Mofitt visit

Today, I went to Moffitt and saw a different Doctor. Last week Moffitt called me and apologized. I was shocked. I wasn’t expecting a nurse to call me on her cell phone. They are investigating the calls because apparently the Doctor didn’t get any of the calls since September or October, which is strange. That is why I went to the Orlando cancer center for my third surgery. I felt like i was being brushed off and he didn’t give a crap.  Keep in mind all the calls are monitored via secretary. Whoever calls, it is automatically typed into the system. I also see it on my end on the patient portal. So, instead of seeing that Doctor who I am not comfortable with, I had to go elsewhere. The Doctor didn’t want me to change Doctors so instead of seeing a Doctor I see a nurse practitioner. Doctor N can write me scripts and she listened to me which is nice. Another Doctor I saw yesterday diagnosed me with PTSD ( Post Traumatic Stress Disorder) which is very common more than you think for those that are sick with cancer and multiple illness like myself. I also am dealing with more panic attacks which I ended up having in the office. Out of nowhere! Just like the Doctor and the nurse said I have been sick for 11 years. They’re surprised this didn’t happen sooner. I guess my body reached a breaking point. They both decided to put me on medication. The medication takes a good 2 months to kick in. In the meantime, I am still waiting on my pain meds. I just take it day by day at this point.

Right now my labs are a mess. I need a higher dose of thyroid hormone but she does not want to switch me just yet because of the new anxiety meds. She wants me to focus on staying calm and stress free ( HA ). Then when I go back in a month hopefully I will be calmer and I can focus on treatment.

Unfortunately, since this is my 3rd recurrence and that I am RAI resistant, which means my body cannot handle the RAI, It wouldn’t make sense to give me RAI for the third time anyway because this is another recurrence. The next step is External Beam Radiation or a TKI therapy drug. She has to discuss this over with another Doctor and get back to me. I definitely do need treatment because my tumor marker is still high. She is more concerned about the anxiety right now. I told my Doctor I refuse to have EBR. I am claustrophobic and I cannot be in a machine with a mask over my head for a long period of time. I will not be able to handle this at all.

My scar looks pretty good. I am trying to focus on the positive that I am still here despite all the many challenges I have daily.  I have been falling a lot. Yesterday, I hit my darn head because I was so dizzy. My legs gave out and this is something I can’t control.  I am patiently waiting for approval for the pain medication. It takes forever and I hate it. Especially to those of us that are in need.

I am happy the nurse listened to me yesterday. She went over my pathology report and my labs. My TGAB levels will be back on Monday. I hope they aren’t higher. I will be on close watch. She will call me every two weeks because of the anxiety meds to check in. I am glad I went back since the Endocrinologist my surgeon referred me too can’t handle my case. I need a cancer center that handles complex cases like mine.

I am sleeping a little bit better but i am still uncomfortable. I still can’t touch my neck, as it gives me anxiety. I do wash it of course and put Vitamin E oil on it. Thats all I can do.

The anxiety attack happened when the Doctor did a neck check. The Lymphedema is really bad. She said so she is happy Orlando Cancer Center got me in to see a Lymphedema specialist April 3rd. April cant come soon enough. I am in desperate need of relief. The swelling gives me anxiety. I am having multiple attacks daily. Something I worry about too.

Between everything going on right now I’m the definition of a hot mess. I could use a vacation on a tropical island where there’s no one, not one doctor, or a pill in site. Just a beach on a nice hammock.  The fresh air helps me. Music helps when I don’t have a migraine.

Thank you all for the donations, love, support and messages.

I have to get to bed my head is pounding.