March 30: Let the fun begin

I started this blog to keep family and friends up to date. I didn't want to use social media like Facebook because this cancer is not “who I am” or who I will be defined as in the future. Its not that I am ashamed or embarrassed about having cancer I just didn't feel like this was something I wanted “joe shmo” to know..... we all know that person.... the one who likes to know things just to know things and be the one to tell everyone else. Ha!  And then there is the connotation of making such an “announcement” on FB.... you know what they say..... its not official until its facebook official! 🤦🏻‍♀️. Who needs Social media anyway...I am in awe of how many people have reached out just through word of mouth! Thank you.
Well, as times has gone on I realized writing  this is actually therapeutic for me. Its become a way to get all the balls we are juggling in one spot and helps make what can be so overwhelming seem not so bad. The hardest part with online blogging away from home is doing it on an iphone. See what happened there, that was my way of finding an excuse for any grammar errors💁🏻‍♀️

Friday afternoon we heard that insurance did not approve the proton radiation despite a peer to peer so we move onto an appeal which Dr Oliver is working on right now. The denial is super frustrating but we are not laying down and taking it. To be clear, it was denied by AIM, a company hired by Premera BCBS (our insurance company) to do prior authorizations. Friday night I took to Premera’s Facebook page (ok ok so sometimes we do need social media 😛)...... and in about an hour they responded asking me to send them my contact number and thirty minutes later they called (at 7pm CT on a Friday). We chatted for about an hour- most of the time it was me holding them hostage on the phone until I politely told them everything they needed to hear. And by politely I mean..... well everyone knows me well enough to know what I mean.....

“ I am appalled that you would go against the recommendation of an oncologist at the world’s #1 hospital and deny proton radiation treatment to treat a very rare and aggressive malignant carcinoma. I am a 41 year old mom of two kids with my whole life ahead of me. Proton therapy will help prolong my life, protect the vital organ adjacent to radiation which is my heart, lungs and breasts and dramatically reduce the risk of future malignancies. Shame on you.”

I expressed very clearly my concerns with having one of their medical specialists review the appeal. You see when we couldn't find a cause of my SIADH at home I utilized a benefit we have with Premera and had an expert medical doctor review all my labs, hospital records and images and give us his expert opinion on diagnosis plan and treatment.  I was assigned a nephrologist at Harvard Medical and his plan was- continue NaCl tabs, eat more protein and monitor sodium levels. He was more concerned with wondering if I was vegan rather than investigating deeper!


Eric too was proactive emailing top executives at Microsoft. Their response was even faster than Premera! Surprising for such a huge company. By the end of the day he heard from the Executive VP of HR, who engaged the GM of global benefits and the SR director of global health and wellness benefits. We are hopping that with Microsoft and Premera being actively involved now that the appeal process will be expedited and we will have more info by mid week. 🙏🏻🙏🏻🙏🏻

 If the radiation they want to do here is not covered we will head home and get conventional radiation.  As much as I would LOVE to be home I am terrified of the affects conventional radiation will have on my heart.  (With conventional radiation we run a great risk of affecting my heart because the tumor they removed was attached to the protective barrier of my heart and thats the site if radiation).

The weekend was, well boring! We went for a couple walks but pretty much everything is closed down until mid April. I did get a couple deliveries this weekend which was super exciting and helped pass the time! My friend Brooke send me an echo dot so I can have music 🎼 playing. When i got it up and running the first song “alexa” played was Three Little Birds  “every little thing is gonna be alright”...... Hoping thats a sign from the music gods. Im so blessed to have so many friends and family wanting to make this easier on us.

We have a busy week!! Today is chemo for dummies day...... ie chemotherapy education appointment with oncology nurse. And in all honesty i do hope its dumbed down a little. Ive learned that this is not as “scary” when people tall to me like a patient and not a NP.  I have always tried to explain things to my patients in words that make sense.  Looks like  I was onto something!  Plus it saves me the energy to have to remeber everything and explain it to Eric. Tomorrow starts round 1A followed by 1B and 1C..... good times! Never thought I would be excited to undergo chemo- funny how your mindset changes when you have no other option. I love a good challenge and I am ready to take this on full steam and get it the hell over with!

********AS OF 10:30CT TODAY INSURANCE HAS COVERED PROTON RADIATION***********
We will be staying in MN for about the next month. I have an address if anyone wants to be my pen pal!

View from our room of Mayo Clinic and attached hotels 

Two of the main buildings on Campus 

The one with all the C’s

I remember years ago hearing about how we should stay away from words that start with the letter “C” ie cookies, candy, chips, caffeine, cigarettes, etc. I have to laugh about all the “C” words I have floating around now Corona, cancer, chemo, CT scans, canceled school, closures. Its a shame the world doesn't spell quarantine like I think it should be spelled......With a C!

