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I have breast cancer and am a snappy dancer

Thursday, August 26, 2010

Cajun Chemo #3 - Pick It Up!

Well, treatment number three went down nice and smooth. Red as blood going in - so strange. I must say, these treatment experiences continue to astound and surprise me. I was so wanting to post last night but really just needed a long conversation on the phone w/ a friend to kind of, well, decompress if you will. Thank you friend.

PJ ended up going with me to treatment yesterday, which was good I guess. He basically worked the whole time, but at least he much was able to pay attention to how the whole NEW process works now. He was there in time to pray with me before the adrymiacin - and that is really the most important part. I don't know if I've explained it here before but the nurse sits right in front of you administering this chemo drug. It's a little invading - like I was used to them just hanging the bag of medicine, flipping the switch and off they would go - leaving me to my own meditation of sorts while the drug flowed through me. This way, the nurse is literally touching knees w/ me. Plus I have to eat ice chips throughout it to keep from developing mouth sores - another distraction. This time I just closed my eyes and prayed my little prayer, using the vision that Pastor Mary gave me - which helped immensely. Although I love the nurses, I wish they could just move back just a little. But then again, I am tall. Oy.

Well, even though I was scheduled for a 11pm appt I didn't get into even see my onc till after noon - then didn't start treatment till almost 1 - it was a very long day. However, the reason I was late was because there were 2 newly diagnosed women in front of me starting their treatment yesterday as well. I was immediately asked by the head nurse if I wouldn't mind speaking to them, which I agreed whole heartily immediately. I met a 30 year old woman with a 12 week old baby starting treatment yesterday. She and her husband were there together. I could so relate to the look on her face. She didn't know me, she had a million things racing through her brain, and she was lovely and cordial to me - she certainly didn't have to be. I recognized her expressions so well - the fear, the not knowing, the disbelief, the trying to still act like 'you' when 'you' is suddenly changing so quickly and drastically you can't even keep up with it mentally. People shoving papers in front of you requiring your signature and you have no idea what you are signing you just want to get on with it to just kill this shit so you can try to think about moving on with your life if you can. I felt a little silly at times talking to her - like I was saying such 'cliche' type things. But the one thing I told her, and that I told another woman I met having treatment for the first time, was that she had no idea how strong she really was. That we would never in a million years think we were strong enough to go through something like this but we are - and we do. I told her she would surprise herself. I don't know if I helped, I got a little emotional with her as well - which was, well, awkward. After speaking to her, I went back to where I was sitting and almost broke down. I looked back at her and I'm not exaggerating here, I could feel what she was feeling, literally, feel it. I was overwhelmed by it. I told PJ what I was feeling, and he says this is a gift - my ability to just tap into people. After much consideration, I think it is a gift as well. I think this is God using me to help other people. Suddenly yesterday, it no longer was about me getting my treatment. It was about how I could help someone else get through their first treatment. I could be a face of a young fighter in the midst of a sea of elderly cancer patients - which is a majority of what is in there. I don't know if I helped, I don't really feel like I did - but I know that I felt her fear - and wanted so badly to just take it away from her. It hurts me so much to see others in pain, I can feel others heartache, I am connected. I don't want to try to 'control' this - I'm smart enough to not stay there in that feeling or lose sleep over it or obsess about it - but I think this connection to others validates them - gives them comfort, understanding, acceptance. Isn't that what we all want? Shit I know I sure do. The fact that this young, beautiful woman has her first child and now has the whole experience tainted by this frickin cancer? Are you kidding me? This is outrageous! You mean to tell me they can duplicate a frickin sheep but can't cure fucking cancer? This doesn't make sense! For something that isn't contagious this certainly is feeling a whole lot like it is. Too many people - too many. Ok, stepping off the pedestal now - but only for a drink of water - I seem to lug this thing around with me to use whenever I feel the urge, which was tonight apparently.

Then I get sat w/ a gentleman who had no qualms about discussing anything and everything that was going on with himself medically which, and I think I can handle just about anything, was a bit TMI even for me. Let's put it this way, when he referred to himself as a 'cantaloupe hanging down' in reference with him going to the bathroom - I just picked up a book and started reading. So I went from one extreme to another.

In any case, we got our kids picked up and in my loving arms and back home but it was a long day. Gone from 7:30 am to 4pm. Long day. Then PJ ended up working till the wee hours of the morning and he is at a meeting tonight. Now, I don't know if it's the steroids I'm still on or what, but since I've been taking the supplements recommended to me, I have felt pretty good. Just still have the constipation issue going, which I'm trying to manage with laxatives and stool softeners right now (I keep having flashbacks of my nana drinking her Senekot every night - all I'm missing is the housecoat) but otherwise I'm feeling really good and seem to be tolerating this pretty well. Considering what others are going through this week, I think I'm doing just fine. I'm really looking forward to my surgery coming up on the 10th of Sept so I can get these mini basketballs removed from my chest and some nice squishy implants put in. I am just really focused right now on listening to my body, resting when I need to (or can w/ 2 small children) and taking good care of myself. I need to stay extra healthy for this surgery -need to heal perfectly so this can be over and done with. So ready to have this reconstruction over with. The end is in sight, thank you Jesus.

