Please find a sacred moment and just say my name quietly out loud. If you can, if you find sacredness, and if you remember.

I want to tell a story about my friend Cindy and how she knew I really wanted to go to the rally and how I don’t feel I can do that physically. She came over yesterday with her wife Olivia and asked me if I had a little stone I “sort of loved”. Odd request but she let me know she was willing to carry the stone down to the rally and bring it back for me, blessed by what I hope will be a close to a million ralliers lovers of liberty, people focused on kindness and working for peace. She acknowledged that life being life it might not return. I gave her a small white slightly flat very smooth stone and am willing to have it live on the mall if it falls out of her pocket.

Let me tell you of the story of that stone. Over 20 years ago someone suggested I read a book about a white woman who goes on a walkabout with aboriginal people in Australia. Can’t remember the title but someone else may as it was popular in the 1990s. The aboriginals suggested their guest find a stone and put it in her mouth as it would generate moisture, saliva in her mouth. As I gave the stone to Cindy I thought about the dry time to come, indeed the dry time we are in. Yes, my constant thirst for water. But more to the point our faith’s thirst for justice. The thirst for positive change felt by those who share values, and to use one of my favorite words – the simple thirst for kindness and dignity I hope all in our country feel. My little rock in Cindy’s pocket trying to fill so many people’s thirst for deep important things. Thank you Cindy.

Oh and first chemo of round 2 was today and I feel very good. I’ll keep on top of any creeping nausia and that very dry mouth chemo gives me.

The prayer that comes to mind today is by Rev. Rebecca Parker former president at Starr King (the seminary I attend). I don’t need any more theology in my life than this. At Starr King is is often sung as a round – can you hear the voices singing in prayer?

There is a love

Holding me.

There is a love

Holding you.

There is a love

Holding all.

I rest

in this love.

I went to the doctor today – prior to starting round 2 of chemo tomorrow. She was pleased with how I’m doing and answered all our questions. Yes, its true that there is no test for this type of cancer so you really don’t know how you are doing other than physical exams and the occasional CT scan. That said, I seem to be doing very well. The answers I gave to all her questions were what she was hoping for. My physical showed good healing from surgery and nothing bad. I tolerated round 1 of the chemo well, and she thinks that is about how I’ll react to all the rounds (6 in all). She said I can resume yoga. She spoke about several patients of hers who have crossed the 9 year mark with this disease and she had mentioned earlier someone who lived for 15 years. In short I found it to be a hopeful visit and actually quite pleasant as I like her a lot.

Dear spirit of light and hope – I pray for replenishment for Alexa’s leaking vessel of hope. Sometimes hope evaporates, or leaks away. Let her know deeply that it can equally be filled by a good doctor’s visit, the hug of a stranger in the infusion room or the blessing of the community we bring to her.

Yesterday was Nathan’s 17th and his first day back at school. He came back from his full day with enough energy to use the elliptical trainer vigorously for 45 minutes. He’s been told and I’m sure its true that fitness is one of the best preventatives for MS flairs. He’s taking it seriously. The Calculus tutor and Spanish Tutor are in full swing and he’s created an initial schedule with all his teachers to wrap up last term’s work. And he won’t share that with me, which is just fine. This is between school and him – I’ve got no problem with that. What could be a better birth day (the day of his birth, the day I became a mother) present for ME than all that?

And yesterday I got the go ahead for our trip to the Carribean. Feb 1-5 Ken and me on a beautiful island I love dearly, in a resort I’ve never stayed in. Just enough of the old and the new to make it perfect. The doctor said she’d give me a few extra shots of the medicine that makes my white blood cells come back more quickly to prevent infection while in the airplane. Deal.

Today it was beautiful out and Ken and I took a walk in lovely sunny air after my weekly Wed. AM blood draw. A walk outside in Jan, with coats flapping, no gloves no hat, just sun and freshness.

Then I did some errands and actually a bit of recreational sewing.

I’m doing great and from about 5 on I’m pretty tired. But I’m seizing those mornings and day times. Lunch with a friend, a call with another, or teatime. I savor all of them and welcome them as I can.

Next chemo round starts Friday.

Creator of goodness – let Alexa and all of us seize the days, the moments even the breaths that are filled with beauty and light and that sustain us through the mundane and painful. Let us remember to hold onto those moments of awe and glory. They are a gift.

I love massages. I like my massages to be a chocolate brownie with chocolate chips. I want it deep, I want it to hurt in the way that makes me feel better for days. I want to groan with pleasure and a bit of distress. I’m good with the therapist using an elbow, full pressure please. I scheduled a Chemo massage. The therapist comes wonderfully recommended, I checked with my doctor’s office and my platelets are in a good range, I’m not going to bruise. I told her that and she said “I was taught that chemo massage needed to be…” Actually I’m not sure of her words but the answer was basically “like it needs to be not like you want it to be”. So I tried and it was nice. It was angel food cake. Light airy, a brief scent of strawberry, maybe even a sliver of strawberry, but a million miles from a rich deep brownie. A million miles. And I liked her and will see her again and will try to remain open to the experience she offers.

Chatting with the therapist afterward she said “this is the new normal”. I bristled, who is anyone to define my new normal but me? No I’m an energetic person who gets things done and loves to do a lot. I’m working to become a minister, and going through that process with all I have. I’m currently a person with treatments and a disease that make me tired and sometimes I feel ill. I’m currently not doing much toward ministry. Maybe this will last I hope not, but this is TODAY not “my new normal”. Ken also used this expression and I also took him to task for it. After a pause he let me know it was for his ease, and that he hadn’t thought through what it might sound like to me. His new normal may be driving me everywhere, being so incredibly helpful, wonderful loving always present and caring. And I deeply appreciate those blessed offerings, but to me that is all today, not a new normal.

