Thursday, June 30, 2005

Frustration

I am home now, surprisingly. The doctors actually released me yesterday afternoon so I've been home now for almost 24 hours. Everything else has pretty much gone exactly opposite of what I have hoped. To put it mildly, I've been extremely frustrated with the way everything has been handled.

Thankfully, only one incision was made, although it is much larger than what I had anticipated--stretching from behind my left ear all the way down to the center of the front of my neck--probably a good six inches. This is better than if they had been forced to make another incision downward, making a sort of "Y" shape on my neck. They would have only had to do that if my lymph nodes were especially hard to get to, so at least I'm easily accessible.

I was not aware of this until two of them were installed, but apparently there is a new, preferred practice to the use of gauze and bandages for the purpose of keeping the wound clean and drained. It is called the Jackson-Pratt (JP) Drain and it is quite possibly one of the most annoying things ever. At least it isn't painful, but I feel like I'm in the Matrix or something because I've got two solid tubes stuck inside me that are supposed to drain away the fluids from inside my body. This drainage is driven by two bulbous, rubber reservoirs that just kind of dangle from my body. I know that sounds gross--and it is--but that is how it works. So I've got one going in on my upper neck and one going in down where the neck and chest meet.

Yesterday (Wednesday), the doctors said that I would be coming back in today (Thursday) to have one of the drains removed. Now, today, they are acting like they don't know what I'm talking about and it is really, really frustrating. I would be feeling much more forgiving about the whole matter if they hadn't messed up my prescriptions, too. Don't get me wrong, I think that they did a great job on the actual surgery, but the post-op care has left quite a bit to be desired. I didn't even get to see my doctor before being discharged. Now I'm no expert, but I'm pretty sure that standard practice would require the doctor to see the patient before he or she leaves the hospital.

So now I am just waiting...waiting...waiting for the hospital to call me back about getting one of these drains removed. Oh yeah, the other one...it's not scheduled to come out until Wednesday, July 6.

Sunday, June 26, 2005

Waiting

Well, not much new has happened over the past week. I completed all my pre-op stuff the week before and so this week has just been getting my things in order. I joke about feeling like I'm getting ready for vacation but in a way it is an apt description. Most people wouldn't know what it feels like to get things ready for being out-of-commission for a couple weeks, but everyone knows what it is like in the days leading up to a vacation. So at work I try to close up as many projects as possible and then find people who can carry the load while I'm out. It also means that since I'm going to be confined to my apartment for a while, I need to make sure that it is clean. Very boring, but I'm pretty sure that I'll appreciate it when the time comes. Of course, this has nothing to do with my mom coming out here to help me during my recovery.

So my surgery is scheduled for Tuesday afternoon at 4:30. I'm no expert, but isn't that kind of late in the day to start a 3-hour procedure? I mean, I don't even like to go to the barber when it's close to quitting time because I know he's gotta be thinking about what he is going to do when he gets home! But anyway, I can't really worry about that stuff, the guy performing the surgery is the chair of the Head and Neck department at the hospital, so he must know his stuff! I'll just worry about what I can control and trust the doctors to do what they've been trained to do. So with the surgery at 4:30, I'll need to show up by 2:30 to be admitted, fill out more forms (my favorite), get dressed in one of those trendy hospital gowns or whatever it is, get pricked with a few more needles, and then go under. I wish I could could just go under first.

It is no surprise that again my friends/family are coming through for me. As I already mentioned, my mom is coming out here and will get here Tuesday morning. Friends college as well as from previous jobs (including the House, Senate, and campaign) and friends from my current job have really been coming through for me in a way that I can never repay. One thing is for certain: experiences like this one really demand a review of priorities and drives home the things in life that are really important.

I'll try to post at least once more before the big day. Then after that you won't hear from me for a while, at least until I'm back home and hopefully "resting comfortably" as they say. If you don't hear from me before the surgery, I just want to say thanks to all of you out there who have been reading my blog, praying for me, sending me cards, or just sending good vibes my way. It all is much appreciated and I look forward to passing it on when the time comes.

Sunday, June 19, 2005

Thank God It's Monday!!!

Well this was certainly not a weekend that I would like to repeat. Just too much happening.

