Delosse Point, 9/30/2012

It has been four days. I am learning. Wanda Williams came down from the Isle of Palms to talk to Nora about the recent 1968 T.C. Roberson class reunion (yes, Wanda knows college basketball). Nora listened but was not able to respond at the time. Later today she acknowledged Wanda’s visit and how much it mean to her. Thank you, Wanda.

First visitor today was Debie Malool, a nurse with LC Hospice, a friend and mother of one of Aaron’s very best friends (and our “third son,” Guy). What a pleasure.

I have a monitor set up so I can keep an eye and ear on Nora wherever I am in the house or outside, walking the dogs.  I guess that takes me to the upper reaches of geekdom. So be it.

Son Aaron is here for the week to help out. Pat, our hospice CNA, will come in every day to bathe Nora, get her comfortable, change sheets, all the stuff that needs to be done. I help a little – where brawn, do not laugh, is needed, not brains.

Maybe the greatest event that happens frequently each day is when I ask Nora if she would like more water and she almost chuckles, her response to my bullying. It’s a great smile.

Nora is at a plateau. The drugs have obviously decreased the swelling against the brain, which means less pain. She graduated to two pain patches on her arm (a promotion from Sergeant to Master Sergeant?) and allows me to clumsily give her her pills.

We wait and see. Neighbors Wayne, Melanie, Walter and Karen continue to be a massive help. Thank you all for the cards, flowers, emails, texts, contributions. Nora knows about all of it. I am sure she is doing a metaphysical cheer.

This was really the “first day” of “normal” for the future for me. Since Friday it’s just been one learning experience after another. (All those who know how to empty a Foley bag, raise your hand. It’s actually pretty simple, thank goodness.) After Aaron leaves I’ll be having a home health aide come in 3 times a week so I can get some work done. This is all new to me.

A thank you to my business partners (and friends) for your understanding.

Thank you for your love. All of you. Spread it around.

Paul

I WISH

I wish
both your legs
were broken that you were bound to
a wheelchair that
you could barely speak
that you would be
well in 6 months
I wish I wish

Dear family and friends,

Nora was discharged today from the hospital. Beautiful Regina helped me pack all of Nora’s stuff.

She is home.

The ambulance (tough to fit her into a Rav4) pulled up at 11:30 a.m. Great friend Karen Palmer had already walked the dogs and helped the EMS folks and me get Nora comfortable in her new hospital bed I arranged in our Wii Room.

“Wii Room?” A few years ago, the kids got us a Wii (video game console). They also got us the Tiger Woods Masters CD. With the use of the controller (which acts like a golf club), Nora and I would play dozens of fantastic courses. (When chemo began 9 holes was enough.) The Wii Room became our play room. It is now Nora’s bedroom with a wonderful view of Boyd Creek.

Within hours of getting Nora situated a nurse from Hospice Care of the Low Country (non-profit) was there to help show me how/when to administer the drugs she needs to keep the pain at bay. They came as advertised: sensational. No need to go into detail but Nora is now comfortable. I’ll be adding daily day care beyond Hospice.

The plan is, if Nora gains enough strength, our oncologist, Dr. Yannucci, wants to give her more chemo in her spine. In the past 12 hours Nora has become more coherent and talkative than I have seen in weeks(?). Still doppy, but more Nora than not. If she improves, we go on palliative (home health) care program. If not, hospice care is in place.

Having Nora here makes me the happiest person in the world and maybe the most frightened. I’m in charge. And, at night, a solo act.

Nora will get the best care possible. With determination, she will get on with chemo. But no one knows. No one knows.

Nora got a precious shell delivered by friend Wayne Reeder tonight, a bit of Boyd Creek magic.

Know we live in a (neighborhood) world of kindness.

Paul

We’re working on getting Nora home.

My bride is one of the most amazing people I know. She’s back on the 4^th floor at St. Joseph’s. Meaning she is in the regular cancer ward. Her seizure could have been caused by the chemo, high blood pressure, or any number of things. When your body is compromised, it reacts in all sorts of ways.

I drive to Savannah from The Ridge every morning to be with her. The drive is a pleasure, not a hardship. I drive to see my lover. That same lover complains (with a smile) when I try to push a bottle of Ensure on her. That same lover curses me (with apologies, she is  Southern woman, born and raised) when I try to position her so she can eat breakfast, which doesn’t happen. Nora is not a breakfast person.

Dr. Yannucci (Nora’s oncologist)is trying to get a drug regimen set up so Nora can come home. We’ll be setting up either a palliative care (more procedures) or hospice care plan for her.

When awake, she teases the doctors, nurses and me. As I left today, I said, “See you tomorrow.” Her rather loud response was, “Not if I see you first.”

Paul

Something of a setback, but we hope only temporary.

I arrived on this past Friday morning on the 4th floor of St. Joseph’s Candler Hospital in Savannah expecting to find Nora. Empty room. She’d been transferred to the PCU – Progressive Care Unit. Earlier that morning, her blood pressure medicine was added to the med mix and her body reacted: she had a seizure. They were able to control it without electronic stimulus but it was thought best if she went to PCU for closer observation. PCU seems to have more stuff there for emergencies.

I spent all day yesterday and night with Nora. Aaron came this morning (seems like a week ago), and Sarah spelled Aaron.

I talked with Dr. Yannucci’s PA, Nora’s radiologist, and all scans (head, total bone and spine) only show the cancer in the spinal fluid. We’re taking this a day at a time. That’s the plan. Nora is in PCU now. She told me to go home and get some rest. The best news about that is she actually TOLD ME. Her greatest frustrations: she can’t see and can’t move herself much.

Creekside, Aaron deVere

Kids really help her. Still in great pain, she becomes more lucid, active when they are there. Sarah and Aaron make her smile. (Here are all my worldly possessions … smile again.)

Excuse my hospital/medical jargon but her vitals are good. Blood pressure a bit high. Still trying to get this pain thing balanced so Nora can come home. And be comfortable. And get away from of the machines and the pulling and prodding (all done with gentleness and, I have seen, in some cases, with love).

If Nora can take it, chemo in the back scheduled for Tuesday. We’ll see.

Again, than you for your kind thoughts and prayers.

Paul

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