Quick Update   May 9th, 2012

From Linda…

As you may know from the last blog entry, Jake’s daily intake of steriods was
reduced at his last doctor’s appointment. We had been warned that it might cause
some weakness and we should keep in touch with the doctor with any symptoms that
might develop. Jake has recently been feeling weaker and uncoordinated so we
contacted Dr. Flaherty today to see about raising Jake’s steriod level back up to
relieve the symptoms and get Jake moving better. The doctor readily agreed that
raising the steriods back up would be a good idea. It will likely take a couple days
to see some improvements.

Jake had tried acupuncture before and found some relief from cancer treatment side
effects but we had problems locating another practitioner in Boston when his moved
away. Now that we are in Chester, Linda found an acupuncturist in nearby Hampstead.
Jake has had a couple treatments so far and is looking forward to more at the
Merrimack Valley Acupuncture. Jake has also had some reflexology massages at spa as
well as nightly leg massages from Linda to get some relief from lymphademia in his
right leg (a side effect from lymphadectomy surgery a year ago).

Our Softub spa is finally up and running with the last part, the bench surround,
arriving today. We still have not convinced Bas to give it a try, although the rest
of us have had a dip or two.

As promised, Jake has increased his daily PT in preparation for traveling. Krystyana
and Linda take turns running him through his exercises 2-3 times per day. Our travel
plans take us to Minneapolis, Indianapolis (and Columbus), and ending in Cincinnati
during the second half of May.

 

I feel that I have been a bit remiss in providing updates here on my blog, but I figure I have a good excuse – namely fatigue from my Sylatron treatment, as well as being more easily distracted by a myriad of things, perhaps again because of the treatment.

I gave myself my fourth Sylatron injection last Wednesday, marking the half-way point of the induction phase of my treatment. And while my side effects are not nearly as challenging as they could be (two of my melanoma buddies who just started their Sylatron have already experienced fevers and chills within a half day of their first injections), it’s a bit of work to overcome the side effects I do have.

Two side effects are most prevalent. Fatigue is the first, mostly taking place in the mid to late afternoon every day. The occasional nap seems to help, as does exercise in the form of long walks in and around the city. On days when I have client commitments I seem to be able to bull through the fatigue for the most part, but can’t keep that up for more than a day or two without taking a break (including naps).

The other side effect that I find perhaps more disturbing is a lack of appetite. I can eat, and I’m certainly not starving myself, but a lot of the joy I took from creating my own meals and puttering about in the kitchen seems to have dulled. Folks who know me know that food is a major passion, so to have that passion fade somewhat is emotionally distressing. Again, I can overcome it (like with the excellent home-made clam chowder I made on the 4th of July), but it takes quite a bit of effort to motivate myself. I am also able to dine out at nice restaurants, but the portions I consume are necessarily smaller than they used to be, and it takes a bit of work to get through a multi-course meal. The good news, in a way, is that I am very slowly approaching the weight I had before I was diagnosed with cancer back in March.

I have also found that the injection sites are a bit tender for the first week after an injection, and that bruising is not uncommon – both of these symptoms require that I change my injection site each week.

So far, I have had two blood tests to see how my body is reacting to the Sylatron, and these have shown a noticeable drop in my white blood cell and platelet counts, but not so low as to have me suspend treatment. I get another blood test next week along with a meeting with my oncologist to discuss my status and my upcoming radiation treatment.

One good bit of news I learned about the cost of my Sylatron treatment is that when I resume with the maintenance dose of 3μg/kg (the current induction dose is double that – 6μg/kg), the cost of the Sylatron each month will be almost half of the present $12,576.99. We are still waiting for the insurance company to even register the claim for the first month’s dose we submitted nearly four weeks ago, incidentally. Not very encouraging, although we did get a letter indicating they had precertified the drug.

Genetics

One of the things I had requested back in May was a genetic analysis of my cancer cells, in the hopes that should I have a relapse down the road, drugs which target specific genetic mutations will be available to treat my cancer. It takes about a month for the genetic testing, and I learned a couple of weeks ago that my particular genetic mutation occurs in the NRAS gene (more specifically, at Q61-182Am, with the Gln61Arg mutation).

According to one paper I have read, about 20% of all melanoma mutations are NRAS, but most of the gene-specific treatments being worked on right now are focused on mutations of the BRAF gene, which is more prevalent in melanoma. I hope, for entirely selfish reasons, that more work will be performed on NRAS mutations in the coming years, so that when I might need additional treatment, the appropriate drugs will be ready for me.

In Memoriam

The saddest and scariest thing to occur this past week was learning that Mark Beckelman had passed away as a result of his fight with melanoma. Mark was one of the leading Photoshop experts in the U.S., but more importantly, he had been an inspiration to me. I “met” Mark this past semester – he was my Photoshop for Photographers instructor at the Academy of Art University. When I expressed my concern to him this spring about not being able to complete my coursework in a timely manner due to my melanoma diagnosis, Mark volunteered that he knew my pain, intimately, as he too had gone through a similar diagnosis and subsequent surgeries back in 2006.

At a time when I knew no one else who had had melanoma and all statistics suggested it was a likely near-term death sentence, the exchanges I had with Mark gave me hope that I had at least a few more years ahead of me, at the very least. He also relayed that he had had a relapse last year and was still fighting the spread of his melanoma, and that things were not looking too good.

On July 5th, Mark succumbed to his melanoma.

Even while he was suffering from his advanced melanoma, he had time to help me come to grips with my own diagnosis. For that I will be forever grateful, and hope that I can be as strong and giving of myself as he was with me. And that doesn’t even cover what I learned from him technically.

Mark – Rest in peace, and thank you.

Lymphedema

The other situation I am dealing with is the aftermath of my lymphadenectomy (also known as a completion lymph node dissection). One of the common physical artifacts from that surgery is lymphedema, which is a swelling of the region near the place where the lymph nodes were removed due to the accumulation of lymph fluid (the fluid that drives the lymphatic system). The reason for this is that the removal of the lymph nodes ends up acting as a block or dam preventing the lymphatic fluid from taking the usual paths (which would previously have been through the lymph nodes, acting as filters).

To minimize the lymphedema I am experiencing I have to wear a compression stocking 24 hours a day on my right leg, plus exercise (walking works well for this) to keep to the lymph fluid from collecting in my leg. Additionally, I have weekly physical therapy sessions with a lymphedema therapist, who performs an hour-long lymphedema massage on me to move the pooled lymph fluid up around and past the blockage into my torso where the body can deal with it more appropriately. The therapist, Kathy, has also shown Linda how to perform the lymphedema massage, and my lovely wife has been patiently performing the massage each evening before I go to sleep, as the end of the day is when the lymph fluid pooling is at its worst (you can feel hard patches just under the skin where the fluid has accumulated).

I will mention that my lymphedema swelling has been gradually improving (getting less), to the point where the swelling in my leg is barely noticeable, but unfortunately it has not gone away entirely, and I will likely face wearing a compression stocking for the rest of my life.

One of the goals, though, is to reduce the regular swelling as much as possible before I start my radiation treatment next month, as the radiation treatment will exacerbate the existing scar tissue in my right groin, and thus lead to more blockage and therefore more lymphedema. So, the more my lymphedema can be dealt with before then, the less severe the results will be of the radiation treatment – or at least that’s the theory.

Labels

As my blog post today is a bit of potpourri, I wanted to share my thoughts on a subject that has been bugging for some time – namely labels for those with cancer, and in particular, at which point someone can be deemed to be a “cancer survivor”.

Based on my readings and conversations, I have come across four cancer classifications/terms which are applied to those with cancer:

• Cancer patient
• Cancer sufferer
• Cancer survivor
• Cancer victim

From the rather intimate perspective of someone who has been diagnosed with cancer, I find myself unsatisfied with these terms.

The term “cancer patient” is the only that perhaps best applies to me in my present situation, since I am still undergoing treatment (and will be for at least a year or more). This term is the only one that seems to have some practical relevance to what is actually going on in the life of a person undergoing cancer treatment.

“Cancer sufferer” by its very nature, suggests there is suffering involved. While the mental anguish of being diagnosed with cancer could perhaps be seen as a form of suffering, society’s use of the term suggests that the suffering should be that of physical discomfort. However, for many cancer patients, the physical suffering relates to the treatment of their cancer (such as surgery and chemotherapy), and not the cancer itself. As such, perhaps this term would be better cast as “cancer treatment sufferer”. I don’t mean to diminish the pain and anguish of people with cancer who are suffering from the actual cancer itself, but I believe that casual users of the term don’t necessarily understand the distinction between suffering from treatment and suffering from cancer.

