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Saturday, April 28, 2018

Unfiltered Frustrations

4.28.18

I'm still sick.
I'm so frustrated with my life
I am so sick of being sick
So sick of feeling, being sick all the time
So sick of trying to avoid being sick
Then getting sick anyway

Yes I'm very grateful for so many many things.
Yes I am still an optimist and I have a lot to be thankful for
Yes I am strong, a survivor, a cancer warrior, and so aware that I am better off than so many many many
Yes, I know, I really do know, how "lucky" I am.... blah blah blah...
But I am very frustrated with MY life
My life right now.

Sorry to offend, sorry to whine, sorry to feel so pitiful, sorry to sound so ungrateful for all that I do have going for me...
But I am so very frustrated with MY life.
My stolen life.
I'm still sick.
It's now been 3 weeks being sick.
I am better than a week ago, and a week before that.
I am a little better each day, but I'm still sick.
Sick for more than 3 weeks.
I am so frustrated with MY life.
My stolen life...
.
It started with a horrible sore throat. Just horrible.
Then the fever for 2 days. Just awful. I felt just awful. I cried.
Then the nose, the head congestion.
Then the cough. The never ending, never relenting cough.
Coughing all night long. Choking, hacking, all night long. Still.
This bug is relentless.
3 weeks!

Yes, all this is physiologically "good". Good that it is draining out.
Yes, this is the process of illness.
Yes I am grateful my body is doing what it should do to get well.
But sooooooo slowly, so dramatic each day. Little relief each day.
Yes this represents my lame, immune compromised body trying to fight off the evil invaders.
Yes my weak immune system is rallying. Yes I am getting better a little bit each day.
Yes all the congestion, coughing, etc, is clearing out all the cooties. Slowly.
Too slowly.
Yes I know the biological process of a headcold, of this gross sinus infection.
No I don't have patience for the process
I've run out of patience
Cancer treatments and side effects teach patience
But I am impatient.
I don't want to learn more patience.
Dang it, 3 weeks is a long time to feel continually sick. Just sick.
Dragging, blah, weak, tired, defeated, deflated, yucky, clogged, stuffed, drained and draining.
My ears have been so plugged for days and days, I feel like I have cotton stuffed in them, or I'm under water.

Yes I am very very very fortunate I can battle on my own.
Without antibiotics, with just OTC help
Without getting seriously ill with pneumonia and winding up in the hospital.
Yes I should be proud of my feeble body for rallying as it does, and healing as it does, albeit sloooow.
Yes I am so aware of those that cannot battle on their own
So aware most myeloma patients, chemo patients wind up in the hospital with pneumonia in cases like this.
I am aware how bad "it could be", and No, I will never forget my month long hospitalization for my stem cell transplant process and recovery.
I am very fortunate I haven't been back in the hospital since July 2010.
Yes I am very very aware of how much suffering there is, and how bad it could be for me...

Kathy Boyer, Artist-Photographer Extraordinaire 

But I'm really really really frustrated with MY life.
What life?
Am I living or just existing?
So sick of being sick.
So sick of trying to avoid being sick, then getting sick!
So sick of postponing my life.
So sick of seeing my life go by, day by day, just waiting.
Waiting to be well to live life
Hoping for a break
Hoping to feel well enough to catch a break, to have a bit of fun
Hoping, waiting, wondering, not in control.

Oh, shut up Julie, you have a "great" life.
You're alive!
You've beaten Myeloma for 8 years now.
You have so many things to be thankful and grateful for
Yes Yes Yes
I know I know I know
So many many many things to be grateful for and I am...
I truly am...


But dang it, I am so frustrated that my life was stolen from me 8 years ago, and it will be stolen from me forever, as my reality is I have a severely weakened immune system, I will never ever be normal, I cannot engage in normal activities. I get sick when exposed to any germs and cooties. Always. I have no immune system due to Myeloma's ravages and chemo treatment ravages. No one in my family is currently sick. Nor did they get this illness. We were all together at the time I believe I was exposed. They all have normal immune systems. They are healthy, I am not. I'm the only one who got sick. I tried to have a bit of carefree fun, and I paid dearly for it.

I have cancer, I am sick, I will be sick forever...

I'm so sad about MY life-
So sorry to be so honest, but I am so sad about what has happened to me.
My plans, my future ideas and goals... what a joke...
If one is not well, one cannot do what they plan, wish, dream about.
I really didn't have "big" plans, just a few little adventures
If I'm always sick, or feeling sick, or avoiding being sick, am I living life?

Yes I am beyond grateful to just be alive. Yes I am.
But why so much suffering, so often.

