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My delayed date with NED

For those who were looking for an update from Robert’s first follow-up appointment – sorry, it will come a little late. That’s because he is hoping to enter the GVAX vaccine trial at Johns Hopkins, and the earliest appointment when they can do all the screening on one day is October 18. I’m happy that we know what’s next, but unhappy about the delay – I was looking forward to another date with NED long about now!

With the “watch and wait” follow-up, patients are screened quarterly with a Wood’s lamp. In this screening, the dermatologist examines the patient’s skin with a special light that highlights any contrast in pigmentation that indicates melanocytes have been destroyed by an immune response, indicating an early-stage melanoma. They also have follow-up PET/CT scans twice a year. Following that schedule, Robert would have been screened and examined (poked, prodded, etc.) last week, and at least we would know that there is no skin metastasis and none of his lymph nodes are enlarged – in other words, he would still be NED. The PET/CT would have been ordered in December.
So, we’ll wait until October 18 for his first follow-up exam. The good news (to me, at least!) is that he will also have a full complement of other scans and tests that day – including the PET/CT scan that otherwise would be given in December and an MRI of his body, including his brain. We expect these scans to be much more detailed and inclusive than the tests he otherwise would have 90 days after surgery.
The screening that day will repeat many of the tests he had during his pre-surgery physical, including standard blood tests and kidney and liver-function tests, an EKG, and blood tests for Hepatitis B and C as well as HIV. Bad results on any of these tests could knock him out of the study, even if none of the scans turn up evidence of melanoma.
But we’re fully expecting everything to go smoothly from here on out. And assuming all goes well, his first vaccine injections will likely be scheduled for the first or second Tuesday in November.
Guess who might make good use of early voting in D.C. this year?!
Call or email if you have questions. We’ll answer them if we can.

Tips on Finding Freelance Success

Here’s a quick summary of my take-away from the session on Finding Freelance Success given by Robyn Sekula Davis and Jeff Cutler at SPJ’s national convention:

Capitalize on all your opportunities to write something for someone. Ask where every piece of writing came from. If you are reading it, someone wrote it.
Choose your clients with a mix of potential conflicts in mind. If you write for a company or organization, you might need to decide later on not to cover an event or happening that client is involved in. In other words, you should not cover a company you write PR or ad copy for. Think about that up front – before you write speeches or blog posts for a client in the field you specialize in covering.
Err on the side of disclosing too much about your potential conflicts of interest. That gives the client the opportunity to decide whether you have one.
Everyone you meet has the potential to throw work your way, so be open to connections.
When a potential client says “no” to a pitch, it really means “no for now.” Be open to opportunities to approach him/her another time – and be ready when s/he calls in the future.
Freelancers have NO LEEWAY for errors in their copy. They are more accountable for meeting deadlines than staff writers, and it is more important for them to follow instructions to a T.
When someone asks you what you would charge to do a particular job, don’t bid too low! Figure out how long it’s really going to take to complete the assignment, and don’t be afraid to put your number out there. There is room for bargaining down, not up.

Saving the sea turtles

When we first went walking on Ft. Lauderdale beach, coming home from dinner on Wednesday night, we found some areas that were marked off with posts and pink tape to keep people from crossing them. They were scattered up and down the beach, some close to the ocean and others in the dunes. My long beach walk on Thursday morning, while Robert attended the Society of Professional Journalists board meeting, revealed that these were sea turtle nests being watched over by a group called Sea Turtle Oversight Protection.

When the mama turtles come up on the beach to nest in the spring, this organization observes them and, once the females have left their deposits in the sand, sets posts and pink plastic tape around them. Each nest is numbered and given a sign that warns people not to disturb the nest. 

