Tuesday, February 19, 2019
Hello February 19, 2019.. Good News Post Coming Today!
I refer to my Mondays as "Medication Madness Monday", so this post is well timed, as it comes a day after my monthly Dr appointment and my regular weekly 40mg of Dex steroids, Velcade shot, and 8 Cytoxan-Cyclophosphamide pills! Dang, it's amazing what a body can handle! I will update you on some interesting details, and good lab results, as Yipppee this triplet cocktail is continuing to show an IGA downward trend! But first sleep, as Dex has me up past midnight right now lol...
Here are the headlines, so I don't forget what I want to show and tell you, as Dex Day #2 is not as crisp, hilarious and good feeling as Dex Day #1
M Protein "stable"
Light Chains fine
CBCs very interesting
Body organ stats good considering
Weird change of Velcade shot(s) today
Life continues to be a crazy roller coaster with my hubby's Alzheimer's decline
Rain, Rain, Rain = Muck, Muck, Muck
What's next after this triplet... Clinical Trials Scare Me... as you know, I like some semblance of control over dosage, and you can't chose your dose in Trials!
Saturday, February 9, 2019
There's been a lot of rain in our area... for our area. But as I write, I look out my window and see clean blue sky, with bright white puffy clouds. The air is cool. Cold to all of us who aren't used to "real cold". The rain has washed the earth. The trees are green and clean. The tangerines, shine bright orange. The lemons, bright yellow. There's a soft breeze in the old oaks, and the critters are warming in the sun. The usually dry creek bed behind us, is flowing now. I can hear that soothing sound of water trickling, pebbles clicking, as it flows forward, down the creek. I remind myself of all the things I am so lucky to be surrounded by, of the good fortune I have, from our hard work. I can buy hay for the horses, food for all the other critters. Insurance for us, and all the household and life necessities for us.
But I'm overwhelmed with sadness, disappointments, frustrations, from too many needs on me. I am overwhelmed by what illness has done to me and my husband. I am overwhelmed with all that I am "obliged" to do, the physical care, for so many lives. I am sad for the continual realization of all the things I will "never" be able to do now, or places I will "never" be able to go. We are very homebound with all our medical challenges... it wasn't supposed to be like this I tell myself. We worked hard, we planned, we assumed. I feel cheated, betrayed, my life stolen from me. I have angry moments. I was never an angry person. I cry, and I rarely used to cry. I work hard to "control" and diffuse my emotions. This counselor "self counsels" all the time now. Optimism is now pragmatism. There are good times, good moments, so much good, but I "know" mostly "bad" is coming our way. It comes in small doses everyday now. It's just the nature of our illnesses. I am not negative, I am realistic, and I'm so disappointed, sad, frustrated, and overwhelmed. I never expected to be, as I am now...
Life is an evolution, a continual learning curve. Whether we live life on a deeper psychological, introspective level, or we just let life happen to us, our daily experiences shape who we are, and how we move forward. No matter our life circumstances, we all have challenges, goals, expectations. But illness complicates everything. Physical disabilities complicate everything on every level. All this steals life, from once healthy, active, happy people.
My focus in life has always been my family, career, animals. All the other things were frosting and sprinkles on our cupcakes. My career was stolen by Myeloma, so that's gone. The animals are getting older, and having health challenges themselves. Sadly, so sadly, their care has become a chore for me, rather than fun, rewarding and inspiring, as it used to be. At one point in my life, I considered a career in Veterinary medicine. But after a while, I knew my calling was "helping others" on a broader, psychological level. So I turned my love for helping animals into a hobby, a very small scale personal rescuing mission. At one time, we had a mini zoo here with more species than I can recall... well maybe I should write them all out... horses, ponies, dogs, cats, turtles, snakes, tortoise, iguanas, chickens, ducks, geese, peacock, goats, sheep, birds, fish. Some critters were because my kids "begged" for them as birthday gifts. Some were given to us when someone no longer wanted them. Some adopted us. Most we adopted, rescued. All were loved, and we committed to their care for the entirety of their lives.
