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

Thursday, May 29, 2014

Seriously GI system, just Calm down and let me Pretend to be Normal!

Well it's the end of May, and the last week of my 3 week 10mg Revlimid + Dex cycle.  Honestly, it's been a lousy week (month, year, etc) as my lower GI system has been rebelling. Against what, I don't know.

Actually, I have more lousy GI days then good days... but it's certainly all relative, I constantly remind myself... as in the BIG picture of cancer...  I am able to function fairly well... most days. But it seems like my GI system has ruled my life for years now. Who knew, I sure didn't know, that IGA immunoglobulins play such a critical role in the intestinal system... no wonder I always seemed to be so sensitive to foods, digestion, germs, etc, and then I get diagnosed with IGA Myeloma!


But, dang it... my plan was NOT to live life dependent upon my proximity to my bathroom!
I make plans, and cancel them
I hope to walk for a little exercise on Dex days, but I can only really walk in my own backyard, since I never know when "John" will be my best friend
I make plans, and cancel them
If I eat out... I never know if I'll have instant GI retalliation
I make plans, and cancel them
I schedule myself with students, hoping to make it into work, but then I can't... as I certainly don't want to be in my office chatting with students, then suddenly have cramps and have a "biological emergency"!
I make plans, and cancel them
My life: now centered around my GI functionality... make that, dysfunctionality! ugh!

Sorry if this is "TMI" (Too Much Information), but it's my reality this time round with Myeloma's recurrence/relapse. I had "issues" before, but I don't recall days and days and days of "instant processing" of food, like I have now.  I don't recall my 2010 chemo and meds affecting me quite like this, every week, every month. Sure when I was hospitalized for my stem cell transplant and had high dose chemo, every part of me was a wreck, including my GI system. But dang it stupid stomach... let me be!

I vacillate between, ok I just won't eat... thinking nothing in, nothing out. But that's dumb, and besides, I get weak, dizzy, head-achy, etc, so I eat, trying my normal healthy stuff, to bland, boring, plain stuff... but this week, it still went thru me. Jim even buys me delicious (lol) options of Gerber baby foods. That went thru me this week. Plain baked potatoes went thru me. Boring, no food value Saltine crackers went thru me. I tried good ol chicken-rice soup today. That went thru me. Shheesshh this has been going on since late last Sunday (and last month, and the month before, and before, etc). Dex and Rev often has the opposite effect, binding me up. So what's up GI system???

So I give up, give in, and later this afternoon, worried I had lost so many nutrients for the week and hadn't taken my Acyclovr, Mepron, etc for days, I decided to go for broke and tried a chocolate Ensure with my meds... and surprise surprise, so far so good! So hopefully I am suddenly better... gurgle gurgle, rumble rumble... only to start the med cycle over again with Dex tomorrow... then hello GI distress come Sunday, Monday on... ugh!!!

On another note, I found out today that my Myeloma neighbor learned his MM is back. He was diagnosed about 6 months after me, and thru our neighborhood grapevine we discovered each other's MM plight in 2010! Same medical team, same Kaiser facility, same meds, same Auto SCT at City of Hope, same Rev maintenance, etc. But he had remission for 3 and a half years!!! Sadly, welcome back to the treatment club buddy...

Between bathroom visitations, I rushed over and took my monthly blood tests today and have my oncology check up next week...
Let's see what story my Stats tell this month...

In the meantime.......... This makes me happy!!!


Pharrell Williams Happy ~ Happy Dogs (and a Cat) playing in Australia 

Hoping all is groovy in your lives!
Thanks for reading my rants :)

 

12 comments:

  1. I'm having a similar problem. I eat ,and then I need the bathroom. It's maybe not as extreme as yours, but especially the 3 days after I take dex, it's not good. I've done the same and not eat but that's not really good. When I first talked to my doctor he said try immodium. Especially since I have a part time job, I need to be ,ugh, not running to the rest room. It does help some. Then last time I saw him, mentioned it again, and he said add some Metamucil to help hold stuff together. That's also helped a little. Maybe not completely though. Sheesh... What a life. Although I'm not complaining, (am I)..

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    1. Hi Christina! nice to meet you, and thanks for your comment! I never know who's reading, and I appreciate the MM feedback, knowing others have this crazy GI stuff! I never know what my symptoms are caused by... MM or med side effects, or being sick! And my GI reax starts day 2 or 3 after Dex too, so thank you for mentioning that happens to you too! I just found your blog also! WOW, congrats on your 9 years!!! (right?), and I like your simplistic philosophy. We want to downsize and declutter too... just takes so much emotional and physical energy. Thanks for stopping by and for your great feedback! Take care, and feel well Christina!

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  2. Julie, I also must deal with the "chew and poo" from Reverrihea. Please let us in your blogosphere know if you figure out something that helps. Lovey

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    1. ahahahaaaaa I just love your comment Lovey! I laughed for a long time over "chew and poo" and Reverrihea!!! ahahahaa!!! I may just have to "steal" those cool terms!!! So glad to know others have this crazy GI syndrome ("misery loves company" its been said lol), as I can't figure out what's up. From clogged up Dex days to Reverrihea... what a crazy "club" we all belong to! Thanks for your hilarious comment Lovey! Feel good, and take care!

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  3. AnonymousMay 30, 2014

    Julie, that's a really shitty update....I hope you are able to get further away and go on some outings and drive-bys in my neighborhood :-) Love you Madonna

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    1. ahahahaa Madonna! you have the best way with words!!! ahahaaa!!! Let's try to plan our date again, and if all else fails, we can hang out at my house, so I can run to the BR in an emergency! Loooove you, and sorry I missed your BBQ... and this is why!!! ugh!!! xoxo

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  4. AnonymousMay 31, 2014

    Julie, also have similar probs on rev maintenance so went to lower dose 5mg 3 wks on/1off, but still had problems, diagnosed with celiac, have cut out gluten & most dairy, problems not as much, but does still happen toward end of cycle. Have tried eating a coconut macaroon a day and that seemed to help.

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    1. Hi Anonymous, thank you for your comment. In the last few months I went from 5mg to 10mg, but funny I never had this degree of GI issues back during my initial diagnosis treatments. I wondered about Celiac too, and try to avoid gluten and most dairy, but all my allergic reax I had before diagnosis are gone now. So strange! I love the idea of a coconut mac! I love them. Thank you, and if you have a blog, let me know who you are :)

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  5. AnonymousJune 02, 2014

    Hang in there Julie! You're a STONG opponent to that crappy MM!
    Love you always,
    Leslie C. xoxo

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    1. LOL thank you Leslie!!! you are sooooo funny!!! :) I deeply appreciate all your love and support throughout the years! You are such a sweet friend!!! xoxo

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  6. Oh Julie, I'm sorry! No fun to be chained to "John". EZ has been so fortunate in that his system has handled Rev without much complication. He is on 10 mg every day...no Dex, no break, for over 3 1/2 years. He is the exception for sure. Hope the Ensure continues to work for you and that your lab results are encouraging. I LOVE the song Happy...just makes me smile no matter what. That video of Happy Dogs is cute! Hope you are able to get out with your dogs, horses VW Bug from time to time this Spring!

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    1. So good to hear from you Linda, as you haven't written a blog update recently. Thank goodness "no news is good news" for EZ! So glad the 10mg Rev is doing is medical magic for EZ! I often wonder if I hadn't stopped in 2012, if I would still be in remission. Oh well, that ship has sailed. Hoping all is wonderful for you and EZ and your beautiful family! Thanks for stopping by Linda! :)

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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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic