Hello Friends and Loyal Readers-
"HAPPY" (haha!) 11 YEAR MYELOMA DIAGNOSIS ANNIVERSARY TO ME
TODAY, DECEMBER 30!!!
Can you believe I have been FIGHTING Myeloma for 11 years now? I should be "dead", but so darn grateful, thankful, blessed to still be here. Seriously unreal, and unbelievable, right! 11 years, wow!
On this day, 11 years ago, I was diagnosed with Multiple (WTF) Myeloma.
11 years ago, December 30, 2009, I was diagnosed with INCURABLE MYELOMA CANCER.
11 years ago changed my life forever, but on that day, I could not possibly comprehend or understand what was ahead of me.
I heard the word CANCER and knew what that meant. But I sure did not know ANYTHING about Myeloma, Multiple (Who?) Myeloma.
Everyone said- "Julie, Don't Google It!", "Don't Get Online and Read!" HA! That's EXACTLY what I did that night, and continue to do almost daily, to keep informed about what Myeloma is, how it's treated, how it mutates, morphs and changes, and how this huge unforgiving train comin my way, directly at me, is ready to run me over and do me in any day...
11 years ago, December 30, 2009, I was diagnosed with Myeloma. Multiple (OMG) Myeloma. I've survived this crazy, incurable cancer roller coaster insanity called Myeloma, for longer than anyone thought I could or would. Myeloma has been trying to KILL ME for 11 years now, but I ain't going down without a huge fight!
Yesterday 12.29.2020 I had a Dr consultation appointment to plan the next treatment attack. My Kyprolis IV infusion was cancelled because my CBCs, Hemoglobin, Platelets, Red Cells, etc, are too dangerously low for chemo, so I received 2 bags of blood. So many things I thought I would "never do", I do now to stay alive. Thank you so very much to all the Donor Angels out there, saving our lives, One Bag at a Time!
11 years ago I could not even fathom where I am today, but I always thought I would still be alive. Yep, I was super naive and arrogant enough to think I was "different", even though a Myeloma diagnosis is DEADLY, full on deadly. I just couldn't couldn't fully absorb I was Not going to die an old lady, walking her pony down the road, thinking it was a dog or goat :)) Myeloma just wants to eat us up alive. And at this time, there is NO CURE, just chemo options. I seriously didn't question my long term survival at diagnosis. Stupid Yes, as Myeloma is medically TREATABLE, until one's treatment options "run out". But thankfully, all the incredibly BRILLIANT MEDICAL SCIENCE RESEARCHERS and Doctors are always on the hunt for novel TREATMENT combinations for us, always researching new options and a possible "CURE" for this awful, relentless, morphing, mutating, incredibly SMART cancer. I hate you Myeloma, but from a bio-science perspective, I marvel at what cancer can do to a once healthy body...
Well, here's my most recent Lab stats, they're not happy news and kinda scary!
Was wishing this blood sample had
Myeloma is smart, and mutates Fast and Furiously
when we become "Refractory" to the treatments we are on.
So on to the next level of treatment...
Better Brave Up Julie!
IGA is my telltale status marker
Yikes! Almost 13x the HIGH end of Normal!
As they say... "Numbers Don't Lie"...
How can the Beta2 increase like this in only several days?
Well I did reduce the 40mg Dex Steroids to 20mg for a week...
This week I'll do 20mg Mon, 40mg Tues, 20mg Wed, 40mg Thurs.
Just can't stand how poofy and bloated I am now :((
Ahahhaaaa!!! Me :))
Here I am, receiving 2 bags of donor blood-
Never thought I would do that, but I sure
Thank the Donors for their Kindness and Selflessness!
Everyone in healthcare are amazing soldiers, warriors and life savers!
I always "bring" Jim with me,
have his picture in his car and mine always
and also a pictorial "shrine" to him in the kitchen.
He is always with me, and I feel his presence everywhere
in our house and property
Amazing what cancer patients go thru,
and so Amazing what the body can tolerate!
How can someone eles's blood co-mingle with mine,
and my body is totally ok with it!
Can we just drain my Myeloma contaminated blood,
and replace it completely with some healthy blood :))
So what did my Dr and I discuss...
Well a lot, and know she feels bad for me, as she knows Quality of Life is Most Important to me at this time, and she knows I am afraid of new side effects, and she knows I am scared of changing to new chemos, immunotherapies, and she knows I don't want another SCT (even tho I have millions of my own Stemmies for another SCT), and she knows I don't want to do the Car T (as too many I know have had severe complications, and eventually passed away after it seemed so promising)... At this time, it's Hospice over Hospitalization for everything...
So I had downloaded a copy of all the FDA approved Myeloma meds as talking points, highlighted what I have already tried, had success with, and then eventually became refractory to-
Here's the list of all the meds I have done since January 2010. Several of these I have done several times in different combinations with each other. Several of these I had somewhat miminal daily side effects LOL, minimal being so relative LOL. Diarrhea, extreme Diarrhea, Nausea, intense bone, muscle, nerve pain. Extreme Fatigue. Fevers. Steroid bloating. Neuropathy, Neutropenea, etc.
Actually NOTHING about this awful journey has been minimal LOL... but the WORST for me was Elotuzumab-Emplicity that seemed to grow, encourage, morph and mutate all my tumors, lesions, fractures, masses, etc!, into the "huge" out of the bone marrow, into body cavity, "masses". June, July, August of 2020 was so awful on the daily imobilizing pain and fever scale, (and unfortunately, that was when Jim was declining so fast also, and we put him on home Hospice.) So insane I am living with a Mass in my R side Lung Chest area (tennis ball size), R side skull area, and R side Abdominal (near the Kidney, Liver and Adrenal Gland area), softball size. So unreal to me.
