New Year Enlightenment from a Chemo Chair

This past couple of weeks has been a whirlwind of emotions. Had a lovely Christmas but I must admit I spent most of it enormously worried about my mom. She and Brit came to spend the holiday weekend with us and watching her fight through this chemo is tough. Tough for her, and tough for me. I wish I could fight it for her - there I go again, trying to wear her shit. In any case, she's fighting. Then we packed everyone up and did a 24 hour road trip to Sierra Vista and back for PJ's Gma's celebration of life services. I was worried about this trip - financially and also because of Ginger's recent seizure pattern. Fortunately, God provided us the funds to go (and a broken hot water heater to boot) and I adjusted my car rules to try to accommodate Ginger in making this trip as comfortable as possible for her. All went well, and the service was absolutely breathtakingly beautiful. I've never witnessed one of these Catholic masses, it was astounding. What a respectful way to honor someones life.

I then headed to my appt at CTCA on Wed of this week - my 30 day check up. I really didn't think much about this appointment - I was settled in the fact that they would be running my blood work then I would get my calcium treatment and that would be it. I'm really enjoying not being on any medication at all right now. Feel like myself again. I know this will not last forever, the estrogen blocker is on the horizon - but they need to keep me clear of everything until the theresphere takes it's full effect - 12 weeks - so I've got one month to go - woo hoo!!! It had snowed all night the night before, so driving out of town was a bit challenging (thank you PJ for making fun of me skidding down the road), but off I went.

I didn't know how much of my old 'self' I had been feeling - and I didn't expect to address some things at this appointment either. This is difficult for me to write about, difficult for me to face up to - so here it goes. I'm sitting there in the examination room, as I do at each of my appointments. As these appointments usually work, I am scheduled to see my whole team each time I arrive one at a time - my onc, my nutritionist, my natuopath, etc. I didn't see my mind and body therapist on my schedule, and felt like I needed to see him to talk about my mom - so I asked if he could be switched with my naturopath - done. Seems though legally I still need to meet with that guy because I am taking supplements, so we chat and I start asking about my mom's supplements she is currently receiving. Interesting. So then my onc nurse, Amy, who is like someone I have known for years but I guess I've only known here since I started going to CTCA - she says she is filling in for my case worker who is out of the office. This, is not by mistake. I feel WAY more comfortable with Amy then I do with anyone else - which is where an issue now starts to be addressed. I'm talking to my doc and others about my face flushing - it has been flushing for a couple weeks now, on and off, and it's really annoying. My cheeks right under my eyes get burning hot - and I don't know why. Is this a side effect of the theresphere? They check with everyone involved - no. Maybe it's something I'm eating or drinking. What are you eating or drinking? I answer, 'well, I've noticed it after spicy foods, when I drink lots of coffee, and when I drink a couple glasses of wine'. Amy asks me 'how much wine are you drinking?'. I answer 'one or two glasses a night'. She looks at me - she looks at me with the kindest eyes, and says 'no Dina. You have to stop that. That could actually cause a re occurrence and your liver is already working hard enough as it is'. I am sitting there, embarrassed, humiliated and baffled at myself for making this choice. I recall this behavior from years ago - alcoholism runs in my family and I know I have an addictive personality. I fall into the 'all or nothing' category. I take a quick inventory of my behavior and realize this has been a pattern of mine for the past, maybe 3-4 weeks. Taking a percocet and having a couple of glasses of wine - every night. This is how I have been choosing to handle the stresses of my life - and not to defend the behavior, but my plate has been full and it makes sense that this happened I guess. From my husbands father, to my mother, to Ginger's seizures, to me - the list is a bit longer but that's what I've been processing, and now I'm very well aware of the way I've been choosing to process it. Not good. Enter the mind body therapist now, who has been brought up to speed by everyone else on my recent behavior. We talk about my mom, I cry, we talk about my choices in drinking wine so often - and he says something very powerful to me. He says 'I take it there is alcoholism in your family?' I answer yes. He says 'then let's break that cycle here - now - for your children'. Wow. I told him I felt like an idiot - I can't believe I was doing this knowing my liver was trying to fight cancer. He said I was not an idiot - that it wasn't really a choice at the time, it was a behavior. Now that I'm aware of the behavior, it's time to make a choice. I truly felt like this was a mini-intervention - talking about this was the furthest thing from my mind that day - to be honest, I didn't think anything was really wrong. I was lost in my behavior.

