Saturday, October 10, 2009

Some days you gotta dance

What changed? Nothing good.

That "stomach bug" I thought I had in my last post turned into massive, unbearable pain two weeks ago, causing me to call my doctor (transplant doctor, of course, because I don't actually have a primary care physician, oops). I ended up being admitted to the hospital with elevated liver enzymes and strong suspicion of gall stones. I wasn't allowed to eat for the next three and a half days because eating aggravated the problem. A couple of days later, sure enough, tests confirm gall stones, which had passed by that point. I had an endoscopic ultrasound (ie they stick a tube down my throat while I'm under sedation to get a picture of what's happening on the inside) to make sure things had cleared out, and at that time they took some tissue samples to see if GVHD was aggravating the problem.

The next day my world came crashing down around my ears... again. At the very end of the day the doctor came to give me devastating news. The tissue samples had revealed a hematologic malignancy in my gut - a blood cancer.

They weren't sure at that point if it was my old leukemia that had relapsed or a new cancer that had cropped up, the pathology lab hadn't finished their analysis. I found out last Tuesday that yes, I had relapsed, for the third time. Last week was a blur of tests and procedures - a PET CT, MRCP, bone marrow biopsy, lumbar puncture, and the placement of a stent in my bile duct to hold it open against the onslaught of rapidly growing cancer cells threatening to choke off the entrance to my intestines. The good news is that the leukemia is only in my gut; it is not in my bone marrow or my central nervous system. But how weird is that? I have leukemia in my gut, like on my pancreas and in my liver and stomach. WTF?!?

I started chemotherapy this afternoon. My mood has been pretty good today, I'm still in a lot of shock and denial, but I was not a happy camper yesterday. I was out of the hospital on a day pass and I spent part of the evening packing for my upcoming month in the hospital, just like I did five years ago when I was first diagnosed. I sat down on the floor of my bedroom and cried, just like I did five years ago, but I was not crying because of the unknowns and the newness of the diagnosis, as I did back then. I cried because I thought I wasn't going to have to do this again and I can't believe that I have to go through this again. I really thought that this time I was really safe, that I wasn't going to relapse again. I thought I was actually able to move on with my life, I was planning for the future, I was finally enrolled in classes to start moving towards the goal of medical school. Cancer has already screwed up my life enough, and here it is, back for yet another round. Jerk.

And here I am, back in the hospital. Again.

I'll get chemo for the next four days (five, including today) and then be in the hospital for a month as my immune system and the leukemia cells are killed by the chemo, which will make me extremely susceptible to infections. Then my bone marrow will grow back and they'll let me out. We'll probably do a second cycle like this in a couple of weeks later, depending on how many cancer cells we killed this time around, and then after that I will be getting a second bone marrow transplant. That is unbelievable. We can get into why BMTs are so intense another time, but trust me, they are very difficult. They have already identified 10 possible matches for me from the national transplant database, which is an amazingly high number. So far I feel OK - I'm not puking yet, let's hope it stays that way.

This will end up being my longest hospital stay ever. I will probably be in here for 5 to 6 weeks total, counting the week I spent here with gall stones and the week I spent getting testing done. I've done three separate month-long stays before, but this is going to be ridiculous. I just hope I will be able to keep myself from going totally crazy in here. I'm already thinking up ways to keep myself occupied and entertained, and suggestions are certainly welcome.

I will probably continue to update this blog during treatment, which is kind of depressing. This blog that I started to chronicle my time in France will become a chronicle of my third journey with this terrible disease. Instead of chronicling my adventures in Europe I will be blogging about the four walls of a hospital room. If cancer bothers you, you don't have to read my blog, see ya later. I like to think that I find the humor in the situation and can spin a funny story out of what happens in the hospital, so I promise it won't be all doom and gloom. It won't be exclusively cancer though, I still have lots of things to say about my time in France and observations about French culture and maybe other random tidbits of life when I eventually get out of here. You, the reader, should feel free to ask me questions in the comment section and I will try to answer the questions as best as I can.

One type of question I will not answer is any question or comment about my chances of "making it." First of all, I don't know what the survival statistics are for relapse of AML after transplant because I made a point of telling my doctors that I don't want to know and I will not be researching it on the internet. I imagine they are pretty bad and I don't want to hear it, I think that would be psychologically devastating. Secondly, the only numbers that actually matter for any individual patient are 0 and 100. You either live or you don't. I am going to try my very hardest to make sure that I live.

Fuck you, cancer.

25 comments:

Leesa said...

Hi Mir....

I just read this and will be writing to you by email instead of responding here... Leese

Barbara said...

Hi Mira,

I'm one of Leesa's friends in France.I've never been to your blog even though your pretty face is very familiar from Leesa's vacation photos.

I've heard from Leesa what is going on with your life and I offer not pity ( nobody needs that) but friendship.If I can amuse you by my posts or pics, all the better; come on over anytime.

I'm currently finishing up little by little my travel pics. I did Quebec city + Montreal with my hubby in september. I always share some ( not every single one; we have hundreds !!)with my friends.

Be strong.

Barbara

Isabelle said...

