One-Of-A-Kind

What happens when a boy hopes that someday he'll marry a one-of-a-kind girl?  Joe gets a wife that has a cancer that no one in the world has ever had the same way.  Haha!  I am finally feeling up to spending a few minutes blogging again so I thought I'd share a little about my one-of-a-kind cancer.

Neuro-endocrine tumors are not unusual.  They are actually (and THANKFULLY!!!!!) one of the most responsive types of cancer to treatment.  But mine...mine is not normal.  Normally you would find a tumor (hence the name) and then see where it may have spread.  I however, have no tumor.  They cannot find one.  They've looked and looked and still no tumor.  My cancer is all in my bone marrow (not the normal place for this!).  Being in the bone marrow is what led to my initial diagnosis of leukemia.  But after test after test and scan after scan, they realized it was not leukemia but this other type of cancer...just not like it would normally be seen.

One of my doctors (I have so many, I don't have cool names for them yet), said he spent literally hours looking for another case like mine from anywhere in the world and could not find one.  The doctors are still searching for a tumor (looking everywhere!), but are treating me as though they have already found it. 

So that's what happens when a boy wishes for a very special girl someday.  Moral of the story...be careful what you wish for...heehee...JUST KIDDING!

While I was in the hospital I was pretty hopped up on drugs and I literally do not remember almost a whole week...but during that week I do remember insisting that Joe take the kids to the fire department Christmas party to see Santa (since it's such a small group).  Here's the kids with Santa...Thank you for taking them Joe!

Here's the News We Got Today

Since my appointment at the hematologists at 9:45 this morning the following news has spread like wildfire, so I figured I would at least let everyone know as much as we do.

I had a bone marrow biopsy done on Monday (super duper painful by the way!  Dr. A said I have unusually hard bones...ha!).  I have had a total of 3 blood draws (from Dr A's office) and each one showed my hemoglobin's, white blood cells & platelets dropping.  Then during today's blood draw the lab testing my bone marrow called and we were told my bone marrow has abnormal cancerous cells.

They haven't identified a type yet and are still running more tests.  So, Dr A sent me to the hospital right away for CT scans of my chest, abdomen & pelvis to look for tumors as a possible cause of the cancerous cells.  He already called back and said the scans were all normal.  The next plan of action is that Dr A already called the Cleveland Clinic and has referred me up there.  I'm just waiting for a call from them to set up a first appointment.

I am still optmistic that since they have yet to pin-point exactly what type of cancer it is, that it will be an easy one to beat, especially through faith & prayers!
I would definitely appreciate any prayers and lots of good thoughts.  Thanks everyone!

Taking Over For Me

While my back has been getting worse over the last few weeks, Joe has really stepped up and been the most amazing husband and father ever!  He does all the housework, all the meal planning, grocery shopping, laundry (even washed a load or two of cloth diapers!), cooking, takes care of the kids, arranges for other people to watch the kids while he's at work, and so much more!  He is hands down the best husband and father I could ever ask for!  I am truly thankful for him!

But on top of all that he has even stepped up in the photo department.  He knows how much I love to take pictures of the kids and it has been hard for me to do it while laid up on the couch, or zonked out from meds, so he has taken over in that area too.  It really means a lot to me that he has picked up the slack with my camera because I don't want to miss a thing!

I thought I'd share a few of the great pictures he has taken of Will lately (I'll post pics of Julianna on another day), so you too can see how great he's doing!

I love my hubby!

I Guess Its My Turn

Ok, well it seems as though Our Ordinary Stories is going to become a means to keep folks updated on medical issues once again.  But I guess this time its my turn to have the issues.  Most family & friends know that I have been dealing with some back issues for the last several months.  Since Thanksgiving, things have gone downhill extremely fast.  I am pretty much in severe pain all day long every day.  It's gotten to the point where I can't even take care of Will & Julianna (they have been spending a lot of time at grandparents and at Aunt Erin's).

Monday, my pain got to the point where we pushed really hard to get me in for an MRI.  I am just so tired of hurting all the time and wanted some answers.  On Thursday evening my doctor called me back with the results, and things have just snowballed in the last 36 hours.  I have degenerative disc disease (arthritis in my back I guess) and a herniated/bulging disc.  They said this could be causing me some discomfort, but should not be causing me all the pain I am feeling.  Even the strongest pain meds I could be prescribed wear off within 2-3 hours.  My doctor then went on to drop some unexpected news that then led to all this craziness.

Disclaimer: I do not know a lot of information right now and could totally be screwing things up, but this is what Joe & I were told today.  The MRI also showed that I have red marrow reconversion in my back.  The explanation we were given is that the bone marrow in my back (which should be yellow in adults-mostly fatty) has reconverted back to red (what it is in children).  This can happen for about 800 different reasons, but most the of the top causes are not good ones. 

So Joe went into his "get things done" mode and moved things along pretty quickly for us.  My doctor was kind of dragging her feet on doing much of anything until next week (since today was Friday), but Joe was great and today I got x-rays of my hips and legs (another area of extreme pain when my back is bad), I had a crud load of blood work drawn and next week I have appointments to see a back specialist about the disc issues and a hematologist/oncologist for the other issue...got the call this afternoon that that appointment will include a bone marrow biopsy...fun.

So needless to say, I'm freaking out just a little bit.  Some scary words were thrown around by my doctor (whom will most likely not be my doctor for much longer...she admitted she had to google some of what she was explaining to us! Seriously????)  I would love if everyone could say some extra prayers for me and for Joe, who is now doing ALL of our household/parenting responsibilities on his own in addition to working, and for my kiddos who are not all that happy with being shuffled around houses since mommy can't take care of them.