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Sunday, September 16, 2018

Managing Pain is a Pain in The *** ... Myeloma, you're Sending Me Over the Edge...

9.16.18

So I was going to post the other day, then the other day, and the other day, but Myeloma stole my life. I wanted to share my amazing CBC lab results from 9.9.18, the day before my Darzalex infusion on 9.10.18, but then life just moved forward and this craaaaaazy leg pain totally sabotaged me again.

I'm seeing a pattern now of this mind bending, maddening, intense, unrelenting bone, nerve, muscle pain. It invades when my weekly Dex steroids fade. For me, my 20mg or 40mg Dex steroids relieve my pain and inflammation for about 36-48 hours. Then this deep, resonating, incessant pain returns to my Left side rear, upper leg and calf, always at night, when I want to sit and relax or sleep. I feel it gradually coming on, as I slow down for the day, then it totally revvs up when I sit or lay down to sleep. Then it becomes totally unbearable at night from around 10pm to 2:30ish am. I can't even put in to words how awful it is... Guess I am finally understanding what most Myeloma patients experience with unrelenting internal body pain from myeloma's ravages. Sciatica is the closest I've come to a description of it, but it's so much deeper... but I've never had a "sciatica problem" before... so what do I know??


It's so hard to describe this excruciating pain as it's so deep inside my body, creeping in slowly and stealing my nights. I am only able to write this blog now, as I took steroids early this morning, so sitting is not driving me mad. The pain is not like if someone kicked you in the shin, or you fell off a bike or horse and had skin road rash. This bone, nerve, muscle pain is so deep. Deep and resonating and reverberating. It hurts and throbs. It radiates up and down my lower extremities. It's like internal drilling, but muffled. Does that make sense? Here's how it happens and what I do to try and alleviate it...

At first I thought it was just a passing, temporary event, once in a while thing. But looking back now, I truly believe it all began after the Zometa infusion disaster (see all my July 2018 posts!) July was just awful, awful with my broken/fractured rib craziness. Then my severe unheard of extreme sickness reaction to my first disasterous Zometa infusion (see my July 2018 posts :)  But I finally felt better in August, thought this ridiculousness was over. WRONG! I began to see the pattern of pain, when the steroids wore off. See, Dex saves me for about 2 days. Then when I begin crash, and the power of anti inflammatory steroids wear off... I'm done for! Previously, I had a pretty good tolerance for pain, but not any more, or what I experience now with Myeloma, is something from another Universe... this is just intolerable...

So for the last several nights, I've been in misery. When I feel it coming on, I start with low dose kid's Advil or Tylenol. Then if that doesn't help, I add the adult version. When that doesn't help, I add another one. Yes this is over the course of a few hours. Then I add Flexeril, a muscle relaxant, then I slather myself in Bengay, as that does seem to help a bit, and the lovely Wintergreen scent helps me breathe deeply, as by this time, the intensity of pain takes my breath away.

Between all this, I am trying to relax on the couch or recliner. Can't. The pain forces me to get up and walk, stretch, shake out my leg vigorously, walk, stamp my feet, etc, anything that can send shock waves into that area! But as I'm doing that, I worry I'm taking the chance of breaking/fracturing something. I worry I'll crack something with everything I do to try to alleviate the pain. Ugh, it's so incredibly frustrating not knowing what the heck is going on inside of me. But I have a MRI scheduled for this Wed Sept 19, to hopefully shed light on this disaster.

When I try to go to sleep, this PAIN has another plan for me. The internal resonating, vibrating, throbbing is just relentless. I try deep breathing to "will it away". I lay there thinking this just can't be happening. This can't be for real. When I can't stand it any longer and I get up, sit up, get my wits about myself, as by this time, I'm kinda dizzy. Then I begin walking, pacing, stamping my legs. I take another Tylenol or Advil. I slather on more Bengay. I'm soooooooooo tired I can't stand it. Literally, I don't want to stand, I don't want to walk, I just want to relax, to sleep. But my body won't allow it... my mind goes desperate places at this time... how long will this last, is the beginning of my "end". Is this how Myeloma patients die?

I decided this time to take 1 steroid pill, as I was due for my weekly dose today or tomorrow anyway. I never take Dex at night, but I thought, I just don't know what else to do, and it's a magical anti inflammatory. My plan then was to take the remaining pills in the morning...


