SWREN Logo

Sebastian's Cancer Journal

Home

My Rants and Raves

Living in Austin

Photography Stuff

Cycling in Austin

Reading & Literacy

-> Cancer



DONATE to Sebastian's
2008 Live Strong Ride

~ Scroll down to get the latest updates ~

~ Most recent update - August 24, 2008 ~


DONATE to Annie's
2008 Live Strong Ride




June 19, 2007
The Road So Far

Early in 2007, I went to the doctor because of a small, painless lump that I'd noticed under my right ear-lobe.  I felt fine, but, you know, you should always check out lumps.  My doctor said it could be nothing, but it could be lymphoma, so he said I should see a specialist and get it checked out more carefully.

The specialist said it wasn't lymphoma -- just a small tumor in the parotid gland (one of several salivary glands).  He said about 85% of such tumors are benign -- nothing to worry about.  And the other 15% are addressed through surgery.  Either way, he said I should just have it removed.  He said that we could schedule the surgery whenever was convenient for me, so I scheduled it for the first Monday after school let out -- June 4.

The surgery went fine.  This was my first surgery, so it was a new experience, but it really was fine.  He had to cut a nerve in my face to remove the tumor, so after the surgery, I could no longer feel my right ear (and some of the area around it).  No big deal -- it just feels funny to have a numb ear.  And he said that feeling might return in about 6 months.  All in all, I felt pretty good after the surgery.

Alas, I'm not usually allowed to feel good, so that feeling didn't last long.  One week after the surgery, the doctor was quite surprised to get the pathology report back stating that I had extra-nodal, low-grade, follicular lymphoma.

What does that mean?  Well, "extra-nodal" means that it was a lymphoma tumor that was not in a lymph node.  It was growing in the parotid gland.  "Low-grade" means that it was slow-growing.  "Follicular" just describes what it looks like when you look at it under a microscope.  And "lymphoma" means cancer.

Like I said, the doctor was pretty surprised.  I had asked him if I had lymphoma when I first met him, and he'd said, no.  I asked him if I should get a biopsy to be sure, and he said it wasn't necessary.  The poor guy didn't even read the pathology report until he sat down with me a week after my surgery.  And then when he did, he hesitated and stammered and said that I had to go see an oncologist.  To his credit, he got me a good one, and he got me in to see her right away.

That oncologist was not very encouraging. (I don't think oncologists are very happy people.)  She was professional, and listened, and wrote down everything I said.  But she said that lymphoma was tough to treat.  It is a disease usually found in older people -- not unheard of in younger people, but rare in people my age.  She said that the term "low-grade" sounds encouraging, but it really isn't good news -- low-grade tumors may be slower growing, but they are harder to treat.  

Usually what they do for lymphoma patients is they shrink the tumors as they grow, and try to extend the patient's life as long as they can -- 10 to 15 years is common.  Not terrible news if you are 65 years old, but somewhat depressing if you are 39.

She said that I was young and healthy and showed no other symptoms of lymphoma, so she wanted me to go see the lymphoma experts at M.D. Anderson in Houston.  She said that there was a research team there that did nothing but study and treat follicular lymphoma -- they would know a lot more than she would about what would be best in an unusual case like mine.

So, as I write this, I'm going throgh a bunch of tests here in Austin in preparation for my visit to M.D. Anderson in Houston next week.  The blood tests were easy -- no worries there.  The CAT Scan was swell -- quick and easy.  The full-body PET scan was a little harder (my nose itched the whole time).  And on Thursday, I'm having a bone-marrow sample taken.  I expect that one will suck quite a bit.

So that's where I am so far.  Other than being nervous about the future, I feel fine -- I am mostly over my surgery -- I went for my first post-op bike ride today -- I am back at the computer working.  I'm having tests run every other day (Thank GOD for AISD medical insurance!), and the worst I can say about the tests is that they are a little inconvenient.  I am on a restricted diet in the hours and days leading up to each of the tests, and I've had more "berry flavored" barium "shakes" than I care to think about.

My new oncologist in Houston is named Dr. Kwak (which is a little funny, but I'm told it actually rhymes with "clock"), and he is the most over-qualified individual I've ever seen.  Check out his biography here.  I haven't met him yet, but jeepers, if anybody can help me, I think he can.  I don't know what is going to happen, but I do know I'm in very good hands.



June 21, 2007
The Last Test (for now)

Well, if I was worried about the bone marrow biopsy, it was wasted energy.  The bone-marrow procedure involved hours and hours of preparation for a very simple procedure.  My appointment was at 8:30, but they didn't schedule the actual procedure until 11:00 -- and they were late at that.  Annie's mother Cecile, who works at the hospital, sat with me the whole time.  I felt so bad for her taking so much time away from her work to be with me, but she was incredibly gracious about it.  We just sat and talked all morning.  Me in my hospital gown and non-slip hospital slippers with three paper bracelets and IV bag. 

They took me in at 11:30 and had me lie on my stomach in a CAT-scan machine with my hiney hanging out.  The doctor used the CAT-scan image as a guide for the core sample -- six people were in there assisting him, and the whole thing took about 5 minutes.  No pain -- no problem.  They brought me back to the "post-op" room, where I was finally allowed to EAT.  For some reason, they wanted me to fast for this procedure (as a general rule, you have to fast for at least 12 hours prior to every medical procedure -- I've been hungry a lot lately), so I was ravenous by the time they got me back to post-op.  Again, Cecile was my angel, going to the cafeteria and bringing me back a feast.

For some bizarre reason, the doctor ordered that I stay in post-op for 4 hours.  I asked for 2, we settled on 2 and a half.  Cecile kept coming by and spending time with me, helping me pass the time.  She put me in a wheel-chair and pushed me around the hospital (I could walk, but "hospital rules" forbade it), and showed me some of the artwork in the halls.

Finally, I was ready to leave, but they wouldn't release me until they confirmed that I had a ride home.  So, Cecile's husband (Annie's stepfather) David left work early to come and get me and take me home. 

This whole procedure was so was much ado over nothing.  No pain during the procedure, and very, very little pain since.

Anyway, that was basically my last test -- I've had blood tests (many times), CAT Scans, PET Scans, and now I've had a core sample taken out of my pelvis.  I have an ultrasound tomorrow morning to check out a "suspicious spot" that showed up on the PET scan, but other than that, I'm ready for my trip to M.D. Anderson next week.
 


June 22, 2007
Doing some research

I finally feel comfortable enough with my diagnosis to actually start doing some research on follicular lymphoma.  What I've learned is that it is really a nasty disease.  (Boy, can I pick 'em.)  The real problem with follicular lymphoma is that it spreads easily, and it's tough to kill completely -- it almost always comes back.

There are some new treatments on the horizon, though.  Not commonly used now, but trials with these treatments have been somewhat encouraging.  Traditional treatments have involved lots of radiation and chemotherapy.  The new treatments are called "targeted" therapies because they are designed to find and treat the cancer cells without harming the healthy cells.

One that has been around for a few years is radioimmunotherapy (RIT) using monoclonal antibodies.  This involves injecting a radio-active substance that seeks out a specific protein that only exists on the surface of lymphoma cells.  This way, the radioactive substance is focused on the cancer cells, and it does not harm the other healthy cells in the body.

Another one that is quite encouraging is a patient-specific vaccine.  My new oncologist Dr. Kwak has been dedicating his career to the development of these cancer vaccines, and the clinical trial results look pretty good.  The vaccine helps the patient's body to recognize that the cancer cells are not healthy cells.  Once they are recognized as unhealthy cells, the patient's own natural immune system begins to seek out and kill the cancer cells.  This new drug, called BiovaxID, is still in clinical trials, but the company developing it just announced (just a few days ago) that they are expecting it to be cleared by the FDA next year.  Talk about timing.  I don't know if any of these treatments will actually help me, but it sure does give me a warm-fuzzy feeling to hear about the development of new approaches to cures.

Anyway, I'm still in the "gathering information" stage of the game.  We're still looking for evidence of cancer elsewhere in my body -- so far (knock on wood), things look pretty good.  My oncologist here in Austin did say that there is some hope for complete remission for patients who are "early stage I with resection followed by adjuvant treatment."

She sure talks pretty.

I don't know what "adjuvant treatment" is, but I suspect it will involve a certain amount of baldness.


June 28, 2007
Testing... Testing...

Greetings from M.D. Anderson.  I've had a couple of long days.  My mantra that I've repeated often throughout this whole experience is, "But I feel fine!"  I really don't feel sick -- I feel fine!  Well, today, I can honestly say, I feel like crap.

Modern medicine is truly miraculous.

Things started on the wrong foot when M.D. Anderson called me on Tuesday, and said they were moving my appointment forward 3 hours.  So, instead of leaving at 7:00 yesterday morning to take a leisurely drive over here, I had to leave at 4:45 and drive like a madman through the pre-dawn thunderstorms, and then sit in Houston rush-hour traffic for an hour.

I arrived yesterday and met with several doctors and lead nurses -- they contradicted each other quite a bit, so I didn't really learn very much.  Mostly what they agreed on was that a case like mine is quite rare.  It is rare to find lymphoma in Stage 1 -- 90% of people do not get diagnosed until the disease is quite advanced.  (Keep in mind, we're not positive that I'm Stage 1 -- they're still doing tests.)  It is also rare for people my age to have lymphoma.  So they don't really know what to do with me -- other than test the hell out of me.

When in doubt, order a bunch of tests -- that's the medical motto.

SO, I'm getting blood tests (12, count them, 12 vials of blood), urine tests, cardiac tests, another bone marrow biopsy, another CAT Scan, and an EKG.  I have been injected, inspected, and dejected.  And everything has been behind schedule -- everything.  I haven't been able to eat because I've been running from one appointment to another -- usually late -- not that it matters because they're usually late, too.

And "running" is not much of an exaggeration.  This complex is huge, so getting from my cardio image to the bone marrow aspiration was a 3/4-mile hike along the longest skyway I've ever been on.  This place has applied the efficiency of an assembly line to medicine -- each person here does one thing all day over and over and over.  I asked a couple of them how many procedures they do every day.  The woman giving me radio-active injections said she does about 200 injections a day, and about 30 of them are radio-active substances.  The guy who gave me the EKG does about 40 of those a day. 

The bone marrow aspiration surprised the hell out of me -- the one I had in Austin was CT-Guided, so the doctor could clearly see exactly where to take the sample.  The one here in Houston was done by the child of Hellen Keller and the Marquis de Sade.  I literally almost passed out from the pain.

So, I haven't eaten all day, my hip hurts like hell, and I'm a little tired of being treated like a product in an assembly line.  I've been hiking all over the place for two days, and I have another day of the same to look forward to.  And my doctors have already basically told me that they really don't know how they should treat me.

I'm a little down right now.

