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I have breast cancer and am a snappy dancer

Sunday, January 29, 2012

Getting my BRAIN back in the GAME.....

Well the results were as follows: left side seems stable still (yay!) but the right side now shows new small tumors. So, I am going to have to have more quadrasphere procedures, which, I have to admit, made me literally feel like I was going to throw up as I was speaking to the interventional radiologist. Now, they did tell me from the get go that it was typical to have 'multiple' treatments. Ok. So I'm not the exception to the rule, which I really wanted to be, so that is ok. At least this is normal, and I take some sort of sick comfort in that. Next, I really thought the new tumors on the right side was scary information, but then it was explained like this by my case manager. She put it this way (paraphrasing of course): it takes like a million cancer cells to show up on these CT scans, and the quadrasphere procedure not only kills the cancer cells, they apply it to the blood supply of the tumor, cutting it off - essentially killing it from both sides. Now, that blood has to go somewhere, so they figure what is showing on the scan now has always been there, they just couldn't see it till now. Again, I take some sick comfort in this as well. Oh, and did I mention that treating the left then the right is considered ONE treatment? Yea, didn't know that either. And I'm probably going to need 3 - count them - 3 - treatments. Which means 4 more times for this crap. Breathe Dina, breathe. I can do this, I don't want to do this, but I can do this. And, I found out the chemotherapy they are using is Adrymiacin - otherwise known in my unfortunately every growing breast cancer community as 'the red devil'. No wonder I've been so sick!!

Now, I just need to vent here a minute- because this last treatment was worse than the previous, and I now have more information as to why. The tumors they treated on the right side of my liver were very close to the very edge of the organ, which was then very close to my diaphragm, very close to my lung. I just spoke to a interventional radiologist, as I've been trying to speak with MY interventional radiologist (I just like typing that out a zillion times) but he never called me back after 2 weeks so I finally got this great guy who called me on Friday night around 6pm. He explained this to me - which probably explains why I've had these sharps stabbing pains in my side when I breathe in deeply, severe right shoulder pain, I've basically had pleurisy for the past week. Do you know what I thought it was? Tight muscles or me just not moving enough - so you know what I've been doing all week? Planting my ass on the treadmill at the gym making myself push to to the weight loss setting and 3 miles in 40 minutes. With pleurisy!!! Isn't that hysterical!!! There I am, having trouble breathing thinking 'wow it's hard to breathe, I better adjust the incline a little higher and work this out'. DUH!!!! So, those of you out there getting this procedure, heads up - ask where the tumors are that they are treating and if this is any possibility so you know what to possibly expect in your recovery time. And then if you feel those things - don't get on the treadmill!!!!! Oy. Seriously.

There, I feel much better now. So now I have to go in for an ultra sound on my gall bladder (still trying to figure out why that is important to check - Sean?) before we schedule another quadrasphere. So I figure I'm clear the month of Feb, which, to be honest, I'm quite excited about. The more I do this, the more I'm learning, that's for sure - just a real shitty way to feel while I'm learning, ya know?

I'm not sure how I feel emotionally. Sad I think, at first, and I'm working through that. I really wished I would be the one person who miraculously could have been done just after one procedure. But I am not. It's just that this, this procedure, has been the worst throughout all of this journey - and I will do it again, I will, but I really gotta work super hard and getting my brain back in the game, cuz it's not right now. I just want to feel better so I can run and jump and play with my kids. I want to feel better so I can run and jump and play with my husband ;-) and such. It's like just when I start to feel better, here we go again. And they haven't done many of these at CTCA so it's not organized or anything, again, very frustrating. All of that put together kinda puts you into a weird mindset, not a 'giving up' mindset, but an exasperated one I suppose. I asked the doc at the results appt 'how many times do I have to do this?' and he responded with 'this isn't a cure you know, we are just trying to extend your life as much as possible'. Ouch. Do I know that from his standpoint that this is true? Yes. Do I 'feel' like this is true? No. I'd be lying though if I say I haven't thought these thoughts: 'I don't think it's the cancer that's gonna kill me, I think it's the treatments'. This is just an ass kicker, and it scares me. Do I keep doing it? My oncologist is so gung ho about it, and I wholeheartedly trust him, so I take comfort in that. They did say there is a new infusion chemo that they have in their back pocket if we find this isn't working, so there's that. I just wish we could find it, ya know? I wouldn't mind having chemo every 2 weeks - or having quadrasphere every 6 months, if we knew it was keeping this thing at bay - ya know? I just want to find what it is so I can wrap my brain around it, tell myself to suck it up and then just frickin do it. I hate this flip flopping around trying all this different crap - hate it. Am I blessed that there are things to try? Lord yes, please don't think I'm not grateful for just having options, and maybe I need to remember that a little more. I just want something to work - finally. At least for a little while.

On a completely different note, I am actually able to pull my hair into this teeny tiny ponytail - I haven't been able to do that since I cut it all off way back in 2009. Kinda cool. And also a pain because it takes me way long to blow it out now. Am I complaining about having to DO my HAIR??? Hell no!!! Happy Happy Happy to just have hair, thx.

