HEALTH UPDATE: Many unknown questions waiting for answers at this time. Last week consisted of a visit to Integrated Health, Imaging/Radiology for the crazy scan and MRI and Genetic Counseling. We are waiting for the full explanation of my crazy scan and genetic tests. Next week Wednesday is spa day. I’ve been feeling worse this last round but it’s manageable.
My health updates are stretching out into ramblings so I shortened that up so those that just want to know what is going on without having to read through my ramblings can do so.
I started last week with a visit to Integrated Heath. It’s a mind and body type clinic. The doctor, a young man with a smile for miles, greeted me in the waiting room with a hug. We talked and talked. OKAY! I rambled! He said I’ve got some great things going for me with this blog. He also recommended some easy to do at home massage techniques and other ways of relaxing. I nearly fell asleep at the appointment. It was so calming. Wish I could sit in his office for a few days.
Tuesday I had the MRI/Dotatate Scan/PTScan. Woah, woah, woah, WOAH!!! That machine is crazy. I felt like I was in a movie…or maybe heaven. I’ve got headphones on. Led Zeppelin “All of my love” is playing loudly. I told myself, don’t open your eyes! You don’t know if you are claustrophobic. I opened my eyes. Didn’t bother me at all. Okay, truth be told, I took two magic pills for calming. Music playing. Nothing but white all around. Surreal. Then the noise. REALLY loud bang! eeeeeeeeeee! weeeee oooooo weeeeee eeeooo bang bang bang bang in quick succession. It was like a fire truck party during the “who has the loudest horn” contest all at a construction site, on crack! What on earth could make such a noise? Oh well. It was yet another adventure. Besides getting movie butt at the end (my butt always hurts if I sit too long. I can always tell it’s a good movie if I don’t get movie butt) it was fine and interesting.
Thursday I went to the genetic counselor. She blew me away. She was so kind to us, is so smart and was born to explain gene mutations. We talked a long while of my family health history. They took blood for testing and now we wait several weeks to see if the mutations are in my blood as well as my tumor.
I wasn’t notified but turns out my oncologist was out last week and so I never received a call about my crazy scan results all week. I ended up checking in on Friday and the doctor covering offered limited information about my results. It’s really good news. I was scanned head to toe and there is no other cancer anywhere!!!!! Tumor monster is “stable”. I’m so happy it’s not worse. There was also a slight “glow” which indicates there are possibly some neuroendocrine cells in the tumor monster. He didn’t interpret. I need to talk to Dr. Evans and I know he is working on getting all the information. Still need to wait to see if I have a COLLISION TUMOR!!!!!!!
Next week is spa day on Wednesday. I imagine we will finally discuss my crazy scan. As treatment progresses, I feel less myself. To say it bluntly, I’ve been a piece of crap all week long. Tired, more tummy cramps than usual, tired, tingles, tired, tired, tired. I got my first Shamrock shake!!!! I took one sip and felt the pins in my throat from the cold sensitivity. I drank it anyways. About an hour later I threw up. I’ve thrown up worse things! It was great second time around! Ewww, sorry. I know I should not complain. I know so many other warriors are experiencing so much worse than me. I’ll be OKAY. The worst part is learning that my body cannot do what I want it to do some days. That is a tough reality.
Yesterday, sister Beth did it again. She cannot stop researching on my behalf. I love you Beth. You are amazing and my appreciation for your efforts on my behalf cannot be measured! Back story: Starting last summer I started getting bumps on my legs. They are like mosquito bites but can be as big as a grape. They don’t itch. They are just tender to the touch. They come an then go away in a few weeks. Then another comes and it goes away in a few weeks. I still have them coming and going! All on my legs below the knee. I asked my doctor what they were. Head scratch. Sent me to dermatology. Went to derm, head scratch. Take this steroid ointment and lets follow up in a month. No concerns of cancer but I don’t know what it is. At the time of follow up, bumps still there. More head scratching. Another follow up scheduled. No. Clue. Since then for kicks I’ve asked every single Doctor I’ve seen what they think they are. I’ve seen a lot of doctors if you consider my ER visits and stays in the hospital. Every single doctor has the same reaction. They touch it. Run their fingers over it. Look up at the ceiling with a puzzled expression and shrug their shoulders. It’s become a joke with me. Now when I meet a new doctor I say, bet you don’t know what these are! They don’t.
Lovely sister Beth knows.
They are caused from this damn cancer! I’m not going to get the terminology right but basically, they are caused by the release of what is called “lipase” by my pancreas (I think)…it’s coming from somewhere. Lipase and I do not have a good relationship. Normal range is 0-75ish. My level is at 8,500. They are using my lipase tests as a marker to see if the chemo is helping. Mystery solved. Thanks Beth. I love you!
Why did not one doctor take the time to help me? Countless doctors looked at it. Shrugged their shoulders and walked away. This was yet another indication of my disease back last summer. Maybe the cancer wasn’t in my vein last summer!! If one doctor could have taken the time to put all the pieces together I would be in a better situation with earlier intervention. I feel bad that I’m looking back. I promised myself early on I wouldn’t do that. We can’t change anything. But now it’s a matter of trust. How can I trust any doctor with my LIFE? My oncologist told me straight up that even if I do have a COLLISION tumor, she wouldn’t know what to do with the results because it’s so rare. It’s a hopeless feeling. I’m very disheartened and beyond upset. I have to get past this! Pronto!!
God is behind me. I can trust. I can love. I have faith. I know with all my heart that God is guiding me to where I need to go. Upstairs or down here. Nothing else matters. Sometimes I get so wrapped up into my situation and I forget about God. (I’m sorry, God). But it’s true! I am completely distracted and overwhelmed by this world and this situation! But then like a shooting star, my God is there to guide me. Thank you. I don’t know what I’d do without my faith in you.
Love and warm thoughts to each and every one of you! Cheers to a wonderful week ahead!