Yet Another Adventure
The following is a collection of email notifications that I sent to
friends and family in order to notify them of the diagnosis and battle
against my cancer diagnosis and to regularly update them during my trip
down the cancer "rabbit hole." I hope that parts of it may
be of value to you and I hope you will pass this page on to others who
may be going down the same, or similar path, or who is close to someone
A Cancer/Chemo Blog/History
by Beverly Howard, 2013, 2014
In addition, I have compled a web page of cancer coping tips which I learned by going through this oddsey that I hope will be valuable to others facing the same callenges.
I don't know the best solution for a "blog" to keep you
guys updated on my new adventure with cancer... specifically, Stage 3 Non Hodgkins Lymphoma, so, this is going
to start out simply as a web page containing emails that I sent or would send
to all of you guys, plus, a few of the best responses.
Future email updates will contain minimal information but will include a link that
will take you to the beginning of the latest information on this page, so you can
access it immediately after I post it as well as return to it or send
the link to others. ...it will also allow me to correct the inevitable errors.
Everything posted here can be passed on to others
who I may or may not know. While all of it is personal to some
extent or other, I hope it may contain information that might be
helpful to others faced with similar circumstances in their own lives.
Click Here to Send Responses
Links to History and Details
First Message (March 9, 2013)
The Gory Details
Whole Foods for Lunch? (Feb 8)
Links to Update Posts
Scan Results (Feb 24)
Carsten Kampe and Those "I CAN" People
Ports and Other Problems
First Chemo Session (March 14)
Update (March 30)
Let's Start Having Fun With This &*%&*!!! (April Fools Day)
Second Session was a Better Session! (April 8)
Some Good News (April 9)
Adventure to Grind (April 24)
Every Session is Different (May 15)
Rebecca Speaks (May 28)
Good News, Better News, Great News! (May 31)
The "Last Session" (July 1)
An Update from Rebecca (July 25)
Contacts and Questions
Calls, Contact and "Bothering"
Tips & Tricks
One Man's Cancer Survival Tips
Tech Tips For Navigating the Cancer Maze
My First Message to Friends (March 9, 2013)
The following is the first email I sent to friends (and
family.) I am re-posted here for those that may have not gotten it and other
historical purposes ;-)
Not to be too sloppy about it, but you guys have been like family to me,
so, to share a bit of personal information... with friends, as well as
The last three months have been too bizarre to even try to describe. The
beginning shot was the news from a doctor who said it looked like the lump
growing on my right jawbone was a aggressively malignant tumor, and that
information came in the middle of back to back tests and scans in all sorts of
intimidating (not to mention loud and claustrophobic) tubular machines
along with the fact that it seemed everywhere I stopped, someone wanted
to stick a needle in me to either help themselves to my blood or squirt
something inside me to help them look at my guts.
Rebecca and I had weeks to chew on the "malignant and aggressive"
information, so you can imagine many of the thought processes that were
Fortunately, the current diagnosis (after biopsy surgery following all
of the scans) is a bit better, at least by comparison... stage 3
Non-Hodgkins Lymphoma (NHL) so, Monday March 11 at dawn, I started playing the role of a
Borg drone when I got a "port" surgically installed so I could start
chemo on the following Wednesday.
I have no idea how things are going to proceed, but I am trying to look
at it as my next life adventure. If you want, I'll try to keep you
posted, but you may want to consider just asking me, like MacArthur, to
just fade away
Here's hoping that I'm just being alarmist and you will have to put up
with me for at least a couple more decades.
The Gory Details
This saga started simply enough... in the
spring of 2012, following some dental work, a lump appeared on my right
jaw that I assumed was an abscess or other problem related to that dental work.
I was quickly passed through two general practitioners and
three dental offices to an ENT specialist
who concluded that
the swelling was due to a blocked saliva gland. I experienced my
first ride through an MRI "donut" scanner and the ENT submitted a
needle aspiration extraction that, after biopsy, showed no unusual
cells. Using my standard mode of avoidance of all
things medical, I decided to live with the lump, despite the fact that
surgical removal was suggested.
Time ended up dictating
otherwise. The small lump began to show a rapid grow spurt late
in 2012, so, in January, 2013, I scheduled another visit with the busy
ENT and got an appointment on January 29th. As a result of
that appointment, several things quickly transpired. First, I
was immediately scheduled for intimate encounters with three large
During this first appointment of the new year,
bad news began to began to push itself to the front of the
A CT scan two days later on the first of February
- An MRI scan a week after that on the eighth of February
- And a PET/CD scan three days after that on the eleventh
"That Lump Has to Come Out" was the new
To add to the fear factor, I was told that it was
probable that the tumor (as it was now being called) had probably
invaded the jaw bone, so, part of the jawbone would be removed, with the result
that breaking my jaw would become much easier.