Well, speaking of resting, I'm off to do that right now. I thank God for everything I have in my life, the people and family around me - and those who hold my own cares above their own. This stupid cancer continues to give me such perspective. Dammit.

God Bless -

Tuesday, August 24, 2010

No - Even with a prosthetic you can still be an asshole.

So I'm driving home from picking up Madeline from school when this guy totally crosses the street against the light - which, coming from NY I'm not totally against at all - but you need to cross with purpose, not cross bringing traffic to a stop - which is what this guy did. I mutter something under my breath to make sure Madeline does not hear me when I realize this guy has a prosthetic leg. I suddenly stop and start to feel a little guilty - then come out with the line above. I still stand my this comment, and no, Madeline did not hear me.

So - my workouts provide me such quality enlightenment time, I'm so fortunate to have these moments. I realized that subconsciously we all kinda have what we think our life is going to be like already mapped out in our heads - all of us, don't we? I mean we all just assume we are going to grow old and die one day. But when you get played the cancer card, this kinda throws that subconscious assumption out the window - or at least challenges it. I find this interesting. Something you really never thought about - ever - is suddenly the thing you can't stop thinking about. I know, I don't dwell on it - I just find it an interesting shove into a different reality from the one you thought you existed in. I've also been thinking a lot about my envy towards others and I think I have really embraced something. I need to learn to love this body that God has given me. I need to suck it up, and start coveting my own physicalness - start really appreciating what I've been given and take extra special care of it. What good am I doing me by wasting all my energy looking at what I think other people have? It's not supposed to be easy, it takes work, but I can do this. I will work my ass off for myself. I need to. I can't just sit around and wait for whatever drugs they decide to pump into my body to work - I gotta do my part. I've started taking some supplements on the organic side (all approved by my onc) and now I'm really going to start looking at what I am eating. I just need to take an active part in my own healing here - no matter what the result. I can't just sit and wait for something to happen. I need to change too.

So I have treatment tomorrow and it looks like I'm going to be going by myself, which is really fine. I was kinda butt hurt about it at first, but now, I'm totally ready. It's kind of empowering actually. I still get to take Madeline to school, so at least I get to do that. I miss her so much now that she's in school. It's such a long day. I only get a couple hours with her after school now - but driving to and from school is my most favorite part so far, listening to her talk about school and everything she is learning and doing. I watch her head out to the playground in the mornings and she is just such a free spirit. She has no insecurity, nothing holding her back from anything. She'll go up to kids and just start chatting them up - or just run by herself, smiling and laughing - soooooo not like me. I think I was worried what other people thought of me in kindergarten, no joke. Not sure where that came from, but so glad Madeline doesn't have that - she is so awesome.

I feel like I've been given new eyes - I see my kids so clearly. They are so awesome - I can't believe they are mine sometimes, that God picked me - me - to be their mommy. My girls are so incredibly different from one another, but also so tied to each other and PJ and I at the same intensity. Our little family of four is so cozy, so comfy. We all just love being together, and I just can't soak them up enough. This past news of this cancer continuing to grow really got me for a spell, but I'm not going to let it get the best of me like that again. I'm going to give it my all, with the help of my family and friends. I'm not going to waste anymore time playing the what if game, or poor me. This is it - ya gotta just suck it up and soak it in. My daily devotional the other day spoke of letting her 'feelings' rule instead of her 'faith' rule. This rang so incredibly true to me - I'm such a 'feel' person anyway, constantly operating in 'feel' mode. What I need to do sometimes is turn off the feel and turn on the faith. What a difference.

God Bless -

Sunday, August 22, 2010

Dragon Breath

Well, I can honestly say I am knee deep into chemo side effects. I have the nausea, the head aches, the horrific constipation, and fatigue. Yuk. I'm trying, really trying to just plow on through it - well, listen to it, respond accordingly, and move on. Trying not to wallow in it - really. It would be so easy at this point to just go ' screw it ' and be a constant bitch fest - but who wants to hang around with that person? Right? Plus, hellloooo - I've got kids around me looking all joyful and kid like, I couldn't stay bitchy for too long I suppose. I've armed myself with some probiotics, some ginger tea, and some trusty Miralax - so we'll so how all these things pan out. I'm certainly not going to just 'suffer through it' like before - no way. I will find relief, hopefully in some sort of natural way cuz if you saw the amount of pills (although mostly vitamins) I take each morning, you would think I was like, frickin 80 or something.

