August was strange. Good bye, Dr. Drake and Tiye. Hello, MRI machine.

My last post was over a month an a half ago. I wish I could point to one reason for the delay, but there are just so many. I wish it was because I was too busy enjoying summer, but instead there was a writer's block related to so much happening, and having so little understanding about it. Being uncertain takes up a lot of space in my brain. And, I can't ignore that there was still a pulsing grief for Cinder that was heavy in our air.

After we lost Cinder, we took our one and only overnight away from Tarrytown since the visit to Virginia, to help us process the loss. We went to a lake upstate and stayed for three nights in our friends' place by ourselves. Chris and I enjoyed some canoeing and relaxing in the sunny rooms. I was working on learning how to draw as a fun goal for the summer (it is on pause for now), and Chris did a bit of reading and napping. It was nice to have a brief getaway. 

August was a strange month. We did not get half-way through it before we were truly back to work. Generally, teachers have more time to enjoy the summer, but this year we needed to go back extra early to get ready for learning during COVID-19. Unlike most schools, we are opening fully in-person, five days a week. Many, many, many precautions have been put into place to make that happen. We are all screened for covid weekly, we have many plastic screens, hand sanitizer, masks, etc. We are having the children walk and sit 6' apart. 

Medically, it has been hard to write about things because there is an awful lot going on. I am frustrated because things that I mentioned ages ago are only now being attended to. This happened because I went to a pain specialist who is trained more on the neurology side, than the pharmaceutical side. Dr. Marshall did a crazy thing that has not happened in many months. He did an exam. He tested my reflexes. It was not a huge or invasive exam, but he noted that there was significant atrophy on my left leg, and that my reflexes were not top notch. He said he understood from the MRI imaging why the left side was not great; but he did not know why things were not great on the right. 

I passed this information on to my team who decided that I ought to get an MRI. Of course, insurance denied it-- twice. Of course my appointments were cancelled-- twice. Of course, while I am trying to set everything up for students to show up, I get a call to drop what I am doing and go to NYC for an MRI RIGHT NOW. AND, of course when I get there they tell me insurance has not approved it, and I will have to wait. (This turned out to be not true, but people don't really do their jobs super well all the time...)

Anyhow, the good news is that I did get the MRI, and I don't have cancer spreading anywhere. The bad news is that I believe I got the MRI because I was meeting Dr. Drake the next day for an infusion and, he wanted the results ASAP for that meeting because, as it turned out, it would be my last time meeting with him. He decided to no longer see patients and go full time to work for a pharmaceutical company. He was dropping me as a patient. I lost my medical team. Including Tiye. I. Am. Devastated. 

They have assigned me to someone else, Dr. Stein. I am sure he and his nurse are just fine. I am still devastated and am struggling to process this massive loss. We chose Columbia BECAUSE of feeling cared-for by Tiye. We chose Dr. Drake. We didn't choose the institution--MSK is way nicer as a facility-- we wanted the care we felt from the people. I am truly, truly devastated. 

Meanwhile, my symptoms have been concerning me, irritating me, and generally freaking me out. My thighs are now numb to light touch, and uncomfortable/painful around the sides and at the knees. I have not been able to lift my leg high enough to get dressed or to cross my leg for a while. I mentioned this to Dr. Drake at my appointment early in August, but he did not seem to see the issue-- he responded that the "cancer" was the reason I couldn't lift my leg. He didn't see the need for physical therapy because the nerve isn't working. I said I was worried about atrophy and he laughed and said that we wouldn't let that happen. 

This response was flipped entirely after the appointment with Dr. Marshall and the MRI. According to the MRI, my left psoas muscle has severely atrophied. I guess that is why I can't lift my leg, too. Dr. Drake thinks PT is a good idea now. The good news there is that Dr. Lanie LeTard suggested some exercises that I was already doing. I was really good at doing them for about two weeks AND I enjoyed them even more because I did them with a buddy many of the days. (Now I am overwhelmed with school, and need to sort out a way to do the exercises even on work days.)

The newest information is that these sensations in my legs have been changing/progressing and I am scared of what the next change will be. I sent an email to my old team asking who I get an answer from about why this is happening, and if it will ever get better. The response is that I need several more MRIs (or my brain and thoracic spine), and a new addition to the team (a neuro-oncologist) to answer that. These appointments are all TBD. 

I promise I will post again with updates on what life is like at school during covid (spoiler: BANANAS), but for now, I just wanted to be sure you had some kind of news. A lot has been going on. It is just a lot to process, and sometimes I don't know how to pull it apart for the blog. 

Anyhow, next summer, my toes will reach an ocean. I will swim. I will go on a vacation. Covid got in our way A LOT and made it so we were very careful--but also very isolated. I am grateful for our Hackley fam who were around and hung out with us. We needed you. Thank you. <3