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 not ready. Waited an hour but no one appeared to be around. Sent eMails to all. Finally went home to rest, only to receive an eMail asking me where I am because the prescription is being prepared. Went back, waited a bit, got my shot. It is really hard for me to stay mad at my Doctors and Nurses. They are all so wonderful to me. Caring and all that wonderful stuff. One does wish things would go just a tad more smoothly at times. This sort of stuff is very exhausting. It takes a lot of concentration to move around at times.

It occurred to me this morning, that life appears to be a lot like buying a new television. You buy a new TV but the crappy programs remain the same. I wake up in the morning, and my crappy program has not changed either. Same old bag, same old chronic condition.

I had a bite to eat at Druxy’s which appears to be the only place to eat at the Princess Margaret Hospital. At the very least, it is conveniently located on the first floor by the doors, just in case you need to make a quick exit. All their tables are for four or more people, which is a bit strange, but who am I to quarrel. There I was enjoying some sort of pasta, looking forward to the bowl of fruit that was waiting next in line, when this lady comes up and asks me if two people could sit at my table.

I love the way we talk. How to answer? I suppose they could. Depends on their weight, disposition, and God knows what else. I smiled and said of course they could. She promptly sat her friend down in front of me while she went to get some food.

Her friend was the patient. She, in turns out, is the neighbour and long time friend. They live in Barry, which is an hours drive North of Toronto. They come in every day for radiation therapy. Lets get real. No one is here for entertainment. We all have some sort of cancer or another. This very charming woman has cancer of the nose and throat. Her nose has been removed. There is a big bandage in its place. Soon to be a new nose.

We had a very long conversation. Specially since I have this wonderful way of asking questions, as in: “So, what happened to you?”. So friendly and delicate of me. I hastened to explain that I too had a chronic condition. Interesting watching the two of us talk about our conditions. Both of us are still totally baffled by our circumstances, wondering what the future holds, and what we can do about things. How to stay positive, busy, active. The same stuff keeps making the rounds.

There I am with a bag, and she without a nose. Damn.

Her husband died three years ago of cancer. Her neighbours husband also died of cancer. I got their address, just in case you want to know what area of the city to avoid. We talked about death, which seems like another recurring theme amongst cancer patients. Nothing heavy or teary making, just a normal everyday conversation about the end of our personal times. Can you spell surreal? They asked me to look up their husbands if I get there first. They are the ones drinking beer, and fishing. Easy to spot.

The conversations amongst cancer patients all seem to revolve around the same topics. I am hardly surprised by this. We talk, come to terms with, and accept a situation, only to go through the same path when we meet someone new. Do you cry? Feel down once in a while? Put on a brave face? Wonder, and keep wondering? Tired? Exhausted? From the situation? From thinking too much? Are you reading? Can you concentrate?

In spite of everything, it was a great conversation. I have to end this with a a story I told the ladies. We were wondering why we find it so hard to sit at  table with a stranger, specially in a place like Druxy’s where there is an obvious shortage of tables.  I had a training contract with the Federal Government. We were located at the Sheppard Centre. The mall had a food court, as they all do. Their tables were huge and round accommodating about ten people. The chairs were those really silly mushroom stools.  You had no choice but to sit with strangers. One of the employees I used to have lunch with was excessively shy. He hated sitting with strangers. Lunch must have been a very tense experience for him. It turns out it was, specially when he went with me, since I will sit and talk with anyone.

There we are finding a place to sit when I locate two seats beside these cute young girls.  No fool I, we sit beside them and I strike up a conversation. So , how are you. The first girl tells me that she is having a terrible time with her period. Cannot believe how hard it has been. You could hear my friend hitting the floor in a dead faint. He didn’t, thank God, but he did mention to this to everyone back in the office. Felt really bad for him.

Monday, Nov 23

Had an appointment to see the surgeon, Dr. Erin Kennedy. She was ecstatic. Have never seen her so amazingly cheerful. You look great she says. Have you seen your CT Scan report? Yes, we say, met with Dr. Hedley. Don’t pay any attention to it, she says. The increased size of the tumours is minor and to be expected. Ignore it and move on. She was positively bubbly over this.

We told her about the blood results that I posted earlier. Oh my God! The news gets better and better. She looked at my scar, which I must say looks remarkably good to me, and was even more excited. I have my hair, my scar is beautiful, my blood results positive. All is good with the world. She gets extra points.

