We were hopeful the doctor visit today would clear me of the need for an RPLND surgery...which thankfully, it did. The tumor markers and CT scan came back in good shape and as desired. With an unexpected twist. I now have a lesion on my liver which is unlikely, and unexplained. The appearance is inconsistent with the "regular" spread of testicular cancer, and my tumor markers are normal. However, the fact that it showed up over the last ~90 days is of particular concern.
So what would've been good news has offered up the same numbness and sick feeling of my initial diagnosis...more unknowns, and this time, big question marks. There is the possibility that it is "nothing" and liver damage from the chemo. However, the doc hasn't seen that result before. Basically, nobody knows. Seeing the quote on my report that says "highly suspicious for hepatic metastases" makes me ill.
So...MRI has been ordered up. If results come back consistent for a tumor, I'll be off for a biopsy to see what I've got growing inside of me.
Ugh. I'll let everyone know more as I find out more.
Monday, December 29, 2008
Saturday, December 20, 2008
Here it Grows!
Today is the first day I've detected stubble in about 2.5 months. It was a curious feeling to say the least, and dare I say, it appears my head has some five o'clock shadow brewing. It isn't exactly the full head of hair coming back in...appears to be a bit mottled and weird, but now I must determine whether to keep it or shave it. Big decisions in the Freeman household.
I have heard quite a bit about my hair growing back differently from the way it used to be...which I think would be a big influence on whether to let it all grow back in, or stay with the bald look until I get bored of shaving my head everyday.
Clearly, I could not leave this issue unresolved. I started calling around to determine what I might be in for. My oncologist was nice enough to refer me over to a specialist, who, believe it or not, can determine with a single strand of the new hair, what my new hair is going to look like. It wasn't cheap. The results are worth it though, truly a testament to modern technology. I went ahead and posted the picture here for your consideration. Take a look, then please participate in the poll on whether I should let it grow in.
Friday, December 19, 2008
The Right Thing To Say
Now having been a part of the cancer experience, I obviously have met with several other folks in varying stages, with varied prognoses, and varied outlooks. The infusion area for cancer offers a good environment for discussion, ie
"Hey, fancy port you've got there! That's some fancy-colored chemo you're taking in, does it burn or just elicit fits of vomiting?"
Most environments just don't over the same talking points. For example, we just recently heard that our neighbor has gotten cancer again, I relived the sick feeling quickly. I just saw her a little while ago and commiserated about the "experience". She looks wonderful after her (first round of) recovery--and since we had moved in not too long ago, it was the first time I'd seen her that way. Melissa and I were devastated to hear the news and responded the only way we know how. We're going to bring them food.
I quickly realized that this experience has brought me no closer to being competent to even say hello under these circumstances. There is absolutely nothing that can be said that makes someone feel better and there's nothing you can offer that makes any of it better. You're helpless, as is the recently diagnosed person. There are few circumstances in life that contain both people so completely and prevent either one from helping the other out of the mess. You stand there and stare, or you exchange niceties making both of you feel more awkward about the giant elephant in the room. The pastors that stopped by to talk with me were far more effective, but I take them out of our human category...both because, well, that's their calling and second because if any of the rest of us talked like that, we'd be a pastor.
So, generally, we're useless at this. After trying to think of why, it occurred to me that that's why God created dogs and cats. They don't say the wrong thing, they tilt their head appropriately when you discuss the issues with them and will curl up beside you (which is generally frowned upon when you're with neighbors).
So, I recommend that you bring any newly diagnosed person a puppy or kitten. You may have to bring it home with you afterward, but trust me, it'll make the conversation a lot easier. And at least someone goes home with a puppy or kitten. Bring one of each and everybody wins.
Go ahead. Tell me I'm wrong:
Monday, December 15, 2008
Treatment Is Its Own Patient
As I get further into the grind here, I've come to realize many things are not as you would expect. At a certain point it became evident that my Treatment was its own animal, something that I needed to care for as much as anyone else. Here's what I've learned:
Oncologists Manage Cancer. They do not manage patients. I'm sure there are exceptions to the rule, and I don't think this is a bad thing. Dr. D described it best when he aptly stated "you don't need to like me, I just have to do my job well". Pretty accurate, when you understand his job is to get rid of cancer. Not to be your best friend, not to manage any other illness, not really to figure out how well you're feeling on a day-to-day basis. They look at data, CT scans and medical journals. You are a periodic visitor to what they are there to understand, you just happen to be the one carrying the goods they're paying attention to...get used to it, understand it, and use it to your advantage. Oncologists will manage information flow to patients so they can, in turn, manage the cancer more effectively. They want to stop seeing you as soon as they can--it means they've done their job.
Nurses Manage Administration of Treatments. They do not manage cancer. The nurses are omnipresent and often extremely knowledgeable about your cancer. They are your front line for everything from nausea, to miscellaneous pain, to any other immediate situation. They generally make sure that to keep you well enough to receive the drugs/radiation/surgery that is prescribed. You'll find yourself in a world of confusion if you try to find out more about your cancer, prognosis or treatment plan if you ask a nurse. They are well intentioned, but they are not your Oncologist. Asking them whether your AFP has dropped quickly enough should elicit a blank stare. If it does not, beware of the answer...it isn't from your doc.
You Manage The Intersection of Cancer and Administration. Docs are busy, nurses are busy. Each of them are seeing at least 200 other people in your same situation, many have patient loads of >1,000. They will see your file for approx 2 mins before seeing you. You are not memorable, you are not their favorite, you are chart number 2359802785. If there are things that the doctor has stated that need to happen that haven't...you better damn well follow-up yourself. They have too much to manage. This is especially problematic for what I'll call "secondary" work (i.e. getting a new drug, scheduling a CT, meetings with any other specialist). The doc will think of it, make a note, and pass it through a congested system. You better take a note too, and you better call and make sure everything is scheduled, humming and clicking as necessary. You think you're getting a new IV drug? Check the label. Seriously. You know you need tumor markers drawn? Ask everyone, the person drawing the blood, the infusion lead, the nurse and double-check on your way out. You know that CT scan is supposed to happen? Better call to make sure. My Oncologist said it best "You manage yourself and your treatment. Don't trust anyone."
More to come...
Thursday, December 11, 2008
Happy New Year!
Seriously? I think we're about done with 2008.
The last couple days have been ridiculous. I swear someone's just trying to break us, but alas, I have a solution that they haven't thought of. Read along dear reader, you're about to be surprised.
...
So, into recovery here until we get the next round of markers, and other than a sick stomach everything was looking up. Then the random acts of ridiculousness start.
Tuesday, Dec 9. 08:11. Receive the call from Melissa that she'd just run over a brick on the highway on the way to work. Everything's okay, she's off to the side safely...but seriously, a brick? Tires, chairs, even mattresses are the norm...a damn brick? So, one already new tire successfully destroyed. Can I replace the tire myself? Oh no, German engineering is to smart for that.
Spare tire? Check.
Jack? Check.
Lug nut wrench? Check.
Fancy little key to remove caps from lug nuts? Nope, you need one of those from the dealership.
If anyone can explain to me the logic of including all of the rest of the tools, but omitting the damn necessary tool to get started in the first place, you win $50.
So, drop off Melissa, wait by disabled car. Tow truck an hour later, dealership talk.
New (expensive) tire $180.
Alignment $78.
Removal of bastardly little caps from lug nuts, $25.
Fact that they never actually removed the bastardly little caps (realized yesterday)...priceless.
Wednesday, Dec 10. 07:49. Home phone rings, Melissa again. I don't figure she's got on the highway yet, so hopeful another brick hasn't fallen into our lives. Ah, much more creative this time! Bricks are boring...rectangular, heavy, all the same. Blah. However, pumpkins are much more exciting, especially when tossed from a car. They tend to explode, and I hear the seeds create a shower of effervescent joy for all who watch. Especially when said effervescent joy is hitting a mailbox. Our damn mailbox.
"Look out the window" (editor's note: the last time this writer was asked to look out the window, a large tree had fallen, cutting down two power poles and locking us into our home surrounded by downed high-voltage lines).
Editor pauses and thinks "this can't be good".
Editor looks anyway.
One mailbox located about 10 yards from where it should be. Wooden stand still attached, though decidedly incapable of now supporting a 3 pound mailbox. Orange effervescent joy scattered around said mailbox.
Of course, the first question that comes to mind is "where do you get a pumpkin in freakin December?!" I mean, if this happened in October it would've made some sense. The perps need to get seasonal updates to their weapons. Random acts of vandalism just aren't as funny if they're not seasonally relevant.
Got a feeling this wouldn't have happened if we had, you know, street lights (recall story about downed power poles...). But alas, Georgia Power will take care of those "as soon as possible". I'm holding my breath.
Raining too hard to replace the mailbox. Have a feeling that once I replace it I'll get a letter from the IRS delivered to my spiffy new box.
Thursday, Dec 11. 07:30. Writer turns off phones. Better safe than sorry. Editor begins plotting...
Since 7:30 this morning I have pulled all negative news stories from the last 345 days. I googled it, and there are 24,175,480,172 negative news stories during that period. Using a multivariate regression analysis I have clear correlative data that all of these negative items have exactly one thing in common. 2008. Try to dispute it. I dare you.
There is only one solution, one so grand, and so simple, the population has simply overlooked it.
The end of 2008.
As such, I declare the official end to 2008. From now till 2009, we are in the month of Freemanuary, year 200n. To reset your calendars, here are some key dates:
New Years Day. Freemanuary 1st, 200n. Today. Don't feel hungover? Well I do. So it counts. The fact that I've felt hungover for the last 3 months is irrelevant.
Christmas Day. Freemanuary 15th, 200n.
New Years Eve. Freemanuary 21st, 200n. To be celebrated at our house. Everyone's invited.
