Category: Blog

Sometimes I have difficulty figuring out how to do something until I am able to articulate just what needs to be done. My challenge this time is transitioning my focus from Robert’s 10-month (so far) fight against melanoma – surgery, recovery, deciding what treatment course to follow, and clinical trial of an experimental melanoma vaccine – to a less active battle against a recurrence of the disease.
I’m still not sure how I’ll deal with the uncertainty of “watchful waiting,” which begins after the scans scheduled for the end of April – our last of seven monthly visit to Johns Hopkins University Hospital for the GVAX trial. But I’m better able to take a step forward because of a response to my last post from Paul, a melanoma survivor who took time to respond on the Melanoma Patient Information Page (MPIP) sponsored by the Melanoma Research Foundation. He was also wondering what it would be like once he finished the GVAX trial – ready to assume a good outcome, but at the same time thinking he had to be “brutally realistic” so that he would be prepared if his cancer returns.
Here’s what Paul said that helped me over the rut I was in: “I have come to think that realism and optimism are not incompatible.” Once I was able to articulate that goal, I was able to take the first step toward reaching it.
Another person who responded on the MPIP described my state of mind as feeling like the “Sword of Damocles is hanging over your head all the time.” In some ways that analogy works for me – though unlike Damocles I don’t have the choice of leaving Dionysius’s throne and going back to the simple life of a peasant to escape the sword hanging from a horsehair. After living through two months of believing that Robert’s cancer was metastatic and fearing that he had less than a year to live, the knowledge that he’s had no evidence of disease (NED) since last June has seemed like a gift. And, I am optimistic that this gift is renewable – that he will be NED again in the April scans. Perhaps that feeling is not the opulence of Dionysius’s feast, but it’s just as welcome!
The realistic side of this state of mind tells me that it’s a good idea to continue reading the MPIP regularly and to write more about melanoma research so that I’ll be up on “the latest” if Robert’s cancer recurs. I’ll spend some time building out this website, too, so that I can share what I learn with others who need to keep up on the subject as well.
It’s a start – a first step. I’ll be ready for the next one – next week, after Passover seder.
Happy holidays, all!

My life is at another crossroads, and I’m learning more about myself as I figure out where I’m going next. It’s another lesson in how we deal with uncertainty – something Robert and I do in very different ways. He is better able than I to face up to difficult situations as they occur. I am – have always been – better at dealing with challenges when I have time to think them through. And this challenge – getting on with our lives, post-melanoma vaccine trial – is a giant.
I’m sure Robert also lives with the awareness that a lesion this big and this deep is more likely to recur and/or metastasize than a tiny superficial spreading melanoma. He has said to me, more than once, that he will not live his life any differently because of that possibility. I know that if the time comes to face the beast again he’ll do so with the same resolution and determination that he did last May. I, on the other hand, need to do it differently if there’s a next time.
Actually, in retrospect, I think I did pretty well. I did not cry or go into hysterics, which I might have done pre-menopause. My version of falling apart was all inside. Outwardly, I went on with things – getting finished with client projects while I started researching and finding out everything I could absorb about melanoma. That research is so similar to what I was doing for work that I was able to do it on autopilot.
As I began to process what I was learning, I became so distracted that I needed medication to set me back on course – it was either that, or stop driving. I came up with mechanisms to make sure I was paying attention at the wheel until the medication kicked in. It was clear that I couldn’t continue to serve clients at the high quality level I was used to delivering, so I decided to suspend my business after all then-pending projects were delivered. We had a whole string of decisions to make, starting with a trip to the lawyer before Robert’s surgery to update our wills and write health care directives and durable powers of attorney.  We also put our financial house in order  and reassured ourselves that we would be fine without my business income.
When time came for surgery and healing, I was able to be pretty cool about the whole thing. I’ve done my part as a caregiver, dressing wounds and helping make sure Robert was as comfortable as possible. I’ve continued my research on melanoma so that we would have as much information as possible when it came time to make decisions about treatment.
Over the last six months my schedule has been structured around the clinical trial of the melanoma GVAX vaccine at Johns Hopkins. We have now finished those visits and are anxiously awaiting the six-month scans to look for any active cancers. We’ll have one-year follow-ups at Hopkins post-trial and periodic visits to oncologists and dermatologists here in D.C., the nerve-wracking “watchful waiting” that so many cancer survivors endure.
I plan to continue writing about melanoma research, and I’ll no doubt continue to visit the Melanoma Research Foundation’s Melanoma Patients Information Page. Perhaps now I’ll also have more time to build out and design this website and move my old business website here. I may be more open to accepting an occasional assignment for clients, but I don’t plan to reinvigorate my business to its previous level. I’ve adjusted to retirement pretty well and enjoy the freedom from deadlines.
We’ll see how well I deal with the other adjustment – living with the knowledge that melanoma is an insidious, opportunistic killer that may come back for a visit. If other survivors and/or caregivers want to share their thoughts about this, I look forward to hearing from you.

