I went in to Pacific Oncology today for my twice yearly check-up. I don't recognize any of the people working there any more. I've been coming here so long that I'm starting to outlast the employees!

Dr. Karamlou reviewed the radiology report from my CT scan last week at St. Vincent's. Everything looked pretty good, except for a note at the bottom that said there is a small lesion on my hip that doesn't look cancerous but might be suspicious. The report recommended comparing the current scans with my previous scans to see how long it had been there.

This made me really mad. When I checked in for my scan, I specifically remembered giving St. Vincent's all of the info about my previous scans at Body Imaging. As part of the $2,000 they get for the scan and analysis, I would expect them to proactively obtain my previous scans and do the comparison. Dr. Karamlou said he would call them and ask them to do the comparison.

Otherwise, nothing out of the ordinary to report, except for some good news. After years of having depressed levels, my white blood cell count has finally returned to completely normal. I also mentioned that Dr. Doshi had gotten my cholesterol under control with pravastatin, which he seemed happy about.

UPDATE: Dr. Karamlou called and said that the radiologist compared my most recent scans with my previous scans. The suspicious lesion has been there for at least three years and is stable. Nothing to worry about!

I went in today for what hopefully will be my last CT scan ever.

Up until now, I've been getting my CT scans at Body Imaging Radiology. They're great and have always been really good to me. Unfortunately, my insurance company (Cigna) decided to drop Body Imaging as an in-network provider last year. Cigna wants people to go to their hospitals to get scans. Obviously this is having a negative effect on Body Imaging's business. Body Imaging is suing to get access restored... I hope they win!

In the interim, Body Imaging has agreed to write off any amount that Cigna won't cover. Not wanting to mess with the whole situation, I decided to give the Cigna preferred provider (St. Vincent's hospital) a try.

Unfortunately, the experience at the hospital wasn't as good. It wasn't bad per-se, but definitely not as nice as Body Imaging. The hospital uses a different (worse tasting) contrast. The facility is very poorly laid out requiring lots of winding through corridors. Parking is nasty. Overall institutional feel.

I also was supposed to get a chest x-ray at the same time as my CT scan, but St. Vincent's didn't have the order. I ended up having to schedule a special trip a few weeks later to get the chest x-ray.

But the biggest disappointment, which I wouldn't find out until my follow-up with Dr. Karamlou a week later, was their slacker radiologists! Full details in the next post...

I've been taking my cholesterol medication for a couple of months now. I went back in today to The Dosh's office to see how well it was working. The type of medication I'm on (called a statin) can also cause liver damage in some people, so they did a liver test as well.

My total cholesterol is now 165, LDL 95, HDL 52, and triglycerides 89. Those statins really do work as advertised! My liver test came back fine as well. Double woo hoo!

After starting on Crestor back in November, I did a little web research to learn more about it. I figured that if I was going to be taking this drug for the rest of my life, a little due diligence would be a good idea. After reading Is Crestor dangerous and, if so, why? and also Dangers of Statin Drugs, I asked The Dosh if I could switch to pravastatin instead (which she agreed to).

My reasoning was as follows:

First, Crestor is an unproven drug. Pravastatin (also known by its non-generic trade name, Pravachol) has been around for a very long time and has amassed a large collection of data on its safety and efficacy.

Second, Crestor is new and thus still patented. This means it costs a lot. My insurance company thus charges me more as well. For a 30-day supply, my copay was $20 for Crestor, versus about $4 for pravastatin.

Third, high cholesterol takes many years to affect your health. There is plenty of time to take it slowly and start off with drugs like pravastatin which, while less effective than Crestor for some people, are time proven.

Fourth, having read the book The Truth About the Drug Companies: How They Deceive Us and What to Do About It, I know that it is quite common for pharmaceutical companies to release a stronger version of a drug that is not really more effective than an older drug, but has some new aspect that makes it patentable. And, unfortunately, the FDA testing does not really protect the public from this practice. (If you haven't read this book, read it!)

In any event, the good news is that pravastatin worked just fine in lowering my cholesterol and my liver is fine.

I went to see my primary care physician, "The Dosh" (my nickname, her real name is Dr. Heena Doshi) on the advice from Dr. Karamlou that I get my cholesterol checked.

My total cholesterol came in at 231 (!), with an LDL of 149, HDL of 58, and triglycerides of 118. Not good.

The triglycerides and HDL are great, but the total cholesterol and LDL are abysmal. I asked The Dosh if I could lower my cholesterol without drugs by eating healthier, but she said I was too far gone.

She prescribed 5mg of Crestor daily. Crestor is the latest and greatest in cholesterol-lowering medications. We'll see how it goes!

I went in for my second "year four" check-up today. My physical exam and complete blood count were fine, so I spent a while talking with Dr. Karamlou about recent developments in treating Hodgkin's.

The trial I am part of (ECOG2496, ABVD vs. Stanford V) is now closed to new participants, but it still may be a while before any results are published. The study needs to collect a minimum number of data points in order to be statistically significant.

We also talked about the importance of keeping my cholesterol level as low as possible. I'm at increased risk for heart disease as a result of the radiation I received to my chest as well as the chemotherapy. When I had my cholesterol checked earlier this year, I scored 196 or so. That level's borderline normal for most people, but for my situation, it would be better to be closer to 150. Guess I need to cut back on the donuts, cheese, and bratwurst :-(

I also had a chest x-ray later in the week. Nobody called with any urgent news, so I'll assume no news is good news. All in all, a great checkup. I'm looking forward to my next one in March which will be my last CT scan assuming all continues to go well.

I'm in my fourth year since remission. This means that I only get CT scans once a year now and only have to get physical checkups twice a year. Woo hoo!

I had my most recent CT scan a couple of weeks ago (February 27th) and experienced the usual fears about the ever increasing amount of radiation I'm getting. Luckily I'm almost done: If all goes well, I should only ever have to have one more CT scan. Body Imaging has a new radiologist on their staff. He came out after the scan was done and peppered me with all sorts of specific questions which made it evident that he had done a thorough job of analyzing my scans.

When I met with Dr. Karamlou today, he said the CT scan results were perfect. My blood counts (white and red blood cells in particular) are also finally rebounding to their normal levels. Slightly depressed blood counts have been a minor side effect since I finished treatment.

All in all, everything's going great!

Saw Karamlou today for my periodic checkup. My latest round of CT scans from a month ago were all fine. Thyroid level is normal. Bloodwork is mostly normal. My white blood cell count is still lower than average, but more than adequate for fighting off infections.

Starting next year, I drop down to one CT scan a year and two checkups a year. While I will be a little sad to lose the "security blanket" that frequent CT scans provide, I won't miss the substantial levels of radiation (perhaps as much as atomic bomb survivors?!) that they generate!

Thankfully, no surprises. Still doing great. Radiology report and bloodwork both came back "normal".

Life feels pretty much back to normal and I am back to working and playing hard, as this 2005 in review letter show!

The only bad news is that my chest x-ray original films are missing, probably lost forever. They got misplaced amidst all of the shuffling back and forth between offices. Not that big a deal since CT scans are far more accurate, but it makes me mad that we're still using old school films. Medical offices are slowly "going digital", hopefully we won't have to worry about lost records in the near future!

Even though the title of this post is "year 1.75 checkup", today actually marks the end of my second year of checkups. I'm 40% of the way through my "first 5 years". I had 6 checkups in my first year, 4 checkups in the second year, and will have 4 more in the coming third year.

I went in for my 9th checkup since the end of treatment this week. I did my scheduled CT scan last week so that the results would be ready in time for my visit.

The CT scan place (Body Imaging) called me a few days after the scan, said their courier was too busy to take my films over to Karamlou's office, and if I wanted the films there in time for my appointment I would have to pick them up myself -- slackers! After picking up the films, I noticed that they had put a CD of my most recent 3 CT scans in the envelope. I immediately made a copy for myself, of course, and was pleasantly surprised when I popped it into my computer and it came with the necessary software to view the data. I spent the next hour or so examining the slices of my body and marvelling at it all. The bronchial tubes in particular were very interesting.

I also read the radiology report included with the films. For the first time, the report came right out and said that no active cancer was detected. Previous reports had all stopped just short of that absolute statement, preferring instead more conservative, lawyer-approved language ("...can't rule out...", "...may still be...", etc). Woo hoo!

With this prior knowledge, I wasn't expecting too many surprises from the actual visit with Karamlou. Except that it didn't end up being with Karamlou -- Oregon Hematology has a new doctor at that office, Anupama Kurup, and I saw her instead. To be honest, I didn't appreciate the bait and switch (this visit is costing $200, I wanna see the doctor I signed up for!), but I realize that the medical system depends on this sort of thing to train new doctors. And she did a fine job. But I was thankful that Karamlou grabbed me in the hallway on the way out for a quick hello.

This was my first visit to the office where my chemo nurse, Nancy, was gone. She accepted a job working with Carol over in clinical trials. So I was sad that I didn't get to see her, but happy for her that she will be doing new and exciting things.

Went in for my year 1.25 checkup today with Karamlou, my 8th check-up since being cured. No problems to report. I am now officially in year two of my five-year check-up schedule. (Year 1 had check-ups every 2 months. Years 2 and 3 have check-ups every 3 months. And Years 4 and 5 have check-ups every 6 months. Then once a year after that for the rest of my life.)

As I'm writing this entry, I realize I never wrote about my one-year check-up back in March. Obviously everything was fine then, too. It's amazing how much things have returned back to normal in just a year: Unimportant quotidian concerns are already creeping back into my life, taking an increasingly larger share of my time and thoughts. Luckily, spring and summer are here at last and the explosion of life and activity is a good reminder to enjoy being alive.

