And just when I was trying to have a little fun...
This Happened!
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 :))
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!
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...
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!
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!
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.
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!
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!
ReplyDeleteSo 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!
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
DeleteWell, 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.
ReplyDeleteMy 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
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
DeleteHi,
ReplyDeleteHave 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
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 :)
DeleteMy 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.
DeleteAsk your Dr about colestipol. It's helped my husband with no bad side effects. And, thanks for your blog. It's very uplifting. Wendy
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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