Sept 16th-22nd

Here we are the 16th time to test the ticker (heart), everything I have heard says the test is easy and fast. So worried? Nah, just a little apprehensive as before any test or procedure. All in the need for final chemo plan, ok ok ok will do. 

Test was fine all done, they did not admit me so I guess it is doing what it is supposed to do. Would they tell me if it wasn't or do I have to wait until the Dr. appt. on the 25th. Waiting wins, they tell you nothing!

Sunday the 22nd is PET scan, good lord if I have to drink that drink!!! I have the urge to puke just thinking about it. Ok I have read it is an injection used  for the contrast. That has to be better....right?

Ok more apprehension.

And so the technician explains the test, injection blah blah blah.....sit and wait blah blah blah.........lay down in the big machine blah blah blah. Nothing earth shattering, seems pretty much the same as the CT scan only no gross stuff to drink :). And of course no test day is complete without no answers. But they did not admit me so that must be a good sign.

And so another week will pass tests will be done and I will begin to ponder what chemo has in store for me. Will I lose all my hair? Will I care? Will others care? Will the bumps be unsightly? Will I care? I have a feeling they are creepy looking. Researching some of the meds the Dr mentioned as possibilities. Amazing stuff yet scary all at the same time. Writing down my questions for next visit like:where is the "fracture in my scull?" (yes I am finally going to find out, this was probably what those horrendous headaches were from way back when) "how many rounds will I have?" (although I don't think that one can be answered until we know what the medicine is for sure.

I have decided to go with Chemo will probably kick my ass, that way I am ready for it. But I really don't mind if it does not. I don't like the sounds of all that nausea. Even before all this I have never been a fan of nausea and have slept through it whenever possible even in the case of an ordinary bout of sickness. Maybe I can just do that, sleep through it, but then everyone may take that as I am depressed etc. I am not depressed I am just nauseous, let me sleep and no one gets dirty, or sick. 

Next stop 25th will Chemo be set or will the tests show something that will make it impossible? Sorry I know that is negative, but you know you would think it too if it were you. I don't have any bad vibes like before with the other stuff, just a little worried.

Perfectly normal worrying!!

~Band of Horses~

"The end is not near"

http://www.youtube.com/watch?v=yswb4kjm94g

Sept 11th

So finally time to talk chemo. Imagine my disappointment when I find out we are actually in need of more tests. WHAT?!

My bone biopsy has confirmed that there is an "excessive" amount of lymphoma in my marrow. Ed is asking what "excessive" means. Really did he just ask that? I answer for the Dr. "means a lot" 

This news confirms the cause of the hurt in my bones, Ha I knew it was not in the joints!! The fact that I broke their equipment and they could not get what they wanted, yup lymphoma got in the way. 

A couple of the meds in the chemo line up can be hard on the heart. So now they want to test the heart and make sure it works ok.

And then a PET Scan. Another lovely image maker. Pretty soon I am going to start glowing. Why a PET scan? Well seems they don't have anything else to compare the growth or shrinking of my bumps with. None of my organs have it and you can't see my marrow, so they don't really have a way to measure if the treatment will be working. Now that he put it that way I it kinda makes sense.

And so it is Heart test Monday the 16th

PET scan Sunday the 22nd

Chemo.........in limbo

Very anti climatic appointment...........more tests.

~Cold Play~
"Paradise"

http://www.youtube.com/watch?v=J6ZWlDks0nQ

Sept 1-10th

Another week of pain!!! Now that I know there is a reason OUCH!! So let the drama begin, I have spent the last two years thinking I am getting old. Granted I am, but probably not aging as fast as I thought. Thank goodness because there are still things I want to do. I want to run again, would like to do a 5k still, get back to the gym again and not worry that I am doing it wrong. Through this I have lost a lot of flexibility and it causes pain to stretch. Oh to just kneel on the floor or to crouch down and get up again without an internal ordeal or shooting knives going through me. So exciting to think that will go away!! And hugs!! Poor Hubby can't even hug me a lot of the time without me screaming out or squirming cause it hurts. Sometimes the bed hurts, sitting hurts, moving hurts, standing hurts, computer time hurts, hurts to drive (bad leg is pedal leg) hurts to cross them, hurts to uncross them. Sometimes if I sit very very still, I get a little relief, but that ache like a bad toothache never really goes away. I can only describe it as an electrical current that never stops, slight vibrating constant pain, that only subsides and then intensifies.

