Just be held

“Your worlds not falling apart its falling into place, Im on the throne stop holding on and just be held”  Song by Casting Crowns 

https://youtu.be/s53R3aj5pfc

Returning home from Mayo is always a bag of mixed emotions. Obviously I want to be home. Be close to kids, sleep in my own bed, do all the normal things. Leaving Mayo also comes with fear and anxiety. History has shown that things tend to change when we go home and this trip has remained consistent with history. We left Mayo one day after finishing Chemo and Immunotherapy and got home on Friday May 14.  Before chemo my sodium was 144 so we checked it prior to leaving and it was 135, given the drop we were advised to recheck on Wednesday and bada bing it was down to 131…..And so it began, the weight gain Tuesday- Wednesday up 2 pounds! I placed a call to Dr Dimou who was uncertain why but expressed some ideas to why there was a drop. He advised to keep at the same Tolvaptan dose, get some fluids in to push out chemo and prevent dehydration and recheck in 2 days. Despite being advised not to increase the tolvaptan, I did anyways- I already had before we talked so it was too late. My gut has been exceedingly accurate- 100% so far. And I am glad I trusted it……The nausea really hit hard Wednesday evening and by 3 am I felt like I did when I was on the cruise. 10 mg of compazine quickly followed by 8 mg of Zofran did not touch the nausea and by 7 am,  I was violently dry heaving in the shower and the scale said it all…..2 more pounds. The trend was consistent with a significant sodium drop.  Despite not wanting to go to the ED, I knew we had to go. 

Enter the ring leader!!!! Everyones heart always bursts with joy when I talk about how wonderful Rafe has been through all this. And they should- he's been a lifesaver.

Brianna (Rafe’s NP) met us in the ED and was able to get us back quickly. Bypassing a lot of the administrative part of hospital registration. She helped “carry” me through the halls, get changed, and distracted me with entertaining stories all while politely bossing everyone around to make shit get done faster😉😚

The dry heaving continued and the headaches set in- It was obvious that my sodium was dropping more and I was REALLY glad I went against doctors orders and increased my Tolvaptan! My sodium was down to 126 (which felt more like 116, and very well may have been that if I had not increased the dose!) Not only was the sodium low, my white blood cell count was 2 (normal 4-11) and my platelets were 89 (normal 140-440) Chemo was doing its thing! I actually never had either of those counts that low last year (just my neutrophils which is a part of WBC). SO GREAT……The trifecta…... Hyponatremic (low sodium), thrombocytopenic (low platelets) and neutropenic/leukopenia (low WBC)!

    Education moment:

    White Blood Cells: A type of blood cell that is made in the bone marrow and found in the blood and lymph tissue. White blood cells are part of the body’s immune system. They help the body fight infection and other diseases.

    Platelets: Platelets are made in your bone marrow along with your white and red blood cells. Your bone marrow is the spongy center inside your bones. Another name for platelets is thrombocytes. Platelets are tiny blood cells that help your body form clots to stop bleeding. If one of your blood vessels gets damaged, it sends out signals to the platelets. The platelets then rush to the site of damage and form a plug (clot) to fix the damage.

    Possible reason behind the Sodium drop: Cancer cell destruction and surge of ADH…New tumors….. Chemo not affective yet…..to be continued

Over the next few days my sodium “stabilized” and now ranges between 132- 136. I'm on an a full tablet of tolvaptan, 3 grams NaCL and an injection for my white count but that continues to drop and is now 0.7. I'm on hospital room “lockdown”. Visitors are limited and they have to “scrub in” and wear a mask. But my dazzle has been superior as always. They come to keep me company even if it is just to watch me sleep. They have all been great at keeping my spirits up.

I am feeling pretty decent now so I've made the most of my lockdown and created a workout circuit in my room yesterday! Scared the nurse half to death when she came in and saw my on the floor stretching pretty sure she thought I had fallen and couldn't get up. Today Rafe gave me permission to get outside and get some Vit D which helped lift my spirits….. after fresh air and a short walk, everything seems just a little easier.

