Our day at Johns Hopkins on Friday turned out to be shorter than we expected – they called at the last minute to say not to come until 10. We were very busy (yes, a little “hurry up and wait”) until 3 p.m., and we left with only one reservation – that we still didn’t have much more information than we left home with.
We met first with Susan Sartorius Mergenthaler, who went through the “routine” with us. We got a potential schedule for what the trial will be like if Robert passed all his tests later in the day. We were able to push the proposed schedule for the first injections off until the first full week in November, allowing Robert to get past his deadline for a cert. petition to be filed in the Supreme Court on November 1 without interruption – and also allowing for our Thanksgiving travel schedule not to delay some of the follow-up tests.
Susan then walked us through every little detail of the “informed consent” document that Robert had to sign before anyone else could carry out their tests. Now we were ready to see Dr. Evan Lipson, who “poked and prodded” to make sure there were no enlarged lymph nodes lurking around in Robert’s body. He also asked a million questions about medical history and gave us advice about follow-up care regardless of whether Robert is accepted into the study. Some of his advice we had heard before – sun screen, wide-brimmed hat, regular check-ups with an oncologist (he suggested every four months), dermatologist visits every three months, and in between those visits, check all over Robert’s body regularly to see if any spots look suspicious, or look different from last time we saw them.
Here’s what was new: Dr. Lipson suggested that if we see something suspicious, we should take a high-quality digital photo of it so that we can compare the baseline with what we see in another month or two. This we can do – it’s just a question of getting in the habit … Also, Hopkins did not do a thorough skin exam with a Wood’s lamp, as I expected – we should go to Robert’s dermatologist for that, particularly since he has been looking at Robert’s spots for the last few years. We will make that appointment as soon as possible.
Next we met Robert Gray, the phlebotomy nurse, who inserted an IV before taking several vials of blood to make sure our Robert is healthy enough to be in the study. After having an EKG, we scurried to get to Radiology in time for the afternoon schedule.
Let me stop for minute and say something about the people in the cancer center. Every receptionist and accounting person we met smiled and was pleasant, gave us time for questions and answered every one. The professionals – the nurses, Susan and Robert, as well as Dr. Lipson – wanted to know who we are as people even before they talked to us about the reason we were there. It did not seem like idle chatter – they really wanted to know about both of us. I have spent plenty of time in other medical institutions and don’t remember having such a pleasant experience.
Radiology was – well, efficient! First Robert had to drink 24 ounces of “stuff” for the CT scan. Then we had to wait a little while, and then they took him in for a very quick tour in their fancy machine. Down the hall we went to the MRI section, where we waited a very short time before they were ready for the test. This one took a while – and it was very noisy, even in the corridor where I was waiting but even louder for Robert. I lost track of time, but I think it may have lasted about 45 minutes.
After we got dressed, we waited about 10 minutes for the MRI technicians to make a copy of the study for us. We picked up the disk from the CT scan on our way out.
Our next stop was Bertha’s – our favorite Baltimore restaurant. It’s a short drive down Broadway from Hopkins to Fells Point – good thing, because it was after 3 and we were pretty hungry by then! Robert was allowed breakfast but no food afterwards, to keep the sugar he had to drink focused on any cancer cells that were active in his body. Although we believe and hope there are none, we don’t want to confuse the radiologist reading the CT scan into thinking that metabolic activity in his stomach is some wayward melanoma cells lurking there …
At Bertha’s, of course, we ate mussels! That’s what one does there … well actually, some people were ordering other things. We just couldn’t figure that one out …
Our ride home was longer than it should have been, probably a combination of rush hour traffic leaving Baltimore between 4:30 and 6 but also because an unexpected storm came up through Montgomery County. We weren’t home until about 6:30 – yes, a long day, but at least it didn’t start at 7 a.m.! And, there was a lovely hour spent at Bertha’s … we hope to be back there soon!