But now, with the minimal menagerie we have left... 4 horses, 1 pony, 1 big dog, 3 littles, 1 tortoise, 1 turtle, 1 cat, 3 birds, 6 chickens, I am often overwhelmed with their care, especially when it's muddy and rainy, cold, or on my medication crash days, when I don't feel well. Yes, I do have help, wonderful help, but as we know, the challenges and emergencies happen when the "help" is gone, or unavailable. Here's what's going on now that is just wearing me down, dragging me down, causing me to question everything I am, and will be, knowing what's coming down the road medically for us.
See, for most all of our lives, Jim did so much while I was at work, and the kids at school. As a couple, we had a wonderful "division of labor" with the household, ranch chores, animal chores, etc. He was our Mr Mom, Mechanic, Ranch Manager, Master Pooper Scooper, Super Shopper, Cleaner, Organizer, Hoser, Blower, Raker, Green Thumb Landscaper, etc. Jim loved hard work. He always wanted to be a Farmer or a Rancher, and got to do all this here, on a very small scale, after his retirement from the car business. But Alzheimers has stolen all of this from him. Literally all of it. He has moments of recognition of who he used to be, and if I'm gone for blood tests, or short errands, there have been times, I've found him outside, trying to do chores. You may be thinking, good for him! He should try to do, and be who he used to be. But it's more complicated than that. He has mobility issues from various injuries, and an injury to his leg from a blood clot, etc. We worry that if he tripped and fell... well... that could be disastrous outside. Or imagine him falling in the horse arena, trying to scoop poop. This image can be comical, as picture the horses gathered around him, wondering what the heck he's doing on the ground. But it could also be a serious crisis...
Tuesday, January 29, 2019
No new news to report from my status on 1.19.19
Hoping my stats are even better in February!
I am so thankful this triplet of Velcade, Cytoxan, 40mg Dex steroids is making a dent in overpowering Myeloma... well making a dent to an extent, somewhat, that is. My IGA didn't plummet to normal or anywhere near lol, but it certainly moved in the right direction! Last labs you can see on my previous post show I am still 3x the High End of Normal, but that's sure an improvement on the previous months!
I marvel everyday, every treatment, what my body has been through and able to handle for 9 years. Still this myeloma diagnosis and experience is surreal and an out of body non reality for me. Yet I do what I have to do, daily, weekly, monthly, and so on. "It Is What It Is"... I tell myself all the time. Carry on Julie, you're not in control any longer... On treatment days I get up and take 10, 4mg Dexamethasone Steroids, which = 40mgs! Then a few hours later, I show up for my Velcade shot. A few hours later I take 8 Cytoxan pills at 50mg each for a total of 800mg. Seriously, how can I be doing this? How does my body tolerate it? I would love if there was a little camera I could ingest, that would show the adventures going on inside of me. How incredible would that be! I'd love to see what is happening to me cellularly, chemically, biologically. I'd love to see how the cancer cells grow, and take over. I'd love to see how the chemos ambush and trick the cancer cells, killing them off, or disabling them. I love science, but I'm not smart enough to fully understand all this amazing stuff!
I do have nausea later in the night, but not too bad
If you are a myeloma patient, I highly recommend the Myeloma Crowd Facebook support groups. They are an invaluable source of information, support, understanding, sharing and myeloma comradery. https://www.myelomacrowd.org/connect/
Saturday, January 19, 2019
So fun to type out 9's! Yes, 9's. 9's representing 9 years of battling and living with Myeloma.
My topic of this post was going to be philosophizing about Happiness. Being Happy. Remaining Happy. Finding Happiness. Maintaining Happiness while dealing with a terminal illness, treatments, and being sick. I was going to write all about Seeking Happiness and Remaining Happy while processing life's Disappointments, Lost Dreams and Goals. I was going to write about Persevering even when life throws you big curves you never envisioned, yet committing to always move forward with Positivity and Gratefulness, trying to never lose that sunshiny optimism, and the "glass half full, vs half empty" perspective.