The battle between my head and my heart continues - I would be lying if things like this didn't go through my mind every day at some point:

I always hear those stories 'she fought for so long and it finally got the best of her'.
I wonder if my kids will remember me.
I wonder if my husband will remarry.
My husband and I haven't had long enough together yet - we're just getting started on memory making!
Will I look like Helen did when I watched her pass away?
Am I just in denial?
What is everyone else thinking when they hear my story - they are saying how awful it is aren't they?
I don't want anyone to know anymore.
I am going to spend the day as if I am a completely normal person.
I wish I could remember what not knowing felt like, for just a day or two.
Why can't I be the person I am now but just without cancer?
Can I go on Nutri System with cancer?
I need to pray more.
I need to get into the Word more.
I just want to poop - like everyone else.

Well, most of these things I think about every day - give or take some others. These were just a few from today. It's funny, because I may have a fear of dying from this disease, but I don't think I actually believe that I will. Call it denial or not, I just don't see it happening. In my 'fears' I can, but in what is real in my soul I don't - I guess that's good.

I know that this treatment, when we find out it't working, I'll have to continue for a spell. But I hope that I will be able to give it up and give myself a break for six months or so, because the last year and a half have been a real bitch. I do feel more 'physically' able then I have in a awhile. The infusion treatments seem to affect me more internally and the pill form medications I've been on affected me physically. I love my workouts now and really need to keep them a part of my weekly routine - they help me both mentally and physically. I'm able to physically move around with much more ease as of late - which is actually worth quite a lot. Maybe that's why I wasn't supposed to be on the non-working medications, eh? Perhaps. There is a bigger picture, I know this - just soooo wish I was in on the planning of it - my need to know what's comin up, my 'Monica-ness' if you will. This part of my personality is the same part that makes me CRAZY when my kids pull all of their toys out in the room - I don't turn into Mommy Dearest or anything, but I have to walk away and not go on there till the end of the day or I will start tidying till the cows come home. I like things neat, tidy, planned out. Very UNLIKE life, eh? Figures I'd get cancer. Figures.

Well, I need to have some tea and hit the hay. We had a really great weekend this weekend but really threw our whole 'routine' into the wind, which always takes me some time to recover from. We had PJ's dad up for the weekend, and that kind of resulted in many late nights for my kids, which makes for even later nights for me. My girls just light up with their Grandpa is here, it is the sweetest thing. I had a lovely evening with my girls - we watched this wicked cool show on channel 8 about sea turtles, I watched Ginger say 'turtle' like 100 times which was just about the cutest thing I've ever seen (aside from the sound of her eating goldfish crackers) and read stories and prayed and they actually went right to sleep - I think they missed the routine too.

This evening I tuned into my love for my family like I haven't in a long time. They are my lifeline - quite literally. My family holds every sense of my being, and I thank God every day for the gift I have been given - them. Many people in this world rarely know the love I am experiencing for my husband, my children. What a precious gift. Soak it in. Have a great week -

God Bless

Thursday, August 19, 2010

Skip - skip - skip to my Lou. To my what?

My dear friend Jennifer came to treatment with me today, thank you God for good
friends. This morning was good - I can honestly say I have my sense of humor back - I did miss PJ by my side though. Hopefully we can try to get him to come with me for the second cycle. I'm working on that right now. I just want to try to give my kids as much normal routine as I can now - even though our routine has recently changed dramatically with kindergarten and all. And I guess I just want to keep Madeline's new schedule as close to normal as possible. Dropping Ginger here and there is far from normal for her - I like to keep her home with a sitter which she prefers, but that costs $$. These trips to Sedona cost $$ - gas and copays each time - we just have to fit it into our budget is all. Everything costs something these days, eh?

In any case, treatment went fine today. Had a real good conversation with my onc and my surgery is definitely on for Sept 10th. I'm excited to get this reconstruction done and over with. These expanders are kicking my ass so to speak. Just ready to be done with this part. My onc feels it's just fine to wedge this between treatment cycles, my blook work is and always has been, thankfully, good - and as long as it looks good next week we're a go. I will, however, sneak another treatment in before my surgery - cuz the week before would normally be my off week but that would mean I would go 2 weeks without treatment, which I don't want to do. Sooooooo, we'll go 4 weeks of treatment instead of 3, sneak in my surgery, then pick up my treatment the following week after my surgery. Yikes, right? I just really, really, really need to take extra good care of myself to get through this. It wicked important that I listen to my body and rest when I'm tired blah blah blah. Gotta do it - this coming from the woman who had it ingrained in her brain to just 'push through it' it is so hard for me to do this.

So it went fine, had my ice chips through the push and all went fine. Jennifer prayed the Armor of God with me which makes me feel so empowered, it is such a wonderful passage to cling to during treatment. I've also, ironically enough, started reading the book of Job - and I thought I had problems - wow. It's humbling, enlightening, and downright dramatic for what it's worth. Pretty good read, I recommend it.

