Always something

February 27th, 2014
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So this is a new one, even for me.†

Salivary gland stone. Who knew that you could get stones in your salivary glands?! Apparently this is a residual side effect from the treatment last summer for thyroid cancer.

You may recall, after they removed the thyroid, the treatment to kill any leftover cancer cells was swallowing a pill of radioactive iodine. The main side effect from that, aside from potentially contaminating people with radioactivity, was swelling of the salivary glands leading to dry mouth.

The salivary glands usually take a little while to fully recover, and mine have never truly returned to what they were before taking the pill. Dry foods such as crackers or pretzels still turn to dry, pasty dough in my mouth.

So the lack of saliva production can lead to, you guessed it, a stone in the gland itself. Luckily, these types of stones can often dissolve simply by stimulating saliva production. Recommendations to make that happen so far have included sugar-free gum and lemon drops.

The gum seems to work best, but others have suggested li hing mui or lemon peel. If you have any others, feel free to leave in the comments!

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† - Up until now I didn't think anything could top iritis for ailments I've actually had that sound made up.

 

Bionic presentation

February 26th, 2014
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For anyone who is particularly interested in what the past five months have been like, you are cordially invited to watch this very poor quality, 40-minute video that is mostly darkness, with below-average audio:

Production qualities aside, the video is of a presentation I gave to the Kiwanis Club of Olmsted Falls, Ohio. One of its members, a former English teacher at my high school, asked me to give a presentation on health and medical issues that I cover in this blog, but also to talk about the recovery process from the various surgeries I've endured. As best as I can recall, it's been 18 surgeries total, including the four in 2013 (three on the leg, plus the thyroidectomy).

Good luck trying to make out the PowerPoint presentation, but here was perhaps the key slide† from it:

Evolution2

There you can see the evolution of the artificial femur. At the far left, you see what the hardware looked like at the beginning of this five-month journey. September 2013 is an image of the antibiotic spacer that was placed to kill the infection. And the December 2013 image is what it looks like now, with the state-of-the-art prosthesis.‡ (The image of my left leg is there simply for comparison purposes.)

If you can somehow get through all 40 minutes of that video, the point I'm trying to make is that surgery does not have to be a terrible experience. There are ways to adjust, cope and come out better. Among the keys is communicating with doctors every step of the way.

With any luck, I may be able to give this presentation again, and if that ever happens, I'll try to be armed with better audio-visual equipment =)

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† - This is actually a variation of the actual slide, which contained an image that may or may not have been copyright protected.

‡ - For anyone wondering, yes, it sets off the metal detectors at the airport, federal buildings and courthouses.

Around the bend

February 20th, 2014
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This isn't much of an update, but there's a video for it, so there's that =)

Unlike last month, when the knee hand't bent in 17 weeks, now the knee bends fairly well. It's right at the 90 degree mark, which is where my surgeon wanted it to be by this time. Still limited weight-bearing -- haven't ditched those crutches yet -- but it's getting there.

Above is the video my newest hamstring workout, which is basically just bending the knee, but with a slight amount of resistance. Because of the limited amount of exercise that's been allowed, out of caution for tearing down some of the freshly rebuilt muscle and tissue, it's been pretty much a holding pattern since I first bent the knee last month. The range of motion is slowly coming back, and the muscle strength, too.

Things are progressing, though, and there is an end in sight. Maybe not an end to rehab, but an end to looking out the window and seeing snow, not to mention the cold temperatures!

 

 

For the kids

February 19th, 2014
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If you are not from, did not go to school, or did not otherwise spend any significant amount of time in Pennsylvania, chances are you have no idea what THON is or means.

The event takes place this weekend on the main campus of Penn State University.

For the uninitiated, it's the Penn State IFC/Panhellenic Dance Marathon, billed as the largest student-run philanthropy in the world. It's held every year as a fundraiser for the Four Diamonds Fund, an organization that assists children treated at Penn State Hershey Children's Hospital and their families. The mission is to "conquer childhood cancer."

The Four Diamonds Fund picks up where insurance leaves off, enabling families to solely focus on care for their child. Assistance from the Four Diamonds Fund ensures counselors, social workers, music therapists and other specialists are available to provide comprehensive care in a family-focused atmosphere.

Although it focuses around a single weekend, the campaign is a year-round effort, engaging more than 15,000 students across the state. 

The year culminates with a 46 hour no-sitting, no-sleeping dance marathon known as THON Weekend. This event is held at Penn State's Bryce Jordan Center each year in the month of February.

In 2013, THON raised a record-breaking $12.37 million and has brought in more than $101 million since 1977.

For a complete guide to the event, check out the The Patriot-News of Harrisburg.

Flashback: Chemo

February 13th, 2014
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Flashback: Wednesday, Feb. 13, 1985 (what's this?)

Well, that was kind of terrible. Chemotherapy started today with the first of what is supposed to be five treatments of medicine directed right at the tumor to try and shrink it. If this works, they will then go in and do the thigh bone transplant.

Unlike the biopsy, I was definitely awake for this procedure. They took me into an operating room and cut into the big artery in my thigh, the femoral artery, which basically provides blood to the thigh and leg. They had to be very careful, because if they cut too much it runs the risk of bleeding too much. But shooting the medicine right at the tumor using this artery is the best way to get at it, because the growth is sort of wrapped around the end of the femur near the knee.

All they did was give me a little numbing medicine in the upper thigh, before the surgeon made a really small incision near the top of the leg. I could see it on the imaging machine above the operating table. Then they slowly snaked the catheter down the artery to point it at the tumor. I had to stay really still for what seemed like the whole day, but was only about an hour total. Afterward they gave me something really strong for pain.

Best thing was waking up after that to be in my room with all these Valentine's Day decorations. All my classmates signed cards and some of them sent me flowers. I haven't been to school in a couple of weeks, but I think my sister or my brother probably told my teachers already that I'd be missing a lot of school.

They say this medicine will probably make me sick, and could make my hair fall out. Right now I feel lousy, like I was run over by a truck. My stomach is heavy and I have only been taking liquids, like ginger ale and Jell-O. It should be a day or so before I try to eat regular food, but I'm not really looking forward to it. At least my hair is still there, but it's only been a day.

There's going to bi five of these treatments before they do more x-rays and scans to see if it worked. I'm not sure what they will do if it doesn't work. My parents, though, were relieved that they didn't have to amputate my leg. This thing they're doing for me is called "limb-salvage surgery," where they remove the tumor without cutting off the limb. Other kids my age have had to had their legs amputated, like Ted Kennedy Jr. and the Canadian runner, Terry Foxx.

** Chemo. That's an interesting sounding word: chemo. Almost sounds like a Hawaiian name. I wonder what living in Hawaii is like? Now that would be something. I doubt that would ever happen, though. It's too far from home for me, especially with how long it takes for mail to get back and forth and with the cost of long distance phone calls. The only way I'd be able to do it would be if I could call with an unlimited amount of minutes. Even better would be if someone invented a way to talk to people over a video link., like in The Jetsons. **

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** - Creative embellishment.

Flashback: Positive?

February 7th, 2014
By

Flashback: Thursday, Feb. 7, 1985 (what's this?)

So I guess we start chemotherapy next week.

Got the news today. The way everyone was talking it seemed like it was a foregone conclusion. So the plan is to do five treatments of chemotherapy and then have the big surgery after that. They say this will shrink the tumor and then they will be able to do the transplant with the steel bone to get the tumor out.

I've learned that his has been a lucky coincidence, although it does;t feel very lucky. But the swelling in my thigh was an early sign, so they say they think they caught the tumor in time and I have a good chance of getting through this. So that's good. Chemo supposedly will make me sick and want to throw up. My hair will probably fall out. I guess different people handle it differently.

I'll probably miss a lot of school. I've missed all of this week already and with chemo next week will probably miss all of next week. They say there is a tutor here in the adolescent ward, so someone should be able to help me keep up. Either my brother or sister will stop by my teachers' rooms to get my assignments.

I finally saw the scar from the biopsy, too. It felt like it was my whole leg, but it's only about an inch long. Still swollen, though. They say that's because of the tumor.

It was really weird. They said the biopsy was "positive." At first I thought that was good news, but they told me that means that it tested positive and that the tumor was malignant. Seems to me that they should call that "negative."

I think they're going to send me home for the weekend, though, so it looks like I will get out of here tomorrow. Then we'll come back Monday.

** Found out today that this is the same hospital where the Cleveland Browns get treated. Can't wait till they get to the Super Bowl! I'm sure it will happen soon. The 49ers victory parade looked pretty cool. Cleveland came close a few years ago, but Brian Sipe threw that interception in the end zone. They just had a pretty bad season, but I'm sure they'll come back and make it there some day! **

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** - Rose-colored embellishment.

 

 

 

Flashback: Biopsy

February 5th, 2014
By

Flashback: Wednesday, Feb. 6, 1985† (what's this?)

So today (Wednesday) was the biopsy. They admitted me on Monday of this week to run all kinds of tests like blood work, X-rays and scans.

I don't remember much from the actual procedure. They put me under pretty heavy sedation. All they did was put a small incision (the leg is still wrapped and the whole area is a little numb) to take out a small sample of tissue from the tumor.

They will test it now and probably let me know the results by Thursday. There's always a chance that it's not malignant, but the way everyone is talking around me it sounds like it probably is. One of the doctors said they would probably start chemotherapy next week. Guess I won't have to be at school for Valentine's Day.

Pretty boring here. They have me in a large room with four beds, but there's only one kid here in the bed net to mine. He had a private room earlier in the week, but since he's about my age we get along pretty good and so he agreed to be in the same room. I saw him earlier in the week going back and forth to his room with games and puzzles. He's from near Pittsburgh. Pretty neat that the Clinic attracts people from all over the world!

Meanwhile, all I do is watch a lot of TV. The mornings are all filled with game shows until about noon. "Deal of the Century," "Press Your Luck," "The Price is Right" and "Super Password" are all in a row before the news and then soap operas. Afternoon cartoons and stuff start around 3 p.m.

My roommate here keeps talking about this new computer he wants to get - the Apple IIC. I remember the commercials from the Super Bowl. These Apple computers don't look like they'll be around that long, though. They're really expensive. We just got a Commodore 64, and we use Tandy TRS-80's at school.

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† - This post actually was meant to be posted on Thursday, Feb. 6, 2014. I got posted today, Wednesday, because I got confused. The actual day, Feb. 6, 1985, fell on a Wednesday, which led to the mix-up. =)

 

World Cancer Day

February 4th, 2014
By

Tuesday is World Cancer Day

It's hard to believe there is anyone in the world today who is not affected by cancer in some way. Whether it's the patient, family member, friend or even just a friend of a friend, we all are probably, at most, only one or two degrees separated from the disease.

According to the International Agency for Research on Cancer:

"In 2012, the worldwide burden of cancer rose to an estimated 14 million new cases per year, a figure expected to rise to 22 million annually within the next two decades. Over the same period, cancer deaths are predicted to rise from an estimated 8.2 million annually to 13 million per year."²

Sponsored by the Union for International Cancer Control, it's billed as a day when health organizations, providers, patients, family, friends and other touched by cancer send a message that eradicating cancer should be a global priority.

According to the UICC, there are more than 500 events scheduled around the world³ along the 2014 theme: "Debunk the Myths." Those myths being:

myths

The site has plenty of ideas on what you can do to mark the day. One of those happens to be to engage with your social media network, which means you may see a lot of avatars changed to something purple, the official color of World Cancer Day.

I'm going to borrow something I found on the Facebook page of an organization called StupidCancer.org, a group that was founded in 2007 as a support community for young cancer survivors.

"... It's not about wristbands, ribbons, body parts, colors, contests or territoriality. It's about celebrating life and the incredibly inspiring stories and journeys that make the cause ever so more empirically important. Thank you for being awesome."

Personally, I'm a big fan of debunking Myth #1, so if you have an opportunity have at it and just talk to someone affected by cancer. You can talk to me, but even with the diagnosis in July, cancer is so far behind in my rearview mirror I can barely see it anymore! =)

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¹ - Admittedly, until I saw a commercial for it during the Super Bowl, I was unaware of this.

² - The full press release from the IACR here.

³ - According to the interactive map, there is nothing scheduled for Hawaii.

Flashback: 1985

January 31st, 2014
By

So this week and next marks the "anniversary" of when I was diagnosed with bone cancer. The year was 1985.† I was hoping to mark the occasion next year by celebrating 30 years of cancer-free living, but then thyroid cancer had to show up last July and ruin that. (Stupid cancer!!?) Alas, I'll have to settle for only marking 30 years since since defeating bone cancer.

