This past weekend I was in Columbia, MD at a 24 Hours of Booty event. It was an opportunity to see some of my Key to Keys family and cheer them on. All I knew about the event was that cyclists would ride around a 2.1-mile loop and we could stand and cheer for them. However, when I got there I found out it was more than just a cycling event.
24 Hours of Booty is an organization that integrates raising money for the local cancer community through cycling. They help to support and raise funds for local and national cancer organizations. It is a cycling event for all ages and abilities. Most importantly they help to engage communities in support of cancer survivorship and navigation programs.
As soon as I got to the event I was happily greeted by some of my Key to Keys family. We had an area set up with tents and chairs where everyone could sit when they weren’t riding their bikes or cheering. We definitely had the most snacks set up which was a major plus in my book.
At 2pm the event kicked off and the cycling began. I waited to go cheer on the loop until there was shade to sit underneath. That’s when we brought out the mega phones. On our Key to Keys trip part of the job description for a support driver is to be a cheerleader for your group each day. We quickly claimed our area and decided to cheer for everyone.
Now when I say cheer it wasn’t your average, “keep going you got this” or “looking good out there”. We were those people that yelled obnoxious comments that would make you laugh or make your head turn. Some of my favorite phrases we yelled included: “hey hotties”, “my favorite number is your phone number”, “call the fire department because you are on fire”, “ OHHHHH YEEAAAA (said in a voice like the Kool-Aid man), and the list goes on and on. If we knew the cyclist, we would shout particular things we knew they would laugh at. Whenever we saw a group of cyclists we would call them a “wolf pack” and shout to them. Needless to say, we all had each other laughing to the point where we couldn’t breath. It was one of the few times we could shout things to random strangers on the street that was acceptable. We knew the cyclists were also enjoying it when one stopped and thanked us for cheering and shouting things to them.
I was most impressed with the children on bikes who did the course too. Whenever they would go by our group, we would cheer for them too. We all were blown away with how many laps the kids did. Whenever they would ride by us and we would start cheering, they would get the biggest smiles on their faces. Between the Hello Kitty helmet and Cars themed bike, they were killin it on the course.
Not only did we cheer for people but when they would ride by we would comment on their various outfits. We saw everything from your traditional cycling outfits to people rocking tie-dye and wearing tiaras. My favorite was when people were riding at night they decked out their bikes in glow sticks. It was so cool to see someone riding by on a bike with multi-color wheels. Our group wore their cycling jerseys from Key to Keys so we could easily pick them out in the crowd. If we saw groups all in matching cycling jerseys we would shout to them, “twins” or “did you guys plan your outfits or just show up wearing the same thing.” One of my favorite comments we yelled was at a duo that was wearing matching jerseys with the Old Bay logo. We yelled to them at one point, “every time you ride past me, you bring that extra spice I need into my life”,
My favorite part of the event was listening to the speakers at the various meals. They shared their cancer stories with the group or how their organization is helping those affected by cancer. I instantly connected with their stories and completely understood what they were saying. Cancer is a very isolating illness. It’s hard to see everyone else experience the various milestones in life while you feel like you’re stuck on a merry go round. While most people are contemplating what color to paint a room, some are deciding which cancer treatment will give them the least amount of side effects so they can still feel normal.
The one thing that really hit home for me was when one of the speakers talked about how he wished people would, “just freakin ask me” when talking about his cancer. We don’t bite and you can still talk to us regardless of the fact we have cancer. Ask us questions and if we aren’t comfortable with you asking, we will tell you. Don’t just write us off or not talk to us because you are too afraid. Just remember you aren’t the one who has to deal with it on a daily basis. The more we talk about it the better we feel. Most of you know I thrive on making sarcastic comments about anything. It’s my way of getting it out and laughing about it. If you keep it inside, it will only make things worse. Just like you have to be a self-advocate in the hospital setting, you have to be vocal about it.
I also was convinced to participate in the whole cycling part of the event too. I borrowed another person’s bike and helmet. I told the group the only way I was going out there was if someone else was going with me. Luckily my Key to Keys family jumped on their bikes next to me and we went out together. I rode with other cancer survivors and part of the family for the first two laps. It was fun being able to ride and talk with everyone and get to see it from the other side. I loved when people from our group who were already on the course would join us. Later in the morning, when my mom and sister arrived, I went out for my third lap. I got to experience that lap with the two people who connected me with Ulman and helped introduce me to a network of support. At the end of the lap I said to one of them, since the other is super tall and left us in the dust with his pedaling, that I decided that my 3 laps were for my 3 years of treatment. My exciting cycling career started with me biking 6.3 miles and realizing that biking up a hill is a pain in the ass, literally.
This event was filled with a group of ordinary riders who were riding for an extraordinary cause. Most of the riders dedicated their ride to specific people they knew who were affected by cancer. They were riding in memory or in honor of them. There was a huge board that the riders could write their personal goal of how many miles they were riding and a description of what they were wearing. This way you could cheer for them. When each rider reached his or her goal they would come and ring the bell and we all would cheer for them. The miles ranged from 10 to over 300.
