Esophagogastroduodenoscopy – now that is a mouth full!

Pardon the pun in the title. I’m happy to report that the endoscopy that I had yesterday showed that the villi in my small intestine now look normal. This means that the gluten free diet I have been on for the last couple of years has allowed my body to heal from the damage caused by the celiac disease antibodies.… Read More »

The #PAPMET clinical trial

Originally mom was told there were no clinical trials that she qualified for. Kidney cancer is rare, and papillary renal cell carcinoma (pRCC) is a rare form of kidney cancer. Fortunately, she was informed that there was a clinical trial that she qualified for (or will qualify for after treating her brain mets). pRCC is… Read More »

We are a rare family

As a family, we seem to be dealing with rare health issues. When I was diagnosed with bilateral breast cancer, I learned that it was rare (less than 2%) to have cancer in both breasts at the same time. Then there is my brother. On Friday evening last week we had a phone call that… Read More »

Treatment options for mom

We had an interesting call yesterday – from a nurse at the oncologists office. She said that the doctor wanted to prescribe Yervoy (Ipilimumab) & Opdivo (Nivolumab). In order to do this, mom would need to apply to the Access to Hope program, which would allow her access to these medications possibly for free. This is the… Read More »

Echos of experiences past

This week, one of our challenges has been getting a medication for low phosphate. Mom’s blood tests from Monday came back with low phosphate levels. Then we went through the following steps: The doctor sent in a prescription to the pharmacy (which is done by fax). The pharmacist said that the prescription was no longer… Read More »

The psychology of names

It is interesting how the way we call things has a direct effect on our emotions. Yesterday it was the term ‘hospital bed’. Mom is having trouble getting into and out of bed. Mostly it is painful for her. The occupational therapist recommended a hospital bed because it would provide side rails that would make… Read More »