PET Scan and the future

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.

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 :-)

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.

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.

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.

...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:

• 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?

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...

1st Chemo + 4 Days

It's the end of the 4th day after my first chemo. it's been going surprisingly good — comparing with the intense threats I got from everybody around me.

No major side effects have been registered.
The only things I can clearly notice are the fatigue, the excessive sweating and the sore mouth and throat.
Headaches are also noticeable and earaches.

So I'm spending (much) more time in bed.
My imaginary friends at "World of Warcraft" are keeping me company. I give them names with tiny hints of current affairs, such as "lymphoma", "kankerella", "chemotrip" or "lumpia" (lumpia actually means "egg-roll" —  perhaps it reflects my desire for some chinese take-out?)

I've got my dragon-tail powders from the chinese herbs specialist, as well as some extremely smelly pills.

That's it for now.

30 March - First Chemo

Chemo treatment is mainly boring, specially if you forget your reading material at home...

I don't feel a thing, except for some mild nausea, bit of headache, and mild fever.
I've been warned that the side effects should start at night or the next day or two, but so far the only hair that fell off my head was a white one and this supposed to be a good thing, right?

I'm drinking lot's of home made Ginger tea, eating home made chicken soup (yum yum) and candy bars.
Wet Matzo with salted butter and "Hashachar" chocolate spread is a winning treat from the holyland (but be careful! Wet matzo is not passover kosher! (and yet — it is lovely)

Nervous Breakdown (Almost)

It's Saturday.
Nothing happens today.
Only waiting.

I'm nervous and upset and getting crazy with anticipation.
Erik is taking good care of me and is being super patient with my craziness.
I have some relaxing medication (aka — sleeping pills) but trying to avoid filling my body with stuff before the 'real thing' so it doesn't push back on Wednesday...

Tomorrow my friends E. and E. are picking me up to have some nice day out in town — to cheer me up and have some fun.
At least it's something out of the house.
Maybe we can find a nice hat for me?!

Step Three - Testing your patience

Or - the patience you need to have as a patient, to go through all the following tests and discussions before anyone will take the first move to kick the cancer's rear:

9 March

- I have cancer

(3 days gap — time to get used to the idea and start boiling in it)

12 March

- CT scan. With this scan the doctor will determine the stage of the cancer.

The test is something else by itself: an hour before the test you get a bottle of 1 liter of a sperm-like fluid, with the charming flavor of slightly rotten oranges. You need to drink it all throughout the hour and not at once (have no mistake! — It's designed like this to get you to develop the acquired taste, not to get the fluid spread evenly in your body). During the test itself, you lie on a bed-like thing, you get something injected to your body that makes you feel like you've just wet your pants, and while you're busy worrying that your shameful pants-wetting accident is visible (and contemplating how you're going to say something to the "people in charge" because nobody told you to bring change of clothes!) — the bed slides in and out of a ringy machine with disco lights going round you. yippee! And then it's over. You get dressed and are happy to discover that the pants are not wet. It was just your senses playing a trick on you (WTF?!). Time for a cigarette (you hadn't had one since 06:00 and it's now past 11:00)

(4 days gap — boiling continues. What will be the results? How many jelly-beans are there in my body? Where else are they? How long do I already have this shit?...)

16 March

- First appointment with the Oncologist and the oncology department's staff

I got to hear the stage of my cancer - Stage 2b. this means stage 2 with "side effects" such as night sweating, itching and other strange feelings in the body. This is good news because although the cancer is located in 3 locations within the lymphatic system, all 3 are on the same side of the diaphragm and no other organs are involved. It is also positive news, because it means that I can get into a European Research that is there to check if it's possible to exclude radiations from the treatment of Hodgkin. And if there is the possibility to avoid radiations — one should choose this possibility. Radiations are told to be very bad for you on the long term.

I was introduced in general terms to the chemotherapy used for treating Hodgkin.

Now it's time for additional tests, to have in the file and for the monitoring of the impacts the chemo will have on the overall functionality of my body.

Everything in the Oncology department is very efficient. Things are happening super-quick and with the friendliest of smiles.

17 March

- Bone Marrow test

The first and most "charming" test.

It was designed in HELL specially to cheer people up.

