(In a temporary departure from my regular blogging about cancer, I would like share an open letter I wrote this morning because this whole debt ceiling and deficit issue has me more stressed out at present than my struggle with Stage IIIC melanoma. – Jake)

Dear President Obama and Members of Congress,

As I’m sure your poll numbers are telling you, the American Public is less than impressed by your current posturing with respect to the debt crisis. And your efforts to scare monger have only made the situation worse. The only saving grace you have is that the numbers involved in the current debate are so large that the average voter’s eyes glaze over merely at the mention of all those zeroes.

This in turn has allowed you to posture with effectively meaningless numbers in the grand scheme of dealing with the outrageous amount of national debt that we, as voters who elected you to power, share as much responsibility for as you do. We were the parents who didn’t reprimand the misbehaving children, namely the Members of Congress who spent magnitudes more money than was realistically available.

The fact that our country now owes $14,300,000,000,000 to creditors is almost beyond comprehension, and the fact that President Obama and his Democratic colleagues want to increase that by another $2,400,000,000,000 for the next couple of years is audacious.

The current U.S. population, according to the U.S. Census’ Population Clock is 311,856,204. Divided into the current national debt of $14.3 trillion dollars that indicates that every man, woman, and child in the U.S. has a debt burden of $45,854.46, which is more than many people earn in a year.

And the additional $2.4 trillion increase to the debt being proposed raises that by another $7,695.85, to a total debt per capita of $53,550.31. Again, that is the amount of debt that will be on the shoulders of each individual man, woman, and child, should you all get your wish to continue to spend nearly unabated and further drive our country and our future into debt.

But the issue here should not be partisan politics. Both Republicans and Democrats are complicit in the hand waving and the empty solutions being offered to turn the debt situation around.

For example, based on estimates from the Congressional Budget Office, the 2011 budget of the United States, which covers October 2010-September 2011, covers expenditures of $3.708 trillion dollars. At the same time, revenues to the government only cover $2.228 trillion, resulting in an approximately $1.48 trillion dollar shortfall. That shortfall is called a deficit, and it results in an increase in the national debt.

Put in more down to earth terms, in the form of a personal spending example merely by lopping off eight zeros, imagine that your annual income is $22,280, but that you decide to actually spend $37,080. That means you’ve just put $14,800 of debt on your credit cards to cover the excess spending against your income! But it’s far worse than that because the amount of debt has been accumulating for decades with recent years just as bad as the present, meaning that with your annual salary of $22,280 you actually have accrued $143,000 in debt. Who in their right mind would do this as a matter of principle, year after year, with no regard for the future?

Oh, and next year, you’re planning on adding another $11,000 in debt too. Madness!

While an independent citizen has the recourse of filing for bankruptcy (which results in all sorts of other downstream financial problems, including the inability to get credit for many years), a country doesn’t really have that option, which is why taking active steps to reduce our national debt is so critical.

But here’s the rub, Mr. President and Members of Congress: None of the so-called debt reduction plans being proposed this week will reduce the debt. For example, the Boehner plan proposes to reduce government expenditures by $3 trillion dollars. Lost in the fine print is that this is over ten(!) years. That means a mere $300 billion dollars a year. And the Democratic plan isn’t any better. All these plans mean is that the annual deficit will be a tiny bit smaller, but it will still be there, and the national debt will continue to grow out of control.

You need to deal with eliminating the annual deficit, which has been running well over $1 trillion EACH YEAR. And once you stop increasing the national debt, you need to start paying the debt down as well.

That means you CANNOT be spending more than the government takes in in revenue every year, and in fact, you should only be spending part of that amount, since the balance should be going off to paying down the national debt.

What’s really required here is a proposal from someone to reduce government expenditures by $2 trillion a YEAR. We have had years of wretched excess, and now it’s time to do some extreme belt tightening to make up for those years of plentitude.

Of course, being politicians, you have lost sight of the fact that your job isn’t to be reelected, but is instead to be responsible to the interests of ALL U.S. citizens. In that, you have failed, abysmally. You have burdened us and our children with towering debt, and you just keeping increasing that burden.

And the suggestion that a Constitutional balanced budget amendment is necessary is merely smoke and mirrors. It’s like proposing a rule be put into place because you all can’t behave like responsible adults and not spend more than you’re taking in so you want someone else to tell you “No”. Never mind that you all know that such a Constitutional change will get bogged down in years of rhetoric and never acted upon.

We, the citizens of the United States, call upon you to man up (or woman up), be adults, and make some difficult and painful decisions with respect to slashing spending, entitlements, and subsidies. And yes, act with extreme self-restraint when it comes to spending.

I would suggest that many of you will not be reelected the next time an election comes up anyways based on current voter dissatisfaction, and you therefore take advantage of that scenario and just bite the bullet and kick-start a real austerity program. You won’t be popular with all the special interests out there, of course, but the rescue of this great country should not be a popularity contest, should it?

