Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Wednesday, July 6, 2016

6 years Still Winning and Here we Go Higher Dose Kyprolis

July 5, 2010 = Stem Cell Transplant Infusion success
July 5, 2016 = Still here Myeloma! Who's Winning?

July 5, 2016 - Began higher dose Kyprolis 
July 6, 2016 - 2nd infusion of higher dose Kyprolis.

 7.6.16

6 years ago today I was surprised to be feeling rather ok after my completely non-dramatic, anti-climatic Stem Cell Transplant Infusion. Seems like more of a Big Deal is made of the Stem Cell Infusion itself, then the intense cancer killing chemo infusions preceding the stem cell transplant-infusion.  I know now (and sure learned then), that it's really the 2 days of high dose Melphalan chemo that becomes the monster. Melphalan completely depletes the patient's immune system, systemically killing off the good and the bad cells. So many suffer so terribly from the intense chemo, which is dosed to render myeloma dead and dysfunctional. Our stem cells are infused back to regenerate our system, re-boot us to remission, hopefully eliminating, suppressing the cancerous myeloma cells for a long time. (This is a very simplistic explanation, for the real, medical scientific details, just Google in Autologous Stem Cell Transplant, and you'll get all the detailed details of the procedure!) 

 7.5.2010 
Stem Cell Delivery!

Jim and Alissa there to share in the Big Moment!

I remember feeling relatively ok for a few days after the high dose chemo and SCT infusion, wondering what the Big Deal was about this procedure. Nurses and Doctors continually "warned" us patients that the "crash" (Nadir) is coming.. be warned, be ready. Follow all the recommendations for sanitized health. Wash, cleanse inside and out, swish the oral antibiotics, hydrate, move around, don't get bed ridden, do whatever you can to stay strong. Watch out for the evil mouth sores (mucositis). Eat well, but cautiously. I remember having stereo vomiting in surround sound, from the adjoining rooms on both sides of me. We all had private rooms, but the walls weren't perfectly insulated. I remember keeping the TV on 24/7 to drown out the suffering of my invisible neighbors. I felt so bad for their suffering. I vowed to not wind up like that. I barely ate, paying attention to my body's signals. I ate simply and minimally. I remember the cafe staff calling if we didn't order each meal. I learned to order something, just to order, just have it, just be left alone, but always appreciating their caring protocol. Plain baked potatoes. Clear juices thinned with water. Cream of Wheat. Plain oatmeal. Canned fruit. Nothing fresh allowed. Too much bacterial risk. Our diets were called the "anti microbial diet", or the "immunocompromised antibacterial diet", or the "Neutropenic Diet" (Google those too!). The whole point is to avoid infection at all costs, as when Melphalan thoroughly kicks your systems butt, you have ZERO immune system protection. No internal Army, Navy, Marines, Seals or Swat team to protect you. I remember feeling ok at first... then each day a little worse, then continually worse... feeling blah, achy, fatigued, sickly, depleted...

The last time I left my room for 3 weeks
 to walk my family to the elevator

Your body plummets to outrageously low blood counts. You begin to feel so awful, so sick, so yucky. It's indescribable if you've never been that sick, that weak, that incredible weakness and fatigue like non other. My goal daily was to get out of bed, grab my IV stand and (barely) make it to the bathroom, or just make it out of bed to the chair by the window. This was the beginning of my lovely lower GI issues. And I went down hill from there. And down hill I went and went. My Hickman Catheter became septicly infected. My chest insertion site was terribly infected. I had a constant crazy fever. I was really really sick. My medical team realized this. They wasted no time calling a surgeon to my room, and I had emergency bedside surgery to remove my horribly infected Hickman Catheter. I was told this was the worst Hickman Catheter infection they had ever seen. I was really really sick. I felt awful. I had no immune system to fight. My IV stand grew to bags and bags of IV antibiotics. 5 or 6 different antibiotics to keep me alive. Liquid IV nutrition and hydration at this time too. My surgery wound was awful, disgusting, seeping, oozzing infected poison. It felt gross and looked gross. This was between the 2nd and 3rd weeks. Medications now administered via hand and arm IVs. The medications blew up my poor veins. I had to have new IVs inserted daily. (That was was a big deal to me then, now, eh, whatever! used to it!) I refused a Port or Picc line as I was terrified to get another mainline infection. Oh how I suffered. I didn't want anyone to come see me. I told my family not to bother coming to see me. They came anyway. I tried to visit and talk, but eventually told them if they come, just sit, tell me stories, watch TV with me, nap with me. I watched more TV during July 2010 then I had ever watched in my entire life. My TV eventually burned out. The tech team came immediately to fix it. They knew this was our lifeline. They knew we needed the distraction and company. They knew we needed the nonsense noise to save our sanity. 

