March 23: Mayo Clinic- take 2

After spending almost three weeks here last month, I can say with confidence that Mayo is taking this covid 19 very seriously- there are hardly any patients on site. Waiting rooms are empty, there is a sign every  two chairs so that no one sits there (social distancing). I witnessed many employees get in line to take there temperatures while others were constantly wiping down everything in site.  Since the clinic has been shut down to all non essential patients most were wearing masks esp around the oncology halls.😷

Today I had a PET scan to make sure that since the removal of the tumor there has not been any mets and also to look for any other activity since the original PET looked specifically for neuroendocrine cancer. Immediately after was labs, chest X-ray, Surgery follow up, Radiation oncology (consult that got moved up to today from tomorrow) and Medical oncology.  My follow up with Cassivi went well- he used a great football analogy, he was the offense and now its time for the defense to take over.  He is very confident in the oncology team I have and works very closely with Dr Oliver, the radiation oncologist. Anyhow/ Post Surgically I am healing well! Today my sodium was hi! Lol 147!! Most likely because I couldn't drink much fluid yesterday. While we were with him the PET scan report came in and is there is NO evidence of  residual, recurrent or metastatic disease! Good News!!!!🥳

Next we saw  medical oncology and radiation oncology where shit got reall!!! Despite having a successful surgery with clean borders. Chemo and radiation will still be needed to make sure that we kill any micro cancer cells (I chose to call them by another name but my mom will be reading this so I will keep it PG) that may be present. Chemo sounds pretty straight forward two meds given IV over three days administered every three weeks for four rounds (ie 12 weeks of poison). The drugs are pretty freaking harsh and come with the classic “I've got cancer hair loss”  not to mention nausea, vomiting, ringing in the ears and  possible kidney dysfunction. Good times!  Because there is no standards treatment outline available for stage 1 neuroendcorine thymic (new word alert) NON MEN-2(multiple endocrine neoplasm) small cell carcinoma the docs will use a combo similar to what they use  for small cell lung cancer. The plan is to start ASAP. Generally chemo is most effevtive if initiated within 5-6 weeks post op. Good news is that chemo is chemo and can been done by anyone once the drugs are decided on, so I can go home for this.

Radiation oncology is pretty damn technical. They compared there role in this  to that of a surgeons. It has to be an exact science of precision  They need to administer the exact amount of radiation at the exact depth to the exact location otherwise you run the risk of damaging surrounding organs. In my case thats my heart! Kind of an important one. The best choice for me would be proton radiation because they can measure the depth and width of radiation delivered as opposed to regular radiation which pin points an area and zaps everything through it and around it. As a 41 year old healthy mom (as the docs say) regular radiation puts me at great risk for heart damage and breast cancer. Yeah radiation to kill Cancer can cause breast cancer down the line. WTH 🤦🏻‍♀️ The only problem with this radiation is there isnt one close to home that can be administered directly to where my thymus was. Again, using the surgery comparison, if we use a radiation oncology location that does not treat Thymic carcinomas its like having a GYN surgeon remove your tonsils. Dr Oliver has peers at John Hopkins proton center in DC as well as Emory in Atlanta and know faculty at VCU but VCU doesnt have proton therapy. He highly suggested that not only have proton radiation but to have it at a medical institution hospital. He could not recommend Hampton proton therapy 😟 So we have some figuring out to do. Radiation is most beneficial when given during the first or second round of chemo.  It is done 5 days a week for four and a half weeks. At this point if insurance will cover proton radiation then I will stay here for 4.5 weeks and have it done in conjunction with first round of chemo.

Its a bizarre time to think about chemo, radiation, covid 19 and flying, not to me tion which hospitals and locations would be safest to be at. We have a lot to think about- but our top priority is  my health..... if staying here for radiation is the best option with the best outcome then thats what I will do.  I will be posting sign ups for who wants to come out to MN- I feel like you may all jump on it just to get away from your kids being home! JK!!  Thats all for now.