I was going to write about Happiness since people always say..."Be Happy! Always be happy." I just want to Scream!!! How much "happier" can anyone be, under my circumstances! I am so very happy and grateful for my 9 years of survival. Happy for so much, for (almost) everyone and everything in my life... OMG, I am one of the most "happy", positive, lift everyone else up, people in the world. That was my "business", my "mission" in life as a Counselor. Always helping others see potentials and strive for them. Always helping others remain positive against the worst challenges. Always helping others analyze themselves, their circumstances, and how to move forward, improve oneself... Onwards and upwards towards your personal rainbow. Always moving forward, always looking for the sunshine. Always looking for the glitter in the muddy waters.
But my life was stolen from me 9 years ago. And each year has been more challenging than the previous. Ah, Suck It Up Buttercup, right?! Life isn't all about it all working out all the time. Everyone is challenged. Everyone has dark clouds. Everyone has so much on their plate, often buried very deep within... Early on in my career, make that in college and grad school, I fully deeply realized that EVERYONE HAS "SOMETHING". Everyone has Challenges. Everyone has Battles and deep battle Scars. Everyone has a Story. Everyone has ghosts in their closets. Everyone has damage. Everyone has had to deal with, overcome, SOMETHING... but it's all about degrees and subjectivity, how those challenges are dealt with individually, and how the person moves forward,... or Not, in life.
We all have something, we all have mountains to climb,... and things can always always always be so much worse then our story..... What happens to us is personal, and we process it personally, subjectively. How I react to something is entirely different than how the next person does. Our battles and challenges really shouldn't be compared to others. But we do. All our plates are full. It's a matter of degree, and again, how one processes obstacles, disappointments, physical and psychological challenges. Some of us can regularly find the positive in the negative, the humor in the tragedy, the sun in the dark clouds. Some can't. Some of us can find the best in the worst. Some become the worst as a result of challenges and disappointments. Just look at society, the world. There's so much anger, hate, directed at self and others. Some can overcome and heal, others can't. Some move forward, others won't allow themselves to move forward. Yes, this life is a continual challenge, and the older I get, the more I realize how complicated it all is, and how it seems to become more complicated all the time. I naively thought the older I got, the simpler life would become... wellllll.... that's what I had "planned" on...
Yes, I was going to write all about Happiness and being Happy. I was going to write about how being positive, grateful, optimistic, happy, looking on the bright side is healing and life sustaining... it really is... But my challenges have become very challenging for me. I am processing disappointment, a lost life, lost dreams, lost goals and plans, lost abilities and capabilities. Of course I'm always thinking about how amazing 9 years of survival is, yet, how scary it is too, as it means the longer I live, the more treatment options I've used up, and the more I wonder about what will keep me alive, when Myeloma overpowers the current treatment I'm on, and it fails... I am still Happy, but honestly, if you really want to know.... I have a lot of anger, frustration, disappointment, and ask WHY ME often. Why me, after how hard I've worked all my life. Why me, when I've overcome so much in life prior to Myeloma. Why me, why more challenges. Why at 50, terminal, incurable cancer. Why wasn't I given a break? Or rather a reward for all I did all my life. Why wasn't my 2nd half of life, full of realized dreams, goals and some light-hearted fun. Yes beneath all my positivity, happiness, gratefulness, amazement... I am sad, mad, angry, shocked. I feel sabotaged, undermined, tricked by the Universe. Yet, the minute I write this, say this, I feel I shouldn't... as I have so much that is Good in my life. So much to be Grateful for. So much Not to be angry about. So much to be Appreciative for. Ah, this life of opposites for me...
Happiness. Gratefulness. Appreciative. For what it once was. For what it is. For what it might be. Yet angry, sad, overwhelmed for what it is. Really really sad and disappointed for what could have been. Yes, my life as I knew it, was stolen from me. Myeloma and treatments have so limited me and what I can do... And I will end here, as I just don't want to wallow in negativity... but so you know... all my thoughts and feelings are exacerbated and exaggerated exponentially by my husband's decline with Alzheimers. I think, no... I know... my extremes of emotions is due to the sadness I feel regarding our stolen lives and the daily complexity of our lives, with me becoming his caregiver, caretaker, his cognition. Yes I know... it could be so much worse.... But it is so sad, so intense, so disappointing...
