Sunday, November 10, 2019
So yesterday I attended my local Myeloma support group, that I have been attending for years... (I'll have to ask our facilitator how long I've actually been going)... Wonderful group, wonderful facilitator/leader Theresa! I have benefited so much from attending this group. Have learned so much from everyone's stories of treatment, their life with myeloma, and sharing cancer survival skills... The meetings are informative and emotional. Some meetings are Medical/professional speakers, other meetings Members sharing their Myeloma stories. Yesterday we had a large group, with quite a few new members. Newly, recently diagnosed, to one man, WHO HAS SURVIVED AND LIVED WITH MYELOMA FOR 32 YEARS! YES 32 YEARS! That's not a typo! I still can't get over it. His story gives all of us such hope!!!
Driving there I was teary and emotional, as I haven't attended in months due to my husband's rapid Alzheimer's decline, and the challenges of both our illnesses, along with the recent CA fires surrounding that area and mine. But on top of those emotions, I was super sad and reflective because my neighbor and special myeloma buddy Gary, (who I attended with for years (along with his wife Pat, and my hubby Jim)... had recently passed away this August... So driving there alone, without any of them, really affected me. Just so much loss on so many levels personally, along with seeing the burnt hills, so close to homes and the Reagan Library, was just so sad on so many levels...
At the meeting, there were so many stories of all kinds of myeloma treatments, successes, failures, hospitalizations, medications, medications, medications, stem cell transplant stories, challenges, challenges, challenges, etc... but what impacted me the most, were the stories of horrific bone issues, compression fractures, bone breakage survival, bone surgeries, Kyphoplasty, etc... I need a lesson in Human Anatomy and Physiology to know what parts everyone was referring to!!! Brought back memories of my status this time last year, with my awful painful plasmacytoma and lesion issues, resulting in Radiation in December 2018... But in comparison, I feel so fortunate with my treatment success and limited pain issues compared to so many... more on this... as my Horse Farrier is here now, to trim the horses hooves... then more "stuff" here to attend too, then off to take weekly blood tests, then, then, then.... see there always so much going here... but in perceptive... I'm so very lucky...
In the meantime.... here's our Anatomy lesson for the day... as so many bones were mentioned in medical terms, I know not what they are!!!
I'm back :)) ....
There were so many stories at the meeting regarding how most people were initially diagnosed with myeloma because of severe bone pain, bone issues, bone breaks, bone surgeries, etc, it was mind bending. So many stories of kidney failure too. When I was diagnosed, my presenting symptoms were extreme horrible blood test results (clearly showing myeloma), extreme fatigue (I thought was work/life exhaustion), extreme anemia from bleeding out (which I thought was allergies and "girlie change of life"), breathing issues (which I thought was from being out of shape), and a terribly compromised immune system (which I thought was from being exposed to so many students).
But the stories! OMG :(( One lady, who has been a member for a while like me, and also a horse gal like me, was diagnosed when her neck/spine collapsed. Area C-something in the graph above. She was at her ranch, teaching riding lessons, and doing something in the barn, when cccrrraaaacccckkkk, went her neck... So many stories of extreme bone pain, bone fractures, lesions, on and on and on... So the "pity party" I came to the meeting with, quickly turned to gratefulness of my status.
Whoops, here comes Jim needing help, and our caregiver has left...
I'll try again to update...
Thank you loyal blog followers for your concerned messages regarding me not posting on the 9 yesterday...
Just so much going on here, and I never get the private time to write, as I used to... Not enjoying being "boss lady" in charge of "everything"....
Tuesday, October 29, 2019
So much going on here in CA with the fire and wind. I'm beat up from being on high alert 24 7 with everything. Potential fire, crazy winds, potential power outages... not to mention our daily health and functionality challenges... ugh, I only wish for zero challenges in my life, but I guess that's just not reality nor "real life"...
