Monday, March 28, 2016

On being an Easter person...

Easter has passed, in a flurry of rainy weather, food and flowers. With a bit of chocolate thrown in.  At first, I felt a little surprised by the coming of Easter. It seemed like it sneaked up on me while I wasn't looking. I felt a bit lost, because usually the Easter season is a time of reflection for me, aided by liturgical material that helps me draw close into worship and a renewed focus on Jesus's life and power at work within me and my world.  When Easter just seemed to jump out at me this year, I initially felt that I had been negligent, too focused on Mutant to meditate on my Lord.

 I waited for the tsunami of guilt to hit.  What came instead was grace.  And clarity.  I've been clinging to Jesus, like a monkey on her mother's back.  Forget holding onto the hem of His robe, I've jumped into His arms and am clinging to His neck with everything I've got. My face is pressed into His chest, when my hands shake with nerves, He takes them in His own and holds them until I am calm again. He wraps Himself around me at night, in my husband's love.  He responds to the prayers of others with a deep sense of His peace and stillness.  He throws His head back and laughs joyfully with me in the sweetness of my children.  He breathes hope into me in the quiet life of the forest. He speaks into my Spirit through His Word. He is undeniably, powerfully, soothingly, honestly, deeply here. Alive. In me.

Yesterday, on Easter Sunday, I remembered a sermon I once heard that encouraged me to be an Easter person.  Easter people are alive, deeply, extravagantly, spiritually alive.  Easter people live daily filled with the power that raised Christ from the dead, alive and active within them. (Eph. 1:19-20)  To me, in these days, being an Easter person means being brilliantly alive even as Mutant is trying to end my life. It means serving others with the power of gentleness and compassion even as I struggle with pain in my body.  The power of Easter, the power that lives in all those who have welcomed the Spirit of Christ into them, is the power of love, of patience, compassion, gentleness, humility, forgiveness, protectiveness, trust and hope. (1Cor. 13:4-7)  We have access to the power to love, radically, sacrificially, extravagantly, but we don't all choose to live in that power.  Easter people love fearlessly.  Ah, but we have to have common sense.  No, we don't. In fact, Easter is the celebration of what God can and will do when we put down common sense and self interest and embrace love fully.

So, I think the reason the Easter weekend surprised me is because I have been living as an Easter person more and more these days. Thanks, oddly, to Mutant.  Don't get me wrong, I still want her dead, dead, dead.  And to that end, I'll be starting radiation treatments this week. 

Oh, and Grace is coming home this week!!! She'll be here with us on Sunday!  Lately I have literally been pining for her, that aching longing to have her in my arms again.  Oh my goodness, I am happy that I will be seeing her soon!

Peace out!

Monday, March 21, 2016

On ray guns, armor and hiding under the bed

Last Thursday I met my radiologist in Worcester, after which I went to the cancer clinic in Fitchburg where I'll be receiving radiation treatments. Both Brian and I really liked my radiologist, Dr. Moni. She explained everything well, and was very honest with us. There were some hard things that she had to share with us, mostly about how the radiation treatments will affect my body, and in particular, my bladder.  It's not pretty.  But I'll get back to that.

I'll be having my treatments in Fitchburg because it is closer to where we live. The treatments will take place five days a week for five weeks, and it's important that we are able to do them at a center that is as close as possible. Fitchburg is only about 20 minutes away from us. The staff at the cancer center were wonderful. I spent almost an hour in a CT simulation, where the treatment team worked to identify the area that the radiation will be aimed at.  Dr. Moni had asked them to scan me twice, I think probably in an effort to be even more precise, to avoid my bladder as much as possible.  Everything is set up so that when I arrive for the treatments, they just need to put me into my pre-arranged position, punch in the appropriate setting on their ray gun and zap!

