Category Archives: Brain Tumor

THAT time of the year

Where winter collides with the strong arms of the prairie.Where the dog days of summer surely hadn’t existed at all. Where we all want to hibernate in our warm dwelling just a few minutes longer while dawn waves an icy hand to the moon.

In my brain, summer never really happened. Really. I have one memory of it. One. Snaggletoothed memory. It was a lovely, lonely day. Someone paid attention to me and took me for a walk. Lovely!Oh wait, another memory is emerging. and another. I guess summer must have existed for 3 days give or take, because that’s what I’ve got.

My memory isn’t what it used to be but neither is it worse than it’s been.

The other day I had a few elusive breaths of “normalcy” where my world seemed to tilt and shift into what I felt was “normal”. It was breathtaking and oh so short. I wished it would hold on for a few moments but then it was back. The “fog”

I hope yhose moments cvome back. That would be cool.

 

 

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Hairballs

I have sat to blog often but my brain does not cooperate with my fingers. I used to be able to type like the wind but I find my fingers ploddingly clumsy and I get frustrated between letter punching. So I peek out of my chrysalis just long enough to see that the world hasn’t changed a whole lot since peeking out a while back and I go back to the grinding and knock-kneed journey my fingers must make across the keyboard on the way to a freshly pressed blog post.

So, pull out a cup of hot tea and tell me how you are doing. I’m curious. Like a cat sniffing below the supper table, I am wondering at the stories your lives are making.

My story hasn’t changed much and you know what? For that I am mostly grateful. I still have cancer, I still have four energetic and rather impetuous children who make me laugh. I still trip over imaginary objects. I still have a back ache. After all that and I tend to think I lead a boring life. But I don’t, not really.

As does the hair ball stuck to my sock, so my story takes turns and twists that keep me dizzy. A few weeks back I found myself at the hospital with pain my Dr wanted to figure out. they admitted me and ran a CAT scan. Oh how I dislike IV’s and machines that make loud clackety clacks while I am trying to take a CAT nap. I have “hard poke’ veins that make even seasoned veteerans run crying from the room. Seen it happen. The ER Dr. thought he saw swelling and ordered me to take decsamethasone. Its a nasty steroid that makes me swell all over my body and has rendered me helpless to care for myself. Ironically it takeeees the swelling off my brain, which is good. I did not want to be on it again. The next two days saw me in an MRI which showed no swelling and no new growth ! We were very happy with those results. Since my headache improved so drastically with the med they kept me on it. It will be in shott bursts that will hopefuly keep the nasty side effects to a minimum.

This medicine was also responsible for some wild hallucinations on my birthday. Not the fun type hallucinations either. “Happy birthday to me….I’m as crazy as can be….la la la”

Some day I’ll tell you about it….in my book. that I’m writing….one day soon…..really!

The Beautiful Wait

Tick, Tock, Tick, Tock….

And as time unfolds by the second, we wait.

How does one wait graciously, peacefully, beautifully?

I am not positive. I don’t think I’ve arrived yet.

All I know is that I must. I must wait.

In the meantime, I try not to think of what is growing in my brain. I try to think of this time as an opportunity to soak in the beauty of the moments. Trust me, there have been UGLY moments in this wait.

NORMAL moments. The regular type I-am-waiting-for-a-surgery-that-could-prolong-change-or-shorten-my-life-and-family-life-and-regular-life-just-goes-on moments.

We aren’t sure whether to make plans or not. We live every day, day to day.

So life goes on like normal and yet not normal at all.

And we wait.

In the meantime, the waiting can be beautiful because if I wasn’t waiting I’d be recovering or in treatment and that will be the hard. So I take these moments as beautiful or ugly as they may be and just live. Living is good.

It’s ok to be awkward

I’ve gone through loss a few times in my life. I’ve seen many go through loss, just being a wife of a pastor. There have been times I didn’t know what to say. Times I said the completely wrong thing. Times someone has said something insensitive.

It’s ok to feel awkward. It’s NORMAL.

I have had some say that they just don’t know what to say. That’s OK!!

One of my dear “neighbors” saw me for the first time in months and said that she was sorry but she just didn’t know how to make that first move. She had lost someone very dear to something very similar….so it was hard. We hugged and it was ok. I have been so busy doing what we’re doing that I haven’t noticed people hiding in their houses. Honestly, it’s winter in Canada…every winter is the same. We all hide until spring comes. Then we all burst out of our houses and into the sunshine. Nothing unusual about that.

So, you feel shy…like not saying the “wrong” thing or just want to run when you see one of us coming.

It gets easier.

I’m not a scary monster. LOL! Ok, so I can be.

If you know me at all, you know that I love being goofy. I like to act like nothing is wrong. Denial. I like it. I can be good at it.

You don’t have to say anything profound or wise. You can just be you. You and me. Whatever we had before is still the same. I’m still the same gal. Tell me I look pretty. Can’t go wrong there 🙂

Sure, there is the big scary thing in my head and an impressive scar if you want to look. I like showing it off. It’s cool.

On the other hand, if you can’t stand the thought of what’s going on in my head, that’s ok. I have a lot of other things going on and so do you. Let’s talk about that.

It’s ok to be awkward and unsure. I’ve been there. It gets easier after the first step. By the way, if you’ve been awkward, I haven’t noticed. Unless you said something.

 

Treatment plan, how to help

We don’t have a nailed down treatment plan yet, as of today. We know more than we did yesterday but until we hear what the Cross Cancer has to say, we are somewhat in the dark as to how this may play out.

First, we know that debulking the tumor is risky and yet seems that the professionals think it’s worth the risk. My tumor is in a bad place. It is around some major arteries that could complicate things in a deadly sort of way if surgery is a plan. The drs said they can go around them, but it’s still a risk. Also, major functions are a part of the right temporal lobe. The good news is that my dr wants to do some sort of cool MRI that would locate where some of those functions are in relation to the tumor. They would do an MRI and have me do certain tasks like read or move to locate where my language and motor skills are lighting up.

The Neurosurgeon also said that radiation will be a definite part of the plan. Then the nurse said that Radiation and Chemo are standard. No details about how much or when but that they are standard protocol.

The goal is to extend my life by however many months or years that they can with doing as little damage to my functions as possible. Nothing is guaranteed. Every step would be in the hands of God. Every step with risks. But then, living with a brain tumor is risky business.

I am committed to getting as healthy as I can through diet and exercise before and after treatments and hope to use that as a holistic approach to my healing. I know that everyone has opinions on what they would do, natural remedies that they’ve heard testimonies or experienced themselves. I am planning to see a naturopath who has dealt with cancer but I do not plan on making it the only avenue I take. I want to do this with a balance of conventional and holistic treatments as possible.

There is a lot of risk and many decisions that must be made in the next week to two. Pray for wisdom. Thank you for doing this all along. We have felt peace through much of it. The reality of what we are facing is daunting and has caused some loss of sleep and lots of circles going around in my head.

I look forward to getting into it. Bringing on the fight. I look forward to seeing my dreams at the end of the treatments happen. I know there could be many bumps in the road, many times to exercise deep breathing.Changes of plans…Can’t think of them all. I have dreams for at the end of our treatment plan. I think they are from God. They are exciting dreams. Crazy dreams.

In the meantime, I may need some help. Helping me with you coming to kick my butt out of bed to get some exercise. Help with healthy meals in the midst of treatment. Maybe someone dropping by to juice me a vat of healthy juice. I may need you to work past the grouchy “I don’t want to do this”. and tell me “this is going to help you live longer so get out of bed”. I may need friends to come and read stories while I can’t read or make playlists and stick them in my head. Opportunities for my kids to be distracted and have some fun…Taking my husband out and doing something with the guys…so much.

Who KNOWS? I know I’m going to need some support that will help me survive.  My family will need you all to help them thrive. I love that there are so many that have expressed interest in helping “In any way”. Those are some specific ways. When treatment starts happening we’ll need you as a part of my treatment plan. I feel weird saying that. But I have a friend ready to take on the task of organizing it. If you’re interested in kicking my butt out of bed once a week and getting me out there (walking) then let me know. If you are excited to prepare some meals that I can eat and try out a recipe for me, then let me know. I have some that I want to try. I’m going to be eating much differently.

There are going to be so many opportunities as my parents won’t be here forever. I love them here so much but they have to go home sometime too.

I think I’m looking forward to getting to know some of you better through this. It’s going to get real interesting!

Thank you for being as supportive as you have been. It’s been humbling and amazing!!

Adoption

John 1:12

But to all who did receive him, who believed in his name, he gave the right to become children of God,

Galatians 4:4-6

But when the set time had fully come, God sent his Son, born of a woman, born under the law, to redeem those under the law, that we might receive adoption to sonship. Because you are his sons, God sent the Spirit of his Son into our hearts, the Spirit who calls out, “Abba, Father.”

I have a few friends who have been adopted or married a child who found parents through adoption. Some of those children faced the premature death of their parents and left them longing for what they didn’t have. In my mind, I saw it as such a tragedy. More tragic, somehow, than a child who was born into a family losing a parent. Sounds strange.  That a child would have to grieve twice. That they might think “Why did God bring me to this family only to find myself mother/fatherless?” Again.

I have thought those thoughts. How sad…

Now we are living in a situation where other people may think the very same thoughts.

How sad that those children went to a family that would go through such trouble.

I hope to live a good many years yet, but the reality is that my lifespan may be a lot shorter than I had hoped.

Now my children may have to grieve twice. Once when they were itty bitties and their first moms were suddenly gone. The warm and safe place where they had grown and had heard her voice was suddenly a loud and strange place without the voice that they had gotten used to. Babies grieve. I’ve seen it. Oh, they are resilient and amazing and our babies bonded to us as their parents fairly quickly. From our perspective they were “ours” right away. But they did grieve.

And then again as older children. At the very least, this is not the fairy tale story that one hopes when you are waiting forever (it seems) to bring your children home.

And yet. And YET…there is another part of the story.

We waited and prayed for our children. We agonized over the desire to hold our babies and love our children. WE had dreams and plans. We wanted a family fiercely. God answered our fervent prayers.

After so many years, we finally held our eldest and KNEW he was made for US. We were waiting all that time for him. It was an insanely beautiful moment. Then again when each of our other kids came home, I knew we were made for each other, as crazy as it all got sometimes. God had put us together as a family.

I am tempted to think, why did God put us together as a family if he knew they would have to go through so much? If he knew they would lose their momma prematurely? He could have put them somewhere else where grief would not be so profoundly difficult.

But he let us be their parents. He let them have us. And we are a family in every way except the common genes that don’t run through our veins. God is at work at a bigger picture for them too. He knew. He KNEW they would be going through this. Whoa. And he let me be their mom anyways. That is big stuff. I have been so very blessed to be their mom. The one who got to rock them to sleep and see them laying on my chest with light and beautiful breaths. I got to clean up a lot of poo and puke. Maybe not glamorous but a part of parenthood. I got to see them off to school for the first time and cry about how they have grown up so much. I’ve gotten to see milestones and growth. God let me be their mom. Wow.

We don’t know why God lets things happen the way they do or if he makes things happen sometimes. We wouldn’t be able to handle seeing the big picture. I know deep, deep down that he is purely GOOD.

Things happen.

Then he creates beauty out of ashes. He makes good come out of everything for those who love him.

I trust Him to continue to take care of their hearts even when I can’t mend the broken hearts that will come because of life. Life can break our hearts. I pray there will be people surrounding them who love them almost as much as we, their parents, do. Friends and family that will hold them, listen to them and carry them when they need to be carried.

I didn’t want them to have to go through all of this. But here we are, going through it together, as a family.

Too much to say – Part 3

I’m going to attempt and put part 1 and part 2 in a final act, of sorts.

Perspective comes in strange ways. Our life has had it’s strangeness…that’s for sure.

Two and a half years ago, we were feeling really good about where our lives were headed, the direction the church was going, confident in relationships and, for the most part, pleased with our decisions in personal life. At the same time, my physical health was going down hill and we didn’t know our way around a stick. Life was good, bad and all sorts of NORMAL…for us. It was a winter I never wanted to repeat. Does that sound confusing? It really was a confusing time of life.

Pivotal moments seemed to line every part of the race of life. Moments like the loss of friendships, the gaining of new ones. God teaching me how to pray more effectively. Showing me that spiritually I had a long way to go. Areas of sin that were blatant and screaming for attention.

God was moving so many parts of the picture our heads spun. He was doing such a deep work of renewal that I felt I would drown at times.

One of the pivotal moments happened on our 20th year anniversary celebration trip to Jamaica. Anxiety was trying to knock on my soul and when I stepped on the plane I chose not to take it with me. I left it, like a bag of dirty clothes outside of the plane. I decided right there that I couldn’t stop anything bad from happening so why take all that baggage with me? If something terrible was going to happen all the worrying in the world would not stop it.

Relief.

Then I went snorkeling.

My brother drowned when I was five. Since then water has had  a certain grip on me. I could swim but didn’t like it. I could put my head under water but it wasn’t fun. Being without breath scared the bejeebers out of me. I had dreams when our oldest was a toddler that he had wandered away from me near water and we couldn’t find him.

When I decided to go snorkeling I knew it would be a test. I looked at everyone else surviving on just a little tube of air. I pumped up my air life vest as fat as it could go and stuck my head under water. It was liberating! I survived! It was a feat of the mind.

Fear. It’s hounded me.

And on that trip I let a lot of it go. It was amazing! I didn’t worry about what to make for supper, whether my kids were ok (because I was 10 hours away and couldn’t do anything anyways) and I didn’t lose any sleep, besides what should be lost on that kind of vacation.

We came back and I set off to train myself to run a 5 km in the fall. I don’t run for any reason. Not even a bear. With a bear you best lay in a ball and stay put. Well, that’s what I’ve heard.

When I started to train I didn’t realize how much of an exercise of the mind it would be. The first time, I jogged for 30 seconds off and on. By the end of the summer I was jogging for 30 min’s straight. Say WHAT? It took a lot of mental grit but God, in his strength, led me through it. So very cool.

I completed the 5 Km and was so excited that I finished that challenge! It changed me forever too. All that time breathing deeply and being in the fresh air. It renewed both my body, my spirit and my mind. It was beautiful!

The winter after that run was when I started the new ladies group. What I didn’t know then was that God had a hand in that too. It created a community I would need through the tough times ahead. It gave me a business that I could be challenged by, in different ways.

You see, what I’m trying to say is that all the threads of my life, of your life are being drawn together in a beautiful pattern. Even now, as we face another monumental challenge, our lives are being woven by the Master Craftsman.

I prayed for God to restore us in many ways. I prayed that he would bring people back…to us… but mostly to Him. He has restored some relationships that I cried over losing. How great is THAT? He is restoring that which has been broken.

He is working in ways that are mysterious and so very amazing. In your life too. You may not see it now. You may not see it in a year. You may never see the beautiful pattern that is being knit together. But have you given it a thought? Have you given HIM a chance? It is a matter of choices. He gives us all that. You get to choose to get better or to get bitter. You make the choice to let anxiety kill you from the inside out. You can let it go. You choose to let him work in the hard places. You get to choose so many things even when things seem out of control.

A lot is out of my control right now. But I get to choose how I react, how I live the rest of my days. He’s given me so much. How about you?

What are the choices you need to make?