One of my melanoma buddies recently referred to me in his missives as a “cancer survivor”, and while I appreciate the thought, I must say I do not think of myself as a cancer survivor, at least not yet. At present there is no way to know if any cancer cells remained in my body after surgery two months ago, but the probability is high that not everything was completely removed. Think of it this way – you pour fine grain salt from a height onto a smooth kitchen counter. The salt represents cancer cells. The surgery is like a large sweep of a hand and arm across that counter. What is the likelihood that a single grain of salt remains on the counter, perhaps in some corner or area where the sweeping hand didn’t come across it? If you’ve ever spent any time cleaning kitchen counters, you’ll know the probability is high that there will be at least one grain hiding out somewhere.

This is why people in my situation go through systemic cancer treatment (like I am doing with the Sylatron), and also through localized treatment (like I will be doing with my radiation treatment next month). And why I will be getting regular scans every three months for the first couple of years.

As a cancer patient, I can’t see myself labeled as a “cancer survivor” until I have hit some sort of threshold or milestone with no cancer relapse. Statistically, for at least melanoma, the most cited milestone appears to be the five-year mark, and thus, if I make it to March 2016 without a relapse of my melanoma, I will gladly start calling myself a cancer survivor at that time. Until then, I am a cancer patient (and hopefully nothing worse).

What could be worse? Being a “cancer victim”. That has a rather terminal feel to it, as it suggests that one has already succumbed to cancer. However, I have heard living cancer patients referred to as cancer victims, and I can’t imagine how painful it must be for a cancer patient or the patient’s family to have that very negative term used in relation to the living patient.

Protesting Cancer

As I have been learning over the last four months (and it seems somehow so much longer than that), cancer does not discriminate. We just don’t hear much about how prevalent cancer really is. A recent fund raising e-mail from the LIVESTRONG Foundation suggests that, based on a global survey, only 34 percent of people said they would tell their friends if they had cancer. That is truly scary.

I’m firmly of the belief that the best way to address cancer individually and as a society is to be open about it and help people realize that cancer affects us all – either via friends and family who have cancer, or when one is diagnosed with a cancer.

In that vein, I now regularly wear a t-shirt that says “Cancer Sucks” (I have five different ones), along with a black silicone wristband with the same phrase. Linda and Krystyana wear pins, necklaces, and bracelets that feature black cancer ribbons with the word “hope” to share their support. I should add that black is the color for melanoma, and that someone somewhere came up with a color coding for each major type of cancer (hence the pink ribbon for breast cancer – see http://www.choosehope.com/category/by-cancer-color-cancer-type for more examples).

The idea with the “Cancer Sucks” t-shirts, the jewelry, and the wristbands is to both increase awareness that cancer can affect us all as well as a start a conversation with others who want to express their frustration and angst regarding cancer, and show support for friends and family who have been diagnosed with cancer.

I have had dozens of strangers come up to me in the last couple of weeks to tell me that they agree with my shirt, and some even ask where I got my shirt from so they could get their own. In case you’re interested, that happens to be the web site Choose Hope (http://www.choosehope.com), which donates a part of its proceeds to cancer research.

On that note, let me leave you with a photo of my t-shirt, worn yesterday on Boston’s Beacon Hill:

One of my many new "Cancer Sucks" t-shirts

One of my many new "Cancer Sucks" t-shirts

 

When I was first told I had malignant melanoma, one of the leading questions bouncing around my dazed brain was “why me?” And when questions like that start invading one’s consciousness, the answers are rarely satisfactory, and are, in fact, frequently disturbing.

You feel guilt for having somehow contracted a deadly disease, but can’t figure out how you might have contracted it – was it that sunburn in Costa Rica in September 2008? Or too much time spent at high altitude in airplanes? Maybe something we ate at some point? Or too much wine? Or not enough? Could it be our low carb lifestyle? Or did that actually prevent the melanoma from cropping up earlier?

You wonder what you could have done differently so that the diagnosis had come back clean instead of laden with cancer. You wonder if you could have acted sooner to somehow head it off at the pass. You worry that since you got the disease, your loved ones might be susceptible to a similar diagnosis. And, if you’re a person of faith, you might view your diagnosis as some sort of spiritual test.

And this series of “why me?” and “what if?” questions can drive you crazy, stress you out, and depress you – none of which will help one overcome the disease, and could make it even worse, if the theories of mental attitude affecting physical wellness are to be believed (and I do believe them).

After dwelling on these thoughts for a while, and doing some research, which confirmed that even the really smart medical people really don’t know exactly why some people get melanoma and others don’t, I came to the conclusion that the reason I ended up with cancer boiled down to chaos theory, or, in other words, “shit happens” (with apologies to my kids for using the “s” word).

