Au Revoir

A message from Soleil's family

Barely one week after her last post, Soleil was admitted to the hospital again because of infections and severe respiratory problems. Despite the best medical care and her incredible determination, Soleil was unable to recover. With unbearable sorrow, we regret to inform her blogger friends that Soleil passed away two weeks ago. Our beloved daughter faced each day with optimism and great courage, and made every moment of her life count. Our hearts are broken as we will forever miss the richness that Soleil brought to our lives each and every day.

A week out

I've been out of the hospital for a week, and it's been interesting. My balance is definitely off because of the ear infection, and that will supposedly stick around for a few more weeks. I'll.probably be getting a home health aide to help me around and make sure I don't fall. I'm also getting a platelet transfusion every other day, and as a premed, to prevent reactions, they give you benadryl, and that puts me right to sleep. So I've been getting a lot of sleep!

Otherwise, I FINALLY saw Harry Potter 7 Part 2! It was supposed to be a birthday activity, but I didn't get discharged until med afternoon, so we put it on hold. I'm so glad I finally saw it, it was very well done. Not as god as the book, of course, but a good movie adaptation.

And my brother started football season! We were at the game, a home game, so we got to sit in the President's Box because we are members of some sports support club. Yeah, the perks of giving money to Division 2 schools are pretty nice :) My brother played very well and the team won, so it was a good game all around!

Out!

I was discharged from the hospital yesterday evening. I'm glad to be out. Not a lot of time to write now, but I'll update you on my health stuff later. Hope you're all doing well!

You'll never guess

I've been in the hospItal since Wednesday with an ear infection! I'm feeling.better I think? I'm having trouble balancing when I stand up and walk around, which I definitely didn't need on top of all of the rest of mobility problems I've been having. Uuuggghhhh. Anyway, That's what's going on here! Hope you all are enjoying the end of summer,

Book reviews

I love to read and have always been a voracious reader. One of the best parts of not doing anything is that I have a lot of extra time to read! Here are some reviews of books I've read recently.

Major Pettigrew's Last Stand: I really enjoyed this book. I read it about a year ago, as a recommendation from Amazon, and it was an excellent recommendation. It's about a retired major who becomes friends with a Pakistani immigrant and has to confront racism in his small English town. There's also an issue about the inheritance of an antique gun after his brother dies. Highly recommended! The tone is really enjoyable and the characters are well developed.

The Guernsey Literary and Potato Peel Pie Society: This is an epistolary novel about the effects of World War II on the island of Guernsey, which was occupied by the Germans, and a little bit of London too. Letters between Juliet/Izzy, a journalist, and the residents of Guernsey tell the story of the German occupation and how the residents of Guernsey used their literary society and friendship to overcome those hardships. Eventually Juliet/Izzy decides to write a book about Guernsey island and moves there for several months. The characters are
wonderful, the tone is funny, and it reminded me a lot of Jane Austen's writing, which is
good because she's my favorite author :). Highly recommended! The story and characters are really wonderful.

The Georgia Nicholson Diaries: This is a series of ten books by a comedian that are the diary of a teenager, and they are hilarious! I think they are meant to be read by adults who remember being that ridiculous, or who enjoy reading about how ridiculous teenagers can be, but they are also very popular with teenagers, and I don't think they get that. Oh well. Angus, Thongs, and Full-Frontal Snogging is the first book and shares Georgia's search for a sex god boyfriend, and her struggles with her parents and much younger sister. Hilarious, and very good for a light read.

I'll add that I'm really not a fan of dramatic novels and prefer stories that are mostly nice and not bloody or traumatic. My life is tough enough, and I don't need to read things that are unpleasant.

Which is perhaps why I wasn't so much a fan of the novel Faithful Place. This was an Amazon recommendation, and I do like mysteries along the lines of Dan Brown and Agatha Christie, so I thought, why not try this one. It's about a police officer who hasn't had contact with his family for about 20 years when he was supposed to elope with his girlfriend, but she never showed and so he ran away on his own. His girlfriend's suitcase is found, and soon after her body, and he's drawn back into the world of lower class Dublin while trying to solve this case. The story was sort of interesting, but I had it figured out about half way through the book, and the way it was written wasn't terribly interesting. I'll give it a half recommendation, if this is your kind of book.

Remarkable Creatures:. I haven't finished this one yet, but I'm really enjoying it. It's set in the 19th century in Lyme Regis, England (another Austen tie in!) and deals with the relationship between two female fossil hunters. It's set in the first half of the 19th century so evolution hasn't been proposed yet, but these fossil hunters find fossils that don't fit animals that are alive today, so where did they come from? One becomes a very famous fossil hunter, and their friendship and work is played out against the background of 19th century opinions about women working and taking credit for discoveries like these fossils. Highly recommended! Makes me want to read more Tracy Chevalier. I enjoyed The Girl with the Pearl Earring and The Lady and the Unicorn (and seeing the tapestries at the Musee Cluny) so I'll probably add more of her books to my "to read" list.

Last one for today! My cousin was an extra in the movie Flipped, and after seeing the back of her head and finding the movie cute, I decided to read the book, and really liked it. The story is almost exactly the same as it is in the movie. It alternates points of view of the same events as experienced by a boy and a girl who are neighbors. The girl is in love with the boy for years, but he finds her embarrassing and so tries to ignore her. It's about the things she does to impress him and how their relationship changes over the years. Very well written and a very cute story!

Hope you find something here that interests you, and if you have read any of these, tell me what you read and how you liked it!

Other things to do in and around Traverse City

There are tons of attractions in the Traverse City area, which I'll say is the top left corner of the lower peninsula, or the tip of your left pinky from the back of your hand.  There are lots of cute towns with various shopping and eating places, islands to visit, and lots of outdoor activities.  For example, there's Sleeping Bear Dunes, a park featuring 400 foot tall sand dunes, Old Mission Peninsula is fun to drive around and has some wineries and historic attractions, and there are five lighthouses in the area to visit.  Did you know that Michigan has the most lighthouses of any state?  There are lots of cruises you can take in the Grand Traverse Bay, parasailing, you can rent boats, there are lots of golf courses... and there are a few casinos too, if that's your thing.  The visitor's bureau has a pretty good website of things to do in the area, but there are of course many more things than they list!

This year we visited Leland and it's Fishtown historic district for the first time.  Fishtown has these old, decrepit looking buildings that are what would have been there 100 years ago.

 
(Not my photo, because I didn't take many this year, but I went here!  Lifted from the site above)

Today they're home to some souvenir shops and a couple of food places.  An amazing smoked fish store, with fantastic prices because it's fresh and local, and the cheese shop in the photo above with really good cheeses.  I really enjoyed the goat gouda.  The town itself is very small and very cute with galleries and shops.  You can even charter boats and go fishing on Lake Michigan, for those who like to fish!

And of course, the big thing to do anywhere you visit is eat!  Since this is the Cherry Capital (Michigan produces 75% of American tart cherries and this is where they are grown) anything cherry is good to eat, and they are everywhere.  Dried, covered in yogurt or chocolate, worked into sauces, in pies... there's even the huge National Cherry Festival on the 4th of July weekend.  I've already blabbed about the wonderful ice cream at Moomers, so no need to repeat that.  Restaurants that I recommend are:

Thai Cafe: I know it sounds ridiculous to recommend a Thai restaurant in northern Michigan, but this is a really good restaurant!  The spices are very well done, the flavors are wonderful, I've liked everything I've had from there. And they give you huge portions.

Firefly: a really interesting place because they have large dishes but you can also do a tapas-type dinner and order a bunch of small plates to share.  I've been twice with a friend of mine who has had a great time working up north for like five or six summers, and we've done the tapas dinner thing both times.  Loved everything!  The nachos really stand out in my mind.    