And yes, we acknowledge this won’t be easy for us as individuals either, but we’re all in this together, to the tune of at least $45,854.46 a person (and more should you raise the debt ceiling).

A few suggestions to help get you to where you really should be – namely spending within your means, with enough left over to pay down our national debt:

  1. Implement austerity measures in government, since you can best lead by example. This includes trimming back on perks, overly generous compensation packages, and collective bargaining.
  2. Reduce the bureaucratic burden on small business and individuals by ridding policies of mandates that only increase expense.
  3. Vote to reduce the salaries of all Members of Congress and the President, and their staffs, as well as reducing the expensive perks such elected officials enjoy. Share the pain that you will be spreading with our new austerity measures. Again, lead by example.
  4. Simplify the tax code. Might I suggest a 20% flat tax on all income above $20,000 for individuals with absolutely no deductions (including mortgage interest) permitted? And for business a similar flat tax after expenses? The sheer savings in bureaucratic overhead by going with such simplification would undoubtedly be enormous as well.
  5. Get rid of all non-life-critical entitlements and subsidies. Of course, every special interest group will argue that their entitlements and subsidies are critical, but perhaps this should be a time where such groups might want to find alternative sources of support instead of relying on the government. For some it might require them becoming competitive. Imagine that.
  6. Let those government institutions that are self-funded through user fees (or could be without the meddling of Congress), such as the U.S. Patent and Trademark Office, operate outside of the budget. And encourage existing institutions to come up with ways to fund their own operations so that they are not a budgetary drain.

I’m sure the creative thinkers in Congress can come up with other ways to cut costs and perhaps even find revenue from closed loopholes to deal with the elimination of the annual deficit and start reducing the national debt.

So, in closing, Mr. President and Members of Congress, we ask that you stop with the hand waving, rhetoric, and misleading proposals, and instead roll up your sleeves and make the hard decisions for which the American people of the future will thank you for, even if it means you may have give up hope of near-term reelection. The American people come before your own needs and desires.

Thank you for your time and efforts.

Sincerely,

Jake Richter
Citizen of the United States of America

 

Thanks to inspiration from a discussion with my friend Ellen Horne at WNYC, I’ve decided to try to complement my written blog with a video blog. Should you find yourself bored by reading my missives, an abridged version of this written post can be found in the video blog, accessible below.

I just returned from several days in New York City, where we dined very well at mostly excellent restaurants, explored a couple of museums, attended a wonderful musical, and met up with friends we hadn’t seen in a while (and missed several others, unfortunately).

It’s not clear that the trip would have been as enjoyable had I not had my Sylatron immunotherapy treatment for my melanoma cancer suspended due to an alarmingly low white blood cell count (see the previous post). I also took the step last Friday to try acupuncture as a way to reduce both the fatigue and appetite loss the Sylatron had induced. I believe the combination of the acupuncture and the lack of a fresh dose of the drug last week allowed me to eat my way through my New York stay.

At the same time, I found that my energy reserves were still not the best, and that I required daily naps. The realization that I might need regular blood tests during the course of my many month or even multi-year treatment with Sylatron, along with the inherent side effect of fatigue, led me to another conclusion, supported by my doctor. Namely, that my plans for an expansive three month trip to Asia and Australia this autumn would not be really viable. So we’ve unfortunately had to cancel our planned tour to Vietnam and Cambodia in November, and stopped all of the related trip planning to the other side of the world. All to be revisited at some future date, hopefully.

This decision goes deeper than might be apparent, as it is a sign of things to come, namely the inability to plan grand and lengthy things because there is so much uncertainty, even in small things, beyond a certain distance in time.

Mark Beckelman, the recently deceased mentor and friend I mentioned in my prior post who gave me hope when things seemed bleakest after my diagnosis, shared with me that he was happiest when he was living in the moment and living his life. I have come to learn that “living in the moment”, as Mark described it, is pretty much a necessity when you have a life threatening disease, especially where the treatment is fluid, affected by physiological factors as well as chance. Planning for more than three months into the future probably falls outside of “living in the moment”, so, at least for now, I will try to limit my planning to the nearer term, and in smaller chunks that can be more realistically achieved even when other factors change.

On the bright side, as we have proven to ourselves with this week’s NYC trip, I can travel closer by (this hemisphere), and will therefore, hopefully, be taking short trips around North America, including a trip to the San Francisco area in late October which will include (fingers crossed) a dinner at Thomas Keller’s The French Laundry, and visits with many friends we’ve not seen in a long time. My radiation treatment should be over by then (more fingers crossed), and hopefully I will fall into a more manageable routine with less external variability.

With respect to my treatment, I went in for a blood test today, and my white blood cell count had returned to a low but manageable 2700 cells per cubic milliliter (up from 1900 early last week), and my oncologist said I should resume the full induction dose today, not a reduced dose as I was previously told. I will get tested again in about 11 days, as part of a meeting I have scheduled with him the afternoon of August 1st.

