Friday, December 9, 2011

Good News

I had some good news last week. My MRI looked stable and my doctor thought the lesions look smaller! This is so exciting! So I'll do another cycle of the new chemo starting next Wednesday.

And the funny thing is that my hair is actually growing back so fast, I feel like a Chia Pet! Some parts are coming back faster than others, but I'll take it.  Apparently, there are two darker circles on the back of my head that make me look like a monarch butterfly (according to my mom and sister).

Wednesday, November 30, 2011

Groundhog's Day

I've been a little down and frustrated lately about my current life situation. It's frustrating to feel "stuck" and not know what the future holds, especially when treatments keep changing, how I feel keeps changing, the length of my hair keeps changing... :)  I try to be optimistic, but that can be draining too. A friend said my life right now is like the movie, "Groundhog's Day", where every day is the same and a way out seems impossible.

I don't like to give up, so I really started thinking about how much better I am now than I was a year ago. I think I block it out, but I was really sick a year ago. I had double vision, had to use a walker, had seizures, and couldn't even tolerate going to a restaurant for fear that something would happen.

I started wondering what the dates where for that time and as it turns out, I had my surgery where they took out the head port exactly one year ago tomorrow. It's funny how God brings these things to mind! The night before my surgery last year, I prayed that God would be with the doctors, that it will be an easy surgery, that I would remember that God is in control and that I would have faith. The surgery was a success and now I can see what a miracle it is that I had such a recovery.

Even though I'm still going through chemo and everything, I honestly can't believe how many little miracles have happened me. I thank you for all of your prayers, which have really protected and strengthened me.

P.S. Today was my first day off my diet restriction. I don't think diet coke has ever tasted this good!!

Monday, November 21, 2011

Two Days Left

I am so excited since I only have 2 days left of this chemo and I've done really well with it! I haven't been as sick as the doctors told me I'd be, so its been a surprise!

The rough part is the diet restrictions. I still have another week of that and worst of all, its over Thanksgiving! The funny thing is that I thought my little diet coke problem would die down since I've been in withdrawal for almost two weeks now, but it hasn't! All I want is a large fountain diet Coke and cheese! The half juice and half 7-up doesn't quite cut it, neither does a decaf Starbucks latte!

The other thing that is a little exciting is that my hair has started growing back! I honestly didn't think it would and I was preparing for having patchy hair. It looks like peach fuzz right now, but I'll take it!

My next MRI is December 1st. If my blood levels look good, then I'll start this 6-week cycle again. Thanks again for all of your prayers.

Happy Thanksgiving!

Friday, November 11, 2011

Chemo Starting Out Well?

I started my new chemo last week. I had one rough night, but that its! I'm a little surprised since the doctors keep telling me this is the most intense chemo. It's true that I can barely get out of bed right now, but at least I'm not getting sick.

The hardest thing is the diet I have to follow when I'm on this one chemo. No chocolate, no caffeine, and no cheese!!! Really? That is three weeks with no diet cokes or Starbucks, and its over the holidays! At least that cuts down on my caffeine budget! :)

Friday, October 28, 2011

Disney, MRI Results, and Next Step

So I had a few weeks away from the hospital and finally made it to CA! I don't know why, but my parents and I thought it would be fun to go on a road trip rather than flying (like my much smarter sister!). Never again! Both of my parents ended up getting sick and the side effects of radiation caught up with me, so I was exhausted the whole time. We were quite a threesome! And don't even get me started on the Clive Cussler audiobooks my parents made me listen to! :)

When we finally checked into the Disneyland Hotel, the lady at the front desk wanted to know if we were celebrating anything. My dad and I both said no, but my mom had to volunteer that we were celebrating finishing radiation. So, she made us four pins that said we were "celebrating Tiffany" to wear during our stay. Let's just say those never saw the light of day, but we did get our beds turned down with free chocolates. So maybe it was worth something!