In summary, 200n will be full of food, drink and presents. 2008 was full of bricks, pumpkins, power lines and other miscellaneous bad stuff. I believe this will fix everything. Stay tuned.
Happy New Year!
Friday, December 5, 2008
Last Day of Chemo
So, here I go. I haven't felt this mixed in a while. My body is just about to give up, not much is working right at this point. Hair is out, can't sleep well, can't eat well, can't drink well, nauseated, nothing internally wants to work anymore, vision is blurry and I'm shaky. But, after today things turn the corner. So, if you've got a drink handy, raise it and take a sip. Because damn it, this is almost done.
As many of you have heard, my markers came back almost okay this time. HCG is under 2, desired = 0. AFP is at 10, again desired of 0. That puts me on the almost surveillance route towards avoiding surgery...hearby named the "aggressive surveillance" route. Basically, they'll test my blood more frequently to see if those markers start creeping back up. If so, we'll dig in and cut out all the remaining nonsense. While I'd prefer not to go there, there is some solace to having your cancer sitting in a pathologist's lab vs. in your body. Therefore, if it must be cut out, so it goes.
We get a 3 week break before the next round of markers. So, we'll count our blessings headed into Christmas, a 3 week reprieve from treatment, and enjoy it fully with family and friends. Whatever they end up being at that point, at least we'll be within range of finishing this battle. Nobody yet knows what else this war can bring...but for now, we'll be content with finishing this battle and taking some R&R.
Tuesday, December 2, 2008
Hallmark (or American Greetings!) Cards
I was pretty overwhelmed by the responses to the post last week with the few things I've learned. I got quite a few emails, along with the comments, with a lot of great comments about what you guys learned from my ramblings. Maybe one of those silver linings...
Cards, emails, comments...anything is important. Yes, it is very hard to keep up with everyone and reply, but every bit of support is wonderful. I understand that my comments about not feeling/being strong or courageous seem like I don't want to hear it from you...but I'm not sure that's the case either. This is one of those journeys where it is the thought that counts, if your note is written on the back of a bar napkin, it is just as nice to get. Your card/email/comment is only a carrier for the fact that you wrote it in the first place. That's meaningful beyond the words you put down. However, I reserve the right to ridicule anything in the name of "laughter is the best medicine".
Almost through day 2 of round 4...the haze is beginning to fall around me, so I may not be the most talkative guy through the rest of the week. I'm likely off on a journey to the other side of the looking glass for the next bit...
Cards, emails, comments...anything is important. Yes, it is very hard to keep up with everyone and reply, but every bit of support is wonderful. I understand that my comments about not feeling/being strong or courageous seem like I don't want to hear it from you...but I'm not sure that's the case either. This is one of those journeys where it is the thought that counts, if your note is written on the back of a bar napkin, it is just as nice to get. Your card/email/comment is only a carrier for the fact that you wrote it in the first place. That's meaningful beyond the words you put down. However, I reserve the right to ridicule anything in the name of "laughter is the best medicine".
Almost through day 2 of round 4...the haze is beginning to fall around me, so I may not be the most talkative guy through the rest of the week. I'm likely off on a journey to the other side of the looking glass for the next bit...
Monday, December 1, 2008
Beginning Round 4
All plugged in as session 4 of 4 begins. Today was a rough start. A tree fell over next door, hit the power lines and snapped two power poles including the one directly in front of our house. Big bang, power out, cold house...and we couldn't leave. The power lines were draped across the front of our driveway, more lines across the road on one side, a large tree across the road on the other side. Ominous start to the week.
I was looking for an excuse to skip chemo, and I think this was it. However, we called in the favor with Andrew and were on our way to the hospital.
So, late start, late finish, probably almost till 5pm. Wheeeee.
This week will be a big week. From what we know, we'll get a much more clear picture on whether surgery is going to happen. Tumor markers should be back on Weds. If they're not normal (i.e. 0), I'll go for an "immediate" CT scan to check the size of the lymph nodes. Then we'd get to planning on the surgery, which could come a lot more quickly than we'd thought...and maybe more quickly than we'd hoped. If it comes to that, we'll have to see where we'll schedule it (maybe Indiana?)...so have the fun of working through insurance, timing, travel, etc. Given my stellar timing so far (surgery on my birthday), I'm sure it'll get scheduled for the 24th or 26th, while we're planning to have everyone in town.
Until then, we'll just keep praying that there's no surgery in our future and we get to go the surveillance route and sidestep the surgical option. However, whatever happens, happens...we'll just roll with the punches.
Wednesday, November 26, 2008
Back By Popular Demand
Surprisingly, people apparently read the nonsense I write here. And they apparently send me notes when I don't write for a while. I believe I know have more readers than the AJC, my advertising revenue is probably competitive.
So, as we head towards Thanksgiving, instead of doing the obvious and writing about things we should give thanks for, I thought I'd write about the lessons learned over 2 1/2 months with cancer.
1. On Strength & Courage: I was a bit mixed on writing this, but I think it is important--and something that other patients have shared to be the same reaction. Being told you have strength or courage is a tough thing to consume while you're fighting cancer (for some of us). See, we didn't choose this battle, and if we had any option whatsoever, we'd choose not to fight. We've ended up with a multiple choice question that says A) Undergo Treatment B) Die ...there looms firm the C) All of the Above, but we won't go there for now. A) is clearly the only option. We don't make that choice with any kind of strength or courage, we make that choice out of necessity. That being said, being diagnosed is kind of like being drafted. You don't want to go, there's the distinct possibility of dying, you're under someone else's control and while you're there, things are going to be terrible. That doesn't prevent the draftee from getting the medal of honor while he's a soldier, but at any moment he will do whatever possible to come home and return to his regular life. Both stories are about survival first, with the opportunity to serve others in a terrible situation. Many cancer survivors show their strength and courage long after they have taken care of the survival part in order to help others with the disease...those are the folks we both value the most. Right now I just feel like a draftee in the trenches, nothing too glamorous about that.
2. Survival does not necessarily mean a "perfect" outcome. My, and in many cases, our, knee jerk response to cancer is to evaluate a survival rate. In my case it is as good as it gets, about 95% within 5 years. It has taken me some time to realize that survival is only one component to evaluate--quality of life, and the difficulty of getting to "survival" are critical pieces to the survival puzzle. Complications from the disease, the chemo and surgery are likely and long-lasting. Anything from going deaf to never having kids, all on the possibility list, aren't a factor in that 95% which only confirms a beating heart. There's also the possible loss of kidney and/or liver function, which in the long term can definitely affect life expectancy. Survival doesn't mean "everything is going to be okay"--it means you're alive. Certainly reason to celebrate, but be careful not to assume it is the only thing the person cares about.
3. You don't have to be a "rock". We're all human here. For some reason people think they have to "look strong" around a patient, I'm not so sure that's true. There are few things more humbling than finding out someone is crying for you and scared with you. The day of my surgery where I had an entourage of the most beautiful women in the world (my brother included), seeing fear and tears in their eyes was okay and even reassuring. As cards, emails and messages pile up from people whom I've known well to haven't known at all, it helps to remind me that thankfully people aren't all wired like me...pretty much a non-emotional freak. It defies logic that people pray for people they don't know and send cards & gifts to people they barely know. Logically that reminds me that there's something else about us, something that I may not always "get", but that I can see exists.
4. It sucks. Encouraging thoughts only go so far, and I know that positive visualization is good. However, most of the time, you just want people to agree that the whole situation stinks. I'm sure some good will come of it, silver lining and all that...but hey, this sucks. Say it with me. Loud & Proud. It sucks. A lot. When you say it sucks, it helps both of us to share the experience a little more...and helps me to understand that you "get it".
5. Anxiety. For people who are used to managing things in their lives, cancer just tears apart a lot of your norms. Your schedule isn't yours, someone else tells you where to be, when to be there and why. Your future isn't yours, it is a blurry goal...something between what you'd planned on only a few months earlier and the looming worry that you won't get there as you hoped. This anxiety is what survivors talk about...long after the cards stop arriving, the prayers stop being said and the calls stop being made, the survivor is waiting on the next blood test to see if it has come back. That's the hard part, that's what leads people into depression. You just never know when or if it will find you again.
6. Knowledge is a double-edged sword. From what I can tell, Oncologists try to limit your scope of existence to the next battle...not overwhelming you with the war at large. So you learn bits and pieces about your situation as you walk through the field and they become relevant to you over the horizon. The stuff on the other side of your field of vision may kill you, but they don't tell you that right away. They want you to deal with today's battle. The Internet changes that, through other people's experiences, medical journals, etc. you can find out a lot about where you're about to tread...but you know that without knowledge of your specific situation. You don't know where your markers will be, or how big your lymph nodes will be, but you know what will happen if they're too high, or too big. So you think about it, and the complications of that possible battle. And all the scenarios...all before you know what will happen with you. Every test result, every blood test, etc. give you slight indicators and leave you hanging for more information. Everyone has their own breaking point with knowledge. Too much causes unnecessary worry and panic, too little causes poor decision making. It is a careful balance and I'm unsure anyone gets it right. Our fate isn't in our control, and there are many bits of information that will only cause additional anxiety. Sometimes it is okay when we would just rather not know.
7. Communication is hard. Especially for people like me who tend not to communicate and/or don't do it very well. There are quite a few people to reply to and thank for their notes, cookies, prayers and gifts. You're probably one of them. It is overwhelmingly difficult to contact everybody, our days would be consumed with it. Every note has been read, every card has been saved and every cookie shared (or eaten quickly to hide evidence). Close friends & family sometimes don't hear the whole story while a perfect stranger knows intimate details. That's the way this goes...it isn't that we don't want people to know, or that you're somehow less important. Every bit of generosity and thoughtfulness is cherished.
8. Cancer is different. Chemo is different. People are different. My surgery, chemo regimen and my personal reaction are all different from other similar cancer patients, and dramatically different from other types of cancer patients. Before I had cancer I didn't realize this. Cancer was cancer was cancer. Chemo was all the same. In fact, I read a journal about a women with breast cancer's chemo experience and assumed my chemo would be the same. I assumed I'd head in once a month or so, get chemo with friends for 3 hrs, feel crappy for about 12 hrs, then go on with life. Clearly that was not the case...I was very wrong. Her specific type of chemo was very different from mine and therefore her reaction was different from mine. Don't assume because you know this story you know anyone else's...or that you can predict their outcome and say "I knew a guy and he survived." Remember #2 & #4. Respect that their situation, no matter what, is very different from mine.
9. It is okay to ask questions. Even awkward or hard ones. From the folks I've talked to, cancer patients become increasingly pragmatic about their body, their diagnosis and the side effects. Family and friends watching on the sidelines often have questions about big things and small things related to cancer, chemo and the surgery. Believe me, we've gotten used to talking about it. You asking about my surgery isn't nearly as difficult to cope with as having several strangers fondle my genitals for hours trying to diagnose me--yes, gross, but as a point, pragmatic. Neither of us wanted to be there. But it is what it is. You asking about hair loss isn't as strange as looking at myself in the mirror. You asking about how scared I am isn't nearly as difficult as being as scared as I am. For guys my age this is especially relevant...how I found out, why I went to the doctor, how I felt are all very important things and things that guys don't talk about. Information that ultimately could help one of your friends or family self-diagnose a bit earlier and keep their quality of life significantly better through their treatment. Maybe they diagnose a few weeks earlier and avoid chemo. Ask the questions if you're curious. This cancer doubles in size every 14 days. Discovering and treating it two weeks earlier can mean the difference between having a family and not having a family.
10. Writing makes everything look different. Pictures capture a moment in time. Failed marriages can look great on film, you know, everyone is smiling. Nobody is there for a Kodak moment while you're yelling at each other. On the flip side, you tend to write or communicate at emotional highs & lows. Most days are mundane. You feel slightly sick, you're worried about the results of your next blood test and nothing new has happened. SNAFU. But when you feel really sick, or really good, man do you want to tell everyone! Again, having cancer is a bit like being drafted. 98% of the time you're waiting, marching, looking out for the enemy. Occasionally your existence is punctuated by extreme duress or happiness. You get used to being anxious and uncomfortable, you get used to only talking about the shitty situation you're in. The stories that are worth writing home about are the big ones...not the everyday drudgery, the rinse-wash-repeat story of survival. You guys are getting the AP pictures. Most days aren't photo worthy.
So there, a perfect 10. I'm sure I'll come up with some more valuable tidbits of information to share :)
Until then, I'm going to go eat turkey with family and talk about football, politics and economics. My wife will shake her head and ask me to change the topic.
Then next week I'll get this phase of the battle over with. Unsure if I have another battle to fight just over that horizon.
So, as we head towards Thanksgiving, instead of doing the obvious and writing about things we should give thanks for, I thought I'd write about the lessons learned over 2 1/2 months with cancer.
1. On Strength & Courage: I was a bit mixed on writing this, but I think it is important--and something that other patients have shared to be the same reaction. Being told you have strength or courage is a tough thing to consume while you're fighting cancer (for some of us). See, we didn't choose this battle, and if we had any option whatsoever, we'd choose not to fight. We've ended up with a multiple choice question that says A) Undergo Treatment B) Die ...there looms firm the C) All of the Above, but we won't go there for now. A) is clearly the only option. We don't make that choice with any kind of strength or courage, we make that choice out of necessity. That being said, being diagnosed is kind of like being drafted. You don't want to go, there's the distinct possibility of dying, you're under someone else's control and while you're there, things are going to be terrible. That doesn't prevent the draftee from getting the medal of honor while he's a soldier, but at any moment he will do whatever possible to come home and return to his regular life. Both stories are about survival first, with the opportunity to serve others in a terrible situation. Many cancer survivors show their strength and courage long after they have taken care of the survival part in order to help others with the disease...those are the folks we both value the most. Right now I just feel like a draftee in the trenches, nothing too glamorous about that.
2. Survival does not necessarily mean a "perfect" outcome. My, and in many cases, our, knee jerk response to cancer is to evaluate a survival rate. In my case it is as good as it gets, about 95% within 5 years. It has taken me some time to realize that survival is only one component to evaluate--quality of life, and the difficulty of getting to "survival" are critical pieces to the survival puzzle. Complications from the disease, the chemo and surgery are likely and long-lasting. Anything from going deaf to never having kids, all on the possibility list, aren't a factor in that 95% which only confirms a beating heart. There's also the possible loss of kidney and/or liver function, which in the long term can definitely affect life expectancy. Survival doesn't mean "everything is going to be okay"--it means you're alive. Certainly reason to celebrate, but be careful not to assume it is the only thing the person cares about.
3. You don't have to be a "rock". We're all human here. For some reason people think they have to "look strong" around a patient, I'm not so sure that's true. There are few things more humbling than finding out someone is crying for you and scared with you. The day of my surgery where I had an entourage of the most beautiful women in the world (my brother included), seeing fear and tears in their eyes was okay and even reassuring. As cards, emails and messages pile up from people whom I've known well to haven't known at all, it helps to remind me that thankfully people aren't all wired like me...pretty much a non-emotional freak. It defies logic that people pray for people they don't know and send cards & gifts to people they barely know. Logically that reminds me that there's something else about us, something that I may not always "get", but that I can see exists.
4. It sucks. Encouraging thoughts only go so far, and I know that positive visualization is good. However, most of the time, you just want people to agree that the whole situation stinks. I'm sure some good will come of it, silver lining and all that...but hey, this sucks. Say it with me. Loud & Proud. It sucks. A lot. When you say it sucks, it helps both of us to share the experience a little more...and helps me to understand that you "get it".
5. Anxiety. For people who are used to managing things in their lives, cancer just tears apart a lot of your norms. Your schedule isn't yours, someone else tells you where to be, when to be there and why. Your future isn't yours, it is a blurry goal...something between what you'd planned on only a few months earlier and the looming worry that you won't get there as you hoped. This anxiety is what survivors talk about...long after the cards stop arriving, the prayers stop being said and the calls stop being made, the survivor is waiting on the next blood test to see if it has come back. That's the hard part, that's what leads people into depression. You just never know when or if it will find you again.
6. Knowledge is a double-edged sword. From what I can tell, Oncologists try to limit your scope of existence to the next battle...not overwhelming you with the war at large. So you learn bits and pieces about your situation as you walk through the field and they become relevant to you over the horizon. The stuff on the other side of your field of vision may kill you, but they don't tell you that right away. They want you to deal with today's battle. The Internet changes that, through other people's experiences, medical journals, etc. you can find out a lot about where you're about to tread...but you know that without knowledge of your specific situation. You don't know where your markers will be, or how big your lymph nodes will be, but you know what will happen if they're too high, or too big. So you think about it, and the complications of that possible battle. And all the scenarios...all before you know what will happen with you. Every test result, every blood test, etc. give you slight indicators and leave you hanging for more information. Everyone has their own breaking point with knowledge. Too much causes unnecessary worry and panic, too little causes poor decision making. It is a careful balance and I'm unsure anyone gets it right. Our fate isn't in our control, and there are many bits of information that will only cause additional anxiety. Sometimes it is okay when we would just rather not know.
7. Communication is hard. Especially for people like me who tend not to communicate and/or don't do it very well. There are quite a few people to reply to and thank for their notes, cookies, prayers and gifts. You're probably one of them. It is overwhelmingly difficult to contact everybody, our days would be consumed with it. Every note has been read, every card has been saved and every cookie shared (or eaten quickly to hide evidence). Close friends & family sometimes don't hear the whole story while a perfect stranger knows intimate details. That's the way this goes...it isn't that we don't want people to know, or that you're somehow less important. Every bit of generosity and thoughtfulness is cherished.
8. Cancer is different. Chemo is different. People are different. My surgery, chemo regimen and my personal reaction are all different from other similar cancer patients, and dramatically different from other types of cancer patients. Before I had cancer I didn't realize this. Cancer was cancer was cancer. Chemo was all the same. In fact, I read a journal about a women with breast cancer's chemo experience and assumed my chemo would be the same. I assumed I'd head in once a month or so, get chemo with friends for 3 hrs, feel crappy for about 12 hrs, then go on with life. Clearly that was not the case...I was very wrong. Her specific type of chemo was very different from mine and therefore her reaction was different from mine. Don't assume because you know this story you know anyone else's...or that you can predict their outcome and say "I knew a guy and he survived." Remember #2 & #4. Respect that their situation, no matter what, is very different from mine.
9. It is okay to ask questions. Even awkward or hard ones. From the folks I've talked to, cancer patients become increasingly pragmatic about their body, their diagnosis and the side effects. Family and friends watching on the sidelines often have questions about big things and small things related to cancer, chemo and the surgery. Believe me, we've gotten used to talking about it. You asking about my surgery isn't nearly as difficult to cope with as having several strangers fondle my genitals for hours trying to diagnose me--yes, gross, but as a point, pragmatic. Neither of us wanted to be there. But it is what it is. You asking about hair loss isn't as strange as looking at myself in the mirror. You asking about how scared I am isn't nearly as difficult as being as scared as I am. For guys my age this is especially relevant...how I found out, why I went to the doctor, how I felt are all very important things and things that guys don't talk about. Information that ultimately could help one of your friends or family self-diagnose a bit earlier and keep their quality of life significantly better through their treatment. Maybe they diagnose a few weeks earlier and avoid chemo. Ask the questions if you're curious. This cancer doubles in size every 14 days. Discovering and treating it two weeks earlier can mean the difference between having a family and not having a family.
