Update on #Cancer: Battle Nears An End

(Again, if you spot typos let me know.)

Sooo...this is where we stood at the time of the previous cancer update: I went back on the Avastin (the chemo that was stopped due to the swelling in my feet and legs as well as the protein in my urine). I had two treatments, on 9/7 and 9/14. At the time I decided, after doing some reading, to take a magnesium supplement to try to limit swelling. Don't think it had any affect other than making me pee even more than I was.

Today I saw my chemo oncologist. The swelling has returned. The tests on my urine show the protein leaking into my urine again. So we're stopping the Avastin.
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Meanwhile, I am having increasing difficulties with walking and using my lest hand for...well, anything...I've had a few falls. which were mostly embarrassing. But in the last two days I fell outside, in basically the same spot: near my mailbox. Yesterday I got lucky because I didn't have my phone on hand, but a couple of neighbors eventually came outside and helped me up. But my side is kinda sore and really, really bruised. Today's fall left me bleeding from my knee and elbow, and happened even while using my walker (clearly I haven't mastered the use of this device). My sister-in-law had arrived to take me to the doctor. One of the same neighbors who aided me yesterday happened to come outside again. I called my brother who works close by. He was here quickly. And then the mail carrier arrived as well and helped. "This isn't in your job description," I told him.

In talking with the doctor after the decision to discontinue the Avastin, the only option he could offer to continue trying to treat the tumor was a chemo in pill form, which was actually a standard method of treatment for glioblastoma before they started using Temodar and Avastin (both of which were unsuccessful in my case).

The doctor left me and my sister-in-law alone to talk. We both broke into tears (I'd like to point out that this was the first time in this whole thing that I cried. And that it's happened a couple more times since.)

So I made the decsion to end all further treatment on the tumor. The doctor said there's no way to give me a specific prognosis as to how much time I have. Just basing it on averages of other glioblastoma cases he offered a guess of six months.

Plans were previously made for me to move in with my brother Steve and his family. They have an extra room in their house that is almost like an apartment so I feel I'll be comfortable. They are getting things set up and the hope is the move will take place this weekend. I don't have to move much immediately -- mainly clothing and some things I may need immediately.  The rest of the contents of the house I can take some time sorting (what to keep/donate/trash) as my cousin, who is buying my house as is and will renovate it and eventually move in, is giving me as much time as need.

 I am also slated to speak to someone from hospice care, although at this point I'm functioning well enough (hard to beieve but it's true) that I won't need, say, nurse's visits on a regular basis. I think we'll be talking about equipment I can get (such as a wheelchair?)

(BTW the Duke University clinical trial was a no-go.)

I know this is bad news and a lot to process. But the good news is I still have my right hand for  one-handed typing (minds out of the gutter) and my mind stilll works. So I intend to blog, tweet and complain about your behavior on Facebook for as long as I can.

Neverending Story -- new #cancerisabitch update

(Forgive any typos and the like if you spot them, and let me know so I can edit. I've already edited but I probably missed something.)

It's starting to feel a bit like piling on.

As previously mentioned here, my chemo oncologist stopped my Avastin treatments and referred me to a nephrologist to check on my kidneys because of protein in my urine. I also had a followup with my radiation oncologist the next day (April 26). I updated both on things like the leg swelling and weakness, general tiredness, the return of the focal seizures in my face, and some reoccurring problems grasping things with my left thumb and index finger and speech (stumbling on words, etc.), all which indicated that the glioblastoma was possibly reasserting itself. The two oncologists arranged to have me get an immediate outpatient MRI that very day. Sure enough, the tumor is starting to grow again.

I saw the radiation doc on the 27th. She said that having had two surgeries already, and especially with it not being extremely large yet, another surgery is not really an option now. She (consulting with the chemo doc) recommended another round of radiation, but only for two weeks (Mon. thru Fri.), and in a more limited area of the brain, followed by a different chemo treatment. To alleviate the issues I mentioned above, I was placed back on the steroid decadron. They (and, I assume, the lack of Avastin) have had positive effects. My legs, although there's still swelling, are stronger again, and my fingers and speech (and typing) are improving. And the extended-release version of Keppra the seizure specialist put me on (see last post) has completely stopped the facial twitching. For now, at least.

Today I saw the chemo doc, followed by, finally, because I had the wrong number for the office for a couple days (rolling eyes), the nephrologist.

Chemo doctor said that after I have the radiation (to be scheduled -- phone call tomorrow), I will start on irinotecan via IV. Because of side effects (possible nausea, diarrhea -- OH JOY! -- and lower white blood cell counts) he wants to lessen the amount of each dose and spread them out over a period of time a little. Maybe one dose one week and two doses a couple of weeks later, or something like that. To be determined.

