Saturday, March 28, 2009

Home!

It's officially been 48 hours or so since I was discharged.

Overall...I've been feeling pretty decently. I've been a little tired every once in a while, yesterday especially for some reason.

The thing I was most afraid of...breathing problems...has been great. No issues whatsoever. Haven't needed a treatment or to use the MDI (inhaler). I've been a tiny bit short of breath occasionally but that's after or while I was doing something like carrying something. Just sat down and I was good in a minute or two. Been checking my own lung sounds...no crackles or wheezes to speak of...still no (or very little) sounds in the bottom left.

Had some coughing fits yesterday too, but those were short. None today.

The other thing I was to look out for was the heartburn. Woke up with it yesterday morning and was dealing with it on and off all day yesterday...but doing good today.

The rest of the time I've been making appointments and whatnot. Next week is pretty full up. Have to drop in for a quick fingerstick on Tuesday for a blood glucose level. Wednesday is my PET scan. Thursday I get a med port inserted in my arm. I think they're calling it a "pass port" or something normal like that. Still a central line so to speak, but doesn't require sedation or anything like that. If it does...no chances...I'll get a PICC inserted. Not going to La La land with one lung. Hmmmm...oh...Friday is my second dose of chemo. Yay!!! I'm so not looking forward to that...well, I am...but, you know what I'm trying to say.

Other things? Will have a call back from Dr. Al-Katib's office (over at St. John's) on Monday. Prudent to get a second opinion. They're gonna wait until after the PET but possibly Friday after chemo. As far as I'm concerned, as long as I'm not crappy and whatnot, I'll go. The doctors said I'd probably feel like a bazillion bucks after chemo because of the IV steroids...so I'm looking forward to seeing him. Supposedly one of the best. I'll let him have a crack at me.

One thing that does hurt so far has been the pocket book. Even with insurance...I spent $480 in co-pays to get my scripts filled...not including the Neulasta (for boosting the WBC after Chemo). Don't need that one yet..not until Saturday after chemo. That one is gonna kill me...and I'm not talking about the side effects (ARDS, DIB, SOB are my red flags on the side effects)...the co-pay is $662 and change. I almost choked when I saw that!

Other than that...surfing on FB, checking on BCBS to get a benefits package so I know what I'm entitled to. Just little things that might help. Nicky and Kimmy and Megan have been on my ass big time. Well, truth be told...all you guys have. And I'm very appreciative. I know and understand how many lives and friends and family are affected by this. I'll promise you this: I will go and get the best treatment that I can. Period. I know that some of you think I'll go back to being just Mikey and being passive and selfless (unless I'm teaching or saving someone's life).

This is a life-altering thing. It's gonna take some time to think selfishly. I don't think you guys can drive it out of me totally (I won't let you). But, I'm gonna do it for me so I can do it for you. I owe you guys at least that. You won't let me fail. If you guys don't think I'm thinking right, just give me some time...I'm coming around. It's alot to just put on a plate...even for me...and you guys know how much I can eat!

Ok...enough for now...time for dinner...that's the best thing about being home...good food! Chuck and Deb and Trina made it a little more homely with some home-cooked meals. Pulled pork, beef barley soup and chocolate cake! Great stuff!

God Bless!!

What I'll do for now...

Not that my blog will take a back seat to anything, but I do have a bunch of stuff going on that commands my attention.

For the time being, I'll be posting my Facebook updates from my notes section on my blog. It seems to be a good way to save a little bit of time and not to repeat myself.

I'll still throw in my odd-and-end stuff on my blog. I want to continue my favorites and I've got other stories to tell and memories to ruminate about. Those I'll throw in between the NSHL (Nodular Sclerosing Hodgkin's Lymphoma) updates.

I've just got a lot of reading ahead of me to find out as much as I can about NSHL, my particular condition and my treatments and what lies ahead for me for the forseeable future. That takes a lot of time and energy.

All I did...

Here I am...just got off the phone with Andy and Nicole...she figured out how to do a 3-way call (I don't even know how to to that), trying to regain what little composure I have left.

I've been reduced to a blubbering idiot a few times already these past two weeks...Nicole and Andy did it to me again. Just about an hour ago. And that was after last night.

