Saint Francis Hospital Hospice

Mark and I are parked on the 6th floor of Saint Francis Hospital in Trenton, New Jersey. His dad (90 in January) was admitted to hospice this week. I have never been to a hospice before. His mom died in a hospital in 2004. But it feels very familiar. He has DNR status, so the only support he is receiving is morphine (injected through an IV), and some oxygen through the nose. This is the 3rd day without any food or liquid. He is tough! He has had dementia for at least a year and it had started to affect his ability to swallow. Which leads to the lungs filling with fluid. We can hear the death rattle as we sit here. The impulse is to run and find someone to intubate him, to feed him. But Mark and his brother decided together that this is the right thing to do. It's what Daddy-o wanted, too. But it's really hard to witness this.

I drove down last night.

We don't know how long he will last, but given that he has had no fluids for several days now, we expect the end of any moment now. Last night the priest and nun came in to give last rites. He was raised Catholic although he converted to Evangelical when Mark was a teen. We talk to him, rub his shoulders and head. And pray for a comfortable easing out of this life.

All Clear!

Everything is perfect -- scans, bloodwork, physical exam.
Just as I thought, The Vixen wants to stay the course.
We will stretch the scans out to 9 month intervals rather than 6 months. And I'll stay on the Lupron and Tamoxifen. In a few years she might switch to another medication rather than Tamoxifen but no changes now. I'm fine with that.

She did say that she will present my case to the Tumor Board at their next meeting. She has another patient like me who is 18 years out! Talk about an outlier! She is not sure about the timing of making any changes in my management, but I have learned to live with ambiguity and uncertainty.

I celebrated by going back to work. Ha ha.

Insistence and Urgency

At 9am, Lucy and I will meet with The Vixen for scan results. I am totally confident that everything is fine. If there was a problem, she would have gotten the results the same day (last Friday) and would have called me. So I'm assuming that all is well. Now that I have passed the 5 year mark, we will at some point be talking about going off treatment altogether. I am 52 now and was in peri-menopause when all this started in August 2008. The Vixen tends to be rather conservative and takes the view, "if it's not broken, don't fix it". I am doing really well so why mess with success. On the other hand, any and all medication has side-effects, especially if taken for a long time. I would certainly be happy to say goodbye to Tamoxifen!

Lucy has been with me to almost every appointment including tests, surgeries and consults -- for the last 5 years. What an amazing friend!

Mark will not go with us as he is heading to New Jersey. His 90 year old father who was in a nursing home had a fall that landed him in the hospital. He was cleared and returned to the nursing home, but they sent him right back to the hospital due to mental status change. He had a brain MRI which showed significant deterioration. He has been on DNR status for some time now. The last few days he has refused to eat or drink, and no one is going to force him to do so. So his days may be numbered. I just hope that Mark gets there in time.

Last night I went to Narayan's class. We are working with renunciation this term and specifically she is asking us the last few weeks to look at clinging. The homework has been to notice when we approach situations with insistence or urgency. Urgency is my middle name! Sometimes Mark and I joke that my favorite word is "now". And not in the meditative sense. In the sense that I want what I want when I want it. A terrible quality! and I am always rushing. On Friday I took a 7:30am yoga class but was a few minutes late. What could have held me up? Nothing -- it's just a habit. So I am starting to look at that.

The other thing she talked about was the importance of daily practice. She suggested that we sit every day -- regardless. And the best approach is to do it first thing in the morning -- not after doing email and drinking coffee -- which is exactly what I do. She said the only thing to do before sitting is to pee -- and only if necessary. So I did it that way this morning and will try it for a while. I often have this sense during the day of the to-do list. Sit, yoga, practice piano, exercise... etc etc etc.

She closed with prayers for the people of the Philippines. 

Scans!

Today I had scans at the Dana Farber, but won't meet with The Vixen for results until Wednesday. Usually it happens in the same day, but for some reason she is not seeing patients in the afternoons. Since it takes 3+ hours to get everything done, there is not enough time to see her during her morning session. She has had several promotions since we started in 2008 so maybe her patient time is cut back? I will ask her about that when we meet. But I feel totally fine so am not at all worried about the findings. In fact I saw my PCP a few weeks ago and she commented several times about my glowing health. (I also brought her some organic apples from Lucy's trees so maybe that had an influence on her kind words. Ha ha.)  She mailed me the results and my "bad" cholesterol has dropped since last time. And she says that my BMI is optimal. So it's all good!

At the encaustics conference in Santa Fe, one of the hands-on workshops was jewelry making! I made an awesome necklace using 2 panes of 1" glass with copper foil tape and solder. I am very enthusiastic about this and am order materials today. I am rather clumsy with fine motor tasks so this will be a challenge but it was so fun and unusual that I'm hooked. So you may see these pendants in the December gift-a-day program!

I am very happy at work these days. I switched to the psych integration team on November 1, so now do all mental health work. No more case management -- or managing anyone else! My schedule is still 3 days/week which gives time for my fledgling private practice and all the other things I love to do.

Mark started taking piano lessons recently so I have picked up practicing again -- after a 40 year hiatus. I'm not taking lessons -- yes -- but am catching up where I left off as an early teen. I had this mistaken idea that playing music was dead. It has been super pleasurable and I always find time for it, even on an already over-committed day. Mark is making great progress and is interested in the music theory as well. So he is teaching me!