Bitter & Sweet; A Family’s Journey With Cancer

Chapter Fourteen: Hospice

Friday, October 8, 2010, 1:37 PM

They are in the process of admitting Tim to the Hospice unit. It will take a couple of hours, the doctors will know more this weekend but the feeling is less than two weeks.

Tim is painfully trying to come to grips with this.

End entry

What a day. It started off this morning with the doorbell ringing. It was Tim’s former wife. She was apologetic as she had asked her son to let me know she was coming but he had forgotten to.

Anyhow, she and Tim spent some time in the living room together. I have no idea what they talked about, but I am sure it was very healing for both of them. She was crying when she left. I felt sympathy for her but was so glad she had come over.

Later, Beth (Hospice nurse) came to check in on Tim. This was the grueling part. Tim was pacing the floor while he was talking to her. (The Colvins are known pacers.)

He was asking her various questions like “Why is my stomach distended?” She would say “Because your body is filling up with fluid.” Then he would say “Ok, what do we do about that?” And she would say “There is nothing we can do about that.”

And there were several questions just like that. I sat on the couch and watched him pace as he processed the answers to his questions. Then he stopped pacing. He looked her square in the face.

He said “Oh my God, this is it. I really am dying, aren’t I?” And she said, “Yes, Tim, you are.”

I can barely even write about this. There are no words to describe what it is like to witness a human being coming to a realization such as this. Then he said something that thoroughly surprised me. “Damn that Dr. Marco.”

I didn’t even remember the name. When I questioned Tim, he reminded me that he was the first surgeon at Roswell that we met with who we thought would operate. He was the one that explained to us how dismal our situation was.

“He said I had five to seven months and that son of a bitch was right.”

I hadn’t remembered that but when I later looked back at my notes, he was entirely accurate. Tim had not displayed much anger in the last five months, very little bitterness, and hardly any self-pity. This was one of the only statements like this he made. And I understood completely it was not the doctor truly, but the most classic case ever of “shoot the messenger.”

Tim then turned to me and asked me in an accusing tone why I was so okay with this information. Wasn’t I upset about it? This occurred one or two other times. I could immediately break down sobbing though and then he knew that I was just mustering up courage every moment of every day to cope with the knowledge that I was losing my husband.

It was all a big front and he knew it.

Beth suggested that Tim go to the Hospice in-patient unit so that we could attempt to get him back on a regular sleep cycle. The lack of sleep was adding significantly to Tim’s disorientation. Quite frankly, I felt it myself as well. I got more sleep than Tim, but not much more. I felt like I was on some loopy drugs at times.

Tim did not want to go inpatient. He wanted to be home. I didn’t blame him. He sat on the couch and I was in front of him, on my knees, looking into his eyes. I told him how much I loved him, but that I was unable to continue to take care of him on my own. I was exhausted beyond belief. But worse than that, he had fallen on my “shift” and I couldn’t prevent him from hurting himself. I knew much worse could happen if he got ahold of his medicines.

I realized from the physical position I was in, that I was on my knees, begging him to go to the hospital. And more importantly than that, I was begging him to forgive me for failing him in his 11th hour.

Without all those words being said, we both knew what was meant. And he tenderly told me he would go, and I knew he forgave me for being human when I wanted to be so much more for him.

I now went into work mode. I knew I had to call all my clients and tell them I was taking a leave of absence. I had arranged with my supervisor to give them her number if they felt they needed sessions while I was out of commission. It was close to 30 calls for me to make.

It never even occurred to me because of confidentiality that I could ask someone to make those calls for me. Plus by the time I gave up all those phone numbers, I could make the calls myself. So I started in.

But I could hear Tim pacing again in the living room and his agitation was growing. At one point I heard him say angrily “What I need is MY WIFE. And I need her OFF THE PHONE.”

I would rush in and try to soothe him. I was trying to explain to him that I had to be away because once I got done with this, I would not ever have to leave him again. I would be DONE with work. So longer-term gain for this short-term pain of being without me.

Looking back, hindsight is always 20/20. I wish so badly that I could take it back. I would have not left his side as he was trying to accept what was happening to him.

I made the best decision I could in the moment with tremendous stress around me at all sides, but never the less, I am haunted by Tim’s voice and my not being there for him.

At one point, Tim summoned Colin downstairs. He hooked his arms with him and paced around the living room. I only caught snippets of their conversation. Tim told Colin “I am leaving now Colin.” Colin said, “Yeah, I know.” And Tim said, “No, I mean I am really leaving, for forever.” And Colin said, “Yeah, I know Dad.”