C is for Corona and Closed The whole world is dealing with corona and all its implications, so I am trying to keep that in perspective but damn, its hard to deal with when you are hotel living. MN governor has implicated the stay at home order which has almost instantly closed even more restaurants leaving three in walking distance that are now offering limited hours with and an abbreviated carry out menu. Luckily we were able to leave our standard hotel and “moved into” more of an apartment style hotel so now we have a kitchen to make meals. The hospitals attached to Mayo are not allowing any visitors and the climic at this point only allows one visitor per patient. Hoping it stays that way for a little longer. Ive never had chemo before but I understand its not fun to go through let alone without having someone with you.

C is for Cancer, Chemo, CT scans We are scheduled for chemo education on Monday as well as more labs! Tuesday starts round 1A followed by rounds 1B and 1C Wednesday and Thursday.
So here is the problem with closures when you have cancer and need chemo..... who is going to shave my head?💇🏻‍♀️ I mean I really think that hair dressers should be considered essential personal. And then all the stores to get some kind of hair cover will be closed....... Real World Problem people! Lol.... Ok ok so maybe i can do some comb over thing and look like President Trump. 😜

On Tuesday I went for radiation stimulation appointment. Still waiting on approval for proton radiation but while we wait my rad doc, Dr Oliver, wanted to move along to minimize delays. It was interesting for sure. Stimulation before radiation is used to find exact position I will be in during treatments. They use a CT scan to identify where radiation beams will sent. Tattoos (like legit permanent ink) injected in three spots.....don’t get to excited theses tats are hardly noticeable.  They use a Vac Loc bag to mold a pillow to where my arms will be placed during administration. Now that all the physical prep for radiation is done my team meets and plans out treatment. Its way to freaking technical to even try and put in words. (I wish I could just insert my recorded conversations during apts with everyone).  Right now I am scheduled for radiation to start April 6.. Oh that reminds me..... my appointments can be given anytime between 7am and 12am! Lord have mercy, Because I lack seniority I dont get first dibs on appointment slots. Also because of how high tech the machines are (the delivery system takes up three stories ) only 4 people can receive treatment at a time.  (Here is a link for any nerds like myself that want to see a video about how Mayo does the Proton pencil beam https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488)

Wednesday was moving day into our new “home” the Broadway Plaza. Its super nice to have more space then a conventional hotel room. We have two bedrooms so Eric can keep working and now that he has a cold he sleeps in another room. Like I said before this place also has a kitchen so we actually have a place to sit and eat. With everything restricted or closed there hasn't been anywhere to even eat our carry out except in bed! So the space is nice. Just wish D and Rylie could be here too. Also on Wednesday I got fitted for my vent mask. Today is rest day and a day to read up on all the folders of info I received on Monday.

C is for Canceled school Its so sad to think about all the teachers and students who have to adapt to the new temp normal of distant learning. I feel so bad for HS students who are trying to make the grades for upcoming college applications, seniors who cant spend there last few months with friends and athletes who may never get a chance to play their beloved sport again. Its such a bizarre time. I do not even know how my kids are learning- Ive had to hand that over to them to figure out on their own and with the guidance of my parents.  Thank God my mom still has some teacher left in her bones! Rylie applied for a Philly field trip for Science and was accepted and thats been canceled too. But like everything else and all the other “C”s...... there is a reason this is all happening and just as I said in the beginning of my blog “Want to hear God laugh tell him your plan”!

Luckily I measured as a Medium plus and was able to get a mask with a little design! 

* comments posted using Safari do not come through! I know many have reached out saying they commented but wasn't seeing it! If you use chrome or Bing it will post. And since I am so bored and have nothing to do I fully expect everyone to reread every post and comment again JK! 

March 23: Mayo Clinic- take 2

After spending almost three weeks here last month, I can say with confidence that Mayo is taking this covid 19 very seriously- there are hardly any patients on site. Waiting rooms are empty, there is a sign every  two chairs so that no one sits there (social distancing). I witnessed many employees get in line to take there temperatures while others were constantly wiping down everything in site.  Since the clinic has been shut down to all non essential patients most were wearing masks esp around the oncology halls.😷

Today I had a PET scan to make sure that since the removal of the tumor there has not been any mets and also to look for any other activity since the original PET looked specifically for neuroendocrine cancer. Immediately after was labs, chest X-ray, Surgery follow up, Radiation oncology (consult that got moved up to today from tomorrow) and Medical oncology.  My follow up with Cassivi went well- he used a great football analogy, he was the offense and now its time for the defense to take over.  He is very confident in the oncology team I have and works very closely with Dr Oliver, the radiation oncologist. Anyhow/ Post Surgically I am healing well! Today my sodium was hi! Lol 147!! Most likely because I couldn't drink much fluid yesterday. While we were with him the PET scan report came in and is there is NO evidence of  residual, recurrent or metastatic disease! Good News!!!!🥳

