Myeloma? Not MY eloma anymore !!!!

Hello Everyone  :)

I am so happy to share .............. insert dramatic drum roll here ............. that my 3rd, most recent Bone Marrow Biopsy CONCLUDES THAT WE HAVE STOMPED THOSE OBNOXIOUS MYELOMA CELLS RIGHT OUT OF MY BLOOD PLASMA/BONE MARROW!!!!! I would love to write something really medically-scientifically intelligent here, but I barely understand this crazy disease to begin with, let alone the biopsy analysis! But from what I understand, I can say that there is currently ZERO myeloma in my system!!!!!!!!!!!!!!!!!!

And yes, the sweet word of REMISSION is my current cancer status!!!!
(I received the amazing news late last week over the phone... but wanted to hear it and see (the biopsy report) in person today, before blasting the world with my stunning news !!!!!) Looooooooove all my Doctors!!!!!!!

I am so fortunate that my diagnosis (Dec 09) came so swiftly (less than 2 months of tests) and my treatment plan was quickly designed and prescribed. Even though I've had numerous complications and challenges, and at times felt I was barely hanging on... I made it, and I cannot believe that my body responded so well. Actually, I am still trying to process my diagnosis, treatment, and hospitalization, not to mention THIS GOOD NEWS!

Amazing that I've "survived" 3 types of Chemo (Revlimid, Cytoxan and Melphalan) in 7 months - and all the other medications and injections, the stem cell harvesting, the stem cell transplant, the Hickman fiasco, etc... and all the crazy side effects that happened with almost every treatment step!

Ah, so much to say; so much to process; so much to accept.... so many, many, many people to thank!!!!!
I will save all that for another blog...

So where does this bring me medically.....
1- I really am in REMISSION !!! (but not cured)
2- All my treatments were SUCCESSFUL !!!
3- I get a few weeks off from medications, then...
4- I begin "maintenance therapy" late next month or in October.. most likely Revlimid, and
5- I'm encouraging my new immune system to build me a strong army!!!!

But until then, I will revel in this "new normal" :)

Here's a picture of me today, leaving City of Hope for the "last time" for a while!!!
Photographer-hubby Jim hasn't learned to say... 1, 2, 3, smile.... so forgive me for saying this... as I might sound vain and ungrateful... but... uuggghhhh, I am not happy with my appearance...

BUT O SO GRATEFUL FOR MY CURRENT REMISSION STATUS!!! I know, I know... my hair will fill in and I can once again poof it up and do my famous "glue and go" style :)

But for now......... I'm going to go eat some fresh baked cookies Scott brought home for me and work on how the heck I am going to CELEBRATE ALL THIS!!!!!!!!!!!!

Endless Heartfelt Appreciation for everyone's love, care, concern, and interest in my myeloma journey!

Whew!!!!!!!!!!!! what a journey it's been.

And the BMB results are.......

Hi Everyone-

Rumor has it I will be posting some very interesting, toast-worthy news for you on Monday, August 30

(Anyone remember this (years ago) historical moment???)

So... I think it's almost time I switch from being the "Isopropyl Alcoholic" I currently am, to the "real deal".... 2011 is going to be SOME year!!!!!!

Continued love, thanks and deep appreciation to ALL of YOU for your unwavering support, encouragement, love and the most amazing blog comments I could ever wish for!!! Not to mention your beautiful cards, emails, texts, and calls!!!! Loooooove from my healing heart!!!!

I'll be back.... :)

Blue skies, Green trees and Sunshine!

Hello my loyal followers!

Things are/were lookn' up for me......................

Update 8-23-10 ... well they were until just after this posting, I caught my first nasal-head cold!!! ..... we'll see how I do with my challenged new immune system..... read on, for what was my good news blog last week :)

Yippee Thursday was my last home IV infusion of the wonderful Vancomycin! Look as this cool home infusion contraption! The infusion line is hooked into my (right arm) PICC line port and the antibiotic is inside a shrinking infusion balloon inside this bottle. Takes about an hour and a half to infuse... Amazing!!!!!
Funny how this picture actually makes me look like I have more hair than I do... it's quite thin at the top and back... but even funnier... it's so blonde... or is that GREY???? lol !!

And I got word that I can have my PICC line removed this coming week!!!! WOW.... can't believe I might be able to take a 'normal' shower next week, where I don't have to worry about an IV or port line!!! Woo-hoo!!! I became a pro at wrapping my arm in Saran Wrap's Press n Seal and this waterproof rubberized suction-deflating arm glove... ah... the medical inventions are amazing!

Yippee! on my way to have my PICC line removed!!

If you look closely at my hair... O No!! I think the chemo is winning... bye bye blondies :(



So all this means that things are looking up for me :)

The infection is almost gone... don't want to jinx myself tho...

I am currently only on two medications... perhaps I will begin to feel better soon, now that I'm not on the powerful Vancomycin, no more chemo, etc!  

I had my 3rd Bone Marrow Biopsy on Thursday at City of Hope by my hilarious Dr that had me positioned on my stomach, face down into the pillow, so he "didn't have to hear my screams and babbling commentary"! ahahahaaaaaa Dr. K you are so funny!!! But so good!!!! Thank you for all your great care July and Aug!

I still don't do much, but I am moving around a bit more. Still get really tired-fatigued really fast and I am so achy... maybe that's the chemo vs myeloma war still going on inside me????

Monday will be a sad milestone for me as it will be the first semester ever, I am not returning to a school or college. As my loving students have said... " Ms Julie, you went to college and never left !!! " True enough... I have never NOT been "in school"...

To ALL my wonderful COC colleagues campus-wide, I miss you so much!!!!! I know you will think I am demented... but I so miss my COC life... BOTH campuses, all of you- all depts, and the students, and the beginning of the semester craziness, and Opening Day, and our office camaraderie, and our meetings... boo-hoo....

Thank you for all your loving friendship the past almost 3 decades and throughout my cancer ordeal...

And continual love and appreciation to all of you that so loyally follow my blog and post your wonderful comments. You ARE my support network... endless thank yous!!!!!!!

And finally..... most of the DRAMA I mentioned in my previous post has been resolved, fixed or is being worked on... just keep an eye out for a Julie imposter!!!!

Love and hugs always!

PS- Alissa is not happy where I DON'T have hair!!!! LOL.......... chemo is so random.... I don't have hair on my legs or armpits... but still have eyebrows, eyelashes.... so weird... but counting my hairy blessings!!!

Challenges, Challenges... and the Joke's on ME!!!

Hello Everyone!!! Again... heartfelt thank yous for all your wonderful, funny, helpful, inspirational, supportive and loving comments. I love reading all your comments! And yes, visitors beginning next week???!!!!

I will finish the details of this posting another day.... but here's the unbelievable headlines of what's gone on with me and my lovely homelife since I've been home. Someone please tell me why I am being so challenged... I just don't get it...

Main water pipe to house bursts...
Electronics and speedometer on Jim's truck and mine become dysfunctional one day apart
House alarm system completely dies... need full system replacement
My IV PICC line clogs and clots- becomes dysfunctional... off to COH weekend ER
At the same time... I find out I HAVE BEEN IDENTITY THEFTED!!!! not kidding!!! This is a nightmare!!! Don't be surprised when I change my name... how about Martha Myeloma????
Jim's knee goes out on him... he can barely walk... but refuses most help offered...

Seriously... what's going on here... is all this meant to be a distraction so I don't think about my cancer diagnosis?????????? Maybe all this is meant to make the rest of my hair fall out???

On a happier note:
All the animals are fine
Medically, I am doing better each day... will be on antibiotics until Aug 21... yay... an end date!
PICC line is working well so far after some specialized flushing and maintenance at COH ER
Will have a delightful bone marrow biopsy next Thursday which will be very telling...
I am still not doing much other than TV and napping (when I am not consulting someone re my thefted identity...)
I must have a new disorder called Narcolepsy LOL
ssshhhhh don't tell my DRs but I am occasionally petting kitties, doggies and doing litter boxes, as well as laundry... FUN!!!!!

Really... after all my Jan-June challenges, my COH In-patient challenges and now these things... someone please tell me why I am being tested so much!!!
Or perhaps I am just a weak whinny whimp????

Lots of love and appreciation!!!!!!!!! x0x0x0x0x0

UPdate

Hello Everyone- yes things are looking UP for me... day at a time I am feeling a bit more like me ... I still sleep a lot, force myself to eat and drink... a lot LOOKS AND SOUNDS appealing... just don't have much appetite.. brb... need to hydrate... anyone want to bring me IN n OUT??? hahahaha just kidding!!!!!

Here's the Headlines:

Still on several antibiotics... home infusion is so interesting and I have great home health care nurse :)
Still have my crazy Hickman infection, but so much better... just ask Alissa... she saw it at it's WORST!
Don't do much interesting and am entertained by the simplest things... you don't want to know how much TV I now watch LOL
Can't imagine me doing my pre-diagnosis life... hmmm... who will I become in 2011???
I actually miss doing my animal "chores"... but I am accepting it will be a while before I can safely do ANYTHING...
Miss COC a lot and all my wonderful colleagues... but can't imagine doing what I used to do...
Miss hanging out with all of you and being NORMAL... hahahaha, if that is what I was before...
Miss feeling well... I think this whole ordeal was so challenging for me because I was so HEALTHY for most of my life...
If I had been sickly most of my life ... perhaps it would have just been another speed bump???
Love hearing of everyone's exciting adventures, trips, goals, plans, etc... but makes me think about my changed future... what will I be able to do????
OK, enough of this...

Perhaps visitors soon????? :) You must be 1000% healthy and not exposed to anyone... but WARNING... I'm really not that much fun and may fall asleep while you're visiting me!

THANK YOU AGAIN AND AGAIN AND AGAIN FOR YOUR WONDERFUL COMMENTS. Please know how much they mean to me, and for those of you who have been down this road, your advice is invaluable to me. I love you all and please know your comments and you staying in touch with me all throughout June, July and now August has helped save my life!

Big sanitized hugs to all of you!!!!
And on a happy note:

HAPPY ONE YEAR BIRTHDAY TO PAWS, AUG 6 !

(am I remembering correctly Terri, Dan and Doggie Clan?)

H O M E !!!!!!!!!!!

I'M HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Late Wednesday July 28, Jim and Scott packed me up and brought me home, as Alissa STERILIZED AND ANTIBACTERIALIZED the house. I was a weeping mess on the way home, not believing my hospital ordeal was finally over. I am grateful for all the wonderful care I received... but being there for the time I was and going through everything I did, minute by minute, day by day... was truly the greatest challenge I have experienced...

I am physically and mentally exhausted... but so enjoying my beautiful home, incredible views of Jim's Greenthumb talents that have created our beautiful parklike front and back yards, loving seeing my animals, horses, love being able to have windows open and breathe fresh air and I love feeling pseudo normal... even though I am far from normal or well. And I love not being attached to the giant IV on wheels. Still wake up in the middle of the night disoriented, ready to roll Mr. IV into the bathroom with me LOL

So glad I bit the bullet and agreed to the PICC line as it was my ticket to FREEDOM :) Enjoying not being a human pin cushion and several of my IV bruises are fading...
I now have a wonderful home health care nurse and this amazing portable IV infusion bottle! Looks like a little mini baby bottle with a rubberized ballon inside. Shrinks with the antibiotic infusion. Amazing! I have such repsect for all these brilliant inventors!

