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Saturday, March 29, 2014

My March Myeloma Madness

Hi Everyone!
First of all, thank you to my followers for your detailed replies and suggestions on my previous post! I truly, very much appreciate your comments and insights!!! Thank you to all my invisible followers too! I appreciate you checking in and reading my musings.

I'll (try) to make this short(er) than usual, as I will have more of an update after my 2nd oncology appointment next Friday.

 Here's me and sweet Abbie over a year ago. Just loooove her!!!
She's a death row rescue from the mean streets of LA

To be honest, I have been too optimistic (perhaps naive), trying to see my situation as better than it actually is... hence MY stubborn stupidity at remaining on low dose chemo. So after my oncology consult this past Thursday with my City of Hope SCT Doc, who very nicely (but seriously) let me know that the low dose Revlimid I am on needs to change NOW, if I am to make an impact on the increasing levels of cancer within me. Ok I get it. Myeloma is winning right now.

Dr Spielberger (who is Director of the Kaiser-City of Hope Hospital Bone Marrow/Stem Cell Transplant Department), clearly let me know that I should be doubling(2x), tripling(3x), quadrupling(4x), quintupling(5x) the level of Revlimid I am on. And if Rev and Dex stops working for me, we'll move on to all the other Myeloma mashers!

I laughed when he wanted me to jump from 5mg to 25mg ! ahahaha Doc... kill me fast! I reminded him of my death defying allergic reax in 2010 when we went from 10mg to 15mg. I quickly developed a lovely blotchy, patchy, raised rash moving rapidly over my body. I looked like my Appaloosa horse RedBear! I had to eat Benedryl like candy and we immediately stopped the 15 and went back to 10, and stayed there for the remainder of my initial 2010 treatment. Doc said ok, ok, we'll start slower... how about trying 15 next RX?? Hello.. NO, I said... let's be gradual here and go from 5 to 10 and then see if I can tolerate 15. He's very amused by me, in a good way :)

Why this now, after a few months of (minimal) success? My Myeloma contaminated IgA immunoglobulins haven't stopped rising (4x the high end of normal), and my M-spike is spiking more. And you know what??? I secretly knew. How? I've been a sickie most all of March. (I have to always remind myself and others: MYELOMA IS A COMPROMISED IMMUNE SYSTEM CANCER! So no wonder I am always sick! duh Julie!)
I only went in to my office a few days this month, and the times I did, I shouldn't have. Last week, the one day I went in, I was so dizzy and tingly (from hardly eating for a week), I thought I would pass out!!! I told my sweet mom/daughter student appointment that I felt faint, just in case I did a face plant on my desk!

First I had a crazy sinus fever thing for over a week to 2 weeks, then a week-ish later, I developed lower GI volcanic issues... where, (sparing you the gross details), my bathroom became my permanent residence and office. I thought, this will pass, probably related to medication overload. So I contacted my local oncologist and we reduced the levels of Mepron and Acyclovir (even though she didn't think that was the cause, but wanted to see if my GI would calm down). Well it didn't, except on Dex steroid days. I even tried going out to dinner with friends, and again, sparing you the details... had to leave the restaurant FAST, ditching them and Jim, racing home and "praying" I wouldn't ruin Jim's car ... BARELY making it to the bathroom... ugh... that was sooooo awful!!! I've lost 5 pounds this month, but that's ok. What mid-life girl doesn't want to lose a few pounds? Well, not this way, thank you very much stupid Myeloma challenged immune system!

And so, realities are (finally) setting in:
I have cancer
I'm a sickie
I feel lousy more than I feel good
I can't do much of anything, as I have to stay close to my bestfriend "John"
Cancer is winning
Myeloma is stronger than me
My internal Army, Navy, Marines, Air Force, needs better "ammunition" asap!
My immune system continues to fail me
I have felt yucky most all of March
And this... is my "March Madness"

But I will battle forward and increase my friend Revlimid
I will eat Benedryl like candy if I have to (I like that it's hot pink!)
I will TRY to accept that I have cancer, and I am not the Julie I used to be
And I will savor the good days, and be pissed at the bad days, but I will never give in Myeloma!
You hear that Myeloma...  I'm not giving in or up. I'll fight until I can't !!!

Last Sunday "selfie" when Dex steroids temporarily helped me feel better
for a day or so... then right back to GI drama.
Hello Dex again today, please let me eat and pretend to be normal!!!


Simple explanation of IgA immunoglobulins. Funny how certain article realities finally sink in!

LOL- not so short post after-all!!!
Thanks for reading and caring, and I will update on my medication plan in a week or so.

Thank you followers!!!

