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Wednesday, April 6, 2016

When Illness Becomes a Lifestyle and Other Ridiculous News

This Life!
Seriously, this life is so full of extremities. On so many levels. For everyone, of course, in their own way. I used to be that person that assisted others with sorting out their dramas, tramas and life's challenging circumstances. Now, I am the one with the drama, and I don't like it. I've never felt so "bi-polar" in all of my life. I can go from feeling Great to Horrible in the same day, within minutes. Sometimes I feel I can accurately predict my physical circumstances, then poof, something happens and in no time, my life is upside down. I've always looked for the good in the bad, and been aware of that fine line between humor and tragedy, but c'mon life, enough is enough already. Yes, Illness has become my Lifestyle...


Before cancer, my life hummed along. "Normal" extremities and challenges daily, but there was a sense of natural flow, of predictability as the days flowed into weeks, weeks into months, months into years. Now, I have learned to live life moment to moment, day to day, week to week, month to month, as so little is predictable, as it was before cancer. I truly hate to accept this concept, but cancer really does own me and my life. Living with Myeloma, treating Myeloma, dealing with Myeloma and side effects really does own my life. It has for over 6 years. I must accept this.

With my current Kyprolis+Dex steroid treatment regimen on Monday Tuesday, Monday Tuesday, Monday Tuesday (that's 2days per week, 3weeks per month) my "functional" days are limited. I surprisingly feel "ok" on treatment days with the delightful steroid prop up, but I don't do much else on chemo lab days. Predictably, thank you Dex steroids, I don't get much sleep Mon and Tues nights, and often into Wed night, so by the time Thursday comes around, I'm a tired zombie. And predictably, I begin to feel GI-yucky later on Wed, into Thurs and often Fri. (Posting last minute now because a terrible night of GI "stuff"... ugh!) I can often look forward to being "somewhat ok" by Sat and Sun. Which brings me to my point of reference above, how myeloma and side effects own me and Illness becomes a Lifestyle.

Just when I think I might be ok, and I think I can venture out of the house for something social, boom! my plan backfires, lol literally. Late March was my son's 30th birthday. A really big deal on so many levels. Big because my baby boy is 30, and we don't know where the years went, but especially since he's a cancer survivor too (see my January 2012 posts) and we are all here to celebrate 2016! By Friday I thought I would be ok for a family dinner date, as by Friday I usually look forward to having an appetite and being able to eat. Long story short, out of  NO where, thank you unpredictable side effects, I barely made it home to my bathroom. You have no idea! Seriously myeloma, give me a flippin break! We had a great time, ate up a storm, laughed and reminisced and I really thought I was ok. We weren't close to home. 40-50 minutes away. I was over confident eating as I did. Boom! OMG, Get Me Home FAST! I just can't believe how my GI system sabotages and challenges me whenever I try to have a moment of fun. Myeloma and side effects, you do own me.


That was late March, and between then and now, I can't even explain the ups and downs in my physiological life. It's a terrible way to live, not knowing how you will feel each day, moment to moment, event to event. I look back over the years, and how I tricked myself into false normalcy after my July 2010 stem cell transplant and recovery. Yes I had remission for a few years, but most of that time I was on maintenance chemo (Revlimid). I think back how I tried to engage in "normal" life activities, go back to work, socialize, etc, but I was only fooling myself, dragging myself to things, not eating before (or during) events, so I wouldn't have GI disasters, etc. Well 6 years of living with and treating myeloma has certainly taken it's toll on me in so many ways. And the FATIGUE is just so disabling. I used to be a ball of fire, go go go, do do do. Now, one event a day, if I'm lucky, is all I can handle.


