Let me start by saying I am immensely blessed. That even though the financial consequences of my cancering extend into the foreseeable future, I get just how lucky I am. I get that the good fortune is inclusive of my financial picture. Despite the fact that my healing sabbatical led to taking on debt to cover my lost wages, and to pay medical bills, I do not regret it.

I am not alone in having debt related to cancer, nationally the number one impetus for personal bankruptcy is a health crisis. In retrospect we ought to have applied for unemployment, and food stamps, both of which we qualified for, but alas hindsight is 20/20.  Thankfully we haven’t needed to declare bankruptcy, though we are juggling the fiscal consequences of it all, including taking that healing sabbatical.  I suspect that the reduction in stress that taking a year out afforded me was the best investment we could have made – that is if you can call taking on debt an investment.

I am having a moment of clarity, the budget for a year of cancer treatments includes much more than I understood prior. It is only now that I can see how ill prepared I was to grok the fiscal realities of what was happening.  I think it is like trying to understand exponential growth, our brains can’t do it. Budgeting sucessfully as a normal working family, and budgeting during and after a cancer diagnosis are two vastly different worlds.

It doesn’t help that pricing is so arbitrary, and hidden. There are no standard costs- everything is dictated by what insurance coverage you have. There are probably nearly as many prices for each procedure as there are people who receive them. The price discounts negotiated by insurance companies change the price paid significantly person by person.

Early on, a variety of things happen all at the same time. The early diagnosis period is fraught with processing way too much information while being saturated with strong emotions. You are making decisions with many barriers to clear thinking stacked against you. Included for me was a lack of experience with the actual costs of medical procedures combined with some judgments against myself around not pulling my own weight.

In December 2013 when I was diagnosed, I had only ever had office visits for annual exams with a $25 co-pay, I had absolutely no idea, none, zippo, on what medical costs look like. We had catastrophic insurance at the time, each family member had a $7,500 deductible. After which the insurance paid 75%. It was private insurance we had been paying for around 15 years. Our monthly payment was $513 for our entire, until then, healthy family.  Because I had my babies at home, I did not even have that limited knowledge of hospital costs to apply to my situation.

After my initial week of tests for breast cancer bootcamp, we asked to meet with the financial councilor at the oncology center. I was a business woman, I helped run a small business, I thought I wasn’t afraid of numbers.  At that point I had yet to see ANY invoices. We asked to speak with her because they wanted me to start chemo immediately, if not sooner. I was concerned about the infusion cost’s impact on my deductible. Starting infusions would also require the expense of a port placement procedure.  I thought if I went ahead and waited two weeks they could go towards meeting my 2014 deductible.  I didn’t want to pay out my whole deductible, only to have to start over in two weeks. It seemed foolish.

Little did I know that my deductible was already miles behind me in the rear view mirror. The financial councilor was absolutely, completely useless. Basically all she told us was that they had payment plans. “Really! Gee, how nice is that, just like JC Penney. Sort of like signing up for a layaway plan for my health!”  I didn’t know much, but I did at least know that hospitals had payment plans.

On the other hand I knew absolutely nothing about what things costs. Estimating in my head the theoretical price of the 2 mammograms, an ultrasound, the biopsy, a breast MRI, a CT-PET scan, and 3 office visits with the oncologist and surgeon. I thought that maybe all of it might add up to around $4,000. HA HA HA.

The finance counselor had NO IDEA how much any of the services I had already received were, and worse she had NO IDEA how much an infusion would be. I think she even said “That sounds about right.” When I asked  “Do you think the infusion will be more than $1,200?”  (My first infusion billed in at $53,000.)

Perhaps because they felt that I was at risk of declining treatment, the lack of numbers was intentional. They may have suspected that if I knew just how much the infusions would be invoiced at, that it would add another tick on my lets-just-skip-chemo-list. That is the generous way to look at that scenario.

Deciding to do chemo was a difficult decision. I had not yet agreed to it when we met with that financial woman. Keep in mind that I had watched several people die of cancer at that point in my life, and it seemed to me that those who had opted out of chemo had better deaths. I was diagnosed with inoperable advanced breast cancer. They wanted to try chemo first in hopes that I could become a surgery candidate.  I was considering what it would be like, not just for myself, but also my husband, children, brothers, sisters, Mom and my community. What tipped my hand in favor of chemo was my community.  I could not let them watch me die while thinking that I could have done “something.” This impression was helped along by the several people who approached Joe and implored him to “What ever you do, make sure Iris takes the chemo.” I did not chose chemo initially because I thought it would prevent my death, I chose it because I thought it would reduce the suffering of those I loved.