I’m not sure how many times that conversation was repeated, but it was a very poignant moment, and a very private one I felt odd about overhearing.

I had immediately called my family when the decision was made to take Tim in, and in normal form, they dropped everything and came to the house. My sister arrived before the ambulance came.

Somehow, I had the presence of mind to ask Tim if he wanted to glance around the property he had worked so hard on over the last decade and he seemed delighted at the idea. Janet helped me dress him and get him ready.

We put him in the wheelchair and pushed him around the different parts of the yard. We chatted a little bit about what it looked like when we bought it and all the changes and improvements we had made.

While very emotional, I think Tim appreciated it. When the ambulance came, I was very disappointed they would not let me drive with him. I thought about making a stink but decided to cooperate as Tim seemed able to handle it without me. What a day.

Friday, October 8, 2010 Guestbook entry from my high school friend

Darcy, Your journal entries just break my heart. I really wish I could absorb some of your pain. I’m thinking of you often, for whatever good that does. I hope you can get some rest and that there is a respite for Tim soon also.

Friday, October 8, 2010 Guestbook entry from our church family

Dear Tim and Darcy, You are remarkable people, and your love for each other and for the world has touched many lives. Let God’s love surround you during this time and always.

Friday, October 8, 2010 Guestbook entry from my Chicago friend

Darcy, Tim and Frankie, You continue to be in our Mishaberach. A prayer for the healing of body, soul, heart and peace with all that lies ahead. I love your strength Darcy, but then I always have.

Friday, October 8, 2010 Guestbook entry from Frankie’s friend’s family

Darcy, I wish I could take some of your pain away. You and Tim are so brave and it is just heart wrenching hearing about this awful journey. Words cannot express how sorry I am that this is happening to Tim and your whole family.

Friday, October 8, 2010 Guestbook entry from Tim’s cousin

Dear Tim and clan, I am very sorry to hear about your predicament. Know that you will be truly missed and heaven will be even better for your presence there. Selfishly however, we want you to remain here and make our lives brighter. I sincerely hope that your pain is tolerable and that you find some peace. Anyway, know that you are deeply loved and thank you for sharing your life with us.

Saturday, October 9, 2010 Guestbook entry from our cyber friend

Darcy, Tim and family, Sending prayers for healing, comfort and understanding. The Lord knows what you need so I’ll let Him figure out where to help, I’ll just put in my order. Amen.

Monday, October 11, 2010, 7:38 AM

So very hard for me to even remember the course of events to update you all. Hospice has computers but none of them link to the internet. Everything has become such a blur but I will do my best to get information to you.

This continues to be a baffling roller coaster ride, only the ups and downs are more extreme and come more quickly. Bottom line, after reading labs, etc., Tim is suffering from delirium due to severe sleep deprivation. (I was getting close to that myself.)

This is the most common reason people end up getting admitted (not pain or breathing issues but delirium) and also the toughest set of symptoms to treat and get under control. His sleep deprivation is caused somewhat by the disease, but more so by Tim’s personality.

His father died at a young age of cancer and he spent the end pacing the floor saying “I’ll sleep when I’m dead.” Tim outright has told us that he plans to repeat that pattern.

We (medical personnel, etc.) continue to try and explain to Tim that this attitude is detrimental to his health and will hasten his death. His body (like ours) must have an extended, solid sleep pattern at night.

As of now, this is slowly improving with tweaked medication at night but it takes a while to get the right doses down. Plus because he was in this condition an entire week, it will take longer to correct. The doctor says that if he continues to do this wakefulness continuously, they will eventually have to heavily sedate him, which means he would no longer have responsive contact with others.

In addition, they discovered his hemoglobin is a third of what it should be which means his body is deprived of the oxygen it needs. (It is not the type of condition that can be resolved by just giving him oxygen, but he does have access to it whenever he feels he needs it.)

There is no way to be sure how this condition developed but the best assumption is disease progression. The only resolution to this is a blood transfusion. If he got one, he would breathe a bit easier if it is successful. This would require a trip to the hospital by ambulance, then a return trip to Hospice. It basically takes all day.

At one point, Tim was coherent enough to have a conversation with the doctor and me about this. Of course, there is no “right” medical decision regarding this so it came down to our preference. If Tim was able to make the decision himself, I am much more comfortable with that.

Tim said his priority is coherency. The only thing that will help is sleep control. So we are going to fix that first, then he will face the decision about the transfusion. We are looking for solid sleep most of the night; then it has to stay that way. After discussing his night last night, we will revisit this conversation.