Yet, despite the warm weather and long sunny days, the dark hand of cancer has me feeling a little melancholy: My neighbor had a recurrence of lung cancer that has spread to his brain (prognosis is not good). Another neighbor just found out that he has bladder cancer. (My condo building appears to be an unlucky place to live!) A friend at work found out that his colon cancer has come back and spread to his liver after 3 years of being in remission. A girl I knew from my young adult cancer survivor support group died of bone cancer. And two other Hodgkin's patients that I "met" on the Internet died recently as well. (One of them lived in Portland, and we exchanged some e-mails, but never met in person.)

In just a couple of weeks, my mom will be bicycling across America to raise money for cancer research and awareness!

As many people know, I bicycled 3400 miles across the USA in late 2003 and discovered just weeks after finishing that I had cancer.

My mom

If you are interested in tracking her progress, she has set up her own blog, which she will be updating from the road once she starts her trip. She also wrote a nice fundraising letter (PDF) describing her trip (and including a mini map of our route), and you can also check out her daily itinerary if you are interested in the details.

She is also raising money on behalf of the Lance Armstrong Foundation (which, as you may know, is a cancer charity). If you are interested in making a donation, it would definitely help motivate her in her journey, and would be appreciated by cancer patients and survivors everywhere (myself included). Note that 100% of your donation goes directly to LAF. Her trip is entirely self-funded.

My first official cancer check-up of the new year and all is well and good! I did come down with a nasty cold that lingered around for a while, leading me to believe that my immune system is still not 100%. Or maybe the colds are just bad this year for everyone.

My next check-up in March will be the big 1-year check up.

No news is good news!

Almost exactly one year ago, I had just finished my first chemotherapy session. Sitting here now, healthy and happy, it's hard to believe that this whole thing even happened!

As far as my health goes, the only new news is that my L'Hermitte's Sign has gone away! It disappeared as suddenly as it appeared: I was in Italy on vacation a few weeks ago when I noticed that it was no longer happening.

I finally got around to tabulating up the final treatment cost: $77,633. See the cost breakdown page for details on where the money went, as well as the winner of the "guess how much it's going to cost" contest. It really surprised me at how cheap treatment ended up being.

Lastly, while I was cleaning out some computer folders, I found some haiku that Aimee and I wrote while I was going through treatment. We both think that we are the superior haiku writer. Please send me your vote for your favorite haiku so that we can settle our dispute once and for all :-)

Leaves fall, chemo drips
Sickness always follows; yet
The end brings rebirth

---

Drip, drip, drip. I watch
Bags of poisons slowly drop.
Presto will soon nap.

---

Discrimination
Is when you have cancer and
no one will massage.

---

It's like old growth woods
That is, Preston's hair. Strong. Tough.
Nurse Carol amazed

---

Men don't like lotion
Preston is no exception
Redneck, he became

---

Weeks after chemo
Weeks after radiation
Preston starts dancing

I had my six-month CT scan a couple of weeks ago. It was a significant milestone since it's the first scan since I finished treatment, and the highest chance of relapse happens in the first year.

Today, I met with Dr. Karamlou, went over the CT scan results, and did the usual checkup per trial protocol.

Bottom line: The scan results look great! They aren't completely clear (and probably never will be) due to residual scar tissue, but this is consistent and expected for persons having had treatment for lymphoma. What's important is that there appears to be no active growth and all of the previous tumor sites are the same size or smaller than they were before.

I wanted to give a special "thank you!" to the people who noticed/remembered it was my 6-month treatment anniversary and called or e-mailed. It really meant a lot to hear from you.

Now that I am out and about in normal life again, it's amazing how many people I run into who say something to the effect of, "I heard about your cancer struggle, how are you doing, I've been thinking about you, etc." It's nice that people were thinking of me, but it would have been even better to have heard from them while I was going through treatment and needed the support the most. A simple phone call or (perhaps less awkward for some) e-mail is all it would have taken, less than one minute's effort. Ah well. [Update: Some people have asked me about this, commenting that I seem angry, so I want to add: I am NOT upset about this. Just remarking upon a phenomenon.]

Having grown accustomed to the clean look and low maintenance of short hair, I have wanted to cut my hair for some time now. But I have resisted before today because I wanted to see if the chemotherapy had altered the color or texture of my hair at all (as it is known to do).

I finally broke down today and shortened my hair down to about 1/2", but not before snapping a quick "status update" photo. It's hard to tell from the pictures, but my hair has definitely gotten darker, although it isn't any more curly or any less soft than it used to be. Only time will tell if it will ever return to its previous color, either from sun bleaching or as the chemo effects gradually wear off.

I've had several journal entries sitting around for a while, and I finally got around to posting them. The next three are all new, even though they are backdated for when they occurred.

I received a letter from the medical appeal committee today -- I won my appeal to have the dental trays covered! A victory like this may seem like a small matter, but when you have been dealing with the medical insurance companies for as long as I have, it is quite delicious indeed when you win.

Although fluoride treatments are not normally covered by my medical plan, the reviewer noted correctly that, in my case, they were used to prevent major dental problems that sometimes arise after radiation treatment, including tooth decay and, in some horrible cases, the removal of the entire jaw.

I think this means that the medical plan at my company will be updated to include this as a covered service, so anybody else who finds themselves in a similar situation in the future won't have to go through an appeal.

Yesterday, I was washing my hands in the bathroom at work when I noticed that my teeth had this putty-like brown coating on them. The discoloring was mostly on the areas near the gums, but the fronts of many of the teeth were affected as well. I immediately freaked out, grabbed a toothbrush from my desk, and tried to brush it off with no apparent success.

I called my dentist and was able to move up my next dental cleaning to today, which was quite a relief. After a vigorous cleaning, including a significant amount of scraping with metal dental toolery, my teeth have now been returned to a state of semi-whiteness.

It turns out the staining was caused from the daily fluoride treatments that I have been giving myself to protect my teeth during and after radiation treatment. There are multiple types of fluoride available, but the cheapest and most common one (called "stannous fluoride", which coincidentally looks a lot like "stainous fluoride") causes the staining problem that happened to me.

Both my dentist and dental hygienist said that my teeth were looking great and that my saliva product was good. In light of this, I'm going to stop using the fluoride trays. They were a pain in the butt anyway.

I went in for my four month check-up today. No news is good news!

The only real symptom I still have is the L'Hermitte's syndrome. Also, I never really seem to get a good night's sleep, but I suppose that particular problem afflicts millions of people.

The tiny bald patch at the top of my neck has finally started growing hair. This makes my hair recovery complete. Indeed, I would have to say that the hair recovery is too complete! In addition to having hair return in the normal ape-like places (side of hands, ears, nose), the bottom half of my jaw is growing hair about twice as dense as the rest of my face. This area was inside the radiation zone and was previously as hairless as could be. I'm hoping it returns to normal as it makes for a strange sight if I let my beard grow for a few days...

I saw my primary care physician today. Diagnosis confirmed: I have shingles.

If you don't know what shingles is, it's basically chickenpox that is able to break out again because the immune system is too weak to contain it (like all herpes viruses, chickenpox never goes away, it just lies dormant inside the body's nervous system waiting patiently to strike if the opportunity arises).

A weakened immune system often coincides with a period of great stess. The doctor asked me if I had changed anything in my life recently. I mentioned with a chuckle that I had gone back to work after being on disability for 6 months.

He said that I need to really take it easy for a while and prescribed a 10-day supply of Valtrex to help get rid of the shingles.

The story of getting in to see the doctor is a great example of one of the few benefits of having had cancer, as illustrated in my phone conversation with the office:

ME: Hi there... I have a weird rash on my chest and I think it might be shingles. Do you think I should see one of the doctors?

RECEPTIONIST: Yes, let me see when I can schedule you in. We're pretty busy until next week...

ME: Oh, I forgot to mention: I just got done with treatment for Hodgkin's disease... you know, chemotherapy, radiation. I'm not sure if that affects anything, but I thought I should mention it.

RECEPTIONIST: [Pause] Err... yeah, let me transfer you to the nurse.

[Short delay]

NURSE: Nurse So-and-so here.

ME: [Basically repeat what I already told the receptionist.]

NURSE: Oh, we definitely need to get you in here sometime today... umm, how does 11:20 look? [It was 9:00 when I made the call :-)]

Today was also my 3-month treatment anniversary.

I discovered a weird rash on my chest today. After digging around on the Internet a bit, Aimee and I are pretty sure it's shingles, which is common in Hodgkin's patients after treatment. One last parting gift from my bout with HD it would seem...

Tonight I attended a free seminar hosted by the Leukemia & Lymphoma society on health insurance rights for cancer survivors.

The most interesting thing I learned about was OMIP, the Oregon Medical Insurance Pool.

OMIP is insurance of last resort, meaning that it is guaranteed medical coverage for all Oregonians. Oregon is one of only a dozen or so states that has a program like this, and I definitely sleep easier knowing it's there.

It is not free health care. The premiums are actually fairly steep, but if no other insurance company will cover you, you won't be complaining! Cancer patients that have been denied coverage from private insurance companies comprise the bulk of OMIP's membership.

According to the presenter, OMIP is not supported by any tax dollars, it has approximately 10,000 members right now, and the most expensive condition (on average) for all OMIP members is cancer.

We had started to make big plans for Memorial Day weekend (long weekend in Seattle, trip to Oregon coast, etc.), but as the weekend drew near, we decided just to enjoy a lazy weekend around town.

In addition to a birthday party and a few BBQ's, Aimee, Beeman, and I climbed Dog Mountain, which is a substantial hike at 3,000 feet elevation gain and 7 miles round-trip to the summit.

I was huffing quite a bit and my heart was redlined the whole way, but I made it up without incident in about 2 hours.

See the rest of the Dog Mountain hike pictures or watch the three short video clips: one, two, three (videos require Quicktime to play properly).

I was sitting down this weekend and noticed a slight vibrating sensation that felt like it was coming from my chair. At first, I thought it was something in the building, but I eventually figured out that it was...

L'Hermitte's Sign!