The only bright spot from this whole trip has been the incredibly warm treatment I've gotten from my friend Amy Thomas.  I can not tell you how wonderful she has been.  She has a cute little house in a very cool neighborhood near downtown.  And even though she is out of town this week, she just sent me the key and told me to make myself at home.  She has called to check up on me, and had her boyfriend drop by to make sure I was okay.  After a day like today, I can't tell you how nice it will be to go to a house and feel comfortable.  It's not my house, but it's the next best thing.  It is so much nicer than a sterile hotel.

Thank you Amy.  You are the best.



July 3, 2007
A Brief Reprieve

My trip back from Houston on Friday was a little sucky -- the air conditioner on my car went out just as I was leaving Houston, so I had no A/C for the mid-day drive back home.  It turns out that a new air conditioner for my car will cost $1,400.00!!!! 

Good grief, this summer just gets crappier and crappier.

All of this testing has taken it out of me, but I think I'm about done.  At least I hope so.  I have had every test you can imagine -- PET scans, CAT scans, blood tests, urine tests, cardiac tests, ultrasound tests -- you name it, it has been tested.  The results from a lot of those tests have not come back yet, so I still really don't know anything for sure. 

The PET scan did reveal a nodule on my thyroid gland, and when they did an ultrasound of the area, they found three nodules -- two on the right and one on the left.  Nodules on the thyroid are not that unusual -- many people have nodules on their thyroid (although it is more common in women), and most of them are completely benign. 

However, most tumors of the parotid gland are also completely benign.  Mine wasn't.

So, yesterday I went in for a needle biopsy of my thyroid.  The same doctor, Dr. Manning, who did such an amazingly painless job on my first bone-marrow biopsy did my thyroid biopsy.  So I got a chance to tell him that he is amazing.  He said there isn't any real trick to what he does -- he is just very experienced doing it so he has developed a feel for it.  He told me that M.D. Anderson is a teaching hospital, so it is likely that the person who did my bone-marrow biopsy there was just inexperienced.

Personally, I'm still inclined to think she was just a sadist.

Manning is a really young guy -- I would say he might be 40 years old.  But it turns out he is the chief of radiology at Seton, and when he left, the nurses told me that he is overly modest -- he really is an amazing doctor. 

Not surprisingly, with Manning at the helm, the needle biopsy of my thyroid went just fine.  They took two samples and sent them off to the pathologist for a "quick read," and he called down and said he wanted more cells, so they took three more samples.  It left me a little bruised and sore, but it wasn't bad.

(Which was fortunate because my car was in the shop, so I had to ride my bike to and from the hospital.)

Annie's mother Cecile was, again, wonderful.  She works at Seton, so she took a couple of hours to sit with me and make sure that everything went smoothly.  She is an angel -- everybody who knows her thinks so.

So, in theory, that was the last test I have to have done.  I'll meet with Dr. Bunch, my oncologist here in Austin, on July 9, and I'll go back to Houston to meet with Dr. Kwak on July 11.  I probably won't know anything until I meet with them.




July 12, 2007
Another fun-filled day at M.D. Anderson

Annie and I got back from our trip to Houston pretty late last night.  It was a very long day.  This was supposed to be the trip to (finally) meet with Dr. Kwak, and discover the results of all of this testing, and decide on a treatment plan.  We drove over in the morning, arrived half an hour early for my appointment, and then proceeded to wait for an hour and a half.  

Eventually, a shockingly abrasive and rude woman barged in and announced that the tests that had been  done here in Austin were worthless, and had to be repeated.  She scheduled me for more tests next Tuesday.  She really seemed to be angry with me for wasting her time.

M.D. Anderson -- we care about you.

She didn't ask me any questions -- ever.  She didn't talk to me.  She didn't ask if it would be okay to come back on Tuesday and have more tests done.  She just barked, and I was supposed to obey.  

Anyway, the interactions with this wonderful human being are not worth repeating here.  Suffice it to say, I could tell Annie was so angry over this woman's abrasive behavior, she was about to start yelling at people.  I think this woman got the same sense, so she retreated and sent in Dr. Kwak.

Finally.

Dr. Kwak turns out to be a very nice, gentle, and soft-spoken individual.  While his colleague, Miss Congeniality, was saying the tests that were done outside M.D. Anderson were "worthless" and a waste of time, Dr. Kwak explained that the tests were good, but not completely conclusive.  There was, in fact, only one test that he would like to have repeated -- a CAT scan that only takes about 15 minutes.  He said we could probably arrange the test late in the evening so I could come in for the test and get home again without totally disrupting my teaching schedule.

Dr. Kwak told us that all of the test results for so far suggest that I am in an early Stage 1 condition.  If that is true, then the prognosis is not too bad.  The standard-of-care treatment would be a 3 to 6 week daily administration of radiation to the area where the tumor was found.  That treatment could be done here in Austin (since it is a daily dose, of course it would have to be).

However, he said that staging the disease is extremely important for deciding on appropriate treatment, and without a more detailed CAT scan, he can not be completely confident that there are no other tumors.  If there is another tumor elsewhere in my body, he would like to find it early.  They did do a CAT scan of my neck when I was there last time, and he said there are a couple of "suspicious" lymph nodes, and a small mass near my surgery site in my neck.  It is unclear what those are, but the radiation should take care of them whatever they are.  His only concern is that it might have spread beyond my neck, and he wants another high-resolution CAT scan to rule out that possibility.

