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

Saturday, June 17, 2017

And Just When I Think Things are Leveling Out...

Hello 6.17.17

Can I say it again... Yep, I thought not much would happen in just 10 lil days between posts :))  But who am I kidding, this is life on the Myeloma Roller Coaster!


Not long after my last post, I took my myeloma status labs. I was really looking forward to knowing how I was doing, since beginning the 2nd phase of the Darzalex protocol. See, for the first 8 weeks, Darza infusions are every week. Then beginning week 9, infusions are every other week. Then beginning week 25, infusions are once a month. Got that? Here's the dosing "fine print".. It's really confusing at first, then it all makes sense. With my plummeting numbers and treatment success (in just 2 months from the initial weekly treatments), I was very curious how this 2nd phase treatment, every other week, would fare.
What's your guess what my IgA did???


Whhaaat? Yep, numbers don't lie. Up I go again. Can you believe that? C'mon Myeloma, stop messing with me. I laughed when I saw this. Shocked? No. Surprised? Yes. I really thought I'd have at least a few months of stability, and if I was "lucky", even continued declining stats. Oh well. Not the case. Honestly though, I need this reality slap, to get me out of my denial bubble. I need a wake up call reminder as to why my diagnosing oncologist referred to "my type" of myeloma as "high risk". My pattern- I respond well to initial treatment, but then "unrespond" fast and furiously, becoming "refractory" to the medications, and my myeloma gets aggressive fast. 

Fortunately, this month's results might not be as mysterious as some of my other roller coaster ups and downs. When I met with my Dr back in May, at the start of the every other week protocol, we discussed my great response to the Darza, Pom, Dex combo, and decided to lower the steroids from 40mg per week to 20mg, as I've been on Dex steroids since mid 2013 continuously (except for initial treatment in 2010). I was happy to give this a go, as I do worry what non stop steroids are doing to my body, while helping to pummel myeloma.
So for the remainder of May into June, perhaps the lower dose of Dex did affect the impact of Darza and Pomalyst? Plus, if you know me, and you.know.me..., I took the opportunity to lower the steroids a step further. In light of the new every other week Darza dosing, I went ahead and opted to NOT take the Dex steroids on my Darza week OFF. So not only did myeloma not have Darza attacking it weekly, myeloma got a break from Dex steroids smacking it around too. Oooppss! Maybe not such a good idea. Ok, ok, I will do Dex weekly, regardless of the Darza break. (Yes, this was all discussed this with my Dr, and she of course agrees.)


And if all that doesn't spin your head, let's not forget the 3rd component to this "Triplet Cocktail", my pal Pomalyst, and Pom decided to throw me a curve again too. Can you guess what my recent labs also showed? Yep, Low low low WBCs. Hello to Neutropenia again. And the irony, guess what I had been doing recently? Everything someone Neutropenic should not. If you recall my previous post, I was so excited how well I was doing after seeing my mid May labs, I went to my office- (cooties), went to the grocery store- (cooties), and was excited to buy, prepare and eat FRESH fruits and veggies (cooties). All this, not knowing I was Neutropenic again, and "should not" have been exposing myself to all those potential pathogens! Fortunately, nothing bad came of my "wild adventures" to my office and public places, nor from eating fresh fruits, veggies and Bleu Cheese dressing! As compromised my immune system is, I somehow manage to stay quite healthy. Must be all the ranch dust and animal activities strengthening my immunities (lol), and all my OCD anti-bacterial contamination precautions that everyone laughs at me for :)) 

Of course I was eating "everything" (fresh), I should not have been..
But so yummy to enjoy, to feel carefree
and feel "fake healthy", not Neutropenic for a change!

Not long after seeing my lab results, I knew the phone calls coming in early Monday morning were my awesome Dr and Nurse, informing me of my status and they had already sent the prescription in for my WBC immune system boosting Neupogen Zarxio shots! Here we go again. Cowgirl up Julie, grab that belly chub, get that needle full of that magical serum in, boost those cells right back up! Welcome to my ever present, unpredictable predictable myeloma roller coaster.


I'm so brave now... 
Just had to wrap my head around
"This Is My Life"... forever

How about some good news: 
My Serum Protein Electrophoresis, M Protein, still shows as "Abnormal", but "Undetectable", so although my IgA is showing upward movement, I'm hoping it's just a fluke this month, due to the reduction in meds. My other labs are trending pretty good, generally in the low range, and if I'm lucky, the low low edge of low-normal. So overall, I would say the Darza, Pom, Dex cocktail is doing it's thing and keeping myeloma suppressed, even with all the ups and downs.  

 I'm often asked how I pass the time during the 6 hour infusion:
Lots of selfie practice
which entertains the other patients

 Lots always going on in the chemo lab and
I've gotten very proficient texting and writing one-handed

 And wonderful nurses and patients too chat with

 And other types of "cocktails" to dream about!

All in all I am so very lucky to be in the circumstances I am. Wow, 7 years fighting this monster. Can you believe that. There are so many patients that haven't had the treatment success and luck that I have had, so I count my blessings daily. Do I eat only "organic" now? No. Do I eat and live healthy and balanced? Yes. Do I remain grateful and optimistic? Yes. Do I do anything extreme to compromise my health? No. I have a busy and rewarding life, but incredibly limited compared to my pre-myloma life. Am I bitter? Sometimes. Am I depressed? No. Am I angry? Yes. Do I accept my circumstances and situation? No and Yes. I am still in disbelief of my diagnosis, but I accept what has been dealt my way, as I know... "I cannot control the things I cannot control", so I constantly analyze it, try to understand it, research it, and always move forward, finding happiness and delight everyday, no matter how yucky I feel, or how pissed off at myeloma I am. 



And then it hits me. I've had to confront, process, treat, deal with Myeloma mentally and physically for over 7 years now. Constantly. Not a day goes by that I cannot not think about Myeloma. I have cancer. Incurable cancer. For the rest of my life. It is me, and I am it.



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




1 comment:

  1. Julie. Love when you write about your wild adventures..that's my husband when he ventures in to our local smaller supermarket..again..my heart continues to ache for you and all cancer patients..I continue to be amazed by your strength..humor and truth..healing thoughts sent to your husband as well... may your retirement bring you Joy as you think of the countless students you positively influenced.. to paraphrase Dr Seuss..don't cry because it's over.. smile because it happened.. with love.. Karen

    ReplyDelete

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.