Florida Bound

in a few hours. And I can't wait :)

Feeling good overall, still have some minor problems w/fatigue but that's going away over time. Went to m/so on Wed for a Christmas party at bunnies - met up w/Dave and Jerry and a bunch of other friends. It was a really good time and I was very happy to see everyone (and they seemed to reciprocate).

As you already know, I'll be FL for the next 3 weeks. I do have my laptop with me and internet access so I'll be checking my blog and may post a time or two if I am so inclined. Mostly, I'm going to enjoy myself and forget about most everything while I'm there.

So Merry Christmas everyone, and if not before, I talk to you in the bright, shiny, new year :)

--Dr. D

Mostly Alive

Currently listening to the Smith's "How Soon is Now?" on Alt Nation - if there's a better song, I don't know what it is :)

So last Monday I thought a lot about Miracle Max's quote from The Princess Bride "mostly dead is slightly alive". At the time I felt mostly dead and it was good to remind myself that, indeed, I was slightly alive. Mostly had to do with fatigue and lack of sleep but generally feeling horrible overall didn't help much either. The week has made a huge difference; I feel a lot better now. My night fevers stopped on Friday so I believe my wbc count is in a decent range and I've been sleeping well ever since. Spent most of Saturday sleeping actually. My appetite started returning on Thursday and I had a ginormous lunch on Friday as well as a fantastic brunch on Sunday (with Min at a place called Annie's on 3rd & 79th - highly recommend - particularly the pancakes) along with a number of very nice meals in between - my weight has started going up again which is good news (I had gotten to the extreme low end of my weight range last week) except that I'm going to have to start watching what I eat (damn). Last week, my arms and legs were shaking a lot due to lack of strength - while my strength is not 100%, the shaking has stopped and I think in a few more days most of my strength will be there. At this point, my biggest problem is still w/nausea - while it's diminished it seems to recur. This morning I woke up w/that feeling and just didn't want to get out of bed but you gotta fight this stuff so I took some Zofram and got myself moving. Fatigue is the other issue that I'm going to have to continue to contend with as it also tends to recur. So while I feel a lot like my normal self most of the time every now and again a wave of fatigue just hits me.

If it's not obvious, the meaning of the title of this post, Mostly Alive, is that while I don't feel completely recovered, the scales have tipped in my favor. I am optomistic that over the next week I will continue to improve such that when I get to FL on Sunday I should be pretty much back to normal (so head's up down there).

--Dr. D

A Good Meeting w/Dr. I

So I met w/Dr. I this afternoon. While I continue to feel a bit better each day, I've had a few concerns that I wanted to discuss w/him because the last thing I want is for something to happen that would cause me to have to delay my vacation. My primary concern was that I've still been having fevers at night - they don't get that high but they're to the point where I would have to get them checked out at urgent care. Dr. I said that it is not umcommon for people to have this kind of reaction to radiation and that he's confident that the fevers should go away over the next week or so. My feeling is that it is possibly a wbc count issue as well, given my history. Today my wbc count came in at 2500 which is decent but still in the range where my temperature fluctuates. He broke down the blood cell counts even further and the number of disease fighting cells is quite good and the number of new cells that will develop into wbc's is high - Dr. I sees these as very positive signs and expects I will feel much better over the next week. My red blood cell count is quite good too, despite the fact that I no longer take iron - he says this is a very good indication that the tumor has reduced a lot more. We're both hoping for total elimination, of course, but I'll take what I get. Another problem I've been having is that I feel nauseas and don't really find anything appealing to eat - each meal is a bit of a struggle to force myself to ingest enough to keep from losing weight. Dr. I says this is pretty standard and not to be concerned about it - it should also go away in the next week or 10 days. Finally, I've been having trouble sleeping - part of this has to do w/the fatigue (which, ironically, makes it difficult to sleep) and part of it has to do w/the fevers - Dr. I has recommended that I take tylenol before going to bed which should take care of the fever issue. In fact, last night I took some tylenol and had a great sleep so I was happy that he was cool w/it. Fatigue is still a problem but as I do more, it gets better incrementally - once I start getting some good night's sleep it should improve even quicker. I just gotta keep moving :) My hair seems to be coming back w/a vengence. My facial hair had gotten a lot thinner and lighter (almost the color of my skin, so you could barely see it) - the other day I woke up and, to my amazement, once again had a visible goatee (well, van-dyke for those of you who have been following this blog). The hair on my head is also coming back much thicker - it's been just over a week since I had it shaved and it's already pretty fuzzy all over. Still not quite normal thickness but getting there.

Dr. I and I also discussed the schedule for the next portion of my treatment. I will be returning from vacation on 1/14 so here's the overall plan:

Week
------
1/15 tests - cat scan, pet scan, endoscopy
1/22 consult w/Dr. I and Dr. B (the surgeon) based on the tests
1/29 surgery

I have tentatively scheduled the dates for the tests and the consult w/Dr. I and Dr. B and will publish those once they've been confirmed. The actual date of the surgery won't be set until the consult the week of 1/22 but will be for the following week.

So I won't have any evaluations before leaving for FL - would like to have had some indication of progress but it makes the most sense to have the tests done as close to the surgery as possible. For now, it's time to relax and forget MSKCC for the next several weeks (Dr. I's orders :).

cheers,

--Dr. D

... And Then There Were None ...

Had my last radiation treatment today. Yehaw! Afterwards I met w/the Dr covering for Dr. M along w/the nurse I've been seeing since treatment began. All in all, I've dealt w/ the side effects of the radiation pretty well so there wasn't much to discuss. They also performed some blood work on me to check wbc count etc - I haven't got the results yet but if there were any problems they would have contacted me. Didn't sleep well last nite, think I was too excited about the last treatment, so I ended up staying home rather than going to work today. I'll play it by ear tomorrow depending on how I feel but I expect I'll go in for a while anyway.

--Dr. D

... 1 ...

tho I do have to wait until Monday for that last one. Doh!

Overall feeling okay. Yesterday I felt tired and nauseaus and ended up leaving work early. Had a slight temperature in the evening but not enough to have to go to get evaluated (thankfully). Today, I'm doing pretty well - no temperature, bit nauseaus but better than yesterday, and a bit fatigued but better than yesterday. Going to go for a walk in a little while - not sure how far I'll get, it's still kinda cold out today :) Hopefully I'll keep improving through the rest of th weekend and will feel pretty good next week.

Came home yesterday and got a care package from my sister M. Always a nice surprise.

--Dr. D

... 2 ...

One more down. Ran into Dr. M's nurse afterwards, she asked how I was doing, told her I was pushing through it. She told me that the side-effects of radiation generally peak and recede during the first 2 weeks after the final session - luckily I haven't been suffereing too much from side-effects from radiation (probably maksed by the side-effects from chemo) but I don't want to take anything for granted so I'll be prepared for it (e.g. - keep walking, be careful of spicy foods, etc).

Feeling kinda rough today but a pretty standard Thursday overall, bit of cramps being the worst of it so far today. Slept pretty well last night but I think fatigue is starting to catch up w/me again. Plan to take a long walk home tonite to fight it (but not too long - getting cold out). Lorraine is going to drop by this evening w/some chili (and a bit of company) for me - sure appreciate it on these kinds of days. I probably won't be very good company myself but it will be nice to have someone around for a while.

Can't wait for tomorrow - and another one down :)

--Dr. D

... 3 ...

So this morning, when taking my anti-nausea meds, I discovered that I'd forgotten to take my anti-naseua meds yesterday. Result - felt kinda nauseaus yesterday but slept quite well last night. Today, I took the meds but felt pretty nauseaus all day - think that's because I forgot the dose yesterday and it caught up - not something I'd expected. Still, not any worse than a standard Thursday or Friday so a bit of ginger ale (and ginger candy from chinatown) helped alleviate the problem. Still having the standard side-effects too - legs feel kinda like lead, hands shaking a bit, some difficulty concentrating and lack of appetite - but they're easier to deal with knowing it's the last time. Eating's the biggest problem - very easy to skip meals when you're not hungry at all but you ultimately feel worse for it - finally forced myself to eat some beefaroni tonight. I know what ur all thinking - ughh - but it has a good amount of calories in a relatively small amount of volume which is perfect for this kind of situation. Currently drinking some high-calorie cranberry spritzer, also good for this situation. My throat is getting a bit more sore now from the radiation, going to be a race between the number of treatments left and the effects on my throat - hopefully I won't have to go to pureed food but, even it I have to, it shouldn't be for too long and, if starts getting too uncomfortable, they have meds to help deal w/it.

