This is a site I've set up to help communicate
the status of my cancer to family and friends (strangers are welcome too). I have
stage III 'classical' Hodgkin's lymphoma (the nodular sclerosing
variety). The good news is that
Hodgkin's responds well to modern chemotherapy, and has a very high cure
rate. I realize how lucky I am to have
nothing more serious – we'll see how it goes.
I'll try to update this as my treatment
progresses, newer posts will be at the top.
Some posts are more descriptive and others will be general thoughts on
cancer or whatever pops into my head. Feel free to drop
me a line if you like: ggvogel@gmail.com.
Melancholy Bloud, by the way (Melancholy Blood in the modern spelling), is the term used by Philemon Holland in 1601 in a translation of Pliny the Elder's writings on Natural History. The Oxford English Dictionary cites this as one of the first English references to cancer. Melancholy Bloud sounds a lot more poetic than lymphoma, doesn't it? It sounds a lot less scary, anyway.
(Click here to go back to my Google home page.)
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9 February Saturday (2008)
Four Months Out and Three Centimeters of Hair
Four months after chemo: I'm officially in remission and my hair is growing back just fine. It measures 3 cm (about one inch) long in most places, which is a little awkward - too short to comb to the side, but too long to stick straight up. It feels a little more like fur than hair at this point. As long as I don't start shedding like our cats I'm happy.
This should be the last post on Melancholy Bloud unless there are exciting developments in the next few years. Exciting, in cancer terms, is not at all desirable. In my case, it is also not very likely (it's good to be boring to your oncologist).
As always, feel free to drop us a line!
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29 September Saturday
Well- Appearing Young Man Resting Comfortably
Last Thursday was my final infusion (picture below), and I'm just about recovered from the chemotherapy hangover now. I have to say I won't miss the routine. It should take about a month for my blood counts to climb back to normal, so I'll still need to be careful about infections for a while. The rest of the side-effects should disappear before long too, except perhaps the urge to listen to Hawaiian music (http://www.hawaiianrainbow.com). My hair should start growing back at a normal pace before long, but I'm told it may be a slightly different color or texture.
One final note on my Oncologist, Dr. Nancy Bartlett. Michelle and I both have great respect for her, and she has always seemed thorough. Below is a picture Michelle took of her notes from a visit on August 16. I like that she took note of my little joke, "He is getting more worn out and said 'The novelty has worn off.'" It sure had.
Note that she began the Physical Examination section with, "Well-appearing young man resting comfortably," – I think she began all of the Physical Examination sections like that. I'm finally beginning to actually feel that way. Not so young, maybe, but at least comfortable. Well-appearing? I'll let someone else be the judge.
Michelle and I go back to the Hospital October 18 for a post-chemo PET scan. Given the results of the interim PET, this one should be clear too. At this point my cancer is most likely either "cured" or in long-term remission. It's very unlikely that it will come back in the next five years, but if it does, the sooner it comes back the worse the prognosis. I am scheduled for an oncology check-up every three months for the next two years, then every six months for the next three years, and at least once a year after then.
I'll post the PET scan results here in case anyone is interested, but won't be keeping up with this section of "Cats and Tomatoes" on such a regular basis, unless there are any new developments on the cancer front. If anyone will be near Kampsville anytime soon, stop by to see us!
Low Blood Count Blues
and the Return of Troglodyte to Academia
As promised, a graph of my white and red blood cell counts. (If there were blue blood cell counts, I could be really patriotic.) Before each chemo infusion I have blood drawn for a complete blood count (C.B.C.) to see how the drugs are affecting my blood production. The chemotherapy drugs kill cells that are actively dividing, which include stem cells that produce blood in the bone marrow, so blood counts are often collateral damage in the war on cancer.
(Click graph for larger image)
The full CBC reports chart about 20 different blood variables. My hemoglobin, hematocrit, neutrophil, plasma protein, and a few other scores have been low too, but the red and white cells seem to be the key variables. The numbers indicate how many of each type of cell there are per liter of blood. For white blood cells it's reported as thousand per liter (K/cumm), and for red cells it's given as million per liter (m/cumm).
White blood cells are important in fighting bacteria, so with low counts I've been very careful to try to avoid colds or other infections. My white blood cell counts were high right before chemotherapy, which may have been a result of the cancer itself. The counts were lowest right after the first two infusions, and haven't been within the normal range since then. I carry around little bottles of alcohol hand-sanitizer everywhere and I've felt compulsive using it so much. Good luck so far, though.
Red blood cells are important for carrying oxygen (and lots of other tasks), and low counts can lead to shortness of breath and overall fatigue. My RBC count (along with my hemoblobin, a more direct measure of the blood's ability to carry oxygen) has been low to below normal, and has been steadily declining throughout the treatments. I'm officially anemic. It's just been the past few weeks that I've felt the treatments have been "catching up" to me and actually making me more tired than normal – I'm glad this didn't catch up to me in the middle of the summer!
Only one more treatment to go (this coming Thursday), and a month or so after then my counts should be back to normal.
