As I write this I am about two and a half years out of my cancer diagnosis and treatment. Aside from a little skin cancer scare (which turned out was nothing) one could say I have been done with cancer. However, that is not exactly how it works in the cancer game.
There are so many questions as to when you are officially no longer a cancer patient. Was it the surgery? The chemo? When you quit going to an oncologist? Or when you finally pay off all your medical bills? (In which case I will never be done.) In many ways I no longer feel like a cancer patient, but at the same time, at the beginning of every month I look at my calendar and see what doctors appointments I have this round. It is hard to feel "well" or "cured" when you are sitting in a waiting room all of the time. I mean who needs a People magazine subscription when you can read it for free every month while you wait for the nurse to call your name? The good news is the frequency of the appointments slowly grows further and further apart. I think I am down to CT scans once a year now (so I only have to drink a half gallon of nasty tasting water a year).
The funny thing is, because of the doctors' good reports you feel like your not well. Because of the type of work I do, I tend to run into people that I haven't seen for months or even a year and they always ask how I am doing With the frequency of doctors appointments my answer is usually,"Well, I was just at the doctor and they said I was fine." That is the Catch 22 of being in monitoring, you have to see an "ist" each month (oncologist, urologist, gastroenterologist, etc.) but at least they say you are doing good each time. You don't feel like you can say "Oh, the cancer thing is over." because you are still seeing an oncologist, but at the same time you don't feel like a real cancer patient because you are not having to go through any treatment.
On one hand, it is nice to have the peace of mind every month that you are safe for four more weeks. On the other hand things get so routine, you wonder why you are paying more and more for something you could probably do yourself at this point. Heck, I am in and out of my urologist's office so fast, I could probably just drive by his office slowly with my scrotum hanging out the car window and toss out my co-pay.
I think the biggest part of not feeling "over" cancer is the mental aspect of it. Every bump, twitch, even feeling tired when you don't think you should makes you wonder if just maybe it's something bigger. And not even your thoughts are safe. My one-year-old had been going through a phase where he wants me to hug me, or have me hold him, or just lean against me. Most people would just understand it is the clingy phase that all toddlers go through, but my mind wondered if he wasn't sensing something, that maybe I wouldn't be around much longer and he needed to get his quality time in while I was still alive.
Even happy dreams aren't safe. I know two people that have flatlined on operating tables and come back to life. They both tell of people that have died greeting them at the end of the tunnel and telling them that it's not their time yet to go back to earth. I have had some friends die and some family members die, but only one person in my life has died that I saw everyday, and would spend an hour just talking to everyday about whatever. Well, that person was in my dream the other night. He welcomed me into Heaven, showed me around, and we picked up on conversations we started before he died. I woke up feeling so good knowing that if I died, this person would be the one that brought me through the tunnel and took me to see my other friends and family that have already passed. But that good feeling quickly turned to dread, as I wondered why I was dreaming about dying and does my body know something that it hasn't shared with my brain yet. Maybe part of my brain does know and it is just not sharing the information with the rest of my brain the same way it does when I ask it where I put the car keys.
The biggest joy I have in life is watching my son play, which we weren't even sure we were going to be able to have when all this started. Even while sitting there just watching him run around like a drunk kamikaze gymnast, I worry about recurrence and not being around to watch him grow up. Or not being around and maybe his only memory of me will be me yelling at him to quit splashing in the dogs' water dish (which to be fair is something I do approximately 1500 times everyday).
So am I done with cancer? The doctors say "yes" but then tell me to schedule an appointment to come back and make sure it's still "yes". Physically, outside of underwear not fitting quite the way it used to, I feel like I am done with cancer. Mentally, the chemo fog has cleared up, but there is always that cancer cloud hanging over me, just like a summertime meteorologist's permanent "30% chance of storms". The ironic thing is the more my son shines the more I worried I get about that cancer cloud. But until then I will enjoy every second I get to spend with my son, even the hours on end I spend pulling him out of the dog dish, and hopefully live long enough to teach him how to check for testicular cancer on himself one day.
Showing posts with label CTscan dye. Show all posts
Showing posts with label CTscan dye. Show all posts
Wednesday, March 27, 2013
Wednesday, August 10, 2011
An Xray, 3 Blood Tests, And A CATscan Down, Now Shove A Camera Down My Throat
I am finishing up my latest round of scans. In the past three weeks, it seems I have been tested every other day. I haven't actually been tested every other day, but medical providers have still found a way to bill me every other day. So far I have finished a chest X-ray, a CATscan, CBC, tumor marker blood test, and in a matter of hours a upper endoscopy (with jumbo biopsies, YIPPEE!), oh yeah and peeing into the random cup every once in a while too. I just hope I was supposed to pee in that one cup, because the nurse gave me a funny look, and I don't remember specimen cups saying "Moe's Southwest Grill" on the side...
The X-rays were as expected. I raise my hands above my head while the nurse shoves me against the wall like she's on COPS and I am an unruly suspect (one time I accidentally yelled out "Don't tase me bro" during the test). The blood and urine tests were pretty routine as well. I get asked for a body fluid, and I deposit it into whatever receptacle they hold in front of me. The only problem was a slight miscalculation on driving time/fluid intake, which required me to make the receptionist wait for my insurance co-pay until after I gave them a sample.
The one thing I wasn't expecting was a CATscan. When I decided to do chemo over testing (mainly dozens of CATscans) I knew I would still have to get the occasional CATscan, I just wasn't expecting it to be so soon after my last oncologist appointment. As soon as he ordered it, I had flashbacks of the taste of the contrast dye and the associated CATstipation. Not wanting to roll around on the floor in impacted and backed up pain again, I had taken two liter bottles of water with me to do some mega-hydrating on the drive back from the hospital. Luckily, I didn't start drinking them yet, because when I arrived I was told I would not be drinking the slightly flavored chalky substance. They had a new water based contrast, but I had to drink a liter of it in an hour. Still skeptical, I apprehensively took a taste. It tasted like Terre Haute water, which for those of you that haven't been to/smelled Terre Haute, IN, it kinda taste like...well...have you ever put a cooler away and forgotten to drain it? Well, it kinda tastes like that smells. Not good, but not bad either, and definitely better than the nasty, chalky, constipatitiony, bottomless cup of sludge that I had to drink before.
