Thanks for checking in and following my ongoing Myeloma cancer blog, which I began June 2010, to document my "summer vacation" at City of Hope Hospital for my Autologous Stem Cell Transplant. I hope you enjoy my candid musings and treatment status updates. Please comment so I know you've stopped by! Look for my 2021 status updates on the 1's, but I'll surprise you and post in-between :)) Thanks for reading, caring and commenting!
Thursday, December 30, 2010
I'm ALIVE!! One Year Ago Today I was Diagnosed with Multiple Myeloma Cancer...
Exactly Right Now... Dec 30, 2009 ... we were hearing the term Cancer... Multiple Myeloma Cancer... and that my blood plasma was 70% consumed with Cancerous Myeloma cells
Exactly Right Now... Dec 30, 2009... we were hearing that I was in Stage 2 of 3 stages of Cancer...
Cancer, Cancer, Cancer, Cancer, Cancer... is about all I heard...
At This Time ... Dec 30, 2009... my life as I knew it... had changed forever
At This Time ... Dec 30, 2009... I had an instantanous shift in thinking... from that of a very healthy, I'm living forever mentality... to... OMG I am mortal and I am really sick and I HAVE FRIKN CANCER!!
EXACTLY RIGHT NOW, DECEMBER 30, 2010...
I'M GOING OUTSIDE TO PET MY HORSIES AND CELEBRATE MY REMISSION, MY RECOVERY, MY AMAZING LIFE...
MORE reminiscent details later :)
Tuesday, December 14, 2010
One Year Ago Today
One Year Ago Today... I was shocked when checking in and saw Oncology attached to Hematology...
One Year Ago Today... I was presumptuous about my 'good' health and saying to myself... "huh"... I don't belong in this Dept; I couldn't have cancer... I'm just really anemic! Cancer doesn't run in my family, so I'm really only here to have my blood tests analyzed. I'm just really fatigued and tired from the semester; I'm not sick...
One Year Ago Today... I was my goofy and silly self at this appt and they must have thought... O boy... this gal sure is clueless!!!
One Year Ago... a Week later... I was receiving serious phone calls from my Doctor
One Year Ago... a Week later... I was going for more blood tests which turned out even worse than the ones before and was told I may have to be hospitalized and receive emergency blood transfusions
One Year Ago... a Week later... I was surprised and shocked by an "unscheduled" Bone Marrow Biopsy
One Year Ago... a Week later... I was beginning to realize something serious might be going on with me
One Year Ago... a Week later... it was nearing the Holidays and I went about celebrating AS IF EVERYTHING WAS OK
One Year Ago... a Week later... I was awaiting the results of my first Bone Marrow Biopsy and beginning to process the seriousness of my situation... but still in optomistic denial
One Year Ago... a Week later... I still was still convincing myself everything would be ok... had to be ok... and NOTHING REALLY could be wrong with ME... THEY must be making a mistake...
Sunday, December 5, 2010
5 Months Post SCT
5 months ago today... I received my own Stem Cells back to reinvigorate and restore my Chemo ravaged system from my War on Myeloma
5 months ago today... I had no idea what July 2010 would bring... good thing!
5 months ago today... I had already survived The December Diagnosis, multiple Chemo Treatments, multiple life-saving Medications, never-ending Blood tests and body Surveillances
5 months ago today... I had thinning/shedding hair and had already had my signature Blonde ponytail chopped off
5 months ago today... I was on the 6th floor of City of Hope Hospital looking out my window wondering what in the world happened to me and wondering what was in store for me
5 months ago today... I was learning how to be a patient Patient... learning how to let others take care of me
5 months ago today... I was wondering how powerful Chemicals would be tolerated by my body
5 months ago today... I thought about life and death
5 months ago today... I thought about MY Life and Death
5 months ago today... I wondered about potential outcomes... and focused my energy on The Positives
5 months ago today... I was amazed with bio-medical sciences and cancer treatments
5 months ago today... I was overwhelmed with what had become of Julie
5 months ago today... I was realizing Cancerous-Julie would never be Free-Julie again
5 months ago today... I was beginning to understand that I had been diagnosed with CANCER
5 months ago today... I was beginning to realize just how much my life as I knew it had changed and would be changed FOREVER
5 months ago today... I learned the value and need for Television noise on 24/7
5 months ago today... I was processing the loss my daily freedoms- realizing I'm an IN-Patient
5 months ago today... I was attached to an IV stand 24/7 that held life-saving chemicals and fluids
5 months ago today... I was receiving treatments to Save My Life and it was SUCCESSFUL!
