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.

We are slowly realizing that a lot of decisions are ours to make. If we want to quit the Chemo Session, than quit it is. We are in charge of our treatments. The doctors are there to guide and advise us. The ultimate decision is ours. This is a bit freaky. We are never sure if we are making the right decisions or not. Do we have the right amount of information to make a decision? Is it the right decision? To make matters worse, the doctors themselves are not sure either.

Every body reacts differently to the drugs. We were at a small party celebrating Kali’s birthday the other day. One of the friends has a brother with very advanced lung cancer. The gave him one Chemo session to which he reacted very badly. All the stuff they keep expecting me to go through. So sorry to disappoint. They removed his brother from any further Chemo treatments. So are you still on Chemo, he asks me. Yes. How long have you been on Chemo. Almost a year now, since last October. He was dumbfounded. I do not look or behave like a Chemo patient. Except for the afternoon naps. We are all different.

My blood work showed more positive results than last time. My liver enzymes are closer to where they should be with one indicative being totally in the normal range.

Dr. Hedley brought up the fact that we have not had a break since this thing started. I started feeling the pains in June 2009. By August 1, the diagnosis was fairly complete and certain. Operation on September 2, Chemo in October. Yikes. A year without a break. The doctor saw no reason why we should not stop the treatments right now and take our vacation. A CT-Scan was planned for Friday (today) to set a baseline for the future. Next CT-Scan in two months. Chemo would only start again if my situation deteriorates. A steady condition will result in a longer vacation.

A two month Chemo Vacation is on the books. Cannot believe it. I am in a bit of a daze. Basically what happens when you receive bad news or terrifically good news. You cannot believe your ears and shut down. Two months with no Chemo.

Janet and I stared at each other. What do you say? How do you react?

Doctor Hedley wanted to feel my stomach to make sure all was right. I suggested that things were still a bit tender. I can lift heavier bags now, but feel some discomfort if I overdo things. I am sure the healing process will speed up without the Chemo getting in the way. He appeared to confirm this. Good news. I am looking into going to the pool on a regular basis to strengthen the stomach a bit. I get bored swimming. Back and forth, you go. I will have to do it nevertheless.

Can we start eating raw meats again? I miss my steak tartar, sushi, and oysters. I was given the green light for sushi. Say it ain’t so. We decided on the spot that we would have that for dinner to celebrate. Diana, Nancy and her daughter Lily are coming over. Makes for a grand celebration.

Dr Hedley mentioned that we are in really good hands with his nurse, Shahnaz. We truly are. She is magnificent. She mentioned how much the nurses in the Chemo daycare like me. I walk in with my big laugh and cheer them up. The doctor just shook his head. All the nurses love him he says. Then gives me a gigantic hug before leaving.

Janet and I were left alone for a few minutes in the consulting room. She high fived me. This is the first time in almost a year were I could a glimmer of hope in her eyes. She seemed ecstatic over the news. She had a bright smile and a glitter to her eyes. That was enough to make me happy.

I phoned Fetneh and Fo’ad that night. It is always good to talk to them after news like this. It helps air my thoughts, clear the cobwebs a bit, get some perspective. I eMailed them of course, but that was not clear enough for them. Fetneh was jumping for joy. She made me promise to not withdraw from life because of this. The are chances of withdrawal symptoms creeping in if you are not careful. The hospital has been a home away from home, as it were. A very safe place to spend time in. You get sort of attached to these things. The routine. However horrible the Chemo experience is, you get used to the routine. The people. The support.

I assure her that I will not regress. I will keep the blog going. I may have a bit of trouble adjusting to the new freedom. We will see.

Fo’ad was just as supportive, of course. How does this change life? I don’t know. My curly head of hair may even make a comeback. I see no negatives in any of this. I become so much stronger when I am off Chemo for even a week. This can only be good.

We have lots of plans. We have been invited to all sorts of places. Long trips are out of the question. One day excursions within the vicinity of Toronto can be done. We are going to see Anne and Frank in Pickering, John and Sharon have invited us to their horse farm, Heather and Neil want us to go their farm. Heather reminded me that it is almost a year to the day when we went to their farm to share the news. Their friend Beth was there, also a cancer patient. She had a long conversation with me about what to expect. Strange to think of that now.

Devin is leaving us to go pursue a master degree in Change Management at the New School in New York City. We should be flying down on August 21. Sadness and happiness combined. I am ever so proud of him.

September will see me visit Montreal again to spend some time with Hong Lan. Janet will be attending the film festival in Toronto. My visit to Montreal will take some pressure off her. I have to talk to Hong Lan a bit more about what her remedies are. Stuff that includes acupuncture to increase energy levels. She deluged with so much information that I had trouble absorbing it all. A revisit is a must. To say nothing of spending time with Fetneh, of course. I will try and stay in the same apartment as before, taking advantage of Steve Mykolyn’s generosity. It is good to have a space of your own, specially when you are in my condition.

I lay down when we got home. All this stuff is a bit overwhelming. We had dinner and I returned to bed and made my phone calls.

Yesterday was my very first day of this vacation. I slept for a couple of hours in the afternoon. I also wandered around the house a bit lost. I have so many things to do, so many projects on the go. Where to start? Sleep of course. I am having lunch with Kali today. Looking forward to that. Planning the trip to New York when I get home from that.

Tomorrow is a new day. Taking us back to another sense of normalcy. Can’t wait.

I am bummed out. This has been an up and down week. My reaction to Neulasta went as expected. Tired, achy bones and so on. I only tool three Tylenol 1 pills to drive away the pain. Not bad considering my first experience with the drug. I got a lot done, which may be part of the problem.

I am not sure what it is that drives us constantly to the point of exhaustion. I discussed this briefly with a couple of other cancer patients and we all came up empty. It seems to be desire to feel useful again, after feeling like you are a parasite.

Did the laundry, OK, only half the laundry. Got the clothes in the washer, but no energy to transfer them to the dryer.

Visited my friend Sherry Ivankovic in Kitchener who has melanoma. She was supposed to be dead two and half years ago, but is still going strong. She also had a stroke to complicate matters which makes for interesting conversations. She loses track of what she is saying half way through a conversation. She repeats herself telling me a story on the phone, repeating the story in an eMail and again in person. Every iteration is as energetic as the first, as if is is the first time she is telling it. To all accounts, every time is the first time as far as she is concerned. We compared cancer notes. The similarities are endless. It helps to talk., Almost a sigh of relief when you notice the identical reactions to the drugs and our situation.

I visited another cancer patient, this one with pancreatic cancer who was admitted to the palliative care centre at the Princess Margaret Hospital. She should not be there right now. She was very strong when I went to see her. She was being released to go home for the weekend. She was admitted to allow the doctors to determine what pain medication would work best. Her pancreas and spleen were removed about eighteen months ago. She is still gracing us with her presence. I cannot imagine the amount of pain she is in. Stoic as ever, she still suffers. Morphine doesn’t cut it any more. New pain medication is being tested. I stayed with her for a while. Watched some soccer with her father. We talked quite a bit.

The conversations between cancer patients are very different when we are alone A lot more intimate. Small bits of information come out that are usually kept in the dark shadows of our existence. We allow ourselves the luxury of divulging and talking about stuff we would not normally discuss, even with our most intimate friends. A lot of stuff takes a while to digest, internalize, and finally verbalize in some fashion. The last part does not always happen. We prefer to keep some things very private. Don’t ask me for examples. Surely that would defeat the whole reasoning behind keeping some thoughts private.

I have been experiencing some pains for the past few days. I had to tell Janet about it. Notice the use of the word had. Did not want her to be concerned. I tend to think these things are normal and to be expected when we are subjected to our drug regimen. I had to tell her because I kept groaning and wincing every time I changed positions. The groans were totally involuntary and gave the game away. She is as always concerned and does not anything a being normal. Hard to know where the lines are.