10. Writing makes everything look different. Pictures capture a moment in time. Failed marriages can look great on film, you know, everyone is smiling. Nobody is there for a Kodak moment while you're yelling at each other. On the flip side, you tend to write or communicate at emotional highs & lows. Most days are mundane. You feel slightly sick, you're worried about the results of your next blood test and nothing new has happened. SNAFU. But when you feel really sick, or really good, man do you want to tell everyone! Again, having cancer is a bit like being drafted. 98% of the time you're waiting, marching, looking out for the enemy. Occasionally your existence is punctuated by extreme duress or happiness. You get used to being anxious and uncomfortable, you get used to only talking about the shitty situation you're in. The stories that are worth writing home about are the big ones...not the everyday drudgery, the rinse-wash-repeat story of survival. You guys are getting the AP pictures. Most days aren't photo worthy.
So there, a perfect 10. I'm sure I'll come up with some more valuable tidbits of information to share :)
Until then, I'm going to go eat turkey with family and talk about football, politics and economics. My wife will shake her head and ask me to change the topic.
Then next week I'll get this phase of the battle over with. Unsure if I have another battle to fight just over that horizon.
Tuesday, November 18, 2008
Wow. I've basically been asleep or sick for the last 6 days. The sickness was a lot more overwhelming this time, keeping me on meds since about Thursday last week. The side-effect is being completely knocked out for 4-6 hours at a time, so I have been on the couch/in-bed since that time. Mostly a haze of sickness disturbed by fleeting moments of sobriety.
The severity and longevity of the side-effects went up significantly. Whereas before I was almost back on my feet by Sunday/Monday, this time even yesterday was a fog. I finally got off the meds yesterday which made for a "regular" night and morning today.
Food isn't just tasteless, it is awful. There is no pleasure whatsoever in eating, missing flavors are replaced by weird bitter results. The food stays in my stomach for hours making me sick...never feels like it is fully "down" just sitting there in my throat for the "right" opportunity. On Sunday I had a sandwich for lunch that still felt like a brick in my stomach at 3 am. Ugh.
Well, at least it is nearing the end. Round 3 is done and I can walk around the house...although getting from one end to the other requires a short break in between. 4 weeks from now and this phase will be done, hopefully no additional surgery, but we're getting our heads prepared for it if need be. Melissa reminded me to be thankful that the first two rounds went so easily. And it is true, while this one stunk, it would've been a lot worse if I'd been down this round two prior times.
I'm sure I'm not making a whole lot of sense, so I'll cut the post at that. Time for a nap.
The severity and longevity of the side-effects went up significantly. Whereas before I was almost back on my feet by Sunday/Monday, this time even yesterday was a fog. I finally got off the meds yesterday which made for a "regular" night and morning today.
Food isn't just tasteless, it is awful. There is no pleasure whatsoever in eating, missing flavors are replaced by weird bitter results. The food stays in my stomach for hours making me sick...never feels like it is fully "down" just sitting there in my throat for the "right" opportunity. On Sunday I had a sandwich for lunch that still felt like a brick in my stomach at 3 am. Ugh.
Well, at least it is nearing the end. Round 3 is done and I can walk around the house...although getting from one end to the other requires a short break in between. 4 weeks from now and this phase will be done, hopefully no additional surgery, but we're getting our heads prepared for it if need be. Melissa reminded me to be thankful that the first two rounds went so easily. And it is true, while this one stunk, it would've been a lot worse if I'd been down this round two prior times.
I'm sure I'm not making a whole lot of sense, so I'll cut the post at that. Time for a nap.
Wednesday, November 12, 2008
The Battle of Midway
Round 3 is definitely becoming more dicey than the previous rounds. Sickness has set in a lot earlier, and tends to linger...appetite and thirst are waning too. I'm still forcing down the water, fruit & veg do good too. No fun though, kind of leaves you in sea of fog. The rest of the week is looking like a bit of a chore, but I've got my dad here to carry me around, so I suppose the burden may be on him :)
A new set of tumor markers are back...10 days from the prior and still moving in the right direction. HCG b is 10 mIU/mL (was 39), AFP is 66 ng/mL (was 174). Both still high, but trending well. Doc had hoped we'd be in range of 0 by now, but no reason to panic, we'll measure up next time and hopefully be there. Trending tells me the HCG b should be down to about 1 next measurement, AFP down to 16. Hopefully we can defy the trends and hit the big 0.
Almost 3/4 of the way there!
A new set of tumor markers are back...10 days from the prior and still moving in the right direction. HCG b is 10 mIU/mL (was 39), AFP is 66 ng/mL (was 174). Both still high, but trending well. Doc had hoped we'd be in range of 0 by now, but no reason to panic, we'll measure up next time and hopefully be there. Trending tells me the HCG b should be down to about 1 next measurement, AFP down to 16. Hopefully we can defy the trends and hit the big 0.
Almost 3/4 of the way there!
Friday, November 7, 2008
Highs & Higher
Man, just had a stressful visit to the doctor. I finally received my first set of post-chemo tumor markers back...and they were elevated. AFP was 174 vs normal of 0-6...a mere 29x normal, and HCG (beta), 39 vs. 0-9, or 4x. No doc or nurse immediately available to interpret for me (my choice), so immediately I placed my heart in my throat and swallowed hard.
These are the moments when being good at math don't help you...variances are calculated all too quickly, and outside of winning the lottery, there are few times when something exceeds normal by 2,900% and anything good can come of it.
Back home with the news to scour for the one thing that matters...a benchmark. I searched for both my prior results (which I didn't have), and started my online search. Rarely do you find that Google fails you...but it did. While there are sites telling you what the markers are, and the oh-so-helpful "normal" range, (that 0-6 number again). Finally got on the horn with my urologist to get my old set of labs.
...holding breath...
HCG dropped from 1,607 to 39.
AFP dropped from 1,988 to 174.
...exhale...
Now those are good variances...98 & 91% respectively. I'm no doctor, it could still be bad...but hell, I'll enjoy my personal interpretation for now.
It is rumored that hair grows back in all different ways post-chemo. This picture, and related hair, have nothing to do with that. No, they are the result of having a jackass for a brother.
Tuesday, November 4, 2008
SNAFU
If you don't like military obscenities, you may want to avoid looking that up. It does appropriately describe hitting the halfway point though. Melissa is now used to the bald head, we were looking through pictures last night and she was shocked by "how long my hair was".
I'm getting more used to it also, though I miss shampoo. Using a block of soap on the noggin is somewhat unceremonial, it denies the head all the typical exciting cranial nourishment promised by the shampoo companies. In fact, this morning I reached for it this morning and thought, just for a second, I wonder if my scalp will be revitalized with some ginger root herby goodness? I held off, I'll save it for a time when my scalp is crying out for attention.
Outside of the baldness factor, the aches & pains, bruises, and mild sickness have just become the norm. Talking about cancer is still the routine, but no longer unsettling, you just get used to telling the story.
The cancer routine, events and emotions just take you to a new existance from which I think only politics and football can deliver you. "Regular" events still remind you that the world continues to march on...this week was the placement of a UF gator cheerleader costume on our back fence. After the football debacle on Saturday, our "backyard neighbor", a UF fan (we're working on modifying the community covenants to screen for this affliction prior to move-in), placed the effigy on our fence. The best part of the weekend came when I released our mutt into the backyard...who promptly ran right for the costume, barking like crazy the whole way, and tried to tear it off the fence. The first useful thing he's done since I got him. Though the game was a disappointment, it was a welcome trip back to the rest of the world...even the ridicule can be a nice respite.
The WBCs, platelets and other counts are all in good shape, and should remain so through the rest of the week...so we're on track for Round 3 next week. Can't say I'm looking forward to it, it just became regular, routine, rote. Rinse, wash, repeat.
So this is the way the next round begins, not with a bang but a whimper.
I'm getting more used to it also, though I miss shampoo. Using a block of soap on the noggin is somewhat unceremonial, it denies the head all the typical exciting cranial nourishment promised by the shampoo companies. In fact, this morning I reached for it this morning and thought, just for a second, I wonder if my scalp will be revitalized with some ginger root herby goodness? I held off, I'll save it for a time when my scalp is crying out for attention.
Outside of the baldness factor, the aches & pains, bruises, and mild sickness have just become the norm. Talking about cancer is still the routine, but no longer unsettling, you just get used to telling the story.
The cancer routine, events and emotions just take you to a new existance from which I think only politics and football can deliver you. "Regular" events still remind you that the world continues to march on...this week was the placement of a UF gator cheerleader costume on our back fence. After the football debacle on Saturday, our "backyard neighbor", a UF fan (we're working on modifying the community covenants to screen for this affliction prior to move-in), placed the effigy on our fence. The best part of the weekend came when I released our mutt into the backyard...who promptly ran right for the costume, barking like crazy the whole way, and tried to tear it off the fence. The first useful thing he's done since I got him. Though the game was a disappointment, it was a welcome trip back to the rest of the world...even the ridicule can be a nice respite.
The WBCs, platelets and other counts are all in good shape, and should remain so through the rest of the week...so we're on track for Round 3 next week. Can't say I'm looking forward to it, it just became regular, routine, rote. Rinse, wash, repeat.
So this is the way the next round begins, not with a bang but a whimper.
Wednesday, October 29, 2008
Time for generics
If you had any plans to buy me expensive wine, or take me out for lavish dinners, let's put them on hold for now*. The good news is food no longer seems like it is all made from powder. The bad news is that it no longer has any taste.
