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Sunday, March 15, 2015

Cool VW's and a Porta-Potty

And just when I was trying to have a little fun...
This Happened!


Oh well... my current life can be summed up as:
Trying to be (somewhat) Normal under (very) Abnormal circumstances.

And so it goes...that fine line between “tragedy and humor”. I have endless amounts of both in my current life. My "tragedies" are quite humorous (at least to me), and I prefer to find as much humor in my ridiculous circumstances as possible.

But before I continue with my story, READ NO FURTHER if you are tired of my “Chew and Poo” stories, or squeamish about biological functions stories :))

If you know me, or have followed my blog for a while, you know by now that one of my greatest myeloma challenges is my sudden, surprising, volcanic lower GI side effects. In as much as I can, I try to plan (the few) social events, work, and things outside my house on my “good GI days”. Truth be told, my most effective "anti-poo" technique is to “starve” myself prior to events, just so I don’t have to worry about GI surprises. Not healthy, but it works! So on GI challenging days I just stay home, knowing my unpredictable and without much warning GI events, can Hit me Fast! Yet I'm not ready to stay home all the time, dang it!! As much I as I try to manage and predict my chemo and medication side effects, my body has other plans for me… and At the Most INOPPORTUNE times!

This story is about that!


So in my effort to have some semblance of quality of life, do a few bucket list items, and just have fun, I recently entered my cute lil Bug in a VW car show. My cancer story and picture were even featured on their event website! I rounded up several friends, neighbors, students, etc, to enter their VW’s too. So of course, I had to be there! No option for cancellation, stupid cancer and poopy side effects!


Knowing this was an evening event, and Jim and I would be gone from the house for 4+ hours, I knew we had to eat something hours prior to the show. So I made us what I thought would be bland, benign and easily digestible: a delish veggie, cheese, cucumber, tomato, basil, herb sandwich.

All seemed to be fine as late afternoon, I readied my Bug for the show. Then SUDDENLY, I began to feel that telltale GI unrest 30 min before we were supposed to leave to meet our group!! Dang you chemo side effects! I just couldn’t believe my BAD luck, and immediately regretted eating. Dumb me for breaking my own rule of No Eating Prior to Events! I thought of calling all my VW buddies to let them know to go ahead of me. But dang it GI system, NO!, you’re not going to ruin my fun! So off we went to the show, me trying to mentally will my GI to calm down and be ok! Gurgle, gurgle, rumble, rumble...

So sweet! So cool!


Wow! It was like a giant VW block party! Beetles, Buses, Karman Gias, Things, etc. So cute, so fun, so many colors, so much love and care that goes into everyone’s “babies”. People recognized me and my lil Bug from the website and asked about my “Bucket List Bug” story. Chat Chat, laugh laugh, Hi Hi, meet meet, greet greet, and thennnnnnnnnnnnnnnnn…  ggggrrrrrrr… rumble rumble, grumble grumble went my gut more! I continued to chat, thinking I could mentally will this impending GI doom away… but suddenly I realized I was in BIG, urgent trouble! I turned to my son and asked him how far away he parked his car, and maybe he should take me home. As more angry, fierce, GI gurgling gurgled, I knew I was doomed, and wouldn't even make it to his car, to get me home to my own bathroom! I'm in a little desperate panic at this moment. I just stood still, hoping the GI volcano would calm...

And just in the nick of time, Not Kidding, I noticed two lovely Porta-Potty's were, oh so ironically, placed not far from where we parked.  Seriously, the irony was so very laughable! I just couldn't believe our group had randomly parked by the Potties! Well if you know me, you know I am no fan of public bathrooms, not to mention porta-potties! I’m thinking, GREAT, I’ll be spending the rest of the show inside a frikn porta potty on a public parking lot!. Because when the GI volcano errupts, it's no short experience, like a "normal person" visiting the bathroom. My Revlimid chemo is the best "Cleanse" out there!

I really couldn’t believe what was happening to me, and of course, during the rare, leave my house event I planned. But knew I was running out of time and choices, and I had to act fast, Really Fast... Well friends, I will spare you any more GI details here… I think you understand the "urgency" of my circumstances. I’ll just say Thank You to the show organizers for your ever so unbelievably ironic and convenient Porta Potty placement, right by my lil cute Bug, just for me tonight! Go, Julie, Go. Be brave, step carefully into that portable potty, that is saving your life tonight! 

