2 months after chemotherapy

Young mother Jenny Gray and her battle with Osteosarcoma

(Originally drafted August 29,2017)

Pictured is my good friend Jenny Gray (Mick). Jenny and I went to Bryan Elementary School together and graduated Lake City School in 2003. She is currently in a battle of her own at the end of her fourth round of chemo (8th stint of inpatient).

Yesterday was a tough day for Jenny. Her mother was originally diagnosed with a Stage 2 mixed Glioma Astrocytoma in 1993. After 3 brain surgeries between Kootenai-Seattle she was diagnosed with a Grade 3 Oligodendroglioma and had her 4th brain surgery where I receive my treatment in Phoenix at Barrow Neurological Center. She passed away September 7, 2011 after a 18 year battle with brain cancer. 

I want to this VERY CLEAR. I would NEVER post anything about anyone without their permission and prior approval. 

Jenny started college at Montana State University. After a semester at MSU, she took a semester off and moved to Arizona and just worked to save money. She came back to CdA and played soccer at NIC for a year. Later transferred to University of Idaho, where she studied Natural Resource Management. Graduating with her B.S. in 2008. She went back to U of I for her Master's degree, graduating in 2014 with a M.S. in Environmental Science.

Jenny worked for the Forest Service from 2003-2014, doing trails/recreation work and Wildland firefighting.

In spring of 2015, while training for a half marathon, her left knee began to hurt. She went to a physical therapist who diagnosed it as a strained MCL. She took a couple months off from running and that fixed the problem with her left knee. Upon her return to running during the summer of 2015, her right knee started to hurt. It felt similar to what she felt in her left a few months prior, so she just thought it was the same problem, but different knee.

After several months of her right knee not feeling better, Jenny went to her doctor. The Doctor thought it was Pes Anserine Bursitis and recommended she take the winter off from running, skiing, etc. and that she do some stretches her Doctor recommended. Jenny did this and it seemed to help a bit, but by late spring and summer of 2016, the pain was getting worse.

Having been an athlete her entire life and having various small injuries that hurt worse than what she was feeling, Jenny didn't think it was much to worry about other than the fact that it just wouldn't go away. But by late August of 2016 the pain was getting to the point where it hurt just to walk, so she called to get a referral to a physical therapist. The PT work seemed to help for a few weeks and then in late September 2016, the pain intensified tremendously. This was around the time she found out she was pregnant. Looking back now, the doctors think her pregnancy hormones could have accelerated the growth of the tumor and that is why the pain increased so much in September.  

After about a month and a half of PT work, her PT referred her to an Orthopedist because he thought there was something else going on, possibly a torn meniscus. Because she was still in the first trimester of her pregnancy, she did not do any imaging to see what the issue was. Without the imaging, the orthopedist's best guess was also a torn meniscus. She spoke to a radiologist about when it would be safe to do an MRI and he recommended waiting until the 20 week mark of pregnancy. So that is what she did. On December 30, 2016 she went in for the MRI, thinking it would just confirm that she had a torn meniscus. Her Orthopedist called her later that afternoon after he got the radiology report and let her know she had a large tumor in her tibia that they thought was either a Giant Cell Tumor (which is typically benign) or an Osteosarcoma. She underwent a bone biopsy on January 11, 2017 at Sacred Heart in Spokane. The pathology report showed that the tumor was a Stage 2B osteosarcoma (the B relates to the size of the tumor; mine was large, around 11cm L x 5 cm W).

She’s currently in the midst of her fourth round of chemo (each round is 5 weeks long) out of 6 rounds.

February 1, 2017, the day before her 32nd birthday, and at the 24 week mark of her pregnancy, her right leg was amputated just above her knee joint. Typical treatment for Osteosarcoma is to do two full rounds of neo-adjuvant chemo (each round being 5 weeks long) prior to surgery (surgery options are amputation or limb salvage) to see how well the tumor shrinks, then you would have your surgery and several weeks of recovery, followed by 4 more rounds of adjuvant chemo. The chemo used for Osteosarcoma is very harsh and if she had chosen to do neo-adjuvant chemo, they would have lost the baby. They chose to delay chemo until their son was born, so she’s getting all 6 rounds of chemo in a row now.

The doctors wanted to induce her early to get her started on chemo ASAP. Jenny was induced at 34 1/2 weeks gestation and Dillon was born on April 10, 2017. He spent 8 days in the NICU at Sacred Heart and is a happy, healthy baby.

