Update on Upton's cancer

08 March 2010 (Monday). My cell phone stopped working because I was clumsy and dropped it in the toilet last Tuesday. It filled up with water pretty fast. I fished it out anyway (clean water) but it didn't work. Bob and I went to the cell store a couple days later and it started working (somewhat). Enough to save my phonebook to the SIM card. She told me it was still wet, but that she had a pretty good recipe. Just sandwich the phone beteen two layers of raw rice (Jasmine works the best for her) and it would be dry by morning. Seems the rice grains suck the water out. I thought it was a good idea to try, so Bob set it up for me on the ledge between the 2nd and 1st floors. Alas, about 15 minutes after he left, I clumsily knocked the bowl of rice off the ledge. Luckily another person was also in the house and picked up the mess. The phone didn't work after that. I had to get a new phone anyway. I now call my ledge the "ledge of death." Many things have fallen and few survive the fall. One would think I'd learn.

I now have a lot of trouble opening pill bottles because of the child proof caps. Some of the large bottle are on just a bit tight. I now have a rectangular hospital tub and use a big wrench to beat away until the cap cracks. That seems to work the best. I am told by the pharmacy that only the doctor's orders can get rid of these types of caps. I plan to contact the doctor shortly and have a standing order barring child proof caps (replacing them with screw-top caps) from my pill bottles.

11 March 2009 (Wednesday). I finally figured out how to go back in and change things a bit, so here I am. Internet technology is always screwing with something (usually minor but its major to me). I've been in the hospital about 3x since last year, but nothing real important. Thank goodness for insurance. If they made those beds 4-5 inches longer it would sure help. Vertigo every 4-6 weeks has been my biggest problem since they took the cancer from the cerebellum. I generally sit in my wheelchair and doze rather than risk being sick on days that I teach. Also, once again, I'm battling local and confusing hospital biling practices.

I've also been asked, now that I've been a cripple for a couple of years, what my most important challenges are. Sure, I can list them in no particular order if you like:

  • hospital billing procedures
  • heavy doors with spring loaded hinges
  • ice
  • ramps
  • low toilet seats
  • area throw rugs
  • strong winds
  • short beds
  • uneven sidewalks
  • child proof caps
  • small print
  • non-handicapped students using handicapped facilities
  • handicapped transportation that isn't

    26 December 2007 (Wednesday). I'm back at work and am glad the holidays are over. But, I did have a lot of fun in New Mexico over Thanksgiving. My sister (a physicians assistant) made me get a flu shot and get tested for diabetes. A lot more fun, though, was that I went to a Lobo's basketball game with my brother in law David and my old (and still current) mentor Don Duszynski. It was a fantastic game and pretty thrilling being in the "Pit" again. I sat in the wheel chair area, which actually offers a pretty good view. David and Don sat next to the University president (David Schmidly) and Governer Richardson. I've never met Bill Richardson, but I did meet Dr. Schmidly some years ago at a "Derby Days" party. I was very impressed with him (he's a mammalogist you know) and I don't think UNM could have done better.

    I returned back to Manhattan and the Christmas rush. It's often difficult shopping when you're in a wheel chair and have to rely on friends or the limited transportation system of a small town. And, I came back to my number one nemesis; bizarre billing practices for local medical charges. The insurance company has refused to pay for some medical charges this time because the hospital made out some of the paperwork incompletely. The hospital's solution has been to simply bill me directly instead of resubmitting the forms properly. Total to date is $11,200. I know it will get worked out eventually, but it is certainly an aggrevation. I wonder how many people end up paying for covered medical expenses because of administrative screw-ups. I've concluded that administrators, and not just the cancer itself, play a large role in longevity following cancer therapy.

    During the second week of December, Don Duszynski called and informed me that Terry Yates had passed away on December 11th. Terry was a University of New Mexico Professor specializing in mammalogy, eventually acquiring the position of Vice Provost for Research and Economic Development. In the late 1970's, I took Systematic Biology from Terry and went on one of his memorable fieldtrips to the Lubbock area. In those days, Terry's field trips involved several coolers of beer and a .22 rifle to acquire dinner (nowadays the lawyers would rip you to shreds). He was instrumental in determining that rodents were the source of the four corners Hantavirus outbreak in 1993, and worked on rodent systematics and rodent/virus interactions thereafter. I saw Terry over the Thanksgiving Holiday when I visited New Mexico and we were able to talk about brain cancer for a few minutes. Although he was diagnosed with a type IV glioma/glioblastoma and the surgeons couldn't get it all, he was in pretty good spirits and eager to try some new and experimental monoclonal antibody procedures. We all wish he could of lasted longer and been able to enroll in the experimental treatment regime.

    I thought some of you might be interested in more pictures. I especially like the one that shows the crater in my brain from tumor #2 (below, right). If you can believe it, normal displaced brain filled right back in where giganto tumor #1 originally resided. Other than some residual swelling, it looks pretty normal (not shown). But, repeated surgeries on tumor #2 have resulted in my walking with a walker (actually a hemi-walker) or sitting in a wheel chair. It's unlikely that I will improve much more. However, it does not seem to affect my responsibilities at work (other than I tend to get to places more slowly than before, have difficulty getting through heavy doors with spring-loaded hinges, can't go up or down stairs easily, can't write very well, must use the computer one handed, I don't do well at all getting up from low toilet seats, and I have some minor short term memory problems). I guess the upside about all of this is that Southwest airlines treated me and my wheel chair like royalty over Thanksgiving.

    Myself (sitting) and the neurosurgeon, Dr. Greene (he has a different suit for every day of the week), following brain surgery number 2 (of 3 total)

    A December 2007 MRI showing the hole in my brain due to pesky tumor #2

    01 November 2007 (Thursday). Nothing ever goes as planned. Surgery on pesky tumor #2 was completed in late August and histology showed only necrosis, not cancer. That's the good news. After 4-5 weeks of recovery and inpatient physical therapy, I went home only to fall down the stairs 8 days later. I sprained my right ankle, twisted my knee, and broke my fibula. Overall, I had very little pain due to the cancer surgeries but the sprained ankle was nasty for several weeks. I just got out of inpatient rehabilitation last week and am confined pretty much to a wheel chair or walker. They had to bring in a substitute to teach my classes this semester. I decided to have a stair glide put into my house last week so I now ride up and down my stairs. Those things are not cheap. The initial estimate was $3,200.00 but the final cost was $3,900.00 (not covered by insurance); and I keep having problems with the swiveling of the stair glide chair. I've decided to simply go to New Mexico for about 10 days over Thanksgiving to recuperate and have friends and family wait on me.

    12 August 2007 (Sunday). Alright, here is the latest. I went down to Merida, Mexico for a meeting in late June and had a great time. However, I started to notice my ability to walk and use my right arm were progressively getting worse (especially when I was walking through the uneven surfaces of Chitzen Itza, an incredible Mayan site). Once I got back to Manhattan, I had a seizure during the night (July 11th) and lost the ability to use my leg from the knee on down. They did an MRI and have decided that brain tumor #2 was either growing back or becoming necrotic. So, I go to Omaha on the 20th and another brain surgery is scheduled for the following morning. I hope to be back in Manhattan within 12-14 days of the surgery like last time. I plan to start teaching parasitology again (but 2 weeks late into the semester). I guess the good news is that the latest round of anti-seizure medicines seem to be working very well and I feel relatively normal (500 mg dilantin, 1000 mg keppra, and 12 mg dexamethasone daily).

    17 May 2007 (Thursday). I had another brain surgery in late April and they scooped out a bit more of my brain. It was indeed a necrotic lesion, with a few viable cancer cells mixed in. I spent 7 days in the hospital at the Nebraska Medical Center, then 5 more days at Immanual hospital for physical and occupational therapy. Although the hospital rooms themselves weren't quite up to those at NMC because of construction, the therapy and staff at Immanual were excellent. I made a lot of progres and a bunch of new friends. I'm now back in Manhattan undergoing occupational therapy a couple of times a week, and this week I regained the ability to write (slowly) with my right hand. Still can't type or brush my teeth with it though. I won't mention some of the other things that are difficult without total use of that arm.

    The first evening I stayed at Immanual was absolutely miserable. The other guy occupying the room snored terribly and there were no more free rooms. However, following that miserable first night, the nurses wheeled out an extra bed and set it up in one of the conference rooms. Extra pillows and blankets. I slept great the next 4 nights.

    29 March 2007 (Thursday). It's baaack! Had a seizure two weeks ago (mentioned below), and a mild (arm only) seizure last Tuesday and another yesterday. The dilantin seems to help a lot, just not 100%. Went to Omaha today and the MRI showed what appears to be tumor #2 re-growing on the left side of the brain. The lesion appears to be necrotic, perhaps with a few cancer cells mixed in. I go back to Omaha in two weeks, consult with both the neurosurgeon and radiation specialist, then figure out what to do. No big deal, just getting tired of all the trips up north.

    16 March 2007 (Friday). Things had been moving along pretty smoothly; until Wednesday evening. I was doing some minor remodeling in one of the bedrooms downstairs when I had a seizure. It was, perhaps, one of the spookiest experiences of my life. My right hand started jerking uncontrollably in sort of a rhythmic fashion, which quickly progressed up my arm. I managed to get to my daughters room and was barely able to blurt out "911." I took a couple of steps out of the hallway and into my bedroom when my whole arm and shoulder went into tetani. The whole right side of my body then went numb and I collapsed onto the floor. Luckily I had just vacuumed a couple of days previously (why is it "vacuum" rather than "vacume"?). At that point I was unable to move or speak; my body was seized up and some sort of autonomic reflex kept me literally gasping. There was no pain. In the meantime my daughter had not only called 911, but had the front door unlocked and made a couple of other calls. I was really glad to have her there even though I was unable to communicate with her. She was a bit un-nerved of course but still handled everything like a pro. I was fully aware of everything but just couldn't move. I pretty much was waiting for my breathing to cease and the lights to go out (if you know what I mean) when the seizure suddenly stopped and my body relaxed. I could then move my legs and left arm a little, but not my right arm nor could I speak anything intelligible. Shortly thereafter the EMTs showed up and soon I was able to speak well enough so that they could understand me. I estimate the seizure lasted only about 3 minutes maximum, and the paralysis and weakness fully ended after about 20 minutes.

    After a very bumpy ambulance ride (streets are a little trashed from the snow plows this winter) I made it to the ER where they did a CT scan. No signs of brain tumors or other lesions. Anotherwards, no one knows why I had a seizure. After another hour of waiting in the ER with only my daughter and ex-wife around, they released me. There were 4 code blues that evening. Out in the waiting room there were about 8 friends and friends of friends that showed up waiting to see how I was. In my Spongebob boxers I greeted them all and was very happy to see everyone.

    Yesterday my ex- drove me up to Omaha. I really appreciate her doing that. The feeling right now is that there is probably some scar tissue that triggered the seizure and we may never know the precise cause. I'm now on dilantin to control seizures, and since 6 months had gone by I was taken off warfarin (coumadin). I go back next week for an MRI and EEG and who knows what they will find. Next week is also Spring break, so at least I won't miss any classes. Just in case though, I spent this morning putting all of my class powerpoint presentations on-line in case a substitute has to be brought in.

    One big drawback to this is that I am not allowed to drive for 3 months. So, my daughter and some of my friends are going to have to lug me around. By the way, yesterdays high point was that I found out that I've lost 8 lbs since my last doctors visit 2 months ago.

    26 September 2006 (Tuesday). I spent a total of 10 weeks on antibiotics and surprisingly enough the infection in the bone flap over my right sinus seems to have gone away. However, shortly thereafter, I developed a blood clot in my left lower leg. Seems my clotting time was too fast. My leg became really sore and swollen. After a procedure called a "Doppler," (essentially a sonigram of the leg) they placed me on oral warfarin to reduce clotting. I also had to inject myself in the stomach daily for a week with a low molecular size clot dissolver termed "lovenox." Since it inhibits blood clotting, it really leaves a bruise. But, I think I'm done with the injectable.

    A CT scan last week showed the 3 tumors in my brain have pretty much disappeared. After this length of time since tumor irradiation, I think they've decided not to give me chemotherapy unless something shows up. I can't say that I'm disappointed. However, only time will tell if they got everything.

    My physician in Omaha ordered another warfarin blood test yesterday, this time through the folks here in Manhattan. The results were supposed to be FAXed back up to Omaha yesterday afternoon so that my medication level could be adjusted. Of course, I received no calls from Omaha and just found out that Manhattan FAXed the results to the wrong physician. Hopefully, that's straightened out. As far as other screw-ups, I found out that the hospital here in town wrote down some wrong dates of service a few months ago when they were giving me the daily IV antibiotics. Therefore, the insurance company wouldn't pay for those days it appeared they were being double-billed. I've talked with the accounting people at the hospital and they assure me it will be taken care of, but I keep getting hospital bills asking me to pay the difference. I guess I'll have to pay the accountants another friendly visit. I wonder how many people pay for things without checking closely. The hospitals have screwed up my billing 5 times in 2 years, which would have cost me over $1,000 total if I didn't check first then rant and rave.

    11 July 2006 (Tuesday). Where to start. I've been on multiple weeks of IV antibiotics, which seems to have controlled the bone infection over my sinus. I go back in a couple of weeks to see if the infection is really cleared, or if the bone flap covering my sinus needs to be removed. In the meantime, they decided that my 2 remaining brain tumors had to be removed. So, last week I went in and had a CT scan and MRI, the computer program was generated, but 20 minutes before radio-surgery I was informed that the computer broke. Circuit board. So, I had to return to Manhattan on Friday. I went back up for the surgery yesterday and everything went fine. They said that the whole head radiation I'd received 2 months ago had already shrunk the tumors considerably, and one tumor was almost gone. Yesterdays activities should take care of the rest. The long term (possible) side effects that I had to sign off on? Memory loss and brain necrosis.

    19 May 2006 (Friday). I've been pretty much knocked out all week. I developed some sort of late post-operative sinus infection that also resulted in a constant killer headache and my right eye totally swelling shut. They ordered a CT scan, then an MRI and bloodwork, plus consulting with my neurosurgeon at the Nebraska Medical Center. They finally came up with the logical conclusion that I need some antibiotics, which I just started today. No wonder medical insurance costs are so high. Anyway, this will most likely postpone my directed radiation surgery next week for 7-10 days.

    09 May 2006 (Tuesday). I'm now back in my office after three weeks of whole head radiation. My head itches and the hair is gone. But, its easy to wash the head now. Near the end of May, after my brain unswells a bit, I'll be going up to Omaha again for a couple of days. I have a session of directed radiation surgery on the two remaining tumors. After that, chemotherapy.

    My sister, brother in-law, and nephew visited me over the weekend. They went through my house fixing and building a whole lot of stuff that was on backlog. My daughter and I now have shelves in our closets, my daughters shower is now functional, and the lawn is mowed. It really helped me a lot as my motivation and strength to do these type of things are not quite like they were.

    14 April 2006 (Friday). Spent yesterday in Omaha and better understand the treatment schedule. Initially, about 2.5 weeks of full head radiation to kill as many scattered tumor cells as possible. The way they do it will not affect long term memory. However, there is a 5-7% chance several years later of partial short term memory losses where I might have difficulty remembering names of new people I meet and that sort of thing. Full head radiation will be followed about a week later by an afternoon of directed computer radiation surgery to take care of the two remaining tumors. They're talking about putting some pins in my head to hold me in place during the surgery, which doesn't sound like fun. The radiation will be followed by another port insertion in my shoulder, then afternoons of chemotherapy cocktail every 3 weeks for I don't know how long just to kill any cancer cells that may have scattered elsewhere. They tell me the whole procedure will actually be a lot easier than the first time around with the biggest side effect being some fatigue from the whole head irradiation. I barely got my taxes done.

    08 April 2006 (Saturday). The cancer is back and I'm on medical leave. Throughout the semester I'd been forgetting appointments and meetings, having daily headaches, and showing up late for my classes. In March I started having dizzy spells, and finally started collapsing in the hallways a couple times each day. That was a big clue that something was wrong. An MRI showed 3 good size tumors in my brain, each with significant inflammation (pictures below). They put me on dexamethasone to reduce the inflammation, plus anti-epileptic drugs, and 10 days ago removed the largest of the tumors in the right frontal hemisphere. They cut me across the top of the head from temple to temple, peeled the skin down over my face, and went in through my forehead and the right frontal sinus. It's really remarkable what they can do to you and then you simply wake up and are walking around the next day. Really very painless except for all of that tape they like to use on your arm hair to hold in needles. Had the 40 staples out a week later (Thursday), which makes sleeping a lot easier, and the go ahead to start driving again which was really exciting. Right now I'm totally bald with a big healing incision across the top of my head, and still have one of my black eyes from the surgery. But, all in all, I feel better now than before the surgery. This next week I go in for more scans, followed the week after with directed radiation to destroy the remaining 2 smaller tumors over a 3-4 week period. So, I'll be living in Omaha for I don't know how many days each week and returning to Manhattan over weekends to decipher and pay all of my past due bills.

