I Have Cancer - energy

Oncologist Visit - Wednesday July 21

cancer, chemo, doctor visits, support, the new normal, vacation 7 Responses »

Jul 232010

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.

Cancelled Chemo

Neulasta, blood count, chemo, fatigue 1 Response »

May 092010

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.

The week that was - ended January 16, 2010

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Jan 232010

The week atrted with the amazing news that led to the Euphoria post. What can top that for the beginning of a week?

Attended two sessions at the Wellspring centre. The first has to do with Brain Fog, the second Q-Gong.

Brain Fog

It turns out that Brain Fog is not restricted to chemo patients. We all have suffered from this condition at one time or another. You go to another room to get something, but forget what it was as soon as you enter the other room. Chemo patients seem to suffer from this condition with a slight variance, we don’t even know why we changed rooms.

The first session was geared to be an introduction of sorts, explaining what is yet to come. People talked about what they are going through. Nothing dramatic or surprising. Forgetting why you went to the store. Make a list. I did, then forgot where I put the list. I forgot about an appointment. Looked at the calendar three or four times and still forgot. Multitasking – what a joke. Can barely juggle one even let alone try to handle more. And the list goes on.

We will be doing exercises that will help us remember. Games and strategies. Word associations, and lots more.

Q-Gong

Fascinating. This is the mother of Tait-chi and similar exercise routines that have been developed over the years. Another discipline that tries to make you aware of your breath. we were taught how to breathe as it is the backbone of the other exercises. Through the stomach, not the chest. Breathe in through the nose, out through the mouth. We had to put our hands on our stomach to make sure it was rising and falling. The instructions got slightly more risky, at least for me. We had to push in on the stomach to expel the bad chi through our back. This is a bit problematic for someone who has had his insides cut up. At one point, the moderator decided I needed help with the pushing of the stomach. I had to stop her. Why she asks, that is the location of my operation, says I. Ah, she backed off right away and told the class to not do anything that would hurt them.

We also did an energy test of sorts. You put you hands out in front of and cross them at your wrists. She then attempts to push down your hands and you resist. Hands stay up. Someone stands behind the first participant and gives the person a thumbs down over their head. The same exercise leads to little resistance as the hands collapse. She asked me to volunteer, which somehow defeats the notion of volunteering, methinks. I stood up and extended my arms are instructed. She pushed my arms down with great ease. Turns out the thumbs down saps the energy from everyone inthe room. Bizarre to say the least. Doing a thumbs up reverses the process. I guess this means we have to enter rooms and give the place an immediate thumbs up to increase the energy level. Will have to try that.

All the exercises were terrific. I just have to discipline myself to do them regularly while at home. Working on it.

Other things

I am reading a bit more. The week was high in energy for me. No chemo, or anything else. Felt very strong, but was still exhausted by the afternoon. A bit strange. Just have to adjust. I think I maybe push myself a bit harder when I am feeling well resulting in the fatigue. No worries.

Went shopping, mostly for food and stuff. All good.

Short Temper

Uncategorized 4 Responses »

Dec 212009

I found myself being really short tempered for a couple of weeks. It seemed to pass once the Neulasta kicked in. Maybe there was a connection?

The effects of life on the brain and emotions is staggering. I am not sure if those are the right expressions, but it seems you sometimes have little control for what goes on in your head and how it manifests itself. Everyone around you is really careful not to say anything that might upset me. Yet, there it is, the short temper coming out when the phone rings and people say stupid things to you.

One of my pet peeves is the security questions that people like Hydro ask you. What is your name? And now for security reason, we have to verify some information. Your address, postal code and phone number. All three pieces of information are public. Open the phone book. All there. Hardly security questions. I found myself getting more upset than usual at these inane questions. Also at sales people calling from Florida trying to sell me new doors and windows. Insane.

The honeymoon is over. This is a bit like a marriage. At some point you wake in the morning and realise a new normal has set in. Like it or not, this is your new life. Adjust. Get on with it.

I am not in any way, shape, or form, minimizing my plight and the chronic condition I am in. The past two weeks have really brought home the fact that it this is the future. We have to get on with our lives. This means that Janet has to get out more often. People have to be a bit less careful around me. I have to get accustomed to going for naps in the afternoon. I went for a drive this morning to buy bread and stuff for the house. Drove Leslie to her dinner party in the evening. I can do these things, and come home in one piece.

I am not being rushed to hospital for anything. I am as healthy as a cancer patient can be. My immune system appears to be very strong in spite of the cancer. No, it is not easy, but this is the new life. A combination of hospital visits to see Doctors, or get treatments. Then a week of good strong health.

The mother of one of Leslie’s friends died the other day. The mother of one of Janet’s cousins died the other day as well. Somehow, these episodes appeared more dire to me than what I am going through. Seems strange to say this, but all of a sudden, I thought, how terrible. My life went into the background. Theirs seemed so much more important.

I am making plans. Thinking of the future. It’s all good. Not that much energy to carry things out, and a bit scared about that. How can you start a project and do it only every two weeks? But there are options, and most of them can be done online.

Option 1. Become a WordPress expert of some sort. Create themes and plugins that I can sell to others. Maybe set up blog s for people. Others are doing it, and I can to. Certainly fits in nicely with my background. I just need to gain some expertise in WordPress. There are lots of books out there. Also need to become better at markting the blogs. But all that comes with practive and a lot of reading.

Options 2. Become a therapist of sorts to help others with chronic conditions. Take some online courses.

Option 3. A lot of people are pushing me into the art world. Daryl just bought me a wonderful water colour paint set, including paints, brushes, and paper. Included in the package is a free course from her sister who is a painter of some repute. I could become a painter, and incorporate my pictures, and maybe even some calligraphy. The possibilities are endless.

Al I need now is the courage of my convictions to do something. I cannot carry on like this for very much longer. The healthier I get, the more urgent is the need to do something, anything. Word Searches can only help so far.

One more thing, I have not shaved my head yet. It is thinning out, but there is still so much of it, that most people cannot tell I am losing it. For now, the hair stays.

The Week That Was - Ended December 12, 2009

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Dec 112009

This has probably been the most difficult week since my operation. And that is saying plenty. Remember the wagging fingers letting me know in no uncertain terms that I had a major operation. Time heals all, and memories fade, specially memories of things that are hard to comprehend or come to terms with.

The first few months have crated all sorts of emotions, most of which you are all terribly familiar with by now. The constant expectation to wake up in the morning and find that this was a dream, a case of parallel universes, sliding doors, is always there. The thought that this was a wonderful joke, we all laughed, can we get back to reality now? is pervasive.

Life goes on.

This week was focused on getting my white blood cell counts up. I still have no idea, nor can anyone tell me, why your white blood cell count fluctuates so amazingly. From .8 to 6.7 back to .8. The Neulasta shot was supposed to make ne feel like a new man. Not so fast. A new man I am not. I sleep every afternoon for a couple of hours in order to stay up at night and spend some time with Janet. I still end up going to bed around 9PM.

We attribute the exhaustion to the low white blood cell count. This conversation has really dominated the week.

I had lunch with my friend Yama yesterday. We met in a food court in the business district. I walked from Janet;s building where we get to park the car for free, to the business district. All underground. Much warmer that way. Temperatures in Toronto are now showing tendencies toward winter. Minus 5 to 10 Celsius. With the wind bearing down on you, it gets much colder. So underground it is. Hard to imagine what it is like if you live in a warm climate. But there major paths built underground that allow you to go from one place to another without seeing the light of day. Welcome to the cold white north.

