The phone call

I got the call today that I’ve been dreading for a year or more.

My main client called and said he’s been ordered to cut back expenses even further. They’ve had to let people go, and they can no longer afford me. It’s a very sad state of affairs. I really like the gig, I’ve done good work with them, and of course, I need to keep working.

The timing really sucks!

Toothache

Last week sometime I started feeling a strange sensation around one of my teeth. It’s in a part of my mouth that my dentist has been keeping an eye on, since some of the work is pretty old and can potentially break down. The new sensation isn’t exactly pain, not really a toothache, but the gum and lip in front of that tooth are numb. It feels like Novocain wearing off. It’s pretty uncomfortable, and since I don’t have much feeling there, I tend to bite it while I’m eating, making my lip sore and swollen.

I went to the dentist first thing Monday morning so he could fix me up. Only problem, he couldn’t find anything wrong! The tooth in question already has a root canal, and there are no signs of cracks or abscess. My description sounds to him like there’s something impinging on a main nerve, but he couldn’t see anything in the x-rays and didn’t want to just start digging around.

We called my doctor, who’s now puzzling over it too. Can it be from new lesions in my neck or spine? She didn’t see anything on the PET scan that would cause this, but she can’t explain it either. So she’s going to schedule me for an MRI of my head and neck to try to get more information: yet another medical procedure to attend to.

Life is hard

Many of you have contacted me in the last three months since my last blog post. I’ve gotten emails and phone calls asking tentatively if I’m all right.

I appreciate the concern shown by you, my dear friends. I feel guilty for having set up an expectation with this blog and then abruptly abandoning it when life got hard for me. I haven’t wanted to talk about what seems to me to be ugly and sordid. My reputation is sullied in my own eyes, and I haven’t wanted to share that. I don’t feel good about myself. I’ve been depressed.

To set the record straight, my health is good. I struggled with side effects of the immunotherapy through the summer. The itching of early July faded into pancreatitis that lasted about six weeks. Pancreatitis is a bitch. I lost most of my interest in food, and whether I ate or not, I was dogged by bouts of nausea and general queasiness. I lost some weight and was weak and tired. From July through the middle of September, my throat was congested, probably from post-nasal drip. I coughed and cleared my throat constantly for weeks. It disappeared as suddenly as it showed up. By the time it left I felt my energy returning. I started exercising again, tackling paperwork I hadn’t been able to address in a year, and pushing myself to get things done. As I became more productive, my stress over my financial problems subsided a bit. Things were looking up.

And then came today, my latest doctor’s appointment to discuss the PET scan I had on Monday.

It was my first appointment since August. I was happy to see her and started babbling small talk when she entered the office. The look on her face stopped me short.

“What is it?” I asked. “The scan?”

“Yes.” She took time to compose herself.

“How bad?”

“The pulmonary tumors have increased in size and number. The disease has spread. There are new tumors in your liver, possibly your bowel, and your spine.”

“What?! How can that happen?”

“I don’t know. I hate melanoma.” This wasn’t the first time I’d heard her say that. “It’s vicious, aggressive, and unpredictable. When the radiologist called last night and said she had bad news, I had to stop and think who’d been scanned. I knew you were scheduled, but I was completely unprepared for bad news about you. I was so upset, wondering how I was going to tell you, that I couldn’t sleep.”

“I’ve had patients on immunotherapy who looked very good and their scans were good, so we continued the treatment. I’ve had patients who looked very bad and their scans were bad, so we switched them to something else. And I’ve had a very few, like you, who looked very good, but their scans were bad. In those three cases, I took them off immunotherapy immediately and put them on chemo, which is what I’m going to do with you too. In all three cases they achieved complete remission. That’s no guarantee; three is a very small sample. But it’s possible the immunotherapy sets up your immune system to work with the chemotherapy and make it more effective.”

“So the treatment I’m scheduled for today will be chemotherapy, not Ipilimumab?” I asked.

“It’s possible that continuing with Ipi would eventually turn things around by itself, but I don’t want to take that chance.”

“Will I lose my hair? I’ve rather come to enjoy these white curls.”

“You won’t lose your hair. You’ll have three treatments, three weeks apart, then another scan.”

I saw her eyes tearing up. “It’s not your fault,” I said.

She put her arms around me and said. “It’s just that I like you so damn much.”

Latest results

“The scan is what we expected,” my doctor said when she entered the exam room. “No new disease, but the tumors that are there are lit up. That’s because they’re inflamed."

She was referring to the PET portion of the scan which tracks the radioactive glucose injected into my body beforehand. Malignant cells gobble up the glucose more readily than regular cells, so they show up as points of light in the pictures.

"If it were up to me, I wouldn’t do the twelve-week scan at all, just the one at twenty-four weeks. But the FDA requires it.”

My side effects over the past three weeks have been nearly unbearable. The itch and rash are gone, for the most part, but I’ve still got pancreatitis, so I continue to have bouts of nausea and vomiting, even though the anti-nausea pills I take control my queasiness during the day. I also sleep a lot, feel very weak, and have extremely low energy when awake. When I reported the symptoms to my doctor, she sent me to the treatment floor for an infusion of steroid to boost my energy level.

In fact, from the laundry list I presented, she suspects hypothyroidism as well as pancreatitis, so she also ordered more blood tests, commenting that the immunotherapy tends to unleash certain elements into the blood that cause “little itises”, and these inflamed organs can cause lots of uncomfortable symptoms. She’ll call me with results of the tests, and plan to see me in a month to make sure things are under control by then. We’ll be in touch via email and I’ll go in to see her sooner if things don’t clear up by next week.

It’s unnerving for me to watch this process continue. I would certainly like to be disease-free. I’d like to stop having side effects from drugs that address one issue while compromising another. I’d like to forget about the medicine-balancing-act that attempts to keep it all under control.

