The holidays a wee bit different this year

Two years ago when I'd been first diagnosed I remember wondering if Christmas '15 was my last. Well I'm still here, but without my girl. In December of '15 there was no way anyone thought her cancer was coming back and that she'd run out of time before me. Cancer is just wildly and wickedly unpredictable, sort of like life. This year Brian and Mary Jo are spending Christmas with me. Brian rolled into town early yesterday afternoon. Mary Jo has now spent a month and a half taking care of me. Three months ago she was here for Jeannie.

There's no way you can even begin to repay someone for dedicating that much of their life to you. You can't even begin to start to say thank you. I'm sure they don't want this recognition. They're strictly doing it out of the kindness of their hearts. And while there are definitely others who've been above and beyond the call, there's no doubt in my mind that my sister has been the biggest single reason for my quality of life in my final days. If she knew I was writing this she'd scream. So we'll let her find it after it's posted and too late for her to stop me.

I also have a long list of people who are ready to do whatever is necessary at the drop of a hat. I'm thankful there are so many and grateful that I haven't needed more help. I continue on a pattern of some days are better than others. I've pieced together two good days in a row now. Tomorrow I hope for three, especially since it's Christmas. It's asking a lot but maybe it will be my Christmas present. We've been invited to the home of a life long friend and I'd really like to be able to make it. 

We've gotten a touch of snow tonight. Maybe it'll be enough to give us a white Christmas. We'll see in the morning. But one thing is for sure. Love to all of you. And a Merry Christmas too.

death inhibitions.

Life is always an adventure. So I've been enjoying the exploration of my final days as well as I possibly can. My last adventure so to speak. At least in life as we know it. I've always known that some people handle death better than others. Some are very comfortable discussing it. Others, you can see on their faces that they'd rather have you pull out their fingernails. Today included a visit from a friend with no death inhibitions (for lack of a better term). It was refreshing to talk with him. Over the course of my life we have made some progress in handling the subject. But we still have a long, long way to go. I probably don't help matters since I'm my normal irreverent self in talking about it. My advice to those of you without immediate departure plans, take your lead from the soon to be departed. You'll find a lot of people are terrified. You might have been the strength they needed just by showing up. Go visit. You'll be glad you did.

Now I may be rambling all over the place here but I can legitimately blame the drugs. Good thing I have my sister here for designated driving. No need to leave too soon. Most of my relief comes from morphine and marijuana. Don't let anyone tell you marijuana has no medical application. I and many others have found it to be superior to pharmaceuticals for pain and nausea relief. But the fact that it's a plant precludes the big pharmaceutical conglomerates from further engorging their already disgusting profit margins. They're doing nothing for the betterment of humankind despite trying to convince you otherwise in their far too plentiful television commercials. Now the morphine they produce certainly is a big help to me. It in turn causes constipation, an ongoing battle in which I currently hold the upper hand. We'll see what tomorrow brings. 

Last but not least I'm still eating, just less and less. I know when the pain steps up it's because the liver is enlarging and taking up more than it's fair share of the abdominal cavity. I have an appetite, just not enough space to support an appetite. But it gives me an excuse to go out in search of a place for lunch each day. Who knows if I linger around too long perhaps I'll start doing restaurant reviews.

hospice, not what you think it is

So I've now had numerous opportunities to tell people that I'm in hospice care. What I've found is that most people have an outdated impression of hospice. Sort of that you're hospitalized, hooked to an IV, and gasping for your last breath. But that's not it at all. I'm home and essentially leading a normal life. Oh, things like constipation and pain control take a more prominent role than they do for most folks. But most folks who see me are telling me how incredibly good I look. That if they didn't know how very sick I was they wouldn't think a thing in the world was wrong with me.

