So -
I've had my PET Scan. I've even had my doctor's appointment for the results.
My options were 2:
1. - Bad results and then change of therapy and the dreaded radiation.
2. - Good results and continuing with 4 more sets of the same chemo as so far. 8 more meetings every 2 weeks...
Well, the results turned up to be good for me after all.
I've been seriously expecting other news. I can still feel one of the glands in my neck - and indeed - this one gland is still slightly active but because it is shrinking it has been decided to take the positive course of treatment.
YESSSSSS!
I'm not getting radiation.
Not yet, anyway.
Tuesday 25 May I start the second part of my Research Treatment and I hope to be proud to say in 4 months time that I am a living proof that it is possible to treat Hodgekin's lymphoma without radiation.
Saturday, May 22, 2010
The influences of the EU on our medical care
Although I may have my objections to the participation of the EU in matters of the personal space of its citizens - I must say that the power of the EU to support medical studies to advance the level of care offered to its citizens is a thing I'm glad to be benefitting of:
You may (or may not yet) know that I am taking part in a EU study that has the intention of eliminating Radiation as part of the treatment for stage 1-2 Hodgekin's Lymphoma.
The current standard treatment worldwide consists of both ABVD Chemotherapy and radiation therapy.
For my stage — 2B - The standard course of treatments is of 4 sets of chemo and radiation.
The research is trying to show the possibility of curing without the use of the radiation, which has very bad influences on the body for the long term, and can increase the risks of other diseases or other types of cancer in the years to come (in other words — not the best thing to be getting into your body).
This is done by splitting the participants into 2 groups - Favorable (type A of the stage) and Unfavorable (type B of the stage - me included). Within each group, there is a randomization process into 2 sub-groups - those that get the standard treatment (chemo+radiation) and those that get the trial treatment.
All participants of the research have an additional PET Scan after the first 2 sets of chemo (4 actual treatments) to monitor the effectiveness of the chemo so far.
If the results of the PET are positive, which means the following (for my group of unfavorable patients):
Group 1 (Standard treatment): no change in treatment whatever the results are.
Group 2 (Study group):
Positive (existence of active cancer cells): change of the treatment into BEACOPP Chemotherapy with radiation therapy.
Negative (no cancer activity): continue with additional 4 sets of ABVD Chemotherapy with no radiation - which is the purpose of the study.
===================
Now to my reality:
So far I've completed 2 sets of ABVD (4 treatments in total, every 2 weeks since 30 March).
Last chemo treatment was on 11 May.
within the research i've been blessed to be 'randomized' into group 2 (study) with the possibility of radiation free treatment)
On 20 May I had my PET scan.
My doctor didn't think it would be fair for me to go into the long weekend (holiday on monday) without knowing the results that may change the course of treatment for me and are so important for the future of my battle with cancer - arranged for us to have the meeting to go through the results on Friday, 21 May (to my readers in other places in the world, namely in Israel - It is possible to get the results of the PET scan within 24 hours. the results are available in the computer immediately. there is absolutely NO REASON in the world why it should take 2 whole weeks of terrible waiting {those who have ever waited for such results would know what I mean} to get the results analyzed and reported to you — good or bad. be sure to insist on your right to know.)
And yes - 21 May was yesterday! So you might wonder what the results are?
ahhh -
stay tuned :-)
You may (or may not yet) know that I am taking part in a EU study that has the intention of eliminating Radiation as part of the treatment for stage 1-2 Hodgekin's Lymphoma.
The current standard treatment worldwide consists of both ABVD Chemotherapy and radiation therapy.
For my stage — 2B - The standard course of treatments is of 4 sets of chemo and radiation.
The research is trying to show the possibility of curing without the use of the radiation, which has very bad influences on the body for the long term, and can increase the risks of other diseases or other types of cancer in the years to come (in other words — not the best thing to be getting into your body).
This is done by splitting the participants into 2 groups - Favorable (type A of the stage) and Unfavorable (type B of the stage - me included). Within each group, there is a randomization process into 2 sub-groups - those that get the standard treatment (chemo+radiation) and those that get the trial treatment.
All participants of the research have an additional PET Scan after the first 2 sets of chemo (4 actual treatments) to monitor the effectiveness of the chemo so far.
