Stagestruck's blog

Sizing Up

I have to say, it felt really weird not blogging yesterday, but between the marathon I ran and my kickboxing session, I really didn't have time :-)  I did spend the day with my Mom and she actually managed to get me out of the house, and of course my first venture?  Why Wal-Mart of course.  It felt good to get out, and no I did not ride a scooter this time, even though I could have.  I enjoyed my walk.  I don't feel like I pushed.  It was tiring but refreshing!

The kids put the tree up yesterday and started to decorate a bit around the house.  I'll take pics and post for those of you who care :-) My outside is still scrambled but I think I will try and start putting things in the ground.  Nothing is heavy and I won't do anymore than I have to... 

Now for why I really am writing...  My Doctor (H) called me today with some information.  The lab sent some results and I can now put names to the cells that picked the wrong body to invade.  It is a mix of good news/bad news (as every sort of news seems to be) and the more I investigate them the more I will know which side the scale favors.  I have a very aggressive tumor that covered the majority (90%) of the mass called an embryonal carcinoma and a less agressive (10%) teratoma tumor.

The embryonal is the fast mover.  Its the one that caused the tumor to grow so quickly.  The nice thing about this is that in most cases these are treated and respond to chemotherapy quickly.  This is also the one that they think has entered into the lymph node in the pelvis.  It is Docs hope that/belief that this cell, once treated, will disappear after chemo allowing the markers to return to normal.  It is still possible that if it does not respond that they will need to perform a retroperitoneal lymph node dissection (RPLND), which removes the lymph nodes that the tumor typically spreads to. This surgery is often performed to evaluate tumor spread and lower the risk of relapse. I won't know exact specifics until Wednesday but it is enough information for me to start exploring.   He did say that he was going to contact an oncologist he likes and to expect a call very soon as he wants to get this ball rolling.  However, no decisions will be made until I talk to Doc (A) about it and assess the information with him.  If he thinks that the Oncologist in Frederick will be better we will look at that one because, quite frankly, I'd rather be closer to Frederick and work.  There is also the prospect or visiting his Dr Friend in Philly for a second opinion, which is what I am kind of counting on. I guess it depends on if it is all the black and white. 

So as far as that news and all is concerned I am fine.   There really wasn't anything that they could tell me that would "scare" me because I will beat the snot out of whatever it was/is.  The good news was also that I asked him if he thought that there was anything that would prevent me from going to work on Monday, and he said No, just don't do anything strenuous. So unless anything freakish happens this weekend, my sites are set on going in on Monday. 

Thanks to those who called yesterday.  I had a couple of good laughs and it felt good to laugh.  I skyped with Nessi (my German daughter) yesterday and today and that was really cool to think that I video conferenced halfway across the globe.. for FREE but then realize how much I pay for my landline and wireless phones.  Something just doesn't add up on this one.  So I have rambled long enough today.  I am going to do some more research on these vandals in my body and see what I can see.  Thanks for reading! 

About What?

So the last time I think I typed was 3 days ago... Hold on I should check...

BRB... 

OK, yes, It was Wednesday and now it is Saturday, no wonder I am losing reader interest.  My bad, shant let it happen again.  2 days tops unless I am put on the PUP... (that is Physically unable to Perform- a term used for Football players, but could also be applied to many others, in fact, I'd rather hear PUP than ED in those commercials, I think it's more of a man term anyway, especially if Football players are placed on it.  I guess women could be put on it as well, but then we'd end up hearing things like Puppy or something else cute and then there goes the whole man idea.... but I digress. I should really close my parenthesis now.)

So Thursday, since I missed that day, was a day meant to go to the second Urologist in Frederick, be home for the repair guy, and attend to any other crucial appointment details necessary (i.e. finishing Christmas lights)  1 out of 3 tasks accomplished ain't bad, yes?  The Urologist rescheduled for Friday at 1:30, It was too damn cold to do lights outside but the repair guy came and are stove and over the range microwave work again!  So, of course, Noah and I wasted NO Time in making Pumpkin Bread, muffins, bundt cakes and mini muffins (which lasted a remarkable 2 days ((although there is still 1/2 a loaf left)) which we have had the kit since Halloween)

Friday, was crazy.  I went back to school, (missed it terribly), and the day was over before I knew it.  I had my EDT (?) and diffusion test which basically measures lung capacity, etc. scheduled at 3.  The Frederick Oncologist Appt was scheduled for 1:30.  I would need to be done by 2:00 to make it to Htown in time for my test, which had to be done before starting chemo on Monday. I decided, after much struggle, to cancel the appointment in Frederick, and go with instinct and go forward with all the Hagerstown stuff.  It would be ideal if I could receive treatment in Frederick, but if it was meant to be it would have worked out.  So, I ended up writing my sub plans for Monday and the next thing I knew it was 1:20 and met my brother for a quick bite to eat before I went up to Hagerstown.  