Next case in point of how myeloma and side effects own me, my life, and how Illness Becomes a Lifestyle:
Out of  NO where this past Sunday night, while doing nothing out of the ordinary, (just reading articles online), all of a sudden my heart begins to "malfunction". You know that sound and feeling when you turn on a water hose that hasn't been used for a while, and the water sputters and goes "blub blub" through the hose? Well for what was (fortunately) only seconds, or under a minute, my heart was jumping and sputtering, and I could feel that "blub blub" feeling, as it was doing some sort of somersaults in my chest to correct the flow. I've had "fluttering" before, but this was really jumpy with that crazy "blub, blub". It felt like my little heart was flip flopping around, doing crazy gymnastics, and then... all of a sudden, I started to feel faint and light headed. For a moment there, I thought, ok Julie, This Is "IT". This is how you're going out. I thought I was going to faint, and I had this weird eerie feeling of "that bright light" taking me away. But as suddenly as all this happened, my little heart and valves flipped around properly, and I was ok.


I sat there stunned, and tried to take calm deep breaths, ensuring my physiology was working properly. See, I'm not one to panic. As a matter of fact, I under-panic. My medical experiences are such "out of body" experiences, where I'm fully in the moment experiencing it, but watching from the outside, as I just can't believe whatever is happening to me, is happening to me, so I never panic.

I quickly started to research this event online and also reread Kyprolis side effect warnings and knew I should call my medical facility, or go to ER to be checked out, but heck it was 10:30/11:00 at night and I couldn't stand the idea of the ER (germy) chaos. So I continued to deep breathe, monitor my heart rhythms, and hope for the best, thinking ok, I have a chemo appointment tomorrow, I'll just have them check me out there, and go on with treatment, etc. I woke Jim to let him know of this, and he of course was stunned and worried, but I was firm that I did not want to go to the hospital. So I went to bed, and hoped to wake up in the morning...

I did indeed wake up! Whew! So I gathered my senses about me, and called my oncology office. They of course were not happy I waited so long to consult, and immediately cancelled my Kyprolis treatment and insisted I go to ER to be checked. Ugh! No ER! So I called "Urgent Care" and was able to get an appointment for 1:30. Long story short, I was thoroughly checked, had an EKG and fit with a 24 hour heart monitor. The EKG fortunately did not show anything dramatic, and we'll see what the 24 monitoring shows. I'm rescheduled for Kyprolis for next Monday, so back to my "regular" schedule. Thank you body for all your unwanted surprises and making me constantly feel so ABNORMAL.

I took a cool "selfie" with all my wires, changed it up with an artsy app, and would love to post it here, but that would be TMI, so above is what the 24 home monitor rigging looks like.

Seriously life, can you please give me a break! I used to love spontaneity, and interesting fun challenges in my life, but this is getting ridiculous! Welcome to when Illness Becomes a Lifestyle.

And one more story: I had a crazy out of body falling experience several days before my heart issue (completely unrelated). I was admiring our beautiful roses and taking pictures of their vibrant colors, when suddenly I lost my balance and footing! I'm not terribly athletic, but I've always been very sure-footed and not prone to falling, so when I began to fall, I was shocked I was actually falling. I never fall! As I'm going down, I'm laughing inside, saying this really cannot be, this can't be happening, noooo... I'm tripping and falling... into a beautiful yellow rose bush, that has EXTRA HUGE THORNS. I said, NOPE, NO WAY, I'm not going down like that! I managed to become like a pole vaulter and magically propel myself forward a bit, enough to miss the giant thorns, only to see the edge of the brick planter awaiting my forehead, arms and other body parts. I again magically propelled myself forward, like an expert pole vaulter, and managed to evade the thorns and bricks, and landed splat! on the lawn, phone securely in hand, undamaged, with awesome pictures of our roses! It was the weirdest slow motion event ever, with multi events within the event! I could have been really hurt, but I managed to somehow evade disaster. I'm too aware that my bones are probably not the strongest due to myeloma's damage, and a fall could be life changing, and not in a good way. Why life? Really! Why all these little constant tests and challenges in my life? I just shake my head and laugh...

Bricks! Thorns! Disaster averted!

