Who's In Control Here - Really?

Today was just about like any other day. Sprinkled with subtle reminders of my breast cancer, but almost like any other day. I had signed us up for the kids summer movies at the Harkins in Prescott Valley - so Madeline and I went to the movies this morning to see Horton Hears a Who. Very sweet movie and so much fun to go w/ Madeline - a real mom and daughter day at the movies. I was not in the mood to wear a wig today, so my experience was 'sprinkled' with looks from people staring at me in my scarf, but, that's ok. To me, I was still one of the moms there with my kid to watch a movie, eat popcorn (even though I couldn't taste it) and sip my diet coke (thank you GOD I can still taste this!). We had a great time. We ran into one of her little friends from school - it was so cute to watch them hold hands and run into the theater. So sweet.

I am finding myself connecting with my kids in a deeper manner than before. I know this is because I am so tuned in to the way they see me. And I can't even say "the way they see me NOW" - because it's the way they've always seen me, it's the way I understand it NOW - crazy huh? It is such a remarkable feeling. My little Ginger is such a little mama's girl too - much more than Madeline was, and I think a part of me was a little afraid this would change when my looks began to change (again, society and what it has ingrained in me as acceptable human behavior). She still wants her mommy, and only her mommy and I love it. My kids fight over who mom is going to hold first, and I love it. I'll take this fight all day long. Tonight, Madeline asked if my hair had all fallen out yet as she peeked under my scarf. I said no and she asked me to take off my scarf, so I did. She looked at me and said "just leave it off mom, don't put the scarf back on". She is my little angel.

I do find however, my need for prayer becoming more consistent. My conversations with God are continuous throughout my day. (Sidenote - I have Singing In The Rain playing on the TV in the background right now, and it just fills my heart, I love this film) Anyway, my conversations w/ God are becoming very consistent, and very - well, pointed. I always thank God first, in every conversation I have with him, I thank him first for all I have, for my beautiful family and wonderful friends and so many blessings - and ask him to help those who don't have these things in their lives because I can't imagine going through life, much less breast cancer, without these people in my life. I can't even imagine. Then, I've just gotten a little dark in my conversations with him, and I don't know why. I truly feel in my heart that I will beat this - that this is the path I was supposed to walk down, and I will beat this. But then I find myself asking why again, and I really hate going to this place. Trying to pinpoint the moment I got cancer and this kind of thinking is just not helpful for me - I know this, but I can't help it. I know I need to be concentrating on God's love and healing. But I consistently battle with what I think I can control, and who is really in control. To be honest, as I type this, I think I did this BEFORE I had cancer too - about other things, about everything.

Then, I read my devotional for today, and here's what it says (a portion of a prayer):

I thank You, in faith, that You will make my way perfect, that You desire to do that for me. I confess I often try to make my own way or even think my way is more perfect. Forgive me for this. I praise You for Your cleansing and forgiveness through Jesus Christ.
Father, You are my sovereign Lord. I know that all things come through Your hands. You allow things in my life for a greater purpose than I often understand. I thank You for Your promise that You will work all things together for good. You are in the process of molding me and making me more Christlike. As I go through this process, I know You will get me to where I need to be. Thank you for making my way perfect.

Susan Sorenson


OK? Heeellllloooooo!!!! Wha? Could this be more appropriate???? So scary sometimes. I think I was headed in the right direction of always thanking first, I just need to keep thanking, thanking Him for getting me where I need to be and trusting Him to continue to do so. That's the hard word for me, trust - I'm such a frickin control freak - I can't help it. But, if I really think about it - I can't control this, only He can. As much as I think I can, I just can't. He is the little voice inside me that is always right, always saying the right things, always warning me when something is wrong. He is the source of my strength, therefore, He is the one I must trust.

This seems to be a work in progress for me - which I hope doesn't count against me - cuz I'm getting better at it!

My Wig? Gone With The Wind.

