cut the red wire NOW!!!

today is the second time doctor #6's office has called me to see if i have made a decision. (what is the fishsticksandsuch rush?)....i told them very nicely (well maybe not so nicely) not to call me...i will call them...talk about added stress and pressure....the nurse explained to me that there are many people involved with a surgery like this and it takes about 2 months to plan/schedule, they just need a heads up....(understandable)....but explain that to me first.

nip/tuck

the last of the recommended appointments....the doctors explained that basically this is a very complicated surgery....it will take half a day (that's 12+ hours possibly)....can lose a lot of blood....blah, blah, blah....the statement the plastic surgeon said that stood out the most was...."we will be throwing it away, so we might as well use it."....he was referring to my leg....the area below my knee and above my ankle...they will use the tissue, muscle, skin, veins and whatnot's to reconstruct the area after the amputation....i figured that they would be discarding of the leg somehow...but, when it's put like "throwing it away" gives a whole other perspective....i found this article about the surgery...not all will apply to me, but if you are interested in getting a better understanding take a glimpse....warning it's pretty graphic at times....

http://www.sarcoma.org/publications/mcs/ch20.pdf

the amputation clinic

my first appointment in the journey towards losing 1/4 of my body (joy!)....it was interesting to say the least...basically they told that i would be able to wear a prosthetic....2 out of 3 people choose not to wear it and usually kept it in there closets....i'm thinking i am not about to spend thousands of dollars on something and not wear it....(however, i did have a brace made a few years ago that cost about twelve-hundred dollars and it hurt like heck, so i put it in the closet...oops)...there were 4 people who were in on this consultation (plus, germ who went with me to be my note taker and provide support, props to germ.) 2 doctors and the 2 people who would actually build the prosthetic...one of the doctors was well informed and friendly, was able to answer my questions and be honest about what to expect...the other doctor...was totally clueless...he says to me...there are steps involved with this, the first step should be the pain clinic (as he uses his hands to demonstrate step 1) before making such a big decision...(um, do you think i would be here if all i had to do was go to the pain clinic?) step frickin one was done two years ago....NEXT!...then the other doctor interrupted his spiel and clued him in on what was up...(aren't they supposed to read the chart before they come to the room?)...then he went on to describe what the prosthetic would look like...(ew!)...using the prosthetic he says will take 3 times the energy it would normally take to walk....(it's already hard for me to walk as it is, can't imagine adding something else to cause more difficulties, aren't prosthetics supposed to make it easier?)...about 6-8 weeks after surgery i would come to them - pm&r (physical medicine and rehabilitation) and they would fit me and mold me for the prosthetic...until then i would be in a wheelchair...and after i was off of pain medications i could use crutches...but he felt that the wheelchair was the safest bet, because if i feel and broke something using the crutches i would be in a lot of trouble (with who?)...then there would be therapy occupational and rehabilitative....and that was it...a lot to think about.

the denial letter

This is what the letter said.

Dear Ms Reed and Ms. Fitzner,

Thank you for your interest in, and application to, our Foster Parent Program.

As a Roman Catholic organization bound by the religious tenets of the Church, we are not in a position to further process your application for a foster home license or to make a recommendation to OCAL. (Office of Children and Adult Licensing). Accordingly, we will take no further action on your application.

Please be advised that there are other Child Placement Agencies in the greater Lansing area that will process your application for foster home licensure and to provide the appropriate certification and recommendation to OCAL.

Should you have any questions about the licensing process or other available Child Placement Agencies, you may contact...

So as you can see they never came out and said "because your gay" in the letter. We sort of feel this is a further slap in the face. At least they could be up front about it in the letter. It is not like it is something that you can't speak of. But maybe that is how they handle all denials. Maybe if someone was denied because they had a criminal background, or their home was unsafe, or they had someone dangerous in their home they would get the same letter. It is nice to know we are all on the same level.

a spot of bother

the friday after finding there was no malignancy, i received a phone call from doctor #6's office to say she would like to see me wednesday....i assumed it was to go over surgical options, so melinda, my parents and i went to the appointment....to find out what the next step was....the first person that came into the room was doctor #6's physician assistant jill...jill had a look of concern on her face (that told me something wasn't right)....she asked me how i was....i told her i wasn't feeling so great, that i was in a lot of pain, losing weight, very tired and so on...i then said, so jill what's the next step...when can we take these tumors out?...she basically said, it's not that easy, but she wanted to wait for doctor #6 to explain it to me....she then leaves the room...again WTF?

