We have some updates. It’s been an exhausting couple of weeks with what seems like endless appointments and rescheduled appointments and more than a little stress. Tom’s latest round of chemo got delayed due to a pharmacy error and after a lot of calls from us and his providers he was able to complete this last round last Wednesday. This round hit him the hardest and he felt terrible and could barely stay awake each day by the end. In the middle of that we had his PET MRI last Monday. On Tuesday we ran into delays getting his seizure meds refilled to the point where he was about to run out (do not ever use Express Scripts! ☠️). We were still dealing with that when I went to my oncologist and Tom felt too poorly to come along. Unfortunately she was running behind and Tom’s scan results came in and once again the report sounded terrible that the continued enlargement of the mass in his frontal lobe. I had hoped to postpone the start of my antihormone drug a few weeks until after our anniversary and we decided that with the uncertainty with Tom I could hold off up to three months if needed. I was crying and upset anyway and we called it a day so I could get home to him. Thankfully the one thing that did go okay was that Tom’s providers were able to get the anti seizure meds refilled. On Thursday we were able to get some reassurance from his oncologist’s assistance that his oncologist believes the enlargement is still effects from his treatment and not new tumor and the PET MRI supports that. She said if the swelling causes symptoms like headaches or seizures then we could put him back on the steroid or consider infusions and his oncologist would go over more with us this week. The latest images of Tom’s brain make me cry. They are upsetting. It’s hard to reconcile those images with the healthy, smart man I share a life with. We did not understand how he was not having symptoms, until Sunday.

Sunday night Tom had a small seizure just like the last one I witnessed. We gave him medication and an hour and a half later he had another. More meds and he got a good night’s sleep and has been okay.

Today we met with his oncologist who seems positive about his recent scan and more confident now that we have two PET MRIs that there is not new tumor growth. We put him back on the steroid until we can get infusions of a drug called Avastin approved and scheduled. The Avastin will ideally knock down the swelling and hopefully get him back to exercising the way he wants and needs to do. There are some side effects and it will make his next scan slightly more difficult to detect tumor regrowth but we also can’t allow the swelling to continue in his brain so we are on board with this plan. The infusions last 30 min and he would have them every two weeks for 3-5 doses once he gets started. We will also do a slightly reduced dose of chemo for his next cycle.

Things are hard mentally here. Thjngs are trending in the right direction but we’re also exhausted and depleted from the past year. Tom has lost his independence and his cycling which makes it hard to keep spirits up. We are thankful for our friends like Don who took him to breakfast and a haircut the other day and Brian and Megan who took him to yoga and gave him a fun afternoon with our nephew this weekend.

We’re both still working. Appointment days mean we can both end up working late and I often catch up on weekends.

I am dancing as much as I can because the alternative is crying and/or screaming of which I still do plenty. So grateful again to our nephew Tyler who hung out with Tom so I could still go to my event and Zach, Roxy, Torgy, Darrell and Clay who have hung out with him so I could teach and all my amazing instructor friends who have subbed for me and of course Tom’s sisters who came to stay so I could have my dance adventure. Our village is definitely keeping the wheels on the bus as they keep falling off.

We have been also managing the estate, angels have appeared to help there too and maybe someday that albatross will be off our back. There are court deadlines to be met but hopefully some of the bigger things will be accomplished soon.

We are also deeply grateful to our Providence care teams who are so responsive and keep advocating for us and trying to keep our spirits up on this rollercoaster.

As one of our providers put it, we are in survival mode. Eat, sleep, work, shower and keep the bills paid. We try to find moments of joy where we can and a couple Sundays ago we fled our to do list and messy house and took our cranky, aging bulldog to the beach. We keep getting tastes of normalcy and they slip away again so we enjoy them when they are here. We adapted and replanned our anniversary when critical appts got rescheduled and we are still hoping for a few days to relax and replenish nearby soon. The important thing is we are both still here and keep choosing each other in all this madness.

Thanks to everyone for your love and support.