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, cleaning, and cooking, life happens. I have no time for myself. I am physically and mentally exhausted at this point in my life.
I’m 32 years old and I feel like I am 100 because of all the chronic debilitating illnesses I have on top of living with cancer everyday. Somehow, I keep going. I don’t know how I do it. 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. So 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 Nick is at work. I have to schedule appointments weekly which is annoying. Another thing added to my crazy list of to do’s.
On May 9th, I saw my surgeon for a follow up. He suggested for me to speak with my radiation oncologist to discuss chemotherapy. Because the cancer center I go to now is not a number one cancer center, I have to pay for the chemotherapy out of pocket full price, which Nick and I do not have at all. So I decided to get a second opinion because chemotherapy in Orlando is $20,000 a month. I was told I would have to be on chemo for 4-6 months possibly. It all depends on my PET SCAN. My surgeon gave me a referral for the PET SCAN to get done which I haven’t had time to do just yet. If you know my day to day life you would totally understand why I am so damn exhausted.
On May 20th, I ended up in the hospital. As many of you know because, I had Nick update everyone. 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, Nick begged me to go to our local ER. 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. I forgot the name of it. 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. I was given Fentanyl patches to try out but I am still having major migraines at this time. No vomiting, just a lot of nausea but I take Zofran as needed.
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. Check ups are usually every 4 weeks at this time because my cancer is at an aggressive stage. I left the house at 9am with transportation and I didn’t get home until after 3pm. I came home. I cooked with one eye open and I crashed. My TSH is finally getting lower after it being in the hundreds for many years. So we finally know the Armour thyroid medication is working. 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. My nurse confuses me. She doesn’t want me to have a PET SCAN done at this time, as she doesn’t think it is necessary. Meanwhile, I have trouble breathing with my lung mets and I still have a rising tumor marker (TG). 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 am going to stick with the nurse for my refills and sonograms at this point. Everything else, chemo or god forbid I needed another surgery, I will go to Mayo clinic.
On May 24th, Nick was able to switch his days to take me on a 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. At this time right now there is no Chemotherapy that’s happening in the next few weeks. 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 are only two different kinds of Chemo 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. I won’t have to go to Mayo everyday, thank god! It would have not been possible anyway because I can’t get there without Nick. My doctor told the both of us a Nurse can come to the home everyday. I am so relieved. As far as the cost, the cost for one of the medications is $20,000.00 with my medical insurance. Yes, you read this correctly!
As you know Nick and I only have one income. He works a 40 hours work week(not all the time, as his boss sometimes gives him less hours. He doesn’t make what he should be making so having chemotherapy will be impossible. I don’t want the chemotherapy because the cost is outrageous. It’s scary too. We live pay check to pay check so I don’t know how this is even going to be possible. So, it sucks your stuck between Life and Death. My secondary insurance doesn’t do squat. That is why so many of my friends have passed away because they couldn’t afford treatment. The state will NOT fund or help you. Just another way that life is unfair. Nick and my family obviously will do whatever it takes to help me but if you think about it, if I have to be on this for a year, how would this be possible? There’s just no way. I was hoping I do not need the chemotherapy treatment at all.
My Doctor called me yesterday. He decided to tell me my lungs mets are considered Lung Cancer not Thyroid Cancer and how I am going to need the Chemotherapy soon. I am freaking out because I am not doing so well plus I do not want the toxic chemicals in my body and then of course the $$$ There is a lot to think about. I don’t want Chemo at all. It’s aggressive and will make me very sick. I will not be able to go back to NY for quite sometime to visit. Finally after going through everything with the Doctor he ordered my tumor marker to be tested by mass spectrometry, which I am not familiar with. He is sending out my blood work to a different state so my TG can be tested because I have positive antibodies. Based on this test this will help him monitor me better.
So as you can see I’ve been through hell and back. This life is harder and harder. At this point in my life I am petrified for Nick, along with my nieces and nephews and for my family. I am not afraid to die anymore because I am exhausted physically and mentally. I never smoked or drank in my life. Nor, did I ever do those crazy drugs I see on TV. I drank maybe once a year. I was always heavy because of all my auto immune diseases. However, I am looking forward to loosing a million pounds considering I don’t eat much as it is. I should be 100 pounds. Seriously! The chemo makes you very sick which can lead to weight loss.
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 do wish they had a Hope Lodge but because Mayo is huge they do not have this free option for cancer patients. That’s ok! The least of my problems is the hotel and getting there. I will get to Mayo on Nick’s schedule. We will know ahead of time like the Doctor suggested. He will schedule everything all in a day or two so I can get the best care possible.
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.
Please continue to share and re-tweet, as every little bit will help me.
xoxo – Danielle