I just had a repeat MRI of my left femur (the one surgery is scheduled for next week) and an MRI of my Lower spine. Not expecting those results back this evening. There was talk of getting a Pet done this week sometime, but that remains unclear. Our hope is that there was a surge of ADH following the destruction of cancer cells post chemo treatment and that is what caused my drop in sodium. We will know more during the course of the week……And I just found out Rafe is discharging me home tonight!!!!! Finally Some Good News! I will Follow up with Franzman Tuesday and head back to Mayo on Sunday. Time to pack my bags!

MRI results: The MRI results are, discouraging. There are now tumors at all Lumbar levels and upper sacrum. Rafe is talking with Mayo….. Dr Olivier is presenting new info to tumor board at Mayo on Tuesday. I have no other info. Prayers are needed more than ever.

We have just told the kids and now I have to vomit. Of course Im going to continue to fight with every breath I have…… i just have to to catch it first. I will update when I know more.

Chemo Cycle 1

If you have faith the size of a mustard seed you will tell this mountain, ‘Move from here to there’ and it will move and nothing will be impossible for you ~ Matthew 17:20

God of Power and might, let me place all my trust in you. Strengthen my faith and deepen my hope that you may be able to bring about the wonderful things you want to do for me.  (This prayer was written in my daily prayer book and I read it on Feb 8 while I was in the hospital, I think of it all the time)

 So here we are, Mothers Day, well it was when I started this update anyway….clearly it is not Mothers Day…...anyway,  I am laying in bed looking at the pile of clothes in the corner of my room that have been in and out of a suitcase three times already since February and it's time to pack again. Eric and I head out on Monday to start chemo and there is still so much up in the air. Insurance has not approved Immunotherapy yet at Mayo and has been completely denied here at home. The reason is that they just wont think outside of the box! We are waiting on Dr Dimou to do a peer to peer and that does not guarantee anything. He and Dr Olivier are confident it will get covered at Mayo; we just have to play the insurance game. Dr Franzman (local oncologist) did a peer to peer and it was still denied. We should know more when we get back to MN.  Eric is not worried about it, and honestly I just dont waste my energy fretting about things anymore. We have become accustomed to the flexibility this all requires of us! I mean let's face it we now book only one way flights to MN since we have no idea how long we will be there. Insurance coverage, sodium level, flight arrangements, care plan changes, Everything changes daily and we all have to learn to you just take it!

Its been great to be home for a couple weeks to recover from Radiation but it certainly was not as much of a “fun” and morale boosting “vacation” home to the beach like when we came back for Dylans birthday. A few days after we got back from our Radiation trip, I began to notice a tightness in my throat. Convinced, or maybe hopeful,  it was simply Virginia allergies giving me a one two punch I started taking some Allegra. By the third day I realized that this was not allergies. As I cringed swallowing a sip of water I placed my hand at the bottom of my throat where the pain was the worst and realized this was the same area that treated my C7 tumor with radiation. It was Esophogitis. The radiation fried my esophagus and it was time for me to complain. A lot!  The pain worsened everyday and I was suffocated by the physical and emotional discomfort this was causing. It was so just in my face! Every breath, every swallow felt like I was shoving a razor blade marble down a sand paper straw.Then add in the NaCl tablets I was back on and it was literally salt in the wounds. Combine all that with the excessive fatigue from high dose radiation therapy and I was miserable. Miserable. Did I mention I was miserable. Finally after 2 weeks, treatment with Clacks solution 4 times a day, a steroid dose pack and some other throat rinse, I started turning the corner on Friday. Just in time for the next punch. 

