It doesn't quite end until...

 ...the Fat Lady Sings.

No pictures. 

But we had the not-funeral funeral-celebration of Life.

It was comforting and really quite nice. One of Rich's hunting buddies from 25 years ago came up to me and held my hand as he re-introduced himself. 

I recalled him and the hunting dog he sold Rich that ended up being my dog. Tom. Tom was the name of the hound. 

Gary held my hand and we relived our hunting days and how much we enjoyed being out at night and listening to the hounds sing their treeing songs. If you ever saw the movie Where the Red Fern Grows, that was us. Hunting and loving our hounds.

The photos that went across the big screen kept a lot of folks entranced. I took so many photos of Rich over the years, what can I say, he was a great model.

Surprising that friends from Missouri came with their kids. I nearly lost it then. A girlfriend that I'd befriended in 6th grade came too. That blew my mind too. I felt the love and friendship with Rich's pals and my friends that came. It was comforting and just what I needed. 

I knew he meant something to a lot of people even if he never thought he did.

Steve, our good pal was there too. He and Dennis [my grandson via my stepdaughter] went off to talk fishing. Steve invited Dennis to go fishing with him next weekend on a special float on the Mississippi. I'm tickled as Rich always wanted to mentor Dennis in the ways of fishing and hunting. Now Steve, who is still reeling from Rich's death has found a way to pass on his knowledge to yet another generation.

How lucky can a grandma get? Dennis will come next Friday evening and then spend time with Steve learning and fishing.

After the cemetery, Ariel and Dennis came to the farm to spend time with me. They didn't travel with their parents so thought they'd come and just hang out  with me. They helped me move some old stuff out of the house and then asked if they could take me to supper. Their treat!

How on earth did I get this lucky to have grandkids that are so thoughtful?

My life going forward, will be held up to events like these and I'll realize that yes, Rich and I had something special and we passed it on to our grands [I hope].

I'll take it, one day at a time and keep recalling all of the joy my husband has given me.

One last note on family. Rich has a daughter and a very self centered sister. One of the relatives who happens to like me very much as I used to take her out to lunch once a month came up and whispered in my ear as she hugged me.

"Watch your back. If they don't get what they want they said there will be War."

Her eyes slid over to my stepdaughter and her husband as she stepped back. 

And dearly beloved, I have no idea what that is supposed to even mean.

The story of Rich's time may have passed but it seems another story will unfold.

Hopefully, those that said that were blowing off steam or have no idea how the laws work for married couples. [Especially married couples who went to attorneys to make sure everything was in place in our estate.] One of the very reasons these days in a blended family to make future plans and write up a rock solid Estate Plan.

War, indeed. Bring it on. Apparently the step thinks I'm sitting on her husband's retirement goldmine and it should be theirs. 

And then

 I woke up early Saturday morning to some coughing. Rich was sitting up and couldn't seem to catch his breath.

I took his 02 reading and nearly fell backwards with shock. How could he still be alive with a reading of 66? I turned up the oxygen concentrator to 3.5L and grabbed the liquid morphine I was directed by the nurses to use in case of what they call Panic Breathing. It is a term which identifies a cycle of rapid shallow breathing.

I administered the morphine under the tongue and gave him his rescue inhaler and set up his nebulizer on the hospital bed table that we had. I was able to bring him up to the mid 80's. 

I called the Hospice hotline and got the NP we'd seen last week. I gave her the low down and she said I'd done exactly what they'd wanted me to do. They also arranged for Tim [Hospice on call nurse] to come and do an evaluation.

Rich tried to eat breakfast. He was able to eat some cereal but gave up as it was too hard for him to eat and breath. He insisted on getting up then and having a cup of coffee in the kitchen. That didn't work out so well and I got him back into his bed after some bathroom mishaps.

He was so apologetic and I just shrugged. Things happen and by now it was just a thing, and nothing to get upset about. 

I'd called Rich's daughter and told her the situation. She responded that they were thinking of coming to visit on Monday. I responded with a curt reply. "Sooner is better." 

I got the "well we have to..."

I said, "Sooner the better. I have to go help your dad now."

I got texts from both grandkids that they were on their way in their own cars. His daughter called back and said she and her hubby would come.

