What to say. It has been a tough couple of weeks. I started becoming tired, almost as if I was on the original chemo regimen and started spending more time in bed. Very lethargic. Lost the will to do anything almost as soon as the will to do something emerged from the depths.

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.

Every once in a while, you wake up in the morning expecting this to be a nasty dream. But there is this bag thingy hanging off your stomach to remind you of the stark reality.

We, Janet and I, have this dream often, except she has it without the bag being on her. We remind ourselves often that this has been a very short journey so far. The operation was only on September 2.

My wound nurse, Annmarie was over on Tuesday to look at the gash on my stomach from the sutures that did not hold. No gash to amuse her. I am healed. One less bandage. Another milestone.

I am done with the daily or twice a week visits from the nurses. Barb called today to try and figure out what my needs are moving forward. The only thing left for the nurses to do is to come every two weeks to disconnect me from the chemo bottle. They are not rid of me just yet.

Annmarie and I talked for a while while she filled in her report. Talked a bit about eHealth. The information the nurses complete on us remain in our possession. They are not transferred to our electronic files. A glaring gap, I think, in the information gathering process.

We talked a lot on how we should keep our sanity. There is no set rule of course. Everyone has their own method. We talked about relationships that are created with patients. How different we all are. The work load. Some of the nurses work from nine in the morning to nine at night. We talked about the need for more communications between the nurses and the hospital staff. More training. More openness. I have to invite her over for a cup of coffee one day.

One more step taken normal a more normal life.

Today was a good day.

Got my H1N1 vaccination from my family doctor, or at least the nurse. My doctor was giving a speech in Calgary. Something to do with whether extroverts or introverts get better grades or perform better. I will have to get the lowdown from her next time we meet. I have had no side effects from the vaccine. The conundrum with this is the following. One of the possible side effects of the vaccine is fever that they recommend you take Tylenol for. One of the side effects of chemo is a temperature for which you re forbidden to take Tylenol. What to do? I got the vaccine a week early so it would not interfere with chemo.

Went for a drive to Bayview Village, all by myself. This is the longest drive I have taken, and the longest I have been out of the house. It felt very good, somehow. I did not take a nap when I got home. I tried, but the phone kept ringing, so I gave up. Did some research in changing the look of this blog. Watched some TV. Not much. Still prefer quiet over noise.

Went to Chapters in Bayview Village and saw a couple of books I think I want to read. Just that is interesting. I have a book on my shelf in the bedroom that I have to read, and a couple of others downstairs. First time in three months that I felt like reading something that has nothing to do with cancer.

Devin has a date with me tomorrow. We are trying to make this a regular day for the two of us. We are going to Taps in the morning to look at shower heads, the height of excitement, I know. We are putting a shower in the bathroom on the second floor. Then lunch (shawarma), and finally a visit to the botanical gardens downtown. I think I will pass on the relaxation and visualisation session this week just to spend more time with him.

It all sounds a bit boring and every day. That, of course, is the whole point. I am attempting to get some sense of normal back in my life.

I accept that chemo week is going to be bad. Maybe that is too strong, how about not good. Chemo week starts on Thursday, with a preamble on Wednesday. It should end the Wednesday after, hence the week. No normalcy in defining the week. So there will be the occasional redefinition of things. Once chemo week is over, the more normal part of life has to start. I did say ‘has to start’. I am not giving myself a choice.

I have to start taking pictures again. Go to the movies. Eva Almos has volunteered since her schedule is more flexible, which allows us to go to a matinee. Fewer people, means less risk of catching something. More reading. More meeting people for lunch at their place rather than mine. More of anything that will make me almost forget that there is a bag hanging on my stomach.

I guess that is why the occasional cheating about normal definitions does not matter. You can never forget about this bag. The tape that binds it to your stomach is a perpetual reminder. Some level of normalcy is a must.

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.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha