This is the Beginning

I'm not really sure where to start with this, but I know I need to write it.  I want you all to know what is going on, it's just hard to say.  I think I will start at the beginning.

I've had a rash for a very long time.  We're talking 6, 7, 8 years here.  I'm not going to sit here and defend why I have lived with it this long.  I will say that it seemed harmless, looked just like eczema (that I have had before) and was not very bothersome.  I did see a couple different doctors about in the past and they both said it was eczema.  I have tried steroids on it and it just didn't want to go away.  But I never followed up, so the rash just sat there.  I kept thinking I would see a dermatologist about it, but it never seemed that important, so I put it off. 


At the beginning of December I did finally see a dermatologist.  We tried a stronger steroid cream for 2 weeks and it just seemed to make the rash angry, so she decided to do a biopsy.  That brings us to Tuesday.

I went to get the biopsy results from Dr. S (dermatologist) and the first thing she said was that it was a good thing we did a biopsy.  She held a two page pathology report in her hand.  (Bear with me on the medical jargon.)  Basically the rash was full of abnormal T-cells which is representative of lymphoma.  Yes, lymphoma.  She explained the pathology report in more detail and did a more thorough exam of all of my skin to be sure I didn't have any other spot on my body, which I don't.  She also checked me for swollen lymph nodes, which I had none.  Finally, I had some blood drawn to see if the lymphoma was in my blood and a chest x-ray to be sure the lymph nodes were not enlarged in my chest. 

As I drove home I finally let it sink in a little.  I thought, the doctor just told me that I have lymphoma...cancer.  It was very hard to control the tears, but I didn't want to come home to Shad looking like I had been crying.  I didn't want to scare him.  But I could tell by the way he looked at me when I walked in the door that I couldn't hide the fear on my face even if it wasn't red from crying.  All I could say was, "It's not great."

I am so thankful for Shad and his calm, reasonable demeanor.  He just hugged me and waited for me to tell him what I had heard.  And even after I explained it all to him, he didn't freak out.  I needed that. 

Waiting to hear about my blood work and x-ray was really hard.  I was basically waiting to hear if I had lymphoma just in a localized spot on my skin which would require radiation treatment or if it was in my blood which would require chemotherapy.  It was a very long day and night.  I didn't sleep very well and I don't think Shad did either.  Actually, no one slept very well, all three kids woke at some time during the night (they had no idea what was going on).  Needless to say, it was a rough night.

Wednesday morning we awoke to a snow day, no school.  It was a welcomed distraction, I'll tell you.  I really did not want to be alone with my thoughts.  Just as we were gearing up to go out and play in the snow, my phone rang.  All I heard was, "your blood work is normal and chest x-ray is clear.  There are no signs of systemic lymphoma."  She said more about seeing an oncologist, but I only barely heard it.  My head was screaming "thank you, God, it's not in my blood!" 

The next afternoon (yesterday) I had an appointment to see the oncologist, Dr. H.  I was so nervous all day long, my guts were twisted in knots and I could barely eat.  I busied myself all day to avoid thinking and dreading the appointment.  Even though the dermatologist said it looked good, I still needed to hear from the official cancer doctor.  I even went grocery shopping just to stay busy.  Shad's dad came over to watch Bethany while Shad and I went to see Dr. H.

He was an interesting little man.  The first thing we both noticed were his long fingernails, on only one hand.  Kind of odd.  But then I have worked with many doctors and some of them have some strange quirks about them.  Hey, don't we all?  Fingernails aside, Dr. H knew his stuff and was very kind.  After getting acquainted with Shad and I, he sat down with the pathology report and got down to business.  He read it out loud to us and explained every detail of it.  Some of it went over my head, but I got the gist.  There was some speculation as to what type of lymphoma it actually is, so he called the pathologist that read the biopsy, put him on speaker phone, and they discussed it right there in front of us.  It was quite reassuring hearing them both weigh in on what they thought.  In the end they both agreed that I have a disease called mycosis fungoides.  It is a fairly treatable type of lymphoma and is characterized by the type of T-cell abnormalities that are apparent.  (I sound pretty smart, huh?)  Dr. H said that since it appears to be localized to this area on my skin, we should be able to cure it with radiation therapy.  Yes, he said cure. 

