Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Tuesday, July 26, 2016

Where I Was, How I Was July 2010 vs 6 years later- July 2016

Hello July 26, 2016

I'm still here Myeloma. You're still trying to get me to succumb. But I'm not going to, so there!

I've always been a record keeping, sentimental data collecting geek. I still write important milestones down on a physical paper calendar, and probably always will, no matter how cool technology becomes. I've always written down sentimental important personal and family milestones on some sort of paper calendar. Looking back, I'm really glad I was able to record a bit of my July 2010 Stem Cell Transplant journey via this blog and also my trusty old fashioned paper calendar. I didn't blog in as much detail in the beginning. I wish I had, but I didn't, because I felt pretty crummy 6 years ago this month. Really really crummy! Also, I was new to blogging and I just didn't detail all my "private thoughts" out there in cyberspace as I do now LOL.  I'm a different person now, then I was pre myeloma diagnosis.

This cancer journey changes you. Battling Myeloma for 6.7 years changes you. Treating and surviving cancer changes you. Staring death in the face every day, every treatment, every blood test result, changes you. I don't feel so private about my private journey any more. I feel so many can learn from us Myeloma-Veterans. I've learned so much and benefited so much from from all of Myelomaville's postings out there. I so appreciate everyone telling their whole story, detailing their medications and treatments, their blood status numbers, who they are and how they deal with Myeloma. Who we are beyond Myeloma is also so interesting. We all have so much in common regarding our Myeloma journey, that blogging about our crazy medical details, unwanted side effects, aches and pains, life challenges, treatment side effects and (of course) our GI symptoms is common... and sadly funny. We really are a remarkable bunch of warriors, battling this "invisible" monster that is trying to do us in. Writing to all of you, about my struggles and successes, is just cathartic.

Thank you paper calendar for reminding me that 6 years ago today, July 26, 2010, I bit the scary medical bullet and accepted a Picc Line to replace all the dysfunctional individual hand and arm IV lines, that blew up every other day due to the intensity of all the zillions of antibiotic treatments from my septic Hickman Catheter. Thank you paper calendar for reminding me that my Emergency Bedside Surgery to remove my horribly infected Hickman Catheter was July 14, 2010. Thank you paper calendar for reminding how sick I became after my immune system plummeted to zero from the intensity of Melphalan chemo. Thank you paper calendar for reminding me of how much I didn't and couldn't write down, because of how sick I was, how awful I felt and how I didn't have much energy, of much of me left at all. Minuscule energy just to survive and do basic tasks was all I could muster July 2010.
Thank you paper calendar for reminding me that I was released from City of Hope hospital on July 28, 2010. Thank you paper calendar for reminding me of my month long battle to survive my Autologous Stem Cell Transplant. Survive I did Myeloma, because here I am, blogging 6.7 years later.

I'm a sentimental hoarder in so many ways, and I'm glad I am. I have boxes and boxes, files and files of all my Myeloma paperwork and records dating back to December 2009. Yes I view everything online, and actually that's my preference. But I still like the physical paper version too. I have all my lab results and treatment receipts organized in zip lock bags with monthly dates. I just like that I can look at the paper results when I want too. I like having the symbolism of my paperwork in little plastic "hazardous chemotherapy" caution bags that Revlimid was mailed in. Now on Kyprolis, I just use regular zip lock bags.. but once in a while... I have "acquired" one of these gems... sshhh...

  

Ok, it's late and I am waning ... I will finish posting tomorrow. My recent labs are surprising...
As always, I cannot believe I am on this journey, and I cannot believe that Myeloma has not just disappeared from my life... but when I am tired and weak, always thirsty, have crazy side effects, and cannot do 3/4 of the things I did pre 2008, and I go to chemotherapy 2x per week, 3 weeks per month...  I realize I do have incurable cancer.

CHECK BACK and I will finish my story, AND POST MY CURRENT IgA and M Protein results. Interesting... not happy, surprising... and did I mention... I did accept beginning the higher dose of Kyprolis??

