I have not written an update in a while. I am stuck between the three thoughts at the moment, the third is the most personal and complicated of the three. Not sure when that will emerge from the dark recesses of my feeble brain.. The first has to do with the legacy we leave behind. That should be out next week sometime. I have also been asked to give some thought to the concept of the Mysteries of Healing. Janet tells me I am not doing a very good job of that and should maybe talk about the Mysteries of Coping.

I have also not provided you with an update of my situation. Things are moving at a rapid rate. Not the death rattle, just changes in the body and the mind. When discussing matters with doctors, I have to be careful to note that what we are talking about is taking place over the matter of days. No pain means since last time we spoke, nothing longer.

Our meeting with the angelic Dr. Hedley has now been well documented and read. My care has been moved to Palliative at the Princess Margaret Hospital. The best part of palliative is that they are totally focused on quality of life. Nothing else really matters at this point. Eat what you what, drink what you want, do not, under any circumstances be in pain.

Pain is not good for you at any time. The doctors, from the very beginning have made it very clear that pain is not something to be bourne. It has to be controlled. We have a tendency to think we should be manly and bear the pain. Good for the soul, builds character, makes a man out of you. Chin up, pull up your socks. What every single doctor and nurse tells you is the opposite. Get rid of your pain immediately. The body cannot and will not heal as long as it dealing with the pain. It cannot. Killing the pain might mask the symptoms. Mask away. The body needs time to heal. Get rd of the pain short term, heal, get off the pills.

Palliative is big on pain relief. Most of my conversations with everyone begins with are you in pain? The answer is really I have no idea. I have pain killers that are taking care of that for me, thank you very much. When in pain, take more pills. Most of my pain comes in the middle of the night when the liver decides to wake me up. I take a 2mg dose of a morphine derivative called Dilauded, and one Extra Strength Tylenol. Relief comes within thirty minutes. Unless I have a lot of thoughts churning, I am usually asleep asleep soon after the thirty minutes. Other nights are like this one, were I get up and do something.

I take a 3mg dose of Dilauded twice a day. Along with some steroid and a stomach calmer so the drugs do not damage my stomach lining. That seems to do the trick most days. Hardly a heavy dose of anything. Everyone seems a bit surprised I do not need more pain killers. I also take a couple of table spoons of Luctalose, an over the counter drano for the body. I take those three times a day. All of this is directed to my liver. The Luctalose helps the drain with its cleaning duties flushing things out. Appears to work. No constipation that I know of.

The liver is an interesting organ. More so at this point of my life. It is charged with keeping the system clean. It seems to be performing that right now to an amazing degree. It inflames, specially if I get upset over anything. That effect has been well documented, both in the world of science, and by my now fragile body. Lying on my left side is the worst, since the liver flops over and puts pressure on everything. Right is better. Back is the best, but there are only so many hours I can spend on my back. Really boring after a while. I groan when I roll around, which is not good. Keeps waking up Janet. I can hear her breathing stop as she attempts to take notes of the level of groans, waiting for them to stop. I cannot control them.

We went to see the doctor last week. They are concerned about the inflammation of my legs. Water retention, something called edema. My legs are swollen from the toes all the way up. We got tensor socks today that go all the way up. Janet has to help me put them on. I cannot bend over that far, and cannot get back up if I do. I am losing more and more control over things. Emotionally debilitating. This too shall pass. We have managed to handle everything else so far. You need rubber gloves to get the socks on over all the swelling. They helped instantly. I was amazed by the reaction of both legs to them. Put them on first thing in the morning, take them off last.  Janet then applies a generous dose of Aveno body cream to the legs and arms. Let the cream dry a bit, and off to sleep.

I had a nose bleed a could of nights ago. I went from asleep to fast awake in seconds. Just felt a dribble coming out of my nostril I have become so sensitive to the signals the body is sending. The bleeding lasted about twenty minutes, then stopped as abruptly as it had started. Every day is a surprise.

I started telling about the visit to the doctor. Their concern led them to giving me an ultra sound of the legs to make sure there are no blood clots. Cancer patients are susceptible to them at the best of times, needing no further encouragement from edema. I have no clots.

They then did a blood test. My numbers are as good as that of any healthy person. My liver enzymes that indicate cancer tumor activity showed a 20% increase. Sounds bad, except that the numbers had tripled between September and the end of October. Now, a mere 20% growth. All good news. I was furious. I can feel the body failing in some respects. My strength is way down. I am watching my muscles disappear. I have stopped driving because I do not trust my reflexes any more. I am not sure I can lift my leg to hit the brakes. The blood results are making a mockery out of everything.

Then the nose bleed.

We have transitioned the palliative care to the home care nurses. That is the way the system works. Less expensive for them to come to me. The home care doctor came to see us last Monday. We went through the history. talked about everything that was annoying us. They cannot help us any more than we are doing. We are in fine shape and should just continue. That is just the way of the new world.

