Really Body? What’s up with all this torture? What did I ever do to you to deserve this backlash? Remember,… at this time in my life, we were supposed to be PLAYING, winding down my career, and chillin for a change? I won’t even list all my mid-life, second half of my life goals and plans. It’s just waaaaay too sad. Never ever, did I ever think I’d be faced with all the challenges I am. Mine and my husband’s…
Everyone’s Myeloma, or chonic, incurable, forever illness attacks differently. Everyone handles illness, pain and challenges differently. Myeloma faked me out in the beginning. Faked everyone out who knew me and saw me in public. No one could ever understand how sick I was on the inside, and the intensity of the monster growing daily inside of me. I didn’t get it either or comprehend what “aggressive myeloma” meant back then. Now I do.
Immediately, after my Dec 30 2009 diagnosis, I was put on Dexamethasone steroids. Never had been on steroids in my life, so the fun ups, and the crazy downs, were a new ride for me. Back then, for a month, I started on 20mg 4 days on, 4 days off. But when when my Dr tried upping Revlimid from 10mg to 15mg, I developed the dreaded Revlimid body rash. So from February 2010 to end of May 2010, I was on 40mg of Dex, 4 days on, 4 days off. THAT’S 160mg OF STEROIDS PER WEEK FOR 4 MONTHS! Wow!!
As a result of this high dose, the many “typical myeloma side effects” remained “hidden” to me. And with all those steroids in me, Revlimid didn’t stand a chance of causing me “volcanic GI issues”, as the steroids corked me up! So thanks to steroids masking symptoms, I was thinking, “hey, this 70% myeloma cancer thing is “tolerable”, and I can still continue on being “Julie”” LOL LOL
I then had one dose of IV Cytoxan, which woke me up and made me FEEL LIKE A SICK CANCER PATIENT for 24 hours. But after that, I sailed through the Stem Cell Transplant prep, harvesting 9.5 million stem cells, and the first few days as an inpatient at City of Hope Hospital wasn’t bad at all. But midway through the process, when THE HIGH DOSE MELPHALAN CHEMO KICKED IN, I TRULY LEARNED WHAT A BEING A SUPER SICK CANCER PATIENT WAS ALL ABOUT. That was challenging beyond all words.
After my recovery in August and September, as I slowly crept back to beginning to feel like Julie again, and finding out that my SCT process was successful, I began to think I could put it all behind me, “and get back to my “normal” life again” LOL LOL. My son buzzed me October 1, 2010, and that was great symbolism of my new beginning! I remained on 5mg Revlimid maintenance for 2 years. I was very immune compromised, still extremely fatigued, and had GI issues, aches, pains, etc, but overall had a good quality of life that allowed me to get back to 50% of my life.
My Dr then wanted to try a “medication holiday”, so I went off maintenance Revlimid. Within a year Myeloma roared back, late (2013) and the rest is history.
For 7 years, any xray, or skeletal scan I did, showed NO BONE INVOLVEMENT. I was a little snarky about this, as I always thought “I was different”. Shame on me. Then my first visible lytic lesion was seen in my annual skeletal scan, April 2017. Of course it was a “Hole in my Head”!! A hole in my skull. Of course that’s where my first lesion was seen. My myeloma cells definitely have a sense of humor with me! I didn’t panic or worry, as me and my Drs seemed confident that was the “only one”.
But a year later, April 2018, I was sent for a full body Pet CT Scan. If you’ve been following my blog, you know the dramatic and shocking news that the results brought. I think my Drs have “regret”, or feel bad that none of my Drs had ever requested an earlier baseline Pet CT Scan for me. I’m a little upset it wasn’t done sooner, but then again, “Ignorance is Bliss”, and I lived for years thinking my bones were strong and “holeless”! My treatment meds probably wouldn’t have been any different, just that Zometa may have been introduced years ago? Who knows and I don’t look back with regrets, as perhaps not knowing this news, helped with my positive optimistic fighting attitude. Who knows if all my “INNUMERABLE” holes just grew in one year. Probably not possible. With the extensive amount of holes I have, and with terms on the scan result report mentioning something about lesions “treated”, I’ve most likely been “holey” for sometime now. Thinking back over the years, I do recall several Drs mentioning that I should probably do Zomenta.
