Finally, an answer, of sorts.

Not a great answer but at least we know. The fluid collected from Nora’s spinal tap (sorry for the typo last time) showed that Nora has cancer cells in the spinal fluid. There is no “mass,” (tumor) so that’s good. But the cancer caused Nora’s meninges (pardon my anatomy – a system of membranes that envelope the central nervous system) to swell, causing her headaches, back pain and tremors.

She is still in the hospital (Savannah, St. Joseph Candler, Room 416) so Dr. Yannucci (Nora’s wonderful oncologist) can figure out what drugs work for pain management. Nora had a chemo treatment Friday in her back to attempt to kill the cells in the spinal fluid. (She’ll be having them every two weeks.) She still can’t see all that well (so she can’t play her computer games, a real gamer frustration …. who knew?), but she’s walking (sort of), being stubborn, funny, and loves my homemade (from scratch) chocolate chip and peanut butter cookies.

Based on the number of Nora’s friends who visit this site, we had a very small representation of her fans this weekend: Jaine (sister), Dustin (son), Michelle (hangs with Dustin), Sarah (daughter), Jeremy (hangs with Sarah), me. Nora loved it. Saturday Dr. Yannucci’s medical partner, Dr. Negrea, came by on rounds and was truly impressed by Nora’s fan club (the room isn’t that big).

When Dr. Yannucci is convinced the pain management is under control, she’ll release Nora from the hospital. We’re arranging palliative care for Nora when she gets home. O.K. What is palliative care you might ask? Here’s a pretty good definition: palliative care “focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.” We’ll be using the services of Lowcountry Hospice (a non-profit, volunteer-based organization) which is an example of what goes around … I served on their board of directors when we approved funding the palliative care initiative . Who knew?

It has been a long week. Thank you for what you’ve done for us.

Paul

WHERE IS SHE?

Her dog sleeps on floor
stretched bedside

though no one is there
he doesn’t know he sleeps

waiting sleeping wonder
ing where is she?

Finally.

After weeks of headache, nausea, extreme pain, Nora had a check up with Dr. Yannucci, her oncologist. When Nora arrived in a wheelchair (she had a spinal tip yesterday morning at Hilton Head Hospital) and had a tough time just sitting up, Dr. Yannucci immediately took action. She admitted Nora to St. Joseph Candler hospital in Savannah yesterday afternoon for observation, more tests and pain management. Daughter Sarah took the day off and was an immense help to us.

Deloss Point

As I write this I am awaiting a call from Dr. Yannucci’s office to bring me up to speed. Spent the night on The Ridge rather than standing around and getting in the way of the nurses. (I rather quickly – for me – picked up on the “getting in the way” business when the nurses said “excuse me” about a dozen times.)

It was a long Labor Day weekend. Son Aaron came up from Orlando and was a big help. Sarah and Jeremy also came out to The Ridge to help, too. We were, therefore, officially a kennel. To me, anything over three dogs (we had four) makes your place a kennel. All four, of course, spent a good deal of time napping (at the same time) in Nora’s bedroom.

It’s good Nora is in the hospital. They can do something about the pain. And, of course, it’s not good.

I’ll keep you posted. You keep praying and thinking of Nora.

Paul

The Headache that won’t go away

We spent yesterday (Saturday) afternoon and evening in the ER at Hilton Head Hospital. Was there an emergency? When Nora says she’d rather be in chemo than having this persistent headache, it’s an emergency. Nora’s PA passed on all the tests and current information about her condition which is, simply put, intense back pain (at the tail bone) and even more intense headache.

The ER visit did help determine the cause of the back pain. An MRI was done of her back. It showed Nora has two herniated (“slipped”) disks in her lower back (and, thank God, nothing else). Treatment: steroids. We’ll see.

She was also dehydrated (this from “Ms. Aqua, 2013” – 64 oz. water daily) and had low potassium levels. Part of that is because she hasn’t eaten much of anything in three days (today she did have yogurt [2] and glazed donuts [2] – a rare find in Ridgeland – who knew?).

Her neurologist did give her a stronger dose of meds for the pain, but nothing is cutting it.  (Neurologist’s nurse on the phone: “How long had Nora been in a wheel chair when we saw her?” My reply: “15 minutes.” That was the first time she needed that kind of assistance to get to a doc’s office.)

