MEDICAL UPDATE
To revisit my last post, I would like to say that the insurance transition worked out and now Medicare/MediGap have been handling everything very well.
I got really good news last week. I went into NYC to see my Sloan Oncologist, Dr. Vahdat. I enjoy seeing her, sometimes the news I get delivered is bad like most recently I fell down a rabbit hole of health, kept a smiling face, was told to be positive and not to be sad about the fact that a girl who's health was perfect was slowly declining from July 2016 - Jan 2018. Dr. Vahdat always breaks it down to me "I have not given up on you, that is why I am willing to be aggressive with your disease, but your disease was outsmarting us way too much." I think she might have kept the disease at bay with the trifecta chemo she and my NJ Sloan Oncologist, Dr. Wong, had come up with.
Well this combo has taken a body riddled with cancer and has shown that in this case, God is still watching over me. The best proof of this is not just my shrinking stomach, lack of ascites, lack of swollen lymph nodes up my neck and clavicles, dual pleural effusions, or dropping 02 saturation. Granted these are only a few of the physical improvements both my doctors agreed show that the treatment is working. So here is the news. All three of my tumor markers - CEA, CA-15.3, AND CA-125... were all somewhere in the mid-4,000s to the mid 5,000. Since the markers were so high, I promised myself in May 2017 that to save the mental sanity I have left, I won't look at the tumor markers until I see Dr. Vahdat. Well I saw Dr. Vahdat and all 3 of those tumor markers have dropped to the low 400s. THIS IS THE LOWEST THESE MARKERS HAVE BEEN IN 18MONTHS. I am speechless, blessed and thankful. As we all know this can change next month at my next follow-up in NYC, but I keep praying that maybe I will eeek out more time than I was given last October (not by my medical team).
I AM NOT UNBREAKABLE 24/7
This is long, but I also think its important for me to write this out for myself and also to educate the world about how your "Superhero," "Strong," "Fighter." etc, is not what you perceive her to be. I began to think about this again when I noticed an onset of depression shortly after hearing that great medical news. You would think that with this good news, I would have had a parade, a party, or even just screamed at the top of my lungs with happiness. Instead my stupid depression and PTSD issues started to sneak into my head and I literally spent 3 days miserable on the inside until I broke down this past Sunday and I needed to talk to someone.
Despite knowing that I needed to speak with my mental health team, pray, and journal to release these feelingsI kept saying "Enjoy the good news, the beautiful weather, go plant more flowers, go on a walk, do some crafts, watch some TV, go shopping, visit the board walk to walk and then sit, and to workout with the physical limits I have." Every little distraction I had, I had a viable excuse not to do it, at the time those excuses sounded viable and made me feel more depressed and fearful and anxious than I already did. I think the worst thought was "I do not deserve this Cancer, what did I do wrong, why me, why me my life has never been easy 24/7 and now I am not sure if I will ever know what an easy life is, because I honestly can say its been decades where I either wasn't stuck hiding away my anxiety and depression, which I channeled into being PERFECT - NO HARM WILL COME TO ME IF I DO EVERYTHING THAT DOCTORS AND TEACHERS AND PARENTS TELL ME TO DO TO AVOID HARM.
In 2010, I actually was hitting breakthrough mental changes, agreed to go back on medications, felt joy, and actually did not want to spend everyday I had off from school or work at the GYM for 2hours and then on my couch, bed for the rest of my day feeling fucking sad. 2010 I noticed I wasn't forcing myself to leave the house, to paint on a smile, to pretend my life was ok while treating people who had similar issues.... I could go on and on at how depressed I was and how greatful I felt when I saw the light, began to set career goals etc. That changed when we found the lump, I wilted back into the anxious mess. When I am anxious, I retreat, I avoid, and I am scared to ask for help.