    March 2006 MRI of tumor #1 and inflammation in right frontal lobe. Top view. (Note: MRI images have left and right reversed).

    March 2006 MRI of tumor #1 and inflammation in right frontal lobe. Top view. (Note: MRI images have left and right reversed).

    March 2006 MRI of tumor #2 in upper left part of brain. Side view. (Note: MRI images have left and right reversed).

    March 2006 MRI of tumor #2 in upper left part of brain. Rear view. (Note: MRI images have left and right reversed).

    March 2006 MRI of tumor #3 (possible tumor) in cerebellum. Top view. (Note: MRI images have left and right reversed).

    Me following the surgery.

    I've been getting a lot of e-mails and letters. I thank everyone for them, although I hope you'll forgive me for not taking the time to answer them all. I also still have hundreds of e-mails to wade through from the last few weeks (mainly spam), taxes due, medical bills to pay, etc. Also, we've still got most of our stuff laying around in boxes from the move to the new house. Just a lot of hours of catching up.

    14 February 2006 (Tuesday). Had another 3 month check-up last week. No signs of cancer returning. But, like every year at this time, I've let all of my end-of-the-year paperwork stack up. I keep getting e-mails and phone calls ragging on me to get the reports done. Not sure exactly why I can't remember to do this paperwork. I would make a terrible administrator.

    21 December 2005 (Tuesday). Sierra and I are in the process of moving into a new home, about 2 miles from our current apartment. After 8 years, she finally mandated that we leave the apartment for a "real" home with more space. We're going from 900 sq ft and 2 bedrooms to 2,700 sq ft and 4 bedrooms. We had a lot more stuff to move than I thought, but hopefully the move will be complete by Friday. Last week Sierra painted her entire bedroom herself and I must say its pretty "unique." I think she used 4 different colors of paint on the walls. She says she loves it.

    Cancer is still in remission. I go back mid-January for another check-up but I'm feeling OK and no new lumps or bumps. After going through the torment of moving all of my stuff into a new residence, and in the same month as two major winter storms, I will be very disappointed if I die this next year.

    29 July 2005 (Friday). I plan to only add things whenever I have check-ups or other important news. So, messages will be few and far between. Anyway, my port was removed last month so no more warfarin pills. Surgery was a piece-o-cake and I remained awake throughout the entire process. As usual with local anesthetic, the drug always starts to wear off about the time they're putting in the last few stiches. Also, yesterday, I had another 3 month check-up and no signs of cancer. So, I go back in three months for another check-up. Other than that, I FINALLY got the erroneous billing all taken care of. Just had to find the right person to talk with.

    11 May 2005 (Wednesday). I had a check-up a couple weeks ago and everything was fine. No sign of any cancer returning. I'm scheduled to have my port removed on the first of June and I'm looking forward to getting that taken out. Its a fairly minor surgery, and the bonus is no more warfarin.

    The only problem I've had thus far is the billing. I had a double billing but was able to show them a copy of my cancelled check so they zeroed that account. However, they now want me to pay a bill that they haven't sent into the insurance company yet. It was for pulling 4 wisdom teeth during the radical neck dissection a year ago. I was told up front that it would be covered fully under medical since it was a necessary procedure prior to radiation. However, the billing office won't submit it to Blue Cross for whatever reason. So, I've been given the name of a person in Omaha who I can talk with so I stop getting these nasty notices.

    04 April 2005 (Monday). I haven't updated for a while since I'm doing well. Actually, too well as I've gained about 20 lbs since I finished chemotherapy. They told me it wouldn't happen, but... I had a PET scan last month, and no evidence of cancer. I go back at the end of the month for more tests.

    The real reason for my message this day is to inform everyone who might not known is that Lynn Hertel passed away Friday evening. As many of you who knew Lynn were aware, she was diagnosed with advanced pancreatic cancer 4 months ago. She was very much loved by all of us who knew her. I am relaying the following message from Don Duszynski at the University of New Mexico for all to read:

    "To all the students who worked in our lab and who knew Lynn. After a four month battle with pancreatic cancer, a former student and a dear friend and colleague Lynn Hertel passed away on Friday night, at about 11pm, at her home. A memorial service is being planned and if you would like additional details please let me know. The family requests that in lieu of sending flowers, anyone wishing to make a contribution in Lynn's memory can do so by donating to a graduate student research award that will be set up in her name in the Biology Department. Many of you knew about the battle that Lynn was going through and already have expressed your concerns, appreciation and love for Lynn during these past trying weeks; we thank you for that. Others of you may not have known. The many friends she made through her daily association with many of you who worked on graduate degrees in my lab and with the Biology Department in general meant a great deal to Lynn. We will all miss her a lot.
    Sincerely and with great affection to all of you,

    21 January 2005 (Friday). Went up to Omaha yesterday and had a CT scan, some blood work, and 4 physicians feeling me up. All agreed after their poking and prodding, and looking at the CT scan, that there was no sign of cancer at the moment. So, good news. The most exciting moment was during the CT scan of my head, neck, and chest. For whatever reason, the lady running the scanner insisted that I pull down my pants for the scan. I have no idea why with the buttons on my jeans being so low out of the scan, but she looked remarkably like Valarie Perrine so I didn't argue.

    06 January 2005 (Thursday). I had a great holiday. Drove over to New Mexico and spent some time with my sister and her family in Santa Fe, and also stayed with Don Duszynski and Lee Couch in Placitas. Lots of mexican food and drink, a little shopping and hiking, and good company. A very nice time indeed. I'm feeling terrific right now, much better than before my cancer, probably due to the fact that I've down 60 lbs and my blood pressure remains steady at about 110/65. And, of course, being off that nasty chemotherapy. Actually, my blood pressure went right down as soon as they excised that left jugular, but I'd advise not trying it at home. I go in for another CT scan on January 20th and, thus far, haven't felt any foreign lumps or bumps where the cancer previously resided. If the CT scan comes back OK, then they will schedule a time to remove this port and I can stop taking this warfarin. Classes begin on January 12th, and I'm looking forward to teaching parasitology again.

    29 November 2004 (Monday). I finished chemotherapy last Tuesday and am very happy to have ended that chapter. This last round seems to have hit me kind of hard, with a lot of shoulder pain where the chemo was going in plus nausea and vomiting. And when you are on chemotherapy, the warning time on the vomiting can be pretty slim. However, I'm over all of that now and only have to put up with the mouth sores, nose bleeds, anal sores, slobbering, etc. until the end of the week. I received an injection of neulasta on Wednesday to stimulate white blood cell production, and they also have me on procrit once a month to stimulate red blood cell production. Then, nothing until January 20 when I go in for another CT scan and check-up. All in all, I'd say that as miserable as cancer is, it's decidedly better than divorce court.

    11 November 2004 (Thursday). I'm writing less and less frequently because, frankly, I'm feeling better each day and I've already outlined most of the notable experiences associated with cancer therapy. When I was first diagnosed and found out the extent of the tumors, I was pretty certain I'd be gone within a year or two. At least statistically my chances didn't seem very good. But, undergoing treatment at one of the best facilities in North America has probably increased the odds in my favor considerably. At least I hope so. They tell me that I've got 3 years to sweat it before the odds of a relapse decline to near zero.

    I undergo my final bout of chemotherapy on November 18 and, after five days, I will unhook (hopefully for good). I start gagging everytime I think of going through another round. As far as long term side effects from all of the treatments go, they seem to be multiple. First, the entire left side of my neck seems to be permanently tight and numb. I've gotten used to it and it feels like some deranged dentist grossly missed the target with about 100 ml of local anesthesia. Second, the left side of my tongue is numb and I have to concentrate on not slurring my words. It's annoying, but again I'm learning to compensate. It also makes manipulating food in my mouth a bit of a challenge sometimes. Third, periodic episodes of dry mouth. Not a lot of saliva is produced with 4.5 of 6 salivary glands gone, so I always have to drink a lot of water when I eat. During those annoying nights when I breath through my mouth during sleep, I get super dry and wake up parched and sore. Fourth, nothing tastes quite like it did. Although most of my taste is back, nothing seems to have the full flavor it had previously. And, some things still taste pretty awful. Fifth, my esophagus is constricted somewhat. I was told it would probably happen and I have to take small bites when I eat, chew well, and drink lots of water. If I don't, things get caught in my throat and it can be pretty painful. Large pills have to be avoided, or else ground up and suspended in water. They tell me that the constriction can get so bad in some patients that they have to anesthetize them and stick a rubber tube down the throat to distend the esophagus. Sort of like angioplasty for the throat. Doesn't sound like fun to me. The trachea doesn't seem to be too constricted, so I guess thank goodness for the cartilage rings. Overall, nothing that I can't live with.