Finally being able to eat and drink boosted my energy level and despite feeling pretty good, the scale was telling me a different story. Overnight there was a 1 pound gain, then 2.5 pounds the day, and a couple more ounces the next…...It was the tell….. ADH was in overdrive again! Which did not make any sense. My levels had been steadily increasing since radiation was completed and just the week prior I was normal at 142. I could tell also based on my lack of endurance in the pool Friday that things had gone array. Went for bloodwork after my swim and just like that my sodium was down to 132, a ten point drop in 10 days. So what does that mean, well that's just another variable. I had already been texting with Dr Olivier in regards to my esophagitis and how supper exciting it was to eat some sunny side eggs Friday morning for breakfast. Then just like that, a couple hours later, we were all in panic mode. The drop could be from not eating or drinking for over a week or it could be new tumors. Dr Olivier hypothesizes that maybe some of the radiated cells have not died off yet. Regardless we have to get this chemo underway QUICKLY. Fortunately this starts Tuesday! Let the next phase begin. 

So we arrived Monday evening and hit the ground running Tuesday. Yesterday We met with Dr. Dimou and discussed the treatment plans. We also reviewed a new finding from the bone biopsy.  One of the stains from the tumor biopsy showed more evidence that the cancer is not acting like a typical small cell.  This is good news and great information for the future study and research on Thymic Small cell. Really good news is that he got Immunotherapy approved and covered by insurance. It will start tomorrow (Thursday, day three of cycle 1 chemo) and be given one day with each round of chemotherapy and then once a month upon the completion of chemo. It is hopefully  a long-term treatment for as long as I can tolerate it. The doctors are cautiously optimistic about my body's ability to let  immunotherapy do its job. This can be real game change in treatment of this cancer.  

Chemo day 1 was uneventful. Thank God it was nothing like last year. The Carboplatin is given much quicker than the cisplatin was and does not require pre and post fluids so treatments should not take as long as they did last time. The Etoposide Phosphate is preservative free so I can get this IV this time as opposed to orally last year. Aside from fatigue there were no initial side effects. Tomorrow will just be Etoposide so will be even quicker. I have Michelle and Eric here which is go great. Even if we all just watch a movie its nice to have them in the room with me. Not looking forward to doing this alone at home.

We met Dr. Rose, the oncological orthopedic surgeon, today.  He is very tall, in stark contrast to his good friend, Dr. Oliver. 😂 He has no place on the “team” being that tall but we are going to have to let him join! He was very thorough and super nice. He recommends putting the rod in my femur between chemo rounds 1 and 2.  This is based on a couple of things.  First, the high dose radiation that I just underwent increases the risk of fracture.  Second, because I live an active lifestyle there is also a greater risk of fracture.  Third, we have to be conscientious of timing.  Doing the surgery now means doing it under “our”

terms in a controlled fashion.  If we delay and the bone does fracture, we would be doing the surgery under much less optimal circumstances and the surgery would be much riskier.  Also, if the bone fractured during a round of chemotherapy it could be catastrophic.  That being said, in consultation with Dr. Dimou and Dr. Oliver, surgery is scheduled for June 1 and Eric will have me in a bubble until then.   Obviously all this is subject to change based on my immune system recovery from this round of chemotherapy but we are praying that all goes well and things move according to schedule. 

Housekeeping…… We have changed the weekly prayer to monthly and will resume that June 4. I want everyone to enjoy summer fun and not worry about logging on for 7pm prayer but ask- as always- to continue to pray. Michelle made a good observation that Ascension Thursday is tomorrow and will be the last day of the first round of chemo…..Lets ask Jesus to make sure he takes my cancer cells with him when he leaves shall we???? 

Dr. Olivier text me this after my last visit two weeks ago. 

It is a spot on and humorous approach to what its like to have cancer and I wanted to put it here so I could always find and read it when I need a good laugh or encouragement. I think it sheds a little light on things that supports go through too.

(https://somehedgehog.tumblr.com/post/119415185391/cancer-the-mountain-lion-in-your-fridge/amp?__twitter_impression=true)