Wednesday, May 4, 2016

Update since my Last Blog Post-


~I celebrated my 21st birthday on April 5th! I was feeling rather fatigued and a little nauseous throughout the day (from high dose chemo on March 29) so I stayed at home and didn't do much. Fortunately, my Grandpa, Aunt and baby cousin came to surprise me from Orange County for the day so I spent it with them at home. I didn't have a typical 21st at the bars with friends but my mom and Sam Theard helped plan a small get together for me on the night of my birthday- they put an announcement in my Carezone site to text my mom if toasting my 21st at Handles that night was going to happen. My mom was able to sneak me out. It was perfect!



~Unfortunately, a few days after my birthday I had to rush to Stanford for an unplanned visit because I had gotten a huge rash on my chest that was getting worse and I was experiencing a lot of pain in my left arm where my port was inserted. My doctor was afraid that I had a  blood clot from the new port. I spent the whole day in the Infusion area getting different treatments to get rid of the rash and clot. By the end of the day, my teams of doctors and nurses decided that to get rid of the rash, I would have to get this port out after my stem cell collection and get a PIC line put into my arm. To get rid of the blood clot, I have been put on a blood thinner injection called Lovenox. My parents have had to give me shots in my stomach every morning and night for the past month. My doctors told me I will probably have to do this for 5 more months  :(

~On April 10th, I had stem cell collection day. This was a big day in my Bone Marrow transplant journey because it meant that I was off "house arrest" and wouldn't have to wear the huge mask outside or follow a strict Low microbial diet for the next few weeks.

I didn't mention this before but since my last high dose chemo (called Cytoxan) on March 29, my parents have had to give me two Neupogen shots in my stomach to stimulate the growth of white blood cells in my body. This is a very important factor for a Bone Marrow Transplant because not only is it fighting infections, but also my bone marrow needed to be easily accessible for the stem collection day. But with this important shot came bad side effects, I was constantly feeling nauseous and had MAJOR bone pain towards the day of collection. I could hardly walk and got random stabbing pains in my hips and forehead. So after my blood clot, I was getting 4 shots daily in my stomach! It was not my favorite part.. but my parents are pros at giving abdomen shots now ;) Fortunately, I stopped the two Neupogen shots on stem cell collection day and I am just doing the two Lovenox shots.

During the stem cell collection, I just had to sit in a chair like chemo and watch my stem cells come out of my body and get centrifuged in a large machine. Our goal was to collect 4 million stem cells and we were able to collect 15 million! These stem cells were sent to a special freezing unit at Stanford until my Transplant where the cells would go back into me on May 9. Science is crazy!




~I travelled to New York City and Long Island with my mom for a long weekend! Since my birthday was just a few days before my trip, my grandparents treated me to my ticket to NYC :) In between chemotherapies, I was given a "vacation break" from cancer so I wanted to be able to take advantage of this to celebrate my 21st and do something fun before I was in the hospital for a month. I had to have someone with me 24/7 due to the blood clot, so my mom was happy to travel with me.

 In just a few days there, we were able to accomplish so many things because luckily, I was feeling okay! The Smith family treated my mom and me to Book of Mormon broadway show tickets because they heard that I really wanted to see that show :) It was so much fun and I was laughing the whole time! We also visited the 9/11 Memorial museum.. best museum I have ever been to. I could spend hours in there. Rodelyn, one of my mom's closest friends from Dublin was able to meet us in NYC for a two days because she can fly standby! We did a carriage ride through Central Park, had "Breakfast at Tiffanys" and got to see a taping of Saturday Night Live!!!! My mom's friend Colleen has a friend that is friends with Jon Hamm and he hooked us up with tickets to see Nick Jonas as the performer for the show that night. I was pretty excited :) And finally, the night before we went home we got to go to the sold out Hamilton show!! My mom's friend used to be a broadway dancer and she knew the choreogropher so we got great seats for the show and were able to go backstage to meet the cast after! Great end to an even greater trip!



