Tuesday, May 4, 2010

Everything's coming up stinky

I had a great weekend. Wonderful to see my friend, so nice to just relax and feel like I was in college again. Nothing like seeing good friends to put you in a good mood.

Nothing else is going well.

I had a lumbar puncture (spinal tap) a couple of weeks ago that showed a few leukemia cells in the spinal fluid. At the time I really didn't see it as a big deal - literally they found seven cells, and though it technically counts as a relapse, I was already slated to get more chemotherapy as part of my maintenance plan to prevent another relapse, so I just saw it as more of the same with a variation. The treatment for CNS (central nervous system) disease is chemotherapy injected directly into the spinal fluid, which sounds really creepy and does freak me out a little, but with some good sedative drugs isn't terribly anxiety inducing. You can get headaches from it but luckily I didn't. I had some low grade nausea and was a little tired but that was it. I'll get that twice a month for a certain period and eventually go down to once a month with treatment to continue for a year.

We decided to move ahead with my maintenance chemo, which is this drug called Vidaza that also has very minimal side effects. I get it for a week once a month. It's a short infusion and I will spend more time waiting around to get it at the outpatient infusion clinic then actually sitting in the chair getting the drug. That's nice. I started that yesterday, and I feel fine.

Fast forward to this morning when I got a call from my nurse at clinic. I had a bone marrow biopsy last Friday because with the relapse they have to check everywhere the disease could be hiding now to see if it's coming back. Remember, I haven't had any disease in my marrow (the main spot where leukemia likes to live) since before my first transplant four and a half years ago. There are no signs in my peripheral blood counts that there's disease in my marrow.

Biopsy came back inconclusive. There are some abnormal cells, not enough to qualify as a relapse, but too many for it to be clean.

I don't even know how to react to this.

I'm really upset. I feel like the walls are closing in on me. Granted, I will probably feel better about this in a few days when I get my fighting face back on and put things in perspective - not a full out relapse, I'm getting chemotherapy, I know my doctor is fighting for me and doing everything he can.

But is it going to be enough? Or is this just the beginning of more bad news?

I really hate it when the reality of my situation breaks through. I hate writing negative posts, I hate feeling negative about things, I hate not being cheerful, I hate feeling this vulnerable and putting it out for the entire world to read about. But I also hate lying, and I would be lying if I tried to pretend that I wasn't having a bad couple of weeks.

For now, I'm going to go take a walk outside in the sun to a cafe, get a smoothie, and then head over to the hospital for a blood draw, infusion, and to see my nurse.

14 comments:

Monique said...

Mira, it never ceases to amaze me at how strong you are. I can tell, going into this that even though you feel negative or down, you have that air about you still.

I'm thinking good thoughts for you to come out on top of this... again!

Amber said...

I'm sending you good vibes. I was holding my breath as I read this and my husband probably thinks i'm crazy, getting so worked up over somebody i've never met! But I have been reading your blog for ages now and I feel like I know you. I want everything to improve for you so i'm sending you good, positive vibes, and lots of prayers.

Eileen said...

Definitely don't feel bad about writing negative posts, especially with things like this. People who are cheerful all the time are less interesting, even though of course I wish this weren't the reason you aren't feeling optimistic. We (at least I) read your blog to know what's going on in your life, and because you're interesting to hear from, not to be uplifted. Anyway, I hope this is just a minor setback for you, and if there's ever anything a person could do to help from thousands of miles away, let me know!

kiwi in france said...

Oh no, I can understand why you feel upset and understand why you are writing a non-cheerful post. But you are strong, and I'm sure you'll be able to fight it and you have great support from your doctor, nurses, friends, family and us bloggers... we're all here for you and thinking about you. Sending loads of good thoughts your way!! Hang in there and enjoy the sun, smoothies and lots of icecream!!

getyourselfconnected said...

A bad couple of weeks indeed. Sorry for the stinky news. I cannot imagine there really is anything I could write that could help, but know that I am cheering for you! Try and remember that Japanese quote I left a while back; you can cross this river.

Rose said...

Mira, I'm thinking of you. I wait patiently for your posts hoping to hear some of your intuition...I know it's not good for you but I'm scared for you. There. Now you don't have to be because I am. I'm sorry honey. Keep fighting. You don't have to post this if you don't want.

Zhu said...

Okay, that sucks. Bitch and complain all you want, you are being granted the license to do so. Man, I can only try to understand how upset you must be.

Please, don't give up! It's important to be mentally strong, which doesn't mean you cannot totally complain about it. But think about all you went through... and tell yourself it's gonna be okay. Positive thinking.

I swear, I didn't uncross my fingers! Okay, that's it, I vais scotcher them croisés.

Andromeda said...

Like the others said, don't worry about posting negative stuff, we just want to know what's going on with you! Keep posting updates, good or bad, we are all thinking of you and wishing so hard that things get better for you!

au soleil levant said...

Thank you, thank you, thank you so much guys. The surest pick-me-up is to have wonderful friends :)

getyourselfconnected said...

Glad you liked the Bahamas pictures. Best wishes.

Emily said...

argh. sorry to hear this new piece of news. let me know if you want to go out for a cupcake pick-me-up.

au soleil levant said...

Thanks guys. Em, I may have to take you up on the cupcakes...

Leesa said...

Hi Mir-

I'm sorry that you got this bad news and I know that it must be very discouraging... after you've been so much all ready. You can say whatever you need to say here and we're all hear for you- for encouragement and support.
I am really praying for positive things for you. I know you are a really strong person, but I also know you just want to get past this and to have some peace.
Please keep us posted and like I said (as well as your other friends here) ... don't worry about having to write something positive - we're here for the good and the bad. I only wish that wouldn't have to go through the bad and could only have the good from now on!
Sending you big, huge hugs!Leese

au soleil levant said...

Thanks Leesa :)