Within a few days, I got all of my results back, X-ray's and scans were clean. Urine and blood tests were normal, and tumor marker's still dropping. So now I am preparing for my endoscopy tomorrow. My preparation involves mainly not eating after midnight and not sleeping. I have literally had more scopes than I can count, all I know is that I am in double digits, and I have developed a routine. I stay up late the night before, I go into the hospital barely awake, I get some Demerol shoved in my vein, and I wake up with my wife giving me dirty looks because I apparently won't wake up and I ask the same questions over and over again.
See, in my long history of scopes, there are two things I don't like about them. One time I woke up when they snapped the plastic guide between my teeth, and the feeling/sound was not a pleasant experience. Now they say you don't remember anything from the scope, but obviously if I just told you about that, I did remember it, because they don't put that thing in your mouth before you go in there and it is out before you wake up, so the only way I would know about it is to wake up during the procedure, and remember it (and I also remember hearing the doctor say, "He's waking up, give him so more."). The other thing, is for some reason the oxygen tube that they stick in your nose, makes me feel like I am drowning. OK, OK, I will wait for you to quit laughing at me. Are you done? So, I don't know why I have that feeling, but I do. If I am totally out, it's no big deal. If I am kinda out, I wake up, thrashing saying I can't breathe (which just by saying "I can't breathe" it proves I can breathe, but anyway), and before I know it I am sedated again and I wake up with straps on my arms. For the comfort and safety of myself and the nurses attending to me, I have found that we are all much happier, if I am completely out of it during the scope.
As far as tests go, an endoscopy really isn't that bad. The bad thing is, they keep you from eating for so long before, and for my condition they take out large biopsies in my throat to send to a pathologist, which leaves me waking up starving, but yet it hurts to swallow. It's like some cruel joke the doctor's and nurses play on me, maybe in some sort of retaliation for thrashing around during the procedure acting like I'm drowning. At any rate, I am ready to get this test over with and anxious to hear my results. With this test behind me I am through with doctors (for me) until November. Hopefully, the nurses will loosen my straps tomorrow and I can come home and tell you how everything went.
The X-rays were as expected. I raise my hands above my head while the nurse shoves me against the wall like she's on COPS and I am an unruly suspect (one time I accidentally yelled out "Don't tase me bro" during the test). The blood and urine tests were pretty routine as well. I get asked for a body fluid, and I deposit it into whatever receptacle they hold in front of me. The only problem was a slight miscalculation on driving time/fluid intake, which required me to make the receptionist wait for my insurance co-pay until after I gave them a sample.
The one thing I wasn't expecting was a CATscan. When I decided to do chemo over testing (mainly dozens of CATscans) I knew I would still have to get the occasional CATscan, I just wasn't expecting it to be so soon after my last oncologist appointment. As soon as he ordered it, I had flashbacks of the taste of the contrast dye and the associated CATstipation. Not wanting to roll around on the floor in impacted and backed up pain again, I had taken two liter bottles of water with me to do some mega-hydrating on the drive back from the hospital. Luckily, I didn't start drinking them yet, because when I arrived I was told I would not be drinking the slightly flavored chalky substance. They had a new water based contrast, but I had to drink a liter of it in an hour. Still skeptical, I apprehensively took a taste. It tasted like Terre Haute water, which for those of you that haven't been to/smelled Terre Haute, IN, it kinda taste like...well...have you ever put a cooler away and forgotten to drain it? Well, it kinda tastes like that smells. Not good, but not bad either, and definitely better than the nasty, chalky, constipatitiony, bottomless cup of sludge that I had to drink before.
Within a few days, I got all of my results back, X-ray's and scans were clean. Urine and blood tests were normal, and tumor marker's still dropping. So now I am preparing for my endoscopy tomorrow. My preparation involves mainly not eating after midnight and not sleeping. I have literally had more scopes than I can count, all I know is that I am in double digits, and I have developed a routine. I stay up late the night before, I go into the hospital barely awake, I get some Demerol shoved in my vein, and I wake up with my wife giving me dirty looks because I apparently won't wake up and I ask the same questions over and over again.
See, in my long history of scopes, there are two things I don't like about them. One time I woke up when they snapped the plastic guide between my teeth, and the feeling/sound was not a pleasant experience. Now they say you don't remember anything from the scope, but obviously if I just told you about that, I did remember it, because they don't put that thing in your mouth before you go in there and it is out before you wake up, so the only way I would know about it is to wake up during the procedure, and remember it (and I also remember hearing the doctor say, "He's waking up, give him so more."). The other thing, is for some reason the oxygen tube that they stick in your nose, makes me feel like I am drowning. OK, OK, I will wait for you to quit laughing at me. Are you done? So, I don't know why I have that feeling, but I do. If I am totally out, it's no big deal. If I am kinda out, I wake up, thrashing saying I can't breathe (which just by saying "I can't breathe" it proves I can breathe, but anyway), and before I know it I am sedated again and I wake up with straps on my arms. For the comfort and safety of myself and the nurses attending to me, I have found that we are all much happier, if I am completely out of it during the scope.