Just returned from City of Hope for my first re-check and I'm gonna make it :) Blood work ok and my lovely infection is shrinking slowly and not as angry. Still really gross tho... so I will have to charge for viewings!

-------------------------->  THANK YOUS TO ALL THE WONDERFUL MEDICAL PROFESSIONALS IN MY LIFE, THANK YOUS TO ALL OF YOU FOR YOUR LOVING SUPPORT, THANK YOUS TO MY FAMILY FOR taking over and helping out (Alissa and Scott have such a new reality about all the chores and animal maintenance mom and dad have done for years LOL. Just ask them how much they love their cats especially now ahahahahahahahahaaaaaaaaaaaaaa!!!!)

I appreciate your desire to visit, cook, help, etc... but we are ok... and I just need alone re-adjustment time. You really don't want to see me now... I'm not much fun and don't have much energy. Not to mention, I fear everyone's GERMS more than ever!!!!

I will love to see you in the future, but be ready to mask and glove up, shower before you come, anti-bacterialize every 5 min while you're here, or talk to me from outside... LOL
I'm a bit changed now... not as light and funny and carefree... and I certainly do not have the mental acuity I once had... blonde moments are now continual Chemo-Fog!!!!
But funny thing... I still have 1/3 my hair left and it looks like I just had it high-lighted LOL... perhaps my baby stemmies brought back my baby blonde hair from my childhood...

As always, my deep love and appreciation for your continued interest in my crazy journey, your love and support and your wonderful, life saving postings!!! I love you all!!!

Vein Pain No More

Hello my loyal wonderful friends! I can't say it enough... thank you thank you for your sweet, funny, encouraging and supportive comments! Your comments mean so much to me! i love your stories and personal updates. Helps me remember life outside of my current box... thank you !!!!!

So I swallowed my fear and accepted the fact that I must have a Picc line port installed in me as my veins just can't handle the 24/7  IV use! My 3rd vein blew and the Drs and Nurses let me know I'll be on these powerful antibiotics for weeks... just not practical to try to continue to find veins that only last a few days... and... my ticket out of here is the Picc so the IV antibiotics can be administered from home. So I had "room-service" surgery yesterday to install my new port... biting my fear of potential infection and a re do of my current situation...

Everyone here is so wonderful... I appreciate the time they take to explain things to me and reassure me. All's working well and I am actually relieved to not have the pain in my veins and arms from the IV's. Ha, you'd laugh seeing me... bruised arms, taped up wounds, etc.  Hopefully this Picc will not cause me any complications and my baby immune system will be able to fight off any invaders! WOW, I never knew how powerful a healthy immune system is... we take so much for granted... how much I've learned with this process... and if you thought I was a germ-a-phob before... I'm a crazy paranoid Mysophobic now!!!!

I'm doing better, on more meds than I can count and keep track of... but they are keeping me alive. I am eating ok and have enjoyed watching all the food channels that I never knew existed before! Don't let the secret out... they are preparing for my discharge this week :)

Thank you for all your love and support throughout this challenging ordeal...
Lots of love and appreciation x0x0x0x0

3 weeks today!

Hello Everyone!
As always, thank you so very much for your wonderfully supportive, encouraging and loving comments. They boost my spirits and give me strength!

Quick update, as i have to pamper and baby my arm IV so I don't blow another vein. I have quite the challenge here as my current recovery is completely dependent on IV antibiotics and I don't have many veins left for IV's and I will never have a Hickman or Port installed ever ever ever again!!!!

From what my foggy brain can comprehend, my Stem Cell Transplant is doing well and my Stemmies are doing good things in my bone marrow. My immune system is still very fragile and compromised by the horrible Hickman infection. I might have even been home this weekend, had it  not been for this major complicaton. Did I mention that the surgeon that removed it told me the other day that it is the worst she's ever seen! Go me!!!

I am feeling better and tired of being sedate and on my bottom so much... I can venture out of my room now with a hepa filter mask and gloves, but I am so scared of germs and having another set back... So here I sit in isolation, living moment by moment, not thinking much beyond... but thrilled I am slowly improving!

Enjoy the sunshine for me
Enjoy all your little freedoms, that we so take for granted
Enjoy your good health and strong immune system
Do something really fun this weekend for me, and let me know :)

Much love and appreciation!

Good bye JULIE...hello julie

Hello Everyone...
So I've had a "make-over"... in so many many ways... but simply put... I have been so humbled... I have a new reality......eh... will continue that at another time.... too emotional right now................

Here's what my blog titles and comments would have been had I had the energy to post this past week(s)...

The Parade of Amazing COH Professionals
Real Estate RElocation from Floor 6 to 5
Julie has NO immune system and the SCARY consequences of that!
Excruciating PAIN and fevers...
Julie is now Delirious, Infected and living in HICKMAN HELL
Emergency bedside surgery for Hickman Removal

Goodbye Hickman, hello hand-IV
World record for number of simultaneous Antibiotics
The continuing Parade of Amazing COH Professionals
O yeah... I'm actually here for cancer treatment... all the above Drama put that on my back burner!
The Curse and Consequences of having very sensitive hearing
Becoming an Umpa-Lumpa
The Amazing COH Nursing staff CARING for me and SAVING my life
New appreciation for TELEVISION
Thank you Jim for my midnight POPSICLE supply

Of BIG pills and NASTY liquids we're supposed to swallow?? NOT!!
Whoever invented "Meltaways" form meds is a GENIUS!
Huge endless THANK YOU TO THE AMAZING COH PEOPLE TAKING CARE OF ME

Of trying to type with my mainline hand-IV
How much pain can I tolerate... the bar keeps rising...
Must wean myself from IV form Antibiotics to Pill form... if I want to ever go home.......

