Portal opened to challenge the darkness

Two weeks ago, I asked what you’d do if a story you wrote came true.

Well, mine has. And it’s more like a nightmare than a happy dream.

Some years ago, I wrote a short story about a woman who dreamed things that came true. Two years ago, I finished a novel called With Malice toward One about a woman, Danny Ambrose, who struggles to realize her happily ever after, only to have it threatened when the love of her life, Alec Johnston, develops lung cancer.

Both stories collided with my life last month, when my husband was diagnosed with pancreatic cancer that his doctors say was caused by years of smoking. Of course, he stopped smoking in 1999, or to be precise, on the day he went into hospital for stomach cancer surgery.

But I digress.

In With Malice toward One, the female protagonist, Danae (Danny) doesn’t find out about Alec’s cancer until he’s been diagnosed and is undergoing treatment, so her story doesn’t quite mesh with mine at this stage, except that she initially hears Alec’s wheeze and cough and worries about it. My husband complained of a burning ache in his abdomen that rendered him unable to eat for the constant pain, and over the course of the two months it took to diagnose it, we–at least I–worried but didn’t think it was cancer at all, even when he began to lose drastic amounts of weight.

A June sonogram and blood work showed nothing visible and no elevated blood gases, so my peace of mind remained intact. An endoscopy in mid-June showed nothing, but our gastroenterologist advised a CT scan. That showed a mass in the head of the pancreas. He advised an endoscopic biopsy ASAP because these things were almost always cancer.

On June 30 we had that endoscopic biopsy and, though the doctor who performed it said it looked like cancer, we had to wait several more days (through the July 4 weekend) for confirmation. In my confusion and, I admit, panic, I made a false start and got an appointment within the week with a noted Manhattan oncology surgeon, but he said the mass was too large to remove, and what we needed was an oncologist for chemo and radiation. We went home to begin five hours of intensive web research to find our oncologist.

That first meeting with him put my fears to rest. He took one look at my husband’s condition–by then he’d lost 30 pounds and looked cadaverous–and gave me a list of nutritional supplements to buy, and a daily schedule for dispensation. Since eating made him sick, I was to mix whey protein with almond milk (easier to digest than regular milk), give him a therapeutic vitamin/mineral supplement called Juven to be mixed with coconut water, and administer Curamed (or curamin) and Omega fish oil that contained EPA and DHA.

A PET (positron emission tomography) Scan in early July was encouraging. No lymph nodes were involved and the mass, while growing, hadn’t spread. However, we still haven’t gotten to chemo or radiation. The growing mass has pressed on and nearly closed his liver’s bile duct. I’d noted darkened urine, yellowing skin, and pale bowel movements, sure signs of the liver under siege. A stent had to be inserted first to open the bile duct and solve this issue.

At present, we’ve just had a second CT scan to see precisely how and where the tumor has affected the bile duct. Insertion of a stent comes next.

I close here with a note regarding the process of institutionalized medicine. While I have great faith in our oncologist (he’s the director of gastric cancers AND the director of pain management of a prominent Long Island hospital and health system) and the hospitals and centers we’ve dealt with so far, it’s important to note that each step in this “hurry up and wait” process is brought to a halt by insurance authorizations and/or waiting for an opening in a hospital for a procedure or test. Perhaps because my husband has lost so much weight and looks as ill as he is, or perhaps because our doctors are so proficient at getting authorizations processed, our insurance group has been incredibly responsive so far. I’m immensely thankful for that. Also, with a bounty of really good hospitals here, the wait for a procedure suite is an indication of how many seriously ill people there are. However, my husband’s life is in the balance, and even a 24-48 hour wait seems like forever, and often, it’s actually a week. It’s frustrating for me to know I’m doing all I can to keep this train an express, but the signals and track lanes slow us down.

Up next: Hopefully, stenting.

This is the link to Pancreatica, a site that details symptoms, types, latest news, and “disinterested information” about clinical trials and “other responsible medical care in the treatment of pancreatic cancer.” I found it an interesting, useful site, and comforting as a corroborative tool in my husband’s diagnosis and care.

10 thoughts on “Portal opened to challenge the darkness

  1. Donna,

    Thanks for sharing your journey. I know it will get harder before it gets better but your steadfastness and determination will no doubt help expedite all processes. Your husband is lucky to have you as his champion. I remember well your novel and hope your fictional world and real one intersect at the good moments too. Take care.

  2. Oh, Donna, I’m so sorry to hear how your life and love is echoing your art. :( Very sad. Wishing you and your husband moments of transcendent peace and love and respite to help you keep fighting this hard thing together–and hoping the bureaucratic nightmares clear up too. – Ev

  3. Donna, Holding you and your husband in the light. You are resourceful, imaginative and brave and your husband will need all those stellar qualities as you work through this challenge together. Sending you more love to add to the considerable measure of it you already have. — Maerwydd

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