Of patience, powerlessness and pertinacity

Our latest oncology visit was last Friday. Earlier in the week, my husband had had blood taken for testing. While the doctor didn’t go over the results verbatim or in detail, he seemed pleased with my husband’s progress and authorized resumption of the oral chemo drug Xeloda, though on a one week on–one week off basis, hoping this schedule would minimize chances for more diarrhea. So far, it’s about 75/25, non-diarrhea/diarrhea. In other words, no better or worse. A small victory, I think.

On the plus side, my husband has gained about 4 pounds. While I was thrilled at that, it’s hardly an accomplishment when weighed against the gargantuan amounts of food he eats. Also on the plus side, no c-diff.

But as I shared my worry over the c-diff with you all, a close friend told me of a cure for the life-threatening infection–a fecal transplant. I’d never heard of it before, but the procedure has been around for years, and has been used to stem the infection in humans since 1958, and in animals, for nearly a century.

I continue to observe my husband closely, as our next oncology appointment is a month away, but so far, he’s doing better. Part of the reason for his improvement is, of course, that more nutrition is bolstering his system without constant diarrhea. But part of it is also that I am, in passive rather than aggressive ways, forcing him to do more. I took away the living room couch cushions that raised the bed (den couch) he sleeps on. They were there because he said it was too difficult to gain his feet from the 18″ high den couch when nature called without warning; that the rise to 25″ made it easier to slide onto his feet. Well, that was a month ago. As physical therapists say when encouraging you to exercise, ‘use it or lose it.’  So I took back those cushions, telling him it was only for the daytime hours. He could have them at night if needed.

They weren’t needed.

I also stopped taking care of his fish tanks for him. He has to descend to the basement to do it, and though to date he hasn’t really cleaned his tanks, he IS taking care of the fish and the tank filters. He makes his own breakfast now, even driving to MacDonald’s for breakfast sandwiches and pancakes.  Occasionally he takes the dogs outside, where they play on the lawn and he sits on the front steps. He says he can’t walk around with them because there’s no handrail and those steps are difficult to climb. I must remember to tell him to take a cane.

I prod him in all of this because if I don’t, he lays around and watches TV all day–cooking shows. This too has a minor payoff. As I write, the air is filled with the scent of roasting chicken. He’s experimenting with a recipe which requires him to be on his feet and present in the kitchen for most of the time. Every now and then he scurries into the dining room and falls into a chair, evidence that his strength isn’t up to par, but he doesn’t complain and I don’t offer to take over the cooking duty for him. I try to be understanding, but I’m tired, my own arthritis leaves me to seek a chair every now and again myself, and I don’t like the feeling of being used. I also don’t like that I even think I’m being used. Small of me, yes, but I’m no saint.

I’m also not patient, I think. As this journey that began in April with his inability to eat, and my futile attempts to get food into him, progressed to the cancer diagnosis, hospitalization, and recuperation of sorts–with yet no IV chemo and no idea how long we’ll have to go on like this–I’ve just realized how frustrated I am. I feel like a marionette puppet, my strings tautly held to suspend me in mid-air. I am not in control, and have no way of gaining control. I must follow the doctor’s–and in some degree my husband’s–orders, and while I can investigate options or read about therapies, I have no ability to implement them. Nor would I. I’m no doctor.


And yet I persist.

Baby steps forward

On Monday, the IR group announced their intention to implant a third biliary stent the next day. Upon hearing that, I became suspicious, even angry. How could they have botched two previous procedures?

Well, it wasn’t them at all. It was my husband, who shifted in his hospital bed careless of the stent’s drain, and walked to the bathroom with that external drain–a bag about 5″ by 3″ tethered to the drain–swinging freely like a clock’s pendulum. As it collected the bile and pancreatic enzymes in it, it became heavier, and pulled the internal part of the stent out of place. When I told the IR doctor what I’d observed, he promised to tape this new bag to my husband’s torso. And when I told my husband that his carelessness meant a longer stay in hospital and another procedure, he took greater care with external stent.

