Our last night

I just read what I posted on Monday just 6 hours before he passed on..  It's insane how fast things can change.

Brian was very restless Monday.  It did not get better.  He couldn't get comfortable.  It had gotten to the point where he couldn't sit still, tossing and turning, sitting up then laying down over and over again.  It all happened so fast.  He couldn't clear his throat anymore.  Everything I read said that once they start the "rattle" you have about 24 or so hours..  It was within an hour..
I could see it in his eyes.  He looked like he was starting to freak.  I grabbed his cheeks and had him focus on my face.  I tried to calm him and tell him that he was ok.  He started to vomit again but it was different this time.  It didn't stop.  It came out of his mouth and his nose and it ran like blood.. It seemed like he was suffocating.  I tried to help him but it was no use, it just wouldn't stop.  I was holding him up in my arms.  We were looking into each others eyes... and then he was gone.
It was shocking and devestating.

The truth: Even though you know it's coming, you are never ready.

The lie:  You will go to sleep one day and just never wake up.
Maybe it happens that way for some, but from my experience and research, it's a small percentage..

I am very thankful to my dad.  He was here and took care of my daughter that night when I couldn't and made the phone calls I didn't care to make and I took the time I needed to fall apart.

Even now, a full week later, I still can't believe it's true.  Until I close my eyes at night to sleep and I see his face and his eyes staring back at mine and then....

This past week has been a blur.  I have so many people to thank.. and there are so many that I am indebted too..  I would not have survived this last week, let alone this last year, if it were not for my friends and family.  I love you all!

Not good.

We had about 24 hours, then he started vomiting again. 

We were up till 4:30 this morning. Then back up at 5:30 for awhile. Back to sleep about 6:30-7am. Back up at 9:30. Hospice came about 10am. 

He is ok right now. Vomiting still but not as often. He has been very restless. I have given him atavan a few times today and he has calmed down and is sleeping finally. 

He has been having pain and anxiety today. They are adding a pump tonight with a mix of atavan, decadron, and Benadryl. They do not belive he will come out of this. That being said, we have heard that before...  Only God knows. 

Finally :)

Since trying the new meds we got at 2pm today.. Brian has only thrown up one time and has been sleeping soundly for hours! YAY!!

Praying this works!

6 days of throwing up. Trying something new again. 

I just gave him a phenergan suppository. Praying it works! 

Still sick

Trying a new concoction.. Suppositories haven't been working. A mixture of Atavan Decadron and Benadryl. 

Sick

Brian has been throwing up over the last 4 days.  He hasn't been able to keep any fluids or medications down.  This morning he was given a suppository and he is already more comfortable.  Fingers crossed that it helps!

A lot of sleeping

Brian has been mostly sleeping since he had the ketamine shot.  I have had to wake him up to give him his meds.  He did sit out on the back deck for about 20 mins yesterday and woke up last night and ate a little bit of dinner.  Hopefully he will start to wake up more often on his own..

Rough Night

I was up with Brian most of the night. his pain was bad. We pushed his bolus button several times but it wasn't helping so I called hospice about 3:30 am to let them know I was giving him a ketamine shot. It did help after awhile but he hates the way it makes him feel so I ended up staying up with him till 6am holding his hand. He is feeling better this morning but still having some pain.

Sweet Bri

I'm telling Brian bye because I'm leaving for a couple of hours while the nurse sits with him, and he says to me, "I love you so much and I'm already waiting for you to get home."

He doesn't make it easy for me to leave… LOL

Brian on the buggy

Brian on the buggy

Brian has been restless again so I got him on the buggy and he had a blast!  He doesn't open his eyes much and so he tends to go all over the place.  Every time he would run into the grass he said I pushed him, lol.  When he was tired and wanted to go back home he said "Man, I have to get you home, you are panting and wore out"   I thought that was cute!  lol.

He is still sleeping most of the time and you can barely hear him when he talks but he seems to get restless and needs to do something low key about once every week or two.  I have been told that that is normal.  