I wish I could've gone to the hockey game. Well, if you don't know yet...we won. Then I get text messages from Frank and Andy saying that they won and that they dedicated that game to me. Of course I'm getting all emotional about that. I've been doing that alot lately...I'm beginning to think I'm just a big sap. :D

I keep telling myself..."all I did..." All I did was sit on the bench with those guys, keep a stopwatch, call out line changes and fill the water bottles. "Coach" Mikey. I was happy to help.

Just like everything else..."all I did was..." help my students study; take the garbage out on Sunday mornings when I got to work; stay after work talking to anyone that wanted to stay and chat; listen to someone bitch about this, that or the other thing; help someone get their truck together after a bad call; help out in the trauma room with a bad patient that I or another crew just brought in; made my partners/students/fto-lings learn not just the what, but the why's, the how's, and the when's; ask about your family and your husband/wife and your kids and make sure that you knew that they were important to me also; be "Uncle Mikey" to a bunch of your kids just because I am (still acting like one) a kid; Hang out at the bars/restaurants/clubs and be the last to leave nobody should leave alone; stay after work, or after class just to go over or review that one little detail so that proverbial light came on; let my students stab me repeatedly trying to get their IV skills up to par; I think I can keep going on but you get the picture.

All I did was do what I do like I've done for many years and will do for many years to come. That's what I do and I don't think it's all that special. I guess I'm wrong.

I'll let Nicole and Andy provide the details...but keep the May 3rd open on your calendar. Apparently, a bunch of you went and did some stuff for me. We have a hockey game that day. I am sooooo looking forward to it...mostly because you guys are gonna be there.On the medical front...gonna be a busy week. PET, med port, chemo, second opinion...I'll keep the updates coming!

God Bless!

My Ongoing Saga...

Well...(if that wasn't a pretty deep subject)

It's Saturday (March 28, 2009) and I'm under self-imposed house arrest.

Recap:

Tuesday: Semi-busy day, running around. I had to run into Regional really quick for a blood glucose fingerstick. 167 mg/dL. A bit high for me but I was finishing up my solu-medrol dose pack and steroids tends to make blood glucose run a bit high. If my sugar had been over 180, then I wouldn't have been able to get my PET...I think it's a matter of the fact that they inject me with radioactive sugar water.

We ended Tuesday on a fantastic note. Rob and Pat Willoughby graced my parent's household with their presence and their cooking skills. Just a phenomenal dinner. Nicole also came over with Rylee. Just utterly fantastic food. Indian. Homemade cheeses, lamb, saffron and yellow rice...and so much more great food. Great company.

Christie Gordon also stopped by to drop off a book. "The Last Lecture" by Randy Pausch. Why is it that all the women in the house (Mom, Pat, Nicole, and Christie) knew about the book...I must live in a cave occasionally or something. Anyways...just a phenomenal book. The author is (well, was...he passed away) a virtual reality professor at Carniege Mellon who was diagnosed with terminal pancreatic cancer. He was given the opportunity to provide a "Last Lecture" and did so..celebrating life. He wrote a book about it (with the help of a Detroiter journalist). I recommend it!
Wednesday: Woke up with bad heartburn. It was ultimately worth the pain. Luckily it went away by the time I had to go to do the...PET scan was first thing on Wednesday morning. Blood glucose was 89 mg/dL...right where I like it. Pretty boring for the most part. Get injected with FDG (radioactive sugar water). I'll say that it was the first time I ever saw a shielded syringe though...kinda neat.

Then you sit on your butt for an hour to let it circulate. I knocked off about half of "The Last Lecture" doing that. Then you get scanned for a half hour. Then I went home with instructions. The one that stood out for me was avoid children 13 and under (because of the radiation). I thought about running thru a grade school for a split second...that lark passed quickly. Getting arrested is not on my list of things to do.

Finished off Wednesday by going to the Shorewood Kiwanis Annual Wild Game Dinner at the Polish-American Club at 14 and Hoover area. Just great food. Not as good as Rob's...not even close...but different and good just the same. Elk, moose, rabbit, phesant, boar, and venison were just the tip of the iceberg. It was recommended to me that I premedicate myself for the heartburn...did that. WOOOOO. Great idea!