I talked to my mom today and we shared our chemo stories of the day. How blessed am I to have my mom walking through this with me - we are doing this, independently together. She has become a friend to me through this process that I couldn't have even imagined. She knows, really knows, and in sharing together our thoughts and feelings, we find that we have very similar thoughts and feelings, and that is so validating for me. There is something to be said about the feeling you get when someone says 'me too'. So simple. So comforting. How blessed am I.

So I am going to go take a pill then curl up in bed. I feel like I'm getting some slight mouth sores tonight, and have this horrible taste in my mouth as well. Took a prilosec to help with the heartburn that I now remember being caused by the steroids, and my nose is red, also steroid side effect. I am off to the gym in the am then to prayers circle - my sweet Ginger in tow hanging on my hip. I love it.

I have to say that my head and my heart were on the same page for the most part today. I found myself shedding a tear after my prayer before the treatment drug was administered - but for the most part - my spirits are good, getting better, and my heart is more and more filled with peace. Just peace. I'm doing my best, my very best, and letting God do the rest. I do not sit idly by and watch, I am an active participant - I know nothing else. But anger and fear - I just don't wear them well - they aren't a good fit for me - and they aren't a good fit for my family either - so I choose to wear peace. Funny, it's just my size.

God Bless -

Tuesday, August 17, 2010

TUMS Popping Mama

Oh yea, that's me. My belly is churning kids - must be doing the chemo churn - since the Adrymiacin is red (red devil) PJ and I have decided to rename it the "Cajun Chemo". It sounds much better that way - spicy. Oh yea.

So today was a little more difficult than yesterday - was just a little fatigued today. I think this is mostly because my lovely little Ginger has regressed back to her newborn days. PJ and I decided that we woke up feeling like we had a newborn again but without all the newborn benefits (nice smell, cute squeaky noises, little blob that doesn't move around much). Ginger was up at 1, 2, 3 then 4 am. I'm not sure what's happening with her - she cries out yelling for MOM or DAD - then we get in there and there's just no consoling her. She has had some pretty cute moments w/ me though since we've been spending time together just she and I lately. She'll grab my face and just plant these huge kisses on me. So frickin awesome. She is a brut but she is such a love at the same time. What a gift.

Met my friend today at the mall and let Ginger run in the play area. It felt good to just confess some stuff out loud to my friend. I am so blessed to have such good friends in my life - I can't imagine having to go through this anywhere else. I've never had friends like the ones I have now ever - ever in my life before. This is not by mistake.

So I get lots of advice - LOTS of advice on how to handle this cancer thing - from positive thinking, to visualization, to foods to eat, to music to listen to, everything you can think of. I appreciate it, I really do, but sometimes I just feel like screaming 'Easy for you to say!!! You don't have any idea the thoughts that run through my mind on a daily basis so shut the hell up if you wouldn't mind!!!!" I wish I could make a list of all the things that go through my mind each day - it would fill a large pinata at least. That's what I wish I could shut off myself lately - just shut it off. That's why I take things to help me sleep at night - so I can just stop thinking. Good? Bad? No frickin idea - just know it works and I'm usually able to get sleep this way - barring no child interruptions. Which, to be honest, can make for long days the next day, but there is something secretly cool about a little person calling YOUR name through the monitor at night - you are the only one they want and you are the only one who can comfort them. Pretty cool. There is nothing like being the parent to YOUR kid - knowing YOUR kid like no other. Being a mom is the best thing I've ever experienced - that, plus one of those Dairy Queen Blizzards swirled with Girl Scout Tag a Longs. Oy.

I have treatment on Thurs, and so does my mother in Phx. How ironic is this - I'm pissed I can't go with her. Luckily, mine is in the am, so I can try to have a normal day afterwards. My friend is going with me - it breaks my heart to think of my mom going by herself. No one should have to do this alone. Ever. But a lot of people do - I see it each time I'm in Sedona.

I'm going to try to get my head out of myself and onto others. I feel like I've been wallowing in this sea of self pity and I need to pull my ass out of it. I will try to pace myself better now and save my strength for me to get well and my family, but I need to focus my attention on others, and loving others. That is what we are called to do - to be to each other - and the more I'm drowning myself in my own shit, the more depressed I get, the more self involved I become. A clear sign that is not what is meant to be - so I will try my hardest to fall in line with what we are supposed to be to each other in this life. Need a whole lotta praying to get there.

God Bless -

Monday, August 16, 2010

girl interrupted

That is so how I have felt lately. Like my life was going along like everyone else's then this huge, major interruption that continues to interrupt interrupt interrupt. I try to keep myself from looking at others and not be so overwhelmingly jealous, but I am. So jealous that they have these healthy bodies with no breast cancer in them and I don't - I know no good comes from this kind of thinking, I know this - but it is just so hard to try to keep myself from thinking these things.

