Extreme Pain

If you can at all avoid it try not to have a biopsy of your parotid glands with a needle of any type. This morning I awoke to a bright and early needle biopsy of what they said were "too many to count" enlarged lymph nodes and tumors from my eyes to my collar bones. This is more than double since my last MRI in August and they are growing fast. I told you a few of my options as to the problem before but I will try and clarify today...I am having a hard time chatting but typing should be easier than talking to people.

Anyway, since this is in such a sensitive place they can only numb you to a certain degree because they could harm your facial motor nerve and become paralyzed...fun for a girl my age to think about since in most cases it is not reversible. The needle was huge, about five or six inches long, not including the syringe that was attached to suck up some cells and tissue. Since the surgeon recommends I come back for another biopsy where they will cut open my neck and take actual lymph nodes for a better look and diagnosis (due to the rapid growth and wide spread pattern). Anyway, he decided to do the two hardest...one near my ear but only accessible through the bottom of my jaw and another under my tongue toward the back of my mouth. A nice cold bath of water and antiseptic were a good waker upper - not that I needed it as I was shaking with fear. I think the pituitary surgery was easier, probably because I got to sleep through that one. It was then followed by the ultrasound radiologist and the doctor squeezing my face as though it had the world's biggest zit so that they could get a good picture because of the depth of the masses. Shortly after it was followed by a stab with a numbing med, yeah right it burnt like hell! Then a larger second needle with the capability of sucking your body through it was stuck in the same place to the depth of the mass where it was stabbed repeatedly as it scrapped and sucked the mass to get a tissue and fluid sample. It was worse than any test I have ever had. Oh, I forgot, this morning i had to sit in a room full of chemo patients as I was injected with medication to help me not bleed and to observe my "operational area" more clearly. It was not a pleasant thought to think that this room may become part of my routine if any of the potential diseases are truly alive in my body.

My face is currently swelling up and my ear hurts since one of the needles went almost to the ear canal and surrounding cavity since the mass has wrapped itself around it. The other one went to the back of my mouth from the front of my jaw and I can feel swelling on the outside and inside my throat...making it hard to swallow and bite. I was not able to even try to eat a bean burrito for lunch and am hoping to have better luck with my dinner. It may end up being a protein shake, you know the kind for old people so we get our nutrients, not the kind you drink for muscles...lol.

Anyway, as a closing to my review of the biopsy, DON'T DO IT! Well, if you have to do it, try to stay as far away as possible. So in finally the surgeon said that he could not be certain whether I had the big C word - this time cancer not Cushing's - and tat I would need to have my neck cut open to get a better study done but this would help them focus that test. The news is also that I have either one of the following, lymphoma of some sort, a very serious infection that is impacting my entire body and is non-responsive to antibiotics so treatment is unknown, or finally the happy news that I have a rare genetic disorder that causes your lymph system usually used to heal and cure your body) to attack itself and to hold on to every germ I walk into. Once again no cure just ope for management. I am hoping they are wrong but I do know better and that something is wrong since my body is reacting and exhausted.

So I guess the news is no news for a couple of more days, I was put on rush due to the rapid growth and quantity. Fingers crossed and all powers that be are being called to work on this because I honestly don't know what to think when all your options are as random as a "toss of the dice" and life long. I wonder when I will ever have a normal 33 year old problem? Maybe when I turn 34? More when I know it.

My Head is Killing Me

Since last time I was kicked out of my old neurologists office for being late to an appointment that he was also late for I had to find a new one...same office but I have seen her before...besides he was only a fellow this year...to young to put my precious brain into. I see her on Wednesday to discuss the problems with my spine and brain since the old doc was kind enough to send me a letter telling me that I have severe problems on the horizon and need to see a doc ASAP. My head is killing me and people wonder why. I have one tumor in there as well as a couple of cervical spine errors meaning that there is an abnormal amount of fluid due to a blockage or nerve misfire. Which these docs can't seem to put two and two together to figure out that is why the entire body is in pain because I have abnormalities in my head straight down my spine,in my hip and god knows where else. They also mentioned my liver and lungs but that is another wait and see what to do.

