Been here before, but...

I suppose I'm not keeping up my end of the bargain here in that I'm not doing back-flips when I get good results from my MRI and CT... I've been here before. It's good and all but seriously, I only made it a year before it was back again and I had to do the whole treatment over. That just took so much wind out of my sails that I haven't had anything like the attitude I had after the first time... frustrated perhaps, ennui of sorts...

Never-the-less, MRI and CT scans were good, nothing notable in the region and nothing changed elsewhere... Let's hope that stays that way... we'll see what happens in 3 months...

It's that time again

Well, it does only seem like yesterday that I was just out of there, but it's time to get a check up...should be cake. Things I can say... the tissues that were affected by the radiation seem to be getting more elastic/normal; swelling directly around the surgical scar seems to be diminishing; I do still get swelling below that, which my nurse suggested is the back up of fluids since there is so much scar tissue there. That seems legitimate because I don't feel any mass, and the swelling has just seemed so liquid...

I've been remiss not keeping this up to date, but there isn't much beyond the day to day going on for me lately. Just trying to keep healthy

F@(% Chemo, BTW

Yes, F@(% Chemo. That's the second time I've done 4 rounds AND made it look pretty easy I'd say. I'm done, for what better be a LONG, LONG time...

Chemo Round 8 (07/22/10 - 07/25/10)

Got up early, couldn't believe how tired I was, and made the drive to Seattle. Managed to get through traffic and the construction on the pass without any difficulty. Got to my morning appointments and then, after seeing my doctor, went to the hospital to check in. Got checked in, went up to my room, changed, and laid down because I was tired already.

In meeting with my doctor I asked to have CT/MRI scans completed on Monday 7/26, since I would be there, in order to establish baseline, and even get my Neulasta administered by a nurse, rather than self...

Ifos was started at around 1:30 and dripped for around 4 hours then that has to be followed with Mesna at around 4 hours after that. I'm not sure how in the course of those days, but somehow the Ifos started being administered later and later. I asked them to bump it back up because I'm so sick of the hospital, no offense to the staff, and they were able to accommodate me with that. Had a pretty eager "fellow," I guess, or whatever you call a doctor while they are still in some form of student status, who kept making me do different "excercises" to test my motor skills and check for swelling etc etc. Unfortunately for students, I'm a very stable patient and there was nothing remarkable that happened to me. Listen to my breathing, get my vitals, ask me to eat, chat a bit, sleep. Exciting I know...

They did have a Code Grey, which I'd never heard of before, on my floor and wing! I'm told it's a call for all available personell including some security because a patient is not quite cognizant of reality/or even hallucinating and may need to be restrained. In this case the patient needed to be restrained in 5-points and they even walked by my room surrounded by people as they tried to corral them into their room. It was minor really, but the patient was screaming and carrying on at the nurses telling them that they weren't real, that they were film crews or something. I know that some of the chemo can cause hallucinations, but I was told that the patient was a drug abuser so I'm not sure if that was their problem or not.

So, They locked that patient down and then released me the next night... I got de-accessed around 9:30, showered and out by 9:45. Drove to my pal Allan's, talked a bit then went to sleep. Slept most of the next day, ate, then went to my CT/MRI scans. Got done with those around 5 and met up with Allan and we went to Zeeks, or is it Zekes, Pizza and had a nice sit down.

Later my ride came, we dropped my niece's car at her friends, and then we hit the long road home.

And, now I just wait till I get better from all the drugs and then get on with things.

Final round

Final round begins tomorrow with an early (7:30) blood draw, then a meeting with my chemotherapist and then a hop over to the hospital for the dope.

Really looking forward to this because this has just felt so, so, so long and then I get to start doing more again. More running, funning, sunning, and gunning, I like to say, but really getting out more is the key...

Just an early drive up there in my neices car so I can drop it off or her when she comes back to the states for a bit!