Today felt good to get into our new kindergarten routine without having to run around town for this test or that or run to Sedona - it was lovely to just be a mom today and not so much a cancer patient. My side effects are minimal right now, just slight waves of nausea, and yes, the wonderful chemo constipation is back in full force - lovely. The anti-nausea medication seems to cause this along with the chemo itself - double whammy. So that just feels oh so special. Other than that - I'm peeing a lot and that is about it. And tired - I feel like I could always use a nap - but doesn't everyone?

With Madeline in school it's seeming to not work out where PJ can come to treatment with me - which I'm starting to have mixed feelings about. I never realized what a strong force we were together when we did this before, and now, to be doing it on my own feels strange - empty. It feels like he and I are on separate pages this time, not the 'force to be reconed with' as before. I know he's angry - really angry that it's back. So am I. But I have to trust the journey and my doctors and my God that this is all happening for a reason, one that may never be revealed to me and I am trying to remember to approach it with a positive attitude and keep focusing on good health for me no matter what. Thankfully I have not ever felt 'sick' with this - with the excpetion of how the chemo makes me feel, I've always been real strong and I intend to keep it that way. It just sucks more now because I feel like I'm the only one keeping this mind set. Even when my onc told me it was getting 'worse' as she called it last week, my initial reaction was 'what? are you kidding? arg!' then I totally was like 'so what's next, where do we go from here?' I didn't get all pissed off, I didn't dwell on it, I was ready to immediately move into the next phase. I trust my God to be with me through this and I know, deep in my heart I will be fine. I realized today as I drove back home with my 2 sleeping children in the back seat that lately, I've also been spending WAY too much time playing the 'what if' game - easy to do, yes, but such a waste of the 'now'. I'm missing the 'right now' while I sit and stew over the 'what if'. I'm one of those 'planner people' so I like things planned out, organized and tidy. Cancer is anything but tidy. I used to be better at enjoying the NOW and need to get back into that mindset. Again, before when this was fresher news, I had lots of people reminding me of this, now, well, it's just harder to instigate this all myself - but that is where I am now. This is a way of life right now - when it was 'breaking news' it was on lots of people's radar, now it's mostly on mine - which is totally fine and makes perfect sense. There have been many times as of late that I have to do my own 'self check'. It's almost like I still go through the same thinking process and need to talk through it each time, but I can tell that my hubby is just worn out on the conversations. Makes perfect sense, I mean he's been living it right along with me - I can't blame him for this. I can't imagine how exhausted and drained he must be with this. It's funny, I think I'm just constantly looking for someone to tell me everything is going to be ok - lately I am only able to get this through prayer and meditation. No one is saying anything anymore.

Ya know what though? I was thinking this morning while I was working out that I bet if this had not happened to me, I would be bitching about something insignificant - and bitching pretty heartily I would imagine. I used to be VERY good at that - funny how cancer has changed me. I look back now and see how petty, silly and dramatic I was with certain things. It's a little embarrassing actually and a shame it took cancer to wake me up and give me a shot of real perspective. Ironically I am thankful for this - I find I'm a whole hell of a lot more pleasant to be around now. I also am so in tune with others now it's scary. I can look at someone and actually feel what they are feeling. It is astounding. I guess I was always like this, but cancer just tuned it in. Centered it. I would assume I am supposed to use this, how I'm not real sure yet. We'll see.

I get to take my little Madeline to school tomorrow, watch her walk into class with her Buzz Lightyear backpack, and wave goodbye to me for the day, while holding my little Ginger's 2 year old hand in mine. I can't tell you what a gift this is. I pray to God that I will continue to receive this gift throughout the next 20 years, but then kick myself and remember that I'm pretty damned lucky to have it today.

God Bless -

Saturday, August 14, 2010

Memories of the 'Flush'

I had forgotten about the red flushing of my face from the steroid drip - oh how pleasant. Or maybe it's just my hubby making me blush as he tends to do on occasion. In any case, the pre-med steroid drip is in full force. Here's the rundown of what went down on Friday - I would have used 'Mr Toads Wild Ride' as my post title, but I think I have used that one before -