Tybee (back row) and Bob, the Centurions.

Nora is frustrated. She wants to get on with the radiation therapy but we can’t do anything until this is solved. She can’t walk unaided. She (and I) hates this. The dogs (Tybee and Bob) continue to wait and watch, protecting their beloved.

Will be meeting with two docs this week (a new one and the neurologist). Please keep sending love.

Paul

Blue Moon Storm

Clear night sky plus blue moon
made daylight above my
bedroom window while below
on night’s horizon, a brilliant
row of black clouds spit lightning
at our young pine forest.

She cannot be here. She is
in the next room. Pill bottles
line the dresser. Lightning bolts
rattle her window and sleep.

If it isn’t one thing …

MRI was clean, but Nora’s headaches are debilitating. Her PA arranged an appointment with a neurologist today in Beaufort, a headache specialist. Had to wheel her in. Pain was/is intense. She cannot walk unaided.

Doc said the “tremors” were actually muscle spasms and the extreme headache (which begins at the back of her thighs, moves up her spine, gets to her shoulder blades, then it feels like the top of her head is going to explode) may be caused by ultra-extreme tension. She now has pain pills, muscle relaxant pills, sleeping pills and a walker. Nora hates pills.

In one respect, this new development  causes life on The Ridge to be, sort of, put on hold. Nora’s sister Kathryn spent a few days with us this week and was a great help. The flower garden on the creek side of the house has expanded and promises to kick next spring into high gear. This fall we plan to celebrate with a Margareta when Nora’s limes (tree compliments of “Florida son” Aaron) when they ripen.

High tide now. Boyd Creek never loses it’s beauty or peace (until our neighbor’s dog and Tybee start arguing with each other).

Keep those cards and letters and texts coming. A long day. The adventure continues.

THE FULLNESS OF AUGUST
High weeds on these country road crossings are
dangerous. Can’t see a damn thing either way.
 Cardinal flower,  spider lily groundnut, water hemlock
seashore mallow,  pickerelweed, queen
anne’s lace who the hell knows not me botanically
ignorant and clueless about so many other things.

But August, Augustus, is an emperor month so I will
play emperor and mow down the offending botanicals..

Paul

Dear family and friends,

Nora had her post op meeting with her surgeon, Dr. Herrmann a few days ago. Biopsy report showed
no cancer. Everything looked great. With the type of cancer (triple negative – TNBC) Nora was diagnosed with, the news that she responded so well to the five months of chemotherapy is, to simplify Dr. Herrmann’s reaction, “fantastic.”

But about two weeks prior to the end of Nora’s chemo and before surgery, she started getting severe headaches, the kind that produces tremors. She thought they would just go away. They haven’t.

She will get an MRI scan Monday and see where we go.

Nora’s sister, Diane, kindly came down from Asheville for a visit and to help around the house. (Note to Diane: the chicken salad is gone!). Sister Kathryn is next.

Please keep those good vibrations and prayers coming to The Ridge.

Paul

Neighbor’s dock. Photo by K. C. Gravely

Dear family and friends,

I know that every day, every hour, very strong and brave women go through what Nora did today. I can do nothing but sit back in awe. Joking with our surgeon and anesthesiologist just prior to the operation

   (Nora: You think you’re going need a stool to reach me?
    Surgeon: [who is not tall] You know these tables go down, too.)

might be placed in a special category. You decide on the category.

5:50 a.m. We arrived at the hospital a bit early. Daughter Sarah and beau Jeremy were kind enough to let us use their place on Hilton Head last evening (they came out to the Ridge to take care of the dogs). Everything was so efficient, so nice, so … nothing prepares you, nothing. It is one minute, one hour at a time. Clock checking. Too often. We have brought a change of clothes. We are scheduled to stay overnight at the hospital. (Nora does not like the schedule.)

7:30 a.m. Nora is under. Dr. Herrmann is doing her magic. (Of course it is not magic, it is extraordinary skill, a tremendous team effort, decades of knowledge and training, a special gift …nonetheless, to me, magic.)

