Off to Saint John tomorrow AM early

I’m so happy to say that my blood work this week looked great. I’ll be back in touch late next week. Yea!
I figured the bald girl emoji was the right one for me today.

I love to make practical lists – mostly to do lists, but also lists of things to pack for a beach trip or how to put up the complicated big tent. From very early on in this healing process I started asking people who had cancer for their top tips – this is the list they and I have built.  Feel free to save and share with those who might benefit.  Presented as if a series of magazine headlines in “Healing Today” magazine.
  • Put your Chemo Schedule Into Your Calendar.  Record it as x-y (x is round and y is day in the cycle).  Use that area of your calendar to record notes on what day lets say 9 feels like – you’ll catch patterns that will be helpful. You’ll know not to schedule something on a day when you know you won’t feel good, and you will know what day to expect a chemo session, though its not on the calendar yet.
  • Build Community.  Know who your good angels are and call on them for the special meal you want to eat or a visit when you are so tired.
  • Use a bite guard.  If you are biting the inside of your mouth when it has sores in it, use a bite guard.
  • Don’t cut your nails too short. They may stop growing and even get a bit worn away.
  • Best of:
  • Eyebrow pencil –
  • Chemo caps –  I like the snood style more than thecap style.  Oh and satin pillowcases are helpful when you sleep with a cap.  I find my cap keeps falling off as I sleep on cotton.
  • Vomit bags – Fits in your purse you won’t even know its there
  • Purse sized, odor free, hand sanitizer –
  • Foaming sanitizer (use wet or dry)
  • Put a fast, easy to read thermometer in many rooms of your house.
  • (If it fits) A Spiritual Reading Per Day Prayers for Healing is a good choice.
  • Prevent Thrush.  Use a solution of warm water, salt and baking soda to rinse at least 2x a day.
  • Food.  Know that if you get nauseous when you get chemo the foods you choose to eat may never be appealing afterward.  Be strategic.
  • Don’t let Constipation Win.  Don’t be more miserable than you need to be.  Senocot. Miralax, prunes, and more are helpful.  And this is great:
  • Don’t let Diarrhea Win.  Probiotics are helpful.
  • Healing takes more time each day than you might imagine.  Yes, there are only 2 chemo treatments each round, but in addition there are shots, blood draws, visits to the doc.  emergency visits to the doc, days when you are tired and more.  Some nights I sleep more than 10 hours. Some nights I can’t sleep much and am useless the next day.
  • Prayer: Its snowy and cold outside. This isn’t a beautiful snow to my eye. Its gray out and I’m worried about the trees and bushes that were blooming and are now covered in ice. It is the sort of day when its easy to feel out of whack – Spring in February, winter in March. Lists keep Alexa grounded and she likes to share learning. The harder won the learning the more she wants to share it. Grounding – Blessed be.

Round 4 second infusion

The second infusion of my 4th round of chemo is done. My last blood work showed my platelets again up, and I was a bit worried I’d be admitted to the hotel but no. Dr. Bicher was fine with me going ahead so the major part of round 4 is over.
I thought you might want to see me at the infusion center. Explanation moving from top to bottom. Hat and scarf – you get that. Beads a friend was handed by a stranger at the rally and my friend handed on to me. You could say they are my rosary, they are on or near for each infusion. Tubing coming out of port under my shirt. That is where the infusion comes into me in 4 or 5 steps. One fluid to reduce nausea, one to reduce reflux, saline, 2 chemo infusions and then hepron at the end to prevent my port from blocking. On my right wrist Black Lives Matter bracelet (going on 2 years of my wearing that), and on my left the white temporary medical bracelet has a bar code that they click for each drug to make sure it is going to the right person. Over me my favorite home made quilt with a sun flair in the middle and different colors in each quadrant. Flowered beanbag to block the light, glasses to read. Cell phone and earphones and chapstick off camera. That about does it.
Thank you Gd for modern technology and the resources to use it. Time, money, expertise of the staff, including the programmers who write the code to ensure I get the right drug, the pharmacists (in some back corner of the building, but never seen) who make up my infusions exactly to my weight that day, for the reminder of social justice on my wrist, for the blessing of the lady who gave out mardi gras beads at the rally, and more. And Ken by my side, off camera. Blessed be.