Discussed the longer lasting effects of the last chemo. She is not surprised and mentions casually that the F5 chemo drug is cumulative. We should expect the effects to last longer. Great.

Next appointment on January. We will be seeing her for a long time.

Tuesday, Nov 24

Nothing really remarkable happened. I am tired, more so than usual. Slowly getting psyched up for the chemo on Thursday. Hopping that this week, the effects will not be so long lasting, in spite of what Dr. Kennedy says.

Wednesday, Nov 25

You have read all about that fateful day in my Art Therapy page. Devin picks me up from the Art Therapy session and we sometimes go out for lunch or something. I am too tired to go anywhere. We come home. I eventually do what I do every day, take a nap in the afternoon. Devin has to go to work. He plays the piano, plays on the computer, and finally goes. I spend the rest of the day reading articles, and doing my Word Searches.

Thursday, Nov 26

Drive Janet to work and myself to the hospital for blood work. Chemo is at 1:30. Doing my blood work at 9:00 means they will get it on time for the chemo session.

Drive over to Paulee’s house to pick up her dead computer to take to Steve’s. Her hard drive has crashed. It is fatal.

Go to the pharmacy to pick up my drugs. They do not have a renewable prescription. Call the Doctor and leave a message with the wonderful Susan, his assistant. She faxes the renewal over to the pharmacist, the equally wonderful Farrah who fills it right away. I go to Dash kitchens to grab a bite to eat while all this is going on. I am beginning to shake a bit from lack of food.

I call the Chemo Daycare unit before taking my drugs to see if chemo is a go or not. The nurse gives me a bit of a hard time until she recognises my name. Everything changes, and she is sweet as pie. No chemo this week. My white blood cell count has gone from 6.7 to 0.8 in one week. Too low for chemo.

I am very disappointed. You psyche yourself up for the drugs only to have them canceled. I have to go in to the daycare to have the pin removed from the Porta-Cath. The nurses are as cheerful as always.

On my way out, I run into an East European couple we met on our very first chemo session. She also has colon cancer and the requisite bag. She was waiting for her blood results. Her chemo was postponed the week before because of a low white cell count. I sat and talked with her for a while. She does not appear to have anyone to talk to about her cancer. We talked about the headaches that we get that feel like migraines. Tylenol has no effect on them. Only sleep seems to cure them. We talked about our continual exhaustion. She did not know that she could get her blood work done earlier in the morning, so she does not have to wait in chemo daycare for the results. She sounded tired. I hope I run into her again. Her husband is always with her.

Friday, Nov 27

This is my date day with Devin. He asked me what I wanted to do. I slept, virtually the whole day. I was exhausted. Not sure if it was the let down of not getting chemo or what. He went out to his club and ran a couple of errands. I stayed home. It was a truly bad day for me.

The only thing that happened to cheer me up was hearing from one of the participants of the Art Therapy session. We are now exchanging regular eMails. This is fantastic.

Nothing more to say about Friday.

Saturday, Nov 28

Miraculous recovery. Janet forced me out of bed. She did not have to try very hard. We decided that I have to force myself to get out of bed and do things. We went to the market and bought some food. It was great to see some of the merchants who know me. Big air hugs all around. Murray and his son Allen are particularly attached.

Came home and took a nap.

Went out later in the afternoon with Judy and Arlin to the Mercer Gallery to see an exhibit on advertising in magazines of the 60′s, 70′s and 80′s. It was very cool. Had coffee after and came home totally exhausted, but in a very positive way.

I cooked supper. Spaghetti with my patented tomato sauce. Delicious. Sorry for not inviting any of you. Maybe next time.

Sunday, Nov 29

Fetneh came for a visit. Always a welcome sight. We had a great time. And yes, I had to take a nap in the afternoon. I was exhausted by the time she left. I think I may have a recurring theme in my life. But again, a good and healthy feeling. We talked about all kinds of things.

Carys, my four year old niece was dropped off to spend the day with us. Paulee was going to a healthy living show. Carys is very shy and it her virtually the whole day to warm up to Fetneh. It was a delightful day. I played with Carys for a while, but could not keep up with her. Damn.