North Peak Brewing Company: they do in fact brew their own beer, which I didn't order because I don't really like beer, but my brother did, and he liked some of them.  The fish and chips are great, the pretzel crusted walleye is also very good, and the veggie nachos are great too.  I love nachos and am quite the critic, so that's a real complement.

Amical: this was a new visit this year and a huge success!  Everything was wonderful, and the star was this enormous tomato soup en croute (with pastry on top) - seriously, the soup could have been a dinner all on it's own because it was so big, and it was delicious!  I didn't finish it though because I had a whitefish coming for dinner, which was also wonderful.

We also ate at Poppycocks and I thought the food was very good, but they don't take reservations, so we had to wait around for a while, and there was an issue with them not having a lot of vegan options for my sister despite saying they did, but the food we had was good.  The sun-dried tomato polenta stack was really tasty, and the salmon and whitefish were both very good.

So, if you go to visit the Traverse City area, there are lots of things to do, and you should visit!  In the winter there's skiing, so it's a four season destination.  Please do visit, Michigan could use the money!

Pleasanton Bakery and The Village

One of the best bakeries I've ever been to is the Pleasanton Brick Oven Bakery.  Their breads are fantastic!  My favorites are the Tomato Parmesan and the Cherry Chocolate, but they only make certain breads on certain days, and we weren't there the Cherry Chocolate day, so I missed out this year!  All of their breads are wonderful.  I haven't had any of their cookies or other sweet treats, but I'm sure they are good too.

                                                        The Pleasanton Bakery

The bakery is located in this place called The Village, or Grand Traverse Commons, which used to be a mental hospital, and the other buildings in the area look like it.  The Pleasanton building used to be a fire department building, and this is the rest of it.

It looks a lot less creepy in these photos because it was sunny when I took them, and because I don't have a picture of the front of the building, which is the creepiest looking part.  The hospital has been redone and now has shops and restaurants on the bottom floors, but on the top floors they're putting in apartments and offices. 

I find this redo of an old mental hospital strange and creepy because mental hospitals were not fun places to be.  The patients were usually mistreated and punished for behavior that was beyond their control, and they often lived in very bad conditions.  It just makes me a little on edge to be in the building and know how miserable the poor patients must have been.

But luckily the Pleasanton bakery isn't located inside the old hospital, so I have no problem going there to pick up fresh bread! 

Wine Tours

I'm going to start off by telling you guys that my internet issues weren't over the last time I posted!  We lost power on Monday night.  What are the odds?  Luckily it was only out for about five hours, but really!  The internet gods must be angry with me, but I love the internet and don't know what I did to hurt their feelings!  In any case, hopefully there won't be any more issues with my internet!

Back to my trip up north.  The Traverse City area is actually on the same latitude as Bordeaux, so there are several different wineries, but the quality of most of it isn't as good as the stuff from Bordeaux.  They do make excellent rieslings though, and since my favorite kind of wine is sweet white wine, I indulged!  I'm not as keen on red wine (of course I avoid the wine that's supposed to be good for you!) and the ones up north aren't that good anyway, so I only sampled whites, champagnes (okay, sparkling wines, I know that champagne is technically only from a certain area of France) and a rose or two.

Our first stop was Chateau Chantal, which has my favorite riesling, the Select Harvest Riesling (not sure why it's labelled as Late Harvest on that page).  They also have a wonderful sparkling cherry wine and cherry wine without bubbles that are delicious, and very specific to the area since it is the cherry capital.  The best part about visiting Chateau Chantal is the wonderful location.  It's on a hill on the Old Mission Peninsula which divides Grand Traverse Bay in half and you can see both the East and West Bay.

   
                                                                     The East Bay

                                                               The West Bay

Our next stop was Brys, which was not as good as Chantal, but they had some nice wines.  We also stopped at Left Foot Charley, which is a newer winery, and they specialize in white wines.  They mostly weren't sweet enough for me, but they were good.

Our last stop was the Grand Traverse Distillery, which makes vodka and whiskey.  We took a tour, which lasted a little bit too long for me, so I guess I must be a little ADD these days.  They make an extremely pure product with very specific steps, like what type of barrel they use and how many times they drain the water.  It was interesting to learn about how into the process they are.  Their products have won a lot of awards too, and they haven't been around very long, so that's great for them.  The tasting was kind of funny because you got these mini-shot glasses to try the drink with, and it was me, my parents, and my brother who just turned 21, having a shot party.  The problem for me was that the vodka was just way too strongly alcoholic to have plain without a mixer, so I had a sip and gave the rest to my brother.  It was very good though, and we bought one of each of their offerings.

Winery tours and tastings are really fun, and definitely an important part of your trip to Traverse City!  Don't expect the best wines you've ever tasted, but you'll definitely find some good ones.        

No internet!

On Friday morning we left for Pennsylvania to visit my aunt, uncle, cousin and his fiancee. We were very surprised that the hotel we stayed at this weekend, despite advertising that it was wireless, only had wireless in the lobby and was wired in the room. Not a problem if you bring your laptop, but for my birthday my parents bought me an iPad, so I just took that with me, and it doesn't have an access for wired Internet! I know I could have gone to the lobby and used that wireless, or used my mom's laptop, but I was lazy and we weren't in the room that much because we were visiting, so I was WITHOUT INTERNET for the weekend! It was kind of a big deal, but luckily for a very short time. Now I'm home and can spend the entire rest of the day online. Ha. Although, to be perfectly honest, since I don't have anything pressing like classes to do online, it really wasn't that huge of a deal because I had other things and people to occupy my time. So tomorrow we'll be back to our regularly scheduled program of Traverse City vacation recounting. Hope you all had Internet-filled weekends!

Moomers!

Moomers is an award winning ice creamery outside of Traverse City.  Good Morning America awarded them the best ice cream in Americ award a few years ago for their signature flavor, Cherries Moobilee, which is cherry flavored ice cream with sweet and tart cherries, fudge swirl, and brownie pieces.  YUM!

The problem with Moomers is that it is only available in a few stores up near Traverse City, in their adorable store that's abot 20 minutes outside of town, or you can order it online.  This year a big change was that you can buy pints at Tom's, the local chain grocery store.  So we bought some of them to start off out trip!  We got grasshopper, mint oreo, something chocolate, and coconut almond delight, which isn't my favorite because I don't like nuts.  But everything else was delicious!  We also got cinnamon bun at some point, I think it must have been then.  The next night we went out for ice ream and got lots different flavors!  Black raspberry, mango, lemon custard, lemon sorbet with raspberry sauce, chocolate peanut butter chunk, and chocolate raspberry chunk.  We all had fresh bowls, and some got multiple flavors, which is why we had so much ice cream!  I didn't try the two lemon flavors because my brother and sister carry germs, but the black raspberry and mango were fantastic, the chocolate peanut butter chunk is a favorite from last year, and the chocolate raspberty was mine, and was fantastic!  Chocolate ice cream with a raspberry swirl and raspberry filled chocolate cups.  Amazing!  My mom and I went back the days before we left and got some pints and quarts to indulge in that evening, and to take back with us.  We got chocolate peanut better chuunk, cherries moobilee, coconut almost delight, toasted coconut (for those who don't like nuts), raspberry truffle (just like the chocolate raspberry but with vanilla ice cream), and ummmm..... somethng else.  I think it was amaretto cherry.

Think we got enough ice cream??!!!!

The great part about Moomers is that their ice cream is the perfect amount of creamy and sweet, not too much of either, and the flavors are very authentic, not at all fake or artificially flavored.  It's a real treat!

I was too busy eating the ice cream to take any pictures of it, but here are some pictures of Moomers!

Back from break!

I've been back since Friday, just took a while to upload my pictures so I could make some posts.  I really didn't take that many pictures this year because it was so ridiculously hot out, I just couldn't spend the extra time in the sun!

Our condo was fantastic again.  Same model as last year, but on the second floor rather than the third floor.  

Here are pictures of the view, but for some reason that I don't know and find frustrating, Blogger has rotated some of them.  So you can either crane your neck to the side and peek at them that way, or just look at the ones that are right side up.  Or if you know how to fix this problem, please let me know!

Looking out on the East Bay towards Old Mission Peninsula

 

Looking back towards mainland Michigan

There are lots of boats in the Grand Traverse Bay, but fewer on the East Bay than the West Bay

Some of condos are owned, and the dock is for boats that belong to owners.  The seats on the beach are up for grabs.

Having fun in Lake Michigan!  The lake is probably the best way to escape the heat and humidity.

Stay tuned for more sideways pictures of Traverse City!

Great birthday present!

I'm getting discharged today!  Unfortunately we won't be out on time for our Harry Potter tickets, but I have a feeling it will be in theaters for a while, and we still get to leave on Sunday for our trip to Traverse City!

On Wednesday and Thursday I had sedated procedures, so I wasn't up for much computer time.  But I'm feeling better since starting the antibiotics and anti fungal.  I can breathe more deeply, I don't feel as out of breath when I'm doing things, so that's all good news.  I don't have to wear oxygen all the time anymore either.  That was one of my guidelines for getting discharged, I had to be off oxygen, and so I am.  I'll still be on some antibiotics and an anti fungal, but at least I'll be out and able to enjoy myself!

Today we'll probably be running around doing shopping for things we'll need to take up north with us.  We'll be staying in a condo on the beach with a kitchen so we bring some snacks and things, but they have fantastic food up there too.  Moomer's ice cream, the Pleasantown bakery, Black Star Farms raclette cheese and French pastries (the best croissants I've had outside of France!), and of course the wineries!  So today won't be so birthday focused, but that's okay, I have a great dinner planned for tonight.  Tuna steaks, smashed potatoes, roasted potatoes (my dad's favorite, if we don't have them it isn't Shabbat), pea pods, and for dessert, coconut cheesecake! 

I wonder if they pushed to get me out of here because the hospital is full and they need my room, or because they really like me and wanted to get me out for my birthday and vacation.  Probably both!  I am pretty popular among the medical folks, if that doesn't sound too ridiculous to say out loud :)

Hope everyone has a  wonderful day!

Crazy from relief!

I'm taking a steroid every other day to help control my GVHD, and this past week I was having very strange, not comfortable symptoms the day after not taking the steroids.  On Saturday evening it was really bad, so on Monday I had my photopheresis appointment and I asked them to let my doctor know.  He called back, I explained my symptoms, and he thought it sounded like the problem was the every-other-day-steroid thing and changed my dose.  One of my problems has been shortness of breath, and I noticed on Monday evening that walking around my house twice was getting me out of breath.  This was no good.  Of course this made me start freaking out about my lungs.  It could be GVHD, could be another recurrence, could be lots of different bad things!  And we're leaving for a week in northern Michigan on Sunday, what if things get worse while we're there with health care that's nowhere near as good as it is down here!!!! 

So I called first thing this morning and left a message that I wanted to be seen before I left.  Got a call back from a nurse in clinic who said the only appointment she could get me was Friday morning.  One, I don't want to come in on my birthday, and two, that's not soon enough.  So I emailed my doctor asking if he could see me earlier.  He has clinic today, but called me back soon after I sent the email, we discussed things, and he said come in for a chest x-ray and then wait around until he's seen it and can tell us what the deal is.

We ran to the hospital as quickly as we could, got the x-ray, and then went upstairs to clinic and waited.  I'm freaking out because I'm so worried about the results. My doctor came out looking for us pretty soon after we got there, missed us as first but eventually our waving and calling brought him over.  He says "you have pneumonia."  And then we got my pulse ox and blood pressure and made a plan for treatment.

PNEUMONIA!  I'm so happy!!!!  That's so much better than a recurrence or GHVD!  I mean, it isn't good, but it's so much better than the other things I was worried about!  I feel so much more calm and less anxious than I did before.  What a relief!  I've been telling everyone how happy I am to have pneumonia!

The next few days will be kind of annoying, but I have a sick liking of the hospital and nurses on the BMT ward.  Yes, I was admitted as an inpatient.  I already started a broad spectrum antibiotic and an antifungal, and got a chest CT.  Tomorrow I'll be getting a bronchioscope (I think that's what it's called, can't remember) and a lumbar puncture with chemo that I was already scheduled for, which means I'll be pretty out of it all day because they are both sedated procedures. 

So the hope is that I'll be out of here on Friday so I can celebrate my birthday!  We have tickets to see the new Harry Potter movie at 1 PM (no, I do not want to see it at midnight, I like to sleep, thank you very much) and I have already spent my birthday in the hospital, and it wasn't that fun, so I'd rather be out.  I'm sure you all understand where I'm coming from :)  I at least hope I get out by Sunday so we can still go up north for next week.  Fingers crossed!  I'm not sure what the guidelines will be for letting me out but I'm guessing it will have to do with my pulse ox and what kind of pneumonia they decide I have and what my treatment should be.  I'll keep you all updated.  But not tomorrow, because I'll be sleeping most of the day :)

I'M SO HAPPY!!!!!!!!!!  YAY PNEUMONIA!!!!

(No, I wasn't admitted to the psych ward, but yeah, I'm a little nuts today because I'm so relieved!)   

Shoes

I have huge feet.  It's kind of embarrassing, actually.  I wear a size 11, 42 in European sizes!  I never found any shoes in France that fit, and even in the US it's a problem. 

Because of my limited mobility, I'm supposed to be wearing shoes that have thick soles and are supportive, and if I wear sandals they have to have straps over my feet and around my ankle.  Guys, those shoes are all UGLY!  I keep looking and hoping to find something useful, and I found a pair that's... okay.  Less bad than the others, and not too terrible.  I want a pair of sandals for our trip to Traverse City, so I decided to buy them. 

The sandals came yesterday.  My other foot problem is that they are very skinny and sometimes I need to buy narrow width.  These ones were only available in an 11 medium.  So I tried them on, and they're too big!  They're too wide, they don't fasten tightly enough, and I think they might actually be a little long.  That isn't usually a problem I have with shoes!

I'm not sure if ordering a 10 narrow will help, but I'm thinking about it.  I think it's funny that this is what led me to find shoes that are too big!

Pie Pictures

First off, a big thank you for all the support on my last post.  It really means a lot to me, and I can never express fully how much I appreciate it.  Thank you.

In other news, today marks seven years since I was first diagnosed.  I'm still here, so screw you cancer!

In food news, we had a great barbeque for the 4th of July, and a wonderful dessert!  The cherries finally appeared last week so we had cherry pie with all the fixings.  Michigan is the #1 producer of sour cherries in the US, and sour cherries are the ones you use in cherry pie.  The Cherry Capital is Traverse City, located on the tip of the pinky finger on the back of your left hand.  I hope everyone knows that the lower peninsula of Michigan is shaped like a mitten, which is great for pointing out locations and fun for jokes.  We'll be up there for a week starting the Sunday after my birthday, the 17th, and I can't wait!  We were there last summer around the same time and had a great vacation and I think this year will be just as nice. 

Here are some pie pictures.  My mom is a fantastic cook, and the pie was wonderful!

