Don't worry - you won't catch my chemo

Well, first treatment is done and overwith. I am no longer in the pain I was in before treatment, which is sooooo good. Considering the doc said I would have to wait 3-5 days after my first treatment for pain relief and I felt it the next morning, I consider this divine intervention, and give Jesus all the praise - thank you .

Friday was interesting - I was able to meet w/ my onc then the mind body spirit guy and he and PJ and I had a great talk. Really helped me. He says things to me that are just to the point, no 'making nice' which is a sweet relief. Reminded me to just let things be, and focus on healing, and allowing the treatments to do their thing. He said a lot more, reminding me to put me first, something I needed reminded to do. Told me not to fall into the typical 'breast cancer super mom' stereotype that he sees over and over again. Relieved me from feeling like I have to take care of everybody in my family - and we touched on some mother issues I need to spend some time in prayer about. Some deep shit, but good - all good. Then my onc walks in and says he has spoken in the quadrasphere guy and he wants to go ahead with that once I get on the Halivan routine - what??? My eyes felt like they popped out. I can't imagine doing both of these treatments simultaneously - but we will see. Right now I'm just focusing on this chemo treatment. Infusion was good I guess - and these new pumps give me all my premeds at once - so cool!!! I don't have to wait for one after the other - I get the steriod, the anti nausea med and the benedryl all at the same time - then my actual chemo drug is a push that takes 2-3 minutes. So they watched me for a bit, then I just realized that if they let me I'd just sleep in that chair for as long as they'd let me, I'd snooze myself to sleep. So I got my ass up and out we went. Groggy, but fine. I was pretty much fine until last night, that's when the steroid flush came upon me, oh how reminded I am now of all this side effect fun! Yes, I had forgotten actually that I was supposed to have a mommy & Madeline sleepover last night where we just got a hotel room locally and hung out. So we do this even though I'm starting to feel the side effects of my treatment (red face, nothing tastes right) and Madeline has the stomach bug that Ginger had last week - yay!!! But we had fun nontheless. Luckily she is old enough now to take some of these over the counter meds to find relief quickly for her - bless her heart. But we went swimming, hot tubbing, burnt popcorn in the room, ordered room service - we had a blast. Then off to church this morning to meet the rest of the family. That's where my encounter happened. I'm sure it was just a TMI moment, but it struck me as funny. See, I have found lately that when I tell my story - and I mean my whole story, it makes people a little, ok a LOT uncomfortable. It's like - tragedy overload for some people - and I can feel myself as I tell it, I can hear myself thinking 'ok, don't get too sucked in here, cuz there's more coming' it's like I almost have to lessen the reality of my own story to save the person I'm telling the pain of hearing it - does that make sense? It's ridiculous!

So, I had mentioned my meeting with one of the new pastors at my church sometime back, where I just wanted some spiritual guidance I guess, had hit a wall and wanted to talk it through - well, this was one of those moments. So, I haven't been back since, but I do get the longer hand shake and hug from him when we meet at church, and that is good and quite comforting to me. Well, this morning, I guess I felt like I had to share my divine intervention - I mean this pain gone this is a HUGE deal to me - I've been in pain where it hurt so bad to sneeze or yawn, I looked like I was giving birth each time either one of these things happened, now, I'm learning how to do these things normally again - I thought this was monumental. So when I get approached for the hug I mention that I started chemo onFriday which ilicited a quick stink face and a couple steps back. Hmm - ok. Then I try to make it ok by saying 'but my pain was gone instantly it was totally Jesus!' and I get 'I just wanted you to know I was praying for you' and off he went lickity split. Now, I only bring this exchange up because I find it ironic - I'm not upset by this,not in the least, I'm fine. I just think it's funny that here I go trying to appease others 'uncomfortableness' with my situation, yet again. I hate that this disease is all some people see now when they see me. I wish they saw me - but they don't. That's the part that I wanted to talk about. And it's not just this pastor, it's people who just don't know me. I liked it better when people didn't know me they really knew nothing about me - now - they all seem to know I have cancer - and that's all they know about me. So I get the pity look, or the shoulder touch, or the smile with the head tilt. Sucks. Because I think I have something to learn from certain people, and they just can't get past the cancer part. Sucks again.

