Recently in Family Category

March 3, 2010 1:29 PM

Letter from my brother-in-law

This is the doctor that did some consulting during my early treatment. He and my sister visited me during my week in the hospital; it was great. Here's a picture of him on the right

Hi Ali,

Let me first deal with the practical and then come to the abstract.

Radiation may slow down the stuff in the chest but you are right, the cost is burning dysesthesia and possibly worsening swallowing ability.  If you take this you may want to consider a feeding tube which would have to be placed surgically because you need your strength. Chemo is the answer as it is systemic (disease and treatment); but you know the cost, and it is trial and error ( a calculated guess)  to find one that has some effect on the tumor. (It is something I am reconsidering given the help I now have.)

ENT is to inject the vocal cord with a teflon substance to bring it back to the midline so that the other vocal cord can work better and your speech will be better.  Take care, because your nerve which is likely damaged by tumor recurrence and is the likely cause of your poor voice, controls also the swallowing reflex in the neck, and  if you drink thin liquids this can lead to aspiration if you are not careful.  The ENT procedure is simply to help improve your voice but it has no effect on the tumor.

And now the abstract:

March 2, 2010 1:13 PM

Letter from my sister

Keep in mind that until November I would hear from this sister (not the one that most people know) about once a month. I hadn't heard from her since the fall for some reason. And as you know, the expression of raw emotion doesn't happen in my family, so this is a significant departure from the norm.

This (authorized) letter is so beautiful to me. I knew she loved me, but this...

Hi Ali,

I came to the computer to check the time because I needed to replace the batteries in a clock and set the time.  That is when I saw that you had written.  Immediately I had a sick feeling in my stomach and was overtaken by panic and fear but knew I had to open the e-mail.

I am at a loss for words.  My stomach is killing me and I am feeling queasy and shaking with tears in my eyes. (forgive me for complaining about pain.  I shouldn't considering what you are going through).  I had no idea.  I could have called you and e-mailed to find out, but I was afraid.  I kept hoping and praying that everything was going to be all right and that no news is good news.  What a coward I am.

I feel better knowing that you are not alone in your time of need.  I knew you had good friends and in a way I did not worry as much, but nevertheless I always did.  I am not very good at expressing my thoughts and feelings.   Forget about proper grammar, I think you know what I am trying to say.

If I could change your situation and makes things better (eradicating this cancer from your body), I would have done it the first time I learned of your diagnosis.

I have not given up.  I will continue to say prayers.  I do hope you are not suffering too much.

Ali, please let me know what I can do to help.

I very rarely use the word love because I feel that it is so overused without any thought to the true meaning.  Please know that I love you very much (emphasis mine) and please let me know if there is anything I can do to help.

The tears are flowing freely now.

Love always,

Allison
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February 24, 2010 12:18 PM

Cancer marches on

The Friday before last I paid a visit to the palliative care people (PCU) at the MGH. They put me on the regime I mentioned, and in terms of pain it worked perfectly for three whole days. I haven't felt that great since the summer. Last Monday morning (the 15th), they called and asked about constipation. I still hadn't gone in about a week, so we decided that an enema was in order. 4, actually. That afternoon, I bought them and took the first of what was to be four daily enemas. Within 30 minutes, of course, my vacation from suffering was over, and I was in pain from 3:45 pm to 11 am the next day, just in time for the CT scan that the PCU had scheduled for me to see if there wasn't anything else in the abdomen causing me discomfort.

I felt fine again, because my afternoons are typically good. After the scan I sought out the PCU and they suggested I drink Peg-Lyte every day. I started that evening, and naturally didn't feel great. It became so bad, though, that I didn't sleep that evening. Suj (who I was supposed to have lunch with that day) took me to the hospital at noon Wednesday, and when I mentioned my scan from the previous day, he got me the preliminary results within minutes.

Long story short: on January 28, there were a lot of lymph nodes infected with cancer, but no organs. By February 16, my pancreas had a huge mass in it. 5.6 by 4.2 cm. Not even three weeks. When my oncologist found out about it, he was floored. While this is very bad, but does not change my plans in any significant way. I have to get a second opinion from some other docs at another hospital (which could positively affect my financing for a certain off-label treatment I haven't mentioned here yet). 

December 31, 2008 8:51 AM

I should probably do a year-end update, but...

I don't really feel like it yet. It'll probably happen a bit later if I feel like it again. I'll just give a cancer update here. The bad news is that I will be able to attend a New Year's party tonight. You'll see why it's bad news.

I started the new chemo on October 22. It was...all right. This time around it was only marginally better than typical. The big difference with this protocol is that it also gives you a weird sensitivity to cold. You don't necessarily feel colder, but being outside in less than 20-degree weather makes the insides of your nostrils, face and under the fingernails hurt. For five days I couldn't even go into the fridge without special gloves let alone go outside. Of course, I wouldn't necessarily want to go outside anyway since I felt like shit anyway.