He was nice and reasonable and explained his concerns eloquently, so I agreed to go back and get another CAT scan.  I must say, though, I am more than just a little peeved that they didn't simply call me last week and tell me that I needed to get another CAT scan.  I probably could have arranged to have that done while I was in Houston yesterday to meet with Dr. Kwak.  That would have saved me about 7 hours of driving.  But that is not the M.D. Anderson way.  They are there to help you, and in return, you must give yourself over to them completely.

I cannot tell you how sorry I feel for the patients at M.D. Anderson who really are sick.

My experience with my oncologist here in Austin, on the other hand, has been quite pleasant.  If you ever have the good fortune to be afflicted with cancer, I heartily recommend the Southwest Regional Cancer Center.  I met with Dr. Bunch on Monday, and she said the results of the biopsy of my thyroid were not 100% conclusive, but she did not think the growth there was another lymphoma tumor.  She has requested further testing of the sample, and we will get those results soon.  Overall, she agrees that radiation is necessary and appropriate.

At this point, then, it looks like I need to arrange one more CAT Scan in Houston just to be confident that my lymphoma truly is in Stage 1.  I also need to start arranging daily radiation treatment here in Austin.  Dr. Kwak said the dose is about 60 seconds of radiation every day, so I need to work that into my daily schedule -- annoying, but I'll manage.  He also said that the radiation therapist may want to wait a few more weeks before beginning treatment, just to make sure that I have adequately healed from the surgery I had in June.

The radiation will have some side effects -- it's like a sunburn every day, only it is deep in the tissue.  Because of the location, it will also affect my mouth.  And the numbness in my ear caused by the surgery will probably never get better -- the radiation will keep the nerves from growing back.

But what I'm constantly aware of is just how much worse this could have been.  


July 16, 2007
Good Fortune Abounds

Who said that 7 was a lucky number?  Supposedly there was a huge spike in weddings two weekends ago because people wanted to get married on the luckiest day of the century -- 7-7-07.  Well, I must say, my uncanny Summer of 2007 luck continues unflagged -- a rock broke the windshield on my car the other day.  I would ignore it, but the cracks are wandering across the whole windshield, so I have to shell out more money to get my damn car fixed.

Such is life.  Well, my life anyway...

Cancer-wise, this week I'm meeting with my new radiation therapist here in Austin on Thursday to talk about treatment, and I'm going back to Houston on Friday for another CAT scan.  Hopefully that will fairly conclusively rule out any spread of the disease to other parts of my body.  Knock on wood.

Over the weekend, the New York Times ran a mildly scary story on the front page about follicular lymphoma.  Follicular lymphoma is on the rise -- the rate of lymphoma has doubled in my lifetime, and younger people are being afflicted.  There are new drugs being developed that really do seem to be quite effective in fighting lymphoma.  But they are not very profitable, so they may not be around when I need them.  Bexxar and Zevalin are bringing in millions of dollars in profit, but that's not enough.  The less-effective Rituxan brings in billions of dollars in profit, so there is little motivation to replace it with less profitable drugs.

I saw the movie "Sicko" last week, and I have to say, the idea of a profit-driven health-care system does seem pretty perverse when you think about it.  It's a little like the fire department showing up at your burning house and negotiating the price of putting out the fire.  Or simply telling you that they can't put out your fire because you do not have adequate insurance.

Actually, the scariest thing about that movie was the number of stories about people who had good insurance, but who were denied treatment because their insurance companies refused to pay for treatment.

Coincidentally, I received a letter from my insurance company the other day telling me I had 45 days to report all other medical insurance that I carry.  They wanted to know if I had Medicare, supplemental health insurance, vision insurance, even dental insurance.  They are clearly looking for any loophole to avoid paying for part or all of my medical bills.

That is sick.


July 20, 2007
Back at M.D. Anderson

I have to say, my affection for this place has waned quite a bit.  I'm currently sitting in a waiting room at M.D. Anderson, waiting for a CAT Scan.  I thought my appointment was at 12:30 (I thought that because that is what they told me), but it turns out I was mistaken.  When I spoke with Dr. Kwak last week, he said that he only wanted one more test -- a repeat of the CAT scan of my chest, abdomen, and pelvis.  The one I had before was not sufficiently high-resolution.  So, we agreed I'd just come back and have that scan repeated.

When I got here, though, I discovered that the plans had changed, and they simply forgot to tell me about it.  Dr. Kwak added several more tests to my agenda -- blood tests and a chest X-ray, and he decided he wanted a full body CAT Scan instead of just my torso.  Not a big deal, except they pushed back my appointment to 3:30.  And I could probably live with that, except that means that I won't get to eat today.  I was instructed to stop eating 4 hours before my test, which I thought was going to be at 12:30... And now, they aren't even scheduled to take me back for prep until 3:30.  Which means they would normally finish about 5:00.  

Except that today, one of the CAT Scan machines is broken.  They think they will be backed up by several hours.  It was standing room only in the waiting room for about an hour, but some seats have finally started to free up.  I just got a seat next to a morbidly obese man who is asleep and making rather humorous snoring noises.

Oh, and did I mention that, again without telling me, they scheduled me for more appointments in August?  I was, fortunately, looking at my M.D. Anderson account, and I saw that I have appointments on August 7th and 8th.  I've given up any hope that they would ever ask me for my input -- now I'd just like for them to tell me when they have scheduled appointments for me.

In the mean time, I've already started meeting with my new radiation therapist in Austin.  Dr. Kwak thought it was a good idea to go ahead and start treating the site with radiation, so I'm getting that process started.  Thursday, I'll be going in for -- you guessed it -- A CAT Scan!  Let's see, will that be my 4th or 5th CAT Scan this summer?  Anyway, it looks like I'll be getting a low dose of radiation on my neck every day for 20 days.   They do several shots from different angles to concentrate the radiation on the area where the tumor was without doing too much damage to healthy tissue.