Still smiling (when I am not weeping), still finding humor (when I am not weeping), still have hair (maybe half left now lol)
VERY MUCH APPRECIATE all of you and your comments, inquiries to my family, cards, and unwavering support and encouragement!!!!!
Sorry I cannot respond individually to you at this time, but know that you are in my thoughts and heart with gratitude galore!!!

July 20- update----
Hand IV vein blew up... need relocation  to another vein... altho... I don't have many left... 5 needle probes later... new inner arm IV installed today... I am a certified wreck
More Challenges than I had ever imagined

Good news, I am down from 5 or so Antibiotics to only 3 now... whoo hoo!
Trying to eat, drink, and practice some sort of normalcy
Trying to get ready to take meds by pill form rather than IV so I can go home sometime this year...

I am broken mentally and physically...
BUT HANGING IN THERE BY A THREAD :)

See you all in 2011

It's a Parade of Professionals Propelling my Progress!

WOW- JUST FOUND (9/2011) THIS POST AS A DRAFT THAT I NEVER POSTED!
I PROBABLY WROTE IT JUST BEFORE MY HICKMAN CATHETER BECAME REALLY INFECTED AND HAD TO BE QUICKLY REMOVED VIA BEDSIDE SURGERY IN MY ROOM...

Hello my loyal followers... I am definitely waning... I have no appetite, tired a lot, dont have much energy and over all feel pretty lathargic... but I certainly do not lack for mental or physical stimulation!
Daily, I have a delightful parade of professionals stopping by to check in on me. My wonderful team of experts such as Dr Kogut, Dr. Sehebi, Tina NP, my nurse coordinators Mirjana and Estelle, and so as to not let my body atrophy, I have an Occupational Therapist, Renee, a Physical Thereapist Juan and a Recrecation Thereapist, Edwin. And I continue to be blessed with an amazing, round the clock, do it all, staff of RN's and PCA's that take care of my every need 24/7. SINCERE AND HEARTFELT THANKS AND APPRECIATION TO ALL OF YOU FOR ALL YOUR CARE AND CONCERN! I am doing so well because of YOU!!!

SO HERE'S A RECAP OF WHAT I'VE BEEN THROUGH:

AUTOLOGOUS STEM CELL TRANSPLANT

"Autologous HSCT requires the extraction (apheresis) of haematopoietic stem cells (HSC) from the patient and storage of the harvested cells in a freezer. The patient is then treated with high-dose chemotherapy with or without radiotherapy with the intention of eradicating the patient's malignant cell population at the cost of partial or complete bone marrow ablation (destruction of patient's bone marrow function to grow new blood cells). The patient's own stored stem cells are then returned to his/her body, where they replace destroyed tissue and resume the patient's normal blood cell production. Autologous transplants have the advantage of lower risk of infection during the immune-compromised portion of the treatment since the recovery of immune function is rapid. Also, the incidence of patients experiencing rejection (graft-versus-host disease) is very rare due to the donor and recipient being the same individual. These advantages have established autologous HSCT as one of the standard

Why are BMT and PBSCT used in cancer treatment?
One reason BMT and PBSCT are used in cancer treatment is to make it possible for patients to receive very high doses of chemotherapy and/or radiation therapy. To understand more about why BMT and PBSCT are used, it is helpful to understand how chemotherapy and radiation therapy work.

Chemotherapy and radiation therapy generally affect cells that divide rapidly. They are used to treat cancer because cancer cells divide more often than most healthy cells. However, because bone marrow cells also divide frequently, high-dose treatments can severely damage or destroy the patient’s bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to carry oxygen, fight infection, and prevent bleeding. BMT and PBSCT replace stem cells destroyed by treatment. The healthy, transplanted stem cells can restore the bone marrow’s ability to produce the blood cells the patient needs."

https://www.themmrf.org/multiple-myeloma/what-is-multiple-myeloma/ 

http://www.dana-farber.org/Health-Library/What-happens-during-the-stem-cell-transplant-process-.aspx  

http://www.mayoclinic.org/tests-procedures/stem-cell-transplant/basics/risks/prc-20013565 

Not the Julie you used to know...

Hello Loyal Blog Followers...

Sorry I have been absent... but I'm sure you've put 2 + 2 together... to get that I am not my super energizer self anymore... Lots of wonderful stories for you, lots of wonderful people... as a matter of fact... an upcoming blog title will be "The Parade of Professionals"... as i have so many many wonderful people taking care of me and visiting me daily... wonderful Drs, RNs, PCA's, Physical Therapists, Occupational Therapists, Recreational Therapists... they even have me (trying to) exercise in bed and I was trying to Wii at the little on-floor gym, but I don't have the energy for that anymore...

But for now... honestly... I am very tired, fatigued, mentally and physically drained... don't know if I am starving or nauseous; longing for my ol routine... and for of all of you in my life... longing for the view from my own house and yard... longing for the the days gone by... where cancer, myeloma and medical concerns were not in my vocabulary and not the center of my universe and not my moment by moment routine ... I'm going down hill fast... the crash is coming... hopefully my stemmies will pull me through...

Jim and Alissa visiting me

The last time I made it out of my room

to walk them to the elevator...

Here's info on what I am going through, for those of you that would like to read the medical details.

Thank you as always for your loving, supportive, inspiring, uplifting and amazing comments. Love to you all!

The Stemmies are Coming! The Stemmies are Coming!

Hello Everyone :)

Mission Accomplished-------> Chemo and Stemmies have been delivered and infused!!! Here's a pictorial of my adventure here at City of Hope so far. Will write you additional details soon, as I am a bit exhausted from all the partying I've been doing here!!!

4th of July Celebration- IV-ers and Nurses gathered in the exclusive 6th floor lounge, enjoying the panoramic view of fireworks.  Patients luxuriated in an endless supply of IV cocktails while our amazing nurses provided us round the clock personalized mobile IV service! THEY ARE THE BEST! LOVE MY NURSES!!!

On our way to celebrate the 4th- Fawzia, Julie, Heather

Julie with fellow IV-ers enjoying the exclusive, membership-only Penthouse view fireworks

Julie with Nurse Heather extraordinaire, mobile IV service, holidays included with unlimited smiles

All hydrated up with my IV cocktails

JULY 5TH- STEM CELL INFUSION DAY!!!!

My millions of stem cells are specially delivered by picture-shy lab tech, partially thawed, then hooked up and infused- FAST!!!

Nurse Susan extraordinaire expertly facilitates my Stem Cell Transplant Infusion process! I lost count of the number of IV bags she hung and carefully monitored, making sure I don't have a crazy allergic reaction like I did when my Stemmies were harvested and collected!

HEARTFELT THANK YOUS TO MY AMAZING CARE TEAM today: Dr Sahebi, all my amazing nurses and nurse assistants, 6th floor staff members, food service members, sanitation team members, etc, here at CITY OF HOPE! SPECIAL THANKS TO EVERYONE THAT CAME IN ON THIS HOLIDAY WEEKEND TO BEGIN MY NEW LIFE, WITH A NEW IMMUNE SYSTEM, MINUS MYELOMA!

PS- I still have hair!!!

Thank you for reading and following my blog and for posting your super fun and supportive comments!

Loooooooooooooooooooove you all!!!! Julie x0x0x0x0x0

In-Patient Patience, Tube Tripping and Melphalan Chemo

Hello Friends and Followers!

Well I am cozily settled into my City of Hope residence dorm... I was so lucky that they allowed me chose my little piece of real estate! I am blessed with a lovely mountain view window looking east towards the mountains of ... I will have to look that up :)

Friday July 2 was a day of orientation and organization. Me and the fam went to lunch, and aptly named it the last supper :) We then lugged my luggage over to the Helford Hospital section and got me settled in and decorated a bit... and then I lost it emotionally........

I've met some lovely, sweet, talented, professional nurses and staff members that helped get me settled in and set me up with my new mobile buddy............my IV tower- who sports tons of liquid bags as hanging decorations! I am officially a Bag Lady now!!!! I am considering naming him Rex or Rx as he carries, holds and dispenses all my meds to me. For those of you who've been hooked up like this, you know the little silly and annoying challenges of  being hooked up to this metal monster friend! I have almost tripped over the chord and base legs... almost unintentionally yanking out my plastic tubes connected to my Hickman Catheter installed between my.... boobs...   as I am very challenged in the bathroom... if you're skirmish... stop reading here and go marvel at your own private home bathroom and commode! Sitting or squatting is a challenge especially for a germ-a-phob like me... trying to gather up my lounge pants so they don't drag on the floor or touch the toilet; then making sure all my tubage does not contact the commode and then I am required to "produce" into a measuring "hat" for every event I produce! eeekkk.... see this is why I have always found horse poop (in the lovely outdoors) so much more appealing than human biological events! Nicely shaped vegetarian "road apples" ; I'll happily gather those anytime!

I also dropped my brand new hospital issue toothbrush on the floor... what do you think I did with it???? Washed it well then considered using it.... then said.... HELLO NO!!! Tossed that out FAST!. On the way back to bed, Rex-Rx tripped me and landed me in bed sooner than anticipated and angled me in a way that presented new tubage untangling challenges! hahahaha everything I do now is hilarious! The small things have become big challenges, and the big things... like anticipating the 2nd dose of chemo tomorrow ... have become monolith cliff hangers !!!

So before the 11th hour today...the anticipated arrival time of Melphalan Chemo infusion... I DECIDED TO MAKE A BREAK FOR IT... Gathered up Rex-Rx and nonchalantly and casually headed out of my room (6111). I was asked to mask and glove up, and off I went to see my surroundings and options. Ssshhhheeeesssshhhh I'm a mouse in a never ending maze of halls and rooms... but surprizingly, I did find an athletic gym, a lovely sitting room with a view, and I met some lovely couples at various stages of the chemo and Stem Cell infusion process. Everyone was so positive and supportive and encouraging!!! Different diagnosis than mine, but all blood related cancers. Crazy all this cancer... But alas, SuperNurse Theresa came and found me for my first round of Mephalan:

But all in all I am doing ok on Stay Day #2, Chemo Day #1. I don't get much rest as my darling nurses are in and out several times a night checking on me and taking my vitals and vampire vials. Even tho I don't sleep much, I so appreciate their expert nursing knowledge and personal caring! Shifts change and I make new friends every 12 hours :) Everyone is so nice, friendly and helpful!

I also take RexRx for walks around the U shaped floor. They say 4 times around is a 1/2 mile. I'm feeling great and can't believe it... but I am realistic enough to know that my 2nd Melphalan bomb may explode with the holiday fireworks tomorrow, or sometime next week. I am certainly not thinking it will be this easy! But best not to jinx myself......................> o yikes... Melphalan round #2 tomorrow!!!

Love, thanks and deep appreciation for all your attention to my life and blog!!! love you all!!! :)

Hairballs, Haircut and Hospital Here I Come!

Hello My Loyal Blog Buddies!

Well......... for those of you previously awaiting me finally growing up and loping off my signature ponytail and braving a new style minus the funky clip, poofy spray & sprint long hairstyle I've been sporting for years now… Nature is telling me THE TIME HAS NOW arrived for a NEW DO …. as Julie is losing her hair like a typical cancer patient!

So bring on the new SHORT style FAST, as a primer for the full shave to come! Huge Thank YOU to my favorite, and one and only hairstylist extraordinaire Christine, for coming in to re-do my Do!!! even though she's a bit disabled herself with recent knee surgery! Thank you so very much Christine, and for tolerating my oddities and preserving my ponytail! You are the BEST!!! Heal fast and feel better!! Love you lots!!!

