Hello Holiday Season

Well, I feel that another blog post is in order for the month of December. Things are about to be even more crazy as the holiday's approach. The next two weeks are pretty much booked in terms of assisting with Club Volleyball activities, Jeramy's employee Christmas party, Dentist appointments, family gatherings and visits, christmas shopping, and my employee christmas party through UMC. Changes have happened over the past month, no worsening thankfully! The quest to find an effective seizure medication continues. I am down to taking 100 mg of Dilantin a day instead of 100 mg twice daily. I almost made it off, but since I am still having seizures (typically between the hours of 2-4pm). We made the decision to hold off on eliminating until I start my new seizure medication.

Speaking of which, I started my new seizure medication today. It is called Fycompa (sp?) Supposedly the half life of this medication is significantly longer, so it only has to be taken once daily. We are weaning off the Vimpat because it gives me significant side effects that are very unwanted and we would like to be able to tolerate going through the day without feeling like I'm going to fall asleep constantly. With the most recent medication changes, my seizure frequency has decreased to about 1 every few days as opposed to several in one day and happening every other day. We are making some progress.

Yesterday I completed a portion of a 10 week women's yoga series that I had been working on with my yoga instructor. For those of you who are not aware, I have been doing yoga for approximately 9 months and it is amazing the gains I have made. I have been doing one private session a week and then meeting up with a class once a week. Yoga two days a week has been challenging and it always amazes me at how sore I am after participating in a familiar series. I think that goes to show that yoga is constantly changing and challenging your practice and skills and never feels the same. There is no plateau with yoga because every time you practice you change and challenge yourself differently. It is the one exercise regime that I have never felt like gets easier, instead I find that with each practice I am able to challenge myself differently and grow with each salutation, etc.

I leave you with this photograph that was taken on the last day of the women's series yoga class and encourage you all to check out Seed to Sprout Yoga and Wellness and look into joining the next women's series in January. If you haven't worked with Lindsay Kerr, you haven't truly had the opportunity to delve into what the practice means.

Coffee and Blogging

Another stable 3 month scan under my belt. It is difficult to believe that just over a year ago, I was going through the most difficult battle of my life. Now I am in a battle to gain my life back and resume my normal activities. Everyone assumes that after you win the battle with cancer, that life just goes back to how it was before. That is a lie. One that I am learning much about at this current point in time. Winning the battle against cancer is just the beginning. There are so many post cancer complications that people don't talk about (particularly for Brain Cancer). Radiation left me with intractable epilepsy; something we are still working to get under control. Working 8 hours a day is the most exhausting and taxing activity I have ever done and by Friday my body is so physically exhausted that I can barely move. Most people love Friday because it is the time when they can sleep in and enjoy the weekend. I love Friday because it allows me two days to fully recover from the week and prepare for another 5 day haul. Emotionally, I am riding a rollercoaster that sees its fair share of peaks and troughs. Some weeks I have quite a few peaks, others it is mostly troughs. When I'm having a particularly bad week, I work to go back and reflect on the past year and realize, I've come a long way.

On a more positive note, we are close to the Holidays! I am looking forward to actually being able to celebrate my birthday this year (without incident) as well as sit at a table with family and enjoy Thanksgiving dinner, instead of having to eat in bed because I'm too weak to get up. I haven't even given a thought to what I want to do for my birthday. At first I felt like I wanted to have a re-do, since I was unable to actually celebrate turning 30 last year, but now I think I'd be perfectly content with just spending time with the people who matter most to me.

The best news of the year? I don't have to go back to see my oncologist until January! That means, no more MRIs or oncologist visits for the year of 2015. People don't realize how stressful it is to always have to go to the doctor, so I am so happy that I can finish out the year without having to see my oncologist. I go back to see my neurologist in two weeks, and if all is going accordingly, I hope to be able to not have to visit her until next year as well! I am just so grateful to finally have a medical team that truly has my best interest in mind and wants to truly help me to get back to leading as normal of a life as I possibly can.

Have a great weekend and Wreck' Em Tech!!!

Hello October

Goodness! Here we are! 3 months left in the year and still running this dang healing marathon. Since my initial visit with my neurologist, I have had a medication change (which was exciting until I had an adverse reaction to the medication and had to stop it two days later). When I went back for my follow up visit to the neurologist, she (and I) were not happy with the seizure activity and felt that a medication change was in order. She informed me that my blood levels were showing that I have a resistance to Keppra and that my body is simply not absorbing the medication. We already knew that the Dilantin was not effective for me, so the plan was made to sub out medications and work to wean off Dilantin in a couple of weeks. Unfortunately, last night, I began to lose the ability to use my arms and my legs (that's a terrifying experience). I attempted not to panic, but felt something was seriously wrong. I grabbed the information packed for the new medication I was taking and found that my symptoms warranted an immediate phone call to the physician's office. It was either that or go to the EC and my experience at the EC has been less than satisfactory, so I chose to contact my neurologist. She informed me to stop taking the medication immediately and to get in contact with her offices on Monday to see about getting in to see her again this week. I seriously hate having to call late at night, but I wasn't sure what else to do. I will go back to see her again this week and I am sure we will try another medication to see if we can find effectiveness elsewhere. I am honestly kind of glad that bad reaction happened because I felt really down and terrible for the two days I was taking it and I didn't like the way it was making me feel. I was trying to give it time to adjust to my system, but apparently my body had other ideas. I guess we will see what she has to say when we go back this next week.