P.S. – we found a home for Pinky (now re-named Peggy), with our friend Abby in Fayetteville, Arkansas. We drove Pinky/Peggy halfway to meet Abby in Marshfield, Missouri, and made the exchange in the shadow of a 1/4-scale replica of the Hubble Space Telescope. Edwin Hubble spent some time in Marshfield when he was young – Michelle and I have driven by a highway sign advertising the replica several times, but had never stopped there before. I thought it was an appropriate meeting place because finding Peggy a home in Arkansas restores the Cosmic Cat Balance. We have four cats, three of whom are original Kampsvillians, and we brought one Arkansan (Orlofsky) here with us from Arkansas, so the Peggy/Orlofsky exchange balances the equation. I have great hopes that Peggy and Abby will be very happy together.
P.P.S. – If you've been wondering what material I assign to students in the Introduction to Anthropology class I'm teaching at SIUE (and who's not?), you may find this particularly interesting. I recently had the students read an article on primate behavior that has implications for the formation of human nuclear families. The author (Barbara Smuts) makes the point that traditional views of the development of human families centered around dominant males; women were relegated to the sidelines of the theory, simply reacting to what men were doing. The current view is that human family structure is the result of women's choices as much as or even more than men's.
After I first read the article, I thought immediately of a 45 record we used to have of the song Troglodyte by the Jimmy Castor Bunch, and found an early 1970s video made to the song on YouTube. I had students watch this (linked here), and analyze the story line in light of the Barbara Smuts article: does Jimmy Castor show a traditional view of the development of human nuclear families, or was he theoretically ahead of his time? It's a silly academic exercise, of course, which (I hope) will help them remember the point. Anthropology at its finest.
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23 August Thursday
Counting to Five
(not at all cancer related – just trolling for suckers)
(Pinky)
Michelle just wrote a post on her website about a cat who needs a home, you can see her post here. We have four cats, all of them taken in as strays – three from Kampsville, Illinois (Daila, Houdini, and Gray Cat, we took in all three the first time we lived here about 10 years ago) and one from West Fork, Arkansas (Orlofsky). I think the three Illinois cats may make fun of Orlofsky's accent, but I'm not sure.
Kampsville has a terrible problem with feral cats, and we try to do what we can to encourage people to spay or neuter their cats to keep the population down. The archaeological field schools in town help with this problem in some ways, because each year a few cats are adopted by the students. In other ways, field school students make the problem worse, and Pinky is one example. She was "taken in" by students living in a dorm across the street from us, became accustomed to people (and at least partly dependent on them for food), and was subsequently abandoned when the students left town. Out-of-site out-of-mind for the students, but Michelle and I watched her waiting at the dormitory porch every day for food, water, and company.
We already have four cats, and when
we leave for a weekend we always "count to four" to make sure they
are all safe (counting to four, for us, goes: Gray, Black, Tabby,
Calico...). If you have lived with cats
before, you know that the political dynamics of how they relate to one another
can become very complex. Four, for us,
is quite enough for now. We simply
can't afford to count to five.
Finally, the pitch: Do You Want a Cat? How about: Do You Need a Cat? If so, I think Pinky's the one for you. She really is a very good cat – under a year old, very friendly (she likes to be picked up and held), already veterinarian-ized (spayed, had all her shots, etc.). Only a few conditions apply: you must NOT have her de-clawed (a very cruel and all-too-common treatment in the U.S. Did you know it is illegal in some countries?); and you must promise not to push her off on a vet clinic or pet shelter (which are already over-taxed). If you need training in the care and feeding of cats, we will be more than happy to provide that. We will also provide, free of charge, a 24-hour cat help hotline. You can pick up Pinky at our house, and we will provide a cat-carrier for your car. We will also deliver, within a reasonable distance. If you are interested at all, give us a call. Batteries not included.
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The positive side of cancer has been – I don't even know how to explain
this, but the following story may explain how cancer can help a person think
about the good side of life.
We have many wonderful friends and family members who have supported me
and Michelle and we don't even know how to thank everyone. Our dear friend Jo Ann Kvamme (in Fayetteville, Arkansas), held a party where she had everyone fold origami cranes for us. People who were not able to attend the party
folded cranes and sent them along later (some from as far as Alaska - thanks Pat!), and a few weeks ago we received a very
large and light box in the mail. I
brought it home over my lunch hour on my bicycle (and nearly crashed holding the box under my arm!). When we opened it we found it was full of over 1000 origami cranes, most
of them with a hand-written message of support.
Michelle and I were both very close to tears when we realized what it all meant, and we have spent a lot of time looking through the cranes. They have made both of us very happy and I wish we could thank everyone who made them personally – we don't even know who all of the people are. (Although some of the cranes are a bit lopsided – we know where you live, Melissa Zabecki!)
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I haven't posted in a while because I've been busy busy busy... working
on two NSF grant proposals, teaching geoarchaeology workshops on the weekends,
preparing a 4-field anthropology class at SIUE, canning freezing and salsa-ing
way too many tomatoes, and trying to find homes for stray cats in the meantime
(I may post a few stray cat pictures in the future – cute image warning).
I try not to be too negative in this blog, but here goes:
Good golly I've been busy this summer.