The predictions didn't stop there. In the images, the tumor showed that it had encompassed the nerve that
controlled the right side of my mouth, so, in addition to a new look
for my face, I was told that a drool cup was probably going to be a new part of my
My brain shifted into high gear and began to
spend all of it's free time thinking about the "what ifs" of life ...specifically, "life." It was somewhat like a surprise
present for my seventieth birthday which was a convenient marker for
the beginning of this unexpected life cycle.
After the CT scan on the first of February, I decided that I needed
more information, so, I
scheduled another office visit. The only opening available with the ENT was on the day
of the MRI scan. It looked like there might be time to get from
the Doctor's office to the MRI site in time for that scan appointment.
On the day of the appointment, the MRI
appointment was rescheduled and moved back so there was only an hour between the two appointment start times...
...because I had questions I needed answers for, I let the
appointments stand... and, as a result, February 8, 2013 is not a day that will be easily
It was a beautiful day and I knew that parking in the
medical area of Austin can be problematical, so, instead of the truck,
I fired up the scooter and headed up to 38th
Street. As expected, I quickly found an out of the way niche
where I could stash the Honda, and went first to
the MRI facility to get all of the paperwork submitted in case it
turned out that getting to the scanner on time might be tight. I
then walked up to Dr. Scholl's office and faced the inevitable delay
that descended on
Life being what it is, when the ENT and I finally shook hands and began
our talk, it was less than 15 minutes before my MRI appointment over a
block away. I asked that he be frank about his suspicions... he
then I tried to absorb this new information where he felt that the
saliva gland had likely
morphed into an aggressive and invasive cancerous tumor.
After the meeting, as I ran the block and a half to the MRI facility there were too many
thoughts to process efficiently. Donning the backless patient
gown at the MRI facility (whose design likely includes features to limit patient's self
esteem) I began to have my first really serious thoughts about what it
was going to be like when I died.
From an auditorial standpoint, the MRI facility was similar to the
inside of a busy machine shop, or perhaps more accurately, being in a
"close quarters" gun battle. There were at least two MRI machines
isolated in copper clad rooms emitting what sounded like machine gun
bursts along with a cacophony of other high volume "mad machine"
noises. Even so, they failed to drown the new runaway thoughts
during the prep and wait for an available MRI machine.
Fortunately, the fear factor began to be replaced by weird snippets
such as "...well, those pesky migraines are no longer going to be a
After yet another mating with a needle, more blood was sucked and
left in a backless gown with the needle still in place to allow squirting dye into my
innards during the scan.
The MRI facility was cramped to the point that there wasn't
for "patients in waiting" (each wearing their elegant gowns) to be stashed until machines came available, so, a darkened
section of the main hallway was offered as a waiting area for myself
and a thin woman in her early twenties.
The young woman's smile seemed to be hard fought and suggested the
possibility that she might be experiencing similar thought
storms. That realization quickly reframed my situation over to
the understanding as to how fortunate I was to be forced to think
seriously about death at seventy something, rather than twenty
something. Throughout this entire process, each time I spent time
in a medical waiting or infustion room, seeing the dominant expressions
that were the norm in those spaces continued to remind me about what a
life had been for me over the last seven
Back in the darken hallway, the two of us ended up waiting silently in that dim hallway for almost
an hour. The reason for the delay was because another patient was so terrorized by the MRI's
noises that she could not keep herself from moving during multiple
attempts to obtain a usable scan, so, time passed and my chaotic thoughts rampaged on.
After the hour plus passed and I was finally
inserted into the MRI tube, I couldn't blame the twitchy patient who
preceded me. I
barely fit inside the tube and the hastily inserted foam earplugs did
almost nothing to stem the unbelievable volume of chaotic noise coming from
inside the machine. On the other hand, the involuntary claustrophobia
and din of noise sucessfully erased all of those uncontrollable thoughts for
the remainder of the scan itself.
Whole Foods for Lunch?
That extra hour of meditation in the dark hallway
allowed me to make the full journey toward acceptance of the rapidly
appearing chunks and shards of information... or so I thought...
What about Rebecca? That was not going to be easy.
I called her from the MRI facility parking lot and
cheerily asked if she was up to meet for lunch, and, after kicking
around a few choices, we settled on Whole Food's flagship store in central
Austin. As it turned out, she never got more than twenty feet from her car.
Rebecca lost it
when I recounted the doctor's suspicions so we retreated behind the
car and sat on the low retaining wall while she tried to absorb the
same information quickly in contrast to the hours I had available for
me to do
We held each other for about fifteen minutes until one
of Austin's homeless population joined us on the sidewalk bench
directly above us. February 8, 2013 was the terror day for both of us, but, ironically, it was the day that the emerging and evolving facts began a subtle shift.
Full Body PET/CAT Scan and Results
The last of the "machines" that I was fed through before treatment started was a full body PET/CAT scan
to find out how far the suspected cancer had spread. Compared to
the MRI experience, this scan felt like a peaceful reclusive spa environment even inside it's
small diameter tube... plus, this scan came complete with calming drugs.
