On July 12, 2017, I put my big girl pants on and boarded a plane to Chiang Mai, Thailand. I was so excited to venture across the world all by myself on a magical journey to volunteer at Elephant Nature Park (ENP). Prior to the trip, my insides were dancing a fancy jig, but my mother was extremely concerned about her post-surgical daughter going alone to South-East Asia during their rainy season. I assured her that I had no intention of sloshing around Thailand in my best Christian Louboutin shoes while attempting to hug and kiss every elephant in an underdeveloped, muddy hillside village. I am not sure if that made her feel better or worse, but I thought if the elephants can survive the Thailand rainy season then I could, too.

I booked a room in Chiang Mai near the city center for a few nights prior to volunteering with the elephants. I wanted to see the sights, visit temples, shop at the night market, and attempt to eat food in a foreign country without getting violently ill before taking a long bus ride to ENP. At the airport, I was assisted by an English-speaking woman who helped me board a shuttle to my hotel. The Thai speaking shuttle driver looked over the print out material that I had handed him with my hotel information, and the woman assured me that he knew the destination of my location.

After less than a 20-minute shuttle ride, the driver stopped on a quiet, narrow street. I had noticed there were rows and rows of long alleyways running perpendicular to the street we were driving on. In his best English sign language, he started looking at me then looking down one of the alleys while using a jerking motion with his neck in an effort to point with his forehead. He made that motion several times like a pecking hen. From what I was gathering, he wanted me to get out of the shuttle and walk the rest of the way to my hotel. If I was driving, that shuttle would most definitely fit through the narrow alleyway, but I was not willing to risk taking over the wheel. Eventually, I had to acknowledge what he was doing in fear he would accidentally smack his head on the driver side window. Hand motions would have been sufficient, but there was no way of communicating that to him without speaking loudly while over-enunciating each of my words in English as if that would help him understand me better.

I exited the shuttle with my luggage and started rolling my bags down a heavily cracked, pothole-filled, rocky side-street. I had no idea where the hell I was going, and it was not the most welcoming alleyway. There was not a hotel in site, no legible signs, nor an open gate. It was early in the day, but it was also very desolate. As I kept walking, I noticed more and more alleys off of alleys, and I was trekking quite a distance with this feeling of getting nowhere near my hotel.

After passing many alleys, I did see a woman with a food cart who was cooking and selling meat-on-a-stick. At first, I thought she was a mirage, or a figment of my imagination. Why would a woman be in an alley, off an alley, off an alley selling cooked skewers of I don’t know what, and who would be buying her impaled carcasses? No one was around….not one other person. As I was walking by her, we shared a smile and a friendly nod. I was looking as touristy as a tourist could be, off-roading my large suitcase and carry-on bag down a desolate alley.

I made it down the road about 50 yards before I heard the woman yelling. I turned around and saw she was waving for me to come back towards her. I started mentally preparing how I was going to tell this lady in my best Thai sign language that I was a vegan.

As I got closer, she began pointing her tongs towards a tall brick wall with a closed iron gate door. I continued strolling closer to her while ignoring her hand gestures. She walked out from behind her cart while doing her best interpretation of an aviation ground crew member using orange batons to guide a plane. I had no intention of walking in someone’s backyard or into a potential hell-hole. I remember getting nervous wondering if maybe she was part of a human trafficking operation abducting foreign women. For a split second I thought I might have to defend myself and knock out a 4’8” woman weighing somewhere around 90lbs. Once adjacent to each other, she gently took my arm, and with a big, bright smile she guided me to the iron gate while motioning for me to go inside.

I took a deep breath and turned the door knob unsure if it was time that I meet my maker. Once past the threshold, the imaginary carpet rolled out where I was greeted by the welcome wagon. I walked into a hidden gem with a koi pond, trickling waterfall, natural pool, Bohemian restaurant, comfortable room, and beautiful view of a temple. I was just where I was supposed to be, in paradise at Green Tiger Vegetarian Hotel, Chiang Mai, Thailand.

August 27, 2017

Where do I begin…..

I have been trying to get into a normal routine since my post-op surgery and recovery phase. I returned home on March 22, 2017, but I was still doing extensive home IV therapy treatment that lasted through the month of April. My determination to put the chordoma saga behind me has been very challenging. I stopped journaling because I wanted a break from thinking about having a chordoma. It has been a headache (literally). I have not wanted to place any focus or thought on how I got bushwhacked by a very uncommon spinal tumor. I have been full-force, dealing with it for the last year, and it is not over.

Part of getting my abnormally-normal life back meant returning to the dance class that I love so much. The last time I had danced was December 31, 2016, the day I found out about the skull based tumor compressing on my brain. I looked at my phone in the middle of class that Saturday, New Year’s Eve, and I saw a missed call from my doctor. Needless to say, I knew he was calling about the MRI results from the brain scan I had done the day prior. I walked out of dance class, made a few phone calls, cried a little, and my fight began.

In May I attempted to start dancing again. I attended one class, but became concerned about whirling and flipping around a pole with the possibility of landing on my head. Considering I am known for being a graceful, delicate flower, a slight mishap was not totally out of the question. I had lost 20lbs since surgery, I was anemic, weak, and utterly bummed out that my strength was not back to the way it was prior to my dance hiatus. I was not ready to include dancing in my daily regimen.

Up until January 1, 2017, I had never had anything occur in my life that senselessly knocked me on my ass for a long period of time. Roller derby knocked me on my ass many o’times, but that was to be expected. I was used to being able to bounce right back immediately after mishaps took place.

I disliked being down and was determined to get my freedom back, especially since I started to have constant, daily headaches that had me eating Tylenol and Ibuprofen as if they were the only items that I stocked in my cupboard. I felt trapped by my pain and weakness. I made the decision to get working on my bucket list instead. I started to think about not wanting to have any regrets, and I did not want to wait until it was too late to act on the things I aspired to do in this lifetime.

It was 4:29am on May 20, 2017, and I could not sleep. It just so happened, the night before I had the TV on while I was cooking dinner. National Geographic was airing an episode about Lek Chailert, the founder of Elephant Nature Park in Chiang Mai, Thailand. I was glued to the TV watching one of my heroes, Lek Chailert, share her life-story about opening an elephant sanctuary and rescuing elephants. She went against the village norm by being an independent woman and saving the lives of what the surrounding villagers used for profit. Elephants in captivity are a huge income source for entertainment, working, logging, and tourism. I will bypass the inhumane treatment part and how baby elephants have their spirits broken to be used in such ways. Lek has been very courageous to stand up for elephants and provide a safe-haven for many mistreated, abused, and gravely injured majestic creatures to live out their remaining years in a peaceful and safe environment.

National Geographic did a beautiful job capturing the loving bond shared between Lek and the elephants. It was obvious the elephants recognized her as someone very special, and it was heart-warming to see how affectionate the elephants were as if showing immense gratitude. Elephant Nature Park was undoubtedly on my bucket list of places to visit. Since I was unable to sleep that night, I opened my computer, and without putting too much thought into it I booked a 2-week trip to volunteer at Elephant Nature Park in Chiang Mai, Thailand.

I talked to my Mamma this afternoon, and she is concerned that I am in a “fragile” state of mind. Fragile? I found it extremely comical because at this point in my life I am far from ready to leap off a cliff. I just survived the most horribly painful skull base tumor removal with no deficits, I am back to work at the best hospital, I have the most amazing support system in the world, and I have returned to the best workout regimen ever. In 2010–2013, I was ready to crack. I hit the lowest of the lows and was in the most hopeless state of mind. Within that timeframe I was driving my crazy train right off the tracks. Those were some of the most trying years of my life, and surviving that time made me realize that I can handle anything….ANYTHING!!! Even this little cancer crap does not mount up to what I had to endure during those years. I am wide awake, I feel great, and I am not fragile.

I am currently on a spiritual journey and following a path to enlightenment. This may sound wacko to some, but everyone is entitled to their own opinions, thoughts, and beliefs. This could be a midlife crisis, it could be that I am looking for a better way, it could be that the Neurosurgeon knocked something loose in my brain, or it could be that by removing the chordoma compressing on my brain it has made room for a more expansive way of thinking. Whatever it is, I am on this quest to dig deep beyond the surface of my tattooed body. I also just want to put it out there, I refuse to consider the option of this being a midlife crisis. Until I get a ridiculously fast sports car that costs over $100,000 and a 28-year-old pool boy named Santiago who has a hot-bod, sports a banana hammock, caters to my every need including foot rubs and handfeeds me strawberries, watermelon, and grapes, do not think for a minute this is some kind of midlife crisis.

I am at a point in my life where I realize that I can manifest my greatest dreams, live to my fullest potential, embrace or set free whatever does not serve me, create the most beautiful life, and have anything and everything that I desire. I am growing spiritually and learning to embracing my uniqueness. Ohhhh, and am I full of uniqueness. I am kind of like an oversized bundle of confetti eggs being broken over heads at a Mexican Easter celebration. I am fun and festive!

For years, my greatest fears were my biggest waste of time. I shut myself off from new experiences. Fear shadowed over me. Fear stopped me in my tracks. Fear had me running back in the opposite direction. Fear deterred me from trying…..possibly failing, but prevented me from attempting to try. It is no wonder that all that stress and negativity led to having poor self-esteem, and eventually a very rare tumor. Things were always much harder for me, and my life did not have to be that way. My thoughts created chaos and drama. I eventually started working on ridding the turmoil in my brain. I began asking myself whether there was actually something really scary happening, or are they just the thoughts in my mind? Most of the time I create the fear in my head and those thoughts will prevent me from fully living and enjoying my life. It is crucial that I continue to remind myself there is a great sense of freedom on the other side of my fears.

I am a woman…a somewhat normal woman (whatever that means)…with an influx of hormones that burst out of me once a month, maybe twice, but definitely once a month. Depending on the phase of the moon or a retrograde or an exceptionally rough cycle I can sometimes have moments where I emotionally spiral. PMS can make me slightly hyper-emotional. I can high kick to the sauciest Beyoncé song, cry at that damn ASPCA song by Sarah McLachlan, or perhaps consider screaming at the idiot driver in front of me listening to his favorite heavy metal song while strumming his air guitar and flipping his hair around not paying attention to the giant sports truck that I am about to drive right up the ass of his vehicle. For the most part, I strive daily to be the most loving and passionate, unique individual; yet, I also can also be a pistol.

Something very special has transpired within me over the last several months. I was being called out on my fear-based, negative thinking and began focusing on how to create and live an optimal life. All of this was transpiring through my recent challenges. Every morning I now participate in a group gratitude list, I meditate, and I go over daily affirmations. Brushing my teeth with a black, charcoal toothpaste while looking at myself in the mirror really helps when I recite my daily affirmations. My morning ritual helps to set the tone for my day. I am acting and doing, even if it means I fail the first time. I choose to make my magical and prosperous life materialize instead of hoping good things will just miraculously happen.

May 22, 2017

Day 143

I have been working to not dwell on this whole chordoma situation. I could make myself crazy if I was to obsess on the possibilities of what the Neurosurgeon will determine in September. In reality one of two things are going to happen: I will either undergo another surgery or start on proton beam radiation. I honestly think that he surgically removed the entire chordoma, and what he saw on the MRIs were scar tissue in the areas that lit up. I intend to keep journaling and share my experiences, but it is not going to be about what is happening with the post-chordoma surgery. Until I know more about my options after the next visit, I am going to share random bits of my life. I intend to write a book, so these journal entries can be little samples and tidbits of why I am so awesomely unique and special.

