Billy Elliot

It has become a running joke now that my family has bought season tickets this year for Broadway musicals in Seattle and we have not been able to see any of them! I've either been sick or in the hospital or my parents have been sick. We have given all of our tickets away to friends and family, so now we have jokingly become patrons of the arts. My aunt especially liked the dancing men in loincloths from Hair.

Yesterday was a different story though. I was finally able to go see a show...Billy Elliot. Keep in mind that, of course, my parents were sick. They gave their tickets to my cousin and her son. It was a really great show. It takes place in Northern England and has some very expressive adult language. Being a typical nine-year-old boy, my little cousin picked up on every word that was said. So not only did he expand his vocabulary, but he can now say it with a British accent! Can't wait for his teacher to hear that! Did I mention he goes to a Catholic school?

The other good thing was that yesterday I finally was able to go without a hat! I have enough hair now that I don't need one. It feels so nice not to have to worry about that anymore!

I have a big week ahead. I have an infusion on Thursday and then get admitted on Friday for chemo. I also have a full spine and brain MRI Friday afternoon. I'm not sure when I get the results, but would appreciate prayers for that. Thank you!

At the Hospital..again

The good news is that the cancer cells in my spinal fluid are dying, which I'm so relieved about! So that means that the "toxic" chemo is working. But the good news also means that I'm back at the hospital until Tuesday. And I'll be back again for the same treatment in two weeks. Good times!

I was really trying to find something funny that has happened here this weekend, but I just can't since this chemo is making me so nauseous and extremely tired. I was even trying to stump the neurology residents with challenging questions, but that didn't even work!! When I feel discouraged, I always read Psalm 139. It reminds me of how God is in every situation and He carries me through.

Anyways, thank you to all of my visitors!! Your visits helped make this weekend go a bit faster. And I appreciate all of your prayers and support! Take care.

Lumbar Punctures at Teaching Hospitals

I had my lumbar puncture yesterday to see if there are any cancer cells in my spinal fluid and it went okay. It's an uncomfortable procedure, but easier when fluoroscopy-guided, so the doctors can see where they are sticking the needle and only do it once.

I am being treated at the University of Washington Medical Center, which is a teaching hospital. This means that during the lumbar puncture (LP, for those in the know!), a resident is doing the procedure with an attending doctor watching and giving advice. I've had at least five now with a rotation of different residents.

Now, all of the residents are really good and this is all part of their training. However, when you are the one on the table with a needle going into your spine, it can be difficult to relax and trust what they are doing. I normally grip the pillow pretty hard. I know that I left marks on my mom's hand when she was in there with me!

During my first LP, I had a little seizure getting up on the table, which I think was caused by nerves. The resident was describing how he was maneuvering the needle and it wasn't making sense, so the attending asked him to "use his words". What?!?! If the needle was not in my back, I would have run away! Thankfully, that resident learned his lesson because the next LP he gave me was the most pain-free. 

The second one caused me to feel like there was liquid running down my back and legs. The chemo they injected cost about $6000, so I had to ask if the chemo was leaking since I wasn't going to pay for it! Apparently that is just the sensation my nerves get, which of course is unusual.

If anything weird could happen, it'll happen to me. After my last LP, I developed chemical meningitis, which was the most painful experience I've had and of course, very unusual. My resident yesterday was excited to meet someone who actually had meningitis, but kinda disappointed when he found out it wasn't caused by infection, but by the chemo. Really?

So, I'll find out the results this week. Hopefully, the cancer cells will be gone. If not, my doctor has to come up with another plan...again! Thanks to everyone for your kind comments. I would appreciate more prayers this week! Thank you!

Asymptomatic

So I thought I would explain the title of my blog. When you go to the neurologist, the doctor gives you tests like walking in a straight line or squeezing the doctor's fingers, which I like to do really hard just for fun. I have become a master at these tests since I've been doing them for almost 10 years. I have never really had any problems with them and was considered "asymptomatic" since I didn't show any signs of having a brain tumor. 

The first time these tests became difficult was last October when I started having double vision, which affected my balance, and seizures. Thankfully, it was around Halloween, so with an eye patch I kinda passed as a pirate. I just needed a parrot on my shoulder and pirate hat and the look would have been complete! I had to use a walker or wheelchair when going for long distances. I was the undisputed champ when racing the old ladies with their walkers at my grandma's home.

These symptoms just came on suddenly and turned my world (and my family's) upside down. I basically couldn't walk in a straight line and having your vision change so unexpectedly was frightening and frustrating. The seizures really affected my independence and I couldn't drive or be left alone. It was like my body wouldn't respond to what my brain wanted to do. You know things aren't right when your doctor says you look scary!

The doctors discovered that a cyst had developed near the port in my head, which was causing all of these symptoms. After successful removal of the cyst & port, and lots of prayer, these symptoms went away and everything was restored. I have never been so thankful before! It was such a lesson in appreciating each day and what abilities your body has today. These symptoms lasted for almost two months, but gave me more empathy for people that deal with this kind of stuff all the time. I have never been more grateful for being asymptomatic than I am now! 

A Day in the Life

Have you ever felt like your life was out of control? Welcome to the life of a cancer patient! So today I drove myself to McDonald's for my vice, a large diet Coke, which I have tried to quit numerous times and can't quite do it! I'll be a founding member of Diet Coke Anonymous. When I arrived home, I realized that my driver's license expired in December. Since it expired on my birthday, its too late to renew online and now I have to go to the DMV. I had no idea! And I really don't want my short hair on my license picture!

Then since the chemo I got last weekend is so toxic, every article of clothing I wore at the hospital has to be washed by itself, followed by an empty load in between. It is taking forever to get through this! And now that Britney Spears' song "Toxic" is stuck in my head!

Next week, I have a lumbar puncture on Monday. If there are no more cancer cells in my spinal fluid, I'll have another two weekends of chemo at the hospital after that. Good times!!

Welcome!

My name is Tiffany and I was diagnosed with a brain tumor almost 10 years ago. I have recently been interviewed by Ray Leonard on Ordinary People, Extraordinary Planet where I told my story. I have now created a blog to give further updates and hopefully create a place where people affected by cancer can tell their own stories. I am more than happy to answer any questions about things that have happened in my life.  

Here is a bit of my backstory:

I was 22 years old when I was diagnosed with a brain tumor. It was the spring break of my senior year of college. I had to drop out of school and begin treatment. Over the past ten years, I have had surgery, radiation, gamma knife, and chemotherapy.  The past eight months have involved more intense treatment since the cancer cells moved to my spinal fluid and created a lesion on my spinal cord. I have had radiation to my spine and chemotherapy for both the original tumor and cancer cells in my spinal fluid. I also had a chest port put in, as well as a port that went into my brain. The head port had to be removed since a cyst developed near it and caused me to have double vision and seizures. Thankfully, those symptoms have gone away since the port was removed. Right now, I am having chemotherapy for my spinal fluid where I have to be admitted to the hospital for four days. I have one more to go, and then we’ll see if it worked to decide further treatment.

Good things have also happened over the past 10 years! I was able to finish my undergraduate education. I received my masters in occupational therapy and was able to work in my field. I enjoy being with my friends and family, who are so supportive that it has made these ten years easier. I also know that God is in control of my life and is bigger than this disease. I have faith that all things work together for good, even if I don’t understand it right now. I am unsure what the future holds, but I try to live a day at a day and enjoy my life.