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

Friday, September 25, 2015

Numbers Elevated, New Doctor… Dang, I’m just gonna eat Mint Chip Ice Cream!

Stupid Myeloma! Stupid Cancer! Stupid Side Effects! You stole my life :(

 So just when I think my MM numbers might have turned around, and I’m thinking 10mg + 15mg Rev is kickin in and doing it’s thing for me, Bam! my most recent labs hit me with elevated IgA and elevated M-protein AGAIN. Ugh! So disappointing… and me, the eternal optimist, always trying to think positive about this stupid situation, I am stupidly surprised when my cancer numbers are elevated. Geezz, hello Julie, you have incurable cancer, whatcha expect? Not a happy camper here.
So with my recent news and how HOT it's been,
Mint Chip it is!

And just when I think I won’t have much news to report, and my post will be relatively short, so much always seems to happen in this life. Just after I posted last, I found out my incredible Oncologist/Hematologist who has seen me through this 5 year, 10 month MM journey, has her own health issues and has to take extended time off. The office says she’s "gone indefinitely!, but may be back". My heart just broke for her... and me. She has been such a wonderful Doctor for me, as she's such a caring, professional, intelligent woman. I have loved our relationship, as she would always take endless time to listen carefully, analyze my facts and stats, and go with whatever I felt comfortable with, based upon my MM type and status, blood work, and side effects. I think the stress of Oncology really affected her, as she really cared about her patients. I will miss her terribly. "The Only Constant Is Change" they say...
Beautiful lady, inside and out!
They have assigned me another wonderful woman Dr and she just happens to be the Head of the Oncology/Hematology Dept. Maybe word is out, that I am “high maintenance” and require a Dr that is willing to take lots of time to communicate/analyze with me in great detail! I enjoyed meeting her, and I think we will do just fine together!


 Next shockeroo, that I'm sure most of you have heard about, is the recent flash flood disaster in Zion, Utah, killing 7 Canyoneering Hikers in a freak, sudden extreme thunderstorm. We knew some members of this club, and our hearts are so broken for them and their families. Such a sudden disaster, spotlighting Mother Nature’s natural furry unleashed. I cannot fathom what their families are experiencing and our hearts go out them. I cannot wrap my small brain around so many "Bad things happening to Good people" continually...

I lament how limited my life is now due to my volcanic GI and debilitating fatigue and weird physical side effects. I so miss my outdoorsy adventuresome self. How I wish to venture out on walks, hikes, rides, local travels, etc. How I miss my spontaneous life of just getting out there on beautiful days, inhaling life and our world’s beauty. But honestly, I’ve never been into high adrenaline sports. I always erred on the “safe side” of everything, always “fearing” what might or could happen. Sure I’ve had some close calls with horses (bucked off, falling off, lol etc) and those were always huge wake up calls! My kids sometimes comment that they wish we didn’t parent them with so much caution. Perhaps my over-analytical self, always thinking of “actions and consequences” worked over time, and here I am now, feeling cheated out.... 
So it’s always very thought provoking to me, the people that just “Do It”, and get out there and partake in adventures on an entirely different level than I ever have or ever will. They never miss out on fascinating adventures, as I did, and currently am…
  
Next shockeroo has been so many student/college-age suicides in my local circle. Whether by choice or “accidental” drugs/alcohol related, it is such a tragedy that there are so many of us with debilitating, incurable, chronic illnesses doing everything to live, and so many sad souls out there who are so sad and depressed, they see no other option. Just so very heartbreaking to know of young lives snuffed out by choice, and us cancer patients are “dying to live” and they were “living to die”...

 So here’s my lousy recent blood test news- stupid myeloma please leave me alone!
 


WBC's = 2.8 (low= why I feel so fatigued, with volcanic GI) 4 - 11 = normal range
M-Protein = 1.37 (up again) normal/remission = Zero
IgA = 1770 = (up again, over 4x high normal) 70 - 400 = normal range
ANC = 1.3 (low = bad) normal range = 1.8 - 7.7 
Platelets = 118 (low = bad) normal range = 130 - 400


It's interesting how I can associate and connect my current physical side effects and yucky feelings now. I look back retrospectively to 2008, 2009 and have those Ah-ha moments where I can associate my weird symptoms and physical feelings from back then, with what is happening now. I can actually "feel" the myeloma taking over and how it makes me "feel". I IGNORED IT, back then, but I now know what my extreme fatigue, breathlessness, extreme headaches, nausea, GI issues, achy, prickly feverish feelings mean. Constantly having an over-all, ever-present feeling of the intestinal flu, and being on Fire from the Inside out all the time, is the best way to describe my life. But I do what little I can, when I can do those little things I can!

So those days when it's just so crazy HOT outside, and I'm just burning up on the Inside, I just say WHATEVER!... and treat myself to a bowl of Mint Ice Cream and call it a day!