The solution to the edema is interesting. The issue is that the water gets to the legs but cannot travel back out. This is the normal process for all you healthy people out there. It gets stuck in the legs. My stomach is experiencing water retention as well. The solution to the legs is to drain the stomach. The water travels back filling up the stomach which is drained again, and again, and again. A two week process. Are you kidding me??? Leave things as they are. We will stick to the socks for now.

The doctor prescribed another pill to take once a day. A diuretic. One of the side effects may be drowsiness, and maybe a lowering of my blood pressure which has been perfect through this whole adventure.  I took my first one yesterday morning and passed out for three hours. We were planning on going to the One of a Kind Show, renting an electric scooter of some kind. We had to cancel. I was livid. Cannot even have one sane day.

I am on oxygen. A machine in my office provides all the oxygen I could possibly need. Use it mostly when I have visitors. Lose my breath when I talk, some might add talk too much. A factory of air supplying me with energy. Oxygen has no smell or taste. Hard to know whether it is working or not, though I must say, it seems to work in the short term allowing me to participate in a conversation. I have an additional set of tanks, one of which is small and I can take with me.  I was going to take one with me to the show. I have had a lot of problems adjusting to the tanks. They seem to carry a signal of doom around them. This is passing slowly. Taking the tank with me on every excursion helps dissipate whatever anxiety I may over it.

Life throws a curve, we counter with a base hit, a fly ball, eventually a home run. Most things appear to lose their importance after a while. I still have a pulse and get to enjoy the company of friends and relatives. What I do miss though is doing the absurdly mundane and boring things we so take for granted. Going out to look at bathroom sinks and toilet. Shoot me now.

The show runs next week as well. We are keeping Tuesday clear for that.

The house has been full of people for the past month or so, to the point where we are all looking at each other askance. Contrary to my Visits post, we have started curtailing the visits controlling the times a bit better, giving us all a bit of a breather. This has been a quiet week. Saturday will be very busy and promises to be a fun day. Lisa is coming over to watch a couple of episodes of Dr Who with me. Shawn is also joining us.She make some popcorn and away we go into the adventures of a time lord. What could possibly be more fun.

I have a nurse coming over tomorrow to take some blood for testing and check me out. The result of crashing yesterday morning and the nose bleed. They are concerned about the platelet counts dropping to low. The solution to that is a transfusion. The crashing could be due to the blood pressure dropping. Either way, I am off the diuretic for now. I suggested to them that I could take the diuretic at 5 in the morning. Its negative effects will be over by 9. Nurse coming at 10, should be perfect. They did not bite. The diuretic has the desired effect of making me pee a lot. That is supposed to help with draining the water from my legs. For some reason, they would not put a tap in my toes.

I think I have rambled enough for one night. Will write more as situations develop.

This blog has been very helpful helping me clear my thoughts, allowing me to better handle all the curves. I thank for taking the time to read, and specially to comment.

One Response to “Update – November 26, 2010”

  1. "To laugh often and much; to win the respect of intelligent people and the affection of children…to leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded" – Ralph Waldo Emerson. Just something to add to the musings on your legacy that you've promised us blog-readers!

    What stood out for me in this post was how your relationship with your body has changed. You have become so attuned to your physical self. How bizarre that this should come just as your time in your physical body. That this sensitivity to what your body is saying to you (more rest, more oxygen, liver's flopping around)

    It makes me think about how we all treat our bodies, about how (and I can speak only generally from a Western cultural background) we fill them with junk, run them into the ground, ignore them, expect them to keep up with our lifestyle, moan when they need recharging, shove feet into stilettos which causes calves to contract and spines to misalign, expect them to function optimally with minimal upkeep, and are surprized when we catch cold, refuse to exercise them, don't screen them from the sun, and seem so generally divorced from their wellbeing and from any sense of connection to them.

    Even when I hear my friends and others speak about doing things that are good for the body (exercising, eating well), rarely does it come from a place of looking after or caring for our bodies, and often does it come from trying to force our bodies to conform to some image that we wish them to, whether that be skinny, muscly, longer-working, slower-tiring, etc etc.

    Have we lost our connection to our bodies? Did we ever have it in the first place? Do we spend so much time living up in our heads that we are unaware of the signals that our bodies our sending us or, even if we feel them, do we dismiss them as less important than completing tasks set by our rational selves, and by doing so de-prioitize looking after our bodies?

    What a time, Farokh, to be attuned to your body. To be aware of your liver! How many of us reading your blog can say that we are aware of any our more hidden internal organs? Sure, we notice our stomach when it grumbles, and some of us might once in a while check in with our lungs, but on a day to day basis (unless exercising or experiencing fear or anxiety) how many of us are even aware of the steady beat of our hearts or how it feels to draw breath into our bellies?

    It is time for me to stop rambling. Thank you for sharing and, for me at least, sparking off an exploration of how we relate to our bodies and what my body is trying to say to me (now if I could just get my lumbar spine to pipe down so I could hear the rest of my body… :) )

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