Last night I was upset and he asked me what is wrong.  I told him that it was just that I am worried about him and he replied "don't worry about me, I'm too stupid to die"  I'm not sure what he meant by that but it made me laugh.. 

Random pics over the last year

Warning:  This may be hard to see.

The night before we found out

 

One of the last fun things Brian got to do out.  We went 2 tracking
with Caressa & Josh and one of their friends. 

Notice the shoes.  He had significant confusion off and on at this point.

Fishing with Dan Needham. 

 

Crab Rangoon

Bri just woke up and told me he wants 4 chinese hockey sockey rolls. 

After a series of questions we figured out he wants crab rangoon. HAHA

-I know I haven't posted about him in awhile. He has been very stable. No changes in the last three weeks or so.  

He sleeps a lot. He is awake about 3 hours a day. He usually eats a small amount once a day. 

I will post an update if there are any changes.

Thank you everyone for your continued prayers for strength and peace ❤️❤️

Meds

Brian has been in bed since last Tuesday 6/14 night. Wenesday 6/15 morning he threw up quite a lot, was having some kind of convulsions or shakes, and couldn't talk for most of the day. He was very weak. Hospice checked him out. The doctor said he expected this.  Since then, Brian has only been waking up every 6 hours (when I wake him) for his medicine. He is still quite weak. I got him up for a bath today and he was able to walk, with help, to the tub. He fell asleep as soon as he was in the water. I got him back out after I cleaned him, the room, and changed the sheets. He said it was too much work and didnt want to do it again. I think he fell asleep before his head hit the pillow. 

Brian has been quite irritated everytime I wake him for his medicine.  This morning I put a dissolvable zofran under his tongue and he grabbed it out of his mouth and threw it on the floor. I asked him why he did that and he replied "It wasn't  working"

Once yesterday Brian refused to take his medicing at all. I told him "you can take it orally, or Ill give it to you anally"

He was very willing after that. LOL

Hangin' in there

Things are pretty much the same.  He sleeps most of the time but it seems like every two or three days he "wakes up" and wants to go do "something".  Hospice says this is normal.  He is still loosing weight.  Hospice is still coming every 2-3 days.  He has been complaining about it being hard to breath over the last few days.

He is very stubborn and we have to watch him because we never know what the "something" he will want to do, is.  One time, he wanted to go drive his truck.. sometimes he wants to get out some power tools, or try to mow.  You can see why this would be an issue if you can imagine Brian as an 80 year old man on a lot of narcotic pain meds who can't work his phone or the remote most of the time.  Which also explains why he gets so angry and frustrated because he has always been so capable and driven.  It's hard not to feel sorry for him, which also makes him mad.

Sunday (the 12th) around 4pm he woke up and wanted to go through his things and tell me who gets what.  Yesterday he wanted to start telling me what to write in letters he wants to leave for some people.  He only got through one and a half before he fell asleep.  We finished another one today but he was confused so we will have to revisit that one.  Ill keep helping push him to finish them because I know its important to him.

Today his hospice nurse asked him if she can come back Thursday and he told her "only if you bring me a new truck and an airplane"  He says some pretty funny stuff..  Im thinking I may try to post more often and share some of the off the wall stuff he does.  It keeps things interesting for sure!

Here are some examples that happened about a month or so ago:

He has these plush pillows you can microwave.  He went into the kitchen and put them in the freezer, closed the door, then started pushing buttons.  I asked him what he is doing, he said "warming up my pillows" I opened the door and told him that won't work.  He said, "What, the freezer won't heat my stuff up anymore?  Thats just great!"  Then he stomped out of the kitchen.

Brian went into the kitchen and got 2 hot dogs out and put them on a plate.  He put the plate with the hot dogs into the fridge and closed the door.  He then walked over to the microwave, opened the door, then looked at me and asked "Where's my hotdogs?"

A couple weeks ago Brian was very persistent about getting his suit tailored.  While the lady was pinning his pants she asked "So what's the special occasion?"  Brian replied "My Funeral"
He got a real kick out of that one.. I started laughing and crying at the same time because it hurt but it was SO BRIAN!