THE BEEN THERE, DONE THIS LIST:
Dexamethasone Steroids @ 20mg or 40mg, always paired with these-
Cytoxan IV prior to SCT
Melphalan IV with SCT
Cytoxan (IV for SCT 2010, pill form for treatment Sept 2019 to May 2020)
Great list here of treatment options...
Had Radiation in 2018, for a week+:
Sacrum tumor, Skull, Ribs, Clavicle, collarbone tumor and several fractures
Had Radiation in 2020, 2 weeks+:
Have a Lung mass size of a tennis ball, and Abdominal mass even larger, the size of grapefruit or softball, more clavicle and rib radiation- both R and L sides
Acyclovir daily to prevent Shingles
Omeprazole for Steroid stomach issues
Benadryl to prevent reactions and for sleep
Flexeril to help calm and untangel all the nerves and muscles caught in all the tumors, fractures and masses
Vitimins- B12, D3, C, Magnesium, Women's Alive, Tylenol,
Opioids (that I don't use as they don't do much for me, so why use those and damage my body more!
.81 Aspirin, depending on the treatment and chance of DVT
And more I am probably forgetting
So what am I going to do, going forward...
Everyone always asks if I seek out 2nd, 3rd opinions. I don't feel I need to, as I have a wonderful Dr who consults with the whole Kaiser Onocology Team, and is very aware of how I feel about how I want to treat this awfulness. And she consults with current research, studies, and clinical trials, and follows that VERY EXACTLY. She brings up the reports, trials, treatment options, when we meet. And Kaiser is paired with City of Hope,
so I have access to any medication, treatment, drug, clinical trial, etc, I want. Again, I am the one putting the brakes on many suggestions, because I AM NOT BRAVE WHEN IT COMES TO YUCKY SIDE EFFECTS!
But I did schedule an appointment for January, with the Kaiser City of Hope Myeloma Specialist Dr Sahebi, My local Dr will also consult with her, re my next chess move. They all work as Team and consult with each other all the time for case management and planning. What better is that? And again, I have access to ANY MEDICATION, CHEMO, IMMUNOTHERAPY, TREATMENT PLAN COMBINATION I WANT, Kaiser has never refused me anything, ever, and has always leaned towards a more "agressive" , "progressive" treatment perspective than me!
We discussed combinations of these, some I have done before, others new to me:
Thalidomide (very old school, and one of the 1st Myeloma treatments)
Ninlaro - Ixazomib pills
I never was a big "risk taker", and certainly am NOT now. I used to be much more "brave" and took all this more lightly than now. But as I stare death in the face, with one foot in the grave, and know my High Risk IGA has morphed and mutated, I am more aware and scared than before, and KNOW I must make decisions I don't want to. And those decisions are:
1- I can deal with Lower GI side effects, but not Upper GI side effects and I know several of the newer meds are puking meds...
2- At this time, I do not want to be Hospitalized for the super duper 24 7 high dose, 4 or 5 chemos/immunotherapies at a time, as with stupid Covid, my family and friends cannot visit me. Face Time, etc is not my thing and when I feel Gross, I wouldn't have energy for that. I told my Dr it's Hospice over Hospital. She understands but would still like to be more "aggressive" than me.
3- At this time, I do not want to be Hospitalized for another Stem Cell Transplant, even tho I have millions of MY cells for it and it would be at the wonderful City of Hope. Maybe later on after Covid is reined in, if ever...
4- At this time, I do not want to be Hospitalized for the CAR T transplant, as sorry everyone, I "know" and "know of" too many Myeloma warriors that seemed to be ok at first, then tragically passed away, after thinking CAR T magically "healed and cured" them. And they were in reputable hospital clinical trails at City of Hope, and all over the USA at Myeloma Specialty hospitals..
5- I will wait to see what my Dr says after consulting with the Myeloma specialist at City of Hope
6- I will consult with her too at my January 2021 appointment
7- At this time, I am ok with bumping up to a 3 or 4 medication combination that is both pill form and clinic IV, but with stupid Covid, maybe all pill form, but ugh, my poor tummy!!!
8- I hate pain, I am NOT Brave anymore, I want to feel good, I want to be able to live life while in treatment. I just want to do all the "little things" around here Jim and I worked so hard for all our lives. I'm not even asking to go horseback riding any more. But maybe one day I can groom some manes and tails? I am Sick and Tired of being Sick and Tired. I'm so over not feeling well. I cannot stand the constant FATIGUE when not on steroids. Yes, I live in La La Land :))
Here's all my posts from the time I've reflected back on this incredible 11 year journey. Can you believe I've been writing this blog for 11 years now! I need to make this into a book in case Google crashes! Ugh, scary, don't want to jinx it...
And soooooooooo, the crazy journey continues. I'm amazed, stunned, shocked, increduous, but ready to begin 2021 With a New Stronger Treatment Plan that will Pummel Myeloma's celluar butt! If you have successfully done a treatment I have not, Please Share the Combination with Me! If you have a recommendation of a particular IV, Pill-form chemo, immunotherapy, please Share with Me! I am open to all ideas EXCEPT something that involves HOSPITALIZATION. What my husband Jim went through with the home health care Hospice, was "wonderful" and peaceful, and taught me and my adult kids a lot. Hospitalization right now with stupid Covid, is very very crazy and complex and if "something went wrong", I would pass without my family there... So I'm stickin to out patient chemo and immunotherapy pills and chemo-clinic IV at this time.
Hospice over Hospitalization is my new mantra :))
Thank you for checking in, reading and commenting about my life story. Means so very much to me! Hoping you and your family are well, happy and ready to get the heck out of 2020 and get to a better 2021! Best Wishes for health, happiness and positive things for all of us in 2021!