Took my full labs this past Sunday, and will meet with my Dr on Thursday for my Myeloma status. I'll update you here on Halloween. Hoping I don't get spooky results :))
My immune system continues to roller coaster and mainly plummet low. Currently my WBC is 2.3, ANC 1.84, RBC 3.64, Platelets 125, HGB, 12.5 Fortunately organ status still good, with Creatinine .71, GFR 93, and all other Liver and Kidney functions in the normal range. Today begin's Monday's chemo crash, so I don't have much "helium", and not looking forward to the continued crash tomorrow.
I have an early online Myeloma conference meeting tomorrow morning, and not sure how well I will feel to participate in it. I miss all my "professional" activities, I miss connecting with people on a deeper level, and I miss participating in intellectually stimulating environments. But I can only do so much now, and I have accepted I just cannot do what I used to do, nor what my mind wants to do. Even after almost 10 years, it's still so surreal how my life has changed on every level. But I am deeply grateful for so much, as frustrated as I am...
Ok friends, I'll be back with my Myeloma status labs...
Thank you for checking in, and caring about my story as you do :))
I wound up converting my In-person Dr appointment to a Phone appointment, as I was just too beat up and exhausted, was having my usual GI cleanse crash side effects, and just didn't want to risk getting on the crazy LA freeways with the fires, power outages, etc, still happening! Thankfully my Dr is wonderful that way, and we viewed my MM results on the phone and online together.
Well, that's my status on this Halloween 2019
Hope you had a wonderful October, and cheers to November festivities without Drama, right :))
Saturday, October 19, 2019
Hello 10.19.19... how can it be a 9 already...
Time, precious time.
Time never standing still.
Our life on this earth, measured in priceless moments, increments of ticking time...
Time spent, time passing, timing is everything...
Life passing by, always,...
My time, your time, their time, everyone's time.
Timing is Everything...
Precious time, irreversible forward motion time.
Me,... always... living in a suspended wait and see mode.
One Day at a Time is all I can do...
Some say "time heals".
For me, "time steals"...
We can't stop the march of time, and that which it decimates in it's path.
No, don't look back... too painful.
No, don't look "forward"... to "then", "when", or "anything"...
Just Be... in The Now, for now...
Sometimes I wish I wasn't so deep. Sometimes I wonder what life would be like, just living on the surface, gliding along, not processing life on the deep level that I do. Are those that glide along "superficially", Masters at repressing their deep thoughts? Are they "Numb Experts", who've mastered the ability to suppress, skillfully not "allowing" themselves to process the depth of their life experiences?
Yes, I suppose this is how most of the world survives... Suppress, Repress, Bury, Deny, Numb Yourself... I haven't known how one just lives on the "surface"... but I am learning... perhaps numb, and superficial is the trick to survival?
I have always been a deep thinker. I came from a family of deep, analytical thinkers. Educated parents that were always thinking, analyzing, processing, posing questions, learning, researching, wondering, discussing... From the beginning of time, I was always a thinker, processer of everything and everyone. Always wondering who's thinking what, about what, because of why. Why this, why that. How come? Why did this happen, why did that happen. Why are we who we are, and where we are, doing what we are? Always why and how come on so many levels.
My world of "why's" has dramatically changed. I used to analyze everything and everyone Psychologically. Now I analyze everything Medically. Why did all this happen. What really is Happening. What really is happening Inside us? Why. How come. What will happen. When will "it" happen. What will the "it" be? What, what, what; Why, why, why...
For me, so much beauty to see, experience. So much potential everywhere, so much to live for... yet so much sabotage, everywhere, on every level.
Right now, as I write, nature around me is still. Wind is calm, Fires are suppressed. Trees are still and quiet. Fall is coming. The leaves on everything are older, more dried out looking. Thankfully the awful fly season with the horses is passing. The Tortoise is considering Hibernation. He has to a degree hibernated, but then it warms up again, and he comes out. The extremes of temperature has arrived. Warm, too warm during the day. Cool, often too cool at night, when I let the little doggies out to pee last time for the night. The Moon has been bright and big. For whatever reason, the Moon gives me hope, energy, calm, peace and serenity. My "flashlight" from the Heavens, connecting me to "beyond"... The nights always give me a sense all will be ok...
