So I am preparing to leave Israel and go back to London.
There is a fair amount of confusion between my parents about whether I am or am not insured in the States and whether, if the genetic testing comes back positive, I need to be tested at MD Anderson. So, I am potentially facing the prospect of having to decide whether to head to Houston every x months to be poked by American doctors, or whether it would be sufficient to do it in London (or wherever). I think I am arguing that if a doctor knows what they are looking for, then where the test is done becomes irrelevant. But my father swears differently, and says that his tests back in June say, in big letters on them "Patient wanted to know he was clear for cancer. And he is". Sadly, this turned out to be bullshit.
Anyhoos, enough about me. My dad starts chemo in about 6 hours (7am Houston time). I am pretty sure he is terrified, although he talks a lot of fighting talk on the phone. My mother says that I should stay in London for a little while longer than I first thought, as I can be the most use just after his chemo, when he is feeling shitty. He is supposed to be treated every two weeks. Clearly, though, the Israelis are not going to be treating him on a Saturday, so I am thinking his next treatment will be on Sunday 18th (which is a weekday. Don't ask). So I will kick around in London and hope for the best until then.
Funny thing is, I haven't heard from my brothers. I hope they are ok. If they read this, perchance, maybe they would like to give me a call? I miss them.
To sum up, I am still on the short-list for cancer of the everything and going home to think about my dad in peace. My mother finally agrees with us that, if it is the case that he is not going to be with us for all that long, he wants me with him. My dad and I just gave her the you-finally-got-with-the-programme look.
Oooh, oooh. Before I go, a list of lovely screening options for the various forms of cancer:
- Breat Cancer: Mammogram
- Ovarian: Pelvic Exam (which doesn't really tell anyone anything), Transvaginal ultrasound (which is not nice), CA-125 Assay (hoorah for blood tests)
- Pancreatic: Currently no standard screening exists although they are recommending Endoscopic Ultrasound coupled with Endoscopic retrograde cholangiopancreatography (ERCP) (tubes down my throat. Yummy).
Is it just me, or is cancer starting to sound good?
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Saturday, 3 October 2009
Friday, 2 October 2009
whose cancer is this, anyway?
Speaking to my parents yesterday, I got only one clear indication: They are worried about me. Sounds weird? Well, here's why.
Apparently, there is quite a high chance that my father has a specific genetic predisposition to pancreatic cancer. And breat cancer. And ovarian cancer. He is being tested today to find out if he has this mutation. If he does, then there is a 50% chance that his children do as well. However, I have managed to pick up every single one of his genes and seemingly none from my mother, so the chances are pretty good that I have it, if he does. And so do my brothers. This is more of a problem for me, though, obviously, as they don't have breasts or ovaries.
So, in a couple of weeks when those test results come in, I might have to be tested myself (and don't start me on how much I am going to have to deal with having blood tests), and, if the test is positive, I am going to have to be screened for all these cancers every few months for the rest of my life.
My parents are worried about the inconvenience. I am worried about my potentially shortened lifespan and the prospect of having cancer coming out of every orifice. Nice.
I have a very poor record when it comes to considering my own mortality. I truly think I am going to die on airplanes and I think about death a lot. So the idea that I might be halfway through my life scares me shitless. Yet another reason to run off, get married and start having sprogs as quickly as possible. Only not really.
Yeah, but it's all contingent on him having this mutation. Which everyone actually thinks he does this time. The reason is that, if he does have it, it makes the cancer much easier to treat, because they know what type it is and what to target. So, good for him, not so good for the younger generation.
I'm feeling mildly cynical today, can you tell?
In other news, I have taken my grandmother's advice to not take anyone's advice and have booked flights back to London for the very immediate future. I want to be back in Israel when my parents arrive, and I reckon I am going to be bouncing back and forth for a while. So, London on Saturday night, where I will stay for 10 days. Then we will think onward. Life, shouldn't stop, they say, but until my personal view of my father's prognosis improves, I am not taking any chances. Plus, I hear that chemo isn't nice.
Finally, I want to thank all the people who have dropped me messages via any means this week. People that I have not spoken to in years have come out of the woodwork in support. Funnily enough, this is not like my attitude on birthdays. I disabled my facebook wall every year on my birthday, because I think that if people want to wish me a happy birthday, they should make an effort. I think this is different because people genuinely care, and also, because I have received several very thoughtful and heartfelt messages. So thank you. Thanks for being supportive. Thanks for making me smile. Thanks for showing me that people out there care and that there is a point in my writing all of this (other than for informational purposes anyway). You guys rock.