Pronounced LUR-mets (I think), this is a condition where flexing your neck by looking down causes an electric shock-like sensation that extends down the spine (and sometimes into the limbs). It can be caused by many things, including multiple sclerosis, but in my case, it was caused by radiation treatment. Apparently the radiation treatments damage the myelin sheath surrounding the spinal cord and this causes the vibrating sensations. They typically show up several months after the radiation treatment and go away on their own after 6-12 months.

According to a study published in 1993, it occurred in 4 percent of patients who received >3000 cGy to at least 2cm of their spinal cord. Pretty rare, but it appears that I have it.

It's not really painful, just strange. An interesting thing about the shocks is that they are not continuous. After I look down and get the brief shock (which lasts a second or two), the sensation goes away completely. Looking down after the shock has been "used up" doesn't cause any further sensations until my spine "charges up" again (usually takes a few minutes). It also doesn't happen when I am lying down.

Other big developments this week:

I achieved my target weight of 150 pounds after a little dieting. The nurses at the radiation clinic chewed me out a bit for losing weight, but I'm going to maintain this weight until I lose the jelly belly that I've accumulated over the last 8 months of inactivity and then reassess what my ideal weight should be. (Incidentally, nothing else of interest happened at my radiation follow-up visit with Dr. Nautiyal last week.)

I also went mountain biking for the first time since starting treatment. It was pretty exhilarating but terrifying as well since I haven't ridden off-road in such a long time and I've kind of lost my mountain biking legs. I didn't break any speed records and was somewhat timid, but it felt great to be out shredding it up on the trails again!

I finally returned to work this week after about six months off. It was really great to be working again, mainly because it means I'm healthy enough to return to normal life! Also, it feels good to be a productive member of society once more. And, of course, it was really good to see all of the friendly faces at work.

On the downside, it has been difficult getting used to the long work days after so long at home: The commute, meetings, running around the building, keeping my mind fully engaged all day... it all takes its toll. I find that I have enough energy to get through a day of work, but I'm so tired when I get home that I can't do anything but watch TV. This is a stark contrast to my usual summer routine of cramming in every possible activity in the incredibly long daylight hours of the northwest. For the time being, it seems that I have enough energy for either work or staying at home and doing an activity, but not both.

Today was also my two-month end-of-treatment anniversary. The whole thing is starting to feel like just a bad memory.

Symptoms update:

• Neuropathy: Fingers back to normal, all tingling gone!
• Hair: Most hair back to normal, although the radiation zone is still bare. My head hair in particular is growing in nice and thick. Still no indication yet on whether it has changed texture or color.
• Tinnitus: Slight ringing sound still present in my ears when it's very quiet (usually only at night right before falling asleep)
• Skin: Radiation burns are mostly faded, although my skin has become extremely sensitive recently. I think this is caused by all of the tiny skin hairs growing in, as well as cell regeneration.
• Itching: Gone.

My only real worry right now is that my teeth/saliva production will continue to be ok; I'm anxiously awaiting my next dentist visit. My throat is also very sensitive to spicy foods and I am prone to getting acid reflux problems (heart burn) if I'm not careful of what I eat. And, of course, in the back of my mind, I'm curious to see what becomes of my thyroid down the road.

The PET results are back: All clear!

I still need to confirm with the doc, but I believe this means I am officially either a complete responder (CR) or a clinical complete responder (CCR). Either way, cured!

I had my PET scan at EPIC (East Portland Imaging Center) today. It was the most high-tech diagnostic procedure that I've received to-date and also one of the easiest.

I started out by signing two separate disclaimer forms promising to pay if the insurance doesn't come through. At $4,000 a pop, they seem a little nervous about people trying to run out on the bill.

Then the technician took me into a cozy room with a La-Z-Boy and injected me intravenously with the radioactive sugar solution (FDG - 18-fluorodeoxyglucose). I was expecting a large IV infusion, but the FDG came in a small syringe encased in metal shielding to minimize radiation exposure. The injection was quite cold but was over in a second or two. I reclined back in the La-Z-Boy and relaxed for 45 minutes so that the FDG could do its job. (Apparently the FDG injection alone costs $1000, making it my most expensive single injection to-date.)

I was then escorted across the hall to the PET/CT machine, which looked exactly the same as a CT machine to me: A mechanized gurney that slides back and forth through a big white plastic donut.

I whizzed once through the machine pretty quickly (CT scan) and then did it again much more slowly (PET scan). If I recall correctly, the scan was broken up into three separate parts, each of which took 10-15 minutes. I had originally worried about having to stay still for such a long time, but it didn't turn out to be a problem. I had brought some Ativan with me and taken a dose before the FDG injection to help me relax, so it was quite easy to let my mind drift in the dim room. At one point, I fell asleep and my hands, positioned above my head on a pillow, started to slip off.

It didn't seem like very long at all before the technician came back in and told me I was all done. She gave me some hot chocolate and a nutrigrain bar (I had been fasting and was pretty hungry) while I waited in the lobby. They like to verify that the scan was done correctly before letting you leave the office.

They said the results would be sent to my doctor within two days. Unlike the early days, when I was always super anxious to get my scan results, I am surprisingly calm and don't mind the delay.

I was supposed to get my PET scan today, but I delayed it until next week because my cold turned out to be much, much worse than I had anticipated. I am only now starting to feel normal again. I'm not sure if the cold would have affected the scan at all, but since it measures metabolic activity, I didn't want to take any chances. Plus, you are supposed to lie still for up to 45 minutes, which I knew would be impossible if I were coughing every minute.

I had originally thought that I was having a hard time with the cold because my body was still recovering from everything that I've been through. I've since heard from many people that the current cold going around is particularly virulent, so maybe it was just a really nasty cold. Either way, I'm glad to be on the downhill side of this one!

It's been one month since my last radiation treatment. I would be celebrating, but I managed to pick up a cold somewhere during the last few days. Blecky. My last cold was way back in October, before being diagnosed, so I was overdue for one. It still doesn't make it any fun.

I must confess that I was a little excited about getting a cold since I wanted to compare it to going through chemotherapy. That excitement lasted about 2 minutes. Now I know that having a cold is way easier than going through chemo. And I'm ready for the cold to go away now :-)

The radiation burn on my neck has finally stopped hurting. The lumpy feeling in my throat is still there. My facial hair still looks freakish from where the radiation made it stop growing.

I called Dr. Karamlou and got the CT results: All tumors are gone except for the original large mass (7.5cm) in my chest, which has shrunk to 1.0cm. While the best news would be that all the tumors were gone completely, residual mediastinal mass is very common in HD patients. Often, if the original tumor is quite large, there will be permanent, benign scar-tissue that doesn't go away.

I guess this means I am in remission... almost! ;-)

For my peace of mind and to make sure that I am cured, Dr. Karamlou is going to schedule a PET scan for me in about 3 weeks. This site has a cool 3D PET scan image as well as some interesting case studies.

According to this "Blood" journal article, PET scans have excellent negative prognostic value:

However, in up to 64% of all HD cases, computed tomography (CT) or magnetic resonance imaging (MRI) show remaining tumor masses after completed treatment,3 although only a few of these patients will eventually relapse.4,5 These masses may represent fibrotic tissue or even an active Hodgkin tumor, but discrimination by CT is usually not possible.5 If the tumor is easily accessible, as an enlarged inguinal lymph node, the questionable lesion can be excised and histologically analyzed, whereas a mediastinal tumor can only be accessed by mediastinoscopy or open thoracic surgery. Mediastinoscopy is associated with a mortality risk of up to 0.5%6 and a high failure rate for a pathological diagnosis because of the relatively small amount of tissue that can be gained. Open thoracic surgery is an invasive procedure and thus not desirable for a potentially cured patient. Therefore, posttreatment mediastinal residues usually require follow-up CT scans at short time intervals. A delay in the diagnosis of progression or early relapse may result from this strategy and could mean a loss of precious time for salvage therapy.

[...]

The results of this trial clearly indicate that patients with a negative FDG PET result are unlikely to progress or relapse within a year or longer after therapy. The chance for remaining in remission in the first year after therapy is about 95%.

Went to Body Imaging for my post-treatment CT scan today. Got to drink more of the yummy barium contrast and also got three more intravenous injections of the drug that makes my spine feel warm.

Things went pretty much as expected (I am an old pro at the CT scan now). Took about an hour for a chest x-ray and three CT scans (neck, chest, and abdomen/pelvis).

Unfortunately, the earliest I will get the results will be tomorrow. Let the waiting begin... I plan on taking 0.5mg Ativan to ensure a restful night's sleep and to keep the nightmares at bay. (I already took 1mg of Ativan last night to suppress any pre-scan jitters. Worked perfectly.)

EOT+3 weeks and counting. Recovery still going well. I am sleeping much better and not taking as many naps, although I do have frequent and disturbing nightmares many nights. Two recent nightmares include one in which all of my teeth were coming loose and had to be extracted, and another in which I thought that there was something in my bed trying to get me (bug or snake, something along those lines). In the latter example, I freaked out and screamed, jumped out of bed, flicked on the lights... and finally realized that it was just a dream.

I've been biking up to Council Crest like a mad dog (4 times this week). My ascent time stands at 28m 08s right now. If memory serves, my best pre-diagnosis time was 20m 00s, so I have my work cut out for me. On my most recent ride, a dad and a little kid on a tandem blasted past me. It was very humbling. But at least I'm back out there!

My neck sunburn is finally beginning to ease up. A troubling new development is a funny tickle in my throat. My panicky side thinks that it's a mediastinal tumor growing again and pushing up against my trachea/esophagus. My reasoning side thinks that it's just another radiation side effect. Luckily I have a CT scan coming up in a few days.

I finally got around to making this tribute to my shaved head. Two games are available: "Where's Presto?" and "Identify the heads". How well can you do? :-)

Symptoms update: The itching has finally started to subside; hopefully this means that it was a side effect of the Oxycodone. The skin on my neck is still somewhat sore. I'm applying the aloe plentifully. I also started to lose my voice earlier in the week, but it wasn't painful and it's already started coming back.

