My Brother

My brother has just been diagnosed with a brain tumor. It seems the plan is to take it out soon. They are currently looking for a very good brain surgeon hopefully somewhere near the Mississippi Gulf Coast. Anyone have any recommendations?

Team Abscess

I have just signed up to do the 50 mile bike Silicon Valley Brain Tumor Ride on September 19th. I’ve never ridden a half century, and this ride isn’t a particularly exciting route, but the cause is meaningful to me.

No, I don’t have a brain tumor, but for a week or two, everyone thought I did, and what with having the brain surgery, enormous swelling and pressure, bleeding, seizures, and associated neurological deficits related to having a mass in my brain, well, I have a pretty good idea of what it might be like to have one. My heart goes out to the people I saw during my month in the Stanford Neurosurgery ward – patients like me, getting their biopsy results, but who did not have the miraculous good fortune that I had to hear that the “tumor” was in fact a pyogenic abscess. While I would not wish a brain abscess on anyone, it is a much better diagnosis than a brain tumor, because although great strides have been made in treating other forms of cancer, improvements in imaging, surgery and chemotherapy, have not improved brain tumor outcomes as a whole over the past 70+ years.

This ride is a way for me to show my support for people dealing with brain tumors, whether as patients or caregivers. If you would like to join me on the ride, I’d love some company. Rusty suggests “Team Abscess” for a team name. (I kind of liked “Team Hole in the Head”). Of course, donations, are welcome, too. Mostly though, I am just glad to be able to participate in the ride myself.

PNDP Post Mortem Post

Thank you for making the PNDP such a fun party! (So much fun that it has taken me this long to recover enough to write up this post). We are so glad that you were able to join us and help us celebrate. It was wonderful to see you all, although many of you I only got to see for a few minutes. Seeing everyone was the part I was most looking forward to, but afterwards I realized that, just like at my wedding, I didn’t get to spend enough time with anyone. The math is 5 hours = 300 minutes, divided by 150 -200 people equals 2 minutes max a person, which just isn’t long enough at all. So, we will just have to see you all again, soon.

How was the party? We don’t entertain much, and it turns out it takes a village to throw a big party, even a pretty simple one. After having half of Los Gatos searching for a taco truck for us, Louise Millman (via a trail of Art Docents) came up with Tacos Acosta. After Karla Maxfield, our bilingual friend and neighbor, made the arrangements by telephone, we met Sergio and his family when they set up their grill in our driveway. Lovely people, great tacos, doesn’t get better than that.

Speaking of my friend Louise Millman, I can not thank her enough. As a restauranteur (Willow Street, Main Street Burgers) and caterer, she not only found me a taco truck, but calmed me down when I called her for party planning advice (“Louise, what goes with tacos, cake and gummy brains?”), and then not only provided tables, umbrellas, ice, ice buckets, coolers, trash cans, tables, and gluten-free banana cupcakes, but delivered all of that, too. Louise rocks! And she makes it look easy.

Karla Maxfield not only served as our translator, but also asked Brett and Martha, Karla’s co-workers at the Children’s Discovery Museum in San Jose, to help with the t-shirts. They came to the party 15 minutes early, and we set up the tables and I taught them how to pull a silkscreen print onto a shirt. For the better part of 5 hours, they helped people make shirts, and people then used fabric pens to add their own personal touches. Some filled in the outline of my brain with anatomical details, others left it empty (which is pretty accurate), or made it into a smiley face or design of their choice. These two worked very hard, taking short breaks to jump in the bouncy house with the other young people. By the end of the party, Brett was so jazzed about silkscreening, that he wants to get his own set up. He also took my old dial-a-flow iv lines for use in his garden as drip watering tubing. Seemed like the perfect day to empty out the medical supplies box in my basement.