 Hoping you are fulfilling your dreams and goals daily! DON'T WAIT, OR PUT THINGS OFF! Your time is of the essence, everyday! Make it count, and please smile at the little things, and be kind to yourself and others always!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!

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Saturday, September 5, 2015

Vicarious Travels

Hello September!
Yep, life marches forward.
2016 is just around the corner! Can you believe it?!

For me... Same story... Different day..

I'll be brief this time, and post more pictures than words.... Well, I'll try :)
This amazing singular sunflower suddenly grew from where we have a seed dish for the resident (wild) sparrows. It's so giant and so vibrant! My computer faces the window looking out to our backyard, so I've been watching it's miraculous growth minute by minute. Although I don't leave the house much, I am so very fortunate to have such spectacular natural beauty surrounding me all the time. Yes, myeloma completely limits my life, but my life is certainly not limited!

When I do go out, people are always so surprised how much hair I have now.
My response: "it's hair on steroids"!! Since it's growing out so successfully, I would be kinda sad if switching chemos thinned it again, but actually I found a shaved head very freeing!

Speaking of going out, I did finally make it into my office once last week. Wow, what an accomplishment. Ugh not only is the unpredictable volcanic activity so limiting, so is the EXTREME FATIGUE from my super low WBCs, ANC, etc. But once I'm out, I pep myself up and try to be a bit of who I used to be. I also stopped by my local pharmacy, and picked up a little rainbow of anti-volcanic-poop potions. Lol, who knew it came in so many flavors! I should have snapped a pic of all the cheery options available, as I only bought a few. (Ah, the things that excite a cancer patient!) The clerk smiled and asked if I found everything I was looking for, and I smiled back and said yes, and in almost every color of the rainbow!


Speaking of going out, after corking myself up on Imodium to make it into my office for a few meetings, I was able to enjoy another few hours out of my house the next day. Sometimes, I am so successful at corking myself up, I actually get a day or two relief, before the angry volcano get really angry and visits me again. I'll spare you the angry "backfire" backlash descriptors!

My sweet artist friend Kathy has been inviting me for a year or more to come to one of her creative painting/collaging workshops. I haven't been able to, due to my completely unpredictable GI situation and debilitating fatigue, but also I just haven't felt very inspired or creative. (Crazy how cancer sucks the life out of me! Duh!) But surprisingly, it finally worked out, and look at these cool creations with these sweet ladies!

Can you guess which one is mine?

And another milestone for me here? Can you guess what it is??
Yep, my hair is long enough to toss it up in a clip, 
just like I used to wear it 
before Cytoxan and Melphalan scalped me Summer 2010. 

And speaking of going out and about, our lucky kids are doing the family traveling for me/us. Yes of course Jim and I "could" have gone, but heck NO to the total NO, I wouldn't risk all the public cooties and contamination with my almost neutropenic immune system! (Current Stats below)...not to mention the GI trauma of trying to make a flight on time! Ha! I panic at the thought!

So Scott and Ashley went to Kauai without us...
 



Am I jealous? YES!
Wish we had gone? YES!
Willing to take that chance of illness disaster like 2012? NO!!


And Alissa and family are off to Western Europe... without us...




Am I jealous? Kinda!
Wish we had gone? Kinda!
Willing to take that chance of illness disaster like 2012? NO!!

And here's why I don't travel, don't take risks with the public, avoid germs and human contact and I feel so yucky most of the time: 

WBC's = 2.3 (low= why I feel so fatigued, with volcanic GI) 4 - 11 = normal range
M-Protein = 1.01 (down a bit!) but- normal/remission = Zero
IgA = 1530 = (down a bit, but still almost 4x high normal) 70 - 400 = normal range
ANC = 1.3 (low = bad) normal range = 1.8 - 7.7 
Platelets = 121 (low = bad) normal range = 130 - 400

So that's my early September update. Other than my bi-polar GI, extreme fatigue, neuropathy's burning and tingling sensations, bone aches, headaches and weird random body aches, life is good. Home is lovely, and I'm still a bit useful to my students online, even though I don't go into my lovely office much anymore. Our animals keep us continually entertained, and Binkx the senior kitty is doing great in diapers, and I love love love the kitty's pee-free living quarters! We buy human baby diapers, and I cut a hole out for Binkx's tail. What do you do for entertainment??? ahahahaa :)) 

Happy ol boy, feeling much better now!

 Stupid cancer! 
You really are so stupid, and such a waste of time and life!
Go away and mutate somewhere else!


These beautiful love doves visited the shade of our amazing sunflower
as the wild sparrows enjoyed the seeds scattered below.
Doesn't the sunflower look like a perfect birdie umbrella?!
Nature... how I love and adore you!
You refresh, inspire and energize me!

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



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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.