Music and miracles

After silence, that which comes nearest to expressing the inexpressible is music.” – Aldous Huxley

February 26-28. initial test days……

Thursday (day one with just sodium and no samsca) went ok. I don't have a scale and it's only been one day…… but I felt ok. I usually don't have any nausea until sodium hits 121 and weight gain (from what I can analyze from the past) is sudden yet back and forth when the sodium begins to drop. I had supplemental NaCl on board and was on 1liter fluid restriction AND well I took an ativan- to calm my nerves. That morning my mind was calm but guarded. Getting labs done isn't the hard part it is those ten seconds between seeing “You have new Labs” pop up on my phone and opening the test result. Those seconds are enough to get my heart rate up into the cardio range!! 

        

       I go at 9am to get it checked and will know by 10am what the level looks like. As I mentioned yesterday, if it is low we have to stay optimistic that perhaps it was tested too soon. Regardless of knowing that- I will most certainly be freaking out of it drops. Luckily if it does go to 120 I should 🤞🏻be able to avoid being admitted to the hospital since I have the Samsca here at hotel! 

About an hour after the blood draw I was going through mail via facetime With Jenny. She was reading me a prayer card from Lourdes when I opened my lab results and was stunned to see three beautiful numbers 1 4 and 0! 140! Tears poured out. This time tears of joy! I have been off Samsca since 9am wednesday. Thursday I was on fluid restriction and  4 grams of sodium tabs and the last sodium tab was at 6pm Thursday night.  At 9 am Friday my sodium was 140!!!!!!!!!!!!  Not sure what this means but I have to believe This is a good sign of HOPE FOR RIGHT NOW!!!!!! 

Shortly after reviewing the results Christine arrived so I was all geared up and ready to let my guard down and enjoy being with her. Right off the bat the laughs started and continued ALL DAY. My abs are going to be sore by the time she leaves!!!! Naturally I Showed her around Mayo and she went with me to get Dr Natt the message about my sodium and decide on what to do and what meds to take for the weekend. Dr Natt and I decided to stay off Samsca again Friday and cont sodium tablets and fluid restrictions for another 24 and recheck Saturday am. 

Friday's prayer service was beautiful again. Christine's oldest daughter Olive played the guitar and sang Hallelujah. It was PERFECT! I have always found such peace and relaxation in music. Almost everyday some music, mostly relaxing meditation, plays throughout my house. Many people have sent me links to spiritual songs for hope and inspiration. I am going to share them at the end of this blog if anyone else wants to feel the power of music. 

Saturday morning bought a lot of nerves again. I was super thirsty, and again couldn't decide if the nausea is nerves or sodium. I guess I have not fully handed the keys over for Jesus to just take the wheel. 

  

          “Jesus, take the wheel. Take it from my hands. 'Cause I can't do this on my own I'm letting go. 

So give me one more chance And save me from this road I'm on Jesus, take the wheel” (song by Carrie Underwood)

It was less than an hour after the blood draw that I was alerted with the results….. 1 4 2. We had a group hug on the side of the road and immediately changed directions and headed to the St Mary's Chapel. The chapel has been closed since last March because of COVID but I remembered there was a quiet space with a bench and a statue of Mary just outside. Christine, Eric and I feel to the feet of the statue of the Blessed Mother and prayed for Thanksgiving andb divine intervention. That made two normal sodium readings in 24 hours with just NaCl tablets and fluid restrictions. 

The rest of the day was beautiful in so many ways. The weather was sunny and above freezing, I could breathe “normal” for the first time in a long time, and what seemed like a miracle was within reach. We walked around all day, had a lot of laughs, and a great dinner (where Eric ate too much dessert!). I write these words with so much hope but remain cautiously optimistic. Eric always tells Dylan in the game of baseball never get too high and never get too low- stay steady. I never totally understood that until now. 

