Wednesday, July 29, 2009

Maskmaker, Maskmaker, make me a mask....

Today I went down to the new-ish radiation center in South City to have a mask made for my upcoming treatment. The two technicians who were in charge of making the mask were pretty entertaining. I mentioned to them that I had been told by the doctor that I was going to have a few spots tattooed on my face and the back of my head for alignment of the radiation. They said that they weren't actually inking my face, since the mask is sufficient for alignment. But if I'm a big fan of Mike Tyson, Dave (one of the technicians) is quite good at inking, and we can talk after the treatment. I told them I was a little disappointed since I thought they were going to ink a snake around my neck.

The mask formation was pretty relaxing as they molded the gridded strips to my face while taking a CAT scan. The next step is to align the image of the CAT scan with the original MRI to map out the spots where they will aim the radiation during my treatment. In order for the mask to stay tight and accurate, I had to shave the beard I'd grown post surgery, much to the pleasure of my mom. I was also told that I shouldn't shave my head since the hair I have now will help maintain the tension of the mask. Now that the mask has been made, I am scheduled to begin treatment in one week!

After the mask making, I spoke briefly with the nurse and doctor in charge of my initial treatment. The doctor is "old school" and mentioned again that he was going to put me on high doses of steroids during the treatment in order to keep the brain swelling down. While one of the side-effects of steroids is becoming the Caleefwonyuh governor, the other effects abused me post-surgery in a rough way. So I had to plant my feet and tell him that other doctors had told me it wasn't necessary and we could wait and see if the swelling occurs before starting the steroids. He finally agreed that since the gap left by the scooped part of the tumor is kinda large, it can probably handle any swelling in the brain. And incidentally, since that "hole" is so big, I'm thinking that after the treatment I might try filling it with gumballs and charging $0.25 each. Still working on the delivery details....

I then spoke with them about the treatment and how to best take care of myself while it was happening. The nurse suggested certain creams to treat my skin from being too fried by the radiation. We also heard some interesting news about how large my tumor might have been, and how much remained. It seemed like the doctor thought that much of the size of the object seen in the original MRI was due to a large cyst, and that part of the visible mass was due to dead cells. He seemed to indicate that a large portion of the tumor was removed from surgery. The hope is that the remaining gumball bowl will shrink over the next five weeks, so that when the radiation treatment changes from a wide field attack to a more focused "smart bomb", the area of the target will be smaller. In order to see if that is the case, I've been scheduled for another MRI measurement after the first 4 weeks of treatment. Fingers still crossed.

I also found out recently that the cells from my tumor were not sensitive to Tarceva, which means I will not be taking that extra chemo. That is a somewhat mixed result for me. The plus is that I don't have to worry about pulling in extra side-effects. The minus is that there might be only one treatment that will keep my tumor at bay, instead of the possibility of multiple ways to stop its growth. And I won't know about its sensitivity to Temodar until I get the 4 week MRI result.

After my radiation appointment, my freighbor and I headed down to my company to say "howdy" to the crew there that I haven't seen for almost a month. It was pretty amazing to see everyone, and even my freighbor mentioned that she gets why I've worked there so long, given how fantastic (as well as incredibly sarcastic) all of my co-workers are. I'm hoping now that the treatment doesn't knock me down too much and I'll be able to find enough time to work on some of the exciting projects (but will be "oh too tired" to work on some of the other things, of course).

The Gift

A few days ago "Logan" took an all day hike with friends. (He's feeling great, so, why not?) Upon his return, he found a notice on his door from a floral delivery service telling him that a bouquet for him had been delivered to his neighbor in his absence.

The flowers—which were from a relative—came with an added bonus: a copy of
Playboy magazine.

Not only did this prompt a bit of embarrassment and consternation about what the neighbor might think (although, really, this is a
San Francisco neighbor we're talkin' about), but also, since we're a naturally exegetical bunch, it sparked a round of email speculations about 'what it might mean.' Was there an article about brain tumors in this particular issue? ("Logan" reports: there's one about G-spots, but as far as he can tell the "g" does not stand for glioblastoma). Was it a standard SF bouquet for straight bachelor convalescents? (In fact, it seems to have been a special order). An instance of the time-honored tradition of giving the gift you'd like to receive? Or, perhaps, a sly joke about which 'brain' the tumor has attacked?

We had a lot of fun batting this one around, much more fun than had we just taken it at face value as a gift meant simply to 'raise his spirits' (so to speak). And consequently, it was a gift that gave us all a chance to laugh and joke in anxious times.

That's a really good gift.