Now this test was interesting.  As I said, the Oncologist wanted to establish some baselines in regards to mu Pulmonary functions before I started receiving chemo as one of the drugs has been known to cause lung toxicity.  Earlier this year the school hosted a health fair (or was it last year?)  and one of the tests measured something in my lungs and the results said that I had the capacity of a 60 year old.  That bothered me. SO going into this test I didn't have very high expectations.  The first test consisted of breathing into this tube.  Expelling every last breath in your lungs, inhaling til they were full,and exhaling as fast as possible until it was out... I did this first test 3 times.  Now I don't know how many of us realize (thanks Julia) but we use very little of the capacity of our lungs on a daily basis, so there is a lot of stale air that sits there.  So the longer you exhale and rid your lungs of this dirty air, the more fresh oxygen fills your lungs upon intake.  Fresh oxygen also has a way, at high quantities, to give you a head rush and well, a natural high.  I could not believe how dizzy, close to passing out I got as I performed this test, as well as 5 others.  Each test consisted of 2 attempts with a couple of them adding a 3rd. I was rolling.  AND I highly suggest everyone "rinse" their lungs out at least once a week (no more than that though) it is good for you!  Each of my tests came back at least 130% over predictability (based on age, weight, height, etc.) and as the analyst said, after I said so how are my 60 year old lungs... "Well" he said "Only if those 60 year old lungs are masquerading as a 28 year old"!  and after confirring with him, he admitted that the readings are normally those found in 28 year old healthy lungs.  At least something physical matches my mental age.

So here it is Saturday Night.  The family and I all went to see "The Blind Side" and we enjoyed it, and I really enjoyed being together as a whole family seeing the movie.  I haven't read the book, but will put it on my list of books to read during treatment.  I actually went up on the roof today and hooked some of my lights up, I still have a row of lights on the 2nd tier but I am thinking of letting that go until next time.  We are suppose to have some weather in tomorrow so I wont be able to get up then.  I grilled burgers on the charcoals tonight, which we haven't done in some time, and rather enjoyed the warmth of the grill as it was cold out again.  I have one more day until Treatment starts and thank god for the NFL and my Sunday ticket to preoccupy me.  I have also had a lot of questions about what to expect.  I think that is the worst of all of this.  The not knowing.  I can't stand that.  Even the few I know have had it, they all experience something different.  Some lose hair some don't.  Some lost energy, some gain it.  Some can't taste etc etc.  Everyone reacts differently.  But the thing I have found that I think will be the most important thing for me is  a former student who was diagnosed with a Hodgkins Lymphoma and received similar chemo as I will be receiving.  She has answered every question, offered suggestions, tips, and provided me with so much inspiration.  Our roles have completely changed as I feel she is the teacher and I the student, and I think I am incredibly lucky to have reconnected.  

I went to walmart and Kevin and I both had our haircuts.  I went with the high and tight shave, as I figure why not, right, if its gonna go, I'll help it out a bit.  Maybe I will out smart it, leading it to believe that it's already gone, or there's not much there for it to worry about so it'll skip right over it. You never know.  So this is what I am starting with...

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Not much it can take, right?  I thought about doing my eyebrows but opted to take my chances with that one instead.  So that's it for this one.  Not sure if Ill have anything tomorrow, but I know that I will kill a lot of time on Monday working on the computer (yes, ATPers I will finish your script!) so look for a new entry on that day.  And who knows I should just go with the video pod right from my room (if I won't be bothering anyone) that could be interesting and fun!  Thanks for reading everyone!
PS KBJ, you are an incredible inspiration who I respect and admire for all you have been through and all you are going to do!  

Cocktails and Dreams

 

Welcome to the Walter Marsh Cancer Center!

 

Well isn’t this a barrel of monkeys.  First I can’t access the net, and I can’t even get a signal to the 3GS service right around the corner.  What kind of place are they running here when I can’t have access to my public?  Geesh, so I guess I have to old school it, type, copy and paste, and send later, but I think I can still tape my vidcast.  Ill try it later.

So I am here and the following pic shows the entrance to my new home for the next few weeks.

