Went in for my PET scan today. Similar to the CT scan except they gave me a radioactive tracing agent. I was advised that this radioactive tracer was a) not harmful to me but b) I should avoid contact with pregnant women and small children for 8 hours following the scan. Those two statements seem somewhat contradictory but who am I to question the experts. Anyway, avoiding pregnant women and small children isnt really a limitation up here.
I was told I could still play hockey that evening but found that my radioactive status did not increase my skill level or dissuade my oponents at all. Very disappointed.
On a lighter note, my parent's and sister will be coming out the day after Christmas to spend some time with us so we're both looking forward to that.
Friday, December 21, 2012
Friday, December 14, 2012
Stitches Come Out
The original "biopsy discussion" appointment turned into a quick stop to remove the stitches. Everything had healed up fine and hockey was back on the agenda.
Funny that since a minor surgery at 7, these were the Monkee's first stitches. Granted there was a time or tow when maybe there should have been stitches (...ahem) but still... all that hockey, mountain biking, skiing, pack-rafting, climbing, hiking, and this is the first time? Hard to believe.
Funny that since a minor surgery at 7, these were the Monkee's first stitches. Granted there was a time or tow when maybe there should have been stitches (...ahem) but still... all that hockey, mountain biking, skiing, pack-rafting, climbing, hiking, and this is the first time? Hard to believe.
Wednesday, December 12, 2012
First Meeting with Oncologist
Given that this is a new experience for me, I didn't really have a preference as far as oncologists go so I simply accepted the recommendation of the ENT doctor. I figured it'd at least be a starting point and if the guy turned out to be a tool, I'd do a bit more research and try to actually select someone.
Julie went with me to the first meeting and as it turns out, he was pretty cool. It seems like a lot of doctors don't really listen to you as a patient and just talk at you and I expected that even more from an oncologist but he was very accomodating and easy to talk to. He respected the research I'd already done and confirmed most of what I'd already read in that the treament plan for Hodgkin's is pretty standard and that it is highly curable. He also mentioned that there is no known definite cause for this one. It's not hereditary and usually just chalked up to bad luck. I'm not convinced my swims in the Housatonic River/Letterkenny "rad-ass" days early on in my Weston career didn't play a contributing factor.
Contrary to what the ENT had told me, we cannot tell what stage it was in simply from the biopsy results. We still need to perform a PET scan to get that information and also a bone marrow biopsy just to make sure it had not spread there. The PET scan doesn't sound too bad but the bone marrow biopsy will involve shoving a large gauge needle through my hip bone to extract some marrow.
With all the holidays coming up, people tend to leave Alaska to visit family, Mexico, or Hawaii so most of it is going to have to wait until after the new year. Treatment cannot be started until the scan and biopsy are performed so that we have a baseline. I will also need to have a chemo port surgically implanted in my chest. That one I did not come across in my research. Since it will be 4-6 months of chemo and chemo tends to be rough on the veins in the arms, they prefer to implant a port that has a line running into the jugular for more efficient delivery ofpoison chemo into my system. Sounds...interesting? I figured that'd be the end of my hockey playing for a few months but he indicated that it shouldn't be an issue. Once it's in there and the incision has healed, I should be able to do everything I normally do. I tend to be tough on gear so I figure I'll break it at least once.
The other good news was that I would be able to work during the treatment process. Apparently the chemo used to treat Hodgkins is of the "less toxic" variety and shouldn't affect my day-to-day activities too much. There may be some days where I'm more worn down the others but nothing major and no hair or significant weight loss. This is good news because I'll be starting a new job with Conoco Phillips (Big Oil!) come the start of the new year but I must admit I was a bit disappointed about the whole weight loss thing. If nothing else was to be gained from this experience, I was at least hoping I'd have license to unlimited cheesesteaks to combat the expected weight loss. No such luck!