Dr. I's office called this afternoon to schedule my appointment for next week - turns out it will be on Wednesday rather than Monday so I won't have much info from him until then. Plan to ask him about the effects of skipping the anti-nausea meds on Tuesday to see if he has any thoughts about it.

BTW - I've taken up the hobby of watching old music videos from the 80's on YouTube - if you haven't checked it out yet, I highly recommend it :) Well, youtube anyway, you can pick ur own kind of videos.

--Dr. D

4 Left

Radiation treatments, that is. Today's treatment was also delayed as two machines were down for the count - pretty unusual, I've only seen machines out-of-order due to scheduled maintenence up to this point but I guess they have to be pretty cautious when they're dealing with these types of machines (I know *I* want them to be cautious when they're aiming them things at *me*).

Afterwards, I went and got my head shaved again. It was really starting to look fuzzy. The hair is still thinner than usual and a little thicker around the ears so it looks a lot better now. It should start coming in a lot thicker and more even over the next couple of weeks given that I've finished chemo tho I haven't decided what I want to do w/it long-term - still kinda diggin the smooth, shiny look :)

When I spoke to Dr. M yesterday he told me that Friday would be his last day at MSKCC; he's moving to the medical center at the University of Chicago. Defititely a loss for MSKCC, I'm glad he was there for me. We discussed my surgeon, Dr. B, and he said that if he had esophageal cancer, he'd fly back from Chicago to be treated by him. Everyone says Dr. B's the best.

Finally, next Monday I am scheduled to meet w/Dr. I to discuss what's next in terms of scheduling evaluations and the surgery. Will keep you posted on that.

--Dr. D

Chemo Done!

Long day today (started at 9:15 and ended at 6:30) but I got radiation in the morning and (final) chemo in the afternoon. The day went long due to a number of delays - one of the radiation machines broke down which slows things quite a lot and then my chemo meds were ready by 2:30 but they weren't able to get me in until 4 due to a large backlog of people - both unusual occurences but I didn't care so much as I just wanted to get the treatments.

So my wbc count today was at 2700 - more than enough for chemo but still kinda low. The rest of this week is likely to be rough as it will be combined chemo and radiation but, as of next week, I should start getting stronger and feeling better. Can't wait for that :)

Keep sending the positive vibes,

--Dr. D

Treatment Schedule

When Dr. I cancelled my chemo last week, he also took me off of my radiation treatments. Both chemo and radiation can negatively affect your wbc count (chemo much more so than radiation for my particular treatments) and so they don't do either until your counts come back up. On Thursday, they started my radiation treatments again so I only missed 2 days last week (Tues & Wed). Overall, these kinds of minor delays in the treatment don't affect the efficacy of the treament or the number of treatments (for either chemo or radiation).

I'm scheduled to have my final chemo treatment tomorrow and, given how well I'm feeling, I'm pretty confident the my wbc count should be more than enough for me to receive it. As for radiation treatments, I've now had 22 and have 6 left to go. If all goes well, I should get 5 this week (i.e. m-f) and have my last one a week from tomorrow. This week is likely to be pretty rough but things should start improving thereafter.

I'm scheduled to go home for Christmas 3 weeks from today - here's crossing my fingers that all goes well and I can catch that flight.

--Dr. D

Out of the Hospital

And you probably didn't know I was in it. On Tuesday, my temperature spiked to 101.5 and I was concerned that my wbc count was going down rather than up so I ended up going to MSKCC's urgent care center. There they checked my wbc count and it actually was up a bit to 1200 but they were concerned about the fever as it could indicate some kind of infection so, after consulting w/Dr. I, they decided to keep me for a while and run some blood cultures to see if there was anything going on biological-wise. Other than my temperature being all over the place, I felt pretty good so I wasn't thrilled w/being admitted to the hospital but I figured it was the best way to get well enough for chemo this coming Monday. Wed was pretty boring but I was still running a fever and Thursday was similar. By Thursday, they had run the complete blood cultures and they were negative and my wbc count was up to 2200 but I was still having some small fevers so they decided to keep me until Saturday. Luckily, today the doctor decided to let me go, since I was doing so well, as long as I promised to come back if any more problems occurred. So here I am, home :)

--Dr. D

WBC Count @ 900, No Chemo This Week

Once More unto the Breech Dear Friends, Once More

So tomorrow is it - my final chemo session. Everyone's been saying 'already, that was fast'; I guess my perspective is a bit different :). My only concern is that I have had some slight fevers over the last few nights (not enough to get checked out) which usually indicates that my WBC count is down so I'm hoping that it's not down so far that they won't perform chemo because, as I've said time and again, I certainly don't want any delays. Wish me luck.

Thanksgiving was good. A number of people invited me over, which I really appreciate but, ultimately, I decided that, given that it was Thursday, I didn't want to get too far from MSKCC. I try to push myself but I don't want to be stupid, particularly in these last few weeks. Min ended up cancelling her plans so that I wouldn't have to spend the day alone which was really cool of her. Given that it was kinda last minute, I ended up going online and ordering all of the ingredients to make a Thanksgiving dinner and it was all delivered a few hours ealier - there are some things I really love about living in the city :). Dinner came out well and we just ate and watched movies since it was a rainy day. And, as is typical for Thanksgiving, we had way too much food. I debated whether or not to go to work on Friday but when I got up in the morning to go to radiation, I felt exhausted and kinda blech all over. After radiation, I just came home and went to sleep until about 3 at which point I forced myself to get up and go for a long walk in the park as a way to combat the fatigue. It helped but I was still pretty out of it and did run a slight fever that night. Saturday I felt a bit worse actually and the fatigue was really heavy. Eventually I forced myself out of bed so that I could eat a bit and go for another walk but I spent most of the day in bed feeling exhausted to the bone and still kinda blech all over. Finally got to sleep around 2:30 and had a good night sleep - when I woke up this morning I felt much better than I had in the last couple of days and the fatigue had mostly lifted. Met Min and we went to chinatown for lunch - I hadn't really eaten enough over the last few days and it made a huge difference (went to a place called 'Congee Village' - food was good but the service sucked).

Going to get some sleep now, more tomorrow once I've gone for chemo.

--Dr. D

WBC Count Update

Had my white blood cell (WBC) count checked this morning and it came out to be 3300, which is back in the safe range. This means I get to continue my radiation treatments without any delays and that I should be good to go for my last chemo treatment on Monday. This is pretty much as Dr. I had predicted on Monday but it's good to see.

--Dr. D

7 Down, 1 To Go ...

So today I started session 4, round 1. It was a long day as it started at 8 and didn't end until 6. I started by going to radiation in the morning. On Monday, in addition to my radiation treatment, I have to go for bloodwork, and then for a consultation w/my radiation oncologist Dr M. Today, I asked Dr M. why I was having a total of 28 treatments as opposed to, say, 25 or 30 or some other number. He explained that there a point at which the exposure to radiation no longer helps and actually starts making things worse and that they had empirically determined 28 to be the best over a number of years of treaments. A few years ago a comprehensive, nation-wide study was run where half the patients were given 28 days of treatment and the other half were given an additional 20% (i.e. 5) treatments and that the people with the addittional treatments did no better, in fact somewhat worse, than the patients w/the 28 treatments. I asked Dr. M. if he had a citation for the study and it turns out that he ran that study - yet another impressive guy on my team. Overall, for the radition treatments, my throat still feels a bit sore but it hasn't really gotten worse and the fatigue, while there, hasn't been overpowering. Dr M. says that I'm tolerating the radiation well and fatigue in the last week is likely to be my biggest problem.