It has an empowering effect on you:

If you've survived the bone marrow test, you can survive anything. Even cancer.

The test is done to check if the cancer had spread into the bone marrow.

If it had - the stage of the cancer becomes immediately stage 4.

18 March

- Acupuncture to stop smoking

It's strictly forbidden to smoke while benign treated with the specific chemo I'm about to get.

I don't like this cancer anymore! You can't even smoke quietly!

23 March

- Appointment with the Oncologist

I brought in the signed document of the research. I'm in!

The doctor asks if I had a date in mind to start the treatments.

30 March seems like a good date for me. It is also a good date for them.

30 March it is!

- Chest X-ray

- Dental Check

Before you start chemotherapy, it is important that your mouth is free of infections

(you'll get your fair share of those from the chemo in due time)

It was the first time ever that I went to check my teeth and they were found in good condition.

I must do something right.

24 March

- Heart Muscle Function test

Interesting stuff!

A bit of radioactive stuff goes into your blood and than you lie for 30 minutes

in a sci-fi machine that takes pictures and video of the way your heart is working

and how much blood it pumps in and out...

I almost fell asleep.

- Meeting with the Oncology Nurse

Time to ask all the questions and get them answered.

This is a very important chemo-orientation meeting.

Now everything is finally clear.

25 March

- 2nd Acupuncture treatment

- Blood Test before chemo

- Lung Function Test

It's great to see how after 22 years of intensive smoking — my lungs are functioning as they should.

And that's it!

Between 25-30 march I'm excused from visiting the hospital.

Next visit will be for the first chemo treatment.

Nice weekend to us all :-)

Step two - Spread the word

...And then you need to inform your loved ones.

How to do it — is all up to you.

Having made the choice to talk about it freely - I first called my mom. Made sure she was sitting in a comfortable chair and told her that it is Hodgkin after all (she'd heard the word several times from me before during the self-diagnostic stage and had made her own research on Hodgkin: the man and the disease he so carefully chose to discover).

She said something like "shit" — in mother's language that involves tears and badly-disguised panic.

Afterwards I called my father, with whom I am just building a new bond after long years of not sharing our life experiences with each-other. This was a bit tougher. My father obviously cares for me dearly, but he is not a person who share his feelings, and he doesn't really know me, my cynicism, my sarcasm and overall sense of humor. He also doesn't know my sensitivities and what can or cannot be told to my ears. And to be perfectly honest - I know the exact same nothing about him.

Strangely enough — the fact that his wife picked up the phone and got the news from me first, made it easier for me to repeat the story for him afterwards. I've already released the news to "his side"... he had some sense of the news before hearing them.

And then... I had to scream it out for everybody else.

So - I posted the one liner "it begins with a C and walks sideways" on my FB status.

The confused reactions started to flow, and I started answering the puzzled questions with details.

I later heard that a friend, 9 months pregnant, found it too brutal...

Sorry... couldn't help it.

Dealing with the news of a sick friend or family member is not simple:

most of us (me included) don't know what to say to this person, whom we love and care for. we are worried we might say the wrong things. so we avoid. and we keep avoiding dealing with the news on person-to-person level and the outcome is many times that we lose the whole connection with this person - just by being shy, and then being ashamed with our shyness and so it continues to roll until we no longer can initiate communication with the sick person.

My sister in law is getting confused with her own will to help.

My brother in law is completely lost for words, so he says nothing.

A loved cousin has told my mom that she doesn't know how to react.

Some dear friends have completely vanished

Some other are caring and doing more than I would have ever dreamt.

Some send cards.

There's a little girl who sends me drawings she makes for me in pre-school (by her own initiative!)

Some people pray for me in their houses of worship

Some share with me their own distresses so I won't feel lonely

Some avoid sharing their extreme joys so i won't feel lonely

...

When I was on the healthy side of things - I would be exactly like each and every one of them (except for the paying types... it has to end someplace).

If in the past I would feel that any of these reactions is wrong and would be deeply ashamed by reacting it myself - I now suddenly see it from the eyes of the sick friend.

I now understand that except of telling me to drop dead — all reactions are welcome.

I am more than able to contain them and deal with them all.

