The Holy Doors

 October 21: The Holy Doors, Feeling Blessed

 John 10:9, Jesus is quoted as saying, "I am the gate. Whoever enters through me will be saved."

 Luke 11:9, "And I tell you, ask and you will receive; seek and you will find; knock and the door will be opened to you." 

READER BEWARE, AGAIN, THIS IS A VERY SPIRITUAL REFLECTION, STORY, AND POST

Every morning Eric and I breathe together, which turns into meditation, and ends with a daily reading from a prayer book we each have. This morning was no different, however I was up early and sat in silence. AHHHHH the dreaded silence is usually when the devil sneaks in and delivers fear- but not today. I felt a pull to reflect on my sins. Naturally I'm a walking saint so my list of sins was not long, Ha! Kidding. Seriously, This reflection got me thinking about our trip to Rome 6 years ago. 

The photo at the beginning of this blog was taken on December 24, 2015 at St Peter's Basilica in Rome. It is a picture of the Holy Doors…..open. The Holy doors I walked through........... Now bare with me here...

Going to Rome and attending Christmas Eve mass at St Peter’s was a bucket list item- a dream. In 2015, a number of things fell into place and in non-typical Eric fashion, we made a very impromptu decision to go to Europe and visit our friends for Christmas! We had just a couple weeks to plan our two week vacation!  Dana and I spent hours at a time, with a 6 hour time difference, planning everything. Her famous line was “we can do anything!” So, a trip to Rome for Christmas was on top of the list. The Paris attacks had just occurred and many were trying to deter us from going, deeming it unsafe. But we ignored their pleas. 

With all the research of all the things we could do, wanted to do, and pre planned to do, we somehow overlooked the fact that just ten days before we flew across the Atlantic, Pope Francess had opened the Holy Doors, something that does not happen often.

 The “entrance portal” to St Peters is only open on a year that the pope deems a Holy Year. “A period in which the Roman Catholic Church offers remission from the consequences of sin. This forgiveness is given under certain conditions and Holy years are usually declared approximately every 25 years.”

 In 2015, Pope Francis declared, "The Holy Door will become a Door of Mercy through which anyone who enters will experience the love of God who consoles, pardons, and instills hope.

I began to wonder, how in the world can I deny his plan for me, when he placed me at the Vatican five years before my diagnosis and had me walk through these holy doors by total “coincidence”.  I get it, I am a realistic person, I know every person that walks through those doors will not then be faced with hardship, disease, or despair. I do, however, believe the opposite, those who walk through are saved, forgiven and provided hope. Perhaps, I was called there when the gates were open so that I would know for certain at a time of hardship that I have been given the blessing of mercy and hope.

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Philippians 4:6-7: Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

I believe, again, that there is a purpose for me greater than I can ever imagine. I believe in Jesus Christ and that I will be helaed through the grace and MERCY that has been bestoyed upon me. I ask everyone who follows this Blog and who is a prayer to pray the following with me daily so I can continue to overcome anxiety and let my faith bring me peace.

"Dear Jesus, you are the divine physician and healer; I turn to you in this time of unending troubling thoughts and worries. Comforter of the troubled, calm my (Kates) heart and take away every worrisome thought. I invite you to replace every worry and anxiety with your peace that transcends all understanding.Grant me (Kate) the strength to accept and effectively handle every trial that is from you. All these, I ask in Jesus’ name."

 

October 13- By the numbers, the battle for treatment.

INSURANCE BATTLE 

I have Been getting a lot of questions about where things stand with next treatment......

Reader Beware, I am in the angry stage.  

1 Unique case:

Mine, Let's explain the trickiness in getting treatment. Im considered

“Hybrid” (High grade carcinoid) (Low grade small cell carcinoma) equilling ki67 score of 40

Not exactly small cell (which is ki67 80-90) or neuroendocrine carcinoid (ki67 score below 20)

Tumors are somatostatin positive receptors and illuminate with Dotatate. The medication actually uses the dotatate to target treatment......how can this be bad????? Yet they deny it.

I do not have paraneoplastic syndrome, I am MEN 2 negative, and my tumors are active with ADH expression. All of which separates me from others. 

Started in the Thymus with metastasis to the bones. Most other Nets start in the GI tract, just a couple inches below the thymus but far enough away to be considered "completely different." The Thymus is technically still considered part of the “Forgut” (before the gut). I learned this be reading a lot of research articles…..I hate insurance for making me review statistics again just to form a case. It's simply cruel. 

2 Account representatives:

Yes, 2 personal account reps at Premera that are “making sure” everything gets done.  Right now I feel like all they do is monitor where in the process we are and let us know. Other than that they are not helpful.

3 weeks of waiting:

Dr Olivier sent a script for Lutathera 3.5 weeks ago, and it's been a shit show ever since. 🤔

4 attempted (partially successful) treatments:

Sandostatin, Radiation, Chemo/ Immunotherapy, Immunotherapy- All of which, except radiation, were initially considered “Experimental” and denied for the very same reason- before ultimately  being approved. And yet one reason insurance is denying new medication is because its “experimental” for my diagnosis.🤯

5 denials:

The number of times insurance has denied the Lutathera treatment over these three weeks. 