doctor #6 enters the room...and she says that the tumor that was originally thought to be on, near, around the bladder is actually in the femoral nerve...(The femoral nerve is located in the leg and supplies the muscles that help straighten the leg. It supplies sensation to the front of the thigh and part of the lower leg.)...if she removed the tumor, it would cause damage to the femoral nerve and would make my leg useless...i wouldn't be able to move it...her concern...she is not able to guarantee that the tumor in the femoral nerve is not malignant...the only way to tell is to take it out and biopsy the entire tumor....so i said okay take it out and if it leaves me without use of my leg i will deal with that...her response...i would be back in 2 months begging her to take my leg, because my leg would be like an anchor....(i already feel that way and i am having trouble getting around as it is now)....so she says my option would be the hemipelvectomy....(hmm)...what's the other option? the other option would be to try to monitor the tumor, and see if it is malignant...how do we tell this? i ask...to put it bluntly...it would spread to the lungs...okay, so you are telling me that i can either have my entire leg amputated or wait for cancer to spread to my lungs?..."yes."

before i was to make this decision though she wanted me to go visit the amputation clinic and a plastic surgeon...to further understand what would be happening if i decided to have the surgery...IF I DECIDE...in the meantime she wanted to check the biopsy site to see if there was an infection...she sent me to have an ultrasound...the ultrasound people told me that there is so much damage back there that they can't even tell if there is an infection...(nice).

bound and gagged

http://www.slapupsidethehead.com

Today, Virlena and I had more upsetting news. As many of you know we are in the process of getting licsensed to do Foster Care. We can't get licsensed through the State because I work for the department and I know the liscensing workers. There are a few private agencies in the area and a few workers were recommended to me, at these agencies. I ended up calling one that has "Catholic" in the title. We were sort of leary about contacting them because we all know how the Catholics feel about the gays. After talking to them, both Virlena and I were informed that it should not be a problem that we are gay. We were told this many times, throughout the whole process. Our worker called and told Virlena that the Lansing Diocese rejected our application because we are gay. (Our application wasn't even complete so I am not sure who it even got submitted to them in the first place.) We were never told at the orientation or at any home visit that we would have to get approved through the Lansing Diocese before our application was submitted to the State for approval. We were just lucky enough to be the ones to get denied.

there's good news and there's bad news

continuing with the story...when we got home, i got out of the car and still slightly drugged walked into the house and melinda says "there's blood all over the back of your pants"...not good...so we investigate and there was a lot of blood (obviously)...we called the hospital and they told us to put pressure on the "wound" for about 20 minutes...20 minutes later we thought okay it stopped, yay...we put another band aid on it and went about our business...wrong move, bleeding continued...but it wasn't the color of blood...it looked more like the color of mississippi mud...a reddish/burgundy clay kind of a color and it had chunks of something in it...it was gross...so again i called the hospital and tell then what was happening...they tell me that they will have someone call me back...the phone rings about 20 minutes later and it's matt (yay matt), he says that it's dead tissue and other crap (i forget what word he used) and the drainage is okay, should stop in a day or two...if not then i can go to the er and get a stitch or 2...okay, thanks matt...(i am not going to go to the er for them to stitch up anything that is trying to "drain" dead tissues and other crap out of my body)...i'll just let it drain...so, i let it drain for 10 days (having to change the pad we used for soaking up the "stuff" 2-3 times a day)...10 long pain in the ass (literally) days...

in the meantime i was waiting for the biopsy results...and i called because i hadn't heard anything by the 3-5 day window and i learn that doctor #6 was on vacation and i had to wait for her return before i got any results...(WTF?!?!?!), which meant we had another 10 days to wait...after the drainage stops i start having very intense pain in my thigh...like vomit inducing pains....and i have a fever (possible infection?) call the hospital again...if fever isn't over 101.5 then it isn't an infection they say...my normal body temp is 97.9 my temp. the thermometer read 100.9 to me, that was a fever...that lasted 4-5 days...(i was a very unhappy camper during this time) eventually my temp goes back to normal, but the pain remains...(i am not one for taking pain medication, i didn't really fight taking them during this time)...monday finds its way here and i call the hospital again for the results...they have to call me back, they call back to say my case has to be discussed with the tumor board on wednesday...(ARGH!)..wednesday comes...tumor board meets after hours...(double ARGH!)...thursday they call...NO MALIGNANCY!!! we're pretty happy...(i however am still in crazy pain)...but very happy that there will be no amputation and i'll only have to have surgery...so we think.

