About Me

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I have breast cancer and am a snappy dancer

Saturday, May 30, 2009

It's Rosemary's Baby!!

Well, not exactly. But I do look an awful lot like Mia Farrow now. I went ahead and got my hair chopped off as my shower this morning produced handfuls of hair. Unsettling to say the least, so this is the last step from shaving my head. I figure this way it gives us all, including my girls most importantly, a chance to get used to this almost no hair look. It's not that bad. Oddly enough, I really don't care. I feel like I have so many other things on my mind right now, this is just the last thing on earth I want to be bothered with, isn't that ironic. I kinda feel like I look like I have cancer now. And that makes me sad. And old, I feel like I look old. I feel old lately, mostly because I haven't felt good at all for 2 days straight now. I still have this awful taste in my mouth and nothing tastes the way it is supposed to - not even water which sucks. So I can't even feel like I can wash this out of my mouth, if that makes any sense. We went and had Mexican food tonight because I thought maybe if I had something really super spicy, then I would be ale to taste it. Bad idea - why? Because I couldn't taste it, and now I have horrible heartburn. No winning here on this food front issue. Arg.

Madeline said to me when I got home "mommy, your hair looks lovely". How sweet is that? I included a pic that PJ took while we were sleeping, she is such an angel. And of course, I had to include one of the cutest pics of Ginger - she is such a little crazy girl, so cute. I have to brag, can't help it.

I hope this intensity of the side effects is just this one time at the end of my cycle, and not for the rest. I mean, of course, I'll deal with it if I have to, I think I was just kinda spoiled early on with the rash and all (what did I know?). Sometimes when I think this could go on for another 11 months I feel like throwing up - not giving up, just throwing up. I'm so mad sometimes that i have to do this - when all I really want to do is go camping or plan a trip to Disneyland or plan a trip back East sometime, and I know, I can still do all these things, just not now. I WILL do all these things, just not now. (actually we are going camping on my off week in July so THERE you stupid cancer!) It's just frustrating. I look at everyone else and think - they don't have cancer, they don't have cancer, they don't have cancer - but I do. Again the silly pity party. I can do this, I'm just not real happy about it all the time, is that normal? I'm looking forward to this week of just going in for labs and that's it - I wonder how good I am going to feel - and I wonder if this taste bud thing is a permanent thing now or what. Yukko is all I can say about this. OH - and I am also going to the Look Good Feel Better class in Sedona - where they teach you how to apply makeup and make turban's out of t-shirts and stuff - should be fun.

PJ and I watched a funny movie last night, which we are trying to do more and more these days. Burn After Reading is pretty damn funny - if you are Cohen brothers fans like we are. I highly recommend it.

So here are the pics I talked about - enjoy - and know if you run into me on the street and mistakenly call me Mia, I'll forgive you. ;-)



Everything Tastes Like, well, Ass.

Boy is that the truth. I think this is the worst side effect yet, oddly enough. Sorry for not writing last night, not only was I exhausted all day yesterday, but I was also having a small pity party in my own honor, and neglected to invite everyone else. It was kinda a private thing, you understand. It didn't turn out to be as much fun as I had thought, so don't worry, you didn't miss anything. ;-)

This food tasting bad thing is a real bummer. I didn't realize how much I enjoyed food until now. I really hadn't given it a thought, but wow, this sucks. Although, thank you to Rhonda for dinner last night, I could actually taste that and it tasted very yummy and considering I was a walking zombie all day yesterday, it was so lovely to not have to cook for my family and we still had an awesome meal, so again thank you.

So my children continue to be such an awesome source of inspiration for me. When I have these down moments, my children always seem to do something to remind me of what's important and pull me right out of the down moment I am experiencing. Last night I started crying while I was feeding Ginger her evenign bottle, just upset at what's happening, upset that it's even happening at all - and frustrated we aren't out doing 'normal' family stuff on a Friday night. When Ginger pulls the bottle away from her mouth, turns to look at me, then blows me a kiss. Perfection. I smile and hug and kiss her. My girls are my source of inspriration, as stereotypical as that sounds. It is so very true. What a tremendous gift from God.

So - today, we are working on stuff around the house, which will feel normal. And, I've decided to make a hair appt to chop the hair off the rest of the way. Now that today is here, I almost backed out - but now, I figure it's just one last thing I will have to deal with if I go ahead and do this now, plus, the whole 'I control this thing, the cancer does NOT'. That's kinda important too.

Wish me luck today, I'll post some pics when it's all said and done. Mucho love to all and thanks to those of you who continue to pray for me and my family. It's working. Keep em comin!

Thursday, May 28, 2009

Chemo Brain

Got a bad case of the above tonight, so I need to keep this short. Considering they loaded me up with Aredia (this is the drug I take once a month to put the calcium back into my bones the cancer is sucking out) then Benedryl, then Dexatrol (the steriod), then Taxol (chemo), then Neulasta (shot) - I'm a bit feverish tonight, have the most horrible taste in my mouth and everything I eat tastes awful. Other than that, I'm doing great! (note the sarcasm here if you please)

My husband has put me in the bedroom with the bed turned down and told me to blog twice tomorrow and go to bed tonight. I'm obvoiously not listening to him, cuz I have a computer in the bedroom too. (sneaky, eh?)

I don't have the joint or bone pain yet, and hopefully, won't get that - we'll see tomorrow. It's true - I've felt completely differently each treatment. This taste thing is really the worst I think - because you go to eat something you normally love, and it doesn't taste anything like you remember it tasting - it tastes really awful. I was just learning to deal with not getting hungry anymore, now when I do eat something, it tastes like shit. This baby weight is gonna fly off of me, I tell you what, one way or another.

Other than this evening, had a good day. Busy day, but good. I'm tired. It was Madeline's last day of school today, and she got to wear her jammies to school as they were having movie day. She looked so cute. Unfortunately I didn't get to pick her up and say goodbye to the parents and teacher for the summer - damned Dr. appt to check my port placement ran late. So that was a bummer to miss. Hopefully, I won't miss too many more of those moments, that's why I'm missing them now.

I'm literally falling asleep and it's not even 10pm - that's a first. I must bid you all a fair goodnight. We will see what tomorrow brings, nothing I can't handle I'm sure.

God Bless -

Wednesday, May 27, 2009

Deep Thoughts - From Dina and PJ

Ya know, if you look hard enough, you can find humor anywhere. I think I do this quite often, but my husband and I were on a roll today. First off let me say my treatment went real well today - however, it was really long and I've got 5 different drugs running through me right now and am getting very sleepy. We got there at 10:30am for lab work, didn't start treatment until 1:30 and finished at 5pm - home at 6pm. Long day. We were in the room right next to the guy who mixes the chemo medications. We thought he should have a martini shaker he should just shake occassionally, to see how people react.

So, each time I go from treatment, I have my lab work done first so they can check all my levels. My white blood count was a little low this time, but since I was coming up on a break, they were fine to give me my treatment but gave me a shot to help boost my white blood cell count. This shot causes fatigue and bone pain. Bone pain is in the sternum, the legs and the forehead. These are the largest areas that produce white blood cells - who knew? Hmmpf! Then after my lab work I go and see the doctor. She talks to me about how I'm feeling, answers my questions and then does a physical exam. Checks my breasts and does a lot of tapping on me. She said I'm doing really great - those were her exact words, so I'm quite hopeful. When she taps on my belly, she says she can't feel my liver, so that is good. I had no idea you could feel anyone's liver from the outside - by tapping or otherwie - see, my learning continues to grow with this process. I have, I admit, taken a couple taps to my belly on my own to see what I can feel or hear - I have to say, no liver for me either. Hmmpf.

It took awhile this morning for her to come in, so, PJ and I being the bored little children start playing with the equipment - he looks in my nose with the little nose light, looks in my eyes with the little eye light - your basic juevenille behavior. Then we decide that a zerbert should really be part of all cancer related physical exams. If you don't know what that is, it's when you blow a big fart sound on someones belly - it's hysterical. Could you imagine a doctor being all serious in examining you then at the end, laying you down and blowing a big zerbert on your belly - then reacting all serious afterwards and writing in your chart? We think this should be required.

When she examined my right breast, I now notice the excisional biopsy I had done is finally pretty much all healed. This was basically a lumpectomy I had done, and my boob, although smaler now to match the other, is a bit, well, deformed now. My top (I don't say the N word for the top of your boob, remember?) kinda leans to the right now. Which I notice, then think back to when I was nursing and thought 'I wish it was like this then - it would have made nursing a whole lot easier cuz this was my bad side (how ironic) and what great aim I would have had to squirt unsuspecting people, then look up with a confused look on my face like it was raining or something.' I know - my mind is a bit twisted.

I wanted to share something from my wonderful little book 'Praying Through Cancer' again, cuz todays devotional was just amazing. Here was a bit of todays:

"Shortly after I was diagnosed with non-Hodgkin's lymphoma, I received an email from my namesake niece, Susanne. She was a medical student at the time and is now a surgeon. Her message simply said "Aunt Sue, I want the Big 'C' (Christ that is) to conquer the 'little c' (cancer)." Instantly I responded with "Susanne, where did you find that? It's awesome!." She replied "I don't know. It just came to me." I wrote back "Susanne, I will never refer to cancer as the Big C again".

