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!
Friday, July 23, 2010
3 weeks today!
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!
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
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!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
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?”)
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.
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, JanReplyDelete
I 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,
Hi Julie,Thank you for all the effort in updating us.Feel uncomfortable doing this butReplyDelete
am 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!!!
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.ReplyDelete
Love, 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.ReplyDelete
Glad 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,
Fantastic 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,
I'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.
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!ReplyDelete