Hello Everyone!
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!
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??
Friday, July 23, 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.
Hi Julie, I am soooo glad your feeling better! I am glad your levels are increasing too. You probably feel like a pin cushion.:( I am hoping you can take oral antibiotics soon. They probably want to see your levels a little higher too. Sounds like you are coming down the other side of this horrendous climb!! Miss you and thinking of you. Much love, Jan
ReplyDeleteJulie,
ReplyDeleteI am so grateful that you are feeling better and that you were able to post this morning! Hopefully, hopefully you will be home soon to enjoy the sunshine and your family. Damn those cathers and ports!
As per your request, I did a spin class for you this morning. I was thinking that it won't be long before you can be up and around and off your sore butt....and spinning, or dancing, or walking the dog if that's what you feel like.
Love to you and your family,
Jennnifer
Hi Julie,Thank you for all the effort in updating us.Feel uncomfortable doing this but
ReplyDeleteam maybe creating a diversion for you.We went to
an outdoor park presentation of Music Man last night,taking a long walk today and going to
a swimming party tomorrow and yes feel real thankful for the opportunity.You will have a story to tell soon to your students on
appreciating life-And I cannot think of a better
person to tell it than you.Get well soon!!!
Ron
Hi Julie, So glad to hear you are continuing to improve. I took Lisa down to Lakeshrine Temple in Malibu today. Gorgeous place, interesting service where they have all denominations together. Lisa and I are not the meditating type, but it was an interesting place to see. Lisa asked about you and I told her I needed to check your blog. Guess I should have checked it out Friday. So glad to hear you are improving. Keep it up, you are an inspiration to all of us.
ReplyDeleteLove, Sharon and Lisa
Sounds like after a rough time you are on the comeback trail! Great to hear. Not much new in the neighborhood. I think I told you about my ankle. I walked on my own two feet today without crutches...that was good. Roxanne starts her job tomorrow...human capital! Isn't that the term that you thought was so funny? Looking forward to seeing your smiling face back home soon. Take care. We are thinking of you.
ReplyDeleteHey Julie,
ReplyDeleteGlad things are looking a bit better for you. What a marathon you've been through. I continue to keep you in my thoughts and prayers. Our entire temple community said mishebera again for you on Friday evening.
Spencer's long distance girlfriend (Chloe from-Delaware) is here visiting. So we planned our family July/August birthday party for yesterday so everyone could meet her. Spencer and Chloe met through Ashley Turner, a close friend to Spencer and college roommate to Chloe. Spencer visited Ashley at school over spring break in Dayton, Ohio, and the rest is history.
So we had 40+ for a bbq/swim yesterday. A lovely day. Wish you had been here with us too.
The canyon misses you and we all look forward to seeing your bright lovely smile walking in the neighborhood real soon....as soon as your immune system allows.
Lots of love and hugs,
Shawn
Radar,
ReplyDeleteFantastic to hear from you again! I knew you could make it. No doubt in my mind. I can't wait to see you again next summer in Ft. Worth!
Stachia and I are leaving back for Texas tomorrow morning and we can't wait to get home! (I'll bet you can't either!) So the next time you hear from me it will be from Dallas.
Hang in there and take GOOD care of yourself Kiddo! You have a TON of people on your side rooting for you! You're beyond amazing!
Lots of love to you and my very best to Jim and Alyssa,
Russ
Hi Julie,
ReplyDeleteI'm glad you are doing better! Miss you, miss you, miss you! Love the pictures of sweet, adorable Pawsy. Stinker Ranger gave me a black eye. Everyone thinks Dan did it. I'm praying for you cowgirl. Can't wait till you're home and we can have some good laughs again.
Love Terri
Three weeks and counting, Julie!! Your home coming is near...and how we all hope & pray it is very soon, maybe even by the time you read this! We took our new trailer out this weekend and remembered how you said you & Jim have a motor home so we can all go camping together someday soon. FUN awaits!
ReplyDeletexxxoooxxx
Sally