Tuesday, 24 November 2015

11.12.15 What do you say to a dying person?

We had lunch with our son Adam the other day. He is a very sweet and gentle person. Joseph tells me he's always been like that. A heightened sense of care for others and rarely if ever speaking in negative terms about anybody or anything.

He was uncomfortable asking me if it was okay to ask me about the cancer. I said sure you can. I don't get very emotional about it anymore. It's probably because I write about how I'm doing in my journal everyday and discuss it with Joseph when we check in with each other as to how we are doing physically and emotionally. Now I have this blog that I get to chronicle my story. So I talk or write about it with regularity.

It's only lately - since my visit with my oncologist - that the idea that this is really happening is coming into focus for me. It means I'll be getting more and more people interested in being around me and seeing what they can do for me.

There is no protocol or guide book for this kind of thing. Everybody who goes through this is different. I like my alone time, and being the center of attention, small talk, or reminiscing is not something I'm good at. It feels like an obligation for me to go out and accept invitations to "be" with people. However I do understand that I need to talk about it and that people need to talk to me about it and I'm okay with that.

And of course some people are much better at talking about weighty things then others. They are good listeners: able to intuit what makes someone comfortable and what doesn't, how long to stay or linger on a topic, to understand that because I don't accept invitations it doesn't mean that I don't feel close to them or love them.

It's another part of the path.

11.20.15 Being a Dad

Never would I have dreamt I'd ever be a dad. Throughout my life I've had the chance to be Uncle Mark but never dad. I'm able to connect to children fairly well. I give them my undivided attention when they tell me stories. I don't necessarily know what they are talking about half the time - some TV series on Netflix or a game on Xbox - but I listen and throw in the occasional "wow" or "really and then what happens".  I'm also a cuddler and I give back rubs. Kids love to have their backs rubbed.

Now I have kids (not biologic) of my own and it feels good. When I went to pick them up for the weekend, Esther was in the driveway waiting for me and ran into the house yelling "Dad's here". It was a simple and natural thing for her. For me it was huge and reassuring that I'm doing the right thing.

Being a dad is not an easy thing to do. It comes with a lot of worry - am I approaching this the right way, how to keep them out of trouble as they go through there teenage years, how much freedom versus discipline do they need, are they getting enough love and attention - the list goes on and on.

Somehow it feels right for me this privilege of co-parenting with Joseph. We are a good team.

Monday, 23 November 2015

11.8.15 Creating Room For Beauty

Joseph and I are spending some time grieving. Grieving has many different meanings and forms. It can be constructive or destructive but the core is a lose of something to which a bond or affection has formed.

I have to this point worked on grieving the loss of something physical. My inability to ride my bike, go to yoga, and now with the coming of winter skiing. All things that have brought me so much happiness and contentment throughout my life. I've remarked many times how there is no problem that a good climb on a bike or a walk on fresh snow up a mountain didn't take care of.

I can no longer do these things because of the pain and fatigue. Pain like a toothache that bores and is unrelenting. A pain that can't be shaken off and requires days to recover from. A pain requiring increasing doses of medication to keep at bay.

And now I, we, are grieving the loss of a life we could have had. Being together for many years. Watching the children and grandchildren grow up. Seeing their failures and successes. Both of us having fulfilling jobs where we contribute to our family and community. Learning to paint. Learning to balance life.

It's important for us to do this now so that when it gets down to crunch time we have completed for the most part being tossed around by emotions that seem overwhelming and beyond our ability to control. To leave the space huge and open for love and celebration of all things beautiful rather than the small and confined space of grief and sorrow.

11.11.15 Naps

I've come to finding time to nap. First of all it's because I get really tired by mid-day even though I haven't done anything physical and second because it helps fill my day. I'm tired because of all the emotional burdens - worry about what will happen to Joseph and the children, boredom on days of overcast skies and cold temperatures, motivation, purpose, discouraging societal events and trends.The best nap is when I'm covered with a blanket and am toasty warm and the house is completely silent. The dogs - the only time they are allowed on the bed - are curled up next to me. Joseph usually lies down with me to cuddle and envelop me with his love and then lets me go.

I get to go to lovely places in that space thats just on the verge of a deep sleep. They aren't geological spaces but spaces that are occupied by big objects that are smooth, neutral in color, and very light. On occasion there is an incident on the periphery - a human figure or an event that I don't recognize - and then it's gone because I so much want to be back to the shapes. In that space of neutrality I find a great amount of contentment and peace. There is no story. There is no angst. There is no striving. No judgement.

Typically I wake from the nap because I have to shift position to avoid one kind of pain or another. That requires big movement of the dogs and blankets and time for the dogs to resettle. As desperately as I try to get back I can't and I know nap time is over. Other times I startle to a noise and then I'm up.

