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
Friday, June 28, 2019
More thoughts about the end
Life on the edge of the end isn't easy. Every day could be the last, or the beginning of the last; Every pain can be temporary or can be the start of my last life entry. It’s so hard to tell. Currently I have a complete intestinal blockage and am getting TPN (Total Nutrition Supplement - basically nutrition and hydration directly to my veins), which means that I am hooked up to a machine most of the day that likes to beep and wake me up in the middle of the night, but is giving me nutrition that is bypassing my blocked intestines.
The prognosis so far hasn't changed - I might get a ruptured intestine or a ruptured stomach at any moment, at which point we might be talking about how many hours I have left. If that happens I will likely be in excruciating pain, have to call in relatives hoping they will make it back to see me one last time, knowing that they might only be able to make it to the funeral or later and not to talk to me face to face.
The other, slightly more likely scenario, is a slowish progression towards the end. There is a chance of a massive infection or growth, a hardening of the disease, or a type of starvation in spite of the TPN. The disease itself is making me tired as well, so It's hard to tell how much of the exhaustion is coming from what. As things stand there is a layer of cancer surrounding my small intestine, combined with a complete intestinal blockage it is offering some kind of protection as the cancer is blocking the potential infection from coming out of the intestine. At the same time it might be presenting the weakest spot to the outside of the intestine so that could be a good thing or a bad thing. Either way, there is no good ending to this.
I am tired a lot, Not getting to eat , just drinking small sips of water and Jello. I am worried about the end. I am worried about being anxious and feeling scared. I am taking some medication for anxiety and discussing with my doctor and Noemi how much more medication I will be taking as things will get worse.
This is also horrible for my family. My parents, my wife, my children, they want to take care of me but at the same time they are worried so much about losing me. It's so hard to go through it through their eyes. I can't imagine what it's like watching your spouse, parent, child slowly die in front of you, be constantly in and out of pain, watching them struggle to manage and to put on 'a face', not knowing which day is theirs and yours together last. Noemi will have to make a decision about my medication and level of comfort towards the end. I had a conversation about that with her yesterday. She seems very mature about it - she wants to respect my wishes which currently are to in fact feel comfortable enough to not feel too anxious about what is going on while it is happening, which the palliative ward has good options for. At the same time she is very worried for me. Yesterday for example was the last day of elementary school for Theo and Adilyah. I left early to see the last school assembly. Partly because I was out earlier than usual I didn’t feel so well, my belly felt a bit more distended. I shared that with Noemi and she soon called my doctor who then asked me not drink anything until this morning so that she could examine me (I’m on the otherwise ‘drink as you tolerate it’ regiment), which speaks to Noemi's worry for me and what to me feels like anxiety about my health, which is very understandable.
The day before yesterday the children and Noemi came over to the hospital. We played some card games, chatted, goofed off. It was really nice. We took some nice photos of ourselves together. At the end of the day I looked at the photos and couldn't say if they were one last episode of a good day, or the last time we would have this kind of warm moment together. Everything carries with it now this aura of a potential last, though that can be rough, it sometimes helps when it's obviously a last moment. Take going to Theo and Adilyah's last day of elementary school, and my last school assembly ever. That last statement might sounds defeatist, but I find that that attitude can also help - I know that I won't go to another school assembly, which means I can enjoy the last one I do go to for what it is. Even though I was in pain and discomfort throughout part of it, I also got to see and enjoy Theo and Adilyah's last day of school. And experiencing it partly through their dad's eyes was obviously very difficult for them - Adilyah started crying, Theo was emotional in a very Theo way - sharing what he was going through, talking about wanting to put my tie on him and realizing it was still too big. These experiences are very real, and very meaningful to them. They will be remembered as both sad 'last of' memories but also as pleasant moments that they got to share and tell their dad about it in the last few days/couple of weeks of his life. That has meaning, and it has a lot of meaning to me.
