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.

Last week was bad.

Slept badly in spite of not feeling guilty about it.

A whole bunch of side effects, which we believe to be from Avastin. My skin has felt hot all week. No temperature or nausea or or feeling hot or anything that is usually associated with hot skin. Just very hot skin. Janet keeps kissing my forehead. I am on to her. She is not kissing me out of love, just wants to make sure I do not have temperature. Faker. Though I suppose that is a measure of love.

We finally bought the shower head you keep hearing about. Drove out into the hinterland that is the Greater Toronto Area, a store run by Iranians. This is as fun as it gets. The better part is making our way to an Iranian store called Tavazo to buy Iranian nuts and stuff. The best pistachios are the ones from Iran. There is no argument there. NONE! We bought a bunch of those, and mixed nuts which include a generous helping of Iranian raisins, and dried mulberries.

My father used to eat the raisins to thin his blood. I have no idea if it worked or not, or how much of these things you have to consume, but he swore by them. Not an issue for me, his swearing by them, I love those raisins. Love raisins in general, but those are particularly good. We lived in Iran between 1963 and 1965. I remember going to the country where we were offered fresh mulberries. These are nothing like the ones that fall off trees here. First of all, I remember these trees as being huge. Whether that was a reflection of my short height, I am not sure. The workers would place huge white sheets at the foot of the tree. A bunch would then climb into the tree and start shaking it releasing all the mulberries. These are almost white in colour, and very sticky. And delicious. You had to eat them with a spoon. It was love at first taste.

We buy the fruit here in a dry state. Not as delicious, but a wonderful second best. They tend to dry up, which is easily rectified with a slice of apple added to the dried mulberries. Keep the lot in a plastic for a couple of days, and you get wonderful moist mulberries. Unless you are my brother who appears to like them dry. No understanding people.

Back to me, which is what this is all about.

The past week was marred by periods of extreme exhaustion, poor humour, and a general feeling of being fed up with the whole thing. Judy tells me I have to brace myself for about 18 months of this sort of stuff. Counting the months down to month 19. We have just finished month 1. Sigh.

We went for dinner at Judy and Arlin’s house on Saturday night. I sent most of the time lying on the couch, and we were there for only 2 hours. Sunday was like a breath of fresh air. Not sure how this all happens. Dying one night, up and at them the next morning. But there we were taking a drive to the country to see Ann and Frank who fed us a fabulous lunch and apple pie. Ann is an amazing cook and baker. I drove out there, and more importantly, felt up to driving back. The trip takes between 45 minutes and 1 hour. Not too shabby.

I am seeing Dr. Kennedy, my surgeon, this afternoon. I am expecting a clean bill of health, specially after the positiveness of Dr. Hedley. You can read all about the amazing Dr. Hedley here. She better not say anything about my hair. Yes, it is still all there. Though my scalp is sensitive to the touch, and I am shedding some hair, but no clumps coming out yet. I am still thinking of having a party at my hairdresser’s. I should maybe talk to him before sending out any invitations.

I tested a new bag this weekend. I will reserve that for its own post. It deserves it. Strange technology, this bag thing. Harder than it looks at first sight. Or second.

Talked to a lot of people over the past few days, all of whom are reticent to commenting on this blog. Apparently, some current commentators are just to insightful. But that is the whole point of the comments. Some insight, some humour. No observation is too slight.

I am glad I am doing better as we head into chemo week. I was dreading going into it feeling the way I did on Saturday.

Felling strong and mighty.

Hair mostly intact.

Onward and upwards.

Went to see the oncologist yesterday with mixed results.

The last CT Scan we did was at the end of July, before the full diagnosis, and before the operation, and before the chemo, and just plain before.

Monday’s CT Scan revealed more cancer tumours and activities. This is to be expected. No treatments results in very active active cancer cells taking advantage of our largesse to promote their intent. Here we are, almost three months after the operation with more tumours, not less.

This had surprisingly little effect on me. Dr. Hedley is amazingly re-assuring and positive through all things. He went through checking me out prior to discussing the results of the test. He prodded and probed and was amazed at the excellent condition of my stomach muscles. I really have no way of judging these things, but I am apparently in better shape than we thought.

A CEA blood test was done, the results of which will be available in 10 days. I have discussed this test before, but for those of ailing memory, here is a link with an explanation. It is not a conclusive test, but it does give us an idea of the direction of the healing. We left the good doctor in good humour. He gave me a hug. I mean, what kind of a heartless doctor gives his patient a hug? Told you he was good.

His basic premise is that I am well if I am feeling well. There are good points and bad to this. I was feeling well at the beginning of July in spite of this invasion, until I felt bad. But I tend to agree with him overall. Feeling pretty good, mentally and physically. Getting stronger. Putting on weight to the point where I might have to go on a see-food diet. The general prognosis is is that I am improving and the cancer must be in full retreat. 10 days.

My voice is, as always, the barometer of my health. It is weaker than I would like it to be. But this is the end of chemo week and the start of mighty and strong week.

Addendum

We received some results from the blood test that would lead us to believe that I am doing very well indeed. The tests involved levels of

Test old value new value normal range
ALP 403 149 30 to 120
ALT 67 33 5 to 35
LD 588 257 100 to 190

The normal range is listed below. The information below has been copied from enotes.com. They provide a very comprehensive explanation of what these things are.

Results

Reference ranges vary from laboratory to laboratory and also depend upon the method used. However, normal values are generally framed by the ranges shown below. Values for enzymes are based upon measurement at 37°C.

