Note: this is a more technical post about what I've been going through in the past 3 days, it includes descriptions which can seem disgusting as they deal with stool and urine, reader discretion is advised.
Things have been changing recently. Change isn't very good. A few days ago , on Friday, they've found liquid in my abdomen which was causing me pains and nausea. In addition, tests showed that there was stool content found in my urine. Put together it didn't paint a great picture - the Cancer was causing small perforations where liquid was flowing into my abdominal cavity - from the liquid they are giving my IV in, but also from my small intestine. For a while it was collecting in my feet, so I started wearing compression stalkings, which moved some of the pressure into my abdomen as well, which in turn was giving me compression pains. Some of the liquid made it into my bladder and consequentially I have been urinating stool .
Around my abdomen there is a sheet of cancer tissue which in some ways might have been serving as a protective layer in some ways.
On Friday , when all this was happening the doctors came in to my room and had a long discussion with us about what was going on and the risks involved. It seemed like we were getting to the end. They suggested that I have my abdominal cavity drained - basically have a doctor use ultrasound to identify the biggest pocket of liquid in my abdomen and drain it with a special needle. It would probably not heal anything, but at lease make the bloated feeling better and gave them a better idea what the liquid is made of. There were risks involved. I could perforate something during the procedure and not even come fully out of it. We were worried, we were having a scare. Family members were called, flights were booked. With much trepidation and with consultation with my family I agreed to go ahead with the procedure. Later that day I was wheeled into a separate starting room where I was given local anesthesia and using ultrasound a very qualified doctor identified and drained the largest pocket of liquid in my cavity.
They were able to drain 2.6 liters of mostly clear liquid out of me. When my regular specialist doctor heard of it she declared it the best possible outcome.
They said it was a good sign, and with that sign came a sigh of relief. We called off the scare, family members rescheduled flights, good stuff were happening. Until today.
As today started, things appear again to be bad. Earlier today I had what looked like more stool content in my urine. Also, I started coughing. I had been coughing before, but this seems worse - I have been bringing up phlegm, which I haven't been before. I have been on the strongest antibiotics so far, as a prophylactic and as treatment. If there is no stronger antibiotic for this cough then it could potentially develop into pneumonia and take over my systems quick. I wasn't sure about it meant, and as the doctors took time to come see me, I was getting more worried. When I finally saw someone they said that what I thought was stool content is probably just some blood and not that bad, not worth even taking a sample. They suggested a urinating medication that will reduce the bloat in my feet and abdomen, which I agreed to and seems to be working well. I was told the cough is probably just the lungs clearing themselves and not a source of worry either, and it does seem to be better since. All in all the symptoms are looking better, which is a positive. My mental state though is not doing that well.
But i'll write about that in a separate article.
Note: I am going to post this update on my blog but not on Facebook, because of the nature and content of this kind of article. I'll post probably a separate article about dying on the platform which I will put on Facebook separately.
Sunday, July 28, 2019
Monday, July 15, 2019
A Scare
A Scare. It’s when something starts happening beyond your control. It’s when events starts rolling one into another and then start spinning and spinning, like a snowball down a hill, a ball of yarn in reverse. You look up in the distance and where you expect clarity you see insecurity, where you hope for an out you see confusion, where you want a solution you see only how things can get worse. And then you get scared. Fear is the natural result, fear is good, fear keeps you on your toes, it keeps you engaged with the matter at hand, and if used right it’ll stop you from just running away from the situation.
We had a scare.
It was a nice warm day outside Friday, I went out to enjoy the sun with my parents and sister. On the way out I tripped and the cable pushing on my stomach pouch pulled. A little while after that I noticed blood coming out of the tube from my stomach, the cable connecting the stomach cable with the repository bag detached and I found myself outside with a detached tube coming out of my stomach and blood clots coming out of the tube. We headed quickly back in, but it wasn’t clear the bleeding was stopping at all. It seemed to keep on going . Sometimes it would slow down a bit, sometimes it looked like it was over. Then it would start again - just red blood streaks coming out. A scare. A fear, a mini terror.
We made it back to my bed and called in the nurses. They where doing a great job at assessing, calming, helping out. They reconnected the cable and the bag and consulted doctors over the phone who said to keep on monitoring it throughout the night; I was put on bed rest and told to just keep on monitoring it over the night. Over night there were some more streaks, but all subsequent nurse shifts agreed that it is winding down, and maybe not a concern at all. One nurse pointed out that I am on high dose of anti-coagulants, so bleeding streaks are reasonable at these high doses.
Eventually everything calmed down. The bleeding stopped, the doctors agreed it was just a small clot left over from the surgery, and there didn't seem to be any more reason for concern. I resumed what life looks like resumed for me right now, which is much and not much. A routine almost, but not a great one.