I keep thinking about all the things that I have experienced over the last 7, 8, 9, maybe ever 10 years, and I often wonder how the hell I am still on my feet and trucking through life. There were times when I did not think I would make it through another day. My life took a complete dump in 2010, but I managed to persevere through some really rough shit. Seriously, I am an extremely strong woman who has endured a lot of heartache, chaos, and pain; Yet, I just keep getting up, brushing myself off, and working to the best person possible. This is not me dwelling on my past. I recently had lots of spare time while I was giving myself an insane amount of IV infusions to reflect on past experiences, be grateful for what I have and who I am, and let go of my resentments. My life adventures and challenges have helped mold me into the woman I am today.

From the wise words of Sweet Brown, “Ain’t Nobody Got Time for That!” I am not sure if you are familiar with her or not, but she was in a news interview after having to run out of her apartment when it caught on fire. During her very melodramatic recap, she explains how she got up out of bed to get a soda, then thought she smelled a BBQ. That is when she realized that the apartment complex was on fire. She had to run out of her house without shoes on. She thanks Jesus several times and in the midst of it all spurted out “Ain’t Nobody Got Time for That!” Her words of wisdom spoke to me. There are not enough hours in a day to waste my energy on what does not serve me. I do not have time nor patience for bullshit. Anywhooooo, the video is a must see, it instantly went viral, and I know you can watch it in amazement on YouTube.

Despite my own personal life-challenges, I still approach situations and people without much skepticism. I probably should be more on guard and quite possibly listen to that little voice of intuition that I sometime cram back into its little quiet space, but I am a giver and a doer. I like to think that I am an open book, I sometimes forget about my oral filter, and I absolutely love to laugh. My life is being fulfilled when I can be adventurous, give and help others, act on inspiration, express an unconditional amount of love, remain energized and positive, and be a great support system. In return I choose to surround myself with people who are honest, kind-hearted, loving, passionate, in touch with their ability to exchange positive energy, and ones who love to laugh. I am learning the importance of meditation and strengthening my connection to Source energy. The problem I was having until recently is I let people into my life that throw off my alignment, take advantage of me, and mistake all of my goodness for weakness….then I have to kick them to the curb because “Ain’t Nobody Got Time for That!” That fucking Sweet Brown and her powerful words of wisdom.

May 11, 2017

Day 132

I am so happy that I am finally getting back to my regular, daily routine. I returned to work this past Monday. I am one of those people who absolutely love, love, love where I work, what I do, and the team I get to do it with. I showed up to the first meeting of the day Monday morning and received a very warm welcome from a group of my amazing and supportive co-workers whom I like to refer to as my “work-family”. They had a little area set up with a “Sandee Strong” banner, and one of my peeps even made me special cupcakes….it is quite possible she made them for herself, but I will continue to believe that those delicious bits of frosted goodness were made especially for meeeeee!

My first week back to work has been slightly unproductive. I just keep telling myself that I am easing my way back into normalcy. While I was on leave from work, my boss disabled my computer access for the hospital to prevent me from doing any work. Like I said, I love what I do, so staying connected and working extra would have been something for me to do while I was trapped in Pittsburgh. I am pretty sure that my access was revoked because one of my siblings posted a photo on social media the day before surgery of me at the Neurosurgeon’s office, lying on an exam table, and on my computer. When my boss caught wind of the photo he immediately had my access cut off. I found it humorous because I know he wanted me to focus on surgery and recovery while I wanted to focus on anything other than what I was about to endure.

The first thing I did bright and early Monday morning was place a call to get my computer access reactivated. The IT Associate was having some issues getting my account and access restored. Somehow I was issued a brand new work email account, so all 50,000+ emails that I had stored in different folders under my original account were gone…years of hording emails. By today everything was straightened out, so I took advantage of the spare time during my work week to get updated on all of the things that I have missed out on while I was gone. I was so happy to see everyone and have a chance to caught up.

It is crazy to think that I have been on leave from work just under three months. I am extremely grateful that I get to return to my very unusual life as if nothing has happened. I feel really good right now, and not worrying about the future. I am learning that it is pointless to stress about the unknown of what lies ahead, and I am living in the moment focusing on today. In a little under four months I can give attention to the next step in my chordoma treatment and traveling back to Pittsburgh.

Day 125

Ohhhh Pittsburgh. I don’t quite know what to say besides I love leaving you. No offense to my doctors or anyone reading this that happens to be from there. I just do not find the city to be bucket list material, or somewhere I had planned to visit on multiple occasions. There are countless other places in the Northeast that I would rather spend my money visiting. Although, while in Pittsburgh I did meet several people who were incredibly nice, and the city has a really pretty junction where three rivers come together. I was extremely happy to have my mom and amazingly fun and funny friend, Mary, meet in Pittsburgh to accompany me to my follow up appointments with the Neurosurgeon, Infectious Disease (ID) Specialist, and Otolaryngologist (ENT Specialist).

On the day before my follow up visits, I spent four hours in a MRI tube with a plastic cage holding my face in place. For some reason (possibly post-operative, drug-induced) it seemed like a really good idea to schedule a skull based MRI and full spinal MRI back-to-back. It did save me from having to get a double dose of IV contrast, but CRAP!!!! Four hours is a long time to sit still in a tube. I asked the MRI Tech if there was any way I could listen to music while pretending not to be lying in something smaller than a coffin. Luckily she did have a set of earphones, so I listened to old school hip-hop while trying not to, as my grandma would say, “shake my feather duster.” I mean, how do you not want to move to Nortorious B.I.G., Mob Deep, Nas, Tribe Called Quest, Wu-Tang, Warren G, Nate Dog, and the list goes on and on and on?

Of course the problem with a four hour MRI is getting that sudden onset sensation to itch my face. Also, there was that tickle on my nose with an urge to rub it. And, what would be a better time for those types of sensations to occur other than when I am supposed to lay very still….for four friggin hours? I kept trying to remind myself that quadriplegics most likely have the same sensations, and they are unable to do anything about it. I needed to muck it up and just deal with it. Needless to say, I managed not to scratch once during the scan. I am really glad I didn’t try because I would have realized that I was crammed in a tube like a sausage in a casing and unable to put my hand to my face. Now THAT would have freaked me out.

I am happy to say that the visit with the ID Specialist went well, and I will not have to see her again. I saw Dr. Gardner, my Neurosurgeon. He wants to hold off on radiation while I continue to heal from my two surgeries. He did say that the Skull Based MRI was difficult to read because he could not tell the difference between scar tissue and possible residual chordoma. We talked about the Spinal MRI, and he expressed concern over a few nodules that he saw on my lumbar/sacral spine. I mentioned that I did have a lumbar drain in my lower back, but he could not determine whether the abnormal growths were scar tissue or chordoma. Since chordomas are slow growing yet aggressive tumors, he wants me to get another round of MRIs at my next follow up visit in four months. This way he can see if anything has changed or grown in size. I need to remain positive about my outcome especially since all of the chordoma websites share information regarding reoccurrance and very poor prognosis.

The last follow up visit of the day was with Dr. Snyderman, my ENT Specialist. I wound up leaving his office with a terrible headache. The feeling was similar to those persistent headaches that I had after surgery that just would not ease up. Nothing seemed to relieve the pain, not even for a moment. I started thinking returning to Pittsburgh for my follow up appointments was the cause, or perhaps it had to do with the large amounts of disgusting crap Dr. Snyderman managed to pull out from one of my nostrils.

In March, I complained about my sister’s inability to keep a straight face at the last ENT exam before being able to fly home. This time my friend Mary looked like she was going to blow chunks while Dr. Snyderman looked inside of my nose. I thought that he was just going to use an endoscope to examine the nasoseptal flap that he created from the fat and fascia of my right thigh. Just a FYI, the purpose of using fat and fascia to create a nasoseptal flap is to provide a separation between the contents of my skull from the inside of my nose. It is a barrier that prevents me from having a CSF leak from a hole that was created during the chordoma resection. The hole led from the back of my nose directly into my skull, so they could to get to the tumor.

So instead of Dr. Snyderman just taking a little looksie, he decided to debride my brain….not really. He decided to debrided the nasoseptal flap which was covered in a big, black scab. Gross??? Why, yes it really, really was. So, not only was Mary facing me unable to keep her Botoxed face from contorting, but also the Chief Resident who was observing the procedure standing next to Dr. Snyderman could not keep a poker face. I totally called him on his facial expressions to remind him that eventually he will be performing the same procedures, and he had to get working on keeping a straight face while doing less than desirable things on his patients.

I really wish I could write something inspiring and uplifting right now, but I am just not feeling it at the moment. I am really disappointed, hurt, and sad. I don’t want to go into the details right now and will save it for my book. What I will say is that I received a huge slap in the face of reality while on the trip to Pittsburgh. I am really bad at going with my intuition, and I always want to see the good in people. I forget that not everyone has a big heart. Throughout my life I will continue to come in contact with people who do not see my value and are only looking out for themselves. I guess the reality check threw me off a bit; although, I continuously evolve and realize that some of my flaws and imperfections are part of the beauty that make me unique. I know my self-worth and what I deserve even while going through this bout with cancer as well as all of the other bullshit I have had to deal with over the last several years. I learn from my failures, I maintain my self-respect, and I keep moving forward one step in front of the other. Well, I guess I did have something inspirational to say.

January 15, 2017

Day 16

It’s been 2 weeks since I heard some news that has completely rattled my world. I have had headaches for well over 2 years. I finally convinced my Primary Care Physician (PCP) to order a MRI due to this growing mass that I discovered on the back of my neck several months ago. I was wanting to see if maybe the nodule I was feeling had anything to do with my continuous headaches that I just came to assume were hormonal headaches or tension headaches.

Friday, December 30, I went for the MRI, and Saturday I had a missed call from my PMD. Now, it’s never a good thing when your doctor calls you on a Saturday. As it turns out, I have a very rare tumor called a Chordoma. It is located on my cervical spine at the junction where the spine enters my skull. The tumor has been growing for who the hell knows how long. The Chordoma has pushed up through my skull and is now compressing on my brain. In July 2015, I went for a CT Brain due to the reoccurring headaches. I was told the scan was negative; Although, after being review again by a Neurosurgeon, the scan did show the tumor.

I had no idea what a Chordoma actually was, so I looked it up on the internet (should have not read all of the things that I did). As it turns out, a Chordoma is an extremely rare spinal tumor: 1 in 1 million have this type of tumor. A clival chordoma, which is what I have, is even more rare than the sacral chordoma….go fucking figure this rarity is something I am gonna have growing in/on me!!!!

Unfortunately, Chordomas do not respond to chemotherapy, and the very specific proton beam radiation is administered in an effort to destroy any remaining cancer cells in the surrounding tissues after surgery.

Also, I have discovered that this is not a tumor you want any ol’ neurosurgeon to remove. It is important to find a Neurosurgeon who has performed several clival chordoma surgeries. I have found one hospital that has done almost 100 in the last 10 years…..and this place is highly recommended. It is very difficult to find the best of the best of the best. Everyone I ask gives me a different recommendation, and several of them have never even done a Chordoma surgery. I have found 5 Neurosurgeons who have deal with Chordomas: Houston, Dallas, NYC, Pittsburg, and here in OC.

I got my ass swiftly kicked into 2017, and since Saturday, December 31, I have been in fight mode. I have been on a mission to research, network, and find the most qualified of the 5 neurosurgeons to perform my surgery.