The stent was changed on Tuesday, and on Wednesday the doctors observed the output and capped the external stent, allowing the bile and enzymes to flow internally where they aid the intestines and colon in digestion and elimination.

I was pleased to collect my husband on Thursday and bring him home. He was very weak, and unable to climb the stairs to our bedroom, and so we set him up in our den, on the couch he usually claims to watch TV. There were medications (meds) to gather, instructions to read, visiting nurse services to follow up with. He needed help rising, and sitting, and walked slowly with a walker. The slightest activity left him exhausted, though at the end of the first day home, I couldn’t say who was more tired, him or me.

By Friday’s end, we seem to have developed a pattern. (Thankfully, his appetite has returned, in no small measure due to the fact that his abdominal pain has disappeared.) I’d rise with the dogs, as usual, to go outside. Back in the house, I helped my husband to the bathroom, made breakfast for him and the dogs, administered meds, and yes, annoyed him into walking around the house on his walker. Lunch, with more meds, a bit more activity, and then dinner at home with a friend, and more pills ended his day. He slept through the night.

Today, he’s walking slowly without the aid of the walker, and even went into the basement to check on his fish tanks. Of course, this bit of exertion cost him dearly, and he sat on the basement stairs to rest for some minutes, but he climbed them himself with no aid and rested outside on the patio with lunch.

In the name of transparency, I can admit that I’m not as grouchy today as I was Thursday, when seeing him so helpless at home was a shock. Intellectually, I knew he’d be weak and need help. Practically, I was prepared to handle what ever was needed. Emotionally, I wasn’t prepared. While he was in hospital, home was my refuge from the cancer. Now, I’d brought it home with him. I needed to toughen up. Fast. Hopefully, I’m doing that.

For the next few days, I’ll have to help him to be more active. He needs physical therapy, especially as one ankle is swollen. If it continues despite his escalating activity, I’ll call the doctor.

Next Wednesday, we have an oncology appointment, and, fingers crossed, will schedule or perhaps even have his first chemo treatment.

But for now, so far, so good. Baby steps.

Sunday, day of rest?

Well, that depends on one’s physical and mental state.

My husband was moved to a telemetry room Friday afternoon because all his vitals are normal. While this is encouraging, it’s happened before and so I approach the news with wary optimism.

At this point in With Malice toward One, my female protagonist, Danny Ambrose, still has no idea her lover is ill. I can make no comparison with her.

Nor can I compare my husband with male protag Alec Johnston’s state. Alec is stoic and silent in his treatment. While my husband hasn’t even begun his chemo yet, he was really ill initially, and relied on me to be his advocate. He didn’t exactly relinquish his role in self-care, but he needed to rely heavily on me. Now that he’s on the mend from the serious infection whose complications nearly ended his life, he’s more attuned to his care, is asking questions, sometimes refusing procedures he thinks of as bill padding until their practicality is explained. I applaud that, and the fact that he involves me in the discussions.

Today,  he’ll have a pelvic CT scan to determine whether the bilial stent is well placed to do its job, as there is an entire network of various sized ducts branching through the liver. I’m hoping for a positive result. It will mean the end of the external drain and the beginning of allowing the bile and pancreatic enzymes to do their job in aiding digestion in the intestinal tract.

And now, off to the supermarket, bakery, and ices shop to fill his daily shopping list. Sunday’s day of rest? Hmm.

On and on…

It’s been a week of ups and downs. Each time I turned my mind to comparing what we were going through with the characters in With Malice toward One, some new part of my husband’s convalescence tugged at my attention.

He continued to recuperate in hospital, and on Tuesday had a picc-line inserted in his left upper arm. This would make blood drawing and, ultimately, ongoing chemo-therapy doses, easier to accomplish than repeatedly inserting an IV needle anew.

His discharge was scheduled for yesterday, Wednesday, along with nursing visits to attach further antibiotics to his picc-line and to check the bilial stent, which continued to drain externally.

But early yesterday morning he grew dizzy upon standing, very logically sat on the floor in his hospital room in case he would pass out, and fainted. He was running a fever and he was sent back to ICU.

