I said I'd give more details about the scan results. I can't actually give as many details as I might like, because I admittedly don't have as adequate of an understanding as I'd like of the results. For example, "The treated disease is confined to the normal boundaries of the mediastinum; therefore, measurement assessment is not possible." Is that just a limitation of the PET/CT scan -- anything that's left doesn't take up any excess space, so they can't tell how much space it takes up? The actual doctor's visit was very frustrating. The first part was that they told me that they had the results, but wouldn't actually give me a copy of the report while I was waiting to see the doctor. They check my vitals at each weekly visit, and my blood pressure was very high. High enough that the tech questioned the accuracy of the machine (esp. since I don't really have a history of high blood pressure, even during chemo) and took a measurement by hand. To which my response was that if you want to see my blood pressure come down, you'll give me a copy of the damn report now. I had gotten up and was about to start searching through the paperwork that he left behind when he left the room to find it myself, when he came back and that wasn't necessary. I suppose their logic is that they think that you need a doctor to adequately interpret the results for you. Which to a certain extent I can agree with, but I have a few issues with that. First, I'd still like the opportunity to see the report myself as soon as possible. Second, my oncologist did a thoroughly inadequate job of actually explaining anything to me. While I have no reason to question his medical qualifications, it's an understatement to say that his bedside manner leaves a bit to be desired. I've been somewhat frustrated with aspects of his personality for a little while. Those frustrations had increased in the time leading up to this scan, and last week's visit was the final straw. I don't recall exactly what he did (or did not) say -- Lorien's paraphrasing is something to the effect of "I see these reports all the time; I know what matters here". Maybe the details don't matter to him, but they do to me.
I was pretty upset, and somewhat furious, when we left the appointment. Lorien did a good job of calming me down and putting things in perspective. The important thing is that the chemo worked. It did what it was supposed to do. I think the gist is that while there still might be some residual tissue left from the tumor, it's not active. And that radiation might be the answer to deal with what's left. I expect to have a clearer picture when I meet with the radiation oncologist. I have an appointment next week, on Wednesday. I've already met with him once before, and I can attest to the fact that he has better communication skills than my oncologist.
Or perhaps I should say my soon to be former oncologist. I pondered the idea of sticking with him, since it's the path of least resistance, and assuming that there's no relapse, my visits to him should be asymptotically tapering off. But I've come to the decision that I really don't want to talk to him again, and I need to have a doctor that I can effectively communicate with. I've already done some asking around getting recommendations for alternatives, and I'm in the process of trying to schedule an appointment with one. Hopefully I'll be able to do that, and discuss the results of the scan in more detail, before my appointment with the radiation oncologist. If not, I expect that the radiation oncologist can answer any remaining questions.
I've been spending the time since then trying to get some stuff done, continue recovering from my last chemo cycle (this blog post was delayed a day because Sunday night was my first night forgoing sleep meds, meaning that Monday was a day of being exhausted), and relaxing and having some fun. On Friday I rode with some friends in the East Bay Bike Party, which is sort of a kinder/gentler version of Critical Mass, which imho has become a bit too dominated over the years by an overly vocal and confrontational minority. Although I see from following that link that the 20th Anniversary ride is coming up in September. I suppose that will be worth riding in.
Sunday was Lorien and my birthdays. Yes, for those of you that may not know, we share the same birthday, August 12 (not the same year). As Lorien likes to say, when you meet someone and discover that you have the same birthday, it right away gives you something to talk about. In our honor, Matt and Alice came over on Saturday night and made us dinner. Extra special kudos to Alice for baking us a chocolate cake!
On our actual birthday, our main plan was to head into San Francisco and have a picnic at Dolores Park. Things didn't end up going exactly according to plan, but that's fine (and kind of par for the course), and it was still a very enjoyable day. First we sampled some teas at Samovar, a kind of uber high end tea shop. We picked the location by Yerba Buena Gardens, so Dylan could run around outside. Sadly they were out of the loose leaf Russian tea that we wanted to take home. I guess we'll have to find some time to head back. We did however pick up some Ocean of Wisdom, which I highly recommend. And am drinking right now as I write this.
Next we headed to the Lower Haight and visited Eve at the Penthouse, the apartment where I used to live when I was in the city. (Was that 10 years ago? My how time flies...) It was a convenient stop that let us put Dylan down for a nap while we relaxed and had a cocktail. Equal parts of peach vodka, orange liqueur, and elderflower liqueur; plus a dash of bitters; shaken over ice. Made up on the fly based on the ingredients at hand, I was impressed with the results.
Things were happening later and taking longer than we had planned, so by the time Dylan woke up it was quite late in the afternoon. And lunch was already in the past (Lorien fetched some takeout while Dylan was napping). We still wanted to make a quick visit to Dolores Park if we could, because there's a great playground there that we've been hoping to check out for a while. And it hadn't worked out previously when we had taken Dylan to the city to visit Neal and Genevieve and Teddy. So our plan was that we'd stop there only if we could easily find parking. Which thankfully we did. Actually we had really good parking luck the whole day, including rock star parking directly in front of the Penthouse. Somewhat regretfully, driving ended up being far less hassle, faster, and cheaper than BART would have been.
For the evening we actually paid for a babysitter -- I'm not positive, but this might be the first time we did this since our birthday last year. We had dinner at Five, in downtown Berkeley. Both Lorien and I felt it was good, but not great. Following dinner, we continued feeding our armagnac habit at Cesar, where we happily discovered that they will pour flights, allowing us to sample a greater variety. Oh yeah, I don't think I ever got around to posting previously about our armagnac discovery. Armagnac is sort of like cognac. But from a different region of France. And, imho, better. We had never even heard of it before our trip to France a few years back, but once we discovered it we fell in love with it. It's poured in very small quantities and is outrageously expensive. I'm willing to pay a lot of money for a bottle that I know I'll enjoy, and it will last a long time. But I'm not going to pay over $100 for a bottle of liquor that I haven't had the opportunity to try first.
Sadly, our experiences with armagnac in the States had until recently been largely disappointing. Most bars and restaurants don't even have it; and if they do they just have one or maybe two to choose from. And everything we had tried here hadn't quite lived up to the caliber of what we had had in France. A few cycles back, during a time when I was able to drink and feeling up to it, Kim had a night off and volunteered for some last minute babysitting. Lorien and I went out for dessert at Cioccolata Di Vino. We still wanted a little something more afterwards, but felt we had exhausted all the possibilities that were of interest to us there, so we stopped at Cesar on the bike ride home. I figured we'd get cocktails, but Lorien decided to ask to look at the spirits menu. What do you know, they have more than a dozen armagnac's! We're determined to work our way through the menu, and buy a bottle of something that both we like and can find at a retail establishment.
Our latest trip there also convinced us that our preference of armagnac to cognac isn't just based on having previously sampled only cheap cognac. As part of our flight, the bartender gave us a taste of what he thought was their best cognac. And we still liked the armagnac better.
We finished off the birthday experience with leftover chocolate cake. All in all, a wonderful day, and a great way to start our new year.
I cleared space on the mantel yesterday to put up our birthday cards, taking down a bunch of old cards. I guess I hadn't done it in a while, since these included last year's birthday cards. Last year I turned 42, and Lorien started her note with the (somewhat obvious) allusion to Life, the Universe, and Everything. This past year most certainly has been the year of that for me, in ways that neither of us could have realized at the time. (In retrospect I did have cancer then, but we didn't know it.) Her note on the card ended with "I have a feeling 42 is going to be a good year", which I must say turned out not to be the case. Yes, there have been advantages to not working for the second half of the year, and getting to spend more time with my family, but overall I'd say that 42 has been a kind of sucky year -- I don't really recommend cancer and chemo as ways to get out of work. I'm very happy that I was able to get the scan done before our birthday (I had assumed that it would be the week after, and the topic would be hanging like a cloud over any celebrations), and that the results were positive. And I'm very much looking forward to 43 being a better year than 42.
1 comment:
Now that I think about it, 21 didn't really turn out to be a good year in "Tommy" either.
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