Waiting, waiting…

Shortly after my last post–on Sunday to be exact–the incision point around the biliary stent began to leak green fluid. Bile. Per instructions, we attached a bag to the external part of the stent. Sure enough, bile began to flow, and at a rate of over half a bag every 12 hours. I left a message with the IR doctor and followed up with a call on Monday.

Pending authorization, we had a Thursday appointment for re-evaluation. We arrived at 11:30am for our noon appointment only to be told it was for 1 pm. By 12:15, my husband was ravenous. I bought him a tuna on whole grain bread, which he devoured in a matter of minutes.

To compound frustration, when the doctor, who was late as he was involved with another procedure, finally arrived, he said it was to replace the stent, which must be blocked or dislocated going by the amount of bile my husband’s external bag was generating. Anesthesia was not an option since he’d just eaten a sandwich, so my husband, an admitted pain-o-phobe, refused to have the procedure without anesthesia, and we adjourned until this coming Tuesday.

Not to waste any time, however, we had bloodwork done immediately so there would be no hold ups.

I knew this lack of bile in the digestive tract was responsible for the uptick in diarrhea. That my husband is miserable about unavoidable accidents is to be expected. But then I found out he’d mixed up his oral chemo drugs, and was taking Xeloda, which he was not supposed to take this week, while abstaining from Tarceva, which he WAS to be taking. This may be adding to his discomfort. He’s angry and frustrated with himself. I’m discouraged.

I’ve gone back to dosing him myself so no further mistakes can be made, and emailed the oncology physician’s assistant to keep her up to date. She requested I call her on Monday.

So again, we’re waiting. Until tomorrow to touch base with the PA, and until Tuesday for the restenting. We still haven’t gotten to the IV chemo experience. I’m not looking forward to it, though he is impatient to begin it.

I also wonder where I am now in relation to my character Danny Ambrose’s situation in With Malice toward One. I’ve been with my husband since the beginning here, where she came back into Alec’s life while he was undergoing chemo, and was shocked by both the diagnosis and the toll it took on him, not to mention the change in his personality as he struggled with believing he would die while doing everything possible to live.

My husband has his moments of depression, but he’s in this for his future, which is all I can ask for now. Even when he’s angry with me for what he sees as my caring more for material objects than for his comfort (and he may be right, but those pale yellow living room couch cushions he wants to sleep on wouldn’t be washable where the lower, leather couch and his jeans are), he still rails about the things he’ll do when he’s back to normal. I see his railing as a good thing, even if I’m a bad girl. <wry g>

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.

Blind faith and a little Holmesian deduction

My husband spent last week and weekend at home, literally… in the house because he could not be far from the porcelain facilities. By Monday, he’d weakened considerably, so I called the doctor and listened as my husband explained the seriousness of his diarrhea, which had begun in the hospital and continued at home.

The oncologist gave us an appointment the next day. He was very concerned that the antibiotic ciprofloxacin my husband was taking might have left him susceptible to a bacteria called c. diff, one of the most important causes of infectious diarrhea in the U.S. It’s also extremely difficult to get rid of. It’s symptoms include watery diarrhea, up to 15 times each day; severe abdominal pain; loss of appetite, fever, blood or pus in the stool, and weight loss.

While my husband did have diarrhea several times a day, he had no pain, was eating like a man who’d just discovered food, had no fever and had no blood or pus in his stool. His weight loss had not gotten worse, either, as bad as it still was.

Checking him over in the office, the doctor was fairly sure my husband didn’t have c.diff, but had a stool sample checked to be sure. He advised us to discontinue the Cipro, which we were due to end the next day, and to begin the by-week of the oral chemo drug Xeloda that day, two days earlier than anticipated. These steps he hoped would end the diarrhea. He also persuaded my husband to stay a few hours for IV fluids, which included electrolytes, something he surely was depleted of, the doctor felt, despite being only marginally dehydrated.

I left him there and did my grocery shopping–not my usual shopping, no, but the latest list of items my husband had to have. These included gummy bears, u-bet syrups, and celery seeds. He’d been watching cooking shows and wanted to make his own bar-b-que sauce, you see. When I picked him up at the cancer center, I saw a huge difference. He was more alert, looked stronger, had a steadier step.

By Friday, though, he seemed more frail and unsteady, more lethargic, too. I bought some Gatorade as the doctor had suggested, though my husband complains that its taste and viscosity isn’t well received on his tongue.

As every mother is aware, we treat our children’s diarrhea with BRAT–banana, rice, apple sauce,and toast. However, treating an adult with with the same complaint isn’t the same–or as easy. You can’t force them to eat any of the above, so the diarrhea continued, abated only minimally, as I tried to coax him to eat bananas–in cereal, oatmeal, peanut butter sandwiches–with some success. Apple sauce was a definite no. Toast appeared, but only toasted scones, with jelly. As for rice, the best I could get into him was Rice-A-Roni to which I added extra rice.

Imodium was a mainstay, as was cottage cheese and watermelon. Yes. He’s his own worst enemy.

By the following Tuesday, we had moderate success in damming the diarrhea, I’m convinced because he finished both cottage cheese and watermelon and I refused to buy more. Also, for better or worse, he’s drinking Gatorade for its electrolytes.

We see the doctor soon. I’m eager to hear what he advises.

And no, no new chemo.

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.

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.

Do you know him?