Today Aimee and I bicycled to Council Crest (highest point in Portland) which is about 5 miles and 800 feet of elevation gain from my condo. I surprised myself by being able to make it without stopping since this is not an insignificant hill.

Council Crest holds a special significance to me since I have probably done it more than any other ride, and it was one of my training routes in preparation for the Ride Across America. In addition to getting me in shape, Council Crest helped me in my cross-country trip in another way: When faced with a large obstacle, Eric and I would convert it into more appealing "Council Crests": Instead of a 3000-foot elevation gain, we would say, "that's only 4 Council Crests!"

I attended a young adult cancer survivors support group last night. Now that I'm leaving the safety blanket of treatment, I figured I should at least try out some of the support group options available.

The meeting was pretty informal, mostly just people getting together and talking about anything and everything -- although, invariably, all roads led to cancer eventually. It was nice to have some fellow young people (defined as under 35 years old in the cancer community) since every other cancer-related activity I've been to seems dominated by the elderly.

There was a guy who had leukemia and a bone marrow transplant, a woman who also had leukemia and a BMT, a woman with a brain tumor, another woman currently being treated for breast cancer, a woman who had some sort of neck cancer, and me.

It was a good experience. I plan on heading back a few more times to give it an earnest chance.

I had my post-radiation follow-up visit with Dr. Karamlou today. We really won't know the answer to the big question (whether I am cured or not) until I get another set of CT scans, so we spent most of our time going through a long list of questions I've been compiling over the last month.

The short summary is that I can return to life as normal: Start taking vitamins and "lifestyle prescriptions" (Flonase, Allegra) again, eat all the sushi I want, exercise as hard as I want, etc. He thinks I should wait until May before heading back to work.

As for long-term side effects from my treatment: We'll check my thyroid level in 6-12 months to see if I will need to take synthetic thyroid replacement. My heart and lungs are probably ok if I haven't experienced any problems yet. My bone density was probably weakened by the prednisone, so I should start taking calcium and vitamin D supplements to counteract. As for infertility: Apparently there's no way to tell if the treatment damaged any reproductive organs. Looks like I'll be shelling out the $120/year cro-preservation maintenance fee down at the sperm bank :-(

Since I'm leaving the safety net of weekly office visits, I was worried about what I should do with any nagging little questions that come up in between my bimonthly office visits. Dr. Karamlou gave me his e-mail address so I can send him any quick questions that I might have. I thought that was pretty cool -- the way things should be done!

I did my inaugural post-treatment bike ride today, the first time I've ridden since my diagnosis back in October. Aimee and Brian accompanied me for a leisurely ride down on the waterfront (about 8 miles total). The sun was out, the weather was nice, and it felt good to be back on the bike. I actually felt suprisingly good, but I forced myself to take things slowly and not overexert myself. The only time I allowed myself to "go for it" was on the return trip when I biked up the super-steep road to my condo.

I've been doing a little bedtime reading. The Journal of Clinical Oncology has a good article on The Optimal Treatment for Hodgkin's Disease. And there is an outstanding overview article about Hodgkin's disease from the Well Connected Health Series (PDF).

One week treatment anniversary today!

My throat is feeling much better. It is still a little sore, but at least I can swallow now without the food torturing me on its journey down my esophagus.

My neck is still pretty sunburned. I constant apply aloe vera, which provides a temporary relief, but my skin has an insatiable appetite and just sucks it down.

I have been off of the oxycodone for several days now. I am still moderately itchy, but I am hopeful that it was a narcotic side effect and that the itching will stop in a day or two.

My energy level is continuing on its way up. I went to the zoo today with Andrew and walked about 3.6 miles total, my biggest exercise day to-date.

Aimee commented the other day that my head finally doesn't have the shaved look any more. My moustache area is growing at a healthy clip too, but the rest of my facial hair is still a little sluggish (as is the hair on the rest of my body).

I just updated my medical costs if you have been following along (see right hand side bar).

My first day without treatment; the first day of the rest of my life!

Throat still hurts. Skin still sunburned. Starting to lose my voice. Slept in until 12:30!

Now that treatment is over, I'm going to scale back the daily photos to once per week. It was starting to become a chore anyway.

Today brought my final radiation treatment... and the end of my treatment! People have been asking me if I am planning a big party to celebrate, but in reality I am too exhausted to do much celebrating. I am just glad to be done. I plan on celebrating in a week or two when I can enjoy it.

The technicians and nurses all congratulated me on being done and reminded me to stop by the treatment room and say "hi" when I come back for check-ups. I said farewell to all of my radiation buddies in the waiting room as well. We all started to say, "see you later," but ended up with "it's been nice knowing you, but let's hope we never have to meet under these circumstances again!"

One guy in the waiting room was jealous that I was done, saying that he had four more weeks to go. But the time truly has flown by very quickly and I told him that he would be done before he knew it. The daily appointments were somewhat relentless, back-to-back with only the weekends off (just like a full-time job!), but one benefit of such frequent treatments is that it's all over quickly.

Dr. Nautiyal was out of the office for my final office visit, but he called me last night and wished me good luck, said it's been a pleasure treating me, etc. Yet another example of his considerate nature.

I went home and promptly fell into a deep slumber for three hours. I am certainly glad that the treatments are over -- I don't think that my body could have taken much more of this. My skin is totally sunburned, my throat is sore, and the itch from the oxycodone is wearing me down.

Unfortunately, even though my mind thinks I'm done, my body hasn't gotten the news. The sore throat and sunburn won't be gone for a few weeks (indeed, they may get worse before they get better), and it may be months before the fatigue goes away.

I was surprised at how few people congratulated me on being done. Don't worry, I'm not feeling sorry for myself or anything, but this is such a big milestone in my mind that I was sort of expecting the phone to be ringing off the hook. I hear from other cancer survivors that this is the norm, however, especially on subsequent check-ups (6 month, 1-year, 5-year, etc.), which are huge anniversaries to cancer survivors but are hard for friends and family to remember or realize the significance.

Dr. Karamlou says that the oxycodone is the culprit behind my itching. He seems very confident that it is not a relapse of Hodgkin's disease. I am going to discontinue using it tonight and we'll see if the itching goes away.

I had a huge list of questions queued up to ask him, but since we are meeting again in a week and a half, I decided to postpone asking them. He did ask me when I was planning on returning to work. I said 2 weeks after treatment ends, to which he said, "No, no no... you need at least 4 weeks to recover. You can try going back sooner, but you'll be exhausted."

So it looks like I'll be heading back to work around the second week of April.

The hair on my neck and in the middle of my chest has fallen out as a result of the radiation treatments. Between the missing hair and the red skin, it's easy to see exactly which parts of my body are getting zapped.

My throat is still feeling fine, I'm still sleeping a ton, and my skin still itches all over. I'm meeting with Dr. Karamlou tomorrow to discuss the itch.

Otherwise, only 3 treatments left until I'm done with treatment forever! Woo hoo!

I am 75% done with treatment! As the Chinese proverb says, the journey of a thousand miles begins with a single step. Still, I can't believe how quickly the time has passed. Only one week to go... I'm pretty excited about finally being done!

My throat is starting to feel really good and isn't giving me much pain at all anymore. I'm not sure why, but apparently my throat has either adjusted to the radiation or has stopped complaining.

One new symptom is that a thick filmy layer of sludge has formed on my tongue. It's pretty nasty stuff. I scrape it off with a toothbrush a few times a day, but I can tell that it won't go away until treatment is over.

I met with Dr. Nautiyal after treatment for my usual Friday check up. There wasn't much to talk about since I haven't really had any problems this week. Dr. Nautiyal remarked that I was doing really well. He also noted that week 3 is usually the toughest for most people, so hopefully my final week will be smooth sailing.

By biggest worry lately has been itchiness all over my body. Itchy skin is one of the symptoms of Hodgkin's disease (along with weight loss, night sweats, fatigue, and fever), so sometimes I start to freak out and worry that I might be relapsing! Hopefully, there may be another explanation: All the hair that fell out during chemotherapy is starting to grow back in all over my body and I think that may be causing the itching. I'm also assuming that being under stress might be causing some itching (just like it caused canker sores to appear in my mouth).

Still, I can't wait to talk about it with Dr. Karamlou at our next visit... and to have a CT or PET scan confirm that nothing's wrong!

My throat is starting to feel very sore, but strangely the lump-in-the-throat feeling is gone! The overall result is that I am doing much better. I can deal with a sore throat but that lump feeling was intolerable!

My neck is getting very red and dry and looks sunburned. It also feels pretty sore. I am applying a lot of aloe vera to try to keep it from getting any worse.

I have added ativan to my nightly dose of oxycodone and the result is a really good night's sleep! Still, I am pretty sluggish throughout the day and have to take multiple naps. I usually catch an hour or two after I get back from treatment and then grab a second nap just before sunset.

Even though I am entirely unmotivated to do so, I force myself to take a walk downtown every day. I usually walk between 1.5 and 2 miles round trip each day.

All in all, despite all my complaining, the radiation therapy has been much more tolerable than chemotherapy was. The old saying, "my worst day of xxx is better than my best day of yyy ever was" comes to mind.

The oxycodone works great! My throat gave me a lot less trouble the last two nights and I was finally able to get a decent night's sleep. The humidifier also helps a bit, but it's pretty loud, so I probably won't keep using it.

During the day, my throat is still giving me quite a bit of trouble. I have tried using the oncology mouthwash, but it doesn't really work that well for my throat. The lidocaine numbs my lips and mouth really well, but when I swallow it, it blasts right past the part of my throat where I need the help the most. As a result, I'm still having a lot of trouble eating and drinking.

I was hoping that having the weekend off from treatment would make me feel better, but it hasn't seemed to have made much of a difference. Unlike chemotherapy, where each day off relieves more and more symptoms, radiation is much more of a cumulative effect where the symptoms slowly get worse as time goes on.