Apparently, there is quite a high chance that my father has a specific genetic predisposition to pancreatic cancer. And breat cancer. And ovarian cancer. He is being tested today to find out if he has this mutation. If he does, then there is a 50% chance that his children do as well. However, I have managed to pick up every single one of his genes and seemingly none from my mother, so the chances are pretty good that I have it, if he does. And so do my brothers. This is more of a problem for me, though, obviously, as they don't have breasts or ovaries.
So, in a couple of weeks when those test results come in, I might have to be tested myself (and don't start me on how much I am going to have to deal with having blood tests), and, if the test is positive, I am going to have to be screened for all these cancers every few months for the rest of my life.
My parents are worried about the inconvenience. I am worried about my potentially shortened lifespan and the prospect of having cancer coming out of every orifice. Nice.
I have a very poor record when it comes to considering my own mortality. I truly think I am going to die on airplanes and I think about death a lot. So the idea that I might be halfway through my life scares me shitless. Yet another reason to run off, get married and start having sprogs as quickly as possible. Only not really.
Yeah, but it's all contingent on him having this mutation. Which everyone actually thinks he does this time. The reason is that, if he does have it, it makes the cancer much easier to treat, because they know what type it is and what to target. So, good for him, not so good for the younger generation.
I'm feeling mildly cynical today, can you tell?
In other news, I have taken my grandmother's advice to not take anyone's advice and have booked flights back to London for the very immediate future. I want to be back in Israel when my parents arrive, and I reckon I am going to be bouncing back and forth for a while. So, London on Saturday night, where I will stay for 10 days. Then we will think onward. Life, shouldn't stop, they say, but until my personal view of my father's prognosis improves, I am not taking any chances. Plus, I hear that chemo isn't nice.
Finally, I want to thank all the people who have dropped me messages via any means this week. People that I have not spoken to in years have come out of the woodwork in support. Funnily enough, this is not like my attitude on birthdays. I disabled my facebook wall every year on my birthday, because I think that if people want to wish me a happy birthday, they should make an effort. I think this is different because people genuinely care, and also, because I have received several very thoughtful and heartfelt messages. So thank you. Thanks for being supportive. Thanks for making me smile. Thanks for showing me that people out there care and that there is a point in my writing all of this (other than for informational purposes anyway). You guys rock.
Wednesday, 30 September 2009
There's a spot
My brother called. I have been waiting up for him. He has been in the meeting with my parents and the oncologist for the last 2 1/2 hours or so. He had to leave early to catch a plane home.
So, it's pretty grim. My father had an MRI yesterday "just to check" that there were no spots on his liver, and they found one. One. Usually there are loads, which makes it officially stage 4, inoperable and we are fucked. With one, they can't tell yet. PET scan tomorrow to confirm, if they even can confirm anything. So it might be Stage 4, or not. And the relevant question is now "It took them this long to figure it out!?"
My brother says that my parents don't believe that the spot is cancerous, even though the doctor says that there is a 90% chance that it is. However, so far, this entire thing has been atypical, and not in a good way. If it's stage 4, they won't operate, because it could "anger" the cancer and make it much more aggresive. Personally, I don't care about making it angry. Frankly, I'm angry.
They will be staying in Houston for the next two weeks, in any case, because they want to start him on chemo early next week. I am wondering what the damn point is, if they don't want to operate on it.
So we may well be flying out of here. At least I will have a better internet connection, as I am poaching internet from the flat 3 floors beneath us at the moment.
Now what? My brother says that they will probably be unwilling to operate for at least 8 months. So, as our doctor friend claims, does that mean that we are supposed to go back to normal, just live our lives? Am I supposed to go back to London, fiddle around in the theatre and hope for the best? Or could I possibly be squandering any time that I have remaining with my father? Is this not the time that people later wish that they had had with their parents? I have many things that are unresolved with my father and frankly, I am not entirely sure that we want to resolve them now. It's too soon. He's supposed to have 10 months to decide whether to come to my wedding, and then several more years to figure out his relationship to any potential children we might have. We have never talked about god, or about the damned money, or about what the fuck I am going to do with my life. And I'm not sure we can do it all now.