My quest for a “name” for Robert’s melanoma came to an end today when we saw Dr. Lipson at Johns Hopkins Hospital. We were there for the one-month follow-up after Robert received the last of four sets of injections with the melanoma GVAX vaccine as part of a clinical trial at Hopkins. I hope my question today about whether Robert’s melanoma has been classified as “nodular” marks the last time I ask for a name.
I’ve been playing around with this question of “what kind of melanoma is it?” for a while now, and the reason has been obvious to me. I wanted the diagnosis to be “primary dermal melanoma” because the long-term prognosis seems to be better. I didn’t want the diagnosis to be “nodular melanoma” because this kind is described so often as “the most aggressive type of melanoma.”
When we saw Dr. Timothy Wang at Hopkins in January, he summarized Robert’s case by calling it nodular melanoma. I’m sure I bristled – I may have told him that I don’t think anyone ever called it that – but I didn’t pursue it at the time because it didn’t seem germane to what we were there for (learning how to look at spots). I brought it up today with Dr. Lipson because it’s been nagging at me for nearly six weeks.
Dr. Lipson explained that the diagnosis of nodular melanoma is a pathological one based on the layers of the skin involved and the way the lesion grows. He explained that for a long time scientists thought that people with nodular melanoma didn’t have as good long-term survival rates as those with other types. Now, he said, more recent studies have shown that’s not really the case. This may be because nodular melanoma doesn’t appear to the naked eye the way traditional melanoma does, and so it gets caught later – after it’s had a chance to grow and go deep into the skin. Most important, Dr. Lipson said that clinicians don’t differentiate between nodular and other kinds of melanoma – they treat it the same way and look for the same mutations. It may be different from a diagnostic standpoint, but “from a management standpoint it doesn’t change what we do.”
One of the pathology reports said Robert’s melanoma was either nodular or metastatic. If those are the choices, obviously I’d prefer nodular, but maybe it’s time for me to just let this be. Dr. Lipson assured me that the medical folks have the same debate about whether it’s nodular or metastatic in cases like this because often the way nodular melanoma appears, it looks like it came from somewhere else in the body. But at the end of the discussion, it doesn’t really matter. They have done what they can to help Robert fight any cancer left in his body. They will continue to monitor him so that if any cells are floating around in there, either from another site or because this one was so big and so deep, they’ll catch it early enough to do something about it.
Obviously there’s a lot more going through my mind right now. I’ll try to pull those thoughts together and write about them soon. In the meantime, we’re fine – Robert appears to be healthy, and I’m in a good frame of mind. Next stop: scans at the end of April. And in the meantime, snow! Stay safe and warm, everyone.

