Kate’s Prayer

I wanted to share a piece of Kate from her last few days…that I have been reflecting on the past couple weeks and especially during this holy week that has led us to Easter Sunday.

On March 15th, after the first of a few extremely exhausting and tormenting nights for Kate, post-op in the hospital, a few days after getting her adrenal glands removed...  I needed to start staying overnight with her - trying to help her get or stay comfortable, be her 24/7 advocate with the nurses and Drs  and most importantly, just be with her, near her, so she was constantly reminded that she wasn't alone, that nobody was giving up… Not me, not the kids, not her family, not her friends and not the Doctors or nurses… She needed every rope pulling in the same direction to trust that she could get through the mental and physical agony of what she was enduring in those last weeks… and more specifically that night - what she began to consider a torture chamber of a hospital room… it was an extremely small in-patient room and she felt it was closing in on her more and more with each passing day that she had to remain hospitalized.  

That night the Nurses and Dr.’s noticed some light bleeding/oozing around her surgical wounds, her blood levels indicated she would require some urgent transfusions throughout the night to help increase her platelets and hemoglobin blood counts.  She was alone, in a lot of pain and was getting worried about her critical blood levels again… everyday there were constant battles and what we called, sucker punches, that were gut wrenching, fear and axiety provoking reminders all around her of how serious and frightening her situation was becoming, but this night in particular, the mounting circumstances were trying to push her to a breaking point… she couldn’t get any sleep from 11pm to about 6:30am and her lack of sleep was only intensifying the very difficult circumstances we were facing each day.

So the following night, (after I received permission to remain with her overnight) we were awakened by a nurse who was instructed to give Kate another round of platelet transfusions… Several minutes later, as she tried to stay calm, mentally and spiritually strong - she just started saying something that I thought was a short simple prayer she heard or learned somewhere recently.  She started saying this aloud a few times:

"Jesus Restore My Soul;

Holy Spirit take Control"

I said, “Wow, I haven’t heard that before; I really like that.”  I asked her where she learned it and she replied, "myself"… "I just made it up".  I said, "Wow Kate! Really, right now?!? I really like that."  It was perfect for the situation - simple, short, yet so powerful

She was half awake, in so much angst and trying to quell the the physical, mental and emotional turmoil that has been surging the past couple of weeks, but even more so with each passing day.  She was in an on-and-off again meditative and frightened, anxious state…But, from that point forward, we used that simple yet powerful prayer to help us through the next 8 days, as she continued to fight so damn hard for her life against the array of complications from the cancer that were trying to ravage her body. While at the same time, she had to begin to contend with the increasing possibility that her remaining time here with us wasn't long.  

 

I will always refer to this as, "Kate's Prayer" and use it at times when I need God's solace, his consolation, protection, strength… when I need to feel his love, his grace, his embrace.  Not only is it a poignant reminder that the Lord is our Shepherd (Psalm 23) and to come to him when we are weary (Matthew 11:28) … but it’s also a strong reflection of strength and faith… through all of Kate's overwhelming burdens and intense suffering, at those times where she was most afraid - she still held onto an unbreakable hope and trust… and she persevered by her faith that God, Jesus, the Holy Spirit would grant her healing, rest and peace according to his will that would be done.  And through his unending, love, grace, his divine mercy - he granted her rest, peace and healing for all of eternity in paradise with him.

Let this be a vivid reminder of Kate's strength, her pillar was her hope and faith, while staring down the face of fear - that if she can do this at the toughest of times - then we are all capable of trusting God - opening our hearts to Jesus and his endless love, grace and mercy. 

Amen!

