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I haven't been active here at Daily Kos for a while. Life got a little rough for a while. Most things settled down, then something kind of big came up.

It started with a visit to my doctor (really a physician assistant, but she is great) after a fall last winter. I took a tumble at work going up the icy stairs outside the office. Nothing really bad, just cut up my face a bit, bruises and scrapes on my hands and legs and a strained shoulder. I went to get a checkup and to get some antibiotics for what we thought was lymph node infection. The PA prescribed a course of antibiotics which I completed. It didn't seem to help, the lump did not go away, and in fact they thought it was getting bigger.

The PA thought it was just a cyst so I was sent for an ultrasound. The results came back inconclusive. On to a CT scan to get better imaging. I was a bit concerned by then although everyone at this stage said there was better than a 95% chance that it was only a cyst or a benign lump. They scheduled me to see a specialist (ENT-Otolaryngologist) and for the first time the dreaded Cancer word was broached aloud. We had certainly been thinking it...

Now things started to get a bit more serious. Ten minutes after sitting down with the specialist they were shoving a needle that seemed to be the length of a ruler into my neck to get a biopsy, then there was a nasopharyngoscopy exam to look at my sinuses and throat.

The biopsy came back “Suspicious”, so he scheduled me for a PET scan later that week. This is the one that makes cancerous tumors glow like neon on the results imaging. Strangely, the PET scan showed nothing unusual except for the lump itself. That seems good, right?

So, then I was scheduled for surgery to remove the lump. The doctor said there were three things that could happen during the procedure. First, if the preliminary pathology report came back clean, then that’s it, sew me back up and happy days. Second, it’s “Inconclusive”, in which case the surgeon would remove some surrounding tissue, lymph nodes, the tonsils and perform a triple endoscopy to see what else may be going on. Third, it’s positive for Cancer. This is where they start with what they called a neck dissection; they remove even more tissue including muscle and other parts as well as everything included with the second option.

During the surgery, the mass was sent to pathology for a quick diagnosis to see what it was. Of course the quick examination by the pathologist was “Inconclusive”, so we went the middle route, which took the whole day. The excised tissue was sent out for a deeper look by specialty pathologists. I was down and out with the tonsillectomy; they say that apparently it’s a bit rough if you are an adult. Well, that was a bit of an understatement. Imagine gargling broken glass and hydrochloric acid at the same time. That’s almost what it was like for about two weeks.

After a week and a half of waiting, the final pathology report came back as Stage III Metastatic Squamous Neck Cancer with Occult Primary.


They think they got it all out in one water balloon-like cyst the size of a golf ball, but What If? The surgery was supposed to pinpoint exactly what type of cancer and its origin, except in all his explorations the doctor didn’t find any other cancer anywhere. That sounds great… But this mass 99% likely was a metastasis from a primary source. That source could be lurking microscopically in a couple of different places.

November through March were a time when we could hope and pretend this wasn’t serious. “Just a cyst.” Now sh*t gets real. I’m scheduled for radiation and chemotherapy over the next 6 to 8 weeks.

Prepping for this has been a bitch. I’ve had more days at doctor appointments than days at work within the past three weeks. Every single doctor on the team needs a consultation, then a planning or teaching session, then their individual preparatory procedures.

I needed several teeth taken out because apparently there could be problems with old dental work causing infections during the treatment. Due to the location, I will always have a significant risk of bone infection in the jaw from any future dental complications. This necessitates more future regular visits than the average person, and always with an onco-specialist dentist. The stitches from the oral surgeon come out on Monday.

At the radiation planning session, they hot-molded a rigid plastic mesh mask to be used for positioning my head and shoulders during the daily treatments. I had grid marks on my head for two hours later, to the amusement of my family. We’re trying to keep our sense of humor about the small things. The issue with radiating an “unknown primary” is not knowing exactly where to pinpoint the x-ray beams.They’re using Intensity-Modulated Radiation Therapy (IMRT) on a broad set of targets, in hopes they’ll hit the right spot.

I’m going to need a PEG tube- a feeding tube inserted straight through the stomach wall to the outside world, for “complete liquid nutrition product”. Apparently, the radiation treatments will cause my throat and mouth to get severe sores, blisters, and dry mouth like the Sahara, because it will kill my salivary glands forever. Dehydration and losing weight through limited ability to take in nutrition are a major concern throughout the treatment because it could compromise my immune system, leading to systemic infection, and impede my chances of an effective recovery. This is particularly an issue for this type of cancer, because of the target location.

Next, I’ll be getting a Mediport to be used weekly for the injection of the chemo drugs. I went to see the chemo people to learn what glorious effects I should expect from getting heavy drugs pumped into me. They handed me more drugs to combat the side effects of the chemo drugs. Everyone knows chemo means nausea and hair loss, among other generally unpleasant effects.  The PEG tube and Mediport are being done this Friday and then I get started with the chemo and radiation on Monday.

We’re halfway grateful to have insurance at all, but we’re sitting here with a severe case of sticker shock. Unfortunately, as far as we can tell, there’s only one plan offered by my company: what is referred to as a High Deductible Catastrophic policy. My deductible is $10,000 with an out-of-pocket max of $12,100, just $600 shy of the government-mandated amount. Here is where I wish “Obama Cancelled My Insurance” and I was “Forced” to buy Obamacare. If my company didn’t offer insurance at all, and we bought an individual policy from the Marketplace, I’d be in pretty good shape with a silver plan, with some of the premium discounted due to our family size and income. SInce the employer-sponsored plan is automatically considered to meet the minimum value, we would not be eligible for premium assistance, thus the Marketplace is far beyond our means.

I need to keep working as long as possible, even though the doctors would excuse me from work tomorrow if I said I wasn’t up to it. The FMLA should protect my job security during my time off, we hope, we trust. I have exhausted my limited amount of allowable paid Personal Time Off, most of which is taken up by mandatory company holidays. I’ll be using my elected Short Term Disability to get me through the worst weeks of the treatment. STD only pays 67% for twelve weeks total, and only kicks in when I’m off for more than seven days. It does not cover all these weeks with full days and half days off work for incessant medical appointments.

Just two words: Single payer. This is what we need to work towards. No one should be put in the position that my family and I are going to go through. Medical bills should not bankrupt anyone.

{Wife’s edit: I want to say that we won’t be bankrupt. The problem is, the way these things are done, each individual provider sends their bill and there are TONS of providers. The surgery alone had the doctor, the anesthesiologist, the lab, the other lab and the third lab for multiple opinions on the obscure pathology, the operating room, the hospital room, and more, and that was for one 24-hour period. Add in all the other specialists, diagnostics, consultations and procedures to date and upcoming. It’s nice to think you can pay a bit each month on your bill to each of them, but nobody will take less than $25-$50 per month. Add them all up and it becomes overwhelming. You’re looking at well over half the house payment. How do you choose between paying off the bills incurred while saving a beloved family member’s life, vs. paying the everyday bills as you go on with life? This is how people end up with gutted retirement plans, disastrous credit scores and medical bankruptcies. This is a major reason why I spent ten months as a volunteer with the 2012 Obama campaign, because it’s inhumane to force these sorts of decisions on people. I never expected it might happen to us.}

8:08 AM PT: Thank you all for your kind words and support. It means the world to me. Mrs. UZ and I are still weighing how to proceed with expenses and such. We have been told there are some groups that could help with some of the expenses. Trashing what little remains in my retirement fund is not an option as I am probably less than 10 years out from retirement.

Originally posted to Divide by Zero on Thu May 08, 2014 at 05:30 AM PDT.

Also republished by Motor City Kossacks and Monday Night Cancer Club.

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