Fighting the loss of hope

It’s been several months since I took “pen to paper” so to speak. Life has been focused on so many things since July focused on dealing with mortality I just haven’t had the time or strength to blog regularly. I will be getting things going again soon, but here’s what’s been going on.

My father has been fighting late stage esophageal cancer for about six years. Having successfully beat oral cancer before, I still remember when he was subsequently diagnosed with esophageal cancer. Unfortunately the new cancer outbreak’s proximity to the one before precluded radiation and chemo was seen as a limited option. At one point, I found myself alone in a hospital room and looking at each other, I didn’t know what to say but I said “Dad I’m so sorry this is happening.” His reply? “What else can you do but move forward?”

In a nutshell, that’s been my dad’s approach to life and fighting cancer. Year after year, regardless of setback he has never wavered. Close a door in his face he’ll look for another one. No more doors – look for a window. He has refused to surrender or give in. No is never no. As he has met with each new set of doctors, they react in shock and awe that he could possibly be still alive for so long with cancer like this. But yet he has endured. Each year it seemed he’d come to the brink of no return and at the last moment some new option or treatment to try and he’d gain another year.

Then came 2009 and this summer. The cancer is spreading. Now fully engulfing his esophagus wall near the larynx, it’s breaking down like a mass of swiss cheese and an infection broke out that nearly killed him. For about two weeks he was in a hospital near death with fever hitting 103-104 and little hope of making it. The bombardment of antibiotics saved him.

However, while there a scan previously done was confirmed as showing cancer now spread out of the esophagus into the spine. At the point the last scan was taken (some time in June) there was debate about whether it was truly cancer in the bone. A new scan not only confirmed that 3 vertebrae had cancer, three weeks later 4 vertebrae were compromised and one is now 100% consumed and the spinal column is starting to be pinched. Paralysis now a risk would mean the heart/brain/everything losing power so to speak.

The decaying esophagus had lead to an infection and air bubbles indicating fluid/air escaping the esophagus. The infection spreading would have been lethal. It’s hard to relay the mental and physical strain of visiting a hospital’s Oncology wing for nearly 2 weeks 10-12 hours/day. Seeing some facing not 1, not 2, but multiple potentially lethal scenarios. Even a strong young, healthy person would be in jeopardy and have trouble combating any of them (let alone all of them).

After 10 days-he was sent home. Amazingly he’d survived again. But, he was sent home to die. Pain management and hospice care became the norm. Thank the stars for Medicare and Hospice-they have helped my parents (in particular my mom) cope with keeping his pain patches, medicine and various accessories stocked. As my mom notes, the visiting nurse will assess needs and place an order and what’s need literally arrives within hours-the SAME DAY. Who knew healthcare could work and be efficient and patient-focused? And hmmm..it’s a government run program that works…don’t get me started on that whole thing.

But in the end, this is about the quality of end of life and the decisions patients with their family make. Choosing your path out of life on your terms. Unlike the lies perpetrated by people like former Governor Sarah Palin, the so-called “death panels” hid what the point was-letting people know that they have a right to speak with a doctor and figure out what’s best to do when you’re terminal. Why is that an issue? When you’re going to die, there’s literally NOTHING that can be done to reverse your condition, why can’t you be instructed on your choices. When you live in a state that doesn’t have assisted suicide (such as in Oregon or in countries like the Netherlands), then you’re only “plan” is pain/comfort management.

This is where we are at now-carefully, incrementally increasing pain medicine dosage to make pain manageable. Unfortunately pain will grow exponentially and bodies become used to pain medicine so more is needed to cover the pain. Which means you have to fight the urge to completely battle the pain as you start down the terminal path. If you give too much up front and during the journey to the end-you won’t be able to give enough to your loved one at the end when it’s most needed.

Having been on a liquid only diet via feeding tube has severely diminished my dad’s weight. As you approach death, the body begins to shut down. One of the changes that occurs is a marked increase in sleep. Everything you do from walking around, going up the stairs drains you rapidly of energy. My dad uses up all his energy going up the stairs to shower and then must sleep for hours. At this late time, he is now sleeping nearly all day every day. Because he’s sleeping, he’s not eating regularly which is further increasing his weight loss.

It unfortunately won’t help to wake him and make him eat because one side effect of liquid diets and sleeping excessively is lack of ability to absorb food and burping/food rising up the esophagus. When you have a tumor at the head of the esophagus that’s not going to work as it could cause him to asphyxiate. As the tumor grows his airway is constricted leading to a constant wheezing and coughing. Continually phlegm is generated and he’s hacking it up another risk of choking. All of that causes him intense pain as the cancer now riddling his neck vertebrae expands his neck is essentially locked and he can’t turn his head. Pain riddles him along his neck and shoulders so much so that the high level pain patches are of little use. Ice packs are a necessity to help blunt the pain.

So now coming into October, the final grains of sand are falling through the hourglass. I wouldn’t wish this on my worst enemy. It’s something I wish the Republicans and other conservatives would think about as they continue to focus on maintaining the status quo. Our family has joined millions of others around the world who have suffered from cancer or love someone who has. It’s a club none of us wanted to join and we’re in it forever. Whatever we can do to help we will, but right now we’re focused on my parents and trying to help them out.

Throughout, as he always has, my dad has continued to stand steadfast like the white cliffs of Dover. He has been and remains a constant source of inspiration to us all.

Any help is not necessary, but greatly appreciated. The costs of hospitals, doctors, treatments, etc. is never fully covered so there is much to cope with. Any of the following will help me help my folks:

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