Two Rare Occurences...

Okay, just when we thought I couldn't get more special we find out that the tumor in my chest is a rare genetic thing that happens in like one-in-a-million people. I still have to have surgery since it is growing. Right now it doesn't appear cancerous but it could turn later and may be turning now. If it is left there it could grow into my lungs and spine and cause major problems like crushed windpipes and paralysis...so I guess it's good we found it even though it has nothing to do with Cushing's. Now I definately will have both surgeries and this confirms the one in my head is causing the Cushing's...at least we have them all identified now and just have to wait to see what happens first. The pulminologist is calling my neurosurgeon to alert him to this new info so hopefully I hear soon. My endo is also supposed to call in the next day or so to confirm my final blood work up.

My head is spinning again!

What insanity! Well I guess this is just confirmation on how special I am...who would have thought?

Ahhhhhh....

...That's exactly how I feel right now. I wish I could just scream and it would all go away. I had to go buy a fat dress today for a birthday party on Saturday. And even though I have been living in this body for a few months now I still hate it. No woman of 31 years old should have a body like this! Unless you're pregnant of course. That and my skin hurts and my hair is still falling out. But don't worry that didn't stop me from being my typical Dulcie-self and getting it cut and colored a new shade so I look human during the recovery process. I'll just stick out my hair and well pedicured feet so no one will know how ugly I am underneath. That's how I feel right now - Ugly! I wish I was my old self and some days it's hard to believe it will ever be back. I hate this one! My skin is broken out and so thin that I get abrasion marks from my clothes.

I'm going to call the endo later to see if the rest of my tests are in so we can get this thing moving. I'm hoping to have the chest/back surgery next week. I hope they don't have to do the big cut around my waist and make me look any uglier. The surgeon promised me my svelt body back by summer - he should get going! And even though I'll be recovering in a very achy body at least I'll have clothes that fit me and will probably be big since I'll shrink back to my size 6. God, I'm almost double my old size now.

UGH! Can't they please hurry! Why is it the last mile of any race always seems the longest? I certainly feel like Charlie Brown and that damn football again - what was I thinking of course they wouldn't actually hold their promise to do surgery this week.

Aghhhhhhhhhhhhh!!!!!!!!!!!

Tight Spaces

Today I get to have my MRI of the chest. It's supposed to last an hour and a half or longer. God I hate tight spaces. Plus, how's a girl supposed to hold her pee that long? I freaked out being in that tiny tube for only 20 minutes last time. Well I have nine valium left so hopefully they will get me through it. I just have to make sure that I don't ODon them and end up napping. I tihnk I have to hold my breath and stuff while I'm in that horrible machine. Not to mention I'll turn smurf blue in that cold room with no heat. Also, I am not looking forward to the injections...I hope they find a vein in my hand this time. My wrist hurt for days after that last one.

Anyway, I can't think enough to type much now since I'm scared pretty shitless...either that or I may puke on my keyboard. Perhaps I'll write once I'm all drugged! Later!

The Heat Is On...SHIT

Hi everyone,

I think I may throw up while writing this. So yesterday I went to the pulminologist and he referred me for emergency surgery since my tumor is not in a place safe enough to biopsy and surgery is our only course of action! I have my consult today with the surgeon and my MRI. It is very likely that I could have surgery in the next couple of days. My mom is on her way tomorrow morning. I am on the phone with various docs, insurance people and my whole world is spinning around me. I can't believe this is all happening. I was prepared for the orginal surgery but now to have two surgeries conducted and more tumors. I'm not sure I am prepped for all this. I feel like everything is swallowing me whole right now. But all I can do is focus on breathing and getting through this. My appointments are this afternoon so I may write again depending on my mental/emotional state.

Did I say shit yet? Wow this is happening fast.

If Things Could Get Worse...

I guess they have. I got some results today and was immediately called by my endo. I guess you could say that was a bit weird since I am always fighting for attention with these docs. She said she had some of my labs back and I said not all so she indicated it was enough to make the call and get things rolling. My urinary cortisol level was extremely high and I was so excited I spit out - Yeah, I'm finally screwed up enough for surgery. My doctor stopped me and told me not to get too excited because she has some bad news, I thought she was going to say that I wasn't sick enough for surgery yet.

