April 24, 2016

I am a widow

I am a widow.

The word doesn’t want to come out of my mouth, but it’s a word my brain keeps playing with.

I keep thinking back over the last 3 weeks. I sat in the hospital next to his bed for more hours than I can count.

Before he was intubated, I would lay next to him and beg him to just breathe.

Just keep on breathing…

His lungs were destroyed so fast. I am what his doctors call an “excellent patient advocate.” That means I asked questions like my life depended on it… like his life depended on it…

The doctors were very kind and patient and were good at showing me the progressive scans and X-rays of his lungs. I’m no doctor, but even I could see that what was happening was happening very, very fast.

One of the chemotherapy drugs he was given - a lower dose than usual - caused a devastating toxic reaction in his lungs that happens so rarely it’s never been studied. When it does happen, there is only a very small percentage that doesn’t respond to the steroids…

From when the disease began until death was about 10 days.

Ten of the longest, shortest days of my life.

And there was nothing anyone could do.

We said goodbye, just in case. He made the decision to be intubated. I was both thankful that he made that choice so I didn’t have to, and devastated that he chose to. We all knew it was the last chance he had to live, but we also new that chance was only a whisper.

We laid in the hospital bed together, whispering our last words.

We have a little thing we’ve been saying to each other for almost 15 years. He says the first line and then I finish it with my part. I can’t tell you what we say because it’s our secret. But we both knew we were saying it for the last time.

As the doctors and nurses bustled around the room preparing for the intubation, instrumental hymns played from Pandora. I watched the doctor unpack the emergency kits and give orders to the nurse.

My husband and I gazed into each other’s eyes for the last time, and I was asked to sit in a chair away from the bed. I wanted to scream at everyone to leave him alone and to get out. I wanted to scream at my husband to not give up. To not leave me. I wanted to run back over and so he could hold me one last time.

The doctor came over and we had to discuss if they would resuscitate him if it didn’t go well. The decision was made that they would not.

The roughly 48-hours he was intubated there were moments when we could communicate to him. He would nod or shake his head, or give a thumbs up. He tried to write to me a few times, but the only word I was ever able to read from him was, “HURT.”

His lungs continued to deteriorate so quickly. First a hole in one lung, then one in the other. The medical team worked around the clock to try to keep him stable. Friday morning it was apparent that they no longer could. He was likely already suffering brain damage from the low oxygen levels. Because of the lack of oxygen, his heart was also beginning to fail.

There was no more chance. No more hope.

The children arrived around 10 am. Amelia sobbed like a child should never, ever cry when I told them that Papa was going to die. I explained what was going to happen. I reminded them what we believe about the Christian hope we have after death. I wept with them.

We all went into the room and surrounded him with all the love in our hearts. Both our families were there, and my best friend.

The tube came out and he continued to breathe on his own for about an hour. And then, he didn’t.

He slipped quietly into the deep sleep of death as I clung to his side.

My heart. Oh my heart.

I never imagined I could feel so dead inside.

Yet, despite all the sadness and pain, it doesn’t feel dark to me. Instead of what I was expecting - a dark shadow to consume me - I instead find myself wrapped in love and light.

Maybe the darkness is still to come, but for now, I am comforted knowing that my husband can rest until Jesus calls for him to wake up and go to heaven. I am comforted knowing how much love is being poured out for our family. I am comforted by looking into my children’s faces and seeing him live on. I am comforted with the knowledge that he ran his race well, didn’t stop until the end and finished with grace and love.
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March 31, 2016

what cancer taught me

Cancer.

It has a funny way of changing your perspective on life.

It's changed my perspective on life.

Some thoughts on what I've learned:

That lady that cut me off - maybe she just found out her husband has cancer. Maybe she's not being a jerk. Maybe she's having the hardest day of her life.

That lady who, at the cash register at the supermarket, suddenly remembers she needs tomatoes, and the cashier makes everyone in the line wait - well, maybe she's overwhelmed with just finding out her husband has cancer.

And when she bursts our sobbing over the tomatoes, a smile might not seem like it matters, but it does.

And when she goes to pay and all of a sudden can't remember how to count money, maybe she's not just a dumb blonde. 

Those people who seem like they just can't be bothered (returning the shopping cart/parking askew/etc), they seem like they're acting aloof and entitled. But maybe coping with life isn't their best thing at the moment.

People need a little more grace than we give them.

People need a little more understanding and compassion.