Genetics Results

U Of M Cancer Genetics Clinic Med Inn Building 1500 E Medical Center Dr Spc 5830 Floor 3 Reception B Ann Arbor MI 48109-5830 Telephone: 734-763-2532 Fax: 734-763-7672

Cancer Genetics Results Note: I had the opportunity to speak with the wife of our mutual patient Brian Brookman, by phone on 6/6/2016 to review his genetic test results. Mr. Brookman was originally seen for genetic counseling in the Multidisciplinary Pancreas Clinic due to his personal history of pancreatic cancer diagnosed at age 45, which raised concern for hereditary risk. Genetic testing was ordered, the PancNext panel test through Ambry GeneticLaboratories which includes analysis of the following genes: APC, ATM, BRCA1, BRCA2, CDKN2A, EPCAM, MLH1, MSH2, MSH6, PALB2, PMS2, STK11, and TP53. This testing revealed a pathogenic mutation in the ATM gene (c.3802delG). The remaining genes of this panel were negative with no mutations detected. A copy of his test results accompanies this letter. ATM gene mutations are inherited in a dominant manner, meaning that all first degree relatives (parents, children and siblings) of a person with an ATM mutation are at 50% risk of inheriting the family mutation. Other relatives are at a risk dependent on their degree of relation.  Now that the family mutation has been identified, predictive genetic testing can be offered to Mr. Brookman’s at risk family members.  If we can be of help in identifying local genetic services for Mr. Brookman's family members, they are encouraged to contact our office.  Mr. Brookman's wife shared that Mr. Brookman has been set up with hospice services given the advanced state of his disease. She and their daughter are interested in a follow up visit to this clinic to further discuss the implications of this finding later this fall. They will be contacted to set up an appointment.  I, Jenae Osborne, provided the genetic counseling and communicated the medical recommendations. Ordering physician Dr. Diane Simeone was available for consult. Please contact our office should you have any questions.  Thank you again for your referral. Sincerely, Jenae Osborne, MS, CGC Certified Genetic Counselor

Update

The brain scan was clear. The confusion is because of a combination of the cancer in his liver and the pain meds. 

The severity of it comes and goes. Sometimes, if you don't think about why its happening, some of the things he says are funny. Other times I feel bad because he knows hes confused and he gets very frustrated. 

The last couple of weeks have been about keeping him comfortable. 

Hospice says to be ready because it could be any time. Some  times I just dont see how thats possible.. Other times Im scared it could happen at any moment. 

One thing I know, without a doubt.. He is the strongest, kindest person I know. Even now he worries about everyone but himself. ❤️

It took what felt like a long time to get his pain under control. Hospice said they thought it was pretty fast. 

They come every 3-4 days now to check on him and his pain pump. He sleeps most of the time and gets restless off and on. Most days he eats a small amount once or twice a day. Yesterday he didnt eat anything. 

We are in the car at the lake right now. I cant remember the last time he left the house.. He's exhausted and sleeping now but he is happy to be out of the house. 

Side note: We are not having many visitors. He gets very anxious and tired so when we do its one at a time for about 30 mins no more than once a day. Thank you all for understanding. 

End Stage

I know I haven't posted in awhile.  

Brian has taken a turn for the worse.  Within the last 5 days he has gone from showing signs of some confusion, to being confused most of the time.  

He sleeps most of the time and sometimes stops breathing for several seconds.

His stomach is swollen and tight.

He can not be alone at this point.  

The only thing that can be done is to keep him comfortable.  

Brain scan

Saw the oncologist in muskegon today. He thinks brians confusion is because of his medicine but is ordering a scan of his brain to be sure. He is also changing his pain meds bc bri wont stay out of the bath, which causes it to release too much medication.. 

They are also setting us up with hospice to help with brians medication needs and if i have to work they will send a nurse to be with brian if we need that.

No More Chemo

There will be no more chemo.
Brian will be following The Budwig Diet.

Tough choices to make..

We got a call from Dr Sahai

The U of M specialists went over the ct scan and found that the mass on Brians pancreas is larger and "choking" his main artery. 