I am sharing my story because there is power in numbers. For all I know someone on my FB page knows someone who has gone through something similar with a Chordoma. I refuse to be sick a succumb to this type of disease.

I have been through some pretty rough shit in my 44 years, and I always come out the other end smiling and wiping my hands clean from the disasters at my back. I keep truckin’ through life, and I have learned from all of my experiences. This time I’m afraid it is gonna be a little different. I don’t feel sick, and I don’t want to. I am my own story, and I refuse to be a statistic like what is listed on the internet. I will beat the odds. Seriously, no ones wants me to pull a Thelma and Louise.

January 16, 2017

Day 17

I cannot sleep. It has literally been days since I have had a full night’s rest. I think the worst of it was the 2 hour attempt at sleep the night before I came out here to New York. Every time I would get somewhat close to deep sleep, some awful nightmare would violently wake me…..like practically sitting up in bed, wake me. I could not recall any of the bad dreams, but I do remember the sensations throughout those very short, unrestful 120 minutes. When my alarm went off at 3:30 am to catch an early plane, I got out of bed and realized I was feeling emotionally spent. It was difficult to maintain my composure and keep truckin’ my overly tired ass forward. I was sleep deprived and incapable of keeping it together. Regrettably, my travel partners happen to take the brunt of my melt down.

New York is one of my most favorite places to visit or exist. I would love to say that my main mission for this NYC visit was to prance around Central Park and raise havoc on their wonderful and busy city streets. As circumstances would have it, I was in NYC in search for the absolute best Neurosurgeon and their team of specialists to remove the tumor that is compressing on my brain. Today I had two separate appointments. The first was at Kettering Sloan Cancer Center with a Head and Neck Specialist. The second appointment was with the Neurosurgeon at the main Sloan Kettering Cancer Hospital. I really didn’t mind the long walk through the city to get to the separate locations. I have had so much pent up anxiety that walking countless blocks was a great choice to exert energy. It was the power walking that practically killed my calves….that and carrying a 10 lb. dog on my shoulder while doing it.

The first MD shared how he was going to have to go through my nostril with a camera followed by a tool to drill through my cranial bone. He shared the possibility for a cerebral spinal fluid leak that could come up a few days after the surgery as well as the procedure for patching the area by going back into my brain to plug the hole with skin they take from the inside of my nose. (Not happy face!)

The second visit was about the same. The Neurologist explained how she would take out as much of the tumor as they could then attempt radiation on the rest of it. She was unsure how long the surgery would take, and everything just seemed vague. There was a complete lack of reassurance that everything was going to be ok. Her assistant then handed me power of attorney papers and asked me if I wanted to go ahead and sign up for the surgery. (Are they fucking kidding me????).

I would not say that this was a wasted trip. I at least realize that this was NOT the team for me. This is the process for what it is going to take to seek out the best of the best of the best. I knew this was not going to be an easy process. I was just hopeful that I could move in with Andrew for a month between surgery and recovery. I would love to invade his space and take over his new home.

January 17, 2017

Day 18

I was told that this trip to New York was going to have its low points as well as its high point. I didn’t quite expect it to completely flow in the order of low to high. My assumption was that it would be a see-saw of insane emotions especially since there had been a zig-zag of feelings ranging from the high I felt in fight mode to very low, being fearful of my future. Well, that was NOT how this venture turned out. I hit the lowest of the lows and left NYC feeling empowered and motivated.

I have had two emotional breakdowns since finding out about my spinal tumor. The first one happened during week one where I sobbed and snotted all over Zeus. He was such a great companion and just sat there in front of me while my facial orifices continuously drained all over him. The second mental moment was when I totally lost my shit the morning I was leaving to go to NYC. The problem with the second melt down was that I continued to spiral out of control for the next few days after arriving in the city. Inside of me was this tornado of chaos that swirled around while sucking all of the remaining strength and positivity right out of me. I was left with an empty pit in the center of my chest. I felt heavy, sour, dark emotions and just continued to spiral. I managed to put a ginormous strain on things because I just couldn’t quite keep it together and refrain from vomiting my pent up emotions everywhere. It was similar to the scene in The Exorcist where the devil spun her head around while barfing in all directions. I was hoping my moment was not as gross, but it very well could have been.

I love, love, love being a caretaker, and I am not embracing this role reversal very well….I guess that is why nurses make the worst patients (True story). I have such a hard time asking or accepting help, and the lack of control over this situation has been taxing. Since I currently have no control over the fact that this very rare tumor has invaded my skull, I am grasping onto everything and anything to manage. Obviously this behavior has not been very beneficial (go fucking figure) and landed me in a dark pit.

I went to see the Head and Neck Surgeon as well as the Neurosurgeon yesterday during the lowest point on my trip. I had such an over abundance of psycho energy that I decided to power walk 35 blocks to my first appointment. I was hoping to calm down my energy level, but instead I just broke a sweat and panted for several minutes. I just kept hoping that the doctors would say something that would resonate and reduce my stress level. They gave me the best and worst case scenarios; Unfortunately, they could not give me the feeling that everything will turn out just fine. It had nothing to do with their bedside manner, and they were exceptionally compassionate. It was just the content of information I received and the reality of their experiences on Chordoma surgeries. I didn’t like hearing about the potentials of only a “partial” tumor extraction, the chance that I could be left with double vision, the risk of an arterial bleed, how the surgery will decrease my sense of taste and smell, the possibility of a CSF leakage with a second surgery to go in and patch it, and the “we hope” the radiation will destroy “most” of the microcells. To top it off, the neurosurgeon said it would only be a 4 hour surgery. My brain is not a Taco Bell drive-thru. Take your damn time and get the mass completely out of my brain stem region without damaging any of my cranial nerves! As you can imagine, I didn’t like what I heard. When it came down to it, I just didn’t feel confident enough with the team, nor did I sense that they were “the one”. I just did not get the feeling that they were the best of the best of the best.

I was hyperly aware that the crazy train I was driving had barreled wayyyyy off of the tracks. It was suggested to me that I seek out assistance to help clear my negative energy and rid me from my toxic state. How the hell could I expect to beat the odds when my body, mind, and spirit are not aligned? After the two doctors’ appointments, I went and sought out the necessary healing, so I can be at an optimal state to deal with my situation.

My sister Laurie asked if I was going for a colonic or enema. Well, no. That was NOT the type of toxins I was seeking to rid my body of, but I did feel like total shit. I did what every Joe-shmo does and met with a Shaman. There truly is no describing what occurred at that appointment, but it did not include a poop-pipe cleaning or even drugs for that matter. During my session I could actually feel the blackness moving out of me, and I gained this clarity that I was missing even before I found out about the tumor. I can finally take full, deep breaths, and I feel confident facing my daily challenges.

On the final day in NYC, I kept receiving important and inspirational messages. The most profound were from my Sikh cab driver who had me shedding happy tears while we drove to the JFK Airport. I heard all about the power in prayer, law of attraction, respect, peace, and simplicity. In the end, I received everything I needed from my NYC trip including the very special ride to get home where I need to continue my mission to make necessary things happen.

January 18, 2017

Day 19

There is nothing better than waking up sideways in bed having my space invaded by 4 dogs and one of my cats. I was being log rolled face-forward into my headboard with my 3 big dogs, Daisy, Ozzy, and Zeus, laying on my backside. Somehow little Luna had found a safe spot underneath the pillow by my head, and Diego, my cat, found his resting place on my hip. Both Luna and Diego do really well to avoid being mushed by the 3 big dogs when we sleep. Although, I’m not exactly sure why everyone insists on being practically on top of me. I tend to wake up positioned like a pretzel sweating profusely from all the excess body heat. I use to think that I looked somewhat pretty when I woke up in the morning. Now that I have a menagerie of critters taking over my bed, I wake up with the most insane bed head. I cannot rule out that someone sneaks in during the middle of the night and just noogies the shit out of my hair. I mean, holy friggin Einstein with his finger in a socket! I have to do a triple take in the mirror most mornings and wonder what the fuck happened while I was sleeping. Seriously, it looks like I do head-spins or something. I am really not complaining about waking up like sleeping beauty being crowded by critters, and I love sleeping on a limited size corner on a king size mattress. There is something special to be said about waking up to a symphony of snores while trying to MacGyver my way out of bed.

Today was pretty uneventful. I wound up placing a few calls to try to set up appointments with a two other neurosurgeons in different states. I really want to check out UPMC in Pittsburg, but I am waiting for the return call to make the appointment. I have already been notified by the Mendelson Women Posse (my mom and two sisters) that they will be accompanying me to my next appointment. Well yay…I can’t wait for Pittsburg…in the winter. I hear it’s, well, very Pittsburgy this time of year.

Although my mom has arranged and sat in on a few conference calls with Neurosurgeons, I am really okay going by myself. The things being discussed are not the most pleasant and easy to process. Plus, this is MY interview, and in the end I get to decide who will perform my surgery. My thought is once I find the best team to remove the chordoma, I will have my parents interview them, too. I just don’t want to waste their time if I am not impressed with the information I am being given.

So far, I have attended appointments to speak with a Radiation Oncologist, a Head and Neck Specialist, and two Neurosurgeons. The Neurosurgeons wanted to know if I was alone. One of them said, “Why don’t you go get whoever accompanied you and bring them back to the room, so we can all talk.” I informed him that it was just me, and he gave me this look of, “Woman, do you know what the hell is growing in your fucking skull???” (Seriously, imagine a look like that.) All I could do was smile and start my list of interview questions. Another Neurosurgeon said, “Did you come by yourself?” My response was, “Yes I did.” Then they said, “Are you sure? We can wait for them to park the car and come up.” Ummmm, yeah, I’m pretty sure that there is no one else here except me (and Luna….yes, she came with me to my consults). Maybe I should have just gone back into the lobby and dragged some random stranger in the room with me. Possibly the 100 year old man with what looked like a horn growing out of his head. These doctors seemed surprised and acted as if I am headed to surgery THAT day. No people, I am just gathering information on who is the best of the best of the best. I compare these interviews to looking for the best recipe. You are gonna find countless people who will tell you that they make the best chocolate chip cookies. There will eventually be “the one” that sounds the most delicious.

Thursday I am headed to meet with the Radiation Oncology Team at Scripps. It will be a good opportunity to get some alone time on my 4 hour car ride to-and-from San Diego. I downloaded some audiobooks to help preserve my newfound state of alignment and keep me in a positive mindset. I am ready for this next mission.

January 19, 2017

Day 20

Today I drove out to San Diego to go meet with a Radiation Oncologist at Scripps Proton Therapy Center. I know at some point I’m gonna need radiation to help eradicate this tumor, but the question has been at what point is the radiation to be performed. One neurologist told me that I would need proton beam radiation before and after the surgery. This information conflicts with what I’ve been told by three other neurosurgeons. Like I said before, everybody seems to have their own way of wanting to treat this chordoma.

I was actually looking forward to taking a 2 hour drive along the ocean to my appointment. It gave me the opportunity to clear my mind and enjoy some personal time. I started listening to an audiobook called “The Law of Attraction.” The teachings within the book are of great worth to many people I know. It seemed the drive was the most appropriate time to start listening to something impactful and life changing. I could go on and on about “The Law of Attraction”, but the point is that what I heard resonates with me. I am grateful that someone very special to me shared the gift of Abraham-Hicks and their teaching…..especially now when I need it the most.

I have been hoping that I could stay close to Huntington Beach for my radiation treatments. Surgery is a totally different story, and I will more than likely wind up somewhere on the east coast. Who knows where at this point. My mom has other thoughts on where I should go for proton beam radiation. She keeps telling me how Irving, Texas, has a great radiation treatment center. It just so happens that Irving is quite a bit closer to my parents home then San Diego. I want to be close my home, puppies, kitties, fish, tarantulas, and work.

The meeting went very well with Dr. Chang, the Radiation Oncologist. It took about three hours to perform an exam and answer all 20,000 of my questions. About a month or so after the chordoma is removed, Dr. Chang said I would require proton beam radiation 5 days a week to receive approximately 45 treatments. That winds up being 8.5–9 weeks of radiation. In the end, I felt very confident that Dr. Chang has my best interest in mind, so he’s hired! We discussed the risks involved, but I can handle it. Seriously, if I can tattoo over 75% of my body and cry only a few times, I’ve got this!

January 22, 2017

Day 23

Yesterday was a pretty spectacular day at the Abraham-Hicks Workshop in Long Beach. I could have sworn that the introduction lecture was being directed at me considering everything that was said applies to the way I have been conducting my life. If you are not familiar with “The Law of Attraction” or any of Esther Hicks books, I highly suggest doing some research and get to reading. I am so grateful for being introduced to Abraham-Hicks, and I am extra grateful for the opportunity to connect and create new memories. What I am discovering is life changing.

Esther says that all positive manifestations start with knowing how to meditate, so I am going to start meditating tomorrow morning. I have no idea how this is going to go since I have a crazy, overactive mind and sitting still is not one of my strong points. In the past when I have tried to meditate, I will stare at a specific spot on the wall or ceiling. Some how I go from staring, concentrating, and deep breathing to wondering if the spot on the wall actually resembles Colonel Sanders to how delicious donuts would be right now to wondering how warm the water is in Grenada to what kind of shoes would go great with my new grey jeans to maybe I should clean out my fish tank to SQUIRREL! Aaaannnnnd, that’s pretty much the gist of how my meditation goes.

My mom has been helping me research and get in contact with different neurosurgeons with experience doing chordoma surgeries. On my journey to find the best of the best of the best, I have placed several calls to any number of neurosurgeons across the US, left voice messages for those who do not answer the phone, and never get a return call. In some instances my mom gets involved by asking me, “Would you like me to try and get in touch with them for you?” When this occurs, magic happens.

I imagine what takes place is my mom and I hang up, she looks in some Underground Secret Society of Scientists online phone list that has every back-end phone numbers to any medical provider in the world, or maybe she even pulls up the physicians’ personal cell phone numbers on the secret list, and then throws her Dr. Mommy “Do You Know Who I Am” Mendelson weight around. The woman may be 4'9" and weighs 100lbs, but man can she get shit done! I seem to get immediate calls from the neurosurgeons’ administrative assistants who are ready get my information to arrange an appointment. Hell, sometimes I even get a direct call from a Neurosurgeon or a Chair of Neurosurgery. Magic, I say….My Mommy Does Magic!!!!

I am in the process of booking flights to go meet with a Neurosurgeon in Pittsburg named Dr. Gardner. There is a lot of information that I have found on the internet regarding his expertise in skull based surgeries. One thing that I found odd in my research on Dr. Gardner was what was listed in US News & World Report. It is written that he has been in practice for 11–20 years. What? Maybe I am the only one with a concern about those numbers, but there is a pretty wide margin between 11–20 years of neurosurgical experience. I should probably start my list of many questions inquiring about his experience 11–20 years of experience. Oh, and by the way, did I mention that I was being accompanied to Pittsburg by my mom and 2 sisters? The Mendelson Women have decided to venture out because A: they are truly concerned,have questions, and want to show support, or B: because they loooove Pittsburg in the winter time, and the neurosurgeon is kind of hot. We will find out the answer as soon as we meet with the doctor.

January 24, 2017

Day 25

Nothing new happened this past Monday except some insomnia and late-night computer research. Last week I searched Instagram for #chordoma. The hashtag search lead me to a woman whose husband had chordoma surgery at UPMC (the Pittsburgh hospital) by Dr. Gardner. I immediately sent her a message asking if her husband would be willing to share his experience with me. I included my phone number in hope that I would hear back from her. Two days later I received a message, and she told me her husband, Matt, would be in touch.

Today I was able to spend over an hour talking with Matt on the phone about what he had to undergo after being diagnosed with a chordoma 5 years ago. His story is very similar to mine in that once we found out we had clival chordomas we immediately started our journeys to find the most experienced neurosurgeon.

Matt was (is) blessed with having the much needed support from his amazing wife and brother. From our conversation, it sounded like Matt’s wife really took the reins and went out on a mission to find the best neurosurgeon. Through several Neurosurgical visits, they received a recommendation to consult with Dr. Gardner.

Matt told me all about Dr. Gardner and the fact he knew right away during his visit that he had found “THE” neurosurgeon. Matt asked if I had ever seen Dr. Gardner, and then began explaining how he looks like a 7ft Swedish model…I made sure to take note of that important piece of information.

It was helpful to connect with Matt and learn about his journey through the chordoma removal, post surgical pain, nostril stents for 3 weeks post surgery (Mmmmmmmmmm, can’t wait!!!), and the need for several weeks’ rest during his healing process. He had to remain in Pittsburg for around 3–4 weeks after surgery since the doctors involved needed to follow his progress. The amazing thing is that Matt is now 5 years cancer free with zero neurological deficits.

His secrets: stay positive, stop doing research, never give up,and never give in.

January 30, 2017

Day 31

It has been quite a while since my last journal entry (ok, it’s really only been 5 days….I’m being dramatic).. Since my last entry, I have been internalizing things and very poorly dealing with the reality of my situation by avoiding the opportunities to share my feelings. The fact that I am facing some very difficult challenges ahead has yet again consumed my thoughts and is stirring up some internal chaos. The repetitious thought of “I don’t want to do this!!!!” is making me feel like a child who is being asked to do a chore by their parent. Well, the reality is I don’t want to fucking do this!!!!!

I keep trying to figure out how the hell I wound up with a tumor that people have a 1 in 1 millionth chance at getting. I realize that I am special, but I do not want to be THIS special. I am so special that finding an experienced Neurosurgeon to perform the operation to remove the chordoma is almost impossible. My brain is in overdrive, and it is making me NUTS!

It is crazy to think that this tumor has eaten away at a portion of my cervical spine at the base of my skull, and there is a possibility that removing it will cause head instability. There is also the thought of how the chordoma is compressing my brainstem, pons, and medulla. Also, considering the location of the tumor, I am terrified of having cranial nerve damage when they go to remove the tumor.

I am extremely fearful of the surgery as well as the healing process. The thought of having my skull and sinus cavity drilled through to somehow meticulously remove a tumor freaks me out. Another concern is the possibility of a cerebral spinal fluid leak especially since this tumor has eroded my spine.

From my understanding, post surgery is brutally painful. I have not had much success with general anesthetic, and it is a given that I will barf when I wake up (FUN!!!). Also, I am not a fan of narcotics, and they have a tendency to upset my stomach. I am not sure how I will either manage the pain or avoid the nausea and vomiting…..again, sounds like a party, huh? Oh, did I mention the bilateral nasal stents and sinus cavity packing? Yup. Who wants to join the party???

I will have to remain close to my neurosurgeon and EENT for 3–4 weeks after surgery. This means I will have to rent a house and figure out what to do with all of my animals. I truly do not want to be away from them for a month, and I am trying to think of a way to take all of them with me. Ok, maybe not all of them, but yes….all of them. I am not sure how I would get all of my fish relocated without any issues.

I have not even touched on the 9 weeks of double dose proton beam radiation therapy. I know for sure Dr. Chang at Scripps in San Diego will be running that show. I intend to take the 1.75 hour drive, 5 days a week (yes, 45 sessions or proton beam radiation). The positive things is that the drive will be a good opportunity to listen to audiobooks. Although, I am concerned that the side effects of radiation will start to kick my ass after a few weeks. It could be the nausea, blistering burn on the back of my head, the hair loss, the fatigue, or all of it that wipes me out.

I am currently on a plane to meet my mom and sister, Laurie, at DFW Airport where we will be boarding a plane to Pittsburg to meet a highly recommended Neurosurgeon. Dr. Gardner seems to have a significant amount of experience in his 11–20 years of practice (weird range to have listed in a bio), and he comes highly recommended.

To sum things up, I am currently living in extreme fear of the unknown. I am having difficulty with the lack of control in this situation and obviously dealing with a rough moment. My head feels so cloudy, and I am sick of the constant vice-like grip headaches. Any added stress is hitting me ten-fold.

I am pretty sure that I am out of mind-body-soul alignment, and I am in need of some spiritual guidance. I think it is time to seek out some additional healing therapy to help get me back into a healthy mental state. As my mom said Barbara (my little sister), “Sandee went and saw a Sharman.” Barbara tried to correct her by saying, “shaman, not sharman.” My mom’s response was, “Yes, that’s what I said…a Sharman”. Well, maybe it is time for me to get back in contact with the Sharman.

January 31, 2017

Day 32

This morning I met with Dr. Gardner at UPMC….it was considered “the big day” for the scheduled meeting with this highly prospective Neurosurgeon. This was the one meeting that I did not want to attend alone. I am really grateful that my mom and sister were able to accompany me to Pittsburg as well as participate in this particular interrogation, I meant meeting. The consultations with the previous Neurosurgeons were different because I knew within the first 2 minutes that they were not the one(s) to perform the surgery. I already had a phone conversation with Dr. Gardner, so there was definitely a need to meet him in person and ask more questions.

Initially at the UPMC consult, a Neurosurgical Fellow came in to meet with us, and even he gave me a better feeling than any of the previous Neurosurgeons. He did not candy-coat my concerns, his bedside manner was very calming, he was very knowledgeable, and I found him to be trustworthy.

Dr. Gardner came in shortly after the Fellow, and he was able to answer my laundry list of questions (as well as my mom’s enormous list). He has a level of confidence when discussing his ability to perform chordoma surgeries, and this is what was missing from the other contenders. He did not say that the surgery is without risks, but the fact that he has performed around 200 chordoma surgeries within the last 10 years makes me feel more reassured about having a positive outcome. He said that the surgery would take approximately 8–10 hours. He also explained that there would be an alternate neurosurgical team to assist with the surgery due to the length of the procedure. He did assure me that he would be the one to actually remove the tumor by attempting to peel it away from my cranial nerves and vein without causing any damage. If there was a chance of causing neurological damage or deficits he would avoid removing the entire tumor.

We discussed the risk of a cerebral spinal fluid (CSF) leak, and if that occurred they would need to put a drain in my lower back for a few days. In addition to a CSF leak, they would have to remove skin from my thigh and patch the area on my spine; therefore, I would have a spinal tattoo, and THAT would be a story to tell. Again, I would be one in a million, or maybe even the only person with an actual spinal tattoo.

I am fully aware that my chordoma needs to be removed ASAP, but I was hoping to have a few days to process everything we discussed at this meeting before moving forward with scheduling the surgery. I really needed some time to go home and procrastinate a little longer, but instead I was highly encouraged by My Cheering Committee to go ahead and set a date for the surgery.