My parents (and Noemi) want to take care of me. I totally understand that - isn't that what you would want for your sick child? but they are limited to what they can do, and they are struggling with that. They can't make the pain go away, they can't make the emotional wrench in my gut disappear, they can't make the fear pass. So they do what they can do - comfort, rub my back, tell me continuously they love me and care for me. We all know what is behind it - an inability to foster change through will alone. Again, I can't imagine what it would be like to go through something like that with my own child/spouse, but that is the most they can give me. At the same time they appear to be trying to hide these feelings of inability to make changes from me. It's as if they pretend I that if I don't see how difficult it is for them not to accept what they can't change then I won't feel that possible crushing inability within them as well, but I do. We end up coming back to it. Over and over again. There is not much to be done, acceptance is a bitch, whether we accept that or not.
And yet struggling with acceptance is something we all have to deal with. Yes, I am afraid, we all are and all will be. Yes, I am very anxious, we all are and all will be more. At the same time I am working on my own level of a form of acceptance. I will close my eyes at one point and not open them. Barring any supernatural existence I will be gone. I will leave what I can leave for them behind -be it financial, organizational, or in a 'last letter' form, I will leave it and have to hope that they will manage with it. I will have no control on whether or not and to what degree they will actually manage, because I will be no longer more there for them, no longer on the other end of the phone or text, giving my two cents, trying to fix things or give advice. I can go back and forth on the merits of it but one thing is for sure - it will be what it will be. Again, prayer and supernatural belief aside.
And so I am back to waiting for my last moments, for what they are worth, and enjoying the last moments I get with my family and friends for all that they are worth, and hoping that I will be able to make the best of them, because that is what I have, and that is what I get to live with, whether I accept that or not.
As usual and always - I love you all, and I hope I will have more to add later going forward.
With you,
Amir
The prognosis so far hasn't changed - I might get a ruptured intestine or a ruptured stomach at any moment, at which point we might be talking about how many hours I have left. If that happens I will likely be in excruciating pain, have to call in relatives hoping they will make it back to see me one last time, knowing that they might only be able to make it to the funeral or later and not to talk to me face to face.
The other, slightly more likely scenario, is a slowish progression towards the end. There is a chance of a massive infection or growth, a hardening of the disease, or a type of starvation in spite of the TPN. The disease itself is making me tired as well, so It's hard to tell how much of the exhaustion is coming from what. As things stand there is a layer of cancer surrounding my small intestine, combined with a complete intestinal blockage it is offering some kind of protection as the cancer is blocking the potential infection from coming out of the intestine. At the same time it might be presenting the weakest spot to the outside of the intestine so that could be a good thing or a bad thing. Either way, there is no good ending to this.
I am tired a lot, Not getting to eat , just drinking small sips of water and Jello. I am worried about the end. I am worried about being anxious and feeling scared. I am taking some medication for anxiety and discussing with my doctor and Noemi how much more medication I will be taking as things will get worse.
This is also horrible for my family. My parents, my wife, my children, they want to take care of me but at the same time they are worried so much about losing me. It's so hard to go through it through their eyes. I can't imagine what it's like watching your spouse, parent, child slowly die in front of you, be constantly in and out of pain, watching them struggle to manage and to put on 'a face', not knowing which day is theirs and yours together last. Noemi will have to make a decision about my medication and level of comfort towards the end. I had a conversation about that with her yesterday. She seems very mature about it - she wants to respect my wishes which currently are to in fact feel comfortable enough to not feel too anxious about what is going on while it is happening, which the palliative ward has good options for. At the same time she is very worried for me. Yesterday for example was the last day of elementary school for Theo and Adilyah. I left early to see the last school assembly. Partly because I was out earlier than usual I didn’t feel so well, my belly felt a bit more distended. I shared that with Noemi and she soon called my doctor who then asked me not drink anything until this morning so that she could examine me (I’m on the otherwise ‘drink as you tolerate it’ regiment), which speaks to Noemi's worry for me and what to me feels like anxiety about my health, which is very understandable.
