Standing on a road I didn’t plan, wondering how I got to where I am. I want to believe in that still small voice. I want to hear beyond the noise. – Plum, Need You Now
I am in that lovely place that no wants to be in – watching and waiting. You know the place. It’s somewhere between “blown off” and “definitive.” You may or may not have an illness or some other disease. So the doctors call for “watchful waiting.” They test you at regular intervals with the expectation that at the end of a specific period you will have an answer – or not.
I’ve been in the “desert of the unknown” since September 5th. That’s the day I found out that the unreliable CA125 decided to shoot up from a relatively low 8 to 21.4 in 11 short weeks. I say unreliable since it’s affected by inflammation and isn’t the best indicator for some women for recurrence. In case you didn’t realize, EVERYTHING causes inflammation; allergies, stress, sprains, strains, foods. The list goes on and on and on.
When I got my result, the nurse was reassuring. Dr. Downer wasn’t too concerned since my recent CT showed NED (no evidence of disease). He attributed the rise to inflammation. His advice: come in for my regular appointment, retest in 4 weeks and DON’T WORRY. Right.
I saw Dr. Downer this week. If you’ve read this blog for any length of time, you know I LOVE Dr. Downer. He is, in my opinion, the best gynecological oncologist ever. He handles my sarcasm for what it is; a warped sense of humor couched with fear. He gets it. He knows my brain goes into overdrive and races to the bad places that only The Beast can take you. He takes the extra time to answer every question I have, even the stupid ones. He lets me cry, rant, scream, question and run through every other emotion. He also give great hugs. His nickname is sarcastic. When I was in chemo, it seemed that he only gave me bad news, while his PA, who I affectionately refer to here as The Lovely Liz, had good news. It also keeps me out of trouble for mentioning him by name. But I digress.
At my visit, I mentioned that while I knew I might need to bond with Dr. Downer again one day, I just wasn’t quite ready yet. He told me that it would probably happen one day. Ouch! This was after he explained my watch and wait plan. Get labs on 10/1, labs again in November. Any jumps of 3 points or more for 2 consecutive tests mean a PET scan is in order. A huge jump above normal (over 34) gets a PET scan. Otherwise it’s just pesky inflammation causing a blip in the testing.
I have spent a lot of time thinking and worrying. I have a chemo plan set up – in my head anyway. It will be on Wednesdays with my Angel in Blue so I can keep up with co-ops. I have been blessed with an amazing support posse – Coach Cathy, Sista Sue, Other Mom Kelley, Miss Renie, Aunt Denise and Prayer Warrior Linda. These women have been my constant source of encouragement and I love them with an unfailing love. My DH is straddling the line between fantasy and reality. He has to. Balance has to be maintained in our relationship. I have shared the news with Mr. B and the Ultimate Bengal Fan. I hate that they might get sucked back into my private hell. Moms are supposed to keep their kids safe from monsters. How can I protect them from The Beast?
I am withdrawing. My Coach has called me out twice on this. She’s figured out when I put on the happy face. Mom Kelley has wiped away tears when they just won’t stop. There is no oasis in this no man’s land. My tree is no where to be found. I’m like the nomad the Ultimate Bengal Fan is learning about. Nightmares haunt my sleep. Every ache and pain is accompanied by irrational thoughts. Thus my house is less than sparkling.
I wish I was one of those people who forgot about food and cleaned incessantly when stressed. Instead I eat anything that might remotely look like it could be dipped, enhanced or mistaken for chocolate. I spend time playing games on my Kindle. I struggle to write a coherent sentence. I’m scared, but afraid to acknowledge it. If I acknowledge it, it might be real. Let’s face it, reality tends to be overrated.
If you need me, I’ll be chasing my friend NED around no man’s land. I’m the one with a large mocha in one hand and Russian dark chocolate in the other. A girl needs to keep her energy up while jumping to conclusions.