Thursday: Arrived at Regional...got signed in quickly...sticky note on my chart (ironically enough) was to cancel my blood draw and go right to Special Procedures. So I did...Mom had to come with me to drive me home. Got me on the table at 0915 and started working at 0930 (the doc...not me). I thought I was awake for the entire thing, but I thought the time went by pretty quick. Apparently I wasn't...and apparently I'm really a lightweight. A milligram of Versed and I was sleeping like a baby. They wrapped up at 1040 and now I got a med port in my left bicep. Hurts like heck. Discharged with Motrin and Keflex.

Friday: Wooooo! Next chemo treatment! Or so I thought. Arrived at the Cancer Center office an hour early...wasn't paying attention apparently. Or I'm reeeaaaaly eager. Had to run downstairs for a blood draw (the ironic thing from yesterday). Result came back bad. Overall it's not too bad. My RBC, HgB and Hematocrit are decent enough...WBC tanked at 2.3k (the lowest they allow for chemo to proceed is 3k) but even more important is Neutrophils tanking at 37%. Normal range for WBC is generally anything over 6k and Neutrophil normal range is 50-70%.

Dunno exactly what's going on. I'm surmising at this point. Kimmy had a chance or two to check my CBC blood draws while I was in-hospital...she though I might be anemic. Dunno if that's true or not...maybe some truth to that, but my WBC was 6k towards the end of my stay. It's gone down since then. Anyways, I walked out of there with a shot of Leukine instead of chemo.

Have to go back in on Monday, Tuesday for more shots of the same. Basically a growth factor drug that promotes growth of white blood cells. If I had gotten my chemo yesterday, I would have given myself a shot of basically the same thing today, Neulasta. Really expensive drug...$1000 per shot or something obscene like that.

Right now I'm under a self-imposed house arrest. Ain't going anywhere. Just to make sure I don't run into someone that could give me something bad...because that would be....bad. I feel pretty good otherwise. A little achy but they said to expect that with the shot.

I was looking forward to going out and doing things. Dad and I were gonna go hang out with Wally and do some shooting after chemo on Friday and I was planning to hang out with the Hunter's today until my crappy blood work came back.

On the horizon, I have to go back to Regional for shots on Monday and Tuesday. Tuesday afternoon I go for my second opinion with Dr. Al-Katib at St. John's. Looking forward to that. Things might (secretly hoping I think) change radically from that point.

I am scheduled to go in for a blood draw at Regional on Wednesday as a continuation of the Leukine shots...but that will most likely change after the appointment with Al-Katib.

Oh...almost forgot...the best news! I got a copy of the PET scan results. Don't have the pictures, but I got the written results. As far as I can tell...the only place that the Hodgkin's appears to be is in the mass in the middle of my chest. No lymph nodes appear to be affected anywhere else. So, woe is me for the WBC, but Happy Happy is me for the PET scan results! WOOOOO!

In case you haven't heard, Nicole and Andy and many others have started a fundraiser for me...there is a link on my profile page for more information. I really didn't know what to say when they told me about it on Monday when Nicole set up the three-way call with us and Andy. I'll say this...you guys are sneaky. Managed to keep me in the dark. That's never been easy to do. But so far the response has been incredible and very much appreciated. I've been doing my part...helping with the flyer and the tickets. The flyers should be distributed starting Monday when they get done at the printer and tickets will be available soon afterwards.

And I just realized that I really hate self-promoting...it just doesn't feel right to me. I'm glad I'm not running for political office or something like that. I don't think I'd be able to say "VOTE FOR ME." I'm not that selfish (yet) to think I'm better than anyone else, or that I deserve something more than someone else.

And through it all...my phone has been literally ringing off the hook...you guys have been taking it easy on me today so far. Text messages are streaming in and you guys are gang-tackling me on FB. I can only say THANK YOU!

God Bless!

Friday, March 13, 2009

Kicking Hodgkin's Ass!!

Sorry folks...I got sidetracked.

Right now, this very minute, I'm receiving the last dose of chemotherapy tonight. We got a late start. We started with some Decadron (steroids), then Zofran (anti-nausea) and then four chemo drugs: Adriamycin, Bleomycin, Velban and DTIC.

So...unless you're on Facebook...you're probably wondering why I'm sitting in Mt. Clemens Regional Medical Center room 409 getting chemotherapy. Well...I guess it's time for a little story.

