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.