I'm tired...
Tired of feeling spent after just half a day at work,
Tired of not sleeping through a single night,
Tired of daily bloody noses,
Tired of food being my enemy instead of the friend I once knew,
Tired of the rash that's taken over my stomach and is slowly crawling up my chest,
Tired of the darkness that invades the good times and tries to subvert hope and light,
Tired of pity,
Tired of falling over because my equilibrium is shot,
Tired of ending up on the floor doubled over in pain (like this morning) that won't go away,
Tired of Chemo,
Tired of the tears,
Tired of the drugs,
I'm just so tired...
This afternoon I slept for a couple of hours after I (thankfully) made it home from work. I got almost no sleep last night due to major abdominal pain and cramping. Unfortunately, each time I woke up and thought..."I should take something for this...", I would fall asleep again. It forced me to go in to work late this morning and move some things around. Thankfully, the short time I was at work was productive, but it was short lived.
The rash on my stomach is an allergic reaction to my blood thinner injections. It's listed in the documentation for the drug and should be mostly harmless...but incredibly frustrating. Almost all of my injection site options are now covered by a thick, pink continent that itches really really badly. And worst of all...it's taken up residence in my belly button. Oh the humanity! Now we have to find new injection spots where Tami will have to handle giving me the shots.
We have multiple scans tomorrow and chemo #10 on Friday. I start the day off with an MRI then, after a couple of hours to fast and drink water, I have two different CT scans. I'm not a huge fan of IVs now that I have my port, but I don't want to add an extra day to the weekend that my port IS accessed, so I'll have to make due. I get the results of these scan on Friday when I see the Dr before my chemo. I'm hoping beyond hope that I don't have yet another reaction to the Zaltrap. We'll see how it goes.
In good news...I haven't lost any more weight. This is something that I should be yelling from the rafters while jumping up and down. The fact is...I'm just not that excited right now. I'm too tired to smile and pat myself on the back and celebrate. All I want to do is go to bed and wait for my gut to stop hurting.
*sigh* This isn't really a positive note, but it reflects how I've been doing over the past couple of weeks. Ups and downs, with what seems like more downs than the other.
Tomorrow is a new day. It really is a new opportunity to make it a great day. I'll try to keep that in mind.
Jake
Showing posts with label Rant. Show all posts
Showing posts with label Rant. Show all posts
Wednesday, April 2, 2014
Monday, March 17, 2014
Changing tastes and more unforseen events
As I've mentioned briefly in the past, the way I perceive taste is changing. I don't mean a slow and purposeful evolution like the fact that I hated curry when I was a child and I love it now...I'm talking about a scattered and dynamic timeline where one minute you taste something and the next you taste something else. The issue is that those different tastes are elicited by the same food/drink in your mouth. This is getting pretty darn obnoxious. Especially considering that some of the flavors that erupt in my mouth, make the food inedible.
This is a particular issue since I need to be eating as much as I possibly can right now. Case in point: Malt-O-Meal that tastes like onions, Sun Tea that tastes like fuel or anything slightly salty or sweet having their flavors exponentialized (yes, I made that word up...) to the point tht I have to spit them out. This is a problem. The only thing that I can reliably eat is Rice Chex. Good yes. Nutritious no. Source of protein...8 grams per 8oz of Vitamin D Whole Milk unless I add protein powder (which I need to need to start this week).
It is very bothersome when people ask me what they can cook for me now, because I have to tell them that I don't know. Something that I ate yesterday could make me nauseous today or something I ate for lunch may ruin my tongue for anything I eat later. It is a crappy side effect of one of my drugs...which one? I don't know, I lost count in my growing list of side effects. Crappy yes, but thankfully the unexpected nature is now, pretty much expected...unlike an arm that spontaneously no longer works.
The Arm...
On Thursday night of this week my left arm failed me. I first noticed at dinner when I went to drain a medium sized pot of noodles, a task I've always accomplished with my left arm without incident. This time the pot seemed abnormally heavy. Heavy enough to necessitate two hands to go from stove to sink to strainer. At the time I thought how emasculating this disease was and how much muscle I must have lost in my upper body.
After dinner I transferred the left over noodles to a container and picked up the now empty pot, again with my left hand...call it habit, and the empty pot was just as heavy as the full pot. My arm had lost so much lifting power in the space of less than an hour that I had to use two hands to carry the pots and pans to the sink and had to get creative to actually get them clean.
The girls had a school function that they were attending and I didn't want to bother them while they were having fun (Literacy Night...Myah loves going to those things). So I sat and looked up loss of strength and sensation in the arms. Mind you, my right arm was doing just fine. After a bit of reading, I had a list of potential culprits: stroke, blood clot, heart attack or aneurism.
As the night wore on, my arm got worse and I started ruling out the potentials. Can't be a stroke because my grip strength in that hand was just as good as my right side, I wasn't slurring my speech, nothing was drooping on my face and I could walk just fine with no loss of sensation or strength in my left leg. Can't be a heart attack because I wasn't feeling any pain or tightness in my left side or my chest. Could be a blood clot that had developed or moved up from my leg (I actually got this theory later from my brother-in-law nurse who was awesome at triaging me after the girls got home) but I hadn't felt it anywhere else on it's journey, so unlikely. Aneurism. This is the one that I was the most concerned about because I saw it as the most plausible. I have been having right side headaches for weeks now that are near migraine level but haven't actually become debilitating yet. At this point, this is the most compelling argument for my uneducated mind.