Mornings are beautiful. Hope for a new day. Always hope that things will be calm, no drama. Sadly, I want nothing to have to navigate, micromanage, process, do, be in charge of. No challenges please. I don't want to be "boss-lady", but I am. Responsible for too many lives. But I am, and will be until they cross the bridge to the "next level". Me included. I am responsible for me. I've realized am my own caregiver now.
Recently 2 of our little chickens passed. I don't know why. Earlier in the week, we found 1 dead in the Chicken Yard. I felt so sad I didn't see she was not well. So many not well around here, including me. She passed and I don't know why. Next her sister passed some time last night or this morning. Our morning "animal caregiver" found her gone. I had put her and her remaining sister in the little chicken house inside the the larger chicken yard the other day, when I saw she was not well. Not sure what is wrong with them. They are little grey Bantams, given to me in 2016 by a neighbor, along with the other 3 larger iridescent black/gold hens. All living creatures can feel illness and pain, but only humans can communicate it in words. We are lucky for that, as domesticated animals rely on their humans for help and relief. So many of our animals are "seniors". They have a great life, but I dread the responsibility of their old age illnesses, especially the horses, since they are so big...
Wednesday, October 9, 2019
So much to say, but I think I've said it all previously.
So much emotion, so much change, so much to process and digest.
So much sadness, yet so much to be glad for and grateful for.
Life changes each day, yet some things remain the same...
Sunday, September 29, 2019
How are we at 9.29.19 !
How is it the end of September already!
How can it be that I am only 3 months away from my 10 year life changing Myeloma diagnosis!
I wasn't supposed to be here still!!
How am I still here and as "Ok" as I am?!
How is it my body is strong enough to battle Myeloma for over 10 years now?
How is it my body can withstand all the powerful chemo chemicals I have pummeled it with?
How is it I am able to handle all this physiologically and psychologically?
How is it I am still here?
Daily, I am amazed, surprised, shocked, I am still HERE...
I am so grateful I am!
I think about so many things that have contributed to my survival. But who knows what has really saved my life...
Chemo for sure!
Genetics on some level?
Previous "good health"?
Low stress? Noooo!!! LOL... I have way too much stress!
One thing I know for sure, is that I am very very very careful with not getting sick, and I de-cootie everything around and near me, humans especially! Animals I don't worry as much about!
How have I survived this long WITH MY BODY TRYING TO KILL ME DAILY!
Cancer, especially Myeloma, is a very powerful mutating enemy. How can I still be as alive as I am, with these killer cells permeating my entire self? Seriously, my entire physiological being!
Would be so fascinating to "really know" what is going on inside me on a bio-chem, cellular level. You know those high tech medical cameras used for surgeries? Or other medical evaluation tools that can look inside us, or those computer reenactments, like on the TV show "Monsters Inside Me"... Wouldn't it be incredible to be able to see our cells actually mutating and morphing, and actually see how Myeloma grows or invades our healthy cells? Well maybe not everyone would like to see this, but I sure would :))
I know how I'm still alive...
Must be my amazing eating habits I developed AFTER my Myeloma diagnosis... aahhahahaa... I'm on the "See-Food" Diet ;)) I See It, and if it appeals to me I eat it :)) Anything goes on Dex Steroid Day LOL. Crash days... ugh... minimal everything, just trying to hydrate and eat something that won't make me more nauseated. When people ask me my "secret to my success" , or how I'm not "steroid-bloated-fat", I reply... "eat anything you want, anything in moderation". Balance, nothing extreme. Some days Broccoli, some days Ice Cream. But in all seriousness, I do eat healthy, but I don't do supplements, or trendy diets or current fad ingredients. I don't do daily meat/fish, yet I do focus on Protein, as I was mostly Vegetarian BEFORE my Myeloma diagnosis. Now I do a lot of "Premier Protein Shakes" with my pills daily. Often eggs, cottage cheese, cheese, yogurt, etc. Lots of watered down pure Cranberry juice, And I do like breads, but I control myself on those, as on steroid days I could eat a whole loaf of warm Cinnamon or Lemon Bread without blinking, but I don't allow myself... I don't do a lot of fresh fruits or veggies, as I am very very cautious about bacterial contamination in Fresh things. I mainly do frozen cooked things. With an extra radiation zap! So who knows what is keeping me alive, but I'll take it...