                             

I kept a secret from you all

Blogger friends, I have been keeping a secret from you for the past month-ish.  I didn't say anything because I had a lot of people to tell, and was very busy going to appointments almost every day.

They found more leukemia, in my cervical spinal cord and in my spinal fluid.

The good news: that's the only place they found any leukemia.  My bone marrow and gut were clear.

The bad news: I had to get 3 MRIs, one lumbar puncture (or spinal tap, which is when they go into your spinal fluid with a needle), a PET/CT, a regular CT, and an EMG, which is this weird neurological test where they use surface and intramuscular electrodes to measure muscle function.  OMG, I am so sick of tests!

For treatment I had twelve days of radiation, which finished a couple of weeks ago, and it was highly successful.  First of all it only took like five minutes, and I'm a fan of quick medical procedures, especially when they take place every weekday for twelve days.  Secondly, it has made a huge difference in the way I feel and get around.  I've mentioned that I've been having mobility problems, and getting the radiation has improved all of them.  I'm not back to normal yet, but I've regained a lot of strength and function, which is so wonderful and encouraging.  It's great to feel better every day instead of worse.  The past six months have been the hardest I've passed in the seven years that I've been dealing with leukemia (July 6th will mark seven years snce I was first diagnosed).  The physical limitations have been the worst thing I've had to deal with because they limit the things I can do, and I've never really had to deal with that before, certainly not for this amount of time and when I've felt well.  It's just so amazing to be able to do things for myself again and be a little independent.  I still have a ways to go, but at least I'm advancing.

For the rest of my treatment I'm getting intrathecal chemotherapy again.  I got it last year too - it's chemo injected directly into the spinal fluid.  This is basically a good thing for me.  I don't get side effects (knock on wood!) and I know the group of people who give it pretty well since I've been there a lot before, so I'm pretty relaxed about getting what is a pretty freaky sounding procedure.  I had my first session two weeks ago and my second on Wednesday.  They draw some fluid and send it to the lab each time to be tested for leukemia, and the results from Wednesday showed no leukemia already from the treatment I got two weeks ago!  I'll keep getting the chemo every two weeks for several more sessions, not sure how many exactly but I think my doctor will tell me on Tuesday when I see him next.

So despite the fact that there was some bad news, the most recent news is all good.  I'm feeling better, the leukemia is out of my spinal fluid, and I'm down to doctor's appointments every two weeks instead of every week.  I' really glad that I decided to defer the master's program I was accepted to until next year because it would have started last week and I would have had to drop it.  I'm also taking more time to complete the last two prerequisite classes that I would have had to finish before the start of the master's program because I just need a break.  Cancer gives you all kinds of good excuses to get out of doing things.  Hahaha.

Thank you all for sticking by me through this crappy cancer crap.  I feel very lucky to have so many wonderful people as part of my life, and it only says good things about you that you continue to support me.  Thank you, thank you, thank you.

New Post

I really don't like it when people stop updating their blogs very often, and I know that since November the most times I've posted in a given month is five.  So, my summer resolution will be to improve that number!

Unfortunately, my life is pretty boring and I don't have that much to write about!  Unless you enjoy hearing about my twice weekly physical therapy appointments.  I'm doing these 80s style exercises with steps up and down, and they're quite challenging.  Keep in mind, I can't get out of low chairs by myself right now and need a hand going upstairs too, so it's not like they're working me that hard, but I'm usually pretty tired afterwards.  I've gotten so lazy that even though I know I need to do this stuff, I really don't want to!  Can't I just magically be normally strong again?

On the plus side, no matter how much I eat I am not gaining any weight!  I'm eating tons of sweets, my mom keeps baking for me, and it's summer so there's ice cream, which we all know is my favorite, and my weight is stable and the lowest I ever remember it being.  I'm not underweight, although I could stand to gain a few pounds of muscle and strength, but hey, no complaints here at the ability to eat whatever I want and not gain any weight!  I probably just jinxed myself and will gain 20 pounds in the next month, but for now everything is good.

Sorry, that was a super annoying paragraph.  Will you forgive me for being annoying if I tell you that the steroids I have to take right now to keep the GVHD under control affect the way insulin processes sugars so I have to take my glucose and give myself insulin shots?  Here's my secret though: I usually forget to take my glucose.  But when I remember, the glucose level is okay and I don't have to take any insulin.  Maybe my horrible specialist in France wasn't so wrong when he said I was a non-compliant patient.  Ha!  He wishes he were right about something!

Hope everyone is enjoying their weekend! 

P.S. This was all meant to be somewhat amusing, so don't take it too seriously.  But if I screwed up and it wasn't funny at all, do let me know, and I'll work on my style :)

Hair and Happy Father's Day

Last weekend I had a revelation.  The last time I had a full head of hair was in December of 2009, before my transplant.  I've mentioned a few times here that about a third of my hair grew back, and we were a little unsure as to why it wasn't totally returning, if it was chemo or GVHD.  It usually takes 2-3 months for hair to fully regrow after chemo, so as the months went by I was pretty disappointed to not have my own hair, and I was using Rogaine for Men to try to make it grow more.  Baldness is the number one physical mark of being a cancer patient, and you just want it gone.  I got a couple of wigs and wore them occasionally, but it's been a long time since I dressed up or put on a wig because I've been pretty busy with treatments and being weak and not doing a lot.

Last weekend it all of a sudden occurred to me that I don't really care if my natural hair ever grows back.  It's probably been wiped out by graft versus host disease over the past 18 months.  GVHD, which is the reaction of the donor cells against my cells, can cause joint, skin, liver, eye, and hair issues (among many, many others!).  I realized on Saturday that my hair has been the victim of GVHD and is gone forever, and it really wasn't a big deal.  I was surprised when I reread the entry I linked to above because I was so sad at that time at not having my own hair, and my attitude now is so different.

Hair is such a complicated issue when you're dealing with cancer.  Losing it is a very clear symbol of your illness, and it takes a while to grow back to your original style after you've finished treatment; it can take a year or more depending on your hair.  Cancer makes you feel pretty unattractive and being bald, especially for women, makes you feel even uglier because it's so abnormal.  Everything else in your life changes so much, and you don't even look like yourself anymore.  You have to come to the realization that if you need to lose your hair in order to live, that's okay.  I am really lucky because my dad has been bald as long as I can remember and always been very cool about it, so the fact that I am bald has never been a problem for me, just the fact that cancer made me bald, if that makes sense.     

So this week I wore the Aubrey wig almost every day, and it was great.  I felt less sick, more normal, and even kind of pretty!  I really like the Aubrey color and cut, and I got tons of compliments from everyone at the hospital.  I had never worn a wig there before so it was a new thing for everyone.  There's no point in wearing a wig to a cancer center, they're all bald anyway!  You aren't fooling anyone!

Anyway, so there you have it.  I'll be a red head until I decide to switch wigs.  It's really liberating to have come to terms with this and be so comfortable with it.  Look at how much easier my life is.  I only have to wash the wig every 8-12 wears, it's easy to style, takes 30 seconds to put on in the morning... life is good!

A few words about my dad, since it's Father's Day and he's such an important part of my life.  My dad and I are very similar, and we've always gotten along really well.  He'll do things to help you without being asked, just by anticipating what you might need, and he's such a loving, caring guy, which you can tell by all of his actions.  He's also really funny and has a list of reasons why being bald is great.  Saving time and money are of course the most important reasons, but don't forget that if you're being chased by the police you can hide out in the melon section at the grocery store.  Hahaha!

Thanks Dad, for being such a great guy, and Happy Father's Day to everyone else out there.
               