So naturally, I freak out. I spend the rest of the night trying to "feel" my left bicep which, by this time, has ceased responding to anything. I can't even make it flex...well...what's left of it. (giggle...left...he he...get it? the left arm...what's LEFT of it...*sigh* sometimes I'm the funniest guy in my head) And then the girls get home. I've been weeping and trying to distract myself with Irish dancing montages for the past 2 hours. Tami calls the reinforcements. Have I told you that I absolutely love her? Well I do. She gets a hold of her sister's husband Drew. Despite the differences we share, I think that he is a great nurse and he sure talked us off a ledge that night. We went through all of the questions and then Tami brought up something that I had forgotten until right before they got back from the school. Acupuncture.
I had an acupuncture appointment earlier that day. Nothing special, and one that I've had a few times now (for those who need actual number correlations, here is how I use those terms...and yes, I know that Merriam Webster doesn't agree with me: Couple=2, Few=3-5, Several=5 or more). This fact gave us all a moment to pause and rethink the issue. It is highly possible that a nerve could've been hit and had that impact. Since I had the treatment on both arms and the right arm wasn't having any problems we decided to wait until morning.
The plan? If I woke up and it was gone, it was from the acupuncture. If it was still there, go to the ER. Thankfully it was gone and I headed off to work for the day. These are the things that happen in any given week, on any given day, that make me hate this ride. It's the worst haunted house ever. Every corner has a new surprise jumping out at you. The only difference for me is that each one of those surprises has the potential to kill me. Ugh! And I can't even enjoy a churro while I'm waiting for the guy with the knife or the train painted on the wall coming straight at me. I'm done with ride and I'm ready to get off now.
At this point, it seems like anything new is too much and my body tries to find new and inventive ways to make me think that I'm going to die sooner rather than later. Which is why I've stalled on taking my new weight gain drug. I don't want to introduce anything new to my system, especially one with so many common side effects with my chemo drugs, with the only difference being that I should call a Dr if I experience them while on the new drug. Great...take this new drug, but call the Dr if you experience all of the things that you already are. Super.
The ER...
For those keeping track, that was Thursday night. On Friday I got home and started to take my pants off in exchange for the comforting allure of sweatpants. I was then informed that Tami's mother was being taken to the ER after seeing the Dr about some abdominal pain after a fall she had the week before. Because of a poorly worded Dr's order and a well intentioned but completely idiotic dispatcher/controller she got transferred via ambulance from the nice, quiet, clean and totally non-busy Presbyterian ER where she was already parked at on the east side (her Dr's office is in the adjoining building) to the absolutely packed and nuts-with-homeless-people-shooting-up-in-the-bathroom ER downtown. All of the facilities she needed were in a place that would have seen her in and out in 3-4 hours. Instead she was made to wait hours to occupy a hospital bed for another several hours for the same services. Deplorable.
But where do I and my pants come in? When Tami tells me about the situation and I see a family member in need and decide to help. Tami asked if I had the energy for it, for which my response was (in, what I remember being, a very superhero like tone), "If it's family there isn't any question. We go." How cool am I right? Take that Captain Hammer! Deciding to leave my Superman robe at home, we jump in the car and head to the most likely place that she would be (no one told us that she had been transferred downtown instead of across a walkway until after we got there), the ER where she was already with her Dr.
She's not here...That was the answer that we got time and again when we asked about where she might be all over the ER on the east side. Then we get the news (from Tami's sister instead of the hospital that SHOULD be able to tell us) we race downtown. After getting there and learning that she had been sent for labs we took up a spot in the waiting room and I donned a mask immediately. After a short time she got wheeled out and told to to wait for a room. 2 hours later she was called back. Tami and her sister went back with her and I waited and watched as helicopter after helicopter dropped new patients off and people of all types use the bathrooms by the entrance for a "variety" of reasons.
An hour after that Tami's sister had to go home to take care of her little one and Tami and I elected to stay. I went back to the room and we waited. She had already seen the Dr and received orders for a CT with contrast and pain meds. The waiting went on for another hour until I went out and asked about it.
Tech: Who's your nurse?
Me: We haven't even seen a nurse.
Nurse: (flushed and overworked) It's me. I'm so sorry for the miss. I'll be right there.
Me: (Steaming) Thank you...
The nurse's name was Pete, and to his credit he was a great guy and a wonderful nurse. But it was more unnecessary pain and waiting for Tami's mom. By the time she got to go to CT it was past 10pm. Her original appointment was at 2pm, so she had already hit the 8 hour mark. We were going on 6 ours with little to eat and a (albeit superheroish kinda guy) cancer patient who starts to wave the flag around 6pm every night. But I had coffee in my veins (that I would later learn was decaf...thank you placebo effect...) and a Mom to take care of. Just before she had gone to CT, Tami and I drove our car up to the ER on the east side and drove it back downtown so we could take her home and still sleep in our own beds.