13 comments:

  1. Julie, So sorry to hear mm came to visit again! I know Linda & Ernie and live in NC and was treated at Duke. I am two years post SCT & on Rev maintenance 5mg. After transplant, I started on Rev 10mg and after about a week every time I ate had GI issues, reduced to 5mg and still occurred. Finally visited gastroenterologist last November and was diagnosed with celiac. I am not diligent enough and if I have something with gluten while I am on week 2 or 3 or rev I get sick, the week I am off not--so the rev definitely exacerbates it. So hate to add one more thing, but you might try going gluten free and see if that helps. Wishes for you to feel better & mash the mm down! Carol C.

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    1. Thank you Carol! See my reply below :)

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  2. Dear Julie, I have no medical advice to give, only a caring heart and thoughts of relief being sent your way. Your suffering makes me so sad and I wish there were some sage words I could offer to give you relief. Instead I send a cyber embrace and lots of loving thoughts.

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    1. Thank you Ilene! See my comment below :)

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  3. Love you Julie xo Praying for you every day.
    Leslie C.

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    1. Thank you Leslie! See my reply below :)

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  4. It was great to see you last month while you and Jim were cruising around in my track. What an awesome surprise that was!! I love you Julie and feel helpless when I can only give you some cyber hugs and leave comments. I am wondering as well about other medications. I wonder if other MM meds work better for you? Less side effects or more tolerable. Can you eat pot brownies? Love you Julie.....Madonna

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    1. Thank you Madonna! See my reply below :)

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  5. Morning Julie! So sorry to read about your GI issues...they definitely will control your social life if not under control :-( Not the most fun way to lose 5 pounds. I love the picture of you and your chocolate labbie, where in spite of everything, your smile is a beautiful thing!

    I agree with Keith...maybe a second opinion as to the next step/drug to try? There are alot of experts out there for sure, and your life is worth fighting for!
    EZ's latest lab work shows him still in remission with no detectable m-spike, and we are so grateful. He is so unique in how he can tolerate Revlimid...must have a cast-iron stomach! As our friend Carol suggested, a gluten free lifestyle may make a difference for you as it has for her. I recently read Grain Brain and he considers gluten to be "poison" to our brains, and Wheat Belly condemns it as well. We still love our bread from time to time, but are trying to severely cut back on it. Less seems to be best.

    Enjoy spring as best you can friend and keep us informed! Rest, enjoy some dark chocolate and red wine, and eat lots of fruits, veggies and grass fed red meat! Much love...Linda (and EZ)

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    1. Thank you Linda! See my reply below :)

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  6. Hi Everyone! Thank you so much for your heartfelt replies and suggestions! I sincerely do appreciate you reading my blog and offering suggestions. I am finally feeling much better and I am eating more, and losing less lol. I think I may have had some sort of (lower lol) GI bug, that decided to move in and stay a while. I am still insecure about what will happen when I eat... but the negative result is lessening! Yesterday and today has almost been "normal" and I actually went into my office and saw some students! Yay for a bit of normalcy!!!
    As for a second opinion, I don't feel this is necessary as I have 2 oncology "teams". I feel very comfortable with Kaiser connected to City of Hope Hospital, and all my oncologists consult with each other, and are suggesting and doing all the cutting edge MM treatments. They cite all the recent research, and they know I have excellent insurance that will cover "anything".
    Honestly, it's me that put the brakes on higher doses of Rev. It's me that thought I would wrangle MM back with low dose. It's me that is not feeling brave to try other MM drugs yet. My oncologists offer all the current and cutting edge meds, I just haven't wanted to switch off of Rev, until I feel for certain, it's not working. 5mg is nothing, and I know it, so tomorrow I will acquiesce, and go for 10mg for April and see what happens. If my numbers don't decrease significantly, I will go for 15mg and see what happens from there.
    As brave as I appear, I am not anxious to suffer from new side effects. I know Rev, and me and Rev did GREAT in 2010, so the idea of changing meds and dealing with new potential side effects scares me :/
    Truly, I have fantastic Drs that know their stuff, and offer everything that we all read about online, on all the MM sites.
    Again, I thank you so much for caring and sharing and offering suggestions. I will muster my ol cowgirl bravery and raise my dose, and see what happens. Thank you from the heart, and I will post in few days what we decided. Love and thanks, Julie

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  7. Hi Julie,I know a little of how tough this has to be on you.But you know I have a lot of faith that you will continue to help so many others who
    are suffering and not nearly as positive as you.Life is for living and
    few do it as well as you.
    Ron

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    1. Thank you Ron for always reading and commenting!

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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