Holding Steady… Well Kinda…

11.7.17
Hello November!

Yes, it’s been a long and winding road…

The months roll forward, and I marvel at the progression, my progression. Not such a big deal to the “well person”, but to one who’s cellular clock is an internal ticking time bom…

Some Pretty Amazing News!

10.27.17

Hello and almost good-bye to October!
As the months fly by, I marvel they do. Who would have thought I’d still be alive. Sorry, I know I keep mentioning this, but in the Myeloma world, each day is a gift and a surprise.

Yes, I process my…

Keep Moving Forward … Always Forward Towards Accomplishment

9.27.17

Hello and almost Goodbye September!
Can’t believe I am almost to 8 years surviving Myeloma! I’ve really been focused on this, as Statistics at my Diagnosis, December 30.2009 predicted I wouldn’t still be here! Forward march I go… always! Always planning to live, while doubting I would. But always planning to. Each day, week, month, year surprises me I’m still here. Yet I expect it. I’m surprised to still be alive, yet I expect to be. I never assume tomorrow, but I hope for many tomorrows.

It was pointed out to me recently, that I really do represent someone that actually “lives in the moment”. Yes, I do. I really do. It’s all about what’s happening now… as who knows what Myeloma has planned for me. I don’t, do you? I just want to make the most of each day I am here. I want to continue to live life, breathe in life, hear life surrounding me, participate in life…
So on that note, I have a story for you, as I did just that… participate in life, sharing my life story with others.

Hello again-  it’s 9.28.17 now…
What a week. Chemo crash began yesterday from Tuesday’s Darzalex, combined with being in the middle of my 3 weeks of Pomalyst, and Monday and Tuesday’s Dex steroids. I’m just a Sloth without any helium today. But here’s my exciting story:

Monday, September 25, I presented my myeloma story at Amgen.
Awhile back, I joined a “cancer patient advocacy group” called “Voices of Experience”, where we are invited to share our story and treatment experiences related to Amgen’s oncology products. Amgen is pivotal in my life, as back in 2015-2016, the chemo/immunotherapy I was on, (Kyprolis), is developed and manufactured by Amgen, and Kyprolis saved my life. I was more than happy to share my successful journey with staff members, as I really have a passion to thank everyone involved in all my successful and life saving treatments thus far. I’m not sure how I found the VOE group, but I like to put myself out there to share my journey and experiences with anyone, or any group that wants to hear from me. Similar to sharing my life, via this blog.

As college counselor Julie, I presented to student groups often, but the idea of speaking to
all these smart bio-pharmaceutical business execs, pharmacists, oncologists, and researchers
was a bit intimidating, I have to admit. The anticipation of who, how
many, how will it go, will I be interesting, on point, intelligent
sounding and fluent, nearly did me in beforehand! But I have always believed we better ourselves and those we are connected to, by taking “self development risks”. Some may interpret “risks” as extreme sports, physical challenges, etc, but for me, it’s the mental challenges that I embrace and challenge myself with.

Prior to the speaking event, I had several phone consults with representatives of Voices of Experience and Amgen staff members, letting me know what to expect, perimeters of my presentation, etc. Everyone was kind, supportive and encouraging, and I accepted the challenge to share my crazy myeloma journey. But how to condense almost 8 years of medical treatments and the personal psychological details of an incurable cancer diagnosis, into a limited 15-30 minute presentation! I need hours to share this journey of mine I laughed.

So for a week prior, I formulated my presentation in my head, and jotted notes down. Basically, I had to condense this entire Blog into a limited speech. So much to share, so little time. One night, while brushing my teeth before bed, my whole presentation came to me, so I grabbed my phone, and wrote it out in minutes and emailed it to myself. So funny how those moments of inspiration come to us. Sunday prior to the Monday presentation, I reviewed and rewrote my thoughts out, but I am not the type to practice a speech. Never have. I sort out ideas in my head, gather my important thoughts together, and rely on my natural “wing it style”, and “no filter, shock ’em with zingers style”, to deliver my message with an impact.

Monday was a beautiful drive out there, and I met up with my gracious Amgen “host-agent” Kathryn. We had a chance to get to know one another via phone, over the past week, and shared our crazy cancer stories. What a survivor she is! And she’s still working and commuting. We laughed at our GI challenges, while trying to navigate “normal life” experiences. Such a wonderful lady, so honored to know her and have her guide me through this event!

Originally they thought the group could have been 100 -150, but as it
turned out only about 50ish, maybe more, I didn’t count…  so it felt like I was right back at COC. The meeting hall, auditorium, reminded me of some of the modern classrooms at COC… which pushed some buttons for me, as I sure do miss my days of Counselor Julie, welcoming students to college…

But as the staff filed in, and various people came up to say hello and introduce themselves, I felt right at home, and was happy I had accepted the invitation to share my story. Still quite “aware” of the “brainpower” in the room, and the brilliance of who all these people are, I worked on settling my old nerves of self doubt, and worked on “humanizing” the moment.

