Month: October 2012

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All the gory details about the GVAX trial

Robert is scheduled to begin the GVAX trial at Johns Hopkins next week. If you want to know what it’s all about, and/or why we decided to go this route, this post will explain.

First a refresher – this trial is being done to test an experimental vaccine that is intended to boost the body’s immune system to fight melanoma. Although we know that there are no active cancer cells growing in his body, we don’t know whether there are tiny, inactive cells (micro-metastases) lurking in there somewhere that might decide to become active at some point in the future. If there are, we hope this vaccine will stimulate an immune reaction in his body to kill them.
Robert is at high risk for recurrence of his melanoma because this was a very deep lesion – 9.5mm. That means that it extended down into the dermis, close to where microscopic cancer cells could enter the lymphatic system and might be transported to other parts of his body. So, while it would be nice to think that all the cancer was removed, as the biopsies indicated, our doctors don’t think it’s prudent to count on that. Therefore, they have recommended that he participate in this trial so that he can get the vaccine.
The trial’s purpose is study the safety of the vaccine at different doses. The first study group received a low dosage of the vaccine, and when no serious adverse reactions were found, the second group began to receive higher doses. Robert is in this second group.
The vaccine will be administered four times, at 28-day intervals, beginning on November 6. Each month, the correct amount of vaccine for Robert’s body weight will be injected at six sites on his arms and thighs. One to two hours beforehand, a skin-numbing medicine will be applied to each vaccine site. After the injections, we will wait about a half hour to see if there is a reaction. As long as there’s no bad reaction, he will be discharged.
Two weeks after each vaccination, Robert will call our study nurse, Susan, to report on any side effects he has had from the vaccine. Common side effects are redness, swelling, itching, and/or soreness at the vaccine sites. Less-common side effects are flu-like symptoms, including fatigue, rashes, low-grade fever, and chills, as well as swollen lymph nodes and flare-ups at the injection sites. Susan told us that so far none of the study participants have had more serious side effects.
After the first and fourth injections, we will return to Johns Hopkins two days later for a biopsy of one of the vaccination sites. The biopsy sample will be studied in a research laboratory and/or by a pathologist to look for effects from the vaccine.
One month after the final vaccine, in late February, Robert will have a check-up including blood work. The final visit will be April 23, when he will have the six-month CT scan of his chest, abdomen, and pelvis and a brain MRI in addition to the physical  exam and blood work. I guess that makes April 23 my next, highly anticipated date with N.E.D. …
The Food and Drug Administration considers this GVAX vaccine to be a kind of “gene therapy,” and the FDA wants all patients receiving gene therapy to undergo five years of follow-up, looking for “late side effects.” These annual visits will include physical exams, blood tests, and scans. If possible, we will have the follow-up care with Dr. Lipson here in D.C. at Sibley Hospital, which Hopkins has acquired recently. Dr. Lipson will be starting up a research program at Sibley, which is just a few miles from our house.
So – that’s the scoop! Questions? Feel free to call.

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A fresh start on setting priorities

Nearly five months ago I suspended my consulting and freelance business in the face of Robert’s then-impending surgery to remove a large melanoma from his scalp. I was too distracted, not to mention too busy with medical appointments and emotional upheaval, to concentrate on work, and I didn’t want to let any clients down by not meeting deadlines or by handing in sub-par assignments.
Now that the scare of a four- to eight-month prognosis is behind us and Robert’s status is “healthy” and “No Evidence of Disease,” the question comes up from time to time: am I “ready” to go back to work? And the answer is – NO!

I had a very busy summer playing Nurse Ratched in June and July, and then traveling to New England in August and to Asheville and Ft. Lauderdale in September. October has been a waste, basically – I have nothing to show for it. As a matter of fact, this post was inspired by my weekly Saturday phone date with my mother, who (as usual) asked what I had done this week. I couldn’t think of a thing! I was busy all week, to be sure – there weren’t any patches of time when I batted around looking for something to do. Where did the time go?
I’m sure if I thought hard about it I could come up with something useful or productive to report for the last seven days. But off the top of my head, I can only come up with things I didn’t do. Two quickly come to mind: write about the upcoming melanoma vaccine trial at Johns Hopkins, and start the email correspondence with our Thanksgiving crew to plan the menu.
Both of those things will be on my immediate list of tasks. But first, I’m taking on an even more important one – setting priorities for this next period of time, however long it lasts. I’m sure this list will change over time, but here’s my starting point:

1.      Taking “care” of Robert
As I told one of the nurses at Hopkins last week, my main job right now is to see to it that Robert can continue to do what he wants for as long as possible. To some extent that means looking out for his well-being when he loses track of what’s important. I have to walk a fine line here so I don’t become the nagging, fawning wifey I’ve never been – but I do want him to wear sunscreen and a big floppy hat, get some exercise, and do whatever else the doctors tell him to do.
I plan to accompany him on all his medical appointments for the vaccine trial. I also plan to go with him to the dermatologist on a search for any suspicious spots on his body. I want to learn what to look for and photograph any moles or freckles that bear watching, as Dr. Lipson  suggested.

2.      Taking care of myself
I probably can’t do #1 if I don’t do this, so I might as well state this priority near the top of my list.
My gym schedule will undoubtedly slip a bit – I can’t work out four days a week and at the same time go to all those medical appointments, particularly not in weeks when we have to see doctors two or three times. I’ve had a regular morning gym routine for months – muscle training on Mondays, abs and stretch on Tuesdays, active yoga on Wednesdays, and TRX on Fridays. I’ll go as often as I can, and fill in with long walks with Chewey, yoga at home, or some kind of aerobic exercise as I need to.
I also plan to keep working on my diet. I’ve lost about 25 pounds and would like to keep it off. Besides, I like cooking and eating healthy foods. I’m going to try to wrestle some of the weekday cooking away from Robert, even if it means putting up with how he “cleans” the kitchen afterwards …

3.      Working on this website
I registered my name as a URL last winter with the intention of moving my work website there over the following year. When I started this blog last June, I did so at that URL. As we approach time to renew my by-words URLs, I would like to build this website into one that can replace the one I set up when I started freelancing in 2007.
My goal of learning more about Drupal 7 is only partially accomplished. Of course with Drupal there’s always more to learn, and I don’t have a plan for how to do this on my own. But it is important because …
My work website is a mess! It was more important for me to work on it when I was actively looking for clients, but with BNA projects and Risk Retention Reporter taking up all my work time over the last couple of years I have not kept it up. The portfolio is lacking, and I never did make the visual presentation work out the way I wanted it to. But I don’t want to put any more time into it – this website offers me a clean slate.
It’s time to envision what I want my web presence to be, whether I stay retired or not. As I know from working with clients, this is not an easy job – and I don’t expect to complete it by the by-words.com renewal date. But I would like to get it done before I have to think again about whether to “go back to work.” April, after the Hopkins trial is over? We’ll see.
*******************
I think three big ones is enough to articulate in one day. We’ll revisit this topic again over time. 

N.E.D.!!!

NED my friend – so happy to see you again!
We heard from Hopkins today – all Robert’s tests and scans were clear. There was no evidence of disease in his body, and we are cleared to begin the GVAX trial on November 6. YAY!!!
This is the second group of the study, so Robert will be receiving a higher dose of the vaccine than they were giving in the first group – but not the chemotherapy drug that troubled Dr. Venna but has the potential to boost the effectiveness of the vaccine. I’m neutral on this issue – just glad there is something – ANYTHING – we can do to keep NED around.
There will be plenty of opportunities for me to write about the vaccine trial, but I don’t have any more to say right now – so will close and get this posted.

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Shorter – but still long

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.

A walk in the park

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!

Looking at life differently

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.

‘Will work for wine!’

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!”

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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!

Worries about distracted parenting

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!

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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.