When I arrived December 17th for my first infusion the rest of the pathology report had finally come back. (That pathology report was bad enough that they delayed giving me the copy I requested until after the last chemo infusion, after we knew the treatments were working.) Upon arrival to that first chemo we were directed to one of the little meeting rooms, rather than to an exam room. My oncologist came in literally bouncing “Big changes- completely new plan, turns out the final pathology shows that you are one of the 20-25% whose cancer cells over express the HER2 receptors. This means we can use the targeted therapies, Herceptin and Perjeta, for you. This is very very good news. We need to get prior authorization from your insurance company before we can start you today. Perjeta is brand new, it was just approved a few weeks ago in late October. You will be one of the first patients we have given it to, but the clinical trials are very promising, very.”  This was said very quickly, nearly in one breath, than he sprawled back in his chair a huge smile on his face and asked “Any Questions?”

This was to be the first of many miracles.  This was the first time that it seemed like my outcome might be something like a normal lifespan. This was the first time the medical staff didn’t look grim while talking to us. This was the first time the idea of taking on debt to cover a treatment plan seemed like it may be a good investment, rather than just something that would burden my family after I died. The things I didn’t know when I made that decision were immense. I still had no idea how much any of it would cost. At this point we had deliberately taken financial implications off of the table as much as possible. We shifted our focus to my getting well.

When I called my insurance company in early December they were very helpful. They suggested that we apply for Cover Oregon, part of Obama Care that might help subsidize us for a more comprehensive plan. Which we did immediately, turns out it was on the last day of the deadline. The New Year came, I had my second and third infusions. Friends offered to host a fundraiser for us. In the first week of February they did. That week in February a few huge things happened, there was a big snow storm- a rare event on the Oregon Coast – and we received our letter back from Cover Oregon. Turns out at our income level, even with both of us working, our family was eligible for Care Oregon, which is state paid healthcare. Miracle number two.

The state had been flooded with requests, they were completely overwhelmed. The new landscape post Obama Care was uber confusing for everyone involved. I spent hours and hours on the phone. Because we were already covered with our original insurance, we could not be on Care Oregon, but we could not drop that policy until we knew if my treatments would be covered by Care Oregon – including my January infusions. We could not determine if my treatments would be covered by Care Oregon until we were actually on the plan, and a prior authorization process was undertaken.

By this time I knew that my first infusion was billed at $53,000. We finally worked out all the kinks. Our New coverage would be retroactive to January 1st. We would now only be responsible for the December bills, and any and all alternative treatments we pursued, because those would not be covered. The fundraiser raised enough to cover those alternative treatments, and we set up payment plans to pay towards the December bills.

After the fundraiser, people asked if we wanted a second fundraiser, considering the first had happened while very bad weather had pretty much shut down the town.  We declined, fearing that since the proceeds of a fundraiser would count as income, it might work against us, therby making us ineligible for my miracle insurance.

We learned about resources available to us from other cancer patients. For instance the American Cancer Society gives prepaid credit cards to cover travel expenses if you have to travel for treatments. We traveled 100 miles each way everytime I did anything. Those gas cards were the only things we accessed.  I feared trying to access any of the other programs that we learned about, because I feared we would lose my insurance if we were less poor. I felt that after getting the state insurance we did not deserve any other help. That in fact we ought to leave the other resources for others who are less fortunate. We never had any more sessions with anyone about finances. If we had been able to talk to a level headed financial person we may have made some different choices.

When April 2014 came around we were finishing my last infusion, and preparing for the surgery that my treatments had made possible. We turned in a deferment for our taxes.  Immediately afterwards we asked the hospital and cancer center about forgiveness for some of our bills. They informed us that we needed an up to date tax return to do so. So we back burnered the whole thing.

