You might wantto sit down for this one

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

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:

At least Halloween is right around the corner so I can just say its part of my costume :)

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 :) 

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!!!

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!

 

 

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! 

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!

New Treatment Plan :)

Hi Everyone!

We've had a bunch of up and downs over the last couple weeks regarding my treatment so I want to give you all an update on what's been going on. Here's a little summary...

 

On Oct 23rd, we met with the neuro surgeon at UCSF and he seemed to think that the trial in which I would have surgery with a virus being directly injected into my tumor was a good option for me. We planned for me to go to UCSF today to sign all of the consent forms and surgery was going to be scheduled for this Thursday, Nov 14th. However, last Friday, Nov 8th, I received an email from my neuro oncologist, Dr. Prados, saying that the surgeon and his team did a simulation of the surgery using my last MRI and a computer program that allows them to practice the surgery before they actually do any cutting, and they realized that they would not be able to infect my tumor with enough of the virus to make the procedure very effective. Apparently, due to the size, shape and location of my tumor, the risks/rewards were just not in my favor.

 

This news was really disappointing because we had really struggled to make the decision to go forward with the surgery and now it wasn't an option. My mom and I went back to UCSF today to discuss our other options again with Dr. Prados and we've come up with a new plan of attack that we feel very comfortable with. If you read my blog and remember Option 3, the nano particle treatment, Dr. Prados talked to us some more about that trial and it seems like that treatment plan isn't ideal either. He said that the results from the trial haven't been very impressive and he seemed very reluctant to go that route.

 

We've decided to start out trying an FDA approved chemo called CCNU. I did this chemo when I was first diagnosed and, if I remember correctly, it had some good results for a short while. It has very few side effects, mostly just fatigue and lowered blood counts, so I should tolerate it very well. It is administered in a single dose every 6 weeks for 6-8 weeks with MRI's before each new round to make sure it is still working. After those 6-8 weeks or if an MRI shows my tumor growing, I will do radiation in combination with a chemo drug called Avastin. In 2002, I did 6 weeks of radiation and was told I would never be able to do radiation again, that I had done all that my body could handle. Apparently they didn't expect me to live another 11 years and they now think I can handle another 2 weeks of it :) The last time I did radiation, my tumor did not grow again for 3-4 years, so this definitely gives us some optomism. Another good thing about this decision is that I can do all of this at our Kaiser in Sacramento and won't have to make the 3 1/2 hour trek to SF for treatment. We're a little sad though because we've gotten to know Dr. Prados and all of the nurses at UCSF pretty well over the years and now we won't get to see them regularly. However, if all of the above fails to work, I've got my awesome team there ready to come up with a new game plan :)

 

Big hugs, health and happiness to you all!

Laurie

 

 

 

Ok, we've got a surgery date... hopefully...

Man, this waiting is killing me!  I don't feel like I can make plans more than a couple days in advance because I don't know what the next few weeks hold for me.  However, my waiting may be over :)

I received a call from my oncologist at UCSF tonight saying that they are trying to schedule my surgery for next Thursday, 11/14!  A bunch of stuff has to happen before then though, so it's not set in stone just yet.  Tomorrow, I have to get a ton of labs done at Kaiser in Sacramento as part of the trial.  Then next Tuesday, 11/12, the human experimentation committee will meet in the morning to hopefully approve the next amendment in the trial.  If that happens, then I have to go to UCSF that afternoon to sign consent forms, all kinds of paperwork has to go back and forth between UCSF and Tocagen, the company sponsoring the trial, and if all goes well, I will have surgery on Thursday, yikes!

In a way it's a relief to have a date set, but it's still brain surgery, so I wouldn't say I'm exactly relieved.  When I had my original biopsy in 2002, I had to fill out an advance healthcare directive specifying exactly what extreme measures I want taken in case all doesn't go well with the surgery and who I want to make decisions for me.  I have to update that and create a will before surgery, so I'm thinking this isn't going to be a very fun weekend.  Luckily (I think???), I've had a lot of time to think about these things, now it's just a matter of finally doing it.  I suppose it's something everybody should do, but nobody wants to, kinda like a colonoscopy :)

Anyway, that's the news for now.  I'll blog again if I hear anything else and will try to check in at least one more time to let you all know if the surgery is a go. 

All my nervously excited love!!!
Laurie             

No surgery date yet...

Happy Halloween!!!