Ok... enough of all that...
My Beta2Microglobulin results slipped through late yesterday, and... and... yessssss... Good News!
And even more good news has come in! See below. I should probably delete this post, and go back to writing about HAPPINESS!!! As I sure feel it now, thank you chemicals for working and pummeling those mean and devious myeloma cells!
Wish Kaiser hadn't "upgraded" their online view of labs, as it's difficult to capture a retrospective screenshot of where my past results were. Boooo on them. Anyway, I will see my Dr on Monday Jan 21, and have my full Myeloma status labs back then. Check back friends, as I will add those labs to this post, so we don't have to wait for my 1.29.19 post :))
LABS JUST CAME IN! LOOK BELOW!
Thank you for reading, caring and commenting. I hope my honesty and candor is interesting, helpful, insightful, and thought provoking for you... Hoping your life, your challenges, your mountains are manageable, or even inspirational and rewarding for you.
LOOK WHAT JUST CAME IN! THE LABS ARE NORMALLY NOT AUTO-RELEASED! GUESS "THE UNIVERSE KNEW" I NEED A LIFT!!! WHOOHOO! TALK ABOUT HAPPY! YES I AM!
Wednesday, January 9, 2019
How fun to write 1.9.19
9 Years with Myeloma
9 Years surviving Myeloma
9 Years of Myeloma Treatments
9 Years I Never Thought I'd Have
In Myelomaville, 9 years is a BIG DEAL!!!
I have 999999999 zillion thoughts to share... on so many levels, about so many things... but I will edit my thoughts and be back in 9 seconds, or 9 minutes or 9 hours to finish posting :))
So here we are, January 2019. We've rolled the calendar over to a fresh new year. But just think,... how many have already received, or experienced life changing news or events in just 9 days of the New Year. 9 years ago, I was reeling from my new Myeloma diagnosis. Our lives are just so "fragile", and can change in seconds. Good change. Bad change. When life is flowing along, I don't think many of us give potential "tragedy" significant thought. We just don't think "bad things" can happen to us. We're aware of terrible things, events and challenges that happen to "everyone else", but we often think we're immune. We don't personalize the "What If". We carry on, presumptuously, safely, robotically, with our daily lives. Doing, planning, going, expecting, assuming. Assuming what was, what is, will continue to be. Then boom! Suddenly our lives are forever changed. Something, somewhere, to someone close to us, or to us, happens. Then life is never the same. Never ever the same, ever again.
No matter how carefully we plan, how well we take care of ourselves and our loved ones, "something" is bound to happen. That's just life. I've learned tragedy, challenges and heartbreak are the "norm". Life is not Unicorns, Rainbows and Rivers of Glitter. Life is Hard. Life is Challenges. Life is Pain. Life is Being Tested all the Time. No matter how much we think we can control outcomes, ultimately, we cannot. Perhaps because I was a Counselor/Advisor all my adult life, I felt a greater ability to affect outcomes and destinations. I was a healer, helper, facilitator, eye opener, dream creator. I inspired, lead, questioned, proposed, and helped others see themselves and life's potentials clearly. I opened doors and windows of opportunity for anyone that was willing to work for their dreams and goals. I always felt hope for everyone and everything. I always believed "if there's a will, there's a way". I was the eternal optimist. I believed awareness, change, options, choices, education, gave one unlimited, limitless possibilities. Possibilities to rise above. Rise above pain, disappointment, tragedy.
But tragedy always happens. In our little worlds, and the big world. Do you know anyone that's immune? Do you know anyone that hasn't experienced some sort of tragedy? Perhaps the older the we get, the more aware we are of how every life is touched by "Something"... It's just a matter of degree, right? How much, how deep, how tragic the tragedies are. My life went from hard work and commitment equaling positivity, happiness and a semblance of control. To a life quite out of control, regarding the health challenges that continue to escalate for me and my husband. No I didn't think I was immune, but I just never thought what I am currently living, would be my life.