Studies reported in the online version of Science magazine last week represent a breakthrough in researchers’ understanding of melanoma. Reading about them in Science didn’t mean much to me … so I embarked on a mission to learn. Perhaps I can write about this in a way that will help others understand, too.
First, I needed to understand more about DNA. Everyone has heard of it, and we know some of the language – genes carry the code, and chromosomes carry the genes. Younger folks probably learned more, but that was the extent of my understanding. When these reports started talking about the “dark matter,” they left me behind. Robert’s oncologist, Evan Lipson of Johns Hopkins University Hospital, helped me get started.
There are two kinds of DNA, he explained, not just the one we all know about – the genetic instructions that tell a cell what to do. This kind he likened to a manual for a stereo or for putting furniture together: “put part A into slot B.”
The actual instructions make up a very small portion of the DNA, about 1%. The other 99% is what they call dark matter – and this Dr. Lipson likened to “the instructions for the instructions.” For example, he said, “make sure you have a screwdriver and a wrench.” Although these instructions make up the bulk of the DNA, for the most part they have been dismissed in the past as “junk,” according to an article in the Harvard Gazette. All cancer-causing mutations found in the past have been in the instructions, not the dark matter.
The new studies found mutations in the “TERT promoter” area of DNA in 50 of the 70 melanomas examined. The TERT gene carries instructions for producing an enzyme, telomerase, that can make cells virtually immortal and has been found “overexpressed” in cancer cells, according to the Harvard publication. The “promoter” region is located near the gene and acts as a control point to tell the gene whether to perform its function. It’s possible that  mutations in the TERT promoter area cause the gene to over-produce the enzyme – hence the description “overexpressed.”
Other genetic mutations have been associated with melanoma. The most prevalent one is of the BRAF gene, and a lot of the therapeutic research to date has benefited the estimated 48% of metastatic melanoma patients who have tested positive for this mutation. With the TERT-promoter mutation affecting about 70% of melanoma tumors examined in the recent study, the potential is there for this finding to lead to therapies that would help even more patients with melanoma.
It’s important to note that such treatments are a long way off. But Dr. Lipson agreed with my description of what this finding means for cancer researchers – that their sandbox just got bigger. “What they have showed now is that the components of that dark matter, which until now were not very well defined, may have bearing on the way melanoma progresses and the way cells are or are not controlled by the body. It becomes another potential target, another potential site of investigation for therapeutic intervention,” he said.
We’ll take every advance we can get.
To read more:

Science Express is at http://www.sciencemag.org/content/early/recent. The studies were announced in the January 24, 2013, issue.

The Harvard Gazette article about one study, carried out by researchers at the Broad Institute of Harvard and MIT, is at http://news.harvard.edu/gazette/story/2013/01/mutations-drive-malignant-melanoma/.

A New York Times article about the Broad Institute study and the other one, by European researchers, reported in Science Express is at http://www.nytimes.com/2013/01/25/science/new-mutations-discovered-in-melanomas.html?_r=0. 

I learned a lot today during our appointment with Dr. Lipson at Johns Hopkins – so much that I can’t absorb the information and turn it around into a day-one story. I’ll write more in the next week about melanoma, but for today I’ll write about the biopsy.
Dr. Lipson seemed pleased with the chunk of tissue he took out of Robert’s leg. To explain why, he started talking about apples. This one, he said, was “not this soft, mealy, mushy thing you bite into. It’s crispy and firm.” Sometimes, he said, “you get an apple that’s like a four-day-old pear.” This one was more like a Honey Crisp apple: when you bite into it, “it comes off in one satisfying bite – you get a bite that’s self-contained.”
The good thing about a crisp biopsy is that you only need one stitch to close the wound. So, that’s all Robert got – one stitch!
We also took note that Robert’s injection sites are less reactive this time than they have been after the previous GVAX injections. This is not out of the mainstream of other patients who have completed the cycle of four injections in the trial.
Dr. Lipson likened this vaccine therapy to getting a series of allergy shots. The first time the vaccine is injected, the immune system recognizes it as a foreign substance and reacts at the injection sites, making them red. The reaction creates an army of T-cells and antibodies to fight the foreign substance if it comes along again. With the second injections, the immune system goes nuts because it knows what it’s looking for now, and hence, the swelling and itching are much worse.
Over time, the immune system gets used to the foreign substance, and with each additional injection, it cares less and less. That’s what we want to bring about with allergy shots, which generally are given over a much longer period of time.
With the GVAX, now it’s time to stop. We hope those T-cells and antibodies have done a job on any micrometastases left in Robert’s body after the surgery. Now, it’s time to get on with our lives …
That doesn’t mean we’re done at Johns Hopkins, however. We have two more follow-up visits, and the one in April will include scans to make sure there are no active tumors in Robert’s body. After that, we will watch and wait – and hope.
All for now. Call or email if you have questions.

