Final Bill5107 Update (see pg 10)

[jens22]

Ican't imagine how hard it is to watch Bill frustrated and weak. I always picture him as this strong Boy scout master who could build anything. I hope he is still giving you some laughes and light moments. He gave a lot to me through this horrible disease. Prayers coming your way from Long Island.

[live2jett]

Can't stop thinking about you all....Missing Bill's storytelling...

[Guinevere]

And I'm 4thing it!! Your wit and humor are very missed here, Dude.

[Lois7718]

Things have not been so good this week

Monday I called to set up appt. with onc. only to discover he had one scheduled for 10:30. Who knew? Rehab gave me grief for short notice but said they'd get him ready. Got there only to find it had been cancelled. Finished up my visit there with the social worker who informed me that insurance would eventually stop covering care their for "failure to make progress....."

Talked to reception at onc who said the doctor would call Bill later. I asked them to call me. I got a voice message to call and schedule an appointment for chemo when he was out of rehab. If I had any questions I could call back. YEAH...I got questions....Like who's steering the dang ship! Finally talked to the doc in person he was surprised to find I thought Bill had deteriorated (he had thought he was doing better...don't know how he thought that). But said he would continue to be the focal point and would get the PET scan and follow up appointment in place. Visit was rough, Bill had 2 bad episodes, one of which really seemed to bother Thomas so I had him take the dogs for a walk around the building. Later the 12 lb dog scared the bajeebers out of the nurse when she came in and he barked at her.

Tuesday: Between work calls, scheduling the PET scan and finding out my car was ready to be picked up (with over $1K in repairs) I got 3 hang up calls from rehab. I called to see what was up. None of the staff had called, he seemed to be sleeping at the moment but had been seen with the phone earlier. Oh and by the way I might want to consider aligning their paper work with his advance directives. Took care of that detail when I arrived after dinner. Bill was anxious to see us when we got there....said he wasn't sure we were coming Also made me come close so he could tell me not to say any phone numbers or SSN's where anyone could hear and that he wasn't paranoid.....

He was in and out of coherancy, but ate half the ice cream I had brought him and was able to laugh at his "really active imagination" when he realized his scouts really weren't sitting on his shoulder... Much harder to watch him drop his beloved laptop on the floor and then spend an hour trying to log in......He so wants to be in touch with you all and talked about meeting up with Kathryn and trying to get to Saratoga.

Wednesday: The nurse from rehab called to see if he was still having the PET scan next Monday and to make sure I understood what the advance directives meant. Yeah, I know what they mean. Withing 2 weeks of helping my dad complete his he was gone....I know what it means, I know what it looks like and it's breaking my heart but it would break my heart even more to watch such a vital, stong, intelligent man linger with a shell of a life. She also see's where he has declined since he arrived. His blood work was showing beginnings of dehydration, they had given him some additional meds for since he seemed particularly twitchy/aggitated and was not responsive/coherent to questions.

Before I got there after dinner I got another call....He had fallen out of bed. No apparent injuries and they didn't think he had hit his head but would be monitoring his vitals frequently. Apparently he had been extremely fidgity/twitchy at shift change and had lowered the bed to it's lowest level (well below the knees). When they found him he it appeared as if he had sat up and slid off the bed leaning against it. When I arrived the nurse said she'd been visiting him and he had told her how he went to military school and grew up locally....none of which was remotely true. He spent most of our visit in an alternate reality getting angry/aggitated when we couldn't see/hear what he did and just as angry if we tried to play along or comment on his "active imagination". He nearly swated me across the face at one point in his aggrivation...to be fair though his depth perception is out of wack. On a good note he did drink about half the chocolate milk shake I had brought for him. I started the paperwork process today for 10 paid days of FMLA. Life is a roller coaster.

[tammylayne]

Oh Lois....I am so saddened to hear this news...I don\t know what to say.

Please know that so many of us here are pulling for Bill, and of course for you and Thomas. I hope you have some good resources and support in place for you, it sounds like this is a very bumpy and emotional ride. Please promise that you will reach out to everyone around you that is able to help and give support.

I am sending you as many positive thoughts as I possibly can,,,,and many gentle hugs to all of you.

[some]

Lois,

I'm so sorry. I can only imagine how hard this is for you. It's not right, just like everything that goes along with the big C. I pray for you and your family. Hope that's ok with you.

Sincerely,

Serena

[ams5796]

Wow, Lois, you're a strong woman. This is beyond a tough situation and completely unfair. I will be thinking of you and your family and hoping that things can turn around. No one should have to go through this.

Ann

[michelle c]

Oh Lois, I'm so sorry that you are going through this and that Bill seems to have deteriorated. Are they giving him any additional meds which could be attributing to his decline in mental state?

You have so much on your plate, just wish I could do something to help. You are such an amazing caregiver to Bill and it must be so difficult for you to have to deal with everything. My love, thoughts and prayers to Bill, Thomas and yourself.

[RixInPhx]

are you getting copies of his labs?
The dehydration issue just isn't right, it's the major thing that hospice can and should control.

Bad electrolyte levels can result in confusion, so I would make sure those numbers are in order.
Poor liver function can also cause confusion, and is often accompanied by a slight odor of ammonia about the patient.

Sounds like you need to ride the Onc or his PA/Nurse daily, since he is at the helm but not telling you, first-mate, what's going on.

Have any of his adult scouters come to visit? Perhaps bring well-wishes or pics or some crafty project from the boys themselves?

Stay strong and god bless you and yours,
-Rick

[Lois7718]

I don't really think it is the meds. I think it is whatever it is in the membrane of his brain that is causing the severe headaches........each one seems to weaken him further. And they've been around since before any meds were changed.

While in the hospital one of the nurses had asked if his being angry/argumentative with me was new. It really made me step back and look.

When he was diagnosed with the recurrance I remember gearing up for him to be "cranky" on a cyclic basis due to the chemo. Looking back I think it's been more pronounced this time but I had attributed it to the chemo not taking it personally. However he had been much more impatient with Thomas this time around.

[Staci's team]

Lois, Staci and I think of and talk about Bill every day....but we also say our prayers for you and Thomas as well. Swinging lots of chickens here, but most of all we're just wishing you and Thomas could see some of the Bill you know and love instead of the one who's going through all of this.

Many hugs from OH to CT....


Chris

[michelle c]

It was just a thought, I know that some meds can affect a patient's mental state. It sounds like Bill is very frustrated with it all....who can blame him? Hoping for better days ahead for you all.

Love and hugs,

Michelle xox

[aussielones]

Thinking of you Lois and Bill, it's just awful what you are going through.

[Phuong]

What a scary and frustrating time. I hope things get better for both of you soon.

[Kathryn in MN]

My heart breaks to hear how hard this is right now for all of you. Now that I'm the one up late night every night with pain from these darn bone mets, I really miss the occasional late-night chat. Please let Bill know I am thinking about him and praying for all of you.