After making another 3 1/2 hour drive to San Francisco this past Monday, we weren't able to get anything finalized but we found out a little more about the trial I'm going to do.  This is a phase 1 trial which means that right now, they are trying to find out the appropriate dose to give patients and the best way to administer it.  At the beginning of the trial, they start out with a low dose & increase as they monitor any side-effects.  Luckily for me, they are very close to the end of phase 1, meaning that I will be getting the highest amount of virus, given over the longest time rather than a small dose that might not have any effect on my tumor.  Right now they are just adjusting the amount of steroid to be given with the virus. 

Each time they make a change to the protocol, i.e, a dosing change or change to how they administer it, they call it a new amendment and have to get it approved by some board who oversees human trials to make sure they are following ethical practices.  They just finished the 14th amendment and will be starting the 15th soon which I will be on.  We do not know my surgery date yet, but it will be sometime after November 10th, probably either that week or the next. 

In the meantime, I'm just going about life as usual :)  Going to a pub for a Halloween Trivia night tonight!

You all have fun taking the kiddos out for trick-or-treating and getting into whatever trouble you big kids might find yourselves in!!!

Decisions, Decisions...

OMG! It has been such a long, emotional and frustrating week!  However, I have finally made a decision about which treatment to do, so I am feeling somewhat more peaceful now.  Here's how my week went and how I came to this agonizing decision...

On Wednesday, 10/23, my folks and I made the trek back to UCSF to meet with a neurosurgeon who works with my neuro-oncologist there.  He told us more about the Tocagen trial and surgery involved in which he would inject a virus directly into my tumor.  I would wait a few weeks for the virus to, hopefully, fully infect the tumor, then take a harmless anti-fungal drug that becomes chemotherapy when it comes in contact with the virus. 

The surgery will be done while I am in an MRI machine so they can see, real time, where the drug is being injected.  Apparently, when this trial began, they injected the virus in just one quick dose but found that it didn't infect the tumors very well.  They have now started infusing the tumors over a longer period to try to ensure better penetration.  If I have the surgery, they will infuse my tumor over 3 hours while checking on me every 10 minutes to make sure as much of my tumor is infected as possible.  A major risk in having the surgery is developing more weakness on my left side due to swelling and the location of my tumor.  However, the surgeon seems to think that, using steroids, the swelling can be kept to a minimum and any more weakness that I develop from the surgery may hopefully inprove over time as the area heals.  They want 30 patients in the trial, 15 at UCSF and the other 15 at other institutions across the country.  UCSF only has 1 more slot.

I had a long phone conversation with my oncologist Thursday night, trying to get some guidance from him to help make my decision.  I had him on speaker so my parents could hear what he had to say and ask questions as well.  We basically reviewed the options and he helped us look at the risks and benefits of each.  He said that if I did another treatment and it didn't work and my tumor grew, the surgery option would likely be off the table.  After getting off the phone, my folks and I nervously said which direction each of us were leaning and, luckily, we all had the same inclination... I'm going to do the surgery.

Given the time restraint and the fact that UCSF can only take 1 more patient on the trial was what pushed us over the edge.  However, we were all thinking that this trial, while risky, seems very innovative and possibly ground breaking.  Given the several different types of treatments I've done already and the fact that eventually they all stop working, unfortunately I live in reality and have had no hope that I will ever be cured.  I've had amazing success thus far, way more than any of my doctors ever imagined, but seriously, I have brain cancer and eventually my lucky streak will come to an end.  With this trial though, there is a slim chance that my tumor could actually shrink a little.  So, while I am scared about the surgery, I'm also allowing myself to feel hopeful and even a little optomistic :)  When I was diagnosed in 2002, this trial didn't exist.  Every year that I survive is another year closer to finding a cure.

Another factor leading us to surgery is the fact that I can do any of the other treatments if it doesn't work.  Hopefully it will and we won't need to make another difficult decision any time soon, but it sure is nice to have a 2nd, 3rd and 4th option!

I have an appointment on Monday 10/28 with my oncologist to sign paperwork and start talking about scheduling the surgery.  I have to wait 3-4 weeks for my previous trial drug to leave my system and it has only been 2 weeks since my last dose so I'm thinking it will probably be the first week of November.  I'll let you all know when it will be.

Ugh, heavy stuff, huh?!?  I've been on an emotional roller coaster all week, but have felt a huge weight lifted since making this decision.  Now back to normal life for a while... catching up on all my shows, trying to exercise and lose weight, crocheting like a mad woman... all my usual boring stuff :) 

I'll let you all know what I find out in my appointment on Monday. 