Had to wear a mask on the airplane so that
 I wouldn't get any germs





Towards the end of my trip, my hair started to fall out from the chemotherapy so my mom and I decided to find a Barbershop while we were walking through SoHo. He did a great job and I was able to rock a cute pixie for a few days :)
















~A few days after New York, I realized that my hair loss was getting worse so my family's dear friend and hair dresser Elizabeth Ponce offered to shave my head again (she did it for me last year during my 12 rounds of chemo). I was lucky to have my mom and Sam come to support me. I shed a few tears during the shaving but it was definitely easier the second time than the first





Flash forward to today.... I am officially in my isolation part of the Bone Marrow transplant! I am so close to the finish line!!! Just 4 weeks in the hospital and then I will hopefully be done with cancer for good!!

I arrived to Stanford hospital around 6 pm last night and wasn't given my chemotherapy until 2 am because I had to be hydrated for a long time before. I am grateful that my mom was able to spend the night with me. I will be in a double room with another female patient going through a transplant until my white blood cell count goes down then I will have a private room.. Probably will be in a few days because I have chemo again tomorrow (#22) (Thursday 5/5) and Saturday #23 (5/7). Then my "re-birthday" or official Bone Marrow transplant is on May 9. This is the day that my stem cells that were collected a few weeks ago will be put back into my body to regrow and eventually help put me into official remission. I have had a few people ask me when the surgery is.. the Bone Marrow Transplant is not a surgery. The procedure is simple and is an infusion through my PIC line

~In the hospital I hope to get some things done that I have always wanted to do! For example, I want to learn how to solve a Rubik's Cube! I also hope to start an online class or two during my 3-4 week stay at Stanford hospital. Visitors are welcome as long as they aren't sick and I am feeling okay.

Some people have been asking for my address to send me a letter or note. 
300 Pasteur Drive 
Stanford CA
BMT unit E1 Room 37
94305

Sunday, April 3, 2016

I Can-Cer Vive.

Long time, no Blog!

These last few weeks have been so so busy for the Chabot family.

I finished Winter finals at Cal Poly San Luis Obispo, and moved out as much stuff as I could by myself. And with God's help I was able to figure out my apartment sublease just one hour before I left to go back to Dublin! Luckily, now I won't have to stress about paying for SLO rent while I am at home for treatment.

My "spring break" was definitely not spent like the majority of my college friends. I had appointments at Stanford almost everyday last week. First, I had my PET scan to make sure that the 4 trial infusions went well (and they did! yay!), then I found out that the trial basically took away my thyroid functions so I had to meet with an endocrinologist to be put on thyroid medication for (probably) the rest of my life.

Since the PET scan looked good, my oncologist gave the go ahead for continuing with the Bone Marrow Transplant plan. So I also had a few intense meetings with the Bone Marrow Biopsy Team. These meetings were full of tears and too much information about the strict diets, and restrictions that I will have to be following for the next few months. I also learned about the new port that I had to have. During my first 12 rounds of chemo last year, I had a port surgically put in that a lot of people probably never noticed because it was hidden under my skin, by my left collarbone. Well this port is very different. Not only is it uncomfortable but it's extremely noticeable. There's two IVs hanging out of me and I have to have it for 2 months :( My parents and I had to go to a class where we learned how to clean and the port, and change the dressing for it. That's going to be my parents job every day for the next two months!


One of the "normal" things I got to do over break was see some of my high school friends! It's finally that time of our lives where we are all turning 21 so I got to go out to dinner with a few of my best friends from high school to celebrate Karim's 21st! I'm sad they will be away at school for my 21st, April 5. But I know we will be able to celebrate together once I get past this.

After a long week of appointments, my trial coordinator called my mom and me while we were driving home from an appointment (where we had just seen him an hour before) and he claimed he had "one last request" for the trial.... a bone marrow biopsy.  If anyone doesn't know what a bone marrow biopsy is, it's a painful procedure where the doctor takes a piece of your bone in your back pelvic area to examen for cancer staging, or whatever reason. Well, turns out my bone marrow biopsy would be for the trial, and not really for "my benefit". I decided to continue with the procedure to help future cancer treatments and patients with Hodgkin's Lymphoma. I did this type of biopsy back in 2014 when I was first diagnosed with Hodgkin's but it was much more painful this time. Instead of using only a hand screw to get the marrow, the doctor at Stanford used an electric drill that basically sounded like I was in Home Depot. It was a very, very painful and uncomfortable few minutes. I have still been dealing with back soreness and pain since the procedure last week.  The pain is worth it if I know they are using these results for a cure.

