When I last left you there was so much hanging in the air. I know I've been a horrible 'blogger updater gal' but I have to say, the past few months are the first months in almost two years that I feel I have actually LIVED. That my body was not just merely 'here' but productive and useful. So I've run it ragged with excitement! Last we chatted my 'dawn' had arrived and we had some answers...key word being 'some'. :)
My appointments at the Mayo for 'My answer', aka the 18+ neck/thyroid tumors...could not have gone anymore different than I imagined. I felt as though I was handing them a gift. We, my doctors at the Mayo and I, had been working on figuring this horrible neck pain out for over a year at this point. Over a year where my quality of life consisted of how little I could move so as not to disturb anything in my neck and hoping that would equal not writhing in pain. The main problem was, even with the not moving and stuff, the pain still came. Super huge bummer to say the least.
Here I had done the leg work...figured out what my gut was trying to tell me...was my own health care advocate and had found out what the problem was. Have I mentioned the 18+ tumors in my neck yet?! That was a dang good gift if you ask me. The only problem was they wanted to return the gift. They had other fish to fry. Gah, why do they always have to have my best interest in mind...sheesh ;)
I saw my thyroid specialist and he was impressed with all that I had in my neck but he seemed much more impressed with what the labs and scans said about my kidneys. By impressed I mean freaked, as in freaked out a lot, actually. I was not worried about my kidneys yet. Yes, they were in the back of my mind but seriously wait your turn already, couldn't they see I was working on my neck here?! My neck would need a biopsy (which I completely expected) to see if the tumors (18+ in case it's slipped your mind) were cancer. I haven't even broached that can of worms yet. These tumors didn't look so good. Do tumors ever? They were all solid and I guess that's a bad sign...you want non-solid or fluid filled tumors if you're going to get them evidently. So, note to self, no solid tumors! But that was my reality, the ugly solid tumors. AND...yes there is an and...he wanted to schedule me quickly with a Nephrologist. A Nephrologist huh? That one set me back a little...I wasn't expecting that yet. A Nephrologist is a kidney specialist BUT they only deal with kidney failure and kidney disease situations. That kind of put the whole 'kidney thing' in reality for me. I now need a Nephrologist??? Just slow down a cotton pickin' minute people. This could like, be bad. Why it took me till then to figure that out I have no idea but there it was plain and simple. I, Francis Brock Spann needed a Nephrologist. The biopsy, the Nephrology appointment, and a kadrillion blood tests were scheduled for the next week.
So home from Jax I went. For all of two days. Just long enough to empty the suitcase over the washer, repack it, kiss the babies...A LOT and go back for another week. This time though I went alone. One of my sisters were helping with the kids and lets face it...I know the way like the back of my hand. I didn't expect a lot from my new Nephrologist other than a "lay off sodas and drink lots of water" and I'm not in anyway scared of needles so I had the biopsy thing in the bag. Piece of cake. In my mind it just meant five more days and we can schedule my surgery that would cure my neck pain, rid me of this awfullness and give me back my life. Dude, I couldn't have been more ready or had it all more figured out.
The week was inevidably considerably one of the worst weeks of my life. Dumbest idea EVER to go by myself! Someone remind me who came up with that "I got this in the bag stuff...what the heck?!"
I'll give you the quick rundown of the schedule
Monday: Kidney scans (yes more) and Nephrology
Tuesday: Blood work and something else that I can't seem to remember????
Wednesday: Biopsy, Neuro-Opthamalogist (Brain/Eye guy)
Thursday: Endocrinologist (Thyroid dude)
Friday: Open (or so I thought)
I guess the kidneys needed to make themselves relevant because I was in for a SHOCKER at the Nephrologist. Yes, I am in fact in Chronic Kidney Failure but I am in an acceptable level (right now) of failure...if that makes any sense. Basically means I'm not ready for dialysis or transplant YET. That was the good part of the appointment I guess if there was a good point. I guess I also have a couple of different kidney diseases. Great...just great. They are severe and can cause complete loss of kidney function. I just sat there and had this thought of at what point was someone going to just out and say "just kidding"?! He went over an entire new diet that I had to follow. I'm a darn good patient. Give me the rules and I will follow them but this, this diet he put me on...WOW it is extreme. I will get into the diet on another blog because frankly it requires it's own posting but seriously...it is all kinds of CRAZINESS. In addition to the dietary requirements of my newly discovered diseases, I have to see him every 3 months for like EVER for a special kidney scan and to check in. It's a dang good thing I like the man because we'll be spending most of 2 days together every 3months.