Lower back, upper arms both (lower right arm), legs mostly the right goes all the way down and even into the top of my foot, both hips, shoulders, neck, collar bone (and yes the left one where the seat belt goes across). And then there are the bumps all over the right side of my head (and one smack in the middle of my forehead), sometimes they are bigger and aggravated, and a laying on a pillow hurts, never mind when you accidentally hit something. No I do not intentionally hit my head against things.Sometimes they are smaller and I almost forget they are there. And the head pressure, don't get up to fast makes the volume in the room, or any noise (if any) go up and down,vision gets weird. YUP not whooshing like when you have high blood pressure or ran too fast, but actual up and down. Put your hand on the radio volume dial move it so the volume goes up and down that is what my head does. Prefer to be kind of still when that happens a couple times I have been in motion for that! Not recommended! Yes none of it sounds like lymphoma. Who knew?

And all along there was a reason, two years I will never get back. Am I bitter? Nope just have to work on making up the two years pain free!!

I have also figured out this awfulness seems to be on a cycle. Last bad episode was around the 10th of August, this round right after the bone biopsy.

Dr. is away no testing or appointments just have to make it through this week and when the 11th comes we will be deciding on Chemo.
So doing my homework, overwhelming. So many choices.....so many side effects. Which one will I be lucky enough to get?

Meanwhile all the support of friends, family. WOW!!

My Hubby !!! Most amazing man ever. Truly my opposite and yet my very needed other half!!

THANK YOU!!!♥

My parents have fed the family every evening that I have had an appointment (which if you remember the re-cap and even since then that is quite a few nights) 

THANK YOU!!!

My daughter, who has informed me that she will not donate her blood, she will not take part in any transfusions or transplant procedures (not in the cards right now anyway) she will not hold my hair because if I am puking it will make her puke and then I would have to hold her hair because hers is longer. And of course if I lose my hair, she is more than willing to shave her brothers head.

My son, who pretty much is ok with things not "being or becoming any different" then they were before we started this road.

I have had meals delivered to us for consumption and freezing. THANK YOU!!!

And so many cards and well wishes, words of encouragement, shirts, flowers, chocolates, a quilt, bracelet's (and enough to share) and socks.

THANK YOU!!!

It is amazing how some of the simplest things can do and mean soooo much. I find that my usual easy going self is a little speechless and overwhelmed and geeze did I say THANK YOU?

I knew that support friends and family was there, but still kind of awing when you actually need it and there are no questions, no pausing they are just straight up there for you. How could THANK YOU ever cut it?

~~Tracy Lawrence~~

"Find out who your friends are"

http://www.youtube.com/watch?v=_jyafQe_2Do

August 28th

Yup bone biopsy day. Nope never had one of these either. However it has been explained to me that there will be tubes, for aspiration, slides for blood smears, and containers to hold the marrow samples. Am I interested in seeing what the marrow looks like? Uhm ok.

So this "procedure" consists of them laying you on your stomach so they can get to your lower hip bone, right above your butt. So they numb the outer part and slowly work their way in numbing as they go. Not so bad. Then there is that tapping sensation on your bone, while they numb that too (although I heard later they can't numb bone, not sure if they can or not as long as it does not hurt, don't really care). 

Then the oncologist start driving the twisty thingy which is simular to an empty lead pencil casing with a cork screw handle into the bone. Twist twist...........not so bad. Ooops broke it. 

Next one, twist twist. Something pinches in my leg OUCH. He apologizes and moves the nifty tool to the side a little, continues and then oops. YES another one is broken.

Then we are on to the third one. Finally he gets the piece of marrow. Shows me and my first thought is that is not pink, it is white, shouldn't it be pink. And what about the other stuff he was suppose to get? Nope he is done, they must have a three try and you are done policy or there is a reason they did not get what they wanted. He can't be that bad at getting marrow can he?

"Your gonna be sore." HA !! Really?!