So I'm drinking water with frozen fruit in it (tastes really good actually) and that's really about it - everything else tastes awful. Back I go to eating all natural which I was doing OK before, but now that I can't taste anything with preservatives, I'm going to go all organic and start a plant, fruit and fish based diet. Some chicken, but no meat - little dairy - that's it. My friend is going to show me how to shop like this this week - very excited. Ready for some new fresh ideas - ya only know what ya know - gotta change up what I know - ya know?

So I'm asking for positive prayers, sending out the bad thoughts that creep into my brain with a big FU to Satan and then the awesome catch phrase Pastor Dan gave me this morning, God's Got my Back. That has worked wonders so far today. Thank You!!!

Need to watch my Sunday eve zombie show with my hubby so I bid u farewell. Glad to have nothing to do tomorrow. Need one more day of rest, gotta get into a groove here. Not there yet. Clearly.

I read the following passage today for the first time ever and it just filled me with such - life? Not sure how else to explain it. It's Habakkuk 3:17-19. I know - I never even LOOKED and this book in the Bible - anyway, I'll just share the last line, but please check this out - it is amazing:

' The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.'

This visual is just so comforting to me. I love it. Check in tomorrow - God Bless.

Dina

All Aboard The Chemo Train...........

Last night and all day today, I prayed for peace. I prayed for peace to wash over me, no matter what the news turned out to be today. Did I pray for healing? Absolutely, in fact, I've been quite adamant about praying for healing as of late. And I will not back down. I did get what I prayed for today however, I got peace. Complete peace when faced with this new news. This new path of which I am about to head down. It seems that yes, cancer is indeed what has caused the damage to my shoulder bone. In fact, I have reactivated bone mets (short for metastasis) in the places where the old ones were, and new ones. To be specific, I have bone mets on both shoulders, both legs, my spine and my ribs. They believe the pain I have been experiencing on my right side is indeed that, the bone met on that side. Once I received this news my doc has me whisked off to imaging again to have all my bones xrayed to make sure they weren't further damaged like my shoulder was - at risk for breaking. Blessedly, they are not - they are in good shape. It's like a breast cancer tumor is just sitting there on the bone, in the places I've mentioned. Needless to say, PJ and I were quite taken aback - I was prepared for the met on my shoulder, that just made logical sense to me, but not all the others. I also am a little annoyed that I haven't had a PET scan for over a year, we were so focused on the liver, we kind of let that slip I guess, but, there's nothing to do about this now - so let's move forward.

The test also showed conflicting information regarding my liver. In fact, my doc said that 2 radiologists were 'arguing' over my scan. ?? It shows the tumor areas as smaller than before, but reading hotter for cancer cells. This is completely contradictory of one another. (of course it is! it's me!) so I am settling for no change. AND to make things more confusing, my blood work again is perfect, and my tumor markers are DOWN. What the chicken?

We are putting the kabosh on quadrasphere - which, I have to say, I am thanking the Lord above. I am so happy to not have to do that again, I was ironically telling PJ that I would almost welcome that chemo chair before doing quadrasphere again - well, be careful what you wish for. Yes, I will be starting a new chemo treatment plan on Friday. It's a new drug, recently approved by the FDA by the name of Halaven. It is a 21 day cycle - I have treatment day 1 then day 8 then take a week off. Back to the chemo chair. Side effects are minimal this time, thank God. And this is my first experience at CTCA for chemo infusion - who are much more proactive with side effects and such rather than reactive - in fact, my care manager and I have already begun to discuss how to start handling some of the side effects now.