Our trip to Baltimore yesterday was not routine because we threw in an appointment with Dr. Tim Wang, director of the Cutaneous Surgery & Oncology Unit at Johns Hopkins. What I learned was different from what I expected.
Robert’s oncologist, Dr. Evan Lipson, referred us to Dr. Wang in a previous visit when I complained that a dermatologist here in D.C. wouldn’t show me what he was seeing on Robert’s body during an exam. I understand that was an unusual request, but I want to know what to look for. Dr. Wang has a reputation for helping people learn about melanoma, so we decided to consult with him for one of Robert’s quarterly skin check-ups.
Dr. Wang might have chuckled when he read Robert’s response on the pre-appointment form to questions about why we were there. The form asked about the location on the patient’s body of any troublesome spots, and also how long they had been there. A bit frustrated, perhaps, Robert muttered, “they’ve got to be kidding,” before writing “Everywhere” and “Forever.” That about sums it up …
It also could give you an indication of how frustrated I have been trying to apply the ABCDE principles when I look at Robert’s spots, as suggested by a National Cancer Institute nurse earlier this month. How long do they think I could get him to lie still? Let someone else do that …
But that left me with, basically, nothing to go on, so I was looking forward to taking lessons from Dr. Wang. Here’s what I learned.
First, check out the local area where the primary melanoma was removed from. This is important because a melanoma that’s been resected is most likely to come back in that same area. First, Dr. Wang said, not only should I look at the graft but also run my finger over it. Look for bumps or lumps particularly along the margins of the graft and just outside the graft area. These don’t need to be colored – they could appear as flesh-colored bumps.
Next, we should check Robert’s lymph nodes regularly for enlarged nodes, the size of a marble or golf ball. There are still plenty of nodes left in his neck, and I will notice if any of them are enlarged. I’ll leave digging in his armpits and groins for him to do …
The third task is the one I had puzzled over – looking for another melanoma to pop up somewhere else on his body. Dr. Wang said about 5% of melanoma patients have a second primary, which might present as any other cutaneous melanoma – a dark, asymmetrical spot with uneven edges and uneven color. But how to find one? On people, like Robert, with lots of sun damage and freckles, “you would go crazy if you did the ABCD thing for all of them,” he said.
This is particularly true if you try to start out focusing on individual spots. The secret is, don’t stand too close! I pointed to one particular spot on Robert’s back and another on his forehead that appeared to be darker than the others. Dr. Wang suggested that I stand back and look again. I could still see those spots, but now I also noticed others that were just as dark.
A worrisome spot (“spooky,” as Dr. Wang put it) would be bigger than a freckle. It would be not only dark, but also rough and uneven, possibly bleeding. I think size is another factor – they generally are at least 6mm in diameter – though they have to start somewhere and perhaps just go unnoticed when they are smaller than ¼ inch. That’s why the docs recommend that you look once a month and take note of any spots that are evolving, or growing.
It was hard to learn what to look for when Dr. Wang didn’t see anything. But he did point out a spot on Robert’s lower leg, just above the ankle, where two freckles seem to have blended together. Seen together, they are not symmetrical and are bigger than the others. We’ll watch them, but he was pretty sure they were just that – two freckles too close to separate on sight.
GVAX – Cycle 4
We are old hats now at getting the GVAX injections. The blood is drawn first-thing – lots of it, but Patient Robert lies on a gurney now and Nurse Robert draws the blood slowly so it won’t come as such a shock to the patient’s system. While the regular lab levels are being measured to make sure there are no indications of infection or illness that would preclude continuing with the vaccine, we see Dr. Lipson and talk about Robert’s reaction to the injections while he does the physical exam and palpates lymph nodes.
Cycle 3 seems to have caused less of a reaction, and Dr. Lipson said there is no set pattern with it – some patients continue to have more severe swelling and itching, but others don’t. Robert mentioned that he believes there has been one point of consistency in his reactions – a “raging heartburn” that comes on even before we get onto I-95 to drive home. Dr. Lipson and Susan, the study nurse, seemed surprised – as though this was a new finding, if it is related. But then again, we don’t know – and probably won’t – whether it is related to the vaccine. It seems to Robert as though it’s related, and indeed it happened again yesterday, although the reaction was a bit delayed this time – just long enough for us to go to Bertha’s and eat some mussels.
Perhaps it is related to the “garlic breath,” which I found to be much more objectionable yesterday than after the first three cycles. That reaction was much more noticeable to me this time than in the past. It doesn’t seem to bother Robert at all.
Although the swelling was there this time, it seemed to be less bothersome. Robert did not complain of itching yesterday or today.
So, tomorrow morning we are off to Baltimore early for the post-Cycle 4 biopsy. Feel free to call or email if you have questions, but please don’t expect an answer until Friday.

