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.

Brief Update on #Cancer Front

When I saw my chemo oncologist on the 26th, he presented me with another treatment option: going back on the Avastin via IV. This was the one that was stopped due to the swelling in my feet and legs as well as the protein in my urine. Since all the subsequent tests on the kidneys turned out fine, and the Avastin seemed to have the most success in slowing the progression of the cancer cells, the doctor felt it was worth a try. So I had my first biweekly IV Wednesday. If the swelling returns and I'm taken off the Avastin again, well, I honestly don't know what happens then.

I contacted Duke University about their clinical trials, and because I have multiple tumors now, even though the cell groupings are close to each other, I don't qualify for the much-hyped polio virus-turned-cancer cell killer, or any of the other trials, save one. For that one my tumor has to be something called EGFR (Epidermal growth factor receptor) amplified 5 fold. My oncologist is going to check the pathology from my previous surgeries tested to find out my number, though he said the number can change over time. The only way to know the current number is to test a new sample, which would require another surgery, which, as I explained previously, isn't really an option after having two already. So I think this is a long shot at best. If I did somehow get qualified, I'd have to go down to Duke every 2 weeks.

Not good news on the cancer front

Again, if you see weird typos and such, let me know so I can fix them.

So in my last update I talked about the aftermath of the MRI I had at the end of April. During May I went through a brief round of radiation. I had 10 total treatments that only lasted maybe 10 to 15 minutes each After that I started the next chemo treatment, this medicine being called irinotecan. This was administered via IV (and it took about THREE hours each time) in a regimen spread out over a few weeks. It was done on Wednesdays. First they did it on back-to-back Wednesdays, then they'd skip a week, then they would repeat the process. The day after each second Wed. treatment I got an injection of a medication designed to keep my white blood cell count high.

Luckily, unlike the previous chemo, this one did not cause my legs or feet to swell. In fact, the previous swelling went away thanks to getting off the Avastin as well as changing my diet to reduce my salt intake. However, in the last 2 or 3 weeks or so my diet has very much gone to pot. I've been eating more junk food and red meat so my weight has come up a little bit; also, I think my feet are swelling a little bit so I really have to get control of what I'm eating again. I'm due to see the nephrologist in about 2 weeks. There shouldn't be any issue with my kidneys, though.

Which brings us to my latest MRI on Wednesday. I saw my chemo oncologist Friday. He had the results and they were not good. The area which showed the cancer cells in the last MRI still shows cancer cells. And he said there are more cells growing in kind of a ring pattern around that area.

He spoke to my radiation oncologist, who said they really couldn't do any more radiation because of the two previous rounds of radiation; there's only so much radiation that they can do to the brain, and it doesn't seem to be helping anyway even if they could do more. They also said they feel surgery isn't really an option since I've already had two in that area, though I have the option to a talk to a neurosurgeon about it.

My chemo oncologist said he reached out to Penn Medicine to the doctor I saw previously to see if I qualified for the clinical trial.(By the way, I did not qualify for that particular trial based on my genetic testing.) So he sent her an email to see if there were any other trials going on; he has not heard back from her yet.

He also suggested I should contact Duke University because they have a lot of activity as far as trials for treatments of glioblastoma. CBS News did a report on one a while back that showed great promise. I shared it on Facebook at the time. I don't know if I can get into the trial or any of the logistics as far as how many times/how often would I have to go down there and for how long.

In the meantime my chemo oncologist said there are two more chemo drugs I can try, but they don't have much of a track record for treating glioblastoma. One that seems to be slightly more promising would be in pill form given every six weeks.The other would be given intravenously every 3 weeks. My thought is right now to start on the pill form of the chemo and then try and see what clinical trials are available either here or at Duke in the meantime, but I have to let the doctor know of my decision when I see him on the 26th of this month.