Lord, help me focus on You as my 'Big C', ready to crush and triumph over the 'little c' that I am coping with now. Above all, I deeply desire that You are praised in this experience. If I can be assured of this, all that is happening is worthwhile for my growth and for Your glory."


Isn't that amazing! It was awesome to go into treatment with this fresh in my mind. Then, I got my husband to pray with me before they started the Taxol (chemo) drip today - that was pretty amazing too. I met a lovely woman named Peggy today - the chemo cubes were pretty full, so she and I shared one and she was just delightful. We talked about our cancer, she looked at the pictures of my girls and cried with me - and we talked about God. She told me her stories of how lovely her friends were through this experience, and which friends she had to say "See Ya" to. We both discovered what a gift this cancer has been to us, after the initial shock that is. Not many get a chance to look at life in this manner, and deepen their relationship with Him. She was absolutely lovely. I would have taken a pic of us together, but she, like me, is having trouble with losing her hair and I thought it would make her uncomfortable for me to ask, so I didn't.

My baked goods went over very well - everyone always seems so shocked when I do things like this. First off - I LOVE baking for people - plus, I figure, you gotta take care of the people who are taking care of you, right? I'm going to try to do this after I complete each cycle. A celebratory bake night event if you will - plus, they load me full of steriods the night before, I gotta tap into that extra energy, ya know?

We also met another couple towards the end of my treatment today, they were our age, and she was newly diagnosed. They were lovely too. What beautiful people I am getting to meet because of this. And unfortnately, seeing lots of younger women too.

To close, I think I've decided to go to phase II on the haircut front and go to the pixie cut now. It will be easier for it to fall out this way - plus, I have a LOT of hair. So, that's next on the agenda. Baby steps, baby steps.

Thank you to Nancy for watching my girls all day today, for Karen for taking Madeline for the morning and lunch then bringing her home, and to Sarah for making such a yummy dinner. You have no idea how much this helps us - I can't even describe. And thank you all for your support, it continues to flow into us and bless us, and is making this journey for me a journey of love - not a journey of pain. My love to all of you.

Now, go give someone you love a zerbert - it'll make you laugh.;-)

Tuesday, May 26, 2009

Ahhhhh, Tylenol PM -

I'm going to have to keep this a bit short tonight - due to the title above. See, I have to take 5 steriod pills the evening before treatement to help counteract the reaction, which keeps me awake - so I get to take Tylenol PM to help me sleep, and it works. Yea! They offered me heavier stuff, which is fun sometimes, but it really just ends up making you horribly constipated - and this is, well, that is just poopy. (actually not really) It's just not very much fun.

Good day today - kinda boring, kida felt blah today. Then realized I was starting my period, which I was told I probably wouldn't have due to treatment, but much to my surprise, this proved to be incorrect. At least for this month.

I went and worked out this evening too - something I haven't done in a long time. It felt good to sweat and focus on being healthy for a while. Nice. I think these gym times for me will be very personal, focused on healing times for me. I'm very excited to keep moving forward into a rountine - it was nice.

I made apply butter croissants for my nursing staff tomorrow. Oh - and cheese criossants too. I hope they like them. PJ and I sampled both and they tasted de-lish. So it will be nice to give them some appreciation for taking such good care of me.

I'm getting really sleepy - so before I start slurring my words, I'm going to bed. Thanks to Judy for the awesome U2 cd she made for me - it will make our ride out to Sedona awesome. Night Night -

Monday, May 25, 2009

Time for my Captain Stubing.

Happy Memorial Day to all. I hope you spent your day enjoying your family or each other or both and took the time to thank those who gave their lives and continue to lay their lives on the line for us to have all these wonderful freedoms we enjoy. God Bless America. (especially now considering this whole N Korea thing, wha???)

Anyway - today was lovely up here in Northern Arizona. Absolutely beautiful. My husband took Madeline to her first summer movie - dad and daughter movie time, which was precious. My friend Judy and her kids + 1 came over afterwards and our lawn was filled with kids in swimming suits running through sprinklers - which reminds me of the line a wonderful comic I knew way back when named Becky Pedigo said "when there's girls and there's grass, there's gonna be a cartwheel". Ain't that the truth? I tried to do a cartwheel a little while back - it was the biggest mistake ever. As a warning to those who think 'I know how to do that, that's easy! I used to do them all the time!' - please know this - unless you work out a LOT and it's been less than 3 years since you did one - don't. I felt like my arms were going to snap in half - ladies and the whole upper body strength thing - NOT A GOOD IDEA.

This evening we had grilled kilbasa which was delish - and it all just felt like a normal, family holiday. Then when I went in to shower this evening, my hand pulled up a palm full of hair while washing it. My heart just sank. I think, in my infinite denial, I was quietly hoping I would be the one that wouldn't lose my hair. But I bet everyone thinks that. The funny thing is, is my hair has kinda hurt the past few days - the feeling when you pull out a ponytail that has been in all day, or if you've worn a hat all day - that's the feeling I've been having. Now this. I knew this was coming, I just didn't know how it would feel. I just want to make sure my girls are OK with this - I want to make sure I don't scare them. I hope I don't.

I think I've decided to get through this week (Madeline's last day of school) and then I'll have PJ shave my head next weekend. I don't think I want to taint Madeline's last day of school with my being bald and trying to deal with that. Plus, I'd like my privacy about it too I suppose. I'm nervous, scared - and then feel guilty about feeling these things because in the big scheme of things this is really not important. My life is important, it's just hair - who cares? I care - it matters to me as a woman, it just does. I can't help it. I was telling Jennifer this evening that to be honest, I wasn't reallly fond of my hair at this time anyway, but it's mine - and it's something else this stupid disease is robbing me of. Then I just get pissed. I've felt like I've made such huge strides in the right direction, then this happens and I feel like I take 10 huge steps back. And I cry - and cry - and cry. And my husband holds me and tells me how beautiful I am and nothing will change that, and I am so sorry he has to do this with me. He tells me my girls love their mommy and it doesn't matter what I look like - all they know is loving me. I love him so much. I'm so very thankful that he is here in my life. God knew what he was doing when he put us in each others pathways years ago - boy did he get it right for me.

So I guess tomorrow I'll go see Mary Jo at the Wigwam and pick up my Captain Stubing. Didn't think I'd really need it - but sometimes being the Queen of Denial comes with it's moments of clarity. ;-)

Sunday, May 24, 2009

The Wounded Healer

I usually type at the kitchen table each evening, but tonight I've had to move over to the couch with my feet up. My legs are having some circulation problems today, with strange charlie horse type pains in the back of my knees. Now, this is either the chemo, or the fact that I haven't exercised in forever. Hmmmmm....

This mornings church service was simply amazing. I'm going to give you the link to listen because I think everyone can spare a measly 20 minutes out of their days to take a listen to this theory of people, and how we need each other. We Methodists aren't too preachy, so those of you non-church going people need not worry - everyone would definitely get such a beautiful understanding of humanity - and it certainly spoke to me in light of what is happening in my life. That being said, let me say that I have always felt that I was supposed to do something important in this life. I have always felt I had a unique insight into people and have the ability to literally feel what others feel. This, I have now learned (thank you Jesus), is called compassion. My life has been very blessed with many things - I was the youngest of 3 girls and mostly learned from the mistakes of my sisters before me - but surely made my own mistakes along the way. I was involved in acting early on, continued out of high school to perform in many wonderful productions around the Phx area where not only did I hone my craft, but I met some of the most wonderfully dear friends I still have to this day. Moved to NYC with stars in my eyes only to realize I didn't want to live on Top Ramen the rest of my life, so made my day job a career and by the end of my 10 year stint in NYC, performed in the NY Comedy Club, wrote, directed and performed 2 2 woman shows in the village, and had finally obtained the six figure income VP title and an office with a view in the financial district working for the most amazing insurance woman on this planet. I was married to my best friend and we had the most amazing little girl, and all I wanted to do was come home. So that's what we did. We came home to AZ - and I became a stay at home mom, got pregnant with our second child and we learned to 'live within our means' - something I was NOT used to. The first years here in AZ were, what I thought at the time, the toughest I have ever experienced. PJ and I were never the type to argue, about anything really - and suddenly we were arguing, a lot. We worked through it, because thank God, we are best friends first - how blessed am I. The reason I am explaining all of this? Through all of this, I have had some profound personal experiences - with people. Something my first roommate in NY told me once, she said "Dina - you think everyone thinks the way that you do - they don't. You think everyone cares as much as you do - they just don't". I remember this like it was yesterday, and I was floored. I never considered the fact that people didn't care about one another the way that I care about people. It just never crossed my mind! I truly feel I have succeeded in the things I set out to do because I bring this sense of humanity to everything I do. It is with this sense, I know I am supposed to have this disease and I am supposed to talk about it. Talk about how it feels, talk about how much it pisses me off, talk about how very sad I am at times when I think my time here is limited, then how powerful I feel when I know that God is on my side helping me fight this thing, talk about the joy in Madeline's smile, the spunk in Ginger's step, the deep love in my husbands eyes when he looks at me. I'm supposed to talk about this, and make a difference. So I'm going to keep talking. You can ask my husband, I usually have an opinion on just about everything, and I usually want to share it. We go through this life looking for people to relate to us, to understand us, to be compassionate towards us because it makes us feel like we are not alone in this world. We look to people who may have gone through something similar to us and share with them, because they will UNDERSTAND without judgement. We are powerful in each others lives, so powerful. We must love one another without judgement. It's the only way we can learn, and relate, and be compassionate towards one another.

http://www.prescottumc.com/sermons.htm
(wait for this link to show this morning's sermon by Rev. George Cushman)

Here's to a great week for everyone - I get a normal couple of days here before Wed gets here - so I'm going to grab on with both hands and ride.