I'm sure where I go in my naps will become my jumping off point as I leave this physical incarnation. It is so peaceful and without fear or distress of any kind.

I understand now how important it is for there to be such a space when someone dies. Not a place of pushing, pulling, turning, poking, prodding - vital signs, blood work, pain scales. Not a place where there is emotional and physical distress - loud voices, crying, story telling, bickering. A place of quiet and peaceful energy - unconditional love - compassion. When I leave I hope for silence, warmth, cuddling with Joseph, and no pain either physical or emotional.

I love my naps.

Friday, 20 November 2015

11.6.15 Why No Chemo Or Radiation

I decided early on in my journey with cancer that what will be my guide is suffering,  the goal being to eliminate as much as I can at every turn. Some is unavoidable, such as the pain and grieving for things lost, but a lot is avoidable.

In my experience as a physician I have been a part of many people's journey with advanced and terminal illness. A large percentage decide that they want to live at all cost and are willing to endure whatever is necessary, whether it's to be with family, finish projects, fear of death, or a guilt associated with the thought of "giving up." There is another group that don't understand that they have options and will do whatever the doctors or strong-willed family members think is best, leaving it in someone else's hands.

My cancer is not curable. I don't believe I'll be that one in a trillion where for some reason (and I'm not going to use the word miraculous) the cancer goes away and I am allowed to die from some other cause.

I certainly could add the options of radiation and chemotherapy treatments, but these will require taking on suffering. The increased time spent on doctor's visits, receiving treatments, and the side effects and incapacitation associated with them are not part of my journey. 

I look at it this way: there will be no avoiding suffering as the end draws closer, so why would I want to prolong that period of time? I'd much rather take the time and energy I have to live the remaining days of this incarnation in contentment and peace. I'd rather be at home with my husband rather then in waiting and treatment rooms, visiting with friends and family, walking the dogs, painting pictures, and hanging out with the children.

I worried initially that when the time came I'd not be quite so brave and cave in, but as time has gone on my resolve has deepened ... as has my acceptance.

Thursday, 19 November 2015

11.5.15 What's Next

I noticed again this morning how mottled my skin was from the waist down. My capillary refill time was delayed. I don't have swelling in my legs but they look so dark and unhealthy.

I can't live without pain medication anymore. It used to be an occasional 400mg of Motrin but now it's straight up 800mg 3 times a day with several oxycodones thrown in to cut the pain breaking through and then morphine at night.

It leads me to ask the question what will happen next and when. Prostate cancer metastasizes to bone (already have that), liver, lung, and brain. My decision still stands to not do chemo or radiation and let things progress naturally and to treat symptoms aggressively. So I imagine that when something else shows up my time will be sharply reduced. Weeks. Months at the most.

I can do this.

Wednesday, 18 November 2015

10.17.15 Letting Go

I've been blogging about our recent travels. At first I struggled with the idea. I thought it might be construed as grandstanding. See what I get to do everyone.

The general feedback is that people enjoyed reading about our adventures. I got over the shyness of it if you will.

Now I want to share my next trip. I want to share my experience and keep it as a lasting record.  I write in my journal everyday but of course a lot of that is chit chat with myself and personal to me - trying to figure out how my thoughts and emotions drag me around. Giving me some help with what to let go of and what to hang on to. Essentially don't hang on to everything but thats the path isn't it.

I'm not going to post my blog on Facebook or via email. I just want to write of another journey. Something that may or may not help others going through struggles wether it be cancer or some other bump in the road and in the process help me to let go.

10.20.15 The World Goes By

I was sitting in our den this last weekend watching the world go by. I could hear the kids shouting and laughing on the playground on the other side of the park. I told Joseph how thankful I was that they put the playground on the other side of the park because even over there we can plainly hear the kids.

The cyclists were rolling by having their conversations. We live on a cyclist thoroughfare to the canyons. People out walking their dogs. Running.

The sensation I had was one of being stationary. Maybe moving backwards some as the rest of the world marched on to the future. I have had the future taken away from me.

As the sages have taught the future is an illusion. It has no solidity. It's this very moment that matters; yet when the future is removed from the equation it creates a noticeable void.

I'm whittling myself down both emotionally and physically as I prepare to leave.

Tuesday, 17 November 2015

10.21.15 Not Trying

I saw a video this morning about a man in India who was 70 years old. He sells goods on the street and to get to his spot on the street everyday he has to walk a fair distance both to work and back home.

I'm not sure I'm trying hard enough. With minimal exertion I tire. With small pieces of physical activity I hurt. Many people have the same problem yet they go on and endure most of the time because they have to.