just when i thought it was safe to go in the water

last november i started having this weird cramping feeling...i thought that maybe it was menstrual related, but it was lasting a bit too long for that...and i don't really get menstrual cramps so i started poking around the area...and i found what felt like a lump....so i made an appointment (it is now december) with my friendly neighborhood gynecologist (who i have yet to actually meet) i always see her nurse practitioner whom i previously thought was pretty cool (as cool as one can be when she is looking at your private parts)...anyway...she examines me and tells me that she doesn't think that it's anything to worry about, maybe just swollen lymph nodes...okay, silly me to think it could be anything else, given my history....so i accept that answer for about a day...then i call a primary care physician who is taking new patients, i had yet to get a primary care in the lansing area...one could see me in february...(it was the holidays so this answer was acceptable)...i go am suprised to see that she is so young, she was very personable and spent a lot of time listening to my concerns (A+ Dr. Williams) after hearing my story...doing her exam, she sends me to have an mri...not just the ordinary 45min-60min, mri but a 3 hour mri....preventative measures....okay, i can work with that....results come back....they see something on my bladder (so they think)....another test is ordered...ct scan...test comes back...not on my bladder...near it/around it....whatever it...sends me to neurologist....can't help....sends me to a neurosurgeon (he was a complete arrogant ass) can't help....he sends me back to u of m....doctor #6 wants to do 2 biopsies....(oh yeah there was also another tumor, possible recurrence from tumor in 95)...so the biopsies are done but prior to this is the information that was received.

if the tumors are benign then we will look at surgical options, the one in the front should be okay for removal, the one in the back however because there has been so much damage in that area healing would be a concern...if they are malignant then she would have to perform a hemipelevectomy....big word huh? so from wikipedia (isn't that the coolest thing?) A hemipelvectomy is a high level pelvic amputation. Along with hip-disarticulations, hemipelvectomies are the rarest of lower extremity amputations. In some cases, an internal hemipelvectomy can be performed, which is a limb-sparing procedure. A complete hemipelvectomy, however, is the amputation of half of the pelvis and the leg on that side. This type of procedure is also called transpelvic amputation. Hemipelvectomies may be required for several reasons, such as a car accident or cancer. Examples of cancers that can require hemipelvectomies are sarcomas like Ewing's Sarcoma, osteosarcoma or chondrosarcoma. People who have experienced a hemipelvectomy may or may not qualify for a prosthesis. They may use adaptive devices such as a wheelchair, underarm crutches, forearm crutches, or, in the case of internal hemipelvectomies, a cane. Physical therapy can be useful to those with hemipelvectomies to build strength and prevent problems like back pain and scoliosis. Because a hemipelvectomy is a rare type of amputation, a physical therapist trained in the special needs of a post-hemipelvectomy patient is important. that's a lot to take in right? melinda and i are looking at each other like, what the fishsticks! but we don't give into the hype....because it would've been wasted energy, until we actually knew what the results were...we maintained (or at least tried to the very best we could) in the meantime, for those of you who don't know...we are in the process of becoming foster parents...so, we have a lot on our plates (more on that later)...

back to the biopsies...i go in for the procedures the get me all hooked up to iv's and they tell me what will happen and that i will be partially sedated (a twilight) and given pain medications once i get back into the room...so they take me back to the procedure room (i am having a ct needle guided biopsy) and the doctor doing the procedure starts up...he numbs the area (starts with the tumor in the back) and i say, "um, i'm supposed to have sedation and medication for this" he says "uh, no shouldn't be too painful." so he continues and with the first poke i jerk away like "GD MF THAT F'n HURT" (i actually just said ow)...he says "did that hurt?"....okay where's the real doctor...before he can get the rest of hurt out of his mouth, i was saved by matt (i forget his title....but he was my bud)...matt comes into the room and says, "she's supposed to be medicated."...of course he listens to matt...okay, so everything is held up, because i need to be sedated and medicated before having a needle that looked to be at least 12 inches long (they say it's not the length of the needle that matters, but what they can do with it - sorry couldn't resist) go into my body, silly girl...so, i get the meds, the little oxygen nose thing (in case i "forget" to breathe they tell me)...and we are up and running.

don't remember much after that, um, the next thing i know....i am in the recovery room, eating a sandwich...then the nurse comes and says i can go home now, she calls melinda and my mom back into the room they help me get dressed and we head home...with post procedure discharge instructions...they tell me that i shouldn't expect too much bleeding (and because they just put a band-aid on the incisions i figured i would have very minimal bleeding) if only that were true...to be continued...

brachy what?

the year was 2002 and my big toe decided that it wanted to start tingling...ever so slightly at first, then full on pins and needles...by the time i get to the doctor (doctor #6) my big toe was numb and my other toes started to tingle...diagnosis...i had a new tumor...now in the sciatic nerve....so what did that mean, that the tumor was in the nerve? it meant either take the tumor out...which would leave my leg partially paralyzed or she could amputate my leg...she wanted me to think on it...in my eyes wasn't sure what it was she wanted me to think about...no leg or leg with limited movement...leg with limited movement ding! ding! ding!