Saturday, May 23, 2009

Nosferatu?

We ran errands today, and I got a little sick while we were out - but I think I just needed to eat - cuz after I ate some lunch I felt a bit better. It's frustrating, because my appetite is nothing like it used to be - I don't get 'hungry' really anymore. I just know I need to eat because my body starts feeling bad, if that makes any sense. Don't get me wrong, I'm glad to be finally getting this baby weight off - just a real shitty way for it to happen is all, don't cha think? We as moms of young ones know too - when we feel bad and we're out somewhere - we need to just plow through it till we get home, we really have no choice. We were all together today, but PJ and Madeline went in one direction for a bit and Ginger and I in another - and I was suddenly dealing with a physical state I wasn't accustomed to, and it was a little scary. All is fine, it was just a bit scary is all - and to be out in public too (at the mall, how cliche).

As I make my way through malls and Sam's Club full of people, I'm so much more aware of how I treat people. I was always the type to make conversation with everyone and anyone before my diagnosis - and I'm still doing this now. It's just a more genuine type of conversation. I thought I could get people to talk before - BOY do they talk now! And it's so interesting to hear what people have to say. I wonder if I will be able to have the same effect on people and conversation when my hair falls out - I'm really curious to see how people react to me. I hope it doesn't effect my way of being around people - I hope by me just saying this will make me aware enough to stay true and not slide into an insecure state of mind. Although, I'm sure that is very common. As long as I have the silly 'I lost my hair' pity party, then get over it and move on, I'll be just fine. But I think I'll deserve a little pity party. Usually those last for about the time of a good cry, then I'm good to go. Again, I seem to feel everything the moment I feel it - not one to hold things in anymore. Especially now.


On our errands today, we went to the WigWam up here (I know), where my new good friend Mary Jo called me to come in and check out some new scarves she just got in. She tells me she's going to make me what we call a 'Captain Stubbing' which is like a hair hula skirt for your head - you wear it with scarves and hats to make it look like you have hair underneath - without wearing a full wig cuz that would be too hot. Cool eh? She came out with a wig from the back and told me she was going to make one for me. She's just lovely. Then Madeline wanted to dye her hair pink, so we compromised by going to Sally's Beauty and getting her pink clip on hair. Whala! She's happy and I'm the coolest mom. I start looking at hair dryers - which I finally ask myself, 'why are you looking at hair dryers?' - then PJ asks if I need to get anymore detangler. I just look at him - and he says he's sorry. We both giggle.

I have heard people say to me recently 'you sound really good with this!'. And I do - most of the time. My good days lately have CLEARLY outweighed my bad days lately - which I am very thankful for. I am continually renewed in His spirit, because without Him, I could not make it through this journey. I am learning to trust and turn to him more frequently - and it is so hard!!!! I still battle with the need to do this on my own, and I am reminded in so many ways that I do not have to. So when I hear people say "you sound good" or "you're doing really well" I've started to hear it differently "we sound good" and "we're doing really well". He's totally got my back in this, I've never been more sure of anything in my life.

Some friends we haven't seen in years are coming up to visit us tomorrow, which I'm thrilled about. (another blessing this cancer has brought us, reunited friends) So we're excited to meet them after church and spend some good time catching up. Travis is a friend of mine I have known for years, we used to do improvisational comedy together and this tiny bakery in Phx years ago. I told him he needed to get up here quick before my hair fell out so I wouldn't scare his little boy. (i'm kidding here) See - there's a wierd part of me that thinks I'm going to look like Nosferatu when my hair falls out. I don't know why, but that is just what I keep picturing. My husband continues to reasure me, 'No Dina, you are not going to look like Nosferatu". I love my husband.

Friday, May 22, 2009

The Burn Means It's Working!!!

Will keep this short this evening, not much to tell. My side effects today are not nearly as dramatic as they were last week, which is good - right? I get very confused, sometimes the theory of 'the burn means it's working' call fall a bit short. I mean, according to Lisa, my friend who is a dental hygenist (and makes a mean chicken corn chilli) says that burn is bad - but when it comes to my reaction to my chemo treatment, part of me feels like if I 'm not feeling miserable, maybe they gave me the wrong stuff? Silly, yes - but on my mind in any case. I slept most of the morning, and stayed in my jammies all day - literally. I haven't done that since I was like - well, a long time ago, we'll leave it at that.

My tummy has been churning all day, that's really about it. I took TUMS but that didn't really seem to work - so my father graced me with a bottle of his Gaviscon - which is revolting. Absolutely revolting tasting - why aren't all these things just regularly flavored? Who wants 'chalk' flavor? No one! No one does! Why do they make things that taste like this? Arg - anyhow, it worked. Once I got it down w/o throwing up - thank God.

Then Jennifer Medina brought us the yummiest pork chop dinner this evening (suggestion of serving this over garlic toast - BRILLIANT! that's how we are going to eat pork chops from now on) - thank you so much. I wasn't sure if I was going to be hungry for anything, but this was perfect - and so nice to not have to worry about cooking for my family. How blessed we are to have such wonderful friends to bring us meals - this helps so much, you have no idea.

I have adventurous plans for errand running tomorrow - we'll see how it goes. We usually start out, and the rule is if I start feeling tired or weird (I call it chemo brain now) we come home and I rest. Hopefully, today was the worst of it. So - I'll pray for no chemo brain tomorrow so we can go grocery shopping. It's the little things, really.

Nighty Night
;-)

Thursday, May 21, 2009

Cancer + Relationships = ????

Today went well - and I love the fact the afternoon here was filled with thunderstorms and rain and cool weather - we opened up the house for the latter part of the day and evening and just let all this fresh air in, it felt great. I'm feeling ok - not the same as last week, which is a little frustrating, but I'm sure this is common. I just had some stomach pain start this evening which I'm trying to control with antacids and anti-nausea medication. We'll see.

It's interesting how relationships go through a very strange metamorphosis when you tell people you have cancer. Double whammy to the relationship when you tell them you have stage 4 cancer - and I know I need to respect the way all individuals deal with this information, I mean we are all different, I realize that and respect that. Some family members didn't call for awhile, some friends disappeared - friends I haven't spoken to in years - and I mean like, 10-15 years, I'm talking to on a daily basis now, friends I wasn't real close with now know me better than some family members, friends distance themselves from you and make it about them and what they can deal with; but for the most part - I have such a renewed sense of humanity. I have never, in my entire life, been lifted up and embraced by a community like this community has done for me. People have showed up for me in ways I have never experienced in my life. Given the current economic climate, this is completely overwhelming and blessedly reassuring. We are all put on this planet to love one another - that is really the threadline through all belief systems. If we all just followed that, could you imagine the power. Well, I am experiencing this power now. And while my relationships with people continue to evolve, I am confident that me wishing everyone well and good things can only do them, and me, good in the end. Now, that's not always easy - there are many times I want to drop the ol F bomb and scream out loud (which sometimes I do in private I'll admit) but for the most part - I am so proud to join hands with this community who have given me the power, or helped me realize the power within myself, to fight this thing head on. I don't look back, and only look forward and pray and stay strong and laugh - God yes, laugh - ALL THE TIME. You wouldn't believe the amount of material there is at these chemo treatments - there's a sitcom waiting to happen here. But I digress. I guess my point is this if I even have one tonight - I'm focusing on the relationships that are moving with me through this journey, not holding me back - I must - I must fight with those who are fighting with me. And I thank you God for putting all the pieces into place for me, for organizing this team or amazing individuals, I cannot and will not fail. Someone said to me today "ya know, I just hope this doesn't all die out, ya know, you have a long haul ahead of you and the momentum may fade for you". Hmmmmm, well let's look at that for a moment. While I may not expect every day to be full of pink t-shirts - I am humbled by the fact that there were may days that were - when I needed them most to be. That is what I hold onto, that is where I fix my mind in times of fear - this is what God has given me. Now it is my duty to follow this through to the end. I have enough momentum for myself because of this community to get me through all of this. When it's your life, it means something a little different than something else. Momentum? Not a problem.

Well, I think I've rambled on enough on this subject - now that this is out of my brain, I'll be able to sleep much better. Thanks as always for reading, and your prayers, and your - momentum. ;-)

Wednesday, May 20, 2009

Cancer? We Have Lift Off!!!