Chemo Round 7 (07/03/10 - 07/07/10)

They gave me the option of Saturday or Tuesday for the admit. I'm trying to get through this stuff as fast as possible, and after all the delays, I took Saturday. I've been non-plussed with this whole experience lately and the experience in the hospital is getting to me as well so I'm just trying to get this done.

The absense of Adria in my chemo regime is noticable and nice; I'm deffinetly not feeling as near a zombie as before. Ifos still has some effects on me, but I'm much more tolerant of them. Also, I don't have to stay in the hospital as long...depending on when I go in... and that is a relief as well. My chemo Dr. is the attending at the hospital these days so that is kind of interesting to see her daily so she gets to see how I'm doing with the chemo rather than hear about it.

They unhooked me at 10 on Tuesday night and said I could stay or go. I left and drove home as fast as I could.

Almost done...then I can get on with things, no real getting back to things...

Finally scheduled for next admit

Had problems pinning them down for my next admit...Finally got them to get me in this Saturday 7/03.

Yesterday, the stars aligned and I was able to go out and play with the team. It was nice to see everybody there and I got some encouragement which I appreciate. They're off to a tourney this weekend. Good Luck Lorax!

Infection

What started out as what I thought was a blemish, allergic reaction to new deodorant, boil, or clogged pore, in my axilla grew and grew to such a point it was painful to move my arm without pain killers and I had such a large lump it was really alarming to me, considering... I had an appointment in the SCCA and after I got my CT done I bullied my way into an earlier appointment with my doctors so I could get some relief and find out if my trip was a waste since I was due for my next admit.

I finally got to see my doctors and they took a look at the thing then the CT and came back and suggested that it was some kind of infection and would be giving me drugs for it. I was hoping for something more dramatic, like lancing, but they just gave me the drugs and sent me on my way. Had to cancel my chemo admit and reschedule.

While in Seattle with my pal we tried to find the number one best hamburger joint in Seattle, but either my memory failed me or the place had moved. We ended up just getting burgers at Fat Burger in Issaquah on the way out...not the best burgers in Seattle, but not too bad after driving all over trying to locate the other one.... Next time I guess.

Transfusion...keep fighting

Last thing I EVER wanted to do. Every fiber in my body does not want to, but after repeatedly fighting every nurse and doctor about it, I just gave up... Or, as one nurse put it, gave in...

Why:

1. Buddy of mine at work had over 10L through his body and he's ok.

2. Girlfriend's birthday is the next day, no way am I messing it up with my medical issues.

3. Was supposed to be just platelets, so that started the slippery slope.

4. For lack of a better word, I'm desperate to be done with this whole ordeal and if it prevents any delay...

5. Needed to be better in order to see my mother.

Blood counts are low...let's fight.

Typical scenario, as in, it what is expected post chemo; my blood counts were pretty low today. As in low enough that the nurses are asking me to get a platelet transfusion. This is about the last thing I EVER want to do and I fought them to let me see if they come up overnight. It's been my experience that when they drop so low and everyone is freaking out, is about the time that they start getting better.

I hadn't any side effects to indicate any problems; no nose bleeds, no bruising, no blood in the toilet, etc etc etc. Sure tired a bit, but I've been working.

Chemo Round 6 (06/01/2010 - 06/06/2010)

I went up early again and tried to have some fun with my friends, then went to the hospital and "checked-in."

Last round that I'll ever have to receive Adria again...maybe. Technically I've reached the conservative maximum lifetime dosage a person can have, but if they wanted to push it I could have a few more; That probably won't happen though.

Anyway, this round was much the same. As soon as they hooked me up to the drugs I didn't feel like doing much of anything. I think that's partly the fact of how boring I find the hospital and, of course, the drugs. Lost my appetite quickly but did manager to save some left-over calzone from a local pizza shop so that was a treat.

I had hoped to watch some world cup, but somehow I got the dates wrong so completely missed that, as in they weren't even playing yet.

Another uneventful round and will be back...

