Brain damage

Well today I received another microphone from the company that manufactured my old one so far, it works. So did the last one for little while. Right now it is for 15 in the morning and once again I'm wide awake I feel tired but I cannot sleep may be the sleep center of my brain was destroyed. This has become my weekly routine up all night and sleep all da the only real news I have to share is that on Friday I have an outpatient surgical procedure to put in a porta catheter on my chesty is infuriating! d sleep all da the only real news I have to share is that on Friday I have an outpatient surgical procedure to put in a porta catheter on my chest Tuesday, next week I will have a nether infusion of Avastin really if it does not work this time perhaps people will see my point since I blame to the drug for the first weakness on my left side. I'm quite nervous about both the surgery and the infusion. after small group this evening I came home and once again my apartment smelled bad thanks to my neighbor tenant who wants to smoke himself to death. I am so tired of living here! I've had people drop by during the week to help me out with something and they could not stand the smell either. However, my search for a new apartment continues. honestly, what else will I be forced to endure? over my, now it's 4:22 AM. still not enough sleep!

Bad medicine

So I am trying to get used to my new software but it still takes some getting used to. I thought I would blog more often once I got this software but I haven't been so allowed me to catch you up next week I have several appointments one with an oral surgeon I neurosurgeon one with a and the following week one with an oncologist, and yet another MR. it looks like I'm going to be busy for a couple of weeks besides I still have my physical therapy appointments to go to I got back from Michigan last weekend I had a great trip! to whether a nice and not too humid. it is a good thing I went at very early summer. of course I did not take any pictures on the strip but I do have one of the tigers game that we went to you know that famous tigers game about the umpire who ruin and a really nice pitcher's record for you're a perfect game! I don't know you may have heard about it on the news :)

The Waiting is the Hardest Part

Dictated by Carina, typed by Lesley.

I know that people are asking for updates, so this is the best I can do for now.

On December 11, I had an infusion of the new treatment that my doctor’s had been recommending called Avastin. I got it at UC Davis (because I live in Sacramento, this is where my community is and it made the most sense). The infusion was in my left arm and it took an hour and a half and when it was done, about half an hour later, I could no longer move my left arm or leg to its normal ability. This persisted through the weekend, causing me a scare because all of a sudden I was unable to take care of myself.

I called my neurosurgeon in San Diego because he has always been very thorough with my care and he said that I needed to immediately go to an ER and tell them about what was going on and to get a CT scan to make sure that there was no brain bleed. I also called UC Davis to tell them what happened and they took 3 hours to call me back and tell me the same thing, to go to the ER.

I ended up flying to San Diego because my doctors in San Diego provide me with better care. I was admitted into the hospital for the night. A CT scan revealed no brain bleed (Yay, that’s what we wanted!), but a lot of swelling on the right side of the brain pushing over to the left. So I was immediately put on steroids to reduce the swelling and I was also given a drug called Manatrol to suck all the fluid out of my body. Neither of these things would help in the immediate sense to give me movement in my arm and leg on the left side.

I was sent home from the hospital on high dose steroids for a day and I am now slowly tapering off the steroids on a week by week basis. Though all of this came by a surprise, I wish to extend my love and gratitude to my friends, to my family at church, to Scott and Jennifer, and to countless people who have offered to help me in anyway they can, just to make being an invalid a little easier. I have tried to be strong because I thought that’s what God wanted me to do in all of this and it has been hard and I have lost my hope a couple of times but because of everyone’s help, each day gets easier and I can stretch my left arm a little bit, even though it still won’t move like normal. I can walk for the most part, but I look funny on my left side because my arm is basically dead weight.

Last night my friend, Marianne, took me to the gym to try and loosen up my muscles with a spa treatment. I was very buoyant in the water and almost fell over but got to relax for a little while, which was nice. I still cannot stretch out my arm, move it freely, or open and close my fist. At least my left leg is slowly coming back to life and if feels good to walk for the most part.

There have been people who have been so friendly. For example, a kind woman at the gym helped me get dressed after my shower because I could not do it myself. A stranger came up to me in the spa and asked if she could pray for my arm and she also gave it a massage. It is an uncomfortable practice for me to learn how to let other people help and love me when it is so hard to do things for other people. So a lesson I’ve had to learn is a little bit of humility and its been rewarding to watch how when I let someone help me, they seem to feel good about being able to be useful and sometimes just allowing them that opportunity is enough of a blessing for them as opposed to me slapping them in the face and rejecting their help.

Today I am excited to go out to a movie with a friend who struggled with breast cancer and who has been through quite a battle. We are going to go shopping and I am going to finally get some new walking shoes! We are also going to have a girl’s day at the movies.

I love everyone and I appreciate your prayers and support.

And Carina wanted me to type that I am awesome (she made me type it!!). And this is from Lesley – I love Carina and my prayers are daily going out to her!!

Headache Medicine

I haven't updated about my condition in a while. So here's a little something, with more to come soon.