I think my friend CyToxic Chemo is guilty for my recent thinning and shedding and soon Melphalan-MustardGasChemo to come this weekend, will finish the job!!! I'm gonna look like my hubby Jim… but dang… he'll have MORE hair than me!!!

Ahhh the early Myeloma days… January thru May, where Revlimid chemopills and steroids actually enhanced my hair!!! So many of you were so kind these past months to say my hair looks great but… "what's up with you being a cancer patient with hair Julie"!!!??!!!

Well in the last few days, I suddenly morphed into ChemoCat and began shedding like my cats, dogs and horses! True to predictions of those that have braved this journey before me… about the second-ish week after IV Chemo… YOUR HAIR really STARTS FALLING OUT!!!!

And thank goodness for Swifters… or my bathroom tile would have become BLONDE SHAG carpeting. It was a surprising thing at first… and I doubted whether or not I was REALLY LOSING my hair… but this shedding is different from the (normal) brush-full one gets after washing and styling…
Chemo-hair just spontaneously falls out… LOL… all the time… tickling your skin, getting caught on your clothes, leaving a trail everywhere … and suddenly… the realization… fszxzxzk… I'm really losing my hair!!! Just ask Alissa about me chasing her around the house with a handful of it!!! hahahahahaaaaaaaa

But I'm ok with this… really, just another chapter in my monumental Myeloma Moments. It's new, it's different and it represents how these powerful meds are in charge and doing a good job!

And a huge THANK YOU of appreciation to my very special Nurse Coordinators at Kaiser and City of Hope for all their expert care, expert management of my case and their genuine care and concern they have shown me through out this process!

Mary Margaret from Kaiser, Crazy Cancer Patient Julie and Mirjana from City of Hope. Love you both, and thank you from my Hickman Heart!!!

Time to pack... "vacation" time has arrived... City of Hope here I come... tomorrow, Friday, July 2, 2010.

Thank you EVERYONE for all your wonderful, amazing, supportive, loving and entertaining blog comments. I really truly appreciate you following my journey and commenting on my blog ramblings! Love you all so much!!!!

5 Days of Freedom and Counting!

Hello Blog Buddies ~

Thank you so very much for all your wonderfully supportive, loving and entertaining COMMENTS!! I read and re-read every one of them and SO enjoy what you post!!! You boost my confidence and give me courage!!! Thank YOU, Thank YOU to all of you!

Speaking of courage... I think mine is diminishing quickly ... the more I read about what might be in store for me just prior to receiving my Stemmies back...

I think I'm gonna make a run for it, and fast!!!!

Alissa's trying to convince me to stay and endure!

From what I understand, those bad bad myelomas within me are going to get a final and severe Chemo kick in their asssssterisk with a lovely Mustard Gas derivative called Melphalan!!!! So let the internal fireworks of Julie begin next weekend... Happy 4th of July !!!

Ah, and what symbolism this will be... while all the "normies" and "wellies" are celebrating our country's birthday with beautiful fireworks, BBQ's and music... I will be reeling with internal explosive fireworks going off and coming out!!!

Dang!!! Just shoot me!!!

They found me!! and I've been returned ... I can't run away and hide anywhere!

Yikes... me soon...

Eehhh...... Just put me out !!

Mega Millions Win!!! Update

Breaking News!!!

My Stemmies behaved so well on Monday and Tuesday! .... Millions were collected! So great was the collection... I only had to be hooked up for harvest 2 days !!!
Interesting finding regarding my crazy allergic reaction on both collection days.... the Drs on staff were able to identify my allergic reaction. Turns out I wasn't able to tolerate the "Ethylene Oxide" that is used in the stem cell collection-machine and tubing! Ugh!!! Collection Day 2 they hung a constant Benadryl drip to counter-act my allergy! I am just such a drama-queen of opposites! Great results, but "death-defying" complications!!!

(Picture is of bone marrow stem cells I found online- loved the colors!)

Currently, I'm enjoying not being on ANY pills, chemo, IV's, medications, etc!!! wow!
Altho, you should see me trying to properly take care of my Hickman lines. I'll probably OD on Heparin, as I sometimes forget which line... nevermind... I'll panic all my medical friends following this!!! LOL... I've got the system down now! Funny stories tho...

HERE'S the Stemmies UPDATE:
5.55 million collected on Monday 6/22
3.81 million collected on Tuesday 6/23
For an amazing TOTAL of 9.36 mill stemmies waiting to invigorate and rejuvenate my dysfunctional bone marrow and blood plasma!

How they count them, and so exactly, is beyond my blonde knowledge... but that's my next research project! Thank you MD's, PhD's and RN's for all your expert care of me and my Stemmies!

So I'm feeling fairly 'normal'.... hahahaha I know... 'normal' and Julie is an oxymoron! But Havasu, Horsebackriding, and all my fun things will have to wait for later 2010/2011 ... just enjoying all the success of my Jan-June treatments and thinking about my July COH inpatient-vacation plan... did I mention... I have a date now!

And... I have a Haircut date too... short-cut recommendations welcomed... as I know so many of you didn't like my "mushroom-wedge" cut of the 1990's hahahahahahahaaaaaaaaaaa

Love and thanks to everyone for your wonderful comments!!! I just looooooove what you write!!!! Thank you from my MM-contaminated heart!!!  :)
x0x0x0

Stem Cells, Benadryl and Neopolitan Ice Cream

What a day... Collecting/Harvesting my Stemmies!

10:30- we arrive at COH, check in to the Apheresis Lab and I get to see my Hickman in action for a blood draw! Hook me up, snap in the vials... and whooosh...blood flows from my catheter tubes! Glad they function as they should for all the pain and annoyance I've been through! (Thank you Dr K at COH)

11-12:30- Lunch break-- feed those Stemmies and back to the lab to receive the blood draw results... to see if I qualify for Collection/Harvesting! We met some wonderful people there waiting also... where did all this cancer come from????