At this point, I'm mostly hoping to get to a point where I know what treatment I'll be getting.  It would also be nice if medical professionals stopped changing my schedule and planning my life for me.

And as long as I'm dreaming, I'd also like a pony.

So here I will sit for the next few hours.  Starving.  Playing sudoku.

How did people survive at M.D. Anderson before the internet?


July 21, 2007
Fortune Continues to Smile Upon Me


Barium

Yum!  Doesn't this look appetizing?  Seriously, who gets paid to come up with marketing ideas for barium?  I love the little GI tract in the lower left.
Well, yesterday finally ended.  After I waited for about 4 hours, they made me drink a few gallons of "berry flavored" barium.  I was starving, so the first cup was somewhat welcome.  But just the first cup.  After a while, I began to feel like Dumbledore when Harry was forcing him to drink Voldemort's toxic potion. (I'm allowed to make Harry Potter references today -- it's Harry Potter day!!!).  Anyway, apparently I didn't drink enough to satisfy them because they started injecting me with more radio-active stuff, and then they inserted even more barium in a very naughty place.  And then I got a CAT Scan.  And then I got to drive home.  I thought at least I would miss rush hour in Houston, but apparently rush hour in Houston lasts for 12 hours.

Gazing out at the gridlocked Houston traffic through my recently broken windshield (yes, my sumer of good fortune is still going strong), I had a chance to rehearse my lucky song:

I am so lucky I caught this early;
And I'm so lucky I still feel healthy.
I am so very lucky I have good health insurance,

Because if I didn't, I'd be so boned.

I count my lucky stars I didn't get this 10 years ago,
Because treatments are getting better by the day.

And I am so lucky to have the time and money to deal with this,
And I'm really lucky to have so much support from my wonderful friends,

And if the worst thing I have to worry about is a long wait in a crowded waiting room
   and a tube up my butt, then life really isn't so bad.

In my head, Tori Amos is singing, and it's really kind of catchy.

Some people are not so lucky, and even though I've had a really crappy summer, I try to remind myself of that every day.

Oh, and speaking of luck, I lost my cell phone the other day.  And thus, I lost the numbers for about half of my friends because I am far too stupid to write these things down someplace where I won't lose them.

Just don't give me any grief, and please send me your phone number again.


August 1, 2007
Finally Getting Started

We are still waiting for the results of those CAT scans that were done at M.D. Anderson on July 20.  That place continues to surprise me with new forms of what I can only describe as incompetence.  Or perhaps it is indifference.  Who knows.  My doctor here in town tried to find out the results of the most recent CAT scans but was unable to penetrate the fog that is M.D. Anderson -- when he called and asked why it wasn't in the computer where he could download it, he was told that I never had a CAT scan on July 20.  The woman at M.D. Anderson said that the patient (me) must be "confused."  When my doctor here told me that, I told him that, no, I'm not confused.  They gave me a barium enema -- I didn't make that up.

I've also been trying to change my appointment there that is scheduled for next week.  They told me they'd have to check with my doctor, and they'll get back to me next week some time after Wednesday.  I reminded the kind lady that the appointment that I want to reschedule -- the one I'm asking about -- IS ON WEDNESDAY!  Good grief that place drives me to distraction.

Radiation Therapy 1The reason I want to change my appointment next week is that I finally got the go ahead to start radiation treatment.  The treatments are every day for 20 days.  Yes, for the record, my doctor at M.D. Anderson suggested that I go ahead and start this daily therapy, and then he proceeded to schedule me for a return visit next week so that I would have to interrupt this therapy.

I went in last week and got fitted for a "mask."  Basically, they warm up this plastic mesh material, and while it is warm, they stretch it over my face and bolt it to the table.  As it cools, it constricts and tightens and hardens around my face.  The result is a plastic mask that is custom fit to my face, and which, when properly bolted down, prevents me from moving at all.

This seems a bit medieval, but it turns out to be a good thing because moving while beams of radiation are being fired at my neck would be bad.  They are VERY precise in how they aim the beams of radiation, and they don't want to miss their target at all.  Radiation to the tumor -- good.  Radiation to the brain -- bad.  Still it's a little creepy -- I go in every morning at 7:00.  They bolt me down to the table, check the alignment of my mask with lasers aimed at little tape marks, double check the alignment with an x-ray, and then hit me with a couple of doses of radiation from two different angles.  The mask is very tight, and I can feel my heartbeat across my whole face while I'm bolted down.  Then after 15 minutes, they let me go, and I go home with funny hair and a comical waffle pattern on my nose.

Radiation Therapy 2So far, I don't have any side-effects.  The effects of radiation are cumulative, though, so the side-effects are coming.  It takes about a week or two for most people to have any issues with the radiation.  There will be swelling, irritation, maybe blistering -- it's basically a deep-tissue sunburn.  It will be sensitive to heat and sunlight.  I could temporarily lose hearing on that side, and the salivary glands on that side will stop working for a while, so I might have dry mouth.  I'll have to lose the beard, too.  The hair around my right jaw is going to start falling out soon -- but with any luck, the hair in my right ear will also fall out.  

Thanks, Lori, for reminding me that there's always a silver lining.



