Which do you want to hear first, the good news or bad news?
Now that I’ve learned definitively that I have a recurrence of cancer in my liver, that I am not “in remission” anymore, that I’m facing a new episode including surgery, chemotherapy, tests, hospitals, nurses, complications, recoveries… setbacks.
“Oh my God – What the FUCK?… I mean… what the FUCK!!?” Chris, my brother-in-law, echoed the disbelief already in Matt’s and my minds when we told him over the phone of the new diagnosis. We saw him and his daughters off to the airport just yesterday, after a weekend of sunshine and great sunset meals and river playing. Everyone one was healthy and fine yesterday. Today is grim business for just us two.
Matt and I have been through this once before. Getting the diagnosis, calling doctors, family, insurance, researching everything the doctors told us for hours and worrying about what’s ahead. The difference is that this time I have WAY better insurance (thank you Obamacare!), being more familiar with the process, we are better at putting the dysfuctional worry aside. Still, at bedtime the worry and unknown inevitably come back in the dark and worms around in our minds for hours.
I always take THE BAD NEWS first:
So the back story is, per doctor’s orders, I maintain quarterly blood tests, coordinating with my oncologist in Santa Monica whom I have worked with for 2 ½ years. I saw him last in January 2014. I also maintain annual colonoscopies and CT (Computed Tomography) scans per my new gastroenterologist’s orders. All have shown good results, and to my knowledge I have been in remission for over two years. Back with the original 2012 diagnosis for colorectal cancer, I had a CT scan reveal two liver cysts which concerned the doctors that they could be metastases from the rectal tumor, yet they could also be innocuous, a normal liver cysts that lots of people have, a reaction to birth control pills or some other chemical, which are unlikely to become threatening. The 2012 PET scan showed that these spots were of no concern.
*Positron Emission Tomography (PET) is a test where a radioactive isotope introduced in the blood stream shows thermal “hot spots” where active cells appear illuminated in the results, whereas CT, or CAT, scans use a large number of 2-D radiographic images to create a 3-D image of the inside of the body.
Last week, during my second annual colonoscopy check-up, I had a precancerous polyp removed from my colon. Nothing unusual or concerning, these are common and easily removed with no further action needed. The CT scan, a few days later, showed two “nodules”, or solid masses, which were new since last year. This result combined with the most recent blood test revealed elevated CEA levels (a cancer marker), caused my GI concern. He ordered a PET scan and recommended an oncologist appointment to discuss the results. Anxiety!
The scan was on Friday afternoon. When Matt and I showed up for the exam, we were surprised to find that it was a full-body scan. Was this a mistake? The spots were on my liver, after all. But it made sense even before it was explained; of course, if the cancer could spread to my liver, then it could also spread to the lungs, the brain, the bones, anywhere. I happily did the PET, then went home thinking, this is all a big joke and they’ll see that it’s nothing! Just the same old cysts, maybe they haven’t looked at this year’s and last year’s scans side by side? I’m healthy and happy in my life now.
Then there was a bleeping holiday weekend and most offices were closed on Friday, and all offices were closed on Monday, and it was hard to get a hold of any doctors or staff to ask questions, even to make appointments. Ok, so I got an appointment with the oncologist for Tuesday, thank goodness. All we wanted to know now was what the PET results were.
The PET showed very clearly hot spots where the two liver nodules were (meaning activity, meaning cancer!!). Do you know how big a liver is? I really had no idea. It’s pretty huge! Anyway, there’s one nodule on the left and one on the right. The one on the left (or my right) is 3x3x4 cm, and the other is 2.5cm.
Holy lordy lord! That sounds really big to me. Considering we are talking one year ago that there was nothing but the cysts, and the CEA level in the blood was not alarming until now, either, these nodules sound really unreasonably large. Listening to what the doctor was telling me, all the worries I’d had during the night over the past weekend were coming back, and as I tried to focus on his words, I was intensely aware of my heart rate and how sharp my awareness was. Especially for Matt, who I knew was sitting next to me sweating outwardly and panicking inwardly.
THE GOOD NEWS IS:
The nodules are compact and “localized” meaning they will be easily removed with surgery, and I will “still have a lot of liver left”, said the doctor. “Oh good!” I thought, although I like my whole liver, ayayay… frowny face.
There are no other occurrences than the two liver nodules.
The cancer has not proliferated throughout the liver, in which case they wouldn’t even attempt surgery, just attack with lots and lots of chemo.
So, I guess for a bad scenario, it could be worse! The recommendation of Dr. Look, the oncologist is to operate immediately to get the cancer out, and then they will know exactly what kind of cancer they are dealing with and will design a chemotherapy for it. This one will likely be systemic rather than targeted, so I’ll be shopping for wigs and warm headwear.
Now, I do have a second opinion with another oncologist scheduled for later this week, so, more to come.
Oh, my poor Matt. When we met I was the perfect picture of health and vitality. I had few needs, was a great friend, partner, lover, playmate, I added value to his life by being his foundation, loving unconditionally and taking care of anything he needed the best way I could. Now I feel like a real bummer! A disappointment. I expected that I would be healthy and strong into old age, take care of my darling husband, my parents, anyone else who needed me, and I’m being taken care of, now, in my 40s. Although I am staying positive, it’s hard not to not go to the dark places.
What the heck is my body doing? This is completely out of the plan! Not that there was a “plan” per se. I feel alienated from my body, like it’s letting me down, mysteriously letting illnesses get in, getting weak. But it’s my body. It’s life. And just when I was getting everything back in sync, seeing a NP, a Naturopathic Physician, who is helping me reestablish an equilibrium with diet and lifestyle, peace of mind, etc. Sometimes, she said during a recent appointment, these diseases are not caused by immediate environment, or just the previous generation or two. These diseases can go back 3-4 generations to the conditions our ancestors experienced and telegraphed through the generations. Also, as was brought to my attention,that the ancient Egyptian remains show evidence of cancer.
Makes sense to me, because how could some of the healthiest people still get terminal illnesses? The answer is, it’s beyond them. This notion, at least, allows me to believe I really didn’t do anything “wrong”, and I can blame my ancestors. Hee hee. Small comfort.
Good news and bad news aside, ONWARD! A new chapter begins.