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!