Big bear hugs!
Laurie

All Good Things Can't Last

Well, unfortunately my run of unbelievable luck on the clinical trial at UCSF that I've been on for THREE years has run out :(  I knew this day would come eventually, but it's still a bummer getting the news.  Comparing the MRI that I had a couple weeks ago to one's in June and August, there is a small spot on my tumor that clearly shows slight growth.  This was enough for my doctor at UCSF to determine that the experimental drug that I was on is no longer keeping my tumor stable which was enough for him to take me off of the trial.  I still consider myself extremely lucky though, because I believe that I was the last person on the trial for nearly 2 years!  For some reason, my tumor was more receptive to the medication than any others.

So now, once again, we are in the uncomfortable situation of choosing a new path of treatment.  Fortunately, my doctor and his team have offered us at least 4 options and I think my family and I are close to deciding on one.  Here are my layman's descriptions of our options:

1)  Try some of the chemo drugs that I've already done in the past to see if they start working again since I haven't done them for so long.

2)  Do 1-2 weeks of radiation, along with a chemo drug that I had in the past.  This is an option that, 11 years ago when I first did radiation, I was told I would never be able to do again.  I was told that they had given me all the radiation that my body could tolerate.  Apparently they didn't expect me to live another decade and UCSF's radiation oncologist thinks that it has been long enough an interval now that I could do a little more.  Last time I did radiation, I basically went into "remission" for several years :)

3)  A UCSF clinical trial using nano-particles.  This is a trial that I was approved for back when I was approved for the trial I just finished, so it has been ongoing for at 3 years which gives me a fair amount of confidnce in it.  With this one, I would receive the trial chemotherapy by IV infusion at UCSF and spend 3 days in the hospital, I think for observation.  Then I would return to UCSF for the treatment every 3 weeks, but would only need the hospital stay for my first infusion.  The way I understand it, this drug is designed to find my tumor, then sort of "explode" a super dose of chemo into the tumor, hopefully having a bigger effect than standard chemotherapy. 

4)  A clinical trial sponsored by a company called Tocagen.  In this trial, I would have surgery to inject a virus into my tumor, then wait 3-4 weeks for the virus to invade all of the tumor.  I would then take an oral anti-fungal drug, already FDA approved and harmless to the rest of my body.  However, when the drug meets the virus that has infected my tumor, it turns into a chemotherapy drug attacking only the tumor cells.  This trial is really exciting, but there is some definite risk with the surgery due to the location of my tumor.  Too much swelling could cause me to lose more motor function on the left side of my body.  I have an appointment on Wednesday, 10/23 with UCSF's neurosurgeon to discuss the risks.  Check out the following link to see more about the trial: http://www.tocagen.com/.

Right now, I'm leaning toward doing #3.  Since it is a trial, nobody knows if it will be around in a year or two & since it's been going on for a few years, it must be showing some signs of hope.  I still need to find out more about it though before I make a final decision like how many people are on the trial, what phase the trial is in and how effective it has been for those who have participated in it.  It seems like a minimally invasive option that my doctor appears to favor. 

Since #4 involves a touchy surgery, I'm a little less inclined to start with that one.  Maybe keep it in our back pocket in case #3 doesn't work.  It seems a little counter-intuitive that I wouldn't start with  #1 and #2 because they are already FDA approved, but I can do those at any time.  I'd rather start with something experimental and more advanced, that hasn't been around for decades and that could prove to be the magic bullet.

With the input of my doctors, family and friends, I will likely be making a decision by next week and starting treatment soon thereafter.  I'll let you all know which way we're going and when treatment will start :)

As always, thank you to all of my family, friends, doctors, nurses and strangers who have shown their concern, compassion and unending support for me through this crazy ride!  I truly love you all and you guys are the reason I keep going with a smile on :)

XOXO,
Laurie ;-)

The Portland Brain Tumor Walk is Coming Up :)

Hi everyone!  I just wanted to let anyone who is interested know that the National Brain Tumor Society is having a walk for brain tumor research and support on August 18th in Portland.  My Uncle Jimmy put together a team for the walk last year and we had an absolute blast!  The sun was shining (I know, incredible, huh???) and the views along the Willamette River were gorgeous.  My aunt and uncle hosted an after-walk BBQ at their horse rescue where kids (and big kids) got to go on horse rides and find out all about the great work that their rescue does for rehabbing neglected horses.  It was a fun, family-friendly day and I'd like to invite anyone who is interested in joining our team to check out the links below to my personal page and our team page.  If you'd like to join the team and walk with us, you can sign up on the team page, or if you're not able to walk with us, you can make a donation on my page. 

Laurie's Page: http://www.braintumorcommunity.org/site/TR/Events/BTW-OR?px=2874742&pg=personal&fr_id=1840

"Walking for Laurie" Team Page: http://www.braintumorcommunity.org/site/TR/Events/BTW-OR?pg=team&fr_id=1840&team_id=51961

Other than planning for the walk, there's not too much else going on these days.  I'm still on the same trial at UCSF and still doing well :)  I think I'm on my 20th round and will find out the results of my next MRI on July 16th.  I'm not having any new symptoms, so I'm hoping that the MRI will show that my tumor is still stable.  Fingers crossed!

I have another exciting trip to look forward to after going to Portland!  Mom and I recently booked a 2 week river cruise going from Amsterdam, along the Rhine River through Germany, and ending in Basel Switzerland!!!  I've always dreamed of seeing the world but, in recent years, have thought that I'd never get to live my dream.  This will be my first time to Europe and to any country other than Canada or Mexico.  We're going in November, so it will be kinda chilly, and I hear that river cruises are mostly older folks, but we plan on seeing some awesome sights, eating amazing food and having the time of our lives :)  Plus, it'll give me a good chance to channel my inner old lady by crocheting on the boat deck while watching the scenery go by!

On the topic of crocheting, I've been hard at work building my inventory of baby and kids hats to start selling them.  I'm working on a website and had some business cards made and am planning on trying to get them into some local kids clothing stores and consignment shops.  When I get my website finished, I'll post a link to it on here and on Facebook.

My love to you all!!!  Hope you had a great 4th of July!      

Dr. Prados' Decision

Sorry I didn't write a post yesterday, but I didn't get a call from my Dr. Prados until about 5:30pm and we had some guests over, so I didn't get a chance to post.

Anyway, of course I wasn't able to get to my phone in time to answer it, so he just left a message. He said that most of his colleagues agreed that it wasn't evident enough that the tumor had grown and that they think I should continue on the same treatment I have been doing. That is good news for me since I already know that I have no side effects from this chemo and I know what to expect. There's always a little anxiety when I start a new treatment just for fear of the unknown. On his message, he said that at my next appointment, he really wants to check out my left leg's strength to see if it seems to continue to get weaker, a sign of tumor growth. I tried to call him back to ask a few questions, but wasn't able to reach him. I spoke with one of his nurses who said they would want me to get another MRI in 8 weeks. Apparently their offices are closed today and over the weekend, so I won't get to talk to him until Monday. So, at least for the next few weeks, not much new will be happening unless I lose a noticable amount of strength in my leg.

Like I promised, here it is...

The date is the day I was diagnosed with my tumor and the slash marks are for every year that I've beat the odds since. In case it's hard to tell, it's on the outside of my right calf. It's a little bigger than I was originally expecting, but I figure go big or go home :) I think I'll eventually get some flowers or something intertwined. I know I'm going to be addicted now! Now each year on January 8th, I'll go get another slash mark until they wrap around my calf, go down my ankle and cover my foot. I figure at least 50 more years :)

New News

Boy, I'm really bad at this! Honestly though, I haven't posted anything because there hasn't really been much to write about lately. I've been on the same trial drug for roughly the last 15 months with very little to tell other than the fact that (luckily), my tumor has responded well to the medication and has remained stable. Apparently, I am the last person still in this trial, as everyone else has had to be taken off of the drug because, either their tumors had grown or their immune system became too compromised. However, I received news today that perhaps my luck on this drug has worn out as well.

I had an appointment today with my doctor at UCSF to discuss the results of my latest MRI from March 20th. In comparing it to my last one from January, and another from last May, it appears as though the main mass as "collapsed on itself" somewhat, according to my doctor, making it smaller (good news), but that there is a new "tail" portion, starting to grow towards the back of my head, more into my motor strip, making him "concerned" that the trial drug I'm on is not working anymore, at least on that new tumor area. When he checked my strength and reflexes, like he does at every visit, it seemed as though my left leg has lost a bit more strength, contributing to his concern that my left side motor function is being compromised. As a result, he suggested four options for us to consider going forward:

1) Continue on the drug that I've been on for one more round and have another MRI in 4 weeks, as opposed to 8 weeks, as I've been doing since I started on it. This would likely confirm if the "tail" is growing or not and we could make a decision after that. The problem with this scenario is that to start any new trial or protocol, I have to be off of this medication for at least four weeks, so that would mean 3 weeks on the drug, an MRI, then 4 more weeks off the drug before I could start a new treatment, so nearly 2 months with very questionable benefit.

