Janet and I had a bunch of question for Dr. Hedley. They cantered primarily around the need to continue the Chemo Sessions if they were no longer effective. What were the repercussions of taking a Chemo Vacation at this point, or at the end of August as he was planning> Taking a vacation now would allow us to enjoy the summer.

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.

That is a strange expression if ever there was one. Janet and I went through a brief phase where we attempted to determine the origin of our expressions. It was taking too much time and effort. We gave up. I might have to start that exercise again.

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.

This is not for the squeamish.

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.

I am often asked if people can visit. The answer is always the same, call me before you leave home to make sure I am OK. Don’t call me the day before because I will not know how I will be doing the next day. And even then, there will be surprises. Visits are also usually short since I tire so easily. I have written about this before.

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

It is difficult to know what is your worst enemy. Somehow the all seem to be tied in to each other in a big conspiracy.

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.

I came  up with an interesting concept last week. Guilt Free Sleep. 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. [...]

The night before chemo, and the emotions are running amok. Not much to be done but try to keep them in check and move forward. 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 [...]

Sunday night had the predictable sleep schedule. There was a slight variation. I drove Janet to work, then went back to bed. We have an appointment with the surgeon, Dr. Kennedy at 3PM for a look see at various things. I still don’t know how they can tell whether the insides are healing or not. [...]

I have to get a belt in which to carry this stupid baby bottle. You keep forgetting that you are attached and walk away only to have the bottle dangle. Nothing happens, everything is taped to my hairy chest. That is the part the nurses enjoy the most. They make sure the tape is applied [...]

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