Our care has now been moved over to palliative care. All the rugs prescriptions are now in their hands.

We met with Kelly, the nurse, and Dr. Julie Ridley, and a fine meeting it was.

They made modifications to my pain medication. Had a short muffled laugh at using Tylenol for pain medication. It turns out that steroids that I was on confuse the body a bit as to the difference between day and night. Helps explain why I keep waking up at three and am unable to go back to sleep. This steroids are gone, replaced by a single pill of another one. The same steroid I was given to ease the absorption of the Chemo drugs. I am to take one a day for about a week than see if I can reduce to half a pill a day.

Dilauded is still in play. I am to take a pill twice a day, every twelve hours to be specific. These are time release pills that work, you guessed it, for twelve hours. They are 3mg dosages. I have also been prescribed Zantac. It turns out all these drugs may give me an ulcer and the latter drug helps prevent that. The Lactulose is still in effect, my heavy duty Drano.

The cancer is very aggressive and moving fast. The doctor was very emphatic that I should eat anything I want ad not worry about much. Take as much laxative as needed. As many pain killers as required. Not much can go wrong. There is a risk of addiction, funny people. I asked if there was a risk of growing some sort of immunity tot he drugs. She laughed at the notion. The doses I am getting are tiny compared to what is required to grow that sort of immunity.

We have also ordered an oxygen tank that will be delivered today. Better to have one than not. I do not have to use it if I do not need it. It will placed on the second floor, with the tubes reaching the first and third floors easily. I am not sure why I find the installation of the oxygen so hard to take. But there it is. My breathing is a lot more even since I have started the new drugs.

Finally, I have been given a 1mg dose of the Dilauded for emergency use. This pill is fast acting and its effects should last about an hour. This is just in case I ma in pain between drug intake.

The first night on the new drugs was a disaster. The Dilauded did not work, nor did the emergency rations. I took two of those, then resorted to Extra Strength Tylenol. I was in extreme pain, all up my right rib cage. The Tylenol did the trick and I was able to sleep more or less, waking up every hour for the bag, and for taking a pill every four hours. We called the doctors in the morning and were told that it takes about 24 hours for the drug changes to take effect. They were right. Yesterday was almost normal. Last night was peaceful, and today looks good. I am able to behave almost like a normal person. Still cannot have long conservations as I run out of breath at some point.

Dr. Ridley was amazing. I told her I had nothing but amazing medical attention so far, so she has to raise her bar. Lucky for me she laughed.

As usual, no signs of anything resembling death in me. Lungs are clear and so on. I look good, behave well, walk and talk like I am still alive. Except for the liver. I developed finger cramps while in Atlanta. Came out of nowhere. I was holding a book in my left hand and could not open my fingers to release the book from my Stars Wars death grip.I massaged my fingers until they opened up and the cramp dissolved.  This happened on a couple of occasions, and always in the left hand.

Same thing happened when we cam home, except in the right hand. It happened again last night in both hands at the same time. I put it down to the steroids inflaming everything.

Dr. Ridley looks a bit puzzled. She asked if I was suffering from tremors as well, which I am not. She made me hold out my arms in front of me with my fingers extended to the ceiling. She then put her hands against mine and said there were definitely slight tremors there. Blame the drugs? Hell no. Back to the liver. The liver is beginning to not behave itself. She looked at and remarked that I do not have jaundice. Yet. Another part of the puzzle. I am dying but not showing any signs of it.

She was not in favour of our vacation destination. She would have preferred a location from which we could drive home. There is a danger of the airlines refusing us access if I look too sick. Jaundice would qualify in that category. We can always hire a driver to bring us home. Fo’ad suggested we can call him and he would drive us home. There is nowhere within driving distance that would qualify as a sunny destination. Fo’ad suggested we look at the Carolinas. Fly to Atlanta and drive out there. Only a three hour drive. I laughed. This days are long gone. Cannot do a three hour drive. How sad is that?

Everything keeps coming back tot he liver. It is inflamed, irritating everyone else in the body. Lying on my sides causes the liver to put pressure on the area beneath it as gravity takes its toll, sending shooting pains up one side or the other. Pain killers help. Someone suggested that they only help mask the issue. Mask away, I say.

We are cleaning up my office today to make room for the oxygen. My office is the dumping ground for everything. Every magazine, piece of mail, what do we do with that, ends up in my office. The time has come to clean it up and throw everything out.

I have a bunch of stuff for nostalgic reasons. That part of my life is over. I am the only person who is nostalgic over the book that proved DOS batch file programming tips and tools. So much to throw away, to give away. All the magazines will end up in the hospitals somewhere for people to read or abscond away with. All the computer I kept for spare parts will be disposed of. You get the idea. It will be an empty room within a week or so.

Today is a full house day. Devin is coming home for the weekend. We have people visiting for lunch and after. My cousin Fafar who is on town for a conference will be joining us for supper, with her son Ryan. He is a chef of some kind. It will be interesting to see and Devin in the kitchen together. I have not seen years in years. It will be a good visit. I am very much looking forward to it.

You cannot have any more up to date news than this. The oxygen man just left. We now have a huge machine that dispenses oxygen as needed. It takes about 15 minutes to warm up, comes with a 50ft tube, one of those with two nozzles that fit in your nose and go over your ears so it does not come off. You see them in movies all the time. I also have two large tanks, and two small ones. The small ones fit in an over the shoulder carry case. The larger ones comes in a wheelie. All very weird.

Thanks for being there.

8 Responses to “Palliative Care”

  1. "I am the only person who is nostalgic over the book that proved DOS batch file programming tips and tools." NOT true! Oh, those were heady days back then! Bill Gates was just a nerd, and WE, Faroukh …. were yet young.

    My Dad did the O2 routine for quite some time. He amused Nancy, Doug, Leigh and I with his "booger" evacuation routines. (That nose "harness" seems to impede normal hankie usage patterns)? Quite the clown, our Dad! Something to think about, come next Halloween?
    On the camera challenge – try one of those cool consumer jobs with "point n' shoot" mode? Your work is WAY too good to be hung up on the complexities of your double lens! You have so many gifts and talents – I guess easing back on ONE of them might seem like a small thing?
    (Hey, you seem to be working the keyboard pretty well)!

    • I use a Nikon DSLR for most of my picture thee days. Specially for get togethers. The twin lens does not work for spontaneous pictures. Too much setup time and thought process.I cannot use poit and shoots. They have become very frustrating. Not sure why they insist on putting such a lag time between pressing the shutter release and the actual being taken.

  2. I feel grateful that you're willing and able to tell us your story.

  3. Sorry to hear the trip idea is squashed. You can't get away from us! I'll be joining the parade tomorrow. As always, thank you so much for continuing to share your news and thoughts.

  4. Pas une seule journée ne passe sans que je pense à vous. J'ai hâte d'aller voir mes amis à Toronto, d'ici les fêtes, je le souhaite vivement… Amitiés, et @ très bientôt.

  5. dear, dear farokh, what a story. you make everything seem an adventure

  6. I have read and re-read this post and have digested so that I now have only two things to say.

    First, the word with which you start this post, 'our', is such a warm and inclusive word. It suggests to the reader the truth of the matter–that although the cancer is in your body, there are so many more people involved in this story and this journey, because of their love for you and for your family. Thank you for letting us in.

    The second is about paragraph 10: you, behave well? I'll believe it when I see it!!

  7. Dear Farokh. You are a wonderful man and a wonderful storyteller. (Not the only one in the family!). Thank you, thank you for sharing your story. With much love,

    Brian

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