When people weren’t getting tacos, or making shirts, or jumping, they seemed to be sitting or standing around talking, eating and drinking. Thanks to Karl Eisenhower, Rusty’s friend from elementary school who flew out from the D.C. area for the party, we had strong 3-2-1 margaritas. Other people brought wine, which was also appreciated. Melody Tebbs and Marcella David (who flew in from Spokane and Iowa, respectively) turned my island into a beautiful cheese and fruit display, which they kept stocked throughout the day. They also served as greeters and hostesses. Our children each got a chance to pick a favorite snack food for the party, so we had goldfish, Chex mix, and Pirate Booty. For my choice, I picked my favorite thing: cake from Icing on the Cake. And of course we had gummy brains.

Most importantly, though, we had people at the party. Thank you so very much to all of you who came to the party, whether from near or far. Friends from Marin, Spokane, Virginia, Los Angeles, Iowa City, San Francisco, Berkeley, Stanford and England joined us. Many others walked to the party. A few days later, I was talking to someone at school and she commented that we must have had a lot of people from Stanford there, because she didn’t recognize quite a few of the guests. It then dawned on me that guests came from many parts of our lives: family, neighbors, my family’s neighbors, doctors, college classmates (both me and Rusty), our children’s friends and families, women from my book club, Rusty’s former work colleagues from two different companies, our favorite architect, teachers and the principal from our children’s school, fellow Art Docents, members of the LGEF board on which I serve, my personal trainer, law school classmates from Michigan, our piano teacher, Lego team members, and on and on. All these people helped us get through the past year, in one way or another, and of course there were many, many more who helped but were not at the party. The guests were a visible reminder of how lucky we are, how rich and varied our lives have been, and how fortunate we have been to meet so many fantastic human beings along the way. We have been very, very lucky indeed.

In the end, we had a blast at the party, and hope you did, too.

Ada Lovelace Day 2010

Today is Ada Lovelace Day, a day on which bloggers are asked to post an article honoring women in science and technology. I have written before about the all-woman Allergy Team (including Dr. Kari Nadeau, Yael Gernez, Neha Reshamwala and Grace Yu) before, and how much I like and respect them, both as people and as doctors. However, I think it is because those are not actually two separate things (being a person and being a doctor), that this team is so exceptional. Yes, the Nadeau Lab is conducting interesting immunology research regarding T cells who are behaving badly, yes their new blood test for allergy responses seems to me to be much, much more effective than existing tests, yes they publish, teach and do all those other things that all academics, male or female, are expected to do.

What makes this team exceptional is just that: teamwork. The doctors, nurses and staff work together as a team, and they see the doctor-patient relationship as a team. This collaborative approach requires mutual respect and communication. For example, in my experience, email is the most effective means of doctor-patient communication, offering faster and better patient care while using less doctor time more efficiently. Without exception, every member of this team has emailed me, (and every single doctor who has ever provided us with an email address has been a woman). I hope and believe that this kind of care represents the future of medicine, and I am enormously grateful to Dr. Kari Nadeau and the women of the Allergy Team.

PNDP!!!

Save the date: Sunday, May 16th will be the PNDP.

Who’s invited? You are. If you ever read this blog, brought a meal, visited in the hospital, set up a prayer circle (in Mississippi or Bolivia or East San Jose…), sent a card or flowers or comment or email, took our children for a playdate or gave them a ride, organized a website for help, prescribed me drugs (or better yet, took me off of them), gave me official or unofficial medical advice, ran an errand, did our shopping, listened to my chest or my whining, took over my volunteer duties, sent me energy through a drum circle or meditation practice, helped make me a vase or a poster, sent Tibetan Buddhist prayer flags or a CD of soothing music for the dog, thought good thoughts, brought cupcakes or blueberries or gumdrops or tea or Chinese herbal medicines, entertained me with books or magazines or art supplies, listened when I was incomprehensible or frustrated or boring and no fun at all, walked our dog, or demonstrated kindness in any other way — It worked! Now come let us show you how much we appreciate all that you have done for us.

We aren’t too sure of the specifics yet, although of course children will be welcome and there will be cake and tacos and fun things to do and probably lots of people. Post a comment or send an email and we’ll make sure to send you an evite when we nail things down a bit more. If you want to come, we want you here.

Thanks for everything. We are so grateful to have had your support over the past year.

*PNDP = Pokie’s Not Dead Party. We decided to hold a party the day I was told I had a brain tumor. We figured it would either be in a couple of weeks, if I was dying quickly, or after treatment. We are glad to have had to delay it until after treatment.

They Call Me Pokie for a Reason

There have been a few consistent themes throughout this blog and one of them is that diagnostic tests and imaging always come back inconclusive (see post below). Another is that as soon as we post something, it becomes out of date. And finally, everything I do takes a while (which is why Rusty gave me the nickname “Pokie” almost 20 years ago) – I don’t have a single fast twitch muscle in my body and it turns out even my immune system takes a while to fire itself up.

After my inconclusive tests on Thursday, I woke up Monday morning and, well, I am too lazy to write it up again, so with the magic of cut and paste, here is the email I sent to the Packard Allergy team:

“Good morning!

Well, it took a while, but my immune system finally found the drugs from the prick test. To our surprise I woke up this morning (about 96 hours later) with intensely itchy, small, red, raised bumps on my back
corresponding to some of the abx [antibiotics] tests. They match up to either tests 1, 2 and 4, or 2, 3 and 5 (Rusty isn’t sure if there were 4 or 5 in the first row, and where the top is). I see from the ACAAI website that delayed reactions do not necessarily indicate allergy, but since only the drug tests – and only some of those – are raised and itchy, I am guessing that mine do (an adaptive immune system/ CD 4 + T cell mediated thing???). Anyways, I am sorry to bother you, but the ACAAI site said to tell your doctor if you experience a delayed reaction to a prick test (although it actually meant 24-48 hours, not 4 days, later). Maybe this is normal, although I don’t remember it happening before. Anyways, this is simply an FYI – I am not worried or in distress and if it keeps itching I will use some steroid cream and maybe take an antihistamine.

Lovely to see you all last week. It is always a pleasure to meet with such an exceptional team, and I look forward to seeing you again in May.”

I didn’t need to take any antihistamines or steroids, and the bumps resolved over the next 24 hours or so (actually, a few much smaller and less itchy ones appeared later that morning on the miscellaneous allergy test side of my back, but it would have been even more hopeless to try to figure out which those were). This generated a flurry of emails with the Allergy team, who are always quick to respond to email. They agreed it was a T cell mediated reaction and pulled together information so we could try to figure out which drugs were causing reactions.

However, we still don’t know exactly which drugs caused the reactions: either Penicillin G, Ceftriaxone, and Aztreonam or, more likely IMHO, Ceftriaxone, Cefepime and Vancomycin. The team also conducted blood tests for Pen G and Bactrim (a sulfa drug which I reacted to over 10 years ago, but in a more traditional rash and wheel way). These showed some response to Pen G (which I haven’t had for over 40 years) but not to Bactrim. So the one thing we know is that the antibiotic most likely to be given in the ER or post-surgery as a prophylactic (Ceftriaxone/Rocephin) is definitely on the Do Not Use list. My sister, the nurse, suggests that we should just go forward assuming allergy to all of them. That seem like the safest strategy, with Plan A being staying healthy. If I do develop a sinus infection though, the Allergy Team wants me to treat it aggressively with antibiotics (after checking in with them first) in order to avoid future brain abscesses. I’m all for that, too.

A note about the Allergy Team: We love them. They are so nice, and so responsive. Just great human beings. For some reason, they all ended up in my exam room at the same time and after they had all given me hugs and joked about having annual reunions, they said they should have “Team Greer” t-shirts made up. This was really funny to me, because I had meant to give them t-shirts that morning, but had messed up when burning the screen for the design I made for them not once, but twice, the night before. I’m going to try again (maybe tweak the design, add “Team Greer” on the back now). Katy likes the design and I hope the Allergy team will wear them, at least to clean their garages or bathe their dogs or oil their bike chains.

Not Allergic to Anything

Elizabeth had her prick test for allergies today.  According to that test, she isn’t allergic to anything. This is actually what we expected.  The blood tests that they are also going to perform are the only tests that actually detect with the type of allergic reactions to which Elizabeth is prone.  Elizabeth can explain this in great detail from what she has learned in her immunology text she is reading.

A Biologist? A Chemist? The Power of the Internets

This morning we had our regularly scheduled appointment with Stanford Infectious Disease. Because I had my MRI a few weeks ago and already knew the results (good), we were anticipating a fairly uneventful appointment (also good), and were not disappointed. Bottom line: I get to stay off of drugs and have an MRI, blood work and another appointment in 3 months.

The longer version: We were at Tahoe enjoying the skiing and came back last night for this appointment. Unfortunately, the blood lab in the clinics at Stanford doesn’t open until 7:30 am and apparently is busy first thing in the morning with people who have to fast before their blood draw and want to eat breakfast. Even with STAT orders, that makes it tough to get results back in time for an 8:30 am appointment. I learned that the main clinical lab at the hospital is open 24/7 so I went up there at 10 pm last night and had my blood drawn. It was strange to look into the large room where so much of my blood has gone over the past year. Anyways, it worked out well and the results were ready for my appointment this morning.

The results were normal (as expected), and my HHV6 tests did not show signs of current active infection (also as expected, at least by me). As result, I will not be placed on Valcyte (an antiviral medication). Dr. Tang, like many other ID and internal medicine doctors, thinks that avoiding drugs generally is a good idea for me. If I ever start to develop a DRESS/DIHS reaction again, Dr. Jose Montoya (the attending who saw me this morning, the The Man for Valcyte for HHV6) suggested that I be tested for HHV6 and consider Valcyte treatment at that time. That makes sense to me, as every DRESS reaction I had was preceded by a week of feeling like I was coming down with a virus. (This was interesting news to Dr. Montoya). Hopefully, if it happens again, Valcyte could help reduce or prevent a full-on DRESS/DIHS attack. This is all highly speculative, however, because although HHV6 has been linked to DIHS, no one seems to have tried using antivirals to treat it.

At least 3 doctors (Herrara, Schoolnik and Montoya) have mentioned that I metabolized the Vanco very “strangely” (sometimes with an accusatory tone, as if I had intentionally used thought control to mess with my metabolism. You know, if I could do that, I would weigh a lot less). I have assumed that they meant that my trough levels repeatedly failed to rise, despite increased doses, until they finally shot up (and within 48 hours I was in the NCOR). My guess was that my body was working really hard to get rid of the Vanco (which it viewed as poison), right up to the point when the DIHS kicked in and my body just couldn’t do it any longer. In other words, my body fought the Vanco for as long as it could, and when it couldn’t fight any longer, Vanco tried to kill me. Neither Dr. Tang or Montoya had any better explanation, but did say that in young, healthy people, it can be hard to get troughs up, even by increasing the dose to the very high levels I had.

At the end of the appointment I noted that my Plan A is to stay healthy and never take drugs again, and Plan B is to avoid all antibiotics that mess with cell wall membranes (messing with DNA and RNA is fine). I had noticed that all of my strong allergies were to drugs that messed with cell walls (penicillins, sulfas, carbapenems, cephalosporins, aztreonam and vancomycin). Dr. Montoya was very startled and asked “What are you? A biologist? A chemist?” to which Dr. Tang said “No, she’s a lawyer.” That surprised him even more. (I told him I was really art teacher, but know how to use Google). Turns out Dr. Montoya is studying cell wall membranes and got very, very excited, while Dr. Tang wrote down notes to review my files. I guess no one had noticed this pattern in my charts before. Maybe some patient in the future will benefit from my off-hand observation and comment. I would like that.

So now I get to stay off drugs, get MRI’s for a year, and plan a party. How does May look for you?

Like a Raisin

About a year ago, when the doctors were explaining (in very small words so they would be sure I understood) what would happen to the abscess as I took the antibiotics, I pictured the abscess shrinking and shriveling up like a raisin in my brain; it would never disappear altogether, but would get smaller, fill in and crumple up to a bit of scar tissue. Things didn’t work out exactly like the doctors imagined they would, as my metabolism proved to be “unusual” and the abscess didn’t react in a typical fashion. Since October, there had been no visible change in the abscess, which was smaller, but still round and not filled in – not raisin-like at all.

I didn’t feel any neurological or physical changes when I went off of the Avelox. That did not surprise me, as I did not expect to notice anything for 1-3 weeks, based on my earlier drug holidays. What surprised me was that after I stopped taking the antihistamines a week later, I felt not so good. The sporadic rashing did not surprise me, but the return of old aches and pains did. I had not thought of those as being immune-related (or in any case, not related to histamines – I did know that glucocorticoid steroids help). Those symptoms lasted about a week and then got better.

Lagging a few days behind the joint pains and swelling, the left side of my brain seemed to be having some swelling as I experienced pressure around my left eye socket, pressure going around turns in cars, and some loss of appetite and weight loss (if you could bottle brain swelling for that purpose alone, you’d be rich). None of it serious, but none of it had been there a month earlier. After Rusty pitched a fit, I spoke to the Stanford ID Clinic nurse, and the Stanford on-call doctor, and Dr. Kessler, and Dr. Fisher, my neurologist. Option A (ID’s idea) was to go to the emergency room, where I would be admitted and given an MRI and talk to ID, and Option B (my own idea) was to move my MRI up a week to the following morning, look at it, and then decide whether to go to the hospital. I chose Option B.

I actually woke up the next morning feeling much less pressure, and after a smooth and bruiseless MRI (the doctors have switched to a new brand of gadolinium contrast which seems thinner. I like it much better as I don’t end up black and blue inside my elbow. Yay!), we looked at the images and decided we didn’t see anything to concern us. A few hours later, Dr. Fisher emailed the official reading to me (we love email – thank you Dr. Fisher) which stated that the abscess had actually gotten very slightly smaller. In addition, Dr. Barnes (our favorite neuroradiologist and the doctor with greatest amount of continuity on this case), let us know that he agreed with the official reading, and even more exciting to us, he saw that the abscess is starting to “collapse.” It is not so round and regular as it once was. Raisin-ification has finally begun. This was the best news we could possibly have received.

I spent the next 2 days beaming. Sure, I still have appointments and such over the next couple of months, but between getting off drugs and the abscess finally resolving, it feels like there really is a light at the end of the tunnel, and it’s getting pretty close. Now the image I have in my mind is of walking out of a tunnel into bright, warm sunshine.

Happy to Be Drug Free

Yesterday I woke up and did something – or rather, didn’t do something – that I haven’t done in a very long time: I didn’t take any drugs. Nor did I take any before bed, or at any other time during the day. This is something that I haven’t done in over a year. Yes, I have been on “drug holidays” before, and as Rusty posted below, I stopped taking the Avelox at the start of this year. However, I have always taken something else: first it was to relieve the pain (Advil, Tylenol, cold medications, Decadron), and later antihistamines of all sorts. and miscellaneous other things (like the horrid acetyl cysteine). I stayed on antihistamines for a week this time after stopping the Avelox, just to be sure that all of the drug was out of my system, and to make sure I didn’t react to the H1N1 vaccine I had earlier this week. Yesterday, I didn’t even take Zyrtec.

How’s it going? So far, pretty good. Maybe a touch of itchiness, but nothing serious. It would be too early for me to know if anything is going on in my brain, since I haven’t felt the swelling in the months and even subtle symptoms would likely take 2-3 weeks to develop. I’ll go back for another MRI in a few weeks to take a peek into my brain and see if the abscess is doing anything. Of course, these bugs fortunately were pretty lazy even when they were clearly still alive, so I don’t expect to see much change in the next MRI. However, no change is good.

It is really nice, although it feels a little odd at this point, to be drug free. I still have oodles of drugs and medical supplies stashed around the house, and I hope never to have to use any of them again. Actually, that isn’t quite true. I might use the Zyrtec for allergy relief in the future. But Decadron? No, thanks!