Round 5 Chemo down (Week 5/11 - 5/16)

Got through round 5... Started uneventfully enough with plenty of hair for one of my nurses to complain about and the rest of the time kind of just surviving the whole thing. I went up with my nephew and he dropped me off at a friends place where we sat and caught up and talked about the usual. Next day I went to my pre-chemo check-up/blood work/port access. following that I went directly to be admitted to University of Washington Medical Center. Same floor, same nurses, different room...It all went about the same, but I'm pretty sure my appetite is disappearing faster than usual, partly the expectation of the food, and certainly the drugs.

Next day, Wednesday, I think I ate. The last week went in a rush, so did my packing, and I forgot my phone charger. Sent an email of my contact information to friends and family and tried to make the most of the time. Found the longest hallway at UWMC, and tried to make a habit of walking it...see you in the K wing...
Thursday, same, last day of Adria. Think my appetite will return after that since it's a harsh one.
Friday, Appetite doesn't return. I bet I can fast through the rest of this... After Adria is removed I lay and rest, notice a "drip," think it's sweat; Notice a puddle, it's blood and IV fluids. Most action I've had all week, nurse comes in, fixes IV and makes some calls for possible skin exposure to chemo, I get new PJ's and bedding.
Saturday, Last day of Ifos; almost done; I agree to have a shake of Ensure and who knows what which sits with me for a while, but later that night it doesn't. Friend arrives who will take me back tomorrow. Have developed a headache and ask for tylenol, barely get it down and it's back up, headache is raging. Just want to get through the night, is there something you can give me; reluctantly get morphine, sleep for 4 hours, woken with headache again, more morphine and I make it to morning. Docs and nurses all come round. I make it to discharge.

Sunday, I'm discharged and after a long time with prescriptions I finally get my Neulasta and am on my way. Sleep most of the drive back, Thank you April for coming to get me!

Even make it to work today. We'll see what tomorrow brings!

Careful what I wish for

In an attempt to work around all my engagements coming up I spoke with my chemo docs to see if the rounds of chemo can be worked around them. Answer is yes, and now my next admit is 5/11.

More fun! I will actually be glad to not shave again, and the nurses aren't all bad.

Adria and Ifos for 2 rounds and the chemo therapist was hinting around to 2 additional round of straight Ifos... Don't know what that's about, but will clear that up along the way...

As expected...

Portions of this post are from a note I scribbled down a bit after I got my check-up appointment (02/11/10).

"I'm not afraid of it coming back, I'm afraid of what I have planned if it does..." And by afraid I don't mean fearful, I mean I'm not excited about it. This does not mean suicide...ever.

1st. Everything I own is on sale, seriously, give me something elusive and temporary and whatever you want is yours. I've started this already...
2nd. Two more rounds of Chemo; not just chemo, but the strongest dose of Adria possible, like before, and plenty of Ifos. Two rounds because that will lead to the maximum lifetime dose of Adria I can have...
3rd. ...
4th. ...

Here's a bit on why Plan R(ecurrence) comes into play. First, I'm not sure if it's better to tell any of you before I attain confirmation, so I'm not going to. I'm convinced it was more costly telling some people in the first place. I don't want to cause you more stress, but I know some of you will resent that I held back. Please understand I'm doing it to save you anxiety and any other trauma this might cause.

In cruel irony, what seems like a week after I was given my next check up date, I began to notice swelling and a slightly firm(actually this is hardened tissue from radiation) mass in an area close to the scarred area. As I sit writing this I can feel mild discomfort and when I palpate the area and compare it to the opposed region of my body, there is a marked difference. I am worried about this, I'm pretty sure the bitch is back, and I'm really not sure if I should try to get an appointment sooner for a check up or just wait until my scheduled date. I'm not anxious to go through any more treatments etc etc, but I will and I'll keep fighting, but after that fight comes plan R and admittedly, that's not the best plan either. Should probably buy more lotto tickets...