Some unfortunate news met us when we got here.  The tumor markers came back and they were still very elevated (in the 7000 range).  What does this mean, well I am no longer a 2 b classification, but am now a 3 a which puts me in the intermediate range and it also means 4 rounds of this stuff, so not 9 weeks, but it is now 12 weeks.  So be it. I still think based on the ass whooping I am going to give it it is gonna wanna get out faster :-)

Of course, I wore my Cowboys hat and jacket today and it seems like half the nurses are Skins fans, so I have that going for me.  That and the fact that the Cowboys single handedly ruined any possibility of a good week for me has me on a great roll!  I just decided that I will have to decorate these already drab rooms and add some shall we say frou-frou (you see Linda, I don’t forget) Always need more frou-frou.

So I am sitting here, arm taped up, fluids flowing.

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Received some nausea stuff called Aloxi and Decadron to battle some side effects.  I took an Ativan before we left, so I should be good to go.  Dr. Feelgood came to see me and went over all the meds.  He was very encouraging, with the prognosis and feels real good about the prognosis.  

A few of you have already told me how wonderful the staffs at these centers are and my first instinct is that they are absolutely great.  I have already begun to introduce Nurse Renee to “That’s what she said” as she has already set herself up for 3 deliveries.  The first was a gem, but I had to stop short, then the 2nd time I said it loud enough for her to hear but then I explained its meaning.  The 3rd time was a full delivery and that is when she got it... Good stuff.

This is Renee... She was my first nurse, and we had to come to a few understandings... First, I don't like my picture taken and if I get mine then she had to get hers :-)  2nd If a Redskin fan and a Cowboy fan are forced to provide treatment to the other, a little compassion must be displayed toward the losing teams, consider it like the probowl when opposite players are forced to play one another for the common good of the division.  I am not a fan of tomatos and onions (we haven't really got to that, but it will be important for her to understand) 

My other bloodwork came back and everything else fell into the normal range... My RBC and CBC are very good, and even those numbers that were a little high have pretty much fallen back down.

The cisplatin is going in now. This is the one he said usually causes all kind of crazy things, so we will see.  No seatbelts in the chair so I don’t expect to be launching anytime soon.  Kind of anti- climactic (famous last words).  

Did I mention my chair has a Massager and a heater... kind of cool.  The massager needs to be a little lower and offer an “oil” option, but I will take what is given.  

3 hours down, about 1.5 to go.  The whole bag of fluids given to me a little bit a go, well yeah, they are seeking freedom, so I will have to make that arrangement.

Arrangements made and thanks KBJ for the tip on the loose and easy access clothing.  It did make a difference (much easier). 

Getting to that hunger stage.  From what I hear I need to enjoy foods this next day or so before I lose my taste for them, also small meals (less to throw up I guess :-)  ) at least thats my interpretation.  So if I go out to eat I will definitely be asking for the chemo discount.  I figure it should at least be half off...  Back later with the end of day 1 report... Need to do something else before this becomes a book.

Follow the twiiter link, there are some fun 1 liners that pop in there.  Theres a link in my preferences or something like that...

OK last bag of poison to go... Kind of gives to meaning to the phrase “pick your poison”  I think.  This one is the Etoposide.  So with this one I lose all my abilities to breast feed... I guess thats ok.  I also noticed that with the cisplantin a n effect is increase of appetite and then with this one is loss of appetite... I think it would be fun to see them fight it out and see who would win.  I mean I was hungry before, but now I am not, but I think that has more to do with the sandwich and soup I just ate, and not the drugs, so yeah about that....

Have about 30 minutes to go.  I am working on the script for my students, and I have the first 2 scenes done.  A little slow going I’d say, but the central idea is there and now I just need to fill in the  blanks...

Ok so I am out of there and sitting at home completing this entry... Nothing like a little more bad news to end the day, as it appears that my appointments this week will all need to be in the early to late morning times and I won’t get to get into TJ this week.  I am so utterly disappointed. I really was hoping for some normalcy to return...  Next Monday should be fine, and Tuesday should be fine, but as far as this week... I don’t think so unless someone works a miracle... So I guess Ill be writing tomorrow as it is a longer one (which is because of my reclassification)  Til then, Happy 3rd day of Channukah!

Nottabuttating

Hey hey, sorry for not getting back writing more last night and instead making you decipher half asleep end when you pass out writings.  I think the typos are funny so I am going to keep them like that for nostalgia's sake.

Yesterday was an interesting day.  Sooo slow.  My nurse (I call her Julia, but Renee swears there is no Julia on staff) seemed to be operating in slo-mo.  I did do a a videoblog which I will post at the end of this one for yesterday so you'll get a sense.  And to clear the picture a but more, yesterday 6.5 hours, today 5.25 hours.   I didn't do anything differently and there was no extra meds, so you do the math.  