Disneyland was a madhouse! Some of the school districts were on fall break (really?) and there are now Halloween parties at Disneyland, so it was crazy. At least we made it on most of our favorite rides.

Oh, and they have brought back Captain EO as a tribute to M.J.! Now, not to say this happened, but some of us (my sister and I) may have seen it twice! Who can resist Michael Jackson saving the universe through song and dance? They were selling Captain EO merchandise in the store, but most of it looked like it was just taken out of storage from 1986!

Overall, it was an interesting trip. At least we made it to In-n-Out a few times!

When I got home, I had another MRI. I got the results yesterday and the scan looked stable! My spinal cord  is clear with no lesions and now there are only two lesions in my brain and both have gotten smaller. Because the cancer is stable right now, the doctor wants to go ahead with another type of chemo. This is a pretty rough type of chemo and I'll probably start in the next few weeks. I am so relieved about the results. I really wasn't expecting that.

Thank you again for all of your prayers! I'll keep you updated!

Thursday, September 22, 2011

MRI Results

I had my MRI yesterday and the results were pretty good! The scan showed that some of the spots were actually gone! I don't have any more side effects, so I got the okay to go on my family trip to Disneyland! I am so excited for that!

Since I did so well with the radiation, the doctors want to take advantage of that and try another type of chemo when I get back from CA. I'll have another MRI and then get started on that. At least I get another month off!

Monday, September 19, 2011

MRI is coming!

My MRI is scheduled for this Wednesday, so I just have to get through two more nights and then we'll know how my brain is doing. This is the first scan since I finished radiation, so I'm a little nervous about how things will look. I did get a new pair of shoes and a new hat, so that should help!

I just ask for prayers for Wednesday. It'll be a long day since the MRI starts at 11am and I don't see the first  doctor until 2pm.

I don't really have any funny stories to share right now. I saw my grandma today and she knew who I was and asked where my sister was. This is huge since she normally thinks I am my 6'2" 49-year-old male cousin!

Friday, September 2, 2011

The Waiting Game

So I finished radiation last week and now the waiting game begins! I just found out my MRI is scheduled for September 21st and then we'll find out how my brain did with the radiation. It's always nerve-wracking waiting for the results.

To keep myself from going crazy while waiting, I've decided to go back to school and attend Calvary Chapel on-line Bible College. I signed up for one class to start. I can set my own pace and have four months to complete it. I don't know what is wrong with me, but I love being a student! I was so excited when my text books came in the mail and I might have ordered a new cute bag to carry them up and down the stairs! I am a sucker for school supplies too, so I made a run to Target yesterday for a new notebook, pens, and highlighters. It's a little sick, I know, but I can't help myself! :)

I actually feel really good. I just get tired easily and have had to change my schedule so I only do one outing a day. This keeps me from getting exhausted. I had a few big outings this past week. One was when my mom and I were leaving the grocery store and a woman pushing her cart started walking with us randomly. She asked me out of the blue if I want curly hair. What? She started talking about if I'd prefer curly or straight hair (which I said curly), how her mom had cancer and died, and then how she trains dogs for people going through treatment. She ended with saying how her best friend had a brain tumor and she let her Bernese mountain dog sleep on her friend's bed. By the end, we were so confused about what was happening that we couldn't find our car. She was a sweet woman, but really? And now I want a dog! :)

The other outing that was hilarious was when my cousin and I drove through Dairy Queen for a blizzard after our healthy lunch. When we got to the window, the cashier enthusiastically asked us if we were ready for an adventure today. Immediately we both thought that we had won a sweepstakes and were headed for Hawaii or somewhere else tropical. It turns out our "adventure" was the guy who was making our blizzards has won the state Blizzard championship three years in a row and won $5000.  Apparently he is the fastest Blizzard maker around! I don't understand why all of these funny things keep happening to us!

