Category: Blog

It seems as though life is at a crawl here. However, I expect our tolerance for waiting will increase tomorrow, when Allison and her family arrive! It will be good to have the distractions, and something to engage us while we wait for what comes next.

Four days post-surgery, we have adjusted to the status quo. Robert is set to see the plastic surgeon on Tuesday to have the official unveiling. His head is wrapped with what Dr. Convit called a “mummy bandage.” Essentially, there is an ace bandage covering the gauze that covers his wounds. It keeps pressure on the graft site – and also creates tension around his face, which is the major discomfort he feels. On one side it covers the incision from the sentinal node extraction. On the other, we can see the gauze.
He also has an incision on his abdomen where Dr. Convit took the skin to graft to his head. This is less troublesome for him, he says – he doesn’t feel it. However, it is bandaged and needs to be kept dry.
We have figured out how he can shower – with a bag over his head! Of course we don’t tie it in around his neck, but he cut it off so that it is long enough to keep the mummy bandage dry – it sits up there loosely, like a hood. To cover the abdominal incision we use waterproof tape to afix a section of the bag that was cut off. It works OK – not perfectly, but whatever dampness got inside seems to have dried quickly.
He also has figured out how to sleep with his head and shoulders elevated, as instructed. The first night he sat in a chair, but he’s been able to sleep since then. I think the Percocet helps him get to sleep, and three pillows keep his head and shoulders up.
And now, we wait for the biopsy results. I have not yet inquired why one specimen was to be examined locally while the others went to Boston. It’s a question for Dr. Boisvert when we see him on Wednesday.
So, not much to report on the melanoma front. We’ll let you know when there’s something to say. And in the meantime, I’ve bought new pillows – and toys! What fun!

To learn about Drupal 7 I’m going through Tom Geller’s course, Drupal 7 Essential Training, on Lynda.com. In the video about creating user accounts, Tom talks about the site developer’s need to understand why the site is being created in order to decide what policies to set for new users:

can anyone in the world create an account? 

can only the administrator create one? or

can people create accounts that will be activated when approved by the administrator?
He ends his tutorial by saying that it depends on whether you are creating the site because you want to publish, or because you want to invite others to comment. That made me stop and think …
This should not have been a revelation for me – I’ve done this for a living! But I did not think that part completely through before I started working on this blog-site. My first thought was to create a mechanism to tell our family and friends what’s going on with Robert’s melanoma so that we don’t have to go through the same story and answer the same questions time after time.
So far, however, more of my posts have been about learning Drupal 7. That may be because, until now, that’s been more immediate – we have been playing a waiting game on the melanoma front. That’s about to change, however, as surgery is only four days away. I suppose that means it’s time for me to tell people about this blog, and decide the sign-up will work if they want to comment. That’s a task for tomorrow …
 

The business of waiting is not one either Robert or I come by naturally – we both “just want to know already” and move on toward doing something about it. From the beginning, this melanoma thing has not cooperated with our need to move things along.
We were advised on May 14 to make an appointment with the Melanoma Clinic at the Washington Hospital Center’s cancer center. Easier said than done – after two days of calling and not hearing back, they told us we would have to wait two weeks just to get the first appointment. When you have just been informed that you (or your spouse/partner) have metastatic melanoma and you find out that the prognosis is six to nine months, two weeks seems like an eternity!
Luckily, Robert’s primary care physician, Mitch Dunn, was able to speed things up for us! Instead of waiting until May 30 for the top guy in the Melanoma Clinic to tell us what was next, Dr. Dunn ordered the PET scan that we knew would be needed. He also smoothed the way for us to get an appointment with William Sharfman at Hopkins. Washington Hospital Center also responded by getting us an appointment earlier, at least with some of the doctors there.
Things moved along pretty well — Robert had the PET scan, and we found out that the cancer has not spread (or at least is not evident big-time) to his organs or elsewhere on/in his body. Good news! And, Dr. Sharfman told us he is not certain this is metastatic melanoma – it may be a primary dermal melanoma, or maybe the primary site with regression on the surface. That we may never know which it is does not comfort me. However, the prognosis is better for the other two options, so that’s what I’m going with at this point.
The next step is surgery to take off the cancerous skin on top of his head and take out the sentinel node(s) to be biopsied. When your doctors are in demand, just scheduling the surgery can take time. We found out June 1 that it had been scheduled for June 18 at 9 a.m. So now we wait.
Very hard, all this waiting. There’s still cancer on his head. We need it gone.
And now, we have an inkling that Monday, June 18, will be another day with too much time spent waiting. The surgery is set for 9 a.m., and we have to be there four hours beforehand. They tell you that if you are late they cancel your surgery. OK, 5 a.m. it is, then …
There’s a reason to arrive early. The appointed time is for the surgeons and the procedure room (or operating room or wherever the cutting will take place). Before the surgery, Robert needs to go to Nuclear Medicine to have some radioactive dye injected and pictures taken so they’ll know which lymph node(s) to biopsy. But when the nurse called to ask him the pre-admission questions (all of which he has answered many times before), she indicated that Nuclear Medicine will see him at 7 a.m. It will be interesting to see what he needs to do between 5 a.m. and 7 a.m. — I’m sure there are papers to fill out and sign, and he’ll have to get undressed for surgery, but I’m not sure how that could take two hours. 
So, we’ll be biding our time. We haven’t yet gotten to be very good at this waiting game. But, we’ll be there at 5 a.m. on Monday, June 18. And, if there’s nothing else to do, we’ll wait!

I started to write all the sordid details about Robert’s diagnosis with melanoma because otherwise it feels like starting in the middle. I decided not to write it, though, because his own summary tells the story much better than I could. The following comes from an email that he sent on May 29 to our families and a few friends. 
This email is a terribly impersonal way of telling you how our May has gone. It’s not that Hazel or I do not want to talk to you, it’s that we know each of you will have the same questions. So I’ll try to provide the answers, at least the ones we now have.
In April I went to the dermatologist for my periodic inspection, and early in May he removed what appeared to be a sebaceous cyst from the back of my head. It appeared there as a small thing about a year ago and had grown slowly until a few months ago, when it got bigger.
He sent the thing off for a biopsy, and about a week later we learned that the lump was a melanoma. Because I have never had a mole or skin lesion that was diagnosed as a primary melanoma, never had any moles removed, and they could find no place on my skin where a melanoma had been but disappeared, this was diagnosed as metastatic melanoma.
Often, once primary melanomas are removed they don’t recur. Metastatic melanoma is another matter altogether. It’s the most aggressive form of skin cancer, far worse than the squamus cell carcinoma my mother had. For those of you who are blood relatives, that I have melanoma is a risk factor for you. Sorry.
Since then we have been to the melanoma clinics at the Washington Hospital Center and Johns Hopkins. I had a PET/CT, which showed no signs that the thing on my head has spread to any other parts of my body, or that it came from some other place. That’s encouraging, but not a cause for celebration.
The next step is to do what is known as a sentinel node biopsy and replace the skin around the site of the cyst with a graft to make sure no melanoma cells were left behind. For the biopsy they inject dye around the cyst and see which lymph node(s) it travels to. Then they remove and biopsy the node(s) to see if any melanoma cells are present. If none are found that’s very good because that is an indication the melanoma did not go beyond the cyst.
The problem is that they probably will never be able to tell whether I have primary or metastatic melanoma. Although most people who get melanoma initially have a mole or lesion on the epidermis, some people have what is called dermal melanoma, meaning the primary melanoma starts below the epidermis.
All melanoma cells look alike, whether they are primary or metastatic. Therefore, it probably will be impossible to stage mine, making arriving at a prognosis very difficult.
In any event, all agree that I need the sentinel node biopsy and plastic surgery before considering future treatment. I’m seeing the surgical oncologist later this week and probably will have the surgery in 2 or 3 weeks, depending on doctors’ schedules.
There are at least three potential courses of treatment, depending on the results of the sentinel node biopsy. If they find no melanoma in the nodes, an experimental vaccine against the disease is a possibility, followed by regular monitoring. Hopkins and several other research hospitals have trials under way. If they find melanoma cells in the lymph node, chemotherapy with interferon might be advisable. Melanoma can have two genetic mutations, and if mine is one of those the treatment might include growing antibodies that target the specific mutation.
The doctors I’ve seen seem to agree on one thing, my general health is very good. They see that as indicating my melanoma, if it is metastatic, only recently got that way. They also think my body can handle the available treatments.
Again, sorry for doing this in an email. But repeating all of this to each of you, and telling you we don’t know more, is not my idea of fun. We’ll let you know when things become clearer. As I said at the beginning, it is not that Hazel and I do not want to talk to you. We just do not want to waste everyone’s time ruminating unknowns.
P.S. If we’ve already discussed seeing you this summer we plan to be there. If we need to change our plans we’ll let you know.

So, that’s Robert’s story, in his own words.
If you were not among our relatives or friends who received the email, please don’t take that to mean anything about our relationship with you. Your email may have bounced because he didn’t have your current email address in his contact manager. It’s also possible that it got trapped in your spam filter because his subject line was “Tidings” – perhaps because he didn’t want your email listing to have an ominous subject in it, or perhaps because he just couldn’t come up with anything else. I’m willing to cut him some slack at this point, and I’m guessing you are too!

My journey to proficiency with Drupal 7 took a sharp turn today, when I decided I would add some new features to this blog. I will use the Taxonomy feature, a module in D6 but built into Core in D7, to tag posts so that people who don’t want to read about Drupal can easily avoid those posts. I created the taxonomy, which I named Blog Subjects, and added Drupal, Melanoma, and Journalism as terms. Easy – so far so good!
I was going to write about melanoma – my preoccupation these days – and start to tell our story, or at least my perspective on it. Even before I started writing, though, I thought it would be good to have the ability to tell that story, for the time being, to just the people I’m writing it for – in other words, not make it available to the entire WWW. In D6 you do that by using a module called Node Access, which gives authorized users a Grant tab allowing them to restrict access on a node-by-node basis.
Sharp turn – because the Node Access module is not yet ready for prime time in D7! I took it for granted that I would have all the functionality on this new site that I have on my other Drupal sites. I discovered that an alpha version of the module is available for D7 but it’s not recommended for production sites. Perhaps there’s a way to do this using core functions of D7, but if so it’s not intuitive.
I have two options –
·        forget about it and brave the public, or at least write for a while and see who pays attention; or
·        find a work-around that will allow me to restrict access to some subjects I address in this blog.
For the moment, I’m looking for a work-around. Soon, I’ll get around to writing about melanoma.
Now, I’m off to figure out how to apply a taxonomy to my blog posts. I hope you’ll see the results of that quest soon.