Thank you so much for reading and caring!!!
CHECK BACK... I'LL BE BACK!!

And I did this....




In the meantime, read these great articles:

http://www.myelomacrowd.org/myeloma-101-proteasome-inhibitors-work/


http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/


How you help us you crazymaking Dexamethasone! 



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


Wednesday, July 6, 2016

6 years Still Winning and Here we Go Higher Dose Kyprolis

July 5, 2010 = Stem Cell Transplant Infusion success
July 5, 2016 = Still here Myeloma! Who's Winning?

July 5, 2016 - Began higher dose Kyprolis 
July 6, 2016 - 2nd infusion of higher dose Kyprolis.

 7.6.16

6 years ago today I was surprised to be feeling rather ok after my completely non-dramatic, anti-climatic Stem Cell Transplant Infusion. Seems like more of a Big Deal is made of the Stem Cell Infusion itself, then the intense cancer killing chemo infusions preceding the stem cell transplant-infusion.  I know now (and sure learned then), that it's really the 2 days of high dose Melphalan chemo that becomes the monster. Melphalan completely depletes the patient's immune system, systemically killing off the good and the bad cells. So many suffer so terribly from the intense chemo, which is dosed to render myeloma dead and dysfunctional. Our stem cells are infused back to regenerate our system, re-boot us to remission, hopefully eliminating, suppressing the cancerous myeloma cells for a long time. (This is a very simplistic explanation, for the real, medical scientific details, just Google in Autologous Stem Cell Transplant, and you'll get all the detailed details of the procedure!) 

 7.5.2010 
Stem Cell Delivery!

Jim and Alissa there to share in the Big Moment!

I remember feeling relatively ok for a few days after the high dose chemo and SCT infusion, wondering what the Big Deal was about this procedure. Nurses and Doctors continually "warned" us patients that the "crash" (Nadir) is coming.. be warned, be ready. Follow all the recommendations for sanitized health. Wash, cleanse inside and out, swish the oral antibiotics, hydrate, move around, don't get bed ridden, do whatever you can to stay strong. Watch out for the evil mouth sores (mucositis). Eat well, but cautiously. I remember having stereo vomiting in surround sound, from the adjoining rooms on both sides of me. We all had private rooms, but the walls weren't perfectly insulated. I remember keeping the TV on 24/7 to drown out the suffering of my invisible neighbors. I felt so bad for their suffering. I vowed to not wind up like that. I barely ate, paying attention to my body's signals. I ate simply and minimally. I remember the cafe staff calling if we didn't order each meal. I learned to order something, just to order, just have it, just be left alone, but always appreciating their caring protocol. Plain baked potatoes. Clear juices thinned with water. Cream of Wheat. Plain oatmeal. Canned fruit. Nothing fresh allowed. Too much bacterial risk. Our diets were called the "anti microbial diet", or the "immunocompromised antibacterial diet", or the "Neutropenic Diet" (Google those too!). The whole point is to avoid infection at all costs, as when Melphalan thoroughly kicks your systems butt, you have ZERO immune system protection. No internal Army, Navy, Marines, Seals or Swat team to protect you. I remember feeling ok at first... then each day a little worse, then continually worse... feeling blah, achy, fatigued, sickly, depleted...

