She doesn't have any arms yet mom!

Ginger says this is why Charlie (our chihuahua) can't jump up onto my lap. I think it's funny.

So, can I say pain? Can I say liver pain? How weird is that to even type out, liver pain. I didn't even know your liver could hurt - so weird. This last week has been painful - living on pain meds, and finally, I think I found the right concoction - 1 pain pill + 2 Advil = BINGO!!! So I did that finally on Sunday and finally, I think I found some relief. I mean, I'm still functioning, I don't want to paint the picture that I'm just lying there in the recliner all day, snickering to myself in a pain med trance and randomly laughing at nothing, I kind of do that anyway (just not in a recliner) I am functioning just fine, it just hurts is all. But finally, relief. Today was monumental - just Advil this morning, and didn't need a pain pill till 1pm. Yipee!!!

Whenever you read anything, you obviously form a mental picture in your mind, and I guess I feel the need to let everyone know that throughout this whole ordeal, I was able to rest in the hospital, and then the weekend day or two upon my return from the hospital - but for the most part, I run around just like everyone else - taking my kids to school, Brittany to her functions, running errands, volunteering, etc. All my stuff and my life continues to happen - despite any 'procedure' I endure. Maybe a little slower at times, but I'm still behind the wheel of my minivan singing Christmas carols with my girls. And ya know what? That's exactly the way I like it. My mother likes to say 'take it easy on yourself' or 'you need to rest more and take care of yourself better' and I guess it's your mom's job to say these things - but, just because I am out being a mother, aunt, wife, friend, member of my community - doesn't mean that I'm NOT doing those things, ya know? I really had to think about this - I mean, I am very, very in tuned to my body - I think most cancer patients are - I know when I need to stop, I know when I need to rest - I know when I can push it a little further and when I can't - and I respect my body telling me these things - I have to, or the consequences could literally be fatal. But, I'm not going to stop living - not ever. And I guess I need to admit, right here, right now, that I am a hopeless night owl. I am my fathers daughter. I will stay up late watching the most ridiculous things on tv, just because. I have no reason for it, I think it's in my DNA. There - I said it - I feel much better now.

Got my Christmas cards out - which, becomes more and more important again as a cancer patient. If people you don't talk to on a regular basis not hear from me with the card, they may think I died or something. I'M STILL HERE!!! CHRISTMAS CARD CONFIRMS IT!!! And I'm so looking forward to watching my girls on Christmas morning. They are really getting it this year, and watching them watch Christmas come is by far one of the coolest parts about being a parent. We have lots of traditions we've started, maybe too many - we have our elf of course, Elfie. Then we do 'What God Wants For Christmas' which is an interactive nativity scene we do together as a family and it's so awesome in teaching my kids about the birth of Christ - I wrap Christmas books and we open one a night and we read it together by the tree, we sprinkle reindeer food on Christmas eve out in our front yard. Yes - I am Christmas CRAZY. And now my kids are too. Something must be working because I've caught PJ singing Christmas carols like 3 times already, and that NEVER happens. Welcome PJ - welcome, finally, to my madness. I ordered one of those microphones that plays Christmas music and also turns your voice in an elf voice - have you seen this thing??? It is hilarious - PJ and I haven't even shown it to the kids yet - I hid it in our closet and we were in there tonight playing with it - he was trying to sound all Barry White sexy in this elf voice, and I grabbed it and started saying 'I'm a chemo elf, my liver hurts' in this elf voice. Hilarious.

I digress - so now I wait to see if they scan me or not - I guess there is a possibility they will not, which wouldn't make much sense to me. How else would they know if this is still working or not? In any case, waiting to hear back from scheduling to book that next appt. Knowing I get a break brings me sweet peace. We need to allow my liver to heal and repair itself after these invasive procedures. Liver failure was always a possibility with quadrasphere, something I didn't mention before, but it was. Still is I guess since these chemo filled beads continue to release for 2 weeks following the procedure. But again, I am careful to respect my body and the messages it sends me on how to tend to it.

Each Christmas since my diagnosis means something different to me. I continue to grow in my relationship with Christ, and I continue to draw closer to my family, and what 'holidays' are really all about. I look back at Christmases past, and can totally see how I just didn't 'get' it then, but, in retrospect - I only knew what I knew. I was all about buying the right gift for the right person, going way overboard with my kids, making sure the pictures on my Christmas card were the best, and I would be so stressed, so pissed off all the time, rushing trying to get everything done, and just making everyone miserable around me - only to lead up to Christmas morning and suddenly just expect everyone to 'hurry up and enjoy this!!! it's Christmas!!' And, I'm ashamed to admit it, but I used to really be concerned what people were getting me for Christmas! Now, I don't have this mastered yet, I'm still a work in progress, but this year I'm just so excited to be with my family. I look at my kids faces, I look into the eyes of my husband, I hold my mothers hand in mine, and I know it sounds corny, but I'm just so blessed to be in their presence - to spend Christmas with each other - and share food, smiles, tears, gifts, love, each other - that is what I am just so excited about. I just love Christmas, and each year, the reason is just a little different, a little deeper from the year before. Sounds like a God thing to me.