5 months ago today... I was and am so grateful for my Doctors, Nurses and entire Medical Staff at Kaiser and COH
5 months ago today... I was and am so thankful for all of YOU and your unwavering contact and support
5 months ago today... I DID NOT KNOW I WOULD BE IN REMISSION TODAY and I WOULD GET A NEW LEASE ON LIFE!!
Today, December 5, 2010 I am counting my blessings, I am very grateful, I am very appreciative, I am very awed and I am very happy :)
All this... in under a year's time...
Monday, November 22, 2010
Happy Birthday to Me
Amazing what I have been through this past year...
This day last year 2009... completely unknown to me, MYELOMA was brewing inside me...
Specifically my plasma cells were 67% cancerous and I was soon to be (only a month and a few days after my 2009 birthday), diagnosed in stage 2 of 3 with Multiple Myeloma Cancer...
But the Birthday present to me this year is Remission and being on the Recovery Road to Good Health!
Who knew in just 11 months I would go from a shocking cancer diagnosis, to aggressive chemotherapy, to hospitalization for a stem cell transplant, to my current recovery process! And all this in under a year's time!
I used to brag that all the DRAMA swirled around me, but I wasn't ever the center of it!
Well, hahahahhaaaaa on me... I've been the recipient of all the Drama this past year!
So Happy Birthday to me :)
I am blessed more than ever this year, Nov 22, 2010, for :
ALL of YOU
MY SPECTACULAR MEDICAL TEAM AT KAISER AND CITY OF HOPE
My body's ability to tolerate all the cancer fighting treatments I received
Good health to come
And the Good Life I am still "allowed" to live!!!
Thank You all for being there for me! xoxoxoxo
Monday, November 15, 2010
My New Hair is So Funny!
Friday, November 5, 2010
4 Months Post SCT- wow!
Not much new to report.... just marking the day... November 5th... 4 months since Melphalan chemo EXTERMINATED the last of Myeloma and 4 months to the day, July 5th, that I was infused with my cleansed Stemmies to regenerate a new immune system, repair damage and send me into Remission la la land :)
When I reflect about this journey I have participated in for the last 11 months... it still seems so unreal, so out of body experience-like for me. I marched in step each month to what was prescribed for me and appreciated the 5 Star care I received every step of the way ... but I still feel so disconnected to the diagnosis and label of CANCER!!! Even when I look in the mirror at my new Cancer-Make-Over-Buzz-Cut... I still look back at the person looking back at me and wonder WHO IS THAT, AND WHAT HAPPENED TO HER!!!!
But I am slowly feeling better each day... if only I'd stop buzzing and numbing at night and get some sleep!!!
Yes, Fortunately today I was able to re-affirm (to myself) my road to good health... albeit temporary... by spending the morning and early afternoon with my amazing Farrier Ryan. Today was Hoof Pedicure Day (aka hoof trims). Yes, any horsey event has always been very special to me... but now... priceless! My horses constantly reward me with their nickers, nuzzles and neighs and the simplest events such as brushing their manes and tails, scratching and brushing their slick coats gives me endless moments of FEELING SO ALIVE AND SO APPRECIATIVE to be me and STILL ABLE to be a Challenged Cowgirl!!!!
I'll post a pic soon!!
Love to all of you xoxoxoxo
Sunday, October 17, 2010
Remission Stats and Status
Fortunately and Unfortunately, I'm pretty much at a "status quo" :
Fortunately, very fortunately, I am in REMISSION and my Stats are good (below)
Unfortunately, I am still Neuropathically Electrofied most all the time!!
I've been trying to find an appropriate analogy to describe my crazy Neuropathy symptoms...