Otherwise, things have been continually busy. Football season has been in full swing and I have managed to find the energy to attend all home games this season so far. It has been a great experience and I am looking forward to finishing out the season.

I feel that my healing goals have adapted lately. Before I was so focused on getting back to running, that it was almost a hard blow to not be able to be as active as I would like. Now I feel like my goals are evolving in an effort to build up to that larger, end goal of returning to the one thing I love. I'm working on baby step goals, or small victories. One of my goals is to be able to get through an 8 hour work day without having a seizure, or feeling worn out beyond measure. Another goal is to be able to tolerate a little more sunlight so I can get out and get some more Vitamin D3 in my system. I feel like these smaller goals are very important and I'm trying to take a page from my own book in my teachings to my chronic pain patient's. It is very easy to be focused on the end result and sometimes it causes you to miss everything in between. I am constantly having to re-evaluate my situation and re-work my goals to accommodate for changing scenarios and situations. I have a new found respect for my chronic pain patient's. Other medical professionals may label them, lazy, unmotivated, etc. but I recognize there is no truth to those words and those who have never experienced hard times, do not understand the constant battles of just getting through the day.


A Quiet mind is all you need. All else will happen rightly, once your mind is quiet. As the sun on rising makes the world active, so does the self-awareness affect changes in the mind. In the light of calm and steady self-awareness inner energies wake up and work miracles without effort on your part.    
           -Sri Nisargadatta Maharaj

Updates from West Texas

Updates from West Texas.

A lot has been happening over the past month. August was a whirlwind, that consisted of vacation, follow up appointments, cancelled appointments, rescheduled appointments, new adventures and quite a few struggles. In summary, August was HARD. It was hard physically, emotionally and I certainly felt like I had more bad days than good (some would argue this, but I struggled). Don't get me wrong, it wasn't all bad. I shined in my yoga practice and even ventured outdoors for a few weekends to begin introducing myself to sunlight again. I made it out to 2 yoga in the plaza practices and really enjoyed doing that, not to mention how good it felt to see the gains I have made practicing yoga. I even ventured out to make it to the pool for an hour. That's a big step as over exposure to sunlight typically induces seizures in me. I certainly paid for it later, but I'm glad I got to be out for at least a little bit.

The seizure activity in the month of August was emotionally and physically exhausting and probably one of the reasons that was not a good month for me. For those who are not aware, I was diagnosed with focal epilepsy earlier this year and have been struggling with seizure control for the last 9 months. Working full time and battling cognitive and absentee seizures has been a battle that I did not prepare adequately for. This is like the mile 20 point of the marathon where you run into that brick wall and literally feel like moving is next to impossible. Yet, like in marathon's, eventually you find your stride and hit your second wind and force yourself to move forward. It was at my last oncology follow up that I found the wind in my sails to push me forward and get me back on track. As I sat in the waiting room, nervously waiting to be called back to find out my MRI results and continued plan, I saw a sign hanging up at the receptionists desk reading "So far you have survived 100% of your worst days, you're doing GREAT". I can't tell you how much I needed to hear that and I really almost started crying in the waiting room of Southwest Cancer Center (thank goodness I didn't). The day only got better for me because when I met with my oncologist she informed me that my MRI looked really good and that she would see me in another 2 months for a follow up and MRI. Waiting on MRI results is probably the worst feeling in the world and in the cancer community we call those days Scanxiety days.

I also spent the month of August nervous about finding a new neurologist, but was able to locate a provider in the Amarillo area who accepted my insurance. After my past experiences with neurology locally, I was feeling down about the situation with my seizures and really worried that I wouldn't be able to find someone to help me sort the situation out. Since May, my seizure medication has pretty much been becoming less effective. When my seizure frequency started increasing and the bouts of nausea and headaches returned, I became nervous that the tumor was back. After getting my MRI results back as good, I knew the issue was that of ineffective medication and NOT tumor re-growth; much to my relief.