Next we saw  medical oncology and radiation oncology where shit got reall!!! Despite having a successful surgery with clean borders. Chemo and radiation will still be needed to make sure that we kill any micro cancer cells (I chose to call them by another name but my mom will be reading this so I will keep it PG) that may be present. Chemo sounds pretty straight forward two meds given IV over three days administered every three weeks for four rounds (ie 12 weeks of poison). The drugs are pretty freaking harsh and come with the classic “I've got cancer hair loss”  not to mention nausea, vomiting, ringing in the ears and  possible kidney dysfunction. Good times!  Because there is no standards treatment outline available for stage 1 neuroendcorine thymic (new word alert) NON MEN-2(multiple endocrine neoplasm) small cell carcinoma the docs will use a combo similar to what they use  for small cell lung cancer. The plan is to start ASAP. Generally chemo is most effevtive if initiated within 5-6 weeks post op. Good news is that chemo is chemo and can been done by anyone once the drugs are decided on, so I can go home for this.

Radiation oncology is pretty damn technical. They compared there role in this  to that of a surgeons. It has to be an exact science of precision  They need to administer the exact amount of radiation at the exact depth to the exact location otherwise you run the risk of damaging surrounding organs. In my case thats my heart! Kind of an important one. The best choice for me would be proton radiation because they can measure the depth and width of radiation delivered as opposed to regular radiation which pin points an area and zaps everything through it and around it. As a 41 year old healthy mom (as the docs say) regular radiation puts me at great risk for heart damage and breast cancer. Yeah radiation to kill Cancer can cause breast cancer down the line. WTH 🤦🏻‍♀️ The only problem with this radiation is there isnt one close to home that can be administered directly to where my thymus was. Again, using the surgery comparison, if we use a radiation oncology location that does not treat Thymic carcinomas its like having a GYN surgeon remove your tonsils. Dr Oliver has peers at John Hopkins proton center in DC as well as Emory in Atlanta and know faculty at VCU but VCU doesnt have proton therapy. He highly suggested that not only have proton radiation but to have it at a medical institution hospital. He could not recommend Hampton proton therapy 😟 So we have some figuring out to do. Radiation is most beneficial when given during the first or second round of chemo.  It is done 5 days a week for four and a half weeks. At this point if insurance will cover proton radiation then I will stay here for 4.5 weeks and have it done in conjunction with first round of chemo.

Its a bizarre time to think about chemo, radiation, covid 19 and flying, not to me tion which hospitals and locations would be safest to be at. We have a lot to think about- but our top priority is  my health..... if staying here for radiation is the best option with the best outcome then thats what I will do.  I will be posting sign ups for who wants to come out to MN- I feel like you may all jump on it just to get away from your kids being home! JK!!  Thats all for now.

March 22: Traveling amidst Covid 19

I feel like this is all a reality show nightmare..... what a crazy year, and its only March!
Last night Dr Cassivi called to see how I was and make sure I was well enough to fly out for all my appointments Monday. He had just received word that they were canceling even more appointments, testing and surgeries that were considered routine and non emergent and wanted to touch base ASAP. He believed given the significance of the diagnosis and the requirement for high level multidisciplinary coordination that we should proceed with my appointments as scheduled on March 23. He felt that since I was healing well from surgery and my sodium was stable that it would be best to move forward as planned.  He jokingly said I was going to be the keynote patient at the clinic Monday.... at least I think he was joking. Among all his advice on surviving traveling through Chicago during a pandemic, he suggested I disregard all my appointment times after my first one and just proceed from apt to apt since not many people will be around.

Let me tell you, the travel experience was unique for sure. At Norfolk International Airport there were more employees than travelers.  One TSA agent said that they have about 300 passengers coming through today,  usual its 25,000!
Security was saying that atlanta had to close an entire terminal to park grounded Delta planes.
Our flight to Chicago was “rerouted” or detoured because there is not enough air traffic controllers. Because of this detour we missed  our connecting flight. We tried to just see if our plane was still here and of course it wasn't so we went to an AA desk one terminal down to get new boarding passed and the guy said "are you nelson" 😂
He knew our name because we were the ONLY passengers on that flight!!! They flew an empty plane to Rochester!!!

Chicago O’Hare was a ghost town. Groups of TSA agents stood around.  Check points closed. Most restaurants closed. It was very odd! Finally after about a 4 hour layover we were able to finally get out of Chicago. Our flight had five other passengers- which were all airline employees. I am just grateful that domestic flights were not suspended!

Our almost private flight to MN

March 3: Final Pathology

It was not super surprising to me when I saw that I missed a call from MN.  The follow up had been pretty significant the week following surgery. It was nice to hear the friendly voice of Dr Cassivi, what wasnt nice was what that voice was saying.

