Thursday, January 31, 2013

Words

When I woke up I had the most horrid headache. I went in and lay on the end of Steve's bed. He was sitting up, typing on Little Miss iPad. He said, "Look at me, it's a miracle!" I looked at him thru a headache haze and saw a gaunt man who hadn't shaved in a while. He said, "I'm cured." It then sunk in, he was no longer 'fluish'. I burst into tears and couldn't stop. I blamed it on the headache. A miracle, cured, a miracle, cured. Please Jesus...

I took some migraine meds, called a friend to pray and fell asleep to start over again later.

Wednesday, January 30, 2013

I breathed, I caught

It's unfortunate but true, I'm now sick too. I'll keep this short lest my typing take all my energy and I'm forced to crawl to bed.

Steve is on day 3 of nothing to eat that has stuck with him any length of time. He escaped my badgering since I slept all day, but not Nurse Michael who called and questioned how much he was drinking and if he continued to take the steroid for the brain swelling. He wasn't able to make it to radiation either. Just getting out of bed is an effort.

My rice pack has dinged in the microwave, I'm off to dreamland.

Tuesday, January 29, 2013

Lost sleep in ER

I'm really tired. Hard to believe there used to be a time staying up until 2 a.m. would not have bothered me, but not anymore. Age is such a funny thing.

Steven ended up in ER last night because of severe diarrhea. We are guessing a flu bug. He was given 3 bags of fluids and some meds to settle his stomach cramping. We got home about 4 a.m. I'm not used to just a few hours of sleep. Thank God for a mom willing to go to the drug store and get new prescriptions. I'm thinking it's all cold outside like it is inside. What a surprise.

So we will ease back into bland foods today and see how he does. I'm trying not to breathe the air but it's not working.

Update, the bland food did not help and he is camped out in the bathroom again. This flu is hard on a moderately healthy person, but Steve is not healthy. He is wiped out and discouraged.

Monday, January 28, 2013

Laughter is the best medicine

Our laughter is back. Despite the coughing pain he cracked jokes about replacing me with his iPad. Okay, there is a bit of jealousy at play here. She (I've named her but cannot repeat the name), has his full attention and gets to sleep in the same bed. Who wouldn't be a bit upset about that? I told him I'd like to see Little Miss iPad get his meds or fix his lunch but he just caresses her leather case and watches me steam.

I was praying for more ice to close the church today so I could have an extra day at home. I think it's time to take a few vacation days after month end is done. I'll show him who's who.

Saturday, January 26, 2013

Today's trials

The coughing for Steven is causing problems. He woke with a sharp pain in his upper back yesterday that was painful with the cough. This morning it hurt to even breathe. Most of his day was spent in bed, although this didn't help. Nor did it help bracing it against the headboard or lying down. He has a broken blood vessel in his eye from coughing. It doesn't hurt but looks bad. He has a medication for coughing. We need to call and see if he can increase the dose even if it does bother his stomach.

Friday, January 25, 2013

Strangers becoming friends

A stranger came to my door with a goody bag of wine, chocolates and gourmet coffee. She said she was an old friend of Steves and had been keeping up on his health through the blog and felt lead to bring us this gift and introduced herself to me.

I was shopping in Kalona Iowa at Sister's Garden looking for a handmade journal I'd seen there the year before. It was pages of mixed media that I wanted to try to make. I asked the sales person who took my email address and passed to the artsy lady who makes the books. We started corresponding and she then read the blog about my husband's terminal cancer. We found out we went to the same Heritage Wesleyan Church but at different locations. At Christmas as she made gifts she was lead to make me one of her books which she delivered to me recently. We finally got to meet. She is a stranger no more.

Another stranger, met through email, is going through a similar situation with her husband who is coming to the end of his journey with MS. An instant bond is formed between us, knowing few can comprehend the agony of watching a husband slowly succumb to illness.

When I wrote in my journal I was thanking God for all these angels new and old that have been coming to help me in one way or another. I told Him I was so grateful and didn't know how to thank Him. He then said to 'let them in'. I knew what He meant. I've been crying a lot and not able to stop. Of course, I don't want Steve to see this because he would feel guilty. So I made a list of people I know that I can call when I feel I'm losing it and ask for prayer. It's not easy to ask for help, but people want to and well...I need it.