The female turtle comes ashore at night to lay her eggs. She digs an indentation in the sand big enough for her body and then uses her powerful back flippers to dig a deep hole for her eggs. After depositing between 50 and 200 eggs, she covers them over and returns to the sea, leaving the eggs untended. When it’s time to hatch, the babies work together to break out of the nest – usually at night. Although they instinctively head for the ocean en masse, they become distracted by bright lights in populated areas and head in the wrong direction, leaving them exposed to predators once daylight comes and to traffic if they happen across a road.
S.T.O.P. volunteers monitor the beaches in nesting season, marking and numbering the nests. The group keeps track of where they are so that volunteers can return when it’s time for the hatchlings to emerge – generally about 45-50 days later. They watch the nests each night so that they can help any disoriented hatchlings find their way to their natural habitat – the ocean. They also look for tracks in the sand and attempt to count the number of trails indicating that hatchlings made their way to the water. That’s what John was doing – the volunteer in this picture.

The variety of different tracks in the sand can make this a challenging task. There’s one set of sea turtle tracks going right to left in the next photo. The tracks going from top to bottom are from shore birds.

John was kind enough to show me what what he was seeing. This next photo has trails from three hatchlings that may have made it all the way to the ocean.

I think John was not very happy with his count that day – 39 trails. The S.T.O.P. volunteers generally hope to help a bigger number of hatchlings from each nest get to their native habitat. The odds for hatchling survival are not very high even in nature – perhaps 1 in 1,000. It would take more than 39 swimmers from each nest to ensure survival of this threatened animal.
Other S.T.O.P. volunteers could not conceal their disappointment at losing so many from this nest. They had been watching the nest for eight hours the previous night and said they left 15 minutes before the hatchlings emerged. 

Because the nest was so close to a parking lot, it was inevitable that many of the hatchlings would move toward the bright street lights instead of the (relative) safety of the ocean.

According to S.T.O.P.’s website, Ft. Lauderdale Beach is heavily monitored – volunteers had filed 705 hatch reports there by Sept. 24, covering about 60% of the 52,000 hatchlings they have counted so far this year. Of the Ft. Lauderdale hatchling crew, S.T.O.P. reports that 39% were disoriented.
Our convention hotel – the Marriott Harbor Beach Resort – says it has helped in the rescue effort by installing sea-turtle-friendly lighting, and the S.T.O.P. website seems to support Marriott’s claim. Most of the nests that have hatched so far this year on the beach in front of the hotel have been reported to have less than 1% disorientation. I doubt this was an issue for SPJ in choosing the venue, but I’m glad our hotel is doing its part.

Gabriel turns 3!

My trip to Asheville for Gabriel’s birthday was wonderful – what a delightful four days! It’s fun to watch how he’s grown and matured, and to be part of the changes that are taking place in his life. One thing is constant: his focus on vehicles of all sorts. At home and at his new school, trains are a major focus. I’m always blown away by how contemplative he is. If only we could know what’s on his mind …

On Friday, when we took him for the first time to visit Asheville Academy, his new school, the trains were – not surprisingly – a big attraction.

Another draw was the kitchen in the area where the little-ones play house.

These play areas are in the room called the Library, and I could tell from the white-boards that the teacher uses the time she has with the older children doing more library-like activities. She also spent individual time with the three-year-olds on learning letters. Also in this Library, Gabriel had his first experience with a desktop computer and a mouse. Mommy helped him learn.

In the Science Lab, Gabriel had his first experience of sitting at a table with a bunch of children waiting his turn. I was amazed at how well he did! The “experiment” this day was making green clouds – wetting a wad of tissues with green-colored water – and then squeezing them to make green rain.

After we visited school Gabriel went to daycare, and when Allison and I went to pick him up later in the day we had a wonderful surprise – a helicopter was stringing electric lines not far from Barbara’s house. Of course we stopped and watched for a while…

All the activity in the Becker-Luibel kitchen that evening was about making ready for Gabriel’s party. Mommy and Mama did an awesome job making pirate cupcakes!

On Saturday we started the birthday festivities. The party was at a wonderful playroom called Health Adventure – which Gabriel calls “Happy Venture!” In addition to the fact that he loves to go there, it was a wonderful venue for his pirate party because one feature is a pirate ship. Here, he’s steering the ship:

Health Adventure is full of activities, and the pirate ship is a prime physical attraction. The kids needed to climb a ladder to get to the steering deck:

Exiting via the plank was also fun!