Of course, radiology at the end of the day – and on a Friday – means we got no instant gratification. Susan will call us when she has results. And, we will post the results here as soon as that happens. In the meantime, please call if you have something else to talk about … we really do like to talk with family and friends, and we particularly want to share whatever’s going on with you.
Author: Hazel Becker
Chewey and I would like to thank the National Park Service for hosting our excursion on this glorious fall day!
I’m glad that I’ve discovered the pleasures of walking in Rock Creek Park after living in this neighborhood for nearly 30 years. Chewey and I started taking long walks (akin to hikes, so worthy of replacing a workout!) in the spring. The terrible, hot summer put an end to that routine by the end of June, though.
I’m glad we’ve resumed it, at least until the weather turns cold. I’m also glad for my new camera, which takes pictures far superior to those I get on my ‘droid.
The park is still pretty green – much moreso than our neighborhood, which is full of showy maples in full fall colors. Even so, under the canopy the colors are pretty intense.
Today the sky was blue and the air was crisp.
Rock Creek was clear and sometimes smooth enough to reflect the beautiful sky.
Also clear enough for Chewey to get a drink!
Here are the details (for those who doubt the part about the workout):
We’ll try to do this at least once a week until the weather betrays us. I’m looking forward to the next one already!
A Washington Post article about a Bethesda teen who’s recovering from an infection with necrotizing fasciitis (also known as “flesh-eating bacteria”) got me thinking – after I read every word. I couldn’t help but see a few parallels between her 16th birthday and my own. We both “celebrated” in hospitals, uncertain about our futures. And both of us were changed by our brushes with death at a young age.
Doctors credit Alexis Hanford’s fighting, positive attitude for making “the difference” in recovering from her infection. I don’t remember what my attitude toward my illness was, and really the parallels end with those two: “sweet 16” birthday in hospital, coming out with a new perspective on life.
My illness – characterized by dangerously low white blood cell and platelet counts – was never diagnosed with any certainty, and my struggle did not include high fevers or pain measured at 10 on a scale of 1 to 10, as did Alexis’s. True, I was confused about what was going on inside my body, and I remember studying about it – reading everything I could understand and writing papers for school before we knew that I would have to give up my junior year. But I don’t remember feeling I was fighting for my life, and I certainly didn’t face the months of rehab and pain Alexis has been through and continues to face.
Post reporter Valerie Strauss got me to thinking about this when she quoted Alexis as saying, “It just makes you look at life differently.” In retrospect, and even at the time, I have been aware of the changes this experience brought about in my approach to life, and particularly how I face adversity.
I think Alexis was referring to her exposure to people with worse afflictions than her own: she said, “What we consider normal — going to college, getting a job, getting married — isn’t going to happen for those people.” I wasn’t exposed to other people during my hospitalizations in 1963 – my low white count left me vulnerable to infection and kept me in isolation, both in the hospitals and at home, for months. I’m pretty sure I didn’t think about anyone other than myself during my recovery.
But I knew I was going through a life-changing experience. It was fall in Kansas City, and I remember watching the leaves change colors outside my window at Menorah Hospital. By the time spring came, massive doses of prednisone had begun to work, mysteriously, toward bringing my blood counts up somewhat. I still couldn’t go out much, so I spent a lot of time watching the buds and leaves unfold on the trees.
For many a spring thereafter, I made sure I watched the leaves grow in the spring. I’m pretty sure my love of nature and growing things stems from the attention I paid, through the windows, to the outside world that spring.
My parallel with Alexis Hanford, though, is in another change I perceived from the newspaper article: acquiring a different view of life. Focusing on what’s really important is pretty easy for me – I haven’t got much patience for petty jealousies or gossip, and I don’t put much importance on glitz and glamour. I don’t waste much time or energy on pursuits that aren’t rewarding in one way or another. And, I thank my lucky stars for all the wonderful experiences I’ve had while trying not to take tomorrow for granted.
I think it all stems back to my 17th year, not the happiest time of my life but one that I’m grateful for nonetheless.