My ears have been so plugged. I feel like I'm living under water.
So much crud, gunk and phlem... but getting better each day...slowly, so slow, too slow
The cough isn't quite as deep any more
Thankfully, it wasn't ever bronchitis-deep or in my chest, just a relentless cough, my body trying to rid itself of the cooties. Thank you body for trying so hard. So tired from it all.

I am so sad for what has happened to MY life.
I could list all my frustrations, but I would sound so shallow.
I have so much to live for, and I do everyday.
But sickness, feeling sick, or debilitating fatigue, sabotages me.
I just can't get over how limited my life has become.
How illness, side effects, treatments, then more side effects own, rule my life.
My stolen life.

When I am "well", I still only have a day or so to "play"-
I'm either experiencing side effects or planning for them, from the medication crash.
Can you imagine planning each week, when you'll be "sick", when you might be able to be well?
Yes, illness is MY life, and I still cannot believe it.
Yes it can always be worse, and it is for so many.
The suffering in the world is overwhelming.
The suffering from illness is beyond anything I ever understood.
We empathize when we understand-
And I now understand how debilitating illness is.
I wish I didn't...
I wish I didn't have to learn all these lessons.
I wish I understood why this happened to me and others.
I wish for everyone's health, happiness, healing, no pain.
Guess I'm wishing for a non reality.
Life is challenges, pain, struggles, infinite mountains to surmount.
Honestly, I don't want any more mountains to climb.
I don't need any more challenges.
I don't want to be tested any more.
But I will be, forever and ever and ever, thank you Myeloma.
I just want peace, serenity, calm, beauty, laughs and lightness.
I just want to be.
To breathe calmly, to breathe in nature and beauty, and to laugh at, and with life.
I just want to own my own life again, but that's not possible.
Myeloma owns me and my body, forever...

I'll get through this, I will, I always do.
Thanks for reading if you got this far.
May your life be what you want it to be.
May you find laughter, happiness, peace, joy, and most of all... health.

Grateful, Thankful, Beautiful Life

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

We said GoodBye to beautiful Charlene this past week. Her body failed her. She very quickly developed Kidney failure, lost a ton a weight, had a hard time eating, became dehydrated, so fast, so sad. But she had 3 good years with us. I rescued her from the Shelter March 2015, after her family turned her in, not wanting her any longer. She was around 12 then. Such a sweet purrrfect kitty. Our hearts are broken, but she had 3 extra years of life. My Betta fish died a week ago, and a few weeks prior, one of my Triplet rescue sparrows also passed. Our bodies betray us, but life will always march forward. Always... 



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


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4 comments:

  1. OtterApril 28, 2018

    Julie, I am sorry that you have been so sick! That has to be rough, being sick for so long. It saps my will to go on when I get really ill like that. I hope you feel better soon! I have been fortunate so far in that I really don't get sick very often. I don't know what the future will hold, so right now I am getting out there and doing everything that I can. Going hiking and going to concerts. I am going to Canada for an 8 day backpacking trip with my oldest son at the beginning of June. I will be off Pomalyst for 2 weeks instead of 1, so that my immune system isn't as compromised. So far, the Pomalyst has made my M-spike stable at .3, but my kappa light chains are going up. 15 something last lab, and 23 something at my labs last week. I am worried, but try to just live and not think about it. Anyway, I hope you get well soon, and I hope that they find a way to cure this horrible disease! Hopefully during our lifetimes!

    ReplyDelete
    Replies
    1. JulieMay 01, 2018

      Hi Scott, I'm so happy to read your update and that you are able to get out and about and have FUN! From your stats, we have a different type of myeloma, and from what I've experienced and read, my IgA type really sabotages the immune system, whereas your Light Chain type isn't quite as affected, thank goodness for you!! Most other MM-ers I know with Light Chain MM, don't have the compromised immune system and low low WBCs like me :(( So happy you and your son will be travelling to Canada. What part? Back back back in the day I used to backpack also. Did some packing trips in Yosemite and Hawaii. Ahhh, the good ol days! Glad Pom keeps your MM stable! Thanks for checking in and updating me, and thankfully today, I am finally better. I think I'll write a quick update post. Stay well, and keep adventuring!!!

      Delete
  2. ronApril 29, 2018

    Julie,Sorry you have not been feeling well!I can understand with your love of the outdoors how frustrating this must be for you.I was encouraged
    though that your system is fighting illness so well.
    A real compliment to your survivor mentality.Keep
    your smile and your positive spirit as I know you will.
    Ron

    ReplyDelete
    Replies
    1. JulieMay 01, 2018

      Hi Ron, thanks for checking in! Yes, being sick is terribly frustrating for me, as you said, because I love being outside and active. So very frustrating for me to be a sickie, in so many ways. But today, I am finally seeing a change, and I'm on the upswing :)) Hoping you're out and about playing with your grandkids, golfing and enjoying life!

      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.