The Knot

Okay. We mulled it over and decided to go with the Zeppelin knot instead of the Hangman’s noose. You know the saying….when you’re at the end of your rope, tie a knot in it and hang on for the ride.

Cancer, doctors who tell you that “you should be dead by now” (true story, folks), the immense cost involved even with insurance, incorrect billing by almost every office all take their collective toll. I had a PET scan that was ordered ASAP because of a possible new tumor. The day of, I was told insurance denied the scan because the new doctor failed to send in the paperwork (Don’t confuse that one with the one who told me he hated his job…………Raindrops on roses and whiskers on kittens Bright copper kettles and warm woolen mittens……….. Sorry.) I was quoted $1600 without insurance and had the test. Afterall, when granted a coveted spot on the imaging table and waiting weeks to image a…a thing….just mutating in the control tower of your body….. I know it’s hard for healthy people to understand. Doctors don’t even get it. The best way I can explain it to the everyday, healthy person is to say, “Imagine this: You have your computer that you take with you EVERYWHERE. it has ALL of your contacts names, addresses, phone numbers, birthdates, all your financial information, stock portfolios, broker info, online banking, navigation when you get lost….your whole LIFE is on there. No cell phone (analogy people-work with me here) No cloud exists. You drop your laptop in the pool. Your backup failed. How would you feel? Angry? Helpless? Frustrated? Maybe the need to get in your car and drive like a lunatic to the nearest Apple store to get a new laptop and try to remedy the situation ASAP? Nope. Sorry. When that laptop goes, you enter a world where you have to make do. Glitches? I have those, but mine make me sleepy. :) No memory left? Oh, honey…I’m soo with ya on that! No bits or bytes? Yeah, my appetite waxes and wanes, too, but you get used to it. Welcome to my world! I’m glad to have a friend :)

Though the concerns were troubling, it turned out my original tumor remains a loner. Awwww…NOT! When I finally got the bill it was $4000. More than double that quoted. We called THREE times and they brushed it off saying, “Oh, just pay the $1600 quoted and we’ll zero out the difference. We did. The next three months we received bills for $4000 and a FINAL NOTICE. I had called and informed them of each and every date and time I called, the rep I spoke with, the amount I was told to pay and then I accused them of scamming the sick and elderly who have so many bills coming in they just think they owe it and they will pay or set up payment plans. Haven’t heard from them since.

Then we have Craig’s job that is out of control. They’ve moved everyone, have not hired anybody to handle the increasing workload, they are demanding everyone work 8 am-6 pm PLUS overtime. CJ is having a rough time juggling it all.

There is a whole lot of weight on our shoulders, which is why we chose the Zeppelin knot (completely secure, takes massive strain, yet remains easy to untie when – and only when – wanted.) :) We would wave, but we don’t wanna lose our grip, ya know?? Smiles and air smooches from the swing. XOXO :)

My Reality

I get up. I fall back to bed.
I get up. I stumble.
I speak. I fumble for words that don’t come.
I pray. God hears me.
I follow His light. I find peace. I am strong.
I tire. I sleep. Never enough.
I talk in my sleep. All night long I am told.
I scratch at the sheets, digging my nails in, as if grasping.
I wake to my voice.
I take pills, always watching the clock.
I read. My body is tired. I go to bed and I am the only place I want to be.
My body relaxes, rejoicing in rest.
Guilt consumes me.
I am not this person. I am Jennifer.
I am an active woman who thrives in life.
I need to get up.
My eyes won’t open.
The sky is blue. Life is happening.
I lie in bed.
Get up.
Try.
I pray for strength.
I think of the dishes in the kitchen.
Ashley works and is holding down 16 units at school.
CJ is gone all day at work.
Get up.
I wake to my voice speaking to someone in my dreams.
I jump out of bed, the late afternoon sun shaming me.
Guilt consumes me.
I shuffle to the kitchen, unsure where to start, thoughts scrambled.
I turn to God for strength. I pray for energy and healing.
My prayers are answered as I complete the task and tackle dinner.
Tired.
Hungry, but not.
Nauseous, but not.
Sleep is not an option. Ashley and CJ are due home.
I must be strong.
Pull myself together.
I shower.
Voices. They are home.
With every ounce of effort I have, I pull out that thriving Jennifer and greet my family after their long days with kisses and hugs in a clean kitchen with a warm dinner.
Exhaustion.
My body screams sleep.
Tomorrow, laundry.

UPDATE

A sincere thank you to the Word Press community and staff for taking ownership for the post on my blog. Here is their explanation:

“As Grace mentioned, this was meant as a joke playing off of the song ‘You’re so vain.” It’s a completely automated email that is sent whenever a WordPress.com user likes one of their own posts. I’m really sorry if this email was insulting or discouraging!