Slowly my numbers rebounded. Slowly I began to feel a bit better. I began to chat more with the staff. I was so exhausted, so depleted. Funny though, word got around the floor I was a professional counselor, and staff members would come in to chat about their families, issues, college majors and registration. I don't think they realized how awful I felt, as I still had hair, and tried to always put a little make-up on. I always tried to hard to be me. The me before cancer. The me before the "new normal me". I called that time period the "Parade of Professionals", as so many types of caregivers came to see patients. Medical Social Workers. Occupational Therapists. Recreational Therapists. Doctors, Nurses rotating, assessing, recommending, so caring, so concerned. Wonderful, dedicated staff. Shift changes. New faces, tell my story over and over again. So challenged mentally and physically. I was so exhausted. So beat up. Blood tests constantly. Measure what goes in, what comes out. I focused on "Less is More". Less of everything. Keep the eye on the goal Julie. Get well, get home. Build your immune system back up. Get strong, beat this. Eating, drinking was a huge effort. Horrible horrible acid reflux like I'd never ever experienced. Never ever. Eye on the goal. Live in the moment, don't think of the future... too painful right then... How I tried to be so strong, but I was so depleted. I felt I would never get well or never get home.

They let me know the only way I would ever be released would be if I could swallow my meds, and get off the IV meds. Have you ever seen hospital issue Potassium pills. OMG, huge! So I asked for a liquid syringe. OMG that was even more awful. The taste gagged me. I said I would try to eat a banana a day. I said I would try to do a lot of things. I did try. Sometimes successfully, sometimes not. My whole day was trying to get nutrition in, have it stay in me, and make it successfully to my little bathroom just mini steps away. I remember I had Jim bring me juice Popsicles. I would be so parched in the middle of the night. I'd push the buzzer and ask for a Popsicle. That appealed to me and stayed with me. That little event, a huge task. The staff was so wonderful. Always offering help. Me, always too independent. I tried too hard to do too much on my own. 

 Wonderful amazing staff members! 

Keep the TV on. Focus on the goal of getting well and getting home. Home seemed like a fantasy, as distant dream. A non reality. I became very emotional about everything. I didn't want to think about home, my family, my animals, my college life, my life beyond the hospital. Broke my heart, as I felt so broken. Felt like I would never ever recover. When the medical staff talked about my potential release, I begged them to not talk about it, if it wasn't going to happen soon. They told me again, the only way I could be released was to accept a Port or Picc line. Wonderful professionals came in to see me. To describe the procedure. They brought in the BEST technician, nurse, doctor who had been doing this for over 25 years and was going to retire any day. She said I could be her last Picc patient. I finally agreed. I was so scared. Scared of another septic infection. I accepted my situation. I agreed to the Picc line. The procedure was no big deal! Fear can be crippling. I was released a few days later! I don't think I have many pictures from this time period. They may be on my little old Razor phone. I think I deleted so much, as I didn't want the memories. It was a very very painful, challenging time in my life. Being isolated for a month in a hospital. You don't own your life. You are not in control of much of anything. You stare death in face 24/7. You wonder if you'll make it. You feel so awful, then suddenly, so ok. One of my Doctors later told me, he always remembered me, as I was the only patient that never unpacked. Yes, I left my clothes in my "carry on bag", on a chair, and I never unpacked. I never thought I'd be an isolated super sick inpatient for a whole month. I made it myeloma, and here I am recounting my 6 year stem cell transplant anniversary! 