No, that didn't actually happen to me. Wouldn't that have been the best though? But I did finally go out in public with my wig on. I went to the WigWam (can we get more stereotypical of a wig shop in Prescott?) and my new good friend Mary Jo styled this cheap wig I bought that I thought I could maybe use to just run to the store or something. The other wig I bought is more, well, just MORE. Anyhoo, it didn't turn out that bad! It actually looked pretty decent. It's the kind of wig that will make me just blend into the common public, which is a really nice option. However, when it's windy, since it's not your hair attached to your head, you don't know when it's standing straight up - so it's important to check yourself a couple times. The things I am learning. I went to Michael's with this on, and didn't feel stared at or anything. I wore the MORE wig to church this morning and someone asked me if I got my hair highlighted. Guess it looks pretty natural. This was nice, however, this was also said by the woman who watches Ginger and she knows I have breast cancer and saw me with the super short hair cut last week, so while I'm flattered that she thought I had my hair highlighted, I'm also concerned with the fact that the woman who watches my toddler doesn't remember me from last week. Hmmm. Anyway, my friend Jennifer brought up a fabulous point -she said "Dina, this way when you don't want people to talk to you about your cancer when you're out, wear a wig - when you feel like chatting about it, wear your scarf." Brilliant! However, I'm finding these wigs slightly uncomfortable. So there will most likely be days where I will just not want to wear one out. I couldn't rip that wig off fast enough when we returned home from church. I've advised my family that I will be 'free balding' it here at home.

Now here's the lesson this weekend for me. My 3 year old has taught me more about humanity than anyone else through this experience. She has seen me with long hair, short hair, with basically no hair, in 2 different wigs, and has said NOTHING. She literally doesn't see my hair - I can't tell you how this makes me feel and how it feels to experience someone treating you as a PERSON, by who you are, not what you look like. I know this seems like a simple concept - but read my sentence again and really read it. I am painfully aware now of how I see people. I see the packaging first, not the person inside. I am trying now to see past the packaging - it is indeed, so irrelevant. This my friend, is life changing kind of shit. Amazing. Today at lunch she said 'mommy, the medicine you are taking is going to make your hair fall out, right?' I answered "yes, it is. but when I'm done I get to grow nice new hair - that will be cool, right" and she said "yes, can it be pink? pink is my favorite color!" I told her I'd work on that. ;-)


As silly as this sounds, as many times we've all heard this life lesson throughout our lives, in high school and all that stuff - I have actually been given the gift of being able to experience this - this profound love of a child which sees only people - nothing else. Can you imagine? I know! I can't either!!! Isn't that a shame? I'm really going to work on this. I think this is one of the most important messages I've received through this. I feel like there are no words in the English language to describe this feeling. I hope I'm doing it justice with the words I have chosen here.


Here are some pics of the wigs, and I dunno, I think PJ looks dead sexy in these, way better than me. We had quite a few giggles about this - sometimes we are all just great big children ourselves, aren't we? We can only hope. God Bless.

Do You Need Help With That?

Well, it has started. I went out in public for the first time today, with my little scarf on, and it's pretty clear now, to all that see me, that I am sick. I didn't realize how good I had it before. I almost wish I had kept my hair just a little longer. I didn't even think about this part.

I went to Walmart today to pick up a couple things, and I was treated so much differently, it was funny actually. Well, first of all, it's Walmart - another frickin universe unto itself. In general we must prepare ourselves to enter it's doors - but now, I must prepare even more. I get a lot more smiles I must admit, which was nice. Except from some of the younger, teenager types - they were the ones, at least today, who stared. Oddly enough, this did not bother me. Everyone else seemed to smile. Smile with just a hint of pity. I went to the sewing area to pick out some material - a friend of mine gave me some of her little scarves when she went through chemo and I really love them. They are the most comfortable of everything I've acquired - so I thought I would pick out some more fun material and see if she can make me some more. (Scooby Doo was one I picked out - Madeline will LOVE this, especially if I got enough material to make her one too! I hope I did) ANYWAY - I had one woman ask me outright if I had breast cancer, and I answered yes. She had a very sweet face. The woman helping me said "Well, attitude is everything - you've got a good one!" Whew! Glad to know this! Then I had to go pick up something from Site to Store shipping, and I had to show ID to pick it up. I whipped out my drivers license and it really just took me by surprise, I looked at it and blurted out "Wow - that's me with hair!" The woman was clearly taken aback by this, I felt horrible for making her feel so uncomfortable. I just had forgotten what that picture looked like - it's not like I ponder over my drivers license for hours on end. She must have asked me 5 times if I needed help out with my package. Then the cashier just started putting all my bags into my cart for me. No one has ever done this. So I think this is just the beginning. I'm so very curious at how people will treat me differently.

