Journal

Journal entry by William Hudson

So … the good news is there is not much to report. I am now six weeks out from the end of my treatment.  I still experience some residual side effects: mainly GI havoc in the mornings, occasional acute abdominal cramps and still the chest/shoulder pain that can be quite agonizing but thankfully very brief. The unexplained shoulder and upper right chest pain may be “referred pain”. Referred pain means that a problem exists somewhere else in the body other than where you feel the pain. According to the literature, causes of referred shoulder/chest pain may include abdominal problems (gall bladder, pancreas, stomach) or abdominal surgery.  So …. that’s my theory anyway.

My weight has stabilized at around 154 so weight gain seems as though it will be a long haul.  I continue to ride a little: on the weekend I managed 30 hilly, windy miles and so felt quite proud of myself. The oncologist is quite pleased.  As a cancer survivor, I might be susceptible to other forms of cancer and so we included a PSA (prostrate test) in my last blood work and it came back at 0.7 which is good. We also decided to schedule a colonoscopy in a few months.

Sharon and I have become fascinated with the work of Tim Spector who is a Professor of Genetic Epidemiology at St. Thomas’ Hospital (Kings College, London).  One of his specialties is studying the microbiome and he initiated and directs the crowdfunded British Gut microbiome project. It expanded to North America via the University of California at San Diego. Sharon and I “volunteered” and duly paid our donation and submitted samples.  UC will produce a genetic profile of out intestinal bacteria and compere our results to the general population.  Had I known about this project before treatment, I could have done a before-and-after comparison. One has to believe that given the surgery, the intravenous antibiotics, the chemotherapy and radiation that my guts have been subjected to, the good little critters in the intestinal system have been seriously zapped.  That might explain my ongoing GI problems. I will  repeat the tests in couple of years to see if there is a significant change in the results.

Tomorrow we leave for Costa Rica. Kayaking, mountain biking, white-water rafting, hiking and zip lining are all currently scheduled. We shall see, but remember that 70 is the new 50 and I am dammed if I will be an exception.

 

 

 

 

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Journal entry by William Hudson

On Friday, 11th January, I had my last radiation treatment and took my last oral chemo pills; hopefully forever. It’s been a tough nine-month journey for both Sharon and I, starting in April of last year.

 Initial symptoms > GI follow-up and the endoscopic retrograde cholangiopancreatography (ERCP) procedure > diagnosis of an aggressive, but limited, malignancy in the Ampulla of Vater > the complex and dangerous Whipple surgery > an eighteen-week protocol of intravenous and oral chemotherapy > a six-week protocol of radiation and oral chemo.

 The only residual issues at the moment are occasional severe pains in the upper right side of my body (chest/shoulder) and some remaining GI side-effects from the oral chemo. It does not seem likely that its either a cardiac or oncological issue. Gallbladder problems sometimes cause neurological pain that can extend to the right shoulder and/or chest. Of course, I no longer have a gallbladder but the nerve connections might still be there? Either the phrenic nerve (neck to diaphragm) or the vagus nerve (brain stem to colon) could possibly be involved. Watch this space. And …. on Friday I go into the Dell Seton Teaching Hospital to have my infusion port taken out ….. yeah !!!!

 2018 can be looked at in one of two ways:

      Glass half-empty: in 2018, I was diagnosed with potentially life-threatening cancer
      Glass half-full: in 2018, I was “cured” of cancer

 Of course, I do not think that we are totally naïve. Doctors generally do not like to use the word “cure” when it comes to oncology. Cancers can return and, if they do, are often more serious than the original malignancy. However, I was “surgically cancer-free” after the Whipple and we deliberately chose the aggressive option of prophylactic chemo & radiation. As I have said before, we are shooting for 20 years, not two. The next five years will be critical as recurrences are most likely to occur within this time frame. So far, we have never really talked about prognoses. Not because our heads are in the sand, but because getting a true apples-to-apples analysis is almost impossible. The sample population would have to be ampullary patients treated in the last 5-10 years, have a similar condition, were in the same state of initial general health etc. etc.  Whatever the prognosis, our goal is for me to be at the far-right tail of the mortality curve.