Dr. Moni made it very clear that five weeks of radiation won't be enough. The cancer hasn't spread past my cervix, at least not in any discernible way, but it is oddly aggressive and is growing in my uterus. I'll also need internal radiation, where radiation nuggets (bullets?) will be placed inside me, right onto the cancerous area.  And after this, I may still need surgery.

There was a moment, after I had received all the information about what the plan was, what the radiation will do, to the Mutant and to the rest of me, that it all seemed to sink in at once.  I was inside the CT scanner, lying on my back, relaxed, listening to the whir of the machine that was holding me.  Everything that I had been told in the previous hours flooded my mind, and my heart plummeted. I was filled with a feeling of dread. This is going to be awful. Worse than awful. Not only would the therapy cause issues with my bladder, bowels and lady bits during the treatment, some of the damage, particularity to my bladder, could be permanent. These treatments could make my IC worse, permanently.


Over the past six months, I've been working with both my family doctor and my urologist to change medications and implement some healthier lifestyle choices, and I've been able to decrease my pain levels quite a bit.  I feel like my IC has been manageable, probably for the first time in 15 years.  The thought of the pain volume being cranked up again is discouraging.

The day after the visit to the radiologist and the cancer center was a quiet one. I was still exhausted and I felt sad and droopy.  Up to this moment, I had been feeling all empowered, jazzed up, ready to kick cancer's ass. Now, after learning, in detail, about how I wouldn't be kicking cancer's ass without kicking the crap out of myself at the same time, I felt like I wanted to take a nap. For two years. Maybe longer.

I told Brian, I felt like in Lord of the Rings, during the battle at Helms Deep, when all the soldiers stood on the ramparts in the rain, waiting for the battle to start. In the fields before them, thousands of angry, mutant orcs waited, ready for battle.  The thing is, I'm not Gimli, standing in the front row, jumpy with anticipation, looking forward to burying my ax in an orc's head. No, I'm the guy about five rows back, the one whose shield is too small and whose sword is too heavy. I'm the one who's silently wondering if this fort has a back door and would anyone notice if I slipped out?  My stupid helmet keeps slipping down over my eyes and my feet are cold. I'm done. I want to go home.

Of course, I'm not going home. I am home. The enemy is in my house.  I'm going to fight, and I am going to kick cancer's ass. I'll probably just whine about it a lot. You may find me hiding under my bed on occasion.  I'm reminded of Ephesians 6, and the armor of God. I'm glad to have the shield of faith, which is always the right size. And the helmet of salvation, which gives me clearer vision even if it does fall over my eyes, and the sword of the sweet Spirit, who will protect me in the eternal ways, and who will fight for me, always. Add the belt of truth, the breastplate of righteousness and the readiness that comes from the gospel of peace covering my cold toes and I'm fully equipped.  Also, I have a housecoat of snuggly warmth, friends and family of support and love, and a plush kitty of immense cuddliness.

I can't sugar coat this and mentally, spiritually prepare for it at the same time.  Sometimes reality stinks.  That's the truth.  It is my faith in God that gives me the courage to see things the way they are, not the way I want them to be.  Battles are called battles for a reason.  It's "fighting cancer," not "having tea with cancer" or "swing dancing with cancer."  I believe that God is here with me in my bloody, ugly, oozing, agonizing, miserable reality, and I believe that He is going to walk me through this.  My strength is from Him.  He is in me, and we will do this.  And because of Him, there will be laughter, and joy and so much love in this mess.  There is an otherworldly, ethereal grace that emanates from the Spirit of God in a wounded soul, for those who have eyes to see.  It's love, and grace, and incredibly powerful.

So, I'm gripping my sword a little tighter and pushing my helmet away from my eyes.  I may be so scared that I think I peed a little, but I'm ready to fight. Later.  After my nap.

Just a thought.

Wednesday, March 16, 2016

On Google and overthinking...