I worried a lot about what people would be thinking about how we were using their money, both from the fundraiser, and because my insurance was being funded by their tax dollars. Would they begrudge my pursuing Naturopathic and Chinese medicines? What if we took a vacation, something we had only done twice in the prior 10 years – would that seem extravagant? “They needed a fundraiser, and now they can afford to fly to New Mexico?” I feared they might think. It was only at the encouragement of the couple that were most generous with us at the fundraiser that we took a trip in 2014. I am so grateful that they soothed our fears. So grateful that their generosity allowed us to travel to see my sister and two close friends in the beautiful mountains of the the Southwest. I see that taking time together as a family away from the cancer circus was incredibly beneficial.

Fast forward to December 2015, we had finally turned in our 2013 & 2014 taxes in October 2015, and finally had what we needed to apply for forgiveness of our December 2013 medical bills. Turns out we were eligible for a 100% discount on those bills. Bills that we had been making monthly payments on for two years. No retroactive reimbursement unfortunately. If we had hired someone to help us do our taxes back in April 2014, we could have saved thousands of dollars. Most of which we put on our credit card and are still paying off, with interest.

To sum it all up, Cancering is very expensive.  There are the crazy crazy oncology world bills, but there is also the missed work hours, the cost of traveling to the city for treatments, the cost of lodging and food while in the city, the cost of changing how you eat, the cost of paying someone to care for your children, the costs of specialized weird medical supplies – like over the counter stool softeners or lymphedema sleeves, the costs of keeping your house warmer while you are sick, on and on and on. There are so many sneaky ways that having cancer makes life more expensive. As an added bonus, if you use credit to keep up with all the expense, why then you have debt that does no longer counts as Medical Debt – because payments are being made to a credit card company.

Even if you have really good insurance, which I did, it is expensive. In the aftermath, living the reality of continued expensive oncology surveillance, and debt payments, I am faced with the dilemma of needing insurance, having insurance at my current income level, and needing more income to cover the debt and continued uncovered therapies I pursue, income which would then make me ineligible for my insurance.  We Are fine, really truly fine, just that we continue to be in this catch 22 of the system.  I would still have all the bills I have now, plus more if I lose my insurance, and ended up on a less comprehensive plan. Even with a second job, I would be no further ahead financially. I would however, be overworked, and very stressed and still in debt.

Perhaps for some the visits to the Chinese Medicine clinic seem like an extravagance. Likewise eating organic food. They might think that I should focus on paying off our debt, and stop being a burden on the state. That I should feel ashamed that I don’t have enough income to cover my life. That because we still have a small amount in a retirement savings account my Debt is of my own making. If we hadn’t taken that trip, If we hadn’t adopted two pet cats, who ended up having their own expensive vet bills, and special food, if I had worked the second half of 2014 after I was mostly healed up from my surgery, and only having Herceptin infusions every three weeks, things would be very different. Perhaps I don’t have debt, perhaps what I have is a case of persistent foolish choices. These are all thoughts that have surfaced in my mind.

Some of the fiscal costs of cancer are actually emotional. The consequences of the shame that makes it unexceptable to ask for help for instance. I have tended to work for low wages, in order to avoid paying federal war taxes as much as possible.  Does this mean I am a grifter? But what if the tally sheet is not just dollars? What if part of paying taxes is the assumption that in your hour of need the state will help care for you. What if there are more than one way to contribute to the wellbeing of your community and society then simply being a profitable financially solvent citizen?

There are many scenarios in which the impacts of cancer can expand to engulf any income level.  I am guessing that there are many people who live in houses much more expensive than ours, who drive a much nicer car, and have a much higher income who are now in an even worse position than I am. We did not walk into the cancer rodeo with a huge preexisting debt. I had already paid off my student loans, we mostly lived within our means. I get that by in large we are very fortunate. That I am very fortunate, and that it could have been much worse in so many ways.

Ultimately I can not turn back the clock and make different financial choices. In the end we used our credit card because in the immortal words of my friend Joseph in college, “The problem is there is no way to budget zero dollars.” I know intellectually that it is not morally wrong to not be wealthy. In fact it is probably morally wrong to be wealthy after a certain level. I see now that the emotional perceptions impacted how we attended to our finances. If I were to offer advice to anyone starting out I would say, find a financial advisor that can help you see though all the mess. If I could change the health system in this country I would instigate single payor healthcare for everyone, with automatic state paid medical leave.

phew.