Had a lovely playdate today, Sarah, my new friend brought over yummy lunch and her beautiful little girls and we had a lovely time. I'm so blessed not only with the wonderful friends I have made, but all the new friends I am making through this process. I just wonder if the 'newness' of my cancer will wear off, and I will find myself talking about things other than my cancer eventually - OR - maybe my cancer is the new conversation to have? Hmmmmm. It doesn't bother me to talk about it, in fact, it's quite helpful to me. I'd much rather have people ask me a ton of questions than just sit and awkwardly talk about the weather or something stupid like that. (unless the weather is particularly noteworthy, which in this case, AZ - it is not usually) I just feel kinda selfish sometimes, like it's ALL I'm talking about. I don't know, I guess it'll figure itself out.

Then, another awesome MOPS mom, Amy, made us a yummy chicken enchilada dinner. Again, I can't tell you how much these meals help us. It has always been so important to me to sit down as a family and have meals together. And this treatment regime makes me so tired, it is such a life saver to not have to worry about preparing these meals. Again, how very blessed we are. Thank you all.

I can tell I haven't had treatment this week. I almost feel like normal Dina today (well, normal but balding) which was really nice. Next treatment is going to be a bitch though - not only am I starting a new drug (a 90 minute drip) they also had to schedule me for another echo cardiogram because I 'm going off the Sutent for the study. So after treatment (Benedryl, steroid, Taxol, Avastin) then we stop in Cottonwood for the echo - ARG. I told PJ to just turn and point me in the direction I need to go on Wed. I'll be a zombie by the time I get home.

We have home projects planned for the weekend, so I can REALLY feel normal. I'm going to get my wig styled tomorrow morning, so that should be exciting. And, hopefully pick up my Captain Stubbing. (this was the balding Captain of The Love Boat - for all you young people who don't know what I"m referring to - I had to explain this recently, so I thought I'd clarify) I know, you're jealous!

Love to all -

I Look Like a Lesbian Buzzard. Not that there's anything wrong with that!

Seriously. And when I put on make-up, I look like Victor Victoria. After the reveal. (not quite as glamorous as Julie Andrews but you get the picture).

Let me apologize real quick for not posting last night, I was writing a sketch for a friend of mine and finished late, got tired and went to bed. My mother told me this afternoon she was worried when she didn't see a post, I don't want to worry anyone. My apologies.

Anyway, back to my buzzard hair cut, this is just really hard to get used to is all. I pass by a mirror and I expect to see what I've always seen, and I don't. It reminds me of the story Keiffer Sutherland told - he said that when he went to the screening of The Lost Boys and was mortified by his performance. He said that he felt that film, although his breakout film, was one of his best, until he watched himself. He said that the work he did FELT right, but LOOKED wrong. So he decided then that he would never watch himself again, and even took all the mirrors out of his house. I feel great, but then see myself, and then not so great. So maybe, I'll put my makeup on, make sure my scarf isn't on backwards, then just be on my way. Not look in the mirror anymore. Just base my mood off how I feel, rather than how I look. Hmmmm. Quite a concept. Oh, then this happens - I was so worried what Madeline would say when she woke up and saw me with my shaved head. And you know what? She didn't say anything - not a word. She just hugged me. All she sees is her mommy. Wow - what she has to teach me. What she has to teach all of us, the feeling of her just hugging me like it was any other morning, giving me kisses and telling me she loved me - it is a feeling I cannot describe. She saw only me. To be able to experience something like this is amazing. Later that evening, while we were having dinner, she finally looked at me, then looked at PJ, looked at me again and said "Hey - you guys match!" Hilarious. Ginger, she really just likes to look at my scarves I wear. She thinks those are pretty neat. I need to figure out how to wear these scarves without feeling claustrophobic - I've never really been a 'hat' person - guess I better suck it up, eh? I'm certainly not ready to go commando either.

