Jake passed away on May 11, 2014. Mother's Day. Time of death was called at 3:24am, when the hospice nurse came. In reality, it was more like 2:08am. I know because I was holding his hand as he took his last breath.
I know a lot of you are wondering what had happened after his last post, so I wanted to be able to share that with you. We were told to expect extreme fatigue following his last chemo treatment. On the evening of Monday, May 5th, Jake started falling asleep in the middle of sentences. By Tuesday, he couldn't stay awake to eat. When I called our PA, she told me he was experiencing hepatic encephalopathy. His liver was shutting down; the toxins were building up in his blood and were affecting his brain. If the toxins could be flushed out of his body via laxatives, he would improve.
By Wednesday morning, nothing had changed, so the oncologist told me to take him to the ER. Once there, Jake was admitted to the hospital with renal failure. Pretty much all of the liquid in his body was going straight to his abdomen, bypassing his kidneys and draining them dry. We considered dialysis, but were advised that it was really too aggressive a treatment for his condition.
During the next few days, there were lots of tests and procedures. He had his drainage port put in, but had to have two rounds of platelets before that could occur. During this time, he tried hard to be awake for the important discussions, and for his visitors. In the words of one of his closest friends, "Jake collects friends." From the time we arrived at the hospital on Wednesday until he took his last breath, there was always someone by his side.
In every discussion we had with hospital staff, Jake was adamant about his desire to go home. (He hadn't even wanted to be admitted in the first place.) On the morning of Saturday, May 10th, he was discharged from the hospital under hospice care. His blood pressure had been getting gradually lower for several weeks, so due to concerns about him passing out, he went home via hospital transport (aka ambulance). Over the next 16 hours, he did his best to make conversation with everyone who came to see him, even cracking jokes on several occasions. His eyes still lit up when I walked in the room. Some of the last words he said to me were, "I love you... unabashedly."
At 12:45am, I went to bed, leaving Jake under the watchful eye of several of his cousins. I was sure his life would continue for at least a few more days. I expected him to slip into a coma at some point, as all of his organs continued to shut down and he had denied life-saving measures. At 1:45am, I was awoken by the words, "Jake needs you." I rushed downstairs and held his hand as he finished his journey on this earth. I later found out a most extraordinary story that I have been debating about sharing…
On Monday the 5th, our pastor came to visit with Jake. Jake had confided in him that he was scared about what was next. Jake also told him that if he could find a way to tell us he could hear us on the other side, he would do it. When Jake passed, I was told by his cousin, who is a respiratory therapist, that had it been in a hospital setting, she would have called the time of death when her son went up the stairs to get me. Jake had stopped breathing. As I came down the stairs and he heard my voice, Jake took a huge breath and looked straight into my eyes. I honestly believe he heard my voice from "the other side" and wanted us all to know that he can hear us. He always was a talker; now he has to sit and listen.
My husband was such a courageous fighter. He fought until the very end. He wasn't ready to be finished with chemo, even though his liver was. He wasn't ready to cancel our vacation, even though his body was. He wasn't ready for his life to be over. None of us were. But then, how can one ever really be ready for such finality?
My husband was truly one of the most amazing people I have ever met. We will celebrate his life at an After Party, just as he wanted. I don't have any details yet, mostly because I haven't the heart to plan them.
Life is short. Sometimes unbearably so. Make sure the people you love know that you love them.
Tami
Thursday, May 29, 2014
Saturday, May 3, 2014
A New Drug, More Bad News and Hope for Comfort
Two nights ago we were eating dinner at the table and Myah looks at me and points out a fact that I've been trying to avoid. She said, "Dad, your eyes are yellow." In truth, they are getting a little yellow but aren't yet yolk color yet. It is a move in the wrong direction however.
So here are the updates from the last treatment...last time you tuned in we were looking at trying a new drug, evaluating different surgeries and making a bunch of decisions.
