Wednesday, February 24, 2010

My life could be a country song. Or else it's just hormones. Either way... ugh.

It's been ages since I've blogged here, or anywhere for that matter. If you are unlucky enough to know Pregnant Cassie you will find that I get really reclusive, negative and sullen when I am with child. And this is the point in the pregnancy where it gets really bad and I pretty much try not to talk to anyone because I'm probably not going to say something positive. I've mentioned before that Phil is the Tigger and I'm the Eeyore. I'm all, "Oh dear God! The sky is falling!" and he's like, "Awesome! I've always wanted to touch the stars!" When I'm pregnant, running out of milk is akin to the apocalypse. You can imagine I must be a delight to live with.

Since Phil has taken over the blogging here lately I've just been laying low, nesting my face off while simultaneously breaking up preschool brawls. I know many of you come here because of the positive, encouraging way in which Phil expresses himself and the way he lives his life. I haven't wanted to poo on the parade, because lately I'm so the antithesis of the good vibe he's got going here.

But today I was thinking that probably most of you normal people operate somewhere right in the middle of Catching Falling Stars and Milk Apocalypses, and also I began this blog as a way to record this entire experience... good, bad and ugly. It just so happens that right now, things are a bit ugly.

As Phil mentioned in his most recent post, the dates for transplant have been scheduled and they coincide with the baby's birth. We're over the whole wanting Phil there for the birth thing, because his long-term health is obviously more important than being present for that moment, but this poses another dilemma. If I have the baby before transplant there's just no way I'll be able to be with Phil during his inpatient stay at the hospital. As Phil mentioned, we were not at all happy to learn that everything had been scheduled and no one spoke with us about it first, and then when I called back, trying to get some of the dates moved up, I got absolutely no where. Frustration. Annoyance. Tears.

We've grown accustomed to our interactions with our amazing myeloma medical team, who go above and beyond (I mean, truly... to the point you wouldn't believe) making sure we're all on the same page and that we're comfortable with everything and they let us know we're part of the process here. Plus they ask about me and the baby and the kids and our LIFE and they really care about who we are, not just the myeloma, you know? So to go from that to a scheduler and a coordinator who seem apathetic to our needs and our situation is frustrating at best and infuriating at Pregnancy Level. (And let me just say I realize that everyone in this particular situation has special concerns and extenuating circumstances and in no way are our needs more important than anyone else's, but a little compassion goes a long way when your entire job is to work with people like us, you know?)

Also, while we're on the subject of bad customer experience, the hospital billing department is a big fat jerk. But our insurance company makes them look like fuzzy little kittens.

On top of all of this, it seems like the sky is falling for several of my friends right now also. Like unbelievable tragedies. And then on Friday my parents' Golden Retriever, Libby (who was my dog until I moved out), died unexpectedly. So it feels like my already broken heart might never get a chance to mend.

Despite the heartache, there's a lot to look forward to, and a lot to be thankful for. Our family and friends' dedication to us during this time has been unbelievable. We have meals coming every week, our neighbors shovel our sidewalk, my parents keep the kids two whole days a week during infusions, entire churches and communities are praying and pulling for us, and my friends and I are beginning to brainstorm our care once the whole transplant/birth situation unfolds. We are truly not alone, and are so dependent upon the people who have made it their business to be in our business. Like Phil has said, how do you even come close to repaying that?

So I know it's not the end of the world, even though right now it feels like it should be. Or could be. I know one day life won't be this complicated or painful or exhausting. But it's nice to know that when things have completely fallen apart we're enveloped in the support of our loved ones who hand us tissues and help us sort through the mess.

I hope you're all staying warm and toasty and that your skies are blue and sunny.

8 comments:

Lorna and Mike said...

Hi Cassie.
You make me realise just how lucky I am. Having had 5 pregnancies and the attached hormones I know how that feels, and now I'm the other half of a myeloma sufferer. I thank God that I never had to suffer both at the same time. You are both so brave.
Lorna x

Roobeedoo said...

Cassie, I applaud your honesty. I was wondering how things were for you,when it's been Phil we have heard from on the blog. I love that you are Tigger and Eeyore! Sounds just like me and my FL - except recently we have swapped over from him being bouncy bouncy bouncy to a sudden sky-falling mode, while I have been cheerleading instead of mopey-goth-ing. The perfect couple! I remember maternity moods and I am so glad to hear you have people around you to allow you just to be quiet and cosy and take the pressure off. I suppose you have to find a way to deal with each of you separately, healthwise, yet operate as a team. Flipping heck that can't be easy! Thinking of you both!

Jill Hall said...

Cassie, I have not even met you and yet you are a blessing to my life. I believe God loves our honesty. Yes, I am a tigger in life, but life needs eeyores too. God meets us where we are and always provides in ways we cannot imagine. I can't even begin to imagine all you and Phil have had to go through, but it is a privilege to hold you up in prayer.

tim's wife said...

Cassie,
I think it always helps to get the tough stuff off your chest and post it out into space. It's hard not to get angry when too many sucky things pile on. I think your post shows how many of our marriages work. Only one gets to be crazy at a time. The other picks up the slack for them. There are times when my crazy hormones have me tying a big
ol' knot in the end of my rope and hanging on for dear life waiting for the hormones to swing back the other way and get me outta my funk. The only way I could cope when we were going through Tim's transplant is to try to take one week at a time. Get through the appts. for that week and try not to think too far off. Tim's SCT got pushed off too and the timing stunk but we got through it and during this MM journey we have come to realize that some things we thought were really bad at first, turned out to have some divine intervention involved and we were spared something else. Tim is definitely the Tigger around here.
Olivia is too. I am part Eeyore,
(probably won't), have the anxiety
of Piglet(Oh d-d-dear-dear) and
a lot of Pooh's overactive brain(think, think, think) Oh bother!
but it takes all of that to make the "hundred acre wood" a magical place.
Signed,Denise from Jersey who is bracing for another "blustery day"(6 to 12" more of the white stuff)

Ivan said...

Cassie, good to hear from you. My heart goes out to you both. It is hard planning the transplant and must be made even harder with you expecting your new family member. My thoughts would be get the transplant out of the way and enjoy the rest of your lives together.
My wife Averil had been there all the way for me and I think you are both fantastic, I love the thoughts of you both being Tigger and Eeyore, what a great description.
Go with it Cassie and Phil, follow your path.
I went to a lent prayer group today, it was suggested we talk to God the way we would talk in life, it was suggested that if we feel really angry we should even feel we could swear at God in a conversation because he understands our frustrations.
God bless your family, thoughts and decisions.

Ivan in Warrington UK

Carolyn said...

Know that you are loved very much and that prayers are being said for the ultimate peace of our Lord in your heart & soul. Wish we were there to hug you and help you. Tweetie

Steve said...

Cassie U R A Mazing!! :) Phil, Miss ya buddy, can't wait to Kick it with ya! Punny... I'll be praying for you two and three, see you in May! :) God Bless!!

Becky said...

Of course you are feeling grumpy, with all that to deal with! We are praying for you too. And you know, every encounter I have lately, however small, with the medical establishment, just leaves me angry at the inefficiency and injustice of the whole system. You guys must be hardy warriors by now. I cannot even imagine all the fuzzy bunny kicking you have to do!