Getting a Second Opinion

cancer, doctor visits, second opinions No Responses »
Jul 152010

What is it about second opinions that reassures people? I can see circumstances where you may want reassurance for something traumatic. In most cases, I doubt a secon opinion is very helpful.

I am not talking about construction projects, or the installation of a furnace. We moved into our house 11 years ago. Our furnace seemed to have trouble keeping the house warm. The air conditioner that was highly praised by the previous owner was barely useful. Nothing more than an air circulator. I talked with the representatives of about 6 different furnace manufacturers. Like most industries. there are very few actual manufacturers. What looks like a diverse field is dominated by a few companies that market several brands. All claimed to have the best unit on the market and cited one item that distinguished them from the others.

One had an electronic ignition which they claimed was useful in that it was more efficient. Do not need a pilot light. Just saved myself $10 a year. Another had an anti-static drum that would prevent the accumulation of dust on the air intakes. Fantastic feature guaranteed to work for three years at least. Another had a 12volt fan which could stay on for ever circulating the air around the house. Highly useful. I guess. I came away from the exercise more confused than when I went in.

We finally replaced our furnace about three years ago. We hired the same contractor this year to install our central air without going fro a second opinion. We trust the contractor. He did a stellar job the first time, and again now.

One of my cousins visited me recently. One of the first things she asked is whether I was having liver surgery. No, I said, no such plans. She suggested I might want to go to Germany for said operation. It would only cost about $2,000. I should not rely on the opinion of my one doctor here. She understands that we are living with the constraints of universal health care. They often will not perform operations or provide other services to save money. I should not let that hold me back. Germany has wonderful services.

I accused her of having Health Care prejudices. This opened a whole other set of issues which I will not go into, a waste of time.

This advice was given without having any idea about how our system works, or at least the system in this hospital. There is a panel of doctors who look after us. Major decisions are made by the panel, not the individual doctor. This is a truly amazing system. Not only do you get a second opinion, but you get five of them. By the time I was set for surgery, I had four separate opinions. Why go after another?

The situation gets more complicated. We do not appear to understand the why’s and wherefores of cancer. We do know that I do not have liver cancer, but colon cancer in the liver. Same situation in the lungs. I finally understand the meaning of metastasized cancer.

An operation of the liver is a waste of time. The cancer cells are busy in both halves of the liver. Taking one half out, letting the liver regenerate, means that the cancer will just travel from the other half back to the first.

Why in the world would I want to second guess my doctor anyways? What makes me think for a second that I know better than my doctor. Should I go to Germany for the operation, who will look after me post operation? I have an appointment to see my surgeon tomorrow morning. This is 9 months after the operation. We talk and make sure all is right. It is not a long meeting. Am I supposed to after another local surgeon look after my needs following an operation in another country? Does not make sense to me on any level.

We were told that we have the right to a second opinion at any time prior to the operation. We were told to feel free to go to the Mayo Clinic or anywhere else we thought might provide some additional information or help. No one here would hold that against us. After being in this system for a year, researching, reading and contemplating alternatives, I can say that the doctors appreciate it when you know more, when you take the time to educate yourself and take charge of your destiny. At least my doctors do.

I think a second opinion is required because we do not like or trust the first opinion. We are hoping that the bad news is not as bad as it appears to be and want to hear a second voice.

I generally deal with people I trust. I trust my family doctor. We have been together for fifteen years and understand each other. She is a modern medicine woman, dispensing drugs to heal all. Anyone not comfortable with that should seek the advice of a traditional medicine person.

I trust my oncologist and his entourage. I trust my surgeon and her entourage. I am happy with the decisions taken. I will add resources as I see fit, as I can accept them, understand their significance.

Posted by Farokh at 14:04 Tagged with: , , , , ,

The Week That Was - Ended Nov 29

Uncategorized 3 Responses »
Dec 012009

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.

Posted by Farokh at 13:28 Tagged with: , , , , , ,

No Chemo

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Nov 092009

No chemo last week. I now have the pleasure f an extended good week. This makes up for the days H1N1 stole from me.

