A year and a half?!?

Ok, I think it is a well established fact that I am a horrible blogger. It's been a year and a half since my last post! When I think about it though, there was a good reason for the lack of updates... not much happened in terms of my health in that time :) 


If you read my last post from Nov, 2013, I mentioned that we were thinking about trying a chemo called CCNU. I did, in fact, do 3 rounds of CCNU, between Nov, 2013 and Feb, 2014. After my Feb dose, my tumor had been stable for a while and my doctors thought I should hold off doing more chemo because my blood counts were really low and I was experiencing MAJOR fatigue. We decided to just monitor it with MRI's. Luckily, it remained stable for a year and we didn't see growth on an MRI until Feb, 2015. 


The last few months have been pretty crazy trying to figure out what treatment to do to stop any further growth. It started with my Kaiser oncologist, Dr. Grennan, introducing us to a new member of Kaiser's oncology team, Dr. Lallana, a neuro oncologist, specializing in brain tumors. At our first meeting, Dr. Lallana suggested that surgery on my tumor might be an option now, after we had been told for 13 years that my tumor was inoperable. About a year earlier a neuro surgeon at UCSF had done a computer simulation of surgery on my tumor and he thought that they wouldn't be able to remove enough tumor to offset the risks involved. So naturally we were really skeptical of Dr. Lallana's seemingly rogue, even dangerous suggestion. However, after some urging, he talked us into meeting with Dr. Jian, a neuro surgeon at Kaiser, and thank goodness that we did!

My parents and I found Dr. Jian to be a straight-shooter who had perfectly reasonable answers to all of our questions (and we had a lot of them!). He went into great detail about how he would perform the surgery and it was truly fascinating. 

Prior to meeting with him in March, I had done a functional MRI where I was asked to move my hands and do some cognitive exercises where I would look at a screen and have to think of the word that would finish a sentence or think of as many words as I could that start with a particular letter. It was pretty crazy because they were able to see where in my brain these functions take place to give Dr. Jian an idea of where he could safely cut. My tumor straddles my right frontal and parietal lobes, about even with my right ear, I think roughly 1-2 centimeters from the top of my head and it backs up to the center of my brain. He showed us a purple arc that went around my tumor, out toward my ear, that indicated where my arm function was. He said that given this information, he would go down, between my right and left hemispheres and remove tumor from that direction, cutting from the center of my brain out toward my ear, to avoid the area that controls my arm movement. He would have the anaesthesiologist put me fully under while they prepped me and he opened my cranium (creepy, right?!?), then wake me up to a "twilight" sleep where I'd be really groggy and wouldn't feel any pain in my head, but could talk to them and answer questions. He would use an electrode to stimulate different areas around my tumor and ask if I felt any sensations in my arm or just ask me questions to make sure I could still understand him and talk. This way, he'd able able to "map" out where it was safe to cut before actually cutting. He told us that technically, no tumor is "inoperable", it's just a matter of how much risk you are willing to take. I told him that I would want to be able to walk out of the hospital and in basically the same cognitive state that I entered it. He thought that was a reasonable request and said that he would just close me up if he didn't think he could safely deliver that.

It was nerve-wracking waiting for surgery to be scheduled, but they had to coordinate 2 neuro surgeons, an anaesthesiologist, an operating room and a bunch of nurses for an entire day so it took a couple weeks before we knew my surgery date. In the end, I had surgery on May 7th. It was about 8 hours long and apparently there were 11 people in the OR! I was the first into surgery that day and the last out. My mom said Dr. Jian called them into the "quiet room" after surgery and she was sure he was going to tell them that I didn't make it, but instead he told them he estimated that he had removed 80%-90% of the tumor and that I was in recovery and doing well :) I was discharged on the 10th and, true to his word, I was walking around the hospital just a couple days after surgery! 



Harley, Dena, me and Mom 2 days after surgery

There has always been some controversy about what type of tumor I have. After my original biopsy in 2002, using a Stanford pathologist, Kaiser told me I had an oligodendroglioma (I know, quite a mouthful). This type of tumor tends to be slow-growing and, while it's still a brain tumor, it responds well to chemotherapy and radiation. However, UC San Francisco looked at the pathology as well and thought it was a grade IV glioblastoma, basically the nuclear bomb of brain tumors. Over the years, the doctors have treated me as though it is the more aggressive type of tumor, but, as it turns out, pathology on the tumor that was removed confirmed that it is a grade III oligodendroglioma. This explains why I've responded so well to the treatments I've done and why I am still alive.

Way beyond my wildest expectations, I have regained some of the strength I lost in my left leg 5 years ago!!! I have started doing physical therapy and am still nowhere near walking normally, but I can now walk cautiously without wearing my brace and using my cane. I seem to have a little more weakness in my left arm than before surgery, but that could even diminish as swelling from surgery goes down and I do my physical therapy exercises.

We did have a little scare a couple days after I got home. Mom had a friend over for lunch and my dad had a couple friends over later that afternoon and while they were here, I started feeling weird and confused. It occurred to me that it felt like one of the seizures I have had occasionally over the years, but, having just had brain surgery, I was scared that it might be some sort of complication or a stroke or something worse than a seizure. We went to the emergency room and luckily, they ruled out anything bad and it turns out it was just a seizure, apparently pretty common after brain surgery, but nobody had warned us. I continued having about 1 seizure a day for a few days, but forcing myself to rest more and increasing my seizure medication has taken care of that and I've been seizure free for a couple weeks now :)

I am now rocking a bald head and kind of digging it. I look like an extra in the new Mad Max movie! Plus my showering and primping times are about half of what they used to be :)


Mom shaving my remaining "comb over"

Bye bye hair

 

G.I. Laurie?

Or Franken Laurie?
 

Today we had an appointment with a radiation oncologist, Dr. Nguyen. Prior to surgery, she had said that doing radiation again was possibly a good option to get the remaining tumor that the surgeon was unable to remove. This was exciting news for us because we had always been told that doing radiation again would never be an option. We were told, when I did it in 2002, that I had done as much as my brain could take in my lifetime. However, having a brain tumor, I don't think anyone expected my lifetime to be 13 more years and my doctors now thought any damage done from the initial radiation would have healed so re-irradiating might be possible. Today though, the radiation oncologist said that after getting all of the information from my earlier radiation, apparently I was given a higher dose than she had expected and the chances of side effects are higher than what she originally thought. I had a CT scan today and she is going to try to "map" a radiation plan to see if she can administer more radiation relatively safely.  

Although it feels like it's been a long, slow recovery, it hasn't even been 4 weeks yet and I'm feeling pretty close to my pre-operation energy level. I have to rest and I take naps fairly regularly, but every day my required down time is getting shorter and my stamina is increasing. If I do end up doing more radiation, I can expect that to really zap my energy again, but this surgery and radiation could potentially give me several more years, so I can handle a few weeks of fatigue. My surgeon even said that if it grows significantly again, he could go in and remove more! Every year they've kept me alive is another year that they're coming up with new, innovative ways to treat cancer and I plan on fighting this thing with everything I've got!