My parents and I planned on spending Easter weekend in San Luis Obispo to get my big furniture from my apartment and put in storage for my senior year at Cal Poly. Since I was still in pain from the biopsy, my parents decided to go without me. I was very grateful that they were willing to do all that for me in less than 24 hours. I am still laughing that my parents left for SLO around 10 am Saturday of Easter Weekend and didn't ask for my address to my apartment until 10 hours later... Lol typical Chabot but it all worked out! My furniture is now moved out and put into storage for next year when I know I will be done with this cancer treatment and back at SLO!!!!!

The rest of this week has honestly been a blur. I had to bring up a calendar and clarify the days with my mom because I honestly hardly remember what has happened this week:

Very early Monday morning, I had that new port put in that I talked about earlier. I know have to be super careful when I take a shower, and no pools for the next few months!  A few hours after the surgery, I had to go back to Stanford and get my IV "buddy"  for the night. This is when I really started to get emotionally drained. If you have ever seen A Fault in Our Stars, I felt like the main character for 48 hours. I had to lug around a horrible wheely backpack full of IV fluids that were going through my new port. These fluids were to help prepare my liver for the intense chemotherapy that I would be getting the following day. (I also had to constantly pee for 48 hours straight.. that was no fun). My mom had a very long training for all of the potential alarms that could sound from this bag. Next, we went to dinner and I burst into tears at the dinner table from exhaustion, the stares from strangers and embarrassment of walking around with an IV backpack "buddy".

Tuesday was a big day for me. I spent the entire day in a hospital room in the Cancer Center at Stanford, getting Cytoxan- a very high dose chemotherapy. This was my first of five different chemotherapies that I will be getting over the next two months. I was very lucky to not only have both my parents with me that day but also my best friend from elementary school, Sam!! Sam made it to all my chemotherapies last year and even made cute countdown signs. She has been a great friend over the years..  she truly sees what I'm going through on this journey. I'm very lucky to have her close by! We spent the day ordering room service (the hospital had surprisingly good food), laughing, reading magazines, and also talking to a lot of doctors. I still have to ask Sam or my parents to remind me about information that was given to me during chemo because I hardly remember that day. The "chemo brain" is so REAL this week. I have been losing my train of thought within minutes... it's a little embarrassing. I feel like I'm 90!

The hardest part of that day was getting my mask. I have to wear it for the next two weeks to really keep myself safe from outside germs. the only place that I don't have to wear the mask is in the house. It's a hepa filter mask and I feel like a complete weirdo in it. When my nurse turned on the information video about the mask during chemo, I burst into tears. I can handle the chemo, and the shots, and the poking for blood, but wearing a huge mask in public for the next two months? I wasn't ready for that. My dad had to leave for work at this point in the day, but I was happy to have my mom and Sam with me while I got fitted for my mask and learned the rules. This mask is the same exact one that a construction worker would wear on site, it's made by 3M and I was surprised it was the same one given to cancer patients. I tried to make myself feel better and made a joke about how the sides of the mask looking like pink whoopee cushions. Then my mom and Sam decided they were going to order their own masks so they immediately went on Amazon prime, and ordered their own hep filter masks. I told them to stop and that it wasn't necessary but they didn't listen to me. I am truly grateful to have such an awesome support system.

After chemo, I thought I was feeling a little better so Sam and I went to Trader Joe's to get my mom some flowers and chocolate. My mom has been so strong through this new journey and I could tell she needed a pick me up. She had just had a major crying episode because she was lost in the Stanford parking garage for almost an hour looking for her car. Luckily the security guard was able to help her find it. As we walked out of the car with my IV "buddy"backpack  and mask and into Trader Joe's, I started to laugh because I just felt so funny and I knew I must have looked like a weirdo but seconds later I started to cry. I ran out of Trader Joe's and sat on a bench. Crying and sitting on that bench was the worst feeling in the whole world. I felt completely helpless, and was almost afraid I wouldn't be able to make it through my cancer journey this time. Sam sat with me. She helped me regain my strength to get up and go back into Trader Joe's to get what we wanted. I honestly don't think I could have done it with anyone else- she always knows how to make me feel better. I ignored the looks from strangers and kept my head down. I wanted to get out of there as soon as possible but kept my strength and stayed inside. As we walked out with the sunflowers and chocolate for my mom, I felt like I had just accomplished my first big cancer task. I felt relieved. I knew I would slowly be able to do this.