 And my soap-box preaching now looks like this:

  1.  For most things medical, get your internist or family practitioner in the loop at the beginning. Do not self-diagnose and immediately rush to a specialist.
  2. Do not ignore seemingly unrelated and possibly minor symptoms. Without advocating paranoia, go get yourself checked out.  Then you, and your medical team, can “connect the dots”.
  3. If you have insurance (and I am fully aware that many people, tragically, do not), the US medical system works but there are instances when you do have to be your own advocate.
  4. Put things in perspective. 99% of the things that keep you awake at night, do not matter a hoot.
  5. Be totally shameless about asking friends and family for help but be diplomatically selective if necessary: good care-givers must be part of the solution.
  6. However bad things are, the chances are that there are other folks facing much tougher mountains to climb. Most of them handle their own unique challenges with remarkable courage, optimism and cheerfulness. Be inspired by them.
  7. If you are a care-giver, make sure you take good care of yourself, both physically and mentally.
  8. Healing is a complex process. A key component is the unwavering support of family and friends.

 And so to the future. My complete recovery will be long and that’s totally OK.   My primary goals are (1) to establish the “new norm” which hopefully will include a well-behaved gastrointestinal system (2) to diagnose and treat my upper body pain (3) to transition back to a “healthy” diet and put on about 20 pounds (150 > 170) of quality body-weight (4) to regain muscular and cardiovascular fitness that allows me to ride with my cycling buddies again (5) to regain our lives, including our semi-nomadic world travelling (6) not to forget what we have just been through and the lessons learned.  

 And just to reiterate one more time: every single person who has read or commented on this Caring Bridge blog has been part of the solution and for this, both Sharon and I are so very appreciative.

 

 

 

 

 

 

Journal entry by William Hudson

Yeah ….. I am now half-way though radiation …. today I had session #16 of 30.  There is now, barring any bad news, light at the end of this particular tunnel. Of course, the hope is that this is the last cancer tunnel I shall ever endure though, realistically, I am no longer on the normal curve for the population as a whole. The next five years will be critical.


 It’s been educational monitoring my blood work thought the whole sorry episode. Initially, when I first went to Dr. Shah (internist), my bilirubin and liver enzymes (SGPT and SGOT) were very high which indicated a dysfunction of the common bile duct. This turned out to be due to the bile duct blockage by the tumor. As soon as the stent was implanted, these numbers dropped to normal. Now, of course (post Whipple), I don’t have any bile ducts to get blocked but the liver seems to be functional again.


 The Whipple surgery played havoc with my platelet and red cell counts, primarily due to blood loss. These numbers then recovered although I now have slight anemia again due to the chemo and/or radiation. My various white cell counts have remained within normal limits throughout and my kidney functionality also remains normal.


 I am not sure about the effectiveness of what’s left of my pancreas to produce insulin. My glucose levels are up (possibly borderline diabetic?) and I have no clue whether other pancreatic parameters such as amylase/lipase/elastase levels or the C-peptide test are even relevant in my case. Room for further consultation when my oncologist is back from maternity leave.


 Marty asked about the protein intake. I think that a “normal” diet includes about 50 gram/day. My dietician suggested a daily goal of 100 grams (a friend is on a weight-control diet that shoots for 150 gm./day). That sounded easy-peasy but it’s not entirely straight-forward. Typical amounts are 6 gm. per 1 large egg, 23 gm. per 8-oz. serving of Greek yogurt, 23 gm. per 3-oz. serving of salmon, 23 gm. per 3-oz. serving of steak etc. etc. Some protein bars are OK, most protein “shakes” are disgusting (think drilling mud).


 And, as any of you on FB already know, my 70th birthday present finally arrived.  Now I just have to figure out how to use it.

Have a peaceful holiday season and, if at all possible, spend time with family and/or friends. Trust me, they are important. 


 


 


 


 


 

Journal entry by William Hudson

 My radiation therapy started last week. It was supposed to be on the Monday but was delayed until Wednesday due to imaging problems ..…. they could not align my liver ….. go figure. The techs cannot proceed unless the CT imaging confirms that the targeting is 100% accurate and consequently risk-free.   The procedure is actually pretty easy even though the equipment is somewhat reminiscent of a medieval torture chamber. I lie on a gurney with my arms above my head. A wide belt with a ratchet is fitted over my abdomen and is then tightened. Final tightening is completed by partially inflating the belt. This prevents my abdomen from moving during normal breathing. A huge circular ring device then rotates around me, taking the CT scans which are then interpreted to allow the techs to proceed. The radiation itself follows which is only about a minute or so.  Zap, zap, zap.

 So far, no real side effects though I am told that the fatigue might be cumulative over the coming weeks.  I take oral chemo (Capecitabine) which is supposed to increase the effectiveness of the radiation.  Side effects of the chemo are manageable although there are occasional cataclysmic reactions of my GI system which you do NOT want to hear about.  Blood work continues to be excellent. Perhaps more about this in a future post.

