Accidental Discovery: First Entry in What Might Be a Cancer Journal

Wed, October 29: 

It's 3:30am. I wake, go pee, and get back in bed. Hmm, I still feel like I have to pee. Try to sleep, need-to-pee feeling slowly turns to pain, then more severe pain. At 5:30, I finally realize that it's most likely a kidney stone and get up to take a flowmax. Back to bed. Still pretty bad pain. (Maybe a 6 or 7? Those numbers are so weird, only that low because the hernia pain, when it's bad, is much worse than this.) Finally, around 7:30, I fall back asleep. 

When I get up, I immediately call my urologist. She is amazing and can fit me in the same day. I go first to acupuncture, then to her. They have me pee in a cup. Later, she brings that cup into the examining room and shakes it like a rattle. There are lots of tiny stones, like sand or gravel. She orders tests.

 

Tues, November 4:

I go in for the CT scan. When the results come, they have found that the kidney is fine, but there are three other weird things. Two are no big deal. But there's a nodule on my lung, and it has grown since the last CT scan. (I look later at my records and find no mention of that nodule from the previous scan. Hmm.) I read what I can online. It could be benign, but the speed of growth and irregular edges makes cancer look more likely. I tell people there's a small chance (13%, based on the size) that I have cancer. 

They order another CT scan, focused on the lung. I start making to-do lists:

• I want a naturopath on my team, like N has. (She has cancer and is writing notes to friends on that caring bridge site.) The doctors, and there are so many of them now, each look at one aspect, and mostly only think in terms of tests and drugs and surgeries.
• I want a personal cook who can help me make keto-friendly food, because cancer loves sugar and keto is all about not eating sugars (aka carbs), or at least not much. 
• I need that book I read 6 years ago, when I had uterine cancer (treated with a total hysterectomy, no radiation or chemo needed), The Metabolic Approach to Cancer. I can't find it on my shelves so I order it from the library. I can't get it right away there, so I order it from the bookstore too. 
• My friend Z suggests ordering modified citrus pectin to take as a supplement. I do that. 
• I try to get a homeopathic remedy recommended by N's naturopath, but give that up for now. 
• 'More physical activity' is on my list, but I know that's hard for me to get myself to do.

 

Sat, November 8:

I get the scan. I'm frustrated when I have to wait for results, since this lung nodule sounds like it could be a bad thing. The internet says CT scans often find benign lung nodules. (1 in 3 CT scan finds a lung nodule. Most are benign.) I just want to know. I think it's Tuesday when I finally see. They give all 3 dimensions, both currently and 21.5 months ago. I do the calculations. It is 4.8 times as big as it was previously. That a doubling time of 9.5 months. (I taught math until I retired.) My doctor orders a PET scan and a visit with a pulmonologist, in case I need a biopsy.

 

Fri, Nov 14:

The PET scan is interesting. They inject me with radioactive sugar water. The guy tells me it has flourine to make it radioactive. It's in a thick metal cylinder. He tells me it's lead, so the radiation doesn't escape. I sit there for most of an hour. I had looked it up (on reddit) and seen that some places prohibit even reading during that hour. Others allow it. I could read and the guy said I could make phone calls. I talk with Z, who says she'll join me for a meal after. When I mention that Q is coming she says she won't come then. (She loves Q, but was busy and thought I preferred one-on-one.) I begin to cry. I say, "This is so tangled. I don't want you to feel like you have to come. But I really want to see you." She says she'll come. I say, "I guess this is more stressful than I realized." I laugh. "It just took a little trigger to get me crying."

The scan is in the same machine as the two CT scans; it just takes a bit longer. Breakfast/lunch is delightful. Back home, there's a message from N. Her naturopath has recommendations for PET scans. Some things to do before (too late for me), and some after. I need to take a nap before I can think. Once I'm back up I run out to get Vitamin C and magnesium citrate. I take large doses of each.

And then my doctor calls. "The lung nodule showed minimal uptake, that's good, but we'll still want a biopsy. But something else showed up. There's a lesion in your upper left arm bone." When the scan results come the next day, the language used is that it's "avidly hypermetabolic". Not good. The only cause they think likely is metastasized cancer. The two other possibilities, bone cancer and something benign, are rare. This is when it changes from I might possibly have cancer to I probably have cancer.

Finally, a friend has a recommendation for a naturopath. I text him.  

 

Mon, November 17:

Video visit with the pulmonologist who will do the biopsy. He seems fine.

 

Tues, November 18:

The naturopath's office gets back to me in the morning. We schedule a 10 minute free phone consultation around noon. He talks with me for over half an hour. He says to wait until after I get the oncology visit to schedule an in-office appointment.

The oncologist's office calls and wants me to come at 8am. I don't want to drive in morning commute traffic, but there's nothing else. I end up taking it.

 

Wed, November 19:

I have to get up before 7am to make it to my 8am appointment with the hematology oncologist. (Hematology is blood, bone marrow, and lymph systems. Also, that drive is 12 minutes when done later in the day, but before 8am it will be much longer. The night before google says it could take 40 minutes.) In the morning google says to take the Arlington instead of the freeway, and I'll make it in 25 minutes. It's a much nicer drive than the freeway, and it takes 27 minutes. I get there a minute early, yay me.

I fill out lots of paper work. When I'm done, my doctor arrives. She explains well, asks good questions, and listens well. I like her. She shows me the second CT scan and the PET scan. She spends over an hour with me. She orders blood tests, including two cancer markers. She also refers me to a radiation specialist and an oncology osteosurgeon. 

I get the blood tests in the same office, and then drive home. A few hours later, I get a massage (at home!), by my massage friend of many years. I get a whiff of something and ask if she has put perfume on. "No, I never wear perfume. Maybe it's the sheets. My mom washed them." I'm almost in tears. Chemicals can do that to me. I ask her to put them outside. I get her some sheets of mine. While she's putting them on the massage table, I open windows, and turn on the fan. In 5 minutes it's faint enough that I can turn off the fan and close the windows. She gives me an amazing massage, and I feel great. I ride my bike later. (I got a great new bike, but I'm not in the habit yet of riding it. I'm happy to be doing that.)

 

Thurs, November 20:

Blood tests show nothing bad. Yay. 

I see my naturopath. He gets a history of all my physical issues. Toward the end he suggests that I make sure my pulmonoligist knows about my sliding hiatal hernia before doing that biopsy. I'm so grateful for that advice. It seems important, and I would not have thought of it. It was supposed to be a half hour. I think it's close to an hour. He only charges me for 45 minutes.

I pick the book up at the bookstore. I've been reading the library copy, but now I can start underlining and highlighting and dog-earing it. I thought keto was 50 grams of carbs a day or less. The book says to stay under 25 grams. Yikes. I will need to find alternatives for my toast (with eggs, egg salad, tuna salad, and chicken salad). If I can ditch that and the rice I've been eating, I might manage it.

 

Friday, November 21:

The modified citrus pectin came yesterday. I take my first dose.

I talk to M, who provides cooking services. She is interested in working with me. I'm taking her out to lunch on Sunday, so she can taste the gomen (Ethiopean collard greens) at Cafe Colucci. And then on Monday we'll make cole slaw together.

And that's today. I might not have cancer. That would be great. If I do have it, I am being proactive and planning my journey through this jungle myself. Research shows that being proactive increases the chance of positive outcomes. Good.