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Saturday, December 8, 2018

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!


  1. Thank you for your posts. You are an inspiration. Somehow, you’re able to take this serious matter and make parts of it quite amusing.

    I’ve been reading for three years. I’ve been really lucky so far. You’ve helped me stay more grounded.


    1. Hi Chip! Thank you so much for your kind comments, and letting me know you've been following my crazy myeloma adventures for 3 years now! And for appreciating my humor vs tragedy perspective. Yes, there's so much that's tragic about this journey, but so much that's funny, ironic, humorous, etc. Glad my posts have helped you, and please share your story with me!! Thank you Chip for your comments.

  2. Hi Julie,

    Thanks for the update. I hope the radiation eases your pain and stops the myeloma in its tracks!

    Good luck, and keep on keepin' on.

    You are, indeed, an inspiration for those of us who read your blog.

    1. Hi Ellen, thank you for your sweet comment. All of us on this myeloma journey are inspirational. As there are so many life stories out there of people making the best of lousy circumstances. I'm always struck by the challenges everywhere, with everyone. Thank you for following and commenting Ellen! :)) Hope you are doing well!!

  3. Hi Julie! Hope the treatments are going ok, glad you're able to move forward with them and hope they do the job of reducing symptoms and pain. Sending you and your husband hopes for strength and the ability to persevere! Keep going!

    1. Hi Bernadette! Thank you so much for your kind and supportive comment :)) Yes, we'll see how this goes, so far ok, and I'll share the radiation details on my 12.18.18 post. As for my hubby, so tragic, as he continues down hill, and fell on Friday night... so his drama continues. Just can't believe what happened to both of us, and this medical chaos we're in. But we make the best of it, and thank goodness for the great insurance we have, and our family help, and sweet support from friends like you :)) Hope you are doing well, and feeling ok!


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.