Oh, but I know the truth. Saturday I woke up with a pain that seems to have become more permanent in nature. This has resulted in a slight increase in the amount of morphine I take. It kind of reminds me of when Jeannie's liver started to enlarge. Because it has been accompanied by a decrease in how much I can eat. I get that "full" feeling quickly. I do have a good appetite, which is a good thing. My sister is here to make sure I'm eating and eating well. We generally get out for lunch each day. This guarantees that we do get out. One day this week even turned into a 2 thousand dollar stop at Best Buy. 

So why does a dying man spend 2 thousand dollars at Best Buy? Because he decided there's no reason he should spend his final days with a TV that's also trying to leave the world, an iPad that is severely limping, and a desktop that is behaving poorly.  Must say I'm quite pleased with my new Dell 2 in 1 and the 55" Sony. I'm also waiting for a new LL Bean parka to show up. Any of these items are "Christmas ideas" I would have given Jeannie in a more normal year. I might not get nearly as much use out of them as I  would have in a more normal year. But life is anything but normal. I continue to be enjoying it as much as I possibly can. 

Next time I write maybe I'll write about messages I've gotten from Jeannie since she's left. (hint: they've been kind of low-key, just like us) Or maybe I'll say a few words about alternative pain control methods and how well they really do work. Todays agenda includes a B12/testosterone injection. I think we've found a schedule that spaces them out just right. They've definitely been an energy boost.

My turn in hospice

It hasn't even been a month since my last update. Enough to confirm I'm nowhere as reliable at writing as Jeannie was. But changes have been flying. I'm in hospice and they've been fulfilling their mission of keeping me out of pain. They're quite excellent at it in fact. I can't say how well I'll keep this updated so we'll all find out when we get there.

The good news is I have family in town. My sister flew in a week ago when I took a sharp turn to the worse. My buddy Jim was here at my side before that. I was very grateful. At a time like that you know who'll be there for you. They've been conspiring to keep track of me.Honestly it was a wake up call to get  my eggs lined up while there is time. Most of those eggs are in a decent enough line, don't get me wrong. I'm not striving for perfection, concentrating instead on enjoying the time.

As an added plus Mary Jo's offspring Nancy and Michael rolled in. This was of much assistance to the effort called: "Empty This Full House". In future days, details of how deep they dug, and how much they hauled. (hint: it's a job that's not humanely possible)

Rose took a selfie with Mike

 

You never really say goodbye

Clearly I'm not anywhere as good as Jeannie was about keeping the blog updated. Mainly because I guess it was always her baby, her soapbox. She always had a message, a thought, or just an update on our lives. But I am remiss in not saying anything about her memorial, which came off better than I ever could have hoped. It was a completely beautiful October morning, sunny and warm (oh how we could use some sunny and warm right now). There were about a dozen people who rose to speak, including myself. 

It's been three weeks now since the memorial. And maybe it's just as well that time has passed before I've written about it. Because weeks later people who were there are still commenting on what a nice gathering it was. Everyone who spoke knew and loved her. Everyone had their own memories and perspectives. That was the beauty of it. It was everything I had hoped for and then some. In the beginning I commented that most often we leave such things to members of the clergy. Nothing against the profession. They do the best they possibly can in those situations. But they never (in most cases) knew the departed anywhere near as well as the people sitting in the audience. 

Some folks have apologized for not having been able to bring themselves to rise and speak. But there's no apology necessary.  How I managed to maintain my composure is still anyones guess. Maybe I had a little help. In all my remaining days I will always be happy we did this the way we did rather than doing the "traditional" funeral arrangements. 

As for my own situation I pretty much decided months ago that I wouldn't do more chemo. If Jeannie were still here I would just to have more time to be with her. She told me in her first go round with chemo that if she didn't have me she wouldn't go through those treatments. I didn't fully understand until it was my time to take the poison. Cancer patients don't do chemo for themselves. They do it to spend time with their loved ones. I'll be scanned again in a couple weeks.  The blood work is already giving an idea of what the scan will show. I still feel fine for the most part. But after watching Jeannie I know just how quickly things can change.

