It's been a long while since I've done an update. Ya know how it is...things get busy, especially in the summer.
I also wanted to wait for an appropriate time. I didn't quite know when that appropriate time was. First I thought it might be after the fourth cycle of chemo...then it was after the last PET/CT scan. Then it was after the sixth cycle of chemo. Now it's the start of radiation therapy. It's been busy.
Most/some of you are aware that my cancer is technically in remission. Dr. Al-Katib is comfortable calling the ball. The last PET/CT in July confirmed that there was little to no uptake of the radioactive sugar water anywhere in my body and especially in the tumor. That's usually the tell-tale sign that the cancer cells are dead. That was after the fourth cycle of chemo.
At that point I did the preliminary stuff for radiation therapy. CT's, molds and tatooing. Dr. Aref (the radiation oncologist) did his 3D modeling and decided that he couldn't safely do his thing (radiating the tumor) without significantly damaging my lung. The lung was almost encircling the tumor (I'd say close to 60% or so), which made it difficult to radiate the tumor without collateral damage. So it was decided to do two more cycles (two treatments per cycle) of chemo to try to shrink the tumor some more. Then Dr. Aref can use a smaller/tighter and less-concentrated beam of energy to get the job done without the collateral damage.
During this time, I also had an appointment with my pulmonologist to see what the condition of my lung was. Happy to report that my lung reinflated to full use (he said 98% which is damn close). I didn't really notice any significant difference but that was probably due to the chemo treatments. Both Al-Katib and my pulmonologist figured that was probably the case. Those chemo drugs take quite a bit out of ya.
Someone asked me what it feels like. It's hard to describe, but the best description I could give them was that it felt like someone or something was squeezing every single cell/tissue/organ in my body at the same time. Add the bone pain from the Neupogen shots and it really wasn't a pretty picture. It hurt alot! Some days I had to use a cane to get around, some days I was fine.
One of those things I never figured out (and the doc's really didn't have an answer for either) was why my hips kept on trying to pop out of their sockets if I moved too quickly or the wrong way. All I know is that it hurts like eternal damnation. Hasn't happened since chemo and the Neupogen shots were finished. Knock on wood!
Through it all, I tried to do as much as possible. Bowling on Thursdays was (and still is) alot of fun. It was a little tough to do occasionally. We gradually got me down to two Neupogen shots after chemo, which was a great thing since it meant two less days of agony during that two week time. Hung out with friends and family as much as possible. Even had a family reunion that turned out quite well considering how much we didn't plan it (like we usually do).
My last chemo treatment was August 25th. Since then, I've gone in for additional CT's and radiation mapping. I had a dry run on Friday to make sure everything is in place and running smoothly for Monday.
I officially have to be out of my house by September 28th. Some times I felt/wished that I could stay in it but without a steady income...it just isn't possible. I'm better off starting over. Moving date is this weekend coming up. Everything will go into storage until I can get back to work full-time. Then I can get an apartment or something and get my life back to normal. I'm also probably going to take that opportunity to move a bit further north maybe up to Algonac area. It'll be a bit closer to work and, as much as I love the city, I think I was born to be a country boy. Gimme a nice country house with a wrap-around porch and a white picket fence and I'll be a happy camper. Oh...and since I'm dreaming...a lake I can go fishing any time I want. With a gin and tonic!
Believe it or not, this past Thursday (September 10th) was my six-month anniversary since all of this happened. Well, at least since I went into the hospital at Regional. Hard to believe. March 10 will always be hardwired into my brain from here on out. Expect a party around that anniversary date. Don't know what I'll be planning yet...but I'm planning something. Or I could use September 10th...dunno yet. March isn't really conducive to parties and barbecues...still a bit snowy and cold. I'll have to give it some thought.
A couple of things on the horizon. Moving day, of course. Also, since it is six months since all of this started, I also have to face realization that short-term disability payments are at an end and I also have to expect my insurance to revert to COBRA. I do have to express my undying gratitude to my employers, Trish and Ken over at Tri-Hospital EMS for their supreme generosity. Sure, the insurance and short-term disability may be somewhat dictated by policy and the law, but they made it very easy for me to rest easy and concentrate on getting better. I was, after all, only employed there for only a month-and-a-half when the crap hit the fan.
I actually had hoped to have gone back to work a while ago. I actually started thinking about it in June. Sure, it would have only been part-time or contingent status. I also couldn't go back to working the road because I couldn't lift anything with my left arm because that's where the med port is. I can drive a desk or teach is pretty much it...maybe dispatch or something like that. The problem was the chronic fatigue and everything else that goes with cancer and it's treatments.
Now, I have a bit more freedom and ability to do so (go back to work). I'll still be fatigued quite a bit...fatigue appears to be the number one side effect of radiation therapy...but I'd love to do something, especially if I can keep the insurance going without switching over to COBRA. Hopefully part-time. That's something we'll have to sit down and discuss.
Since I've been talking about generosity, I also wanted to take the opportunity to thank everyone again for everything. Generosity, prayers, thoughts, deeds, kind words, love, friendship. There was/is absolutely no way I would have been able to do this without the support of all of you. I am, and always be, eternally grateful for everything you have provided me in these past six months.
I promise I won't wait so long until the next update!
God bless!
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Sunday, September 13, 2009
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!!
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.
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!
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!
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.
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.
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