Today is Sunday so I am writing this in present tense now. It's cold and rainy and Christine has left. We went to mass again this morning (despite hearing the message last night) we saw “Saint” Michael and naturally he remembered us. Hahaha. We thought about just waiting by his car after mass to catch a ride again but we did not- I Kid I kid 🤣. Now we are sitting and waiting for my daily blood work.

I Know this will  eventually get easier but damn….even after church, breath work and mindfulness I would be lying if I said I Was not nervous.  Jesus take the wheel!!! 

Andddddd......... Today's sodium is 1 4 4!!! This makes me think that my brain is now producing ADH!!!!! Is this a miracle????? This could mean that the tumors may be frozen and no longer producing ADH. The sodium tablets I am taking (with the fluid restriction) are just adding extra salt into my system hence the reason my levels are getting higher and higher. Although I have not received Word from Dr Natt yet  I am guessing I will cut sodium in half today to 2grams and see what happens. I believe prayers are being answered!!!!!!!! I get more labs tomorrow and see Dr Dimou in the afternoon. I know this is just the beginning of a very long road (God willing) but today I am going to enjoy this moment!!!!! (PS by the time I got around to post this I heard from Dr Natt and she suggested moving forward just as I anticipated.)

In the meantime Enjoy these inspirational songs that people have been sending me ….. And video of Olive Willis singing Hallelujah

1. https://youtu.be/UhTHgaCjTJs

2. https://youtu.be/vrWdkziEuyA

3. https://youtu.be/X90XBZSSX2I

4. https://youtu.be/H-ggZd-SmSs

5. https://youtu.be/u1JBSQMkQEo

6. https://fanlink.to/ld-holdontome?fbclid=IwAR3KqHm-uWV_iyGOuRTekUn0I9Gsb2FIxboiEOKP7_Isj-WNHFRVD4FfIS0

7. https://youtu.be/fkYL1b7MCEw

8. https://youtu.be/kkJC8p48g6g

9. https://youtu.be/t7owFiihXgg

10. https://youtu.be/hN5WMvtzaD8

11. https://youtu.be/_bBf3NkShVM

    
    

    12. https://youtu.be/xrAdbH28gIg

    
    

    
    

    
    

February 24

 

“The world ain’t all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t how hard you hit; it’s about how hard you can get hit, and keep moving forward.” – Rocky Balboa

February 24. Where is time going? It's surprising that as long as the days have seemed this year It has only been one year since surgery. Tomorrow marks one year since they removed my Thymus. I'm not going to lie- it was borderline kind of cool at the time that they found this crazy rare tumor they removed it and everything returned back to normal. No one expected all THIS.  

Let's start with good news, 

Good News...... my liver has rebounded back into the normal range! Which means we don't have to worry about stopping Samsca early. Annnnd I can drink wine with less reservation!

Good news......My spirit is healing. My anxiety is lessening.  I am sleeping better. A friend offered me some really great advice..... “Honoring wherever you’re at is 100% more than okay.”—— that advice has helped me accept what I am feeling every day! I am blanketed and comforted in love and support and prayers from so many. I am seeing all the messages, reading all the cards and listening to all the songs you have sent me for strength. If I haven’t said it enough- THANK YOU!

Good News...... Jenny came to visit! I got to show her all around The Mayo Clinic and the exciting city if Rochester! It was finally out of the negatives when she was here so she missed out on the bitter eye lash freezing cold. We did some shopping of course and We had a lot of good laughs, good wine and a lot of good tears. She is with the kids now as my parents returned to DE for their second COVID vaccine. With no return flight scheduled to Washington State Im hopping she will still be around when I get home.

Good News..... The beauty of technology has kept me feeling connected to everyone at home. Zoom prayer group, and FaceTime make it seem like I am not so far away. Seeing the kids, family, and friends daily just warms my heart.

