Monday, January 4, 2010

Resolutions and Realities

The last quarter of 2009 sucked. A lot. We all know why, no reason to rehash it all over again. 2009 was a terrible year for disease in general. I had three friends relapse, two friends received second transplants, two received their first transplants, and one died. Yikes. You can see why I was anxious for 2009 to just be over and done with.

Not that 2009 was all bad. I continued to enjoy my job in France and improve my French skills, I hope I made a difference in the lives of a few French kiddies, I traveled and especially enjoyed my vacation in Austria and Hungary with Leesa, I developed some very close friendships, and even though I didn't end up with a job that provided me with a visa to stay in France (which turned out to be a good thing), I did get called in for a few interviews, so the letters and CV that I put together were pretty successful.

Despite these good things, my memories of 2009 will always be shaded by the bad things that happened. I closed out the year ready for something new. I felt drained of optimism and hope, crushed by yet another relapse, the sheer number of pills I have to take every day (hint: over 30), my loss of independence, loss of an interesting life, and the lack of a job or classes or anything to motivate me to get out of bed and get dressed and showered on a daily basis (but just so we're clear, I still do, I just don't have a real reason to and most days I don't want to). I can't even use food as a crutch because it doesn't taste good or has no flavor.

There's a lot of "tyranny of positive thinking" out there when it comes to cancer. Sure, a positive attitude is important and you have to go in fighting for a positive outcome, but when it comes down to it cancer sucks a lot and both the patient and her supporters have to be able to be honest about that and acknowledge it. First, chemotherapy is absolute hell. You can't imagine that you could ever feel so bad. Then, not only is it totally dehumanizing to look in the mirror and not recognize yourself, but even more damaging are the changes you have to make to your life because of the treatments and not having a functioning immune system. The contrast between my life six months ago, when I was living in France, and my life now, living with my parents and unable to leave the house except to go to the doctor, is so absolute and soul crushing that it breaks my heart. Everyone thinks they want some time off, a little vacay to do absolutely nothing, but I can tell you, doing nothing gets really old really fast. There are only so many days in a row that you can lay on the couch watching TV and movies. And I do not have other options. I can't leave the house and go out in public because my immune system is still too weak. I'm not even supposed to drive. Stupid medications.

Not to mention, I'm going to have to start another chemotherapy regimen in the next couple of months because it is extremely probable that I will relapse again and we are trying to avoid that. But because my situation is so rare - a relapse in the digestive tract several years after a bone marrow transplant - there isn't any established plan of care so we're making it up as we go. I love my doctor and have absolute confidence in him and I know he's working really hard to come up with the best plan of action for me, but it also tells us something that he has to work so hard to try and keep me alive. That has a big hand in my lack of hopefulness and positivity.

And there you have it, the honest truth about being a cancer patient. Or at least a bone marrow transplant patient. I have no idea what kind of schlocky crap they are feeding to the nation over on Brothers and Sisters or Grey's Anatomy because I absolutely refuse to watch it, but this is my reality.

So my wish for the New Year is to have a little more hope for my future, a renewed outlook, more energy so that I feel like doing something besides lying on the couch all day, and fewer days where I feel emotionally blah.

Obviously a lot of the work towards a more positive me comes from me making positive changes in my life and actively working towards being happier, so I really don't need anyone to tell me that in the comments.

My other resolution is to be a nicer person. Not that I'm a mean person, but one can always be nicer.


Leesa said...

Hi Mir...

If it's the one thing I love about you is the way you provide the truth, the facts, the reality of it all. Yes, it SUCKS and it's a HORRIBLE disease which I am unable to fully grasp (personally) except for the hard truth and reality of watching my beloved mom go through it for 5 years... and she didn't provide the same kind of info that you provide... So I really applaud you for making it very clear to everyone...

My mom really suffered but kept it hidden from us behind her smile and reassurance that "everything was alright." She watched her father suffer in pain for about two years in the hospital with bone cancer when she was 14/5 years old.. They didn't give the proper pain meds back then, apparently.. back in the 50s... anyhow.. I know medicine has come a long way since then but it really evades me why there isn't a "cure." God- it infuriates me..

