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...

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 anything” James 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. 

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.

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.

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.

Anywhooo...

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.

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.