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

Friday, July 13, 2018

Zometa Backlash, I Can't Handle the Pain... Sometimes Myeloma Wins

Hello Friday The 13th!

7.13.18 - Friday the 13th.
It's so ironic, and so fitting that I've had awful, pain beyond painful pain, these last few days, as 8 years ago this month, I was at City of Hope Hospital, experiencing all the yucky Melphalan chemo, Stem Cell Transplant Crash side effects. I was in the middle of the process, with my CBCs near nothing, feverish, trying desperately to survive and heal, fighting to become me again, desperate to get from the hospital to home.

So how fitting I had my first Zometa infusion on Tuesday, along with finding out about my Broken Rib. Of course my "friend" Dex Steroids propped me up that day, but it was all downhill from there these last few days, and I thought I would never come out of the pain, fever and awful physical suffering that I endured from early Wednesday through all of Thursday, and Thursday night, and into today Friday the 13th, and I suspect onward for several days...


I wrote the following thoughts early this morning, after 2 1/2 days of the worst bone, muscular, nerve, feverish pain I have experienced in a very long time, if ever? I don't know... I have so many incidences of pain to recall now, I can't remember...

%%%%%%%%%%%%%%%%%

True (unfiltered) Confessions of a Tired Cancer Warrior

Sitting on the edge of my bed at 2:30am weeping from the depths of my extreme pain, and frustration with my ongoing, never-to-end-battle with myeloma, I questioned whether I could keep doing this... The pain was just unbelievably excruciating...  

8 1/2 years is a long time, for me at least, to be sick and in a constant battle with my body.Too long (for me, who used to be so healthy), to be constantly challenged. I am fighting an internal monster that is much stronger and smarter than my body, and eventually always stronger than all the medications I have taken or will ever take. Myeloma will always mutate and outsmart any treatment I do. I will never have a break, never "remission" without continuous chemo. Never, Ever.

Simply put, if I want to live, I must treat, always, continually, non stop. This is my myeloma life sentence. Yet I am so tired fighting and feeling awful for most days of every week, except on steroid days. I am not as strong everyone thinks I am. I really am not. 

To be candid friends, most of my (facebook) posts, where you all so kindly compliment me on my smile, my energy, my fighting spirit, are the days I am all "Roided up", "Dexified" (as my dear myeloma cowgirl Jan calls it), on powerful medical steroids. Dexamethasone is a fun, crazy making medication the first day or 2. It energizes me, gives me fake euphoria, temporarily heals my body, mask's pain and even has strong myeloma killing properties. But as anyone who drinks or drugs knows, the crash crashes you, and the physical awfulness eventually overcomes, enveloping your body, your entire being for days. 

So I retreat into a yucky blah, for days, only to surface again for the same drill. Chemo, steroids, chemo, steroids, chemo, steroids, the next week, the next week, the next week, the next week, for my forever... Imagine knowing that EVERY WEEK OF YOUR LIFE, YOU WILL BE SICK from side effects. Every week you must plan your life around when to be sick, when to crash, when to feel awful. Every week for the rest of your life.


And the crazy irony is I'm "sick" from side effects of medications trying to make me "well". Yes, I have to be sick in an attempt to be well. I have to be sick, to survive, I have to be sick to stay ahead of myeloma. 

BUT WHAT SENT ME into the depths of "I CANT TAKE THIS ANYMORE", "I dont know if I can keep suffering like this any more, with literally no end in sight", was the horrible, unrelenting PAIN I experienced from Tueday"s new IV bone strengthener, Zometa infusion. 

I expected side effects and was mentally prepared for "something". But the something turned in to a fever as high as 102 -103, with unrelenting deep bone pain and body aches as I have never experienced. The depth of pain is truly indescribable. I couldn't get relief. Yes, I only do advil and tylenol, as I don't want to chance another side effect making me feel sick.

The unrelenting deep ache was overwhelming. I paced, I sat, I reclined, I stretched, I walked, I kneeled on the edge of my bed, awkwardly angled to try to sleep. I tried a heating pad, Solanpas, and those menthol minty ointments. I hydrated, but had little appetite. I cried and I cussed. The fever exaggerated the pain too. And at my depths, I looked skyward and cried, "Why me, Why?" "I can't do this anymore"... 