Lutathera #2, 1 year into chapter 2

“Worrying is like a rocking chair, it gives you something to do but it doesn’t get you anywhere.”  -Van Wilder

So I've mentioned a few times about God's timing, and I just have to mention it again. On December 22, a couple hours after the family arrived for our Sandbridge Christmas,  we got a call from Rylie’s school that she had tested positive for COVID, and I (as well as Eric) subsequently also tested positive.  I called Mayo right away to let them know.  I glanced at the calendar and realized that I was still over two weeks out from next treatment so I “knew” it would not interfere. About an hour later the 507 area code showed up on my phone.  “Good afternoon Mrs. Nelson”, it was the oncology office. “We got your message, and Mayo actually requires 21 days from a positive test before treatment.”  ENTER PANIC! “Good news is that your treatment is scheduled for exactly 22 days from today, Merry Christmas!” WOW!!! What are the odds, right! Yeah it sucked to have COVID over Christmas but how great was that timing. Had we waited even 1 day to get tested the treatment could have been pushed back two weeks. 

Why 2 weeks, because the therapy has to be given within X amount of hours of receiving it from the manufacturer because it loses potency over the course of hours past administration time.  And it takes two weeks to order, process, make, and ship the medication. So if the process was already started they would have had to discard the treatment.  Additionally, the clinic had already been working with Noartis to have the medication ready on time without a 2022 Insurance benefits denial. Which in and of itself is another story.

SO YEAH! No delay in treatment. While on the phone with them, they informed me that they would be doing remote monitoring over the three weeks prior to treatment. The next day a huge box showed up on my doorstep, although I had wished it was some amazing Christmas gift from Mayo, it was the monitoring system and included a tablet, thermometer, pulse oximeter, blood pressure machine, and a scale. Just what every girl dreams of over the holidays, a scale. Twice a day, I had to answer a symptom screening questionnaire and record my vital signs. If there was any change I would get a call, if I missed a check in, I would get a call, it was actually pretty annoying and comforting all at the same time. (Let me tell you by day 14 I was over it…. Every morning at 8am the tablet would say “Good Morning it is now time to record your vital signs.” )

On Christmas eve my local oncologist called to inform me that he had spoken to Mayo and they all thought it would be a good idea if I went to the ER and got the monoclonal antibody therapy to avoid any Covid complications. Before heading over there I had Dr Franzman verify that it did not contain Polysorabte 80. He spoke to the hospital pharmacist and assured me that one of the treatments did and one was preservative free-  So off I went to the ER. It did not take them long to get me out of the waiting room once they realized I was a COVID-19 positive radioactive Cancer patient! LOL, but just because they moved me out of the waiting room did not mean I got seen faster. I was put in a holding “room” or as I like to say, a closet! That's right, alone in a closet on Christmas eve! Good Times. It was the perfect scenario for an anxiety attack. 5-6 hours later, I left untreated because as it turns out ALL COVID treatment options contain Polysorbate 80. I was stable, had a “clear” chest X-ray and no fever.  They offered plasma therapy but after weighing risks vs benefits and not wanting to stay for a 24 hour monitoring period post infusion, I decided to just go home.    

Christmas and New Years came and went and I survived. Not without a lot of PTSD, but nonetheless, I survived. A combination of seasonal body memories, Covid, and the anticipation of the second treatment had me very anxious. I cried a lot the weeks leading up to our trip. The Fear was paralyzing, the anxiety was suffocating and the worrying had me sleepless. Over the course of ten days- a day did not go by without waking up in panic, and a day didn’t go by without shedding a tear. It’s amazing how you can have so much faith and when just the slightest fear or doubt creeps in - all of a sudden you have to search deep in your soul to find that faith. Does that make you human or an imposter? I have to remind myself: Faith over Fear!

Fortunately, overall, everything went well this time around. There was no airport vomiting and my sodium handled the treatment with just a small hyponatremic episode. The days prior to treatment consisted of routine labs (not including a covid test this time since I had covid within 90 days) and appointments with nuclear medicine, oncology and my new interventional oncologist, Dr Stacy. She is great, and has played a big role in alternative/complementary therapies as well as supplements and cannabis. I couldn't believe we spent so much time talking about getting high! Kidding, but we did spend a lot of time talking about the benefits of THC and CBD- super interesting.

