Home Sweet Home

Hello everyone!

I am happy to report that I am home and resting comfortably after another two day hospital stay.

Tuesday night, I had just completed a 1.5 mile jog and was resting on the couch while dinner was being prepared. As I was laying down, I felt a very funny sensation on the left side of my body and realized I couldn't move my left arm or left leg. I cried out for my mom to help me and fell back onto the couch and went into a seizure. This seizure was completely different then the first one. I remember pretty much the entire seizure from start to finish and never lost consciousness. The seizure only lasted about a minute or so but being trapped in my head it felt like it lasted forever. I can remember seeing my left arm extended out next to me and I could feel my left foot cramping, which was severely painful, and my thought process was that I was going to most likely dislocate my shoulder. I experienced a deafening noise in both ears that sounded like electricity running through wires (like if you have ever walked next to a transformer and heard the electrical buzz). Towards the end of the seizure I lost my hearing and really had a sort of "out of body experience" as I heard someone hyperventilating and it took a few seconds for me to realize that it was ME breathing that way. The entire time I was seizing I did not have the ability to speak and so I had no way to communicate with anyone around me, even though all I wanted to do was yell and scream because it was so painful. I wish I had passed out during this seizure because it was the most terrifying experience of my life. Once I regained the ability to speak, the first words out of my mouth were "Call 9-1-1". My speech was slurred for a few minutes, but quickly returned, but I never experienced a posttictal state of confusion or disorientation. I knew what day it was and where I was and what happened immediately after the conclusion of the seizure.

I arrived at the Emergency room shortly after 7pm and was promptly admitted and moved up to the hematology/oncology floor. I thought I would only have to stay for 1 day, but it turned into a two day event as I underwent blood work and MRIs and CT Scans and an EEG. Everything came back good, but there was some abnormality noted in my EEG so the decision was made to increase my Keppra dosage to 750 mg, twice daily. They wanted me to stay an extra night and meet with the neurologist, but my neurosurgeon Dr. Baronia told them I could go home if I wanted. I elected to forgo the neurology consult since my scans looked good and go home so I can sleep in my own bed (I can always meet with the neurologist later).

The good news with all of this is I was still able to receive my chemotherapy and radiation without interruption, so I don't have to tack additional days on to my treatment. Tomorrow will be the end of week two of chemotherapy and radiation and I will have exactly one month left of treatment. The bad news is that with this new onset seizure, my ability to drive has been delayed and my 6 months starts over (I will be driving my car to smash the radiation mask, so my compliance will have to take a back seat for a brief moment). Onward and upward my friends! Have a wonderful Halloween!

Titanium

So, initially I was going to wait until I completed my first week of chemotherapy and radiation to post again, but I hit a milestone this evening that I felt I couldn't wait to share with everyone. Currently I am on day 3 of 5 of my first week of chemotherapy and radiation. I have experienced very little side effects and I have been able to work part time as well. The only side effect I experienced was Monday night, which I attribute to my antiemetic Zofran. I have not had an episode of nausea yet and I certainly hope that streak continues. The team at Southwest Cancer Center (SWCC) was correct when they told me that this type of chemotherapy is very well tolerated. I have been juicing in our vitamix blender every day and I probably drink about 3-4 8 oz. glasses of green juice a day as well as drinking more water than I ever have in my life. I am in the bathroom every 5 minutes to pee at this point, but if it helps my body wash these toxic chemicals through easier, then I'll deal with it.

The big news that I felt like sharing is that I ran a mile on the treadmill this evening after I got home from work. It certainly wasn't my best time and I took it pretty easy, but I was amazed at how well my body remembered how to run and how good I felt after I was finished. I have been battling a cold for the past week and so it actually helped to clear out my airways and make it easier to breathe. Who needs mucinex when you have exercise?!? Everyone at the doctor's office has told me that exercise will help combat the fatigue I will begin to experience the further along we get into radiation treatments.

I fully anticipate running again tomorrow morning and hope to be able to do so most days of the week. I certainly hope that I feel as good as I do now during the next 5 weeks of treatment.

Marathon training commences!

I have been back to work this week, which has been a very refreshing change for me. I have missed being in the clinic and having a distraction to help me through this process. I was very happy to see all my co-workers, who I have missed very much and even ran into a few former patient's who I had been thinking about during my time off.