So now what? Does everything stop while we hold our breaths and pray in vain? Or do I trust that tomorrow will be another day and pretend that today is normal?
Fuck normal.
So, it's pretty grim. My father had an MRI yesterday "just to check" that there were no spots on his liver, and they found one. One. Usually there are loads, which makes it officially stage 4, inoperable and we are fucked. With one, they can't tell yet. PET scan tomorrow to confirm, if they even can confirm anything. So it might be Stage 4, or not. And the relevant question is now "It took them this long to figure it out!?"
My brother says that my parents don't believe that the spot is cancerous, even though the doctor says that there is a 90% chance that it is. However, so far, this entire thing has been atypical, and not in a good way. If it's stage 4, they won't operate, because it could "anger" the cancer and make it much more aggresive. Personally, I don't care about making it angry. Frankly, I'm angry.
They will be staying in Houston for the next two weeks, in any case, because they want to start him on chemo early next week. I am wondering what the damn point is, if they don't want to operate on it.
So we may well be flying out of here. At least I will have a better internet connection, as I am poaching internet from the flat 3 floors beneath us at the moment.
Now what? My brother says that they will probably be unwilling to operate for at least 8 months. So, as our doctor friend claims, does that mean that we are supposed to go back to normal, just live our lives? Am I supposed to go back to London, fiddle around in the theatre and hope for the best? Or could I possibly be squandering any time that I have remaining with my father? Is this not the time that people later wish that they had had with their parents? I have many things that are unresolved with my father and frankly, I am not entirely sure that we want to resolve them now. It's too soon. He's supposed to have 10 months to decide whether to come to my wedding, and then several more years to figure out his relationship to any potential children we might have. We have never talked about god, or about the damned money, or about what the fuck I am going to do with my life. And I'm not sure we can do it all now.
So now what? Does everything stop while we hold our breaths and pray in vain? Or do I trust that tomorrow will be another day and pretend that today is normal?
Fuck normal.
"I don't even have cancer"
My father is due to meet with the oncologist today. Last night he had another MRI. They are worried that the cancer has spread to his liver, so they just want to check that. Also, my parents are pushing for it to all be done as quickly as possible, so that there cannot be any reason that he can't start treatment as soon as possible.
In the meanwhile, he is in denial. He told my grandmother yesterday that it's all a mistake, the doctors don't know what they are on about and that they've got it wrong. This is confusing her. My mother says that it's ok to let them confuse each other. He's seems to be going through Kubler-Ross in a weird order, but that's fine. I find it all very weird.
I have been scaring myself with internet statistics today, which I am going to stop doing because it makes me want to drop everything and just spend 24/7 with him. I don't know if it's a good or a bad thing that I am thinking that there are now many things that I might have to do this year or not get to do at all. It's scary.
I have ordered my brother to call me at any hour tonight, as soon as they know what they are going to do for treatment.
Also, my grandmother has had a steady stream of visitors since the holiday ended, regardless of whether she wants them or not. I find this intrusive, especially when they are quite happy to say "even if you don't want company, I'm coming over". Great. So she needs to play the hostess and keep everyone else amused, when all she wants to do is watch TV and drink lots of tea. Also, it is beginning to feel very much like a wake, which this blatently isn't, and I am getting annoyed at the thought that people are coming to sit with her for their own selfish, albeit well-meaning, reasons.
Tired of waiting now. Please make something happen. 12 hours until we know something. In the meanwhile, I am going to my other grandparents to help build a sukkah. I have never been in Israel during these holidays. Maybe I will learn something.
In the meanwhile, he is in denial. He told my grandmother yesterday that it's all a mistake, the doctors don't know what they are on about and that they've got it wrong. This is confusing her. My mother says that it's ok to let them confuse each other. He's seems to be going through Kubler-Ross in a weird order, but that's fine. I find it all very weird.
I have been scaring myself with internet statistics today, which I am going to stop doing because it makes me want to drop everything and just spend 24/7 with him. I don't know if it's a good or a bad thing that I am thinking that there are now many things that I might have to do this year or not get to do at all. It's scary.
I have ordered my brother to call me at any hour tonight, as soon as they know what they are going to do for treatment.