The title of this post repeats what our friend Lorna Melendy said Saturday as we were selecting wines we were given as a thank-you for pouring Kilaurwen wines at a tasting event. We wholeheartedly agree!
Kilaurwen is the vineyard and winery owned by Doriene and Bob Steeves in Stanardsville, Va., a little way north of Charlottesville.
Doriene Steeves
We first met Doriene and Bob when Robert and Doriene’s brother David Melendy were roommates at GW – and when the three Steeves “girls” after whom the winery is named were stairsteps, all still in grade school (or younger). After retiring from federal government jobs Doriene and Bob moved full-time to the vineyard they started in 1994. In the beginning they sold all their grapes to other Virginia winemakers. They began producing their own wine in 2009.
Saturday’s event was a small section – the “Wine Garden” – of the Manassas Fall Jubilee, an annual festival in Old Town Manassas, Va., near where two of the Civil War’s early battles were fought. We knew we were in a different world as we drove past tons of Romney-Ryan signs peppering the landscape on our way into town. Not to worry – we knew we would be in foreign territory before we left home – and not because the Confederate Army won both of the Manassas battles. Doriene and Bob have long worked for Bob and Elizabeth Dole, John Warner, and other Republicans. We enjoy their company tremendously but don’t talk politics much! When we do, they are thoughtful listeners and reasonable debaters.
We started the day by changing into our new Kilaurwen shirts, and then Bob poured us samples of each of the wines they were selling that day. We learned to use the pouring caps that measure the “right” amount into each glass, and we learned the composition of each variety in their tasting flight. Most of their wines are dry, with the exception of one white and one red that are “off-dry” – made mostly from dry-wine grapes, with a little concentrate of sweet-grape juice with or without sugar. These Fiesta wines, we were told (and repeated often during the day), make great Sangria, and the Fiesta Red can be served chilled or warm and mulled.
We learned what varieties of grapes each wine is made of – primarily Rkatziteli and Viognier for the whites and Cabernet Franc for the reds. Their stock of Reisling and Rose wines was depleted earlier in the year, so we did not have those to offer. Some visitors came looking specifically for their Reisling, which will be back in stock in the spring when the next group of wines matures. Most of what we were pouring was made in 2010 – the exception was a 2009 Cab Franc that I particularly like.
Lorna Melendy (right) awaits the verdict of her customer.
We had a beautiful sunny morning, and in the afternoon the wind picked up. Before our shift ended at 1:30 we helped Bob take down some of the Kilaurwen banners, which threatened to take our tent for a ride.
Lorna’s friend Lynne (left) joined us on our shift.
Doriene and I were remarking Saturday about how long we’ve known each other, and I do think it’s remarkable that we’ve kept in touch through the years. That’s largely because of David and Lorna, our longtime close friends – we’ve lived near them all but a few years since leaving GW, in Connecticut from 1973-1982 and then here in D.C. We’ve gotten to know each other’s families through the years, and that includes the Steeves clan. We’re looking forward to pouring at another festival in the future. As Lorna said, “Will work for wine!”
I’m noticing more and more lately, when taking Chewey to the park in the afternoons, how little attention some parents pay to their children these days. My observations lead me to worry about the effect that mobile devices will have on the next generation – not from the kids’ using them but from their parents’ neglect.
The other day I saw a dad supposedly watching his kids from a park bench while the boys were climbing on playground equipment carrying sticks. What a recipe for disaster! But the dad was busy talking on his cell phone, apparently engaged in a business conversation with a colleague. Dad’s gaze was directed toward the play structure, but his eyes appeared to be focused far off (if at all). A nanny with another child in the group took the sticks away – disaster averted this time – but didn’t explain why to these two boys, only to her charge. The two boys – perhaps five and seven years old – ran to Dad to complain, but he turned away from them until his conversation was finished about five minutes later.