Since the last chemo treatment I haven't had a single full day off of
work. In a way, this has been great,
because it has kept me from dwelling on the chemo or cancer too much. Sometimes I feel as if I'm obsessed with
cancer and chemotherapy though – I've researched the studies for the treatments
I've been getting, read all the books about Lymphoma I've been able to find,
chatted on-line with fellow Lymphomaniacs, and generally made a second career
of learning about these cells of mine that have gone wonky.
At other times, to tell the truth, I'm a little sick of cancer. I told my oncologist that after four months the novelty of the chemotherapy has worn off – can I return the unused
portion for a refund?
I can't even predict when I will feel like talking about it or not, and
that makes me feel bad, because I don't want to make other people feel uncomfortable. I don't think I
used to be as moody as I am these days – maybe the steroids that go with the
chemotherapy have something to do with it?
Maybe I'm just becoming a curmudgeon.
Or a jerk, it's hard to tell which.
Truthfully, it has been a little hard to deal with, but I feel
extraordinarily lucky on two fronts: I have good health insurance (acquired
recently – I waited just long enough to get cancer), and I have unbelievably
good support from my family and friends. I am also tolerating the chemotherapy about as well as
anyone can be expected to. Pardon my
ending a sentence with a preposition, but lately I haven't worried
so much about the small stuff.
Preposition.
I've tried to put on a brave face, and really it hasn't been THAT bad,
especially physically. I've lost most
of my hair, I'm more tired than usual, I have a low enough white blood cell
count to be considered neutropenic so that I need to be careful about getting
infections, but really in a physical sense I'm not that far from normal. Maybe a slightly sick or hungover normal for
six months, but there you are.
Really the worst of it has been psychological and emotional. It's hard to explain how this is. I had great plans for this summer – aside
from my normal work schedule I wanted to publish a few papers related to my
dissertation, I have a book on the archaeology of Caddo mounds in the works I'm
trying to get people to write chapters for, and a there are few more projects I really
wanted to deal with over this summer, but I haven't had the mental or
psychological energy to deal with these things. Joe Lazy.
Want an excuse for not getting everything done you wished you could? Get Cancer! (That's a joke, of course).
It's good to be busy and I am certainly not "too busy" by standards that make me happy. I just hoped to get more done but cancer got in the way – go figure. Life is inconvenient (how about that for a bumper sticker?). Other than that, it's not bad. For me, in fact, I'm quite happy to be alive. You?
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The image below shows the results of my first and second PET scans – only three months apart and the difference is clear. Again, knowing that the chemotherapy is actually working and being able to see the results makes getting the treatments much easier to tolerate. (See the May 7 post below for an explanation of the PET scans.)
(Before - Left; After - Right. Click for larger image)
Michelle and I have "settled in" to the chemo schedule now so
that they seem at least familiar, if not exactly normal. Chemo Thursdays themselves are mildly awful
– I still begin feeling sick and "buzzy" as the DTIC is injected, and
I don't feel quite right the rest of the day.
It's an odd sort of sick feeling I've never had before. I've described it as being similar to a
hangover, but it's really not quite like that.
I get an odd warm-pressure-sick feeling in my chest, and I feel slow and
it's difficult to concentrate on more than one simple idea at a time. I'm always worried that I seem rude to
people because I don't feel like talking or even smiling very much on those
days. Michelle and I often go grocery
shopping in St. Louis on the way home, and I usually don't remember quite all
of it. After a good night's sleep,
though, (thanks to Ativan, which I've begun taking on chemo nights), I'm good
to go by Friday. As Snoopy sang in You're a Good Man Charlie Brown: Not bad, not bad at all.
Aside from my hair falling out I haven't had many large or visible effects
from the chemo yet. My blood counts
have been very low so I've been careful to try to avoid getting infected, but
I've been lucky so far and this hasn't been a problem. I'll try to chart and post the change in my
blood counts soon.
The worst part of the chemo so far has been pain at and near the
injection sites. The reasoning behind
chemo-injection site determination is interesting. If someone needs to get chemotherapy very frequently, or if they
have poor veins for needles, they are often fitted with what the oncology
nurses refer to as an "access point". This is usually a port that is surgically implanted. Ports have a
catheter inserted into a vein close to the heart and a rubber-like access point
for needles just beneath the skin. Some
versions have the access point outside of the skin, in which case the potential
for infection is greater. In either
case, they are used for blood draws, chemotherapy infusion, and anything else
that requires an IV, without the bother of having to find a vein. True plug-and-play technology. You can see a diagram of how they work here:
http://www.breastcancer.org/port_chemotherapy.html.
In my case the chemotherapy is not very frequent (just once every two
weeks), and the nurses have liked the looks of my veins so far, so they insert the needles into veins on the backs of my hands. Is
that startling? I certainly didn't like
the sound of it when I first found out: needles in the backs of my hands? These veins are usually used
(at least at first) because chemotherapy can be hard on veins – recall that
many chemo drugs are vesicants (blistering agents), and are meant to cause damage to living tissue.
They burn a little on injection and the drugs and needles can cause
veins to collapse. If a vein collapses,
the nurses can always try again farther down the bloodstream, but not farther
up. The back of a hand is about as far up
the system as you can get, so it's the preferred starting point.
We've been alternating between my left and right hand, but the effects
still seem to be accumulating slowly.