Well...the good news is, I don't have as many decisions to make. :) We had our consultation with the surgeon on Wed of this week. You know, you never really get used to the look that the Dr gives you when he delivers bad news. It's sort of sympathy, but it's more uncomfortable silence, knowing that he has another patient waiting in another room. And then they leave. BUT....I'm getting ahead of myself. We discussed all of the surgical options available:
1) Cut me open and pick out all of the abdominal tumors, then fill me with hot chemo and sew me up, hoping that the chemo takes care of what got left behind. VERDICT - Invasive procedure with a lot of chemo that my liver most likely wouldn't tolerate. I'm not a good candidate. Too much risk for too little reward.
2) Same as above but as a laproscopic procedure. VERDICT - Less invasive but with the same chemo issues at the one above. I'm not a good candidate. Too much risk for too little reward.
3) Hepatic Arterial Infusion pump (HAI). This procedure would put a pump in my abdomen with a direct line to my liver. I would get 2 week chemo infusions followed by 2 weeks of rest. VERDICT - I think that you can all see the trend here...the disease in my liver is simply too much at this time to allow the surgeon to accept any risk in this endeavor. I even asked that if we went home and decided to take the risks would surgery still be possible...no.
So....surgery is NOT any kind of an option. Then what are my options? They really boil down to just one. Hope this new drug works. The first time I got drained they took 3 liters, the second time they took 4 liters and this last Thursday they took 5 liters. Clearly not a trend pattern you'd like to see pretty much anywhere. I have another treatment on the 16th of May and we will keep an eye on it after that.
A point of good news is that before my next treatment I'm supposed to be fitted with a tap that will let me drain myself vs going in to the cancer center once a week. That will keep me much more comfortable as I wait for more news.
A point of not so good news is what really drives the reality of all of this home. As I feel the liquid drain from my gut, my Dr says that we should talk about something that we haven't brought up yet. If this drug doesn't work and my condition doesn't improve, he would like to start talking about hospice. I can't tell you how many times I've been hit in the face with something that I've been expecting, but it still came as a complete surprise when the point of impact came. That's exactly what happened when my Dr said hospice.
So, now all of the preparation that we did when I was diagnosed becomes very relevant. And there is still so much to do. One of the most immediate things to do is to get the ubiquitous second opinion, so we've started the appointment process with MD Anderson. Logistically it will most likely happen in June. We have a family vacation scheduled to Washington DC at the end of May and it is vitally important for me to share that experience with my daughter. This becomes more of a concern the weaker I become. I should be able to eat more and have more energy once we get the permanent drainage tap in. More to come on that.
I'm also starting to plan my afterparty. Yes...it will be a party. People should have fun, share stories, eat wings and drink good beer. I still don't know the details on that...I suppose it depends on how many people would be willing to travel to get there. If there aren't many then it might be just a week or two after my "transition". If more want to come, we would have it about a month afterwards to allow people to arrange travel.
Speaking of ceremonies, tonight we had a Lakota/Sioux sage ceremony. I have never been through one of these and tonight it was in my honor. I am so humbled that this was done for me. Whether it is the Creator or God, the prayers are the same and the power of the those prayers is just as magnified. I definitely felt the divine flow through me and fill me with awe and peace. I can't put into words how special it was to have a good friend of the family request this for me.
Find some peace tonight. However you choose to do that. Find some and then share it with someone you love.
Jake
So here are the updates from the last treatment...last time you tuned in we were looking at trying a new drug, evaluating different surgeries and making a bunch of decisions.
Well...the good news is, I don't have as many decisions to make. :) We had our consultation with the surgeon on Wed of this week. You know, you never really get used to the look that the Dr gives you when he delivers bad news. It's sort of sympathy, but it's more uncomfortable silence, knowing that he has another patient waiting in another room. And then they leave. BUT....I'm getting ahead of myself. We discussed all of the surgical options available:
1) Cut me open and pick out all of the abdominal tumors, then fill me with hot chemo and sew me up, hoping that the chemo takes care of what got left behind. VERDICT - Invasive procedure with a lot of chemo that my liver most likely wouldn't tolerate. I'm not a good candidate. Too much risk for too little reward.
2) Same as above but as a laproscopic procedure. VERDICT - Less invasive but with the same chemo issues at the one above. I'm not a good candidate. Too much risk for too little reward.