As far as tests go, an endoscopy really isn't that bad. The bad thing is, they keep you from eating for so long before, and for my condition they take out large biopsies in my throat to send to a pathologist, which leaves me waking up starving, but yet it hurts to swallow. It's like some cruel joke the doctor's and nurses play on me, maybe in some sort of retaliation for thrashing around during the procedure acting like I'm drowning. At any rate, I am ready to get this test over with and anxious to hear my results. With this test behind me I am through with doctors (for me) until November. Hopefully, the nurses will loosen my straps tomorrow and I can come home and tell you how everything went.
Friday, February 11, 2011
After Cancer You Can't "Don't Worry About It"
Today I arrived early for my cancer support group. Shortly after two others came in and we were talking a bit before the rest of the group arrived. One person had missed that previous week and was asking about my results. I told her I received the results of all my tests and that the lumps in my kidneys were just cysts.
This brought on a conversation amongst the three of us, all sharing the common bond of cancer. When the lumps (or doctor's speak "masses") first showed up on my CT scan, I was told "It's probably nothing to worry about" and "Don't worry about it". All three of us in the room had heard that message at one point or another in our treatment, and all three of us found it impossible "not to worry about it". After you are told you have the Big C, any unknown is something to worry about.
Here are suggestions of things I can "not worry about". A mechanic saying the tires will need replacing by next winter but in the mean time don't worry about it. Not getting home in time to see a favorite TV show, it is now available on-demand so don't worry about it. You forgot to send a obscene e-mail forward to your friend, you can always send it later, don't worry about it. The restaurant you choose doesn't serve Pepsi, don't worry about it....well, that one actually is a pretty big deal.
My point is, doctors that haven't been through a cancer scare in their own life, don't know how hard it is not to worry about something when there is even the tiniest hint of a chance that it may be related to cancer. A friend that has helped me a lot through my journey is living eight years cancer free. For the past eight years they have flown through every exam without a problem...until this last one. They had a questionable result and were told not to worry about it. They told me that they did worry about it a lot. Luckily it turned out to be nothing to worry about, for real. But my friend's point to me was, the "not worry about it" syndrome never goes away, no matter how many good results you get in the mean time. It's a perfectly normal reaction.
Later in group, completely unrelated to our pre-group conversation, the topic came up where two people mentioned how their "don't worry about it" diagnosis went on for years and later turned out to be cancer. Now I am not saying that one shouldn't listen to their doctor's advice when told not to worry about it, but those of us who have lived through cancer and those of us who know someone who should have worried about it, we can't not worry about it. Luckily, more often that not it really is nothing to worry about.
The ironic thing is as I was preparing to write tonight, I noticed a raised bump on my eye. As most of us do in this modern age, I did a little internet research on what it could be. Most of the things on the internet say "don't worry about it" but see a doctor immediately. I bet you can guess what I am going to do as soon as the doctor's office opens.
This brought on a conversation amongst the three of us, all sharing the common bond of cancer. When the lumps (or doctor's speak "masses") first showed up on my CT scan, I was told "It's probably nothing to worry about" and "Don't worry about it". All three of us in the room had heard that message at one point or another in our treatment, and all three of us found it impossible "not to worry about it". After you are told you have the Big C, any unknown is something to worry about.
Here are suggestions of things I can "not worry about". A mechanic saying the tires will need replacing by next winter but in the mean time don't worry about it. Not getting home in time to see a favorite TV show, it is now available on-demand so don't worry about it. You forgot to send a obscene e-mail forward to your friend, you can always send it later, don't worry about it. The restaurant you choose doesn't serve Pepsi, don't worry about it....well, that one actually is a pretty big deal.
My point is, doctors that haven't been through a cancer scare in their own life, don't know how hard it is not to worry about something when there is even the tiniest hint of a chance that it may be related to cancer. A friend that has helped me a lot through my journey is living eight years cancer free. For the past eight years they have flown through every exam without a problem...until this last one. They had a questionable result and were told not to worry about it. They told me that they did worry about it a lot. Luckily it turned out to be nothing to worry about, for real. But my friend's point to me was, the "not worry about it" syndrome never goes away, no matter how many good results you get in the mean time. It's a perfectly normal reaction.
Later in group, completely unrelated to our pre-group conversation, the topic came up where two people mentioned how their "don't worry about it" diagnosis went on for years and later turned out to be cancer. Now I am not saying that one shouldn't listen to their doctor's advice when told not to worry about it, but those of us who have lived through cancer and those of us who know someone who should have worried about it, we can't not worry about it. Luckily, more often that not it really is nothing to worry about.
The ironic thing is as I was preparing to write tonight, I noticed a raised bump on my eye. As most of us do in this modern age, I did a little internet research on what it could be. Most of the things on the internet say "don't worry about it" but see a doctor immediately. I bet you can guess what I am going to do as soon as the doctor's office opens.
Sunday, November 14, 2010
Back Home Again From Indiana
I am back at home, and more importantly, back at my own computer. While there I borrowed my parents' laptop which has the convenient feature of having the cursor randomly jump on the page if your palm happens to brush the touchpad while typing. Sure it was annoying, but at least it made proofreading interesting.
Yesterday, I definitely felt the effects from my big day on the town Friday. I don't know how much longer I can blame this on the chemo and when I have to just admit I am a big lazy wimp. For right now, I will still blame chemo. But at least I felt good enough to pretty much stay awake all day and watch the crazy dogs. All six were in rare form, ranging in size from, I don't know, like nine pounds to about two fifty. Just a rough guess on those numbers. My wife and I ran into a hippo costume for dogs, and thought it would be a wonderful gift for my sister, who when she is not working to save the lives of your pets, has a hobby of finding new and innovative ways to torture her own pets, such as dressing them in hippo costumes. I will have to say, her dog looked nothing like a hippo, unless hippos are about a foot high and run around at high speeds doing figure eights and back flips. Something I did learn from the experience is apparently all dogs have the innate urge to chase hippopotami, all dogs except African bloodline basenjis, which is quite ironic. I guess since she was the only dog in the room who's bloodline would have actually seen a hippo, it was nothing novel to her.
