Hi Everyone,
Please read this to the end because I started writing it a couple weeks ago and a lot has changed (for the better) since I started writing it...
This is the blog post that I have been dreading writing. I've written similar ones in the past, but, unfortunately, this one seems more final and real than my previous bad news posts :(
My family and I had an appointment on April 9th with my oncologist and it looks like my streak of good luck and good science in trying different drugs and therapies to fight or kill my stupid brain tumor may unfortunately be coming to an end. My dad has been wearing himself out for the past few months looking for clinical trials that I might qualify for but, unfortunately, there aren't any that look promising. Either I don't qualify for them or they are phase 1 trials which are just trying to figure out dosing amounts and toxicity levels, so they'd be shooting me up with as much of the drug that my body could tolerate and that's not exactly how I want to spend my last few weeks or months.
My oncologist said that I probably have a matter of 2-3months. My dad has contacted Hospice to help us prepare for the future, so I am just going to immerse myself in my favorite things until we need their services... Appreciating what an amazing life I've had, my good luck at having been delivered into the best family I could have ever chosen for myself. A family who I can always count on to keep me laughing, usually at myself. My good fortune of having met some of the best people on earth and having the opportunity to call them my friends. As difficult and heart-wrenching as this journey has been, I almost think that everyone should go through a day when they believe their life is on the line. It is very humbling and really puts things into perspective, reminding you that the personal relationships you've formed are the only real things that count in the end. You can't take that fancy car with you, but I believe memories don't just disappear, they will be with you until the end of time. Whether I met you on a plane or a cruise, a few years ago, or 20-30 years ago or I've known you since birth, please know that I do think about all of you and wonder how you're doing and what you're up.
In addition to being grateful for the wonderful life I've had, I'm also thankful that I'm going to be going through this ordeal during baseball season so I can have my Giants distract me from reality. It probably sounds callous to someone who hasn't been a die-hard fan of a sports team, but I know at least a few of you out there know what I'm talking about. There is nothing like a nail-biter to distract you from a crying baby, a hot pan on the stove, or succumbing to a 15-year battle you've been having with a f*%#ing brain tumor that just doesn't know when to call it quits. I'm finally waving the white flag, I surrender, :(
On second thought...Screw that I'm not a quitter!!Ok, so it took me 7 years to graduate from college, but I did eventually get my degree. I believe in miracles. I am living in reality and I know my odds aren't good, but why give up when it really does me no harm to keep up hope??? Science is always evolving, right???
I keep thinking of Magic Johnson, who was considered a walking dead man when he was diagnosed with HIV in the 80's and he's still alive and thriving decades later.
I also keep having this dream of a dark concrete room with a guy sitting against the wall with his legs pulled up to his chest and I'm hoping he symbolizes my cancer in a cell, waiting for its punishment, things not ending so well for it.
In the last couple days, my Dad and I have found a couple reasons for some new optimism!
1) There is a clinical trial at Duke University for brain tumor treatment that shows so much promise that it was featured on 60 Minutes and was recently approved for fast-track status by the FDA! Check out the link below:
www.cbsnews.com/news/60-minutes-breakthrough-status-duke-university-cancer-therapy/
2)Because I was a long time survivor, and hoped that I could inspire recently diagnosed people to not consider it a foregone conclusion that they would be dead shortly and,that there was reason for optimism, a couple years ago,I spoke at a National Brain Tumor Association fundraising walk in San Jose and met a couple guys who were there to walk for one of their dads who had recently been diagnosed with a brain tumor. They were super smart Silicon Valley guys and had connections to some wealthy .com philanthropists. They told me that they were planning on starting a private lab, using already FDA approved drugs to do testing on individual cancer samples, so they could figure out a treatment for your particular tumor, without having to wait for years for a new drug to be developed.
These may be a shot in the dark, but they have definitely given me a renewed feeling of hope and optimism! Much better than waiting for my weekly visits with Hospice!
All my love and I'll try to keep you posted more regularly,
Laurie
Thursday, May 4, 2017
Thursday, October 13, 2016
Finally Some Good News :)
Yesterday I had an MRI and appointment with my oncologist right after to discuss the results. While we were shocked after my previous MRI due to the increase in size of the area where my tumor is, yesterday we were shocked by how much it had shrunk!
If you read my last couple posts, my doctor said the area of growth could have been dead tissue, swelling or active tumor. I started taking a steroid to reduce any swelling and have had four infusions of a chemo drug called Avastin. With the noticeable decrease in size of the affected area, it looks like the drugs are doing their job :) I have one more infusion of Avastin scheduled, then I will have another PET scan to determine how much of the remaining area is active tumor. I'll post again after we get the results of the PET scan.
In the meantime, life goes on. About a week ago, my mom and I were having lunch in Sacramento and she noticed some blood in my eye, like a broken blood vessel. By the time we finished our lunch and got to the car, the blood had spread and covered most of the white part of my eye. We decided that, given my health issues and the fact that I'm on blood thinners, we should go to the ER to have it checked out. The doctor confirmed that it had likely spread so much because of the blood thinners. By that time, it had quit growing and I was told that there is nothing that can be done to help it go away. It is just a matter of time for my body to heal itself and absorb the blood, probably a few weeks. Luckily it doesn't hurt, but for the next few weeks I get to walk around looking like this:
If you read my last couple posts, my doctor said the area of growth could have been dead tissue, swelling or active tumor. I started taking a steroid to reduce any swelling and have had four infusions of a chemo drug called Avastin. With the noticeable decrease in size of the affected area, it looks like the drugs are doing their job :) I have one more infusion of Avastin scheduled, then I will have another PET scan to determine how much of the remaining area is active tumor. I'll post again after we get the results of the PET scan.
In the meantime, life goes on. About a week ago, my mom and I were having lunch in Sacramento and she noticed some blood in my eye, like a broken blood vessel. By the time we finished our lunch and got to the car, the blood had spread and covered most of the white part of my eye. We decided that, given my health issues and the fact that I'm on blood thinners, we should go to the ER to have it checked out. The doctor confirmed that it had likely spread so much because of the blood thinners. By that time, it had quit growing and I was told that there is nothing that can be done to help it go away. It is just a matter of time for my body to heal itself and absorb the blood, probably a few weeks. Luckily it doesn't hurt, but for the next few weeks I get to walk around looking like this:
At least Halloween is right around the corner so I can just say its part of my costume :)
Tuesday, August 30, 2016
Quick update...
Last week I had my first infusion of Avastin, the chemo drug that my doctors hope will help minimize the dead cells left over from radiation and possibly slow or stop the growth of my tumor. The infusion only took about 30 minutes and I have had no side effects. Luckily, I only have to have one infusion every 15 days, for 6-8 weeks, so my schedule is definitely manageable. I think the plan is to have another PET scan and MRI after the 6-8 weeks to see if it is working.
A good friend of mine from high school, Grace, has been asking some of her medical colleagues in NYC if they know of any brain tumor studies and she has gotten me the names of the heads of the brain tumor centers at both Columbia and Cornell! With all of the treatments I've already had, it is unlikely that I will qualify for any "conventional" studies, but one of the doctors said they could review my history and try to think "outside the box". My dilemma at this point is how do I get my VAST amounts of medical records from Kaiser and UCSF to these folks?!? At least now I have a job to do for the next week or two, rather than binge watching Netflix shows :)
That's it for now :) I happily don't expect to have anything exciting to report for a few weeks. I don't want to keep bombarding your inboxes with depressing brain tumor news. I'm going to try to post here more often, so if you're curious about how my treatments are progressing, please check back here. I'll likely just send an email if something big happens. So, in my case, no news is probably good news :)
A good friend of mine from high school, Grace, has been asking some of her medical colleagues in NYC if they know of any brain tumor studies and she has gotten me the names of the heads of the brain tumor centers at both Columbia and Cornell! With all of the treatments I've already had, it is unlikely that I will qualify for any "conventional" studies, but one of the doctors said they could review my history and try to think "outside the box". My dilemma at this point is how do I get my VAST amounts of medical records from Kaiser and UCSF to these folks?!? At least now I have a job to do for the next week or two, rather than binge watching Netflix shows :)
That's it for now :) I happily don't expect to have anything exciting to report for a few weeks. I don't want to keep bombarding your inboxes with depressing brain tumor news. I'm going to try to post here more often, so if you're curious about how my treatments are progressing, please check back here. I'll likely just send an email if something big happens. So, in my case, no news is probably good news :)
Thursday, August 18, 2016
New Treatment Plan for My Latest Tumor Drama
Hi again :)
Well, it's been another year since my last blog post, but that is a good thing because I generally only blog when I get bad news.