I am pretty nervous going into week three tomorrow since I have read that it is when most patients start to experience really bad symptoms.

It's hard to believe that the end of week 2 is finally here!

Overall, I'm hanging in there pretty well. I was pretty panicked at the beginning of the week because I worried that my throat would become unbearable by the end of the week, but luckily it has been in a holding pattern. My throat only hurts when I swallow, which means it's not that big a deal during most of the day.

Eating and drinking suck however. I am having trouble staying hydrated and keeping weight on. I feel like one of those stomach-bypass patients in that I can only eat teensy bites of food at a time -- and I have to chew each piece to death, otherwise it wreaks havoc on the way down my esophagus.

Nights are pretty bad. When I lay down, it feels like there is a bump in my throat. And there is some sort of post-nasal drip that makes me wake up every few minutes to clear my throat. The end result is that I am exhausted all the time. I feel quite weak/fatigued physically as well.

The skin on the back and sides of my neck has broken out in a rash. It gets pretty itchy at times, and also aches a bit, especially when clothes rub against the skin. And it's started to peel like it's been sunburned.

Lastly, a few canker sores appeared underneath my tongue yesterday. They aren't painful and they seem to come and go. Just another symptom to deal with. I asked the nurses about the canker sores, and they said that they aren't caused by the radiation, but are most likely caused by stress.

I am feeling pretty stressed out. Most notably, I have nightmares every night. Mostly fear of relapse, but also some radiation treatment related fears, such as losing all of my teeth (Dr. Nautiyal assures me that this is not going to happen).

One waking fear that I have is related to constantly being itchy all over my body. Itchiness is one of the symptoms of Hodgkin's disease, so whenever I get an itch, there's always a little voice in the back of my head that wonders if it's the disease coming back. I think the itchiness may be caused by my hair growing back in all over my body.

Dr. Nautiyal recommended taking oxycodone before going to bed to help with my throat discomfort. He said that placing a humidifier next to the bed may help with my throat. And also that many patients find sleeping on the couch more comfortable during treatment. I plan on giving some or all of these suggestions a try this weekend!

Aimee and I are getting to know the other patients in the waiting room, which makes the daily trips a little more fun. Seeing guests accompany the patients is much more common here than with the chemotherapy. It turns out that they don't run as tight a ship here as I initially thought, so there is plenty of time for talking while we are all waiting.

There's an 80-year-old guy (patient) and his daughter (guest); I don't know what he is being treated for, but he has a lot of life in him! The daughter is intense and firmly believes in the healing powers of naturopathic medicine.

There's a 30-something guy being treated for prostate cancer. His treatment lasts 10 weeks. His eyes are always half-closed and he moves and talks languidly as if he is in a lot of pain. Despite this, he's very gregarious and talkative.

Lastly, there's a young 20-something guy being treated for testicular cancer (his dad is always there too). His cancer was detected early enough that it was removed surgically (no need for chemotherapy). His treatment, like mine, is mostly preventative to make sure that all of the cancer is gone.

I'm also getting a bit more chatty with the nurses and technicians. One of them asked me about my shaved head, since they had seen me a while back with a bit of hair. This led to a discussion about chemotherapy and which drugs I had been on. They all seemed impressed by the sheer number (seven) of drugs that I was on. Most of the patients they see are old and can't handle more than one or two drugs at once. On a related note, there aren't many young people getting treated. The technicians sometimes have trouble telling us young people apart since we all look the same compared with the majority of their patients :-)

Every so often, a technician-in-training is present in the treatment room. I've seen one guy in particular two or three times. At first, he was just observing, but lately, they have let him help with my alignment or in adjusting the radiation machine (all under supervision, of course!).

After a week without incident, my first side effect has arrived with a vengeance! My throat started to feel quite uncomfortable late yesterday: I had a little trouble swallowing, but mostly it felt like something was caught in my throat. The discomfort got worse all night, resulting in my getting very little sleep. I woke up every few minutes due to lots of throat clearing and hacking.

One of the benefits of daily treatment is that I don't need to wait long to talk to the doctor or nurses about any problems. I spoke with Dr. Nautiyal for a few minutes about the throat discomfort. He said that this is usually the first symptom that patients receiving neck treatment get. I was worried that it had occurred so soon (after only 6 treatments), but he said that it was not unexpected since my treatment area envelops so much of my upper chest.

He gave me a prescription for "oncology mouthwash", which is a mixture of lidocaine, benadryl, and one other ingredient. It is supposed to numb the mouth and throat for short periods of time (especially useful before meals). I filled the prescription but didn't end up using any yet since I am still able to get food and liquids down with lots of chewing.

Dr. Nautiyal reassured me that if my symptoms got much worse by the end of the week, that he would reduce my daily radiation dose a bit. This would help alleviate some of the symptoms at the expense of extending the length of the treatment.

I'm 25% done with my radiation therapy as of today.

In addition to my daily treatment, I have regularly scheduled meetings with Dr. Nautiyal each Friday. It was a pretty quick meeting this week since I really didn't have any symptoms to report. A surgeon was shadowing Dr. Nautiyal; he obviously wasn't a new doctor in training. I think he was doing some cross-training, keeping up-to-date on other disciplines, that sort of thing.

Dr. Nautiyal surprised me last night with a call at home. He wanted to tell me that he had finally heard back from the radiation folks at Stanford. They are supposed to approve the radiation plans for each clinical trial patient, but they had been ignoring repeated calls from him up until now. They gave a thumbs up for everything Dr. Nautiyal has planned for me, which is a good thing since I am already a week into it! Anyway, Dr. Nautiyal knew that I was anxious to hear what Stanford had to say and I appreciate that he stayed late at work (6:45pm) to call and let me know. He is a very caring, considerate, and hard working doctor!

My only real "symptom" to speak of is psychological: I worry a lot about the long-term side affects of radiation. To help assuage my fears, Dr. Nautiyal whipped out my treatment notebook, and showed me some of my various simulation reports. One of the reports show how much radiation various parts of my body are going to get (lymph nodes, spinal cord, parotids, etc.). I was really impressed at how he was able to deliver 100% of the radiation to the lymph nodes while delivering much less radiation to all of the other organs in the area (a few places get 50%, but most areas get much much less).

I am looking forward to having the weekend off from treatment. Even though the treatments are short and I haven't had any symptoms, the daily treatments feel a bit relentless at times.

They run a tight ship down in the radiation department -- things pretty much run right on time. The typical visit for treatment takes about 10 minutes total from the time we enter until the time we leave.

After arriving at the office, we walk right past the receptionist's desk (no check-in or copays, woo hoo!) and sit down in the waiting area, which also doubles as a changing room. There are separate rooms for men and women, but there are always plenty of women hanging out in the men's room. The room isn't crowded; usually just the person who went before me and the person going after me. Many people, including myself, don't change at all, since the radiation is to our upper bodies and we will have to take off anything covering our chest anyway.

When it's my turn, Michelle (radiation technician) comes down to get me and escorts me back to the treatment room. In the treatment room, I take off my shirt and lie down on my customized styrofoam bed. Michelle and Nancy then spend a few minutes adjusting both the bed and me. Once I am aligned, my powers of observation are more limited since I am too petrified to even move my eyes around for fear that I'll accidentally move my head as well, causing the wrong body parts to get zapped.

After my body is perfectly aligned, somebody slides a plastic tray into a holster directly below the radiation aperture. The plastic tray has several 10cm thick lead blocks screwed to it. The lead blocks were custom sculpted based on computer models to shield as much of my body as possible from the radiation. On my tray, there are two blocks that shield the sides of my chest (lungs, etc.) and another block that shields the right side of my neck.

Once the tray is secured, Michelle will call out "110", which I originally thought was some code word for "ready to go", but I later learned is the distance of the treatment bed from the radiation aperture. Even if it isn't a code word, it does seem to act as a transitional phrase, as the next step is always the treatment.

The treatment is given in two steps, first to the top of my body, and then to the bottom. For each treatment, everybody leaves the room and the door is closed. Out of the corner of my eye, a computer monitor starts flashing something (probably a big warning message like "GET OUT OF ROOM NOW!"), and that is my only indication that treatment is about to begin.

The treatment itself lasts about 30 seconds and is not painful. The only unpleasant part of the treatment is a weird odor that I sense whenever I exhale. It only happens when the radiation beam is "on", and the odor goes away as soon as treatment is over. I asked the technicians and the nurses about this phenomenon, and they looked at me like I was crazy. They said that I was the first person to ever mention this to them. I later discovered from a Hodgkin's mailing list on the Internet that many people have had this response, although the exact cause is unknown. The prevailing conventional wisdom is that the radiation changes some of the oxygen (O2) in my lungs to ozone (O3) and that is what I am smelling. (I later asked Dr. Nautiyal about this, and he said that it wasn't ozone... and that there is no medical explanation for it.)

As a result of the odor, I try to exhale as little as possible during treatment. Holding my breath the whole time is a bit uncomfortable, so I have found that doing two complete (but s-l-o-w) breathing cycles is a good compromise.

After the top side is done, somebody comes back into the room to swap out the shielding tray. The big arm holding the radiation aperture rotates down under the bed as the bed simultaneously raises up in the air. It's a pretty impressive feat of machinery in motion, especially when you consider that the machine has to align itself perfectly after each movement.

Because the radiation beams are attenuated differently when they enter the body on the bottom, a different shielding tray is used. The technician swaps out the second tray, usually says something like "here's the second part", leaves the room, and the treatment described above is repeated.

Throughout the whole treatment, I am supposed to lie perfectly still with my hands above my head, my chin thrust up into the air, and my head cocked slightly so. My number one fear throughout the treatment is that I will move slightly causing the wrong areas to be irradiated.

The post-treatment routine is pretty unceremonious. I put my shirt back on, bid adieu to the technicians and leave, but by this time, they are already busy preparing the machine for the next patient. With the tight schedule, there isn't much time for chit chat or bonding with the technicians. Not that I blame them. They have tons of patients to see. Patients also go every day, so a few minutes of chit chat every visit would multipy into a significant amount of time!

