On the road again!

This time to Traverse City, Michigan! For a whole week!


I took this picture from the top of the Grand Traverse Lighthouse waaayyyy up at the tip of the "pinky" when we were there three years ago.

Yes, Michigan is shaped like a mitten (the lower peninsula is, at least). Look it up on a map if you don't believe me! Michiganders are famous for using our hands to show you where we're from and where different cities in our fine state are located.

And I realized tonight that this will be the first week since the end of September that I don't have anything to scheduled at the hospital! (knock on wood) Of course if I were in town I would have had scans and appointments and things, but I am going away on vacation, so we put all of those off until next week. Another river crossed!

Hope you all have a good week, and we'll see if I'm motivated enough to post photos while I'm up there.

Happy birthday to me!

A bit of shameless self promotion, but it is kind of a big deal that I'm able to celebrate another birthday today! I'm very happy to make it to 26!


And of course, what kind of celebration would it be without a little ICE CREAM?


Hope all of you have wonderful days today!

July

July hasn't been the best month for me over the past six years. Here's a quick summary of why, with the rest of my cancer timeline:

July 6 2004 - diagnosed with Acute Myelogenous Leukemia

July 7 - admitted to the hospital. Port placed.

July 8 - first day of weeklong 7+3 induction chemo

July 15 - last day of chemo. 20th birthday. Party in the hospital, complete with balloons.

Rest of July - inpatient. One central line infection, antibiotics, collapsed veins, fun times. Remission.

September through January - weeklong inpatient chemo sessions each month, followed by two clinic visits plus blood and platelet transfusions a week

January 2005 through early July - back to school for second semester junior year

July 15th 2005 - 21st birthday. Had the appropriate amount of 21st birthday fun :D

July 18th 2005 - prompted by no concrete symptoms but just a general feeling of something being wrong I schedule a clinic visit. Decide to stick around for my blood draw results despite the fact that everyone told me I was fine. Platelets came back abnormally low. Had a bone marrow biopsy. I know I've relapsed (platelets don't drop that low for no reason) but I don't get the official results until...

July 22nd - results come back showing an early relapse.

I enter the hospital for another month in August to get salvage chemo. Have to get a transplant this time. Brother and sister don't match. In October I recieve the good news that they've found a match for me. Another relapse, but early enough that we decide to proceed with transplant. Move to Boston with my mom for transplant.

November 4th - transplant day, second birthday. Goes very well even though it was very hard. Return home to Michigan in March.

July 2006 - Live in dread the whole month that something terrible is going to happen. Paranoid searching of entire body every day for bruises, petechiae, anything. Miraculously nothing happens and I make it through the month.

Go back to finish up school in January 2007, graduate in May a year behind schedule. Thanks AP test scores, you gave me a semester's worth of credit and enabled graduation only a year late. Best $300 I ever spent!

July 2007 - my transplant buddy Tali passes away from severe GHVD. I'm fat and crazy from steroids.

September 2007 through July 2009 - move to France to teach English

And then you know the rest of the story - relapse in October, transplant in December, recovery since then, blah blah blah.

Nothing really terrible happened in July of 2008 or 2009, but I feel like I got away with something.

I have dreaded the arrival of July since my first relapse. It's a little more than just an unlucky coincidence to get cancer in the same month two times, and only a year apart! Plus my friend Tali passing away during July. That's three years out of four where really bad stuff happened during the month of July. So every year when July rolls around, I get pretty nervous. I worry about relapsing, I worry about my friends relapsing, I worry about anything else bad that might happen. I don't even want to celebrate my birthday because I'm afraid of attracting the evil eye. Don't get me wrong, I'm always very, very happy to pass another birthday, but Jews are a very superstitious people, so I was raised believing in the evil eye and the ability to attract bad luck to yourself, and it seemed better to quietly mark the day with myself rather than making a big deal of it. You know, let it pass under the radar.

July just makes me nervous.