9 years ago, I went from thinking I was overall healthy, to a terminal cancer diagnosis. I went from thinking I had control over my life, my body, my future, to learning I basically had little control over much of anything any more. Why I am still here today is a combination of medical science and medical miracles, with a dash a good luck, and internal organs that have been able to withstand 9 years of myeloma treatment. Why I am still here, is absolutely amazing to me! I am grateful and appreciative beyond words. But being here still, has been an incredible challenge.
9 years of myeloma treatment. 9 years of being sick. 9 years of wondering if and when, I'll run out of options. 9 years of never feeling "normal". 9 years, always aware my body is full of cancer. 9 years of an internal fight. My body trying to kill me, as medical science tries to outwit ever morphing cancer cells. Seriously, if you are not on this type of journey yourself, wrap your head around that. I still can't. 9 years of various combinations of treatments: chemo, immunotherapies, pills, injections, shots, medications, etc. And a Stem Cell Transplant. And alllllllllll the crazy side effects, completely ambushing my life. I can't fully wrap my little head around everything I've been through and continue to go through, to stay alive.
But I am Alive. Alive and still up for the fight. It's a daily fight, but I'll fight as long as there are options to treat me with, that allow me some level of Quality of Life.
Currently, since late September, I have been on a weekly cocktail of:
40mg Dexamethasone steroids, paired with Velcade shots in the belly, paired with 400mg of Cyclophosmamide-Cytoxan chemo pills. This happens every Monday. 10 steroid pills, 1 shot, 8 chemo pills, all in one day! How can the body handle that? Just amazing what medical science has figured out to kill cancer cells, but not kill us in the process. Well, me at least. The treatments haven't killed me, they've successfully killed myeloma off and on for 9 years!
My status labs are next week, and I'll find out the effectiveness of this treatment at my next Dr appointment on January 21.
Meanwhile, tragically, my husband Jim continues to decline with Alzheimer's. I'm not sure which is worse. Terminal, incurable cancer, with treatment 24 7 for life, or having one's brain slowly betray you, stealing your ability to analyze, do critical thinking, creating complete confusion about life's vital tasks that should Not be confusing. Complete confusion, disorientation, about things we all take for granted. I knew Jim would age ahead of me, and become "old" before me, but I never thought such a talented, incredibly capable man would have his functionality stolen away from him, as is happening to him daily, weekly. My brain thinks for 2 now. My broken body, has taken over so much, as his breaks down more. The biological trickery is crazy to witness. The brain confusing that which should not be, never was, confusing. We are living a very fragile fine line, that if either of us loses mobility, life as we know it, will never ever be the same. But I remain ever grateful for the wonderful life we had, and to a degree, still have. I am ever grateful and thankful for the wonderful insurance we have, that allows for treatment of our ridiculous situations. I am forever grateful for all the wonderful, supportive loving people in our lives. As awful as things are, they could be so much worse. I am appreciative, grateful, blessed in so many ways.
Sunday, December 30, 2018
9 Years = 108 Months
9 Years = 469 Weeks
9 Years = 3,285 Days
9 Years = 78,840 Hours
9 Years = 4,730,400 Minutes
9 Years = 283,824,000 Seconds
Yes, 9 years ago I was diagnosed with Multiple Myeloma.
I still can't wrap my head around it...
I was staring out the window as I writing this, trying to think of something "profound" to say, but I don't feel profound today. I feel a bit empty, blank, incredulous, still consumed in wonderment. How? Why? When? Really? Got to be kidding! Not me! Wrong person. Multiple Myeloma. Terminal Cancer. Incurable Cancer. Treatment for Life Cancer. Multiple Myeloma. Myeloma. Blood cancer. Blood Plasma Cancer. Treatment will save your life. Chemo. Steroids. Stem Cell Transplant. Kaiser. City of Hope. Blood Tests. Chemo. Blood Tests. Chemo. Blood Tests. Stat. Blood Tests. Chemo. Status. My status = Multiple Myeloma. Cancer. Incurable Cancer. Terminal Cancer. Yes, but a "Treatable Cancer".
