Few things in this life have been harder than telling my mother that I am going to die.
That was the message that Tami and I delivered to my parents today after another abdominal drain and extensive consultation with my doctor. Things aren't going my way in the cancer department lately. We learned this week that my time in the physical realm is shorter than we thought. Potentially much shorter. Needless to say, it's been a rough week for both of us.
Last week I had 3 liters of fluid drained from my abdomen. This fluid is called ascites. Normally it is caused by a failing liver. But sometimes it can be a sign of something worse. Well, it doesn't take a rocket scientist to look at my liver numbers and functions and make the assumption that my particular ascites was being brought on by poor liver function. So we started treating it from that perspective. We also had a routine sample sent to pathology to look for anything more nefarious.
On Tuesday we were given the news that my ascites was malignant. This isn't good news. In fact, it's about the worst news we could've gotten. If you look up malignant ascites you see words like "dire" and "extremely poor" when it comes to prognosis and outlook. When you look at the numbers, the news gets even worse (even though I don't put much stock in numbers...) with a mean survival rate of about 4 months. Unfortunately it doesn't react well to chemo and well...it's pretty damn nasty.
Options? Not many. We are looking into a new chemo drug that would give us a possible chance with the ascites, but is much less effective on my primary cancer. Oh yeah...and insurance has an annoying issue of denying it's coverage. I've applied for financial assistance from the drug company but I have little chance of being approved. So, for the low low price of $12,000 every two weeks I could roll the dice. We're hoping that the insurance just covers it and I don't have to make that decision.
Another option is an interesting one...although a bit terrifying. It would involve 2 different surgeries conducted back to back (10 or more hours on the operating table). Interestingly enough, this might be the first time both surgeries are conducted at the same time anywhere in the world.
The first is a relatively low risk surgery that would be focused on the ascites. Basically, I would be split open right down the middle and the surgeons would try to find every bit of tumor cell in my abdomen (none in the liver, just the abdominal cavity). I would then be "filled" with hot water and a drug mixture that would be aimed at slowing down the ascites or making it go away for a while. The second surgery would involve installing an Hepatic Arterial Infusion (HAI) pump. This is basically a super concentrated chemo treatment that lasts 2 weeks at a time and is focused on the liver specifically. The concern here is that my liver...well...let's face it; it's not in the best shape right now. The surgeon is currently very concerned about the idea of this surgery in my condition. Unlike the first part, this part is high risk, with a possibility of me a) not making it off the table or b) dying within 30 days of the surgery due to liver failure or complications.
Kind of a tough choice...don't do it and look at planning my going away party in a few months...or (assuming that the surgeon agrees to do it) go for broke and potentially depart even sooner with no guarantee of prolonged lifespan. We are looking at a 3rd option though. When we meet with the surgeon next week we are going to ask if there is any benefit to just doing the first surgery to give a little more time to fight the ascites. The issue with that approach is that it is a very invasive surgery and the recovery time will be extensive. All the while I will have to suspend chemo. That's the benefit of combining both surgeries. The chemo to my liver would start almost immediately because it's already inserted in my abdomen.
Of course there is always the option to simply stop treatment and spend the last few months of my life just managing pain and symptoms while I let nature take it's course. I'm not ready to make that call right now. I still have a little fight left in me.
I know many of you will have questions, or want to visit. Right now, Tami and I need some time to process everything. If you call and we don't answer, we may be at an appointment or we may be just not answering for a bit. Just know that we want to talk to you but may have to call you back. As far as visits go, just be prepared to have plans change. So many things are up in the air right now that I can't even plan the next 48 hours with any certainty.
You will also see me making light of this situation, which may seem morbid and inappropriate...but it's how I cope and I intend to smile as much as humanly possible for the next few months. I would ask you to smile as well. Nothing helps you feel better than a smile sometimes. If you need to find a reason to smile just remember how full and happy all you have helped make my life. That's what helps me smile.
I'm not stopping the blog. I want to keep all of you informed and it really helps me deal with all of this. It's also going to be a place where I can ruminate on good times and bad along with providing status updates.
After you read this I want you to find something to read/watch/otherwise experience that makes you laugh for at least five minutes straight. And then show it to someone else. :)
I love you all.
Jake
Showing posts with label Commentary. Show all posts
Showing posts with label Commentary. Show all posts
Thursday, April 24, 2014
Friday, March 7, 2014
A big scare, new motivation and mobility devices
Today is my eighth treatment and I can tell you, I didn't want to come this morning. The particular drug that I start with makes me feel horrible all day. By bedtime I'm more than ready for the day to be over and already dreading the next two days. Thankfully the weekend is a bit better now that I have a cocktail of chemicals to stabilize things. I've already pulled a couple of movies for the weekend. We'll see if I get to them. Top Gun, Terminal and Office Space. Tami also has the final part of the Twilight series coming....
So today was another day that reinforced the concept of expecting the unexpected. 2 weeks ago I got switched to a different drug in my chemo regimen. 2 weeks ago I had no reaction to the drug. But today I had a very real and scary allergic reaction during my treatment. This is always a concern with a new drug and today it was realized. 30 minutes into a 90 minute infusion I started to feel sick and my entire head turned lobster red and started radiating down my neck. This all happened in a span of 3 to 5 minutes. At that point Tami called a nurse and a team of amazing women sprang into action. If you read my FB post, you'll know that the offending drug was cut off and I was immediately pumped full of steroids and Benadryl. After an hour of monitoring and stabilizing, it was decided to restart the drug infusion at the same dose but half the rate. That seemed to do the trick and after another 90 minutes, started my last drug. It's very important to note that I was just minutes away from a rapid response team and a crash cart, but thanks to Tami recognizing the need to get the nurse and the team's fast and focused response, that didn't happen. I owe a lot to these wonderful women. After 8 full hours at the hospital we finally got my fanny pack and went home. It was a long day to say the least. But I'm better now and ready to move on with my weekend.
But enough drama...I had several appointments with some very smart people this week that has given me a renewed sense of motivation.
On Tuesday I had an appointment with an exercise physiologist who gave me a band workout that won't eat up too many calories and will hopefully remind my body that I actually need those muscles and it's not very appropriate to eat them. He also turned me on to a new start-up called Green Growlers. Tami and I had been looking for a way to start Green Smoothies but were a bit intimidated. This company delivers growlers full of organic green smoothies to your door once a week. This is going to be a great way to get introduced to the concept and I'm really excited about it.
On Thursday I had an appointment with a registered dietician who gave me clear and concise direction on a meal strategy. I'm going to increase my milk consumption, start putting protein powder in things that I never thought possible and eating more veg. I'm excited. I am also motivated like mad. I ordered a new set of bands, a different kind of sugar (dextrose vs sucrose or fructose) that is going to be easier on my liver and we're going to start with green smoothies this week.
Another motivating factor is today's CEA number. 106.1 That's a wonderful number. As this chart illustrates, the trend that began with my last lab result continues to head in the right direction. A drop of around 34 points! I'm really interested to see what my next CT result says and if it correlates with the CEA number.
But enough drama...I had several appointments with some very smart people this week that has given me a renewed sense of motivation.
On Tuesday I had an appointment with an exercise physiologist who gave me a band workout that won't eat up too many calories and will hopefully remind my body that I actually need those muscles and it's not very appropriate to eat them. He also turned me on to a new start-up called Green Growlers. Tami and I had been looking for a way to start Green Smoothies but were a bit intimidated. This company delivers growlers full of organic green smoothies to your door once a week. This is going to be a great way to get introduced to the concept and I'm really excited about it.
On Thursday I had an appointment with a registered dietician who gave me clear and concise direction on a meal strategy. I'm going to increase my milk consumption, start putting protein powder in things that I never thought possible and eating more veg. I'm excited. I am also motivated like mad. I ordered a new set of bands, a different kind of sugar (dextrose vs sucrose or fructose) that is going to be easier on my liver and we're going to start with green smoothies this week.
Another motivating factor is today's CEA number. 106.1 That's a wonderful number. As this chart illustrates, the trend that began with my last lab result continues to head in the right direction. A drop of around 34 points! I'm really interested to see what my next CT result says and if it correlates with the CEA number.
In the line of thinking that you have to take the good with the bad...I'm still losing weight. Albeit only 2 pounds in the last 2 weeks, so that's good. But, with the weight loss and mix of drugs, I'm losing some mobility. I showed off my cane a couple of months ago and today I ordered something that will enable me to walk a bit further and rest when I need to. Even if it does make me look like an octogenarian. Now, this isn't an everyday device, but if I want to walk more than 5 to 10 minutes at a time I'll need it. It's the Rollator by Hugo...or as I will call it from now on...the McRocknRoll.
Yup...I've now got a walker. But as one reviewer on Amazon put it...It's a man-sized Rollator. That's right. 8" wheels instead of a puny 6". Reinforced aluminum frame with a seat bag AND a saddle bag. When I'm not tearin' up the pavement (or any other moderately graded terrain), I can sit back and relax on the padded seat and backrest. Manly comfort. ;) And to top it off, I got a sweet water bottle holder that bolts on to the frame for maximum hydration. Oh Yeah.
So...when life gives you lemons (or eats away at your muscle structure) find a way to adapt and overcome...even if it means getting a totally manly and rockin' Rollator.
Keep rolling my friends.
Jake
So...when life gives you lemons (or eats away at your muscle structure) find a way to adapt and overcome...even if it means getting a totally manly and rockin' Rollator.
Keep rolling my friends.
Jake
Friday, February 21, 2014
Good news, changes in treatment and a new concern
It was long shitty day.
Today was treatment #7, the treatment that almost didn't happen. It was a day that started at 7:30 and ended at 3pm...and that's just hospital time.
Delay #1 - They had issues drawing blood from my port. This may be due to the catheter shifting in the artery and acting like a straw at the bottom of a cup. Blow into the straw and you're good, try to drink from the straw and it suctions to the bottom of the cup and prevents liquid from coming up. It could also be fibrous material growing/collecting at the tip of the catheter. Either way, something will have to be done at my next appointment to fix it. I've been assured that they won't have to go back in and fiddle with it so surgery won't be necessary. Which is good because that would put me off chemo for a couple of cycles with the blood thinners.
Delay #2 - Because of my weight loss my Dr wanted to have me join a clinical trial (more on this later). We were pretty excited about this and immediately agreed. There was a lot of hope and good feeling conveyed about my participation. This would also necessitate that I delayed my chemo treatment for a week. (I was looking forward to a week off.) After signing all of the consent forms, it required an EKG. So we waited for a tech and had the test run. After I had all of the pads ripped from my hairy appendages, I was told that we would need to repeat it because one of the numbers was slightly high. 30 minutes later I was being hooked up for my second EKG when the trials nurse came in and said that I had been disqualified from participation because I've had blood clots in the last month. Damn it. 2 hours (and quite a bit of leg and chest hair) gone.
After that news it was determined that I would have treatment today. So I did. My original appointment was at 9:15 and I checked in to the infusion suite at 11. And it started with a new drug. Now...new drugs always give me a little bit of heartburn. You never really know what you're going to get with it. That point was driven home today when a woman in the suite next to mine had an allergic reaction to one of her drugs and went unconscious. They had to call in a rapid response team and pump her full of steroids and other drugs to wake her up. As someone who now puts a variety of chemicals in their body, this is always a lingering thought in the back of my mind. The new drug replaces my Avastin and is named after an alien planet...the planet Zaltrap. Yes...I'm filling my veins with something that sounds like a 1980's space character. We'll see if it has a better result than the Avastin.
Good news - So here's the good news...I'm putting it right in the middle because...well that's just where it fits. It's nothing to end on (although it should be) and I wanted to bitch about my day first. So this is what you get. My tumors haven't progressed much at all. Certainly not like they did between my diagnosis and second CT where they exploded like a bunch of little party poppers that you get on New Year's Eve. And to back that up? My tumor marker, the CEA number that you hear me talk about from time to time, has gone down. You heard me right...DOWN. And by more than it went up last time. This time it's 140.4. That is a drop of almost 20 points! Right now, this is the ONLY thing keeping my head above water. I didn't find out about it until I got home, but it was news that I needed, when I needed it most.
A new concern - Why did I need good news? A new C word. And this one doesn't end with *ancer. The word is Cachexia . According to the National Institute of Health, "Cancer cachexia describes a syndrome of progressive weight loss, anorexia, and persistent erosion of host body cell mass in response to a malignant growth." It's also known as wasting syndrome. It basically means that my body is slowly eating itself and despite my nutritional efforts to this point, I have been unable to stop it from feasting. In just under 4 months, I've lost 46 pounds. If you do the math (which I have many time in the past few weeks) that doesn't give me a lot of time to fix this. In another 4 months, without any changes, I'll be under 160 pounds. We're talking middle school weight for me and not at all healthy. Without sugar coating anything...it would be near the end. That's the hard part of all of this. I have terminal cancer. And now that seems to be the small problem.
I don't like to end these things on a dark note...and I'm trying to focus on the positive. The fact that I'm feeling stronger and reacting to my treatments faster and better...I realize that those things should be my beacons in the night. But this is all just a bit overwhelming at the moment and the issue of mortality is front and center...and for the first time in this journey...measurable. I can't put into words how difficult it is to share this. It feels wrong. It seems like it should be something that I keep to myself and struggle with, without bringing everyone else into it. But I know that I need the prayers and support and positive energy. Because my tank of that stuff is really low at the moment.