There is absolutely no wrong reaction.

Let's talk about it!

Step one — get used to it

After you've been told of your fresh status as someone with cancer — you're sent home to get used to the idea.

It's quite surreal, because it's normally something that happens to other people and it's strange to look at cancer as something of your own.

Thinking of it may bring up hope of finally winning the lottery because that's another thing that usually happens to others, but you soon realize that these are wrong assumptions and the only thing that happened to you is your cancer. Bummer. It would have been much easier to look at €25.000.000 as your own, wouldn't it?

It's not simple to look at cancer as something that happens in your own body.

There's a strong sense of betrayal. Your body is cheating on you.

I'm a cynical person. I make dark jokes about it. Some of my friends and relatives find it hard to take it. But it is my own way of coping. If I got so far as having cancer at 39, it must be a joke. And the joke can either be on me or on the cancer. And it is my own personal preference that the joke won't be on me.

I chose the path of talking about it, out loud and clear. No whispering of the C word.

No euphemism. It is cancer, not an exotic Texan Virus.

Another thing is to find someone or something to blame.

I tried and tried and couldn't find anything.

Although i'm a heavy smoker, although I'm a devoted coffee drinker, I've had my share of alcohol consumption to last for a lifetime of drunkenness and I'm a not exercising if it's up to me — hodgkin's Lymphoma has no causes, at least not causes that have anything to do with me.

The majority of the patients are men, HIV positive with history of immune system issues.

I'm not part of any majority related to this particular cancer.

The odds would be for me to have breast cancer - just by being a woman, or lung cancer for being a smoker, or skin cancer for spending most of my life under the Israeli sun (including the full length of the 80's — when we used baby oil to properly fry ourselves).

So why me? Why now?

What is a "Texan Virus"?

A Texan Virus is a general name for something your doctor cannot identify.

When you feel ill, when you have pains, when you're constantly tired and your skin itches, when you're sweating yourself awake at night, when your lymphatic glands are swelling and staying swollen and when you start sounding to the doctor as a deranged hypochondriac — and when the only point of reference for the beginning of the majority of symptoms is your 2 weeks business trip to Texas - this is when the option of "an exotic Texan virus" comes to your doctor's mind.

And then you are being referred to an internist — to have them run the additional tests (like a full blood work, chest x-ray etc.) and to stop taking up precious time from those regular people with flu.

The internist follows your family doctor's indication and sends you to do all sorts of tests to look for this rare exotic virus us Europeans can only get when we travel as far as Texas - or perhaps to rule it out and send you home.

And after 10 days of self diagnosis with the help of your dear friend google, when you are absolutely certain that what you have IS cancer, and you even have a specific cancer that fits the full detailed set of symptoms, and you are getting all mad with fear for your life and thoughts of chemotherapy, and god forbid — death — just then all the test results come back negative.

You get the news that should make you thrilled - but you are upset - because you know something is VERY wrong with you.

And then you have the following conversation with the internist:

INT: That's good news, isn't it?

YOU: Well, yes, but...

INT: What did you think?

YOU: Well, in the past weeks I've been googgling my symptoms, and the results were all sorts of Lymphomas... or lupus...

INT: So to rest your mind - I can order some more specific Lupus tests and get a biopsy of one of the glands, if that's what you want.

YOU: let's go for it.

So after another 3 weeks you have a gland removed. The gland is attached to your neck and likes its place so it's actually painful through the anesthesia - but eventually the surgeon wins and manages to cut it off and send it to the lab.

Another 2 weeks of waiting for the results - you go abroad to celebrate your brother's wedding, you still feel like shit, but you are happy and based on the previous blood tests - you are positive the next ones will come clean as well.

And you go to get the results.

And the internist calls your husband to join you in the office.

And the internist tells you that the gland, which looked like a harmless pale pink Jelly Bean when it came out of your neck and was placed in preserving liquids — is actually a Hodgkin's lymphoma.

Yes, your friend google was right.

There is no Texan Virus.

If there were — it would have had a name. Like Hodgkin lymphoma has a name.

YOU have cancer.

And this is how suddenly your life turns around.

What do you do with cancer? — This is one of the questions I will try to answer as I go through the magical journey of beating it.