Welcome to my story!
THIS BLOG WAS WRITTEN as I was going through the terrible, terrible time of getting sick and finally getting diagnosed. The doctors, the insurance companies, all of them were stellar. But it was a tough, tough road. One that I continue to battle.
So the entries here, from March 19 - August 1 2013 are all the initial fun. I hopefully will add to this soon. No promises though. There is this really good Nicholas Sparks book that I gotta finish. Yeah, I said it. Step off man. You burn through a Nickki Sparks book and don't get even kinda choked up? You're some kinda dead inside man. Seriously...all dust and cobwebs in you. That Sparks guy can play your heartstrings like a...a...well some kinda heartstring player.
There has been a ton that has gone on since....my health has stabilized...I proposed to the woman of my dreams...(she said yes!)...then actually married the woman of my dreams....and then, started down this amazing road of creating artwork!
Oh, and for the record, there is mucho more. I took to writing while I was out sick. So granted, some of the writing drifts in and out (but seriously, have you ever read a Janet Evanovich book? I mean, stellar stuff to be sure! But you can't tell me she doesn't drift off in the middle of a chapter like an episode of Murder She Wrote! I mean, we all do it! Sorry Jan...can I call you Jan? Anyway...nothing but love to you Jan baby..but it happens. Oh yeah...so my writing...yeah...so I wrote a lot more about what was going on...but currently it is sitting on the digital shelf next to about 100 pix of my labradoodle Penelope. Anyway...what I am TRYING to get at is there is more to this story...if folks wanna hear it...I am willing. Let me know.
PS. I apologize for the pic. This is literally minutes after I awoke after surgery and they told me I did not have cancer. I was elated and trying to be all cool and throw out the rock and roll hands...but in reality...i was coming off of heavy anesthesia. So sorry if I'm not so pretty. P.S. That's coffee not vodka.
Eric's Health....In a Nutshell
I am going to be posting to this blog to help keep family and friends up to date as to what the hell is going on with my disease.
It is going to be theraputic for me as well to put all of this stuff down….the whole experience. Keep in mind that this blog is going to be pretty emotional for me….so if anyone has any issues with profanity or opening up then they need to go back to their Golden Girls Marathon. This is real deal stuff and until we get it under control, it is scaring the fucking shit out of me.
So again, in a Nutshell.
As of 7th March I have been diagnosed with Neuromyelitis optica or NMO. This is also known as Devic's disease. It is a very rare auto immune type disease that primarily attacks the spinal cord, possibly causing paralysis, and the optic nerves, possibly causing blindness. While it is often compared to a type of Multiple Sclerosis, it is not and is treated quite differently. However, the best people to treat it and understand it are MS doctors….and I have some of the best.
There is no cure. There are treatments for it however, and the best you can do is hope to keep it in remission for as long as possible.
Right now I am out of work on disability as we try to work this out. Actually I have been for some time. All the doctors at the MS clinic are seriously pulling for me. Based off of my tests, they are amazed that I am doing as well as I am. According to my MRI I shouldn't even be able to stand…sooo they are pretty blown away that I am just walking in to my appointments. (Apparently they underestimate how Bad Ass I am.)
I have undergone a number of IV steroid treatments as a quick stop gap….and now we are waiting to start my IV Rituxan treatments, hopefully in the next day or two. These are heavy duty drugs usually used for lymphomas and leukemia…..soooo I got that going for me.
Right now I am exhausted. A trip to the grocery store ten mins away wipes me out for the day. Each day I am getting a bit weaker, which makes sense. I mean we need to get on the meds treatments. Hopefully when those kick in it will help. I have a friend at work who is actually on this drug for his cancer treatment right now and he says it is the bees knees, which is awesome! But again, it just scares the shit out of me when I read stuff like "side effects may include dizziness, dry mouth, and cardiac arrest." Sooooooo I guess I'll bring a Gatorade?
So thats it. I just wanted to let my friends and family know what is going on. This is some big time, life altering shit going on. But I gotta say, I would be nowhere without my girl Cindy. She is AMAZING! The support she has given me is nothing short of miraculous. Driving me to my appts (I can't really feel my legs anymore sooooo driving is probably not the best idea)…giving me the emotional support I need. AND she is just coming off of neck surgery herself! God she is anamazing woman.
And just in case....here is a wikipedia link about it.....science man.
Medical Paperwork and the Quest for Fire
March 22, 2013
Okay I just threw in that Quest for Fire part to jazz it up a little bit.
I mean seriously, I wouldn't read anything titled "Medical Paperwork." But in the interest of full disclosure here, there isn't really any "Quest for Fire" going on...it's just...I thought it would entertain the readers....sound enticing and...well...anyway let's just move on.
SO...the medication to treat this, and really the ONLY med is call Rituximab or Rituxan. This is what I found out from my doctor last Friday. I'm thinkin' "Great! Let's get a case of it if we need extra!" Well the skinny is that there are only about 4,000 cases of NMO worldwide. With such low numbers, they have not been able to conduct case studies...anywhere. All doctors around the world just compare notes on treatment....what works...what doesn't work, etc. It is quite amazing actually. Their community.
Now since there are no case studies, this drug Rituxan that seems to work is actually designed for cancer patients. So you order up a hot batch of Rituxan and it kinda goes like this:
Eric: Ummmm...hello insurance company
Insurance Company: Hey there! What can we do ya for?
E: Well, now that you're askin', I really could use some of that Rituxan. I am kinda in a bad way.
IC: Gotcha Friend! Lemme send it right over. Ooooh, quick question, what kinda cancer do you have again?
E: Heh, funny story. I don't actually have the cancer part. I have NMO, but the best medicine is actually Rituxan, a cancer medicine.
IC: I thought laughter was the best medicine! Heh. Heh. Heh. Do remember those? From like old Reader's Digests? "Laughter is the Best Medicine" and then they would have a bunch of cute little jokes.
E: Ummm, yeah I guess
IC: Those used to crack me up. Anyway, um no cancer huh?
IC: Well let's take a look
So there is the circular problem. There are not enough people with this disease to get it FDA approved for treating NMO. It IS the number one drug used to treat it, but no one can get it approved since they can't even get a case study together. So you see the conundrum. I desperately need this in my system and we toss it out there to the insurance company with fingers crossed that somewhere in their database is another case and it pops up that they have a precedent.
Friday March 15 my doctor told me I need this in my bloodstream ASAP. I appear to be functioning fine even though my spinal cord looks like a bunch of schoolyard hooligans trashed it like the El Train in Chicago.
Monday March 18...I call my Dr's office. They say the paperwork is going through and we should know hopefully by the next day.
Tuesday March 19 I am all over the Dr's office. What is going on? I need info! And a great person there pushed and pushed to get the paperwork through and would call me by end of day!
Tuesday March 19 4:PM "Mr. Hudson, I am so sorry to have to tell you that your claim has been denied." And the floor just fell out.
Seriously....I mean...there IS no plan B. I mean how to GET the Rituxan is one thing....but the plan, the ONLY plan, is to get Rituxan. Now my dear Cindy is Director of HR at my company. What this means is that she knows the ins and outs of our Blue Cross/Blue Shield set up and knows who can help any of us at my company. She has used her magic insurance navigating skills to help many a fellow employee I am sure. It is just one of the things that makes her so amazing. So Cindy started making some calls after hours to some insurance people and later that night they said they were putting together a review team to look at my case. And in the morning to call my doctor because they may have questions for her.