    26 October 2004 (Tuesday). This afternoon I unplug myself from the 5-FU and chemotherapy treatment no. 3 will be a thing of the past. Although tolerable, I've felt pretty exhausted the last few days. The oxycontin really helps. My CT scan on Thursday came back negative for tumors, which is great but its still very early. I have my 4th and final round of chemotherapy next month and I'm very much looking forward to putting that chapter behind me. On a side note, what gives with the fruit cocktail? I opened up a can recently and I only got 5 cherry pieces. I then bought the "very cherry" fruit cocktail and only received 9 cherry pieces. What a rip off.

    20 October 2004 (Wednesday). Tomorrow I'm off to Omaha to receive hard chemotherapy treatment no. 3. Bob LeHew volunteered to come along to help with the drive back, which I'm finding more difficult to complete by myself each month. The entire process just exhausts me and my brain wants to fall asleep driving back. And then, two weeks of feeling poorly again. Also, I have a CT scan tomorrow which will serve as a baseline to see if any tumors re-emerge. The effects of the radiation should be wearing off soon, so any cancer cells that self repair may soon start growing again. So, we'll see how Spring semester goes. Many thanks to Janice for the great card and words of wisdom (or not), and to Jessica for the gifts from the FBI headquarters/giftshop in Washington, D.C. Pretty cool.

    02 October 2004 (Saturday). I'm coming down off a mouth full of chemotherapy induced sores, so I expect that I'll be in less pain by Monday. They weren't as bad this time, however, and I was able to eat a bit more than during my first go around. Still, I must have had about 20 mouth sores with a couple as big as small dimes. The biggest problem is waking up every hour or so at night and having to spit up all of the yellowish-greenish crap deep down in my throat. It's really gross. I guess I shouldn't even mention what it feels like to have a BM with sores at the other end... And, another annoying thing is that my hair is continuing to thin. They told me this would happen and that I'd get "most" of it back, but its still a bummer. The third annoying thing this week is that Merck recalled Vioxx. I loved that stuff. I've got about 12 pills left and I guess I'll save them until I start developing back problems again.

    On the good side. Weighed myself the other day and I'm down to 209, which I haven't weighed since the mid-1980's. I thought that was pretty cool so I started trying on all of my old clothes from days gone by. Most everything fit and I now have a totally new wardrobe. Sort of. A couple of nice blazers and several fancy shirts and pairs of pants. I wore one set tonight to a friends wedding reception and I must say everything fit sharply. Now if only my hair would thicken and darken... When pigs fly. The other good thing has to do with wrinkles. Mardi Denell told me that chemotherapy often results in less skin wrinkles since the dermal cells are being killed and a lot of old skin is being replaced a bit differently than usual. I noticed after my first round of chemo that at least some of the wrinkles in my face had disappeared. Now watch some dork in Hollywood come up with some 5-FU skin peeling treatment.

    22 September 2004 (Wednesday). Went up to Omaha yesterday and had a bag of carboplatin. Then, they once again hooked me up to the portable pump with 5-fluorouracil for 5 days. I can already feel the drug knawing away at my gums. Why is it everytime I drive to and from Omaha lately that they have terrible thunderstorms that position themselves right over my truck all the way through Nebraska? Anyway, this time I'm planning on taking the anti-nausea drugs on schedule rather than waiting until the last (or late) minute. I also received another prescription for oxycontin, which will make eating more bearable next week while my mucus membranes slough out of my mouth disguised as putrid yellowish-green pus. The treatments seem so primitive. You know, we could have had malaria and african sleeping sickness totally eliminated by now if a tenth as much money were spent on tropical diseases as it has on cancer.

    09 September 2004 (Thursday). Well, let me tell you about my last two and one-half weeks. I had loads of fun. On August 24th they hooked me up to a bag of Zofran to combat nausea followed by my old nemesis carboplatin. They then sent me home hooked me up to a peristaltic pump and a bag of 5-fluoro-uracil (5-FU) at a rate of 1.5 ml per hour for 5 full days. Before I forget, I want to thank Cy for telling me how to shower while still hooked up to that thing. Anyway, the first few days I felt pretty blah from the carboplatin but it was tolerable. On day three, I started feeling a lot of tingling in my mucus membranes, a bit like someone had run some sandpaper through the major orifices of my body. But, overall, I was pretty proud of myself because I envisioned breezing right through the 5-FU. Hah! On day 5, hospice came to my house and unhooked me from the pump and then on day 6 all of the mucus membranes in my mouth, nose, and other orifices broke with sores. I must have had 50 giant mouth sores along with periodic nose bleeds. Thank goodness I was constipated so I didn't have to deal with anything at the other end. For the next few days all I could eat was white bread dipped in water. For a week straight I had to get up every hour at night to cough or throw up an absolutely gross green-yellow throat and mouth discharge, much of which represented necrotic epithelium being sloughed off. As a bonus I had nausea and some vomiting during the days, especially from the taste of the discharge, and I finally got wise and started taking my anti-nausea pills each day. I also had 4 oxycontin pills left and I took one a day until they were gone. I lost 5 lbs that one week. Right now I have a good appetite and am trying to eat enough to stabilize my weight as I know I've got to do this 3-4 more times before Christmas.

    On the bright side, I did make it to Beaver Lake in Arkansas last weekend to watch my 13 year old daughter complete her check-out dives. I was not in good enough shape to dive with her, but the weather and water were perfect there and I wish I could have gotten into the water too. She's now a certified NAUI scuba diver and my new dive buddy.

    23 August 2004 (Monday). Tomorrow I start hard core chemotherapy. Bob LeHew and I plan to leave Manhattan at 6:00 am tomorrow to be up in Omaha in plenty of time for me to get hooked up. I also need to clear up some billing problems, which I guess is inherent whenever one is dealing with hospitals and insurance companies. Bob and I plan to come back to Manhattan that same evening, so it will be a long day (especially since my car lacks air conditioning). I imagine that with carboplatin and 5-fluorouracil 4-5 days in a row each month that I'll have some days I feel under the weather. On the positive side, I'd like to loose another 15 lbs before this is all over. Over the last month, I've gradually been getting a routine back and I've been putting in 4-5 hr per day back at work. Hopefully the chemotherapy won't be too much of a set back in that regard.

    Not much has changed in Manhattan over the summer. When I got back and started driving around I noticed right off that they re-paved all of the roads leading to the football stadium (like every summer). Never mind that we're preparing to close grade school number three in Manhattan due to lack of funding, but I guess the alumni are happy. I guess I should get off that subject. Anyway, thanks to Gayle, Janice, and Nancy for the gifts and card, and to Bob and Don for staying with me at various times up in Omaha.

    07 August 2004 (Saturday). I've now spent 12 days back home in Manhattan and I'm starting to feel pretty good. Those last two weeks of radiation, plus the week or so thereafter, were fairly tough. It became difficult to eat anything or even drink water and I had to force myself just to eat a couple bowls of dilute oatmeal each day. I lost about 15 lbs in July alone. However, I'm now feeling pretty good and my appetite has increased considerably in the last 5-6 days. Everything still lacks taste but at least there is no pain when I eat. My current diet is pretty boring and still a bit low in calories: about 3 bowls of oatmeal a day, plus 3-4 cups of applesauce and some jello. Garlic bread, pinto beans, and chicken all go down OK as supplements but are pretty bland. I had a fairly intense throat infection for a while that wasn't responding to antibiotics. I was getting worried that it might be a fungal infection but it pretty much disappeared two days ago so I've got that worry out of the way. I go back in two weeks to begin "hard" chemotherapy, although they tell me that it will be a breeze compared to radiation.

    23 July 2004 (Friday). Only a single radiation treatment left and that will be Monday afternoon. I'll sure be glad to be done and at least have a month before I continue with the chemotherapy. The radiation has pretty much taken away all ability to taste, but smell is still acute. I can tell which of those radiation therapists is in the room by smell alone. Two of them really need a breath mint, or at least need to brush after lunch.

    The last couple of weeks have been a lot different than early on during treatment, so I thought I'd go into more detail about what one can expect late in the regime. After the taste goes, the throat gets pretty raw and lesions start developing in the mouth and throat. I was lucky that it took so long for my throat to go bad. The mucus gradually thickens and increases in amount to the point that you have to spend half your time over the sink trying to gag it out. Its truly amazing how much mucus your throat can produce. Sometimes the mucus develops a green color, like mine has done recently, then that is an indication of a secondary bacterial infection. Simply eating, drinking, and taking pills require numbing the throat first, and getting in enough colories each day is tough. I estimate that I'm currently only taking in about 400 calories of dilute oatmeal per day. They've prescribed a lot of different drugs recently, so here's the lowdown on what to expect if you're about to go through this.

