6 Year SCT Anniversary Reflections and Memories plus Current Stats and a Hilarious Story!

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Hello July 2016

Can it really be?
In just a few days, it will be 6 years since my July 5, 2010 Stem Cell Transplant to save my life from Myeloma. Wow 6 years ago!
I was in such a naive, denial fog back then. Truly I really had no clue what my diagnosis really entailed, what I was in for regarding treatments, and how long this journey was going to last. I seriously thought I’d just get some chemo, loose some hair, suffer a bit, eventually be ok, and that would be that. Well that did happen… and life moved forward… but I really thought that would be it. I just didn’t connect with my incurable diagnosis, and long term treatment life sentence.

Well here I am 6+ years later, still in this battle, still doing chemo, still losing my hair, and even more exhausted than ever, but more in touch than ever with what this cancer journey really is. It is forever. Myeloma is forever. Chemo is forever. Being in treatment is forever. A crazy lifestyle that I will never get used to. But so thankful I am here for my 6th Stem Cell Transplant Anniversary!

Reflecting on anniversary #6 sure makes me grateful and thankful to still be alive. Back in 2010, I think my statistics were quite grim. My doctors really didn’t want to say what my timeline might be, but they did always refer to my case as “high risk”. I’m pretty proud to be here 6.5 years later after diagnosis. So many I know through blogs, myeloma sites, support groups, the chemo lab etc, sadly are not. Some go faster than others, and some have longevity that blows my mind. I battle forward daily, accept my reality better each day, each treatment, and each time I receive my blood test results.

July 5, 2016. My 6 year Stem Cell Transplant anniversary. I think that’s pretty remarkable to have survived this deadly cancer 6.5 years!

Here’s a quick little trot down memory lane of that life saving experience. 

Here I am after my Hickman Catheter surgery June 2010

I had no idea this thing would be so invasive
and eventually cause me tons of SCT inpatient complications
with the lovely Staphylococcus Aureus, that nearly killed me

In prep for my SCT:
Thank you Nurse Jan for all our Neupogen injection adventures
and helping build my stemmies up for collection

After more than a week of Neupogen,
my very abundant stemmies were ready for harvesting

Here they are! My 9.5 million stemmies collected
in just 2 days,  June 2010

Soon Cytoxan got the best of my hair,
and in prep for Melphalan, bye bye blonde pony tail
Thank you Christine

Hello City of Hope inpatient status
I’m all puffed up from Dex steroids and hydration fluids
Hello 2 days of high dose Melphalan killer chemo

My sweet chemo nurses chaperoning me outside my isolation room
on the 4th of July

July 5, 2010
Hello Stem Cell Transplant infusion- 
There’s my sanitized life saving stemmies, special delivery!
Truly, I had no idea what I was in for, and what the “crash” is all about
If you want to read my journey, check out my June and July 2010 blog posts

And now for my current July 2016 status:
Well… you all probably guessed that my overly optimistic (naive) perspective, along with my low dose approach, my skipping treatments, taking breaks because I have too much to do, and those dang chemo treatments interrupt my life, along with my I’ll be just fine, never mind cancer attitude… eventually caught up with me… So here I am reporting in, that myeloma did in fact progress this June. Yes, you can say: “told you so Julie”! Here’s my numerical reality check:
 
(My type of Myeloma “trends” via my IgA and M Protein levels)
(Immunoglobulins explanation)
   
(Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230)

Date                      IgA        IgG         IgM


10/18/15              1890
      240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:

11/18/15              1440
      233         < 18
12/2/15                862
        230         < 18
12/30/15              482
        262         < 18
1/18/16                426
        228         < 18
1/27/16                432
        221         < 18
2/10/16                551
        227         < 18
2/28/16                635
        226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17

5/15/16                808         232         < 17
6/23/16               1140!!      267         < 17
                           Yikes!

