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I started EMDR therapy yesterday. It was… Odd. Having to focus on the memories and emotions that go with them, especially when I have suppressed them for so long, was difficult in itself. Concentrating on them while watching the light moving left to right and back again… Wow! Talk about feeling deeply again. The tears would come spontaneously, or a new thought would pop into my head, and we would concentrate on that.

Thinking about that moment when my surgeon told me the morning after my surgery that I had cancer. Lung cancer. Adenocarcinoma.

… It was a fluke that it was ever found. In order to stay field certified to wear level B HazMAT protection for my day job, I had a medical monitoring appointment. I was asked if I wanted a chest xray, since I had not had one for a few years. Sure, why not? No problem. Had the appointment, got blood drawn, hearing and vision tests, spirometry, and that chest film. After waiting 6 weeks for my certification, I called my employer’s industrial hygienist and left a message stating I had not gotten my clearance yet. Three hours later, I got a phone call from the MD for the occupational health group we used. “There is a problem with your xray. There is a nodule. You need to follow up with your physician to find out what it is and get cleared.”

“Wait… You’ve known this for 6 weeks, and just now telling me?”, I asked. He gave me a bullshit answer, telling me he was waiting for the radiologist to tell him the next steps. Lying bastard. It was on the radiology report that was sent to him 12 MINUTES after I had the xray done! “Recommend Chest CT without contrast”. He only called me when out IH called to find out the status.

I immediately contacted my personal physician who ordered a walk-in CT with contrast. I left work and had it done. More tests came after… Blood work, a PET/CT scan, and then, a visit with a thoracic surgeon. Which led me to that morning after I had surgical biopsy and a possible removal of part or all of my left lung.

I was sitting in bed. I couldn’t lie flat. I couldn’t breathe if I did. I had a chest tube, a large bandage on the left side of my chest, IVs, and oxygen. It hurt like hell, even with narcotic pain meds.

“How are you doing? It’s cancer. Adenocarcinoma. It had a lot of mucous around it, and that’s why it wasn’t obvious on the PET scan.” And him telling me that he took 25 percent of my breathing capacity away while I was under anesthetic. I asked him the next step? Chemo? Radiation? Nope. He felt confident he got it all. We’d monitor with CTs every 6 months. Now, I needed to heal. But…

I lost the left lower lobe of my lung. My lung. MY FUCKING LUNG! I could hardly take a breath at that moment due to atelectasis (He collapsed my lung to do the surgery), and the chest tube sticking out of the side of my chest, that the end of as it turns out, was up near my shoulder blade, and if I moved or coughed caused excruciating pain. Pain meds helped minimally. I was walking the floor of the hospital, hunched over, huffing and puffing like I had gone running for my life. Is this my existence now?

I was in shock, thinking back on it now. My brain instantly numbed me to that horrible news that I HAD CANCER. My goal at that moment was to leave the hospital and go home. I’ve beaten crap before. Not cancer, but other issues. A kidney problem that nearly killed me. Spondylolisthesis that incredibly unstable and was painful and nearly took my ability to work in EMS and even to walk. “That which does not kill me makes me stronger” kept popping into my head.

But, with the chest tube in, I wasnt going anywhere. So I sat there in bed. I had a few visitors, but I really began to feel very afraid and alone. And angry. I had a few visits from Kaiser nurses, including one who asked me, “Are you going to quit smoking?”, a lady with a therapy dog who had no clue why I was there, but offered me to spend a few minutes with her dog, a social worker who left a pamphlet… On smoking cessation. I told her I don’t smoke. “Really? Well, let me leave this here anyways.”, and then another nurse who also asked me if I was going to quit smoking. She was the one I replied, “I don’t fucking smoke! I haven’t since I was 15!” I have lung cancer, so I MUST be a smoker, right? What morons. That social worker visit was the entire extent of Kaiser assisting me with the stresses of my diagnosis until later in the year, even though I wanted and desperately needed help.

One of my visitors, a friend from EMS, was there when the chest tube was pulled (Warning! That’s the link to the video when I had it removed. Not for the faint hearted.). Not a pleasant experience. I had to lie down flat for it. But, being a fellow medical professional, he was fascinated by it. Suddenly, the horrid pain was gone! Yeah, I still hurt, but not like when that tube was in my chest. I went for a walk with my friend, and felt a lot better walking, pushing my IV pole as we walked the floor.

So when I was offered the chance to be discharged, I took them up on it. Bad idea. In hindsight, I should have stayed another day or two. Thinking back, I was high as a kite, and they should never have even offered me discharge at that point. I even had to wait 2 hours in the discharge pharmacy for my pain meds. Another friend took me home. And try and rebuild my existence. For the record, I was discharged just over 24 hours from admission.

Slowly, the thoughts of what happened, my diagnosis, and information I researched, began to work on my mind. And not in a good way. (To be continued…)

A few friends of mine are aware of my issues the last few weeks: Severe depression, anxiety, lack of sleep, and getting very teary-eyed when I am reminded of my lung cancer diagnosis, problems with being blamed for my cancer when I was still in the hospital (“Are you going to quit smoking?”), not once or twice, but three times in less than 24 hours (For the record, I am not a smoker. Like most teens, I did dabble in cigarettes when I was 15. But that was it.), requesting mental health services for support, and being bounced around between psychiatry and oncology, no one taking responsibility for my followup visits until I complained, etc, etc., i.e. falling through the cracks at my provider, Kaiser Permanente. Health Education was a joke. They photocopied a page from their list of classes, which had 2 support groups listed for cancer patients and said that was all they offered cancer patients. I know that is BS, from friends who have had other cancers and gotten what I am now considering the red carpet treatment. If you have breast cancer, Kaiser is all about helping, comforting, nurturing, and treating patients with respect. Not lung cancer.

