the first 6 days of cancer

December 30:
Todd was texting and I was halfheartedly playing a game of Sudoko on my Kindle. I was glad I thought to grab it. I was also glad for the free Wi-Fi in the emergency room. There had been a slew of nurses and other people in and out of our room and we sat and waited for the CAT scan results. Blood work had already come back clear and so we were hoping that the scan would show a small enough kidney stone to pass without needing a procedure. Todd’s pain level had gone back up so they had given him some morphine to help the pain.

The door opens and I looked up from my Kindle. A no-nonsense woman entered and identified herself as Dr. Something or other. She strode into the room and stopped mid-stride.
“Who is with you?”
A pause. “This is my wife.”
I climb up in the bed and sit next to my husband.
Dr. Something nodded her approval and headed to the computer to pull up Todd’s chart.
“I have some bad news for you.” She said still typing on the computer.
Todd and I half smirked.
“Nice opening line,” I thought.
She looked at Todd, then me, then back to her computer.
“We found cancer in your abdomen…” More words followed and kept coming. Technical words, words I didn’t understand. They filled up the room and made it very hot and very cold at the same time.
My hand clasp Todd’s.
“I don’t know what you’re saying.” I interrupt her. What did she just say? I can’t remember.
“Sarcoma. It’s they type of cancer.” More words. I couldn’t make them out though. 
A feeling hits my chest. This didn’t seem like a joke. But it didn’t feel real.
Dr. Something is trying to explain something. Probably something important. Probably something I should know. But for some reason I just can’t make out what she is saying.
Finally the words stop. She leaves.

And we are left there in the hospital bed together. Crying. Staring. Thinking. Silent.

…

By the time Dr. Something came back, hours had passed. Todd had gone in for more scans, my good friends had our kids settled down for the night at their house, and another good friend had taken on the task of keeping us from falling into a pit of despair with all the unknowns. She sat in the ER room until 2 am with us, laughing, crying, and thinking with us.

Dr. Something looked at Mandy, “Who is this?”
Todd, defensively, “Our friend, she can be here.”
Dr. Something gave the nod of approval.
Again the chart was pulled up and again all the words. I could comprehend more of what she was saying this time, a mass has grown on Todd’s psoas muscle. It’s crushing his ureter - the tube that carries fluid from the kidney to the bladder. That’s why his kidney were hurting so much. It can’t drain.

So many words. They are so heavy. They are crushing me.

December 31:
Todd woke up this morning and cried. He had been hoping he had a bad dream and would wake up and it would be all over. But, it’s not a dream.

I picked up the kids from my friend Jenny’s house this morning. I faked this normal, cheery voice when talking to them. But I don’t feel normal or cheery. But they are children, so I need to act like everything is normal or cheery, right? How am I supposed to act? I don’t know.

Todd has slept most of the day due to the narcotics he’s taking for pain. I have spent the day bouncing from peeking in on Todd, checking the zillions of notifications that continually pop up on my phone, and trying to be normal for the kids. 

The kids now know that Papa has “cancer” although that doesn’t mean too much to them at this point. They know he has a tummy ache and is taking medicine. They know he’s going to have surgery to try to take out the “cancer” in him.

I finally sat down with the 500 page report (slight exaggeration but it might as well be 500 pages). I’m finding out all kinds of tidbits that the doctor may or may not have told us last night. For instance, there are 3 masses - 2 in his abdomen and 1 on the lining of the sac around his lungs. They suspect the middle size one, 2 cm, is metastatic and the smallest one, by his lungs, to be benign.

There are a lot of words in the report. They are very large and make my head hurt. I feel like a kindergartner trying to sound them out. I’ve called some dear medical friends more than once to ask what words mean. What does all of this mean? We have a lot of questions. Monday feels like a very long time away.

January 1, 2016
I sit down to eat and end up staring at my food. Already I’m hearing, “you need to eat,” “you need to make yourself eat.” I put food in my mouth because I should. But I can’t remember the last time I was hungry. Wait, yes, I was hungry in the hospital room when we still thought we were dealing with a kidney stone. Cancer has eaten away my hunger. But still I eat. For Todd, and for the kids.

I’ve begun writing the letter that our donors will receive next week. Of course until we know more and have a plan we don’t quite know what to say to people, but we’re preparing. For the best, for the worst, for just an hour at a time.

Slowly we’re letting friends know, although a well-meaning friend has shared this information with the world before we feel ready. I can tell when someone knows as soon as I say “hello.” It’s always the same:
Me: “Hello?”
Person: “Hi Cas, this is so-and-so…” Their voice is always soft, and they speak gentle words that they fumble over. It’s not that I don’t love and appreciate people for caring - because we do. We do. It’s just that we are still processing. We are still wrapping our heads around the “c” word.

Everyone is asking so many questions. “What can we do for you?” What can you do? What can I do? I end up pacing the house and checking on Todd and feeling restless but unable to concentrate on anything. I wish my sister and mama Joyce was here. I don’t want to be alone. But I don’t really want to talk to anyone either.

Todd has always been my rock. It never occurred to me that my rock might break. Everyone is telling me I need to be strong. Be strong for Todd. I’m trying so hard but I feel so weak. And cold. It’s so cold.

Despite the constant ups and downs, today was a great day - Todd’s pain subsided for most of the day. Sam spent the day with friends, and Amelia was there until after lunch, then she came home and I took her out to a friend’s to ride a horse. We both needed that.

It was the first time I’ve left Todd since I picked him up to take him to the ER Wednesday afternoon. It was hard and I was scared. We texted often and that helped ease my mind and let me focus on Amelia more. She is proud that she has moved from walking the horse to trotting. A few times I had to remind her she can’t canter yet. Love my horse girl.