Because her Mom and maternal Grandfather both had brain cancer, she’s always wondered if there was a genetic link. Her Mom asked every Doctor she saw over her 18 year battle if brain cancer was hereditary and they all said there was no conclusive evidence that it was. Upon her diagnosis with Osteosarcoma, she began doing a ton of research and came across a rare genetic syndrome called Li-Fraumeni Syndrome. The core cancers seen with this syndrome include brain, pre-menopausal breast, Osteosarcoma, soft tissue sarcomas, and Adrenocortical Carcinoma. Without getting into too much detail, people with this syndrome have a very high risk of cancer, especially at a young age. This was alarming to learn about, especially given that her and her husband had never heard of it in all the years that her Mom dealt with her cancer and not one Doctor had ever mentioned it to her. Long story short, after hearing about her family history, Jenny’s Oncologist said she should definitely be tested for LFS. Jenny tested positive for LFS in June of 2017. LFS is an autosomal dominant mutation of the tp53 gene (a very important tumor suppressant gene). If you have LFS, there is a 50% chance of passing it to your children.

They had Dillon tested for LFS in August and unfortunately his results came back positive as well. They until Dillon is older to do the MRIs. We're meeting with a pediatric oncologist soon who will oversee Dillon's screening.

Pictured above is Jenny and her son Dillon September 25,2017 after her last round of chemotherapy.

If you would like to find out more or help you can donate at https://www.lfsassociation.org

My last day of chemotherapy (for now)

As Im writing this today, its has been 234 days since my diagnosis. It is also the last day I will be taking my chemotherapy. As some of you know, my last MRI on 07/10/2017 showed GREAT healing. But Tyler, you said you're done with chemo, what do mean by "for now"? I would pay attention to the last minute of my meeting with my Oncologist in this video. I am always cautiously optimistic. 

MRI with Dr. Lynn Ashby Oncologist (Facebook Public VIDEO) 7/10/2017 

Before I get into those specifics, I want to talk more about my chemotherapy as different forms of cancer use different treatments. Below is a link to the drug used to treat my specific type of brain cancer.

Temozolomide

So whats it like taking this? First of all, I am not a Doctor, I can only share my experience and if you are about to take this I strongly recommend you listen to your licensed physician before you ask for my advice. That being said;

1) This is pill form (most people think of chemotherapy as a port or an injection, Im so thankful this happened in 2017 when a particular pill is designed to kill the remaining Astrocytoma in my brain.

2) Fatigue:

It won't happen until you wake the next morning, but it will hit you like a ton of bricks.
My first night I took my anti-nausea 30 minutes before and I remember vomiting throughout the night. If you take an anti-nausea I took Ondansetron 8mg I recommend you space apart the chemo 50 minutes after you take this drug.

3) More fatigue:

You get used to it after a while. I did 42 days in a row of 180 mg before I stepped up to the plate and took 360 mg every 5 days a month. I can now empathize with women a bit...

4) Insomnia:
I rarely take this. However if its late and I desperately need sleep Temezepam 30mg

5) Anxiety:
I also rarely take this. Sometimes I take 1/2 to fall asleep, sometimes 2. Just depends on whats going on physically or mentally in my brain. Alprazolam 1mg

Here is a video of me taking my routine drugs. I apologize for repeating things over and over.

https://www.youtube.com/watch?v=Zu1A3ob0MK8&t=5s

8:00
9:00
10:00

Not in video: sleep medication

OPPORTUNITY IS OBNOXIOUS

Be selective about who you chose to be in your life. 

This can be very difficult when your trying to launch a brain cancer campaign from the ground up.

Please understand that I want to reach out to as many people as possible but I will only allow a select few into my inner circle. This doesn't mean that I don't want to connect with everyone, just realize it means certain details need to be kept private.

Everything I have done to this point essentially came down to my attitude. Yes, Ive asked for medical advice; business help, spiritual guidance, and every person that Ive come in contact with has been fantastic in one way or another. Everyone has a story and advice.

Ive also had "close friends" ignore me, make plans, cancel, apologize, make plans again, etc. etc. You get where Im going. Thats just the way the world works and everyone is always busy. I respect that. A lot of people do not know how to interact with you once you're diagnosed and thats something the patient and the other person have to deal with on a daily basis. As Eric Thomas says: "You ain't got but a few people in this world who actually care about you."

