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

Saturday, July 25, 2015

That Fine Line between Tragedy and Humor- (I'm always looking for More humor though!)

July 25, 2010-
5 years ago I was just days away from being released from City of Hope hospital!

By this time 5 years ago, I had survived high dose Melphalan chemo (which successfully killed the myeloma cells and almost me), celebrated the infusion of my stem cells (my life renewing "elixir"), and I was slowly recovering from the terrible awful infection complication "Staphylococcus aureus" , which invaded my system from my Hickman catheter- (ugh-you can Google that lovely infection!).
 
From the catheter implantation site, this yucky infection took over my body when the expected death defying neutropenic chemo crash happened. I was so sick and feverish, I barely recall the nurses and doctors rushing around scheduling and performing "emergency bedside surgery" to remove my infected Hickman catheter. But that happened in a blurry feverish fog, along with my chemo crash side effects. Eventually, the very slow build me back up recovery process finally kicked in!

Thankfully, a couple weeks later, things were beginning to improve. My new fragile (transplanted) immune system "engrafted" and was working hard to bring me back to life. At some point the hospital staff let me know I couldn't be released until I could "swallow" pills, eat/drink normally, etc, and I had to accept a Picc line to replace all the failing arm/hand IV's. The half dozen high dose antibiotic bags hanging from my large IV stand couldn't come home with me... so my ticket out of the hospital was accepting a (portable/implanted) Picc (infusion) line, so I could be cared for at home, and dosed/dispensed (at home) all these powerful antibiotics to send Staphylococcus aureus packing! I was so terrified to have another line implanted, that I resisted for a week. I was really scared I would develop another infection at the new insertion site. They sent in their expert staff to convince and reassure me- (a specialty team with high tech video equipment so I could watch the process).  When they again underscored and emphasized it was my only "ticket out of the hospital" I accepted.  And thank goodness I did, as I was running out of veins for IV's.


I was too sick to write much or take pictures back then, so I don't have a cool picture of my gross infection or IV stand with a half dozen bags of antibiotics, nutrition, hydration, etc. (I just had my little Razor phone back then), and I don't recall taking the millions of pictures back then, like we all do now with our "smart phones" lol). But here's 2 pictures of me once I was home:

Here I am with the amazing home IV infusion bottle.
I had a visiting nurse come and assist
with my Picc line, antibiotic infusions, blood tests, etc.
Check out my Aug 2010 posts for my thoughts back then :)

Here's my STERILE Picc lines.
I emphasize sterile, as I was a little too over confident with my Hickman,
thinking me,  I wouldn't ever get an infection... HA!
Notice my very thinning hair.
But still amazing I had hair during my transplant
and for another month, until I realized it was time to buzz!

I was a changed person at that time, but trying to battle back to me... My SCT complications ordeal was quite the reality check for me, as I truly believed I'd never get out of the hospital...

Well that was life then, July 2010... and here's my July 2015 update:

My Neupogen shots a few weeks ago sure did successfully prop me up, well at least for a few days (good experiment!). My WBCs increased, and for a few days my side effects lessened. I've learned, and my Drs agree, that my GI side effects are definitely correlated with my low super challenged immune system. Simply put, when my WBCs, etc are low, and my Whites in the lower 2's, with ANC near 1.0 (bordering on Neutropenic), I'm a volcanic GI mess. Yes, Imodium etc is my best friend, but sometimes "a body's just got to do what a body's got to do"... and here's a few stories about that:

Life must go on, right?! My situation ain't gonna change, and myeloma will always be a part of my life. For real- this is my life from now on,  forever. So after my awful feelings from my steroid crash days subside, and my body can't possibly poop any more (since I'm not putting much in on those days), and the achy, punched in the stomach feelings subside, along with the on-edge I'll punch YOU too feelings ;) and the horrible fatigue, dizzy, crawly skin feelings subside, and I begin to feel somewhat better... I then let myself think about life outside my bathroom.

This week was a busy one with a beloved family member's passing and memorial service for him, a few days scheduled in my office to see students, my oncology status appointment, a wedding and a wedding shower. I was on my Revlimid one week break, so I tried to do all of these events, and I tried to eat whatever appealed to me, whenever it appealed to me. Well, that didn't go so well LOL, but you know what, I'm getting so I don't care about the repercussions, I'm just going for it when I feel ok (and see what happens!) HA! But try as I do to be "normal" and eat normal, o boy, do I get ambushed and ambushed BAD, even with "pre-gaming" with "shots" of Imodium. Truly this IS that fine line between HUMOR and TRAGEDY!!!!

So we went to my beloved Uncle's service and then to his house afterwards with our extended family. Lovely people, lovely memories, reminiscing about his life and how he deeply touched all of us. So wonderful to see everyone together from across the country! It was a positive uplifting event, as he was almost 91, had lived a full life and was "ready" to be with his beloved wife, who had passed several years ago. As always, I never eat before I leave the house for events. I have learned NOT to eat at events if they are NOT a quick driving distance to my home.. because when the angry volcano erupts, it really erupts! Imodium only works for so long, and like I've said, the body eventually's gotta do what the body must do... hello ridiculous Chew and Poo lifestyle forever.  And as I have posted before (sorry- not sorry :), my unlucky poo adventures continue on, and this event was NO different.

Wonderful deli food had been ordered, and I kept having to explain to everyone why I wasn't eating (myeloma is such an "invisible" cancer). It was an opulent display of delectable foods that I hadn't indulged in in a very looooong time. So guess what I finally did? Ffff it I thought, I'm just going to eat, and hope my pal Imodium "backs me up" ... haaa that pun just happened! So I ate. And we stayed and chatted. And I watched the clock knowing I'm sometimes safe for an hour or so. I also was very aware of the fact that we were about 40+ minutes from home.. but I thought I'd be fine, (always the eternal optimist), thinking I'm nearing the end of my chemo break, and surely Revlimid would be somewhat out of my system, and I could chance it. HA! I pushed my luck and stayed too long...

 Yummy!
 Yumm
 Yummm!!

Yep, I stayed too long and pushed my unlucky luck too far! Soon after we got on the freeway, I felt THOSE all too familiar GI signs. Uuuuggghhh!! I'm doomed! I blew it this time! Petal to the metal as I'm (safely flying) home on the freeway between 70-80 MPH. I'm realizing my GI situation is a looming disaster and I'm really getting desperate. Jim asked me if I'd like to stop at a restaurant to use a bathroom, and I barely breathed my reply of "NO, not possible"... " I won't even make it into the bathroom"... and just as I uttered this, WE CAME TO A FREEWAY DETOUR THAT WOULD TAKE US IN THE ABSOLUTE OPPOSITE DIRECTION OF OUR HOUSE! Seriously, I'm just "dying" at this point. I can hardly breathe, and I'm just thinking I am going to have a MAJOR GI disaster in the car. Note the "humor" and "tragedy" here!

This opposite direction detour abruptly leads us into several 5+ car pile ups, where stupid tailgaters had hit each other, and it's cars literally scattered and shattered all over! The freeway lanes we're in, are blocked and totally backed up! ... OMG, I'm just "dying". The volcano is very very angry at this point... I'm thinking how absolutley ridiculous my situation is and I'm never ever eating out ever again! Why meeeeee!!! This seriously takes my breath away and gives me anxiety just retelling the story.

FINALLY THE TRAFFIC begins to clear and I'm able to get off the South direction freeway and head North again. All the while, I'm thinking about what box, bag or "container" might be in the car that I can use as an emergency porta-pottie if I have to... FML, this can't really be happening to me. I try to have just a few hours of normalcy, and boom... my compromised immune system awakens the evil GI volcano.

I'm RACING home, now closer to 75-80 consistently, and making Jim and Alissa VERY nervous... but I had to be the driver (the super-focus helped), or I would be truly doomed. I just kept focusing on each familiar offramp, anticipating each one bringing me closer to OUR offramp, deep breathing, and clenching "those" muscles"!!!

Finally, we're off the freeway, me racing (safely lol) to our house. I make it to our driveway.. .but I have to wait a second, clench those muscles, suppress that volcano for the dash to my beloved bathroom...
Yes I made it... not a second too soon. Truly I had a GI angel that night! wow! Never Ever will I Ever put myself in that circumstance Ever Again! 

Here's a way too apropos picture of my beloved Uncle in his younger years. Can you even believe the irony of the picture my cousin posted:

Love you and miss you so much Uncle M
You were so kind, funny, caring, and so sharp witted.
Only one of you, and you are deeply treasured
and so very missed

And here we are 2009, just days before my 12.30.09
myeloma diagnosis


So after my freeway catastrophe drama, my GI system finally settled down early afternoon the next day, just in time for my monthly oncology appointment. And of course I didn't DARE eat before we left the house!

Here we go again. The news wasn't good. My myeloma numbers are up, my immune system is down. Which makes total sense. Which means the correlation between my compromised immune system and my volcanic, Chew and Poo GI, is a fact.

WBC's = 2.4 (low= why I feel yucky, fatigued, volcanic GI) 4 - 11 = normal range
M-Protein = 1.26 (up = bad) normal/remission = Zero
IgA= 1620 = (up = bad) 70 - 400 = normal range
ANC = 1.4 (low = bad) normal range= 1.8 - 7.7

And so, myeloma marches forward and I battle with focus on "quality" of life vs quantity. YES we talked about adding Velcade and/or other meds. NO I'm not brave yet to change/add new chemos. I fear worse/different, new unpredictable side effects. Yes my current side effects are awful, yucky and challenging. But they're fairly predictable and fairly manageable (lol, if I eat at home, I know to stay at home, or if I eat out local, I better never hit any traffic or accidents ever again!)

So I was a bit pissed off with this newsy reality check of my circumstances. By the time Jim and I left my appointment I was finally hungry again, so I said heck, F it, LET'S go EAT and pretend we're on a fun trip! It's a weird thing. I don't get excruciating cramps beforehand. And I can be volcanic and hungry at the same time. It just hits me FAST and I just I HAVE TO GO right then! So taking NO chances, I again pre-gamed with Imodium, and off we went to Islands restaurant close to home!

You know which one is mine :) 

You know which one is mine :)
But do you think I ate it all??
And where do you think I wound up afterwards,
a few hours later? Yep! I sure did :(
But it sure was yummy at the time, 
and I made it home just in time with NO problem! 

So that brings me to today- I attended a BEAUTIFUL wedding this evening. And I "pre-gamed" with Dex steroids. I wasn't sure after all my crazy GI emergencies this week that I would be ok there, so yes, I didn't eat all day, but brought soda crackers with me to the wedding. And yes, it was miles from my house, about a 20-30 min drive, assuming NO traffic or accidents LOL. So you know what I did... I didn't eat at first. I chatted it up with everyone at our table, watching them eat delicious food. Then I got pissed off again about my limitations. Thrilled I was able to attend for sure, thank you very much Dexamethasone steroids that allowed me to go and feel propped up... and are continuing to keep me up to 3:00am right now writing this much too long, much too detailed blog. So I decided to chance it tonight, and I ATE! Delicately though, just dry salad, no oils, mild mashed potatoes, and wonderful breads to Cork Me Up! So far so good, thank you very much steroids which I will take the 2nd half tomorrow, to attend my daughter's childhood friend's wedding shower. I FEAR THIS TIME TOMORROW, and into Monday and Tuesday as it's CRASH time... o well... go to Hell-o myeloma... I WANT TO LIVE LIFE AND PRETEND TO BE NORMAL! If just for a little bit.

Truly a magnificent facility,
beautiful bride and groom,
wonderful friends and neighbors.
So glad I went pretending to be normal,
even if just for a few hours!

The trees were stunning with the evening setting sun piercing through-
I felt so alive, peaceful and invigorated, lucky to be alive,
lucky to attend this beautiful event full of love and friendship


5 years ago today, I was still hospitalized
5 years ago today, I was still in a very small room, fighting for my life
5 years ago today, I couldn't breathe fresh air, or be surrounded in nature's beauty
5 years ago today, I couldn't even attempt to eat what I ate this month, even tho it "backfired"!
5 years ago today, I was surviving my high dose chemo and stem cell transplant
5 years ago today, I was a very different girl then today
5 years ago today, I was beaten up, but hopeful

Today, I am even more beaten up, and less hopeful
Today, tho, I was outside, among wonderful friends, breathing nature's fresh air, celebrating LIFE!


 Next month I will tell you about a possible 
bucket list plan my oncologist and I discussed,
so maybe, one day, I can do this...


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





10 comments:

  1. AnonymousJuly 26, 2015

    FUCK IT...Wow, your trip home after the memorial for your Uncle was funny, i'm still laughing at how you told it and I also felt the stress you must have been under... oh the everyday things we all take for granted. I am one of your "on the 5's" fan.. I keep checking.....Here is an update!! YIPPIE Skippy.. So, I read them and I laugh, I cry, I wish, I hope, I pray, I laugh again, I feel sad, I get mad, I smile, but most of all I get reminded that life is now, take nothing for granted. I find myself loving the different birds in my back yard, or taking time to listen to others better.... I am reminded....

