Friday, May 31, 2013

The H Word

Steve came back today. Not all the way but I see him in there now. He's talking but not much, and even joked a bit. He told me I wasn't to leave him alone yet seemed okay when it was time for me to go home for the night.

His strength or lack of remain a mystery. Or maybe if you take a weak man with a bad disease and take away his oxygen, medicate and put him on a ventilator for 7 days it would be normal to recover slowly.

We are talking about Hospice care. This is scary, but after last week I feel we are one step closer to accepting the end of life. And maybe that was what his contemplation was about. Perhaps he will tell me sometime.

I seem to hold it together pretty good and then I see him struggle to take a pill from the nurse's hand and put it in his mouth and I cry for hours. I want to say, "Do you know how strong this man used to be?" But his strength is not who he was, nor is his weakness now. He is the man that would be there for you when you needed him, and the one who loves me most in the world.

Friday May 31st Morning

Steven continues to improve in a regular hospital room. I miss the nurses but not the continuous noise of ICU.

He has been quiet since the ventilator was removed. He doesn't watch TV but instead stares off. His movements are slow and shaky, and his voice is back to a bare whisper. I can tell the rheumatoid arthritis in his hands and feet are bothering him. He allows me to stretch and bend his feet often. They have come from physical and occupational therapy. They have checked his swallow reflex and graduated him from liquids to soft foods.

He is very weak. Weak as in not able to stand or scoot up in bed without two people helping. I'm hoping this improves daily. Yesterday he sat in a chair for a couple hours. We were visited by an RN who talked about what we will need when we go home. She suggested visiting nurses and things like a walker and cane.

The doctor who came yesterday said we would talk over the weekend about discharge plans. Home is a precious word. On one hand I cannot wait to get him home and on the other I'm worried about the care required. As I reflect on last week, I remain grateful for each small accomplishment.
Mushroom Hunt 2011

Wednesday, May 29, 2013

One Step Closer

We have been moved to a regular room. One step closer to going home. God is so good. Steven has been quiet since coming off the ventilator. He has a headache they can't seem to get rid of. We are just sitting quietly not bothering him.

I read something that resonated with me. If I find God in the middle of where I am, even when I go through distress, the distress will not go through me. I am walking a path of uncertainty, but the God of the universe is at my side with his arm around me. He is saying, "Walk with me and fear not."

Tuesday, May 28, 2013

Tuesday May 28, afternoon

Today is a good day. Steven was taken off the ventilator. He is breathing fine on his own. He's groggy and doesn't feel good but one baby step at a time. I'm glad to have him back from the brink of death.

Hi God, it's me again, needing

Hi God, it's me again. Sorry our talks have been kind of one sided lately. The majority of my prayers are me saying, "Please God", several times each hour. I keep thinking you will answer me by healing Steven. I still know you can. But then your answer comes in the form of another person being there for me.

I am so foggy. It's a good thing my body knows how to breathe in and out or I'd probably forget to do that. God, thank you for life's simple pleasures. Coming home to a mowed yard, getting Whitey's yesterday and having a pillow to hold to fall asleep last night.

I keep hearing the ring tone I have just for Steven's calls and texts, but it is always another person's phone. Gosh, it would be great to get a text or call from him. After being on a ventilator and having two more bronchoscopies, he will not have a voice at all to make a call.

I sit at Steve's bedside and tell you God how much I love this man, but you know that. I'm not done yet. I still need him to touch me and whisper sweet nothings or somethings in my ear. I need him to tell me how to make the basement stop flooding and when he changed the oil in my car because I don't see where he wrote it down. I need to know what company he wanted to replace the roof and how to finish all the trim he started staining. I need him home so I can crawl in bed with him. I need...

Monday, May 27, 2013

Monday, May 27, Evening

Today the pulmonary specialist has started weaning him off the ventilator. They will keep a close eye on his blood pressure, oxygen level and any sign of anxiety. They will back off and try in a few hours if that happens. We are all excited about this. As long as his breathing is good they will continue the weaning until eventually they can remove the breathing tube.

I know we still have a long way to go and things can get bad in a single breath (or lack of) but I'm more positive than negative.

Last night I went home and my computer is not working again after it was looked at. Then when I went downstairs I saw it was flooded. I can handle a terminally ill husband on a ventilator, but those two things put me over the edge. If there is something called life rage I had it. Fortunately, no one was there with me.

Sunday May 27, Early Morning

Steve remains on the ventilator in ICU at Genesis. With the holiday weekend, we are having to wait longer for the culture results. We had two negative results for PCP pneumonia, so I think it will be ruled out. Then there is the fungal pneumonia, which we do not want him to have because of the danger to the kidney.

Our mode of communication is a challenge for both of us. I feel like jumping up and down when I finally guess right what his hand gestures mean while he falls instantly asleep.