Another scary observation is how many treatments they give in a day: 10 or 15-minute slots all day long, each one representing a cancer patient. That's a lot of cancer patients.

I had my first radiation treatment today. Because this is my first visit, they did some additional diagnostic and quality control procedures, which stretched my total time in the office to about an hour. All of my future visits will be treatment only, which will just take a few minutes. I'll focus on the unique aspects from the first day right now and cover a typical visit in a future journal entry.

The radiation technicians, Michelle and Nancy, introduced themselves and then got to work fitting me to the custom styrofoam mold bed that was made a couple of weeks earlier. The radiation machine is just a sled with a giant arm that hangs over your body. There are a bunch of alignment lasers that shoot all over the place as well. The room itself has no windows and a thick, shielded door. The styrofoam mold beds for all of the other patients hang on the back wall. An elaborate shelf system holds the custom built lead shielding plates for each patient.

Michelle and Nancy spent quite a bit of time tugging on the styrofoam mold bed until it was positioned perfectly. They then micro-adjusted my body (a push on the shoulder here, a nudge of the chin there) until I was perfectly aligned as well. Using a Sharpie pen, Michelle marked off the exact area on my body that would be radiated. Of my seven tattoos, I think the one on my chin and the one near my port were not usable anymore for various reasons. Nancy drew a small line just below my left jaw with an alcohol-resistant marker. This line will ensure that my head is tilted correctly on future visits. They will "touch up" the line every day throughout my treatment. They said that they use the marker to avoid having to give patients additional tattoos, something I definitely appreciate!

After the alignment and marking was complete, three or four sets of diagnostic x-rays were made. Each set comprised two exposures. The first exposure was just like any other x-ray I've had; on the second one, I noticed a blue light and a funny odor while the radiation beam was on. In between each set of x-rays, I had to wait on the bed, lying perfectly still and trying not to move at all. The whole time, my head was cocked at a slight angle and my arms were hanging over my head. After almost 30 minutes of this, my arms and head started to feel pretty sore. At one point, my butt fell asleep as well.

Once the x-rays were complete and verified, Dr. Nautiyal came into the room, checked everything, and gave his final approval. While he was there, he told me that my neck extension was very good and that he was able to spare all of my right parotid and most of my left parotid from radiation. Damage to the parotids is the primary cause of dry mouth, so this was welcome news.

The treatment itself was quick and painless (more on this later). Afterwards, we set the regular appointment time at 8am (yawn!) and left for home.

While I didn't experience any nausea or pain, the first treatment definitely knocked some of the wind out of my sails. I had been feeling quite good over the past few weeks, but it felt as if the first radiation treatment had erased all of the gains I had made since the end of chemo. Upon returning home, I didn't really feel like eating or drinking anything, and I took a long nap in the afternoon.

Radiation treatment photos

Aimee has been threatening to start calling me "The Donald", so I decided to throw in the towel and shave off my remaining hair. It's ironic that I didn't have to do this until two weeks after my chemotherapy ended, but that's life in the Wonderful World of Chemo^TM.

I really had no choice as my head has continued to drop hundreds of hairs a day. It was a mess up there. A large "U" shaped bald spot had formed on the part of my head that rubs against my pillow. It was this spot in particular that convinced me to shave all of my hair off.

Now I get to see my head in the "chia pet" stage when my hair does finally grow back. This is also the ideal time to experiment and see exactly how I look with a shaved head! At the very least, I'm looking forward to not having to shampoo or worry about styling my hair.

Aimee and I had set aside Sunday evening as head shaving time, which happened to coincide with a last-minute visit from Brian and Grace. Brian volunteered to do the shaving honors. I think he did a pretty good job!

See the head shaving pictures

With no doctor's visits to attend, treatments to endure, or medication to take, this has been a truly wonderful "week off". I am definitely getting stronger and more energetic every day.

My week off has coincided with a break from the normal rainy deluge in Portland. It has been absolutely gorgeous all week. I have been taking long walks (almost 4 miles total today) downtown, simply enjoying the warmth of the winter sunshine on my face, the call of the birds at my ears, the gentle tug of the occasional breeze on my hair, the beauty of both nature and man's accomplishments in my eyes.

It feels so good to be able to walk around and not feel weak, sick, or nauseated! As my head bobs to happy tunes on my iPod, I observe stressed out people all around me scurrying about their lives. I want to stop and shake them and make them slow down and embrace and enjoy their healthy lives. But I realize the futility of such desires. I too was a scurrier not so long ago.

In parting, I leave you with two reading assignments: Three Days to See by Helen Keller and Gordon the Guided Missile. Determining what's truly important in life and adjusting your life accordingly is a daunting task. Let me know if you figure out how to do it :-)

If you measure from the date of my last chemotherapy treatment, I have been done for two weeks. If you measure from the last day of the chemotherapy cycle, I have been done for one week. Either way, I am feeling much better. I have zero nausea, my energy level is picking up, and my appetite has pretty much returned to normal.

My sleep pattern is slowly returning to normal as well: I was getting about four hours of sleep during chemotherapy; I estimate that I'm getting around six now. I toss and turn a lot, however, and always get up once to go to the bathroom, so the sleep is not as restful as it could be. I am also having quite a few nightmares, mostly a scene in the doctor's office where a huge lymph node/tumor is growing somewhere on my body (like my ankle) and I am freaking out about it to my doctor.

My hair continues to fall. I had expected the hair loss rate to slow down considerably after chemo, but it is still going at a pretty good rate. Every few days, I am still tempted to go ahead and shave it off as it is looking pretty bad (much worse than Donald Trump's hair, and I used to think that his was the worst!). There is a thin veneer of hair that hangs like scaffolding over my head, and then pure baldness underneath. Hopefully it looks no worse than any other man who is losing his hair.

Here's a deforestation report for the rest of my body:

• Eyebrows: Thinning, but not too bad.
• Beard: Soft peach fuzz hair. I only need to shave every other week.
• Chest: About 75% gone.
• Armpits: About 75% gone.
• Private parts: About 95% gone.
• Everywhere else (arm, leg, toes, etc.): Pretty much unaffected.

My fingertips are still numb, although my pinkies are stating to return to normal.

My legs, and especially my knees, ache a lot. I am hoping that these are mere artifacts of my sedentary lifestyle and not something more serious. I have seen some complaints about bone mass and muscle loss caused by Prednisone on some of the Hodgkin's support groups on the Internet. However, I have not been able to substantiate these claims with any reputable sources on the net; I plan on asking Dr. Karamlou about it next time I see him.

I was originally scheduled to have my portacath removed on 23 February, but Dr. Nautiyal didn't want me to have any surgery once my radiation starts on 16 February. Dr. Khaki's office was able to move up my surgery to today, although I had to go really late in the afternoon (2:00 check-in for 4:00 surgery). Sometimes this makes me nervous as I worry that the doctors and nurses will be tired after a long day of work, but I suppose it's nothing compared to 120-hour weeks they put in during residency. Also, you are not supposed to eat or drink ANYTHING (including water) starting 12 hours before the operation. Being dehydrated and hungry was not a pleasant way to spend my morning.

Bye bye portacath! The portacath is not as prominent as it used to be due to my increased body fat.

I estimate that the total roundtrip cost of the portacath will be about $7000. I used it for 15 chemo treatments, which comes to $470 per use. So it was a bit expensive and a hassle to put in and take out, but I saved the veins in my arm from a substantial amount of abuse. All in all, I'm glad I got it.

Getting ready

Two failed IV attempts (plus one successful one)!

The first nurse who tried to set up my IV did a terrible job. She failed twice before handing off the task to someone else. Because the best two choices were already ruined, she put the IV into a vein on my hand, which was a first for me! A few days later, huge bruises appeared from all of the leaked blood at the two failed IV sites.

I learned that you can request a specific anesthesiologist if you call the OR ahead of time (although this may require some schedule flexibility). Since there was such a difference between my first two anesthesiologists, I was hoping that this time would be more like Dr. Wong and less like Dr. WhoeverItWas. Dr. Robinson turned out to be wonderful and I would highly recommend her. She has an excellent bedside manner and expertly administered the drugs so that I hardly felt groggy at all when I came to. In Dr. WhoeverItWas's defense, he had to put me out for a much longer and more involved operation.

Souvenir portacath

My favorite part about a trip to St. Vincent's -- the free water bottle :-)

I was given a prescription for vicadin, but I didn't fill it since the pain wasn't too bad. Tylenol was more than adequate for the first night, and by the next day, the pain was manageable without any drugs. Indeed, the worst part of the whole operation was probably pulling off the bandages and tape (and attached hair!) from my chest two days later!

I healed much more quickly from this operation than when it was put in. I was pretty much back to normal 2-3 days later.

I headed over to Dr. Nautiyal's office first thing in the morning for my radiation planning. The whole point of the planning is to produce a 3D model of my body so that the radiation can be delivered only to those areas where there was disease. Hopefully, this means that important vessels and organs will be spared the bulk of the radiation. A second objective of the planning session was to make sure that they can reproduce my exact position each time I come in for treatment. A deviation of even a few millimeters can mean the difference between irradiating the right and wrong areas. This procedure involved a CT technician (Amy), dosimetrist (Chris), and Dr. Nautiyal.

While checking in for my appointment, they told me that they weren't sure if Dr. Nautiyal would be "in network" for Cigna, but simply to let them know if that's the case and they will automatically adjust the bill so that I don't have to pay anything. I wish every office were as proactive and reasonable!

Dye injection

Getting ready to scan

CT control room

CT scanners can do regular x-rays too

Placing alignment BBs

Getting tattooed

The next step involved shooting alignment lasers onto my chest and using a marker to note several alignment points. Chris later used a syringe filled with ink to permanently tattoo seven of these alignment points onto my skin. The tattoos are not large (they are like tiny blackheads), but I am not very happy about having to get them. Aimee pointed out the irony of my having to receive tattoos, since I absolutely hate tattoos!

