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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 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. 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 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-only car show. My 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 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 cucumber, tomato, basil and herb sandwich. All seemed to be fine as 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!! 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 to call my VW buddies and 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!

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! I continued to chat, thinking I could 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 and maybe he should take me home. Then more angry, fierce, GI gurgling and I knew I was doomed and wouldn't even make it to his car to get me home!

No joke, and just in the nick of time, I noticed two lovely porta-potties were placed not far from where we parked.  Ah, the irony was so very laughable! I just couldn't believe our group randomly parked by the potties! Well if you know me, you know I am no fan of public bathrooms, not to mention porta-potties! And I’m thinking, GREAT, I’ll be spending the rest of the show inside a frikn porta potty on a public parking lot. I really couldn’t believe what was happening to me, and during the rare event I planned... but knew I had to act fast, really fast... Well friends, I will spare you any more GI details here…  I’ll just say thank you to the show organizers for your ever so ironic and convenient potty placement just for me tonight! 

LOL! you can see me back there in front of the strategically placed potties!
Seriously, I'm thinking... ME- immune compromised cancer patient on chemo, inside a public porta-potty, it’s dark now, and I’m feeling shocked and GI awful!.. and 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 tip me over?! ...on a positive note, there was a hand sanitizer dispenser!

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...


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 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!

The next day I took my Dex steroids and had a nice 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!

 

8 comments:

  1. I just read your post out loud to EZ and my mom and we are laughing so hard. Not that your situation is funny, its just your wit and sense of humor really tickled us! We pictured the moment you spotted those porta-potties, and literally how relieved you must have been when you were safely inside, regardless of how disgusting it might have felt to be using one! We have all had our moments of "no turning back", MM or not, and it is terrifying!

    So happy you made it through, and were able to bless others with your story and your Bucket List Bug, in beautiful Carolina Blue! Keep your sense of humor, and hang in there. At least you stepped out and got through it! Much love and continued prayers for things to CALM DOWN for you!

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    1. ahahaaa thank you so much Linda for letting me know you and EZ and your mom enjoyed my story! I never know who reads my blog, and what they think of my musings :) I should have included in my story that thank goodness the porta-potty was clean and actually had an anti-bacterial dispenser! Hoping all is great with you, EZ, mom and your beautiful family! I think about all of you frequently, and whenever I hear N Carolina mentioned! xoxo

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  2. Well, I always check your blog on the 5's. You know…5…15…25….. I'm beyond happy when I see you have a new adventure to tell. I wait until I need inspiration, (might be a day or two) knowing a great story awaits. And you don't ever disappoint. I love your "bug" story. Everyone on the planet should have a bucket list and work on the list their entire life. The sad part is sometimes people don't have the "notice" that you do. Or the heads-up that perhaps a bucket list should be in place. Some people just flow through life on a raft…and then suddenly something comes up and it is too late to formulate the list. We all should live and enjoy what we can each and every day. Because of you, I try to say yes. I try to just close my eyes and jump in and think later. Because of that, I have done some very interesting things.

    My divorce became final four days ago. I'm on my own again. I was married in 1979. Oh yes…a very long time ago. Now what????? Well, I've been thrown my curve ball of my lifetime so far. What do I do next? Well, I could just sit home and cry for awhile. This isn't what I had in mind. Not what I had planned at all. But because of you, I decided to try to find some good in life. So, I told my friend of over 25 years about it and she invited me to her beach condo on Sunday. Well, I work seven days a week. How am I going to pull off a little fun? So, I decided to call my boss and I told her that I'm taking off on Sunday to celebrate life. She was very upset. I didn't care. Off I went. We had margaritas by the beach and had a great time. Oh I'm so tired now. Nothing else got done. But I don't care. I go back and reread your blogs. I live by example. Go and have fun. No matter what the cost is. Just enjoy. And that is what I try to do now because of you.

    I am grateful for your friendship. I look forward to the next five-day to see if by chance you wrote. Thank you so much for sharing.

    I do have a request from you. If for some reason you are not at your best and time slips by and your blog doesn't happen, would you please put me on a list for your family to just send me an e-mail or perhaps a short note on your blog to let me know that the timing wasn't the best this month and you will catch us up another time? I would gratefully appreciate your effort to keep me in the loop at all times.

    I hope you continue to have great "fun" stories. "Talk" to you soon. And…Thanks for sharing!

    Love, Susan

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    1. Thank you Susan for being such a loyal follower and friend and sharing how my posts affect you! I'm so happy to know my musings have an impact :) xoxo

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  3. Hi,
    Have you ever been prescribed Colestipol for your diarrhea? My husband has MM and takes this drug, which was recommended by his hematologist/oncologist. You may want to look into it.
    Regards, Wendy

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    1. Hi Wendy, no I have not heard of that medication and did look it up. Primarily prescribed for cholesterol, but I did see the diarrhea association too. So interesting. At this time, I alternate Imodium pills or liquid, Pepto Bismal and Kaopectate. I also have RX strength Lomotil. Thanks for letting me know of this option! And I wish your husband the best. Please share his Dx and treatments, if he's ok with that. Thank you for visiting and posting :)

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    2. My husband was first diagnosed with MGUS about 15 yrs ago. About 5 yrs ago, he was diagnosed with active MM. He had an auto SCT about 4 1/3 yrs ago at Dana Farber in Boston. He was in remission up until recently when he showed an M spike of .57. He's been on 10 mg of revlimid for about 3 years. The Dr just added Dex because of the recent M spike. He'll be tested in a month. We're hoping the Dex will control the M spike.
      Ask your Dr about colestipol. It's helped my husband with no bad side effects. And, thanks for your blog. It's very uplifting. Wendy

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    3. Wow Wendy, MGUS 15 yrs ago! I wonder how long MM was brewing in me. I wasn't ever diagnosed with anything other than MM in 2009, but wonder about the onset. So glad to read that his remission lasted so long. I do think doing maintenance Rev is key. Hoping his M spike stays low, and he can maintain his status for a very long time on Rev. Wishing you both all the best, and thank you for your kind words about my blog!!! :)

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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.