I can't say in words the outpouring of love, support, and generosity that has been blanketed around our family the last 3 months.  Utterly indescribable.

What if we looked at people through the lens that our community looks upon our family? We've been invited to cry, yell, scream, vent, and wear PJs to church with no judgement.

I've acted so selfish, said stupid things, and asked so much of my closest friends. Yet it's all been met with so much sympathy.

"You're going through so much, you're allowed to not be your best self."

What if we allowed strangers to not be their best selves either?

What would the world look like?

Sigh.

What I've really learned from cancer is that sometimes bad things happen to everyone. Good and bad. That's not a new thing. God causes the sun and rain to shine and fall on the good and the bad.

It doesn't mean we did something wrong or aren't good enough. It means that we live in a sinful world where people get sick and get hurt.

But we won't always.

We're not our best selves on our best day. None of us. Because what we are isn't what we were created to be.

We are all in need of a little grace.

As I write this, a song is playing on Pandora,  "Grace, grace, God's grace, grace that is greater than all our sins." 

We're all in this hurting world together.

The good and the bad.

We're in it together.
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March 25, 2016

gladness

I sat down to write this (what I'm about to write) earlier this week, but instead a lot of hurt came out. Writing is my therapy and so I guess I needed to write about my hurts.

But today, no hurts. Today I want to write about my gladness.

I'm so, so very glad. Right down to my toes.

People have been so generous to our family.

We were given a free house to live in during the chemo treatment. It's the nicest house we've ever lived in. And it's on a lake. And peace floats throughout the house like a light cloud in a spring breeze.

Our souls are refreshed here.

We were also the blessed recipients of generosity of funds.

I wanted to give a report for some of these funds:

Gas. Every week we drive to Seattle and back.
Housing. The cancer house is not a cheap place to stay. We are blessed to be able to stay here on treatment days.
Chocolate. I didn't like chocolate before I got pregnant. Now, it's my lifeblood. (Theo and Alter Ego brands are my favorite. If you were wondering.)
Food. We are not eating as cheap as we used to. Traveling means eating out, convenience foods, etc.
Clothes. We broke down and resigned ourselves to the fact that we aren't going back to Guyana before winter is over (we still have snow around the lake). Todd and I got coats when we got to Washington. Samuel and I needed jeans. We're not naked. Thank you.
Chai. Not a lot of sleep and lots of driving. I can't bring myself to drink coffee but chai tea is my BFF.
Apple juice. Seriously, it's all Todd wants to drink.

Despite the generosity from all directions, people are still asking what we need. Our answer is still usually, "We don't know."

Actually... there is something we need....

But it's kind of a secret. Do you want to know?

Ok, so it's not actually a secret, but it's something that's been rolling around in my brain for quite some time.

We need a vacation.

Our little family, though we have traveled to some amazing places to do mission work, has never been on a family vacation.

We've never seen the Grand Canyon.
We've never been to a national park.
We've never - gasp - been to Disney Land.

And we happen to have a period of time after chemo and before surgery that is three weeks long.

Can you guess what we're doing in those 3 weeks?

Yes, world, we're finally, after nearly 13 years of marriage and almost 7 years of parenthood, going on vacation!

We have been tossing ideas around. We love the ocean. We loved the idea of a cabin in the woods. We thought about a camping/road trip (but we don't want to because we're sick of going and just want to be somewhere. Also, we don't have camping gear.). My dream vacation is to a dude ranch. Amelia's vote is an African safari (I'm thinking logistically and economically this will not be what we end up doing).

What should we do?

Here are our must-haves for a vacay:
Must be somewhere were we can stay in one place for the 3 weeks.
Must be in a low-populated area.
Must be in a relaxed, low-key environment.
Must be generally affordable (no African safaris)
Access to horses are preferable.

I'd love to hear your ideas!

Most of all we just want to be a family again. Together and enjoying life. We haven't had that in what feels like a really long time. 

I'm really glad that we can plan and dream. I'm so thankful we have a future together and I look forward for what is to come: Peace. Healing. Life.

After today, we have TWO more Mondays of chemo.

Sob. Happy, relieved sobs.

And then, chemo is finished.

I am so, so very glad.

I am blessed to have been able to go through this by my husband's side. I have cried. I have grown. I have come to know God in a way I didn't know possible before this.

What a blessing that God would let us know Him in such a way.

So very glad.
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March 23, 2016

the quiet

I've been accused of being very quiet online lately.