I went to see my Radiation Oncologist and Neurosurgeon in La Jolla last week for our regularly scheduled follow-up MRI. It's always been a little tough for the technicians and/or nurses to find a vein, but they've always ended up finding one after some time and patience.

Not this time. I was poked and prodded 3 times to no avail. We called my doctors to see if I should go ahead and do the MRI without contrast anyway. They said to go for it (after all it is 8 hours away from home each time I go see them). All this MRI showed was some swelling at the radiation treatment site. Normal. Explains why I am having headaches again. I've been taking some Hydrocodone (Vicodin) again, which I never took the first time that I went through the 6 weeks of radiation treatment. It dulls the pain and makes me drowsy, but doesn't relieve the swelling, so I opened up my old scrip of dexamethasone. (Steroids). Since thursday I've taken a total of 4 pills, but will likely start taking 4 a day. Swelling is a normal side effect of Radiation treatment, but steroids are no fun.

I still get headaches periodically throughout the day. And in 6 weeks I am going back to La Jolla to see my doctors for another MRI, this time intended to be successful so that I can have the normal Contrast, Profusion, and Spectroscopy included.

I'll be seen first in the Infusion Lab for an Ultrasound so that a vein can be found and successfully used to inject the contrast and the profusion. I'm hoping and praying for favorable results. (tumor shrinkage..no spreading).

Other than that, I'm trying to stay cool in the Sacramento Heat this summer. Not too terrible today, only 93. ;)

Biopsy Results

This is a duplicate of my other recent blog post, but intended for readers who do not see that blog on a regular basis.

I wanted to take a little time to post a quick blog about my recent trip to San Diego and update all of you readers since I know that you've been concerned and anxious to hear about my situation.

I flew into San Diego on Monday the 11th. I had a few preliminary appointments to get cleared for surgery on Wednesday. Lab draws, the go-ahead from anesthesiology, and another MRI to map specific points in my brain to be used as a GPS during surgery.

The biopsy results (including path) revealed that the increased blood flow and duration results from the Profusion are consistent with tumor recurrence. Obviously not something that I want considering that I have not even been battling this disease for a year, and yet there are already signs of progression. Additional surgery is not a desirable option or part of the current plan. Instead I am to receive another radiation "boost."

More radiation means more radiation to the area that was already treated last winter. Another round of radiation has its risks, and I am told that most hospitals wouldn't provide this type of treatment a second time for the same beast. Because the area to be treated is small at this point, and because it is adjacent to the cavity where my initial tumor was partially resected, my doctors advise to proceed with more radiation.

The plan was to go ahead with 5 days of radiation treatment to this area starting Monday. My original UCD Radiation Oncologist never shared specific information of his treatment plan/summary with my Radiation oncologist (Dr. Murphy) at UCSD, so I've decided to complete the footwork to get this information expedited as soon as possible and then resume treatment in San Diego on May 26. I am not encouraged to "sit and wait" or to avoid treatment altogether, but I just didn't feel comfortable rushing into treatment so soon knowing that the concise plan from my previous treatment was not readily available for my San Diego Physicians. Although the information is unlikely to have a profound affect on my new course of treatment, I feel more at ease to go through with this course of action.

Hope for a Cure

I'm simply touched by my best friends thought and inspiration to run in Washington's Race for a Cure this passed weekend. She ran in celebration of me. The encouragement and support from loved ones makes this process all that much easier.

I've decided to include a copy of the email that I sent out to friends last week to provide some information and update of my situation as it currently presents itself. I apologize to those who have contacted me with gratitude about my posts and my story. I apologize for being so slow to update! It won't always be this bad!

Some of you may know that I went to San Diego this past week for a follow up appointment with my Neurosurgeon and initial Radiation Oncologist. I also went to take a couple of MRI exams that I would not have had in Sacramento.

My new MRI scans looked good. There wasn't really an actual tumor, but areas with cancer activity, or as my doc put it "cancer cells hiding in the bushes." It's a little harder to explain without a visual. :) So this was good news to hear. I was told to proceed as normal, and continue with my usual activities and to follow up in another few months.

The MRI I took was in three parts and I was only able to receive the first result which I already discussed above. My MRI also included Spectroscopy and Perfusion. Fancy tests that I can't really describe, but measure blood flow. The perfusion test results were not going to be ready that day nor the spectroscopy. Dr. Alksne (my neurosurgeon) advised me that he would call me when he got the results if there was something that I needed to know.

The radiologists were unable to clearly interpret the Spectroscopy results, so we don't actually know the findings of that exam. I am told that once Dr. Murphy (oncologist) returns from his conference, he will try and interpret them himself, as well as a few others from the department.