July 5, 2010 - July 5, 2016 


***********

So we'll see how this new regimen of higher dose Kyprolis goes. Of course I was scared and hesitant to increase. Still am. But I did, yesterday and today. Always trying to preserve my organs. Organ failure is too common in myeloma treatments. I know of too many that tried too hard to reach remission. They did, but they over burdened their vital organs and didn't make it. My first day of this higher dose infusion stung a lot. I was dizzy and fuzzy afterwards. I should not have driven home, but I did. Always trying to be too independent. I always follow infusions with a lot of hydration via IV, plain water, and cranberry juice diluted with a lot of water. Cleanse those organs. Today, I asked my nurse to slow the infusion down. That was magic. No pain, just a little stinging. If you do IV infusions, don't rush it. Everyone is rushing about. Rushing to get to the next event. Rushing this, rushing that. Focus on the moment. Breathe. Make the moment matter. Make the moment comfortable. Speak up. I've learned. It's ok to not be strong all the time.

Today's chemo lab higher dose Kyprolis survival selfie. 
I wonder what my "crash" will be, 
when Dex Roids wear off and this kicks my butt..
(Here's a great list of current myeloma meds)

My stupid, ridiculous horse poop trash can tripping and diving injuries are healing. I have lovely purple and yellow bruises on my face, arm and leg. But I am better. I hurt, I'm still swollen, but I am laughing more than I hurt. Live your life. Have fun. Be careful, be deep, be thoughtful, but be silly. Find joy in everything that is joyful to you. Yes, I'm right back out there scooping poop. I laugh at the contrast of being in the chemo lab for serious cancer chemo infusions one moment, then the next I am doing ranch chores. My horses (and all the other animals) have no idea my circumstances. They just want food, water and scratching. I love my life beyond cancer. I am very blessed and very grateful.


It's late, and I wasn't going to ramble and write this much. It just happened. Day 2 Dex to blame lol. It's really late, but so serene and peaceful. I have the windows open, there's a soft warm breeze coming inside. I've been hearing a hoot owl hooting for over an hour. Sounds so magical, mysterious. Makes me feel so alive, so grateful. I never ever forget that I've cheated death for 6.5 years!



Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!



7 comments:

  1. Simply awesome post. Thanks for sharing with the universe.

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    1. Thank you for appreciating my blog from across the globe! How'd you find me? Do you know someone with myeloma? Thank you for checking in!

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    1. Thank you for enjoying my blog and commenting from across the globe! Do you know someone with myeloma? Thank you!

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  3. Great post Julie. I didn't get infections during my SCT but a lot of what you described, I had too. I'm not sure I could go thru it again, ever. I'm amazed at people,like Pat K that went thru 3 SCT. I certainly would not have that fortitude. Hey, I was a counselor too. My masters was in MFC counseling. I started a PHD program many years ago but never finished. so we have a lot in common.

    ReplyDelete
    Replies
    1. Christina! OMG! I cannot believe our life similarities! Wow!! Yes, I agree with you on all that. I feel so devastated for Pat's loss. I just think he tried to hard to achieve remission and the elusive "cure". He just burned out his organs with such intense high dose treatments! Wonder what his Drs have to say on this retrospectively. Such a loss, such a tragedy :'(
      I will email you. Crazy lives we have, but so glad to connect with you! xoxo

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  4. nice blog post. If anyone wants the best FUE hair transplant Doctors in India the you can visit our centre. We provide the treatment at low cost.

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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.

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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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!


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.