Finally, I fell asleep. Whether it was from all the meds finally kicking in, the 1 steroid pill, or from exhaustion, I don't know. But I finally slept. I awoke around 7am and took the remaining 4 pills for a total of 20mg (I take the 40mg on Darza treatment days), and went back to sleep. INCREDIBLY I slept until around 11ish and couldn't believe the RELIEF I felt! You know that feeling when you find that perfect spot on your pillow and bed... well I had that feeling... and pain free. I felt 30 years younger. So AMAZING. I just laid there, totally amazed and savoring the pain free moment!

All this forces me to come to terms with my new painful life. I had a difficult day emotionally. Many forced realities sinking in. Wondering where all this is going... wondering if now, bone pain, body pain, life pain is now my agenda. I've been sad all day, and angry. Frustrated with so much. Treatment and challenges for 9 years is a long time. Can you even imagine being "sick" for 9 years. Yes I know there are hundreds of myeloma patients out there who have many more years on me, an that's so incredibly amazing. Everyone's journey is different. Everyone handles illness, side effects and pain differently. Myeloma presents itself so differently for everyone. My early journey was super GI challenging for years and years. Now the volcanic diarrhea is gone, and in place of it, I have unrelenting pain. Where is all this going... would I want to look into a magical crystal ball, and see my future??? Would you??

Today I spent time reading about side effects from all my medications. Yes, Darzalex, Pomalyst, Acyclovir, all cause muscular, nerve and bone pain. AND OF COURSE MY NEMESIS ZOMETA! So what am I to do? I have to treat myeloma, and all medications have side effects. If I lower doses, myeloma wins. If I stop taking these, myeloma wins. If I switch, what do I switch to? I'm running out of options... except for a few and then it's clinical trials, which scare the %@#! out of me...

So I'll suck it up, and at my next appointment, I will ask for "adult, cancer patient" pain medication. More side effects... ugh... Can I just go back to the 1990s?

Here's my original reason I was going to post last week :)) With all this pain, and craziness, I can't believe these CBC results! Maybe PAIN CURES MYELOMA?? ahahhaaa

OMG can you believe these results!
Haven't had "normal" CBCs since maybe 2007!!!

And whoohoo! I'm far from my
usual Neutropenic!!

Do you think they mixed my blood with someone else's??? LOL

Hoping your life is peaceful, fulfilling, fun, joyous and pain free!
More updates to come, as pain is just around the corner as Dex wears off, and so is my MRI on Wed 9/19, more labs probably that same day, and then Dr appointment and Darza treatment day on Mon Sept 24. So in a week I'll know the results of the MRI... wow... I wonder... just wonder WHAT THE HECK IT WILL SHOW... 

Thanks for reading, commenting and caring about my crazy myeloma journey. xoxo



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4 comments:

  1. MattSeptember 17, 2018

    Julie so sorry to hear about your body pain. You could try CBD oil which can help with the inflammation in a more natural way. And I'm familiar with how the body pain can impact you emotionally. It's a challenge. The good news is your blood counts look awesome and that's a great sign. Hang in there. And definitely we'll figure out a time to rendezvous.

    ReplyDelete
    Replies
    1. JulieSeptember 18, 2018

      Hi Matt, yes many people have recommended the CBD options, but I just don't want to deal with potential new side effects from a new substance, altho, I hear good things... so we'll see what my upcoming MRI shows... Hope you are feeling good, and don't have too many annoying side effects

      Delete
  2. UnknownSeptember 17, 2018

    Julie... I think about you everyday! You are so brave and amazing! I am praying the pain will lessen and mri will be as good as the labs. 😘😘

    ReplyDelete
    Replies
    1. JulieSeptember 18, 2018

      Hi there "Unknown", thank you for thinking about me and your sweet comment :)) I'm hoping for less crazy pain too, and looking forward to what my upcoming MRI will show. I don't feel brave at all... I just do what I have to do to stay alive... and I feel I'm less "brave" all the time... I dread new side effects, but know they're in the future for me, as eventually this treatment I'm on will stop working, and I will have to "brave up" and deal with a new cocktail and it's side effects :((
      Thanks for checking in and commenting, and let me know who you are :))

      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.