The anxiety and nausea kicked in when the Surgical Coordinator walked into the room to discuss the earliest available surgery dates. I was hoping that maybe June or July of this or even next year (whichever) would be free, but instead I set the surgery date for February 22, 2017 (222). I would love to be able to say that I am super excited about having my head drilled into, so a hole can be created just big enough to stick a camera and some other high tech pinchy, cutty, grabby things (medical lingo) through to get at the tumor. Yeah well, that would be a gi-fucking-gantic lie!!! I am freaking out a bit, kind-of- ish a lot, and this is just not enough time for me to plan out my life for the next few months.

I understand that these overwhelming feelings of anxiety and stress do not serve me, but it is obvious that I need to have a female, 44 year old, overly exaggerated-hormonal moment, or two, or three. I feel vulnerable in this situation, and I am struggling with my ability to trust. Also, I cannot stand all of the unknowns, and I want to dictate exactly how my surgery and recovery will transpire. I would love to create a storyboard called “Sandee’s Surgery and Recovery” where I would lay out in sequence how perfect the entire process would happen…..and The End.

Currently, I am at a point in my coming to grips with the severity of this situation, and I need to remind myself over and over again that faith, strength, and positive are what will really get me through these challenges in my life. I need to focus on today and think more consistently on not live in the past nor attempting to predict the future. I am capable of manifesting a healthy, stress-free, and joyous life when I apply the concepts I have learned from The Law of Attraction. So, obviously now is the time I to get to work to create a life of consistent goodness! Forget the storyboard, forget the anxiety and stress. I need to just allow myself to float through this situation trusting that this too shall pass, especially since I still have alotta shit to do!

February 7, 2017

Day 39

This fucking chordoma has got to get the hell off of my brain and out of my spine. I mean ALL of it, not part of it, not half of it, not even most of it. I want it gone! It is causing a huge disruption to my life, and I feel as if there are so many things that I should be doing other than dealing with a cancerous intruder. I feel like my life is on hold, and I am unable to make future plans. I am sick of the headaches, tired of the eye tension, and ready to get rid of the constant neck and back pain. Can I blame my forgetfulness on the tumor even though it’s really not a brain tumor, just a spinal tumor mushing on my brain, so it can take up residency? Sure, why not?

I forgot to remind myself last night before I went seeking out who knows what on Google NOT to accidentally look up “rare spinal tumors.” Bad idea! Instead, I meant to say, “Hey you (me), let’s just go on Facebook….again. It’s been almost 2 whole minutes since the last time I scrolled through my feed to see what dogs have been dumped at Carson Shelter, or some more crap about Donald Trump, or my new favorite, whose LuLaRoe stretchy pant sale do I need to attend immediately before they sell out?”….And, I’m pretty sure FB was probably still running somewhere in the background on my phone as if I had never left. Let us not forget Instagram. I’m sure that app was draining my battery as well. Instead of seeking out depressing information about Chordomas, I could have done some online shopping because I could never have enough pairs of shoes. (Who am I kidding?) They are practically spilling out of my shoe closet at this point from the recent stress shopping that I have been doing.

I am not too stoked about recovering for a month in Pittsburgh after my surgery. Yup, since we really do not know much about what the Neurosurgical Team will find when they get to the tumor, it is hard to say when they will give me the okay to fly back to Huntington Beach. There is also this thing about having to purchase a one way ticket to Pittsburgh, where it is super Pittsburghy this time of year. I realize that there are so many things to do on a great winter day in Pittsburgh, and I should take advantage of the amazing opportunities I have while visiting this bucket list city. For instance, I could go outside and look at the rivers, get snowed on, slip in ice, catch a nice rainstorm that turns to sleet, sit my ass on a very firm, foamy, particle board couch in the extended stay hotel of my dreams, possibly watch an excessive amount of TV, or even Facebook until I pass out. There is always that Facebook to scroll through over and over and over and over. Seriously, there are a plethora of things that I could be doing in Pittsburgh this time of year other than being winey about having to have a rare spinal surgery.

Aside from all of the goodness listed above, I have been working to manifest a rapid healing process, so I can get home to my animal family faster than Dr. Gardner expects. I have been getting lost in my morning meditation, saying my daily positive affirmations, being grateful, and reminding myself that this is just another one of life’s challenges. I read one of the funniest little things on the internet a few days ago that just seemed so fitting for my situation, so I decided to share. It truly reminded me that I still have so much to do in this lifetime. Chooo-friggin-chooo!!!

February 9, 2017

Day 41

I have been working on getting things in order before my surgery as well as the lengthy recovery period. I should probably consider making a list of things I need to do in order to help me remember everything that needs to get done beforehand, but I keep forgetting right after I remind myself to make one. I have been having more “squirrel” moments within the last year or so….yes, squirrel moments are a real thing. Seriously, my memory has gotten really bad. I am not sure if it has to do with the chordoma compressing on my brain, or if it is related to being Klutz-O the Kid who had several head injuries as a child. It is up in the air as to whether I should have been one of those kids that wears a helmet all of the time to prevent bashing their head. Whatever the reason, I need my memory to remain somewhat intact. I was planning to go back to school to get my Masters of Science in Nursing this past January. Unfortunately, I am having to deal with this shit instead of my continuing education.

Another issue that I am having is that I no longer have the most optimal hearing. I have this horrible tinnitus, and I tend to hear part of conversations. I have to piece together what people are saying to me unless it is really quiet, or I am having a face-to-face conversation. I have an amazing friend who has a traumatic brain injury and is also hard of hearing, so when we are together we spend more time saying “WHAATT?” and “I can’t remember what I was talking about.” I can only imagine what it will be like when we are old, especially since we are already having to practically yell to hear each other along with the ever so often, “awww, forget about it… I forgot what I was saying.” Does anyone know what ever happened to those ear horns that people used back in the day? I am thinking that those should make a comeback, and maybe (just maybe) I will be the one to start a new trend.

As my surgery date approaches I am getting more annoyed about this friggin spinal tumor. I recognize that this is just another hurdle in life, but come on already….enough of the hardcore hurdles! I am finally realizing that I need to optimize my life. I have been taking this life-changing opportunity to do some self-reflection and self-improvement. My eyes are finally wide open, and I am aware that I have the ability to manifest the most vibrant, joyous, and positive life.

As I reflect, I realize that I have not been the biggest bundle of joy over the last few years. I have had to overcome some really difficult life-challenges, and I did it filled with fear, resentment, guilt, and anger. Considering I am now faced with a chordoma, it has become obvious that my previous actions and reactions did not serve me. I managed to manifest very difficult and emotionally draining situations. Although, I always seem to persevere under some of the most demanding circumstances, and I have remained extremely resilient and determined to stay connected to my inner strength. I have finally grown extremely tired of the constant battles in my life.

I am learning how important it is that I continue to shift and raise my energy vibrations to ensure that I am bringing positivity, unconditional love, passion, and joy to my life. What I put out into the world is what I will receive in return. I am a work in progress, and I am discovering that I am capable of attracting what I wholeheartedly believe I deserve in this life.

February 19, 2017

Day 51

I am currently on a plane headed to Pittsburgh where I will start the pre-op and surgical process. I have avoided journaling the last week or so because I just haven’t wanted to think too much about what I am about to endure over the next several weeks. I have been staying extremely active and busy doing things such as yesterday seemed like the perfect day to completely clean out and rearrange my garage. Why, you may ask? Who the hell knows? I also very meticulously (in an OCD manner) hand vacuumed dog hair off of the inside and outside of several sweaters that I wanted to bring on the trip….don’t judge me. Unfortunately, I have not been sleeping very well as a result of spinning my wheels. To be honest, I am terrified, and staying busy has been keeping me from thinking too much about the surgery. It is the fear of the unknown, and the lack of control over the situation that really gets me. I just wish surgically removing the chordoma was as easy as taking out an appendix. My thought is the Neurosurgeon will know more tomorrow about the risks of cranial nerve damage or spinal instability since I am going to get the MRI Brain and CT Brain with contrast done….hopefully.

It is crazy to think how I wound up where I am today. I would have never known that I had this rare tumor if I wasn’t so persistent. It is only because of the palpable mass I found on the back of my neck and the progressively worsening headaches that really pushed me to get my primary care physician (PCP) to order a MRI. I wanted to see if the cervical mass had any relation to my constant headaches. My PCP initially ordered an ultrasound of my neck that came back normal. I wanted to get an MRI before the end of 2016, so I called his office and asked that he order one. The MRI my PCP had ordered was of the face, neck, and orbit (not the head), so not all of the chordoma was visible on the scan. I should have asked for a MRI Brain along with the face/neck/orbit. I said it in an earlier post; a Radiologist missed the chordoma on the CT Brain without contrast that was done in July 2015, after I was complaining of headaches. From what the Neurosurgeon says, the mass on the back of my neck is a benign fibroma and has nothing at all to do with the chordoma they found.

I feel like there has been so much I have needed to get done and so little time to prepare for this long trip. One of the big things was arranging dog and cat sitting. Ozzy needed to be boarded separate because I cannot trust he and Daisy will not get into a fight. My most recent trip to NY to find a neurosurgeon cost me $700 in vet bills as a result of Daisy being possessive over a toy and lashing out at Ozzy. In the end, Daisy required a surgical procedure to clean out an abscessed puncture wound, the placement of 2 drains, lots of staples, and a cone of shame. I could go on a rant about the original arrangements I made for Ozzy while I am gone, but I don’t really want to go there just yet. I am saving that bullshit situation for my tell-all book.

I found last week to be pretty difficult because it was my last week to work before going on disability. I am a product of my parents, and I live to work; Therefore, I am having a really hard time disconnecting from the things I love to do at the hospital. Staying active at work has been a great distraction. Also, I work at the most amazing hospital ever and absolutely, whole-heartedly love, love, love my coworkers. My work family has provided me with a tremendous amount of support, and because of them I have been able to keep my head high while I continue to truck forward on this less than desirable journey.

I cannot believe the outpour of support that I am receiving from people near and far. Now I totally understand how it feels to be on the opposite side of a situation where you do not quite know what to say to someone who is going through something horrendous. What I have found to be the most impactful is when people say, “I am here for you.” It is so fucking simple yet so comforting. Who knew those 5 words held so much power? I also love all of the thoughts and prayers. Hopefully, with all of those wonderful thoughts and prayers being put out in the universe I stand an excellent chance of getting through surgery without any complications or deficits. Plus, I know that numerous peeps praying for me have close connections to G-d….like the fist-bump and secret handshake type of relationships…like VIP status and no waiting in the long line at the trendy club kind of tightness. There is no, no, NO WAYYYYY I would be able to get through this life-altering experience without having people very lovingly kick me in the ass to keep moving forward as well as help carry me along my way. I am beyond grateful, and when the fear of this entire situation begins to creep back in I remind myself that there are countless people standing in my corner while I fight this fight. #sandeestrong

February 22, 2017

Day 54

222

All prepped and ready for surgery. I cannot thank everyone enough for the outpouring of support. I wanted to freak out several times yesterday during my very long day of pre-op, but my phone kept going off with countless text messages and phone calls from my friends and family reaching out to send an encouraging message or heart-felt prayer. Y’all have really kept me sane through this very trying time.

I am super scared and wish this was just an awful dream. I was hoping that after the Neurosurgeon and ENT reviewed my CT and MRI yesterday they would come back saying “just kidding”….what we really see is a piece of Kleenex you sucked up into your brain. Well, that was not the case. Instead, this morning I learned that the tumor is wrapped around Cranial Nerve XI. This has been affecting my tongue movement, and it is going to get worse before it gets better. No one is allowed to make fun of me for drooling or being a sloppy eater for the next several months. Also, when I slur and spit on you when we talk just remember it was all due to a tumor.

