From the beginning...

October, 2011

Dad was having a more difficult time breathing then usual and getting real tired.  The primary care doctor, Dr. Pendleton found two masses on Dads lungs.  He referred him to Pulmonary  specialist Dr. Klein.  Dr. Klein did a biopsy. Took out several mucus plugs but could not reach the tumors.  Dr.  Klein had hopes that the masses were abscesses after discovering the mucus plugs.  The first batch of test came back negative for cancer.   

Plan 2 was to do a more invasive biopsy.  They would have to collapse a lung. That could be very dangerous for Dad, So, there was a lot of hesitation.

The next CT scan showed the tumors had grown.

On Halloween, Dad bent over and did something to his back that caused great pain.

After a couple days. Mom took him to her Orthopedic Doctor, Dr. Smith.  The x-ray showed a compressed disk.  About the same time Dr. Klein (Pulminary Dr.)  trys to schedule a PET scan.  That would reveal  if the masses were cancer and if there was more as well as give the needed details about the back  situation.  The wait for approval begins.

In the meantime Dad is getting weaker and is not eating or drinking.  The pain is intense.  

The insurance company says no to the PET scan.

So they begin to talk about an invasive  Lung biopsy that would require collapsing Dads lung to get the biopsy.  This is a very dangerous procedure for Dad because of the emphysema.   In order to do the biopsy Dad would also have to go off his blood thinner and get his blood thickened up.

The Biopsy is scheduled for Tuesday the 6th. Dad is getting weaker, is still not eating or drinking, is still in intense pain.

In intense pain and with tremendous effort from Mom and Judy they get Dad to the scheduled Biopsy. Only to be sent home because his blood is not thin enough yet.  It is rescheduled for Thursday the 8^th.

Aunt Venetta and Uncle Johnny help Mom get Dad to the next scheduled Biopsy. By now he can hardly move. It takes over an hour to get him out to the car.  At the appointment his blood is still not thin enough. But they discover he has an infection in his blood.  They try to send him home again.  This time Aunt Venetta stands up to the doctor’s and insist they do something other then send him home in such pain to return to the whole ordeal once more to get the biopsy.  They do the MRI for his back, then send him home.  With no treatments, no solutions, no antibiotics.  Reschedule the biopsy for Monday the 12^th of December.

Saturday Dec. 10^th.  Dad has stayed in bed hardly moving, intense pain. Not eating. Not drinking.  He has lost a lot of weight.  Mom calls a neighbor who is an ER doctor and asks him to come take a look at dad.  Dr. Stan Benson.  Dr. Benson takes one look at dad and says you are going to he hospital right now.   They get a gurney because dad can not move on his own.  At the ER they immediately surround dad.  He is very dehydrated and anemic. They start rehydration and antibiotics. They put him in the ICU and begin CT scans.  The CT scans reveal tumors on his spine.  By Saturday evening they have rehydrated him enough that they move him to a regular room.   

They have increased his pain meds but he is still in pain.  He says it goes between a 7 and a 9.  He is still very weak and very tired but is unable to sleep and unable to eat. He is drinking sips of water often.  He is shaky, His legs are starting to feel tight and are beginning to swell.  He feels new pain across his abdomen.

Sunday, Dec 11^th -   Dad looks a little better today as he is rehydrating.  His pain is still around a 7.  They do more CT scans and find more Cancer.  They have now found Cancer on his adrenal glands, Liver, Lungs and spine.  The Cancer is the main cause of all his conditions.  The liver is not functioning properly so the blood is infected.  However they have a tumor now that is safer to biopsy.  They decide to biopsy the tumor on the adrenal gland on Monday.

With lack of sleep and eating combined with meds. Dad is seeing things like Christmas lights hanging in the room.  The smoke detector keeps moving in and out of the ceiling and shelves are moving around.   His dog Taffy appears in the TV and every time I move my computer Taffy turns into a cat.  He wonders how I am performing this magic trick for him.   The best one is he keeps looking under the sheets.  I assured him the parts God gave him are still there. He says “who would be playing a trick like this on me?  What is the trick we ask?  He makes mom come over and look at his catheter and says, “Look, Someone put a chicken bone in my catheter!”  

So many Visitors coming with love!  The ones that know he is hospitalized from the ward come before church. It is announced in church so many come after church.  They are waiting in line outside for their turn to come in and let Dad and mom know they love them.

Dr. Benson comes as a visitor as he has no authority outside of the ER.  We are on the greater side of confusion because different doctors are giving us different information and some are telling us nothing.     Dr. Bensen leaves and looks up Dads records. He takes me aside and tells me what is known. 

The doctors are 100% sure it is cancer 

They did find more cancer across the abdomen. His legs are tight and swollen because he has a blood clot that goes down most of his right leg.  A few more in his left leg.

He gently leads me to see if I can grasp the reality of the situation so I ask, Dad is not coming home for a long time or at all, is he ?  He shakes his head and seems relieved that I have grasped the reality of the situation.  He asks me about mom. He is concerned that she is in denial.  He offers to prescribe her something to relax and calm her.

Just in case these hallucinations are more then medications, They order a Head CT.

Then he writes it down as he explains to me what happens next to his knowledge from the records.

