What a week!

This illness is the craziest thing I have ever been through.  Each day, I wonder, “How can I feel so good when I am this ill?”  When I feel like this I generally contact my doctor’s office at Moore’s Cancer Center.  They always reply promptly with reassurance and words to soothe.   I am told regularly to continue with what I am already doing: eat healthy, whole food, get lots of rest and to avoid people who are sick (this is due to my low white blood cell count).  I have not had a cold in years, knock on wood.   The staff at the Bone Marrow Transplant office are the most amazing team of people.    Now, do not worry, I am not getting a BMT.  I just find myself obsessing about them sometimes.   Apparently, there are many different kinds of transplants used in the fight against these disorders of the blood and lymphatic systems. 

Another crazy thing … this week has been amazing but I have found myself in tears everyday except for today.  (Which hey, is not over yet, so there is still time :)  Today, we celebrated my sweet nephew’s 5th Birthday, so there was lots of laughter and cake.  Who can cry when there is cake? A lot of cake!

I recently visited a support group page on FB.  It is designed for people battling Lymphoma as well as for Survivors, Caregivers, Friends and Family of patients.   I have found so much encouragement in reading the stories of survivors who have battled this illness.  I noticed though when reading through, that those who are sharing seem to know specifically which strain of the over 70+ kinds of Non-Hodgkin’s Lymphoma (NHL), they have.  I realized I had some research to do.  And here, I thought I had been a good advocate for myself!

Now, here is where it gets interesting (goes left).  I love the internet but sometimes too much available information can be a bad thing.  I started to do some research to self-diagnose, BAD IDEA!   I determined (with my extensive medical background, NOT)  that I had a rare strain of NHL that I had not never heard of before.  This specific strain has a survival rate of only 7-20 years.  All of a sudden, this was real.  I broke down as I realized that I have something living inside of me that can significantly shorten my life.   I cried for hours.  It was quite the pity party, I am sure you can imagine.

A list of everything I’d like to accomplish before I leave this magnificent earth ran through my mind and my broken heart.  I wondered if I could find love … who would possibly want a sick girl?   Shortly, after I was diagnosed my ex-boyfriend broke-up with me.  I am convinced that this was in a large part due to his fear.  I thought, now I would be alone for the few remaining years of my life.  I told you it was a grand party of self-pity! 

BTW, I don't have the kind of Lymphoma, I was reading about.

 My week got better.   On Wednesday I was interviewed for a local women’s magazine.  They are profiling women in fitness.  I am one of the women chosen for this honor!   Although I was feeling stronger after the interview (I love sharing my passion for fitness) I still found myself in tears on my ride to work on Thursday.   I am so grateful to work at an amazing women’s gym.   I am surrounded by strong, supportive women.  I was able to let out all of my anxiety about this illness.  I am so blessed, they understand about the mixed emotions I am feeling. More than one of them have offered me any kind of support they can offer. Rides to the doctor, an ear if I should need, etc. I'm not even their family and they are so generous!

For one thing, I am struggling with anger.  I am angry about a few things.  Right now it is mostly about the chicken $#%+ way my ex chose to end things with me.   I realized that he is not someone who would be strong enough for me during my journey.  Now I've chosen to believe he never loved me.  I am sure I will let go of this anger at some point but right now I am mad!

On Thursday after letting go of some of my anger, I flipped the script.  After I finished training two of my inspiring clients, I decided that I would stay and do my own workout.  The gym really is therapy for me.  I am thankful that I have this amazing place to do my own training.  On Friday, after finishing with clients I hit the weights again!  Feeling stronger and more optimistic I headed home.    On my ride home I discovered the most talented nail technician!   Is it wrong that I do not want to share this information?  I just really do not want her to get too booked to see me.  For now I will say thank you Jesus!  You will have to stay tuned if you want to learn who this talent is!  I know I cannot possibly hold such a secret for too long!  After all I do believe that as women we really do need to support one another in success!

The Holidays are here and there is so much to be thankful for!   I do not go back to my Oncologist until December.  I will do my best to keep my spirits lifted.  In January I have an appointment at the Cancer Center again.  I am convinced  that they are as dumbfounded as me about how I can be such a vision of strength and health even though I have been  diagnosed with this illness. I’m pretty sure they will likely want to test my Super-Hero Blood as part of some clinical trial!  OK, maybe this isn’t the case, but I do enjoy my Super-Hero status very much.  Hey, this is MY STORY!

How it began...

 On October 25, 2014, one year ago today. My boyfriend at the time, Donny, came to visit me in my hometown of El Centro, CA.  He brought along his son, and we made plans to go to a newly opened trampoline spot, called Ricochet.  Although I was 50 years old at the time, I am a child at heart and I had been wanting to go to Ricochet, once I learned what it was, and that it was open. (I literally drove by it every day while they were preparing)  I worked just up the road. 

We arrived at Ricochet and signed all of the waivers and paid the fees.  We were given a grace period, so that we wouldn’t miss a minute of our 2 hour jumping time. But, we could start jumping right away even though our “time” had not officially begun.  We were so excited and having so much fun, that I realized we needed pictures.  Donny ran out to retrieve his camera from his truck.  He was literally only gone for like a minute when I went down as I attempted to land from a jump.

Both of my feet began to swell immediately.  Donny returned, camera in tow, a smile on his face only to find me sitting on the trampoline.  Our jump time had not even started, and I was totally out.  Ugh!  So disappointing.  I crawled, in a rather graceful fashion of course, to the side where I was provide a chair, some ice and Ace bandages.  Not wanting to be a Party-Pooper, I decided I would  participate by video taping my boyfriend and his son.  Sorry, this is really difficult for me, I had to take a break because the tears are rolling down my face. 