Dr. Dimou remains optimistic and hopeful- two traits every oncologist should possess. He was concerned about a new symptom of spinal nerve pain I had been experiencing since getting Covid, so he ordered an MRI of my cervical spine to rule out MS secondary to immunotherapy which was scheduled for the day after Lutathera. My sodium had been stable for the 8.5 weeks since treatment, and I was pain free for about 7.5 weeks- all positive signs. 

Lutathera went well, as I said, way better than the first time. However, despite having a great plan in place there were some hiccups with my sodium and when, or even if, to admit me. My levels dropped about 7- 8 points in just over 24 hours but only 4 points after treatment and I was not symptomatic— because I was medicated differently and had great control of my nausea. There was a break in the communication line somewhere and the endocrinology fellow was being difficult, which added a lot of unnecessary stress. Luckily, Dr Natt was checking on me from the airport in Europe and between her and Dr. Dimou, I was ultimately admitted for 24 hour observation. I remained asymptomatic (thank God), sodium rebounded up to 136 and I was discharged after my MRI. It was now Friday afternoon and it had been a very long 48 hours between appointments, therapy, and hospital admission. Immediately following discharge, I had my Sandostatin injection- by 4pm I was ready to get back to the hotel and relax. I continued to remain well over the weekend and we were able to return home Monday as planned. 

My MRI results were reviewed with Dr Dimou over the phone and there appears to be some questionable demyelination at C7. The radiologist is unable to clearly decipher the significance of the findings because of “motion”- apparently I swallow a lot. At this point in time all this means is that Dr Dimou will be investigating this further when we go back in March. He has spoken to a neurologist and we will be getting more MRIs (of brain & Thoracic spine) as well as a possible spinal tap next month. The electrical nerve pains have subsided which is really positive news. Since returning home, I have been able to decrease my NaCl tablets down from 1 gram three times a day to 1 gram twice a day and my sodium remains around 136. The pain is starting to go away again, but I have some residual pain from what returned prior to the second treatment. 

Although I have gotten the green light to hit Mary Jane, I have not yet…. Maybe soon. In the mean time I am taking turkey tail mushroom capsules (watch fantastic fungi on Netflix), milk thistle (for detox) and something else for immune system…. To keep my platelets up. I wish I could get all I need from diet but I just can’t right now. I have stopped eating meat in August or September (although I cheated once or twice) and my hands are improved. I am still seeing my therapist who recently explained why writing this blog is helpful to me. (Im going to screw up explaining this but it’s something about taking the experience and moving it from left brain to right brain and then through typing it bringing it to prefrontal cortex where it can be filled away. I always feel better after I take the time to put my feelings and experience into words, now I know why!) Today I started back at acupuncture and have finally had energy to get back in the pool! I am not crying as much as I was in January but as we approach the end of this week and next week I feel the anxiety creeping in again. February 4, 2021 is when my sodium dropped again and we knew the cancer had returned. February 7 (the worst day of my life) is when I had to tell the kids. And For two years in a row, 364 days apart Eric and I were flying out to Mayo (February 12, 2020 and February 11, 2021) because of this cancer. It’s the anticipation is another round of PTSD about to implode. It’s just a lot. I try to think of all the things worrying can accomplish- and I always come up with the same answer- nothing! So why can’t I stop worrying? I am choosing to focus on all that we did this year and appreciate and remember the importance of living despite being told you won’t. I wasn’t given much hope at first when the cancer came back, it was actually the exact opposite. I managed to do a lot, including running a half marathon, watching D and Rylie do the things they love, visit with family, hang with friends, watch sun rises and sunsets, and grow closer to God. This year and I have treasured every moment.

**** side note, I should add that I will never forget something else from that week last year, in my daily prayer book On Feb 8, the verse Matthew 17:20, gave me Great hope In the hospital and I refer back to it all the time!