2) Start on another trial that I have already been approved for. I think I wrote about this one before. It is some kind of "nano" drug that would be given intraveinously every 3 weeks. He described it as a super concentrated amount of a drug that is already approved, that would just go right to my tumor and hopefully kick the crap out of it. So far it has been in a phase I trial, meaning that they are trying to figure out maximum dosage, which he says they are just about at, then it will go into phase II where they study more about how effective the drug is. It sounds like I would be coming in at the phase II stage, so I would be slightly less of a guinea pig. He sounds pretty excited about this drug though and its potential.

3) Start on another trial where I would have surgery and they would implant a virus directly into my tumor, then treat me with an already approved chemo drug that is known to attack this type of virus. Apparently this virus will only attack cancer cells, and this drug is known to work on this type of virus and whatever it is attacking. My doctor sounded fairly excited about this option because it is such a targeted approach. The main problem, again, is that my tumor is so close to my motor cortex, that more weakness or paralysis is a possibility from the surgery. He said that he needs to discuss it with their neuro-surgeon and make sure that Kaiser would OK the procedure.

4) I had previously been told that it would be dangerous for me to do any more radiation, but apparently over the last 10 years things have changed. He said that I could try doing more radiation in combination with a chemo drug I did in the past, Avastin, which worked for me for a while, but then stopped working and my tumor grew again. He said that using Avastin with radiation has shown much better results than Avastin alone.

He meets on Thursdays with his colleagues to discuss individual cases, so he said that he will call me on Thursday so we can hopefully decide what direction to go in. I'm taking this as some kinda bad news, but bad news that I knew was coming eventually. This doctor, Dr. Prados, is so amazing. He is direct, no beating around the bush, but also encouraging and innovative and I know he will never give up on me. I always leave his office with a sense of optimism and today was no different. I know he will be honest with me if there ever comes a point when we don't have much to be optomistic about, but he certainly has not given me that feeling at all. I just feel like this is yet another hill to climb on this damn cancer roller coaster and I'm sorry that you all have had to hang with me on it for the last decade, but just know that I appreciate all of your support! In recognition of the last 10 years since I was diagnosed, I'm finally going to get my first tattoo on Wednesday... it will be the date I was diagnosed, January 8, 2002, then 10 slash marks (you know, 4 lines, with a 5th line thru them), to mark each year since. Then every year from now on I'll commemorate that day by getting another slash. I plan on leaving enough room for 50 or 60 slash marks :) I know its kinda morbid, but I think of it as a celebration since that was pretty much the worst day of my life and I've had so many more awesome days to celebrate since then. I never fully appreciated all of the amazing people in my life until that day and have been thankful for all of you since :)

I'll post a picture of the tattoo after I get it (if it turns out good, fingers crossed) and let you know what treatment we are going to take after I talk to Dr. Prados on Thursday. Hugs and kisses to everybody!

Good News Confirmed :)

At my appointment on August 8th at UCSF, my doctor confirmed what I had been told by Kaiser, that my tumor has not grown since my last MRI or in the 6 months since I started on this new drug! My doctor even thinks that there's a possibility that it has shrunk a little. It is a little hard to tell when comparing the 2 MRI's, but side by side, some of the blobs look slightly smaller :) And regarding the possible new growth that Kaiser had mentioned, my doctor at UCSF said he couldn't see what they were talking about and dismissed it as either nonexistent or nothing to worry about. He was still very excited that I'm having so few side effects!

Tomorrow my mom and I are driving up to Oregon to be in another walk with the National Brain Tumor Society in Portland on Saturday, August 20th. My Uncle Jim has organized a team called Walking with Laurie and it is sponsored by his nonprofit horse rescue, HyTyme Equine Rescue. If you are interested in joining us at the walk or making a donation, you can find our team page at the following link:

http://www.braintumorcommunity.org/site/TR?pg=team&fr_id=1665&team_id=47643

Asimportant as this walk is to me and the work of the NBTS, I feel just as passionate about the selfless work that my Uncle Jim, his family and all of his volunteers do for the sake of helping horses who can't help themselves. This ambitious undertaking and the staggering costs of feeding and rehabilitating the rescued horses has seen Hytyme face extremely difficult financial times recently. My uncle is one of the most compassionate people I know and it would mean the world to him to be able to continue the important work HyTyme is doing to help horses in need. If you are interested in finding out more about helping rescued horses or to make a donation, please click on the following link:

http://www.hytymeequinerescue.org/HyTymeEquineRescue/About.html

I'mreally looking forward to this trip up north :) Mom and I will be visiting lots of our friends and family up in Oregon, staying near Bend, on Mt. Hood and in Portland, and I'm going to get to see a couple good friends of mine from high school! My dad and Zach are flying up on Friday and will join us in the walk on Saturday. I know that this walk will be just as amazing as the San Francisco one and I can't wait to see everybody!

I have to finish packing because we're leaving at the crack of dawn, so I must put myself to bed now, but I hope that this post finds you all happy and healthy and enjoying this lovely summer :)

I will let you all know how the walk went when we get back. Hopefully we'll be blessed by the sun gods and be spared the Portland drizzle that reminds me so much of my childhood ;-)

XOXO,
Laurie

Man, how long has it been?

No apologies, I just really suck at blogging.

In April, I went to Cabo with my parents for nearly 2 weeks :) Dena stayed with us for almost a week, then a couple days after she left, Erin came for the last week and she and I flew home together. We have a timeshare there with a great pool and a beautiful beach. This was the first time I had tried swimming since the paralysis in my left leg. It was SO weird! My mom and Dena and I went into a shallow hot tub one of the first nights and I realized that dead limbs float :) I carefully made my way down the stairs and I actually had to really think about pushing my leg toward the floor of the tub. We all got a good laugh out of that.

I quickly realized that swimming, or I should say getting into the pool, is a very stressful undertaking. Walking without my brace is really difficult because my foot wants to twist inward and I always run the risk of twisting my ankle. Therefore, I have to walk very slowly when I don't have my brace on. Unfortunately, this can be very painful when walking on a scorching hot pool deck or sand :( The first time I tried to get from our chairs to the pool, I started freaking out from the heat and my parents had to throw a towel on the ground for me to walk on. As much as I LOVE being seen in a bathing suit, this only drew more attention to me and I basically wanted to run screaming, which I would have done, were it not for my bum leg. So, I just got to be the poolside entertainment.

The next day we tried hanging out on the beach. This went pretty well until I had to go to the bathroom. I didn't want to take the time to put my brace and socks and shoes on, so I tried making my way to the steps barefoot. Bad idea!!! The sand was even hotter than the pool deck once I got out of the shade and Dena and my mom had to rush over to me with another towel to walk on. Again, all eyes on me. The stairs were still a long way off, so I opted to head to a low wall that was closer. This, of course, was right in front of the beachside restaurant and as I got on my hands and knees and tried to get up, a couple men from a nearby table came rushing over to help me, as well as Mom and Dena. And mind you, again, I am in a bathing suit. I can think of few times that I have ever been that humiliated and I hobbled up to the room in tears. The lesson here... things in my life just take a lot longer these days. I have to take the time to put on my brace and invent a water-compatible brace that doesn't require shoes and socks.

The same day that Erin and I flew into San Francisco, my cousin, Zach, flew in from Florida to walk with us in the National Brain Tumor Society 5K and to stay with us for a whole month! I hadn't seen him in several years and I was so excited to have so much time to reconnect with him. Also, the following day, our good friend from high school, Emma, and her adorable daughter, Mia, came from Australia to walk with us!!! I had not seen Emma in 9 years, since I was first diagnosed, and it was SO amazing to get to spend several days with her and Mia. My whole family was ready to adopt both of them! Amazingly, those weren't the only out-of-towners to join us. My good friend, Miriam, came from Portland and Erin's uncle and girlfriend came from Idaho! Not to mention folks from all over the bay area and Sacramento and Tahoe :) An old friend and roommate of mine from my Cal Poly days, who I hadn't seen in probably 12 years, volunteered at the walk and met up with all of us for lunch after. In all honesty, I know it was the best day of my life so far. That night, exhausted from the day and all of the emotions it brought up in me, and after reliving the highlights with my parents, Zach and Emma, everyone went to bed and I was left sitting on the couch in the living room, all by myself. I had the best cry I can remember. I have never felt so extremely loved by so many amazing people and it made every minute of my struggle over the last several years absolutlely worth it. Whether you were able to make it to the walk or not, I am so extremely lucky to have the friends and family that I do in my life. I love you all so much!

Emma and Mia stayed with us for 3 more wonderful days, and I had an MRI the day after they went home. The results of the MRI were as good as we could have hoped for by showing no tumor growth :) It appears that the trial drug I'm on is still working and my doctor at UCSF has told me that I am the only person on the study who has not had to have their dose lowered due to poor blood cell counts. Apparently I am doing better than anyone else in the study. As happy as I am that I am doing well, I feel terrible for those who are not faring as well. I've been told that some of the people started in worse shape than I was, and others can't tolerate the effects of the chemo on their immune system. For some reason, I've been blessed with a pretty strong immune system and a stomach of steel so I have experienced no nausea on this medication.

I had my 6 month MRI on July 25th and have an appointment at UCSF tomorrow to discuss the results, though, from my doctor at Kaiser, I have been told that, again, the tumor shows no signs of growth! I guess they did see something that looks like a tiny new growth, but my doctor didn't seem too concerned. I suppose they would just treat it with the same medication I'm already on. I'll let you know after my appointment tomorrow.

Let's see, what else??? We got a new kitten :) My sister's family was adopted by a stray cat who promptly got herself knocked up and had 8 kittens. We took one and she is the cutest little shithead ever. Her official name is Eliza Doolittle because she's very petite and reminds me of Audrey Hepburn in My Fair Lady, but we all just call her Little Kitty. She has two personalities... asleep and hell-raiser. The other cats despise her and Horch doesn't really know what to think about her. She's just so cute that it makes it easy to look past my bloody ankles and arms :)

Having Zach as a playmate for a month, I felt a real loss and mourning after he left. We really bonded and I almost think we were twins separated at birth. Luckily, he had a friend who was moving to the bay area 3 weeks later and hitched a ride with her and is now living with us again, trying to find work out here to make a permanent move! Unfortunately, finding a job is a nearly impossible task these days, and he's hit some big road blocks, but we're trying to stay optomistic that something will work out soon.

My dad finished the basement several weeks ago and it is SO awesome! I'm mostly moved in, I just need to start hanging pictures to make it really homey :) It stays about 5-10 degrees cooler down here which makes it perfect in the summer, and the propane stove that my dad had installed heats it really quickly in the winter. It's as awesome a setup as a 36 year old can have living with her parents in the middle of nowhere, lol! My dad made all of the cabinets and shelves in the bathroom, kitchenette and closet from scratch and laid the hardwood floors. He really is a craftsman! Thank you Dad, so much, for the work you put into my new digs... I absolutely love it! Check out the pix below. Pretty nice huh?!?!?

The Best Birthday Present Ever!

I had a much anticipated and nail-biting doctor's appointment today at UCSF with the best possible outcome I could have hoped for! I had an MRI on March 15th to compare with one that I had taken 2 months earlier, to see if the trial drug that I have been on is working, and all signs say that it is kicking butt! It is such a nice feeling to walk into a neuro-oncologist's office and see him smiling :) During our visit, he was thrilled to hear that I have had virtually no side effects from the medication. He always does a thorough neurological exam, asking me to follow his finger with my eyes or does it feel the same when he touches one side of my face vs the other side, that sort of test. I passed with flying colors, except my bad left leg, of course, and everything seems to be stable.

I had ANOTHER issue with getting the MRI images from Kaiser, but eventually was able to pick up a CD yesterday to take to my appointment. Since I couldn't get it to him earlier, they had to reformat the pictures to be able to compare them, apples to apples, with my previous MRI, which they weren't able to finish until after we left the hospital. In the appointment, he said he had looked at the new MRI and didn't see anything that concerned him, but that he could not confirm that for a couple hours, until they could officially compare it to the previous MRI. Finally, just after 5pm, I got a call from him saying that my tumor looks stable and that he was very happy with the results :) It is SO much nicer getting to write this kind of post rather than the ones I dread!

On another nice note, my mom and I just got back from a wonderful trip up to Portland and Mt. Hood to surprise our good friend for her 60th birthday. We saw a bunch of friends who I grew up with, as well as my uncle and cousin and one of my best friends from high school. It was totally relaxing while we spent 3 nights at our friends' cabin on Mt. Hood with a fire blazing, snow falling outside and a river running past, then a total party over the weekend when we stayed at a hotel in Portland for the surprise party. We were exhausted by the time we got home, but it was well worth it!