We’re taking a look at removing this in the future.”

Lessons at 21 Months Out

How are you? What a thoughtful question. I wish the answer could be a resounding , “I have truly never been better! Thank you for asking”, but as we all know, life throws us curve balls, fast balls, knuckle balls, upper-cuts, right-hooks, left-hooks, round houses, arm bars, and for some, the dreaded guillotine. But wait! There’s still the 1% out there who are so special that we get GBM in the middle of our lives, just when our children try out their wings and fly the nest. Just when you start to think, “Wow! We have actually done a pretty damn good job with these two lives God graced us with.” you start to relax a little bit. But as we all find out sooner than later, those baseballs aren’t going to stay right down the middle forever, and no matter how much bobbing and weaving you do, life is gonna give you a few black eyes.

As I sit here today, 21 months post-diagnosis, there are many things about me that have changed and a lot that I have learned.

1. I’ve heard so many people start to complain about something only to stop and apologize, acknowledging that my problems are significantly worse. The first thing I say to these well-meaning friends is that everybody is individual and significant, including their trials in life. Pre-cancer, my biggest issue was putting my son through college and that was a VERY big concern. My point is, everyone and their life trials are significant regardless of what others are going through. A bit of wisdom: You and your life are not trivial. Not ONE BIT.

2. If you can, you will. “Jen, you’re so strong. I don’t know if I could be so “up” if I had your struggle.” My response to that is: You have loved ones who hurt deeply. You have a CHOICE to be positive and hold onto hope or be negative and give in to misery. Your CHOICE will determine how well they handle the situation as well as how you feel physically. When I am “up” my family is too. If I am not, we are all down. What kind of life is that? There are days when I do fail at the task. There are also people I love dearly who are drowning in misery due to my disease and no matter how much I try to throw them a life vest, I feel myself pulled under with them. By the time I fight to the surface, I am an emotional wreck, full of anxiety, a wide array of physical symptoms attacking my already fragile body. Again, I can be optimistic. I can have hope. I will. It is my CHOICE. Unfortunately, I can only offer grief counseling and hugs and take in the sunshine on their dark days. It is their CHOICE to go, for there is only so much I can do to help. I have to come first if I have a shot at winning this war.

3. And that last sentence leads me to a big change I have experienced in the last 21 months; one I wonder if I should cringe at or embrace. I have changed from a quiet (shush Matt, Scott, Lori, Sonja, Rocklin peeps…) OH, ALRIGHT, THEN! Maybe “quiet” wasn’t the right word. Anyway….I’ve learned to take on doctors and all of their arrogance. If you have been fortunate enough to avoid docs, congrats!!! I, on the other hand have had the opportunity to see well over 30 in the last 21 months between clinic visits, specialist visits, 2 surgeries at 2 different hospitals with rotating staff throughout the weeks, several ICU stays, etc. It all started with my very first Primary Care Provider before cancer (Age-old story that can be found in an earlier post). I do not like to stereotype or label ALL physicians as arrogant just because approximately 14 of the approximately 30 I saw were insanely so. In fact, I ultimately came away with my non-arrogant A-Team until my insurance changed requiring me to get a PCP. Out I went, worn down by 21 months of day-in-day-out symptoms, some old, some new, all terrifying. There I sat in the exam room when this doctor walked in, sat down, opened my chart and without even looking at me, barked, “How long have you had GBM?” I said, almost 21 months. He said, Wow. You’ve lived longer than you’re supposed to.

Yes. You heard me right.

I looked him straight in the eye and mine just blazed with fury. I was getting together all of the things to say to him in my mind when he said, “Who’s your insurance with?” When I answered, he dropped his head, shook it and said in a longgggg, drawn out, sarcastic drawl, “Of courseeeeee it is!!! The insurance company NOBODY wants to work with!” He immediately follows that up with, who was your doctor and how did you find her? At this point I’m only still sitting there to let him know my friend is the last referring doctor and he happens to be world renowned. He stopped me there, looked at me and said, I don’t know him. I don’t care to know him and why would I? That’s not my field and it’s a waste of my time.”

Again. You heard me right.

I was seething. Now old Jen would sit there politely and keep her thoughts to herself. This Jen told him to shut his chart because his interview was over and he didn’t get the job. I told him that I had never come across somebody so rude in my entire life and I had no interest in working with him. He turned bright red and said, “Rude? How is asking questions rude?” I reminded him about the dead comment and he said with a laugh, “What? I can’t share in your joy?” I then went on to explain that out of sheer damned respect, he should walk out of that office and go Google my other doctor’s name. I said, “That man gave me his home phone, cell phone, office phone pager numbers, home and work emails before he ever even met me. He calls me every damned weekend to check on me because he CARES. He loves his patients. He loves his job! That is the definition of a doctor Mr. XXX.

