Day -2 – About Halfway There   October 4th, 2011

One year ago yesterday, Linda and I were in Roses, Spain, having the best meal experience of our lives under the personal care of Chef Ferran Adria and his now closed (but still worshiped) el Bulli Restaurant.

It was a lunch event like none other, involving over 35 course, meeting four new foodie-friends-for-life, and it took a mere seven and a half hours (and ended early only because our prescheduled taxi service was getting impatient). And the wine pairings were out of the world – perfect when sipped with a bite of the paired food. Though, Ali (one of our new friends) and I did more than sip our way through a fabulous Alvaros Palacios 2004 Priorat.

As I sit here tonight at the National Cancer Institute in Bethesda, Maryland, working my way through dinner – consisting of peanut butter, jelly, and cream cheese in a low carb tortilla, and needing frequent enough sips of water moisten each bite enough to prevent me from choking on the dryness (since I have virtually no useful salivia production left at the moment), I can’t help but wonder at what a bizarre but still amazing year it’s been. Those of you who know me know I enjoy exploring cuisine and culture – from eating guinea pig in a hole in the wall in Quito, Ecuador, and street food in Fiji and Kowloon, to enjoying the cuisine of top chefs in New York, Hong Kong, and Boston. And yes, even enjoying fried butter at the state fair.

I see my salivary problems (and I have been told that those will be accompanied by loss or change of taste) will last for some time (in addition to the three months of neutropenia). But in adversity, there’s challenge, and being a devout experimenter in the kitchen, I am sure I can come up with some foods that will overcome my limitations and provide both enjoyment and education, once I’m physically able to spend time concocting. The time spent recuperating will also give me a chance to figure out how I might want to change my approach to cuisine (which in the past was to treat it as a visual as well as olfactory art form) in use in the fine art food photography I had started work on last year.

I lead in with the above as a sort of precursor that I’m doing about the same as last night and don’t have much more to say.

I am now totally neutropenic – with nary any neutrophils left to count in my blood. Other symptoms from yesterday persist: Dry mouth, swollen jaw, slight tiredness, and – how to politely put this – intestines that are a bit more aqueous than they should be. But all those are under control.

Considering I just went through another two rounds of total body irradiation (TBI) today, that’s not bad at all. No sirree. I’ve been informed that I’m not the first to have charged through the first six days into the treatment so well, and that folks here remember two other prior patients similarly bypassing the most common and debilitating side effects. The usual trend tends appears to be towards a lot more unwellness early on and then staying that way for the course of treatment and beyond.

So please cross fingers and knock on wood for me some more that I can buck the side effect trends further after tomorrow’s final two doses of radiation. The side-effects induced by those two final treatments will not immediately appear, and might take a few days to manifest. Again, all I can do is wait and see what happen, and hope for the best combination of events (and ask the same of you).

For a recap, Day -1 (tomorrow) is the last day of radiation. Day 0 is, well, THE DAY. It’s when I get my billions of TIL cells injected into my system. I have a carefully thought out music playlist created (with some help from my friends) that I will play to help encourage them to hunt and kill all those nasty growing melanoma cells in my body. I hope to publish that on Thursday before I start IL-2 later in the day, as I understand that once IL-2 starts I won’t be in shape to do much of anything at all for five days.

To N.E.D.!

P.S. Any plans to give blood yet? If not, please think about it.

 

Day -4 – Gone Neutropenic…   October 2nd, 2011

The duvet Linda mentioned in the previous post, combined with being untethered (no IV), and an Ambien, led to almost 12 hours of sleep, with just a few interruptions. I went to sleep just past 9pm last night, and woke up just past 9am. I did have a fever during the night, but Tylenol helped bring that under control for a while.

This morning when I woke up I had a fever again, and also learned that I had met the requirements for neutropenia – meaning a neutrophil count of less than 500 (based on a white blood cell count of 630).

My nurse calls me an over achiever. First I pee up a storm, and now I’ve gone neutropenic at least a couple of days ahead of schedule.

Because of the fever which is coming and going while neutropenic I’ve been put on a broad spectrum anti-biotic (since I have very little of my immune system left), as well as all sorts of other drugs designed to prevent fungal infections, cold sores, acid reflux, and all sorts of other things. I’ve been told that by the time I finish my treatment in eight days, I will have had more different prescription drugs during the treatment than I have had the entire part of my life until now (since I have no normal prescriptions otherwise).

I was light headed this morning, but figured at least part of that was due to lack of much food yesterday, so I’ve slowly been working to eat a bit more today, and it has helped.

At present, I am sitting in bed (hospital beds are pretty cool with all the different angles they support, but I wish they were a wee bit wider), taking in one of my first two units of blood for the day. Having such a blood transfusion is necessary because my hemoglobin (red blood cell related) counts are way down. I will likely have these blood transfusions every day or so while I’m neutropenic.

And that brings to mind something else. A lot of people have been asking Linda and myself what they could do for us and to let us know if we need anything. Many of you know that we are difficult people to help (and buy presents for) because if we need something we just go out and get it or take care of it pronto ourselves. And with the uncertainty of what my symptoms will be post-treatment (e.g. nausea, fatigue, loss of appetite), we can’t really plan ahead very well either. And it doesn’t help that I will be limited to a neutropenic diet, which means we can’t accept food gifts for three months, however much we’d want to.

But a practical thing that most of you can do for us, for yourselves, and for cancer patients around the world, is give blood and platelets. When I had my platelet infusion last week, for example, I received six units of platelets, given here at NIH the day prior by six different people. And the dozen and a half, or so, units of O-negative blood I am going to be receiving as part of my transfusion also come from individual donors (although not the day before, like platelets). In fact, Linda will be donating platelets tomorrow (you can normally only give blood or platelets every eight weeks, and Linda last gave blood exactly eight weeks ago at Mass General). Thank you Linda and Mona for this excellent suggestion!

Today’s course of treatment continues with my fourth dose of fludarabine tonight, and early tomorrow morning I get my first of six doses of full body radiation – two doses a day for three days. Unclear how I will be feeling after those. However, what is pretty clear is that my immune system will be down to zero in time for my TIL cell administration on Thursday, and that is awesome. Don’t want anything getting in the way of my melanoma fighting cells!