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Monday, August 1, 2016

Frustrated Feverish Rant- Why Myeloma Why

I never did finish my previous post, as I got sick AGAIN! Again with a stupid FEVER BUG! Sick since late Wednesday afternoon, when my chemo nurses took my pre chemo temp and reported I had a “little fever” of 98.9. That was mid Wednesday, and it’s late Sunday now and I still feel lousy and still have a fever. I feel lousy physically and mentally. This dumb annoying debilitating fever peaked as high as 101 (Friday I think). Yes, I know... I should have gone to the Dr, but I just felt so awful. I did eventually call and chat with my amazing oncology team, and we cancelled chemo. Here's the irony: while my body tries to heal from this fever bug, Myeloma surges forward. In trying to get "well", I get "sicker"! Seriously life, the absurdities!

Allow me to vent, my invisible friends. I really do appreciate “you” being out there… but please don’t feel sorry for me. I’ll get past this current funk. This is my reality, and the reality of so many with chronic illnesses.

I woke up this morning still feeling feverish and so frustrated. Frustrated I am so controlled by Myeloma and my sickly, immune compromised body. So frustrated and sad with all that is involved with having a “chronic illness”. So frustrated and bewildered that my body has failed me. Failed me for over 6, 7, 8 years. So frustrated that I am in the circumstances I am in, at such at “young” and vital time in my life. So frustrated and sad I can’t really live my life as I had “planned and worked so hard for. Why Life? Why did you do this to me? Since December 2009, I’ve been accepting, positive, optimistic, hopeful, grateful and a very cooperative patient. I’ve lived thinking each treatment will make a difference. A real difference, a BIG difference, not just a temporary difference. I really thought I’d be among that lucky percentage that left Myeloma in the rear view mirror. Dumb. I have an incurable cancer diagnosis, and dang it, I have to accept I will never be “better” and I will never be the Julie before Myeloma. 

Yet, I find it impossible to accept my circumstances.
  
I should be happy, but I’m feverish sad. I should be glad, but I’m feverish mad. I should be grateful I am able to still "be here", no matter what right. I am. Truly I am very grateful when I view my circumstances in “The Big Picture”. I am very grateful for all the reasons I should be, especially for still being here 6.7 years after a deadly cancer diagnosis. I know, I am one of the lucky ones who did have a successful stem cell transplant. (Which by the way, July 29th marked my 6th anniversary of being released from the hospital.) But that doesn’t lessen the extreme sadness, frustration and anger, yes anger, I have for you Myeloma. Why was my life edited at 50? Why am I doomed to suffer forever, until Myeloma finally takes me? Why Myeloma Why? I had so much more to accomplish and share with the world.

I’ve always been a “less is more” person. Living a simple life, helping humans and animals fulfilled me. All I wanted for my “golden years” was some carefree fun with family and friends, with nature and animals. Spontaneous living, embracing the world’s beauty. Just having fun. Laughing. I really didn’t need much to fulfill my “retirement” years, as I felt I had accomplished quite a bit in my life already. I just wanted to continue to help humans and animals and be carefree. What throws me over the edge when I’m feverish and sick, is the reality of my lack of ability to just live life. To just get up and go and do. Not big things. Little things, normal things. Things everyone takes for granted until they’re sick.

I just want to feel well enough to spontaneously run errands, spontaneously go places, spontaneously do normal mundane things and "feel normal" even though I am not. I'm so so tired of worrying about germs and cross contamination all the time. All the precautions I take don't seem to matter anyway. I want to be able to just get up and go. Meet up. Laugh. Play. I want to have energy. I want to feel good, I want to play, and say “yes” to family and friends when they want to meet up. I just want some semblance of my life back. I truly can’t believe how “abnormal” my life has become. I want ownership of my body and life… but that’s an impossible illusion now.  I'm so sad... feverish sad.

When I’m feverish, there’s a lot I don’t like about me and my life:
I don’t like how awful my body feels
I don’t like that I feel sick the majority of my days, weeks, months
I don’t like how controlled I am by cancer and treatments and side effects
I don’t like how cancer and side effects have stolen my spontaneity
I don't like how cancer has stolen my silliness and playfulness
Cancer makes you more serious, and I don't like that
I don’t like what I see when I look in the mirror. Who is this ragged unhealthy person looking back at me
I don’t like “the new normal”. I’m tired of constantly adapting to yuckiness.
I don’t like how everyday normalcy has been stolen from me.
Why, Body, Why did you let me down, take me down, sabotage my life?

When I’m sick and feverish, I lose hope. I wonder what the “purpose” to all this is anymore. Yes, I’m living and so very grateful for that… but I’m really not really living. To others maybe yes, but to my standard, no. My days are all about just trying to feel ok to accomplish a thing or two. I often wonder what would happen if I stopped treatments? How long would it take for Myeloma to take over? How long would it be until I really felt really cancer-sick. How long would it be until my demise?
Maybe I should stop looking at social media and all the reminders of what I am missing. 
Stop watching Travel shows, HGTV, Nat Geo, and “Arial America”. 
Maybe stop looking at anything that makes me miss my previous life, and my lost future. 

