There is change in the air...

in my last post I eluded to changes on the horizon...see in March, we were worn out...three months of constant doctor visits with no answers, just more appointments and constant pain and tons of pain pills...I now call the Rheumatologist the "Pill Pusher"...and I have an Oncologist that says my low White Blood Count might never come up....we needed a new focus...

So after two years of reading these "hippy" books, we finally put them into action...vegetarianism, juicing, herbal supplements, reducing carbonation, caffeine and sugar....and after a month, I feel better, I put the pain pills away, after four weeks of my White Blood Count dropping in February, it finally jumped up in March...I call this "hippy" because that's what my Oncologist called me when I told him I was making these changes.  He also told me these changes were not making any difference in my White Blood Count.  Many people ask me why I stay with him...I think its a challenge...I may never change his view point, but I think now I'm on a mission to make both he and my Rheumatologist both realize that they can't treat all patients the same.  

Unfortunately, his patients are getting younger.  As I would sit in the waiting room or the chemo room, I would hear the elderly patients talking to each other and they were so resigned saying, "Well, we'll give this a try..." and the unspoken sentence was, "if not, I've lived my life, and it's my time".  But with four of my high school classmates fighting cancer alongside me, we are saying, "We have soccer practice after chemo", or "I have to make it to Honor Roll tonight for my daughter".  We aren't resigned to anything except beating this, and the effects that chemo will have on our bodies.  We are fighters, and we will do what it takes to get back the lives that we had before.  We need doctors who will think outside the box - let's talk about nutrition, herbal supplements, physical therapy, mental health.  Once the prescription pad doesn't work, let's put it away...

I enjoy learning new things to help my accounting clients.  Many times, I hear about new strategies, and although I may not be an expert on the topic, I can refer my client to someone who is.  This does not threaten me, I want what is best for my client...I'm hoping that one day, my Oncologist can see that some "out of the box" techniques could really benefit his patients.  He doesn't have to embrace them, but he could recommend them...especially for his patients who are rushing from tumbling to school to soccer practice on the non-chemo days...

Getting back to Laughing...

I know I haven't written in a while, and quite frankly there are a bunch of things swirling around in this messed up brain, so I'm going to have to focus on one thing at a time....maybe I'll start with mental health - THAT's always a crowd pleaser...

So I officially finished cancer treatment in June 2011, and from June to December I was in some euphoric state - I loved and appreciated every moment of life.  I didn't have a care or worry in the world.  I felt invincible for beating cancer.  I posted all of these adorable signs on my blog from pinterest talking about my new outlook on life...and at the time I meant each and every word.  I wasn't being fake or phony - that was how I truly felt - you will get nothing but honesty but from me...I just can't promise that my feelings won't change...

So December hits and so does pain, excruciating pain and my relationship with a Rheumatologist is born - her job is to take these auto-immune symptoms and diagnose an auto-immune disease - not exactly what I wanted for Christmas....January...5 days in the hospital for viral meningitis...February...my children see me carried unconscious out of my house on a stretcher after a seizure and now by law I am prohibited from driving until August...we've got a long hot summer ahead....

I have to give it to my husband....chemo was rough....but the depression that hit in January and February was nightmarish.  I was giving Whitney Houston a run for her money...and I REALLY fought going back on anxiety and depression meds.  I thought those were a thing of the past, I wanted that euphoric post-cancer state back. Luckily the Nurse Practitioner at the Psychiatrist's office who treated me for years before cancer didn't give up on me...That hysterical crying message on her voicemail probably helped too...

So now I am back on the meds...and things are settling down....The mid-day and pre-bedtime cry fests have ceased.  I think Shane has relaxed knowing that I am home alone with 5 different prescription pain killers...and most importantly it has allowed me to step back and gain a little perspective into this whole messy cycle of doctors we are in again....but that is in the next post....I can only bore you for so long....

I am getting back to laughing....I hope you never stopped...

Crazy Train...

Last night Morgan tells me, "Mommy, we don't have anymore conditioner in this bottle.  The next person is going to need some"...Wait did she just do something caring and responsible for the NEXT person???  Clearly she thinks it's going to be me, and she realizes I'm on the edge...

Now there's not much that I can control these days, it's not like I can hop in the family Econoline van and run to corner drugstore for that conditioner...but there ARE certain things under my control....

namely, the shampoo, conditioners and lotions that I have stolen ridiculously taken from every hotel room I have ever stayed in....I actually tip the hotel cleaning staff in hopes that they leave a fresh stash of precious hotel toiletries - I should probably discuss that with my therapist...do I take them for my guest bathroom??  hell no, we don't have guests!  Once in a while I pull one out when we really are out of shampoo and no one was as kind as Morgan and notified me ahead of time...

but today, I took control...of something....

yep, I emptied three hotel conditioners into a 3oz TSA approved travel size bottle...feel free to join me anytime on the CRAZY TRAIN.... but at least my daughter will have conditioner...