The one thing I never wanted from anyone was money. I continue to live on ramen profit and personally think its complete bullshit that I should even consider the thought of applying for  disability to continue living. Disability is there if you are disabled. I walked 10 miles yesterday and played 36 holes the week before. Do you call that disabled? Neither do I.

4 1/2 months after my surgery I tried working again. Although I was still taking chemotherapy, I just wanted to interact with people and contribute to society. After two days of training as a server at a sports bar, it was too much. The old things I were capable of doing were no longer part of my instincts.

Forcing myself to focus was foreign to me. It was hard to move at the speed I once had. Constantly adapting to new situations, I had to fall into a new routine where my brain was not ready for that type of change. My intentions and attitude were always correct but my body said differently.  After my second training shift I went home, fell on the bed with all of my clothes on and passed out.

The next day I called the manager and thanked him for the opportunity. Two weeks later $135 was in my bank account. At least the cell phone got paid and I made a few friends in the process.

When you have severe surgery, radiation, chemotherapy, it takes about a year for your brain to return to "normal" according to my Radiologist Dr. Emad Youseff. Attempting to work that early was a very unique learning experience that I will never forget.

This isn't going to be chronological (Steroids)

I want to make sure that this comes off as real and raw and as honest as it can be. 

Earlier this morning, a newly acquired friend on Facebook reached out to me. Her best friend was recently diagnosed with a similar condition and is concerned about her behavior regarding the steroids. 

Before surgery on 12/26/16 I was prescribed with a steroid called Dexamethasone 4mg. 

dexamethasone 4 mg tablet | Drug encyclopedia | Kaiser Permanente

(This drug is designed to reduce the swelling in the brain and was absolutely necessary in order to prepare me for brain surgery). I want to emphasize the size of this medication as its severity is extremely large and can have severe side effects. 

I took 1 tablet by mouth every 6 hours for the first 3 days (4 a day) 

Days 4-6 I took 1 tablet by mouth every 8 hours. (Reminder) this drug is designed to be tapered off as you discontinue it. 

Days 7-9 I took 1 tablet a day 

On day 10 I had brain surgery (January 5, 2017) 

As I recall, I was discharged on January 7th, or the 8th. (Real and honest).  

I then began taking a steroid called Methlyprednisolone 4mg Dose pack.

 methylprednisolone 4 mg tablets in a dose pack | Drug encyclopedia ...

Post Surgery:

Day 1 I took 6 tablets every 4 hours 

Day 2 I took 5 tablets every 4.8 hours

Day 3 I took 4 tablets every 6 hours 

Day 4 I took 3 tablets every 8 hours 

Day 5 I took 2 tablets every 12 hours

Final Day I took 1 tablet for 24 hours

MY SIDE EFFECTS:

Appetite

Immediately I had an insatiable appetite. I tried my best to eat healthy. However, I found myself up at 4 in the morning making 6-8 eggs with tomatoes, avocados, lots of cheese, and whatever else was in the fridge. After a brief nap, I would become hungry again. Eating at least one peanut butter and jelly or a turkey sandwich. By the time dinner rolled around, I wanted more and more. Long story short, I ate all the time. I gained 20 pounds in a month. You will be HUNGRY! 

Irritability

Although I like to think of my self as a calm, well thought out individual, I began to feel extremely  agitated. I recall yelling at the Keurig machine, the TV (commercials are louder than the actual show) my family, and anyone who would come into contact with me. My senses were heightened; the smells, hearing, feeling and overall emotions were at an EXTREME HIGH.

A lot of people don't understand what your brain is going through. Most don't know what to say and how to react. If you're a patient I highly suggest you turn your phone off, ask a parent or a close friend to handle all of your phone calls and apologize in advance to any stranger or friend you come into contact with. I was rude, swore, and I remember when people would call to check in on me I would either yell at them, cry, or ramble about useless topics. If you have social media, make an announcement that you're doing as well as can be expected and you need time to heal. Word travels quickly, if you're uncomfortable doing this, have someone close to you do it for you.  STAY OFF SOCIAL MEDIA

The best thing you can do to help someone with these symptoms is deal with it and don't take anything personal. Its not the patients fault, its the human brain reacting from a severe seizure, surgery, drugs, and natural human emotions. We all have brains, essentially they all are the same.