We got to the hotel. And the helplessness started again. Right when the elevator doors opened, a young man in his 30's jumped at the sight of me and said "Wow! you scared me". At first, I started to laugh because I am sure that this man was not expecting to see a girl with big black rolling backpack  with tubes and wearing a huge gas mask.  But right when we got into the elevator, I burst into tears again. I knew this was going to be a long few weeks with the mask... But I know I can do it.

I'm slowly but surely getting used to wearing the mask out of the house . Yesterday, Sam and I went to the mall because I had a few exchanges to do. I was dreading leaving the house for the last few days because it requires me putting on the mask. Sam wore her hepa filter mask that she had ordered on Amazon. She really made me laugh because she made covers with dollar signs for her filter. As we walked into Nordstrom, we were both afraid of the looks. I told her she could take off the mask whenever she wanted but told me she was going to follow the exact rules I had to follow. She has given me confidence to wear the mask in public and still continue to do my daily activities during this journey.

Everyday is slowly becoming a routine. In the morning, my dad has to give me two shots in my stomach to get stem cells ready for Apheresis (this is planned for about April 9th where I will be getting all my "healthy" stem cells taken out of me and put into a freezer). I have a lot of medication to take through out the day. And then at the end of the night, my mom or dad have to "flush" my new port to make sure it stays clean. They had to be trained in this in order to send me home (photo above).

My chemo brain has been worse than it ever was during my 12 rounds of chemo last year! I don't know if it's just because this was a different type of drug, a higher dose, or because I have had so much information given to me in the last few days... but I am having a hard time remembering everything! Even writing this blog post is a bit of a struggle. Because of this, I haven't added to my online classes yet. My brain isn't ready for that much information lol. But in a few weeks, when my chemo brain gets better, I hope to take one or two more online classes. And hopefully get the okay from my doctor for a one week vacation before entering the hospital for a month.

My strength and energy are minimal due to the Neupogen shots I receive everyday. I am having a harder time walking around the house and catch myself panting for breath. I can only stand up for a few minutes before my legs start to hurt or ache but my parents push me to go on walks everyday so I can continue to get exercise and keep up my strength.  What gives me the most strength is all of the shout outs and community support. From the Castlewood/McGrath Irish dancer auction to the meal train, house cleaning and daily #CamilleStrong posts and little gifts I find by the door step. Thank you Thank you. Thank you.
Castlewood McGrath Irish Dancer auction with my cute parents and sister 


Have any more questions?? Please ask! I don't bite!! (especially when I'm wearing the mask)



Sam and I wearing our hepa filter masks



Mask selfie. 

Sunday, February 28, 2016

Feeling weak after last week.

I'm currently in a hotel room (by myself for the first time ever.. thanks mommy for trusting me ;)) in Palo Alto for only 14 hours because the clinical trial needs post blood samples from treatment #4. I tried to work my way around having to come back here just for 10 minutes of blood draws but the clinical trial has strict rules.  I'm worn out from a week of treatment and classes, from driving here and knowing that I have to drive back to Cal Poly tomorrow. But hey, good news is I finished my last clinical trial treatment last Monday!! Hip hip Hooray! Now let's pray that my PET scan shows that the trial medicine worked and I can move on to the journey of my Bone Marrow Transplant.

Last Monday went smoothly and that's what matters. As I mentioned in my previous blog, my oncologist gives me Benadryl and steroids before the clinical trial drugs to stop any allergic reactions from happening like they did for treatment #2 because I did NOT want to ever feel like that again. So of course, the Benadryl put me right to sleep and I slept during the whole treatment!! All 5 hours! That was pretty awesome to fall asleep and be woken up by my nurse saying "Hi honey, you're all done for the day, you can go!"

After treatment, my mom and I met up with Julie Lin at the Stanford shopping mall. She's one of the only women that I can talk about makeup with and she knows all the brands I'm talking about it! Lol I love it. We shopped around and had a yummy dinner.

I had to spend another night in Palo Alto, and the following morning(Tuesday) I had some blood draws and then drove straight to San Luis Obispo to make my afternoon math class. My mom and the  Chalker family convinced me to get the Audible app for these long drives so I started Amy Poehler's book for the drive back to school! So far, I was feeling great and no fatigue from treatment.