It is pretty weird, I can still get the general sense for what I'm eating...sweet, sour, etc. but the specific flavor is all but gone...and everything tastes like chicken. So, if you've got a favorite place for dinner...its my new favorite too!
Runny eggs? Yum!
10-day old meatloaf? Bring it on!
Fruitcake? Did you say steak?!
Grits? Yeah, about the same.
So, my list of chemo cut-backs for the frugal cancer patient:
-Any meal over $7
-Any bottle of wine over $2 (**caution as this may lead to an increased/offsetting investment in Advil)
-Shampoo
-Razors & shaving cream
-Barber
-Tickets for amusement parks, zoos, ball games and generally any place full of sniffling children.
*Just kidding, please send me the wine anyway. Lavish dinners will be accepted dutifully sometime next year.
It is pretty weird, I can still get the general sense for what I'm eating...sweet, sour, etc. but the specific flavor is all but gone...and everything tastes like chicken. So, if you've got a favorite place for dinner...its my new favorite too!
Runny eggs? Yum!
10-day old meatloaf? Bring it on!
Fruitcake? Did you say steak?!
Grits? Yeah, about the same.
So, my list of chemo cut-backs for the frugal cancer patient:
-Any meal over $7
-Any bottle of wine over $2 (**caution as this may lead to an increased/offsetting investment in Advil)
-Shampoo
-Razors & shaving cream
-Barber
-Tickets for amusement parks, zoos, ball games and generally any place full of sniffling children.
*Just kidding, please send me the wine anyway. Lavish dinners will be accepted dutifully sometime next year.
Monday, October 27, 2008
Mushroom Topping
You'll have to bear with me, the eyes don't like the screen...so if I weave a incongrous tapistry of nonsense, you'll have to go read someone else's testicular cancer blog. Good luck with that.
This week's recovery was slightly better than last time, maybe more physically prepared, maybe more mentally prepared...who knows. The illness was there, but I packed my anti-nausea pills more closely to the belt. The toxic stomach came back, but the anti-acid's were at hand. I took the Neulasta (the long-lasting big brother hit of Neupogen) on Saturday. Same weird pain, mostly headaches...more prepared this time with my Advil on the side.
Sleep is still uncomfortable, especially as it cools down outside, your body likes to make excuses to keep you from venturing outside of the covers. So, as your bladder screams, your head pounds and your stomach wretches, it seems perfectly logical that you should wait another 15 minutes because the pillow feels good right there.
So, as I said, it is getting chilly. Not Toronto chilly, that's only for lunatics (snow!?!)...I won't even mention those who live in Ottawa. We're talking Atlanta chilly. A bit brisk, towards freezing at night, a breeze or two. Cool enough to realize that I need a critical addition to my cancer-wardrobe...a hat.
To most guys, this is a simple feat, you walk into your closet, pull out a salt/sweat stained nasty rag, place it on your freshly schorn noggin, and off you go. Doesn't work that way for me, since I was a child, no hat wished to be placed on my head. It would promptly bring ridicule and laughter as clearly a hat does not belong on my head. I've settled in recent years to the hybrid, green-hat option of the visor, I still force my head to feel the agony of global warming (those of you who know me, know the context of that statement...), while still looking delightfully good in the sun.
Anyways...for those that may have failed physics, have never seen a visor, or were otherwise unable to draw inside the lines during pre-school, the visor does not offer baldness-supportive warmth during such months. It behaves more like a chimney to freeze the core of my body capriciously with every breeze.
A toque/stocking cap seems to be the item of choice.
***Note***
This is where I clearly become a foreigner around here. Somehow the southerners have twisted the English language to accept TOBOGGAN as an acceptable substitute for toque/stocking cap. And as with all Southerners, there is no arguing, it is just the way it is. You point out what a toboggan really is, and that it would be a tad uncomfortable, even unfortunate, if one had to wear one as a hat...and their response is "I don't know what you're talking about, it is a stocking hat". "No" you say, "a stocking hat is a stocking hat, a toque is a stocking hat, a TOBOGGAN is a damned sled that kids use to ride down a mountain" "Well, its a stocking cap here." In "southern" I've learned that "here" actually means "so <bleep> off". That might be useful on any trips to come visit.
***End Note***
So, off to the store. With my supportive wife (from the "lay off the sauce" fame). We started with the mall, must be something classy, not too high-school oriented that I could pick up there, right? No dice. I tried on every damned shape and size of hat available...beanie to cowboy, dunce to bowler, toque to toboggan...all left my wife with the same glowing laugh, "you look like a mushroom!" To which she'd pat the top of my head and look for the next costume for my dress-up game. Upon the next try she might add "yeah, if you had hair, this one might look good". Damned if she weren't so cute I'd have tackled her right there in the store.
After a trip to REI, and what appears to be a military surplus hat, I now can be sheltered from the artic blasts storming Atlanta. However, supportive as my new hat may be, I'm unsure my crushed self-image will ever recover from the mushroom-ridicule of 2008.
This week's recovery was slightly better than last time, maybe more physically prepared, maybe more mentally prepared...who knows. The illness was there, but I packed my anti-nausea pills more closely to the belt. The toxic stomach came back, but the anti-acid's were at hand. I took the Neulasta (the long-lasting big brother hit of Neupogen) on Saturday. Same weird pain, mostly headaches...more prepared this time with my Advil on the side.
Sleep is still uncomfortable, especially as it cools down outside, your body likes to make excuses to keep you from venturing outside of the covers. So, as your bladder screams, your head pounds and your stomach wretches, it seems perfectly logical that you should wait another 15 minutes because the pillow feels good right there.
So, as I said, it is getting chilly. Not Toronto chilly, that's only for lunatics (snow!?!)...I won't even mention those who live in Ottawa. We're talking Atlanta chilly. A bit brisk, towards freezing at night, a breeze or two. Cool enough to realize that I need a critical addition to my cancer-wardrobe...a hat.
To most guys, this is a simple feat, you walk into your closet, pull out a salt/sweat stained nasty rag, place it on your freshly schorn noggin, and off you go. Doesn't work that way for me, since I was a child, no hat wished to be placed on my head. It would promptly bring ridicule and laughter as clearly a hat does not belong on my head. I've settled in recent years to the hybrid, green-hat option of the visor, I still force my head to feel the agony of global warming (those of you who know me, know the context of that statement...), while still looking delightfully good in the sun.
Anyways...for those that may have failed physics, have never seen a visor, or were otherwise unable to draw inside the lines during pre-school, the visor does not offer baldness-supportive warmth during such months. It behaves more like a chimney to freeze the core of my body capriciously with every breeze.
A toque/stocking cap seems to be the item of choice.
***Note***
This is where I clearly become a foreigner around here. Somehow the southerners have twisted the English language to accept TOBOGGAN as an acceptable substitute for toque/stocking cap. And as with all Southerners, there is no arguing, it is just the way it is. You point out what a toboggan really is, and that it would be a tad uncomfortable, even unfortunate, if one had to wear one as a hat...and their response is "I don't know what you're talking about, it is a stocking hat". "No" you say, "a stocking hat is a stocking hat, a toque is a stocking hat, a TOBOGGAN is a damned sled that kids use to ride down a mountain"
***End Note***
So, off to the store. With my supportive wife (from the "lay off the sauce" fame). We started with the mall, must be something classy, not too high-school oriented that I could pick up there, right? No dice. I tried on every damned shape and size of hat available...beanie to cowboy, dunce to bowler, toque to toboggan...all left my wife with the same glowing laugh, "you look like a mushroom!" To which she'd pat the top of my head and look for the next costume for my dress-up game. Upon the next try she might add "yeah, if you had hair, this one might look good". Damned if she weren't so cute I'd have tackled her right there in the store.
After a trip to REI, and what appears to be a military surplus hat, I now can be sheltered from the artic blasts storming Atlanta. However, supportive as my new hat may be, I'm unsure my crushed self-image will ever recover from the mushroom-ridicule of 2008.
Friday, October 24, 2008
Week 2 almost in the bag
Just off to the races this morning. We tapped up my left arm this time, the nurse let me know the track-marks on my right arm were beginning to look a bit "gross".
Back to the left arm where I got all the pain last time from the potassium. Turns out I messed up that vein quite a bit, feels hard as a rock from the round that burned me up over there. We'll see how things go today, may have to switch back to the right arm again if it starts to get worked up on me.
The fatigue is definitely setting in earlier and harder this time around, slept almost all day yesterday. It is a strange sleep...when you wake up you're fine to do whatever, close your eyes for a minute, and you're asleep for 4 hours (or until your bladder wakes you up).
My eyes are getting a bit more difficult to work with again--focusing on the screen to type this is a bit of work, suspect it'll get harder through the next couple days. Could mean you'll have to search out other venues of entertainment, perhaps even catch up on this "election" that's going on.
The sickness is similar to last time, not too bad. Just an ever present "din" of sickness, makes you want to avoid food and drink, but for a few minutes a day. I'm not really nauseated too much, but after eating I never feel like I'm actually digesting the food...just seems to sit there with me for the next few hours. Nice. Learned to sit up & sleep post-meal.
Tomorrow I'll be off to get my Neulasta shot to keep the WBCs up for the next treatment. That should mix the bone pain with the fatigue, an enticing mix indeed. So it goes.
So, about half the journey has elapsed, things still on track. Only casualties are a couple veins and a lot of hair. Neither ever made me look too good anyway.
Back to the left arm where I got all the pain last time from the potassium. Turns out I messed up that vein quite a bit, feels hard as a rock from the round that burned me up over there. We'll see how things go today, may have to switch back to the right arm again if it starts to get worked up on me.
The fatigue is definitely setting in earlier and harder this time around, slept almost all day yesterday. It is a strange sleep...when you wake up you're fine to do whatever, close your eyes for a minute, and you're asleep for 4 hours (or until your bladder wakes you up).
