"Sticky" Schedule

Last Updated: 17 April 2008, 11:10PM

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Since I find that this blog is being visited by the public-at-large, allow me to explain just a bit. I'm a 56-year-old esophageal cancer sufferer. I have been diagnosed as having “Invasive adenocarcinoma of the esophagus with metastasis to stomach and lymph nodes.” I've had 5 rounds of chemotherapy and have started radiation therapy.

This blog was started to keep friends and family updated as to what is going on in my life, how I feel, when my treatments are, etc.

It is also a diary, where I try to get rid of my frustrations by pouring my heart out into these "pages." So, if you choose to read a little, be prepared for some "belly-aching." Now, how's that for a pun? Especially since I have a tumor in my stomach?

If you got here from a link on Sunni Maravillosa's web site, you won't find a scholarly discourse on Liberty and Freedom. However, since I do believe in Liberty and Freedom, my beliefs do come out in my posts, as evidenced by the link at the bottom of this post. As I said, this is primarily a diary of my life. But feel free to stick aound and browse to your heart's content, if you have the time.

This schedule will remain at the top of my blog until further notice. Any NEW POSTS will appear directly below this one. Claro?

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Notes
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My Short Term Disability paperwork came back stating that they don't want me working at all. So I won't be working until after the surgery.

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SCHEDULE
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3/21/08 - 07:15AM I'm hoping that I go in for my last PET Scan today.

3/24/08 - 02:20PM Lab blood tests.

3/24/08 - 03:00PM Consult with Dr. Himmy about lab results and PET Scan results. I should find out what is in my future at the same time.

Since I'm not working, I deleted my work schedule for now.

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MEDS
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Pain Meds Schedule:

Packer Candy – PC; Time Released – TR; Short Term - ST
Naproxen Sodium - NS

02 AM: PC-ST 5 mg.
06 AM: PC-ST 5 mg.
08 AM: NS 220 mg.
10 AM: PC-TR 20 mg, PC-ST 5 mg.
02 PM: PC-ST 5 mg.
06 PM: PC-ST 5 mg.
08 PM: NS 220 mg.
10 PM: PC-TR 20 mg, PC-ST 5 mg.None.

Blood Pressure:

• Enalapril
• Diltiazem

Anti-Cancer:

Round 1

• Cisplatin
• Docetaxel
• Fluorouracil

Round 2

• Carboplatin
• Camptosar

Anti-Nausea:

• Aprepitant, anti-nausea.
• Aloxi, anti-emetic, IV use only!

Others, or as Needed:

• Protonix, proton-pump inhibitor.
• Dexamethasone, steroid to reduce fluid retention.
• Lomotil (Lonox), anti-diarrhea.
• Mannitol, diuretic/laxative?
• Neulasta, Granulocyte colony-stimulating factor
• Lovenox, anticoagulant.
• Warfarin, anticoagulant.
• Mobic, non-steroidal anti-inflammatory.

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Need more info here, let me know, OK?
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DPC - De Pere Clinic
VLCC - Vince Lombardi Cancer Center.
ABCMC - Aurora BayCare Medical Center
EGD - EsophagoGastroDuodenoscopy

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Update and Obituary

Hello all,

I wanted to let everyone know that Dad's obituary ran in today's Green Bay Press Gazette. The link to the on-line obit is:
http://www.greenbaypressgazette.com/apps/pbcs.dll/article?AID=/20080504/GPG010301/805040782/1212

Ben and I and Dad's brother Bill and his wife Julie said our final goodbyes to Dad's body on Friday and watched him be loaded into the cremation retort. We included many sentimental items in the cremation, including photos of loved ones, a few knives, feathers, a choker that belonged to his best friend Rawley before his own passing, and a few other requested items. Ben and I also decided to place a lock of each of our hair into Dad's hands, so he was clutching a part of each of us as he was cremated. I think Dad would have really liked the uniqueness of this whole thing ;-). Ben and I picked up his ashes on Saturday. So his earthly vessle is now no more.

We also wanted to let everyone know that we have decided to have the memorial celebration this coming Saturday, May 10, 2008, from 3:00 pm to 10:00 pm. (People can come and leave as desired). It will be at Dad's home. Please call Dad's phone number or Blaney Funeral Home at 920-494-7447 for specifics, if you would like to attend. All family, friends and acquaintances are welcome. We will have Dad's favorite Mexican food catered, but please bring your favorite dish, if you are willing, so that we can have a variety of food to choose from. Desserts, side dishes, good ole Wisconsin comfort food, are all welcome. Also, because we aren't big drinkers and we have no idea what people's preferences are, this will be a "bring you own booze" event. It just makes life easier ;-).

That's all for now,

Amy

A memorial link.

H. Ben's Danish brother-in-law posted a touching memorial on his blog this morning.

Help me feel the joy through the pain

Hello all,

I want to sincerely thank everyone who has stood by my father, Ben and I through this very difficult time. You are all loved dearly by my father, and for that reason alone you are very important to me. I know one of the hardest things for Dad to handle throughout his illness was his knowledge that it was so hurting the ones who love him, to see him suffer and struggle and hurt. It truly pained him to know that his suffering was hurting us, but I hope that also means that he felt very loved, respected, and valued by so many.

