Wholly Holes! Still Processing My Whole News

Hello 5.18.18

Thank you everyone for reading, commenting and caring as you do. I write for me, for you, for everyone, anyone, that may benefit from my myeloma journey, medically and psychologically. I write because This Is My Life. Myeloma has taken over my life for 8+ years. Symptoms, side effects, medications, treatments, appointments, extreme fatigue, my thoughts… I write because it helps me process what I am going through. I write because I enjoy sharing my life, my challenges, my struggles, my successes, my myeloma realities,… sharing with anyone that chances upon this Blog. I write because this Blog will be my written Legacy, living on and on and on, beyond me one day…

Denial is my middle name
I’m so silly… thinking this machine, this PET CT Scan
wouldn’t show much… Ha! on me…
And of course, it’s a perfect “hole” shape :))

Yes, Holes. Lytic Lesions. Holes, “Innumerable” holes, through out my “axial and appendicular skeleton”, the report states. I am still stunned and surprised. Shocked. Disbelief. Incredulous. Confused. Sad. Mad. Angry. Betrayed. But mostly Disbelief. How? When? How can this be? Has Myeloma always been eating me up alive? Is this recent? Or has this been since 2009? I have always been a “Why” person, and I will never stop wondering Why about most everything. Just who I am. And I accept that I will only have answers to the “Why”, maybe 50% of the time, if I’m lucky.

I read about Myeloma all the time. I want to know, be informed, be in the information loop. But I am not a Scientist or Medical Researcher, Doctor, Nurse, or Pharmacist. I’m a deep thinker, a Psychologist, Counselor. I want to know as much as I can, about all the things I’m fascinated by. But Myeloma has stumped me. I still, after 8+ years, I still don’t understand Myeloma. I can’t fully process the intricate Anatomy and Physiology of our bodies. Trying to understand Myeloma from a Biological, Chemistry perspective, is frankly over my head, and beyond my advanced education that I do have.

But I read, read, read. I’ve been looking at Skeltons. At anatomy pictures, charts, diagrams. I’m trying to figure out where all my Holes are. I want to know what these Holes look like from the inside. I want to understand how Myeloma grew all these Lytic Lesions inside me. I keep mumbling “Holes” to myself. Omg, I have Holes in my bones. Innumerable Holes. I have Holes in my Skeleton. Holes. I’m a Holey Skeleton. My bones have Holes. Cancerous Holes. Cancer in my bones. Holes that have cancer. Myeloma Cancer ate Holes in my Bones. Holes. Innumerable…

I took this picture just before the Scan began. You know me, silly, making light of things, thinking “oh this won’t show much, but what an interesting medical adventure it is!” I had no idea the irony of the circular shape of the Scan machine! It’s a giant Hole. Oh so ironic right! The machine that found my skeletal Holes, is a Hole. A medical Hole I go through to find my Lytic Lesion Holes. Ah, can you believe this! Honestly, I never ever really thought this Hole machine would find so many Holes in me. If you haven’t seen the written diagnostic results report, I posted it for your viewing pleasure on my previous, 5.9.18 post.

I received the CD of my PET/CT Scan picture results yesterday. I can’t figure out all the data and views. Omg. Each time I click, there were images in the images in the images. I saw my body in various forms. Some views looked like Aliens invading. Some views look like the Stellar System, like Outer Space, like the view of millions of stars coming at you. I saw my spine, my whole body and weird unidentifiable body parts. What is all this? Medical professionals are sooooo smart. I have such respect for all the knowledge everyone in the medical field has. They all look at this, and know exactly what it is. Wow! For sure, at my next Dr appointment, I will have my Dr go over my Scan pictures. Perhaps she can help me find a simpleton picture of my Holes.

I heard Sugar cures cancer, right? ;)
Thanks to all my meds, I really don’t desire sweets.
A week ago, Friday May 11th, was my 7th City of Hope Stem Cell Transplant reunion. 7 years, 10 months ago I was hospitalized at COH for a month, for my SCT. Yes I was there a month due to complications from my Hickman Catheter becoming horribly infected. It’s a crazy story, that I’ve shared before, but basically it happened because I was too confident that I was so different, so strong, that germs couldn’t invade my system, so I didn’t follow of the directions of how to keep the insertion point in my chest covered properly. So when my immune system completely plummeted as expected, (officially called Nadir), from the high dose Melphalan chemo, I didn’t have the immune power to fight off the cooties, and wow, did I get sick. They soon did “emergency beside surgery” to remove it, and I was on 5, 6, 7, antibiotics at a time to fight off this horrible Staphylococcus Aureus that attacked me! See, even from the beginning, I have never really accepted myeloma, and that I have a deadly incurable cancer. I always thought it would be different for me. Ha!

There’s my room for all of July 2010

My neighbor Gary, who also has Myeloma, his wife and I celebrated our almost 8 year Stem Cell Transplant anniversary at City of Hope last week. Thousands of people there. Just amazing all the families, all the lives saved, … and then those that were not… so many lives represented… We are the lucky ones! 
Yes, Gary is my neighbor, and we both have Myeloma. Get that! He was diagnosed about 6 months after me, and had his SCT about 6 months after me, both of us in 2010. Gary’s about 12 years older than me. I am IgA. He’s IgG, Light Chain type myeloma. We have the same medical team, similar treatments, and we are both 8 year survivors. And Neighbors. Isn’t that crazy! We attend our regional Myeloma support group together also. And when metal mouth from meds and steroids have calmed down, and we don’t have GI issues, or we’re not too fatigued or sick, we even go out to eat together! Neighbors and Myeloma buddies! What a lovely combination!

Sweetest couple ever!

Today, I’m headed to the Dentist, as so ironically, I had pre-planned dental work scheduled PRIOR to knowing about my Lytic Lesion Holes. Crazy timing, yes. I have a cracked tooth, that I suspect was a result of me tripping and falling into one of our horse poopy containers, and slamming my FACE onto the rim of the trash container, before going head first in!!! Remember that crazy, ridiculous story! I’ll find it, and link it here for your entertainment again…. So the plan is to drill down the tooth, clear out any decay, and cap it off. My Dr has me pre-medicating with Clindamycin, to prevent a bacterial infection. Previously, I was reluctant to do what I thought was “unnecessary” antibiotics, but after being so sick so often, I’m on board now :)) Down the hatch 2 pills went, no problem. 
And YES….., I have decided to do the Zometa treatments to strengthen my bones, and hopefully fill the Holes, and prevent new ones. Ha! I don’t know if Zometa is that magical… I’ll begin probably in late June, after my dental work today and again in a few weeks. I will for sure only agree to it every 3 or 4 months, and will make sure to do a very sloooooooow infusion, and hydrate a lot. Thank you everyone, and fellow myeloma warrior Ellen, for your kind and informative comments!!

And that’s where it’s at today May 18, 2018. My mind is still reeling from all the news, and my eyes want to see these stikin Holes on the scan pictures… Still processing the word “INNUMERABLE”…  that’s sure a wake up call… “Innumerable lytic lesions throughout the axial and appendicular skeleton…” Holes. Innumerable Holes, has taken over my silent mental vocabulary.

We had a low key, but very fun Mother’s Day. I feel loved every day, and Myeloma can’t steal that from me. Hope all the mom’s reading this, had a lovely day too.

The Fab 5! 
They are my life!
Our roses are incredible this year!
So much beauty, heals my soul
And the beautiful sweet scents are just amazing!

“Innumerable” roses :))

City of Hope
Thank you for my very successful July 2010 Stem Cell Transplant
So now… it’s all about obsessing on When, How, Where my Holey bones will crack, fracture, break.. Where’s T9 anyway? Will I break my Clavicle turning in bed one night? Where is my right Scapular Spine lesion? Will I cough wrong, move wrong and break ribs # 3 and 8? Where’s my left Sacral Lunency? Will my left Femoral Plateau crack and break, or plunge off a cliff? Or my Proximal Tibia? Or my Hypermetabolic lesions do something hyper. Or the Osseous lesions, do whatever they do? And of course, what would all this be without my lesion in my Skull… my oh so ironic Hole in my Head!! My brains will seep out… 
Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can