Good News..... So many people had been inquiring about where to get a Zebra shirt so a friend of mine designed one! She is a VaBeach artist and man did she do a great job! (The zebra below is her awesome creation) It was a huge surprise. She incorporated the Italian mountain range we climbed three years ago in the mane of the zebra as well as the reflection of the ocean in the sun glasses. She thought it would be a great way to have something special out there for the people that asked. We can not believe that almost 320 people purchased one!!!!!! How amazing is that! Also, my work family jumped on the zebra train too and got zebra print scrub tops to wear on Mondays!!!! See pic below.

Here is the update..... it's boring here and its a waiting game. End of story. Just kidding. 

This is so mind blowingly confusing ---- currently we are Trying to decipher  when my brain will take back over the control of ADH production because right now its the cancer producing it so the brain is, well, shut down.  

Once the "tumors" are controlled then the brain will start doing its job again..... hopefully. Right now the sodium medication (Samsca)  is controlling the production of the hormone secreted by the "tumors'' so the brain is just straight chillin. The brain will only kick back on if the tumors get controlled by injection. And round and round we go.🤪

Dr Natt and her colleagues met last week prior to my appointment on Friday. Let it be known They had to break out a dry erase board and really work hard at coming up with a plan. She also met with Dr Dimou this past Monday about getting another PET in the next few weeks and when to start testing the efficacy of Sandostatin. She hopes to contact the SIADH specialist at Georgetown (the one she was going to try and get me to see last year) to run everything by him as well.  We have an appointment today (Wednesday) with Dr Natt and it sounds like she is planning on weaning of the Samsca this week BUT will want me on sodium tablets and urea powder as cushion. We will know more later. Stay tuned.

In the meantime.....Sodium update:

Initially my sodium shot up to 144 and on Friday dropped to 140 it has managed to stay there over the weekend and was 140 Yesterday. Although it is GREAT that the levels are not dropping it is a negligible sign because we do not know if its the Samsca or my brain but we also know its not getting worse, so there is that! 

I will see some of you at prayer service Friday..... It always gives me something to look forward to ☺️ Please pray that coming off the Samsca will be uneventful and that the Sandostatin injection is working. 

Also I ask we pray for my mind to be at peace. The body feels everything the mind thinks which has been a great struggle for me this time.

Angels everywhere

“Sometimes the most productive thing you can do is rest and let your angels wrap you in their loving wings. They've got you covered.” - Anna Taylor

I have so many wonderful stories to share with you before my update. I do not ever want to forget some of these so I document them to always be reminded of the angels that surround me. 

Saturday night was perfection. Lori’s family is so beautiful and were incredibly welcoming- it was as close to feeling at home as it could be when home is over 1000 miles away. She has four children, one in college, twin 12 year old girls and a 14 year old girl. The girls spent the entire evening socializing with us, bringing me puppies to hold and providing lots of laughs. They made us the famous Minnesota “hot dish” for dinner and brownies for dessert. We stayed until about 9:30 then Lori drove Eric and I back to the hotel. For 4.5 hours we were normal again and that evening was the best night sleep we have had all week. Lori and her family are true angels on earth. 🙏🏻😇

Sunday was freezing! Super cold, wind chill was -34. Since we “moved” a little outside of downtown we had close to a mile walk to get to church. We bundled up in all the layers we had and headed out. When I tell you it was cold- You should know my eyelashes froze. We arrived at church early and were greeted by a sweet young couple. As so many of you know- I talk to strangers- All the time! So naturally I started chatting with the greeters while I waited for Eric to finish in the bathroom. A couple minutes after settling in our pew in the church the young woman approached us offering us a ride back to the hotel after mass with her husband.It was a no brainer, we accepted! At the conclusion of mass we met up with the young man and hopped in his car for a warm ride back “home.” Again, I started chatting with the young man and it turns out he is a fellow in medical oncology and works with Dr Dimou!!! I quickly explained my diagnosis and asked him to pray for me. He enthusiastically accepted to pray for both Eric and I. As we approached the hotel he told us his name….. Michael, the same name Dylan chose as his Saint name for confirmation this year. Michael is a true angel on earth. 🙏🏻😇