It turned out that the battery of scans didn't show what had been
expected. There was no visible invasion of the jawbone by the
tumor, so, the ENT's next step was to schedule surgery to extract a
cold section of the tumor for biopsy and set the stage for my first
experience with HIPPA's effectivness at completely shutting down
communication between patients and medical professionals.
He called us at home several days after the surgery on Feb 21 to
inform us that the
scan and biopsy results showed stage 3 lymphoma, and therefore he was
no longer involved in the case, and that I needed to find an
oncologist in order to proceed further.
Dr. Carsten Kampe and Those "I CAN" People (February 28)
Following that call I asked
our friend (Dr.) Kristyn Fagerberg if she knew of an oncologist to
recommend, without hesitation she gave us the name of Dr. Carsten Kampe.
I called wondering if, with such an endorsement, he would even be
available and was surprised to get an immediate appointment. Over the next few weeks we began to understand
how lucky we were to have been connected with Dr. Kampe and Texas
Oncology. (If you live in Austin, you probably know about Texas Oncology from
their "I Can" television advertising campaigns.)
From the time we connected with Dr. Kampe, his primary goal was my
first chemotherapy session and everything associated with it that needed to be accomplished
before that initial session could be scheduled.
Dr. Kampe was been our solid
anchor for the weeks between our first meeting and the first treatment,
and he has fully lived up to the high praise given to him by several
other medical contacts. In my case his accessibility during
several low points in my process was essential to get through the process.
He provided a wealth of printed material in
addition to his consultations. Those reports sometimes came mixed
in with bombs of unexpected
and scary facts and statistics such as some of the information in this report that details and discusses the specific details of the Non-Hodgkin lymphoma (NHL) that I currently carry.
Ports and Other Problems (March)
During the preoperative
physical for my biopsy surgery given by Dr. Dana Sprute
I was also treated to the news that I had a heart murmur. A lengthy echo
cardiogram cleared me for chemotherapy, but came to late to
be a factor in the biopsy surgery. It also explains why my lungs are more and more fond of motorized transport.
before I had never heard
of any "port" that didn't relate to a computer or other mechanical
device, and suddenly I had an operation scheduled to get one installed
in my chest.
Surgery to install the "port" (tip... don't click this link if you are squeamish ;-)
took place on March 11 and was my second experience in less than a month with "production line
surgery." I can attest to the fact that this production line system is founded
on maximum efficiency, but during both sessions at Bailey Square and SurgiCare of South Austin
I found the staff to be supportive and caring throughout the
only negative event (if I can call it that) during the port surgery ended up being the patient
next to me as I slowly regained consciousness in the recovery area. He
was not only obviously enjoying the massive farts he was producing, but
also extremely proud of his loud and lengthy comments before and after
letting each one loose.
Things were moving a bit too fast. I had verbal information that
the first treatment session would probably be scheduled for Wednesday
March 13, but TXO's patient load plus the need to go through an
orientation session raised the possibility that the first treatment
date would have to be put off until the following week. It
quickly became obvious that the staff went above and beyond when they
managed to schedule both for Thursday morning on March 14th.
First Chemo Session (March 14)
Dr. Kampe continued to point out that getting through the first
infusion (chemotherapy) session would mean the end of the continuing
"unknowns" that seemed to pop up every few hours. He was
That first day started by our arriving half an hour too early because we didn't
know what kind of traffic we would encounter, so, we arrived to find locked
doors. Once inside, it only took a few minutes for a technician to put my fresh "port"
to it's first use to extracting yet more blood to document a "base
line" of my body's status before the first chemotherapy treatment. As bizarre
as the needle stuck in my upper chest through a plastic chamber under
the skin seemed at first, it was a distinct improvement over
technicians probing my arms and hands trying to find reclusive veins.
After a fairly short question and answer briefing, the rest of the day
was spent sitting in a recliner while the contents of multiple quart sized bags were routed
through a robot looking pump about the size of a cigar box into the the tubular "dongle" left taped to my chest by the
"base line" nurse technician.
That little pump (which reminded me of Wall-E the robot) and it's comprehensive digital readouts continued,
throughout the day. It's display showed how everyone is now being required to
understand and be able to operate electronic devices. It's
readouts also provided me with a focal point all day that helped me
track the progress as well as give me a solid time line showing my
place during each chemical that was being pumped into my body.
Update (March 30)
Yea... I admit it... my mind's been elsewhere for the last few
weeks. As a result of zero communication from me, several of you sent
emails asking for an update, but I have simply not been "up" to writing
one until now.
Apologies... I promised a number of you that I would keep everyone
updated on what's going on as I proceed into the chemical fight against
Following the infusion day on March 14, it took until Sunday a week
and a half after the first chemo sessiom before my body felt anywhere
near "normal"... or, for that matter, since life started to really "get
interesting" in January. In general, chemo has not been as hard
as expected, but, there seem to be
continuing low points which have stymied me each time I sit down
to document and blog about what's been going on.