"Your Bone Marrow Biopsy", from 12.18.2009, has confirmed your diagnosis of "Multiple Myeloma", a Blood Cancer. Blood Plasma Cancer. High Risk IGA type Myeloma." You're young for this diagnosis." I'm so sorry." So sorry to give you this news and diagnosis." Yes, cancer." Multiple Myeloma"... Incurable, but Treatable."
Lots of details. Lots of questions. Numb. Shocked. Incredulous. Not for real. How did this happen. Wrong person. The lab mixed up my blood with someone else, that's what must have happened. Blood Tests, Chemo. Steroids, Chemo, Steroids, Chemo Steroids. Blood Tests. Stat. Blood Tests. Stat. Chemo. Steroids. Chemo, Steroids, Incurable, but Treatable. Radiation. Yes, Radiation for all the holes, lesions, plasmacytomas. Radiation. Lesions. Holes. Plasmacytomas. Fractures. Bone involvement. Too many areas to treat... so much bone involvement. Radiation. Diarrhea. Imodium. Diarrhea. Imodium. Chemo. Steroids.
And here I am 9 years after a deadly diagnosis!. A miracle survivor. More chemo rounds than I can count. Been thru almost all the standard treatments. Revlimid. Kyprolis. Pomalyst. Darzalex. Velcade. Are there any left, after my current old skool Velcade and Cytoxan-Cyclophosphamide, Dex combo? Yes. Thank you brilliant researchers. Yes. But are clinical trials next? What's next... which chemo. And if I choose to stop treatment... how long do I have??? "Months", he said, "not years", as I once thought, when I asked my SCT oncologist, a few years ago. Yes, I will continue to treat. Treat for my forever. But so sick of being sick. So sick of fatigue. So sick of diarrhea. So tired. So fatigued. So tired of not being normal. My previous normal. My life was stolen from me. Wanh, waaanh, waaanh,....
Yes I am so very grateful to still be here. So amazed. So proud. So grateful!!!
Wishing all of you the happiest of New Years, and may 2019 bring good things to your life, and your loved ones. Wishing you good health, no drama, dreams fulfilled, and a meaningful life. Thank you for reading, following my story and your wonderful comments. I'd love to know how long you've been reading my blog, and following my story. 9 years is a long time to be writing :)) I'm pretty amazed when I look back on all my posts, and think about all my thoughts and stories living here on this blog!
Here's all my 12.30 anniversary posts:
What a wonderful little Celebration of Life,
9 years of addition life, I never thought I'd achieve.
Thank you to all my wonderful Doctors, Nurses, Medical Staff
Medical Science Researchers, my family, and friends near and far!
Friday, December 28, 2018
Wow! Today 12.28.18 marks the last of my on the 8's posts (but NOT my last post for the year :))
For those that have been loyal followers for years, you know that I have symbolically posted on the days representing my number of years of survival, hence this year on the 8's, my 8th year of surviving, and living with Myeloma. Yes, my 8th year is rolling over to 9. Hard to wrap my head around this "accomplishment". 8 going to 9. For me, and all myeloma survivors, each year is such a milestone of so many things "achieved", survived. In just 4 days, we and all of the world, will be rolling over to 2019! Happy almost New Year to all of you!
Yes, I celebrate my good fortune daily. I celebrate that I am still here, 9 years after my deadly Multiple Myeloma diagnosis 12.30.2009. But deep inside, to tell you the sincerest truth... I am not always "celebrating". I have such an intense variety of emotions and feelings regarding my "not so new, unwanted, new normal"... but I hesitate how much I should share. I "know" many of you, but as with any public blog tossed out to the universe, I really don't "know" who all my readers are. Many of you have let me know that you appreciate my thoughts, my honesty, my silly humor, my candor, but how deep, how honest should I be on a public blog... that the entire world can read... is what I question all the time.... Well here goes my end of the 8's raw, unleashed, unfiltered thoughts... My Life of Opposites:
Beneath all my happiness, I really am quite sad.