Last night, my aunt and I made the trek to Amarillo to meet with the neurologist earlier this morning. The visit turned out to be much better than I anticipated and for the first time, I walked out of the neurologist office not feeling frustrated about my current situation. I learned more in a few hours than I did in 6 months dealing with my previous neurologist. On top of that, my new neurologist flat out told me I was wasting too much money on medications that were not effective for me and stated that we will get me off the Dilantin as soon as possible. Weaning of Dilantin is a complicated matter because I cannot simply stop taking the medication. Since I am still having seizures, trying to wean off Dilantin would almost certainly result in an increase in seizure activity and thus have an adverse effect on my health. Instead, my new neurologist explained that we needed to slowly work my keppra medication up to the max dosage and then re-evaluate my seizure activity to determine the next course. She explained to me that if I experienced unwanted or severe side effects with the Keppra dose change, I was to notify her office so that we could work back down to a lower dose and change the dilantin for another seizure medication. I was given a specific set of diet directions to follow and a "seizure diary" to keep track of my episodes and medication changes.

I also received answers to the one question that I have been asking about for several months now....When can I run?!? The answer was simple and straight forward. When you have gone 6 months without a seizure, you can resume sport activities. While, this was almost a little disheartening, I am happy to FINALLY have a time frame to know when I can resume the sport I love. Unfortunately, I am not allowed to have ANY alcohol until I go 6 months seizure free as well, so back to the basics. I CAN, however, have my one cup of morning joe and as long as I limit the caffeine; I can have an occasional pumpkin spice latte (hey OH!). You have to take the bad with the good and just take it one day at a time, so I'll take those small victories and run with them.

Namaste, folks!

Goodbye Summer

Goodness! I blinked and it was August.

I have had some complications over the past month that currently in the process of getting sorted out. Don't worry! I'm still in Remission and doing better this week, but hit a few road blocks over the past two weeks. In the month of July I had two unplanned trips to the EC when concerns arose that I may have Stevens-Johnson's Disease or Hypersensitivity Syndrome as a result of my Dilantin. Unfortunately those two trips to the EC yielded no answers and only more frustrations and now I am in the process of finding a new neurologist. To be frank, it has been a long time coming as I have been less than pleased with the group of neurologists I have been seeing at TTU Physicians. Now I understand what my patient's are going through when dealing with this department and let me tell you, it is an absolute mess. On top of that, I am learning from other doctor's offices that the frustrations are carried over into their departments as well. I am just happy to be able to put that poor experience behind me and move forward to a new doctor who will help me to return to a higher quality of life with less complaints. What concerns me the most is those patient's who do not have a means to access other health care providers and do not have the ability to travel out of town to seek the appropriate care they need. I hope improvements are made in the very near future because I couldn't imagine care like being considered a standard or acceptable to ANYONE.

On a more positive note. I am currently vacationing with my family in Dillon, Colorado. We will be here through the end of the week and I am enjoying getting away from the Texas heat. We drove up to Las Vegas, New Mexico on Friday and stayed at the Historic Plaza hotel in downtown. It was a nice hotel, but they had a lot of issues with overbooking and even messed up our reservation. Thankfully they corrected the issue and comped us one room, but that didn't keep us from having to sleep two people to a full size bed.

Saturday morning, we woke up and headed out to Denver, Colorado to meet up with Jeramy's cousin Zach and another friend of my parents. We ended up eating at a delicious joint downtown called Steuben's, which was fantastic!!! I encountered my first moscow mule beverage and I'm hooked. We stayed downtown at the Embassy Suites and had a fantastic stay, with the exception of Sunday morning when someone burned their toast at breakfast and set off the hotel smoke detector's which resulted in the entire hotel having to be evacuated.

Sunday we met up with Zach for lunch and then hit the road to Dillon. We checked in to our 3 bedroom townhouse only to discover someone had left their clothes and cooler in the house and it didn't look as if they had left it accidentally. As it turns out, a gentlemen who had been participating in the Regatta on Lake Dillon was under the impression that he still had the house reserved for one more night, so when he showed up later that evening and rang the doorbell, we had to call the reservation office to get things sorted out. It turned out that the management company had messed up his reservation and they had to find him another house for the remainder of his stay.

Monday we went down and explored the Dillon Marina and did a bit of shopping at the Outlets at Silverthorne. We did some additional grocery shopping to carry us through the week and then called it an evening and spent some time in the hot tub. We did a lot of walking activity and amazingly I did very well with very little issue of not feeling well. It felt really good to get out and breathe fresh air and get some sun. Mom was almost bedridden most of the day as she encountered a nasty bout of Altitude Sickness, but she was able to get out later in the afternoon and explore the city with Jeramy and I.

Today I woke up and did some yoga and then Jeramy, mom and myself ventured over to the city of Frisco Marina and Jeramy and I kayaked on Lake Dillon. We also went to explore the city center, which was full of cute shops and fun places to explore. I was a little nervous how the day was going to go, but it ended up being a total success and I felt great the whole time we were out.

Jeramy will be leaving to return back home tomorrow and I will stay with my parents for the remainder of the week and return home this weekend. There are so many little cities to visit and while I have been to quite a few of them, I am eager to explore some of the ones I have not been able to spend much time at in the past. Being up in the mountains makes me miss living in Colorado and I am happy to have the opportunity to visit frequently to see family and old friends.

NAMASTE Friends!