And speaking of that little African bloodline basenji, Daisy was a completely different dog this weekend. She was letting people walk up and pet her. She was very affectionate. She was exploring the house. Then we crossed back over state lines and she turned back into her old abused and neglected self. Well, she is a little better, but certainly not the dog she was at my parents' or even in the car. But it does give us hope that a normal dog is in there somewhere, er...as normal as a basenji can get. We may have to move out of state or build a house that looks like the inside of a car, but at least we have options.
Back home, I am wore out. Tomorrow we have to get up at around five and head to a urologist appointment. I am excited and apprehensive both about this one. I am anxious to hear what he thinks I can do physically and how my recovery is coming along. However, he still can request the dreaded CAT scan, and I have no idea if he will or not. If I were a betting man, more that just two bucks on lottery tickets once a week, I would bet I will just have a few ultrasounds on the boys, I mean, boy. Ultrasounds require significantly less effort on my part than a CAT scan. You just lay back, flop out your junk, they run some magic wand over the goodies, and tell you to pull your pants back up. That's something I can handle, even in my post chemo, lazy, wimpy state.
So tomorrow I will have the final piece of information in my cancer treatment. I certainly won't be done by any stretch of the imagination. Cancer treatment involves years of watching, testing, and of course waiting long after what most people consider the "treatment" part is done. But at least tomorrow, I will know the plan. This is the last doctor I have to get my medical test road map from and for that I am excited. Hopefully it will be a plan that doesn't involve sliding into a big metal tube and pooping sensations.
Thursday, September 23, 2010
Oncologist II: The Search for Doc
Our appointment with the oncologist Tuesday was a complete opposite of what it had been the week before. The doctor, let's call him by something other than his real name, let's just call him Dr. Jekyll was first distracted by the patient in the other room. Everyone that walked by, Dr. Jekyll was sure to mention he had to spend a lot of time with the next patient. This is while he is walking back and forth looking for my CATscan results. He did know we were coming. It was written down. You would think he would make an effort to get those ahead of time, especially since he needed to spend a lot of time with the patient after me. For what was close to half an hour we would see him walk by, mutter something about still waiting from my results, and loudly shout to whoever hasn't heard yet that he needs to spend a lot of time with the next patient. He then wanders back by and tells us he doesn't want to keep us any longer, then tells us he has to spend a lot of time with his next patient and he doesn't want to make us wait.
It's at this point I am glad I am not the next patient, who we are pretty sure was already in the next room and can hear the shouting. With cancer your mind is constantly bouncing back and forth between the best possible outcome and the worst case scenario. "A lot of time with the next patient" doesn't sound like a confidence vote for "you cured, see ya later!" And the fact that he has been announcing it very loudly for at least a half an hour, makes one wonder if this is the first time he talked to anyone about anything that serious.
He tells us, we will just wait for the results he didn't bother to get, so we can leave and come in some other time. We ask if real quickly we could talk about the three possible options he gave us, since we know he had to get to that patient he has to spend a lot of time with. My wife mentions that she went to the website he gave us, and was only able to pull up a few pages without paying. He looked annoyed and asked if she was able to pull up any at all. She said she was only able to pull up the basics. He looked even more annoyed and said he was surprised by that. A very curious reaction to us going to a website Dr. Jekyll told us to go to. We then tell him about the "episode" the day after the CATscan (well, we give him a very abbreviated version). That is when he decided to argue with us about that. He had never heard of any such reaction to a CATscan.
It's funny that a guy that works with CATscans as part of his job, has a CATscan machine in his building, had never heard of such a thing. The people that gave me the CATscan know about it. Our friends in the medical profession know about it. The pharmacist knew about it. My family doctor knew exactly what I was talking about when I told him. Even my sister, who does CATscans on sheep, mice, and dead giraffes knew about it! Although I don't know if dead giraffes feel ALL of the side effects. How could Dr. Jekyll argue this point?!?! AND WHY DOESN'T HE KNOW ABOUT IT?!?!
Trying to change the subject to something we think he won't be so confrontational on, we switch to treatment. We then say we have decided that chemo is the best option. Now he looks surprised, even though that seemed to be what we all agreed would be the best option last meeting, including Dr. Jekyll! He says, "Fine we'll start...ah...a week from Friday." and starts to walk out of the room. We stop him and ask if there is anything we should do to prepare because we had a few questions about what I can and can't do on chemotherapy. He looks more annoyed that we are actually asking about the thing he told us to do last time that apparently he didn't actually plan on us doing. This appointment is getting stranger and stranger. He says to book the chemo and he'll see us later. We ask about the medicine he said he would give us to take the day before the chemo, and he said to book a second appointment a half an hour before chemo and pushes us on our way. "I'm going to be spending a lot of time with this next patient!!!" we hear as we head down the hallway. Apparently there were a few new people in the waiting room that hadn't heard yet.
We book our appointments in a total daze about what just happened. I was supposed to be on the path to recovery, and now I don't even know which road I am going down. My wife, God bless her, knows just by looking at me that I am very distraught. She's says "Call them back now". I can't, I am way too mad, lost, upset, and confused. We stop for a bite to eat and I end up letting my food get cold while I type away on my phone a letter to the clinic. I feel better. But I still feel like I am not in a good place. "I don't think I want him to be our oncologist." I say. "Whatever you want." she says back, and I can tell she means it. I think she was feeling it too, but wanted me to make the choice.
I get an e-mail back from the clinic by the time we get home. It's from the "Operations Manager". Wow! Didn't plan on it getting that high that quick. She was very apologetic and said she would work with us to get things back on track.
