MOVING

I know it’s been a long time since I’ve written to this blog. People are wondering whatever happened to me. Well, I’m still here but not exactly where I wanted to be. I have kept the hospice nurses busy with almost daily visits. Some days more than one visit. This disease is doing its best to make sure that I am uncomfortable at best and in misery at worst. A constant configuring and re-configuring of drugs has brought only fragments of relief. The drugs have left me confused and disoriented.

It was my hope to be able to come back to my little shack in the woods to live out my remaining days in comfort with my dog and my cat at my side. Unfortunately, that will not be the case. It has become quite obvious that I need to be where I have access to around-the-clock medical care.  It is with that in mind that I have decided to move to Munson Hospice House in Traverse City.

This has been a difficult decision to make, but now that I have made it I know it’s the right one. It’s a beautiful facility that looks like a large home, nothing says “hospital” about it. There are 8 large rooms with balconies that overlook a woods. There are provisions for overnight guests and a large common area. Meals can be taken in the dining room or room service is provided. Best of all, medical help is on-site 24/7. It sounds like a real nice place where I could be comfortable.

Comfort is what I need and I get a lot from my friends and family. It’s good to know that you are out there, thinking of me. I will continue to write as long as possible. As always, your support is very welcome. We all have a limited number of days on the planet. Let’s do our best to make them good days by being good to each other.

NOT DEAD YET

No big news to report. The things I have put in motion are going according to plan. Today the DirecTV guy will be here to install my new HD receiver in my bedroom. My son and his friend are still here for one more day. My sister will be here this afternoon and will stay until Sunday. On Monday I have an appointment with an attorney in Traverse City. I want to make the transfer of my property as seamless as possible.

Yesterday my son and I visited a local funeral home where I purchased a cremation plan. They will pick up my body and have it cremated and return my ashes to my son. I would like at least some of my ashes to be spread in my beloved woods where I have lived the past 15 years and where I belong. No services will be conducted. In their place, I have suggested everyone have a party. Get drunk and hoist a tankard to me. Tell lots of funny stories and have a good time. That will be much cheaper than a funeral and a whole lot more fun. Do not mourn a death - celebrate a life. We live on in the hearts and minds of friends and family.

Sadie and I are back to our two daily walks. I’m walking slower, but still walking. I plan to walk until it’s no longer possible. My mailbox and paper box are a quarter-mile from my house. Out in the morning for the paper and back in the afternoon for the mail makes a mile a day.

I often find myself in the position of consoling people about my situation. Others are more upset than I am and I have to let them know that it’s OK. My part in this little drama is actually quite easy. The people left behind have to deal with the aftermath. I guess it’s good that my passing will affect so many people. My wish for them is to accept it and to use whatever they can to make their own lives a little better. My advise is to live every day until there are no more days left. That’s what I will be doing.

Thanks to all for your concern and support. We are all a part of the same thing. If you call that thing “God” that’s one way of looking at it.

A FORK IN THE ROAD

After spending several days bouncing from pain to nausea and back, I finally have achieved some balance.  Emerging from the fog of morphine-induced madness, I have reflected on the road before me. After much consideration, I have decided not to take chemotherapy or radiation. I discovered that I dreaded these therapies more than death. It has been very liberating to lift this weight from my mind. I know it is the right decision for me. The thought of making the two hour round trip to Traverse City five days a week for 3 to 6 weeks while feeling sick was just too much to bear. I want to spend my final days here in the woods where I belong with family and friends and my furry companions. I will be contacting hospice today.

To understand this decision, you must have the facts of the situation. This is a terminal disease I have. There is no cure. They don’t even know what causes it. At best, chemo and radiation would buy me some time. At worst, that time would be spent in agony. It’s a crapshoot. Hospice can come to my home and administer pain medication and keep me comfortable. It’s a wonderful program. Two of my closest friends have worked for hospice for years. They are a very valuable asset and I’m fortunate to know them. They assure me I’ll be well taken care of.

As I have stated before, I am not afraid of dying. At some point, I’m sure I will welcome it. Every journey involves some risk and some danger. It’s the curiosity about what may be around the next curve or over the next hill that keeps us on the road. We all know where that road leads but the adventures along the way are the best part of the journey. So - fasten your seat belts. it may be a bumpy ride!