    1. Guaifenesin (600 mg 4x/day). This stuff liquifies mucus. Without it, and after having the salivary glands fried or removed, ones mucus becomes so thick that its difficult to even spit it out. This stuff is absolutely fantastic at keeping the mucus thinned and tolerable. They put a little of this stuff in some cough syrups, but not really enough to have much of a significant effect. I keep reading personal stories on the web of people struggling with the mucus, but this is the remedy amigos.
    2. Hydrocodone. There seems to be a mis-print on the bottle so I'm not quite sure of the mg per tablet but they sure are big. This is a morphine derivitive that they gave me following surgery for pain. I never used any of them but I bet they'd make good sleeping pills.
    3. Levaquin (500 mg each evening).This is a fluoroquinolone anti-bacterial used for treating infections of the throat, skin, and urinary tract. The first day that I noticed my mucus was getting green I asked for an antibiotic to head off any serious throat infections. Be sure to ask for an antibiotic at the first sign of green or yellow mucus or your condition could become complicated even further with a secondary infection.
    4. Lidocaine (2% viscous solution). This is a substance with a glycerin-like consistency that numbs the throat. I take a spoonfull before I eat or drink anything to prevent pain. I also coat each pill with it to help get them down and make the next pill a little easier. Lasts for about 10 minutes.
    5. Oxycontin (10 mg 2x/day). A morphine derivitive that is absolutely fantastic at reducing the pain in my throat. It doesn't seem to leave me groggy or anything. These are slow breakdown tablets. You've got to be on this or something like it after your get far into the radiation.
    6. Oxydose (20 mg/ml). This is liquid oxycontin. You take about half a milliliter for "breakaway" pain. Haven't needed it yet.
    7. Prochlorperazine (10 mg tablets). Anti-nausea pills for normal nausea control. I haven't needed them yet.
    8. Ranitidine (150 mg each evening). This is a histamine blocker and prevents acid reflux because of both the chemotherapy and radiation on the throat. A must pill to have and you can really become uncomfortable when you miss a dose.
    9. Roxanol (20 mg tablets). Another narcotic, this time for throat pain. I never filled the prescription. I'd never get out of this place if I even took half these morphine-like drugs they've prescribed.
    10. Roxicodone (5 mg tablets). This is a morphine derivitive. They gave me these for pain control following the surgery, but I've never taken any.
    11. Silver sulfadiazine (1% cream). I rub this on my skin where the radiation is causing the skin to blister. It kills bacteria that may try to become established in the lesion. I also rub a skin moisturizer daily over all areas exposed to radiation to prevent skin from cracking.
    12. Vioxx (25 mg each morning). This is a great anti-inflammatory. I take this to prevent my lower back from going out and also to keep the sciatic nerve inflammation down. I think it also helps reduce the amount of throat damage and pain.
    13. Warfarin (1 mg each evening). This is a blood thinner to keep my port from clotting up. You definately don't want blood clots.
    14. Zofran (8 mg tablets). You place one of these fast disintegrating tablets under the tongue to counter severe nausea from chemotherapy. Haven't needed them yet. This is also the same stuff they give you prior to chemotherapy, again to head off nausea. Be sure to down 30-40 ml of Milk of Magnesia the same evening you take this stuff or you'll be constipated for 5-6 days.

    20 July 2004 (Tuesday). Four more radiation treatments to go and I'm counting the days. The fried epidermis on my neck is now peeling off, similar to a really bad sunburn, and they've got me putting silver sulfadiazine on it to prevent microbial infection. Looks gross but doesn't hurt. The throat pain became very unpleasant over the weekend so they've prescribed oxycontin twice a day. This is a morphine derivitive and works pretty well for maintenance. However, for eating and drinking I also have to down a viscous 2% lidacaine solution to numb the throat. Still hurts to swallow, but at least I can get oatmeal, some water, and my pills down. Thats about all I'm subsisting on right now since even milkshakes irritate my throat. I've lost 10 lbs in the last 2 weeks.

    Went in for another chemotherapy treatment today and found out that my neutrophils have taken a nose dive. So, no chemo today. They'll wait a month after radiation ceases and I'll start a once a month (120 hr slow drip) treatment of carboplatin and 5-fluorouracil (5FU). I've worked with 5FU in the laboratory before and its pretty toxic. Hard to believe they inject that stuff into people. I suppose 4-5 months of that before I'm done. Overall, I can honestly say that I'm starting to feel like horse manure now. Once the throat pain is gone and my taste returns, I'm looking forward to eating real food again. I seem to have a craving for a plate of fruit.

    17 July 2004 (Saturday). OK, now I'm starting to feel fried in the throat. On Wednesday they changed the computer program so that my throat and lower mouth receive a lot more direct radiation. I could tell immediately during the 1st treatment that I had some unpleasant days ahead. After just three days I've now developed a respectable sore throat, 4-5 mouth sores, and a skin rash that extends left to right across my entire throat. I'm pretty much living off 2-3 milkshakes per day. To cap off the week, I received my first speeding ticket in 26 years on Friday driving back to Manhattan. I was driving down the highway at 68-69 mph when an insect the size of a small Volkswagon wacked me along side the head. I had smashed bug all over the side of my face and on my glasses. So, instead of being smart and pulling off along side the road and cleaning up, I decided to try and clean my glasses while still driving. Bug guts are really sticky and it took a few minutes to get them cleaned off my glasses with my shirt tail. Right at that time a state trooper coming in the opposite direction motioned for me to pull over and I noticed that my speedometer had crept up to 75 mph. So, I got ticketed for doing 75 in a 65. Of all the previous times I've truly deserved a ticket and I get one now because of bug guts. Anyway, I get back home and I look in the mirror and that bug had torn a 2 inch long hunk of epidermis off the left side of my throat to boot. If I'd had air conditioning in my car and had the window shut then none of this would have happened. I only hope to survive the remaining six more radiation treatments without too much misery.

    13 July 2004 (Tuesday). The platelets were low again so they decided to delay another chemotherapy until next week. Had radiation treatment no. 28 today and things are still going well. No serious throat pain, external lesions, or mouth sores. I was told yesterday during my weekly meeting with the radiation physician that they are a bit perplexed as to why I'm feeling so well. Apparently, nearly all patients my age (the 40-60 yr age group) undergoing the type of treatment regime that I'm going through need a pain patch and very often a feeding tube by now. Many are hospitalized due to pain, weight loss, and/or extraneous infections and sores. Older and younger individuals tend to be more resistent to the negative effects of radiation. I still think the Vioxx and salt water mouthwashes have a lot to do with it. They tell me that attitude is very important. Nine more treatments and I hope to continue feeling similarly through it all. If I'm feeling OK, they even said that I should be able to go scuba diving with my daughter over the Labor Day weekend on her checkout dives. Kewl.

    06 July 2004 (Tuesday). They haven't killed me yet but they keep trying. First, my platelet count has dropped to a point where they had me skip chemotherapy today. Since I don't have any abnormal bleeding or bruising, I was a bit surprised. But, skipping the treatment is just fine with me as I should feel fairly decent by the end of this week, at least compared to previous weeks. However, the carboplatin is reputed to strongly affect bone marrow so I'm guessing that I'll run into this problem again. Second, since I'm doing so well with the radiation treatments, they want to tack on a couple more days of therapy so I can receive the "maximum" allowable dose. Lucky me. I may start telling them I'm feeling more rotten than I really am. Third, the salivary glands are about fried. I've got one and one-half parotids remaining so my mouth gets pretty dry in the middle of the night. Fourth, and perhaps the most annoying, the left side of my tongue and lip remain paralyzed. Looks like I'll have a permanent lisp and my seminar days will have to be over. Last fun item... I no longer have any hair that grows on my neck and I'm told that the condition will be permanent. On one hand it makes shaving a lot easier but on the other hand I've got a neck that feels like a baby's behind. The bright side is that my daughter has 3 (3 v 3) soccer games this weekend and I'm definately looking forward to attending those.

    04 July 2004 (Sunday). I hate chemotherapy. I felt pretty blah on Thursday and Friday, although I didn't have very much nausea. Just as annoying, everything tastes absolutely awful. There seems to be a place at the far back of the tongue, or perhaps slightly further down in the throat, that deals with taste and it sure is messed up. It's becoming difficult to eat anything simply because food has such an unpleasant taste. I've noticed starches (i.e. pototoes, pasta, etc.) are particularly offensive, whereas foods with higher protein content (i.e. shrimp, fish) are very bland but at least go down. Everyday chocolate tastes like unsweetened baker's chocolate and is really, really bad. Beer tastes nasty now. For whatever reason, perhaps the cold, ice cream/milkshakes are currently the food of choice even though they too are pretty bland. I talked with a lady in the chemotherapy room who has been going through chemotherapy for over 4 months and all she seems to be able to keep down are pinto beans and rice krispy treats. I know that I'd feel better if I could eat more but sleeping is much more appealing.

