Sunday, June 12, 2016

Almost there...

Tomorrow morning I am going into the hospital overnight so that I can have the last three treatments of internal radiation, or brachytherapy.  It will be a repeat of the stay that I had last week, with a few tweaks and changes to help improve my experience and pain levels.  Dr. Bradford, oncologist extraordinaire, wants me to have an epidural this time, for better pain relief. I really struggled with pain last week, despite having access to powerful pain meds with a pump that I pushed every time the little green light gave me permission to.

The apparatus that was placed inside me, through my cervix and into my uterus as well as to either side of my cervix, is called a tandem and ovoids, and it was packed tightly in there with, well, some kind of packing material. Gauze maybe? I didn't get a look at it, although when I was brought to my room after the surgery to implant it, my nurse, a sweet, kind young man, offered to check it out for me and let me know what was going on down there. He had never had a patient who was undergoing brachytherapy and since we were both curious, I took him up on his offer. Because nothing cures any modesty issues one might have about one's lady bits like having some kind of lady bit cancer.  Every body and their brother have been down there, and the focus is on what might be found in there, not so much on the fact that someone is actually down there in the first place.

Anyway, the tandem and ovoids and packing material caused a tremendous amount of pain. The catheter was a misery and having to lay flat on my back for two days (to avoid displacing the tandem and ovoids) caused constant painful muscle spasms in my lower back. Hence the epidural suggestion.  I've been on powerful opioids since I came home, and am still struggling with pain and weakness.  This procedure enables doctors to treat Mutant with high dose radiation, and to place the radiation in direct contact with the tumor.  It's brilliant stuff, but it just requires time for recovery. I had hoped to feel better before I had to go in again, but I am also eager to finish Mutant off.

I have to say, with no exceptions, the people who took care of me were amazing, compassionate, nurturing, and attentive.  From the young cutie nurse who described my nether regions to me and then made me a longed-for cup of tea, to the doctors who clothed their ninja cancer fighting skills with gentleness and humor.  Kindness covers a multitude of miseries.  Then there was Brian, my own personal Superman.  I am deeply grateful for every blessing God has provided in these hard days, and especially so for Brian.  I keep saying that because time isn't an issue for God, He is walking on my future path as surely as He is with me in the present. He knows and exists in my coming days, and has prepared the way.  Brian and I are a huge part of God's graceful provision for these days, and I am so grateful.

So I'm going back in tomorrow.  I'm not thrilled, but I am a little relieved that we've reached the end.  I am looking forward to a cancer-free diagnosis.  Which doesn't mean that I won't be seeing cancer in every ache and pain, every bump and bruise, every cramp and grumble. I may have to encourage my family doctor to load up on "it's not cancer" stickers for when I visit her with bursitis and hangnails. I've already got a few moles that I want her to check out.  I don't think I'll ever be free from the possibility of cancer. After all, that's why I'll be going for check ups every three months for life.  We'll always be looking for it. It may come back.  My relative youth means it is probable that I'll have to deal with it again.  But that's not today, is it? And today I'm not feeling great but I am content and happy. I am looking forward to feeling better, stronger. I have flowers, herbs to plant and a graduation party to help plan. A summer to enjoy. A gorgeous little pup to walk.  A God to serve and a life to live.

Just a thought.

Monday, May 23, 2016

Mutant's Imminent Demise

I've been working on another "random thoughts" blog post, tentatively entitled "Daily Diarrhea, My New Normal," or possibly "How Cancer turned Me into a Potty Mouth." Fortunately for us all, I received a call from my oncologist, the lovely Dr. Bradford. She informed me that Mutant has shrunk considerably, even more than she had anticipated. Yay! I felt positively giddy as I thanked her profusely, kind of almost listened to what she was saying about the next step of my treatment, and then rushed about telling everyone my good news. It was a happy day.

I'm still excited. I really am. Reality has a way of moving in and turning a happy dance into a not-as-much-fun-but-totally-necessary march forward, though.  Some serious battles have been won but the war continues. Last week Brian and I met with my radiologist, Dr. Moni, to discuss step two, internal radiation. 

While surgery is still an option, it looks like it may not be necessary, at least not now.  Because my cancer had spread outside of my uterus, surgery would have to be more extensive than a regular hysterectomy. The risks of damage and poor healing from surgery on a previously radiated area are higher than normal, and includes the increased possibility of fistulas forming. Don't know what a fistula is? Neither did I. Google it.