By this point anyone reading this blog has either been through it with real time texts and updates or have read the other posts......if not let me summarize.....Got sick on cruise, thought it was sea sickness, it turns out it was sodium dropping. Diagnosed with SIADH, couldnt regulate sodium in Virginia Beach despite efforts and looking for underlying cause so we decided to go to Mayo clinic to get shit done! They did find the cause of SIADH which was a tumor in my chest. It was an exceedingly rare neuroendocrine thymic carcinoid (benign cancer) that was attached to the protective layer of my heart. The tumor was removed and my sodium stabilized and has beeen normal ever since.  

The final pathology came back as a more aggressive cancer then initially thought. It was identified as a stage 1 primary neuroendocrine Thymic small cell carcinoma, not a benign carcinoid. Dr. Cassivi suggested that moving forward we would need to go back to Mayo for a follow up and add more to my team. He had just received the final report the night before and had been in touch with pathology, radiology, oncology and endocrinology. They would be actively collaborating on creating a plan. He was reassuring that although this made my diagnosis go  from what he called “green light situation to yellow” that this was something that was caught early and that he expects it to just be another great part of my story!

Later that day medical oncology called to schedule appointments with them, radiation oncology, endocrinology, PET scans, labs, Chest x-ray, and follow up with Dr Cassivi. Another long story short first available to have everyone see me in a timely manor was end of April..... the next day I received another phone call from Dr. Cassivi  assuring me that this would be done sooner- and it was- March 23 and 24.  So off to MN we go!

Zebra is the symbol
Of Neuroendocrine and rare cancers 

The ZEBRA logo, or mascot, was originally designed in 2003 by the Carcinoid Cancer Awareness Network (CCAN), now known as the Neuroendocrine Cancer Awareness Network (NCAN). This is, perhaps, why many refer to us as “The Original ZEBRA.” According to The National Geographic Society, the zebra has the most unique coat of all animals. And each individual zebra has its own striped pattern, as unique to it as fingerprints are to humans. In fact, no two are exactly alike. Just like NET patients. No two NET Cancer patients are the same.

February 26-28: Post op

By morning the pain was a little better and I was able to get up and walk down the hall.  By mid morning I had seen the surgery team as well as endocrinology team and I was on track to be discharged.  Shortly before the scheduled discharge Dr Cassivi came back in to see me alone.....without his so called entourage.  He came back alone to talk to Eric and I about being written up for educational purposes. He really felt that if we could get my “story” out in medical publications it could change the way.  He also pulled up images of the thymus gland they removed as well as the tumor inside it. We were able to talk a little more about the procedure and our plan going forward. At this point our plan seemed pretty darn straight forward. Monitor sodium one week and two weeks post op, video follow up conference call in four weeks. Imaging later this spring and summer and another video call after that.  The likelihood of regrowth of gland or tumor would decrease the longer I go without it reoccurring. I was  directed to go to the ED the minute I notice Any signs or symptoms  of sodium dropping.  No work for six weeks, no lifting anything more than 5 pounds, no bending, reaching, stretching for 6 weeks. No driving for two weeks (although I haven't driven since Dec 18th anyway, with unpredictable sodium levels i couldn't run the risk of it dropping and then seizing  while driving).  Dr Cassivi made it very clear that his patients are his until death his or the patients and that he follows them closely. He states that he would collaborate with everyone else and get something out to me to sign to release medical records for research ASAP. We said our goodbyes and he left and I got discharged to hotel for a other night.  On Friday we went for labs and headed home......17 days after we left.

The flight home was rough and we had to utilize airline wheelchair escort because my strength and well my pace was not up to up to par for maneuvering through an airport two days post thoracic surgery. Not to mention there was this “corona thing” that was starting to get a lot of attention lately.

Thymus gland showing tumor

February 25: Surgery Day

This was it, the day had come for surgery! It was so hard to wrap my head around the fact that they were going to cut into my chest remove this tumor and BAM my sodium was going to be normal!?! Although the thought of finally having normal sodium was exciting, I was terrified. I was twelve hundred miles away from home, away from Dylan and Rylie and was about to undergo a major thoracic surgery.

Mayo clinic has 87, fully functioning and most often booked all day everyday, operating rooms. As a comparison Johns Hopkins has 33, and Duke has 51. 

The pre-op waiting process was probably the worst part of my entire trip. Luckily I was having some bad nausea and dry heaves from not being able to take sodium that morning so we were put in a holding bed earlier than we thought. We took silly photos and tried to make jokes about what a "big deal" I was while we waited for surgery.

The surgery was about 2 hours which went seamlessly. Dr. Cassivi was able to remove the entire gland through the 3 incisions and did not have to use a chest tube. The tumor was 2.7cm and well encapsulated within the gland.

I'm not going to lie, when I woke up I was in more pain then I was giving child birth! The pain was horrific, every breath hurt! But after about 2 hours in the PACU, I had the most unbelievable sensation.... I had to pee!!!!! It had been almost 11 weeks since I actually felt the need to pee! I know that sounds crazy but holy cow it was incredible! I filled the bed pan time and time again. It was evident that the surgery was a success. I was no longer producing excessive, inappropriate amounts of ADH.  2 hours post op and I was like a brand new women, it made all the pain worth it. Finally after close to 5 hours in PACU I was able to move up to a regular room where my sister and Eric where waiting for me.