    Not too much of a sore throat yet, although citrus and meats like beef and pork are pretty unpleasant. The people in radiation therapy tell me that most patients have a very sore throat by now and often need a morphine patch, but I kind of suspect that the Vioxx is helping in that regard. It's a pretty potent anti-inflammatory. Also, I use the salt water mouth rinses faithfully about every half hour and that not only helps reduce mouth sores but also helps the throat. A lot of thick mucus builds up in my mouth at night and I sometimes also need to get up and use the mouthwash at odd hours. Throat cancer is definately going to cut down on my love life (I'm joking. I have no love life). Only 13 more radiation treatments to go and I'm counting down the days.

    So, what else is going on? This week I noticed more and more hair in the shower drain. Last thing I need is thinning hair, but they did warn me that this would happen. However, they also told me that it would only thin and that it would (eventually) grow back. In fact, some people I know actually grew back thicker and darker hair after chemotherapy. One can only hope. I'm very happy with the way my surgery wound is laying down and the continual reduction in swelling. A year from now and it will hardly show. I saw some patients in the hospital with some pretty nasty old neck scars and I'm really glad I scored the surgery team I did. They were truly exceptional. Well, not much more so I'll not bore you any more until next week.

    28 June 2004 (Monday). Just spent an absolutely great weekend with my daughter in Manhattan, but I'm now back in Omaha again. Had my 18th radiation treatment today (of 35 total), so I've passed the half way mark. Very little throat pain thus far, but they keep telling me that I should have a lot of misery shortly. I hope to prove them wrong. But, late last week, my ability to taste took a major turn south. I've tried to come up with something to help describe what everything tastes like (or doesn't taste like) and the best I can come up with is a mixture of Milk of Magnesia and poi. About the only thing I seem to have a taste for is ice cream and cherry pie. I also have my 4th chemotherapy tomorrow and I'm definately not looking forward to it. Last week I had 3 days of a strong metallic (platinum) taste in my mouth that made eating even more unpleasant. I'm hoping if I down extra water this week that things won't be quite as bad. I have three days off next weekend because of the holiday and I plan to spend most of that in Manhattan.

    19 June 2004 (Saturday). I'm back in Manhattan again, until Monday morning. After 12 radiation treatments and 2 chemotherapies, I have to admit that I feel pretty fair so far. A little sore throat is all. Whenever I have a bit of nausea, I eat something and it goes away. No need, yet, to take those anti-nausea pills. Rob and Mardi Denell, both cancer survivors, stopped by Tuesday and took me out for dinner at Johnnies. We had a really nice time catching up. Rob had neck cancer about two and a half years ago and they were there for one of his check-ups. Everything was fine for him. He's currently the director of the KSU cancer center. Both Rob and Mardi have given me a lot of pointers on what to expect, and Mardi was the one that convinced me to come up to Omaha for treatment. Don Duszynski also came up Wednesday and stayed through Friday. I'll admit we did a little bar hopping in the Old Market area of town, like old times, and to be totally honest the beer really makes one feel better.

    A couple of nurses took pictures a couple of weeks ago and I finally got the film developed. The two pictures below show me strapped into the radiation mask and getting ready to undergo one of my daily 30 minutes of therapy (most people have less extensive radiation and it usually only takes 10-15 minutes). I mentioned the plastic mask earlier in one of my narratives and the photo on the left shows it pretty well. Once radiation is over, you have the pattern imprinted in your skin for about 15 minutes and you look like you've got lizard scales. People who are claustrophobic receive a mild sedative. It doesn't really bother me at all and I go through my 30 minutes in that dream world where I'm half awake and half asleep. The time goes pretty fast that way, especially if I think about some old girlfriend from 25 years ago. Those were the days.

    The mask is not for the claustrophobic
    "Luke...I'm not your father"

    Radiation for 30 minutes 5 days a week
    "Yes...I always visit the restroom beforehand"

    As everyone knows by now, I also undergo chemotherapy. Thats on Tuesday mornings and its almost as fun as radiation therapy. You go into a room where they jab a big needle into the port (it doesn't hurt because they numb the area first), take some blood to see how far your white cells have fallen, and then go over a checklist of questions about how you've been feeling over the last week. After the blood work comes back, they take you into the chemotherapy room. You sit in one of the chairs and they hook you up to two bags of fluids. The first contains Zofran, a potent anti-nausea agent. Surprise!...it also causes constipation. After 15 minutes they plug in a bag of carboplatin, which takes about an hour to drip through. They then pull out the port needle and send you on your way. I feel a little woozy for about 10 minutes, and then I'm fine. During my first visit I also asked for a bag of Levitra but they didn't seem amused.

    "Resistance is futile"... Anyway, let me give you some pointers about chemotherapy (thats me in the photo on the left. The iodine-stained area is the port). First, everyone reacts differently even if you're receiving the same drug as the guy in the next chair. You may feel nausea, or you may feel like going for a jog afterwards. Second, you can react to the same drug very differently from one treatment to the next, and of course the more treatments you get the better your chances of feeling poorly. Third, make sure you eat something before the treatment. I find that having food in my stomach every three to four hours totally eliminates any feeling of nausea, and I have the most "twinges" of nausea 48 hours after treatment. Not everyone is going to respond like that, and of course each chemotherapeutic drug acts differently, but they always have lots of snacks in the chemotherapy room. The peanut butter cookies are pretty good. Fourth, drink lots and lots of water. It flushes your system, keeps your kidneys functioning properly, and also reduces the chances of nausea. Not only on the day of chemotherapy, but also for the next two days afterward, I'm always carrying a bottle of water and making trip after trip to the restroom. Fifth, get to know everyone you can. The better they know you and like you, the more attention you get and the faster they'll move you through the different procedures. They love Hawaiian shirts but they don't like crabby people. Finally, and this is a survival tip for guys only and comes straight from several male and female nurses who've confided in me over the past few months... some of the female nurses love to rip out male body hair with tape. They smirk when they do it. Keep the area around all areas where they stick in needles and then tape them down well trimmed.

    14 June 2004 (Monday). Today is my birthday. I'm 25 in a 51 year old body. I drove back to Manhattan Friday evening and had a great weekend simply laying around and sleeping in my own bed. I love that bed; some of the best money I ever spent. Bob LeHew got a few friends together and threw me a surprise birthday dinner last night at Little Apple Brewery. It was really nice. I was tempted to close the place, but I knew that I had to get up and drive back to Omaha this morning. Speaking of Omaha, I had my 8th radiation treatment today and even though my neck feels a little raw, my throats a bit scratchy, and I have a bit of difficulty swallowing, I'm still doing OK. They tell me things will get a bit more uncomfortable by weeks end. I did notice a couple of small mouth sores today, and they said that more will follow. They gave me a recipe for a saltwater/baking soda mouthwash that is supposed to help neutralize discomfort due to mouth sores and sore throat. It works pretty well, at least for now. I also noticed some taste disturbances this afternoon. A lot of typical stuff just tasted funny, and they've warned me that everything will start to taste about the same and a bit unpleasant. Ketchup is starting to act like hot sauce, and I've heard others undergoing neck radiation say that anything based on tomatoes becomes very uncomfortable. At least I'll be more than 25% done with this radiation crap by 4:00 pm tomorrow.

