Warning: the first few paragraphs of today's entry is not for the squeamish.
Today my Foley catheter was removed during my visit to Johns Hopkins. 20 consecutive days of having a Foley is no fun. I was glad to be rid of it. The nurse deflated the bulb, then said, "take a deep breath" and . . . shhhhhttttuuuuup! The nurse helpfully told me after that my going cross-eyed during that procedure is a common reaction. Uh, thanks?
But it was not all sweetness and joy; the same nurse who removed the Foley immediately grabbed an evil-looking probe and happily announced that I would now be taught how to self-catheterize. Apparently this is an essential skill once the SP tube is removed, and mucus has blocked my urethra and is preventing me from voiding my neobladder. The act of self-catherterization is as unnatural as punching yourself in the crotch, and it feels about the same way. I did find that it is possible to do while cross-eyed, however. I hope to never have to do that again.
Once my voice dropped a couple of octaves, I was given a plug to use to stop the drainage of the SP tube, and was instructed to let my neobladder fill with urine. I am to practice draining it every 4 hours, night and day. The trick is to use my lower abdominal muscles to squeeze my neobladder, and control the flow. The exercise is almost identical to kegels, which every woman who has given birth knows well. After I try to empty my neobladder with kegels, I am to uncork the SPT and measure how much urine comes out through that tube. My goal is fewer than 50 cc leftover.
I am supposed to master all of this in a week. I have an appointment to go back to Hopkins next Tuesday and have my SPT removed. But if I have not reached the 50 cc goal consistently, I'm supposed to cancel and reschedule for the following week. So now I am focused on re-learning potty training.
After all this fun had concluded, we met with Dr. Schoenberg, who strongly advised us to find a second line therapy, but not take the first thing that came along. (GemCis chemo was the "first line" of defense; it's no longer an option since it failed.) He was aware of the Dendreon clinical trial that Dr. Steinberg had identified, and said that Hopkins might soon be opening it. But he was not particularly excited about its efficacy. He suggested that we consult with the Hopkins oncologists, and also consult with oncologists at Georgetown and NIH, and pick their brains on second line options. He encouraged us to carefully evaluate both the clinical trials and therapies outside of the trial setting. We have an appointment with the Hopkins oncologists this Friday. I have a call into the NIH oncologist, and spoke with the Georgetown oncologist this evening, and tomorrow will call her scheduler to set up an appointment. Dr. Schoenberg made clear that now, more than ever, it is important that we to take charge of investigating and directing my treatment options.
We also asked Dr. Schoenberg about my prognosis. He said he no longer made guesses about how long a patient would live, because he's been wrong so many times. He allowed that my condition is "quite serious", and didn't disagree when I said that the odds were slim that I would survive more than five years. We then put the question another way - what was his advise for my planning my life? Do I go back to work? Do I stop working and do other things in life? He responded by asking my view of work: did I love it so much that I never wanted to retire, or did I hate my job and couldn't wait to get out? I responded that I very much enjoyed my work, but it was a means to an end, and there were other things in life that were more important. He said that, if he were in my shoes, he'd want to take a hard look at the financial situation, and whether he could afford to stop working. If he could, he'd probably walk away from work and go and do the things that he would rather do. He cautioned that, should I choose to do that, I should have a specific idea of what that was, because he'd probably go crazy sitting around the house all day.
It was an interesting conversation. I'm finding it's hard to nail down doctors on a specific prognosis. I intend to continue to explore this theme with the other doctors that I meet, and maybe a consistent thread will emerge.
At this point, I have no idea what I'm going to do with regard to work. If I knew that I was completely cured, or there was a very good chance that I had the cancer beaten, then I'd be chomping at the bit to return to the office. I'd be working from home, sending dozens of emails each day, and reinserting myself into my cases. But that's not where I'm at. Unless I am able to find some experimental treatment that stops my cancer in its tracks, the odds instead are very high that the cancer will return in one or more distant locations, and when it does, my days likely will be numbered in months. If and when that happens, no one knows.
Readers, what do you think I should do? Leave your comments (anonymously if you want), or send me an email.
Pray for guidance. Pray for learning the information you need to make a good decision. Pray for help in making the right decision. Then make a decision. Pray about that and know if it right. This is too important of a question to leave to chance or other's words. You must feel in your heart that which feel right. Please know that you are in our prayers.
ReplyDeleteLove,
Jamie
Ken:
ReplyDeleteOf course, do the above. But certainly a part of this is understanding yourself.
Where do you find your joy? Doing well at work can be a very creative process that gives a sense of empowerment and energy. I fully believe that God made man to work; that a part of being fully human is through labor---aka improving the world.
Having said that, however, in your case, you have climbed the work mountain and reached the top. Are there other life objectives you want to achieve? What will you regret not having done? Are there specific things/activities/experiences you want to do with your wife and children? What memories do you want to have for yourself and which ones do you want to leave for your family? Identify these. Then prioritize.