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

    Talk to you soon, I love you

    ReplyDelete
    Replies
    1. Aww thanks my F- It friend for letting me know you enjoy my posts! Seriously, the THINGS we all take for granted... no matter our circumstances! Glad I spark your emotions and your appreciation of birds and nature :)
      Get out there and make a difference too! Thank you so much for commenting and letting me know I make a difference in lives with my posts :) xoxo

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  2. Julie, Julie, Julie...what are we gonna do with you? LOL! I really can't believe you made it home, and without a speeding ticket! (Now that would REALLY have been a disaster, if the officer delayed you any further. He certainly would have regretted that ticket!) I would be so much like you...choosing to take an Imodium, eat the food, and time my bathroom visit! Your food pictures look delicious...especially Islands!

    Let me know if your treatment regimen changes. I'm really wondering if something else might agree with you better. Lots of folks we know are having great success with Pomalyst. Has that been discussed for you?

    On the positive side, you have been able to take a few outings and work, which is always a good thing. Please don't ever lose hope...that's all we have to keep going! I recently read: "Carve a tunnel of hope through the dark mountain of disappointment." Praying for you, and the next steps to tame the beast! You can do it!

    XOXO Linda

    P.S. Can you give me your email address? Thanks!

    ReplyDelete
    Replies
    1. Hi sweet Linda Linda! Thank you for always checking in, and your fun and caring comments! As I was driving fast, I really did think about WHAT if I was STOPPED for a ticket... O my Gosh!!! I think I would have just kept driving and run into my house... gives me a stomach ache just thinking of that possibility!!! This truly was a life changing event, and I will be more careful and less smug next event!
      Yes, I am looking at other myeloma meds, and I need to really read all the side effects, and maybe get brave and try a new one... So happy EZ is doing so well! What a blessing for him and your beautiful family!
      Love your quote!!! and thank you for all your prayers of hope. Same right back at you and EZ :) and please write to me!!! Missy.Myeloma9@gmail.com
      love and hugs forever :) xoxo

      Delete
  3. AnonymousJuly 28, 2015

    Julie,
    I enjoy your posts so much. Your attitude is wonderful, and so is your writing technique. I look forward to reading many more.
    Wendy

    ReplyDelete
    Replies
    1. Hi Wendy! Thank you so much for your kind appreciation of my blog posts! I never know who's reading my ramblings, and I love hearing from my "audience" :) Thank you for appreciating my spontaneous, "tell it as it is" writing style. Let me know how myeloma has touched your life? Or how you found my blog? Thank you for stopping by and commenting Wendy :)

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  4. WOW my long time friend I see why you haven't emailed in a while. Get a laptop for the bathroom. Your story is just too funny, painful yet you made it. That's what's important. I sent you an updated email to your address with an update. We haven't seen each other in over 1 1/2 years. I've had my BA degree for over a year and lots of feeling's with that. I turned 50 in May. You my friend just have spunk, determination to live life and not ever let thing's stand in your way. Shoshauni is going to be a jr and has 5 colleges looking at her: promising. don't think John will get her :( I go back to work on the 12th. Hopefully we could chat or see one another. I really miss you, our talks and you are always in my prayers. Take care my friend and keep in touch.

    ReplyDelete
    Replies
    1. Hi Theresa!!! So glad you stopped by to catch up on my crazy status. And now you know where I am most of the time!!! LOL the bathroom!!! ugh! So happy for all your success and accomplishments and we will set a reunion date asap, close by, so I don't have to worry about the volcano sabotaging us ;) xoxo

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  5. Hi Julie,

    So I sat this morning and did a catch-up on some blog reading and cannot believe how the time has flown and how long it is since I have read your blog. You never fail to comment and keep in touch on my blog.

    I know it's not funny at all but I sat here reading about your anxious trip home and couldn't help laughing. You tell a good, detailed story. I kept thinking oh no....is there a flat tire story coming on top of all of this? Jimmy is having similar problems at the moment, I think due to high doze cortisone but he is far luckier than you in that he only goes twice a day. When he gets up and when he goes to bed. He is on some medication for this but it hasn't really made a difference.

    You are often in my thoughts when I try imagine you at home and with the horses (now it will be on the toilet haha). Stay strong, appreciate each day and don't ever change. You are such a breath of fresh air.

    Lots of love
    Viv

    ReplyDelete
    Replies
    1. Hi Viv, so glad my story made you laugh!!! There is so much irony and that line between tragedy and humor! Yes, most of us MMer's have GI issues from the meds and the MM itself. Sorry Jimmy is going thru it too. It's from the SCT side effects too. All the harsh treatments/intense chemo wreak havoc on our GI systems. Thank you Viv, for all your sweet comments and support. I'm off to visit your blog now too :) xoxo

      Delete

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.