The GOOD news is that it wasn't anything really threatening like internal bleeding or a lacerated organ. Just some things we have to monitor for awhile. They gave us the go for discharge. It was like seeing the checkered flag. I wanted to jump up and down and drink a quart of milk. We got out of the ER just after midnight and started our trek to Edgewood. We dropped her off at her house around 1:30 on Saturday morning and headed home ourselves. We finally got home just before 2:30 and relieved my Dad who had so awesomely taken care of Myah during this circus.
Ah sleep...at least it was the weekend and I had a wonderful visit to look forward to with two longtime friends. That is a story for another blog post...but suffice it to say...with my Friday being crazy and energy consuming and a full weekend of visitors, I had to take today off because my energy was sapped to the point that some unknown force made me sit on the couch and watch TV. Finally caught up on Season 6 of the Guild and started at the beginning of one of my favorite business trip shows...Burn Notice. I'll be going straight through on that one over the next few months. :)
It is late and Tami is already looking at me with those I-told-you-not-to-start-a-blog-after-8pm eyes. So you'll have to read about my awesome weekend later.
Know when to hold 'em, know when to fold 'em and know when to walk away.
Until next time...
Jake
This is a particular issue since I need to be eating as much as I possibly can right now. Case in point: Malt-O-Meal that tastes like onions, Sun Tea that tastes like fuel or anything slightly salty or sweet having their flavors exponentialized (yes, I made that word up...) to the point tht I have to spit them out. This is a problem. The only thing that I can reliably eat is Rice Chex. Good yes. Nutritious no. Source of protein...8 grams per 8oz of Vitamin D Whole Milk unless I add protein powder (which I need to need to start this week).
It is very bothersome when people ask me what they can cook for me now, because I have to tell them that I don't know. Something that I ate yesterday could make me nauseous today or something I ate for lunch may ruin my tongue for anything I eat later. It is a crappy side effect of one of my drugs...which one? I don't know, I lost count in my growing list of side effects. Crappy yes, but thankfully the unexpected nature is now, pretty much expected...unlike an arm that spontaneously no longer works.
The Arm...
On Thursday night of this week my left arm failed me. I first noticed at dinner when I went to drain a medium sized pot of noodles, a task I've always accomplished with my left arm without incident. This time the pot seemed abnormally heavy. Heavy enough to necessitate two hands to go from stove to sink to strainer. At the time I thought how emasculating this disease was and how much muscle I must have lost in my upper body.
After dinner I transferred the left over noodles to a container and picked up the now empty pot, again with my left hand...call it habit, and the empty pot was just as heavy as the full pot. My arm had lost so much lifting power in the space of less than an hour that I had to use two hands to carry the pots and pans to the sink and had to get creative to actually get them clean.
The girls had a school function that they were attending and I didn't want to bother them while they were having fun (Literacy Night...Myah loves going to those things). So I sat and looked up loss of strength and sensation in the arms. Mind you, my right arm was doing just fine. After a bit of reading, I had a list of potential culprits: stroke, blood clot, heart attack or aneurism.
As the night wore on, my arm got worse and I started ruling out the potentials. Can't be a stroke because my grip strength in that hand was just as good as my right side, I wasn't slurring my speech, nothing was drooping on my face and I could walk just fine with no loss of sensation or strength in my left leg. Can't be a heart attack because I wasn't feeling any pain or tightness in my left side or my chest. Could be a blood clot that had developed or moved up from my leg (I actually got this theory later from my brother-in-law nurse who was awesome at triaging me after the girls got home) but I hadn't felt it anywhere else on it's journey, so unlikely. Aneurism. This is the one that I was the most concerned about because I saw it as the most plausible. I have been having right side headaches for weeks now that are near migraine level but haven't actually become debilitating yet. At this point, this is the most compelling argument for my uneducated mind.
So naturally, I freak out. I spend the rest of the night trying to "feel" my left bicep which, by this time, has ceased responding to anything. I can't even make it flex...well...what's left of it. (giggle...left...he he...get it? the left arm...what's LEFT of it...*sigh* sometimes I'm the funniest guy in my head) And then the girls get home. I've been weeping and trying to distract myself with Irish dancing montages for the past 2 hours. Tami calls the reinforcements. Have I told you that I absolutely love her? Well I do. She gets a hold of her sister's husband Drew. Despite the differences we share, I think that he is a great nurse and he sure talked us off a ledge that night. We went through all of the questions and then Tami brought up something that I had forgotten until right before they got back from the school. Acupuncture.
I had an acupuncture appointment earlier that day. Nothing special, and one that I've had a few times now (for those who need actual number correlations, here is how I use those terms...and yes, I know that Merriam Webster doesn't agree with me: Couple=2, Few=3-5, Several=5 or more). This fact gave us all a moment to pause and rethink the issue. It is highly possible that a nerve could've been hit and had that impact. Since I had the treatment on both arms and the right arm wasn't having any problems we decided to wait until morning.
