I've noticed that some people are uncomfortable when I talk about my illness. I do not intend to make people uncomfortable. At this time in my life, surviving whatever you want to call my tumor/mass/neoplasm/sort of cancer is a big part of my life. Thankfully, because of counseling, proper medication, and feeling relatively normal, my illness no longer consumes my thoughts. But I can't ignore it. When I talk about it, I am not seeking sympathy. But when the topic of the complex origins of cancer comes up in conversation, I can't help but add my personal experience. Isn't that what conversation is? It is my hope that as time distances me from my surgery and my follow up imaging tests remain clear, this will become more a part of my past than a part of my being. I really, truly had hoped that once the tumor was gone and the surgical wounds had healed, I would be over and done with it. That's most likely the case, I'm most likely done with this pseudopapillary tumor. The doctors say it "probably" won't come back. Probably. So while I'm very probably done with pancreatic tumors of unknown origin, I'll never be completely back to how I was (body and mind) before surgery.
Once I learned I'd be an oncology patient for the rest of my life, the wheels of negative thought started turning. Oncologists work with cancer patients. Because of the lack of knowledge about this tumor and its unpredictability, I will forever be followed medically. Better safe than sorry, I guess. Especially because if it comes back, surgery is again an option, unlike what I call "real" pancreatic cancer (adenocarcinoma of the pancreas). Surgery is only an option in about 15-20% of pancreatic adenocarcinoma patients in the first place, and a second surgery is nearly unheard of. I am acutely aware that I have it better than most oncology patients. I think my oncologist likes seeing me because he periodically gets to give me good news and odds are our routine of him saying "your cat scan was clear" will continue indefinitely, or at least until I have to get a new oncologist for whatever reason (relocation of him or me or his retirement, basically). In the unlikely event that the tumor does come back locally or as a metastasis, I will deal with it then, or at least that's what I tell myself. Living with that knowledge, however, has taken a toll on my psyche. In an earlier post I referenced my half-written blog post about my depression, and since my depression/anxiety make me uncomfortable, I'll tack in on to this post. Here it is:
I am a high-functioning depressed person. At least that's what my cancer counselor (licensed therapist) told me. I have an "adjustment disorder" or "situational depression", something in my life caused my depression. When she told me I was a high-functioning depressive, I must have given her a wacky look because she went on to explain that I was still able to take care of things in my life that needed care. I went to work every day. I made dinner. My kids' needs were met daily. I was/am able to go on like normal, but only sort of. When my depression is getting the best of me, it is so difficult to get pleasure from things I normally enjoy. That doesn't sound so terrible, but add a moderate dose of anxiety and my rational self disappears the by way of the white rabbit. I get stuck in a hole of obsessive "what ifs" and "if onlys".
I sought help when the need for knowledge about my tumor turned into an obsession that stopped me from functioning normally. This was uncomfortable for me. I was raised to think seeking such help was a sign of weakness (I know you're reading this, parents, but that's my perception.). I brushed aside my discomfort and went to my medical practice's mental health office. I left with a referral to Living Well Cancer Resource Center. It would be a couple of months before I worked up the courage to call Living Well, but I eventually did and saw a counselor who helped me develop strategies to get out of the rabbit hole. This was my first experience with counseling, and I would not hesitate to go back if I am in need of a "tune up" or to recommend counseling to someone who is having a rough time.
I have said this before, but I am not seeking sympathy when I talk about my medical woes; I am coping. I am not comparing my awful situation to your awful situation or to universally awful situations. I know it's really not that bad in the "grand scheme" of things and I do believe I have the gift of perspective. It took a whole lot of uncomfortable to arrive at my new normal, physically and mentally. I'm happy to be here and "normal," though I still need help from time to time. I truly appreciate my health, my body, and being alive. Talking about our experiences is not always comfortable, and I'm not going to apologize for that. I wish you all healthy bodies and minds, and the ability to seek help when you need it. Cheers.