Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Saturday, February 6, 2016

Results, Adventures, Challenges, Grateful

Hello February!


So every time I finish writing a blog, I think Ok, that sums it up, I sure won't have much to say when it comes time for the next on the "6's" date to post! Well, I'm wrong on that! So much seems to happen between my 6's. Since my last post, I've found out the results to my January 4, 2016 Bone Marrow Biopsy (see below). I've had several occasions/invitations to share my myeloma story (one big event I'm keeping secret for now :) ... And more and more, (sadly) I am FORCED to recognize and accept how my cancer treatments and medical status has completely changed my life, and how my situation is preventing me from "functioning" anywhere near how I used to. So I made a phone call..

Saddle up. Here we go with my updates.

February brings the start of a new college semester. "Normally" I would have been involved in so many college related events and activities my head would be spinning. But nope, not now. I haven't set foot on campus since late October 2015. This is really huge for me and it's so weird for me trying to accept this "not going into my office" any time soon, or (maybe) ever again concept. Ouch! That's hard to write. Being a college counselor has been my whole life, beyond my kids and family life. The reality of my cancer side effects and weekly IV chemo treatments push me to accept my "forever" status. I see why those diagnosed with cancer eventually must opt for disability or retirement. I've fought this concept for 6 years. It's such a challenging concept for me, but a concept I must now consider... Ouch.
So I made a phone call...

Life's forks in everyone's road fascinates me. Always has. The choices, decisions, outcomes and adventures are never ending for any of us. Ever. Often exciting and rewarding. Or sadly tragic and too challenging. I used to present this to my students and classes: "If we were all in group therapy together and asked to write down our "issues" on a piece of paper, fold it up, toss it into a basket, then swirl the basket around, then we'd all have the choice to pick a random "issue" out, or pick out our own... Which Would You Pick?!" 
I pose this question to people regarding my cancer situation, as they just can't wrap their mind around living with an incurable cancer diagnosis. So I ask them to reflect on their own life's challenges, or those of others they know. Would they trade issues? Keep their own? Would I trade cancer for their life challenges? It's all so relative and truly, it's all in what we get used to and learn to adapt to. I've had a really hard time accepting my cancer diagnosis and status. I still think it will "magically" change.

Yes, I am always thinking about what has happened to me and why, and how come, and no fair, and shheesshh can I give "it" back. But if given the "choice, would I "trade" my circumstances for another's tragedy? Would you? Could you handle mine, and me, yours? Crazy how we can "get used" to our tragedies and challenges, and "learn" to adapt, cope, accept and move forward. Strange how I am overwhelmed by other's medical situations, but mine, yep it's mine, so one foot in front of the other, every hour, every day, every month. Pushing forward always. Being the optimist I have always been, I forever seek the positive in the negative, always looking for the "silver lining", for "the good" in "the bad".  So I can't help but be humored at the many "good" things and interesting "adventures" that have come out my diagnosis and treatments... Case in point:


As you know from my previous posts, Kyprolis is currently my "elixir" and best friend, gobbling up myeloma and giving me renewed hope for additional longevity. Through a special family friend, I was introduced to PR staff at Amgen. They kindly were interested in hearing my myeloma story and I was of course happy to share and give my endless thanks. My cancer journey IS fascinating. NOT because it's MY story, but because of WHAT so "randomly" happened to an otherwise healthy body, and how all my excellent medical care and treatments SAVED A LIFE! As awful and deadly as myeloma is, cancer is mysterious and fascinating. Why it happens, how it happens, where it happens, to whom it happens. So what a wonderful opportunity it was to be invited to share how much I appreciate all the brilliant medical pharmaceutical researchers, scientists, developers, as well as the entire Amgen staff that helped create and produce the life saving "potion" that is currently saving my life, and battling myeloma back!

I only had a tiny window of opportunity in terms of WHEN I could "safely" get on the freeway for the drive out there, and it happened to be a beautiful day for a drive. I felt so fortunate to be able to do what I was doing on so many different levels! Here I am, 6 years into my myeloma diagnosis, having been through initial chemo treatments, a Stem Cell Transplant, remission with maintenance meds for a few years, and now, after becoming "refractory" to Revlimid, Kyprolis is successfully eating up myeloma, and extending my life! Seriously, how lucky am I! So of course I want to share my story far and wide, to help anyone that could benefit from hearing about my journey, and to thank those that have had a part in saving my life!


We look like college students here, right?! Girl Power!!! Well actually there were several men in the meeting, but they had to dash off quickly for another meeting and missed this great photo-op! THANK YOU TO EVERYONE that took interest in my story and cared as you did to hear what I had to say about how Amgen's Kyprolis is currently saving my life! I had a wonderful time seeing where my best friend Kyprolis was developed and briefly getting to know all of you, and share how YOUR careers are saving my life. Thank you for caring about my story!


So that brings me to my current stats. Yes, I know... feel free to tell me "you told me so" over and over. How I should have ditched Revlimid sooner and been braver sooner, and switched chemos sooner. Ok ok, I've learned my lesson well. I should have taken my escalating IgA and M Protein more seriously, sooner. But as I've said before, I'm not the bravest cowgirl on this trailride of life. For real, side effects are yucky and scary. Often the "known bad" is preferable to the "unknown" possible good, even when that's not the smartest choice. And make no mistake, I still have very yucky side effects. Unpredictable, sudden, where'd that come from GI stuff, neuropathy, weird swelling, disabling fatigue, tingling, dizziness, headaches, breathlessness, disabling exhaustion, etc etc etc, all which keep me home-bound for most of the week.