I am spending most my time in bed, mostly because I don't have the energy to do much more. I am getting pain medications on a regular basis every 4 hours. I can ask every hour or so for pain medication breakthroughs - an earlier lower dose of pain medications. It becomes a choice every couple of hours or so - do I ask for an earlier dose of medication or wait till my regular higher dose. The doctors and nurses encourage me to just take what I feel I need, but I'm not always sure what it is that I need, what it is that I can stand. Can I take more pain? probably, but is it worth it? more pain medication means I will be more drowsy, it means that it is more likely the doctors will increase the regular pain dose which will leave me with less room for future increases in doses, but is that really a bad thing?
Right now there is little clarity on what will happen next. Typically a patient in my situation just gets weaker and weaker and more and more in pain. This usually ends up in an increase of their usage of pain medications, which makes them more drowsy, more sleepy, and hence less aware of their surroundings. They then spend more time in bed as the disease progresses.
I decided to try to fill out those hours where I am up and aware with some kind of activity, some kind of project to work on. When my wife and children come to visit, I try as much as possible to get out of bed and spend the short visitation time with them. I spend as much time as I can with my parents, I play music, I started updating our family tree project online, I teach our kids how to solve the Rubick's cube, I am clearing some online file folders - basically projects to keep me engaged with life. At the same time I have to ask myself if those projects are just a way of avoiding dealing with the reality of life - or death in my case. Am I doing the best for my family by fighting? after all, uncertainty is hurting them as well, they can't make plans for the rest of the summer because no one knows how much time I have left.
We don't know what time will bring. The nurses are trained to identify a state of 'hours to immediate days', at which point my family will be called in. That could be the end of all of my projects, and that would be the real ultimate scare.
We had a scare.
It was a nice warm day outside Friday, I went out to enjoy the sun with my parents and sister. On the way out I tripped and the cable pushing on my stomach pouch pulled. A little while after that I noticed blood coming out of the tube from my stomach, the cable connecting the stomach cable with the repository bag detached and I found myself outside with a detached tube coming out of my stomach and blood clots coming out of the tube. We headed quickly back in, but it wasn’t clear the bleeding was stopping at all. It seemed to keep on going . Sometimes it would slow down a bit, sometimes it looked like it was over. Then it would start again - just red blood streaks coming out. A scare. A fear, a mini terror.
We made it back to my bed and called in the nurses. They where doing a great job at assessing, calming, helping out. They reconnected the cable and the bag and consulted doctors over the phone who said to keep on monitoring it throughout the night; I was put on bed rest and told to just keep on monitoring it over the night. Over night there were some more streaks, but all subsequent nurse shifts agreed that it is winding down, and maybe not a concern at all. One nurse pointed out that I am on high dose of anti-coagulants, so bleeding streaks are reasonable at these high doses.
Eventually everything calmed down. The bleeding stopped, the doctors agreed it was just a small clot left over from the surgery, and there didn't seem to be any more reason for concern. I resumed what life looks like resumed for me right now, which is much and not much. A routine almost, but not a great one.
I am spending most my time in bed, mostly because I don't have the energy to do much more. I am getting pain medications on a regular basis every 4 hours. I can ask every hour or so for pain medication breakthroughs - an earlier lower dose of pain medications. It becomes a choice every couple of hours or so - do I ask for an earlier dose of medication or wait till my regular higher dose. The doctors and nurses encourage me to just take what I feel I need, but I'm not always sure what it is that I need, what it is that I can stand. Can I take more pain? probably, but is it worth it? more pain medication means I will be more drowsy, it means that it is more likely the doctors will increase the regular pain dose which will leave me with less room for future increases in doses, but is that really a bad thing?
Right now there is little clarity on what will happen next. Typically a patient in my situation just gets weaker and weaker and more and more in pain. This usually ends up in an increase of their usage of pain medications, which makes them more drowsy, more sleepy, and hence less aware of their surroundings. They then spend more time in bed as the disease progresses.
I decided to try to fill out those hours where I am up and aware with some kind of activity, some kind of project to work on. When my wife and children come to visit, I try as much as possible to get out of bed and spend the short visitation time with them. I spend as much time as I can with my parents, I play music, I started updating our family tree project online, I teach our kids how to solve the Rubick's cube, I am clearing some online file folders - basically projects to keep me engaged with life. At the same time I have to ask myself if those projects are just a way of avoiding dealing with the reality of life - or death in my case. Am I doing the best for my family by fighting? after all, uncertainty is hurting them as well, they can't make plans for the rest of the summer because no one knows how much time I have left.
We don't know what time will bring. The nurses are trained to identify a state of 'hours to immediate days', at which point my family will be called in. That could be the end of all of my projects, and that would be the real ultimate scare.
Tuesday, July 9, 2019
Still Around
I'm still around, but not sure for how long.
The pain is steadily going up, and with that the pain medications. There has also been an increase in nausea.
I have been getting regular and breakthrough medication for both extra pain and nausea. They were both making me drowsy though. I have been spending more time in bed, more time being in pain. The medical team here is amazing. They are so caring and making sure I don't feel bad about asking for help when I need it.
I haven't eaten or really drank in weeks, getting my nutrition through TPN and IV fluids. It means that I don't have anything to throw up even when I'm nauseous, which is kind of a plus.
