I've been doing a lot of thinking lately, well ok, I always do a lot of thinking. I have some ideas about immortality, but I'm going to save them for the next entry. Today will simply be a cancer update.
I'm better. I'm not great, but I'm certainly better than, say, a month ago. I've spent the last few weeks recouping at dad's. This week I was able to drag my ass in to my office twice. I'm not able to stand a full day, but still, it's a step. I'm thin, very thin, disgustingly thin. I came out of the hospital 190 pounds, and three weeks later I'm still 190 pounds. I don't like being this thin. I feel like all I've done for the last few weeks is eat, but still no weight. My sister reminded me, as she often has to do since my brain seems to be nothing more than a giant sieve, that this is how it always happens. I stay thin for 4 or 5 weeks, and then BAM, lots of weight. I guess we'll have to see.
I had a ct scan last week. The scan was to check on how the infection was doing. I was on IV antibiotics at home, and the doctor wouldn't stop them until a ct scan showed him I was clean. Well...I'm clean. No more infection. So that's good news! I went to see my surgeon last Monday. He said my surgical wounds are healing very well, and it should only be a few more weeks before they're all closed up. Also, he took a glance at the ct scan and told me that my innards look to be in good shape. There are no obvious signs of growth. Now he wouldn't say the words, that is for my oncologist, but what he hinted at is that there are no signs of cancer. Yes, this is good news. BUT, let's temper it with a bit of reality. I've had clean ct scans in the last couple of years. They are not the end-all-be-all for diagnosing cancer, especially my cancer. As we all know by now, I will always have cancer, it's just going to be a matter of degree. I am going to see my oncologist in April and we'll find out more then.
Tomorrow, as some of you may or may not know, is my birthday. I'll be 38. 40 is just around the damn corner. For my birthday.........I'm going home!!!! I'm moving back into my own apartment tomorrow, after a 3 and 1/2 month hiatus. I'm really looking forward to it. Some friends are going to come by and help me settle back in. I'll make them some dinner and then we'll just relax at my place. Sure 10 years ago this would not have passed for a birthday party, but then again I was a totally different person, with about 100 more pounds on me. (did I mention that I'm very thin?)
There are a lot of things going on for me right now. Work is changing, I've got some trips coming up, and then there's always the cancer. I'm pretty sure my next couple of blogs will be a bit more profound and introspective, so perhaps you'll want to skip those.
Friday, March 23, 2007
Monday, March 12, 2007
Jesse is a friend, you know he's been a good friend of mine
As I've mentioned before, cancer brings with it a wide variety of other physical and emotional tribulations. During my most recent sojourn at the Hotel De Hackensack I experienced two physical events for the first time; I passed out, and I hallucinated.
During the last week I was in the hospital, on Wednesday my doctor told me I would be discharged on Friday. When Friday rolled around, I was told I couldn't leave, maybe Saturday. On Saturday I was told I couldn't leave, maybe Sunday. On Sunday, blah blah blah, until I was discharged on Tuesday. The reason the carrot was yanked away so many times was because the level of a drug I regularly take called Coumadin, was not high enough. I take this drug to prevent blood clots, but when I'm in the hospital for surgery, they need to stop this medicine. Blood clotting is very important when it comes to surgery. Playing the "not today, maybe tomorrow" game has happened every time I've been in for surgery. Knowing this would be an issue, I tried to make it a point to let all my doctors know that we needed to start the Coumadin again early, so I wouldn't have to delay my discharge. Of course, nobody payed attention and so I spent an extra 4 days. Sure, 4 days doesn't seem all that long, but when you consider that I was laying in that bed for 2 months, those 4 days felt like an eternity. On that Sunday, a physical therapist came by to walk with me. Walking is a difficult process after you've been supine for 2 months, and so I needed therapy for it. Most times it's a pleasant enough experience. The therapists are nice, and it does feel good to get out of the room, if even for just a couple of minutes. But on that day I was pissed and determined to show everyone that I was fine; fine enough to be sent home and fine enough to take care of myself. The therapist wanted to try some steps, so I jumped out of bed and made my way, grunting and mumbling under my breath, to the stairwell. I went through the door, I looked up at the top of the staircase and started to feel light headed. I grabbed for the hand rail as I heard the therapist calling my name, yelling, asking if I was ok. The hallway went dark. The next thing I knew there were about 10 people all around me, the therapist was waving smelling salts under my nose, and a large orderly was trying to get me to sit in a wheel chair. I passed out. Not your "been drinking since 11 this morning and need to nap" pass out, but actually passed out. This is not something I recommend.