Dear Weather

Dear Weather,

I don't know if the crazy weather we've had this year is due to global warming or weird weather patterns like El Nino or something, but I am not happy and I want a change!  We went through a very cool, wet, cloudy few months and didn't have any leaves on the trees until the very end of April, when it snowed too just to make sure we didn't miss winter yet.  In May we finally had a couple of days when nice temperatures and sunshine were mixed in with the rain and clouds and the cool temperatures and I really enjoyed the five days we had that were like that.  Then all of a sudden you throw this 100 degree, high humidity junk at us and we just have to welcome a horribly hot and humid summer into our lives!  Whatever happened to spring?  And why is summer going to be so nasty?  Because if this is a preview of what we're looking forward to for the next few months, it's no good at all!  Please, take pity on your poor victims and let us pass a summer with much less humidity and heat than we've had the past week.  I always recycle, I never litter, and I like nature and being outside, I'm an eco-friendly kind of girl!  I'd even take clouds and rain rather than this!  Well, not for the whole summer, but a few days a week I could put up with it.  I did live in northern France for two years, so I know how to handle rain and clouds.

Love and best wishes for a healthier tomorrow without global warming making you nuts,
Soleil

I had such a wonderful time with my visitor.  We hadn't seen each other in about a year, so it was great to reconnect in person.  I can't tell you guys enough how wonderful it is to have good friends, especially when you're going through the crap that I deal with all the time and you have people who tell you to complan to them about it, and who don't mind that you can't get out and do a lot because of mobility issues.  It was a wonderful few days and I hope she had as good a time as I did!

I had a lot of margaritas this week!  We tried a few different recipes at home while my friend was visiting, and yesterday my baby cousin had his first birthday party, at which margaritas were available (I assume for adults only, but in my family you never know!  Haha).  One was the full calorie mix, and one was the reduced calorie Bethenny Frankel kind.  Reduced calorie basically meant no sugar, so it wasn't a big hit with me.  I prefer the homemade kind with fresh ingredients.  So next time you invite me over for a margarita party, have fresh limes around.   

Visits!

Having a great time with my visitor from California.  Today it's hot and humid an the only day this week when it won't be raining, but it's also sunny and gorgeous out, which is quite the change for us!  Yay sunshine!

Four Topics

Number One
I don't want a boyfriend.  Not that anyone has asked or that I'm going out and meeting people these days, but I was thinking about it the other day because of the book I'm reading and I realized that the idea of a boyfriend is very unexciting.  There are several possible reasons for this.  One, I'm a psychopathic loner.  Two, I have too much else going on and no time to care about someone else that much.  Three, I don't have any hormones and so no desire for any romance.  Two and three are definitely true, and hopefully one isn't :)

Number Two
I'm having trouble typing and doing fine motor skills because of weakness and numbness in my right hand and arm.  And I get these terrible hand and arm cramps.

Number Three
I decided to defer my entry into a masters in education with elementary teaching certification program until next year.  I'm too weak to run around after kids, and since I'm having mobility problems it would be difficult to get around.  The woman who is in charge of the program has been great and very helpful to me, and even said I could take a class in the fall if I'm up to it.  I'm actually relieved that I won't have to start a full schedule of classes at the end of June.  It also gives me more time to complete the two online prerequisite classes that I haven't finished yet.  Normally I'd have six months to complete them, so in July I have to finish, but if I were doing the masters they'd have to be done before that started, so by June 20th I'd have to be finished.  Whew!  I need a break!

Number Four
It's still raining!  The amount of rain we've had this spring is unbelievable.  I thought that living in the north of France had made me used to the rain, but it never rained this heavily for this long.  In Michigan we luckily haven't had all the problems with tornadoes and flooding that other parts of the country have had, but it's been a really crazy spring.  The temperature was pretty cool until a couple of weeks ago, since then it's gone back and forth between the 60s and 80s every few days, and the rain has been almost constant.  I wouldn't be surprised if it snowed again this month, to be honest!  It's been nuts this year.  I'm kind of enjoying it though, as strange as that is!  I'm rarely outside and I'm not driving so I don't have to deal with the bad parts of the crazy weather and can look out the window and exclaim about how rainy it is or how cold it is.  Life is luxurious when you have limited mobility :)  

Movie Shooting!

Our house wasn't chosen for the movie they're shooting in town right now, but another one in the neighborhood was, so my mom and I spent a few hours there last Tuesday watching the goings-on and chatting with neighbors.  It sounds like these are not the scenes they wanted to shoot at our house, and this family was contacted a couple of months before we were about their home being used in the film, so no jealousy issues.  And after watching what went on during the shoot, I'm glad they decided not to use our house.  They drag stuff in and out, make holes in your yard, there are tons of people all over, and they kick you out of your house to change it and use your things.  There weren't many people watching, just the people who own the house they were using and a few people from the neighborhood, and a couple of random people from around town, so maybe 15 total.  That surprised me, I thought there would be a ton of people watching, but no, there weren't, and it was definitely better that way!

The "security" people, who I guess were there to keep us from running across the street or something. wouldn't let us take pictures of the outside of the house, which I didn't get at all.  I snuck a couple of pictures on my cell phone, but they're sideways and I have a new laptop and can't figure out how to use the photo editing software, so you won't get to see them, unless I figure it out.  Sorry guys.  I did get a picture with one of the stars though!  Which I also won't be posting, but it's a pretty good picture.  You can email me if you want to see it.

It was a fun experience to watch, but nothing really happened.  It was exciting when the stars arrived, in Cadillacs, and waved and came over to take pictures and sign autographs, but that was just for a few minutes.  Most of the time they were in the house filming, and we were just standing around trying to make conversation.  Michigan passed a tax credit bill a few years ago to entice movie studios to film here, so a few different movies have been in town, but they're reducing the tax cut because we're in so much debt, so the number of movies being filmed here is going to decrease.  But a bunch of the people who were there had been to other tapings around town, and they were really into being there and talking to whoever they could talk to, and knowing when the stars would be coming and leaving.  And it was my first celebrity siting, and I feel like everyone else in southeast Michigan has had a gazillion already!  It was a fun experience.  Then today when my mom and I were driving back from my appointment we saw the movie trucks again at a different house, so we'll have another opportunity to watch!   

I successfully shamed the medical students into being good doctors!

My session with the medical students went really well.  I felt good about the way it went from the reactions of the students, and afterward the feedback from the professors was fantastic.  I was also surprised by a $50 Visa gift card, which was totally unnecessary but very nice.

I spoke to first year medical students who are taking an infectious disease class right now, and my mom is one of the teachers, so the other professors have been hearing about my medical issues for the past almost seven years now.  They asked me to come in for their unit on immune suppressed patients and the issues they deal with.  My mom and I were on stage together to respond to their questions.  I was expecting them to ask more medically based questions, but the students really seemed to respond to the fact that we're all around the same age and asked some really great questions about dealing with being sick.  One asked what makes a good doctor, they wanted to know what I'll be pursuing a masters in, asked about my health insurance, the reaction of friends, how I entertain myself when I can't go out and do anything because of my immunosuppression, side effects of medications, etc.  The two questions that stood out to me because they were so personal were one about how I maintain a good attitude through this, and one about dating with cancer.  The attitude question, I tend to be a positive person and I also have a great support system.  Dating with cancer, well, that one is a little more complicated.  A lot of the time that I've been sick I was/am so concentrated on myself and what's happening in my life that it wouldn't be fair to a boyfriend, and I wouldn't be interested in having someone in my life anyway.  It's also hard to find someone who would put up with all of the medical visits and crap like that. 