So here's what i've come up with for you:
At night while trying to sleep my HANDS and forearms "fall asleep"- ironically them being "asleep" AWAKENS me... my Hands and Fingers feel like heavy potatoes with tingling sprouted roots attached!
My FEET when I try to get up to move around are like flat wooden boards
Last month I would do laps around my house to get my circulation going
But seriously, who the helloooo wants to exercise at 2, 3, 4, 5 in the morning!!!!
So I stopped that
So now I just get up and shake my limbs VIGOROUSLY until I'm pissed off enough about my continuous interrupted sleep... and just drop back into bed, willing myself back to sleep... until I am sabotaged again
Typing this out made me realize the ridiculous ironies here:
My limbs fall "ASLEEP", preventing me from SLEEPING!
The BLOOD needing to be circulated to stimulate the nerves to lessen the tingling/burning sensations so I can sleep... is WHAT began this WHOLE drama ...
BAD BLOOD CIRCULATING WITH MYELOMA CELLS!!!!!!!!!!!!!!!!
aaarrrggghhhh!! this is so crazy for once healthy-as-a-horse-Julie...
Here's a totally October apropos visual analogy for you of how I feel:
Friday, October 1, 2010
Bye Bye Blondie.... Helloooo baby brownies and greys (with long promised pictures!)
I'm still BUZZing and numb from the Neuropathy! uugghhh!! But that's to be expected with all the "high-dose" chemo I've survived to dominate myeloma! Appt with a Neurologist this coming Wed.
And speaking of BUZZING, after finally accepting my blondies were history, I joined the shaved-buzzed crew on Friday Oct 1, 2010!
Finally let my son Scott buzz the last of my wispy blondies off, except for a few sparse bangs I had him preserve... just because!! Daughter Alissa had been after me for some time to shave, but I wanted to wait and see what "nature" had in store for me... and actually it was really interesting to see the new hair come in, as my original hairs gradually shedded out on their own. You know, I never did experience a full "bald" stage.
~ Gone is the remainder of the reminder of what my previous hair once was
~ Gone is the last of my hair that saw me through my initial treatments, endured my hospitalization with me, and then slowly fell out during my home recovery process
~ Gone is the last of my blonde hairs that so many previously complimented me on
~ Gone is the last of the hairs that were present prior to diagnosis
~ Gone is the last of (what was) my life-long blonde security blanket
~ Gone is the last of my "Blow, Glue and Go" style
~ Gone in June, my Palomino mane and tail
~ GONE is what I was attached to, but now actually FREED from !!
Hello to the new NO Maintenance, Wash and Stare at Hair, and full Freedom hair!
So... I tested out the new "Do" with a walk down the road after my buzz
And I think I caught a few drivers doing a "double-take", but not of the type I previously experienced...
I think the looks were of the: "Oh That Poor Lady" type of glance, but I didn't care! I felt a new freedom and I see my buzz and new hair to come, as symbolizing the success of all my treatments and Remission!!
I'm ok, REALLY I am! it's all been such an surreal adventure to me
For sure now, no day is the same
No event is the same
I get to experience a "new, re-invented me" almost daily!
HERE ARE PICTURES I've previously promised!!!! :) Thank you Tom and Lori for taking these great pictures (me in black T) and Thanks to Alissa and Scott for the others :)
Wow! Look, my hair grew in FAST!
(Just Kidding! it's a really awesome wig!)
Thanks to Godiva's Wigs
We were at one of my first social outings and the beads were part of the event
Yes indeed, Chemo and Steroids contributed to the decline of my eyesight
But that's ok, glasses are my new jewerly
Ha! who was I kidding!
But you can see the new hair underneath my last whispies
Moments before my first buzz haircut 10.1.2010
Would you know it's ME if you came up behind me???
Can't you tell I work out with Scott ALL the time! Just look at my steroid flabby arms!
But I had to add it to the hair evolution pictorial
Even Vancomycin couldn't bald me
with a lot of hair still (and a lot of steroid blub!) 7.3.2010
Little did I know what I was in for....