Bandage me up, sit me up and in comes Hubby :) Awe he looks worried, I am ok they did not break me! Well not yet anyway!! Let's go give them those blood samples and blow this Popsicle stand, think I am going to need some Advil soon!

Now we get a week off, no appointments until the 11th. Then we talk treatment plan?

August 30th

Letting her go today, after 8 years of a lot of love and a lot of images. 
For those of you that know me, you know this camera is my #1 (and was a gift from Ed Fisher). The one that I always carried with me. When it hit the floor I was devastated and for me (I know kind of crazy) it was a bad omen....knew it as soon as it hit the ground...found out my medical situation shortly after... I swear a part of me already knew it was not going to be great news.
I could probably pay and get her looked and they could put her back together, she has given me some award winning images and some complete big-foots images. But I think starting new kinda fits the story here. From her being held together with electrical tape, her falling off hand grip, to all her scratches and missing writing and her lens expansion whine, she will be missed.
A new camera will not change who I am or what I can do and neither will my lymphoma, things will just be a little new and different for a little while.
The new Lumix is on order and I am ready!!


~OneRepublic~ "Marchin On"

http://www.youtube.com/watch?v=UHvgAJe8bvM

Tuesday August 27^th

Today is the day! Going to find out how far in I am and how big the fight. Still not feeling very confident. Gut tells me there is more throughout my body, hoping I am wrong! Longest morning ever, already exhausted and it is only 10:03 am. First appointment is 1:20 with an Oncologist, whatever that is.

Oncologist is very nice, I like him right off the bat! He wants to hear every symptom. Lot's of nodding, not too many odd looks. But when all is said and done he is in agreement that my symptoms don't add up. He confirms the tissue taken from the surgical biopsy  shows Non Hodgkins, Follicular Lymphoma.  I have grade indolent which means slow growing (believe it or not the fast growing is better, whoda thought) Stage III but more than likely Stage IV because he is pretty sure it is in my bone marrow. My CT scan shows some thickening like what is on my skull by my spine and one lymph node may be swollen by my abdomen. But my blood counts are good and blood tests show no sign of tissue damage.. Somewhere in here I have been told again that the bumps (not sure what one) has fractured my skull. This is not the first time I have heard this and this will be at least the second time I forget to ask where the break is.

He wants to do a bone marrow biopsy next to confirm his suspicions. He is away for the next week but offers to squeeze in my biopsy the next day if I am willing to come back. The results take a week and would be ready for when he came back so we opt for the next day appointment, the sooner the better. Then we can talk about treatment, chemo? radiation? Surgery is out that he is sure about.

The appointment with the neurosurgeon is just to confirm that my surgical incision is healing well. It is!! So now that surgical removal for all the other stuff is not an option, I am all done with the neurosurgeon for now.

But yet another test, have you kept track of how many that is? Let me recap.....MRI~fine needle biopsy~surgical biopsy~ct scan~ and 3 blood work up? Not even sure about that one. It has only been 4 weeks since MRI.

Tired.

~Demon Dragons~
  "Bleeding Out"

http://www.youtube.com/watch?v=gJEoxeW7JvQ

   Thursday August 22

Finally after almost two weeks, the leg is extra tolerable. No Advil for three days!! As a matter of fact all over feeling pretty good and positive. Oh I know it is still there but this is one of the times where it is so far in the back.

I almost feel normal. Relish it, do some stuff, everyone warns don't over do it. But they don't get it....tomorrow I could be back to nothing. There is no rhyme or reason, it will just hit again, no warning, no more ignoring it, so I will go while I can thank you very much. I will clean up the house take off some layers of dirt that no one but me seems to get to! It is ok they mean well!

If I can just feel good until the weekend is over. The plan is relatives are coming in, beach on Sat. and just hanging out with them the rest of the time. It would be nice to be functional the whole time crossing fingers, still feeling positive.

