La Tchatchkerie

I said there was no list then went and made up a bunch of projects. There is really no list this year. Well, wait. Yes, there is.

To do in 2010:

1. Beat cancer

If I can just do that, I'll be happy.

I think I may have finally learned my lesson. No goal list for 2010. I have found that there's a wide gulf between what I plan to do and what I actually do. Mostly this is because of left-field surprises like thyroid cancer because otherwise I am pretty methodical. I have a vague notion of things I'd like to work on for the year: more drawing, more guitar, etc. It's true that creative types need scheduling. And I have that. I plan to start Illustration Saturdays. Basically, I'll take an unillustrated article or listen to a 'This American Life' story and try to capture it visually. I expect no small amount of frustration, but it will be a great learning experience. I also want to re-establish Watercolour Sundays. Obviously, things will have to be flexible because there's another cancer surgery and treatment on the horizon. There's also an idea for a graphic novel kicking around that used to be an idea for a novel. We'll see where that goes. I want to go at it playfully. If it isn't fun, what's the point? In needlework news, I am going to embark on the adventure that is embroidery (this will likely become part of illustrations).

It's really weird how my dreams of illustrating just flew out of my head in October after I heard that there was still a tumour. After my surgery last March, it felt like my right brain went into hyperdrive. Not sure how or why, but drawing and other visual activities took over my brain. I reconnected with a part of myself that I had totally forgotten about. My verbal skills have slowly been catching up. That is weird to say. I mean, I do French to English abstracts and translations full-time. Highly verbal. I've written a novel. Somehow, after the surgery, I lost the concentration for that. Or, rather, needed every ounce for my job and didn't have anything to spare after the work day. Sitting almost entirely still and drawing, however, I have total concentration. Perhaps not surprisingly, the drawing stopped with the ultrasound and biopsy and doctor's visits in October. Being mostly ignored by my cancer team did not do much to boost my confidence or morale. What brought me the most peace left my mind entirely and I was sucked up into doubt and fear and confusion. One day this last week, I went onto my Amazon.co.uk Wish List. I saw illustration and comics books on it and something washed over me. Trust? Faith? Not sure. I had been going in a million directions, but something clicked and I had direction. I am trusting this direction. Where am I going? Not sure. It's like going to a new city, walking around with a bad map and trying to find a landmark. At some point, you see a street and something in you says, 'This will get you to the place you've been looking for.' You turn onto the street with the knowledge that even if it doesn't take you where you need to go, you can always retrace your steps.

In all the planning, I lose the doing. I hope that 2010 will be year of focus, of input, of output, of connection, of discovery, of confidence. Gonna make my own luck this year. 

So I got the scan results as promised. As of 17 November 2009, the tumor in my neck was exactly the same size and no other lymph nodes showed any signs of invasion. There are some micronodules in my lungs, but a real experienced retired cancer nurse told me that, in 90% of cases, the second round of radioactive iodine does those in. Here's hoping!

My boss agreed to let me borrow the work laptop to telecommute on Tuesdays and Thursdays. I am really hoping that this will help my body rest a bit so that the nasty effects of the hormone treatment will be less of an issue. I'm really glad that this overdose of hormones has kept the cancer from metastasizing because being forced into hyperthyroidism has been absolute shit.

My nuclear doctor called me back today to say that I could not see the surgeon before 5 Jan 2010. Actually, what she said was that the delay was perfectly normal for a surgery after meeting with him in late November. I explained that I did not meet with him in late November. She was surprised, she did not realise that the 5 January mtg was not my surgery but, in fact, the appointment to set the date. There is obviously some great communication going on between the members of my cancer team. This lack of organisation is beginning to worry me and make me lose faith in their competence. I demanded that I receive the results from my scan performed in mid-November. She said that she'd send them right to me, but insisted that I need not be worried about the delay.

If this metastasizes between now and then, they'll wish they'd been more careful. Because I will sue them, the secretary and the hospital to within an inch of their miserable little lives. Doctors like this should not be allowed to practice. They are a menace to every patient, not just to me.

I had to wait until 30 November to hear from my endocrinologist that my thyroglobulin antibody count (taken 15 October) had fallen from 69 (July) to 25 (October). Great news, right? I am happy because it should mean that my thyroid cancer is being contained. Why did I have to wait for good news that would have helped me stay positive about beating my cancer? What about all the sharp pains in my breasts and arm pits that none of my doctors want to hear about?  Why do I have to fight tooth and nail to have results from my scan that would SHOW ME whether this has metastasized into my breasts, bones or lungs? I am obviously not a priority for this group of doctors. And I am afraid that none of their patients are important to them. It's a wonder anyone in France ever survives cancer.

So here's the recap:

No meeting with surgeon until 5 January 2009. Should be getting results of scan from hospital soon, which I will be forced to interpret myself because I cannot get in to see a doctor at the hospital. I still say thank goodness for national health because, if I were in America, I would be bankrupt and probably dead by now. With a pre-existing cancer, I would not have been eligible for insurance in the first place. That said, I pay out the ass in taxes for national health. As a cancer-afflicted tax payer, I deserve better. Every tax payer in France deserves better medical treatment than what is currently 'available'.

Sad news.

We had to give Perla back to the adoption people because she was literally tearing herself apart when we weren't with her. She manifested almost every sign of canine stress imaginable all the time except when sleeping. When she saw the foster home lady, she ran to the lady's car and didn't look back. At least, she'll be happier and safer there. We tried our best to let her know that she was safe and loved with us, but it didn't work.

We've decided that the next dog will be a Corgi puppy. Not sure when. I know and love the breed and their temperament suits ours perfectly. Besides that, I no longer trust rescue groups in France. After having been warned about them, I gave one the benefit of the doubt. They said that they had a feeling that it wouldn't work out after allowing us to adopt her! What a horrible thing to put a dog through! They have no business running a dog adoption association.

My next news is not so much sad as enraging. My surgeon had a death in his family so we received a last minute call to cancel my meeting with him tomorrow. Ok. I am sorry for his loss, etc. The secretary then forced us to take a date in January 2010 and said that my cancer wasn't serious. Isn't all cancer a little serious? I do plan to call back and ask if there is no way to be seen earlier and to ask for my results. I do have the right to see my results at least and talk them over with one of my doctors. Don't I? Just another example of my fuckwit cancer team. I understand that this is a hard time for the surgeon, but his staff need to get training on their people skills. There is no psychological help in France for people who have cancer from what I can tell. I have asked about it at the hospital -- nothing! So not only do they deprive you of the psychological help you need, but they also belittle your cancer and send the message that they don't care if they cure you or not. Every chemo session my father had, he had to fill out a questionnaire about how he was feeling emotionally as well as physically. Questions included, 'How often do you contemplate suicide?' It was all taken very seriously. Not in France, though. You're just another burden on the national health so they string you along. I almost have the feeling that they want it to metastasize further or are hoping that I'll off myself so that they make a dent in their case load. There are other surgeons who could see me at the hospital to at least give me my results. That would be the professional thing to do. But when one is in this situation and one has the sense that none of the doctors care about one's case? Guess what that does for a cancer patient's morale, fucktards? One day, you will also have cancer. I guarantee it with the poor management of nuclear waste in France. Then you'll get to feel this pain and this fear and this rage. I'll probably be dead so I won't even get the chance to gloat.

Hello again, reader.

My husband fixed the netbook! So now I can blog again.

So, what's new?

Cancer update:

°Another surgery. Scan on the 17th November, meeting with surgeon on 24 November to set surgery date.

°Another radioactive iodine treatment probably in March 2010.

°Levothyrox dose is still too high, but I get to take a lower dose Friday through Sunday.

Novel Update:

°Working on characters and their backgrounds. Oddly, the plot is forming more solidly through this process

°I am not doing NaNoWriMo. I have metastatic thyroid cancer and am training a dog with serious abandonment issues.

Dog? Dog? What dog?

Rather than adopt a greyhound (we were having a hell of a time getting associations to respond to us, most still haven't at all), we went through an adoption association in the Ile-de-France region. We were surfing adoption sites when I saw Perla, a three year-old Mini Pinscher who was abandoned in La Réunion. The  S.P.A. there figured she'd have a better chance of being adopted in France. I fell for her immediately and we started the process.

She is a sweet girl as long as she's not alone. Once alone, she has panic attacks brought on by separation anxiety. We're working on that. Doing clicker training, which is a blast. Fun way to teach, to learn and to bond. She has sit inside the house down perfectly. We're working on outside the door and in the elevator. I can't blame her for not wanting to stick her bare butt on the cold, wet ground outside. Next up, place. Very important. Her favourite things are cuddling on the couch with me for hours, breakfast, dinner and her Kong toy. It's the only toy she understands how to play with. The others are a mystery to her. She loves to go on walks so much, that I have lost another 4 pounds since we got her. The other day we found one of Chester's stray hairs on her forehead. We chose to see this as a sign of approval from the beyond. I think he really would have liked her. They would have been great nap buddies. As hard as the separation anxiety can be, we're going to work through it. She'll learn that we won't abandon her. The vet is trying to help by giving us a pheromone difuser and some doggie downers. I have contacted the adoption association for advice, tricks they used to have her stay calm when she moved in with them. No response at all. I find that odd because they made so much noise about us staying in touch and blah, blah, blah. We ask for any help and they vanish. Very weird. We'll look into crate training as well. The Kong does not seem to be enough to overcome our absence. We'll get there.

I think that is all the news I have for now.

No functioning computer at home means no posting. Trying to do a quickie posting at work on my lunch break.

Quick update: I had my second biopsy on 1 October after the second ultrasound showed more suspect lymph nodes. I will have the results on 15 October. I feel that I am doing a fairly decent job of staying positive and not letting cancer define me, even though I have been living with it for 18 years. Trying to control my anger at doctors past and present who didn't and don't take my case seriously enough to really help me. That said, there were a few who were awesome. Mad props to them.

I am looking forward to what I can do when this is all over and what I can do now to make it more bearable.

Near and slightly less near future plans:

*Iyengar yoga class
*Start sewing my own clothes with awesome new sewing machine
*Start working on my second novel
*More walking
*Less stressing
*Learn and get PHP certification
*Make some bagels
*Rescue a greyhound

It is almost impossible to get anything called a bagel in Paris that actually tastes like and has the mouthfeel of a bagel. It is bagel-shaped bread usually and one makes this painful realisation upon the first bite. The heart sinks and, somehow, you push yourself through eating it because you bought the damn thing.

I have a dream. I want to bring real bagels to Paris. And this fall, once my surgery or treatment is over, the test kitchen begins.

My dream usually involves winning the lottery, but I am serious. I will start a test kitchen, I will research how to start a business in France (because I just haven't had enough bureaucracy yet). In my dream, the first shop is in rue des Martyrs because I love that street, three of my friends live on it or nearby-ish, and it's a good food street. It's also close to two synagogues. Once a Parisian has had a real bagel, they'll never go back. I know it! Eventually, I suppose that I'd open one within walking distance of the Sorbonne. It's just a smart business move.

Looking for inspiration on Amazon, like books from the founders of Einstein Bros/Noah's, I saw this. Just another reminder to be thankful I no longer live in the US, especially in the SOUTH. There's a book about the making of Lender's Bagels, which, you know, feh. There's an MBA business plan thing, which might be helpful. Eventually, I might branch out into making tortillas and breakfast tacos, too. I want to call it Tchatchke's Bagels. Simple, funny in both languages, but for different reasons. Not looking to make a franchise-y chain thing. I just want a couple of stores, preferrably with seating, but probably not at first given the price per square meter. I will advertise in FUSAC and other expat papers. I'd have all the classic flavours, including the EVERYTHING. And I won't shy away from some sweet flavours for the kids, but NO food colouring. I would find an importer for cream cheese (probably the same guy Thanksgiving uses). I would offer drinks, maybe even smoothies. I'd even sell cheesecake, which I can't even eat! All the more fo my customers! I don't know. BIG AMBITIOUS SILLY dream that may not amount to anything. But what the hell? At least we'll have some good bagels to eat this winter, if nothing else.

I don't think US bagel chains would do well in Paris. Starbucks is struggling with profitability here, mostly because of rent, but also because they rely heavily on tourists (no matter what they say) and there just aren't as many tourists in Paris. Most French people cannot afford to drink there on a regular basis because pay is too low here. I was so happy to see a Jamba Juice-ish type place open up in a few locations, but they aren't doing well either. Prices again. They are setting up in touristy areas where rents are astronomical, their prices reflect that. Also, French people are not as health conscious (obsessed?) as Americans. I have a hard time imagining an average French person here willing to ingest anything with spirulina in it. You'd have to wait for an editor at Elle or Marie Claire to do a little piece on it. And even then. I think bagels would work well in that they are a type of bread and the Atkins diet never caught on here. However, I'd want to start in a neighbourhood. Not as some bloated US chain concept stomping on independent businesses in Paris. That is really not welcome, especially in baking circles. A smoothie is a new, quaint thing here, but baking has a serious cultural heritage. I want to be a peer. I want to get to know the faces and names and preferences of customers. I want to see the eyes light up at the first bite. I want to stamp the customer loyalty cards. It's a good thing I'm an early riser. 

My last post was a perfect example of how most suffering is caused by wanting things to be different than they are. I rescind nothing. It hurts like hell that some people won't take the time to check in (including through Facebook or Twitter) or even respond to an e-mail. I do feel isolated. And some sick people actively need contact to stay strong. I acknowledge that and I am not running away from it. However, by dwelling, I am wilfully increasing my own suffering, which helps no one least of all me. This is how things are right now and I cannot pretend that I have always been a top Grade A friend. Everything changes. Maybe these people will write or call. Not holding my breath. Just a reminder. Things change. There are probably lots of reasons why they aren't, like I said in the other post. Maybe their lives are crappy, too, and I need to stop whining and check in with them once I have the energy. But I'm really too sick to come up with excuses for other people right now. Some will just never think to contact me or reply. Their loss. Not falling into an idiot compassion trap. Some of these 'friends' do not deserve that title and haven't for some time. I was foolishly expecting different behavior and got more of the same. No blame, no guilt, it's just how things are. The sooner I can accept that and let some of these people leave my mind, a lot of the hurt will pass away.

Another cancer post, since that's all my life seems to be about at the moment.

You know what sucks the most about a long-term cancer treatment other than the physical stress and pain and the constant psychological strain? It's how some people close to you just get so blasé about it or even forget that you are going through a big, painful ordeal. Some even have the balls to get upset if they haven't heard from you in awhile.

I have already posted about this behaviour, so forgive me for repeating myself. And if this post pisses some people off, too bad. If you're pissed off, it's probably guilt, which doesn't help anything or anyone except the Catholic Church and Jewish mothers.

In my set of behavioural codes, which really aren't that bizarre, the onus is on the HEALTHY party to contact the UNHEALTHY party most of the time. The unhealthy party is really too busy dealing with side effects and exhaustion and emotional melt downs. Some days are ok, but most days are REALLY, REALLY bad -- so bad, that you just can't muster the energy to write to every single person you know and ask how their day went. I know we're all grown-ups and have busy, busy lives. However, if you care about someone who also happens to be ill, you make an effort. Well, I do. Even with cancer, I try my best to stay in contact not only with sick friends, but with everyone. After awhile, though, you realise that you're doing all the work in the friendship and, even though the other party must know how tired you are and what a struggle it is, they do nothing to help keep the little friendship boat from going over the waterfall to its doom. Are these people really friends? A question to examine.

I am lonely. I don't need constant attention, but a phone call, an email more than once every three months (if that) would be nice. I know that a lot of people don't like to hear about cancer and its treatment. I do not harp on about it. What I need is contact, to feel that I haven't been forgotten, and to talk about NORMAL things and hear other people's stories. Why would I want to blather on about cancer when it is what I am living through every fucking second of the day? Besides, I have found great support online for the cancer. I need non-cancer contact, just friends chatting to friends. It helps relieve the psychological strain of having cancer, it's like an oasis, a temporary mental vacation from the sturm und drang. I feel like a pariah and, frankly, like quite a few people I know do not care about me at all. Maybe that's unfair. But that's what it feels like. How long does it take to write an email? Especially if it's just a sentence long? Why should anyone have to remind close friends to check in on more than a seasonal basis? That's just sad.

Dear So-and-so,

I'm not dead yet!

xoxo,
Your Cancer Pal

I already went through this as a teenager with my first cancer. But I wrote many friends a blank check because we were teenagers. Cancer is not a normal thing for teenagers to have. Why would any 16 year-old know how to deal with their friend's cancer? Now I'm 32 and many people I know are my age and older. They should be more mature, less self-centred and, sadly, more experienced with major illnesses. Maybe it's time I got all high school and started categorising my friends: those who give a shit and those who do not. Ridiculous.

This email does not apply to everyone I know, but there are a few people who just don't understand how friendship works. Maybe they're highly functional autistics, maybe their lives have gone to shreds, too, and I should stop being a baby and email them right now. But you know, this is something I've noticed. My friends who are going through heavy shit, too, are the ones who interact with me the most. Why is it so hard for some perfectly healthy people to find a couple of minutes in their day to contact an ailing friend? Is it because they really don't know the difference it would make? Just write and vent about work or laugh about something funny that happened. Share a link. Dedicate a song. It doesn't take much and it can turn a sick person's day around.

To those who say, 'I don't want to bother my sick friend with my day-to-day dramas', please do not use that as an excuse to cut off contact! Your friend, sick or not, is your friend because they care about you and your life, which is made up of day-to-day dramas. Their illness did not remove that caring. And just think, opening up about your day can provide an escape for a sick friend. Win-win! 

I just want anyone who reads this to know just how lonely it can be to have any long-term illness. And how desperately a person in that situation just wants to have some sense of normalcy and needs to feel like they still count. It really helps. Believe it now before you have to experience it for yourself.