My injection hand, including the wrist, usually begins to hurt 5-6 days
after the infusion, and I can even feel a slight pain in the very vein itself
for a while. I'm open to the idea that
this may be psychosomatic (honestly I think at least part of it is), but it
sure feels real. I've begun wearing a wrist
brace at night and that has helped greatly.
All four chemo drugs I'm getting can cause injection site pain, and
DTIC can cause temporary nerve damage, leading to numbness or tingling in the
hands and feet. I don't know if it's
the DTIC or not, but my hands have been a little shaky lately, particularly for
a few days after the treatments. I used
to be unduly proud of an ability to write in extremely small letters. This is
actually a valuable skill in archaeology, when writing provenience and
identification information on small artifacts.
(I once wrote a little poem for Michelle titled A Little Poem For Michelle.
The letters were just a few millimeters tall.) These days forget it – even my regular-sized handwriting is worse
than normal. Shaky hands Pete – good
for me I'm not a gunslinger these days.
Just a quick note this evening –
after a long day at the hospital with PET/CT scans and chemotherapy, we learned
that the scans came back negative, which means that the chemo drugs are working
very well. The radiologist's opinion
included, "Interval
resolution of abnormal FDG uptake within supraclavicular, axillary,
mediastinal, and upper abdominal lymphadenopathy, which has also decreased in
size since the prior examination dated 04/19/2007; No foci of abnormal FDG
uptake within the neck, chest, abdomen, or pelvis."
Not exactly Hallmark Card material, but comforting none the less.
It's a little early to hang a
giant "Mission Accomplished" banner and give a speech from the deck of
an aircraft carrier, but the negative scan is very good interim news. I had about 30 lymph node tumors visible on
the first scan, and with an estimated 1,000,000,000 (one billion) cancerous
cells in each tumor, this scan means that there are too few left to
metabolize a large enough quantity of the radioactive tracer to show up on the
PET scan. Of course as long as even one
of the 30,000,000,000 cancer cells are left alive, a recurrence is
inevitable. This is why I'm still
scheduled for seven more rounds of chemotherapy – which, now that we know the
stuff is actually working, will be much easier to take from now on. I'll get a copy of the PET scan from the
hospital and post a picture or two soon.
Now, off to bed and (Ativan willing) a good night's sleep.
Michelle and I leave for St. Louis tomorrow afternoon for the next
round of chemotherapy, and I'm a little anxious about it because I'll get my next
PET scan. Much more than the
Bellwether Node, this PET scan will be a very good indicator of how well the
chemo is working.
Keep in mind that I'm not a medical doctor (I don't even play one on
T.V.), and that statistics apply to populations not individuals, but the latest
studies I've been able to find show that Hodgkin's patients with a negative PET
scan after four rounds of chemotherapy have a very high two-year
progression-free survival rate (in the three studies I've seen: 93%, 96%, and
100%). This means that if the PET scan
shows no uptake of the radioactive sugars into my lymph nodes, I can finish the
rest of the chemo as planned and not have to worry very much about a recurrence
for at least two years (barring more serious complications from the chemo
drugs).
Patients with a positive PET scan after four rounds of chemotherapy had
a two-year progression-free survival rate of close to 0% (0% in two studies and
6% in the other). This means that if
the scan shows uptake of the radioactive sugars into my lymph nodes, I'll
probably have to switch to higher-dose chemotherapy, radiation, or some other
method of treatment.
One of the most important tests I've ever taken and I don't even know how to study for it!
Nancy Drew and the Bellwether Node
Misfortune, n. The kind of fortune that never misses.
- Ambrose Bierce, The Devil's Dictionary.
Boy, what a couple of weeks.
The third round of chemotherapy (May 24) was awful. The DTIC really packed a wallop and made me feel
sick all day on Thursday. At least I
think it was the DTIC – I started feeling sick and "buzzy" as soon as
the infusion began. Friday and Saturday
weren't so bad though, and the fourth round of chemo (last Thursday) went much smoother. I think it may have to do with the amount of
saline solution they give me with the chemo drugs. I've been staying as hydrated as I can, and this last time I
received nearly a liter of saline with the chemo, which is more than usual. I'll be sure to have them give me at least
that much next time too. Smooth sailing
from here on out if nothing changes.
I've been warned that some side
effects of chemotherapy are cumulative, though, and may not show up until well
into the treatments. The tops of my
feet have begun tingling on-and-off, for example, which may be due to minor
nerve damage from the Vinblastine (luckily this should go away after the
treatments end). My white blood cell
and red blood cell counts have been low, but not low enough to stop the
treatments or require extra "blood-boosting" drugs yet. I'll chart the change in my blood levels to
post soon. The blood system is very
interesting and it's been fun reading through biology and anatomy texts to
understand it all. I've also been
listening to more Hawaiian music than usual.
I'm not sure which of the drugs causes this side effect but
it's one of the more pleasant ones. I
particularly like http://HawaiianRainbow.com ("A Tropical Vacation for your
Ears") for 24-hour streaming dakine.