I had a suspicion that it was not going to be good news just because some of my issues have seemed to worsen recently. My left leg has been still kind of weaker, dragging my foot when I walk. The forefinger and thumb on my left hand are still giving me problems: gripping things, typing and holding my phone, getting out of chairs or using a toilet in the restroom --all of this has really become frustrating. To hopefully alleviate of this, my doctor increased the dose on the steriod Decadron (it had been stopped for a while and then I went back on it but at a lower dosage). So incompetent customer service people, Jehovah's Witnesses knocking at the door, ignorant drivers who don't like stopping for pedestrians with the right of way -- get ready for more ROID RAGE!

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.

2015: Bye, Felicia

So a year ago at this time I finished my third day back at work. The state hadn't called me back after the 2011-12 LIHEAP season ended in May 2012, thanks to budget cuts and my being last in seniority. But out of the blue last December they finally had enough people leave or some more money in the budget.

There is much I dislike about the job. Not in any particular order: the decrepit computer system, the building that is essentially a germ factory, with the HVAC system that often keeps it too cold in cold weather and too warm in warm weather, the mismanagement of the agency, the time it takes me each day to get to and from work via SEPTA...but with no other prospects and my finances in dire straits I had no choice but to go back. But I was determined to spend this summer in an intense effort to find another job.

Then, one evening in April, my face started twitching.

The whole you-had-a-small-stroke-oh-wait-it's-brain-cancer saga and the 6 weeks of daily radiation pretty much wrecked my plan for finding new employment. And then the state called me back to work in September with everyone else. While the pay is a help, I now have some medical bills in addition to my other debt. And I hate my job as much as ever, if not more. And I'm stuck in it until sometime in May, when I'll be free to try again to find something better.

Unless my body betrays me some more.

So basically what I have to say is this:

Dear 2015: drop dead.
Dear 2016: be better than 2015 or else. Don't fuck with me. I'll cut a bitch.

My Anger Stages (RE-POST)

(I originally posted this in early August. Even though it was published, the Blogger app on my phone still listed it as a draft. I deleted the "draft." It ended up deleting the post itself. Fortunately, before that I had it open on my desktop, available to copy and paste.)

I came up with some self-analysis this week when I lost my temper while having difficulties straightening out the dispensation of my chemo pills at the oncologist's office over the last two weeks. (Not sure whether it was the pharmacy, who had to give me the initial supply, or the staff handling the transactions, or my insurance company. I won't go into details but I think there will be no future problems.)

As I see it, I have three stages of anger.

Stage 1: I am upset but explaining things in a calm, controlled voice. Example from Wednesday: me to my oncologist: "...when they (nurses/staff) say to me that 'there was a miscommunication' I interpret that to mean that they are placing at least some of the blame on me. Even if that wasn't their intent, that's how I feel."

Stage 2: This is the stage I reached with the nurses/staff 90 minutes after seeing the doctor and still waiting for my week's supply and being told I may have to wait another day: yelling. "This was supposed to have been resolved last week! This is unacceptable after all that happened last week! I am not going through this EVERY WEEK! I AM NOT LEAVING HERE without my meds!"

Stage 3: Similar to Stage 2 but with lots of cursing.

I suppose there could be a Stage 4 that includes physical acts such as throwing or breaking things, or worse. Let's hope we never find out.

Post-Second Surgery #cancerisabitch Update

Previously on "Joe's Adventures in the Medical System..."

Anyhoo...my second surgery ended up not happening until Friday, November 20th due to a combination of insurance company bureaucracy and a primary care doctor's office that was either closed when it's normally open or whose staff is a touch incompetent when turning their phone system on and off. Oh, and on Thursday the 12th, the night before it was originally set, I got a call saying they had to cancel because an important piece of equipment (that helps guide the surgeon to the points he needs to work on) was malfunctioning and had to be repaired. So instead of surgery they had me get another MRI to make sure it was as current as possible. Boy, weren't they surprised when I showed up for work the following Monday!

