As I continue to mend from the two surgeries I have had in the last two months (April 1st and May 9th), and plan for my indeterminate future, I find myself contemplating the cost of having cancer.

We typically think of “cost” as a financial issue – and certainly finances are no small matter in dealing with cancer, as I will describe below. But the cost of cancer takes its toll in a number of ways.

Among the more obvious costs are stress, depression, and confusion – and not just for the person who has been diagnosed with cancer, but also his or her family and friends. As I’ve discussed in prior posts, cancer has a very negative societal stigma – for good reason in some cases. But not all cancers are the same (in fact, few are the same) – some are deadlier than others, though if popular media were to be believed, all people with cancer must necessarily be miserable, desperate, resigned, physically weak people on the verge of expiration. That perception only adds to the actual cost of cancer, as it increases the stress, depression, and confusion.

That’s not to say that cancer should be portrayed as ordinary and innocuous, but there needs to be a more balanced approach to both educating the world about cancer in general and particular cancers in detail. My own research into melanoma as a layman has both been enlightening and terrifying. Enlightening because it is not nearly as glum a diagnosis as it’s made out to be, and terrifying because of how rapidly it can spread and how far behind other cancers, such as breast cancer, it is in terms of viable treatment options that can eradicate the melanoma cells.

The stress of simply “not knowing” is enormous, and is only compounded by the stress of how life altering the diagnosis is and how rapidly things happen after the diagnosis. Here I am, just over 10 weeks after diagnosis, with two surgeries under my belt, and a treatment plan that, assuming nothing else bad is found, will have me injecting myself and getting irradiated quite soon (more on that below as well), with my treatment lasting as long as I can handle it. On top of that, I will need to be back here in Boston for quarterly scans to detect a potential relapse (or, more optimistically, to confirm I am clear of new cancer) for years to come. Talk about a major life upheaval both for myself and my family.

Speaking of “under my belt”, one of the other costs of my cancer became evident yesterday as I realized just about none of my pants fit me anymore. Being laid up for two months with limited mobility has taken a major toll on my waistline, and the swelling in my right thigh added to that body change means I’ve gone from a 34-35” waist up to a 38-40” waist. It was distressing to have to try on a pair of cargo shorts with a 40” waist yesterday because I couldn’t get the 38” ones over my hips due to the swelling and weight gain. I have gained about 15 pounds in the last couple of months. I can only hope that as I become more mobile I can work myself back down so I can fit into my pre-cancer diagnosis clothes.

Mobility is definitely in sight, though.

I had a brilliant day yesterday as my surgeon removed the metal staples from the lymphadenectomy surgery that took place three weeks ago. He also informed me that the drain that has been the bane of my existence (and the sole source of pain when moving now) will be removed early next week. Another week with the drain will be tough, but knowing the end of the drain is coming is very encouraging and uplifting.

As a result of the date being set for the drain removal, I was then informed that my immunotherapy treatment with Sylatron (see my previous post) can start on June 15th. Simply knowing I actually have a start date for my treatment is a huge relief as well, and helps dissipate some of the stress associated with “not knowing”. I will be on a higher initial dosage of Sylatron for 8 weeks, then weaned off for a week or two before starting four to six weeks of radiation therapy, after which I will resume my Sylatron injections.

In light of all this news, I felt so good yesterday that I went on a bit of a walkabout with Linda and the kids. First to wander around nearby Charles Street, and then to go shopping for whole leaf tea and supplies to make fresh brewed ice tea, since warm weather is perfect for consuming ice tea.

I had held off on the tea buying field trip because I had heard stories about anti-oxidants potentially causing problems with cancer treatments, but my oncologist confirmed that I had no dietary restrictions (including tea and wine) during my immunotherapy – the issue with anti-oxidants applies more to particular chemotherapies (when one is being treated using toxins to kill cancer cells – not the case in immunotherapy, which is boosting of the immune system).

And while out for tea, I also tried on shorts, which lead to my weight gain revelation.

But as some stress gets alleviated, new stress crops up too. Right now that new stress is dealing with health insurance.

While we have a very good medical insurance program, it is a bit atypical with respect to prescription medicines. Most American health plans offer a prescription card, maybe with a co-pay, which can be used to cover most of the cost of prescriptions at a pharmacy. However, our plan is designed for American citizens who live outside the U.S., so instead we have to pay for our prescriptions out of pocket and then submit a claim to be reimbursed. Normally that’s not a big deal.

However Sylatron costs about – sit down for this – $13,000 a month (not a typo). And I could be on Sylatron for years. So, the last week has been spent trying to confirm that the insurance company will in fact pay for the Sylatron prescription, and to see if there would be some way to bypass the issue of having to pay for it first and then get reimbursed.

Adding to the stress is the insurance company won’t confirm it will pay for anything until it actually processes a claim, and there’s apparently no alternative to the pay-then-claim approach, so right now the hope is that they will quickly approve and pay the claims we submit for Sylatron each month without setting up any roadblocks or delays, so that we can limit ourselves to only being out of pocket for one or two months of drug costs at any one time (which we can manage fine, fortunately – it might get sticky if it stretches out to many months though). I should add that under our current policy there should be no reason they could deny coverage, but they could certainly drag their heels. Let’s hope they don’t.

On the bright side, the specialty pharmacy which stocks and sells the Sylatron takes credit cards, so we’ll be racking up lots and lots of American Express Membership Reward points for travel.

I had never quite imagined that a legal drug treatment, especially one you inject yourself, could be so expensive. Although, that said, Yervoy – the late stage melanoma drug – runs about $130,000 for four injections over a three month period. Ouch. Hopefully I will never have cause to experience that!

It is also interesting to note is that the medical bills thus far submitted by doctors and Concord Hospital on my behalf through just my first surgery in April and related follow ups is now over $45,000. I would guess that the cost of my second surgery, plus the overnight stay at the hospital and the visiting nurses visits will be at least twice that.

The lesson to be learned here is to make sure you have decent health insurance with prescription drug coverage, since cancer can happen at any time, to anyone, as I have learned. Age is not a factor for certain cancers, and if you look at melanoma in particular, many 20 and 30-somethings are being diagnosed nowadays, and without insurance, if the cancer doesn’t ruin their life, the medical bills will.

Cancer takes a toll, and the only option for real survival is to forge forth and face each new challenge as best you can, and rely on the spiritual, emotional, and physical support of your loved ones as you do battle. And make sure you’re insured too. A few thousand dollars a year for medical insurance can save you hundreds of thousands of dollars later on. This is one time I’m glad I am anal retentive about insurance in general.

For now, I expect to be making more forays on foot around Boston in the coming days and weeks, and trying to regain my former weight and physique (which wasn’t anything great to start with but definitely better than what I have now), interleaving it with various client projects. And I plan on celebrating next week when the darned drain finally comes out of my body and I will be physically whole again (disregarding the missing 21 lymph nodes and slab of skin on my thigh for the moment). And in case you’re wondering about my wide excision skin graft site, that is healing nicely too. It should be sealed up completely in a week or two.