I have started to do some reading and searching on-line.
Signs and symptoms of non-Hodgkin lymphoma:
Enlarged lymph nodes~NO
Swollen abdomen (belly)~NO (OR MAYBE :)
Feeling full after only a small amount of food ~NO
Chest pain or pressure~NO
Shortness of breath or cough~NO
Fever~NO
Weight loss~I WISH~NO
Night sweats~??~ NO~ EVIDENTALY YOU HAVE TO BE DRIPPING TO COUNT THIS ON
Fatigue (extreme tiredness)~OK~MAYBE JUST A TOUCH, BUT KIND OF GOING THROUGH A LOT HERE

Non-Hodgkin lymphoma can cause many different signs and symptoms, depending on where it is in the body.

Yeah I got NONE of that people my muscle and bones hurt, can't be Follicular Lymphoma. Ed says I have a virus!! Love that man!!

• Low risk: no or 1 poor prognostic factor(s)
• Intermediate risk: 2 poor prognostic factors
• High risk: 3 or more poor prognostic factors

The study used to develop the FLIPI produced the following survival rates:

Risk group	5-year survival rate		10-year survival rate
Low-risk		91%		71%
Intermediate-risk		78%		51%
High-risk		53%		36%

SON OF A CRAP!! I think I am a 2, definitely a 1. Still not sure today and it is 9-23!! So gonna have to fight it out here, blow the chart up. I think I can do that!!

The average age for people with this lymphoma is about 60. It’s rare in very young people. Most of the time, this lymphoma occurs in many lymph node sites in the body, as well as in the bone marrow.
Follicular lymphomas are often slow-growing and respond well to treatment, but they are hard to cure.
Over time, about 1 in 3 follicular lymphomas turns into a fast-growing diffuse B-cell lymphoma.

Isn't that lovely.

And then they call I now have to go in very early morning on August 26th for a full body CT scan.

WHAT!!

Ok so I know it will have to happen to finish figuring out my stage etc. and my neurosurgeon wants it before my next  and first  appointment with the Oncologist. But somehow, this tidbit is not settling with me well. Makes it all to real that the Lymphoma may be in other parts of my body, which deep down I know we need to know for treatment, but a part of me does not want to know. Which of course is pretty ridiculous.

Battling on the inside between reason and ridiculousness.

Monday August 26

Barium Sulfate Suspension......GROSS. Have to drink 2 containers for the CT scan and well I only made three quarters through the first before it finds another way out. Bathroom is my friend and nothing I can do about it!! Still have to get through the next one too!

Ok so I do, pictures are taken, back home I go to ponder and wait. Feeling unsure about what they will find and have to wait until tomorrows follow up appointments to know for sure. Oh how the imagination can run, even without shoes!

~LeAnn Rimes~ "What I Cannot Change"

http://www.youtube.com/watch?v=Gj__mu59Lbs

Thursday August 15th

And now it is Thursday, my leg problem has transferred to my knee UGH!! Won't stop.

I have never had surgery, today the plan is to go under my skull. Not sure if I like this as the first go around, but sometimes we are not given choices, and really they do this stuff all the time, just not to me.

Hubby, me and Ashley head out. Little concerned about her going. Yes she is twenty, but I have gotten no results and what if. But I don't protest too much if I was in her shoes, yes I would probably would want to go too. After a long morning we are heading out. The drive seems to get faster every time, in reality it is not, it is just becoming familiar.

We are in, got my new bracelet, answer some questions. We sit down to wait, and within 5 minutes there is the surgeon with a nurse coming to greet us. We are ready to go in, he wants to know if we got the results for the fine needle biopsy, no we say in unison. It shows Lymphoma, what we are doing to day will get us the style and grade.

What did he just say? The delivery of findings in this place sucks. That is not good, I think..........did he say Lymphoma?

He did, I know he did. And now they are taking me and Ed in and under my breath I am telling him that is not good.
They will bring Ashley once we are set up. She has her phone, shit!

She is going to look it up I know it and we are not with her DAMN IT!!!

Swallow it down. 

Shit shit shit!!

There is the hospital gown, slipper socks, hair net. Slipper socks are tan, I really was hoping for blue (I read someone else's blog they always got blue), then they would match the gown. Don't want to take my own fuzzy socks off. They are from a close friend, wearing hubby's shirt. Not going to be able to wear any of it. Have to give hubby my engagement and wedding rings to hold on to. UGH!

Last time you ate -10:00pm apple pie.

Last time you drank 11:20 am Black coffee and it sucked.