Don’t get me wrong, I am thrilled for everyone else’s happiness, travels, events, successes and spontaneous adventures, but more and more, I am slammed with the reality of my forever limitations. I hate limitations. I never accepted my limitations. I fought limitations in my other life. I can’t fight now. There’s no point. Myeloma is what Myeloma is. It’s chronic, disabling and forever and ever and ever. 

I can’t “JUST DO” anymore, and that’s what really frustrates me. I just want to be “normal” and do normal little daily things. Do life spontaneously! Just get up and go. Think a thought, go do it. Meet up. Accept invitations. Play. Work. Help others. See others. Have energy. No planning, no worrying about the “what if”. “Just go do things” you say. No, I really can’t: 2 days a week I do crazy making steroids and Kyprolis chemo lab treatments. Those days are shot time-wise. I can't ever predict how this will affect me, so I can’t plan much those days. Maybe eating and and a minimal visit with family and animals. 

The next day… the crash can come any time. Fast or delayed onset. Totally unpredictable, so I can’t plan anything day 3. Day 4, 5, ugh, here it comes… the evil crash… the Dex steroids and chemo yuck crash. The fatigue, the GI issues, the mental fuzziness exhaustion overload from trying to be strong. The physical achiness. The dizziness. The neuropathy. The swelling. The crawling skin. The headaches. Nausea. The wind is gone from my pitiful shredded sails. The fatigue is totally debilitating. 

Day 6, 7 I begin to rebound a bit. I’m teased with a bit of normalcy, but still have all of the above, so I can’t JUST GO and DO THINGS. And then, repeat. Repeat for 3 weeks in row. You ask, "what about your chemo break week"? Well by that point my body is so worn down, there’s not much left til mid-week, and then, everything is still unpredictable. My energy is zapped. I’m still achy, my GI system still surprises me with ridiculous surprises at the most inopportune time. The fatigue is just so incredibly disabling. But I push forward. That’s just me. Push forward. Accept. Don’t complain. Appreciate. Be grateful. Glass half full always. It can always be worse I tell myself 24/7. Look at all the world’s suffering… shut up and put up Julie. And when I do throw caution to the wind and push forward, trying to be normal… I GET SICK!!! I get sick even with all my precautions and carefulness. I hate you Myeloma.

So here I am sick for the 3rd time this year thank you stupid compromised immune system. Guess this is the IgA Myeloma curse.  I know, I know… my circumstances could be sooooooooooooooo much worse. I shouldn’t even post this rant. Makes me sound ungrateful for my successful treatments and length of survival, not to mention in comparison to so many, that suffer in so many ways, that don’t have what I have. Shut up Julie. Just shut up! Shut up and torture yourself with what you're missing out on. Shut up and just be... just be grateful for the life you have...

I just want to swim in turquoise waters

And sun like an iguana on beautiful sandy beaches

And ride through green and golden pastures

And dive into a refreshing pool

*************

On to the numbers reality game, recapping the month to month of my important Myeloma Markers, with my recent results last:

(My type of Myeloma "trends" via my IgA and M Protein levels)
(Immunoglobulins explanation)
   
(Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230)

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808         232         < 17
6/23/16               1140        267         < 17
7/21/16               1180        247         < 17
                           Yep! Up it went...

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 ... Zero

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT: 
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That's a BIG upward Trend in just one month!
June = 1.06
July =  1.01 WhooHoo.. down .05 lol

WBCs, RBCs, etc etc in the low ranges... so of course I can't fight off all the cooties out there. 

Sorry for my pitiful self absorbed whinny rant. I really do have so very much to be grateful for and I am. I truly am so very appreciative for all the years my medical team and I have outsmarted Myeloma. I am deeply grateful for every day, week, month, year I have survived when I should not have. Fevers just make me so sad and frustrated and that's what I wrote. 

Next post I will share my new hair and our sweet new little shelter rescue. 

May your lives be filled with amazing accomplishments and adventures. If you are a well person, live every day never taking your health for granted. If you have Myeloma or another awful diagnosis, I wish you strength to carry on and enjoy what's important to you. I will. I do. And I will get better. 


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

 

12 comments:

  1. I have come to the conclusion that cancer and its treatments when as harsh as often in the case with MM, has somewhat the effect like PTSD our vets deal with. A lot of innocence is lost. Only those that have traveled that road have any knowledge of the battle weary affects. Gives me a really soft spot in my heart for vets.
    Vent away, that is what we are here for. Read your posts faithfully. And yes, love all your animal pictures!

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    1. Hi Anon, yes I agree, about PTSD!! We are so "traumatized" by so much from the cancer Dx and continual treatments with MM. But as miserable as I often feel, my heart goes out to our Veterans who have experienced so much awfulness in the world. I feel my circumstances pale in comparison. I can't imagine what they have been thru, and I don't think I would have the courage they do, to do what they do. It is truly amazing what all of us can handle. Great comment! Thanks for stopping by and letting me know you read and appreciate my posts and animal pics :)) Means a lot to know!

