How it started.
I found out I had a brain tumor on January 7, 2006. The path to diagnosis was strange so let me try to explain.
Over the past year and a half I had a series of illnesses that didn't quite make sense. I had three episodes of terrible headaches accompanied by vomitting and generally feeling miserable that lasted for about a week each.
Each time it was a little different and each time I thought it was some strange virus. The first time was in the fall of 2004, the second in July of 2005 and the third in November of 2005. In November, the headaches and vomiting came and went over a week or so and then I started having other symptoms most notably vision problems.
Eventually I made it to an eye doctor who found that I had swelling in my optic nerve (edema). He said there were only a few reasons for this and none of them were good so he sent me to the Emergency Room at the Hospital of the University of Pennsylvania because they were the only hospital with a neurologist on staff on a Saturday.
At the hospital it wasn't possible to get an MRI but they could get a CT Scan which showed that I had some sort of 'mass' in my right frontal lobe. That's as much as they could tell me from the CT Scan and the neurologist guessed that it was a meningioma, an often benign tumor of the brain lining (meninges).
They prescribed Decadron (dexamethasone), a steroid for the swelling, told me to get an MRI as soon as possible, and referred me to a neurosurgeon, Dr. Kevin Judy.
Some Background
This isn't the first major medical crisis in my life. Twenty years ago to the month I was diagnosed with Acute Lymphocytic Leukemia. While no doctor is willing to draw a straight line of causation, there is definitely a pattern that my tumor fits for adults that received cranial radiation as children. In any case, it seems like there is a link between my leukemia treatment and my new tumor.
No Hawaii
The emergency room visit was three days before my girlfriend Michelle and I were supposed to leave for Hawaii. She was finishing a paper to present at an Arts and Humanities conference there and I was to be part of the Contact Improvisation demonstration.
Since I had seen a doctor about my condition already, I had scheduled an MRI right after my return from Hawaii. The doctors at the emergency room strongly advised us not to wait the two weeks I had scheduled to find out what was going on.
So, no Hawaii and no conference, much to our chagrin.
The MRI
Through some beurocratic miracle I was able to get an MRI at Temple University Hospital on Monday, January 9. I walked out with the film which had some pretty stunning images. Clearly there was something big that didn't belong. Among the images below is a sample image from the MRI. The perspective is from 'beneath' and the slice is near the top of my skull, so the tumor was mostly in the lining of the right frontal lobe.
Dr. Kevin Judy
Once I had the MRI, Dr. Judy's office scheduled an appointment for me. I saw him on Tuesday, January 17. He looked at the MRI films with us and told us that the tumor was atypical and he would not classify it simply as a meningioma.
Apparently there were portions of it that were not connected to the main mass and might be more troublesome. He felt that it was not worth doing a seperate biopsy and recommended a craniotomy as soon as possible.
A craniotomy means that a piece of the skull is removed for surgery and replaced afterwards. The skull fragment is now held in place with titanium plates and screws.
The in-between time
The rest of that week was the most difficult part of this entire episode. To start, the steroids had kicked in to my system and I was beginning to get moodier, sleepless, puffy, and constipated. Then there was the reality of brain surgery and all that that might mean.
Since I don't have health insurance and earn too much for medical assistance, much of that week was spent talking with the financial offices at the hospital and trying to come to an agreement about paying for surgery. The surgeon's office would not schedule the surgery until we had an agreement and the financial office was attempting to negotiate fees for the hospital, surgeon, and anesthesiologist. It will have to suffice it to say that it worked out about as well as it could have but it was an excruciating several days.
That week included many difficult conversations about legal, medical, and financial issues with friends and family. Michelle and I decided to give her power of attorney and medical power of attorney as well as turning over many more mundane responsibilities in the case that I was unable to function for some time after surgery. My family and friends stepped up as never before offering support in various ways and mostly just staying interested in what was going on.
I met the Brain Tumor Support Group at Jefferson Hospital in Philadelphia and from them and some others got further opinions on Dr. Judy and the proper course of action. I filed for refunds on the Hawaii trip and various other plans I has through January and February. I figured out my taxes and investigated any possibility of health insurance.