When I finished w/Dr M., I headed to the other MSKCC campus where I have chemo administered and met w/my oncologist Dr I. The bad news is that my white blood cell count has fallen to 1200. The good news is that it wasn't so low that they couldn't administer chemo and Dr I. expects that it should start trending up. However, I have to go in on Wed morning to have the white blood cell count checked again and if it hasn't improved, they will start me on Neupogen, the drug the use for increasing white blood cell counts. By doing so, my white blood cell count should be fully restored by next Monday so that I can get my final chemo treatment on schedule. I may have to hold off on radiation treatments for a day or two but I'm already scheduled to have Thursday off from it anyway so it shouldn't make much of a difference overall and doesn't affect the efficacy of the treatments (I still have to get the full 28 treatements, so it means tacking on another day on at the end). Other than that, all of my vitals look really good. I gained back the weight I lost in the last session of chemo and my hair seems to be coming back (it's growing in faster, thicker and less patchy since the last time I had it shaved). Afterwards, I got all three meds this week - the 2 chemos and the avastin. Takes a while longer because they have to prepare the drugs after I've met w/Dr I. and then administer them all. Luckily, I had a good book w/me (thanks Mike).

This weekend was a lot of fun. The Drowsy Chaperon was good, particularly the narrator, but I have to admit, I didn't enjoy it nearly as much as I enjoyed Spamalot. On Saturday, Min and I went to see Urinetown as performed by the strollers - it was head and hands above other musicals I've seen staged by the strollers before; all of the singers were fantastic, the choreography (always our weakest point) was way beyond anything we've been able to do in the past, the orchestra was outstanding and kept to a sound level that didn't overpower the cast, and the cast was miked w/o any technical glitches. The biggest problem is what musical to follow that up w/next year - the bar has been raised pretty high. When I got to the theatre, I picked up our tickets and sat down to wait for the doors to open; members of the strollers kept walking past w/o recognizing me and I realized that they hadn't seen me since I shaved my head so I started introducing myself which resulted in a lot of shocked looks :). Went to the cast party afterwards but could only stay for a little while because we had to catch the last train back. Sunday, I slept late and then went out to brunch w/Min to a place that was a major improvement over the 1-fish, 2-fish experience and spent the rest of the day mostly lounging around and resting up for today. All-in-all a very pleasent weekend.

until later,

--Dr. D

Halfway There

Today I had my 14th radiation treatment out of a total of 27 which means I am halfway there and it's all downhill from here. Still handling the radiation pretty well, my throat's a bit raw but nothing significant yet. Chemo starts up again on Monday so those next two weeks are likely to be the hardest. I'm rugging up for it at the moment mostly by trying to keep active and eating and sleeping. Sleeping is the hardest tho, I only seem to be able to sleep about 6 hours a night - I will meet w/both Dr I and Dr M on Monday so I'm going to ask them about possible causes of the insomnia and ways to deal w/it. Still, I can just deal w/it for the next couple of weeks if necessary.

So tonight I'm going to see 'Borat' - I'm a bit dubius about the whole thing but I'm going w/a friend who lived in Kazakhstan for 3 years so it should be interesting to hear his views. Tomorrow night I'm going to a broadway show 'The Drowsy Chaperon' and on Saturday to 'Urinetown' in m/so. Still haven't decided what to do on Sunday so I'm going to give it a think but overall it's shaping up to be a good weekend.

Been listening to satellite radio and loving it. A lot of great songs that I'd completely forgotten about and new stuff that's really cool - at this point I recommend it to anyone who's getting tired of broadcast stations.

Finally watched 'Dinner at 8' the other night - really cool movie. Old style of movie making, looks and sounds like a play - the acting was fun and the dialogue was great.

Gotta head to the movie, wish me luck ;)

--Dr. D

Thoughts on the Tanning Booth

Yesterday I met w/my radiation oncologist, Dr. M. As I've mentioned, I meet w/him every monday so he can evaluate my progress and answer any questions I have - and I had a bunch of questions this week. One of the major concerns w/the combined radiation and chemo treatments is your white blood cell count - mine is currently at 3500 which is lower than normal but still in a reasonable range (normal white blood cell count is anywhere from 4500 to 8000; recall mine was at 5400 when they let me out of the hospital 6 weeks back) and, more importantly, it's been holding steady (in fact, slowly increasing). The cutoff for treatment is 2000 at which point they stop treatment temporarily and work on increasing the counts - this is not uncommon but I really don't want any delays. My weight has also been pretty stable over the last couple of weeks which is also good. They make very precise measurements when setting you up for radiation treatments to ensure that the radiation is focused exactly on the affected areas - if you're weight changes by a significant amount (+ or - 15 lbs) it can invalidate those measurements at which point they have to recalibrate everything. Today I found out that I don't get treatment on Thanksgiving and I was disappointed because it extends my treatment time an extra day. I have to have a total of 27 treatments and, as of today, I've had 12. They will do an evaluation a couple of weeks after radiation treatments have finished. Radiation continues to work even after the treatment stops because the radiation damages the cancer cells and they die off over time (cancer cells, unlike normal cells, do not have the ability to repair themselves) so they wait before doing the evaluation so they can see the full effect of the treatment.

Overall, I'm doing okay so far this week but still feeling a little queazy and fatigued. Not sure if it's radiation or the remnants of the cold I had this weekend but I've been taking it easy. Dropped in to see the master barber yesterday and my head is nice and shiny once again. Looking forward to seeing Urinetown this weekend (no 'ur in town' cracks from theatre members please).

cheers all,

--Dr. D

A Decent Weekend

Felt pretty good on Friday and had a good day at work. During the evening, my temperature spiked a bit and finally got to the point (100.5) that I had to go to the urgent care center so they could check my blood cell count. My blood cell count was fine; turns out I just had a slight cold so they sent me home and told me to take it easy for the rest of the weekend and drink plenty of fluids and eat soup. Slept kinda late on Saturday and my friend Alex came by for a visit in the afternoon/early evening, which was cool. Somewhere around 9:00 on Saturday, whatever was left of my insomnia dropped away and the fatigue finally enveloped me - I drifted off and slept all through the night and have spent most of the day in bed either sleeping or doing soduko. Feel really rested for the first time in quite some time.

No chemo this week but I do continue on with radiation. I should feel pretty good but the third week of radiation is when the side-effects start to manifest themselves so I'll just have to see.

Still planning to go out and have some fun this week while I'm off chemo - hopefully some movies and dinners out. Also planning to go to m/so on Saturday to see the final show of the theatre group's fall musical, Urinetown (and, of course, the party afterwards). Probably head to m/so a bit early so I can hang out for a while before the show.

I'll keep you posted on my progress,

--Dr. D

Feeling Fine

Just a short note tonght to let you know I'm feeling pretty good overall today, particularly for a round 2 Thursday. Still have a little nausea but it hasn't been too bad these last few days. My biggest problem is fatigue at the moment; I haven't slept too well for the last couple of days due to the usual chemo-drug induced insomomnia and the radiation has been adding to that. I find myself getting a bit irritable and am doing my best not to take it out on anyone. Hopefully I'll sleep pretty well tonight since I am off those drugs now and that should alleviate the problem considerably. I have next week off of chemo and am looking forward to it but I will continue to have the radiation treatments; still the week should be a lot easier.

As I said, I'm kinda tired so I'm just going to watch the movie 'Dinner at 8', as recommended on this blog, and the off to bed. Will write more when I'm more rested.

G'nite

--Dr. D

Done Voted

Feeling a bit better today then yesterday - cramps are gone and I'm just a bit nauseas, nothing I can't handle tho. One thing I've heard that is good for dealing w/nauseau is actully acupunture so I'm going to look into finding an acupuntutrist and try to set something up over the next couple of days.

Took today off of work, I had a whole bunch of things which needed tending to, including voting, so I decided it was a good use of a leave day. Voting involved going out to m/so because I still list there as my primary residency (they even tried drafting me for Jury Duty a few weeks back). Since I was out there, I hooked up w/Dave and Jerry for lunch; we went to the irish pub (sorry Peter) and I got some fantastic fish and chips as a way to counteract Sunday's culinary incident.