On the other hand, the disease has not progressed in over a year. That is certainly good news. It makes the condition manageable. At that slow rate, it gives the immunotherapy a chance to settle in and work over the long term.

No easy routes

I make it a point not to write about other people in my blog. It is, after all, my blog and they didn’t ask to be included. I’m making this exception because I already mentioned my ex in a recent post, it’s integral to what I’m going through, and he never reads my blog anyway.

For those of you who know of my difficulties with my ex and who were pleased to see he’s been helping me, know that there are no easy routes or straight lines. I got into a hassle with him yesterday, ran aground of the issues that undermined our nearly twenty-five year marriage. It’s no surprise, of course.

My ex’s most generous impulses are inevitably undermined by his stingy follow through. Of course, he doesn’t see it that way, doesn’t see himself as stingy or withholding. He’d call it self-protection, preservation of his resources to ensure his own care before he can consider distributing them to others. This always drove me crazy when we were married. I’d count on his implied generosity which rarely made it past the suggestion stage. I’d end up feeling cheated, denied. He’d sense my resentment and hold his valuables closer to himself lest they be wrenched from him against his will. Needless to say, the marriage suffered. There was a huge amount of emotion bound into this difference of expectations. Toward the end of our time living together, it felt like we were speaking different languages. It became impossible to communicate.

Accordingly, what he does give freely is advice, much of it unsolicited. He constantly scours various sources of media for more and more facts that support his outlook and opinions. He loves to send people articles presenting some unpopular idea or other that he holds dear. His knowledge is the one thing he’s not afraid to lose, so he shares it readily.

I am deeply mistrustful of “facts” which strike me as lies presented selectively to uphold whatever one wants them to mean. I tend to see at least two sides to every issue, so my approach, on the other hand, is to base decisions on emotion and instinct. He characterizes this process as denial.

It’s been eleven years since we separated, ten years since the divorce. Time has rounded some of the sharp edges that threatened to slash each other to pieces. But the differences are still there, still capable of fueling explosions of baggage where dirty underwear flies in all directions.

We got into an argument yesterday over this very sort of thing. He had previously come up with an idea for loaning me money collateralized by my life insurance. In other words, I’d add him as a partial beneficiary on the policy and he’d loan me that portion of the death benefit. That seemed a logical and welcome solution to my immediate crisis. It would get me through the short term, allow me to pay my mortgage and other essential bills, and buy me time to implement more long term solutions to my situation. And let’s face it, all solutions take time to get up to speed and return rewards.

But he seems to have reconsidered this option. It now strikes him as ghoulish. He can’t foresee me paying him back before I die and doesn’t want repayment contingent on my death. Plus, he fears that such a solution would introduce unwelcome emotional complications with my daughters.

I’m caught in a bind. I appreciate the help he’s given me in terms of figuring out what needs to be done. But I also need a way to finance the next few weeks while I make my way over hot coals to get to a place of more income and fewer expenses. He will help me with some money, but far less than I had hoped for, and with many more strings attached.

This process is exhausting and extremely stressful. I feel like I’m getting an ulcer.

Still queasy

The bouts of nausea continue. I wake up queasy every morning and sometime during the day, usually at night, am overcome with an urge to vomit. It sometimes passes without incident, but it’s uncomfortable nonetheless.

My doctor says that avoiding fatty foods is the most important factor, but the only thing that fixes this is “tincture of time.” In the meantime, she suggested I take an anti-nausea pill in the morning to control the queasiness during the day. I started doing so several days ago, and the drug helps. I still get nauseous out of the blue. Last night it woke me from a deep sleep at 2 am.

The good news is I’ve lost some weight, about five pounds in the last two weeks. Believe me, it’s a lousy way to diet!

Looking up

Some of my most recent posts are pretty bleak. At least I was feeling pretty bleak when I wrote them. I’m not free of the problems that led me to the overwhelming situation I’m in, but I’ve gotten some good advice in the past two weeks and finally have some plans in motion to address the issues.

My top priority is to increase my income and reduce expenses so I can stay in my house. Toward that end, I’ve made an arrangement with my NYC client to spend two days onsite instead of one. Even with the discount I offered them, this raises my income substantially. Plus it leaves me free for other billable work and essential tasks.

One of my friends directed a potential new client my way (thank you Cathy!), and I’ve set up a job interview with a consulting firm near my home/office that’s looking for consultants whose skills combine modern and ancient technologies. My daughter found the ad for this position on the popular free bulletin board, Craigslist, and thought I might qualify even though she didn’t know what COBOL is!

I’ve accepted that I can (must!) do something I never wanted to consider before: rent out a room in my house. Over the next few weeks I’ll rearrange a couple of rooms to make a bedroom available for someone else and start looking for a responsible professional to rent to.

Yesterday I met with a CPA who gave me excellent advice about how to discharge some of the massive unsecured debt I’ve accumulated, and how to deal with two ill-timed and devastating real estate investments that have added to the burden. I will probably need to spend hours on the phone, but if I get to the right people, I may be able to handle some of the problems myself, without having to consider bankruptcy.

I’m working on it. And I have an unexpected ally: my ex-husband.

I went to him reluctantly because a year ago I asked him for financial help and he turned me down. Not only did he dismiss the idea completely, but he said some insensitive things at the time that insulted and stung me. Not because he doesn’t care what happens to me, but because of his own limitations, as I slowly came to accept. This time is different. I’m desperate and he recognizes it. He’s offered help in a form I can use. He’s helping me set priorities and work through the details, things he's good at. And he’ll provide some stopgap financial aid in a way he can live with. He’s the ear and the feedback I need right now, and things are indeed looking up.