The Cancer Song

So I am speaking with my little Madeline on our way home from school yesterday when I explain to her that her Mema (grandma) has cancer too - but in her lungs. We chatted about this for awhile, since I recently explained how her Gma Nellie has the same thing, when she blurts out with this: 'Cancer Cancer Do Not Stay! Cancer Cancer Go Away!'. She obviously took it upon herself to replace 'rain' with 'cancer' - all on her own. I tearfully complimented her creativeness - and now she sings it quite alot. Pretty deep for a 5 year old.

I'm feeling very hopeful about my upcoming procedure. A little chaotic in my brain as I plan to be gone for 6 days, but good. I've got people lined up to visit me already - so thank you!!! Speaking of visiting - our trip to CA was a long drive, but so worth it. I'm so glad we went - and I'm feeling so helpless now. I'm feeling that a lot lately come to think of it. Wish we were closer to visit her more - to be around PJ's family more - it was really lovely to hang around with them. They've got some pretty heavy shit coming up too here next week - which reminds me we ALL have shit we're going through, right? I don't know if it's my age, or what, but it just seems like we all are dealing with way heavier shit than people our age used to have to deal with. I mean, maybe I'm being naive - I don't know. But it just seems like the people I am surrounded with, my family and close friends, have an awful lot of serious heavy stuff on their plates as of late. Not sure if it is a test of faith or what, but is seems damned coincidental. In any case, I wish we could be there to help more. My mom is going through some challenges now too with her cancer recurrence, and I just wish I could fix it. I want to fix it all. My stupid cancer is keeping me from being 100% there for others, and that just plain pisses me off. I remember talking with my Pastor early on in my diagnosis about how having people help me was something I was not real good at, and she explained to me it was was 'season to receive'. I get that - I got it. But enough already. It is clearly other people's time around me to receive, receive from me, and I just can't seem to get to everyone. I know, it's not about me - but it's hard to be Christ hands and feet upon this earth when I'm sitting in CTCA for 6 days. But, maybe that's exactly where I'm supposed to be. Maybe we don't get to choose, much less be aware of the people we minister to. The people we come across on this earth that get something from us by simply watching us, overhearing us, witness us show God's love to others on this earth. Guess I needed reminded of that. I just want to take care of my mom. She deserves that, and I can't take care of her in the way that I want to.

On a lighter note, my fabulous friends in Phoenix have planned something rather awesome.
They are doing a benefit for me Nov 23rd called 'Comedy for a Cause' at the Improv in Tempe. Way - way - way back when, I headed up the house improv group there, and I can't believe how many people are showing up, donating their time and awesome talent, to come out and do some stand up for me. They've got a silent auction going, and it's going to be so frickin awesome - I am humbled by their generous spirit in putting this together. They have a Facebook page for it as well, Dina Mountcastle Benefit 'Comedy for a Cause' for anyone wanting details or to just be nosey and poke around. This just baffles my mind - that people, some of which I haven't seen in like, 20 years, are showing up for me in this manner. With everything that is going on in this world, especially now, to see the human spirit rise in this manner, and for me? For anyone? It fills my heart like I am unable to explain. We do not realize how many people we touch in this life - and I was reminded this past weekend in CA that the 'ripple effect' we have with each other on this earth is very, very powerful. What one person, one situation can put into motion - just by showing up for someone, by calling, by emailing, by frickin just smiling at someone, is mind boggling. We make a difference. Everyday we do.

Alright, enough heavy shit for this evening. I am off to bed. PJ and I have our first Parent Teacher Conference tomorrow morning for Madeline and I am so eager to hear what she has to say. I will finish off my evening here with a good episode of 'Hoarding' - embarrased to say that I am addicted to this show!!!!!

God Bless -

Nothing like a 10 1/2 hour drive.....