so she described this paralyzation being far more complicated then it actually ended up being....after the surgery...i was in the hospital for almost 2 weeks....the first week in a regular hospital room...week 2 i was in a led room to receive my radiation treatment but not your average radiation therapy...i was to be the recipient of bracytherapy...what is brachytherapy you ask...i tried looking up an official description to find: Brachytherapy (BRAK-ee-THER-ah-pee) Internal radiation treatment achieved by implanting radioactive material directly into the tumor or very close to it. Sometimes called "internal radiation therapy". okay so for me this meant as they were removing the aforementioned tumor they inserted 10-12 (i forget the actual number) straws in my thigh....(i am sure there is a technical term for them but they looked like straws)...24 hours or so after i was delivered to the led room people in radioactive suits came in to my room (not really) but the radiation team came in and inserted said radioactive material (looked like little seeds) into the straws....and at that point i was considered highly radioactive and if i had any visitors they could only stay in my room for if i remember correctly less than an hour maybe even a 1/2 hour...this treatment lasted 36 hours...then a day or 2 after they removed the straws (the correct name just came to me cathaters) and seeds, i was free to go home after doing a little physical therapy....because my foot and ankle were paralyzed...which meant i would have to use an ankle, foot orthotic in order to walk...the joys of walking....

since this surgery i haven't been able to work, there was a lot of muscle twisting and patching and what nots going on to my thigh, (they had to basically build a new thigh because of the muscle they had taken out in 95 and more in 2002) including all the radiation and nerve damage i have intense pain...pain when sitting, standing or walking...i have worked with the pain clinic to be told i could take medicines for the rest of my life or have some nerve stimulator attached to my spine (i am sure it is a bit more techinical than that) but my answer was, um, yeah no! so some of my days are not so great and some are not too bad...just have to keep truckin.

sigh

it hasn't really been a great day for me...lots of emotions running through my head...melinda had to go to her step-mom's retirement party, so i was alone today...usually i am pretty content being alone...today however...i would've rathered been around people...but i didn't have the energy to let that be known...but upon her return home, i started to feel somewhat better...we had a moment of being in the gutter (long story) and we manged to get a good laugh out of it...just what i needed...she also made dinner...for those of you who don't know, melinda doesn't cook...but since my energy level has been pretty low...she's been in charge of making sure we are fed...today she grilled chicken and veggies, with brown rice...and it was very tasty...i haven't had much of an appetite as of late...but i managed to eat seconds...good job melindy.

the day i wore a skirt in 1995

yes, i know, the thought of your styling, not very girlie friend "v" in a skirt is humorous...but 12 years ago, i would sport one to work every once in awhile....this particular day, i was heading out the door and i glanced at the full length mirror to make sure everything was in place...i noticed that my skirt was lop-sided...so i tried to straighten it out...then i noticed this "bulge" on the left side of my body (the hip/butt area)...it looked very-very swollen, but there was no pain...after noticing this "bulge", i also noticed that i was going to be late for work, so i made do with a lopsided-skirt and continued my journey....after arriving, i called my doctor's office to see if he could get me in to see to tell me what was going on (to make a long story a little shorter i saw 5 doctors over 2 weeks before the 6th doctor could tell me what this mystery bulge was).

the 5th doctor i saw said...(in my words of course) "i don't know for a fact what is happening, i know it's not just some random swelling, but i know who can tell you what is going on, i am going to make a phone call, i'll be right back"....so minutes later he comes back into the room and says that this 6th doctor "can see you right now, she is at the university of michigan medical center"....blah, blah, blah...so my parents and i head to u/m med center to see what this woman has to say.

first of all this mass (as it is called now) is protruding out of my left hip and into the left butt cheek...as she is doing her exam...so are her 3 students...(nice, right?) i have all these strangers looking at my butt...after her exam she says...(again in my words)..."i have a good idea what this is, i will need to do a biopsy to be sure, i can do this right now, let me get the necessary tools"...leaving me with my butt in the air, she leaves the room for awhile, to return with what i called the necessary tools to do this biopsy...she explains the procedure...i am thinking that there are too many needles on the table for my comfort...but after what seemed like hours, the biopsy that actually only took a few minutes was over...waiting for the results is what took for ever....i thought i would get the results the same day...doesn't work like that...(well, maybe it does for some folks on tv, have any of you ever seen the television show house? only if those doctors were on my case...anyhow, i had to wait a couple of weeks, because this 6th doctor went on vacation and i had to wait for her to return, for the results).