The deal on Fri initially was, PJ would take Madeline to school then stay in town and pick her up. I would wake up a little later w/ Ginger and she and I would go to prayer circle, then my friend Jennifer would take her for the afternoon while I go and pick up my step mother, Nancy, to accompany me to treatment. Then PJ would pick up Madeline, then Ginger, then we would meet at home in the late afternoon. Sounds like a plan right? Well, it didn't go exactly as planned. PJ left with Madeline, and I am enjoying a leisurely morning not having to leave an hour later than I usually do when I notice, around 8:10am than Madeline has left her show and tell on the kitchen table. After a time of trying to figure out exactly how this has happened as I specifically remember placing it in her back pack, I yell to Ginger that we are leaving NOW and she pops up ready to go (what a trooper). As I'm frantically trying to get us rushed and ready to go (school starts at 8:30 and it's a good 1/2 drive into town) my cell phone rings and it's my onc saying the echo I had done the day before didn't give them the information that they needed for me to receive my treatment. She actually went into detail about what she was looking for in this test, but she could have been speaking Greek - so I asked her to dumb it down for me - they need to know the pace of my blood as it pumps through my heart so they have a starting point to measure - make sure it's pumping at a healthy level - apparently the echo didn't show that. She says she is going to call the cardiologist and call me back. Ok. Hmmmm. So I pack up Ginger and away we go to the school when my phone rings again, it's my onc. She says I need you to get to the hospital right now to do a MUGA scan - they're waiting for you. Um, ok? Hmmmm I think - how the hell am I going to do this. I thought PJ could meet me and get Ginger but then remembered he had a meeting in town at 8:30 that was the whole reason he was going in in the first place - so I decided to call Jennifer and see if she was up for my little Ginger a little earlier than originally expected. She was thank you GOD - I dropped off the show and tell, then Jennifer met me at the hospital and took Ginger for me and I went in for my scan. Not realizing now involved this was - they had to take some blood, put some nuclear stuff in it, mix it up a bit (probably more technical then like a salad spinner or something I would imagine) then inject it back into me, then take some xrays of my chest - pretty cool, just didn't know it was this involved. So I don't show up to prayer time till 10:40 (supposed to be at 10) and my appt in sedona is at 1:15 which I don't really know yet if I can even go since they technically still don't have the heart info they need to give me this medicine. So my prayer warriors show up and wait for me, we pray, cry and pray again, then I head out to go pick up Nancy. On the way I call my onc who says YAY! the results are in and I'm good to go. Apparently my blood pumps beautifully, at least something is, eh? So off I go to get Nancy - pick her up and we're off.

I was nervous, I have to admit. Pissed too - that I was back in these frickin recliners to do this again. Fiona was there and I asked her if she wouldn't mind giving me my treatment as I was a bit nervous. She is such a doll. Love her. She did. The steroid pre-med did make me a bit brain fuzzy as it started, but then fine. That took about 20 minutes - then came the huge syringe with, yep, bright red liquid in it. Freaky. Fiona brought me some ice chips as this tends to help with mouth sores as the chemo is injected, so I say and she had me talking about my kids the whole time, ice chips in my mouth and all. She knew exactly what she was doing. Before I knew it, the push was done and I was free to go. She said that I may pee red for a few times that day - which I did. And I may get nauseous - which I actually did on my way home. I thought about pulling over, but we made it to Cottonwood and got a smoothie and that really helped. (thank you Jack In The Box) Actually, getting nauseous now, need to take a nausea pill, be right back. There much better. That and cold drinks seem to help a lot. Who knew.

I have moments of being OK with this, and then dark moments. I feel comfortable with this medicine, and feel comfortable with the decision to go on this medicine. I spoke w/ my onc and she felt this would make a significant different. It reads and feels like a chemo drug - hair thinning or loss will occur - since my dose is lower than the usual push, they don't think I'll lose my hair - but I've been hearing yes you will and no you won't - I'm not sure what will happen. Whatever happens will happen in 2-3 weeks, so we'll see. I think what I was on before (the pills) were more of a 'gentle chemo' and I apparently need the hard stuff. I asked her about Taxol, and she said 'ya know Dina, we've got it right here, right in our back pocket - we'll use it if we have to' and I'm just fine with that. I feel like I'm on a smaller dose of that now to be honest, it's a very familiar feeling this drug. I'm just anxious to see how I feel so I can determine when I can schedule these treatments. I want so badly to keep my family in some sort of routine - I don't want to not be able to be a wife, mother, mommy, friend. I know though, I know how important me taking care of myself is. I don't think I really got that before. Really. I think I was just trying to fit cancer treatment into my already set schedule, and that really wasn't working. My friend said to me recently that I need to allow myself the time to rest, and also to meditate on kicking this cancer's ass. I hadn't thought about allowing myself time to get my mind in line with my heart in this battle. They go against each other quite a bit ya know, fight each other. Our brains do us some damage, and I need to allow myself time to get my brain in order. That means lighting up my schedule, changing my schedule. I'm starting to do this now. She's right - I need to make time to get my brain in fighting mode. So important.

Well, I'm off to cuddle with my hubby on the couch. We had family picnic night tonight on the floor in our family room. Which basically means we decided to eat our dinner on the floor and watch a movie then have pop corn. The girls were in hog heaven - so cute. Madeline said to me tonight "what does your cancer shirt say again mom? Oh yea, 'mmm chemo - stupid cancer!'" This is the only time I allow her to say 'stupid' as that is not a permitable word in our house. She rocks.

God Bless-

Thursday, August 12, 2010

Third Time's a Charm???

Well, results from CT scan are showing that the meds I was on, Xeloda and Avastin are not working. My main tumor is now at approx 3 cm and it may even look like tiny minuscule little baby ones are now forming on my liver. Great. I was a bit taken back by this, I was really hoping for at least no movement.

