Rural Doctoring

When a Lump is Just a Lump

A commenter kindly asked for a Noo update, so here it is:

After her critical illness this summer, the oncologist did not recommend resuming interferon therapy for melanoma. He had an antibody titer panel done which showed a weak immunologic response to the four months of interferon she'd already completed, and even though this isn't proof positive that the treatment "took," it is better than nothing and we were all quite relieved to shelve the idea of resuming thrice-weekly therapy, with its attendant exhaustion, diarrhea, and general unwell-ness. Since recovering from her hospitalization, Noo has been having regular skin exams, all uneventful until the last appointment when the dermatologist noticed an enlargement of one of her anterior cervical lymph nodes and sent her back to the general surgeon to have it looked at.

Now, the problem with these two events is that they were separated by a couple weeks of anxiety while the referral went through the usual channels and Noo had to wait for the next available appointment with the surgeon. Being in the medical field, I know better than to expect immediate reassurance, but I have to admit--it would have been nice if she had been sent from the derm office directly to a waiting surgeon who could excise the damn node the same day. And it would have been terrific if the pathologist agreed to cancel her dinner plans that day in order to get the sections prepped and stained, and then spent a leisurely hour looking at them under the microscope before dictating her findings. But this is not how things work, and I know this well, and now I also know a bit more about the gnawing worry the patient and her family experience while they are waiting for results, whether good or bad.

In this case, the news is good:  the excised node is a simple reactive node, no recurrent melanoma, no cause for alarm. So Noo has been restored to the category of Practically Normal People and we are carrying on with our post-melanoma lives, more dazed and confused--but also more grateful--than we were before the diagnosis became a personal journey.

If Lost, Please Find

Good news: Noo was extubated today and appears to be doing OK from the respiratory standpoint. She might be a tad bit delirious after seven days on the vent, but I give everyone a pass on the day of extubation. It is unrealistic to expect My Dinner With Andre, if you know what I mean.

Because If It Weren't Chaotic, It Wouldn't Be Life

More reasons than usual for the dense silence on this blog lately. Noo was hospitalized last week with severe bilateral pneumonia, intubated, and transferred to Macy's, where she is slightly better and getting tapered off the vent. 

Interferon Diary, Day #20

Today Noo receives the last of twenty doses of IV interferon! This signals the end of daily weekday schleps to the infusion center, and the beginning of the real endurance trial: eleven months of thrice-weekly subcutaneous doses. She's done so well with the IV doses, I think she'll weather through the rest of the year's treatment in similar fashion. Our emotional landscape--at first so overwhelmingly dark, when we got the diagnosis--has almost returned to normal: mostly sunny, some overcast days, scattered showers.

Warning: I Blither Aimlessly in This Post

Last week was odd, to say the least. Noo started interferon therapy, and this went smoothly--she's taking it like a champ, side effects and all. We're lucky to have some help, in the form of our Girl Friday, who can take Noo to the infusion center when I can't. However, I was able to go with her three out of the five treatment days last week, which is pretty good considering I was covering night shifts for the hospitalist service.

Interferon Diary, Day #1-2

So Noo has two IV interferon treatments under her belt and here's our impressions so far:

• Pre-treatment anxiety is worse than the treatment itself.
• Sitting in an infusion center for two hours is about as interesting as it sounds.
• A small dose of lorazepam (day #2)  makes the infusion time go by faster.
• So does reading vampire thrillers (Noo) and slightly vulgar essays by John Waters (me).
• Shaking chills develop within 15 minutes after concluding the infusion, usually on the way home in the car.
• Noo says the chills are so awful that it feels WONDERFUL to feel them go away, about two hours later.
• A gnarly, throbbing headache sets in 3-6 hours after returning from infusion.
• Ditto clammy, all-over achiness.
• You will sleep like a rock after infusion. Noo, who tends toward insomnia, thinks this year promises some of the best sleep ever.
• Maybe infusion centers should provide recliners for friends and family members as well as for patients. Napping in a regular chair makes is like sleeping on an airplane.
• Note to self: Signing up for night hospitalist shifts during the first week of infusion therapy was probably not the cleverest idea I've ever had.
• It is OK to lower expectations during infusion week. (Hint: I don't have all my tax stuff pulled together yet.)

Our Girl Friday is taking Noo to infusion today, so I can take a wee nap and get some essential paperwork (damn those reapplication for hospital privilege deadlines!) done. If it were up to me, cancer patients and their families could flip a switch and go into Bureaucratic Bypass mode for the duration of their treatments.

Zippidee Doo Dah!

We're starting interferon today!  Well, Noo is, to be specific; I'm just along for the ride. However, I am beginning to understand the parallel experience a patient's family goes through whenever they confront a major illness.  I may not be receiving interferon, but I am in charge of making sure we come home to a comfortable, well-stocked house after each treatment. So I made a couple of gallons of black bean chili yesterday, and made sure we had plenty of toilet paper. That was the limit of my coping skills for the day. Let's see what this day brings.

What to Expect During Your Cancer Year

Yesterday, Noo and I went to our friendly local oncologist's office.  He was great, and we weathered the tour of the infusion center (read: chemo chairs) pretty well, all things considered.

Before we left, we were provided with several pamphlets and booklets about support groups through the American Cancer Society--sort of a "Welcome to Cancer!" information packet, if you will.

Which raises the question:  How does one prepare to receive interferon therapy for a year?  The first month is IV, five days a week, two hours per session, best scheduled in the afternoon so the patient can go home, have a light meal, and sleep through most of the aches and chills which follow.  But what about the nuts and bolts of daily life with a PICC line, interferon, aches, chills, indifferent appetite, fatigue?  I don't claim to have the answer to these questions, but here's what Noo and I are going to do before she starts interferon at the end of the month:

• Make gallons of vegetarian soup to freeze and serve up on those "by golly, I've just had interferon and I don't have ANYTHING to serve for dinner" moments.
• Draft a general "movies to rent" list so she can watch one on a portable DVD player while she's stuck in the chemo chair for two hours.
• Paint the master bedroom a deep green, so at least the four walls in which she sleeps off the interferon won't be Landlord White.
• Invest in a really good mattress.  Ours are twelve years old and as bowed as backyard hammocks.
• Put our game faces on.  Most of what we're facing is the unknown, and you can't really plan for the unknown, can you?

Can you?

Two Jittery Women, Loose in the Big City

Noo and I had an appointment with the UCSF Melanoma Center yesterday, briefly summarized below:

• Jittery nervous energy all morning.
• Grim-faced drive across the Golden Gate Bridge ($6 toll! I remember when it was $3).
• Urban driving moment as I pulled up into a no-stopping zone in front of Mount Zion to let Noo (walking with a cane) off first while I went to park the car.
• Urban parking moment as I squeezed into a too-small parking garage on the next block, narrowly missing people driving Suburbans down the exit ramp at top speed.
• Classic medical office snafu, in which an administrative assistant said, "Oh, your appointment has been cancelled" and we replied "!!!!!!!!"
• Snafu elegantly resolved by squeezing us into the schedule of another of the medical oncologists.
• Jittery nervous energy while we waited an extra hour for the squeeze appointment. Passed time by reading bad design magazines.
• Ushered into a very small exam room.
• Noo changes into the obligatory exam robe.  I pillage the handout display and score an order sheet for IV interferon in melanoma.
• Jittery nervous energy while waiting in exam room. 
• Oncologist enters, almost on time, and is very nice and humorous, which sets us both at ease.
• Noo's chart missing most of the pathology reports from her recent procedures, despite the 25 phone calls made to various providers offices to release this information.
• However, I am an excellent historian and fill in the blanks.
• Oncologist spends almost 30 minutes discussing different approaches to Stage IIC/IIIA Melanoma (Noo's stage).
• He recommends interferon, and verifies almost to the word my understanding of the research and ACS recommendations for this adjuvant therapy.
• Quick exam of Noo's skin, then handshake and farewell.
• Another urban parking moment when I return to the garage and pay $14 for two and a half hours parking. Muttered curses.
• Another urban driving moment when I have to execute a nifty U-turn to pull up into the same no-stopping zone in front of the hospital to retrieve Noo.
• Pensive drive back to our hotel.

