Bitter & Sweet; A Family’s Journey With Cancer

Chapter Eleven: Back to Work, Whatever That Ends Up Being

Tuesday, September 7, 2010 3:17 PM

First day of second grade for Frankie! Dad had suggested Tim go in late to work and get Frankie on the bus (for the first time!) so he did! We were thrilled. Frankie insisted on wearing his suit… is he cute or what? End entry

This was one of those things that made me smile. Prior to this year, I couldn’t really get Tim to do things like go in late to work so he could see Frankie off on his first day of school. Those kinds of things were always “mom’s job.” Not this year. This year Tim takes every opportunity he can to make memories with us. It’s a lovely thing.

Tuesday, September 7, 2010 Guestbook entry from my Dad’s friend

Frankie is a cutie. Only grandpa wants him to have a haircut!

Tuesday, September 7, 2010 Guestbook entry from Tim’s friend

Your son is adorable and I wish him lots of fun in second grade while he is learning. Hope that Tim is well. Dads usually aren’t the ones taking pictures on the first day. That was awesome for all of you.

Tuesday, September 7, 2010 Guestbook entry from my high school friend

Look at that handsome little dude! Glad you could make some special memories together today. Our thoughts and prayers continue to be with all of you. End entry

Another new thing for us is walking. Tim always said, “I don’t walk.” Period. I’m definitely not a big exercise person, but I always thought if I had someone to walk with, that wouldn’t be so bad.

After ten years, Tim finally relented and said we could get a dog. But he reminded me again, that “I don’t walk, not even dogs.” But having Taffy forced me to get out and walk every day.

Somehow amidst all of our changes, Tim decided to have a go at walking. He then decided he even liked it! He can’t believe how nice the little parks are near us and is even more surprised at how friendly people are. I keep telling him it’s dog people — they tend to be friendly.

We would walk Taffy and chit-chat with people and know it was good for our souls. Eventually, we started taking the wheelchair for Tim as his physical energy would die out before his emotional energy did. He kept the leash in his hands and I pushed the chair. It took us a while to get the rhythm down but we eventually did.

Then I got pneumonia. And our brief routine got changed again. Now, we do our usual thing halfway around, but then we switch. I sit in the wheelchair and hold the leash and Tim pushes us around.

I think Tim is pretty proud of taking care of me while I take care of him.

And I have to admit, it feels good to sit in my exhausted state and have him tend to me. I’m sure we are an interesting sight to onlookers, but we don’t care. We love this new ritual!

Saturday, September 11, 2010 10:03 AM

Hey everyone… Small update — we saw the Hospice nurse yesterday. My blood pressure is up to 100 now which is a positive improvement. Tim’s vitals remain perfect.

Because his insides are not functioning properly, his stomach is bloating some. This is then pushing on the liver and other organs so he is experiencing some pressure in those areas. However, they will just keep an eye on it at this point because he has no other symptoms (like terrible pain, etc.). It is better not to mess with anything (like a drainage procedure) until it becomes necessary.

We’re moving along a day at a time. Hope all of you are doing well as you start the new school year and get back into routines, etc.. We love you!

Saturday, September 11, 2010 Guestbook entry from our church family

Hi Tim and Darcy, I am so glad that we finally met today. I felt a real connection to both of you and I also knew I was in the presence of a deep love. Hope the rest of your day was peaceful. End entry

Molly was someone that attended the same church as we did, but we had never met. She contacted me because she belonged to a charitable organization that was having a benefit in October. They like to have two people or organizations to divide their proceeds between and we were selected! We were surprised and thrilled, to say the least.

I am a list person, someone who needs a system to accomplish what I do. I know I’m a little OCD-like, but I figure it’s not such a bad vice to have if I’m going to have one. When Frankie is in school, there are always many things to handle each day. That is not unique to me or us, but every once in a while, the absurdity of my list hits me like a brick, smack in the middle of my forehead.

Hmmm… Make Frankie’s lunch. Pick up the house. Run errands.

Pick out a cemetery plot with my terminally ill husband.

Make phone calls. And we would just go down the list each day and do the best we could.

But then I would get stopped dead in my tracks and think, does anyone realize that this list is crazy? Crazy?

Talking about cemetery plots also made for some uncomfortable conversation. My parents bought double plots before my mom died so that was all settled for them. We hadn’t considered this and we had to make a similar decision.

I didn’t really want to get a plot for myself, not knowing where my life would be heading. I didn’t want to hurt Tim either though. I have not decided yet, but I think I would prefer to be cremated anyway. Turns out that in most plots you can have one additional cremation burial on top of a casket. That made us both feel better. We aren’t going to add my name to his headstone, but at least we know I can be with him if that seems the best down the road.

One day we went to look at cemeteries. Neither of our parents had plots that were close by. That was important to Tim because he felt bad he didn’t get to see his parents’ cemetery very often because it was a long hike. He wanted his kids to be able to visit often.

We finally decided on a lovely place within walking distance of the church. Tim said he could just see Frankie and me walking there after church services and it brought him comfort. Of course, it was the usual bittersweet experience. Bitter to be picking out a place to be buried in at 48 years old.