This story starts some time back, the exact date is unknown but a good guess would be within the last year or so.

In an unfortunate series of random events or periods, I was having some issues. Fevers, night sweats, aches and pains, flu-like symptoms, tiredness and a increasingly more forceful dry cough (after I quit smoking the day after Thanksgiving) were popping up here and there, along with other mundane complaints. I took care of them the best I could, but in retrospect, there were a lot of those kinda things that occurred too frequently to be merely circumstance.

The shit hit the proverbial fan this past weekend, on Friday (March 6). It may have even started the night before. I became short of breath. I really couldn't breath really well at all. In EMS circles we know the patients that have a history of emphysema or bronchitis that get really bad have the same problems: they get winded after taking a few steps, they can't lift or carry things without getting winded, they can't talk for very long without getting out of breath. That was me. It wasn't too bad at first but it got worse as the day went on.

I had considered talking with one of the ER docs but I really didn't exert myself too much and toughed it out (stupid me). I was going to go to my personal physician on Saturday morning after work, but I ended up having a late call and then I was exhausted when I got home. I fell asleep and never made it. In fact, I slept a good portion of the day. I toughed it out Sunday and went back to work Monday. That was a busy day and I was hurting bad. I was constantly out of breath, but I kept on plugging away. I went to my doc's first thing after getting off of work Tuesday morning. I was out of breath just driving to my doctor's office.

I immediately had a chest x-ray at my doc's office. He pulled me into the consult room and threw up the x-ray. "Holy Shit" were my exact words. Dr. Emerick said he had said the same thing. The right side of my chest looked pretty normal (nice and black). There wasn't any black to see on the left side of my chest (white is bad--it usually means fluid or other (bad) stuff in the lung). The left side was totally opaque (white) and even more disconcerting was noting that my mediastinum was shifted to the right side of my chest instead of being in the middle like normal (the mediastinum is a loose term for the area in the middle of the chest under the sternum and includes the heart, the aorta, and the superior vena cava. Not good at all.

Up to that point, I was pretty certain that all I had was pneumonia and that I'd get some steroids, some antibiotics, maybe an updraft and possibly an inhaler. I'd go home, have a couple of days to get better and I'd be all fat, gum and happy. After seeing the x-ray, I knew that would not be the case. Something was waaaaaay wrong. Dr. Emerick called ahead to Mt. Clemens Regional ER and I was on my way. Stupid me, I decided that I'd drive to the ER rather than take the offered ambulance ride.

I got to Regional's ER Triage area and I didn't even make it to triage. My friends Jason and Pam recognized me, ordered me to a wheelchair and threw a pulse ox on me (I think it was reading 87-88%)and wheeled me into the trauma room (where they treat their priority one patients).

Let me tell you now being a paramedic doesn't have many advantages, but this is one of those times that it does. The response, the generosity, the love and the caring has been overwhelming. I can't compare it to anything that I've ever experienced in my life. I hate to compare it to the stereotypical "rock star" life (since I'm so NOT a self-centered ass like most of them), but that's what it feels like. I haven't wanted for anything. You guys and gals have been tremendous!

I got fast-tracked almost immediately. IV, O2, ECG, 12-lead, chest x-ray (again), IV steroids and breathing treatments in a row. Then I went for my chest CT. That's when we became concerned. The CT revealed a mass (approximately 11 x 13 cm) "wrapped around my heart and my aorta" and compressing my pulmonary arteries and bronchi leading to my left lung, collapsing my lung. Basically, I'm functioning on only one good lung. The mass itself is not completely encircling the heart or the aorta, it's more like if you were to pick up a glass with one hand and the fingers go around the glass to hold onto the glass properly to prevent it from falling.

At that point, I was on the A-train to intensive care. I spent a few more hours down in the ER while they debated a few orders and had all the primary doctors come in [oncology (cancer), pulmonology (lungs), cardiology (heart), internal medicine (organs) and hematology (blood)]. I was wheeled up to ICU 17 and I got settled a little. I had full monitoring of all vital signs, ECG, and pulse oximetry. Basically chained to the bed. As I start to right this (two days later), technically I still am; but what they don't know won't hurt them either.