August 11, 2007
Side Effects May Vary

I've gone through 9 rounds of radiation so far, so I'm almost half way there.  I'm definitely getting all of the side effects that can go with radiation -- vertigo, nausea, soreness, and fatigue.  But it hasn't been too bad yet.  I suspect that pregnant women suffer from these symptoms more than I have been.  The soreness in the mouth and throat is the only really annoying part of this, and I find that a steady diet of beer soothes those symptoms nicely.  

I continue to wrangle with M.D. Anderson -- they wanted me to come for a visit on Tuesday and Wednesday this past week (remember, they just make appointments, they don't ASK the patient if those days are okay...), and I never was able to cancel those appointments.  I called, left messages, sent e-mails -- I tried everything, but they simply don't cancel appointments.  So they started calling me every couple of minutes on Tuesday, asking where I was.  First one person would call, then 10 minutes later, another person would call.  For each person that called, I would explain that I had cancelled that appointment, and they seemed perfectly fine with that answer -- "Oh, okay, no problem; nobody told us; sorry."  And then another person would call asking where I was, and we'd go through the same routine.

That's the best cancer hospital in the country folks.

Anyway, Dr. Kwak does want me to come back and visit him again, maybe in early October.  I'm not sure why, but it seems important to him.

I received the final test analysis from the full-body CAT scan they did on July 20.  Basically, they found a lot of suspicious stuff, but it is not clear if any of it is life-threatening.  Any time you do a full-body CAT scan, suspicious things will show up.  The spots on my thyroid showed up again (and we've already confirmed that they are benign), and they found some spots on my liver (could be cysts), and there was something in one of my bones that was deemed not worrisome, and there were a few lymph nodes in my abdomen that they thought should be watched carefully.  But mostly, the scan suggested that the area under my right jaw was the most worrisome area with a 1.5 cm mass and several enlarged lymph nodes.  And I'm already getting radiation treatment in that area, so there is not much else I can do at this point.

As I understand it, after I finish radiation treatment, they are going to do CAT scans every few months to see if anything is growing and changing.  I'll be watched intensively for 3 years, and periodically after that.  The lymphoma may never come back.  Or it may not come back for a long, long time.  We'll just have to wait and see.

I have to say, this has not been a particularly harrowing experience.  I didn't go through years of chemotherapy, and nobody started talking to me about getting my affairs in order.  I'm not your typical cancer patient.  I don't have any books to write on the subject or lessons to teach other people.  Except for one -- I am now the poster-child for early detection.  My only symptom of cancer was a small lump under my ear.  It is something that I easily might have ignored, but I didn't.  Because if we really did catch this in Stage 1, there is a chance that we isolated it and eliminated it completely.  But if I had ignored it, it would have spread, and there would be no real chance for a cure.



August 18, 2007
Thingth are jutht shwell


Okay, so daily doses of radiation are somewhat less fun than I thought they would be.  I was sort of hoping I might develop super powers, but that doesn't seem to be the direction things are going. 

I've been getting radiation every morning for 3 weeks.  I have one week to go.  I've been dizzy, nauseous, and tired, but those side-effects haven't been too bad.  My tongue is swollen, and I started developing some pretty awful soreness in my mouth and throat last week -- bad enough that I really can't talk well any more.  My tongue has turned white at times -- I'm told that's a yeast infection.  I also can't taste anything any more.  Actually, I get some rather mild and confusing sensations of taste.  I can't taste salty or sweet at all, but I get a hint of other flavors, usually on the back-left part of my tongue.  Some of the sensations of taste that I do get are quite bad.  Plain water simply tastes awful -- it tastes like somebody added baking soda to my water.  My mouth and throat hurt, and I can't really taste food, so eating has become a rather pointless chore.

I'm hoping I can finally lose that extra 20 pounds I've been carrying around.  If so, I'm planning to make millions writing a book promoting Dr. Wren's tasteless, bland, crappy food diet.

And, of course, I've lost a lot of hair.  I had to shave my beard this week, and it looks like the area behind my right ear is going bald, too.  And yes, the old-man hair in my right ear all fell out, too.  So I guess I can be thankful about that.

I was sad to shave the beard -- I've had that for over 6 years.  Annie started dating me right after I grew it, and she's never really known me without it.

Oh well.  Another fairly trivial loss.  A gentle reminder of how much worse things could have been.

Every morning, when I go in for radiation, I see a guy who is almost always there before me.  He's a friendly guy -- kind of a cowboy.  He tells me that he drives in every morning from Luling, which is about 60 miles away, closer to San Antonio than Austin.  He loves talking to people, and he's always upbeat and cheerful.  Mostly what he talks about is traffic -- traffic seems important to him.  I asked him the other day what he's been getting treatment for, and he told me he had pretty bad lung cancer.  He opened his shirt and showed me his chest, and it was pretty shocking.  He looked like a lobster.  He said he's been coming in every day since May -- 90 days.  At first, he was getting two doses a day.  The long-term side-effects from chest radiation are severe -- he will have trouble breathing for another year or more.  But he's just happy to be alive. 

I think I can live with a swollen tongue for a few more weeks.

I finished teaching my class at TSU, so I've been working every day at Jordan this week, getting ready for school to start.  Everybody there has been wonderful.  They come in, tell me they've been reading my blog (hi guys), and that they've been thinking about me and praying for me all summer.  It is very humbling.  So many people are worried about me, but I can't help but feel lucky to be as healthy as I am.  I see so many sick people every day now.  People who probably are not going to make it.  People who are beaten and demoralized.  People who have lobster skin.  And I feel completely and utterly unworthy of concern. 

Some day, I may take a turn for the worse, but for now, I talk funny, I hate food, and I have a very strange baldness pattern.  And in another week, I'll start getting better.