If the results of the PET are positive, which means the following (for my group of unfavorable patients):
Group 1 (Standard treatment): no change in treatment whatever the results are.
Group 2 (Study group):
Positive (existence of active cancer cells): change of the treatment into BEACOPP Chemotherapy with radiation therapy.
Negative (no cancer activity): continue with additional 4 sets of ABVD Chemotherapy with no radiation - which is the purpose of the study.
===================
Now to my reality:
So far I've completed 2 sets of ABVD (4 treatments in total, every 2 weeks since 30 March).
Last chemo treatment was on 11 May.
within the research i've been blessed to be 'randomized' into group 2 (study) with the possibility of radiation free treatment)
On 20 May I had my PET scan.
My doctor didn't think it would be fair for me to go into the long weekend (holiday on monday) without knowing the results that may change the course of treatment for me and are so important for the future of my battle with cancer - arranged for us to have the meeting to go through the results on Friday, 21 May (to my readers in other places in the world, namely in Israel - It is possible to get the results of the PET scan within 24 hours. the results are available in the computer immediately. there is absolutely NO REASON in the world why it should take 2 whole weeks of terrible waiting {those who have ever waited for such results would know what I mean} to get the results analyzed and reported to you — good or bad. be sure to insist on your right to know.)
And yes - 21 May was yesterday! So you might wonder what the results are?
ahhh -
stay tuned :-)
Tuesday, May 4, 2010
My parents are losing the plot
OK - Before I start, I'll make clear that my parents are divorced for some 37 years and have absolutely no contact with each other.
Let's start with my father —
He worries senseless.
The result - he went to a rabbi ('mekubal' of the sort) and he's getting me my own personal amulet, with blessing and all. Yippee!
Now - he apologized for doing this without consulting with me and I promised I will wear the amulet. so this is not the problem (I know he's worried, and this is his way of doing whatever he can to save my life - and I respect and appreciate this) - the problem is, that the rabbi said that because I'm married to a goy (oy oy oy) - it would be very helpful (to say the least) if I could observe at least one symbolic mitzvah and behave like the good Jewish girl that I am (ROFLOL - the mere thought) - the rabbi suggested to light candles on Friday night. I say - I need help finding a mitzvah that doesn't involve mentioning the name of the lord in vein.
I thought of (quietly) observing the procreation thing - it's fun and if done properly can count as a great mitzvah. the downside would be a baby...
My mom suggested to promise not to drive on saturday — made easy by not having the means or the know-how of driving.
Anyway - My father is coming over in 3 weeks and I'll discuss it with him then (how not to put me in an awkward situation, thank you very much!)
Those who know me would notice that I chose not to explode to the idea that my recovery potentially being held back because of my marriage to a goy (oy oy oy) — I know it is something rabbis say.
I also know what my father is going through (my brother told me in secret) and if this is going to help him sleep at night - I can wear the amulet and pretend I didn't notice the hints made by the rabbi to the quality of my choices.
My mother on the other hand -
Not only she thinks my father is a darling for getting me this amulet - she also thinks that it might be a good idea to slightly change my name... maybe add a letter or two... or add a name... WTF?!
Has the world gone mad?
She gave me a perfectly good name which is MINE.
It is who I am for the last 39 years. It should be at least as good for those to come.
I'm going to meditate on "how to manage parents of a cancer patient".
I give here a public promise - I will NEVER read "Tehilim" nor will I carry such a book within my belongings (I have the terrible feeling this is something that is going to be next).
God bless my dear parents and save them from harming themselves or others in their immediate surroundings.
Amen.
Let's start with my father —
He worries senseless.
The result - he went to a rabbi ('mekubal' of the sort) and he's getting me my own personal amulet, with blessing and all. Yippee!
Now - he apologized for doing this without consulting with me and I promised I will wear the amulet. so this is not the problem (I know he's worried, and this is his way of doing whatever he can to save my life - and I respect and appreciate this) - the problem is, that the rabbi said that because I'm married to a goy (oy oy oy) - it would be very helpful (to say the least) if I could observe at least one symbolic mitzvah and behave like the good Jewish girl that I am (ROFLOL - the mere thought) - the rabbi suggested to light candles on Friday night. I say - I need help finding a mitzvah that doesn't involve mentioning the name of the lord in vein.
I thought of (quietly) observing the procreation thing - it's fun and if done properly can count as a great mitzvah. the downside would be a baby...