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  2. Hi Julie,
    I just discover your blog after reading about you in Health Monitor's Living With Multiple Myeloma. I hope you are feeling better since your last post. I can relate to so much of what you said. I was diagnosed in 2012 and since 2014 I am non secretory so labs don't reflect myeloma activity. I was just diagnosed with a second extra medullary tumor in my intestine. This disease sucks! My myeloma activity is best tracked by PET scans which I have to fight my insurance company to approve.

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    1. Hi Anon, thank you so much for your comment! I had no idea the article from HealthMonitor was finally published. They interviewed me waaaaay back in Nov 2015, and I never said anything as I didn't know if it would actually be published. Thank you so much for alerting me so I could contact them for copies! Sorry to hear about your complicated version of MM. Crazy how many variations of this stupid disease there are. So sorry about your tumor, ugh that must be scary. Please keep me posted on your status, or if you have a blog, let me know! I wish you luck with all your treatments, and stay strong, and keep fighting those dang insurance companies! Thank you so much for commenting. Really means a lot to me! :))

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  3. Julie,
    Sorry you're not feeling well and hope you're better soon. I know when I don't feel well everything is colored gray. it is a strange trip, this MM journey. I think you've done amazing and hang in there.

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    1. Hi Christina, thanks for commenting. Yes gray! Good analogy. Fevers just zap the life out of me :(( and siphon out all my positivity. Thanks for appreciating my journey, but you're ahead of me by several years, so you are the stronger warrior! Love all your posts on your blog. And by the way, read the first comment above. Our magazine article is out! I saw the picture of you and your hubby!!! Email me and I'll send you the link! xoxo

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  4. I can certainly understand why you are ranting. Let it out! MM sucks! I am only two years down the road and, fortunately, doing pretty well, however, I know it won't last indefinitely, and it scares the crap out of me. All I can say to you is that I think you are very brave and most of the time your posts are uplifting and positive. You are certainly entitled to complain. I am hoping that you are beginning to recover by now. Hang in there, Julie!

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    1. Hi Ellen! Thanks for checking in and commenting. Yes, fevers suck the life out of me and also my usual positivity :(( I am sooooo happy to read you are doing well, and I hope that continues indefinitely for you!!! After my SCT and while in Remission (but still on maintenance Revlimid), I felt pretty good too. I wish I had never stopped the maint Rev... o well. So happy for your treatment success, and keep it up forever!!! Thanks for checking in, and your kind words of support! xoxo

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  5. Hey Julie!
    Just wanted to let you know that your blog is wonderful and even in a rant it's so well written! I work for a company called WEGO Health and it's my job to find different advocates and read their blogs and learn about their lives. Thank you so much for sharing!

    Keep telling your story! It's so important! I've been a patient advocate for over 10 years now myself!

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    1. Hi Jackie, thank you so much for stopping by and letting me know you appreciate my musings and rants :)) I know of WEGO, as I have answered surveys and studies previously, I believe with WEGO. Thank you for enjoying my writing, even when it's a feverish pissy rant :)) Thank you Jackie!

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  6. Thank you for posting this. I lost my beloved husband to MM 2 years ago. He was the love of my life, together 40 years since the age of 15. I can relate to all of this, even though I was the caretaker and not the person with MM. It is a debilitating disease that takes over one's life. You are not living, just existing and trying to get through the day. I remember walking out dog through the neighborhood quickly (as I had to get home to help my husband, I hated leaving him alone even for a minute) and smelling people's suppers cooking. We hadn't had dinner together at a table in so long (he had trouble swallowing once his ribs and spine broke and collapsed down because of the disease.) I just wanted to be normal, do normal things that we all take for granted until we lose them. We could not even sleep in a bed together the last 2 years as he was so uncomfortable he had to sleep in a recliner, constantly shifting positions and changing padding to get comfortable. Whenever I became frustrated I told myself "if I am frustrated, how must he feel?". After he passed I felt guilty walking the dog fast as when my husband was sick he had a medical scooter and we had to walk slow as the bumps in the road jarred him and caused pain. Looking back on this I don't know how he did it because I don't know how I did it. My husband was amazing and just wanted to live so bad, I'm not sure I could have done all that he did. If people are not going through this, they just don't understand it. I didn't until I went through it with him. I have a whole new outlook on what sick people are going through. I am happy you wrote this blog. It is honest and raw but people with MM need to hear it. It is okay to say "you know what? This sucks and I need help". You take care. Barbara

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    1. Hi Barbara, thank you so much for your heartfelt comment. Means so much to me that you took the time to share your and your husband's story. My heart aches for what he went thru as a patient, and you his loving caregiver. I am so very sorry he suffered as he did. Did he have IgG myeloma? From what I have read and heard from other myeloma patients, IgG myeloma really attacks the bones. Sounds like your beloved husband suffered a lot with stupid myeloma and it pisses me off for him and you and all of us! Thank you so much for commenting and sharing your story Barbara. What you wrote is beautiful, and I am honored you read my blog and enjoy my posts, and you appreciate my "raw" and honest writing. Thank you very much Barbara, and take care of yourself. It's ok to move on. I'm sure your husband would want that. Walk your dog fast and happily! Check back and let me know how you are doing! xoxo

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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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.