This year my attitude is a little bit different. I feel like I should celebrate my birthday. I'm turning 26! That's amazing. Who knows how many birthdays I will have left to celebrate, first of all, and second of all, I've been beating off this very aggressive leukemia all year, I think it's a good time to celebrate life and living. I would like to do something nice for my birthday, but again, nothing too elaborate, just something enjoyable. I'm not totally sure what I'll do yet. My mom always makes a special birthday dinner and cake, and maybe we'll go to the zoo together during the day. I like the zoo.

But I still have this sinking feeling because it's July, and because I have PET and CT scans and a bone marrow biopsy coming up at the end of the month. I wish I had thought earlier to ask my doctor if I could schedule them a week later. I would be nervous about my upcoming tests no matter what, but because it's the dreaded month of July I'm more nervous than I would be otherwise. I have no reason to think there is anything wrong. My blood work looks good, I'm feeling good, I don't have any symptoms..... but I didn't before, either. The first time I relapsed everyone thought I was being paranoid, and when I relapsed in October everyone was shocked.

So, I don't know, when I think about the scans I get upset, when I think about celebrating my birthday the little voice in my head says "are you sure that's a good idea?" but when I think about not doing anything I feel like that's wrong because I should celebrate getting older. Man am I going to be happy to get gray hair and wrinkles!

I try to not think about any of this as much as possible. Nothing like avoidance and denial to improve your mental state! The scans are going to happen no matter what, so there's no point in worrying about them until I'm getting the results from my doctor the next day. Easier said than done!

Now to find a way to turn off my brain because once I start thinking about being nervous I can't stop thinking about it!

Fashion diapers and stories from the baldies

I absolutely love this commercial. I laugh every time I see it!

On TV they say "full of fashion" instead of "full of shit." I think full of fashion is much funnier, but the TV-safe version isn't on youtube.

I'm starting to get a little worried because my hair is taking a really long time to grow back. They say it takes 2-3 months to fully regrow after chemotherapy and that has been my experience in the past, but this time around it's been seven months since my transplant and I'm still waiting for full regrowth! About a third to half of my hair has regrown, so I have hair all over my head, it's just really thin and doesn't fully cover up my scalp. It's actually getting relatively long now, long enough that if I had full regrowth I would no longer be wearing scarves to cover my head. I'm getting nervous that the rest is never going to come back! I have heard from other patients that one of the chemo drugs I got before my transplant makes your hair take a really long time to come back, and I am getting chemo now (although normally the drugs I'm getting shouldn't affect hair growth), but it is also possible to have gvhd that prevents your hair from growing. Obviously that wouldn't be the worst tragedy of my life, things could be a lot worse, but I really just want my hair back already! I have enough other crap to deal with, it would be nice to not have to worry about hair gvhd and being half bald for the rest of my life!

So, when I went to the doctor on Tuesday I brought the hair problem up. My nurse practitioner took a look at my head and said it would probably be worth trying some drug called minoxidil, which is available as a topical liquid that you apply to your head. I'm thinking okay, minoxidil, this sounds like a good thing, hopefully this will help stimulate those little follicles to start working again. The nurse writes me a prescription for the minoxidil and I go to the pharmacy to pick it up. Turns out minoxidil is Rogaine!!! So now I'm using Rogaine, hopefully it will work and within another few months I'll have a full coverage.

I reached my peace a long time ago with the fact that I have to lose my hair to save my life. It's honestly not such a big sacrifice to make in the grand scheme of things. It doesn't bother me that much to be bald, and a lot of that is due to my dad always being totally fine with his baldness and making it a joke. The regrowing phase is annoying because you end up with so many terrible, terrible hair lengths and weird frizzy Jewfros. The change in appearance is hard to deal with because not only are you trying to process everything medical that cancer involves, you have to look in the mirror every day and see a stranger staring back at you. It's dehumanizing and can make you lose your sense of self on top of everything else you have to deal with. But like I said, keeping the big picture in mind, it's worth it, it's not a big deal, it happens and you get over it. It saves time getting ready in the morning, I save money on hair products. If I'm ever on the run from the police I can hide out in the melons at the grocery store.

I really don't like to wallow in self pity or be all "woe is me" even though my situation is admittedly very shitty, but it would be nice to catch a break with the hair situation. Although again, if it's a trade off between life and hair, life wins every time. How fun to have to make that choice and qualify everything that happens as living vs terrible side effect. I should be getting a fun summer hair cut, but no, instead because it's been so hot out I am debating going without a scarf and feeling like even more of a freak than I already do.

