A new world

It’s a new world (5/12/2022)

Here we go, into a new world, the world of being a patient with cancer. I am not a cancer patient; I’m a person (or patient) with cancer. Given the type of cancer I have and other factors, there is a high likelihood that I’ll be fine after treatment.

I’ve studied this world, gone into it many times with others, and taught about it for a number of years. I tried to teach people about the lived experience of being a patient with cancer. What is it like to be put into this world? I taught that it is a new reality. And so it is.

But I’ve never been here as a patient. I imagine that the reality for me is not as radical as it is for some people. I am not suddenly thrust into thoughts/perspectives of mortality and suffering.

History (4/20/2022)

A few years ago a CT for something else showed the presence of a nodule in my right lung. (“Nodule” = tumor <3 cm in diameter; tumor >3 cm = “mass.”) Subsequent imaging has shown steady growth of the nodule. It is now 2.9 x 1.3 cm and has changed in character as well as size – to the extent that the tumor board at my HMO is confident in initiating treatment for a primary adenocarcinoma of the lung. A PET scan showed no other suspicious lesions or nodes, so there is likely no metastasis. Treatment will include a biopsy to confirm the diagnosis, but it’s pretty much guaranteed to be accurate.

What does it all mean?

The fact that this is a less aggressive (than small cell or large cell) primary lung tumor with low likelihood of current metastasis is very good bad news. Treatment will be surgery (lobectomy) or radiation (stereotactic body radiation therapy/SBRT). In both cases, treatment is focused only on the tumor and adjacent tissue vs. systemic (chemotherapy) or a wider field of radiation (full lung). Two and five year outcomes show success rates for SBRT comparable to surgery (~85%) in cancers of this type.

The tumor has not been staged, but I assume it’s stage 0 or I (in situ).

I used to begin introductory lectures on cancer by saying, “There are well over a hundred known tumor types/malignancies and within those types and the cases resulting from them are countless variations.” The basic types of lung cancer, for example, include (1) non-small cell (adenocarcinoma, squamous cell, large cell [of various types]), (2) small-cell (several types, most notably oat cell), (3) mesotheliomas, (4) chest wall tumors, and (5) lung tumors that are distal metastases from other primary tumors – breast, for example. There are other, less common lung cancers.

All of us have knowledge or experience related to cancer in ourselves or someone we know or knew. But that doesn’t mean we know much about another person with cancer or about cancer in general.

I’ve spent much of my life involved in some way with people who have cancer and I’ve tried to live a life informed by these experiences. It’s a little weird to have cancer, but here we are. I count myself as very lucky.

Mistakes, bumps in the road, and lesson learned

Mistakes were made. The main one was that the doctor who told me on 4/13 that I have cancer forgot to refer me to the next step – radiation oncology. So there was a delay in the referral being made despite several messages from me to the surgeon and primary care doctor. I also had a pulmonary function test on 4/18, but couldn’t get an interpretation of the results until 4/25 or 4/26. It was weird being unable to get any response from the surgeon or primary care doctor. I finally talked with radiation oncology to learn that I had not been referred. I talked with the radiation oncologist on 4/29, 16 days after referral was supposed to be made.

The lesson learned was that I have to actively be in charge of my care and it is necessary to quickly follow-up on everything.

I wrote this to the surgeon on 4/25: “This delay is intolerable. I don’t know the legal definition of patient neglect, but neglect and disrespect for me as a human being are my lived experiences of this situation.”

Biopsy day (5/10/2022)

Got to Interventional Radiology at Kaiser on-time at 0830. Lady at front desk (Shirley) was warm and nice. I had the notion that she appreciates that this is potentially more stressful than some other procedures. The admitting nurse asked the usual questions and did a good job of starting the IV (a little more blood around the site than I expected, but there was also the fact that they planned on using my blood to plug the wound in my lung, so it just may have been a slightly bloody action). The nurse and I had some things in common and had a nice conversation.

I rode the bed through multiple double doors to the procedure room where I met several of the people involved in the procedure. The doctor explained what would happen and asked if I had any questions. I answered no, but told him that my wife asked that they spare as much of my chest hair as possible. I wondered then and now what his internal response was. I imagined that he could have been thinking, WTF, we’re here to biopsy a tumor (this is as serious as cancer) by sliding a needle between his ribs and into his lung and the patient is talking about his chest hair. Yes, and here is why: how I live is as important to me as how long I live. Sex and intimacy are important parts of how we live and Jean likes my chest hair. I’m not giving up a single thing unless I have to.

They asked me if I can put my arms up over my head. Okay. Then they asked if I minded them securing my wrists with my arms up like that. Okay, I said, “We must be in California ‘cause it’s getting a little kinky here.” Somewhere along the way they gave me versed and fentanyl.

I don’t remember what happened next until I was in the recovery room. We’ll see what the biopsy shows. As expected, adenocarcinoma of the lung (5/13/2022).

So, here we go.

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