The rest of the week was hard. I started to feel weak, as if I had just run a marathon. I was tired from just walking from my car to my apartment. During chemo I would feel this same way, and I hated every minute of it. Just like my mom, I'm an on-the-go type of person! I don't have time to feel weak and stay in bed. I had to make up a midterm that I missed from my treatment day, and my homework load felt like it was getting bigger by the minute... At one point, I called my mom in tears. I was overwhelmed.  I also didn't have much of an appetite this week. I mostly ate tangerines and quest bars.

But it's now 6 days since treatment #4 and I'm finally feeling better!!

Only two more weeks left in Winter Quarter which means only 2 weeks left in San Luis Obispo before I have to officially move back home :( It's sad to think about but I'm ready to beat this cancer again!!

I'm procrastinating an essay and presentation due in a few days to write this blog post about treatment #4... lol I guess that's the life of a college student going through cancer treatment!

Spending the day in Napa before treatment #4

Shopping and dinner with Julie in Palo Alto

Matching Mommy and daughter shoes :) 



Friday, February 5, 2016

One. More.

         Whenever I have treatment, my mom and I try to make a little "trip" out of going to Palo Alto. We attempt to get to Palo Alto mid afternoon on Sunday to be able to spend the afternoon at their beautiful downtown. (But if anyone knows my mother, they know this is impossible since she is a very, very busy lady). My mom has quite a few places to eat downtown that she has heard about so we love to check those restaurants out! So for this treatment, my mom and I were able to see a movie together on Sunday night and then spend the night before I had treatment #3 on Monday (2/1) morning.
       The Friday before treatment #3, I had a scheduled CT scan to make sure this treatment was reducing the mass in my chest. Laurie Smith, a mother I babysit for, offered to come with my mom and I to my appointment. Laurie and her family have been so supportive these past few years. Shout out to the Smiths! We went to my CT scan and then ate dinner in Palo Alto.
       I was nervous for this treatment. Like reallyyyy nervous. Treatment #2 went so horribly wrong and was worse than any chemotherapy. Because I had such a bad reaction to the trial last time, I had to skip a whole week of college :( That was hard for me. Soo you better believe I was hoping this treatment would be nothing like the last!!
        I started my normal routine on treatment day by getting my blood drawn (always at least 10 tubes), meeting with my oncologist and then starting treatment. I was anxious to speak to my oncologist because I wanted to find out why I would react so strongly to treatment #2 but not #1. My oncologist tried explaining to me that the antibodies in my body weren't expecting to be getting this immunotherapy again so I had an allergic reaction. She tried to explain that stuff like this happens sometimes, but no one in her trial has had such a strong reaction like I did. We also talked about my CT scan results from Friday. Turns out the mass in my chest hasn't decreased in size... my oncologist told me not to worry because the drugs that I am getting sometimes enlarge the mass at first. When I heard this, I had so many questions. Like, Then why the heck am I getting a CT scan right now if this could be a "fake" enlargement?? Does this mean the trial isn't working and I need chemotherapy before the transplant?? Unfortunately my oncologist isn't able to answer any of these questions. We are going to have to see when I have my PET and CT scan after the trial is over, scheduled for March 17. Pray that my scans will show a decrease in the cancer!!
        Overall, treatment # 3 went well.. Thank God. My nurses gave me Benadryl and steroids before the drugs to make sure I didn't have any reactions like last time. And I didn't! Yay. We just decided to have the drugs go into my system slowly. Instead of being there for about 2 hours, the drugs took about 4-5 hours to go into my system. It was a long day at Stanford, but it was worth it to not have a reaction. During treatment, I slept since I was so tired from the Benadryl.
        After treatment, my mom and I went to Nordstrom and dinner so that we wouldn't be stuck in rush hour Monday traffic. I didn't mind this because I was feeling okay and I LOVE shopping :) I treated myself to a new pair of shoes and my mommy bought me a new shirt for a Valentine's Day present.
          The following morning, I headed back to San Luis Obispo around 4:30 am so that I could make my Tuesday morning class and tutor elementary kids in the evening. I am now back at school until treatment #4!!! (on Feb 22) I am lucky to have my 3 professors willing to work with me and my crazy schedule.

My hair is starting to fall out... :( I didn't think that it would happen during this trial. I hope I don't have to cut it any time soon. My mom has become so interested in food to heal cancer... we still strongly believe that my hair stayed for so long last year during chemo because of the way I ate!!