Ok, now for that good news I said stay tuned for in my last official post! By this time I know anyone reading this already knows, but for my purpose of journaling I want to include some Good “C” words (I have a previous post about all the bad “C” words). Dylan has made a decision for college! He will be serving our Country while attending the US Coast Guard Academy in Connecticut and has committed to play collegiate baseball. He has worked very hard and he is super excited. Today was signing day at his High School! 

Rylie doesn’t have any C words but she does have her permit now!!! She needs a lot of practice driving and we are to the point of having to draw stars to see he will take her. Even Dylan had to see for himself just how bed of a driver she is. He thought we were exaggerating…we were not! Please pray for us to be safe while she learns how to drive. Seriously.

National Signing Day at Kellam HS

Last Kellam HS Swim meet and Senior Night

Be Still and Know

 Walk in peace with the Lord. Seems so simple, seems like words we hear in scripture. But today I realized what that means, what it looks like, what it feels like. As I was doing my daily breathing and meditation my mind went directly to this beautiful valley and I was walking hand in hand with Jesus. There was nothing around , like an open corn field, but the light was beautiful- as if it was “golden hour”. All of a sudden I looked toward Jesus and said “this must be what peace is.”( It was the most powerful words I had ever said.) But  I can see it- how can one see peace? I thought peace was a feeling. SO I asked Jesus to come with me to visualize peace in my body. A place where cancer can not thrive. I went to do my intentional body scan, as I usually do during my first round of breathing,  when my mind, maybe my spirit, shifted and there was no need to scan my body and "remove" all cancer cells. There was just peace. I saw peace in my mind and body and It was beautiful.  I began to wonder how else peace can be seen and what  it looks like. To me, It looked like being cancer free, being at all my children's life moments, growing old with Eric, and appreciating the beauty of the world around me. It looked like the complete opposite of fear and anxiety.  It  seemed so perfect.  Entering my second round of breath and meditation was even more powerful, and as I proceeded with  my third round, I had tears roll down my face. Once you can just be still, it is easy to see peace. Be still and know (Psalms 46:10). 
I always have instrumental music playing in the background during morning meditation. Today I chose to play music from my Hallow app and just as I finished, a song with lyrics came on “Holy God we praise thy name”--- I had to laugh, ok maybe cry, at the irony of my peace experiene for ten minutes concluding with lyrics. It is evident that Jesus is walking with me. It has been since our very first trip to Mayo in Feb 2020. But let's be real, it's not easy to remember. Today I was reminded of his plan and how perfectly he times everything for us. Imagine if things worked out the way I wanted them too. Imagine if insurance immediately covered Lutathera.I would be getting treatment around Christmas and not spending the time with my family. The timing allowed me to have 4 weeks to create space in my world and REALLY allow Jesus to start HIS healing. And now, as we await the birth of Jesus and celebrate Christmas, I am finding a greater peace. 

MERRY CHRISTMAS.

(It all made perfect sense in my soul this am, but very difficult to clearly express in words)

Post Treatment Update

"Theres a difference between living and living well" George Straight

I'm sure the news that about 24 hours after my last post I ended up in the hospital is not shocking. Ugh. What a nightmare. Bare with me as I try to paint you the picture of what it’s like to be radioactive while hyponatremic. As stated in my post immediately following the infusion, I did not feel great going into the treatment and certainly did not feel well during the treatment so I was not surprised that I continued to feel poorly in the days following. However, I was uncertain if it was the treatment or my sodium that was making me so miserable until it was too late. The nausea worsened, the dry heaving started and the headache was unbearable. I was able to get a sodium check that morning and had dropped from 134-131 so i knew I was trending down. As the day went on, Eric knew that something was not right. The nausea was unresolved with medication and instead of just dry heaving I was actually throwing up…. other than getting me to the ER, there was nothing he could do. We put a message into Dr. Natt but the situation was escalating too rapidly to wait for a return call.