While I was riding on the course with my fellow Key to Keys family, my one friend looked over and asked me, “so when do you start your new treatments?” I responded with, “well I started my new treatment over two weeks ago and I took my morning dose about an hour before I got on my bike.” He then had a huge smile on his face. In the words of a friend I met on Key to Keys this past year who has an amazing voice, “I hope some day you'll meet people who turn rainy days into dance parties, who crush goals and fight cancer and make you laugh when your head hurts so bad you want to cry. The kind of people who change your life and make you look at things just a little differently...these are those people for me.”
In the beginning of August I began a Phase II Clinical trial at Dana-Farber Cancer Institute in Boston. In June I found out that my other medication was no longer working at the current dose. My options were to increase the dose or explore other treatments. I didn’t want to increase the dose because I knew my body would not be able to handle it. In the beginning of July, I went to Dana-Farber to find out about the clinical trials they offered. I learned about different treatment options and eventually decided to participate in a Phase II clinical trial specifically targeted at Synovial Sarcoma. They have a whole floor just dedicated to sarcomas.
Most people in my age bracket are focusing on other things in life. Usually they are starting a new job, moving into a new home, getting married, and the list goes on in on. I, instead, was going to start a new treatment, in a new city, with a new team of doctors and nurses, and in a new hospital system. Talk about a loaded sentence. It wasn’t easy for me to make the decision but when I found out there were only 4 spots left in the trial I signed my name on that dotted line faster that anything.
You’re probably wondering what a Phase II clinical trial is and what it entails. Basically in a Phase II trial I am given the highest dose of the new drug to see how my body reacts to it. This dose is based on the results from the Phase I study. There are only about 40 people enrolled in this specific study. They are testing to see how effective the drug is against my specific cancer. If this drug ends up working and pushes through to be approved by the FDA you can thank me for being a test subject.
If you thought getting into an Ivy League college was hard, try getting into a clinical trial. Most colleges reject students because of a bad SAT score or not enough extra curricular activities. If you aren’t accepted into a clinical trial it's because of your genetic makeup. You aren't rejected because your teacher gave you a bad grade or your dog ate your homework.
Believe me when I tell you those spots go quickly too. When there are only 40 spots left for your rare cancer you have to act quickly. I had a 48-hour decision window. I signed the paperwork on a Friday and by the next Tuesday the trial was closed. I compared it to shopping at Best Buy on Black Friday. If you don’t get there early enough and act quickly your TV will be gone. Needless to say you don’t want to mess with us cancer patients when we are trying to get into a trial. We can turn into that crazy lady in line who’s guarding her TV. Simple rule is don’t mess with us. We too are racing against the clock in some instances.
Once you sign your paperwork, your spot is saved. The next step was completing a bunch of screening tests to make sure you were eligible for the trial. If you passed those tests, then you could begin the trial. I however kept pushing my start date so that I was able to go to HITS Saugerties with my barn for a week. As soon as we got back from the horse show and I got Joe squared away, we drove to Boston to complete my testing and started the trial.
Thankfully this trial is a pill. I take 4 pills twice a day. I have to keep a diary of when I take the medicine and it’s strange for me to take it with food. With my other medicine I had to wait to take it on an empty stomach, which meant 1 hour before or 2 hours after food. The drug also looks like the Sam’s Club Brand Ibuprofen that my mom buys. Don’t worry she hasn’t tried to take it……. yet.
In a nutshell my treatments have now taken me to Boston. Thankfully I love Boston. Both my sister and I went to school in New England and loved it here. I however chose to go to a school on the cliffs overlooking the ocean instead of one on the Charles. It’s funny to be back in Boston now for treatment. As we were walking around the city the other day I felt like I was back in college. I don’t think of my life before or during cancer. I think of it just as my life. I hate when people refer to there life as before, during, or after cancer. No need to dramatize it, just deal with it.
I am a private person and didn’t want to share this new treatment until I was accepted into the trial and started taking the new medication. We are in uncharted territory and are learning to just roll with it. We are still trying to get used to the new clinic and how it works.
I initially chose to start this blog to document the bizarre and funny things that have happened. Let me tell you, with a new treatment that means plenty of stories to share. I didn’t start writing to draw attention to myself or to gain sympathy. If you took one look at me, you would never guess my situation. I’ve had several people tell me things like “its great to see you out” or “you look amazing”. They clearly have no idea that I spend the majority of my time at the barn with Joe. When someone says that I look good I have started responding with “it doesn’t hurt to take a shower”.
Silence isn’t always golden. As you have probably noticed I took a 9-month hiatus from the blog. I would like to say it was because I was busy but that wouldn’t be telling the truth. I made an executive decision to take a break from writing, which proved to be a major mistake. Trust me when I tell you that there have been multiple times where I have sat and started to write something but then later deleted it. In other words, I am back.