The plan? If I woke up and it was gone, it was from the acupuncture. If it was still there, go to the ER. Thankfully it was gone and I headed off to work for the day. These are the things that happen in any given week, on any given day, that make me hate this ride. It's the worst haunted house ever. Every corner has a new surprise jumping out at you. The only difference for me is that each one of those surprises has the potential to kill me. Ugh! And I can't even enjoy a churro while I'm waiting for the guy with the knife or the train painted on the wall coming straight at me. I'm done with ride and I'm ready to get off now.
At this point, it seems like anything new is too much and my body tries to find new and inventive ways to make me think that I'm going to die sooner rather than later. Which is why I've stalled on taking my new weight gain drug. I don't want to introduce anything new to my system, especially one with so many common side effects with my chemo drugs, with the only difference being that I should call a Dr if I experience them while on the new drug. Great...take this new drug, but call the Dr if you experience all of the things that you already are. Super.
The ER...
For those keeping track, that was Thursday night. On Friday I got home and started to take my pants off in exchange for the comforting allure of sweatpants. I was then informed that Tami's mother was being taken to the ER after seeing the Dr about some abdominal pain after a fall she had the week before. Because of a poorly worded Dr's order and a well intentioned but completely idiotic dispatcher/controller she got transferred via ambulance from the nice, quiet, clean and totally non-busy Presbyterian ER where she was already parked at on the east side (her Dr's office is in the adjoining building) to the absolutely packed and nuts-with-homeless-people-shooting-up-in-the-bathroom ER downtown. All of the facilities she needed were in a place that would have seen her in and out in 3-4 hours. Instead she was made to wait hours to occupy a hospital bed for another several hours for the same services. Deplorable.
But where do I and my pants come in? When Tami tells me about the situation and I see a family member in need and decide to help. Tami asked if I had the energy for it, for which my response was (in, what I remember being, a very superhero like tone), "If it's family there isn't any question. We go." How cool am I right? Take that Captain Hammer! Deciding to leave my Superman robe at home, we jump in the car and head to the most likely place that she would be (no one told us that she had been transferred downtown instead of across a walkway until after we got there), the ER where she was already with her Dr.
She's not here...That was the answer that we got time and again when we asked about where she might be all over the ER on the east side. Then we get the news (from Tami's sister instead of the hospital that SHOULD be able to tell us) we race downtown. After getting there and learning that she had been sent for labs we took up a spot in the waiting room and I donned a mask immediately. After a short time she got wheeled out and told to to wait for a room. 2 hours later she was called back. Tami and her sister went back with her and I waited and watched as helicopter after helicopter dropped new patients off and people of all types use the bathrooms by the entrance for a "variety" of reasons.
An hour after that Tami's sister had to go home to take care of her little one and Tami and I elected to stay. I went back to the room and we waited. She had already seen the Dr and received orders for a CT with contrast and pain meds. The waiting went on for another hour until I went out and asked about it.
Tech: Who's your nurse?
Me: We haven't even seen a nurse.
Nurse: (flushed and overworked) It's me. I'm so sorry for the miss. I'll be right there.
Me: (Steaming) Thank you...
The nurse's name was Pete, and to his credit he was a great guy and a wonderful nurse. But it was more unnecessary pain and waiting for Tami's mom. By the time she got to go to CT it was past 10pm. Her original appointment was at 2pm, so she had already hit the 8 hour mark. We were going on 6 ours with little to eat and a (albeit superheroish kinda guy) cancer patient who starts to wave the flag around 6pm every night. But I had coffee in my veins (that I would later learn was decaf...thank you placebo effect...) and a Mom to take care of. Just before she had gone to CT, Tami and I drove our car up to the ER on the east side and drove it back downtown so we could take her home and still sleep in our own beds.
The GOOD news is that it wasn't anything really threatening like internal bleeding or a lacerated organ. Just some things we have to monitor for awhile. They gave us the go for discharge. It was like seeing the checkered flag. I wanted to jump up and down and drink a quart of milk. We got out of the ER just after midnight and started our trek to Edgewood. We dropped her off at her house around 1:30 on Saturday morning and headed home ourselves. We finally got home just before 2:30 and relieved my Dad who had so awesomely taken care of Myah during this circus.
Ah sleep...at least it was the weekend and I had a wonderful visit to look forward to with two longtime friends. That is a story for another blog post...but suffice it to say...with my Friday being crazy and energy consuming and a full weekend of visitors, I had to take today off because my energy was sapped to the point that some unknown force made me sit on the couch and watch TV. Finally caught up on Season 6 of the Guild and started at the beginning of one of my favorite business trip shows...Burn Notice. I'll be going straight through on that one over the next few months. :)
It is late and Tami is already looking at me with those I-told-you-not-to-start-a-blog-after-8pm eyes. So you'll have to read about my awesome weekend later.
Know when to hold 'em, know when to fold 'em and know when to walk away.
Until next time...
Jake
Wednesday, January 15, 2014
Weakness
For the last 3 days I have been sapped of strength and energy to the point that it's been a struggle to open my eyes and get out of bed. I've spent more time on the couch than on my feet and my family has watched me struggle with simple tasks. Myah finally saw some of the reality of my situation as I fell in the kitchen while Tami was in a lesson and I was trying to dinner together. She handled it pretty well, but I have noticed that she's hugged me more than she usually does since then.