There has been very few times from 2010-2018 where I have felt that anxious, which brings me to feeling broken, alone, lost, sad, and waiting in fear for the next tumor or other bad scenario to eat more time from my life. I can count these moments on one hand. Yep. I have had days where I was sad, anxious or angry, but the emotion passed and I was able to work through it. Living with cancer for 8yrs and the fear of recurrence for 3 of those years, which turned into this debilitating fear of death. I try not to think about it, but when I think about death, depressive Cait takes my hand and brings me back into the desperate, familiar hole my mind spent a decent amount of my life in. Trust me no one caused me to be depressed or anxious. I literally remember being 9 and having a panic attack in my bed room and puking instantly. No trigger then, out of no where. Then with small obstacles and the loss of many family members to Cancer, I felt that the only thing I could do was push push those feelings away and avoid. Look I knew nothing about therapy or psychiatry and how that field would save my mental health & eventually become my passion, because I wanted to give back to people something I know and have experienced and seen work. Unfortunately, I would spend years to avoid dealing with these feelings with great grades, do everything in anticipation to make my parents or friends happy and ignore my needs, drown myself in sports, and always have great group of friends so I can hide amongst the conversation without showing how I felt about myself. Eventually I found friends I could talk to and a husband I could talk to & learned that I cannot make anyone happy, I can only try to find ways to get myself happy.
Last but not lease a wicked sense of humor. Using my sarcasm and humor has become the best way to hide my feelings especially if its a joke about an issue most people would not laugh at...The best example of this that I can remember was the first time my hair was growing in. Inside I felt like I looked like a hot mess, I did not recognize myself and all I saw was a bad 80s perm-mullet. In humor, I started to refer to myself as John C. Reilly. In the picture below thats what I would laugh and say well at least cancer made me a doppleganger for John C Reiley with my awesome hair.
I hated that hair, I hated that it fell out and I hated that I had to wait for it to grow in only to lose it 3x in 2017 and again in 2018. I hate being bald. I am not Professor X or Powder, which I joke around and say I am. Under those jokes is a girl, who does not feel sexy when she touches her face. I am a girl covered in scars, I was stripped of my hair, my flat amazing stomach I worked so hard for... I could go on and on, but the reality is I started to feel confident about my looks and cancer in 2015, which was slowly torn away with the brain tumor and craniotomy followed by the medical nightmare after medical nightmare.
I could go on and on about these feelings in the past, but recently my humor is not even masking how I am feeling. So I am left feeling broken, vulnerable, exposed, and alone. You can feel alone and be in a crowd of people who love you. For me that aloneness, is losing the ME I always dreamed to be to a disease. That me will never magically come back if the cancer goes into remission (which would be amazing, maybe even cure me of these stinky thoughts), the me I thought I would be was taken from me, I had no choice. I thought I had choices but my health got in the way of anything I tried to reach for in my career and I retired at 32. I can't mentally handle being a therapist when I was falling apart physically and mentally from a disease that slowly is stripping the world I was trying and hoping to build for myself.
I am not sure what to say. I dislike that I no longer have the CHOICE to have children with my husband. I am sadden that a career I loved, I can no longer do unless I want to lose myself in the process. I couldn't help people when I was struggling holding my health together. I will never buy a house. Our savings has literally gone to medical bills and to pay other bills while Kyle remained out of work multiple times to be my primary caregiver when only a disability check & unemployemnt was coming into this house that was orginally built based on a household with two people who had stable work and appropriate salaries and a SAVINGS.
Cancer has given me scars, turned my body into a human science experiment, took away the abilty to be the athlete, took away the kids I will never get to raise, I will never get to be a Mom like my Mom was, taken away this never ending pool of energy, chased away people whom I thought were my friends and family, has made it hard to focus on reading books because chemo fried my brain, and it has taken away that idea I held for years about growing old with Kyle as something that made me happy and smile. These thoughts I know trigger more depression, hopelessness and fear.
I am sorry readers. I have been trying to end this on a POSITIVE NOTE, but I can't. I have no energy to even try to be POSITIVE and I know that something needs to happen to get me out of this mental rut. I hope by recommitting to therapy, I will feel much better soon. Sorry, people. But YAY Cancer is shrinking.
SADNESS OUT