Saturday, May 25, 2013

Saturday May 25th early afternoon

Steven is still running a temp and is still breathing too rapidly. We are not touching him or trying to talk to him so he can just rest. They are waiting on test results to show what what kind of pneumonia he has and in the meantime they are treating him for bacterial, PCP and fungal pneumonia. Keep him in your prayers.

I'm Not Alone

I get up in the morning, and thank God that he has today all planned out. Every step I take, every person I meet are not random, but His plan.

So I'll take each step with confidence. And if I falter, He has put family and friends (and even some strangers) beside me to make sure I know I'm not alone.

Friday, May 24, 2013

Friday May 24 evening

Steven is running a temp today and his breathing is too labored so he is
medicated more. They wanted to do a CT scan but can't at this time. They
did another broncoscopy and will check for PCP pneumonia or something
fungal from mushroom hunting. They think its strange his symptoms began and
progressed so quickly to this point. I'm so thankful for all the prayers.
I can feel peace much of the day so that has to be a God thing.

Thursday, May 23, 2013

Thursday May 23, evening

I sit by Steve's side and listen to him breathe. Even though he is still on the ventilator, they have the medication at a level where he is aware of his surroundings as he fades in and out. He responds by nodding his head or with hand jestures. We are pretty good, so far, at interpreting ventilese. The first time he tried to tell us something, we needed to get the ipad out and he wrote, "I live." Of course that made me cry.

They said, in his recent X-rays, his lungs look better with less evidence of pneumonia. The pulmonary specialist hopes to begin weaning him off the ventilator. So we pray for healing.

Thursday May 23

This morning as I get ready to go to the hospital, I'm overwhelmed by emotions. I'm still going to mend that hole in his favorite jeans. And I will save the last bowl of Lucky Charms for when he comes home. The morels are clean and in the frig. No one fries up the morels but Steven. I didn't drink his 312 or watch a show from the DVR. I did sleep on his side of the bed, but he'll be okay with that.

Steven was ventilated and medicated to put him in a deep sleep yesterday. The medication will be decreased as they see his blood gases improve. This could be anywhere from a couple days to a week. We are praying he can come off the ventilator but with his chronic lung disease this may not happen. While he sleeps and his breathing is done for him, he will receive antibiotics to rid him of the pneumonia.

It's a nap. We kissed him and said we'll see you when you wake up. And there is no reason he shouldn't wake up. If only love could heal...

Wednesday, May 22, 2013

Please pray

Please pray. They want to ventilate. Pray this is not the end. We are not ready.

Tuesday, May 21, 2013

In ICU

We didn't have a follow up appointment for the pneumonia until Wednesday morning, but Steven's breathing had us both concerned. It was a pant, requiring no activity. I think we were waiting for the antibiotic to kick in and the breathing would improve, but it didn't.

I called his oncologist who had him come in. Insurance requires a saturation test to approve oxygen use at home, so we were directed to Genesis East for the test and then would come back to the oncologist and get some IV fluids. I thought he would balk at the use of a wheelchair but he didn't. His oxygen level was 61 which is very low and so he was admitted into the ICU unit at Genesis West. Within minutes of receiving the oxygen, it was as though he woke up. His face had color and his eyes were alert. I just started crying and said, "Welcome back."

Pneumonia

What started off as a sinus infection for Steve, has now turned into pneumonia. We went yesterday for chemo, but they sent him for a chest X-ray instead. So he is on antibiotics. I worry because he is panting. At first it was when he exerted himself. By exertion, I mean walking 12 steps to the bathroom. But now he is panting just sitting in bed. When I would check on him at night, he was breathing 3 breaths to my one. This can't be good on his heart.

I'll call the doctor today and let them know. He has a follow up appointment tomorrow morning. I worry.

Sunday, May 19, 2013

What Is Precious?

What is precious? Precious to me is the feel of his body when we hug. It's a gentle hug because he is fragile. It is the kisses on cheeks because his lips have raw spots. It is the feel of his hands, smooth now where they used to be rough. It is trying not to cry when we make love, as I wonder if it will be the last time.

Saturday, May 18, 2013

Being Carried

I was reading that when a sheep continually wanders off, a good shepherd will break it's leg to keep it by his side. Or he will carry it. I don't know if my Good Shepherd is breaking anything on me except maybe my heart, but I do know He is carrying me.

I know my foggy state is nothing amiss medically. But what if this is a gift? That I move and think slow is not my norm but can be calming to a guy on steroids. The fact that I'm not able to completely comprehend my future alone or the path that leads to it is somewhat good I think.

It's amazing to me how important today is, each day when I wake up. Today, I see Steven and I love him so much I cry. Are other wives doing this today? I am blessed with the desire to take care of his every need. I want to be one step ahead of his needs. Because, face it, I don't know how much longer I have to do this. Does anyone?