WELL I DID, and ZOMETA I HATE YOU! I hate what you have done to me this past week. I hate the pain and suffering you caused me. I hate the awful, high fevers (101+, 102+, 103+ for 3 days), I had to endure. And I still have a fever over 99 daily, some days over 100! 8 days so far, with today’s reading, 100.9. I hate the awful, deep, painful, searing, pounding, slicing, piercing, electrical current pain you sent throughout my entire body, and weirdly all up and down my left side butt to lower leg. Crazy deep pain that drives me batty. I try to walk it out, stretch it out, sit it out, lay, lie it out, liniment it out, stamp it out, pound it out, pain pill it out, and it’s relentless! Especially at night…
I read all about the side effects.Talked to tons of myeloma patients about their Zometa experiences. I did all the right things to “prevent extreme side effects”. My infusion was 30 minutes long. My nurse did hydration before and after. I asked her to finish the rest of the bag, after Zometa was done. I hydrated like a fish. I always hydrate a lot. As a matter of fact, I’M SICK OF HYDRATING. I’m so tired of trying to do the right things, eat right, drink right, move right, blah blah blah. I did all the right things, AND I STILL HAD HORRIBLE SIDE EFFECTS, AND I STILL HAVE A FEVER, DAY 8! I still ache all over, and have a headache. I rarely get headaches. And when I move, I get surprising shocking twinges all of a sudden.
I am better, pain wise from a week ago for sure. A little more relief everyday. But yesterday, I knew in the middle of the night I still had a fever. When I took it, it was 99.8. Dang it! Thought I was done with fevers. But the fever yuckiness feeling is indisputable. Felt the same telltale signs again today… Yes, a Zometa fever for 8 days now.
Early yesterday, my husband had cataract surgery scheduled in the morning. I never feel well in the mornings anyway, and the fever was just complicating everything. Of course all week I “worried” that it was going on a week with a roller coaster fever, but each day I kept thinking it would disappear, and so would my awful symptoms. Tylenol and Advil of course masked the fever symptoms, and only when I let it’s affects wear off, did I know the “real truth” about my status. All this was not what I had heard, not what I had read, not what I expected regarding Zomenta infusions. Zometa is not supposed to be a “big deal”. It was a HUGE deal with me.
I worried about the length of time I’ve had a fever, so I had our super helper daughter go with Jim to his surgery, and I went to Urgent Care. They always apologize for the limitations of what they can do for me, as my situation is so complicated for Urgent Care, and I am always encouraged to go to ER instead. Um, Nope! Further away, I feel lousy, and waiting in ER! OMG, no thank you! I had a very caring UC Dr who set me up for many blood tests, bacteria tests, and a chest xray. She also contacted my Oncology Office, letting them know of my situation.
I was there for hours. Hours. I didn’t bring my pantry and refrigerator with me, so midway through, I’m starving. I did have enough water in my car, so I kept hydrated. Funny though how I was in eyesight of the Vending Machine, but yuck! All the human cooties on that, grossed me out, no matter how hungry I was!
My labs came back ok. Not much different than they “normally” are… EXCEPT my WBC was skyscraper HIGH (for me) of 6.8. Ok, for most of you, that’s normal, and good. My WBCs barely get out of the 2’s… so to me, something was up. Must be a crazy battle inside me. Having a strong WBC, wow, my cells must partying it up. I pictured the newly powered whites beating up the myeloma cells, and the Zometa in there fueling the fire. I thought hmmmm, wonder if all my EXTREME PAIN and fevers for a week was due to Zometa doing something “good”, powering up my system, infiltrating my bones, boosting up my plasma cells, and pummeling the myeloma cells?
My xray showed clear lungs, no pneumonia. Still waiting on the bacterial cultures. But I’m not worried. And thankfully my UC Dr did not want to give me antibiotics unnecessarily. I was beat up from being there for hours, but very appreciative for the quality care.
But I still have a fever…
So where does all this insanity leave me today, 8.18.18… still with a 99.4(am), 100.9(pm) fever, that of course varies with when I take Tylenol or Advil. The killer bone pain has subsided, but I tingle and get twinges all over. I feel weird feelings everywhere, even my teeth and jaw hurts periodically… great, here come’s ONJ, my greatest fear with Zometa.
Who knows why I had such an awful and excruciatingly painful reaction to it, but as I said in my previous post, I just don’t know if I can do it again… But, If, If, If, my myeloma labs I’ll do next week, (and then see at my July 30 appointment), show that Zometa had a dramatic affect… maybe, just maybe I may “elect” to SUFFER again in several months. And yes friends, I will grow up, and ask for stronger big girl Pain Meds!!! And to those that have mentioned Xgeva, I will inquire about that too. But for now I am just reveling in feeling a tiny bit, yes a tiny bit, better each hour!