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Friday, April 19, 2019

Meltdown 101

4.19.19

Hello world...

This week was total MELTDOWN week for me... Total Emotional Meltdown :((


So much to tell, share, let go of... but I am too beat up, too exhausted...

So here's the headlines:

Had to call 911 for my hubby on Tuesday, as "he fell and couldn't get up"...
He was taken to ER, fortunately ok, nothing broken, fractured
On top of that, he's really declining each day
New challenges for him, me, our family every day
Never ever expected any of this sadness and illness chaos
So much physical and psychological challenge every day...
So much body betrayal on all levels



Had my monthly Dr appt on Monday, with lousy news:
IGA up 200 points, @ 1440 ...(normal = 70-400)
Last month's "no M Protein" was a misread or fluke
M Protein is actually up, at 1.19 ...(normal = zero)
Beta2Microglobulin is 2.3 ...(normal = 1 - 1.8)
Light Chains = low or normal

New changes:
My Dr and I discussed increasing my Velcade and Cytoxan dose
If you've been reading my blog for a long time, you know my response to that... NOPE!
One change, one increase at a time for me
Less is more
Let's see if one increase works
Let's see which increase causes which side effects, rather than increase both, and not know what side effects are happening from what

So I agreed to increase the Velcade dose
Received 2 lovely injections on Monday
Had nausea later the next 2 days
Ok now, better
Hopefully this increase will pound myeloma's ego back a bit
............

I had a complete emotional meltdown this week... not about me
I'm learning to reach out and ask for help
It's ok to ask for help, it's ok to not be strong
I call medical professionals more now, than I ever did with my cancer situation
I cry, yell, sob, scream, talk to myself, talk to the Universe, and experience the spectrum of intense emotions more with my husband's situation, than I ever did with my myeloma diagnosis, treatments.
I am just completely overwhelmed and devastated on so many levels.
Of course my treatments and side effects complicate it all, but watching him decline and see Alzheimer's completely steal who he is, how he is, what and who he used to be able to do... is just so incredibly tragic, awful to see and live, day in and day out...

I'm sooooooooo beat up...


I will write more next time... I hope.
Thank you for reading and caring, and checking in!






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9 comments:

  1. OsabravaApril 20, 2019

    So sorry to hear about your husband's decline and trip to the emergency room. Hope you're getting the support you need to cope with the situations you're faced with. Please take the best care you can of yourself, you're important to all your family and friends. Holding you in my thoughts with wishes for the best outcomes possible, Bernadette

    ReplyDelete
    Replies
    1. JulieApril 25, 2019

      Hi Bernadette, thank you so much for your kind words of support and caring. Yes, thankfully I have a wonderful network of support- real and virtual- (virtual friends like you, and the ladies below too! :)) Also, our Kaiser home health team is just a phone call away. BUT, my biggest dilemma for support I need now, is my husband needs 24 7 care, as you can imagine what a strain that has put on me, with all my myeloma complications. With my compromised immune system, I am hesitant to have a parade of caregivers in our home. I need the help physically for him, but I just don't want to risk getting cooties from caregivers that are caregiving at other homes. Our adult kids are great, and just a text or call away, but they work and have a lives too,, but have been so wonderful... ugh this is worse than myeloma. Thank you Bernadette for always reading and commenting xoxo . Hope your life is simpler and you are doing well xoxo

      Delete
    2. OsabravaApril 29, 2019

      Hi Julie
      I can only imagine what it's like to find yourself having to navigate myeloma and your husband's Alzheimer's at the same time, and I hear how concerned you are for him and your ability to deal with it all. I have confidence though that you'll do your best to make it work out the best you can. That's really all you can do, just don't forget that people want to help, maybe more than you know. Sending best wishes for great support and creative solutions that work. Bernadette

      Delete
  2. Sheri BakerApril 22, 2019

    We all care about you, and always will. Even if we only know you "virtually." My thoughts are with you and your family.

    ReplyDelete
    Replies
    1. JulieApril 25, 2019

      Hi Sheri, thank you so much for your kind words of support. I value all my "virtual" friendships from my blog and others. I do feel your caring, and know you have been following my crazy life adventures for quite some time now, and I really appreciate you continuing to read and comment! Thank you for your support and caring xoxo

      Delete
  3. UnknownApril 22, 2019

    I am so sorry that your counts are increasing. I am also sorry to hear about your husband's decline. Alzheimer's is a terrible disease. Thinking of you and hoping that the increase in the Velcade will lower your counts. This is Jewell.

    ReplyDelete
    Replies
    1. JulieApril 25, 2019

      Hi Jewell, thank you for your kind thoughts of support. My life is surreal with both our illnesses. One day at a time, is how I'm handling it, and I'll find out mid May, if the Velcade increase is pounding myeloma back. Thank you for reading and commenting xoxo

      Delete
  4. WendyApril 24, 2019

    Even though we only know each other virtually, I am thinking of you and your husband and am sending out positive vibes. I do think it can work, even though I wouldn't consider myself a spiritual person. I love the pictures you've posted.

    ReplyDelete
    Replies
    1. JulieApril 25, 2019

      Hi Wendy, thank you for your positive vibes and kind thoughts. I value your continued friendship and all my virtual friendships from this blog! It's wonderful knowing all of you are out there reading and caring. Thank you for enjoying and appreciating the pictures I post 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.