Bitter & Sweet; A Family’s Journey With Cancer

Chapter Thirteen: Extreme Roller Coasters

Thursday, September 30, 2010, 1:17 PM

On Monday night, Colin brought home “Louie,” yet another addition to our family.

He is very beautiful but Taffy keeps her in the basement most of the time. He totally brightened Frankie’s spirits! I was sitting on the floor when we let her out of the carrier. He came over, crawled on my lap, and started purring. I knew he would fit in just fine here.

Tim has worked partial days Wednesday and Thursday. I have a call into the doctors just because I am curious about what the possible causes are for his symptoms now that we know it is not fluids… keep praying.

Monday, October 4, 2010, 7:04 PM

As usual, this update is long overdue… life can happen so quickly around here and before I know it there is so much information that I haven’t been able to get to you! Thanks for your patience…

Tim had a pretty rough weekend. He was very uncomfortable in any position he tried to sit, stand or lay in. He began to take pain medication for the first time. His breathing was very labored also. By Sunday, I was VERY concerned and called Hospice back again. A nurse came out and that was tremendously helpful.

Today, our regular nurse Beth came out as well and was also tremendously helpful. So here is the best I can do to summarize. They took Tim off of the pain meds he was on and put him on methadone twice a day (morning and night). This is a narcotic that has fewer side effects than others. (Tim was complaining about feeling exhausted and out of it while wanting to jump out of his skin at the same time.)

In between doses, he has a morphine equivalent for breakthrough pain. He has not needed to use that since the first night. He was given foam wedges for sitting which has helped him a lot with comfort also. In addition, they gave us a foam insert for his bed which should also help relieve the pressure he feels from his enlarged belly.

Beth was just here last Wednesday and she was a bit surprised at Tim’s sudden turnaround. On Wednesday, his stomach was enlarged but soft, today it is hard throughout the whole area. On Wednesday, he had no swelling at all in his legs, now he is swollen from his ankles up to his knees.

Apparently, this is very rapid for fluid gain. One side of his lungs is now quieter than before. His blood pressure and heart rate were both higher than usual. All of these things are strong indicators of fluid. Deciding whether to attempt another drain at Roswell is based on two factors — breathing and pain. The new meds should control both, if they are unable to, a drain would be considered. However, it is not preferred because often fluid is drained only to return in 24–48 hours.

She also noticed his coloring was off. She “couldn’t quite put her finger on it” because he is not pale, but the yellow tone is not the typical color associated with jaundice either. (I agreed when he was jaundiced it was different.) His color is noticeably “off.”

Tim also can only eat very small quantities. There is little room left in his belly for his stomach so it makes sense that he eats less. While he tries to keep liquids coming, she said we shouldn’t “push” them either. I expressed my concern over the August episode when he was critically ill due to dehydration. She explained that these changes are “expected” rather than “acute” which relieved some panic I was feeling.

He has also experienced a lot of confusion and at times even delusions. This may be due to the pain medication, but it may be due to disease progression. The next week will be critical. The hope is that his body will adjust to the meds and he will be pain-free but without that loopy kind of thing. But again, we will have to wait and see.

She has put an order in for a massage therapist to help relieve some of his backaches and also for compression stockings. Yeah, you got to love those, right Karen? (Karen is my friend that has to wear them.)

What this all means is another major change in our lives here. Because of his confusion, Tim needs 24-hour care now, not a nurse, but he should not be left alone.

I also now manage his medication completely as he has been confused about when he has taken pills or forgotten them. We also have to keep the medication stored away because of the narcotics. Tim could accidentally overdose when in a confused state.

He is now pain-free but sleeps most of the time. It is hard for him to have any meaningful conversation. Please pray especially this part will improve by the end of the week.

We will need you now more than ever, I am canceling everything I possibly can but still have work obligations. If you would like to be on my call list to come and sit with Tim, that would be very appreciated. Often times I need help spur of the moment.

Colin is an immense help but he is also working and helping tremendously with Frankie. As always, thanks for your love and support! End entry

Even as I read this over again, I am shocked at the turnaround of events. Every one of these paragraphs seems like a sudden, drastic change. That feels crazy to say when you’ve been fighting stage IV cancer for four months. And yet it seems drastic and like it occurred almost overnight.

What just happened? What just happened??

Wednesday, October 6, 2010, 10:20 AM

Beth (Hospice nurse) is coming again today, they sent compression stockings yesterday so he’s been wearing those. They seem to help once you finally get them on.

Tim was a little better yesterday — could walk a little without dizziness. Our minister came by and he was able to converse about 15 minutes before falling asleep (a big improvement).

The nights are brutal though; it has been several nights in a row now that Tim hasn’t slept through the night. He gets up several times for different reasons.

Last night was especially tough. I finally got up with him at 3:00 AM and laid on the couch. Pretty soon Frankie joined us so I think we are pretty much exhausted.

Tim sleeps most of the day on and off, but I think he needs to do that in addition to a solid night’s sleep. I’m wiped out but am not able to nap through the day so I start to see stars after a while.

We will see what Beth says today. I know she wanted to put him on a night med but Tim had it before and didn’t like it. Perhaps today we can talk him into it… Thanks for all that support.

Wednesday, October 6, 2010 Guestbook entry from my supervisor

Hi Darcy, Sounds like things are rough. Please call me if you just want to talk…Thinking of you and your family often… Do you need any help with your clients? Love ya. End entry

Ah, my clients. That is a tough one. I am still thinking that I need to be available for Tim for at least several months. How do I take time off now when I need to figure this out longer-term? I don’t have the kind of job where someone else can step in for a shift.

My job is based on the relationships that I have built, but also must maintain. Sometimes I think I am crazy to try and work. And yet in a very real way, my office is where I regain my sanity. In that room, my life makes more sense. In that room, I am more confident and feel like I can see where my efforts make a difference. I can close the door and pretend the other part of my world doesn’t exist for a while.

When is the right time to take a leave of absence? This is a decision I struggle with daily.

Friday, October 8, 2010, 9:45 AM

So much life gets lived every moment it seems… Don’t know where to start.

Tim continues to be wakeful throughout the night. It is so hard to explain. Throughout most of the day and night, he dozes on and off, sometimes for 30 seconds at a time. He usually goes from the bed to the couch. He may settle in bed, look sound asleep, and by the time I walk to the next room he is up again.

Sometimes he is aware of his surroundings while other times he is confused. He is frustrated because he can no longer manipulate a computer mouse (although he will sit in the computer chair and promptly fall asleep sitting up). He also says he is unable to turn a light switch on or off.

Yesterday Colin was mowing the lawn. I didn’t even hear Tim go out the door but he went outside and promptly tripped over the hose and fell. I heard him yell and went running. Colin said it wasn’t a bad fall but he was a bit muddy.

Thank God he didn’t injure himself, but safety is becoming more and more of an issue. Last night, around midnight he got up a couple of times and tried to get ice and water from the fridge door. He just watched the ice spill over and over then the same thing happened with the water. Then he repeated the behavior ten minutes later.

It is so hard for me to know how to handle some of these things. I don’t want to insult him or dampen his spirits by encouraging him not to do ANYTHING, but his perception and balance are so off.

I don’t think it is very safe for him to do anything. Yet literally all night he gets up and down, walking aimlessly. You will swear he’s in a deep sleep and suddenly he’s standing next to you.

About 10:30 PM last night, I went to get my neighbor who is a nurse. I was concerned about Tim’s breathing. She said it was like sleep apnea. He would take two breaths and then there would be a pause. She demonstrated the type of breathing that I needed to be worried about so I knew what to look for.

At 2:00 AM, I called Hospice anyway. I had the nurse listen over the phone. She said he was pausing up to 15 seconds between breaths. She called the doctor and we got one of his meds increased. (Tim will not take one of the meds they want him to so this is one he is amenable to.)

The regular nurse is coming back today (that makes four visits this week for Hospice nurses). She may want to recommend Tim go to the in-patient Hospice unit. Tim is very opposed to this. They would like to get his sleeping and agitation under control.

I want him here at home just like he wants to be here at home, at the same time, I’m scared to death. He fell yesterday and I was here! I woke up at 2:00 AM one night and saw him standing on a step ladder in the bedroom trying to change the smoke detector batteries.

I’m VERY sleep-deprived now, so… I will keep in touch with everyone as things unfold. I’ve got overnight coverage tonight because if I don’t get some sleep I think I will completely crash.

It is hard to ask someone to do that though because you basically have to be alert all night long. PLEASE, PLEASE, PLEASE keep praying.

This is getting sooooo hard (and I thought it was hard before!).

Love you all.

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