9:30 a.m. Patsy, recovery room nurse (our friend and Aaron’s Godmother), notifies me Nora is coming out of it and I am to meet with Dr. Herrmann. I find out (in a small room off the family waiting area) that all went well. More this and that. I’ll get a copy of the pathology report, etc. She tells me (I have heard this since yesterday) Nora wants to go home. No overnight stay. Dr. Herrmann smiles (it’s a hellova smile) and says “Probably.”

10:45. I am with Nora. She’s in pain. Patsy shoots her up with some good stuff and the pain dwindles. Dr. Herrmann has said that if Nora continues to respond well, she can be discharged. Dr. Herrmann believes in “quality of life.” I used to use that phrase in ad copy. I am embarrassed. I do not know squat.

12:30 Pain, other meds called in to Main Street Pharmacy in Ridgeland. Better living through chemistry.

Very happy “mama”
is home

1:16 p.m. We are in the car, headed back to the Ridge. Same day surgery (or as our friend Walter Palmer – who, with wife Karen — were to cover tonight on the Ridge – calls it “drive by surgery”), and we’re home. Nora is elated, if groggy. Sarah will spend the night and will learn what the home health care nurse has to tell us tomorrow.

Nora did well. “Same day surgery” for a mastectomy. Incredible woman.

Oh, yes. Hair growing. I say it’s blonde. She says gray.

Thank you all. Radiation begins in about 6 weeks.

Paul

Storm coming over Boyd Creek

Dear family and friends,

Except for five weeks of  late afternoon and early evening thunderstorms, with beautiful lightning shows followed by self-congratulating thunder (nature’s version of a standing ovation), it has been quiet on The Ridge. Nora’s appetite improves along with my cooking. It’s still somewhat of a guessing game, but as the effects of the chemo recede, it’s better. But I know there is no normal.

One of the many features of our “new” home (we will have been here a year in August … impossible) is the fireplace. Nora could do without a kitchen, possibly a bedroom, but not a fireplace. Our young neighbors (the only ones within shouting — or barking — distance) had five pretty massive hickories cut down last week and, through their kindness, we won’t have to worry about firewood this winter.

Our conversations tend to be about what we need for after the July 29 surgery. Pillows, sheets for guests/helpers, loose clothing, changing bandages, the “surgical arm.” Nora’s experience as a home health aide for ten years have prepared her for what is to come. Though not me. I read, I watch, I listen. None of that matters. This is not “the new normal.” This is very different, believe me.

AT THE TOP OF MY VOICE
oh there is rage why
select a beloved
for such an ordeal where
is fairness how do others
not break bonds with God why
such random selection?

enlightenment evades me
I learn to trust only the beloved
pax vobiscum

 Your cards and notes and emails and comments mean so much to Nora. Thank you. Nora says she’s “excited” about the surgery. Figures.

Paul

Update, July 11, 2013

As the side effects of the chemo slowly recede and Nora’s hair slowly returns, today is something of a relieved sigh. Yesterday (Wednesday) we met with Nora’s wonderful surgeon, Dr. Herrmann. “We” included our daughter, Sarah. Dr. Herrmann scheduled a mastectomy for July 29 at Hilton Head Hospital. From the first, Nora has responded to Dr. Herrmann. Our meetings with her have been emotional for Nora. Herrmann returns the emotion. Hell of a bedside manner. “You’re extended family,” Herrmann says. Herrmann is not tall. Nora is. But they hug. I get emotional too, but I am good hiding it, or so I think.

Surgeons have a bad rep: god-like, life-giving, steady-handed, arrogant SOB saviors. I know two surgeons, Herrmann, the hugger (so much more than that to Nora), and a guy who is the epitome of kindness, generosity and understanding. Also something of a genius, though limited . I have yet to meet the arrogant SOB surgeon. Maybe I am blessed.

Today we visited the chemo suite in Savannah to check Nora’s blood. Numbers were appreciably up from last week so another infusion is unlikely. One of the nurses teased Nora and said, “You’re just showing off.” Chemo humor.

I mowed our lawn Wednesday, a four hour chore. It is not really a chore, I like it. I get a beer at half time. Nora said my dad would be proud. (My dad was a lawn connoisseur. We had a hardware [feed, and hatchery] store back in Kankakee, Illinois. Dad had the best grass in the neighborhood.) He would be proud. But he would have comments.