Monday, as I was walking around 99 giggles getting my dose of humor therapy, I got a text. In the message was a picture of a group of boys. When I opened it to get a better look my heart exploded! I could not believe what I was looking at. It was a group of 13 young men. Thirteen 16&17 year old boys with Dylan in the middle. It was the group of boys that made me a baseball mom! It was the Wolfpack baseball team, the very first travel team that all those 13 boys were on. That team was short lived but the love we shared with all those families through good and bad is something so very special. Those teenage boys from near and far took time from their day to come together and show love and support for Dylan, my family and myself. Those boys, their families and the friends that organized that are true angels on earth. 🙏🏻😇

First thing this morning I received a message through my patient portal from my oncologist at home, he was just checking to see how the injection was going and how I Was doing. A couple hours later I got a text message from Dr. Olivier. He too wanted to check on me and see how everything was going. He said He is like an old uncle and he worries, he also reminded me, “I’m here for you and Eric” and reassures me that Dr Dimou cares a lot too and is a great oncologist. Not even 15 minutes later I get another text from a pediatrician I used to work with 20 years ago. He had just received my Christmas card and was shocked to hear I had been sick and thrilled I Was better. Obviously I brought him up to date and now he Offers us in prayer. Finally, this afternoon I got a text message from a pediatrician I Worked with 10 years ago who has been following my blog since last year. She went on FB today to let everyone know she was signing off for Lent which starts tomorrow and learned about what was going on. She told me I will be her special intention for the next 40days! What are the odds that I Would hear from all these doctors on the same day??? These doctors and all the doctors caring for me are true angels on earth. 🙏🏻😇

It's amazing, truly amazing,  that Everyday I receive messages on facebook, instagram, texts, and messages on this blog from both strangers and people I know/ friends- as far back as elementary school. Not only my friends but friends of friends of friends. People I have never met, that know me only through my words in this blog or through stories from others. And of course my inner circle of prayer warriors. The people I have grown so close to that I was so thankful to have as friends have become my army and a righteous one at that!  And it needs to be mentioned,  It will never be forgotten the trending hashtag of the week that Brooke and MaryJo started when they ran the 14k race I Was registered for #8forkate. Are you KIDDING ME??? Wow!!!! Even my brother in law who, God bless him, is not athletic got on board by drinking 8 beers for me. 🏃🏻‍♀️⛷🚴🏼🏊🏻‍♀️🧘🏻‍♀️and 🍻!! It's so funny how these things just take off without being planned out. The prayer group, meal train, and outpouring of love in so many ways has been incredible. All of you, each and everyone one, and all the people you turned to and asked for prayers- you are all true angels on earth! I feel the prayers and my anxiety lessens everyday. 🙏🏻😇

I share all this, not to be “boastful” (is that the right word?)  but because I am just so incredibly grateful for all these blessings, prayers, and angels that surround me. I wanted/ I needed to share to show you all the power of prayer and to continue begging for more!!! 

Ok Now for the update. And after being soooooo long winded already I will try and keep it short. 😬 We saw Dr Natt (and you can all already guess, she is an angel on earth 🙏🏻😇) Monday late afternoon and she is fully on board the Kates weird cancer train. She will be running the sodium part of the train! She was less than thrilled to see me sitting across from her again but had been brought up to speed from Dr Dimou. She also admits that she has never uses this medication let alone has ever heard of using it  for my specific condition but is continuously educating herself so she can be as helpful as possible. There is a small new "problem" with my LFTs (liver functions) they are not cooperating on the Samsca. My sodium is 144 but ALT(liver function) was in 50s- (which is outside the normal range and 4 times higher than my average.)  You would think that means i should not be having a glass of wine at night but Screw that! A half glass never killed anyone! 🍷

So now we have to monitor LFTs as well as sodium and will recheck both on Friday. In the meantime she will be consulting with a Liver specialist to discuss long term effects from Samsca.  I can only be on Samsca for 30 days and we can't "test" the injection efficacy until 2 weeks after treatment was started....... unless the samaca keeps elevating my liver then we have to "speed" it all up- if that makes sense. She did say that this is not something we can “plan” so we don't know exactly how long we will be here. 