This past week started out well but things still managed to keep me
balance, and the past few days have been full of tests to try to pin
down something that's been going on that's kept me from eating and
sleeping. Adding to that was an unexpected problem with my new
and beloved "port" which grew from the size of a marble under the skin
to the bulk of an orange.
In the middle of all of the above, my hair
began to hurt, so, I was not that surprised that a few minutes ago,
it started falling out by the handful. So, having already put off sending any updates for the better part of a month,
I figured out that I better get at least one off since it may be a while
before the next one because of distractions such as this one.
So, Let's Start Having Fun With This &*%&*!!! (April Fools Day)
day after "hair day" (which ended up on, appropriately, April Fools' Day) is our 25
anniversary... counting our other spouses, we've each been married for 40 years total... whoda thunk?
...hell of an anniversary present for Rebecca though.
Based on my one and only chemo session so far, I'm going to be
worthless (and much less than social) for a week and a half following my
second chemo session which is scheduled for the crack of dawn tomorrow
(on April 4) I'm attempting to go in better
prepared, both mentally and pharmaceutically, but, in case I'm not, one
more quick update.
Day" turned into a great mood changer in addition to the fact that the antibiotics
seem to have finally kicked in and knocked down what ever was going on
somewhere inside of me for the last week.
The departing hair was driving me batty as well as making me look like
a malnourished miscreant. In addition to that, I couldn't allow
myself within a block
of a salad bar, so, on Colby's suggestion, Rebecca took the clippers to
my dome on the back patio and we started generating birds' nest
insulation material ...which we left on the stones for the birds to
collect at their leisure. (I know I am going to regret these pictures
It seems that my beard hair is currently keeping a more tenacious hold,
probably since I trimmed most of it to a stubble before the first
surgery, so, I'll save those for another day.
The Second Session was a Better Session! (April 9)
Well, my second chemo session is turning out to be much gentler session (at least so far) to get through.
The primary factors were the prophylactic use of Dulcolax (thanks
Colby) and Prilosec (thanks Carsten) taken over the first two days of
Something (I assume the massive doses of steroids) still succeeds in
generating an increasingly dark mood that peaked yesterday... the last
of five days on steroids, so, today dawned much brigher despite the overcast sky here this morning.
Thanks for all the responses in every form... everyone should know that every one of them is appreciated.
This update is going to be short since I still feel a bit whacked... more later.
Some Good News! (April 11)
One huge positive that has been part of these events is
a physician who communicates. Physicians still made house calls
when I was a child. Since then, we have all seen reductions in
medial communications with patients and HIPPA has recently been another
blockade in these communications. Dr. Kampe's open
communication has been a major factor in our morale as we
proceed. Having run into HIPPA concerns early on in this
discovery process, I took the time during the really chaotic period to
draw up a strong HIPPA release document and distributed it liberally
which may have helped loosen up these communication dialogs.
On Tuesday (Apr 9) the entire morning was dedicated to a PET scan,
which left me exhausted, and I was surprised to receive the following
email the next morning.
Subject: PET/CT scan results - FANTASTIC
Please excuse the impersonal
method of relaying to you your scan results, but I'm sure you would
like to know sooner than later.
As stated in the report, you have obtained a marked positive therapeutic response. This is great news.
Judging from your blog, the second cycle is going better. I'm so glad for that, too.
See you soon,
C Kampe MD
Impersonal??? Hell, that's about as personal as communications get... Thanks Carsten!
The information still sinks in slowly to my still fogged brain and psyche, but, it really made Rebecca's week. (If you are bored enough to want to read the actual PET scan results... click here.)
From Adventure to Grind (April 24)
Well, I'm sorry to say that it only took two chemo sessions to shift my personal viewpoint from "Adventure" over to "Grind."
While the second infusion session itself (April 4) was physically easier (thanks
to several precautions taken in advance) getting through the entire three weeks ended up
being much harder emotionally than the first chemotherapy session.
The medicos assign much of the blame for out of control emotions during
chemotherapy to the huge dose of steroids (prednizone) that are part of
each session and taken for five days.
They say that my liver should
be able to get the prednizone out of my system within a day or so after the last
I'm not convinced my liver is up to the job. Following this second infusuion session, my
emotions have reduced me to a quivering emotional puddle for the entire the
two weeks of this sessiom and the dark moods were still in full swing
during my follow up appointment with Dr. Kampe. (Sorry Carsten)
Tomorrow (April 25) brings my third infusion session which I go into
with much more trepidation but will do so together with a couple of
"happy pills" to hopefully ease the upcoming long day.
Thanks for everyone's responses and feedback. Fortunately, we
don't have any "needs" so, just keep us in your thoughts. The
second session underscored the fact that retreating into solitude seems
to work best for me. (I'm sure the several professionals on
this mailing list are cringing with that assumption ;-)
The simple fact is that most outside stimulus during the two weeks
after each infusion feels like like sandpaper on a skinned knee, so,
Rebecca probably needs more support than I do. (She hides her
feelings well even when I turn into a snapping turtle.)
