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Saturday, October 7, 2017

This Unexplainable Life... So Many Why's

Hello October
Hello October 7, 2017

I must say this week, for so many many people has been the extremity of extreme sadness, shock, anger, dismay and infinite "why's". My heart is heavy for so many reasons, and for so many people near, dear, and close to me and my family, and those I only know from what I have seen, read and heard. The hate and evil that lives and dies in the monsters that slaughter others, is completely incomprehensible to me. My heart aches for all the innocent lives lost in Las Vegas, and for their families, and for those in attendance, and all those impacted by this heinous act by a sick sick madman...  But yet, we all must move forward, in an attempt to heal..
No matter the situation, event or diagnosis, many experience "survivor's guilt". Sadly many touched by the Las Vegas event will be haunted for years, perhaps their entire life...
As I come closer to my 8 year Myeloma diagnosis anniversary, I can't help but think, why have I been able to survive Myeloma this long, while others are diagnosed and soon don't make it.
Or others do treatments similar to me, then don't make it. Then others don't survive the Stem Cell Transplant process. Or others that do, then either never achieve remission, or treat for a while afterward the SCT, then don't make it. Or others that suffer grueling side effects, multiple combinations of treatments, then don't make it. Or others that survive quite a few grueling years, then their life is stolen from them. More and more I am incredulous I am nearing my 8 year anniversary.

I know I have been through a lot. I know I have experienced life changing side effects from myeloma and the variety of myeloma treatments I have been on in 7 years, 10 months. I know I am a "mini-miracle" on many levels. I am in awe of myself and my medical caregivers. I cannot thank them enough. I cannot express my gratitude to all those in my medical, pharmaceutical, research, care providing circles. I am just a bit awestruck when I really comprehend my journey!

And sometimes, I have a bit of "survivor's guilt" myself.
Why I have made this far? Why have I "almost not made it" several times, then I did? I am "high risk IgA Lambda Myeloma. My numbers have been over 10 times the high end of normal. I have experienced several treatments becoming "refractory". I have experienced a severe life threatening infection during my SCT. I have experienced each treatment I've been on work like magic, then in less then a year, stop working. I have been ecstatic and terrified. I have been shocked at my status in so many ways, so many times.

And here I am, at 7 years, 10 months, happy to report, that I am again, and still doing well. Darzalex, Pomalyst and Dex steroids are continuing to pummel those life stealing myeloma cells. According to my recent labs this week, my body is remaining strong and battle-worthy. My critical organs are remaining strong. My CBCs almost "normal". My immune system is rallying, close to Neutropenic, but not! I just completed my 21 days of Pomalyst, and my ANC and WBC is quite low, but not Neutropenic low as in past months. This cycle I will not need Neupogen Zarxio shots!

Today I begin my 7 day Pomalyst break, while continuing on my Darzalex break, as I am now on the monthly infusions. And I'm doing ok. Actually more than ok! How am I so "lucky"? So many times I really thought I wasn't going to "make it", then we find another medication, chemo combo, immunotherapy elixir, and here I am! Yes, sometimes I do have a bit of survivors guilt. Most of the time, I am just in awe...

I had my monthly oncology appointment on Friday, and as always the office and chemo lab was so busy, so my sweet RN forgot to release all my myeloma marker labs. I will contact her on Monday, and will post my IgA, as it's holding steady in the 500's (normal range = 70-400). I think it even went down a few points from 520 last month to 502 now! Still high, abnormal, but hey, not in the 4100's like it was before beginning my magical triplet of Darz, Pom, Dex late February of this year. I was so worried doing a "triplet", but I swallowed my fear and accepted that my type of myeloma has to be hit hard, and with multiple "agents". Yes, I'm a slow learner, and fearful of new unknown side effects.


Yes, everyday presents small and large challenges for everyone
Everyday presents a new mountain to process and attempt to climb
Everyday I seek "no drama", serenity, peace, beauty, laughter, love and fun
But everyday seems to greet me challenges, albeit little ones, but challenges none the less...
This week, we had to make a very difficult and sad decision...

 Binkx
July 1997 - October 2017
Each day is a gift... 
Live, love, each day. Be kind, forgive, understand...
For 3 and a half years we diapered our disabled, now 20 year old cat Binkx.

Yes it was challenging, yes it was stinky, yes there were days I didn't think I could do it another day in my "immune compromised condition", but we persevered. We took care of Binkx because his body failed him, yet his mind and spirit was so strong.
He purred when we cleaned him. He pawed at us if we cleaned him too "roughly". He meowed when he needed "to go". For over 3 years he slid himself around to eat, drink and do what he could. But this past month he lost weight. His old man bones, became sharper. We felt so bad for him.

We continually asked, "are we extending life, or prolonging death"... "What does "quality of life really mean"... Questions I ask myself all the time... for my future...

Binkx showed us signs this week that he was tired, sore, his body was tired, his butt sore. I was layering 3 diapers on him for cushioning. But he still always purred. Always...

He lived 20+ years and was a daily reminder to me of strength, love, stamina, taking one day at a time, and how life is so fragile, yet so amazing, no matter our "suffering"... reminding us how each day can be beautiful, no matter the challenges. He reminded me of my struggles and his struggle gave me strength to always move forward and be grateful for those that care for me, and to those that have helped me survive 7 years, 10 months.  He gave me strength by example. He never seemed to give up. He adapted to his uncooperative body. If he could talk, I always wondered what he would tell me, what decision he would have made 3 years ago forward... 

 Good bye strong warrior, I learned so much from
Forever in our hearts

 

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


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2 comments:

  1. KarenOctober 07, 2017

    Julie...I am so so sorry for your loss. Tears are streaming down my face..Binkx was very fortunate to be a part of your family..and you were very blessed to have him in your life..Karen

    ReplyDelete
    Replies
    1. JulieOctober 20, 2017

      Hi Karen, thank you so much for your understanding and empathy regarding Binkx the amazing kitty! It truly was a hard decision, but we finally came to realize we were "prolonging death", not "extending life"... Our Vet put it this way, "is what you are doing helping him get well... will he, can he get better.. is this extending his quality of life?" etc...
      Even tho his mind was so crisp and responsive, I felt so bad he was totally dependent on us for cleanliness and his bio needs, and it would only deteriorate more over time.
      It's very quiet in the kitty room with the 2 girl kittes. But I am relieved Binkx is free of his physiological suffering.
      Was such a daily reminder to me, of all the human patients out there in the same situation...

      How are you and your hubby doing Karen. Thank you for being such a loyal follower 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.