 Selfie time as staff files in

Voices of Experience created a lovely slide show
of pictures I sent them

They “miked me up” and off I went. I’m a very spontaneous speaker, not formal at all, very real and heart felt. I tried to buzz through my story, knowing the clock was ticking. What did I say? Basically, this whole blog lol, super condensed. I spoke much longer than they allotted me, and appreciated their sincere interest in my myeloma journey. If you’ve been following my blog and my deeper psychological musings, then you know the “flavor” of my talk. This is how I ended my presentation:

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“And finally, my last full body skeletal scan revealed myeloma is really
trying to eat me up from the inside out , as I now have a Hole In My Head, on the L side!! Yes, a Hole in my Head! My first Lytic Lesion, along with a hard tumor on the R side…
I continued on…

“Last
year, I asked my COH, SCT doctor point blank:

“ So Doc, how many Years would I have if I stopped all treatments, just decided I’d had enough of side effects and feeling yucky all the time, how many years would I have”…

He said ….. “Julie, you wouldn’t
have years, you would have months”…. 

“What??!! I thought maybe he didn’t hear
my question correctly…
So I restated it… emphasizing YEARS…

“He leaned in kindly to me and my husband, and said… “Julie, I’m not GOD, nor do I have a crystal ball, but without treatments, you would have months… how many months, we don’t know, but it would be months, not years… “

 And I concluded with:

“Thank
you, to all of you, for doing all that you
do, to help save the lives of cancer patients like myself. I’m alive because of
all of you and your colleagues! Thank you for listening and caring as you do! 

“My Counseling motto was: “Saving
The World, One Student At A Time…

Yours is: Saving The World, One Cancer
Patient At A Time…. 

Yes, all went well and moral to my story, take those risks, get out of your
comfort zone, push those personal boundaries … The risk is scary, the
challenge rewarding, and the outcome invigorating!

Make a difference
everyday, no matter how big or small! But get out there and make a difference. Better to try and know, rather
than let fear own you, as you’ll always wonder what could have been…
If you are Myeloma patient, or other cancer patient, or whatever your “challenge” or “success” is… get out there and share your story, as so many can benefit from what you have experienced medically and psychologically!
Our words are powerful, our thoughts important, your story matters!

Words I live by daily!
Thank you for checking in and caring as you do! 
I love comments, so I know who you are and what your life is!

Calm Waters, Rough Seas… Never a Dull Moment

Hello 9.17.17

And so IT continues…
I’ll be back with an update… GI sabotage…

Yes Life, You Never Let Me Be Bored!

9.18.17 Update: 
Never ever, stop laughing at life… I have to, to survive…
This morning, I woke up to a “kitty mess” in the “Cat Sanctuary”. See, all my
life I wanted to eventually open up an animal rescue. It would be a combined
animal and human rescue. A rejuvenation, healing center. Humans healing
animals. Animals healing humans. But life moved busily forward, and I devoted
my life to my family, my personal menagerie of rescued creatures, my career as
a college counselor, and just living life… until December 30, 2009, when I was
diagnosed with Multiple Myeloma. Life as I knew it, changed dramatically and forever, when I
came face to face with cancer and the realities of it’s life stealing elements.
But life continued, altered. Evolved, different, rearranged. 
I
have always had a moral and literal “forever obligation” to any creature that comes to
live with us, either by selection, adoption, or dropping from a nest. There are
those days now, especially treatment and steroid crash days, where I think I just can’t do this any longer. The chores, the messes, the needs of everyone here, demanding me, needing me,
all the while, me dealing with my own yucky physical side effects that sabotage me
so. The caregiving to others, when I need the care given to me, is often overwhelming. But I go deeper within. I go beyond my own suffering and look from the perspective
of those that have “not chosen” to come into our lives, and I know I must carry
on, carry forward for them, no matter what, no matter how awful I feel.
Today I was greeted with a very unappealing mess in the “Cat
Sanctuary”. If you have cats, you know what I am referring to. If you don’t,
well… put verbally sanitized… cats meticulously groom themselves. They
develop “hair balls”, and their biology then “gets rid” of “it”. Today, 2, maybe
all 3 of the cats, decorated the floor with their biology. Additionally, our 20
year old disabled, palsy, somewhat paralyzed, mentally crisp, quite amazing
cat in diapers, greeted me with his “mess” too.
I dreaded going in there. I didn’t feel like dealing with
it. But I knew I must. “Better get it over with Julie”, I urged myself on. “Remember… you always
wanted to open up an animal rescue sanctuary”. “Well, here you go. Just a very small
reminder of what a large operation would have been”, I laugh. I laugh at my
life. I must laugh at my life, or I’d cry each day. Can’t cry. Must move
forward every day. What happened to my life? Why was my life stolen from me?
“Carry on Julie, one foot in front of the other”, I continually admonish myself. “Move away from your woes,
your side effects, your diagnosis, you have so very much to be grateful for”, I reprimand myself. “Things could ALWAYS be so much worse”, I swallow the lump in my throat. And it IS for so many I know.
Myeloma incapacitates so many. “You are not Julie. You have so much to be grateful for”, I discipline myself!
 
