Thursday, August 29, 2013

Crazy Healers

I used to chastise my mother for having a stint in the hospital and never bothering to mention it to anyone. She would look askance and say, "It was only a few days." Now I understand what she meant and why she didn't send out mass e-mails about it.

Steve had chemo last Tuesday and this Tuesday he wanted to go to the ER and get a blood transfusion. The side effects of the chemo were rougher this time around: he was looking a little yellow; his energy and appetite had been dismal every since the treatment, not to mention the nausea and vomiting. So we got into the car and I gladly drove the 40 miles to Long Beach VA.

Now, most of the people who read this blog have visited our home, so you have an idea what that's like. But in referencing our experiences at the Long Beach VA facility, I'd hazard to say any reader has driven past it, much less stopped in for treatment. This being so, I've adapted their standard map to indicate the places we go in the facility on a regular basis. And, yes, it really is as massive as it looks. It sits right next to Long Beach State University's campus.


During the drive, Steve apologized again for "making" me drive down, and I told him this was not a problem: I feel frustrated and angry that I can't do anything for him, so when there is something I can do to really help, I'm glad to do it, and it makes me feel like I'm accomplishing something. Then came the ER.

Like most emergency rooms, the one at the VA is usually overwhelmed by the influx of patients, and separating folks out and getting them the attention they need (usually including admission into the hospital) is a intricate task.

When we got there, Steve ended up on a gurney in the hallway while I sat next to him and listened to the charge nurse begging the staff on the inpatient wards to please prep the beds they had so ER could start sending patients up.

One energetic and fully psychotic fellow was down the hall moaning and hollering, all nonverbal. At times he sounded exactly like Gene Wilder in "The Producers" whenever someone tried to steal his blanket.

We ended up sitting there for nearly three hours before we actually saw a doctor, got blood drawn and had the results from the lab confirm what we already knew: Steve needed a blood transfusion. We had walked through the doors at 1:30 and it wasn't until 4:30 that it was finally confirmed that they were admitting him, and I could return home without fear of stranding him in Long Beach.

Steve texted me at 7:15; he was still in the ER, but they had started his first unit of blood. The Moaning Melvin down the hall had gone hoarse with all his wailing and was now doing impressions of Chebacca. Steve called me a bit later, but cell reception is very spotty in the ER, so it sounded like he was calling from an alien bar on Jupiter, all the background noise garbling in with his voice.

It was 10:15 before Steve was actually admitted onto the ward. He gave me a call after, and this time I could hear him (being that he was on the 8th floor and in a windowside bed). The next morning, he called to say he was being released, probably about noon; about 11:30 he called again to say, "Come pick me up."

When I arrived about an hour later (the usual one-way time for the trip), I found him hooked up to a full IV bag with a sheepish look on his face. "I tried to call you but you'd already left. Right after I talked to you, the nurse came in with this magnesium sulfate infusion that was ordered this morning but didn't show up until just after I called." It was going to be another four hours for this transfusion.

The room was really crowded, with all four beds occupied, so I decided to go down to the Patriot Café, grab a sandwich for lunch and cool my heels. I sat out back on the patio, as the temperature was a balmy 80-something, and ended up dozing off in one of the comfy upholstered settees under an umbrella.

We ended up leaving the hospital about 4:45. I was just glad to get home. And it never entered my head to call anyone or drop an e-mail and let people know Steve was in the hospital, because he was never in any danger. We're comfortable with the situation so everyone else should be.

I think I'm beginning to understand getting older a little better through all this.

Thursday, August 22, 2013

Hot Town, Summer in the City

One thing I really hate about Pasadena is the hot, muggy summer days that we get. Luckily, most of this month has been a tad milder than insufferable. But then, I'm highly sensitive to emotionally irritating things these days because there are so many of them and their parade through our lives seems so chaotically consistent.

Our first cake from a real cake bakery
Here is the only photograph taken at our fifth wedding anniversary party (thanks, Roberto). I kept the invitation list small: Cousin Robin and Evan attended (Robin was my Best Man and Evan photographed our nuptials — see our wedding album on Facebook); also a couple of our gay married friends (all married in 2008), and my good pal Jessie (back in California from a stint of overseas teaching assignments). I kept it small in case we had to cancel.  The photo is, obviously, the anniversary cake: white chocolate raspberry cake with chocolate filling. (I would not use this place again, as the woman in charge had never heard of chocolate ganache).

It was a very casual event. I asked everyone to bring finger foods and I supplied the drinks, party favors and cake. I wanted to keep things loose, as planning ahead is not easy these days; everything depends on where we are in Steve's treatment course and how he's feeling on any given day. In fact, he had an appointment in Long Beach the day before the party (which was a surprise party), and he had been talking about perhaps getting admitted to the hospital for a transfusion. While we were in the waiting room, he said he felt better and didn't need the transfusion. I said, "Well, everyone who's coming to the party tomorrow night will be really glad to hear that."

I didn't want him to feel obligated to attend the party if he really needed the medical treatment, and I didn't want the knowledge of the party to affect that decision, because I know it would. He's always been one to consider everyone else's feelings and needs in making his decisions, and now is the time for him to start getting really selfish about his own needs in everything.

We were married on Aug. 8, 2008 (auspicious 8/8/8), a couple of months before Prop 8 passed (not so auspicious). Then the economy tanked, and within a year I was laid off at The Reporter. I can honestly say the one thing that has brought true happiness to my heart in the intervening half-decade is our marriage and the foundation it provides us. And seeing the weekly slick nothing that The Reporter has been reduced to, I'm glad I wasn't kept on, although the money was very nice.

Looking back on it, things haven't been so wonderful: None of my expectations have been realized, plans and structure have been frustrated or stonewalled. But then I see that things have kind of flowed into a place where we're able to maximize taking care of Steve: he's retired, I'm working on my own schedule out of my own office, not making much money but still involved in graphic design and not beholden to an employer. And the bills are getting paid for the most part.

We haven't been to our cancer support groups meetings (Thursday evenings) in about a month now. First we were on vacation, then the oncologist's appointments fall on Thursday afternoons (we usually don't feel like attending after shlepping to Long Beach and back), and our anniversary party took precedence one week. So I'm hoping that we can get back into the swing of it today. The leader of my support group gave me a call during dinner on Monday; I was busy cooking so I let it go to voicemail.

There are still milestones occurring in Steve's treatment. This last Friday, he had a blood transfusion scheduled and I had a migraine when I woke up, so he drove himself down to Long Beach and had a volunteer down there wheel him the quarter mile from the valet parking (very nice) to the infusion clinic. The transfusion worked, as all his blood work was satisfactory, and he started his third round of chemo on Tuesday.

He's starting to react more intensely to the chemo. He has nausea and vomiting, is weak as a kitten and sleeps for most of the two or three days after receiving a dose. My job is hounding him to eat high protein (or at all), and he's been pretty cooperative. The nausea subsides but never really goes away. He has anti-nausea medication, but the side effects are as bad as the occasional nausea, so he takes it sparingly.

The chemo treatments are scheduled about three weeks apart, and the doctor keeps close tabs on his blood counts in between to head off any depletion of blood cells (white and red, as well as platelets). I keep looking for some kind of routine in the treatment, but his oncologist says there is none: things go according to how he responds each session.

One bright point: the liquid is collecting in the pleural cavity no longer. X-rays have shown that autopleurodesis has occurred, and there is no longer any need for the chest tube. In fact, the last time we attempted to drain, we got less than 0.2 liters, and I was freaking out because air bubbles were being sucked up when Steve inhaled (none breached the chest wall, luckily).

This was the last "secondary" medical problem to be resolved (there was also the necrotic small toe on his left foot). With each of these secondary problems came medications that caused reactions with the chemo and suppressed Steve's bone marrow and blood counts. Hopefully, he won't have to get as many transfusions now that those drug interactions are gone.

I got an e-mail from a fellow chamber of commerce member, a family law/estate planning attorney who is in practice with her husband here in Pasadena. I had suggested trading out some web design work (their present site is, quite frankly, atrocious; one of those "build your own" jobs), and they were receptive but not functionally responsive. This was all well before Steve's diagnosis in March.

The current e-mail kind of initiated the process, and we now have an Estate Planning Questionnaire to fill out. Again, this is not a happy time for us, but all these things seem to be occurring to facilitate everything we (and Steve) are going through right now. And I'll have a new job for the portfolio (they want to design from the logo on up, so the work will consist of print as well as web.

I've got two weeks until the Chamber of Commerce Directory starts active design work, and I'm trying to tidy up the website for Cable International Art and Antiques, get some smaller projects out of the way for one of my favorite clients, Joy, and initiate designing for the attorneys. It will all come together well; the trick is to keep on top of the moment without neglecting the consideration of what's coming down the road.

For me, I will feel blessed when we exit the summer season (usually late October or early November) and get some rain and cold nights: I miss having a comforter on the bed. It's been so warm in the evenings that we sleep with just a sheet, and the ceiling fan is usually running overhead to keep things as cool as possible.

And with fall will come Thanksgiving and Christmas. Last year we didn't put up Christmas because we were out of town. This year it all comes out as splashy as possible and ripe for making memories.

Celebration is very important these days.




Monday, August 5, 2013

Another Vacation

60th birthday balloon
Just a couple of months ago, I was writing about our vacation to Eureka. Then everything hit the fan.

Since then, a major priority has been simply to reach some kind of stasis, some kind of routine, and one has not presented itself. Things are just too complex, too many cooks in the kitchen, as it were.

Dr. Klein, the oncologist, is holding off on the next round of chemo because Steve's immune system seems to be hit hard by the treatments. First it was the platelets, which were mitigated once they found the antibiotic that was causing the contraindication. Last consult session with Klein, she called up afterwards and asked Steve about the medication other doctors were giving him. Sure enough, one of them has, as a side effect, a depletion of bone marrow and the production of red blood cells (Steve's current problem post-chemo). He's stopped taking that, and we're going to see how it affects his immune system.

Ken and Leonard in Cambria
Meanwhile, last month we saw a window, an opening of time when it was almost guaranteed that Steve would be feeling good and we'd have the opportunity to get out of town for a couple of days. So we took the leap of faith and set up the trip.

We left Pasadena on Thursday, July 25, around noon and headed up the coast. We stopped at our traditional spot (IHOP in Goleta) for the usual mediocre fair (we both had omelets with pancakes on the side). We arrived in Cambria at about 5 o'clock and actually had very little problem finding Ken and Leonard's place.

Turkey in the pine needles
Ken and Leonard are friends who recently moved up to Cambria to retire. I have a long and uninterrupted love affair with Cambria, ever since my high school days, so it's a special treat for me that we have friends we can stay with up there.

We kicked back for a while; I recall a short nap and then we were off to Robin's in the Village of Cambria for a very nice dinner. (I had the braised duck breast with a cranberry-apricot couscous which was really delicious).

Linn's Quesedilla
Ken and Leonard live in the beachside area of Cambria (west of the Pacific Coast Highway), up in the hills surrounded by coastal pine forest. The population density is probably close to that of the Hollywood Hills, acre for acre, and while there are homes over the entire hillside, there is little intrusion, visual and auditory, from the close proximity of nature. In fact, deer and wild turkeys are among their boldest new neighbors.

Linn's Chicken Pot Pie
We stayed in Cambria through Friday and until Saturday afternoon. They were wonderful hosts, driving us around, showing us the sites, giving me a chance to catch up on the changes that had taken place in town over the years.

Ceramic
Totems
On Saturday, Ken and Leonard had a wedding to attend, so Steve and I hung out "downtown," and I had to take him to Linn's for lunch (which always includes a piece of their wonderful pies). This is the original Linn's, which started out at a roadside farm stand selling Olallieberries. When I lived on the Central Coast in the 1990s, they had a restaurant in downtown San Luis Obispo which I used to frequent for lunch.

Ken's "Favorite Spot"
The best thing I remember about Cambria (besides the company) was the relaxation and the walking and browsing the shops. I was concerned about how much walking Steve could stand, even fresh off a transfusion a couple days before.

Surprisingly (for Steve as well as myself), he held his own and realized, I think, that he has more stamina and energy than he gives himself credit for. Also, there are some days when he's doing fine, full of energy and practically his old self. Then there are days when he's simply worn down and feeling the chemo's effects on his system.

View of docks and Morro Rock
When we left that afternoon, one-third of our mission had been accomplished: Relax, unwind, get to know Ken and Leonard better, and get Steve thinking like a regular person and not a "sick" one. I even noticed at dinner the night before in Morro Bay that he was right in the thick of things and happy to be a part of it all.

Steve & the Birthday Boy
So Saturday afternoon we bid farewell to Cambria and our wonderful hosts and headed down to Grover Beach for the second third of our visit, which was to spend some time with my sister Kittie and her husband David. And since they don't have a guest room, we stayed at the Holiday Inn Express on Oak Park.

The b'day spread begins
For dinner that evening, Kittie and David picked us up and took us out for my birthday dinner at Marisol at the Cliffs in Shell Beach. The food was delicious and wonderfully presented.

Sunday we drove down to Avila Beach, which has been completely rebuilt along the beachfront. There, we browsed around and Steve got me a new pair of flip-flops as my birthday gift.

Susan likes the Hat
At 3 p.m., we headed over to Kittie and David's house where we had a pot-luck-type birthday party with a few close and old friends. Kittie had gotten a pink champagne cake from the Madonna Inn (a sort of family tradition when going overboard on cakes). Again, a small but significant group of people whom I haven't seen in a long time. There were a few small gifts (I had said none, unless something screamed to be purchased as my present), but it was the company that meant so much.

We headed back to the motel, loaded down with leftovers that became dinner. Steve had reserved the handicapped room, so the tub was really big and deep, and I took a really hot-hot bath before retiring for the evening.

We slept in until 10:45 Monday morning, packed up and checked out. We stopped at CJ's on the way out of town for some lunch, then headed home.