 My dermatologist excised the “severely dysplastic compound nevus” on my back yesterday morning. She was pleased that it had been found and could be treated. Although not malignant per se, they can be a precursor to melanoma.  Stiches out in a couple of weeks.  So .…. that’s now taken care of. Dr. Mason does not believe that there is any genetic relationship between the dermatological issue and my ampullary cancer though I will be on six-month, full-body exams for the next few years.

 There was an interesting NPR segment on proteins the other day.   As a 70-year-old male and a (one-time) keen cyclist, there is an argument for a fairly high protein diet anyway. As previously mentioned, during surgery and treatment I lost over 20 pounds, much of the loss being muscle.  A generic protein requirement is of the order of 50 grams/day but while in final treatment and recovery, the dietician advised as much as 100 grams/day to rebuild my level of physical of fitness. However, the author of the NPR segment considered that protein supplements are probably unnecessary for most younger people. One would never think so from the racks of protein bars in the grocery stores.

 

 

 

 

 

 

Journal entry by William Hudson

Yesterday was one of many milestones this year: the 6-month anniversary of the draconian Whipple surgery that Dr. Fleming so ably performed in May.  The other milestone was a couple of weeks ago when I completed the first chemotherapy protocol …. hopefully, no more infusions ….. yeah !!!!!!  I am now coming to the end of my three-week “rest” and on Monday I start the second protocol which is a radiation/chemo combination.  I have already been to the clinic for the radiation prep. work which is primarily “targeting” to ensure that they do not inadvertently zap other critical organs (liver, kidneys etc.).  Let’s hope that their aim is good.

 I finally began to feel better toward the latter part of my “rest” period.  GI system broadly under control, decreased fatigue, no abdominal pain, increased appetite etc.  The weight issue continues to be a challenge.  What does that mean quantitatively?  Before all of this rigmarole started, a “good” weight for me was about 172 pounds. At the time of the Whipple, I was about 154 pounds. I am now hovering around 148 but stable.  I now realize it will be well into January, a month of so after the treatment hopefully finishes, before I can expect a reversal of the trend.

 The weight loss manifests itself in various ways.  Because of the decrease in body fat, walking barefoot in the house is slightly uncomfortable and when we go out to restaurants, I always seek out the chairs with cushions: sitting directly on one’s ischial tuberosity can also be uncomfortable after time. Of course, much of the weight loss is muscle and, together with a decrease in my level of cardio fitness, this means that my super-modest bike rides are somewhat sobering. Tiny little hills (“walnuts”) now produce shortness of breath whereas before, they would have been unnoticeable.

 I have always been a responsible patient; routine physicals, go to the doctor when necessary etc. but I have never been paranoid or a hypochondriac. Now, on the new playing field, I have to re-learn to be a responsible patient without overly worrying about the slightest thing that could be a symptom of a bigger problem. This was tested twice recently. 

 As I have met my insurance annual “out-of-pocket” max, I thought that I might as well go-ahead and have a routine dermatological exam that was overdue anyway. The doctor found a “severely dysplastic compound nevus” (aka an atypical mole) on my back that was biopsied and is due for surgical excision in a couple of weeks. These are apparently somewhat difficult to diagnose but can be associated with an increased risk of melanoma.  Modern research is constantly finding possible genetic relationships between various forms of cancer and there is a well-documented association between melanoma and pancreatic cancer. Who knows if this is also applies to cancer of the Ampulla. More on this later after the excision.

 And then I have my radiation baseline tomography (CT) scan the other day which finds on my lungs (1) “non-specific, subpleural ground glass opacities” (!) which is “hazy increased lung opacity through which vessels and bronchial structures may still be seen” and (2) a “benign intrapulmonary lymph node”.  Who knows, but these things do cause one to wonder.  More questions for the oncologist.

 Stay off the internet, William.

 We trust your Thanksgiving for our American friends was a peaceful time with family and friends. Appreciate them …. they are so very, very important.  In the meantime, ignore the White House rants whenever possible and keep your fingers crossed for a 2nd referendum across the water. Whoops, sorry. This is supposed to be a non-partisan forum.

 

Journal entry by William Hudson

Today was a landmark day …... the end of chemotherapy infusions.  I now have a week of oral chemo to wrap up Phase One. By way of celebration I got hugs from the nurses, showered in glitter-confetti and the right to ring the survivor bell.


Then I can look forward to three weeks of rest and recovery before I start Phase Two which is six straight weeks of radiation and oral chemo (five days a week).


I continue to tolerate things quite well. I still have (some of) my hair, no nausea, a generally manageable, albeit it unpleasant, GI system etc. In fact, the nurse-practitioner today said she would not even know I was on the Capecitabine/Xeloda oral chemo because its rare that patients do not suffer from discoloration of the hands.