The initial denial, the peer to peer, the appeal, and after Microsoft VP reached out to have them review it again.  Leaving us with only one option, an Independent Review of the case.  We are told that the reviewer would be well versed on my kind of cancer- unless it's Dr Dimou himself I have to call Bull Shit on that. This person is also paid for by insurance but apparently is not able to look out our specific plan while reviewing the case. We are hoping he is fair and overturns the denial. 😩

6 unpaid bills:

Now, all of a sudden we are getting bills from the local hospital, local labs, and pharmacies saying we owe money. Not sure what is happening since we reached our out of pocket max in February. It's almost as though insurance is just trying to break us, trick us, stress us out to the point we give up. This has never happened in all 10 years with this insurance company. So on top of fighting for treatment we have to fight with them to pay bills from May that have all of a sudden been denied. This is now another ongoing battle with insurance. I really think we got flagged in the system as having been to expensive this year so they are reviewing claims differently. 😠

7 days:

The number of days a week we have had to deal with something Cancer related this month. Well shit, most months since February. 

And are you ready for this……..

120 documents:

Yep, Mayo has provided insurance over 120 documents in support of coverage and use of Lutathera. Which remains to be seen as experimental and denied by 3 separate doctors so far- 3! THREE doctors have denied the treatment plan that an ENTIRE tumor board that included medical oncologists, radiation oncologists, nuclear medicine doctors, interns, surgeons, and more decided was the next best option. How on earth do three doctors that are paid by an insurance company get to play GOD? The company has caused anxiety, anger and stress. They have crushed my spirit, deflated my hope and shaken my faith. Shame on them. 

$54,046.00 per treatment (4 total treatments needed, 1 every other month)

That is the cash price for the medication and totals $216,184 total or $27,023 a month for 8 months. We are working to try and get approved for the free drug program with Novartis but we have initially been denied and have to request an appeal showing gross income and monthly medical expenses. Yeah this is so fun. I mean I love a good spreadsheet but I would take a hard pass on. Disclosure….. insurance informed me that they do not pay for anything related to a denied medication so Any cost associated with treatment will be our responsibility. 💸💰

UNLIMITED ANGER

My therapist says that this is actually a good thing. She's crazy but I love her. It is essential to go through all the stages and if i don't face my anger, I can not process everything. So I am angry! About so many things! Clearly about all of the things I just mentioned but Shit, I am really pissed about so many other things. I'm pissed that I am not working right now, I wish I had my hair, I wish I had so much of what I used to have- like energy, a clear mind, good sleep. I hear things and see things and sometimes just want to explode. My greatest plan that I am working on is to stay the F alive- fight for my life,  and it's difficult beyond expression to listen to others plan their life. I should be working on the next Scerbo family vacation and picking out our excursions, designing our matching tees and pestering Eric about going to Hawaii in 2022 like we had planned for so long. 2022 is Dylan's 18th birthday, his high school graduation, our 20th anniversary, Rylies 16th and Eric’s 45th birthday.  It was the year we were aiming for and instead of planning that I am planning how to get my 5th cancer treatment. It sucks, so I am angry. I've done all the positive things, different breathing techniques, meditation, visualization, warm baths, cold showers, acupuncture, diet changes. Words of reassurance are given to me everyday in my daily prayer book,I see beautiful signs in nature and still I can not help but be angry. I’ve done all the crazy things like practically empty my closet of clothes that reminded me of a life that of a different Kate. Shirts that only looked good with a messy bun or big loose curls- gone. And I guarantee I will be angry again when I start looking for that very shirt and realize I gave it away in rage. I supposed the anger is fueling my soul to continue fighting. 😡

Now before anyone freaks out, I'm not losing it. Im not giving up. I have not lost all faith. I am just really fucking mad and I am allowing myself to feel that because you know what, I am the one with the cancer. Yes, I guess you can say “Cancer Kate” from last year is back. 

Priceless:

Dr Dimou and Dr oliver have provided the independent reviewer a letter, a statement or plea per say, arguing why the treatment should be covered. Dr Oliviers was very heart felt😊  We spoke with Dr Johnson (Nuclear medicine), and he assured us that the team is working around the clock to find a way to get me this medication. He said that even though we have not met, he knows me and knows my case since its discussed almost weekly  at the tumor board and because of Dr Oliviers unwavering  search for answers on my behalf.  Mayo is seeking assistance through grant programs and charity resources to help in any way possible. The support from these doctors is PRICELESS. 

I want to share the last part of Dr Oliviers letter- it warms my heart and reminds me just how very invested he is in my care 

“ Lastly, Ms. Nelson is a young mother in otherwise good health, struggling with a rare malignancy which will never be examined in a phase III trial. She has progressed through several lines of therapy and is running out of good options. The choice of Lutathera is rational, given her high Krenning score, small volume disease, and overall good health. Healthcare is full of waste and high expense care for patients less likely to benefit, but this is NOT the case with Ms. Nelson. She is worthy of investment, and the choice to offer her therapy is rational, ethical, and morally sound. Please immediately provide her with this essential care.”

You love him even more now, dont you!

Other Balls in the air

 We have a call into Duke, yes its not MD Anderson,  they do not have a specific neuroendocrine division, however they are a drivable distance, they are an approved facility for Lutathera and the have ongoing studies. We hope if we can get Duke to suggest the same next treatment then Insurance may be willing to cover it. Hope to hear back from them this week about how soon we can get there for a case review.

We are also drafting letters of medical hardship to argue a case with Novartis  and are doing everything in our power, exhausting all options, to get this treatment.

 

SO there you have it the “update” as of now.