He also said he tried following up with the doctor at Penn to find out if I quality for the immunotherapy vaccine clinical trial, and they haven't gotten back to him. He feels this is a sign that either I didn't qualify based on the genetic testing or they didn't have room, or something, because otherwise they would have likely contacted me quickly to get me into the program. (They also never got back to me after my recent followup. Another phone call tomorrow.)

As for the nephrologist, he really believes that the biggest factor in the protein in the urine is not from a kidney problem but basically some combination of the Avastin, my diet (way too much sodium) and the recent doubling in the dose of my blood pressure medication amlodipine. This is also an issue in my swollen legs. He thinks I have an extra 30 pounds of weight just from that. He has given me a prescription for another blood pressure med (one he takes himself, he said), and told my to cut my amlodipine back to where it was. He wants me to restrict my sodium intake, cut out red meats (NO MORE BURGERS??? NEVAH!!!! but I will cut back a lot), eat more chicken and fish, egg whites, etc.

One week after I'm on the new med he wants me to have blood work done (the fasting kind) and he also wants me to have an ultrasound on the kidneys. I follow up with him in August. If there are still problems at that point, he'll want to do a kidney biopsy, which would be a needle into my body to remove kidney tissue.

Okay, I think that covers the facts and figures, so to speak.

This feels like it's getting more and more complicated. So much to do, so much to keep track of, and I'm beginning to worry about whether I'll actually get to do some of the fun things I was hoping to do during the summer, like a few days at the shore, some Broadway shows in NYC, maybe a Phillies road trip. Sure, going to the downtown parks and festivals and the like are great, but I need more. What I really need are friends to do some of these things with. The people who I know would go places with me all live too far away. The people who live here are just acquaintances, or just Facebook "friends." And my family is great, but it's not the same dynamic. So if any of y'all can help me out here that'd be awesome.

Also, I swear I'm gonna get those Birthday Month Disco posts done.

And also again, READ AND SHARE MY RECENT POLITICAL POST, DAMMIT!

New #cancerisabitch Update: Featuring Pee!

So I found out today that I'm off (at least temporarily) the Avastin treatments.

A couple weeks ago the urine sample I gave them on my regular visit showed some protein in it, although not at a high level. My oncologist was concerned enough to have me do a 24-hour urine collection, which I completed a week ago (at home -- because there was no way I was carrying a jug of pee around with me to work, so I waited until my last work day until this coming fall, which was April 15th). This time the testing showed it had a even higher protein level. So he wants me to see a nephrologist to see if there's a problem with my kidneys. The protein could just be a side effect of the Avastin, though.

I'm still waiting to see if I quality for the immunotherapy vaccine clinical trial through Penn. They had said the genetic testing would take a couple months, and it's been that long since I saw that doctor, so I called the office to follow up, and I'm waiting to hear back from them.

Also, I mentioned a while back that my focal seizures had returned and were occurring periodically. I saw a seizure specialist, who thought I might benefit from switch from the regular formula of keppra (anti-seizure med) to the extended-release version. I've been on that for 3 weeks. At first it didn't seem to help -- in fact, at one point it happened three consecutive nights -- but I haven't had one in the last week-plus. So I'm keeping my fingers crossed.

I'm to schedule my next MRI in May.

Update: The Avastin Is... #cancerisabitch

So I had my followup MRI two weeks ago. I called the next day to get an appointment with my neurosurgeon...

"The first available appointment is on March 1st with Dr. Liebman."
"I don't know that person."
"Well, Dr. Barrese is no longer with his practice."

:o

The first time I saw Barrese he commented that he had joined so recently that he didn't even have new business cards yet. And just like that, the guy who performed my second surgery is apparently gone.

Fortunately, it appears I won't be needing a third surgery just yet. Today at the oncologist's office the nurse practicioner (I saw her instead of the doctor for some reason) said that the newest MRI looks good. There's no real difference from the previous one and no evidence of a new tumor yet. I won't need to add a second drug to the Avastin treatments at this time. For now, life goes on as scheduled.

P.S. To finish the title of this post: ...working. :)

A Brief #cancerisabitch Update

So I'm still doing the Avastin treatments every two weeks as I mentioned in my last post and have to schedule an outpatient MRI for this month to see if it's helping stop the cancer from growing. But in addition, my chemo oncologist at Aria put me in touch with a doctor at the Abramson Cancer Center at Penn Medicine.