Sharon and I are otherwise both well and continue to appreciate the compassion and kindness of all our friends and relatives.


 

Journal entry by William Hudson

It has been sometime since a CB post from me. As you know, I am currently finishing up with Cycle 5 of the 6-cycle chemo season. Side effects continue to be manageable; mainly GI issues that sometimes shut me down for a couple of hours, usually early morning.


 I then have a “rest” from 5th November to 25th November, following which I start the radiation/oral chemo protocol.  5 days a week, hopefully early mornings, for six straight weeks till the 9th January when I am, hopefully, totally “done”. Side effects of this protocol are unknown but likely to be ongoing GI issues from the oral meds. plus, the possibility of increased fatigue.  So far, overall, I have been tolerating treatment very well.  My mental attitude continues to be positive (except about the politics on both sides of the Atlantic which is wholly depressing).


 We did unravel our Xmas/New Year Costa Rice trip but have rescheduled for the end of February. Hopefully, my guts will be behaving by then!  We did make a trip to Lafayette a few weeks ago but the long drives (even though Sharon does the driving) do rather wipe me out.  We shall probably stay fairly close to home until all this is over. Ginny (Sharon’s niece) and her boyfriend, Jeremy, will be here over Thanksgiving.


 Sharon continues to be a Super-Star. She occasionally makes long foraging trips searching for nutritious food that her oh-so-picky hubby will actually eat. My appetite is still rather pathetic though eating has long since ceased to be downright unpleasant. I am so very pleased that Sharon is resuming her “life” as best she can. She arranged a really successful music jam last weekend, she has taken up going to her yoga and fiddle classes etc. again and volunteers regularly at the Austin’s Beto office. Sharon is also calling a couple of square dances, including one at the upcoming String Band Festival.


 Warning: inappropriate strong political bias follows. I go to help out at the Beto office also though not on a regular pre-scheduled basis. It’s a wonderful, therapeutic environment there. All like-minded, positive, staff and volunteers; all there for one reason only, to rid Texas of the scourge of Rafael (Cruz) and to replace him with a young, positive, inspirational alternative;. It’s rather reminiscent of the moon landing. After Kennedy’s 1961 commitment, if anybody at NASA, from mission director to engineer, from admin. assistant to janitor, was asked “and what is your job here”, they all had the same, identical response: “We are putting a man on the Moon”. Rant now over.

As always, our friends and family continue to be supportive, compassionate, patient and accommodating. You might not appreciate how important this is to us both. Trust me, we do. 


 


 

Journal entry by William Hudson

On Tuesday, Sharon and I had an appointment with a radiation oncologist, Dr. Carl Nuesch.  From the get-go, we had been told that the Full Monty would probably include conventional (photon) radiation if we are pursuing maximum longevity (at least statistically). The radiation, like the chemotherapy, remains an “insurance policy” rather than a cure for a known, identifiable condition.


 Dr. Nuesch started by clarifying that the surgery went well but that a T3 grade was serious lesion. Any recurrence would most likely be local and usually cannot be resected.  Dr. Fleming (my Whipple surgeon) leaves a “road map” for the radiation oncologist to target the “surgical bed”, that is, the area where the original resection was performed.


 During the procedure, I would be immobilized on a treatment bed and subjected to targeted, high energy X-rays which kills both good and bad cells. However, the normal cells will repair themselves within 4 - 6 hours whereas any remaining cancer cells do not.  The treatment takes place 5 times/week for about 6 weeks. It’s quite a difficult area to treat due to natural movement from breathing: this creates a moving target.  To deal with this, breathing is restricted to the upper lobes of the lungs using abdominal compression.  The other challenge is due to the proximity of other organs but the radiation is targeted in such a way that is shuts down if other organs (liver, kidney, bowel etc.) come into view. The procedure only takes about 7-8 minutes.


 The main side effect of radiation is fatigue. However, I will continue to concurrently take oral chemo (Capecitabine) which increases the effectiveness of the radiation. Long-term side effects are supposedly minimal. The short-term measure of success is being able to administer the appropriate dose of radiation for the case. The ultimate measure of success remains the lack of a recurrence for which scans are taken every 3 months (at least initially).


 In addition to the conventional photon (X-ray) radiation there is also a proton (positively charged atoms) therapy during which no radiation is administered until it reaches the target. The closest location for this option is Dallas. There appears to be very few studies which provide compelling evidence that one is better than the other. The proton therapy is unquestionably more targeted. However, as there is no specific target known, a slightly less-targeted treatment might be advantageous. Because I am surgically cancer-free, no other treatments such as immunotherapy present themselves at this time. This could be a different situation if a there is a recurrence.

