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
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.
This is craziness! Sounds like you have the Phen Curse!!! Good grief. All will be o.k. it just will. Your patience is definitely being tested. Maybe it is time that you take me up on an offer of help :) Really, anything...just down the street. Keep your chin up. I know it is hard, but you just have to keep on keepin' on. Main thing is for you to take care of your health. You had that identity thing a couple of years ago too...from the gas station. I guess you are so wonderful that people just keep wanting to be you :)
ReplyDeleteOkay, Okay.... I will tell my uncle to stop using your identity. He really wasn't a Julie anyway ; )
ReplyDeleteWooHoo... another wonderful hike tomorrow in Pacific Palisades. Will be thinking of you!
“It doesn't get better, it doesn't get worse, but it sure gets different!”
-David Lee Roth
Julie,
ReplyDeleteNo matter what your feeling right now just know that you are one of a kind. You have through all of these challenges managed to keep some sense of humor. Sharing so many moments and thoughts with all of us who care so much about you...school just began and you have been on my mind..you have assisted so many of my students transition into COC...just remember the kindness and support that you have given to so many students....The Miley twins have decided to take a year off and work...they were accepted to several universities but I think they need so time to mature....Tim and I did get away for a road trip, first time without kids...yeah we had a great time...Colorado Rockies, Rushmore and Yellowstone. Julie the skies will be bright again in your life...you are one very special lady...thinking about you....
Excuse me?? a Weak whinny whimp??!!! Julie that was me the many times that I came into your office in a heap of frusteration because life made me whimpy, and besides giving me more papers to look through =), you inspired me EVERY time to breathe, keep going, and most importantly that I was on your "A" list--meaning I could come in any time because you were by my side (Even if i only went to COC one year out of my entire college career).
ReplyDeleteI am saying this because when it rains, it pours, but I know you Julie. Regardless of how you look on the outside, you are still the Julie on the inside and that I will reconize always.
SO please breathe, keep going, and YOU ARE MY A LIST! I miss you and I need to come visit you. SO please let me know when I can....a small update...I live in stevensons Ranch now...Im officially a local so please let me know when I can come laugh with you and smile!
You are beautiful friend <3 Natalie Hand ...oh and nate says dido
You are not a whiny wimp. You are an amazing woman, dealing with life with its abundant challenges. I do confess, I have not stolen your identity, but having had ours stolen, I feel your pain and annoyance at the hoops you have to jump through because of some stinkin' criminal.
ReplyDeletePlease focus on yourself and your healing and getting stronger everyday. Nothing else matters.
You are a doll.
Dearest Julie,
ReplyDeleteI can still remember how many times I visited your office when I felt trampled on and you always gave me back my hope. From the sounds of things you are stronger than you ever expected you would be-to handle all that you have. Sometimes, we also get to learn we can't do it all alone and that in itself enriches our lives. You are so blessed with a loving and supportive family. You have been AMAZING!!!!! An inspiration to all of us. Can't wait to see you when you are ready. I have some horse stories too. God bless my friend. Love You, JJ
Hey Julie, My dad just told me you have this! I Can't believe You've had your identity stolen... That is NOT COOL :*( Perhaps it IS A DISTRACTION... cOULDN'T IT HAVE BEEN SOMETHING ELSE LIKE ONE OF THOSE, "lOOK OVER THERE! " MOMENTS!? Life will do things to ya :p Well Julie, Get some rest! I await your updates! My dad, Mom, Tony, And Kevin hope you get better every single day, And of course, So do I :)
ReplyDelete*The Macias family*
Julie, I am so happy you are still doing well with your treatments. Now the rest of "the Stuff" is beyond me. What ever is causing all of this doesn't know they are dealing with the Strongest and Most Amazing Woman Ever!!! Somehow all of "This Stuff" will get taken of... Stay focused on your recovery -- rest and do what you need to do to stay strong...
ReplyDeleteJim, We are sorry to hear about your knee. If Neel can be of help to you please call.. We love you both dearly and are here to help you anyway we can.....
Julie, I finally got your quilt to the machine quilters and it will be back on Wednesday. Hopefully it will make you smile. Not really fancy but the fabric is so appropriate.
We are keeping all of you in our thoughts and prayers. Stay Strong !!!!!!!!!!
Evelyn and Neel
Hey Julie!!....I had no idea that you were blogging about your roller coaster journey this summer!....You are truly an AMAZING woman!...there are many people that would not have been strong enough to go through what you have and are going through!...I can't believe all the crazy things that you have gone through!...You guided me through all my classes at COC and now I am in the nursing program!!...Thanks for being such an awesome counselor!...you are one of a kind Julie and I hope that all these trials and challenges life keeps throwing at you don't bring you down because you are such an awesome person! Your story is truly inspiring and something that I will use as a motivator to be the best nurse I can be!
ReplyDeleteLove you Julie! xoxo
Hi Julie!
ReplyDeleteWe are all thinking of you and your family, daily, at the CCC and eagerly awaiting when we can come visit you! On top of your health, I'm so sorry to hear about all the other difficulties that you and the family are facing. You continue to inspire me with your strength!!
We love you,
Julie J and the CCC bunch!
Julie,Glad you are doing better at least physically.Hope you can see and talk to your friends.By the comment section you have alot
ReplyDeleteof very caring great friends.So enjoy them!!!
you sure deserve it!!!
Hey Julie thanks for your kind comments on my blog. I feel your pain! I remember coming to the conclusion after the fridge broke down. Trying to get along with one vehicle and four drivers in the house, and dealing with insurance issues, that just because you have cancer doesn't mean that life and its problems doesn't go on. Somehow I naively assumed that I was exempt. Hah Hah what was I thinking. Hey I can whine with the best of them and sometimes "working the whine" out lessens the anxiety. Especially to someone who can relate to your situation. If you ever need a "Pitty Party" Count me in.
ReplyDeleteHey, Julie, I think today is your bone marrow test and I'm thinking of you all day. Sending powerful good wishes and I hope they give you good drugs!
ReplyDeleteLove,
Jennifer
Hi Julie! I have been thinking of you and sending good wishes. WE miss you so much! I hope your bone marrow test went smoothly yesterday. You are in our hearts.
ReplyDeleteLove, Dena