Why two weeks? Unfortunately, memories are a bit fuzzy and I am not exactly sure of the precise date. I am piecing these dates together backwards from Feb. 14, 1985, which I am almost certain was the very first chemotherapy treatment. Subtract a week from that, when I believe the biopsy was performed, and that puts the detection date at or around Feb. 7. Roughly a week before that would be when we first went to the Cleveland Clinic for x-rays and the initial consult with doctors who first told us the swelling in my right thigh was very likely a tumor.

I have always used Feb. 7, 1985 as the date for celebrating my cancer "anniversary" - the day that it all began.

Here, then, is what I believe I would have posted had this blog existed 29 years ago.‡ Think of it as an extended version of Doogie Howser's computer journal that he did at the end of every episode. I'll probably do at least one more of these "flashbacks" for other key dates from 1985. (Please bear with me. I would have been a 13-year-old eighth grader at the time, so obviously my typing and grammar wouldn't be as good as they will come off here, but I'll try to capture some of the scattered-ness of my thoughts as I recall them.)

♦ ♦ ♦

Feb. 1, 1985

So this was a long day. We spent all morning and afternoon at the Cleveland Clinic. That place is HUGE!  First I had x-rays and then an MRI, which lasted about an hour. I think I fell asleep, though, so it wasn't as bad or as boring as they said it would be.

They said I was lucky though. My brother kicked me in the thigh at tae kwon do class last week and then my knee kind of buckled in gym class, too. We got an x-ray at Southwest, where my mom works, and then we went to my sister's gymnastics place to see their team doctor, who also works for the Clinic and is the team doctor for the Browns.  He suggested we go to the Clinic.

It's a little scary. My mom seemed a little worried when she told the Clinic doctors that the x-ray people thought it might be a tumor. I wasn't sure what that was at first, but then one of the doctors mentioned that it could be cancerous. They don't know how I got it. But they will start chemotherapy on it next week, so I have to take the week off from school.

It all sounds complicated. They told me they will go into an artery in my thigh and shoot the medicine directly at the tumor to shrink it. Once they shrink it, they will do a bone implant with a steel femur, knee and hip. I might lose my hair and I will probably get sick.

All of the doctors were very nice. But one scared me when the first thing he did was look me in the eye and say "We're gonna lick this thing! You and I. We're gonna beat it. We'll make sure of that. " I wasn't sure what he was talking about, because I didn't know a tumor meant cancer.

So after meeting with all the doctors, the last thing we did was go for the MRI scan. Then we went to Ponderosa.

They're not sure how much school I'm going to miss, but sounds like it might be a lot.

** It's a shame that here in 1985, nothing exists where I can tell all my friends about this all at one time. There should be some kind of mail system that I can do on a computer. Electronics are complicated though. Who would ever think of doing a sort of "electronic mail" that would reach my friends all at the same time. Maybe someone can invent something that. **

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- "A maturing Joe Piscopo left Saturday Night Live to conquer Hollywood. PEOPLExpress introduced a generation of hicks to plane travel. And I was in a barbershop quarter." 

‡ - Of course, had I known then that I would become a journalist, I may have had the wherewithal to keep a journal. As it is, I may have to spend an afternoon in the CCF medical record archives to find out how accurate my memories are.

** - Creative embellishment =)

77 degrees

January 30th, 2014
By

Improvement!

That headline reflects the degree of bend in the new knee -- an increase from the 65 degrees measured two days after it was first allowed to bend. (Not bad, though I had my hopes set on breaking 80 degrees after one week.)

Rehab continues as we get the new joint in condition to travel.

Not much else is new. Rehab gets slightly more strenuous each week, with a couple new exercises added to develop muscles in the abdominal core and calves -- both areas that need to be developed to help walking once full weight bearing is allowed. Right now, I'm still limited to only placing about half my weight on the new joint(s) as I walk with crutches. After six weeks that will be re-evaluated to determine how quickly full weight bearing can be restored.

More pictures and videos later as rehab continues.

UPDATE, Jan. 31, 2014: As of Friday, the bend was 85 degrees! Five more degrees until we reach the 90-degree target!