So we sit and we wait. And I don't even have a puzzle, 😉but I have a coloring book. As much as I hate being away from home again this is just where I need to be and if they can help me, prolong my life, then its worth it. 

Hope

• “But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” – Isaiah 40:31

Humbled, honored, most certainly blessed, I am not sure which word best describes how I have felt today. The pure love and support that has been pouring in is extraordinary. So many people have been praying not only for me but for my family, friends and medical team. I can't even find words powerful enough to express my gratitude. 

Yesterday was a very long day. Once we got settled at the hotel we contact Dr Dimous office and let them know I had arrived. He already had orders in my chart to get labs and schedule an apt ASAP. I called at 2, had labs at 2:20 and was scheduled to see him at 4:00 or “whenever I Was done with Dr Olivier.” Things were moving quickly already. 

 It is nice to see the halls of the clinic bustling with people again and to see so many of the little shops that survived from being closed so long from COVID. I was able to “surprise” my friend Lori (the one I made last year from the cancer store) We had kept in touch after Eric and I got home this spring and chatted over text not long ago. It was a very special moment when she came out of her office and saw my face. She knew  in an instant, that me being there meant something was not right. She immediately embraced me and we both started crying. Our visit was cut short because of my appointment with Radiology oncology. I have sense been in touch with her and she is having Eric and I over for dinner tomorrow night! ——Lori is also a dog breeder and has some pups at home, Rylie is going to freak out when she sees the 6 day old puppies I am going to cuddle with! I am so lucky to have met her and to have a support system right here in Rochester. 

Dr Olivier (insert deep peaceful breath) is one of the kindest souls I have encountered. I have always felt at ease when I talk to him and he almost always provides reassurance and comfort. Yesterday was no exception. Have you ever been in a position when you have held your shit together as best you could and then you see someone and it all just surfaces at once? Well, thats what happened with Dr Olivier. Full on ugly, hyperventilating, mask suffocating, snot flowing break down. Almost embarrasses me to type that! Those prayers Everyone has been praying, for my medical team, they certainly reached him. As he watched my ugly meltdown he got up, walked to the sink and washed his hands. As he walked back toward me he said, “I washed my hands because I am going to come hold yours” and he did. As he held and squeezed my hands he looked me deep in the eye and told me they were going to take care of me. He had been in contact with radiology specialists and my team of doctors at Mayo and assured me they have a game plan! He spent close to an hour discussing how there are treatment options that the team has come up with. The important thing is how we approach these options and use them slowly and wisely to get maximum time and benefit from them. He said this is exactly the steps he would take if I were his daughter, sister or wife. He provided great hope and with great hope comes peace…… something I Was desperate for.  More was explained in depth which I will try my best to summarize at the end. 

After we finished with Dr Olivier we went directly to oncology to meet with Dimou. This visit was also over an hour long. Its terrifying to hear the words metastatic cancer be used in reference to your own health. When you hear a metastatic small cell carcinoma (SCC) that metastasized to the bones you expect to see an old smoker sitting in the room, not a 42 year old runner. Not me! But I Guess we all say that at some point- “that wouldn't be me”  😌 

Dr Dimou, as with everyone else, has never seen or read of a cancer situation/diagnosis like mine. He repeated often during the visit how there is just no information out there so they're doing their best with what pathology and tumor analysis has provided. They know it is small cell carcinoma but are suspicious to whether its behavior is actually following that of SCC of the lung or if its origination from the Thymus makes it behave differently. And that is where the hope comes in!  They attacked it - balls to the wall, no holds barred full on Surgery, radiation, chemo initially and it still returned in an unlikely fashion….. so they have opted to think outside the box. And this is where prayers are being heard! Praise God! 