This past week I was at Camp Dost when it hit me hard. When you don’t talk about what you have been through, it eventually catches up to you. I was suppressing my emotions to make everyone else feel comfortable. For me it is usually in the quiet moments when I have lots of free time and I am not in my normal routine. It is when I am in places where I feel most at ease and comfortable, that my anxiety comes out. I was sitting on the back porch of my cabin before the campers arrived when everything hit me. I had that heaviness in my chest and I couldn’t breathe. I decided to walk around and I quickly realized: it’s time to write about all the shit that has been happening. Luckily while I was at camp I was surrounded by people who understood what was happening and I was able to talk with them about it. It was the people who followed me into the Med Shed when I got that feeling, or took me on a walk or talked with me in rocking chairs when the anxiety came out. I felt better talking about it and knew its time to get back to writing.
I want to thank everyone for reading this blog. When I first started writing I assumed that just my family and a couple friends were reading it. I never thought that my doctors would be asking me about the blog or telling me you should probably include this in your blog. This year on my Key to Keys trip I was encouraged by everyone to get back to the blog and writing. Even at camp someone who takes videos and pictures all week asked me why I stopped blogging and I couldn’t come up with a legitimate answer. I had someone tell me they missed the blog because it had brought laughter into her life. I appreciate those people who called me out and said I needed to get back to it. Clearly they knew what was up.
As for my treatment right now, all I can say is that I have been on a break from my meds and am working on a new plan. I don’t want to write about what’s happening next because it hasn’t happened yet. Don’t worry you’ll hear about it soon enough. I am still trying to enjoy the day and recall all the bizarre stuff that has happened. Let me tell you, I am still finding myself in situations where I think you really can’t make this shit up.
Here is a quick funny story until next time. Back in April I was at my local cancer center and decided to take a look at the “healing garden” which is outside. First of all, to get to it you have to go through this weird side door that locks when you’re out there. Therefore, you have to shove a rock in the door to keep it open. As I was walking outside I noticed that the bench in the garden was no longer standing, but in 2 pieces. On the bench was a quote that read, “Believe…never give up.” Clearly that bench had seen better days and was supposed to be a symbol of hope to us cancer patients. I couldn’t stop laughing at it because who keeps a broken bench with this phrase on it in a healing garden? Just take it away instead of leaving it there. Hopefully by now it is no longer there.
If there is anything I have learned over the past few months is that laugh often and surround yourself with people that make you laugh. I have been lucky enough to find people who laugh at my jokes. I am not sure if it is because they are actually funny or because they feel obligated to laugh on account of the cancer. Recently if anyone asks me how I am doing I say great and just have a touch of the cancer. Sometimes you have to keep people on their toes and guessing as to what you’ll say next.
For the past year I have been helping with the planning for my sister’s wedding. After Sam got engaged last October I have been helping my mom get ready, behind the scenes. Little did I know that my Maid of Honor duties would include helping to pick out the cocktail napkins and cutting over 800 pieces of ribbons for the favors.
The only thing I couldn’t help with was the weather. This past week was constant rain. I had several people telling me that rain was good luck or what a shame it was that the weather was going to be cold and rainy. Luckily my mom is a planner and we had anticipated the rain and planned ahead. We got a tent, heaters, umbrellas, and everything else. I really wanted to buy ponchos with their faces on it but I was quickly vetoed. Also everyone apologized about the rain. It wasn’t their fault that it rained. It reminded me of when I first was diagnosed and everyone kept saying how sorry they were. You didn’t cause it so you don’t need to apologize for my cancerness.
Now that we have entered post-wedding life it’s time to get back to reality. I have been on a chemo break for 2 months now and it couldn’t have come at a more perfect time. I was able to be part of the big celebration and the lead up to the big day. Soon I will get back to taking my chemo on a daily basis. I thoroughly enjoyed my break and I am pretty sure I have gained back any weight I lost. I have eaten so much in the past two months and it has been glorious. It was nice to be able to eat something and not wonder if in an hour I would be sprinting to the bathroom.
Don’t worry. Joe has been with me throughout the wedding planning too. I think his favorite days were when I was away for a couple days for other weddings and a bachelorette weekend. He just loves his vacation time. Since on my chemo break I have the energy to actually accomplish something. We have recently been working on jumping. This past week my mom and sister came out to watch me ride. My favorite moment was seeing the look on their faces after we finished going over a couple jumps. They were just as excited as me. I am pretty sure Joe is pissed he wasn’t invited to the wedding. When I went to see him he had rolled in the mud, thanks to all the rain.
The most important thing that remained constant throughout the wedding planning has been my family. A family friend who came in for the wedding from Senegal explained what the best definition of what family is. She said that anyone you have come into contact with and whom you have taken care of becomes your family. It doesn’t matter where they come from or how long you have known them. I consider anyone who I have come into contact with over the past two years to be part of my family. Everyone has been a big influence in my life and has helped me along the way.
Now with the wedding over everyone keeps asking, “What’s next?” I plan to get back to blogging for sure. For this week however, I plan to catch up on sleep, go for my routine MRI of my knee, and ride. The bride and groom are happily in Italy for the next two weeks. After all the behind the scenes work we did for their wedding I hope they bring back some awesome gifts. If not I already threatened to switch all the cards on their wedding gifts so they would never truly knew who gave them what.