My eyes are getting a bit more difficult to work with again--focusing on the screen to type this is a bit of work, suspect it'll get harder through the next couple days. Could mean you'll have to search out other venues of entertainment, perhaps even catch up on this "election" that's going on.
The sickness is similar to last time, not too bad. Just an ever present "din" of sickness, makes you want to avoid food and drink, but for a few minutes a day. I'm not really nauseated too much, but after eating I never feel like I'm actually digesting the food...just seems to sit there with me for the next few hours. Nice. Learned to sit up & sleep post-meal.
Tomorrow I'll be off to get my Neulasta shot to keep the WBCs up for the next treatment. That should mix the bone pain with the fatigue, an enticing mix indeed. So it goes.
So, about half the journey has elapsed, things still on track. Only casualties are a couple veins and a lot of hair. Neither ever made me look too good anyway.
Wednesday, October 22, 2008
Queasy Bake Oven
It's not easy, being queasy. At least today is better than sitting beside the snorer from yesterday, you know the kind of snoring that is impossible to ignore...deep, startling, goes silent for a minute just to throw you a new curve on human sound.
So, I'll enjoy my silence, if only disturbed by nausea that doesn't seem to want to quit today. Yuck. Bananas are a friendly food in this situation, my sandwich has very much lost its appeal. Bread seems like a horrific food. I see smoothies in my future.
Went for a second round of head shaving this morning, as the stubble began to come out in the shower from last round. Weird sensation, the razor didn't drag as it does normally...more seemed to snag the hair and pull it from the root...no resistance. Same with the stragglers on my beard. I had the facial hair growth of a 14 yr old boy. While cool, I decided to get rid of it to prevent the hoardes of teenage girls from being impressed.
Generally, my body seems to be reacting about a day earlier than how I felt last time. The previous round on Tuesday I was still up for a long walk. Not so much last night, was fading fast by 9 and was barely awake by 10pm. Didn't feel all that well last night either. Normally my "morning sickness" would pass by the time I was out of the shower, but now it is lingering with me through the day too.
Still, all things considered, I'm at about a 2 on the scale of 10 for side-effects. So I haven't room to complain. And without "snorey" sitting beside me, my blood pressure is probably a lot better today as well.
So, I'll enjoy my silence, if only disturbed by nausea that doesn't seem to want to quit today. Yuck. Bananas are a friendly food in this situation, my sandwich has very much lost its appeal. Bread seems like a horrific food. I see smoothies in my future.
Went for a second round of head shaving this morning, as the stubble began to come out in the shower from last round. Weird sensation, the razor didn't drag as it does normally...more seemed to snag the hair and pull it from the root...no resistance. Same with the stragglers on my beard. I had the facial hair growth of a 14 yr old boy. While cool, I decided to get rid of it to prevent the hoardes of teenage girls from being impressed.
Generally, my body seems to be reacting about a day earlier than how I felt last time. The previous round on Tuesday I was still up for a long walk. Not so much last night, was fading fast by 9 and was barely awake by 10pm. Didn't feel all that well last night either. Normally my "morning sickness" would pass by the time I was out of the shower, but now it is lingering with me through the day too.
Still, all things considered, I'm at about a 2 on the scale of 10 for side-effects. So I haven't room to complain. And without "snorey" sitting beside me, my blood pressure is probably a lot better today as well.
Monday, October 20, 2008
Wonder Drug
My WBCs were literally off the charts today, proving that people should buy stock in Amgen. With the new set of WBCs, I have discerned that I am now functionally invincible, and have taken note of some interesting statistics since this morning, the polls will close at 7 pm ET.
- At least 9 out of 10 cars have not hit me today, proving that my invincibility extends to my vehicle. Melissa getting in the garage is another story. I'll refresh this statistic once she arrives home. :D
- Almost 100% of the other patients in the infusion ward didn't get attacked by wild animals while I was in the room. Therefore, my invincibility may be transferable to other humans as well. I'm unsure of its lasting effects, so don't get cocky.
- 9 out of 10 homes have not been torn town by large equipment in my neighborhood. The one that did had it coming. I never much liked that house anyway. Therefore, my invincibility can be withdrawn, if I didn't like something in the first place.
I will be taking dares for the rest of the day in return for compensation. I've already accepted one from my brother for $100 to shave my head. Done and done. Pay up sucker.
Day 1, session 2, in the books.
Thursday, October 16, 2008
Caged Fighter
My WBCs slid much lower over the last few days, creating a new dynamic for existence. While it doesn't appear the weakened condition will lead to a delay in my next round on Monday, it does create yet a new dynamic. I suppose I needn't be in fear of losing my anonymity for the time being.
The instructions I received today are virtually identical to those fearing biological warfare. Now fighting the everpresent enemy, the one that envelops the world so completely.
Don't touch.
Don't eat.
Don't breathe.
It's best you avoid people.
If you must see them, be a masked man, avert your eyes and bury your head.
Now to the magic shot, the potion that will keep us from amputating your finger from a paper cut, from hospitalizing you for a sneeze. What an amazing world; fighting an invisible enemy with a weapon that can't be seen.
So, armed with my weaponry, I will sit and fight an omnipresent invisible enemy, without flinching. Waging a battle for my survival without looking at my enemy, guided solely by the actions of the unseen. And you still think I'm talking about the drugs.
The foolish are easily misled into trusting the wrong savior.
Whomever says this world isn't full of faith just hasn't looked for the invisible.
The instructions I received today are virtually identical to those fearing biological warfare. Now fighting the everpresent enemy, the one that envelops the world so completely.
Don't touch.
Don't eat.
Don't breathe.
It's best you avoid people.
If you must see them, be a masked man, avert your eyes and bury your head.
Now to the magic shot, the potion that will keep us from amputating your finger from a paper cut, from hospitalizing you for a sneeze. What an amazing world; fighting an invisible enemy with a weapon that can't be seen.
So, armed with my weaponry, I will sit and fight an omnipresent invisible enemy, without flinching. Waging a battle for my survival without looking at my enemy, guided solely by the actions of the unseen. And you still think I'm talking about the drugs.
The foolish are easily misled into trusting the wrong savior.
Whomever says this world isn't full of faith just hasn't looked for the invisible.
Wednesday, October 15, 2008
Hair Today, Gone Tomorrow
Cancer is a funny thing...it pretty much defines you for some portion of your life and becomes an inescapable web of experiences that all lie within the broad umbrella of "cancer".
Today my hair is falling out, I'll give it the gentle push and just shave it all off before creating too much (more) of a mess on my pillow. It is an interesting step as it removes the last shroud of anonymity, and normalcy, from the experience.
The last 35 days have been almost consumed by cancer. You wake up in the morning with the realization, again, that you still have cancer. You go to bed at night with the same thoughts. The bruising on your arms from chemo, while not apparent to others, reminds you as you turn over at night that you are still there. You get a lot more phone calls. Emails are a continuous reminder of your support group. Smatterings of get well cards, even from folks you've never met, greet you in the mailbox each day. People have tears in their eyes more frequently. As a patient you rarely have a discussion that doesn't start or end related to your health. You rarely have a conversation that doesn't include the word cancer, or chemo. You're no longer a husband, son, brother, friend, co-worker. All of them now carry an asterisk. That asterisk denotes, larger than your relationship definition, that you have cancer. Indeed, it is the first thing people see. Not incorrectly, not badly, not upsetting. Different. It is what it is.
Cancer Is Omnipresent...save for anonymity. There was still the fleeting moment or two, when you'd walk into a store or restaurant, and you were still a regular person. The people around you don't know you, and still shuffle through daily existence without a second glance in your direction. For brief moments you can wear the cloak of normalcy, people smile at you without tears in their eyes.
Today I suppose that goes away too. Just like wearing the IV for a day defined that I was still a cancer patient when I got home, the too-white bald head will give away my asterisk no matter where I go. The hair is the least important thing, the complete loss of normalcy is a different game.
When I was taking martial arts years ago, I had my head shaved pretty close. Prior to beginning some more "hands on" fights, our master reviewed our equipment and gave us pointers so we'd be prepared for the eventuality of injury. When he spoke with me he said he liked my haircut.
When I asked him why, he smiled and said "when you're in a fight, you don't give your enemy anything to hold onto."
Round two is about to begin.
Today my hair is falling out, I'll give it the gentle push and just shave it all off before creating too much (more) of a mess on my pillow. It is an interesting step as it removes the last shroud of anonymity, and normalcy, from the experience.
The last 35 days have been almost consumed by cancer. You wake up in the morning with the realization, again, that you still have cancer. You go to bed at night with the same thoughts. The bruising on your arms from chemo, while not apparent to others, reminds you as you turn over at night that you are still there. You get a lot more phone calls. Emails are a continuous reminder of your support group. Smatterings of get well cards, even from folks you've never met, greet you in the mailbox each day. People have tears in their eyes more frequently. As a patient you rarely have a discussion that doesn't start or end related to your health. You rarely have a conversation that doesn't include the word cancer, or chemo. You're no longer a husband, son, brother, friend, co-worker. All of them now carry an asterisk. That asterisk denotes, larger than your relationship definition, that you have cancer. Indeed, it is the first thing people see. Not incorrectly, not badly, not upsetting. Different. It is what it is.
Cancer Is Omnipresent...save for anonymity. There was still the fleeting moment or two, when you'd walk into a store or restaurant, and you were still a regular person. The people around you don't know you, and still shuffle through daily existence without a second glance in your direction. For brief moments you can wear the cloak of normalcy, people smile at you without tears in their eyes.