Not just in losing my mom to it... but in your case, your friends and all of my friends, family... etc... who have to go through this disease with no real
"assurance" that it's gone for good...

It makes me angry and sad...
I don't have cancer right at the moment (I mean, I could but it's not dianosed)-- we all have some kind of cancer, after all.. .don't we? Or, if we live long enough.. the crap we eat or the environment we live in will cause some type of cancer in us.. eventually... It's my fear since it was my mom with breast cancer...

I join you in the "It SUCKS!!" It pisses me off to no end that you have to go through this.. and I know that it's hard, though I can't imagine a fraction of it because it's really horrible to imagine and unless someone is going through it personally- the physical and emotional side of it.. not just family/friends watching their loved one suffer and go through this.. but to really go through it on your own.. Mira.. I don't know why you got this cancer.. but I hate it I really want you to get well ... Will they EVER have a real CURE???? Please someone, find a CURE to save all of our loved ones out there...
I'm sending you all of my best positive thoughts, prayers, energy... whatever it takes..
I am very thankful for the time we spent together traveling and seeing great things.. I hope that time will come again... maybe this year, maybe next year.. but sometime.. And you can come back to visit and stay with us.. or Animesh... and we'll go travel again!!!
Love ya!!

Barbara said...

Hi Mira,
Bonne année !
I'm wishing you above all to get to that goal of health and well being.
Day by day, as painstaking as it can be.

I have not been treated for a cancer so if I say " I understand", it would not be a complete undertsanding. But... I can relate like Leesa, being the child of a parent with cancer.

My Dad had colon cancer at a very advanced age( the reson why he didn't do chemo), and survived 2 years until he passed away at home.
So I have been in a my father's suffering,frustrations and changes until the end. And that changes you, as a person & as a "child".

Keep HOPE close to you and keep it burning.

Emily said...

Hi Mira, Thanks for the honesty of this post. It was really eye-opening to hear your thoughts on the contrast of your life in just a few short months...I'm a big fan of Barbara Ehrenreich and have been following her recent interviews as she promotes her new book written in response to the cult of positive thinking. If you've read it let me know what you think

Sevonne said...

You say things as they are -- it's refreshing. I'm sorry 2009 sucked as much as it did for you and I hope that 2010 brings you the renewed energy and optimism you hope for yourself. I have to believe that G-d only gives people the challenges that they are able to handle, and man you do it graciously. Thanks for your honesty, bluntness, and glimpse into your reality. I am keeping my fingers crossed that this new year ahead will bring you only everything good that you deserve.

Katie said...

I hope that 2010 will be so much better for you. It's true that the bad things tend to stand out against all of the good things when looking back in the year. One of my close friends went through Chemo and it's a really horrible experience (so i've heard). Just remember that everything will soon be over and you'll be able to restart your life again with full strength! We're all thinking of you!

Eileen said...

Hey Mira, Barbara Ehrenreich (of Nickel and Dimed) wrote a shorter piece about breast cancer and the breast cancer awareness movement. I'm not sure this is the same thing but it's certainly her talking about the same message and material:

I thought you might at least find it interesting.

au soleil levant said...

Leesa - thanks for your very honest, personal comment. One of the hardest parts of this for me is knowing how much it tears up my family and friends. I would hate to watch someone I cared about go through cancer. I think that's probably why your mom put on a brave face, because she didn't want you guys to know how terrible it was for her to go through it. She wanted to spare you as much pain as she could.

We can cure cancer, we just can't cure it in everyone and that is the tragedy. Especially in certain pediatric cancers, cure rates run 80-90%, which is amazing. It is so terribly unfair that not everyone is cured, that there are still people who suffer and die and those left behind who missed their loved ones so much. We should celebrate the advances that have been made, but the job is not finished, and unfortunately we are finding, especially in breast cancer, that is a really complicated beast. That sucks and it's unfair. Everyone should be cured.

Barbara - I'm so sorry to hear about your father. Like I said to Leesa, I would never want to watch a loved one go through cancer, it's truly awful. Thanks for the kind wishes.

Emily - how much longer are you in town? I'd like to see you before you leave. I haven't read BE's new book, but I think she's right on in a lot of places, and that's kind of what I wanted to communicate here. It isn't all about pink ribbons and Races for the Cure, there's a very dark underbelly to cancer that gets shoved aside in popular culture.