And while updating this post, my Labs from earlier today came in, and they just blow me away how "good" they are. Well not GOOD for the HEALTHY person, but "Good" for me! All my organ stats good. WBC always low in the 2's unfortunately, RBC low, but most all the others Near normal! Creatinine (good) low. And shockingly my Beta2Microglobulin came in... still in the NORMAL range! Wow! I'm so shocked. Guess me and 40mg Dex steroids, Velcade and Cyclophosphamide are a great Myeloma Killing Team! Insane how I do ok on powerful chemicals. I've been on this triplet for a Whole Year Now!!! Wow!! And on chemo, immunotherapies for almost 10 years now. Whew!
Tell me your story...
I know there are so many amazing survivors out there, with incredible stories too! I'd love to hear how you are, and what treatment (or not) you're on :))
Thanks for checking in and caring as you do!
Thursday, September 19, 2019
Every night, after the challenges of the day, I "escort" the 3 little doggies outside for their nightly pee. They're so funny how they won't "do their business" without me actually walking out with them. But this is how I get to see and feel the magic of night. This is how I get to see and feel the moon, that most miss, by going to bed early. My nightly routine has become me putting Jim to bed, sometimes easy, sometimes an ordeal... more an ordeal when I am not well from weekly chemo side effects. You know that feeling when you Just Want To Be In Bed.... Like Now! And you don't want to deal with Any Thing Else? That's my Tuesday and Wednesday nights. The yucky side effects creeping in, dragging me down, sucking me into awfulness. Nausea, achyness, swollen, bloat, that metallic taste in my mouth, headachy. That over-all chemo crash yuckiness, the punched in the gut, I might get "sick" feeling,... but when I'm outside, no matter how awful I feel, the moon and the beauty of the night, somehow replenishes my spirit and gives me hope to move forward to yet another day.
Monday, September 9, 2019
It's crazy Treatment Day, with a side of Roids!
Yes, it's Monday Medical Madness Day with 40mg Dexamethasone Steroids, so I'm flying high and wanting to have fun, in all this crazy illness insanity between me and my hubby!
I 'll detail my current Myeloma status labs below, after my Velcade appointment. I do screenshots from the Kaiser website, then download, then upload, and hope to find time with all my hubby's "demands" LOL!!! It's like I have a 180 pound Toddler, who wants to follow me everywhere and try to talk about things, but it's mostly "nonsense" coming out of his mouth :(( But I can read his mind after 39 years, so I figure out what he's trying to convey. So so tragic. Losing mental functionality is so awful... but all this stupid cancer stuff is too. I just can't wrap my head around both our terminal, incurable illnesses. But I'm doing better now, not having the intense meltdowns I did a few months ago. Acceptance and moving forward daily, is key to survival...
I used to love to write my blogs late a night, when the house was quiet, and he was asleep in his chair, or in bed, the doggies and all the critters sleeping, while I had the windows open, listening to the summer breeze, crickets and the hoot owls hooting... so peaceful, so serene...
NOW... omg, I NEVER get any time to myself... but that's another story perhaps for a different post.
Screenshots below :))
Organ function stats
And you know what... the results are "shockingly" ok considering all the STRESSSSSSS, super random eating I do, and all the non stop, I never get to rest, never have time to be a "cancer patient" lifestyle I have here. Except on days 2, 3, 4 after Velcade, Dex, Cytoxan, I do feel kinda "gross", so I do sometimes, just have to sit and feel awful.... BUT NOT TODAY, THANK YOU 40mg DexaMETHasone :))
HERE THEY ARE!!!