Hi Mira,
Yes, fuck the cancer!! I'm sending you zillions of positive thoughts from France. I can only guess how you feel, and I'm probably very far from the reality...
I know that you'll have the strength and the will to fight this stupid cancer.

Please let me know if there are some French books or magazines, or maybe some treats that you liked that I can send you. I would be more than happy to help you cheer up.(Although you might not be in the mood for reading in French when you are in the hospital...)

Mary Community Farm Kitchen said...

For a start, I have officially decided that relapse is not the word we should be using here. Relapse makes it sound like you're an alcoholic who fell off the wagon or something. I'm going to go with "the f-ing cancer is back". And you know I don't use strong language lightly. You are so strong and brave and lovely and I know you can get through this again.
Am coming later today with decorations.
I love you!

Lucia said...

Yes Fuck Cancer and I'm sending you many many positive thoughts!!!
Kick Cancer's ass!

Deb said...

Hi - I am a friend of Barbara, above, and I just had to stop in to see you.

My cousin, age 15, has AML leukemia so it holds a very solid spot in my heart.

I just wanted to say hello and say I have positive thoughts directed your way. . . . and YESSS, damn it - fuck you, cancer.

Eileen said...

Oh I'm so sorry soleil, I thought from your last post it might be something like this. I have nothing too inspirational to say, but as always I hope it all works out for you and will of course be reading to see how everything goes.

Jennie said...

Oh Mira, I hope everything is ok. Fuck cancer, indeed! I'm thinking about you here in Chambéry, actually wishing I could be in Michigan right now...

Anne in Oxfordshire said...

Hi Mira..I am a friend of Leesa's and Barbara's from the Uk...sending you lots of postive thoughts and prayers. Take care and big hugs Anne xox

Katie said...

Be strong and keep that positive attitude! I'm sorry that this is happening to you again. You'll be ok!

Fuck cancer!

Rose said...

Oh my goodness Mira. You are in my thoughts.
If cancer is anything like the French educational system or ridiculous tenants in the internat...well, we know how you feel about those topics. Keep us updated. <3

au soleil levant said...

Wow guys, I don't really know what to say. I'm so touched by all of your kind thoughts and words and offers of support. It really means a lot to me. All I can say is thank you, you're wonderful, and I feel very lucky that our paths have "crossed" in the virtual or real world. I really value all of the contacts I make with different people, especially now when I am dealing with this super shitty situation. Just... thank you. Thank you many times over.

Phivos Nicolaides said...

Mira, our possitive thouhgts and love for you all the way from Cyprus. Philip

Andromeda said...

I really hope you do keep blogging! You can see how strong and funny you are in your posts so please keep them coming! And like the others, I am sending all my happiest thoughts and wishes your way!

isabella said...

"There will be little rubs and disappointments everywhere, and we are all apt to expect too much; but then, if one scheme of happiness fails, human nature turns to another; if the first calculation is wrong, we make a second better: we find comfort somewhere."
Jane Austen, Mansfield Park

From one Austen fan to another - stay strong, be hopeful!

Ksam said...

No kidding, fuck you cancer!!

I for one will definitely continue reading - I think most of us are here because we care about you. And your life in France was just part of that.

I've been thinking a lot about you these past few days, and have been doing my best to send good vibes your way. You've got a lot of people rooting for you, and I do hope you keep blogging so we can keep on supporting you.

au soleil levant said...
This comment has been removed by the author.
au soleil levant said...

Again, I'm just really overwhelmed by the support guys - especially the Austen quote! Thanks so much, from the bottom of my heart, it really means a lot to me. I'm surprised and flattered that so many of you still want to read my blog, so I guess I will have to keep the posts coming!

I appreciate all of the good wishes, groovy vibes, energy, etc that you guys are sending my way, it makes me feel less totally alone and cut off from every part of my "former" life, and makes all of this cancer nonsense easier to deal with.

Alexandra said...

Mira, You continue to amaze me (and other people) with your strength. This is all just so unfair, and your post here captures just the right mix of indignation and resilience. I always look forward to reading your blog, and of course I still will! Much love, Alex

Erica said...

I've been following your blog off and on for a while, and while I was saddened to hear the news, I'm amazed at your wonderful optimism, so at the risk of repeating what everyone else has written, i'd like to chime in with a hearty "FUCK YOU CANCER !" Good luck, you've got a lot of internet support !

Zhu said...

Hi dear soleil,

I'm truly sorry to hear that and it just plain sucks. No better words for it.

Does it sound very stupid if I tell you to think positive and to focus your energy on beating that thing? You seem to be a strong girl and I have no doubt that you are a fighter.

I will check on you virtually, please keep us updated!

au soleil levant said...

Thanks for such lovely comments. I think about all you can do to get through something like this is to stay positive and just keep chugging on through. If you stop to think about it too much it's overwhelming. Small doses at a time. Thanks again for all the kind words and support.

Bee A said...

I just came across your blog and want you to know you can and will beat this. You are a very strong woman and I will continue to follow your journey! As they say let's kick this in the ass !

au soleil levant said...

Thanks for the encouragement Bee!

kiwi in france said...

Man, where have I been? Fuck you cancer!! Sending you loads of good wishes. Kia Kaha - Maori for Be Strong. Bisous