My mom suggested to promise not to drive on saturday — made easy by not having the means or the know-how of driving.
Anyway - My father is coming over in 3 weeks and I'll discuss it with him then (how not to put me in an awkward situation, thank you very much!)
Those who know me would notice that I chose not to explode to the idea that my recovery potentially being held back because of my marriage to a goy (oy oy oy) — I know it is something rabbis say.
I also know what my father is going through (my brother told me in secret) and if this is going to help him sleep at night - I can wear the amulet and pretend I didn't notice the hints made by the rabbi to the quality of my choices.
My mother on the other hand -
Not only she thinks my father is a darling for getting me this amulet - she also thinks that it might be a good idea to slightly change my name... maybe add a letter or two... or add a name... WTF?!
Has the world gone mad?
She gave me a perfectly good name which is MINE.
It is who I am for the last 39 years. It should be at least as good for those to come.
I'm going to meditate on "how to manage parents of a cancer patient".
I give here a public promise - I will NEVER read "Tehilim" nor will I carry such a book within my belongings (I have the terrible feeling this is something that is going to be next).
God bless my dear parents and save them from harming themselves or others in their immediate surroundings.
Amen.
Sleepless in Amsterdam
It's been a while.
Not so much has happened, except for another chemo treatment on 27 April.
I feel rather shitty in general.
I'm tired
I'm depressed
I'm having nightmares
I'm tired
I'm bored
I'm losing my hair
I'm stinking from my mouth
I'm taking medications to treat the side effects of the medications I'm taking for the side effects of the chemo... these new medications are causing me other side effects... it's endless.
I wonder what's the point of it all
And I'm tired of all the above...
1. Losing my hair:
Hair is everywhere.
On the sofa, on my pillow, under my pillow, on the floor everywhere, in my toothbrush, in my food... you get the point. And if you know me — you'd know that I'm still wearing quite some hair on my head.
There's enough for everyone to begin with.
Today I noticed that the gaps between the hairs are bigger. I think sometime next week i'll shave off what's left.
* Positive: I don't have bald patches. The hair is falling evenly — so there are no holes.
** Positive II: Hair is falling everywhere in the body hair may grow. Free treat for the summer. I need to get me a swimsuit.
2. Bad breath:
Yuck. Seriously!
3. Tiredness:
I'm just too tired to do anything. Even too tired to remember what i wanted to do and can't do because I'm tired (which can count as positive, I guess)
I'm sleeping more than I've ever slept. If anyone has some catching up to do with sleeping but no time to manage — I'm willing to help and sleep for you (that's me — ready to step up to help a friend even when I'm sleeping — better than Sarah Silverman!)
Except for now. Now I CAN'T sleep. This is because of being depressed — which is another topic (and also Erik ran out of his nose stickers and he's snoring)
* Positive: I'm writing in my blog, which will give you something to read during work tomorrow while I will be sleeping. Everybody happy!
4. Medications for side effects of medications for side effects of medications...
So this is what's going on so far
The chemotherapy I get has the following side effects (among others, some even more impressive, but not relevant for this point):
Nausea and Diarrhea
To solve these, I take 2 medications with fantastic names: Dexametason and Granisetron (I managed to get the irritating spell check of the blog confused and for once speechless! Ha!)
Granisetron has a MAJOR side effect - It STOPS any bowls activity. Nothing goes up, but at the same time - nothing goes down past the stomach.
After the first chemo I thought I would die of the results of more than a week of blockage.
After the second chemo, I got a powder prescribed by the doctor to dissolve in water and drink twice a day. The lemon scented drink that came up, was so vile, that I really couldn't drink it more than twice, and suffered for the rest of the days — although less than before.
Before the third chemo - I asked for something else. So I got me some Magnesium pills to chew and these work wonderfully, except that they make me... fart like a pig.
I think by now you threw up your lunch, and I apologize for any inconvenience caused by my descriptions but believe you me - from my point of view (and smell) it's even worse.
5. Granisetron is not a happy pill
Another problem with Granisetron, is that it is conflicting with my happy pills (the blue ones that keep me positive). Ooops.
What actually happens, is that on the 3 days I'm taking the Granisetron, I'm sort of going 'cold turkey' on the happy pills, and having the side effects thereof.
