The Cost of Cancer (and Melanoma)   June 1st, 2011

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.

 

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This entry was posted on Wednesday, June 1st, 2011 at 16:58 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

28 Responses

June 1st, 2011 at 17:23
Dawn Spencer Says:

Thanks for Sharing Jake. Hope you are feeling better each day.

June 1st, 2011 at 19:33
Cynde Says:

Glad the “bag drain” will no longer a thorn in your side soon, probably not soon enough though I imagine…glad the staples are gone as well. Having been dealing with all my medical issues since December, 5 day hospital stay, PPO is not cheap, but it’s better coverage than HMO. I hope the insurance reimburses the 13K on the fast track for you.

Anything you are longing for? And I mean “treat” for yourself….something you wouldn’t just go out and get right now (besides Linda’s coffee machine ;-)

Love and hugs….C

June 1st, 2011 at 23:11
Jake Richter Says:

You pose a tough question Cynde – something I am longing for but would not go and get for myself right now… This may sound weird, but fun and colorful chef’s pants that are loose but comfortable :-)

Hugs,

Jake

June 1st, 2011 at 19:38
Denise & Teddy Says:

Once again Jake, all well said – clearly explained. Thank you for continuing to share.

Glad to hear you got to go out and about a bit. Fresh air is so uplifting. Surprised you needed tea! If weight gain is an issue, maybe the carrot cake was not a good idea.
… hugs

June 1st, 2011 at 20:58
Bill Heyman Says:

Thanks for the update, Jake! Wishing you all the best in your recovery and “unrecovery” of the added waistline!

Bill

June 1st, 2011 at 21:36
Chris Says:

Jake,
Thank you so much for this blog. I have so many questions. April of this year I had a mole removed from my back. Unfortunately it came back positive for melanoma. I had surgery performed and they removed 2 sentinel nodes from each side of my groin. The skin on my back came back negative along with the sentinel node on the left. Unfortunately, I did have a 2 millimeter spot on my right sentinel node. After meeting with the surgical oncologist, I am scared to death about this surgery he is recommending. So many side affects and uncertainties. Basically I am looking for someone to email and answer questions who has had this. I really appreciate your time and am glad to hear you are doing better.

Chris

June 1st, 2011 at 23:18
Jake Richter Says:

Chris,

Sounds like you may be going through the same thing I was just through after my lymph node came back. The process is definitely scary and uncertain, but at this point it appears to be the only protocol that offers some hope and results.

I would suggest if you have any misgivings that you get a second opinion and also do your own research to understand all the options available to you (which my research suggests are not many, at least for my melanoma).

I would be happy to continue this discussion by e-mail with you – you can reach me at Jake-at-jakestake.tv

Jake

June 1st, 2011 at 22:10
Henk Piek Says:

Miserable, desperate, resigned, physically weak… (as mentioned in your blog) All of these do not describe you, Jake, neither your lovely wife!!! I thank you for your sharing, I thank God for your strength, wisdom and goodness. Life is an intermezzo between transitions – birth and passing on – while at the same time it is a wonderful, painful, surprising, unfathomable journey and a Devine Gift. Bless you and your family.

June 1st, 2011 at 23:54
Dara Says:

Jake,
I’m so glad you have good health insurance! Having dealt personally with helping mom out after she exceeded her lifetime benefit, I know how the cost of cancer can impact family, both emotionally and financially. I admire your willingness to share your experience for the benefit of others. I wish I would have been more diligent about blogging my mis-adventure with my Uncle, so others could benefit as well…but I didn’t have the gumption. Writing is a balm; may it soothe and regenerate you as much at it continues to inspire all of us.
Love and healing to all of you! Dara

June 2nd, 2011 at 02:55
Dad Says:

Hi Jake,
two remarks re your blog. When I was courting your mom, I had 32″ around the waist. Now I have 40″. So what? Welcome to club of adult husbands. The second thing is what bothers me a bit. The adjective “indeterminate” in the first paragraph. As you know I am now 75 years old. Do I have determinate future? No. Do I worry about it and does it depress me? Also not. One day I am gone and that’s it. Why to worry about it, when you can enjoy every day before when you can eat sausages, play with your kids, wear 40″ shorts and work? In this case philosophy is better remedy than Xenox.
Love and peace in your bright mind – dad

June 2nd, 2011 at 09:01
Jake Richter Says:

Dad,

Regarding the 40″ waist pants (the waist is closer to 38″ but the swollen thigh doesn’t allow smaller waisted pants to fit), it’s not something I have to accept. It is something I can work on and change, and I will. It’s unhealthy to be too overweight. And I can control it once I can be active. What I can’t control beyond what steps I am already taking is the cancer. I can hope it will be eradicated forever, but I have no control and no definitive ability to do things that will make it go away.

As fas as “indeterminate” goes – it means merely that there is a lack of determination. I have no idea what the future will hold. Neither do you. Having an indeterminate future is not a bad thing, and I certainly will continue to live in the moment as that’s what I am and have been most comfortable with. But I won’t be wearing 40″ shorts for long. Mark my words on that :-)

Jake

June 2nd, 2011 at 05:12
Jarmila Richter Says:

Jake,

you have the right attitude in accepting, with attainable knowledge, what necessary steps are needed for your foreseeable treatment, but please don’t let your more distant horizont clout with with worries. Certainly, you have to watch your health all the time, but please remember: Any one of us might not see tomorrow, healthy or sick alike.

June 2nd, 2011 at 09:07
Jake Richter Says:

Mom,

I fully agree that we don’t know what tomorrow holds, but there’s a difference between the suddenness and lack of long term suffering from being splatted by an errant bus, and the lingering and painful (emotional and physical) course that leads to death from disease. And I think it would be worse yet in the latter case is knowing that’s what’s happening, and that you can’t do anything about it (you have a better chance of dodging the bus before being hit by it).

And while I can’t ignore the probabilities offered by my future, I’m also not spending a lot of time dwelling and brooding about those probabilities. Definitely living more in the “now”, as I have been for years (as evidenced by our family’s world travels and exploration).

Jake

June 2nd, 2011 at 11:19
Cecil Berry Says:

Jake, excellent blog entry and I am glad you are feeling better. Here’s a excellent link on skin cancer detection.

http://www.cbsnews.com/2300-204_162-10006772.html?tag=galleryBottomArea;galleryMostPop

June 2nd, 2011 at 13:51
Russ Dennis Says:

From Dakar: Marg & I are happy to hear of your progress. My waist has expanded also since several ops. There is always the next size, it helps justify that piece of cheese cake. The important thing is you can look forward to that next glass of wine, the next cup of tea, & the next hug from your loved ones. Marg & Russ Dennis

June 2nd, 2011 at 18:45
Barbara Leary Says:

Jake, I’m glad to hear that the wait for the next step is ending and sorry to hear that the insurance company operates in such an obtuse way. It is the bane of every medical providers existence; I hope your team has an NP/PA or administrative assistant that can help with the hurdles. Is there the possibility of switching to another plan when your current contract is up? The “pre-existing condition” clauses should no longer be a burden.
Hugs, Barbara

June 2nd, 2011 at 18:48
Jake Richter Says:

Barbara,

The plan we have is very good, and not unreasonably priced. It’s just a bit quirky in some areas because it deals with non-resident U.S. citizens. As far as switching goes, we would not technically be eligible for a U.S. based plans since we are not permanent U.S. residents.

And, a news blip: The drain is coming out tomorrow, not next week. Woo hoo!

Jake

June 3rd, 2011 at 13:22
elaine sculley Says:

jake that is wonderful news. keep us informed. u messmerize me with ur writing.hugs to linda and children and have a great time celebrating. hugs♥♥♥

June 3rd, 2011 at 23:03
Dwight Says:

The family just let us know you were in Boston for treatment. Drop me a line some time. There’s a couple camera shops you should know about down there if you haven’t already found them. If your interested in walkabout with cameras sometime let me know.

We’re pulling for you,
Dwight & Kristine

June 4th, 2011 at 09:28
Jake Richter Says:

Hey Dwight!

I’m just now starting to get mobile, but would definitely be interested in some camera shop exploration and some street photography at some point.

I’ll send this to you via e-mail as well.

Jake

June 5th, 2011 at 09:39
Steve Says:

Hi Man,

I’ve been following all the developments, not knowing quite what to say, but hurting and hoping with you

I had a bizarre experience yesterday. I went out for lunch and drove through the park. On my way home I saw a woman sunbathing on the front roof of her house. The light and lines were very interesting; so, on a whim, I took a couple of tasteful long shots her from across the street in which she was a minimal visual element. No big deal, no intent to publish, especially not commercially, and I probably would not even have edited it. As I was putting my gear back into the car, three big goons came out of the house looking like they wanted to beat me and confiscate my camera; so, I hopped into the car and drove off as one of them tried to step in front of the car to flag me down. I swerved, waved, and went home. Later, the police knocked at my door and interrogated me about the incident. They said they would file a report and that the detectives might need to talk to me. It was perfectly legal, but I regret if I offended her. Worse than France.

Best to you, Linda, and the kids. Take care, man.

Steven

June 5th, 2011 at 14:06
Richard Mmiller Says:

experimental drug shows promise…good luck

http://www.msnbc.msn.com/id/43285479/ns/health-cancer/

June 5th, 2011 at 15:21
Glen Reem Says:

Hi, Jake,

Good to hear of progress. The waiting for the next step, instead of ‘doing it now’, must be a bit nerve wracking.

As you gain mobility you may want to try the No Name restaurant if you haven’t already found it. On the Fish Pier for a good 50 years (I have eaten there all that time), the best seafood chowder anywhere and excellent broiled and fried seafood (and lobster!). No sign (still so at my last visit): about a third of the way along the right side of the pier building as you come from the street. They started out as a small hole in the wall serving the fishing boat crews right there at the pier until the world discovered them thus ‘no name’. Try it!!!

Back to a bit of the past: have you explored ‘Kipling as science fiction’? Or any of Kipling as good reading? Good distraction from the present world.

Best to all of you.

Glen

June 9th, 2011 at 10:09
Jake Richter Says:

Richard – thanks. That’s for Stage IV melanoma. I fortunately am not at that stage, but if I do get there, it’s good to know there will be some more options available to me.

Glen – good to hear from you! Indeed, waiting for the next step is challenging. And I have heard of the No Name restaurant, but have not been there yet. And no, I’ve not pursued Kipling as science fiction further. I seem to have enough distractions (like work) at the moment. But should that slow down… :-)

Jake

June 14th, 2011 at 21:18
Tara Smith Says:

I was going to wish you a good day tomorrow starting the new treatment but now I’m wondering/hoping that you may have already done so since the drain was removed early.
No matter what the case… I wish you nothing but comfort and strength and health.
Much love to you and Linda and the kids.
Tara

June 14th, 2011 at 21:19
Jake Richter Says:

Still scheduled for tomorrow morning. Wish me luck and minimal side effects!

Jake

June 15th, 2011 at 15:35
Judy Workman Says:

Best of luck today Jake! You all have been in my thoughts and prayers and I’m so grateful you have shared this experience with us. It not only gives us insight, it shows your courage, determination, intellect and sense of humor. It’s good, too, that you’ve been able to enjoy Boston a little. Gentle hugs from Ohio :)

August 24th, 2011 at 07:39
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