The other event was when I hallucinated. I'm not talking about when you've been sitting at the bar, it's now 3 am, the bartender is ushering the glasses through their three sink dance, the bouncer is flipping over the bar stools and placing them atop the bar so that the cleaning crew can have full and clear access to mop the floor and clean the grit and grime you and your friends trod around in all night, and OH MY GOD that chick at the end of the bar is the hottest thing ever!! I'm talking about my mind telling me that my sister is sitting right beside me, discussing the most recent insanity of our father, while in reality she is most likely tired and fed up at the end of her shift, and on her way home. The doctors at Hackensack, and probably other hospitals as well, are very concerned with a patient's pain. They feel that pain intrudes on the body's natural process of healing, so they are very generous with pain medication. After my surgery they placed me on a PCA (patient controlled analgesia) iv pump. The pump has a little button, which the patient is supposed to press to deliver the pain medicine. Depending on an assortment of factors, the pump is set to only allow a certain amount of medicine to be dispensed in a certain time period. The first few times I had this pca, the drug of choice was morphine. My sister said that I had a reaction the last time I had the morphine (it's these parts of my recovery, right after the surgery, that I have trouble remembering so if Chrissy says it's so, it's so) so this time they hooked me up to a drug called dilaudid. I stayed on the pca pump about two days too long. The last couple of days, I would be in the middle of a conversation with my sister, or my father, or one of my friends, my hands flying around in mid sentence, and I would wake up, clear up really, and realize that nobody was there. These weren't dreams, I wasn't asleep. The presence of another person was incredibly real. My mind vaguely understood what was going on and I had to force myself to not press that button unless I truly needed it. After a couple of days of lower dosing, I was clear enough to let people know that it may have been time to change off the dilaudid.
And they said cancer wouldn't be fun...
During the last week I was in the hospital, on Wednesday my doctor told me I would be discharged on Friday. When Friday rolled around, I was told I couldn't leave, maybe Saturday. On Saturday I was told I couldn't leave, maybe Sunday. On Sunday, blah blah blah, until I was discharged on Tuesday. The reason the carrot was yanked away so many times was because the level of a drug I regularly take called Coumadin, was not high enough. I take this drug to prevent blood clots, but when I'm in the hospital for surgery, they need to stop this medicine. Blood clotting is very important when it comes to surgery. Playing the "not today, maybe tomorrow" game has happened every time I've been in for surgery. Knowing this would be an issue, I tried to make it a point to let all my doctors know that we needed to start the Coumadin again early, so I wouldn't have to delay my discharge. Of course, nobody payed attention and so I spent an extra 4 days. Sure, 4 days doesn't seem all that long, but when you consider that I was laying in that bed for 2 months, those 4 days felt like an eternity. On that Sunday, a physical therapist came by to walk with me. Walking is a difficult process after you've been supine for 2 months, and so I needed therapy for it. Most times it's a pleasant enough experience. The therapists are nice, and it does feel good to get out of the room, if even for just a couple of minutes. But on that day I was pissed and determined to show everyone that I was fine; fine enough to be sent home and fine enough to take care of myself. The therapist wanted to try some steps, so I jumped out of bed and made my way, grunting and mumbling under my breath, to the stairwell. I went through the door, I looked up at the top of the staircase and started to feel light headed. I grabbed for the hand rail as I heard the therapist calling my name, yelling, asking if I was ok. The hallway went dark. The next thing I knew there were about 10 people all around me, the therapist was waving smelling salts under my nose, and a large orderly was trying to get me to sit in a wheel chair. I passed out. Not your "been drinking since 11 this morning and need to nap" pass out, but actually passed out. This is not something I recommend.