In ICU, his doctors told me his white count was up considerably, consistent with a new infection, and that x-rays showed his colon was irritated and his intestines bloated. Why, then, I asked, did they continue to drain the biliary stent externally when the intestines needed bile and pancreatic enzymes to perform properly? The answer was that the external drainage continued while the fluids continued to be checked for infection. They were trying to identify and curb any possible origin of bacteria.

At home, while I’m running the AC for our dogs and for myself when I drag myself inside after visits and grocery runs, the dogs are beginning to show some stress. We’ve had “accidents” that normally would not occur since they’re not left alone for more than 3-4 hours without someone taking them out. They seldom leave me alone at home, following me from room to room, (even now my Weim Dash and his Westie brother Hamish are lying on my feet and Westie Sophie is begging to be held), and yesterday Hamish did the unthinkable. He lifted his leg on the corner of my bed–which is his bed too–and was promptly put in his crate on punishment. He looked as astonished as I did, I’m sure, at his action.

I admit the heat has taken its toll on all of us. My temper is much shorter than usual, and without my usual time to escape reality by writing, I’m not handling things well, as rational as I try to be. My husband, too, contributes to my stress. I can handle his medical needs, but–and I’m ashamed to admit this but promised to be honest throughout this experience–he hates hospital food and treats me like the local take out delivery service. Each day I have a list of things he’d like to eat and which I’m to furnish. Add the cost of these things–Italian, American, Chinese take outs, ices, ice cream, etc.–to the cost of daily parking, and his hospital stay easily costs an additional $200 a week out of pocket. LOL Oh, well, it’s only money, but I do feel small even noting it.

All that aside, I’m glad he’s still in hospital. It’s certainly better than having him come home and then have to go back.

Random thought here: Don’t ask me how the mind works, but yesterday as I sat in his ICU room waiting for updates, I remembered I had to call the TV/Phone providers to cancel the TV in his telemetry room on the fourth floor.

Not so random thought here: Still no chemo or radiation.

And yes, I still owe some comparison with characters. Sorry. Must head off on my hospital run.

Daring to hope anew

Yesterday afternoon, my husband had his biliary stent removed, and a newer, longer stent with greater diameter inserted. This affords greater drainage of bile from the liver and gall bladder into the duodenum. Bile aids in digestion of foods.

The difference between this stenting and last week’s stenting is the difference between night and day. He was awake and alert within an hour of the procedure, and remains alert, growing stronger daily.

Seeing this, I could relax my vigilance somewhat, though my mind turned toward his cancer and the chemo and radiation necessary to shrink his tumor. I spoke with his oncologist, and found out that my husband would stay in hospital through the weekend to be sure he is stable. I knew he had had a CT-scan while in ICU, and asked the oncologist if the mass had grown. Luckily, it has not. Another reason to be hopeful, though not to lose focus.

I also asked what kind of pancreatic cancer he has. Turns out it’s adenocarcinoma, the most common type, though his isn’t in a duct, but in the head of the pancreas. It’s also the same kind of cancer he had in his stomach 17 years ago.

Buoyed by his improvement, the doctor’s input, and some newfound knowledge, I am more determined than ever that we’ll be successful.

As I write this, I find my curiosity piqued. How did I handle my female protagonist’s determination in With Malice toward One. What other comparisons can I make with her?

But I’ll leave that for my next post. For now, I’m going to toast this tiny bit of success with a cuppa and a cookie.

Focusing hope on the light

We spent most of the day in hospital on Tuesday last week, having a stent put into my husband’s bile duct, which was being crimped shut by the growing pancreatic tumor.

Normally, this would have been done endoscopically, easy peasy the doctor said, but because he’d had stomach cancer 17  ago that rerouted the attachment of ducts to his duodenum, that option wasn’t available. It was, the doctor said, too cramped a space to perform the procedure.

But there was an alternative. It’s called interventional radiology. And so, the stent was inserted, and after 3 hours in recovery, we went home to begin 3 days of agony.