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 … Zero


July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT: 
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That’s a BIG upward Trend in just one month!
June = 1.06
             uh oh… :((( 

Ok, don’t yell at me too much… I have enough grief from my family, medical staff and friends. Yes, I’m super stubborn about treatment, scared to increase my doses because of fear of organ failure, and I’m scared of worse side effects than I already experience, etc. (Barely made it to and from the June weddings due to GI catastrophes!) 

But I got the message loud and clear yesterday at my monthly oncology meeting, that I really do need to up my Kyrprolis dose. So yes I will. I will start the higher dose this coming week, ironically on July 5, my 6 year SCT anniversary day! How appropriate and ironic is that! Additionally, I confessed that I had been taking a full break of everything on my Kyprolis off week, and I wasn’t taking my weekly Dex steroids on my break week. Ugh, I just wanted a few days to feel a bit “normal”. Ok, Ok, I learned my lesson. Myeloma is stronger than me, and I have to behave. So no more medication breaks for me. Here goes more intense Kyprolis beginning next week, and dang you Dex, every darn week. I get the message myeloma. I can’t slack off, let you become more powerful and win. Not a happy camper here, but my blood work is my reality check. I will behave this month and see what happens. Promise.

 Have you ever seen a multiple flower sunflower plant?
We can’t believe the dozens of sunflowers growing from one stalk!

So beautiful! I’m so lucky to still be here to inhale life like this. 

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UPDATE!!! HILARIOUS STORY!!! 
So just a bit ago, I was outside preparing our horse arena for a dump truck delivery of sand. (Yes, the horses have it really cushy out there.) We keep the corral very clean, picking up the poop 2x per day. Don’t laugh, but this is my source of exercise. Walking, scooping, lifting, walking, scooping, lifting… repeat, repeat, repeat… I purposely put the the “green waste” trash cans at the opposite sides of the corral for additional FitBit Steps.  

 Today being chemo crash day, I’m draggy, groggy, dizzy and just not feeling great, but had a lot happening outside, so I didn’t have the choice to just park myself inside, as I should have. Yep, I really should have just stayed inside, because this craziness just happened to me… omg!! so ridiculous, so dangerous, but so incredibly hilarious!

Here’s the story:

I went to move the horse poop container, stupidly, with the lid open, hanging down, when suddenly I tripped on it, or it caught on a rock, or my foot got caught.. and boom, over the can went, catching me, tripping me, throwing me half on top, and half in the can, FULL ON FACE PLANT INTO THE HORSE POOP, into the trash can face first! My face got caught on the edge of the can, pushing my neck backwards, as my body splayed across the can.. then I fully slipped into the manure, head first!  

I couldn’t believe what was happening, and I truly thought I had broken my neck, as I couldn’t move for half a second. How I got myself out, I don’t know. But I do know this was the stupidest, yet most hilarious thing I have ever had happen to me. Immune compromised chemo cancer patient falls head first into a trash bin full of horse poop! Yep, that’s my life! I am so bruised, so sore, so achy. The left side of my face is scratched, bruised, bleeding and swollen. Probably have bacteria growing in it now… my legs and arms are bruised and cut and I have a killer headache. But, no time to clean up and whine… the dump truck delivery guy pulls up, as I’m wiping off green poop and red blood. 

Want to see a picture?… I think I should go shower first…   
My life… it just gets more hilarious each day! 

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Ok, here I am with my lovely facial injuries. I normally wouldn’t post a pic of me looking like this, as I am a bit vain, but it’s too ridiculous and funny to not post. I also have bruises on my left arm and leg and my back and neck are killing me :(( Sooooooo stupid of me! I’m not very good at selfies either! Note how thin my hair is too..

I will be more black and blue in the days to come
 

And for your final laugh, just picture a trash can like this, filled with horse manure, tipped over, with me head first into it! Seriously ridiculous! An immune compromised cancer patient on chemo, head first into horse poop! I hurt so much where I hit, but my gut hurts more from laughing at what I did to myself!!! 




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