The day before yesterday the children and Noemi came over to the hospital. We played some card games, chatted, goofed off. It was really nice. We took some nice photos of ourselves together. At the end of the day I looked at the photos and couldn't say if they were one last episode of a good day, or the last time we would have this kind of warm moment together. Everything carries with it now this aura of a potential last, though that can be rough, it sometimes helps when it's obviously a last moment. Take going to Theo and Adilyah's last day of elementary school, and my last school assembly ever. That last statement might sounds defeatist, but I find that that attitude can also help - I know that I won't go to another school assembly, which means I can enjoy the last one I do go to for what it is. Even though I was in pain and discomfort throughout part of it, I also got to see and enjoy Theo and Adilyah's last day of school. And experiencing it partly through their dad's eyes was obviously very difficult for them - Adilyah started crying, Theo was emotional in a very Theo way - sharing what he was going through, talking about wanting to put my tie on him and realizing it was still too big. These experiences are very real, and very meaningful to them. They will be remembered as both sad 'last of' memories but also as pleasant moments that they got to share and tell their dad about it in the last few days/couple of weeks of his life. That has meaning, and it has a lot of meaning to me.
My parents (and Noemi) want to take care of me. I totally understand that - isn't that what you would want for your sick child? but they are limited to what they can do, and they are struggling with that. They can't make the pain go away, they can't make the emotional wrench in my gut disappear, they can't make the fear pass. So they do what they can do - comfort, rub my back, tell me continuously they love me and care for me. We all know what is behind it - an inability to foster change through will alone. Again, I can't imagine what it would be like to go through something like that with my own child/spouse, but that is the most they can give me. At the same time they appear to be trying to hide these feelings of inability to make changes from me. It's as if they pretend I that if I don't see how difficult it is for them not to accept what they can't change then I won't feel that possible crushing inability within them as well, but I do. We end up coming back to it. Over and over again. There is not much to be done, acceptance is a bitch, whether we accept that or not.
And yet struggling with acceptance is something we all have to deal with. Yes, I am afraid, we all are and all will be. Yes, I am very anxious, we all are and all will be more. At the same time I am working on my own level of a form of acceptance. I will close my eyes at one point and not open them. Barring any supernatural existence I will be gone. I will leave what I can leave for them behind -be it financial, organizational, or in a 'last letter' form, I will leave it and have to hope that they will manage with it. I will have no control on whether or not and to what degree they will actually manage, because I will be no longer more there for them, no longer on the other end of the phone or text, giving my two cents, trying to fix things or give advice. I can go back and forth on the merits of it but one thing is for sure - it will be what it will be. Again, prayer and supernatural belief aside.
And so I am back to waiting for my last moments, for what they are worth, and enjoying the last moments I get with my family and friends for all that they are worth, and hoping that I will be able to make the best of them, because that is what I have, and that is what I get to live with, whether I accept that or not.
As usual and always - I love you all, and I hope I will have more to add later going forward.
With you,
Amir
 |
| Last hugs after card night at hospital |
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| Adilyah playing in the last assembly. Sitting middle in torquoise shirt |
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| Theo getting graduation certificate |
Wednesday, June 26, 2019
Palliative Unit and some more bad news
In late May I arrived at the palliative unit at the Grey Nuns hospital. Here, they are taking care of my symptoms - making sure I am pain free and nausea free as much as possible and as comfortable as possible. It’s not like a hospice, which would be just focused towards end of life. I can still get some treatment like antibiotics and fluids, but it’s not like a full hospital with goals of making me better. You have to have limited time to be here.
They have been doing a great job. They continued the long term steroids. When it was clear I had an infection they started me on a course of antibiotics as well until I started feeling better. I was allowed to go on daily passes home for several hours to see the house and the family. I had family over. My parents arrived mid May, and my sisters came all the way from Israel for a two and a three week visit around that time as well, and the palliative care unit were very accommodating of them as well. We had a nice small immediate family reunion, which was really nice.