 See those huge thorns hiding there!
The colors this year are stunning!
My pole vaulting assistants

So Velvety!
Stunning colors and beautifully scented too!
And so...
From a treatment perspective, being back on Dex steroids is proving it's advantages. I am happy to report that my labs have improved from Feb and it looks like Kyprolis+Dex is my magic elixir. No doubt I am still immune compromised and that limits me in so many ways, but I am so fortunate this combination is munching up and suppressing those evil myeloma cells.

Here's my recent stats for perspective:
(I'm IgA myeloma)
Immunoglobulins
Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230

Date                      IgA        IgG         IgM

10/18/15              1890       240         < 18
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

M Protein (Normal = 0)
July = 1.26
Aug = 1.01
Sep = 1.37
Oct =  1.58
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
Mar = "Abnormal", but no M-Protein number mentioned

So how's that for a "quick fix". Although Dexamethasone makes me crazy on so many levels (I feel so yucky right now), and Kyprolis may be affecting my heart, and other organs, I'll "suffer the consequences" as it's said, if this combination keeps my myeloma numbers down. To be clear, as so many wish for "remission" for me, I don't live for that anymore. I learned my lesson from 2010,  2011, 2012, 2013 that I WILL ALWAYS BE IN TREATMENT. My "type" of myeloma is unrelenting, "aggressive" and "high risk" (as I was told at diagnosis), and it will never ever disappear. Myeloma is chronic, incurable and forever. Treatment is forever. Case closed. I accept that. Bring on the meds to extend my life.

Final story: As you've figured out by now, I love animals. My "retirement dream" was to continue to help people and rescue animals. It's a beautiful reciprocity. Animals heal hurting humans, as the humans are healing the hurt animals.
Myeloma ruined my plan, and I have accepted that, so I help others, help others. Recently, I sent a personal comment to one of my favorite horse rescues, HiCaliber . I told the story of how when I'm in the chemo lab 2x per week, 3 weeks per month, I read their heart wrenching rescue stories, "live" on Tuesdays, when they're at auction. I told them how I laugh, cry, giggle, get mad, etc, at all their stories. I told them about my incurable cancer diagnosis. I told them about being in the chemo lab. I told them about all the other patients in the chemo lab. I told them about my nurses telling me to stop jiggling my hand IV, as I scroll non-stop through their posts. I told them they are doing my "retirement dream". I told them how they uplift me, inspire me and entertain me during my chemo infusions. I told them how much I love and appreciate what they all do to save lives, daily, weekly. I told them how they help me get through my chemo infusions. I told them I donate when I can.

I received a sweet return message letting me know they read my comment and they wanted to name one of their rescues in tribute to me. I was so touched and loved their idea. I asked them to choose a "broken", hurt, injured, sick horse that needed help, like me, and name that horse after me. They wrote back, telling me they had "that" horse, still unnamed. They selected this beautiful mare, who had been tossed away at the recent auction. No one knows these horse's backstory. Most don't come with registration papers or history. Most are anonymously thrown away. There's little chance of finding out who they are, what happened to them and why their humans betrayed them, threw them away at auction, hurt, injured, sick, and without hope. Now, this lucky mare has hope, thanks to HiCaliber.

Meet "Jewel(s)"

Isn't she a Jewel! Tossed out sick and injured. Almost loaded onto the "wrong trailer", if it wasn't for all the amazing people at HiCaliber, saving these precious lives! We named her Jewel(s), as "Jules", "Jewels" is my nickname.

But wait... there's more. You've read how I am fascinated with my cancer numbers, and always seem to have uncanny connections with numbers. Well get this: it turns out Jewel is a registered Thoroughbred, and her registration number contains my birth day, 22. She's also 22 this year, as she was born in 1994. She was rescued by HiCalibur on March 22! And they contacted me about naming her on my son's recent birthday. And finally, completely unplanned, I took my March myeloma marker blood tests on... yes you guessed... March 22! How's that for symbolic numbers!

But wait... there's more: Take a look below. She's s an almost exact twin of my beloved 2nd horse, Skye. He was with me from 1980 until he passed, get this, around the time Jewel was born! They both are Bay in coloring, have a little white star on their foreheads, and one little white hock-sock. Seriously, how's that for uncanny "coincidences"? And not to forget, she was selected at random for me to name. None of us knew any of these remarkable "coincidences" beforehand!