Wednesday, August 24, 2011


I am finished with radiation! I am so excited to be done. I might be tired and bald, but I made it! I get a month off and then I'll go back for a follow-up MRI. I really appreciate all of your support and prayers!

I attached a picture of my wig. I think it might be a little Bieber fever-ish! I'm not quite sure about it yet. I'm going to take it to my hair stylist, so he can help me with it. I also attached a picture of the cupcakes I bought for the cancer center workers. I didn't know that there were "hot fudge sundae" cupcakes! Everyone seemed to like them.

Monday, August 15, 2011

Magnum & a Little Bit of Good News

I have 13 treatments down and 7 more to go! The good news is that my spinal cord MRI came back clear, so the doctor stopped treatment on it! Apparently since I had just finished my last round on the spine in June and he was pretty aggressive this time, he doesn't think more radiation is needed. So now I just go in for my brain, which is nice since it only takes about 5 minutes and I don't have to change into a hospital gown!

The only side effect from radiation that I've gotten so far is hair loss. It started coming out in handfuls this weekend. I decided to shave it off last night, so it wouldn't drag on and get hair everywhere. My mom did the shaving and we were both in tears. I think this is the third time I've had to shave it, but at least now I can go buy new hats! (and new shoes, while I'm at it! :)

Over the past 10 years, I've noticed doctors can be hard to read by their facial expressions. My family and I think that medical school must have modeling classes on what "looks" to use when delivering different types of news, almost like "Magnum" or "Le Tigre" from the movie Zoolander. The "I Have Bad News Look", the "It Could Be Good, but Let's Not Get Too Excited Look", and the "You're Really Not Having Side Effects? Look" (which I get a lot). They all kinda look the same, like in Zoolander, so sometimes I have to ask for clarification or challenge them to an underground walk-off!

Tuesday, August 9, 2011

Halfway Done!

Tomorrow is Day 10 of radiation out of Day 20! I'm so glad to be halfway there! I met with the doctor on Monday and my spinal cord looks the same on the MRI as it did before, so that's good news. Nothing has changed and my side effects have gotten better. The doctor did say that he didn't expect me to do this well on treatment and that the tumor is responsive to radiation. I have to say that the prayers have really covered me. Thank you for your continual prayers!

More side effects could be coming this week, including hair loss, so we'll see what happens. I attached a photo of my chemo/MRI shoes in action. I didn't realize I had to walk through the hospital floor to get to the outdoor MRI machine, which is a bit of a hike. I probably would have chosen a shoe with no heel!

Sunday, August 7, 2011

Blue Angels & Vampire Teeth

I have 7 treatments down and 13 more to go! This has been an interesting week for me. It is SeaFair weekend in Seattle, which means that there are hydroplane boat races on Lake Washington and the Blue Angels perform demonstrations. I forgot that they closed one of the floating bridges last Thursday and Friday for Blue Angel practice. Let's just say it took us over two hours to get to the hospital and I was over an hour late for my treatment. Watching the Blue Angels fly over the freeway was cool for the first few times, but when everybody is so distracted and no one is moving, the road rage starts! By the time we arrived, my sister and I were so irritated that we were thinking of just staying in a hotel by the hospital to avoid further traffic. Thankfully, the traffic home wasn't bad and we were able to leave early enough the next day for lunch and a little shopping before radiation. 

One interesting thing about going to the hospital so often is watching all of the people. I had to do a double take the other day when I spotted a patient with vampire fangs. Not sure what was going on there, but I avoided making eye contact since he didn't look like Edward Cullen!

On Friday afternoon, I had to report a little side effect, which the doctors didn't think was that big of a deal and probably just a result of treatment. However, just to be careful, I had to go back on Saturday afternoon for a full spine MRI, which takes over an hour. Spending six days a week at the hospital is not my idea of a good time! I'll find out the results tomorrow.

Good news! My vision has consistently been back to normal for the past few days. No more patch for now! Thanks again for all of your prayers and support. It is very encouraging and helps me get through each day.