What ever time is left I am enjoying. Taking care of myself, of Tillie and Rose. Of all the loose ends that need to be tied up before my time runs out. Family and friends have been wonderful and considerate. And I've learned a lot about grief and bereavement. It's very tiring for one. It's best faced head on for another. Hospice offers a lot of a lot of support for survivors in the way of counseling and group events that I had no idea existed. What follows is one of the nuggets I picked up there:

I had my own notion of grief.
I thought it was the sad time.
That followed the death of someone you love.
And you had to push through it to get to the other side.
But I am learning there is no other side. There is no pushing through.
But rather, there is absorption.
Adjustment.
Acceptance.
Grief is not somethiung you complete, but rather you endure.
Grief is not a task to finish and move on,
But an element of yourself, an alteration of your being.
A new way of seeing.
A new definition of self. 

                                                  -Author unkown
 

The Memorial

Okay I'll grant you it's not completely normal to hold a memorial a month after someone's passing. But we were never completely conventional anyway. We just appeared to be.The date selected makes it the day before our anniversary. Everyone is welcome. We can do it inside or out depending on the weather. And this gives everyone an opportunity to plan ahead for an occasion than normally can't be planned at all.

If you have questions of any sort don't hesitate to call, text or email me. You can use my number or Jeannie's. I'm doing as well as can be expected. Hope to see you there.

11am Saturday October 14
Sunset Cemetery
6959 West Broad St
Galloway, OH 43119 
 

The news we never want

We all know our ultimate fate in life. Thankfully, Jeannie's was peaceful and easy. Sunday she had a great day. Her pain was well controlled, she was talking and lucid. Her spirits were great. She talked with visitors. But later that night she began to weaken. As Monday moved along, it became very obvious that she was losing her strength and will to fight.

In our conversations we'd talked about slipping away in our own bed at home. When reality hit it was obvious that moving her back home would actually be a great disservice. Being jostled around wasn't a tolerable thing for her. Her liver had enlarged to the point it was crowding all her other organs. This slowly reduced her appetite to the point she ate nothing at all in her last few days.The hospice folks at Ohio Health were great. They were open to anything that would keep her comfortable. They have a dedicated hospice facility but didn't insist on her moving to it. She could have come home if that's what we had wanted. Or she could stay right where she was, which was the option I'd ending up selecting. They were flexible to the point of being willing to change anything at anytime. They worked diligently to control her pain and maintain her comfort. 

When she was first diagnosed in 2013 I was devastated. I did my level best to keep that under wraps. But she was Stage 3b, with odds of 50-50 at best. Then after much hard work she was No Evidence of Disease, once referred to as remission. After my Stage 4 diagnosis at end of 2015, I was the one looking at the odds. Mine were only 10%. This was much much easier to take mentally. But the tables were turned and she was looking at a life without me. I never ever thought this vibrant, healthy woman would have been struck down so quickly and viciously by a recurrence.  

Barely a month and a half ago we were in New England. Looking at us nobody in the world would have guessed we were stage 4 cancer patients. We looked healthier than most "healthy" people. We knew what was going on and were going to use the time remaining to travel around in our little RV. After she beautifully planned the New England run she went to work on a trip out west. It would have been an incredible 5 week vacation through the Dakotas, Wyoming, Montana, Idaho, Oregon and Washington. We would have spent a few days of that camped on the Oregon coast.  We would be starting week two right now. It was not to be. 

The job she did planning the trip out west was just one example of her ability to make life special. She could read voraciously and come up with all sorts of little life hacks that resulted in a wonderful lifestyle throughout our years together. Our years together were almost so nice as to defy description. We never fought. We might not always agree but we never raised our voices. Shouting, name calling and so forth weren't even a consideration. I consider myself the luckiest man in the world to have spent these years with her and will miss her throughout my own final days. 