So here we are in Clovis, CA. PJ's grandma took a drastic right turn into a more medically assisted home, and we thought we better get here while we had the allotted time to do so. We arrived about 4am on Sat morning - and considering it took us 10 1/2 hours to get here, the girls really did quite well. Ginger had had quite enough of her car seat about 6 hours in, and to tell you the truth, I didn't blame her. I ended up in the back seat of the van holding her while she slept for the remainder of the trip. So sweet. We went and saw grandma yesterday and I have to say, she is still has her sharp moments, she is a hoot. We got a chance to see her, chat with her, the girls saw her and Madeline colored some pictures for her - it was really nice. It's also been so great to see PJ's side of the family - makes me want to live closer to them. How blessed I am to have married into a family that is so awesome - they are just good people. The kind of people you want to hang with - they are certainly on 'the bus' if you catch my drift. PJ's cousin has 2 little girls around our girls ages so they have just been in hog heaven. We were getting ready last night to go to a little Halloween thingy at the local zoo for the kids, literally getting in the car to go, when Ginger had another one of her seizures. This one was not as dramatic as her others, but a seizure nonetheless. I can totally get through them now, needed a little help as I was literally talking her through it while walking around PJ's cousins front yard, but once I've got her 'back' I still cry in just fear. I hate that she goes through this, and just pray that this will stop one day for her. No fever with this one, so I am at a total loss. My gut is telling me that she had a long day with the drive and all, not a lot of food, not a lot to drink, and her body just said "stop! we are stopping now because I need sleep!' and that she did - slept for 13 hours straight. You'd never know it happened looking at her this morning. Madeline went ahead with PJ's cousin and their beautiful family, and she even got to sleep over at their house, which was very cool for her. PJ and I were able to take Ginger back to the hotel and nurse her back to health. What a ride. What a wild ride. This parenting thing is quite a ride. I am reminded once again how I was picked, out of many many others mommy's out there, picked specifically to be Ginger and Madeline's mommy. I know them like no other, I can read them like no one else can, and that 'gut' feeling I get about them, the feeling that came to me yesterday that told me moments before the seizure that she was going to have one, is a gift from God. These moments are reminders to us of why were are placed on this earth. Brings to mind for me the message from Pastor George's sermon last Sunday - he said "consider this - we are not human beings on a spiritual journey, we are spirit beings on a human journey". Considering this possibility can completely change the way you look at people, look at EVERYONE. It's like you see the spirit inside of them, and not their human form. I know, heavy for a Sunday afternoon, but I needed to share. Try it out next time your just walking down the street or through a store and look at other people with this in mind. Look at your children with this in mind - frickin mind blowing.

I'm feeling fine, was having some upset tummy issues on Thurs and Fri, which they said would happen considering the 'coils' they placed in me during the 'mapping' but that has passed (thank God) and I'm feeling much better now. OH - I totally forgot to mention this about the mapping procedure - when they wheeled me in for the procedure, I see this young man (yes, I said 'young man' oy) who took my xray pics a couple weeks prior - he looks like he's maybe 15 years old, total skater look to him, and he is the one who asked me if I wouldn't mind listening to Led Zepplin during the procedure. Once I was placed on the OR table, he pulls up my hospital gown and shows a look of disgust when he sees I still have my underwear still on. I tell him that I asked and was told it was OK (another problem with my scary intake nurse) so one of the female nurses helps me take them off, then, he is the one to 'shave my groin area'. Ok - I am going to sound a LOT naive here, but I think I thought my groin area was on my thigh, why? I have no idea. Well, it's not. It's in your bikini area, and now I have this prepubescent guy shaving my bird. Then, he just leaves - went to get something I guess, so I say out loud "and here I am! my bird just hanging out for anyone to see!". Just another layer of 'what else can I please experience to add to my cancer stand up act' I suppose. Oy. I would love to say I will get a bikini wax before my therasphere procedure, just to impress them, but I've had one of those before and no frickin way - that was more painful than anything I've ever experienced in my life. No way.

Well, my family is napping now on our hotel beds, looking so beautiful and peaceful - I watch them and thank God for my life, my family, my extended family, and the fact that we are visiting here right now. I'm so thankful for PJ's grandma, what she has taught me, what she means to PJ and his family. She has no idea the good she continues to do by bringing this family together. Just by being on this planet, people accomplish so much without ever knowing it. Spirits on a human journey. Way cool.