I've had to take more time off work this week than I was expecting, which is hard because I have a project that is in danger of falling behind if I can't get there this week. I hate to take so much time off, but I don't know what's happening with my body right now and I just can't do it. It's hard to look even half a day of work in the face when it takes your wife standing next to you and helping you to sit up just to get you out of bed.
Needless to say, it has been a very demoralizing period for me. I don't feel like I can contribute in any way and that I'm placing a much larger burden on my family. I'm also having a lot of pain in my abdomen again. Pain that had gone away for a while. This can mean many things, but for someone who has very little will to fight right now, it just means that I'm getting sicker. This does not bode well for my emotional state. I've been holding back tears for days. Sometimes I can't. Two days ago, I was stuck on my bed while my parents waited to see me downstairs. I just couldn't see anyone. Thankfully, I pulled myself together and finally came down before they left and got to spend some quality time with them. But it was a struggle.
I had to go back to a previous blog that I wrote about not letting myself be sick (here) to provide some inspiration on how I can get moving this afternoon. I have yet to see if it works, but I'm determined to try. My goals for this afternoon are to fold laundry and find some way to get moving. We'll see if it happens.
I'd like to end with a little positive witticism like I usually do, but I just don't have it in me right now.
Jake
I've had to take more time off work this week than I was expecting, which is hard because I have a project that is in danger of falling behind if I can't get there this week. I hate to take so much time off, but I don't know what's happening with my body right now and I just can't do it. It's hard to look even half a day of work in the face when it takes your wife standing next to you and helping you to sit up just to get you out of bed.
Needless to say, it has been a very demoralizing period for me. I don't feel like I can contribute in any way and that I'm placing a much larger burden on my family. I'm also having a lot of pain in my abdomen again. Pain that had gone away for a while. This can mean many things, but for someone who has very little will to fight right now, it just means that I'm getting sicker. This does not bode well for my emotional state. I've been holding back tears for days. Sometimes I can't. Two days ago, I was stuck on my bed while my parents waited to see me downstairs. I just couldn't see anyone. Thankfully, I pulled myself together and finally came down before they left and got to spend some quality time with them. But it was a struggle.
I had to go back to a previous blog that I wrote about not letting myself be sick (here) to provide some inspiration on how I can get moving this afternoon. I have yet to see if it works, but I'm determined to try. My goals for this afternoon are to fold laundry and find some way to get moving. We'll see if it happens.
I'd like to end with a little positive witticism like I usually do, but I just don't have it in me right now.
Jake
Saturday, December 14, 2013
Potty Time
Disclaimer...As the title implies, much of this post will be about bodily functions and what happens (or doesn't) in the bathroom. I realize that I may talk about these things a lot, but it just happens to be one of the largest and most monitored parts of my journey, that it is hard to avoid. My promise to you is that I will consistently post a disclaimer so that you can choose to continue or catch the next bus (although, if my counters are correct, readership has been falling lately...probably because of posts like this). However, if you do hold on till the end, there is a slightly amusing anecdote about a very real conversation I had with God, while on the toilet, in a very convincing Irish brogue.
Since getting sick, I've had to pay attention to everything my body does or says. It's an amazing dichotomy really. I've gotten to know my body more in the past month than I ever have before. Yet I have this thing growing inside of me and I have no clue what it's doing to me on a second by second basis. It's a huge black hole in the middle of my gut that I won't have any insight into until January 10th. What I do know about it, is that it breaks a lot of stuff in my body. And the stuff that I take to fix it breaks even more stuff. Most of it in the "bathroom" arena. So let's just get right into it shall we? (Remember, I lost my pride and shame when they said I had cancer.)
Urination - All of the chemo books and guides suggest that you start peeing sitting down. Why? No matter how much you've got to pee, the plumbing just doesn't work right anymore. Today, I decided to follow all of the advice. I'm too tired to clean pee off the floor and my shoe again. It's happened too many times now.
Flatulation - I've always been a gassy boy. Until now. Now, I would give ANYTHING to pass some gas. But I just can't. It is such a painful existence. So when I do let go of one, I thank the heavens. I never know when this is going to happen (that means you need to be prepared for me not to excuse myself from the room when you're over for a visit). It may happen when I'm laying on my side, or it may happen whilst on the toilet. But when it does actually happen, my Savior gets a shout out. That's right. I talk to God when I fart. I talk to him other times too. In fact he and I have had a running dialog for the last several weeks. I'm told that's to be expected. I'm told a lot of things.
Since getting sick, I've had to pay attention to everything my body does or says. It's an amazing dichotomy really. I've gotten to know my body more in the past month than I ever have before. Yet I have this thing growing inside of me and I have no clue what it's doing to me on a second by second basis. It's a huge black hole in the middle of my gut that I won't have any insight into until January 10th. What I do know about it, is that it breaks a lot of stuff in my body. And the stuff that I take to fix it breaks even more stuff. Most of it in the "bathroom" arena. So let's just get right into it shall we? (Remember, I lost my pride and shame when they said I had cancer.)