    I've spent a lot of time thinking about the pros and cons of having cancer. Obviously, there are a lot of cons. Surgeries, nausea, needle sticks, tape pulling out hair, radiation, chemotherapy, pain, expense, inconvenience, uncertainty, etc. etc. However, being an optimist, I've been trying to focus on the positive side. Therefore, I've put together my top ten list of "good" things about having cancer:

    1. Really great drugs
    2. Getting lots of sleep
    3. Some cute nurses laying on the hands
    4. Lots of free beers from friends hoping you'll remember them in your Will
    5. No more University committees for a while
    6. Physicians tell you to eat as much and whatever you like
    7. Nearly all women start looking attractive
    8. Everyone feels sorry for you and acts really nice
    9. No cost extensions easily obtained for all of my grants
    10. You find out how good your medical insurance really is

    08 June 2004 (Tuesday). I'm staying the week in Omaha and had my 4th radiation treatment and 1st chemotherapy treatment today. After getting zapped four times (twice last week and twice this week), I can tell that my throat is going to be pretty raw shortly. From what I understand, I'll have to be on morphine soon and that eating and swallowing will be difficult. Before I started radiation treatments, they had a list of "potential" side effects that I had to sign off on. Listen to this... weight loss, drop in blood counts, discoloration of skin, local hair loss, fatigue and weakness, dryness in mouth, cavities and gum or mouth disease, sore throat, ulcerations in mouth and throat, hoarseness and recurrent infections in larynx, possible surgical removal of voice box, hypothyroidism, increased risk of rib fracture, painful jaw bone infection, skin pain and thickening, stiffening and ulceration of treated area, arm and neck swelling, cough, lung scarring, esophageal pain, swallowing difficulties, treatment induced malignancy, and possible spinal cord injury and paralysis. Egad! The chemotherapy was pretty uneventful, with no nausea or other noticeable side effects (yet!). After talking with them about potential hearing loss associated with cisplatin, they went ahead and switched me to carboplatin. This latter drug is a bit rougher on the white blood cells, but doesn't have the potential hearing loss problems associated with cisplatin. In addition, it takes less than one-half the time to administer carboplatin than cisplatin. With blood work, anti-nausea drugs, and carboplatin, chemotherapy should only take about 2.5 hr each time. The schedule is radiation five days a week at 3:00 pm and chemotherapy on Tuesday mornings.

    So, what good drugs did they give me? Well, I'm not much into taking prescription drugs unless I have to, but whenever I do I make sure to research out the mode of action and side effects. I haven't bothered to take the oxycodone and hydrocodone pain killers they originally gave me following surgery. I took some cephalexin, a cephalosporin antibiotic, shortly after surgery to prevent bacterial infections and they also gave me metronidazole IV while in the hospital, also as an anti-microbial agent. I filled a prescription for prochlorperazine, an anti-nausea drug in case I get sick from the chemotherapy, and I have a prescription that I haven't filled for Zofran, a more potent anti-nausea agent. On a daily basis, I've been taking a 25 mg tablet of Vioxx (rofecoxib) each morning, which is a non-steroidal anti-inflammatory that works similar to (but more potently than) aspirin by inhibiting prostaglandin G/H synthase activity. This synthase is more commonly termed cyclooxygenase (COX) and exists in two isoforms. The coxibs (rofecoxib and celecoxib) are cyclooxygenase-2 (COX-2) inhibitors, and COX-2 is upregulated during inflammation and in over 50% of all cancers. Thus, the Vioxx not only suppresses pain but also should (slightly) inhibit tumor growth. I've found that Vioxx is great at inhibiting the inflammation causing lower back and sciatic nerve pain, so I keep taking it since my back now feels better than it has in over a year. Before bedtime I take 1 mg of warfarin and 150 mg of ranitidine. Warfarin, which is also used as a rodent poison, is an anti-coagulant that prevents blood clots from forming due to the port in my shoulder. Ranitidine (one brand is termed Zantac) blocks histamine, which is released from cells during inflammation. The chemotherapy damages a lot of cells, and histamine release can result in gastroesophageal reflux disease (heartburn). So, the ranitidine is used to prevent heartburn. In my reading I've also found that histamine release is one of 4-5 triggers of nausea. Radiation damage also results in histamine release in affected areas and is one reason (in addition to nerve damage) that radiation therapy sometimes results in nausea. Therefore, the ranitidine should also inhibit nausea to some degree.

    27 May 2004 (Thursday). Made my 6th trip up to Omaha yesterday and returned back late last night. The first thing they did was to make a radiation mask for my face, which is a porous plastic mask that holds the head and upper torso in place during the radiation treatments (i.e. so you can't move and so the computer knows exactly where to fry your tissues). Initially, the two nurses in the room said that I'd feel something "wet and warm" on my face as I lay there. That sounded pretty good until I realized it was just a large, wet piece of pliable, porous plastic heated to an uncomfortable 65 C. After the initial discomfort of something that hot being pushed down onto a face that was still raw from a radical neck dissection, the procedure went fairly smoothly. Once the mold was completed, I had my third CT scan in the last two months. Once again they gave me an injection of that radio-tracer which, for whatever reason, makes ones rectum feel warm and fuzzy. That was followed by the scan and the resulting 3D model of my head and torso. These models are very important so that the radiation can be directed toward the diseased areas, whereas the non-affected tissues (i.e. like the spinal cord, colateral parotid, many of the teeth, the tongue, etc.) can be preserved. The whole procedure took about an hour.

    Later in the day I had an appointment with surgery to have a port put into my right sub-clavicular vein. The operation only took about 30 minutes (but with pre-op, paperwork, and post-op a total of 3 hours) and I was sedated but not under full general anesthetic. They simply make a small incision in the skin, take a short catheter and insert it into the sub-clavicular vein, and leave a large bulb or "port" under the skin for chemotherapy and other injections. Before the surgery, however, it took 4 tries and 4 veins for them to get a small needle catheter into a vein in my hand, which was the only uncomfortable part of the procedure. Although I've lost track of the number of times I've been stuck with needles in the last few months, I'm up to 7 screw-ups (i.e. haematomas) thus far. I'm glad to now have a port as I anticipate a blind person should be able to inject into that.

    What's next? I start radiation therapy on Thursday, June 3rd, and have a second zap the following day. After that, I plan to drive down to Wichita to watch my daughter play soccer over the weekend. On Monday, June 7th, I'll drive back up to Omaha to start my first full week of radiation. I will also start my first 5-6 hour long chemotherapy session on June 8th, which I'm told is a real hoot. I plan to keep myself occupied most of June by working on the book I'm co-authoring with Don Duszynski.

    24 May 2004 (Monday). Bob LeHew and I returned back to Manhattan late Friday evening. The meetings with the radiation and chemotherapy staff were about what I expected, and it sounds to me like they have doubts about whether they will be able to kill all of the cancer cells. There will be 7 weeks of hard core radiation therapy beginning the Tuesday or Wednesday after Memorial Day. A couple of weeks later, I will develop a sore throat so severe that swallowing, eating, and talking will be difficult. Continual opiate pain medication will be necessary. The salivary glands will be temporarily damaged enough so that I will be unable to produce enough saliva to keep my mouth moist, and frequent mouth washes and other supplements will be needed to control dry mouth and mouth sores. I will loose all ability to taste, but that sense should return 2-3 months after radiation therapy ceases. I will permanently loose all hair on the left side of my neck and part of my face. I will receive chemotherapy once a week beginning the same time as radiation therapy. Each treatment of cisplatin, which not only kills cancer cells but also enhances the destructive effect of radiation, lasts 4.5 hours. Common side effects include nausea, renal damage, some degree of temporary hair loss, some degree of permanent hearing loss, and alterations in red and white blood cell counts. I should loose 20-25 pounds during the summer and I may also need antibiotics if I develop extraneous infections. From what I can tell, it may not be possible for me to go more than 3-4 treatments with cisplastin without switching to something else as its incredibly toxic.

    I go back to Omaha on May 26 for a radiation simulation, where they computer model my head and build a protective mask for areas of my head and neck that can be excluded from radiation. Later that day, I will also undergo some minor surgery and have a port (catheter) put into a sub-clavicular vein to host my 11 weeks of chemotherapy. Over the Memorial Day weekend, I intend to spend most of my time in Lincoln watching my daughter play in the soccer tournament. I'm also hoping to watch my daughter play soccer in Wichita the following weekend, and doubt whether I'll be able to travel much after that.

    During my stay in Omaha, I'll be spending most of the time at the Lied Transplant Center. This building is interconnected with all of the buildings at the Nebraska Medical Center and has a series of floors with motel-like rooms where patients and their families can stay. There are also restaurants, gift shops, a workout room, etc. They're not bad rooms, and possess two TVs, VCRs, refrigerators, stoves, sofas, etc. However, for any sort of a long term stay, you've got to bring your own creature comforts. For instance, a decent pillow. Check out the photo that Bob LeHew took on the left. You'll see the pillow he brought with him (left side), and one of the Center's "pseudopillows" (right side). We laughed a lot about their pillows. Other items one must not forget include something soft to put on the nursing home-like mattresses (they're covered with that annoying plastic wrap), a playstation to kill the boredom, a computer for writing, internet and e-mail access, and especially grade A "bathroom tissue" if you know what I mean.

    19 May 2004 (Wednesday). Just a quick update. I go up to Omaha this Friday and have two appointments that day to go over the radiation and chemotherapy regimes. I return back to Manhattan that evening and I won't know much about my summer schedule until after the appointments. I've been getting a lot of e-mails and phone calls and even though I appreciate the thoughts, I pretty much get the same 3-4 questions over, and over, and over... So, I thought I'd answer most of them right here.