It has been over 4 months since my last post. Any time I sat down at my computer to start writing, I got frustrated. I couldn’t find the words I wanted to say. I felt like I was back in school when I was forced to write papers. This past weekend I decided it was time to get back to writing. A lot has happened in the past couple of months. I didn’t realize the amount of people who read this blog. This past weekend, at our second “Screw Cancer Brew Hope”, several people asked me when I would get back to the blog. After I shared my story at this event and was greeted with a standing ovation, I realized it’s time to get back to writing.
Everyone has their own story. No matter what life situation you are in, I find that connecting with people who have had similar experiences is the best way to get through anything. I have been fortunate enough to be surrounded by people who are willing to support me and be there in my time of need. I am generally a very private person. I do not like to post on social media about what is going on in my life. I usually don’t let people know I have been at the doctor or have gone for tests until afterwards. I was hospitalized earlier in the month for an overnight and even then I didn’t let a lot of people know. It is just nature of the how I handle my disease. When people hear you were hospitalized they tend to go into freak out mode.
What has been going on for the past couple months? I have been riding Joe as much as possible. I was a counselor at Camp Dost for a week. I went on vacation for a week at the beach. I have been attending and helping to plan showers, parties, and a BBQ/Pig Roast for my sister and her finance, since they will be getting married this fall. I attended my cousin’s wedding. Most importantly I have been trying to live my life. Just because I have cancer it doesn’t mean that everything around me is going to stop. Life moves forward, people change, and in the end the most important thing is to be with the people that have been with you from the beginning.
I have had plenty of awkward and bizarre encounters in the past couple of months that have been more than entertaining. I plan to write about them in the upcoming weeks. The most recent story was at a party this weekend that we were hosting with our friends, who have become family to me. Before the program started and I was talking with people and I was asked questions. It started with the usual: “how are you feeling and how is treatment going?” Then they said, “You look great. Have you been working out? You look like you have lost a ton of weight.” I just quickly smiled and said, “No I have just been doing my usual routine but thank you.” What I really wanted to say was, “The reason I look thinner is because my chemo pills make me sick to the point where I don’t like to eat a lot because I get horrible diarrhea or throw up.” I knew to keep quiet for once. Plus that person probably had no idea what to say and that’s ok.
Cancer is an awkward topic and most people are generally afraid to talk about it. It is just a word. Usually when someone tells me that they knew someone who died from cancer they just give me the look. I call it the “oh shit I shouldn’t have said that because she has cancer.” My usual response is, “it always is the cancer in the end.” Just because I have cancer doesn’t mean talking about it is a forbidden topic. However, there are times where I do not want to talk about it. If you know me well enough, you know when that it is. Also it is blatantly obvious when someone gives you a one-word answer of, ”fine” that means they don’t want to be asked any more questions. Now everyone is going to be afraid to ask me any questions. Don’t worry, if you ask me about Joe or my family, you will not be met with a hostile response of, “I don’t want to talk about it right now!”
Just remember to laugh at the bizarre; try to enjoy each day; and remember that no matter what happens in life, tomorrow is a new day. Even if it is the Monday after you get home for a vacation and you wish you were still at the beach.
I am back from my trip to Key West. In case you didn’t know, I spent last week with the Ulman Cancer Fund for Young Adults on their Key to Keys trip. The group biked from Baltimore to Key West over eight days and I was a support driver. We stopped at various cities along the way. I promise to write about it soon. It was an amazing experience that opened several doors for me on every level.
Today I had back-to-back appointments with two of my doctors. I saw my oncologist in the morning and then my orthopedic surgeon in the afternoon. When I scheduled the appointments I figured I might as well get it all done in one sweep.
I got my dose of reality this morning when I walked into the cancer center. I started taking my chemo pills on Tuesday when I got home. Luckily I was given two weeks off. I had the week before the trip and the week of the trip off. I am very thankful that I had those 2 weeks off. It was a lifesaver. As I was walking to the check in area I noticed many of the other patients looking at me. Between the white hair and the over 30-year age gap between us, I was a sight to see. I checked in and talked with the nurses and staff who work there. I hadn’t been there in over a month so I was happy to see them and catch up. I knew some of them had seen photos online of the trip. After checking in I sat by my mom and avoided eye contact with everyone.
I quickly looked up and saw three family friends who we hadn’t seen in months. It was so weird because we had just been talking about them. We said hello and exchanged several hugs. I had even more people staring at me now. After being on my trip last week I got used to greeting people with hugs and saying hello. They sat and talked with us for a while until they had to go upstairs for their appointment. After they left I noticed that the woman sitting near us had moved. Apparently when I was talking with our friends she pointed at me and said to my mom, “I guess she must work here since she seems to know everyone.” My mom responded with, “Actually no she’s been a patient here for a long time,” She then said in a condescending tone to my mom, “well she looks really good to be a patient here.” All I can say is thank God I didn’t hear that comment or else my sassiness would’ve come out. Last time I checked I am still a cancer patient like everyone else. Although my hair is white and today I look good, I still take my chemo pills 5 days a week. I don’t fit the stereotypical cancer patient description. Guess she was taking a once over of everyone in the waiting room.
