Peace and Quiet

As busy as last week was around here, I'm happy to say that this week is moving at a much slower pace. We have far fewer visits scheduled and that is allowing for more quiet time. Michael has been especially drowsy today, so this is good. I want him to get the rest he needs during the day because his sleep is disrupted at night, too.

However, last night was one of the best nights we've had in recent memory. Michael didn't call for me between just before 11 o'clock until shortly after 2 am, and I was able to fall asleep and stay asleep during that stretch of time. That was the longest I've slept during the night in some time, and it felt so good.

I finally took the time this afternoon to watch another message from my pastor regarding healing, and I'm going to make an effort to watch a message of his most days because it's faith affirming. I also need to take advantage of the time Michael's mom is here and get in a nap each afternoon before she leaves. These are some little things I can do to take better care of myself.

Out of Control

Something you can't really understand until you experience what we're experiencing is how very little control you have over your own life. Life as we once knew it has come to a screeching halt, and we are now on someone or something else's timeline. There's a huge loss of freedom for both of us.

I don't write this to solicit sympathy, but more so to help some understand why I try to establish the boundaries I do, and why it's essential that my boundaries be respected.

Because Michael is so weak, he can do very little for himself. That's why I've taken a leave of absence from work - he requires care 24/7. It's not just so I can be here with him and hang out with him. Around the clock I help him with the most basic of tasks. I don't want to elaborate on that out of respect for his dignity, but you can read between the lines. Throughout the night I am called on for reassurance or physical help approximately six times. This has reduced my sustained sleep to a maximum of about two hours at a time, and once I'm up it's not always easy to fall back to sleep. During the day, I have to manage his medication schedule, persuade him to eat, make him comfortable, etc. It's a full-time job. We do have our moms to help out, but most of the physically challenging stuff is up to me. I just had a massage on Wednesday and my lower back is already sore again.

Then there's the constant comings and goings of home health aides, Michael's nurse, family, and friends. I think we must have had more than twenty visits during the last week. I have tried to allow as many people to come and see Michael as possible, but we have reached critical mass in my opinion. What's really troubling me at this time is unexpected visitors. Please call our home number and talk to me to see if it's a good time for a visit, and please don't take offense if I say no. Please don't just show up or tag along with another group coming by. It's not that we don't love you or want to see you, it's that we're exhausted and your visit drains what precious little energy we have.

Being Michael's full-time caregiver is a privilege and a joy for me. I'm thankful that I'm in the position I am to stay home with him and give him my tender loving care. But, it's not easy - not at all. I'd just like to be better understood and shown a little more consideration.

Key points:

• Call me first at least a couple days ahead of time.
• Be flexible - your visit might be postponed if we've had a bad night or we're having a bad day.
• Come in groups of no more than two at a time.
• Limit your time with Michael to ten minutes.
• Don't be offended if I don't sit down and visit with you. I'm probably just too tired to do so.

One more thing to be aware of is that Michael does not talk on the phone anymore, and he rarely gets on the computer. It's best if you contact us on our home phone number instead of his cell phone, and please don't email anything you don't want me to read. I've seen some interesting things lately. :P

Okay, I'm going to leave it at that.

Michael's Owee Finger

The last few days have been difficult for Michael. The hospice doctor had visited last Sunday and promised to return at the end of the week to treat Michael's infected finger. As the week wore on, Michael was experiencing more pain from the infection, and we had to start using the Oxycodone once again really early this morning to manage his pain. Even at the lowest dosage, that really dopes him up and so he slept all day long, only waking to eat a little food now and then.

I think the pain from his finger permeated his dreams, because he would frequently call me into his bedroom in the middle of the night during the week to discuss when the doctor was coming. He even asked me in one of those middle-of-the-night conversations to make sure that the good doctor didn't amputate it. Oh, my...

The doctor finally arrived early this evening and quickly treated Michael's finger. His approach was much different than the way the urological surgeon had treated it back in December. At that time, the surgeon had lanced the side of the finger and did not do anything with the fingernail. The hospice doctor said the infection was basically an infected hangnail (which is what Michael has said it feels like for months now), and so he cut off part of the nail and some of the dead skin around it. All we have to do is change the dressing and apply Neosporin once a day for the next three days. After that, the doctor wants it to be exposed to the air. Michael will also take a course of antibiotics. I think he will be needing the Oxycodone through the night tonight, but I hope he'll start taking less of it during the day tomorrow and transition to Tylenol instead.

I told him this evening while I was feeding him dinner that I had been missing him while he slept all day. He opened his groggy eyes and gave me direct eye contact as he said, "I'll be back soon." Too cute.

Thankfully that has been his only pain so far. So, now that that's behind him, I hope that he'll have better days in the week to come.

Team Michael

I have received quite a few "atta girls" for the role I'm playing in Michael's journey, but I am not alone in my efforts. So I want to thank some people who are carrying us through this.

Marian - Michael's mom. She's such a sweetheart and I am blessed to have such a kind and generous mother-in-law. Marian spends several hours a day here with us cooking, cleaning, rubbing Michael's feet, and just being a great source of love and strength.

Linelle - my mom. She's also here several hours most days. Mom prepares breakfast, does laundry, prunes my roses, and is my soft shoulder to lean on. Mom has had a lot of good ideas about things that will improve Michael's comfort and care, and she's always showing up with something we need for him.

Julie - my sister. While I was still working, Julie was here most of the day on Fridays caring for Michael so that my mom and Marian could have a day off. She is so tender with Michael. Julie has cooked for us, done laundry, and started pruning my roses last week.

Charlie - Michael's big brother. He's is a professional landscaper and he's been caring for our yards since last summer when it became too much for Michael to do anymore. Charlie has been a huge help to us.