Of course the first thing I did today was radiation. Going to radiation at the same time every day, I've started to run into the same people in the waiting room and cancer patients actually tend to be pretty friendly people, by and large, as we're all going through this together. The hardest thing about being there every day is that I've started seeing a number of kids who are also going through treatment and it breaks my heart every time. As I understand it, kids have to take lower doses of treatments and so their therapy gets extended out over a longer period of time - I don't know how they do it. As I was waiting today, a kid comes running into the waiting room followed shortly by his mother. A few minutes later, their nurse comes walking in and starts making some small talk w/them which goes something like "So, what are you going to do today afterwards?" to which the mother reponds "Oh, we're going to the zoo in central park - not the biggest zoo but it's close" and the nurse says "oh that'll be fun, it's a nice day for it" and the mother says "this weekend the ronald macdonald house is going to take us to the bronx zoo and I've heard that's pretty big" and so on until they left a few minutes later. When I got home, the first thing I did was to go online and make a donation to the ronald macdonald house charity - kinda figured it help pay for that kid to go to the zoo. It then hit me that, once I've gotten through this, I need to give back to the cancer community by getting involved in some kind of volunteer work or fundraising or activism - it's just the right thing to do. And I expect you all to keep me honest on this.

cheers,

--Dr. D

Vote Early, Vote Often

And take back the country. Enuf said.

The weekend went pretty well. Lorraine made it out on Friday and the beef stew really hit the spot - my grateful thanks to her. On Saturday, Min and I went to the noguchi museum as planned and it was really cool; worth the trip to Queens if u're ever up this way. I hadn't had a chance to eat beforehand so I made my first ever stop at 'White Castle' (been wanting to try it ever since seeing 'Harold and Kumar Go To White Castle') which will likely be my last visit to white castle (not that its any worse than any other fast food place but it's certainly not any better :). Afterwards, we spent the evening watching 'Bridge on the River Kwai' which was also definitely worth the effort.

Sunday was not as spectacular as Friday or Saturday tho. Woke up feeling not so great but spent the morning playing w/some new computer equipment and met Min out for brunch at what can only be described as the worst restaurant I've been to in Manhattan where I had the worst fish and chips that I've ever had (including some dubious freezer-burned fish sticks I once ate while in college). Sometimes you roll the dice and get snake-eyes, I reckon. Avoid 'One Fish Two Fish' if u're ever given the opportnity. After brunch, I went home and was still feeling poorly so I took my temperature and found I had a slight fever (about 99) - not enough to get looked at but enough for me decide to sleep and relax for the rest of the day. In the evening, I watched 'Diner' which has a reputation as a great film but I found it to be long and tedious. Avoid it. Go to white castle instead. Better, watch harold and kumar go to white castle. Still, I did sleep well during the day and all through the night.

Today started Session 3, Round 2. Got up early and went for radiation first then off to the other site for chemo. Dr. I and I spoke for a while but not much to report - things are going well and he's confident that the result of the chemo/radiation/avastin will be good (they're already good - so he's not going out too far on a limb). I actually finished up around 2:30, which was really nice. I feel decent tho not great. I'm a bit fatigued and having some problems w/cramps - nothing major but still not a lot of fun. I expect I'll feel better tomorrow but I'm in for a long evening since I probably won't sleep much tonight (given recent history). So I've got a couple of movies ready to go just in case - comedies this time around :)

That's enough for now, more tomorrow.

--Dr. D

PS - to my sister M, I spent all of the chemo session doing soduko; not sure if I want to say thanks or not tho ... ;)

Session 3 a Lot Like Session 2 (whew)

Hi All - I've been a bit remiss on posting this week, my apologies but I have been trying to keep myself busy and it's worked out pretty well. Session 3, Round 1 has been a lot like Session 2, Round 1. Overall I've felt pretty good just a bit nauseas and I'm getting used to dealing w/that; my concentration is still not 100% but pretty decent overall. Today is Friday, which is generally my worst day. I plan to leave work a little early and take it easy at home tonight. Lorraine is bringing over some beef stew later and will hang out for a while - I really appreciate that.

For the weekend, I'm planning to go to the Noguchi Museum in Queen's on Saturday and hopefully some kind of brunch in Soho on Sunday. Maybe go see a movie if I can find anything interesting. Last Friday, I saw 'The Science of Sleep' - not a perfect movie but really imaginative and definitely worth viewing.

Got some cards recently and would like to thank everyone for sending them - they always puts a smile on my face. My sister, M, sent me another care package. More movies and food and this time I also got 'magnetics' - a magnet based building toy that she had great success with in her kindergarten class so she figured it would be good for me :) And she was right.

I also bought a satellite radio yesterday. Been using an ipod for the last few years but the problem w/it has been that I never get exposed to new music and end up listening to the same music over and over. But even in NYC, I've not been very happy with broadcast radio. T got satellite about a year ago and he's been raving about it ever since (Jerry has it too and also likes it - but he's a Howard Stern fan so it's harder to take him seriously). So I got the unit last night after work and set it up, which is what kept me busy last night, and will be playing with it over the weekend. Anyone who has Sirius Satellite service let me know what channels you tend to like.

regards,

--Dr. D.

Happy Halloween

Yesterday was a bit of a long day - chemo was all 3 meds so that takes a while and then I had my first radiation session. That involved meeting w/my doctor, Dr. M, first and then having the treatment. Dr. M says that the side-effects of radiation don't show up until after the second week so there wasn't much to talk about yet. Radiation is 5 days/week - the sessions only take about 10 minutes but you have to figure about an hour from entrance to exit. I had originally decided to have my radiation sessions in the evenings after work but, upon reflection, I've decided that morning before work will be better so that I can be free after work to walk or go shopping or whatever. They're very accomodating there and on Thursday my time will change from 6pm to 8am.

As long as the day was, I was finished by 5:30 at which point Min and I watched Cold Comfort Farm, as recommended by Peter. It was a lot of fun - tho I wish they'd used Stephen Fry a bit more :)

When I was talking w/Dr. I yesterday, I told him that I was having trouble sleeping the first few nights after chemo and wondered if it was a side-effect of one of the meds. He told me it was likely a side-effect of the steroid anti-nausea drug I take, which matches pretty well up w/the timing. Unless it was really bad, he didn't want me to take anything for it and I told him that was fine. Last night I slept pretty well, hopefully I will again tonight.

Woke up this morning feeling a bit nauseas but the meds did their work pretty well - I was a bit nauseas on and off throughout the day but nothing too bad. This week I don't seem to feel as fatigued and my concentration is better than in previous sessions. Hope it keeps up this way - I'm fighting for it.

Dropped by to see master barber jeff this morning before work. My hair is growing back unevenly, so while it wasn't *too* long it was starting to look bad. Nice and clean again now. My beard has been affected by the chemo as well - not really falling out but growing much slower. It's actally kinda nice because I don't have to shave so often and I haven't had to trim my goatee (tho I'm told it's actaully a van-dyke) - this is one side-effect I wish I could keep (the other being able to lose weight effortlessly - but I think that one is gone now :).

--Dr. D

50% Reduction in Tumor Size

Met with my oncologist, Dr. I, this morning. The results of the tests I did last week show a 50% reduction in the size of my tumor since the beginning of treatment. In particular, the blockage around my esophagus has opened up considerably which shows that my subjective experience of being able to eat more easily was right on the money. I asked Dr. I if this was particularly good result and he stated that patients at this point in the treatment with a 35% (or more) reduction in tumor size have the best long term results. So I said "then this is fantastic" to which he said "yes".

Have to run, more later

--Dr. D

Visiting M/SO on Saturday

I'm planning to head to m/so on Saturday afternoon where I'm going to help the theatre group set up for the new show (which opens the following week) and then I'm going to get together w/Dave and Jerry to hang out for the evening. Hopefully I'll see a lot of you at some point or other during my visit.

I've been having a great week, feeling good and have been trying to do as much as possible while I have the opportunity. Guess I've been eating out a bit too much because I've put on 8 lbs in the last week or so (tho I think Dr. I will be pretty happy about). Just got a care package from my sister GOC - lots of salty snacks along w/a t-shirt and baseball cap. All very cool and much appreciated :) Putting the snacks away until treatment starts up again at which point I'll need them (but will be wearing the hat tomorrow).