At that point, he pushed back his chair and, I kid you not….he said, You’re right. I hate my job. I’m burnt out. I’ve done it too long. I said, “Yep, it’s GLARINGLY apparent.”

I walked out into the sunshine, took a few deep breaths and silently smiled at the girl who fought for herself and all of the other worn down, tired patients he may treat a bit kinder now. When it comes to my care, it’s all about me, baby! My life depends on it. Check your ego at the damned door!

The Big Apple May Keep The Doctor Away!

Since arriving here in Arizona I’ve been absolutely amazed at how friendly and outgoing people are. I consider myself a very friendly person, but a bit shy and reserved when it comes to actually making plans to go out with new acquaintances. Within the first few weeks of living here, ripping open boxes, unpacking, untaping, unwrapping every item we own, my nails were in serious need of a mani/pedi. I went onto Yelp to find the highest customer rated salon and went there. From the moment I met Sharie, I knew she was my kind of girl ~ I could easily see us hanging out together, going to lunch, happy hour, chatting about anything and everything, and through that wonderful hour and a half of pampering, I left with my first friend here in Arizona.

Since that day, we’ve been to lunch a few times and happy hour with several of her friends, Cindy and Menaz, a few more ladies I now consider lucky to call friends. Several days ago, Sharie and I were enjoying a super fun, Italian lunch at The Parlor and she mentioned that she had airline tickets and wanted to do a girls weekend in New York. She asked if I would be interested and I was so freaking ecstatic by the idea of surrounding myself with my newfound friends, I slammed my hands on the table, practically jumped out of my seat and yelled, “YES!!”, but reality quickly reared its party-pooper head and in the same breath I said, “But, it’s going to take some budgeting, so let me talk to CJ and we’ll plan it!” We toasted to that and went our separate ways, planning to get together one morning next week to go to the stables to watch her beautiul horse run.

Fast forward to last night as I was just drifting off to sleep. Sharie texted me to call her if possible and if not to call today. Worried, I called her right then. Turns out, Menaz just got back from a trip out of the country and Sharie was telling her about our planned trip and asked if she wanted to go. Not only did Menaz want to go, she wanted to take care of the hotel room so I didn’t have to worry about the cost. So now, Sharie has the tickets, Menaz has secured the hotel and I am lying here blown away by the thoughtful, kind gestures of these absolutely amazing ladies. Just as I am thinking about this, Sharie tells me that she was talking to a client of hers about our plan. She happened to let the lady know of my illness and the woman was so touched that when she left, she pressed a $100 bill into her hand and told her to give it to me and to have a wonderful time. <3 I am once again humbled by the kindness of new friends and a perfect stranger I have never met who just heard about my story and wanted to reach out to me. I pray that God gives me the perfect answer in how to express my deepest gratitude ~ I just do not feel that words can express it. <3

Update on The Waiting Game

I updated FB and forgot to update here! My neurooncologist read the radiologist’s report on my MRI and told me “Your MRI is superb!” :) I thank every one of you for your prayers – they are helping!!! God bless us all <3
Jen

Recuperation

Well friends, I’ve hit the wall. I knew it would happen but the party girl in me seems to have been sucked into one of those vacuum-sealed bags while we were packing and got lost in the back of a closet. Once found and unsealed – the attitude of the woman who emerged resembled Kristin Wigg in Bridesmaids (Ready to Parrrrrtayyy!!!) looking for two of her best pals, Rebel Wilson and Melissa McCarthy, aka Susie and Kathy. PUBLIC SERVICE ANNOUNCEMENT: No resemblance at all, though they are all beautiful women. Ya see, Susie has a way with accents that kills me, hence, Rebel. Kathy would give you a look like she’ll cut you if you piss her off but it’s really endearing and leaves me laughing and wondering what I would do without them. One teeny, tiny little problem: Between 5 days in Lake Tahoe followed by a 4-day visit from Kyle and his girlfriend, Marissa, followed by Rebel Wilson and Melissa McCarthy’s visit and starting chemo today, my brain is WAY overstimulated. :( The only way I can explain it is like a hangover with no alcohol involved and the need to sleep lasts all day :( Just stick me back in my vacuum-sealed bag and throw me in the closet till chemo is over, but this time don’t forget me cause I have another one of my best pals to hang with: Jeannie! Her title will be chosen upon departure :)

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