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.

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.


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.

Wednesday, December 23, 2015

More about "Someday."


Yesterday morning I was poking around in my Facebook memories, and I found a blog post that I wrote three years ago, called "'Someday' is waiting for us!" I wrote this at a time when I was feeling very alone and vulnerable, and deeply insecure.  I wrote about what I was feeling from the perspective of a disciple of Jesus Christ, as one who is being "transformed in His image." (2Cor3:18) I believe that being a follower of Jesus means change, not by my own feeble efforts but by my submission to the trans-formative power of God.  In the blog post of three years ago, I wrote that change comes, not by pursuing it, but by pursuing loving relationships with God and others.  I am in love with God, and because of this, I pursue Him. I talk to Him in prayer because I can't not talk to Him. I'd miss Him. I read the scriptures because He is there, and He speaks to me through them. I want to hear from Him. I strive to obey Him because I trust Him and His desires for me, and I believe that He knows the way to wholeness, to healthy, loving relationships with Him, with others and with myself.

Because of all this, someday is a very real place to me.  I realize, though, that in the social media world of sound bite pseudo-wisdom, looking forward to "someday" is not encouraged.  We are to live for today, rest in the moment, breathe, experience every moment with eyes wide open. And I agree. I am a "live in the moment" kind of person. I stop and smell the roses. And the cookies. And the autumn leaves. I am intentional about listening to my children, knowing full well that these days of adolescence and young adulthood will pass quickly. I practice yoga, and I know how to breathe out stress, to breathe in the calm.

I am convinced, though, of the importance of the somedays. Parenting teenagers has taught me this.  One of the most important words teens need to hear from adults is "someday."  Living is hard, and it is especially hard for our young people.  Teens feel things deeply. Emotions come fast and loud for them.  They feel the expectations of their parents, teachers, peers, society, expectations which are often conflicting.  They need to know that, whatever difficult thing they are feeling or experiencing, they will not always feel like they do in the moment.  Life does get better. Their emotions will calm, and they will become better at the whole "living" thing.  Someday is hopeful for teens, because it challenges the despair of strong, painful emotions that threaten to stay forever.

The promise of someday is not necessarily about different circumstances, though.  Stuff happens. Stuff will always happen.  Heartaches, jobs losses, conflicts with friends and loved ones, illness and death...the world can be a scary place.  Even when circumstances do become more favorable, good happenings can lead to new kinds of difficulties. For me, meeting Brian and falling in love was a wonderful thing.  It led to marriage, three brilliant step children, a new home and family, and a love relationship that is beyond anything that I could have imagined.   It also meant moving away from all of my people. Changing countries.  Lots of goodbyes. Kissing my sweet daughter good-bye as she headed off on her own adventure in England. Letting go.

 Within my happiness and security and peace, there is a heaviness.  In my life, someday meant changed circumstances, but more importantly, it meant a changed me. God has been strengthening and empowering me to be whole in the face of my losses, and I understand that He has done that by calling me to deeply and sacrificially love those that He has given me here in Massachusetts.  How do I nurse my wounded heart when I miss my daughter so much, it physically hurts?  By taking care of my father-in-law, or loving my step kids, or serving my husband.  Loving others does not replace Grace in my life.  Our hurts and losses are too real to simply be replaced.  Love does heal, though. It is powerful stuff.  God's love, poured through us onto others is a glory, blessing us as He blesses those around us.

When someday means, someday when I'm thin, or someday when I win the lottery, or someday when the kids leave the house, or someday when my dream job opens up, or someday when I meet Mr. or Mrs. Right, looking for someday will just hold us back.  There is too much living to be done, and too little time.

Still, looking forward to a "someday" that we can start moving towards right this minute is a blessing. If I reach out to God, if I choose to trust in His trans-formative work in me, if I remember how far He has already brought me, if I choose love over fear in the circumstance that is right in front of me now, someday I am going to be stronger, steadier, more secure, more loving. More whole.


To me, that makes "someday" a day worth waiting for!


Friday, December 18, 2015

Here's to being back...

Ah, the age old question - how to write a post in a blog that has been silent for ten months. Okay, maybe it's not an age-old question, but I've been thinking about it for ages, so...same thing. It has been an eventful ten months.  I spent the summer in Franklin Centre, Quebec, with my dearest friend and her family. It was a wonderful opportunity to spend time with her before I was to move six hours away, to Massachusetts. Which I did, at the end of August. I married my sweet Brian, became a step mother to three brilliant young people, and I have settled into my new home where we live with Brian's parents, Allen and Judy.  I spent hours Skyping with Grace in England, enjoying her stories about work as a receptionist at a holiday park. I started going to a new church, Bethany Bible Chapel. At least it's new to me.  Brian and his family have been going there for quite a while.

So much has happened. There have been many changes, losses, gains, feelings.  So much living.  Some tears. A lot of laughter.  A crazy amount of hormones, thanks to the perfect storm of a house full of teenagers and peri-menopausal me.  Still, we've all survived and have been melding into a comfortable, weird, funny, loud, moody, messy, loving family.

I'm settled now, and I'm back.  With thoughts.  And pictures. And feels, and ideas, and questions, and confidence and doubts and stupidities.

It has taken me three days to break the ice and write this post. So, here's to pushing through, to broken ice and being back.

And this picture - just because.




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