Tuesday, August 2, 2011

The Patch is Back!

So I started the new radiation plan and have completed four treatments. I  have 16 more to go. It is a little scary with them getting me into the right position and knowing they are blasting my entire nervous system with no filters. At least I haven't gotten any nausea yet, which the doctor expected would happen this week.

The double vision is back though and I even had to get out my eye patch for when my eyes get tired. The doctors upped my steroid dose, which has helped. (That means the appetite is back too!) The double vision is getting to be okay during the day, but gets worse when I go to bed and wake up. And its summer, so the patch doesn't really work for me seasonally like it did around Halloween! :)

The hardest thing about all of this right now is the fatigue and keeping a positive outlook down in the cancer center. It is located in the basement of the hospital with no windows. Thankfully everyone who works there is super friendly and that makes the experience better.

Tuesday, July 26, 2011

Add-on to Change of Plans

I had another bad doctors appt last Friday with the radiation oncologist. He feels that I need to have craniospinal radiation, which is radiation to both the brain and spinal cord. Since I've already had radiation to these areas, the side effects could be worse during treatment. But the choice is to either do the treatment with the possible side effects or wait until the disease starts causing these same side effects.

It's a really hard decision to make, but I feel like I need to do something to fight back. So I'll be starting the radiation on Thursday. I would appreciate prayers for a complete healing, but I also put together a little drawing with all the nasty side effects the doctor said could happen. If you feel like it, please pick one area and pray that area stays healthy and be protected from the radiation. Thank you!

Friday, July 22, 2011

Change of Plans

I went to the doctor yesterday and apparently my brain MRI looks really bad. The smaller cancer areas have gotten bigger and there are new ones showing. The chemo is not going to work anymore, so we've had to change our treatment plans again. I am getting whole brain radiation, which means they will irradiate my entire brain. I am a little concerned about this since it can cause short term memory loss and even dementia over time. I'll get three weeks of radiation, 5 days a week. After that, I will get another port put into my head for the spinal fluid chemo. They hope to get me started next week.

I am stunned by this news. This wasn't what I was expecting. My new chemo shoes sure didn't help me, even though everyone at the hospital loved them! My cousin actually wants to burn them, but I don't think I'm going to go that far! I would appreciate any prayers during this time. Thank you!

Tuesday, July 19, 2011

Chemo Shoes

So I don't want to sound materialistic, but I have found over my past few years on chemo that all of these medications can wreck havoc on your body. You can't depend on your weight to stay stable, especially when taking steroids that make your face puffy and you crave everything in sight. I should know...I normally can't stand breakfast food, but was just eating bacon, sausage, and eggs this past week. You can't rely on your hair either because that could fall out. It's a very frustrating process!

I discovered the power of a sassy shoe! Your feet don't really change during chemo. So when I first started chemo a couple years back, I thought a pair of red shoes would help make me feel better. This developed into a tradition, so for each round of chemo, I would try to find a pair of cute shoes to wear while taking it. I have to say that having new, sassy shoes helped to make me feel a little more normal. So when I started learning about friends starting cancer treatment, I would go pick out a pair for them and decorate the box with a superhero logo of "Cancer Fighting Shoes".  I love sharing a little piece of sassy with others going through such a difficult time.

I'm starting a new chemo within the next week, so today I picked out my new pair of chemo shoes-pink glitters from Toms. I attached a photo of those and some of my other chemo shoes. Its true that I may appear that I have gotten a little out of control, but I do wear them more than once! And if anyone needs some special chemo shoes, please let me know!

Friday, July 1, 2011

What a Year!

It has been a year today since my scheduled brain surgery was cancelled due to the new lesions in my brain. Talk about a long year! I was thinking about all that has happened and am amazed that I am still standing. I have had two rounds of radiation to my spinal cord, three kinds of chemo, two ports put in and one port taken out, one gamma knife treatment, and multiple lumbar punctures. I've had to use a walker, wear a patch, and have a comb-over hair cut.