I'm now left wondering, what didn't I do? Did I screw up by eating too much fast food, did I screw up by eating some of the things I used to eat(cell food, multivitamins, muscle milk) before all this, was I not aggressive enough in my fitness, did part of the cure(radiation)(No, I've had confirmation that it wouldn't) cause this, have I eaten too much chocolate, candy or Pepsi, did I not hold onto a bright enough attitude, did I latch onto a "I'm as good as dead" approach too much? What more can I change?

Work week following surgery

Start my days with tylenol and a careful shower avoiding getting the surgery site wet, then get to wear pajama pants to work because they are the most loose thing I own. keep stretching off and on at work, and be sure to hobble around a bit. Over the week my gate has gotten a bit back to normal, but I do feel this tightness in the area, but I can't determine if it's nerve damage, or actual tightness. As of today I'm actually walking pretty normal but there is still some pain and what seems to be weakness. Otherwise this is the best day of walking I've had post surgery. Progress :/

More appointments to come up at the SCCA. I'm researching options to get an experimental drug called Yondelis...

Read This

http://www.msnbc.msn.com/id/36182363/ns/health-cancer/from/ET

Courtesy of Amber, Thanks you!!! ;)

Get back to normality

I try to stand and walk all day in order to keep blood flowing and hopefully not develop too much tightness at the surgery site. I do some chores, mild stretching, walking around most of the day. Have a couple visitors but otherwise just mill about with chores. I can't afford not to work, so I prep for that.

Freedom

I get the go ahead to be released today. The surgeon comes to see me, says he got what he thinks are clean margins, but it was around the vein and some nerves, so very difficult to cut away. We talked a bit about next steps but he just wants me to wait and talk with the whole team...

They look at the bandaged area, but it's this thick foam bandage so can't see anything. The residents came back late to take out the drain. It's an extremely weird feeling as they pull out the drain form this hole they put in me, above the incision. It's out and they bandage me up fresh. The incision looks great, they say. Probably the most painful part was when they pulled off that foam tape...I swear it sticks to everything, VERY well; I'm still sore in places from that tape. Later the nurse takes out my IV and I'm free to go. My ride arrives and we head back home. The drive back is uneventful, but we stop a few times so I can walk it out, and we keep heading east. Stop in Yakima for a Miner's burger and get home about an hour later. I keep resting.

Another day in hospital

They decide they want to keep me until I'm draining less the 30 ml of fluid into the drainage resevior, and I look and don't think I am anyway so am pushing to get out as soon as possible. That doesn't look like it'll happen today. I mostly hang out, do a couple laps trying to walk, take my pills, take my tylenol, and am frustrated because they want me another day, but also because I was hoping for an outpatient procedure... The day is uneventful and mostly just filled with walking and resting.

A Physical Therapist is sent in, but as they were told by the nurses, I'd been walking so didn't think I needed it. I ate leftover pizza and drink lots of water and keep resting.

Surgery Day

I drove up last night and stayed at the new SCCA House, a facility for patients of the SCCA, relatively inexpensive, very nice, and extremely sterile. It's set up so that people can have long-term rentals there, so the room was HUGE! Good parking too!

I went to bed late, after a shower with hibicleanse, then got up early and showered gain with hibicleanse. Then drove to the UW medical center and checked into my appointment. My surgery was only the second on the day, so it was early, but also mostly on time...perhaps.

I think it was about an hour lately really, but concidering some of my previous wait times that was decent. They called me back, had me change into a gown, the "bear hugger", and begin putting in IV's, asking questions, confirming ID, etc etc. Kind of nice getting all that attention. I told the anesthesiologist that I thought I was over sedated last time and that it was at UW, so they could make a better dosage. Then the surgeons' resident came in and asked more questions and confirmed the site of the surgery and signed the location. The surgery before mine was running a bit late, so I got to wait there a bit...