To further add to our fun/exhaustion, we flew in to Sacramento yesterday then drove to San Francisco where my sister, her husband and my niece met us to celebrate my birthday and go to my appointment this morning. We had a great time and had a nice lunch at Fisherman's Wharf today to celebrate the good news after my appointment :) Dena's family got me an awesome new camera for my b-day, so I'm finally going to start taking pictures of the basement remodel and post them so you can see the fantastic new room Dad's finishing for me.

It's been a busy, super cool week, but I tell ya, my bed is feeling pretty friggin good right about now :) I hope this finds you all doing well, or at least reminds you that life is one big, long roller coaster. One moment you're scared as hell, going up hill with your stomach in your throat, then the next, you're screaming for joy as you zoom around the twists and turns. I just celebrated my 36th birthday and there was a time when I was worried that I wouldn't live to see my 26th! As hard as we try, we just can't plan exactly what's around the corner. I've been forced to learn to do the best with what I've been dealt and to keep flexible and adaptable when life throws me a challenge. I'm starting to realize that optimism and a good attitude really do pay off :)

With that little nugget, I bid you all farewell, I'm pooped! Until next time...

Oy Vey! I totally hate pictures of myself, but I had to post this one of my new, super short, hairdo :) The right side usually doesn't really want to behave correctly, but I'm having fun with it (plus it takes me like 10 fewer minutes to get ready in the morning). Goodbye flat-iron!

Good Grains!

Ok, to start, Erin & Tommy FINALLY got back from New Zealand, totally safe and they had an awesome adventure. Apparently the earthquake didn't derail their plans at all and they had a magnificent time. I'm gonna see my BFF tomorrow, for the first time in a month, but it feels like a year. I'm gonna have to have a chat with her about taking such long vacations from me ;)

I haven't written any recent posts simply because I haven't had much to write about. I've been taking my trial drug pills and honestly haven't had any side effects or other drama in my life, so fortunately, life's been pretty chill. I've re-established a relationship with one of my cousins, which just makes me smile from ear to ear and I've been baking like a fiend, but not too much else going on up here in the sticks.

On the baking note, I must admit that I've perfected an AWESOME multi-grain bread that will make your head spin. I just finished making 2 loaves and a dozen rolls and they turned out spectacular. I don't like to toot my own horn, but I LOVE making bread and this one kicks ass. It's got oatmeal, cornmeal, quinoa, brown rice, a nine-grain blend, flax seed, honey... it's like a meal all by itself. If I ever make a name for myself in the food industry, it will be with this bread :) I feel so in touch with my pioneering fore-mothers!

The basement is well on its way to being finished, yay! The guys are coming tomorrow to finish the bathroom and mini kitchen which should just take a couple days. They will also finish installing a propane stove to heat the joint. Dad's planning on getting some help from his BFF to install the flooring near the end of March, so it should be move-in ready by early April :) We just bought an awesome rustic armoire and nightstands for a steal which should add to the cabiney feel, plus give me some staorage space. I'll post a bunch of pix as we near the finish.

In terms of the whole "cancer" issue, I don't have much interesting to post at the moment. On March 15th, I have an MRI scheduled, my first one since starting on the trial I'm doing. It will tell if the trial drug I'm on is working (no tumor growth or shrinking) or if it isn't (tumor growth). I have an appointment with my doctor at UCSF on March 22nd where I will learn the outcome of the MRI. My 36th birthday is on March 21st. I'm planning taking a long pause to celebrate what I never thought I'd experience when I was first diagnosed at the age of 26. I never even thought to look past a few months at the time, and now I'm here, happy as a clam, nearly a decade later. I'm trying not to think too much about it and just enjoy the simple things in life like my amazing friends, family, baking, crocheting, the approaching spring, my upcoming trip to Cabo (April 22nd-May5th), the happy, frolicking cows I see as I travel down Fiddletown Road, etc. If the drug is working, I will stay on it for at least a year, assuming it continues working. If it is not, I will move onto the next trial, and so on. I've been feeling REALLY good lately, physically and emotionally, so I have to take that as good news :) My legs are getting stronger which makes walking and stairs easier to navigate and I'm just getting used to my disability, to the point where it pretty much feels normal these days.

I hope this posting finds you all looking forward to the warm breezes of Spring and the thawing out of Winter bones :)

XOXO,
LG