Tuesday was the actual bright spot in the week, just blood work and some other appointment that must not have been too important because I have forgotten what it was ;) I do remember that I laid out. That was memorable. Anyone who has kids knows that you don't really get to lay out in the sun anymore. You get to sit in the sun, play in the sun, but a chance to really LAY in the sun rarely presents itself. The Mayo is (thankfully) in Jax Beach and my hotel was just around the corner from the Atlantic Ocean. I got like 3 gossip/entertainment magazines, my ipod and I laid out for hours. It was magical. So relaxing in a week filled with very yucky stuff. I could hear the waves. Feel their vibrations on the sand. Rejuvenating...that's what it was...simply rejuvenating!
Wednesday: In future reference we can call this HELL DAY! Literally. There is no other was to describe it. It was as if the devil himself welcomed me into his abode, showed me around a bit and LEFT ME THERE! Seriously people. Not to mention that I had to go to hell alone. Why did I think that was ok?? Support. Support. Support. That is my new motto. I will ask for SUPPORT! And then I will ask for more support! It was biopsy day or hell day which ever you prefer to call it...the names are definitely interchangeable!
I wasn't even nervous. Not even a little. Let's get this show on the road peoples. As I was escorted off to a surgical suite I began to think "What the what"? I signed up for a biopsy people! I laid down in my specialty surgical outfit and for a long time it was just me and this cute little ultrasound lady. She checked out all of my 'ugliness' as she called those 18 or tumors for a while until she figured out which was the best angle for the doctor. The doc comes in and starts to explain what exactly they are going to do and it was at this point that I wanted my Mommy. Or my Daddy. Or frankly anyone at all that could have loved me through this. The nitty gritty is...18+ tumors, they biopsy all of the ones above a certain size, which in my case is something like 15 tumors. Each tumor that they biopsy has to biopsied 5 times so that there is no contamination and to make sure they got a great sample from each one. Because they are solid they can't just stick the needle in and draw fluid out (like I said before...if you're going to get a tumor...for the love of God, don't get a solid one) they have to stick the needle in and continually jab the needle in and out OVER and OVER again until they have enough of a sample. So, around 15 tumors, biopsied 5 times apiece with each biopsy consisting of stabbing the needle in and out to get the sample needed (10-25 times each biopsy), all of this happening right in front of me in my neck where I could see every bit of it. IT WAS AWFUL! It lasted hours and I can't even begin to describe how bad it hurt. Soon after the biopsy started the doc figured out that the tumors were all calcified and EXTREMELY difficult to penetrate. So they basically had to stab the fire out of them to get into them to get a sample over and over again. This is the point I wanted to scream ANESTHESIA! Every single time they stabbed they pressed down on the tumors so hard (to get in) that it pressed on my esophagus so badly that it closed it each and every time. Saying it was bad is such an extreme understatement. I couldn't cry for fear I would move and we would have to begin again...and that was just not happening. After enduring this for a few hours (by far some of the worst hours of my life) they were done. They had the samples and it was over. My neck was so swollen at this point that it was literally wider than my head. I was a mess in more ways than one. I got up, got dressed and left. I made it all the way to my car and I began to sob so hard I hit the ground. I couldn't stand and I couldn't stop crying. I know you're asking yourself, "Wait, she can drive after this procedure" and the answer is "Yes" because I was STONE COLD SOBER! NO MEDS WERE GIVEN BEFORE, DURING, OR AFTER THE PROCEDURE! To cut them a little slack, they had no idea that the tumors were so badly calcified or that it would take over 3 hours...but seriously, it was the stuff of worst nightmares.