Super Moms - Oh How I Love You...

Morgan is looking over my shoulder and she just asked, "Are you doing something for Laugh Out Loud?".  When I said yes, she went back to watching Legally Blond (some kid version) on Daddy's IPad...she can't be bothered with me...

So I promised you a non-medical post.  You may have figured by now that I'm a pretty independent, self-sufficient, not asking for help kinda' girl...then some crappy things like Cancer, Meningitis and Seizures happen, and whether I like it or not, I have to actually ASK for help - AAACK!

So last Friday night one of Morgan's friend invited her to sleep over.  When friend's mom came to pick up Morgan she casually mentioned, "Oh, I'm going to take them shopping for "Twin Day".  Imagine me...the deer in headlights look...."Oh, twin day???  Trying not to look TOTALLY ignorant.   She explains that on Friday for a charge of $2, children can dress alike.  By this point, I am practically hugging the mom and shoving all the cash from my wallet in her hand...she has saved TWIN DAY!  I will forever love this woman!

Of course since Morgan is sleeping out, Avery must have a friend sleep over.  Who wrote this rule?  Because I would like to hurt them...and by hurt, I mean MAUL.... What happened to a quiet night at home with Mom and Dad?  Even curling up with us in bed?  But NOOOOO, MUST HAVE SLEEPOVER.  Luckily, we find an available friend.  For Avery it's pretty easy because there is a group of girls that have been together for a while, so getting one of the "quints" is a sure bet.

Now thanks to Morgan's friend's mom, I get to look like super mom (but I fessed up to all involved moms, especially Super Mom).  So a few texts later and the "LSU Quints" are born.  No way this group of 5 could be split up - not happening...

So for all of the Super Moms out there....You Rock!  Feel free to save my day anytime!!!

blah, blah, blah...

Got a  call from the Rheum Tuesday morning before my 1 pm appt.  Turns out my White Blood Count was 1.7 last week (lowest # in acceptable range is 4.5), they figured it was an error, so they wanted to re-check before my appt.  I practically pulled my neighbor Anna Lisa out of bed and she brought me to the office.  WBC today was 1.4 - guess it wasn't an error.

Rheum has no Auto-Immune Disease diagnosis.  There are a lot of symptoms, but nothing definitive on the blood work.  Only good news today - STRONGER DRUGS for the arthritis pain!

She called my Oncologist with the WBC news who seems "unconcerned"...her word, not mine.  When Shane kind of cornered her for some kind of "something"...she said she thinks the decreasing WBC is the root of the problem...now just to find out why....

once again..back to locking all of my doctors back in the padded cell until they talk this out...

Since I had my EEG on Monday and I'm to the point of needing some serious anxiety and depression meds, I'm trying to demand an appt with my neurologist for this week (he doesn't want me taking anything that will mess with my head, but he hasn't seen the mess that I have become over the last two weeks).   Plus there was some talk that the seizure meds might lower might WBC, I want to see if the meds typically lower the WBC this much...As luck would have it, Dr. Olson, my Neurologist RETURNED my call - major points for him!  He gave me the approval for some mind altering drugs (just wants me to stay away from a few - I can totally handle that) and he is NOT taking the blame, or rather letting Topamax take the blame for dropping my WBC into the "bubble level".  During chemo when it hit 1.0 and below I was ordered home to stay as isolated from everyone as possible and I was put on an antibiotic as a proactive measure - this ain't my first rodeo.  My Neuro (who specializes in Cancer patients) mentions that he thinks I have either an Oncology issue or a Rheumatology issue - ding ding.  Too bad one doctor can't find anything and the other is "unconcerned".

I was fired up last week.  I even called the Oncologist to get an explanation about why he was "unconcerned".  His nurse called me back...laughing....explaining that Doc didn't want to doctor me to death, and he thinks that the low WBC is bc of Chemo and he can do weekly blood work if I want him too....SO not the point...If you remember, on the last two PET scans, I had two spots glowing in my Bone marrow.  Doc was concerned - almost enough to do a Bone Marrow Biopsy.  But then I went to the hospital for meningitis and shockingly my WBC jumped up close to the good range.  Oncologist explained those "spots" must have been my Bone Marrow working Overtime to make lots of WBC.  Made sense to me and Shane (with those CPA letters behind our names - we tend to trust the MD's).  Even two weeks later, I had blood work in his office and my WBC was very good, so he suggested cancelling the March PET scan.  That sounded reasonable to us with the good WBC coming out of the mouth of the "MD".

A month later, WBC in the toilet and I'm ready to be "doctored to death"...

So after a LOT of crying (me not Shane...) we decided we'll have more blood work on Tuesday with the Rheum.  We are realistically predicting that the WBC will continue to fall.  We also predict Rheum will still have no diagnosis.  We will demand the PET scan pronto and if the spots are still in the Bone Marrow, we think it's time to bite the bullet and have the horse kick me in the hip and do the Bone Marrow Biopsy.  It's the ONLY way to take cancer out of the picture.  Then, maybe we get we start getting second opinions on the Rheumatology side.  So if you know of an excellent Rheum in the Baton Rouge Greater Area, feel free to pass the name along.