The surgery went well, and the immediate aftermath (meaning, when they woke me up and took me back to my room in the Neuro ICU) was infinitely better than the last time. Much more comfortable. Also, much (but not all) of what they saw on the MRI was actually scar tissue caused by the chemo pills and radiation treatments during the summer. The next day, after the physical therapist visited and I passed her walking test, the weekend neurologist covering the unit suggested I was well enough to go into the "step-down" unit (as described here). I made it quite clear that it was not happening. I believe my exact reply went like this: "NONONONONONOIWILLNOTGOTOTHESTEPDOWNUNITIWILLSIGNMYSELFOUTIFIHAVETO"

So I was actually moved to a regular room instead, and the next day I was released. Since then I've been at home, resting or going to the movies or doing a bit of shopping when my energy levels allowed. I had the neurosurgeon's office fax a letter to work informing them of my followup exam date (which is tomorrow) and that a determination would then be made as to when I can return to work. (Ugh.)

Meanwhile, today I had followups with both my chemo and radiation oncologists. When my chemo doctor explained what he felt had to be done next, I realized I was not gonna remember all of this sufficiently to inform the family and friends (and whatever strangers happen upon this). I was actually about to ask my doctor for paper to write on! Then I remembered my Galaxy Note 4. The one that came with a pen. He kindly gave me a minute to remember how to write a note on the screen.

Because the tumor did begin to grow again (and the pathology report did again show it was cancerous, BTW), he felt that the chemo and radiation did not work well enough and that, at this time, there won't be a resumption of chemo pills. Instead, in two weeks I will start getting a drug called Avastin. This will be given intravenously every two weeks (So I'm going to be working partial days every two weeks). Avastin, it is hoped, will slow the growth of tumors. The treatments will continue as long as it's working. It doesn't cause any nausea/vomiting but there is a chance of blood clot issues. They will need to monitor that and I'm supposed to try to be as active as I can, but for now I won't have to go on baby aspirin or blood thinners. The chemo doc wants a followup MRI in about 2-3 months. He thinks my neurosurgeon may want it sooner, though. Either way, if the Avastin by itself doesn't produce results, he would then want to add another drug to the mix and that one would have nausea/vomiting side effect potential. So let's keep our fingers crossed.

The radiation oncologist says there will be no further radiation at this time. The current information doesn't indicate it would be helpful. She said that, depending on what happens with the Avastin treatments, there may be some radiation treatments but only on a small pinpointed area. Nothing for now, however.

Further updates as they happen. Or eventually. And, once again, I thank everyone who has been praying and wishing me well and all that good stuff. It is very much appreciated.

More Surgery. Yay! #cancerisabitch

I guess the title says it all, so...goodnight, everybody!

(Pauses, notices no one leaving)

I guess not. Oh, well. So after the six weeks of radiation and chemo pills ended, and I had to wait 6 to 8 weeks for the radiation effects to fade before having another MRI, and in between I screwed up the next round of chemo pills because I was supposed to take a dose a day for five days in a row but instead skipped a few days before taking a second dose, I finally got the followup MRI last week and visited my neurosurgeon today.

The MRI showed that there's a tumor that's started to grow in the same area where they removed it the last time. It isn't very large but it's large enough that it can be removed. The doctor said that the aggressive approach is to remove it now. Otherwise we can wait and monitor it with more scans while continuing with chemo. I'm going with the aggressive approach.

But part of me wonders, if it's going to keep growing back, possibly quickly, what would be the point of having surgery multiple times in a fairly short period of time?

So I'll be scheduled for surgery on or about the 30th. That would mean I can't attend the huge Temple-Notre Dame game on the 31st. And that last sentence, referring to a huge football game involving an unbeaten, nationally ranked Temple team, is about as surreal as my life right now.

My Sports Tees And Miscellaneous Caps, Part 4.5

Not Part 5 because it's so short. On Friday I celebrated my final radiation treatment with a Phillies ticket via StubHub, behind the visitors' dugout along the third-base line. Face value: $70.00. I paid $32.75. And the Phils won. After the game I stopped in the store to check out the merchandise, hoping to find something marked down or on clearance. That wasn't happening. Things are definitely more expensive at the ballpark. However, they did have a sale on caps: buy one at regular price, get one for 50 percent off. I wasn't going to buy any until I spotted the one on the left and succumbed to PPP (Pride-related Peer Pressure).