So, my onc walks back in and says that the last scan I had last month showed some fluid around my heart. He thinks this was probably due to the theresphere and week long chemo, but wants to do an echo cardiogram just to be sure. Okey dokey. OH - and he looked at my recent TOPS surgery and thinks one side it a little infected. So I call my plastic and he has called me in an antibiotic for me to take for a week. Yay.

I do the echo - then I go up to infusion for my calcium treatment. I have a nurse, Peggy, whom I've had before - she is lovely. They are all - lovely. Are you comfortable, do you need anything, can I order you lunch, something to drink - it's like the Ritz for cancer patients - seriously. Anyway, I don't know how we got on the subject of faith, but I made the statement that I didn't know how anyone can get through this life, cancer or not, without their faith. And she says this "Where else can you go when you get to the end of yourself?" Wow. I thought about this statement all the way home. I am so very grateful that God has placed these people in my path - to lift me up to Him when I get to the end of myself - to care for me - to love me - in the way that they have been called to do. I was suddenly filled with this strength, this will, this readiness to face life with my spirit - and nothing else. I was able to see why I had reached for these things - these things that made everything just fuzzy and out of touch - so I didn't have to 'deal' with it - or I felt that I was dealing with it with better eyes. I was wrong and these people caught me - unbeknownst to me.

So I come home and discuss all this with PJ who is extremely awesome as always. He says he will stop drinking beer, which he totally doesn't have to do - but he says he will. I told him that if this turns out to be like when he stopped drinking coffee for the Fat Smash and turned into a total asshole, that he needed to promise me he would just drink a beer. He agreed.

I read my daily devotional that evening, which of course I hadn't really read in weeks because, well, I just hadn't. I need to share a portion of this - I know we can read something relevant into just about anything, but this is just freaky:

'Sometimes, all I think about is what I can't control. I focus on the problem and the unfairness of the situation. Even though I've prayed, confessed my needs and presented my resources to Jesus, I stay focused on what I can't do. It's a pretty limited view of the situation.

I somehow forget that I'm standing next to the One who can feed 5,000 people with five loaves of bread and two fish - and have leftovers! Sometimes, instead of doing what God has placed in front of me, I do nothing.

Perhaps, instead of wringing my hands with worry, I need to get busy with what I can control. There's always something I can do to bring order to my situation. It's not a distraction technique, it's an act of faith. Jesus is still in the business of miracles, and I definitely can't do those.

Dear Lord, forgive me when I focus more on my own limitations rather than Your power. There is nothing too great for You. Help me to turn my thoughts away from what I can't do, to what You have placed in front of me. I trust You to do the rest. In Jesus' Name, Amen.'

I was listening to this radio station on the way down to Phx that day and they were talking about New Years Resolutions. They were choosing to use a word instead. Come up with a word - a word that describes what you want to try to accomplish within yourself for the year. That word can be a type of 'mantra' for you throughout the year. After much thought, it just has to be TRUST for me. I feel like I've got a pretty good start on this word, but it needs some serious tending to. Tall order. But I've got a word I can focus on this year. Totally excited to get started.

Happy New Year and God Bless -

Wear Your Own Shit

So I truly believe it was something spiritual that gave me this image the other morning, as a way of defining what I have been feeling this past week. I will try my best to explain this here.