I'm in a jittery nervous head space about all of this, so that's all I'm up to writing right now. More about interferon and urgent progress in interior decorating later.

Hither and Yon

A couple weeks ago a commenter asked me to give my partner a nickname so I wouldn't have to refer to her by that rather bald, generic term "partner" which can too easily be interpreted as a medical associate rather than a significant other. So I hereby designate her as "Noo" and will refer to her by this moniker from here on out.

The Myth of Pink Carnations

So it turns out the plastic surgeon wants to keep my partner in the hospital until the vacuum dressing on top of the graft site is removed on Monday or Tuesday. The skin graft is in an extremely awkward position on the right side of her back, with the tail of the graft in the axillary crease itself. This means she's not allowed to move her right arm at all; it is strapped down with a shoulder immobilizer. 

We weren't prepared for her to stay in the hospital so long, but I can sympathize with the surgeon's desire to keep her in a controlled environment where she can't slip up and compromise the graft. However, I'm not the one stuck in the hospital. My partner is. And she's going crazy.

Here's why:

• Her right arm is completely immobilized to protect the graft site.
• Her left arm has a heplocked IV in it.
• Half her head is shaved because the surgeon took the donor skin from the scalp.
• She's vegetarian and the cafeteria sent her chicken for lunch.
• Dinner was vegetarian but she can't really cut up a baked potato with only one hand.
• The hospital has double rooms and is running at capacity, so the staff is harried.
• Her roommate is an elderly, demented woman who keeps trying to get out of bed by herself and objects to the TV being on. So far, all she's said to us is "Mind your own business!"

Hospitalists, take note: this is an example of why people go ape-shit crazy in the hospital. What's the remedy? Maybe a whiff of Risperdal? A stat order to Round Table Pizza? Earplugs? A nice bouquet of pink carnations from the volunteer's gift shop?

We made do with some intensive color swatch discussion (newsbreak: we're going with English manor-house library green walls in the master bedroom) and an emergency run to Blockbuster for movies to watch on a portable DVD player. Her choices:

• Day of the Dead
• Hellboy II
• Hancock
• Batman: The Dark Knight
• Wanted

Obviously she's in a dark mood. I'm not buying green paint yet; maybe after she gets home, she'll change her mind and want the room to be yellow. Or carnation pink.

Skin Graft Today!

What a headline, no? My partner gets her excision site grafted today. With all the decorating we've been doing around here lately--a great anxiety-buster, by the way--we've taken to calling the skin graft process as "reupholstering." 

Yeah, we're crazy.

We Interrupt Our Regular Programming For An Expression of Gratitude

Updates:

• My partner's excision wound is granulating like a champ!
• We are both sick to death of the vacuum dressing, which burps and farts like I imagine Shakespeare's Falstaff did behind the scenes.
• Our plastic surgeon was hoping to do a skin graft this week, but there is no available OR time, thanks to the usual end-of-the-year crush of elective surgeries. People want to get as much medical stuff done before the end of the year because deductibles reset at the beginning of the following year.
• Redecorating and renovating continues apace. We have chosen eco-friendly flooring for the new bathroom/pantry design, and standard countertops for the new sink counter.
• I have painted the dining room a beautiful clear, primary red, and we are going to move the dining table out of there (we eat around the coffee table most of the time) and turn it into a quirky TV-free reading room.
• I still haven't blown up at anyone. Of course, I've been avoiding conversations of any kind so this has not been difficult.

Oh-Oh, Compassion Bypass Ahead

Throughout the recent chaos resulting from my partner's melanoma diagnosis and my own redecorating efforts, I have continued working, although not at a very busy pace--just enough work to be disruptive to what feels like the real business of sorting our belongings into trash/donate/storage piles, and taping the edges of doorways in preparation for painting the dining room red. This is one of the reasons I have always worked continuously, because I find it so much easier to motivate myself when I'm in the middle of a run of ten shifts or six nights on call. Conversely, when I work for a day, have two days off, then work another half day, then the smallest responsibility feels like a major imposition.