Today's treatment went perfect - thank you God, thank you all for your prayers. My body has acclimated itself to this, and we had a great day today. (as great as it can be when you're getting poison pumped into you, but you catch my drift) I had a wonderful set of nurses tending to me today - and my blood work came back, to quote my doctor - "perfect". So I really feel like I'm on my way and into a groove now. I have to say I was a bit anxious, but a quick prayer with a friend on my way in and my own little prayer before they hung the bag of Taxol and I was good to go.

I met the most wonderful new friend today. My doctor thought it would be helpful to meet a patient of hers that has a similar scenario to mine. She is wonderful. Her name is Ann, and I've attached a pic of her and I today while I was having treatment. She is so inspiring and wonderful - diagnoses originally in 1997, metastasis diagnosed in 2001 - and now remission. She is so sweet. We exchanged email addresses and will stay in touch.

Wonderful CAT watched my girls for me today, and I thank her for this so much. My treatment days are long - considering travel time as well. On a good day like today, we left at 8:30 am and got home at 3pm. These are long periods of time to ask ANYONE to give up, and I am so graciously blessed to have people like CAT and my other mom Nancy to give up their time to help us. Thank you. (well, it doesn't hurt that my girls are obnoxiously cute and complete angels too, but who's bragging?) Seriously, I can't thank you enough.

I feel good tonight, just tired. Only because I didn't get much sleep last night - like 3-4 hours at most. The medication they gave me to take last night before treatment was a little harsh on me. Couldn't sleep. So I'm tired tonight, but really feel great. (thank you steroids!!) We had a meal made for us for dinner tonight (thank you Jennifer) so that made dinner time a breeze, then we all took a walk around the neighborhood tonight for about 30 minutes. It was lovely. I feel good - as good as I can, I'm just so eager to continue to fight this thing. I pretty much know what's coming tomorrow and the next day - so hopefully there won't be any surprises, and I'm ready if the rash thing rears it's ugly head again. So maybe this is a new routine laying itself before us. I'm praying for that - routine is good, very good for Dina. Ahhhhhh - routine.

OH - you know what's funny - this is a personal observation of mine, so sorry if this makes anyone uncomfortable. In getting out of the shower, I notice that FINALLY the swelling has pretty much gone completely down in my right breast where the excisional biopsy was done - do you know that finally my boobs are the same size? Finally - the girls match - go figure. PJ of course had to confirm this for me - which he HATED doing (;-)) But who would have known - now that they finally match, I gotta get them removed most likely after the first of the year. Which, if you think about it - they'll REALLY match then. Woo Hoo! D cup here we come! (that seems like such an easy decision now - funny how things change so quickly when you're life is at stake)

Madeline is back to school tomorrow, and I get to go to MOPS tomorrow like a normal mommy which I'm thrilled to do - so of to bed I go. I also took some pics of what it looks like just outside the cancer clinic - this place was not put here in Sedona by mistake - it is the most inspiring, peaceful place - such power. I know I have the most wonderful medical people taking care of me, and the most wonderful family taking care of me - which has stretched farther than I ever could have imagined - I consider everyone praying for me my family - they continue to lift me up and I feel this every day - the pics don't do it justice. Just breathtaking.

God Bless -

dina



Tuesday, May 19, 2009

French Fries - I always want french fries.

Went to lunch today as a surprise w/ my girlfriend Jennifer and when she asked me what I was hungry for - I said french fries. I'd like to blame this on the 'chemo' but I really can't. I think I always will eat french fries - with ketchup. Yum. So she and Ginger and I went to Whataburger for lunch today while my car was being fixed and had a lovely time. I kept Madeline home again today for safe keeping, make sure she gets a couple full days on these antibiotics. She's doing better today - only one spike of a fever. Think we're on the homestretch. Thank you Lord.

I am changing. I am changing rapidly. Not growing third arm or anything like that - changing inside. I've noticed this about myself the last couple of days. I'm kinder, I smile more - and I mean, to EVERYONE, I am way more patient, I love deeper. I look at people and realize I don't know what's going on with them or know anything abou them - so I just smile. Sad it had to be cancer to give me all of these things, but in a weird way, cancer is making me a better person. It has already taught me so much, and my journey, really, has just begun. It has taught me humility, the human spirit and how much that spirit and prayer can actually change the way I feel. It does just that - changes me. It is absolutely amazing. Jennifer and I spoke today about surrounding myself with what makes me feel good - and I have to say, the past couple of days I have physically felt the difference between surrounding myself with things that make me feel good, and surrounding myself with things that make me feel bad. It is so strange. I wish I could give you an example to explain this in a clearer form, but I just can't think of one. I guess I'm consciously seeking out the good, when before, I never really cared, I took whatever was coming at me and dealt with it. Like I've learned some new, secret power. Does that make sense? I must share with you a section from a devotional I'm reading written by women who have gone through what I am going through, and designed for each day of chemotherapy. It was sent to me by one of my wonderful sisters on the Advanced Breast Cancer site I am a member of, and I have to say - this book has already spoken to me more than anything I've read thus far. The book is Praying Through Cancer - Set Your Heart Free From Fear.

"I was riding an emotional roller coaster, and it wasn't pleasant. Every day, it seemed I would talk to someone else who had been through cancer. Some stories lifted my spirits. Others lowered me to despair. My ability to empathize is a bit too good. Emotionally, I was becoming the person I had talked with last!"

This is EXACTLY how I have been feeling, until recently. It was so comforting to finally read what I was feeling put into words.

My journey continues tomorrow, and I would be lying if I didn't say I had a little anxiety about it. I don't want to have the reaction I had last week - I just need to pray I can remain strong enough to not 'will' my way into another reaction. I can will my way in the other direction.

Thank you for reading this by the way - I don't think I've said thank you. This blog helps me in so many ways - it helps me sleep at night. Thank you for your continued prayers and wonderful thoughts. They help, they really, really help. I have blood work at 9:30am and treatment at 10:15. Check in w/ you all tomorrow - after I have some french fries of course - after all, it's the chemo - the chemo makes me do it!!!! ;-)

Monday, May 18, 2009

To Pluck - or Not To Pluck - That Is The Question

Now, my husband would argue the following: 'Dina - you PLUCK a chicken, you TWEEZE your eyebrows.' True you may say - however, I have always said PLUCK when referring to my eyebrow grooming. As I sat on the bathroom counter grooming my eyebrows this evening, which my wonderful aesthetician, Victoria, in NYC taught me (I miss her so much) I thought to myself - why are you doing this? You very well may lose these, in fact, you WILL lose these, so why not let them grow all long and bushy and unruly? This is where the nonsensical 'Dina' emerges - because I must be groomed. I am noticing more about myself and my little idiosyncrasies through this experience, much to my chagrin. What I am hopeful of, is this will lend itself for me to be just as meticulous when I lose my hair - head and otherwise - to really keep myself looking as decent as I can. I must say, having gone from Corporate Bitch in NYC to stay at home mom, I am guilty now of not really taking care of my appearance at times. It's also REALLY easy to get away with this up here. So, hopefully, this is a swift kick in the ass for me to get my sh*t together and start paying attention a little more.

Madeline was OK today, I'm still fighting this fever of hers which came on full force 3 different times today. So scary - and I am SUCH a pushover when she is sick. I let her eat whatever she wants, sleep when she wants, stay up as long as she wants. I never thought I would be that way, but I am. I'm anxious to see how she does throughout the night tonight, and if it's not any better, I'll call the dr. again tomorrow. Ginger, my sweet Ginger, now screams and cries (and I mean REALLY cries) if I'm not a foot away from her at all times or holding her. Oh Joy. Good thing she's wicked cute.

It is my Daddy's birthday today, so my hubby watched the girls after we got them bathed so I could pop over to see him and wish him a Happy Birthday. I love my daddy so much. It means so much to me to be so close to him to be able to pop over and see him. We had a great chat and laughed a lot - and cried because the card I picked out for him which made me cry made HIM cry too when he read it - guess I picked the right one. Then he opened his gift (The Good The Bad And The Ugly and The Godfather on dvd ) PJ picked them out - could you guess? My dad LOVED it. Personally, I don't get the spaghetti westerns - must be a guy thing.

Had a pretty amazing moment w/ my dad and Nancy this evening as I was leaving. My father, in all his wonderfulness, asked me if he should move forward with PJ's application for the Masons (he's joining and we are thrilled). My dad was concerned that maybe he should hold off because of my treatment and such, too much to handle and stuff. Without missing a beat, I responded to him as follows: "Dad, life doesn't stop just because I have cancer - it just gets a little more interesting is all - please, submit the application and move forward with it, PJ needs this. I'm fine and if I need help I'll ask for it, I'm getting better at that." Can you believe this? Now, let me back up a minute by saying that I was listening to a cd given to me by Kelly Garasha (thank you by the way, it is AMAZING!) and right when I turned into my dad's place, I see the dark clouds being broken in two by these amazing beams of sunlight shining down into the horizon - right when track #2 started playing. I burst into tears. Whether you believe in God or not - something was speaking to me at that very moment and I felt it. Amazing. To me it was God - and it was real. I gave thanks.