The shift to "grind" also means there is not much to report... same
old, same old... but with some very dark stuff, moods and words to boot, so, don't be surprised if it's a while
before the next update...
...although you might get a brief update from Rebecca when I finally go completely berserk ;-)
...and, my hat's off to those who have gone through this before me.
Every Session is Different (May 15)
It's been three weeks since my last update, primarily
because I just felt like I have not had anything of value to say.
In addition to that, chronic fatigue has done a good job of keeping me
inactive... such as keeping this blog updated.
The first chemo session hit hard with physically debilitating
punches, session two was
highlighted by knockdown, drag out emotions, and session three turned
out to be defined by a bone tired fatigue that simply won't go away.
One of the things we talked about in yesterday's review session with
Dr. Campe was the fact that both cancer and the chemo infusions
suppress the body's immune system. I already knew about that because of the fact that I had been pulled off of litter box
detail, but now the ongoing impacts are showing themselves... and a big
one is this chronic fatigue.
It's weird... I'll suddenly realize that I have become too tired to do
something simple (such as reading a sentence in an article) so, I make
the logical decision to lie down and take a nap.
When I do that, I discover that while the body is too
fatigued to do anything physical or mental, the part of the brain that
controls sleep hasn't heard about the chemo effects, is wide awake and
in no way will allow me to close my eyes for even a short nap.
Sleep, more accurately, the inability to sleep, often takes center
stage and I begin to better understand how Michael Jackson felt about
his inability to cope with his inability to sleep.
So, I "spurt!" ...take on a project until I can't proceed any further... then lie down
and close my eyes until I finally concede that sleep will not be
achieved... then another spurt... and repeat until I am totally wiped
out that evening and can actually sleep... at least until the call of
nature wakes me a couple of hours later to pump more chemo residuals
out of my system.
As I make the final edits before I post this update, it's obvious that
the fatigue has significantly increased over the past three
weeks. At the moment, even minor activity quickly progresses to
distraction from being overwhelmingly tired and being unable to nap,
sometimes accompanied by sweats that would be normal for extreme
Eating Upside Down
Eating issues are also coming to the front. Crystal
clear food "wants" grabbing my attention all the time, but when I am
actually faced with food or a snack that was irresistible before all of
this started, I find that any food evolves into something totally
unappealing. Egg drop soup has become a mainstay, although I
don't know what to do with the half of egg that's leftover after
preparing an amount that I am actually able to consume.
The food issue gets more pronounced as the day goes on. I
normally skip supper now, and I find that what little appetite and hunger
I have is only there when I first get up in the morning.
Up until today, a normal breakfast has been something
simple like a piece of toast or cereal (gotta have that fiber!) but, by
lunch time, where a sandwich may have seemed attractive before I
pull the ingredients out of the fridge, the assembled result is hard to
face a few minutes later when it's ready to eat, and, by sundown,
Yesterday, Rebecca brought home the
ingredients for a great chicken entree, but, as supper time approached,
the only thing I could stomach was a protein drink, and, as a result, the chicken
dinner plans were put on ice.
This morning, a brainstorm. When I awoke the next day with a bit hunger, we decided to turn
the day upside down, and in a few minutes, Rebecca's beautiful full evening meal
replaced that standard piece of toast for breakfast. I assume a
light midday snack will be in order when the sun is high, then, even if nothing sounds
appealing as the sun approaches the horizon, today's food intake will
be back to a reasonable level... we will report back on how this upside
down approach works out.
Hair... or, Lack Thereof
It's interesting that "hair" is such an important piece
of who each of us "is." Not so much how we view others' hair,
but, how we each view our own hair... or lack thereof.
I didn't think loosing my
hair would be a big deal, but now, each time I look in a mirror as the treatment proceeds, the
person looking back isn't "me" and... I increasingly miss "me."
Rebecca and friends all tell me that I look "good" with my new
hairdo, but, so far, it's been one of the harder parts of this new life for me to
accept... and, that's pretty dumb.
The fact that "chemo brain" has only relatively
recently been acknowledged by the medical community is hard to
grasp. In my case, the correlation between the chemicals and
their pronounced and increasing impact on cognitive processes seems
pretty clear to me. The current mix of chemo brain causes seems equally
puzzling based on my own observations.
Once I accepted the fact that I was "loosing my mind," the techie in me
started observing and trying to understand exactly what was
happening in my scrambled brain pan. Reading the accounts of others and available
literature reported that it is a "loss of clarity, focus and short term
memory" which does not fit my own observations.
For me, chemo brain seems to be the result of my brain loosing the ability to
use familiar synapse paths, so, each thought process is now subject to requiring a new, and much longer, nerve path to
accomplish each required job.
This is particularly obvious when
doing anything physical that contains an "implied" decision such as
"close the fridge door after you grab the milk." Where "close the door" used
to be "automatic" my brain doesn't get there and the door remains open.