Again, thank you so very much for helping me along the way. I could not have done it with out you.

Ok, gotta go now. Time to remove this fucking tumor.

March 8, 2017

Day 68

I was pretty much losing my mind in pre-op just prior to surgery. I did not know if I was supposed to say goodbye to the world (in a Sandee, super-dramatic manner, but who the hell knew what could happen). I didn’t know if I needed to make sure that everyone knew how much they meant to me. I had to review my living will and power of attorney with my mom. She needed to have the copy of my requests. It was important to discuss with her who was entitled to my entire shoe collection and my antique purple couch as well as all of my artwork and other belongings. Most importantly, I needed to talk about what was to happen with my puppies, kitties, tarantulas, and fish. It was imperative that she knew exactly what needed to be done in case something was to happen during surgery. I was just terrified. I cried while I was being wheeled back into the operating room and transferred from the gurney to the operating table. Suddenly, down from the sky appeared this magical oxygen mask that was applied to my face. I heard an angel say, “Just take some nice deep breaths”…aaannnd, then I was out.

The surgery took 11 hours to complete. It is crazy to think that it took approximately 6 hours to actually get past my nasal cavity, drill through my skull and very meticulously work the instruments past the pituitary gland. Actually, any contact with my pituitary gland could set off a series of possible negative effects that could stimulate the gland and potentially have an adverse impact during the surgery.

As it turns out, I had a few blood transfusions during the surgery. The chordoma was pressed up on the left PICA artery and the basilar artery. In laymen’s terms this means that there was a high risk of excessive bleeding due to the arteries being in the path of the tumor. I must say that I am grateful that the surgeons involved did not suck down 5 Redbulls, a handful of No-Doz, or even a few quadruple espresso shot venti chocho-mocha-lattes prior to working their way around these very tiny and important oxygen enriched arteries necessary to keep the brain functioning. A little arterial bleed had less of an impact than a cracked- out, shaky surgeon blurting out something like, “oopsie-doodles….we’ve got a bleeder!!!!”

The chordoma had branched its way out and spread to my cranial nerve XI (causing tongue weakness) and optic nerve VI (that caused my eyes to cross and created double vision). I was immediately put on steroids to decrease the pressure in an effort to reduce the swelling and correct my double vision while I worked to strengthen my eye weakness. I must admit that the thought of a bedazzled eye patch crossed my mind on several occasions. It could potentially be a cool addition to my already 1:1,000,000 situation. The reality is that I would much rather not have double vision and strain to see any more than necessary. But come on….how cool would it be to rock a fancy-schmancy eye patch to match my outfits????

During surgery they needed to use some skin to graft over the area where the chordoma was removed. The Neurosurgeon chose to cut down the length of my right tattooed thigh (sorry Isaac, the tattoo may need a slight touch up) to get to the fascia which was necessary to patch my open, leaky spine. They did the best they could with stitching my leg back up, but it currently looks a little lumpy. A special drain was placed under the skin to assist in the healing process, too.

The next several days after surgery were a total haze. I was in and out of consciousness, and I can only remember bits and pieces of what took place. Prior to surgery I made sure to inform the anesthesiologist that I am not one to tolerate general anesthetic very well. I let him know that I tend to get sick to my stomach, and he seemed to take that into consideration and do whatever he felt was necessary to prevent me from heaving up who knows what right after surgery. I was especially concerned since vomiting after spinal cord and brain surgery did not seem like something I really wanted to experience. The last thing I wanted to do was wretch and possibly blow the graft right off of my spine. Unfortunately in my case, once a barfer always a barfer; whatever the anesthesiologist did was ineffective, so I have this very vague memory of throwing up all over myself once I made it to the ICU.

Another foggy memory I have is of someone from Speech Therapy coming in very early on after surgery to do a swallow study on me. I had this bulky packing with bandages taped under my nose to catch all of the drainage and possible CSF fluid leaking from my nostrils. I recall this person telling me to try to take a drink and swallow, but I failed miserably. Instead of having the liquid go down my throat, an excessive amount of blood exploded out of my nose and mouth. I recall the RN yelling for the doctor, and I started to fade out as they began transfusing a few units of PRBCs (packed red blood cells) and plasma.

The other super fun thing that they had to do during surgery was place a special drain in my lower back to help pull off any excess spinal fluid leaking from where the chordoma was removed. The really cool thing about that drain was how it managed to find its way right on top of a nerve in my lumbar spine that caused the most intense case of sciatica. I have nerve pain shooting from the central portion of my lower back all the way down both legs. Initially the ICU RN was impressed that I was ready to get out of bed immediately and start walking. Well, the walking and movement did not stop for days. Once he/she realized that I was screaming in utter agony due to the shooting pain, they were probably not all that thrilled about the fact that I could not sit still at all. There was nothing that could be done to ease the horrific discomfort I was having. They had to leave the drain in to pull off any excess cerebral spinal fluid, so I remained in that condition for 5 days before the lumbar drain could be taken out and removed from the nerve it was compressing on.

This whole experience has been so exhausting. It is crazy to think that the littlest things wear me out. I am so behind on journaling and even writing this has taken me a day and a few naps in between. Trust me, there is so much more to my experience, but I will just have to share a little at a time. #sandeestrong

March 10, 2017

Day 70

I was re-admitted to the hospital a few days back and discharged again today. Notice how I said “again” from the hospital. I managed to have a lil set back along the way, but minor setbacks are nothing I cannot handle and something I will address at a later journal entry. The main point is that there really is no better feeling than knowing that I do not have to sleep on an uncomfortable plastic mattress with shitty plastic pillows another night.

Initially I was discharged from the hospital on 2/27. It was such a weird feeling when I was being discharged because I was feeling so weak and out of it. In the hospital, Fentanyl was my BFF. It was the wonder drug that took away any severe head and neck pain I was having (other than the lumbar drain compressing a nerve that nothing seemed to make better).

Anywhooooo, the trip back to our make-shift home away from home wore me out, but what I found the most difficult was trying to get comfortable. I had to try and sleep at a 30 degree angle. Personally, I am a side sleeper, and I love to nuzzle my head down flat while mushing it into a fluffy lil pillow. The 30 degree angle thing was just such a difficult sleeping position, and I had a very hard time getting comfortable. My mom would consistency come in and try to reposition me because I would squish myself down off of the angle, so I was always pushed to maintain that 30 degree angle to keep everything draining from the trans nasal spinal surgery.

My mom and sister, Laurie, were like a tag-team of Bob Vila from This Old House. They might have well busted out their tool belts with tape measure and power tools in an attempt to construct the perfect pillow fortress to keep my head from slipping out of that 30 degree angle. They made it their mission to keep my head where it needed to be. I am surprised they didn’t decide to use a nail gun, gorilla glue, and/or zip ties to keep me in the specific position that was ordered by the Neurosurgeon.

I am beyond exhausted right now, and even pecking at the computer keyboard takes a lot out of me. I will continue to share my journey after some rest.

March 12, 2017

Day 72

The headaches post-surgery have been a killer. I would like to say that I am use to having headaches considering that they have been occurring since at least 2015, but these headaches are much different than the ones I was having before the Chordoma surgery.

On March 3, I was in excruciating pain. The intensity of the headaches and neck pain were unbearable, and I got a little nervous when I could not move my head in any direction….especially chin-to-chest. I was not having fevers, but I knew that one of the main concerns after the kind of surgery I went through was meningitis.

I was also still having this disgusting nasal discharge that was draining into a dressing that was taped under my nose. I had to change the dressing every few hours because it just kept on leaking. I was telling myself that the muscles in the back of my neck kept locking up on me because it had to do with regaining my muscle strength. Unfortunately, one cannot be too sure post brain and spinal surgery, so I called my doctor’s office to discuss the issues I was having in regards to my head and neck. I was sure that I was having muscle spasms or something called torticollis, and I thought that a muscle relaxer or anxiolytic may help loosen things up. Regardless, my doctor wanted me to go get checked out in the Emergency Department.

The ED visit was no quick in and out process. We spent hours in there getting Cat Scans, blood work, an X-ray, meds, and an evaluation by the ENT MD to check out the drainage coming from my nose. In the end, I was sent home being diagnosed with…..just what I thought, torticollis.

The ENT MD wanted to make sure that I was continuing with my home antibiotics and he wanted to ensure that I kept my follow up appointment with him the following week. I wish I could say that the Valium and antibiotics held me over until the next appointment, but the pain continued. I did my very best to just hang in there and just keep improving my health day by day.

It is really empowering knowing that there has been so much support and so many prayers coming my way. My thoughts were that I was to keep on truckin’ and get over the minor hump. Pain-shmain…..it’s never held me back before.

March 14, 2014

Day 74

I would love to say that the ED visit on March 3, where I was diagnosed with a neck muscle spasm was the end-all of the Sandee Saga, but come on peeps. My story with this very rare, nutz-o, who the hell gets a Chordoma experience did not quite end there. Obviously, I was in need of performing countless more high-kicks, Judo Chops, and my ultra-special Kung Fu moves on this friggin Chordoma crap in order to make all of those who purchased #Sandee Strong t-shirts feel as if they got their money’s worth.

On Sunday, March 5, I made my mom take me back to the ED. The valium was not cutting through the intense pain, and I had this feeling that there might be something more going on aside from just a neck spasm. I felt bad making my mom take me back to the ED for a day-long venture because who the hell likes to go to the ED unless you are there to save lives or earn a paycheck?

The morning I was headed out to the ED, my brother offered me a mint. A mint…He thought I needed a mint? I asked if my breath was that bad, and he told me that it was horrendous. He apologized and said that he did not want to hurt my feelings, but a garbage bin smelled better that my breath. Ok, he really didn’t say I had garbage bin breath, but I read it on his face. As it turns out, not one of my family members had the guts, or courtesy, to tell me that I had ass breath. Now, to most people it may seem just plain yucky to have foul smelling breath, but to an RN or someone in the medical field it is extremely concerning because it can be an indicator of an infection. I did not feel well at all, and the disgusting, smelly drainage from my nose was enough for me to insist on get an Uber ride back to the hospital to be seen again.

After entering the ED, we were brought back immediately to a room. I informed the ED MD that all of the tests and scans had been done a few days prior, but I had this feeling that the excessive, foul smelling nasal drainage and continuing headaches were potentially something more concerning. The ED MD called the ENT MD to have him come and evaluate me since all of the tests had been done just days before. The only thing they wanted to obtain was some blood tests to compare the levels to the ones from a few days prior.

Well, it did not take long for the ENT Resident to come in and perform his exam. After he ever so gently shoved a little camera through my nose possibly to look at my brain for a little peeksie, he gave me this look of, “what the hell did I just see in there?” He wiped the camera clean, and said he would return shortly with the ENT Attending who was the actual ENT specialist. It did not take long for them to return with a team of MDs, and this time they suctioned the crap out of my nose, slide the camera back in, and let me know that they needed to bring me back in for surgery.

As it turns out, this skin graft they made through my nose was necrotic and non-viable. This happened to be a flap covering the area of my spine that was made with the skin from my thigh. The site was also leaking spinal fluid (hence the severe headaches), so they needed to get in there and fix it. Ggggrrrreat! Truly, there was no opposition to the round two surgery that was about to take place. I wanted them to get in there STAT and repair whatever was keeping me from feeling better, truckin’ forward.