At some point there were talks of going home permanently until the major symptoms return. It was clear any release would be temporary, but the idea of sleeping in my bed again on a regular basis was just so appealing, I was interested in giving it a go. In consultation with the wonderful and encompassing team we decided to have a temporary two day trial-pass where I went home from Friday morning to Sunday morning. I got to spend a couple last nights at my own bed, which was very nice. The first night was peaceful and relatively painful. But the last night wasn’t.
During the night of Saturday June 15th, I started feeling very nauseous, the pain increased and my bowels stopped moving. I ended up going back to the hospital at 6 am that day to get an anti-nausea medication injection. After several tests they found that the blockage has returned. The doctors increased the steroids and restarted the antibiotics (whose run ran out on the previous Friday), which made the nausea go down, but the pain did not subside and my bowels still weren’t working. That is when they ordered a CT.
The results of the CT were not good. They found cancer growth on my stomach which created an air pocket in the lining between my stomach and the outer sheet protecting the stomach. Currently it’s contained and held at bay by the cancer, but it’s dangerous. It can in theory rapture at any time, releasing stomach acid into my abdominal cavity. At that point I will have days or hours left. It can also be contained for a few more days or a couple of weeks. We don’t know, but I am definitely towards the end.
The head of the unit recently rotated and we got to summarize my current predicament - The blockage is definitely back and most likely permanent. She believes the previous prognosis given by the most recent head is still valid - I have days to a few weeks left. My greatest risk factors are ruptured intestines from bowels that are just refusing to move, or ruptured stomach, though ruptured stomach is much less likely to happen.
I have been put on a non-food diet - I am not eating anything and drinking only little.
This is why I’m finalizing these articles and publishing them now. I hope to be able to write more. If not, then know how much I love you all and appreciate all that you have meant in my life. You have been an amazing group of family, friends, and acquaintances. A person could not have asked for more.
Please remember me, and remember my legacy - be nice and tolerant to your fellow humans, be courteous and caring, be loving and forgiving. Take care of your bodies, minds, and soul. Protect your family and yourself, get insurance. Spend time with your family.
I will probably write another article here and update Facebook with it. I love you all and appreciate you all, I hope you show that love to your fellow human inhabitants as well.
With much love and devotion,
Amir
A trip, a blockage, a change of status, a change of place
The trip was a great success, I got to show my kids new parts of the country they haven’t seen before, I got to say goodbye to many of my friends, and we had a large family reunion with my cousins, second cousins and their kids. It warmed my heart to see my kids play with their first and second cousins, made me think of future family reunions my children will attend without me.
Towards the end of the trip I started feeling worse than usual, my pain started getting bad, when we returned to Edmonton I went to the ER a couple nights later. After multiple tests, the doc said I probably just have a lung infection. He sent me home with some antibiotics. I was home but the pain was not subsiding, a few days later I was in so much pain I couldn't even drive, I got a ride to the emergency room from a friend. In the ER they identified a bowel obstruction and admitted me to the hospital. Apparently the cancer has spread enough to create a sort of sheet that surrounded my small intestine, hardened it, and created a blockage. They put a tube through my nose to my stomach to relieve the pressure for a couple of days and started me on a short course of steroids for a few days. The steroids did their job and relieved the blockage. After I was done the steroids course I was released home with a warning that most likely the obstruction will come back. I just didn’t realize how quickly it would.
It took barely a week for the nausea and pain to return. One night in mid May it was bad enough that my wife called EMS who took me back to the hospital for a longer term admittance, this time on long term steroids.