I have to get back to the Hospice unit. These are the facts, but how Tim has been living this out is another very long entry but also very important to this whole story.

By the way, Tim is in room 131. Visiting hours are 24/7. End entry

Once again, there were a few people who offered to stay at Hospice to give me a break. It was such a dilemma for me. Things were changing by the minute so I hated to miss any second with him.

I already had to be gone on Saturday, the morning after he had been admitted. For whatever reason, I had decided it would be a good idea to highlight my hair. Unfortunately, I streaked it orange-red and needed it fixed in a desperate way. I had someone to do it, but it took a couple of hours.

Tim had people call me every half hour or so. He was so upset that I wasn’t there. My nerves were completely shot by the time I returned. I truly wanted to not leave his side, but I have a son to take care of also. And I’m supposed to take care of myself somehow so I can continue to care for everyone else. It was maddening.

Some of Tim’s family came in for a shift. It was quite stressful. They hadn’t been there for a while and when they walked in, it felt like they were thinking we had no idea how to care for Tim.

My family that had been keeping close vigil was devastated by their comments. They (Tim’s family) thought the room was dirty and demanded housekeeping be brought in (at 9:00 PM).

They were upset that Tim was lying there uncovered and exposed. (That’s ok, they would soon discover that Tim would remove anything on him within minutes if they tried to dress him again.)

I was somewhat used to their demeanor, but when I tried to explain what things were agitating to Tim, I was told “WE can handle his moods” and was cut off from further conversation.

That upset me. It really had nothing to do with what I could handle, or anyone else. It had to do with the medical plan we had set up carefully with his doctor. Tim’s agitation was keeping him from resting.

And his lack of rest was going to hasten his death. I wasn’t trying to keep him from being angry because I couldn’t handle his moods.

I drove home bawling.

However, I actually had a conversation on the phone with the Hospice staff. They were wonderful as always. They saw everything going on and knew how dedicated my family and me are. They actually asked me if I wanted to have them removed from Tim’s care.

I said no, that in spite of their manner, they loved Tim and wanted to be part of his care. Hospice made it crystal clear that I was Tim’s wife and that at any time if I became uncomfortable, they would step in and intervene. They made me feel so much better. I guess because an “objective” entity validated me and my family.

It was obvious to them how much we cared for Tim and advocated for his life at every moment. They understood the big picture.

The irony didn’t escape me. Some of Tim’s family resented me and felt like I wasn’t good for him. Maybe they even felt I tried to keep them from him. The actual truth was, I was the one that insisted Tim’s family have their time with him.

In spite of how they disliked me, I guarded their relationship with Tim. I might have gone home and cried my eyes out, but I didn’t stop them from being with him.

Monday, October 11, 2010 Guestbook entry from Tim’s family’s friend

My prayers continue to be with all of you… but especially you, Darcy. I know exactly how difficult this is… let others do for you so you can spend as much time as possible with Tim. Surround yourself with those that love you both… and try to let God do the rest.

Tuesday, October 12, 2010 6:42 AM

Computers are still down at Hospice. I just snuck home for a couple of hours to try and get some things caught up… There is no way to even explain how the days go.

Tim has been “the man with a plan,” or the guy with surprises. Unless you have spent some time at Hospice, I probably can’t give you a clear picture. Tim goes in extremes — like near death, then suddenly sits up and wants a meal to eat.

There have been some very, very funny moments.

Like our minister coming to give us both communion. We were gathered in a large semi-circle and the sniffles filled the room. After the wine, Tim looked up and said “I’d like a chaser.” The room went from sacred and somber to everyone cracking up.

Or the time he told me he wants to be buried in a hat — NOTHING else. Eventually, he let me know what he wanted to wear but we got a good chuckle out of that.

As far as I go, Tim can go from needing me directly in front of him at all times to telling the family to “Please announce her before she comes in the room, she tries to micro-manage me…”

It is exhausting — on every level possible.

Tim has a few times now verbalized a clear plan for accepting his death, not hanging on, and asking why he can’t go home to be with God. There are times the doctor was convinced he was on his way and then he would shoot up in bed again.

Yesterday he was able to verbalize he wishes to be in a sleep state. The doctor feels he has spoken this in many ways but his body just isn’t cooperating. She is hoping to help his body catch up to his wishes.

Monday morning brought an entirely different day. He barely woke all day, when he did he insisted on getting up to go to the bathroom. He is like dead weight now, no more following behind him as he slowly shuffles. He is too weak to even stand.

For the first time, I can’t understand what his groans mean.

This part has been very hard for me to accept. Yesterday I found out his job has taken his voice mail off and assigned his phone to someone else. Of course, this was the right thing to do but it nearly broke my heart. I guess I wanted to be able to call it and still hear his dedicated voice.

We will see what tomorrow brings. You are still welcome to come any time, day or night, but the atmosphere has changed from somewhat jovial to keeping a very, very quiet environment for him.

We have been selected as a benefit recipient on the 16th (how wonderful and humbling for us!) and they’d like us to invite everyone on their behalf. Not sure if I will be able to make an appearance or not.

“REGISTRATION FORM October 16, 2010 Doors open at 7:00 PM for silent auction items and the 50/50. The concert starts promptly at 8:00 PM. This year’s recipients are: The Darcy Thiel/Tim Colvin Family and the Ski Club Adaptive Ski Program.

“The Darcy Thiel/Tim Colvin Family comes to us from a member of the host committee. Tim has been diagnosed with stage IV gallbladder cancer and we will support this family by paying their mortgage for a number of months to ease their financial challenges.

They have been active volunteers in the community and are always willing to give back.” End entry

I don’t have a ton of regrets about this time period with Tim, but there is one that occurred this week at Hospice. I was on top of most things regarding him. I always asked questions, knew the medical plan, and knew what medicines he was getting and why.

One night when I was by myself with Tim, two nurses came in that I hadn’t seen before, which meant they hadn’t taken care of Tim before either. They came in with two shots for him. I asked what they were.

I explained to them that he had that medicine before but it was given to him through his mediport. They informed me that I was misinformed. That medicine was not even available in that form.

I argued with them, quite certain of what I was saying. I got the old “I have been working here 20 years and that medicine has never been available in mediport form.” They were so adamant and condescending, I actually caved and assumed I was wrong.

I watched helplessly as they had to move Tim on his side to give him the shot. Tim moaned in pain as I cringed. Then to my horror, they had to move him completely to the other side for the second shot. More pain for him.

I was in tears. I couldn’t wait until they were done and I could climb back in bed with him and comfort him. As they left, I again asked them to re-check their records.

A couple of hours later, the nurse returned and said that she was surprised to find out that I was indeed correct. I was so disgusted with them. How dare they walk in on a shift and adopt such a-know-it-all attitude? How dare they walk into a shift and not carefully read their patient’s records?

But that was nothing compared to the disgust I felt with myself. I am Tim’s advocate. I knew in my heart what I thought was right, but I let them intimidate me.

And Tim suffered because I wimped out.

Now I know in the scheme of things, this was a relatively small thing. But it was monumental in my mind. I resolved again to never doubt my instincts and fight even harder next time.

I knew I was wearing out but this was no time for slacking in fortitude.

Tuesday, October 12, 2010 Guestbook entry from Tim’s former colleague

Tim, people have kept our office updated on your journey. We made it to your benefit, but you had already left. There was a corner of employees, laughing and remembering all the good times we had. Wish you were there for that part, the connections we have made will last a lifetime, and you are part of those precious memories. Still hard to grasp your illness. I will always remember you from when I first started 23 years ago, so young, full of life, and quick-witted. (I think we all view ourselves as if we were still 25.)

Still marvel at the wallpaper job you did in our foyer. You said the transition piece that wrapped up the stairwell was the most difficult piece you had ever done. You did it perfectly, and I always point it out to guests. Well, my friend, I hope it goes well and I will see you again!

Tuesday, October 12, 2010 Guestbook entry from my high school friend’s parents

Darcy and Tim, As you know, the journey can be mystifying, frightening, ever-changing, and most emotional… find time to step back for a moment… take a 15 minute time out… treat yourself to a specialty coffee/tea and a forbidden pastry/ donut/dessert… close your eyes… and thank God for being there along the way.

Wednesday, October 13, 2010, 7:34 AM

Home again briefly to try and catch up on the absolute necessities. Frankie is hanging in there. He is finally starting to talk more to me. He has been scared and worried and we have been trying to talk through it.

Tim has not woken up in a significant way since Monday morning. He does wake up to go to the bathroom every few hours. Incontinence has started but he seems to be aware of this after it happens.

The bathroom issues are paramount to him so it has been quite a struggle. He is not strong enough to stand, and barely can sit up but somehow he communicates that he insists on getting up for the bathroom. I think he even has the staff baffled.