Labs were drawn and it had been almost 24 hours since my last dose of sodium and I was at 146!!! LOL, in the high range!!! Latter that evening I was perfectly normal at 144. And yes, I was still peeing. Plan was to get up and moving the next day and be discharged back to hotel then finally head home!

February 19-24: Understanding tNETs and Waiting

By this point it had been made more clear to us just how rare this tumor was.
About 0.2 per 1 million people have Thymic Neuroendocrine Carcinoid Tumors (tNETs). Almost all known cases are in people 15 years older than me and mostly men. The list goes on and on of what a "rare entity" this is esp in a 41 year old otherwise healthy female. It was obvious now that I was becoming "kind of a big deal" LOL!

Early that morning we met with the surgeon, Dr Cassivi, who explained the anatomy behind the tumor and how they planned to resect it. We really liked him! He was confident that he would be able to preform at VATs procedure accessing the gland through three small incisions- one under left breast, another practically in my armpit and a third through a posterior rib. He too expressed his bewilderment over my "case". Although the rarity was nerve wracking, the doctors were very reassuring that the tumor seemed to be confined to the thymus and given the fact that nothing else "lit up" on the scan that resection (removal) of the tumor should be the only treatment needed. Especially given the extensive work up I already had and everything being normal.

It was now Wednesday February 19 and my sodium was still in the 120s so factoring that into the fact that he doesn't operate on Monday's surgery was scheduled for Tuesday February 25, and I would be able to go “home” to the hotel over weekend as long as my sodium was stable.
By Friday February 21, four days after admission and  10 days after arriving in MN, I was in the safe range (132) and was able to be discharged from the hospital! I had strict orders to follow which included lab work for a sodium check on Saturday and  Monday and I was restricted to 900ml of fluid as well as staying on two tablets of NaCl three times a day.
Lucky us, we got to spend another weekend in cold ass MN- where this time of year the high rarely got out of the negatives! But thats ok because we found the cause of my sodium and this nightmare would be over in a couple days!!!!!

St Mary's Hospital Chapel

We spent the weekend and Monday- doing pretty much nothing. Ive got to say there is something strange about walking around (ok being pushed around in a wheelchair- I was really weak from the sodium drop and hospital stay) with a tumor attached to your heart! So bizarre! Eric, my sister and I spent Saturday in the hotel watching movies. My sodium shot way up Saturday morning- a number I had not seen in months- 139!!!! So exciting- sort of! Got a call from Dr Shafay and he was concerned it went to high over a short period of time😲 I was told lower NaCl down to 5 Grams a day and make sure to recheck Monday! On Sunday we went over to the hospital “chapel” for mass where the priest was able to bless me before surgery.  The chapel was INCREDIBLE! On Monday while Eric worked from the hotel room, my sister and I found a cute little shop tucked away in the clinic called 99 giggles where we spent an hour laughing at all the silly gifts and trinkets they had!  It was a great way to pass time! Oh amd the best news of all was my sodium was 142 and surgery was the next day!!!!!

Piled in one bed watching movies

My work thought this was my academy award 

February 18: The Diagnosis of tNET

A lot happened in a very short period of time after returning to the hospital.
As I mentioned, it was very soon after getting settled back into bed when endocrinology came in. As with all the doctors, my hospital endocrinologist was as sweet as could be. I sometimes replay in my mind how I could have been given this news differently and am thankful for how Dr. Genere handled it.

"......more importantly I am here to talk about your PET scan and we found the problem...….hormone producing neuroendocrine mass on thymus...very rare.....cancerous.....benign.... meet with cardio thoracic surgeon.....THIS IS THE CAUSE of your SIADH"...... Finally we had an answer! I think I actually smiled, felt happy, or perhaps relieved. I don't know all I know was that we had an answer. 

The PET scan, as mentioned before, was a very specific, very expensive, not often used scan that was used to identify hormone secretring neuroendocrine tumors and it found one in me. Dr. Genere spent about 35 minutes with is and as she was leaving, Dr. Shafay also came in to discuss the results. He pulled up a chair sat down and answered all our questions, he too sat with us for close to an hour. He explained that the thymus gland was part of the development of the immune system as an embryo and that it usually shrinks up and disappears as we get older. He also explained that neuroendocrine tumors are not generally seen in the gland but that I clearly had one. He reassured us that no other spots lit up on the exam. As he was leaving, a cardiothoracic resident came in to show us the tumor and explain what there role in this would be, which was obviously to remove the damn thing. Only tricky part was that it was very close to the heart but they were confident that this could be done with VATS procedure and not have to crack ribs or chest. At 6:45pm my cell phone rang and it was Dr. Natt from the clinic, she just could not believe that our "Hail Mary" attempt to find the cause actually found the cause! As empathetic as she was, she was so relieved that my SIADH would finally be resolved. 