 Charlene- shelter rescue at 12 years old
As I look at the mess on the floor, in the litter box, on my senior cat’s
diapers, I glove up and get to work. And then another kitty starts to heave! Another
lovely hair ball present for me…. I laugh… I shake my head in disbelief of what my life has become on so many levels. I laugh at what I got MY SELF in to years and years ago. They cannot
help their situation. They are cats. They haven’t a clue about cancer and how yucky I feel. I am human. I can process all of this
mentally. Forward Julie… I get to work cleaning. I laugh. I process. I shake my head as all of
this represents so much more than what it is literally.
   Luci- road rescue at a kitten
I am sick, I have incurable cancer, but thankfully I still can care for myself. I
am functional. I still have choices. The most dramatic awareness and reality check
for me is my senior cat in diapers… I am not, yet… I remind myself always, fearing for the future. My husband is not. We are still
“independent”. Our physiology has not stolen our ability to take care of our
basic needs. I am grateful. I smile. I pet the kitties, and laugh. They purr
their appreciation to me. I clean and clean. I change his diaper. I clean and
clean everywhere. I am grateful. My senior cat puts it all in perspective for me. 
 Binkx- now 20, shelter rescue in 1997

Last week I had my status check up Doctor appointment on Tuesday September 12. Most of the news was good. Protein Electrophoresis, M Protein, M Spike is still “undetectable”. Results show “abnormal”, but fortunately, that factor is still being suppressed by the Darzalex, Pomalyst, Dex steroid combination.

However, my IgA crept up a bit and that is worrisome. Especially since I began the new “once a month” dosing protocol, as directed by the Darzalex pharma developer. Confusing, but the established regimen is first, every week for the first 8 weeks. Then every other week for the next 8 weeks. Then on to monthly, which is where I am now. My type of “high risk IgA” myeloma treats fast, but also mutates fast and becomes refractory to each chemo, immunotherapy after about 9-10 months. So I am wary that the myeloma cells are beginning to overpower the healthy fighter cells, since they are not being continually bombarded… we’ll see what happens…

Overall, these are pretty good numbers, especially looking historically. But I am further out from the high end of normal range, and I don’t like it…

This past week, I only took 12mg of the 20mg Dex steroids. I was on my Pomalyst break, and also on the Darzalex break, so I thought, “let’s give this ol body a little further break”. Felt ok on Tues and Wed, then suddenly late Wed night, I developed an incredible headache. A killer headache. Not a migraine, as I’ve never had that torture, but a crazy slam me in head with a brick headache. And that lasted through Friday, and into Saturday, when I woke up. I canceled all the plans I had, as I also began lovely lower GI distress. Strange how recently I’ve been having my ol surprising volcanic diarrhea again. Hmmm…Killer headache, diarrhea again… what’s going on I wondered.

Slowly, with the help of Tylenol and Advil, my headache subsided. The GI stuff calmed down, but I was still unsure about what had happened to me. Thought I was getting a bug, but it wasn’t. I just couldn’t identify what happened. What a way to live. Feeling “sick” 4 to 5 days out of a 7 day week is pretty frustrating. Never knowing what is treatment related, cancer related, and what is an “illness” is crazy making. Feeling well is rare, and so surprising to me… But forward I go, as I want to live and have fun. I want to do whatever I can, on the days I can. So on Saturday, I uncanceled our canceled plans, and off Jim and I went to visit a family friend we hadn’t seen over a year. I was worried about unexpected side effects, but took the risk…

 Can you guess what happened? We had a lovely visit. Went to this beautiful “Lake Shrine Retreat” park, which was so peaceful, lush and visually nourishing. Next up, dinner… I mentioned to Linda I felt like Italian food. She knew of a wonderful neighborhood gem. We had a lovely time. Amazing food. Warm conversation. Can you guess what happened? I felt fine during dinner. Enjoyed lots of bread, olive oil and balsamic. Yum! Chicken Parmesan with sautéed spinach. Yummy! Can you guess what happened?  We chatted, caught up from years past. I was confident I’d be fine. Can you guess what happened? We visited some more, lingered, said goodbyes, and headed for home. Can you guess what happened? Traffic was cooperative, no problem. Then close to home, I felt the ol telltale slight GI rumble. I ignored it. Lower GI stuff hadn’t been an issue for me much in the last few months. I thought I was imagining it. Just a random fluke. Can you guess what happened?… Yep……….. I BARELY MADE IT IN THE DOOR, and I haven’t left the bathroom much since then lol! Except for lunch today, as I tried an outing again with a girlfriend I haven’t seen in months, which had been planned for months and months. I almost to canceled, but didn’t, as I was sure Saturday was a fluke, sure I was just fine. Can you guess what happened? Yep, same story!

So it appears my unpredictable volcanic GI side effects are back. I cannot believe my recent, scary close calls. Such a wake up call to me that I really am not a well person, and I can’t go out and about freely. I must accept cancer and treatments are constantly hovering, changing my system, ready to sabotage me. Hello Imodium again, and hello fearful eating status again. I just cannot believe my life. Just when I think things will calm down… ha! Not a chance, myeloma’s mischief is always lurking.

Thank you for reading and caring about my crazy myeloma journey!

Tim McGraw – Live Like You Were Dying (Official Music Video)