Julie went with me to the first meeting and as it turns out, he was pretty cool. It seems like a lot of doctors don't really listen to you as a patient and just talk at you and I expected that even more from an oncologist but he was very accomodating and easy to talk to. He respected the research I'd already done and confirmed most of what I'd already read in that the treament plan for Hodgkin's is pretty standard and that it is highly curable. He also mentioned that there is no known definite cause for this one. It's not hereditary and usually just chalked up to bad luck. I'm not convinced my swims in the Housatonic River/Letterkenny "rad-ass" days early on in my Weston career didn't play a contributing factor.
Contrary to what the ENT had told me, we cannot tell what stage it was in simply from the biopsy results. We still need to perform a PET scan to get that information and also a bone marrow biopsy just to make sure it had not spread there. The PET scan doesn't sound too bad but the bone marrow biopsy will involve shoving a large gauge needle through my hip bone to extract some marrow.
With all the holidays coming up, people tend to leave Alaska to visit family, Mexico, or Hawaii so most of it is going to have to wait until after the new year. Treatment cannot be started until the scan and biopsy are performed so that we have a baseline. I will also need to have a chemo port surgically implanted in my chest. That one I did not come across in my research. Since it will be 4-6 months of chemo and chemo tends to be rough on the veins in the arms, they prefer to implant a port that has a line running into the jugular for more efficient delivery of
The other good news was that I would be able to work during the treatment process. Apparently the chemo used to treat Hodgkins is of the "less toxic" variety and shouldn't affect my day-to-day activities too much. There may be some days where I'm more worn down the others but nothing major and no hair or significant weight loss. This is good news because I'll be starting a new job with Conoco Phillips (Big Oil!) come the start of the new year but I must admit I was a bit disappointed about the whole weight loss thing. If nothing else was to be gained from this experience, I was at least hoping I'd have license to unlimited cheesesteaks to combat the expected weight loss. No such luck!
Tuesday, December 11, 2012
Biopsy Results - Hodgkin's It Is
The biopsy had been performed on a Thursday and I had an appointment scheduled for the following Fri to discuss the results. However, Tuesday morning I got a call around 9:30 and it was the doctor calling to inform me that the pathology results were back and that I did indeed have Hodgkin's. So there I was sitting in a cube at a client's site, totally not ready for that news. In the doctor's defense, I did tell him to let me know as soon as he found anything out but I really wasn't ready for it.
He asked if I had any questions but all I could respond was "Uh...what?" Eventually I got a few questions out, enough to determine that it was the most common type of Hodgkin's which was "good' and to have him set up an appointment for me with an oncologist the next day.
I was pretty much done for the day at that point but having no more vacation days left and facing the prospect of unpaid leave, I had to just suck it up. I let Julie know and I think she went home for the rest of the day.
He asked if I had any questions but all I could respond was "Uh...what?" Eventually I got a few questions out, enough to determine that it was the most common type of Hodgkin's which was "good' and to have him set up an appointment for me with an oncologist the next day.
I was pretty much done for the day at that point but having no more vacation days left and facing the prospect of unpaid leave, I had to just suck it up. I let Julie know and I think she went home for the rest of the day.
Thursday, December 6, 2012
Biopsy Cheesteak
For the biopsy, the plan was to open up the left side of my neck and remove the largest lymph node. Once removed, they'd be able to analyze the cells in the lymph node and determine if it really was cancer and if so, what "brand".
It was sold as a relatively simple, painless procedure with the biggest side affect being that I would be unable to play hockey for about a week and a half. Oh yeah, the biopsy was scheduled to be performed at 2 and I had to fast for 12 hours before that because I was going to get general anesthesia...Hungry Monkee!
I hate being in hospitals, hate being a patient so I had a generally unpleasant attitude in pre-op. Not that I was too worried about the surgery, I just did NOT want to be there and the reason I was there was finally, slowly starting to sink in.
The surgery went fine and I was a bit loopy when I came out of it. I really wanted a cheesesteak and the nurse attending to me claimed to have never heard of such a thing. I thought she was crazy and apparently, as Julie was escorting me out of the building, I was trying to explain to her what it was and where she could actually get a decent one in town. I'm sure she thought I was just drugged up but I was serious! Oh well, her loss. I could have understood if she was from Alaska and had never even heard of a cheesesteak but she said she was from Cleveland. Seriously?!? From Cleveland and never heard of a cheesesteak.