We all have our own shit going on - all of us. You can't compare that my shit is worse than your shit - it's all relative. To US - it is the most important. Now think of all this shit as clothing - like we all have our own situational closet full of clothes - wearing what the day tells us to wear more than likely, rather than CHOOSING what to wear and making the day what we CHOOSE to make it, as God teaches us. Anyway, I digress. It seems I have been trying to wear other peoples clothes again. I try their shit on, pry myself into it, find myself swimming in it - in the long run, it just doesn't fit - why? Because it's not mine. It's not mine to wear - that's why it feels uncomfortable, which then leads to anger, frustration, irritability. I put peoples clothes on and think I can MAKE them fit me - so I can fix it - then give it back. Problem is, if my some means of a miracle I was actually able to fix it and make their clothes fit me, then when I went to give it back, it wouldn't fit them anymore. It is the hardest thing to do sometimes to just walk your own path, wear your own shit. I think sometimes I DO want others to wear mine, then I won't have to. It goes both ways. Point it, we have our own shit that we need to wear, figure out, and choose to deal with. I am the ever longing 'fixer' type of person, so this is especially difficult for me. I must learn how to support people as they wear their own shit, and respect them on their journey, and certainly get back to wearing my own. I suppose SHIT is a strong word to use, perhaps it should be LIFE or STUFF or something like that, but this is just what came to mind.

So, back to my shit. I spoke w/ Ginger's neurologist yesterday and we are going to schedule a MRI. It was a wonderfully comforting conversation, which in the end he stated that he did not have the eyes to look inside her brain and see why this was happening to her, but this test would give him those eyes. Fair enough. Until then I am finding myself being a 'hovering mommy'. Not really feeling bad about it either.

I am healing well I guess, we are heading to phx today for my f/u. One side kinda looks like its half dead tissue or something (the left side of course, the side that has protested this all along screaming THERE WAS NEVER ANYTHING WRONG WITH ME!!) so we'll see what he says about this. I'm bringing both girls w/ me again, so this always proves to be interesting. Fighting a cold right now too - just trying to get sleep at night, yea right.

Despite the STRESS that seems to live in my house right now, I am trying to be present in these days leading up to Christmas. I am a Christmas crazy kind of person, and I am turning my girls into the same. PJ? Not so much. Oh well. These days are gifts I am reminded this morning. I wake up and continue to thank God for the life I have been blessed with - and to soak each moment up as much as possible.

This past year was so different than the year before with this disease - I can only imagine what is to come. What I do know is my kids fight over which side of mommy they get to cuddle with - and ya know what? If my days are filled with breaking up those kinds of arguments - then I'd be silly to not wear my own shit - it actually fits quite nicely.

God Bless

The Price We Pay for Teacup Piggies

So - surgery was Friday and it went just fine. So glad to not have to go back under the knife again for any of this reconstruction stuff anymore - Praise God!!! My good friend Jennifer took me down for my surgery and drove me home - we had a pretty good time actually. Funny how a surgery can also decoy for some well deserved 'girl talk time' in the car. We had a great time, laughed a lot - and she is an absolute angel for doing this for me - a week before Christmas when everyone is running around like crazy people. What a gift our friendship is to me.