All I can say is a big thank you for all of your prayers, support, and encouragement during the worst year of my life. I'm so blessed to have such a supportive family and group of friends. I know God has a plan in this and it will all work out for good. I sure would like to know what it is though! :)

And today is the last day of my radiation for my spine! Yeah!

Hope you all have a nice Fourth of July!

Tuesday, June 28, 2011

Next Step

I only have four days left of radiation! Everything is going smoothly with that. I did have to get three more tattoos with this round, so maybe I'll turn them into flowers or something cute later.

I met with my doctor last week and found out that my next chemotherapy is actually three different drugs that I'll take over six week cycles. He expects me to get really sick since I typically tend to get the bad side effects, like vomiting and low platelet counts. We'll just have to wait and see what happens.

He is going to talk to the neurosurgeon about putting a shunt in my brain that would deliver another chemo to the spinal fluid. It's either put in a shunt or get two lumbar punctures a week, which would not be fun. This would be happening at the same time as the other three drug chemo. Let's just say this was a very discouraging appointment! Especially since he said I looked like the picture of health. Really?

Something really funny happened to me the other day. I went to Starbucks to get my favorite iced latte and as I was walking toward the store, there were two older men walking towards it too. When that happens, you kinda wonder who will make it first and get into line first, but typically that's all. Well, one of the men started running towards the door. No joke-running! He beat both of us, put in his order, and sat down to start writing. When they actually called his order, he didn't even go get it. I have never seen anything like this! I guess people in Washington are very serious about their Starbucks!

Wednesday, June 22, 2011

I'm Tired!

I think I am just tired. I am physically tired from treatment and mentally drained from everything else. I'm trying to think of something entertaining to write about, but I just can't do it!

I started radiation to my spinal cord this week. Three days down, seven more to go! The actual treatment is only 15 minutes each day, but it takes a little over two hours of driving to get to the hospital and back. I think that actually tires me out the most. I meet with my doctor tomorrow to start talking about what chemotherapy to try next.  I just ask for prayers of wisdom that we make the right choice, so I can get a break from treatment!

This post sounds a little depressing. I'm really not...its just that none of the funny stuff has been happening to me lately. Although, I might be rocking my new pixie haircut! Who would have thought? :)

Thursday, June 9, 2011

Gamma Knife

So today I had my gamma knife. It was so much better than last time since I knew what I was getting myself into. I think I was more mentally prepared for it. They put the halo on in the morning, which is the worst part since they screw it into my head. It's definitely not a pleasant experience, but seemed a little better than last time! They tried to get to three areas of new growth, which took about an hour. I start radiation to my spine next week.

Just for fun, I took some photos of me with my halo on.

 This is my pretty halo face!

Wednesday, June 1, 2011

Bad News

I was just at the hospital for treatment last week and got the results of my latest MRI. Unfortunately, I have two new lesions on my brain and one new lesion on my lower spinal cord. I was so shocked since I feel so good and haven't had any symptoms. I meet with the radiologist on Friday and will have gamma knife surgery next Thursday. I'll have radiation for my spine again.

At least this time I know what I'm getting into with the gamma knife and radiation, so that's good. The doctors don't know it yet, but I'm getting more Novocaine and pain-killers than before! And I won't be too surprised when I wake up the next day looking like Chunk from The Goonies. I wasn't expecting that the last time!

Overall, this isn't the best news, but I still feel good and trust the doctors with my treatment options. Thank you for all of your prayers and support. It means the world to me!

Monday, May 23, 2011

My Grandpa

I've taken a little break from my blogging since my family has had a lot to deal with lately. My treatments are still going along. At least now I know that they are working, so it makes it a little easier to go through.