I've felt real good the past 2 days, it's been nice. Which is good too because I've been able to really digest this hair thing on its own - all by itself without experiencing any other side effects. But, that last treatment (the 3rd in the cycle) really kicked my ass. I was down from Friday through Monday - it was pretty horrible. So - now I know. Well, sort of - I start a new drug next week - hopefully I won't have any reactions and I won't feel any real difference. We can hope. Right?

I had a playdate yesterday, a playdate today, and another one tomorrow. I almost feel like a normal mommy. I really love being Madeline and Ginger's mommy. It is the best job in the world. I am so very blessed for my family, my children, my dear friends, my life. I want to end with another installment from my daily devotional, because it is so appropriate to what has happened the past couple of days, it's really freaky. Now that my head is shaved, it just invites the conversation of me having breast cancer. People randomly just approach me anyway, now, there's a whole slew approaching me. Everyone has their advice, everyone has their remedy - and this is what my devotional said today:

"I remember when my oncologist told me I had about a 50-50 chance of surviving colon cancer. I desperately wanted some kind of guarantee that I would be OK. But that was impossible. Plenty of people offered me other 'guarantees':

Eat natural foods, they will cure you
Drink a certain tea, that will cure you
Take certain vitamin supplements, they will cure you.

But I am at heart a skeptical former newspaper reported. I knew there was no way all these methods could deliver what they were promising. I wanted to believe that one of these really was the answer, but which one was it? What if I picked the wrong one? And then I remembered: 'Some trust in chariots (food and drink) and some in horses (vitamins and herbs), but we trust in the name of the Lord our God' (Psalm 20:7)
It wasn't which had an ironclad guarantee; it was Who. My diagnosis, my treatment, my prognosis.....and my future were in His hands. I has His guaranteed promise that when I put my hope in Him, I would not be disappointed."

Lynn Eib
Author

So I move onto the next phase, learning to base my life off 'feeling' more than 'looking', trusting Him, and praying for the strength to do just that.

Dina Goes all GI Jane on ya'll -

Yes, PJ shaved my head tonight. I know, I just had my hair cut this past weekend, but I took a shower this evening w/ Madeline (we do that sometimes) and my hair was really falling out all over the place making such a mess - and anyone who knows me knows - I don't do 'mess'. It was time. Everyone said I would know when it was time, and in the shower, I knew. So we ate dinner, put the kids to bed, PJ went to the store to pick me up more crap for my aching mouth sores bless his heart, and then I sat in the middle of the kitchen and he shaved my head. I didn't go to the skin, I couldn't do that for some reason, more like GI Jane. Now, I'll just let it fall out unless it starts itching me horribly, we'll see. And then yes, my sweet husband shaved his head as well. I have the best husband in the whole world.

I cried a lot today. Please don't think I do this in front of my kids, I have on occasion, but for the most part - I save these times for private. My kids are aware that I cry, which I think is important, but they mostly know me as happy Mommy and I'd like to try to keep it that way. Today was just one of those rough days. I don't feel well, and that is so frustrating to me. I don't like not feeling good - I have too much to do. And these mouth sores are so very uncomfortable. I go in for blood work tomorrow and will be asking my Dr for some remedies to recommend because at this point I'll try anything.

The other thing that occurred yesterday, which is really important that I forgot to mention earlier was the clinical trial drug I was on has been discontinued. My dr called me yesterday to tell me to stop taking the Sutent (oral drug I took daily) immediately as they have stopped this trial drug because the results from the Avastin were more effective that the Sutent. Sooooo, I will receive Avastin along with the Taxol at my next treatment (next Wed). Now, Avastin is intravenous like the Taxol is - so this means my treatments will now last a little longer than they did before. (they give these drugs one at a time, not all at once) In the end I'm relieved with this, I mean, I want the best drugs to kill this stuff, and if they found what I was on wasn't doing as well as the other drug - then by God give me the other drug, right? BUT - the other patient of my dr's who was on the Sutent is in complete remission, so I am a little conflicted on this. I just need to know that this all happened for a reason during MY treatment, and the powers that be put all this in order to make sure I was on the right medication. I need to just hold onto that, and keep powering through. I am a creature of habit, and was sort of in a routine, now the routine has changed, so I get shaken by this a bit - it's just who I am.