God Bless -

I've officially been MAPPED

Well, it's official. I went through the mapping today and it was a success. YAY! Very strange and interesting procedure though. I would be lying if I didn't say I was nervous - I was. There are many cool things about CTCA, but one for sure is they are always on time. So arriving and going right into prep was refreshing. Also gave me no time at all to process things - which isn't all bad either. My prep nurse decided to train a new nurse on me while putting in my IV and I've decided, I'm not going to be so nice about this anymore. This was the most painful part of the whole thing, this trainee poking me - they ended up putting it in my wrist. I've been poked a lot - a LOT - this was the only time I almost started crying it was that bad. PJ kind of reprimanded me for 'being too nice' about this stuff, and ya know, he's right. I'm not going to let anyone practice on me - they can practice on someone else. In any case, IV was put in, my nurse was way too chit chatty with me - but I was quickly on my way. As I was wheeled in, one of the nurses said 'what kind of music do you want to listen to - rock, jazz, blues - your choice'. So, we had Led Zepplin playing throughout the whole procedure - very cool. I was also awake through it, sedated cuz I couldn't feel anything, so it was kinda like I was awake, but didn't care at all. It took about an hour, they go in to my femoral artery on the right side with this camera catheter thingy, take tons of pictures, put in the coils to block blood flow to my stomach and bowels, then once I'm done I'm whisked off to get a PET scan for them to take more pics of me with they dye in me to see where it all goes to make sure they know where everything will go when the y do the real thing. Amazing. Then I just had to lay there for another hour or so. They put in this star thingy to plug up the artery, so to make sure that all that heals, I need to lay still for a couple hours. Uncomfortable to lay flat on your back for that long, but this too shall pass. It really went just perfectly, I was so relieved. I think I was most nervous because I didn't know what to expect - didn't know what it was going to be like. But as soon as I found myself overwhelmed with fear or anxiety, I would just put all my trust in the Lord and turn all my fear over to him, and it totally lifted it right off my heart. Amazing.



So my official procedure will be on Nov 2nd - exactly 2 weeks from today. I'm so excited. Bummed to know I have to spend an entire week away from home - but, I'll do it and get it done and overwith. My mother and niece watched my kids for me today, and they will return again with my aunt from Los Angeles when I go in on the 2nd. How blessed I am to have friends and family to step up for me like this - I can't even begin to express how thankful I am to have such a wonderful community of friends and family that help me and make all this work for me. I'm going to be up for visits from anyone caring to visit me in Goodyear for those 6 days - PJ will not be able to stay with me the whole time, so if anyone is up for a visit, amazing lunch or dinner - please let me know. I'm game.



I really wanted to write more, but I am literally falling asleep as I'm writing this. Been a long day with a whole lot going on. I'll write more tomorrow, just wanted to bring everyone up to speed. Thank you friends, thank you family, thank you God for continually holding me through this journey. Hand in hand we continue to go. Oh - wanted to share a pic of my fabulous kids from this past weekend. They are just frickin awesome.



God Bless -

To Shave or Not To Shave, That is the Question....

My hair just keeps thinning out. It's been over a month since my last Adrimyacin push, yet, it continues to fall. I guess I'm lucky that I have a lot of hair anyway. My awesome hairdresser recently told me 'now Dina, you have as much hair as everybody else'. I went to her to see what she could do with this, because obviously growing it out isn't going quite as I had planned. She cut it short again and I have to admit, it helped a lot. But it still falls out. The drain in my shower has this light covering of hair each time I shower. I've actually not showered for a day thinking 'maybe if I don't shower and wash it, it will stay in!'. Silly. I am hoping that if I wait long enough, it will stop thinning then start growing back before it is really noticeable. Now that I'm typing this I feel really silly. Am I really spending this much time talking and thinking about my stupid hair? I've done this once already - and I elected to just frickin shave my head when it first started coming out. This time, I just don't want to. My poor bathroom is just coated with hair. It totally affects my mood when I have to start my day putting handfuls of hair in the trash can. I wish this didn't matter to me so much, but it does. I've spoken to Madeline about it - and she is just so matter of fact about it. She says 'this cancer just needs to go away mom! cancer is NOT good!' Which of course brings me to tears that she knows this at age 5 - then she asks me why I'm crying and I tell her that sometimes when mommy is so full of love for her, I get so happy that I cry. She smiles and hugs me. This whole conversation occurred the other day as I was getting her out of the shower. So perfect.