There's a clinical trial of a vaccine that would basically bolster the immune system to fight the cancer cells in my brain. The Penn doctor said she feel it's very likely that this will be approved by the FDA based on the results so far. In order for me to be part of the trial they obtained my pathology from my surgeries -- particularly the slides containing bits of the removed tumors, which they have to test for the presence of a genetic marker targeted by the vaccine. It will take up to two months to get the results.

On a more disconcerting note, the facial twitching that set off this whole odyssey? On Saturday evening, after months of facial peace, the spasms returned. Unlike every prior incident, this time the left side of my face spasmed on and off for about 90 minutes. It would settle down briefly and start back up again, over and over. I went to the emergency room and they did a CT scan of my brain, which showed nothing worse than what it did before.

A possible cause: that day I slept in late and didn't take my first daily dose of meds until about 3 pm. This included Keppra, the anti-seizure med they put me on in April for these "focal seizures." But I'm skeptical because I've been on these for months. I wouldn't think a half-day delay would have had such a drastic effect. It had me worried.

After too much waiting for the test results on a bed/gurney that was ridiculously uncomfortable to lie on, I was ready to leave. The doctor said that although the CT scan didn't show a possible cause, I could stay overnight for observation if I wanted. I declined. Nearly five hours in the ER was enough. There hasn't been any twitching since. If it does happen again, then I'll really worry.

Flattered Or Frightened?

I received this response to my profile on a personals site (not OKStupid for a change)...as for the question in the title above, I am surely more the latter.

Hello hun i must admit you really look good sexy and charming and you caught my attention (smiles).My name is ----- am from Pennsylvania - Philadelphia - South am a construction engineer and am presently working on a construction project here in Michigan,but would be done and back home Philly real soon.Baby am 33 single and been gay all my life lol.Hun am tired of being single i need a sweet real man in my life who i would make happy and in return also make me happy,satisfying both our sexual needs and we can have so much fun together.Baby am not looking for gifts or money i have all that already all i want is true love care affection and intimacy,baby will you be that man to make me happy and i be yours too.
I love to chat but because i do get busy mosetimes i only do it on yahoo chat so here is my messanger id baby
(-------------@yahoo.com),whats your yahoo chat id?baby lets get to chat soonest ok,also here is my phone number you can text me (---) ------- ,i can only text at the construction site phone calls not allowed.So baby whats your number so i can text you as well.Hun i hope to read from you back soonest till then kiss kiss stay sweet.-----.
(---) -------
Yahoo chat id....(-----------@yahoo.com)

Five Years Of This?

Yes, as of yesterday this blog is now five years old. And what better way to mark the occasion than by thanking Wikipedia for explaining the content of a modern-day classic?

All these years and I never figured that out!

But seriously, I'll try to post some other stuff. I was thinking of a "best and worst movies of the last five years" post, but I've seen so few 2014 films...

Sleepy New Year

It's about 1 a.m. as I begin writing this, and I'm actually thinking of going to bed soon. I guess the rum I added to the diet Pepsi tonight is making me a little sleepy even though I was not up early this morning by any means. Anyway, it's 2013. Let's hope things are much better than they were in 2012. So much needs improvement: the economy is still a mess, the political system is failing to fix it (because the Republican party somehow finds itself enslaved by the Tea Party extremists -- doesn't any of them realize that these nuts are destroying their party's hopes of winning the White House for the next 20-30 years?), the Eagles turned out to be a disaster and the Phillies are on the verge of a similar fate (unless their old, now injury-prone stars discover the fountain of youth), the NHL doesn't even exist right now -- and that's not to mention the usual hurricanes, earthquakes, crime, war, etc. I could go on but like I said, I'm sleepy. Happy New Year. Please?

Almost McRisen

Because I'm somewhat amazed sometimes by how quickly a building can be completed, I was taking pictures of this McDonald's site near my workplace. First was January, shortly after they tore down the old one...

...then early March...

,,,and here's the pic I took on May 4th, my next-to-last day of work:

As you can see, although it wasn't taken from the same spot (I was across the street instead of right on the corner), it's close to completion. I don't know if they've had the grand re-opening yet and, unless I see some mention of it, I won't really know until I go back to work in (hopefully) September (assuming I don't get a job somewhere else first).

Killer* Bee In My Bed

I hereby declare that I am officially the only person to have ever been stung by a bee.

On the right pinky finger.

At 5 in the morning.

While lying in bed.