• They will give Dad Blood transfusion to thicken his blood. The new blood will quickly repair everything about his blood levels.  At least two units
• Dr. Olsen will biopsy the tumor from the adrenal gland on Monday.  They will probably also give him Vitamin K to help thicken the blood.  They want to do this as fast as possible so they can get the biopsy done and get his blood thin again to help the clotting as soon as possible.
• They have decided not to put the cement in the back because the tumor has wrapped itself around and weakened the spine to the point they are afraid the cement could push against his spinal cord and paralyze him.
• Will do a Head CT to make sure no cancer is in the brain.
• There is no reason to do a PET scan at this point because they know it is a fast growing cancer and they have a safe place to Biopsy.  What we really need to know is the type of cancer. That we will learn from the biopsy.  Also the PET scan is an outpatient only procedure.  They would have to check dad into a rehab then schedule the PET scan as an outpatient and bring him back. Plus the radioactive substance they inject as some bad side effects and has to be flown in from Washington in a protected way.
• We need to start thinking about sending Dad to a Rehab center as part of his treatment because mom alone can’t handle the heavy lifting and help that Dad will need. Unless if we have a “big Ole’ Tongan that can do that”  (I suggested we consult Aunt LaRue about that.) There is an option of home care/ Hospice.

  

If a Rehab is necessary Coral Dessert is chosen because it has a good rep and someone from the ward runs it.  But it is a more aggressive rehab. Dad does not need aggressive therapy.   

Dad is antsy and itchy from the pain meds.  They give him the Vitamin K and the first blood transfusions.

Monday

 Before we leave dad calls    Dr. Pendelton has visited and told him the cancer is terminal.  Says 3 to 6 months.  But Dad can’t remember everything that was said.  Why does a Doctor tell a patient something like that without any family there?

When we arrive, Kris Brown from Pallative care is talking to Dad . Dad has said - No to Chemo, Yes to DNR.  No heroic anything including antibiotics  when it gets to the end point  She talks a bit with us  about Dads wishes.  We asked Dad if he would rather go to a rehab center or go home.  He of course wants to go home from here. Her philosophy is let him go in dignity instead of pain.  Use pain management to keep him comfy as possible.  She tells the staff to not disturb him during the night. Let him try to sleep.  He has only had a cat nap here and there. He Keeps getting woken up every few minutes. So he still has not had any real sleep.

She had them change the pain med to dialanton or Hydromorophone or diloded. (Three names same med.)

They give him two more units of blood to prepare for biopsy

Around 1:30 He is taken in for  the biopsy.  Blood is finally thick enough.

After the biopsy,  He is teasing nursing staff.  The hallucinations have calmed down but not gone away.

Visitors   just keep coming, including the parents of  friends of mine from Monument.  Doyle and Kris Oakey sent Doyle’s parents in to see how we were doing.

And medical staff from other places like his transfusion center.

Dad and I have a Conversation where we make  a deal, Dad say’s he is not afraid of dying.  He knows mom will be along  later but he is concerned about the family. He has a beautiful family and does not want to see contention happen over dividing up his tools and things. I make a deal with him that I will make sure that does not happen if he tells Emily to visit her mom. Dad says he will try to get her a 10 day pass! And promised to give her and Michael both a big hug.  Mom says hug my parents as well and they talk briefly about seeing Dads parents as well.

 He Eats applesauce and Jello!  The first real food in a very long time!

The Oncologist came in and introduced himself to dad while we were not there.  Dr Tay.

Tuesday

Dad is looking better, more alert.  It is hard to make myself realize getting him better  does not mean he is getting better

Mom’s Sciatica is acting up so we take her to doctor Smith.  Dr Smith tells us Dads back could also easily break if he does not have the cement put in. We need to find how stable it is or is not. We agree to get Dr. Majors a back surgeon on board.  To help decide this

The Palliative care person ordered a pain med pump.  It pumps the Dilanton in every hour and Dad can pump a little bit more in each hour.  This will keep him much more comfortable and pain managed.    

It appears there are no hallucinations today and for the first time he says his pain is at about a 2.

This morning a PT try’s to set him in a chair for the first time  but Dad can’t do it.  In the afternoon they try again and he stays in the chair for about an hour with some  mild discomfort and  sleeps peacefully for first time.

After he naps he eats a half banana and an instant breakfast

You can see Dad coming back. He has been giving his nurse Alice a bad time all day. She threatens to give him a big shot in his fanny if he keeps it up.

We leave a little early because he is sleeping so peacefully.

Wednesday.

The oncologist called mom.  He said that depending on what kind of cancer the biopsy shows there is a new pill that can help with it. It could prolong his life.  But we have to wait for the Biopsy results.

When we get to the hospital Dad is in the shower.  He managed it well and was looking good.  He lays down exhausted and here comes PT.  He tells them he is “pooped”  she says she will take it easy on him but makes him sit up and do some exercises then stand up and sit down a couple times.  You can see the pain in his face.  But he is being a good patient and trying hard.  He takes his extra pump of pain meds.  Soon he begins itching all over which agitates him and he begins seeing things again.  The nurse says Dr. Pendleton says no Benadryl for the itching but he ordered  something  different that he can only have once a day and he already had it.  He just has to decide between the pain and the itching!   

After several minutes the itching subsides and Dad relaxes and  starts watching TV.  First time he has turned it on.   

He is still a bit disoriented and fidgety. And trys to stand up.  I stop him by strongly saying SIT!   He immediately stops and puts both hands up like dog paws and pants.  Then he sits on the side of the bed for a bit.

Dr. Pendleton comes in to tell us the biopsy results are back.  All he knows is that it is cancer. The biopsy will go to Salt Lake now and it will take a few more days before we know what kind.  But he says less then six months is what his thoughts are. But of course we still need more information on the type. They can not tell if the primary source is the lungs or the liver.  He will call Dr. Majors for the back consult but hints that he most likely will not want to do surgery. He orders the Benedryl and dad takes it.

The PT came back at 2:00 and Dad was still in pain and worn out. So it did not go real well. When PT finished dad fell right asleep but it was like watching them torture him.  They say it is needed to keep the back from getting stiff and worse. 

 It was frustrating because he had the menu in hand already to order real food for the first time.  That desire went away instantly with the PT work out!