At seven thirty that next morning the phone rings. It's Dr. Jekyll. He apologizes and it all starts out very nice. Like the old Dr. Jekyll. I didn't really appreciate the early phone call, but it's OK. I try to be understanding, after all cancer patients definitely know what it is like to have a "good day" or a "bad day" be it physically, mentally, emotionally, we have them all. As I am starting to give him the benefit of the doubt, I tell him we aren't really comfortable having our meeting to get the medication that I need to take the day before I start chemo, a half an hour before I start chemo (in other words, about twenty-four hours late). He then starts trying to argue with me saying that's not what he said at all and raises his voice. I just stop him right there and say, "I think we are going with a different oncologist."
I would be feeling a lot worse, but I had e-mailed my family doctor about our oncologist not taking into account my GI issues and some of the other problems, and he suggested a friend of his that he knew would take good care of me. I wait for the Operations Manager to call me back, and when I don't hear from her, I call the guy my doctor suggested. October 15th is the first chance I have to get in. I am back to despair. I don't want to wait that long. She suggests another oncologist that will see me the next day. I reluctantly agree. I tell my wife what transpired and she has a list of other suggestions that would have been good to know before I made the call. The rest of the day is filled with internet research on doctors and me feeling like I am just playing Russian Roulette with oncologists now.
You hear stories of people that just walk away from their cancer treatment. They put their fate in the Hands of God rather than in the science that God helped give us. Right now I know exactly how these people feel. I feel like I am drowning in mud with all of the things that are bombarding my brain at this point. Walking away and taking my chances seem like the best option. I mean, I was cancer free yesterday, I should stay that way for a little while without chemo or any other treatment, right? I half made up my mind that's what I would do. My wife calls. I have no idea what she was talking about, I couldn't focus on listening. All I know is at some point she said, "Do you want me to call?" In what felt like a hour long pause, I respond that I am tired of dealing with things, I can't deal with things anymore.
My wife calls on her way home with a lot different tone in her voice. She is excited! She called the Operations Manager, who asked about the "apology". My wife, who could hear the apology on the other side of the room when he started shouting, told the nice lady how the "apology" went. Apparently Dr. Jekyll left out some details of the phone call when he told his boss he called me back. And turns out he left out some details when he told her about the previous day's appointments. Turns out he was leaving out details everywhere. Maybe the guy he had to spend a lot of time with got all these missing details, that must be why he had to spend so much time with him. The operations manager made some phone calls. Had my wife make some phone calls. Some phone calls were made back to my wife. And within an hour, we had a long appointment scheduled with the doctor I want! I am very excited!
See, our family doctor is amazing. He honestly has obsessive compulsive disorder, which means your appointment is always when you booked it an not a second later, and he makes a habit of knowing how each and every patient likes to be talked to. He knows which patients he needs to sugarcoat things with. He knows which patients he needs to talk about all the possibilities with. And he knows which patients (like me) just want it exactly the way it is. He will set me down and say I am 80% sure it is "blah", but there is a 15% chance it could be "blah-blah", and a very slight possibility it could be another thing, but don't even worry about that. If our family doc is recommending this oncologist, he knows he is the right one for me or he would have just said "Sorry, I don't know who I could send you to."
I feel like I am back on the path to recovery. No, I feel like I may be on the highway now! The only thing is I have to wait a week for the appointment. Another, hurry up and wait. Whatever, I have been at this cancer stuff for three weeks now, so I am a veteran now. But I am still not used to the hurry up and wait yet...
It's at this point I am glad I am not the next patient, who we are pretty sure was already in the next room and can hear the shouting. With cancer your mind is constantly bouncing back and forth between the best possible outcome and the worst case scenario. "A lot of time with the next patient" doesn't sound like a confidence vote for "you cured, see ya later!" And the fact that he has been announcing it very loudly for at least a half an hour, makes one wonder if this is the first time he talked to anyone about anything that serious.
He tells us, we will just wait for the results he didn't bother to get, so we can leave and come in some other time. We ask if real quickly we could talk about the three possible options he gave us, since we know he had to get to that patient he has to spend a lot of time with. My wife mentions that she went to the website he gave us, and was only able to pull up a few pages without paying. He looked annoyed and asked if she was able to pull up any at all. She said she was only able to pull up the basics. He looked even more annoyed and said he was surprised by that. A very curious reaction to us going to a website Dr. Jekyll told us to go to. We then tell him about the "episode" the day after the CATscan (well, we give him a very abbreviated version). That is when he decided to argue with us about that. He had never heard of any such reaction to a CATscan.
It's funny that a guy that works with CATscans as part of his job, has a CATscan machine in his building, had never heard of such a thing. The people that gave me the CATscan know about it. Our friends in the medical profession know about it. The pharmacist knew about it. My family doctor knew exactly what I was talking about when I told him. Even my sister, who does CATscans on sheep, mice, and dead giraffes knew about it! Although I don't know if dead giraffes feel ALL of the side effects. How could Dr. Jekyll argue this point?!?! AND WHY DOESN'T HE KNOW ABOUT IT?!?!
Trying to change the subject to something we think he won't be so confrontational on, we switch to treatment. We then say we have decided that chemo is the best option. Now he looks surprised, even though that seemed to be what we all agreed would be the best option last meeting, including Dr. Jekyll! He says, "Fine we'll start...ah...a week from Friday." and starts to walk out of the room. We stop him and ask if there is anything we should do to prepare because we had a few questions about what I can and can't do on chemotherapy. He looks more annoyed that we are actually asking about the thing he told us to do last time that apparently he didn't actually plan on us doing. This appointment is getting stranger and stranger. He says to book the chemo and he'll see us later. We ask about the medicine he said he would give us to take the day before the chemo, and he said to book a second appointment a half an hour before chemo and pushes us on our way. "I'm going to be spending a lot of time with this next patient!!!" we hear as we head down the hallway. Apparently there were a few new people in the waiting room that hadn't heard yet.
