Surgery- CarePages

Surgery

Posted Jan 25, 2012 11:19am

Edit: REPOSTED FROM CAREPAGES

We made the definite decision to have another surgery and it is scheduled for March 1st. I will still be getting the vaccine after the surgery. I had to put it off 2 weeks because Faith has a cheer competition in Dallas, TX at the end of February and I don't want to miss it. I had to miss her Vegas competition because of my last surgery in December. I just really want to be there for my kids as much as I can right now, because I don't know what the future holds.

Our new macrobiotic (plant based) diet is working out well. It's not as difficult as I thought it was going to be and I think that's because my wonderful husband is doing it with me. The hardest part for me is no sugar and I have a big sweet tooth. The no meat part isn't as hard as I thought it was going to be. The energy we feel is great. I didn't think I would have this much energy. We didn't put the kids on this diet, but they are only eating organic foods and mostly plant based foods, they even like tofu!

Third Times a Charm!- CarePages

Third Times a Charm!

Posted Jan 18, 2012 10:12am

Edit: REPOSTED FROM CAREPAGES

Today Sean and I went to UCLA to meet with Dr Liau, a Neurosurgeon about my treatment options. We were happy to find out that UCLA has a brain tumor board that meets every Wednesday to discuss their patients. Dr. Lai, who referred me to Dr Liau, is on that board and brought my case there to be discussed. Dr. Liau told us that the consensus of the board was for me to have another surgery. They did discuss the pros, cons, and other options and all (other neurosurgeons, oncologists, and radiologists) came to the conclusion that I should have another surgery to try to get most, if not all of the tumor out.

My other options are to have chemo and/or radiation, do nothing and monitor it every 3 months or have another surgery. I can always get chemo and radiation later if we choose to or if the tumor grows or changes into a higher stage.

Dr. Liau is also one of the doctors who is behind the brain tumor vaccine and just this year they started allowing those with low grade tumors in the clinical trials, so I would qualify for this if I have another surgery.

Sean and I both really felt that this is the best option for me. She can do the surgery and then use the tumor and my white blood cells for the vaccine, which I will be injected with every month for 3 months.

We also had a great weekend camping in Julian our new RV. The boys fished and caught many leaves! They also rode their bikes. We sat around the campfire, went into town and had a great family time. I'm looking forward to this summer when we drive across the US!

Where to go- CarePages

Where to go?

Posted Jan 13, 2012 12:17pm

Edit: REPOSTED FROM CAREPAGES (again that support group was with the San Diego Brain Tumor Foundation)

Last Tuesday Sean and I spoke with the surgeon who did my last surgery at UCLA. He explained that after looking at my MRI images with the radiologist there is about 50% of the tumor remaining. He did a great majority of the surgery based on feel as the tumor felt different than the normal brain tissue, so he thought he got it all out, but he didn't and he wanted to be conservative and not damage my brain.

We then went to UCSD to see another neurosurgeon and oncologist. The neurosurgeon said he could remove the tumor by doing a fromtal lobectomy, where he would remove some of the good brain tissue as well as most of the remaining tumor. The oncologist thought there may be too much risk in that of me losing more of my short term memory or having some weakness on my lefthand side again and the neurosurgeon agreed and said that surgery could be done at anytime so we could wait on it.

The oncologist thought that we should do radiation and chemotherapy. He also gave me a timeframe of 3 to 8 years to live, ugh. We have met several people in the support group who have done radiation and they do a mild radiation since the tumor is so close to the surface and that way any good brain cells damaged have time to heal before the next treatment.

We went to a support group after the doctor appointments at the Moores Cancer Center at UCSD, where most people have seen the two doctors we saw there. From what we gathered it seems like UCSD is a little more aggressive and UCLA is more conservative in their treatments. They really seemed to push their clinical trials in which the one I qualify for I would have a 50% chance of getting just radiation or getting radiation and chemo. Or we can pick the treatment we think is best.

Right now I am at a place where I want to attack this thing and be aggressive so I have more time in the future with my children. I have an appoint next Tuesday at UCLA with Dr. Linda Liau, a surgeon who has seen my MRI and thinks she can get the rest of the tumor out.

So right now I just pray that God will guide me to the right decision. We have also switched our diet to be macrobiotic (very close to Vegan) as so many cancer patients report a reversal of cancer or that it stops growing while on this diet plan.

Support Group- CarePages

Support Group

Posted Jan 4, 2012 12:07pm

Edit: REPOSTED FROM CAREPAGES (This was our first time attending the San Diego Brain Tumor Foundation Support Group, of which we still attend and fundraise for as they have done a great deal to help support us emotionally).

Sean and I attended a support group through the Brain Tumor Society last night. It was very informative. Many of the people there had the same type of tumor I have and it was nice hearing about their treatment (the good and the bad). Many have also seen the same doctors that we are researching at UCSD. We now have many great resources on Brain Tumors and I don’t feel so alone. It also made me grateful that I have the type of tumor I have.

I learned that I am not alone in hating steroids and I am so grateful that I was weaned off of them. I also decided that 24 months of Chemo is not for me, as there are many more side effects than the one the neuro oncologist told us about. I learned a lot about clinical trials, many people have gone that route, which is something I will be looking into.