Today we visited the front-of-the-eye ophthalmologist for a test to see if Robert can keep driving. (He can. Yay!) He hadn’t been to an eye doctor in a while because his retinal specialist retired and we didn’t get around to finding a new one yet. But Dr. Ladas did a thorough exam and looked in there for anything that didn’t belong. All is OK in the eye department!
When we were at Johns Hopkins four weeks ago, Dr. Lipson told us there was no known connection between ocular melanoma and cutaneous melanoma. Today Dr. Ladas explained that both kinds usually present as primaries, and it would be unusual to find a metastasis from one to the other (skin to eye or eye to skin). He explained further that ocular melanoma generally begins with spots in the pigmented portion of the eye, sort of like freckles. Not only did he not find melanoma, he also didn’t find anything to watch. So, no eye freckles. This is good!
Now, of course when I said “all is OK in the eye department,” that is a relative statement. Robert’s eyes have not gotten any better – but then again, we didn’t expect them to. He still has little vision in his left eye, and it’s not correctible. We’ll replace his two-year-old contact lens for his right eye with a slightly stronger one. He can see well enough to drive, and the form is ready to go to the DMV.
Tomorrow we go to Hopkins for GVAX Cycle 4. I’ll try to write again on Wednesday.

Robert said in his initial email to family and friends about his melanoma that it was a risk factor for his blood relatives. I’ve done a little studying on the subject, and my assessment of that statement (whatever THAT’s worth!) is a little different now. But the bottom line remains the same: please have a complete scan of your body, if you haven’t already, and discuss your risk factors with a dermatologist.

I decided to look into this when I found out recently that my grandmother (“Lovey,” to those of you who knew her) had ocular melanoma. I knew  that she had had one eye removed – who could forget Lovey’s glass eye?! – and I knew she had cancer in it. However, I had not heard it described as melanoma until I reviewed some of my family’s medical history with my mother a couple of weeks ago. That information raised a question for me: are my children at increased risk of contracting melanoma because they have family history on both sides?
Dr. Evan Lipson, Robert’s oncologist at Johns Hopkins, suggested that I contact researchers at the National Institutes of Health who are studying melanoma in families, so I wrote to Dr. Margaret Tucker, the National Cancer Institute’s principal investigator on familial melanoma. Research study nurse Ginny Pilcher responded by sending me the latest information on the study as well as links that would help me learn more. The research is being conducted by the NCI’s Division of Cancer Epidemiology and Genetics (DCEG). Dr. Tucker is head of the division’s Human Genetics Program.
By studying families with numerous incidences of melanoma, Dr. Tucker’s and her colleagues’ work through the years has helped identify several melanoma susceptibility genes. The researchers continue to look for other genes that are associated with melanoma, and new information has been reported within the last year based on their work. We know that Robert doesn’t have mutations of the BRAF or KIT genes that have been associated with melanoma. As far as I know his tissue hasn’t been examined for other melanoma susceptibility genes.
Even with all the recent research findings, however, I think they still don’t know enough about what causes melanoma to predict whether Allison, Loren, and Gabriel are really at increased risk just because of Robert’s illness. Their risk factors are probably no less than his – fair skin and/or lots of moles, plus a history of heavy sun exposure, can’t help them in this department. And, I’m not sure sun screens were any better when they were little than in Robert’s childhood – though they certainly can help themselves from now on by using SPF 30 sun screen EVERY DAY. (Yes, the latest research bears this out – it is not an unfounded advertisement for the sunscreen industry.) In retrospect, I’m not sure how much good Robert’s slathering with SPF 8 has done through the years. Today, we know more.
As for my “double-dose” question about Lovey’s eye: Dr. Lipson said researchers don’t yet know whether the genetic defect that leads to ocular melanoma is the same as defects that lead to cutaneous melanoma. In any case, he said his recommendations for their care – presumably the same for other family members of melanoma patients – would be the same: thorough skin exams by a dermatologist every six to 12 months. If insurance doesn’t want to cover it, I suggest going for pre-approval and appeal if they say no. In the long run, they should prefer pay for examinations twice a year rather than for treatment after diagnosis.
Nurse Ginny at the National Cancer Institute sent suggestions, based on the DCEG melanoma research program’s guidelines. For families in their study, she said, they recommend:
Perform a self-examination of your skin every month. If you note any changes in size, shape, color or borders, please notify your dermatologist. Do the skin exam in a well-lit room with a full-length mirror so you can look at both the front and back of your body. Hand-held mirrors may also be useful.  Helpful Hint: Look at your moles for Asymmetry, Borders, Color and Diameter, Evolving. You may find it helpful to write down the date of your skin self-exam, noting new moles and any changes in existing moles you have observed. Be sure to notify your health care provider as soon as possible if you discover changes or new moles that concern you.
For all individuals with a family history of melanoma, they recommend:

Examining your skin every month. If you notice any changes in your moles, specifically, if any have enlarged, developed a black area, if any moles itch, crust or begin to bleed, or if you become more aware of a mole because it “feels different,” see your health care provider.