This was the result, perhaps, of opening my window the night before because it had gotten so warm that my bedroom was stuffy. I can only assume that at some point the little thing found a crack in the screen or something. But there I was early Saturday, having only gone to bed an hour or so earlier, waking up with a weird feeling along my side. I moved my hand to pick up whatever it was and suddenly felt a stab on my finger. I thought I cut myself on some sort of metal object (although what it could have been and how it got into my bed, who knows). I freaked out, did a combined swatting/throwing motion, jumped up, turned on the light and looked on the floor in the direction I swatted/threw, only to see nothing.

I looked at my finger. It was a bit red but I saw no cut. It sort of hurt, but it was a very odd feeling, like it was about to swell or go numb. I started to panic. I thought maybe some sort of exotic bedbug bit me and infected me with some sort of rare disease that was going to kill me. But nothing else happened in the next minute or so. I went into my bathroom and ran the finger under water. As if that would help. It wasn't even that cold. But I wasn't going downstairs to get ice.

Finally I started to settle down and got back into bed. As I lay there I started imaging more things on me. On my leg, my arms, my back...then I realized something actually was under me. I freaked out again, jumping up and turning on the light, and then finally seeing the cause of all my troubles. The bee was pretty mangled, between my swatting at it and then lying down on it, but still sort of alive. I grabbed a paper towel, picked it up and crushed it, and tossed it away.

Seriously. This is my life.

*Disclaimer: bee may not have actually been a killer, seeing as how I'm not dead.

How Would You Respond?

I'm just going to throw this out there and ask for your thoughts. This is a "conversation" I'm having with a guy on OKCupid whose profile says he's straight but decided to send me a message. His messages are in bold, with my replies following...

Feb 17, 2012 – 1:21pm
Hi,
How are you?

Feb 17, 2012 – 7:29pm
I'm fine...and a bit confused...

Feb 20, 2012 – 2:11pm
Why?

Feb 20, 2012 – 3:40pm
Well, because your profile says you're looking for girls who like guys, and the last time I checked, I wasn't a girl. ;-)

Feb 21, 2012 – 10:55am
Hahaha :0...Well I am not open about it here and hence the reason....

Feb 21, 2012 – 8:16pm
Okay...well, I kinda need to know what I'm getting into here, especially since another straight guy on this site sent me a message recently and we went back and forth a bit before he flaked out, so I don't want to waste time again unless you're serious. So are you saying you're gay or bi but closeted or is it more like you're mostly straight but you like a guy to give you a blowjob now and then? ;-)

If we're going to meet in person, it'll have to be in a public place and it needs to be accessible to public transit since I don't drive. It would also help if you have a picture; since mine is on my profile it only seems fair.

McRising From The Ground

Remember this picture from January?

Here's a picture I took this week...

I wonder how quickly they'll be open, and if I'll still be working nearby when they do? Or will I have to wait until I return in the fall in order to see it? (If I'm not employed elsewhere, or hit the lottery, that is?)

MixBlog 2-26-11: Such A Mess

Let's see...where to begin...

Two of the last three nights I've fallen asleep in front of my TV for at least two hours, thus affecting my sleep patterns. Happened Thursday night, and somehow when I went to bed and slept, I didn't set the alarm properly and didn't even wake up until 8:30 am, which is when I have to arrive at work. Last night, and I ended up staying up really late and then stayed in bed until a little after 5.

5 pm.

I have to be up for work tomorrow morning, so I've got the choice of trying to drug myself to sleep (with cold medicine or Tylenol PM) or stay up between now and at least 6 pm tomorrow (when I get home from work). As I have no leave time to use, skipping work is not an option (and as I already was late for work Friday I don't want to do that again).

Then there's the credit card I've been using regularly.

Paczki And Other Pics 'N Stuff

Once again I find I'm falling behind in blogging. I know I need the money and all but I can't wait until I'm put in nonpay status sometime this spring. Then I'll have the time to devote to this, not to mention searching for another job so I don't have to go back to this one in the fall -- ideally it would be a part-time job of some kind, whether it's two or three 8-hour days per week or 4 hours a day/five days per week. Anyway, pictures...

On Monday I was downtown and, since I was nearby, got a pic of Independence Hall without all that nasty scaffolding. Two days earlier there was a ceremony and the bell in the tower was rung for the first time since the renovations.

This evening, I stopped at my nearby supermarket and saw this...

...I'm guessing a truck ran into it to cause that much damage. As soon as I got in the door, I saw a table full of...

Having seen a few mentions of this on Twitter today, I read the message on the side of the box. I don't think you can see what this says, but basically it's a Polish tradition to bake these right before the start of Lent. Seeing as how I can hardly resist sweets and snacks these days, I bought some. They're quite tasty.