But Tim somehow made it enjoyable. We were looking at plots with the caretaker and Tim laid down on the ground. He said that if he was going to spend eternity there, he had to know if it felt right! The caretaker assured us he had seen crazier things than that.

Tim told me that he wanted to be buried with a wordfind book and pencil in his casket. I said “Really? And what do you think you will do with that?” He thought for a moment and said “Good point, it will be dark. And I suppose it would be a bad idea to light a match in there. Can you put a flashlight in there too?”

So of course I promised him. Word-find book, pencil, and flashlight. Just in case he wakes up and doesn’t want to be bored. I love that man.

Tuesday, September 14, 2010 5:42 AM

Hello to everyone! The benefit committee has asked me to post some specific needs as this website is the quickest way to reach the most people. The committee people are absolutely knocking themselves out and dedicating lots of time to make this a big success for Tim. It is a celebration!

First, they are trying to sell as many tickets in advance as possible rather than buying them at the door. That way we have a much more accurate number for having enough food, etc. You can call the contacts for that, or we have tickets here as well.

If you have a box of old picture frames, we could use some simple 8 x 10 sizes for putting raffle gift certificates together. It is helpful to have any basket donations as soon as possible. It is a lot of work for Shirley to put everything together and label them so the less that has to be done last minute the better.

We have had excellent food donations but need vegetable and fruit trays. We could use all paper products — styrofoam cups, small plates, large plates, napkins, and forks. There has been a shotgun donated ($500-$600 value!). There are $10 raffle tickets available for anyone interested.

After the meeting on Wednesday, there will be one more update regarding what kind of volunteers we still need for the night of the benefit. There is GREAT entertainment lined up. You won’t be disappointed! Thanks, as always, for all your love and support. This is all so exciting and Tim is really looking forward to seeing all of you.

Emily, Spencer, and Parker are driving in this week for a few days and we can’t wait to see them. Stay tuned. End entry

I have decided to make Tim a surprise gift. His colleagues from Texas sent him a DVD of all of them saying hello, showing him the plant, etc. It gave me the idea of making a video for him. I enlisted his help and told him we are doing it for all our guests at the benefit, so he prepared a welcome speech as well as a thank you speech.

What he doesn’t know, is that in between I am going to video people from various aspects of his life, giving them a chance to say something special to him. With Tim not working as many hours these days, this is proving quite challenging for me to sneak around to tape.

Plus, I’m doing groups of people so that is tough to organize in and of itself. Part of me thinks I’m crazy with everything else going on, but it has become my mission. This party is the surprise 50th birthday party I may not be able to throw him. It comes from the depths of my heart and I want to shower him with love.

Especially difficult is taping Tim’s co-workers. I need to tape most things when he is at work. But of course, I can’t tape his work friends when he is at work, so that presents a problem. I’m not sure how I finally pulled it off, but I did get there one day.

As I was saying goodbye to them, one of his co-workers asked if he could talk to me. A couple of others gathered around so I was sensing he was going to ask me something that many of them were wondering. He asked me if I could help them understand where Tim was really at.

They were all reading our site and knew that the prognosis was grim. And yet Tim was there, day after day, still “taking stairs two at a time.” He was productive and pleasant. It just didn’t make sense to them.

I felt such compassion for them. And I knew I couldn’t really explain it either but I did my best. I told him that Tim and I found it confusing too. All we knew, was that the steroids were like a miracle drug. They made him feel and function much better, but we had been warned not to be fooled by them. They are telling us he is very sick, and his prognosis is not good. So that’s the best we can understand.

They shook their heads in understanding. I think that it was what they had already thought, but just needed to be sure they weren’t missing something.

Before I left the building, the General Manager showed me to his office. We sat down and he closed the door. We had a similar conversation. As best he could, through his tears, he told me what an invaluable employee Tim was. He explained that he would take a thousand Tims and run his entire company with them if he could. He assured me he was entirely sincere and wasn’t just saying nice things because Tim was sick.

But then he also awkwardly asked me why he was still at work. As much as he was desperately needed there, he said he wanted to shake Tim and tell him to go home and be with his family. I again felt such compassion for him.

I opened up to him and said that when this first started, I struggled with resenting how much time Tim spent at work. I was hurt because I couldn’t believe that was his priority. And yet with time, I had come to see it much, much differently.

I told him that Tim felt confident and alive when he was at work. He was battling a disease that was taking his life and he had no control over it whatsoever. When he walked through the doors at work, he was in control, doing things and accomplishing things, and making a difference in the world.

And most importantly, he was earning a living. That was monumental to him — and that was out of love for Frankie and me and wanting to be our provider. So I assured him that while it may seem crazy on the surface, Tim was exactly where he wanted to be as long as he was physically and mentally able — at work. We both seemed comforted by this conversation.

Friday, September 17, 2010 Guestbook entry from Frankie’s teacher

Hi! As Frankie’s teacher, I’d really like to take the time to read through your site. I give you my word that Frankie is in a very caring place while here at school! End entry

Frankie’s school has been amazing. The principal and social worker do an incredible job. His kindergarten teacher was beyond delightful. At the end of first grade was when Tim first was diagnosed. His teacher was supportive and alert to Frankie’s questions and needs.