3) Hepatic Arterial Infusion pump (HAI). This procedure would put a pump in my abdomen with a direct line to my liver. I would get 2 week chemo infusions followed by 2 weeks of rest. VERDICT - I think that you can all see the trend here...the disease in my liver is simply too much at this time to allow the surgeon to accept any risk in this endeavor. I even asked that if we went home and decided to take the risks would surgery still be possible...no.
So....surgery is NOT any kind of an option. Then what are my options? They really boil down to just one. Hope this new drug works. The first time I got drained they took 3 liters, the second time they took 4 liters and this last Thursday they took 5 liters. Clearly not a trend pattern you'd like to see pretty much anywhere. I have another treatment on the 16th of May and we will keep an eye on it after that.
A point of good news is that before my next treatment I'm supposed to be fitted with a tap that will let me drain myself vs going in to the cancer center once a week. That will keep me much more comfortable as I wait for more news.
A point of not so good news is what really drives the reality of all of this home. As I feel the liquid drain from my gut, my Dr says that we should talk about something that we haven't brought up yet. If this drug doesn't work and my condition doesn't improve, he would like to start talking about hospice. I can't tell you how many times I've been hit in the face with something that I've been expecting, but it still came as a complete surprise when the point of impact came. That's exactly what happened when my Dr said hospice.
So, now all of the preparation that we did when I was diagnosed becomes very relevant. And there is still so much to do. One of the most immediate things to do is to get the ubiquitous second opinion, so we've started the appointment process with MD Anderson. Logistically it will most likely happen in June. We have a family vacation scheduled to Washington DC at the end of May and it is vitally important for me to share that experience with my daughter. This becomes more of a concern the weaker I become. I should be able to eat more and have more energy once we get the permanent drainage tap in. More to come on that.
I'm also starting to plan my afterparty. Yes...it will be a party. People should have fun, share stories, eat wings and drink good beer. I still don't know the details on that...I suppose it depends on how many people would be willing to travel to get there. If there aren't many then it might be just a week or two after my "transition". If more want to come, we would have it about a month afterwards to allow people to arrange travel.
Speaking of ceremonies, tonight we had a Lakota/Sioux sage ceremony. I have never been through one of these and tonight it was in my honor. I am so humbled that this was done for me. Whether it is the Creator or God, the prayers are the same and the power of the those prayers is just as magnified. I definitely felt the divine flow through me and fill me with awe and peace. I can't put into words how special it was to have a good friend of the family request this for me.
Find some peace tonight. However you choose to do that. Find some and then share it with someone you love.
Jake
Thursday, April 24, 2014
A Rough Week
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
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
Friday, April 18, 2014
Treatment #11 - Or "How to lose 10 lbs in 20 minutes"
I've been unable to blog for the last 2 weeks because of some very intense physical and emotional pain. Things have been going downhill for a bit now, with confusing numbers and new challenges that seem insurmountable at times. While things with my cancer seem to be improving, things with my liver in general seem to be spiraling downward with the biggest issues being in the last 2 weeks.
Itchy and Scratchy
For the last 3-4 weeks I've had an off and on again full body rash. We've looked at several different causes for this with no luck. We also have yet to find a good long term source of relief. Of all the lotions and salves and balms, I get about 20 minutes of itch relief from calamine lotion. 20 minutes isn't a long time when everything itches for days...yes...everything. And that's all I'll say about that.
Liquid Belly
Over the same period I've had an increasingly large abdomen, sometimes growing by the day. In the beginning I thought it was gas pain, but as it kept growing and becoming more and more painful, we started suspecting something else. 2 weeks ago I had a CT scan that revealed fluid in my abdomen (otherwise known as ascites). Now, we all have some fluid in our abdomen that acts as a natural lubricant for our internal organs, but not in the amounts that can been seen on a CT scan. Just yesterday (2 weeks later) I had an ultrasound to determine how much fluid was present. This led to an immediate paracentesis (draining of the fluid) that resulted in the removal of 3 liters of fluid from my abdomen over 20 minutes. That means a 10 pound weight loss in less time than it takes to watch a news broadcast. Ummmm...wow. And they didn't take it all...and it's coming back already.