Thursday, July 23, 2009

I can finally be "The Decider"

It's all coming together. Yesterday I heard back from "Dr. B" who had spoken to the main surgeon at UCSF about whether it would be wise to dig back in. Conclusion? Even the UCSF surgeon didn't think he could remove too much more, and I'm probably better off starting some treatment as soon as possible. "Dr. B" also spoke with several people about their thoughts on my joining a trial involving taking Avastin and Tarceva along with the Temodar. The general opinion there was that in my case it's probably not worth it yet. So what does this all mean? Essentially the amazing UCSF docs supported the treatment assigned by my fantastic Kaiser team.

There was a slight hiccup when I met with the radiation oncologist at the new Kaiser radiation center. I won't go into too much detail, but after talking to the doctor and nurse there, I had lost about 20 points on my attitude score (almost dropping to the negative). When I got home, I called my Kaiser NP, and she picked me back up. The main concern was that it was hard to see who was going to be in charge of making decisions about the path of my treatment: the new radiation oncologist, the one replacing him when he moves back to LA, or the oncologists that I first met with? Well folks, it looks like it's going to be the two experts from Redwood City, so any questions or concerns I have I can direct through them.

Of course, now that I've basically decided what treatment I'm comfortable with, I'm anxious to get it started. But before they can start it, I need to have a mask made to align the aim of the radiation. My brother hopes they'll give me the mask so that I can use that and my possible radiation hair loss as an excellent Halloween costume next year....

I will admit that the time between now and the start of the radiation is a little frustrating for me. Physically I've improved a ton since the surgery, and the tumor itself has essentially no physical effect on me (unless it grows back). But not knowing how the treatment will effect me keeps me from jumping back into work or training for a marathon (oh...wait...I forgot that I never liked running).

The rest of my family left this morning after completely taking care of me during the rough times after the surgery. So if anyone else visits me soon, you'll get to see how clean my apartment is! For now. I'm also planning on dragging them back if the treatment knocks me down.

In the meantime, I wanted to thank all of you for the great messages and offers to help me out. Unfortunately the tumor didn't quite remove some of my personality flaws (like stupidly feeling guilty when I get help from someone - even though I also appreciate it), but my freighbor and H-Lo are beating some sense into me since I have definitely needed help. And when the treatment finally starts up, there's a chance that the need will return.

Wednesday, July 22, 2009

What do you see when you're on the GG Bridge?

UCSF (arr arr arr).

Today we met with "Dr. B" at UCSF, an excellent neuro oncologist (and, according to my mom, pretty attractive as well). He described to us in mostly understandable detail all of the approaches to the treatment that he generally offers his patients, and also some of the approaches currently being presented in clinical trials. (Warning for my co-worker physicists: apparently word about our job gets out to our doctors and so they often say "you probably understand how this blah-de-blah works're a physicist." Well it ain't always true!)

One of the main questions I had for him was whether I should try adding Avastin to my chemo to improve my odds. The conversation with "Dr. B" essentially reinforced the"no Avastin" plan set up by my Kaiser doctor, with the knowledge that if this treatment isn't successful, I can always try Avastin later.

One of the other questions was whether or not I should return to surgery to have more tumor removed. "Dr. B" is planning to show my MRI results to the top UCSF surgeon tomorrow and get his opinion, but his initial instinct was that additional surgery was probably not necessary and starting my treatment earlier is likely more important. Of course, if additional surgery is recommended by the UCSF surgeon, it could be a slight challenge to get Kaiser to agree and pay for it....

Tomorrow I will be meeting with the Kaiser radiation oncologist to talk about his part of the plan. The radiation ultimately is what's going to kill most of the rest of my tumor, but maybe I'll take advantage of this chance and bring some vegetables along too.

Tuesday, July 21, 2009

Finally, an answer....

No, not for how to confidently treat this aggressive tumor. For those of you who've known me for awhile, you no doubt have heard my obsession with the difference between the chocolate chip cookies I make and the cookies my mom makes in Michigan. Hers were always thin and crispy (my favorite) whereas mine would always end up thicker and more cake-like. And before you send me several messages describing the hundreds of ideas as to why this is the case, know that I've been examining this for over 10 years. It was not a difference in recipe. It was not a difference in the cookie sheets. It was not a difference in the egg size. It was not a difference in how careful the chef is.

My mother, out here taking care of me as I head towards the treatment, decided to experiment. She made several batches of cookies, each with different positions and baked with different temperatures. The conclusion? What it seems to be, oh cookie lovers, is the oven style. I have had a gas oven since I've been in California. She has had an electric oven my entire life.

Thinking of the physics, it seems the electric oven is more likely to heat the cookie sheet more directly whereas the gas oven heats the air more uniformly. When the cookie sheet is hot, the cookies spread out before baking. One possible solution in the gas oven is to decrease the heat of the oven, and place the sheet closer to the source of gas. However, the only real solution is to buy an electric oven....sigh....

As for the tumor, I have been lucky enough to have several people in contact with several experts in this field (including, believe it or not, a Canajun we'll call "B" who actually works with one of the potential treatment drugs). Tomorrow I'll be meeting with a doctor at UCSF, and will soon be hearing back from a few non-Cali doctors offering their opinions as well. I am finally closing in on making a decision.

Monday, July 20, 2009

On your mark...get set....

This is the week. The "standard" treatment is scheduled to start next week, so if I'm going to go "radical" somehow (in a clinic or adding more chemo), I need to find out what the options are and whether to try something different. My brother and I made the phone calls, left the messages, and now we wait.

One of the most important treatments for this, I'm told, is positive mental focus. This weekend was amazing and definitely reminded me why getting through this (in good shape) is the way I gotta go. My physical health has improved a lot since the surgery, so I finally had time to go outside and hang out with lots of my wonderful friends here in SF. But once the treatment begins, there's a chance the physical health will decline again. For that reason, I've been creating a list of motivations to keep me pointed in the right direction. Of course, given my general lack of organization, that list consists of things that I've told various friends and family members. So...if any of you have time to shoot me an e-mail to remind me what I said, it would definitely help. Otherwise, I'll have to pull out some lame excuse for forgetting....

Saturday, July 18, 2009

Temodar, Avastin, Tarceva...oh my!!!

Yesterday I had my appointment with my neuro oncology team down at Kaiser Redwood City. It is Dr. Peak along with an amazing specialized Nurse Practitioner, Mady Stovall. They spoke with us for almost 4 hours answering questions and explaining what they considered to be the best treatment. They made us all feel pretty optimistic about the possibility of stopping this thing from taking over!

Essentially the latest standard treatment could work well, depending on whether my tumor had a certain "characteristic". How would this work? I would go through radiation treatment every day for 6 weeks while simultaneously taking Temodar. A couple of weeks after that I would have another MRI taken to check the status of the tumor. If it looks good, then I would continue the Temodar at a lower rate for maybe a couple more years, depending on how it effects me. If not...then I'm reaching in with my fingers and pulling it out.

There are some other options that I need to think about. I could add Avastin to my arsenal, though it could effect my life quality in other ways. In addition, if I add it now, and things don't work, it leaves fewer options for the future. There are also two clinical trials I might be able to join at UCSF. One of them involves the new vaccine style treatment, which could have great potential, but would definitely require additional surgery.

I do need to decide if digging in there again is a good or bad idea. The team at Kaiser thinks a good amount was removed and we should move on as soon as possible. I'm kinda hoping the docs at UCSF agree....

Meantime, I wanted to thank everyone again SO much for the kind messages and offers to help. It's definitely motivating me in the right direction. For now, my family has been taking care of me, and my physical status is improving (just in time to get knocked around by treatment!), but I'll definitely love getting help as the adventure continues....

Thursday, July 16, 2009

Fruit Flies

When I arrived at my brother's place last Saturday, Mom had done a thorough cleaning of his kitchen and bathrooms, and was in full battle mode against the fruit flies that had colonized his place in his absence. She had set traps, using some ancient Manischewitz (from a Passover celebration looooong gone by) in plastic tubs covered with saran wrap; within a few hours there were several hundred in each trap. But we were still swatting at them. Having waged my own war against fruit flies at home just last year--and done the requisite internet research on the problem--I suggested shallower traps (to drown them), a stricter regime of counter and drain cleaning (Mom was happy to oblige on this one), removal or tight enclosure of any and all fruit fly tempting victuals (sugar, vinegar, juice, fruits, flowers...and the very slimy/nasty compost container sitting just outside the kitchen door), and a thorough laundering of towels, tablecloth, and napkins. After two more days, the fruit fly population was down to one or two individuals. Dare we say, Mission Accomplished?

We realized, collectively, that our battle against this small enemy was a metaphor (or maybe microcosm?--my lit/crit friends can weigh in on this) for the treatment against the tumor. The surgery, as a first line of attack, took out 80% of the tumor. But to get rid of the rest, a combination of creative, persistent, and determined measures will be necessary. And, like the fruit flies, it may never fully disappear--at least, not until the medical equivalent of a very cold winter is brought to bear upon the bugger.

"Eet eez NOT ah toomah" - Gov. Arnie Schwarzenegger

Of course this is something I never expected would happen to me. A mild but constant headache, forgetting a few names and words. Neither of these directly drove me past my typical (male?) resistance to seeking medical help. But as time went on, more words and names were dropped and my stress and anxiety grew. I was in charge of a few projects at work, and felt like I was barely keeping up with the subjects I was discussing with co-workers. Slowly I started to expose my situation to a few friends and family. The response was generally optimistic - don't we all forget words as we get older, and maybe it's worse for you because of anxiety? I should interject now to say that nobody should feel any guilt for those conversations! However, a co-worker and friend reminded me of a friend of his who had similar issues and discovered its cause was "the toomah". Somehow I managed to dismiss that possibility within minutes.