The rest of the evening held many different emotions, relief, fear, and joy when my sister finally arrived! Yup she went Tampa---Baltimore---Rochester, NY----Chicago-----Rochester, MN! But made it there just as all the doctors left my room — Perfect timing. 

One of the unique aspects of being at mayo is the collaborative care approach they take. As I mentioned before Dr. Shafay was my team lead and I had other specialists involved and now we added thoracic surgery. This team actually sits down and meets to talk about the patient and not just once , everyday, multiple times a day. And as things happen, the team talks again.  There is not a moment that one member doesn't know whats going on, they are all on the same page and work closely together to provide the best outcome possible. 

ADH secreting neuroendocrine Thymic Carcinoid 

February 17-18: Mayo Clinic Part 2

It was Monday morning, February 17 and we had a mission.
We had to get insurance to  assess the claim and deny the PET scan so that they could have a denial number so that they could do the peer to peer and approve it so it could be done that morning so we can fly home Tuesday. Seems impossible right? Not at Mayo! The short version of the story is that is exactly what happened, sort of. By 9am we (and that includes my "scheduler" friend from Friday) managed to cancel our 7am PET, get insurance to deny the scan, had Endocrinology talk to insurance, Insurance changed the type of PET to a more in depth scan, and got rescheduled for PET at 12pm! WOW what a morning. Since we had time to kill and my sodium was still unstable, we decided to have labs done while I wait for scan. Not even an hour after labs, just before 12pm we got a call...…..My sodium had Dropped!! What the hell! I was on NaCl suppliments and fluid restrictions, how could it drop and drop down 7 points to 120???? The endocrinology department told me to let the PET team know that I need to be transported to the hospital for admission and to cancel the scan.

By 3pm that afternoon, I had been transported to Mayo Clinic's Hospital, St Marys  was evaluated in the ED (where they had already talked to Dr Natt and knew almost everything about me) was admitted to the hospital and transported to the floor. In a matter of a few hours following admission the hospital had started forming my "team." This team started out with an internal medicine doctor with his NP, PA and medical student. He was considered my team lead. It was his role to facilitate  care with every other specialist from that point on. In addition to him, I had endocrinology and Nephrology visit me as well. They cut my fluids down to 950ml, increased my sodium to 6 Grams a day and added Lasix (a diuretic) in hopes to get some fluid off me and raise my sodium. The PET scan was rescheduled for the next morning and of course labs were being run almost around the clock. Nurses would come in and assess not only my vitals but mental status as well. (At a hyponatremic state as such, many people begin to have neurological affects and are unable to recall location, date or their own name.)  Sodium hanging Out at 120s while on supplemental NaCl was a tad anxiety provoking for myself and my team. By the end of the day. Even on 40mg of Lasix, I was still not peeing! None of the nurses could believe it.

 I don't know how many times they would make a joke about how "fun" it was going to be on Lasix.....Then the shear look of disappointment when I didn't void. And Believe me, as a fellow nurse, we take Is & Os very seriously!!

Due to my inability to void for hours,  Ultrasound was called up to scan my bladder to see if I needed to be catharized....Bladder was empty. This is "important" because it shows how desperately hard my body was working to hold onto fluid and how by holding this fluid my sodium was constantly being diluted.  So where was all this fluid- I must have been busting at the seems with 3+ pitting edema right? WRONG. I had no obvious swelling. The ADH production was causing me to hold fluid in third spacing/ intracellularly. This hormone was out of control, and at this point no one knew what was causing it.

Tuesday morning came and the middle of the night sodium check showed I was up to 123. Later that morning I was transported back to the clinic to have a very specific PET scan done to look for very specific tumors called neuroendocrine hormone producing tumors. Yes it was nerve racking, and I was scared shitless but that morning something very funny happened and it had me laughing all afternoon. My sister was coming out to Mayo Clinic from FL and she had actually booked and traveled to the wrong Rochester and landed in Rochester, NY instead of MN!!!!!

 Don't worry she had a full on panic attack, was able to catch another (correct) flight to MN and still made it to Rochester, MN by 7pm. 

The PET scan took almost the entire day. Between transport, waiting for the Dotatate contrast to be prepped, infusing the contrast and having the scan it took about 4 hours. It was about 4pm by the time I was transported back to the hospital. I was already aware that my sodium had dropped down to 120 prior to PET scan so I was not alarmed that shortly after getting situated back at the hospital the endocrinology team came in. I figured that they were there to tell me that I needed more NaCl. Again, I was wrong.

