It has been awhile…
It has been quite sometime since I last blogged. Here’s why! Every week is a crazy busy week for me. Between going to my Lymphedema specialist, the cancer center, blood work, life happens. I have no time for myself. I am physically and mentally exhausted at this point in my life.
I am supposed to get physical therapy two times a week but I choose not to because therapy wears me out. After therapy for about an hour I feel good because she massages my neck. I do not like when doctors touch my neck area where my scar is, as it gives me anxiety every single time. I am trying so hard to work through this 1 hour PT appointment. It helps that my physical therapist is a woman because a woman’s hand is less stronger than a man’s hand. Just getting to the cancer center is exhausting. I go by medical transportation to most of my doctors while someone is at work.
On May 9th, I saw my surgeon for a follow up. He suggested for me to speak with my radiation oncologist to discuss chemotherapy.
On May 20th, I ended up in the hospital. For about a week straight I had a migraine and could not keep anything down, especially gatorade or water. I thought I was going to die. I slept and kept hydrated and ate some but for some odd reason, nothing was working in my favor. After about 5 days of non stop vomiting and migraines, The ER ended up admitting me because they were giving me Morphine every 4 hours, which was working at some point. With the Morphine, I couldn't stop vomiting either. Nurses ended up pushing Zofran twenty minutes prior, which I told them from the beginning, but no one listens to me. As soon as the medication was wearing off it was time for another dose and I desperately needed it. I was in the dark. pitch black, and blinds closed in a private room. No lights were allowed to be turned out. After day 2 in the hospital, finally stopped vomiting. The ER doctor gave me a different kind of nausea medication which I never heard of before. It helped but they still wanted to keep me for another day just to monitor my heart. I finally got home on May 22nd just in time for my Moffitt appointment which I didn't even want to go to at this point but I had to push myself because I needed medication refills.
On May 23rd, I went by myself for a checkup with Moffitt cancer center to see my Endocrinologist/Oncologist. I had to wait over 3 hours just to be seen and transportation was giving me anxiety because they kept asking when I was done. I had to get refills for my Thyroid medications I take on a daily basis and have labs drawn. I left the house at 9am with transportation and I didn't get home until after 3pm.
My calcium is stable at this time due to Natpara. I have to continue to take this. I am still severely anemic and vitamin D deficient (which I have been for years) so I will go back onto the Vitamin D 50,000 IU everyday. I am still waiting for the medication. September will be my first neck ultrasound since my surgery on top of blood work of course.
Because of my rising TG even after surgery, it is best to have a PET SCAN, which I know because I been through this already. I have just too much conflicting opinions. I decided to look elsewhere for a new Cancer Center.
On May 24th, road trip to Mayo Clinic. It took us almost three hours to get there and back so a total of about 6 hours. We left the house around 6am. I got up for 5am. Talk about exhausting! Heck, we’re still exhausted! The Thyroid Oncologist knew his stuff. He asked me a lot of questions which took me sometime to answer. I basically had to start from scratch and tell him everything from 2012 - current. It’s a lot because I couldn’t keep up. I have homework to do which I am almost complete with for him. I am waiting for CDs from NY because the oncologist needs to view my thyroid scans and pet scans. He needs the images and more paper work. I was finally able to get most of the paperwork but going back to 2013 was hard to find. It took me a good two hours yesterday to find all the paperwork. Once my doctor gets the CDs he will then talk to the radiologist to see what the next step is going to be. He will call me within 2 weeks to discuss the next steps. The doctor will to go over my scans with the radiologist. There is only two types of Chemotherapy for my cancer. The first one is called Sorafenib and(the other name is Nexavar) and Lenvatinib. Both of these are taken daily by mouth or iv daily at home.
Thank you for all the love and support. Your support and donations mean the world to me. Every penny goes towards either a copay, an ER bill, and now all the donations will be going towards hotel stays and chemotherapy most likely. There is a hotel right across from Mayo clinic that gives cancer patients a discount if I have to stay a night or a week or two. I have a list of many other hotels too. I am happy they have this available.
I thank you all again from the bottom of my heart for reading, sharing my crazy journey with your friends and family. Awareness is incredibly important. I am grateful to be alive each and everyday. Everyday is a gift. I am still breathing and doing. That’s all that matters.
🤟🏻Danielle