The second surgery was so different and much easier than the first one. I remember waking up grateful that I did not have a drain in my lumbar spine or in my thigh. The team just needed to get up in my shnoz and clean up the transplanted tissue, snipping off what was not taking and repairing what they were able to salvage.

I wound up spending 5 more days in the hospital. I still had the horrible headaches, but the nasal drainage was down to a minimum. As it turned I had a raging infection. I was extremely surprised when I was told about the super-bugs that decided to take us residence in my head. I was also informed that I was going to get a PICC Line inserted in my arm because I was going to have to give myself 6 antibiotic infusions a day, each infusion running over 2 hours, and doing them for the next 6 weeks.

I remained Sandee Strong through the whole ordeal, and I considered all of this a minor setback. After getting the PICC Line inserted on March 10, I was ready to go back to our make-shift home away from home. I really did get the best care in the hospital, but there is nothing better than clean sheets on a big bed with fluffy pillows…and presents. There were boxes and boxes of presents waiting to welcome me home.

March 17, 2017

Day 77

Today I was officially given the final blessing by my Neurosurgeon to get the hell outta dodge….or Pittsburgh. Whoooo-friggin-rayyyy! The follow up visit was very informative, and I was glad to finally hear about the biopsy results from my clival chordoma. It turns out that Dr. Gardner thinks that I am potentially a 1%’er. What that means is that after looking at all of the tumor cells he could only find 1% malignant, active, and slow-growing. The other tumor cells were just helping to invade space and compress on my brain. The problem with my tumor was that it grew these finger-like projections that wrapped themselves around arteries, cranial nerves, and ligaments. Dr. Gardner “thinks” that he was able to surgically remove all of the active cells. He cannot be 100% sure since the tumor had spread out in multiple directions instead of just being a big blob on my spine.

We had a good discussion about the need for Proton Beam Radiation. He recommended that I consider going through with the treatments, but personally I do NOT want to expose myself to radiation if it is absolutely not necessary. I have some time to think about it and make a decision before my follow-up in a month. He also ordered a full spinal MRI and a skull based MRI to be done the day before my next visit. Has anyone ever spent 4 hours in a noisy, white, narrow tube with a cage on their face? Well, I am not too sure how that one is going to go over. I guess now would be the best time to start working my way up to a good and long, 4 hour meditation session.

Earlier this week I also saw my ENT Specialist, Dr. Snyderman. I sat in this exam chair while Laurie, my sister, sat in another chair where my view of her was blocked by a large TV screen facing away from me. If I wanted to have a conversation with her I had to lean forward a little bit, so I could see her face when we talked.

Dr. Snyderman came in the room to do his exam in hopes that I would be given his blessing to fly home. He put on his gloves and busted out that fancy, straw-sized, light up camera that I love so much; especially when it is shoved up into my brains. As it turns out, in his exam room up on that big ol’ television screen was the viewing of, “What on earth can we find inside Sandee’s nostrils today?” Laurie was obviously very interested in the show, so she leaned forward to look at the screen, and this put her face right in my view. I’ll be damned if somehow she was never taught anything about a poker face. She does not quite understand how to make her face stand still while her mind screams out “Holy Crap! What the fuck am I looking at?” I’m not sure why I didn’t look away from her, but she made this face that was similar to either eating sour lemons or something very, very non-delicious. She looked disturbed. I felt disturbed. It was definitely a little concerning, but in the end he cleaned out my pipes and said “It’s looking good”.

Before we left, I needed to mention to Dr. Snyderman that I was a little concerned about my thigh that they had filleted open to take fascia that was necessary to graft on my spine.My thigh was pretty swollen and looked a lot like a super muscular Popeye leg. I could press around the incision and feel a huge pocket of fluid underneath the skin. When I was initially in the hospital, they had a drain placed in my right thigh. The drain wasn in my leg as long as possible and removed before I was discharged home. Unfortunately, over the last few weeks it managed to fill up with fluid….a lot of fluid. Dr. Snyderman wanted to drain it, so he gave me an option to inject numbing medication into my leg first, or just stick a needle in me and drain off the fluid. Regardless, I was going to get poked, so “just drain it”.

As I leaned into a position to make it easy for him to do the deed, I again made facial contact with my sister (bad idea). The needle went in, and her non-poker face made its way into a jaw-dropping, wide-eye expression. Holy hell, what else in the room could I look at and get my mind off of what was currently taking place? He had to detach the needle from his 20 ml syringe several times because there was a significant amount of fluid that had built up. He wound up draining out 160ml of fluid. In the meantime, I kept scanning the room trying to find something visual to take my mind off of the procedure aside from my sister. Somehow I kept looking over at Laurie’s facial expression. Needless to say, by the time my leg shrank back to a somewhat normal size I became sweaty, light-headed, pasty, and needed to fan myself with some random magazine Laurie found somewhere in the room. The experience sucked…literally and physically.

Since that fun experience, my leg has managed to accumulate another big pocket of fluid. No more non-poker facial expressions puleeze! I have decided that I am waiting to get back to California before I have my Popeye leg drained again. I am happy to say that I will be returning home next week. I cannot wait to see my puppies and kitties and fish and tarantulas.

April 1, 2017

Day 92

I have totally slacked on journaling since my venture back from Pittsburgh. After I was given the blessings from my Neurosurgeon and ENT to vacate the state, I made a pit stop at my home in Texas for a few days to be with my family. The last time my dad saw me I was writhing in pain due to the fact a lumbar drain (removing excess CSF fluid) was compressing a nerve in my lower back. I have very little recollection of the ICU, but I do recall the extreme nerve pain shooting from my lower back down both legs and being unable to sit still because of it. For some reason movement felt better than lying down. At the time, the Neurosurgeon could not give me enough pain meds to knock me out or adequately control the pain because the RN had to do hourly neurological checks on me to make sure I was alert, oriented, and not having any increasing cranial nerve damage. Going to Texas gave me the opportunity to show my dad that I was doing much better than the last time he saw me….plus I love to be around my family.

The trek to Texas was quite the journey. My sister, Laurie, was in charge of getting us ready to head home. She helped me pack and organize (I was slightly high maintenance) my one month worth of belongings packed in a suitcase the size of a large dwarf, all of the amazing gifts that I received from so many loving friends and family that we (SHE) had to box up, my little Luna who was amazing support for everyone throughout the trip, all of my IV medication (42 bags of 250ml antibiotics to be exact) that needed to be carried on the plane in a cooler, and did I already say meeeeee? Unfortunately I can only lift 10lbs, so I was pretty much worthless. She might as well have just thrown me over her shoulder to carry me around at that time, but she was too busy schlepping my dog and all of my other crap. Believe it or not, she did not even pull a muscle with all of that lifting, and by the time we made it to Texas she was in need of some major relaxation and rest far, far away from me.

A very special and amazing friend of mine met me in Texas to help me travel back to California. I wish I could say I was a ball of energetic fun, but that would be far from the truth. I would have loved to sight see, go on an adventure, or do something exciting; Unfortunately, I was not capable of doing much more than eating and sleeping. The flight back to California was kind of rough. My ears started to get really clogged up and my sinuses were not draining; therefore, I thought my ears were going to implode on the flight. Since the Neurosurgeon went trans-nasal to perform the surgery, my sinuses were still healing. I was told not to blow my nose, and to be careful when I sneeze. I am assuming he did not want me to blow my flap off that they worked so hard (two surgeries to be exact) to get to adhere in my skull.

Recovery has been an ass-kicker, and I get gnarly headaches starting from the back of my neck, I have weakness and blurred vision in my left eye, and I tire out extremely quick. My Neurosurgeon had to cut some of the tendons in the back of my neck because the tumor was wrapped around them, so I am in need of building muscle strength in my neck to compensate for the severed tendons. I am proud to say that I can finally move my head from side to side and get my chin a few inches from each shoulder. Did I happen to mention the onset of acne that I am experiencing as a side effect from the high doses of steroids they were giving me in the hospital? I know I should be happy that cranial nerve VI is much better and my eyes are no longer crossed thanks to the steroid use, but seriously…..friggin acne?!!?? I will never deny my vanity, and I work at trying to look good and fresh. I have no desire to have skin like a hormonal 14 year old. This acne can get the hell off of my face immediately!!!

I am use to being extremely productive and full of creative thinking. These days my head feels like a brick, and taking a shower then getting dressed in the morning tires me out. Needless to say, I have become Queen Napper. I am not use to downtime, inactivity, and not being on the run with a ga-zillion things to do…I miss that. First thing I saw when I got back to California were these strand, café lights in the front of my house stretching from a palm tree connecting to my home that need to be readjusted. I continue to think long and hard about how I can get my 17ft ladder to the front of my house without lifting more than 10lbs.

I am very grateful to have loving, generous, patient, and selfless people in my life. The outpour of support that I continue to receive is truly beyond incredible. I finally had a chance to look at my Facebook page about a week ago and got extremely overwhelmed. I had no idea how much people really cared about me….it truly is beyond words. Also, I do not think that people realize just how much the comments, cards, flowers, and gifts mean to not only me, but my entire family. This whole experience has been incredibly rough on them. They have had to sit by and watch what I had to endure as well as support me through the rough part of my recovery process. With the 11 hour surgery and who the hell knows how much anesthetic I received, I only remember bits and pieces of the first 8 days. The incredible amount of support I receive has been impactful to my mom, dad, brother, and sisters. Throughout this entire experience dealing with my diagnosis and surgical removal of the chordoma, it has really helped keep them strong….Sandee Strong.

April 24, 2017

Day 115

Due to my lack of journaling, we can all just assume that I am in avoidance. I am avoiding the fact that I still have a 1% chance of having chordoma cells floating around somewhere near the base of my skull, and I am trying real hard to pretend that proton beam radiation is NOT in my near future. I want my life back, and I do not want to deal with this crap anymore.

Last Wednesday I finally had the PICC Line taken out. For those who are unfamiliar with a PICC line, it is a peripherally inserted central catheter, or a very long catheter placed in a larger vein at the inside of my arm traveling to my chest where the antibiotics can get right to my heart. I had been doing IV antibiotic infusions since I was discharged from the hospital on March 10, after the second, unplanned surgery. It was insanely time consuming having to spend 9 hours of my day hooked up to an IV pump. I started my infusions at 5am and complete the last infusion of the day at 1am. The antibiotics that were pumping into my system needed to kill off the resistant bacterial infection that I had somehow acquired. I was initially doing 6 IV infusions a day until my blood work came back showing that I had renal insufficiency and nephrotoxicity. The Infectious Disease MD discontinued one of the meds I was taking, so it was much appreciated to get a few extra hours of rest each day.

I have been trying to stay busy and managing to stay active doing who the hell knows what. I have found lots of tasks to occupy my time and avoid sitting still too much. I have been careful not to overexert myself and remind myself that I am still healing from 2 major surgeries. Well, I either remind myself to take it easy, or I get winded and out of breath which puts me in check. Next week I fly back to Pittsburgh for my follow up visits with the Neurosurgeon, ENT, and Infectious Disease Specialist to get cleared to go back to work and get back to my exercise regimen.

Unfortunately, all of this downtime has given me the opportunity to think, or overthink, or think excessively, or let my thoughts be consumed about things that I continue to think about….is this a woman thing? I don’t know….quite possibly, I think? Maybe it is just a ME thing. Maybe it is just “crazy brain” where I get stuck in my head, caught up in random thoughts that lead me to other thoughts that lead me to insecurities or if I am doing the right things or whether I am living an optimal life and then I question my self-worth….Well SHIT!!! To be honest, it is probably a combination of crazy brain and PMS that have gotten me spiraling.

