3-11-20: New Journey. Big Mountain. No Summit.

The Short of It:

Diagnosed in late January with metastatic breast cancer: spine, ribs, pelvis, shoulder blades, spleen, liver. It can be managed but, at this point, not cured. I will have good days and bad days. This is a big mountain I’m climbing with no summit.

Rules of Engagement:

Do not ask me, “How’s YOUR cancer?” (I’m not taking possession of these wayward cells. I’m trying to get RID of them.) DO say, “How’re you doing?” “What are they doing for you?” I’ll give you as much detail as you’d like or no detail at all.

Do not ask me how long I have to live. (I don’t know. IBrance is only 6 years old. )

DON’T say: It’s God’s will. God doesn’t give us more than we can handle.

DO send cards, texts, emails, phone calls.

DO tell me about your trips and adventures.

Be prepared for hearing how shitty I feel and don’t try to fix it. (They keep telling me I’ll feel better.)

DO let me cry if I need to cry. Hugs are welcome.

DO ask if there’s anything you can do. Mostly staying in touch is the best medicine.

I thought I kicked breast cancer 20 years ago with a mastectomy, chemo, and radiation. Apparently, at least one cell survived and has decided to party. I’ve lead a very healthy active life since my initial “cure” and this diagnosis has filled me with shock, sadness, and a bit of anger.

Scans, tests, and a liver biopsy later, I’m on an Estrogen blocker and IBrance, a cell cycle disrupter for E+, Her2 – disseminated breast cancer. I recently had my spine radiated for 2 weeks to remove the ice pick of pain out of my back. Unfortunately, my throat was in the way and now I can hardly eat or drink. Imagine Chernobyl in you esophagus. I’m getting an IV of fluids here as I type.

My doc is wonderful. She remains “optimistic” and says I have years. I want at least 30.

My husband, Rick, says that our failed attempt at Lucy’s Footpass in Kings Canyon last August cannot be my last backpack trip, although there’s a spot in my pelvis where a screw tip for my titanium hip will have to be radiated and grow new bone first. The Grand Canyon rafting trip is off. Doc doesn’t want me breaking vertebrae in the bottom of the canyon. Darn.

While calls, cards, emails, and texts are my lifeline of connectivity, this will be a good place for current updates and insights on my journey – medically, emotionally, and spiritually. I told God during the initial bout that I was willing to learn ALL the lessons I needed to because I was NOT going to do this again. Well, apparently there is more to learn. Follow along. It’s gonna take a village.

Everyone’s Gotta be Somewhere.

So I run around like a mad woman, packing, paying bills, tying up loose ends, sending off some last-minute Christmas cards, getting the three dog/house sitters coordinated, and finally hit the hay around mid-night. The alarm sounds off at 5:25 and I’m up to do an abbreviated morning routine before our neighbor drives us to the Lafayette BART station for our one hour ride to the San Francisco Airport. I stare into the mirror hoping I look better when I touch down in New Hampshire to visit with my sister, her family, and my NY transplant son.

All goes well. We’re flying a southern route with a stop in Dallas-Fort Worth and are pleased that we’re avoiding Chicago which has pretty much closed down due to a blizzard the size of my fist on the NOAA website.  The BART train rumbles in just as we reach the platform.  I’m feeling lucky today. Even at the dark hour of 6:20 am the BART car is full of newly groomed but sleepy commuters. Lugging our luggage, my husband and I find separate seats. No problem. I’ll be spending all day on the plane nudging his elbow over onto his side of the armrest.

Was I even through the Caldecott Tunnel when I got the phone call on my cell with a recording telling me my flight was cancelled? I look up to where Rick is sitting and see his body twisted back toward me, his phone to his ear, and his gaping mouth filling the aisle.

In Oakland most folks exit the train and I move up to sit next to Rick to plan our next move. I’m thinking we should just get off, turn around, and go home. Coffee and breakfast at our kitchen table sounds good about now. Rick thinks we should pursue this at SFO. So we screech and rumble on through the tunnel under the bay, which has always given me the creeps, and down the peninsula to SFO. It’s the shortest day of the year, the day the Mayan calendar stops, and there is a hot pink haze burning the sky above Mt. Hamilton to the south. No, the world isn’t ending.  It’s just another day beginning.

Arriving at the American Airlines area, I find an official looking woman in uniform and ask what we should do.  She points to a long line and gives me a card with a phone number on it and says I should call. Now, yesterday I looked at my flight information and noticed I gave my last name twice when I bought my ticket. I called to straighten it out before homeland security straightened me out. I was on hold for an hour and a half. Thank you speaker phone.

We get in line. This is a line of put-off, irate travelers. Maybe they want to concentrate us all in one spot so we don’t contaminate the airport with our angst and frustration bordering on rage. The guy in front of us is there for the second day trying to get to Paris. The guy in front of him is on our flight traveling only to Dallas-Fort Worth. The next flight is Sunday. He doesn’t want to cut two days off his trip and they won’t refund his money. He’s demanding a paid limo home. The guy behind us actually gets through on that number the uniformed lady gave me. So I leave the line to go sit in some comfy chairs and dial the number, myself.

It took awhile to get through and then I was thanked for my patience and put on hold. I was sitting next to an older gentleman who was also on his phone in a conversation peppered liberally with the words “fucking incompetents.” It turns out he was on his second day of travel to some “little town in Northern California” that he couldn’t pronounce, visiting adult children and grand kids, no doubt. I’ve driven to the Oregon border in five and a half hours. I suggested he rent a car… or walk. It would be faster.

While sitting there, I watched a little boy in line just behind my husband, maybe seven years old, put a phone to the side of his head and break down sobbing. The disappointment in the delay to meet someone wrenched his body.  Tears flooded his red, contorted face, he fell to his knees, and his mother dropped to comfort him. They sat there on the floor in line in the airport for at least 10 minutes. The line moved, they both found their feet, but his sobbing continued.

Having finally spoken to someone on the phone and booked on a new flight tomorrow, I joined my husband in line to inform him. But, mainly, I got back in line to comfort this young boy. I wanted him to hear that I was in the same position, that I was disappointed, too, but that we just have to wait, and that it will be OK. It will be OK. Perhaps he was traveling to see a dad he rarely sees. I don’t know. I would have loved to hear this reassurance, that it will be OK, many times when I was a child. But my words were birds that few away. I was no one he knew and my words meant nothing. He remained inconsolable. His disappointment and frustration was painful to watch. It hurts even now as I write this in the comfort of my bear’s nest (my office).  And I find my disappointment nothing compared to his.

Rick and I found our way back onto a BART train bound for home with our neighbor willing to pick us up. We’ll try this again tomorrow.

Copyright by Karen Najarian 12-21-12