Saturday, March 27, 2010

Title-less

The bad news I received a few days ago was really, really bad news. I've been in a funk about it ever since. I learned that two of my leukemia and transplant buddies relapsed. One had just had his first transplant and still has a lot of options open to him. The other one, my terrific two time transplant twin, relapsed and has elected to receive palliative chemotherapy. Meaning that she is no longer seeking a curative treatment, that the chemo she is receiving now is just to make her comfortable, and that she is going to die.

I am completely heart broken.

I could try to convince her to continue to look for other opinions, other options, that she can't just give up, but that would be wrong for several reasons. First of all because it isn't necessarily realistic, and second of all and most importantly, because it is her choice and I have to accept that.

When someone is dying, it isn't about you, it's about the person who is dying. This is the time to stop being selfish and self-centered and think about them. Do whatever you can to make it easier for them.

When my first cancer friend, Chris, got really sick and it should have been obvious to me that she was dying, I couldn't accept it because I cared so much about her. I couldn't bear to think of her dying. But by being unable to accept it, I think I made her own dealing with her impending death harder for her and I really regret that. When Sean, Tali, and Steve died it was more sudden and shocking; I didn't have a chance to get used to the idea. I knew they were sick, but their health deteriorated so quickly that I didn't find out how bad it was until they were already gone.

I am closer to J and T than I have ever been to any other cancer friends and it hurts so much more to know that they have more bad times ahead. With J, he still has more time and options, even though I know how shitty the chemo and second transplants are. They suck.

But with T... I just can't even begin to imagine a time when she won't be in my life. It makes my heart hurt to think about it. At least I know that I will be a better friend to her than I was to Chris. I accept her decision, I know how important it is to spend as much time together as possible, to enjoy whatever time is left and not take one second for granted. I'm going to do whatever I can to make this easier for her.

It just hurts so much.

J and T, if you read this, I love you both.

10 comments:

Amber said...

My heart goes out to you. I am so sorry that you are going through this and that your friends are suffering. I can't imagine.. you are such an amazing person to stay so centered and deal with all of this so realistically. I'd want to run under the bed and cry.
I lost one of my childhood best friends to leukemia a few years ago after a long bout with GVH and a couple of relapses over her life. I'd always imagined that she'd gone on to get healthy and live a normal life. I regret every day that I didn't keep in touch and that I couldn't be there for her in her time of need, but I'm sure she had wonderful friends like you to support and care for her.
I'll be thinking of you and praying for all of you. Even if it's not "about you", you still reserve the right to be upset and have a shoulder to lean on so that when you do see your friend, you can be strong.

Leesa said...

Hi Mira....

I DO really understand your pain here-- the pain in your heart that you mention.. it's a pain I had in mine when my mom died... It felt like a stabbing.. but I think because you know something and you can't do anything about it and you know well that it doesn't end well...
My heart goes out to you and to your friends and their families...
When my mom was sick... (and that was over almost 5 years)... She had her own ideas about her treatment and quit chemo after about a year or so, b/c it was too hard on her... She when she found out it was in her liver... She started up with new treatment and one experimental one called herceptin + chemo... it was supposed to be really effective when taken together but again, the chemo was too much for her-- (she was about 60 at the time and I think it was just too much for her body). She told us (the family) that she didn't want to continue the chemo... I wanted her to fight it with EVERYTHING she had, but not to the point that she couldn't handle it.... Quality vs. quantity, right? You still have to maintain a certain quality of lie, or it's not really worth it...
She quit chemo for around a year.. then went on with something else that was strong and experimental... One lady in her group died one day from a heart attack.. that chemo was very strong.. and could give you heart problems.. My mom got a necrosis on her toe and we all got scared that the chemo was too strong.. She stopped and tried some alternative things..
When I think about all that my mom went through.. I am amazed... I only wish that her treating onc. paid more attention to the spot on her liver - which turned out to be a metastasis... I think back about what my mom endured ... I don't know if I could go through the same thing...
Sorry, if I'm talking so much about my mom here when you are talking about your friends, but I sometimes feel good talking to you about my mom... and that it also helps me, too.. and that you understand...
I am so sorry for what your friends will have to go through... and about your friends who have passed on.. I DO know how hard it is to lose the ones we love... Especially when we are talking about cancer here.. It just seems so UNFAIR!!! I HATE it!!

Zhu said...

I can totally understand your reaction, I think I would also want my friends to keep on fighting. I can't imagine not to. Yet I kind of understand not wanting to fight anymore... even if I don't want to think about it because it seems too awful.

Oh this is so tough. I hope you can find some comfort and can comfort your friends as well.

Animesh said...

:-\

Nothing more comes to mind right now.

-A

Emily said...

I'm so sorry to hear about your friends....my thoughts are with them and you.

getyourselfconnected said...

No words can console or help with this. Know that I am always sending out my best wishes positive thouhgts to you an those around you. I wish more could be done. Keep your chin up and stay strong.

au soleil levant said...

Amber - thanks so much. There's lots of crying, don't worry about that. I cried while I wrote this entry, I cry every time I think about my friend T, I cry when I'm writing her emails... it's really hard to deal with. I didn't realize that you have a friend who died of complications from leukemia. Sorry to hear it. I hate cancer.

Leesa - we already talked about some of this on email, but I'm glad that you feel comfortable posting here about your mom and what you all went through when she was sick. The reason that T has elected to do palliative care is also because she's looking for a good quality of life, rather than feeling like crap but having a few weeks more.

Zhu - thanks. I also understand her decision to not continue with treatment. It's unlikely that she will be cured, and the aggressive treatments they would use would make her very sick. She's dealt with so much and fought for so long already, I think she just decided that she was ready to change the focus of her fight from cure to enjoying the time she has left.

Animesh, Emily, GYC - thanks for the kind thoughts and words. Very much appreciated.

Leesa said...

Mira...

Thanks.. I know that I do feel comfortable here talking about my mom and also relating my experiences... I know you understand and I do appreciate that... It helps me, too.. tremendously!
What you said to Zhu, is exactly what my mom expressed to all of us...
In fact, even though she never voiced it to us kids... suffered more than we were to ever know... I don't know if that's something I am thankful for-- that she wanted to spare us.. my mom was really an amazing woman.. she didn't want us to worry about her... or if she just took on that attitude because she watched her own father go through what she said was much worse ... when she was a teen.. I cannot imagine what she and my grandmom went through as they watched him suffer for two years in the hospital.. and mom telling me that they didn't give you meds to take away all the pain... or that the meds weren't the same back then... as you spoke of.. that would have been somewhere in '54 or '55... We've come a really long way since then...

Barbara said...

Hi Mira,

I'am so sorry to hear this.
I can only imagine how your experiences, both up and down, have bonded you all like a family.

It must be the most horrible thing to go through when a friend leaves you. Because, you not only place your entire hope strenght of your being into your recovery, but the recovery of everyone around you.

Wishing you strenght, for yourself and for all those around you who also are fighting to live.

xxxx

au soleil levant said...

Leesa - glad it helps you to talk about your mom. I know she was an amazing woman because you are too! You are a reflection of your mother. It is amazing how much progress has been made in research and treatment (and by extension, patients who go on to live healthy lives afterward). One of the most amazing things to me while I've gone through my second transplant is how much things have changed just from four years ago. Science is amazing.

Barbara - thanks. That's all very true. The three of us are very close, we are like a family, always checking in on each other, passing along news, having inside jokes, etc. It won't be the same without her. I wish that we lived in a movie where she would get her miraculous happy ending, but this is real life.