Now what?

Nothing new to report as far as the session itself is concerned. They were a couple of hours late. I am not sure how this process works. They were late because the drugs were late in coming up from the pharmacy.

They knew I was coming. We had an appointment and everything. I have not missed one yet. Always on time. Predictable. And yet, here I was waiting a couple of hours for the drugs to come up. My blood count stood at 6.6. I was hoping for it to be higher given I had just come off a Neulasta week. Beggars can’t be choosers. Just go with the flow.

All is not lost. We are ushered in to the daycare chairs. I was offered a bed or a chair. Much prefer the patter. New nurse, again. They connect you to the saline solution to flush the system and make sure you have enough liquids in you. This is a blessing on hot days when you dehydrate quicker than you can possibly imagine.

Janet drove me in. She has the week off and was going to see her father after dropping me off. The Shriners are in town, and have blocked road access tot he hospital. I had to walk a couple of blocks to get to the hospital, through the Shriners who were almost ready for the parade. They do a lot of good work, but look to me like a bunch of overweight white men well past their prime. I wonder what their future is, and who will take over their good deeds.

The saline solution was good for me given the couple of blocks walking through our extreme heat. Really hot, over C30degrees. Did not cool at nights either staying well in the upper twenties all week. The house is still cool, but I dehydrate very quickly. No amount of water seems to do the job.

Janet came to pick me up around 5PM. A number of patients kept asking for the score in the FIFA game. The atmosphere in the daycare was light. I noticed more young patients than before. Does not bode well for the future. There appeared to be fewer patients as well. Not sure why. As I said way up above, not sure how their system is set up, even after being in it for almost a year.

The Chemo week itself has been more interesting than usual. My reactions have been the same. Fatigue mostly, though less than usual in its intensity. What has caught me by surprise this week is the nature of the fatigue. I wonder if it has to do with the heat. I seem to be able to go on for while, than suddenly collapse. A couple of hours of sleep and I am back on my feet, only to repeat the process. There appears to be no rhyme or reason to the fatigue. I am not extending myself any more than I have in the past. The sudden downturn is what is confusing me. We will see if this repeat in the next Chemo session due in 10 days.

I am now waiting for Judith and Arlin to come over for coffee at the Rooster. Janet has gone to a friends farm for the weekend. I insisted she go. Will do her good to be out of town and away from me, even if it is for a couple of nights. She should come back well rested.

Thanks for being there.

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.

I took public transit to the hospital. Janet and Devin are both working. This is really a non-issue. The streetcar is almost at our door. Very convenient. Arrived a bit early, taken in on time and released right on schedule. Another new nurse. Again, very official. Name, number and date of birth, over and over again.

The process is very normal and pain free by now. Even the side effects are taken in stride. Took a look at the blood results. My white blood cell count is down to 2.3 which is OK for Chemo. The cutoff occurs when the count goes below 1.5. My liver enzymes are not doing anything special. Some are up, others down. These are used as a guide more than anything else. Numbers going down would indicate stabilization, up would be a bit of a disaster. This has me a bit concerned. It is not a good sign and I am getting apprehensive about visiting the oncologist the next day. I will have the Neulasta shot on Thursday once disconnected from the baby bottle.

We went to see the oncologist on Wednesday, June 16th. It was a very short visit. Not much to say really. I am not showing any of the side effects they are looking for. No throwing up, lack of appetite, weight loss, upset anything. Just fatigue, discoloured skin, and cracking nails. Normal. I have stopped reacting to the treatments. The body has adjusted to all the drugs. This is as good as it gets. We are now in control mode. Five more sessions of Chemo, then maybe a rest for three months before moving on to the new cocktail.

We are planning to go to Montreal for the July long weekend. My brother Fo’ad will be joining us, some sort of small family get together. We did this about three years ago. We rent a restaurant called Quartier Perse for an afternoon. The owner, Mahin, loves us. Her food is amazing. Highly recommended. Tell her I sent you. We rent her place for an afternoon and invite all our friends to join us. Everyone gets to see everyone with very little fuss. No dishes to wash, house to clean, people to serve. I am looking forward to it.

We asked for another week off Chemo in order to enjoy Montreal with full strength of mind and body. Keep in mind that at the beginning of this adventure, a week off was not even a consideration. No fuss now. Too many chemicals in the body. Live your life. Go and enjoy.

