Wednesday, May 16, 2012

MAY 16, 2012


Sorry if this blog goes in circles, is repetitive, or doesn't make sense.  We'll blame the chemo pumping into me.  Mid-chemo blogging probably isn't the smarted thing, but I wanted to get it done.  So, please bear with me...

Day two of this round of chemo.  I've only been up for an hour, and I'm already tired.  *sigh*  I hate this, but I know it has to happen. Admittedly, it was easier this morning, since Levi is now home.  For those of you that don't know, he is searching for another job, here in the Phoenix area.  His last day with his now-former company was last week, and while it will put us back financially, it had to happen, for a lot of reasons.  Long story short, if you know of any job opportunities in the Phoenix area, please let me know.  The good news is that he's home now, and I don't have to worry about taking care of everything or coordinating with Mom and Dad to make sure they are here to help for basics.  That gives me the chance to sleep in, like I did this morning.  Huge difference.  But, we are now down to my income only, so any help is welcome and greatly appreciated.

All right, so the meeting with the dr yesterday went well.  My CEA is down again, down to 2.2, which is good news.  After some discussion, he has decided to schedule a CT scan for Tuesday, May 29th.  He is specifically looking at the areas in my lungs, and he doesn't want to depend on a single point of data (CEA) to know how my body and the cancer is reacting.  If there has been a decrease in size there, it will a) confirm that those spots are cancer, and b) will confirm that the chemo is working on all areas, including the lymph nodes in my abdomen.  It sounds like we are going to continue on to 6 round of chemo, then potentially scan (not sure what kind) after that to see where we stand and what the next steps are.  They have tested my original tumor from four years ago to get a more specific feel for what chemo will and won't work, so that has given them some additional tools to use in the future.  He specifically mentioned 
Erbitux as a maintenance drug; he seems to feel that it's much easier tolerated, but based on what I read, that remains to be seen.  :)

I think one of the things that we talked about at this appointment that we haven't really discussed previously is long-term goals.  I flat-out asked if I was in for a long-haul maintenance for the rest of my life, and he confirmed it.  So, as much as I'd like to believe that I'll one day be cured, I don't think that's a possibility.  Rather, I likened it yesterday to a long-term maintenance (similar to a diabetic), and the doctor seemed to agree. I don't like it, but I understand it.  Such is life, I suppose.  Well, such is MY life.

I did ask if we can go on and off a chemo, meaning can I start Folfiri again in the future if I've gone off of it at some time?  Yes, I can.  He's talking about a couple of different options, including pushing out the chemo treatments to every three weeks, rather than every two weeks (assuming the cancer stays in check), or shifting to Erbitux or Avastin as maintenance until the cancer shows it's ugly face again.  Then, we would go back to some version of chemo until we get it back under control again.  And, this will be my life, and how I keep on living.

But, I hold out hope that with all of the advances in cancer research, a cure is still in the cards.  Why not, right?  Hope....

The good news is that my numbers are continuing to go down, and the doctor seems to feel that's a good sign.  I think we are all happy to know that we'll have proof of that from the CT scan.  This will really help me feel like I'm on the right path, and making the right choices.

Chemo yesterday wasn't too bad.  I was able to stay awake enough to send a few emails and to complete a few tasks, then I was unconscious thanks to the Benadryl and Ativan.  :)  Got home, had dinner (my version: cheese and Wheat Thins), and was pretty tired.  Headed to bed after I set my alarm for 1am, per my nutritionist's orders.  She thinks that if I eat a midnight snack, it will help me stave off starvation and extreme nausea when I wake up in the morning.  And, you know what?  It worked!  I woke up tired, but not nauseous.  Thank goodness for smart people on my team.  :)

Right now, I've been up for about two hours, and I'm getting tired.  All I did was get breakfast and update this blog, and I'm pooped.  Knowing that I don't have to worry about the kids, dinner, etc. makes all the difference.  I'm not constantly looking at the calendar, wondering how many hours until I have to get the kids, be ready for dinner, etc.  We had a friend bring dinner last night (thanks Jill!), and another one bringing dinner tonight (thanks, Mary Beth).  I'm in the countdown to get this damn pump off.  Tomorrow.  Tomorrow, I keep telling myself.  That's all I need to make it to.

Another good piece of news came in this morning- an amazing friend paid for my tickets to go back to Syracuse, NY next month.  I'm so excited.  I can't wait to see my family and friends - I haven't been back in almost three years, and not since the re-diagnosis, so I'm excited to be able to see everything and to thank people in person.  It's going to be awesome - and, since I don't have any hair, I won't have to worry about my hair getting all crazy inn the humidity.  :)

All right - I'm crashing, so I'm going to log off.  Have a great day, my army!

Comments:

Melanie said...
You're coming to Syracuse!!!??? Yea! It sounds like you are on the upswing again... despite being tired you sound optimistic. Keep it up, girly-girl! And you're right about the ever changing advances in treatment... just look at breast cancer. We have a very strong history of colon cancer in my family (my grandmother passed at age 59 from it) and yet other members of my family have had such different treatments. You are in great hands.

Oh I can't wait to see you! Yea! I'm praying that a job prospect comes through for me in a few weeks and if so, I may have the resources to travel. Hoping maybe I can come out that way some time soon to see the great state of AZ, your family, some friends, and most importantly YOU!

Keep on sleeping... the healing process speeds up when you sleep. That's what my neurosurgeon said after my 2nd surgery. Love ya!
May 16, 2012 at 12:17 PM
Blogger I'm Nic. said...

"But, I hold out hope that with all of the advances in cancer research, a cure is still in the cards. Why not, right?" You are absolutely right lady!! My Mom is into her 14th month of chemo (yesterday was chemo day so pump off tomorrow - I know she shares your pump sentiments). Her docs are talking about giving her a "chemo vacation" depending on what her cat scan at the end of the month shows.
Trip to Syracuse...yay!! Us eastern Ontario Canucks flock to Syracuse for the Carousel Mall and Waterloo outlets! Enjoy your much deserved trip! Hang tough strong lady!
May 17, 2012 at 5:07 AM

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