August 23, 2007
Antepenultimate Day of Treatment

I went in for my 18th dose of radiation this morning, and I'm only supposed to get 20, so I think that means that I am 90% done.  I gotta tell you, the end can not come soon enough for me. 

No wait, that doesn't sound right - I don't mean the end of my life, I mean the end of treatments.  

Anyway, I'm sunburned all the way through to my brain, I sometimes get so tired I can barely sit up right, and well, I'm just eager to get things back to normal.  Oh, and here's an odd thing, I don't have any ear wax in my right ear any more.  Now to be fair, before the treatments, I had just a little too much ear wax, so at first, I thought this was a good thing.  But dry, flaky ear canals, it turns out, are quite irritating.  Had I known how much I would miss ear wax, I would have saved up my ear wax and saved it in an ear-wax bank before the treatments so I could add it back.  This evening I will experiment with an ear-wax transplant from my left to my right ear.  

Wish me luck.  

On a bright note, I recently discovered that I can taste chocolate.  I don't know why, but chocolate tastes basically like chocolate.  Which is quite good, because everything else tastes like baking soda.  Even water tastes like baking soda.  Why baking soda?  It's a complete mystery.  I've never been a big fan of chocolate, but it's the only thing that tastes fairly normal, so suddenly I'm craving chocolate.  It even tastes sweet to me, which is weird because I can't taste sweetness any more.  Very strange.

Anyway, tomorrow is the penultimate day, and Monday is the ultimate day.  And then I get to start the wait and watch part of my cancer journey. 



August 30, 2007
Done – hopefully

I’m a bit of a wreck -- 20 days of radiation can definitely take its toll.  Other people go through 40 days or longer – I don’t know how they do it.  I'm not complaining, but the past few weeks have been quite difficult.  I still feel like I have an apple lodged in my throat.  I can’t sleep at night because I wake up coughing every 20 minutes.  And man, I am tired most of the time.

But my last treatment was Monday, and now I’m on the mend.  In about 10 days, the soreness in my mouth should get better.  The damage to my skin will be mostly gone in a few weeks.  And in a few months, I should start to get my taste and hair back.

By Christmas, I might be back in the same shape I was in before the doctors started curing me.

"All I want for Christmas is my old health back, my old health back... "

Of course, the lymphoma could come back.  In fact, odds are pretty good it will come back.  But for now, I plan to just enjoy my wonderful life, and appreciate everything I have.

A lot of people have written me in the past few months to share good wishes, and to let me know they are thinking of me.  I haven’t always been able to write them back -- I can only hope people understand.  I have greatly appreciated all of the kind thoughts and letters of support that have been shared with me this summer, and I really regret not being better about responding to every letter immediately.  Sometimes 2 or 3 days go by when I can not check e-mail, and by the time I do, I have 90 messages waiting for me (mostly spam).  Between my work, the neighborhood association, and friends writing, I sometimes just got overwhelmed.

Anyway, this is a blanket “thank you” that I want to send to everybody who has been so kind and supportive this summer.  Amy gave me a home, Sarah and Phyllis brought me food, Cecile watched after me in the hospital –- everyone has just been great.

Thank you all so much.


September 16, 2007
Back in the Saddle Again

I'm feeling better.  I still can't taste anything, I'm still missing hair, and there is still some tenderness, peeling, and swelling in the "affected areas."  But overall, I am definitely feeling much, much better.  My voice is almost normal, and my energy levels are back to normal.  I started going to the gym again last week, and that was just fine.

And, most importantly to me, I'm riding my bike again.  I've been going out for short rides -- mostly 20 miles or so.  But I feel fine, and I'm getting my strength back again. 

In fact, I feel so good, I've decided to ride in the Lance Armstrong "LiveStrong Challenge" ride this year.  I've ridden in the Lance Armstrong ride just about every year since it started 10 years ago.

I guess this year, I'll actually be allowed to wear one of those nifty "I'm a Survivor" labels.

The ride just happens to be on my 40th birthday (October 14), and I can't think of a way I'd rather celebrate the beginning of my 40s than to go for a bike ride with a few thousand other people who want to put an end to cancer.  How cool is that?

But the real bonus is that Annie has decided to come with me this year.  Now technically, Annie does not know how to ride a bicycle, and in the past, this has always limited her ability to join me on bike rides.  However, recently we have been riding a tandem bicycle together, and Annie thinks she can get in shape for a 45 mile ride through the hill country.  Yesterday, we drove the course, and it is indeed quite challenging.  (It's out near Dripping Springs for those of you who know the Austin area.)

Usually when I do the Lance Armstrong ride, I ride between 60 and 100 miles -- 75 miles is just about perfect for me.  Long enough to be challenging, but not so far as to be especially painful.  But this year, I will be very pleased to ride 45 miles on my 40th birthday with the woman I want to spend the next 40 years of my life with.

The Lance Armstrong Foundation, as I'm sure everybody knows, is helping with the efforts to find cures for different types of cancers.  As part of the ride, Annie and I will be raising money to help the LAF in their efforts to build political will and financial support for cancer research.

If you want to help Annie and me support the LAF and the work they do, you can visit my LAF donation site at:

http://austin07.livestrong.org/swren

Or Annie's donation site at:

http://austin07.livestrong.org/dervin

Each of us has pledged to raise at least $250.00 to support the LAF this year, and we would be grateful for your help in reaching, or even exceeding, that goal.