Here I am, 1981 with Skye. He and Jewel, so similar! wow, just wow!
~ ~ ~ ~ ~



So that's my story.
Well not really. I could write for days with so many things going on in my life! Cancer, Myeloma, Treatments, Side Effects, Physiological stuff, Psychological stuff, Family, Career, Decisions, Disability, Retirement, What to Do, Where to Go, How to Adjust, Why is all this is what it is..

Oh well, keeping it positive, I'm naming my house:  
"Myeloma Mountain Animal Rescue"

Hopefully my Cardiology report will be insignificant and I can carry on, as is. I am weary of decisions and focusing on cancer, chemo, treatments, etc. Most of all, I am weary how Myeloma has changed my life, my focus, my dreams, my activities, my sense of self, and my daily functioning. "Illness Does Become a Lifestyle", accept it or not, it will always be there, in my face or lurking in the background. That, is my reality, and I choose to live in reality.

My life is still amazing, and I am grateful  for every breath I can still take, every view I still see, and for everyone in my life that impacts me, and how I still impact them.


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




6 comments:

  1. Julie,You are amazing to stay so positive with all you
    have gone through.But new drugs are coming so there is hope.Trust that the heart monitor results were negative.The pictures were great.
    Ron

    ReplyDelete
  2. Thank you Ron for all your support and uplifting comments. You are a loyal blog reader and commenter, and I really appreciate you following my status! I've had some interesting interviews to tell you about. What a funny journey life is. Hope all is great with you and your family Ron.

    ReplyDelete
  3. Hi Julie! Your roses are stunning, and I am so happy you got those amazing photos without causing yourself bodily harm! Both our sons turned 30 in March...can you believe we have children that old, and that we both have children that are cancer survivors as well? We could really enjoy spending time together if we didn't live on different coasts!! How many animals do you have at your ranch? I love to live vicariously through friends that enjoy animals as much as I do! So happy that Krypolis is working for you, just wish your poor body didn't experience so many awful side effects. I cannot imagine how discouraging that is. I am thankful you keep writing to share your story, and pray you can stay positive in the face of exciting advances with MM treatments. We attended an IMF workshop yesterday, and love the direction the research is heading, keeping us hopeful for a cure! Happy spring and keep those photos coming!

    ReplyDelete
    Replies
    1. Hi Linda, yes I am amazed at our life circumstance similarities! This world, this life just never ceases to amaze me :)) Blessed to have our "blogosphere" friendship we do. And I think about that all the time, how our son's are the same age, and one of our children each suddenly got cancer, and EZ and I with MM. Crazy stuff!! Yes, we would be for sure hanging out together sharing so much together! My hubby Jim has always had a amazing "green thumb" and our yard was lush after all the rain last month... drying out now tho :(( Send me an email to Missy.Myeloma9@gmail.com so we can chat more!! Love and hugs to you and Ernie! xoxo

      Delete
  4. Hi, my husband wS diagnosed with mm in Dec 2009. I just read your April 2016 post. It is his/our life! It is weird to read from someone else the exact same experiences you live with also. My heart goes out to you. Life before cancer and life after. 2 different things. My husband was/is so happy go lucky, but exhausted over all now. Worn out. Thank you for your blog.

    ReplyDelete
    Replies
    1. Hi Cathy, I hope you check back and see my comment! I just saw your post and really appreciate you letting me know you enjoy my blog. What you wrote is how I feel when I read other MM blogs too. It's amazing the toll it takes on us, yet the similarities of all of us. And amazing, that he and I were Dx at the same time! I try to stay positive and optimistic like my ol self, but some days are just a no-helium-drag. But we are here 6 years later, and that's an amazing feat, right?! Hoping he is feeling well, and again, thank you so much Cathy for leaving me a comment! Write to me at Missy.Myeloma9@gmail.com so you can tell me more about his story! Thank you! :))

      Delete

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.