After getting my blood work we went upstairs to see my oncologist. While I was in Key West I got a henna tattoo of a bike on my ankle to remember the trip. A couple of the people on the trip got tattoos but there was no way I was going to get a real one. I can barely make up my mind when it comes to simple decisions. Plus I am afraid of needles. When my doctor walked into the exam room I told him about my leg getting swollen after the trip from flying and being on my feet. He took one look at my ankle and said, “What is that?” I said it was a henna tattoo and would fade away in a couple of weeks. It certainly fooled him. I couldn’t stop laughing. He knew I would also be seeing my orthopedic surgeon and we decided I wouldn’t say anything about the henna just to see his reaction.
Once my appointment was over we decided to do some random errands to kill time. We didn’t have enough time to go home so we headed towards my orthopedic surgeons office. We stopped for lunch near the hospital and then drove around for a little while. Once we got to the hospital we went up to the chemo floor and visited my old nurses. I absolutely love visiting them and catching up. It is very rare that we get to see everyone with our different schedules and timing. We got to see a big group of them today and I knew everyone really well. I grew close to them when I was in the hospital for my inpatient chemo. When you’re stuck in the hospital for four days and not allowed to leave your floor, the nurses become part of your family.
We then went to another section of the hospital where my orthopedic surgeon’s office is located. I checked in and then was called back. It’s always the same routine no matter what office we go to. They weigh you and then ask your height. I didn’t have anything else taken since my vitals were recorded this morning at my other appointment. When we walked into the exam room it had a unique smell that both of us picked up on. Only we noticed the smell since the nurse told us she couldn’t smell it because of her cold. Then the nurse started asking me the other normal questions but it sounded like I was being interrogated. As you can imagine I ran with it. When she asked, “do you take illegal drugs” I responded with, “no” then leaned over to my mom and said, “Depends on what you define as illegal”. Then my absolute favorite question is, “are you in pain?” Let me see I had a tumor removed over a year ago and then radiation to my knee and it still hurts. I said it was a 5 on a scale of 1-10, which is in the middle. I knew when I signed up for this rodeo that I would have to deal with knee pain for a long time. I have just learned to deal with it. She then asked, “How long has this pain been here?” I quickly said, “I have had it for awhile.” Apparently that wasn’t specific enough so I had to give the exact amount of time. I just went with three months.
After she was done asking the questions she got up to leave and said, “oh I do smell that now. I will be right back.” She came in with a can of some type of air freshener and sprayed the room. The label should have said, “A little goes a long way” because that stuff was strong. Instead of reacting like a normal person I started laughing. I was laughing so hard that I couldn’t talk and my mom was laughing too. Between the interrogating questions and the spray we just couldn’t stop laughing. When my surgeon walked in we were will still laughing and we couldn’t pull it together. Then he started laughing too. What else could you do?
During the first part of my appointment I could tell that my surgeon was looking at my ankle. I figured he was probably wondering when I got the tattoo. I didn’t say anything, to see if he would respond like my oncologist earlier this morning. After changing into my hospital shorts so he could look at my knee I told him it was a henna tattoo. He was happy to hear that and said that when he walked out of the room while I was changing, he had made a “mental note” of the new addition. Once again I started laughing because he didn’t want to bring any unwanted attention to it. Meanwhile my oncologist had no problem pointing it out and asking what the heck it was.
I didn’t mind having two appointments today in two locations. I would rather get in all done in one sweep then having to go back and forth different times during the week. Plus I got to see people at both places that I haven’t seen in awhile. It gave me the opportunity to catch up with everyone and to visit. On our way home we stopped for ice cream. When I was first diagnosed we would stop for ice cream each time on the way home after appointments with my oncologist. We hadn’t stopped for ice cream after appointments in a long time so I figured today was the perfect day to stop.
I was sitting with my trainer in the office at the barn on Friday when I got a phone call from my mom. She had just gotten off the phone with our local newscaster who was asking for an interview for the #OliviaMeetsJimmy campaign. I, of course, thought they wanted to set up a time for next week. They wanted to come right now and the newscaster would be arriving in 20 minutes. I practically dropped the phone when I hung up. When I told my trainer what was about to happen she immediately called her husband, who is also my trainer, to tell him to get over to the barn and help.
I looked down at my outfit and quickly realized that my neon colored sweatshirt would not be the best option for the camera. My hair already draws attention and the neon would not help. I called my mom and asked for a different sweatshirt. I went with Ulman blue. If you know that group you’ll understand the reference. Then we realized Joe would be on camera since they wanted to feature him in the story too. My trainers quickly trimmed his whiskers while he was hanging out in his stall. He was oblivious as to what was about to happen.
I figured that during my interview they might ask about any organizations that I had worked with in the cancer world. I made a phone call to a friend who is part of one of the organizations I was going to mention, just to make sure I said the correct things. He gave me the information I would need and was happy to have it mentioned in the interview. I also made a quick phone call to a family friend who I knew would want to be there in the action. I was very happy when she answered the phone and was willing to drop everything and come over to be part of the fun that was about to unfold.
