Exceed available Energy, Pain and Scan Anxiety weighing heavily

I definitely exceeded my available energy today, and now I am paying for it, hopefully the pain will stop when I attempt to sleep. I was cleaning up my Hobby/Play room so I can start creating and also opening my Online Toy/Comic etc shop, cause we be broke. I also moved my living space around so I can build a playground with a jungle gym so she will stay off the Barbie Malibu Mansion. She loves laying on the top trying to catch her tail thru the openings on the roof. She also uses as an obstacle course she will go to the top of the stairs and sprints very loudly down the stairs then slides as she makes the turn on the linoleum floor then leaps about 5 ft to the table holding the house races up and either slides down to the book case or stays on the pea for a while trying to get to the light fixture, swat a fly, or play on the peak of the house like it's a jungle gym.

I also created a hole for her to access the space underneath the staircase as her private space which is away from Loki (our male panther looking black cat who followed me home a couple months ago. He stays upstairs with Carrie, he is an indoor/outdoor cat, he stays out in the day and comes in around 9 pm for the night time. Riley doesn't care for him though he is beyond friendly and keeps trying to make friends and play. All Riley wants to do is the make sure he knows she is the Queen and Everything belongs to her. She knows when it is time for him to come in and stands on the staircase or near the staircase where Loki is sure to see him and she hisses at him. Though today she was too enthralled with her latest hiding space underneath the staircase that she forgot about Loki. Now she has 3 places to hide her high perch above the closet, her bunker underneath the staircase and her cushion shelf in the bathroom that has a view of the backyard and the tree the birds love to hang out on.

I also had to rearrange the furniture so I can put the ottoman bench back in front of the sofa so I can keep my feet propped up. I know from my bone scan that I have Osteoarthritis or the Degenerative Osteoarthritis I can't remember which one they said, it was in both feet, my left knee, my lower spine and my neck.  My next appointment is fast approaching just 7 days, where I will get blood taken, my port flushed and the dreaded scan. Which naturally means scan anxiety is in full force. The dreaded scan that will determine whether of not my parole from chemo is up or will I continue to dance with NED (no evidence of disease, basically the cancer is too small to pick up with scans). I am not really looking forward to it especially with new pains that have started to flare up. The pains are either the caner or Sjogren' either way the are a royal pain in the ass. 

As I am typing this I am trying to ignore the pain in my left knee and feet my medicine dulls the pain to make it bearable but doesn't get rid of it. Each day that passes means more medical bills as I am an "outliner" a "2%er" basically defying the odds by living past the "33 months" which is projected life expectancy of Stage IV patient. Here is a link to an article that gives insight to life as a Stage 4 patient http://www.medscape.com/viewarticle/854295?src=stfb.  

"Patients living longer with metastatic cancer are "pushing the boundaries" of what science and clinicians can explain in terms of survival, said Karen Gelmon, MD, a medical oncologist at the University of British Columbia, in Vancouver, Canada.

Long-term survivors feel like a "new species," for which healthcare providers ― especially oncologists ― were not necessarily prepared, Dr Gelmon told Medscape Medical News"

Thankful for me the Doctor in charge of the Resident Oncologist decided to keep me as her patient 6 months into my treatment as my Resident Onc had finished his rotation and was going to a clinic in the mountains.  Her specialty happened to be Multidisciplinary, at that time we had no clue the wild ride we were going to face.  Instead of brushing me off she listened to the pains and issues I described and figured out it was an Autoimmune issue, and being at a teaching hospital meant I could receive treatment at the same hospital.   A few test later and I was dx with an Autoimmune disorder called Sjogren's.  I had escaped chemo with little to no side effects to speak of except a sinus infection, well the Sjogren's made sure I felt basically all the side effects that the chemo's I was on had. 

The costs of treatment is beyond crazy even with insurance their still is the copay, I remember the first bill I got and the statement I got from the insurance showing who much the paid.  $15,000+ for ea chemo my part was like $2500 I happened to have 24 do the math, that was just the first chemo the other one being an older drug was like $500.  Then including the 7+ surgeries both cancer and sjogren's related, test after test, $70 copays, insurance is good but the cost is so outrageous and the longer I live the bigger my bills get.  Even tests and scans are an arm and leg, and I have had 1 PET Scan, 1 Bone Scan, 15+ CT Scans of chest/Abdomen, 30 Chest xrays, MRI of Brain, 4 cauterization of tear ducts, Sleep Study, exploratory GI surgery, Ultra Sound of Abdomen, Liver Biopsy while simultaneous getting a port installed on a hard table not in a normal surgery room with no laughing gas, Bilateral Mastectomy, Port removal of breast implant and taking extra skin off, 4 surgeries on my but to try and figure out what is causing and trying to correct Anal Fissure, Infection that hospitalized me, Walking Pneumonia, 30 days of radiation and the list can go on all this was a 2 year period.  

I have less intrusive tests since trying to get a handle on my Sjogren's due to my cancer my treatment has to be adjusted the normal protocol doesn't apply to me.. Life has become living 3 months at a time waiting for a bomb to go off, knowing that at some point the cancer is going to take you out the only question is when. 

#IamSusan