The side effects are:
Vivid and violent dreams
Depression (DUH)
The "what's the point" question becomes much more relevant.
Damn it.
On 28 May I have an appointment in the psychiatric clinic at the hospital to see if possible to change my happy pills.
6. I'm bored:
So I will write another post.
Not so much has happened, except for another chemo treatment on 27 April.
I feel rather shitty in general.
I'm tired
I'm depressed
I'm having nightmares
I'm tired
I'm bored
I'm losing my hair
I'm stinking from my mouth
I'm taking medications to treat the side effects of the medications I'm taking for the side effects of the chemo... these new medications are causing me other side effects... it's endless.
I wonder what's the point of it all
And I'm tired of all the above...
1. Losing my hair:
Hair is everywhere.
On the sofa, on my pillow, under my pillow, on the floor everywhere, in my toothbrush, in my food... you get the point. And if you know me — you'd know that I'm still wearing quite some hair on my head.
There's enough for everyone to begin with.
Today I noticed that the gaps between the hairs are bigger. I think sometime next week i'll shave off what's left.
* Positive: I don't have bald patches. The hair is falling evenly — so there are no holes.
** Positive II: Hair is falling everywhere in the body hair may grow. Free treat for the summer. I need to get me a swimsuit.
2. Bad breath:
Yuck. Seriously!
3. Tiredness:
I'm just too tired to do anything. Even too tired to remember what i wanted to do and can't do because I'm tired (which can count as positive, I guess)
I'm sleeping more than I've ever slept. If anyone has some catching up to do with sleeping but no time to manage — I'm willing to help and sleep for you (that's me — ready to step up to help a friend even when I'm sleeping — better than Sarah Silverman!)
Except for now. Now I CAN'T sleep. This is because of being depressed — which is another topic (and also Erik ran out of his nose stickers and he's snoring)
* Positive: I'm writing in my blog, which will give you something to read during work tomorrow while I will be sleeping. Everybody happy!
4. Medications for side effects of medications for side effects of medications...
So this is what's going on so far
The chemotherapy I get has the following side effects (among others, some even more impressive, but not relevant for this point):
Nausea and Diarrhea
To solve these, I take 2 medications with fantastic names: Dexametason and Granisetron (I managed to get the irritating spell check of the blog confused and for once speechless! Ha!)
Granisetron has a MAJOR side effect - It STOPS any bowls activity. Nothing goes up, but at the same time - nothing goes down past the stomach.
After the first chemo I thought I would die of the results of more than a week of blockage.
After the second chemo, I got a powder prescribed by the doctor to dissolve in water and drink twice a day. The lemon scented drink that came up, was so vile, that I really couldn't drink it more than twice, and suffered for the rest of the days — although less than before.
Before the third chemo - I asked for something else. So I got me some Magnesium pills to chew and these work wonderfully, except that they make me... fart like a pig.
I think by now you threw up your lunch, and I apologize for any inconvenience caused by my descriptions but believe you me - from my point of view (and smell) it's even worse.
5. Granisetron is not a happy pill
Another problem with Granisetron, is that it is conflicting with my happy pills (the blue ones that keep me positive). Ooops.
What actually happens, is that on the 3 days I'm taking the Granisetron, I'm sort of going 'cold turkey' on the happy pills, and having the side effects thereof.
The side effects are:
Vivid and violent dreams
Depression (DUH)
The "what's the point" question becomes much more relevant.
Damn it.
On 28 May I have an appointment in the psychiatric clinic at the hospital to see if possible to change my happy pills.
6. I'm bored:
So I will write another post.
Wednesday, April 14, 2010
13 April - Second Chemo
The seat by the window was waiting for me.
The nice nurses as well.
The aluminum foil covered bags of medications were hung on the pole next to me and would, again, be dripping into my veins one after the other.
Medications that are sensitive to light. Scary stuff. This shit is going into me and I should believe it's meant to help me?
Who is the sick f***er that came up with these things?
My hair is slowly getting over the separation anxiety and letting go of my body. I have the feeling that my hair really really likes me. Much more than I like it, and it makes me feel guilty. Because the only bit of hair in my whole body I can tolerate and might feel slightly sorry to lose, are my eyelashes. The rest can go. Never served my right anyway... but it stays — or maybe not for long now? Hey! I have Adriamicine! The ultimate weapon against naughty hair. (Any hair that is brave enough to stay — will be shaved.)
