A new journey

Good Morning (technically, good afternoon). I had a little freedom in my schedule and decided to update my blog as I am in need of a place to release some frustrations and share some successes. I expect this will be a shorter post as I am limited on my time today.

I followed up with my neurologist this morning and needless to say, I was pretty dissatisfied with my appointment (as usual), with the exception of the final decision of the attending physician. I met with my usual resident MD and we began our 3 month ritual of describing everything I was experiencing and dancing around the issues 4 or 5 times before he finally goes to communicate this information with the attending, and the process starts over again. I do not ever feel as though these doctor's listen to what I have to say, and while I understand that I am not an easy patient to work with; I know what I am experiencing and when they brush off my complaints as nothing it makes me very upset. Today the Attending Physician presented himself with a particular egotistical air about him and some of his comments came across as uncouth and sexist. I do not take well to men who question my intelligence. Women in this country have to work their asses off to gain respect in this field and I'll be damned if a male Physician is going to insinuate that he holds a superiority to me in intelligence and education. Not trying to brag, but if we want to play the who's smarter game I'd be happy to throw out that I made a 95 and 98 respectively in neuroscience I & II; so I have an idea of how things work in the brain and central nervous system. I come from a very well educated family of engineers, physicians, journalists, and college professors so I think there is something to be said there. Anyway, I digress; basically I wanted to punch them all in the face when I left. The only aspect that I was in agreement with was to move forward with another EEG next week to determine the course of medication changes for me in the future. I am hoping the EEG shows that activity has been reduced in terms of focal seizures, and we can begin adjusting medications accordingly.

I continue to work Full Time and feel better each week, so I am happy to continue the upward progress. I walked 1.33 miles outside and I realized it will be quite some time before I am able to tolerate outdoor activity without getting irritated or over heated. In the meantime, I will continue with my yoga regimen and I'm looking to up my practice for strengthening and balance improvement. The yoga really helps, especially on the days that I desperately miss running. I'm so proud of my friends who are accomplishing so much on their running journey, but I desperately want to be next to them running as well. I have to remind myself that it will take time and that I will eventually get there; maybe not this year or next; but I will eventually return to the sport I love.

Jeramy has been selected as a blood donor candidate for Bone Marrow transplantation and so we will be traveling to Dallas June 5th-9th to participate in the Be The Match Program. All our expenses are paid through the company and we will even have a driver to take us where we need to go. I look forward to this experience and will likely blog about it during our time there.

This weekend we travel to Austin for Heather's wedding. Jeramy will be serving as an usher for the event and so we will likely be very busy the entire time we are there. It will be good to see family that we have not seen in some time and I look forward to spending some quality time with my parents and sister's and Jeramy's family.

Chemotherapy is DONE!

Today is a GREAT day! 

I had another follow up appointment with my oncologist and the decision has been made to conclude chemotherapy. I only have to continue with 3 month MRI scans and don't go back for another oncology follow up for 2 months. This decision was one that I did not come to lightly, but after the complications I experienced with the last round of chemotherapy, I decided that it was time to conclude this type of treatment and monitor from here on out.

My Oncologist advised that I just take a longer rest period between treatments, but I had such an awful experience this last round, that not even waiting would be enough to get me through the last 2 treatments. Based on my stable MRI scans she agreed to continue with monitoring through imaging and follow up appointments and to reassess later if anything changes.

I started back to work full time on the 20th of April and I have been doing relatively well for the most part (just experiencing mainly fatigue from all the medications and an increase in hours). I go back to see my neurosurgeon next week for another follow up and then neurology the week after that. Since returning to driving again, I have experienced unfavorable side effects with the Dilantin, that make me not want to be behind the wheel due to fatigue. I feel a change in medication is necessary so that I can function more appropriately throughout the day with less mental fog and increased alertness.

Sadly, my grandfather passed away this past Saturday morning and so we have been spending the week preparing for family and cleaning out the old house to prepare it to be placed on the market. Many of you saw the post I placed on facebook about the 5 watches we discovered in a drawer in my grandfather's bedroom. These 5 watches had at some point over the years, stopped working. Interestingly enough they all stopped working at 3:07, which was the time he was pronounced dead at the hospital. Many of the family have been spooked by this incident, but I find it extremely cool. Five watches for five family members to remember him by.

I continue to take mannatech product and I believe this is the sole reason my Complete Blood Counts (CBCs) have remained normal through this process. The only challenge I encountered with my labs were low platelets. Normal ranges start at 150,000; mine dropped to 83,000 at one point during therapy. I am very happy that I no longer require weekly needle sticks and won't have to have lab work done for 2 months!!! I tracked down the young woman who was interviewed about mannatech by 20/20 in 2007. She had been diagnosed with a grade III Anaplastic Astrocytoma and had undergone surgery but they were unable to remove the entire tumor. She opted to remain on mannatech and skip chemo and radiation to monitor and about a year later her scans turned up clear with no tumor progression. Unfortunately the 20/20 episode was twisted and manipulated to make it look like she "got lucky", but the research that is being done on glyconutrients is very promising and as far as I can tell, she is alive and well today with no new tumor growth. If you are interested in more information on mannatech I suggest visiting this website to read the research www.mannatech.org. You will need to have access to PubMed to read the full articles on glyconutrients.

I went back online to research more on alternative cancer therapies and why I would not qualify for the Gerson Therapy Institute. As is turns out, brain tumors and mets are contraindicated for the Gerson therapy because the treatment can create inflammation (a necessary and important aspect for healing), which can create more issues for the brain. In other areas of the body, swelling has room to expand and move as needed to help in healing. In the head, your skull prevents swelling from expanding and as a result can lead to a higher risk for seizures and complications. As a result, folks with Brain Tumors and Mets cannot participate in the full treatment because the risk is too high. They did state that I can do a modified version of the treatment, but if I can't do the full treatment, it is not going to be as effective. If you are battling cancer, I would highly suggest you look into this before starting a chemotherapy and radiation regimen. www.gerson.org. Not every type of cancer can be treated with this, but some of the cancers that have no pharmaceutical treatments can be (like melanoma) and even things like ulcerative colitis can be as well. It is totally worth your time to look into. Jeramy had an aunt who was diagnosed with Breast Cancer and chose this program instead of the traditional radiation and chemotherapy treatment. She is alive and well today and cancer free.

The second option that we have been researching is CBD oil from the marijuana plant. As it turns out, this research has been proving very promising for brain tumor treatment and epileptics. So promising in fact, that Jeramy told me we'd pack up and move to Colorado in a heart beat if my tumor ever returned or progressed. I like Colorado, but I love my health insurance, so I am hoping to continue on my current path of healing. Even the Brain Tumor group I am a member of discusses the specific strands of CBD oil that have been found effective in treating cancer. It is a very viable option and honestly, less intense than chemotherapy.

I have also set a long term goal. I will in the future, once clearance has been received to return to running, fund raise for the National Brain Tumor Society in hopes to procure a spot in the coveted Boston Marathon or New York Marathon. This goal is probably several years in the making, but I feel it would be the ultimate return to the sport I love and a great way to celebrate my survival!