So today, feels like I have a better grip on the cancer thing. Or a better grip than I had yesterday. BTW - I think I"m actually going to try to get FUBC as a license plate - if I can BS my way through the DMV with some bogus acronym. I'll take any and all suggestions you may have. ;-)

Sunday, May 17, 2009

Another Mountcastle Sunday

Woke up feeling pretty good actually - however, I slept horribly. I couldn't sleep actually, not well at all. Not really sure why, just couldn't sleep - and trust me - I rarely have this problem. This must be another side effect. So I was eager to actually have to get up and out of bed this morning and we were up and out to church. Church was really great this morning - one of those mornings full of strange distractions, but overall really great. We stopped my Target on the way home and all seemed fine w/ us. PJ needed to go to my Dad's place to work on their computer, so he decided to take Madeline w/ him - she loves hanging out at my dad's ranch. I was busily working here at home while Ginger napped purging out the girls winter clothes and merging in the summer. PJ got home w/ Madeline and she was literally beet red - I asked if she had just been outside, but she was very lethargic as well. We waited a bit to see if it was just the weather but we couldn't get her to cool off. I put her in a cool water bath (which is just awful for them but this has worked in the past) and then held her for awhile - temp was again starting to rise. So - you guessed it - after I took her temp a couple times and it fluctuated between 101 and 104 - PJ took her to the emergency room. (she said her throat hurt too - of course I'm thinking strep) I wish I could have gone, but I really shouldn't be around an emergency room right now. Fortunately, she did not have step - but did come in with a 103.5 temp which they treated and watched till it broke, now we have her back on antibiotics. Can you believe this? I didn't even call anyone because this is just the norm for us now it seems. This is what must instill the 'calm' in mothers I always wondered about. She is fine now, in bed and medicated. Poor thing.

Needless to say, I've gone through a gamut of emotions today - for one reason or another. An extreme high from church, to a gradual low this evening. I called a family member earlier today and was greeted with the following when I said it was me on the phone " Have you lost your hair yet?" I continue to be speechless at times like these - I realize in the big scheme of things that my hair is the LEAST of my worries, but I am still having such a hard time coming to terms with losing it. This comment just resonated badly with me. Then another earlier this weekend I mentioned a gym I was thinking of going to through chemo and was told "a lot of cancer patients go to that gym!" Excuse me? I still feel like Dina, but I feel like I'm starting to be treated like a cancer patient. Then, this evening, while having dinner - my husband says in response to the comments above I was sharing with him "Life will never be the same for us, never." Now, I think I understand what he meant, but I was just sent into such a guilt I cannot explain. I excused myself from the table, went to the bathroom and just cried. Just cried and cried. I prayed to God and was apologizing - apologizing - I know how stupid this sounds, but I feel so responsible for this illness by what it is doing to my husband. This is NOT what he signed up for, and deserves so much more. I feel so - bad. I don't know how else to say it - I am the type of person that will take responsibility for the bad weather if I can - so someone saying 'don't feel that way, it's not your fault' doesn't just make the feeling disappear for me. The feeling is real, very real. I prayed hard, that God will help me work through this feeling and help me find some peace in this. I'm just so sad to be such a burden. Dina is not a burden on anyone - and I really feel like I am today. Like people (some, not all I realize) aren't seeing me anymore, they see the cancer I have - and that just confuses me and makes me sad and pisses me off.

I still have these red freckle things on my feet and shins, and my throat is sore this evening, and I feel what feels like 'dry spots' in my mouth. They don't hurt, they just keep making me think I have some piece of food stuck in there or something. More annoying than anything else.

I'm going to turn in early tonight, and despite my better judgement, I'm going to take a vicodin so I'm sure to sleep through the night. PJ has to work tomorrow so it's pretty important I get enough sleep.

Guess I needed to vent this out - I don't have some smart quip to end this with, or some strong victory emotion that I've realized to make me sound all centered and together. Maybe I'll get that tomorrow. Then again, tomorrow is another day. The most I can do is pray for this - pray to work through it, not deny it, not hide it, not ignore it - work through it. With God's help, I'll come out on the other end of this a stronger, better person, wife, mother and child of Christ.

Saturday, May 16, 2009

Saturday - In The Park - (well, Sam's Club really)

Felt much better today. Woke up to my sweet Madeline again, who grasps my hand in hers in the early morning hours (we both kind of wake up together at times then fall back asleep - we've done this since she was born) and she says to me "I'm right here Mom - I'm right here". I couldn't make this sh*t up if I tried - this child of mine is connected to me in ways I cannot comprehend. She is amazingly healing and comforting to me - without even trying.

So my lovely husband let Madeline and I sleep in while he tended to Ginger, who doesn't know how to sleep in yet. Then when we all finally got up and moving this morning, I did feel much better. My leg joints were still a bit stiff, but only like I had run a good run the day before, that kind of tightness. Not too bad. The back of my neck is tight, but NO RASH!!!! This is really good - I was pretty happy. I do continue to take the anti-nausea pills in the morning only - don't want to even try to see if I need them, I just take them. So we ran errands today. Went to Home Depot and Sam's Club then got some lunch. I was ok - had to move much slower than I am used to moving - which is really strange to me. I mean, I'm tall anyway, and my stride is pretty long - it takes a normal person like, 3 steps to each of my 1 step - but anyway, it was difficult to walk like, well, like everyone else seems to walk in this town - too damn slow! I think this is God's way of making me 'slow down and smell the roses' - it's working. My head was a little fuzzy most of the day, but I was glad to be up and around and out in the world with my family.

The car got here last night, forgot to mention that. My husbands old boss and coworker were gracious enough to drive all the way to Sierra Vista and back here to Prescott in one day - yes, you read that right, they drove there and back in one day to deliver us the vehicle from PJ's grandma. Not to mention this car was arranged for us within a matter of days by PJ's Aunt and Uncle and cousins in CA - PJ and I discuss this often, that we no longer can find the words to express to people the thanks they deserve for the help they have given us. The english language just doesn't seem to have the right words invented for us to express how sincerely thankful we are to all of these people who have been so giving and nice to us. I just don't know what to say. We thank God everyday for the outpour of support we have been given and continue to receive. Again, we are truly blessed. To know things like this, meals, company, childcare, and some financial things as well, are not the huge concern they normally would be to us in dealing with all of this crap, is such a weight off of our minds. I don't want to even think where our heads would be if our scenario was different. We pray for others in our same situation to have the support and love we are so very blessed with.

Church tomorrow, let's hope I feel just as good, if not better than today. I do have this very wierd red rash looking thing on my legs near my feet. I'm fair skinned anyway, so they almost look like little red freckles - they don't itch or anything, they're just there. I noticed them when Madeline and I were giving ourselves pedicures this evening. Ginger kept crashing our feet party though, which bugged Madeline and made me laugh. My awesome MOPS girls dedicated their pedicures to me recently by having their toes painted "Dina Pink" - so Madeline and I have followed suit. PJ even said he would paint his toenails pink - what a man what a man what a man what a man what a mighty good man. (he's a mighty mighty good man)

Friday, May 15, 2009

Is that a rash or are you just glad to see me?

Well, obviously Fridays are going to me my not so good days. Woke up to the a rash on my arms again, then the more I moved around the further the rash spread. Itchy rash on my arms, legs and belly - so I called my nurse and doctor and left a message (it was like 6am) then laid back down. Still had pain in my hands from the night before as well (like when you would sprain your wrist playing tether ball or something - I'm dating myself now, aren't I?) Anyhoo - the rash subsided by the time I woke up a couple hours later - but the guilt did not. My husband certainly did not plan on me being incapable of taking care of the girls today - so I felt horribly guilty, a feeling I pretty much feel on a regular basis these days. My doc and nurse called to tell me I could take Benedryl up to 4 x a day, and vicodin for the hand pain. Not really an option I found out w/ me and the girls alone, and Advil doesn't really work either. My dear friend Jennifer came out (again, hello guilt!) and brought us dinner and stayed with me until PJ got home from the store. She is truly a saint.

In retrospect, these side effects today are really not that bad. The hand pain is the most annoying because it keeps me from effectively caring for Ginger (lifting her, holding her, etc.) But it beats nausea or any of those other type of bodily unpleasantries. So, I figure so far so good. My typing is really bad, so if there are misspelled words, it's only cuz I can't get to them real fast. My apologies. Now the muscle/joint pain is in my legs and feet as well, again, common I'm told. So I guess this is what arthritis feels like? How awful.

I watched most of that Farrah Fawcett special tonight, which I don't know if it was or wasn't a good idea or not. Part of me wants to say yes, the other says no. It was difficult to watch, I can tell you that. But I'm glad I did it nonetheless. I certainly did a lot of praying through this, for her obviously, but for my own fears as well. This disease is at best - humbling - no matter what form it comes in. I didn't even know anyone could get anal cancer - how horrible, how horrifically horrible.