The knowledge that I need to close the door is still there, but it may
take my chemo brain long enough so that I am a long way away from the
open door before I remember that I need to go back and close it.
Someone just mentioned attending a seminar on chemo brain where it was
assumed that these results increase with fatigue which has also not
been my experience... the effects are there all day, every day, and,
unfortunately, the are forecast to increase as the treatment continues, but, worse... the wikipedia page notes that the effects hang on for !!!Four Years!!!??? Oh, well... at least I will now have a more concrete excuse for my lapses.
So, tomorrow (May 16) begins the fourth infusion session. ...can't say I am looking forward to it ;-/
A Word or Two from Rebecca (May 28)
Bev tires of blogging, so, a few words from the other side of our partnership.....
Bev is almost halfway through this journey and the path gets
steeper. His GI tract continues to aggravate and since the
surface area of the digestive tract is estimated to be approximately
the area of a football field that's a LOT of aggravation! The
foot and hand neuropathy pain subsides on some days but is always
Every day he gets to wake up to another day of feeling tired, and
some kind of discomfort, but generally feeling lousy, with a
migraine thrown in every so often for extra credit. And still he smiles and
perseveres!! I am so very proud of him for getting up and getting
dressed, for putting on a happy face, for going through the motions.
In the meantime he is more deeply tired more of the time and
thinks he gets nothing done. Here are a few things that have
transpired just since Bev’s last infusion two and a half weeks ago.
- Bev cut through the bathroom ceiling to pin down the location of a roof leak,
worked with the roofer to fix the problem, shopped for parts,
insulation, sheetrock, then he re-sheetrocked the ceiling. While he
was at it he installed a new light over the bathtub since he had never
been perfectly happy with the light in that bathroom since our original fix
- He cut down multiple major branches from around the studio and house
(including a couple leaning on the third story eaves) that were rubbing on the roof or
sides of the buildings during recent blustery days.
- Last Sunday our usual Sunday morning ritual was embellished
when he presented me with a beautiful bowl heaped with hand cut watermelon balls
with my coffee in bed!
- I often find baskets of clothes folded and put away, dishes
washed, laundry done. None of this would be unusual in ordinary
times, but am presently trying to alleviate those mundane chores from
- Then there's Bev's daily monitoring of a plethora of pills,
some required, some to alleviate the effects of others plus the
chemo. This can be a challenge with chemo brain, but he prefers
to stay on top of it himself and does so better than I do my own
unnecessary regimen. He also scours the fridge for something that
might look enticing and prepares most of his own meals ...or snacks as
they might be more aptly called.
- Yesterday, when I walked out of yoga class, I was a happily
surprised to see him waiting, sitting on his scooter behind my car. An
impromptu lunch date. What fun!
Actions speak louder than words
and although Bev thinks he can do nothing these days he accomplishes a
lot AND is doing a terrific job of the most critical thing I can
imagine - fighting cancer!
Good News, Better News, Great News! (May 31)
I'm glad I didn't finish and post the update that I was
working on when Rebecca submitted her piece earlier this week, and I
feel that way because of how low I felt until a couple of days
ago. What I had already written but not posted was
pretty dark and moody. During yesterday's (May 30) follow up
Dr. Kampe, his information and responses were great, and my resulting
attitude and outlook has ramped up from a moody low to the "pretty damn
Last week, I had the second Pet/CT scan since chemo
began and Dr. Kampe reports that the conclusions of the scan and my
blood work continue to show good results from the chemotherapy.
Peripheral Neuropathy in my feet has been a painful,
but tolerable, part of my life for a number of years.
Chemotherapy, unfortunately, creates and aggravates this condition and
the pain has been steadily increasing over the course of the first four
infusion sessions. Last week the pain level had increased to the
point where I was almost unable to walk barefooted. The same
chemicals have also created peripheral neuropathy in my hands and that pain in the fingers has increased to the point that it was overcoming touch sensitivity in my fingertips.
When I presented this information to Dr. Kampe during this follow up appointment,
he noted that in light of the good results shown in the Pet/CT scan and
blood work, it would be appropriate to drop the chemical (Vincristine in my case) in the chemo
cocktail that creates and aggravates Neuropathy
for the remaining infusion sessions since he felt that it was no longer
critical to the success of the chemotherapy. Another point to
underscore how important it is to have complete communication with your
It has been becoming more and more obvious that the chemotherapy
poisons are having increasingly
as debilitating impacts on the body from head to toe, and, at 70, I had
been becoming more and more
concerned that this aging shell may have serious problems recovering
from many of those impacts. Add that to the task of simply
dealing with the ongoing impacts, and I was loosing faith that I would
be able to tolerate the remaining four infusion sessions and seriously considering calling "uncle!"
