Mets Day 789 - Reshuffling the nest

Last week Chelsea, Josh, and baby Rose moved out of our basement apartment so Chelsea could start her medical residency in Utah. The week before they moved, Jennifer and I cared for Rose 24/7 while Chelsea and Josh went on a well-earned vacation cruise. We loved having our granddaughter with us, but also realized why people in their 50's are not supposed to be new parents. The house seems much quieter with them gone.

Spencer quickly seized the opportunity presented by having the apartment vacant, and moved all his stuff downstairs. He says he's going to be buying his own food and try living on his own while finishing college.  I think it's a great transition for him.

Meanwhile, this past weekend I hosted at our Lake Anna vacation home 12 people from the Potomac Pathways, the intensive outreach program where Spencer works as a peer mentor. I spent all day Saturday on driving the boat while the young adults were tubing, wake boarding, water skiing and tanning. I was sunburned and exhausted by the end of the day, and well worth it. It's a pleasure to be able to help struggling people have good, safe, wholesome fun. 

The last few days of May, we hosted my older brother, his oldest daughter, and her 12 month old son, as they visited the area. I don't get that much time with my brother, as he lives over 2000 miles away, s it was nice to spend some time together. We visited a couple of the Smithsonian museums. (I'm embarrassed to say that the only time I go there is when out-of-town guests are visiting.) 

When I see other people, they comment that I am looking well. My hair has grown back (although it's much curlier), I've gained weight since my last round of chemo, and I appear to have decent energy. In short, to others I don't look like their preconceived notion of how someone who has stage 4 metastatic cancer should look. I hope to keep it that way. Nevertheless, I remain cognizant of my tenuous physical condition, and am mindful and grateful for each day.

Each Monday, I receive an email from BCAN listing all of the recent questions posted on the discussion boards at inspire.com. I review the dozens of questions posted in the past week, and add my thoughts when I have something to contribute.  Recently, a 39 year old woman whose father is dealing with bladder cancer asked:

I was just wondering of anyone else disagreed with the treatment choice of their doctor? If so do we have a say or do we have to go elsewhere???

I replied:

I am a strong advocate of the patient taking charge of his or her care. I read a lot of the medical literature (my background in patent law has helped my understanding), wrote down my questions in advance, frequently recorded my interactions with my doctor so I could listen to them again later, and explored all of my alternatives. I consulted with and continue to be followed by doctors from Hopkins, NIH, GW, Fox Chase, and U. Chicago. I've also consulted by phone and email with doctors from U. Mass. and M.D. Anderson. I feel fortunate to continue to be followed by some of the best BC doctors out there.
I've been Stage IV for more than 2 years, and there are no established therapy regimen -- instead, each patient is treated based upon how the cancer appears to be acting. Having such a team of doctors requires a willingness to take responsibility for your own care, because the doctors don't always agree with each other, and are quick to acknowledge their biases and limitations. For example, when my BC spread to nodes in neck, I had 3 of my doctors recommending salvage chemo, and two telling me it wouldn't do any good. I've appreciated the frank advice from each, and feel that I am managing my care with as much information as possible.
Several of my doctors have told me that I am a highly unusual patient because I read the literature, carefully explore the alternatives and risks, but am not grasping at straws or wishful thinking. My docs tell me that most patients just want their docs to announce the course of treatment and do it. As most readers of these boards know, however, depending upon the staging and co-morbidities of each patient, there are a lot of different BC treatment options from which to choose. In my opinion, it is better to know the options ahead of time instead of having later regrets.
I know the odds are against my long-term survival, have updated my will and advanced medical directive, and have found peace and joy in living one day at a time. In the meantime, I blog about my life with mets BC at http://kwbcancerblog.blogspot.com/. All are welcome to see if there is anything that might be of use to you.