The last time I left my room for 3 weeks
 to walk my family to the elevator

Your body plummets to outrageously low blood counts. You begin to feel so awful, so sick, so yucky. It's indescribable if you've never been that sick, that weak, that incredible weakness and fatigue like non other. My goal daily was to get out of bed, grab my IV stand and (barely) make it to the bathroom, or just make it out of bed to the chair by the window. This was the beginning of my lovely lower GI issues. And I went down hill from there. And down hill I went and went. My Hickman Catheter became septicly infected. My chest insertion site was terribly infected. I had a constant crazy fever. I was really really sick. My medical team realized this. They wasted no time calling a surgeon to my room, and I had emergency bedside surgery to remove my horribly infected Hickman Catheter. I was told this was the worst Hickman Catheter infection they had ever seen. I was really really sick. I felt awful. I had no immune system to fight. My IV stand grew to bags and bags of IV antibiotics. 5 or 6 different antibiotics to keep me alive. Liquid IV nutrition and hydration at this time too. My surgery wound was awful, disgusting, seeping, oozzing infected poison. It felt gross and looked gross. This was between the 2nd and 3rd weeks. Medications now administered via hand and arm IVs. The medications blew up my poor veins. I had to have new IVs inserted daily. (That was was a big deal to me then, now, eh, whatever! used to it!) I refused a Port or Picc line as I was terrified to get another mainline infection. Oh how I suffered. I didn't want anyone to come see me. I told my family not to bother coming to see me. They came anyway. I tried to visit and talk, but eventually told them if they come, just sit, tell me stories, watch TV with me, nap with me. I watched more TV during July 2010 then I had ever watched in my entire life. My TV eventually burned out. The tech team came immediately to fix it. They knew this was our lifeline. They knew we needed the distraction and company. They knew we needed the nonsense noise to save our sanity. 

Slowly my numbers rebounded. Slowly I began to feel a bit better. I began to chat more with the staff. I was so exhausted, so depleted. Funny though, word got around the floor I was a professional counselor, and staff members would come in to chat about their families, issues, college majors and registration. I don't think they realized how awful I felt, as I still had hair, and tried to always put a little make-up on. I always tried to hard to be me. The me before cancer. The me before the "new normal me". I called that time period the "Parade of Professionals", as so many types of caregivers came to see patients. Medical Social Workers. Occupational Therapists. Recreational Therapists. Doctors, Nurses rotating, assessing, recommending, so caring, so concerned. Wonderful, dedicated staff. Shift changes. New faces, tell my story over and over again. So challenged mentally and physically. I was so exhausted. So beat up. Blood tests constantly. Measure what goes in, what comes out. I focused on "Less is More". Less of everything. Keep the eye on the goal Julie. Get well, get home. Build your immune system back up. Get strong, beat this. Eating, drinking was a huge effort. Horrible horrible acid reflux like I'd never ever experienced. Never ever. Eye on the goal. Live in the moment, don't think of the future... too painful right then... How I tried to be so strong, but I was so depleted. I felt I would never get well or never get home.

They let me know the only way I would ever be released would be if I could swallow my meds, and get off the IV meds. Have you ever seen hospital issue Potassium pills. OMG, huge! So I asked for a liquid syringe. OMG that was even more awful. The taste gagged me. I said I would try to eat a banana a day. I said I would try to do a lot of things. I did try. Sometimes successfully, sometimes not. My whole day was trying to get nutrition in, have it stay in me, and make it successfully to my little bathroom just mini steps away. I remember I had Jim bring me juice Popsicles. I would be so parched in the middle of the night. I'd push the buzzer and ask for a Popsicle. That appealed to me and stayed with me. That little event, a huge task. The staff was so wonderful. Always offering help. Me, always too independent. I tried too hard to do too much on my own. 

 Wonderful amazing staff members! 

