Thursday, September 1, 2011

in the middle

this morning i had a check-in appointment with my regular doctor. it is so nice to see her, i think of her as my gaurdian doctor angel since she did the original biopsy. had she not been paying attention, who knows how long it would have been until i had the biopsy. who knows what a delay in the diagnosis could have meant. who knows where i would be without her. i am glad i don't have to know the answer to that question.

after that appointment, i went back to seattle cancer care alliance (scaa) for my rib x-ray. i got a call late this afternoon, the x-ray came back showing no breaks or fractures. the pain continues as does the lack of a clear reason for it. i will check in with my oncologist and see if we are going to take any other steps, or wait and see if i feel better next week. aleve, you continue to be my constant companion. i don't know what i would do without you my friend.

i think that the stress of the last couple of weeks has caught up to me. i am so tired i feel like it is actual work to keep my eye lids open. at the same time, there are so many thoughts swirling in my head that are looking for a way out.

when i was at scaa yesterday, i had about 45 minutes between my last scan and my appointment with my oncologist. i had a book to read, but i couldn't focus. i spent the time just looking around and thinking that in the beginning of this all, i would never have thought that i would miss going there every four weeks. but, miss it i will.

scaa has been an unexpected place of comfort for me. everyone that is there has a connection to cancer - they are a patient, a caregiver, a doctor, a nurse, staff, etc. there is something to be said for being at a place where everyone in the building has something in common with you.

i feel less alone in the battle when i walk in those doors. strangers smile at me...especially when i have my patient bracelet on when i am doing tests. that is a sure sign you are there because you are a patient. i share eye contact with others with a look that says "me too". every single person that i have met there has always been so nice and welcoming. there are patients that are in different stages of different cancers. i am typically the youngest person that i see when i go there. sometimes i find that to be overwhelming because it means my fight will be longer than most. sometimes i find that to be incentive for me to keep going because i have a lot of life to live. sometimes i find it to be so sad i can barely take it. no one should have to be there as a patient, regardless of their age.

yesterday after my ct scan they made me wait for 30 minutes to make sure that i was ok before setting me free. i felt so nauseas from the test that i was just sitting in the chair and not moving. i was freezing cold so i was wrapped up in a warming blanket. an older gentleman was being escorted to a seat in the same area. i heard him say "i am going to take that seat right next to that pretty lady" and realized he was talking about me. i laughed and said i would love the company. that was my first laugh of the day and it was 3:30pm. he told me i was pretty. there have been many days in the last year i haven't felt even close to pretty. i drank my water and string cheese. he drank his oj and crackers. i had a buddy. i got to leave before he did, but i saw him again later in the lobby as we were both waiting for our next appointments. he looked at me across the room, i smiled, and he gave me a nod that said "you can do this, and so can i".

this week has been tough emotionally for obvious reasons. but, it has also been tough because i feel very out of sorts. i have had to physically remind myself that i don't have to go to the kitchen at 8pm to get my shot materials ready for barrett. my body wants to go through that routine. i feel like i have to sit on my hands. i still have the side effects of nausea and muscle aches. they tell me that i should start feeling better in about two weeks when the drug starts to make its way out of my system.

since my routines of the last 52 weeks have been primarily focused around my treatments, i am having a hard time not keeping that routine. there is comfort in routines, for better or worse. i won't see my oncologist every four weeks. i will have to feel for lumps/bumps on my own with no back-up from him on a regular basis. i feel this overwhelming sense of responsibility to constantly be on surveillance now for myself. i don't remember what it feels like to feel ok. i can't resume life as i knew it. i don't know what this new life looks like exactly. i am scared about the unknown of the future, but i do know that i don't want to live in constant fear of recurrence. i need to find middle ground. i am not sure how to do that. very curious as to where i will end up. a new journey begins.

one step at a time. deep breath. here i go.

1 comment:

  1. life is slippery alli - you have many hands to hold. love, love you!