Don't lose sight of the truly important things in life. Hold your loved ones close. And forgive those who may have wronged you.
I love you all.
Jake
Today was treatment #7, the treatment that almost didn't happen. It was a day that started at 7:30 and ended at 3pm...and that's just hospital time.
Delay #1 - They had issues drawing blood from my port. This may be due to the catheter shifting in the artery and acting like a straw at the bottom of a cup. Blow into the straw and you're good, try to drink from the straw and it suctions to the bottom of the cup and prevents liquid from coming up. It could also be fibrous material growing/collecting at the tip of the catheter. Either way, something will have to be done at my next appointment to fix it. I've been assured that they won't have to go back in and fiddle with it so surgery won't be necessary. Which is good because that would put me off chemo for a couple of cycles with the blood thinners.
Delay #2 - Because of my weight loss my Dr wanted to have me join a clinical trial (more on this later). We were pretty excited about this and immediately agreed. There was a lot of hope and good feeling conveyed about my participation. This would also necessitate that I delayed my chemo treatment for a week. (I was looking forward to a week off.) After signing all of the consent forms, it required an EKG. So we waited for a tech and had the test run. After I had all of the pads ripped from my hairy appendages, I was told that we would need to repeat it because one of the numbers was slightly high. 30 minutes later I was being hooked up for my second EKG when the trials nurse came in and said that I had been disqualified from participation because I've had blood clots in the last month. Damn it. 2 hours (and quite a bit of leg and chest hair) gone.
After that news it was determined that I would have treatment today. So I did. My original appointment was at 9:15 and I checked in to the infusion suite at 11. And it started with a new drug. Now...new drugs always give me a little bit of heartburn. You never really know what you're going to get with it. That point was driven home today when a woman in the suite next to mine had an allergic reaction to one of her drugs and went unconscious. They had to call in a rapid response team and pump her full of steroids and other drugs to wake her up. As someone who now puts a variety of chemicals in their body, this is always a lingering thought in the back of my mind. The new drug replaces my Avastin and is named after an alien planet...the planet Zaltrap. Yes...I'm filling my veins with something that sounds like a 1980's space character. We'll see if it has a better result than the Avastin.
Good news - So here's the good news...I'm putting it right in the middle because...well that's just where it fits. It's nothing to end on (although it should be) and I wanted to bitch about my day first. So this is what you get. My tumors haven't progressed much at all. Certainly not like they did between my diagnosis and second CT where they exploded like a bunch of little party poppers that you get on New Year's Eve. And to back that up? My tumor marker, the CEA number that you hear me talk about from time to time, has gone down. You heard me right...DOWN. And by more than it went up last time. This time it's 140.4. That is a drop of almost 20 points! Right now, this is the ONLY thing keeping my head above water. I didn't find out about it until I got home, but it was news that I needed, when I needed it most.
A new concern - Why did I need good news? A new C word. And this one doesn't end with *ancer. The word is Cachexia . According to the National Institute of Health, "Cancer cachexia describes a syndrome of progressive weight loss, anorexia, and persistent erosion of host body cell mass in response to a malignant growth." It's also known as wasting syndrome. It basically means that my body is slowly eating itself and despite my nutritional efforts to this point, I have been unable to stop it from feasting. In just under 4 months, I've lost 46 pounds. If you do the math (which I have many time in the past few weeks) that doesn't give me a lot of time to fix this. In another 4 months, without any changes, I'll be under 160 pounds. We're talking middle school weight for me and not at all healthy. Without sugar coating anything...it would be near the end. That's the hard part of all of this. I have terminal cancer. And now that seems to be the small problem.
I don't like to end these things on a dark note...and I'm trying to focus on the positive. The fact that I'm feeling stronger and reacting to my treatments faster and better...I realize that those things should be my beacons in the night. But this is all just a bit overwhelming at the moment and the issue of mortality is front and center...and for the first time in this journey...measurable. I can't put into words how difficult it is to share this. It feels wrong. It seems like it should be something that I keep to myself and struggle with, without bringing everyone else into it. But I know that I need the prayers and support and positive energy. Because my tank of that stuff is really low at the moment.
Don't lose sight of the truly important things in life. Hold your loved ones close. And forgive those who may have wronged you.
I love you all.
Jake
Wednesday, February 12, 2014
Drained...on fumes...totally gassed
This week has been filled with surprises. I woke up on Monday morning (the Monday after chemo weekend) and didn't feel like death. In fact I didn't feel too bad at all. There were spots where I didn't do too good. But in general I didn't fare too badly. I even ventured out and purchased two pairs of pants (because nothing fits my shrinking body anymore). And then Tuesday I put in almost a full day working from home. Score! I felt so good that I challenged myself to get up before the sun and actually drive myself to work. Now...this has been a goal for some time, but hasn't come to fruition since my treatments started. Well I did it. So there. Go me. :)
Today was a blur. I got to work at 7:00 and figured that anything else was icing on the cake. I mean, I just pulled off a feat 3 months in the making. I got my butt out of bed at 5 am, gathered all the necessary accoutrement and drove a motor vehicle, by myself, and parked in the parking lot on base...without killing anyone, including me! Level up accomplished. Now I just had the rest of the day ahead.
Ever since my treatments started, I've been half time onsite at work. My boss and my team have been wonderful with accommodating my schedule, as unpredictable and sporadic as it may be. The other half of the time, I either work from home or take sick time and sleep, or moan, or throw up. You know...standard cancer stuff. So today, being the epic accomplishment of just-showing-up day, I figured that I would fade around 10:30 and go home to sleep it off. I'm glad I brought my 1:30 injection and 2:00 pain pill just in case (I was briefly a boyscout in my youth).
I started making real progress on this project that I'm on, I mean tangible, people-can-see-this kind of progress and I didn't really keep track of time or want to stop. After hitting a light snack at 10:00 and doing some bicep curls and forearm exercises with bands, I put my head down. By 12:30 I knew I had messed up. I couldn't walk straight, much less drive a car 25 miles home. So I did what anyone would do...I looked in the snack bar fridge for some quick calories to get me home. A Red Barron personal pizza did the trick. Although it was far from the taste experience I remember from college. Yuck.
I surfed the Internet for 30 minutes while I waited for the boost. While I was doing that I made another breakthrough on my project...I thought. But how to proof it out? I mean, as soon as I can stand I'm walking out the door to get in my car and drive home. Or am I? Tami is a saint and packed me a snack bag to keep in my drawer at work. It has peaches in it. Peaches in heavy syrup. To the snack drawer! One cup of peaches later and it's time for a pain pill and my injection. After tackling both of those and recomposing myself I hit the hallway for politicking and theory validation.
I ended up volunteering to be a champion for another team's cause because it just makes sense and they need a voice on my team. Then off to the computers to prove that I've cleared this latest technical hurdle. Just 90 minutes later and I have. We have yet another vital component to continuing our project. My cape was flapping in the wind triumphantly. :)
So now it's 3:30. 5 hours after I anticipated being gone, and coincidentally, the end of my regular work day. Holy crap! After 3 months of grinding out half days and patching together telecommuting time, I spent and entire day onsite...at work...and was productive for almost all of that time?!?!?! You could've pushed me over with your pinky. No really...I was feeling the hurt by then. It was time to go. Just grab a Vitamine Water for some up-and-at'em and head out the door. But I had to get my pants from the seamstress. Shoot. Well...I haven't stopped yet so why stop now?
So I head across town to grab my pants. But there's a Sprouts next door and I don't think we have anything planned for dinner. Plus I need some ingredients for my new ice cream maker. Don't get all excited now...it was flaxseed oil and cottage cheese. Yeah...I'm sure there will be a blog about that experience. I rummage around Sprouts to the tune of $50 and finally get in the car to head home. I navigate pre rush hour traffic easily, still riding my I-can't-believe-I'm-still-going high, and then...just two miles from home, I hit the wall. Or the wall hit me. Either way, I'm glad that I could at least point in the direction of my house so the car would know where to drop me off.
I stumbled in the door and doggedly made the dinner that I had planned. (Veggie hotdogs and veggie chicken nuggets with salads...the salads were good....) After dinner it was clear. I would be a worthless lump for the rest of the evening. I managed to brush Myah's hair, but that is the sum total of my accomplishments after 6:30. At this point in the evening I don't know what tomorrow holds. I may not be able to get out of bed or lift my arms or even speak. But today was magnificent. I hope that I can repeat half of what I did today tomorrow. Tami says that she will have no sympathy if I can't move in the morning. (I don't believe her though)
Apparently I'm into the string-words-together-to-emphasize-something style tonight. Sorry about that. I'm talking pretty slurry too so I guess it makes sense.
The next time you feel like you can't do something...try it. You might be surprised by what you can accomplish.
I'm off to save a train full of orphans speeding towards a washed out bridge. Have a great night!
Jake
Tuesday, February 4, 2014
Best Weekend Ever! And a new bump in the road...
No...I'm not a Seahawks fan. I am a fan of two amazing people that brought it upon themselves to follow my schedule, pick out a time that had the best chance of an "energetic" Jake, purchase tickets, book hotels and rent a car just so they could show up on my doorstep to show me a good time. Jasen and Sunshine, I love you dearly. Even though you didn't ask if you could come before you spent time and money to travel over 1000 miles to see me. You took me as I was. Yes, the first day I had to take a nap in the middle, but Superbowl Sunday, we did a lot! This is how I show my out of town friends, who've never been here before, a good time with only two days to work with.
Friday night:
They arrive and I send them to a great bar for dinner (Turtle Mountain Rocks!)...where the kitchen was closed. Luckily I gave them a back up plan to head over to the Fat Squirrel if anything went awry. And they did. And they ate well. :)
Saturday:
We had to start the day with a proper Frontier breakfast. So after a quick tour of the house, we piled in the cars and headed downtown. Myah, of course traveled with two of her favorite people on the planet...Jasen and Sunshine. During the drive down they hatched a plan. Myah would be a tour guide after breakfast and Mom and Dad would come home...alone. But first?
Breakfast. I knew that I only had one shot at this, so I ordered for both of them. A breakfast burrito with green chile and their choice of meat (smothered in that other worldly awesome green chile stew found at the front in the Frontier cauldrons of awesomeness), carne adovada burrito, fresh squeezed orange juice and a Frontier roll (ordered hot and delivered at the counter of course). I have to hand it to each of them. They finished each item with ease and a spirit of joy and happiness that is only found in children on Christmas or anyone going to the Frontier for breakfast.
Myah's Plan...Myah made a list while we were at the Frontier. Duck Pond, Old Town, Petroglyphs, Volcanoes...and something else I think, but I can't remember. Since the Duck Pond was right across the street, Tami and I decided to join them and walk off some of breakfast. We stayed a bit longer than I anticipated and I left with a pretty empty gas tank, but it was great to relive old times for two of my best friends. We even saw an SCA speed-fighting practice. Myah liked that. Since I was seriously dragging at this point we all chose to leave and continue the day's plans. I went home and fell asleep and Myah, Jasen and Sunshine headed down to Old Town. I can't share much of how Myah's day went with her two favorite people because I was unconscious at the time, but apparently they made some scents, went to the Candy Lady and walked around quite a bit. All capped off by the item that I had forgotten...A big shake from the Route 66 Diner. (That was lunch)
Dinner. Los Cuates. Frank's combo. 'Nuff said. People went home full and happy.
Sunday:
The day started later at my request (so I didn't have to check out mid way through). We hung around and talked for awhile and then I treated them to some Rebel Donuts. Needless to say, they were a big hit. :) Then we walked those off at the Volcanoes, where I (yes, me, Jake) walked an entire mile with my wife to and from the base of the closest cone. (Turns out this may have been a mistake but we'll catch up with that story down the page a bit.) The intrepid trio then headed out to the Petroglyphs while I got in contact with my parents who had agreed to furnish the Superbowl eats. Italian beef sandwiches and potato salad from our old family restaurant recipe. There were some off the hook brownies in there too. Again...my people ate well and were happy. The game was an afterthought really. Sure, we watched it until the end, but only because we were having such a wonderful time being together. I really am so blessed to have friends like those two (and so many more of you too!).
This visit pulled me out of some place dark. I've been silently dying for 3 months. This weekend I really lived for the first time since my diagnosis. There was very little talk about how sick I was. And the times it did come up were so honest and open, that we all gained a better understanding of it.
Thank you Jasen and Sunshine for doing something magical for me. I will never forget this weekend or the innumerable nights and weekends that we spent laughing in Green Bay. You are so special to me.
And then it happened...Sunday night I went to bed. Many of you know that I've been having leg issues for the past week. Severe pain in my calf that radiated up to my hamstring and back. I had a scan on Wednesday of last week that showed no clots, but no one could answer why it hurt so bad. That Sunday night my leg hurt so bad that I was kept awake from 2 to 4 in the morning in agonizing pain. Pain that had migrated up to the back of my knee. Tami helped with an ativan and a heat bag but it only served to help me sleep, and nothing for the pain. So Monday I vowed to see my friends off and go to an Urgent Care. So I did. We picked one out that we thought would be speedy (wrong) and reasonably clear of sick people (also wrong). After a quick lunch, we headed into the breach...that's where things start to get interesting.