Bear with me as I try and explain the plan and/or theory….. We discussed not only our initial plan of attack but briefly touched on the fact that there are others that can follow. What we HAVE STARTED is an injection called Sandostatin. The hope is that the medication identifies hormone producing cancer cells and stops them in their tracks (calls off the party) and gets them to stop producing the ADH hormone. Additionally it should stop the growth and replication of these lesions. The fact that they produce ADH and cause my sodium to drop is a blessing so we will know if the  medication is working if my sodium increases. That is where it can get complicated. For lack of better words, I am pretty much at equal risk of my sodium killing me as the cancer 😬 so we have to be careful on how we wean off sodium treatment to verify efficacy of injection. It's all really complicated. I have an appointment Monday with endocrinology and will be seeing the wonderful Dr Natt again!! She will be the one that helps monitor and control the sodium part of all of this.

If successful, this injection may have the potential to work for some years. Although none of the options available at this point in time will cure me, we hope for the possibility of successful long(er) term treatment. The intent is to try and treat this systemically and do so in a way so we can play “the long game” giving me the best chance to hopefully be able to live with this and fight it off as best and long as possible.  They are hopeful and optimistic that with the number of options they are considering it gives us a good chance to keep on fighting. 

I received the first injection this afternoon with no side effects. Which could be good or bad- but no sense wasting energy reading into that. We should be able to begin seeing if it worked within two weeks. Until then we continue to pray. Hard.

PS  We Certainly do not intend on staying 40 days again 😉 but To spare any mad rush back to MN for sodium control or med change We will be staying in Rochester until we know the injection is working.

Chapter 2 cont

“I get knocked down, but I get up again” Song by Chumbawamba

Ok picking up from where we left off. This is what we know. The cancer is back. Based on a follow up bone MRI after the PET my bones in my neck and leg are structurally intact and solid with no risk of fracture but there are three spots not just one in my left femur. And to think I have been running 25 miles a week and swimming a mile twice a week- never knowing- and I was planning on running a 14k Saturday and a half marathon in March! Ugh!  Cancer really is a SOB, and thinks its funny too…… trying to attack the exact areas I have been strengthening to make my body strong and healthy….. 

We know Surgery is not an option because there is no “tumor” or anything to cut out. We could possibly remove one but that will not accomplish anything. In the meantime we had to find a way to control my sodium long term because these cancer cells are secreting ADH and causing my low sodium. I am on a medication called Samsca which is holding me steady in the low 130s. The medication is hard on my liver and is already causing my liver enzymes to nearly double every day. We Can't permanently fix my sodium until we get rid of the cancer cells. Our chemo options are limited because of my polysorbate allergy  and radiation on five cancer spots would be too hard on my bone marrow while on two chemo drugs and immunotherapy. The punches just kept coming.

Luckily, During my hospitalization, Rafe was in touch with multiple doctors at Mayo. My local oncologist was also involved and spoke to Dr Dimou (mayo medical oncology) multiple times. Based on all the conversations it seemed like Mayo Clinic had some thoughts and available treatment options that are not available at home. Because these cancer cells are so sensitive to Dototate they believe maybe they will respond to an injection that binds to and attacks hormone secreting cells like ADH (anti diuretic hormone) . With this injection it allows for the opportunity to possibly use radiation.There has been so much back and forth about treatments but after I spoke with my Surgeon and Radiation Oncologist and local oncologist we all decided it would be best to get back to Mayo ASAP. My sodium finally Stabilized and we were able to get home Wednesday afternoon.

Its been a whirlwind. I think its Thursday? Jk. On Thursday mornings I'm usually out with my running partner and fellow cancer survivor MaryJo getting in our typical “Thursday 14k” lol. Instead we arrived in Rochester, MN home of the “Ear of corn water tower” (no joke look it up) Its all very familiar to Eric and I by this point. Can't believe we were here 52 weeks ago….. same week one year later. My appointment with radiation oncology is today and then We will set up appointments with Dr Dimou to look at all options they can think of. In the meantime, it goes without saying. Please ignore grammar errors and keep praying ☺️

Chapter 2: Sucker Punched

 “Everybody has a plan until they get punched in the face”- Mike Tyson

I never thought this was how Chapter two of my blog would go. So sit back, definitely get a drink, and kick up your feet this will be a long entry. 