Continuing the Journey

Well,

Here we are July and it has come along faster than I anticipated it would. Being back at work has helped to pass time significantly and so I find that I am more occupied in my daily routine with less time to update my blog. That is not a bad problem to have at this point in time.

I continue to experience good days and bad days, although I feel like my good days are continuing to outnumber my bad days. A lot of it depends on how active I am for that day. The more active I am, the less well I feel (unfortunately). I now know the reason behind this is because my seizure activity is still not completely under control. Most days I experience significant fatigue and sometimes it is so overwhelming that I have to go lay down during lunch and take a power nap. I go back to the neurologist in August for another seizure medication adjustment and hopefully I can get to the point where I can tolerate being outside without feeling crummy within a matter of minutes (football season is coming up).

I recently visited the oncologist and received another positive MRI report so the plan is to return again in 2 months for another MRI and follow up and then we will reduce visits and MRIs to once every 3 months for the next year. I do not have to do Chemotherapy anymore (and I won't be doing it again anyway). Recently I have been focusing on changing my diet to include a very limited selection of items and avoiding certain food items that contain items that increase tumor growth factors and seizure activity. It has been challenging, especially working in a Physical Therapy Clinic where our patient's bring us cookies and sweets and donuts on a regular basis. Some days are easier than others, but I keep waking up each day and focusing on the foods I'm putting in my body.

The diet severely limits artificial sugars and food flavorings, (i.e. Dextrose, MSG, Aspertame, etc) and eating 95% plant based product and 5% or less meats and dairy. This ain't easy folks, but everything I'm reading on diet from a recovery standpoint promotes this and it is especially important in brain health and disease prevention.

I continue to participate in Yoga activities and I have made incredible gains in my yoga journey over the past months. I am excited to be able to take on a more active practice in the future and maybe take on some more challenging poses that currently I am unable to do because of low tolerance to increased ICP. I have learned so much over these past months and even with that knowledge, it is amazing to me how I still have so much more to learn on health and wellness. I am happy to be going through this journey, because it is something I can carry over to my client population.

Return Journey Home

We are finally home!

Jeramy is happy to be back as he has spent the last few days feeling very sore and painful from the excessive amounts of bone marrow that have been proliferating in his system. Our trip home required wheelchair assistance as Jeramy was very limited on the distances he could walk. We had planned to go out to dinner last night to celebrate, but he was in so much discomfort we took the advice of the hotel concierge and ordered in from a local Chinese restaurant. We were very pleased with the food and the suggestion and spent the evening laid up in bed watching movies.

We found out that the bone marrow donation had been a total success and Jeramy had actually exceeded the required amount of stem cells needed for the transplant (this is good news for the patient and for us).

This morning I packed up most of our stuff and we headed out. The flight was very uncomfortable for Jeramy with turbulence and bumps, but fortunately we were bumped to first class and so it made the trip a little more easy to tolerate.

I also received news back yesterday that I have been diagnosed with focal epilepsy and that I will likely require additional medication changes in the future. This was actually relieving news for me as I have been struggling with why I can't progress my activity tolerance and now I finally have some answers. I brought this information to Dr. Baronia's attention and he assured me that EEG changes are common and it takes time for those to adjust. I trust him completely and he still feels confident that things will improve later so that made me feel much better. In the meantime I will be able to continue with yoga activities, but I will have to slow my pace significantly and listen to what my body is telling me as my symptoms seem to correlate specifically with increased physical stress. I think the neurologist feels that I am still experiencing seizure activity, but that my large seizure activity is better controlled now. I am coming to terms with the fact that it may be at least a year if not longer before I am able to return to my favorite activity of running.

All in all, I feel that this past 4 days has been very successful and very eventful. I am looking forward to what the future holds and I will be greeting each day with a new respect for life.

Bone Marrow Update

Hello everyone!

This is the first post from our bone marrow experience in Dallas. We have been in Dallas since Friday, but we have been out and about celebrating Jeramy's 35th birthday, so I have not had an opportunity to update my blog on this experience.

Friday night we went out with Kyle, April and other friends to Top Golf The Colony. It was a very pleasant experience and we had a very enjoyable time catching up with friends and touching up my golfing skills (or lack there of). I still managed to get 3rd place out of the 9 of us :).

Saturday we went to brunch at Whiskey Cake. It was probably one of the best places we've eaten in terms of restaurants. I will plan to return there. We then did a little shopping over at Academy before we took the DART rail down from Plano to Uptown and decided to hop on the free trolley to traverse the area to see about finding a location to watch the Belmont Stakes race. We stopped by McKinney Avenue Tavern (or MATs) that is owned by Big Al Mac from the Kidd Kraddick radio show. It was quite possibly the worst experience we had ever had, so we took our business across the street where we were treated kindly and were glad to spend our money. That waitress probably received more tip from us than the other waitress working on the frat party across the street (I've bartended before and I know how Frat parties don't tip). Thankfully we were able to partake in watching the race with no interruptions and great seating and delicious food. It ended up being a much better time than it started out as. Our time out was limited due to Jeramy experiencing side effects from the Filagrastim injections he has been receiving for the past few days, which cause him to experience bone pain, muscle aches and fatigue due to over proliferation of stem cells in his bone marrow. It is funny because now I am on the other side of it, whereas just a few months ago I was the one who required constant supervision, etc.