After securing a mask on my face as soon as humanly possible after seeing the state of the waiting room, we checked in. We were taken back for vitals not too long after that and then sent back to the viral breeding ground. Thankfully, one of the nurses saw Stage IV Cancer Patient written on our information sheet and we were quickly whisked into a private room to wait. This was a nice, and a very much appreciated touch. After a bit, the nurse practitioner came in and asked questions, poked my leg and tried to stretch and move it to see how much pain and limitation I was really experiencing. Stumped, she left to consult with a doctor. After coming back in she proclaimed that if it wasn't a blood clot, she didn't know what it was. But she ordered a back x-ray to see if I was experiencing any bone issues there...it was a vague explanation and offered little information besides the fact that (in her words), "You've got a lot of stool in your belly. You should drink more water." After reminding her that everything I'm taking at the moment causes constipation, we moved on.
She said that I needed another scan. *sigh* And that the vascular lab for ABQ Health Partners was down town. *double sigh* Another cross-town goose chase that would put me in the thick of rush hour traffic and just add to my ongoing consternation. Luckily I had Tami there to be a backup driver (and backup anything else really), so we made like bananas and split. Seriously, it was 3:15 and we were in Rio Rancho. She made the appointment for 3:30 and told them that we would be a few minutes late. In the car we didn't talk about much beyond our experience at that urgent care and how we wouldn't be going back anytime soon.
We arrived at the vascular lab at 3:45 (because I rock and am awesome at speeding through town because I've been giving an unrealistic time frame...again). I checked in and was immediately called back, not a surprise since we were literally the only ones there. As we walked back to the ultrasound suite with two technicians, the first extends his hand and introduces himself as John, a CNM (local technical college for the out of staters) intern who would performing 90% of my scan. My already dreary mood takes a nose dive. The other technician is Mike and he will be walking John through the procedure and helping when needed. "Where is this day headed?", I ask myself. But before we go any further I have to travel back to last week and tell you about that experience. Bear with me...it is relevant.
My first scan went a little like this:
Me: Howdy!
Tech: Hiya!
(Both characters enter the procedure room with Tech leading the way)
Me: (starting to place phone, hat and water on the table and preparing to disrobe) Do I put the gown on in here?
Tech: Oh, there's no need to get into a gown, this will be quick.
Me: Sounds good. (starts to take off jacket)
Tech: Oh just leave that on. Really this will be quick. Now hop on the table on your back.
Me: Um, alright. (looking perplexed but grateful that it won't be long and complicated)
Tech: Now, just undo your belt and pull your pants down to your ankles.
(Me, still lying on my back, complies and ends up on a table with a jacket on and pants around my ankles)
(The scan begins and the gel is cooooold)
Tech: (running the wand up and down my leg like a NASCAR driver, stopping briefly now and then to take a picture) You've got good sound through all your veins and I don't see any signs of clotting
Me: That's good news! My pain is more in the middle of my calf.
Tech: A lot of patients ask me why I'm not scanning the area that hurts. This is a very specific test, looking for very specific veins. Your pain might not be near one of those veins. So trust me.
(Tech gives Me a towel to wash the goo off my leg and pull my pants up)
Less than ten minutes after I lay down, it was done. Had I not been as tired or relieved that no clots were found, I may have felt like this was an alleyway appendectomy. But I didn't. So we fast forward to Monday of this week. Again, right before the closing bell of the department and now I have an intern looking into my legs. My left leg took almost an hour. They found three clots. The one in my calf had traveled up to a spot behind my knee. I'm guessing this happened on the night after my mile long, Super Jake adventure. This is how different these guys were when compared to the lady at UNM. After finding the clots in my left leg, they scanned the right leg as well. Just in case. Between these scanning sessions I asked that Tami be brought in because we had some calls to make and it was dangerously close to 5pm.
The only referrals that the techs at ABQ HP could make were to an independent coumadin clinic or the ER. After the day that I had, I was NOT spending the night in the ER. So Tami got in touch with my super cool oncology team at UNM and updated them on the situation. After some time they got back to us and said that I could start getting my shots that night at the UNMCC infusion lab (same place I go for treatments). Huzzah! So no ER for me...as long as I could get there by 6pm. By now they are finished with my right leg and had gone back to left leg for some shots that they hadn't taken before (comprehensive and responsible...unlike the tech at UNM) and it was a shade before 5:30. Luckily we were only 5 minutes from UNMCC. Finally, we're not rushed.
So there we have it. I have clotting in my left leg. I have to get daily shots for 30 days and then reevaluate. This week all of those shots will be at UNM. Even on Saturday and Sunday while I'm fanny pack infusing. Hopefully next week we get clearance to do the injections at home. Meanwhile, I'm to stop practicing my sword swallowing, chainsaw juggling and crocodile wrestling. And since I'm going to suseptible to clotting in the future (two of my chemo drugs list it as a side effect), it doesn't look like I'll get back to those activities anytime soon. *le sigh* I did put together a bleeder specific first aid kit to to carry with me though. And a bigger version for the car. 'Cause I'm smart like that. (It was my Dad's idea...)
With all of the other things that can kill me right now, I'd much rather not have something that can do it so quickly, but we have to play the hand that was dealt us. So we adjust, compensate and move on. Tami and I are getting pretty good at that. :)
Get up out of your seat and take a five minute walk at least once an hour folks. Your veins will thank you. And you might just meet someone new on your micro journeys. Or at least smell a flower, or some coffee...you get the idea. Get moving people!
Jake
Friday night:
They arrive and I send them to a great bar for dinner (Turtle Mountain Rocks!)...where the kitchen was closed. Luckily I gave them a back up plan to head over to the Fat Squirrel if anything went awry. And they did. And they ate well. :)
Saturday:
We had to start the day with a proper Frontier breakfast. So after a quick tour of the house, we piled in the cars and headed downtown. Myah, of course traveled with two of her favorite people on the planet...Jasen and Sunshine. During the drive down they hatched a plan. Myah would be a tour guide after breakfast and Mom and Dad would come home...alone. But first?
Breakfast. I knew that I only had one shot at this, so I ordered for both of them. A breakfast burrito with green chile and their choice of meat (smothered in that other worldly awesome green chile stew found at the front in the Frontier cauldrons of awesomeness), carne adovada burrito, fresh squeezed orange juice and a Frontier roll (ordered hot and delivered at the counter of course). I have to hand it to each of them. They finished each item with ease and a spirit of joy and happiness that is only found in children on Christmas or anyone going to the Frontier for breakfast.
Myah's Plan...Myah made a list while we were at the Frontier. Duck Pond, Old Town, Petroglyphs, Volcanoes...and something else I think, but I can't remember. Since the Duck Pond was right across the street, Tami and I decided to join them and walk off some of breakfast. We stayed a bit longer than I anticipated and I left with a pretty empty gas tank, but it was great to relive old times for two of my best friends. We even saw an SCA speed-fighting practice. Myah liked that. Since I was seriously dragging at this point we all chose to leave and continue the day's plans. I went home and fell asleep and Myah, Jasen and Sunshine headed down to Old Town. I can't share much of how Myah's day went with her two favorite people because I was unconscious at the time, but apparently they made some scents, went to the Candy Lady and walked around quite a bit. All capped off by the item that I had forgotten...A big shake from the Route 66 Diner. (That was lunch)
Dinner. Los Cuates. Frank's combo. 'Nuff said. People went home full and happy.
Sunday:
The day started later at my request (so I didn't have to check out mid way through). We hung around and talked for awhile and then I treated them to some Rebel Donuts. Needless to say, they were a big hit. :) Then we walked those off at the Volcanoes, where I (yes, me, Jake) walked an entire mile with my wife to and from the base of the closest cone. (Turns out this may have been a mistake but we'll catch up with that story down the page a bit.) The intrepid trio then headed out to the Petroglyphs while I got in contact with my parents who had agreed to furnish the Superbowl eats. Italian beef sandwiches and potato salad from our old family restaurant recipe. There were some off the hook brownies in there too. Again...my people ate well and were happy. The game was an afterthought really. Sure, we watched it until the end, but only because we were having such a wonderful time being together. I really am so blessed to have friends like those two (and so many more of you too!).
This visit pulled me out of some place dark. I've been silently dying for 3 months. This weekend I really lived for the first time since my diagnosis. There was very little talk about how sick I was. And the times it did come up were so honest and open, that we all gained a better understanding of it.
Thank you Jasen and Sunshine for doing something magical for me. I will never forget this weekend or the innumerable nights and weekends that we spent laughing in Green Bay. You are so special to me.
And then it happened...Sunday night I went to bed. Many of you know that I've been having leg issues for the past week. Severe pain in my calf that radiated up to my hamstring and back. I had a scan on Wednesday of last week that showed no clots, but no one could answer why it hurt so bad. That Sunday night my leg hurt so bad that I was kept awake from 2 to 4 in the morning in agonizing pain. Pain that had migrated up to the back of my knee. Tami helped with an ativan and a heat bag but it only served to help me sleep, and nothing for the pain. So Monday I vowed to see my friends off and go to an Urgent Care. So I did. We picked one out that we thought would be speedy (wrong) and reasonably clear of sick people (also wrong). After a quick lunch, we headed into the breach...that's where things start to get interesting.
After securing a mask on my face as soon as humanly possible after seeing the state of the waiting room, we checked in. We were taken back for vitals not too long after that and then sent back to the viral breeding ground. Thankfully, one of the nurses saw Stage IV Cancer Patient written on our information sheet and we were quickly whisked into a private room to wait. This was a nice, and a very much appreciated touch. After a bit, the nurse practitioner came in and asked questions, poked my leg and tried to stretch and move it to see how much pain and limitation I was really experiencing. Stumped, she left to consult with a doctor. After coming back in she proclaimed that if it wasn't a blood clot, she didn't know what it was. But she ordered a back x-ray to see if I was experiencing any bone issues there...it was a vague explanation and offered little information besides the fact that (in her words), "You've got a lot of stool in your belly. You should drink more water." After reminding her that everything I'm taking at the moment causes constipation, we moved on.
She said that I needed another scan. *sigh* And that the vascular lab for ABQ Health Partners was down town. *double sigh* Another cross-town goose chase that would put me in the thick of rush hour traffic and just add to my ongoing consternation. Luckily I had Tami there to be a backup driver (and backup anything else really), so we made like bananas and split. Seriously, it was 3:15 and we were in Rio Rancho. She made the appointment for 3:30 and told them that we would be a few minutes late. In the car we didn't talk about much beyond our experience at that urgent care and how we wouldn't be going back anytime soon.
We arrived at the vascular lab at 3:45 (because I rock and am awesome at speeding through town because I've been giving an unrealistic time frame...again). I checked in and was immediately called back, not a surprise since we were literally the only ones there. As we walked back to the ultrasound suite with two technicians, the first extends his hand and introduces himself as John, a CNM (local technical college for the out of staters) intern who would performing 90% of my scan. My already dreary mood takes a nose dive. The other technician is Mike and he will be walking John through the procedure and helping when needed. "Where is this day headed?", I ask myself. But before we go any further I have to travel back to last week and tell you about that experience. Bear with me...it is relevant.
My first scan went a little like this:
Me: Howdy!
Tech: Hiya!
(Both characters enter the procedure room with Tech leading the way)
Me: (starting to place phone, hat and water on the table and preparing to disrobe) Do I put the gown on in here?
Tech: Oh, there's no need to get into a gown, this will be quick.
Me: Sounds good. (starts to take off jacket)
Tech: Oh just leave that on. Really this will be quick. Now hop on the table on your back.
Me: Um, alright. (looking perplexed but grateful that it won't be long and complicated)
Tech: Now, just undo your belt and pull your pants down to your ankles.
(Me, still lying on my back, complies and ends up on a table with a jacket on and pants around my ankles)
(The scan begins and the gel is cooooold)
Tech: (running the wand up and down my leg like a NASCAR driver, stopping briefly now and then to take a picture) You've got good sound through all your veins and I don't see any signs of clotting
Me: That's good news! My pain is more in the middle of my calf.
Tech: A lot of patients ask me why I'm not scanning the area that hurts. This is a very specific test, looking for very specific veins. Your pain might not be near one of those veins. So trust me.
(Tech gives Me a towel to wash the goo off my leg and pull my pants up)
Less than ten minutes after I lay down, it was done. Had I not been as tired or relieved that no clots were found, I may have felt like this was an alleyway appendectomy. But I didn't. So we fast forward to Monday of this week. Again, right before the closing bell of the department and now I have an intern looking into my legs. My left leg took almost an hour. They found three clots. The one in my calf had traveled up to a spot behind my knee. I'm guessing this happened on the night after my mile long, Super Jake adventure. This is how different these guys were when compared to the lady at UNM. After finding the clots in my left leg, they scanned the right leg as well. Just in case. Between these scanning sessions I asked that Tami be brought in because we had some calls to make and it was dangerously close to 5pm.
The only referrals that the techs at ABQ HP could make were to an independent coumadin clinic or the ER. After the day that I had, I was NOT spending the night in the ER. So Tami got in touch with my super cool oncology team at UNM and updated them on the situation. After some time they got back to us and said that I could start getting my shots that night at the UNMCC infusion lab (same place I go for treatments). Huzzah! So no ER for me...as long as I could get there by 6pm. By now they are finished with my right leg and had gone back to left leg for some shots that they hadn't taken before (comprehensive and responsible...unlike the tech at UNM) and it was a shade before 5:30. Luckily we were only 5 minutes from UNMCC. Finally, we're not rushed.