On Friday, January 20 the financial office proposed fees for the surgery, we accepted and surgery was scheduled for January 27. While I was scared of surgery and possible complications, this was the best news I could possibly have at the time and I slept the best I had since the emergency room visit.
More Time
The second week of waiting proved to be a blessing. While tension continued to brew about the surgery and what I might be facing, I had a full week of symptom-free time to wrap up work, legal issues, and schedule family visits. Michelle's steadfast support during this time is really what kept me together. Her perspective was that I was strong and quietly dealing with everything in front of me. Mine is that unless I had the rock solid foundation of our relationship and home, I'd have melted into a messy puddle of self-pity. Nevertheless, it was a difficult period for us as I turned inward and became increasingly moody and uncomfortable in my body due to medication and anxietyuring this time my family and friends continued to rally around me as well. Cards and calls came in from the most unexpected directions and prayers for healing were offered from around the country. Accepting this support has been a humbling and enlightening experience.
Preparing for surgery.
On Thursday, January 26, My dad and stepmom arrived from Ohio. The four of us went to the surgeon's office for my surgery prep visit. The major parts of this were having little circles shaved in my head to put 'lifesaver'-looking stickers on my skin and getting another MRI.
The stickers, I'm told, were used during surgery in a system the nurse called the 'stealth protocol' for aligning whatever markers the surgeon uses with the results of the MRI. I believe this is what's referred to as stereotactic surgery, but I'm not sure. The guidance machine was not in place in surgery before I went under.
After the hospital we went home and made dinner for Dad and Ina. In preparation for anestesia, I coudn't eat or drink anything after midnight. Since I already wasn't sleeping well and we had to check in at the hospital at 5:45 AM, it was a both a very short and long night for me.
Surgery Day
Arriving promptly at way-too-early, I registered and was soon whisked off to the prep room. A nurse checked all my vitals and reviewed what was coming up then the anestesiologist showed up and started filling my hands and arms with needles that would stay through my visit. Once I was wheeled to the operating room, there wasn’t too much to do for a long time. The nurses and anestesiologist were all friendly enough and they joked with me and admired my tattoos as I pondered my fate. Around 7:30 AM they put me under and I remember no more.
Sometime after noon I came to conciousness in the operating room. The memory is muddy but I remember trying to say that I couldn’t breathe. I don’t know if there was something going on or if it was just part of coming out of ‘sleep’, but the feeling passed and I started breathing normally. They rolled me to the ICU where I spent the day in a daze fading in and out of consciousness and trying desparately to keep my mouth moist without trigerring another round of vomiting bile.
Of course, I was most worried that I would no longer be ‘me’. Sometimes brain surgery is done with the patient conscious because there is great risk to damaging essential functions. My tumor in the right frontal lobe is not near anything considered to be ‘vital’ in terms of brain function. As the surgeon said, this part of the brain has only to do with personality and memory. But as soon as I was conscious I felt I was still ‘me’.
I could talk for very short periods almost immediately and I could see, though not very well right away. I could almost feel my personality or sense of humor or something that I knew was familiar as me. I wanted to make sure I could do times tables. Once I was convinced that I survived, well, there wasn’t much to do except rest.
Dr. Judy made a brief appearance and said that everything he could see had been removed. My family made an amazing showing for the day, my dad and stepmom in from Ohio, my brother and mother in from Lancaster County, and one of my rarely-seen paternal first cousins, Grace, came up from Baltimore. Michelle knitted almost an entire blanket while I was in surgery.
I quickly found out I couldn’t drink water no matter how dry my mouth was and had to satisfy myself with ‘swabbing’ my tongue for the first day. While a catheter is a certain sort of indignity, I was actually quite grateful for the freedom to simply lie in bed and not worry about the greater indignity of making my plumbing work myself.
As the day dragged on, my people drifted away until Michelle finally packed up for the night. My sleep was very light and came for a few hours at a time. Somewhere in the middle of the night I asked for ginger ale which ended up being a turning point. Ironically, the nurse could only find diet ginger ale but it seemed to give me energy nonetheless and calm the beast of my stomach somewhat. Somewhere around two in the morning I started to feel some strength return.