P.S- We finally got my Bone Marrow Transplant schedule. My sister says she feels like I am a celebrity because I get all my appointments scheduled for me and I have so many "managers" and phone calls with drs. Lol! I wish I felt that way.  If all goes well with the trial and the mass in my chest decreases, I will be spending a lot of time at Stanford for stem cell retrieval and a few rounds of chemotherapy. I am scheduled to live in the hospital for the month of May. I'm just happy I don't have to live in the hospital on my 21st birthday (April 5)!!! My mom and I were hoping to go on a trip to Singapore to see her best friend before I was admitted to the hospital... but I think I won't be allowed to. Hopefully in the near future!!

P.P.S- My mom told me that a meal train has started for my parents and little sister at home.. How lucky am I ??! I live in a great community. Thank you so much!!!
Treatment selfie with mommy

Free massages for patients and caregivers! My first time having time to take advantage of this

Im under those blankets.. somewhere lol 
Normal amount of blood taken..each time

Saturday, January 16, 2016

One of those weeks...


I'm going to be honest.. this round of the clinical trial has been horrible. I thought the clinical trial with Stanford was going to be easy and simple. I planned on being able to come home for the weekend before a treatment, miss Monday of class and go right back to Cal Poly as if treatment never happened, but I was wrong.  Cycle 2 was on Monday, January 11th and it went horribly.

For this round of treatment, I decided not to have any visitors. I was happy to have both my parents there with me and being able to just watch some Netflix. Well thank god I didn't invite any visitors because it would have been a horrible scene for anyone around me. Within five minutes of the first drug, my body wasn't reacting well to the treatment. My body started to get really hot, I could hardly breath, and I started to get rashes all over my body. A few minutes later, I threw up my entire lunch and my nurses had to inject Benadryl and steroids into my IV. After about 30 minutes of being nauseous, I was brought into a personal hospital room to sleep. At this point, I stopped the treatment.

By mid afternoon, my doctor decided to try giving me my clinical trial again. I started to get itchy rashes all over my body again but we continued with the treatment. By 5pm, the Clinical Trial Unit at Stanford was closing so I was going to have to come back the following day for my second drug. My parents and I had already been at Stanford since 9am. It was a long day for us. Right away, I had my mom call Amtrak and cancel my midnight bus ticket back to Cal Poly. I wasn't going to get to go back to school this week. That was really stressful for me but I am lucky to have three professors that are very easy to work with and don't mind me missing class.

On Tuesday, my mom and I went back to the Clinical Trial building to get treatment drug number 2. Luckily, everything went smoothly! I was able to get my treatment and leave within 3 hours. That's a short day compared to normal days at Stanford!

I still don't completely understand why I reacted perfectly fine the first two times but then had a horrible time with treatment this week... my nurse was explaining to me that my body probably wasn't expecting to get the treatment more than once so my antibodies weren't ready for it. Because of this, I had a sort of "allergic" reaction to the B drug on Monday.

On Thursday, January 16, I also had my Bone Marrow Appointment with my new doctor and social worker. I'm at Stanford too much these days! It's my mom and my "home away from home". So here's what I learned at my Bone Marrow Transplant appointment...

  • Bone marrow and stem cell transplant mean the same thing. You might hear me use either term over the next few months
  • I am having an "AUTOLOGOUS" transplant which means I will being using my own bone marrow for the transplant... Thank you so much to everyone that has offered to donate but I won't need you to:) Luckily an Auto transplant is much less tiring and time consuming than an Analogous  (using donor marrow) transplant.
  • I will have to take off from Cal Poly SLO for Spring quarter. It will be too dangerous health wise for me to stay in school
  • I bought tickets with my friends to Stagecoach for the end of April. It's a country music festival in Indio, California. Looks like I won't be able to go so if anyone wants my ticket then let me know!
  • I might be spending my 21st birthday in the Stem Cell transplant hospital.. That will be a birthday I'll never forget
  • I will be losing my hair again :( 
  • I will be going through a few rounds of intense chemotherapy again. This will right before my transplant so that my blood cell count goes down before the transplant
  • Might not be able to study abroad in Lyon, France this summer. I was planning on taking a few French classes over the summer for my French concentration and minor!! But looks like I might not be able to fly or be too far away from my doctors at Stanford for 6 months after the transplant.
  • I will have to live in the hospital for at least 3 weeks
  • I am allowed to have visitors while I am at the hospital. Please come visit me!!!!!
  • Still don't know the for sure dates for the transplant but I think it will be around end of March and April 
When I met with the social worker this week, I was able to take a tour of the hospital room that I will be living in for a few weeks. For the first week, I will have a roommate with me that is going through the same procedure. Then for the next few weeks, I will have my own room where I won't be able to leave the room because of the bacteria. My doctor even said that I will get a stationary bike in my room so that I can get up and move still. That makes me happy!!

During my bone marrow appointment, my doctor also gave me a paper for me "last wishes" if I were to die. This was a scary piece of paper to see... I have to fill out information about what I want my doctor and family to do if my heart were to stop beating, or I couldn't wake up. My doctor warned me that this paper will probably never be used but it's a precaution before a big procedure like a Bone Marrow Transplant. 


Shout out to my Mommy that had to give up a trip to Singapore with her best friends to take care of her sick daughter with cancer. My mom has been so awesome this past year and a half.. this was just one of many things that she had to give up over the years.

Got my Invisalign retainers yesterday.. I have to wear these bad boys for at least 20 hours a day until April or May! I feel like I'm in middle school with braces again.

And right now, as I am writing this blog post.. I'm out of breath and can hardly feel my fingers and toes. I never had side effects like this during my 12 rounds of chemo so this is new to me.
Being dramatic 
Rashes from the treatment 
Sleepy from the Benadryl 

Wednesday, January 6, 2016

Cycle 1? Done!

Both days of Cycle 1 (out of 4) are done!!! For this clinical trial, my doctor wanted for me to get the two drugs used in the trial on different days so that my nurses could watch for my reactions and make sure I took them okay. So on December 21, I got the first drug and on December 28, I got the second.

For the Day 1, I was lucky enough to not only have 1 friend come to visit me but 4!!! My best guy friends Ravi and Karim drove from Dublin to be with me on my first day of treatment and also my two best friends from college live near Palo Alto so they were able to be with me as well. The day didn't start off too well because not only was the Cancer Center at Stanford running late, but I forgot to get my blood taken at the walk in clinic an hour before my appointment with my oncologist. My trial manager and nurse were a little frustrated with me. It isn't like me to forget important information but hey, I have chemo brain!!! ( I use this excuse for too many things). So after going back for blood and meeting with my oncologist, I was finally starting treatment.. about two hours behind schedule. Psychologically, this treatment feels just like chemotherapy. The treatment is going through my port, I have to sit in a big recliner chair for a few hours, and walk around with medical machine on wheels if I have to go to the bathroom. The clinical trial treatment for the first drug probably took about an hour, and then I got to go home by mid afternoon. After the blood draws, meeting with the oncologist, and treatment.. I was probably at Stanford for about 7 hours. These cycles are going to be long days.

For Day 2, I was lucky enough to have my grandparents drive up from Southern California to be with me!! My grandparents were never able to come to any of my 12 chemo treatments so right when I was diagnosed as relapsed, my grandparents promised they would be with me for one of my clinical trials. My grandma was diagnosed with breast cancer over 30 years ago so she has been full of advice over this past year and a half! My dad and mom were with me as well. My dad likes to come on his motorcycle to visit me at Stanford and then goes straight to work! And of course my mommy was with me.. she hasn't missed a single appointment or treatment since I was diagnosed a year and a half ago :)

You're probably wondering how my body is taking this clinical trial.. luckily I haven't felt anything at all!! It's amazing. Once I get home from treatment, I have been able to go about my day. I even went to Nordstrom (my home away from home) after Day 2. My oncologist has 2 other patients going through this clinical trial and they have complained about rashes and fatigue but that is about it. Maybe I will have these side effects in the next three cycles.

Cycle 3 will be on January 11. Usually, these Cycles are supposed to be every other week but with the first Cycle split up into two days and then the Monday holidays in January and February, the treatments will be more like every 3 weeks.

On January 14, I will be returning to Stanford to meet with a Bone Marrow Transplant Specialist to finally get all my questions answered about the transplant process. I have been lucky enough to have so many people ask about donating their bone marrow so I will let you guys know soon enough! Please pray that this meeting will go well.

I'm back at school at Cal Poly San Luis Obispo now!! We started school this past Monday. I had to miss my classes on Monday because I had a blood draw appointment at Stanford but I came to SLO immediately after. Unfortunately, one of my professors wasn't willing to work with me missing classes due to treatment so I had to drop a class. I am now in 3 class (12 units) and starting an online class at Ventura Community College next Monday. I know some of you might think I am crazy, but I'm a nerd and hate to fall behind in school! I also love to keep myself busy. While I am at school this quarter, I am also tutoring for 2 different families with elementary kids a few times a week.

Check out this video of me dancing' the cancer away during Day 2 Cycle 1 - https://www.youtube.com/watch?v=DTsTHjle70U


My grandparents came to visit me for Cycle 1 Day 2
Got to visit my best friend Maya in Oregon for NYE


Best friends from home 


My friends from college 


My sister and I goofing off in my doctor's room

Friday, December 18, 2015

I am enrolled at Stanford! (kinda)

Hello all! I am going to try to write a blog post every week, or whenever I get a chance. I feel like it is important to update all my #camillestrong supporters!

Finals are over and I am back at home before school starts again the first week of January! This week has been never ending. Started the week off on Monday by meeting with my fertility specialist with my parents. My doctor was afraid that my egg count would still be low like it was a year and a half ago before I started chemotherapy but we decided to still draw blood and find out if my egg count would be high enough to retrieve eggs before the clinical trial and bone marrow transplant. A year and a half ago, I think my doctor said that my level for that certain hormone (for egg retrieval- but I forgot the name of it) was around 0.1 and they were expecting a 19 year old female to be closer to 2.0… so we were afraid that there was no use in doing the daily shots and freezing my eggs this year unless my blood results showed over 2.0

Unfortunately, we got the call on Wednesday morning that my blood results weren’t high enough and my doctor did not recommend the time, energy and money in freezing my eggs this year. I was heartbroken to hear this news but I know that God will find a plan for me to have children in the future.

Since freezing eggs aren’t going to work, my oncologist and her team decided for me to start treatment for the clinical trial this Monday... December 21 around 11am!! I am going to be getting an infusion for the first drug called brentuximab. This infusion should last about an hour. Then I will get the second drug, nivolumab, on December 28th. Today, my mom and I got to see where I will be getting treatment. My nurse warned me that I am only allowed to have two visitors at a time.. and if anyone visited me for chemotherapy they know that was an issue! I loved having visitors and I always had at least 5 people coming to see me… let’s just say my nurses were constantly frustrated with me but I need my #camillestrong supporters!! I know Palo Alto is a long drive, so we will see how this visitor rule goes :) 

            My treatment schedule looks like it will be 1 to 2 times a week for the first few weeks to make sure I am feeling and reacting okay to the drugs. Then I will get the two drugs together every other Monday until end of February.

            Still haven’t figured out a set plan for Winter Quarter at Cal Poly. I am enrolled in 16 unites (4 classes) and I hope that I can balance both treatment and classes. I need to email my professors over break to see if it is a possibility to be missing Mondays and possibly Tuesdays as I travel back to SLO after treatment.

            Throughout this week, my mom and I went to Stanford yesterday and Today for testing before I start treatment on Monday. I have been in contact with my coordinator for the trial so many times that I added him to my list of favorites on my phone! Lol! We have to talk almost every day so that he lets me know when and where my different appointments are around the Stanford campus. Yesterday I went to the wrong place two times because I was so confused. I know I will get used to the campus and schedule during my 4 months of treatment here!

Besides oncology appointments at Stanford this week, my mom also wanted me to meet with my orthodontist to make sure my teeth hadn’t moved since I had braces in 9th grade. Well, lucky me.. my teeth have moved and I need to start Invisalign for 6 months. Just another medical thing to add to my list but Ill be okay! Just don’t make fun of me if you see me around talking with a lisp :)

Here’s a little bit of information about the trial  I will be a part of… I am only 1 of 3 patients at Stanford!!! And 1 of 6 around the country! I think that is pretty cool. http://med.stanford.edu/clinicaltrials/trials/NCT02572167


Can't take the PFT seriously!

Lookin' good with all my EKG cords

Planning the next 4 months of my
life with my trial coordinator 
My cutie Luna on my lap
 while I write this blog post