Today I suppose that goes away too. Just like wearing the IV for a day defined that I was still a cancer patient when I got home, the too-white bald head will give away my asterisk no matter where I go. The hair is the least important thing, the complete loss of normalcy is a different game.
When I was taking martial arts years ago, I had my head shaved pretty close. Prior to beginning some more "hands on" fights, our master reviewed our equipment and gave us pointers so we'd be prepared for the eventuality of injury. When he spoke with me he said he liked my haircut.
When I asked him why, he smiled and said "when you're in a fight, you don't give your enemy anything to hold onto."
Round two is about to begin.
Monday, October 13, 2008
Any one got extra white blood cells?
Well, crap. My WBC (white blood cell) count is pretty low, so I won't be able to do my regular rounds scrubbing toilets at the walk in clinics.
I'm too low to do treatment now, but am scheduled to go back later this week to see if my counts come up to normal (low) levels. If not, I may have to either take some shots to increase my WBC production (thank you Amgen!) or potentially delay treatment...a pretty horrible option from my point of view. So...we know what we're praying for this week.
Just reviewed the financials so far, for those of you that are interested. So far >$35k billed to insurance company, $29k of which was reviewed, insurance company is paying just over $8k, we're out about $1k in various fees/copays, etc so far.
The startling number is the difference between billed & paid, $20k (once you remove what we've paid). I'm not exactly sure how the whole system works, but I'm surprised nonetheless at the dramatic difference between what a hospital bills for service and what the insurance company will actually pay for that service. This is where a known issue that a lot of folks have duped has come in, where the hospital bills the patient for the balance (which is illegal)--and if (they have not) my hospital did it, we'd receive an invoice for $20k in unpaid balances. Not a risk in our case, but I'm not surprised about the how/why it happens. The surgery is the largest discrepancy, by far--only about 15% paid by the insurance company. In my opinion, for all that was done that day, the number paid out is exceedingly low for the number of specialists involved. Remarkably low. Hospital losing money kind-of-low.
Each day of chemo is billed at just over $2k, insurance paid is just over $1k, and out of pocket is $25. That doesn't include the secondary/prophylactic drugs (anti-nausea, etc.) that I take at home.
That being said, three things from this:
1. Insurance companies apparently are doing a good job negotiating rates with docs. I'm surprised that docs are willing to participate at this % of their fee schedule.
2. I'm delighted by our insurance coverage. The largest expenses have been meds and copays, both a deal considering the nature of the disease. Financially, we hardly have cause to bat an eye...especially when I compare it to our investment performance.
3. If you don't have insurance, you have a hell of a lot of room to bargain. The first question you should ask is what would a large insurance company pay for this same procedure, that alone could get you an 85% discount from "list"! Then go from there on the negotiation...
Back to growing some more WBCs.
I'm too low to do treatment now, but am scheduled to go back later this week to see if my counts come up to normal (low) levels. If not, I may have to either take some shots to increase my WBC production (thank you Amgen!) or potentially delay treatment...a pretty horrible option from my point of view. So...we know what we're praying for this week.
Just reviewed the financials so far, for those of you that are interested. So far >$35k billed to insurance company, $29k of which was reviewed, insurance company is paying just over $8k, we're out about $1k in various fees/copays, etc so far.
The startling number is the difference between billed & paid, $20k (once you remove what we've paid). I'm not exactly sure how the whole system works, but I'm surprised nonetheless at the dramatic difference between what a hospital bills for service and what the insurance company will actually pay for that service. This is where a known issue that a lot of folks have duped has come in, where the hospital bills the patient for the balance (which is illegal)--and if (they have not) my hospital did it, we'd receive an invoice for $20k in unpaid balances. Not a risk in our case, but I'm not surprised about the how/why it happens. The surgery is the largest discrepancy, by far--only about 15% paid by the insurance company. In my opinion, for all that was done that day, the number paid out is exceedingly low for the number of specialists involved. Remarkably low. Hospital losing money kind-of-low.
Each day of chemo is billed at just over $2k, insurance paid is just over $1k, and out of pocket is $25. That doesn't include the secondary/prophylactic drugs (anti-nausea, etc.) that I take at home.
That being said, three things from this:
1. Insurance companies apparently are doing a good job negotiating rates with docs. I'm surprised that docs are willing to participate at this % of their fee schedule.
2. I'm delighted by our insurance coverage. The largest expenses have been meds and copays, both a deal considering the nature of the disease. Financially, we hardly have cause to bat an eye...especially when I compare it to our investment performance.
3. If you don't have insurance, you have a hell of a lot of room to bargain. The first question you should ask is what would a large insurance company pay for this same procedure, that alone could get you an 85% discount from "list"! Then go from there on the negotiation...
Back to growing some more WBCs.
Wednesday, October 8, 2008
Unrelated Note
I think we're done with home improvements. Now that Lowe's considers us a commercial customer, I believe we've done enough. On a related note, and outside of the commercial customer letter I got from Lowe's today, I'm feeling pretty durn good.
I asked if we could move the treatments up and/or get more aggressive. Apparently Dr. D thinks that is "unsafe". Me? I think cancer is unsafe. Not sure who should win the argument as both could kill me. Conundrum.
Itching to push the fight forward...my inspiration for the day: David Farragut
I asked if we could move the treatments up and/or get more aggressive. Apparently Dr. D thinks that is "unsafe". Me? I think cancer is unsafe. Not sure who should win the argument as both could kill me. Conundrum.
Itching to push the fight forward...my inspiration for the day: David Farragut
Monday, October 6, 2008
Coming out of Hibernation
Well, the eyes are still a bit shifty. The weekend was a complete write-off, pretty hard to do much more than wander for a few moments at a time across a room and find a new comfortable spot.
In the midst of absolute boredom & fatigue, your sub-conscious companion tends to pipe-up a bit more, even without an invitation. Consciousness will wake you by pointing out the obvious, and by placing maddeningly simple orders into your head. "Take the cover off, you're too hot." "You're hungry." "You're sick." Too bad I didn't have the ability to respond coherently...I'd like to think I'd have put him in his place.
Fatigue, coupled with the inability to read or use my eyes consistently, bore a bit more on my sanity. It was too difficult to check email, read and *gasp* watch football. The eyes are still shaky, but are recovering this afternoon...hopefully I'll be up to full form tomorrow.
Just got back from the docs where they took blood levels. It was about all I could do to make it in & out of the place...feels like I'm 90 years old, and God knows have I have to visit the bathroom as consistently. Somehow (great news!) all my blood levels are at or above normal--this is great for treatment.
Though now my wife holds onto the paper claiming I'm a faker because it clinically says I'm just fine. In fact, while I struggled to stand in the elevator full of various other docs, nurses and patients--while I'm grasping onto the wall trying to prevent full-collapse, my wife not-so-quietly utters "you need to lay off the sauce". Nice. That's why I married her. At least that's what I tell myself now.
This week should be more recovery, so hopefully I'll be back in full form shortly...assuming these pesky eyes begin working again.
In the midst of absolute boredom & fatigue, your sub-conscious companion tends to pipe-up a bit more, even without an invitation. Consciousness will wake you by pointing out the obvious, and by placing maddeningly simple orders into your head. "Take the cover off, you're too hot." "You're hungry." "You're sick." Too bad I didn't have the ability to respond coherently...I'd like to think I'd have put him in his place.
Fatigue, coupled with the inability to read or use my eyes consistently, bore a bit more on my sanity. It was too difficult to check email, read and *gasp* watch football. The eyes are still shaky, but are recovering this afternoon...hopefully I'll be up to full form tomorrow.
Just got back from the docs where they took blood levels. It was about all I could do to make it in & out of the place...feels like I'm 90 years old, and God knows have I have to visit the bathroom as consistently. Somehow (great news!) all my blood levels are at or above normal--this is great for treatment.
Though now my wife holds onto the paper claiming I'm a faker because it clinically says I'm just fine. In fact, while I struggled to stand in the elevator full of various other docs, nurses and patients--while I'm grasping onto the wall trying to prevent full-collapse, my wife not-so-quietly utters "you need to lay off the sauce". Nice. That's why I married her. At least that's what I tell myself now.
This week should be more recovery, so hopefully I'll be back in full form shortly...assuming these pesky eyes begin working again.
Friday, October 3, 2008
Day 5 - Failed Engineering
Well, this morning I learned why both my wife & I are in marketing and not engineering. I decided last night to keep the IV port in for an extra day to ease up on the procedures this morning. Instructions were simple enough: keep it dry. Before showering, just wrap up your arm in saran wrap, seal up the edges with this medical tape and you'll be good to go.
About 90 seconds into my shower I'd succeeding in creating a foot-long water sausage around my arm, completely bathing my IV in warm showery goodness. The fantastic part of it was though I could somehow let all the water in without a fight, there was seemingly no way to let it out. So...on with the shower, water sausage and all.
The fatigue is a bit more heavy over the last 24 hrs. Once I got back last night...after a LONG day here (past 5pm...more than most of you schmucks put in at work, and no, I didn't take a lunch break either) I slept basically from the time I got home till this morning. Two learnings:
1. Even if you sleep all evening while on chemo, you won't have too many problems getting through the night too...I thought I'd be up all night, other than my 40 trips to the men's room, no disturbances!
2. Don't eat chick-fil-a while lying down and expect your body to do a good job digesting it.
These next two days are apparently the lowest of the treatment as my white blood cell count plummets into the nether world...no visitors, apparently the only focus I need is to make sure I'm sitting up while eating. Back to basics.
So...almost 25% of the way through the treatments. I'm sure I haven't hit the worst of it yet, but this is a far cry from being impossible to get through. Just another walk in the park. Hopefully the weather holds up this weekend and I can relax in that hammock my brother got me...