I've been having a steady stream of visitors as the word gets out. All the ER personnel, nurses, doctors, techs, x-ray, labs, RT's, security...everybody. Mom and Dad and Nicole are at bedside. Dad's freaking out but he still has time to ask if all the pretty ladies are available for number one son because he still wants more grandbabies. So I'm going through all of them as they come by...married, two kids....married, three kids...single, seeing someone....single, might be available...married, no kids, etcetera. That's my dad. Middle of a crisis and he wants more grandbabies.

I was NPO from the minute I entered the ER (Nothing Per Oral for you non-medical types). Can't eat or drink anything and I'm starving. My stomach was full...full of air. I had finally noticed that my breathing was so bad that I was overcompensating...I was trying to breath so hard that I was gulping the stuff besides breathing it. Burping all over the place. My coughing fits were frequent and painful too. But everybody was keeping me laughing and making me talk too much. That caused my nurses to run in and pipe me down because I kept on desatting, my pulse ox was dropping like a rock. Then everybody got into the act. I start talking too much (like that was hard to do) and then everybody was telling me to zip it. My pulse ox never made it past 94 the rest of the day.

Kimmy kept me company on her breaks, God bless her sweet soul. She'd come up from the ER for her half hour and sit at the bedside and hold my hand. I don't think I slept at all that first night.

First thing on the agenda for Wednesday was the most important thing that could be done...find out what the heck was sitting in my chest. I saw most of my doc's that morning and then I went down to CT for a CT-guided biopsy. I got wheeled down for that, got a couple of milligrams of Versed and don't remember anything after that. I woke up with a hole in my upper chest and a nice little bandage covering it. Wonderful drug!

I was finally off NPO status, so I got to eat lunch and dinner before going back on NPO status for a test the next day. Wasn't really great food, but it wasn't bad either. It was food was the important part. And I had some wonderful coffee!!!!

Ok...gonna publish this one...otherwise it will be another few days before you all see something. Look for part two soon.

Sunday, March 8, 2009

Thunderstorms

We had a thunderstorm today. The first one of the season, I think.

I recall that I used to be scared of thunderstorms. I think it’s a prerequisite that small children are scared of thunderstorms and its companion, lightning. Unwritten rules of childhood or something like that. I outgrew it eventually and I’ve come to respect thunderstorms.

I’m not going to say I love thunderstorms, because as I say that, I envision myself prancing about like a ninny in the middle of a thunderstorm holding a golf club when I say something like that. I also don’t like them so much when I’m driving and I have my wipers on warp speed and I still can’t see crap out of the windshield. I also don’t like thunderstorms when the basement floods.

Therefore, I’ll respect the awesomeness of the thunder and lightning shows that we’re treated to occasionally during the spring and summer months. We always knew when the angels were bowling and when they got a strike! I sat by the window and watched for the big flashes of lightning, hoping to see where it struck. Then the thunder clapped and I became a little scared until the next lightning strike. I was also amazed how dark it would get during a storm. At night, it made me wonder if the dark just got darker. I don’t think I ever got that question answered.

I especially liked the flooded streets afterwards when we (my brothers and I) were kids. We weren’t lucky enough to be able to afford a pool, so we took advantage of any standing water that we could, frolicking and playing until we were soaked through and through.

Racing paper boats (toothpicks, popsicle sticks or even just regular sticks or whatever we could find that would float) from the middle of the street to the drains was pretty cool, unless a car came and swamped us as it drove by. We also liked mucking waterlogged worms. Back then, the entire world was our playground. Everything was fascinating; everything was worth exploring. As I grew older, I liked going outside right after the rain had ended, searching for that summer “just rained” smell that summer is famous for.

As a teenager, I started hanging out in the garage with the door open, watching and listening to the rain, and the thunder and lightning. I had learned that thunder always followed the lightning because the speed of sound was a lot slower than the speed of light. I also learned that I could kinda measure how far away the storm was based upon this phenomenon. I’d start “one-Mississippi, two Mississippi…” until I heard the thunderclap after the lightning flashed.

I like the thunderstorms that accompany the tornadoes in the middle of the summer. The clouds become a sickly green color. If you were lucky, you got to see the hammer and the anvil that seem to hide within the clouds themselves. You felt the lightning strikes and the thunderclaps rattled you to the core, making your bones ache. So loud!

