Part 2 of 5: Our cancer journey continues – stage IV recurrence

Photo by Alessandro Bonvini (courtesy of Flickr and Creative Commons)

Photo by Alessandro Bonvini (courtesy of Flickr and Creative Commons)

Since my wife’s cancer had gone into remission our lives had slowly returned to normal. Months passed, then she started to complain of breathing problems. The symptoms persisted so we made an appointment with her doctor to get a diagnosis. He was busy so another doctor was assigned to the case.

She initially diagnosed my wife’s symptoms as asthma and prescribed medication and a nebulizer. My wife took the medication and used the nebulizer but the symptoms continued. We made another appointment and this time an x-ray was taken. To our surprise the x-ray revealed that her left lung was almost completely filled with liquid. It was so full that it had pushed her heart out of place.

The doctor had my wife immediately admitted to the local hospital and surgery was scheduled to insert a hose, drain all the fluid and take tissue and fluid samples for off-island testing. Instruments revealed that the walls of her lungs  were coated with a gel-like substance. A diagnosis was made that she may have tuberculosis and surgery was scheduled to scrape the gel off of her lung walls. Eleven days after she was admitted to the hospital and one day before my wife was to go under the knife scrape her lungs, results came back from a Hawaii lab. Tests revealed that the cancer had returned. I eventually confirmed my worst fears. It had not only come back but this time with a vengence–it was stage IV. This is the highest possible, and worst stage rating. I remember the moment a doctor told me the news. I felt overwhelmed. It seemed like every terrible story I’d heard and experienced relating to cancer had been stopped up in my subconscious and had gushed out torrent of feelings and images. I had no idea how to deal with it all. Our story wasn’t supposed to happen this way. This kind of thing always happens to other people. Always. Now I was smacked in the face with sudden realization that,  in this case, we are the other people.

We made an appointment at a local cancer clinic to try piece together what the diagnosis meant for us and try our best get a grip on an increasingly slippery situation.

I asked the oncologist a question that is always on the mind of someone dealing with cancer: What’s your best estimate of how long she has to live?

He said based on his experience dealing with people with similar cancers at a similar stage, about five years. I knew this estimate was at best a guess and was almost worthless. There were too many variables. But I was trying to understand and flesh out this enemy and hearing even a vague estimate I found oddly comforting. It was like finding a little bit of well lit, firm ground in our dark and shifting circumstances.

My wife’s oncologists started her on what I call the chemo ladder. The patient is started at the oldest and least costly drugs and as the cancer adapts or the drugs prove ineffective she is moved up the ladder to newer, and therefore more costly drugs.

As my wife’s situation continued to evolve she was eventually prescribed Lepatanib (also known as Tykerb). The oncologist gave me the prescription and asked me to visit local pharmacies and try to find a reliable local source.

I went to our local hospital and spoke to a gentleman who sounded like he had some influence or understanding about the hospital’s sourcing of pharmaceutical drugs. He told me that he could tell me how much it would cost but it would be impossible to bring in. The hospital’s payment record had been so poor that pharmaceutical companies refused to send drugs without cash up front. He then informed me that about a one month’s supply of the drug (120 tablets) would cost about $4,500.

I may have looked calm but inside I was completely overwhelmed by this news. It would be like buying a good used car every month of the year. If there were any holes in our coverage we were sunk. And then there was the matter of the hospital not being able to source it. I took comfort in the fact that there were still several pharmacies I would approach. Surely one or more of them would be able to bring in the drug and source it at a cheaper price. What I didn’t yet realize is that the hospital would be, by far, my cheapest quote. As Dororthy said in The Wizard of Oz: “We aren’t in Kansas anymore, Toto”.

With each of the remaining five pharmacies that I approached my hope dimmed more. Every pharmacy I went to told me the same story. They could quote me a price but they couldn’t bring the drug on island because it was so new and specialized. The quotes peaked at over $9,000 a bottle. I multiplied it out over a few months and it seemed like all the money in the world. It eventually ended up costing a whopping $11,000 a bottle. I felt like our situation was very quickly sliding down a steep grease slicked hill going from bad to unbelievably bad.

It was at this dark point that in my desperation I remembered that a friend of ours had recommended that we visit a local nonprofit organization that helped cancer patients. I reasoned that surely it couldn’t make things any worse.

So my wife and I went to visit Guam Cancer Care. I’m still grateful for our friend’s referral. Their staff helped make sense of and deal with our overwhelming and chaotic situation. Without that organization’s help we could not have sourced the needed drugs and even if we could have we could not have afforded them for long. I cannot say enough good things about Guam Cancer Care and their part in getting my wife the treatment she needs.

They helped us navigate the many confusing options through my wife’s insurance company, funds from Guam Cancer Care and discounts donated by the pharmaceutical company. It would have been almost impossible for me to find my way through such a bureaucratic maze of paperwork.

If it wasn’t for their help it’s possible my wife might not be alive today.

(To be continued next post)

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