As I have been learning, cancer is the result of cell mutation, which, in simple terms, results in particular cells growing out of control either because they have mutated in a way that accelerates cellular reproduction (mutated oncogenes) or disables the cellular controls that prevent such rapid reproduction (mutated anti-oncogenes). Dr. Siddhartha Mukherjee, author of “The Emperor of All Maladies: A Biography of Cancer” equates these mutations to the controls of a vehicle: the accelerator pedal being pressed all the way down (the mutated oncogenes) or the brake pedal failing (the mutated anti-oncogenes).

In the case of melanoma, the type of cell that has gone nuts – at least initially – is a melanocyte, a pigmented skin cell, hence the classification of melanoma as a skin cancer and warnings by folks like the World Health Organization warning about sun exposure being the cause of skin cancers including melanoma.

However, according to a friend in the field of cancer treatment research (thanks David S.), the mutation can come from any of a number of causes, including, but not limited to, sun exposure, chemicals, or simply the build up of random errors that occur during normal cell division. So, in other words, we’re back to “shit happens”.

In a way, the idea that my cancer was a random, unpredictable occurrence is a bit of a relief, as it allows me to not have to worry about the past, and instead focus on the future.

And that future involves surgery next Monday, and then some sort of treatment – most likely immunotherapy – starting at some point in June.

The surgery I am having on Monday morning is called a “lymphadenectomy”, and involves the removal of all of the lymph nodes in the area where my sentinel lymph node was removed, namely in the region of my right groin. More specifically, I’m having an inguinal lymphadenectomy, “inguinal” referring to the groin and lowest lateral regions of the abdomen (per Merriam-Webster’s dictionary). The surgery will take between two and three hours, and will result in several incisions ranging from the middle/upper part of my right thigh up to my lower abdomen – probably an area about 12-18 inches high in total.

The reason for the lymphadenectomy is that it is believed to be a way to surgically treat cancer which has spread to the lymph nodes but has not metastasized beyond them. The lymph nodes appear to act as a dam of sorts to the cancer cells, collecting and preventing them from easily spreading in the rest of the body, but at some point they can get overwhelmed and then the cancer cells will spread to invade organs and other parts of the body. So, by removing the affected lymph nodes surgically, the hope is that it will also remove the cancerous cells (see, e.g., WebMD). There will be a biopsy performed on all the lymph nodes removed during the surgery to determine how wide spread (if at all) the cancer was in my lymphatic system.

As a bit of background, the lymphatic system is part of a body’s immune system, including the fighting of bacteria, viruses, and even cancerous cells. The clear fluid carried in the lymphatic system is called “lymph”, and lymph nodes act as a filter against foreign materials. There is a good overview of what the lymphatic system is and does here. A diagram from that link showing the lymphatic system and the lymph nodes can be seen below:

(From http://penile-cancer.ca/pc/lymphadenectomy.htm)

Of course, no externally induced physical changes to a biological organism can be made without some sort of side effects, and for lymphadenectomies, the side effects will likely include swelling from the build-up of lymph, now that the lymphatic system has been disrupted by the removal of all the lymph nodes in a given region. This swelling may or may not be temporary, and is called lymphedema. Dealing with the swelling and lymphedema in a leg would require the use of a pressure stocking. Also, during the recovery period after the lymphadenectomy, until the body has adjusted to the lack of particular lymph nodes, will also require the use of a drain to remove excess fluid build-up. The drain I was shown during my initial appointment to discuss the lymphadenectomy was about the size and shape of a hand grenade.

I expect to be kept in the hospital for a couple of days – probably getting released on Wednesday, and already have a follow-up appointment scheduled at the end of the month, followed by meetings with the clinical staff at the hospital to determine my adjuvant treatment, which will likely involve immunotherapy. Unlike chemotherapy, which involves using cellular toxins to try and kill cancer cells in the body, immunotherapy tries to boost the body’s immune system to help attack any cancer cells remaining in the body after surgical removal of cancerous bits (lymph nodes in my case).

On a separate note, the skin graft on my wide excision has, for the most part, failed to bond. Blood formed under part of the skin graft and prevented it from grafting properly. The downside to this diagnosis is that it will take longer for the excision to heal, and I will have a noticeable scar on my right thigh, but both of those items are, in my view, not significant in comparison to the greater challenges I face in fighting my cancer.