**Insert an incredibly greatful and amazed Eric here**
So this is not a done deal. Not by a long shot. A review team could be:
Person 1: Rituxan?
Person 2: Yep
P1: What kinda cancer?
P2: OMG thats what I asked too! Get out of my head you!
P1: Wanna get outta here? Get some chinese and maybe read a little Reader's Digest?
I've never been to these review meetings. I am just saying there are probably a number of ways they could go.
Wednesday March 20 9:AM So the next morning I called my doctor to tell her that they may be calling her and they say that may not even be necessary! (Whaaaaaaaa?) They said that as soon as my doctor heard it had been denied, she put together a team of doctors, admins and insurance people and contacted my insurance to review with them immediately.
I was getting misty.....again. Seriously folks, I have Cindy pushing for me, and not just her but my own insurance company, the good people she was talking to wanted to make sure that the right thing happened.....I had another review team at my doctors office...ALL of them pushing asking whatever type of documentation, previous patient experiences, anything that was needed to get this cleared, everyone was going to find a way. It was nothing short of fucking amazing. Again, I am getting teary just writing about it.
Wednesday March 20 2:PM I get a phone call from Sarah Lynn at my doctors office. "Eric, I am happy to tell you that you have been approved for 6 months." I cried like a fucking baby. Cindy was working from home that day and I couldn't even tell her. I just came downstairs....looked at her....gave her the thumbs up....and hugged her and cried. This is what we needed. There was no plan B. Plan B involves dumping your 401K in order to eek out a couple years on meds that cost $50,000 per year. Yeah, 50K per year they told us. And I may need these for many many years....who knows?
But Cindy and I are thankful. So, so thankful. Thankful for each other. Thankful for the Insurance Company who reviewed everything and is doing the right thing. They understood. They got it. But this is such a friggin anomaly that it takes some navigating...and by the end they came through. So after 6 months, we show them how amazing I am doing and they will be all like "This kid is amazing! We will extend this for another 6 months and check it out later!"
So people, I want to make something clear. I am NOT bashing the Insurance Company. They came through. They are rockstars. But what needs to happen is to get more data on this NMO so that we can get Rituxan FDA approved. Because currently, if an insurance company, big or small looks on the big monster chart and NMO comes up.....and you run your finger down the list of FDA approved meds....you got nothing. Literally. And if there is nothing approved for a disease, what is someone with this disease supposed to do?
Please note....I was going to be super cool and have some sort of tie in at the end for the Quest for Fire thing like a real writer would do....but then I got all serious and kinda lost it there. But just know, it would have been awesome.
So last Thursday, March 21st, I went in for my first Rituxan treatment.
Just a heads up, this is kind of a scary story. I mean, not totally scary. Sure, if you really wanted a scary story I would come up with something that probably included a Yeti. Yeti's are always scary. I mean you are having a nice little walk in the woods and BOOM! Yeti! That would scare the shit out of me! Then how about this? The Yeti looks you right in the eye.....you can practically feel his breath....and he rips off this Yeti mask and it turns out to be the Loch Ness Monster in a Yeti costume! WHAT?? Are you freakin' kidding me? That would mess me UP! I mean you wanna talk scary??? The Loch Ness Monster stalking you while dressed as a Yeti? And then, to add icing to the cake, you find out that LNM has stolen your identity and has been using your ID and credit card numbers to order tons of crap from Bed Bath and Beyond! I mean we are talking salad spinners, those little slippers you put in the microwave, and I don't want to think about the high end juicers! I mean come ON LNM! How does a person bounce back from that? I have to say, with a heavy heavy heart, I don't think you could. THAT is some scary stuff.
So this is NOT that.
But it is a bit scary in a couple different ways. Let's just run the day down. As I mentioned in the previous post, it was a huge deal to get this Rituxan. Huge. So by the time Cindy and I walked into the lab for treatment, it was almost like crossing the finish line. I was the happiest guy ever to be getting a needle jabbed into him! We walk in and we recognize the team from when I was there for steroids. "Hey Kathy! How's Cheryl doing? She workin today?" We knew it was a big scary drug, but we had worked so hard to be here, we were just elated.
So they give you a paper to sign off on (If terrible things happen, don't blame Cheryl for instance) and then they give you a bunch of Benadryl and Tylenol. Apparently to head off any allergic reactions that may happen. Then Mary Ann, my nurse, puts on this little hazmat suit (sorry, I have to do this with your medicine) and brings in this 20 gallon bucket of Rituxan. Okay, not 20 gallons but it was a hell of a lot of liquid. I am looking at that thinking how in the hell is all that going to fit in my body?
So what they do is hook you up at a drip rate of 50ccs per something or other. Then they take your temp and blood pressure every half hour to make certain you aren't reacting. If all is good, they edge it up by another 50ccs. The highest they can go is 400ccs. But it is a slow process and I was scheduled to be there from 10AM - 3PM.
50ccs: Rockin' and rollin'. All is good
150ccs about 2 hrs in....and I start to get a bit chilly.
A nurse walks by
Eric: "I'm starting to get a bit chilly!"
Nurse: "Well you have quite a bit of cool liquid going into you. It is pretty common."
Eric: "Makes sense"
Then things got weird.
"Hey Cindy, I am really getting cold."
And my teeth started chattering like crazy....my hands and feet started shaking uncontrollably....harder, and harder. The chair I was in was shaking all over the place. I couldn't talk without biting my tongue off so I just tried to keep my mouth closed. Cindy yelled for the nurses and I could barely keep in the chair I was bouncing all over the place. Poor Cindy. I am sure it looked like her man was having some sort of seizure. A team of nurses raced in! Immediately took me off the Rituxan and gave me shots of intravenous Benadryl and Demerol....(some narcotic). They were all trying to hold me down....covering me with a dozen heated blankets....and within two minutes I was back to calm. But it was some scary stuff.
Cindy and I both caught our breath afterward....me a little druggy but still....and asked when they were going to start the Rituxan back up. "Nope, we are done for the day. That was a pretty big reaction, and we rarely keep going after something like that."
"Ummmm, s'cuse me? I just got a little chilly. Hit the thermostat a degree or two and I'm good to go! Hook me up buttercup!"
But it was not going to happen, Not without a go ahead from my doctor. Now Cindy and I were beside ourselves. There was no friggin way we were leaving without that bag of drugs in my bloodstream.
We pleaded with the nurses, telling them a little of how I really needed this etc. And all they could say was "We have to wait and see what your doctor says."
And then, my doctor, the woman who can barely believe I can stand, the woman who went to the matt with the insurance companies told the nurses "Hook him back up. He really, really needs this medication today."
Cindy and I let out a huuuuuuge breath. They say that the chills and shakes are a side effect that can happen during this. And maybe they just cranked me up too fast too soon. But all I know, is that that Demerol (or whatever) drugged me up something stupid.....and I was just kinda in and out the rest of the time. They were able to get it cranked up to a normal cc drip and no more incidents of any kind. In the end, we left at 5:30. A loooong friggin day.
