I started spending more and more time in bed. Wake up in the morning, have breakfast, maybe drive Janet to work. Shop for food a bit, then come home and collapse in bed. Sleep from ten in the morning to around two in the afternoon. I thought at times I was not eating enough, or drinking enough water. Increased both those. Got hit by bouts of nausea. Took pills for that.

Fetneh kept insisting I go for acupuncture to increase my energy levels. I kept promising to go, then forget the promise made. Almost as if I did not have the energy to go for the one thing that might just increase my energy.

No one was very happy about this. Janet had to almost accept reality. She could not do anything about it. Kept encouraging them to get on with things. Make a plan, everyone said. Set up a routine and do it. It does not have to be complicated. Just start doing things. I am doing things, I am sleeping. You can bet that put a smile on their faces.

I took my daily sleep last Friday. I had the shivers while lying under the winter comforter. We are in fall mode, nowhere near winter. I should not be cold. I closed all the windows. Still had the shivers. They kept waking me up. I finally roused myself around three in the afternoon. I was hungry. A man has to have his priorities. I was also in pain.

Oh yeah the pain. I have started having these pains along the bottom of my rib cage. It turns out they are due to an inflamed liver. Could be a good thing or not depending on whether the tumours are getting bigger (bad) or smaller (good!). Tylenol 1s take care of the pain rather nicely thank you very much. I pop a couple of those, get dressed and make my way tot he kitchen. I am still shivering.

I am out of breath by the time I get down there. I may have neglected that part of the narrative. I have running out breath a lot as well. Say a couple of words and take a few breaths. It comes and goes. There does not appear to be rhyme or reason for the effects.

I get myself something to eat and am still shivering. I am so dense these days. It suddenly occurs to me that I may have a temperature. I go back upstairs to get the thermometer. We have one of those units that you stick in the ear. It responds in seconds. I register 38.5C. I am supposed to go to hospital hen I hit 38. I decide this is an anomaly. The T1s will take care of it anyways. My temperature goes down as the day progresses, hitting almost 37, An anomaly it may have been.

Janet is in New York on business and to see Devin. She left n Thursday morning. She has arranged, or the friends arranged to come look after me. Diana is coming to feed me on Friday night, and Nancy is doing the honours on Saturday. I have been cooking up a storm of late and find this very amusing. Given my level of fatigue, breathlessness, and fever, the rescue is very welcome.

Diana, Andrew and Leona being dinner over. I love teasing her kids. They are extremely bright and rise to the occasion brilliantly, not shy to defend themselves under my relentless attacks. Diana does not have to step in to defend them. They do an admirable job. They also take the teasing in the spirit it is intended in. We have a good time. Andrew wants advice on what sort of computer to by. He wants something zippy, fast, a computer that will almost read his thoughts. Come on instantly. Oh Andrew, good luck with that. Speed is so relative to your experiences.

I am obviously done for, and they take their leave. Leslie has come home to keep me company. I feel bad, because I am headed straight to bed. She is not to be deterred from her objective and insists on staying home.

Saturday morning sees me with a temperature of 37.8. Sigh of relief. A couple of T1s will, and do take care of that. I go to the market but do have the energy to walk around. I come home, and go to bed. This is getting ridiculous. Wake up a lot later and start doing stuff. Pain, breathless, getting really frustrated. I have a telephone conversation with Janet. She is having a fine time. Devin is doing well, having a good time at The New School.

Nancy calls to confer about dinner. Pasta it is. I have cut down on my eating. Severely cut down to avoid stomach aches. She will cook it when she gets here. I take my temperature. Yikes, I am back at 38.5. Nancy will take me to hospital after dinner. Nothing worse than going to emergency on an empty stomach. They do not have decent food there. We eat, with Leslie coming home and joining us. She stays behind to clean up. Nancy and I drive to the hospital. She drives, I go along for the ride.

I bring all my pills with me. I have one Chemo pill that I have to take at 8AM and 8PM on Fridays and Saturdays. We arrive at the hospital at 8:00PM. Walk up to the triage nurse. She is a bit brusque. Are you here to see a doctor. I am a bit confused by the question. Not sure what my options are. Stammer something like, I guess, maybe, sure. She is getting impatient. Are you here to see doctor or a patient. Clarification. Oh a doctor for sure. I look at Nancy. I don’t look sick enough. She seems to think I am healthy.