The only reason I bring up the lawn is because of the treasures Nora found. We rent this creek home on The Ridge. Rental homes always have artifacts, a slip of paper, an ill repaired window, a light bulb that needs replacement. Nora found these four glass stones in the creek-side yard. Unlike Chekov, here are four sisters (based on color, Nora is second from left). Notice the sparkle, the hue, the sense of togetherness, yet each stands out. Bright. Bright. Do they know? Of course. I (along with my brothers-in-law) have always been slightly awed (and frightened) by these four gems.

QUESTION

The banana tree
outside my window
fears frost she
fears it will not
produce bananas.

Who is right?

Paul

July 4, 2013, twilight. Nora is attempting to sleep. While this round of chemo (the last we hope) is over, Taxol is a drug that just keeps on giving. This afternoon she got her hands dirty in the flower garden and enjoyed (while sitting) watching me spade up a few clumps of dirt, sweat pouring off me, to prepare a flower bed. The pain in her joints and muscles is supposed to go away soon. And I’m supposed to get in shape.

Across Boyd Creek there are some fireworks over the water. One long dock stretches out forever to the deep water and is lighted. A beautiful display of light, without explosions. With all the whooshes and pops there are no night birds. Our evening egret is in hiding. So are the dogs (3), under Nora’s bed.

We have the pleasure of our son, Aaron and his dog, Buddy, as guests this week, up from Aaron’s work in Orlando. He calls “The Ridge” home. That moves Nora. And me. Daughter Sarah, beau Jeremy, and spoiled (beautiful) dog Indy, are due this weekend. Full house, big breakfast, maybe some golf (9 holes).

Nora has finally broken down and is taking some Advil(!) for the pain. She can have stronger stuff but she hates to be under the spell of pills (though I very gently remind her about the stronger stuff).

Our June fund raiser, with the 50% added to each dollar incentive, was a big success. Thank you, everyone.

Today was a double holiday. This is the first time in five months we did not have to go to Savannah on Thursday. We learn more next week…surgery, radiation. Keep sending that positive energy, the prayers, the thoughts and notes, in whatever media.

I don’t necessarily like poetry, I just happen to write it. My first (and greatest mentor – in poetry) was Raymond Roseliep. If he had fame, it was his brilliant haikus. I was too stupid at the time to really appreciate what and who he was. And what he gave me, gave us all. Ray and I give this to Nora (and you):

“And I cut stars from sunlight
for your dream
and my night.”

— Raymond Roseliep, A Beautiful Woman

Paul

STOP IT.

My body has been invaded
twice by strangers who do not
belong. One would end me.
One would save me
for a miraculous moment I
do not yet know about.

— Lewis Cancer Center, June 27, 2013

The chemo, for this phase, is over. Surgery or radiation is next. We do not know yet. As it seems with all cancer, all depends on tests.

Nora’s friend, Regina, was there on the spot. What a truly lovely lady, with her cookies, with her cleverness, charm, silliness. She promises to come to The Ridge. Nora is eager for that, for anything but another trip to Savannah (which we will do in two weeks for a blood infusion).

Except for the people she’s met there. It is an unimaginable environment for those of us who contend with only the drivel of our days. Bills, school, crabgrass, cars needing fixing, an appointment missed (so sorry, I was in chemo), misplaced keys, disappointing sports scores. Except for the chemo, it is all nothing.

Nora has been exhausted. Short of breath. But her hair (slowly) grows back. Today’s joke was “Which side should I part it on?” It went over well. Have the nurses heard this before? They laugh. They are so very kind.

We’ll find out what’s next based on some more tests. It seems it is always more. Which I guess is good.

Nora got to ring “the bell” but as usual she shied away from the camera. However, if you look closely, you can see the fuzz on her head and that “I dare you” stare I know so well. Fortunately, the target is the cancer, not me.

Thank you, all of you.

Paul

P.S. All of you have been so gracious, so kind, so generous. Please spread Nora’s message to friends. Our “matching gift” ($1 = $1.50 for those new to this) ends June 30^th.