1:00- My Stemmies qualify! Yeah! The relevant numbers were something like this: minimum to qualify for collection is 10 and I was at 109... Jim remembers these numbers and is proud of my Stemmies... everyone is excited my numbers are so high... I'm ready, let the collection begin!

1:30- Set me up in a bed, plug me in, more blood vials drawn, talk with Nurses and Drs and hook me up to the amazing Collection machine

1:45ish- I begin a slight cough, body tingling, allergy type coughing, more body tingling as if I had my finger in an electrical socket... keeping my Nurses posted of my developing symptoms (Jim thinks I talk too much) ... coughing and now some asthma type-wheezing... Jim's looking at me like, shut up and quit coughing... but I know... my body is pissed off with something hanging in one of the IV bags.... Drs and Nurses are summoned... and the machine is turned off... as sure enough... I'm having a classic-Julie allergic reaction.. not good... Collection is haulted! Time to consult, discuss a plan of action...

So bring on the BENADRYL! My Best Friend... everyone is amazed how much I can tolerate and still be awake and functional... .25, .50, crank it up to .75 !

2:20ish...the wonderful Drs and Nurses on my case let me know how important it is to wrangle in this allergic reaction and continue with collection, as my numbers are so good they don't want to miss this opportunity... question is... can I now tolerate whatever is in the IV bags that my body previously said NO to?

2:30- my friend Benadryl has kicked IN and kicked OUT the allergic reaction... so I agree to let the collection begin again!

So for the the rest of the afternoon, until after 6:00pm, this amazing machine collects and separates my blood, stem cells and plasma. My collection bag reminds me of Neopolitan Ice Cream with the layers! Red (chocolate) is the blood, light red is the stemmies (strawberry), and clear-yellowish (vanilla) is the plasma!

I'm pretty wiped out at this point... but collection is going great... everyone is happy and impressed with my numbers and amount of Stemmies collected.

Homeward bound around 7:00ish. Yippee! No traffic!
Electrical socket symptoms finally stop hours later... I'm good... but so exhausted... so grateful and thankful to everyone for everything and my Stemmies success! Thank you COH staff for your wonderful care!

Round #2 coming up tomorrow... and I'm armed with boxes of Benadryl and my asthma inhalers... stay tuned :)

Stem Cell Harvest Week!

A Million Thanks to Nurse-Neupogen-Jan, Best Nurse Ever, my Neupogen-rich Stem Cells are ready for harvesting/collecting this week at COH. We could have done a hilarious location-blog of where we met for my injections! Note the background here... LOL

Thank you, thank you Jan, I am forever indebted to you. Loooooooooooooove You!!!

And as they say, a picture tells a story better than words sometimes... especially since I am often too wordy... so here's what's happening this week at COH (but via my new Hickman Catheter, not my arms)

And below describes the entire Transplant process. I'm only doing 1-3 this week, then 4-5 beginning July

Thanks to all of you for your continued support, comments, love and encouragement! x0x0x0x0 Julie :)

Surgery Fog...Belated Blog!

Hello my loyal followers and commenters...

I am just so naive!!! Surgery- ha! I thought no biggie... Hickman Catheter... just thought it was some minimal implant thingy, even though I read extensively about it... O U C H !!!!!!! Shut Up me... I so underestimate things! Had a challenging 24hrs.....O U C H !!!!! but doing better now and learning how to care for this double tube "leash on life" I have dangling from me!

And the placement is so hilarious to me... I CAN'T post a picture for you of my new chest decorations... I would be cited for indecent exposure on this blog if I did!!! So you get a post surgery picture of me that my newbie-photographer hubby Jim took. So glad it's blurry! Go Jim... :)

So they say I can lead a "normal" life with this catheter ... yeah right! Hmmm should I go horseback riding today, clean the corral with Jim or play with the doggies? Just imagine my tubes getting caught and being yanked out of my chest!

Thank YOU so much for reading and commenting and I will comment back as much as I can! Please know how much I appreciate all your comments and emails. I read everyone of them!!! love, Julie :) 

COH here we come

Hi my blog buddies :)
We're off to City of Hope early tomorrow (Thursday) morning for surgery to implant my Hickman Catheter contraption.
hahahaha on me.... I went from hardly ever taking a pill for anything, to being poked and prodded and injected and implanted with all kinds of interesting things ... make that, life saving things!! Who knew... wow... but what a ride!

So should I post a post-surgery picture??? LOL, maybe that's TMI (too much information) for everyone ???!!!!

You're all AMAZING for following my Blog and posting your wonderful comments! Looooooooooooove and thanks to you all!!

Totally recovered from Chemo!

Hello Everyone!
I keep thinking another Chemo side-effect bomb is going to hit me... as I feel too good for what I've just been through!
As a matter of fact... I feel SO good... we decided to ditch this cancer stuff and make a quick trip to Havasu before all my City of Hope events really begin! I posted this while riding up the river:

Hahaha... I'm just KIDDING! But seriously... I do feel great... must be those daily Neupogen shots? Neupogen loves me, and I love Neupogen! Amazing how it affects everyone so differently. Must be my ridiculously low WBC's that just love the Neupogen boost! 

Chemo Bites BigTime!

Hello Loyal Readers ~

Wake up call for me Thursday! IV Chemo Cytoxan (LOL- make that CyTOXIC - to me!) is some powerful stuff! I sure felt like a "real" cancer patient that night ... sparing you all the details, I was hit with what felt like the "chemo-48 hour-flu"! Leaving my 5+ hour chemo infusion, I felt light headed, bloated, dizzy, blurry, and a little queasy, but not incapacitated. So I thought I would be ok. Little did I know, the "after-life", delayed reaction of IV chemo!