I thought it was great that they were so interested in my life and how I deal with being sick rather than just asking about the medical stuff.  People who are interested in patients are the best doctors.  You want a doctor who cares about you as a person, not just someone who wants the paycheck a doctor gets.  I tried to impress on them the dehumanizing aspects of being a patient and how important the comportment of the care team is and what sort of behavior patients appreciate.  It seems like these students will make good doctors.  Several of them came up to me after the class was over to thank me for coming and speaking to them too, which was nice. 

Clearly I successfully brainwashed them into being good docs.  You can all thank me in another three or four years when they're residents :)

Just wanted to post something new

I think I'm going to leave the matzah background up for a little longer, even though Passover was finished on Monday night.  I already wrote about how much I like Passover as a holiday.  It';s a contest between Passover and Hanukkah for my favorite holiday.  I like the candles and the lights of Hanukkah, and the different dishes we use for Passover.  Clearly my priorities for picking favorite holidays are good and religious-based.  Haha.

I felt like writing but I don't really have anything to write about that I haven't already put on here.  The weather is a little warmer, but still totally cloudy and we're getting a lot of rain.  The new thing this week is that we finally have some leaves and flowers on the trees, and it's basically still March, rather than May.  I would like a little sun, please!  I have to say though, the fact that my physical ability is pretty limited, I'm kind of hoping the weather stays bad because I can't do much outside right now.  Sorry folks who live in Michigan, I'm being a little selfish.

I can't believe it's May already.  This year is going by so fast!  January seems like it was just a few days ago.  I can't believe I've had these physical problems for five months now.  I haven't walked up a staircase normally in five months.  Hopefully this physical therapy will work.

Hmmmm.... can't think of anything else to bore you guys with.  Oh, this week I'll be talking to first year medical students about being an immunosuppressed patient.  I'm hoping to traumatize them into being good doctors :)  Hahaha.  I'll fill you in.

Classes, weather, and tattoos

I finished one of my online classes this weekend, the educational psychology class that is a prerequisite for my masters program.  I'm relieved that my course load is down to only three classes now.  Another one, my statistics class, will be done in two weeks, so I'll be left with just two classes.  My least favorite ones out of the bunch, naturally.  They're both intro to literature classes.  One is kiddie lit and the other is adult lit.  I love to read and I always have, but something about analyzing literature just doesn't do it for me, or at least the way it's done in these classes doesn't do it for me.  In any case, I have to take them and finish them before the masters starts at the end of June (provided I'm physically well enough to be in the program) so I have to finish them.  If my grades aren't ass good as I would like them to be in either class, I have some excuses I can give about why I didn't do so well, right?  I think falling and cracking my head counts as an excuse!

The weather here is still really strange.  It's warmer and not snowing at least, but it's been raining almost constantly for the past week.  We've had a little bit of sun but otherwise it's been rainy, cloudy, windy, and just not like spring at all!  Some of the trees are budding, but we don't have any leaves out yet and the flowering trees haven't blossomed.  It's been a really, really bizarre spring.  I honestly can't remember it ever being like this before, and it's almost the end of April! 

My brother was home this weekend because his university gave them a few days off for Easter.  He had told us a month ago that he got a tattoo, and I honestly didn't believe him, but I saw it while he was here and yeah, it's real.  The ironic part is that it's a Hebrew prayer called the Shema that declares "Hear O Israel, the Lord our God, the Lord is one," and Jews aren't supposed to get tattoos.  It's banned according to the Torah - because you know, we Jews are really into allowing things, like eating ham.  Ha ha.  Yeah, Judaism is into not letting you do things.  Anyway, my sister is also a fan of tattoos, and she loves getting them.  She has at least six tattoos, and they're all pretty visible and colorful.  My brother's tattoo is hidden.  Personally, I am not a big fan of tattoos and I have never wanted one.  It's fine if someone else wants one and decorates their own body, I don't judge anyone based on their love of tattoos, but it is not for me.  I would probably choose something that I would hate a month later but be stuck with forever, and the idea of having a Tweety bird on my ankle at 80 years old is a little strange.  I wonder what the difference is between my siblings and me, or the rest of the world and me?  Tattoos are so popular now, and I just don't get why.  My brother and sister and I share DNA and have very different views about tattoos, and I know that both of my parents are even more anti-tattoo than I am.  Anyone else out there who doesn't like the idea of permanently inking something on their body, or with an explanation for why I feel like the only person in the world who doesn't want one of these?   

P.S. Tomorrow is the last day of Passover, and I wanted to have a little bit ofa Passover theme on here before the holiday was finished.  Enjoy the matzah background!

Snow day? Seriously? I think it's because of Passover.

It snowed in Michigan last night!  They predicted a total of 2-4 inches, and supposedly my town got close to 2 inches.  It's April 18th and it snowed 2 or more inches in my state guys!  They're predicting a high of 40 degrees Fahrenheit with some sun this afternoon so the snow should melt pretty quickly but then tomorrow a severe weather system is going to move in and we'll be getting lots of heavy rain and storms, but the snow will melt.  I like snow and love looking at it out the window, but it's weird to be looking out at snow on my grass in the middle of April!


Tonight is the first night of Passover, the holiday when Jews eat matzah and no leavened bread products.  I can't help thinking the weather is some kind of comment on the holiday, hahaha.  Personally I love Passover (or Pesach, in Hebrew) and it's my favorite holiday.  You're supposed to switch all of your dishes to dishes that have never touched leavened bread, and your diet changes quite a bit for the eight days of the holiday.  I like having the different dishes and food.  Sure, it's disappointing to not be able to eat pasta and bagels and things, but it only lasts a week and there are lots of other good things to eat instead.  


I could have titled this post "Why I'm Weird."  I like snow in April and I like not being able to eat leavened bread for a week.  There you go Blogland, I'm beyond strange!  Chag Pesach Sameach to those who are celebrating, and happy spring to those who don't have snow.

Tired of being sick

I'm so mad at myself for being such an idiot and falling two weeks ago.  I mean really, I should have just taken the curb cut/cross walk like a normal person instead of trying to push myself.  I have all these appointments now for platelet transfusions and follow up appointments.  I was starting to feel stronger and like things were going better since my brain relapse last December, and now I feel like I've taken several steps backwards.  I'm weaker, I'm behind on my online class work, I have less free time, and I'm upset with myself.  I do feel better than I did right after I fell, but being a neurologist's daughter I am of course worried about the skull fracture and the bleeding I had in my brain.  I know I should focus on the positive, the fact that I'm feeling better, but I am so tired of having problems!  I just want things to be "normal" - not having to worry excessively about my health, being able to do normal activities.  I'm not driving right now, I'm not even going up and down stairs by myself.  This is the least independent I've been the entire time I've had cancer and the most abnormal I've felt.  I hate it.  I just want to be able to go a week without seeing a doctor, being able to drive, being able to move normally and not having restricted mobility, problems getting upstairs, problems walking a lot.

Just complaining in this post.  Emotionally I'm doing okay, really I am, but sometimes you just have to get it off your chest and complain.  And there isn't much else going on in my life, so this is the topic I have to write about.  Hahaha. 

Seriously guys, I'm a wreck

First update will be about the potential movie star status of my house.  Looks like the movie decided to go with a non-Tudor style house, so they didn't pick ours.  I think that probably makes sense for the character of the professor who owns the house, but of course it's too bad they didn't choose our house!

The funnier news is that I've fallen three times over the past week.  The first time was just me being dumb and going backwards up stairs that I should have turned around to go back up.  This is my weakness guys, I don't have enough strength in my legs to hold up my whole body on just one leg.  So I fell backwards onto a landing and hit my head.  I had to go in to the ER and get a CT scan of my brain to make sure there wasn't any bleeding because my platelets, which clot your blood, have been low.  So that first trip was fine.  The second time I fell I was rushing down the stairs, slipped and fell on my butt.  I didn't go in for any special tests.