We book our appointments in a total daze about what just happened. I was supposed to be on the path to recovery, and now I don't even know which road I am going down. My wife, God bless her, knows just by looking at me that I am very distraught. She's says "Call them back now". I can't, I am way too mad, lost, upset, and confused. We stop for a bite to eat and I end up letting my food get cold while I type away on my phone a letter to the clinic. I feel better. But I still feel like I am not in a good place. "I don't think I want him to be our oncologist." I say. "Whatever you want." she says back, and I can tell she means it. I think she was feeling it too, but wanted me to make the choice.
I get an e-mail back from the clinic by the time we get home. It's from the "Operations Manager". Wow! Didn't plan on it getting that high that quick. She was very apologetic and said she would work with us to get things back on track.
At seven thirty that next morning the phone rings. It's Dr. Jekyll. He apologizes and it all starts out very nice. Like the old Dr. Jekyll. I didn't really appreciate the early phone call, but it's OK. I try to be understanding, after all cancer patients definitely know what it is like to have a "good day" or a "bad day" be it physically, mentally, emotionally, we have them all. As I am starting to give him the benefit of the doubt, I tell him we aren't really comfortable having our meeting to get the medication that I need to take the day before I start chemo, a half an hour before I start chemo (in other words, about twenty-four hours late). He then starts trying to argue with me saying that's not what he said at all and raises his voice. I just stop him right there and say, "I think we are going with a different oncologist."
I would be feeling a lot worse, but I had e-mailed my family doctor about our oncologist not taking into account my GI issues and some of the other problems, and he suggested a friend of his that he knew would take good care of me. I wait for the Operations Manager to call me back, and when I don't hear from her, I call the guy my doctor suggested. October 15th is the first chance I have to get in. I am back to despair. I don't want to wait that long. She suggests another oncologist that will see me the next day. I reluctantly agree. I tell my wife what transpired and she has a list of other suggestions that would have been good to know before I made the call. The rest of the day is filled with internet research on doctors and me feeling like I am just playing Russian Roulette with oncologists now.
You hear stories of people that just walk away from their cancer treatment. They put their fate in the Hands of God rather than in the science that God helped give us. Right now I know exactly how these people feel. I feel like I am drowning in mud with all of the things that are bombarding my brain at this point. Walking away and taking my chances seem like the best option. I mean, I was cancer free yesterday, I should stay that way for a little while without chemo or any other treatment, right? I half made up my mind that's what I would do. My wife calls. I have no idea what she was talking about, I couldn't focus on listening. All I know is at some point she said, "Do you want me to call?" In what felt like a hour long pause, I respond that I am tired of dealing with things, I can't deal with things anymore.
My wife calls on her way home with a lot different tone in her voice. She is excited! She called the Operations Manager, who asked about the "apology". My wife, who could hear the apology on the other side of the room when he started shouting, told the nice lady how the "apology" went. Apparently Dr. Jekyll left out some details of the phone call when he told his boss he called me back. And turns out he left out some details when he told her about the previous day's appointments. Turns out he was leaving out details everywhere. Maybe the guy he had to spend a lot of time with got all these missing details, that must be why he had to spend so much time with him. The operations manager made some phone calls. Had my wife make some phone calls. Some phone calls were made back to my wife. And within an hour, we had a long appointment scheduled with the doctor I want! I am very excited!
See, our family doctor is amazing. He honestly has obsessive compulsive disorder, which means your appointment is always when you booked it an not a second later, and he makes a habit of knowing how each and every patient likes to be talked to. He knows which patients he needs to sugarcoat things with. He knows which patients he needs to talk about all the possibilities with. And he knows which patients (like me) just want it exactly the way it is. He will set me down and say I am 80% sure it is "blah", but there is a 15% chance it could be "blah-blah", and a very slight possibility it could be another thing, but don't even worry about that. If our family doc is recommending this oncologist, he knows he is the right one for me or he would have just said "Sorry, I don't know who I could send you to."
I feel like I am back on the path to recovery. No, I feel like I may be on the highway now! The only thing is I have to wait a week for the appointment. Another, hurry up and wait. Whatever, I have been at this cancer stuff for three weeks now, so I am a veteran now. But I am still not used to the hurry up and wait yet...
The ugly truth about CATscans
The rest of my Friday involved greeting my parents and drinking every non-alcoholic, non-caffeinated beverage that wasn't nailed down. After all, the nice nurse did tell me I could get dehydrated from the CATscan dye. With my parents in town to check on my recovery, I decide to "go crazy" and have a twelve ounce Pepsi with dinner, the only caffeine all day. After all that's just a little caffeine and the CATscan was 10 hours earlier. We make plans for Tom's Big Day Out the next day, since I have basically just been a crotch icing hermit for the past week.
I get up in the morning excited to start the day. I take my medication and get ready for the fun filled day ahead of us. We have so many plans! Shopping for tools. Fixing the boat. And other great feats that would have me more than 100 feet from the house (and that number is relevant later). Then I have a feeling...downstairs...in the back. It kinda feels like I have to go. But I kinda don't have to go. Then the feeling kinda feels stronger. I go into the bathroom, sit down and...well, how to explain it. Remember the old movies where the army grabs the battering ram and hits the two huge doors to the castle and they don't budge? Something like that.
You know, it is at this point I remember reading somewhere on that checklist before the CATscan "Have you ever had any adverse reaction to the dye?" We checked "No" because somehow, I have never had this particular medical procedure before. Because of my gastro-intestinal issues, most of my medical tests involves me being violated in some way. I have things done to my body that would be considered obscene outside of the operating room, I even think that some are illegal in Alabama, (and a bar show in Tijuana). But I have never had a CATscan. I remember hearing the guy just down from us filling out his form while I was trying to choke down the orange flavored cement "What the heck is the dye? Squid ink?" I didn't pay any attention, because if I have been poked, stuck, sampled, scanned, scraped, sliced and diced, I can walk through this test and it's wimpy dye!