But I got it.
And right now, that stuff is popping little B-cells in my immune system left and right.
And I am hoping it is good, good news.
And for the record, I don't feel any different. I don't feel miraculously feeling in my legs, or anything like that. Everyone keeps asking...so how am I? It is going to be a long road. And hopefully sometime soon I'll start to feel better.
But for now, it's the same old story, but knowing that inside, some good good stuff is starting to happen. And right now, that is more than enough.
Hey there everybody.
So a lot has been going on lately. This is not going to be a goofy silly post, I just don't have it in me today. Life is just exhausting me lately. I mean don't get me wrong....I am not losing faith in the fight...it's just that it seems like they keep changing my opponent and it starts to take its toll. I mean seriously....
Battle 01: Eric vs. Shingles...oh wait, not Singles
Battle 02: Eric vs. Osteopenia and 3 collapsed vertebrae...dunno if I blogged about this one, but I DO have Osteopenia which is a bone density problem. This resulted in 3 collapsed vertebrae in my upper neck. It is painful, but then they said this is now the least of my worries.
Battle 03: Eric vs. NMO...hey Eric you have this really rare disease and now it is your new opponent to fight.
So you can see how it is taking its toll on my psyche.
So last week:
Monday: MRI for 1 hr 45 mins again. They need to measure the inflammation of my spinal cord to see if it is going down. The Rituxan and Steroids hopefully will show positive signs.
Wednesday: Meeting with my MS doctor who is basically handling my case now. Cindy went in with me and my doctor didn't look all happy happy. We are getting good at reading doctor's faces. (or maybe it isn't really that hard.) In my evaluation it appears that I am starting to get some feeling in my feet...just a tiny bit...and that while I am numb from the chest down still....it doesn't really start at the chest anymore, it is actually somewhat lower! So I am slowly gaining feeling. (good!)
Then she talked about my MRI....and she showed us how the Rituxan (and we won't call it that anymore. In reality it is Chemotherapy. But in my case it is being used on an auto immune....but my dr. keeps referring to it as chemo so I guess it is what it is.)...So the Chemo is actually helping. The swelling is definitely being affected and they can tell that the "angry cells" in the inflammation are reducing which should result shortly in the whole thing actually going down a bit.
Then my doctor says "Sooooooo that is the good news."
This implies additional news that may be less than good.
Turns out....the "less than good news" is that their stellar radiologists are not only looking at my MRI for my spine, but for everything. Which is awesome....I mean you don't want to miss the forest for the trees kind of thing even though they are looking at a specific thing.
"It appears that you have some very enlarged lymph nodes around your heart and lungs."
The way I remember the conversation was that it went like this: "So Eric it could be a lot of things....it could be lymphoma, it could be a virus, it could be lymphoma, it could be some aggravation of your auto immune, or....it may be lymphoma." I am sure it didn't go exactly that way, but she mentioned lymphoma enough times that it was hard to ignore the hints she was dropping.
Battle 04: Eric vs Lymph Node Weirdness (It could be Cooties...OR Lymphoma)
So now what? Well of course with every trip to any doctor "We are going to want to draw some blood on your way out." (of course you are) And then they set me up with more appointments for the week with the Oncologist who specializes in this stuff.
ALSO...on the good news front, my sister Ellen took time off of work, and flew out from Connecticut to visit me! She flew in Wednesday night (so she got to hear the latest "good" news" and flew back Sunday morning. As I mentioned, I am exhausted so I won't write too much about it except that she is amazing....and I was so so so happy to have her here with me. I love my sister.
Thursday: Chemo treatment. The last time, remember, I went into shiver central and they almost stopped completely? Well I was a little nervous here this time....but they gave me benedryl immediately and through my IV so it went immediately into my sleepy little body. Throughout the day they kept cranking up the Chemo and at the end, no problems....it all went well. Ellen was there all day (fun times!) and Cindy actually got to go to work. But we kept checking in with Cindy every half hour to keep her updated on her man.
Friday: 8:45 AM...CatScan (CT Scan.) This involves sitting in the waiting room for an hour drinking a tall glass of soapy tasting water. This apparently highlights your GI Tract for the scan. Then you go in and they IV you up with contrast material to highlight your vascular system for the scan. Then the scan is another MRI tube like thing but it is more of a donut....and it lasts 5 mins. So now we have scans to see what the hell my OTHER lymph nodes look like.
Friday: 2:45 PM...Meeting with the Lymph Node specialist (Oncologist.) It seemed like she said Lymphoma a lot too. But she also said...."No matter what we find....we DO have a treatment for it. Just know that you are in the right place. We WILL take care of you." That was awesome. Genuinely. We felt like we really were in the right place.
So what we found is that my body is NOT filled with bad news lymph nodes! But I do have some, around my heart and lungs (kinda need those)....Now in order to determine the problem, we need one of those bad ones, and we need the whole thing. Apparently a biopsy will show a lot, but the shape and condition of the node itself will tell her a LOT more. So I am currently in the process of scheduling surgery to have this pulled out of my chest. The sooner the better I say...lets figure this out! THEN they need to do a bone marrow biopsy and see how my white blood cells are doing in the bone marrow. Soooooo I got that going for me too. OH...and last week my nodes in my face blew up and now I have giant chipmunk cheeks. And right before Senior Pictures!
In the end, like I said, we are scheduling for surgery...and we want to get this figured out. It puts my rare disease on the back burner because now the possibility of the "Big C" kinda thing is taking top priority. (Leave it to me to have an incredibly rare life altering disease and it turns out to be 2nd priority.)
My sister Ellen flew back this morning....she has been amazing and super supportive. Cindy continues to be amazing and super supportive....and we are just trying to figure this stuff out.....and hoping we are out of opponents. This constant changing is not good. And this latest diagnosis is not fun....but we will deal with it and get through it.....It is just that the journey from now until then could be a bit more enjoyable.
Okay, so his name really isn't Danny the Knife.
His name is Dr. Daniel and he is going to be my surgeon. But Danny the Knife sounds kinda kick ass. Like Joe Pesci coming at you with a butter knife ready to "get down to business" all the while yelling something really aggressive but casual like "Where is my fucking cannoli?"
Ahem, anyway, back to Dr. Daniels. Actually let's back it up a bit. So this was Monday, April 8 and I had a "consultation" with my surgeon Dr. Daniels (aka Danny the Knife) who is going to be removing a problematic lymph node or two in order to evaluate what the Sam Hill is going on with me.
Cindy and I pull up to the hospital, this one is a new destination for us. It is a beautiful, new, shiny building. Just gorgeous. With giant letters on the outside of the building:
Providence Cancer Center
Let me tell you gentle readers, that going to a hospital over and over...getting tested...working with specialists...it is all well and good. But there is something about knowing that you, yes you, have an appointment in a building that was exclusively built for cancer patients. It really hits you. Cindy and I sat in the parking lot just for an extra few seconds, looking up at this huge building, both thinking the same thing. We don't want to belong here.