    1. Question. Does it hurt? Answer. Most of the time. But nothing that is unbearable and it gets better every day. Mainly nerves regenerating. They prescribed some pain medications, but I haven't taken any of them other than some Vioxx. Maybe I'll save the good stuff for Rush Limbaugh.

    2. Question. Did they get all of the cancer? Answer. Who knows? They took everything they could see or feel, including 61 lymph nodes that drained the area (each side of the neck has about 150 lymph nodes, many of which cannot even be seen). Because so many of the lymph nodes (56/61) had malignant cells, I doubt whether they got everything. It will be up to the radiation and chemotherapy to clean house, if that is possible. The chances of survival with head and neck cancer after 5 years is about 50%, and the cancer I have is pretty aggressive.

    3. Question. What all did they remove? Answer. The submaxillary salivary gland with the associated primary tumor, 61 lymph nodes of various sizes and disease conditions, all 4 wisdom teeth (one would have been affected by the radiation treatment), a couple of muscles with very long names, and the left jugular vein. One branch of the facial nerve was a bit damaged during the dissection as a tumor had grown around it, so I will always have partial paralysis of the left side of my lip. The left side of my tongue also does not work properly, so I talk with a lisp right now. That may be due to the fact that they had a problem getting the left bottom wisdom tooth out and there is still considerable swelling. However, more control on that side of my tongue is coming back each day so I may regain full use with time. Most importantly, my libido is totally unaffected.

    4. Question. Are you working now? Answer. Yes. I've been coming into work each day since the Monday following the operation. Not always full days, but better than watching daytime TV.

    5. Question. Why aren't you answering phone calls? Answer. There are two reasons. First, it often hurts to talk. Second, I only have partial control of the left side of my tongue and lip and talking is not my favorite endeavor right now. I've asked the people in my laboratory to screen all calls and only put through those from my daughter (or pertaining to my daughter) and from Omaha medical staff. I also have not been answering phone calls at home for the same reasons. Sorry.

    6. Question. Will you be teaching in the Fall? Answer. I hope so, at least part of it. I think the chemotherapy will be over near mid-August. We'll see. I won't hesitate to take sick leave if I think I'm going to be barfing in Principles of Biology.

    7. Question. Will you be staying up in Omaha this summer? Answer. Part time, yes. Although the radiation only lasts 30 minutes per day, it takes 3.5 hours to get there from Manhattan. So, during the week, I'll be staying up there and then returning back to Manhattan on the weekends whenever I'm feeling well enough. Obviously, there will be times when I won't even want to get out of bed. I will have e-mail so that I can delete all of the spams that will be accumulating in my University account, and so that I can rag on the people in the lab.

    8. Question. Is there anything I can do to help? Answer. Not a thing. I appreciate the thought, but short of writing our lab in as a subcontractor to your NIH grant, I can't think of anything.

    14 May 2004 (Friday). Went up to Omaha yesterday and had the staples removed. A totally quick and painless procedure and hardly worth the drive. The pathology report revealed that the tumors were indeed derived from the salivary glands, and that the primary one had been benign for many years. In fact, Dr. Lydiatt said that he only sees this type of malignancy about once a year as it is quite rare. In addition to the tumor, they removed all of the lymph nodes from the left side of my neck and shoulder, and found malignant cells in 56/61 nodes. Not exactly what I wanted to hear, but it gave me a great excuse to get a couple of beers last night resulting in a much needed full nights sleep. I go back on Friday, May 21, and have two appointments set up to develop the radiation and chemotherapy treatment schedules. The tentative plan is for 6 weeks of radiation therapy with "mild" chemotherapy at weeks 1, 3, and 5 followed by "hard" chemotherapy for 4-5 straight weeks after that. Looks like I may have enough time to get that book done I've been working on for the last 2 and 1/2 years. I have a feeling that I'll be missing a lot of work this summer.

    12 May 2004 (Wednesday). Back again. Had the 5.5 hour surgery 8 days ago and everything went fairly well. In addition to 15-20 tumors, they removed a muscle in my neck plus my left jugular, all of which had been invaded. The anesthesia made me a bit sick when I woke up and I had some pretty thick mucus in my trachea for the first 10-12 hours, but after that I felt pretty well and was ready to get out of the hospital. But... they wouldn't let me out that quickly and kept me for 3 days. They took the IV out on the second day, after I hinted relentlessly that I was tired of getting up to pee every 10 minutes. Didn't need any pain killers as neck surgeries are relatively painless (all those sensory neurons have been severed). I finally got some peace and quiet back at the apartment Friday night and even attended my daughters soccer games on Saturday and Sunday. Don't know why hospitals are such incredibly noisey places, but I was sure glad to be back home. Bob LeHew, who stayed through the operation and drove back up to Omaha to pick me up on Friday afternoon, took some before and after photos that I thought I'd share (below). Bob has been incredibly helpful throughout this whole ordeal.

    relaxing in pre-op before surgery
    (one of the residents decided to initial my neck)

    38 staples and 2 drain tubes later
    (a sexy wound, but a challenge to shaving)

    Some of you who know me well will notice that I look a bit lighter than when you might have seen me last. In fact, I've actually lost nearly 40 pounds over the last 6 months by dieting and continue to loose 3-4 pounds per month. Anyway, I had the drain tubes pulled yesterday here in Manhattan and one got a little hung up coming out. I now fully understand what people mean when they talk about "1,000 red hot needles." That was the only painfull experience of the whole ordeal thus far, not counting the hair coming out whenever they pull tape off. Oh... and the jello. With all of those college degrees, one would think hospitals could make jello according to the 3 step recipe on the box. It's not brain surgery. Anyway, I'm off to Omaha in the morning for a check up and to get those staples removed. Radiation and perhaps chemotherapy in the weeks to come. I'm glad to be back to work, at least part time.

    28 April 2004 (Wednesday). Hey guys. Many of you know, but for those of you who don't, I was diagnosed with a malignant neck cancer a few weeks ago. So, my plans for the summer have changed a bit and I will also miss the last couple of weeks teaching this semester. I'm being treated at the Lied Transplant (Cancer) Center in Omaha (3 hr, 5 min drive from my home) by Dr. Dan Lydiatt, one of the best neck cancer specialists in the world. I scanned in one of the P.E.T. images (see below, left), so you can see the extent of the tumors. The big dark spot at the very top of the scan is the bottom of my brain...NOT a tumor.

    Had endoscopy under general anesthesia on Monday the 26th of April and they found nothing in the larynx, nasopharynx, or esophagus. If you look at the P.E.T. scan, you'll notice some noise over the voice box and they needed to check that out. Luckily, it appears to simply represent swallowing and clearing of the throat during the incredibly boring 2 hour procedure. Whether the spot in my shoulder is cancer or not is unknown to me at this time, but I was moving those arms around a lot trying to keep them from cramping up. Anyway, that was my first time under general anesthetic and I kind of liked it. I woke up feeling quite refreshed, and vaguely remember having a great dream that I wish I could remember more of but that I probably shouldn't discuss.

    The tentative diagnosis is an adenocarcinoma of the submaxillary gland. A local head and neck surgeon, Dr. Ben Pease here in Manhattan, did a cursory examination and came to exactly the same tentative diagnosis early on. Kudos. It seems to be fairly slow growing. A radical neck dissection is scheduled for Tuesday, May 4 at 1:00 pm. The hospital stay should be 2-3 days, and I hope to return back to Manhattan immediately upon discharge (i.e. Friday). Since my daughter will be playing in the Governor's Cup soccer tournament in Topeka the weekend of May 8th-9th, I'm really hoping to be in good enough shape to attend. That might be pushing it, though. After some recovery time, there will be 5-6 weeks of radiation therapy which will involve a longer stay in Omaha (I should be able to come back to Manhattan some weekends, however). I really hope that I'm done in time to scuba with my daughter, who completes her NAUI check-out dives at the end of July. I guess I'll be cutting that date close. I'm told the neck surgery is not that painful (compared to many other types of surgeries), but that the radiation eventually results in a few weeks of absolute misery. Unfortunately, and perhaps the worst of it, is that the hospital suites only have basic cable. What will I do without SouthPark and SG-1 re-runs? On the bright side, I did buy a new laptop and I'll be able to watch DVDs, delete those 150 spams I get daily, and even read those "real" e-mails I occasionally receive. They also have a nice little sports bar called "McFly's" near the treatment center. I'm still planning to go on the 2nd annual Bob, Bob, and Steve Belize scuba trip in January.

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