I'm hoping today was my worst day - and at least now I know I will need help here on Fridays - for a couple hours so PJ will be able to get some work done next time. He is such a Godsend, truly. We'll have to figure out how to get someone here with me on Friday's. It is so hard to be helpless. It is so hard to accept help when I am so used to being in charge of my family. By God's grace, I will persevere through this, with all these wonderful people by my side. Thank you for your prayers and all you've done to help us through this. One treatment down, one treatment less to go - right??

dina

Thursday, May 14, 2009

Is this a side effect or am I just really embarrassed???

So, I woke up today feeling really rested. Got my girls up and going for the day and really had energy. Little did I know this was because of the massive steriod dose they gave me yesterday to counteract my yukko reaction to the chemo. In any case, felt pretty good today. When I woke up and started to get into the shower, the palms of my hands and the bottom of my feet itched like crazy. Wierd. Then, when I went to my first MOPS Leadership meeting after dropping Madeline at school and Ginger in the nursery, I felt warm. (yes, I kept my crazy schedule - we'll see how long THAT lasts) Then I felt like I had a sunburn on my face, but only the heat part, not the burn part, ya know? In looking at myself in the mirror, I saw that my face was completely reddish - looked like a sunburn. After speaking to my clinical nurse, she tells me this is from the steriod medication they gave me yesterday. This lasted all day pretty much, from like, 9-4pm.

Then once I got home we went to Verde Valley again for PJ's dr appt for a vasectomy. D-day is July 10th - pretty simple procedure, and we were happy but sad that it was happening. We really wish we could have more kids to be honest, we just also wish we were younger and I was in a healthier state. In any case, this will be added to our schedule. Bring on the banana hammock baby!!!

This evening was full of lovin on my kids and hubby, pizza and salad for dinner. My hands started hurting this evening, hurting in the knuckles where you bend your hands and in my wrists where you rotate and bend your wrist. You notice this when you go to pick something up or use your hands with any strength. Then I noticed my hands started to itch a bit. I went to the listing of side effects of the clinical drug, and hand and foot pain was indeed listed, along with dry itchy skin. Yea. I just noticed a rash forming on the inside of my arms, red raised itchy rash. I just applied some benedryl itch cream, looked back at the list of side effects and indeed, blisters or rash on hands and feet or rash was was also listed. Yea again. I wonder if these side effects will happen all the time, or just some of the time. I'll call my nurse in the morning and find out. Looks like I'll be doing a lot of that - guess I'm hitting the ground running here, eh? Just kill this stuff, just kill it. Kinda hurts to type so I'm signing off for now. My hubby is giving me a back rub tonight, which really feels great - he's the best.

Much love and thank you to all - thank you for your cards, your prayers, your inspirational words - and thank you God - for all the wonderful things I have and all the wonderful people in this world and community who care about me. I am so very blessed.

Wednesday, May 13, 2009

Dina - On Tap


Well, the day has come and gone. My first chemo treatment. It was a lot more entertaining than I had anticipated. Everyone I talked to who had this before, or new someone who had this before - said nothing really happened, that you anticipated something to happen, but nothing really happened. Until like day 2-3 or 4. Well, something happened to me. I had the reaction to the Taxol that some, not most, but some people have. (o course I did!) I had a rush of heat to my chest, shortness of breath, then intense heat to my face, followed by horrible nausea that left me wretching into a barf bag (not throwing up, just wretching, like that makes it better) SIDENOTE: First of all, these hospital barf baggies were great, they had this plastic outer part that made it somewhat discreet with 5 people standing around you watching you. Anyhoo, my doctor, nurses, clinical nurses all took very good care of me - they immediately stopped the Taxol and put me on another bag of Benedryl and Adavan (sp?) for allergic reaction and nausea. Now, I was REALLY groggy cuz they had put me on a bag of both of these before we got started. The tummy pain felt like really horrible gas pain after the nausea went away - that was really the worst part. So once I recovered from this reaction, they started the Taxol again, and I did just fine - Thanks Be To God. If I have been allergic to this medicine, we would have had to start all over again. So - 6 hours later, we left. Yes, 6 hours - it was a long day. We did stop by the pharmacy and get anti nausea medicine so I can nip this in the bud before it happens again. It was really awful - much worse than morning sickness - it was like food poisoning, except about 5 times worse. Makes sense if you think about it - my body was reacting to poison being put into it - it did what it thought it had to do to protect me. Pretty cool - extremely uncomfortable, but cool.

Of course I asked - 'will this happen every time now??' - 'no' they said. Thanks again. Whew. That would have made this extremely tough. But I am comforted in the fact they ALL were right there to help me through this reaction and I felt safe, and protected. The look on my poor husbands face though - bless his heart. He was afraid and so desperately wanted to fix it. I was given a real reality look into his heart at this moment, I love him so much.

Before I went to have my treatment, I met w/ my doctor and showed her a picture of my kids. I said "I know this may be a bit dramatic, but I wanted you to see their faces. Please look at my girls, and tell me you are giving me everything you've got to kick this thing. I can take it - give me everything you've got." She looked at me and said "Dina, that was the first thing I thought of when I read that your cancer had metastasised - I thought of your age, and your girls. I giving you all I've got." I love my doctor. She also mentioned the surgery again as well, looks like we'll go back here and discuss this after the treatment is over. Since the right breast was the primary site, that does stand for something. We'll see. Personally, since this is estrogen based, I'd be willing for a full hysterectomy once treatment is over as well - gotta get rid of those estrogen fueled girls parts. Drats. But - this is WAY down the road.

Ginger is having trouble falling asleep now, so I'm going to cuddle up with her in my bed and go to sleep. Gotta get Madeline to school and MOP meeting tomorrow. Thank you all for your prayers and thoughts today, it got me through a tough one. Thank you.

Now I just wait for the side effects. I think I'll just try to live my life through them, pay attention to them when they arise, and try to ask for help when I need it. (the last part is the hardest)

dina

Tuesday, May 12, 2009

Sweet Emotion.

That was by far the best Aerosmith song ever. And completely appropriate for my day today. Today I had a somewhat normal day, taking Madeline to school and Ginger to the dr for her 12 month check up (3 shots - but she took it like a trooper). All day though was this underlying fear of what is to happen tomorrow. I know this is a good thing - and finally, thank you God finally, SOMETHING is happening to kill this stuff. That - will feel good. It's the side effects that is the big unknown to me. I'm trying really hard to hear the advices of women who have been there - I know I just have to face it and plow right through it. I've prepared the best I can, I just need to do it now. My dear husband knows when I need some quiet time alone, and graciously suggested I take the car into town to get gas and milk for the girls after dinner. Which I did - I listened to some music given to me by Kelly, which was just beautiful - this will definitely be on my 'Chemo Playlist' for my ipod. Thank you Kelly. And mostly I just prayed out loud. More like chatted w/ God really - about how I was feeling, I was scared, anxious, ready, not ready, worried, angry, every emotion you can imagine, I think I feel - daily. It's exhausting. Bottom line? - I'm a really good mommy to my little girls. I'm a really good wife to my husband. I'm a really good friend and daughter. Nothing is going to stop me from continuing to be these things, nothing.

Then my mind kinda wandered for a minute - maybe I'll be electric or something? Or magnetic? Maybe I'll be like, bionic - that would be cool. I think I've been watching way too many Xmen movies. Ya think?

I'm going to keep this short tonight as I want to get a good night sleep and cuddle w/ my hubby - so I will close with this.

We were saying grace tonight before dinner, and I thanked God for all the wonderful family and friends he has blessed us with, and to help us accept help from people because we don't easily do that. I then started to ask for strength, courage and conviction for tomorrows treatment and I started to cry. Madeline asked me "mommy, are you crying?" and I said "yes" Then she reached over, we grabbed hands and she said "I'll take care of you mommy." Blessed - I am truly blessed.

Thank you as always for lifting me up in prayer - my appt is at 10:45 tomorrow - may the champagne of chemo flow bright through me tomorrow and kill these cancer cells in their tracks!!

Game On!

Dina

Get an attitude adjustment already - Geez!

Just wanted to quickly post this morning and apologize for my horrible state of mind last night. Usually I may start there, but end up on the other side - that is what this space does for me - it just didn't last night. So I'll get my game on this morning and get with the program.

I thought this was ironic this morning - I continue to tweeze out my grey hairs in my head (which are much more abundant as of late) - how funny, you'd think I'd covet any hairs I could get, but it seems I'd rather be bald than grey.

I'll write more tonight my friends - have a great day and God Bless.

Dina

Monday, May 11, 2009

That Darned Elizabeth Edwards!!!!

I have to say that today was probably the best day I've had in a long time. I woke up this morning to a smiling Ginger (she was in our bed with me this time, PJ was in Madeline's bed) and really kicked myself in the rear and got things going the way I used to get the house going in the morning. It felt great! PJ and I went to Sedona to have my EKG repeated, then came home - and Nancy and I went out and I got myself a wig. I know, I said I wasn't going to do this, but I wanted one just in case I wanted to do this. I figured, if I didn't get one, and found that I suddenly wanted one - I should get it now rather than go looking for one in some kind of desperate mode. In any case, it is pretty, very close to my new short hair cut - and it will feel really weird when and if I decide to wear it.

Then, I came home and the girls and I played out in the sprinklers in the yard and had a great time. It was fun.