The other cap, however, had an interesting tag on the inside that I didn't notice until I got home:

So when I wear it, I'm wearing soda bottles on my head!

This last one is what the Phils gave fans who purchased their birthday greeting package in 2013 (you get a cap, your name on the scoreboard and confetti thrown on you by a performer as he or she sings Happy Birthday). My friend Kurt and I, who were born 20 years apart on the same day (I'm the younger one, no matter what the birth certificates say), went to the game that night and got confetti'd...or confettied?...spell check in Blogger accepts the former but not the latter. Okay, confetti'd it is.

Another Health Update

Picking up from where I left off here:

Yesterday, I completed my six-week radiation treatment at the Cancer Center at Aria Torresdale. Every day, Monday through Friday, I showed up and got zapped. Most of the time I was in and out very quickly, but there was a stretch of a few days about halfway through in which there were issues (either with their machine needing a replacement part, or emergency cases being sent from the main hospital to the Cancer Center). One day I had to wait over 90 minutes. Last two weeks or so were an absolute breeze. Once a week I saw the radiation oncologist for a brief checkup, including looking into my mouth for signs of thrush...thrush! Heh. Everything has checked out fine, though.

Here I am on the table. They were kind enough to take a pic for me. I thought it might be weird but it seems I'm far from the first person to ask. The mask on my face was molded prior to my first treatment. It's snapped into the headrest and is designed to keep my head and face aligned properly, as the radiation is focused on very specific targets.

On the chemo end, I had issues with the chemo oncologist's staffers and/or the pharmacies dispensing my chemo pills (sort of described here). After getting all of that corrected, I took the chemo pills daily. Again, I saw the oncologist (or physician's assistant in a couple of cases when the doctor was on vacation) weekly. They took blood at each visit to check my cell counts. Again, everything has checked out fine. I am, for now, finished with the chemo pills for a while.

I'm very happy to report that throughout this time I've had no nausea or vomiting. That in itself has made my life much easier. Nor, to my knowledge, did I have any short-term memory loss. As far as I can tell, my level of forgetfulness hasn't changed. I mean, the t-shirts shown at the end of this post were both purchased before the health problems began. However, my hair did start falling out. It was pretty short to begin with once I finally got a haircut to even out the shaved-for-surgery part with the rest of my hairline, but when there was hair on my pillow two days in a row I decided it was time to keep my head shaved for a while. I'm sure you've seen various pics on my social media already, including the one where I compared myself to Lex Luthor, but I thought of another one, which is a better match because of the facial hair and glasses (and cancer diagnosis, too). Separated at birth?

 

The next steps come towards the end of September. I have followups with the chemo oncologist on September 23rd where we'll set up the next round of chemo. The general plan as I understand it now is to increase the dosage I take, but I'll only take it a certain number of days rather than on a daily basis. On the 30th I go back to the radiation oncologist. Between the two, we'll have to determine the time I get my followup MRI. I saw the neurologist last week and he said that they have to let the treatments work through my system so the followup should be about 6-8 weeks after the last treatment. The other day the chemo doctor said that it should be 2-3 months. (Two months is about eight weeks, of course.) I explained how I felt that, when I was originally thought to have had a small stroke, it took new symptoms and hospitalization for me to get a new MRI in June. I feel that had I had one in May, when I initially followed up with a neurologist, the tumor would have been found sooner. So when I go on the 23rd I will be very clear that I want the MRI done as early as possible. Eight weeks from yesterday is October 23, so I'll want it done very close to that date, if not earlier. After that I'll visit the neurologist again and I guess I'll have a better idea of my long-term prognosis.