Put bluntly, I felt angry, abandoned, and forgotten by my providers. I would try to get help, and finally hit a stonewall, get frustrated, quit trying, and suck it up. I’d pour myself into something, usually EMS, where I could forget my frustrations for a while, focusing on my patients. But my feelings would creep back at times. My sleep patterns became worse and worse. I started having issues with memory… I’d forget a lot. Most of last year is still a blur to me, with moments of clarity at times. Facebook has been a good reminder to me of my past year. I filed a grievance, only to be forgotten again after FINALLY being assigned an oncologist to follow me, nearly 5 MONTHS after I was diagnosed. That should have been day 1, in my opinion. I also saw a pulmonologist, where I found out I was at 74% of my former breathing capacity, after losing the lower left lobe of my lung in May last year.

I just kept wearing my “mask”, pretending to my family and friends that everything was ok. I’ve learned over the years to do it fairly easily. In EMS, we have to put our personal thoughts and emotions aside and care for our patients. It’s a coping mechanism for those things we can’t unsee.

Fast forward to May, when I had my second post-op CT scan. I had to remind Kaiser it was due. Again, I fell through the cracks. Although it was clear of any evidence of cancer, I had been feeling lousy; hurting in some odd locations without any injury that I could recall, and had been dealing with anxiety for weeks before the exam. So much that I was so afraid to find out the cancer had recurred that I almost didn’t have the scan. It took a helluva lot for me to get on that table. And help from a great friend tall in to me and helping me to calm down. I sucked it up again and did it.

Then, 4 weeks ago, I received an invitation to a cancer survivors celebration at Kaiser. My first thought was, “Where the f**k were you when I needed you?” I then began crying… and didn’t stop crying for a few hours. Clearly not the response I should have had from a genuine invitation to celebrate that I AM a survivor. This anger and sadness persisted. I couldn’t shake it. It brought back the memories of the past year… and was like a broken record playing in my head over and over and over again.
I went to the Kaiser website for cancer patients, and read a statement that I feel is a pure lie. Especially since I was was not treated the way they state.

Moving Forward

Our understanding of cancer extends beyond the disease itself. We know that patients need a committed and supportive partner who’s in it for the long haul. Our emphasis on multidisciplinary teams, prevention, and wellness ensures that they receive the follow-up care and ongoing support that they need as they move on with their lives.

It seemed hurtful and hypocritical give what happened to me. And made me more and more upset. I posted a rant about it on Facebook, which garnered some interesting comments, some of which validated my belief that certain cancers get the Cadillac treatment, while others are simply tossed to the wind to figure out on their own what to do. It’s wrong. No cancer patient should ever be or feel abandoned by their medical providers. Period. I sent Kaiser Thrive a private message on Facebook explaining that their website was stating things that weren’t true, and that I was in dire need of help. They called me after I provided my phone number, and they began a formal grievance on my behalf.

In the meantime, one of my friends reached out to me in a private message and helped convince me to contact psychiatry at Kaiser and go in for an assessment. I got there during the times they told me they were doing assessment, only to be told they stopped doing them. The assistant at the window said she would contact one of the therapists that does assessment. She didn’t. But I didn’t leave. Finally, I went back to the window and spoke with a different person, who let me know the other assistant had not done what she said she would. She said that it was after the deadline, but I pointed out that I had been there for 45 minutes before the normal deadline. And then, as I got more upset, I said if I wasn’t assessed, I was heading to the ER, where they would have to assess me. A few minutes later, one of the therapists came to get me.

The long and short of it, after I was assessed, and scored, was that I needed to be seen very urgently. I knew that. I just had not gotten in to see someone, since psychiatry bounced me to oncology, and oncology bounced me back… over and over. I never got seen once before that day. I was given an appointment for a few days later, and muddled through the weekend. I was taken off my day job to allow me a little time to de-stress. When I saw my assigned case manager, she listened to everything that had been going on. I was a mess. Sad, angry, upset every time I thought about this past year. I was diagnosed with major depression and trauma. Post-Traumatic Stress Disorder. Along with a bit of anxiety.And she realized I needed some intensive therapy. And quickly. Therapy I feel I would not have needed had I been treated properly from day 1.

I began an intensive program, including therapy, psychiatric visits, learning new skills, including mindfulness and meditation, and was placed on medications to try and get me to a point that I could think clearly, and sleep clearly. 4 days a week, for 3 hours a day. It became a security blanket for me as I got the help I needed. Slowly, over the past 2 weeks, things have improved dramatically. I was connected with a cancer survivors group. And had a minor medication adjustment.

I’m not done on this path. I’ve just begun it. I “graduated” from the program today, and am ready to begin managing this with the continued assistance from them. While I am grateful for FINALLY getting help, I still feel like I was tortured this past year.

Today, I finally did it. I reopened my online existence off Facebook or Twitter. I need a place again to write what I want without anyone getting butthurt and reporting something they find offensive or not to their tiny-minded liking. No, I don’t plan on it becoming more than just my own corner of the internet. I need a place to write again. And it is part of my healing process. My journal. My journey.

This blog is my own personal ramblings, and mine alone. If I let you in to view it, it is because you are my friend or family, and I love you.