Keep the TV on. Focus on the goal of getting well and getting home. Home seemed like a fantasy, as distant dream. A non reality. I became very emotional about everything. I didn't want to think about home, my family, my animals, my college life, my life beyond the hospital. Broke my heart, as I felt so broken. Felt like I would never ever recover. When the medical staff talked about my potential release, I begged them to not talk about it, if it wasn't going to happen soon. They told me again, the only way I could be released was to accept a Port or Picc line. Wonderful professionals came in to see me. To describe the procedure. They brought in the BEST technician, nurse, doctor who had been doing this for over 25 years and was going to retire any day. She said I could be her last Picc patient. I finally agreed. I was so scared. Scared of another septic infection. I accepted my situation. I agreed to the Picc line. The procedure was no big deal! Fear can be crippling. I was released a few days later! I don't think I have many pictures from this time period. They may be on my little old Razor phone. I think I deleted so much, as I didn't want the memories. It was a very very painful, challenging time in my life. Being isolated for a month in a hospital. You don't own your life. You are not in control of much of anything. You stare death in face 24/7. You wonder if you'll make it. You feel so awful, then suddenly, so ok. One of my Doctors later told me, he always remembered me, as I was the only patient that never unpacked. Yes, I left my clothes in my "carry on bag", on a chair, and I never unpacked. I never thought I'd be an isolated super sick inpatient for a whole month. I made it myeloma, and here I am recounting my 6 year stem cell transplant anniversary! 

July 5, 2010 - July 5, 2016 


***********

So we'll see how this new regimen of higher dose Kyprolis goes. Of course I was scared and hesitant to increase. Still am. But I did, yesterday and today. Always trying to preserve my organs. Organ failure is too common in myeloma treatments. I know of too many that tried too hard to reach remission. They did, but they over burdened their vital organs and didn't make it. My first day of this higher dose infusion stung a lot. I was dizzy and fuzzy afterwards. I should not have driven home, but I did. Always trying to be too independent. I always follow infusions with a lot of hydration via IV, plain water, and cranberry juice diluted with a lot of water. Cleanse those organs. Today, I asked my nurse to slow the infusion down. That was magic. No pain, just a little stinging. If you do IV infusions, don't rush it. Everyone is rushing about. Rushing to get to the next event. Rushing this, rushing that. Focus on the moment. Breathe. Make the moment matter. Make the moment comfortable. Speak up. I've learned. It's ok to not be strong all the time.

Today's chemo lab higher dose Kyprolis survival selfie. 
I wonder what my "crash" will be, 
when Dex Roids wear off and this kicks my butt..
(Here's a great list of current myeloma meds)

My stupid, ridiculous horse poop trash can tripping and diving injuries are healing. I have lovely purple and yellow bruises on my face, arm and leg. But I am better. I hurt, I'm still swollen, but I am laughing more than I hurt. Live your life. Have fun. Be careful, be deep, be thoughtful, but be silly. Find joy in everything that is joyful to you. Yes, I'm right back out there scooping poop. I laugh at the contrast of being in the chemo lab for serious cancer chemo infusions one moment, then the next I am doing ranch chores. My horses (and all the other animals) have no idea my circumstances. They just want food, water and scratching. I love my life beyond cancer. I am very blessed and very grateful.


It's late, and I wasn't going to ramble and write this much. It just happened. Day 2 Dex to blame lol. It's really late, but so serene and peaceful. I have the windows open, there's a soft warm breeze coming inside. I've been hearing a hoot owl hooting for over an hour. Sounds so magical, mysterious. Makes me feel so alive, so grateful. I never ever forget that I've cheated death for 6.5 years!



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



Friday, July 1, 2016

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

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. 

========================


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! 

=====
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!


Thursday, June 16, 2016

Good Blood? Bad Blood? Stable Blood? It's a Crazy Life, but still a Good Life

Hello 6.16.16 
Just love these numbers today!

Speaking of numbers... I won't find out my treatment status numbers until the end of this month. This next week is my chemo break week (yippee!), so I'll take labs mid week, then get back to Kyprolis infusions the last Monday and Tuesday of June. I meet with my Dr on Wednesday June 29 to consult. Will be interesting to see what myeloma has done this month, with my on-again, off-again Kyprolis/Dex schedule... Each month I get through a chemo cycle, I feel like I've completed a marathon. But a marathon that never ends. Cancer that never ends. Chemo that never ends.