We're on our 3rd cycle of chemo.

It's hard and it stinks and we can't wait for it to be over.

When I'm at the lake house, I feel like a single mother with an extra, ill human to look after. Todd is generally tired and weak from the chemo. I am generally tired and weak from the chemo.

When we're in Seattle I have little ability to do much but fret over him. Although I'm sure I don't do enough, I feel like I need to be feeding/watering/blanketing/etc. him. I have the contents of the "Nourishment Center" cupboards memorized and often recite them to him, lest he forget something he might want. As it turns out, there's not much he wants in the Nourishment Center.

I have been silent online.

This is hard for me to talk about.

I don't talk about it offline all that much either.

I have a strange and strong desire to move my family deep into the mountains in a cabin by a lake for the next four years.

People spoke out against our decision to move forward with chemo. They felt it was wrong and would do more harm than good and felt it their duty to warn us as such.

How dare you?

I so often brushed it aside noting that I was sure they had good intentions.

However good it was intended, it wasn't right. And it's made me feel like I can't talk about this horrible thing called chemo, lest I be told it's our own fault and we did it to ourselves.

I've never in my life felt so judged and alienated.

Now, this was not the majority. Of the hundreds - yes, hundreds! - of messages, emails, texts, calls, cards, etc. we've received since this all started, it was relatively few that were of this nature.

Unless you* read the medical reports, you* are not qualified nor invited to share your* opinions and I kindly ask you* to keep your* advice to yourself* in the future when you* hear that someone has cancer.
*you being general you, people who feel it's their place to give advice without being asked

I guess I needed to rant a bit. This is actually not at all what I planned on writing when I set out to write an update. So. Moving on.

Before chemo began, Todd's tumor markers were measured in his blood. This is basically the amount of cancer cells floating around like they're on vacation. I imagine them as if tubing around a lazy river pool.

Jerks.

Anyhow, before chemo Todd's markers were at 64. At the beginning of cycle two they were down to 28. Doc was hopefully they'd be so low that they wouldn't even show up this time, but we just got the results from Monday's blood work and they're at 12. Not gone, but going. Thrilled at the progress.

After the last 3 weeks of chemo which started Monday, Doc expects them to be gone.

Booya.

Chemo is 3 weeks from being a thing of the past. Surgery is scheduled. Let me tell you about that. The tumor, which has shrunk some, we know from the pain level (currently at ZERO), is still very much taking up space in Todd's abdomen. We can feel it. We knew going into this that some of the tumor wouldn't respond to chemo, though there was no way of knowing how much. He'll go in for new scans in a month and then we'll be able to see how much shrunk. The remaining tumor will have to be cut out.

Now, if you've been following along on this journey you may remember that the tumor is around several main arteries and veins. Well, it might still be. We met with the surgeon last week and he said that the surgery can take up to FIFTEEN hours.

Bless that man's hands.

If the thing is till wrapped around the arteries and veins, it will have to be cut out layer by layer, ever so delicately. I'm thankful there are people in this world who thought to be trained to do such things. I can't even.

The surgery is the last week in May.

After that, recovery.

So, that's the latest. Maybe someday I'll be able to write about the long days and dark nights we are living at present. As it is, I'll spare the details and ask for your ongoing prayers for our family.

Thank you for the prayers and support that have been shown to our family. I have been trying to write thank-you cards but there is no way to truly thank everyone I want to thank. Maybe someday we'll find a way. But for now - thank you from the bottom to the tops of our hearts!!!
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February 25, 2016

the lines

I looked in the mirror at myself.

What happened?

My fingers gently felt along my forehead.

Yes, the wrinkles in the mirror are really there.

Worry has carved lines along my once youthful skin.

It wasn't that long ago Todd and I were at a Weekend to Remember marriage retreat and a darling older couple was commenting that I didn't look old enough to have kids, let alone to have been married for 12 years.

Bless them.

But today... today I do look old enough for kids and marriage and life.

My face is showing something that I didn't want to share.

Laugh lines are beautiful. I want to be covered in them. Doesn't that represent my life so much better than worry lines? I want people to look and me and think, now there's a girl who must have a lot to smile about.

Because I do. I have so much to smile about...

The ducks are gathered just past the dock off the back yard. Every few days the ducks, all the ducks in the whole lake it seems, all gather for hours in this spot. Like they're just stopping by for a visit. I can watch them for hours - though the kids make sure that doesn't happen. I love to watch them dive under the water. Fish? Seaweed? What are they doing down there?