In addition to the liquid chemotherapy infusion, I took some disgusting pills every day. They tasted like shit, and made any liquid I took them with taste just as bad. It was a struggle to swallow eight of them a day, especially during the first five days when my senses of taste, smell and nausea were elevated. At least the place wasn't the vomitorium it usually is. Just a little less than normal.

I was to have another treatment on November 12, but as usual, I was neutropenic. I didn't have to wait a whole week. I had to wait TWO whole weeks. Two weeks. And it all started again on November 26th. I have been working with a pivot nurse that has really been able to help me out in terms of symptoms.She determined that I had "anticipatory nausea", which basically means that part of the nausea that I have was all in my head. I would dread it beforehand and cause it to happen. For example, one of the anti-puke pills they give you is called Zofran. When I am on treatment, I can't even say that name without gagging. To combat this, I was given Ativan. (Many of you know seem to know what this is. I am curious as to why.) It seemed to help, as this treatment was the "best poison session I've had" since the surgery. I only launched about 7-8 times, although the cold sensitivity seemed to linger.

December 26, 2007 9:31 AM

Season's Greetings

And happy tidings. Rose and I are in Brockville right now, and we will be returning to Montreal later today. I can't say that I am looking forward to it. Let's compare the two places.

BrockvilleMontreal
  • A nice, warm, clean, familiar house with plenty of space.
  • Two people that enjoy taking care of things like ironing clothes.
  • Good food on a regular basis.
  • Relaxation and distance from my problems, time to heal and deal.
  • Proximity to my brother, my favourite relative.
  • Proximity to my sister, whose house is like a mansion.
  • Proximity to my nieces and nephews, some of which I know could benefit from my presence.
  • Access to a car if I get insurance.
  • Stores open until six on the weekends instead of five. That makes a big difference.
  • Satellite TV
  • A small, dirty, crappy apartment whose kitchen and living room combined are the size of my 8-year-old niece's bedroom. I am not kidding.
  • Obligations and responsibilities, not all of which I feel I can handle.
  • A sense of futility and frustration.
  • Having to walk around and deal with the metro and bus system, which is normally pretty good, but still.
  • A more complicated way of living.
  • Unfriendly people.

October 8, 2007 10:45 AM

Pics

Here are some pictures that I scanned from my trip this weekend to Brockville. Enjoy.

3 months old3 months old: Restored1 year old
JaredHigh School GraduationPosing

August 11, 2007 10:14 AM

Petunia is NOT ready for her closeup

The following pictures were taken in a park on Bellechasse.

Is it wrong for me to be so fascinated by how fat this kid is? He's only about 4 or 5 and was in the same park, next to us.

May 26, 2007 2:39 AM

They grow up so FAST, don't they?

Petunia, Rose's daughter, is 7. But she hasn't been acting much like a seven-year-old lately.

She's a pretty bright kid. She's near the top of her class of brighter-than-average kids. Before last fall, when she learned to read, she said, "When I learn to read, I'll be free!" which prided up her mother fiercely. Reading and learning are a number one priority for Rose, so no effort has been spared to give her access to all of this. Every week, Petunia's reading improved until a couple of months ago.

She started acting very blasé and bored about just about everything except computer games. Nothing interested her. Word games became uninteresting. Reading? Forget that. Her reading skills seemed to be declining rather than improving. She had a bigger and bigger attitude in general. She was 14, and now we have figured out why.

Petunia had a best friend, a girl from England called Jackie. They used to do everything together. They are both in Grade 1, but somehow, perhaps through an older sibling, Jackie ended up hanging out with some Grade 6 girls about 12 years old. Jackie then brought Petunia into the group, however, she had to do certain things in order to be accepted. These things included showing attitude, requesting more adult clothing, doing silly things at her expense and for their amusement and worst of all, playing dumb. I barely understand that last one when they're 12 years old. I cannot figure it out for a 7-year-old other than as a way to gain acceptance to some elite group.

Luckily, her father figured things out, explainmed to Petunia that she was being used and made fun of and that perhaps a better friend could be found. Many other girls would have been lost without their best. They often cling to these destructive relationships because anything is better than being alone. And of course, these things often enough continue into adulthood. Thankfully, Petunia recovered quickly and found another girl that she gets along with so well that they call each other "cousin".

Isn't it crazy that this should even happen, though? What the hell is wrong with these older girls? And Jackie? Seriously, this could have been a lot worse than it was; it seems that 75% of women and girls have screwed-up identity and self-esteem issues. This is one reason why.

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