Today we woke up early and Kyle cooked breakfast for us before we went down to Shops At Legacy and did some shopping and then finished off with lunch at Razoo's. We went and saw the movie Entourage and then Kyle dropped us off at the hotel on his way back to Rockwall. The remainder of the evening will involve room service and movies since both Jeramy and I are incredibly fatigued from all the weekend activities and need to spend some time recovering before we start up with the next phase. My next blog update will likely happen Tuesday or Wednesday because I am not sure what to expect the next few days. Thank you to everyone who has been super supportive of Jeramy and we are so excited to Be the Match for someone in need. This could be the life saving measure for someone and I am so incredibly grateful that I get to be a part of this experience.

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!

High Spirits on the High Plains

I'm gliding on an excellent emotional high today after a weekend of emotional downs and worry.

Friday was my 3 month follow up MRI and the process took much longer than it has in the past. I remember lying in the machine and thinking, gosh, this is taking forever. For those of you who have had MRIs before, you know it is not a quick process; but I have always been in and out within half an hour. This time it took almost a full hour before I returned to the waiting room to go home with my mom. I didn't think much about it, until the next day when Dr. Baronia texted me asking when a good time would be for him to call me and discuss my results.

My heart almost stopped. It is not typical for a Physician to get back to you that quickly regarding an MRI and if they do, the news is usually unfavorable....so I did the most rational thing possible and went to the darkest place of mind to explore the options available if the MRI results were not good. Saturday came and went and I did not receive a phone call, so I began to assume that things were not that bad because if they had been, he would have called. I spent Saturday and Sunday stressing to no end worrying about how I was going to react when Dr. Baronia called to tell me the bad news.

This morning I walked around treating my patient's with my cell phone clutched for dear life in my hand and shifting occasionally to my pocket. It was about 12pm when my phone rang and I saw that it was Dr. Baronia. I took a huge breath and answered the phone.

Much to my relief the news was good and honestly, better than just good. Dr. Baronia told me he felt my MRI results were still stable with no progression, but that if we look at the bigger picture and compare my imaging results from last year to this year with all my MRIs; there is noticeable improvement. I violated my running restrictions to sprint out of the office and celebrate (sorry Dr. Baronia).

He still mentioned that we continue to see some increased signal intensity on the MRI, but he is not sure if it is residual tumor or residual from treatment so he will use my next MRI in July to decide whether or not that is the case. The positive news was just so wonderful that I honestly feel so relaxed at the moment. In fact, I'm exhausted because I am coming off an emotional roller coaster that was so up and down it made every muscle in my body tense and I couldn't relax out of it.

As my recovery continues, I am now up to working about 5-6 hours a day and look forward to returning back to work full time on the 20th of April. Only 3 more rounds of Chemo to go and then I will hopefully be done with treatments. My hair is growing crazy fast and you almost can't see my scar anymore! I have been doing yoga therapy weekly and can feel the strength I am gaining in my muscles. I feel like running is definitely in my future and September can't get here fast enough so I can receive clearance to return to running. I will be continuing with yoga for a while as I have found it to be incredibly challenging physically and have started to gain muscle mass back. My yoga instructor Lindsay Kerr has also introduced me into some Essential Oils, which I have been using to help improve my sleep at night.  I am including her information on this page

Updates from West Texas

I am officially 3 rounds down in my 6 rounds of chemotherapy. This new nausea medication worked surprisingly well and allowed for me to function on Friday and Saturday without being completely confined to bed. I will admit that I still had my nausea episodes, but I felt that they were better controlled this time around and I was able to run errands on Saturday and work on Friday this time. This is very comforting because I wasn't sure what to think about the medication since I only take it on day 1-3 of chemo and my nausea doesn't usually become an issue until day 4.

I am due for a 3 month MRI at the end of next week (First of April). My neurosurgeon hopes this next MRI provides a little more information on the progress of my healing. I am feeling better, so I am hoping that the MRI reflects that healing as well, but I am cautious because I am still undergoing chemotherapy and I have had several oncologists mention that radiation/chemotherapy can cause areas of increased signal intensity on imaging. I almost expect there to be continued signal intensity in the area of my right frontal lobe until Chemotherapy is complete and I have gone several months without any toxins in my body. I also have enough medical knowledge to know that MRI's are not always an accurate tool and it is challenging to rely on them as the sole diagnostic indicator. Clinical correlation is equally relevant and as someone who feels to be improving, I am not sure that my imaging can truly reflect the improvements I have made over the past few months.

