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 

19 comments:

  1. You're a rockstar Camille! I'm so sorry you had a bad reaction to the drugs. I'm so glad you are being well taken care of at Stanford. Hoping your neuropathy does not get any worse and goes away once chemo is done. I'm sad you will lose your hair again. That bites! Keep fighting! You will beat cancer!!

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  2. My darling Camille...reading your blog breaks my heart because I can't help make it better for you. Nevertheless, your perky, positive spirit tends to poke out in some of your comments. I know you will be an overcomer but the next months will be trying on your body and spirit. Just try to take one day at a time and reach for the light at the end of the tunnel. It will be there. You are in our thoughts and prayers continually and our hearts are beside you every step of the way. Let us know when you are ready for another visit from us and if you can bear a few more of Grandpa's corny jokes.xxx

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  3. The side effects sound horrible. Hopefully things will improve for you moving forward. My 25 year old son is day +19 from having an auto stem cell transplant. He's getting stronger every day. Keep fighting. You can do this.

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    1. Dear Camille, your attitude and strength are an inspiration. I hope yo don't have any more rough reaction! Stay strong and I'm glad you will have the bike in your room to keep yourself busy.

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  5. Hi Camille ~ sorry to hear of the difficulty you experienced with this latest round of treatment. Your strong spirit is serving you well, and will continue to do so as you work your way through the stages ahead. My family is following along and thinking about you, and hoping for the best of outcomes. And yes, your parents and sisters rock, and your mom will enjoy her vicarious journey to Singapore through Flat Kerrie! Lots of love ~ Mary Lou

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  6. You are such an inspiration, Camille! Keep fighting this horrible disease, because we are ALL praying for you! I'm so sorry you have had a hard time with this trial. I pray that that bad reaction never repeats itself. Your blog is so important, and reminds me of my sorority sister who blogged while going through breast cancer years ago. She is now a Survivor, and we laugh about her funny entries she wrote on her toughest days. (She has a great sense of humor!) Maybe later you can write a book, and Hollywood can make a movie about you! You are a hero. Hugs from the Kantz family. ��

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  7. Our thoughts and prayers are with you! You WILL get through this. Keep up the awesome attitude!

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  8. SO Sorry you are suffering. You will beat this God is on Your side :)

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  9. Your such a strong person, thank you for sharing your story, you made me understand things I didn't, my son who is 4 years old relapsed and he will be getting a stem cell transplant around March I'm so scared for him! But I know you and my little guy will win this!! May god bless you always!!

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  10. Flat Kerrie is taking notes in Singapore and Bali so that Mommy Kerrie & Camille can visit there TOGETHER in the near future!

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  11. Wrote a comment and then Googie dissed me at signing in! Sigh ! Anyway love and support and always thinking of you at the Morgan household.⭐️⭐️⭐️⭐️⭐️

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  12. I'm sorry you had to go through this bad reaction. You're in my prayers! Keep your head up. Wish you the best!

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  13. Sorry this was a rough week. I can tell you first hand everyone who works in the Stem Cell transplant section of the hospital was amazing. I was impressed with even the worker who cleaned the room. They were very great with visitors. Wishing you the best, stay strong, you can do this!!!!

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  14. I stayed at Stanford for a week when I was a little girl and they give you all sorts of perks. Your being super strong and you have an amazing Mom. I may start treatment for my Scleroderma and it could be for a clinical trial. I have not had a horrible disease like yours but an invisible one for over 12 years. If I'm at Stanford getting treatment during your 21st if anyone knows how to have fun while being sick it's me...you might get a surprise visitor ;)

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  15. Camille, I'm sorry this treatment is so difficult. Please let me know if I can help in any way. Sending love and hugs to you and your family. Beverly Herrera

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  16. Bold and Beautiful Camille! You sincerely are an inspiration to me with your strength and grace. It shames me to think about all the times I have felt sorry for myself when things are aren't going just perfect. Thank you for being my teacher. You continue to be in my thoughts and prayers. Although I know you have a strong support system, please let your momma know I am here for anything you guys need. I am simply a text or call away. Stay strong beautiful girl!

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  17. You are in my thoughts. Please continue to stay strong. Hugs <3

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