Have to get up early tomorrow. My pet and cat scans are scheduled for 8:00 but that will allow me to get to work at a semi-reasonable time. I also have an appointment at 2:00 for a trial run of my radiation treatment (which begins for real on Monday) but that shouldn't take too long.

I'm probably not going to write a new entry in the blog until Sunday evening but I will, of course, be reading and responding to comments.


--Dr. D

Help: Netflix Queue is Anemic!!!

So my netflix queue is running low and what's there is hardly inspiring. I need suggestions on good movies so please chime in. Anything but the horror genre; comedies are particularly appreciated at this point.

Probably my favorite recent movie suggestion was 'Serenity', a science fiction movie w/a good sense of humor (watched the entire 'firefly' tv series, on which it was based, afterwards). My sister sent 'The God's Must Be Crazy', one of my all time favorites which I dragged her to see when I was in high school (she liked even more than I did). And extra credit if you get 'I'm Hysterical and I'm Wet!' (bit of a non-sequitor but I've always liked the way it sounds).

Turns out my test today was an esophogram rather than an edoscopy. This is the test where they take x-rays of you while you drink barium. Nice that I didn't have to get knocked out but drinking barium makes me kinda wish I had been :) I'll post the results when I get them but it probably won't be until next Monday when I see Dr. I.

And now for something completely different, here are the boys:

Survey Says: A Good Weekend

It's been a good weekend. Didn't do a whole lot yesterday but did get out for a while for lunch, a bit of walking around, and a some grocery shopping. Min hung out w/me for the evening - we thought about going out to see a movie but, in the end, I decided I was a bit too tired so we ended up watching a dvd instead (Truffaut's 'Day for Night', which I rather enjoyed). Today I headed out to central park and spent the afternoon trading off walking around and reading. It was a little overcast but the leaves are changing and it was quite pleasant overall.

I still don't feel 100% at the moment but I feel pretty damn good and expect I will feel pretty good this upcoming week - really nice to look forward to. Tomorrow morning I am having another endoscopy and on Friday morning I am having a pet scan and a cat scan (still no dog scan); I am having these tests so that they can evaluate how well I am responding to the treatment. As you'd expect, I'm quite interested in the results too :).

Thanks again for the comments and feedback on the bald vs short-hair issue.

--Dr. D

So Far, So Good

Not a bad Friday; a lot like yesterday but no cramps today and no indication of fever so far. Worked a full day and walked home via Central Park. Hopefully it will be an uneventful, albiet boring, evening.

--Dr. D

Not a Bad Thursday

Today went pretty well, all things considered. Woke up feeling pretty good, just a little nauseas, and was good throughout the morning. After lunch, I got some bad cramps and started feeling pretty tired but, just as I was planning to leave work early, they let up and I felt a lot better so I finished the day out (wonder if is was that burrito I ate). Still feel tired tho - it seems Monday's and Tuesday's I don't sleep very well; feels a lot like having too much caffeine before bed, sleep a bit, wake up for a while, sleep a bit again, etc, ad nauseum. Wednesday's seem better, as the chemo meds work their way out I reckon, but even w/a good night's sleep I'm still in a deficit. Hopefully tonight I'll sleep well again and will feel good overall tomorrow.

I am a little nervous about tomorrow - it being the Friday of session 2 which was when I had trouble last time. I believe I'll get through it alright but I do plan to take it easy and stay close to home tomorrow night just in case. Figure it's the sensible thing to do. As long as all goes well, I'm looking forward to a nice weekend.

Enuf for tonite - enjoy the pictures!

--Dr. D

My Bald Head - In Color!

I like it shaved, cold head not withstanding. Went shopping for hats tonight for a while but didn't find anything I particularly liked - have to stick w/baseball caps for the moment.

New poll: short hair or no hair?

I Am Bald

Master barber Jeff used hot-foam and a straight-edge razor and it didn't take long for the massacre to be complete - no prisoners. At the end, I got the hot towel and it was everything it was cracked up to be :)

Looks good, much improved over the christmas-tree like, quickly thinning, short hair and I won't have to deal w/hair all over the apartment any longer (particularly on my pillows & sheets). My head is pretty white tho - the woman who cut my hair last time was really pushing for the tanning salon option and said she'd go with me. May actually consider tanning but, as T said, I'll have talk to Dr. I first. But I think I'll try a bit of natural tanning first - we do have a few sunny days coming up.

More later

--Dr. D

Round 2, Session 2 Done

Quite a while ago actually - everything went pretty quickly today and I got back home around 2:30, which was cool.

Dr. I and I talked for some time in our usual session before chemo. All of my bloodwork looks good and I'm definitely tolerating the adjusted treatment much better. This week, I'll be keeping an eye on my temperature just to make sure I don't have a negative reaction again like I did in Round 1 Session 2 but we're both pretty confident that things will go well this week.

I also asked him about why I only take the anti-nausea meds on Tues and Wed and then move on to Zofran for the rest of the week (which is good but doesn't seems as effective overall). There are 2 anti-nausea meds involved and the answer is different for each. The first one I take is Dexamethasone - this is a steroid; it helps in the short-term but the long term side-effects, which includes supressing the immune system, make it unusable for more than a couple of days. The second drug is Aprepitant - I need to learn a bit more about this drug but, according to Dr. I, it works for three days and that's it - you can keep taking it but it won't help any longer (my guess is that it is a kind of seratonin blocker and there some kind of receptor multiplicity/adaptation at work, but that's just a guess based on some things Dr. I said).

I have set up an appt w/the master barber for tomorrow @ 9 to get my head shaved. As I mentioned, my hair has continued to fall out faster than republican scandals and my hair is starting to look fairly uneven so I decided to clean it up before starting up work this week. I think it will look good but I definitely need some more hats (and sunscreen). Will post picts when I get the chance. Maybe :).

--Dr. D.

Another Nice Weekend

Friday was a decent day; still had some nausea but worked a full day. That evening I had dinner w/my roommate, which was really cool, and went to bed fairly early. On Saturday, I felt about the same as Friday but I pushed through it - kinda hung out for the day then went to Maplewood in the evening for the Stroller's Gala, as suggested by Peter. It was awesome, great to see so many friends and nice to know that so many of them are following my blog. I got there a bit late but Gene and Betty found me a seat (thanks for ur seat Leon) and got me hooked up w/some food - I ate like a fiend too. After dinner, the entertainment was a bunch of scenes/songs/skits from various plays performed by the membership. I enjoyed *every* minute of it; everyone was fantastic but, I have to say, the scene created by Peter and Bob completely killed me - Bob has offerred to come out to the city in drag to reprise his role if it will help. Afterwards, I talked with everyone until I finally had to leave to catch the train back to the city. After such a long evening, I slept kinda late today and then went down to SOHO for a late brunch w/Min where I ate like a fiend again. Good stuff - anyone interested in brunch in SOHO sometime, drop me a line.

So Round 2, Session 2 is tomorrow. As you can see, last week went pretty well and I am hopeful that this week will go equally well. My hair is still falling out pretty fast - kinda reminds me of a christmas tree 2 weeks after christmas - shake it too hard and thar she blows :p. I figure in a week or two I'll just have to shave it all but that doesn't bother me. The only thing is that my scalp is quite white which will probably blind my coworkers - been thinking about tanning salons but if anyone has any suggestions, I'm listening.

Final thought - most people seem to prefer the short hair to the long, went over particulalry well last night at the Gala. You are all very kind. Or a bunch of Philistines.

Regards,

--Dr. D

Some Haircut Picts

Which is better? You decide ...

Before:



After:

Happy Birthday T (10/12)

In case I forget to call tomorrow. I'm thinking about you bro.

Got a Haircut

Hey All - feeling pretty good. Haven't slept well over the last couple of nights but I don't think it's chemo related and I have a feeling I will sleep well tonight. Been feeling a little nauseous but nothing I can't handle. Kind of strange, I felt so good over the weekend that I have a much better feeling of how the chemo is affecting me now because I am much more aware of the contrast; this actually gives me much better insight on how to deal w/the issues.