I have been spending time on the weekends and afternoons (when it isn't blowing dust) working in the garden and flower beds. We have planted bell peppers, jalapeños, and garlic in pots outside and then have our hydroponic garden indoors. The hydroponic garden is overflowing with dill, basil, mint, chives, cilantro and several other herbs for cooking. We are likely going to plant some tomatoes in our large pots and then maybe we can grow a few more veggies in pots this year. I plan to hang some from the patio and so I am excited to see how it turns out. The peach tree continues to do well. It has begun flowering (which also puts it at risk). It is typical for us to get a late season freeze, so we will have to take preparedness actions to keep the tree alive if it does freeze again. I am hoping not because last year the tree bore peaches and we'd like for that to be the case this year as well. I almost regret living so close to cotton farmers because they make it very challenging to keep any vegetation alive when they spray their pesticides. It is the reason we decided not to put in a bee box and harvest our own honey. Our neighbor mentioned that the cotton farmers are liable if any vegetation is killed off as the result of their sprays, so we have been looking and trying to research into what to look for when the plants die. Out of all the plants we put in last year, 3 of our Indian Hawthorne bushes died, but the rest of our plants seem to be doing well. The dessert willows are late season bloomers so I don't expect to see much from them until closer to summer.

I have been doing Yoga once a week with an instructor, Lindsay Kerr (who is fabulous by the way). I have to admit that at first I was a little skeptical on what to think because I've tried yoga before and never saw any long term success with it (I think I never had much of an open mind to begin with). Turns out, I was wrong :). The most amazing aspect of yoga workouts for me is the fact that I can achieve that same "runner's high" utilizing yoga techniques as I do when I'm running, and that has been something I have been desperately craving for the past 3 months. It is a mentally and physically challenging program that also provides the same stress relief feelings that I get when I run. This has been huge for me. So much so that I had an epiphany with it awhile back. My ultimate goal is to return to running, because that is what I enjoy doing more than anything. I do however, feel a sense of relief because if for some reason I am never able to return to running, I can continue with yoga and get the same benefits. It is like when you have a craving for a food, that can only be satisfied by eating the food; this is how I feel about running and now, thankfully, yoga. This has brought me piece of mind that I have not had for some time. I was almost confident that there was no other way to experience that same "runner's high" in any other sport or exercise; but I have been proven wrong. I will make time in my schedule from here on out to do yoga as regularly as I can.

A life changed

I returned to my oncologist's office today for my monthly follow up and received some encouraging news. I have completed 2 rounds of chemotherapy and start my 3rd round next week. The nausea that I experience day 3/4-6 is often extreme and prevents me from being able to get out of bed and do much. I assumed that this was just going to be an unfortunate side effect of the treatment because none of the nausea prescriptions have worked well for me so far; but Dr. Radhi insisted that we get the nausea under better control because I shouldn't have to be miserable in bed all day.

We tried phenegren (I can't handle it). Then we tried compazine (I had severe anxiety as a side effect and refuse to take it again. Then we tried marinol, which did absolutely nothing but make me hungry. Now we are going to try a combination of zofran and aprepitant. The aprepitant works by blocking substance P from the brain so it is a way to prevent nausea (not stop nausea that already exists). The plan is I take my zofran in combination with the aprepitant and it will hopefully prevent me from experiencing extreme nausea. I spoke with a friend who also happens to be an oncology nurse and she mentioned that they have been having good success with it. Side effects are minimal and I'm all for that. Prayers that maybe this round will be a little easier.

I do have to have weekly blood draws now because my platelet levels were a little low, but nothing that was concerning or requires us to stop treatment. I'm very happy to know that Dr. Rahdi thinks we can get my nausea under control so that I can function and work during the week and feel I'm in great hands.

I continue to feel better and have more energy each day, so I am very happy to continue to feel like I'm on still on the road to recovery. Baby steps are starting to feel like toddler steps and I think we've found a good balance on my seizure meds (for now) to help me get through the day without significant visual disturbances. I was able to assist with the Guns Up Volleyball Club Texas Tumbleweed Tournament this past weekend and I was amazed at my ability to do more than I honestly expected that I would have been able to.

Now, I have to vent some frustration (not because I am angry with anyone, but because I am angry at a situation). To my conservative friends, I will warn you in advance, that you will not agree with my opinions that I am presenting. I urge you to keep an open mind and hope that you will read this anyway as it is always important to weigh both sides when forming your own opinions (many of you may not realize this, but I read through your thoughts thoroughly and consider your ideas before I comment on your posts because I respect you as an individual and more importantly as my FRIEND). I would never stop being your friend just because we share differing opinions on many subjects. I have taught myself to enter into debate with removed emotions, because otherwise there is no such thing as a constructive discussion and I want to be challenged, not belittled. It is a tough thing to do because it is easier to respond with emotion than it is with rationality at times.