I ended up with three tattoos spaced across my chest (below my nipples), three more evenly spaced above my diaphragm, and one on the tip of my chin. The one of my chin is probably the most annoying since it is quite visible. Amy thinks that it will probably fade off eventually due to shaving. If not, there's always laser surgery to get rid of it!

After everybody was sure that my position could be reproduced, I was sent through the CT scanner one more time. I had to receive another injection of the IV contrast, but didn't have to drink the oral contrast. The scans will be fed into their modelling software, which will determine where and how much radiation will be delivered. These CT scans were much easier than the ones at Body Imaging because I didn't have to hold my breath.

Before leaving, Amy showed me my scans on the workstation. 96 scans were collected in all, each one representing a tiny sliver of my body. It is fascinating to see all of the different organs in the body, as well as foreign bodies (like dental fillings) that cause the x-rays to scatter and form artifacts on the display. They had also taped several metal ball bearings on my body to aid in the computer modeling, and these were quite visible on the scans. If you have any doubt at all about the importance of the CT scanner in modern medicine, and whether or not its inventor should have received the Nobel prize, read this article on the Naked Scientist.

Previously, I had asked Dr. Nautiyal if I was going to be fitted for "body armor" to protect the rest of my body from the radiation (just like in the dentist's office). He chuckled and said that the radiation that they use would cut right through anything like that. Their radiation "gun" (I'm not sure what it's called) generates 7 million volts and requires 10cm of lead for shielding! They will place these 10cm blocks on the gun itself since they would be far too heavy and bulky to be placed on me directly.

After we were all done at the radiation planning, we grabbed a bite to eat down the street and then went to Dr. Karamlou's office to discuss the results from my diagnostic full-body CT scan on Monday.

It felt strange (but good, obviously) not to be getting chemotherapy. I still went through the regular office ritual (weight, blood pressure, pulse, temperature, complete blood count), but luckily I didn't experience any anticipatory nausea. It looks like my body is smart enough to realize that it's all done with treatment.

Dr. Karamlou told me that the CT scan results were as expected. All of the tumors in my lower body have disappeared completely. Before starting treatment, it wasn't clear if the enlarged lymph nodes in my lower body were tumors or something else. Their disappearance in response to the chemotherapy proves that they were tumors and that I was definitely in stage III of the disease.

The largest tumor in my body (in my mediastinum) has shrunk to 2cm. While I had hoped to hear that it had disappeared completely, both Dr. Karamlou and Dr. Nautiyal say that this is expected behavior. The tumor will probably continue to shrink as the chemotherapy drugs finish up their work. And, of course, the whole area will be getting irradiated anyway. Lastly, when very large tumors shrink, they often leave behind permanent scar tissue. The scar tissue is benign, but the CT scan doesn't differentiate. The only way to know for sure is a PET scan or to monitor the area to make sure it doesn't grow.

End-of-treatment celebratory photo with Dr. Karamlou

He is such an easy going doctor that our consultations seem more like hanging out with a friend than an office visit. I am so glad that he was the doctor that accompanied me through this experience. Looking back on all the advice I received early on, the people who said to choose the doctor that you're most comfortable with were spot on. As I look to the future, I realize that Dr. Karamlou and I are going to be together for many years to come (at least five years of follow-up visits, unless one of us moves away).

I went to Dr. Khaki's today. I thought I was going to have my port removed in his office, but he wants to do it in the OR. He said he can do a much better job of removing the port and closing up the wound (using cauterization instead of sutures), the lighting and equipment is better, it's more sterile in there, etc. I suppose it's also a good place to be if something goes wrong!

He'll be on vacation next week, so we scheduled the surgery for 23 February.

Happy birthday to me!

I went to Body Imaging for my restaging CT scan, covering my head, neck, chest, abdomen, and pelvis (pretty much my whole body except my legs). The procedure took quite a while because it was essentially three different scans. I had to drink a barium contrast solution about an hour before the scan, and also received two separate injections of IV contrast.

After the scans were done, they had me wait on the scanner for about 15 minutes while they made sure that all of the scans turned out ok. This gave me a lot of time to think about what the results will end up being and whether I am cured or not. The best birthday gift in the world would be a clean bill of health.

As part of the clinical trial, I will be getting CT scans every six months for the next three years, and then once a year for years four and five. I won't get any scheduled scans after that, unless there is some medical reason to do so. For future CT scans, I plan on wearing a "CT scan outfit" that has no metal whatsoever so that I can avoid having to change into a hospital gown.

The past few times I've been in for an x-ray or CT scan, I've asked the technician how much radiation these procedures generate. Their answers have been pretty unsatisfactory, so I hit the web: The FDA has a pretty good explanation of the radiation risks from CT (fda.gov):

A chest x-ray is equivalent to 2.4 days in the sun (0.002 cSv).
A head CT scan, 243 days (0.2 cSv).
An abdomen CT scan, 3.3 years (1 cSv).
My upcoming radiation treatment: 11,880 years (3600 cSv)!

The FDA site also has a good explanation of the differences between the various measurement units used in radiation: rads, grays, sieverts, and rems. I calculated the 11,880 year figure above assuming that the weighting factor for radiation treatment is 1 Sv = 1 Gy. Next time I see Dr. Nautiyal, I'll see if this is correct or not.

I also had a chest x-ray done while I was there (for the clinical trial). While the full radiology report wasn't done by the time I left, I peeked inside the folder and saw a note that said "no active cardiopulmonary disease".

Aimee and I met with Dr. Nautiyal today to go over the next phase in my treatment, the radiation therapy. I was also supposed to receive a planning CT scan, but their CT scanner wasn't working. The planning CT scan helps them figure out where exactly (down to the millimeter, if I understand correctly) to shoot the radiation beams. This will be rescheduled for next week.

While we were waiting to see Dr. Nautiyal, my eyes came to rest on a door at the end of the hallway with the international radiation symbol on it. One of those "do-not-enter-while-light-is-on-because-you-will-get-fried" lights was also above the door, clicking on and off. Even though I have known what was coming for many months, the reality of the situation hadn't really sunk in until I saw that door.

Dr. Nautiyal started off by doing his signature super thorough physical examination. He then wanted to stick the fiberoptic tube scope in my nose and look around again. The two previous times I've had this done, I felt that the anesthetic (lidocaine) that they used was much worse than the procedure itself. So I went without it this time and tolerated the procedure much better.

We then discussed the possible long term side effects of the radiation. It's pretty much the same list as he discussed on our first visit back in November:

• 30% chance my thyroid gland will be destroyed. I already knew about this, although last time I was told it was 15 percent. My chances are getting worse! This can be rectified easily enough through daily medication if it happens.
• 10% chance of secondary cancer down the road (like leukemia). This would seriously suck. However, it would suck much worse to not completely cure my existing disease and have to go through a stem cell transplant.
• A chance that my parotid glands (saliva production) will be affected, resulting in dry mouth. I will definitely be receiving radiation on the left side of my neck; if I receive it on both sides, the chances of something going wrong in my parotids goes up.
• A small chance of getting L'Hermittes Sign, a condition where the hands and spine "buzz" (electric shock sensation) when you touch your chin to your chest.
• A very small chance of paralysis.

Pretty scary stuff. On the bright side, the treatment itself only takes a few minutes a day and is not painful at all. It is supposed to be like receiving a diagnostic x-ray. The only expected side effects during treatment are fatigue, sore throat, and dry/sunburned skin.

One thing that caught me off guard was the size of the area that will be treated. I had thought that it would just be my mediastinum, but it turns out that the 7.5cm tumor that was originally present there extended up the left side of my neck. The trial requires a buffer zone of 5cm above and below where the tumor used to be, so my total area to be treated will extend from just below my jaw all the way down to my diaphragm. Dr. Nautiyal seemed surprised that we were surprised. He is very thorough; I'm sure he probably mentioned this back in November when we talked to him, but with everything else going on, it may not have sunk in.

Hearing that I'm going to have such a large area zapped freaked me out quite a bit. I figured that the heart, lungs, and other important body parts in the treatment area would be at risk for damage, but Dr. Nautiyal doesn't seem to think that there is much risk at all. Decades of radiotherapy research and treatment have determined the tolerance of various organs, and my treatment dose (3600 cGy) is well below the problem threshold for most of the organs (7000 cGy for the heart, for instance).

The same old question that comes back to haunt me again and again is whether one month of radiation is less toxic than three more months of chemotherapy would have been. There has been a significant amount of evidence showing that patients with bulky disease tend to relapse in the bulky area if they relapse at all. So there's a lot of motivation behind giving extra treatment to bulky areas of disease. On the other hand, because Hodgkin's Disease strikes so many young patients, there is a strong desire to treat as little as necessary in order to avoid secondary cancers down the road. Read this Medscape article (free registration required, scroll to the paragraph starting "The third plenary") or this excellent Blood journal paper (search for the paragraph starting "A recently published") for more information.

As far as I can tell, whether to radiate or not after chemotherapy is the biggest debate right now in treating Hodgkin's patients. Of course, the most important thing is to cure the disease that is currently present rather than try to prevent a future disease that may not even happen and, in the process, undertreat the current disease. I have heard that your best chance at being fully cured comes with your first attempt; relapses are really bad news since the body is much weaker and the cancer comes back tougher.

So, charge up the ray guns, I'm going forward with the radiation therapy. I'm definitely feeling very depressed today, the most depressed I've been since way back in October when I was initially diagnosed. Sitting down with Dr. Nautiyal and going over the gloom and doom list of all the things that can possibly go wrong was a little too much for me to handle. I suppose in a way it makes sense since it feels like I am starting treatment all over again, and thus will be going through all of the psychological stages that I went through before starting chemotherapy. Hopefully I will feel better once I begin treatment.

Last chemotherapy!