Also, my grandmother has had a steady stream of visitors since the holiday ended, regardless of whether she wants them or not. I find this intrusive, especially when they are quite happy to say "even if you don't want company, I'm coming over". Great. So she needs to play the hostess and keep everyone else amused, when all she wants to do is watch TV and drink lots of tea. Also, it is beginning to feel very much like a wake, which this blatently isn't, and I am getting annoyed at the thought that people are coming to sit with her for their own selfish, albeit well-meaning, reasons.
Tired of waiting now. Please make something happen. 12 hours until we know something. In the meanwhile, I am going to my other grandparents to help build a sukkah. I have never been in Israel during these holidays. Maybe I will learn something.
Friday, 25 September 2009
Journey starts here
I am starting this blog because it is important for me to write stuff down as it comes. I have a feeling these are going to be a tough few months. A friend a few days ago commented "This seems to be many people's annus horribilis." Fair enough.
The gist is that my father has just been diagnosed with pancreatic cancer. He has been having problems in that area for a while now and had scans done in June and then in August. He has a condition called pancreatic divisium, which is completely harmless. Except when it isn't. The point is that the doctors thought that it was chronic pancreatitis, except one doctor, with whom the whole thing didn't sit right. So he talked to another doctor. An oncologist. And he looked at the scans and said "I think I see something here". So my parents trekked back to Houston, with me in tow this time, and yesterday he had another endoscopy to take a biopsy.
The doctor was slightly shocked. My father is in the completely wrong demographic for this (except for being in the same age bracket as Patrick Swayze). He is young, healthy, strong, and so there is a belief somewhere that he has a good chance. Problem is that, worldwide, pancreatic cancer has a survival rate of 5%. At MD Anderson, the cancer hospital, these odds are 27%, hence the title of the blog. My brother says "that's 27% of crap", but it's what we have to hang on to right now.
I have been supporting my mother and my father over the last couple of days. Badly. I have gone and caught a cold (I blame the air conditioning in this stupid country). However, I think that my next job is going to be going to Israel to bring over my grandmother, who is blissfully ignorant right now. It's going to be a relief not to have to lie to her, but I don't envy her future position in any way.
In any case, this is a blog to chart our progress through treatment (of which we know nothing right now) through the weirdness and to keep friends updated as to what's going on, in case anyone cares. It sounds like the treatment will take six months, although we really don't know right now. Some of this blog will be medical jargon (as far as I understand it), some of it will be just thoughts.
I'm OK, although I am not really sleeping and I feel like I am jet-lagged all the time. In the meanwhile, I have a show that I am supposed to be running. Luckily, I trust my team to get on with it. I know that I was looking to take a break, but this was not really what I had in mind!
The gist is that my father has just been diagnosed with pancreatic cancer. He has been having problems in that area for a while now and had scans done in June and then in August. He has a condition called pancreatic divisium, which is completely harmless. Except when it isn't. The point is that the doctors thought that it was chronic pancreatitis, except one doctor, with whom the whole thing didn't sit right. So he talked to another doctor. An oncologist. And he looked at the scans and said "I think I see something here". So my parents trekked back to Houston, with me in tow this time, and yesterday he had another endoscopy to take a biopsy.
The doctor was slightly shocked. My father is in the completely wrong demographic for this (except for being in the same age bracket as Patrick Swayze). He is young, healthy, strong, and so there is a belief somewhere that he has a good chance. Problem is that, worldwide, pancreatic cancer has a survival rate of 5%. At MD Anderson, the cancer hospital, these odds are 27%, hence the title of the blog. My brother says "that's 27% of crap", but it's what we have to hang on to right now.
I have been supporting my mother and my father over the last couple of days. Badly. I have gone and caught a cold (I blame the air conditioning in this stupid country). However, I think that my next job is going to be going to Israel to bring over my grandmother, who is blissfully ignorant right now. It's going to be a relief not to have to lie to her, but I don't envy her future position in any way.
In any case, this is a blog to chart our progress through treatment (of which we know nothing right now) through the weirdness and to keep friends updated as to what's going on, in case anyone cares. It sounds like the treatment will take six months, although we really don't know right now. Some of this blog will be medical jargon (as far as I understand it), some of it will be just thoughts.
I'm OK, although I am not really sleeping and I feel like I am jet-lagged all the time. In the meanwhile, I have a show that I am supposed to be running. Luckily, I trust my team to get on with it. I know that I was looking to take a break, but this was not really what I had in mind!
Subscribe to:
Posts (Atom)