The internal radiation is not for that faint of heart, either.  It will require two hospital stays of a night and two days each. I'll arrive early in the morning and head into an operating room where I will be given general anesthetic. Bless.  Once out, a foley catheter will be inserted into my bladder, my cervix will be dilated, and a three pronged tube will be placed inside me, with the center tube going into my uterus, and the two outer tubes resting on either side of my cervix.  The opening to the tube will be left hanging outside of my body. This is the radiation deliver system.  Once I am awake and ready to go, I will have an MRI to make sure that everything is in the right place, and then I'll have the first treatment.  Radiation will be applied through the tubes directly to the cancerous area. This is a simple twenty minute procedure. The actual treatment is not supposed to be painful but the whole tube/catheter thing will require pain meds, which will be in the form of a pump that I will be able to control. Again, bless. 

I'll have three treatments, one on day one, two the next day. Then once everything is working again, I'll go home to recover. I'll start the whole thing again a week later. Between treatments, in the hospital, I won't be allowed to get up, hence the foley catheter. My head will be raised a bit and I can bend my knees, but I have to remain fairly still so that the tubes don't change position too much.  We don't want to accidentally deliver a large dose of radiation to the wrong bits now, do we? 

Hearing the details of this new step had a sobering effect on me.  This is going to be hard.  Brian has arranged to be there with me as much as he's allowed, and I completely trust my doctors. Happily, Dr. Moni's nurse, Chris, is going to be my nurse during both my stays.  She is a wonderful lady, and such a momma.  There are certain times in our lives when we feel the need for a momma, and these past months have been like that for me.  Between Brian, my friends Sandy and Cathy and my daughter, Grace, I feel so taken care of.  The last time I saw Dr. Moni, Chris hugged me, kissed the top of my head and called me kiddo. I melted. It's that added bit of "I got this" that mommas have when taking care of their kids. I'm not going to over think it, I just know I need that and am grateful that during my treatments, she'll be there.

I've spent a lot of time lately, thinking about how to describe the role that God has played in all this. I am falling deeper and deeper in love with Him every day, because of His care for me.  Kind of like I am with Brian, as he cares for me. Of course there are questions. God could heal me. Brian can't, although if ice cream healed cancer, he'd have me all better months ago.  I don't know why, or even if there is a why. Stuff happens. Hard stuff.

I do know that because of God, when my outer life gets really difficult, my inner life, my ability to love, to be patient, to empathize with others, to trust, to open myself, to simply be, gets sweeter.  Easier. More natural.  Every day for years now I've prayed for more love, to love with Jesus' love.  Passionately.  Extravagantly. Unconditionally. Dangerously. Is this my answer? And if it is, is that okay? For me, right now, I think it is. There was a time in my life where my emotional life was much more wrecked than it is now, over much less. I suffered more from lesser difficulties. It's not unusual for someone who has been diagnosed with cancer to be asking God why. I asked Him a few times myself. And then, reality hit. I was asking the Almighty God, who's Spirit dwells within me, in this earthen vessel.  Emmanuel. God with us. This is a thought that I find delightfully distracting.  Why does this body have cancer? How about, how does the God of the Universe make His home in this body, this mind, this spirit?

There is so much that I don't know. Why I have cancer is one of those things.  And when these treatments suddenly bring on menopause, I may have more questions and less patience.  For now, though, God is my shelter, my helper, my counselor, my friend, my Savior and my hope.  And I'm okay.

Just a thought.

Wednesday, May 11, 2016

Last Thursday was my final external radiation treatment. Brian and I celebrated by going out to supper on Saturday night. It had been a while since we had gone on a date together, just to relax and be together.  I even put make up on.  We ate and drank and talked about things other than our kids and my cancer.  We even flirted, which, to be honest, isn't that much of a surprise since we flirt a lot. Brian actually came on to me the day we met my oncologist for the first time.  In her office. While I waited under a sheet, to be examined. And I flirted back. It's what we do.

I'd love to say that I've been healing and gaining energy since my last treatment, but that's not the way radiation works. It's the gift that keeps on giving. Which sucks for me, but it also sucks for Mutant so I'm okay with it. I am grateful to have tolerated the treatments well.  I didn't have any skin damage, and my IC (interstitial cystitis )  symptoms have been mild. The radiation caused bladder irritation and diarrhea which is now the new normal until things start healing in there, the fatigue is a force to be reckoned with, and there was a bit of emotional upheaval while my family adapted to my being out of commission and I learned to take care of myself.  Grace was a God-send. When I was moaning about how I was going to be able to do everything once I became really ill, she calmly reminded me that I wasn't going to be able to do everything. When anyone else is sick, they don't do anything, she said. So when you are sick, you don't do anything you can't do.  Which led to a very proud momma moment. When did she become so grown up?

Mutant has shrunk quite a bit, which is a good thing.  I had a MRI this week to see exactly what is happening in there.  The next step is internal radiation.  I meet with my radiologist next week to discuss how we are going to proceed.  I am hoping that we will be able to do five treatments in two days with a night spent in the hospital.  Apparently the internal radiation for uterine cancer will be easier on the  bladder and bowels, but murder on the lady bits. In any case, I am hoping that it will spell the end for Mutant.  If not, surgery is the third step, but I'd really like to avoid that.  Because the cancer had spread to my cervix, it wouldn't be a simple hysterectomy, and surgery in a radiated area can cause all kinds of miserable side effects. Like fistulas. Google it. Yikes!

Sunday, May 1, 2016

Some random thoughts on the last month...

Ahhhh, I finally have my laptop back from the shop, where it went to be de-buggified.  Stupid viruses. So much has happened, I'm just four treatments away from the end of the external radiation. It's been a rough ride, but also a learning experience and a time of great blessings. I wasn't really sure how to sum it all up, or even if I should try to sum it up at all.  What I've decided to do is to just record, at random, the things that come to mind when I think of the last three weeks.  It has been an eventful time, even if it does feel like I've spent most of it in bed, wanting to be in bed, daydreaming about being in bed, mournfully leaving my bed, longing for my bed, or crawling back into my bed.

So here we go.

Grace was here. Yay! Grace spent two weeks here in March, and I loved every minute of it.  She was visiting from England, and it was her first visit in a year, which we both decided was too long to go between visits. It was amazing to be with her, we spent every spare moment together. She even sat in bed with me, reading while I took naps.  She was such a help, doing many of the little jobs that tend to fall by the wayside when I get sick.  Like my laundry. It was sweet to see little things done without having to ask, like the cat litter cleaned, things picked up and put away, the kitchen tidied, etc.

We also spent hours talking. The wonderful thing is that, thanks to the internet, there was really no need for "catch up" time.  We talk so often that there really weren't any surprises.  It was the small details of our lives that we needed to share. We checked out each others wardrobes and stuff, sharing all the stories - she got this at a boot sale, this was gorgeous and a steal, this was a Christmas present, these are my new batman jammies, a 1$ Walmart treat, check out this new skirt, I'm using this face cream now, she bought a new toothbrush, I love your make up bag, see how my plants are doing? I was hungry to know the small things, what perfume does she wear now? Where did she get the gorgeous boots? Does she still drink herbal tea? It's really in these seemingly mundane details, the places where we live our daily lives, that we are ourselves. I miss these things, I want to KNOW my child, and to learn what might have changed or evolved in her life, in her self. Through Skype chats and messages I continue to know her heart and mind, her spirit, her loves and dislikes, her successes and failures, her victories and struggles. But how does she take her tea? Does she still love my biscuits? What does her hair smell like?

 It was wonderful to draw closer to her in these ways, and achingly painful to say good bye to her at the end of her visit. Grace suggested that it would be easier on all of us when she left if we had the next visit nailed down, and so the tentative plan is that she and hopefully Darren will come here in the fall, and I will go to England to stay at Poppyland with them for a visit in the Spring. 

I admit that I struggled with her departure.  I felt dull, empty.  Maybe it was the fatigue from the radiation treatments, maybe it was the pain, I felt so sad that I couldn't cry. It was too big. This is our life now, though, isn't it? The joy and anticipation of visits, the deep pain of saying good bye and the constant missing, longing. The bit of me that is not there. The bit of me that is living, thriving, growing, blooming, shining across the pond.

 Needless to say I have informed the other children that under no circumstances is ANYONE allowed to move too far away.  They'll just have to bloom where they're planted and they're going to have to plant themselves close by.  At least, that's the plan, until someone feels the urge to fly and we have to bite our lips, wipe our eyes and wrap them in love for the journey. 

We'll continue this list of randomness next time as well, since I've only just begun.  So much to share, so little time.


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.

Monday, February 29, 2016

About Mutant - a plan is afoot!