A BUMP IN THE ROAD

I apologize for the delay but I’ve been sick. Pain has been a problem and my doctor changed my pain meds. Unfortunately, the meds make me sick. So right now I’m trying to find that delicate balance between pain and nausea. I have not found it yet but I’m working on it.

I saw the doctor on Wednesday, which is when he changed the meds. He told me I had the common type of pancreatic cancer that 95% of people have when they have pancreatic cancer. He wants another scan - this one a PET scan where they inject you with radioactive sugar and look for tumors. I have some “questionable” spots on my liver and some lymph nodes and he wants to see if that is cancer. This scan will be on Tuesday. On Wednesday I’ll be fitted with my port for chemotherapy and on Thursday I’ll meet with the radiation guy. As for chemo, I’ll be wearing a pump and getting chemo 24/7. No schedule as yet, pending on the test results.

However, my first priority is to get this pain/med thing under control. I have until Tuesday to make this work. If I still don’t feel much better, the scans and other things will have to wait until I do feel better. There is no way I’m going back and forth to those appointments feeling like this!

Thank you all for your concern and your support. It gives me one more reason to go on. My friends have been terrific and are there for me when needed. My son is coming up next week for a few days, then my sister will be here.

Some Comments

Just a note. Some comments may be missing on some of my posts. I screwed a few of them up and had to re-post them and the comments disappeared. I did not purposely delete them. As always, your comments are appreciated and encouraged. Thank you all for your continued support. kentwood

LINING UP DUCKS

We all know we are going to die but it remains a distant possibility until cancer puts it into focus. I don’t know how long I’ll survive and I don’t want to know. Be it days, weeks, months or years, I’ll make the best of the time I have left. But the situation begs some questions. How do I want to leave things for those I leave behind? How can I make it as easy as possible for them to tend to the details that must be done? These are questions we don’t want to leave to the last minute.

I have a somewhat unique situation in that I don’t have a “significant other” and my family lives 200 miles away. I need to think about how I can leave them a roadmap for the decisions that will need to be made. Here are a few things I have been thinking about and doing:

My will: I reviewed my will to make sure it still reflects my wishes. It does so I don’t need to make any changes there. If you don’t have a will, make one. You can do it online for free.

Finances: I have added my son’s name to all my accounts and have given him power of attorney. I will also add his name to the deed to my property. I will leave instructions as to how to contact Medicare and Social Security as well as how to notify my life insurance. All these will be in a folder left in a prominent place.

Medical: I have completed a booklet called “Five Wishes” produced by Aging with Dignity and available through most community health, hospitals and Hospice. It covers how you want decisions to be made for you if you are no longer able to make them. For instance, the kinds of medical treatments you want or don’t want and how to deal with life support decisions. It’s important for others to know your opinions about these issues.

Organ Donor: I have registered with the State of Michigan Organ Donation databank. If anyone can benefit from any healthy organ, I want them to have it. This is recycling at its finest.

Funeral: I do not want a funeral. I will be contacting a local funeral home to purchase a cremation plan that does not include any service. If people want to remember me they should have a party to celebrate my life. It will cost much less than a funeral and be a lot more fun.

I’m sure there are even more things to consider but that’s all I can come up with right now. If this list reminds you of something you have been meaning to do, then DO IT! Don’t leave these important decisions to your loved ones without some sort of direction from you. It’s very difficult to make these decisions when people are grieving. Take this advice from me and plan ahead.

I will be able to rest easy when I know my ducks are all in a row.

odds and ends

ODDS AND ENDS

First, I must thank friends and family for their support. You have no idea how much that means to me to have people thinking of me and wishing me well. It makes a positive experience out of a potentially negative one. You have all helped more than you’ll ever know. If this party ends tomorrow I’ll have no regrets and so many good vibrations from near and far. Thank You All.

Yesterday Gay picked me up at 6:30am and drove me to Traverse City, about a 45 minute drive. I had a date with the radiology department at 7:30 for a “CT-guided needle biopsy”. It did not sound like much fun and it wasn’t. They used a CT scanner to determine a route to my pancreas then punched a hole in my chest and inserted a long needle into the tumor and extracted several samples. I’d like to say it was painless but that would be a lie. It hurt a lot.

I then had to spend two hours under observation in a recovery room. It had a nice flatscreen TV on the wall and a very nice young man who attended to my every need. After one hour I could order breakfast from a menu that was the equal to most restaurants. I had a western omelet which was wonderful and a cup of coffee. After two hours they let me go and Gay drove me home. Words cannot express my appreciation for her support and friendship. Thank you, Gay.