I take a seat next tot he nurse and start answering her questions. She takes my vitals. My temperature has not budged. So I am sick. She is much calmer now and processes me. Nancy and I sit in the waiting room. We are barely settled when I get called in to register. I am also told it is safe to take my pills. I take the pills, register, get my wrist band to make sure everyone knows I am a genuine sick person. We settle again in the waiting room. There are maybe half a dozen people ahead of us. Not bad for a major downtown hospital on a Saturday night. Should not be that long of a wait. We are called in almost immediately. Nancy is impressed. I make sure she comes in with me. Nothing she has not seen or talked about.

We are ushered into a private room just beside the nurses station. I like hearing the action and conversations. There is nothing worse than being secluded while in emergency, you feel as if they have forgotten about you. They come and do blood work, request some urine. Nothing unusual. They are prompt and friendly and young, so young, and very pretty. As Judy said, I am not that sick. Dr. Quinn comes in to talk to us. They will do a CT-Scan of the lungs, ultrasound of the heart to make sure there is no water around it, more blood work. The original blood work has come in negative indicating there are no infections. They took blood from my Port-a-Cath. They want to take some more from my veins to make sure the Port-a-Cath is not infected.

Nurse comes in with two very large vials to get more blood from me. They assure me I have enough. She pokes me and takes her samples. They will be used to grow cultures in the lab to make sure I am truly free from infections. There are a lot of people with colds around us. The doctor comes back. The CT-Scan machine is not working. They will take a chest X-Ray instead, looking for signs of pneumonia or other items obstructing the lungs. They still want to do the Scan which will find things that the X-Ray machine cannot see, such as small blood clots that may have made their way into the lung. They do not think there are any since I am taking a blood thinner, but I am a critical case and they are not willing to take any chances.

Everything happens pretty quickly. By midnight, they have decided I should stay in the hospital for observations. The X-Rays show a number of metastasized cancer cells in both lungs. From what the doctor says, I am guessing more than before. I thinks her words were there are a lot of mets in your lungs. Nothing else though which is both good and bad. Good which means I am free from infections, bad because they have to keep me to do a Scan during the day.

Another doctor, Dr. Kimberly Bremmer comes to visit. Internal medicine. She will look after me during my hospital stay. The general consensus appears to be that the Scan will also reveal nothing. They feel that all the symptoms I am showing are a result of the cancer getting worse. The information leaves me a bit numb. Nancy and I hold hands.

I am in a room by 2:00AM. A semi-private room was all that was available, and no room mate. Time are tough. Leigh and Sascha are out on the town and decide to join me. Am I able to take visitors at that time of night. Sure says the nurse. They get there by 2:30 and spend an hour with me. I have to kick them out. This is just slightly past my bed time of 9:00PM.

Dr. Bremmer visits me in the morning. She is with a retinue of interns and a more senior Doctor. They are all very serious. VERY SERIOUS. No smiles from anyone, except Dr. Bremmer. They go over my situation.  Sunday will be a day of rest and observation. The Scan will take place on Monday. Cannot see the future beyond that.

Nancy and I spent the night texting with Janet, Leslie, Fetneh, and Judith. It was almost comical. Hospitals have given up trying to stop us from using our cell phones. Sunday morning saw more of the same, adding emails to the mix as everyone was kept in the loop about what is going on. My fingers were getting sore. Nancy came back to keep me company and also to bring me my phone charger. Janet was on her way back from New York and would be at the hospital around 2PM. Nancy had to leave by lunch time to take Lilly (her daughter) to her riding lessons.

David Jang dropped in to keep me company. Janet finally showed up, as did Diana, and Leslie of course. The traffic of eMails and texting finally came to a halt. It seemed so quiet all of a sudden. I sent Janet and Leslie home around 7. Janet is not feeling well and could use the rest. I was going to sleep anyways. David left around 6. None of us wanted to discuss the worse case scenario.