We decided a long time ago there'd be no showings, calling hours, or big church services. Maybe just some words in a memorial graveside sort of thing. Plans are coming together for just that in mid October. It will be the day before our anniversary. That may make me sound like a glutton for punishment. But I'm doing it for her knowing that she'd be pleased with how I'm handling it. 

I don't know the future of this little blog. I don't know if there will be regular updates without her here. I know I'll take decent care of myself. Admittedly I won't be as scrupulous about it as I'd have been. But without her around, I really don't see myself going through any more of the hell they call chemo.

Peace and love to you all.

Things not going well

Jeannie couldn't write the post this week. Unfortunately, things are looking very grim for our girl. She's been in the hospital since Tuesday evening. Originally she was sent because her calcium was too high, potassium too low, etc. But the continuing enlargement of her liver is taking its toll. It's now to the point that we're talking hospice. Everything is now for her comfort. We gratefully Thank You all for your thoughts and prayers. She's a gentle soul. The world needs more people like her. Maybe we all need to be a little more like her.

Oh well. Back to the poison

I had an appointment with my new oncologist this week. That's the biggest news of the week. The good news is that we both really liked Dr Yadav. Very warm and compassionate. Not at all rushed. Someone who inspires confidence. Unlike his predecessor, who we so lovingly referred to as the princess. The bad news is that I'm going back to chemotherapy, which we all knew was coming. Every last bit of me will get  CT scanned and MRI'd on Wednesday. That sets the stage for a still to be scheduled pet scan. I also have to have a port surgically installed (reinstalled?) so they can administer the witches brew. I was so happy to have gotten rid of the first one but what can a girl do? And once it's done the chemo begins, which Dr Yadav would like to start immediately if not sooner.

We started the week with a visit to our primary care doc, Dr Lemay. He's familiar with everything we've done medically both conventional and alternative, supporting us completely. It was his honest assessment that the chemo is the only option left. My liver is enlarged to the point that I haven't been able to button my jeans for a couple weeks now thanks to the distended belly. I walk slower than I'd like but the distention throws me off balance.

Wait a minute. Back to more positive news. I might have problems but those poor people in Houston. I've been able to get out with Johnny and the dogs on walks around the neighborhood. We went to the early hours of the Greek Festival on Friday and walked and ate. We've been off our diets a bit but Johnny has taken an attitude of whatever he can get me to eat is good nutrition. And I intend to get back to the Greek Festival this weekend since it runs through Monday. On Saturday a couple of neighbors are having parties. I plan to attend both. I still do more than my share of naps. But I've been able to pitch in a bit more around the house. Johnny's been taking care of all the insurance and appointment scheduling. His own appointment this week shows a slight elevation in liver enzymes and a CEA number higher than it's been in a year and a half. He's got a long way to go before it's anything alarming though so he'll revisit it with his oncologist in a couple of months. He's thrilled to watch his Tribe playing good baseball when it matters.We're going to have a great weekend. And we hope all of you do the same.

Starting to feel better

When last I posted I hadn't been feeling well (to put it mildly). I'm glad to report that over the course of the week I've been doing much better. Okay, not 100%. Honestly far from 100%. But I'm not in the hospital. And I'm not eating pain meds all day long. I still sit and stand somewhat slowly. But I no longer require assistance making such basic moves. I'm not sleeping all day and night. And the last few days I've been able to go around the block walking the dogs.

This coming week might clarify the picture of where we go from here. On Monday I meet with our Primary Care (family) doctor. Wednesday brings an appointment with a prospective new oncologist. And then, the chemo debate returns. My big hope is that I rally enough to still go through with our next trip. But the reality will be determined by my energy level over the course of the next several days. I must say I'm proud to report that I did a bit of cleaning inside the RV this afternoon. That's a big step up from where I was last week at this time. 

Love you all. In closing, another scenery shot from our recent New England trip

Maine coast at Acadia National Park

 

Ouch, stop that.