Thursday, January 24, 2013

Steve is mad

Steven is mad today. He has been awake since 3:30 lying in bed trying to sleep. He's tired and has a headache. The choice remains, take the steroid and not sleep but a manageable headache or not sleep because the headache is unbearable.

Wednesday, January 23, 2013

Don't make me mad

Since being on the steroid a couple days Steven's headaches ease but then come back. He is exhausted, lies down and then can't sleep. How frustrating. This is a preventative brain radiation for lung cancer and I feel like he shouldn't be in this much pain.

I too, seem to be a little shorter tempered. Yesterday, I'm driving even with another driver and see a big white truck come up quickly behind him. When it doesn't get him to move faster, it switches lanes and is now behind me. It's huge and all I see it a big grill in my rear view mirror.

Now this makes me mad. I'm probably old enough to be the man's mother. I'm assuming it's a man because I don't see women do this intimidating maneuver. I look over my shoulder like, 'really?' I know the smart thing to do would be to get out of their way so they can speed past me. But I do what I do when I get mad. I flipped the mirror switch up so as not to see them and slowed down to the speed limit.

Tuesday, January 22, 2013

Brain swelling

We found out the headaches are from brain swelling. I read about this online and learned that the radiation causes an accumulation of dead cells to gather and this will press on the brain. Our brain doesn't have a lymph node system like our body does so it takes time for the dead cells to disperse.

So he was given a steroid for the headaches. He was on a steroid before and hated them but this is a low dose that he won't be on long.

He also will take something for the stomach upset.

Yesterday was bad for Steven. He sat (the short time he was up) with his head in his hands and rocked to ease the stomach cramps. I'm praying these new meds start working soon.

Monday, January 21, 2013

Calling radiologist

This morning I call the doctor before Steve goes to radiation to see if these symptoms are indeed from the treatments. If so, I don't see how he can continue. He finally had moments of reprieve from the horrid headache and stomach cramping yesterday.

I'm so glad he asked me to make this call. He is kind of laid back and may not be getting the severity across. This topped chemo's worse day.

Saturday, January 19, 2013

One of the things that scare me

One of the things that scare me the most is how I fall apart when he's hurting. It just breaks my heart. And I don't know how I will be able to see him really hurting and hold it together enough to say the right things, do the right things.

I'm failing at this. I'm...not sure what he needs. Nothing I say is right, it all irritates him. I know it's not me, he feels crappy. I want to scream, "Give this guy a break!" I want to scream and scream and scream. I want to scream. First I want to sleep.

Friday, January 18, 2013

Brain radiation day 3

Radiation day 3 of 15. They said the fatigue and hair loss would begin around day 8, but I think April Fool's Day came early. Steve is very tired and has a lingering headache. Maybe he is catching something, but this started after the 1st day of brain radiation. He would hold his stomach, his back and his head at the same time if he had enough hands. He spent most of yesterday in bed, finally getting up when I got home from work. I feel so bad for him. If this is from the radiation, what will he be like by the last week?

On a good note, he now weighs 149 which is the most he has weighed in years. I said it was from my good cooking and he laughed really loud. I'm not sure what the technician thought.

Wednesday, January 16, 2013

Staring into space

Every once in a while one of us will have this far away look in their eye, totally in another place. Normally, you would ask your spouse, "Hey, where are you?" But not us. We know where the other is, and we just wait for them to come back.

I know our every waking moment is shadowed with this cancer. Yet, nothing is said about it. I'm a typical woman when it comes to talking about things every which way to Sunday but not about the cancer. It's out of respect for him that I let him make all the rules. I am in a turmoil of uncertainty but would rather have that then make him answer questions he doesn't want to think about. I hope I don't regret this later. It could be really bad.

Monday, January 14, 2013

It's a small world

Steven doesn't want to go anywhere anymore. I know the flu and cold season has him worried that he will catch something and end up in the hospital. Because of the chemo, his immune system is weak. I need to be careful to not bring anything home. I can't believe how many people I know that have been sick with a flu bug or a bad lingering cold. I keep washing and washing my hands and trying to keep them away from my face.

I think if I do get something I should have a bag packed and leave but I'm not sure where I'd go. Who would want a sick fluish person staying on their couch?

Our world has gotten much smaller.