I am now gowned and ready they bring Ashley in and I know with one look, she has looked it up, but I ask her anyway. She nods, with tears.

Tell your Dad, he can't get a signal in here.

“Cancer” is all she says.

Damn that Broken Camera!!

So it is another 4 and half hours before I get in for the procedure.Now, days later I picture  the Tumor board battling out until the last moment what to do. (not sure that is what happened, but one could hope) They have decided due to the findings of the fine needle biopsies that they are not going to go under my skull chances are that is the same thing as what is on the outside. They will only be taking tissue form the surface bumps. So that is a good thing, was not to keen on making a hole, what if everything leaked out. Can't afford to lose anything in there. 

Okay that is extreme, but really kind of glad they are not going in.

I am finally out at around 8pm. Everything is done, I have the apple pie I made Ashley put in her purse before we left the house. We wait for Ed to bring the car up, I am waiting in the wheel chair, pie GONE. Ashley says the 2.5-3 inch incision wound looks like a shark bite, and has dubbed me with this new nick- name “sharkbite”. Now we are of to my parents for dinner and to update them.

This day has the longest Tuesday beat!!

I have been diagnosed with Follicular Lymphoma style, grade and treatment pending. Next appointment 12 days from surgical biopsy August 27th. Another Tuesday!

~Greg Laswell~ "Comes and Goes"

http://www.youtube.com/watch?v=b0LNhIaGAUw

Tuesday August 13th

It is Tuesday August 13 working until noon then going to the neurosurgeon for 2:30. I am better, but still feel emotionally heavy.

Wonder if that is an actual description.

Here we are, finding our way to another Dr. office, thankful Ed is with me I would probably still be looking for the place. We are a few minutes late. I am given a bracelet and we are whisked away into a room where we wait for the Dr.

Vitals taken by the nurse, Assistant comes in. Ed does not like her. Yes he gives a rating of like or don't like with everyone we come into contact with. He makes me giggle. I am still not feeling positive about this and I tell him so. He asks why? Tell him I don't know. But I do, it is the “broken camera”. 

Do I really think that? A part of me does. I just tell him, I have bad vibes and remind him of how I am usually good with that sort of thing. He is shaking his head, total denial that anything bad will come of this.

I love him, he is my rock. He will not let the bad come.

Another Dr. perplexed!! I have done it, I am a puzzle to everyone. He talks but finalizes his non-findings with I don't know. Symptoms don't match, mass is meningioma but the other stuff.........”I don't know what they are, if you are up to it I would like to do a fine needle biopsy today”

Can't say no, can I?

Ok

So in they come, after what seems like forever (they are on call to do this stuff so they just come in from wherever they are when they get the call) with tool boxes and equipment and smiles. Okay maybe they were medical trays, with medical supplies.

Ed is rocking back and forth I swear he is going to make me sea sick. Room is too small for him to pace, so instead he is rocking.

They explain what they are going to do. 

Sign consent form.

After 3 needles they have all the tissue they want. Now they want a surgical biopsy of the one under my skull. We are on our way and someone will call with the surgical biopsy time, but count on Thursday afternoon sometime. Did I mention the plan is to biopsy the meningioma that is under my skull?

It is sometime after 5:00pm where does the time go? We have just enough money between the two of us to pay for parking, we did not plan this well, but we do know where the car is this time but no stopping for fast food. Note to self, check money before leaving house for appointments.

More explaining to family, friends, work.

Wed flies by got the call Thursday August 15^th 1:30 arrival, 3:00pm surgery!

~Youngblood Hawke! "Stars"

http://www.youtube.com/watch?v=Sr5o10aMfNk

Wed, August 7- Mon. August 12

I can't change the cards I am dealt, and I promised myself that if they just found something, I would deal with it.

So I spent the rest of the week telling some friends and co-workers. I have decided to let humor lead me through making the best of the news. Using the “mass on my membrane” as a tool along with a co-worker to make sure we cover my responsibilities, because now looks like life is gonna get a little busier than expected.

Friday Aug 9th up most of the night, right leg (thigh) I have a BBQ to run, stupid leg!!! It will not be soothed or ignored total sleep 3.5 hours.