We arrived home, and as always, there was household of people home. Of course everyone wanted to help me, wait on me, serve me something, etc, but at that time, I was beginning to feel "funny", so I headed for my room, and there I remained for over a day or so. Ugh! I remember getting increasingly dizzy, feeling achy and dehydrated, yet full.

At some point, the awful (to me at that time) scent of cooked food came wafting down the hallway to my room. I think my daughter was making some sort of Parmesan Pasta Alfredo (makes me nauseated just writing that...) Soon the bathroom became my best friend. First the "back barn door" events for hours and hours into the night. I was so exhausted I just remember laying on the cool bathroom floor. Then that light headed, dizzy O M G I'm going to get sick, "front barn door" events happened. I was a pretty sick filly for hours and hours and then finally, this awfulness passed and I began to regain strength, and was able to hydrate, and not fear being away from my bathroom. 

 Here's my life saving poison

Hopefully the delightful side effects mean those bratty myeloma cells are running for the hills fast and furiously! The Raid insecticide commercials come to mind as a great visual here too.

SOME TRIBUTES, HEARTFELT THANK YOU's and some sweet pictures of the AMAZING people I am so blessed to have in my life and treatment experiences:

~ Kaiser Nurse Jalee ~

So amazing. So supportive. So helpful. So professional. So caring. So fun. So saving my life!! How lucky did I get for these past 6 months!

Just loooove her!!!!

~ Robin from the front office ~ 

So sweet, kind, helpful, caring, supportive and loves animals like I do.

Just loooove her!!!! This picture was taken right after my 5 hr Chemo infusion... I was puffy, dizzy and had NO idea what I was in for later on!

~ Best Friend Extraordinaire Nurse Jan ~

Ready and willing to inject me with my Stem Cell Stimulating Neupogen shots for the next 2 weeks! She saved Jim's life and is now saving mine! Amazing friend!!!No telling what I would do to myself if I actually tried to self-inject this.

Just loooove her!

And.... how can I thank my wonderful hubby enough 

for all his support, love, driving, shopping, caring for me and our animals, etc... 

Lucky, lucky me! 

(LOL he's just glad it's me hooked up not him! hahahha)

C O H ~ all day fieldtrip

We went, we talked, we toured, we talked, we scheduled, we talked, we learned how to inject me with Neupogen, we talked, we walked, we learned how to care for my Hickman Catheter, we talked, we walked, we met so many wonderful COH staff members, we talked, we walked.... we're pooped out!

Yes, new awakenings, new realities for me...

IV Chemo Cytoxan tomorrow...

Who signed me up for this anyway???

I'm thinking any day now someone will say... "O, just kidding Julie"...

Continued love and heartfelt thank yous to all of yous :)  x0x0x0

Biopsy Bling!

Hello Blog-Buddies ~

My recent Bone Marrow Biopsy revealed great results! Go Revlimid Chemo and Dexamethasone Steroids! My pill-form "Pac-Men" infiltrated, invaded and successfully attacked the evil Myeloma cancer cells!

Numerically, I went from 60-70 % badly behaving Myeloma cells at diagnosis to 10% now! How's that for success??!!! We're all thrilled and this means we can move forward with the Stem Cell Transplant plan at City of Hope. HUGE THANK YOU TO MY AMAZING ONCOLOGIST AT KAISER Dr. Lee and Nurse Jalee! Couldn't ask for better Doctors and Nurses!!! They are THE BEST!

Big day of many consultations Wednesday at City of Hope... and then Thursday slam those remaining badly behaving Myeloma cells with IV Chemo Cytoxan and begin stem cell building Neupogen shots on Friday! Whew... let the ride begin!

Thank you so much for asking me to report in!
Thank you so much for your continued support, interest, caring, love and AWESOME Blog Comments!!!!

Love you all!!!!

Julie's June Journey

Hello Summer "Vacation" !!!! Here's my Intinerary:

Monday June 7- receive results from my recent Bone Marrow Biopsy
Wednesday June 9- all day meetings, assessments at City of Hope
Thursday June 10- begin IV Chemo, Cytoxan
Friday June 11- begin Neupogen shots for 1-2 weeks to stimulate Stem Cell Growth- Thank You Nurse Jan!! I'm a whimp and can't imagine injecting myself!!!
Thursday June 17- receive Hickman catheter
June 21-25- Stem Cell Harvest week at COH
July 1 on... COH is my new address for a while as I receive my Stem Cell Transplant and begin the recovery process and rebuild my immune system!

July, August, etc... becomes a "germ free zone" for me! Keep your cooties and germs away from my new Stem Cells!!! :)

I'm sure I'll be updating this frequently... but this is what I know my plan to be at this time.

Hey Myeloma cells... are you scared? We're coming to get you...

Hello Blog ~ City of Hope, Here I Come!

Hello Everyone- Thanks for encouraging me to keep you posted on my Myeloma adventures with Blogging. I will be posting updates when I have "interesting" news to share with you :)

Click the Blog title link for SCT details at COH.

And I cannot say it enough, or express my deep appreciation adequately... but...
THANK YOU SO MUCH TO EVERYONE (in my personal and professional and medical life) FOR YOUR LOVING SUPPORT, ENCOURAGEMENT, FRIENDSHIP, HUMOR, CARDS, FLOWERS, GIFTS, OFFERS OF ASSISTANCE, CALLS, EMAILS, OFFICE PARTIES, BEAUTIFUL PICTURES and for the ....

AMAZING Surprise!! SCARF PARTY AT THE COLLEGE...

I am so grateful to all of you... for all that you have done for me... words cannot fully express my heartfelt appreciation and gratitude to all of you!!!

Feeling so (positively) overwhelmed !!

Adorned with so many beautiful scarves

representing your love, support, caring, encouragement and friendship!

I love you all, my COC family!!!

With love and appreciation,

Julie :)