Janet spent a major part of the day with her Dad. Good thing. Glad Fetneh was here to keep me company.

All-in-all the weekend ended on a high note.

Not easy.

I have spent a lifetime helping others with no expectations. I have not been the centre of attention. In spite of how extroverted I appear to be, I am not comfortable being the centre of attention. I started doing the family laundry at the age of 15. I would help my mother vacuum. Wash the windows every spring. We had storm windows which meant you were washing two sets of windows. That was just the way it was.

My parents held firesides every Wednesday night. Firesides are events held in Baha’i houses where we tell non-Baha’is about the Faith. A lot of people would show up for these evenings. We would end up feeding a lot of the students, providing dinner for about 20 people. Fetneh and I had supporting roles. She would help with the cooking. We would set the table, clear the table, wash the dishes and help get things ready for the coffee/tea that would be served at the end. Mom would inevitably make her patented banana cake covered with fresh cream and more bananas. Yum.

At the end of the evening, I would end up driving a bunch of people home. Mom would insist. It was too cold. For those of you who have not experienced a Montreal winter, I suggest you go there for a vaction anytime n January or February. It will forever change your notions of what cold really is. In the days before Global Warming, we would regularly see winter temperatures of 30 below zero last through the whole winter (at those temperatures, it matters little if it is Farenheit or Celsius). And if it was not cold, it was warm enough to snow, which you had to shovel before it froze as temperatures dipped again. Montreal would average 150 inches of snow a year.

We went to Swaziland when my father died in 1999. We had to pack up his stuff. ShooShoo was there with me. We were going out to see some friends one night. I was dressed in shorts and a Hawaiian shirt. The locals were horrified. You can’t go out like that, they said. I did not recall any African rites that stopped me from wearing either shorts or Hawaaian shirts. No, no, they said, too cold. It will be 10 Celsius tonight. Yeah, OK. Call me when it gets to minus 20. The guy looked at me. I thought maybe I spoke too fast, but no. He looked at me and said he cannot even imagine that sort of cold. True enough. Until you live through a Montreal winter, you have no idea what cold is. Though I am told that Winnipeg might beat Montreal.

My life has been nothing but not being the centre of attention and looking after others. I am no angel, mind. People have called me all sorts of things. I am painfully aware of my shortcomings.

Going from looking after people to being looked after is very hard. No, that’s not strong enough. Excrutiatingly hard. Having to ask Devin for a glass of water because I could not get up to get my own. To watch Leslie clean the house and not be able to help. To not be able to go shopping for food. To have to rely on someone, anyone for the least of things. Not good. And not easy to get accustomed to.I would often escape to the bedroom with the pretense of being tired.

Things have improved though. I am a lot stronger. Getting stronger on a daily basis. Vacuumed the house the other day. Went down to the basement and brought up the vacuum cleaner and did the whole house, returning the cleaner to the basement. I was tired, but it was a good tired, and I was fully prepared to pay the price. I am driving now, which means I can go shopping. I just have to be really careful to not buy too much because the bags become too heavy. Multiple trips are de rigueur. Things are improving.

The guilt that comes from not being able to do things is almost impossible to come to grips with.

The guilt that comes from receiving the love of friends and relatives is an interesting reality. There should be no guilt there. That is what friends are for. To love you in spite of your shortcomings, or maybe because of them. This journey has shown me an amazing amount of love and support form all sorts of friends and relatives, and some very unexpected sources. You cannot help that you are putting people out in some way. Yes, I know. People do not feel put out. They would not come and support me if they did not feel like it. There is little doubt that you feel the love, the unrestrained need to come and visit and talk, if no other reason than to make sure you are OK and not about to disappear down some abyss. I also realise that a lot of that support is directed at Janet and Devin.

The guilt is still there. I will deal with it. Come to terms with it. Acccept it. Dispel it.

I am getting a lot of offers to take these off my hands. So many people willing to sacrifice themselves to save me. It is enough to make you look for ulterior motives.

I have a request to make of Fetneh. Next time you come over, no Chaussons. We have to avoid a war. Instead, how about one of your delicious delectable and very rare Banana Cream Pies? There are no substitutes. Those who still wish to throw themselves in front of the cholesterol train should make plans to be here. This is not a pie that travels well.

I doubt any part of it will make anywhere near the front door.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha