Several months ago, I posted the story of Heather Von St. James, a mom, wife, cancer survivor, and advocate. Heather has a clear mission: to help other patients, raise awareness about Mesothelioma, and share a message of hope.
This is her story.
Love, Bea
2013, a year that starts with a new look (I am bald now) and a new treatment.
Although we were very busy during the holidays, we had a great time. My parents and younger sister spent Christmas with us. We had a Mexican/American holiday dinner on December 24 that was delicious. It was great having them at home since I went through the first cycle of intense chemoteraphy during the holidays, their moral support was very important.
In a previous post, I talked about the hard decision we had to make regarding treatment. Indeed I believe in research and after doing my homework, looking for information on “Grey Zone Lymphoma”, reading blogs from patients and survivors, and having conversations with friends and family; We decided to go with the treatment proposed by the Lymphoma Team at NIH.
The National Institutes of Health (NIH) is the US medical research agency. It is a federal government entity whose work and research benefit not only the people in the US but the world.
The new treatment proposed by the group of experienced doctors and nurses at NIH consists on two cycles of intense chemoteraphy followed by 6 weeks of radiation. Each chemo cycle lasts 5 days. The first day I had to stay in the hospital for 24 hours. The next 4 days are not so bad since I carry a fanny pack (“cangurera” in Spanish) with a pump that administers the chemo. I can go home and do my regular activities. Each day I go back to the hospital to change the chemo bag and then I go back home.
The new chemoteraphy regime includes the following medicines: Campath, EPOCH and Rituximab (DA-EPOCH-R). These medicines are extremely powerful and believe me, they work. When I asked about loosing my hair, I remember the doctor telling me that I will will lose my hair on the the third week after the first cycle. Since I didn’t lose all my hair on the first round, I thought the doctor was underestimating my “Mexican genes” (like Dave says)…. well my hair is gone and I have a new look.
Now I can change my look each day and I am having fun with it. It is definitely a process of finding what makes me feel comfortable and great. I can wear a wig, a scarf, a hat, or whatever I want. I can also try different colors, lenghts and styles. Certainly, on the next post, I will share some of the funny stories.
Tomorrow I start cycle 2 of my treatment and I will spend the night at the hospital so the chemo does it magic and gets rid of the cuckoo cells.
This is certainly a new start and I am looking forward to winning this battle and regaining my g
ood health.
Your prayers, positive thoughts, calls, cards, and emails mean a lot to me. But most importantly, I am grateful for feeling so loved and supported by our families and dear friends. Thank you!
I will keep you posted.
Enjoy the rest of the week!
I took a break from writing on the blog because I wanted to take some time off after the treatment and the intense but fun projects I have been involved at work. But I am back to share with you our favorite recipes and the adventures and feelings of the new battle I have to fight. This is round 2.
For Thanksgiving we traveled to Bloomington, IL. We spent a day in Chicago – what a great city, – it was almost 18 years ago since last time I visited the windy city. We had such a fabulous.
I had a CT scan which showed an increase in the size of a lymph node on my neck. The fear of having the Lymphoma back was quite evident.
And yes, unfortunately the Lymphoma is back and not only back but it seems that I have a combination of two types of Lymphoma (Hodgkin’s and Non-Hodgkins). This combination is known as the “Grey Zone Lymphoma” a rare type of the disease discovered in 1998 that affects a very small percentage of patients. Definitely, I am going to buy several lottery tickets, perhaps I will have the same luck.
I had a partial biopsy of the lymph node, but yesterday I had a full surgery to remove three big nodes on my neck. I am doing well just tired and sore but feeling better.
On mid-December I will start chemotherapy again, it seems that the treatment is intense and concludes with a “stem or bone marrow” transplant, but let’s see….. I am quite disappointed and angry this time (but I will get over it). My hair was growing back and I was starting to recover my strength.
I have no choice, I am in round 2 of a battle that I know I am going to win. This time I am thinking about cutting my hair to be ready for this crazy battle. I like Charlize Theron’s haircut for the role she performed in the soon-to-be-released movie Mad Max.
Thank you to my family and friends that have been praying and thinking about Dave and I.
I am strong believer that love, a positive attitude, and a warrior spirit can get you through the most adverse and difficult circumstances.
I am ready….
Dear friends and family,
Many weeks have passed since I published an update on my blog. This summer has been quite busy: I completed 12 rounds of chemoteraphy and I had a CT scan that revealed that the cancer is in remission!! (This mean that the cancer cells are no longer growing = great thing). One of the side effect from the chemo is that my lungs need to recover and I am under treatment, but this is nothing compared with what I went through the last six months.
Immediately after receiving this great news, I traveled to Santa Fe, New Mexico to spend almost 4 weeks implementing the program I created: ArtFest12 – a summer program sponsored by Laureate for students in the art, design and architecture fields. The first edition of the program was very successful and gathered 230 students from around the world. You can imagine it was a lot of work; but fulfilling and creative work.
Also, Dave and I celebrated our first anniversary. Certainly this was a challenging year for us, but we are blessed, we love each other and we have the support of great friends and our loving families.
To celebrate that my cancer is in remission and to run for the cure, I have signed up with Team in Training for a post-cancer half marathon that will take place in San Antonio, TX on January 27, 2013. The name of the race is Hero-Thon. My commitment means also to fundraise to support the mission of the Lymphoma and Leukemia Society (LLS). To donate go to:Team in Training.
I am really blessed and thank you for your encouragement during this crazy journey. Cancer took some of my energy and changed my life forever; yet cancer couldn’t take away my desire to live and the love of people around me. Love beats cancer!!!
Six months ago I married my best friend Dave in a beautiful ceremony in Bloomington, Illinois surrounded by family and friends. So to celebrate our love and happiness, I put together the video below:
Tomorrow, people around the world will celebrate Valentine’s Day (Dia de San Valentin. In Mexico it is also called “Dia del Amor y la Amistad” which translation is “Day of Love and Friendship”
Even if you don’t celebrate Valentine’s Day, take February 14 as a reminder of the importance of being kind to yourself and others.
Happy Valentine’s Day!
-Bea Grateful- 