I had to stay awake till 9:PM. The nurses had to come around and make note of our vital signs.  No temperature, pressure OK. No surprises. My nurse is very charming and we have a long chat about things in general. She leaves, I close the door and try to sleep. Did not have to try very hard. The bed is very uncomfortable, but it matters little as I drift in and out of sleep.

Mount Sinai hospital where I was, is attached to the Princess Margaret Hospital. They all have access to patient files at each other’s establishments. The doctors at emergency and at the hospital were fully up to date with my condition. I was very impressed with their service, professionalism, and general conduct. I was disappointed by their food. Hospitals can surely do better. We are all told about the dangers of proceed foods, and yet are being fed stuff like Rice Krispies and 1% milk as part of a healthy diet. There is something seriously amiss here.

The Scan takes place on Monday morning. The results are in by 2PM. As I keep telling people, I would be a healthy person if it wasn’t for that small matter of having cancer. I am free of infection, blood is clean, lungs are clean, heart is healthy, all organs are functioning properly. Except for the mets. that are having a jolly party.

The title of this entry is Not Enough Words. We are all a bit numb at the news and are not sure what to make of it all. Do I have still have two years in me? More? Less? Janet and I have decided it is time to make some plans. Decide what we want to do and do it.

My father died in a rather ferocious car accident in 1999. The doctors at the hospital reassured us by saying that he did not suffer, that the brain shuts down in the face of huge adversity. So it is with us. There are no thoughts going through my head. The brain shuts down. Every once in a while you wake up and go, oh yeah, I have to think about this, and the brain shuts down again.

There are not enough words to describe what we are going through. Me, my family, my amazing friends who have rallied around me seemingly oblivious to my obvious shortcomings.

I went in for my Neulasta shot on Monday, about which I have already written copiously. Neulasta appears to have a debilitating effect before its benefits kick in. I spent most of the week in bed, often in tears for no apparent reason. Slept through a lot of it. Had a moderate temperature all week, hovering between normal (36.5C) and 37.4C. Nothing major. The chemo instructions are to NOT take anything for a temperature. Since we cannot tell for sure that the temperature is due to Neulasta, I spent the week with the temperature and no relief.

The first time I took this drug, I spent 30 hours suffering from lower back spasms. I waited for them all week. There were small signs of them almost every day, but they passed quickly. As in one spasm then it was over. Things changed on Saturday night. Judy and Arlin brought some pizza over from the Magic Oven, one of the best and most expensive pizza houses in town. I spent most of Saturday in bed trying to regain my strength. I was not too successful. Around 9PM, my ribs around my liver started to hurt much as my lower back the previous month.

I went back to bed, took two Tylenol1s (T1s), rolled over on my left side and assumed the fetus position. This was the only position that provided some relief. I tried them all. I cried and cried. Devin came up to console me, and still I cried. It was very hard. I started to feel a bit better when the drugs finally decided to perform their designated task.  I barely slept the whole night. Woke up on the hour, took T1s every four or five hours. I have been pain free, since about 11AM when I took my last dose. This could be a good sign.

I shoveled the meager amount of snow we have had on Friday morning. More of a swept the snow away than actual shoveling. Cleaned the snow off the car, so Janet would not have to. She went to work, I went back to bed. Could not believe how exhausting shoveling a couple of inches of fluffy snow was. Slept trough to 12:30, and woke up only because I was very hungry. Warmed up some rice, then the phone started ringing. It was very bizarre. It had not rung the entire morning, but started doing so once I was awake.

Sharon Singer came over for a chat and a look see. I was in great shape. We had a wonderful time to be repeated soon, I hope. One of those rambling discussion I tend to have with a few of my friends.

Back to bed by 8PM. What a life.

The coming week has a few activities in it. I am seeing Dr. Kennedy, my surgeon on Monday, followed by Brain Fog on Tuesday, and Q-Gong on Wednesday.

That should keep me out of trouble.

My back had started hurting in the afternoon. This is listed as a possible side effect of getting Neulasta. The pain was not so bad. I went to bed around 9, and the pain was getting worse. I took a couple of Tylenol 1s, just so I could get to sleep. Woke up every four hours to take more Tylenols. The process lasted about 30 hours. This was the most painful back pains and the strangest experience I have gone through.