But it was worse. My CAT scan was also sent back with an alert atttached to it indicating prompt attention is required! I mubbled like, what, it's fine right, thinking finally I have Cushing's and can get cured. Wrong, well not exactly. I have Cushing's but I have two tumors causing my illness and there is a very strong possiblity of cancer as well. I have a tumor larger than a golf ball behind my breast bone. Yes a tumor in my chest which is usually cancereous - about 90% of the time. So I have Cushing's and probably cancer. My endo called the pulminary specialist and told them about me and then had me call to get an appointment. The pulminologist pulled up my CAT scan and is having me come in for an emergency appointment this afternoon which will be followed by a biopsy.

I'm about scared shitless right now and can barely breath. Just when I was at a point of being able to deal with Cushing's I get thrown even more problems and opnes that are likely serious. I'll try to keep writing to keep you all abreast of the situation but I'm sure you can imagine how I feel right now and just breathing has to be a priority.

Okay, off to find something else to occupy my mind till the appointment...FUDGE!!!

True Junkie

My arms officially look like a true junkie. Not only do I have the three bruises and needle marks going up my arm but I have a black wrist on the other. During yesterday's CAT scan they couldn't find any veins to put the angiocatheter into my arm for the dye. So low and behold they had to go through the middle of my wrist which hurt like hell. A bit of fire going up through my vein and then they had to rip it out later. Last night my wrist swelled as though I had a golf ball stuck inside and it was protruding out through the "normal" unbruised side. I slept with an ice pack and this morning I have mobility back with a very interesting bruise and blood clot marks that take up about four inches on the inside of my arm. Very sexy! I was thinking of having it tattooed that way.

I saw some friends on the street during my walk last night and they all stared at my arms and hands because of all the bruising; I think they were trying to decide if it was polite to ask me if I had been raped and pillaged.

Well, I'm off to the park to get a little color and for my afternoon nap in hopes of fading my junkie arms. Can you imagine what I'll look like after surgery if they are already having major problems with my veins?

Another Day

Today's another day of testing and I have been fasting all night...I am so hungry.

Last week I went for my pre-op blood tests and hip x-rays since that's the side that often is hard to walk on. I should hear those results more quickly but I think the doctor went on vacation which is fine since these tests won't be back for two weeks. Then I'll find out if there is more waiting or if we move ahead with surgery. Last week my poor arm was stabbed to death. I had the IV of my clotting factor for my bleeding time test to make sure they can make me stop clotting for surgery. So my hand is all bruised. She had to beat the crap out of it to get a vein to get large enough to poke. I think it took 15 minutes of slapping and then she got it on the first try. I had an allergic reaction to that so they had to give me an IV of Benedryl. Then I walked across the street to the hospital and they did the bleeding test. It still took 10 minutes with the clotting factor so I feel they may need to up the factor some more. I also pointed out some blood coming out of my skin on my legs so the hematologist added another blood test. I should point out that the average human clots within four minutes. The cut they make is about half an inch wide by half an inch deep - ouch! So after I bled I still felt a bit ill and light headed so they waited a few minutes to take my blood for the regular tests. Only six vials that time. Then I hobbled downstairs to the radiology area and had the x-ray of my right hip and femur to check them out for problems.

The hospital was horrible...everyone kept giving me all this pitiful support but really I just wanted people to treat me somewhat normal and stop asking if I was scared...um, duh, of course I'm scared. They plan on cutting out the smartest gland in my body through my nose and told me they will also take another cut by my abs so they can replace the gland with fat so my brain doesn't cave in! Plus at the hematologist office during the IV I was sitting with all these cancer patients who kept looking at me sadly because I was the youngest in the room. I didn't have the energy to tell them what was wrong so I let them think cancer...I wasn't sure which was better, cancer or a thing in my head which makes my body attack itself! So I left it alone and to their imaginations.

