Rain, Radiation, Reality

Hello 11.8.18

You know that song… “It Never Rains in Southern California”
Yep, it rarely rains when it “should” in drought stricken, fire ravaged CA , but when it does, it’s on days when super important things happen in my life,.. LIKE MY FIRST RADIATION APPOINTMENT!!

And yep, not at my local, close by medical center either… And, my luck,… my appointment was first thing in the morning, which is super challenging (in many ways) for me ANYWAY, but especially on a raining buckets day, that requires battling the crazy LA freeway drivers!!  You’ll see below in an email, that my Dr asked me not to cancel (lol she knows me too well!). Very sweet, but also reading between the lines… tells me how “serious” my situation is. Yes, rain or shine, I need to go, I kept telling myself.

I just cannot get over all the “little” challenges and ironies in my life…  (Yes, whine, whine, whine I whine… :)) But I keep it all in perspective, and ALWAYS remind myself how LUCKY I am to have all the good fortune I do on so many levels… compared to so many… But yes, I do still allow myself a few “pity parties” here and there :))

If you’ve been following my story for a while, or know me personally, you know that myeloma and treatments really changed my lower GI system…., Really really changed it, and made it super unpredictable!… so that’s why “early mornings” are particularly challenging for me, as I won’t get on the freeway, or drive too far from my house (specifically my bathroom), when my GI system is unsettled or not “cleared”. In other words…. I never want to take the chance that I’ll be on a freeway when my body decides to “cleanse”!

Unfortunately the scheduling and procedures for the initial Radiation appointment consult, mapping and first treatment is not very flexible, and of course landed on a Thursday, which often is my “worst chemo crash day”. For some time now, I take all my meds on Mondays: 40mg Dex, which is 10 steroid pills, then 1 Velcade shot in the belly at the chemo lab, then at home, 8 Cytoxan pills at 50mg each, which is 400mg!!. Lol, that’s a lot of meds, right! So by mid to late Wednesdays, and for sure Thursdays, I’m feeling kinda yucky and what my GI has in store for me, I never know!! Unlike Revlimid, which gave me scary, unpredictable, often volcanic diarrhea, this current cocktail often “corks” me up, and I never know if and when the “cleanse” will happen. So if I have early morning appointments, I make sure the day/night before, I don’t eat much, or I eat early, and “hope for the best in the morning”… and for sure… I DON’T EAT OR DRINK BEFORE GETTING ON THE FREEWAY!!! Ugh, it’s all so complicated, and so funny, as “normal people” really don’t give these things a thought. But I sure do, as I’ve had too many close calls, and near disasters, almost not making it home or to a bathroom in time!!!!  If you want to read some funny “close call” stories, look back in my blog post titles back in 2013, 2014, 2015

But I braved up, and accepted the crazy timing of all of this, and the rain, and had my wonderful son Scott pick me up at 7:15am to hopefully make it to the 9:00am appointment.

So sweet my Dr did not want me to cancel
She knows me too well :))

It was totally pouring rain when we left. I had Scott drive his big work truck, so we’d have more metal around us, protecting us from all the crazy CA drivers, that just don’t know how to safely drive on rain slick freeways. But I’ve learned to just let go, and let things happen, and hope for the best. After 9 years of battling myeloma, with so much out of my control, what’s a little rain and freeway insanity. We made it there and back, without getting involved in any of the many accidents we saw, including overturned cars, as well as the car right in front of us, in the carpool lane, dying, coming to a complete stop. Thank goodness we were the vehicle right behind him, as you can imagine a what a traffic nightmare a completely stalled car created behind us!! Scott does so much freeway driving now, it wasn’t a big deal to him. So fun to experience the role reversal now in our lives, with our adult kids taking care of us now!

So to make a long day, long story short, we first met with the Radiology Technician. Such a wonderful caring man, who explained the whole process in detail, took more scans of me, marked me up with a red sharpie marker, explained I’d be getting about 5 marker tattoo dots, then the scans would be studied by my Dr, and she would make the final approval for where to Radiate, how much, and when, etc. We then met with my Dr, she discussed my situation in further detail. She brought up my scans, and showed me all my holes, lesions, tumors, etc. It’s all surreal to me. How can I, me, who used to be so active, have all these cancerous things in my bones? Lesions all up my spine. Lesions in my ribs, hips, femurs, pelvis, hips, etc etc etc. And a sizable plasmacytoma in my Sacrum, tailbone… this all must just be part of a looooooooong, crazy, never ending movie I’m in…. I just can’t relate to my situation, and I don’t know if I ever will…

Wow, really myeloma!!
Yes, these written reports do make it “real” to me
Can’t deny the damage when I see it like this
So after all the scans, mapping, discussion of where my “worst damage” and pain is, the decision was to Radiate my pelvic, hip area, my lower spine, and the crazy plasmacytoma in my sacrum. My Dr also confirmed that all my insane back, hip, pelvic, left leg pain in July, Aug, Sept, was most likely that nasty big plasmacytoma tumor pinching, putting pressure on my sciatic nerve, and surrounding areas. I’ll be glad to kill that thing off!!! And radiate the heck out of all the other areas where myeloma thinks it can remain cozy and comfy in my bones!
My new “office” for 5 days
Yep, this big amazing machine 
will Radiate me for 5 treatments.
First was on Thursday, 
then went back on Friday for #2,
the remaining 3, next week
I love Science. 
Not smart enough to understand how all this works,
But I trust my Oncology team, and all the 
Drs and Techs working on me!
Although I knew the answer, (and have asked previously), I asked my Radiology Oncologist if I really was “fragile like glass”, and shouldn’t do any of my favorite sporty activities, like horseback riding, skiing, tennis, etc,.. She nodded, and said, “yes it’s just too risky… you really shouldn’t”… I knew she felt bad confirming what I asked, and what I’ve known for quite some time. Can’t even remember when I last did any of those… well I can, but I don’t want to…
As I write this, I sipped some tea wrong, and coughed and sneezed, and of course braced myself, and hoped I wouldn’t fracture something like I’ve done so many times! Just awful to have to worry about all the “potentialities” of damage 24 7. But I’ve experienced the excruciating pain from inadvertently injuring myself all too many times, and take all the precautions I can, to not injure or damage myself again. I reflect back on all my posts, where I was suffering so much from what I thought was pulled muscles, pinched nerves, etc. Now I know that it was most likely fractures due to all the lesions I didn’t think were there… 
So that’s my Radiation story in short. It’s treatment number 10 thousand million trillion. In other words, I’ve had so many lines of treatment, chemos, etc, in the last almost 9 years, that I laugh at how much I’ve been through. One of these days I’ll add all it up. Myeloma is so different than most cancers, as the treatment is never ending, the damage is ongoing, and we as patients live moment to moment, hoping our current cocktails stave off myeloma for as long as possible. I feel like my life is on hold, yet at the same time, racing forward.

I’ll find out how Velcade Dex Cytoxan is doing for me in a few weeks, as my next “assessment” Dr appointment is Monday Dec 17. In the meantime, I down my dozens of pills, submit to weekly belly injections, and now to whatever the effects of Radiation are. Isn’t it amazing what the body can tolerate, and how all this stuff can keep us alive, albeit, temporarily. Myeloma is just so different than “curable” cancers. In my case, I must continually treat, or myeloma wins… 

Happy Holidays everyone. Hoping whatever your challenges are, you can still enjoy festivities with those you love and enjoy being with!