The ER visit was terrible. Given the complexity of the situation, treating me was not cut and dry and Eric and I were getting push back on what we knew needed to be done. In the eyes of the ER medical staff we were know it alls, declining treatment they wanted to provide.

Brianna was most certainly missed (the NP at home that helps with my admissions and knows everything there is to know about my diagnosis). So many things needed to be explained, electronic medical records just do not give enough explanation. Naturally they wanted to start fluids, but that would have made me worse…..Eric practically ended up being the “ordering provider” dictating what needed to be done and who needed to be consulted. 

What made the situation even more difficult was that Eric could not hold my hand, help me while throwing up, or get anywhere near me while I was vomiting. I was radioactive and my vomit contained radioactive material. We even had to have the nurses call Hazmat to figure out what to do with contaminated basins. Amidst all the drama, Dr Natt had received our messages and called the ER- between her call and Eric’s “orders”, we eventually got Endocrinology on board and things started to settle down. Turned out I had some fluid on my brain (cerebral edema) and that was causing the massive headache, and My sodium had dropped two more points. We do not know then, nor do we know now, whether that caused the vomiting or the vomiting and SIADH caused the swelling. There are still a lot of unknowns about the entire situation, and a great deal of speculations, but long story short- I did stabilize with one extra dose of Tolvaptan and in 24 hours my cerebral edema was resolved. We are hopefull that the episode could be an immediate effect of Lutathera working.

While hospitalized, my team all showed up. The cheerleader (Dr. Olivier) came by for a social visit.....Seriously. LOL. He came over to the hospital and sat on my bed for about 30 minutes and we just chatted about life and had some really great laughs. I learned that his downfall is picking out AirBNB's. Dr Natt called multiple times to check in and make sure we did not need anything. Dr. Dimou even came up to personally check on me. He had a very different look on his face when he was talking with us, you could see he felt terrible that I had ended up in the hospital. He  said something neither Eric nor I will ever forget, it was very intentional and heartfelt, “We have to do better for you next time.” (insert right hand placed on my heart)

I was able to be discharged two days later…...on a Friday afternoon! So, we had to extend our stay until Tuesday so that we could have all our follow up appointments on Monday. We had a great appointment with Dr Natt and established a well laid out plan for the next treatment which is scheduled for January 13.  Dr Natt will be out of the country for that visit so she has met with the endocrinologist and fellow who will be on call the week I am there. She does not want to leave any stone unturned. We have a very clear care plan in place from the day I arrive in MN until two days after treatment. Now we just have to pray that Novartis continues to pay for the treatment. It was approved for THE year not A year, so we are back to going through the process of free drug approval. Additionally, we are going at it with insurance as they have now decided to no longer cover Tolvaptan.

Five days after returning home it was time to head to Tampa for my appointment at Moffitt Cancer Center with Dr Strosberg- the Lutathera “expert”. All I have to say about that is we had a great visit with my sister and her family and Eric and I feel evermore confident that we have the BEST possible care team at Mayo. 

Our Thanksgiving was just that- a day of giving thanks for all things good! We enjoyed the day out on the water with the Keyser crew. We saw Dolphins, Sea Turtles, Manattes and a beautiful sunset. And now it’s December, again. Again, I wonder where did the year go? It is a bag of mixed emotions to think that all this shit started two years ago. It really is a difficult thing to explain. Part of me is so relieved I've made it through so much in two years and still going strong and a part of me is scared to death that whatever “timeline” I may have is now two years shorter.I don't care how much faith or hope you have, this is just something that I can not control.I have been showered with cards from so many people over the last month. Thank you to everyone who continues to pray for my family and I. This has been a long road and to see that so many are still standing by me is amazing. I have been utilizing breathing techniques and prayer to get me through rough moments and both have been beneficial.  I continue to pray for the strength and ability to keep living and not just staying alive. 