There were lots of gravity set-ups – including this one, where he needed a boost from Grandma to put the ball in the shoot.

And of course, he found his way to the kitchen …

In the party room, the kids got a big dose of pirate gear. Most of the littlest ones didn’t really appreciate the eye patch, so we were lucky to get this shot:

It was hard waiting until we got home for Mama to set up Gabriel’s new tool bench. The goggles were a big attraction at first, but soon the drill was a favorite toy.

Somehow we got in a nap before leaving for dinner at Cedric’s, where Melissa was providing the evening’s music. Gabriel’s treasured new harmonica came in handy. Thank you, Ryan!

On birthday Sunday, of course, there were more presents!

Mama helped set up the new trains.

The LeapPad (a junior-sized iPad) was a big hit and included special learning games for letters and numbers.

We ended the day with birthday dinner at the Stone Bowl, where stainless steel chopsticks are wonderful for eating Korean pancake (also wonderful!).

It was a long day – but a happy one!
Gabriel’s adjustment to being three continues. Allison and I took him to school on Monday morning  and, perhaps, stayed too long. He cried when we left … but Al tells me he has not cried since. Some days he says he doesn’t want to go to school, but then when they arrive at Asheville Academy he says, “I’m so ‘cited!” I’m guessing he will soon be potty-trained – we noticed after taking him to visit that Friday that his interest in using the potty at home picked up, and I think he must have noticed the other kids lining up at potty time.
He knew I was returning to Washington on Monday after taking him to school, but even so he asked where I was when Stephanie picked him up at the end of the day. He seemed to accept the explanation that I had to go home to take care of Grandpa. But since then he has told Allison at least once, “I’m going to Grandma’s house tomorrow.” I think he’s even old enough now to know what my house looks like – and he associates others in the family with their milieus. When he last spoke with Gram El, he mentioned something about going to the beach …
And we’ll do plenty of that at Thanksgiving if the weather’s good.
Be good ‘til then, sweet boy …

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Released!

We had our last visit with Dr. Convit yesterday, and Robert no longer needs to keep his skin graft covered. There is still a scab over a small portion of the graft, but Dr. Convit said it should fall off naturally. It’s OK to wash his head in luke-warm water and to shampoo the entire site (hair or no hair …). No more bandages. No more Nurse Ratched! Yay for me! Progress for Roberet  indeed!
I will miss our periodic visits with the plastic surgeon because he has been the most encouraging and upbeat member of the team we have seen at Washington Hospital Center. But I’m glad we are moving on to what’s next …