So we walk in and the place is gorgeous. Not hospital-ey or doctor's office-ey at all. We ask at the front desk where Dr. Daniel's office is and the woman generously says she will take us up. It was odd. Both Cindy and I got the vibe like everyone was trying too hard. Like they know you have cancer so they are super nice to you. "And here is the coffee shop if you want anything afterward. Oh, and here is the bookstore and library. We have a lot of reference materials in case you need anything, etc. etc." I mean, totally nice and super cool, but you know what I mean? From the beauty of the building, to the fancy coffee shop to the gift shop to the woman guiding us upstairs....it was all trying waaaay too hard to be nice because...well crap...you have cancer.
So I get up there and they give me paperwork to fill out. Now I am starting to understand this whole paperwork scheme thing they have going on. Every time I visit an office I fill out nearly the exact same forms. And there are a lot of them! Cindy and I both figure that they do NOT enter these into any sort of database. If they did, this info would already be in there and I wouldn't have to tell them the story of my appendix removal at 22 yrs of age...again! This is just busy work. This is entirely just to keep your mind off the fact that you are in a waiting room to see a doctor about terrible things that are wrong with you. Also, it kills time as they are rarely on time.
So we go in and after the expected blood pressure (good), heart rate (a little high....you think? I am in the fucking cancer center!!!)...then I meet with Dr. Daniels. And....he is stellar. Both Cindy and I really like him. He asks a lot of questions, gives me a brief once over, and then brings up my CT Scan and runs through it with me. So apparently there are really only a handful of lymph nodes that are problematic....which is cool. (Cindy and I both asked each other "Soooo why can't they just remove those and be done with it?!" Apparently something about being able to actually identify the problem and treat any others that may pop up...whatevs....)
So the plan of attack is this:
Make a small incision at the base of my throat (Right around where my "Bruno Mars 4-Eva" gold chain is) and go in a take out a whole lymph node.
THEN they take that bad boy....walk two steps and check it out right then and there....if all is good and they get what they need, they stitch me back up, give me my chain back, and I walk out of there at the end of the day.
The node they take is somewhat inconclusive and doesn't give them what they are looking for. Then, they flip me on my side, and go in under my arm. At this point there is a big ol' lymph node there...Dr. Dan says it is about 3 centimeters and they are concerned with anything over 1 centimeter. I think he really wants to go for this one anyway. The thing is, it is attached to my heart and lung...kinda between. If they go for this one, then I wake up and can expect a 1-3 day hospital stay to heal. I am kinda thinking this is going to happen. When I questioned him on how dangerous it was since it is attached to things I like, he implied that he does this all the time and that he could do it blindfolded. Needless to say I took him up on that and we have a friendly wager! We shall see who comes out with that 20 dollars! Okay, no, no. But he did say he does this all the time and it just takes more to get at but nothing really to worry about. (Oh and did I tell you that one of my many doctors prescribed anti anxiety meds for me because of all the things that are "nothing to really worry about" going on in my life right now? Yeah, I'll keep you posted when those things start fucking working...)
Sooooo thats it. OH, and I need a bone marrow sample taken. Rumor has it it hurts like a mother, so I am requesting it be done while I am out for the surgery. They are going to "try." I am hoping. So next appt is Friday where, guess what, they are going to take some blood (no way!) and do some pre-op testing....then the official surgery is Monday. Kinda nervous about going under the knife...but hey....all will be fine. (kick in soon anti-anxiety meds!)
In the meantime, I have been going into work a couple hours a day. It is really good and therapeutic for me to see people, help out and get away from these four walls. But honestly, my mind is just spinning with everything that is going on. It's kinda hard to wrap your head around all of this. But I just keep my head down and try to just go in, listen up, and go to the next appointment. Right now it's all I can do.
I never quite understood the "T-Minus" thing. Is it take off? Tortellini?
Regardless I go into surgery 6 hours from now. Just a heads up gentle reader, that this may be a couple notches down from my normal energy due to the fact that I CAN'T HAVE ANY FUCKING COFFEE THIS MORNING!! But hey, I'm cool with it. Totally.
So let's start last Friday, April 12.
Friday Cindy and I went in for our "Pre-Op Consultation." Ooookay. Not really knowing what that was but figured they would keep us posted on what surgery day would bring. And sure enough, it was. Now surgery is in my normal hospital, St. Vincents, where I have gotten all of my other testing. It isn't in the Cancer Center. And actually, since one of the lymph nodes they may go after is attached to my heart, the surgery is in the heart surgery center. (Nope, not scary at all.)
So they do a chest x-ray, and take me to "my" room. They told me this would be the room I go to today. They took a little blood (no way!) and gave me the run down. After they told us how things were going down today it started to get more and more real. As I mentioned before, if the tiny node is good, I go home this afternoon. (doubtful). If they go through the side and get the big one then I wake up in Intensive Care and spend two days there. Then they move me to the regular wing and I spend another 2-3 days there. Sooooooo I could be spending the entire week at the hospital. But I wont know until later today. Oh, and they also may do a lung biopsy. They found a little thing on my lung that they think is an old infection (bronchitis?) but they want to make certain it isnt viral and pertains to what I have going on.
In short, I am going to be a mess.
But Cindy is going to be there when I wake up. She has a friend that is sitting with her while they wait for me. Cindy is just amazing.
So I have 6 more hours until surgery. I can't eat or drink anything. I am sitting here watching Cindy guiltily drinking coffee, and I am just grumpy. But everything will be fine. I have a ton of friends and family pulling for me. And that means the world to me.
Hey, I'm back!
I was trying to come up with some sort of witty intro there but I am on day two of Oxycodone and it kind of fogs things up a bit. They say it could have a direct impact on my funny bone so expect more confusion than clever in this post.
Anyway, I am back home! Thank God! All the ramping up and prepping for the long hospital stay and getting nervous about how they were going to be doing basically surgery on my heart and BAM! None of that! They went in through my neck, got the little lymph node, got the answers they needed and were out of there! Sooooo happy! So it went a little something like this:
Cindy and I show up at noon as requested. Surgery was at 3PM, but due to scheduling and various circumstances they wanted us there early. No prob. We go to "my" room that we had assigned to us on Friday. Then they come in to shave my chest. Really? Whoo boy, hope they set aside a couple hours for that, because man, I am one scary, hairy beast. Ten seconds later they were done. Apparently it didn't take long to shave off those five hairs I have been keeping on my chest. Kinda cracked me up.
Then they have me shower with this antibacterial soap. (Never showered in a hospital before...kind of odd.) Then it's on a gurney and Cindy walks with me to the "Kisses and Hugs Corner." Awwww. As it sounds, it's where she goes to the lobby and I go to operating room. AND it isn't even 1PM! So apparently we are getting a good and early start. We say goodbye (I got a little misty after we left I must say) and they wheel me into the pre-op room.
So a few nurses were there and asked a few questions (Name, birthdate, favorite J-Lo movie, etc. The Wedding Planner! Hello?!!) And then the anesthesiologist came in. Such a nice guy.
"So Eric, I am going to be giving you a couple IVs here. These are just to relax you before we head in okay?" Sure! I mean he needs to do what he needs to do. The first thing he does is brings out a small board and tapes my arm to it. Originally I thought it was so it would be flat and exactly how he needs it to insert the IV. So he gives me the first IV in the crook of my elbow like most blood draws and IVs. It kinda went like this:
Mr. Anesthesiologist: So this first one is to relax you a bit....it's been in there a couple minutes, are you feeling a little sleepy?