Within all my gratefulness, I'm also pissed off.
I am constantly questioning if I am living, or merely existing?
Within all my amazement of my incredible survival, I am exhausted from fighting.
Steroid days have me "high on life".
Crash days have me questioning "everything".
Within all my survival "achievements", my life as I knew it, was stolen.
I love all my animals, and they give me joy and laughs, but their care is now overwhelming.
I love my horses, but they are a constant reminder of what I CANNOT do.
Am I living, or just existing?
Am I prolonging life, or extending death?
Am I extending life, or prolonging death?
I love and appreciate beautiful sunny days, but the earth's natural beauty is a constant reminder of all the things I am MISSING out on, and can no longer do.
There's so much I want to do, but I am immobilized by side effects and fatigue.
I love seeing everyone enjoying life, but I'm envious of their health and freedom.
I have a love, hate relationship with food. Without it, I wouldn't survive.
With it, I am "tortured" by the unknown, surprise, often debilitating GI events.
I'm so very grateful for 9 years of survival, but so beat up from 9 years of fighting.
I am in awe that I am still here, and so are many other people who just don't "get" the myeloma struggle.
I am grateful for everyday I wake up, but every day is challenge.
I don't want challenges. I don't want to grow stronger. Challenges don't make me stronger, they beat me up.
I am so tried trying to help others understand the precariousness of my situation.
I am so tried explaining, "defending" "why I look so good", but have a deadly, immune compromising, incurable cancer.
I am perceived as "so strong". I really am not. And don't want to be.
I want to crumble, be taken care of, and have everyone understand how sick I really am.
But yet that's really not me...
I'm strong by nature, my body weak from myeloma.
I live in the moment, what little "living" I do.
I don't want to plan for the future any more.
Who knows what my future is, and how scary that will be.
I am no longer proactive, but reactive.
I want to laugh
I want to be silly
I want to play
I want to run, ride, hike, play, lounge in the sun.
I want to be carefree.
I want to do what I want to do, without the fear of "breaking".
Myeloma has eaten my bones
My bones have holes and lesions and tumors
I am fragile physically
I am fragile mentally
I want to feel good
I don't want to focus on my health and illness, but I can't avoid it.
I am "forced' to focus on my body all the time, and I don't want to. My body is not my friend.
I don't want to think of what medications to take and when, and what it will do to me.
I don't want to have to worry about side effects 24 7, 365 days a year, but I don't have a choice, if I want to continue surviving.
But I am grateful for all the medications keeping me alive.
I am grateful for all the brilliant medical scientists that have discovered all these treatments that are keeping me alive.
I am grateful for all my doctors, nurses, medical staff working with patients like me, to keep us alive.
I am grateful for all those that love and care about me.
I am so fortunate for so much in my life- family, friends, awesome medical care, wonderful insurance
I am grateful to be able to write as I do, and post my thoughts and feelings.
But I am sorry these are the thoughts and feelings I must write about.
I allow myself to ask "Why Me"?
Why Incurable Myeloma?
Why diagnosed so "young", back then?
Why my type of Myeloma, that demands continual treatment, non stop.
Yes, that's right... Continual Chemo, daily, weekly, monthly, forever... if I want to live.
Yet, I know how "good" I have it, in comparison to so so many.
I am sad, angry, frustrated, confused, resentful... what happened to me and husband..
I can't believe how both our lives were stolen from us, and how our bodies betrayed us.
Yes I understand "the big picture" of things... but how can I not "compare" and not be frustrated with what happened to us individually and as a couple...
I am happy, yet so sad...
Forgive me if I sound ungrateful, selfish, self absorbed, and narrow minded.
Betrayal, unwanted challenges, pain, disappointments, a terminal illness does that to one's psyche. Or at least to mine.
I used to be so optimistic.
I still am.
I used to be so strong.
I still am.
I used to be so forward thinking.
I still am.
I used to be a lot of things I no longer am.
That's ok. No it's not ok.