Now that the facts are out of the way, I can get to the feelings part. I am not afraid of this news at all. I have no idea why - wait - yes I do - I got what I prayed for, I got peace. I know this is manageable - bone mets are way easier to tend to then the liver thing - and knowing that I'm starting a chemo infusion with minimal side effects that will treat both? I'm oddly excited to get started. I know - crazy right? This new drug is made from a sea sponge - how frickin cool is that? Am I pissed I have to plant my ass back in that chemo chair? Absolutely - pissed and horribly inconvenienced - but - I am supposed to be relieved of this pain that I have been feeling for the better part of 3 months now, within 3 days of my first treatment. The pain I have been experiencing has been sending me into a dark place thought wise - a place I do visit on occasion, which is normal, but I have spent the better part of the past 3 months in this space, and have been keeping it entirely to myself. On the ride down to CTCA, I finally and quite spontaneously opened up to PJ about this, I explained to him that I was usually pretty good about talking and praying myself through these times, but lately I just couldn't do it - and I don't want to be in this dark place. I don't want to think about myself dying, of never seeing my kids grow up, of not being able to take care of my family - and this has always been shit I've thought of, but when you are in pain, it makes it much more vivid and real and scary. Long story short - I asked for help. From him, and then today, I asked for help from CTCA. I'm not used to doing this, and what I noticed myself doing was me showing up for these CTCA appts and treating them just like something on my To Do list. Putting the tough girls face on, smiling, joking, like I always do. Never have I thought of them as the place for me to let my guard down and just open up completely. Shame on me. This was difficult, and I'm not ashamed in the least to say I'll be seeing their psychologist here pretty soon. Looking forward to getting some help from someone to help me put this in perspective and hopefully gaining some tools to help me climb out of these dark moments. And, I realized it's not fair to my husband to keep this to myself either - he wants to help me, and he can't if I don't share what I'm thinking. So this was extremely powerful for me this visit - and I feel very positive about it.

I don't know how long I have, 10 min, 10 days, 10 months, 10 years, 40 years - but I don't want to spend whatever time that is being scared or fearful - I want it to be full of life, and love, and family, and friends, and giving and helping others. No time for bullshit or other peoples bullshit or drama, life is just way too short. I want to surround myself with people who want these same things out of life, learn from them, and hopefully be an example to those who haven't quite got it yet. To be completely dorky and quote Mandisa, 'I want the Truth that I believe to be the definition of me'.

So I start treatment on Friday - so prayers please that I react ok to this new drug, that it does what it is supposed to do, and also prayers that PJ's job will work with us on allowing him to take me to treatments. It is so much to ask I know, but he is the most trust worthy guy, I hope they know that and will allow him to make it up elsewhere - because he will.

I want so badly to keep our lives on course, as much as I can. I want to keep our plans to go to NY for Thanksgiving, to have a sleepover with Madeline this weekend, to give Ginger the bday party with a princess that she wants, to try to take a weekend away with just PJ and I, to see PJ's cousins and their kids over Easter - all of it - life doesn't stop because of cancer, life doesn't stop because of chemo. Everything keeps going - and don't want to miss any of it. Please, Lord, give me the strength, the healing, to power to go through this and keep going as a wife, a mother, a woman of God, and sister in Christ. Please, give me the strength.

God Bless -

Dina

Dina's Shoulder - The Newest Carnival Attraction

So, I finally got my appt today at CTCA. I had been waiting and waiting and waiting for my interventional radiologist to call me back, which, he never did. In retrospect, this is not entirely a bad thing. Because I have a new interventional radiologist now, who is awesome and treats me like a person. Anyway, saw him today and he gave me an entirely different interpretation of my last CT scan. Get OUT - right? So, he says he can't really be sure that there is new growth on the right side - can you believe it? He described to me what cancer looks like on a CT scan and this didn't really look like that. He didn't really know what it was - vascular irritation was a possibility. So he recommend I have a PET scan so we can really see what we're dealing with, then either schedule another quadrasphere if it is, or take some time off if it's not. And as I still am dealing with so much pain when I breathe in on my right side, he did a full ultra sound on my abdomen, all of which came out fine. My bloodwork came back fine, my liver function is normal, my white and red blood cells are perfect, and my tumor markers were even down. Isn't that crazy! So we decide that I will start taking Alieve for the pain instead of popping all these Advil, see if that helps, schedule the PET scan for the first of March then see if we need a quadrasphere or not. Sounds awesome right? Right, it is. Except here's where everything went in a totally different direction today.

My shoulder has been hurting, I think I've mentioned this here before. So he does this physical exam which generates some pain, then he decides to do an ultra sound himself on it, just to take a peek. Nothing. We agree to try to strengthen it up by doing some stretching at home, to see if that improves. Ok.