Having a thorough skin examination by a health care provider every 6  to 12 months or more often if you notice changes.

Having an excisional biopsy (not a shave biopsy) of any moles that are changing in a suspicious manner.

Minimizing sun exposure to avoid sunburns, minimizing sun-tanning, avoiding tanning parlors, and using sunscreens with SPF 30 or greater liberally and frequently. Also, please consider the use of sun-protective clothing and sun-protective eyewear.
Since we have no knowledge of other melanomas in the family, I don’t know whether Robert’s siblings and cousins share his risk. Presumably, at least Sandy and Judy do – fair skin, red hair, lots of sailing as a kid. I know they will make their own decisions and do whatever’s right for themselves. I’m also sure they share my hope that we don’t get to the point of entering Dr. Tucker’s study.
To learn more, here are some links:
Unraveling Genetic Susceptibility to Melanomahttp://dceg.cancer.gov/newsletter/Linkage/0312_melanoma.shtml#fig1
The Genetics of Familial Melanoma: What Are We Learning?http://dceg.cancer.gov/files/Familial_Melanoma_Study_Newsletter_Fall_2011_%2810_17%29.pdf
Photos showing the ABCDE factors of melanomahttp://www.skincancer.org/skin-cancer-information/melanoma#panel1-1

Up early – easy drive, no traffic. Everything went as expected. Three down, one to go!
Robert’s appointment at Johns Hopkins for the third set of injections of the melanoma GVAX vaccine was scheduled at 8:30, so we were up and out by 7 a.m. – way too early for a retired person like me. But perhaps that’s why the traffic was so light and we ought to ask for early appointments from now on!

The rest of the visit was a breeze, too. Weight stable, temp on the low side, blood pressure 120/89 – only slightly elevated from Robert’s norm. There were no problems with the blood draw (if you want a refresher on the potential, click here), and soon we were in the exam room answering questions from Dr. Lipson. Routine questions, same old answers – the same medications, no physical complaints, no systemic reaction to the last cycle of vaccine. Robert reported that the itching at the vaccine sites came on much more quickly after the December injections than in November, when the hard and red patches at the vaccine sites developed over a few days and stuck around for a few weeks. Last month the itching was furious by the time we returned home from Hopkins.
 Apparently this reaction is normal. Dr. Lipson said, “We see changes in both the severity and  rapidity of the symptoms over time, so cycle one is just minor, cycle two is more vigorous, and cycles three and four are more variable.” Robert noted also that although the reaction at the vaccine sites was slower in the first cycle, those sites were still detectable when he had the second set of injections. The sites from the second cycle have disappeared already – only the biopsy site is still evident, and he accepts that as a “scar for life.”
To which I say: “Maybe. Maybe not.” The vaccines are part of our effort to see to it that he lives long enough for us to find out!
While the study nurse, Susan Sartorius-Mergenthaler, was injecting the vaccines, Robert had a chance to ask her some crystal-ball questions about the vaccine. He wondered what researchers thought would be the future course of therapy, assuming the vaccine receives FDA approval. One possibility, Susan said, is that patients would get an annual “booster” injection – or at some other interval.
Robert also was curious whether researchers foresee giving the initial vaccination in a single set of injections rather than over four months. Susan said she thought the therapy required too much vaccine to be administered in one session. But who knows what mechanism they might eventually devise? I’m sure they would have started out with oral polio vaccine rather than shots, if only they knew how in the beginning …
Susan also told us a little more about the study procedure – particularly the huge vials of blood they take from participants before each set of injections. She said the lab researchers save the samples and perform tests in batches rather than running all the tests on a single participant’s blood at the same time. They are collecting data over time and hope eventually to see patterns that help them understand how the body reacts to the vaccine. Also, she said, eventually Dr. Lipson will be able to share Robert’s data with us – to say whether they saw the particular immune reaction they are trying to induce.
We don’t know now whether the vaccine will be enough to prevent a recurrence of melanoma, and if Robert never has a recurrence, we won’t know for sure whether the vaccine prevented one that would have happened. All we know is that this is all we can do.
When we know more, we’ll let you know. Meanwhile, call or write if you have questions.