Eric: Ummmm, not really. But to be honest, I have had so much anxiety in the past few months that you really have a tough hill to climb here to get me relaxed.
MA: Well you probably just don't quite realize it is hitting your system. But now we need to get the second IV in up by your wrist. You may feel a little pinch.
E: OH SWEET JESUS!!! WHAT IN THE GOOD LORDS NAME ARE YOU DOING?? THE PAIN! THE PAIN!
MA: So Eric, where do you like to go for vacation? (He says in the most calming voice he can come up with. His bedside manner trying to get me thinking of something besides the pain)
E: OH DEAR GOD THE PAIN!! I DON'T KNOW!! SOMETIMES I LIKE THE WARMER CLIMATES FOR SWIMMING AND BEACH TIME BUT OTHER TIMES I JUST LIKE TO VACATION IN A BIG CITY AND CHECK OUT THE RESTAURANTS CAUSE I CAN BE A BIT OF A FOODIE WHEN I GET THE CHANCE SWEET JESUS I HATE YOU RIGHT NOW!!!
MA: Aaaaand we're in.
So apparently, normal people get numbed up enough by the first that the second hurts a bit, but not that much. The second is put into an artery of some sort so it hurts a bit more. But for me, it hurt a HELL of a lot more. I told him that taping down my arm was the only thing preventing me from punching him in the face! I then apologized and told him I was under a bit of stress. He smiled and said that of course, I'm going into surgery, and I am entitled. But at the same time he was glad I didn't punch him in the face.
He then talked about how I have a really good team of people in there working with me today so I had nothing to worry about. I told him that's good to hear. I mean no one likes to hear "No, no, these guys are good....but if you were here yesterday? Dang! Those guys know their stuff! I mean these guys today are going to do their best but man, it's a shame you weren't here yesterday." He laughed and said "Yeah, we're the B team, but we're gonna give this a shot." So he got my twisted sense of humor. Either that or he was still nervous about the face punching threats.
Then Danny the Knife came out! "Hey Eric! How ya doing? Before the drugs kick in here do you have any questions for me? And I just asked him point blank "So we probably are going in the side and I am here for the long stay right?" And he was so cool and so nice (they all really were) and said "Eric, I am going through the front for the small one, and I have a lot of faith that we are going to get the information we need from that. So hopefully, we will end there." It was genuinely comforting. THEN he pulled out a sharpie and wrote his initials on my chest! I felt like a slutty girl at a Poison concert! It was hilarious! But I guess he wants to make certain no one else mistakenly operates on his people! (Plus it kinda looks prison tattoo-ish and tough.)
So talking to my girl Cindy about surgery previously, and she was telling me all about the IV drugs beforehand. (Not the excruciating pain mind you but apparently she didn't feel that.) She said the drugs just wiped her out and she was totally asleep before she even was moved, and thus never even saw the inside of the operating room. Awesome I say. Buuuuuuut then I realized, I was still pretty darned awake. Two IVs in. RN Chet was all like "So Eric, we are going to wheel you in now. Watch your elbows, blah blah blah." And all I am thinking is "No! I am supposed to be down for the count already! I do NOT feel comfortable with this!"
So they wheel me into the operating room, have me roll over onto the tiny tiny operating table (I suppose so they can reach all parts of your body) but your arms don't even fit on it! They made these little slings out of the sheets so my arms wouldn't dangle too far. So here I am, thinking I am supposed to be at least groggy.....I have two IVs kicking meds into my body, one directly into an artery, and I am just hanging in the operating room meeting the team:
This is Jim, he will be making sure your inflatable boots keep working (for blood clots I guess), this is Tony he does blah blah blah. I mean we all just kinda hung out. No Danny the Knife yet which was good. It meant I had time to doze. And then the anesthesiologist looked me right in the eye and just said "Eric, whatever happens here today, I want you to know that you are not leaving until we have answers for you. I know that is what you came in here for and we are going to take great care of you and give you the answers you need to get better....okay?" It was genuinely, genuinely touching....It really put my heart at ease. That was just such an amazing thing to hear and exactly what I did need to hear right at that moment. I thanked him so much.
Then he put a mask on me and told me it was just oxygen....but that the anesthesia would be coming through my IV and I might feel a little "OH SWEET JESUS WHAT IS THAT????? THAT HURTS LIKE A MOTHER!!! WHAT ARE YOU DOING TO ME????" Which through the oxygen mask probably sounded more like "MMMF....GRMPH..GRRR..MRRRRPRD" Which sounds a lot less threatening if you ask me.
But he got it and said, "Eric, Eric, the pain will go away in just a couple seconds, I promise you, I promise you." And by the time he finished that last sentence, I woke up in recovery.
Sorry it has been awhile kids.
It has been a confusing time lately. Not confusing like "Do orange pumpkin socks go in with the colors or whites load?" Let me just respond to that, as of last October, lesson learned. No, but lets go back a bit.
Eric out of surgery
Danny the Knife tells me (in my somewhat groggy state) that it is definitely not Lymphoma but more likely something called Sarcoidosis. Shakes my hand and walks off. Eric = PHEW!
Eric healing the following week
Oxycodone every 3 hours...sleep...eat...Oxy...repeat for 4 days. Some of this was genuine pain management. But it was also sleep management. I hadn't slept well for months and that does not bode well for healing, mind or body, so a self induced Oxy coma was a welcome release. We still followed the instructions...so nothing crazy...but just kept it going a day or two longer than pain prolly required. But I gotta tell you....it was some kinda sweet.
Eric the old guy with a quick note about surgery wounds
When I was a kid, (between walking uphill both ways to school) they used stitches....then they used staples....then occasionally even some weird tape. Here, they are cutting into my throat, doing what I see as somewhat major stuff, and then they just superglue the wound shut! Hand to God. Glue! What the hey? So it just heals...glue dissolves and all is done. Science man.
Cut to: 1 week later and Eric and Cindy visit Danny the Knife
So it's a week later and Cindy and I visit Danny the Knife. (FYI, a symptom of this stuff is the occasional short term memory problem...so cut me some slack.) Now we have to meet him at the "We Got Your Gorgeous Medical Building Right Here" Cancer Center (see previous gorgeous Cancer Center Post). Only this time I am feeling a little bit better. I mean, I already know we don't have lymphoma here! Cindy and I had the discussion that this meeting could go one of two ways. It could either be DTK giving me a quick once over (he is a surgeon, not a treatment doctor after all), make certain I am healing well, and tell me what I officially have and refer me to a specialist. But at least it's not fucking cancer!!
OR something else could happen. Cindy and I are a bit jaded, suspicious, etc. as it seems each time we go in for a "standard" appointment, the floor drops out. Perhaps you remember the Encyclopedia Brown "The Case Of The Guy Who Went In For A Positive Update On His NMO Spinal Inflammation Only To Find Out That He Had Enlarged Lymph Nodes Around His Heart That Could Very Possibly Be Life Threatening Cancer." (I think it is available through Scholastic Books. But don't quote me on that.)
Soooo, standard appointment can mean many things is all I'm sayin'.