About two weeks ago I noticed my weight was changing, with the voices of the doctors from last year always in my head, I knew that at any sign of my sodium dropping I should get it checked. On Wednesday, at work, I ordered a BMP on myself. The next morning Dr Shur Allen called to let me know my sodium was down to 130. I immediately called Mayo and in less than an hour I heard back. To make a long story short they advised me to contact my local oncologist and discussed returning to MN for scans and some appointments. By Thursday evening I had been for repeat blood work and had appointments scheduled at Mayo for Tuesday. We waited all day for the oncologist to call with lab results but they never did. We spent a couple hours next door on Friday evening with our friends Rafe and Michelle (Rafe is the Thoracic surgeon) we were able to discuss the labs, my history and our plan. that evening I became really nauseous overnight and Saturday morning Eric and Rafe formulated a plan for me to get checked out VIP style. At 10am Rafe had me go to his hospital for labs through the ER by 11:15 I had labs, was admitted and in a room. What I was convinced or maybe just hopeful was a “lab error” proved my labs were in fact another bout with SIADH. My sodium had dropped to 121. Things moved quickly and By 2pm Saturday I had an MRI of the brain and a CT of chest, abdomen and pelvis. All were clear which was SUPER and In theory that would mean the cancer was not large enough or in multiple spots to be missed with routine images. Throughout the day my sodium stayed at 121, dropped to 120 and at 10pm crawled up to 124. 

The initial plan was to get a Dotatate PET ASAP and get me stable enough to fly to MN. It all seemed reasonable and possible until Sunday morning when my sodium trended from 124 to 122. Sunday was more chasing the sodium bottom line, I got up to 6Grams of sodium, restricted fluids lasix and Urea Powder and managed to stay around 123. By Sunday evening we had to cancel our flights to MN since I was not stable enough to fly. Monday, after another long day and after a lot of admin run around and a massive amount of finagling, Rafe Was able to get the PET scheduled inpatient that night.

Here comes the punch in the face……. The cancer came back and was found in my cervical spine (C7) my right upper chest and my left proximal femur. Yes, three spots. WTF right?!?! I know! Sooooo many question?  Yeah, me too! It was the worst fucking news ever. I was prepared for one small spot but three? And what the shit are they doing in my bones? It was all thoughts! All of them!! Ugh. The only glimmer of good news is that the scan was done at the end of the day and I was somewhere where Ativan was available to take at bed to knock me out. It was honestly the best sleep I had in days. Tuesday came and (insert extremely long pause, hard swallow and deep exhale) that will go down as one of the worst days of my life. 

The morning started off when my oncologist came into the hospital room, pulled up a chair and sat down at 7:30am. The words were clear and harsh and had so many fillers. Back, multiple spots, not surgical, there will not be treatment to cure, we have limited treatment options available because of polysorbate allergy, will return again- and when asked for just a little hope the answer was “I'm sorry.” Obviously there was a lot said that I'm sure no one wants to hear as much as I don't want to relive, so I will spare you the gut wrenching details. Telling my friends and family were difficult but telling Dylan and Rylie, there are no words. I hope with every breath in my soul not ONE of you ever has to have this talk with your children. 

Wednesday started off as good as any day after your “most worst day ever” could- with a pounding headache! As if I didnt have enough salt problems- I just cried a river of salty tears for 24 hours. 

I want to end there for now because I just really needed to get the “word” out so the prayers could start. There is Much Much more to say and I will fill in the end of this entry soon. In the meantime, until I have the emotional and physical energy (as well as another device other than my phone to type on) please allow me to be selfish for a minute and ask you/ beg you to ask everyone you know to put me on top of their prayer list if even for just a day. I will fight this along side of my army!!!!!!!