Then there was Tuesday afternoon.  I've been feeling stronger, and I was downtown with my mom while she went to the post office to mail a package to my brother, and I returned some books to the library.  Instead of going straight across the crosswalk with the curb cut, I cut diagonally across the road and tried to step up onto the curb.  My leg couldn't support my entire body, and I kind of fell into a squat, and then fell backwards and hit my head.  I cut it so I needed stitches too.  All of these very nice people came to help me, one of them called an ambulance, another let me lean against him so that I could sit up, and I called my mom to come over.  This was my first trip in an ambulance, which I guess is kind of amazing considering what I've been through over the past almost seven years since I was first diagnosed.  The police and the ambulance guys were super nice, and everyone in the ER was great too.  I really liked my nurse. 

So as it turns out, I fractured one of the bones in my skull, and my brain bled a little.  I needed stitches on the cuts on the back of my head too.  I'm sore from the fall so I'm taking pain meds, and they put me on all of these other medications that make me sleepy and/or dizzy/lightheaded.  So I'm having a little more trouble getting around these past few days!  I was in the hospital Tuesday through yesterday evening but I'm discharged now and will hopefully stay discharged.  I was supposed to be in a concert with my voice teacher's studio tomorrow evening, but I won't be able to because of the lightheaded/dizziness and difficulty getting around with these different medications I'm taking.  It's also getting in the way of my classes.  I was supposed to have all of this free time this week to get work done, but I was in the hospital and my brain definitely doesn't feel up to doing all of that work.

Anyway, that's what's happening here.  I'm doing well considering how I could be doing, but could definitely be doing better.  If this post sounds a little confused I'm sorry about that, I feel a little confused from all the medication side effects.  Thanks for sticking around to read my posts guys.

Probably not a movie star

So the guy from the movie company came to look at our house on Monday afternoon.  It was really interesting to hear what he had to say and see what he was looking at in our house.  First he sat down and talked with us for about a half hour, let us know what kinds of things we would have to put up with if they chose to use our house.  Sounds like it would be a pain in the neck!  He said that it would probably take about 15 days to do all the arranging and filming, and we would have to move out for that period of time.  One week on each end for changing the furniture, painting, etc.  They'd put us up in a hotel, but I don't know, living in a hotel for three weeks doesn't sound that great to me.  The biggest problem for us and them would be the fact that one of the scenes is supposed to be a dinner party.  Our house is strictly kosher, so anything they brought in would have to be marked on the package as kosher or from a kosher caterer.  That means no pig, the meat has to have been killed a certain way, no shellfish, no mixing of meat and milk, and some other requirements.  It would be a big pain for them to work around all of those requirements.  They do offer payment, $1000 a day that they work in the house, $500 for days they have their stuff here but aren't working.  When you think of how much they'd push up the electric bill, that probably isn't very much.

He also said that there is some possibility of having a background role - you know, the kind where you say "that's my right ear!"  Which would be fun, but I don't know if it would be worth the annoyance of not being in my house for three weeks.  Since I don't have many reasons to leave the house, being stuck in a hotel would be kind of annoying.  And the date they are thinking about filming is right before Memorial Day weekend, so we wouldn't be able to BBQ for the holiday.   

After he told us about the requirements, he went around the house and took pictures of every room.  I was a little embarrassed when he took pictures of my room because it's such a mess!  He liked our house though and said they'd get back to us within a few days if it seemed like it would work out for them.  We haven't heard anything back yet, and my guess is that with our kosher restrictions it would be too much of a pain for them to use our house.  But it's exciting that they thought about using it!  I'll let you guys know what they tell us.  It is kind of neat to think that our house could be in a movie!  Even though I'm pretty sure we'll say no, it's a fun thought.

Exciting News!

My house might be featured in a movie!

We found a note in our mailbox on Wednesday from a production company saying that they were looking at houses like ours to potentially use in two scenes in a film that they'll be shooting in this area.  It would be a professor's house and used for two party scenes.  They're coming out tomorrow afternoon to look at our house and see if it will work for what they need!

... which means we need to clean everything so that it looks halfway acceptable!

I'm not sure how I feel about our house being chosen for filming.  It might be a huge pain in the butt.  What if they make us move out for a week?  Or if the filming takes a really long time?  But it might be really fun too, and I might get to meet celebrities!  I guess we'll see what they say tomorrow.  I'll keep you posted!

Slipping away

I'd been planning to make a trip to France this spring, and now I don't know if I'll be able to because of all the classwork I have and my limited mobility.  I'm taking three, soon to be four, online classes before my masters starts at the end of June.  Two of the classes have definite end dates, but the other two can be completed over the course of six months.  Right now I'm not sure when I'll be done with them.  There's so much work for these classes!  They're only ten "units" but each unit is a lot of reading and answering of questions.  And they have final exams!  I should be buying tickets now so that I don't have to pay an arm and a leg, but I just don't know if I'll have time before the masters starts.

France is slowly slipping away from me.  The problem with having time to visit isn't going to get any better when I enroll in the masters and hopefully, eventually, get a real job.  It makes me sad.  I loved my time in France, but I love my time at home too.  I know if I visit for a couple of weeks it would be so hard to leave again, but if I were going back for an extended period of time, it would be hard to leave.  Not to mention the fact that I did not like my transplant specialist in Paris.  Going back for an extended period of time seems very unlikely.  Nothing is set in stone yet about my travel availability, but it looks pretty unlikely for this spring, and the longer it gets between visits, the less likely they become. 

Can I push pause on my classes for a couple of weeks and go to France?   Please?

First, the frustrating news.  My gvhd is going beserk, so to try and calm things down I've switched the topical cream I use, started a new oral drug, and will be getting an IV drug once a week for the next four weeks.  I'm still weak and am having trouble walking and getting up and down stairs, and I get pretty winded after minor excursions.  This makes it difficult for me to go out and do things and see people.  Blah blah blah, what else is new?

It's weird not having anything I really want to write about on my blog.  I've had it for what, almost four years now (I can't believe it's been so long!) and most of that time I've had tons of stuff to write about.  I guess online classes and trips to the hospital are not so interesting.  I'm tired of my own problems.  I need new ones. Anyone want to trade?

Online classes are about to get tougher to manage because my last class, a basic statistics class, will start in a couple of weeks.  It's only an eight week class, thank goodness, but I'm having trouble getting all my work done with just three classes!  I have assignments due every week and I know it's because the class is online and we aren't going in to see the professor in a classroom.  I wonder if professors love giving online classes because they don't have to see students at all, just grade their papers?  Who knows.  I also have to register for my masters class that will start at the end of June, file my residency paperwork...  In any case, good luck to me with all the work I have to do!

I think I'm the only person who isn't sick of the snow!  We got another couple of inches this week and a powdering every day this weekend, but the temperature has been above freezing so it's all melting during the day.  I guess that's good for commuters and such, but I think snow makes everything look so clean and pure and beautiful that I miss it when it melts.  We still have what, three weeks of winter left?  Hopefully we'll be able to fit in another snow storm!

Admitted!

I found out this week that I got admitted to the masters in education program I applied for!  I was really surprised to hear back so soon.  I wasn't expecting to hear anything until March, especially since I only turned my application in about a month ago.  I guess whatever I gave them was good enough!  Now I just have to prove that I'm a Michigan resident and fill out FAFSA forms...

I have to say though, I'm not that excited about being back in school.  All the work I have to do for my prereqs that I'm taking right now is really.... It's just a lot, a lot of work.  I assume my work load will be different in the masters program because they won't be online and because the focus will be on learning how to teach, not learning a subject.  If it isn't different though, it's going to be a really long year.