A visit from a therapy dog

February 12-16: Our Trip to Mayo Clinic Part 1

It was Wedensday February 12 and we were off to Minnesota. We were planning on being there for 3 days and hopeful to find some kind of answer.  Surprisingly I felt pretty darn good. Having NaCl back on baord gave me a little energy boost and everything seemed ok. Which made me feel like a real idiot heading into my appointment the next day. On February 13 we meet with Dr Natt. She spent every bit of 50 minutes with us. She reviewed labs, looked at tests that were done locally, and most importantly she LISTENED. She heard that what I was going through was not normal.  She picked up on my shortness of breath.  She ordered some cardiovascular tests, some more routine SIADH labs, and more specific labs to look at cancer markers.  She had radiologists there look at my head MRI to rule out ENT tumors that could have been missed. Additionally,  she reviewed the report on the CT they did at home of abdomen, chest and pelvis and scheduled me a follow up for THE NEXT DAY.

On Friday February 14 we had our follow up with Dr Natt. Surprise everything was normal except for SIADH labs. I was so frustrated. And to top it all off, my sodium had only gone up 1 point in over three days. Nothing was making sense.  It felt like a complete waste of time and money. I could not believe that they didnt find a solid answer. I pretty much pleaded with the doctor, "there has to be something else we can do." She excused herself from the room and went to talk to endocrinology in the hospital and radiology. About 15 minutes later she returned and said there is only one more test we could do and its a full body PET scan. YIKES!☹ Not only was that scary it was 2pm on a Friday afternoon and our flight was leaving the next day! Want to hear God laugh...…..Tell him your plan!

When I say there is no place like Mayo Clinic, there is truly no place like Mayo Clinic. Dr. Natt fought for me, she heard me, she wanted to help me. She did not want to blame me for drinking to much water, or say anxiety was causing this. She was not ok with leaving me on NaCl indefinitely. In 15 minutes she was able to pull a team of heads together and figure out another step. And that's just the begining. 

So here we are, its Friday afternoon, and we have to try and find a way to scan my entire body to look for what is deemed the last piece of the puzzle. The "scheduler" (and I use that term in quotes because these people do way more then just schedule appointments for you) was on the phone for close to two hours talking to insurance, billing and processing at the clinic, talking to radiology trying to get us in ASAP...….and that was Monday! UGH MONDAY- like in 3 days!  And even Monday may not happen because it was most likely going to need authorization or what's called a peer to peer between Dr Natt and BCBS.
We almost said forget it, we almost walked out, we almost took the chance of coming home and having it done here which would probably take at least a month to schedule. Somehow, someway, we decided to stay and take a chance that insurance would approve it and fly home later that day or the next.

There is not much of anything to do in Rochester, MN in February.....Our weekend was pretty uneventful- and that's not what this is all about anyway.

January-February: No progress

The day after going home my sodium was down into the 120s again. I was told to start Sodium Chloride (NaCl) 1 gram three times a day and to restrict my fluids to 1.5 liters (50 ounces a day). The month following being discharged from the hospital was a complete waiting game. Over the course of next four weeks I had my labs checked about twice a week and despite being on NaCl tablets and fluid restriction my sodium was not stabilizing. I was at the lab so much, the employees there knew me. The phlebotomists really got to know me and would tell me whether I was looking good or not so good. They even suggested I put myself to work while I was there waiting since I was spending so much time there.

The Nephrologist I was seeing ordered some further testing to rule out pituitary tumor and cortisol involvement and all came back normal. The diagnosis was now idiopathic SIADH. In other words, no one had a clue why I was producing so much ADH and diluting my sodium. My symptoms were another head scratcher. I was fatigued, really short of breath and still hardly peeing at all. My headaches were unrelieved by Tylenol, and I felt very fatigued...... but there was no known cause, so it must be my anxiety level that was producing ADH secretion..... Yep, was actually told that!

Eric was not willing to settle and believe that this was my new normal. He had just returned from a business trip to Mayo Clinic and after getting a behind the scenes look at what health care there was like he was insistent that we go and see what they think. I was hesitant and first. I mean people only go to Mayo Clinic if something is really wrong and I just had low sodium...…..Or so we thought.
We called Mayo and could not believe how fast we were able to get in.  Around here, my Endocrinology consult was made in January and was not until April 17!!!!! We were able to get into the Nations Number 1 hospital and be seen in less than 2 weeks. Our appointment was set for February 13. And thank goodness we did because On February 7 at a sodium of 132, my Nephrologist decided we should see what happens when I stop NaCl. I had been weaning off them and holding in low 130s. On February 10 with no supplemental sodium, I was back down to mid 120s. It was at that moment that I knew Eric was right, we had to go to Minnesota and see what Mayo had to say.