Whoa....  this was a long post, but there was quite a bit of background info that I felt was important...Tomorrow I'll post something cute and non-medical!!  

This made me laugh for at least 5 minutes...hope it had the same effect on you!!

a Padlocked Conference Room...

Oh, I'm on a roll now...

There have been a few times during my career as a CPA where I have joined with a group of my client's fellow advisers and we have come up with some solution to a problem or maybe there wasn't a problem, but we have been proactive in developing a plan for our client's benefit.  Often the group included me, an investment advisor, a tax attorney, an estate planning attorney, an insurance advisor, and a handful of others...

and at the end of the day (or months), when we had solved a problem for our client, I always felt this great sense of accomplishment, and I was proud of our work, and it made all of the boring tax returns worth it...

so here's my plan...I'm going to get one of those police vans, you know the big white ones...and I'm going to make various stops around town, picking up a few doctors I know...namely, my oncologist, my neurologist, my rheumatologist, my primary care physician, and my therapist - just because I think she will keep everyone focused...

then I'm going to padlock them into a comfortable conference room...from there they will have full access to my medical records, they can invite any doctors, they can order any tests on me, I will provide a full liquid diet as I was provided in the hospital, and they can have access to any medical research...

and there they will discuss my medical records, as a group, finding commonalities, or maybe none....but they will discuss...and work as a team for five days (the length of time I spent in the hospital for meningitis)...

And when I awake from this dream, I will be healed and frolicking in a meadow of bluebonnets...but a girl can dream...

Back to the Rheumatologist

Of course Shane and I had an appointment with a Neurologist who specializes in Cancer patients last week. I'm pretty sure they removed his sense of humor somewhere along the the way...must be part of the "specialty"...Anyway asked me to do a bunch of things like walk a straight line (drunk!)...Repeat three words (totally forgot them after he said them).  I especially liked when he continually reminded me that I had a "Brain Injury"...I REALLY wanted to ask for a Handicapped Car Tag, but I chickened out....

When I finally got to talk I told about the pain all over my body - back, legs, arms, hips - everywhere...

Wait for it.....He reminded me that I had a.........BRAIN INJURY..... and he gave me a paper on Leg and Back Stretches...Now if I knew Origami, I would have turned that paper into a sword and cut off his P#N!$, but instead, I smiled and said, "Thank You, I'm certain this will be helpful."

So the pain continues to get worse - like Shane has to help me out of bed, worse...but I go away with a few friends and my two sisters just to a house here in Baton Rouge last weekend...on Saturday I take a shower and I get the "a-ha" moment...."Erythema Nodosum" is back...I know you are thinking I make this stuff up, but I really don't...If you check the post here (believe it or not it was just in January), I was diagnosed with "EN".  Naturally the Rheumatologist said it was probably a "one time" thing and I said "she drinks the Koolaid"....who won that one???

But I guess with Viral Meningitis and a Seizure in the way, EN slipped by mind.  But my nurse friend told me to call the Rheumatologist and make sure I could take the EN drugs since I've added so many new drugs to my diet.  It happened to be my doctor on call and she seemed very concerned and wanted me to come in right away for a lab work.  Lab work?  Like, are they related?  Could the meningitis have been prevented?  I'm trying to be calm asking these questions but I'm a little hysterical and crying....I'm sure she's wishing she wasn't on call....

So the appointment was on Tuesday and we go back on the 6th for the results, but it just hit me today that I could have a new career - since clearly a BRAIN injury and tax work don't mix.  Tuesday to Thursday - that's how long it took for me to really understand what the Rheumatologist was talking about - but had she used this example in the office, I would have known right away.  So there, I could come up with easy to understand methods to explain medical topics - done!  new career.....

oh, back to the topic....at first, I just had a white cake (EN back in December).  All the blood tests in the world were only going to show it as a white cake, but then you cut it into a million thin layers and put chocolate icing in between each layer and you pour chocolate icing over the entire thing and then you have Chocolate Doberge' (aka Heather's birthday cake).




So the doctor says when we put two flairs of EN with Viral Meningitis together with a whole bunch of other things she wrote down, we could have an Auto-Immune Disease.  She didn't speculate which one.  We did this in January, but now we have a few more cards stacked against us, so we'll just wait and see...again.

After cancer I started seeing a therapist who specializes in illness.  Last week I walked in, picked up the box of Kleenex and said, "I'm Done".  I just don't know what I will wake up to tomorrow...and the best thing she could tell me, and now I probably say it 200 times a day is, "At least it's me and not my children".  It doesn't make the aches and pains go away, but somehow it puts an end to the pity party real quickly.