So we are in the Dr. office and DTK walks in. As I have mentioned before, Cindy and I have gotten quite good at reading faces. Again, his was not happy. He checks my scar...all is good. He discusses the surgery, they took out two smaller lymph nodes and got the info they needed so no reason to do the big one. The answer was definitely not Lymphoma or Cancer of any sort. (I am all jumping for joy inside...I mean I knew he probably wouldn't flip flop on the diagnoses from surgery day...but still good to hear.
Then he says very, very solemnly "I am so so sorry to tell you that you have Sarcoidosis."
Ummmm....okay...but it isn't friggin cancer! It doesn't quite compute. It would be like a waiter telling you they are out of mac and cheese but all they can give you is lobster and ice cream. (Not together, I mean that would be gross, but you get it.) So it was very, very confusing.
Since we heard it may be Sarcoidosis right after surgery, (and apparently when he told Cindy in the waiting room he had the same sad face) we did some research online and it was uber confusing. It really didn't seem that bad!
Danny the Knife talked a bit more, and told us we had an appt with a Pulmonologist (a heart, lung and chest expert) who deals with Sarcoidosis. Danny had also contacted a Sarcoidosis therapist and told her about my case and was arranging a one on one so I can get some additional help. He then asked if I had any questions, shook my hand and that was that.
Cindy and I back in the car. I don't know how to exactly explain the "What The Fucking Hell Just Happened Here?" cloud that hung between us as we sat in the parking lot. We were just told by a surgeon who deals with cancer, and knows how bad cancer can be, (not always, but still...) that he was very sorry that what I was diagnosed with wasn't cancer. Again...WTF? It was a quiet drive home and a bad, confusing, and emotional day for both of us.
So in the time between surgery and our follow up appointment with Dr. Daniel, Cindy and I did some research on Sarcoidosis. Since he told us that was the initial diagnosis, we wanted to get some info. Now this is confusing as hell. But here is one write up:
"Sarcoidosis is a disease that can affect any organ of the body. Very small clusters of inflammation or white cells, called granulomas, are seen in the organs affected with sarcoidosis. The lungs are the most common organs involved. These granulomas may clear up on their own, or cause permanent scarring."
Okay, okay so not so good, but not so awful either. You look it up and people have it just simply clear up on its own! I mean permanent lung scarring ain't good, but nowhere did it say it shuts em down or nothin. Okay. Then I read on and it says it can affect Lymph nodes..check....eyes...getting a bit blurry here and there so check...salivary glands...check...neurological effects such as numbness, etc....check. Okay, okay. So I have a few of these things. But it is really hard to determine from my friend the internet how big and scary this is. Some people don't even notice the symptoms and it clears up...others die from this stuff....So what the hell?
Meeting with Pulmonologist Dr. Schaumberg
So I gotta say. These doctors are great. All of em almost thus far. I mean Dr. S spent over an hour trying to get my story and to explain everything to me, etc. He was good. (Side note, as soon as he walked in the door, both Cindy and I noticed immediately that he had perfect hair. Not a single one out of place. It was haunting, yet commendable.)
So he asked me my story, from the very beginning. He said that it appeared, according to my chart, that I have had almost every test under the sun. (Ever been tested for TB? Yep! Two weeks ago!) Then he started getting into my situation. He asked about symptoms. Now like I said, the internet gave a lot of conflicting information...so I found a forum for people with Sarcoidosis, figuring, even if not scientifically accurate, it is an accurate account of people suffering with this. And one woman was compiling symptoms. She had a list of about 75 symptoms people had submitted. So I printed that out and highlighted the symptoms I had. I told the doctor I don't know how accurate this is, but here you go. He was very appreciative and it really started the symptoms dialogue.
Dry mouth? Check. My salivary glands have swelled up like chipmunk cheeks and consequently I do not generate a hell of a lot of spit these days. Gross but true. So I suck on these lemon drops constantly to help.
Trouble walking? Check. Legs have gotten worse actually and I told him they were more for decoration these days than actually functional. Also it helps me remember where to put on my shoes.
Fatigue....Night sweats...twitchiness in hands and feet...stumbling over words...memory issues...blah blah blah...Gentle reader the list goes on and on...
In the end I had approx 25 of these 75 symptoms. Apparently most folks have "a few."(Didn't sound encouraging.) He gave me a quick once over, checking lymph nodes...glands, etc. And then gave us the low down.
This is a disease that tends to affect one part of the body. If someone is affected in the eyes...if it goes into remission it comes back to the eyes. It doesn't attack the legs. If initially it's the legs, it goes back there too, etc. With me, I tend to have it all over. This makes things a bit harder. AND the fact that my spinal cord is very inflamed, makes it difficult too. He believes that all of my symptoms fall under Sarcoidosis and that I do NOT in fact have NMO. However,NeuroSarcoidosis is a toughie when it affects the nervous system.
He broke it down this way:
- Eric, we have people on one end of the spectrum who have very few if any symptoms and it goes away on it's own. This is easy.
- We have people who have flare ups and they get meds every flare up time and it goes away. This is somewhat more concerning.
- We have people who need meds every quarter on a regular basis to keep in it check. This gets serious but controllable.
- Then at the other end of the spectrum, Eric, well, we have you.
Since I tend to have it all over and or neurological sarcoidosis it takes it to the next level. I will not get meds for flare ups or each quarter. I will get meds always, on a regular basis, for life. Cindy, who knows me better than I know myself sometimes, knows that I can't interpret doctors. I need black and white. So she asked just how serious this was. And point blank he told me I was critical. This is as bad as Sarcoidosis gets and it is life threatening. I didn't want to hear that. But I needed the cards on the table. That being said, he said it IS treatable. We just need to get on treatment to see how my body responds to said treatment. Who knows? It could turn right around. But in the meantime I am still going to see my MS doctor to monitor things as well just in case I have both NMO and Sarcoidosis...which is possible.
He put me on meds that afternoon. Currently the main med is steroids. So I am on 60 milligrams a day (which is a lot!)...Plus a med to suppress my immune system....Plus a med to prevent infection due to the fact that my immune system is suppressed...Plus a Snozzberry. (okay I just threw that one in there because it didn't seem like I had enough fucking meds going in my body each day...I mean really?)
So in the end, I asked him about my surgeon. I told him how sad he was to tell us it was Sarcoidosis and not Lymphoma...and what the hell? Dr. S seemed to think the opposite. I think maybe it is because of each doctors area of expertise. Dr. S. said even though it is critical, we have it diagnosed....we have a known treatment for it...and we are jumping on it immediately. With cancer, Dr. The Knife probably knows his field expertly. If it is cancer A...you use treatment A....cancer B..etc. But he doesn't fully understand what Dr. S's field is all about. So that was somewhat comforting.
Then I asked him if I could go to work part time if my body is up to it. His response? "Oh heck yes! You should do anything you can to take your mind off the fact that you have Neurosarcoidosis!!" Too funny!
But I get it...a positive attitude helps plenty...and staring at four walls feeling sorry for yourself ain't doing anyone any good. So I am hoping to get a note from my MS doctor to let me back to work part time next week. And I will listen to my body. If it gets tired, I'll give it a break. I have learned to listen to what it needs. It knows best. And if I follow it's cues, treat it right, feed it well, and give it the medicine it needs, it'll pay me back.