Last Thursday I had my first appointment with my gyn-oncologist, Dr. Bradford. I was hoping to learn more about the Mutant (someone suggested I name the cancer, and Mutant seemed as good a name as any) and what the plan was to get rid of it.  During an internal examination, the Mutant started bleeding profusely.  I had been bleeding to some extent, daily, for two weeks and without realizing it, I had also having symptoms of anemia;  fatigue, weakness, dizziness, dropping blood pressure, etc. Dr. Bradford decided to admit me into the hospital to watch the bleeding, because my blood count was already low and the bleeding would make it worse. I think she was also concerned that I might hemorrhage.  I was also experiencing some pain, which was fairly intense. I stayed in the hospital overnight, and by late the next afternoon the bleeding had subsided to spotting and I was released.

The initial biopsy had indicated that Mutant was low-grade, which indicates that it is unlikely to spread. But when Dr. Bradford did the examination, she could see that it had made some significant changes since the biopsy two weeks before, and that it may involve my cervix as well. I had an MRI done while I was in the hospital and it showed that the uterine cancer was stage two, which essentially means it has spread to my cervix, but from what they can tell, not beyond.

My next appointment with Dr. Bradford will be to discuss treatment options.  I really like Dr. Bradford. She is sweet and compassionate, and smart.  I felt taken care of, which is important for me, because I have a tendency to slip into caregiver mode at the slightest sign of need.  Especially in times of stress.

Every day when Grace messages me and asks "How are you?" I have to fight the immediate temptation to divert her attention by answering, "I'm fine, how are YOU?" I'm learning to answer honestly, and to trust her ability and willingness to struggle though this along with me. That applies to most of my loved ones, even Brian.

The focus for now is to rest and do whatever I can to keep from bleeding again.  With rest and gentle activity I seem to be doing okay.  I've been thinking of the bleeding as menstrual bleeding, which is inconvenient but not too troublesome. In fact, what is happening is that Mutant is bleeding, the miserable sop, and that is not a good thing, especially when it goes on for weeks.  Oops.

One of the things that I have to get used to is the idea of pain as a signal that something is dangerously wrong. I live with chronic pain, which means I have conditioned myself not to react to it. If my IC bladder pain is intense, it may need to be coped with, but it isn't dangerous.  When Mutant hurts, even a bit, it's a different thing altogether.

I'm still not sure how I am doing.  I find myself wanting to blurt out, "I have cancer!" at random times. Like when a waitress asks if I want dessert.  Or a telemarketer offers me a free Bahamian cruise.  Brian asked me to do his laundry the day after we found out, and I whined at him, "Really? I have CANCER and you want me to do your LAUNDRY?!" He grinned at me and said, "Yup." And then we laughed. Ah, good times.

Of course I am afraid.  I read that radiation treatments on the pelvic area can burn the lining of the bladder. I was, like, "Ahhhhhhh!" What lining of my bladder? It's already compromised! In fact, the idea of radiation treatments now has caused so much stress that I keep forgetting the word "radiation."  Seriously. It slips from my mind, and I keep needing someone else to fill it in for me.

I'm okay with that, though.  I am surrounded by loving, patient people, and I feel cared for and nurtured.  I feel scared and safe, in pain and comforted and so very loved.  A plan is slowly coming together to deal with Mutant. For today, I am okay. And that means a lot.

Just a thought.

Monday, February 22, 2016

A word of encouragement for all the beautiful "Burkies" in my life

So, what exactly is a "Burkie"?

Grace and I spent the past week at a family Christian camp in Burke, N.Y.  The camp is called Burke Camp. Which makes sense. And the campers? Burkies.

What can I say? It works for us. Plus, it's fun to say.


Burke Camp is an amazing place, a small, loving community in a gorgeous, rugged setting. Yes, rugged. Because having to walk 2 minutes to the bathroom in the middle of the night counts as roughing it in my books.

Burke Camp is very much a spiritual retreat for most of its campers.  There are Bible studies and evening services with youth and adult evangelists, prayer walks and activities that serve to teach and encourage our faith.  What I find most lovely about Burke Camp is that ministry happens all over the camp, at all times of the day, and by all the campers.  People are encouraged and taken care of, prayed over and with, counseled and listened to, hugged and loved in a million different ways.  This year, my spirit was ministered to by a baby, who let me hold her and love on her in complete trust, a teen-age boy who came to me after a service and offered a word of encouragement from God, the evangelist who listened and counseled me, and the youth pastor who, in praying for me at the altar after one evening service, spoke two scripture verses over me that God had given to me many, many years ago.  The spiritual work that happens at Burke Camp is powerful and life changing, and very, very real.