About 90 seconds into my shower I'd succeeding in creating a foot-long water sausage around my arm, completely bathing my IV in warm showery goodness. The fantastic part of it was though I could somehow let all the water in without a fight, there was seemingly no way to let it out. So...on with the shower, water sausage and all.
The fatigue is a bit more heavy over the last 24 hrs. Once I got back last night...after a LONG day here (past 5pm...more than most of you schmucks put in at work, and no, I didn't take a lunch break either) I slept basically from the time I got home till this morning. Two learnings:
1. Even if you sleep all evening while on chemo, you won't have too many problems getting through the night too...I thought I'd be up all night, other than my 40 trips to the men's room, no disturbances!
2. Don't eat chick-fil-a while lying down and expect your body to do a good job digesting it.
These next two days are apparently the lowest of the treatment as my white blood cell count plummets into the nether world...no visitors, apparently the only focus I need is to make sure I'm sitting up while eating. Back to basics.
So...almost 25% of the way through the treatments. I'm sure I haven't hit the worst of it yet, but this is a far cry from being impossible to get through. Just another walk in the park. Hopefully the weather holds up this weekend and I can relax in that hammock my brother got me...
Thursday, October 2, 2008
Day 4 - Setting in a bit
Well, things definitely started to settle in yesterday. By the time I got home I was pretty wiped out and just stayed buttoned to the couch most of the night before heading to bed early. Food has started to turn on me a bit...everything seems like it was mixed from a powder (including water). Not ideal, but not the worst thing in the world either.
I got a good night's sleep, but woke up with the first tentacles of nausea tugging at my gut. Again, nothing big, but unfortunate nonetheless. By the time I got up and about, I started to feel fine again.
I'm definitely a bit more hazy this morning. Fingers aren't hitting all the right keys on the keyboard...I'm getting used to hitting that backspace key a bit more frequently than normal. All vitals are good, but the veins are getting a bit tired from all the punctures & injections this week, so the IV took a little while this morning to cram in there...fun, fun.
So...the first taste is beginning to settle in. Nothing that can't be handled though.
I got a good night's sleep, but woke up with the first tentacles of nausea tugging at my gut. Again, nothing big, but unfortunate nonetheless. By the time I got up and about, I started to feel fine again.
I'm definitely a bit more hazy this morning. Fingers aren't hitting all the right keys on the keyboard...I'm getting used to hitting that backspace key a bit more frequently than normal. All vitals are good, but the veins are getting a bit tired from all the punctures & injections this week, so the IV took a little while this morning to cram in there...fun, fun.
So...the first taste is beginning to settle in. Nothing that can't be handled though.
Wednesday, October 1, 2008
Start of Day 3
Things are still pretty darned good. Still no signs of nausea, but it was a bit more difficult to sleep last night..."travel proud" in Dyer-language. Went again for a walk last night, and had another "early" evening...lights out on the couch around 10, in bed shortly thereafter.
A bit of a haze is setting in, but not anymore than you'd expect from a difficult night's sleep. I've been far worse with just the feeling of a cold coming on...so no registered complaints.
I'm still working through the day and can't bend my head around wasting around watching TV & movies just yet. It is actually easier to work without the co-worker distraction. Other than the periodic nurse plugging something into me, I can crank through a bunch of stuff with little interruption. So...back to work.
A bit of a haze is setting in, but not anymore than you'd expect from a difficult night's sleep. I've been far worse with just the feeling of a cold coming on...so no registered complaints.
I'm still working through the day and can't bend my head around wasting around watching TV & movies just yet. It is actually easier to work without the co-worker distraction. Other than the periodic nurse plugging something into me, I can crank through a bunch of stuff with little interruption. So...back to work.
Tuesday, September 30, 2008
Day 2.5 - Feeling Like Rock Star
It is pretty odd to think that I have something actively trying to kill me running around my body...and more than that, that I'm actively pumping poison into my veins on a daily basis to kill the stuff that's trying to kill me...along with some collateral damage in the form of my hair, skin, nails and (yikes!) kidneys and liver.
Especially odd because I don't feel much different from a month ago. Except for the scar and the missing piece of my former self.
Just got home after working all day plugged into chemo. It feels pretty good to keep stuff moving along at work and especially with the team I've got, they're a bunch of good young people, I'm pretty impressed by how they are all stepping up. I mowed the backyard...the new grass was about 6" high, it looked like a wheat field out there.
So, no nausea, no hair loss (not expected at this point), no real fatigue. Just another regular day. Feeling like as much of a rock star as I can.
Especially odd because I don't feel much different from a month ago. Except for the scar and the missing piece of my former self.
Just got home after working all day plugged into chemo. It feels pretty good to keep stuff moving along at work and especially with the team I've got, they're a bunch of good young people, I'm pretty impressed by how they are all stepping up. I mowed the backyard...the new grass was about 6" high, it looked like a wheat field out there.
So, no nausea, no hair loss (not expected at this point), no real fatigue. Just another regular day. Feeling like as much of a rock star as I can.
Day 2 Getting Started
Had a great walk and a big meal last night...not even a lick of nausea, which is a damned good sign. It was an early night, probably more due to the first long walk since surgery...I don't think the drugs would've caught up with me that quick, but who's to know? Got up for about an hour or more last night, I think it was mostly nerves. It is amazing how this stuff will consume your mind in any free moment.
Key learning: Distractions = sleep. Focus on disease = sleeplessness.
Anyway, should be a shorter day today. Took the Emend via capsule and got started much earlier. And so the slaughter continues...
Key learning: Distractions = sleep. Focus on disease = sleeplessness.
Anyway, should be a shorter day today. Took the Emend via capsule and got started much earlier. And so the slaughter continues...
Monday, September 29, 2008
End of Day One - The Drug Haul
Well, that was pretty durned easy. The day took a little longer than expected...about 7.5hrs total. We had to go a bit slower on the Cisplatin because it was burning my arm, but no big deal.
We got the drug haul today:
Emend, 2 capsules. one for day 2 and 3. I got it via IV for day one. Treats the nausea. Expensive drug...apparently $300 retail for 2 pills, $60 copay. Yikes. If it works, I'd pay more than that. Go pharma companies...you rock. No matter what combo of marketing/R&D/lobbying they do, as long as they can bring these magical concoctions to market to save my life...God Bless 'em.
Famciclovir, a bunch, one a day. A pre-emptive strike to prevent the canker sores that have plagued me most of my life--and that I'll be especially prone to over the next 83.5 days.
Lorazepam, a bunch, if needed. Anti-anxiety drug, there for nausea though it suspiciously lists it as a side effect. Hopefully I can avoid these, apparently they're good at putting you to sleep though.
Prochlorperazine, a bunch, as needed. For nausea should it strike.
The glass is now 1/84th full.
We got the drug haul today:
Emend, 2 capsules. one for day 2 and 3. I got it via IV for day one. Treats the nausea. Expensive drug...apparently $300 retail for 2 pills, $60 copay. Yikes. If it works, I'd pay more than that. Go pharma companies...you rock. No matter what combo of marketing/R&D/lobbying they do, as long as they can bring these magical concoctions to market to save my life...God Bless 'em.
Famciclovir, a bunch, one a day. A pre-emptive strike to prevent the canker sores that have plagued me most of my life--and that I'll be especially prone to over the next 83.5 days.
Lorazepam, a bunch, if needed. Anti-anxiety drug, there for nausea though it suspiciously lists it as a side effect. Hopefully I can avoid these, apparently they're good at putting you to sleep though.
Prochlorperazine, a bunch, as needed. For nausea should it strike.
The glass is now 1/84th full.
Day 1 of 84 Chemo Journal
Pretty uneventful so far, got in around 8:30 to sign in, pay our copay and wait to get started. I'm getting an arm IV vs. the port, so have to get that "installed" each day--not bad at all, by this point they don't even warn you about needles anymore, it has become standard practice.
So...paid and wating by 9ish.
Bloodwork at 9:15.
Cleared by doc for chemo by 9:30.
IV inserted about 9:45.
Got comfy & waited for nurse & med instructions...
Talked with nurse, reviewed routine and all drugs/drips.
Plugged into saline for 2 hrs at about 10:30.
Started pre-meds for 1 hr (3 different bags of goodies) at 12:20ish.
Started chemo at 1:20 ish. And so the slaughter begins.
I've got a comfortable chair, and Melissa is with me. TVs here and lots of other folks. Pretty surprising how many people are here...have to be 20 or so. A few distractions are readily available with the TV/DVD/VCR combo, a library and my iPod.
Been on a saline drip for 2 hrs to hydrate, on my premeds now for nausea and the diuretic to keep the flow going for my kidneys. Nothing to worry about so far beyond the trips to the bathroom with all these damned tubes...six bags in total, and what looks like a cell phone from 1978 controlling the show. Carting this thing in & out of a bathroom is crazy...
So...paid and wating by 9ish.
Bloodwork at 9:15.
Cleared by doc for chemo by 9:30.
IV inserted about 9:45.
Got comfy & waited for nurse & med instructions...
Talked with nurse, reviewed routine and all drugs/drips.
Plugged into saline for 2 hrs at about 10:30.
Started pre-meds for 1 hr (3 different bags of goodies) at 12:20ish.
Started chemo at 1:20 ish. And so the slaughter begins.
I've got a comfortable chair, and Melissa is with me. TVs here and lots of other folks. Pretty surprising how many people are here...have to be 20 or so. A few distractions are readily available with the TV/DVD/VCR combo, a library and my iPod.
Been on a saline drip for 2 hrs to hydrate, on my premeds now for nausea and the diuretic to keep the flow going for my kidneys. Nothing to worry about so far beyond the trips to the bathroom with all these damned tubes...six bags in total, and what looks like a cell phone from 1978 controlling the show. Carting this thing in & out of a bathroom is crazy...
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