Also, stay tuned for some really exciting, much needed, good news coming up in the next update and I hope everyone has a super Christmas!

 

Lutathera #1

 Nothing is impossible, the word itself says “I’m Possible” Audrey Hepburn

After a month of fighting with insurance and pleading with Novartis, Lutathera was started yesterday. It was a real win to be able to get this medication for free and to have insurance pay for all expenses associated with it. It turns out this is something that neither Duke nor Mayo has ever had happen. Amidst the fighting, Eric and I decided it would be best to exhaust every possible option.Before hearing from Novartis we had scheduled an appointment with a doctor at Duke who has a lot of experience with the treatment. About 2 weeks ago we drove down to NC and met with the doctor. His initial reaction to meeting us was “what do you think I can do, you are coming from MAYO” Ha! I think he was flattered that we came from Mayo to talk to him. He specializes in GI tumors so did not know much about Thymic Cancer but really, who does?? He was even more shocked that I was able to get the medication covered by the drug company, stating that he has never been able to do that.  Anyway, he was helpful, optimistic and reviewed a number of different options all of which lined up with Dr Dimous. And he did agree that Lutathera may be beneficial and is worth a shot- so our mission was completed. We wanted to get another research education facility to recommend the med and he did- we can put that in our back pocket for now use it if insurance causes any more problems. Additionally, I was able to find the physician who studied Lutaherea during phase three drug study. He practices at Moffitt Cancer Center in Tampa, FL. I reached out to his team who was very interested in my case and had my sister follow that phone call up with a visit to his office. YUP that's right, she drove to Tampa and delivered some medical records to his staff. After a little ‘boo hooing’ she convinced the nurse to get the records to Dr Strosburg. When they called me back, you would not believe the first available appointment he had…….November 24, the day before Thanksgiving. If it were anywhere else this would seem impossible but instead- it gave us a reason to go to my sisters for the Holiday. I can not wait to get his thoughts on the medication and nuclear medicine treatments. 

Eric and I arrived in Minnesota Sunday evening. It was an eventful trip this time, with my sodium dropping mid flight. I ended up doing the dry heaving nastiness in the middle of the Atlanta airport. And as Murphys law would have it, we ended up checking our bags at the gate in Norfolk to go directly to Rochester so I did not have my lasix or anti nausea with me. In order to try and get some of the fluid off I did what I had too—- look like a crack addict ——and nibble off a little piece of an extra tolvaptan pill and double up on NaCl tablets, and down some salty french fries (which I will admit was a bonus!) I started feeling better and releasing fluid just before having to board the next flight. Monday was Prep Day. The alarm went off real early after a long day of travel. Appointments started at 7:15 with a covid test, then CT of chest abdomen and pelvis at 7:30, blood work at 10 and later that afternoon was medical oncology consult and lastly Nuclear medicine consult. 

First up, the results. Well I'm not pregnant and I don't have Covid. SO that's a start. As every scan, this one does show some progression and some improvement. The newest tumor (and the reason we ordered the CT) is in my left rib and explains the pain I've had for 2 weeks. I suggested we just take the rib out, I mean after all God took one of Adam's ribs! I did get Dr Dimou to laugh a little at that, but regretfully he rejected my proposal. All in all he feels we are in a much better place than we were in March and April and was excited that we would be starting Lutathera! We decided to reinitiate Sandostatin, the very first medication used to help with tumor activity. Studies have shown increased efficacy of Lutathera when used in combination with Sandostatin. This will be given IM every month we are not in Many and the day after treatment in the months we are at Mayo. The “first” one will be today at 3pm. Pending Insurance approval. What they once covered in February without any authorization is now being denied!!! Here we go again. At the end of the appointment Dr Dimou made me laugh when he sounded as if he was about to start singing imagine dragons “radioactive”! It was very entertaining.