I thought of Ambrose Bierce's definition of "misfortune" when the Beetle broke down again last week. I was driving a load of recycling to a local center when it started losing power, and I thought it was the fuel pump again (described in the bottom-most post here). I began looking for a place to pull off of the highway when I heard a very loud explosion from the engine. I looked back and noticed that the deck lid had been blown open, and black smoke and flames were shooting out of the engine compartment. I pulled over but didn't have any way to suppress the fire until Bob Smith happened by with a fire extinguisher, so I was able to put it out before it caused too much damage. Turns out the metal coupling that holds the fuel hose into the carburetor came loose, so gas was shooting out of the hose all over the engine until it caught a spark. Again, I'm lucky that it wasn't anything worse. It looks like we should only need to have the burnt hoses and melted wires replaced.
Groucho Marx famously quipped that he wouldn't belong to a club that
would have him as a member. I've never
been much of a club-joiner, but now that I have cancer it's as if I've been
inducted without even knowing. The
Cancer Club has no regular meetings (except for the local chapters where we get
together for chemo and cookies), and the dues are pretty steep. The only benefit to membership I see is
getting to know other members, and there are some great ones.
Famous members of the Lymphoma Chapter of the Cancer Club include
Microsoft co-founder Paul Allen, golfer Paul Azinger, hockey players John
Cullen and Mario Lemieux, comedian Arte Johnson, and actor/politician Fred
Thompson, who recently announced that he has indolent Non-Hodgkin's
lymphoma. Laurence Tureaud is also a member – you may know him as Mr.
T. I think he serves as a bouncer at
the club lounge.
Former members include Jacqueline Kennedy Onassis, Charles
Lindbergh, King Hussein of Jordan,
baseball player Roger Maris, comedian Dan Rowan, the singing cowboy Gene Autry,
and musicians Junior Wells and Joey Ramone, all of whom died of lymphoma.
All in all, not bad company.
Even better company are current members I've met either in person or
on-line. There must be thousands of
cancer-related blogs, I've begun keeping up with just a few of them. One of my favorites is by Carl Wilton, a
Presbyterian Minister in New Jersey, currently in remission from Non-Hodgkin's
lymphoma. He writes very thoughtful
pieces about his personal experiences with lymphoma, and has written many posts
about social issues concerning cancer in general. I particularly enjoyed his May 10, 2007 entry about our health
care system. You can read it here:
http://cewilton.blogspot.com/
I also keep up with the blog of Tom Clarke, a lawyer in Des Moines,
Iowa. Tom has both brain and lung
cancer, and is not expected to live beyond July of this year. Keep in mind that this type of prediction is
notoriously inaccurate, and Tom advises anyone wagering on his demise to bet
the over. He and I were in school at the University of
Iowa at the same time, and judging from many of his blog entries we probably
frequented the same places – I don't remember meeting him but we may have
crossed paths once or twice. His
entries range from hilarious to terrifying, and many of them are not safe for
all audiences, but I have found the way he is facing his cancer to be
inspiring. You can read his blog here:
http://mylungcancerstory.blogspot.com/
I've recently come across the web page of fellow Lymphomaniac Heather,
a potter from upstate New York. Heather
is currently in remission from Hodgkin's lymphoma. Her insurance did not cover all of the costs of the treatments,
and several of her friends (who must be very good friends!) agreed to pose
naked in a calendar to help with her medical costs. Her friends wrote on her website that, "The medications
that will keep her alive physically are going to kill her financially, and even
if she survives the cancer, she may not survive the debt."
I've e-mailed with Heather a few times and she's offered me lots of
encouragement and some very good advice about dealing with the effects of
chemotherapy. I've ordered one of the
naked lady calendars (my first one ever, believe it or not), and if you have an
extra $25 on hand this wouldn't be a bad way for you to blow it. Keep in mind that $25 is less than the cost
of a single one of my anti-nausea pills, and at my current rate of consumption
it will take well over 100 of them to get me through the treatments (lucky for
me they are covered by my insurance).
You can visit her site here: http://www.limeproject.org/index.php
I wish I could do more to help Heather and others in her situation –
raising awareness about the gross inadequacies of our health care system is one
way to start. Until then, I hope the
Naked Lady Health Care System works for Heather.
Egghead, and Happy Mother's Day!
The
post-chemotherapy hangover has been much better the second time around, largely
thanks to the anti-nausea drug Ondansetron (generic for Zofran). I realize again how lucky I am to have good
health insurance – this stuff costs $36 per pill, and at my current rate of
Zofran consumption it will take 10-15 pills to get me through the nausea of
each chemo session. I can't imagine
having to decide between five days of intense nausea and puking or five hundred
dollars worth of pills, but for many people I'm afraid this is a very real and
difficult choice. We've begun receiving insurance invoices for the treatments, and the prices are shocking. More on this later.
My hair began
falling out over the weekend, and it completely clogged the shower drain this
morning. Gross, I know. I decided to have it shaved to avoid the
worst of the "ick" factor when it begins coming out in bigger clumps. Below is a picture of me with a full head of
hair and beard from a few years ago (1993), and with my head shaved earlier
today. Now at least I'm an honest
egghead.
A brief story for
Mother's Day: I remember in grade school my mother wanted me to comb my hair
more often. She told me the story of a
boy she knew when she was young who never combed his hair, so everyone called
him "Harry Haystack". I
wouldn't want to be called that now, would I?
Truth is, I thought it was a pretty cool nickname, so I began combing my
hair even less often. Alas, no one ever
called me Harry Haystack, and my poor mother had to struggle through several
more years of a rat's nest on top of my head.