My health really took a nose dive this week.    Well, the last part of the week anyway. Wednesday I went to bed feeling good and Thursday when I awoke I had some abdominal pain.  As the morning went on the pain was never ending and increasing in intensity.  A scan on Tuesday indicated that I had a blood clot in my liver so the pain was scary.  As it  continued to get worse Johnny to me to the Emergency Department.  Amazingly we were able to get right in.  We did the usual, ID and birth date stuff then it was off for another abdominal scan and ultrasound.

The good news is that after a night in the hospital I do not have a blood clot in my liver.  The bad news, they have theories, but no one knows what caused the pain to come on so quickly. My poor liver is definitely enlarged. The most they could do was offer pain medication. And the pain is better than it was. Of course being in a hospital, I was urged to get started on chemotherapy. That's something I've been avoiding. We've both been avoiding it. Having both been through chemo before, we know just how draining  and debilitating it is. Just the same I've been in the process of shopping for a new oncologist. I'm meeting this coming week with a doctor who will offer some referrals. 

So, it’ll a quiet weekend here for us.  We're exhausted from sitting in my room for endless hours. By the way we were in the newest hospital operating in this area. It's really well designed, lots of open areas and natural light. Large private rooms with huge bathrooms. A staff trained to a fault to be upbeat and encouraging. And ya know what? The food was still terrible.  

On that note, a couple lighthouse pictures from our most recent New England visit.

Road Trip!

Johnny and I have just returned from a little piece of heaven.  We spent 10 days in New England.  We’ve been there 2 other times but it’s so beautiful we keep going back.  We started off at Lake George RV Park and Charlie’s Bark Park.  For those of you traveling with dogs there is no place in the world like the two acre Charlie’s Bark Park.  The dogs had the opportunity to burn off energy so we could hop in the car slowly cruising through town after town ooh-ing and aah-ing at absolutely everything.

shelter house at the worlds greatest dog park

In a little town called Old Forge, New York we stopped at Lucy and Bob’s and had a breakfast so good we’re still talking about it.  It’s a small café that concentrates on just a few items to make sure that everything is mind blowing. It was so good we still talk about it. And to make it even better they are very dog friendly.

Lake Champlain should be designated a great lake, because it is

After our time in New York we headed to Vermont and Lake Champlain to spend the night on the water.  Johnny grilled some beef filets and once again the views are simply breath taking. From here we headed into New Hampshire and stayed in the Woodstock/Lincoln area.  It worked out as a great base camp to see the Appalachian Trail, Franconia Notch, The Old Man of the Mountain, and the White Mountains in General. 

We also found a great little store near our camp site, The Purple Tomato and they get our vote for best lobster roll of the trip!  They were so good that Rose was hoping to get in on the lunch too!

she always gets a taste

We enjoyed our time there, but then it was off to Bar Harbor, Maine truly the highlight of our trip. Once we got settled in at our camp site we chowed down on lobster rolls and took the dogs to the beach for sunset.  A big highlight of the trip was a 1.5 hour harbor voyage on the Acadian (nobody sang the Gilligan song).  We saw miles of beautiful homes, bald eagles, seal, whales, and all sorts of other wildlife.  Rose loved the cruise but I’m not sure that Tillie was quite as enthused.  Our trip into downtown led us to a café called Poorboy’s.  Wonderful food and once again they were very dog friendly.

Getting ready to tour the harbor at Bar Harbor

As usual, vacations fly by.  But we did get this one last shot of the four of us at the top of Cadillac Mountain.  All too soon it was time to pack up and start driving home.  But not without one more stop for lobster rolls before getting on the road.  Overall we’re already dreaming of our next trip to Maine.  Until then, we’ll reminisce and plan some other trips.

at the top of Cadillac mountain

We’re both doing well, but next week the doctor appointments start back up.  Happy Weekend.  We love you all.