So I received a call from Dr. Alksne on wednesday regarding the other test results. The Perfusion exam showed increase blood flow and duration behind the cavity (space where tumor was surgically removed) that was treated with the initial radiation. Increased blood flow and how long it lasts in that area can be signs of either tumor spreading, recurrence or even radiation effect. We want the radiation effect, because that would obviously be less concerning. Radiation effect is also necrosis (dead tissue) for those who aren't up on their cancer lingo. :)

Because the radiologists report suggests that the findings are due to tumor recurrence, more tests are needed. Dr. Alksne is not rushing to any conclusions at this time and is going to consult Dr. Murphy upon his return and also speak with other physicians at the next Brain Tumor Board which will be held May 5. If the consensus is that the results are more consistent with recurrence, I will have another radiation "boost." This would be over a few days and is an outpatient procedure. I would not have another balloon inserted into my head (sorry Uncle Kevin-no space age hats) but have the fractionated beam treatment instead. However, before any of this begins, if more treatment appears necessary, the first step will be to perform another biopsy. When speaking with Dr. Alksne, this seemed to be the likely next step no matter the result. The doctors do not want to assume treatment is necessary and do not want to wait the original proposed three months before the next follow up.

More than anything else, this just speeds up my next follow up. There isn't any reason to worry now, and even if I have reason for concern when I get further results, I can't let myself worry! What for?

Dr. Alksne did say when I asked him if this news changed anything that he told me while I was in his office, and he said that it does not. We just don't want to let this situation continue if it should become an issue. I am still doing well. I feel well. I am interested to find out more about the exam results, but I believe that I will be well regardless. :) God still needs to use me.

So, to recap;

I will find out very soon after the May 5 Tumor Board meeting, what my next step is going to be. Either way, a biopsy is likely. (Maybe I can help you with that yard work Kevin). :)

If any of you have questions, feel free to email me.

Love to you all!

A New Blog with Info

I have another blog, and on it I have a widget that allows me to see who views my page. Because so many have come to that blog searching for info about Anaplastic Astrocytoma a brain tumor, (WHO grade 3) I have decided to dedicate this blog to my journey with the illness in hopes that some will find helpful information for either themselves or their loved ones. I hope that in some way this will do.

I was diagnosed on August 29th 2008. As I start this new blog, I am finished with treatment. I had six weeks of radiation therapy, some resection surgery, and six weeks of chemo to date.

The diagnosis came out of left field. My only symptoms were headaches-of which were the worst of my life. I woke up with throbbing pain in both the front and back of my head. There was one instance where I was sick (vomited once) and had some vision changes (blurry peripheral vision). This was for one isolated incident only. A few days later, I had another severe headache early in the morning, and moderate nausea/vomiting. Two of my close friends took me to urgent care, where I received a shot of morphine to kill the pain. I was then advised to follow up with my primary care physician in case I would need further shots of pain killers.

When I followed up with my primary care physician he ruled out the incident as another "migraine." Now, no one in my family has migraines, nor have I ever had one myself (as it turns out). My first recommendation and piece of advice to those suffering any illness is to make sure you have a doctor who listens to your concerns, and to always get a second opinion.

It wasn't until I became persistent and asked many questions that my PCP (Primary Care Physician) ordered an MRI. And I might add that he only did so to shut me up. He kept insisting that I was having migraines due to hormonal reasons/birth control.

After my MRI I was immediately phoned at work the next day and asked to admit myself to the hospital asap because my MRI results were "abnormal." After days of waiting, and after a biopsy and later pathology results, it was confirmed that my tumor was indeed cancerous. The tumor, to be honest-was quite large. 4.5 centimeters in width, 9 centimeters in length, and 5 centimeters in depth. Roughly the size of my fist and located in my right temporal lobe.

I give the prestory of my condition, not to scare any of you, just to inform you and give you a basic idea of what I was dealing with.

Now before I divulge any further, I want everyone to know that treatment for this type of cancer is truly manageble, pain-free, and relatively stress free. It is my hope that no one would feel overwhelmed, distressed, hopeless, etc. I have been on this journey for roughly 7 months and have been able to live the normal life that I was used to before I was diagnosed. I have continued to work, keep up my activities, and maintain a positive attitude. Now there are things that have helped me through every step along the way, but I am here to tell you that it can be done--if I can do it, then so can you and so on.

At first I was told that my tumor was too diffuse-inoperable. I was confused about that because all the research that I had done by that time was that standard treatment (if possible) was 1, surgery. 2, radiation therapy, 3, chemo.

This is why I recommend getting a second opinion. I saw another brain surgeon who not only informed me that my tumor was operable, but also necessary. The attention and care that I had received at the University of San Diego Medical Center was phenomenal and surpassed that that I had received elsewhere close to my home. I went with the second opinion, had as much of the tumor removed (resected) as safely possible, then proceeded back to my home for the "standard treatment" that is radiation/chemo. Radiation is usually 6 weeks and in conjuction with chemo.

Brain cancer patients are given chemo treatment via a pill called Temodar. Temodar, when taken as directed (follow instructions carefully) is quite easy, and has mild if any side affects. I never got sick on chemo, and I did not lose all my hair to chemo. I have experienced some hair loss (thinning) due to the radiation treatment. Radiation causes the hair to thin some, where the radiation is directed. More on this later.

More importantly, I am available for specific questions if needed at cargate2@gmail.com. Please email me with specific questions. I will update this blog periodically when I see that more info needs to be included.