Janet and I went home in a bit of a stupor. Not sure how to react to any of this. What do you mean this is as good as it gets, and live your life? My numbered days just appear to have become a lot smaller. The amazing Doctor Hedley does not give out numbers. So useless and build false expectations, or negativity depending on the numbers issued. Nor do we talk about Stage of Cancer. You are alive between stages 1 through 4, dead when you reach stage 5. Again, these are so arbitrary. They amount to nothing except making you fell either defeated or buoyant. Both false feelings.

The hidden message is unmistakable. I woke up from my stupor through the next couple of days. Spoke with Fetneh and Fo’ad. Kali and I had lunch and touched on the subject ever so briefly. No need to ruin a good lunch. Enjoy your life. Diana, Nancy, Judith all had words of comfort. None of us either know what any of this means, or are willing to broach the subject just yet.

I keep saying this, and I will say it again. I am feeling far too well for things to go awry now. I am strong and vital and am living a full life. I am in the process of designing a couple of web sites for a couple of friends. Both are computer businesses, but very different from one another. I am quite excited by the projects. I am living my life, and am not prepared for any interruptions.

We hired a gardener to look after our downtown hacienda. I no longer have the energy for it. He is very good and has made the garden look amazing. Very organized. Not my style. I like things to be more organic. Most people hate that. This is a good change, specially if we decide to sell the house at some point. I love to sit in either the back or front yards and just look at the garden, enjoy the trees and brush, and the very few flowers that manage to grow. We have far too many very mature trees in the backyard. The shady garden overshadows everything. Moss instead of grass. A pond in the back that gurgles in such a satisfying way. Calm and serene.

Janet and I sit on the front porch once in a while. Drink coffee and watch the passers by. Some one will occasionally look up and nod or murmur a very quiet and subdues “hi” as they walk by. No one feels comfortable opening the conversation, invading your space. I guess it does not help that we have a fence around our property, the better to protect the cats in a dog endowed neighbourhood. The dogs insist on chasing the cats who find refuge behind the iron fence. It is not a high fence allowing for easy conversation over it, but people are shy.

We have noticed that the bigger the house, the more likely people are to stay inside and not venture into the outdoors. A couple of our neighbours know about what is going on. Most just say hi and walk by. We had dinner last night at Marianne’s. She lives two doors to the east of us. John Brown who lives three doors to the west also joined us. I made rice. Marianne made steak. A glorious combination. I had a wonderful time. They are very supportive people full of love and comfort.

We are spending today at Philip’s, Janet’s brother, celebrating Fathers day. Devin is trying to take the day off, though I have no idea if he was successful. Philip has a swimming pool in his backyard. I might just go in for a swim and see how it goes. I have to cover my bag with one of those pregnancy skirts. All I need is for the bag to come off while in the pool. Yikes.

Live your life. New motto. Stay positive. Not that we weren’t. Just seems that a new sense of urgency is suddenly overshadowing everything else.

Janet and I will spend just a bit more time together, specially in the summer when there is so much to do and enjoy in this city.

Live your life. Good motto for all, methinks.

Thanks for listening.

Chemo on May 4th was postponed by about a week. My white blood cell count was very low at 0.8. Janet was right on the weekend. Dr. Hedley recommended I do another blood test on Tuesday morning. These things are pretty fluid. The counts go up and down with great regularity.

I went back in on Tuesday morning are 8:30. The earlier the better. Takes an hour for the blood work results to make their way to the Chemo Daycare. Once approved, it takes about two hours to get the drugs ready. It pays to go in early. I went home after the blood work. No sense in hanging out there. We live about ten minutes away.

Got back to the daycare at precisely ten for my appointment. I explained to the admin person that my white blood cell count had been low and so on. Ahh, she said, right. There is a red tag on your folder which means Chemo is a go. They cannot look at my results, nor can I. Only a nurse can. And? No, cannot see a nurse until I go in since there is a red tag on my binder.

I waited an hour before deciding to go get a bite. They give you a pager. You have to stay in the building. No issues there. There is a Druxy’s in the building. I go down and get a bite. A lovely balanced diet. Fruit bowl with yogurt, and a chocolate bar. Go back up around 11:01. I know that because the admin person asked me where I had been. They paged me at 10:55 for God’s sake. What took so long. I ignored her. The nurse wanted to see me.

They made a mistake. My white blood cell count was down to 0.7. No Chemo was possible. I complained about the admin staff. The nurse suggested I complain to the hospital. She cannot do anything about it.