I went to see an acupuncturist. My sister, quite rightly, thought it might help with increasing my energy levels, and might even affect my white blood cells in a positive way. I have tried acupuncture before quite successfully. That was years ago and I have lost track of my acupuncturist’s whereabouts. Hard to call her my acupuncturist when I saw her so many years ago. Went to a new person. A man named Tak. An experience not to be forgotten.

I arrived on time. Took off my shoes and went into his office which occupies the basement of what, I assume, is his house. I was asked to fill out the usual forms outlining the family history of diseases and conditions. Name, address, date of birth and so on. Illnesses during childhood: none. Illnesses during adolescence: none. Recent conditions and operations: colon cancer metastasized. Parental conditions: mother died of lung cancer, epileptic. There was last sheet that I presumed outlined side effects and conditions of taking the acupuncture. It was written in paragraph format while the rest of the document had questions and spaces for answers. I ignored the past page. This upset Tak enormously. I was chastised for not reading the page and providing answers. He was quite brusque about the whole thing. A man in my condition has other things wrong with him, and those are outlined in the last page.

I read the page and found nothing that pertained to me. I was fine except for the cancer part, and the fatigue, and low white blood cells. No gastro-intestinal issues, or whatever else he had on the list. You cannot imagine how upset he was by this. Impossible. This has never happened before. A man in my condition must have other things wrong with him. Whatever. I do not seem to fit into his mold. He seemed quite exasperated and finally asked: So why do you have cancer? The why question, as if we are to blame for getting cancer. There I was at the mall, there was a sale on and I thought I would give it a try and see how it fits. I replied that I would be more that happy to hear his reasons for people getting cancer. The answer to this riddle, should he know it, would make him a multi-billionaire. He did not appear to be amused by my response. I cannot help you, he says, since all you have is cancer.

We decided to give it a try anyways. I found the experience very relaxing. He left me on the table with the needles inserted in various parts of my legs, and a couple in my neck. The couple he inserted in the soles of my feet hurt a bit, but the rest were easy to get along with. He left me for a bit and I relaxed on the bed. Practiced my deep breathing exercises, and said some prayers. Almost fell asleep. He came back, removed the needles, made me lie on my side and applied some heat to various parts of the back and neck. Over. Done. Good bye. Paid him his $75. What a rough man. What a horrible way to treat a patient, let alone a cancer patient. I will have to write him expressing my dissatisfaction.

My nurse, Barb came by for her visit. She recommended another acupuncturist with whom I will get in touch shortly. What a flame out that experience was.

I have a lousy sense of direction. I am one of those people who would get lost coming out of a paper bag. I ask for directions all the time and fail to follow them, or misunderstand them or something. Such was the case when I went to Kitchener to see Sherry. A trip that should take a maximum of 90 minutes tool over three hours. I was quite out of sorts when I got home and went to bed at 6:30.

I have been totally exhausted ever since. I have been resting and sleeping a lot. Which is why I am bummed out. The Neulasta was supposed to have kicked in by now, boosting my energy. I will rest for the remainder of the day.

Tomorrow is a whole new adventure.

You know somewhere in the back of your mind, the question. You know the question,  don’t you?

What happens if the bag comes off while you are sleeping?

Janet and I have laughed nervously about this possibility. We imagined waking up in the middle of the night to change the sheets, shower, what else?

I  woke up around 2:30 for a bathroom break and assessed my situation. This is a constant. I felt I could wait till 4:00 to clean the colostomy bag. I woke up at 4:00. And fell right back to sleep. The good news is I slept through most of the night. This has become a non-event really, as  I sleep through most nights.

The smell. You know it when it happens. I woke up rather brusquely to the smell. It is now 5:45.

The smell happens regularly, and is usually due to the bag not being clipped on properly. You have to squeeze the ring all around and listen for the telltale click to make sure it is sealed properly. Every once in a while, you miss a click and the smell comes up. The reaction is to reach down and squeeze the ring again all around and are relieved when you hear the click you missed before. All good. This is a one handed operation.

At 5:45 this morning, the smell. There was really no reason for it. The bag was clipped on properly since the smell had not been there all night. But here was the smell.

I reached under the sheets to squeeze the ring. Something went dreadfully wrong. The ring was moist. Highly unusual. I felt further around, and it got moister. Wait. This was more than moist. I yank off the sheets. Yes, I have a second hand! The bag was off the ring entirely and lying on my leg.

Pick up the bag and make my way to the washroom to clean myself. By now, the discharge (how discreetly put) is all over both my hands. My worst nightmare. I clean my hands with toilet paper. Start the wash process. Clean the bag, inside and out. Clean myself. Then clean myself again. Wash my hands.

All the while, there is more discharge coming out. I am cleaning all he time, and cleaning again trying to catch the discharge as it oozes out. The roll of toilet paper is very active. I am cleaning feverishly. Finally get the bag back on. Check my body and start washing the discharge from various affected parts. Discharge is on my stomach, thighs, feet.

I come back to bed to check the sheets. Janet wakes up and I fill her in. Simple. The bag came off. Lights come on and we check the sheets Miraculously, nothing.

I sigh and start laughing. How different this would have been if it had happened on Saturday. I would have broken down in misery. As it is, I laugh, and get back in bed.

The smell. It is still there. Lingers as some smells do. Stuck in your nose. It won’t go away.

Get out of bed and check things again. The flange is soaked, and not necessarily in water. I have to change everything. Might as well shave and take a shower. Feel bad for Janet. We are both wide awake by now.

Discharge is constantly oozing out. How fast can I shower. This is getting funnier by the second.

I will cut this short. Shave, shower, air the skin, finally get the bag back on.

Smell gone.

My friend Gita wrote me to say she wanted to visit today. I asked her to call me before leaving her house which she did. I was fine and gave her the green light. The situation was dramatically different by the time she showed up.

The first chemo was an unknown. I was not sleeping well at the time. The combination of the two made it hard to handle the series of events that took place.

The situation was markedly different this time around. Diarrhea was expected to hit around Monday or Tuesday, and it came right on schedule. It was expected and not traumatic. Easily handled.

We had Ethiopian food for dinner last night This is the second time I have had spicy food. The first was when my friend Judith brought over some Indian food from my favourite Indian restaurant Utsav in Yorkville. The spicy foods keeps me awake as the stomach works overtime dealing with the unexpected surprise.

I do not get stomach cramps. There are no aches or pains. The only benefit of this bag thingy hanging on me. Gas rolls through the bowels and explodes into the bag with a hissing noise. The system then growls and wheezes and makes all sorts of noises as it deals with the spicy invasion. All of which keeps me awake.

I finally went to bed at four in the morning, and as I have said before, guilt free.

I was fully ready for Gita when she was due. I was peeling a pomegranate, one of my all time favourite fruits. I find the peeling a bit therapeutic. You just cannot rush the experience. So there I am in an apron standing at the kitchen counter peeling away to make sure the pomegranate is ready for Gita.

I was almost done when I started feeling hot. Flushed. Hard breathing. It took me a bit too long to realise that I was feeling nauseous. I rushed, and I use that term loosely, upstairs to take my nausea pill. It is hard to know where to keep all these pills. Took the nausea pill and went back downstairs to wait for the effects to take hold.

I have had nausea a couple of times. I have these wonderful nausea pills that take care of things almost instantly. You just have to take them right away. Which I did not in this case. I sat downstairs, upright, and waited for it to pass. It took a while, way longer than I like. I was not fully recovered by the time Gita showed up. Jill sent me some ginger candy to suck on. They help with nausea. I took one of those as well.

We talked for a while. Devin warmed up some pizza that was in the freezer. Good times. I took a nap after she left and woke up in time for dinner.

I am going to get my H1N1 vaccination in the morning. I am looking forward to this. Here is the issue. The vaccination may result in me having a  temperature for which you are supposed to take a Tylenol. But I am not supposed to take Tylenols to cover a temperature created as a chemo side effect. What to do?