Early on I had been told that my treatment was to be eight infusion
sessions spaced three weeks apart, ending in August. During this
follow up visit, when Dr. Kampe mentioned that only two sessions
that discrepancy got my attention. Somewhere along the line the
sessions" had been reduced to "six" so, getting that news hit like a
fireworks display and brought the light at the end of the tunnel close
enough for me to see it ...and I again think it just might be
The "Last Session" (July 1)
calendar entry for last Tuesday's final chemotherapy session is a point
in time that friends and family may feel is a time to celebrate, but,
for those receiving infusions, the date is actually just the beginning of a
three to four week process where the body has to deal with the
poisonous chemicals by trying to get them out through whatever exit
port on the human body is available, and then for the body to deal with other impacts it can't fix.
Today is the fifth day of this session and it was with relief that I
was able to take the final "super dose" of prednisone steroids and toss
the empty bottle in the trash can. (I didn't even recycle it as I
didn't want to encounter the bottle again weeks or months down the road
when preparing for a run to the recycling center)
Even as the chemicals work their way through the system, the body still
has to continue to cope with their impacts, good and bad, on the human
system, and that was underscored by the innocuous mention of the future
need to compare my "baseline conditions" before and after chemotherapy
to assess the long term damage from the six infusion sessions. I
still don't recognize the guy in this picture, and it betrays the truth
since I thought I was putting on a happy face when I was snapping this
That Texas Oncology "catch phrase" on their t-shirt has also been part
an evolution in my own perceptions and reactions. I now see more
clearly how the very word "cancer" has a huge stigma attached to
it. The t-shirt forces me to remember my own disconnect from the
TXO TV ads that regularly came on screen before my diagnosis.
TXO gives each patient a voucher for
one t-shirt when treatment begins but I elected to not pick "mine" up
until the chemotherapy sessions came to an end. Not long after I
put it on to take the above picture, I went shopping at our local HEB
and it didn't take long to notice that everyone who I encountered who read the words (and
probably noticed the bald head) would quickly look away to avoid eye
contact... not quite snake pit time, but...
Last Day in the Infusion Room
The name of the game for time in the infusion room is
"distraction." TXO offers TV's with wireless headsets for every
2-3 of their heavy duty "lounge chairs" but I ended up never using the
TV's during the six sessions I attended... too many other distractions
The biggest help came from a small ancient MP3 music player containing
Leonard Cohen, Susan Vega and a few other "stirring" albums. In
addition, my Nexus7 tablet and TXO's excellent wifi connection has been
invaluable and both helped keep this long last day as short as possible.
This session Rebecca baked a divine apple cake for the infusion room
staff which provided a wealth of happy feedback all day. I
brought along a plain t-shirt and a handful of markers and began asking
those I had worked with for signatures when we walked in at eight am,
but, the t-shirt disappeared when things began to get hectic around the time my
chest got punctured with that large bore needle for (hopefully) the
last time and the atmosphere in the infusion room increased to chaotic as it filled to
capacity. As usual, the other attendees included patients who's appearance makes my situation look more like a
vacation than a treatment by comparison.
Most of the other patients receive much shorter sessions than I
did. Where I arrived for each of my sessions to an almost empty
infusion room in the early morning, it would fill
to capacity over the next few hours, but it was always clearing out and
pretty empty again by the time my chemical bags were finally empty and
the needle was removed
from the port in my chest.
This Thursday, after I was "unplugged," I was directed to a different
part of the huge infusion room that I had never entered before, pointed
to a hand bell on the wall and asked to ring it to commemorate my end
When I took the bell off of the wall and turned to start ringing, I was
stunned to see over twenty nurses, technicians, administrators and
others who had worked with me over the past months had gathered to hear
the bell and chime in with a variety of their own noisemakers.
As I rang the bell, I felt and heard a sob next to me. Rebecca
had completely "lost it" and was crying uncontrollably which
effectively slammed home how much harder the entire process had been on
her than it had been on myself.
The blank t-shirt reappeared, now with over two dozen signatures and
well wishes. Even with those, I know of at least a dozen other
staff who worked with me who
didn't get to sign it.
It's now limbo time. Experience shows that I have another two to
three weeks of discomfort to pass, followed by who knows how long to
assess the unavoidable damage to the system that has been
wrought. Probably the hardest trip will be the waiting and
wondering if the cancer is really in remission.
This year has brought me in direct and indirect contact with many
others who have gone down this same path in some form or other, and
while the majority have had good outcomes, some, including a couple on
this mailing list, have not been so lucky. Fingers crossed...
An Update by Rebecca... (July 25)
I'm posting this since Bev has not had the energy to write.
We knew from others not to plan a big celebration at the end of chemo. We
understood the journey was not quite over. However neither of us were
prepared for just how depleted Bev would be after the end of the chemotherapy
sessions. The psychological relief of no more chemo was heartening, but
the utter exhaustion day after day - after day - since the last chemo session has been a
On July 14th, when Bev's cycling fever couldn't be abated, (he was on oral
antibiotics at the time) he went to the ER, was admitted and ended up staying overnight.
Home again he tries his best to eat, even though everything tastes
disgusting and he has a forever bad taste in his mouth.