Tomorrow will be a better day, I think I might be a little blue this week because I'm not getting any sort of treatment, which may make people say wha? you should be thrilled with your week off - but, a week off means I'm not fighting this thing and that depresses me. I just need to learn to look at my week off as my body's chance to rest and get ready for round 2 of treatment. And boy do I need to rest. That last treatment kicked my ass.

I wanted to share something oddly ironic I rec'd in the mail today. I rec'd my renewal Actors Equity Association card in the mail today - which is not odd because I renew this every six months or so, I don't recall. What was odd that this time, unlike any other time (I've been union for 10 years now) this time it included a letter. They NEVER include any thing of this sort, and I wanted to share with you a portion of this letter:

"It has been said that an Actor must have the hide of a rhinocerous, the courage and audacity of a lion, and most importantly, the fragile vulnerability of an egg. It also has been said, and I'm not sure by whom, that the moment of not knowing is the moment that has the greatest potential for creativity. The professional and private lives of most Actors are filled to the brim with moments of not knowing. Actors are suvivors and will continue to strive because they have the need to celebrate, in performance, that sacred communion between Actor and audience."

Robert Prosky
1930-2008

On that note, here is a pic of me and my hubby - with matching hair do's. God Bless.

dina

Compassion - The Spice of Life

So yesterday was a pretty good day, started out a little rough, I was a little down in the dumps, but ended on a pretty good note. Played outside in the morning with the girls, it was simply beautiful outside. Wore out Ginger (thank you God) she has such a different energy than Madeline had at this age. They both are fearless, but Ginger is way more 'brut' like than Madeline was. She's very stubborn (wonder where she gets that from) and just plows through everything to get what she wants. Needless to say, I have to watch her very closely. Then Jennifer came and picked me up and we went to the 'Look Good Feel Better' class out at the cancer center in Sedona. It was fun. They gave each of us a buttload of make-up which was really awesome, then showed us how to put it on. Most importantly, they showed you how to put on your eyebrows (find your eyebrows really) when and if your should fall out during treatment. It was pretty cool. I must say though, it was the first time I've sat around a table with a bunch of other women cancer patients, and that was tough. It was tough to look around at their faces, and notice we all had the same sort of expression inside us. Tough and comforting at the same time.

My friend Peggy, who I had met at my past treatment was there too. I was so excited to see her. She was having a particularly bad day yesterday, and I could tell, just wanted to talk to other women about it. I hugged her, and when she didn't let go right away, I knew she was crying. Then I cried - I wanted so bad to take her pain and hurt away from her. It hurt to see her so upset. I told her that she needed to call our Dr if she was having some mood symptoms that she couldn't handle - that is was OK for her to ask for some drugs to help her cope, she said thank you. I'm so glad I got to hug her, she is such a special person even though this is only the second time I've seen her. It was nice to just spend some girl time w/ Jennifer too. We continue to deepen our friendship which is so very special to me. She has been that friend that just knows when to call me - knows the right thing to say to me - just so comforting. I'm so blessed to have her in my life. She has been such a source of strength for me, and one who reminds me it's OK to be angry, sad, frustrated. Sometimes just having another female acknowledge your feelings is all you need to move away from that feeling. Does that make sense? Jennifer does that for me - she validates me. Kinda gives me the seal of approval so when I get stuck in a particular weird feeling, I can let it go and move on to the next one.

Physically, I'm really having rough time with this this week. Frustrating more than anything. My mouth sores are really uncomfortable. I am picking up some mouthwash that is supposed to help today, so we'll see. And I'm just tired. I was hoping to get to the gym, and I still may try tonight if I feel better, but I feel like I ran a marathon - physically strained even though I haven't done anything - it's the weirdest thing. I'm a night owl but lately I can't keep my eyes open past 10. I literally feel asleep writing thank you notes out last night - while I was writing! I hope what I wrote makes sense - so if you get one and read it and go 'what the h(*)( is she saying here?' you'll know why. Thank you! - that's what I meant to say.