Starting round 4

I’m past the midpoint on planned chemo treatments. Six planned, 3 down. The doctor doesn’t plan to make up the partial session I got on round 2. During the appointment she was obviously pleased with how things are going and she also commented on how few side effects I am having from the chemo. Fatigue and hair loss, but no nausea, throwing up, pain in bones, pain in feet, difficulty sleeping etc.
Constant presence: My prayer today is “Le chaim”. To life. Blessed be.

Speak the Language of Healing book – again

All 4 authors of “Speak the Language of Healing” write to the question “How can I find peace of mind when I’m living my life over the edge?” The Jewish author talks about learning about a sisterhood of breast cancer survivors that she found herself a member of. Toward the end of her 7 chemo treatments she talks about her experience of being “over the edge” this way (edited a bit):
“I thought I would emerge from this whole and into something specific. I would be more advanced spiritually. Or my writing would be more profound. Or I would have some guarantee that the cancer will never come back. Something tangible I could put my hands on. I know now that I’m emerging whole and into emptiness. I don’t know what the future will bring.”
The Sufi talks about how she has gained peace by no longer denying that she would die. She points out we all will die and that cancer may force that realization on some of us more than others, but it is equally true for all of us. She then says that “we all live over the edge, and it is counter intuitive to imagine that peace can come out of living in awareness of that reality”. But she finds it true.  She talks about Cancer giving her an awakening in a mystical sense.
The 12 stepper writes “I tried to view illness as not a catastrophe, but as possibility. All I can say is sometimes it worked”
I’m a bit fearful of heights. Not normal heights, but the Grand Canyon and church towers. When we visited the Grand Canyon about 10 years ago somehow we got walking on the Bright Angel Point path at twilight. That path starts wide and on land and then becomes a sort of air peninsula narrowing down to a positively scrawny path. It was paved casually, with low guard walls, and sheer drops. I was wearing city sandals. I looked down, and what I saw was seductively beautiful and so scary. Free flight or fee fall both felt in reach. Both felt inevitable.
Next week starts round 4 of chemo.
Dearest source of light. As Alexa crosses the half way point on chemo treatments give her wisdom to live life over the edge. Fly and fall we will all journey down a path that is too narrow and steep for comfort, surrounded by love and family. Bats may brush our heads and ultimately we are on our own as we move forward. Blessed be.

Cold=> antibiotics => stomach ache => probiotics =

Nothing major, just resting for a few days.   The great news is that my platelets are fully in the normal range.  So platelet levels (and why they were headed up when down is normal?) are no longer a concern.
The last few weeks I’ve been reading ministry related books about stewardship, financial generosity, and giving, particularly, though not exclusively, in a church context.  Good stuff.
Yet the points that are resonating with me today are Mark Ewert’s ideas about receiving generosity.  One of his points is that it is important spiritually to develop both an ethic of giving and gracious receiving.  I recall a meeting I attended somewhere and the question was asked “do you find it easier to give or receive, or are they about equally easy/hard?”  Almost everyone preferred to give, which is obviously an untenable and honestly kind of sad imbalance.
Mark frames it this way. “Receiving precedes giving, whether in the realm of our personal history as a defenseless baby; our cultural history, as many before us created the context in which we live; [or] our scientific history.”
As Americans self reliance and independence are drilled into us.  Many of us are also Unitarian Universalists with all the expectations of self sufficiency that holds.  Self Reliance is the title of one of Ralph Waldo Emerson’s books, though he certainly meant something different than what most of us might mean when using the term.
When did you last accept an offer of help?  When did you last ask for help from someone other than your closest family?  What could you use help with?  Maybe it’s time to ask? You’d be giving that potential giver the joy of gifting you your request. I’m getting better at asking for help. I recall when my dear friend Naomi was dying asking her about what she had learned – her answer was two fold, but one part was about asking for help. We don’t actually have to be ill to ask for help do we? I recently did a big ask and feel great about it.  I got a yes, but believe I’d feel good just having asked, not that it was easy at the time.  Not easy at all.
MaaBaap, let us all be gracious givers and receivers.  As parents give endlessly to their children, we know they also delight in the receipt of gifts from their children.  Let us delight in children who gift us a dandelion on a walk, strangers who complement us on a hat, friends who bring a meal or help clean out the basement. Let us ask for what we not only need but what we want. Let us graciously receive.