At that meeting we will also go over the results of my next set of scans, scheduled for next Wednesday, which will hopefully show that I have not had any visible spread of my cancer to the rest of my body.

These scans, which will take place every three months for the next couple of years after detection, and then get spaced out to being semi-annual or even less frequent over time, are an event of high anxiety for every cancer patient I have spoken to or whose words I have read. They serve as a double edged sword, as the hope is that the scans will be clean, reaffirming that the cancer treatment has worked (and is working), but at the same time they could be the harbinger of really bad news, namely that visible tumors have appeared.

This will be my second set of scans since my diagnosis, and I’m anxious and hopeful that I will hear that my scans are clean (again) when I get the results back from my oncologist on August 1st.

I also meet with my radiologist next week to start planning my radiation treatment for trying to kill any cancer cells that might remain in the vicinity of my excised lymph nodes in my right groin. Assuming nothing unexpected happens between now and early August (like bad scans), this will result in more scans to create a simulation of my treatment areas as well as a body mold to hold me firmly in place while a computer controlled radiation emitter accurately zaps only those parts of me that need the treatment.

More on that in my next post, as I learn about the process.

 

This morning I had an appointment with the oncological nurse practitioner who specializes in Interferon immunotherapy treatment for melanoma.

After she looked at my blood work, I was told my liver function was spot on, but that my white blood cell and platelet counts were extremely low, at 1,900 cells per cubic milliliter (cmm) of blood.

For reference, two weeks ago I was at 2,600 cells per cmm, while the normal healthy range is between 4,500-11,000. Likewise, my platelet count was down to 72,000 per cubic milliliter, down from 117,000 two weeks ago, with a healthy range being 150,000-400,000.

The nurse indicated my white blood cell counts were in fact now so low that I needed to be very careful about exposure to any infectious agents in the next few days, because it would be difficult for me to fight off infection in my weakened state. Also, to allow my body to stabilize, I also needed to suspend use of the Sylatron for a week or so to see if my counts recovered, and if they did (and she had all expectations that they would), shifting me to the lower maintenance dose of Sylatron of 3 μg/kg at that time to avoid a repeat of this situation. There is no indication that the reduction of the dosage earlier than anticipated will negatively impact the effect of the treatment, which is a relief.

So, no Sylatron for me tomorrow.

I will have new blood tests in just over a week when I return from New York City, where we will be dropping Krystyana off at the JFK airport for a trip she’s taking with National Geographic Student Expeditions to Italy and Greece for a couple of weeks.

You may be like I was, wondering how immunotherapy treatment would result in a more vulnerable immune system. Apparently the immunotherapy drug acts as a kick-start for the body to fight against the melanoma cancer cells, but also strikes a balance in the system, reducing white blood cell counts, among other things. The remaining white bloods cells should still sufficient to tackle the cancer cells (or so it appears to be), as long as there aren’t other problems, and suspending treatment for a week is generally sufficient for the body to get counts back closer to normal.

I was told that suspending use of the immunotherapy drug with a later downward adjustment in dosage was at not unusual, and that this is typical in a majority of patients during the interferon induction phase. Nor are my symptoms in any way unusual. Learning this was comforting. I also took additional comfort that with postponing my next dose I might actually have a bit more of my appetite come back, just in time for our jaunt to New York City and some of the fine dining we are planning on doing there.

More on Mutations

The meeting this morning was also educational in that I learned that while the genetic analysis of my melanoma indicated I had an NRAS gene mutation (see my prior blog post), that was not necessarily a negative thing. As I had written, the more common BRAF mutation is what is being targeted by some of the new melanoma drugs, but I was told that BRAF mutations actually carry a much higher risk of both relapse and aggressive spread of melanoma, relative to NRAS mutations. So while BRAF mutations have the targeted drugs and NRAS don’t, it’s probably because the BRAF mutations need it more. Further, these genetically-oriented treatments are more palliative (treating the symptoms and side effects) in nature than they are curative. So, I guess, a bit of a silver lining in my genetic mutation leading to my melanoma cancer.

Scans Coming Up, Radiation Too

The other result of the morning meeting was that I am now scheduled for full scans in about two weeks. These scans will be merely a snapshot and benchmark, and are expected to be clean, as all such scans could show are sizable tumors, and not any microscopic “seeds” of melanoma that might still be in me. I will also be starting my radiation consultations at the same time, which will ultimately lead to a simulation-generation scan, and then radiation treatment. I may also end up staying on the Sylatron during radiation now, but that is only a thought, not definite.

A Bit More On Talking About Cancer

Some discussion ensued about my “Cancer Sucks” t-shirts after my last post, leading to the idea that I and my fellow melanoma patients are really “Melanoma Warriors”. So, my next quest is to get some t-shirts made up with “Melanoma Warrior” on them. If any of you has a good source for low-volume, high quality t-shirts printed with block letters, let me know.

More from me later as my situation evolves.

 

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