I have not received permission from the Doc. to take the trip to Saint Thomas that Ken and I just booked. We got cancellation insurance, and I think the nurse was hinting that the doc. might not let me go. And I may go anyway. We need this trip to the sun and blue waters. We need this trip to where I spent most of my spring breaks through my childhood. There is a color of water in this part of the world I haven’t found anywhere else and I need it, It will heal me in some important way, even if it isn’t a medical way. And Ken has never been there, so it will be very special to sea that see with him.

Dear Creative force – Sick people need hope. It is hard to hold onto hope in the mists of sickness and medical treatments and really sad news. And defining sickness as for today is important for hope. Please grant Alexa, Ken and Nathan hope, even if it is just in vistas of blue unseen for years. A special color of blue.

We had a terrific meeting with the principal, Dean of Academics and nurse at Sidwell and they have crafted a plan that Ken and I believe will really set Nathan back on a path to success academically. It is a mix of dropping classes, summer school, some tutoring to catch up those 24 days of missed school, some rest periods with the nurse (as needed). It is realistic, and challenging. They were incredibly respectful of him as a hard working high achieving student, and also fully cognizant of their responsibilities to him moving forward. They reassured him that if a college didn’t see adjustments to a schedule after what he’s been through it would raise more questions than adjustments with excellent performance in the remaining courses. Anyway, we started with meaningful Quaker spirit filled silence and ended the same way. One of Nathan’s teachers wrote him simply the most beautiful and supportive email I’ve ever seen. It was about the poignancy of travel back to a sense of well-being after hospitalization, and his and my diagnosis. Here is just one line “With your illness and now your mom’s illness, you have been unfairly forced to feel the urgency of time in a way many others don’t have to so early in life, (even though, numb though the rest of us may be, we all must face it sooner or later.)” It ends with hope and support both from the teacher and the other students. Got to, got to love that.

Some of you know that I went to Sidwell and it wasn’t a great fit socially for me. I wasn’t eager for Nathan to go there, but I feel he made the right choice, that they uphold the whole person, including the divine within, and I’m very happy about how it is going.

I’m on day 12 of my healing program. The second administration of Chemo is indeed stronger than the first in this round, but okay – all is okay. My insurance for medications has resolved and I’ve met my deductible for the year. (yes 9 days into the year).

The basis for the prayer for today is the email quoted above.

Dear supportive energy – please hold Alexa, Nathan and Ken’s hands as they journey back to a sense of deep well-being through the almost impossible uncertainties of this trip. Hold them with light, hope, community, excellent medical care, supportive insurance and other aids to wellness. Let them feel the light as challenges continue to come and hold onto wisdom as provided by this voyage.

This week we’ve had preliminary discussions with Nathan’s school and are well on our way to developing a plan for his return to school. Since exams at Sidwell (SFS for the cognoscenti) are after winter break his first day of school will be Jan 17 – the day he turns 17. In the meantime he’s working to make up classwork, getting Calculus tutoring (going very well, actually tutored by a Quaker who I knew slightly who taught math for 40 years in the Montgomery Md. County school system). The life is back in his eyes and and the bounce is in his step. He is now out with a friend taking a walk in bitter cold as he wants to chat with her privately. We had a total of 4 doc visits this week for him, and all came out “tip top” as Nathan has taken to saying. No more checkups or other visits for 3 months. Yea!

This week I got a few shots to boost my white cell blood count and got my port installed. The port is amazing, I was so worried and it is fine. Imagine a modern plastic soda bottle cap, imagine it with a soft squishy top (like a pin cushion) and a few thin hoses going out. The bottle cap goes under my skin on right chest, the hoses go in veins to my heart, and they just poke through my skin into the squishy surface to give the magic infusions that are making me well. Four hour appointment today and no pain or IV challenges. As I’ve been saying the port is going to be my friend. The device (saw it before insertion) is even purple, my favorite color.

The part that has been more challenging this week is insurance reimbursements. Somehow I’m the only person in the Blue Cross system who experienced a new year on Jan. 1. I thought that was standard, but oh no, all my drug approvals were revoked Jan 1, and had to be put back in place. And one of Nathan’s (the most important) had been rejected retrospectively and also moving forward. His doctor has confidence it will be reinstated since it was the only thing that worked… This part of this process is really hard for me. I try to get on top of it plans then they dissolved. My inner manager wants to let them LEARN how to do this RIGHT. That “how do you run a program properly” sense of dealing with the public was honed through close to 30 years of working on surveys and data collections where you need to train and retrain those who come in contact with respondents. And my turning into a management consultant at the same time I’m a patient is not helpful in these moments. At one point I was told that my chemo for today was cancelled because no drugs were approved and i really lost it. Resolution, advocate for myself forget the management consulting sideline. The chemo did happen.

We continue to appreciate cards and continue to be self sufficient on rides, food etc. Thanks so much for your continued well wishes and loving concern. Thanks particularly to Meredith who set up my healing calendar and Colleen who keeps coming up with creative ways to deal with these insurance issues.

Prayer, Let me be grateful for and gentile with the good people at the insurance companies, doctor’s offices, infusion center, and hospitals who all are doing their best for Nathan and my care. It sucks to be in this situation but I pray to bring my best self to these interactions and find grace in the hard moments to come. Please pray with me and for me to these ends.