We started our normal evening routine of baths and whatnot, and we watch Brian Williams nightly news (or listen rather to him as background noise) and he played a clip of the Elizabeth Edwards interview w/ Matt Lauer this morning. Now, I didn't see the entire interview, I simply saw the portion Brian Williams played this evening. But, the part I saw showed her explaining that her breast cancer had now spread to her leg, she didn't know what bone that was called, and that her team of doctors were really playing it day by day. Then Matt Lauer asked her if she was preparing her children in any sort of way, and she explained that she was trying to do everything she could to instill memories of her with her children. Hmmmmmmmm............

This really pisses me off here - and I'll tell you why. First of all, the bone in your leg is called the femur - why you wouldn't want to know that is beyond me. Also, there was such a sense of 'giving up' in her demeanor, I was suddenly stricken and saddened by this display - and scared to tell you the honest truth! I realize my husband hasn't cheated on me, publicly or otherwise, so maybe her sense of despair has some true origins here, but as a person full of hope with stage IV breast cancer, to see someone in the public eye who basically took it upon herself to represent this disease in the advanced stage seem to 'give up' on it - really pisses me off. Now my entire evening has been full of fear again, darkness, and I'm just now starting to pull myself out of it. ARG! Shame on you Elizabeth - pull yourself up by you bootstraps and move forward and fight this thing! You're living right now, make a difference and show some hope and promise.

Ok, sorry about that. Not really, I needed to get that off my chest. It's just I hate this roller coaster of emotions I go through with this thing, I really hate it. o high one minute and so low the next - one single thing can boost me up or drop me to the ground. What is the answer here?

Changing the subject now - the clinical trial drug has been chosen for me and it is..... (drum roll please) Sutent!! Now I will take Taxol (this is the chemo drug) once a week for three weeks then a week off and a daily pill called Sutent (this clinical drug attacks the cancer from the protein side). I prayed about this after my ekg - to please just put me on the regimen to kick this thing - I didn't really care which drug I got, just as long as it works - but I guess I'm a little happy it's the sutent as it is a pill, the other was an injection. So one less injection for me. Yipee!

I think I need to go cuddle with my husband now - need to get over this funk mood of mine. Can't seem to shake it off - if I keep typing I think I'll just start swearing even more.

Mucho love to all and thank you again for your prayers. Tomorrow is another day - thank God.

Sunday, May 10, 2009

Happy Mothers Day!!!

Happy Mothers Day to all!!! And you don't have to be a mom to be wished a happy mothers day in my opinion. We women mother each other all through our lives - what would we do without each other???? So every woman is honored today. Happy Mothers Day.

Had my date night w/ my hubby last night, and we had a great time. Xmen movie was awesome (thank you CAT for the tickets - popcorn was yummy) and then, because we live in a small town, it was difficult to find a place to eat afterwards (9:30pm - I remember in NY not even going out until 10pm - oy) so we ended up just having appetizers at Garcias. It was funny though, all we really talked about were the girls and how awesome they were and how much we missed them. Then we had to go to the drugstore for some kid things then the supermarket for milk, so it kinda felt like we got a sitter to go grocery shopping. But we had a nice night out. Cuddling w/ my hubby in a movie is one of the best feelings ever.

This morning was great, although PJ and I both were desperately trying NOT to relive Ginger's seizure from last Sunday as we went through the day today. Ginger is doing great by the way. I woke up in Madeline's bed, PJ in our bed with Ginger - typical. But I had some lovely cards on the table from my husband and girls which I ended up reading in the car on the way to church as we were running a little late this am. My husband got me a beautiful necklace for Mothers Day - something I had mentioned awhile ago that I liked - he remembered - and got it for me. How very blessed am I - in so many ways. Then we ran a couple errands and met my dad and Nancy for lunch. It was lovely. Came home and we all napped for an hour or so - then, our garbage disposal broke and I had to speed over to Home Depot to buy a new one before they closed. Funny how life just interrupts everything, doesn't it? Did I really need to speed to go get this, no - but I wasn't about to put my hand in and pull out all those food buggers - no way. I have my limits.

So this week is again, crazy - I just want to settle into the 'new normal' - whatever that is going to be. Mon I have to go to Sedona for them to re-do the EKG test - not that there was anything wrong, quite the contrary - but for the clinical, this needs to be done a certain way and it wasn't done the right way. Arg. Tues is normal w/ Madeline in school and Ginger has her 12 month check up. So that will feel normal.

Wed is my first chemo treatment. If this works the way I think it will be, this will be my weekly date for treatment. The first treatment will take 3 hours they tell me. I'm nervous. Part of me is so scared - then another part of me is so ready to fight this, and this is the first step towards doing that. Just knowing I'm allowing poison to flow through me scares the shit out of me - but, this is the poison that is killing the cancer - so I need to suck it up and handle it. I guess I know I'm ready , but maybe what I'm scared of is how this is going to make me feel. I joined, by the blessed recommendation of my dear friend Martha in Phoenix, an online discussion group for Advanced Breast Cancer patients. I didn't want to do this initially - because, it really meant admitting I had ADVANCED breast cancer. Something I am still having trouble swallowing, but getting a little better now. But, this weekend I did, and I have to say - it is the best thing I've done. I feel such support and guidance in talking to women going through the same thing I am - literally, all over the world. I went ahead and put my fears out there and have already received such wonderful words of wisdom. Things like - 'don't fight the chemo, look at it as your friend helping you fight this stuff. Fighting it will make it worse for you'. That makes sense. Also, 'listen to your body. If you are the type of person to work through your tiredness, you can't do that anymore. If you are tired, you need to rest'. THIS will be the hard part for me. But with what is at stake, I must do this. Also, there are so many survivor stories that inspire me. I am so inspired and effected by positive words, prayer, smiles - they all seem to fuel me in a way I cannot describe. Unfortunately, the negative still works the same - but I'm still trying really hard to work & pray through that and come out on the other side. Boy, that is still such a hard journey though. And, I'm still pissed - pissed this is happening to me - which, accordingly to one of my new online friends, will not go away, but it will help me fight this. Makes sense too I guess. Just sucks - this whole thing just sucks. I put my girls to bed an night and pass by pictures of all of us in the hallway - and my heart just aches to go back. To go back to when I didn't have cancer - or when I didn't 'know' I had cancer? Just writing that out just now sounds completely stupid. I should be glad that I know now, and not when it was so bad they couldn't do anything about it. My doctor has already used the word remission w/ me - which from what I hear from others, some doctors don't even mention as a possible option. So I need to remember this, and feel blessed - and move forward, not backwards. Again, hard to remember.

Thurs we go to Cottonwood for PJ to have a consultation for a vasectomy. I know, timing - right? Well, this is something we decided upon awhile back, before this whole cancer thing. And, they are ADAMANT about me not getting pregnant during treatment - like, REALLY adamant. So, we figured we'd go ahead with this now too. Why not, right? We've really got nothing else going on right now. Plus, I want to see PJ with and ice packed banana hammock - that's what they give them to wear, right? I'm kidding, I love my husband dearly and commend him for doing this for us. I would do it, but can't right now unfortunately. Considering the kind of cancer I have - I would definitely do something about this now myself if I could.

Friday we have nothing planned for now, which is good - cuz that's when the effects of the chemo are supposed to surface. We'll see.

The car situation had taken a different turn in literally the last 12 hours. Our beautiful Mountcastle family has contacted us with a different option. We are officially now getting Grandma Nellie's car in Sierra Vista. Price has yet to be determined, but we've made the decision to go in this direction. Sorry - no 'F*ck You' car now. Although that car was fun to drive - I haven't driven a stick in what, 12 years? And, unlike playing the piano, it comes right back.

I cannot even begin to express how much my inherited 'family by marriage' means to me. I got to meet most of them at the reunion this past summer, and just fell in love with all of them. They are 'on my bus' so to speak, thank God. Their support has lifted me up in ways I cannot describe. Again, I am humbled by my many blessings. I just wish we all lived closer to each other.

Watching PJ install our new Mothers Day garbage disposal now - I know you all are jealous - not many moms get a necklace AND a disposal. That's ok - you can come and look at mine whenever you want. It's all shiny and new.

Love and prayers to all - and thank you again from the bottom of my heart for all your support - please keep the prayers coming.

Friday, May 8, 2009

More Support Than an Underwire!!

I actually needed a day to recoup from my Thursday. This was absolutely incredible.