He also has some blood clots, one is in his main artery. Im not sure where the other two are. 

Dr Sahai wants Bri back on chemo right away. 

Brian and I have not made a concrete decision on what we will do for treatment at this point.
He has been quite sick and throwing up every day.

Missed call

Ca 19-9 levels went up

3/21/16. 5,372

4/18/16. 24,729

We missed a call from Dr sahai. He wants to talk to us on monday.

April 18, 2016 Checkup

Good news! Everything is stable since the last scan. 

Doc said "keep doing what you are doing and I'll see you in 10 weeks"

We are still trying to figure out the constipation issues.  
Brian was given Movantik.  (24 hours later: No change other than 20 hours of extra pain)

Brian did get blood work done for genetic testing today but we will not get the results for 4-6 weeks.  

New Findings

• We spent about 6 hours in the ER today. All his blood work came back fine. There is still moderate stool in his colon. He was given 3 mg of dilauded and it did not help. So they gave him 25 mg of ketamine. It helped. Weird though, he was dreaming while he is awake..

  They sent us home with an rx for dilaudid pills and we are to follow up with his primary and oncologist. They do not know what is wrong. (other than the obvious)

  
  

  We were also given the CT summery. It has spread to his lungs. There is a 3 mm nodule in his lung. The nodule in his liver is 1 cm. I am not sure about the pancreatic tumor. We will have more detailed, concrete information next week.

  
  

  I went online to our patient portal and read last February's report and it looks like that is when they knew about the lungs but did not tell us. I don't understand that.... You can bet I'll be asking why I wasn't told though.

  
  

  
  

Postponed

The Ann arbor trip has been postponed to the 18th. Mercy has not yet sent the CT scan over to Ann arbor so it would be pointless for us to go until they have that and can give us the results along with the blood test results...  So we are going into the ER today.  We are going to go to the ER at Mercy, where we usually go anyway, and hopefully someone can look at the CT scan and let us know what the hell is going on. 

FYI: we have to get the CT scans done locally from now on because Brian's insurance comoany does not cover radiology at U of M anymore.

Pain

Brian has been in nonstop pain for the last month. He gets a new CT scan on Friday and we see the oncologist on the 11th. We are anxious to find out what's going on..

Checkup with Campbell

Ca 19-9 is 5372

An xray was done on his abdomen to check for an obstruction. Thankfully there is not one so we just need to get his constipation under control then we will be getting new blood work in 3 weeks. 

We are not upset about the new number because over the last couple of weeks bri has not done as much of the treatments as he should have bc he was not feeling up to it.

Stent change

Brought Bri to the er yesterday and they kept him overnight. He is now (3/1/16 1:00pm) prepped and ready to have his stent replaced. 

HAHA. Bri just said to me..

Ugh, I've been bored for two days!  Ive almost been here 24 hours!

Update 4:42pm

Everything went great. The stent was not replaced but was plugged and so it was cleaned out. He can go home after he is more awake and alert. He will need a couple of days to rest and recover. 

Interesting & Exciting News

Yesterday Brian had a new blood draw, which they always do before you start chemo treatments, and his CA 19-9 number is down from 8700 to 4100 BEFORE any chemo treatments!  We are so excited for this news!  The oncologist gave us the go ahead to keep up with the alternative treatments we are doing at home so long as the numbers are going down.
For those of you who want to know, Brian is doing high dose intravenous vitamin c treatments and edible marijuana (decarboxylation is very important).  Also, it is strongly suggested that Indica strains are used.  These treatments were started Feb 3rd, right after his last CT scan and blood draw.

CA 19-9 Screenshot

New scans and canceled ablation

Brian got a new CT scan today and we saw the oncologist.  His CA 19-9 levels have gone up  to 8700.  The tumor on his pancreas has grown by .5 cm.  The liver lesion has not changed.  The oncologist has decided that the ablation would not benefit Brian so he has canceled it and Brian is to start back on chemo within the next week or two.

Ablation appointment

Brian has been scheduled for Feb 5th at 6 am for Radio Frequency Ablation.  They will keep him overnight.