Hopefully I will have found a cleaning lady today - I'm meeting her and seeing what she's all about here this morning. She's real reasonable, so I'm hoping we click. You gotta be a little picky about who sees your dirty underwear, ya know? Cleaning people are a special breed altogether - I have the utmost respect for them. I know many friends have offered to clean my house, which I appreciate, but, I don't feel real comfortable with any of my friends knowing my toilet that intimately. Sorry.

We'll see how it goes - much love to all till tomorrow. Keep the prayers coming, they work.

My Fight To Be - Unremarkable.

I've just been so tired lately, I can't get it together at night. I was asleep on the couch at 10pm last night, PJ had to wake me up and put me to bed. Now, the coffee cannot brew fast enough - I like getting up early before everyone else and listen to the birds outside and blog - maybe this is my new routine?

Church was awesome, as always yesterday. The message was about God's work in our lives, in like, The Butterfly Effect kind of way. How something so small, can effect our lives in HUGE ways. I had many of these running through my mind. PJ and I were talking about it on the way home, and he really came up with the big one. My decision, way back in 2002 - to spend Thanksgiving with my father in Dewey. Prior to that, I had NEVER spent a holiday with my father, or intentionally made plans to do so - and that was the year PJ decided to go with his friend (Brian, my step brother) to Dewey as well to spend Thanksgiving. If we hadn't made those small little decisions, we wouldn't be where we are today - and look at all the things that have come to be simply because of us spending that holiday together - incredible. I can't imagine my life without PJ - our girls, our love, our home our everything. And, I coudln't imagine going through this w/o him - I certainly would not be able to be at strong as I am - PJ is such a source of strength for me - he has always been my best friend, but this experience, if it is even possible, has made us even better friends. I am so very blessed.

My hair is continuing to come out in my hands, I literally run my fingers through it and a small handful comes out. I showed PJ finally last night what it was like - he was mystified. I guess, we both decided, that this at least means the chemo is working - doing what it is supposed to be doing. It's so vain of me to be so wierded out by this, but I am. Funny, I flop back and forth between not caring to obsessing about it. I guess that's normal. Don't know, never have dealt with this before. And, also, they said I would get these mouth sores, and well, they have started full force. This makes eating not so pleasant either, as you can imagine. They are really like kanker (sp? cuz w/ a 'c' would be cancer - ironic?) sores in my mouth - uncomfortable and I feel the need to drink something all the time. Guess it's time to call the pharmacist for the 'miralcle mouthwash' they can concoct for cancer patients - just really didn't want to do another 'cancer patient' thing, I hate calling myself that. Arg.

So- the reason for the title of this mornings blog, is something I've been meaning to talk about for awhile. Way back when I had the mamogram that ended up diagnosing my breast cancer, I was struck with some of the wording used in the report. The report went on and on, paragraph after paragraph, about my right breast, the mass, the size, the 'highly suspicious' of 'malignancy', the other 'lesion areas', and so on and so on. Then, at the very end, it simply said of my left breast the following:

'The left breast is unremarkable.'

Unremarkable. Hmmpf. Now isn't that ironic? Throughout this life, we strive to make ourselves known by trying desperately to find our places in this big world, to make a difference, to be all the things that our family, friends and loved ones need us to be. Then finally trying to figure out who we are - yet, all I am really left with now, all I really need to be - is unremarkable. I find myself oddly content and satisfied with this word. It is now my new favorite word. All I need to be in this life, is Dina - wife to PJ, mommy to Madeline and Ginger. Trust me, I was an actor for a long time, and put a lot of pressure on myself to 'make it big!' and ya know, I already have. And, fortunately, I didn't need to have cancer to figure this out - I had figured it out beforehand, but cancer certainly clarified and fine tuned it for me. This life, this life of beautiful family, caring friends, such good friends, and wondrous community - is all anyone could ask for in this life. Really unremarkable, thank God. I'd like more of that please, to go.