Ask yourself questions: If you leave work now, does that mean that you can never return--in some capacity? Can you stay involved by being of counsel, by teaching, or taking on a limited caseload? Do you have to work full-time to be engaged the way you'd like to be? If you continue to work full time, what are your giving up? In the case that your health declines further, what do you want to do that takes the maximum amount of energy, and therefore should do first?
How does your family feel about downsizing or moving to a smaller home? If that is inevitable if you die, then should you do that now and be a part of the process instead of leaving it to Jennifer to do later at some point?
What do your family members think? What do they value? Would they be more comforted by taking a year off school and spending it with you and going around the world (for instance), or by having the "normal" life they've known with as few changes as possible? What kind of future memories do they want to share with you?
I know this is more than difficult---that there is nothing really to prepare us for these kind of decisions. For most of our lives, we know what will come next. We may not like that "next", but we know what it is. For things like this, the future is completely blank, and that makes it much harder to know what to do.
My basic advice would be that you pray, and then listen to your heart. Having no regrets about our choices means that our life is a happy one---no matter how long it might be.
Your friend,
Renee Tietjen
I read your latest blog entry and decided to make a few comments from my cynical viewpoint. ;)
ReplyDeleteThere is more to life than work. I know how it feels to go to work loving every minute of it and sometimes wondering why anyone would pay me to do it however there is a lot going on in the world if you do not go to work any longer.
Once you have your family looked after, in the manner you want then to be, after you are no longer there to provide for them what good is the excess?
There was a very interesting article in the WSJ in February and it can be found by Googling Why Doctors Die Differently.
As you have found out medicine is like law. It is a best guess business at best. You draw on your experience and studies and then is is all statistical data. If you go to a lawyer with a problem most will find a way to have you as a client even if it is unlikely to win. Goes to the expression you know - When you are a hammer everything looks like a nail. Everyone wants a doctor to tell them how long they will live but that only works on TV. I learned that when you ask a Doctor a question about treatment it is very important to word the question properly to get even close to the truth. For example if you ask a Doctor who they would recommend treat you I have heard them mention Doctors they have said they would not let treat their dogs. They are very careful not to ruffle feathers because of many factors like referrals. If you ask who they would send their mother to it usually gets the better response. So in your case I would be asking questions more along the lines of what they would do or what they would have their mother do.
Family and friends have motives that can be more selfish than in your best interests. We usually do not want our loved ones and/or friends to leave us so recommend things based on what we want rather than what would be best for them. I have asked Doctors many times why people always seem to want a full court press for their relatives treatment when their is little chance of any quality of life time left just quantity and they say it is usually from either guilt or that they have not had time to say goodbye.
I always find the answer that if you pray all will be revealed to be interesting. I think in this case it would not give you an answer. Your faith has looked after you as you have shown in your blog. You are content with what the future holds as far as your after life goes. That is what prayer is usually for. This life is a more practical place with more concrete issues to deal with.
Ravonne and I both know that even with our medical knowledge not to interfere in peoples treatment decisions. It will only lead to either guilt that we were wrong or that we are unhappy with the results because our advice was not followed. It is extremely hard to bite ones tongue, if like me, you do not have filters but it is what we try to do.
I know you will do what you feel is best for your family and in the end you and wish you all the best in those decisions.
I will not pray for you as that would probably be detrimental to your future. :)
The only thing that I would not want is to be at the end and say I wish I had completed my bucket list.
You only go through this place once - enjoy.
Ian
First, I feel you on the relearning to pee thing. I had to do that after I had my catheter removed a few weeks after an invasive surgery. NO FUN. Not that I know what it is like to have all those other tubes draping out of me! When I was going thorugh the retraining...I kind of missed my bag!
ReplyDeleteSecond, I have no advice. When you asked at the end the first thought that jumped into my head is do stuff with your family, throw yourself into service. But I am also one who throws myself into work. I like being busy and I like being productive but that can come in many forms. Travel. Do things that you were planning to do when you retire. Then get well enough to sit in that hot tub!
We love you,
jenny
That is such an interesting question. "What do you think I should do?"
ReplyDeleteWhat would I do in your situation? No clue.
What should you do in your situation? In my opinion, live while you can.
I guess that is what we should all be doing - living.
Taking notice of the things around us.
Helping, loving, hurting, caring, not-caring, crying, laughing, eating, drinking, sleeping, working, trying, failing, spilling, cleaning, praying, losing, winning, watching, reading, walking, sitting, surfing (the net), doing, procrastinating, whining, whistling, painting, writing, dare I say sinning, repenting, arguing reflecting, and insert ...ing.
I think that all we have to do is what we can do, and that the can in our do is the stuff of life.
Josh