I am so many opposites now.
But I am here, and I will continue to fight to be here for a long time...
So as I was writing this last on the 8's post, the blog views counter went from 208,800 to 208,808, to 208,818, to just now... 208,888! How crazy is that. Crazy 8's! I started posting much earlier today, then things got busy, and now late this evening I am finally posting my thoughts. Unfiltered, unedited. My life never was so self-focused. My life was all about being there for other's journeys. My joy was in "saving the world, one student at a time", one animal at a time, being there for my family. Being all about me, is not me...
Tuesday, December 18, 2018
Been in and out the bathroom most all of the day, and yesterday, and the day before, etc. The Radiology team wasn't kidding when they told me I would "probably" have lower GI side effects for a week or 2 or beyond, since my lower abdomen, spine, sacrum and pelvis area was the targeted area for treatment. Love the irony of my anniversary days where I have symptoms and side effects that remind me how sick I was back when I was diagnosed. Well I've been sick for 9 years now, so what else is new!
It's difficult for a "healthy and normal" person to understand the never ending treatment and side effects of Myeloma. In my case, I haven't been well for 9 years for sure, and I'll add in the year or 2 before I was diagnosed! And then the incomprehensible factor of daily, weekly, monthly, yearly treatment, non stop, which then causes daily, weekly, monthly, yearly side effects. I try to describe to my "well" friends and family what it is like TO KNOW you will be sick several days out of EVERY week, no matter what, because of the medication crash. Yes, imagine knowing, and planning for BEING SICK, feeling lousy, for 3 or 4 days a week, every week of the year! Hard to comprehend right? Well that's my life. My current "Medication Monday" means the side-effects crash happens Wednesday through Saturday, with Thursday and Friday often the yuckiest. But it's different every week. I never know how I will feel, what side effects will hit me, when, what, how... But imagine, KNOWING, every week you will feel sick. That's just your life now. Feeling sick and yucky every week. Hello Myeloma... The Gift That Keeps On Giving...
So anyway... wasn't planning to rant about that today, but the lovely lower GI side effects have taken over my life for the last week. I'm just like my horses... In one end and Out the other...
But onwards... to "celebrating" my 9 year anniversary milestones! 9 years ago today, 12.18.2009, I was "surprised" with my first Bone Marrow Biopsy. Yes surprised, as I don't recall that it was scheduled (to my knowledge) as part of my appointment for that fateful 12.18.09. See, each time I took labs, my doctors became more and more concerned. When we met, she "gently" indicated the seriousness of my situation, and that I would need to have a Bone Marrow Biopsy done to determine what was exactly going on. I suspect she knew my diagnosis, as I learned quickly, a BMB confirms the diagnosis of Myeloma and other blood, bone cancers. No doubt, having that painful procedure done, was a turning point in my new medical journey. Up to that point, I really believed I was just seriously Anemic, with other related side effects, but I really never entertained the thought of a "deadly diagnosis".
I remember my sweet Dr and her nursing staff talking me through the procedure, as I was trying to be brave, light hearted, and nonchalant about the procedure. But with each jab, stab, grind, pound, drilling into my bone and marrow, the reality of my situation "pounded" me with each pound of the medical tools. I'm not quick to cry, but I did then. I began to sob uncontrollably. The pain was so symbolic of my realization of the seriousness of my circumstances. I cried, my body quaking and shaking, as I apologized to my Dr and Nurses. I remember saying something like, "I'm a really sick puppy aren't I?" .... I don't recall their response, but I know it was kind and supportive and non committal or definitive. I cried more on the way home, as my husband and daughter tried to comfort me, as they too were scared and confused... Yes, 12.18.2009 was the beginning of my new reality, that something serious was happening to me, but I'd have to wait until my appointment, 12.30.09 for the results. Happy Holidays to me, right?! Yes, I had to wait 12 days. Through Christmas, and up until almost New Years to find out what the results of my first Bone Marrow Biopsy was....
Fast forward to now...
Here's my current status and update...
But still 4x the high end of normal...
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
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!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
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?
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.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.