But going back to the subject of my blogging, I saw a couple of movies over the three-day weekend! One was kind of a slog and the other was a mess. I will write about them this week. And I still have that one long post, which is now a full year in the making. Sheesh.

Why I'm A Jerk

Remember this?

I know you've been waiting desperately for the answer to why I'm wearing this t-shirt.

Well, one person has, at least.

It's not because I'm an actual jerk, this tweet notwithstanding.

It's because of this TV show I started watching last year. I like it so much I bought the t-shirt. (To be honest, it was on sale for 50 percent off at the time, which helped spur my decision.)

You're welcome.

MixBlog 10-27-11

I need to put some content up here so the twelve or so of you who are actually reading this stuff (as compared to all the hits I get from people doing Google searches for pictures of shirtless guys*) continue to stop by, so here are some little observations...

Baseball: Right now I'm watching Game 6 of the World Series. It's kind of bizarre. It's 4-4 in the 6th as I write this and both the Texas Rangers and St. Louis Cardinals seem to be trying to give the game away with various displays of ineptitude. If they're this mistake-prone in Game 6, what happens if the Cards tie the series and they have to play the dreaded all-or-nothing Game 7? Update: 7-4 Texas in the 7th. Will this game end before I finish this post?

Hockey: Speaking of mistake-prone, I had the Flyers game on earlier. They were playing the Atlanta Thrashers Winnipeg Jets 2.0, who came into the game with a 2-5-1 record, at the Whatever-The-Bank's-Called-This-Week Center. Last night the Flyers lost at Montreal by a 5-1 score. The Canadiens were 1-5-2 before beating the Flyers and hadn't won a home game. So you had to figure the Flyers would be kind of desperate to put together a solid effort.

They fell behind 5-1 in the second period. I tweeted about it at the time and used these hashtags: #karma #apologizesimmonds (referring to this). After the teams traded goals, the Flyers then scored two more in the second and three in the first three minutes of the third period to take a 7-6 lead. I was worried that my tweet was serving as a reverse jinx.

Working At Working

Just want to vent a little.

One week and one day into my new job, and I kind of miss being out of work. While I admit I wasted plenty of time during the day, now it seems like I have little time. Working a full day, with a commute of 1 1/4 hours each way -- which is actually a little worse than the commute I used to have -- is wearing on me. Between checking the websites I regularly visit, plus Facebook and Twitter, and this little blog, plus those TV shows I watch regularly*, and keeping up with reading Entertainment Weekly and some other stuff, it feels like I have no time to just relax.

So I'm staying up as late as I can to try and squeeze it all in, which means I tend to get less sleep than I'd like. And I haven't been to a movie in this span. I was hoping to try and see something this past weekend but slept in both days. If I go to a movie it'll have to be at night or on the weekends. I thought that I'd be able to handle this particular schedule. It's a seasonal job, generally running from September through March each year. It can be extended a little bit, but essentially I'd have the whole summer off. But I'm already feeling worn down a little.

I'm wondering if I might be better off with a year-round part-time job, maybe three days per week. The problem is, even if I start applying for such jobs, I can't take any days off to go to a job interview. So I'm sort of stuck. I'm not at the point where I'd just quit this job. Obviously, I can't afford it financially. But I need to find a way to make some more time.

*There are also one or two new shows I've considered watching, but haven't started to yet. Now multiple episodes have aired and I'm behind in them, and there's just no way I can catch up now, even if the episodes are still available through On Demand.

Meh

My mental state right now is a little...how to describe it...lazy? Hazy? Uninspired? Meh? Meh is as good a word as any. Here's the first time I ever recall hearing it, and I've loved it ever since...



Anyway, the last couple of days when I've sat down at the computer I haven't been able to discipline myself to write something here. I look at websites, run through my Twitter and Facebook stuff, play a chess game that came with my computer, and so on. I'm in a bit of a rut. I feel like, as I tweeted last night, I need a new life, or at least some lucky breaks in this one. I'm not confident of any of this happening, though.

So, meh. But here are a few brief comments on things that, if I break out of this malaise, I might write about in more detail: I'm happy with the Phillies so far (I'm going to the game later tonight against the Mets), not so happy about the Flyers, and made the correct guess about which previously-eliminated queen was returning to "RuPaul's Drag Race."

And hey, since Bradley Cooper did such a good job in "Limitless," and pretty pictures are always nice...

If you have comments or questions or ideas or anything that might inspire me, feel free.