Today was a rough day. Mutant is causing quite a bit of pain, as well as messing with me in other ways.  As a chronic pain patient, I am accustom to living with some level of pelvic pain on a daily basis, and often the pain from my IC (interstitial cystitis) is more intense than what Mutant is doing to me now. But Mutant pain is more difficult to deal with emotionally.  I have spent years getting used to the idea that pelvic pain, no matter how strong, is not dangerous.  IC pain has been described as at times equaling the pain of bladder cancer.  It's benign though, always. While I may get irritable and weepy after several days of intense IC pain, I always know that at some point it's going to recede and I'm going to be fine.

Cancer pain is not like that.  It's malignant, threatening.  Cancer pain makes me feel fragile in a way that I am not used to.  It's difficult not to obsess on it. What is Mutant doing? Why is she hurting so much now, why is she bleeding?  Why do I feel so bloated and tired and why do my hands keep shaking? Why does my blood pressure keep dropping, leaving me feeling weak, shaky and dizzy? And what's with my new obsession with scary movies and television shows? And cereal? And super hero pjs?

My mum used to tell me that I over think everything. She was right. When I was younger, I think I used to frustrate her.  Everything was a big deal.  Being an over thinker is rough business when you're young and don't have a lot of perspective.

There's no question that I'm going to totally over think the cancer thing.  I think I need to. I need to know not just what I'm feeling, but why I'm feeling it.  As I've gotten older, I've learned that thinking and talking about life experiences, especially hard ones like death, illness and heart break, serve a purpose.  Talking abut hard subjects gives others the freedom to share as well, if they wish to. It breaks open the lie that we are alone, no matter how we may feel.  To hear someone articulate what we are going through, because they're going through it too, is a powerful thing.  The Bible speaks often about the power of words, about the importance of speaking truth out loud, to ourselves, our loved ones, our communities.

I think I also need to pay attention to the cancer thing because over the years, I have learned to ignore symptoms.  Chronic illness does that.  For a while I was hyper vigilant about my body and symptoms, but who can keep that up for years on end? Now, I'm like, Meh, if I wait long enough, it'll go away.  Enter cancer.  About two and a half, maybe three months ago I started hemorrhaging vaginally at around 11pm and it continued until almost 4am.  My response? Huh. That's weird. It didn't hurt, so how bad could it be? I figured I'm perimenopausal, it must be some kind of freak uterine last hoorah before the whole thing shuts down production at what I hoped was the near future. It made for a long night, but eventually it stopped and life went on. Needless to say, I wouldn't be as blase about something like that now.  Live and learn, huh?

To be honest, I am depending on God to keep me grounded.  To keep me from wandering too far into the future, from borrowing too much trouble from tomorrow.  Because frankly, Google is no help at all.  Google will not only offer me terrifying tidbits from my own future, but from other people's as well!  You wouldn't believe how many of my prayers begin with, "Okay, God? I was just on Google, and..." God is, like, child, back away from the computer...

Yes, God keeps me grounded, and filled with a sense of His care, and love.  And patience. Man alive, does He have patience!

Tomorrow I have a meeting with my radiologist, and hopefully treatments will begin soon. And on a positive note, I did read (yes, on Google) that the hair loss that is associated with radiation treatment is confined to the area being radiated.  So my mop should be just fine.  Woot!

And the beat goes on...

Wednesday, March 9, 2016

But Jesus...

This past week end, my two dearest friends, Sandy and Cathy, came to spend the week end in Massachusetts with me. They stayed in a hotel in Gardner, and I spent Saturday night at the hotel with them. It was brilliant. We went to Texas Roadhouse for supper, I got a 1$ pair of Batman pajamas and Sandy and I both bought robes that were so soft, they're like being wrapped in kittens. Alive kittens, of course. Purring, alive kittens. Glorious.

Then we watched a silly movie, laughed a lot and went to sleep. The next day, after a yummy breakfast, I got to take my friends to what has become, in my mind at least, my woods around my pond. 

And of course, in, around, over and under all of these activities, we talked. And laughed, and cried.  Okay, I didn't cry. I'm not sure why, you'd think I'd have reason to, but I haven't yet.  I'm too busy COPING. Although having Sandy and Cathy here just made me so happy, I forgot about coping. I was just really, really happy.  There was such a positive spirit. I think I really needed that. It's not like we don't have troubles. Mutant may be the reason we got together, but we are all dealing with some pretty heavy, painful stuff. And much of our conversation was about what is going on in our lives. We shared our pain, our concerns and losses and feelings about potential losses and fears about moving forward into more potential pain and struggles.  Still, we laughed a lot.

The thing is, Sandy, Cathy and I are all united in one area. We love Jesus and know that if we ever let go of Him, these trials we are in now are going to feel like a frikken picnic compared to life without Him..  Our hearts would break. I love how Cathy calls Him "sweet Jesus." She's so intimate and loving. When Sandy and I share pain that we never could have imagined living through, always one of us, in some way, says some version of, "...but Jesus..."

 For example, when I talk about how radiation might affect my already wounded bladder, how my urologist winced when I said that I might need radiation treatments, when I think that after 15 years of IC pain, Mutant might leave me with an even more damaged bladder, and in even more pain than ever...then I pause.  And look into the faces of my friends. I see their compassion, their frustration and, yes, even anger that this is happening to me. We take deep breaths. Hope nudges us. We nod thoughtfully, and someone inevitably says, "...but Jesus..."

But Jesus will give us strength.  But Jesus knows what we will be going through, and He is preparing us. But remember that time when we went through *insert trial here* and we didn't know how we'd make it and somehow we did? Because of Jesus?

Cathy, who has been through more than I can even imagine and who has a faith and love for God that is an inspiration to anyone with eyes to see and ears to hear, read this out loud to Sandy and I -

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you will know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anythingJames 1:2–4

 I think our unity comes in our belief that our struggles can be redemptive, that God is making us gentler, kinder, more patient, more selfless, more loving.  Stronger in all the best ways. In the holy ways. There is a fragrant air of peace and hope in our sharing, it is a place of rest and restoration to me.  Even my body was strengthened.  It was what I want to be for the lovelies in my life, my people who mean the world to me. 

I have a feeling this is the calm before the storm.  That's okay, because Jesus...

Just a thought. 

Thursday, March 3, 2016

Note to self...

Note to self - stop scaring the whoosiewhatsit out of your husband. Seriously.

I know that you don't like doctors. It's nothing personal, it's just the whole doctor thing. You've never really got past the "they'll think I'm faking" phase. Consequently, you can be doubled over in IC pain, clutching your heating pad and a useless bottle of advil, weeping and maintaining through gritted teeth, "It's fine, it's just my bladder."  As idiotic as that was, (chill, friend, I'm the only one allowed to call you an idiot, remember?) it really was just your IC, a miserably painful but oddly benign disease.

Now, you realize of course that Mutant is not benign.  Not only is Mutant malignant, but she is weirdly malignant, going from stage one to stage two in two weeks.  If ever there was a time when it is okay to get compulsively obsessed with the happenings of your body, now would be it. Feel free to err on the side of stupid, woman. Your husband loves you with everything he has, and you need to honor the fact that his love means that he is properly freaked out. And with good reason. He lost the mother of his children, and it was a nightmare for him. You know how scared he is, how scared all of your loved ones are.  Yes, you are scared too.  We're all a freakin' mess of stress hormones over here.

But being afraid is not a reason to stop being kind. So you need to buck up and call the doctor when weird things happen, like yesterday when your blood pressure dropped to 77/50 and you kept having to sit down so you wouldn't pass out. That's just not normal, hun.

Listen, if there ever was a time when it was okay to be a whining, compulsive, "doctor's number on speed dial" pain in the ass kind of person, now is it.

You know, he could just say, "Screw this!" and call the doctor himself. He's not doing that, though.  He's trusting you.  Honor that trust and make the call if you need to.

Still friends? Loveyameanit.
My Zimbio