So there we have it. I have clotting in my left leg. I have to get daily shots for 30 days and then reevaluate. This week all of those shots will be at UNM. Even on Saturday and Sunday while I'm fanny pack infusing. Hopefully next week we get clearance to do the injections at home. Meanwhile, I'm to stop practicing my sword swallowing, chainsaw juggling and crocodile wrestling. And since I'm going to suseptible to clotting in the future (two of my chemo drugs list it as a side effect), it doesn't look like I'll get back to those activities anytime soon. *le sigh* I did put together a bleeder specific first aid kit to to carry with me though. And a bigger version for the car. 'Cause I'm smart like that. (It was my Dad's idea...)
With all of the other things that can kill me right now, I'd much rather not have something that can do it so quickly, but we have to play the hand that was dealt us. So we adjust, compensate and move on. Tami and I are getting pretty good at that. :)
Get up out of your seat and take a five minute walk at least once an hour folks. Your veins will thank you. And you might just meet someone new on your micro journeys. Or at least smell a flower, or some coffee...you get the idea. Get moving people!
Jake
Thursday, January 30, 2014
Peg legs, Emergency scans and Curb appeal
The last 3 days have been up and down and filled with anxiety and exhaustion, but also some really cool things. On Monday my left calf started feeling a bit sore. On Tuesday the feeling was like a charlie horse that was right in the middle of my calf muscles at the base of my knee, or...top of my calf, however you want to see it. By the middle of the day on Tuesday I couldn't walk because of the pain. (bear in mind that I am on a constant stream of oxycodone 24 hours a day...so feeling pain means that the pain is pretty big) Tuesday night we tried massage, stretching, heat and Tiger's Balm. Stretching helps for a few minutes and I love the way Tiger's Balm smells (which is why I'm using it again tonight!). But nothing will make it go away permanently, so I alternate between looking like a pirate with a peg leg and a grown man with yet another pain so severe that it makes him cry like a baby when it's firing on all cylinders.
By Wednesday, the pain was so severe that I told Tami that I'd be willing to involve the medical community. So after much cajoling and looking for numbers we called the triage nurse at UNMCC. Why call the cancer clinic for leg pain? Two of my chemo drugs are known to cause blood clots and since the pain was so severe and so quickly onset we called them as instructed on our instructions sheets. For those not in the know a DVT (or deep vein thrombosis) is a potentially deadly thing. Now...you all know me. I did my homework. So when I talked with the triage nurse, I was sure to mention that I wasn't exhibiting any of the symptoms of DVT except for the pain and location of that pain...and speed at which that pain came on. But nothing else. No fever, no swelling or bruising. I was pretty convincing in my opinion. The triage nurse consulted with my doctor and said we need to get you to UNMH for a vascular scan right now. Can you make it by 5? It was 4:10. She still had to talk to me about the treatment and I live on the other side of the world. So here's how it played out:
4:10 - Nurse: Do you know where the vascular clinic is?
Me: No
Nurse: Are you familiar with parking and the new additions to the hospital?
Me: Unfortunately not.
Nurse: Hold on...
4:15 - The nurse gave directions and told me to go the old part of the hospital, to the main elevators and then to the 2nd floor.
4:20 - Nurse: Do you think you can make it? If you miss it you will have to go to the UNM Urgent care in the same building.
Me: Well...I'm 35 minutes away and it's close to rush hour, but I'll try.
4:25 - Tami: You're going to have your Dad drive you right? (Tami was taking care of Myah who was really sick yesterday and needed someone there.
Me: There's no time.
4:26 - In my car WAY after the hours that I'm used to driving these days, flying down the roads to I-40.
4:40 - I get to the freeway and think to myself..."I'm totally screwed."
4:50 - I miss the frontage road entrance (the only fast way to the hospital from my direction) and am forced to navigate downtown traffic...at rush hour.
4:57 - I finally get to the hospital and find a spot in the parking garage...which, as it turns out, is like 15 miles from the old main entrance . (Of course I'm exagerating, but I've got 3 minutes to gimp through a new addition to the hospital and find a small room that I've never been before.
5:03 - I give the check-in woman my medical record number and pray. Thankfully she says that the tech is still there and there wasn't a need to send me down to the urgent care. *YES!*
So I get the scan. No clots. No answer as to what my pain is...but NO CLOTS. That's a good thing. A clot wouldv'e meant getting admitted right then and there and a whole new circus starting. So here I sit on Thursday with the same pain and no good way to fix it. I soaked in Epsom salts tonight and will douse myself in Tiger's Balm again tonight. But we'll see how I'm walking in the morning. Sitting and being otherwise immobile aggravates it. In fact, the hour I spent in the car driving home from the hospital last night became one of the most painful experiences outside of second chemo day that I've had in a while. I hobbled in the door and just started crying while Tami tried to stretch it out for me. (Man...does it seem like I cry a lot more lately? I think so. Hmmmm.)
So my walking speed has moved from snail's pace to glacial. Just in case you wanted to walk anywhere with me anytime soon. ;)
But it hasn't been all bad news and sour grapes. We got our new storm door and rear gate installed today and they look UH-MAZE-ING!! Here is our new storm door and (an in the showroom picture) our back gate.
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By Wednesday, the pain was so severe that I told Tami that I'd be willing to involve the medical community. So after much cajoling and looking for numbers we called the triage nurse at UNMCC. Why call the cancer clinic for leg pain? Two of my chemo drugs are known to cause blood clots and since the pain was so severe and so quickly onset we called them as instructed on our instructions sheets. For those not in the know a DVT (or deep vein thrombosis) is a potentially deadly thing. Now...you all know me. I did my homework. So when I talked with the triage nurse, I was sure to mention that I wasn't exhibiting any of the symptoms of DVT except for the pain and location of that pain...and speed at which that pain came on. But nothing else. No fever, no swelling or bruising. I was pretty convincing in my opinion. The triage nurse consulted with my doctor and said we need to get you to UNMH for a vascular scan right now. Can you make it by 5? It was 4:10. She still had to talk to me about the treatment and I live on the other side of the world. So here's how it played out:
4:10 - Nurse: Do you know where the vascular clinic is?
Me: No
Nurse: Are you familiar with parking and the new additions to the hospital?
Me: Unfortunately not.
Nurse: Hold on...
4:15 - The nurse gave directions and told me to go the old part of the hospital, to the main elevators and then to the 2nd floor.
4:20 - Nurse: Do you think you can make it? If you miss it you will have to go to the UNM Urgent care in the same building.
Me: Well...I'm 35 minutes away and it's close to rush hour, but I'll try.
4:25 - Tami: You're going to have your Dad drive you right? (Tami was taking care of Myah who was really sick yesterday and needed someone there.
Me: There's no time.
4:26 - In my car WAY after the hours that I'm used to driving these days, flying down the roads to I-40.
4:40 - I get to the freeway and think to myself..."I'm totally screwed."
4:50 - I miss the frontage road entrance (the only fast way to the hospital from my direction) and am forced to navigate downtown traffic...at rush hour.
4:57 - I finally get to the hospital and find a spot in the parking garage...which, as it turns out, is like 15 miles from the old main entrance . (Of course I'm exagerating, but I've got 3 minutes to gimp through a new addition to the hospital and find a small room that I've never been before.
5:03 - I give the check-in woman my medical record number and pray. Thankfully she says that the tech is still there and there wasn't a need to send me down to the urgent care. *YES!*
So I get the scan. No clots. No answer as to what my pain is...but NO CLOTS. That's a good thing. A clot wouldv'e meant getting admitted right then and there and a whole new circus starting. So here I sit on Thursday with the same pain and no good way to fix it. I soaked in Epsom salts tonight and will douse myself in Tiger's Balm again tonight. But we'll see how I'm walking in the morning. Sitting and being otherwise immobile aggravates it. In fact, the hour I spent in the car driving home from the hospital last night became one of the most painful experiences outside of second chemo day that I've had in a while. I hobbled in the door and just started crying while Tami tried to stretch it out for me. (Man...does it seem like I cry a lot more lately? I think so. Hmmmm.)
So my walking speed has moved from snail's pace to glacial. Just in case you wanted to walk anywhere with me anytime soon. ;)
But it hasn't been all bad news and sour grapes. We got our new storm door and rear gate installed today and they look UH-MAZE-ING!! Here is our new storm door and (an in the showroom picture) our back gate.
Pretty cool eh? I think they look so wonderful.
But to cap the night off, Myah and I had a talk about civics from a 9 year old perspective for almost an hour! And then she wanted to talk to Tami and I about health and other things for the rest of the night. She amazes me so much.
Sometimes ask your kids challenging questions like, "From a 9 year old's perspective what do you think the most important thing is, that government can do today?" You might be surprised by their answers.
We talked about federal and local government and I got to see her mind going through different scenarios and the benefits and downfalls of each position. If you really want an independent thinker, you've got to start them thinking about the hard stuff early. And then (the hardest part) let them work it out without you. (still trying to perfect this step *wink*)
Jake
Monday, January 27, 2014
Jake The Shake
An interesting thing has happened with this latest round of treatment. I'm gettin' all shook up!
It all started on Saturday morning. I hadn't had breakfast yet and I was feeling my usual weak and unstable self prior to eating. But what happened next was completely unexpected. I started to shake. Just tremors from time to time as I tried to cook my nitrate free bacon to go with some yummy scrambled eggs and cheese (I have to eat like this remember?). By the time the bacon was done (the entire package) I was having trouble getting the bacon out of the pan and on to the paper towel adorned holding plate. I thought this was, of course, due to not eating anything yet.
So I started on the eggs. In my haste to make something edible I completely forgot about the Boursin that I was going to add to the eggs and begrudgingly put some shredded colby jack on at the end instead. Good, but not great. Anywho...If you thought it was funny watching me transfer bacon from the pan to a plate, the same movement with eggs was even more pronounced. "So", I thought..."Better get some of this in my stomach."
By the time I got to the table, my shaking was so exaggerated that my daughter asked if I was OK. After assuring her that I just needed to eat something, I tried to dig in. For the most part it worked and I only had a couple of dropped bites, but it didn't calm down. So I decided to lay down for a bit. Once I laid down on the couch it abated after a while. I chalked it up to an anomaly...until it happened again the next day.
Sunday wasn't so bad and it happened later in the day after I had eaten, so I can rule out being hungry. Today (Monday) was the first day that I didn't shake noticeably...but I slept through half of it, so we'll see how tomorrow works out. I'm working from home to monitor the shakes and will hopefully return to the office on Wed. I know that this is a lofty goal, but I want to push myself...within reason. It was the same goal that I had two weeks ago...and all of you know how that worked out. I ended up not even being able to work from home. So cross your fingers!
Regardless of the cause for my shakes, the experience really got me to thinking. All of those people with Parkinson's or other malady that makes them shake uncontrollably have my utmost respect for what they are going through. It is such a disconcerting feeling to not have any control over a certain part of your body. In this case it was just my hands and arms, but I can only imagine the struggle that someone whose entire body is impacted goes through on a daily basis.
Oh yes...I am in fact starting to lose my hair. Thankfully, my hair is so short and I have a hair line that doesn't bode well for the future anyway...so it's not noticeable at all (unless you take a shower with me...but I don't see any lines forming for that ride anytime soon...unless I go completely bald. Let's face it, bald men are sexy.) Right now the loss seems to be confined to the hair on my head and I'm hoping that it stays that way. I like my beard.
Today I'm sharing my favorite moments of the day instead of offering a positive tidbit...
Earlier in the evening I managed to wake up for just long enough to play UNO with my girls. That was my favorite part of the day...until just a little while ago when I was brushing Myah's hair. I almost always brush Myah's hair, but it has become less common of an occurrence since I've been sick. Tonight was an exception though. As I combed through my daughter's golden locks (with quite a bit of spray-in detangler), she told me how much she missed me brushing her hair. If that didn't choke you up, here's what happened next...After I told her I was done and gave her a hug goodnight, she asked if I could brush her hair just a little more. She said that it felt good when I brushed it and she wanted some more time with me. THAT was my favorite part of the day...probably of the week. I love my girls so much.
Dads...go brush your daughters' hair. It's worth it, I promise. :)
Jake
It all started on Saturday morning. I hadn't had breakfast yet and I was feeling my usual weak and unstable self prior to eating. But what happened next was completely unexpected. I started to shake. Just tremors from time to time as I tried to cook my nitrate free bacon to go with some yummy scrambled eggs and cheese (I have to eat like this remember?). By the time the bacon was done (the entire package) I was having trouble getting the bacon out of the pan and on to the paper towel adorned holding plate. I thought this was, of course, due to not eating anything yet.
So I started on the eggs. In my haste to make something edible I completely forgot about the Boursin that I was going to add to the eggs and begrudgingly put some shredded colby jack on at the end instead. Good, but not great. Anywho...If you thought it was funny watching me transfer bacon from the pan to a plate, the same movement with eggs was even more pronounced. "So", I thought..."Better get some of this in my stomach."
