First, a response to the most frequently asked questions.
Many of you have commented to me that you feel awkward or don’t know what to say to me. There is no need to be afraid—I am still me. I am not going to burst into tears if you ask to hug me or mention the word “cancer.” I am not going to break into pieces or anything else. It is OKAY to talk to me even if you just walk by me and whisper “cancer sucks.” Trust me that plays on a 24/7 never-ending loop in my brain. I get it!
Along that same line, I love hearing about all that is going on in your lives. I am as curious as I ever was.
I have been asked why the liver biopsy came back negative and it turned out the PET scan showed 5 malignant lesions in my liver. The liver is a big organ and the biopsy only samples a little bit and mine is complicated by having fatty liver disease. (I am extra special and have a lot of medical problems, you name it.) The PET scan looks around corners and down rabbit holes and finds the suckers lurking and hiding in the shadows.
I have heard comments about having a good game face. Yeah that. Actually my emotions divide into 3 parts at any given time—massive anxiety, deep sadness (mostly about what I am putting my family through) or compartmentalization when I am at work and can hold it at a distance. It is there bubbling away under the surface. I am in the deep end of the pool.
Where do I want to be? Mostly, when I am not at work (where I feel loved and supported), I want to be home with Tim. Why? He is my oxygen. I cannot breathe without him nearby or the promise he will be home soon. Anything that takes me away from him is just not comfortable. (Maybe I will start calling him Blanket, like Michael Jackson’s kid).The anxiety and sadness gets the best of me and I get lost in it. The kids are a close second but hey, they are kids–they have their own needs to be met. Yes, we have devolved into the Dead Woman Walking jokes but that is who we are and how we cope. Too soon? You have time to catch up.
This has been a hard week. A really hard week. Seven weeks in and still having scans and tests and waiting. Endless waiting. Going in circles. I am awake at night thinking about the tumors growing and traveling, moving around, setting up new camp sites. In the beginning it was all a bit, well a lot, unreal. Now the new reality has settled. I have never known a living person with cancer that has spread to other organs that has survived. They have all died, my sister, my friends, every one of them. I guess I gotta widen my circle and get some new cancer friends.
Tuesday night, after a renal scan (4 and 1/2 hour trip with Bridget) I started falling apart over the long wait for things to happen–7 weeks! Once that started it was hard to come back. Long ago, before the winter from hell and the 100 feet of snow, Tim and I booked a trip to Iceland over April vacation. Wes, my boss, made the first comment: “Yeah and I’m going to put a beach chair in my backyard and sit next to a kiddie pool full of ice that sounds so fun.” No Imagination! It was on our bucket list and the time seemed right. Now, we were crushed that it didn’t seem likely to happen— but with everything taking longer than we expected, we started to wonder about going again. The doctors said to wait until after my April 2 appointment to decide whether to cancel–again, prolonged indecision.
Went into work and felt overwhelmed with crushing sadness, cried for a while with my 2 work wives, Shannon and Lisa—no pill for that. Then the NP called to say she had gotten the insurance approval (FINALLY) for the chemo drug I need and she set up blood work and an oncologist appointment right after we meet with the urologist next week to get everything mapped out … things felt like a turn for the better. A plan was taking shape. Breathe!
With that new information Tim took me to Legacy Place for distraction, shopping, eating, and with renewed hope that maybe we would make it to Iceland. Of course I did comment on why we would purchase anything for a dead woman but he said it was retail therapy so I was game. We purchased a wind breaker at LL Bean to keep the high going and the dream alive.
Then the bomb. Friday we learned the insurance company would not approve the chemo drug after all, we were DENIED! Another day, multiple phone calls and the oncology team fighting for me. My NP said the insurance company was hoping I would just give up and pay out-of-pocket. WHAT? Suddenly I feel like Susan Sarandon in Lorenzo’s Oil. How did this happen? I never understood before today why people with cancer had fund raisers and go funds. Now it is all clear to me. It is about money and as Kelsey commented, “blue cross isn’t all that excited about you surviving and costing them more money.” Come Monday, another appeal by the oncology team, another wait. Back to the beginning again.
Friday evening Bridget’s BFFs, Emily and Liz arrived with a basket full of margarita mixes to hang out with the four of us. We spent the evening oohing over Liz’s engagement ring and talking weddings and dresses. Saturday we lunched with Jenny and Brian and Kelsey at Farmer’s Daughter. Bill and Carla are coming later today for brunch. Michelle e-mailed me a hot new book. I am living despite the set backs. “Because when everything is hanging in the balance, a bit of normality is a beautiful thing.”
A word about the travel. My BFF, Jack, says we are spending our inheritance money–we are not. He also thinks I am a hypochondriac–I am not. Come to think of it, he’s usually wrong. Back to where I was—Ever since I was diagnosed with cancer 12 1/2 years ago Tim has made a commitment to me to celebrate every birthday in a big way and to travel as much as possible while we could. That thought has clearly come home to roost but we have traveled and done things we wouldn’t have if this hadn’t happened–the silver lining. My 50th birthday in Jamaica, Puerto Rico, Vancouver British Columbia and Whistler, Paris, London, Spain, Italy, Mexico and our favorite–2 weeks in Santorini last summer. Have to live like you are dying. We are.
We all should live like we’re dying, but most don’t have it thrown in their faces quite so radically. Your blog is amazingly poignant, and you must know your Michigan family prays for you daily, loves you dearly, and will do anything for you. Just wish we weren’t so far away. Keep fighting those insurance bastards! They don’t know you like we do. You are totally worth saving. Also, remember the infamous Lance Armstrong. Stage 4 testicular cancer, and still alive and well. There are success stories – and even miracles.
Love and Hugs, Cathy
LikeLiked by 1 person
Tim and Barb, so nice to hang out with you today and talk about the crappy cancer, the sucky insurance charade and of course mad men, sons of anarchy and our kids! Miss you already and wish we could be there all the time but who knew you are still working, parenting and going to the gym! I wish I had a way to take away the anxiety. If only “living in the moment” and mindfulness were easier in actual practice. But I’m trying to think of this in small steps and will be meditating on BCBS approving what is the obvious right thing to do for you and on positive cancer survival stories! ☀️☀️
LikeLiked by 1 person
Wow. You’re posts are inspirational, real and gritty. Thank you so much for sharing, helps me to know And understand you better. I will keep you in my daily prayers as long as you need me to.
Ps. This cancer is bullshit👎
LikeLiked by 1 person
Keep praying lady!!
Barb, you are really a wonderful writer. Great metaphors, an authentic, engaging voice — you’re a natural. It feels to me that you are giving all us such a gift through your words. I feel privileged to read your posts. I wish you didn’t have to have a recurrence of cancer to have cause to write so that we could hear your writer’s voice — so solid and heartbreaking and funny. But of course, it’s also your actual voice I hear as I read what you write. Walter and I think about you and Tim and the girls each and every day and wish things could be different for you all. Really hope Blue Cross comes through. Insurance companies rate right up there with the Tea Party.
Lots of love from Ipswich —
LikeLiked by 1 person
I agree…live like you are dying! Wanted to let you K ow that I am going to Paris after all. I leave may 21 for the Dominican Republic then Miami for 3 days then ten days in paris. We will head to Portugal half way through and spend 4 days there. You told me to go and see the world and travel and I am and I am excited. I will take lots of pics for you guys. What you said about blanket…I mean Tim haha…really touched me. I love you two’s love. And love his promise he made you!
I am so happy you are going to Paris!!! That is great news. You have to get out there and see the world to find your place in it. That makes me so happy😎
Hello from a fellow traveler, I was struck by your comments about Tim’s importance to your emotional life right now. I, too, have been living with mbc and find that my reliance on my husband’s good kind presence has skyrocketed. I had a strong attachment to one corner of the living room sofa for the first 6 months after dx, also. A major safety zone! I am glad I found your writing, and will enjoy following the blog now. Warmly, Mame
LikeLiked by 1 person