Today was also my first day of radiation and my second experience in the mask was much more pleasant (for lack of a better word) than the first. I also received a lot more reassurance from the radiology technicians this treatment which helped ease some of my fears about the potential side effects of treatment. They work with each patient every day so they encounter first hand what each individual goes through and provided a very honest perspective of what most patient's encounter during radiation treatment. I am choosing to look at this like I'm training for a marathon, there will be many miles, many hills, many days where I won't feel like continuing, but in the long run it will all pay off and I will be rewarded for my hard work and effort. I will be crossing another type of finish line at the end.

Monday I will begin my chemotherapy treatments, and I am feeling confident that I will not have as many side effects from this chemo compared to others based on my research. I spoke with the radiation technologist and she mentioned that a patient earlier this morning had reported some very slight nausea from the same chemo medication, but that she had also failed to take her nausea medications as prescribed. I have every intention on taking my medication as prescribed so that I can still function at a higher level without feeling like I'm going to have projectile vomit. My biggest risk will be from working around other people. The chemotherapy and radiation will all but deplete my immune system and so I will need to be extra diligent about making sure I utilize good hand washing technique. I have also left clorox wipes on my work desk so that if people use my phone or the computer, they can wipe down the surfaces they've touched in my work station after. They have prescribed me an antibiotic that I will take 3 times a week to help counter infections, but I will also have to supplement with a probiotic because there are some negative side effects from having to be on an antibiotic so long. Basically I'll be a pill pusher for the next 6 weeks. This will be the most medication I have ever taken in my entire life. One way we will counter this is by having me wear a mask at work so that I am not exposed to potentially harmful bacteria and don't contract the flu from anyone. I'm not allowed to get a flu shot until after the conclusion of my radiation and chemotherapy.

On a positive note, I jogged last night for the first time since before the surgery. It was literally like I loped lightly for 150-300 feet, but it felt really good to pick up my pace and get moving. Small Victories are crucial to healing and I won't forget to pay close attention to those over the course of my 6 week marathon training.

1 day down, 29 to go. Let's do this. 

Tackling the Pyrenees

So I met with my second oncologist, Dr. Figeroa today. I learned that my tumor has caused a bit of controversy because there has been some disagreement on the diagnosis. Dr. Figeroa states that for the most part my tumor is a grade II Astrocytoma, but that there was an independent pathologist who presented my case as exhibiting characteristics of a grade III Astrocytoma. As a result, my pathology was sent off to the Mayo Clinic for further analysis and confirmation. The course of treatment will remain the same regardless of the diagnosis, so there hasn't been too much change there.

I went in this morning to get fitted for my radiation mask which will make even the most sane person crazy. The mask is a piece of plastic that is heated to 150 degrees and then removed to cool just long enough to be smashed over my face to allow for absolutely no movement of my head during radiation treatment. I'm not claustrophobic, but I had to talk myself down off a ledge this morning because I could feel my heart rate rising quickly and I wanted so badly to scream for someone to come take the mask off. It took about 5 minutes but I finally got my breathing under control and was able to "find my happy place". Thankfully I will only spend a max time of 15-30 minutes in that mask a day.

I was very happy to receive a release for returning to work because I am not the type of person to sit and wait and I'd like to maintain as much of a sense of normalcy during this process as I most possibly can. A lot of it will be dependent on my response to chemotherapy and radiation, but Dr. Figeroa was very optimistic about minimal side effects with the chemo. He informed me that this version of chemo is the only version available that can cross the blood brain barrier and so it is effective in treating brain tumors and certain brain cancers. He also informed me that it is very well tolerated (10 years ago I would have a much worse prognosis because chemotherapy was ineffective at treating my condition due to its inability to cross the blood brain barrier). I received a slew of prescriptions today and will require weekly blood draws to monitor my response to the chemotherapy and radiation. I will receive a very low dose of chemotherapy for 6 weeks while on radiation and then once radiation is completed, I will require an additional 6 months of chemotherapy alone to hopefully further stabilize my condition and improve my longevity. Along with the chemotherapy scans, I will require MRIs every 3 months for 2 years and then the frequency will be reduced after that time until the 5 year point. Once I make it to the 5 year mark I will most likely receive a clean bill of health. I have done  a lot of processing over the past few days and I am beginning to come to terms with my condition and recognize that this is just another hurdle to be cleared. I'm ready to fight the good fight and look forward to putting this behind me so I can move on with my life and get back to running marathons and triathlons.