Rich's buddy Steve also was on the way. 

Dennis showed up first and came in to see Grandpa. The poor kid was totally shocked. 

How do I even write this so it makes sense. Rich's daughter and hubby obviously thought that Hospice did not mean really mean....Hospice.

They figured Rich was just going to keep on going on like normal. Probably because Steve and I had been going to extraordinary efforts to take Rich fishing or out once a week as it was his fondest wish.

In Hospice, they encourage you to do the things that you really wish to do. We all pitch in to make Rich's 4 or 5 hours out on Wednesdays enjoyable for him. We do it to see the smiles and hear the laughter. Because we know that time is limited

and do what you wish with the time that is left.

When Tim arrived I sent Dennis outside and while Tim was checking in with the Hospice Doctor I went out to give orders. Rich's daughter and hubby showed up along with Ariel and Steve. I put Steve in charge and told him to keep everyone outside while the nurse and I did the assessment and the catheter.

Steve picked up Charlie and directed traffic and kept the family at bay while I worked with Tim.

The discussion with the doctor revealed that this was either an exacerbation of COPD or it was a progression. Progression = Functional decline. Rich had been in a slow decline but the recent 24 hrs felt like a drop off a cliff.

24 hrs would give us a better idea of what to expect.

After Tim left, I addressed the family in the yard with my rules. "You can visit Rich for 5 minutes or less if he is awake. One person at a time, no more." I'm sure I sounded bossy and stern. And I meant to be.

I had to get to the pharmacy and pick up a med 'stat'. So I left them standing with their mouths agape with Steve and Charlie in charge.

Much later I went to move our little pony to graze in another spot. Ariel walked with me. She commented, "Mom and Dad are so shocked and like, freaked out. They can't believe that Grandpa is this bad off." She huffed and rolled her eyes. 

"I told them that they could have visited him more often and then they would, you know, figure it out. Duh, no surprise for me. I've visited and talked with you. I'm sad to see Grandpa like this, but so glad I came out twice this summer to be with him."

I shrugged. She was right. "Well, they are here now," I sighed. 

His daughter and hubby got a room at the local motel to stay over night. Again I was surprised. They almost never stuck around overnight. Rich's daughter came up to me as they were leaving and said, "Gosh, how are you doing? I'm so worried about you!"

I had a couple of responses I was going to say, but kept my mouth shut. I had things to get done, like empty the catheter, set up a nebulizer, meds, and try to get my guy to eat something.

I have to give it to Dennis. He helped me sit his Grandpa up in bed and patiently sat with him holding him steady while he tried to eat a cookie. Dennis helped me set up the meds and do helped with the nebulizer, then assisted putting his Grandpa back to bed. 

Rich was confused and we had to go slowly. He asked, "Somebody was here and they did something to me? What did they do? Why? I have to pee."  

I explained the catheter again.

"Who was here? I can't...just let me sleep."

I helped him calm down and he fell asleep.

Dennis sat next to me in the kitchen his eyes welled up with tears. "I'm so...I just...I didn't...I don't..." 

I pulled Dennis into my arms and told him it was okay to cry. Real men do have emotions, real men do cry.

So now we wait and see if we are falling off a cliff or having a small progression.

Tonight feels like a Cliff Hanger.

One Month Follow Up!

Today we have the one month follow up with the Radiologist Oncologist, Dr. Witek.

We skipped the two week follow up as Rich was doing well.
Swallowing is still painful to him and he still takes a pain med in the morning to help with that.

I think we can say goodbye to that soon enough.
Eating bread is still difficult as the saliva glands are not producing like they once did.
We don't know if that will all come back or not.

Last night we ate steak, sliced and fried potatoes, and salads.  A very normal meal.  This was something I never thought would happen again [in the third week of treatment].  I think Rich is healing well and actually getting back into the swing of things much faster than anyone imagined.

He has always been determined that 'this' was something he would conquer and I think that attitude helped him greatly.

What happens next?  I guess we wait for the PET scan to see if 'all' of the cancer was eradicated and move on from there.

16 days after

Today we are 16 days out of treatment.