So today I am drinking that horrible barium drink that tastes like milk of magnesia with rotted grapefruits for a chest, ab, and pelvic CAT scan. I guess they want to see what other damage has been done by this disease and if there are other tumors. Oh what fun, about an hour of beeping and clicking! But before that I have to go upstairs for another round of blood work, only eight vials today. Then I can have some juice before the hour long tube...so actually I won't eat until about 1 or 2 today. I am going to be a crabby girl.

I've gained five more pounds in the past week or so. Perhaps that means all my levels will come back abnormal so I can get surgery instead of more waiting and retesting! Who would think one would be so excited for surgery. But hey, Ican look forward to a bikini body fairly quickly all without starving myself once I'm fixed. I may also need radiation after the surgery so I think that would add to the weight loss.

So anyway, off to the tests and then the waiting for two weeks after. But I'm tough and I can make it if this is the last round...spirits are up...unless they tell me more waiting at the end of these two weeks then you may need to be put on suicide watch! I told the neurosurgeon last week that if he thought I could live my life like this he was insane and that it was no life for me...I think I scared him.

Well I'll write more frequently this week. Happy Monday!

The Votes Are In...

Well today was this big day, I met with the neurosurgeon. I'm a bit relieved and a bit frustrated but it looks like this thing may actually happen and would have happened back in November if I was taken care of properly by the endos of this world. Ineed to have my bloods and urine rerun to show the abnormality but clearly I have all the clinical signs and I really do have a tumor in my head! Whoo hooo! Who would think one would get so excited!

So now I have the tests rerun and start pre-op blood work for the surgery so I can be given the appropriate clotting factors because of my clotting disorder. Then when the tests come back abnormal we can get this thing started and I can be on the road to recovery. Speaking conservatively he stated it appears I have a ACTH-producing tumor causing Cushing's disease and he would be very surrprised if I didn't come back completely ourt of whack! Pending whacked tests I get surgery!

I know I've said it a hundred times in this blog posting alone but maybe I'm one step closer...now if only the endos can start doing their job. If I would have had a blood retest last month we'd be on our way...asses! But I've come this far so I guess another couple of weeks won't kill me.

I'm still frustrated with the endos and stuff and the fact I could have had this at Christmas but I need to focus on now! I'll deal with them later!

Let's just hope my tests do come back abnormal so there are no more questions about what to do with me.

It's Coming...

Happy hump day everyone! It's confirmed I have an appointment with the neurosurgeon on Monday! Keep your fingers crossed he agrees that I need surgery. I'm not getting my hopes up too much yet since I've had people say things before. But it looks like it's coming...I guess you ca't think I'm faking now if I'm willing to let someone crack my head open.

Keep your fingers crossed, i'm going outside to breathe so I remember what it's like when I get to start runnign and living again! Knock on wood...I'd hate to jinx me...

God Help Me...

...or someone. I gave up the search for a surgeon in NJ today. It appears no one takes insurance and no one takes Aetna because the healthcare system only pays docs $1800 per surgery, brain surgery. The closet doc is NYC but they want me to wait six months for a consult. I've been in tears all day at the thought of having to lose everything I have worked for, my job, my home, and my life. Granted it's not much here in NJ but it's something I have worked for and would hate to have to try and do over again. Anyone who grew up where I came from knows it's hard to get away the first time muchless twice. I plan on talking to the health editor at our local paper to write a piece for them. Maybe I can get paid for it!

I have been working with my mom and hope to figure things out if I can get a little more help from my friends I should be able to swing my apartment and nothing else until I can try to go back to work again. With some fancy financing and a roommate I can swing it longer but this is about survival here. Besides it would be just as expensive to move home as it would to try and stay...not to mention the cost of trying to move back here. No way anyone would give me an apartment with bad credit because of all these medical bills.

Anyway, NY State owes me money too and then eventually my Social Security would kick in...with that help I can hopefully save my life and my health...I also have to file my taxes this week and maybe I can get some from that and it sounds like my car acciedent may or may not come through soon. My docs just spoke with my lawyers this week. But we all know they will get most of it.

I'm applying for food stamps and other goverment aid today...who would have thought my life would have come to this...begging at every door step that's somewhat open and taking from the government. But I guess that's why we pay taxes.

Okay enough for one day...