Still working on the whole trust thing. I do trust God, I do trust Jesus. I trust whatever they have in store for me - fact is, they aren't done with me yet - cuz I'm still here - walking around - so I just try to remember to make it count. To not waste time with BS, to make sure my kids know to be real and genuine and loving, and to make a difference, in whatever way possible. When I find myself wallowing in my own crap I make myself get up and get out and help someone else, that always just seems to put it all in perspective for me. Always does. And I find I hear the Holy Spirit working inside me much clearer when I do things this way. Some days it's easier than others, but for the most part, it just takes practice. So I'm still practicing.

Reading 'Battlefield of the Mind' by Joyce Meyers - which I highly recommend. And try to get it off Amazon, not her website. No offense, but since they now know me from her website, they will NOT LEAVE ME ALONE! I just wanted to read the book!!! Jeesh. Not that her ministry doesn't do great things, it does - but - OY. Anyway, I digress - I'm finding this book most helpful in fighting the things that come into my mind. About myself, others, strangers - you name it. Quite remarkable concept - so check it out.

Have a great week - I'll keep you posted.

God Bless -

Friday, January 13, 2012

Scared - Trust - Breathe - Scared - Trust - Breathe

So Happy New Year and Merry Christmas and all that crap! We actually had the most beautiful Christmas - I was exhausted because of my recovery yes, but also because my girls did not go to sleep until 11pm Christmas Eve then PJ and I (mostly PJ I have to admit, but I helped at the end) had to set up the 14 foot trampoline that Santa somehow fit in his sleigh (luckily no questions emerged about this) in our back yard. We finally got in bed around 2:30 am and the girls were wide awake around 5. But, such is the life of Christmas time with small children. It was a blast, yawning all the way through it. Then we decided to celebrate New Years on NY time, so we were in bed shortly after 10pm. Nice. And yes, I sound like I'm 80 and don't really care to be honest. I own a shawl too by the way, and use it on occasion.

My niece from back east came and visited us just after new years and was here for 10 days, so I've really felt like the holidays are just now over for me - as I put her on the shuttle the other night. But here I sit at CTCA just finished my CT scan and am awaiting results and a check up with my doctor. I was so pumped up by the results last time, I'm trying to not feel like 'this is where the other shoe drops' for this one. Why do I subconsciously feel like that? Is it my innate nature to expect the worst but hope for the best? I hate this part - it doesn't get any easier, cuz I've been in this 'waiting' mode many, so many times before - I keep thinking I should be used to it by now, but I'm not. I just repeat the same things in my head that I always need to be reminded of - things like "I'm not going to let scan results determine how I feel' and 'nothing will ever shake me from my faith - not even cancer' and 'Father God will take care of me no matter what the results' and 'I will continue to ask for healing because that is what His word says he wants for all who believe in Him' and 'you still have to get everyone to school and work on Monday so let's just get in there and get this done so I can get back to my life thank you very much!' It doesn't get any easier. Now that I mention it, it doesn't get harder either, which is a blessing I guess. I think I receive information better now that's for sure - whatever it may be. My trust continues to strengthen which is also good. It takes work though that's for sure - I can feel it in my heart when I haven't tended to my faith like I should. I feel a distance, a kind of 'jaded independence' if you will. Don't like that. So I get back on my knees at my bedside each evening, that works for me. I like to fall asleep with Him on my heart rather than Mob Wives in my brain, although it is VERY tempting. Church of course, and running my MOPS group which is so near and dear to my heart. I was at a loss as to what to pray about with my girls at night. I knew I wanted to pray with them, but I just didn't have the patience for the 'God please bless my pillow, and my toys, and the Angry Birds game on mommy's phone.....'. I mean that's fine I guess, but they obviously aren't getting what this is truly about yet, and they're little, they shouldn't. So we've started just reciting The Lords Prayer at night with our girls before bedtime and it's been really cool - they totally have it memorized already! Pretty cool.

Anyhoo - I am always so conflicted on how to pray at these appointments. Do I pray for complete healing? Yes. Do I pray for strength in whatever the results may be? Yes. Do I tell Jesus I trust Him and fully commit to know that He knows best and I will handle whatever I get? Yes. Do I pray that this will be the last 'procedure' I ever have to have so I can eventually turn into one of those '3 month check up' people? Holy Crap Yes!!!! I guess there is no wrong thing to pray for - even though they are all different things. I find this part confusing.

I've decided to take some things off my plate to give me a little more breathing room. It's been hard, but so incredible helpful, I'm still getting used to it. I have backed off of my Wed bible study group - just for this semester. I found this last time I attended a class that I was turning into more than just an attendee - and was having a hard time saying NO to other things. So, I'm taking a break. I'm getting ready to back away from another commitment but - and I already know the response here - I'm considering auditioning for a play. I haven't had my acting shoes on in, let's see, almost 10 years? Really? Yikes. So, I'm really praying about it because the role is pretty demanding, as is the rehearsal schedule. I want to make sure I have the strength and energy to commit. We'll see - but so cool that I even want to do this. I am taking a class at the local theater for one person shows - and it's coming along quite nicely. Maybe I should focus on that only for now - not sure. Again, praying about this.

So - off I go downstairs now for my check up. Say some prayers if you could - and thank you all who do anyway for me. I can feel your energy coming my way. Those days when I'm so tired I don't think I can make it up off the couch to change the laundry, but I do? I know that is totally prayer giving me the energy. It's certainly not me!

I'll be in touch - God Bless -

Dina