I couldn't fall asleep last night. Didn't feel so good. Some new pains are there now. I guess the more treatments I get — the more new pains I will discover. The body is starting to realize that the first chemo was not a one off mistake and that it's coming again... the inner resistance is recruiting and I suppose next time will even be harder.
The people in the day-treatments room on my Tuesdays are quite the same crowd. I think next week I will start discussing them. Some are quite interesting in a disturbing kind of way.
The nice nurses as well.
The aluminum foil covered bags of medications were hung on the pole next to me and would, again, be dripping into my veins one after the other.
Medications that are sensitive to light. Scary stuff. This shit is going into me and I should believe it's meant to help me?
Who is the sick f***er that came up with these things?
My hair is slowly getting over the separation anxiety and letting go of my body. I have the feeling that my hair really really likes me. Much more than I like it, and it makes me feel guilty. Because the only bit of hair in my whole body I can tolerate and might feel slightly sorry to lose, are my eyelashes. The rest can go. Never served my right anyway... but it stays — or maybe not for long now? Hey! I have Adriamicine! The ultimate weapon against naughty hair. (Any hair that is brave enough to stay — will be shaved.)
I couldn't fall asleep last night. Didn't feel so good. Some new pains are there now. I guess the more treatments I get — the more new pains I will discover. The body is starting to realize that the first chemo was not a one off mistake and that it's coming again... the inner resistance is recruiting and I suppose next time will even be harder.
The people in the day-treatments room on my Tuesdays are quite the same crowd. I think next week I will start discussing them. Some are quite interesting in a disturbing kind of way.
...and the downs
The second week after the first chemo was a week in the sign of an emotional crash.
Besides the boredom and the inability to do much to entertain myself, I've been confronted with 2 big blows to my spirit:
But on the other hand — having cancer puts you under trial. Mainly, I think, it's you against your bottom line.
You learn to confront your bottom line and your relationships with your environment and with your self and old and non beneficial relationships are fading out to make place to new ones that are what you need in order to heal.
i cannot take the role of the 'responsible adult' with the people whom role it actually is, and always had been. i need to care only for me. Anyone that cannot support me on this task — can't take part in my healing process.
The only choices I am willing to make at this moment, are on the level of "in which hand I want the infusion done".
Besides the boredom and the inability to do much to entertain myself, I've been confronted with 2 big blows to my spirit:
- The first blow was from the most basic relationship most people have, and this parental relationship, on which I counted for endless non conditional love and emotional support has failed me in the worst possible way. No, she hasn't died on me, thanks god. She just went off and left me, and hadn't spoken to me in almost a week now. nou ja. I shouldn't dwell on this longer. I have a cancer to take care of. I've just learned another lesson in life which i'm not sure what's its purpose, and why must i learn it now of all the last 39 years of my life
But on the other hand — having cancer puts you under trial. Mainly, I think, it's you against your bottom line.
You learn to confront your bottom line and your relationships with your environment and with your self and old and non beneficial relationships are fading out to make place to new ones that are what you need in order to heal.
i cannot take the role of the 'responsible adult' with the people whom role it actually is, and always had been. i need to care only for me. Anyone that cannot support me on this task — can't take part in my healing process.
The only choices I am willing to make at this moment, are on the level of "in which hand I want the infusion done".
- The second blow are thoughts of death. These come when you least expect them. and they are so scary. Looking at trivial things around you, like the curtain of your bedroom, or the rooftops of the buildings across the street and thinking this is the very last time you're looking at them... depressing. I must check if any of my medications contradict the happy pills I'm taking... can't afford death wishes at this stage, can I?
I can't go out for long time. I get awfully tired after around 200 meters of slow walk. All I can do is sit at home... maybe I need to replace the hideous curtain in my bedroom. This should cheer me up, right?
Saturday, April 3, 2010
B O R I N G
Cancer turns out to be extremely boring.
I'm starting to develop some conspiracy theories (and some less sophisticated theories) as of why cancer is such a deadly thing.
nou ja...
Maybe i'll go to sleep.
boring...
I'm starting to develop some conspiracy theories (and some less sophisticated theories) as of why cancer is such a deadly thing.
nou ja...
Maybe i'll go to sleep.
boring...
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