Off I go to my oncologist appt - check up time. He reviews everything that I just went through with the interventional radiologist and upon his physical exam of me - he notes my pain when I breathe in like before, and my shoulder pain. He says he wants an xray of my chest and my shoulder. Just like that - they send me back down to imaging and there I immediately have my xrays - so frickin cool that this happens this fast - and the results are given within like, 10-15 min, no lie. He reports to me that my chest is clear - thank you Jesus. My shoulder however, has a hole in it. Yea, you read that right - my shoulder bone as a hole in it - about the size of a nickel. I respond with 'what?!?' and he says "yep". I look at him and say 'well, it's cancer isn't it? what else could do that?" and he says he doesn't know. That he's never seen it in this particular bone before, so that part just doesn't make sense to him. I just continually seem to baffle everyone. He and PJ then begin to chat that perhaps this is degenerative, or maybe I've always had this. Nobody knows. Point is, he doesn't want to wait to find out - so now I have a PET scan scheduled for Monday morning. Ugh.

AND - to boot, I accidentally OD'd on Vit D today - did you know you could do this? Well, I did with this new supplement I've been taking - and my naturpath informs me that the dose I was taking is at toxic levels. Well, I certainly felt toxic - it was awful. Better now though - thank God.

So I have to admit, I was freaked out at this news. Freaked out. Then, as I vented to PJ (thank God he was with me) I was able to calm down. I told Dr. Nixon that I was scared - and he said, well, if it makes me feel any better, if it is cancer, we just shoot it with radiation to kill it and stop your pain. What we are treating on the liver is way more important than this, that there is an easy fix to this. Yes, that does make me feel better actually. So I process this through, while feeling these awful flu like symptoms from the stupid Vit D - then something just kicked into gear for me. I looked at PJ and said "well, ya know - this whole hole in the shoulder bone thing could really earn us some extra money. I could be a new game at the county fair, have people like, toss a small ball through it to win a prize". Then we began to brainstorm on all the uses for this, you could string your purse through it, you could put an earring through it, you could go hardcore and pierce it with some sort of spike or something. If I was really desperate, I'm sure the adult film community could find a use for it. (kidding) Point is, is I need to tune into my sense of humor. I've lost that so much lately, and if I sit and be sad and scared and wallow in this sea of self pity - then not only is life passing me by while I do this, including my children lives, it totally plays into the fear. I refuse to do this anymore. I can hear the Holy Spirit guide me through this (which dr and which procedure is right) trust the Lord has my back here, and live my life. Yes, my life has a lot of dr appts and tests and other things in it that remind me of my cancer all the time - and I continue to have moments that it totally pisses me off - it reminds everyone of my cancer - but there are other parts of my life that aren't centered around that. That's what I'm going to intentionally focus on. I have been in this fog the past couple of weeks, and I'm telling you, it's like this news lifted this fog right out of my brain. Am I tired of being in pain, yes, and this can only be one more step towards ending this toxic way of thinking. I'm missing everything when I think like this!!!! So that's what I'm working on.

I'll know more on Monday - so until then, I'm livin life the best I can, pain or no pain. We'll figure this out. This may sound totally hokey - totally 'Jesus Freakish' - I don't care - I'm as surprised as anyone else that this is where my brain is just a couple hours after receiving this news. Perhaps my beautiful prayer circle was heard loud and clear yesterday, eh? My devotion for today said this:

I am above all things: your problems, your pain, and the swirling events in this ever-changing world. When you behold My Face, you rise above circumstances and rest with Me in heavenly places. I guarantee you will always have problems in this life, but they must not become your focus. When you think of yourself sinking in the sea of circumstances, say "Help Me Jesus!" and I will draw you back to Me.

I'm telling you, my brain just went there - I think it was kind of a decision, but more like an unconcious shift in perspective. Crazy.

So there we have it. Thanks for you prayers - they help so much I can't even explain. I've been asked to give my testimony for the church this month, which really just warms my heart. I know I am supposed to share - be it speaking, music, leadership - I know I am supposed to share and serve. I just know it.

God Bless