Is there ever a place for suffering just for the sake of suffering? Does it add to the experience in a positive way? I heard a friend describe cycling as a sport of suffering. It's a true statement - if you want to ride seriously you must be willing to suffer mentally and physically. Cycling and I were meant for each other.

For most of my life I've felt that for anything to be worth anything one needs to suffer. It's part of my Lutheran upbringing. Am I not trying hard enough with this cancer journey. Does it require suffering to somehow make it "worth it".

10.20.15 The Paradox

For the longest time I had difficulty connecting to the cancer. I got to go to the gym. I participated vigorously in yoga. I could ski and ride my bike. All as if nothing had happened. Not even a blip on the radar to let me know I had cancer.

There were changes related to the medication or more specifically the dwindling away of testosterone. Most of the time, short of a monthly reminder - visiting my oncologist - I questioned if they had the right person. How could I be this healthy and vigorous with a terminal diagnosis.

I dreaded the monthly PSA test. It was like a test score. A test I had to pass. At first I would be anxious at least a week before the blood draw. Unable to sleep. Poor appetite. Difficulty paying attention. Most of the time there was celebration or sense of reprieve. Yes. I'm going to make it at least another 6 months.

When I started Xtandia (androgen blocker) I knew it was the last step for me. Making the decision to forego radiation and chemotherapy left me with this one last medicine to try. With my oncologist's and husband's agreement, we decided a few months ago to stop doing the monthly PSA test. No need to mentally torture myself if there was nothing we were going to do differently with the results. It was a good move.

The disease will progress onward but there is one less test I need to pass.

Monday, 16 November 2015

11.16.15 Moving Day

My mom moved today. She recently suffered a small stroke and it became clear that going back to her condo was not going to be an option for her.

My mom is pretty stubborn and when you add onto that a bit of dementia exacerbated by the stroke we, her family, were expecting a fight. But then it didn't happen. She went along willingly.

Most of her children live far away and for a decade now Deb and her husband Neil have been looking in on at first both of my parents and then my mom alone because we can't. Not entirely true. We could have but it would have required a full transplanting of our lives to be close to her and taking our turn.

Deb and Neil have been steadfast and diligent in taking care of her. Slowly and methodically they took her from this stroke, it's rehab, and by far the biggest hurdle convincing her a move to assisted living was for the best.  They also got the important things moved to her apartment and made it familiar to her and now will continue to work at dismantling her condo one memory at a time.

My mom sounded happy and relieved when I talked to her from her new apartment.

Thanks Deb and Neil for your hard work.

11.14.15 Movie Trailers and the Holidays

We went to see the new James Bond movie Spectre. It played at the newly remodeled Sugar House theatre the first time Ive been and it was wonderful. A full reclining soft seat with your own armrests on both sides. I nodded off to sleep several times because I was so comfortable and the movie wasn't the greatest.

The previews before the movie were significant because I was more interested in the release dates, wondering if I'd still be here when they came out. It felt unfair to be enticed by a movie and it crossed my mind several times wondering if there was a way I could get an early screening so I wouldn't miss it before I have to leave.

We are having the Utah Thanksgiving here next Saturday because we will be going to Portland to spend it with my side of the family. Last night we were finalizing those plans. You know, who was all coming, what the menu will look like, and what people will be bringing.

The Christmas holiday was also discussed. Since we will be leaving Christmas morning - again to spend the holiday with my family in Portland after an early celebration in Utah and going directly from there to Florida, we wondered about the value of putting up a tree here in Utah. Ive been advocating against a tree but last night I changed my mind.

At the current trajectory in my health, it is highly unlikely that I will get to celebrate another holiday season. I've been trying to come up with a word that describes how I feel about that. I don't think sad is the word I'd use. It's more a feeling of inevitability that carries heaviness with it and leads to a melancholy.

So let's put up the tree. It's Joseph's act of love and it seems silly to deprive him of that.

Saturday, 14 November 2015

11.13.15 Painting Angst


I go from motivated and enthusiastic to frustration and regret. I have so many ideas for art work in my head and they are usually way too involved and technical. I've learned to paint small and simple things to work on my technique but they leave me uninspired and I finish them just to get them done.It's times like these that I regret not having spent more time in my life learning and practicing and now feel like I don't have enough time. But I made choices. I decided to ski, ride my bike, garden - doing physical things - rather than painting.

My work as a physician was void of creativity as were all the other physical pursuits. At the time I would lament the fact that there was such little creativity in my life. That's how things go.

One thing I l've learned is not to abandon projects too quickly. Although they may not turn out precisely as I had imagined they do teach me something and by persisting there comes a sense of satisfaction.