I cried that entire night and most of the next day. I went to my hotel room and sobbed and sobbed and sobbed. Oh and put ice on my ginormous neck. And sobbed some more. At one point during the evening I got a call from the doctor who left me a voicemail saying that the results were in and it was all benign. Once again, I had not been dealt the cancer card. I think that probably made me sob even worse. What a blessing. So by the end of the night I wasn't sure whether I was sobbing out of joy, out of the horrificness that had taken place that day or the extreme pain I was in from my mutilated neck...but I'm guessing it was a little of all three. I haven't cried myself to sleep since I was a little girl but I did that night.
The next day I met with the endocrinologist again and he went over the results in more detail. I just wanted to know when the heck we got these things out of my neck. That's when the other shoe dropped. He didn't want to take them out. Poor man, the tears just started flowing again. You have to remember that in my opinion these tumors were causing all the pain, it seems logical but he didn't agree. He had a bundle of other specialists he wanted me to see in regards to the pain but the tumors would stay...for now. It seems the tumors were attached to some very important things in my throat and well it was just best for them to stay if they could. I wasn't happy about this for a multitude of reasons. The idea of tumors staying in my body is insanity to me...just craziness. Plus...what about all the pain????? I couldn't live like that any longer and after the day I had had with the biopsy I was in no mood to hear all of this and he could tell. He made the appointments with the other specialists for the next day while I sat and cried and rolled my eyes (my mother would have been horrified). Off to the hotel I went feeling completely defeated.
I perked up for the appointments for the next day but was doubtful they would warrant any results. I mean come on now...I had found the solution and they just weren't listening ;). But off I went. They did some scans of my neck with some equipment I had not seen before. But I was not impressed after the last couple of days I was pretty certain that these docs didn't know what the heck they were doing. Then I got the results...an electrical problem. I was like "seriously dude doctor, what do you take me for an idiot". An electrical problem???? He just smiled at me while I pretty much dug into him about how doubtful I was that an electrical problem had anything to do with my enormous neck pain issues. Poor guy, he really got the brunt end of all that had been through that week, but I must say, he took it like a champ.
He described how when they 'scooped' (so eloquently put) the brain tumor out it caused some 'miss-firing' in my brain to put it simply and the miss-firing was sending out pain signals to my neck on accident. If any of you are sitting there with one eyebrow raised and scratching your head like what the hell...it's ok because that was me sitting across from this man. He prescribe me a pill...yes that's right a pill that was going to block all the pain receptors from reaching my brain which would in turn stop them from reaching my neck. A pill. A pill was going to solve all of this?! I had my doubts. Doesn't this man know I've tried umpteen thousand different pills, patches, therapies to make this pain stop. He just smiled and said try it for me. So I did. For him. Or for me, so I could show him he was wrong. But that's the thing...he wasn't. I took the pill and continued to take the pill and about three days in the craziest thing happened...the pain just stopped as quickly as it came. I guess that doctor did pay a little attention in medical school after-all! ;)
I'm still on that pill today and amazingly enough I've had NO MORE NECK PAIN! Which is probably why it's taken me so long to write this post...for the first time in at least a year and a half I am living life. What an exciting sentence to write. It feels so great to be finding myself in the mist of all this again. Finding a new self though because I don't think you can go through all of what I've been through and be the same person and right now...that's ok with me. I see things differently than I ever have before and that's ok with me. My neck/throat tumors (all 18 of them) and I have made a temporary truce :). They can stay...for now. I have to get re-checked regularly for growth to ultimately make the decision whether they stay or go. I guess we'll just wait and see. And I might just put some trust back into those docs who were only looking out for my best interest ;)
There are still trials...I have to manage to whole 'kidney failure/disease' thing and that's an event in and of itself but I'll be navigating it mostly pain free. So for right now, in this time, for this brain tumor chick that's the best it's going to be. ;)