Consider this a Mother's Day present, Mom: you won't have to worry about
anyone calling me Harry Haystack for quite a while now!
Harry Haystack: In the photo booth at the Deadwood, Iowa City, 1993.
Egghead: Kampsville,
Illinois, 2007.
Insomnia Boredom
I had my second round of chemotherapy yesterday – 2 down and 10 to
go. Like last time, I haven't been able
to sleep much tonight. I think this is
mostly from the steroids that go with the chemo mix, combined with all the
water I've been drinking to flush the chemicals from my system so that even
when I doze off I have to get up soon to pee.
Several people have suggested sleeping pills, but I have so many
different chemicals in me at the moment that I don't really feel like adding
one more to the mix (the 4 main chemo drugs Adriamycin, Bleomycin,
Vinblastine, and DTIC, along with Benadryl, Tylenol, steroids, at least
one anti-nausea drug from the IV, and a pill for what I politely refer to as
"gastro-intestinal distress").
I'm a walking pharmacy.
I've been sleeping so much lately I
don't mind one restless night every two weeks, but it's difficult to find
something to do. I'm too tired and
fuzzy-headed from the drugs to read anything serious, I can't concentrate long
enough to make any progress on projects from work, and there's nothing on TV at
3:00 in the morning but home shopping shows hawking coins and knives. Mostly I've been staring at the cats and
reading a few collections of newspaper comics (Calvin and Hobbes, Peanuts, The
Far Side, Footrot Flats).
Jigsaw puzzles and other
"brain-teasers" come to mind as alternatives, but I'm not
particularly fond of these. Feel free
to send along suggestions for nighttime activities if you have any – anything
will work as long it is interesting (but not so interesting that it keeps me
awake), easy (but not so easy that it's boring), and doesn't require dexterity
or serious concentration. A tall order, I know.
Below is a picture from my first PET/CAT scan. With any luck this will serve as the before picture to a
better looking after in a few months.
It's taken me a while to export the images from native format (DICOM) to
something I can manipulate in GIS (I'm a fan of Idrisi). There are several free DICOM viewers
on-line, but none of them seem capable of serious image manipulation, and of
course the more powerful DICOM programs are expensive. I was able to export the body slices as
TIFFs and import them into Idrisi. It
was interesting georeferencing the PET and CAT images using body parts instead
of landscape features for match points.
The blue parts of the image are from the CAT portion of the scan
(Computed Axial Tomography). CAT
technology combines multiple x-ray images into three dimensions, but this one
is a single scan from the top down. You
can see a rectangular structure from the scanning machine underneath me.
The yellow portions of the images are the results of the PET scan
(Positron Emission Tomography). Instead
of detecting differences in bone and tissue density, PET scans show the
location of radioactive tracers injected into a body. For cancer patients, this is usually FDG (fluorodeoxyglucose), a
radioactive substance similar to sugar.
After about an hour in a body, the tracer accumulates preferentially in
cancer cells because they metabolize sugars faster than most other cells. The tracer also accumulates in the brain and
heart, and to a lesser degree in a few other organs.
(Click image for larger version)
Aside from my brain and heart, the tracer accumulations in this image
show "hot spots" where the cancer is – primarily in my chest, but a
little in my abdomen too. The
radiologist who examined the scans in detail gave the following opinion:
"Extensive FDG-avid lymphadenopathy in the supraclavicular, mediastinal,
axillary, diaphragmatic, and upper abdomen as described above, consistent with the patient's known Hodgkin's lymphoma." Lots of words to look up if you're interested.
(Click here for animated GIFF)
Doughboy Greg
I drove for the 1st time in New York after
my 2nd heart attack on November 2003. I
knew that if I could drive over the Brooklyn Bridge I'd be fine.
While driving I thought of all the people
who died for me to do this and how impossible it was to build. And how huge it was. If man can create this bridge, then surely,
I can live for a long long time. I'm
going to be okay. However, I better get
working on things I've always wanted to do, like open my mouth and Speak Out!
First on my list was that as soon as the
kids were through college I intended to go.
This was the "kick in the pants" I needed. How scary could college be compared to the
Brooklyn Bridge? My fate is in my
hands. I am good. College is still scary, but I'm no longer
scared to death after driving over the Brooklyn Bridge.
Queen R. Wolf Berg, October 12, 2005
(Hi Love, hope this finds
you feeling good. I find it amazing how
a place can give you hope and confidence.
Go to that place now. I love
you, Rita.)
27 April Friday
Chemotherapy: 1 down, 11 to go
I had my first chemotherapy session
yesterday. I feel much better than I feared I would, and Michelle and I
are both breathing a sign of relief about that. I'm still a little tired,
muddled, and achy this evening though. I think the effects of the
steroids and anti-nausea drugs they gave me by IV are wearing off. I have
anti-nausea drugs at home, but I don't think I'll need to take any. As
much as anything else, today I feel as if I have a hangover, just without the
fun of the night before.
Considering the poisons injected into me yesterday,
it's a wonder I feel as good as I do. My cocktail of choice these days is
called ABVD for the four different chemicals: Adriamycin, Bleomycin,
Vinblastine, and DTIC. These are essentially caustic chemicals and
each has its own HAZMAT warning. Adriamycin, for example, is a "vesicant",
described in a handout I was given as, "a chemical that causes extensive
tissue damage and blistering if it escapes from the vein." That
doesn't sound safe at all, does it? I felt the Vinblastine burning a
little as it was being injected, so Michelle nicknamed it
"vein-blasting".
The chemicals are so bad for you that you need another
suite of chemicals just to protect yourself from them – I was given Tylenol and
Benadryl by pill, and an anti-nausea drug and steroids by IV before the Chemo
began, along with Tylenol and two different anti-nausea medications to take
home in case I needed them. I was also advised to drink plenty of fluids
that day to help flush out the chemicals as soon as possible. First they
squirt them into you, then they want you to squirt them right out again.
Just like the methods used to extract bone marrow samples
(see April 19 below), chemotherapy sounds much too primitive to be a part of
modern medicine – poisons to kill a part of the body that will kill all of it
if you're not careful. Leeches, anyone? I'm grateful, of course, to
all of the doctors and researchers involved in developing modern
chemotherapy. I'm even more grateful, and highly sympathetic, to all of
the cancer patients who had to endure earlier versions, which didn't work
nearly as well and had far worse side effects.
The nominal course of chemotherapy I have will last about
six months: twelve doses, administered every other Thursday. It may be
slightly shorter or longer, depending on how effective the drugs are shown to be
on PET scans. I'll post a few pictures from the results of the first PET
scan soon – these, at least, seem advanced enough for modern medicine.
****************************************************************
23 Aprille Tuesday
(April is Aprille when it's a nice day outside)
Stage III
Today I received the results of the PET scan and bone marrow biopsy. The cancer appears to have spread throughout my lymphatic system (both above and below the diaphragm), but has not moved into other organs or my bone marrow yet – good news there. The cancer is officially Stage III (out of IV stages). I will go over the PET scan in detail with my oncologist, Dr. Nancy Bartlett, on Thursday. The scans are fascinating and I'm looking forward to understanding them better – I have a copy of my initial CAT scan and have put two screen captures from it below.
The
first image is an overall scan of my chest.
I'm not sure how to interpret these yet, but I'm told the lymphoma is in there somewhere.
(Click for larger version)
This second
image is a horizontal slice through my jaw, my teeth are near the top of the
picture. For the anthropologists out
there, this demonstrates conclusively that my teeth have a parabolic instead of
U-shaped arch, so I'm at least as evolved as an Australopithecine.
I don't know if there are any lymph nodes shown here, but it's interesting the way the CAT scan X-rays are diffracted by the fillings in my teeth – you can see the scattering effect all the way to the back of my head.
(Click for larger version)
The
CAT scan has three overall chest images and 74 horizontal-slice images. Unfortunately they are in proprietary format
(the CD came with self-extracting software), and I haven't yet figured out a
way to import them into GIS. I'd like
to try some statistical time-series analyses on the images, and it would be fun
to georeference both the CAT and PET scans for supervised classification of the
lymph nodes. Let me know if you have
any ideas.
I begin chemotherapy on Thursday, and I'll be
glad to actually get started. It sounds
a little like a party – you get to invite a guest, lay around on a comfortable
chair, they give you cookies, and half the people are on drugs. I'll let you know how it goes.
******************************************************************
24 Aprille Sunday
Mushroom Hunting
20 Aprille Friday
Why Lymphoma?
(Don't take this essay too seriously, by the way - what's the point of cancer if it's not funny?)
An obvious question to ask is "Why cancer, and why me?" The answer is not at all easy. In my case, though, I think one of the blood cancers is entirely appropriate – it simply fits my lifestyle as a young and active professional.
For example, its treatment does not require extensive surgery, so I am not likely to miss long periods of work, while at the same time chemotherapy sessions will serve well as an occasional excuse for an extended fishing weekend. The attendant weight loss is a nice way to jump start a much-needed diet and I'm really looking forward to shedding a few more pounds. Loosing my hair is a sure way to stand out in the crowd of other professionals looking to advance their careers.
Chemotherapy-induced fatigue will afford me quality time to catch up on sleep and watch re-runs of all of the TV shows I've been avoiding. Spending time in cancer centers gives me an advanced view of state-of-the-art scanning devices and other exciting research and treatment equipment – as a technophile, this greatly appeals to me. A slight chance of death from the cancer adds an edgy flair to life, taking the place of bungee jumping, skydiving, or extreme sports that require much more preparation and time.
All in all, I
consider Hodgkin's lymphoma to be an exciting and fascinating disease full of possibilities and
intrigue. Together cancer and I will serve as companions with unique rewards and the chance for greater collaboration in
the future. Why lymphoma? While this form of cancer may not be appropriate for everyone, in my case I am confident I made the right choice.
******************************************************************
19 April Thursday
The Other End of a Core Sample
(You might want to be careful about reading this if you're squeamish.)
I had seven holes poked in me today: one IV of radioactive sugars for the PET scan, two blood draws, and four bone marrow biopsy cores. I was scared of the bone marrow biopsy, but it wasn't nearly as bad as I had anticipated. It was all done under a local anesthetic with no other sedatives, which I appreciated (I'm fuzzy-brained enough most of the time without extra drugs).