Urination - All of the chemo books and guides suggest that you start peeing sitting down. Why? No matter how much you've got to pee, the plumbing just doesn't work right anymore. Today, I decided to follow all of the advice. I'm too tired to clean pee off the floor and my shoe again. It's happened too many times now.
Flatulation - I've always been a gassy boy. Until now. Now, I would give ANYTHING to pass some gas. But I just can't. It is such a painful existence. So when I do let go of one, I thank the heavens. I never know when this is going to happen (that means you need to be prepared for me not to excuse myself from the room when you're over for a visit). It may happen when I'm laying on my side, or it may happen whilst on the toilet. But when it does actually happen, my Savior gets a shout out. That's right. I talk to God when I fart. I talk to him other times too. In fact he and I have had a running dialog for the last several weeks. I'm told that's to be expected. I'm told a lot of things.
Solid Waste - this is an even more elusive beast than it's noisy cousin. I never can tell if there is a pile up on the freeway that's blocking all of the other traffic (common when you have a big tumor in your rectum) or if I just haven't had enough solids today. I'm back to Miralax to see if it can bring back the magic but it's too soon to tell. I find myself reviewing the side effect sheets for my drugs and lamenting the fact that I didn't get diarrhea. Stupid, I know. I would be even more dehydrated than I am right now and I would be just as miserable.
Vomitus - Thankfully this hasn't afflicted me yet, but I will rue the day that it does. I decided to stop my Zofran today. 2 days early. It makes me really super dizzy. I've been pretty good all day until this evening. With all of my second day chemo pain, my stomach is a bit empty and a bit queasy. Add to that, the fact that I totally lost my shit tonight and went on for who knows how long about all the emotional stuff that is churning in my head. That lead to voluminous amounts of mucus, most of which lodged firmly in the very back of my throat. Right at the gag button. So now, I have to clear my throat and feel like I'm going to spew. Here's the big problem with me and spew...I'm a Tuba player. My diaphragm may have lost some of it's umph in the last two months or so, but it still makes me one of the most dangerous projectile vomiters this side of the Mississippi. I have two little orange buckets strategically placed in the house. It's cute. I'm guessing it will be a bit ineffective when the time comes, but quaint nonetheless. I'm hoping that time doesn't come. Because it won't be pretty and it will be plenty painfull. A hiccup buckles my knees and when I do laugh or cry, I have to stop before it becomes a snowball where the pain keeps it rolling.
An Irishman talks to God...
This was really a surprise. I've always felt myself to be a spiritual man, a worldy man and a just-in-general pretty good guy. I accepted Jesus into my heart many years ago and our bond has been tested many times since then. Mostly by the Tea Party. (Yup, I just went political...but don't worry that's where it stops for now.) I have an issue with religion. I don't have an issue with God though. I think we're pretty good. I can say that because in the midst of pain this evening I talked with God...on the toilet...in a thick Irish brogue. It was a 20 minute conversation where I asked him to give me strength and courage and long suffering. I asked that he watch over my girls with or without me. And the entire time I'm an Irishman. I didn't intentionally do it and it lasted the entire conversation. And I felt really good afterward. It is honestly something that I can say I have never done before. But that I hope happens again. Obviously, doing it on purpose would ruin it. So...hopefully I'll be surprised again.
And there was another first as well. I asked for time. I've made a conscious effort not to do this with God. Anytime that I thought about it I felt like I was bargaining. When I heard it come out, even as a very reasonable request in a very reasonable accent, it still felt like the desperate act of a desperate man. I won't be doing that again. Talking with God shouldn't make you feel uncomfortable or desperate. It should enrich you, calm you and fill you with peace.
Have a surprise conversation with your God tonight. You won't regret it. ;)
Jake
Sunday, December 1, 2013
Please God...Not the Massage Chair!
My cousin has named my cancer Sophia. She's a real pain in my ass. To be more honest...at the moment she's a real pain in the abdomen. Butt I like the pun. (giggle)
Sophia has taken so much from me. My ability to eat right, breath right, drink right, sleep, think clearly...well, I could go on butt that wouldn't add value at this point. She has also begun to take away my massage chair. I think that this hits me more in the emotional department than anything else (at this very moment at least).
For those of you that know us, you know that we have an additional family member that stays in the living room and helps us get trough all of the long days. We just call it "The Chair", but my mother has affectionately named it "Darth". (Due to the black leather and compressor sounds as it kneads your calves and butt.) When the pump went out earlier this year we freaked out. First world problem I know. Butt seriously...we were pretty upset. So we found a way to fix it and all was right with the world again.
When I was diagnosed a couple of weeks ago it had already gotten to the point to where I couldn't sit through the automated routines. Too much rocking side to side. Since then I've been able to do just straight up back massages. When my body contorts for much of the night, the chair is my only non-induced salvation. This evening, as I sat down for a much needed 20 minute rub down, Sophia reared her ugly head and gave me the finger. I had to reduce my full back rubdown to just shoulders.