All I can see is what's on the surface.

They bobble along, sometimes skimming something off the water with their beaks, sometimes quacking at an offending neighbor, sometimes just going with the flow.

I can relate to my ducks in so many ways. They seem to be doing their own thing, even when the whole flock is there together. They're out there surviving and fending for their lives. They're small and vulnerable and have to choose fight or flight.

And then they disappear below the surface. Alone. Their survival depends on their ability to hold their breath as they plunge below in search of that which sustains them.

Oh ducks. I am holding my breath also. Searching for that which will sustain.

In the cold darkness of the depths, holding my breath, I look out and see a light. My lungs hurt from being under for so long, but I can't turn away from the Light. The nearer to it I get, the less I hurt. Until finally my lungs are filled and I am warm.

Still under the surface surrounded by darkness, I am sustained. Even in this dark place, I find Light.

The ducks swim on, and I turn back to the mirror. The lines are still there. But the worry is not. I can close my eyes and see my worry resting on the bottom of the lake. I can smile.

We are days away from leaving our children and returning once again to the city. Cycle #2 of chemo begins Monday morning. Back to the 7-hours of infusions every day, ER visits, and endless sitting, wondering, and waiting. It feels a lot like sinking into the lake, farther and farther from oxygen and light and life.

I find peace only in knowing that even in the depths, there is Light still.

Oh praise God, there is Light still. 


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February 13, 2016

unreliable memory

Putting Samuel's space footie-jammies on him after his bath, I notice that his little toenails need to be trimmed.

I look at his fingernails and frown.

When was the last time I trimmed the kids' nails?

I stop and try to remember. I can't.

At least they had a bath tonight...

All around our room, the one room our family has been staying in for the past 10 days, I see things that have been forgotten. A half-emptied suitcase, a partially unpacked box, and the avocado that went uneaten before it began to go bad. A sign that meals remain to be a struggle for the adults in the family.

We had planned on staying in this room for the entire 9-weeks of chemotherapy. When we got here we paid a whopping sum from the money our dear church family sent us off with (don't even get me started on how well Chattanooga First SDA loves. They do it so, so well.). We paid enough we though, to tide us over until we can get some financial aid. Yesterday we found out that we don't get the aid we were hoping for.

Instead of paying for half of the housing costs, the aid we were granted only covers 8 nights for the rest of his treatment. Too little to make it work for us.

Oh sure, there are plenty of other options. We explored every one of them. There are extensive pro-con lists.

But the one option not on our list was a house sitting on Lake Chelan, just waiting for us.

We have several friends and family members within 3-6 hours from Seattle. Almost all of which have offered us a spare room, a basement, something. But jumping from one room to another offered our family no stability.

But the house by the lake - we can stay there, rent free, until May. In May the snow birds (can I call them snow angels?) will return and we'll cross that bridge if we need to. My best friend called the owners and explained our situation. They welcomed us with open arms... er... doors.

There is a yard for the children, and the lake (with a locked gate in between), and room for us to breathe and not be all up in each other's business. Cause let me tell you - we're all up in each other's business in one room in Seattle.

In the end, after all of the options were considered, weighed, and placed on one side of the pro-con list, the thing - the deal breaker - was help.

We need help.

I'm exhausted all the time.

I snap at my kids.

I struggle to be helpful to my husband.

I can't find the energy to cook.

We need rubber gloves and I can't seem to make it to Rite Aid to get some. I can't even remember we need rubber gloves until I need them.

Sigh.

I have to share another huge blessing. Being so far away means more driving plus paying for lodging when were in the city for appointments. The same BFF who found a house for us also started a crowdfunding page for us. I'm blown away by the response! People I don't even know are giving to us, leaving messages for us, and praying for us.

I feel weird even talking about it. I shared it on my Facebook page and it took about an hour for me to work up the courage to actually post it.

Anyway, there is enough money there to pay for gas and lodging! I'm so very grateful for each and every person who has helped with this. <3 <3 <3

Since I'm talking about it - here is the link. We are already so very blessed!

Well, onward we move now. My lists are growing. Things I need to get ready for our jaunt over to the lake. Things I need to pack. Things I need to buy/return. Things I don't want to forget to grab. My memory is unreliable these days. Thankful for lists.

Thankful for prayers.

Thankful for the help of friends.

Thankful.








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