Something needs to be done about the medical billing mess! And no, I still don’t think a single-payer system is the only way to fix it.

It would be wrong to say that I “had to retire” just to free up enough time to deal with all the medical bills. But not spending time working does make it easier to “find time” to sort and sift through them to figure out what’s been paid and what needs to be paid. It should not be this hard. And, it doesn’t have to be.
In this post I’ll lay out what I think the problem is. I plan future posts on the subject to explore options for fixing it.
Here are some real examples from our records:

A melanoma specialist told us he sent biopsy slides to Boston University for another reading. A bill came from a laboratory, and another bill came from Boston University. The dates for these services don’t match each other or match up with any of our appointment dates. The explanations of benefits from the insurance company that appear to match up have different names from the ones on the bills.

A service had to be pre-approved, and we were asked to pay the copay of $392 on the day of service. Then we received another bill for $30.31, with no explanation of why it was more.

We received a bill dated 8/23 and paid it 9/12. The bank said the payment cleared 9/19 but the payment wasn’t reflected on the statement dated 10/8. The statement said the bill was seriously past due. Seriously?

A surgery bill arrived from one hospital for services provided at another facility. (We are grateful that this bill wasn’t sent until after the insurance payment had been received. However, the bill said the account was past due.)

Matching up all the bills from the orthopedist with the superbills from the visits and the insurance payments reflected on the Explanations of Benefits (EOBs) was a nightmare. This was the first time in years that this physician’s office has filed directly with the insurance company. We didn’t know how much we would end up owing so we held off until we got the EOB. Then, his office began adding interest to our bill before the first insurance payment was made, so the numbers never matched up.

We went in for a post-surgical visit and paid the copay. We questioned the surgeon’s cursory statement that the melanoma team at the hospital thought we should follow a “watchful waiting” regimen. Eventually the oncologist came in and explained their thinking. We were billed for a second copay because we saw both the surgeon and the oncologist.

We received a bill from a laboratory in L.A. with “address service” requested to an address in Cleveland. We haven’t been to L.A. in years and didn’t know any services had been provided there. We presume this had something to do with the slides sent to Stanford but no proof. We had already paid Stanford for the services we thought they provided. Aetna paid the bulk of the charges, so we paid the bill … 
I could have weeded some of those examples out – but the cumulative effect is part of the problem. When you have a pile of bills, all in different formats, with statement date and service date in different places on each one – and not always standing out from the clutter of other “stuff” on the bill – it’s pretty easy to think you are caught up in a conspiracy designed to make you lose your mind. It’s almost enough to make me rethink my opposition to a single-payer system …
Almost, but not quite! I also have two positive experiences to report. The first is our recent “transactions” with Johns Hopkins, which had the potential to be just as messy on the billing side as some of the ones I’ve recounted above. We’ve seen two doctors and had services provided by a number of departments at Hopkins, including CT scan and MRI. We paid copays when services were rendered at the Green Spring facility and never saw another bill from them after the insurance company paid. We’ve been to the hospital outpatient department and Cancer Center three times. So far, we’ve received a consolidated bill for the October visit showing all the services, all the insurance payments, and a total due. It’s broken down by provider and date of service, with services listed separately, insurance payments credited against each charge and a subtotal due to each provider. It allows us to pay the small amounts remaining in a single payment of the total amount due. It will be paid quickly because Hopkins offers a 10% discount if it’s paid within 30 days.
The second positive experience followed my visit to my physician for bronchitis, the first doctor visit I’ve had since I went on Medicare. Remembering what it was like when I sorted and sifted through all the bills that came for my mother-in-law, I was dreading this. But I’m pleased to report that my fears were unfounded – Medicare paid its share, and before I even got an EOB, I discovered that my Medigap policy had paid the balance.
This makes me look forward to Robert’s Medicare initiation on March 1. I’m glad to be leaving this FUBAR system behind!
I’ll think about this some more and do some serious research before I write about this subject again. Perhaps I can make my thoughts come together in some serious reflections. It’s worth a try – anything is!