On my diabetes situation: I had the A1C test done again in mid-July. My A1C score (8.4 or 8.6, I forget exactly, back in April during my first hospitalization) was down to 5.7 -- barely above the level where you are considered NOT at risk of diabetes. I'm still on the diabetes meds and watching my carbs. Maybe, with the passage of time and continued good results, I'll be able to get rid of those meds as well, but even if I don't, that's okay. My weight is down to 225 (undressed, add about 5-6 lbs. when I'm fully clothed) and I am comfortably wearing pants with a 40 waist. I've been as high as a 48, and was at 44 prior to April. I swear, at some point if I try on pants with a 38 waist and they fit, you will hear my screams no matter where in the multiverse you are. And even if I stay where I'm at, the fact that I am being careful with the carbs but still having some of the snacks I like (portion control, people!) makes me feel confident that I will never again that much weight. I've gotten rid of a lot of my larger clothing and will do some more in the coming weeks. (That reminds me: I have to get new dress slacks soon. Shorts weather won't last forever.)

So now my schedule is completely free until the 23rd. I can travel (well, depending on the cost) again! That is, unless I get called back to work, of course. If I do get called back (which isn't guaranteed; it depends on how many jobs are available and how many ahead of me choose to return, as I'm last in seniority) it shouldn't be within these next couple of weeks. I'm a bit torn. Part of me wants to be called back right away because the other two times I was hired it was after everyone else started and I had to be trained/retrained on my own (or I basically read the stuff myself) and it made doing the job more difficult for me in a lot of ways. On the other hand, if they don't call me back I can finally file for unemployment at the start of October.

For the most part things have gone so smoothly, and I'm even getting things in order (such as getting my comic books boxed up, all of my personal papers organized, getting rid of some of the crap in my basement, etc.). Due to a combination of the structured schedule (radiation every weekday at noon) and, to some extent, my meds, I have become one of the things I abhor the most: a morning person. :) That has helped me in the above-mentioned tasks and given me more time to get to more movies, a few Phillies games, and other local excursions.

Again, I can't thank everyone enough for the kind words, wishes, prayers, thoughts, vibes, jokes, etc. They are very much appreciated.

Just one last thing, because this has truly, beyond everything else, angered me.

I had 30 radiation treatments. 30. THIRTY times I had radiation being zapped into my body. And NOT ONCE, in all that time, did a spider show up and bite me. Not once!

I WANT MY SUPER-POWERS, DAMMIT!

The Paparazzi Got Baldy!

Found this on page four of last week's PGN...note the handsome bald gentleman perusing the photographs on the table...

And, because paparazzi...



(Oh, and in case you're not keeping up on Facebook/Twitter, I'm currently shaving my head since the radiation treatments and/or chemo pills led to my hair starting to fall out.)

Downtown From Ben's Bridge

Another post moved from the photo blog. A pic of Center City from the Ben Franklin Bridge, taken during the Walk for Hope, a fundraiser to fight cancers affecting women, on 9/23/2012. I walked that year in honor of Mom. I guess I have to do one of these walks for myself now...

Health Update: #cancerisabitch

So, yes, I am officially a PWC. Person With Cancer. The tumor that was removed from my brain is called a glioblastoma, a grade 4 tumor. It's the most aggressive form of malignant brain tumor.

More on that later. For now, let's step back in time in case you haven't been keeping up on social media with my medical odyssey. And this is going to be long, because it's the first time I've set down everything that's gone on in the last three months. If you reeeealllly need to just get to the cancer detail, click on this "after the jump" link.

I sat down and started eating dinner on April 8th when I noticed the left side of my face becoming numb, followed by spasms or twitches in the same area. I called my brother Andy to ask him to take me to the emergency room, and as soon as I hung up with him the spasming stopped and the feeling returned to my face. The whole thing lasted maybe five minutes. Thinking it was perhaps a food allergy, I didn't go to the ER that night. I saw my primary care doctor the next day. He said it was probably a transient ischemic attack, commonly called a mini-stroke, and told me I needed to see a neurologist. Late that afternoon, I woke from a nap and it happened again. It didn't last as long but I knew I had to go to the hospital. Of course, being me, I took the bus (SEPTA route 84 to Aria Torresdale).