Merry Christmas

Dina

Oy, my liver - that smarts!!

Well, 2nd quadrasphere is done. I have to say that I was really glad that I knew what to expect this time, and super glad I was put under for it as well. However, wanna hear something ironic? Remember the whole morphine pump that was supposed to make everything better? Well, it works much better if its plugged in. Can you believe it? I really think this is hysterical to be honest. There I am, pushing this button, like 4-5 times, not hearing anything, and nothing happening because, you got it, it wasn't plugged in. So, once we got that figured out, then it did seem to help me quite a bit, however, everytime I would wake up out of a morphine sleep, I'd feel really great and rested, then immediately have to throw up. So I once again was sick like, 3-4 times this time again. But again, I knew what this felt like, so I was ready for it, and moved right through it. I must admit as well, that I prayed all the way through these moments too, something I didn't do last time because I was way too scared. This too helped. By Fri morning, I knew I had to switch from Morphine to Percocet - and that seemed to do the trick. No more throwing up, thank God. Now, the pain, the liver pain I'm experiencing this time, is much more intense than the last time, so I am trying to manage that.





Also, this is strange, but everything I drink tastes sugary - makes sense I guess considering what the function of your liver is - I just think it's so interesting how this organ, and having major trauma happen to it, can effect your overall body operation. Managing this pain has been a challenge this weekend, a real challenge. My husband, children, niece, mother and friends who have watched my kids and fed me have literally been a God send. Where would I be without these gifts God as given me?





I'm going to try to get back into the saddle again tomorrow, but I am still not moving around real fast yet, which is just real frustrating. The deal is now that I will go back in a month, get scanned, see what the deal is, and 'take a break' which, is fine w/ me. I will welcome a break, if it is safe for me to do so. My doc says we need to be careful not to hit the liver to hard too fast because of the possibility of liver failure, minor detail. I just want this thing gone. I'm so over this.





So I've heard from Rep Paul Gosar, and Senator John Kyl, and Senator John McCain kinda blew me off. But the other two are going to bat for me, and I'm thrilled. I keep praying that I will continue to receive this ground breaking treatment, and stay with this awesome team of people who just seem so focused on fighting this thing with me. I get such an 'army' feeling from them, ready to conquer this on my behalf.





I'm fading a bit now, but wanted to check in and let everyone know I am ok, and am adequately medicated, oh my am I medicated. I'll write more later this week.





God Bless -





Dina

Twas The Night Before Quadrasphere..........

Well, here we go again. Scheduled for another zap of the cancer cells tomorrow morning. Pre-op at 8am and procedure at 9. I am so optimistic, it's strange. I'm actually a little excited. I think because I know it's working it a huge part of it, but also because I'm feeling so good these days, maybe for the same reason. Who knows. I'm just full of hope.

Alright, I am scared too. I can't help but be afraid to think I am going right back in there to feel super shitty again, for like, 14 days afterwards - but at least I know what the worst feels like. And again, knowing that it's working, makes the blow a whole lot more bearable. Plus, as soon as that fear creeps in, gotta let God creep right in and take it. Practice makes perfect.

We had a great time at the Polar Express this past weekend. It was so great. The girls were just so excited, and I think the best part was one of the most unplanned things. We got there, had a great lunch at a local diner, checked in to our room, picked up the tickets, played in the snow, got into our jammies, took the train to the North Pole, had cookies and hot chocolate, met Santa, had dinner, then settled in for the night. Then, when we are all tucked into bed - PJ and Ginger in one bed, and Madeline and I in the other, I turn the TV onto 'Its A Wonderful Life'. The 4 of us laid there and watched the whole thing. Madeline asking questions the whole time, and really getting into the story. Of course one of her first questions was 'why doesn't this movie have any color mom? why is it in black and white?' but once we got past that, she was way into the story line. I have to say it was one of the coolest life moments I think I've ever experienced. I am so blessed. I have just the best little family ever.

I need to share a passage from a book I've been reading off and on here for awhile, and this passage is one that I read before I went in for my scan and results of the quadrasphere. It's one of those ironic moments - well, ironic is probably not the right word. In any case, here it is:

'God will speak to you too - straight to your heart. I can't promise everything will be okay. It may be; it may not be. But I promise, based of the faithfulness of God, that you can be okay. Just don't pull up that anchor. And never let go of the rope.'

