to have to continuously face the end result to things in which you yourself are facing? In the same respect if I ignored all these new friends. If i disassociated myself from all the organizations I've connected to that do so much towards cancer-support...is that any healthier? Would denial be any better of a way to cope? Common knowledge would lead me to think no. But I would be remiss if I did not admit that I don't always believe common knowledge knows what the hell it's talking about!! Of course, ultimately, there isn't a right or wrong answer. However, I'd love to hear others thoughts on this matter.
I didn't know until last night that she kept a blog, too. I read an entry she wrote this week. I felt like I had dictated it to her. Her thoughts are exactly mine. And since she already put them into words, I would like to share: (either click the link to her blog or read the text below)
http://thecolonchronicles.blogspot.com/2009/10/life-support-in-our-social-networking.html
When you are diagnosed, you have a few choices in terms of ways in which to cope. Among those choices are things like support groups, or networking groups of other people with cancer. In our social-networking-crazed world, its also easy (if almost impossible NOT) to build a community of cancery-people online. All the myriad of websites with message boards, email groups, blogs and of course...the big bad daddy of 'em all, Facebook. Over the years, I've met people who've either been through the same things I have for colon cancer, OR have had various cancers of their own but for some reason or another, we've connected and relate to each other. Sites such as The Colon Club, Imerman Angels, and Planet Cancer to name a few, have allowed me to either reach out to, or be reached by a huge network of patients/survivors/caregivers, etc. Many of these people I keep in more regular contact with via Facebook.
I actually have my "friends lists" in my Facebook broken down into "Colon Cancer People" and "Other Cancer People" and they're both pretty lengthy.
I figured it was healthy and good to have people you can vent to, and relate to in ways you never ever could to even the most well-meaning friend or family member. But inevitably, if you have a network of cancer-folk you will also lose some of those folk. And chances are, lose them to the very thing that you yourself are fighting. No matter how close you were to a person, or how long you knew them, ANY interaction in the cancer world, even a brief one, can form an intense bond.
I've posted on here before about someone I knew and was close to, passing away from her cancer. And in the time since then (roughly a year ago) several others I've met have passed away from it as well.
As of late I've been mulling over whether having this community of cancer-folk is actually a good and healthy thing after all? I recently was in an email discussion back n forth with a handful of other colon cancer survivors (of various lengths of time) and one of them made a comment about how he was glad he was finally getting "past this cancer crap" and beginning to "move on with life". It wasn't a comment directed at me specifically, but at the group as a whole. Many in the group had cancer quite a number of years ago (8, 10, 13 etc). Just those simple comments were enough to simultaneously enrage me with jealousy, and fill me with sadness and resentment.
I would LOVE to be able to get past cancer. I would give anything to be able to move on with life. I don't see how that is ever possible for me however. I mean, yes, I can still do other things and not dwell day to day on cancer, cancer, cancer. I can try my best to not let it consume me every minute of every hour. But ultimately the fact still remains that every day, twice a day, I have to remember to take my chemo pills. And every week, for an hour or so every week, I have to truck myself up to the burbies to get an infusion at my oncologists office. The time in between all of that, I am sometimes lucky to be able to distract myself and not think about my ultimate demise, or perhaps any of the MANY ramifications that come about from having cancer, or being on treatment. Although, successful in that as I may be, I can easily log into facebook or even just check my email and instantly be reminded about it in someway. Some friend will post about how a scan has come back clear! Or another will send a link to an awesome organization we cancery-people should know about. Or maybe there's a fundraiser, young adult cancer-mixer, or a walk/run for awareness we should support. Or...and these are the "or's" you begin to dread: You randomly happen upon a friends profile page in passing only to realize from the comments posted that a person who, not more than a week prior, you were reading about them celebrating a 27th birthday...or who that VERY day you had just addressed a birthday card to send to her, belated of course...apparently just passed away the day before. I don't know whats more sad, the fact that someone you know just died way too young and for not a good enough reason...or the fact that you find out on a website...or the fact that its not all that uncommon of an thing.
I begin to think about how if I didn't know all these people...all these wonderful, amazing, remarkable, hilarious, strong, intelligent, accomplished, loving, kind people...that I wouldn't have nearly as much sadness and sorrow. To be fair, with or without knowing them, I have my fair share of it. But with knowing all of these new friends, I've expanded the potential for grief many times over. So is that good for your psyche? Is it healthy and healing to have to continuously face the end result to things in which you yourself are facing? In the same respect if I ignored all these new friends. If i disassociated myself from all the organizations I've connected to that do so much towards cancer-support...is that any healthier? Would denial be any better of a way to cope? Common knowledge would lead me to think no. But I would be remiss if I did not admit that I don't always believe common knowledge knows what the hell it's talking about!! Of course, ultimately, there isn't a right or wrong answer. However, I'd love to hear others thoughts on this matter.
Tuesday, October 27, 2009
What to wear for Halloween...
Well, I got the results of my CT scan yesterday. It wasn't the shrinkage I was hoping for. Instead the tumors have grown...just slightly, but still. Also, there are a couple more. None of this is great news. But it's not a disaster. I have options.
One of the options is a clinical trial. This particular trial doesn't have any data to go by other than it worked in testing on animals, and they figured out the dosage needed. So I'd be stage three of the trial. The good news is that this combo of drugs doesn't seem to have any side effects. And I'd only do it for two months and then we would scan. If it isn't working, I could try the next option.
Another option I have is the drug treatment I was on after my surgeries. That "seemed" to work, but who really knows. The surgery removed the tumors and the chemo simply kept it from coming back for a year. But were things just starting to grow from nothing while I was on it?
So which do I choose? I wanted my biggest decision this week to be my Halloween costume, but instead I have to choose a drug that might work and save my life. I can't wait until the day when "What should I have for lunch?" is back in my thoughts.
I'm still here, so "We have one more game!"
One of the options is a clinical trial. This particular trial doesn't have any data to go by other than it worked in testing on animals, and they figured out the dosage needed. So I'd be stage three of the trial. The good news is that this combo of drugs doesn't seem to have any side effects. And I'd only do it for two months and then we would scan. If it isn't working, I could try the next option.
Another option I have is the drug treatment I was on after my surgeries. That "seemed" to work, but who really knows. The surgery removed the tumors and the chemo simply kept it from coming back for a year. But were things just starting to grow from nothing while I was on it?
So which do I choose? I wanted my biggest decision this week to be my Halloween costume, but instead I have to choose a drug that might work and save my life. I can't wait until the day when "What should I have for lunch?" is back in my thoughts.
I'm still here, so "We have one more game!"
Monday, October 19, 2009
Colondar sales...
I gotta say that I think being on chemo is a great marketing idea! My goal is to sell 300 Colondars and I'm at 220, now. But, now is the tougher sell. Most people I know who want one have already bought one. If you are one of those people who want one, but haven't told me...then let me know! Eighty to go!!!
The money goes for a couple of things...colon cancer awareness and also to support the next Colondar. Being part of the Colondar has helped me SO much. Three weeks after meeting all these people who have been in my situation, I was diagnosed with my recurrence. I can't tell you how much that has helped me. So, I'm asking you to help me help someone else. If you are looking for a holiday gift, Colondars are great!
The money goes for a couple of things...colon cancer awareness and also to support the next Colondar. Being part of the Colondar has helped me SO much. Three weeks after meeting all these people who have been in my situation, I was diagnosed with my recurrence. I can't tell you how much that has helped me. So, I'm asking you to help me help someone else. If you are looking for a holiday gift, Colondars are great!
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