But Rogaine is funny! I can get mileage out of that joke for at least a couple of months.

Six Years

Six years ago today I walked into an exam room and a doctor told me that I had leukemia. I was admitted to the hospital the next day for the first of many month-long hospital stays, and the day after I started chemotherapy. A week later I finished my first ever round of chemo and celebrated my 20th birthday.

A lot has happened health-wise in six years. I relapsed a few times, had a couple of transplants, got all kinds of crazy treatments, racked up several more stays in the hospital, had lots of blood and platelet transfusions, spent countless hours with various healthcare providers. But the most important thing that has happened in the past six years is that I LIVED. Despite leukemia's ongoing efforts to get rid of me, I am still here.

Up yours, jackass.

Mackinac Island Part Two: The Grand Hotel

The longest porch in the world! I think it is 600 feet long.


Another shot of the porch, this time with a little sun shining on it. I had to cleverly use the branches to shade the camera from getting too much sun. Most of the time we were on the island the weather was cloudy and/or rainy, but on Saturday afternoon we had a lovely few hours!


View looking off the porch towards downtown (which you can't see because the Grand is on a big hill and surrounded by a lovely garden).


As part of our Arts Weekend package we had a lovely reception every evening before dinner. They offered lots of different types of alcohol, including champagne, fresh fruit and vegetables, cheese, crackers, shrimp, chicken skewers, and these absolutely scrumptious little spinach, sundried tomato, and feta mini quiches. They were so good I was forced to have about five!


The view looking down the porch. We were serenaded by classical jazz during our reception hour, and always served by an impeccably dressed wait staff. As my dad says, it is all very civilized - you are served a full five course meal by uniformed waiters, there's a special wine staff, the food was delicious and elegant. I especially loved the fact that there were always activities in the hotel, which made it feel like an old time vacation resort for the very wealthy. There is afternoon tea, and after dinner you can have an espresso, there's dancing with live jazz music, and of course more cocktails. The jazz band plays during dinner too. There are shops in the hotel where you can buy all kinds of knicknacks, and lots of public areas where families liked to play card and board games or just relax. Did I mention that after 6 PM you have to be dressed in your finest? Oooh la la!




















The dining room at break fast on our last day. Aren't the mirrors wonderful?


Looking out the window from the dining room onto the porch.




















Shots of the parlor, where afternoon tea, espresso, and the evening cocktail take place.


The room. It was quite large and perfectly set up for my parents and me. You can see we had a nice living area as well as two good sized beds. The only thing that I found a little disappointing was the decoration of the hotel. I was expecting more of a Victorian influence but it was more modern English cottage with big, bold prints and colors that sometimes clashed. But this is a minor criticism. The service is really the big selling point and it was really fantastic.



Commemorative pictures from the filming of "Somewhere in Time" in on of the lobbies.





















Shots of the garden in front of the Grand.



A shot of the Mackinac Bridge (The Mighty Mac) at sunset from the porch of The Grand. The Mighty Mac links the upper and lower peninsulas of Michigan and is the third longest suspension bridge in the world and the longest in the western hemisphere.

Mackinac Part One: Fudge

I think to make the posts more readable and organized, I'm going to divide them up into a few parts. So to start off, a review of the fudge!

There are several different fudge companies on Mackinac: Ryba's, Joann's, May's, Murdick's, Murray's, and Sanders, which you've already heard about. It's a Michigan-wide company, although I've never seen fudge at their stores down here, and the other ones are all home grown on Mackinac. We didn't try Murray's because my parents said the last time they were up there it was terrible. I figured, no problem skipping out on bad fudge.

There are several possible problems with fudge. It can be too dry, too sugary, or too grainy. Naturally the fudge will dry out if it isn't kept properly covered after you buy it, so you have to rewrap and store it carefully. It's made on marble slabs in the store. The hot fudge is poured out on the marble slab and then the bakers scoop it up and fold it over, building it up into a long brick until it cools and holds its form. Then it is cut into slices, which you can have cut in half again when you buy it so that you can try multiple flavors. Most stores will require you to buy two halves to fill up a box. The fudge stores all sell other candy items as well - caramel corn, regular popcorn, usually ice cream, homemade candies, peanut brittle, etc.