I've been kind of thinking of it this way...I am an average guy....I haven't treated my body the greatest: some drinking, some smoking, too much coffee, some poor diet plans along the way, but I haven't gone out of my way to be incredibly nice to it either. Low on the exercise, eating out a lot, drinking more than I should here and there. So now my body is asking for some help. It has given me 46 years with little to no complaints. And now it needs some serious help and it is asking for it. So I am going to do every little thing I can to help this guy out who has given me a 46 year free ride to help him get back on his feet (so to speak.) And together we'll find a place where we both can be happy and healthy and treat each other right and move on.
When we last left our debilitated hero he was not doing so well.
A meeting with a stellar (and well-coiffed) pulmonologist finally diagnosed our hero with Neurosarcoidosis. (Or just Sarcoid is okay too, for those of you stumbling over this 10 point, triple score word.) While the diagnosis was a final relief in the sense that there actually WAS a diagnosis, there was still a matter of the symptoms that went with it. I mean, it is freakin' amazing that every single one of my symptoms fell under Sarcoid. And now we had a treatment plan for it. Which again, is freakin' amazing.
Now I don't like to think of myself as a whiner. (Except when I realize that I am completely out of Ben and Jerry's Phish Food Ice Cream)...But gentle reader, lets take a look at a short list of these crazy symptoms that I have been dealing with for the past 2 plus months. These would cause anyone to just go off the deep end dealing with them every friggin' day.
Eric's Laundry List of Symptoms (short version)
--Rolling fevers going up to 102 every 3 hrs 24 hrs a day. Nice right?
--Night sweats that cause you to wake up 12 times a night
--The whole numbness from the waist down thing
--Stumbling, tripping over my own toes
--Legs getting bad enough that I needed a cane in order to keep from falling. (FYI...not a good look for a 46 year old unless you are like a stuntman who has like these cool scars and stuff)
--Shaky hands that cause me to spill even a cup of coffee
--Uncontrollable leg and hand twitches just out of the blue
--Huge swelling of my face (My face for crying out loud! That's my bread and butter!)
--Black tongue (gross)
--Dizziness (i.e. don't close your eyes in the shower or you are going down in a blaze of conditioner!)
--Things tasted really, really salty. (Not debilitating but weird)
--Extremely limited JetSki abilities
Okay I added that last one just to see if you were still paying attention. There was a lot more going on that I won't get into. I asked my doctor about the times I would wake up in the middle of the night standing in the living room in that Wallaby costume. Unfortunately he said that had nothing to do with my illness....so apparently I have some therapy coming up ahead of me too. But moving on....
So I was diagnosed Wednesday, April 24. That night I was put on three meds as I had mentioned previously: Steroids, an immunity suppressor, and one to cover infection.
So what happened?
Within 24 hours my legs felt "slightly" stronger. What the hell?
Within 48 hours I was able to walk up the stairs normally...not baby steps with two feet on each step.
Within 3 days my swelling in my face was considerably less. ("Baby! I can see your ears again!" --C. Marple)
Within one week my legs were feeling strong and no cane needed.
Actually within one week nearly all of my symptoms were reduced! It was crazy! Shaky hands....nearly gone...Leg twitches..gone...fevers..gone...night sweats..minimized. I mean I would get up 12 times a night....we are down to 3 or less now. It is amazing. The proper diagnosis with the proper medication does wonders! I had no idea how quickly this stuff was going to work but holy cow....it is amazing.
So, next appointment was with Dr. K, my MS doctor/neurologist. This was the first time we had met since my surgery and since I was officially diagnosed with Sarcoidosis. She was the one treating me for that rare NMO remember? Well, we talked about it, and the bottom line is that 95% of my symptoms screamed NMO and you have to treat this as quickly as possible in order to prevent any further damage to your body. So it was the right thing to do. Now it appears that the NMO symptoms are just that, symptoms of my Sarcoidosis. So while this stuff is still attacking my spine and possibly optic nerves, the proper treatment is for Sarcoid and the NMO will fade (hopefully)! She was very, very happy with my progress. And while the 95% of the symptoms screamed NMO...100% scream Sarcoid.
All about the Ologists
So what is going to happen is she is going to continue to be my neurologist...I will still see my pulmonologist on a regular basis to monitor my levels....and I will see a opthomologist to make certain my eyesight is not getting impaired....and I will see an endocronologist about this osteoporosis I seemed to have gotten due to low vitamin D which is a symptom of Sarcoidosis.
Sooo...in the end....
The steroids will reduce inflammation...but my autoimmune is still kicking my bodies butt by attacking it when it shouldn't. So since my immune system won't play nice, we have to take it down. Hard. Which is what my other meds do. My neurologist kept mentioning how we are taking it down almost to HIV levels since it is attacking me so much. However due to new technologies and meds, etc. we can prevent me from getting (too?) sick. This will be ongoing...but I fear my days of Cruise Ships and other giant bio-sociological experiments are a thing of the past. Simple biological things that other folks can cope with are no longer going to be within my control. Sushi, for example, which I love, is now out...most likely for good. Simply because there may kinda sorta be a tiny bacteria in .000001 percent of that raw fish that everyone but me can handle. Soooooo that kinda makes me sad. However, given the choice of eating raw fish and walking? I'm good with a diet change.
So....gentle reader.....doing good....doing fucking great actually thank you very much...compared to a couple weeks ago! I am going into work for the mornings....then home to rest. Cindy has taught me very well to listen to my body. As it gets stronger, do more...but listen to what it needs. Work is extremely therapeutic and the support I am getting there is nothing short of amazing. Cindy and I have changed our diet to a Paleo diet as well which helps with auto immune and inflammation. I will write about that later too...but it is a big change but good good news. All things are looking better. My neurologist left me with this: "Eric, when we see someone react this well to the medication at the beginning, it will usually continue to trend that way. So I think you are on a great path."
And that, my friends, makes me happy.
Hey there Gentle Readers!
This is just a quick hello to give a brief update on how things are going. (Spoiler! Pretty Fucking Well!) I realize that there is a lot to this saga that I never got down in writing. There was a long friggin journey to get where I even started writing. So I am going to do a little writing later about how this all started.
But before I do, I wanted to give an update here. Things are going well. I continue to go into work 4 hrs a day....I still take the elevator to the second floor. As I am the guy who comes up with a metaphor for everything, I figure I have only so much gas in the tank at the beginning of a work day. If I have to miss a marketing meeting because I blew all my energy going up and down stairs, well, that is just not a good use of the fuel I got.
So I take it easy at work, but I get stuff done in the time I am there. I carry Purell hand sanitizer everywhere I go as my immune system drops. ("Eric, the flu could kill you, you realize." Yeah, thanks for that Doc.) But as I have gotten better and better at listening to my body, I am making sure I get home by lunch. I have tried to push it a time or two thinking "Oh, it is just an hour or so extra and it would be good for me to go to that 1PM meeting." Yeah, my body starts to get this "Oh yeah?! You think you're the boss of me?!" attitude. And by the time I get home at 2:30 my hands are shaking like a leaf (okay two leaves.....okay, two leave with fingers that I usually type with..but anyway you get the picture). SO in short.....and this applies to healthy people as well....we are NOT the boss of our bodies! They like stuff, we should listen. They don't like stuff and show us by lashing out, we should listen to that too. (Forcing my body to "enjoy" five boxes of McDonald's Fishy McBites really didn't bode well before I started listening. Just saying....Fishy McBites Lesson Learned.)