Just a Feeling

Last week, I was talking to a 70-ish man with COPD and a variety of cardiac disease (ischemic, valvular). The subject was advance directives and code preferences. 

Things Are Good, Even if I Am Nuts

OK, a couple of updates:

• My partner had a wide excision of her original melanoma site and a sentinel node mapping on 12/2/08.
• The excision margins were negative for satellite lesions. Profound relief and rejoicing.
• A sentinel node and a portion of the wide excision have been sent to Stanford's pathology lab for immunohistochemical testing, which is going to take another week or so to be completed. This is high-tech stuff.
• Her 10x5cm wound now has a vacuum dressing in place. This is taking some adjustment, because the device has to be carried around in a fanny pack all the time. We call it Cousin Albert. The machine emits intermittent bubbly sounds, which we refer to as Albert's flatulence.
• In the middle of all of this, I did three night hospitalist shifts and one prenatal clinic.

A Doctor's Guide to Being Human

When I was a senior at Stanford, my ambitions for my final year of college were terminally derailed by a geological event called the Loma Prieta earthquake.  The temblor caused so much damage in my residence that everyone had to be relocated to other dorms. I was the resident assistant (RA) for my house, meaning I was the problem-solver and support person for the rest of the students who lived there. This was a paid position and was something of an honor, and I took it seriously. Within minutes of the earthquake I was back at the house to account for the whereabouts of all the residents. I lost my wallet during the chaos and had to walk around for two weeks with nothing but some loose change in a paper bag. As the days went by and the damage to the building was being evaluated, all of us suffered from various symptoms of post-traumatic stress. I remember diving under the nearest table whenever an aftershock struck. I didn't sleep well. I had no appetite. It was hard for me to concentrate. I looked like something out of an Edward Gorey illustration.

Suddenly, Things Are Different

I haven't been posting very actively on this blog or on Twitter, and this is because I am processing some news I got last week. 

My life partner had a nodule on her back. At first, it looked like a shiny papule and I thought it was a basal cell carcinoma so I didn't call the dermatologist right away.  Within six weeks, it had doubled in size, and then it took another five weeks to get an appointment. Our dermatologist took one look at the nodule, which was now quite large and melanotic, and did an excisional biopsy. He thought it was probably a squamous cell carcinoma, but the pathology told a different story:  melanoma.

Pathology from the biopsy revealed a 10mm tumor with evidence of microscopic ulceration, two poor prognostic signs. Right now, we're in the process of arranging for a sentinel lymph node mapping and a wide excision. After that, there will have to be an oncology consultation to see if there is any role for adjuvant therapy with interferon-alfa or radiotherapy.

We've been through some health issues in the past, but nothing life-threatening. Now suddenly we are facing a vast, malignant uncertainty. In an effort to ground my understanding of what is happening to us, I've been researching melanoma and its prognosis. This tumor is at least IIC and perhaps IIIB, depending on the outcome of the sentinel node mapping. Apparently there is a five-year survival rate of 45-67% for IIC, and 29-65% for IIIB. It is hard to grasp wide ranges like that, but what I take away from these data is that there is a 1-in-2 or 1-in-3 chance that her life may end in the next five years.

All the other information--about cell morphologies, lymphatic spread, most common metastatic sites--tends to blur around the edges, even to my medically-trained mind. Because in this situation, I am not a doctor, I am family, I am an individual person who is as terrified about the development of a terrible disease in someone I love as any person in the same situation. And terror is not an exaggeration. I haven't been afraid of anything in many years, and now I am.

So I have been doing what I do when I am afraid and anxious: a little retail therapy, a little reality TV, and some fearsome rearranging of furniture. Eventually this stage will evaporate and I'll need to find some long-term coping strategy. Recently I have reaffirmed my identity as a writer, so--with my partner's permission--I have decided to write about our journey on this blog, or--to be specific--about my journey as a family member of a person with a serious disease, a family member who just happens to be a doctor. I anticipate a lot of growth and challenge during this journey, and I believe this is the kind of experience doctors--people--need to share. So look for a new category called The Melanoma Chronicles on this blog. And don't worry--I don't plan to let it take this blog over completely.

Image in the public domain.