Spooky Lab Results Coming On Halloween...

10.29.19

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"...

So grateful for all the brave

First Responders!

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 :))

Did I get a Myeloma Trick

Or a Treat 

for a change??? :))

Here's my Spooky results:

IMMUNOGLOBULINS

2/14/     3/14/     4/11/     5/9/          6/6/        7/3/        8/4/        9/2/      9/29/     10/27/2019

IGA 70 - 400 mg/dL

1,230      1,260      1,440      690         740         676         654         638         731         648

IGG 700 - 1,600 mg/dL

87           85           98           95           88           150         84           75           85           78

IGM 40 - 230 mg/dL

< 18        < 18        < 18        < 17        < 17        < 17        < 18        < 18        < 18     < 18

IMMUNOFIXATION RESULT

PROTEIN, URINE, QN     

Me = 6.0 mg/dL        (normal =  less than 11.0 mg/dL)

No monoclonal protein detected

                                                                                     ME                RANGE

KAPPA LIGHT CHAIN, FREE                            2 mg/L               3 - 19 mg/L

LAMBDA LIGHT CHAIN, FREE, SER/PLAS     2 mg/L               6 - 26 mg/L

KAPPA/LAMBDA, FREE RATIO                         Not Applicable  

INTERPRETATION, IMMUNOELECTROPHORESIS

                                                                                   ME                  RANGE

TOTAL PROTEIN                                                  6.2 g/dL        6.0 - 8.0   g/dL

ALBUMIN                                                            3.92 g/dL      3.40 - 4.90 g/dL   

ALPHA-1-GLOBULIN, ELECTROPHORESIS   0.26 g/dL      0.17 - 0.50 g/dL

ALPHA-2-GLOBULIN, ELECTROPHORESIS   0.67 g/dL      0.55 - 1.00 g/dL

BETA GLOBULIN, ELECTROPHORESIS          1.27 g/dL      0.65 - 1.10 g/dL

GAMMA GLOBULIN, ELECTROPHORESIS      0.07 g/dL     0.70 - 1.60 g/dL

M-PROTEIN, SERUM                                           0.59 g/dL       0.00 - 0.00 g/dL

PROTEIN ELECTROPHORESIS RESULT, SERUM      Abnormal            

Hopefully you can make sense of these crazy Myeloma stats. You'll see my IGA is Not Normal, and M Protein is Not Normal, BUT it's sure better than months, years ago. Go 40mg Dex Steroids, Velcade injections, and 400mg Cytoxan Cyclophosphamide chemo!!

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 :))

Moving Forward Always- Time, You Are Our Friend and Enemy

10.19.19

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.
Look back
No, don't look back... too painful.
Look forward
No, don't look "forward"... to "then", "when", or "anything"...
Just Be... in The Now, for now...
Simply Be...

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...

One day...

these will be the only horses

I will be able to have here

So all is wonderful, yet awful; beautiful, yet tragic; happy yet sad; good yet bad. Weeky I meet new Myeloma patients. Daily I read, hear of treatment successes and failures. Daily is a struggle for so many. I knew this all my life, but I'm realizing now more than ever, that I had a semblance of control in my life as Counselor. I always felt like a healer, like I could impact change, happiness, health, changes in people's lives. I still do, but I often feel so out of control of everything. But I accept it, I don't fight it. I get it. Remember my quote: "You can't control the things you can't control"... so analyze it, understand it, feel it, deal with it, absorb it, ... Then Let It Go... we're in control of so little... only how we perceive it, process it, and deal with it,...

New News is Old News, Let the Roller Coaster Continue

10.9.19

Hello October!
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...

IGA up again ^

Coming close to 2x the High end of normal :((

M Protein going up too

@  .61

Normal = 0.0

Not happy about it, but not terribly worried...

I'm always amazed though that my organ status labs are good. 

Creatinine good, etc. 

WBC and RBC, etc always Abnormal, but my Dr isn't too worried. 

My Abnormal is Normal for me LOL

I am a steady (dangerous) roller coaster, which isn't a "bad thing" ...

This past Monday's Velcade was injection # 52 !

That makes it a year I've been on it. Ahhmaaazing!

Cytoxan (Cyclophosphamide) was added a few weeks later, so it's almost a year I've been on this triplet combo, with the 40mg Dexamethasone!

I'm pretty proud of my body's ability to tolerate this, and that it's still effective after this amount of time. Hoping to remain on this for much longer, as it's not exactly fun, but it's not awful awful, and gives me Quality of Life several days a week.  

My life is taking care of "everything" now. I'm pretty beat up from being in charge of Everything, "micromanaging" Everything and Everyone. Never wanted to be "Boss-Lady"). 

Reflecting back, it's amazing how "smooth" our life was before both our illnesses. Not to mention how much Jim did before and after my diagnosis. Think about your family, relationships, and distribution of daily life chores and activities. Think about who does what, and how much each does. We were such a great team. We never sat down and actually divided life chores up, things just evolved as they did. Now I literally do "everything". Yes I have help from amazing caregivers, my adult kids, and other "helpers", but I do Everything to keep our household and ranch running, us and the animals alive and eating. Everything...  I do Everything!

Look in the hay, feed wagon/wheelbarrow... Yep, that's my Cytoxan pills and a protein shake. Things are so busy, I brought my pills outside with me to take as I did the horse chores. I had been to my Velcade infusion earlier, then errands, then a quick visit with friends, that had been planned before I knew my Monday caregiver Chris wouldn't be available that day. Our daughter Alissa came to "dad-sit" while I was gone, and I brought them food home, so I ran outside to do the chores, while she continued to watch him. I laugh and cry and at my life and what has happened to us. I have so much that is wonderful, yet so much loss... 

Yes, I took my Chemo Pills, while feeding the horses! How funny, and ironic is that. 

Until next time...

Hoping all is good with all of you, and if you're a Myeloma buddy, hoping your treatments are going well.