This condition impacts every detail of my day. I can't eat because of the pressure in my abdomen. I can't sleep because every horizontal position results in painful pressure. It's possible that the cause of my ascites (a failing liver or blocked bile duct) is also the cause of my itchiness and my restroom issues (I'm having real issues urinating now, with a typical session taking around 5 minutes to finish and only happening twice a day no matter how much liquid I consume.). The direct cause of the ascites is an elevated bilirubin level. Both direct and total bilirubin numbers have been high in my labs over the last 2 measurements (4 weeks). We don't know why my bilirubin levels are high yet, but if they continue to increase at the levels we are seeing, I can expect to see jaundice in the next couple of weeks. First the whites of my eyes will yellow and then my skin will follow. My ascites will also continue. If I have to have it drained too often, they will install a tap in my abdomen that I have to use to drain my abdomen at home on an ongoing basis.
What does it all mean?
Who the hell knows at this point. From a cancer perspective, I'm still moving in the right direction with a new lower CEA number of 86.8 and encouraging scan results. From a weight loss perspective, I've been living with a red herring. The only thing keeping my weight stabilized was the growing subterranean reservoir in my gut. Even with a little fluid still stuck down there I'm at a weight I haven't seen since the early '90s. So the weight loss continues and presents an issue when we look at what dietary restrictions pop up for treating my liver.
My Dr is thinking that a possibility for the liver issues is drug toxicity. This means that we cut out another one of my chemo drugs today and added the other back in. So the zaltrap is back in and the irinotecan is out. The benefit of this is that today has been a much better chemo day without all of the confusion and nausea. The bad part is that it is a shot in the dark that we have to wait two weeks to see any results from.
None of this is good for my frame of mind. Constant pain and being locked in a skin suit made of old rough wool wears on a guy. I put a smile on my face as much as I can, but it gets harder with each passing day. Add to that the fact that I'm still facing multiple things that can kill me pretty soon...and the general feeling around the house is less than positive at times. But we do try to add some perspective and focus on the task at hand. Sometimes it's healthy to stop looking at the big picture for a limited time. We'll just take each issue as it comes up and fight like hell to overcome adversity one step at a time.
When the weird looking yellow guy sits next you in a meeting or stands behind you in line at the grocery store, don't worry about it. He's just adding a little color to the room. ;)
Jake
Itchy and Scratchy
For the last 3-4 weeks I've had an off and on again full body rash. We've looked at several different causes for this with no luck. We also have yet to find a good long term source of relief. Of all the lotions and salves and balms, I get about 20 minutes of itch relief from calamine lotion. 20 minutes isn't a long time when everything itches for days...yes...everything. And that's all I'll say about that.
Liquid Belly
Over the same period I've had an increasingly large abdomen, sometimes growing by the day. In the beginning I thought it was gas pain, but as it kept growing and becoming more and more painful, we started suspecting something else. 2 weeks ago I had a CT scan that revealed fluid in my abdomen (otherwise known as ascites). Now, we all have some fluid in our abdomen that acts as a natural lubricant for our internal organs, but not in the amounts that can been seen on a CT scan. Just yesterday (2 weeks later) I had an ultrasound to determine how much fluid was present. This led to an immediate paracentesis (draining of the fluid) that resulted in the removal of 3 liters of fluid from my abdomen over 20 minutes. That means a 10 pound weight loss in less time than it takes to watch a news broadcast. Ummmm...wow. And they didn't take it all...and it's coming back already.
This condition impacts every detail of my day. I can't eat because of the pressure in my abdomen. I can't sleep because every horizontal position results in painful pressure. It's possible that the cause of my ascites (a failing liver or blocked bile duct) is also the cause of my itchiness and my restroom issues (I'm having real issues urinating now, with a typical session taking around 5 minutes to finish and only happening twice a day no matter how much liquid I consume.). The direct cause of the ascites is an elevated bilirubin level. Both direct and total bilirubin numbers have been high in my labs over the last 2 measurements (4 weeks). We don't know why my bilirubin levels are high yet, but if they continue to increase at the levels we are seeing, I can expect to see jaundice in the next couple of weeks. First the whites of my eyes will yellow and then my skin will follow. My ascites will also continue. If I have to have it drained too often, they will install a tap in my abdomen that I have to use to drain my abdomen at home on an ongoing basis.