Mayo Clinic in Rochester, MN

Dec 20- Jan 6: How it all started

Ok, here is a brief recap of how this all started. On December 20, 2019 we were on our family cruise to the Panama Canal when I got what appeared to be sea sick on the first evening at sea. I tried everything possible to control the vomitting (patch, bands, zofran, peppermint, green apples, nexium, etc) 🤢 By December 23 I was feeling so bad that Eric had the clinic come get me from our state room and take me to see the doctor on the ship. They deemed my nausea, vomiting, dehydration and headache as typical sea sickness, gave me a shot in the butt, electrolyte solution and oral anti-nausea meds and sent me on my way. "Bon Voyage, enjoy the rest of your trip!" ⚓️

I felt a little better the next day in time for Christmas Eve ( my family calls it the Christmas Miracle) 🎄🎅🏼 and days to follow were on and off- I was able to get off the ship at every stop and there were days I was ok, but I was never able to get through 24 hours without being sick again. By the 4th day I had nothing but  horrible dry heaves left in me.  Eric and I both knew something was not right but couldn't understand what could possible be wrong. Everyday there was something different. Some evenings I was having flutters in my chest, others I was having muscle cramps and spasms, I was beginning to have horrible body odor and I was just not peeing!
 Its Ok though, the kids were in a different room and barely noticed I was down and out the entire time. I mean the show must go on right??? I have some photos of formal night with Eric and the kids I can photo shop myself into and I was well enough to wear my Mrs Clause ugly Christmas dress (see photo below) one night! And although there were some terrible moments - ok a lot of terrible moments - about being sick at seas for ten days...... with my family, we still managed to have a lot of laughs..... perhaps we even had over 99 giggles!!!! 😂

Anyway,  on Dec 30, the 10th day of the cruise (or what felt like the 100th day) when we docked back in Ft Lauderdale I thought " finally I will stop feeling so bad" but that wasn't the case. I was actually the worst I had been!! My sister used her "elite" status she somehow ended up with to get me off the ship right away. There was nothing comforting about the looks I got leaving the ship! We arrived home on December 31 when I finally went a full 36 hours without dry heaving, which is good because Jenny and Forrest had extended there Christmas trip home to VaBeach so they could spend a few days with us! Sorry guys,  that didnt work out to well did it???🤷🏻‍♀️

On the night of January 1st all shit hit the fan. It was around dinner time when I felt my face started to burn, my lips felt like they were about to split open and my head was pounding. No matter how much chap stick i applied or lotion I put on there was no relief. My legs started cramping again and my stomach was very unsettled. By the middle of the night I must have started hallucinating. I felt feverish, confused, every organ in my body was screaming at me. My feet were burning, I wasn't sure if the house was burning or if my feet were on fire. The nausea started and then then dry heaving returned. My heart actually started hurting and it began to be hard to breath, talk, and make decisions. I was seen at my office that morning and had a full workup...... every test we could have done in the office came back ok and despite appearing as a train wreck my vitals and physical exam were normal and it looked like dehydration - IV fluids seemed the best route but would have to go to ED or somewhere  else for that.  Despite my Stubbornness and Fear of “overreacting” Later that day we finally decided it would be best if Eric took me somewhere to get IV fluids.

So there I was with a bucket for vomit, looking like a complete  HOT mess and it was the day after New Years 🤦🏻‍♀️Luckily the PA that saw me didn't just take one look at this pathetic human being, throwing up and miserable and just blow me off as a hungover drunk!  LOL!!!! He was able to run an electrolyte test in office and got the results just as I was finishing a second bag of IV fluids. He came into the room very startled and forcefully suggested we get to the ED right away——my sodium was 110 (normal is 135-145: remember these numbers you will her a LOT about them)
A sodium of 110 is a critical emergency and can be life threatening.. I was taken by ambulance to the ED and was quickly diagnosed with Critical Hyponatremia (fancy medical term for low sodium). After 18 hours in the ED and a round of 3% hypertonic saline (very potent sodium IV used to carefully increase sodium) my level was finally up to 119. (WOO HOO! Sad that 119 sounded great at that time.) A bed in ICU step down unit was finally available and I was moved out of the ER.
LOOOONNNGGGGG story shortish I spent 5 days in the hospital where my sodium fluctuated daily. They speculated a lot- even blammed my love of water consumption for causing the hyponatremia. Wonder why they never questioned my love for wine consumption. 😄 I eventually was diagnosed with SIADH- Syndrome of Inappropriate Anti Diuretic Hormone (another term you will hear a lot)……..what does this mean???? Well we all have the ability to produce ADH (anti diuretic hormone) its what keeps us from peeing all the time. But sometimes it gets a little crazy out of control and decides it just wont let your body get rid of ANY fluid, hense why I wasn't peeing! Ok great- so what caused it????  The FAMOUS question- whelp in the hospital they "ruled out" all obvious causes- supposedly- ie  obvious medications and malignancies with a CT of chest, abdomen, and pelvis and they figured it was just taking my system to a little while to regulate from being "sea sick". There were a lot of “theories” but ultimately it came down to fact that despite not identifying a cause and needing a second round of hypertonic saline,  my sodium was settling into the 130s and it was getting time for them to boot me out. SO on Jan 6,  they sent me home just to have my sodium drop into mid 120s the very next day!