So I actually woke up in a pretty good mood, which is rare these days, and excited to take Madeline to school and Ginger to MOPPETS and myself to MOPS - ahhhhhh the regular routine at last. As I stand in line to sign Madeline in to school, I notice all these people around me are wearing these pink t-shirts. Moms of other preschoolers, teachers - MOPS moms, they all seem to have these shirts on. I think this is odd, but kinda maybe figure something was going on with some group I wasn't a part of or something. Then, as I'm signing Madeline into the book, I hear a little boy next to me ask his mom "Mommy, why is everyone wearing these pink shirts?" and his mom says "this is for one of the other mommy's here at school - she is sick and everyone is raising money to help her get better". I am at a complete loss as to how to explain how I felt - to say I was touched, humbled, moved, blessed - there simply are not enough words created in the human language to describe how I feel. But it goes on -

I get into the MOPS meeting room and everyone, I mean everyone - is wearing these pink t-shirts - they say 'Game On!' which is a phrase that came from Jennifer to me after the first prayer session we had about my cancer. Then underneath this phrase is the following scripture: 'Lord my God, I prayed for you, and you healed me. - Psalm 30:2
Apparently, this has been going on for quite sometime. My wonderful MOPS moms and mentor moms under Jennifer's swift guidance have been selling these t-shirts to help raise money for me and my family. As this was all revealed to me at the beginning of the meeting, I cannot explain the graciousness I feel. I am graced, I am blessed - I am completely overwhelmed. Never in my life could I ever guess this many people cared about me and my family - never in a million years. Profits from baked goods are dedicated to me, beautiful jewelry is made for me (which makes me feel so pretty I must say), profits from home run business are dedicated to me, the list goes on. They have raised $3800 to help us offset the costs of the medical bills & gas for treatments for the next 6-12 months. I have attached some pics taken to give you a sense of what this looked like - again, never in a million years would I have guessed, never.









Again, I am so very blessed. Then I learn Pastor Mary was working the 'big' room (sanctuary) last Sunday and had used me (and quotes from this blog) in her sermon. Again, never in a million years would I have ever imagined. When I went to pick up Madeline that day, her teacher told me that Madeline was just extra loving lately. That she had always been a very loving little girl, but was extra loving as of late. She said in chapel Madeline said that her mommy has a owie in her boobie. Madeline told me in the car on the way home that they prayed for me in chapel today. Tears, just tears - tears to hear her little voice mouth these words, and tears that she even has to - just tears.

Is it possible to be able to ever imagine how many lives we touch? One thing (amongst many) that caught me off guard about Thursday was the handful of people who approached me with tears in their eyes about other relatives of theirs they had lost to cancer. Mostly, it was mothers - and I have to say, this was very unexpected for me, but also, VERY healing for me as well, because it reminded me that this experience has much to teach MANY, not just me. 3 different women approached me with questions and confessions about dealing with cancer in their own families. Now, I thought this was extremely inappropriate at first, but only because I had lost my normal sense of helping others, something I do quite naturally and quite well. Suddenly I felt thrust into my old friend, compassion, which I had lost touch with for the past month and a half. I, cancer or not, am still Dina - and Dina helps people and connects with people almost instantly - and if I now have a new insight because of this ailment, that can help and, God bless, heal old wounds in people? - than this is what I must do. What an unexpected insight I have gained. Incredible.

After this whirlwind of a morning, I now rush home to quickly pack for our overnight Phx trip - which basically means I packed at the last minute, and forgot everything. This trip was to go and look at the 'F98ck U' car - which, it seems, the consensus is to keep this lovely wording (which is actually hid quite well, not as bad as I thought) . Had a mechanic check it out and it looks like this is going to work! We're thrilled. So, we need to get the paperwork in order and hopefully we can get my dear brother in law and his partner to drive it up here for us as it isn't likely for us to be driving down to Phx in the near future.

I found myself really sad last evening - sad to be hanging out w/ Sean and Joe as someone with cancer now - something I didn't like very much. I wanted to go back. This feeling perpetuated itself into today and I just couldn't shake it. I just didn't want this to be happening to me - now, this is not to say that I wanted this to happen to someone else, not like that. I did examine that feeling though for awhile, and I have to say that I just don't want this. I want it to go away, not to someone else. I know I haven't truly accepted this yet - and the 'why me' as pitiful as that sounds, is still greatly present in my mind. I prayed today for acceptance, because I cannot focus on getting rid of this crap if I don't accept that I have it. I came up with a little mantra, if you will. Considering my chemo schedule (every Wed for 3 weeks, then 1 week off) it will kinda go like this, starting with Mon (Fight - fight - fight - fight - fight - rest - rest) Fight during the week for strength and routine for my kids, then rest on the weekend. I have to do this, I have to keep moving forward. This whole prayer and discussion with myself happened for me in the car on the way to my dentist appt this afternoon - compliments of one of my dear friends in MOPS and her husband. Again, how blessed am I - they were so wonderful and took such good care of me and explained how to alleviate some of the uncomfortable side effects coming my way when it comes to my teeth. (oh joy). No dental work can be done during chemo as I am at a higher risk for infection.

So I come home to my beautiful family - my girls screaming my name when I come through the door - like I'd been gone for a week. I think my prayer worked, because I had a sense of peace about this when I was driving home. And an even more sense of peace as I viewed the huge Ritz cracker looking moon as I drove over the mountain on my way home. Beautiful. This will be an internal battle for awhile, but please do not mistake my not accepting at times as a sign of weakness - it is not. It is a human reaction, I think. I have never been one to back down from a fight - of any kind. I mean, sometimes in a black and white type of argument, I'd take the opposite side just for the fight. (I've grown up a lot since then, but determination remains). I have a date w/ my husband tomorrow night, and I'm thrilled! Dinner and a movie - I can't wait. Let's see if this weekend can actually be as close to 'normal' as we can get - no surprises, no scares, all healthy and happy with peace, I need more peace.

Thank you all for your thoughts and prayers - they are working. I feel the sudden bursts of energy and peacefulness throughout the day. I know that is what it is.

Wednesday, May 6, 2009

God's Will? Hmmmmm.........

Today actually ended up being a good day - much to my surprise. This morning my husband and I woke up in opposite beds once again - me w/ Madeline in her twin bed and him in our great big king size bed with Ginger. These nights have got to change. Oy. Honestly though, I find it very healing to sleep w/ Madeline sometimes. She is just a very healing little child. I don't know how else to explain it. The night I got my haircut, I was reading her a bedtime story and she interrupted me to say "mommy - I think your hair looks beautiful". Such a sweet little soul she has.

Anyhoo, I went to WOW today, a Women of Wisdom class I take on Wed at the church. Unfortunately, the class that I really bullied my way into because when I went to sign up it was full - I haven't been able to participate in much this session because of this stupid cancer thing. Today's class will be the last one I'll be able to attend because my chemo will be on Wed starting next week. So it felt good to go. My girls in tow - with us all singing Beyonce 'All The Single Ladies' on the way into town (okay, Ginger doesn't really sing, but she smiles real big, claps and kicks her feet, it's adorable). The worship portion was awesome, then when we broke into our classes I got to give Pastor Mary a big hug - she even called me her favorite little liberal - I should've gotten that recorded, eh? ;-) I am not going to reveal anything about this class experience, as we all take an oath of privacy of all things shared in these sessions, which I highly respect. I will however share with you what I experienced within myself this morning, because for me, it is monumental.

A fire was stirred in my soul today. As I have stated, I know that my purpose in being placed on this earth was to meet PJ, become his wife and partner in this world, and have these 2 angelic little girls and be their mother. God did not will this cancer on me - man and environment have done that. What God does create is smart people developing medicines and cures for these diseases and brilliant caring doctors to facilitate them. After holding my seizing child in my arms this past weekend, I am most certain of God's plan for me - and that is to love, protect and raise my children to become smart, strong, confident women who are not afraid to be who they are out in this world. Women who make a difference in other people's lives, and give back to their community. God did not intend to have this all taken away from me. However, do not think that I am just going to sit back and watch God fix it - I don't think he does that either. I must fight for it, and dig deeper within my soul to connect to him, and those around me. I am more ready for this fight than I thought I could be. To wrap up this thought, PJ and I read Jeremiah 29:11 tonight, and I do not reach for the bible on a regular basis. After reading this, it just may be time for another tattoo after treatment. ;-)

My other friend Jennifer, sent me some of the little scarf hats she wore when she was going through chemo. Since my hair is short now, I went ahead and tried one on and ya know, it doesn't look that bad! Madeline wore one and I wore then other - then of course she wanted to trade, but we wore them together all through dinner. I figure not only do I need to get used to this, my girls do too. It went over much better than I expected. Thank you Jennifer - and I really like them, I will probably want to get more from your friend who makes them - they are great.

Tomorrow I get to do more normal things like take Madeline to school, go to MOPS - then we are heading down to Phx for an overnight stay with my brother in law and his partner as we are going to check out a vehicle for us. It would be much more economical vehicle for us to take to treatments, so we're going to have a mechanic in Phx check it out and see what the deal is. If it makes sense for us to purchase, we'll do it. I have to say though, that a paint job is required for this car before we get behind the wheel. Why you ask? Well, remember that nothing normal happens to our family - everything that happens to us has the essence of 'quirk' attached to it. This car just happens to have had something extremely foul keyed into the trunk portion. Are you ready? It says 'F*(* You' on the back end. When I was told this, I literally said "what???? it says what?????" I figure, I could just add 'cancer' to it if I couldn't get the paint job done right away. Kidding. In any case, if the price is right and it all checks out - we'll get the curse car a new paint job and drive it back up here. Too funny. I couldn't make this sh*t up if I tried.

Night Night for now - Pray for a quiet night in the Mountcastle house.