If you're friends, family or happily not touched by all this medical insanity, I hope you are having a wonderful end of your summer, and all is good with you and yours!
There currently are more than 300 clinical trials ongoing around the world that are investigating treatments for multiple myeloma and looking for patient participants. Most of these trials are exploring new myeloma therapies that have not yet been approved for use outside of clinical trials, and many of these “investigational” therapies, as they often are called, have the potential to be extremely effective.
Thursday, August 29, 2019
I cannot believe it's the end of August, and I almost forgot to post today, which is so unlike me . I also can't believe how time has slipped by so fast and I never updated my past post... but yet again,, if I had shared everything that has gone on before and since my last post... you'd get why I wasn't able to finish that post, or even write my update now.
And even trying to do this now, I have a blazing headache, and I'm more exhausted than I've been in forever, still slightly nauseated from Monday's Dex, Velcade, Cytoxan, and I still have to postpone a detailed update because I'm so exhausted from all the fast track insanity that's gone on in my life in the last month!
Well that quote is not entirely true, lol, but close. Actually, I'm too actively involved in my life, because so much is going on! There are times I just need to stop and "just be a cancer patient", but my life doesn't give me that chance!
So here's the headlines of what I wanted to write about, and may eventually be able to!
1- Earlier this month, I actually took the risk and flew to Hawaii for my son's surprise Engagement. What convinced me to go, was his heartfelt comment... "Mom, you're the "only" parent "left"...
2- I don't fly because of my terribly compromised immune system, so this was a HUGE RISK FOR ME
3- This was an Epic Surprise for his girlfriend/fiancee as both her parents have passed..., truly a once in a lifetime event to do this... so I mustered my fears and cautions and went... and so far... knock on wood as they say,... I'm still ok. Don't feel great, but I don't think I'm sick. Just exhausted and "chemo crash sick"
4- Prior to that, and I really hadn't shared with anyone, local, personal, or public... we moved my husband to a Memory Care facility
5- I picked "The Best", 5 star place for him, we moved him in mid July, and it's been the craziest adventure ever since
6- I visited him almost every day, except on my worst chemo crash days
7- Visiting him every day sure gave me a deep insight into those suffering, and I mean SUFFERING from Alzheimer's, Dementia, etc
6- I actually began to feel like a "resident" myself,... super weird, sad, awful, experience
7- Lived with "illness" on so many levels, every day
8- Really felt the difference between what it means to BATTLE Cancer vs SUFFER from a Brain Disease
9- As I've mentioned before, as awful as Cancer is, I'll take it over a Brain Disease
10- Moved my husband OUT of this Memory Care place this past Friday night
11- Hired caregivers at home for 7 days, 12 hour shifts
12- I'm so beat up mentally and physically, I can't even begin to describe all the detail...
13- But as always, I remain so very grateful on so many levels...
14- Soon I will catch up, and really share all this insanity with all of you... if you want to hear the full stories...
Monday, August 19, 2019
I have a BIG story for you :))
Friday, August 9, 2019
Had my monthly Dr appointment today via phone. I've done this several times now, and it sure beats fighting crazy traffic on the ridiculous LA freeways! I'm happy to report this means good news for my Myeloma status, which I am incredulous about, especially with all the stress, lack of sleep, extreme emotions, etc, related to my husband's medical decline...
My Dr released my labs online, and I will post all my important Myeloma labs
All the doggies try to steal his meals.
It's crazy how they love this lettuce now,
Probably because they think he's getting
a treat, they're not!!
800mg Cytoxan, Cyclophosphamide
every Monday to infinity!
but that's ok
But that's the price I pay for all this
crazy treatment, that, thank goodness
Amazing, with all these powerful meds,
and amount of myeloma circulating around for almost
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- 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, 15mg 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.