Still losing hair so I went and got my haircut yesterday (Tues) at a barbershop near work where a number of my co-workers go. My first time there. I arrived a few minutes early so the master barber asked me if I wanted to wait or to have his assistant cut my hair - a nice looking Italian woman - so I said 'why not'. I told her that I was going through chemotherapy which was causing me to lose my hair and I needed a really short cut. She didn't seem to understand anything other that 'short cut' but that was sufficient. After cutting for a while she said 'you have a lot of hair, you're not losing you're hair' so I explained to her again that I have cancer and that the treatment is causing me to lose my hair. She understood that time and stopped, asked me my name, introduced herself, and we talked for a while along w/the master barber who came over as well. Yet more nice people in the world. I felt kinda bad, tho, like I was exploiting my cancer situation for sympathy or something but I'd brought it up just so she would know what she was dealing with - particularly if large amounts of hair started coming out while she was cutting. She cut my hair the most meticulously it has ever been cut and it is by far the shortest I've ever had it cut (except that time I was 5 and Dad took me to the barber shop for both the first and last time) and it actually looks pretty cool. I also asked her to clean up my beard and trim it down into a goatee, something I was planning to do myself, but she did such an awesome job on my hair that I trusted she'd do a good job there too - and she did - much better than I would have done on my own. The best part was when she cleaned up the hair on my neck - hot foam and a straight razor. My co-workers tell me that having the master barber give you a hot shave followed by a hot towel is the ultimate barber shop experience; I may just have to give it a try next time.

I am now starting to play around w/posting pictures. I'll try to post a picture of my new haircut sometime soon but, for now, here's a picture of my friends Dave (far left) and Jerry (far right) when they came to visit me at my apartment on the Thursday before my hospital visit - enjoy :)

Another One Down

Got home about an hour ago. As I mentioned, I got all 3 meds today and they take a while. At the end, the nurse came in and said "That's a long day for you" to which I responded "Yeah ... but it beats the alternative" to which she said, quizzically, "What's that" to which I responded "Dying" to which she laughed and said "At least you have a sense of humor about it" to which I said "I'm serious, this is much better than dying" and we both started laughing. Always good to have a nurse w/a good sense of humor. I told her this was going up on the blog. So here it is :)

Met w/Dr I. before treatment, as per usual. He explained that, given the reaction I had vis-a-vis the white blood cells as well as some other minor problems I've had, the culprit was most likely the Irinotecan (one of the two chemo meds) and that he would decrease the dosage slightly which should 1) prevent me from having a recurrence of the white blood cell count problem and 2) generally improve my day-to-day experience w/chemo. I'm all for that.

I also talked to him today about travel/vacation during the 6 week period between the end of the chemo/radiation treatments and the operation. He thought it was a great idea to take vacation then and that they would coordinate w/my plans. He recommended I wait 2 weeks after finishing treatment before vacation as it would take that period of time to fully recover from the side-effects of the radiation and I would probably prefer to have vacation when I was feeling my best. So my plan is to take about 3 weeks off from work and go home for the holidays (Christmas and New Years). While I'm there, I'll not only be able to spend time w/my family and friends but also be able to spend time outside getting some exercise (biking, kayaking, swimming, hiking, camping, and, of course, bowling) all of which will help prepare me physically and mentally for the operation.

Well, that's enough for today. I'm getting a bit of cabin fever so if anyone is up for a visit sometime in the near future, give me a holler.

regards,

--Dr. D

P.S. - bought a 'Livestrong' wrist band today at the hospital gift shop. Apparently they are no longer trendy/fashionable but it seems to suit me just fine.

P.P.S - finished rereading another Murakami novel in chemo today. Haruki's been a fine companion getting me through these sessions.

Round 2

starts tomorrow. I'm getting all 3 meds so it's going to be a long day. yin and yang, man.

Had a good weekend, been feeling really good since I got home on Thursday. Took Friday off from work to take care of some things what needed taking care of (including a bunch of food shopping). Friday night I went out to dinner at a place I've gone to quite a few times. Last time I went there was just before I started chemo and I was really struggling to eat that night because swallowing had become so difficult; Friday I ordered the same thing I had that previous time and was able to eat it w/o any difficulty - it was awesome and clearly shows that the tumor is shrinking. Saturday I just took it easy and laid around the apartment all day reading, watching movies, and eating. Kinda felt I should have taken more advantage of feeling well but it was a good day all the same. Today I took care of a bunch of paperwork and such in the morning and went to central park in the afternoon. Walked around the park for a while and then sat down and read for a couple of hours. Awesome day, lots of people outside having fun, it was just nice being part of it all for a while. My goal this weekend had been to gain a bit of weight and I seem to have been sucessful - will get the official word tomorrow when they weigh me at the Dr's office but my scale shows I've gone up 2 lbs (really weird experience to want to gain weight).

I'm starting to lose my hair. It doesn't seem to be coming out in clumps but rather evenly all over but there's sure a lot of it. Losing my hair doesn't bother me except that it's getting all over the place (you should see my hair brush), particularly since it is so long. I plan to get it cut short sometime this week, probably on Tuesday which should address the problem. If it gets too thin, I'll eventually just shave it all. Planning to buy a beret this week as well ;)

That's pretty much it for now, I'll try to post tomorrow and let you know how chemo went. Until then,

--Dr. D

I'm Getting Out

My white blood cell count came in at 5400 so they are going to let me go home today. Just a matter of paperwork at this point. Can't wait for them to take this IV out of me so I can walk around w/o dragging it around w/me.

I'd like to thank the various people who helped me get through this one. My mother, who was visiting at the time, who stayed here w/me through my first couple of days. Min, who helped me get in here on Saturday and has visited every day since. Lorraine, who put my mother up and ferried her back and forth. My sisters and father, who called frequently (multiple times per day, in some cases) to keep my spirits up. Thanks everyone.

I'm feeling good today and looking forward to a weekend of feeling good before going the next round on Monday. They weighed me the other day and the good news is that I haven't lost any weight this week - gonna try to gain some this weekend ;)

Looks like it's time to go,

--Dr. D

Still in the Hospital, but Feeling Much Improved

And I now have my laptop and internet access.

So a quick recap of what's happened over the last week or so.

As I've mentioned, my chemo treatment is 2 weeks on/1 week off. The reason for this is because chemo reduces your blood cell counts and it's cumulative such that the second week is worse than first in that respect; you get the third week off so that your body can recover and build up blood cells. One thing that can happen, particularly in the second week, is that your white blood cell counts can get dangerously low, the main symptom of which is a fever. This is not so much dangerous in-and-of-itself but rather because you now effectively have no immune system so you can get sick very easily.

Last week, my second week of chemo was going pretty well. Thursday I was a little tired and Friday a little queasy but, all in all, nothing too bad. The only thing was that on Friday I felt a bit chilly all day at work. After work, I ran a few errands then went home and went to bed early. That night, I had chills and some really weird dreams, both of which were probably caused by fever. Saturday, I felt pretty decent in the morning but in the afternoon the fever returned so I called MSKCC where the doctor told me to go to the Urgent Care Center and get checked out. Luckily the Urgent Care Center is only a block from where I live so I was able to get there pretty quickly/easily. There they determined that 1) my temperature was now 103, 2) my white blood cell count was dangerously low, and 3) I was going to be staying for a while. They put me in isolation to keep me from being exposed to any illnesses, started pumping me full of antibiotics, and gave me an injection of something which stimulates white blood cell production. My temperature stayed around 103 most of the night but started falling eventually early Sunday morning and was eventually back to normal around Sunday afternoon and I was feeling pretty decent (though still tired).

Since then, it's pretty much been a waiting game. I haven't had a fever and the blood tests have been negative for any evidence of infection. My white cell count has to get above 1000 before they will release me (and 1500 before they will do chemo). On Saturday, my white cell count was down to 300, Sunday it went up to 400, Monday to 500, but yesterday it went back down to 400. Today, my white cell count was measured at 1300 - so it came back pretty strongly. They plan to keep me for another day or so to make sure that it doesn't dip again but everything's looking good.

I talked to my oncologists office yesterday. Dr. I has been monitoring my progress and plans to continue w/my second round of chemo this Monday. He will adjust the treatment somewhat so that it does not have the same impact on my white cell count - I'll be talking to him more about that on Monday. I was relieved by this because, despite the problems, each day of treatment gets me one day closer to being cured and that's the important thing.