Then it hits me again. I feel like I am going to pass out. Now I have the same army, with a slightly bigger battering ram, except this time they are trying to break through the mail slot, and still aren't getting anywhere. The pain is immense. Because I have had so many tests, I am familiar with a little painkiller back up, but nothing like this. It feels like I have the back up of constipation with the urgency of diarrhea. In between contractions, I grab a liter bottle of water. I must have gotten too dehydrated yesterday. I down the water and fill it up again. And again. Embarrassed beyond belief, I beg my wife to run to the pharmacy and get me some relief, ANY RELIEF! Still sore from the surgery, I can't stand up completely straight, and now with this going on, it hurts to sit in a chair...or lie on a bed...or breath...or blink. I park myself in the bathroom waiting for something, anything to happen. I start sweating, but feel chilled at the same time. I take off my clothes and think about jumping in the shower between squeezing and slamming. Maybe the hot water will help, I don't know. It can't hurt. My wife arrives and walks in to something a spouse should never have to walk in on. I am on the toilet, weak from all of this, and naked from almost, not quite, thinking about getting in the shower. The ordeal to this point has produce just a few brown dots in the toilet (another thing a spouse should never have to see). She says "You were successful? You don't need this?" I snatch whatever it is in her hand and start to rip it open. She told me that the pharmacist said this happens sometimes in reaction to CATscans and gave me some other instructions. He also told her that if this didn't work, I would have to use an enema. At this point, I am upset that she didn't grab an enema too.
Satisfied that relief is just around the bend, I grab the pills and take a swig of water. The funny thing about drinking three quarts of water in a short amount of time, you run out of space. None of it makes it past my mouth. I set the pills down, and then things get worse.!
People with severe gastro-esophageal reflux disease (and in my case paired with an esophageal ulcer and a hiatal hernia) can have a surgery called a laparoscopic Nissen fundiplication (and those three words just made my spellcheck start smoking). It is a great surgery and only really has one side effect. You can longer regurgitate. Your mind and stomach don't know this, but your throat is one way only now. So, the signals keep getting sent, and the muscles react, but everything stays where it started. This is really not that big of a problem...unless you just drank three quarts of water and then tried to take one more drink with two pills.
The heaves start. For some reason, even though I had this stomach surgery twelve years ago, I still lean over the toilet out of habit. Something else a spouse should never witness, although there is a small part of me that is glad she finally witnessed this anomaly. When people ask about the surgery, and you tell them about the side-effect, you usually get a skeptical glance back. Now I have a witness! This goes on for what seems like hours, but was probably about twenty seconds. I finally stop, get to my feet, when my wife asks, "What's that?" Newton's third law of motion states that for every action there is an equal and opposite reaction. In the midst of everything else going on, the pushing and lack of motion in the front, led to a pushing and lack of motion in the back...except for a few brown spots on the carpet. I am positive now my wife can walk in front of any judge in the world, relay what she has witnessed in the past five minutes, and be granted an immediate annulment.
I manage to choke down the pills. I jump in the shower as I wait for them to work. I get out and read the package. "Expect results in 6-12 hours." I wish she would have gotten the enema too. I manage to awkwardly get onto the bed. It has only been fifteen minutes, I might as well get comfortable...uh-oh, better take a walk, a really quick walk. I sit down, and minimal success. The army is still there. I try to lay down again, no I don't. Army isn't budging. I decided it is best to remain upright so I can move quicker and walk outside to talk to my parents...I mean back inside...standing army...back outside....inside. I bet that my parents are really glad they came to see this! Within an hour, the medicine worked. I feel like the Octomom after baby six or seven, but I can sit comfortably now.
I am ready to go on with my plans with my parents. We need to go to the store, then fix the boat... Then I remember what the pill bottle said, "Expect results in 6-12 hours." Did it work so fast because I hadn't eaten anything in twelve hours? Did it works so fast because I drank half of Lake Erie this morning? Or am I 5-11 hours from expecting results. Over the next twenty minutes or so, I do get some more results, and then nothing. But I am scared. I am very scared. If this stuff worked that good within an hour, what are results going to be like in the optimal time. We decide to call off shopping or anything that involves me in a vehicle with upholstery until the twelve hours is up. We will work on the boat later. Later comes. The boat is in the backyard in my workshop. Without a bathroom. We can fix the boat later.
Six hours came and went, as well as twelve without incident. As I recover from the day's event, I read up on the literature the oncologist gave me. The active surveillance option for my treatment calls for about twenty- five CATscans over the next ten years, including every four months for the first few years. I think we can throw the active surveillance option RIGHT out the window. I continue to recover from my surgery and "labor" until the oncologist visit Tuesday. I tell the oncologist about the horrific reaction to the dye, and how I would like to limit the times I have to go through that test. The formerly nice oncologist tells me I didn't have that reaction. My wife chimes in to say that I most certainly did have that reaction (she probably has it permanently etched in her memory). The distantly nice oncologist again states that I didn't have that reaction. It must be the painkillers...that I have been off of for a week...and have already experienced and gone through that with a lot less trouble...which I would have told him had he given me the chance.
Tomorrow, I will talk about my search for a new oncologist!
I get up in the morning excited to start the day. I take my medication and get ready for the fun filled day ahead of us. We have so many plans! Shopping for tools. Fixing the boat. And other great feats that would have me more than 100 feet from the house (and that number is relevant later). Then I have a feeling...downstairs...in the back. It kinda feels like I have to go. But I kinda don't have to go. Then the feeling kinda feels stronger. I go into the bathroom, sit down and...well, how to explain it. Remember the old movies where the army grabs the battering ram and hits the two huge doors to the castle and they don't budge? Something like that.