The plan now is to start me on a drug called Adriamycin. This has the nickname of 'the red devil' to those cancer patients who have had to endure it. It's a chemo drug, and it's a 'push' meaning they give me my premeds via drip intravenous then they administer the chemo through a syringe, slowly, directly into me. (they utilize my port, it's just a syringe given by a nurse rather than a bag drip) I will be getting this once a week for three weeks then have a week off. Side effects aren't quie as bad as the Taxol, and I'll be getting a lower dose than normal of this so hopefully no hair loss. If this works, great, if not, then I will be eligible to start on a clinical trial. Thing is, I have to have been on 3 different drugs to be a candidate for this trial, and those three are Xeloda, Taxol and Adriamycin. Weird thing is, well, there have been MANY weird things unfold within the last 24 hours to be honest, but THIS weird thing is that I'm not sure if I'm being put on this drug just to get to the trial or if they actually think this drug is going to work. I mean, time is of the essence here as this thing is still growing inside me - the bigger it gets the more medicine I'll need to kill it. That's what my 'patient logic' is telling me. Then I have my husband saying he thinks we should just go back to the Taxol - we know that worked. Yes, I would lose my hair with it - but I would also have all those other little nuggets of shitness that accompanies it as well - mouth sores, hemorrhoids, the most unbearable constipation I've ever endured, no eyelashes, no eyebrows, and in bed for 2 days a week. Gee - wonder why I want to try as many other things first before I go back to this. And would this be for life? I know it's been presented to me as such, but I don't think I would do it that way. I'd like to find something that works, have it blow this cancer out of the water for six months then stop and see what happens. I don't know - I think I just need to take this one day at a time and do what I hear God telling me to do - funny thing is, I can't hear Him to save my life right now. Literally. Pastor Mary says its like the Elijiah story - where he is enduring the winds trying to hear God, the earthquakes, the fires - and not until it is all still and quiet does he hear the Lord. I must be in the storm. Dead center.

So here I am by myself at this appointment getting this news and it seems like I'm the only one with hope. My onc seemed all kinda hopeless about it, my husband is just pissed, and here I sit. Hooked up to my calcium treatment while we see if we can get me scheduled for an echo cardiogram quickly as they need this to start me on the new drug, which I had done today and I'm scheduled to go have this new drug tomorrow. Bing Bang Boom. Guess it's better that it happens this fast.

My brain went to a dark place last night. I started just feeling so bad - so bad that when I share this information it makes everyone so sad. They get so upset - namely my husband - I look at him and just love him so much, it kills me to see him hurting as I tell him the news. He deserves so much more out of this life than this, the dark place tells me that he deserves a healthy wife and a healthy life with which to raise these kids - that I should just go away and try to get better alone, to not subject anyone else to this - to handle it all by myself. Told you this place was dark, right? So I cry last night, I get on the floor, on my knees, my face to the floor and I scream to the Lord, why? Why me? Why haven't you healed me like you say you will? I want to live - I want my life - my husband needs me, my children need me, my parents need me - I beg you to heal me. I beg you for my life.

Madeline caught me crying last night - she asked me why I was crying and I told her quite simply that mommy's cancer was still growing and it made me scared and sad. She went and got me her blanket and 2 stuffed animals and said I could sleep with them. And I could sleep with them for ALL nights, not just one. Last night I did - and it helped. So did the percocet, but so did her blanket and things. My angel, sent from heaven, comforts me with her grace. I am blessed.

I will fight this, with every inch of my being, every piece of my soul - I just need to hear Him, cuz right now I feel like his voice is just being drowned out by a bunch of BS. Gotta clear out the BS and get to healing. I've also decided to clean my plate a bit - I have to let go of some of the volunteer work I've been doing and just focus my energy on getting well. The energy I do have I need to give to my family. They deserve that.

Didn't mean to be so dark this evening, but it feels much better to get this crap out of my head and onto this computer screen. I'll write more after tomorrow, gotta share this new medication experience - maybe third time's a charm. Let's pray for that.

God Bless -

Dina

Monday, August 9, 2010

My Favorite Part Is Recess

Madeline started kindergarten today. My life has been a whirlwind up until this point, and I need to post more. So now that this phase of our lives has begun, I will make it more of a priority. I need to.

Anyway, she did GREAT! We all took her and dropped her off - and I went back to her like 3 times to say goodbye - I could tell if she knew how to roll her eyes at me (thankfully she doesn't know this physical sarcasm yet) she would have. She wanted to get on with her new school, without me hanging around. I looked at her teacher and said "I guess I need to just leave then, don't I?" To which she half smiled at me with a simple "yes". Hmmm. Off I went. Part of me wanted to just wait outside the gates all day like a stalker to make sure I was in arms length of her if she needed anything. Madeline got into the school I had hoped she would get into - a school I dreamed she would get into, and I feel so blessed. We were in the last category on the waiting list - 3rd in line in the 4th category AND considered an early entrant - and still got it. If that ain't God, I don't know what is. She is so happy. It felt so awesome to pick her up today, to have her eyes meet mine, tug her teachers hand and say "My Mom is here!!!" then run towards me to give me a hug. The most awesome feeling in the world. When I asked her what her favorite part of school was, she said, without missing a beat, "Recess!" She gets it already. So awesome. It was neat to spend some time w/ Ginger one on one today too - and we will eventually get into our new 'groove' it will just take a little while. I kinda felt like a fish outta water today. New everything. We'll fall into it, no worries.