In between all these admittances I was trying to restart my chemo. My oncologist wouldn’t treat me while I was admitted, and once I was released, I only had one opportunity to book and make an appointment with her. The other appointment, the one to run more tests and restart my chemo, happened while I was readmitted, so I had to cancel that appointment. As a result I hadn’t had a chance to restart chemotherapy since I stopped it before my trip. I have been now two months without treatment, and doctors were starting to have the ‘hard’ conversations with me. In the one meeting I did have with my oncologist between early and mid May I agreed to change my goals of care from an ‘R’ status which would meant that hospitals would attempt to resuscitate me if my heart stops working and will intubate me if needed, to an ‘M’ status which would preclude those two options. In my last admittance, during the second obstruction which was while I was at the UofA, the conversation of whether or not I should be undergoing any treatment came up. Treatment was harsh, with all the nausea and pain that it brings, it can and has been shown to reduce life expectancy in the later stages. If I forgo treatment, I would be eligible for a bed in the palliative unit - where they care for my symptoms and make sure I stay comfortable. I wasn’t keen on going that route, but as I could see the strain on my family, and the dire prognosis (The attending physician predicted I had about a month around that time), I agreed to forgo treatment and try and get a palliative bed. It probably was the best decision, and it was supposed to be temporary, but it turned out to be probably the last hospital move I would ever make.
Palliative Diagnosis
I was admitted to the surgical recovery ward an hour after coming out of surgery. I called my wife and parents and updated them that I was out and what that probably meant, they headed straight back. I saw my surgeon with just my parents in the room, and she confirmed my suspicions. When they opened me up they found many, many more dots, ‘thousands’. It was too much to take out, it was too much to even attempt the hot chemo as the hot chemo that would have been attempted would have been the same kind of chemo I had been getting through IV all those horrible months, the same chemo that had obviously failed. I was now officially a palliative cancer patient. I would probably be given palliative chemo but basically - I was going to die soon, some time in the following year or two.
Facing off your own mortality is hard; Realizing you are not going to be there for your kids is much harder. I felt terrible for them more than for me. My youngest was about to turn 4, my 13 and 11 year old were too young to lose a parent, to have to live most of their life with a memory of a dad long gone, to have to grow up without me in their life. When my wife got the news she was in a car. She felt she had to stop the vehicle, get out and scream on the side of the highway to express the pain. This was not an easy time.
But I still wanted to fight for as long as possible. My oncologist discussed with us our palliative chemo options - which is basically chemo that is just meant to prolong my life and not to save it. There were a few options. Statistically I would have a year or two from diagnosis, but it was questionable if you go by the initial cancer diagnosis, or by the stage IV diagnosis. I consulted with some other doctors, famous oncologists in New York (Dana Farber), Boston (Sloane Kettering) and Israel (heads of famous oncological departments as well as the famous Feurer and Fisher), and they supported that decision. The rest of my life will be on chemo, or so I thought.
Recovery was quick as there was no chemo used, just a small laparoscopic cut. I was out of hospital a week later.
A month or so later, in September 2018, I took my daughter on a weekend trip to San Francisco. Other than taking regular pain medications I was functioning normally. We walked the streets of the beautiful port city, a family member we met there commented that had he not known he would never have guessed I wasn’t healthy. The CTs were still clear as the dots were too small to show up, yet they were growing and spreading constantly in the background.
I started chemo soon after we returned. Again I would get infusions every two weeks, again I would feel sick and nauseated for several days following each injection, then slowly recover in the following few days, with some last good days before I had to go back and start the next round.
The first CT with negative results came back within a couple of months. Growth was seen next to my stomach and liver. My oncologist switched me to another type of palliative chemotherapy. Two months after that, a CT came back showing that the cancer was growing still, and has expanded to one of my ribs. In March, my chemotherapy treatment was switched again to a semi-experimental chemo and I started radiation for the growth in the rib.
I started putting things in place for after I was gone. I red worked my will, started writing letters for what to do after I was gone, started working on farewell letters to my family and to individual members, started throwing away old papers and binders and cleared my office to leave room for a bedroom for one of the kids. By going over all my old files I got to review my life and how my choices created my past and by extension - formed my present.
We went on a last trip back to Israel to say goodbye to my family there. Before the trip I stopped my chemo so I wouldn’t be dealing with the symptoms of the chemo. Little did I know that would be my last dose ever.
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