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:

"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...

Garden Retreat

 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)

Waiting for News... Always Waiting and Wondering...

9.7.17
Hello September! How can this be??

So I did my labs on Thursday Sept 7 and received some of my results later that night. With Kaiser, good news shows up online, but with the most important ones, the myeloma markers, I remain in suspense until my Dr appointment Tuesday Sept 12. Myeloma is such a waiting and wondering game on so many levels. Always waiting to know how I am. Always waiting for the "ball to drop". Always wondering if my treatment is still working. Always wondering if my cells are still dominating or if myeloma is winning. Always wondering... am I ok. Will I be ok. Such an "out of body experience", for something that is an "in body" experience... crazy way to live... But I am living and that's what matters!

Surprisingly, I saw that many of my CBC's are pretty decent. But as expected, my WBC's are low, "Neutropenic low", as I am at the end of my 21 days of Pomalyst. My Dr and I have my Neutropenic status down to a routine now. She has me do 3 days of Neupogen-Zarxio shots immediately following my 21 days of Pom, and that bounces my WBC's up, along with the 7 day break from Pomalyst. It's amazing how drained and depleted I feel. It's so hard to describe FATIGUE to a "normal" person. So different from "tired". Depleted is really the best adjective. But onward always. Hello my friend Zarxio growing WBC's, boost me back up.

9.9.17
Whoohoo... one of my myeloma markers slipped through the system. Actually, maybe it's not a "slip" as it's in the... sit down for this one... it's still in the NORMAL range. My Beta 2 Microglobulin is on the precipice of  the high end of normal, but this still counts as normal! I'll take it, compared to earlier in 2017:

Range = 1.0 - 1.8

Take a look at where I was in 2009 at Diagnosis, then again 2013 when out of Remission, then the scary levels at the beginning of 2017!

So using this one test as a hopeful indicator of my remaining lab results... I'm optimistic that my IgA, M Protein, etc, will also be ok, thanks to Darzalex, Pomalyst, and Dex!

I attended my local myeloma support group meeting today. I am always so shocked and amazed at the variance of myeloma's vengeance and presentation. I met a man a few years younger than me who has been dealing with myeloma since 1999!!! Whaaaat??!! Nope, that's not a typo! 1999!!! He was "treated with the original Thalidamide, and a few other things", he "thinks it was Melphalan and bone strengtheners"... and then he stopped treatment when his numbers were good. Stopped treatment!! Yes! For years! And he said he really didn't think about it much, until he began bleeding a lot, hemorrhage type bleeding, and was extremely fatigued, became anemic, etc. Incredible! We talked about our early symptoms of bleeding out, anemia and lovely volcanic diarrhea on Revlimid. He is in the process of considering meds vs stem cell transplant. Wow! I have read of other MM patients with years of survival in the double digits, and I am both amazed and energized by this, as I approach 8 years of survival!

 
Every night, after the blistering sun sets, I head outside to do the horse arena clean up. The night air is beginning to calm the angry heat of the day. I hear the birds settling in the trees for the night, the barn owl's plaintive "whoo-hoo", the soft crunching sound of the horses scratching each other's annoying fly bites from the day, and sometimes, a gentle rustle of a breeze in the trees, cooling the parched earth....
And then.... the Gift of the Moon! Rising, blazing into the night sky, a flashlight from the heavens, lighting my way, energizing me, reaffirming "I'm alive"! It's really so magical to me. Moments like this remind me how grateful I am for the success of all my treatments.

Moonlit nights have always taken my breath away. This beauty gives me pause to process my life. Back in the day, we would take the horses on moonlit trail rides. It was so incredibly magical, that flashlight in sky, lighting our way. I always felt so alive, the quiet of the night, the soft impact of hooves in the sandy soil. Invisible wildlife observing us from the safety of their hideouts. Crisp night air, filled with sagebrush scents. Humans connected to horses, in an unspoken language.
Back then, my thoughts only in the moment, pure joy, happiness and awe. Now, on moonlit nights, gazing at the starlit sky, I try to process my circumstances. I still can't. I still don't comprehend and understand what has become of my life. I think about my daily treatments keeping me alive. How do these chemicals work to keep me alive. How am I still alive with all these crazy cellular mutations happening inside of me. How have I been able to withstand and tolerate all these chemicals for 7 years, 9 months, and be as "functional" as I am? How did myeloma happen to me? What will this week, month, year bring. What will I find out on Tuesday Sept 12? Hello Moon, thank you for energizing me, making me smile as I reflect on all the memories we've had together, overwhelming me with the vastness of this life, making me so feel alive. So grateful.

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can