By the time I got to the table, my shaking was so exaggerated that my daughter asked if I was OK. After assuring her that I just needed to eat something, I tried to dig in. For the most part it worked and I only had a couple of dropped bites, but it didn't calm down. So I decided to lay down for a bit. Once I laid down on the couch it abated after a while. I chalked it up to an anomaly...until it happened again the next day.
Sunday wasn't so bad and it happened later in the day after I had eaten, so I can rule out being hungry. Today (Monday) was the first day that I didn't shake noticeably...but I slept through half of it, so we'll see how tomorrow works out. I'm working from home to monitor the shakes and will hopefully return to the office on Wed. I know that this is a lofty goal, but I want to push myself...within reason. It was the same goal that I had two weeks ago...and all of you know how that worked out. I ended up not even being able to work from home. So cross your fingers!
Regardless of the cause for my shakes, the experience really got me to thinking. All of those people with Parkinson's or other malady that makes them shake uncontrollably have my utmost respect for what they are going through. It is such a disconcerting feeling to not have any control over a certain part of your body. In this case it was just my hands and arms, but I can only imagine the struggle that someone whose entire body is impacted goes through on a daily basis.
Oh yes...I am in fact starting to lose my hair. Thankfully, my hair is so short and I have a hair line that doesn't bode well for the future anyway...so it's not noticeable at all (unless you take a shower with me...but I don't see any lines forming for that ride anytime soon...unless I go completely bald. Let's face it, bald men are sexy.) Right now the loss seems to be confined to the hair on my head and I'm hoping that it stays that way. I like my beard.
Today I'm sharing my favorite moments of the day instead of offering a positive tidbit...
Earlier in the evening I managed to wake up for just long enough to play UNO with my girls. That was my favorite part of the day...until just a little while ago when I was brushing Myah's hair. I almost always brush Myah's hair, but it has become less common of an occurrence since I've been sick. Tonight was an exception though. As I combed through my daughter's golden locks (with quite a bit of spray-in detangler), she told me how much she missed me brushing her hair. If that didn't choke you up, here's what happened next...After I told her I was done and gave her a hug goodnight, she asked if I could brush her hair just a little more. She said that it felt good when I brushed it and she wanted some more time with me. THAT was my favorite part of the day...probably of the week. I love my girls so much.
Dads...go brush your daughters' hair. It's worth it, I promise. :)
Jake
Friday, January 24, 2014
Treatment #5 and a friend in need
Today I had my 5th treatment. As with all of the other Irenotecan side effects, I did sweat quite a bit. But they added atropine to my mix to dull some of those side effects. It has cut down on some of the sweating and possibly the cramping but I think the adavan has done more for the cramps. My confusion seems to be greatly reduced as well, but the abdominal swelling is still there and should be for the next couple of days. The good news is that I haven't sweat enough to go through an entire set of clothes yet. :)
I feel pretty good today, with just tiny bouts of confusion and discomfort. I'm hoping that we can keep this rolling through the weekend. Of course, only time will tell. The big test will be tomorrow when my 2nd chemo day hits. I'm hoping and praying that my Monday, Tuesday and Wednesday are better than last chemo weekend follow on. Last time I was so sapped of energy that I couldn't do much and ended up losing 5 pounds in just those 3 days. This time I'm going to try exercise and activity to combat that malaise.
But enough about me. I'd like all of my prayer warriors to take some of the positive prayer and energy that you are sending me and divert it to my friend and neighbor Chuck. On Monday of this week he was warming his car up in his driveway early in the morning (just like I do btw...) and someone decided that they were going to take it. Chuck was in the garage when they moved in and as he tried to stop them, they ran over him. He has had multiple surgeries for a collapsed lung, 10 broken ribs and a broken leg/ankle. The police said that a smaller man would have been killed. Chuck is still in the hospital and needs healing prayer. The police have found his car but have no leads on the suspects yet. Hopefully they will brought to justice soon.
This has brought yet another new set of experiences to our lives. Fear and anger. This happened Monday morning 50 feet from my front door. I was getting ready work at the time and heard a noise outside but was being sick in the sink at the time so I couldn't think much of it. I'm angry that there is evil in the world that would do this to a good man. I'm angry that I was too sick to know what was going on and be able to render proper aid. And fearful that this happened in a very quiet, close and seemingly safe neighborhood.
I pray this evening for a quick recovery for my friend and neighbor. I also pray that those who do this kind of thing have a change of heart and choose kindness and compassion over ill will and selfishness. It should also be said that they need to answer for their crimes and be held accountable to the fullest extent of the law.
Be kind to your brothers and sisters in this world. And I mean really be kind to all of them. Don't be selective because of what they've done or who they are or how they choose to live their lives. Every human being on this planet is deserving of your compassion and consideration. If everyone took a moment to understand that, this world would be such a better place.
I love you all
Jake
This has brought yet another new set of experiences to our lives. Fear and anger. This happened Monday morning 50 feet from my front door. I was getting ready work at the time and heard a noise outside but was being sick in the sink at the time so I couldn't think much of it. I'm angry that there is evil in the world that would do this to a good man. I'm angry that I was too sick to know what was going on and be able to render proper aid. And fearful that this happened in a very quiet, close and seemingly safe neighborhood.
I pray this evening for a quick recovery for my friend and neighbor. I also pray that those who do this kind of thing have a change of heart and choose kindness and compassion over ill will and selfishness. It should also be said that they need to answer for their crimes and be held accountable to the fullest extent of the law.
Be kind to your brothers and sisters in this world. And I mean really be kind to all of them. Don't be selective because of what they've done or who they are or how they choose to live their lives. Every human being on this planet is deserving of your compassion and consideration. If everyone took a moment to understand that, this world would be such a better place.
I love you all
Jake
Sunday, January 19, 2014
Friendship and a Superhero
So many people have offered to help my family and I with this struggle. The response from friends, family and people I don't even know has been humbling. I had no idea that I had touched that many lives. This help has come in many forms, from food to house cleaning offers to taking Myah so Tami and I can focus on each other or get through a chemo weekend. I am so touched by all of this generosity that I regularly devolve into a blubbering, sobbing mass trying to say thank you or put into words how much it means for this person(s) to do what they are doing.
I have so many dear friends. Since our little family unit has covered more than a few states in our 14 years, many of our friends are distant. That makes it difficult sometimes to communicate or offer to help. Some have gone so far as to offer to fly down just to see me or hold my hand while I struggle. These are some of the most amazing offers to me. That I would mean so much to a person that they would get on a plane and plan a trip consisting of multiple days just to be with me for an hour or two, boggles my mind.
This has been offered many times and actually scheduled more than once! I want to say to these people that I'm not worth the time and expense for such a short period of time and a completely uncertain set of circumstances. Depending on when they get here, I may be actively involved in a chemo treatment which can result in a confused, sweaty, falling down, wracked with pain (etc.etc.etc.) Jake. That's not how I want my friends to see me. But I am quickly reminded that it wouldn't matter to them. I'll always be their Jake. I may be fine one minute, involved with conversation or doing something outside of the house...and the next be couch ridden with pain or nausea or something else entirely. To which I am again reminded that it doesn't matter. If a two day visit turns into a 1 hour meeting they have achieved their goals, I've been told. These are amazing people.
I still maintain that, logistically, that is a lot of effort for an uncertain audience with little ol' me. But I've been learning to just go with it. So...if you live down the street or across the country and want to see me, here are the ground rules:
Try to come on a non-chemo week. Your return on investment has much greater odds at being positive.
If you have to come on a chemo week, just be aware that the visits will be short and you need to be prepared to see some demons, because that's when they have their day. It's not a pretty sight and sometimes turns into borderline horror show. It's hard to watch and if you don't want to see me at my worst, stay away from chemo weekend and the first part of chemo week.
Be ok with me passing gas, hocking up ungodly looking stuff from my throat and running to the sink to vomit. These occur daily and I can't control them, well not so much the vomiting...but definitely what sounds like it. If you don't like blood, I'm sorry. A lot of it comes out of my nose and throat. I can't do anything about it, so any uncovered trash can in the house looks like it's been ringside at a boxing match.
I might fall down. I might not be able to get up off the couch, or out of bed. I might be stuck in the bathroom. These are things that can happen at anytime. I can't predict them or control them.
OK...Now that I've scared everyone off...time for a quick status update!
A lot of people have been asking since my last blog post. My answer is this. MUCH better...for the past 48 hours. Friday was a good day at work. I got more accomplished than I was expecting and I got my wife to try Turkish food. :) Saturday was a complete surprise.
I felt really good when I got up that morning. We had planned on having my Dad help take down the unnecessarily large Martha Stewart Christmas tree in our upstairs loft. I felt so good that I took two of the pieces down myself, navigating stairs and hallways and corners all on my own. When my Dad arrived, he had my mother in tow and she was hellbent on cleaning. Everyone was involved in something and all expected nothing from me aside from the occasional wave from the couch. What they got was so much more. I vacuumed the entire house...both floors...including stairs! That's over 2700 sq/ft of carpeted area that I rocked with my (wife's) Dyson. Oh Yeah! Then I helped clean the kitchen and put away boxes in the garage (which required climbing a ladder several times...). And then? I helped hang a curtain. BOOM! SuperJake
Today I didn't feel as good as I did yesterday, but I certainly felt better than earlier in the week.
Tomorrow I drive myself into work and start on another phase in my project, so I'm feeling pretty darn good about that too.
Whew! I'm tired just typing that. :P This isn't to say that I won't wake up in the morning and not be able to lift my head. Such is the ever shifting line of reality in my new world. But I'll take a good day any day!
Start the week off right. Get up and think about those days that you felt like a superhero...then try to have another one.
Jake
I have so many dear friends. Since our little family unit has covered more than a few states in our 14 years, many of our friends are distant. That makes it difficult sometimes to communicate or offer to help. Some have gone so far as to offer to fly down just to see me or hold my hand while I struggle. These are some of the most amazing offers to me. That I would mean so much to a person that they would get on a plane and plan a trip consisting of multiple days just to be with me for an hour or two, boggles my mind.
This has been offered many times and actually scheduled more than once! I want to say to these people that I'm not worth the time and expense for such a short period of time and a completely uncertain set of circumstances. Depending on when they get here, I may be actively involved in a chemo treatment which can result in a confused, sweaty, falling down, wracked with pain (etc.etc.etc.) Jake. That's not how I want my friends to see me. But I am quickly reminded that it wouldn't matter to them. I'll always be their Jake. I may be fine one minute, involved with conversation or doing something outside of the house...and the next be couch ridden with pain or nausea or something else entirely. To which I am again reminded that it doesn't matter. If a two day visit turns into a 1 hour meeting they have achieved their goals, I've been told. These are amazing people.
I still maintain that, logistically, that is a lot of effort for an uncertain audience with little ol' me. But I've been learning to just go with it. So...if you live down the street or across the country and want to see me, here are the ground rules:
Try to come on a non-chemo week. Your return on investment has much greater odds at being positive.
If you have to come on a chemo week, just be aware that the visits will be short and you need to be prepared to see some demons, because that's when they have their day. It's not a pretty sight and sometimes turns into borderline horror show. It's hard to watch and if you don't want to see me at my worst, stay away from chemo weekend and the first part of chemo week.
Be ok with me passing gas, hocking up ungodly looking stuff from my throat and running to the sink to vomit. These occur daily and I can't control them, well not so much the vomiting...but definitely what sounds like it. If you don't like blood, I'm sorry. A lot of it comes out of my nose and throat. I can't do anything about it, so any uncovered trash can in the house looks like it's been ringside at a boxing match.
I might fall down. I might not be able to get up off the couch, or out of bed. I might be stuck in the bathroom. These are things that can happen at anytime. I can't predict them or control them.
OK...Now that I've scared everyone off...time for a quick status update!
A lot of people have been asking since my last blog post. My answer is this. MUCH better...for the past 48 hours. Friday was a good day at work. I got more accomplished than I was expecting and I got my wife to try Turkish food. :) Saturday was a complete surprise.
I felt really good when I got up that morning. We had planned on having my Dad help take down the unnecessarily large Martha Stewart Christmas tree in our upstairs loft. I felt so good that I took two of the pieces down myself, navigating stairs and hallways and corners all on my own. When my Dad arrived, he had my mother in tow and she was hellbent on cleaning. Everyone was involved in something and all expected nothing from me aside from the occasional wave from the couch. What they got was so much more. I vacuumed the entire house...both floors...including stairs! That's over 2700 sq/ft of carpeted area that I rocked with my (wife's) Dyson. Oh Yeah! Then I helped clean the kitchen and put away boxes in the garage (which required climbing a ladder several times...). And then? I helped hang a curtain. BOOM! SuperJake
Today I didn't feel as good as I did yesterday, but I certainly felt better than earlier in the week.
Tomorrow I drive myself into work and start on another phase in my project, so I'm feeling pretty darn good about that too.
Whew! I'm tired just typing that. :P This isn't to say that I won't wake up in the morning and not be able to lift my head. Such is the ever shifting line of reality in my new world. But I'll take a good day any day!
Start the week off right. Get up and think about those days that you felt like a superhero...then try to have another one.
Jake
Sunday, January 5, 2014
Work
Tomorrow (Monday) is supposed to be my first day physically back at work since before Christmas. And I'm scared as hell. I never know how I'm going to feel when I wake up in the morning. I may be stuck in the bathroom for an hour or over the sink heaving because I didn't eat in time. And when I wake up refreshed and (somewhat) chipper, I may only be that way for an hour before I have to lay down. How does that bode for a dual 40 minute commute and a 4-6 hour day on site (splitting the day between home and office)? With all of the challenges that I go through on a daily basis, how can I possibly go back to work?
Because I have to. I made commitments. To my team, to be there and contribute. To my family, to earn a living and provide. To myself, to get off my ass and start living my life instead of my disease. But ultimately I have no real choice at this point. We are a single income family and the wonderful health insurance that is helping me fight this disease comes from my (awesome) job. Yes, I have sick leave and long term disability...but those are nuclear options. I need to work while I can as long as it doesn't provide a hindrance to my health, my healing, my teammates and most espescially, my family.
The hardest part of this from a mental standpoint is looking at the runway in front of me. I got diagnosed on November 15th. Shortly after we had Thanksgiving holiday. And just a few weeks after that we had Christmas shutdown and I got to stay home for two whole weeks. Now I'm faced with little vacation, precious sick leave and a long barren desert of days off. On the positive side, I'm hoping to develop a routine. On the realistic side, my reality prevents things like routine unless you're talking about pain pills and hydrating.
I know this won't be easy. I get to the parking lot in the morning and my energy tank is already half gone. I still have hours of configurations, planning, meetings and everything else that work entails. And to top it off...a drive home. But it is necessary. It is necessary so that I may live my life and not my cancer's. So that I don't spend day after day steeped in sickness. Yes, those days will be unavoidable. But when you can will them away, if only for a bit, it makes you feel stronger. It makes you feel healthier and more capable.
That's why I have to go back to work even though every fiber of my being is trembling right now. I don't know how tomorrow will go, but regardless of the outcome I will always have the next day to try again.
I talk pretty big don't I? ;) I'm going to try to honor my words and myself with this one.
When faced with an insurmountable challenge that makes you tremble in your boots...find a way to look past it at everything that you gain from confronting it. In this case, I keep my job, meet my commitments and distract myself from what is happening in my gut.
Now if I can just remember that in the morning. *big smile*
Jake
Saturday, January 4, 2014
Accomplishments
Friday didn't start out as a day that I thought would be filled with accomplishments, but in the end it turned out to be a pretty good day.
I know what you're wondering...where are the accomplishments? Well here they are...even though my day started me out on the wrong side of the bed, in the wrong direction and on the wrong foot...I managed to surprise myself.
I've been having well publicized issues with sleeping. I wake up from body pain due to a weird position that I've moved into or I wake up from abdominal pain due to a weird position that I've moved into (or trapped gas...that's another popular one). But I do this probably 10 to 12 times a night that I can verifiably remember. This means that my normal morning routine, getting up at 4:30 to get out of the house by 6, is in serious jeopardy. So I asked my Dr. about some options for sleep management. I also asked him about options for anxiety with my impending "first" review coming up next week. To both quandaries he recommended the same thing...50mg of Benadryl. Yes. My mouth opened just as wide. But, he is a smart man, so at 3:00 Thursday night I took my 25mg (because I was taking it at 3 instead of at bedtime) of Benadryl and my pain pill. I slept until 6...like a rock. Apparently when you lose 35 pounds in 8 weeks, things hit you a bit differently than before. Then I fell back asleep until 6:45 when I woke up drenched in sweat...sheets and all.
At this time I still intended to work. But the Benadryl had different ideas. After spending an hour in the bathroom (non Benadryl related) and a nose bleed that required extensive work to both control and contain, I thought that maybe a half day was in order. I grabbed some breakfast and soon after started passing out wherever I stopped moving. Tami, in her infinite wisdom, suggested that I take a nap. Usually I scoff at these ideas and I really wanted to get a half day of work in. But Tami and the Benadryl won out. After a nice Snoogle assisted nap and a shower, everything was again right with the world. Once I realized that I had slept it out of my system, I visited briefly with my cousin who also has recently been diagnosed with cancer and took another nap. It was then that the day was too far gone to get any work done at all so I called it a full sick day. That's what happens with this thing. Sometimes you're on and sometimes you're not. And you don't get to choose.
I know what you're wondering...where are the accomplishments? Well here they are...even though my day started me out on the wrong side of the bed, in the wrong direction and on the wrong foot...I managed to surprise myself.
I finally got on the exercise bike. I only did 5 minutes and wondered if I would need help down the stairs (which I didn't).
Then I did exercise bands while watching Rick Steve's Europe.
Tami and Myah were out all day with errands so I was on my own. After all the work I had done, for some reason I really wanted a Taco Bell bean burrito. Like more than anything. But the girls were taking too long and I needed something to eat right then and there. It was then that I realized that I had my wallet and a set of car keys. I'm not strapped to the couch. Heck no! So I did it. I went to Taco Bell and ordered 4 bean burritos. Then I came home and ate one. The entire thing.
Then I helped with the laundry and cleaning the kitchen and had a semi full dinner.
Then, at 8:00 pm I had another burrito!
And to top off my late day accomplishments? I finished off the Haagen-Dazs coffee ice cream. Oh yeah.
But the biggest accomplishment? I only lost a pound this week. That's right. I've been losing weight like a mad man, sometimes at the rate of a pound a day. So to lose just one pound in an entire week is huge for me right now. I'm hoping to limit the loss to just one more pound next week...or even gain my pound back! Yeah!
None of these are earth shattering and it would be easy to look at each one and think, "That's all?" Trust me, I do it everyday and everyday I have to remind myself (or Tami has to remind me because I'm too mired in self pity) that these are the things I need to focus on. Each one is a win. Each one is something that I haven't done before in my new reality. Each and every one is important.
So the next time you do something small and seemingly insignificant...delight in it. Take the win, even if it isn't a big one.
(I'll be trying like hell to follow this advice, but I have unrealistically high expectations and will still need Tami's help to get me out of the pity pit from time to time.)
Jake
Then I did exercise bands while watching Rick Steve's Europe.
Tami and Myah were out all day with errands so I was on my own. After all the work I had done, for some reason I really wanted a Taco Bell bean burrito. Like more than anything. But the girls were taking too long and I needed something to eat right then and there. It was then that I realized that I had my wallet and a set of car keys. I'm not strapped to the couch. Heck no! So I did it. I went to Taco Bell and ordered 4 bean burritos. Then I came home and ate one. The entire thing.
Then I helped with the laundry and cleaning the kitchen and had a semi full dinner.
Then, at 8:00 pm I had another burrito!
And to top off my late day accomplishments? I finished off the Haagen-Dazs coffee ice cream. Oh yeah.
But the biggest accomplishment? I only lost a pound this week. That's right. I've been losing weight like a mad man, sometimes at the rate of a pound a day. So to lose just one pound in an entire week is huge for me right now. I'm hoping to limit the loss to just one more pound next week...or even gain my pound back! Yeah!
None of these are earth shattering and it would be easy to look at each one and think, "That's all?" Trust me, I do it everyday and everyday I have to remind myself (or Tami has to remind me because I'm too mired in self pity) that these are the things I need to focus on. Each one is a win. Each one is something that I haven't done before in my new reality. Each and every one is important.
So the next time you do something small and seemingly insignificant...delight in it. Take the win, even if it isn't a big one.
(I'll be trying like hell to follow this advice, but I have unrealistically high expectations and will still need Tami's help to get me out of the pity pit from time to time.)
Jake
Wednesday, January 1, 2014
Differing Perceptions of Courage and Inspiration
I have been writing this blog since the 17th of November and have had a wonderful response to it. Many call it inspirational and courageous. Everyone agrees that my positive attitude is amazing considering the circumstances. In general, even though I deal with some tough issues, I try to leave things in a "feel good", if not just "feel better" state. And I've done a pretty good job at portraying how I feel when I feel positive.
The issue is that my online persona's positivity may be a bit misleading at times. You see, these are snapshots in time and I typically only write them when I have the energy and motivation to. When I have energy and motivation, things are usually pretty good. For those that spend the most time around me, reading my posts and the reality of my situation don't add up. So, while every positive affirmation and silly anecdote is completely sincere, it doesn't paint the full picture.
It doesn't talk about the times when I'm so exhausted that I simply burst into tears. It doesn't talk about the constant pain that I'm in that forces me to lose hope on a daily basis sometimes. It doesn't show the contorted body positions and facial expressions, like going through electric shock therapy, that happen every couple of weeks. These are the times that stick in my caregivers' minds.
The conversations of going off chemo and giving in to palliative care so I can end this sooner and not put everyone through the wringer. The off hand discussions of how they are currently debating Dr. assisted suicide in NM. When my pain pills start losing their effectiveness and I "tough" it out over the next hour because I don't want to change to strength or frequency of a narcotic and I practice lamaze just to tell them that "I'm fine." These are the words that those who are close to me find it hard to reconcile when they read my posts.
Now... am I like this all the time? Of course not. But these times sure do make a bigger impression than others when you have to see them every day. So I can see their points. My caregivers are limited to my loving immediate family right now, so if my wife isn't here my mom or my dad is. These are the people that see the red headed underbelly of this cancer (yup, haven't lost my hair yet). And they are the ones that I want to thank the most for getting me through those times that I can't get up the stairs or can't stop crying or can't get off the couch. Basically, those times that I gloss over with my style of writing.
Of course I want to present the strongest, most positive front possible. I always do that, which is why Tami has to go to my Dr's visits with me, so that she makes sure the real story is told. So maybe I'm a bit less inspirational and courageous sounding in the future. I want to be honest, so there may be some darker things that show up here. If you don't want to read it, filter out everything with the tag "rant" in it. If it's not my usual happy go lucky self I'll make sure to get that tag on there.
Thank you so much for keeping up with the blog. It is a great tool for me to heal, share and inform.
Jake
Tuesday, December 31, 2013
Ice Cream and a Snoogle
Well...it's been a couple of days since I took my fanny pack off and I've taken stock of what the new cocktail means to me.
My abdominal pain isn't gone, but it has evolved. I've had to sleep on a bed wedge that raises my head about 7.5" just to be comfortable in bed for the past two months. The only problem is that I don't sleep on my back well and the wedge keeps you on your back whether you like it or not. So sleep has been elusive. It had gotten so bad that I tried different solutions to sleep and still not wake up in searing pain. One of those was just sleeping in bed like I always have...15 minutes was all I lasted before I was in unbearable pain. The pain comes from my abdomen where all the tumors and atrophied muscles are. They don't like to be stretched and without some sort of support they make it very clear how unhappy they are. My old team at Schreiber Foods surprised me with a get well card and Amazon gift card for Christmas. With that card I bought a Snoogle. We had gotten one for Tami when she was pregnant and she loved it. It really does provide a bunch of different support positions and is pretty darn comfy. So there...I'm buying canes and pregnancy nursing/sleeping pillows. The Snoogle was great but I still couldn't use it because of the abdominal pain caused by the chemo drugs. I'm happy to report that I tried it last night and got the best night sleep that I've had in months. Yay sleep! Another positive change for the new drug.
My neuropathy is definitely gone...for now. That means that I have a ton of options for nutrition that I didn't have for at least a week each time I had previous infusions. How do I get a bunch of calories in a small volume? Ice Cream! I can once again put a nice cold spoonful of wonderfully sweet, creamy goodness in my mouth without feeling like it's full of crawling bugs. Yes! My neuropathy being gone also means that I can touch things that are cold and actually apply pressure with my fingers. This will make getting into work so much easier. I had a heck of a time with our card readers and pin pads before Christmas.
I-Run-To-The-Can is a cruel joke. I was expecting some serious movement in my gut with the switch to Irinotecan. As odd as it sounds, for someone whose had a hard time...um...going for weeks on end, I was actually looking forward to this side effect. The first night it hit as expected, so I went off my Miralax (no need to help it out right) and then it disappeared like a shadow in the night. It's been 3 days since my last...confessional...and Father, I don't feel well at all. I'm back on the Miralax and hope to see something today. I'm pretty sure not too many people pray to God with a little tear in their eye and ask for a good BM.
I've heard a lot of people celebrating the demise of 2013 and hoping that 2014 will be better. No doubt, it hasn't been the best year. I have a bunch of friends and family who have had some pretty crappy things happen to them this past year. Maybe I'm the exception here but, until my diagnosis in November, my year went really well. I got my dream job, a huge raise, a bunch of certifications and got to be closer to my family. Even after my diagnosis, which admittedly put a damper on the end of the year, I found out that I had made a difference in so many peoples' lives that there was an overwhelming outpouring of prayer and positive thoughts. I found new friendships, fostered existing relationships and just saw the beauty of humanity in general. All in all, I think the year turned out pretty good.
When you look back at the year at this time for reflection, look for some of the positive aspects of it instead of the negative. It will help you to determine what to focus on in the new year.
Thank you to everyone who made this year memorable.
Jake
I've heard a lot of people celebrating the demise of 2013 and hoping that 2014 will be better. No doubt, it hasn't been the best year. I have a bunch of friends and family who have had some pretty crappy things happen to them this past year. Maybe I'm the exception here but, until my diagnosis in November, my year went really well. I got my dream job, a huge raise, a bunch of certifications and got to be closer to my family. Even after my diagnosis, which admittedly put a damper on the end of the year, I found out that I had made a difference in so many peoples' lives that there was an overwhelming outpouring of prayer and positive thoughts. I found new friendships, fostered existing relationships and just saw the beauty of humanity in general. All in all, I think the year turned out pretty good.