I am constantly processing and analyzing how I am going to treat this monster for the rest of my life. Slow and steady, or more aggressive? Stay the course, or switch up meds as my numbers creep up?
My life has dwindled down so much, and I have so few days where I feel like doing much at all. I'm just so sick of feeling sick all the time. Such a strange way to live, considering how healthy, busy and full my life was pre-myeloma. Truly I am still mystified by my situation and abrupt changes physically, psychologically and professionally. Sorry I mention that all the time. But I go around shaking my head in disbelief so many moments, every day. 


I take my Dex steroids on Mon and Tues and head to the chemo lab for my Kyprolis infusions. So ironic, that on cancer treatment days, I actually feel the best, since I am propped up on steroids. Crazy stuff. I sometimes even feel a bit "normal". That's when I really question my circumstances and wonder what in the world happened to me. But then, I am fully reminded of "what happened to me" on my lovely crash days, such as today, when side effects abound. But, it is what it is, and my motto has always been, "you can't control the things you can't control, so analyze it, process it, examine it... and move forward... always forward"... 

Even when I see my diagnosis in writing, which is always...
It's still so hard to process.. 6.5 years later...
Still so hard to process..

 Even when I'm hooked up to chemo along side my fellow patients-
It's still so hard to accept I have cancer. Can you imagine this life?
But, I just do what I have to do, with robotic acceptance..

 Here's my AMAZING chemo lab nurses-
Just love them so much! Beautiful ladies inside and out!
So dedicated and devoted to all us chemo patients.
Thank You for You in my life!


So not much more to report. 
I have cancer, incurable cancer. 
I'll be on chemo for life. If one treatment stops working, on to another one. 
Always processing my status, my treatments, my options.
My life has radically changed, but I have much to be grateful for. There is so much beauty in this world that I am still privileged to experience.

I may not be able to do much away from my home, but I still have "purpose" in life. Purpose in saving other lives. Purpose in nurturing and caring for little lives that come my way. 
Here's my most recent adoption project: 

These darling little chickies were hatched by a teacher friend of mine as a science project for her elementary class. Before they were incubated, I agreed to adopt any hatchlings. Here they are, just hatched, in their little incubator. The yellow striped one was born Sunday June 5, and the charcoal one on Monday June 6. Nature's miracles! 


Here they are one week later when they were brought to me. I set them up in a cozy enclosure. How do you like my idea of the little swifter duster as their surrogate momma! Just look at their feathers and wings coming in already!


Nature's instincts are just so amazing. These little chickies "just know" what to do. Instinct tells them to peck for food, drink water, snuggle together for warmth (yes I have a heat lamp for them!), even though they would "naturally" be snuggled under momma hen's feathers. These little chickies "just know what to do". So amazing to take part nurturing their lives! 
Cancer can't steal these experiences from me!
 Very imprinted on us humans already. 
So adorable!!


And so I move forward. Always questioning, but always grateful for all the wonderful things in my life that cancer can't steal away from me. Nature inspires me always.  




Here's a few interesting myeloma links for you-

An ocean animal may save our lives! Sea Squirt (Aplidin) Clinical Trial Results Are Promising for Treating Relapsed/Refractory Myeloma

So I'm thinking, if I do need to switch off of Kyprolis to something else... maybe to Pom? Pomalidomide plus low-dose dex should be a standard of care for patients with relapsed/refractory myeloma


Check out these wonderful, helpful, informative myeloma links. 
Whether you are "new" to myeloma, or a "warrior" with "battle scars" like me, or a family member, friend of a patient, a colleague, etc, these websites offer infinite articles of current, amazingly helpful myeloma information: 

Myeloma Crowd: Awesome updates and support
Myeloma Beacon: Myeloma news and updates and blogs and articles  
MMRF: https://www.themmrf.org/ 
IMF: https://myeloma.org/Main.action 

The Cancer MoonShot 2020 Program 
Cancer MoonShot 2020


Thank you Revlimid for saving my life for 5.5 years! Jan 2010 - Oct 2015 

Thank you Kyprolis for saving my life since Nov 2015 to now 6.16.16! 
And of course, I have to mention and thank my best friend and worst enemy Dexamethasone!  