I was admitted and an MRI was done the next day. The diagnosis was that I had a small stroke. I was put on aspirin and plavix, a blood thinner. In addition, I was diagnosed with Type 2 diabetes. So that meant two more prescriptions (glipizide and metformin) as well as checking my blood sugar daily and changing my diet to limit my intake of carbohydrates (which converts into sugar in the body), and they put me on lipitor for my cholesterol (which I have never before been told was a problem). Adding to the synthroid I've been taking for a couple of years now (underactive thyroid), that makes six different medications daily.

(A diabetes note: I'm not 100 percent convinced I have it, or at least that I need that much medication. I feel like the numbers on the A1C test, which gives a record of your blood sugar over the last 6 months, were unusually high because at the end of December I went back to work at LIHEAP and, with the travel time on SEPTA being so long, my eating habits became much worse than they already were. I'm having follow-up blood work done next week and then seeing my primary doctor, so we'll see how it stands.)

The spasms in my face continued on a daily basis, even multiple times daily, at varying intensity but always brief. The doctors felt it might be muscular in nature but saw no other reason to keep me in the hospital. So I was released after a three-day stay. For the next two weeks they would ebb and flow, sometimes seeming like they were fading away entirely until a stronger one would hit. On April 25, a Saturday, I had an episode about noonish, and then a second, stronger one while I was out having lunch and shopping. At around 5:30 it happened again, but even stronger, and at first it didn't seem like it was going to stop. I got really scared and called 911. The operator had trouble understanding me because the spasms affected my voice. I was telling her "I think I'm having a stroke" and she had no clue. I tried yelling "STROKE! STROKE!" but it sounded like Scooby-Doo was saying "ROKE! ROKE!" She connected to (I think) the dispatcher and, as they were sending an ambulance, the spasms finally stopped and I was able to be understood again. As soon as they hung up, the ambulance arrived.

The neurologist who saw me in the ER was not there in person but via video feed. (Gotta love the health system where one specialist has to cover multiple hospitals from a camera.) He said the spasms were actually focal seizures, seizures in one specific area as compared to grand mal seizures than someone with epilepsy has, and that they can occur when someone's had a stroke. This time I was released the next day and put on keppra, an anti-seizure med. (Medication list increased to seven items; in my most recent hospitalization they put me on blood pressure medication but now I'm off the plavix and aspirin for good so we're back down to six.)

On May 19th I had an outpatient visit with a neurologist, who doubled my keppra dose because the focal seizures hadn't really been affected by the initial, more mild dose. I was scheduled for a followup in early July. After a while, the spasms in my face were not as strong, and not happening as often, and some days didn't happen at all. It seemed like things were going well. My speech still sounded a little funny, though, and then things got worse as we got into the middle of June.

My left hand became weak and I had a sensation of lost feeling in my fingers. I couldn't hold on to things, especially small items such as keys. Every time I was going into my house, I'd have trouble grabbing the keys out of my left pants pocket, and then holding them once I did get them out. Turning doorknobs or water faucets or lids on bottles with my left hand got more and more difficult. My speech seemed to get worse. I lost the ability to type. I constantly hit the wrong keys with my left hand. Using my cell phone, awkward enough to begin with because of its size (Samsung Galaxy Note 4), became a problem. I had trouble holding it with my left hand while tapping the screen with my finger on my right hand, and when trying to grip it more securely my thumb and forefingers on the left hand moved to the screen and inadvertently hit icons, and generally interfered with whatever I was trying to do. Or if I was on a phone call, my arm would slip and the phone would move away from my face.