The other event was when I hallucinated. I'm not talking about when you've been sitting at the bar, it's now 3 am, the bartender is ushering the glasses through their three sink dance, the bouncer is flipping over the bar stools and placing them atop the bar so that the cleaning crew can have full and clear access to mop the floor and clean the grit and grime you and your friends trod around in all night, and OH MY GOD that chick at the end of the bar is the hottest thing ever!! I'm talking about my mind telling me that my sister is sitting right beside me, discussing the most recent insanity of our father, while in reality she is most likely tired and fed up at the end of her shift, and on her way home. The doctors at Hackensack, and probably other hospitals as well, are very concerned with a patient's pain. They feel that pain intrudes on the body's natural process of healing, so they are very generous with pain medication. After my surgery they placed me on a PCA (patient controlled analgesia) iv pump. The pump has a little button, which the patient is supposed to press to deliver the pain medicine. Depending on an assortment of factors, the pump is set to only allow a certain amount of medicine to be dispensed in a certain time period. The first few times I had this pca, the drug of choice was morphine. My sister said that I had a reaction the last time I had the morphine (it's these parts of my recovery, right after the surgery, that I have trouble remembering so if Chrissy says it's so, it's so) so this time they hooked me up to a drug called dilaudid. I stayed on the pca pump about two days too long. The last couple of days, I would be in the middle of a conversation with my sister, or my father, or one of my friends, my hands flying around in mid sentence, and I would wake up, clear up really, and realize that nobody was there. These weren't dreams, I wasn't asleep. The presence of another person was incredibly real. My mind vaguely understood what was going on and I had to force myself to not press that button unless I truly needed it. After a couple of days of lower dosing, I was clear enough to let people know that it may have been time to change off the dilaudid.
And they said cancer wouldn't be fun...
Thursday, March 01, 2007
Oh my! Where has all the time gone?
Yes, my dear friends, it has been a while since I've let you all in on my condition. Yes, this blog was specifically set up for just that purpose. Yes, I even had internet access while in the hospital. I'm just a bad friend is all.
Last you heard, I was going to be in the hospital for a couple of weeks. Well, let me tell you something; that did not really go as planned. Turns out that all the vomitting I was doing may not have been just a reaction to my chemo. The doctors took some pictures and checked the jam-cam in my colon and found a blockage. After some non-invasive attempts to relieve the blockage didn't work, it was time to call in the surgeon. I'm pretty sure I've said this before, but it bears repeating; my surgeon totally rocks!!! I think if he had gone to Bethany, or any of the other fine institutions of higher learning which I attended, we may have hung out and gotten drunk together. My surgeon said that since they were going to open me up to remove the blockage he might as well go ahead and take out all the cancery stuff. And that's what he did. He removed what was left of the tumor, (quick side note, after only two treatments of the new chemo, that tumor had already shrunk in half) lymph nodes, some intestine, and some other areas that they suspected some cancer cells might be. All my margins came back clean. All of this means that there are no obvious signs of cancer in my abdomen at this time. Now, before you go all jump-for-joy on me, just know that it doesn't mean I'm in remission. There may still be some cells swimming around somewhere, which has been the case before. Only a pet scan will show for sure. That's coming up soon. Also, if you've been following along you already know that I'll never really get rid of the cancer, but will be able to live with it in check. That should have been it, I should have been out of the hospital by the end of January, but of course my body has to be difficult.