When characters spring to life on the page–fully fleshed, breathing, with their quirks–it’s because the writer who created them understood them ahead of time, created their backstory.

For Jim Ambrose, philandering husband and one of the antagonists in With Malice towards One, I knew this much based on a conversation I had early on with Danny Ambrose, the female protagonist. His backstory says a lot about Danny, as well.

“Has Jim any family?”

“No. His folks died young in a freaky two year period. His dad had a premature heart attack in his early thirties and his mom died of complications from the flu. Jim was raised by his mother’s sister Rose, a tallish, raw-boned spinster with a will of iron.

“They were never close. The first time he ever mentioned her was when we got engaged and he supposed we’d have to invite her to the wedding, he said. Even now, I can recall the moment that day when Rose, ever quiet and prim, took me aside and said, ‘Well, my dear, he’s your responsibility now.’  Her expression crossed somewhere between haggard and dubious, as if she were exhausted from dealing with him and doubted that I was up to the challenge.

“In the first years of our marriage we went to her home in Hartford for the holidays, but there was always an air of indignation or antagonism or disapproval—from him or her…I never could quite tell who it originated with. Looking back, it might have been that they were both too strong. You know, both vying for control? Whatever the reason, it ruined the holiday and by our third Christmas Jim decided Connecticut was too far to travel from Long Island. We sent flowers instead.

“I called her every month or so, but he’d never speak to her. She died alone in the house in Hartford about seven or eight years ago, and I still wonder if I’d abrogated my responsibility—to Aunt Rose.”

Malcolm Robertson, the history professor in With Malice towards One, told me this about himself:

“I was born at the end of the second World War. My father had been home on leave, gotten Mother pregnant, then gotten killed in the last air strikes on Germany.” He offered a wry smile. “Mother, Aunt Lucy and Aunt Margaret raised me, and I’ve often wondered if it was that household of women that accounts for the fact that I’m more comfortable around the fairer sex than around men.

“And perhaps that’s why I married Em. She was pretty, and level-headed, knew how to bake like Lucy and keep her accounts like Mother. We laughed together, and I truly thought I loved her, but she wanted sex a lot more than companionship. I could ehm… perform the act, just never got a lot out of it. It was a few years before I could admit that the reason she didn’t appeal to me for sex was that I was gay. It took me another year to get over that shock, but, once I did, Emily and I parted company. She was a great girl about it, wanting me to be happy as much as she wanted a richer relationship for herself.

“I began to explore my sexuality.carefully. I had a few short-lived relationships with lovers–but only a few. After all, it’s a stupid cat that dirties in his own garden, you know. I wasn’t trying to hide my situation from school officials. I’d been up front with colleagues, especially after a few of them tried to fix me up with single women they knew. No, I simply felt it was beneath me to live a life of flagrant sex. And yes, still, because I felt more comfortable around women than men, I found the introductory parts of new relationships very difficult indeed. Still do.”

A small bit of backstory for Geoffrey Gandulf, reeve of Norburnshire for William de la Coeur Grifon in The Luck of Two Magpies.

Inseparable playmates they had been as children, Geoff thought, but manhood and rank had made them as different as servant and master. Even so, this William was the lad he had loved to whoop and run with; the young lord who had got drunk with him the morn Taddy was born; the man who arrived home when the old Earl his father died, and wept for his loss on Geoff’s shoulder. Separate and unequal they were, but linked irrevocably—master and servant and more.


And the most interesting development to come out of knowing your character’s backstory? That despite that knowledge, they can still surprise you in the scenes they appear in.

Don’tcha love epiphanies?

I haven’t blogged much over the last month. I’ve been immersed in a story I’m writing. Actually, immersed in the climax of a story, a ghost story. Now, I don’t read ghost stories, and I certainly haven’t written any, until this one.

This story, A Spectre of Miracles, is about two people, Alec Johnston and Danny Ambrose, who’ve been scarred by love and have the opportunity to love and trust again. To accept this new chance, Danny must find the courage to stand up to her fears—and her philandering husband. She must trust Alec, who’s really a stranger, divorce her antagonistic husband, and commit to moving to Edinburgh to be with Alec, who, of course, is perfect. (Don’t ya just wish?)

Having committed herself to him, she’s unstoppable, returning home to do whatever battle is necessary to win a divorce and have her happily ever after.

But sometimes, happily ever after dangles just out of reach and there’s more at stake than a wedding ring. Back in New York, Danny’s so intent on winning her divorce, she misses vital clues that all’s not well in Edinburgh. Alec has developed cancer. No therapies work and he’s dying. She flies to his side.

Hmm. Well, I’ve gotten myself into this, now how do I get out?

Enter the centuries-old ghost of a parallel story line, a cannibal spirit bent on stealing Danny’s soul. Stealing souls is how he stays viable until some member of his modern-day clan can break the curse on his soul and send him to everlasting peace.

Now, it wouldn’t be terribly believable to have this ghost just up and cure Alec, would it? No. And there lay my quandary for some time. But I’ve solved it. Yes, it involved writing a cryptic curse and its solution, and yes, I did that. And I like the solution very much. It treads the line between plausible medical cure and implausible miracle, but leans toward the supernatural. (Well it IS a ghost story!)

I can see your puzzled look. I can hear you saying, wait! I don’t understand. I need more information.

I know. But to share the details of this story further would be to give too much away, so you’ll understand if I don’t. At least, I hope you will for now.