I recently read a blog article that came across my newsfeed on the Affordable Care Act, or "Obamacare" as so many people in my area choose to call it. It listed statistics recently released by an independent research company providing information that over 9 million Americans have signed up for healthcare since the implementation of the ACA. I then made the mistake of scrolling down to read the comments at the end of the article (I did not know these people, but they made some comments that struck a note with me). One comment in particular made a lengthy argument about how they had lost their health insurance because of the implementation of the ACA and had to switch to a plan that included increased premiums and deductibles and higher monthly payments for their family to be covered. While I recognize that this is an unfortunate downside of some of the aspects of the ACA, I was taken aback because this family still had the opportunity to afford to purchase insurance and as someone who has seen and experienced some of the unfortunate aspects of insurance with cancer treatment, I felt they were blowing the situation way out of context. They made the comment that it was incredibly UNFAIR that this happened to them.

Here is the thing....yes, you have to pay more, yes your premiums increased, yes it is unfair, but it could be WORSE. The fact of the matter is that out of all the people who lost insurance coverage from the ACA, it accounts for less than 1% of total insured coverage in the United States. That is not even statistically significant, not to mention that these folks still had the ability to receive insurance from another company.

I know that many of my friends have lost their coverage as a result of the ACA as it had a bigger impact on those who purchased private insurance plans than those who work for a larger business and had an employer based plan. While I sympathize for you, I do not empathize for you and here is why.

Prior to the ACA, at some point I would likely be dropped from my insurance plan because I "cost too much" to insure. As someone who now qualifies as having a pre-existing and chronic condition, I would not have been able to get health insurance after that, which means my cancer treatments would soon become out of pocket expenses. Trust me when I say, that is not cheap. To discriminate against someone because of illness is an atrocity I cannot put into words and I have had patient's in the past who have gone through this very thing. While I will thankfully never have to experience this thanks to recent changes in healthcare law, it gives me an understanding on the issue that many don't take into account. These patient's have been forced into the indigent program where the taxpayers pick up the bill. Unacceptable. Period.

Until the next post!

The Marathon Continues

This week I have had some friends who are going through some emotional and physical struggles. I have many unspoken prayer requests, so prayer warriors please come together for those who are battling elements out of their comfort zone and don't know quite where to go from here. It has brought about some thoughts in me that I have been considering for a while and I felt the need to put them in words because everyone needs guidance sometimes.

I have gone through an emotional evolution over the last 6 months that I didn't think was humanly possible. Out of my struggles, I have gathered a few thoughts that have really helped me to keep pushing forward even when I want to fall down. I've learned more about myself emotionally in the last 6 months than I knew or gathered over the past 30 years.

I have learned that people don't know what to say in these situations and so they stretch to find words of hope and wisdom to share. It is a bit of a conundrum because the message to be conveyed is meant to be one of positivity and hope, but sometimes it strikes an emotional cord so deep that it brings about great sorrow.

I've learned to accept that in general, people mean well but they often struggle to share the appropriate response. They mean to be caring, loving and supporting, but sometimes it feels as though they are now treating you differently. Suddenly you appear fragile, yet they characterize you as strong for going through this fight.

I've learned that yes, I am strong, but most days I am very weak and emotionally I cannot hold it together all the time. Those who are with me most often know that there are days when no words can be of comfort and even hugs don't help.

I've learned that even mental toughness cannot over come this struggle. In running, you know that at some point, physically, you will lose the will to continue; but mentally you can learn to keep pushing because your body can do more than your mind will lead you to believe. In chemotherapy, you don't have a choice. You swallow the pill or receive the infusion because the alternative is so awful you don't want to even consider it. You continue to do so even though it makes you physically ill to the point where you can't even get out of bed. There is no such thing as mental toughness in cancer treatment, only forced repetition.

I've learned that God will absolutely give you more than you can handle because he recognizes that the only way to move forward is by "resetting" emotionally and that in these instances you are not in control. Sometimes you have to lose it to find it again and he recognizes that need in everyone.

I've learned to be grateful for all emotional experiences (good and bad). It brings about an appreciation of humanity in me that I did not know existed.

I've learned that people in bad situations will not willingly ask for help because they do not want to appear weak. I have thus learned that instead of asking "If you need anything" my words have changed to "what can I do to help". Most often the response I receive is pray, so I have also learned that sometimes dropping in or checking in will present an opportunity for both parties that would have gone unrecognized with one message of "let me know".

I've learned that you will lose friendships because people are most often afraid of what they do not understand and rather than invest emotionally, it is much easier to back away.

I have learned to forgive those who choose to distance themselves because I recognize that they do not want to cause harm and they are making decisions based on the information they have available to them.

Most importantly, I've learned that no one truly understands what you are going through unless they have been there themselves and so finding friendships in others who are going through a similar experience is essential to recovery and emotional stability.

To my friends who are going through some hard times at the moment, just remember that no matter how bad it gets, you continue to put one foot in front of the other and press on. Maybe today was not a good day, but there is always tomorrow. Eventually all things will resolve, and even if it means you have to spend a large amount of time picking the pieces up off the floor and putting the puzzle back together; you will eventually complete the task.