What does it all mean?
Who the hell knows at this point. From a cancer perspective, I'm still moving in the right direction with a new lower CEA number of 86.8 and encouraging scan results. From a weight loss perspective, I've been living with a red herring. The only thing keeping my weight stabilized was the growing subterranean reservoir in my gut. Even with a little fluid still stuck down there I'm at a weight I haven't seen since the early '90s. So the weight loss continues and presents an issue when we look at what dietary restrictions pop up for treating my liver.
My Dr is thinking that a possibility for the liver issues is drug toxicity. This means that we cut out another one of my chemo drugs today and added the other back in. So the zaltrap is back in and the irinotecan is out. The benefit of this is that today has been a much better chemo day without all of the confusion and nausea. The bad part is that it is a shot in the dark that we have to wait two weeks to see any results from.
None of this is good for my frame of mind. Constant pain and being locked in a skin suit made of old rough wool wears on a guy. I put a smile on my face as much as I can, but it gets harder with each passing day. Add to that the fact that I'm still facing multiple things that can kill me pretty soon...and the general feeling around the house is less than positive at times. But we do try to add some perspective and focus on the task at hand. Sometimes it's healthy to stop looking at the big picture for a limited time. We'll just take each issue as it comes up and fight like hell to overcome adversity one step at a time.
When the weird looking yellow guy sits next you in a meeting or stands behind you in line at the grocery store, don't worry about it. He's just adding a little color to the room. ;)
Jake
Sunday, April 6, 2014
Treatment #10 and some mixed news
We've been through enough treatments now that the nurses know our names and we're starting to see other patients that we recognize and talk to from time to time. Double digits...#10. Before I get too far into the treatment update, I'll start with our Dr update after a host of CT and MRI scans. If you're following my on FB, you'll have already seen a preview of this.
Scan results:
CT - No movement up into my lungs (yay), no big difference in my primary tumor (yay) and it looks like there may be slight shrinkage of the a couple tumors in my liver (double yay!!). It also shows that my abdomen is filling up with fluid. Not only is this troubling from a liver function perspective, but it is pretty uncomfortable. If it continues we may have to look at draining it from time to time. Sounds like fun.
MRI - My brain hole is healthy and cancer free. Unfortunately there isn't a good explanation for my headaches yet so I'm getting a referral to an ENT Doc. Hopefully something tangible will come out of that meeting. They've been getting bad enough to keep me from driving at times.
Dr Update:
For the past week I've had a rash all over my body that has really impacted my sleep and just been a general pain in the ass. As of yet we have nothing to relate it back to so we are starting with the medications that I've had reactions to in the past. In this case the Doc focused on one of my chemo drugs...Zaltrap. We decided to skip the Zaltrap this treatment, which made me happy because I've had a bad reaction to it every time I get it. She also put me on a tapering dose of steroids to see if I could knock the rash down quickly. We'll see how those work.
The other issue that we brought up to the Doc was the reaction that I'm having to my blood thinner injections. My entire stomach is covered in erythema nodosum, which looks like a rash but isn't. It's under the skin and goes away in 3-6 weeks IF you stop doing what's causing it. Unfortunately I can't stop my injections so we have to start looking for a new place to do them. And since it won't be in a spot that I can reach, Tami is going to be picking up a new skill...giving injections. We will start in the arms in the next few days and see if the erythema shows up there as well.
My weight is continuing to stay even which is wonderful news. The challenge of finding and choosing food that I can actually eat still plagues me on a daily basis. Friday afternoon, I wanted pizza so we stopped and picked up a couple of pies. I had one slice and immediately almost lost it to the sink. I became very nauseous for the rest of the day and finally gave up my dinner just before bedtime. So much for picking the right food that day. :( But last night we had success. (I attribute some of this win to the steroids that I'm on.) I wanted wings for some reason, so we ordered wings (garlic parm and mild original...because I'm a heat wussy now) and I ate them! I haven't had an order of wings since before I was diagnosed. It's the little things.