The initial lidocaine injections were the most painful part, and really only hurt for about two seconds each (on the very back of each hip bone, about waistband-level). The coring equipment looks too simple to be part of modern medicine – pretty much a narrow hollow tube they stick a few centimeters into your bone, wiggle around a bit, and pull back out to see what they've captured (okay, it's a little more sophisticated than that, but not much).
The core extraction itself didn't hurt so much as make me cringe for understanding what was happening. Despite the lidocaine I could feel (and hear – ick) the tube going into the bone and I could feel it wiggling around a bit. I definitely felt something unpleasantly odd each time the core was aspirated and extracted – again, it wasn't so much pain as an odd 'bone pricking' feeling. I thought bones didn't have nerve endings on the inside – and if they do, why doesn't the lidocaine anesthetize them?
I was lying on my stomach and it helped that I could pull hard on my hair to distract myself. I don't know what I'll pull on when they do it again in a few months. The technician (RN? MD? – I never asked) took one sample from each side, but had to core on the right side three times before he extracted a good sample. I felt bad for him because I know he felt guilty, but the extra coring didn't really bother me.
I felt bad for Michelle too because she was in the room with me, and I'm sure it sounded and looked a lot worse than it felt. I'm glad she was with me though, because I always feel better when she's around. She said afterwards that it was, "pretty gross and kind of cool at the same time." I married the right person.
I've extracted hundreds of soil cores from archaeological sites, using pretty much the same method, just on a larger scale. I have generally used a trailer-mounted hydraulic Giddings Rig, coring 5 to 10 meters deep on average. This is the first time I've been on the other end of the operation. I examined the bone samples and they looked just like miniature versions of soil cores. I thought about offering to help them interpret the stratigraphy, but I don't know if they would have appreciated that. Maybe I'll be a little more gentle the next time I extract a soil core.
I have a very thick compress under my left arm that makes me feel like a gorilla, holding my arm away from my body. It hurts surprisingly little. They gave me a prescription for Percocet (Oxycodone) so we got a bottle of 30 pills on the way home (a generic brand), but I don't think I'll take any – I haven't even felt like taking any Tylenol yet. Dr. Aft must be a very good surgeon.
The Day I Learned I Have Cancer
Several people have asked
how Michelle and I first learned that I have cancer, and what that experience was
like. I write a daily work log to help me keep track of what I've done, and
below is the full entry from March 27, when I first went to my doctor and he
mentioned the (strong) possibility of cancer. I don't usually write
so much detail in the log, but I felt like writing it all down that evening:
27 March Tuesday
Worked on the Schumann Cemetery Recording Project in the morning.
Wrote another archaeologically-related GIS exercise for this summer's field school (introductory section, dealing with display parameters, custom palettes, etc.).
Today I learned I have cancer.
Visit to the Quincy Medical Group in Pittsfield. Michelle and I have been gone from this area for about ten years, but we remember Dr. James Grote, who served as our doctor when we were here before. We both have a high regard for him as a physician. The Quincy Medical Group is busy, and he was apparently not taking any more patients. I called to make an appointment about a month ago and they were going to set me up with another doctor, but needed my medical records from Arkansas first. I had those sent but didn't schedule an appointment for a while. I called yesterday to get an appointment to see about my lymph nodes (which have been swollen since around the first of this year), and they gave me an appointment with Dr. Grote – good luck there.
I left for the appointment early to do some shopping, and the Beetle broke down on the way. It began losing power on the highway, and wouldn't start after I pulled over - turns out it was the fuel pump. I called Michelle to pick me up, but got the car started right before she got there. She followed me into Pittsfield and the Beetle conked out again in town, so she drove me to the doctor's office. Michelle said later that the Beetle was like Herbie the Love Bug, making sure she was with me that day.
Dr. Grote did a quick physical exam and mentioned lymphoma almost right away – someone my age generally doesn't have swollen lymph nodes without a serious infection or lymphoma. I don't have other signs of a serious infection. Michelle had been shopping in town but was back at the doctor's office soon. Dr. Grote had a blood sample taken and sent me to the hospital next door for chest x-rays. I brought the x-rays back to his office, and there was at least one spot where the lymphs were visible (where they were not noticeably physically swollen). The blood sample showed a slightly elevated white blood cell count.
Grote then sent me back to the hospital for a CAT scan, where they squirted something through an IV into me to increase the contrast. This was a little scary and the injection gave me something like a hot flash. They gave me the results on a CD. When I got back to Grote's office he had already talked to the radiologist and said that the scan showed numerous enlarged lymph nodes all throughout my neck and chest area. Oh well. He is setting up an appointment for me with an oncologist (Dr. Nancy Bartlett, she's a lymphoma specialist) in St. Louis.
I'm usually something of a hypochondriac and research my aches and pains to find out what's going on. It would have been fairly simple for me to look up swollen lymph nodes and to have gone to a doctor much sooner, I don't know why I didn't. I'm glad Michelle was with me today.
Both Elizabeth Edwards and Tony Snow announced the recurrence of their cancers this week. Elizabeth Edwards, Tony Snow, Lance Armstrong, and me. Not bad company.