So I go to all my dr appts this week - I see Dr Mo tomorrow afternoon and I think I'm going to just go ahead and schedule my surgery when I see him. This may be putting the cart before the horse type of thing, since I have my CT scan on Wed afternoon AND treatment that same day, but I really want to just finish this reconstruction thing. My tits feel like unripened melons, they just sit there, big and not moving anywhere, and I really want the implants in. I've been told it's like night and day difference between the two - which I would really like to experience. These are full to capacity and I'm ready to trade them in for the better softer thingys. Plus, it will be a year in Oct since my mastectomy. Isn't that crazy? A year! I miss 'stretching'. I can't do it - haven't been able to since this whole thing started. Wait, I think I kinda tried when they took the expanders out after the infection, but that was about it. It's pretty difficult to sleep too - I'm a side sleeper and since these expanders don't 'move with you' it makes it extremely uncomfortable to get in a good sleeping position. I'm told the implants will be better. So, I'm going to go ahead and if Dr Mo thinks I look OK tomorrow, book the surgery. Most likely for the first part of Sept. Now, I say that because I now have to take the Avastin thing into consideration. Remember the FDA was going to determine whether or not it was going to continue to recommend this drug for breast cancer patients? Seems the real truth is that it is just wicked expensive to manufacture that's why they want to pull it. We hope that won't effect patients already taking this medication. So I want to go off it (need to for 3 weeks prior to any surgery) then get back on it before the FDA releases its decision which is going to be Sept 19. Like I didn't have enough to fight already, right? It's all about the almighty dollar - bastards.

I'm feeling pretty good - my feet have like 1 really bad day a week the week I'm on the Xeloda, and I get tired faster when I'm on them, but overall I've been doing pretty good. I suppose I am adjusting subconsciously to my new normal. I was reminded of this when I was at the MOPS convention this past weekend in Orlando, which was awesome by the way. Little things I noticed though - being with a bunch of moms who are not fighting breast cancer, just how much I'm not 'normal' anymore - just get around a bunch of normal people and I was able to see how I'm not like that anymore. It's funny, I want so badly to be that again, it was kinda fun to pretend like I was - but then I would be painfully reminded I wasn't, and I'll be honest, I got a little resentful at times. Not outwardly, but inside I did have these moments. I miss climbing into bed without any sort of pain or uncomfortableness - that was a huge thing I noticed. I miss moving around in general at an ease. I didn't realize now just moving is painful to me sometimes. So frustrating. But I think what I enjoyed the most, is everyone treated me like I was just Dina - not Dina with cancer, and that was the best. I am so blessed to have these women in my life, and be blessed with this organization and humbled to lead it.

I finished the Dodie Osteen book and have to say my thinking has completely shifted because of it. She spoke my language, stating feelings she had during her cancer experience that completely paralleled mine and then quote scripture that showed how God calls for us to be healed. There was no question about it - and I never knew this or knew the scripture well enough to know this. It has completely changed my way of thinking about the bible and what God says about living our lives. He wants us to live. I never got that before and seriously, this is life changing for me. I have found myself repeating some of the verses she quoted in her book as a wonderful deterrent for the 'bad, negative' thoughts that come into my head. It really works. I am so amazed at how I have continued to grow spiritually through this experience. It's like things continue to be revealed to me through this journey. Something else I realized was that I have been continually giving up my fear, my anxiety, all these 'feelings' over to God - which is good, that's what we're supposed to do - but it never occurred to me to give cancer itself over to Him. Wow. That would be huge right? Well, I did it - I need to remind myself of it from time to time, but I did it and it really feels great. I am slowly achieving this balance of listening to God guide me through this life with the decisions that I make, then sitting back and letting things happen the way they are supposed to. It's so powerful and amazing - to be an active partner in your life aligned with God. Amazing.

So - because I'm sure you all are curious - the airport alarms did NOT go off because of my expanders, in fact, nothing went off. I was a little disappointed to be honest - I was hoping to get 'wanded' or something. But it was completely uneventful. Again, I was just another human being being pushed through the security line at the airport. I was someone who just blended into the crowd. Aaaahhh.

Have to go make Madeline's lunch for tomorrow. Her little Buzz Lightyear lunch box - so frickin cute. I'm the proud mama of a kindergartner - I can't believe it. How blessed am I - to watch her come home today and Ginger run up to her saying "Madeline!" then give her a hug and a kiss. I have the best job on the planet.

God Bless -