First, I'll get you up to speed on what has been going on with me, health wise, in the last year. I did 2 weeks of radiation in the end of July, 2015, as I went into detail about in my last post. Then on November 15th, I fell and broke my left leg! I broke my fibula bone, down near my ankle. It is the smaller of the 2 shin bones. I had 3 different casts, then a couple boots, all lasting until March! And I was in a wheelchair most of the time as I couldn't use crutches because I can't lift my lower leg due to the weakness I already have in that leg. Since my bedroom is in the basement of my parent's house, I had to sleep in the office on the main floor for 4 months. It is all healed though now and good as new :) Needless to say, after having 2 brain surgeries, doing radiation and breaking my leg, I will not remember 2015 as one of my better years, lol.
Throughout this year, I've had pretty significant fatigue, which is expected after surgery and radiation. I sleep a lot and get physically exhausted pretty easily, but I'm learning to limit the number of tasks I plan for myself in a day and to give my brain frequent breaks by taking lots of naps. It is pretty frustrating because I've always taken pride in being independent and now I have to ask for a lot of help from my parents.
In addition, the weakness in my left arm that my radiation doctor warned me about has become a reality. I can barely hold anything in my left hand anymore and I actually sort of forget that my left hand exists! It is very strange and occasionally very funny. I try to take my morning pills with food, so this morning, I wanted to go upstairs with my pills to eat breakfast first. I needed to put my pills in my left pocket as my right pocket was already full, so I put a bunch of pills in my left hand and put my hand in my pocket. Then I started to walk out of the bathroom and realized that my hand was still in my pocket! So I pulled my hand out, started to walk out of the bathroom again, then realized that the pills were still in my hand! Then after breakfast and I was ready to take the pills, I reached my hand into my pocket again and when I pulled my hand out, the pills fell all over the floor. I had already told my mom about my issues getting them in my pocket, so when they went scattering across the carpet we almost cried laughing :)
Mom and I took a fabulous trip to San Diego to watch the Giants play the San Diego Padres this July. Although the Giants lost and we had to pace ourselves due to my fatigue, we still had a great time and the weather couldn't have been nicer. This was the third year that Mom and I have gone to SD when the Giants are playing down there and I think we'll definitely make it an annual event :)
On August 9th, I had a routine MRI. That same day, The docs showed us the MRI images and compared them to an MRI I had in June. It was really disturbing because it looked like my tumor had blown up in just a couple months. The mass where my tumor is was significantly larger, something we had never really seen before. Luckily, although tumor is a malignant, grade III (of IV), my type of tumor is slow growing and when we have seen growth in the past is was always very slight. So this definitely observable change took us by surprise. However, the docs said that the growth could be 3 different things or a combination of them all: 1) tumor growth, 2) necrosis (dead cells) from radiation, (which is what you hope for from radiation) or 3) edema, swelling from surgery and radiation. They needed me to have more tests to help determine what we were dealing with.
My mom was out of town, so my poor dad had to drive in to Sacramento 4 times last week for MRI's and a PET scan and to pick up my mom at the airport. It's about an hour and a half each way. For the PET scan, I had to fast from dinner the night before, then they injected me with a radioactive glucose solution. The idea is that active tumor cells use glucose for energy so it is their food. Since I had been fasting, if they saw a bunch of activity, it would show where starving tumor was now enjoying a glucose buffet. I also had what is called a spectroscopy MRI. I had an IV pumping me with something throughout the MRI, where I usually just have a one time injection. I'm not sure what the difference was, but it was another way to determine what was tumor, necrosis or swelling. I'm sorry I'm going into so much detail, but I find this stuff kind of fascinating and I thought some of you might too :)
I spoke with my oncologist yesterday and he said that the "majority was inactive". There was just a small spot in the middle that showed some activity, whew! I'm already taking a steroid to help minimize any swelling and I am going to start taking an IV chemo drug called Avastin for 6-8 weeks. I've already taken Avastin to treat my tumor a few years ago and I tolerated it really well. It worked for a few weeks but then stopped working and I quit it. Apparently though, Avastin is also used to reduce necrosis and my doc said there is a chance that it could start working again on the active tumor. So hopefully a two birds with one stone scenario. If this doesn't seem to help, he said there is another chemo drug that they can add too, but I'm not familiar with that one.
So, once again, it seems I may have dodged a bullet for a while. I was supposed to move into an apartment in Sacramento tomorrow, but we decided that this isn't a good time for me to try to move out. For now, I've come to peace with the likely fact that I may never be able to live independently again. Though Fiddletown is remote, for those of you who have visited my folk's house, you can understand why I consider myself pretty lucky to have such a beautiful, serene place to retire. My parents have been amazing through all of this and they help keep me positive and laughing, while giving me space when I need it. I know it is a parent's job to help their children, but I don't think mine realized they'd need to help me quite as much as they do and for as long as they have! And they do it all without complaining (at least to me! I have a feeling some of you may have been the recipients of their bitching about me, lol! I'm well aware of the fact that I can be hard to live with.) I am serious when I say that I really lucked out in getting Tom & Debbie Graham as my parents! I love you guys SO much!!!
Well, it's been another year since my last blog post, but that is a good thing because I generally only blog when I get bad news.
First, I'll get you up to speed on what has been going on with me, health wise, in the last year. I did 2 weeks of radiation in the end of July, 2015, as I went into detail about in my last post. Then on November 15th, I fell and broke my left leg! I broke my fibula bone, down near my ankle. It is the smaller of the 2 shin bones. I had 3 different casts, then a couple boots, all lasting until March! And I was in a wheelchair most of the time as I couldn't use crutches because I can't lift my lower leg due to the weakness I already have in that leg. Since my bedroom is in the basement of my parent's house, I had to sleep in the office on the main floor for 4 months. It is all healed though now and good as new :) Needless to say, after having 2 brain surgeries, doing radiation and breaking my leg, I will not remember 2015 as one of my better years, lol.
Throughout this year, I've had pretty significant fatigue, which is expected after surgery and radiation. I sleep a lot and get physically exhausted pretty easily, but I'm learning to limit the number of tasks I plan for myself in a day and to give my brain frequent breaks by taking lots of naps. It is pretty frustrating because I've always taken pride in being independent and now I have to ask for a lot of help from my parents.
In addition, the weakness in my left arm that my radiation doctor warned me about has become a reality. I can barely hold anything in my left hand anymore and I actually sort of forget that my left hand exists! It is very strange and occasionally very funny. I try to take my morning pills with food, so this morning, I wanted to go upstairs with my pills to eat breakfast first. I needed to put my pills in my left pocket as my right pocket was already full, so I put a bunch of pills in my left hand and put my hand in my pocket. Then I started to walk out of the bathroom and realized that my hand was still in my pocket! So I pulled my hand out, started to walk out of the bathroom again, then realized that the pills were still in my hand! Then after breakfast and I was ready to take the pills, I reached my hand into my pocket again and when I pulled my hand out, the pills fell all over the floor. I had already told my mom about my issues getting them in my pocket, so when they went scattering across the carpet we almost cried laughing :)
Mom and I took a fabulous trip to San Diego to watch the Giants play the San Diego Padres this July. Although the Giants lost and we had to pace ourselves due to my fatigue, we still had a great time and the weather couldn't have been nicer. This was the third year that Mom and I have gone to SD when the Giants are playing down there and I think we'll definitely make it an annual event :)
On August 9th, I had a routine MRI. That same day, The docs showed us the MRI images and compared them to an MRI I had in June. It was really disturbing because it looked like my tumor had blown up in just a couple months. The mass where my tumor is was significantly larger, something we had never really seen before. Luckily, although tumor is a malignant, grade III (of IV), my type of tumor is slow growing and when we have seen growth in the past is was always very slight. So this definitely observable change took us by surprise. However, the docs said that the growth could be 3 different things or a combination of them all: 1) tumor growth, 2) necrosis (dead cells) from radiation, (which is what you hope for from radiation) or 3) edema, swelling from surgery and radiation. They needed me to have more tests to help determine what we were dealing with.
My mom was out of town, so my poor dad had to drive in to Sacramento 4 times last week for MRI's and a PET scan and to pick up my mom at the airport. It's about an hour and a half each way. For the PET scan, I had to fast from dinner the night before, then they injected me with a radioactive glucose solution. The idea is that active tumor cells use glucose for energy so it is their food. Since I had been fasting, if they saw a bunch of activity, it would show where starving tumor was now enjoying a glucose buffet. I also had what is called a spectroscopy MRI. I had an IV pumping me with something throughout the MRI, where I usually just have a one time injection. I'm not sure what the difference was, but it was another way to determine what was tumor, necrosis or swelling. I'm sorry I'm going into so much detail, but I find this stuff kind of fascinating and I thought some of you might too :)
I spoke with my oncologist yesterday and he said that the "majority was inactive". There was just a small spot in the middle that showed some activity, whew! I'm already taking a steroid to help minimize any swelling and I am going to start taking an IV chemo drug called Avastin for 6-8 weeks. I've already taken Avastin to treat my tumor a few years ago and I tolerated it really well. It worked for a few weeks but then stopped working and I quit it. Apparently though, Avastin is also used to reduce necrosis and my doc said there is a chance that it could start working again on the active tumor. So hopefully a two birds with one stone scenario. If this doesn't seem to help, he said there is another chemo drug that they can add too, but I'm not familiar with that one.
So, once again, it seems I may have dodged a bullet for a while. I was supposed to move into an apartment in Sacramento tomorrow, but we decided that this isn't a good time for me to try to move out. For now, I've come to peace with the likely fact that I may never be able to live independently again. Though Fiddletown is remote, for those of you who have visited my folk's house, you can understand why I consider myself pretty lucky to have such a beautiful, serene place to retire. My parents have been amazing through all of this and they help keep me positive and laughing, while giving me space when I need it. I know it is a parent's job to help their children, but I don't think mine realized they'd need to help me quite as much as they do and for as long as they have! And they do it all without complaining (at least to me! I have a feeling some of you may have been the recipients of their bitching about me, lol! I'm well aware of the fact that I can be hard to live with.) I am serious when I say that I really lucked out in getting Tom & Debbie Graham as my parents! I love you guys SO much!!!
Monday, August 3, 2015
Radiation, The Sequel
In June/July of 2002, I did 6 weeks of radiation to fight my tumor. I found out recently that I was administered 6,300 rads (not sure exactly what that means) and apparently that is a lot. At the time, and for roughly 12 years after, I was told that I had been given as much radiation as my body could handle for the rest of my life. It would never again be a treatment option for me.
Those doctors did not expect me to live another 13 years. On July 21st, I started 10 days of radiation and tomorrow is my last day. My radiation doctor at Kaiser, Dr Nguyen, is treating me with 3000 rads of a more updated version of radiation that would be the equivalent of 4000 rads of the kind I was given in 2002, so about 2/3 of the dose I first received.
So far, so good :) I'm not feeling much noticeable fatigue yet, but I can expect to in the very near future. Luckily, fatigue & hair loss are the only serious side effects I should expect. Otherwise, I've had a few minor headaches, but nothing a couple Tylenol can't handle.
I'm very lucky that my doctor has agreed to treat me. It is industry standard to not re-radiate, but my doctor warned me of the risks and my family and I agreed that the potential benefits outweigh the possibly serious risks. Dr Nguyen feels confident that she made a plan that will avoid interfering with my vision center & a couple other critical areas that control my breathing and other life-sustaining functions. There is a chance though that I may experience more weakness in my left arm and possibly other unexpected effects.
The reality is, though, that I have a brain tumor. Whether it is radiation that causes it a little sooner, or the tumor itself just growing unchecked, I am going to experience physical and possibly cognitive issues with time. I came to terms with this a long time ago. I would rather be aggressive and hopefully give me a few more years while they're coming up with some really promising new treatments for cancer, than just sitting back and waiting for it to kill me without putting up a fight. I may get some scars in my various battles, but I feel confident that I at least have a shot at eventually winning the war.
The reason that doing radiation right now is so important was explained to me by my neurologist like this...
When the doctors thought I had a glioblastoma, you could think of it like Lake Tahoe: huge (aggressive and fast growing) but with a well-defined border. The tumor that I actually have, an oligodendroglioma, is more like Lake Shasta: shallow (slow growing) but with a bunch of little fingers that go off in all directions (in my brain). Those little fingers are impossible to remove through surgery, so the hope is that radiating the areas surrounding my brain will get a bunch of those fingers.
I think that a lot of people who have been lucky enough to not have had to deal with cancer treatments are often not sure exactly what is meant by chemo and radiation, so here is a quick Cancer Treatment 101:
Chemotherapy: Cancer treatment using chemicals, usually administered through an IV or orally by pills. Because it gets into your bloodstream, it goes throughout your body. However, different types of chemo are more or less effective at getting to and treating different parts of the body. The types of chemo that cause hair loss and nausea do so because they are made to attack rapidly dividing cells, such as hair cells (hair loss), those that line your digestive tract (nausea) and cancer cells. Luckily, most of the chemo I've done was oral and I had very few side effects. I didn't lose my hair from it and I could tolerate any sickness by taking an anti nausea medication. Unfortunately, in treating brain tumors, there is what is known as the "blood/brain barrier" which is a defense system in our bodies to help protect the brain. However, it also makes chemotherapy administered through the blood, largely ineffective on brain tumors. I just happened to get a type of tumor that responds to chemo better than many types. In a way, I guess you could make an argument that I've been fortunate.
Radiation: You can think of radiation more like an Xray. You can't see it or feel it, but it is somehow attacking cancer cells, but also healthy normal cells that are in its path. I picture it like a laser beam out of a comic book, frying my tumor and leaving behind an empty crater where it used to be :) Radiation oncologists have to make a plan to radiate as much of the tumor as possible while avoiding other critical, healthy areas. To make sure that only the exact area that Dr. Nguyen determined is safe to receive radiation for each of my 10 treatments, it is critical that my head is in exactly the same position each time. My wonderful technicians ensured this by creating a mask that attaches to the table I'm laying on. Prior to treatment, they took a plastic mesh material that becomes pliable when wet and stretched it down over my face, forming it to my nose, chin and eye sockets, then waited for it to dry and harden again. Thank goodness I'm not claustrophobic or I'd have some serious issues!Check out these pictures of my medieval torture device...
They use lasers to line up targets on the mask to make sure that everything is in place every time. The whole process only takes about 10 minutes, from walking in the room to walking out, and I just close my eyes and hear that machine in the background moving around my head as well as whatever music they're playing that day. My first day it was a Christmas song, then a few days of elevator music, then Friday it was 80's soft rock :) I have to give a shout out to my techs because they are so awesome and keep me smiling and laughing! I'm definitely going to miss seeing them every day!
Tuesday, July 14, 2015
Not Again!!!
So exactly 1 month ago, I experienced just about the scariest event of my life. On Friday, June 12th, my parents and I were on a road trip to Santa Barbara to see my nephew, Mason, graduate from UCSB. I wasn't feeling well, dizzy and really tired, and attributed it to my brain surgery just 5 weeks earlier.
We got to Solvang, a town we were staying in about 30 minutes from Santa Barbara, and I was just getting worse. I was really dizzy and my parents had to help me up to our hotel room. I just took it easy that night and went to sleep early. Saturday I got up for a while to try to be social because my whole family was there for the graduation, but I ended up sleeping most of the day. Mind you, I had been sleeping a lot after my surgery, so this wasn't too odd given the previous few weeks. However, Saturday night, things started to get really scary. I couldn't even stand up on my own and my speech was slurred. I think I slept a little that night, but by early Sunday morning, I could barely speak and I couldn't stand up at all and we finally called 911. I was taken to a hospital in Santa Barbara, they did a CT scan of my brain and realized that I had a subdural hematoma, or brain bleed, and needed emergency surgery to relieve the pressure of all the extra blood pressing on my brain.
My recovery from this second surgery has been a lot harder than my previous one. I had headaches and nearly daily seizures for the first couple weeks. Any gains I had made in terms of walking have pretty much been erased, though I'm not giving up, doing my exercises in the hope that I'll get some strength back in my leg. My left arm is significantly weaker than it was and I think the connection between my brain and my left arm has been further disrupted because I have to sort of remind myself that my hand is there. I keep burning myself on pans and regularly drop things because I simply forget that my hand exists. It's a very strange phenomenon! I know it sounds horrible, but it's actually kind of funny and we joke about it. I'm also doing physical therapy to try to restore some connections between my brain and arm.