I'm still excited :)

Snow, GVHD, Classes

There's still not a lot going on here.  I have TONS of work to do for my online classes.  I think they give you more work than a normal university-level class would because there's no other way to evaluate if you understand the class or not.  I have something due every week!  And not just a little something, like long essays and forum discussions.  I haven't done the school thing in almost four years, so it's quite a shock! 

Then there's all the health stuff.  My GVHD is probably the worst it's ever been.  I'm covered in weird skin spots, and I'm worried that I'm getting it in my lungs, which would restrict my breathing.  I'm still not enough recovered from the weakness I developed when I was getting radiation and on very high dose steroids.  The weakness is in my legs.  Chairs have to be a certain height if I just stand up out of them, otherwise I have to use my arms to push myself out off the chair.  Stairs are ridiculous.  And there's the edema!  GVHD can make you retain fluid and I am retaining a ton in my legs, which also limits my mobility, or at least makes it harder to get around.  I'm so tired of being sick and having problems.  I really thought I would be done with this by now.  I'm 14 months out of my second transplant!

But I do love the snow!  I don't drive in it, so I have no reason to not like it.  I just look out the window and see how pretty it is in my subdivision.  It's all going to melt away over the next few days though because it's going to be warm!  You know, like 35 degrees instead of 2 like it's been the past couple of weeks.  I guess we'll take what we can get during the winter! 

So that's what's going on here these days.  Classes, GVHD and doctor's appointments, and snow.  Nothing exciting, but that's probably good :)

Odds 'n Ends

My head hurts.  I just took an exam for one of my classes that lasted three hours.  Yikes!  It's my own fault; I didn't study hard enough.  I could have taken four hours if I had needed it!

Classes are...going?  Good news is that I was able to drop two of them so now I am only taking four classes.  Lucky me, right?  Since I'm so late getting registered for everything, I've spent the last week just doing the assignments for this class that had the exam today (educational psychology) and am consequently behind in all my other classes.  I'll catch up, I think?  Luckily the other three classes are less date-oriented so I can do them at more of my own pace.  As long as I finish them by the middle of June I think I'll be okay.

So who is still excited about all the snow we're getting?!?!?!  I love snow.  I wish I could go out and play in the snow like kids do but I don't have snow pants.  Otherwise I would totally be there!  It helps that I'm not driving and don't have to go anywhere, I'm sure!  I can't believe how much snow we're getting this year.  On Tuesday and Wednesday we're supposed to get 7 to 12 inches.  Can't wait!

I haven't returned to any of my volunteer projects yet.  I tried to meet up with my literacy learner but she's even more flaky than I am, so that hasn't happened yet.  The classroom that I was volunteering in I think I'll return to a week from Monday.  It will depend on how my weakness is.  I'm still pretty weak, having trouble getting out of chairs and walking upstairs, and that isn't really conducive to working with kids.  Hopefully I'll feel up to it, and hopefully my learner will be ready to start up again1  Although to tell you the truth, I don't know how I'm going to have time for these two things plus school work plus doctor's appointments.  Fingers crossed that I can get time management under control! 

Sorry for another boring post.  I'm still getting back to normal from the brain thing and radiation.

For the masters program I'm applying for I'm going to have to take some classes this semester.  Everyone who applies for this program does because we didn't intend to be teachers when we were  in college, so we have to fulfill some reuirements before enrolling.  One of the classes that I have to take is a math class, so I picked a geometry class thinking it can't be that bad, and it's an online class so I can do it at my own convenience.  I started the class today, and boy was this a bad idea!  The textbook is terrible!  It's hardly even a textbook, it's just these horribly dry, badly written pieces on geometry.  Why anyone thought this would be a good book to use for a class is completely beyond me,  Why anyone would write a book like this is beyond me too!  I may have to find another math class, but I'm not sure I'll be able to.  And you guys know how I feel about math anyway!  Not my favorite subject.  We'll see what I can do but I don't know, doesn't look so great right now.

I had something else I wanted to write about but I totally forgot what it was.  Hmmmm.  Guess I'll post again when I remember it!

Jury Duty? Not so much

Unfortunately, jury duty did not go totally as planned.  I got there, was shown to the jury room, chit-chatted with the other jurors.... kept chit-chatting.... kept chit-chatting..... We were waiting for like an hour past the time we were supposed to be in the courtroom.  On Monday when they had selected us they kept talking about how it was important to be punctual because if the trial was longer than one day they would have trouble scheduling the second day!  Anyway, the judge finally came in and told us the defendant had settled that morning and told us the story of why he was on trial.  I guess he had been at a night club with his girlfriend, some other guy had asked her to dance, so he punched him.  He ended up with 1 months of probation and an anger management class that he'll have to take.

I'm glad or the defendant because he won't have any jail time, but disappointed that I won't get to serve on a jury or at least another year.  Like I said, I'm a total dork and think it would be really interesting!  I mean, I would hate for someone to go to jail because of me, but I love the idea of hearing all the evidence (or the evidence they allow in the courtroom, in any case) and judging for mysel what I think the correct answer is.  Oh well, hopeully there will be a next time!

Good news is that it gave me an extra day to work on my application for the masters program I'm applying for.  Did I mention that I'm already late with the application because of the radiation I had to get?  It was amazing to see what kind o shape my brain was in when I had a tumor in it.  My essays just did not make sense.  They were so bad that I was embarrassed!  Good thing I didn't turn them in on time!  The deadline was really just a recommendation, and I've been in touch with one of the women who is in charge of the program so she knows that I was sick (not that I relapsed, though she knows I had cancer) and she's been very understanding, so hopefully that won't hurt my chances.  The application was turned in last Friday.  Fingers crossed they let me in!

Someone's been bad about posting....

Hello!  Hope everyone is settling back into work and/or school now that they're back in session.

Things here have been fine.  I'm still recovering from treatment, i.e. I'm still pretty weak (stupid steroids) and trying to rebuild my strength.  I've been enrolling - errrr, trying to enroll is more like it - in the prereq classes I need for the masters in education that I'm hoping to be admitted to when I send in my application.  Which I am also still working on.  I told them I'd have it in by Friday, so I guess I'd better finish it by then!

I am LOVING the weather!  I love snow, I think it's gorgeous, it's fun to play in, and it makes everything seem right when you look out the window, like there isn't anything wrong in he world.  Sure, it's dangerous to drive in but you can usually avoid the idiots who don't slow down.  Although my town doesn't seem to have plowed the streets of my subdivision after yesterday's snow yet.  What's up wth that?

Aaaannnndddd, the most excitng news is I GOT SELECTED FOR JURY DUTY!  Guys, I am such a dork.  I have always wanted to serve on a jury.  Laugh all you want, but I think it's cool.  I got the letter calling me to a selection date when I was still not feeling so great so I had asked my doctor for a note to excuse me from jury duty, but then ether he forgot to write it or I forgot to pick it up, so I had no excuse for not being there.  It's the third-ish time I've been called.  The first time was after my first transplant so obviously I couldn't serve, the second time was in June on a date that I was out of town so I got a deferral, which was for Monday.  No idea why the deferral took so long.  I had forgotten all about my summons quite honestly and suddenly emembered over the weekend, luckily!  I'm pretty excited, even if it is a not so interesting case.  It's a misdemeanor asssault and battery charge.  There are actually only 6 jurors and one alternate.  I'm a little embarrassed to say that I didn' realize misdemeanor trials only have six jurors! 

The trial is tomorrow and should only last the day.  Wish me luck!  I'll report all the details after the trial.