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Saturday, July 28, 2018

Sick of Being Sick and Other Myeloma Nonsense

7.28.18

Yes there was a time in my life when I was well. Well all the time. Took my body and body functions for granted. Living a "normal" life, with only the "regular" annual bugs parents and kids get. I really never thought about illness or sickness, only when we were, and then we all got over it.. Never thought about what it would be like to feel "sick" and exhausted all the time, and never occurred to me to "plan" for being sick.

Now that's all I do. Feeling sick, being sick, thinking about illness and sickness, avoiding being sick from unplanned cootie contamination, or planning when I'll be "sick" from medication side effects. Even after 8 and a half years, it's still so strange to for me to "have to" focus on, plan for, be aware of sickness and feeling sick. Just so weird still. Spins my head being "sick" each week. Sick for me is unrelenting fatigue, achy, weak muscles, joints, nerves, bones, headaches, bloating, swelling, some GI issues, all around malaise and so little energy. And then on top of the weekly "predictable" medication crash, there's the surprise sicknesses, or new yucky side effects, new pain, fevers, from myeloma morphing, mutating all the time, and daily, weekly, monthly, myeloma treatments.


I'm still reeling from my July 3rd broken rib incident, and then the awful, horrible, painful, pain beyond pain, high feverish reaction to my first Zometa infusion July 10th. I finally began to feel better this past week, and 40mg of Dexamethasone steroids helped. After about 9 days the fever was finally gone, and slowly the crazy achy bone, muscle, joint, nerve pain lessened and subsided. I still can't believe all this happened to me. I thought I'd have the "normal" Zometa side effects for a few days, not the EXTREME torture I had for 2 weeks! I just don't see myself as a "sickie" and I just can't stand feeling unwell all the time. Just not me!

So just when I started to feel relief and think I'd get a break this last week of July, before my next round of chemo July 30th, boom!, body sabotage hits me again. My blood tests reveal I'm Neutropenic AGAIN. Yep, did my monthly Labs yesterday, July 27, and in no time heard from my Dr that I'll need to start 3 days of Neupogen Zarxio injections, as my WBC is 2.0 (4 - 11 normal range),  and my ANC is .71 (1.80 - 7.70 normal range), yes "point" .71

Whoo hoo. Isolation Bubble Time... again..., no events, no eating out, no crowds, no fresh fruits and veggies, etc etc etc Hello Neutropenic life, Neutropenic diet...  Time to grab some belly fat, and stick that needle in. Just like tossing a dart at close range :)) Get in my cells magical Zarxio and pump up my immune system!

OMG, just read the fine print on this!
"Derived from E-Coli"!! Whhhaaaattt??!!!
What the Heck! Medication to build me up
is derived from sickie cooties!
Ugh, have to read up on this for sure!

================

Forgive me if I sound whiny, as I am always super aware of how awful "It Could Be", and how challenged so many of my myeloma pals are, not to mention 3/4 of the world! But all this affects me so much, as I was so well for 48 years of my life. And just as I was getting over the broken rib pain, and the crazy Zometa reaction, our A/C died when it was 110 for days, my dryer tried to start a fire and burn our house down, I walked into a black widow web, and was almost bit, and one of my horses was on the verge of Colicing in this horrible HOT weather, and I have more and more "caregiving" tasks for my ol hubby, as he too, is being sabotaged and betrayed by his body...but that's a whole 'nother blog...

As a Counselor for 35 years, I was focused on helping others analyze and solve their issues, and I was super focused on my family life, so I didn't focus on me. I didn't need to. Now, sadly, myeloma "forces" me to constantly think about my situation, and constantly "feel" all my physical side effects. I'm "sick" of me and my issues... 8 years, 7 months is a long time... soon 8 years, 8 months... is a long time to be focused on staying alive, a long time to be treating incurable cancer, a long time to feel unwell, and a long time to always be surprised by unwanted side effects... 8.8 years... wow... waahh, waaahhh...

Anyway, here's my Neutropenic labs:



And the first hint of myeloma on the move-
I'll see all my labs on Monday, July 30
at my next Dr appt and Darzalex infusion


And lest I forget, 8 years ago TODAY, July 28, 2010, I was finally released from City of Hope hospital, after being there for all of July, for my Autologous Stem Cell Transplant. How fitting that I'm Neutropenic this month, and have had so much myeloma DRAMA, right! Just a "little" reminder of what I went through 8 years ago! So no complaints, as I haven't been hospitalized since then, and I hope to be able to continue out-patient treatment for a long time...  

This was an amazing crescent moon earlier in the month
with Venus close by!