He seems to finally be getting incrementally better. He is of
course frustrated by the excruciating slowness of the process. It
has now been almost a month since the last infusion session. Any
small task or accomplishment still requires a recuperative rest -
sometimes for the rest of the day! I try to help him remember to
thank his body for each miniscule thing it does. We have a lot to
be grateful for. I will be especially grateful the first morning
he gets to wake up feeling like himself.
Peach Fuzz (August 27, 2013)
It's not much as far as hair goes... it's "peach fuzz"
just like the facial hair that teen age boys search for in the mirror
that will signal their transition into manhood. The hair that was
stolen by my very first chemo session finally shows signs of returning.
As mentioned above, I didn't think that loosing all of my hair would
make much of a difference, but seeing a hairless stranger every time I
saw my reflection came to epitomize the total loss of control imposed
by cancer and chemotherapy. As a result, now seeing the white
shading that's returning to my dome comes as a hopeful sign that the
drugs consumed over the past several months are finally receding.
As time progressed and the new hair established itself, it became
obvious that while it was "hair" it was not "my hair." The
texture and style was completely new to me, and I find that many other
chemo patients, and hair cutters, say that sometimes it can be
radically different than what people had lived with prior to
My personal theory is that when you loose your hair to
chemo, it gets reassigned to another patient who's just coming out of chemo, and,
when I was finally allowed to regrow hair, what I got back from a new
patient somewhere out there was hair from the Malcom McDowell line.
Remission (January 7, 2014)
When you "do the math" using the last two dates, it's
evident that I have been "gone" for a third of a year since the last session and unable to
post any regular updates.
Recovering after the last chemotherapy session ended turned out to be
brutally hard. In addition to needing to be hospitalized as a
result of the dibilitation, I elected to cancelled all of my follow up
appointments and tests for over two months because I felt that they were simply
beyond my capability to endure.
Fatigue along with the inability to complete even minimal physical
tasks took most of those four months for me to feel that I was actually
"recovering" from the treatment. I'm still weak and regularly
elect to nap in the afternoon, but, it finally seems that things might be
During yesterday's "half year" checkup, the news was
good. Since this is still all new to me, I had to go back into the office after the appointment and
specifically ask if my cancer was "in remission," and the answer was
yes... in fact, Dr. Kampe's specific answer was an emphatic "YES!"
"Remission" is an interesting term. The cancer is still there and
always is within every cancer patient. In complete remission, all signs
and symptoms of cancer have disappeared, although cancer is assumed to
still reside in the body.
However, at this point, the news sounds good and I will take it.
I really want to share a large amount of information that was learned
the hard way throughout this trip down the rabbit hole that is cancer,
so, I am still working on a web page containing many tips that were
helpful for me and might be helpful to others who may have to take the
same trip. The project has become larger and more difficult that
I imagined, but I will post a final entry here when the page is
In the mean time, if any of you or anyone you know needs help or information, please let me know.
Thanks again for everyone's support throughout this oddsey,
Click to Send a Comment, Response or Complaint
Remember, if you want to be dropped from the list, let me know.
On the same subject, let me know if you don't want parts of your past
and future responses to these updates posted here.
Calls, Contact and "Bothering"
When this all began in January, I went into
communication overload and
I was an emotional basket case by the time March arrived. As a
result, by then I had pretty much withdrawn into isolation mode.
diagnostics came in and the findings were discussed with us, it
crystallized the event. Most of you then got an email that explained
what Rebecca and I were going through and, at least for me, that
full communication about the lymphoma and anything else going on in my
If you feel like communicating, please do... with either or both of
us. If I can't cope with it at the moment, I'll be sure to let you
know*... however, write or call only if you want to have fun... no doom
*fwiw, the need for me to say "no" to an outside request came up during
my third infusion,
and, it turned out to be one of the most difficult communication
difficulties so far.
So, if I'm not up to any request and say so,
if my response comes across as ambiguous please pursue it until things
are clear and understood.
I'm openly soliciting responses and I will assume that it's
ok to repost them here unless you specifically object. Click the
link below to respond... it should work unless you are using a webmail
Can I Help?
Some of the nicest parts of difficult times are the
unexpected gifts and contributions when you least expect them... In
addition to a couple of fully prepared and delivered meals,
mashed potatoes and even an artwork of orchids and various other gifts,
friends have contributed time and effort in educating us about many of
the subtle aspects of the medical and human side of the adventure.
Wanting to help and support is a great response to anyone's "bad
news" It's even a big topic in the many "coping" articles that
new cancer patients are given along with all of the other
The good news for us is that, even after the first
treatment cycle, the need for help has been minimal. Rather than
needing to have someone to accompany and distract me during treatments,
it seems that retreating into a mediative state seems to work better
for my coping
structure. Since we have elected to do everything here in Austin,
even covering for overnight absences (pets, etc) has not been a need so
The time for help will probably come, and we are banking on the fact
that we can call on the many of you who have, and may, offered to