Advil is my friend again because Saturday is BBQ day!! Time to suck it up and get it done, but the leg is still not right and still extremely sore.

All goes well, some miner bumps along the way, not a great turn out, but ok. First year heading this shin dig up, have some great people that have volunteered to help out, very pleased that the jail is bringing in the dollars!! Raffle is going well. Just the field of fun is hurting.

Then it happens it is the worst thing that could have happened and no the chicken is not burnt, there was not a fire call, no one dropped the dinners and it did not rain.

Instead.

I dropped the Lumix (most favorite camera ever)!!! Hits the ground with a crash and my heart stops, it really did. A few people around say uh-oh. I brush it off and say it is fine, it has been dropped many times, the smile I am wearing FAKE. And when I turn the switch........click, click, click.

 NO NO NO this cannot happen now, not to this camera. Yes I have another, but not the Lumix!! Not now! Bad omen, still can't catch my breath.

It is broken.

Saturday night, leg still sore but arm decides to act up total sleep 4 hours UGH!!!!

Then Monday hits me like a brick, can't seem to do anything without crying. Ed is back to work after being on vacation for two weeks, first day I have been alone since we found out about the "mass on my membrane", kids are sleeping. I am trying to get ready for work, doing all the regular things I usually do. Facebook, e-mail, make a lunch. Somehow today is not normal, I am a wreck. I don't know why, nothing has changed. I know exactly what I have known since last Tuesday. 

It is that broken camera. Shaky smile, ok maybe not.

Dressed, sigh, fight back the tears. Lunch made, sigh, tear escapes. Got to get it together, the clock is ticking. OK few moments of crying and it will be done. Why the need? Don't know just do it and be done.

Make up...........stare in the mirror hhmmm not a good idea, puffy eyes, look tired must be all the full nights of sleep I have been getting. More drips.

Got to go gonna be late!!! It is check in day, have to get there early in-case of changes. Might have things to rearrange, new lunch orders to call in. Staff to reassure, that thought makes me laugh, I will be great for that today. More drips.

Start the car, there goes the mascara UGH really?!?! I am not extremely sad, but a part of me must be playing catch up. Is my subconscious finally catching up with the verbal findings?

Marking Monday August 12^th fall apart day, can't wait for it to be done. By mid-day I finally got it back together, not fully, but enough.

I have the best co-workers in the world, supportive and not judgmental. They take the reins and leave me to cope with whatever this emotional outburst may be. All I said is I don't know what is wrong with me today and they were on it, taking my papers, telling me we they will do it, it is fine. I apologize, someone I think has laughed at me. I watch from a distance, I will still have to do the intro, I can do that. I am not my bubbly self, but I do it.Think I have forgotten to tell parents what time to pick up their kids, hope they come back at the end of the day to get them!

Tomorrow is Tuesday August 13. 

Neurosurgeon appointment. Maybe it is just that. Maybe I already know it is not going to go well. Maybe I should not think that way. But the camera is broken and I can't help but think, so am I.

~Phillips Phillips~ "Tell Me Story"

copy and paste link to hear the song>

http://www.youtube.com/watch?v=9RQ3ZHA7lK0

Seems like forever ago, but that is where my journey begins. I have decided to write about it to be able to share it, so I don't have to try and remember what I have told what to. And because....and this I find this very disturbing, I may not remember it. So I am making a reminder for me. 

Please remember I am not a writer.

Tuesday Aug 6th

I am finally getting somewhere, I have met with a new Neurologist for a second time and they have promised the tired, teary eyed me that we are going to find out what is wrong.

“So why are you here, have they told you about your MRI results?” I am seeing a Rheumatologist. He is referring to the MRI or brain scan as they called it when they called to confirm. I just had this test the previous week.

“No” and I am not seeing the Neurologist until 1:30!!!

He goes on to explain that there are areas of concern, but he does not know how to read it properly. I feel bad for him he looks uncomfortable, but is smiling. Image after image he is pausing, he is not sure. I have decided that is okay. I can wait for the Neurologist, although a part of me waits for him to suddenly, miraculously be able to read it properly.