I went to the blood clinic as usual last Wednesday after the Art Therapy session. Devin had to be at work by 3:00. We decided to give the clinic a try. We wold leave if they were too busy. The process from parking the car, giving blood, and getting back to the car was 20 minutes. This included a chat with the lovely nurse who, it turns out, has breast cancer. We had a long conversation. Very cool.

She left the pin and tubes in my Porta-Cath, just like the previous time. This is truly the best way to give blood.

I picked up Janet at her office the next day and we made our way to the PMH Chem Daycare. As lovely a name for this activity as any. We asked whether there would be a delay or not. Time enough for us to get a cup of something and do whatever else. The gentleman behind the counter let us know that we had about an hour because my drugs were not ready yet.

We went to Starbucks and had coffee (Janet), and tea (me). Took our time, talked and had a great rest. Finally made our way back. A nurse was waiting for us. Turns out my blood cell counts were too low for chemo. More specifically, my white cell count was low. Something to do with my Neutrophil count being too low. No one seemed particularly alarmed in any way. Not a big deal. Happens all the time. Nothing to be done but wait for the count to go back up. Could happen any time. I have been given a reprieve until next week, which is this week since I am writing this on Monday morning.

The chemo schedule had to be changed since we are now out a week. My last session will take place on December 23. Merry Christmas.

The complications that arise from this move are interesting. For starters, I have to take these pills an hour before going in to get the chemo. It really is not a big deal. The pills are tiny. There are seven of them. The pharmacy releases the pills the week of the chemo. I cannot purchase all the pills I need for the remaining chemo sessions. I guess they feel I might overdose on them or something. I have now taken the pills that were due for this session, so we have to get a new prescription.

Next week is going to be a busy week. Seeing the oncologist, and the surgeon, and getting a CT-Scan done to review the State of the Union. The surgeon will probably give the go-ahead for the Avastin treatment. I have to read up on its side effects.

My brother is coming for a visit this Thursday. My sister is coming for the day on Sunday. All good. Looking forward to seeing my brother. He gets to see the baby bottle. I am looking forward to the visits. I think it will help cope with the treatment. I had very few issues last time, mostly tired. But having my family here will help. Specially if Fetneh bakes me a banana cream pie!

I am keeping busy. Driving a lot more. The weekend was very tiring. I don’t think I ate enough, in fact I know I did not. We went to Ginger’s to look at showers fixtures. All the showers we saw have these huge round plates that cover the wall and hold the spigot that turns the water on and off. The ones that have a small discreet plate, done tastefully and with respect to the rest of the room are in the $7000 price range. You read right. Don’t get me wrong, I love a shower as much as the next person, but $7,000 for a shower fixture?

We next went to Elte to look at furniture. Janet wants to ge rid of all our furniture and start over. Elte is huge. They have carpets and furniture. No appliances or anything. They are way too good to carry that sort of pedestrian stuff. We saw a couple of pieces we like. The first was perfect for our living room until you sat on the couch. It has to be the most uncomfortable $11,000 couch on the world. Almost as if they went out of their way to make it so. Not that we are about to shell that sort of money for a couch, but why so uncomfortable?

Cut a long story short, we got home around four, and I was pretty much done in. Took a nap. Made some rice for dinner. Sharon Singer came by for a visit. We had a great time. One thing you have to understand about me is that I talk very fast. I loved watching Sharon as she cocked her head to one side and concentrated really hard to understand what I was saying. My brother says I would have to repeat everything when I was a child because no one understood a word I was saying. So little has changed.

I am getting out more these days. Driving. I am going to see Steve this morning to fix three computers. We cannot afford to be without them, so they have to be fixed and returned right away. He is good about that sort of stuff. Looking forward to seeing him again. This is the best. Life returning to some semblance of normalcy. May sound boring to you, but it is heaven in my books.

Posted by Farokh at 10:07 Tagged with: , , , , , , , , , ,

Coming to terms with sleep

Uncategorized 3 Responses »
Oct 202009

Sunday night had the predictable sleep schedule. There was a slight variation. I drove Janet to work, then went back to bed. We have an appointment with the surgeon, Dr. Kennedy at 3PM for a look see at various things. I still don’t know how they can tell whether the insides are healing or not.