So, most of the news this weekend has been positive. Now to the not so hot news. My CEA numbers are on the rise again. I had dropped to 89.1 and was looking for another drop from there. Instead I was greeted with a rise to 112.8. That's higher than the last 2 measurements and is a real hit to the momentum. My liver numbers are also on the rise, which isn't the best sign. Nothing dangerous yet, but it does point to something not going quite right. So these are the things that we need to watch.
Take some time this week to really focus on something or someone you love. And don't forget to tell the people that you care about how much you appreciate them.
I appreciate everyone who follows this blog and sends their thoughts and prayers our way. We sure do need them.
Jake
Scan results:
CT - No movement up into my lungs (yay), no big difference in my primary tumor (yay) and it looks like there may be slight shrinkage of the a couple tumors in my liver (double yay!!). It also shows that my abdomen is filling up with fluid. Not only is this troubling from a liver function perspective, but it is pretty uncomfortable. If it continues we may have to look at draining it from time to time. Sounds like fun.
MRI - My brain hole is healthy and cancer free. Unfortunately there isn't a good explanation for my headaches yet so I'm getting a referral to an ENT Doc. Hopefully something tangible will come out of that meeting. They've been getting bad enough to keep me from driving at times.
Dr Update:
For the past week I've had a rash all over my body that has really impacted my sleep and just been a general pain in the ass. As of yet we have nothing to relate it back to so we are starting with the medications that I've had reactions to in the past. In this case the Doc focused on one of my chemo drugs...Zaltrap. We decided to skip the Zaltrap this treatment, which made me happy because I've had a bad reaction to it every time I get it. She also put me on a tapering dose of steroids to see if I could knock the rash down quickly. We'll see how those work.
The other issue that we brought up to the Doc was the reaction that I'm having to my blood thinner injections. My entire stomach is covered in erythema nodosum, which looks like a rash but isn't. It's under the skin and goes away in 3-6 weeks IF you stop doing what's causing it. Unfortunately I can't stop my injections so we have to start looking for a new place to do them. And since it won't be in a spot that I can reach, Tami is going to be picking up a new skill...giving injections. We will start in the arms in the next few days and see if the erythema shows up there as well.
My weight is continuing to stay even which is wonderful news. The challenge of finding and choosing food that I can actually eat still plagues me on a daily basis. Friday afternoon, I wanted pizza so we stopped and picked up a couple of pies. I had one slice and immediately almost lost it to the sink. I became very nauseous for the rest of the day and finally gave up my dinner just before bedtime. So much for picking the right food that day. :( But last night we had success. (I attribute some of this win to the steroids that I'm on.) I wanted wings for some reason, so we ordered wings (garlic parm and mild original...because I'm a heat wussy now) and I ate them! I haven't had an order of wings since before I was diagnosed. It's the little things.
So, most of the news this weekend has been positive. Now to the not so hot news. My CEA numbers are on the rise again. I had dropped to 89.1 and was looking for another drop from there. Instead I was greeted with a rise to 112.8. That's higher than the last 2 measurements and is a real hit to the momentum. My liver numbers are also on the rise, which isn't the best sign. Nothing dangerous yet, but it does point to something not going quite right. So these are the things that we need to watch.
Take some time this week to really focus on something or someone you love. And don't forget to tell the people that you care about how much you appreciate them.
I appreciate everyone who follows this blog and sends their thoughts and prayers our way. We sure do need them.
Jake
Wednesday, April 2, 2014
Tired
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
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
Saturday, March 22, 2014
Another reaction and encouraging numbers
Another treatment in process (#9) and another weekend of feeling like crap. Not a whole lot to look forward to, but a necessary part of the journey. Yesterday was a long day in the infusion suite. It all started with a port access and labs, followed by a visit with our Physician's Assistant. We asked questions about my headaches and the growing rashes on my stomach at each of my Lovenox injection sites. My headaches are spurring an appointment for an MRI to make sure nothing has moved into my brain. We'll get those results in a couple of weeks. As for my red, splotchy stomach…we're trying a no bandaid approach. If that doesn't work, we'll see what the next step is. All of my liver numbers are good and my blood work is normal (platelets, white count etc.). So that's all good news.