Acne

Within a week of taking the Dexamethasone, my body began to form acne and rash. Its a very common allergic reaction and I wouldn't be surprised if the next patient experiences the same symptoms. My rash occured around my chest, my stomach, and back. My acne continued to stay until 3 months after my last round of steroids. Invest in a back scratcher and some Aloe Vera.

Back from Phoenix for the Summer!

SUMMER MRI UPDATE 7/10/2017

For those of you who have been following my blog, thank you.  For those of you who have not, I understand. We all have busy lives. I wanted to let you know that my trip was successful and I had a wonderful time flying on Delta Airlines! I know Delta has taken a lot of heat with viral videos, but they were very accommodating to my father and I. We landed safely last night (7/18/2017) in Spokane, WA and my good friend and pastor Dan Christ picked us up from the airport, we were home by midnight. 

Dan Christ:
E-Mail: admin@cdaassembly.com
Phone: 208-667-5481
Mailing Address: 917 N 4th St, Coeur D' Alene, ID 83814



If you want to see my trip in further details, I've created a YouTube channel that you can follow along! Please Subscribe! https://youtu.be/u2P5eugAuss

I'm also public on:
Instragram: @tcarey_golf
Twitter: @tcarey63
Email: tylercarey11@yahoo.com
Phone: 208-277-6250

Please subscribe to my YouTube channel as I plan on developing a better website where all of your questions can be answered.  How did I pay for all of this? Who to talk to? Private Insurance? Out of Pocket? Medicaid vs. Medicare.  I can help you to the best of my ability with my resources. I recommend you contact Lanette Veres at graymattersfoundation.com

E-Mail: graymattersfoundation@gmail.com
Phone: 623-205-6446
Mailing Address:
Gray Matters Foundation
PO Box 27106
Scottsdale AZ 85255

https://www.youtube.com/watch?v=eQV1aTEIb2o




Back to the MRI. I had terrific news from my Oncologist! Although the news was great, it will be the last time I see Dr. Lynn Ashby as she plans to retire at the end of the summer. She will be replaced with:

Dr. Christopher Dardis

Neurology

Phone: 602 406 - 6262

Address: 500 W Thomas Rd Suite 300, Phoenix, AZ 85013

at Barrow Neurological Center who Lanette Veres has! 

Not pictured in the video is Donna at Outpatient Imaging! Hi Donna! She is on the right.

Carol, Registered Nurse at Barrow as well.

E-Mail:   Carol.prehoda@dignityhealth.org

Phone: 602-406-5224

Mailing Address: 

500 W Thomas Rd Suite 300, Phoenix, AZ 85013

Christmas Eve

Making the phone call

Before I begin talking about my procedure; I need to thank Lindsay Glass. He was the first to find me having my seizure. We remain close today. I also need to talk about the most important phone call of my life. Mom and Dad 1006 miles away. I'm lucky enough to still have my parents in my life. As I've aged I've realized they are the reason I was born, and the reason I'm alive today. Unfortunately, some people do not have that luxury. If you are caught in this position, call immediate family right away no matter what circumstances you've dealt with in the past. They will be there for you. If you do not have family; I recommend calling people closest to you. Every single human being has a heart and feels sympathy when you're in trouble. 

This particular phone call was one that I remember handling with questions first, information later. I wanted to let them know that I was ok and there was no need to panic. 

Typically when a millennial calls his/her baby-boomer parents its because they A:Need money B:In a car accident C:In jail. I've made a few of these calls before. I can now understand why a parent worries so much. 

My Father was fresh into retirement having worked as a mechanical engineer at the same company for over 38 years before retiring in June, 2016. He was drafted in the Army during the Vietnam War in 1969 and is a genius with engineering, math, and astrophysics. 

Dad is the type of person that understands there is no problem that cannot be solved. Time and effort will eventually fix the problem. If you're lucky enough to know my Dad; you agree that he should be working for NASA.

My Mother was fresh into unexpected retirement having worked as a Medical Transcriptionist for over 41 years at the same hospital.  Typical Mom, spending money on juice boxes for the entire little league team; juggling 2 kids, volunteering as a Girl Scout leader, all while working night shifts in a male dominated medical industry.  I called Dad because I know my Mom would immediately go into Mom mode and think about the thousands of medical records she had typed over the years. Its ok, Mom. I'm still here, and I'm not going anywhere for another 60 years. 

As my parents were frantically looking for hotels, packing, and preparing for a difficult 3 day drive during a brutal Northwest winter, I enjoyed a night and posted this on Facebook Christmas Day.

Watch my 

1st video