Thursday, September 19, 2013

So What's Next?

I had my first follow-up appointment today. Because God forbid they even give you a week off from going to the doctor. Two whole days...whoohoo!

But it is good to go in for this one, because it's time to start planning my future and all the follow-up care that will become my life moving forward.

Here's what I know:
While it would be LOVELY if there were a magic blood test or scan that they could do to say that I'm "cured," there isn't. Which really sucks when you try and answer your kids' questions about "so, are you okay now?" Sorry, kiddos, I just don't know. I'd like to think so, but it really is pretty up in the air because of how angry my cancer has been this whole time. And the rest of my life is going to be one big unknown.

(On an aside, this brings up a whole host of weirdness regarding how to think about yourself and answer people's questions. How do I know if the treatments worked? Am I a "survivor" now? I don't think that I am. I mean, I survived this horrible year of treatment, but I don't think that I get the official "survivor" label until I've been cancer-free for 5 years. DO YOU KNOW HOW LONG THAT IS???!!! How do I know that I'm better? How do I know if the cancer comes back? Basically I've been told, if I'm still alive in 5 years, then the treatments worked. Awesome. For the rest of my life, every time I feel "bad," my first inclination is always going to be that the cancer is back. Again I say, awesome).

In two weeks, I'm scheduled for another mammogram. But this is only on the non-cancer (right) side. The left is too radiated right now for a mammogram (or any other scan) to be useful. Another mammogram (both sides) to follow in 6 months, with additional breast MRI then, and every 6 months (maybe 3) after.

Then I have a CT scan in 6 weeks to assess the "spot" on my kidney. Hmmm, thought it was my liver? "Oh no, we've decided that one is a cyst. Now we're concerned about the spot that's growing on your kidney." WTF???? When did we have this conversation???? Never mind, I'm actually past the point of caring. Schedule the CT scan and then we'll talk about it. Good times...

After the CT scan, I will have another appointment with the chemo doc (who, after you complete your treatment regimen, becomes your long-term care physician) to talk about the results. There will also be a blood test to check all my levels. And they are going to do a thyroid check because she thinks based on how I feel right now that it's possible that chemo has really messed up my system. No think??!

I also get to add another doctor to my team. There is strong discussion about having my ovaries removed, so I need to contact the surgeon who specializes in this to talk about it, and hopefully get it on the books soon. Better be before December 31st is all I can say. I am NOT paying any more yearly out-of-pocket maximums! Two years of that was enough for now, thank you very much!

I get to continue taking the daily Tamoxifen dose because I appear to be doing fine on it. Actually, it's because I never looked up what the side effects are so I don't know what to complain about. She said it is probably a good thing that I'm blaming some of my current ailments on the residual effects of radiation and/or chemo and don't know enough to blame them on Tamoxifen.

The radiation burn hurts (deep down, through layers of skin), and is continuing to get exponentially worse each day. This is expected, and will likely continue for about a month before turning the corner and starting to heal. How many times can I say, awesome?! It's beautiful...this is about 1/4 of it. Was really funny when the girl child asked, "mom, why is your skin so red?" I just stared at her until she figured it out.  

My "discharge" instructions from treatment include the following phrases:
(1) No alcohol consumption
(2) Don't gain weight
for the rest of your life.
(or something resembling these...I can't find the form to verify the exact wording). Why? Because my cancer responds to estrogen (estrogen positive) and alcohol consumption and weight gain encourage the production of estrogen (who knew?). I am also on Tamoxifen, and discussing removal of my ovaries to further limit estrogen in my system long-term. What is really funny about seeing these statements in print is my reactions to them.
(1) Shut up, I will be having a mojito to celebrate the end of this LONG and PAINFUL year. Maybe TWO!
(2) It's your fault I've gained weight!!! All the damn steroids, and treatments, and throwing me into chemo-induced menopause, and should I continue? UGH! 

Oh, and she laughed at me when I said that I was scheduled to go back to work on the 1st. Laughed. I believe that the words she used were "mentally unbalanced." (Honestly, if she could have committed me right then and there, I think she would have. She's already called twice since I've been home to access my mental well-being and offer phone numbers of therapists. I'm sure this had nothing to do with the complete breakdown I had in her office). There's a giant form you have to fill out every time you meet with the doctor listing every imaginable symptom you could be experiencing. I always joke about making a big circle around everything just to cover my bases. Today, I was actually reading some of the options: feelings of anxiety...anger...thoughts of violence toward others...hmmmm, I believe this process HAS made me a little angry. Can't imagine why???!!

On a positive note, it's been suggested that I must have a party to celebrate the end of the day-to-day madness of this cancer. I concur! However, seeing as how there is no Katy Perry concert upcoming that we could all attend together, I'm pretty sure that I don't have the time, energy, or $$$ to organize such a fete (though perhaps my insurance company would like to kick in some cash). And I'm surely not cleaning my own house to have you all over. I love you, but maybe not that much...not right now. Did you not read the paragraph above :violence toward others?? So, if there is someone out there SUPER inclined to be that person, feel free. I'll be there! With my Katy Perry wig. And I will be drinking a mojito!

1 comment:

  1. Hi there! I just got reading through a few of your posts. I am involved in the cancer community and had a quick question for you. I was hoping you could email me back when you get the chance. Thanks! - emilywalsh688@gmail(dot)com.