After the boys were finished and had put on their shoes, Donny carried me out of the club because I could not put any pressure on my feet.  I just have to say, what an amazing man Donny is!  He literally carried me everywhere for the next few weeks.  And for months as I healed he helped to keep me mobile and comfortable.  He literally let me lean on him.  8-)

In November I went to a doctor for something other than my feet.   They didn’t find anything unusual, but after I explained how I sprained (so I thought) both my feet in October they took X-rays and sent me to an Orthopedic Surgeon.  It turns out I had fractured bones in both feet.  The Orthopedic doctor said that I should have been booted back in October but amazingly enough  it looked like I was healing just fine on my own.

Since I was finally at the doctors, my Nurse-Practitioner( NP), wanted to give me a thorough once over.  I went through the normal poking and prodding, and then they sent me off to the Lab-Pires (could they take anymore blood?).  The results of the blood panel showed that I had a lowered white blood cell count and an elevated protein level.  The protein level was only slightly elevated, and I was not concerned because as a Figure Competitor, I need my lean protein!   I assumed the low white count was nothing because I felt perfectly fine.

My Nurse Practitioner ordered tests two more times, with the same results.  She then referred me to a

Hematologist / Oncologist.  I was perplexed, but I went.  The doctor there said it is highly likely there is, absolutely, nothing wrong with me.  I liked the sound of that!  He ordered a BAZILLION tests. They all came back negative, except for the test for a protein called an "M" Protein.  The state of this elevated protein is a condition called, MGUS.  I know, I said the same...WHAT is MGUS?!

MGUS is a Monoclonal Gammopathy of Unknown Significance.  It is almost always a benign condition even though it requires monitoring, every 3-6 months, for the duration of my life.  Because of this MGUS diagnosis, my doctor suggested he give me a Bone-Marrow Biopsy to have a baseline because MGUS is often a precursor to a deadly Cancer called Multiple Myeloma.  I agreed to the biopsy.

My first biopsy was scheduled for July 27, 2015.  The amazing Donny made the 3 ½ hour drive down to El Centro for the weekend so that he could be with me for my test that Monday.   Due to an insurance authorization issue, there was no test.  They rescheduled about a month later to August 17.  This happened to be mine and Donny’s one year anniversary.  Romantic huh?

Of course he made the drive down for this test also.  He really was so supportive.  On the day of the biopsy, he really struggled to be there with me the whole time.  This was a major challenge for him because he does not do well with medical procedures.   This touched me so deeply.  I felt so blessed.   It takes a while to get results, and so they scheduled an appointment for me to review them on September 14, 2015.  Six days after my 51st birthday.   I was not really nervous because I was certain that there was nothing wrong with me.   This is likely why the news that I was showing positive for B-Cell Lymphoma did not sink in for me.

It took me a while.   I have B-cell Lymphoma?   My doctor was pretty sure that I would not need treatment at this time which confused me further.  Why wouldn’t I get treatment if I have Cancer?  He gave me a referral to a Blood Cancer Specialist at The Moores Cancer Center on the UCSD campus, in La Jolla, CA.    This appointment was on September 23, which happens to be my dad’s birthday.  Although he passed away in 2006, I know that he is with me, and I can feel his love always.

My doctor at Moores, was amazed at how healthy I am.  I have absolutely NO SYMPTOMS of this illness!  He even asked me about some fitness tips...8-)  My squeamish, sweet boyfriend was in the hallway passing out (literally) at the thought of bone-marrow...It's not funny, but the sweetness makes me laugh every time I think of it.

I left that doctor’s appointment with a long list of tests that were required to create a complete baseline.  I have given more blood than I knew I had, had skeletal surveys, and a CT-Scan.  My knowledge base of medical lingo is growing quite extensive.  The CT- Scan was the most challenging.  Drinking down 44 ounces of an oddly-sweet, chemical drink … yummy.  NOT!  The worst part is that the speed at which you can finish the stuff (44 oz) determines when your test begins.  I found that if I waited too long in between the drinks, it made a lot harder to take another drink.

When all of my tests were done, I called the Cancer Center.  Since they received everything they needed, they scheduled my appointment 11 days earlier than it was originally scheduled.  I was scared now.  It felt too real, and now we were going to discuss possible treatments.  I still felt like the healthy woman that went to the doctors just to get a check-up.

As it turned out, the course of treatment recommended at this time

is, "WATCH and WAIT"...  This is a course of action taken with a slow-growing (INDOLENT) Cancer.  It

has been one month and 11 days since I was diagnosed with B-cell Lymphoma.  I intend to fight this, in whichever way I need to do so. I have some really great support on my side.  I no longer have Donny to hold my hand, but I know he wishes me well.  He and his son were even going to shave their heads, in solidarity, if I have to have Chemotherapy down the road. 

My long-time, true-blue sister/friend, Michele, who sticks with me even when I frustrate her, has agreed to accompany me should I ever need her to do that. (oh, I'm gonna cry again) We are both kind of tough/sensitive girls...It's hard to explain...8-)

My next set of tests starts in December and winds up in January.  I hope I get the same good news!

Say some prayers for me if you think of it.  I will appreciate them greatly!

In this Blog, I will take you on this journey with me.  I'm going to continue to train and transform.  I will be back on the stage in 2016 in one of my sparkly creations!

And, I'm also going to show you that you don't have to lay-down for this monster! My GOD is BIGGER!

In the end, I'm coming out with a story that I can't even imagine.  Hang on and ride with me!

Until my next post... https://youtu.be/weRPETraUeo