Fall break has been lovely. Getting up on our schedule. I did have a run in with a rude employee of the YMCA where I work out - and I noticed something about myself that I found very interesting. Anyone who know me knows, when someone is disrespectful or rude to me, it is all I can do to not rip that person a new A hole. Seriously, I don't tolerate people like this very well AT ALL. So when this situation presented itself to me yesterday, I found myself going to that same place. I started getting all worked up inside, getting very confrontational, maybe a little bead of sweat or two - you get it. Then, something came out of my mouth that I swear I don't remember giving myself permission to say. I said "listen, I don't know what has happened here, but if I have come across rude and caused you to act this way, then I apologize, that was not my intent". wha???? Dina - back down? Dina - take the high road? Who the hell was this person talking? Now, this fell upon deaf ears, but the thoughts I HAD in my head did not come out, this did. Weird. I thought about this throughout my workout, and I think I realized, we, the collective women 'we', suck it up so much sometimes, we don't vent our frustration or anger or disappointments so often, that when the poor uneducated soul at the front desk of the Y gives us the stink eye, we totally unload all this shit on them. It all comes pouring out - like we needed an excuse to let it out, and this was it. I didn't do it this time, which was good. But I realized that I need to let out this frustration or whatever I have been feeling before it gets to this point. If something is bothering me, I'm going to say it. If I get hurt my something or someone - I'm going to tell them. It is NOT easy - it is easier to take down the Y employee - but I am seriously going to start working on this. Thank you - Miss Uneducated YMCA Employee for the self-enlightenment. (hey, I'm not losing my sarcasm - that would be pushing it)

I've had a great time hanging out with my kids. We went and painted pottery today - total blast. Total mess, but a total blast. Then grocery shopping, lunch - the normal stuff. So cool.

I spoke to CTCA about how I feel weird not to be taking anything now, and they said they need me really healthy for this procedure - so to chill and not worry about it. I breathed a cautious and semi relieved breath of fresh air - and I am trying to just embrace the fact that for the next month or so, I'm not going to be on any drug of any kind. I mean, I will be on chemo right after the procedure, but until that point, I'm really enjoying not being on anything. That hasn't happened since I was diagnosed - and that was almost 2 years ago. Wow. Isn't THAT crazy. I just want, so badly, to have an opportunity to have my life back from this disease. As much as I try to conduct my life and raise my kids and be a wife and mother and member of my community, I would be lying if I didn't say that I'm trying to be all of these things AROUND cancer treatment - and that is just getting old and tiring and frustrating. I am being realistic about this upcoming procedure. But my hope is, this therasphere will blow this metastatic disease out of my liver, then I will be able to control the disease with another estrogen blocker from coming back anywhere else. That is my vision, that is what I am holding onto - because that is what makes logical sense to me. Is cancer logical? No. But they know and awful lot about my kind of breast cancer, so I know I have that on my side.

I hope I'm not sounding all dark and serious, I'm not in a dark place at all anymore - thank you Jesus. Where I am mentally now is like night and day compared to where I was a month ago. It was difficult for me to switch my care to CTCA, very difficult. But I now know that I needed to move in the direction that felt right in my gut, and this just feels right. I sacrifice me a lot in this life over the guilt I feel for others, and this just couldn't be one of those times. There is way to much at stake here for me. I qualified for this protocol for a reason, I know this. I am where I am today for a reason, and I was where I was for a reason as well. I have no regrets with where I was, or where I'm headed. No regrets at all. I have felt led all the way. However, I also believe that we need to hear Gods voice (or our gut feeling, whatever you want to call it) and follow that lead, give it that push, then everything falls into place. It's amazing what one move on our part can cause - just one simple phone call can send us into a completely different direction. Just one move - sometimes that's all it takes. Sometimes that one move is the hardest to make of all. But that is where trust comes in, trust God, trust your gut.

God Bless -

Up For Mapping anyone?

Wow - I can't believe how long it's been since I posted. I think my trip this past week to Phx has taken me this long to recover from. I went down on Wed of last week for a couple things actually - had an appt in the am with my plastic to review my healing status - seems my left boob is still hanging onto scar tissue for dear life, although he said it is dropping. He also said that I don't see this because I see it every day, but to trust him, it was dropping. OK. I just see that one is higher than the other - wouldn't it figure. AND it's the left one, the one that was FINE!! The irony, really. In any case, they are way more comfortable than the expanders, I'm just glad to have those out and these squishies in. He said it really takes 3 months for them to settle in correctly, so we'll see what time brings me. He did say that if the scar tissue didn't release he could always go back in when he does the final piece of reconstruction. Now, remember, I don't use the "N" word (top of the boob word) because it totally sceeves me out - and to be honest, I don't really know if I want the final piece of reconstruction done - part of me is just fine like this. Kinda tired of the whole thing ya know? But I am morbidly curious to see how this works - that is what is driving me to complete this process more than anything - not my need for 'tops' because, hating that word my entire life, it's really kinda cool to not have to worry about such things in t-shirts or anything. We'll see how I feel when that time comes around. My curiosity may just get the better of me - even though I'm told I have to walk around with 'caps' on for a time - to make sure the 'tops' he forms out of scar tissue don't fall off or anything - why couldn't they just take some pencil erasers and hot glue them on? I can't feel anything there anyway. I could do that myself, it would be way cheaper. Hmmmmmm...

