Update - November 26, 2010

blood count, doctor visits, oxygen tank, pain killers, steroids 1 Response »
Nov 262010

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.

Posted by Farokh at 06:38 Tagged with: , ,

Palliative Care

doctor visits, oxygen tank, pain klillers, palliative 8 Responses »
Nov 052010

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.

Posted by Farokh at 12:41 Tagged with: , ,
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