So, here are my reviews of fudge, from worst to best:

Murdick's

Murdick's fell into the "too grainy" trap. We got peanut butter chocolate chip (on the left) and double dark chocolate. The double dark chocolate wasn't chocolate-y enough, and in addition both were a little dry. The chocolate chips in the peanut butter one didn't melt enough so they were kind of hard (they're only in the very center of the slice so you can't see them very well in this picture). Murdick's is probably not worth the trip if this is their typical standard of product.

May's

May's claims to be "the family that made fudge famous." The first problem with May's is that they wouldn't cut the slabs of fudge in half so that we could try a couple of flavors. That was annoying. Their fudge was not at all dry, very soft and fudgey, but the chocolate peanut butter flavor that we tried was more caramel flavored than chocolate flavored.

The next three I have a hard time ranking in any order because they were all so delicious! It's impossible to choose between them!

Sander's

We got the peppermint patty flavor. WOW. Creamy, fudgey, delicious flavor - a definite must-have if you find yourself on the island! Sanders features all kinds of other unusual flavors that are a depart from the typical chocolate, chocolate peanut butter, vanilla walnut, etc.

On the top left is chocolate peanut butter, bottom left is cherry coke, the bottom right is cherry vanilla swirl or something like that, and the top left I'm not sure.

Chocolate raspberry (which we tried a sample of and was also DELISH) on the top left, mocha cafe on the bottom left, German chocolate on the bottom right, and vanilla pecan on the top right.

Joann's

Joann's wins the prize for cutest store. Unfortunately my photo didn't turn out very well, but I think you can get the idea, and you can see my parents in the picture!

And I got a nice picture of the guy cutting the fudge slabs. The other great thing about Joann's is that they'll give you any warm, melty scraps if they're available when you walk in. YUM!

Joann's also has some pretty unusual flavors:

The labels are pretty easy to read on this picture.

Here on the top shelf we have double dark something with nuts, double dark without nuts, and raspberry truffle. They also have rocky road, kahlua, butterfinger, and several sugar-free selections. We ended up getting the double dark chocolate (had a warm, gooey sample and just couldn't resist!):

And chocolate cherry and maple. Joann's was the only shop where they had plain maple and didn't require you to buy maple walnut, which is a double whammy for me. Not only do I not like nuts, but since my transplant I've developed an allergy to walnuts!

Joann's is creamy, soft, and delicious. Not grainy, not too sweet, really good flavor of everything, but the double dark chocolate was especially fantastic, much better than Murdick's.

Ryba's

Ryba's is practically an empire and owns half the downtown area! Their characteristic pink and brown logo and awnings are all over. They have at least four fudge shops, two bicycle rental shops, and a breakfast restaurant!

Ryba's also had delicious, soft, not at all grainy fudge. We tried the gourmet oreo cookie flavor and the chocolate peanut butter, which was much richer and more chocolatey than May's.

Of course I had to try the ice cream too! Most places carry a brand called House of Flavors, which is made in Ludington, MI, on the coast of Lake Michigan. The ice cream was fantastic! I tried three flavors while we were there: cookies and cream, black cherry, and peanut butter Mackinac Island fudge. All were superbly creamy but not too rich, had a really good flavor, and weren't too heavy either, they didn't sit like a rock in my stomach like ice cream sometimes can. The standout winner was the peanut butter Mackinac Island fudge, which had little pieces of fudge mixed in with ribbons of caramel and peanut butter in vanilla ice cream. It was AMAZING. I would go all the way there just to get this flavor again! It isn't actually listed on their website and I have no idea why, because it's amazing. AMAZING.

As a side note, a lot of the fudge places list flavors on their websites that I did not see in the stores, so I don't know if those are premium flavors that they make on request or for special occasions or what. Also, what's with all the nuts in the fudge? I'm going to sue them for discrimination against people with nut allergies!