October 14, 2007
Feeling Great and Riding Hard

Happy birthday to me;
Happy birthday to me;

Etc., etc.
Annie and Me on the Tandem
Yes, I'm 40 years old today.  And yes, that is pretty damn old.  But I feel quite good.  In fact, Annie and I went out and rode the tandem almost 50 miles this morning in the Lance Armstrong LiveSTRONG Ride.  

Thanks to all of our friends, Annie and I raised $737.00 for the Lance Armstrong Foundation to benefit cancer research and survivorship. 

And we looked good doing it, if I do say so myself.  Annie complemented my zebra-striped outfit with a leopard-spot jersey of her own.  We turned heads with our outfits, but we really shocked people with our speed.  We were passing people right and left.  Well, mostly right, because you're supposed to pass on the left.  Anyway, you get my drift -- we rode fast.  We started about 8:00 and finished about noon with 3 rest stops to eat and refill water bottles.

She and I trained for today with rides almost every day for the past 5 weeks -- Annie has been a bit obsessed with riding.  Thirteen miles on weeknights and around thirty miles on the weekends.  So the actual ride today was really easy for us.  We both were saying at the end that we should have ridden the 65-mile route.  Next year, we surely will.

Anyway, for a guy with cancer, I'm certainly feeling pretty good these days.  And we saw a lot of other "survivors" out there today who looked great -- one guy had a shaved head, and a huge scar going from the top of his head down the back of his neck.  It's a nasty scar, but he looked great.  He has clearly been through a hell of a battle, but it's all behind him.

In the past few weeks, two of my friends from work have also been diagnosed with cancer.  Blanca was diagnosed about 4 weeks ago, and she started chemo last week.  Sally was diagnosed last week.  They both have a hard battle ahead of them, but I know they are both going to be fine.  I carried cards "In Honor Of" Sally and Blanca and another friend, Rowan, today -- Annie carried one in honor of me.  

Maybe next year, my friends can come out and ride as survivors just like I did this morning.



August 24, 2008
No News Has Been Good News

It has been almost a year since I have written anything in my cancer blog, mostly because there has been nothing to write.  The hair on the back of my head grew back, and I can almost grow a proper beard again.  I have been feeling fine, and my doctor has moved me from quarterly probes and scans to annual probes and scans.  She checks my blood once in a while and gives me a quick check up every 6 months, but from here on out, they are just going to "keep an eye" on me.

Annie and I got married in November, and we are now in the process of living happily ever after.  I taught Annie how to ride a bicycle in December (no, she never really knew -- that's why we've been riding the tandem), and we go for rides both on the tandem and on singles all the time now.  I've adjusted priorities in my life, spending more time on things that really matter to me, and less time on things that really don't.  Life continues, and almost every day, I can honestly say that I am consciously aware that life is good.

At every point in this process, I have felt fortunate.  It is a strange feeling -- I should have felt fortunate when I DIDN'T have cancer, but it's hard to appreciate good health until it is threatened.  Once I was diagnosed with cancer, and started going through the cancer-treatment mill, I understood just how bad things can be for people with cancer.  My treatments were mild in comparison.  Radiation, sores, loss of taste and appetite and hair and energy and ear wax -- that sounds bad, but it is really nothing compared to what a lot of people with cancer go through.

I regularly read articles now about different types of cancer treatments, and I know we are on the threshold of a new world of cancer treatment.  We have experimental treatments for certain types of cancer that have very few side-effects, and which are very, very effective.  They are still in the experimental phases, but they are so very promising.  Genetic treatments, targeted therapies, and patient-specific vaccines are a reality for a few cancer patients right now, and they will become the norm in just a few years.

With cancer, the disease is horrible, but the cure is often not much better.  In the past 30 years, the only real improvements have been in the treatment of the side-effects of radiation and chemotherapy.  However, I believe that I can say with some confidence that within my lifetime, we will be able to cure most forms of cancer with very few side-effects.  In fact it is quite possible that my lifetime will be extended because of these new treatments -- indolent follicular lymphoma is one of the first cancers to get this kind of breakthrough in treatment.  That is just one more way in which I am lucky -- if my cancer comes back, doctors may be able to cure it without disrupting my life.

I need to say one more time, this hope for cancer patients does not come quickly, and it does not come cheaply.  As a country, we absolutely must make cancer treatment research a national priority.  I have heard statistics claiming that the United States spends more in Iraq in one week than we spend on cancer research in a year.  That is obscene and embarrassing.  We really could cure cancer if we just made it a priority. 

I also need to say that I was incredibly lucky to be diagnosed early and to get such good treatment.  Approximately 60 million Americans do not have adequate health-care to get the kind of treatment I received.  Again, we are a rich country, but we are so appallingly stingy when it comes to providing basic services to our neighbors.

Things must change.

This is just a very small start, but I have supported the Lance Armstrong foundation for the past 10 years because of their contributions to research and their efforts to make cancer treatment a national priority.  Last year, as soon as I was able to get on a bike and train, Annie and I got out and prepared for the LiveStrong Ride.  Since then, we have continued riding, and we are in better shape than ever for this year's ride.

Please help us support the Lance Armstrong Foundation by contributing to the 2008 LiveStrong Ride.  Annie and I are giving $100, and pledging to raise an additional $500 for the Lance Armstrong Foundation this year.  Please help by making a donation at:

http://austin08.livestrong.org/swren

Or Annie's donation site at:

http://austin08.livestrong.org/dervin

Thank you.


And if I don't write anything more here for a while, please know that I am just doing what every cancer patient wants to do -- enjoying my life.