So - I have these 'caps' taped to my boobs that seem to be holding on my newly formed 'nips' we shall call them. This is hysterical - so get this - at the pre-op - I tell him I don't want them very big and he says to me ' oh they are going to be pretty big so don't freak out'. Wha? I was like 'what do you mean BIG - like thumbs? what is big?' He says 'no they are going to be just kind of tall - they shrink though so don't worry about it. It's easier to make them smaller than it is to make them bigger'. Hmmmm. Now, I'm not sure how he did this, this is the problem with going to these dr appts on my own now, is it is difficult for me to remember everything that is said or explained, mostly because I have my kids with me now - but what I think I remember him saying is he was going to cut into my own skin and gently form this 'nip' out of my own skin - not the scar tissue as I had originally thought - just above it actually. He said this was the easiest out of all of the surgeries and that I could basically go back to doing everything I did before on Monday - sorry to say that I had a full weekend schedule this weekend, so I probably pushed it a bit too much. Again, week before Christmas - lots to do. Thus my title. My surgery was at 3:30 in the afternoon on Friday and yesterday I was at the Prescott Armory helping to sell raffle tickets at noon for our MOPS fundraiser. Was there till 4 then made the trip to the church to store the raffle items, met PJ at the mall with the girls where they saw Santa (precious!) then when I realized that the only Toys R Us up here had run out of Teacup Piggies (something Ginger really wants this year) I go gallivanting on to Walgreens while PJ takes the girls home to see if they still have any because I vaguely remember seeing them in a display but had Ginger with me at the time and couldn't do anything about it. Again with the frickin Walgreens - what is it with me and this place!!!! So a lovely woman who works there finds it for me - way on the top shelf and I am thrilled - I go to reach for it and feel something wet run down the front of my belly. Yep - I'm bleeding now - great. I excuse myself by saying I just had surgery yesterday and could I please use the bathroom as I was having a little problem. Luckily I indeed have the best hubby in the world who told me to pack gauze and tape just in case, which I promptly whip out and begin to bandage up my seeping wound. It wasn't that bad - more scary than anything else. But I must had been in there awhile because she came in asking after me. The point is - I got the Teacup Piggie for my Ginger. Hurrah! And I drive home beating myself up for pushing it way too much yesterday - shame on me. Now I'm just hoping I haven't caused one of my newly formed NIPS to just fall off. Pray Dina, Pray. Pray for the NIP to stay intact - please. This is the end, so don't f)(*ck this up!!!!

I come home and assess the situation, and it continues to bleed throughout the night, not heavy, but I did change the bandage twice before I finally went to bed. So yea, I was a little concerned. I also know I have another full day today - with a huge church service at our church marking the 140th year in existence, a rehearsal for Madeline who wants to be in the Christmas Pageant and then she and I are supposed to have 'girl time' and have our nails done - which sounded fine at the time, but now just sounds horribly stressful to me. I figure I'll be fine as long as I just don't move around too much and keep people from bumping into me or hugging me.

Without going into specifics, I just need to vent here a bit. The past week of mine has been filled with such a roller coaster of emotions I feel like I'm swimming in random feelings. From a heated discussion with family about PJ's father, to a heated discussion with my mother about her care and well being, to my surgery, to my pushing my own limits and not taking the best care of me once again, to feeling stress with our home church then it all comes to a head this afternoon with Ginger having another frickin seizure out of nowhere then my husband and I at each others throats this evening - when we should really be embracing each other in this 'fear' of ours instead of fighting each other. Even through this whole stupid cancer thing, I think I have subconsciously always felt like I have maintained some sort of control - I have been painfully mistaken. I feel so out of control right now, I don't know which way is up. I think I am trying to hard to be so many different things to so many different people, I am starting to go a little crazy. I watched my little Ginger with this seizure today and just felt like screaming ENOUGH!!! THIS IS ENOUGH!!! Then once I had her in a good place this evening and my hubby and I went at it I literally felt like running out the door and just running down the street screaming. I just feel like I'm about to burst - do you ever feel like that? Like you are just about to explode? I can hear God's voice - I can hear it, way off in the distance, telling me to trust Him, to give it all over to Him - but it's so hard - especially with your family - with your KIDS for Christ's sake - to simply hand it over - so hard. I was starting to think this surgery was just poorly timed, but I didn't have a choice really, my deductible refreshes at the first of the year and I would really, really really like to have a year without any surgeries - wouldn't that be nice? Now I have to get on the horn and start making calls about my Ginger - my sweet little Ginger who has now had 6 - 6 seizures in the last year and 1/2 - and I have no frickin idea why. No fever this time either - the last 3 were a complete mystery. I call the pediatric neurologist tomorrow. Please keep little Ginger in your prayers, if you pray - I just want some answers.

I don't mean to bitch here - I guess I just have a lot on my plate at one time here recently - and perhaps I'm handling it poorly. All I know is that my instinct is to come at things with Christ like eyes - to try my hardest to be the best person to everyone around me - to show up for each other. Sometimes lately I've felt like all I get is a big slap in the face, but I guess that comes with the territory. I'd rather be that positive person who more often than not is misunderstood and misread, then the bitter asshole sitting off in the corner.