The results from the MRI and the biopsy will be forwarded to my oncologist, Dr. Schwart. I have an appointment with him on Wednesday, August 29. I expect to have a complete picture of my condition and a general idea of treatment on that date.

My granddaughter Rachel is getting married on September 1. I plan to be in the first row, wearing my pink sport coat. My best wishes for her and her man Kurtis. My advice to them is to live one day at a time, knowing that life is short and every day is precious.

  Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. Buddha

scanned....

I’LL BE SCANNED....

I have led a charmed life. Until cataract surgery last year, my only other surgery was a tonsillectomy at age 7. No serious diseases, no broken bones, nothing.  I used to work in a senior center and had nothing to talk about when people started comparing diseases and operations. Apparently I have been saving it all up for one big production.

I cannot claim to possess any dignity. Anyone who has seen my Facebook page will realize that. It’s good thing because the first thing to go when you are a patient is your dignity. So already I’m ahead of the game. I have quickly gone from being an independent human to being a mouse under a microscope. The only thing I can do is stand back and be amused.

Yesterday I reported to the radiology department at Munson Hospital in Traverse City. I was there for a MRI, which I believe stands for More Ridiculous Intervention. I had looked it up on the web so I had some idea what I was in for. First, some nice lady told me to take off my clothes. We had just met and I didn’t even know her name! I usually like to have a couple drinks before we get to that stage but they told me no food or liquid for four hours before the appointment. Then I was to put on some pajamas and slipper socks and put all my valuables in a tupperware container and take it with me. Maybe she takes credit cards - I don’t know. So I do all that and she tells me to sit in the waiting room until I’m called. OK.

So I’m sitting in the waiting room in my pajamas, watching TV. All I need now is a teddy bear. People are walking through and looking at me like I had escaped from the silly farm. Nice. Guess what channel is showing on the TV? The Food Channel! I’m sitting there with an empty tummy and this lady is showing me how to cook something yummy. It’s just not right.

So I  finally get the call and go to the MRI room. They ask me what kind of music I like and I reply classic rock. I lie down on this table and they strap me down, slap earphones on my head and stick a needle in my hand and slide me into this long metal tube. The inside of the tube is about 3 inches from my nose. Cozy. I hear Bob Seeger. That’s cool. Every once in a while the lady asked me to hold my breath and the tube makes the most horrible loud noises. Hey! I can’t hear Bob Seger! Keep it down out there! More breath-holding, more noises and then comes the final insult. The headphones start playing “Another one bites the dust” by Queen. That’s not funny! Actually, it IS funny and I start laughing and ruin a scan. Sorry! After 45 minutes of this fun, they take me out of the tube and I get to put my clothes back on. I even get to keep the socks.

And that’s how I spent my Thursday. Next trip: Another scan - this time with a long needle stick into my pancreas. I’m really looking forward to that.

chapter three

CHAPTER THREE
Life and Death

“I’m not afraid of death. I just don’t want to be there when it happens” Woody Allen

People talk about death like it’s a bad thing. It is not. It’s part of life. Life and death are not opposites. They are both part of the same thing. Call it life/death. You can’t have one without the other. Like birth, death is a passage into another place. We don’t know where that place is. To find out you have to go there. It’s a one-way trip. To truly live you must accept death. I’m not afraid of death. I’ll tell you why in two episodes from my life.

First, I must advise you to not try this at home. I’m not advocating anything, just telling you what happened to me. In May of 1969 I was camping in Colorado, in the mountains near Aspen. I had to opportunity to take LSD for the first time and I took it. I had a spiritual experience. I learned that the earth is a living, breathing organism and I was a part of it. I saw and felt the energy of every living thing and knew that it was all connected. I tapped into the “good vibrations” that Brian Wilson wrote about. It was a life-changing experience.

I have always been fascinated by science, especially the earth sciences and physics. Science tells us that energy cannot be created or destroyed, just changed from one form to another. I am not my body. My body is the physical container of the energy we call the soul. The soul is the life force and does not die when the body does. Religious people say the soul goes to heaven or hell, depending on how you live your life. I have no idea what happens to the soul, but I am certain it leaves the body when the body dies. My experience in the mountains showed me that.