At the risk of offending some of you, it felt like someone had put firecrackers up my ass. Once lit, my hips would start this uncontrollable surge rising off the chair in spasms. Janet could not stop laughing when she saw it happen. It takes about an hour for the Tylenols to kick in. In the meantime, the lower back pain had started to spread up toward the middle back. This was a bone pain as opposed to a muscle pain. Heating pads did not work. But the Tylenols did.

I woke up on Sunday morning at 4Am, about an hour late for my Tylenols. No pain. I got up and went downstairs, ate something and just reveled in a pain free life. Janet and I discussed this a bit further in the morning and wondered whether this was the Neulasta finally kicking in. I spent Sunday full of energy but tired from teh previous day. Monday confirmed that the Neulasta was finally working. Only took a week.

I spent Monday and Tuesday just doing things. I had energy. I went shopping. I did not nap in the afternoons, except for about 30 minutes around 5PM. Lasted longer in the evenings. Good times.

Wednesday started in such exciting fashion. Blood work followed by the last Art Therapy Session, which I have already covered. I went for Christmas lunch at David’s office. Did not last very long, but it was good to see everyone. Went home after for a well deserved rest.

Thursday was chemo day. I was a bit apprehensive hoping for an increased white blood cell count. I was confident that it had gone up based on my energy level. Sure enough, the count jumped from 0.9 to 8.4. We arrived at the Chemo Daycare at 8:30, and had to wait till 9:30 to be taken in. Left there all done around 12:20. I am handling the chemo a lot better than previous sessions. Next chemo is set for December 30.

In the meantime I have a tooth that has to be removed surgically. I am seeing the dental surgeon on Tuesday. They will have to decide whether the operation is possible or not, or whether there will be too much bleeding. Avastin makes bleeding a dangerous option.

Chemo tires you out. There is no other word for it. Stayed home all day Friday. Thinking of going out tomorrow afternoon.

Janet is off work till January. We might go to a matinee one day. Looking forward to that. And oh yes, we need a new vacuum cleaner. Our old one is now about 25 years old, hated and despised by all. I asked the salesman what makes a good vacuum cleaner. His answer was suction. So I bought this thing that has had amazing suction. But all good things come to an end.

Life is so exciting, no?

you come in a plastic bag
invading my heart
poisoning my body
weakening my spirit

racing through my body
wrecking ball that you are
stopping blood vessels from forming
killing cancer cells

yet here we are
eight days later
reeling from your invasion
exhausted from your tentacles

sleeping or awake
not feeling like much
going through the motions
dealing with your pain

avastin, avastin
what art thou

My brother and his wife left on Monday morning. My sister had come for the day on Sunday and left that same evening. I felt like I was on a natural high on Sunday. We even joked and laughed about my cancer. That was a a first and a very good sign. That people felt comfortable enough to laugh at this thing is way cool.

The last visit from my brother was followed by a huge emotional vacuum. This time was no different.  The high is followed by a very natural low. That was yesterday. The weakness of my voice is a dead giveaway.

Fo’ad drove me to the hospital for my CT-Scan. This is the first one since  the chemo treatments have started. The results should be telling. I am seeing the oncologist on Wednesday, so the wait is short for the results.

I had a pain in my ribcage last night right about where the liver is located. It went away by the morning and came back tonight with what appears to be a vengeance. I took a couple of Tylenol 1s. We will see if it helps. These things take about an hour to kick in.

My nurse Barb came for a visit this morning to see how I am doing. She will visit me every two weeks just to keep tabs on me. It was really nice seeing her. I somehow miss my nurses. You cannot help but want to get rid of them when they visit. Once they are gone, the story changes somewhat. It turns out the visits were nice and reassuring. Someone who looks at you and tells you how well you are doing and actually knows.

This has not been a good week so far. I went to see my supplier of bags and such, Faye. She is very sweet. We are looking at alternative brands. One of them has a locking bag. Makes sense considering my accident of the other night. We ordered samples. I went shopping for food after. Took some pictures.

Came home exhausted. It was not supposed to be this way. This is usually the first day of recovery where I show signs of strength, vim and vigor. Yet here I am totally exhausted and going to bed after I post this item. Not fair.

Tomorrow is a big day. I get to paint my picture of anger at the Art Therapy session. I already know what I am going to do. A no brainer when you have time to think. Just hope I can do my idea justice. You will see the results in the next couple of days.

And of course the oncologist.

Big day tomorrow

Devin and I drove Janet to work in the morning. We got to Wellspring about 30 minutes too early. We had a coffee and read the paper.

Art Therapy. I had no idea what to expect and decided to try really hard to keep an open mind. It was not difficult. Last time I had anything to do with painting or drawing was in boarding school in England. I had the dubious distinction of almost failing that class. I mean really, who “fails” at art class? There were too many other things going on in my life at the time, like surviving in an all-white school as the only coloured person. Minor issue.

The room was small with a large square boardroom table. The instructor was still setting things up after the 10AM start time. It really matters little. What else do we have to do? Places to be? The table was covered with a couple of pieces of rubber mats. The type that some people put on their dining room tables to protect the surface. I gather that it was the first time for everyone based on the reaction to the mat and the discussion regarding its fabric. This did not bode well. The mats were covered with dry paint from previous such classes. By the time the dust had settled, there were six women in the room and moi, the sole male. Perfect ratio.

About 35 years ago, in Montreal, I went out to dinner with a bunch of friends and my sister Fetneh. There were 8 of us, if I recall. The waiter kept giving me the hairy eyeball. I was starting to wonder if I knew the guy and had offended him somewhere. It suddenly occurred to me, as I looked around the table, that his look was more quizzical than hairy. He was wondering what a douche bag like me was doing with seven women. The harem, such as it was, consisted of my sister, my oldest friend Nahed Rushdy and a bunch of other platonically related people. Nahed and I grew up in Ethiopia. She pointed out to me the other day, that we have known each other since grade whatever in the 60′s. Just to say, I have been in this situation many times.

The assortment of people was varied. You have to understand that all the goings on at these sessions is strictly confidential. So you can’t just go and blab it out to everyone. You stand on notice. The lady sitting beside me also has colon cancer. Her surgery is done and she is mending. She was very sweet and gentle in her manners. She does not need chemo therapy, lucky her. We will talk more next week. I have to digress again.

I used to be a computer trainer.  I noticed at a particular point that people tend to sit in the same seats when they come back for more training. Does not matter if the training is at their location or ours. The person would come back for their second training day, be it a day, week, or month later, and make a bee-line for the seat they had occupied the last time they were there. They were also quite put out and almost disoriented if someone had beaten them to their seat. It is a very peculiar behaviour. Not sure what it means, or how you would go about studying it.

I am sure that we will all sit in the same seats next week. I might even go in a bit late to test this. The instructor set up the room. Lots of paper, bowls of paint of all the primary colours and a couple more, pails of crayons and chalk, markers of all colours. Once settled, we were given our instructions.

We are going to paint, and discuss our paintings with everyone else. No judgments, All positive. No matter that you cannot paint. Let the child within you rear its tempestuous head and take over. Relax. Cry. Put your hands in the paint if you want the tactile feel. Everything is confidential. No recriminations. We are all in the same boat. Cool.

Our first assignment: paint your name. Not necessarily literally, though that is what we all did, but what you feel your name represents. Are you happy with your name? Do you love or hate it? Does it evoke joy? Whatever. The lady next to me folded her sheet in half. These are large sheet measuring 24 by 18 inches. She was being practical since there was little room. I followed suit. I was also being practical. How could I possibly fill up that amount of space?

Some of us sat there looking pensive, trying to not look concerned over the fact that we really did not understand how you could paint your name. Most went ahead and wrote their names down in BIG letters and started to colour them in, adding more and more detail. I decided to draw my name in Persian, just to be a bit different. I can neither read nor write the Farsi language, but I can write my name. It is a complicated language, beautiful, lyrical, but complicated. I painted some grass at the bottom of the page, a tree on the right, and a giant sun above and to the left. My name was front and centre. The sun is shining on me. So many interpretations!