One of the concerns that sometimes troubles campers as they leave the grounds for the last time at the end of camp is how to continue on with the work that has started at Burke.  When God has given us guidance and healing in our relationships, when we have been encouraged in our work and families, when we have recognized and dealt with sinful attitudes and behaviours that have been wreaking havoc in our lives,  how do we keep moving forward once we hit the real world?

The last day of camp was July 20th, and that morning as I read my devotion from Oswald Chambers "My Utmost for His Highest", I had to smile to myself as God placed the answer before me.

Isaiah 40:31 says, "those who hope in  the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Oswald Chambers writes, "Having the reality of God's presence is not dependent on our being in a particular circumstance or place, but is only dependent on our determination to keep the Lord before us continually. Our problems arise when we refuse to place our trust in the reality of His presence."

So often, as we leave a place or time of intense spiritual growth and learning, we come away with questions. What do I do now?  How do I keep it going? How can I avoid messing this up?  The common denominator in all of these inquiries is "I".  The problem is, when it comes to spiritual things, "I" didn't do the work in the first place, so "I" am not going to be able to keep it up. What I can do is place myself in the hands of the One who has worked in me and changed my heart.  I can "show up." I can be. And He will do the rest.

What does this look like, practically?  It looks like life. It looks like obeying what we already know while living out our lives. It's obedience in the mundane.   Washing dishes and changing the oil in the car, buying groceries and going to meetings, taxiing kids to piano lessons and jogging in the park, walking the dog and changing the cat litter, making peanut butter sandwiches and steaks on the grill, brushing our teeth and changing our socks. It's about living, and doing it all with God. Living in the love that we have now, for God and others, and believing that as we walk through our lives, God is changing our hearts and giving us more of Himself, more of His love.  Have we messed up? We apologize, ask forgiveness and trust that God is working.

Philippians 1:6 says that God, who began the good work in us, will carry it on to completion until the day of Christ Jesus.  We can trust Him.

Walking with God is about talking to Him and listening to Him, reading the Bible and obeying what He is showing us, speaking words of life and not death and lots of asking when we fail.  Basically, it's trusting in the reality of God's Presence in our lives, and living in the truth of our intimate relationship with Him. 

Oh, and having fun.  Can't forget the having fun part.

After all, we are Burkies.

Of Mutants and Cockroaches and Being Okay

In the four days since I found out about my cancer, I have watched a three part Ken Burn's documentary called "Cancer, the Emperor of Maladies,"  a Canadian documentary called "A Day without Cancer," and I'm in the middle of 'The Bucket List," a movie that I've seen before and enjoyed about two men with end stage cancer who chose to spend their last days fulfilling their bucket lists.  I've also spent so much time googling uterine/endometrial cancer that Google has started asking me, "Are you sure you want to see this AGAIN?"

Everyone deals with this stuff differently, I think.  What I want to do is talk about it incessantly, but that's not always possible.  While talking about it may decrease my anxiety, I have seen that it increases the anxiety for others, which is the last thing that I want to do.  So I listen to others talking about it on Netflix.

The problem is that the enemy is invisible.  Although I have to admit, calling cancer "the enemy" feels weird because it's my own mutated cells.  The freaking little mutants.  Wouldn't it be nice if life was like a movie and mutated cells gave super powers instead of being death nuggets? Like spidey senses? Or the ability to fly? Or even better, the ability to stalk computer savvy teens without them knowing it?

But alas, my mutated cells are of the garden variety, the kind that grow in weird places just because and make a nuisance  of themselves. Or worse.

It's kind of like discovering that while you were out, someone came into your house and released 5 000 000 cockroaches in it.  Hours ago.  You stand in your living room, your skin crawling, the hair on the back of your neck bristling. You can't see them.  Not even one. But they're there. Doing whatever evil, disgusting things cockroaches do.  You want to run out the door screaming like a banshee, never to return. But this is your house! Your next impulse is to burn it to the ground. But again, your house. You have to live here.  You do a little ninja dance of horror, stomping on invisible bugs, scratching your head and arms compulsively, and cringing as you think of the places they might be. In your underwear drawer! Your kitchen cupboards! THE BABY'S ROOM!!!