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



Monday, June 6, 2016

Dancing Beyond my Bubble!

Oh what a difference a week makes!

I recovered from my yucky feverish state from last week (see my previous cranky rant), skipped last week's chemo appointments as planned (yes, be mad at me!), then went to a beautiful beach wedding this weekend, felt a bit normal and most importantly had some FUN in my limited life! It's so crazy to feel so awful one week, and then so OK the next. I sure hope the cross contamination contact cooties stay away from me.

Back now to Myelomaville Mondays and Tuesdays. I totally forgot to take my weekly pre-chemo blood tests, and have to get myself together quickly to get there more than an hour early (see my results update below). Not easy for this party girl this morning :)))

Even without the power of Roids, I danced the night away (well kinda lol)
Not much stamina, and my neuropathy almost caused me to trip a few times,
but so worth it to have an evening of celebration and pseudo normalcy!
The beautiful Bride (my cousin) just finished her Pharmacy degree.

6.4.16
Such an awesome day to be out and living.
You know I love symbolism
there's even a Horse on this!


Update- 
Surprisingly my CBC's with Differential and Creatinine were pretty good. WBCs, ANC, Platelets, Hemoglobin, etc, all hovering just below the low end of NORMAL! WhooHoo! Maybe that's why I rebounded from the most recent fever yuk in a week. Goooo immune system for rallying! Interesting how these critical stats, while being on Kyprolis, are better then they've been in a long time.Yet, crazy how my IgA and M-Protein can be rising. Hmm, what's up with a stronger system, but cancer still creeping up?

I will do my full MM blood stats later in the month, after these next 2 weeks of Kyprolis/Dex, then have a status appointment last week of June. So maybe it will be a positive roller coaster this month? I know some may not agree with my philosophy to stay on the lower dose of Kyprolis, which I will continue again this month. It's so important to me to protect my organs from higher dose chemo since I've been treating for over 6.5 years now, and I am fully aware of the "foreverness" of my future myeloma treatments and how harsh this is on our bodies.

When I'm at the chemo lab for infusions, it's interesting to see and hear new chemo lab patient's shock when I tell them I've been in treatment for over 6.5 years, and that my cancer Myeloma is incurable. Seems like most can't wrap their thoughts around that concept, as most have been given a treatment stop date, for a "curable" cancer. Other's reactions to my diagnosis and situation helps me to process my crazy status. Hearing their "shock and awe" really brings it home to me, that I AM a SURVIVOR! 6.5 years is significant to be continually battling cancer!

Everyone thinks I'm "so strong". I'm really not... I just keep moving forward as if I didn't have cancer, as it's still so unbelievable I have cancer, let alone incurable cancer. So I just move forward. Always forward. One day at time. One foot in front of the other. Living life, one challenge at a time.



Thanks for checking in!!



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

Wednesday, June 1, 2016

Sick... again... Sick of being Sick! Caution...

Surprise Surprise, I'm breaking my theme and posting on a different 6 derivation. 6-1-16. Hello June 2016, I'm still here myeloma, and I'm not happy with what you have done to me! Apologies in advance my wonderful invisible blog friends, while I indulge in a mini pitty party venting rant.  

My head has been exploding with thoughts, musings, ponderings, and overall life realizations and recognitions. (Ha! so what else is new, right!) The other day, in my overwhelmed feverish state, (yes I had a fever again!), I was going to post a raw frustrated, depressed, yelling rant about my current circumstances, but you were saved by how awful I felt. I really wanted to unleash and vent, but good thing my lack of health and helium prevented an unfiltered post. This spontaneous post is a "healthier version" lol.

