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??
Wednesday, April 7, 2021
NOT!!!!!! MY LAST POST! IT CAN'T BE!
Just wrote my Dr about all the things happening to me. Don't even know if I wrote it all here previously...
4.6.21 ER Dr called last night re my labs taken by home health Nurse at home. Dr was very worried about my levels... GO TO ER she pleaded ....Again I said noooooooooooooooooooooooo, I will not go to ER, I will NOT DIE in ER.
Platelets 15 or 16, Used to be in the 100s. Hemoglobulin super low too, forget level... will look up... Other Labs not good...
Today, 4.7.21 My wonderful "regular" Charge Nurse just called me after reading my emails to my DR, Go to ER NOW she begged. Spot in my EYE not good sign. Bledding inside. Nooooooo, I will not go to ER, I said crying.. Spot probably from new chemo Blenrep. Left side eye blurry all day. Blood Alien floating there, changes colors too, if I look at colors lol, when I cover my Right side eye. Fk you side effects and myeloma trying to Kill me. I'm not ready to die... I have too much I still want to do. I cheated myself out life, when I put so much off...
I can still see outside from our kitchen window, blurry, but I can see. Too weak to go outside. Scott will get me Jim's walker tomorrow. I understand more and more of Jim's situation. I See my beautiful property Jim and I created for nearly 29 years. I can still hear, talk and cry. I can see my beautiful Ranch, Animals, and Kids helping everyday. Kids are coming soon to take care of the Animals and bring food, altho there is plenty of food here I can't eat, thank you stupid Extramedullary Mass. I plan to eat, even if stupid Extramedullary Mass objects. Fk you Myeloma and Masses. Mr Tortoise just came out of Hibernation a few days ago. Alissa got beautiful Romaine lettuce for him. Tormorrow is her Birthday. I made it! Scott's was 2 weeks ago. Ashley's was beginning of the month. Doggies Jack and Coco try to find the lettuce, and eat it. Funny, not funny. We were also going to order Sand for the horse Arena, as the old horses have sores from lying down on the hard surface in some places. Jim used to order soft Sand annually. He would exhaust himself, and get blisters raking it smooth. Later in life, Scott would tractor it for him. Jim used to. Sadly I wouldn't know now as I haven't been out there in weeks and weeks.., can't go out there anymore, risking trip and fall. The chickens are finally laying both Brown and Green Eggs. Wish I could eat the fresh eggs. They Look good, but I'm too full from the Frikn Abdominal Extramedullary Mass Alien taking up all the belly room. I have so much to live for. I am sooooooooooo Sad, so Angry, so Shocked. Was not supposed to be my life... Wanted to do so much with our animals and people and house. Wanted to just sit outside in the sun after an indoor career all my life. Wanted to bake like I never had time for. Just do "domestic things" I never had much time for previously. Wanted to organize things I never had time for. Have clothes I wanted to wear. Play tennis with girlfriends and chat superficially. Get my car washed. I just want simple, ordinary things I rarely had time for before, because I was always helping, rescuing others. No regrets on that, I just didn't balance my life well. Gave too much away, cuz I thought I had so much time ahead of me. Ha... Thought I had so much time ahead of me...
Talked to my dad last night. He's 94. He said I can't go yet. He needs me. He wants us to be around another 10 years lol. He probably will, great health, but me ???? Ha. He's a WWII Vet. Look how long so many of them have survived in a healthy way, even with smoking, drinking, etc. Into their 100's. Very Happy for them. So many wonderful people out there on this globe, living a good life. What did I do to piss off the Universe? I hate you Myeloma.
4.7.21 Charge Nurse just called. She's so sweet. Stayed late on her shift to call me. "Go to local Chemo Lab tomorrow, if you don't want to go to ER now".. "Maybe we can arrange Platelets and Blood for tomorrow?" I'm Not doing any chemo tomorrow", I cry. Just Steroids," I cry. Maybe I'll get another day. I hate you Myeloma... No I will not let you win. I will not die in a hospital, even tho the staff is wonderful, and caring. I will not die without my family and animals and friends around me... amaybe Covid rules allow for BIG parties now???
Why do I still write and update, you wonder... it's cathartic for me, and I won't let Myeloma take my last thoughts and freedom away. I will write from my death bed, or have my kids update here... we'll see... my outside view is still so beautiful, even tho I cannot easily go out there... it's not that ER that's so bad, it's my home I need finality with, and this is where I will pass, just like all our animals and Jim did... I hear our beautiful Foutain. 15, 20 years old? I had it fixed last year so Jim could enjoy it. He did.
Thank you for reading and caring as you do... Thank you for wanting to come over and visit. I look awful, feel so weak, sometimes worry I can't get off the pottie, even tho Scott's metal bars are there. Scary. I will crawl to to the bed lol.All the canes and walkers I bought Jim have come full circle now. I still have my brain and my voice and I can still be in partial "control" here, unlike hospital ER, even tho the staff is wonderful and will care for me kindly. I will order a hospice bed soon. Too hard to get in and out of our bed. I remember Jim having that problem. I will probably have them set it up like I did for Jim, in the family room, so visitors can come see me easily. Be clean, wash up, wear shoe booties lol. Or maybe, just maybe, things will turn around, and this was all just a "practice run" or joke was on me...
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.
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!
January 2010 - May 2010: My initial chemo regimen:
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 multiplemyeloma.
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.
Julieee! Dang, I miss you! I'm so sorry you are going through Myeloma hell, but am so glad you can be at home and look out and step out into that beautiful backyard of yours! It really is a ranch paradise that you and Jim created. So many great memories of Vizneyland! I remember the tortoise and how Jim would tap his stick on the ground to get the tortoise to come up and eat, Jim's vegetable garden and fruit trees, getting fresh eggs from your chickens. And all the shenanigans with so many animals! I wish for a miracle cure for you so you can jump up on a horse and ride into the sunset!ReplyDelete
I love and miss you tons, girlfriend, and send all the love and good vibes I can gather and send your way! �� Lo
Julie: The energy you draw to be able to describe how you feel in a such candid manner, is amazing and inspiring. Despite all the body fatigue, your mind is so alert. Miracles do happen. Friends who follow your writings wish, “Just another day” may turn into “months”. Wish you courage and divine intervention.ReplyDelete