My second experience was my mother’s death. I wrote earlier that my sisters and I cared for her and allowed her to die in her home. We promised her that she would not die in a hospital and we kept that promise. We did it with very little help from outside. It was the most difficult thing I have ever done in my life. It was also the best thing I have ever done. This was the person who gave us life and nursed us when we were sick. She was always there for us. There was no way we were going to turn her life over to anyone else. She died by inches, day by day. It was very painful to witness but it was a positive experience. We dealt with death every day until the relief of her passage. That experience created a bond between the three of us that is stronger than death.

 I am very grateful for all the support from friends and family. I will do whatever my doctors suggest to prolong my life as long as it’s a quality life. I do not intend to stay alive just to suffer. Keeping this blog is very therapeutic for me. I invite your comments.

chapter two

CHAPTER TWO
Team Building

Cancer is a member of my family. It has taken many people from three generations, including my mother who died of breast cancer in 1984 at the age of 61. My sisters and I took care of her and kept her in her home. She died there with her cat on her bed. My brother-in-law Skip has been fighting cancer for over six years.  He’s my role model. We have spent countless hours sitting in waiting rooms and hospital rooms. I know it’s a team effort. I need a team. My family will be very supportive of course, but unfortunately they are all over 200 miles away. Actually it is me who is 200 miles away. When I retired I moved here and have been living here since 1998.

I do not have many friends. Never have. But I have good friends and that’s more important. One real friend is worth 100 casual friends. These are people you can count on when things get tough. I went to my local friends and asked them to be on my support team. They all agreed immediately. I will be depending on them a lot in the coming months. You can’t do this alone. I know this from experience. You need help. I have good help.

You also need doctors. My primary care physician is like having a friend who happens to be a doctor. I like and respect him for choosing to be a general practitioner instead of specializing and making the big bucks. He works in a small town at a family practice. He hand-picked my oncologist who wears faded jeans and hiking boots. I liked him immediately. He tells it like it is, which I appreciate. I’m sure I’ll be seeing a lot of him in the near future. I also met a surgeon. He showed me the CAT scan and explained to me what I was looking at. He said that surgery was not an option and gave me copies of the scan. I’ll probably not be seeing him again.

I like to be in control. I don’t think I’m a “control freak” but others may disagree. A situation like this presents challenges for someone like me because you have to rely on others a lot. I’m also a list-maker. So in order to have the illusion  of control, I made a list of all my support team and doctors with phone numbers and email addresses and sent it to everyone on my team. I need to be active and have something to do. I need to think about giving others access to my financial affairs and other personal things. I need to review my will and make any adjustments there. I need to engage other people in my life and think about options for the future.

My thoughts and feelings about life and death will be the subject of Chapter Three.

Chapter one

CHAPTER ONE
I get the news.

It started with a pain in my gut. I ignored it for a couple weeks. That usually worked for me, but not this time. I made an appointment to see my doctor. After I described the symptoms, he thought it sounded like diverticulitis and gave me an antibiotic which I took for ten days. Pain was still there. Back to the doctor. He said we’d better get a CAT scan. I thought about the old joke where a cat comes out and looks you over. That wasn’t it. For those who don’t know what it is, you lie on a table and are slid into this huge doughnut that takes a picture of your innards. They had a flatscreen TV mounted on the ceiling, playing a DVD about Yellowstone national Park. It was pretty cool.

Later that same day, I received the call from the doctor. He said “I don’t know how to tell you this other than to come right out and say you have a mass on your pancreas”. Did I hear that right? Did he just tell me I have cancer?  I think he just told me I have cancer! My mind is racing. Omigod - I have cancer! I try to keep it together and listen to the rest of his message. He made appointments with an oncologist and a surgeon. There must be some mistake! We end the call and my brain is numb. What do I do now?

 I go to my computer and go to webmd.com and look up pancreatic cancer. I find that only 20% of people who get it survive. That’s not very encouraging . This cancer typically has no symptoms until it grows so large that it puts pressure on another organ. Then it’s too late. Even though pancreatic is number ten on the list of most common cancers, it’s number four on the death count. Surgery is not an option most of the time.

I let this information sink in for a while. I need a plan. I’m an analytical thinker who breaks a problem down to individual steps and tries to deal with them one at a time. How do I deal with the information I have while collecting more? That comes in Chapter Two.