So my next appt on Wed was at CTCA and I was caught in that horrendous storm on the way there - I now know what the term 'biblical proportions' actually looks like - cuz that storm was of such - frightening and cool all at the same time. Made it safe and sound and met with the radiologist as he needed to give me his stamp of approval for this whole theresphere protocol as well. He was awesome, and did indeed pass me through to the procedure. Then I went and had a meeting with my oncologist, got a blood draw, ran over to imaging to get a quick chest xray, then back for my Zometa treatment. I'm still getting accustomed to this new team, they are very nice - some have 'the face' on, and some are genuinely nice - I think I'm just one of those rare people who know the difference - but it is all good. I also think it is difficult for another facility to just pick up where someone else left off in their treatment - trying to make their way through the paperwork into what THEY know as routine is a process, in short, I'm trying to move with the cheese here. So far so good, just frustrating a times, for them as well I'm sure.

Ended up crashing at my moms place Wed night as I didn't get back to her place to pick up Ginger till after 6pm - and we weren't sure what the weather would bring me for the drive back home up north, so I stayed there. Needless to say, it was a long day. Good news is, I'm officially scheduled for my 'mapping' procedure. It will be on Tues the 19th of Oct at 8am. This is a way bigger deal than the actual procedure, because they will be doing a test run with injected dye to see if the procedure will actually work, or what they need to do to make sure it will work. Let's just pray for the mapping to reveal everything they need it to to make this work. C'mon body - cooperate. I feel good about this, really good. I am actually hopeful, which I haven't been in awhile.

I did put a call into my advocate to discuss the fact that I'm not taking anything right now and that feels really strange. Since this all started, I've always been on something. Chemo, estrogen blocker, something. Now? Nothing. Doesn't feel right. I mean, logically, I know we are focused on my liver - but what about the rest of the cancer? I need to protect my bones still and I know I just had a Zometa treatment, but that isn't a 'cancer fighter' that's more of a 'bone strengthener' - so I want to discuss this. I just saw an article about a drug called Faslodex for women with advanced breast cancer. This is an estrogen blocker that has just been approved by the FDA for a higher daily dose and has had, so far, pretty positive results. So I'm going to ask about it. We'll see. Don't know if I can be taking this when this procedure is on the horizon, so I thought I'd ask.

I've been working really hard at just being present. Sometimes remembering to do that is just the furthest thing from my mind, so I've had to really focus on being better at this and it is working. Hugging my kids, kissing my husband, talking with my mom, all of these things are so frickin awesome - they are even more awesome if I can be aware enough to be in the moment with them - 100%. I know the last couple of months, my brain has been so stuck in the 'what if's' and the 'why me's' - when this happens, I lose out on the present moments - and those moments are so amazing. I am so blessed to have the family I have - to have the friends I have - to have the community I have - to have the life I have. Believe it or not - watching my kids faces last weekend while they watched Storytime Live at Tims Toyota Center was probably the coolest thing I've experienced in quite a long time. Normally, I would have been wrapped up mentally in 'what time are we leaving, what are we going to do for dinner, what time are they actually going to get to bed, what time are we going to get home, this is running later that I thought' blah blah blah. I would have missed it completely - but not now. This state of present consciousness is not habit - it's work - and takes a hell of a lot of self reminding, but I'm slowly disciplining myself to do this, and it's extremely rewarding. At the same time, I am constantly giving thanks to the Lord above for all the wonderful things I have in my life, everyday. Whenever I start feeling bad, I try to make myself smile and give thanks, and my feeling eventually does catch up. Again, practice. Practice makes perfect.

Well - I'm off to tend to my feet. They have not completely healed from the Xeloda yet, and are hurting today so I'm going to soak them, put on some cream and some soft booties and rest. Yesterday was a day full of awesome family errands and soccer games and yard work - today I am tired, and just, well, out of it. Hard to describe, but I'm just out of sorts today, can't quite pinpoint it - and I can't even use tired as an excuse because my husband gave me a nap today - so who knows. We are on fall break now and I'm actually going to get to the gym tomorrow. Haven't been in over a week and it's driving me crazy. Looking forward to a week of life on OUR schedule and not school schedule. Yay!!!

Have a great week all - God Bless.