The weekend started out okay because I thought I would get an early start to it. The only problem was that I had to suffer through an MRI and my pre-op blood work to get there. Everything is fine when I leave the office and make my way over to the hospital. I find my way around the labyrinth that is Georgetown University Hospital and get to the MRI department. At that point I am handed a clipboard with some forms to fill out. Now, I'm no genius, but doesn't it seem a little bit weird that you have to fill out a variation of the SAME EXACT FORM every time you go to another part of the same hospital??? Wouldn't you think that they would have all that information on one central server somewhere? Or at least be able to share the information between each other so that we, the patients, don't have to suffer through the stupid things every time we show up? On the other hand, maybe they just know that they will be hopelessly behind schedule and this is just a ploy to keep you occupied for 15-20 minutes. I don't know...but if that is the reason, it's a lame one because I bring my own Sports Illustrated to while away the time.

Anyway, on this particular Friday, they were hopelessly behind schedule. My appointment was supposed to be at 12:15. By 12:45 I was wondering if they had forgotten about me (which they do unless you forget to fill out one of the forms, which I did) until the guy at the desk barked my name and informed me that my paperwork was "insufficient." As this is happening, I notice a guy being wheeled in ahead of me for his MRI and I am soon thereafter informed that things are considerably delayed. At this point, I tell them that I had another appointment at 1:15 for my pre-op and I really needed to get the ball rolling here at MRI so that I wouldn't be bumped from my other pre-op appointment. With that new knowledge in hand (again, why not a shared system so that they would already know that?), they suggest that I go over to my pre-op and have that done first. Well, after I wander around lost for almost 10 minutes, I ask someone where the GUMC Testing Center is and they look at me like I escaped the mental ward. By the time I asked the fourth person, I was feeling like I had escaped from a mental ward. I mean here I am at one of the best cancer hospitals in the world, and the paid professionals don't know what I'm talking about??? The only thing that is saving my sanity is that I have the appointment card in my hand and it clearly reads: GUMC Testing Center. By the time I actually get there, it's 1 p.m. and I'm fifteen minutes early for my appointment...until they hand me the biggest stack of forms yet! Slightly annoyed, I finished up the forms in record time and give them back to the secretary who delivers them to the admitting officer or nurse or whatever who date stamps the forms and then returns them to the secretary who takes them back to the nurses who will be going over all the pre-op stuff and sticking me with needles, etc. And I thought the bureaucracy in government was bad!

Just then I remember that I'm supposed to go back to the MRI department to let them know that they can see me at pre-op right now and so I'll come back later. At the MRI department, they tell me that they are ready for me now and it must be right now because or else a bigger delay later. So I go back to the GUMC Testing Center and tell them that my MRI that was scheduled for 12:15 is finally ready for me at 1:45. Luckily, the scan itself was very uneventful...just long. If you have never had to lie down, almost completely motionless, with an IV in your right arm and a "panic button" in your left hand and a clearance of about 3 inches from your face to the top of the tube you are in for 45 minutes...well, you're just letting the best in life pass you by! Suffice it to say, it is not one of the most favorable positions I have found myself.

So after the MRI, I'm headed back to pre-op where the nurses go over all my...you guessed it, paperwork and ask me questions about medical history...blah blah blah. Thankfully, the nurses realized that it had been a very frustrating afternoon for me and were very sympathetic to the fact that I had gone through all the aforementioned activities and was going to be going through a lot more...like, ummmm, surgery perhaps? So they helped me out and asked me how I was feeling and then stuck me with a needle and then gave me cranberry juice with saltine crackers. It actually was the best-tasting food I'd had in a long time because I was SO hungry. I had earlier figured I would get a late lunch after my last appointment ended before 3, but now it was about 4:30 and time for an early dinner! Anyway, the snacks tasted great and before I knew it I was done and headed back over the Potomac to go home for the weekend.

It wasn't long before I received from my mother that my dad had been admitted to the hospital for pressure in his chest. The next day it turned to severe pain and they started running tests and what not. Finally, today, the doctors performed an angiogram and found one of the vessels in his heart 100% blocked which they fixed with a stent--a relatively easy procedure. Luckily, no heart attack, or myocardial infarction for you medicine geeks out there.