I didn't meet with Dr. Karamlou, so it was a quick visit. I only had to receive one quick drip bag (Bleomycin) and one injection (Vincristine) and I was out of there. A little underwhelming and anti-climatic, but that actually corresponds to how I feel. I have been in the chemotherapy routine for so long that it feels weird to be done. The last time I felt this way was after final exams in college: Downshifting my brain instantly from full-speed to zero left me with a full tank of gas and nowhere to go. Also, I am not really done with treatment, as I still have the radiation to go. Depending on how you measure it, I am either 50% done (objective-based) or 75% done (time-based).

Nevertheless, it feels really, really, really good to be done with chemotherapy. Looking back, it wasn't as horrible as I was expecting, but it's definitely something I never want to go through again.

Goodbye, sharps container!

I felt a pang of sadness since my time with everybody at the office is drawing to a close. I have shared an intense, life-saving experience with these people, and I will never forget any of them... especially Nancy and Carol (and, of course, Dr. Karamlou, but I'll cover him in next week's journal). Without their help and support, this entire experience would have been much more difficult. I am overcome with gratitude that they have chosen to dedicate their lives to helping patients overcome cancer. Oncology can't be an easy field of medicine, with all the suffering and patients dying off all the time.

Near the end of my treatment, Carol and Julie showed up with a surprise: A congratulatory card, flowers, balloon, and coffee mug full of chocolates. It was a very touching moment, and combined with the sentiments I just mentioned, my eyes started to get a little juicy.

I exchanged a round of hugs with everybody and then headed home to sleep off the effects from my last round of chemo! (It feels good to stick "...from my last round of chemo" on the end of everything!)

Today is the last day for my many of my medications, including:

• Last neupogen shot!
• Last Prednisone!
• Last Nexium!

This is very exciting for me as remembering to take my medications, and remembering which medications to take on which days, has been somewhat stressful for me. I'm looking forward to not having to worry about if I forgot to take my pills, not getting poked in the arm every day, and not having so many drugs swirling around in my body.

I have been using two pillminders and a medication log to keep track of it all. (If you need a TIFF viewer for the medication log, I recommend AlternaTIFF.)

I spoke with Dr. Nautiyal's billing office today and they have agreed to waive the part of my bill that is above the reasonable and customary amount that Lumenos has already paid. Dr. Khaki's office and Oregon Hematology appear to have done the same, as they haven't tried to collect any balance due from me either.

Speaking of insurance, I found a lost journal entry that I had forgotten to post from way back in December. You can read it here.

I had a terrible night's sleep last night and felt lousy all day. I'm not sure if I feel bad because of the lack of sleep, the lack of Prednisone, or from the recent chemotherapy treatment. I'm also constipated again.

The Emend has been doing its job and I have not been too terribly nauseated, but drinking is a huge problem. Given my recent constipation problems, I am especially cognizant of the need to stay hydrated. Water and other drinks are just not appealing for whatever reason.

I mentioned this to Nancy, who gave me a couple extra bags of saline via IV to help hydrate me. All in all, I ended up with 1 bag of Etoposide and 3 bags of saline, for a total of between 1.5L and 2.0L of liquid. "Drinking" in this manner is definitely convenient! If only I could figure out some way to do it while doing mountaineering and other intense sports... maybe a new product line idea for Camelbak.

Asleep again

Drip bags

Taking a call

This video shows the view most of the time while receiving chemotherapy. (If you are having trouble viewing the video, try Quicktime.)

Today was my last "bad week" treatment ever! Even though I knew in my mind that it wouldn't be as bad as the treatment was two weeks ago, I still psyched myself out ahead of time and ended up really nervous and nauseated.

When I met with Dr. Karamlou for my pre-treatment consultation, we discussed my constipation from the previous weekend. I also mentioned my recent leg weakness and how my portacath has been hurting me all week. Every so often, I start to worry that my portacath has formed a blood clot and is about to kill me (this is usually precipitated my some miscellaneous body ache in my chest). But in this case there was obvious bruising all around the port, so I probably just whacked myself during the week without realizing it.

As for the leg weakness, I had blamed it on vinblastine, but Dr. Karamlou thinks it was a result of having been on such massive doses of Prednisone for an extended period of time. He told me that most other regimens that use large amounts of Prednisone (treating non-Hodgkin's lymphomas, for instance) only go for 5 days or so and then take a break. I have been on 70mg every other day for over two months! Needless to say, I am thankful that I am tapering down and will be completely off of it by the end of the week. I still don't know exactly what it is that the Prednisone is doing or how it fights cancer, but I have talked to enough people to know that it is a very powerful corticosteroid that shouldn't be messed with lightly. I am happy to be done with it.

[Update, 5 February: According to Chemocare's Prednisone fact sheet, the main side effects are increased appetite, irritability, insomnia, heartburn, muscle weakness, headaches, dizziness, mood swings, eye problems, increased sun sensitivty, and weakened immune system. These are only the side effects that I've experienced; see the article for the full list. The site also has a good description of how Prednisone fights cancer: It decreases swelling around tumors and alters the body's normal immune system. Prednisone can even be used by itself without chemotherapy to treat some very early stage cases of lymphoma.]

After so many weeks of being in the same old chemotherapy routine, it was exciting to discuss the next steps I'll be taking from here:

• After my last treatment, I will be restaged to determine how much (if any) disease is left in my body. This will involve a full-body CT scan.
• I'll have my evaluation meeting with Dr. Nautiyal in which they will do all the 3D modeling and simulations necessary for the radiation treatment. This will also involve several CT scans. I've stocked up two bottles of the yummy barium contrast in my fridge in preparation for all of this scanning.
• I can have my portacath removed any time after the last treatment! Having the portacath removed is a huge psychological milestone, not only because it means never having to get another chemo treatment, but also because of all the pain and nausea that I have associated with it. I had read on the Internet that many patients leave their ports in for many months after treatment in case of relapse, but Dr. Karamlou didn't seem concerned about that at all.

My bloodwork this week showed that I have officially crossed the line into being anemic. Normally this would mean that I would start taking Procrit shots (red blood cell booster) in addition to the Neupogen shots I am already taking. But since next week's treatment is the last one, and it's not immunosuppressive, Dr. Karamlou advised not getting the shots. My body will start getting better on its own once chemo ends.

The actual treatment itself was uneventful as usual. I was cold again and had to pile on two blankets to get warm. I tried to watch a DVD, but ended up falling asleep almost immediately. I remember the early days of chemo when I was full of energy and would see other patients dozing away in their chairs. Now I have become those other patients.

Aimee and my mom kept me company throughout the entire treatment.

I have finally thrown in the towel and decided to go on short term disability from work. I was barely holding on before the end of the year, and now the slow gradual decline of chemotherapy has taken its toll.

It's a combination of things: I get extremely tired in the afternoons and have to take a nap. I have trouble concentrating for more than a few minutes on complex tasks. I have horrible sleep patterns that make it hard to get up and to work at a reasonable time. And, of course, there's the actual chemotherapy treatments themselves and their side effects. Plus, at best, I have been working at 25% efficiency, which isn't fair to the people I work with.

Everybody at work, from my colleagues all the way up the management chain, has been so wonderfully supportive. It makes me feel very grateful to work with such good people at a good company. I remember not too many years ago when the siren call of the Internet bubble was luring everybody away to startups. Startups with no benefits, but plenty of stock options, so nobody cared about the benefits. I thank my lucky stars that I didn't end up working for one of those companies... After I get better, I look forward to staying right where I am for many happy years of work.

Anyway, for now, I am looking forward to focusing 100% on getting better and not having to worry myself with the quotidian concerns of the working world.

Because I signed up for Short Term Disability insurance last year, I'll get about $500 a week for the first 12 weeks of disability. My company is generously making up the difference (they call it "Salary Compensation") between my regular salary and what the insurance pays. After 12 weeks, the salary compensation goes away and the disability insurance pays more, but I plan to be back at work by then anyway.

I had dinner with Ben, Annie, and the rest of the gang at the Big House tonight and tried to play Dance Dance Revolution afterwards. I realize now just how much of a tubby I've become. I started out well enough, but hit "the wall" after about a minute of dancing. It felt as if I had been exercising all out for a much longer period of time, like trying to sprint a mile at full speed. My heart was pounding intensely and I felt as if I might throw up. My whole body went clammy and I broke out in a cold sweat. I was able to walk around again after a few minutes of sitting down, but it took over an hour for my body to fully return back to normal!

I am limiting myself to walking for exercise (and maybe slow Dance Dance Revolution songs) from now on :-)

Speaking of getting fat and lazy, I am acquiring quite a pooch and many of my pants are tight around the waist now. My body fat is hovering around 10 percent now, almost three times the level after I finished my bike ride across America (3.5%).

I am starting to feel a lot better, although I am still tired all the time. I am looking forward to my blood count test next week to confirm my suspicions that my red blood counts are still dropping.

I hadn't had a bowel movement since Thursday, but was finally able to squeeze something out by exerting myself quite a bit. I was shocked to see a tablespoon or so of bright red blood in the toilet bowl afterwards. "Blood in stool" is on the "call immediately if this happens" list, so I called the office, even though I always feel guilty about bugging folks on the weekend.

As it turns out, Dr. Karamlou was the doctor on call. He told me that I had probably torn something by exerting myself too hard and also that I am really constipated. Whatever the cause, it certainly hurt quite a bit, sort of like straining yourself while doing weight lifting squats. He advised heavy doses of fiber, laxatives, and stool softeners to get things flowing normally again.

Ever since I started chemotherapy, I have been warned that constipation would be a problem. I have been lucky up until now, but, like so many other things, the cumulative effect of the chemotherapy has finally caught up to me.

On an interesting note, I learned later that Dr. Karamlou is on call every fifth weekend or so. And that some of the other doctors at the office pay retired oncologists to cover for them when it's their turn to be on call. Aaah, the behind-the-scenes mechanics of running a medical practice... very interesting!