Pain
While in the ICU the first day I felt some faint pain in my head coming on and immediately asked for morphine. Later in the day when the same thing happened I accepted codeine instead and from that point on I experienced very little pain in the area of surgery. This was pretty amazing to me considering some of my other surgeries, including knee surgery involved painful recoveries. I guess this is because there were no joints involved, only bone and skin (and brain which has no pain receptors).
Beginning the day of surgery I did experience muscular pain in my jaw and I was told that one of the points of muscle attachment for the jaw had been cut. I'm still working on opening my mouth as wide as I used to and eating an apple is a challenge.
Of course I have been very gentle with me head since surgery, so I haven't given it a lot of opportunity to hurt. I took a few more codeine during my hospital stay, usually at night to help sleep as well, though the nurses' schedule required waking me anyway to check my vitals and reflexes or give me more meds.
After returning home I took codeine only once or twice and was glad to not need it. A greater source of pain than my head was my hips and pelvis after several days of lying in bed. I'll say more about my mobility later, but it was an unexpected twist that walking, standing, or sitting became very painful for several days. Of course, lying down again only made it worse later.
At The Hospital
After the first day in ICU, things began improving quickly. The night shift nurse helped me out with a sponge bath Saturday morning before they took me for my follow-up MRI. Usually they give you earplugs in the MRI but my bandage prevented that. Here is an image that approximately matches the original MRI image I posted and you can see the white stuff is gone. t day and was more dramatic once they removed the bandage, as you can see below.
Sunday morning at 4:30 AM an attending neurologist, Dr. Hunter, came in to the room and removed my bandage. Mostly I was glad because my head had been getting quite warm and I couldn't do anything about it. And it was a step to going home.
Sunday I had a lot more energy and attention. Ross and Janell, friends from Philly came by for a long visit and we spent hours asking Trivial Pursuit questions. They say I beat everyone and so my memory must be fine. Certainly the trivial things remain.
Every few hours a nurse would check my blood pressure, pulse, and temperature, then make sure I could raise my arms, push and pull my feet and answer a couple basic questions. I had to take Dilantin, an anti-seizure med, Zantac to counteract Decadron, and Colase, a stool softener. I was on fairly high doses of IV Decadron while in the hospital and this had a few complications including suppressing insulin production, so they checked my blood sugar a few times a day and I received a few insulin injections in addition to everything else.
Apparently leg blood clots are a big risk after brain surgery even for a young'n like me. There was a blood thinning agent injection to help with this and I had to wear these funny compression stockings that hooked up to a machine to squeeze my calves when I was lying down. Michelle also massaged my feet and made sure I was mobilizing my legs as much as possible. On Sunday evening we took a walk around the hospital floor and I was moving pretty well on my own.
There were suggestions that I might leave on Sunday, but I needed Dr. Judy's release and I was pretty sure he wasn't coming in on a Sunday. As it happened, I was released on Monday morning, less than three days from the end of surgery.
I visited physical therapy and finally got my IVs out and thankfully had my first bowel movement. A nurse made several 'crainy caps' for me to hide and protect my incision. Also, my hair was pretty disgusting and I wasn't allowed to wash it for several days to come. Dr. Judy dropped by with the official word on release and we were on our way.
Eyesight
My eyes have been gradually improving since surgery. Supposedly the swelling of the optic nerve may continue through the month, but it's definitely getting better even as I taper off the Decadron. On Sunday at the hospital I had the unsettling experience of putting my glasses on for the first time and discovering that my sight was more blurry than without them. This lasted for about a week, but by now (2 weeks out) my sight both with and without glasses is about what it was before all the trouble. If anything, I think my vision without glasses has improved a little.
At Home
Going home was a very happy thing. I still laid in bed for most of the next few days, but I could get around OK. My Dad took Michelle, Janell, Ina, and I out for dinner a few blocks away on Monday night. Dad and Ina stayed around until Tuesday making sure everything was going OK. Tim came down from New York on Wednesday to babysit me so Michelle could take a break. Most of the time, since the Decadron (and the coffee) keep me going, but you can see my eyes have big bags under them.
The Blizzard of 2006
On Saturday January 11 it finally started to snow. It's been an incredibly mild winter here in Philly like in most of the East, and the prediction for massive amounts of snow over the weekend was really exciting. We brought in plenty of firewood and stocked up on comfort food and checked the Winter Olympics schedule.
I was actually wandering around Chinatown when the first flurry hit, It was probably my longest solo walk but I happened to be in the niehgborhood and haven't had a chance to explore yet, so I took it. I found a bakery with steamed buns with beans in them and a fish shop with very fresh-looking fish and a corner filled with people protesting the Chinese government's treatment of Falun Gong practitioners. And lots of restaurants, though I wasn't hungry for once.
On Saturday evening we met up with Louise Gillete, an old friend of Michelle's who was celebrating surviving seven years longer than her doctors told her she would after having a brain tumor. She's had two surgeries and changed a lot about her life to keep living and making art. She's been calling and checking in and advising me since I found out about my tumor and she's an inspiration to anyone struggling with the strange and scary forces of the body. About a dozen people met up at a great pizza/calzone place and ate to our hearts content.
On Saturday night the storm hit for real and it thundered and lightninged and snowed all night long and by morning there was at least twelve inches of fresh wet snow on the ground. It kept snowing until about 1 PM and I don't know what the official accumulation was, but it sure was pretty. We stayed inside all day Sunday - I made omelettes and we listened to NPR and watched the Olympics and a yoga video. When it finally stopped snowing, I shovelled and salted the sidewalk, which I had to take very slowly, but it was worth it.
That night there was a special Valentine's Day restorative yoga class that Michelle and I went to. It was my first yoga class but it was very gentle and I could do most everything except I didn't try the headstand or shoulder stand, of course. Then we all went out for Thai food which was very tasty. It was a great weekend.
The Pathology Report
So I've been waiting for over two weeks to hear about the nature of the tumor. I've been assuming no news is good news and feeling pretty good about the whole thing.
Today I got a call from Dr. Judy and he gave me the summary of the report. It was not the good news I was hoping for. The cells are a mixture oligodendroglioma and astrocytoma. A mixed tumor is usually called a 'mixed glioma' and this mixture in particular is called an oligoastrocytoma. Dr. Judy told me they graded the tumor at III, which is malignant and the path report I got a hold of later actually says grade III/IV, which is a very aggresive malignancy.
The American Brain Tumor Association has a lot of good and accesible information about brain tumors if you would like to learn more.
Dr. Judy referred me to both a neuro-oncologist and a radiation oncologist to address chemo and radiation options. He said the typical treatment is one week of Temodar for four months and radiation. However, since I had cranial radiation already, I might not be able to have any more. Apparently there is a maximum amount of radiation one should have in one's brain over the span of one's life. So I gave him Dr. John Neely's phone number. Dr Neely was my doctor, a pediatric oncologist, at the Hershey Medical Center where I was treated for leukemia 20 years ago. The neuro-oncologist is Dr. Myrna Rosenfeld and I'll see her next Monday the 20th. The radiologist is Dr. Robert Lustig and I'll see him Friday the 24th. I'm pretty sure I want to get a second opinion now, since there seem to be a lot more variables. For instance, the interpretation of the pathology report (or even of the slides), the type and amount of chemotherapy and the influence of the past radiation.
This is not what I was hoping for and I'm very upset by the news. I thought the worst part was over and it sounds like there's a lot more to come. I had three years of chemotherapy 20 years ago and it was hell, I really don't want to repeat that.
Second Opinion/Valentine's Day
I spent most of today chasing papers and trying to find another opinion on my tumor. I've had three enthusiastic referrals to Dr. Henry Friedman at Duke who is known as one of the top brain surgeons in the country. Surprisingly, after calling his office I was told he would call me personally within 24 hours - but I am still waiting.
I was also referred to a surgeon at Sloan-Kettering in New York by Louise who in turn referred me to his neuro-oncologist. Their office asked if I wanted an office visit or a document review, so I opted for the review, which adds to the paper chase, of course.
One hurdle is getting my radiation treatment history from Hershey so they can evaluate whether I can receive more cranial radiation. I'd like to know how important that is to treatment because if I can avoid it without lowering my risk significantly I would really like to. Of all the treatment I received for leukemia, I think I responded worst to radiation. And all your hair falls out.
In other news, it's Valentine's Day and Michelle has some surprise cooked up for me this afternoon. I was a little late on planning, but I managed to get reservations for us tonight at a cute little Italian restaurant in the neighborhood. Of course, everything is colored by the tumor these days, but it also makes the time more precious.
The Neurologist Consultation
On Monday, February 20, we went to the neurologist or neuro-oncologist’s office. My consultation was officially with Dr. Myrna Rosenfeld, but the doctor managing my case is Dr. Matthews and I spent most of the time speaking with her. Both of them were very nice and took lots of time to talk and listen to our questions and give their opinions. They were encouraging of seeking other opinions as well and trying to find clinical trials that may offer new approaches to treatment.
Their reccomendation is six months of Temodar chemotherapy. It’s a pill which I can take at home and the ‘month’ consists of five days of taking pills and 23 days of not taking pills. On the 25th day of the cycle they’ll check my blood, platelets and T-cells specifically because Temodar can make counts dangerously low for some people. It also tends to make people nauseous but that can be managed with more medication.
Temodar is apparently a vast improvement over what was the standard a few years ago, a combination of chemo agents referred to as ‘PCV’. Dr. Rosenfeld told us that ‘PCV’ never really worked because you couldn’t give enough of it to a patient without making them too sick to continue taking it.
Temodar has its problems, however, including the possibility of birth defects. Since Michelle and I have been discussing having a child soon, this is a problem. The neurologist’s recommendation is to wait up to six months after ending treatment before trying to have children. The manufacturer and several other people I spoke with recommended ‘cryopreservation’ of sperm just in case so I did that this morning.
I think I’m likely to get similar recommendations from the other doctors about Temodar, and I think I’m OK with that. I’m more concerned about radiation and want to understand, if I can, the efficacy and the options available. Dr. Rosenfeld was not pushing radiation at all and even suggested I might want to hold off on that because the tumor may return and it would be better to be able to treat it with radiation then than use my alotted radiation in prevention. This one is tricky.
Radiologist Consultation
On Friday, February 24th I met with Dr. John Wilson and Dr. Robert Lustig from Radiation Oncology at HUP. They had not yet received the history of my radiation treatment from Hershey Medical Center, so they couldn't tell me the particular levels of radiation they would like to use for my treatment. Of course, the numbers mean very little to me, so it didn't matter much. They recommend six weeks of treatment, five days per week. They would like to use IMRT, a relatively new technology that directs x-rays more precisely than the old approach of blasting the entire brain. They would target the 'tumor bed', the optic nerve, and 'supporting structures'.
Dr. Judy follow-up
On Tuesday, February 28th I saw Dr. Judy again - he didn't have too much to say, except that I seemed to be healing up just fine. He wants to see me again in three months with another MRI.
Harmony Haven weekend getaway
By the end of February, Michelle and I were getting pretty stir crazy. We wanted to get out of the city and rest a bit. After a few dead ends, I called Tim's father, Harold Mohler, who has a cabin in the hills just outside of Lewistown, PA. He allowed us to stay there for the weekend.
We had a peaceful, quiet weekend for the most part, reading in the living room and watching videos by the wood stove. It was still pretty chilly, but we walked around a bit and Michelle tried out some video experiments.
March
After recovering my driving privileges, reducing (and finally ending) my Decadron doses, and regaining my ability to walk and even run without pain, March ended up being a pretty good month. I went to the gym three times a week and since I was still getting up at 6 every morning, I went to easy morning yoga classes. I still spent a lot of time trying to chase down the second opinions. Basically, I was told that the treatment the team at HUP recommended is the standard treatment for a malignant glioma. Dr. Friedman at the brain tumor center at Duke suggested he could do 'more' but was not forthcoming on what 'more' means. One really great development in March was discovering The Wellness Community of Philadelphia, an organization providing support and programs for people living with cancer. They host lectures and events addressing issues like pain management and integrative medicine as well as weekly tai chi, meditation, and yoga classes all for free and at a beautiful spot in Farimount Park. Michelle and I have joined respective support groups for caregivers and patients and these have been invaluable to each of us in the past couple of months.
A similar organization in DC, Smith Farm Center for Healing and the Arts, offered a day-long 'retreat' called 'Living Well with Cancer' in March. My brother Ben was kind enough to drive down there and attend the workshop with me. The day was really worthwhile, we learned a lot about how people cope with cancer and thrive will living with it. To top off a great day, we got to visit Grace and Nick in Baltimore on the way back.
Louise, who I've mentioned before, invited Michelle and I over one evening to find out more about the 'raw food' diet that she credits with helping her stay alive these past eight years. After a little consideration, we embarked on transforming our kitchen to one in which nothing was cooked over 115°F and all beans, seeds, and nuts were soaked or sprouted before eating. We kept this up for several weeks until the radiation and chemo finally made it too difficult for me to maintain. I've since been told that this diet is quite effective at fighting cancer and I'd like to return to it when I can.
Health Insurance
I seem to have forgotten to mention the minor miracle that occured with respect to health insurance. After following every possible lead I could find in January, I found one insurance agent who told me he could get group insurance coverage for me as a sole proprietor. Since it is group insurance, the premium was low and more importantly existing conditions are covered.
From the time I first talked with him until the card came in the mail, I didn't really believe that it was going to happen, but then again, I had very little to lose by applying. But the card showed up and when I called the company they told me it will work and what's covered.
It went into effect on March 1, so all of my radiation treatments have been completely covered and the prescription chemotherapy Temodar, instead of the several thousand dollars a month I was expecting, is around $80 per month.
So one of my angels is the one insurance agent who, unlike the others I spoke to, found a way to get me covered when no one thought it was possible.
Radiation
rogressively more tired as the weeks wore on, but always had a few good hours each day, at least. I had progressively more difficulty concentrating and more than once had to ask Michelle to not ask me to make a decision on something because it felt like the inside of my head was spinning. On the other hand, I didn't have many of the symptoms the radiologist asked me about weekly - headaches, memory loss, speech problems, etc., so I think I got off pretty easy.
I'll have a follow-up with Dr. Lustig in a month, but since I am now much closer to my lifetime maximum dosage of cranial radiation, I'm pretty sure I won't be getting this sort of treatment again. Although I'll miss Marshall, I won't miss the treatments and besides, I got to keep my mask.
First Follow-up MRI
On 6/6/6, I had my first follow-up MRI since the day after surgery. It looked good to Michelle and I and we soon found out that the doctors agreed. Here's a picture of my newly revitalized (and more compact) brain:
Update and CONTEST!
It's been a long time since I've updated, as these things often go. Basically, things have been going really well - I'm about to start my second month of Temodar and I'm experiencing very little in terms of side effects. I take five days of Temodar pills a month (this month 390mg/day) and I take Zofran for nausea before I take the Temodar, and that's it.
So, Michelle and I are getting married - here in Philadelphia, September 2. She'll be taking full advantage of my new health insurance policy, of course. Right now it looks like another year or so of renting our house in Philly before we can get the finances together to buy a house...
I'm working again, not even half of what I was, but as much as I can right now between fatigue, doctor's appointments, travelling, and all the other delights of life.
And now, I want to start a contest here on my blog. I'm still bald on my radiation spot and have been shaving the rest of my head until it can all grow back. In the meantime, I've been pondering a tattoo on the spot. So here's where you come in.
| Here's my head: | | Here's a tattoo idea for my head: |
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I want help with the 'best' tattoo for my prime real estate. I've taken the darker 'what would make the surgeon laugh?' approach here but you can take it any direction you like. Remember I will still grow my hair back so it may never be seen again. No promises that I'll GET the tattoo, I just want to see some ideas. So download the bare-headed jpeg above, fire up Photoshop, and get to playing!Contests usually have prizes and I haven't thought about that yet. Hmmm... I have all the staples from my head... no, that's no good. I have the mask from radiation, but that's a too personal. I'll come up with something...
Sorry - blog is foobar'd
The blog won't print the rest of my tattoo contest note - I've asked 'Backpack' to fix it, but if they can't or won't in a few days, I'll relocate the blog to somewhere that makes more sense and is better able to deal with syntax errors.