Then the winds would pick up and the sky would get darker and greener. The rain would start with sprinkles and then, if you were really fortunate, the hail would start. That’s when you knew you had to seek cover, lest you looked like a big huge bruise the next day. We’d turn the radio on at that point (unless it was already on), listening to hear where the tornado hit and what kind of damage it caused. I remember generally being disappointed by the lack of damage that the storm had caused.

Thunderstorms make me think. Is it the rhythm of the raindrops? Is it the hammer beating on the anvil? Did Saint Michael get that strike to beat out Saint Gabriel in a heavenly game of bowling? How far away was that lightning strike? What or who did it hit? Is there an electric acrid smell where it hit or does it smell more of ozone? Who’s lining up all those positive and negative electrons? Why wasn’t I invited? What’s the meaning of life? Such questions deserve answers, but will we like the answers?

Nowadays, I tend to be generally annoyed by thunderstorms. I think that’s the curse of growing up. Every once in a while though…I remember all of these wonderful things that occurred when I was growing up. That’s when it’s time to forget about life for a while. It’s time to play. Anyone for a paper boat race?

Thursday, March 5, 2009

Astounded!!

Well…I was going to write about a book I’m reading (one of several—four I think), but it seems that I will change tack (once again) to something completely different. Sometimes all it takes is a conversation, a phone call at an opportune time. Sometimes it’s a nudge, at other times it’s akin to a shove. This was decidedly a push.

It started with a conversation on the phone. It didn’t end there though. I was catching up with a friend from World of Warcraft. Yes, I even have friends on WoW! Sure, it’s “just” a game, and I can spend multiple hours of a day playing it, but the friends I’ve made are just as concerned and thoughtful. It really is somewhat nice to slip away into a different world every occasionally.

We were chatting about my stolen truck (still no word…yet), and it occurred to me that I used the same word multiple times and that struck me as a bit strange. Nevertheless, I couldn’t really come up with a different word to describe the feelings that I was feeling at the time. I was [still am] simply astounded that my family and my friends were concerned about me. Little old me. My soap opera life. That they wanted to know what was going on with me. To provide offerings of help in my time(s) of need. That they were concerned and took the time to say so. That they meant it. That they truly care about me, love me. Unexpected. Maybe not.

I felt bad, because I thought that my family and my friends would be offended by such a thought as me being astounded by such things. I didn’t know what to think next because I thought that I wasn’t astounded by it all, precisely for the fact that they are my family and my friends, and such things as kindness and love and caring and concern and friendship are common things for the companions that I keep. I’m beginning to think that such things aren’t as common elsewhere. I hope not.

I was then humbled by my astonishment that such a thing was truly possible. How is such a thing possible? Moreover, if such a thing is possible, why do I see a shortage of it everywhere else? [Thus ends the socio-political commentary that could happen—would go on for weeks or months on end—with nothing getting accomplished—before it even starts. Maybe another day, another blog.]

I was warned by my parents, my grandparents, my God and my other authoritative figures in my life (including the Bible) that what you put into something, you get back ten-fold. Good or bad. I honestly believe (and several of you have confirmed this fact of life for me) that is precisely what is occurring. I would disagree and I might even throw a little tantrum if I could explain it any other way. I can’t. I can’t measure the value of friends or friendship. They just are and they exist. Simple. It isn’t that simple.

I don’t really know how to explain what I’m thinking right now because it is so extraordinary as to be ordinary. As plain as the nose on my face. I am not an extraordinary person. I am an average Joe. I grew up in a pretty normal household, went to public schools, went to church, got a job…ok, ok…I don’t have a wife yet…or kids…but I surely don’t think that’s truly any different than anyone else I know.

I learned to treat others with respect, follow the Golden Rule, don’t do bad things, and help those less fortunate than I. Simple things. I am, once again, astounded that a simple person as I, doing simple things, can truly have such family and friends as these. I didn’t do anything out of the ordinary. If I did, then maybe I should be a little bit scared.

Through it all, I realize that I am blessed. I’ve realized it many times. I try to express my gratitude to my friends and my family for what they mean to me and I fail every time. I’ve failed again. There are no words that can describe it. I’ll keep trying.

I truly do not feel worthy. I remain humbled.

God Bless you all!