As for what that is – Robert is on the list to begin a clinical trial at Johns Hopkins of the GVAX vaccine that is being tested in melanoma. This type of vaccine has been used safetly against other kinds of cancer. There’s actually now starting to be some evidence that the GVAX vaccine for pancreatic cancer improves patients’ lifespans, but for us the evidence is less important than the possibility that it will do some good. 
The study procedure is somewhat tedious in the beginning, and right now we’re in the “wait” stage. The folks at Hopkins are working with our insurance company to see how much of the treatment costs will be paid through insurance (thank you, BBNA) and how much Hopkins will pick up. Once that has been settled, we’ll go to Baltimore a few times for screening and testing. This will include the three-month full-body scan with a Wood’s lamp (for an explanation click here) to make sure no more melanomas have cropped up; PET, MRI, and brain scans to look for other active cancer sites in his body; a full set of blood tests and EKG; and a review of the pathology specimens at Hopkins. We expect all of this to take place in September/October and the series of four monthly vaccinations to begin in October or November.
It’s not been determined yet whether Robert will be in the second or third study group. The second group receives only the high dose of the vaccine and the third group also receives injections of cyclophosphamide one day before each vaccination. There is one more slot in the second group before the third group begins to be treated. If someone else moves along more quickly Robert would be in the group that receives the low-dose chemotherapy drug as well. (My July 24 post discussed cyclophosphamide and other factors we needed to consider before deciding whether to enter the trial.) If he ends up in the third group, it will mean two trips to Baltimore for each vaccination rather than one. On the other hand, it appears that the cyclophosphamide would be beneficial.
We might prefer to be in the third group, as long as it doesn’t delay starting the vaccines too long. There is a deadline – the vaccinations must begin within 4 months of when he was determined to be free of disease. There’s some question about whether that falls in October or November … we are awaiting word on the actual deadline.
We did take some time to consider a peptide vaccine trial that’s starting up at the University of Virginia. This clinical study is just beginning, and the procedures are much more involved – a big factor for us because Charlottesville is so much further away than Baltimore. I think the deciding factor for Robert was that the screening for the peptide vaccine trial includes a sentinel node biopsy of the vaccine site. (Robert explained this procedure in an email I copied here on June 12.) He’s not too keen on going through that again …
September is a busy month. I’ll be in Asheville for Gabriel’s birthday, and later in the month we take off for the Society of Professional Journalists’ annual convention. Mix in there the High Holidays and several work deadlines for Robert – plus whatever we have to do in Baltimore – and we’re looking forward to October! But we can always take time to talk with family and friends, so if you have any questions about any of this, just give us a call.

Eating right

I hope Thursday’s post didn’t leave anyone with the impression that I don’t understand the part diet plays in my weight loss. I know that restricting sweets is important if I want to keep the weight off. A new study released by researchers at the University of Pittsburgh reinforces this and goes one step further – according to a review of the study at psychcentral.com, “…eating more fruits and vegetables and less meat and cheese emerged as … important predictors for long-term weight loss.”

The study corroborated what we’ve known for a long time: that cutting back on sugary beverages and desserts as well as high-fat foods is important if you want to lose weight. The new finding, that eating more fruits and vegetables is important if you want to keep the weight off once you’ve lost it, corroborates what I’ve come to believe over the last two years.
it’s not my own case that led me to this belief—for most of my adult life I’ve eaten a lot of fruits and vegetables. It was my mother’s loss of 30 to 40 pounds over the last two years. I found her case particularly interesting—she was overweight for many years, and we had been after her to eat better and become more physically active so she would lose some of the extra pounds. She always claimed she couldn’t eat salads, and she didn’t like to eat most fruits—they “didn’t agree” with her. That changed almost two years ago, after she had a bleeding ulcer repaired and was treated for the H. pylori infection that caused the ulcer. Her hospitalization and recovery started her off on the weight-loss, but that could only account for the first five to 10 pounds.
Once the ulcer was gone, Mom’s eating habits changed. Suddenly she was able to eat more raw vegetables and fruits, and she found she liked them! Her diet improved considerably. And, her weight kept dropping, and has stayed off. I think she’s living proof that the researchers at Pitt are onto something!
The revelation in their study won’t change my eating habits much—I’ve always loved fresh fruits and vegetables. And, I’ve been eating less meat since I had an altercation with a kidney stone several years ago. The analysis of my stone found that it was made up mostly of calcium in meat proteins—including those from fish and shellfish. My urologist said it was OK to replace meat proteins with those in dairy products, but because I was concerned about gaining weight from eating too much cheese, I started relying on reduced-fat cheeses and yogurt whenever possible. Even with the reductions in meat and high-fat dairy products, I kept gaining weigt—not an uncommon problem for post-menopausal women, who were the subject of the University of Pittsburgh study. In my case, I believe the reduction of caloric intake has been as important as increasing my weekly exercise to about 250 hours. As I found out recently, I need not to be too restrictive because if I am too hungry I’m going to say, “Screw the diet!” and stop counting calories.
It’s a complicated situation. I intend to keep at it. I look better and feel terrific! I love eating, and I’m happy with what I eat. And, I love the way I feel when I’ve been to the gym. Life is good all around!