Now he is starting second grade. This year’s teacher is no different. I will consider her a dear friend by the time this school year is out. She talked with me about writing this entry, agonizing over what to say and even how to sign her name. She need not have worried. She was another angel God sent to us.

Sunday, September 19, 2010

My minister went on Sabbatical June 1st and will return on October 1st. While he was gone, people volunteered to preach to fill in. I had volunteered for today as I have preached a few other times in my life. (I graduated with a Bachelor’s Degree from Moody Bible Institute.)

At the time I signed up, I had no idea Tim was sick or how our lives would change. Most of the staff I work with at church are extremely supportive, especially because Reverend Miller has been gone for most of Tim’s illness.

Several times I was approached about being let out of this responsibility to preach that I had signed up for. I knew people thought I was crazy for still doing it, and I thought perhaps I was too. But I had this burning desire to see this through.

I truly felt like the message in my heart had to be spoken or I would burst. I know God’s Spirit works that way sometimes so I decided to trust it, in spite of my busy schedule.

It was a day to remember, and a service people would talk about for months. One of my best friends in the whole world, Summer, and I ran the service. Tim was there and many of our family. The sermon was about the depth of God’s love.

I started out talking about our church family and asked people to stand that had helped us in various ways — putting up the fence, making prayer shawls, bringing meals, shopping for us, praying for us… Of course, by the end, almost the entire church was standing. It was quite a testimony to the way God was using them to minister to us.

The basic premise of the sermon was that if God had a wallet, my (your) picture would be in it. I showed several pictures of Frankie on the PowerPoint screen to demonstrate how gushy parents are when they brag about their children. Then I drew a powerful conclusion that God finds us delightful, in spite of knowing our darkest secrets.

Later in the service, I sang a solo about trusting God as the “Shepherd of My Heart.” Later, Summer prayed for our family. I believe what moved people was the genuine and open spirit that we were there with.

Everyone in that building knew about our situation. Everyone knew Tim was sitting there. Everyone knew that Tim was dying. Tim knew that he was dying. We laid it out for everyone to see, and then we still could testify to God’s amazing love for us and the trust we had in God’s guidance and transforming power in our lives.

No mistake — we were coming from a deep, dark, struggling place and could still love the God of our faith. It was very moving, to say the least, and as I said, people talked about it for months. I knew in my heart that I did the right thing. It was a message that just had to be given.

Sunday, September 26, 2010 9:49 AM

My goodness, it has been ages since I have been able to update this. I apologize. I know you understand our lives are crazy, but I really wish I could do things more consistently. I will try to remember the details as best as I can.

First, let me update you on Tim’s health issues. On Wednesday, he had his usual weekly visit from Beth, our Hospice nurse, his vitals were normal and things remained status quo. By the way, Tim had increased his work to four days a week, and most of those are full seven to eight hour days. He had also gained eight pounds in one week, but the bloating is still not problematic.

Wednesday night, about 3:00 AM, Tim awakened me because he was having difficulty breathing. He could breathe, but only on a shallow level. He complained of “pressure” in his upper chest. He was unable to move in either direction in bed and had to remain perfectly straight and flat.

Of course, he didn’t allow me to call Hospice until the morning… I spoke with a couple of Hospice nurses Thursday morning. Their thought was that with the weight gain and his bloated stomach, the fluid was beginning to push his lungs up, causing him difficulty with breathing.

A fluid drain would be a Roswell procedure so they would set things up with them. Late Thursday morning when we spoke to Roswell, they said they couldn’t get him in until Friday morning at 11:15 AM. I was going to push to get him in right away but Tim was rather fearful of the procedure and didn’t want to go anyhow. He felt he could live with the discomfort another day although he didn’t move much from the bed or couch all day.

Thursday night was another restless one for both of us as Tim’s symptoms increased. We went into Roswell Friday morning and were sent to ultrasound which is where they do the drains. They use the images to navigate where they go, however, much to everyone’s great surprise, the ultrasound showed very little fluid. It did not warrant a drainage procedure at all.

In fact, there wasn’t even enough fluid to allow such a procedure. The doctor did an ultrasound on his back and again saw little fluid, however, they were suspicious of pneumonia (boy did I feel bad!). He called Dr. Hahn’s clinic and we were sent over there. There he saw our PA from the old days. She sent him for a chest x-ray that came back negative also. They did an EKG which also came back normal.

They gave him an IV push and pain meds. They asked him to start taking his anxiety medicine again and gave him an 800 mg script for Motrin for inflammation. We were there until 3:30 PM (yes, the day of the benefit)!

When we got home I spoke with Hospice Beth again. She was as shocked as we were, as all indications led to fluid. Sooooo… the good news was, all the tests were negative, the bad news was, we don’t know what is going on.

Anxiety/stress may certainly explain shortness of breath to some degree, but that does not explain the weight gain and bloating… So next week we have to decide where to go from here, basically, whether we will pursue more answers, or continue to treat the symptoms only.

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