When you have issues with your liver they poke you a lot. They poke your front, they poke your sides and they poke your back. If you've been following along, you know that my pain comes from the protective coating surrounding my liver. As the tumors grow out of the surface of the liver, they protrude into the coating (which is under stress anyway, due to the increasing size of my liver). Up to this point, I hadn't had any issues with my back. All the pain has been limited to my front. Sitting down in my bastion of relaxation this evening, I felt a sharp pain each time the rollers passed along the right side of my mid-back. So much so that I had to stop and readjust to have it limited to my shoulders only.
And piece by piece, Sophia takes. She's a greedy little unwanted house guest. Butt I don't intend to let her take everything. She can't take the love that I feel for my family and friends. She can't take the prayers and thoughts that are streaming my way on a constant basis. She may eventually take my physical freedom, butt she'll never take my spiritual and emotional freedom. Those I hold too dear.
So...fine...I'm slowly losing my massage chair for now. It's a small price to pay. I'll be back to full massages someday. I'll also be back to bike rides and pool parties. And wings. :)
See how many times you can substitute butt for but in a written work without someone commenting this week. ;)
Jake
Sophia has taken so much from me. My ability to eat right, breath right, drink right, sleep, think clearly...well, I could go on butt that wouldn't add value at this point. She has also begun to take away my massage chair. I think that this hits me more in the emotional department than anything else (at this very moment at least).
For those of you that know us, you know that we have an additional family member that stays in the living room and helps us get trough all of the long days. We just call it "The Chair", but my mother has affectionately named it "Darth". (Due to the black leather and compressor sounds as it kneads your calves and butt.) When the pump went out earlier this year we freaked out. First world problem I know. Butt seriously...we were pretty upset. So we found a way to fix it and all was right with the world again.
When I was diagnosed a couple of weeks ago it had already gotten to the point to where I couldn't sit through the automated routines. Too much rocking side to side. Since then I've been able to do just straight up back massages. When my body contorts for much of the night, the chair is my only non-induced salvation. This evening, as I sat down for a much needed 20 minute rub down, Sophia reared her ugly head and gave me the finger. I had to reduce my full back rubdown to just shoulders.
When you have issues with your liver they poke you a lot. They poke your front, they poke your sides and they poke your back. If you've been following along, you know that my pain comes from the protective coating surrounding my liver. As the tumors grow out of the surface of the liver, they protrude into the coating (which is under stress anyway, due to the increasing size of my liver). Up to this point, I hadn't had any issues with my back. All the pain has been limited to my front. Sitting down in my bastion of relaxation this evening, I felt a sharp pain each time the rollers passed along the right side of my mid-back. So much so that I had to stop and readjust to have it limited to my shoulders only.
And piece by piece, Sophia takes. She's a greedy little unwanted house guest. Butt I don't intend to let her take everything. She can't take the love that I feel for my family and friends. She can't take the prayers and thoughts that are streaming my way on a constant basis. She may eventually take my physical freedom, butt she'll never take my spiritual and emotional freedom. Those I hold too dear.
So...fine...I'm slowly losing my massage chair for now. It's a small price to pay. I'll be back to full massages someday. I'll also be back to bike rides and pool parties. And wings. :)
See how many times you can substitute butt for but in a written work without someone commenting this week. ;)
Jake
Friday, November 22, 2013
Your Cancer's Better Than Mine
It's ridiculous to say, or even think. But I will freely admit to falling into this trap more than once already. Today marks the first full week that I have been diagnosed with Colorectal Liver Metastases (CLM). It's the second deadliest form of cancer I'm told. (remember, Tami has pretty much forbidden me from looking up any more numbers and pictures and stuff) That said, my chances aren't very good. I know this. I'm choosing to stay positive and beat this thing. If my Great Aunt can still be kicking after years of chemo at her advanced age (91...and she was diagnosed with lymphoma almost 15 years ago) and her incredibly frail body, I should be looking pretty good.
The problem is the little dark place in my head and the sometimes searing pain in my gut. When those things combine, along with my problems eating, and taking in too much sugar and on and on and on...we'll lets just say that my slightly less positive side comes out. And I've found that side to be spiteful, envious and not at all in line with how I should be viewing the world right now. I look at other people who are going through my same journey. I read their blogs, talk to their families or even text them. And on a rare occasion I look at their situation and pity myself. Yes. I see them as luckier than me. Maybe they caught the cancer early and they are only treating a single tumor, maybe it's one of those cancers that has a really high survivability rate, maybe maybe maybe...
It doesn't matter that they are just as scared as I am about facing such an unknown. It doesn't matter that just uttering the word cancer makes people's blood pressure elevate or causes them to break out in hives. It doesn't matter that they may not have half of the support system that I do, with amazing friends and family, great doctors at a nationally recognized cancer center and a wonderful job with fantastic health insurance. Because in that moment, their cancer is better than mine.
This is a dangerous slope. If you buy into this, you start seeing it everywhere as you travel outside of the cancer realm. You draw stupid parallels in TV shows or commercials. You start looking at people on the street or from your past and think, how do I have this and you don't? I have so much to live for and you're wasting your life...and I get cancer? And not only that, a bad one, that's already advanced enough to make some of the doctors you interact with give you that sad look as they say they're sorry. Poor me.