Yesterday at supper time he had not awakened for several hours, then he woke up, yelled at me, and pushed me. (Why? Because I wasn’t getting him to the bathroom fast enough.) What a stinker!

Of course, I realize he isn’t doing any of it on purpose but the whole thing is just so damned hard to keep living through. His daughter Emily is coming Thursday from Georgia.

Some of you have asked how to pray. I truly believe it is ok to start praying that God will take him. He has breathed out short sentences like “Why can’t I go home to God” and others that indicate he is truly ready but his body won’t cooperate. This is a situation where his young age is working against him.

If you are comfortable, please pray that he will achieve the peace needed to pass on to the next life; one where there will be no imperfect bodies; one where he will see the parents (including my mom) that he misses so dearly… Love you all.

Wednesday, October 13, 2010, 11:55 AM

Hello from the Hospice unit. Yeaaaah! The internet is up! I spoke with the doctor this morning (she’s wonderful by the way). She said there is once again a definite change in Tim.

He will not be responsive anymore, most likely though, he can still hear. He moans on occasion which is usually to let us know he is wet. We are continuously giving him reassuring messages that we all are here, love him, and that his family will be taken care of.

He is only on methadone and the steroid at this point. He needs no sleep aids. They are relatively certain the moaning is not from pain as he has not been in pain for almost the entire process.

The doctor said I didn’t need to make that frantic phone call, but this is clearly end-stage. Emily is doing her best to get here today, worst case she will be here tomorrow…

If anyone has a CD with mellow piano music, I think he would enjoy that. The nurses say that often relaxes them. When we went to Niagara on the Lake he thoroughly enjoyed a piano CD in the room.

So don’t hesitate at this point if you want to come. Soon another transition will occur where he probably will not want to be touched or hovered over anymore. That will so break my heart when I sense he doesn’t want me to lie next to him anymore.

Wednesday, October 13, 2010, 8:41 PM, EDT

I came home briefly to spend some awake time with Frankie.

When I left, they had given Tim some sleeping medicines. He had been groaning some and starting to look a little uncomfortable (although not in pain). Once he was settled, they put a catheter in.

He asked for it to be removed last Saturday but I thought it was time to give it another shot. He is so stressed by his need to go to the bathroom. I am hoping this will relieve more of his anxiety.

I have been meeting some with our church staff regarding upcoming arrangements. If anyone has any interest at all in doing a reading, saying a prayer, or reading a favorite story for the service, please let me know in the next couple of days. I am not requesting anyone do so, but don’t want to shut anyone out who has something on their heart and wants to contribute in this way.

Wednesday, October 13, 2010 Guestbook entry from our church family

Good Morning, Darcy, You are truly inspirational. All of us are indeed praying for Tim, but also for you. Truly, throughout the day, my conversations with God reflect just what you expressed in your message this morning.

Wednesday, October 13, 2010 Guestbook entry from my high school friend

Hi Darcy. I have quietly kept up on your journal and Tim’s progress but today felt like I just needed to reach out to you. I pray comfort for you in a time that I cannot even imagine.

I know that your faith in God will help you through this, but at the same time please remember how many people (friends and family) love you guys and are keeping you close in our hearts. I pray for Tim’s last days to be as peaceful and pain-free as possible and that you can also find comfort in that. •

Wednesday, October 13, 2010 Guestbook entry from my client

Dear Darcy, Tim, and family, We continue to pray that God will give you ALL an increased awareness of His presence with you. He is always with us, but at times we are blessed with a greater awareness of His presence. That has been and continues to be our prayer for all of you as God continues to reveal His plans. Jeremiah 29:11 is a promise and statement of fact! End entry

Interesting choice of verse to offer, the same one Frankie’s teacher sent. I know the people who sent it this time are also people of great faith. And people of great faith even after living through heartbreaking adversity, over and over again.

I have no idea what words like “hope” and “future” even mean anymore, but I have faith that we will figure it out and that God will walk beside us as we do.

Wednesday, October 13, 2010 Guestbook entry from Frankie’s friend’s family

Darcy, Thinking of you every second and praying often that God sends his angels to guide Tim home. Those are the prayers you want so I will do my best to keep them coming. Continue to talk to Tim and hold him near for as long as he will let you. Please take care.

Wednesday, October 13, 2010 Guestbook entry from our church family

Dear Darcy, I don’t know what else to say tonight, other than the fact that you are loved by many, many family members and dear friends who wish they could do something meaningful for you at this time. Whatever you need, of course you know, you can ask me. 

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