Still didn't get that cheesesteak....
It was sold as a relatively simple, painless procedure with the biggest side affect being that I would be unable to play hockey for about a week and a half. Oh yeah, the biopsy was scheduled to be performed at 2 and I had to fast for 12 hours before that because I was going to get general anesthesia...Hungry Monkee!
I hate being in hospitals, hate being a patient so I had a generally unpleasant attitude in pre-op. Not that I was too worried about the surgery, I just did NOT want to be there and the reason I was there was finally, slowly starting to sink in.
The surgery went fine and I was a bit loopy when I came out of it. I really wanted a cheesesteak and the nurse attending to me claimed to have never heard of such a thing. I thought she was crazy and apparently, as Julie was escorting me out of the building, I was trying to explain to her what it was and where she could actually get a decent one in town. I'm sure she thought I was just drugged up but I was serious! Oh well, her loss. I could have understood if she was from Alaska and had never even heard of a cheesesteak but she said she was from Cleveland. Seriously?!? From Cleveland and never heard of a cheesesteak.
Still didn't get that cheesesteak....
Monday, December 3, 2012
CT Scan and Results
I have my CT scans on Friday with plans to follow up with the ENT on the results on Monday. The scans are no big deal at about 45 seconds per scan....to the tune of $1600/scan. Wow! Never have I blown through a deductible so quickly before.
In the time between the first meeting with the ENT and the follow-up to discuss the results, I decide this lymphoma business is a bunch of crap. I don't know what's going on but on the Weds of that week, I had a hockey game where we had no subs so I played an entire 45-minute game, no problem aside form being tired which is expected. I don't have cancer, the notion is simply absurd.
Monday I go into see the ENT to discuss the CT results (I get the doctor this time) and he walks in saying "I hate to say it but the results don't look good". {POP} I tell him to leave the room and try that again because that was obviously incorrect. He tells me that the pattern of adenopathy (enlarged lymph nodes) suggests Hodgkin's and we'll need to pull a lymph node to do a biopsy. That old story again? I guess I can't just will this away.
We schedule a biopsy for later in the week. This is bullshit.
In the time between the first meeting with the ENT and the follow-up to discuss the results, I decide this lymphoma business is a bunch of crap. I don't know what's going on but on the Weds of that week, I had a hockey game where we had no subs so I played an entire 45-minute game, no problem aside form being tired which is expected. I don't have cancer, the notion is simply absurd.
Monday I go into see the ENT to discuss the CT results (I get the doctor this time) and he walks in saying "I hate to say it but the results don't look good". {POP} I tell him to leave the room and try that again because that was obviously incorrect. He tells me that the pattern of adenopathy (enlarged lymph nodes) suggests Hodgkin's and we'll need to pull a lymph node to do a biopsy. That old story again? I guess I can't just will this away.
We schedule a biopsy for later in the week. This is bullshit.
Wednesday, November 28, 2012
Not That Easy
So later that week, I go into the ENT, expecting to get a lymph node biopsy. Not so fast. I don't know what differentiates all the different acronym medical types I've been seeing, but this time I get an NP, Nurse Practitioner. She asks me why I'm there which is kind of surprising because I'm expecting her to just stick a needle in my neck and submit samples for testing. So we go through the whole case history again, she plays around with lymph nodes in my neck, finding another much smaller one on the right side, and then tells me that they won't do lymph node biopsy using just a needle, no one in town will. She said that 9 out of 10 times the results come back saying insufficient material to do the analysis and you just wind up wasting time and money. In order to get a definite answer, you need to pull a lymph node for biopsy which is a surgical procedure (ie expensive) and shouldn't be done unless necessary.