The consultation with Nuc Med was interesting to say the least. I had shared a link on a prior post (September 23) that talks about how the medication works and Monkia also shared it on facebook, so I won't bore you with the details. Monday night we met Lori and Jason out for dinner. We had a great time, some good laughs but we missed seeing her amazing kiddos. 

Tuesday was showtime! YIKES. The treatment took place in a hospital room and for starters the bathroom was lined with plastic and resembled a crime scene. So bizzare. Eric was able to stay with me during the prep (which was shortened because I was unable to get one of the nausea meds because of my allergy) and for the first thirty minutes of amino acid infusion and then had to leave when the radiative box entered the room and was not allowed back until completion of treatment. There was an episode of vomiting following the initiation of Lutathera but that subsided after some IV compazine and the rest is a blur since that knocked me on my ass and I slept almost the rest of the time. I say almost because I was able to order free meals during treatment so, to save a buck on meals later, I ordered hospital food for breakfast and lunch. 😂. I finished up around 3 with a sodium check which was, to no surprise because of fluids, low at 134. 

Before we even returned to the room, the strict precautions were- well-sad. After a very draining day I walked out of treatment and was not even able to hug Eric. It was official, I was radioactive and even had a membership card to prove it. Poor Eric had to sleep on the couch and will remain there for the next two nights. We needed a bigger room so we could maintain distance while he worked all day and I recovered, but none of the larger rooms came with double beds. We have to keep our toiletries, soaps, towels, drinks, food and clothes seperated. I have to rinse the shower out after every shower, let the water run after every hand wash, and double flush with the lid closed after using the toilet. As most women in their 40s, sneezing and not wetting myself has been a challenge but so far so good. If that happens there are a whole other level of precautions. If I get blood or vomit on any article of clothing, bedding or towels it has to be sealed in a bag for 60 days before it can be thrown away- yes thrown away, not even washed. The rules are crazy. After this evening I can be closer to Eric when we eat or pass by each other but must remain separated for sleeping and prolonged periods of time. We can not fly home until Friday so that I do not expose anyone at the airport gates or anyone I sit close to with radiation. I'm thinking it's time Eric gets his pilot licenses- that would simplify everything. 😦Kidding. After Friday the precautions loosen up and by day 7 I can resume normalcy. The doctor did say that I can swim on Monday which is safe for everyone unless I pee in the pool. HA! I'm looking forward to that. Its been one thing after another and with tumors in both hips and sacrum my goal of really getting back to running has been put on hold. Let me be clear, it has NOT BEEN CANCELLED. I will get back out there one day but in the meantime I just have to make do. 

My sister did post on FB about the prayer to Carlo Acutis, I will share below. 

Also, my friend Erica was able to get in touch with Franklin Grahams team. He is the son of Billy Graham and is here at Mayo right now. She asked his team to please pray for me and would you believe it, they responded. I will share that communication below as well. Again, thank you for every single prayer, thought, blessing, card, message, everything. Things are going to improve, I just know it. Miracles are going to happen. Love to all. 

https://www.padrepiodapietrelcina.com/en/prayer-carlo-acutis-ask-miracle-intercession/

From my friend Erica to Franklin Graham 

Hi! I know this is a bold

request. But, my dear friend

is at Mayo Clinic in the fight

of her life right now with a

rare neuroendocrine cancer.

I know Mr. Graham is there

recovering. If your team can

speak her name and pray

for her, I would be so

indebted. Your work is

amazing and I feel like I had

to ask.

She is a nurse practitioner

herself, a lover of Jesus,

and a mom of two beautiful

kids.

Please pray over her name.

Kate Scerbo Nelson

Thank you for spreading the

love of Christ.

His teams response……. 

Thank you for sharing this

with us. We are so sorry to

hear about this situation.

We are praying right now for

your friend at the Mayo

Clinic. We are praying for

Kate's health and that

God's comfort would

surround her.

God bless you both.

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.