Me all bloated up from Steroids, May 2010
What a wonderful pre-stem cell transplant event with my amazing family :)
Just call me Mz BUZZ now! Buzzed hair and Buzzing extremities!
Sunday, September 19, 2010
And I ache like I have a fever 24/7
I hesitate holding a glass now as I involuntarily DROP things
I do laps around my house a night in a losing attempt to rid my extremities of the electifying buzzing, pain, numbness and pins and needles
Anyone up for walks between 2-5 AM??? LOL
And I was presumptuous enough to think I escaped chemo-side-effects! Gaahhh! go me!
And, adding insult to injury - - I really have lost most of my original hair and now just have some lifeless whispy strands left... but after head inspection, my family reports that my "new" hair is coming in...
I had Alissa take pictures of my riduculous head and "hairdo"... and I am considering posting these pictures... quite the entertainment for you I would think.... hahahahahahahahaaaa
But on the upside of this........ my style is a definite "wash and wear" ! Be jealous girls ----- no maintenance, no blow drying, no styling necessary !!!! And - - no more Julie's trademark "Glue and Go" mini-bee-hive -poofy -clipy -do!
Be sure to check back soon, as I may just post a few pics of my crazy new cancer "do" ...
If I can get some pain and buzzing relief to be computer functional!!! aarrrrrrggggggghhhhhhhhhh :(
Thursday, September 9, 2010
P and P = Pain !!!
Well I spoke too soon (on my previous post) ... eekkkk I have been attacked by the lingering affects of Chemo and the millions of medications that I was, and am on ....
I now have (what i am calling) the P P effect....
More to come when I actually have use of my extremities and it doesn't feel like I have myself plugged into an electrical socket!!!
Sunday, September 5, 2010
THANK YOU! THANK YOU! THANK YOU! THANK YOU!
TO ALL OF YOU... FOR YOUR AMAZING, SWEET SUPPORTIVE, HELPFUL, ENCOURAGING, FUNNY, AND LOVING SUPPORT DURING MY MYELOMA ORDEAL!!!
(Sadly it's not over-over, and never will be, but I made it to the top of this myeloma mountain milestone for hopefully some time!)
As I am now feeling better each day, my goal is to write you back personally :) I think I have almost all your email addresses or FB. Your unwavering support and knowing your were following my blog, sure helped save my life!!!!
Look out for the "new" Julie... a bit sassier, a few re-arranged priorities and a new appreciation for food and water!!!
SEPT 5 (exactly 2 months post-stem cell transplant ! WOW!
(PS- thank you Lori for the chaperoned step back into society, protected by you and my new "do" lol !)
Monday, August 30, 2010
Myeloma? Not MY eloma anymore !!!!
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...
Saturday, August 28, 2010
And the BMB results are.......
Saturday, August 21, 2010
Blue skies, Green trees and Sunshine!
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 !!
Thursday, August 12, 2010
Challenges, Challenges... and the Joke's on ME!!!
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
Thursday, August 5, 2010
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:
Friday, July 30, 2010
H O M E !!!!!!!!!!!
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!!!
Tuesday, July 27, 2010
Vein Pain No More
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
Friday, July 23, 2010
3 weeks today!
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!
Monday, July 19, 2010
Good bye JULIE...hello julie
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
Sunday, July 11, 2010
It's a Parade of Professionals Propelling my Progress!
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."
Friday, July 9, 2010
Not the Julie you used to know...
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...
Monday, July 5, 2010
The Stemmies are Coming! The Stemmies are Coming!
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!!!
Saturday, July 3, 2010
In-Patient Patience, Tube Tripping and Melphalan Chemo
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!!! :)
Thursday, July 1, 2010
Hairballs, Haircut and Hospital Here I Come!
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!
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!!!!
Sunday, June 27, 2010
5 Days of Freedom and Counting!
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells
July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!
And you can read my whole story from that point forward in this blog!
What is multiple myeloma?
What is multiple myeloma?
Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?
Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.
The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.
When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.
When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.
Multiple myeloma is characterized by several features, including:
Low blood counts
In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.
Bone and calcium problems
Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)
Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.