I woke up at 11:30 and was contemplating getting out of bed. It turned out to be 1:30 when I finally rolled out and into the shower. Picked up Janet at 2:30 and went to see Dr. Kennedy. The waiting room was unusually full. One doctor appeared to be running a production line. He was whizzing through his patients.

One patient sat across the room and was coughing and sniffling all the time. No mask. I finally went to the nurses desk and brought this to their attention. They started discussing amongst themselves trying to determine whose patient she was. But nothing was done about it. We have a ways to go in enforcing the rules that we post so freely.

David Woodley, Dr. Kennedy’s assistant came to get us. He has a very firm hand shake. A handshake. We are supposed to avoid those as well. This will all take a while.

Dr. Kennedy called a nurse in to remove all the tapes from my stomach. The main problem has so far been the sutures that did not hold. Dr. Kennedy says it has granulated and needs to be burned off. Out comes the sticks. They are 6 inch Flexible Caustic Applicators with 75% Silver Nitrate ans 25% Potassium Nitrate on its tip. The sticks are kept in a dark pouch. They lose their torture rating if exposed to air.

The tip of the stick is rubbed against the granulated skin on your wound. The skin is granulated which appears to be skin that has formed but has no idea what to do next. It is burned off to allow new skin with half a brain to form and take over. The burning process is repeated every three days until it is totally healed. Dr. Kennedy says it is pretty much healed at this point, just needs a bit of encouragement to close up completely.

My super wound nurse, Annemarie had done this to me once with interesting results. Lots of pain rolling across the stomach. Annemarie says she has not seen my reactions before. Imagine that, me, with a unique reaction to a treatment. The burning hurts again. You might well imagine that burning any part of your skin, healed or otherwise, hurts. Nothing two Tylenol 1′s will not mask.

We also have a discussion about the alien forms in my stomach. Dr Kennedy smiles. She is slowly getting accustomed to my sense of humour. The insides will eventually settle into the right position. May take six months or a year, but eventually, all will settle down and the lumps and growths will disappear.

Is is strange how adaptable we are. The first sight of the alien stomach horrified me. It is is now not even a minor point. Not that I am anxious to share the look with others, but it is not an issue to dwell over. The more important elements of my condition happen every couple of weeks when I get the chemo treatment. It is all relative to whatever could be happening that would be worse.

All is good. Though no Avastin yet. There is no rush for that anyways. It can always be added at a later time when the body has healed a bit more. Avastin may have a negative effect on the sutures that were done inside the body, the ones we cannot see. No rush.

We go home in good spirits.

Leslie is not feeling well. She keeps wearing a mask around the house and is considering moving out until she gets better. I have very mixed feelings about this. I understand why she wants to move out, but it is very nice to have her around. I wish we can make some changes to our house that would accommodate her lifestyle.

I take a nausea pill after supper. This is what things have come down to. Feel bad, take a pill. As Fetneh said to me the other day, what a twist. A person who has never taken so much as a vitamin C now has an apothecary in his bedroom.

A bad night’s sleep. Took the Lorazepam, eyelids weigh down, Word Searches taking longer. Yep time to sleep. Lasted an hour. Woke up, leg jumping, posted to this blog, if only to make Sharon happy, tried to sleep again. Went downstairs, had a snack, took the other half of the L, back to sleep. Awake an hour later, back downstairs for another snack, finally fall asleep at around 4AM.

The thing about these hours, is that it throws your sense of time off. We vacationed in the Yukon one summer. Light 24 hours. There was a dusk and dawn which lasted about an hour collectively. We were having a bar-b-que one night when a neighbour came over and asked what we were up to. Seemed obvious, but his question had to do more with do you have any what time it is? It was midnight and we were just sitting down to dinner.

I am sleeping strange hours. Woke up this morning and thought it was early, except for the fact that it was 11:30AM. Late start to the day which is something I have to get accustomed to. It sort of changes the order of operations. Nothing wrong with that, just have to get accustomed to it.

Kali is thinking of coming over this afternoon. I think we will go for a walk. I need to shower before she gets here.

Posted by Farokh at 13:21 Tagged with: , , , , , ,
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