Human limitations...

I received a number of good suggestions for a better Thanksgiving adjective -- all in essentially the same spirit but I especially liked this one from my friend Jack: have a reverent Thanksgiving! To support this nomination Jack included a couple of quotes from Paul Woodruff's book 'Reverence: renewing a forgotten virtue.'

• "Reverence begins in a deep understanding of human limitations; from this grows the capacity to be in awe of whatever we believe lies outside our control -- God, truth, justice, nature, even death."
  
• "Reverence is the well-developed capacity to have the feelings of awe, respect and shame when these are the right feelings to have."
  

The floor remains open for further nominations, but for the time being I hope you are all having a reverent Thanksgiving weekend (though I am not so sure justice or even truth lie outside human control...both seem to be human aspirations and constructs but that is another story for another day).

Had round II of CHOP today and it went pretty well -- I was home by a little after one. For some reason, I am feeling OK physically today but am really down psychologically. Strangely enough I think it is the hair thing...folks tell me lots of people go into this treatment thinking they'll be lucky and dodge the hair loss bullet though virtually nobody does. Kaylinn, one of my nurses, told me to expect noticeable loss of hair starting 19 days after my first round of CHOP and sure enough Wednesday it started to fall. Today I am shedding like a yellow labrador after spring's first swim. Glad I had it cut short already but afraid my flat-top will be a bald-top very soon.

My parents are in town helping out with James -- Mom is at the library with him now -- and tonight we are planning to go downtown to watch Bemidji's annual 'Night we Light' parade (follow the preceding link to see Auntie Kathleen playing her bagpipes). It is quite the extravaganza and had a huge turnout last year despite sub-zero temperatures and near blizzard conditions. Tonight's weather promises to be much more pleasant so it should be fun. My friend Frank is making a campaign event out of it and running his dog team down the street so that could provide some real entertainment given all the sleighs and horses...good luck Frank! /dps

_______ Thanksgiving?

Kind of a low energy day around here today...but we are going to Lenore's mom's house later this afternoon for turkey and all the trimmings! I have been feeling pretty tired, perhaps because neither my red blood cell counts or my hemoglobin levels had returned to normal before yesterday's infusion of Rituxan. As I was half napping and half watching the Lions-Packers game I got to thinking how odd it really is to wish people a Happy Thanksgiving. Happy somehow seems to connote delusion and distraction -- meaningless football games and the promise of shopping -- happy, happy, happy! Living here in Bemidji between three reservations makes us more aware that the history and meaning of Thanksgiving is more ambiguous than the adjective 'happy' implies. Likewise, this is hardly a happy holiday for us this year but still in reality we do have much to be thankful for even with events of the past month and a half. So, I've been trying (fairly unsuccessfully) to think of a more more appropriate greeting -- Have a reflective Thanksgiving? a thoughtful Thanksgiving? an aware Thanksgiving...any ideas? /dps

Rituxan II: halfway home!

Just started round two of my chemo today with Rituxan. The first time around I had a couple allergic reactions which made for a very long day -- despite a delayed start this time was no problem and I was done by 3:30. On Friday I have the second round of CHOP and then finish off chemo with treatments on December 18-19th. By my tally then I am counting myself as halfway through this nasty process. Still no major hair loss (other than that which was barber inflicted!) but the nurses assure me it will commence any day now -- fashionable either way at least in the NBA with the new Dirk Nowitzki look or the same old Kevin Garnett look. Now if only I could play above the rim! All for now... /dps

Bills, finances, insurance, etc.

Several people have asked about our insurance coverage. With Lenore working just 2/3 time and me returning to graduate school we were looking ways to trim expenses and briefly considered the possibility that I might take my chances and go without health insurance this year -- since I never get sick! As an adjunct faculty member I don't qualify for benefits through BSU and as a part-time graduate student at the University of Minnesota I don't have access graduate assistant benefits either. After contemplating this possibility for a couple days we decided it wasn't worth the risk so fortunately I was added on to Lenore's plan, unfortunately taking a further bite out her paycheck. With the State of Minnesota's Jesse/IR induced budget woes, co-pays and maximum out of pocket limits have increased pretty dramatically and I would imagine we will reach the maximum before too long. We're just happy to do our part in helping the Federal government in their recent efforts assist our nation's struggling pharmaceutical industry! So far we haven't spent much time worrying about how we are going to pay for all this...just getting through it is the priority of the moment. Our friend Miriam has graciously volunteered to coordinate some sort of 'celebration / benefit / concert / jam session' once the chemo and radiation are behind me...more on that possibility later.

Still scheduled to start Round II of chemo tomorrow. Can't say that I am looking forward to it exactly but I do look forward to being able to say that 2/3 of my chemo is behind me. If all goes as planned, the third and final round should occur in mid-December; hopefully I'll be over the worst of the side effects by Christmas. Everything appears to be going well and I am optimistic that a complete cure can and will be the end result of all of this aggressive treatment. /dps

Pre-emptive haircut(s)

Lenore went back to work today, James went to daycare, and I stayed around home and tried to catch up on bills, e-mail, and general around the house maintenance -- even got outside for a little while and moved some snow. About 4:00 I went downtown to old-school barber and bluegrasser Arlen Roline and got a very close cropped crewcut! I am to expect significant hair loss any day now so I figured I might as well follow GWB on the path of "pre-emptive self defense!" (whatever that means). Lenore had an appointment for a trim tonight herself and surprised me (to say the least) with a short haircut of her own! It is nowhere near as short as mine but it is shorter than it has been since we met -- an impressive display of empathy! Photos to follow soon... /dps

Home at last!

Four nights in a row in an isolation room is a long time even with occasional visits from blue-faced chimps (see below if this makes no sense). Finally I got the word late this morning that I could go home. My mom and dad picked me up, drove me back to America Avenue, and immediately headed back to Otter Tail before darkness further compounded their wintery two and a half hour drive (they made it home safely). Sounded like last nights 'basement camping trip' with James went pretty well and that gave Lenore a break from James' recently frequent nightime wakeups. James still remembered me...thought he might give me a cold shoulder after my long absence but he seems as happy to see me as I am to see him. We went to Lake Marquette to have supper with Lenore's mom -- who momentarily took me seriously when I said I thought I should put the plow on the Dodge and do the driveway quick. She was just about to give me heck when she realized I was joking. I am feeling pretty good but not quite that good. We only have a few inches of snow on the ground anyway so unless it continues to pile up for a while the plowing can wait. Just as we were about to head back home the door bell rang and it was a county deputy...seems Auntie Kathleen's three horses had decided to make a trip down the highway toward town. Fortunately for all, they more or less came back on their own. Sweet dreams... /dps

Breaking news...

My white count report this morning was way back up -- well into the normal range. No official word as yet but I am confident that I will get to go home tomorrow morning! /dps

Bubble boy on the planet of the chimps

Remember the bubble boy back a couple decades? Yesterday I was beginning to feel like a bubble boy since it is so quiet here that I sometimes wonder if they decided to close the hospital while I was taking a nap. Actually, it is kind of nice as it enables me to catch up with reading and e-mail. While the bubble boy image was still fresh in my mind, the hospital chaplain (who I know only casually from other contexts) stopped by to chat. I was working on my dissertation when he arrived and since my work has a strong science and religion component, we soon ended up engaged in a wonderfully stimulating conversation* -- that is until I was struck by the fact that with the required mask on he (as well as all the nurses and visitors) looked like blue-cheeked chimpanzees! (OK, I probably have been here too long!) Needless to say, this image, made it more than a little difficult to focus on the substance of our conversation. I didn't say anything at the time and ended up with intermittent giggles all afternoon just thinking about it. Later, I did tell the tale to my evening nurse and she furthered the image by drawing a mouth and nostrils on her mask. Anyway, the whole thing really lightened my mood on what was already a pretty good day.

Had a great sleep last night and have already had my obligatory blood draw, my first IV of the day, and another blissfully aware shower. As a side note, I am finally overcoming my needle phobia which has on various occasions put me on clinic floors and recovery cots. Back to the main event, I am really hoping for some good news on my white counts since I am really getting eager to go home. I also found out yesterday that all of the bone marrow tests came back negative so that was another boost to my morale. I haven't seen James since Tuesday morning and as fast as he is changing I hate to think what I am missing. He is also starting to get pretty puzzled about 'where Dann went.' James and Lenore had a sleepover with Grandma Preece (aka Nanu) and Auntie Kathleen last night so that should have provided a bit of distraction for James as well as some relief for Lenore who is still feeling the effects of whatever bug we Siems' acquired. My parents are driving up today (weather permitting) so that should help as well and maybe even give Lenore the chance to get a full night of sleep and be back to health when I get home. /dps

*I was unable to convert him but we did concur that a good conversation made a fine prayer....

More from North Country Regional Hospital...

My highlight so far today was taking a shower which might seems like no big deal but after a couple days of fever it felt like pure bliss. I am actually feeling pretty good but my white cell counts are still quite low and it looks like I will be here at least through Sunday, especially now that Lenore seems to have also picked up whatever bug James had last weekend. Just talked with her this morning and it sounded like she was headed back to bed once she got James to daycare.

The doctors haven't been able to pin down exactly what is ailing me but the treatment seems to be working nevertheless. My chart says I was admitted to hospital with 'febrile neutrapenia' (sp?) but that is really just a description of low white counts with associated fever. I doesn't say anything about what is causing the fever. I am continuing to receive broad spectrum IV antibiotics as well as the white cell 'jump start' shot.

My oncologist Dr. Shahidi stopped by yesterday and felt optimistic that round two of my chemo would probably go on as scheduled so that would mean that next Wednesday & Friday my white cells will take another hit! This time though my chemo regime will be followed immediately by timed-release version of the white cell production shot I am currently receiving. Hopefully that will prevent another unpleasant episode like this one. /dps

Complications...

Just figured out how to get a laptop dial-up connection in my hospital room. I was feeling pretty bad yesterday so I went to the clinic when I got back from the Twin Cities. Good thing too since I had no white blood cells and an absolute neutraphil count of zero. Basically what this means is that I had no functional immune system. I also have a sore throat and a chest cold of sorts and no way to fight off the infections so I will be hospitalized in an isolation room for several days. On the positive side, round one of my chemo did its job (and then some)!

I don't think I have ever felt sicker than I did yesterday. Alternating chills and fever with temps in excess of 104, all over aches and pains, plus an on-again-off-again headache. I have been getting IV antibiotics since last night as well as shots to stimulate white cell production. I am feeling much better today and my fever seems to have subsided for the most part. Looks like I'll be here until Saturday or Sunday depending on how quickly my immune system recovers. More later.../dps

Minneapolis again...

After a couple of less than perfect days I wasn't really sure if I was up for this week's journey down to my grad class. But, since Frank Moe (Minnesota House 4A candidate and all around good guy) was going down anyway I decided that even if my energy level went way down hill I could still be a passenger. It is always an enjoyable and stimulating cruise with Frank -- solving the world's problems and plotting strategy -- and sometimes we manage to stay on speaking terms all the way down! I am again staying with Jack, Cindy, and Rebecca and am writing this on Cindy and Rebecca's MacIntosh (I'd forgotten how quirky and strange Macs can feel to a Windows user -- or Windows victim depending on perspective).

I am so glad I made it to class. Tonight's session was especially interesting and really helped with the conceptual foundations of my dissertation. A big part of my work is descriptive and quantitative and I really want to get deeper than that -- more toward qualitative subtleties and nuance. Tonight's guest presenter Tim Lensmire, who like myself has been strongly influenced by Paolo Freire, led a provocative conversation about ethnographic research in the classroom that convinced me that such an approach can provide the as yet missing element in my dissertation. Thanks Tim!

On the home front our medical travails continue. James has been battling a nasty head and chest cold for the past few days and with my immune system about to bottom out we thought we should get on top of that so Lenore took him to the clinic first thing Monday morning. He has a tough time sleeping for more than a few hours at crack so that is cutting into our (actually mainly Lenore's) sleep as well. Hopefully he is over the worst of it and will be on the mend when I nadir. /dps

PS to previous post: I am not so naive as to believe that nitrates in the ground water caused my lymphoma in any direct sense -- but only that the correlation is very strong and that given the pervasiveness of nitrate pollution in ag areas and the emerging NHL epidemic we ought to be paying more attention to this matter. In Europe the safe level for nitrate in drinking water is regarded to be 4 ppm and there is even talk about further lowering that level. Here, under marked pressure from the ag chemical industry the current standard for public water supplies is 10 ppm; most private well aren't even tested. If you have a private well and live in an ag area, you may want to contact the Minnesota Department of Health to find out how to get your water tested (on the other hand, I suppose there is something to be said for blissful ignorance ;-)

Why B-cells go bad...

The national incidence of non-Hodgkin's lymphomas has increased 10-fold over the last decade and NHL is sometimes regarded as an epidemic cancer. What is behind this rapid increase? What are the key environmental factors? Such questions have, of course, been nagging at me over the last month but I just haven't had the time to get into the literature.

Today as I was trying to get my head above water with work and school, I was struck by the myriad ways in which my experiences somehow reflect a fundamental unity. Yesterday, I had read an insightful paper for my doctoral class at the U which included this quote: "Writing is not simply a tool we use to express a self we already have; it is a means by which we form a self to express" (Harris, J. 1987). This morning, as I was working on re-writing tomorrow's lecture for my People & the Environment course this fact came through with special force. Tomorrow's talk is about the biological, economic, and social ramifications of potato farming in central Minnesota. In previous renditions of this presentation I have focused on the high incidence of "blue baby syndrome" in areas where groundwater nitrate levels are high. As I was reviewing my notes, I came across this:

• "An epidemiological study of nitrate in well water in Nebraska showed an association between nitrate contamination and non-Hodgkins lymphoma (Weisenburger 1990). The study reported that NHL incidence was twice as high in counties where more than 20% of the wells were contaminated by nitrate or in the 33% of counties with highest fertilizer use."

Interestingly, the report also notes that there is a long latency between exposure and appearance of disease. Childhood exposures correlate with increased NHL incidence in adults. Growing up in a county as agriculturally oriented as Otter Tail this struck me as more than a little bit interesting. The area centered on Otter Tail, Wadena, & Todd Counties has some of the highest groundwater nitrate levels anywhere in Minnesota. Not surprisingly, groundwater nitrate levels are usually highest in areas with shallow water tables since such areas are especially sensitive to contamination from agricultural activity at the land surface (especially center-pivot fertigation and feedlots). As a side note, prolonged expose to nitrates in water is also correlated with the appearance of high blood pressure in people with no other known genetic or environmental risk factors (e.g., my Mom).

The current biggest single nitrate polluter in central and west central Minnesota is potato farming (See my powerpoint notes for tomorrow's lecture for more on this). Potato farming is irrigation intensive and spud yields repond directly and strongly to additions of nitrate fertilizers. Unfortunately, in light sandy soils much (perhaps even most) of this 'fertilizer' leaches directly into groundwater. Ron Offut's LambWeston/ConAgra french fry plant south of Park Rapids drives the local potato industry. Interestingly enough, Ron Offutt was also Minnesota best-rewarded single recipient of federal farm subsidy dollars in 2002 ($1 million plus in 2002 alone!). It's enough to tick a guy off -- and yes, now I do take it personally and have a 'self to express' -- first we look the other way while business as usual poisons our shared groundwater and then at tax time we meekly turn around and contribute to the same fat cat's retirement fund! Of course, I am sure RDO will gladly kick in to cover my medical bills (as well as the bills of all those others subject to groundwater poisoned with nitrates in pursuit of higher profit margins). All for now...I've got to finish my (other) lecture before looking to see if Ron's contribution to my medical fund is in my mailbox! I'll let you all know when it arrives. /dps

Achey and itchy

Not feeling too good today. Just after noon and I am ready for a nap. For some reason, I kind of ache all over -- nothing really painful but just always there. On top of that I have a few extremely itchy areas, some of which are best not scratched in public.

Lenore and James just went out to La Terra to check on the progress on Kathleen's building project. I am going to take advantage of the quiet to get some dissertation work done. This morning we both worked on catching up on capes business. This is our busiest time of year and we were kind of slipping behind. As of today though I think we have our heads above water. We've shipped over thirty capes since this lymphoma stuff started so that will help with $$$ as bills start rolling in. We also added a dozen more in-stock capes to our webpage so we should be ready for the Christmas rush.

Hard for me to believe that less than a month has passed since this all started. This time last month I still thought I just had a bad sore throat and perhaps tonsillitus; I was looking forward to a few more fall fishing trips and then whitefish netting. This year's early ice on Marquette would have made netting tough anyway so at least I don't feel like I am missing out on much. Finally winterized the boat yesterday and also decided to forgo putting the fish house out this winter. I need to do some repair work before it is really winter tight and I think I'll delay that until next summer. So...if anybody gets on a good walleye bite over the next couple months, please give me a call!

Blood work and Lenore's news

Feeling good again today. I went to the clinic for a blood draw this morning to monitor the effects of the chemo. My red blood cell counts are still well within the normal range so all that oxygen-carrying capability probably helps explain why I still have good energy levels (still plodding along on dissertation related work and even starting to catch up with grading in a couple of my courses). My white blood cell counts have dropped (which is good since that is where any remaining goblins might be holding out) but probably won't 'nadir' (bottom out) until the middle of next week. At that point, I'll be especially susceptible to secondary infections so I'll be actively avoiding sick people.

We had another nasty surprise this week. The growths which were removed from Lenore's face last week (and were thought benign) turned out to be a basal cell carcinoma. It is almost as if we've decided to open our own oncology ward. As our friend Laurie put it, kind of makes you wonder if there is something in our water. Lenore had an appointment this morning and her doctor is not especially concerned with the situation at this point. Lenore will use a topical drug called Altara for a few weeks and that should be the end of it -- in any case, it seems like empathy above and beyond the call of marital duty!

Although I remain optimistic and eager to get this whole process behind me, I was reminded of the seriousness of cancer yesterday when I received the news that Susan Smith, a member of my church only a few years my senior, succumbed yesterday after a prolonged struggle against this insidious disease. Susan was a great and kind soul who had a positive effect on our church, on Bemidji State University, and on the larger community. She will be missed and remembered by many. /dps

Getting back into things...

Made it down to the UM Tuesday night for my class; stimulating ride down and back with Frank; Wednesday morning at Jack's with the nefarious breakfast cult; back to Bemidji to team teach the Honors course last night; back over to BSU this morning for a couple hours. I am feeling good. No major backlash yet from ending the Prednisone so hopefully that is a good sign for coming rounds of chemo as well. What else? Final stomach biopsy results came back negative so hopefully three rounds of chemo will be the end of it.

Sleepless in Bemidji

Prednisone is hell on my system. After two essentially sleepless nights I was so out of it yesterday that I forgot all about posting an update. Last night I finally did get some sleep so I am feeling better today and have only tomorrow left for Prednisone on chemo round one. I've also heard that the first couple days off Prednisone can be pretty nasty but as long as I can get sleep I'll be OK.

It gets to be more like General Hospital here every day. James has a pretty nasty cold and last night threw up for the first time! Lenore was over in Grand Rapids picking up her Mom so I got solo clean-up privileges...I'm hoping he gets over whatever is ailing him before my white count bottoms out next week.

All for now...I'm going to try to exploit some of this Prednisone energy to catch up on essentials. /dps

Lenore's Adventure and Saturday update

While I was about to start yesterday's CHOP regimen, Lenore was having her annual followup with long-ago incident of skin cancer. As if her doctor thought Lenore wan't having sufficient empathy for my current situation, they decided to remove a couple of potential trouble spots on her face -- one just beneath her eye and other on her lip. When she stopped up to see how things were going for me I was still feeling OK and she clearly wasn't; plus she had big bandages to show for her pain. By late last night she was feeling good enough that she and my mom went to see a very disappointing 'Grass Roots' perfomance at the Palace Casino.

By last night I was feeling pretty rotten and had a long night. I didn't take my Prednisone until afternoon and as a result didn't get much sleep. Feeling much better today and actually hope to get some work done later. Mon & Dad are staying another day which really helps with James since he can be pretty relentless and he can't quite figure out why his dad is so grumpy.

One thing that made me a little grumpy over the past couple days was the realization that Rituxan isn't quite the silver bullet I thought it was...a case of hearing what I wanted to hear I fear. I somehow thought it killed only the cancerous B cells because I thought they uniquely expressed the CD-20 protein. It turns out that all B cells express CD-20 so all B cells get hit which makes me extra susceptible to secondary infections 10-14 days after the treatment. On the positive side, it doesn't require cell division to do its work so it should be pretty effective. /dps

CHOP

Today was my first day of more conventional broad spectrum chemo. My treatment regime is referred to as CHOP and it includes four agents -- Cyclophosphamide (cytoxan), Adriamycin (Hydroxydoxorubicin), Vincristine (Oncovin) and Prednisone (Deltasone). The first three act by disrupting the cell cycle in dividing cells. Because cancer cells divide more rapidly than most other cells in your body, they in theory get hit the hardest. Unfortunately, other fast dividing cells (hair follicles, mouth lining) also get hit hence the unpleasant side effects. I received anti-nausea drugs before my treatment and so far am feeling fine. My nurses tell me to expect to feel a bit run down over the next few days. Also, in about ten to fourteen days my immune system will be a low point so at that point I am supposed to avoid sick people for a few days. I am still a little hazy on the role prednisone plays in the mix; I have to take two pills a day for the next five days. Side effects are high energy until you stop taking the pills, voracious appetite, and as someone who will remain un-named put it, it also "takes the lead out of your pencil." All for now -- maybe more later tonight -- Lenore also had a medical adventure today so I'll tell you about that too if I get the necessary permission. /dps

Long day with the silver bullet therapy...

Lenore and I arrived at the clinic at 9:00 this morning for my first round of Rituxan -- I finally made it home at 7:30 this evening. It was a long, slow day but fortunately Mom & Dad were here so that gave Lenore a break. Apparently, some bodies (e.g., mine) don't especially like Rituxan. Consequently, they usually start with a very slow drip rate and increase it gradually over the day. When we would get the dose rate up about halfway I'd start to have a reaction so the nurses would pause the delivery of Rituxan and give me antihistamines and a steroid to counteract it. The first time I had a reaction I got an itchy rash on my chest; the second was more disconcerting since I suddenly had a hard time swallowing and felt very hot and flush. The end result of all this was a slow delivery -- it felt like I was driving from Bemidji to the Twin Cities at twenty miles an hour. I have been assured that round two will likely go better.

I did get some positive news today. My blood LDH levels were in the middle of normal range suggesting that there isn't some as yet undiscovered tumor lurking elsewhere in my body; preliminary analysis of the bone biopsy also looked got but we still have to wait until next week for final results on both that and the stomach biopsy.

Gastroscopy and gastronomy

Today I had my stomach endoscopically examined to see if there was any evidence of lymphoma activity there. Based solely on the visual examination and the photos, everything looks good. There were a couple a small bumps in my lower esophagus that they elected to biopsy so now I have a couple days to wait again; the surgeon was quite confident that these were nothing to worry about but he just wanted to be on the safe side. The procedure was a piece of cake compared to yesterday's bone biopsy. My surgeon Dr. Serleth, was a biology undergraduate at BSU while I was working on my Masters (he had his lab course from Dan Houg) so we had a long list of common acquaintances.

Mark Schultz picked me up after my 'surgery' (thanks Mark!) and also delivered some tasty short-bread cookies and other goodies (thanks Peggy!). Then Lamae stopped by with more cookies! All this is good since I have been losing some weight (hard to swallow both before and after the first surgery) but now my apetite is back with a vengeance. I am feeling so good today so I am going over to BSU tonight to meet with my Honors class. Fortunately the class is team taught as I'm not sure how long my voice will hold out. /dps

James Donald Siems

Several people have asked about James' reaction to all that is going on. He seems pretty matter of fact about things even though it is hard to believe that he understands any of the details. The day after my surgery, he informed our daycare provider that "Dann is in the hospital" (he usually calls us Dann and Lenore). He doesn't seem any worse for the wear and is a great source of joy and entertainment as well as a continual reminder of all we have to be thankful for. Another thought that has kept coming back to me in recent days is "better me than him." This morning Lenore and I watched a chemotherapy education video at the clinic and one scene involved a young child having a bone biopsy -- I can't even begin to imagine how horrible that must feel from a parent's point of view. /dps

Thank yous and e-mail replies...

Between work and school related things I am slipping further behind than ever so I haven't put much of an effort into replying to your email encouragments and other support. I hope to get the chance to reply individually over the coming weeks but for now please know how much we appreciate your cards, calls, and messages. It is good to be reminded that we live in love! /dps

Bone biopsy

Started my day with a blood draw and a bone biopsy. Lenore's sister Kathleen dropped me off at the clinic at 8:00 am so Lenore didn't have to rush James off to day care earlier than usual. With the 3+" snow this morning, things were pretty quiet around the clinic so I got in ahead of schedule and the bone biopsy was almost over before Lenore arrived. It wasn't pleasant and I must admit I did writhe and moan a bit so its just as well that Lenore didn't see how wimpy I really am (at least when needle-like objects are headed in my direction). Lenore's mom has had bone biopsies and she assured me that they weren't too bad but then again Norma is tougher than I am. After witnessing childbirth I think women are probably tougher than men in general -- in fact I suspect that if we men had to have the babies our species would have gone extinct long ago! Overall though, it wasn't nearly as painful as I head feared. I should have results back on that in a few days (which will undoubted seem longer). Kim, the lab tech who prepared my marrow slides was a student in my introductory biology course several years ago so that put teaching in a perspective I had never considered.

On my way out of the oncology department through a more general waiting room, I made eye contact with a a few people that I recognized but did not know. My first reaction was that they were thinking something like "He has cancer -- how tragic" which seemed like a reasonable assessment at the moment. Then as Lenore I were walking out to the car it suddenly occurred to me that it is at least possible that I am already cancer free since my tumor had been well encapsulated and Dr. Marion was confident he had removed all of it (see adjuvant chemotherapy on Mayo Clinic's Non-Hodgkin's Lymphoma information page). If that is the case then my coming chemo and radiation might really just be precautionary, a thought I found most encouraging. At he same time, I also know that might not be the case and that cancer is all about probabilities. Along that line of thinking, I want to suggest that you all read Stephen J. Gould's wonderfully humane essay "The Median Isn't the Message." /dps

Prayer, positive thinking, and the power of community...

Those of you who know me well know that I have never put much stock in the power of prayer. As an evolutionary biologist and Unitarian Universalist, my own 'theology' doesn't include a god that intercedes in earthly affairs, personal or otherwise, no matter how diligent or widespread the supplications. Although as Garrison Keillor likes to point out, it is pretty tough to pin UUs down on anything, in my experience most of us are more likely to talk in somewhat nebulous terms like 'positive energy' rather than speaking of prayers. However, over the last few days I have found myself thinking about prayers in a new light since so many of you have promised to 'keep me in your prayers.' I find myself wondering if this is not another case of getting tangled up in words and looking for differences rather than common meaning. All I know for sure is that my mood and my outlook are uplifted by your expressions of concerns whatever you choose to call them. If you pray, please keep me in your prayers. If you think in terms of positive energy, please keep sending it my way. Feeling the love of community is healing either way. Amen.

Moment of calm

Today is an odd day. I am feeling better than I have felt since mid-September and slept straight though the last two nights -- first time for that since early October. My day began with taking out Preece's dock with the help of our wonderful Lake Marquette neighbors the Macks. We of course waited for the first single digit morning of the year! There is a bit of ice around the edges of the lake and we were greeted by a migrating family of trumpeter swans. Usually this time of year finds me gearing up for whitefish netting which opens Saturday but I really don't know if I'll be able to get out this year. I'd like to fish at least a couple days just as a matter of principle but I guess we'll have to wait and see. My surgery has healed to the point where I don't even notice it for extended periods of time so I can almost forget about what is to come. At the same time, the inescapable feeling that today will be my last 'normal day' for a while has made the day feel anything but normal. Over the next four days I am expecting to spend 25-30 hours at the clinic and hospital (increasing my cumulative lifetime total by approximately 50%!). I hope to spend most of this afternoon getting things in order for my classes (both the ones I am taking and the ones I am teaching) but I am already realizing I have more to do than I can possibly accomplish so maybe I'll just do the most critical tasks and then go for a walk. I've also got a couple stacks of well-seasoned birch out in the woods at Lake Marquette so I think James and I will run out and pick those up this afternoon to top off the woodshed and woodbox before tomorrow's expected snow.

Part of me wants to spend every spare minute taking a crash course in cancer biology. Somehow the fact that I can understand the biochemical details of the treatment regime seems very empowering; it also affirms my confidence in what my doctors are doing. At the same time, another part of me would just as soon not think about this stuff anymore than is absolutely necessary. For now, there is an odd sort of equilibrium between these two urges to the point where I feel like I am doing a just enough of both. I've learned quite a bit about Rituxan, the magic "silver bullet" but really don't understand the workings of CHOP very well -- perhaps because the shotgun approach of CHOP leads to nasty side effects that I'd just as soon not dwell on. Hopefully, I'll know more about that before Thursday but I can't help but wonder if mending my whitefish nets wouldn't be better for my health...for now on to work, a walk, and a woodpile.

Hodgkin's or non-Hodgkin's?

One of the most common questions I hear is whether I have Hodgkin's or non-Hodgkin's lymphoma. It turns out, as I noted in an earlier post, that I have one of the 20+ non-Hodgkin's lymphomas. The prognosis for some of these is not especially encouraging. Non-Hodgkin's lymphomas are apparently particularly problematic when the are found in the nodal lymph system -- this is the what you hear about most often. Fortunately, in my case the lymphoma was "extranodal." While tonsil tissue is lymphatic it is not connected by direct ducts to the larger lymphatic system thus there is a pretty good chance that it has not spread widely. There are some similarly isolated patches of lymphatic tissue in the stomach ('downstream' of the tonsil) and these will be examined endoscopically on Wednesday. (History of Lymphoma Research)

Background: Sore throat, absessed tonsil, and Halloween goblins

During September I noticed a minor but persistent sore throat, and although it was unlike anything I had experienced before it certainly didn't seem serious. By early October I was noticing that I was sometimes having a hard time swallowing and I suspected that I might have strep as it seemed to be going around. As my 'sore throat' worsened it started waking me up at night and so, after a particularly sleepless weekend, I went to urgent care first thing in the morning on Monday October 13th. Dr. Webster initially thought it looked like a particularly acute case of strep throat and indeed the culture came back as positive so I started what was to be 10 day course of amoxicillin. Tuesday morning I made my usual weekly commute to the University of Minnesota. By 7:30 pm when my class ended I was feeling bad enough that I decided to drive back to Bemidji that night rather staying with my gracious weekly hosts Jack, Cindy, and Rebecca Shelton. That night, I was having a very hard time swallowing and woke up in a panic a couple times feeling like I was suffocating. Next morning I went back to urgent care and Dr. Webster thought I might have a tonsillar absess (aka "Quincy") and suggested I might have to have it addressed sugically. He also thought the amoxicillin might have a positive effect given a couple more days.

I made it through the weekend but by Monday October 20th I knew that something needed to done ASAP since my sleepless nights were becoming sleepless for Lenore as well. When I arrived at Dr. Webster's office he immediately referred me to Dr. Mitchell Marion, an Ear, Nose and Throat specialist. Dr. Marion did a needle aspiration and found no sign of infection but rather some sort of tissue mass so I head down the hall for a CT scan. Dr. Marion also scheduled me for surgery on Thurday October 23rd. Lenore went with me to an appointment Wednesday morning to look at the results of the CT scan. The "thing" was huge -- kind of an ovoid cylinder just a bit under 2" in diameter and about 2" long. We were both pretty shaken by what we saw but still hadn't fully realized what was happening. I went in for surgery at 7:00 am on Thursday (more on that in another post) and was awake and aware by early afternoon. At that point, Dr. Marion told me that in his judgment the tissue was probably a lymphoma and that it had been split and and sent to Mayo and Fargo for pathology analysis. The lymphoma was well encapsulated and Dr. Marion feels confident that he 'got it all.' His initial guess was that I would probably need about five weeks of radiation treatment. After a full body CT scan on Friday I was discharged from the hospital and (thanks to lots of TLC and Lortab) spent a surprisingly comfortable weekend at home. Monday I found out that the second CT scan didn't reveal anything ominous so that was a great boost to our morale.

Later on Monday the 27th, Dr. Marion called to tell me that appointments had been schedule for Friday the 31st -- Happy Halloween! -- with Dr. Bollinger (a radiologist), Dr. Marion, and Dr. Shahiti (an oncologist). Lenore and I went in Friday ready to hear about how the radiation process would go but were not prepared to hear that the pathology had thrown us a curve. Instead of being the most common tonsillar lymphoma this was the second most common form and a more agressive treatment was in order. The more common form is what is known as an indolent lymphoma and as that adjective suggests it is not especially fast growing. My little goblin was what is known as a diffuse large cell B lymphoma (one of 20+ different kinds of non-Hodgkin's lymphomas). This ends up being sort of a 'bad news, good news' thing. The bad news is that it divides more quickly and thus has a higher probabilty of spreading to other tissues -- hence the need for chemotherapy rather than just radiation. On the positive side, this particular lymphoma expresses a unique protein (called CD-20) on it cell surfaces. A couple years ago, a new chemotherapy drug known as Rituxan was developed that has anti-bodies to CD-20. This means that the cancer cell killing drug can be delivered directly to the cancerous cells! Unfortunately, since it has yet to be established that Rituxin alone is sufficient treatment I will get it along with CHOP, a more conventional broad spectrum agent -- one that makes you sick and can cause hair loss. At this point there is no evidence that that lymphoma cells have spread to other locations in my body. However, Tuesday I have additional blood work and a bone biopsy scheduled with a endoscopic examinination of my stomach to follow on Wednesday. If these tests come back negative then I will have three courses of chemotherapy (one day every three weeks) followed by a couple weeks of localized radiation with an excellent prognosis. If some or all of these tests come back positive, I will have to go through 6-8 courses of chemotherapy without any followup radiation (and a slightly less favorable prognosis). Here's hoping for option one...

PS. I've healed up pretty well already from the surgery...testimony to Dr. Marion's incredible skills!

Welcome to Dann's lymphoma Blog...

Dear friends and family,

Long, long ago* I set up this blog to share my wisdom with the world and then found that I had nothing to say! Things change. Perhaps I still have no wisdom to offer but as most of you will have heard by now, last week I had a tonsillar lymphoma removed and next week I start chemotherapy. Lenore, James, and I have been overwhelmed by the support of family and friends and sincerely appreciate all of the cards, calls, and visits. Many of you have expressed a desire to know how things are going so I will try to post regular updates here. News of cancer seems to initiate a mutant version of the telephone game in which the news gets bleaker with each telling. Hopefully, what is posted here will provide a reasonably accurate, first-hand account of the events and emotions of the coming months. Along the way I hope I can also come to a better self-understanding of my own disease and my reactions to it. I am sending the URL for this page to those of you who have expressed an interest...please feel free to forward the address on to others as well.

Dann

*in 'web time' -- it was actually in May 2002!