I was very upset at the waste of time. I could have gone home at 10:05.

I came home and wrote a letter to the customer relations person at the hospital. That conversation coming up in a separate entry.

I came home and rested. My energy came back with a vengeance on Wednesday. I am not sure how to explain my feeling when my energy returns. You feel like the walking dead while the energy is depleted. Very emotional. Cry at anything. You then wake up one morning and your energy has returned. You feel like a new person, almost jumping out of bed. New day, new person. You run around getting things done. Race against time. No rest allowed, too much to do, too little time. There is a poem in there somewhere.

You pay the price at some point when the energy is depleted. You crash and sleep hoping to recharge the batteries so you can start getting things done again. My energy level has lasted so far. Chemo is scheduled for Tuesday again. Neulasta on Thursday. See what happens. I am resting for the next couple of days.

Playing on the computer is resting for me. Hence the blog entries.

Thank you for being there.

Not really, just seemed that way. I got my Neulasta shot as directed on Monday February 8th. As you may know by now, Neulasta kicks the living daylights out of me. Far worse than the chemo. The week is plagued with a constant temperature, low but constant. Extreme fatigue accentuated by bone aches that seem to travel through the body before settling somewhere, like the lower back. The process is over within a week, usually resulting in boundless energy.

Then came the cold. Started on Thursday last, came into full force on Friday relaying me to the bed on a continual basis. Temperatures fluctuating wildly between normal at C36.5 right up to C38.2 (F100.7 at its zenith). This went on for days until Janet insisted we go to emergency. Fo’ad was here for the week, I had all kinds of plans for us, all for naught. He and Barbara kept themselves busy while I lay on the couch pretending to be alive.

The emergency staff put us in isolation. They wore the yellow gowns and gloves and masks. I felt pretty safe from whatever disease they might have been carrying. Blood was taken, vitals signs taken twice, once in triage which showed my temperature to be normal, the second one showing some level of temperature. A chest X Ray was also de rigueur, just to make sure there was nothing in there, since they seemed to hear some sort of stuff lurking in the interior.

The blood came back clean with a high white blood cell count. Thank you Neulasta. The chest X Rays came back clean as a whistle.  I have never quite figured out why we consider whistles to be so clean after spending time collecting the spit of the blower. But there you go, lungs were clean. 3.5 hours later we are headed home. Viral infection. Drink lots of liquids. Call your oncologist tomorrow.

Did I forget to mention that their computers were down? All night. Everything had to be done the old fashioned way, paper, phones, conversations. Hence the 3.5 hours.

I felt very bad for my brother who had driven all the way here only to find me in a state of total bed riddeness. He fellt bad that I felt bad, and the circle continues.

Fetneh also came by and stayed overnight. Had a wonderful time with her, as always.

I left a message for Dr. Hedley who called to get a picture of the situation. Chemo was a go as far as he was concerned. The major part of the cold should be over by Thursday.

Fo’ad and Barbara left on Wednesday. No sense in sticking around with the sicko. They had planned to return on Wednesday all along. Fo’ad had mentioned the possibility of stayin an extra day, if it would make a difference. Did not seem to make any sense. Off they go.

I woke up Thursday morning as if the previous few days had never happened. No temperature, slight cough, full of energy. Bring on the chemo.

As you might guess, chemo has become very routine. Walked in all alone. Janet came to pick me up at the end. I watched the nurses going to and fro at a brisk pace smiling and cheering the patients along. Have I mentioned how wonderful these nurses are? Truly amazing.

We went out for dinner last night, for no other reason than to get me out of the house. I went to the market in the morning. Came home and went straight to bed. The night out was welcome.

C’est tout pour cette semaine. A bientot.

This turned out to be a very hard week. I will have to write about it a bit later when all my thoughts have been worked out. Sorry, but I have to think things out. The emotional affects the physical and vice-versa. The first part of the week was hard emotionally. The rest was hard [...]

Who knew these bastards have such an effect on a person. Today is Neulasta day. You can almost feel the energy draining from your body. Have I been compensating? Trying harder to make a go of things? Or do I really get this weak? It is truly a maddening set of circumstances. My prescription was [...]

The Oncologist We received an eMail from¬† our Oncologist”s assistant, Shahnaz, that we should come in ad see Dr. Hedley on Wednesday, the day before our chemo. He needs to see the blood results and discuss us taking Neulasta, a drug designed to boost the white blood cell count. It appears to be standard release [...]

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