People revealed a bit of themselves in the paintings, which made for a very interesting session. One person drew a heart in which she drew the faces of her family. She cried when she told us what that was about, specially when she said she wants to live. Very poignant. Others added some elements of what they like to do around their names. Statements of fashion design, traveling (planes), and water. Lots of water all around. Seems water has a very calming effect on people.

One person had splotches of purple, and brown and various other colours all over the paper. It was all covered and looked a bit peculiar. Turns out it was her garden of lilac trees. Made perfect sense. You could see the garden come to life in all the splotches and stains covering the wrinkling paper.

Another drew a house with a path leading up to it. Her name was written inside in all its blazing glory.  She craved the safety of the roof over her head. She said she had no idea why she drew what she did, just came to her.

There was a fair bit of chatter, but nothing of any consequence. Strangely no one asked for an explanation of my choice of language. Devin thinks I should take up calligraphy. So I went out and bout some pens, paper and a book to see where it takes me.

The next assignment was to paint our safe place. This smacked a of of the meadow exercise in the relaxations and visualization session. Devin said I should have painted a swarm of mosquitoes. Not very safe. This one took a while. I have never really thought of a safe place. My bed? That is where I go when I am tired, or need to get away from everyone. But I would hardly call it a safe place. Specially when one of the cats decides that any time is good to lie on my stomach. What or where is a safe place? This one took a while. I watched as the others threw themselves into the project with great gusto. The person to my left, of the roof over her head fame, was also deep in thought. Another participant had closed her eyes and deep in thought. It turns out she was doing a deep breathing exercise and centering herself. Interesting concept.

So I sat there. The person to my left requested pencils to draw with. And so we sat, contemplating the safe place conundrum. My colon cancer partner had found a safe place of sorts. She watching the birds swooping in to their nests in the building across the driveway. They felt safe. She felt she had found something. I finally found mine.

Ramone Alones

The text which you can barely read says:
Nothing like a great Cuban cigar on a warm evening surrounded by friends and family enjoying the times, dinner, conversation.

My painting generated far more conversation than I expected. They wanted to know about cigars, do you inhale? What makes a cigar good? How much does a cigar cost? Do women smoke? The caption under the title: Ramon Alones reads: The ultimate Cuban cigar. 45 minutes of bliss. 45 minutes? Are you kidding me. Hence the safe place. Sit, smoke, enjoy the company and the moment.

One person drew a church, and her house, her garden, and family. Another her time at a cottage that she found peaceful under the radiant sun surrounded by water. Another drew reference to her cottage that always brings solace and peace. My colon cancer partner gave up on drawing the building across the way. Her drawing was the most moving for me. Her thinking evolved into drawing a bunch of rectangular boxes in a bit of a pelle mele from the top of the page to the bottom. Somewhere in the middle of the page, two of the boxes leaned against one another. She drew herself in the triangle that was created by the joining of the boxes. There was great emphasis on the person. She surrounded herself with more protection, dark lines that enclosed her in the space. She equated her safe place with somewhere to feel comfortable and warm, a place to make peace with yourself. I will have to spend a bit more time with her. She is proving vulnerable and terribly interesting.

This is a long post. There is more.

These paintings generated a lot of conversation. Not sure how much of it was intended or not. The instructor was content to let people speak their mind and comment. He was quiet through most of the banter. There was a great deal of respect amongst the participants. No recriminations or judgments. All talked and participated. I took a lot of notes.

How do you define a safe place? Is it internal or external? Mention was made of the people who get caught in disasters losing their homes and belongings. How distraught they are. Have they lost their safe place? Should they consider the material belongings as safe? Is it not better to internalize the safe place? That way you have with you always, taking it with you through good times and bad. Radiating from the inside out.

How do you deal with the well meaning people who surround you with the best of intentions? You keep having to explain yourself and what you are going through. People just don’t get it. They ask the same questions, over and over again. We are dealing with the pain, both physical and emotional, why don’t people understand? We are trying to remain optimistic as we travel this long journey, trying to forge a new identity, a new reason for being. Why don’t people understand? Relatives and friends, all well meaning who criticize you for having a messy house instead of pitching in to help. Why don’t they understand? Should we expect them to understand?

