Hello my loyal wonderful friends! I can't say it enough... thank you thank you for your sweet, funny, encouraging and supportive comments! Your comments mean so much to me! i love your stories and personal updates. Helps me remember life outside of my current box... thank you !!!!!
So I swallowed my fear and accepted the fact that I must have a Picc line port installed in me as my veins just can't handle the 24/7 IV use! My 3rd vein blew and the Drs and Nurses let me know I'll be on these powerful antibiotics for weeks... just not practical to try to continue to find veins that only last a few days... and... my ticket out of here is the Picc so the IV antibiotics can be administered from home. So I had "room-service" surgery yesterday to install my new port... biting my fear of potential infection and a re do of my current situation...
Everyone here is so wonderful... I appreciate the time they take to explain things to me and reassure me. All's working well and I am actually relieved to not have the pain in my veins and arms from the IV's. Ha, you'd laugh seeing me... bruised arms, taped up wounds, etc. Hopefully this Picc will not cause me any complications and my baby immune system will be able to fight off any invaders! WOW, I never knew how powerful a healthy immune system is... we take so much for granted... how much I've learned with this process... and if you thought I was a germ-a-phob before... I'm a crazy paranoid Mysophobic now!!!!
I'm doing better, on more meds than I can count and keep track of... but they are keeping me alive. I am eating ok and have enjoyed watching all the food channels that I never knew existed before! Don't let the secret out... they are preparing for my discharge this week :)
Thank you for all your love and support throughout this challenging ordeal...
Lots of love and appreciation x0x0x0x0
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??
Tuesday, July 27, 2010
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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.
Julie, you are one strong woman! From enduring all the physical pain and indignities, to your wonderful sense of humor and optimism...you are a blessing to all you know you. Keep the faith, finish strong, so many are rooting for you!
ReplyDeleteLove,
Chris Norton
Julie,
ReplyDeleteI wish I had a magic wand to make you feel better and do away with all your pain. What an ordeal you have been through!
Let's hope the worst is over and you will be home and moving on to the next phase of your treatment and a full recovery very soon.
We miss you terribly but we are glad that we can follow your story through this blog.
We'll make sure to have a generous supply of disinfectants and antibacterial wipes in the office to keep all the germs away from you when you return. The office isn't the same without you.
Love,
Edel
I am trying this again! This is a test Pokie
ReplyDeleteI am so proud of you! not that you have much of a choice, but your positive attitude has got a lot to do with your recovery. Hopefully the worst is over and the new port will do it's job!
ReplyDeleteI wish you no more pain or complications. ALL GOOD THOUGHTS!
Hope to see you at home soon!
xoxo judy
Julie I am so proud of you!! You are amazing and so strong!! Me and Ryan constantly think about you along with a bunch more people I know! So I read the secret at the bottom of ur post! Yay! Now I wanna visit you but everyone tells me your too tired and I totally understand but if you want visitors don't hesitate to tell me! Ill be there in a heartbeat! Keep going strong mama!!!! Xoxoxo!
ReplyDeleteLove you Jewels! Hope you got to see the pics i sent. :) xoxoxo Linda
ReplyDeleteHey if you think you're germ phobic now wait until you get out. I've always been a bit dubious about touching toilet door handles (that's wash room to you I believe) on the way out. The first time I used a public toilet after my release I risked flashing undergarments as I used the hem of my dress to hold the handle as no paper towels were available! :D
ReplyDeleteWay to go Julie!! Can't wait til you can go home!!! Hugs to you! Miss you.
ReplyDeleteLeslie
You are almost there Julie! Keep going. You are so amazing and super strong. You're such a huge part of my life, I need you to get better and fast. No more of these infections, ok?! I can't stand being away from you for this long! I want you home and ok and happy and positive and etc. :)
ReplyDeletePS - You ARE strong!
love you!
The first thing in the morning when I get into the office is to see if you were doing any excersises to the fingers by posting to the blog. Well glad to see you working out yesterday. The stem cells are just like the field of dreams.. if you inject them they will grow. Home run for the stemmies.
ReplyDeleteLove your cancer partner Janet
Julie, We are so thankful you are feeling better. The port will surely help with the vein problem. Just another bump in the path to recovery........... You are so stong and truly "Our Hero". Your positive attitude shines through and the way you are touching all of us with that stength is amazing. You are Loved Beyond Measure Dear One......
ReplyDeleteWe are keeping you and the rest of the family in our thoughts and prayers... God is hearing all of those prayers that are surrounding you.
Evelyn and Neel
P.S. We saw Rachael yesterday at California Fresh and she looks "Wonderful"... A Blessing Indeed.
Hey Julie,
ReplyDeleteJust to keep you posted and informed in something other than the food chann, needles, veins, germs, etc.,.......I thought you would be interested in a couple of former students who you were magnificant with!
Michael received a paid internship and road to his masters at Stephen F. Austin State University in Nacogdoches Texas.(It is very eastern Texas almost to the LA border). He is the GA for physical training. His masters will be in Interdiciplinary Studies. (3 majors are incoorperated, he choose Kinis, ? and counseling!)
Matthew is in North Carolina playing on the egolf Tour. He has a sponsor and making some money!
Anyway, enough said.
Love you, thinking about you. Can't wait to see you at home!