  • ALT: 5-35 IU/L (values for the elderly may be slightly higher, and values also may be higher in men and in African-Americans).
  • AST: 0-35 IU/L.
  • ALP: 30-120 IU/LALP is higher in children, older adults and pregnant females.
  • GGT: males 2-30 U/L; females 1-24 U/L.
  • LD: 0-4 days old: 290-775 U/L; 4-10 days: 545-2000 U/L; 10 days-24 months:180-430 U/L; 24 months-12 years:110-295 U/L; 12-60 years:100-190 U/L; 60 years: >110-210 U/L.
  • Bilirubin: (Adult, elderly, and child) Total bilirubin:0.1-1.0 mg/dL; indirect bilirubin: 0.2-0.8 mg/dL; direct bilirubin: 0.0-0.3 mg/dL. (Newborn) Total bilirubin: 1-12 mg/dL. Note: critical values for adult: greater than1.2 mg/dL. Critical values for newborn (requiring immediate treatment): greater than 15 mg/dL.
  • Ammonia: 10-70 micrograms per dL (heparinized plasma). Normal values for this test vary widely, depending upon the age of the patient and the type of specimen.
  • Albumin: 3.2-5.4 g/L.

Last Thursday was the start of chemo week. Avastin was added to the mix. Another unknown, and as you all know by now, I am not a big fan if unknowns of this kind.

My brother and his wife left on Monday morning. My sister had come for the day on Sunday and left that same evening. I felt like I was on a natural high on Sunday. We even joked and laughed about my cancer. That was a a first and a very good sign. That people felt comfortable enough to laugh at this thing is way cool.

The last visit from my brother was followed by a huge emotional vacuum. This time was no different.  The high is followed by a very natural low. That was yesterday. The weakness of my voice is a dead giveaway.

Fo’ad drove me to the hospital for my CT-Scan. This is the first one since  the chemo treatments have started. The results should be telling. I am seeing the oncologist on Wednesday, so the wait is short for the results.

I had a pain in my ribcage last night right about where the liver is located. It went away by the morning and came back tonight with what appears to be a vengeance. I took a couple of Tylenol 1s. We will see if it helps. These things take about an hour to kick in.

My nurse Barb came for a visit this morning to see how I am doing. She will visit me every two weeks just to keep tabs on me. It was really nice seeing her. I somehow miss my nurses. You cannot help but want to get rid of them when they visit. Once they are gone, the story changes somewhat. It turns out the visits were nice and reassuring. Someone who looks at you and tells you how well you are doing and actually knows.

This has not been a good week so far. I went to see my supplier of bags and such, Faye. She is very sweet. We are looking at alternative brands. One of them has a locking bag. Makes sense considering my accident of the other night. We ordered samples. I went shopping for food after. Took some pictures.

Came home exhausted. It was not supposed to be this way. This is usually the first day of recovery where I show signs of strength, vim and vigor. Yet here I am totally exhausted and going to bed after I post this item. Not fair.

Tomorrow is a big day. I get to paint my picture of anger at the Art Therapy session. I already know what I am going to do. A no brainer when you have time to think. Just hope I can do my idea justice. You will see the results in the next couple of days.

And of course the oncologist.

Big day tomorrow

This has been a recurring theme. It is fitting that it should be addressed in its very own post. What honour.

Life has changed to the point that the future has little meaning. People are always telling me that we do not know when we are going to die. This should make it easier to survive my plight. It is true that our death is pretty much out of our hands, unless we are going for the Darwin Awards. Short of that we really have no idea when the idea is coming.

What a privilege to know that your life will be shortened by whatever the number of years. Imagine my disappointment if it is not. Going through this journey and reconciling oneself to the inevitability of a shortened life only to find it will last longer than expected. How to deal with all that extra time? Won’t I live with the expectation of impending doom past a certain point?

I am not sure what the future has in hand. How long my life will be, and I do not dwell on the subject very often. The thoughts do linger though. I have learned one thing through this very short journey, everyone is different and no two conditions are the same. I hear stories all the time about people surviving beyond the expected time frame. Everyone is careful not to talk about the people who did not, of course. Not one person has said, “you have what? Oh my God, I just heard of a guy just like that, he was gone in two years!”

No one would ever say that. Not even as a joke. People are very sensitive to one’s plight and say whatever they say in order t encourage and make the condition appear to be less dire that it appears. Much appreciated. Have I told you lately about the bag that is taped to my stomach?

People mean well and comments are taken at face value. The conversations are always appreciated. Each and everyone contain glimmers of wisdom and thought provoking statements that I would not miss for the world.

One of the comments most mentioned is the one that one is now forced to live on a day to day basis. There is certainly a measure of truth in that. One of the reasons is that you have little energy to think about anything past a reasonable amount of time, say Monday when you are going for a very telling CT-Scan. But you do not tend to dwell on things too far into the future. Your condition in some ways forces you to remain very much in the present, even during the good week in between treatments.

An unclear future , either in length or any other measure you care to discuss can get very depressing. There is a distinct danger of wallowing in self pity. Yet at some point, you have to start thinking about what you are going to do with yourself. I do have some time in front of me. The chemo treatments will end at some point, and I will recover. Leaving thoughts of what to do with oneself to the last minute is too much procrastination, even for me.

Your thought and comments are appreciated.

There will be another post on this topic. It is inevitable. See, already thinking past today.

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Art Therapy

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