When you look back at the year at this time for reflection, look for some of the positive aspects of it instead of the negative. It will help you to determine what to focus on in the new year.
Thank you to everyone who made this year memorable.
Jake
Friday, December 20, 2013
Swashbuckling
swash·buck·le
ˈswôSHˌbəkəl,ˈswäSH-/
verb
gerund or present participle: swashbuckling
1.
engage in daring and romantic adventures with ostentatious bravado or flamboyance.It finally happened. I have been too sick to install the Swash 900 and the pain that accompanies my later stages of treatment week finally hit, meaning that it is again painful to...clean up. So I called in the big guns. My Dad. He came in and installed the new seat.
 |
| The Swash 900 in all of it's automated beauty |
The purpose, of course, for the plastic wrap was to observe the proper function of all of the mechanisms without having to actually sit on the thing. The upside is that we would be able to see how tings worked and tinker with settings in a safe and controlled manner. There was one problem with this plan...the seat is pressure sensitive. It won't work unless it senses that there is someone sitting on it. Bummer.
So we did what any good tester would do and we "simulated" a person sitting on the seat. Basically we pressed down really hard with our hands and eventually knees. This worked as long as the pressure was even. If we shifted in the slightest way possible, the seat would beep and shut down. This is a wonderful safety feature now that I think of it. Myah is mildly interested in how the whole thing works and I would be surprised if she tried to show a friend how everything worked while we were in another room. This feature ensures that I don't have a mess to clean up when I hear little girls screaming and giggling.
So how does it work? It's ingenious. Once you sit on the seat it snaps out of eco mode and heats up in less than 2 seconds. It dumps a little water out of the nozzles because that is the water that has gotten cold waiting for the next round and fills them with warm water from the tankless heater in the back of the unit. The seat remembers what your favorite setting is and always maintains those values until you change them. In my case, the water is set on the warmest setting, the nozzle is positioned right where it needs to be and the water pressure and spray width are perfect. Yes, these are all things that you can adjust and customize to your preferences.
When that faithful time comes, you simply pick up the remote (remember, if I'm paying that much for something you plug in, it's going to have a remote) and you have two choices. Rear or Front. Pretty self explanatory. So, once you make your choice, there is some noise from the unit and you can hear the nozzle come out of it's storage location. Then the fun begins. The water that comes out isn't the final temperature that you've set but it only takes a second to get there and it is in no way cold at all. At that point you can change the nozzle position (fore and aft), change the water pressure and temperature (all of which happen instantly) as well as the width of the stream. You can have it pin point or choose a wide option. I go with the wide option.
I haven't had a point where the water stops on it's own yet. I think it times out at 2 minutes, but I manually stop mine before it goes that long. Let me be clear here, this thing feels like nothing else and I may appreciate it a bit too much already, but I'm going to try to keep my relationship with the Swash on a strictly "service provider" level. And for any of you readers who have moderate to severe hemorrhoids, this thing is a Godsend. It has paid for itself in the 18 hours that it's been installed simply for the relief that it has provided in that area alone.
Conclusion? Buy one. You won't regret it. ;)
Go do some swashbuckling this weekend. (and no...it doesn't have to include something that cleans your butt...but...always try to keep your butt clean...I mean that's just obvious isn't it?)
Jake
Friday, December 13, 2013
2 in the bag
I love infusion days. And that is seriously not a joke. I've spent the last two weeks dehydrated and undernourished. In those 2 weeks I've lost almost 9 pounds. I've had good days and bad, ridden this rollercoaster up and down and it's pretty much kicked my ass at will. But on infusion days it all gets better. Sure, I have weird side effects from my chemo drugs, but everything is mixed with saline and dextrose water. Before my infusion days I never have pee that looks normal. It ranges from really dark to oh-my-god-should-I-call-the-doctor dark. On my infusion days, I pee like 5 times while I'm there (that's like 3 days of regular pee) and it progressively looks like it's supposed to. I also feel like a million bucks because I'm hydrated.
But I have a whole new approach for this next two weeks. Timers for hydration (every 15 minutes) and nutrition (every 2 hours). New Boost Very High Calorie drinks for breakfast. (530 calories in just 8 oz of liquid drink!) Chicken thighs already grilled up and ready for eating, half barbeque and half roasted red pepper. Miralax morning and night. A better plan for sleep. It means more meds, but I need to rest. My body requires rest to heal and have a fighting chance in this long and protracted fight.
Today's treatment was good. It was a long day, full of delays. I got to the center at 0715 this morning to check-in. My genetics labs were late but I made that time up with my regular labs. I've gotta say that I really like having a port. It is so much easier than getting stuck each time. The hard part about my labs this morning was giving a urine sample. There was a lot of sipping water and walking around. Once I was able to give my sample, there was just enough time to get down to my Dr's office for my appointment. My Dr was out of town so I saw his PA. After a 30 minute delay there, I headed up to my infusion appointment and was kept waiting another 45 minutes because some of my liver numbers were off which required an extra sign off from the PA. All in all, I showed up at 0715 and was finally released at 1430.
But enough whining...Here is what we learned:
White Count - down a bit but well within normal levels
Liver Bilirubin - Looks good!
Liver Enzymes - All elevated -- This was concerning to everyone, but isn't outside of normal with my particular chemo treatment. The "O" drug is a heavy metal and is hard on the liver. So we'll keep an eye on it.
CEA - Shot way up between last chemo and today. I'll have to followup on that. We didn't have the numbers before we left so I didn't ask while I was there.
Weight - Last visit I was 233 and today I was 224. Like I said, it's all about nutrition and hydration for the next two weeks. I would LOVE see a weight GAIN, but will be more than happy with maintaining my current number or even just losing a couple of pounds this round.
I have a CT scheduled for the first week in Jan. I will get those results on Jan 10th. That will be our first empirical look into whether this is working or not. Hopefully we have good news for the new year. :)
Make a goal of peeing 4-7 times a day. It means that you're properly hydrated. Really, you'll feel so much better.
Jake
But I have a whole new approach for this next two weeks. Timers for hydration (every 15 minutes) and nutrition (every 2 hours). New Boost Very High Calorie drinks for breakfast. (530 calories in just 8 oz of liquid drink!) Chicken thighs already grilled up and ready for eating, half barbeque and half roasted red pepper. Miralax morning and night. A better plan for sleep. It means more meds, but I need to rest. My body requires rest to heal and have a fighting chance in this long and protracted fight.
Today's treatment was good. It was a long day, full of delays. I got to the center at 0715 this morning to check-in. My genetics labs were late but I made that time up with my regular labs. I've gotta say that I really like having a port. It is so much easier than getting stuck each time. The hard part about my labs this morning was giving a urine sample. There was a lot of sipping water and walking around. Once I was able to give my sample, there was just enough time to get down to my Dr's office for my appointment. My Dr was out of town so I saw his PA. After a 30 minute delay there, I headed up to my infusion appointment and was kept waiting another 45 minutes because some of my liver numbers were off which required an extra sign off from the PA. All in all, I showed up at 0715 and was finally released at 1430.
But enough whining...Here is what we learned:
White Count - down a bit but well within normal levels
Liver Bilirubin - Looks good!
Liver Enzymes - All elevated -- This was concerning to everyone, but isn't outside of normal with my particular chemo treatment. The "O" drug is a heavy metal and is hard on the liver. So we'll keep an eye on it.
CEA - Shot way up between last chemo and today. I'll have to followup on that. We didn't have the numbers before we left so I didn't ask while I was there.
Weight - Last visit I was 233 and today I was 224. Like I said, it's all about nutrition and hydration for the next two weeks. I would LOVE see a weight GAIN, but will be more than happy with maintaining my current number or even just losing a couple of pounds this round.
I have a CT scheduled for the first week in Jan. I will get those results on Jan 10th. That will be our first empirical look into whether this is working or not. Hopefully we have good news for the new year. :)
Make a goal of peeing 4-7 times a day. It means that you're properly hydrated. Really, you'll feel so much better.
Jake
Wednesday, December 11, 2013
Stop letting myself be sick
I had a horrible night last night. I've been having these ultra realistic "waking dream" events in bed that completely mess with my head. Last night was particularly bad. For some reason I was stuck in bed...in Texas. And everyone wanted to see me. There was a BBQ downstairs and people (friends, family and strangers) kept coming upstairs for a visit. The problem was that I was in so much pain and unable to move that it was like my own personal hell. No one listened, no one helped. Everyone just said that they were so sorry for me. This translated into an actual and very intense pain in my back. I don't know if it was tensed up for the hour or so that I was "asleep" before Tami got into bed, but it was excruciating. I don't remember the events really clearly, but I remember being in tears and saying that I was just so tired of hurting. Tami rubbed my back for about 10 or 15 minutes and talked me down (again). By the time that she was done I felt exponentially better and my mind wasn't trying to kill me. Then I slept soundly for 3 straight hours. Just another reason she is my hero.
Each day can be a struggle for me. Sleep doesn't come easy, my body hurts (despite a constant stream of prescribed narcotics) and I'm generally exhausted all the time. So how do we overcome these challenges? Stop letting myself be sick. Easier said than done right? But I've found that doing just that puts me in a better mood and makes me feel better. After last night I didn't feel all that great this morning. It took me an hour to get out of bed and I stayed in the shower until the water ran cool. I had to take a nap during a 15 minute break in my training class (thankfully it's virtual, so I'm in my sweat pants and the nap was on my couch). But during the lunch break I decided that I was tired of being sick. So I went outside with the dog. She watched me do squat thrusts across my patio...twice. Then I did some calf raises. I was out of breath but I felt like I could breathe more effectively. My legs were shaky and weak, but I knew it was because I was pushing them, not because they were slowly dying on me. And it all made me feel so much better.
Now, an hour later, I've eaten an entire Marie Calendar's Turkey Pot Pie. I also still feel better. So much so that I think I'll ride my exercise bike during the next break. And, if I have energy, maybe I'll spend some time with the bands tonight in front of the TV instead of having my legs kicked up on the couch with an iPad on my lap. And if I do all of this...maybe, just maybe I'll sleep a little bit better tonight.
Now, I know...I know. I can't do this everyday. My new reality starts and restarts every hour. I may not be able to push myself tomorrow, or even tonight. But I'm tired of feeling sick and from now on, I intend to try to shift that balance in my favor as much as I can.
Push yourself today. It doesn't have to be physically. Maybe you haven't done something because fear is getting in your way, or you've been putting something off because there isn't enough time. Stop making excuses and test your limits. And when you find them...push through them.
Jake
Each day can be a struggle for me. Sleep doesn't come easy, my body hurts (despite a constant stream of prescribed narcotics) and I'm generally exhausted all the time. So how do we overcome these challenges? Stop letting myself be sick. Easier said than done right? But I've found that doing just that puts me in a better mood and makes me feel better. After last night I didn't feel all that great this morning. It took me an hour to get out of bed and I stayed in the shower until the water ran cool. I had to take a nap during a 15 minute break in my training class (thankfully it's virtual, so I'm in my sweat pants and the nap was on my couch). But during the lunch break I decided that I was tired of being sick. So I went outside with the dog. She watched me do squat thrusts across my patio...twice. Then I did some calf raises. I was out of breath but I felt like I could breathe more effectively. My legs were shaky and weak, but I knew it was because I was pushing them, not because they were slowly dying on me. And it all made me feel so much better.
Now, an hour later, I've eaten an entire Marie Calendar's Turkey Pot Pie. I also still feel better. So much so that I think I'll ride my exercise bike during the next break. And, if I have energy, maybe I'll spend some time with the bands tonight in front of the TV instead of having my legs kicked up on the couch with an iPad on my lap. And if I do all of this...maybe, just maybe I'll sleep a little bit better tonight.
Now, I know...I know. I can't do this everyday. My new reality starts and restarts every hour. I may not be able to push myself tomorrow, or even tonight. But I'm tired of feeling sick and from now on, I intend to try to shift that balance in my favor as much as I can.
Push yourself today. It doesn't have to be physically. Maybe you haven't done something because fear is getting in your way, or you've been putting something off because there isn't enough time. Stop making excuses and test your limits. And when you find them...push through them.
Jake
Wednesday, December 4, 2013
Happy Birthday To Me
I've had a lot of success in the last two days.
Yesterday --
It also gives me a welcome distraction from the ever present reality that is battling it out in my abdomen. When I'm at home "resting", I have way too much time on my hands and far too many reminders that I'm going through some serious shit right now. The unknown is plentiful, so being able to take part in an activity that gives you some solid ground to stand on is remarkably rejuvenating.
It's good for Tami too. Let's face it...I'm not going through this alone. My wife has borne the brunt of the late night feedings and repositionings, the almost constant coughing and moaning that plague me when I'm prostrate for too long. This lets her live her life...without me in the background or in the passenger's seat. That's my hope anyway. To give each of us an oasis in this big, arid desert full of tumors and poison and bad news. We need some time to heal each day and I intend to keep this up as long as humanly possible.
I didn't meet my calorie goal today, and I don't care. Close does count in this game. It counts enough for me anyway. As long as I feel good and I'm still on my feet, I'm going to strive for my goals, but I'm through being disappointed when I miss them by a sliver.
I was going to post about my genetics appointment...but I've decided against it. There are some really interesting things there, but very little helpful information and not a lot of hope for anything more useful on the way. So, no point unless you're a stats professor.
I got what I asked for for my birthday and I'm going to use it first thing in the morning. A nose and ear hair trimmer. Yup. There are some truly epic things growing out of those places and I've decided that you're never too young to tidy them up. I forgot to order the other thing that I wanted for my birthday. A chemo shirt. Yes they exist and yes they look like awesome sauce! So I intend to do that before I nod off for the night.
Cuddle with someone/something special tonight.
Jake
* In reference to my atrophied rear-end, this is something I'm really bummed (giggle...bummed...he he), but super motivated about. I've always been very proud of my butt. Firm, well-shapen and highly grab-able. Indeed, it has been the object of desire for many and a source of envy for many more. And it's almost gone.
I noticed last week that sitting on a hard surface was becoming increasingly uncomfortable. It felt like my sits bones were coming right through my skin. I didn't make too much of it at first but then I caught a sideways glance of myself in a full length mirror just before getting in the shower this morning. I was shocked, horrified and confused. My beautiful bum was flat as a board. (Hanging head and sobbing slightly) But what could I expect after nearly a month of incredibly limited movement? It's like I'm one of those guys they pay to spend a summer in bed to study the effects of space flight without actually sending someone to space. But I'm not getting paid for this. *sad face*
I say that it's a super source of motivation because I refuse to let this one go. I will get it back, starting tomorrow. Each day that I feel well enough I am going to walk stairs and spend time on my recumbent bike (in a trainer in my office). Those are sure to get my blood pumping and my muscles building. Yes, I will overdo it and Tami will help me recalibrate and we'll do it again. Remember, I have a new set of limits every time I wake up. Sometimes they're good, sometimes they suck. I'll work with it though. And I will get my butt back.
Yesterday --
- It was my birthday, so I officially made it to 36
- I went to work for almost an entire day! While there I:
- Unpacked a server
- Attended a meeting
- Opened a couple tickets to improve a workspace that we have
- Made some headway on a project that was waiting for me
- I ate OVER my (self) allotted 2055 calories for the day (sure it was only by 27 calories, but OVER!!! W00T W00T)
- In a single sitting I ate an entire ItsaBurger. YUM!
- I took the day off to "observe" my birthday (long story and I'm too tired)
- Helped Tami with something important (not an invalid yet...not by a long shot)
- Put together a stand for side tables (repeat the invalid comment here...)
- Went to a Genetics appointment
- Celebrated my birthday with my wonderful family and my amazing parents who brought roast beef and Italian asparagus
- Capped the night off with a piece of red velvet cake
It also gives me a welcome distraction from the ever present reality that is battling it out in my abdomen. When I'm at home "resting", I have way too much time on my hands and far too many reminders that I'm going through some serious shit right now. The unknown is plentiful, so being able to take part in an activity that gives you some solid ground to stand on is remarkably rejuvenating.
It's good for Tami too. Let's face it...I'm not going through this alone. My wife has borne the brunt of the late night feedings and repositionings, the almost constant coughing and moaning that plague me when I'm prostrate for too long. This lets her live her life...without me in the background or in the passenger's seat. That's my hope anyway. To give each of us an oasis in this big, arid desert full of tumors and poison and bad news. We need some time to heal each day and I intend to keep this up as long as humanly possible.
I didn't meet my calorie goal today, and I don't care. Close does count in this game. It counts enough for me anyway. As long as I feel good and I'm still on my feet, I'm going to strive for my goals, but I'm through being disappointed when I miss them by a sliver.
I was going to post about my genetics appointment...but I've decided against it. There are some really interesting things there, but very little helpful information and not a lot of hope for anything more useful on the way. So, no point unless you're a stats professor.
I got what I asked for for my birthday and I'm going to use it first thing in the morning. A nose and ear hair trimmer. Yup. There are some truly epic things growing out of those places and I've decided that you're never too young to tidy them up. I forgot to order the other thing that I wanted for my birthday. A chemo shirt. Yes they exist and yes they look like awesome sauce! So I intend to do that before I nod off for the night.
Cuddle with someone/something special tonight.
Jake
* In reference to my atrophied rear-end, this is something I'm really bummed (giggle...bummed...he he), but super motivated about. I've always been very proud of my butt. Firm, well-shapen and highly grab-able. Indeed, it has been the object of desire for many and a source of envy for many more. And it's almost gone.
I noticed last week that sitting on a hard surface was becoming increasingly uncomfortable. It felt like my sits bones were coming right through my skin. I didn't make too much of it at first but then I caught a sideways glance of myself in a full length mirror just before getting in the shower this morning. I was shocked, horrified and confused. My beautiful bum was flat as a board. (Hanging head and sobbing slightly) But what could I expect after nearly a month of incredibly limited movement? It's like I'm one of those guys they pay to spend a summer in bed to study the effects of space flight without actually sending someone to space. But I'm not getting paid for this. *sad face*
I say that it's a super source of motivation because I refuse to let this one go. I will get it back, starting tomorrow. Each day that I feel well enough I am going to walk stairs and spend time on my recumbent bike (in a trainer in my office). Those are sure to get my blood pumping and my muscles building. Yes, I will overdo it and Tami will help me recalibrate and we'll do it again. Remember, I have a new set of limits every time I wake up. Sometimes they're good, sometimes they suck. I'll work with it though. And I will get my butt back.
Saturday, November 30, 2013
Perspective
This has been a hard one for me lately. Time and reason head right out the door at 2 in the morning when the rest of the house is asleep and you're still in pain and trying to find some way to catch the sandman with or without the benefit of pharmaceuticals. Your mind starts heading to the dark side and arbitrarily measuring your current state of success or failure. These are all false measure of course, but really...at that moment there is nothing as real as the little voice in your head. I've had a couple of really challenging days. Side effects of chemo, pain from multiple surgeries, well publicized issues with eating and hydrating and a nagging cough that has me convinced that it will tun into pneumonia at any minute all conspire against rational thought and a healthy perspective.
So, why is it so hard? Because I feel like shit. My body hurts, nothing works right and I pretty much totally under-prepared for the lack of energy and strength that I am currently faced with. And I'm an eternal optimist with sometimes, unrealistic expectations. These were the expectations that I laid out for this weekend:
Thanksgiving - The official day-after day for my main infusions and my first 24 hours with my fanny pack of power. This day was hard. Really hard. I was so tired that I didn't hydrate enough and I missed several mini-meals prior to the turkey and gravy. My parents brought over the food and Tami and Myah went to her sister's house for dinner. So it was my parents and I, just like the good ol' days. Except that I crashed around 3. I ate too much dinner after I realized that I hadn't eaten anything earlier in the day. That night was a disaster and textbook for what not to do. I spent the rest of the evening dry heaving (because of chest congestion, not nausea) and trying to find some semblance of peace so that I could sleep.
Black Friday - My last day with the poison being pumped into my chest. Tami was amazing. She disconnected everything, flushed my port, removed the needle from my chest and held me up as I got so dizzy I almost fell down. It was a celebratory day because I could finally sleep in bed...only I couldn't really. I was still reeling from the miscalculations of the previous day (it's a one step forward, 5 steps backward thing when you don't do it right) and I refused to take a pain med before bed time. I was just looking forward to my bed. It was a 3 hour exercise in patience and determination to actually get to sleep after that...with the help of a pain med. Ya ya, I know. That's what they're there for. I'm starting to realize that more and more.
Today - A much better day overall, but still challenging. In the lows of the past two days I forgot to take my Miralax. Combine that with my increased usage of pain meds and you have one stopped up Jake. And that just adds to my abdominal pain, which now "refers" up to my shoulder thanks to my biopsy site. So I haven't had enough to eat today, but I'm drinking more. I would much rather be hydrated and under calories than the other way around. I've had too much of that this week. On the positive side though, I spent more time outside soaking up the sun today than I have in the past couple of weeks. It was a beautiful day, and I actually made it out to the mailbox with Tami. Win. :)
We'll see what tomorrow brings. I've been getting really dizzy lately and we are trying to determine the exact cause (literally everything I'm on lists dizziness as a side effect). I'm hoping that it's the Zofran which I've taken myself off of (no issues with nausea) this morning. The big consequence of this is that I can't drive if I randomly experience vertigo. So I can't get to work. I've worked out several contingencies with options to work from home as much as I can, so it's nothing that I can't overcome. I just want to know what keeps turning my world upside down.
As I try to get back to some kind of routine, I don't know how much I will be posting. I'm going to shoot for every 2 to 3 days depending on how I feel and how much I have to say.
Be nice to someone you don't know. It really does feel good. :)
Jake
So, why is it so hard? Because I feel like shit. My body hurts, nothing works right and I pretty much totally under-prepared for the lack of energy and strength that I am currently faced with. And I'm an eternal optimist with sometimes, unrealistic expectations. These were the expectations that I laid out for this weekend:
- Chemo wouldn't kick my ass too bad and I would be able to function fairly normally
- Chemo would start making it easier to eat by shrinking the tumors in my liver
- My liver biopsy site would heal quickly and generally not bother me
- My port site(s) would heal quickly and generally not bother me
- Working with a strict schedule to ration food and liquids throughout the day would result in an effective means to meet my nutritional goals by the end of this week
- There is no possible way to predict how a first time chemo treatment (or even subsequent ones for that matter) will impact you. Counting on a certain outcome (vs just hoping for one) is a foolhardy exercise. It's also demoralizing when you expect the best and get knocked on your rear instead.
- This is the ultimate goal...it should NOT be considered an immediate one. This one slipped by though. Even in conversations with my family and doctors I set the bar further out, looking at 3 o 4 treatments before I could really feel any change. But my internal goal setter blatantly ignored all of that and prepared for immediate improvement. Talk about a disconnect right? It's like I've got congress in my head, saying one thing and then doing something absolutely stupid and contrary to reality.
- I'm going to combine the next two bullets (for those interested in symmetry...this is the reason the number of bullets won't match up). It has been less than a week since I had several "plugs" removed from my liver and it's tumors. That same time frame applies to the fact that I have small alien structure in my chest, connected to a catheter that has been stitched into my jugular. These need time to heal, especially when you consider that my chemo treatments actively prevent things from healing at normal rates. So it hurts when I cough and I fear that I'm going to bust my jugular wide open when I'm trying to hack something up from the depths of my lungs. I need to make peace with the fact that this will be the case for at least another week or two.
- When you're dealing with something so foreign and alternate than any other reality that you've ever dreamed up, it's hard to predict things. Schedules are great, but they fall apart quickly when you can't lift your head to take a drink, or when putting something in your stomach is the last thing that you want to do on earth. I still feel that this goal shouldn't change much though. It is going to be key that I take in the proper amount of liquids, calories and protein to help my body heal. This is really important. The time frame will shift, but the goal will remain the same.
Thanksgiving - The official day-after day for my main infusions and my first 24 hours with my fanny pack of power. This day was hard. Really hard. I was so tired that I didn't hydrate enough and I missed several mini-meals prior to the turkey and gravy. My parents brought over the food and Tami and Myah went to her sister's house for dinner. So it was my parents and I, just like the good ol' days. Except that I crashed around 3. I ate too much dinner after I realized that I hadn't eaten anything earlier in the day. That night was a disaster and textbook for what not to do. I spent the rest of the evening dry heaving (because of chest congestion, not nausea) and trying to find some semblance of peace so that I could sleep.
Black Friday - My last day with the poison being pumped into my chest. Tami was amazing. She disconnected everything, flushed my port, removed the needle from my chest and held me up as I got so dizzy I almost fell down. It was a celebratory day because I could finally sleep in bed...only I couldn't really. I was still reeling from the miscalculations of the previous day (it's a one step forward, 5 steps backward thing when you don't do it right) and I refused to take a pain med before bed time. I was just looking forward to my bed. It was a 3 hour exercise in patience and determination to actually get to sleep after that...with the help of a pain med. Ya ya, I know. That's what they're there for. I'm starting to realize that more and more.
Today - A much better day overall, but still challenging. In the lows of the past two days I forgot to take my Miralax. Combine that with my increased usage of pain meds and you have one stopped up Jake. And that just adds to my abdominal pain, which now "refers" up to my shoulder thanks to my biopsy site. So I haven't had enough to eat today, but I'm drinking more. I would much rather be hydrated and under calories than the other way around. I've had too much of that this week. On the positive side though, I spent more time outside soaking up the sun today than I have in the past couple of weeks. It was a beautiful day, and I actually made it out to the mailbox with Tami. Win. :)
We'll see what tomorrow brings. I've been getting really dizzy lately and we are trying to determine the exact cause (literally everything I'm on lists dizziness as a side effect). I'm hoping that it's the Zofran which I've taken myself off of (no issues with nausea) this morning. The big consequence of this is that I can't drive if I randomly experience vertigo. So I can't get to work. I've worked out several contingencies with options to work from home as much as I can, so it's nothing that I can't overcome. I just want to know what keeps turning my world upside down.
As I try to get back to some kind of routine, I don't know how much I will be posting. I'm going to shoot for every 2 to 3 days depending on how I feel and how much I have to say.
Be nice to someone you don't know. It really does feel good. :)
Jake
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