A long road ahead

Apparently when you have a brain tumor, this gets you curb side service at the Southwest Cancer Center. I walked in, checked in and they were already ready for me before I finished my paperwork. They took me back and I met with some of my "team" and I feel good knowing I am in fantastic hands with this particular group of folks.

I met with my radiation oncologist Dr. Torres and found out that I will be receiving a combination of chemotherapy and radiation treatment over the next six weeks. This was a bit of a surprise to learn about because originally the plan was to most likely just have radiation every day for 6 weeks. I half expected this though from the studies that I read that were provided to me from my neurosurgeon Dr. Baronia.

Despite having this on the back of my mind, it does not make the news any easier to process. There are a million emotions running through my head and frankly it is going to take some time to adjust. I'm less than thrilled at the aspect of chemotherapy, but my chances of overall improved outcomes are significantly higher with it versus radiation alone. My doctor appointment schedule has gone from two appointments this week to 4 and I suspect that I will have an entire line of appointments laid out each day here pretty soon.

I am scheduled to meet with a counselor tomorrow morning and then I will go in for my radiation simulation test on Thursday morning and meet with the chemotherapy specialist (Dr. Figeroa) Thursday afternoon. Continued prayers and good vibes are much appreciated as I am in for a rough road over the next 6 weeks but I am bound and determined to beat the socks off this thing. I'll update again once I meet with the chemotherapy oncologist (if there is any new information). Thank you all who have provided kind words and meals to Jeramy and myself over the past few weeks. I have not been able to say personal thank you's as much as I wish I could, but know that we are so incredibly grateful to have you all in our lives.

Finding Strength in Weakness

There isn't much to update everyone on at this point, but the concept of writing holds a therapeutic aspect for me that I am compelled to capitalize on. I met with my neurosurgeon today and he was pleasantly surprised to see how successful my recovery has been within a two week period (I think he expected me to present with some residual neurological deficits, but alas, I have very few limitations at this point other than extreme fatigue with light activity (mostly as a result of being de-conditioned from surgery and some slight left sided weakness, which is resolving a little more each day. The staples finally came out and I am so happy for this, although I'm still not allowed to shower and soak my head for another 2 days. This has been the biggest source of agony for me to date and I am so looking forward to Thursday morning when I can finally scrub my fingers through my hair and enjoy the simple task of utilizing shampoo and conditioner to their full extent (It's the little things).

This weekend was for lack of a better word, rough. Friday started off poorly when my post-operative appointment was cancelled an hour before its scheduled time and I spent most of the day on an emotional roller coaster that consisted of more tears and tantrums than you ever thought possible in a 29 year old (I blame some of it on the fact that the surgery has left me in a heightened agitated state at times that has virtually obliterated my patience, ((not that I had much before)). I saw vast improvements in my mood upon the arrival of an autographed photograph from the one and only Kliff Kingsbury courtesy of my aunt Diane Mason as well as a massage from my Aunt Holly (who is the best massage therapist in town hands down) and a pedicure with Jeramy's Aunt Rachel and Uncle Jared.

Today I shocked my speech therapist with my overall recovery and progress with cognitive function as she informed me that I am the first patient she has ever seen recover as quickly as I have from brain surgery. I told her to get used to this type of progress, because I'm all about breaking records. Unfortunately, I did not receive running clearance this visit( I have to wait to see what my course of radiation treatment will be, but my neurosurgeon did tell me I could walk as much as I could tolerate without over doing it. I'm currently waiting for my husband to arrive home from work so that I can go on a walk this evening. I'm also optimistic that I will be able to return to work sooner than later at this point (even if it is just part time).

Physical Therapy has been far more challenging than I ever anticipated and I couldn't believe how worn out I was after attempting 6 squats. I go back for another day of PT and OT twice more this week and I am very excited at the thought of being able to progress my activity levels each time I attend.

Tomorrow I meet with Dr. Torres at the Southwest Cancer Center to see what the plan will be for radiation treatment. I have been reading several articles on the efficacy of treatment of low grade gliomas and was surprised to find that the research lies in favor of a mixture of radiation and chemotherapy, so we'll just have to see what they feel the best plan of action will be for me long term.  I know I will be requiring 6 weeks of at least one form of treatment to stabilize the tumor and prevent it from progressing into a more aggressive form.