March 4

February 28
Yesterday I called Dr. Palchak's office and opted out of my chemotherapy session set for Friday. I don't think that it is doing much for me. I was very fuzzy-headed for quite a spell after my last session and I want to be as clear as possible for the next phase of illness.
One of the things that I have noticed is a tendency on my part to enjoy watching people smile--this can be in real life or on television. I am also much more aware of length of life when it is mentioned in a news brief. Yesterday, I came across an article about George Kennan who lived to be 101. I thought.."wow...another 30 plus years beyond mine...what would that have been like?"
Dana is my youngest brother, born in 1959, 16 years after me. He is incredibly smart and started his own newspaper when he was 19. The paper was called "It" and was initially directed at students and faculty of the University of Maryland and expanded to other colleges and night spots around the D.C. area. The paper was not a successful commercial venture but was an important failure for his professional growth. He had some time after the demise of the newspaper and I invited him to visit me in Billings to write a manual for a software program that I was developing with Ed Puckett. We spent two or three weeks working and hiking together. We got close and have stayed close ever since.

Dana and Wife, Therese

So, we've had two long rides of about 8 hours each in the past week with the opportunity to talk about a number of things, particularly our current sense of impending loss.
Our Las Vegas reunion included 7 families who came from New Jersey, Maryland,  Virginia, Colorado, San Francisco, Berkeley, and Mazatlan. My brother, Kirk (b. 1956) was a primary chauffeur and made several airport runs.
It was wonderful to have all of my siblings and their children together at the same time.

The Sohr Kids: clockwise Sue, Dana, Kirk, Geoff, Eric--September 2006

Las Vegas was an amazing value. The Station Casino buffets at Green Valley Ranch and at Boulder Station were remarkable for the variety and the price, particularly if one acquires a "rewards" card. The Bellagio buffet on Saturday night was also bargain when factoring in variety and quality. I particularly liked the Sushi, the variety of seafood, exquisite pizza, fresh vegetables and fruits, and pastries. (As you can see, the only thing that is working for me these days is my Alimentary tract.)
There were a couple of moments for tears. On Sunday morning I was sitting at the breakfast table with 20 family members and I was watching all of the wonderful interaction. I thought how much my mother and daughter would have enjoyed being there with everyone--and I was experiencing my loss at seeing most of my family for the last time.
Other good times over the weekend were spontaneous with folks piled into one hotel room or another shooting the breeze and telling family stories--several of which you would have recognized from previous posts. I have accumulated a couple of dozen bottles of wine over the years. If I do drink, it is never more than about 1/2 glass. Jasmine doesn't drink. So it's open a bottle of wine; use no more than a drink;  then cook with it and wait for it to turn to vinegar. My wine cellar for the past few years has been cardboard containers under my bed so as not to waste space in cabinets. This trip allowed me to create space and fight the dust bunnies.
As the room filled with people, the bottles of wine slowly disappeared, voices were raised in merriment, and laughter supervened.
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As you might imagine, as my time ticks down I am increasingly focused on my plans for the last few hours of life.
"What do you want done with your ashes?" It doesn't seem crucial to me. The nicest place to scatter them would be the graveyard on Smith Island.
"Do you have any requests for your service?" To quote Bob Hope when asked where he wished to be buried, "Surprise me!"...but no, I don't have any requests right now.
There are some apologies I owe where there is no longer any possibility of making amends. I do have to get started on some of those.
There are letters I need to write to others and I'm still hoping for some honest conversation with family and friends.

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In addition to last few days, I have concerns about last few minutes and last few breaths. This brings up the issues of right to die and euthanasia.
I happen to take the position that we have the right to be in control of our passing from this life. Although I think that there can be value in suffering, that value is diminished when in the embrace of a terminal illness. I fully believe that some safeguards to prevent action in depression or in pain be in place, provided the safeguards are not constructed exclusively by those who are opposed to the right to choose the timing of one's death..
For those who do believe that we are justified in exercising that control over the future, we have to make certain decisions about the timing. If we are planning on an assisted-suicide, there is less need to be concerned about our physical abilities because we are ceding control to another. However, if we are intending to act without assistance in pulling the trigger (a preferable way in most states to avoid possible charges of assisting another to die) we need to pick an exit time when we still possess the necessary physical strength and mental ability to be successful. We'd like to only have to do this once.
My knowledge of the literature on the topic is limited to Final Exit by Derek Humphrey and To Die Well by Wanzer and Glenmullen. Plugging these titles into Amazon will bring forward some other candidates.
Naturally, I was most interested in the chapters specific for self-directed departures. The focus in both books was on two methods--lethal medications and inert gases. Barbiturates are the medications that have a long history of "successful" use as a toxic agent. The short acting agent secobarbital (Seconal) is increasingly more difficult to find. It is an old-time sleeper and has been replaced by newer sleeping agents that are much less toxic. The lethal dose is as variable as human genetics. 9 or 10 grams is considered a certain lethal dose.
A possible scenario for obtaining Seconal is to "start early" in acquiring a supply. I would approach your physician with an inquiry about his/her stance on your right to determine your time of departure. If an equivocal response, network among other cancer sufferers to find a more open physician. You might want to check out the physicians associated with your local hospices. Your next move is to request medication for sleep. I would mention that in the past you had used a few sleepers and that Seconal appeared to work the best for you. The physician is more likely to ask you to try something safer and to prescribe a few alternatives. Smile and accept all the alternatives. Wait 72 hours and call the physicians office for another appointment because the sleepers didn't work. Hopefully, after two or three tries, a prescription for seconal is forthcoming. As for a month supply. It will take three months of 30 tabs of 100 mg to acquire the lethal dose. The copay for seconal is especially heavy at $50 a clip with my insurance.
The books recommend that one eat pills as fast as possible in order to get 90 down before falling asleep. An alternative is to open the capsules and mix the powdered drug with applesauce and to down the small amount of applesauce in lieu of swallowing pills. This makes more sense.
Here is the procedure I would follow for seconal.