What expectations should we have of others? How do we get support mechanisms in place that would ease the pain? What role does religion play? Is it a panacea? Or a placebo? Giving you false hope and expectations? How does God talk to us?

We talked about making a connection with life, with the earth, digging your hands in the garden and feeling the soil.

Water was in three or four of the drawings and paintings bringing peace and tranquility to people’s souls. Water, vast, in constant motion, calming, at peace with itself.

A couple of people cried, albeit briefly, stifling back the tears and immediately apologising for it. Everyone was quick to offer them tissues. Why apologise? Of all places, this is the one where no apology is required. Don’t they know that we all cry? All the time? We apologise for all sorts of things.

I had a surprisingly good time at this session. It lasted over 2 hours. The instructor had a difficult time bringing it to an end. The group was not willing to let things go. I am looking forward to next Wednesday. Look forward to your comments.

I woke up at 11:30 and was contemplating getting out of bed. It turned out to be 1:30 when I finally rolled out and into the shower. Picked up Janet at 2:30 and went to see Dr. Kennedy. The waiting room was unusually full. One doctor appeared to be running a production line. He was whizzing through his patients.

One patient sat across the room and was coughing and sniffling all the time. No mask. I finally went to the nurses desk and brought this to their attention. They started discussing amongst themselves trying to determine whose patient she was. But nothing was done about it. We have a ways to go in enforcing the rules that we post so freely.

David Woodley, Dr. Kennedy’s assistant came to get us. He has a very firm hand shake. A handshake. We are supposed to avoid those as well. This will all take a while.

Dr. Kennedy called a nurse in to remove all the tapes from my stomach. The main problem has so far been the sutures that did not hold. Dr. Kennedy says it has granulated and needs to be burned off. Out comes the sticks. They are 6 inch Flexible Caustic Applicators with 75% Silver Nitrate ans 25% Potassium Nitrate on its tip. The sticks are kept in a dark pouch. They lose their torture rating if exposed to air.

The tip of the stick is rubbed against the granulated skin on your wound. The skin is granulated which appears to be skin that has formed but has no idea what to do next. It is burned off to allow new skin with half a brain to form and take over. The burning process is repeated every three days until it is totally healed. Dr. Kennedy says it is pretty much healed at this point, just needs a bit of encouragement to close up completely.

My super wound nurse, Annemarie had done this to me once with interesting results. Lots of pain rolling across the stomach. Annemarie says she has not seen my reactions before. Imagine that, me, with a unique reaction to a treatment. The burning hurts again. You might well imagine that burning any part of your skin, healed or otherwise, hurts. Nothing two Tylenol 1′s will not mask.

We also have a discussion about the alien forms in my stomach. Dr Kennedy smiles. She is slowly getting accustomed to my sense of humour. The insides will eventually settle into the right position. May take six months or a year, but eventually, all will settle down and the lumps and growths will disappear.

Is is strange how adaptable we are. The first sight of the alien stomach horrified me. It is is now not even a minor point. Not that I am anxious to share the look with others, but it is not an issue to dwell over. The more important elements of my condition happen every couple of weeks when I get the chemo treatment. It is all relative to whatever could be happening that would be worse.

All is good. Though no Avastin yet. There is no rush for that anyways. It can always be added at a later time when the body has healed a bit more. Avastin may have a negative effect on the sutures that were done inside the body, the ones we cannot see. No rush.

We go home in good spirits.

Leslie is not feeling well. She keeps wearing a mask around the house and is considering moving out until she gets better. I have very mixed feelings about this. I understand why she wants to move out, but it is very nice to have her around. I wish we can make some changes to our house that would accommodate her lifestyle.

I take a nausea pill after supper. This is what things have come down to. Feel bad, take a pill. As Fetneh said to me the other day, what a twist. A person who has never taken so much as a vitamin C now has an apothecary in his bedroom.

A bad night’s sleep. Took the Lorazepam, eyelids weigh down, Word Searches taking longer. Yep time to sleep. Lasted an hour. Woke up, leg jumping, posted to this blog, if only to make Sharon happy, tried to sleep again. Went downstairs, had a snack, took the other half of the L, back to sleep. Awake an hour later, back downstairs for another snack, finally fall asleep at around 4AM.

