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

Sunday, July 22, 2012

Of Unsuccessful Celebrations

Seriously............... !!!!
2012 Vacation (anniversary) celebration fail :/

July 2010:  2 years ago I was pitifully and painfully languishing in isolation at City of Hope Hospital battling for my life... not knowing the outcome of my high dose Melphalan chemo and Autologous stem cell transplant.
Rereading my postings from July 2010 is a very powerful reminder to self of my "then"...
How challenged beyond challenged I was then-
How I felt more awful than awful then-
And how then, I was a changed girl mentally, confronting and processing serious life and death issues.

So fast forward the healing clock 2 years-
Time has passed and I have healed in many ways and remain in remission per recent blood tests!
Hence our 2012 "Bucket list" planning begins...

 First stop: Hawaii !

 I saw this trip as a wonderfully symbolic way to celebrate life, my 2 year Myeloma remission and mark my July 5 Autologous stem cell transplant:
Inside and hospitalized then,
Outside and free to play now!
Hawaii here we come :)

July 4, 2012 we landed in Hawaii, ready for daily doses of salt water therapy, sandy relaxation and liquid refreshment!
I was so looking forward to more than a week of NO challenges, ALL fun and frivolity, DAILY soaking in the amazing turquoise water, floating with an occasional sea turtle, and laughing and playing carefree non stop!

Well Hello Reality-

 Suddenly, before I even hit the beach, drank an island drink or even had a chance to get sunburned... I had a rude and all too familiar July 2010 reenactment!
I suddenly started not feeling well!!!
It crept in with killer headaches; and I mean super intense headaches (which I rarely get even mildly), so I knew something bad was up.
Then came the scratchy throat-
Then came the ouchy-achy skin and all over lethargy...

And BOOM, as if the cancer-gods were laughing at me... sending me back to July 2010, I was isolated in my Hawaiian hotel room sicker than sick with a fever higher than high.
Seriously, I could not believe this was happening to me!
I know my body's signals.
And I knew something bad was brewing... I tried to mentally will it away, Tylenol - Advil it away, turquoise blue water it away, lounge chair on the beach it away... to no avail.

Sadly, I was getting something and getting something big :(
Thumbs up, faking it lol

In the middle of all this everyone else is having an absolute blast. Tanning, swimming, floating in tubes with turtles, inhaling tropical drinks, lounging by the pool, sunning on the sand, reading, playing, shopping, snorkeling, parasailing, touring around, eating, drinking, partying, meeting fun people from all over the world... and me, I'm feeling more awful by the moment.


And after trying to pretend I would be ok, I bit the dust, 
rather bit the sand,
rather fell into the hotel room bed and stayed there... 
for a day or two or three...
At least it was a room with a fairly nice view, 
15th floor with a torturously beautiful view 

And so... there went my July 2012 anniversary celebration in paradise, ironically feeling like I was right back at City of Hope Hospital 5th floor, inside looking out...

Seriously, I still cannot believe how sick I got, how high my fever was and how much I was not able to do while in Hawaii. But to be fair, periodically I was able to drag my sorry self out of the room every other day, fever, headache, sneezing, coughing and all, achy skin, and all.
I was able to semi enjoy a day or two in the water, a drink or two by the pool, Duke's famous buffet, Duke's sunset serenade concerts, and a brief walk around town before I collapsed back in the room, while my crew partied and played without me :(

(Don't get excited for me,
 it's only a non-alcoholic fruit smoothie)

City of Hope look-alike with palm trees!

And for the final ironic torture- 
If being so sick wasn't enough-
On our last day before before our flight, 
the last day I could have enjoyed the beach since my fever had finally subsided...
Waikiki Beach is invaded with stinkn Jelly Fish!!!!!!!!!!
Seriously... all I can do is laugh at the ridiculous ironies in my life

Until next time...
Paradise lost on me 

And here I am, headed back to work, and I am still not feeling fully well.

I forgot to mention... my fever was so high I grew this crazy little tumor on my inside cheek that I had to have surgically removed last week on the advice of my oncologist.

Biopsy results due in a week...

JULY 28 UPDATE BIOPSY RESULTS ARE IN:

FINAL PATHOLOGIC DIAGNOSIS
MUCOSA, BIOPSY:
- ULCERATED SQUAMOUS MUCOSA WITH UNDERLYING SPINDLE CELL PROLIFERATION, MOST COMPATIBLE WITH FIBROMA. 
- SPECIAL STAIN S100 ONLY SHOWS FOCAL NON-SPECIFIC STAINING AND IS INTERPRETED TO BE NEGATIVE AND NON-DIAGNOSTIC OF NEURAL TUMOR.

===================================
WHOLLY COW!!!  what in the world is going on with my system!!!
From what I read about ULCERATED SQUAMOUS MUCOSA WITH UNDERLYING SPINDLE CELL PROLIFERATION.... that's not exactly a good thing... 

WhatEver....... at least it was BENIGN !!!



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5 comments:

  1. LoveyJuly 23, 2012

    Julie, my heart is racing just reading this. How frightened were you? Did you hit the Emergency Room? Do you think you brought the virus with you or caught something on the plane? I'm so sorry your vacation was ruined.
    Lovey

    ReplyDelete
  2. LindaJuly 23, 2012

    Oh no...so very sorry! Nothing is more miserable than feeling miserable on a vacation away from home. Brings back memories of a trip my hubby planned for us to fly to St. Kitts for my 50th birthday. The day we were leaving I started running a fever, got an earache, and a suspected sinus infection. I left the doctor's office in an unexpected snowstorm in late February, after receiving an injection in each "hip". Thought my head would explode from the pressure as we descended, couldn't even taste anything of the delicious food being offered, and slept on the beach under an umbrella. However, I did get my first massage which definitely helped me feel better. I think you deserve one after what you've been through! Praying your biopsy is negative and that you can go back to Hawaii one day when you are feeling better. At least you had a nice view! We love Maui and Kauai! Just paradise...

    ReplyDelete
  3. tim's wifeJuly 24, 2012

    Oh that is awful. I'm so sorry to hear this. Nothing to do but plan a do-over somewhere. Need to be careful with high fevers, Julie. Sepsis is always a threat when you're immunocompromised. Feel better!

    ReplyDelete
  4. ronJuly 29, 2012

    Julie,Glad it was benign.I know exactly where you were in
    hawaii and sorry you were so sick>I have never seen jelly-fish there!When you say talk to people from all over the
    world,I can`t think of anyone better at bringing them out than you.Hope you can go back soon and make up for this trip.
    But golly it is so much better than two years ago!
    Ron

    ReplyDelete
  5. UnknownAugust 22, 2012

    Hi Julie! I read your comment on Cassie's blogpost. So are you now OFF chemo?!?! I totally relate to this post. My first Chrismas post tandem-SCT I found myself taking a two hour ambulance ride which left me to watch my kids open up their presents via Skype.

    Keep dominating your journey and keep me posted how things go from here on out! I still have 22 months of maintenance to go!! :P

    ReplyDelete

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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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.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.