See...It's easy isn't it? This usually happens when I'm tired or still in pain or weak from doing too much work, like climbing the stairs 3 times in an hour. It's destructive. It clouds your mind and your ability to heal. It takes away the laser focus that should be honed on caloric intake, regular exercise, mental health. I start chemo next week and I need to be firing on all cylinders. I don't have time for these negative episodes and self involved pity parties where I actually think negatively about someone going through the same thing I am. When this happens, it's an affront to all of those sending me prayers and positive thoughts.
Thankfully, it doesn't happen often, but times aren't as dark as they are going to get in the near future. It always hits when you're down. The trick is to find a way out of it before you fall into the hole. I try to find beauty in just about everything these days. We got a new thermometer a few days ago and took my temp tonight because I felt warm. Low and behold, a low grade fever of 100.5. I know it's a low grade fever instantly, even before I see the numbers because the display registers an amber color. I could've been down about the fever. If that happens when I'm on chemo we have to call the doctor and possibly make a trip in. But I didn't. I felt like shit and it was a perfect opportunity, but there was that amber background. I appreciate efficiency. So this little device was perfect in it's simplicity. No need to remember ranges, or look things up on the Internet. Just 3 colors to remember. Green=Good, Amber=Low Grade Fever, Red=Doctor's Visit (in my case anyway). I latched onto this like a vice. It made me feel good that some engineer somewhere thought about making something easier...and it worked.
We live in a world today where there is an abundance of "poor me" happening all around us. And it's infectious. Our children aren't learning to grow out of it and end up becoming "poor me" adults. Every time it happens to me I feel pretty much instant remorse. As it gets easier to fall into, I need to find more things to keep me from sinking. I can only take my temperature so many times, so there needs to be something else. It's you. :) I go back to my support system. I reread posts and email and comments and I'm blown away at how lucky I am. All of you are pretty darn wonderful and I so cherish having you in my life.
Thank you for being you.
Jake
The problem is the little dark place in my head and the sometimes searing pain in my gut. When those things combine, along with my problems eating, and taking in too much sugar and on and on and on...we'll lets just say that my slightly less positive side comes out. And I've found that side to be spiteful, envious and not at all in line with how I should be viewing the world right now. I look at other people who are going through my same journey. I read their blogs, talk to their families or even text them. And on a rare occasion I look at their situation and pity myself. Yes. I see them as luckier than me. Maybe they caught the cancer early and they are only treating a single tumor, maybe it's one of those cancers that has a really high survivability rate, maybe maybe maybe...
It doesn't matter that they are just as scared as I am about facing such an unknown. It doesn't matter that just uttering the word cancer makes people's blood pressure elevate or causes them to break out in hives. It doesn't matter that they may not have half of the support system that I do, with amazing friends and family, great doctors at a nationally recognized cancer center and a wonderful job with fantastic health insurance. Because in that moment, their cancer is better than mine.
This is a dangerous slope. If you buy into this, you start seeing it everywhere as you travel outside of the cancer realm. You draw stupid parallels in TV shows or commercials. You start looking at people on the street or from your past and think, how do I have this and you don't? I have so much to live for and you're wasting your life...and I get cancer? And not only that, a bad one, that's already advanced enough to make some of the doctors you interact with give you that sad look as they say they're sorry. Poor me.
See...It's easy isn't it? This usually happens when I'm tired or still in pain or weak from doing too much work, like climbing the stairs 3 times in an hour. It's destructive. It clouds your mind and your ability to heal. It takes away the laser focus that should be honed on caloric intake, regular exercise, mental health. I start chemo next week and I need to be firing on all cylinders. I don't have time for these negative episodes and self involved pity parties where I actually think negatively about someone going through the same thing I am. When this happens, it's an affront to all of those sending me prayers and positive thoughts.
Thankfully, it doesn't happen often, but times aren't as dark as they are going to get in the near future. It always hits when you're down. The trick is to find a way out of it before you fall into the hole. I try to find beauty in just about everything these days. We got a new thermometer a few days ago and took my temp tonight because I felt warm. Low and behold, a low grade fever of 100.5. I know it's a low grade fever instantly, even before I see the numbers because the display registers an amber color. I could've been down about the fever. If that happens when I'm on chemo we have to call the doctor and possibly make a trip in. But I didn't. I felt like shit and it was a perfect opportunity, but there was that amber background. I appreciate efficiency. So this little device was perfect in it's simplicity. No need to remember ranges, or look things up on the Internet. Just 3 colors to remember. Green=Good, Amber=Low Grade Fever, Red=Doctor's Visit (in my case anyway). I latched onto this like a vice. It made me feel good that some engineer somewhere thought about making something easier...and it worked.
We live in a world today where there is an abundance of "poor me" happening all around us. And it's infectious. Our children aren't learning to grow out of it and end up becoming "poor me" adults. Every time it happens to me I feel pretty much instant remorse. As it gets easier to fall into, I need to find more things to keep me from sinking. I can only take my temperature so many times, so there needs to be something else. It's you. :) I go back to my support system. I reread posts and email and comments and I'm blown away at how lucky I am. All of you are pretty darn wonderful and I so cherish having you in my life.
Thank you for being you.
Jake
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