Wow - sounding off a lot here - sorry for the rant, but then again, that is exactly what this blog is for. Still trying to fight cancer here too BTW - oh yea, that little ditty. I have attached a pic of what my recent surgery created - it looks pretty 'gross' as Madeline described - I get to finally take a shower tonight, so I'm going to go and do that. Doc said 'if the caps fall off, just stick em back on again. Let' s hope that doesn't happen. Yikes. This is so strange because I can't 'feel' anything - so strange.

Something the Bishop said at this mornings service has stuck with me today - amidst all of this BS going on in my life - that we were all created with a God shaped hole which needs to be filled. What an awesome image -

God Bless

I get new tits AND hair for Christmas this year!!!!

So - last week was a bit rough for me. The Elizabeth Edwards thing hit me particularly hard - I couldn't help but compare myself to her - but I'm finding on this journey - we breast cancer patients seem to want to 'have our cake and eat it to' when it comes to this kind of stuff. It makes us feel good to compare ourselves with stories of people who beat it or are surviving it - then when we lose someone to the disease we spend all this time trying to convince ourselves we are on our OWN journey and that is very individualized. Funny thing is, no matter if the story is good or bad, we are still all on our own journey regardless. Hard to remember that sometimes. In any case, my heart breaks for those children who were robbed of a mother this early in their development. She didn't deserve this, and neither did her children. Wish her hubby would have shown up for her in a better way this last year of her life, but then again, this is not for me to judge. Not there when the lights are out - that was their private life, and I just pray she found some sense of peace when it came to her family unit at the end.

Speaking of robbing, my husband and I were just speaking the other night of what this disease has robbed us of - as a couple, there are many struggles. Again, I think it is ironic that breast cancer just seems to rob you of everything feminine about you - it certainly makes you dig deep within yourself to find the real you, and get real familiar with that part of yourself. I realized I had tied much of what I thought was "ME" in a bunch of superficial bullshit - this disease just strips all this down and make you stand there, 'naked' in a sense, in front of the mirror and asking the question 'who the hell am I?'. Similar to when you quit smoking or break a bad habit that you tied a huge part of yourself to - difference is with smoking, that is a choice to quit - cancer? Not so much. In any case, my hubby and I were listing how different we are now, and how we wished we would have taken advantage of what were were before this disease took hold. I'm talking sex, having another baby, stuff like that. Funny how I start to feel guilty when we speak like this, as if it was my fault this happened or something. There I go, trying to control everything again. Arg.

I'm feeling great though - I go for my final reconstruction on Friday so I'm curious to see how that turns out. PJ needs to work that day so my lovely friend Jennifer is accompanying me to have my 'tops' created - not many people you can ask to that strange event, eh? 'Hey Jen - would you mind driving me to the hospital to have my 'tops' recreated?' Nice. I'm excited to finish this, considering this time last year I was sitting here with infected expanders, fighting it with antibiotics and pain meds, headed to the Polar Express trying to make it through Christmas - we've come a long way baby. AND - so glad I decided to get back on the horse so to speak with this reconstruction thing - what a huge subconscious difference this has made for me, thus, my husband and our relationship. It has made a difference in who I wake up as each day, as corny as that sounds. It was definitely the right decision for me - not everyones choice, but for me, definitely good.

I'm starting to finally try to make long range plans. For the last 2 years just about, I've been living week to week - literally. I wasn't even aware I was doing this, but I was. Now, I'm starting to really change my attitude and look towards the future and make plans. Nothing extraordinary, just simple stuff like what we want to do for our summer vacation next year, stuff like that. Whereas before, I would never have looked that far into the future. Feels good - I am always prepared to make changes if necessary, but it's nice to finally feel comfortable to let my mind wander this far.