Yes, I could use some minor life-tweaks, and yes, I could be living a more optimal life. I am grateful that I am willing to work on evolving, but damn it, I have too much time on my hands. Pittsburgh is next week, and I will be able to discuss my options with the Neurosurgeon at that time. Having to do 45 back-to-back sessions of radiation just does not sound very appealing to me, but if it is what I have to do so be it. Sandee-Mother-Truckin-Strong!

April 24, 2017

Day 115

Due to my lack of journaling, we can all just assume that I am in avoidance. I am avoiding the fact that I still have a 1% chance of having chordoma cells floating around somewhere near the base of my skull, and I am trying real hard to pretend that proton beam radiation is NOT in my near future. I want my life back, and I do not want to deal with this crap anymore.

Last Wednesday I finally had the PICC Line taken out. For those who are unfamiliar with a PICC line, it is a peripherally inserted central catheter, or a very long catheter placed in a larger vein at the inside of my arm traveling to my chest where the antibiotics can get right to my heart. I had been doing IV antibiotic infusions since I was discharged from the hospital on March 10, after the second, unplanned surgery. It was insanely time consuming having to spend 9 hours of my day hooked up to an IV pump. I started my infusions at 5am and completed the last infusion of the day at 1am. The antibiotics that were pumping into my system needed to kill off the resistant bacterial infection that I had somehow acquired. I was initially doing 6 IV infusions a day until my blood work came back showing that I had renal insufficiency and nephrotoxicity. The Infectious Disease MD discontinued one of the meds I was taking, so it was much appreciated to get a few extra hours of rest each day.

I have been trying to stay busy and managing to stay active doing who the hell knows what. I have found lots of tasks to occupy my time and avoid sitting still too much. I have been careful not to overexert myself and remind myself that I am still healing from 2 major surgeries. Well, I either remind myself to take it easy, or I get winded which puts me in check. Next week I fly back to Pittsburgh for my follow up visits with the Neurosurgeon, ENT, and Infectious Disease Specialist to get cleared to go back to work and get back to my exercise regimen.

Unfortunately, all of this downtime has given me the opportunity to think, or overthink, or think excessively, or let my thoughts be consumed about things that I continue to think about….is this a woman thing? I don’t know….quite possibly, I think? Maybe it is just a ME thing. Maybe it is just “crazy brain” where I get stuck in my head, caught up in random thoughts that lead me to other thoughts that lead me to insecurities or if I am doing the right things or whether I am living an optimal life and then I question my self-worth….Well SHIT!!! To be honest, it is probably a combination of crazy brain and PMS that have gotten me spiraling.

Yes, I could use some minor life-tweaks, and yes, I could be living a more optimal life. I am grateful that I am willing to work on evolving, but damn it, I have too much time on my hands. Pittsburgh is next week, and I will be able to discuss my options with the Neurosurgeon at that time. Having to do 45 back-to-back sessions of radiation just does not sound very appealing to me, but if it is what I have to do so be it. Sandee-Mother-Truckin-Strong!

April 1, 2017

Day 92

I have totally slacked on journaling since my venture back from Pittsburgh. After I was given the blessings from my Neurosurgeon and ENT to vacate the state, I made a pit stop at my home in Texas for a few days to be with my family. The last time my dad saw me I was writhing in pain due to the fact a lumbar drain (removing excess CSF fluid) was compressing a nerve in my lower back. I have very little recollection of the ICU, but I do recall the extreme nerve pain shooting from my lower back down both legs and being unable to sit still because of it. For some reason movement felt better than lying down. At the time, the Neurosurgeon could not give me enough pain meds to knock me out or adequately control the pain because the RN had to do hourly neurological checks on me to make sure I was alert, oriented, and not having any increasing cranial nerve damage. Going to Texas gave me the opportunity to show my dad that I was doing much better than the last time he saw me….plus I love to be around my family.

The trek to Texas was quite the journey. My sister, Laurie, was in charge of getting us ready to head home. She helped me pack and organize (I was slightly high maintenance) my one month worth of belongings packed in a suitcase the size of a large dwarf, all of the amazing gifts that I received from so many loving friends and family that we (SHE) had to box up, my little Luna who was amazing support for everyone throughout the trip, all of my IV medication (42 bags of 250ml antibiotics to be exact) that needed to be carried on the plane in a cooler, and did I already say meeeeee? Unfortunately I can only lift 10lbs, so I was pretty much worthless. She might as well have just thrown me over her shoulder to carry me around at that time, but she was too busy schlepping my dog and all of my other crap. Believe it or not, she did not even pull a muscle with all of that lifting, and by the time we made it to Texas she was in need of some major relaxation and rest far, far away from me.

Someone needed to fly out help me travel back to California. I wish I could say I was a ball of energetic fun, but that would be far from the truth. I would have loved to sight see, go on an adventure, or do something exciting; Unfortunately, I was not capable of doing much more than eating and sleeping. The flight back to California was kind of rough. My ears started to get really clogged up and my sinuses were not draining; therefore, I thought my ears were going to implode on the flight. Since the Neurosurgeon went trans-nasal to perform the surgery, my sinuses were still healing. I was told not to blow my nose, and to be careful when I sneeze. I am assuming he did not want me to blow my flap off that they worked so hard (two surgeries to be exact) to get to adhere in my skull.

Recovery has been an ass-kicker, and I get gnarly headaches starting from the back of my neck, I have weakness and blurred vision in my left eye, and I tire out extremely quick. My Neurosurgeon had to cut some of the tendons in the back of my neck because the tumor was wrapped around them, so I am in need of building muscle strength in my neck to compensate for the severed tendons. I am proud to say that I can finally move my head from side to side and get my chin a few inches from each shoulder. Did I happen to mention the onset of acne that I am experiencing as a side effect from the high doses of steroids they were giving me in the hospital? I know I should be happy that cranial nerve VI is much better and my eyes are no longer crossed thanks to the steroid use, but seriously…..friggin acne?!!?? I will never deny my vanity, and I work at trying to look good and fresh. I have no desire to have skin like a hormonal 14 year old. This acne can get the hell off of my face immediately!!!

I am use to being extremely productive and full of creative thinking. These days my head feels like a brick, and taking a shower then getting dressed in the morning tires me out. Needless to say, I have become Queen Napper. I am not use to downtime, inactivity, and not being on the run with a ga-zillion things to do…I miss that. First thing I saw when I got back to California were these strand, café lights in the front of my house stretching from a palm tree connecting to my home that need to be readjusted. I continue to think long and hard about how I can get my 17ft ladder to the front of my house without lifting more than 10lbs.

I am very grateful to have loving, generous, patient, and selfless people in my life. The outpour of support that I continue to receive is truly beyond incredible. I finally had a chance to look at my Facebook page about a week ago and got extremely overwhelmed. I had no idea how much people really cared about me….it truly is beyond words. Also, I do not think that people realize just how much the comments, cards, flowers, and gifts mean to not only me, but my entire family. This whole experience has been incredibly rough on them. They have had to sit by and watch what I had to endure as well as support me through the rough part of my recovery process. With the 11 hour surgery and who the hell knows how much anesthetic I received, I only remember bits and pieces of the first 8 days. The incredible amount of support I receive has been impactful to my mom, dad, brother, and sisters. Throughout this entire experience dealing with my diagnosis and surgical removal of the chordoma, it has really helped keep them strong….Sandee Strong.

March 17, 2017

Day 77

Today I was officially given the final blessing by my Neurosurgeon to get the hell outta dodge….or Pittsburgh. Whoooo-friggin-rayyyy! The follow up visit was very informative, and I was glad to finally hear about the biopsy results from my clival chordoma. It turns out that Dr. Gardner thinks that I am potentially a 1%’er. What that means is that after looking at all of the tumor cells he could only find 1% malignant, active, and slow-growing. The other tumor cells were just helping to invade space and compress on my brain. The problem with my tumor was that it grew these finger-like projections that wrapped themselves around arteries, cranial nerves, and ligaments. Dr. Gardner “thinks” that he was able to surgically remove all of the active cells. He cannot be 100% sure since the tumor had spread out in multiple directions instead of just being a big blob on my spine.

We had a good discussion about the need for Proton Beam Radiation. He recommended that I consider going through with the treatments, but personally I do NOT want to expose myself to radiation if it is absolutely not necessary. I have some time to think about it and make a decision before my follow-up in a month. He also ordered a full spinal MRI and a skull based MRI to be done the day before my next visit. Has anyone ever spent 4 hours in a noisy, white, narrow tube with a cage on their face? Well, I am not too sure how that one is going to go over. I guess now would be the best time to start working my way up to a good and long, 4 hour meditation session.

Earlier this week I also saw my ENT Specialist, Dr. Snyderman. I sat in this exam chair while Laurie, my sister, sat in another chair where my view of her was blocked by a large TV screen facing away from me. If I wanted to have a conversation with her I had to lean forward a little bit, so I could see her face when we talked.

Dr. Snyderman came in the room to do his exam in hopes that I would be given his blessing to fly home. He put on his gloves and busted out that fancy, straw-sized, light up camera that I love so much; especially when it is shoved up into my brains. As it turns out, in his exam room up on that big ol’ television screen was the viewing of, “What on earth can we find inside Sandee’s nostrils today?” Laurie was obviously very interested in the show, so she leaned forward to look at the screen, and this put her face right in my view. I’ll be damned if somehow she was never taught anything about a poker face. She does not quite understand how to make her face stand still while her mind screams out “Holy Crap! What the fuck am I looking at?” I’m not sure why I didn’t look away from her, but she made this face that was similar to either eating sour lemons or something very, very non-delicious. She looked disturbed. I felt disturbed. It was definitely a little concerning, but in the end he cleaned out my pipes and said “It’s looking good”.

Before we left, I needed to mention to Dr. Snyderman that I was a little concerned about my thigh that they had filleted open to take fascia that was necessary to graft on my spine.My thigh was pretty swollen and looked a lot like a super muscular Popeye leg. I could press around the incision and feel a huge pocket of fluid underneath the skin. When I was initially in the hospital, they had a drain placed in my right thigh. The drain wasn in my leg as long as possible and removed before I was discharged home. Unfortunately, over the last few weeks it managed to fill up with fluid….a lot of fluid. Dr. Snyderman wanted to drain it, so he gave me an option to inject numbing medication into my leg first, or just stick a needle in me and drain off the fluid. Regardless, I was going to get poked, so “just drain it”.

As I leaned into a position to make it easy for him to do the deed, I again made facial contact with my sister (bad idea). The needle went in, and her non-poker face made its way into a jaw-dropping, wide-eye expression. Holy hell, what else in the room could I look at and get my mind off of what was currently taking place? He had to detach the needle from his 20 ml syringe several times because there was a significant amount of fluid that had built up. He wound up draining out 160ml of fluid. In the meantime, I kept scanning the room trying to find something visual to take my mind off of the procedure aside from my sister. Somehow I kept looking over at Laurie’s facial expression. Needless to say, by the time my leg shrank back to a somewhat normal size I became sweaty, light-headed, pasty, and needed to fan myself with some random magazine Laurie found somewhere in the room. The experience sucked…literally and physically.

Since that fun experience, my leg has managed to accumulate another big pocket of fluid. No more non-poker facial expressions puleeze! I have decided that I am waiting to get back to California before I have my Popeye leg drained again. I am happy to say that I will be returning home next week. I cannot wait to see my puppies and kitties and fish and tarantulas.