again to shorten the story...the results came back positive for malignant cells, the mass was called a neurofibrosarcoma...after many mri's, x-rays, blood-test and such...i was set up to have radiation treatments to try to shrink this tumor which was continuing to grow...i had radiation everyday of the week except weekends, for awhile (don't remember how long the treatment lasted...but it was over a month), then i had a break before surgery, to have this tumor removed.

prior to the surgery the doctor told me that because the tumor was so large, she couldn't tell if it was wrapped around certain nerves in my leg (the sciatic nerve to be exact)....and the only was she could tell was when she was in there to remove the tumor...if it encompassed the nerve, she would have to take my leg...if not then there would be minimal nerve damage....so going into this procedure, i didn't know if i would wake up with my leg or not...(talk about stress prior to entering surgery)...well luckily enough, the tumor wasn't in the nerve and i woke up with my leg...i had what is considered a buttockectomy (look it up)...i also found out that the tumor was 6lbs., i was in the hospital for almost 2 weeks then i went home to recover (where i had to lie on my stomach for about a month)...(i had just graduated from college, 2 months prior to learning of the tumor...good timing eh?)...there were some rough moments during that recovery time...but i made it through with the help of my family and friends.

i have neurofibromatosis

for those of you who don't know...i have a genetic disorder called neurofibromatosis...according to the neurofibromatosis, inc....Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births)... (i was lucky to be 1 in 3,000 to 4,000 - if only i had the same luck odds in winning the lottery) ...NF has two genetically distinct forms: NF-1 and NF-2. (i have NF1) The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. (when i was a kid i had a few kids ask me if it was contagious...wanted to know "can i catch it"...no, no, you can't...i'm not throwing it to you or another question would be are those chicken pox scars) Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. (i am a mutation...ha!) If an individual does not have NF, s/he can not pass it on to his/her children. Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had neurofibromatosis. (i was told this as a kid too, that i had the elephant man's disease...you could only imagine what that could do to a little kid...then when i was 8 or 9, watching the elephant man movie freaked me out, his deformities scarred me...then i was reassured that it was a different disorder) Merrick's condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated.

NF-1 according to medlineplus...is a condition characterized by changes in skin coloring (pigmentation) and the growth of tumors along nerves in the skin, brain, and other parts of the body. The signs and symptoms of this condition vary widely among affected people.

Beginning in early childhood, almost all people with neurofibromatosis type 1 have multiple café-au-lait spots, which are flat patches on the skin that are darker than the surrounding area. These spots increase in size and number as the individual grows older. Freckles in the underarms and groin typically develop later in childhood. (after melinda read this...she made me show her my armpit)

Most adults with neurofibromatosis type 1 develop neurofibromas, which are noncancerous (benign) tumors that are usually located on or just under the skin. These tumors may also occur in nerves near the spinal cord or along nerves elsewhere in the body. Some people with neurofibromatosis type 1 develop cancerous tumors that grow along nerves. (this has occurred twice for me, to be discussed in future posts) These tumors, which usually develop in adolescence or adulthood, are called malignant peripheral nerve sheath tumors. People with neurofibromatosis type 1 also have an increased risk of developing other cancers, including brain tumors and cancer of blood-forming tissue (leukemia). (the tumors that i had were called sarcomas) Soft tissue sarcomas are malignant (cancerous) tumors that can develop from fat, muscle, nerve, fibrous tissues surrounding joints, blood vessel, or deep skin tissues. They can develop in any part of the body.

During childhood, benign growths called Lisch nodules often appear in the colored part of the eye (the iris). Lisch nodules do not interfere with vision. Some affected individuals also develop tumors that grow along the nerve leading from the eye to the brain (the optic nerve). These tumors, which are called optic gliomas, may lead to reduced vision or total vision loss. In some cases, optic gliomas have no effect on vision.

Additional signs and symptoms of neurofibromatosis type 1 include high blood pressure (hypertension), (my blood pressure is always pretty low) short stature (i am the shortest one in my family), an unusually large head (macrocephaly), (i think my head is on the smaller side of large, you too better think my head is on the smaller side of large) and skeletal abnormalities such as an abnormal curvature of the spine (scoliosis). Although most people with neurofibromatosis type 1 have normal intelligence, learning disabilities and attention deficit hyperactivity disorder (ADHD) occur frequently in affected individuals. (well as you all BETTER know...my intelligence level is way above normal, have never been diagnosed with any learning disabilities, and i am usually pretty focused).

so i know this is a lot to throw at you...but i wanted you to have a better understanding of what NF is...so as i post you know what i am talking about.