So fortunately, the weekend ended on a good note...my dad got a good Father's Day gift from the Man upstairs and I got to see Batman Begins (good flick, by the way). There was a ton more stuff that happened during the weekend--both good and bad--with many having frustrating repercussions, but you'll have to wait for a more complete update on that because I'm so tired. I'm always tired these days.

Wednesday, June 15, 2005

Speed Bump

As I mentioned yesterday, I had my second appointment with the ENT today (if you don't know what ENT stands for by now, that's just tough). This morning at 9:00 I strolled into the hospital hoping for good news. If you remember, I had mentioned that I was expecting the doctor to say that I needed surgery and that the surgery would indeed be scheduled during today's visit. For being so new to the Fraternal Order of Cancer Patients, I am really starting to pick this stuff up quickly. I was right on both counts. His prognosis is that I need surgery and he even picked a day for it. June 28. I wish it wasn't so close to the 4th of July, but what does one do when his own cells are revolting against him? I'll just have to make it my own Independence Day. Independence from cancer??? Now THAT sounds like a great idea. I'm just glad that I'm living with the technology of 2005 instead of 1776--although it would have been fun to have a hand in the American Revolution...but I digress. (By the way, if you haven't read David McCullough's new book 1776, you really should because it is excellent.)

So all is going as expected until the ENT doctor tells me that the surgery will put me out of commission for 1-2 weeks! What was all this "couple of days" talk earlier? I knew that had been too good to be true. It gets better. If any of the 40 lymph nodes that are removed show up to be cancerous, then I most likely get to undergo radiation therapy, too! Talk about a double-whammy.

Let's go through this quickly:

1. I have a sore on my tongue and am told it's a 10% chance of being SCCA (Squamous Cell Carcinoma for all you newbies to my site)

2. I expect surgery to end this madness, but no, I have perineural invasion (don't ask). I learn that the chance of me having perineural invasion was negligible, but for the sake of argument, let's say it's 1%, which is probably generous.

3. I expect to have radiation to eliminate this monstrosity.

4. I am told, no, we are not going to do radiation. We will do surgery instead.

5. Now I'm hearing that the possibility of surgery AND radiation. Can I have fries with that?

As I've said many times before, quite possibly the hardest part of all of this is NOT KNOWING. It's a good lesson, however, in just letting go and not being insistent upon controlling every aspect of your environment.

One of the things that at some point I will want to know, although I don't know now, is the odds of me developing cancer in my lymph nodes. I'm sure it was small. As it stands right now, I'm the 1-in-1,000 guy without the lymph node issue factored in. Maybe I should play the lottery.

However, I do need to emphasize that they are not certain that I have cancerous lymph nodes. The PET scan showed up as inconclusive to one doctor and a weak positive to another. Better safe than sorry so we are going in. Hopefully this will just be a speed bump in the road to recovery. There is still hope that I can avoid the radiation, it may just take some divine intervention.

I realize that this entry is sort of all over the map, but I make no apologies because I think it is a fair indicator of the rollercoaster ride this is.

Before closing, I must point out that the Oregon State Beavers are in the College World Series in Omaha, Nebraska for the first time in over 50 years. This is a big deal, folks. Their first game is against Tulane on Saturday at 2 p.m. Eastern. They are clearly facing an uphill battle, but they have already beaten the odds to get where they are. And somebody's gotta win, why not the Beavers?

Tuesday, June 14, 2005

Back Online

I finally finished cleaning up my laptop and putting it back together last night. This comes after the orange juice incident almost two weeks ago that left me with a few very sticky keys that caused all kinds of problems whenever I tried to type. It was probably the most tedious thing I've done in a while. As a child, I occasionally put together some model cars and as anyone who has built model cars knows, the pieces are miniscule. Well, laptop key mechanisms are much smaller. But I persevered and the reward is worth it because my laptop is working better than ever. It is one of those rare occasions that my efforts to improve something mechanical actually succeeds.

Anyway, I'm not feeling especially motivated to write much tonight, but since I've been offline for so long I feel like I should get an update on here for my legions of screaming fans that have been asking, no, begging me for updates. Of course I'm being facetious, but it's fun to imagine.

Lest anyone forget, my second appointment with the Ear, Nose, and Throat doctor is scheduled for tomorrow morning. I can say with great confidence that I will learn nothing new from this trip to the doctor's office. Nothing new with respect to my condition, that is. The news I expect to hear is that indeed the films from my PET scan are inconclusive--something I suspected early and had confirmed by the radiation oncologist. Nevertheless, the ENT will look at them tomorrow and let me know what he thinks is the best course of action. My expectation is that this course of action will be "minimally-invasive" exploratory surgery to remove and test a couple of the lymph nodes in my neck. However, this won't happen tomorrow but I do sort of expect to find out when he is planning to perform the surgery--and in the words of my radiation oncologist, "probably sooner rather than later."

Wednesday, June 08, 2005

Alicia's Story, cont.

As I mentioned yesterday, there is a young woman who works at the San Francisco Chronicle who is writing about her cancer experience as a 23-year-old. Without question, it is some of the best writing I have ever had the pleasure to read. I don't know if it is because I can identify so closely with many of her thoughts, fears, and experiences, or if empirically it is just good, solid writing. I'm beyond the point of being without bias on these things, but obviously, she is a good writer, otherwise the Chronicle would not have given her a 7-part series to share her story.

Today was the 4th chapter. Every time I read more of Alicia's story, I am completely blown away by the similarities--not in our medical cases, but in the emotional roller coaster. In a way, I feel like it validates what I have felt so many times but was afraid to express. And I suppose that this is a big reason why I look forward to every new installment of her story. So, if you take the time to read her story and don't find it as nearly as compelling as I obviously do, count your blessings because the chances are the fears and doubts and ups and downs expressed in her writing are foreign enough to you that they shouldn't make sense. I pray that it will remain that way for all of you.

But before I sign off for this session, I must include one segment from Chapter 4 of her story that was printed today. Here we find Alicia describing her emotions after sharing with a psychologist at her hospital in San Francisco the way that she really felt.

Thank God she understood. I was getting sick of people telling me that they knew I would be fine. No one knew anything. The doctors didn't know, I didn't know and these people praying for me didn't know. I was thankful for their prayers, but I wanted to be honest. To say "I'm scared I'm going to die" and not be yelled at for being negative.

I've been to this point. I've even said some of these exact same words to some well-meaning friends. It is a place that is hard to describe. It is a place where you really feel alone--more alone than any other place you have ever been.

Tuesday, June 07, 2005

Livestrong

Yesterday was my second appointment with my radiation oncologist. What I was expecting is exactly what came to pass. The scans were inconclusive.

I was partly relieved and partly annoyed. If that sounds strange, just trust me when I say that there is a point where you just want to know, whatever the results may be.

At this point, the job of my radiation oncologist is over. He is strongly opposed to radiation until it is determined that I do indeed have cancer in my lymph nodes. However, even if I do have cancer there, he is still of the philosophy to remove them through surgery instead of by radiation in order to avoid the nasty side effects of radiation. In this case, then, he will defer to my Ear, Nose, and Throat (ENT) doctor. What happens next is some more waiting. My next appointment with my ENT is a week from tomorrow. At that time, I expect him to say that he is still unsure and to be sure will require surgery. Most likely, they will open me up, take out a few samples of lymph nodes, test them while I'm in the operating room, and if positive, remove them...if negative, stitch me back up and call it a day.

In case any of you are wondering, the prospect of this procedure does not scare me in the least.

In other news, a friend of mine from work gave me a yellow Livestrong bracelet today. I was excited to get it because I've been looking for one for quite some time.

Also, I never told you how I did in the National Race for the Cure. There were so many people that we ended up having to walk for virtually the entire first mile. The crowd would move a little bit, then stop, then move a little bit more, then stop. Even by the end of the race we were still dodging people. My final time was right around 30 minutes, which is decent considering my first mile was 12 minutes. My last mile was 8 minutes, so I felt good about that. But it still leaves a lot of room for improvement!

Completely unrelated, I'm sure that many of you have heard about the WA governor's race. But if not, you should know that it is most likely over and Mr. Rossi is not going to appeal to the WA Supreme Court. The whole situation is a pity as the superior court judge erroneously thought he would be able to get away with punting the case to the state supreme court. Oh well.