The anesthesiologist wheeled me into the surgery room where a nurse and more residents were prepping the room, where they had my CT/PET/MRI images up on screen. I transffered from the gurney to the OR table and just laid there while they continued to prep and wait for the surgeon. The anesthesiologist gave me a dose of "2 beers in one shot," as she called it, and I made jokes as if I was at a bar. Then I kind of dosed, but woke up a bit and they still hadn't started, but they got news that it would be starting soon and that the surgeon was on his way. I know I got another shot of the "2 beers" and I think I got a mask of oxygen, but after that I was out...

Couple hours later, they wake me, I'm in recovery and I make a couple drugged up calls. Fun for everyone, right?!?!?! Then I remember them wheeling me out....then I remember waking up in my old room on the 6th floor. I am given a PCA of morphine, but after 2 shots of that I quit because I'm convinced it's giving me a headache; I ask for tylenol. The nurse wants me to breathe deep and I tell them I want to walk. There is a lot of commotion as they urge me to get up and walk, and they really wanted me to move to a chair in the room. The wound has a drainage, so that's attached and I have to clip it to my gown and try not to pull it out. With some effort I stand up, make some movements to a chair, then sit down. I'm sitting there, drinking water, and for the first time after anesthesia get sick and vomit. I feel better and decide I want to change.

I make my way, hobbling, to the linen closet and get a new gown on. I then hobble back to the room and just relax. I got up and walked around a couple times, but most of the day was spent in bed. Many of the nurses seem to remember me(good/bad sign), and are pleasant. I make a trip to the 'kitchen' for goodies, then order pizza delivered really late. It's really good and I got to sleep full.

Scheduled for surgery 4

April 15...

Last check ups in a nut shell...more cuts!!!

02/23/2010 - Chest CT/MRI. Early...Chest CT is cake, almost fall asleep in the MRI...
Wait while they look the scans over, get to chat with them, mention some swelling I noticed after I was given the check up schedule... Get felt up a lot, then told to schedule a PET...

03/05/2010 - PET...Early. way too early for a Foley catheter, not to suggest that there is ever a good time, sheesh. Later they inject me with a radioactive sugar and let that disperse throughout my body, walk me to the PET machine, lay there for around an hour as that scan runs... get the catheter out; go try to make the most of a nice weekend in Seattle!

03/09/10 - time to get results, if you can even call it that... Something there, glows pretty bright on the PET, but not as bright as they'd expect... Begin, again, the process of pre-op quesitons and scheduling. The only thing definative at this time is that I'm going in for surgery, on some Thursday in the future, and getting the thing removed and biopsied.

See buddy Allan, see IMAX 3D of 'Alice in Wonderland,' go to Red Mill after being thwarted on our attempt for grass fed burgers, then safely navigate rush hour traffic and contemplate next steps as I drive back home. Powerball ticket bought...

More about the Insurance thing...

Apparently some kind of resolution is coming about on the contracts between my insurer and UW et al. Good, I guess, but the whole thing leaves me disappointed...

Tripping to Seattle

Next check up is in Seattle 2/23/10. Kind of looking forward to it, kind of not. It's going to be good to get up to Seattle, see a friend or two, seafood(fresh), hang out at the clinic, you know, good times!!

I don't REALLY mind it, everyone there has been super and I can't say enough good about them, so they are just great. Th only thing that really bugs me about it is losing time to get up there.

I am looking forward to maybe wowing them a bit with how active I've been...Admittedly not as active as I'd like, but I'm playing Ulty again(pretty regularly), almost doing Yoga regularly, Soccer regularly, running (still not regularly), some weight work irregularly. So, Physically I feel pretty decent, but I do notice my respiration is not quite up to par; I'm convinced that's because I'm not running as regularly as before.

The Insurance forecast

doesn't really get any better, but currently I get some sort of reprieve since my insurer is still working with the UW, or the other way around. So I'm in some kind of gray area until the end of the month, which isn't so far anyhow...