I took a day off of work this week just because I was pushing too hard. It doesn't seem like it....but how easy it is to fall into habits. One coffee too many...then you crash. Taking the stairs once or twice because you feel you need to push forward a bit...but then you crash...And it isn't just fatigue, my body gets shaky when it is tired. Which, I suppose is something I can't avoid like fatigue. It is like having too much coffee shaky. Sometimes more than that. But still, you can't really push it if your body starts doing stuff like that. So I come home, have some lunch, and take a nap. Usually no nap alarm. I nap until my body tells me to get the hell up. Sometimes it is 45 mins....sometimes it is 3 hrs....Either way I have no problem going to bed at 9:30 and sleeping until morning.
My laundry list of symptoms have faded. I am going to set up my bike in the garage on a stand so I can ride a bit in place. Hoping that exercise, even if limited, may help my circulation and feeling back in my legs. (Which are still numb-ish.)
Silly Yoga Story
Okay, so this post really is just going on and on isn't it? I am pretty surprised you are still with me at this point. For those readers still here...rock on. You get a silly yoga story.
Okay so it isn't really yoga per se. My girl Cindy had some pretty major lower back surgery in January. Ever since she has had to do physical therapy, both with a trainer and exercises here at home. She will never be back to 100%, but by the end of a full year, she should be at her new full stretchable, reachable capacity. She is a trooper.
So anyway....we decided that one night I would join her in her PT (Physical Therapy) stretches here at home. Not a bad idea. Normally I sit and eat banana chips watching Bob's Burgers while she twists and turns out of the corner of my eye....Eric shouting words of encouragement like "Feel that burn baby!" during the commercial breaks.
But this time we did some together! To mixed results. They are mainly stretches...kinda bizarre stretches but structured to help back, upper and lower as well as legs. So we had one where we were on our backs arms stretched one way....knees up and stretching the other way....and Cindy is all like "So that should really be pulling on your torso a bit so you can stretch....don't overdo it if it is too much!" And I just busted out laughing...."What do you mean? I can't feel my frigging stomach or waist! I got nothin' here! Define 'overdo it!'" To which we decided there may be some drawbacks here.
We did a few more that really worked. It really is hit or miss. Think of your whole spinal cord as something with your personal electrical system going through it. When some of those wires get crimped, different parts of your body short out. No rhyme or reason, and they may come uncrimped tomorrow and all is good. That is what we are working on. So somethings are online, some are not as far as legs and such. So some exercises worked well, others, ummmm...not so much.
Cindy: Okay Eric, now get on one knee...
C: And reach back to etc. and hold it.
E: Check. Wow....great stretch....this is good news! Okay I like this one!
C: Okay, now lets do the other.....get on your other knee
BAM!Eric goes crashing to the floor laughing.
E: Okay Baby, I think I only have one knee online so far! Gonna need to work on that!
Cindy of course, looks seriously concerned. And she should be....this is some scary stuff....but we gotta keep positive. I mean if you can't laugh what are you going to do?.....well I don't know....knit? Something else anyway....and I'll stick with the positive laughing thing.
So moving forward. My doc said my breathing test was stellar! He is already adjusting my steroids down since I am doing so well on them....and now I just need to stay the course and listen to my body. It hasn't asked for more Fishy McBites yet...but a boy can hope.
Okay no military references....it was just a cool title for the page don't you think?
I mean like on a one to ten...at least a seven right? Okay...back to the drawing board. But seriously...
So I am still sick.
Just a quick FYI.
It ain't goin' away.
And that is kinda my deal to work with. And it sucks.
I am still working half days. I am writing this as I get home. And really I should be sleeping. The keyboard is not my friend right now as I try to throw my fingers on the right keys...kinda like a twisted game of keyboard Wackamole. It doesn't always work.
First thing in the morning I am pretty shaky. But eventually it evens out. My good friend Don has been checking in on the hands in the mornings at work...kind of evaluating how I am doing. I think I am hiding it well...but apparently I suck at hiding things as Don calls me out every friggin time I try to hide it! (Unless they are car keys, I am excellent at hiding car keys from myself.)
Then I have a few work hours of goodness. And by goodness I mean good enough to fool most of the people most of the time. I mean I AM doing better. Crap, I am doing better and better every day! But I am not "good." A morning at work is exhausting. (One of my doctors compared a few hours with Sarcoidosis to running a marathon. "And then," he says "after you run an entire marathon (my equivalent of two hours) imagine them saying 'Now go run another one.' And that is what it is like when you try to keep going. It is so so exhausting. You do hit a wall.")
As it gets closer to noon my hands get shakier, my legs get heavier, and my chest and stomach (which are still numb from January) start the transition from numb to painful. But from 8-11:30 I have energy, I look pretty darned good and attend all the meetings, get my stuff done, etc.
So it is no real wonder that one of the issues I read about Neurosarcoidosis as well as just general Sarcoidosis is getting people to understand that, well, you are still fucking sick! I may look and act okay a few hours out of the day but all y'all at work get the good stuff. And I know I don't appear "that" sick at work, but I get a lot of comments:
- So you're better now right?
- Oh, so when will you be all better?
- Wait, did you just say you are going to have to be on these meds for the rest of your life?
- So you ARE going on the White Water River Rafting Trip with our department tomorrow right?
And I love everyone who is making these comments...I mean it means they care about me! Which is awesome! And you guys are all good news! But nope...I'm not all better. Getting better to be sure. But I am coming to terms with the fact that I don't get to get all better.
So while I may appear all good and raring to go at work, if I don't get home in time, or get some sleep in, I am too shaky to drive myself home. So monitoring when I get home, and understanding my body is a big deal. Yesterday was a typical day at work, nothing exceptional, and everyone thought all was good.
Then I came home and slept for 3 hours.
I tell people about my half day work schedule and coming home for naps and I tend to hear the same thing "Damn! I wish I could get a schedule like that!" And they laugh a bit. I would give just about anything to be off this schedule. It is getting incredibly old. As is dealing with this disease.
I missed a family gathering in Connecticut at my sister's place recently. The only reason I missed it is I am sick. It really, really bummed me out and I thought about them the whole time. But with fatigue, exhaustion, no immune system, and a range of other things my health prevented me from being with my family. This is the first time ever something like this has happened to me and it really bummed me out.
Now I am investigating more about my disease. It isn't pretty. I look "all better" but there are serious things that can happen to people with this. And that is starting to freak me out. This disease can kill you. Whether it is tomorrow or in 50 years who knows? But hey, have fun thinking about that one right? Oh, and if it doesn't kill you, there are the grand mal (sp?) seizures that can happen. Not to everyone, and maybe tomorrow, maybe never, but then again, it is always fun to fall asleep to THOSE kind of thoughts.
So I have this kind of sense of gloom and doom to deal with, push aside, come to terms with, what have you, and then I go out and about and people think I am all better. And it is hard. But I AM getting better. And coming to terms with a new normal is going to be necessary too....but dealing with this every day is exhausting....but I am workin' on it.