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


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6 comments:

  1. AnonymousJuly 28, 2018

    Hey J,

    Steve here, again. Just a note to say I hear you and can relate to the unique pain that is chronic pain/illness. Sucks the big one!

    Here's a link to one of my favorite articles on dealing with chronic pain that I think you might appreciate, from Social Work Today.

    http://www.socialworktoday.com/archive/070714p18.shtml

    And btw, the failure of your team of MM physicians to complete a baseline PET/CT on you, some years ago in fact, is INEXCUSABLE! This is particularly so given the IMFWG position on same! It is commonly understood among MM specialists, and has been for a number of years now, that radiographic imaging (X rays) is inadequate to reveal MM related bone destruction until at least 30% of the outer bone layer has been destroyed! Using x rays for MM patients is old school! Your MM physicians should have known better! But of course, what's done is done, time to move forward with MONTHLY ZOMETA TREATMENTS! Immediately! No waiting!

    Take care.

    S.

    ReplyDelete
    Replies
    1. JulieAugust 01, 2018

      Hi Steve, thanks for your support and being upset over me never having a Pet CT Scan in 7 of the 8 years of my MM Dx. I agree, but I also know that I didn't have extreme bone pain, or bone pain causing alarm, or bone pain like I read other MM patients have, or broken bones, or fractured bones, etc, so I was in in La La Land thinking, "oh, I'm IGA, so I don't have holes and lesions" LOL. I had pain, but I felt it was muscular, nerve, pulled muscles, etc. Who knows, can't go backwards now, and I don't think my Tx would have been much diff, knowing about my holes. Who knows how long they've been there??
      And did you miss my HORRENDOUS REAX TO ZOMETA!! OMG, I WILL NEVER EVER DO THAT AGAIN, and my Drs agree. I had a serious reax to it. Maybe Xgeva in a few months... Thanks for your detailed info and reply!

      Delete
  2. UnknownJuly 29, 2018

    Hi Julie,

    I have been following your blog for some time now. I am 54 and was diagnosed with mm 3 years ago. I am status post ASCT and now on second line therapy with Dara/ Rev/ and thankfully now only 4mg of IV dex as a pre med. I find myself drawn to your postings and can identify with you in many ways. I have continued to work full time as a registered Nurse in palliative care ( ironic don't you think). I have two daughters. One just graduated from college and the other is going off to colllege in August. My husband has been a great support through all of this. Lately every time I read your blog, CART cell therapy keeps screaming at me. Forgive me if you have discussed this previously and I understand your fear of anything new. The karmma trial has a site at UCSF. I live in Fresno CA but had my transplant at UCSF. I am still followed very closely by my myeloma doc there. I am very impressed with UCSF. It looks like you meet all the criteria. Forgive me for being so bold but I am very excited about this treatment. Take care and I send positive energy and prayers your way.
    Letty Baldwin

    ReplyDelete
    Replies
    1. JulieAugust 01, 2018

      Hi Letty! Thank you so much for enjoying my blog and writing and letting me know :)) Looks like we were both DX around 50, altho, I'm older than you by a few years. So glad you're doing well on your treatment. Are you on Darza monthly now? And go you for being able to work FT!!! Can't imagine that. I worked PT for years after my SCT, but Revlimid caused me such drama with lower GI issues!! But you being a nurse, you probably take the appropriate meds, to be able to function well! And fatigue always sabotaged me too. You are very strong to be on the Tx you are and working FT!!!
      Yes, I have another MM acquaintance who successfully did the CAR T at UCSF. She seemed to breeze thru it, and it was very successful for her. The longer I have MM, the less "brave" I am. At this time, I am not wanting to do another SCT or CAR T. I am just so tired of not feeling well, and the idea of going thru that process, just takes the wind out of me. I'm ok limping along on the meds that keep my IGA MM controlled. I'm going to do a little update post today, and I will mention my new plan :))
      Tell me more about working in Palliative Care. Wow, go you for being so strong!
      Thank you again Letty for enjoying my blog, and writing to let me know you and your story!! :))

      Delete
  3. UnknownJuly 30, 2018

    Julie,
    I am thinking of you everyday. I can only imagine your feelings of being sick. I am always here for anything...as your friend and medical issues.

    Jan

    ReplyDelete
    Replies
    1. JulieAugust 01, 2018

      Hi Jan! Thanks for checking in! I appreciate all you have done for me, and I will never forget our 2010 Neupogen adventures! I will message you, so we can all finally get together. Jim is slipping all the time...
      Love to you and the family 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.