Dr. H also talked to the radiation/oncologist that he is referring me to (Dr. L), on speaker phone.  They both agreed that a superficial, meaning on the surface, radiation therapy would be best.  This would be as opposed to a deep radiation therapy for something like an organ tumor or to treat bone cancer.  It should only affect my skin.  Praise God, again!  They talked about another patient who has a similar type of skin surface lymphoma on his eye lid and that they treated him the same way and his cancer is pretty well gone.  His eye lid?!  Hey at least mine is on my backside where you can't see it.  So I am waiting to hear from Dr. L's office to call me to set up a consultation appointment and start this radiation.  You know, it's funny, when I thought it was eczema, I could ignore it.  Now that I know it's lymphoma, I just want it gone!

So how do I feel about all of this?  Well, it's scary, nerve wracking and makes me a little anxious.  It seems a little surreal still.  But, I am doing way better after talking with Dr. H yesterday.  He answered a lot of the really scary questions I had in the back of my mind.  Being told you have cancer brings up a lot of thoughts you just never want to think.  Am I going to have chemotherapy that is going to make my hair fall out and make me super sick?  Will I have to be hospitalized?  Is this going to be painful?  Will I have to have a bone marrow biopsy?  Will I get to see my kids grown up?  Am I going to have to tell Shad it's OK to marry again?  (that one really kills me)  Are my kids going to watch me die?  Is there cancer coursing through my veins and I don't even know it?  Is that tiny red blemish on my arm cancer too?  Oh my gosh, do I need to shave off all my the hair on my body to be sure I don't have any other spots?  Can I even do this?

Last Thursday, I was praying for peace as I waited for the biopsy results.  God showed me a verse that I realize now is going to be what gets me through all of this:

2 Chronicles 20:17

You will not have to fight this battle.  Take up your positions; stand firm and see the deliverance the Lord will give you, O Judah and Jerusalem.  Do not be afraid; do not be discouraged.  Go out and face them tomorrow, and the Lord will be with you.

That's my hope, right there.  I do not have to fight this battle.  Honestly, I know God has been fighting this battle for the last 8 years.  This rash has been on my body for that long and has never spread.  It's been in the same spot all this time.  Tell me God hasn't been fighting this battle already.  It gives me chills to even think of it.  So I am going out to face this cancer and I am going to try really hard to not be afraid or discouraged.  It's not easy even when I have His promise staring me in the face.  I am afraid.  But I am going to ask God to help me to trust Him and help me to not be afraid.  I am asking you all to pray that for me also, no matter what happens.  Whether it is cured with radiation, it moves to my blood or lymph nodes and I have to have chemo to get rid of it and even if it doesn't go away. 

I plan to blog through all of this.  I will do my best to keep you all up to date as things happen.  The good, the bad and the ugly.  I thank you all in advance for your kind words of encouragement and for your prayers.  Please don't feel weird the next time you see me.  It's OK to ask me how I'm doing, you can even say the C word to me.  A hug would be nice too.  I may tear up, but don't be afraid.

By the way, we have told the kids.  They knew that I had a biopsy because it was during Christmas break and they were with me.  We told them that my rash has a sickness that needs to be treated with a special treatment.  That's all they need to know for now.  We'll tell them more as it's necessary. 

So that's the story of my rash.


Side Note:  I just wanted to say that I hold no ill will toward my family doctor.  I never had any reason to doubt that this rash was eczema.  Mycosis fungoides is commonly mistaken for eczema.  Heck, I thought it was eczema, too.  Not to mention, I am the one that never followed up when it didn't go away.  For all he knows, the rash went away a long time ago.  And, really, it wouldn't have mattered.  If they would have biopsied this 8 years ago, the diagnosis would be the same, the rash was just a little smaller.  Also, I know that God's timing is always perfect.  We found this at exactly the right time.  I can't help but think how my life could be different now if we had found this 7 or 8 years ago.  Would I even have Josh?  I don't know.