Eventually, when you are ready, you take a deep breath and straighten your shoulders. It will take a long time. It will be hard, really, really hard. You will lose things, items that you treasure but just can't keep anymore.  You'll have to get used to the crawly skin feeling because it's not going away any time soon. You'll sweat and hurt and cry and rage and talk about torching the house a lot before you're done, but one day, you will be done.

I stand in the mirror, staring at my house. Frowning. I know where my mutants began, where they were released, but have they had a chance to check out other rooms? I run my fingers through my hair. Damn. I don't want to lose my hair. I really, really don't want to lose my hair. I'm not going to look good bald.  Although, my mad scientist eyebrows could use a good thinning. Of course, losing my hair, even having chemotherapy at all is not a sure thing for me. I may not need it, if the mutants haven't spread. So that's something.

I haven't gotten to the ninja dance of horror yet. I'll probably catch Schmitty licking my toast some morning and go ballistic. Should I warn my family, or let them be as surprised as I will be?

All I know is that it's going to be okay.  Or more accurately, I will be okay with whatever it is. Because God. And my people. And cats. And sun and Spring and music and love.

Just a thought.

Sunday, February 21, 2016

Oh dear...

Last week I had an uterine biopsy. It was a routine procedure, my periods have been getting very irregular and I've been bleeding or spotting almost daily.  I've also been having increasing pelvic pain that, as time has gone by, I began to recognize as not coming from my IC bladder. In preparation for a uterine ablation, a procedure that would shut down my menstrual cycle for good, the biopsy would just make sure everything was okay in there.

After the biopsy was completed, a quick procedure in my doctor's office, I was told that the results would take two weeks to come in, and that I would be given an appointment in two weeks to discuss them.

On Tuesday, less than a week after the biopsy, I received a call from my gynecologist's office.  The results had come in and my doctor wanted to see me right away. The receptionist asked if I could come in that morning, but I couldn't, so I made an appointment for the next day.

Then the fear hit. Why would they need me to come in sooner? If it's for biopsy results, there can only be one reason. Two if you include the possibility of a very insensitive gynecologist who forgot that he asked me to make an appointment in two weeks. And a receptionist who doesn't have a clue. Which doesn't describe Dr. Blake or his practice at all.

To be honest, the transcript of my brain for the first hour after the phone call reads like this - "Crap on a cracker! Crap on a cracker! Crap on a cracker!"

It turns out that crap on a cracker was an appropriate response. Brian and I went to see Dr. Blake on Wednesday and he told us that I have uterine cancer. I have cancer. That is a very odd sentence to write. It is impossibly simple, and yet indicative of a huge event, a life changing reality. I have cancer.

Dr. Blake is a sweet man, simple, straight-forward and kind. He reassured us that if I was to have any cancer, this is the one I'd want. With a very low mortality rate if caught early, I should be fine. Eventually.  After all, it's in a completely disposable organ. I was, like, how soon can we take this sucker out?

I have to admit that I wasn't caught off guard. In the day's time between the call to come in to hear the biopsy results and actually going in, I did a lot of research on uterine cancer. After all, what else could it be? I wanted to know as much as I could, and when I was told that I had cancer, that information helped me cope. I know that's not the way everyone works, but but it's how I work.

I still don't know much. I have an appointment on Thursday with a gyn-oncologist, and I'll know more then.  We'll know more then. Brian is an absolute rock.  The news hit him hard, as it would me if he was the one with cancer.  I feel like he is putting his anxious energy into taking care of me, in any way he can.  While my mind feels pretty calm about the whole thing, my body is reacting strongly to the diagnosis. I don't know whether I am in emotional denial or whether I'm at peace with it all, but physically I'm a trembling mess. Literally. I feel like I am perpetually shaking inside. Brian understands the way my body reacts to stress, and has been wonderful about helping me to physically relax. I feel like he is engulfing me with warmth and care, enabling me to melt into him and relax. I am so grateful.

I'm pretty sure I am going to be writing quite a bit about this in the future.  One of my best coping mechanisms is working out my difficult times "on paper," so to speak. I believe there is hope in shared experiences, the understanding that we are not alone in our trials, that we cannot underestimate the power of our stories.

It's time, now, to take a deep, trembling breath and step out onto the path, into the unknown future.  I may not know what lies on this path, but I know Who's walking with me, The Spirit of God in me, around me, behind and before me.

Just a thought.

My Zimbio