Radiology Consult, Pills and more Pills, My Myeloma Life

Hello 11.28.18

And the anniversary countdown begins. Well it’s already begun, as this time of year, I can’t help but think of what I DIDN’T KNOW THIS TIME 9 YEARS AGO! Yes, Wow, 9 years ago, I was in the process of being diagnosed with Multiple Myeloma. Multiple Who? Multiple What? Myeloma? Not MY-eloma! Yes, MY-eloma. Crazy, random, incurable Myeloma became my new identity 9 years ago 12.30.2009…

But this time, 9 years ago, I just thought I was extremely exhausted and fatigued from working and doing too much. That I was “only” anemic, weak, breathless. I just thought my crazy bleeding out was because of “allergies”, and “that time of life for women”…  I thought all my other “weird” symptoms were just “temporary” weird feelings from “getting older”, as I had just turned 50. ahahahaaaa….. I was so naive, so ignorant, so in denial. But of course I was. I was always healthy, and there wasn’t any cancer in my immediate family. So I never gave my symptoms “serious” thoughts! December brought many appointments in medical departments I never ever would have connected to me!!!

I’m leaving soon for another Radiology consult, planning appointment. So I will continue my story later today… Fortunately, my extreme bone pain has subsided a bit. Still there. But not the intensity of July, August, September! I never want to feel that way again… but who knows what Myeloma has in store for me…. Looking into that “crystal ball” may not be good a idea, if we can’t alter the outcome, right?!

CT scan day after my birthday
I’ve had so many scans and xrays this year
that I am probably radioactive by now :))
Hello 10 Dexamethasone steroids,
8 Cytoxan, Cyclophosphamide pills-
every Monday
Along with daily Acyclovir,
daily Mepron (Atovaquone),
And B12, D3, low dose Aspirin
I need to take a picture of all of my colorful pills!
Ok, I’ll be back to update you with what the Radiology doctor recommends for my holey, lesions, tumorous bones!

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So I met with a very nice and knowledgeable Radiology Oncologist today, who noted that I have so many lesions, holes, plasmacytomas etc, that “we can’t radiate your whole body” lol …. “fortunately most of them are smallish, but the concerning ones (larger) are in your spine, sacrum, hips, pelvis, etc, where you are experiencing all your pain” …. and yes, the horrible, horrendous, shocking, debilitating, pain I experienced in July, Aug, Sept, was related to pinched nerves from the spinal tumors, etc. Radiation for myeloma is often referred to as “spot welding” lol

Unfortunately, the CT scan report was not processed yet for her viewing today, as I had the scan the day after Thanksgiving, at private radiology lab, outside of Kaiser, so they are waiting to connect all the dots. Fortunately, the CT technician had given me a CD copy of the CT scan, so I passed that on to my radiology oncology doctor today. This happened as my appointment today was bumped up a week, from a previously scheduled appointment for next Wednesday. I’m not upset that the report wasn’t available, as the holiday weekend complicated things, as well as the earlier appointment, as well as using an outside of Kaiser lab.

After almost 9 years of this crazy adventure, I hardly get bothered by much, as Kaiser is so good at providing services, and getting things where they should be, when they should. I’ve always received my specialized chemo (pill) deliveries expedited, accommodations for appointments are always made, the staff is always so friendly, caring and quick to fix any issues that come up. In other words, I have been very very fortunate to have amazing care from all perspectives- doctors, nurses, staff, pharmacy, etc! And I won’t even mention how unbelievable my insurance coverage is, as my heart breaks for so many patients I read about that have lousy coverage, or super high copays…

So the next step is a multiple appointment, hours long analysis, mapping of where I will receive the radiation.

Yep, myeloma eating up my bones, causing holes, tumors, lesions and pain, is all too real. I just still can’t connect all this with me. I always feel like I’m consulting with “colleagues” regarding someone else.

Can you believe I’ve been writing about all my adventures for 8, going on 9 years now, and that I was told “something very serious was wrong” with me, way back in November 2009. How crazy is that!!! Yep, Myeloma is the “gift that keeps on giving”… forever and ever… continuous treatment, no breaks… unbelievable how my life has changed…

Hope all is good for all of you, and if you’re a warrior buddy, your treatments are livable and effective. I always love to hear your status, treatments, side effects, and how you’re doing, so never hesitate to comment! Thank you everyone for all your good wishes, support and comments!

Goodbye November, see you in December friends!