Like Ben, I cannot really imagine my world without him. I am trying to keep thinking of all the good in him, all the good he instilled in me, but right now all I feel is hurt. There is a gaping hole inside of me that I'm sure will never heal. Many wise people have told me it will, but at this moment, it is so hard to believe.

Thank you all so very much for your love and support. No matter what Ben and I have been feeling in this ordeal, we have NEVER felt alone because of all of you who love my father.

Amy Malliett

So it goes.

I post this message from a house filled with grieving people. My father passed at 4:43 this morning. I can see him from where I sit.

I can't conceive of a world without him, and yet, here it is, unbidden and unwanted.

Another Update

Here's another update, in the spirit of keeing everyone informed as much as possible. Dad had more visitors this afternoon. His brother Bill, Bill' s wife Julie, and Dad's mother Marie all visited with Dad. While Dad was in and out of consciousness, he seemed to enjoy the company. Of course, I know it was a difficult shock for Bill, Julie, and Marie to see Dad in this condition because things are progressing much faster than anyone expected.

Of course, Dad has been joking around whenever he was awake, including "petting" Ben's cats with the grabber-claw thing he requested I get him (So that he can pick things up from afar from a laying-down position). He has also been stubborn whenever the opportunity arises. So, he's very much still himself ;-).

He has been VERY drowsy the last two days, and that seems to be getting worse. It is due to both/either 1) the pain medication he is on, and 2) the deterioration of his liver. When the liver stops functioning, it makes one's blood composition wacky, which will affect the functioning of one's brain. Dad's nurses said this may be beginning to happen. A hospice nurse will be here again tomorrow, so we may know more then.

I will briefly go back to Tampa from Tues - Wed, but I plan to turn right around and come back, given the current situation.

We will do our best to continue keeping everyone updated. If anyone wants to email me directly, my email is the same as Dad's, except that it's my name instead of his. So, that would be amy.m @ "our last name here" .com

If anyone would like my phone number, email me and I will provide it that way.

xoxox,

Amy

Home and entertaining.

Dad made it back from the hospital, but he's been very tried and mostly bedridden. He has been reading, and enjoying, the comments on the blog, but has not felt up to posting thus far.

Medically, things are not going well. His abdomen is still distended from fluid build-up discharged by the liver, and he was and still may be bleeding into his stood and urine. He is, however, on a pretty potent mix of drugs, so there shouldn't be much discomfort.

I don't recall off hand if Dad ever established just who the Stevens clan was for his blog audience; in case he didn't, I'll summarize by saying that they have been dear friends of his for many years. Many members of this family have been keeping Dad company this weekend (and for months before that, truth be told), and doing a very good job of it. It's a bit strange for me to wake up to the sound of laughter coming from Dad's room, but I can't imagine a scenario that would be more pleasant for Dad. Considering that my mother and stepfather have been visiting as well, this has made the house more crowded than I've ever seen before!

New Update

Hi All,

Well, as I'm sure you've imagined, Dad is still in the hospital. They MAY let him go home today, but that remains to be seen. They had to give him more blood on Tuesday, so they have transfused him twice. They are not really sure where he is bleeding.

I hate to say it, but they have said the dreaded word, "hospice." They said it is time to start discussing that, and that when they discharge him, it will most likely be with hospice services set up to come to the house once a day.

I spoke with the nurse last night, and she said Dad's Oncologist said "it looks like things are moving faster than projected," meaning faster than that 3 - 6 month time line they gave us one month ago. BUT, it may also be just a bump in the road and he may rally and improve again, so it remains to be seen.

Once again, he really appreciated your comments to the last post. I am flying to Green Bay on Saturday, and will stay through Monday evening. We'll be able to post more frequently then, cause I can type while Dad talks ;-).

xoxox,

Amy

Update on Dad's Hospital Stay

Hello all,

I spoke with Dad a couple times today. He is not being discharged today, because of his severe pain issues. They want that to be under control before they let him go home. They are trying multiple tactics, and will go with what works the best.

I read the comments from Ben-my brother-'s post to Dad, and he seemed cheered by your thoughts and wishes. So, keep commenting, and Ben and/or myself will make sure Dad hears you thoughts. If you want to talk to him, you can call (920) 288-4125 and ask for room #145. That will get you his room.

I'll warn you, though.... Dad is on morphine ;-)!!! Now, for someone like Dad, who has never really done drugs, and who has never been a huge drinker, morphine is kind of a beast for him. When I spoke to him, he was grumpy about how the drugs are making him lose his train of thought, mid-sentence. I reminded him that it was normal, and that he can blame the drugs, not himself or his head, but I don't know if that helped much. He does not like being in this situation, and who can blame him.

Thanks for all your thoughts, prayers, and well-wishes.

Amy