By late Friday afternoon, my husband was incoherent, staggering, unable to hold a cup to drink. By then he’d lost nearly 40 pounds, and, because he wouldn’t let me buy him jeans that fit, those were hitched precariously to his hips via a belt.

We argued over going to the hospital. Clearly, he needed treatment. He would not. It was only when I threatened to call our village’s emergency group and have them remove him on a stretcher that he agreed to let me drive him to Emergency. It was a pathetic image, this cadaverous man staggering into Emergency on my arm while I gripped his jeans in my fist to keep them from falling.

The Emergency nurse took one look at him and had him in a room within minutes. That was lucky, for he was writhing in pain almost instantly while I explained about his cancer, the stent put in days before, the pain medication he was taking. They took his temp, checked his blood pressure, heart rate, and took blood.

That proved crucial. Even as they administered dilaudin for the pain, he was given IV fluids and antibiotics for the raging infection he had. When one dose of pain meds wasn’t enough to keep him from writhing and calling out, a second was administered. That was too much for his compromised physical state to bear. His blood pressure plummeted, heart rate soared.

Before I knew it, the room was filled with doctors, nurses, med techs and machines. It was a scene from any TV medical drama series. Only missing were the cameras. The ER doctor called for a drug reversal, an EKG, and medications to slow his heart rate. This doctor, whose name I never knew, saved my husband’s life. When I have a minute to breathe, I’ll hunt him up and thank him.

By the time I left Saturday morning after 2AM, my husband was stable, and was admitted, only waiting for a bed in ICU.

At home, I left my dogs out and fell into bed, only to awaken at 6am. Force of habit. There are dogs to let out and feed even though my daughter had come to stay with the dogs for the weekend. I called the hospital and headed back.

After wending my way through corridors that would challenge rats experienced in threading mazes, I found the ICU, and my husband. They’d taken new blood samples and fluid samples from the point of the stent’s incision to culture. Both grew bacteria, different kinds–ecoli and a complex staph bacteria. Furthermore, the external drain of his bilial stent was draining massive amounts. This meant the internal end of the stent was blocked and not doing its job, but nothing could be done until the infection was under control.

He remained groggy, sleepy, hallucinating grasshoppers on the wall, seeing our dogs running in the hall. Sunday was a repeat of Saturday, with a gradual return to consciousness, but the hallucinations continued though he was aware they were hallucinations. He was alert enough to ask for his glasses and cell phone from home. Monday he was more alert and wanted foods from home, while I became more aware of his slurred speech. His antibiotics were changed to better suit the infection, and the gabapentin being administered deaden the pancreatic (and abdominal region) nerve pain was reduced.

He had another EKG to be sure the infection hadn’t damaged his heart. All is well there.

He continued to improve, and last night was moved to a telemetry room–that’s a regular room to you and me. He could get out of bed with help,now, a small but personal victory as the bathroom could be accessed.

And today, as I write this post, he will have a new stent placed–longer, with greater circumference to allow for better internal drainage of the bile duct.

I’ll know how successful this procedure was when I speak to the doctor. Fingers crossed. I remain optimistic, though as yet, he still has received no chemo or radiation.

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.

Through a portal, darkly

Where do you get your creative ideas from? Nature? People? The news?

Maybe you develop a setting from nature, and people it with quirky personalities you’ve observed in friends, acquaintances, or strangers, and turn them loose to solve a mystery or murder you heard about on the news. You even add a pet here or there to enrich the story and reinforce the characters’ humanity or lack thereof.

You, the writer, are used to calling the shots, bending the rules, creating order and success where there was only chaos and failure before. Of course, it’s fiction, so we can write an HEA (happily every after), but real life promises no such ending.

So, what if the story you wrote came to life, if the romance you wrote blossomed before your eyes? That’d be nice, huh?

But how would you react if a murder mystery attached itself to folks you knew? Or if a story you wrote about a couple facing cancer together became your life?

What would you do? What COULD you do?

I hesitate to click publish here, for I have little control over this outcome, but one thing I know: We are about to find out.