Progress Continues

I visited the neurosurgeon this morning and received some GREAT news :). The neurosurgeon explained that my last MRI (which was done at the beginning of January) shows an area of increased uptake along the medial and inferior areas of the right side of my brain. Dr. Baronia explained that he is not concerned with this just yet as this has been present in my last 3-4 MRIs and has been considered stable. He stated that it is impossible to tell whether it is tumor or the treatment that is causing this, but the good news is, it's not changing. He continued to emphasize that I will need monthly MRIs to follow this and see how things continue. He explained that if it was tumor, we likely would not be doing surgery because it is in the fiber tracks of the brain and I would be left with permanent disability if they attempted to remove it. So for now, we are watching and waiting for the chemotherapy to do its thing and see how future MRIs present. Since there has been no change in the imaging since we started this process, we are assuming the slight increased uptake is likely residual from surgery and treatment (this is not the great news, it is just good news on stable results and no progression).

The GREAT news is that I have been cleared to begin a light exercise regimen and I can have 1-2 glasses of wine a week (as long as it is in moderation). Dr. Baronia explained that we would assess returning to running after my 1 year anniversary of surgery, but in the mean time I can start working into an exercise routine over the next month. He advised me to be cautious and go slow and so I will likely start light weights at home with the husband and maybe get on my bike trainer a couple of times a week to get my heart rate elevated. He told me to stop taking elevators as well and use the stairs.

I started my first round of 6 chemotherapy sessions last month and after about day 3 the nausea was significant. It got to the point where the zofran wouldn't do any good during the day, even with continued doses. I go back to see my oncologist tomorrow and will discuss additional nausea medication options during the day to help get me through. I manage at night pretty well with my attivan, as it controls my nausea better than the zofran does after day 3. I'm learning my attivan serves  multiple purposes for me other than anti-anxiety, and sleep. I've received several suggestions for the nausea medication marino, which is supposed to be very effective at treating nausea related to chemotherapy.

Next Tuesday I will also visit the neurologist to determine the course of medication change with the dilantin over the next few months. They really want me off this medication and I will be ok with the change because the dilantin makes me sleepy and I'd like to be able to go through the day without being tired after taking my medication.

Overall Dr. Baronia was very pleased with my progress and happy with the results thus far. I will go back to see him in 3 months for continued follow up and will likely require another MRI before that time. I'll be due for another MRI in April and I think we will have a more honest picture of progress at that time with the area of increased signal intensity. In the mean time, I am happy to have continued improvement in my quality of life and I look forward to a short vacation here at the end of February.

Here We Go Again

We met with the hema-oncologist today and my scans continue to look good, with no tumor progression and very stable imaging results. I have been able to return to part time status at work and continue with patient care. Recovery continues to be slow, but I am happy to be at a point where I can function a little more normally. My seizure meds are still a little jicky so I will have to work with the neurology team to get my meds properly adjusted. Currently I am taking 2g of Keppra daily and they have dropped me down to 200 mg of dilantin (I was having trouble with the 300 mg). I suspect they will want to up my keppra dose and wean me off the dilantin since they didn't want me on dilantin in the first place.

The next course will be 6 more rounds of chemotherapy. I will be on the full dose of temodar every 28 days orally. I will take chemo 5 days a week in a pill form and then I will rest 23 days. We will do this for 6 months and then we re-evaluate and see what things look like. I start chemo again on Monday (A little sooner than I anticipated). I'm a little nervous about this next chemo round as I will be on a much heavier dose, so I'm not sure how I'm going to respond. The suggestion was made to take the chemo at night before I go to bed so that I sleep through the potential side effects, but it is a wait and see thing. I did very well with the last round of chemo, but I was also in much better shape and feeling better physically. I have lost 8 lbs since this process started. I would say that is awesome, but the weight that has come off has been muscle mass and I am now down to 147 lbs.  I am hoping that in a month or so, I can receive clearance from the neurosurgeon to start a light strength training program. I miss exercise desperately and I am really looking forward to getting back into a weekly routine to build muscle strength and more energy. The good news is that I am getting some good walking in daily (although not much). I'm usually able to get about a mile or so in of walking at work so it certainly better than when I was bedridden for two weeks, but I crave movement and I'm beginning to find that just walking is not satisfying enough, even though I can't really tolerate much more than 4 hours of work in a day without being pretty tired.

Tomorrow my mom will be returning to Austin for a few weeks and Jeramy and I will work to get back into a routine with just the two of us. We have been able to work out a schedule so that Jeramy can take me to work and pick me up to take me home after my half day shift. It will be a good change, but I am sad to see my mom go because she has been such an awesome force in my life over the past few months staying up here to take care of me. I've gotten so used to her being here that It is very emotional to let her go. This is a challenge that you cannot anticipate when you are so far away from your family. I've been incredibly blessed to have family and friends that have been here to walk me through this process and help me when I am in need.