She says I need to get a CT scan of my neck and chest. That will show more detail of what is going on with the lymph nodes in those areas and if that dictates that a biopsy should be performed. Great, more waiting. It'll be a few more days until I can get in for the CT scans.
She says I need to get a CT scan of my neck and chest. That will show more detail of what is going on with the lymph nodes in those areas and if that dictates that a biopsy should be performed. Great, more waiting. It'll be a few more days until I can get in for the CT scans.
Monday, November 26, 2012
The Follow-Up
Monday after Thanksgiving was the follow up with the doctor I had yet to actually meet to discuss the results of my bloodwork and lack of response to the anti-biotics. I approached this appointment with much intrepidation.
Turns out we didn't discuss the blood work other than to say that "it didn't show us anything" but we did have an extensive discussion about other potential diagnoses. Some sort of viral infection including cat scratch fever (yes, it's a real thing) was still on the table but this was the first time that the C-word was explicitly dropped. Obviously I had already stressed on that one quite a bit so it wasn't a surprise. What was a surprise were the cancers she chose to list as possible candidates: stomach and pancreatic. Again, no medical or cancer expert here but I knew those where not good things to have. She mention did that these were a very remote possibility and for some reason, I had to ask if lymphoma was still on the table. She said it was and I was wondering why she hadn't started with that one instead of the big, bad scary guys.
We then discussed the best and quickest way of getting a determinate answer on the cancer questions. This was getting more stressful due the fact that on top of this potential cancer issue, I was sitting on a nice new job offer from Conoco Phillips how to factor this medical issue into that decision process. She said a lymph node biopsy would get us a definite answer on the cancer issue and setup an appointment with an ENT doctor to have this done. She said it was non-surgical, they could just stick a needle in it, pull out some cells, and do the analysis.
I went home after the appointment and again went into Google research mode to find out about pancreatic and stomach cancer and was relieved to see that there are very definitive symptoms associated with both of them and I was exhibiting none of them (lack of appetite, aversion to eating meat...NOPE). I don't know what the hell she was talking about but thanks for the 5-minute thrill.
Turns out we didn't discuss the blood work other than to say that "it didn't show us anything" but we did have an extensive discussion about other potential diagnoses. Some sort of viral infection including cat scratch fever (yes, it's a real thing) was still on the table but this was the first time that the C-word was explicitly dropped. Obviously I had already stressed on that one quite a bit so it wasn't a surprise. What was a surprise were the cancers she chose to list as possible candidates: stomach and pancreatic. Again, no medical or cancer expert here but I knew those where not good things to have. She mention did that these were a very remote possibility and for some reason, I had to ask if lymphoma was still on the table. She said it was and I was wondering why she hadn't started with that one instead of the big, bad scary guys.
We then discussed the best and quickest way of getting a determinate answer on the cancer questions. This was getting more stressful due the fact that on top of this potential cancer issue, I was sitting on a nice new job offer from Conoco Phillips how to factor this medical issue into that decision process. She said a lymph node biopsy would get us a definite answer on the cancer issue and setup an appointment with an ENT doctor to have this done. She said it was non-surgical, they could just stick a needle in it, pull out some cells, and do the analysis.
I went home after the appointment and again went into Google research mode to find out about pancreatic and stomach cancer and was relieved to see that there are very definitive symptoms associated with both of them and I was exhibiting none of them (lack of appetite, aversion to eating meat...NOPE). I don't know what the hell she was talking about but thanks for the 5-minute thrill.
Friday, November 16, 2012
What the Hell is a "Mediastinum"?
Two days after the lymph nodes on the left side of my next popped out, I was back at the Dr's office, this time seeing another PA. She was young and seemed fairly new but also very competent. As I described my symptoms again, she asked me a bunch of new questions and didn't seemed particularly thrilled with the answers. She didn't say as much but here body language was a giveaway. She ordered up a more thorough round of blood tests, a urine analysus, and a chest x-ray. All of this was done in house so we could get immediate analysis of the x-ray.
