Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them slip from your heart as long as you live. Teach them to your children and to their children after them.
Deuteronomy 4:9

Karen and I were extremely happy with ourselves Thursday afternoon. We worked very hard to get to our 3:00PM appointment with the radiation oncologist on time. In fact we got to the appointment early! This was quite a feat considering that on the way there we had to drop Hannah off at ballet, deliver paperwork to one of my customers, drop my Mom off at her house, and then brave the traffic into San Francisco.

We were quickly humbled in our short lived triumph, however, when the gentleman who checked us in informed us that we were actually late to our appointment. By 2 hours! Our appointment was apparently at 1:00PM … oops ... my bad. Fortunately they were willing and able to see us.

As anyone who has gone to a doctor’s office will be intimately aware, even the most efficient and well oiled doctors offices still make you wait for inordinately long periods for the doctor to arrive. Maybe making us wait for their imminent arrival is a scheme developed generations ago by some of the first physicians to generate a sense of suspense and to make the doctor feel important. Or, maybe they’re all just bad at staying on schedule. Or, maybe there’s a lot of inconsiderate patients who arrive two hours late to their appointments and throw the doctor’s immaculately conceived schedules off for the whole day. In any case, we knew that at least in this one case we deserved the long wait and so we passed the time dutifully and without one word of complaint until the doctor arrived.

Actually, because UCSF is a teaching hospital it is usually the lowly neophyte med student who sees you first. They ask preliminary questions and do standard neurological tests the result of which will then be delivered by the student to the doctor in an academic version of the “telephone game”. It’s during this preliminary examination that the med students practice their textbook bed side manner that always seems a bit awkward when applied in real life. I must say I wonder sometimes if the sympathetic nods, grunts and other gesticulations that these med students make are truly genuine and if the almost eager interest in our case stems from a deep seeded concern for our well being or from an eagerness to finally be working on a real person. In spite of my natural suspicion I do believe that our med student that day was one of the genuine ones and so I was entertained as I always am as he went through his regimen of neurological tests that they use to asses general gross motor function.

The reason I always get a kick out of watching these tests performed on Karen is because she is in a word, competetive. I hold my breath in anticipation just waiting for the look of surprise and maybe even stifled fear each time a new doctor performs this test for the first time and says “push against my hand as hard as you can with your leg.” As soon as that simple command is issued the doctor and his chair (regardless of size, weight, or position) are promptly catepulted a foot or so back from his or her starting position. It is also immediately followed by a subtle look of satisfaction on Karen’s face.

After the med student was done with his tests and questions he left the room to consult with the doctor who eventually came to talk to us. I must say that I really liked her. She was very clear and descriptive about what Karen should expect from the radiation. In fact, she was extremely generous with her time considering that we arrived at 3:00 and she is usually gone by then. When all was said and done she stayed with us until 6:00PM.

She even scavenged the halls for a laptop on which to show us on the MRI scans where the tumor is located on Karen’s spine. If you look at the picture below you can see the yellow arrow pointing to the spinal cord (a black cord running up and down the MRI). The green arrow is pointing to the white cerebral/spinal fluid just to the right of the spinal cord. This bright area should run up and down the whole spinal cord and should appear to be consistently white. As you can see in the scan, however, there is a significant presence of a grey discoloration (I have two red arrows pointing to some of the grey areas to give you some perspective. The grey areas are the cancer and as such should not be there. Given the significant presence of cancer, you can now see why the doctors agree that it is really important that they radiate this stuff right away.

The good news continues to be that ependymomas typically respond very well to radiation. According to the radiation oncologist treatment is considered successful when the tumor stops growing. Their expectation is that radiation will probably prevent Karen’s tumor from growing anymore and may even shrink what is already there. This, as always, is not a guarantee or a certainty, but it is what they expect to see given how ependymomas typically respond.

The doctors want the radiation to begin no later than two weeks from this past Thursday. Once it begins the sessions will go for six weeks, Monday through Friday, and will last between 15 and 20 minutes. This will be a more aggressive radiation than what they originally intended because the ependymoma has demonstrated that it is more aggressive than initially believed. The first 2/3 of each session will be a mild dose of radiation spread consistently over the whole brain and spine. The last 1/3 of each session will be a more powerful dose focused on the areas of Karen’s brain and spine where there is significant tumor presence.

The potential side effects that Karen may experience during treatment are:

Fatigue. This will progressively increase through the end of the therapy. It should not be to the point of incapacitation, and she can be as active as her body will allow her, but the doctor did say that help around the house will be important.

Hair loss. The radiation oncolgist assures us that she WILL lose all of her hair. This is because her whole head will now be irradiated. It will start to grow back about two months after radiation is over.

Decreased blood count. A decrease in red blood cells, white blood cells or possibly platelettes could occur. If this does occur it will not be to the point of immuno-suppression, but because a decrease is a serious possibility her blood will be monitored weekly to make sure that her counts don’t dip to low.

Skin dryness. Her skin will not be burned and there will be no pain involved, but her skin may become dry. This can be addressed by a simple skin lotion.

Nausea. Because her spine will be getting radiation some of that radiation will go through her stomach which could cause nausea. In order to prevent the discomforts of nausea the doctor will provide anti-nausea medicine from the start to avoid any potential discomfort.

The potential long term radiation side effects are:

Short term memory difficulties. This would manifest itself years down the road. Examples of this could be not remembering all the numbers in a new phone number, or needing to write down a grocery list rather than committing it to memory.

Hormonal regulation problems. This would be caused by potential damage to the pituitary gland which regulates hormones like estrogen, and cortosal. There is about a 40% chance that sometime in the future (between 2 and 40 years from now) her pituitary gland could have trouble producing hormones in the proper amounts. This could be easily treated if it becomes an issue and with yearly level checks they should be able to monitor the levels and respond accordingly.

Fertility problems. Because of potential long term damage to the pituitary gland the hormones that control fertility could be impacted. This could make it difficult to conceive if the needed hormones are not provided in sufficient amounts.

Vision, motor function, balance and language should all be unaffected by the radiation.