The really strange part of it all is that my brain bleed was basically unrelated to my previous brain surgery! I have been taking blood thinners for years and I had to stop taking them before my first surgery. When I resumed taking them, 2 weeks prior to our trip to Santa Barbara, I was told to take the same dose I was taking prior to surgery. Well, it turns out that dose was way too high. With blood thinners, you need to have your blood monitored regularly because all kinds of things really affect your ability to form clots including diet, alcohol and changes in medication. I don't drink anymore, mostly because of my blood thinners, but my diet after surgery was very different from prior to it and my medications had changed significantly. With the level that my blood was at, I could have had the brain bleed anytime, anywhere, regardless of my prior surgery.
So yeah, I had 2 brain surgeries within 5 weeks. I was pretty bummed after the second one because I thought I'd never feel like myself again or be able to drive again or really have any independence. However, things have really turned around in the last week or so. My stamina is getting much closer to normal and I'm not sleeping nearly as much (hence, why I'm writing this post at 3:00am). I've had a few outings to Sacramento and Jackson and think I might be ready to start driving again soon :) Life feels like its getting back to normal and I may be able to start thinking about moving out again within a few months. Only time will tell, but I'm feeling optimistic!
We got to Solvang, a town we were staying in about 30 minutes from Santa Barbara, and I was just getting worse. I was really dizzy and my parents had to help me up to our hotel room. I just took it easy that night and went to sleep early. Saturday I got up for a while to try to be social because my whole family was there for the graduation, but I ended up sleeping most of the day. Mind you, I had been sleeping a lot after my surgery, so this wasn't too odd given the previous few weeks. However, Saturday night, things started to get really scary. I couldn't even stand up on my own and my speech was slurred. I think I slept a little that night, but by early Sunday morning, I could barely speak and I couldn't stand up at all and we finally called 911. I was taken to a hospital in Santa Barbara, they did a CT scan of my brain and realized that I had a subdural hematoma, or brain bleed, and needed emergency surgery to relieve the pressure of all the extra blood pressing on my brain.
My recovery from this second surgery has been a lot harder than my previous one. I had headaches and nearly daily seizures for the first couple weeks. Any gains I had made in terms of walking have pretty much been erased, though I'm not giving up, doing my exercises in the hope that I'll get some strength back in my leg. My left arm is significantly weaker than it was and I think the connection between my brain and my left arm has been further disrupted because I have to sort of remind myself that my hand is there. I keep burning myself on pans and regularly drop things because I simply forget that my hand exists. It's a very strange phenomenon! I know it sounds horrible, but it's actually kind of funny and we joke about it. I'm also doing physical therapy to try to restore some connections between my brain and arm.
The really strange part of it all is that my brain bleed was basically unrelated to my previous brain surgery! I have been taking blood thinners for years and I had to stop taking them before my first surgery. When I resumed taking them, 2 weeks prior to our trip to Santa Barbara, I was told to take the same dose I was taking prior to surgery. Well, it turns out that dose was way too high. With blood thinners, you need to have your blood monitored regularly because all kinds of things really affect your ability to form clots including diet, alcohol and changes in medication. I don't drink anymore, mostly because of my blood thinners, but my diet after surgery was very different from prior to it and my medications had changed significantly. With the level that my blood was at, I could have had the brain bleed anytime, anywhere, regardless of my prior surgery.
So yeah, I had 2 brain surgeries within 5 weeks. I was pretty bummed after the second one because I thought I'd never feel like myself again or be able to drive again or really have any independence. However, things have really turned around in the last week or so. My stamina is getting much closer to normal and I'm not sleeping nearly as much (hence, why I'm writing this post at 3:00am). I've had a few outings to Sacramento and Jackson and think I might be ready to start driving again soon :) Life feels like its getting back to normal and I may be able to start thinking about moving out again within a few months. Only time will tell, but I'm feeling optimistic!
Wednesday, June 3, 2015
A year and a half?!?
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!
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| 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 :)
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| Mom shaving my remaining "comb over" |
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| Bye bye hair |
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| G.I. Laurie? |
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| Or Franken Laurie? |
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!
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