My Kyprolis infusions are Mondays and Tuesdays, 3 weeks in a row. I then "crash" on Wednesdays and Thursdays. Begin to feel a little bit better on Fridays, little bit better Saturdays and ok on Sundays. Then It Starts All Over Again, to Infinity. So yes my numbers are better, and I am eternally grateful, but my quality of life hasn't changed. I'm still the "limited cancer patient" I've been for over 6 years now. Not complaining. Just stating facts. Ok, here's my numbers:

WBC's = 2.7 (low= why I feel so fatigued, immune compromised) 
4 - 11 = normal range
RBC = 3.7 (low = weak, fatigued, dizzy, oxygen challenged) 
4.20 - 5.40 = normal range
M-Protein = I'm "abnormal", but not a quantifiable number 
normal/remission = Zero
IgA = 432! Whoa!
70 - 400 = normal range
ANC = 1.7 (was a bit higher previous tests)
1.8 - 7.7 = normal range
Platelets = 159 
130 - 400 = normal range

Hello Myeloma! Did you notice... Kyprolis is WINNING! :)

And for the finale... my most recent Bone Marrow Biopsy #6:
#6 of course for 2016 for cancer year #6- The Results Are: 2-10% cancerous plasma cells.

WhooHoo! Take that stupid myeloma! Get out of my cells, get out of my life, just die off and let me live. You're probably wondering how I can be "happy" with those results? Results that show I am still quite cancerous? Remember, myeloma is incurable, and I will always have cancer. It's the degree of, that matters here.
To give perspective, I was 60-70% cancer at diagnosis December 2009.  
10% after initial 6 months of treatment.  
0 after Stem Cell Transplant summer 2010.
15% September 2013 when I came out of Remission. 

So even though I am still "cancerous", and I will have active cancer floating through my blood forever, I'll take these currents numbers.


And so..... periodically, I'm able to infuse mental helium into my exhausted spirit and body, and get out of my house for something other than the chemo lab and doctor appointments. 

After my "good news" and while still on steroids,
I treated myself to some PROTEIN! 
Bit me back later, but fun at the time! 

My sweet friend and avid supporter Susan and I
having a long awaited lunch date Tea Party.
Thank you Susan for "hating" my bad numbers
and celebrating my good numbers.
I wound up dizzy and with a crazy headache, but we had a lovely time
catching up and celebrating life.
Thank you for all your support and caring Susan!

No I didn't eat all this. Myeloma won't let me! 
Food always seems to look so good, 
better on the plate than in the tummy for me. 


I always feel I should be doing so much more than I do
but I just can't, my body won't let me...

 My daughter chauffeur at chemo with me 

Daughter and Son!!!!

Having "fun" at my Kyprolis infusion 
with the options on my new phone! 

 Stopped to get pet supplies on the way home from chemo
and this guy called out to me to rescue him! 
I just love betta fish, but haven't "allowed" myself 
any additional chores.
But I'm such a softie when it comes to animals
so home he came with me :)

6
6

Life marches forward. Monday Tuesday, Monday Tuesday, Monday Tuesday.
Blood tests every week to make sure I am strong enough for the Kyprolis infusions. So far, so good. I'm proud of my organs for being able to withstand all these intense chemical treatments. I try to hydrate all the time, eat well most of the time, and I am forever grateful for all the amazing medical care I have received and continue to receive. I truly live my life one day at a time, one chemo appointment at a time. Blood test to blood test. Breathing in monthly results to monthly results. My life status, prognosis, strength to move forward, and whether myeloma is, or I am winning, always revealed through my monthly blood work. I move forward with hope and optimism, still not believing my circumstances. Walking the walk as a lifetime cancer patient. This is my life.



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



8 comments:

  1. Onward and Upward Julie. You are amazing!

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    1. Awww so GOOD to hear from you Kristine! Thank you for checking in, but please let me know how YOU are!!! I trust NO news is GREAT news for you!!! Thank you so much for your sweet comment! xoxo

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  2. So exciting Krypolis is working for you. Will there be a time when the infusions can be just once a week? or maybe 2 weeks on 2 weeks off? I'm not sure of the protocol for Krypolis,so I was curious.

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    Replies
    1. Hi Christina! Good questions, and ones I will ask at my Onc appt. Been thinking about that myself, as this treatment is wearing on me. Good results so far, but I am wiped out. Thank you so much for checking in, and I will post about this when I know. And I will comment on your blog too, as I read your story quickly. Thank you for always checking in! xoxo

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  3. For the most part Julie, this is such good news!! How wonderful to be able to meet so many of the folks at Amgen, and express your gratitude for Krypolis and how well it is working to beat back your MM! So sorry you haven't been able to be at work since October...I know your colleagues must miss you, and I'm sad for the students who have not been able to benefit from your counseling. But, you are "keeping the main thing the main thing" and that is to once again dominate your MM, and give yourself the grace to rest and conserve your strength. Four of our grandchildren have Beta fish and there is just something so relaxing as you watch them swim about with such beauty and ease! Looking forward to more posts with continued good news!!! XOXO

    ReplyDelete
  4. Hi Linda! So great to hear from you! And I hear what you are saying loud and clear. I really need to focus on refocusing my direction and take this myeloma stuff seriously! This truly is my year of acceptance of my status, and I thank you for your great quote of "keeping the main thing, the main thing". You are so right Linda! Thank you so much for always checking in (and also appreciating Bettas :) Hi to EZ and post more of your beautiful family pictures! xoxo

    ReplyDelete
  5. Hey Julie! I've been your silent blog stalker and am cheering you on. I think of you often and love your honesty and your courage to share this journey. I too, am hoping your tx can be spaced more to allow you to enjoy more days of feeling like JULIE!

    ReplyDelete
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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.