Finally, there is a compelling series of stories being written by a young lady who works for a San Francisco newspaper. Her name is Alicia and she is a copy editor for the SF Chronicle. Today she wrote the third of seven chapters about her fight with cancer. She is only 23 years old and is dealing with a lot--a ton more than I have. Her writing is absolutely gifted as well. If you want to hear an excellent first-hand story of a fight with cancer, I would strongly recommend visiting her site at http://www.sfgate.com/alicia/ She adds a chapter per day and tomorrow will be chapter 4. I'm also adding it to my list of links.

Okay everyone, I'll write more later just as soon as I can get the orange juice out of my laptop.

Monday, June 06, 2005

Big Day

For two reasons, today is a pretty big day and should answer some long yet completely unrelated unanswered questions.

The first, and with a decidedly more direct impact upon me, is my follow-up appointment with my radiation oncologist to discuss the results of last week's PET/CT scan. Hopefully, everything will be negative which will mean I probably cheated radiation treatment for up to as many as six more months. Another possibility is the exact opposite: the scans come back positive and they recommend radiation treatment starting as soon as they can make the arrangements. The third (and in my opinion the most likely outcome) is that the scan will be inconclusive or unclear and they will have to go in there physically and take several portions of my lymph nodes for testing. If negative, I'm all good. If not, then they'll have to go about removing the lymph nodes either by radiation or surgical removal.

The other issue is the Washington gubernatorial race that has been dragging on for about, ummm...forever. Today, Chelan County Superior Court Judge John Bridges will rule at 9 a.m. (PDT) on the GOP's challenge of the election results. I never know what to expect from the state of Washington, but I'm pretty optimistic that the results will go in favor of the Republicans. However, no matter the outcome, this thing is going to the Washington State Supreme Court for (hopefully) a final ruling. Given my devotion to the cause following the general election last November, I'm hoping that things go the right way for Mr. Rossi. The state really needs a new election.

Anyway, that's what I am looking forward to today. Hopefully I'll have good news to share with you all soon!

Friday, June 03, 2005

Just Call Me Radioactive Man

Wow...what a week! There was a lot going on both at work and medically.

I would have provided everyone an update earlier but an unfortunate event happened the other morning--I spilled orange juice on the keyboard of my laptop. From what I've heard, IBM makes a pretty resilient laptop, but I'm not taking any chances. I'm letting it dry out as much as possible before I try using it again. It's been more than a day now but I probably will give it another 24 hours before I try it again.

So anyway, without a computer at home, I was kind of in a fix to get information to all of you. And I certainly didn't want to stay at the office any longer than what was absolutely necessary. So because of that, there are a few things that you all need to be updated on. The first are my two trips to the hospital this week. On Wednesday, I had an appointment with an Ear, Nose, and Throat specialist. The appointment went well but there was something in one of my lymph nodes that gave reason for him to be suspicious. I've got another appointment scheduled with him in two weeks to go over the PET scan results from yesterday's appointment.

Speaking of yesterday's appointment, it went as well as I would expect. However, it still isn't fun. They hooked me up to an IV--the fourth time I'd been stuck with a needle this week--and injected me with a radioactive tracer. I then sat there as it worked it's way through my system. The funny thing in this process is that nobody really comes within a few feet of you while you've got this stuff in your body because they don't want to be exposed to radiation. How is that supposed to make me feel as it's making its way through my arteries??? I suppose the argument could be made that they do this every day and they don't want to be repeatedly exposed to low doses, but still...I've got it running through my veins.

So after they inject me with this stuff and the IV bag is empty, I wait for another half an hour to make sure that it is fully into my system. Then I climb on the PET scan machine (similar to a CT scan or MRI if you've ever had one of those) and remain as motionless as humanly possible for 25 minutes on a very uncomfortable board. It was definitely a mind-over-matter type thing.

That was yesterday. My radiation oncologist was looking at the results today and then tomorrow I have another appointment with him on Monday to go over the results. The hope is that it sheds some light on what kind of treatment I need next.

In the meantime, I hope my computer dries out soon. Also, tomorrow I'm running in the National Race for the Cure. It's a 5K that starts at 8 a.m. It should be a fun time and it will be the first race for me since a 10-miler that I ran in April of 2002. I'm trying hard to get back into running on a regular basis, but it is really hard! I suppose that is why they recommend not falling out of shape in the first place.

So that's the scoop. I feel like I'm forgetting something and I probably am, but oh well...I'll figure it out later.