After two years of not knowing why I had extreme headaches which faded away over time and now I am left with a sore and bumpy scalp, why my shoulders end up so tight that I can't move, or why the shooting pain in my knee is so extreme it brings me to tears and has lasted for up to 12 hours, the occasional pain in my arms. Two years ago I had also decided to start exercising and developed a great liking of running for the first time in my life. The thought had occurred to me that this is what damaged me, somehow I had hurt my spine. Is this also why at the ripe old age of 43 my vision has gone to shit at a rate of what seems to be overnight? All the thoughts run through my mind like a muddled mess.

Tumor? Don’t know.

Glance at Hubby, I am tearing up because in those big blue eyes looking back at me is everything that I am feeling. Fear of the unknown. I could go on about how that one look said so much, but kinda hard to put into words, because me and him have been together soooo long, we don't need them. 

I have a BBQ to help run, a wedding to edit, a summer program to help lead. This is really bad timing.

Yes I really thought that. 

The Dr. continues the examination. “Push against my arms, lift up your legs, how old are your kids?”

Kids good grief the kids “20 and 16”

“I don’t think there is anything I can do for you, if after they are done, if you still have a problem with your knee I would be happy to see you about it”

Then that is it we are walking out of the Rheumatologist office 2 boxes of tissues and I am wearing my sunglasses indoors, still trying to comprehend what was said, what was not said. Areas of concern, well that would explain the Neurological symptoms, that is the only relieving thing about this visit. Maybe they did it, maybe they found out what is wrong, and now they just got to get it fixed.

Well now we have a 1.5 hour wait for the Neurological appointment.

The smell of coffee is reassuring, but actually having purchased it, it is gross. The strongest stuff in the world I don't like it reminds me of Starbucks (sorry Starbucks fans) it is way too strong. We don't say much, just sit in the chairs, trying not to jump to conclusions before we find out what is really going on. Maybe he did not know how to read it. But then I am reminded of the print out of the findings.......yeah something is there. No idea what to think say or do.

We check in for the neurologist appointment a half hour early, checked it and waiting. Still kind of numb, still kind of swallowing it back. Ed has finished his coffee he looks antsy. Mine is still gross, I won't be finishing it, but I will hold it and take sips hoping with each one it will start to taste better, it does not.

We are finally in at 3:00 ish, with an apology of running late. I go in tell them that yeah bumps are still there, right side still kind of hurts. Same looks, seems I am a bit of a curiosity. This is another neurologist with the one I had last time (thanking my lucky stars it was not the same one with her last time) asking the same questions, responding with “so it hurts where?” nodding, I can tell it does not make sense to them, I have been saying that for two years. One day fine the next day a mess, but really lately last six months or so not one day without something hurting, swelling. I have another bump forming in the middle of my forehead that one is only 3 weeks old and luckily it was not there when I came the first time, so the other neurologist knows, she knows it was not there.

Sigh.

But then he says something believe it or not it is the best thing I have heard in a couple of years, “you are not crazy” and the floodgates open!!! 

I am handed another box of tissues, this makes box number three. I am not leaving here with it. They are no good, they don't have lotion in them, they are very similar to sand paper.

So I am not crazy, well at least no more than my usual. But there is still the issue of the "areas of concern". He goes on to say again that the symptoms don't match, blood work shows nothing. He is going to refer me to a neurosurgeon to get a biopsy. "You will be fine, they will find out what is wrong. Do you mind if I peak, I am quite curious." Love the lady neurologist, and her accent, can't remember what country she said she was from probably doing her residency.

What will it hurt to have her look, in my book she earned the right, when she did not just shoo me away.

Finally we are on our way out, there is family to tell, I have to make arrangements at work as these appointments are being set up almost faster than I can keep track. But the only thing we learned is that there is something on the membrane of my brain, which is better than right on my brain.

Well that is what they said.

Mass on my membrane.

I think anything below your skull that should not be there, should not be there, whether or not it is touching the brain to me seems kind of trivial.

We can't find the car. Neither one of us can remember what floor we parked on.

 Really? 

Yes

It is the longest Tuesday ever.

~Ron Pope~"A Reason to Hope"

copy and paste to hear the song> http://www.youtube.com/watch?v=UBOb0e6HXbs