I talk to God and Jesus a lot - everyday. I interchange them actually, mostly Jesus I guess if I had to choose, He and I just feel like old friends sitting on a couch sipping a glass of wine together, which, when I have kids in my minivan after school and they are screaming for more Michael Jackson, comes as a breath of fresh air if I can channel in correctly. Anyway, He and I had a good conversation recently about people. I consistently expect people to just think the way I do. It isn't even a conscious decision, but I have been finding myself more aware of this a lot lately. Then, when I realize they don't, even when I try to explain it further, they STILL don't think the same way I do - isn't that just a pisser!!! I get so frustrated. Jesus reminds me to remember when this happens, that my life experience is something few people will ever be able to grasp, and it has given me such a gift of viewing life in such a different way, I can't expect people to get it, most people just don't. The best I can do is express my point of view, and let God do the rest. Wow. That is hard, but I hope if I keep this at the forefront of my brain, it will eventually get easier.

Off to my pre-op appt in Phoenix this afternoon. I'm bringing both kids w/ me - and called the dr office to warn them. I have found that if they are running behind on appts when I arrive with children, amazingly enough - I am just in and out in no time at all. Hmmmm - go figure. :-)

God Bless -

Where is the love????

So - to bring you up to date - Madeline's procedure last week went GREAT! Well, as great as putting a catheter in a 5 year old can be - she handled it like a trooper and was her brilliant self - she did get serious with me for a moment at the end while we were getting her back into her street clothes 'mom - I don't ever want to do that again'. I told her that I really wished we wouldn't have to and how proud I was of her. We then skipped off to Five & Diner and had a fun lunch together. These moments teach me so much - kids just deal with things as they happen, then when it's over - its over! They don't relish in it or re-tell it a thousand times - or complain (yet!) - what a lesson she has taught me.

Weekend was fun as I had a friend come and visit me from NY - I hadn't seen her in some time and I had a bunch of holiday stuff planned for she and I and the girls as PJ was out of town on his elk hunt. Little did I know she converted to Jehovah's Witness a couple years ago. Needless to say - AWKWARD! But I guess it all worked out fine and we ended up having a fun visit. I think she was ready to go though - I don't think she quite expected the loudness of having little ones - and they were loud. God Bless them. My house and girls are Christmas CRAZY - Christmas threw up in my house - it's obnoxious.

So - I am feeling great - and so happy about my results last week - just been feeling full of hope. Finally got back to the gym today, and maybe it's just today, but I felt like people were looking at me like I just pushed a grandma into the street or something. Weird. Just a 'not so friendly feeling' today in the gym. And, the news is filled with this Elizabeth Edwards story - the jist of it is, her breast cancer has returned and this time is has returned on her liver so she is not seeking any further treatment and according to the vast news reports - she has her family gathered and has weeks to live. Now, let me just say that I have such mixed emotions about this. I'd be lying if I didn't say it spooked me a bit - because it does. But, I've been trying to find out what KIND of breast cancer she has and I can't seem to find out. I also have read that she is physically not in a real good place, so perhaps theresphere isn't an option for her. These news reports are just chuck full of stats on metastatic breast cancer, and I keep reminding myself that you can't apply a statistic, which is a figure based on thousands of people, to an individual - it just isn't matching apples with apples. My instinct upon hearing this this morning was to find an email for her and plead with her to try theresphere - why isn't anyone bringing that up to her?? Then I think of the crap she has had to deal with this past year, and wonder, how much of her time was really able to concentrate on fighting this thing? With a husband who admittedly had an affair and a child with another woman - I can't imagine what that would do to a woman, let alone, the whole frickin world knowing about it. Bottom line, it is impossible to fight this thing without people in your corner, specifically, your family. This story has brought this to the forefront for me today - how blessed I am to have the loving husband I have, the amazing children I have, the most awesome set of parents in the world (that includes you Nancy!), and a community of friends that has reached wider than my wildest dreams. You - you all make it worth the fight, your love and support make it easier for me to do this - what a blessing you all are. I thank God each and everyday for the people He has specifically placed in my path - you are all precious to me and I thank you.

I don't know what the deal was at the gym today - tomorrow I'll wear my t-shirt 'Yes they're fake - my real ones tried to kill me' and see what that stirs up. :-)

God Bless -