A friend of mine started a blog last month and I thought she was so brave. I also thought that I would never do something like that - putting my innermost thoughts out there for everyone to see. Then this week happened. The story really started last September.
My mom had been feeling bad for about a month (maybe longer) - waking up with headaches, intermittent nausea...eventually balance problems. She, a nurse, finally decided to see a doctor after the nausea turned to vomiting. She went to her Dr. who wanted her to have an MRI, which she declined (claustrophobic). They did a head CT and what showed up on there was worrisome enough that they wanted her to have an MRI. Stat. Turns out she had several "lesions" (nice way of saying tumors) in her cerebellum. Scary enough, right? They did a full body CT and found a lesion in her kidney. So, they tentatively diagnosed her with Renal Cell Carcinoma with metastases (mets) to the brain. We (my dad, two brothers, sister-in-law, nephews and of course, MOM) were all so scared. But, she was being diagnosed in the hospital she worked in. And they were so gentle with us. Maybe too gentle.
Everything seemed to move very fast after that...within two and 1/2 weeks of her diagnosis, she was moved to one of the best cancer centers in the country, she had brain surgery to remove the largest of the tumors. She was discharged to home 3 days after surgery. Crazy right? But, she recuperated well. After her stitches were removed, she went for radiation. 8 treatments. An hour each - no nasty side effects. We - ok, maybe just me - were lulled into a false sense of security. This is going to be a piece of cake.
Then, things seemed to move much slower. They did a PET scan. Were worried about some activity around her esophagus and in her liver. She went for an endoscopy. She had esophageal cancer (EC). I didn't really know what that meant. And, from my web search of kidney cancer decided I'd prefer to be in the dark for now.
Then, another CT scan. All of these tests and appointments with each specialist (downside of one of the best cancer centers in the country - every doc has a sub-specialty) took a long time. Then, because they now weren't sure what the brain mets were from - EC or Kidney - they wanted to do a biopsy on the kidney. We finally get the news in late December. About a week before Christmas. Three months into this. She hasn't even started chemo yet. We were all like, this is CANCER. Haven't we all heard that the earlier it's caught the better? Let's get moving. It was the most frustrating 2 months (after she finished radiation). Anyway, Mom's got Stage IV Metastatic Esophageal Cancer. See how I capitalized everything there? That's how it sounded. Oh, yeah and that spot on the kidney - a second cancer. Can you believe that? Mom has two cancers - Esophageal and Kidney. But, the kidney cancer is very early stage. They're not even treating it. Just watching.
My mom, dad, sister and I were all at this appointment. (Side note: my sister is also a nurse and one of the smartest people I know. You need an advocate - and you DO when dealing with something like this, she's your woman.) We asked all the questions about treatment options. Then, mom asks the question about how long. We all want to know. But, shit. We don't want to know. And, we definitely don't want to hear the answer. Doc very gently tells us a year. Then goes on about it's an average and it just means that 1/2 the people live less than a year; 1/2 longer. I'm not going to lie and say how we all just jumped into well, let's be that other 1/2. It was hard. Still is. She waited to start chemo until January 4. She was still feeling okay and was unsure how she would tolerate chemo and wanted to have as good a holiday season as she could. Wanted it for all of us. And while there was a tinge of sorrow, it really was a great Christmas. Fantastic, even. Then we had a Christmas party for my mom's whole family that we hadn't had in years and that was awesome.
Anyway...the reason for my post this morning. Mom's into her second round of chemo. After the first round, they did another CT to compare to the one they did in December after the diagnosis. And, if I had seen the December results in December, I probably would be shouting with joy right now. But I didn't. And I was thinking - and even told my mom this (who was so shocked that this is where I was she couldn't even tell me that this was not an option for her) - that maybe, just maybe, after another round or two of chemo she could be a surgical candidate.
One of the first things I did after the diagnosis was to sign up for an EC listserv. And, there are a LOT of people there who have survived a long time after a Stage IV diagnosis. But almost all of them have had surgery to remove their esophagus. It's an insane surgery. Very long, very complicated, huge amount of recovery. But, it's the closest thing to a cure. And about a week before my mom's CT, I'm hopeful. She's doing ok with the chemo. Is nauseous a lot. But, we all think it's working because her appetite's come back a bit. And, she's able to eat things now that she wasn't able to before because of the blockage.
But, her first appointment after the CT is on President's Day and I go with my parents to the appointment. And I see the CT results. And the December results. And the December results? WAY different than the October results. The cancer is freaking everywhere. Lungs. Liver. Pelvic Organs. Nodes by the pelvic organs. I had no clue. Me and my dad, apparently, are the only ones surprised by this news. I thought I was listening really hard to the Docs all this time, but I guess you only hear what you want to hear.
I was so shell shocked that I couldn't even SEE the good news. And, there was good news. Everything, and I mean everything, was smaller than it had been in December.
So, that was two weeks ago. I was ok for the first week. Made myself sick this week. And, this weekend? It's been my own private hell. I have an amazing support system of friends and family and family who are friends. But you see...if I say what I'm thinking out loud. If I say how afraid I am? Well now, that just makes it all too real. And I have enough real in my life. Writing it doesn't hurt as much.