I just think this is awesome. I needed a reminder like this. I wish I could write more here, but I should probably get to sleep since we have to hit the road by 6am. As of midnight I can't have anything to eat or drink till my procedure tomorrow. I'm starting to think maybe Taco Bell wasn't the greatest choice for dinner before this procedure where I don't eat for 2-3 days. Hmmmm. I'm going to go drink a big glass of water.

I can't thank you enough for your prayers, and if you could spare a few more, send em up around 9am tomorrow, cool? Bring It On!!!

God Bless -

Dina

Joy To The World...the death of cells......la la la la la

So that is the final word after my scan last week - tumors are stable and dying. The awesome word again was used, necrosis which means via Microsoft 'lookup word search': the death of cells in a tissue or organ caused by disease or injury. Praise God!!!! I have to say - it was soooo difficult to walk in there and know that I needed to trust Him no matter what the results, but I give Him all the credit for the results. The left side, where the largest tumor sat like a big fat gross guy (I picture the snot guys from the Mucinex commercials - weird, right?) is dying - and the small ones he shot with the beads on the right side are as well. There was one tiny one that he did not get that was on the right lower side that is a bit bigger, but that is what they will address when we go back in and shoot it again next week. I can't imagine they will just go in for that tiny one, I have a feeling they will shoot the left side again, which, I am totally prepared for now. After discussing how awful this first time was, we came up with a plan to maybe fix somethings this time in. I'll be put under for it, yay, and then hooked up with a morphine pump right afterwards in recovery so it is all in place when I go up to my room. Plus, I went for a check up with my onc yesterday my dietitian said that my liver may not react as dramatically this next time. Kinda makes sense I guess, I mean when I had my very first chemo treatment my body completely rejected it - duh - it's poison - so it makes sense my liver would react the same way. I'm just so ready, now that I know it's working, to get in there and have them zap it again. Bring it ON!!! I can't tell you how blessed I am to have these results. Many don't, and I know that. I remember when I received these similar results after my first check up after theresphere, and I've decided I'm not comparing this experience to that - I can't. What I can do differently this time, is believe my healing is possible, and give Him all the credit for it. That is what I'm working on now. Also, my blood work yesterday showed by white and red blood cells completely normal which is awesome, my tumor markers down, and my liver enzymes much improved from the last set of labs. Yay! And I ask them too "Is this normal normal or cancer patient normal?" They say its normal normal. Yay!

So, I had mentioned I'd been struggling with my new role of taking in my special needs niece. I have. But I think I have made a huge jump with this struggle this week that I feel I need to share here. My dear friend who has special needs daughters, introduced me to a place called YEI - Yavapai Exceptional Industries and it is, mind blowing. It is a facility that subcontracts with companies to do piece work, thus finding employment for these special needs individuals. They provide jobs for every need level, and gives them an opportunity to earn a wage, albeit small, an honest wage and take part in society. They work at their own pace, with their friends, have lunch together, take breaks, go bowling, to the Y and exercise, have Hawaiian shirt day, go to the movies - such great stuff - all together, with each other. These are the same people Brittany has met through her SNAP program, so she already knew a greater portion of the people there. She craves purpose, and it is awesome to suddenly be able to provide her with a peer group. I filled out a buttload of paperwork and it all went through I guess, and she started this past Wed. For now, she will go 2 times a week, and it just gives her such purpose. I can't tell you how cool this is, and had no idea such programs were available for the special needs individuals in our community. Fighting with DDD right now as I was denied that benefit too, but I have appealed that as well, and we will see where it ends up. That will help with rides and respit care and just general funding and assistance, so let's see if I can get that pushed through too. Oy! What is with me and government programs!! I can't get out of one for me, and can't get one in place for my special needs niece!!! Doesn't make any frickin sense to me at all. Good thing I don't take NO for an answer, no matter which direction it goes.

We are now getting ready for the Polar Express this weekend, just the 4 of us are going and we are excited. Good snow yesterday, so it's going to be adequately Christmassy - and we are excited to usher in the Christmas spirit this way. Super excited.

Thank you all for your prayers, they have been answered. I am so blessed. What a perfect Christmas gift, I couldn't ask for anything more. I do ask for continued prayers for continued healing as I head into this next quadrasphere. There very well may be another after this. (rule of 3 - how oddly appropriate for me eh?) And all I read, over and over, and I get something different every time I read it, is Proverbs 3, Psalm 91 and now I've added Daniel 3. I am just in awe of such trust. I humbly hope to replicate this trust every day of my life. What an awesome release.

God Bless -


Dina