Quick Update

All This is Dr. D's sister. Just wanted to let you know we had a slight set back this weekend. Dr.D's white blood cell count got low (a common side effect of Chemo) He needed to be hospitalized to bring down a fever and help avoid any additional infection. His fever is back to normal today, but they are going to keep him in the hospital a few more days to make sure his white blood count gets back to were it should be to fight infections. Please keep your good thoughts and prayers coming. Dr. D's family appreciate all the love and support you provide to him.

No News is Good News

This time anyway. Yesterday went well overall. Had a slight bit of nausea but a bit of ginger ale helped alleviate it (thanks for the suggestion Min). Worked all day then came home and rested. Getting a little bored actually. I've been eating and my weight has started to come back up already and I'm feeling good this morning after a nice sleep.

Dave & Jerry, some good friends of mine from Maplewood/South Orange (M/SO), are coming out on thursday night for a visit. There is an Italian restaurant/bar where we all used to hang out quite a bit (they still do), the owners of the bar have been very supportive since they heard the news and will be supplying food for them to bring to me. A lot of good people in this world.

Got to head to work,

--Dr. D

Home and Feeling Alright

Got into chemo around 1:45. The first thing they do in chemo is put in an IV to hydrate you w/a liter+ of fluid and then hit you with a lot of anti-nausea meds to make sure you tolerate taking the chemo drugs and then they administer the chemo meds one at a time. Each of the chemo meds takes about a half hour and there are two of them that I am taking, Irinotecan and Cisplatin. This week I didn't get the experimental drug, Bevacizumab (aka Avastin), as I only get that every 3 weeks. This cut 90 minutes off of the overall time and I finished up around 4. On the way home, I stopped by the grocery store and bought a whole bunch of stuff. Since I got home, I've been resting and eating like a pig. Feeling pretty good, all things considered.

I'd meant to give more of a summary of my treatment this last weekend when I had some time but that didn't work out too well this time around so I'll give a quick overview now. For the chemo, I'm 2 weeks on/1 week off over 12 weeks. This means next week, no chemo (yeah). At week 6, they will run some more tests to see how I'm responding to the treatment and then they will add in radiation treatments - radiation will be 10 minutes/day, 5 days/week over 6 weeks. I will be getting the experimental drug (Avastin) every three weeks during this time frame as well. It doesn't have the side-effects that the chemo drugs have and is pretty well tolerated overall. Dr I mentioned today that he has been trying to get it for clinical trials in the treatment of this cancer for the last 2+ years but FDA approval was slow in coming despite its positive results in similar cancers - he just got approval in August.

Swallowing has already become easier for me and I asked Dr. I if this was likely just placebo effect. He said that, based on trials w/other cancers, the chemo & Avastin had quite likely shrunk the tumor considerably already. It'll be interesting to see the results when they retest me at the end of week 6.

All the best

--Dr. D

Waiting for Chemo

Currently at MSKCC, just saw my oncologist, Dr. I, and will be getting my chemo treatment shortly. Dr. I and I discussed my first week - he thinks I'm responding well already and gave me some advice on how to deal w/some of the problems I was having this weekend. According to my blood tests, I seem to be tolerating the treatment well and the only negative is that my weight is down this week which pretty much happened over Frdiay and Saturday. Dr. I thinks I'll bounce back from that by making some slight adjustments to my diet and encouraged me to stop drinking just water (in such large quantities that I feel full) and instead start drinking more fluids w/calories in it - he recommended soy shakes in particular; I plan to try them and a bunch of different things as well.

More when I'm done w/my treatment.

--Dr. D

Better Today

So I'm feeling much better today than yesterday. Spent most of yesterday laying in bed going between sleep and watching star trek and the matrix. Min dropped by in the afternoon w/some groceries and hung out for a couple of hours, all of which was awesome of her. I wasn't that hungry or much good company but it was nice to have someone there for a while.

In the late evening I finally started feeling better and was finally able to concentrate for a while. This morning, I got up, showered and shaved which I really needed. I also went and did a bit of shopping, including stopping by a mexican place nearby where I did takeout on some tacos which didn't survive long - I was hungry. I spent most of today in bed still but feeling much better and eating throughout the day.

My next chemo session is tomorrow - not sure what time but will call in the morning to find out (should be in the afternoon). Hope to post after that depending on how I feel.

Thanks for all the calls & comments

--Dr. D

Rough Day

Hi All,

Yesterday wasn't too bad, felt a bit like I was hungover most of the day but everything went pretty well.

Today was s different story; felt good this morning but shortly after I got to work started feeling horrible. Took some of the meds but they only helped so much. Went home around 4, laying down felt a lot better. Min dropped by around 7:30 w/some pizza which was awesome. Bad news - didn't feel good today; Good news - did manage to eat and drink and am doing okay. Very tired at the moment, heading back to bed. More later.

--Dr. D

Quick Update

Appreciate all of the comments and calls - keep 'em coming.

On Monday morning I weighed 195lbs, when I got back home I weighed around 200lbs - that was all the fluid they had pumped into me (and I'd made several trips to the bathroom while they were pumping it into me). I was tired but not really sleepy so I ended up awake until about 3:30 - making plenty more trips to the bathroom (the plastic trash can started looking really tempting around 2am :p). Guess it didn't help that I drank an extra liter of water and gatorade but one of the meds can cause kidney damage if you don't drink enough fluids (i.e. 2+ liters) for the 2 days following treatment so I figured too much wouldn't be a bad idea. I had some slight cramping that evening but I think it was the gatorade rather than anything else so next week I will stick to straight water on Monday night.

Tuesday I went to work and felt pretty good most of the day. Drank over 2 liters of water while at work and, as such, got plenty of exercise walking. Dr. S called to see how I was doing after my first session. I had previously sent him this blog address and he's been reading it - like I said he's a stand up guy. He thinks the blog is a great idea, a sentiment that many of you have also expressed. When I got home, I was exhausted so I took a nap for about an hour then forced myself to get up and make some food (thankfully my sister called or I might have just skipped dinner). I was slightly nauseas but fell asleep pretty quickly; up a few times but a good, long sleep overall.

Today, despite the good sleep, I was a little foggy in the morning. Not sure what that's about but I was pretty good for the rest of the day. Drank a lot again.

While the nausea is mostly under control, I did have it slightly for most of the last two days which really cuts down on my appetite. To deal with this, I've avoided large meals and have taken to eating smaller snacks throughout the day - lots of vegetables, fruit, nuts, and oj (they provide this for free where I work so it works out pretty well) plus some kind of protein at night (had me a bubba burger tonight). I think I need to track calories a bit better just to make sure I'm getting enough to eat but I'm pretty sure that I am.

Tommorow I stop the meds I've been taking for the last two days to counteract the sideffects of the chemo meds. There's another med they've provided for me to take as needed - hopefully I won't need it but I'll have it with me just in case.

Going to try to hit the gym in the morning before work - just a bit of cardio but I think it will help me overall.

Good Night All

--Dr. D

Chemo Session I - A Long Day

Today ended up being a lot longer than I'd expected. At 8:30 I had to get an esophogram which involves drinking barium while they take xrays. The barium was much tastier than the crystal lite. After that, I met with my doctor and we went over the treatment plan and the cat/pet scan results. The good news is that the results confirms my cancer at stage II, still very localized and no evidence of it having spread to any of the local lymph nodes. I then had to have an EKG done, a urine test, talks w/various nurses/fellows on the possible side effects of the drugs I'll be taking, followed by a lot of waiting while they got the results of the various tests. Eventually around 5, I finally started the chemo - it involves my getting 3 different medications via IV. The first two take half an hour each to administer and the third takes an hour and a half. There are potential side-effects during the administration of the IVs but I didn't have any, which is a good sign. I have some drugs that I take over the next 2 days to deal with possible side-effects of the drugs - if I have any negative side effects, they are likely to show up on Thursday after I'm off those meds. Future sessions will go a lot faster as 1) I won't need to do any of the tests and 2) they'll increase the flow of the IV's so that drugs are adminstered quicker. Tomorrow I'll give a more detailed report on my treatment and it's timeline.