So I am scared shit less for Thursday's appointment where they will cut both sides of my face an inch for a fine needle aspiration - which in a normal area of the body they would not but it is next to my facial motor nerve and could leave me paralyzed...all to see if there is cancer and what type or what horrible lymph infection/autoimmune I may have in combo with cancer or alone. So if they slip I will have a paralyzed face for the rest of my life. They will be checking the 40 plus masses in my neck and face with a neede after they shot me up with radioactive dye and use and ultrasound to see where they are going in my face. Apparently they are very deep and into the neck area where one swallows as well as thyroid and other glands in the area...no wonder I can't spit or swallow food well since they are throughout my master saliva glands too! No wonder it hurts and feels like a bowling ball and often swells to resemble one. Seriously my head and neck and face are so heavy feeling and heavy I want to just cut them off but instead I lay around in ice packs trying to keep the swelling and fluid pressures down (blood, spinal and cerebral).

I have been sick for days and can't keep food in and what I do does not stay for long. Not only am I sick physically, I am emotionally and physically drained and unable to cope with this as I have been in the past. My strength in both areas is weakening and I am getting sick more frequent than usual. What's a girl to do?

Each day I battle the headaches as this thing drags on and the stress form the docs who have not clue what they are doing and the stress of surgery where i can be paralyzed are not things that make the headaches go away. The stresses of life add to it and my head is about to explode...ad you wonder why I have headaches...except now I can not afford my special meds so they are even greater...I am not sure which is greater the fear I have about Thursday or the fear of not knowing for sure what it going on with my body or being afraid of not being able to afford and take th medications and treatments that help...and tehy say American has a good healthcare system to help people in need...my ass!

Doc's Promises Broken One More Time

And people wonder why I get tired and frustrated...they find serious things wrong and do nothing they promise; the docs that is; well maybe not just them. We are talking the highly likely-hood that I have cancer not some sore throat due to hay being cut this time of year. As my part in pushing them, I sent every single doctor a fax of my symptoms and aliments that I have had the past three months or beginning since January so they can see the progression and possibly talk to each other and get moving since they are mostly in the same practice…

The fax shows the worsening symptoms and the MRI and other tests that corroborate the illnesses that they believe I have as well as some that they have not yet discussed since it is likely I have a lymphoma disease of one type or other – there are a lot of them so the problem lies in further testing to get a the right one diagnosed and treated. Besides the document will help with disability issues and now the review of my LTD (long-term disability) status – they may have made a mistake since they never paid me and I qualified for STD (short term disability). Fingers crossed since my test and treatments will not be covered and I need this money to pay for my care.

Anyway, if I do not hear tomorrow I plan on calling and pushing some more since I was promised to hear back. It does not help I can stop by since I also have a neurologist appointment.

I know the frustration and stress are not good for me but all these tests and lack of response when a disease is actually diagnosed (in the broad sense) is hard to not get frustrated about. Today I awoke with my head in the toilet for hours because they cannot pick up the phone to get Medicare to give me my medications to keep food in my body. Or the medications to control massive headaches due to the cervical and head tumors which are rapidly spreading according to my MRIs as well as those in my face and neck area. Today I have been very sick with a fever running all day and last night as well as an upset stomach and headaches.

Not only that but they are overbilling me and Medicare so I have to work with Medicare to file a fraud report, I am trying to put it off as long as possible but the due date is coming soon or it will not fly with the government. So I have that battle as well as I am being re-reviewed for long-term disability as they laws have changed.

Why people become docs and never care for patients except for our pockets is beyond me. Right now I can’t fight both battles and have no one to help me since my family is too far away and those who could help do not even speak to me and I am not married so my man cannot help me as my next of kin. Sadly the ones who can help are too far away and too poor to do much.

Ok enough of my rant on horrible docs who find diseases and tell you that you have cancer but don’t end up doing anything about it when they say how urgent it is – come on now I have had the tumor growth go from three tumors to an uncountable amount in my head and neck. WHAT IS WRONG WITH THEM? I am so tired of this fight and just want it to be over. I want to just have a vacation from my life, no illness, no docs, no bills, and no haunting calls asking for things when they do not take the time to understand my condition but only care about their pockets. I have been sick for four years people…not like the CANCER I am likely to have according to docs is an easy one and now will be classified as head and neck since it is spreading like butter.

Can someone please explain how a doc can tell you that you have cancer and then not call as promised this past weekend so I can get the follow up tests and surgery done as well as plan radiation and chemo or whatever we decide…see, I no longer trust them and plan on having a lot of say in my treatment. I am too damn young to do this all and just wish there were more of me…energy is drained and resources are slim.

Where are the docs and all those people who promised to help me? It’s no wonder I am sick on top of the tumors and lymph infections…just tell me where are all those people?

PS – Am I angry? Yes and no, more frustrated with promises not kept and the inability to do things for myself because I am so sick.