Thursday, June 30, 2011

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.

13 comments:

Amber said...

I don't even know what to say - this all sounds so scary but it seems like you are really taking it in stride? I know it's a stupid thing to say but I really don't know how you cope with news like that, and seven years! That's a huge chunk of your life. Anyway, fingers crossed that it's really gone, and gone for good. Don't feel like you have to keep secrets from us -- we're here for the good and for the bad!

In other news, you are more than welcome to join our book club :)

Andromeda said...

Yay for focusing on the good! Add all our positive thoughts to your positive attitude and hopefully things will improve even faster :-)

kiwi in france said...

Thinking of you! You sound like you have such a positive attitude with it all and no doubt this has helped you tremendiously! take care x

getyourselfconnected said...

I am glad you are feeling a bit better! I admire your courage and strength, just amazing.

Leah said...

You are seriously amazingly positive...I should seriously take inspiration from you because that is so not the case for me! I'm sending you good vibes from across the pond. :)

Gwan said...

Wow, once again amazed by your strength and positivity (and that you took the time to comment on my housing crap with all your own stuff going on). Hope everything continues to improve for you!

au soleil levant said...

Thanks so much for all the positive feedback guys. Like I said, I'm really lucky to have such great people in my life.

Ksam said...

Ditto what everyone else has said!! I can't believe how positive you stay, and how you still find time to care about how others are doing. I would probably be so wrapped up in myself and my own little world.

shannon said...

Same as everyone else said! You're seriously a rock star in my mind.

au soleil levant said...

Thanks guys. You know, if you all keep flattering me like this, I'm going to get a big head and will be selfish and self-centered from now on ;)

Monique said...

I keep waiting for really, really good news from you. I'm sorry it's back, but glad that it's not all totally bad!

You're in my thoughts and prayers; please continue being strong and optimistic and amazing!!! :)

Zhu said...

Gosh, will it leave you alone alone already! Okay, okay: this is it. Kick its ass once again and get back on with your life.

Hugs :-D

au soleil levant said...

Thanks guys, the good wishes make a huge difference.