On Tuesday, June 16, I called the outpatient neurologist and asked if I could move up my scheduled July appointment. By some miracle, they had an opening the next day. That afternoon I tried filling out a form (in the old-fashioned way, with a pen). I was constantly misspelling words, reversing letters and making a general mess of the form. I went to the neurologist the next day and he said I probably had another stroke. He wrote out instructions on his prescription pad for me to get an outpatient MRI and to start physical therapy with Moss Rehabilitation Center, but because they thought I might need a referral from my health insurance company, I had to go home and wait first. Walking to and from the office, bus stops and my house, I noticed my left foot was dragging. I wasn't taking full steps the way I was with my right foot. I got home and fell asleep in front of the TV. When I woke up, I saw that I had a voicemail. It was the neurologist's office, saying that they didn't need prior approval from my insurance and asking me to call and get the phone numbers to schedule the outpatient MRI and rehab. I had trouble even placing the call -- hit the wrong buttons and even dialed a wrong number once. When I did dial correctly, the office was closed for the day.

I knew I couldn't wait. I was getting worse and who knows how soon that MRI could've been scheduled? I called my brother and went back to the ER.

The hospital protocols, for some reason, do not allow for MRIs to be done for people in the emergency room. You have to be admitted first. So they did a CAT scan, and once they saw that result I was admitted to the Neuro ICU. (This meant I was constantly hooked up to a heart monitor that wasn't portable and a blood pressure cuff that recorded my BP hourly, as well as regular checks of my temperature and blood sugar. Sleep was very difficult at first, although it got a little easier each night. Every time I needed to use the bathroom I had to let the nurse know so they could unhook me. That was a pain, but the worst was yet to come. I had great nursing care up until the last night.) The MRI the next day confirmed that I indeed had a tumor that had to be removed and there was edema, or swelling. But first I was put on a steroid, administered through the IV line, to reduce the swelling, and taken off the aspirin/blood thinner meds for 5 days before the surgery.

This diagnosis actually made me very, very happy. A stroke? Going through therapy to try and function and "re-learn how to do things" and whatever would be awful, time-consuming, frustrating. A tumor (cancerous or not) causing all my issues? Cut it out and I'll get back to normal? Awesome! I was already noticing improvement just from the steroids reducing the swelling.

On Monday, June 22, the afternoon of my 5th full day in the hospital (and the 6th anniversary of the establishment of this blog, although with the lack of posts recently...), after doing another MRI to create a detailed "map" of the area of my brain where the surgery would be done, I was whisked off to surgery. Various people were introducing themselves and explaining why they were there, and the anesthesiologist then took over. I went out rather quickly. I remember a moment where I was dreaming. It was nothing memorable, just some conversation, but it seemed pleasant enough.

A moment later there were bright lights and everyone screaming at me almost simultaneously. "JOE! SQUEEZE MY FINGERS! JOE! RAISE YOUR LEFT LEG! JOE! LOOK UP! LOOK DOWN!" and so on. And then I was whisked back to my room in the Neuro ICU. And I had a very uncomfortable sensation in my groin. As it turned out, while I was under they removed my shorts and underwear and inserted a catheter, which stayed in place all night. That night was very difficult. The next day the catheter was removed and I was allowed to eat again, and I was feeling better immediately. The followup MRI looked excellent. The neurosurgeon removed virtually all of the tumor. I was told based on the type and location that it was likely cancerous but it would have to be confirmed by the pathology report. But I could tell immediately that my brain was starting to fully function properly. I was able to hold things in my left hand longer -- even my phone. I could walk without my left foot dragging. I sounded more coherent. I could write words and spell them correctly.

So, if you've ever been hospitalized you know that besides the nurses, doctors are in and out almost constantly. I'm pretty sure some of these visits have no purpose but to get their names on the record so they get a cut of the amount being billed. Anyway, the following day (Wed. June 24), the entire morning and into the early afternoon, no one had come in except for a speech pathologist. She watched me eat and drink, and administered various tests -- word puzzles, brain teasers, memory stuff, then had me write down my name and address and write out a phony check -- to verify that my brain was working. It was, and still is (all you wiseasses can just shut up now). A little after two that day a neurosurgeon came in and examined me, and upon hearing of the speech pathologist's assessment, said that they just needed someone from physical therapy to watch me walk up and down steps, and once I passed that test they could move me to a regular room or even send me home. I was thrilled!

