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

Monday, August 30, 2010

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.

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Saturday, August 28, 2010

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.... :)
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Saturday, August 21, 2010

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!!!

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Thursday, August 12, 2010

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
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Thursday, August 5, 2010

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?)
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My Story... How my MM was diagnosed

October/November/December 2009...

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

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

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

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

January - June 2010

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

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

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

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

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