So what the heck happened to me, you ask?
"I Don't Know!" she wanted to scream!
I Really Don't Know What Happened to me! But I felt so awful... again, yes again.
Did I experience an extra long chemo/steroid crash? Did I get public cooties contamination from my break week of marathon, unexpected, out of the ordinary (for me) experiences? Did I have some other freak physiological thing happen? I Don't Know What Happened. But here's what happened:

Following my crazy break-week of activities, the week where I (somewhat) let my antibacterial guard down, where I actually lived life, participated in life and did "normal things", normal things that shouldn't seem so extraordinary at all. Just doing things and going places. Living life normally. "Doing" is often extraordinary to a cancer patient in continuous treatment...
And then... I wound up sick with a weird fever thing! Why Myeloma, Why?

Yes, following my break week, I returned to the chemo lab, had my doctor consultation on Monday, and did my regular Kyprolis + Dex for 2 days. As usual, I began my slow crash decline on Wednesday, feeling more yucky and blah on Thursday. Thought I would rebound a bit Friday, but I didn't. I didn't rebound at all. I felt drained, exhausted and strange. Thought then I would rebound on Saturday, but didn't. I felt so yucky and I couldn't figure it out, but I "forced" myself to think I was ok. I thought, if I do what my "head wants to do", my ill-feeling body, will follow. Go. Go live life I tell myself. Push forward. Go. Try to get out and about, even if for a tiny bit, I tell myself. So I pushed myself forward, Jim and I going for a ride in my lil Bucket List Bug, to visit a friend to deliver my crazy healthy Yam saplings, that had turned into amazing, reaching for the sky, vines. My friend Kathy and her husband Scott were the perfect "adopters", as they had a beautiful thriving garden. These vines grew from yams left too long in our pantry. Amazing! Nature's will to live, on all levels, is so remarkable. These vines, so desperate to live and thrive... just grew and grew! Yes, analogies of life's will to live, surrounds me all the time.


I felt really strange all day. I didn't have much energy or focus. I was dehydrated, parched, headachy, and achy all over. I kept thinking it would pass. I kept thinking I was just exhausted from my past week of "play", piled on top of chemo and steroids, piled on top of the typical evil crash feelings.  Nope Nope Nope. Something weird was going on. But I refused to think I could be "sick".

We left our friend's house after a lovely visit, and I "forced" myself to drive my lil Bug the long way home to "exercise" her just a bit more. Poor lil Bug, never gets out much any more. Never gets to go to car shows anymore. This makes me realize how I have "declined" over the years, becoming more limited each year. As I was driving, I was achy, and headachy, blurry and fuzzy. Just shifting was an effort, where it's usually fun and reminiscent of my Malibu beach days . Everything was an effort. I knew something was up, but I refused to accept it.


We get home, I force myself to do minimal horse and animal chores, all the while knowing, I was not well at all. Something was up. Parched like the desert. Achy, dizzy, yucky. Rumble rumble went the GI. Tried to eat, but something told me not to. Hello bathroom for hours. Hello PeptoBismal. Hello weird GI stuff. Hello dizziness. Hello FEVER! Hello weird heartburn. What the heck? I don't know. I didn't know what was going on. Restless sleep. Not much sleep. Felt really yucky. Yep, I have a FEVER. What The Heck?! A Fever? Nooooo, not again!


So all I could do Sunday and Monday was succumb to my physical awfulness. Everything was an effort. Living was an effort. Everything I needed to do, was an effort. I HATE FEVERS. But I know they have a purpose. I coaxed and cajoled my fragile immune system to rally. I begged my fragile immune system to rally, to fight this invasion of whatever. My fever went from the 99's to the 100's. I thought I was in for a "February Fungus" redo. I pleaded with my body to rally. "Please body, please rally. Please don't get too sick. Please stop making me feel so awful". All I do is suffer. What's up with all this suffering. Why me? What did I do to deserve this. Why am I always sick? Why do I always feel so yucky. Cancer yucky. Chemo yucky. Steroid yucky. Recovery yucky. Why body, why are you doing this to me? Why can't I be ok? Why can't I be normal. Why? Why me? I crashed mentally...