Except no one from physical therapy ever showed. I figured one more night wouldn't kill me. Just after 8 pm the nurse assigned to my room for that night came in and told me that because more patients were coming in and they needed the room, they would be moving me to the "step-down unit." I asked what that was. She said I would only need the blood pressure checked every two hours and they would put me on a portable heart monitor, so I could get up to use the bathroom. I asked if it was still a private room (like every room I was in during my three hospitalizations) and she said she wasn't sure, but I could sort of tell it wasn't. I told her I had the possibility of going home but the physical therapist didn't show, and that if I was not comfortable in this step-down unit that I was leaving, against medical advice if necessary. (Around this time my brother Tony texted me that he was on the way over to visit and I told him he might get to take me home.)

The nurse disappeared for a while. Finally she and an orderly returned to wheel me to the step-down unit, a short way down the hall. It was a larger room which could hold two beds, with curtains for privacy and a shared bathroom. The other side of the room was empty, so I decided it was okay. Five minutes later they wheeled someone else into the other side.

He wasn't a problem, although he got chatty with every nurse or aide who came to see him. He was in a bad auto accident and hadn't really gotten out of bed yet. But in the unit across the hall were two men. One moaned in pain and called out for help or for his mother or for others constantly, while the other begged and pleaded for him to shut up. This went on ALL. DAMN. NIGHT. Between that and the nurse's aide coming in to check my vitals I could not fall asleep. I became more and more annoyed and even listening to music on my phone (with headphones) did not help.

Note above that I said "nurse's aide." I had a nurse assigned to me but other than when I first got into that unit, the idiot only came to see me twice. The first time was at 4:30 am. Just when I finally started drifting off into what might have been an hour or two of sleep, I was startled back into consciousness as she stood at the foot of my bed. "I noticed that they wrote down for you to use these compression wraps on your legs for your circulation." (I had these in the other room. They're plugged into a unit that compresses and decompresses them regularly to keep your blood flowing. They didn't move them with me to this unit.) She continued: "We could put them on you for the night and during the day--"

"I will NOT be here during the day. I am getting out in the morning no matter what it takes."

"Oh...um, well, they also wrote down that you could wear compression stockings, which go on your legs--"

"I don't need those. The wraps will be fine."

She left -- and never brought back the wraps or the stockings! She interrupted my final, desperate attempt at sleep for nothing! She did return one more time, before her shift ended, with some paper. "I brought you some information on synthroid." Why she picked that, and not any of the other meds, including those they put me on just since June 17th, I have no idea.

"I've been on synthroid for years. I don't need that."
"Oh...well, it's just because of the government."

At this point I wanted to completely explode, and perhaps throw her out a window. Somehow I managed to stay composed and told her "just leave it if you have to." She did, and I never saw her again. I used one page as a bookmark for the "Afterlife with Archie" graphic novel I read later in the morning, and left the rest behind.

Finally, the day nurse came in for the first time and before she could do anything other than introduce herself I immediately began my controlled rant (not these exact words, but close): "I could have possibly been sent home yesterday except no one from physical therapy showed up, and then I was moved into this unit where the man across the hall moaned all night and the other man kept telling him to shut up, and I did not get ONE SINGLE OUNCE OF SLEEP all night." (I may have mentioned the other nurse being a moron. I'm not sure.) "So this is what's going to happen: I'm going to eat breakfast and get cleaned up. Then the physical therapist will come and see me walk on the steps, and then the doctors will discharge me and you'll take all this stuff (heart monitor leads, IV lines) off and I will leave. This will all happen by noon or I will walk out and you will not stop me. This is not up for discussion or debate. I am leaving by noon."

They got the message and I was out by noon.

So in the last week and a half I've gotten stronger and stronger. My hand is nearly fully functional. (Just look as all this typing!) I am very close to 100 percent back to normal. My speech still sounds a little off, but I certainly can be clearly understood, and there may be a little droop remaining on the left side of my face but that's it.