January 2:
A new thought came to my mind early this morning. What if… what if this was all just a mistake? What if the radiologist was wrong? I closed my mind and tried to think what it would be like. A wave of hope flickered through me, gently warming my cold heart.

A second new thought came from nowhere while I was in the shower. All along we’ve been thinking about surgeries and chemo and radiation and treatment and support and getting though this. But what if he doesn’t? I could potentially be a single mother… I mean, anyone could lose their spouse any day of the week, so many things could happen - but we’re potentially standing on the brink of something happening.

I wondered briefly what it would be like to be a single mother, and then I let my mind turn to Jesus. I don’t know what’s going to happen, but I believe He does. I don’t know how this will work out for good, but it will. Even if I don’t see the good right away.

January 3:
2016 isn’t quite starting out the way I expected. This year was going to be the year we moved back to Guyana. We were building a house in Paruima village. We were hoping to adopt a child this year. Things aren’t what we thought they were - but we are at peace with it. Most of the time.

This morning I went to the supermarket to get a load of organic veggies for Todd. While waiting for the cashier to ring me up, I got a text from Todd.
“And he wants tomatoes.” I mumbled.
“What do you need, sweetheart? We’ll get it for you.” The cashier smiled.
I was quick to not cause trouble. “No, no, that’s ok. I’ll pay then go get it.”
“No, I’ll get it, what do you need?” The girl bagging the beets asked.
“Tomatoes. Organic. Whatever is cheapest.”
“How many?”
“6…?” I wasn’t sure. But she took off towards the tomatoes.
The cashier was making friendly conversation when another customer got in line.
“You can ring her up, I’ll wait.”
She grabbed something from the lady’s pile, but then put it in my bag.
“Oh, that’s not mine!”
She looked at the lady, “Oh my goodness. She’s buying all this healthy food and I was going to be so proud of her for buying some pudding!”
We all three laughed.
I looked at the cashier again, “I’m so sorry, I should have just paid and then went and got it.”
She was in the middle of assuring me that it’s no problem, as was the lady behind me, when I burst out crying. Hard. And loudly. If ever I needed a transport beam, it was then. I was so embarrassed.
When I calmed down I looked at the perplexed cashier. “I’m so sorry. I don’t know where that came from. I just found out my husband has cancer.” Why did I say that? Why am I telling strangers? It just came out.
They were very sympathetic and soon my tomatoes arrived and I could retreat to the truck.
Lord, help me.

Today was actually a good day, even though we had a rough patch. I got a funny email and went to tell Todd. I found him on the bathroom floor, curled up. My heart went to my toes. Then, I heard him. The sound no wife ever wants to hear. The sound of my husband sobbing in a dispair I can do nothing to ease. My dad’s words played in my head - “You need to be strong for him now.” I wanted to cry with him, but instead I just held him and rubbed his back. I prayed. I wondered when our hearts will heal. But I didn’t cry.

Todd’s pain wasn’t as bad to today and I’m so thankful. He was able to be out and about, which he was thankful for. He’s going stir-crazy in bed. It took a bit of stubbornness on his part to convince me, but I’m glad I didn’t fight him. He was right - he did need to get out of the house. He and Sam spent an hour exploring Toys R Us while Amelia and I shopped for some winter clothes for her. I guess now she’ll need more than 2 pairs of pants.

I’m anxious for tomorrow. I’m not sure what to expect. I’m not sure what I’m hoping to hear. But ready or not… Tomorrow is the day.

January 4:
I woke up with my heart in my throat. I planned on turning off the alarm and going back to sleep (this staying up till midnight and waking up at 6 business is getting old). Instead, my brain figured out in about .5 seconds that it’s Monday.

I was ushering everyone out the door and had to go to the bathroom one more time. Nerves making things… overactive. I probably shouldn’t talk about that in public. There is so much in my mind, it might spill out. I have several pages of the little notebook Mandy bought me to write down questions for the doc filled. What is it? How did? When can we? What if…?

We sat in the little room for probably 20 minutes. Or 40. Or 5. Or an eternity. I’m not really sure. The doctor came in, let me turn on the audio recorder I brought (bless her) and we started talking. It turns out she couldn’t tell us that much more than what we had already deciphered from reading the report from the ER. They need to do a body scan to make sure there’s not cancer elsewhere in the body.

We keep using that word. I hate it. Cancer. What a jerk.

I again asked - are they sure it’s cancer without having a biopsy? Modern technology and experienced radiologists are a thing to be marveled. They are sure. She said, in a very unconvincing tone, that there is a slight chance that it’s not cancer, but she - nor the radiologist - think so. The size and shape and texture and behavior and whatever of the mass apparently just screams, “I am cancer and I suck!” Jerk.

So. Ultrasound is scheduled. Scan is not. Biopsy is not. Hoping those two would get scheduled today, but she thinks they’ll happen this week.

We have some heavy options to weigh about where to get treatment. Our family is spread throughout the Pacific Northwest. If we go to Oregon and to OHSU, we won’t have our church family, Bible study group, and homeschool group. My Bible study alone is keeping us alive with meals each night. I’m sure Todd and I both would have lost more weight than we already have if not for those meals. I still don’t have hardly any appetite but it’s so much easier to eat when the food is put on the table for us. I don’t think I’ll ever be able to thank these families enough.

We can stay in Tennessee where we have a house and a fantastic support system, but then we are so far from family. And we need them too. Almost all our family would be within a 5-hour drive. But almost all of them would be an hour or more away.

Sigh.

So many things to sort out. The doctor said we need to decide pretty quick because treatment should all be at one place, ideally. Pro/con list. Flip a coin. Draw straws. Cast the lot. How can we decide?