The walk was interesting. I don’t go out much where I am not in control of my surroundings. I go to the market mostly during the week when there are fewer people around. Less chance of having someone sneeze on me. Everything we do is geared to minimizing exposure. Here I am walking through the underground at lunch hour. Painfully aware of the multitudes running helter-skelter from one place to another. Some in an awful hurry, hardly paying attention to the people around them. I found myself walking along the walls, stopping often to let some yahoo breeze past me. It was just a bit scary. Not a lot scary, just a bit, as you come to realize how incredibly exposed you are.

Lisa Merdjanian was always complaining about taking the subway and putting up with the wheezing and sneezing multitudes. I am sure she is still complaining, except I am not there to listen. I suddenly found myself in the same predicament, looking out for people showing the slightest inclination to sneezing, or coughing.

The lunch was fun. Good to be out and talking about almost anything but what I am going through. I had to make a concerted effort to not talk about my chronic condition. Steer the conversation away. Talk about something else. Technology is good. I am trying to keep up with the trends, which are nothing short of amazing. Life is also good. I talked about our new fridge and dishwasher. Not very exciting, but it is cool. Trying to get back to some sense of normal. There is always the soft voice to remind yo of reality, but never mind that. Keep talking. Make jokes. Whine about things. All good normal conversations.

The walk home was more perilous. There were fewer people out, but I was very tired. Walked with one hand grazing the wall as a point of reference. Still managed to go to the market and buy some fruits. We are out of bananas and that just won’t do. I buy fair trade bananas at the market which taste really good. Some pomegranates, pears, apples, blueberries. The usual.

Small things that make a difference. You have all read about my bag coming off in my sleep. It happened again a couple of weeks ago when my hand got caught in there somewhere. I heard it snap off. It took a very short time in my sleepy haze to realize what had just happened. What a mess. Janet woke up and we changed the sheets. How do you keep that bag on? Some genius suggested we look into this spandex girdle thing that pregnant wear over their pants. Turns out a lot of pregnant women keep wearing their regular clothes, except they can no longer do up their pants. Someone has come up with this spandex thing that looks like a tube top that women wear over their pants. It covers thar pants all the way up their bellies. Simple. We bought one, and Fetneh just sent me one which came today in the mail.

Instant relief is what this is. It covers the bag completely. No way for the bag to come off. I wear one every time I get into bed. It might also help solve some other issues. More on that in the future.

Some of our close friends are coming for dinner tonight. They are bringing dinner with them from Riz, a Pan Asian Cuisine restaurant. This takes a whole amount of pressure off Janet and Devin. All we have to do is vacuum the house and neat it up. I have to take a nap to make sure I have the energy to survive a major part of the evening.

Tomorrow is another day.

Art Therapy: Session 3

Uncategorized 3 Responses »

Nov 192009

I am sorry to report right from the start, that I did not take pictures. I am disappointed. The opportunity almost presented itself, but I was not able to explain why I wanted to take them. More on that further down. The mood in the room was light and very positive. Only three others showed [...]

Art Therapy: Session 2

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Nov 112009

We had Art Therapy today. Must be Wednesday. Three people from last week did not show up, two new people showed up. Except they are not new since the moderator and one of the participants know them. Hey, how are you, long time. And so on. This is a safe place after all. Five women [...]

Halloween

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Oct 302009

Tomorrow is Halloween. To celebrate or not? We celebrate every year. Make a production of it. I usually carve multiple pumpkins, some with two faces. Takes a lot of patience to carve all these faces and make them unique and scary. It is fun and well worth the effort. The second Halloween in our current [...]

Inner Strength

Uncategorized 5 Responses »

Oct 232009

One of the recurring themes is where my inner strength to cope with this is coming from. It is a good question, the answer to which has eluded me. I attended a Relaxation and Visualisation session at Wellspring this afternoon. There were six of us in the room at various stages of the journey. The [...]

Oncologist Visit - Wednesday July 21

Cancelled Chemo

The week that was - ended January 16, 2010

Brain Fog

Q-Gong

Other things

Short Temper

The Week That Was - Ended December 12, 2009

Art Therapy: Session 3

Art Therapy: Session 2

Halloween

Inner Strength

My Pictures

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