When I get my medication, especially the pain medication, it makes me sleepy. Sleeping is nice. Sleep means not feeling the pain. I don't always remember my dreams, but I feel they are ok, comforting. The idea of slipping into a nice sleepy dream and not waking up feels more and more appealing, a silent goodbye of sorts, much better than the prospect of going out in pain. Maybe when the sleep is helped by the pain medication there is less dreams involved, maybe it's a different kind of rest.
Today, at the suggestion of my doctor I had a special procedure done. It was a quick and relatively painless procedure that left me with a tube coming out of my stomach that the nurses can use to relieve the pressure and nausea from my stomach every few hours. I am still waiting to see the results of the procedure, but the doctor is hopeful that it will relieve the recent increase in pain and nausea. I am hopeful.
On another plus side, I completed all the 'last letters' I really wanted to get done. These letters currently come in three parts : last individual fairwell letters that are meant as a collection of thoughts for the child/person\family - what I want for them, my hopes and dreams for them, what our joint experiences have been, what I see as their best qualities, what I wish for them to continue and develop, how I wish to see them grow etc. ; Then there are the Bar/Bat Mitzvah letters - letters to be read during their ceremony should they complete their Bar / Bat Mitzvah ceremony ; and 'last letter' to the world that is meant as a goodbye letter posted to this blog or Facebook, or both, but basically is meant for all of you.
There are other projects that I have considered for myself to get done, but their importance became more questionable - originally I was going to write a letter for each birthday age of each kid up until 18 or 20, but when I realized how many letters that would mean I updated the project to 'just get the first goodbye letters done. Now that those are done I'm questioning if I should leave it at that or add any other milestone events in between. For example, some family members recommended I also write letters for age transitions - like early and late pubescent letters - A pubescent letter would be about entering puberty, the transitions involved in becoming an emotionally mature adult, becoming responsible for your actions and for the messages that you are communicating both verbally and non-verbally. etc. And there are the option of writing wedding letters which will be about commitment and devotion and how they see those playing a part in being part of society.
I feel I might be over-thinking this, I'm not sure. What value would those extra letters really add to the totalitary of the letter writing? All of those letters are important, but are at a different time scale and meaning for the person, and as such by the time they are read they might not be as applicable or relevant, coming from a dead relative and all.
These are just my thought these days, through the daze of the pain and nausea that I'm hoping will subside a bit.
As usual, I love and appreciate you all,
Thank you ,
Amir
The pain is steadily going up, and with that the pain medications. There has also been an increase in nausea.
I have been getting regular and breakthrough medication for both extra pain and nausea. They were both making me drowsy though. I have been spending more time in bed, more time being in pain. The medical team here is amazing. They are so caring and making sure I don't feel bad about asking for help when I need it.
When I get my medication, especially the pain medication, it makes me sleepy. Sleeping is nice. Sleep means not feeling the pain. I don't always remember my dreams, but I feel they are ok, comforting. The idea of slipping into a nice sleepy dream and not waking up feels more and more appealing, a silent goodbye of sorts, much better than the prospect of going out in pain. Maybe when the sleep is helped by the pain medication there is less dreams involved, maybe it's a different kind of rest.
Today, at the suggestion of my doctor I had a special procedure done. It was a quick and relatively painless procedure that left me with a tube coming out of my stomach that the nurses can use to relieve the pressure and nausea from my stomach every few hours. I am still waiting to see the results of the procedure, but the doctor is hopeful that it will relieve the recent increase in pain and nausea. I am hopeful.
On another plus side, I completed all the 'last letters' I really wanted to get done. These letters currently come in three parts : last individual fairwell letters that are meant as a collection of thoughts for the child/person\family - what I want for them, my hopes and dreams for them, what our joint experiences have been, what I see as their best qualities, what I wish for them to continue and develop, how I wish to see them grow etc. ; Then there are the Bar/Bat Mitzvah letters - letters to be read during their ceremony should they complete their Bar / Bat Mitzvah ceremony ; and 'last letter' to the world that is meant as a goodbye letter posted to this blog or Facebook, or both, but basically is meant for all of you.
There are other projects that I have considered for myself to get done, but their importance became more questionable - originally I was going to write a letter for each birthday age of each kid up until 18 or 20, but when I realized how many letters that would mean I updated the project to 'just get the first goodbye letters done. Now that those are done I'm questioning if I should leave it at that or add any other milestone events in between. For example, some family members recommended I also write letters for age transitions - like early and late pubescent letters - A pubescent letter would be about entering puberty, the transitions involved in becoming an emotionally mature adult, becoming responsible for your actions and for the messages that you are communicating both verbally and non-verbally. etc. And there are the option of writing wedding letters which will be about commitment and devotion and how they see those playing a part in being part of society.
I feel I might be over-thinking this, I'm not sure. What value would those extra letters really add to the totalitary of the letter writing? All of those letters are important, but are at a different time scale and meaning for the person, and as such by the time they are read they might not be as applicable or relevant, coming from a dead relative and all.
These are just my thought these days, through the daze of the pain and nausea that I'm hoping will subside a bit.
As usual, I love and appreciate you all,
Thank you ,
Amir
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