LOL! you can see me back there in front of the strategically placed potties!
As I'm "sitting" there, thinking I'll pass out... I'm thinking... Wow, ME- immune compromised cancer patient on chemo, inside a public porta-potty! Can't be! It’s dark now, and I’m feeling mentally shocked and GI awful!.. and suddenly I couldn’t help but remember that crazy “Jackass Show” where the guys went on a gross porta-potty tipping escapade. OMG!… what if some “hoodlum” kids decided to porta potty tip, tip me over?! OMG, I'm just dying in so many ways, sitting there...
Well on a positive note, there was a hand sanitizer dispenser! And it appeared, or smelled lol, that my potty had been recently "serviced", thank goodness!

I eventually made it back to the show, mingled with all my VW pals and tried to have as much fun as I could, even though I was “traumatized” by my GI sabotage, and couldn’t wait to get home… well, you know why…because... well when the volcano erupts... it's an all-nighter...


So what have I learned?
As much as I try to be normal, I’m not. As much as I want to do things, I really can’t. As much as I think I can outsmart my chemo side effects and GI system, I can’t. As much as I think I’m in control of my body, I’m not. As much as I think I can win this cancer battle, I have to realize there is absolutely NO predicting what my body is going to do to me! And this is my "forever" situation, thanks to myeloma incurable nature.

The next day I took my Dex steroids and had a welcomed GI respite for about 48hrs!!  I’m not sure what happened, but mid-day Sunday, I started getting so sick again, and suffered throughout the afternoon, into the evening and night. I felt so awful I couldn’t even finish this blog and post it. Finally now able to keep some ginger tea and ginger cookies in me. Ugh...so exhausted...or should I say... "pooped out" ;)

Perhaps I should rename this blog: Julie’s Adventures in Poo-land!

Thank you lil Bug for my super fun and funny adventures!


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

 

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Thursday, March 5, 2015

Sick of being Sick, but I'm still Here!

Hello March 5th of year 5.
Thought this was a great poster explaining crazy Myeloma:

Today begins cycle #5 hundred, thousand, million something of Revlimid and Dexamethasone. Each month now I am pairing more Rev 15mg with less Rev 10mg to hopefully get to full dose 15mg without side-effects worse then I have now...

But having said that, I've really realized that my functionality in life now is totally controlled by my GI system! "Normal" people can go (lol, no pun intended) about their daily routines, without worrying much about when, where, what, how, what if, of their GI functions. Me... ugh, my whole life now is controlled by thinking I might be ok, scheduling things, then last minute cancelling because I wind up being owned by my lower GI's angry explosions! (Sorry). And coming off my one week chemo break, I'm realizing it's not always the meds causing my issues... it's the cancer itself creating havoc in my system.

Geezzz, back in the day, without a thought of "it", I would be away from bathroom totally. Backwood bushes never scared me :)  I used to be a remote-area backpacker, horseback rider, hiker, skier, biker, walker, beach/lake sporter... not to mention, all my career functions, family events, socializing, etc. Back when my GI system was "normal", anything, anywhere, at any time was possible! Now, here I am, posting this post on a beautiful blue-sky day, inside my house with that stomach yuck, and angry GI, writing between visits to my bathroom. Ok, enough of this.. you're probably all sick of hearing my poo rants, and I'm going to go drink a bottle of Imodium lol !

Here's my recent numbers: 

WBC's = 2.5 (so low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 118 (low), normal range= 130 - 400
M-Protein = 1.20 (yippee! .05 lower than last month), normal = zero
IgA= 1250 = (yippee! 200 points lower than last month), 70 - 400 = normal range
Beta-2 Microglobulin = 2.1 , normal range= .8 - 2.2
ANC = 1.6 (low), normal range= 1.8 - 7.7

Many more stats, but those are the ones I watch the most.
So a bit of good news, thanks to Rev 15mg. My numbers are roller-coaster style, but that's ok. As long as there's not a steady month after month climb, I'll take this- awful side effects and all. My IgA is still triple the high end of normal, but I AM NOT wanting to be more aggressive with chemo treatments, as I would then have ZERO quality of life!

So I do what little I can do, when I can do the little I do. I plan, I cancel, I plan, I attend... then rush home to my bathroom! Such is my life now. But, I have a life and I'm here 5 years after diagnosis! I help a few students each week, and help rescue animals when I can. Since I'm home so much now, and travel is currently out of the question for me, I convinced Jim to let us save another life, needing a home :)

 Just look at that darling face! 
She's been at the shelter since Thanksgiving! Owner surrender :(
Poor girl, no one wanted her, and her time was up...
We'll be picking her up today... if I can leave my own litter box!

And so March is Myeloma Awareness Month... ugh... I'm tooooooo aware of Myeloma, but too many people haven't clue what it is, and how devastating it is...
http://myeloma.org/Main.action
I am VERY grateful for all the new current research and new myeloma meds being developed! Keep up the good work Pharma researchers and scientists! I so appreciate you working to prolong my life!


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.