When my amazing "freighbor" heard me talk about my concern, she insisted I go see a doctor. My regular doctor was on vacation, and the doctor I went to see tried to convince me that the headache was due to allergies. And the wordloss? It's natural when you get older!

Except by this time I was forgetting names like "Joe Biden" (who I worked for during the election), the names of the Beatles, and the name of the movie "Saturday Night Fever". That last one should've convinced me something was really wrong.

One week later, at work, my day rapidly collapsed. I had 3 meetings in a row involving actual thinking and discussion, and I could barely keep up. My feeling of mental weakness in the conversations added to my anxiety. In the late afternoon I tried laying down to calm myself, but it didn't seem to help at all. Eventually I called a super amazing friend, let's call her "H-Lo", to ask her for help. During the conversation I completely broke down, and she told me that since she was headed near my company for a class she's taking, she would stop by to chat for a bit. She also called me on the way down to calm me down and let me know she was headed over. When she got here, I walked out to meet her, and when I got to her car, I broke down again. She "suggested" that maybe we should go to the hospital to have me checked out. She even countered my resistance to that by telling me it's no big deal. They'll check me out and if there's nothing to worry about, they can refer me to a therapist instead. I found out later that her instincts were incredible. She had essentially decided that she was going to be taking me to the hospital before she even left San Francisco. She even called a friend of hers, Shannon, to find out how to get to the Stanford Hospital (incidentally, Shannon has also been an incredible source of info to help find the best possible doctors to try to contact). She "suggested" taking me to the hospital, in spite of my mild resistance.

My medical plan is through Kaiser, so we headed to the ER in Redwood City. The whole time I questioned if it made sense to be there, and she continued to reassure me that at the very least I'll get all the physical stuff checked out, and if it's nothing, then I'll know. I was set up for checking my heart rate and getting a CAT scan. It was the CAT scan that first identified the tumor. They then sent me in for a MRI to determine whether I needed surgery that night or could wait until the next morning. In the meantime, H-Lo was investigating the likely surgeon to make sure staying here was the best option. It turned out that Kaiser RC has a fairly well known and solid neuroscience department with excellent doctors. And the surgeon I was assigned to, Dr. William Sheridan, is the head of the department. Amazingly, Kaiser RC was probably a better choice than Stanford in this case

The ER doc came by again to see how I was feeling, and he showed us the MRI image. That was quite a shock. The tumor was about 5 cm, and it looked like it was pushing some of the left brain over to the right. I only mention this so that I can now use it as an excuse for anything I said or did prior to that period that people might have found offensive or idiotic....

The rest of the night was clearly intense. I needed to call my family and friends, and in the meantime, H-Lo continued to aggressively manage the care that Kaiser was going to give me. She ended up staying with me that night, and the next morning the rest of the adventure began.
I want to thank (publically) my wonderful family and friends who all stepped out at the time and since to help me move forward to the best treatment, and of course everyone who has simply shot me a line or a card. That alone keeps me sane and motivated (no comment from those who disagree about my sanity). I will try to keep this up to date with where things stand and where they are going.

Fingers are crossed.

Tuesday, July 14, 2009

The Bad News

On July 7 2009 my youngest brother -- we're going to give him the pseudonym Wolverine -- was diagnosed with a brain tumor at the age of 40. Nothing prepares you for the 7 am phone call from your mother telling you that there's a possibility you might never see your baby brother again. They operated on him the next day, and the outcome from the surgery was the best we could hope for--full physical functionality, no damage to speech, 80% of the tumor removed. Adult members of the family mobilized and flew from Midwest and East Coast to the West Coast to be with him. Friends brought support, love, and obscene amounts of chocolate. We spent a long weekend waiting to find out the results of the pathology tests on the tumor, doing what modern adults do when faced with uncertainty--we obsessively scoured the internet for information, taking notes, building hope, writing down questions.

When we were finally able to make contact with the surgeon, we got the really bad news: it was a grade four glioblastoma multiforme tumor, "aggressive". Now the networks of friends with contacts in the medical field sprung into action, researching treatments, doctors, and facilities, and offering help in every possible way.

We are at the beginning of a long, arduous journey into unknown territory. I told my baby brother I wanted to start this blog so that in ten, twenty, thirty years he and I and the rest of the family will be able to look back on this challenging time and revel in having helped him to survive.