Saturday, January 12, 2013

Mask making in progress

Steve's mask making has been done but not without much fanfare. It was a very hard thing to go through since he is claustrophobic. The mesh mask is laid on his face very warm, pulled taut and fastened to the table to dry. He is then put thru the scans to pinpoint the exact spot the radiation will be applied.

They will call for one more appointment and then the 15 days of radiation, Monday thru Friday will begin. Sounds like a sunburn and fatigue will be the most noticeable side effects.

Friday, January 11, 2013

I choose to bleed

I choose to bleed. If I didn't it would mean I didn't hurt. If I didn't hurt it would mean I didn't love.

There is always another road that is less painful, but lonely. If I'm going to be afraid I'd rather it is with someone by my side.

I don't want to choose if this 'era' is bad or good. I just know on some deeper level that I am held. WE are being embraced.

I will breathe, in and out, I will laugh at the world and myself, and I will love with all my heart.

Wednesday, January 9, 2013

Mask from hell

Today Steve will see the radiologist to have a mask of his head made. This mask will be used to pinpoint the exact target area and to keep his head in the same position each time he has radiation.

We don't have any dates thus far for when this begins but I'm assuming it will soon.

Monday he spent the day putting away the Christmas decorations and cleaning the garage. It is very clean now.

Yesterday was a bad headache day for Steve. If he feels that way today the appointment will be cancelled.

Monday, January 7, 2013

What would you do if it were you

What would I do? If in June I was given 'maybe a year'. That's what he said. You don't forget words like that.

Being the writer I've found myself to be, I would have a letter for each person I love in my Bible. Of course I'm not sure how long they would be there before someone stumbled across them.

I would buy gifts for my grandson for each year so he would have something to open from me. I would buy an anniversary gift for my spouse for the years I was gone and give them to a trusted friend.

I would read everything I knew about heaven so I could get excited. I'm really sure there are cookies there.

I'd plan all the final stuff right down to what songs and who should sing them.

I would ask myself serious questions like; does everyone I love have something made by me? Is there anyone that needs to know more about Jesus and being saved? Who do I need to apologize to?

I'd ask myself what is it that I really like to do. And then I'd do it. For me, I'd have some kind of creative project in each room, sewing and yarn in this room, plant propagation and green house here, library with fire place, and a different kind of sweet treat each day.

I'd make a list of all those I need to visit and then take one long road trip. I'd preached about Jesus, gave out plant starts and homemade gifts.

Friday, January 4, 2013

Life for Steve

Steve is doing about the same. Bad cough, some stomach issues from meds to lessen the cough. He needs to eat every 2 hours or so but doesn't and then gets hungry so fast he feels sick.

He said he is going to call to schedule the radiation. He wanted to put off thinking about it thru our Christmas and family time.

His latest project is getting his mom set up with a new Ipad the brothers all pitched in and gave her for her birthday. He's a good teacher so this should be fun for both of them.

Thursday, January 3, 2013

God and friends

Sometimes I feel under a great weight. At times like these I'm so grateful to my friends and family. They tolerate my up and downs and show such support. Each one is a gift. I see such love shining through them as they hug me and ask how I really am. They listen to me prattle and watch as I feel guilty for what I say and yet they encourage me still. While they know what Steven is enduring must be beyond comprehension, they know I too am in a dark tunnel and their reassurance there will be light again gives me such hope.

Thank you to the women who have told their stories. Thank you for sharing your scars. I want to remember the hard things I've been through before. Maybe I didn't handle all of them wisely but if I carried away knowledge it was not in vain. Don't let me waste my pain and heartache.

But at night I am alone with my pain. In the dark silence I give God my frailties and visualize a canopy of compassion. I know I'm falling but I'm not failing. I'm falling straight into the protectiveness of my Savior's arms.

Tuesday, January 1, 2013

What could I say

While on vacation recently, we stopped to get gas at an establishment that has a huge porch across the front and on it are lots of rocking chairs. Sitting in one was an employee smoking a cigarette talking on her cell phone. She had this raspy voice long time smokers get.

I told myself as I passed her that if she was off the phone when I came back out I was going to sit in the rocker next to her and tell her those damn things she was smoking was part of the reason my husband...and I couldn't go on with the sentence, not even in my head.