Friday, May 17, 2013

Mothers

Mother's Day I always feel like getting my kids a card. One year I did. They were in high school and I wrote them a thank you letter for being such an inspiration to me. I thanked them for not being ashamed to be seen with me like some kids are with their parents. Then I told them what specifically made them unique. I still have the cards and as I look at them I remember how I felt then and now. Proud at the way they not only survived some hard challenges, but learned, and then tried to teach their brother.

It's funny how they spent so many years fighting and arguing and now they are best buds. They prioritize time together. I like that. I guess because I never thought I'd see it.


And face it, we are not just mothers to our children, but to their friends, their girlfriends and then wives. I received thank yous from two young women who said I had touched their lives and impacted them in positive ways. I never thought I did anything special, but I know I loved them and still do. So love must speak loud because they heard it and made my Mother's Day very special with their words of thanks.

Wednesday, May 15, 2013

Brother Time

I'm having such computer problems and getting so angry about it. It either won't open a browser or opens 7 at the same time. I have to reboot it each time I want to use it and after typing my little heart out the page rolls down and my service is gone.

The brothers have arrived and the mushroom hunting commenced. Seems like things keep going wrong, but I think everyone is having fun. Tomorrow night, our usual family night will be held at the campsite. This weather has me giddy. I see the flowering trees and greening of all the yards and love it. I want to fill pots with plants, but want to keep everything requiring maintenance to a minimum.

Monday, May 13, 2013

Mother's Day Weekend

Our weekend went well. Friday we were at the campsite, enjoying the cool evening. Saturday the wind brought us home. I spent fun hours doing a craft and Steve got to trek through the woods mushroom hunting. I have to admit I was worried about him falling (which he did 4 times) and getting hurt, but he made it home. Sunday was time for the boys to visit. The house was noisy with all of us and the kids. I love that time, but the noise level can make Steve anxious.

Brother Mike and Bill should have both arrived to the campsite by now. After chemo Steve will head out there and the 'brother' fun will begin. Thank you God for time, energy and family.

Thursday, May 9, 2013

Tired Is Better Than Wired

I was hoping for an easy pill fix for my fatigue, but that is not to be. My labs came back above average. Therefore, this is life. I can do this. Being tired is better than being wired. As long as no one is in a hurry for anything, all is well. As long as it is okay to trip, spill and forget my words, I will ease into thinking this is normal.

Steven is suppose to be resting today in anticipation of our out-of-towners arrival. He has our old camper sealed from leaking so his goal was met. Unfortunately, he had hoped to be done with that on Monday. I certainly cannot tell him to stress less about time. He is pushing his body, which he always did, but now he pays with hands that don't work at all.

He asked me to talk to The Big Man about stopping the rain. I told him he had the same phone number I did. My prayer is that he finds mushrooms and has a great bonding time with family, and of course that it stops raining.

Wednesday, May 8, 2013

So Tired

I'm still so very tired. Hopefully, some blood work and a doctor visit will let me know. Then, when I find out it is just 'life' and nothing medical, I just live it, right?

Monday, May 6, 2013

Off To Chemo

We are off to chemo. We see the doctor today too. He will check his blood work and make sure his cell count is sufficient for the dose of Topotecan. It's hard for me when people ask how long he has to have chemo. And hard for them when I say he will do this until the end. The end. I'm still praying for that miracle and I know many others are too.

Sunday, May 5, 2013

Still

I found an old picture of us. I love this one. We are both young and happy and so much in love. But hey, now we are not so young, unless you are 70 or more, but still happy and still in love.

Saturday, May 4, 2013

He's Happy Today

Steve is happy today. His nurse (me) is home from work, he got to walk in the woods for a short time looking for mushrooms and he is in his garage staining trim for the painted room. I love it when he's happy.

Friday, May 3, 2013

The Snore

I would awake to the sound of Steve snoring. I'd start with my foot inching over to his to nudge. Then I'd move, gently pushing against him and it would stop. Hurry, hurry get to sleep before breath number....too late, it has begun again. "Honey, roll over."

Now, I hear that snore and smile. Thank you God.

Thursday, May 2, 2013

Life

Things are going okay in the Lane household. We are having our challenges like my headaches and his chemo side effects, but also precious moments.

Josh and Steve have finished painting one room and will now replace outlets and the ceiling light. Then it's on to the kitchen.

The chemo is affecting Steve's nose, mouth and stomach. But he is talking about things and that makes me happy and sad. Funny how I wanted him to share and now that he is my heart hurts.

I'm tired mostly. A sort of exhaustion that comes from a slow drawn out trauma. My words don't come when I talk. Just now...that last sentence doesn't sound right. I walk slow and think slow. Oh well.

Steve is the most talkative in the morning. So we coffee together in bed. Some days, he has been up since 4 a.m. so he has a lot of thinking going on. I listen. Then at night, our 7 p.m. 'gather at the table' is more of a recap, but we are both so tired at that point. It's all good.