I wasn’t shocked by this – I have become accustomed to seeing parents with tablets and mobile phones, reading or playing games while their children play in the park. Is this any different from knitting or reading while the kids watch a DVD or Netflix? I know that sometimes Gabriel needs quiet time sitting on the sofa, and if Wonder Pets gets him to be still for a few minutes I’ll try to ignore how stupid it is. Knitting helps me not to lose my mind while he’s “watching.”.
But then, I find it too easy to check email on my phone or iPad while he’s playing with his trains and then not direct my attention back to him until he demands that I do. I remember spending hours with my kids in the sandbox, or on the floor with shape-sorters and puzzles, listening to their chatter and marveling at how quickly they were learning, chuckling at some of the strange things that came out of their mouths. I just hope today’s kids get enough attention from their parents – and that their parents will have wonderful stories to tell down the road.
And I’ll try to remember this, too, when I’m with Gabriel in November. He deserves my undivided attention as much of the time as possible – and I will be rewarded with memories to get me through the long stretches we are apart!
A busy day ahead
We got our schedule for Oct. 19 at Johns Hopkins – what a busy day that will be!
8 a.m. – Labs
9 a.m. – meet with Susan Sartorius, the nurse who’s organizing the study
10 a.m. – meet with Dr. Evan Lipson, melanoma specialist
11 a.m. – meet with Robert Gray, a nurse in the Weinberg Cancer Center (not sure what for …)
12:40 – CT scan
1:50 – MRI
2:20 – Tesla MRI
Don’t ask me what it all means, or who’s going to do what. I only know that it will be a long day – we will leave home by 7 a.m. and not return until sometime during the afternoon rush hour. And, that Robert will get a thorough going-over.
Luckily, Loren will most likely be available to come visit Chewey – if not, we’ll figure something else out.
If we still have any energy, we’ll go to the Kehila adult oneg that night – the speaker is a Kosher baker with a new cookbook, and I’m not sure we’ll be able to resist!
Believe it or not, I’m looking forward to this. Crazy, huh? It’s amazing how a good scare can keep you focused on what’s important in life!
A worthy experiment with open accounts
When I first set up this site, I configured the New User settings so that people could register for an account but I would have to approve any new accounts before the user could gain advanced access to the site – to blog, for example. I want my family, friends, and colleagues with my same interests to be able to post their thoughts on the site. However, that experiment is now over – I found at first that some new account requests were coming from robots, but lately I’m annoyed by the number of requests I’m getting from people who are interested in “cars” or a jumble of characters, and that people were claiming to be my family, friends, colleagues, or clients when – clearly – they were not.
So, as of now, if you want me to set up an account for you, please use the contact form or one of my email addresses (if you know one!) to ask me to do that. I will follow through if I know you, or if you send me a working email address and links to web pages convince me you are interested in discussing melanoma, drupal, or publishing/journalism/blogging.
I consider this experiment with allowing people to set up their own accounts a success even though I’m changing course. It gave me a chance to see how this work on a client’s site if the client wanted to encourage a lot of users and traffic on a site. I know how that works now. I’m done with that experiment!
For this site, my main purpose was to keep my family and friends updated on Robert’s melanoma treatment – and it’s served that purpose well. A lot of my friends and family have registered already, and more folks who haven’t registered come to the site from time to time for updates. I will continue to use it that way, and to research other topics related to melanoma. (For example, I plan to write about immune response – it’s so interesting to me that Robert’s body tried to get rid of the cancer on its own, and I want to know how we can keep his immune system fighting hard once the vaccine trial is over.)
I also encourage users who want to share information or experiences about melanoma, journalism, blogging, and/or drupal to participate in any discussions that interest them.
I’m not particularly interested in giving a soapbox to people who want to hype their own sites or discuss topics I don’t find engaging. I also am concerned about the possibility that unknown users would access my website for other purposes. There’s so much devilry going on on the web now – I don’t want to encourage that here.
So, as of now, I’ll set up accounts. I may still be annoyed by people seeking accounts, but at least I can delete their emails without having to remove their website accounts.
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.
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.
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.