To my surprise, there were some concerns with the x-ray. She said my mediastinum was showing signs of enlargement. My what? At this point, I've heard a lot of medical terms but that one was completely new to me. She explained that it is the "mass of flesh" in the chest that includes the heart, blood vessels, esophageus, and lymph nodes. It could be enlarged due to infection but since I was showing no other symptoms of upper respiratory issues (coughing, congestion, etc) it could also be something more deviant. She consulted with another doctor and the recommended getting a CT scan of my chest. Since that is an extremely expensive test ($1700) and it would have been entirely out-of-pocket, we agreed to run a course of 5-day antibiotics to see if that cleared things up and to follow up with the doctor after that.
Then I went home and Googled "mediastinum" and began to freak out a little bit. nearly every link involving mediastinum and enlargement referred Hodkin's lymphoma. This was the Friday before Thanksgiving and I was unable to set a follow up appointment with the other doctor until the Monday after Thanksgiving. This prove to be a LONG week of sleepless nights and Google research. When I complete the antibiotics the day before Thanksgiving and my symptoms had not changed, I really began to worry. Worst Thanksgiving weekend ever.
To my surprise, there were some concerns with the x-ray. She said my mediastinum was showing signs of enlargement. My what? At this point, I've heard a lot of medical terms but that one was completely new to me. She explained that it is the "mass of flesh" in the chest that includes the heart, blood vessels, esophageus, and lymph nodes. It could be enlarged due to infection but since I was showing no other symptoms of upper respiratory issues (coughing, congestion, etc) it could also be something more deviant. She consulted with another doctor and the recommended getting a CT scan of my chest. Since that is an extremely expensive test ($1700) and it would have been entirely out-of-pocket, we agreed to run a course of 5-day antibiotics to see if that cleared things up and to follow up with the doctor after that.
Then I went home and Googled "mediastinum" and began to freak out a little bit. nearly every link involving mediastinum and enlargement referred Hodkin's lymphoma. This was the Friday before Thanksgiving and I was unable to set a follow up appointment with the other doctor until the Monday after Thanksgiving. This prove to be a LONG week of sleepless nights and Google research. When I complete the antibiotics the day before Thanksgiving and my symptoms had not changed, I really began to worry. Worst Thanksgiving weekend ever.
Tuesday, November 13, 2012
First Signs of Trouble
This all started with some wierd chest discomfort I was experiencing back in early November. It wasn't really pain but more like the pressure you feel in your lungs like when you've been in the pool too long. It wasn't really affecting me, just something that was obviously off and after 2 weeks of no improvement, I decided to go to the Dr. There'd been a lot of sickness in AK in the fall with many people suffering from upper respiratory infections and one friend even had walking pneumonia so I figured it was something a quick phase of antibiotics would take care of.
I went in to see the PA I usually see on 11/13 and despite some possible signs that it might be an upper respiratory infection, he thought it was acid reflux and gave me some sample to try, instructing me to call back if things got worse.
Two days after that visit, I was sitting at work scratching some irritation on the left side of my neck and noticed that whatever it was, it was quite swollen. I went into the bathroom to take a look and what I was guessing were lymph nodes were visibly enlarged. Not painful, but definitely popping out.
As I was aware that swollen lymph nodes are a sign of infection, I was not too worried but it was also obvious that this was not acid reflux so I called in and scheduled another visit for the following day. Gotta get me some antiobiotics! ...or so I thought.
I went in to see the PA I usually see on 11/13 and despite some possible signs that it might be an upper respiratory infection, he thought it was acid reflux and gave me some sample to try, instructing me to call back if things got worse.
Two days after that visit, I was sitting at work scratching some irritation on the left side of my neck and noticed that whatever it was, it was quite swollen. I went into the bathroom to take a look and what I was guessing were lymph nodes were visibly enlarged. Not painful, but definitely popping out.
As I was aware that swollen lymph nodes are a sign of infection, I was not too worried but it was also obvious that this was not acid reflux so I called in and scheduled another visit for the following day. Gotta get me some antiobiotics! ...or so I thought.
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