Sevonne - thank you so much. Your continued support over the years has meant a lot to me. Best wishes to you and Philip for a happy and healthy 2010.

Katie - I really do hope that 2010 is better than the end of 2009 was! I'm sorry to hear about your friend, I hope s/he is doing better now. Thanks for the good wishes.

Eileen - thanks for the link, I found it extremely interesting. I saw some of her interviews for her new book and it was nice to read this because it deals specifically with her feelings about the breast cancer movement monster. It isn't completely what I was saying here, but I agree with a lot of what she has to say and we do have similar thoughts on the issue.

Zhu said...

It sucks. There is no other word for it and I feel sorry you (and anyone for that matters!) have to go through hospital, long stay at home, not knowing what the future holds etc.

That said, even though I know it must be difficult, try to stay positive. Life has ups and downs. This is a huge down but you will have a huge up coming sometimes soon. It's bound to happen. I'm not religious or anything but I believe life is a like a crazy roller-coaster. It surprises you all the time, making you happy, making you puke (!), making you cry and ask for more.

I feel very awkward when I try to cheer you up because I'm not in you shoes. Not too awkward I hope though.

au soleil levant said...

Thanks Zhu. It's never awkward because I know it's sincere and heartfelt. :)

Erica said...

It's funny that one of your resolutions is to be a nicer person. One of mine is not to be as nice. When you're too nice, people take advantage of you (they've been doing it to me forever!). It's one thing to be courteous and respectful and to try to understand where the other person is coming from when there's a conflict, but don't let people walk all over you.

And thanks for being so honest about your fight. We read your blog because it's real, YOU'RE real, and that beats any written script anyday. We're not here to only hear you "put on a happy face." Vent if you have to ... that's what I often use my blog for !!

Mary Community Farm Kitchen said...

Well, sweet lady, keep truckin'. You light up our worlds every day, even when it sucks. :-)

plus, 2010 is totally going to rule. it's a whole new decade!

au soleil levant said...

Erica - very good point, there is a difference between being nice and being a doormat. By "nice" I mean ... maybe being gracious? I think that society nowadays values sarcasm and snarkiness too much, when a kind word and basic courtesy are always more appropriate. And thanks for giving me the freedom to vent! I really appreciated your comment.

Mary - you're such a lovely person. Can't wait to catch up with you when you get back to town.

Alan Moyal said...

Hello Mira,

My daughter Monique told me of your situation. Thanks for sharing the story of your mission. Your attitude is very special and I feel you are on top of it and will succeed. My mother also went though difficult cancer and survived beyond doctor expectations (she lived to a ripe age of 80).

I want to share with your readers what we can do as a group for cancer patients. I started giving blood a few years ago at a company drive (I don't have any friends to my knowledge who donate). Red Cross soon asked me to provide plateletes and I did it in honor of my mother as she required frequent infusions of donor platelets during her chemo ordeal. I hated the process as it requires laying on a table for 2 hours with tubes connected in each arm in order to provide two units of what ever the liquid is. They do provide a movie which is a great distraction (don't watch a scary one as the needles hurt each time after being startled). RC has increased their frequency of calls but I resist doing more often than every two months (it can be biweekly). My little inconvenience is nothing compared to patients on chemo (I can walk out after two hours too). You are in my thoughts so that is why I keep donating platletes.

My hope out of this is for others to realize the support we can provide you (and your friends) by donating blood and or platelets. Even if only once in a lifetime, everyone capable should donate (contact a local Red Cross Branch). Keep the faith et bon chance. Après que vous soyez meilleur, peut-être un jour nous pouvons nous réunir en France.

To a speedy recovery,
Alan Moyal

au soleil levant said...

Hi Mr. Moyal, thank you for taking the time to stop by and leave me a comment. Thanks too for the blood and platelet donations; you're right, they are so important for cancer patients and I have had uncountable transfusions over the past five and a half years. I used to donate, back in the days before I got sick, and it is not a fun experience so I really appreciate everyone who will go through a period of discomfort (needles in your arms are not fun!) in order to help a total stranger. Thanks again for stopping by and for your encouraging words.