My grandpa just recently passed away. He was 91-years-old and died with his "boot straps on". He was able to live independently until the end. I will always remember him as being kind and a believer in doing what's right and fair. He was also a bit of a ladies man. According to the women in his apartment complex, he was a "true gentleman".  One of the ladies sent him a card at the hospital with a stamped self-addressed envelope inside, so he would be sure to write back. He would have loved that!

Now I just picture him dancing in heaven with my grandma. He doesn't need hearing aids or a walker anymore. I will really miss him!

Wednesday, April 27, 2011

10 Year Anniversary

Yesterday was the 10 year anniversary of my first brain surgery. What a roller coaster it has been! I got some good news spinal fluid is clear of cancer cells! I will still get chemo once a month and Avastin every two weeks to prevent any further growth. I go back to the hospital this weekend for the chemo. But I have it in print from my doctor (I had to double-check that I understood everything) that the new lesions in my brain, the lesion on my spinal cord, and the cancer cells in the spinal fluid are all gone and my original tumor is stable! I might have to print that email out and post it on my fridge!

And to celebrate I'm going to Disneyland! I might even have to buy some Mickey Mouse ears! :) Thank you all again for your thoughts and prayers. It is much appreciated.

Tuesday, April 12, 2011

My Life is a Mess

I don't know how many of you can relate to this, but I feel like my life is a mess! I have piles of clean laundry that I frankly don't want to fold. I have a cool metallic wreath that was a Christmas present that I still haven't hung yet. I want to become vegetarian and eat cancer-fighting foods, but I just bought Ruffles and a large Diet Coke at the grocery store (which both tasted very good!). I have phone calls to return and emails to reply to, but I just can't get it together enough to do it.

I know I have a good excuse since I'm going through chemo and all of that, but it is still frustrating to have little things that aren't crossed off the "To-Do List".  I feel like I sound like Eeyore! I was thinking about all this last night and was reminded that God's grace will get me through, even if it seems overwhelming now.

I have another lumbar puncture this week. I'm so ready to be done with those! Please pray for the results and that the cancer cells would be gone. Thank you! 

Wednesday, April 6, 2011

Finally out of the Hospital... Just took 5 days!

Well, this round of chemo has taken so much longer than usual! I have been really sick the whole time, but at least I busted out today and am now home!

Like normal, I was supposed to be admitted Friday at 11am. Thankfully, I called to confirm my check-in time and my room wasn't ready until 6pm that night. While being admitted that night, the nurse was reading answers I had given in the past to be sure everything was correct. On the Drug & Alcohol page, I apparently said that "I wish I could drink more, but the drugs prevent that". I didn't realize that they are so literal! I understand the subjective part of a medical note, but really? And that has been in my chart for months now. I don't think she understood my sense of humor!

Having the TV on all night made me notice some exciting new products for the "As Seen on TV" store. There is now a waterproof bib that is made just for adults. So if you every spill your coffee or juice (or Diet Coke), on your way to school or work, it won't stain your clothes! And I think you can buy 2 for $19.95. Great deal! And the colors were decent...bright red and bright blue.

Also there were these twin animal toys being sold together and the best part is that they unfold into slippers! In both child and adult sizes! And again for only $19.95 for two. At least I've learned a lot during this stay and have started my Christmas shopping list!

Good news though! I had an MRI and my scans were great! Both my brain and spinal cord look stable.  My doctor seemed really excited! I'll have another lumbar puncture next week to see how the spinal fluid is doing and then I'll have treatment only twice a month!! Thanks again for all of your prayers and thoughts. Much appreciated! God Bless!

P.S. Oh, to top everything off, when I arrived home, my Beta fish died. I think I forgot to ask someone to feed him, whoops! So he had a proper toilet funeral and is now in the big tank in the sky. I had grown a little attached to Starshine the Third!

Monday, March 28, 2011

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!

Monday, March 21, 2011

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.

Tuesday, March 15, 2011

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!

Sunday, March 13, 2011


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! 

Friday, March 11, 2011

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!!

Thursday, March 10, 2011


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.