Right around the day I was supposed to go home, I started spiking fevers and feeling generally run down. Turns out I developed an infection in the surgical sites. This has happened before, so now my surgeon says "this is just how your body deals with it", it's an inevitability. This meant another surgery, to clean it out, and a few more weeks in the hospital, which works out to be about 150 more hours of the food network. I can't really eat right now, but I have a million recipes I want to try out.
February came and went while I was flat on my back in the post-surge ward. I finally made it out of there on the 27th. I'm at my dad's right now, recovering. I still have open wounds from the last surgery and I have to take iv antibiotics about 4 times a day. I'm also pretty weak and probably under 200 pounds. Two months in the hospital will do that to ya. I'm getting a little better every day, and should be back to some sense of normalcy in two or three weeks, which is cool since I have a birthday coming up right around that time.
That's the long and short of it my friends. My last two months in a nutshell. There is some work to be done. I need to get my strength back and still have to go back for some chemo, but the year is looking up. I am going to try and hit Europe in the spring, there's a couple of weddings this summer, and maybe a trip to San Fran in the fall. I've had my beat down mental days, but as always I have a slightly skewed optimism. I love all of you, and thanks for all the cards/flowers/balloons/candy/phone calls/text messages/emails!!! I'll hit ya with some more cancer tainted wisdom soon.
Last you heard, I was going to be in the hospital for a couple of weeks. Well, let me tell you something; that did not really go as planned. Turns out that all the vomitting I was doing may not have been just a reaction to my chemo. The doctors took some pictures and checked the jam-cam in my colon and found a blockage. After some non-invasive attempts to relieve the blockage didn't work, it was time to call in the surgeon. I'm pretty sure I've said this before, but it bears repeating; my surgeon totally rocks!!! I think if he had gone to Bethany, or any of the other fine institutions of higher learning which I attended, we may have hung out and gotten drunk together. My surgeon said that since they were going to open me up to remove the blockage he might as well go ahead and take out all the cancery stuff. And that's what he did. He removed what was left of the tumor, (quick side note, after only two treatments of the new chemo, that tumor had already shrunk in half) lymph nodes, some intestine, and some other areas that they suspected some cancer cells might be. All my margins came back clean. All of this means that there are no obvious signs of cancer in my abdomen at this time. Now, before you go all jump-for-joy on me, just know that it doesn't mean I'm in remission. There may still be some cells swimming around somewhere, which has been the case before. Only a pet scan will show for sure. That's coming up soon. Also, if you've been following along you already know that I'll never really get rid of the cancer, but will be able to live with it in check. That should have been it, I should have been out of the hospital by the end of January, but of course my body has to be difficult.
Right around the day I was supposed to go home, I started spiking fevers and feeling generally run down. Turns out I developed an infection in the surgical sites. This has happened before, so now my surgeon says "this is just how your body deals with it", it's an inevitability. This meant another surgery, to clean it out, and a few more weeks in the hospital, which works out to be about 150 more hours of the food network. I can't really eat right now, but I have a million recipes I want to try out.
February came and went while I was flat on my back in the post-surge ward. I finally made it out of there on the 27th. I'm at my dad's right now, recovering. I still have open wounds from the last surgery and I have to take iv antibiotics about 4 times a day. I'm also pretty weak and probably under 200 pounds. Two months in the hospital will do that to ya. I'm getting a little better every day, and should be back to some sense of normalcy in two or three weeks, which is cool since I have a birthday coming up right around that time.
That's the long and short of it my friends. My last two months in a nutshell. There is some work to be done. I need to get my strength back and still have to go back for some chemo, but the year is looking up. I am going to try and hit Europe in the spring, there's a couple of weddings this summer, and maybe a trip to San Fran in the fall. I've had my beat down mental days, but as always I have a slightly skewed optimism. I love all of you, and thanks for all the cards/flowers/balloons/candy/phone calls/text messages/emails!!! I'll hit ya with some more cancer tainted wisdom soon.
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