Check list:

Diarrhea: gone

Nausea: gone

Temperature: none

Blood: only in my veins

Hair: intact

Sleep deprivation is probably the worst offender. It leaves you defenseless against anything else.

Anxiety comes a number of sources, the most likely of which is lack of knowledge.

Depression, well I don’t know about that one. I think I will stick with the first two for now.

I appear to have tackled the sleep thing very effectively. I do not sleep through most nights and find myself waking up and going downstairs to do something. Invariably, it means eating some fruit, reading the news on the web, watching TV and discovering that there really is nothing on, and going back to bed. We are fortunate to have a bed in the family room that no one is using for the moment. Provides a good place to lie down, toss and turn without disturbing Janet.

Anxiety is a whole different issue. The solution to anxiety, in my case, appears to be knowledge. I was anxious before the operation, though quite numb. The anxiety disappeared once the operation was done and we had a better idea of what to expect.

I was VERY anxious before the first chemo session. The anxiety was exacerbated by the lack of sleep. Janet tells me they were all very concerned over my well being and had no idea what to do to help me. That’s OK, I had no idea what to do either. On the way to the chemo session, I suggested that I would probably be better once the session was done and it became a more known entity.

The second session resulted in a day of anxiety as opposed to what happened before the first session. We are expecting the third session to be even smoother.

There seems to be no end of items to add to your anxiety though. The H1N1 vaccine is the latest. I am definitely on the list of people who should get it. There are side effects, or potential side effects such as fever. I have been told to get the virus as close to the next chemo session as possible. Something to do with the levels of my platelets. I am not allowed to take Tylenols to reduce temperatures that are created from having chemo. I have to go to the hospital if my temperature reaches 38. How do you reconcile this?

My third chemo session is to take place next week. Followed about a week later with a CT Scan to study the effectiveness of the treatment. And that is where the anxiety starts, both before the scan, and after, to the time where we see Dr. Hedley for the results. Janet and I discussed that this morning and we are attempting to come up with plan to do something to reduce the amount of anxiety that we feel certain will take place.

My brother intends to visit me in the next couple of weeks. That will distract me for  while and reduce the anxiety levels. My sister also intends to visit at the same time. The risk, though, is a huge increase of pent up anxiety when they leave. Enough to make you scream and rail at the sky’s.

This too shall pass. We will figure something out.

We have been conditioned to sleep at night. We feel guilty if we don’t. We feel as if we have not slept after a restless night. I am not sure why this is. But a lot of people have trouble sleeping at night. You would think there would be less guit associated with it.

Guilt Free Sleep means that you can sleep anytime you can. Not sleeping through the night becomes a non-issue. Don’t toss and turn. Get of bed and do something. In my case, the blog gets updated, I read the news online, eat something, and eventually make my way back to bed, usually within an hour or  so. I don’t feel bad about not being able to sleep. No frustration. Just get out of bed and do something.

I, of course, have the luxury of being able to sleep at any time of day or night. In spite of that, a strange thing happened when I made the decision to move forward with Guilt Free Sleep. I slept through the night with no drugs. I then slept through the next few nights as well. In fact  through every night. I wake up every couple of hours to pee. But that is the norm considering how much water I have to drink. But I fall asleep as soon as I go back to bed.

I am not sure why this is happening. No complaints, mind. It is a mystery.

I tried to sleep this afternoon and failed. But resting for half an hour rejuvenated me.

The result of sleeping is that I am feeling much better and am better able to handle the second chemo treatment. No side effects so far It is still early, though. The side effects showed up after the 4th or 5th day. I am ready for whatever.

I have decided to give up on the sleep problem. I will sleep whenever the urge hits. That is all there is to do. No guilt, and no attempt to sleep when society says I should sleep. I will read, play solitaire, the old fashioned way with real cards, snack, or whatever when I am awake. Sleep will come in due course.

Like now for instance.

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