You know, it is at this point I remember reading somewhere on that checklist before the CATscan "Have you ever had any adverse reaction to the dye?" We checked "No" because somehow, I have never had this particular medical procedure before. Because of my gastro-intestinal issues, most of my medical tests involves me being violated in some way. I have things done to my body that would be considered obscene outside of the operating room, I even think that some are illegal in Alabama, (and a bar show in Tijuana). But I have never had a CATscan. I remember hearing the guy just down from us filling out his form while I was trying to choke down the orange flavored cement "What the heck is the dye? Squid ink?" I didn't pay any attention, because if I have been poked, stuck, sampled, scanned, scraped, sliced and diced, I can walk through this test and it's wimpy dye!
Then it hits me again. I feel like I am going to pass out. Now I have the same army, with a slightly bigger battering ram, except this time they are trying to break through the mail slot, and still aren't getting anywhere. The pain is immense. Because I have had so many tests, I am familiar with a little painkiller back up, but nothing like this. It feels like I have the back up of constipation with the urgency of diarrhea. In between contractions, I grab a liter bottle of water. I must have gotten too dehydrated yesterday. I down the water and fill it up again. And again. Embarrassed beyond belief, I beg my wife to run to the pharmacy and get me some relief, ANY RELIEF! Still sore from the surgery, I can't stand up completely straight, and now with this going on, it hurts to sit in a chair...or lie on a bed...or breath...or blink. I park myself in the bathroom waiting for something, anything to happen. I start sweating, but feel chilled at the same time. I take off my clothes and think about jumping in the shower between squeezing and slamming. Maybe the hot water will help, I don't know. It can't hurt. My wife arrives and walks in to something a spouse should never have to walk in on. I am on the toilet, weak from all of this, and naked from almost, not quite, thinking about getting in the shower. The ordeal to this point has produce just a few brown dots in the toilet (another thing a spouse should never have to see). She says "You were successful? You don't need this?" I snatch whatever it is in her hand and start to rip it open. She told me that the pharmacist said this happens sometimes in reaction to CATscans and gave me some other instructions. He also told her that if this didn't work, I would have to use an enema. At this point, I am upset that she didn't grab an enema too.
Satisfied that relief is just around the bend, I grab the pills and take a swig of water. The funny thing about drinking three quarts of water in a short amount of time, you run out of space. None of it makes it past my mouth. I set the pills down, and then things get worse.!
People with severe gastro-esophageal reflux disease (and in my case paired with an esophageal ulcer and a hiatal hernia) can have a surgery called a laparoscopic Nissen fundiplication (and those three words just made my spellcheck start smoking). It is a great surgery and only really has one side effect. You can longer regurgitate. Your mind and stomach don't know this, but your throat is one way only now. So, the signals keep getting sent, and the muscles react, but everything stays where it started. This is really not that big of a problem...unless you just drank three quarts of water and then tried to take one more drink with two pills.
The heaves start. For some reason, even though I had this stomach surgery twelve years ago, I still lean over the toilet out of habit. Something else a spouse should never witness, although there is a small part of me that is glad she finally witnessed this anomaly. When people ask about the surgery, and you tell them about the side-effect, you usually get a skeptical glance back. Now I have a witness! This goes on for what seems like hours, but was probably about twenty seconds. I finally stop, get to my feet, when my wife asks, "What's that?" Newton's third law of motion states that for every action there is an equal and opposite reaction. In the midst of everything else going on, the pushing and lack of motion in the front, led to a pushing and lack of motion in the back...except for a few brown spots on the carpet. I am positive now my wife can walk in front of any judge in the world, relay what she has witnessed in the past five minutes, and be granted an immediate annulment.
I manage to choke down the pills. I jump in the shower as I wait for them to work. I get out and read the package. "Expect results in 6-12 hours." I wish she would have gotten the enema too. I manage to awkwardly get onto the bed. It has only been fifteen minutes, I might as well get comfortable...uh-oh, better take a walk, a really quick walk. I sit down, and minimal success. The army is still there. I try to lay down again, no I don't. Army isn't budging. I decided it is best to remain upright so I can move quicker and walk outside to talk to my parents...I mean back inside...standing army...back outside....inside. I bet that my parents are really glad they came to see this! Within an hour, the medicine worked. I feel like the Octomom after baby six or seven, but I can sit comfortably now.
I am ready to go on with my plans with my parents. We need to go to the store, then fix the boat... Then I remember what the pill bottle said, "Expect results in 6-12 hours." Did it work so fast because I hadn't eaten anything in twelve hours? Did it works so fast because I drank half of Lake Erie this morning? Or am I 5-11 hours from expecting results. Over the next twenty minutes or so, I do get some more results, and then nothing. But I am scared. I am very scared. If this stuff worked that good within an hour, what are results going to be like in the optimal time. We decide to call off shopping or anything that involves me in a vehicle with upholstery until the twelve hours is up. We will work on the boat later. Later comes. The boat is in the backyard in my workshop. Without a bathroom. We can fix the boat later.
Six hours came and went, as well as twelve without incident. As I recover from the day's event, I read up on the literature the oncologist gave me. The active surveillance option for my treatment calls for about twenty- five CATscans over the next ten years, including every four months for the first few years. I think we can throw the active surveillance option RIGHT out the window. I continue to recover from my surgery and "labor" until the oncologist visit Tuesday. I tell the oncologist about the horrific reaction to the dye, and how I would like to limit the times I have to go through that test. The formerly nice oncologist tells me I didn't have that reaction. My wife chimes in to say that I most certainly did have that reaction (she probably has it permanently etched in her memory). The distantly nice oncologist again states that I didn't have that reaction. It must be the painkillers...that I have been off of for a week...and have already experienced and gone through that with a lot less trouble...which I would have told him had he given me the chance.
Tomorrow, I will talk about my search for a new oncologist!
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