1. Mix 9 grams of seconal powder with applesauce--I'd give 4 oz a try.
2. 2 hours before departure time, use an anti nausea med (antiemetic preparation). I like Odansetron (Zofran), or Phenergan or Compazine.
3. 1 hour before lift off, use a dose of lorazepam (Ativan) 1 mg for uninitiated--your usual dose if it's something you already take like valium or serax. 
4. It is well known that Alcohol increases the effectiveness of barbiturates. One hour before might be a good time for cocktails with your supporting group. Don't drink so much that it increases your risk of nausea.
5. At 1 hour before departure, you might consider a little more opiate, like morphine or whatever you are currently using, but not so much that you increase vomiting risk.
6. Remember that our goal is to get down a lethal dose of seconal without any reflex vomiting occurring after you have fallen asleep from the medication effects. You need to keep down the lethal dose.
7. At departure time, eat the applesauce. Don't dawdle because you will go to sleep fairly quickly and you need to get the medicine all down.

The above mentioned books provide many more details about Seconal. Both also cover the use of "inert gases" primarily helium which is readily available in disposable tanks intended for balloon filling. As part of my research, I ordered 2 tanks online. With shipping, etc. each was about $64. The authors of Final Exit and To Die Well describe the use helium as representing a potentially painless way of exiting. Their argument goes like this--our respiratory drive is associated with our sense of smothering. If we look at the information on waterboarding, it only takes a few seconds before the smothering supervenes. The sense of smothering is triggered by sensors in the brain that detect carbon dioxide and oxygen, but that it is primarily carbon dioxide that accumulates rapidly and initiates the sense of smothering. The authors claim that low oxygen does not cause distress. As long as one can continue breathing, it blows off the CO2 and prevents its accumulation. So the breathing of helium replaces oxygen without disturbing CO2 and allows the brain to shut down from oxygen lack in a minute or two without distress. As one continues to breathe helium, the brain suffers from anoxia, consciousness is lost quickly and brain death occurs within about 15 minutes. There are diagrams in the books demonstrating a helium hood that can be fashioned from readily available materials.

Well, I really liked hearing about the helium method. After reading the books, I decided that it would be my first option should I see it to be necessary. That's why I ordered the gas. However, since both of the authors were still alive, I decided to check out the painless claim with a friend. We gerry-rigged a tank to my cpap machine and did a trial run. The goal was for me to demonstrate oxygen deprivation by failing to maintain a hand signal and to do so without experiencing air hunger. I failed--the air hunger kicked in within 20 seconds. Both authors who recommended the method were still alive. I decided to try again using a medication for anxiety before the trial. I was unable to find any ativan. So I used additional fentanyl quick-acting. I doubled my breakthrough dose and waited about 25 minutes and tried the helium again. Maybe I went a bit longer, but the result was the same--absolute terror. Conclusion: this method leaves a lot to be desired for me.

After my experiment with helium, I decided that I'm going to give a call to folks in Oregon tomorrow in order to find a place where I might go to get some help. I'll do my best to keep people posted. It appears to me that there might not be a fail safe method for me that doesn't potentially compromise my friends. Given the current situation, I would have to elect to use seconal. However, if I were not dead within an hour or two, I would want to add the second method--i.e. the helium. I will be far below sufficient consciousness for my respiratory drive. The use of helium to eliminate the oxygen should end things very quickly. However, it would take someone else's hand--and that is too much to ask because of the possible legal burdens.

March 4. It has been a very tough weekend. I awoke on Friday with a fever and a headache. My pulse was generally around 130. My oxygen saturations were in the high 80s. My brain was very fuzzy. The most likely cause of a fever for me is a pneumonia. I felt so crummy I was hoping that this would be a terminal event...no such luck...just a miserable couple of days. The fever went away on its own and I decided to take an antibiotic. I could live pretty well with my days from last Wed and Thu. On Friday I ended up stuck in my recliner in recline and was too weak to get up when the doorbell rang and rang and rang. I was finally able to get up for the hospice nurse and she went through the intake procedures and  left a comfort kit of senna for constipation, morphine for pain, lorazepam for anxiety and nausea, phenergan for nausea, and decadron as a steroid. A hospital bed and walker and were ordered for me.
Today Luis and Desiree came by with the baby and moved furniture around in the front room to accomodate a hospital bed. It will be nice to have everything I need on one floor. Generally I use the TV room, bathroom and bedroom downstairs for recreation, work, toileting, and dressing--but that has gotten harder to manage...
Jasmine has been overworked handling her day job, doing errands, filling rx's, getting me food and drinks, rearranging furniture, etc. She asked me to ask my family for help--to have someone around when she is at work because she worries. We called my brother Kirk and he said he would be here tomorrow--pretty amazing! Thank you, Kirk, and thank you for letting him go for awhile, Claudia. This is so helpful.
My canine partner has decided to wind down from the busy week.