I'm really not strong friends. Well yes, mentally I am, but not physically. I can handle most things of a psychological nature, but each time I am confronted with REAL physical pain, I crumble. I don't know how most people who live with worse challenges than me, do it. And in comparison, my challenges are tiny, compared to others. I am not strong friends, and I am so very tired of this battle... 

I woke up today with less a fever, and without as much killer bone, nerve pain. I can breathe better, and I have a better perspective. I still feel like I was hit, rolled over by a giant tractor with huge spikes, but I am better. But I don't think I will do this medication again... I am not strong, I hate pain, and I hate suffering. 



Thank you for reading and being loyal blog followers! 


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




7 comments:

  1. Julie, Talk to your doctor about Xgeva. While many people only react badly to the first dose of Zometa, some really don't tolerate it all that well. Xgeva is a shot, not an IV. It is not tough on the kidneys like Zometa is, and, there is a chance it might be more effective than the IV drugs they've been using for MM all these years. My dad had it monthly while he was on chemo for lung cancer and had no issues with it.

    ReplyDelete
    Replies
    1. Yes, thank you for reminding me of that! Others have mentioned it, but I was too "confident" I would do "ok" on Zometa! Wow, was I wrong!
      And I just read your post about Tim and your Dad, so very sorry for Dad's issues, and I hope Tim stays in the "safe zone" for a long time!
      I smiled at your comment about FB, as I feel exactly the same way! Everyone's out there having a fun time, we're over here, going to non-stop medical appts and procedures. Vacation and fun events are just make believe for us now.
      I have a lot of same issues with my older hubby, that you mentioned your parents are going thru...
      Old age is not picnic, and the "golden years"
      Hang in there, and one day at a time, right :))
      Thanks for checking in and commenting!!

      Delete
  2. AnonymousJuly 17, 2018

    Hey J,

    Steve here...long time no post :) I was dx'd same date as you. I agree with above post. Also, don't suffer that kind of pain, get some freakin' REAL pain meds from your doctor, for Christ's sake! And remember, if you don't strengthen your bones, you could end up paralyzed sooner than later! Don't risk it!

    ReplyDelete
    Replies
    1. Hi Steve, your comment made me laugh! I know, suffering sucks, and I don't have the patience or tolerance for "trying to be strong" anymore. No point right! BUT, when you say REAL pain meds, which ones are you referring to?
      I've just heard, read some not so pleasant side effects from "big dogs"... And as I always rant, I just don't want another side effect to deal with!
      So suggest some stronger stuff, that won't give me GI side effects :))
      And tell me your MM story since you have the same Dx date! WOW. And tell me what meds you've been on and how your myeloma is behaving.
      Thanks for reading and commenting.

      Delete
    2. AnonymousJuly 18, 2018

      Hey Julie,

      "I've just heard, read some not so pleasant side effects from "big dogs"... And as I always rant, I just don't want another side effect to deal with!"

      Yeah, what have you heard?

      "And tell me your MM story since you have the same Dx date! WOW. And tell me what meds you've been on and how your myeloma is behaving. "

      Well, when I say same date I'm referring just to December, 2009.

      I know many folks like to tell their medical "war stories" but I'm not one of them, but thanks for asking.

      Briefly, I haven't had any treatment in the last 5 years or so, except for 24 months of Zometa, with no side effects whatsoever.

      "So suggest some stronger stuff, that won't give me GI side effects :))"

      Julie, no one can predict what pain medication will or won't give any given patient side effects. Talk to your Doctor with a open mind about the various options. It's your choice...side effects from meds... or side effects from MM!

      Take care!

      S.

      Delete
    3. Wow Steve, 5 years no treatment! Go you!! You've sure successfully put myeloma in it's place. And thrilled to read that you and Zometa got along fine. Crazy how things morph so differently for everyone! Happy you are doing so well!

      Delete

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.