I came home attempted to do some stuff, and promptly fell asleep.  I let Noah and Ally watch Aliens in the Attic with me in my room but I don't remember any of it.  I woke up a couple of times, once was the blog post another I texted somebody, not sure who, so if it was you I sincerely hope it made sense. I can honestly say, and those who see the twitter messages, I did not want any part of yesterday.  This gets old fast, and with the extra time it was taking to get done, fun was not had.

 
Today was much different.  First, I got a great room. Number 7.  It actually had a window that let warm sun in, I got 3 bars on the phone, no dsl, but I am getting used to it and some elements of home.  I asked Dr. Feelgood who I needed to butter up to score this room more often. He said he'd put a good word in for me.  And to make all even better, Nurse Renee was back and took care of me (which is how I knew this day would fly)

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I did end up sleeping 80% of the time.  Of course, I always worry that I will keep the entire ward up with the snoring, but all assured me that I wasn't a problem.  They have these blanket warmers that cook the blankets up and man, once you are under them, lights out.  I followed Tom Keirein's forecast of the winter storm slated for this weekend, and the untimely death of Chris Henry,  and I tried to help someone with a million dollars, but that was about it.  The rest was, well rest.  I felt a little better today, although I thought I was gonna lose it on my way home.  Managed to get a little MOuntain dew in me and all was well.  

So one more day before this first week is over.  I must continue to thank all of you who have been sending me the positive messages.  They mean so much and I really do wish I could get back to each of you individually, and perhaps I will at one point.  The daily affirmations sent to me by KBJ are so welcome, and I can honestly say that at this point, I feel like I have managed the first week real well so far.  Can I say that I miss school and that it burns me that there isn't a way for me to be able to go in for some time first?  I know I have said it, but it would make the day so much better.  Oh yeah and I am real close into converting Dr. Feelgood into a MAC guy, he doesn't realize it yet, but he needs it....

So I will be hoping for a restful night, a smooth Friday and a great weekend.  AND to see the peeps on MOnday.  That will be nice.

I hope you all are enjoying everything that this season is about in whatever way you do it.  It's weird how perspective can change so fast...

Oh by the way, here is yesterdays post... I look bloated (I also had to talk real soft cuz I wasn't sure who was listening!)  Not that I should care really, right.

Cornered

SO here it is another 3am post night.  That is, pretty much, the way this weekend has been going.  Apologize to those of you checking daily for lack of posts, but it was a rough one.  I have been battling flu like symptoms all weekend, nausea, heartburn, bloating, cramps, fatigue, you name it I experienced it a little bit at some point.  Nothing seemed to tame it and nothing in the way of food or drink really appealed to me, and anything I did ingest caused some movement on the reflux scale.  Then to top it off, I developed this high pitch ringing (tinnitis) in both my ears (a side effect of course, although they say to get it now is a bit early).  I just like to think that everything is moving faster and doing its job quicker hence the early affected side effects.  

I tried to write a post a couple of times over the weekend, especially since we are covered in about 20" of snow, but every time I tried, I ended up getting very uncomfortable and stopped.  I did have a very good nights sleep last night (SUnday) for whatever reason, but tonight the old every little thing wakes me up woke me up.  My dog, Brandi, may be on her way out.  She's been hacking up all night, the loud kind, which is a big part of my sleeplessness right now.  She is 16, hasn't been eating, what she does eat she coughs back up, she can't feel her bowels so she'll go outside for an hour and then come in and relieve herself, and is pretty much lethargic all day.  I know they say that you know when its time, but I am stubborn on this one.  She still does play a bit, but it becomes more and more difficult to watch her every day.  

Due to the snow, our school system shut down for the 3 days leading up to the break.  I was fine with yesterday, and possibly a 2 hour delay Tuesday but I am not sure how I feel about all 3 days.  I was really looking forward to going back and focusing on something else.  There is now a good chance that I won't see my classes again until the 11th as I start Round 2 on the 4th.  I am going to see if I can get at least a half day in that week by going in to receive therapy at 11.  I am hoping they will accommodate.  It really is a lot to miss, and I am going stir crazy not doing anything but therapy.  I do get a dose of Blithro today.  The Doc says that this is one that isn't responsible for all this cramping so maybe we will be able to tolerate it better.  It is also a very short infusion so no 5 hour day for me.  I do hope I can get some answers or something to help with these other issues.  It will be real important for me to be as "normal" as possible come the 25th :-)

So that's it in a nutshell (TPI).  3 days, not a lot of doings.  A thick blanket of snow rests outside the window and I need to sleep, somehow.  I will be sure to report back on the docs finding later today in regards to all this other crap that's going on, but not to worry, we got it cornered, which is why it is fighting back so hard.