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
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!
Cowgirl Up!!! ... Does Horse Poop Cause Cancer??
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Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Amgen
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Cytoxan
- Darzalex
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- Kyprolis
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- OncLive
- Patient Power
- Pomalyst
- Revlimid
- Support Groups
- Understanding Multiple Myeloma
- Velcade
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.
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!
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)
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!
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.
I was going to comment and sympathise in detail to some of your comments but I think what you need to hear is this -
ReplyDeleteIT DOES GET BETTER!
I went from completely crappy to remarkably less crappy in a few days, not fantastic, because I know you wouldn't believe that anyway, but feeling something like normal again.
Hi Julie, I just want you to know that this is my 3rd try at posting. Perhaps my earlier ones were too lengthy? Perhaps there are many of us that haven't figured our the system yet, but are holding you in our thoughts and prayers around the clock and so thankful for the ability to follow your progress, for your good humor and wit, and the strength of your battle against the bad cells. Now it just sounds as if you are doing everything you can to support the "stemmies" as they re-populate your body and learn how to take care of you.
ReplyDeleteWe love you and are with you.
Betty
P.S. Huge CUDOS to (COC's own)Nurse Jan and all of the other wonderful medical professionals at your side.
Julie, Thanks for rallying enough to complete your recent posts. It is good to know you've dug in and found the strenth somewhere to do so. As with all the individuals whose love and support enrobes you--know I too am sending you thoughts of positive energy....Michele Jenkins
ReplyDeleteHi Julie,
ReplyDeleteYou are just amazing and glad you are starting to get your strenth back (at least enough to post your blog). You are so in my thoughts and prayers and I truly wish for you more strenght and to just feel great very soon.
Much love, Sharon Cronk
Hi Jules! From seeing the gap between posts then reading your recent post it sounds like you've had one hell of a fight on your hands battling your disease. I admire you more than ever for your strength and perseverance and can't wait for the day when we can plan another trip and get back to eating, exploring and traveling. We think of you daily and send tons of love and healing thoughts from all of us! We have sooooo much to catch up on ;) Love you!
ReplyDelete"If I could reach up and hold a star for every time you've made me smile, the entire evening sky would be in the palm of my hand."
ReplyDeleteThere isn't a weekend were I am not thinking of you (granted, I hike to cure blood cancer every Saturday).
Love you lots!
Jesse
Hang strong Julie! It's gotta be tough going thru the hell that you are going thru, but you are so much tougher and stronger!
ReplyDeleteI love you so much! Keep up the great work in dealing with all that you do! You're such a trooper!
Julie,
ReplyDeleteSending good thoughts and prayers your way. I am so sorry to hear that you have had a tough go of your treatment. Hope that you have brighter days ahead & kick some MM booty!
~Adrienne White
XOXO
Julie hang in there!! These dark days will get better. I spent two weeks in the hospital and my memories of that time have many blanks thank goodness. The self managed pain med button was my best friend. You are young and strong and you can do this!! Sending good thoughts and prayers your way,
ReplyDeleteJulie, please continue to do whatever you manage to do to summon the strength to continue. I send you all the hugs I have, and all the support I can contain in this one note. I hope this terrible time passes and your strength begins to return. You are an amazing, beautiful person, inside and out. I love you.
ReplyDeleteJulie - you are a ferocious warrior, a kind spirit, a wordsmith and the comeback kid!!! Much love to you as you fight the "C" battle...hope you get back to the canyon very soon! Sharon Amrhein
ReplyDeleteOh dear...you didn't need another problem, those darn IV's! I had to have my Hickman removed too (2nd transplant hospitalization) but they put a mainline in my groin, now wasn't that fun! But it worked to make me well, and so will all these nasties you're going thru. You'll look back and all the wonderful, hesling people will be foremost in your memories. And it's obvious you are improving...fewer meds...blog reports 2 days in a row! We'll be reading one soon that you're on your way home. Keep up the good fight, it is worth it!
ReplyDeletexxxoooxxx
Sally
Julie,I guess I am like several of your other
ReplyDeletefriends-haven`t figured out the system yet,but knew
you must have been going through alot to have
skipped writing a few days.Neat how you always
have something nice to say about the other people
there.Keep focusing on the nice times you will have riding with your family at home with your
horses and in your boat at Havasu.
You always have had a zest for life but I am
sure it will be greater now.
We all miss you
Hi Julie sooooooooooooooooooo glad to hear from you!!! As you can tell everyone has been anxious to hear from you.
ReplyDeleteI can"t imagine everything you are going through but just ride the wave it will get better I promise...
Love you mucho,
Claudia and the gang..
Julie,
ReplyDeleteYes, it was good to hear from you -- we were all worried. Hang in there and this will all be over soon. You are the strongest woman I know, and if anyone can overcome this, YOU can!! You are in my daily prayers. Love you always,
Leslie
Julie, Thank you for posting....I have been thinking of you sooo much. I am sorry that you have gone through all that. Sounds like you are coming back though. Keep up this fight! We are here for you guys for whatever you need. When you get home, if you need anything!! Love you, Jan
ReplyDeleteJulie, It is so good to see your new posting....
ReplyDeleteHopefully, you have made it through the worst part. On to recovery............. You are so strong and brave!!! Hang on Dear One.... It will get better. We are keeping you and the rest of the family in our thoughts and prayers.
You are Loved,
Evelyn and Neel
Julie,
ReplyDeleteYou know I'm not a techie, but seeing that several other of your buds had a rough time getting through the system, I feel in good company! I have been thinking of you daily and, on Monday, thanks to Christy's e-mailing the blog info, I got to read everything thru July 9. There's no denying that you have been to hell. But in reading your most recent updates we can see that you are over the hump and on your way back!!!
Your courage is amazing and that you were able to maintain your humor through all of this is astounding. You are my hero(ine).
Love,
Peggy
PS The bob looks great!
Radar,
ReplyDeleteYou'll NEVER be off my radar screen! You're beyond amazing...! I read your blog every day and think of you so often. That "thread" you're hanging on by is solid stainless steel! I know it's been rough, but you're inspiring soooo many people with your stories of what you've been through and with your positive attitude. I feel so lucky to even know you!
Remember the NSA conference is in Ft. Worth next summer. I expect you there!
Give my best to Jim and Alyssa.
Love you!
Russ
Hi Julie:
ReplyDeleteJust checking in on you to see how your are doing. You never cease to amaze me...blogging through all this. Keep your spirits up and know that we are all think about you and can't wait for your to be back here. Stay strong...we are all here for you.
Jamie