Rich is doing better, he still tries to do 'too much' and push the limit, but that is in his nature right now.
He feels that he has fallen behind and lost time to the treatment.

He saw Dr. D, the dentist today and had his teeth and mouth cleaned.  Dr. D said things looked very good in 'there'.
And Dr. D will be making some temporary teeth to fill in the ones that were taken before radiation/chemo treatments. The permanent ones will take longer to make than 30 days.

Rich is pretty excited to 'get' some teeth back!
Watch out world, he will be chasing after steak again!

His throat is still very painful but compared to some cases, I guess he is doing quite well and healing quite fast.
It seems like a miracle ... we don't have an appointment now for nearly a week and a half!

I feel like I could drive to the VA hospital with my eyes closed.  
Total mileage for driving back and forth for treatments and for other appointments since April 28th?

6, 250 miles.
Whew.

I return to work at midnight tonight.
So things are returning to normal, something I wasn't sure would happen at the end of April.

So far, so good.

The not happy side of Care Giving.

I had an interesting talk with my stepdaugher...oh hell, let's just say she is my daughter.  For all the help and support I've gotten over the years she is as close to a biological child as I could get.

Sometimes I wonder how I'd get through things without her.  I know I can call her and blow steam off.

Last night we discussed how dramatically different Rich will be with her or the nurses and staff at the UW and at the VA.

He charms their pants off.  Smiles, agrees to what they tell him, jokes around and stops to talk at length with other veterans.  All in all what I see in public is a well rounded happy person who is dealing with cancer of the throat.

Suddenly the tables turn when we walk in the door.  He becomes angry, frustrated, and will lash out if I ask him if he is going to 'flush' his PEG tube.  He seems to get confused and can't recall what the doctors told him and WHY they told him these things.

I pull out the handy voice recorder and offer to play it back for him and he gets angry again.  
He tells me I'm a nag. He makes a 'face' at me and gives me the look.
Finally he just tells me to ...
just leave him alone.

I try to let things just roll off my back and try to remind myself that these are just words and that he is the one with the illness.

And then there it is, the little nag in the back of my brain that is mean.  I want to lash out and tell him off.  Let him have some of his own medicine.

Make your own bed, make your own meals, take care of chores, bills, if you know so dang much do it yourself.  If I can't do anything the right way then fine,...I quit.

But no, I don't do that.  

Somewhere there is an end and treatment will be done and there will be a road to recovery.
I always believe in hope even when it is difficult.

I hope.

Half way through Chemo!

13 Radiation Treatments in, 20 left to go.
3 Chemo Infusions done, 3 left.

We are entering the 4th week of treatments.  Rich was told by Dr. W of the UW that he would have a very difficult time swallowing by this time.

Indeed Rich does have a horrid time taking his medications.  His mouth feels awfully dry all of the time and foods have begun to lose their normal taste.

This mostly from the throat radiation.
Yet Rich insists on continuing to eat small portions of food. Mini meals.  He can't drink anything carbonated at this time as it burns his gums and throat to the point of tears.

Milkshakes and smoothies however go down nicely.  The cool drink and the 'smoothness' of it slides right on down.  We have fortified the drinks with protein powder and I am looking for some protein drinks to have along for anytime 'snacks'.

He ate a vegetable soup with hamburger in it the other night ... two small bowls and was delighted to eat it. Other meals include scrambled eggs with small chopped up bacon sprinkled with cheese.
He can still eat lightly toasted English muffins with a huge slather of homemade jelly on it.  
My efforts at homemade jelly are really being appreciated at the moment.

How is his energy level?  Awful.  Dr. W. told him to rest and sleep ALL weekend because he'd be back at it come Monday.

He is exhausted, which we were told is normal for someone to have both radiation and chemotherapy at the same time.  The effects of radiation will last up to ... or beyond 4 weeks after treatment stops.

Rich wasn't pleased with that information, but since his tumor on his lymph node can't be felt any more...and the one on his tonsil is 'pea' sized.  
This godawful treatment is working. 

His daughter and I keep concocting meals that are high in protein and carbs along with drinks that replenish what chemo takes out of him.

We are learning as we go and it isn't easy.  
But we sure have the determination.
Which could only be possible with support from friends and family.