It’s 3:30 a.m. here in Chandler, Arizona where I am still at Chandler Regional hospital. I am laying awake contemplating life and getting myself ready for whatever lies ahead. I am being discharged to go home tomorrow, if all goes as planned. My husband was here today getting trained on how to do trach care and administer meds via my feeding tube, since I cannot swallow any food or liquid. Tomorrow he will be back to get more training and then we leave for the 2 hour drive home. It has been 18 days since this all began.
I was going to go home a week ago, but then I developed a blood clot in my right arm, it swelled to twice it’s normal size, and I had to have a stent placed in the vein. Fred, the tumor, was not content with just blocking my airway, it also decided to compress a major blood vessel. So I did another 3 days in ICU recovering from the stent procedure. Finally I have been deemed ready to go home, provided I have enough help and support to get the care I need. My husband and our circle of close friends have rallied to the occasion and are going to make it happen. I never imagined being so dependent on other people. But I am grateful for them all.
What we know so far about Fred is that it is cancer, but they still have not identified exactly what type or the status. We’re waiting for a full pathology report from Cleveland clinic. So we do not yet know the treatment plan or prognosis. For now my focus is on transition to living at home and adjusting to this new state of being where I cannot speak, eat or drink.
What does quality of life mean. It means being with the person who loves me with all his heart, being with my dogs, being with my loving friends and accepting their love and help. I can still read and write and listen to music and take a walk and see the sunset. I’m excited to be getting out of the hospital. I have reconnected with my sister who I have not seen in many years, and she has been amazing. She’s the one who named the tumor Fred. I still have my sense of humor. I’ve met some incredible nurses and others who go above and beyond taking care of people.
I have even taken an interest again in the outside world, and have been watching the new show with Krystal and Saagar, Breaking Points, which they started after leaving The Hill. I enjoyed Rising and I like the new show. But I do watch current events from a place of detached observation, not feeling invested in much beyond my personal journey and getting the most out of life as I can now.
I thank you for this space to write my thoughts out and share them. Onward to the next steps! I should try to sleep now.