The thing about these hours, is that it throws your sense of time off. We vacationed in the Yukon one summer. Light 24 hours. There was a dusk and dawn which lasted about an hour collectively. We were having a bar-b-que one night when a neighbour came over and asked what we were up to. Seemed obvious, but his question had to do more with do you have any what time it is? It was midnight and we were just sitting down to dinner.

I am sleeping strange hours. Woke up this morning and thought it was early, except for the fact that it was 11:30AM. Late start to the day which is something I have to get accustomed to. It sort of changes the order of operations. Nothing wrong with that, just have to get accustomed to it.

Kali is thinking of coming over this afternoon. I think we will go for a walk. I need to shower before she gets here.

We have no idea how this works. The baby bottle contains a soft plastic bottle that contains the chemo. We looked at the bottle on Friday to see if it was working, and could not tell. The soft plastic container was still full. Turns out that the soft plastic container shrinks as it empties. The baby bottle has graduated lines on it as a guide the shrinking of the soft container. By Saturday morning, the thing was pretty empty.

We kept looking out for signs of anything. Nausea, exhaustion, dehydration, anything that would reflect something negative going on. But all was fine, except I am very tired. Part of it is the lack of sleep, but a lot of it is the chemo gradually working its magic.

Nurse calls on Saturday, around noon. She will be here in 15 minutes to disconnect. I forget to ask her name and she does not volunteer one. They all call and identify themselves as nurse, nothing else. Once they know you, its a bit different. So I assumed this was a new nurse.

Door bell rings, and it is Natalie, my very first nurse. How delightful! She is very encouraging. She wanted to surprise me, and elected to not identify herself. There will have to be a price paid for that. She remarks on the huge progress I have made, which means a lot since she was the first one of the nurses to see me and has not seen me since.

The disconnection ritual is almost as elaborate as the connection. Out comes the envelope that contains the gloves. Out come all the syringes containing God knows what that will be used to flush out my system. Then the gloves go on and the ritual starts. Bottle is disconnected and discarded in a container that has been provided for this purpose. The syringes are applied next including the blood thinner. Finally, the porta-cath is disconnected, very quickly. No pain there. The needle looks like a giant, very thin, very sharp thumb tack. Everything goes into the disposal container.

What a relief!

Natalie also looks after my wounds. She is so sweet. We have a lovely conversation and she leaves. On to her next conquest.

I am exhausted, but still no sleep. This is getting tedious. I take a full Gravol in the evening and wait for the drowsiness to set in. No luck. I am wide awake and remain so for most of the night. I get a total of 4 hours of sleep and wake up on Sunday morning in a very irritated mood.

Sunday is Thanksgiving and dinner promises to be amazing. Judy is bringing the Mennonite pasture raised turkey. Janet is providing the vegetables which she and Leslie have been cooking since Friday at a very leisurely pace.

Janet and I go shopping. We are looking for a chest of drawers of some sort to hold all the medication, syringes, and colostomy supplies. They are all sitting in boxes on the floor in the bedroom. A bit of a mess. we don’t find anything, but one store they will make something for us on spec. I will draw it out and measure it and see what happens.

I try to sleep in the afternoon so I can participate in the festivities. My stomach is playing an number. Lots of gas and discharge. I can feel the stuff rolling inside me finding its way out. This is not comfortable. Sleep eludes me though I am, again, constantly, unavoidably tired.

We celebrate Thanksgiving on Sunday evening. My sister, Fetneh calls in the morning and we have a long chat. I tell her about the planned dinner and she wants to know why she is not invited.  Hop on a plane, I say, simple. The bed is made, and you know your way around.

She does. What an amazing surprise to have her join us even if it is for a day. I am thrilled.

Dinner was amazing. We have pictures, They will be posted as soon as I get around to the recipe page. I ate like a king but did not overdo it. Very worried about my stomach. Took a nausea pill just to be on the safe side.

Went to bed at 9. Fell asleep only to wake up an hour later. Did a Word Search page and went back to sleep. Woke up at 4:30. Feeling much better this morning