My fever topped, then stopped at 101. Then it began to subside as quickly as it attacked me. Late Monday night into Tuesday I began to see hope again. I began to think I could make it. I began to think life was still worth living. I began to see hope again. I couldn't stand seeing my face in the mirror in the bathroom. What has become of you Julie. You're so sickly, you look awful. Your hair is thinning, your skin looks like "death warmed over" (my dear Mother's term), your life has been taken over by cancer and cancer side effects. The counselor is counseling herself to be ok: This too shall pass. You're better off than so many. You're very fortunate in so many many ways. You've beat myeloma back for 6 and half years now. You can do this Julie. You can be strong. You have so many that look to you for support. You're supposed to be a role model. So many need you. Your story's not over yet. Stop the pitty-party Julie. Buck up. Cowgirl up.

And so slowly I got little better. The achiness subsided. I felt hope again.


Even when I feel awful, I've learned to still try to eat a little something. How can my body rage war against the invaders without fuel. But ugh, not much appealed. And water, ugh. I am so TIRED of drinking drinking drinking water. I am so tired of being so darn thirsty all the time. Sometimes I just rebel, and don't hydrate as I should. Dumb. Well I guess I got paid back for that too, as this stupid fever thing was accompanied by crazy heart burn like non other. Like the type that suddenly wakes you up at night, and you bolt up in bed, startled awake with that weird shocking sizzle in your throat. Oh, yes... I remember you, you stupid awful acid reflux. I remember you from my Stem Cell Transplant side effects Summer 2010. Why oh why is this happening to me.

I'm better today, tonight. But at the depths of my awful feverish yuckiness, I wondered... wondered what is the "purpose" to what I am doing. Six and a half years and counting is a long time to be in continuous treatment, with NO end in sight. No reprieve. No "end date" until my End Date. Incurable cancer is daunting. Overwhelming. Treatments for life, for the rest of my life, if I want to have a longer life. Imagine, on treatments forever and ever. Continuous, continual treatments. Side effects for life. Sickly most of the time, for life. Sudden, random, unexpected GI stuff. Rarely feeling well, for life. Crazy how feeling well takes me by surprise. Imagine yucky side effects for life. Fatigue forever. Imagine all this.. Is that a way to live? Is that living? Is that being alive. I ponder, Quality vs Quantity. It really hits me sometimes. But I know, I must battle forward. I must and I will. But I do now understand why some choose to "not treat". I'm no where near that choice, but I understand it deeply. I know the desperation for "normalcy".

It's Wednesday night 6-1-16. I'm better, and will get better as each day passes. I must! I have weddings to attend, a life to live! But it's back to Mon Tues, Mon Tues, Mon Tues treatments next week, and the cycle of yuk starts anew. My life so limited now, compared to who I used to be. I morn the ol me. My cancer status is still incomprehensible to me. Life limitations have crept in over 7 years. I tried so hard after diagnosis for "normalcy". I tried to accept my "new normal", but my reality impacts me more often now. I don't like it. I don't like it all. The impact of my situation, my condition, my limitations hit me too often, as it seems I feel less well, more frequently. Yet, pulling myself out of my feverish dark cloud, I see the beauty all around me and I am so very grateful to still be here. I regain my hope and optimism. I am one of the lucky ones and I know it! As awful as I often feel, I am better than so many. But I am tired of the battle. Tired of the feeling sick and always fatigued battle. I am tired on so many levels. Tired knowing This Is My Life From Now On...
I will battle forward, not to worry. That's me. That's my nature. I know I am of the very lucky club. I am frustrated, but I am very very fortunate to still be here, as I am, how I am, where I am, and with the options I still have. Truly I am grateful and thankful, no matter how frustrated I get, living with this forever cancer.


Thanks for listening my invisible friends... I'm ok... I'll be ok.


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

   

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

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!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
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?”)

Infections

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.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.