A number of you have expressed distress at seeing me go to chemo on my own. To me, it feels completely natural to do so and I experience no distress on discomfort at being on my own during the treatments. What I do appreciate is the support, messages, and phone calls during the in-between times. This weekend was a bit tough, due to the unknowns, but I made it through pretty well thanks to my friends that visited and my friends/family that called - I have not felt alone at all.

All the best,

--Dr. D

A Note on Comments

At the end of each of my posts, there is a link called 'comments'. If you click on that link, you will see comments that other people have made on that particular post along with a place for you to post your own comments. You can post anonymously which simply means you don't need have to register with the website or do anything else to post (i.e. it's very simple) though you should sign you name at the end so that I know who you are.

I mention this because I want people to comment on my posts. The point of this blog is to create a community of support - not just for me but for all of us. This blog not only allows me to broadcast to you what's going on with me and how I'm feeling about it but also, by way of comments, gives you the ability to communicate your thoughts and feelings to me and everyone else who is pulling for me. It's very cathartic and I encourage you to give it a whirl.

As Red Green says "remember I'm pullin' for you; we're all in this together"

Chemo Starts Tomorrow (Mon 9/18)

Chemo starts tomorrow. I have to be there at 8:30 and, according to the schedule, will see my oncologist, Dr I., at 9:45, followed by the treatment at 11:15. Not sure why the long wait but I'll post here as soon as soon as I am able. At my 9:45 meeting I should be going over the results of my pet/cat scans - I feel fine about starting the chemo but will feel a lot better after getting the results.

Speaking of the pet/cat scans, that was quite an experience. I arrived at 4:30, a bit early, and filled out the obligatory paperwork. The nurse then took me to a prep room and asked me to remove my shoes so she could get my weight and height. I told her I prefered doing my height w/my shoes on as I liked that result better but she told me that she had to take my height w/my shoes off to get a consistent reading - she had no sense of humor whatsover (but was nice all the same). Next, I got to sit in the prep room for a while where a different nurse came in to inject the solution for the pet scan into me. It's a radioactive dye and I aksed her how long I would glow in the dark and she said I shouldn't glow at all but, if I did, give them a call - she had a good sense of humor. I thought that was it been then she came back w/a liter of the vile stuff I had to drink for the cat scan. Basically a solution of water, iodine, and raspberry crystal lite - I like water, can stand iodine, but that crystal lite garbage don't not go down so easily; blech. I then had to wait for an hour for the chemicals to get to the various parts of my body before starting the scans. The scans themselves were simple - the pet scan took about a half an hour during which time I fell asleep and the cat scan only took about 10 minutes. Afterwards they gave me a card stating that I was going to be radioactive until 9/16, in case I got stopped by the police in the subway, train station, or airport; Its a great card and is going in my scrapbook. They also recommended drinking a lot of water over the next couple of days to flush the chemicals out of my system.

According to what I'd been told (and read), the pet/cat scans are not supposed to have any real side effects but, when I was done, I felt really fatigued. Could have been that I didn't get much sleep the night before but it was all I could do to eat, post a quick message here, and crawl into bed. That night I had a bunch of nightmares; after each I would wake up and have to go to the bathroom. The next day, I was still pretty exhausted and didn't get much done at work but started feeling a lot better towards the end of the day and a bunch of friends visited w/me on Friday night which made me feel even better. Saturday I just kinda lay around, watched movies, and slept. In the evening, I went out to Maplewood where I hooked up with some friends for a show followed by some dinner. It was then that I really felt myself again.

I can't say unequivocally that the pet scan was the cause of my fatigue but my first cat scan didn't give me any problems and I gotta figure that radioactive dye running through you brain has to have some effect. The card said the radioative dye would be completely broken down by Saturday and it was Saturday evening that I felt fine again. Of course, it could all just be in my mind.

Done with the Scans

No results yet. The technican said they'd be available in the next 48 hours.

Pet Scan & Cat Scan

It strikes me that there must be a dog scan out there somewhere, probably involving a long, wet, cold, dog-nose like probe - surprised I haven't been asked to have one yet (and don't even get me started on ferret scans).

I have my dual scans tonight at 5. I am supposed to be there at 4:45 so I'll leave work around 4:15. I am not allowed to eat or drink for 6 hours before the scans so I haven't had anything since 11. While I did my best to stock up beforehand, I'm getting hungry now. And thirsty. Of course they have this really vile stuff I have to drink gallons of just before the exam so that will take care of my thirst and likely my hunger too.

I believe that the results should be immediately available, at least that was my experience with my previous cat scan. I don't believe that the scans will be too physically traumatic so I hope to post the results sometime this evening - likely after I get something to eat - so stay tuned.

The Strollers

The Strollers, the theatre group I'm a member of, had their first general meeting of the new season last night. At the end of the meeting I announced that I had been diagnosed with cancer, would be going through treatment this fall, and having surgery in early January. I'd debated, up to the moment I did it, whether this was a good idea or not but the response was tremendous. For over an hour after the meeting was over, the members, some good friends, some who've I only known in passing, talked to me and gave me their support. A number of the members are cancer survivors and had a bunch of insights to give me that I really appreciated.

My hair, which I've grown out, got mixed reviews. People either really loved it ("I never knew your hair was so curly, it's awsome") or really hated it ("it's good to see you, even with that hair"). My weight loss got overall approval - I mentioned that one of the things that sucks about the cancer is that I worked hard to change my diet and lose weight slowly and now everyone's just going to think it's the treaments. dammit. :)

Thinking about cutting my hair short so that if I do start losing it during chemo (15% chance) it won't be such a noticable change. On the other hand, part of me says to roll the dice and see what happens.

For Advanced Users: Atom Feed Available

There is an atom feed available for this blog at:
http://beta.blogger.com/feeds/34239078/posts/full

The comments feed is available at:
http://beta.blogger.com/feeds/34239078/comments/full

Modern newsreaders that support the atom format can subscribe to this feed and easily browse the content and get automatic updates. There are a number of atom-enabled newsreaders available, see AtomEnabled.org for a list.

The one that I've been using is 'sage' which is a plugin for firefox. It's pretty cool.

Upcoming Appointments

September 14th, 5pm
I am scheduled to have a cat scan and pet scan done. These scans are to supplement the endoscopic ultrasound I described previously in ascertaining how far the cancer has spread.

September 18th
Chemotherapy begins

Endoscopic Ultrasound Results

Last Friday, the 8th of September, I had an endoscopic ultrasound. This procedure was to determine how far my cancer has spread; it is highly accurate, on the order of 90%+, in detecting cancer growth in tissue but only somewhat accurate, on the order of 70%, in detecting cancer growth in lymph nodes.

My results were good - the tumor is still highly localized. While it has spread through most of the layers of the esophagus, it has not moved past it and does not appear to be in any of the lymph nodes. As I understand it, this is stage 2 cancer (or T3N0M0 for those who understand - I'll explain it's meaning in another post).

Google Group hmurakami49 Created

I have just created the google group hmurakami49. If you subscribe to this group, you will get email each time I post a message to this blog. To join the group, go to:

http://groups.google.com/group/hmurakami49

and follow the instructions on that page. You will need to have or create a google account or gmail account in order to join this group, instructions on how to do so are included on the above link.

A Simple Introduction

Alright, most people won't understand the name of this blog or the first post but that's okay, I'm trying to make it a bit obscure.

I went back and forth on how describe my ongoing experiences w/cancer online vs my concerns about privacy issues. In the end, I decided to create this blog and have gone to some trouble to create it anonymously; I ask you to not use my name directly here in your comments or to send me email directly referencing this site.

I plan to post pictures and to give ongoing information as it comes. I also plan to write an entry (almost) daily once I start treatment - I don't know how detailed it will be but I'll appreciate responses.

regards & thanks for reading,

Haruki

PS - hmurakami stands for Haruki Murakami, my favorite author. His main characters tend to be someone who has lost his way in life and must pursue a long, arduous, surreal quest to find his way back to his life. I feel a lot like that at the moment. His characters are aided by a wide assortment of friends and family - generally really strange folks - that help him get reconnected to the real world. This also remind me of myself and you :)

The sheep chase is on ...

and it's either him or me