3-24-20: Jell-O Should Not Hurt

I haven’t posted in awhile because I’ve been waiting to feel better before I simply whine all over the page. It’s been a hellish two weeks suffering what I call the torment of the damned. My throat and esophagus were so burnt from the radiation to my spine that I could barely dribble down some water and no food. Rick dutifully collected all my little spoons and bowls of odd soft foods that I’d attempt to eat and then abandon all over the house. Jell-O hurt. Milkshakes hurt. Applesauce hurt. Water hurt. Burps hurt. I told them that radiating someone’s esophagus should be outlawed. I ended up receiving IV hydration at the hospital Monday through Friday last week. The pain was like a hot pipe inserted down my throat all the way to my stomach. It felt like the little chartreuse green radioactive brick that Homer Simpson tossed out his car window on the way home from work at the nuclear power plant ended up in my throat. If my esophagus looks anything like the radiation burns down the center of my back, it would explain why it hurts so bad. The pain keeps me up but before it wakes me I have two favorite moments every night. The first is that delicious fleeting moment upon rising out of sound sleep when I’m barely conscious but there is no pain. The second moment is the one that immediately follows: just before I remember that my body is riddled with cancer.

I’ve been quarantined except for hospital visits for two weeks now. I cannot afford to get Covid-19. Rick has bleached all washable surfaces – counters, door knobs, handles, my car’s steering wheel. IBrance knocks down white blood cells and red cells leaving my immune system weakened. This mountain woman has rarely thought of herself as fragile. Alas, I am only human and this mortal flesh is getting heavily bombarded in the name of extending my life. I’m currently on my second ten-day stretch of radiation, this time where the tip of my hip screw is screwed into a cancerous chunk of bone in my pelvis and an especially painful lower right couple of ribs. They’ve assured me that the beam through the hip is not hitting any painful internal organs and the zapping of the ribs is a tangential glancing blow across the bow. I keep trying to remember that I’m investing in my future – a future where I can play with my grand babies, watch them grow and become their own unique people, and witness my children’s pride; a future where I sit by a mountain lake sharing a meal with friends; or sit in the sand by our cove in Mexico sipping a Margarita with Julie and Marty.

The radiation has left me exhausted. I can walk about 20 steps. I walk to the kitchen and put my head on the counter. I walk to the living room and toss myself onto the couch. I nap three times a day. Where is that woman pushing her way up Lucy’s Foot Pass in Kings Canyon last August? The danger in being a Clinical Lab Scientist (married to a PhD in Biochemistry) is that I know a lot of things that can go wrong and I pester my doctor about all my hunches to explain things. Thinking the exhaustion is due to frying my thyroid while zapping my spine, I had a TSH done. No, it’s fine. Thinking my red cells got too low, I had a CBC done. No, my hemoglobin’s an 11, fine. Crap. I guess I just have to weather this.

So, bottom line: I’m now able to eat some and drink, although it’s still an effort and a fight against pain. I nap my day away and wonder if this is my new normal. On a stormy ever changing sea, I’m trying to see what this journey ahead will be like and I get worried that this is it. With the preciousness of life never more evident, I feel like I’m wasting it.

But, one thing’s for certain, the cards and texts, flowers, calls, emails, and even homemade cookies! have sustained me and put a smile on my face. Thank you all. Banning and Regina, and others, are shopping for us. People are supporting Rick in ways that I don’t even know. And Rick has been there from badgering me to drink to holding the bucket when I lose it. I could not have done this alone. And even as the stock market crashes, what’s really important has never been more evident.

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.