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.