Yet Another Adventure
A Cancer/Chemo Blog/History
by Beverly Howard, 2013, 2014

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 who is.

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)
Peach Fuzz
Remission

Contacts and Questions

Calls, Contact and "Bothering"
Help Offers?



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 family.

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 generated.

Fortunately, the current diagnosis (after biopsy surgery following all of the scans) is a bit better, at least by comparison... stage 3 Non-HodgkinsLymphoma (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 Dr. Scholl 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 I scheduled another visit with the busy Dr. Scholl 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 machines;
During this first appointment of the new year, bad news began to began to push itself to the front of the discussions. 

"That Lump Has to Come Out" was the new headline.

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 wardrobe.

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 Dr. Scholl was on the day of the MRI scan.  It looked like there might be time to get from the Dr. Scholl'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 forgotten. 

It was a beautiful day and I knew that parking in the Seaton 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 that appointment.

Life being what it is, when Dr. Scholl and I finally shook hands, I had less than 15 minutes to get from his office to the MRI site over a block away.  I asked that he be frank about his suspicions... and then I tried to absorb his information where he felt that the swollen saliva gland had likely morphed into an aggressive and invasive cancerous tumor.

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 (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 bother."

After yet another mating with a needle, more blood was sucked and I was 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 room 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 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 great ride life has been for the last seven decades.


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 claustrophobia and 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 the same.

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, Dr. Scholl'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.

Dr. Scholl 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.



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.

A week 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 process.

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 partially correct...

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 lymphoma.

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 off 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)

 The 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.

"Hair 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 the treatment. 

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 dosage hit.
  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)

Fatigue

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 exercise.

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, nothing seems edible.

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.

Chemo Brain

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 present. 

Every day he gets to wake up to another day of feeling tired, and in 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.
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!

Rebecca Roberts


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 session with 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 good" level.

Good News

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.

Better News

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 doctor.

Great News!

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 remained, that discrepancy got my attention.  Somewhere along the line the "eight 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 achievable.


The "Last Session" (July 1)

The 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 self portrait.

That Texas Oncology "catch phrase" on their t-shirt has also been part of 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 and options.

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 of treatment. 

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...

Stay Healthy


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 surprise.

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.

Rebecca



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 treatment. 

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 getting better.

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 ready. 

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,

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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.

When the final 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 transition re-opened full communication about the lymphoma and anything else going on in my life.


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 and gloom.

*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 interface.

Blog Responses

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 coping information. 

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 far.

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 help.