When my mom arrived at the barn I quickly changed and got Joe out of his stall. Within seconds the newscaster arrived and wanted to begin filming while I was getting Joe ready. He wanted to capture me brushing Joe at all different angles. When he was filming near Joe’s face there were a couple times when Joe got very close to the camera. I was waiting for him to try and bite it thinking it was food.
After grooming and tacking up he wanted footage of me riding. After trotting around the ring a couple times he asked if I would go over a jump. Normally I would have said yes but I hadn’t jumped recently and I didn’t want to become an Internet sensation for falling off my horse while going over a jump. While I was walking out of the ring with Joe he wanted to get some “candid” shots of Joe and me. At this point Joe was more concerned with the hay that would be awaiting him in his stall for lunch. Luckily my trainer quickly grabbed some treats to distract him and help him pose.
Once I put Joe away, the newscaster wanted to do the interview segment. My mom and family friend helped me put on my Tonight Show hat. If we were going to get our point across, we were going to be bluntly obvious. I was asked the usual questions: what’s your age, where are you from, what kind of cancer do you have, when were you diagnosed, and so on. Then I was asked about the campaign and how it started. If you saw the interview I will save you all the details. The one part of the interview that was cut was when I talked extensively about the organizations we have worked with. I talked about the Ulman Cancer Fund for Young Adults and ThinkBIG Pediatric Cancer Fund. I talked about both groups and what they do. I even made sure to say the names of the people from our area that are heavily involved in them. If you want more information on these organizations feel free to type them into a search engine or social media website. They also have been on Operation Olivia.
Later that day the story was aired on our local news at various times. The major comment I got from everyone was that my horse Joe looked great in the interview. I just hope his new found fame doesn’t go to his head. I went from flying under the radar to being on the news. The story has taken off on social media and was shared by several people. Thank you to everyone who is helping with the #OliviaMeetsJimmy campaign. It went from an idea being presented to me at my kitchen table to being part of a story on the news. It has grown into people posting pictures with the #OliviaMeetsJimmy campaign and now a smile challenge where people will challenge their friends to tell jokes. In case you were wondering this is my go to joke, “Why do seagulls fly over the ocean? Because if they flew over the bay they would be bagels!”
As I mentioned in an earlier post we went to Disney recently to watch my sister run in the Disney Princess Half Marathon in February. The race route was 13.1 miles that started in Epcot, looped around the Magic Kingdom and finished in Epcot. The race was on a Sunday morning and my mom and I decided we would cheer everyone on at the finish line. The night before the race Sam and our friends decided they would meet at 3:45am at the monorail to head to the race. They had to be there early since the first group of runners started at 5:30am. What I like to call the die-hard runners. I was all set to wake up around 6:30am and meet my mom at the monorail by 7am to head to Epcot. We both knew they would finish around 10am.
The morning of the race I woke up around 4am to what sounded like music playing next door. It was a loud base type noise. It sounded like it does when you drive up next to someone at an intersection and their playing music so loud you hear the bass. I, of course, called my mom who told me that it was music for the race. She had opened the window in her room to make sure she wasn’t hearing things. They were already playing music for the race to get the runners excited for what they were about to endure. Only at Disney would they be blasting music at 4am. Luckily I was able to fall back to sleep.
I met my mom at 7am and we took the monorail to the transportation center where we switched to the Epcot monorail. By then the race was in full swing and as we were riding towards Epcot we could see the runners. At one overpass in the highway there was a DJ with huge Mickey hands playing music and pumping up the crowds. All the runners below were raising their hands at him mimicking his movements. I also noticed at various points throughout the race there were places where you could stop and get your picture with Disney characters.
We got to Epcot and walked towards the race finish line. I was tracking Sam with my phone and every 45 minutes we got updates on her progress and her estimated finish time. We were part of the Cheer Squad section, which included getting a free t-shirt, blanket, and clapping hand to use for cheering. It also got us into this tent near the finish line that served breakfast. After eating our breakfast I got my pictures taken with Belle, Chip, and The Beast. We decided to go sit in the grandstand area and watch the runners go through the finish line.
At the finish line they had 2 DJs who were commenting on the various costumes and pumping up the crowd. Not only were they sarcastic, they were hysterical. They would point out the various costumes and talk about them. Everyone in the race wore a costume. We saw people dressed like Olaf, Cinderella and Prince Charming, Cruella de Vil and a Dalmatian, men dressed as princesses and woman who were their princes, Elsa and Anna, Elvis, Waldo, and anything you can think of. At one point a runner went across the finish line dressed as Prince, the singer, with a guitar, black wig and a purple suit. We saw two marriage proposals at the finish line. Thankfully both women said yes. However if I was one of them I probably would’ve said, “It took me finishing a half-marathon for you to finally propose?”
The crowd was filled with many families and friends who were there to cheer their runner or runners on. At one point a father and his three young children were sitting near us cheering for their mom as she went across the finish line. There was also a woman holding a sign that said, “You didn’t die!” Since I was sent the updates on my sister’s progress we were able to figure out when to pay attention for her and our family friends to cross the finish line. We spotted them and cheered as they finished, although I highly doubt they heard us. However, in the video I took you can clearly hear me cheering for them.
We met up with them after they crossed the finish line and everyone was happy to receive their medals. They got goody bags filled with various foods to eat to help restore their bodies after walking/running 13.1 miles. We stayed until the last person crossed the finish line. As she was limping towards the finish line Mickey and Minnie looped their arms through hers and walked with her over the finish line as confetti cannons went off. How many races are there that are you able to see that happen?
My sister told us during the race that she got her picture taken in front of the castle at the Magic Kingdom. She said she ran through the castle while Elsa and Anna were waving to everyone. At various miles they could stop and get their pictures taken with the Disney characters but they said the lines were long and they didn’t want to get stuck behind the people who were pacing the race. Apparently if you weren’t up to speed and got behind the pacers at the next mile marker you had to board a bus and were taken to the finish line. At the last mile she told us there was a gospel choir singing to the runners to help get them through the last part of the race.
In the end they all had fun in the race. I think the 13.1 miles part was not fun but they had entertainment along the way to help get them to the next mile. I hope they do the race again next year so I can get to go back to Disney. It was a well-organized race and fun for everyone who attended it. I know we had fun watching the various runners go across the finish line. I would highly recommend anyone who loves to run to do one of Disney’s race events. One of our family friends said she ran in another half marathon in the fall and it wasn’t nearly as entertaining as this one. Now for me, the only way I would participate in a half-marathon would be if someone else were pushing me in a wheelchair.
The last time I went away on a trip was in July of 2013, right before I was diagnosed. I spent the past year and a half at home recuperating from chemo, surgery, radiation, biopsy, and everything else that you can think of. Recently I considered a vacation to be the time period when I would get breaks from my chemo pills. I usually got breaks when I was getting really sick from the chemo and it was time to take a week off. However, in February I went to Disney with my mom and sister for a week for an actual vacation.
In April of last year my sister signed up to be in the Disney Princess Half-Marathon. It was scheduled for February and we decided we would make a trip out of it. My major concern about traveling was if I would have to take my chemo pills. I didn’t want to have to worry about getting sick or being exhausted while in Disney. The last thing I wanted was to be waiting in line for a ride and then all of a sudden get sick. Thankfully my doctor said I could take the week off while in Disney. I was more than happy not to pack my chemo pills and other random medicines.
We arrived in Disney and settled into our hotel. We hadn’t been there in over 12 years. We decided to go to the Magic Kingdom the first night for dinner and to walk around. As we rode the monorail to the park I noticed that everyone was in his or her puffer coats and boots. It was 45 degrees outside, which in my book was a heat wave compared to the negative temperatures we left behind at home. Since it was cold out, there was no line for Splash Mountain so my sister and I practically ran through the line area to get on the ride.
While we were on the ride there was one other person in the boat with us. It was a boy, who we later found out was from Detroit. As we were going through the ride he turned around and asked us where we were from. My sister told him. He then proceeded to ask, “Are you from the ghetto or the suburbs?” We both stared at him and I tried not to laugh out loud. My sister responded with, “I’m sorry what did you say?”, trying to play it off like we couldn’t hear him. When he asked us the same question again she told him, "the suburbs". After he turned around in his seat we couldn’t stop laughing. At one point we were laughing so hard I couldn’t breathe. Only we would be asked that question on our first ride at Disney.
The next day we went to the Magic Kingdom again and went on several rides. We did the classics such as Space Mountain and of course the Enchanted Tiki Room. I got to meet Elsa and Anna from Frozen. I specifically went there to get a picture for a friend since she loves them. My one doctor also joked with me before I left that some of the children at the park may confuse me with her since we have the same hair color. Luckily that did not happen. We spent the entire day at the park and had dinner at Tony's Town Square, which is the Italian restaurant from Lady and the Tramp. Everywhere we went everyone was so happy and excited to be in Disney.
The next day we met up with our family friends since they were also running in the half-marathon with my sister. We went to the running expo in the morning so they could pick up their numbers. After that we went to Hollywood Studios. We went on the Tower of Terror. That ride still scares me. You would think after 12 years I wouldn’t be afraid but, good joke. As we were walking through the hotel I could feel my stomach already turning into knots. Once we got into the ride I knew there was no turning back. As you all know the ride has a pretty impressive drop not once but 4 times. I even knew when it was coming but still screamed a lot. The photo perfectly describes how I was feeling because I looked terrified. It still is one of my favorite rides. Afterwards my hands were shaky for a little while but it was totally worth it.
After spending the afternoon in Hollywood Studios we went to Epcot for dinner in France, which was delicious. Then again all the food in Disney is amazing. I had several Mickey shaped soft pretzels while in the parks and of course the Mickey ears shaped ice cream. Another good thing about the food there is that it is geared towards all ages. Let’s just say I thoroughly enjoyed my popcorn chicken on several occasions. It was nice to be able to eat and not worry if I would get sick. Needless to say I took full advantage of it.
On Sunday morning my sister and our family friends ran in the Disney Princess half-marathon. My mom and I went to cheer them on. I have a whole post dedicated to the race alone since it was an experience in itself. After the race we went to the Magic Kingdom again and went on rides. We had dinner at the Beauty and the Beast Restaurant, “Be Our Guest”. It has three dining areas all modeled after the movie. We got our picture taken with the beast too. After dinner we said goodbye to our family friends since they were heading home the next day. They had come in for the weekend for the race. We had a great time together and laughed a lot about everything you can think of.
One of our last two days of the trip we went to my favorite place, Discovery Cove, where we swam with dolphins. I will be writing about that by it self too. You have so much to look forward to now! On our last day we went back to Hollywood Studios. I went on Tower of Terror twice with my sister and I screamed the whole time. We also went on Rock 'n' Roller Coaster twice, which was a blast. My favorite picture is one of my sister that they took right before they launch you into the ride. While I was smiling she looked scared to death. We are still laughing about the photo. We went on other rides that included the Great Hollywood Movie ride and saw a couple of the shows too. I am happy to tell you that the Indian Jones Show has not changed in 12 years. We ended the night by having dinner at the Sci-Fi Dine-In Theatre Restaurant. It is modeled to look like a drive-in theatre and you sit in cars from the 50s and 60s. While you are enjoying your dinner you get to watch old Sci-Fi movies. I thoroughly enjoyed my burger, fries, onion rings, and milkshake.
What I liked most about Disney is that no one knew anything about me. I wasn’t bombarded with people asking me how I am doing or feeling. No one stared at me because of my white hair or commented on it. They probably figured I was a super Elsa fan. I didn’t have to think about when to take my chemo or worry about the foods I couldn’t eat. I did get a wheel chair after the first day since my knee was sore from all the walking. I know my doctors will be happy I did that. My family pushed me around the parks because we were constantly on the go. It was nice to get away and go on a family vacation. We haven’t been able to do that in a long time. After we left Disney I found myself in a “Disney Depression”. I had gotten so used to the routine of getting up and getting on the monorail or a bus to go to one of the theme parks that I didn’t know what to do. Don’t worry I quickly got back into my usual routine after resting from our busy vacation.
It’s January and you are probably wondering why I haven’t posted in awhile. Don’t worry my New Year’s resolution was not to stop writing or anything like that. Instead of writing I found that I have been reading a lot more than writing. For the first time in awhile I am able to concentrate and read a book. Now mind you, I am not reading anything like Microwave For One or Dancing with Cats. Yes those are real books.
At my latest appointment at the cancer center I noticed that it was quieter than usual. I quickly realized it was because it was early in the morning. I figured they scheduled my appointment early for two reasons. First, because that worked best in their schedule or second, they have read my past blog posts and decided that I have had enough bizarre interactions for a couple weeks. I am leaning towards the second reason. It was quiet and I was ok with that. I didn’t have to worry about someone commenting on my hair or trying to talk to me. Silence is golden in some cases.
My January so far has been filled with resting, reading, and recuperating. I have had days where I’ve been too tired to do anything but stay on the couch and barely move. That’s the one thing that sucks about chemo. It eventually bites you in the ass. Literally and figuratively.
Unfortunately after Christmas my knee starting acting up again and as a result I haven’t been able to ride. I have more soreness in my knee as a result of my radiation from last year. The only upside of having to rest my knee this time of year is that it’s too cold to ride some days. Plus I don’t think Joe minds being nice and warm in his blankets. He is still adjusting to his new lifestyle and experiencing what winter is like when you don’t spend it in Florida.
I have been sucked into the world of my Kindle recently. I find that I am reading more than usual. A couple of months ago I wasn’t able to concentrate on a book. I would start to read and find that I didn’t like the book. I just wasn’t in the right frame of mind for sitting down and trying to read something. Over the past month I have read a couple books. In the past I was at the point where I was lucky if I could even finish a book. Since Christmas I have read four books and am still going. It’s funny how certain books fall into your lap or you hear about them on TV at the right time. For now I will enjoy being able to read again. It’s nice to take a break and enjoy what other people have written.
Although January is a new year it seems to bring out the negativity in people. It seems all I hear lately is everyone bitching about the snow or how dark and dreary it is outside. Don’t even mention the cold. I have had my share of days where I have been freezing my ass off. Maybe they forgot it’s winter? The other day I was out to lunch and I overheard someone say they were moving away. Their reason was, “because this area is too dark, cold, and depressing” and as a result they were “so over it”. I am not sure why but that comment made me want to turn around and say, “with that outlook on life I think you’ll find flaws in everything. It’s all about perspective.”
We all want it to be warmer and less dreary. Unfortunately winter means cold and blah days. Enjoy the sunshine when you can. Hopefully you aren’t trapped in an office of windows otherwise it will feel more like an oven than work. Just remember spring is coming slowly but surely. For today try and enjoy the snow outside your window.