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

Monday, August 31, 2020

Changes Coming, So FRUSTRATED!

8.30.20
8.31.20

Hello Friends, 
Dr appt today, I will report back and update you on my lab results and plan...

(Update... No update, lol... Labs still not back yet. Dr thinks it's due to all the Covid tests backlogging everything in the processing Labs. Will update this update when I have my IGA and M Protein status back... but then again, the waiting is actually kinda nice, so I can live in LaLa land for a few more days... Haha... I know they're bad... see what I mentioned about my Beta2 Microglobulin below...)


I am soooooooooooo angry, sad, pissed, upset, devastated with my situation
Finally tho, I am feeling less pain in the areas of all my tumors and lesions
Finally less pain from (what I think) was caused by Elotuzumab/Emplicity
Finally month long fevers are lessening
All my labs (from my lovely visit to Urgent Care), came back NEGATIVE for any virus, bacteria, pneumonia, etc. Negative, everything Negative. No bugs and germs inside of me. Just low low low CBC levels.
Everything I am experiencing is from frkn Myeloma consuming me, and recent treatments
I am so sick of being sick!
Don't understand why I received this life sentence
I am not strong, I just do what I have to do, to stay alive
And that's not really effective any more...

I am exhausted, beat up, have little life (yes I am grateful for all that I do have), but I am so very very frustrated that Myeloma has stolen my life, makes me feel so sick 24 7, and is seriously trying to kill me. I had so many plans for this time in my life. Yes, sorry, I do whine, WHY ME, WHY ME?


Appears current Dex, Velcade, Revlimid is NOT really working. 
Shocker Julie, what did you expect, going backwards to 2 previous chemos you're Refractory to.
But did this cuz I just can't stand the idea of any more side effects right now! the Elotuz side effects just did me in. July and Aug worst months ever!
Cannot see all my lab results from Friday... that's another thing I'm pissed at. Patients should be able to see all their labs as they come in. But again, I understand they restrict "bad" results, because many people panic. 
Need to get my Dexified emotions under control for appt this afternoon
So much I am feeling out of control of, and I don't like it,,,

As just a hint of how bad I am: 
Beta2 Microglobulin at Dec 30.2009 diagnosis was 4.3 (70% myeloma cancer thru out me)
Current lab result is 5.7 (so I'm probably 90% myeloma cancer now)

OMG, this cannot be my life. Someone stop this awful movie I am in! Jim continues to decline daily. We moved his hospital bed into the family room the other day.
He can still get up with lots of physical help, emotional support, and caregiver muscle, but he's in a wheelchair if not in bed, needs help with everything, and of course everyone turns to me for help, recommendations. I cannot help. I don't want to help. I am so exhausted from me and my issues, (except on Monday 40mg Dex steroid days lol), I look awful, rarely fix myself up anymore, I don't want to be a facilitator, for anyone or anything right now, but I have to, too many lives here I am responsible for. I don't have the energy to help myself, let alone him, and all the responsibilities around here, but I don't have a choice. Seriously incredible all I still do and all I have done these past few months of torture and pain and fevers. (Actually incredible all I have done since my Dec 2009 diagnosis! Stupid me...) Jim's caregivers and our adult kids are so awesome with all the help they give us. They help with Jim's issues and all the household chores. Couldn't do it without them. I feel so bad how much I rely on our kids, now for driving, chores, counseling the counselor, chores and more chores... but they are happy to help around their work schedules. They had an incredible life growing up, and they are happy to help us now, as the roles are reversed. Never thought it would be like this "so soon". I was supposed to need help in my 80's lol, not 50's and 60's .... 

Sorry, I could rant forever with all my pent up emotions. Never been so frustrated, sad and out of control in all my life. I am not the Julie you all once knew...

Ok, need to make a list of my next myeloma medication options to bring to my Dr. I will try to rein in my emotions, so I don't lose it with her...

Thanks for reading and caring and commenting. I will write this blog until I cannot. Have even been thinking what my "last" blog post might say... 

xoxo Julie 




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6 comments:

  1. AnonymousAugust 31, 2020

    Hugs, tears, I am so sorry. Jan

    ReplyDelete
    Replies
    1. JulieSeptember 06, 2020

      Thank you Jan. Yes it's been a journey I never expected to be on, let along suffer as I have, along with Jim's situation. But thankfully better each day now, as fevers are "gone" and pain is slowing lessening xoxo

      Delete
  2. Sheri BakerSeptember 01, 2020

    Please Julie, don't start thinking about that "last" post yet. It is breaking my heart to see the myeloma "break" you. Have you seen anyone for a second opinion about treatment options? Sometimes new eyes on the situation can help. Always thinking of you. Hugs.

    ReplyDelete
    Replies
    1. JulieSeptember 06, 2020

      Thank you for caring as you do Sheri, but I can't help but think of "my last post"... but thankfully I have turned the corner and my fevers are "gone" and the pain is lessening every day. Yes, I read all the time about all the new MM meds, but it's me that is afraid to try new combos after what I think Elotuzumab did to me, so I am going with old meds in new combos that I haven't done yet. I just can't stand being sick and having all these awful side effects xoxo

      Delete
  3. KellySeptember 02, 2020

    Julie.. and don’t you get tired of hearing how strong you are? I love how you put that you aren’t strong... you just do what you have to do to stay alive. No one truly understands what that means until they have been in your shoes. Besides all the side affects I am so sorry everything hurts. I am happy to hear though that your pain is somewhat less and you don’t have the virus on top of everything else. It’s not fair!!! I agree. I hope you will give yourself a break as much as you again and let others be there for you more as it appears you have been there for all of them. Sending you big hugs and lots of love. I will be praying for you and Jim and the kids. That is the only thing I have control over... my prayers and I am praying for miracles all the way around. You know how to reach me if you need anything or want to yell, kick, scream or cry in unison. Xo

    ReplyDelete
    Replies
    1. JulieSeptember 06, 2020

      Thank you Kelly for all your support and caring, and following my blog. Yes this stupid MM is almost breaking me, but I am finally feeling a bit better and feeling hope again. And yes, I am not strong, just one foot in front of the other, and just trying to survive daily with both my situation and Jim's Alz. I never understand how we both wound up with such serious and awful diseases... Thank you for reading and understanding my perspective Kelly xoxo

      Delete

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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, 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!


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.