Arlette - a good friend of Michael's. Arlette comes once a week with an incredible dinner for us (she and her husband are restauranteurs), and she gives Michael a massage. Today she gave me a massage, too. I really needed that.

Pastor Ray - our pastor friend. Ray takes the time to listen to us, he encourages us with God's Word, prays with us, and he is unwavering in his belief that Michael will experience healing. I am so grateful that he's made himself available to us in this time.

And there are so many other dear people who have made us dinner - coworkers of mine, friends, and family. A good friend of ours, Peggy, put us in touch with the meals coordinator at her church whose responsibility it is to coordinate meals for families in crisis. Thanks to Peggy and Mary, we were able to coordinate friends over the next five weeks to deliver meals to us three times a week. This is such a blessing.

And there are countless other friends, neighbors, acquaintances, blogger friends, and family members who have been praying for us, or who have reached out with words of encouragement, sent us flowers, fresh fruit, cards, etc. We have just been showered with love and concern. It's humbling, really.

So, thank you all for all you do for us. Go, team Michael! :)

Standing in Faith

As I mentioned here yesterday, we were visited by two associate pastors from our church in the afternoon. Pastor Ray has been a frequent presence in our lives in the last two months, and it was he who led Michael to the Lord. I don't know if I mentioned before on the blog how we came to meet him or not, but I know God's hand was in it. I had not met Pastor Ray at church, but he is the son of some friends of Michael's mother. She met him at his wife's baby shower back in October. It was that meeting that opened the door for me to contact him when I felt we were in need of some spiritual guidance. It was one of those small world things.

Yesterday, Pastor Ray brought another pastor with him - Pastor Tom. Pastor Tom told us a bit about his background before prayer with us. As a young man he attended seminary and came very close to becoming an ordained priest in the Catholic church. However, his desire to marry one day prevented him from making the final commitment required for that. He did continue in ministry, primarily by praying for the sick. He then told us numerous stories of those he has prayed for in the name of Jesus and their subsequent healing.

When the time came to pray for Michael, Pastor Tom anointed him with frankincense and myrrh. He prayed a simple prayer and asked for Michael's healing in the name of Jesus. He then told us to wait and be strong in faith. His confidence in Michael's healing was inspiring. Pastor Tom also prayed for me and Michael's mom because he knows how hard it is to see one's son or husband suffering. He prayed for our continued strength and peace of mind.

So, we are standing in faith for Michael's complete healing and eagerly anticipating the day when we are shown the evidence of it. Michael slept well last night and he says he feels good this morning. He is out of bed and enjoying a bowl of yogurt and granola while he sits on the couch in our living room. It's going to be a good day!

Good News

Since yesterday morning, Michael has improved. Praise God for that! He has gotten out of bed, spent time on the couch, talked more, and slept better at night. We are encouraged!

On Sunday the hospice doctor came for a visit. He was a breath of fresh air as he was focused on Michael's life, not his death. He encouraged Michael to eat so that he would gain strength. He also offered to do a little procedure on Michael's finger. This is the finger that has been infected since November. Michael was apprehensive about that offer, but has since decided to allow the doctor to treat his finger. Later this week, Dr. F will return for that. He also recommended that Michael resume taking the steroid he had been on since early January. We had discontinued this the last time we saw Dr. K on his recommendation that Michael discontinue all medications. Well, Dr. F said it was beneficial for lung function and for appetite. He increased the dosage a bit so that Michael would get more benefit from it. One of the things Dr. F mentioned to me that gave me a renewed sense of hope is that all cancers have a 3-7% chance of spontaneous remission. He says he has witnessed it himself. I did not solicit that information from him in any way, and Michael was doing so poorly at the time that I didn't think he could make it much longer. So, that bit of information gave my hope a big boost.

Yesterday Michael had a bath in bed. Our home health aide got him all cleaned up and she shaved his scruffy stubble, too. Now I can have scratch-free kisses from him. I know a lot of men have fantasies about getting a sponge bath from a cute nurse, but Michael would tell you that it's not all it's cracked up to be. He would prefer to get in the shower and do it himself. Hopefully he will continue to feel stronger and we can go back to doing things that way.

Please join us in prayer around three o'clock this afternoon if possible. We are having two pastors come to pray over Michael at that time. In your prayers, please stand in agreement with us for Michael's complete healing.

Is any sick among you? Let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith shall save the sick, and the Lord will raise him up, and if he has committed sins, they shall be forgiven him.

James 5:14

Tears

I cry every night - every night since we have not been able to sleep in the same bed together. I feel robbed of the most tangible comfort I ever knew. I miss cuddling with my husband before sleep, making love, and even hearing him snore periodically through the night. Now I find myself in a big half-empty bed. He still greets me with a smile in the morning, but I have to walk into the other bedroom for that. No more morning cuddles in bed.

As his body gets weaker, he has less energy for conversation. I miss talking about our future plans - whether they be about our next weekend getaway, this summer's vacation, home improvement ideas, or the babies we've tried so hard to have. We planned to do so much together. That was one of the things Michael has said he loves the most about being married - shared goals. We had a lot of those. Now I can't even imagine what my future holds, but I know it will be much different than I expected it would be just a year ago.

So much is slipping away from us. Each day a little more of him is suppressed by the effects of the cancer. He is still sweet and kind, attentive to me, but more quiet and withdrawn than in weeks past. It's heartbreaking. This isn't supposed to happen at this stage of our lives.

My house is cluttered with medical equipment and supplies from hospice, and various items we've purchased or been loaned in vain attempts to make Michael more comfortable. Nothing here is normal anymore.

Lest you think my faith is shaken, it is not. But even Jesus wept.

Weeping may last through the night,

but joy comes with the morning.

Psalm 30:5