Then we headed upstairs to the infusion suite where things got a bit dicey after a routine start to the treatment. Again, it was the new drug Zaltrap. We had the nurse start it out at a slower rate as we had been instructed to when I had my last reaction and almost crashed. Sure enough, even at a slower rate I had another reaction. This one was caught early and wasn't nearly as bad, but I still got boosted up with steroids and Benadryl to stop it and stabilize me. After an hour long nap we started the drug again at an even slower rate. That seemed to work. We'll see how it works out next time.
In other (and better) news I have two really good numbers to report. My weight and CEA. I actually GAINED a pound between last treatment and yesterday! WOOOOOOO HOOOOOOO! As you know, this has been a huge struggle for me since this entire process began. With the diet changes and the minimal changes in exercise that I've made, I've seen tangible differences. It's still incredibly difficult to eat as much and as frequently as I should, but I push through the pain and keep going. So…hopefully we see the trend continue.
The other good number is my CEA cancer marker. It's gone down 17 points in the last 2 weeks from 106.1 to 89.1.
Then we headed upstairs to the infusion suite where things got a bit dicey after a routine start to the treatment. Again, it was the new drug Zaltrap. We had the nurse start it out at a slower rate as we had been instructed to when I had my last reaction and almost crashed. Sure enough, even at a slower rate I had another reaction. This one was caught early and wasn't nearly as bad, but I still got boosted up with steroids and Benadryl to stop it and stabilize me. After an hour long nap we started the drug again at an even slower rate. That seemed to work. We'll see how it works out next time.
In other (and better) news I have two really good numbers to report. My weight and CEA. I actually GAINED a pound between last treatment and yesterday! WOOOOOOO HOOOOOOO! As you know, this has been a huge struggle for me since this entire process began. With the diet changes and the minimal changes in exercise that I've made, I've seen tangible differences. It's still incredibly difficult to eat as much and as frequently as I should, but I push through the pain and keep going. So…hopefully we see the trend continue.
The other good number is my CEA cancer marker. It's gone down 17 points in the last 2 weeks from 106.1 to 89.1.
So we like this trend. :) I have a CT on Thursday and will find out the results of that the following week. Once we get those we'll be able to see if they correlate to the CEA numbers. Hopefully this means that we are stopping the cancer in it's tracks or maybe…just maybe making it back off a little bit. I'm hoping to see more good liver than before. However…being a realist, I'm prepared to see progression, knowing that the CEA number can be deceiving at times. In any case, it give me hope and sometimes that's all you need. :)
On a closing note, my McRock'nRoll was absolutely a lifesaver in it's first real test. A 3 hour museum tour. Built in seat and something to lean on were indispensable.
Always have a place to park your butt.
Jake
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
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
Saturday, February 8, 2014
Treatment #6 and positive news!
Yesterday was number 6 in my endless number of chemo treatments. It went reasonably well. I think that I'm starting to get used to this schtick. I'm starting to find the nurses that I prefer and the infusion suites that have the best view. I also found out why I prefer the left seat in the suite. The infusion pump is on the right of the seat and my port is on the right side. I never made the connection of a tube crossing over my body and the logistical challenges it introduced, just because of the seat I chose. The learning never ends. :)
We met a woman who is in a similar situation to me who had a lot to say about nutrition. She had some good ideas that we are going to try out. And some that I just can't. One specifically, that has been brought up by so many other cancer patients. Medical marihuana. Due to my job and the sensitivity that is involved with it, even prescribed medical marihuana is a no-no. I find it interesting that so many cancer patients find it incredibly beneficial for relieving a multitude of side effects. But again...absolutely not an option for me. I'd stand to lose my job, health insurance, life insurance...you get the idea. So I'll stay with my prescription opiates and various other medications and keep rollin' on.
I also have two bits of positive news today! I can walk. :) With the injections getting easier to administer and not just a week old, my leg is about 95% better. No more limping and much less pain. I'm a happy Jake. So I have a year left of the injections which I'm happy about with the increased risk caused by two of my chemo drugs. I just have to be careful about not bleeding...at all.
The second piece of good news regards that CEA number that I referenced many blogs ago. This week's number is still higher than my last measurement. But it's the amount higher that is the good news. In the last two weeks, my number rose only 9.1 points. This is the smallest rise in the number since we've been on the new chemo drug. This COULD mean that the new treatments are slowing things down. It could mean that the treatments aren't doing anything, but that something else in my body is impacting the number. That's why they call it a suggestive number instead of a diagnostic number. BUT...it makes me feel good for the weekend. And of course, since I'm a geek and I have some time on my hands, I decided to start trending it. You can see from the chart below that it was relatively low at diagnosis and spikes quickly after starting treatment. Now it's starting to level out, and the hope is that it stays level or even starts dropping.
So...While it is no sure thing. It is something small to celebrate and sometimes that's big enough to make a difference. And it makes me happy. 9.1 is a good number me this week. And now I can't wait to get labs done in two weeks. Speaking of two weeks...we will be going over my next CT results then. So...Big day for me on the 21st. Technically I won't need the CEA number because I'll have an actual diagnostic measurement. Pictures of the crap growing in my liver and colon. We'll also see if it has started to spread. My Dr. was very surprised that my lungs were still clear with the aggressiveness of it's rate of spread. As a Tuba player, I'm crossing every finger that I have that it stays out of my lungs for as long as possible. Being a realist, I do recognize that a move to my lungs is more than just a possibility, but a very good probability at this point. But I'm hoping to delay that until we figure out the liver thing.
So let's keep the good news flowing through the week. And remember that even small bits of good can do great things for you and the world around you. Stay positive and keep smilin'.
Jake
We met a woman who is in a similar situation to me who had a lot to say about nutrition. She had some good ideas that we are going to try out. And some that I just can't. One specifically, that has been brought up by so many other cancer patients. Medical marihuana. Due to my job and the sensitivity that is involved with it, even prescribed medical marihuana is a no-no. I find it interesting that so many cancer patients find it incredibly beneficial for relieving a multitude of side effects. But again...absolutely not an option for me. I'd stand to lose my job, health insurance, life insurance...you get the idea. So I'll stay with my prescription opiates and various other medications and keep rollin' on.
I also have two bits of positive news today! I can walk. :) With the injections getting easier to administer and not just a week old, my leg is about 95% better. No more limping and much less pain. I'm a happy Jake. So I have a year left of the injections which I'm happy about with the increased risk caused by two of my chemo drugs. I just have to be careful about not bleeding...at all.
The second piece of good news regards that CEA number that I referenced many blogs ago. This week's number is still higher than my last measurement. But it's the amount higher that is the good news. In the last two weeks, my number rose only 9.1 points. This is the smallest rise in the number since we've been on the new chemo drug. This COULD mean that the new treatments are slowing things down. It could mean that the treatments aren't doing anything, but that something else in my body is impacting the number. That's why they call it a suggestive number instead of a diagnostic number. BUT...it makes me feel good for the weekend. And of course, since I'm a geek and I have some time on my hands, I decided to start trending it. You can see from the chart below that it was relatively low at diagnosis and spikes quickly after starting treatment. Now it's starting to level out, and the hope is that it stays level or even starts dropping.
So...While it is no sure thing. It is something small to celebrate and sometimes that's big enough to make a difference. And it makes me happy. 9.1 is a good number me this week. And now I can't wait to get labs done in two weeks. Speaking of two weeks...we will be going over my next CT results then. So...Big day for me on the 21st. Technically I won't need the CEA number because I'll have an actual diagnostic measurement. Pictures of the crap growing in my liver and colon. We'll also see if it has started to spread. My Dr. was very surprised that my lungs were still clear with the aggressiveness of it's rate of spread. As a Tuba player, I'm crossing every finger that I have that it stays out of my lungs for as long as possible. Being a realist, I do recognize that a move to my lungs is more than just a possibility, but a very good probability at this point. But I'm hoping to delay that until we figure out the liver thing.
So let's keep the good news flowing through the week. And remember that even small bits of good can do great things for you and the world around you. Stay positive and keep smilin'.
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
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