Given that my chemo finishes in early November, the radiation will take us through the holiday season. We will thus, after all, have to unravel our Xmas/New Year trip to Costa Rica which had included mountain biking, white-water rafting, kayaking, hiking and zip-lining !!!  We have not yet contacted our travel company to explore other, less ambitious options after the holidays. 


 

Journal entry by William Hudson

Sharon and I went to see a radiation oncologist today and it looks as though that is the path we will pursue after the chemo is finished. More about that in another post within the next few days. Otherwise, things are chugging ahead: at the end of next week I will be half way though the chemo protocol. Yeah !!!!


 Weight continues to be stable although the Missus is tired of looking at a scarecrow in rags and so I suspect a few items of clothing might be on our shopping list.  Hopefully, one day they can be consigned to the Goodwill bin as I eventually regain my healthy weight.


 My gastro-intestinal system continues to be a challenge but is manageable although the other day my guts had a pitched battle with a smoked salmon sandwich.  The sandwich prevailed.


 We made a quick to trip to Fort Davis last week for the annual hummingbird festival. I was so glad that Sharon was able to hang out with her birding buddies and take a break from the somewhat monotonous Austin scene. I went along for the (long) ride but did not participate in the activities. However, hanging out in FD with my laptop was A-OK.


 

Journal entry by William Hudson

So sorry I have been rather remiss with recent updates even though there is not much new to report. Thanks so much to all who have been checking-in during my silence. My “new normal”, at least for now, could be worse. I think I am surgically fully recovered. Ongoing “GI issues” are here to stay until the chemo is over and/or until my “replumbed” intestinal tract has really settled down. This could take another six months or so. On the positive side, I have suffered no nausea, hair loss or peripheral neuropathy, all of which are not-uncommon chemo side effects.


 Each intravenous chemo session is preceded by blood work to confirm that it’s a-OK to proceed. There are many parameters that are measured. When I started chemo, my white cell count was 6.4 (normal = 4.8 – 10.8), red count was 4.3 (4.7 – 6.1) and neutrophil % was 53 (40 – 77). During chemo, these numbers dropped as low as 3.4, 4.02 and 30.8.  They recover somewhat during my week off.


  Next time I see the oncologist (20th) we need to start the discussion on what’s next. Nothing, more chemo, radiotherapy, immunotherapy, experimental test programs …. many possibilities. The challenges remain the same: minimal science to point us in the right direction and lack of clear benchmarks with which to measure success. I do not like the idea that the definition of success is lack of a recurrence.


  Sharon and I continue to walk, ride or work-out at the Y in the mornings. All my extended medical team stress the importance of moderate exercise. Our lives are rather restricted and quiet these days but that is what it is. I am so pleased to see that Sharon has resumed her musical activities, her mosaic work etc. I am so very keen for her to lead as normal life as is possible.  She remains, of course, the most compassionate caregiver on the planet.


 

Journal entry by William Hudson

I know that at least some of you are aware that there has been a recent medical scare with yours truly.  Initial symptoms were loss of appetite, loss of weight (circa 12 pounds), tiredness, discolored urine (I knew you wanted to know that).  Subsequent symptoms were minor body rash, “bloated” feeling in stomach and itchiness.  Lots of tests …… blood, urine, CT-scan, MRI and an endoscopic retrograde cholangio-pancreatography (ERCP). 


The MRI was not for the faint of heart and/or those suffering from claustrophobia.  45 minutes in a freezing-cold "body tube" (think a body-sized cigar tube) that has only a couple of inches of clearance all round.  Edgar Allan Poe must have designed it.  Then a series of deafening noises ..... think Armageddon.  Good job my cardio vascular is pretty good as I had to perform a whole series of 20-second breath-holding exercises.


 The ERCP was an hour’s procedure under a general anesthetic.  The anesthesiologist excelled in his primary function of keeping me alive throughout.  During the procedure, the gastrointestinal specialist located a bile duct blockage, cleaned it out (sounded disgusting but you know how I am about bodily fluids), inserted a temporary plastic stent and took various biopsies.  Within hours, my initial symptoms improved.


 At this stage we were cautiously optimistic as the radiology results were generally good (some dilation of the ducts but no “mass”). Then today the GI-MD called to advise that the biopsy did reveal “rare malignant cells consistent with pancreatic adenocarcinoma or pancreatic cancer that is isolated to the papilla”.  I have been referred to both an oncologist and a surgical oncologist. The hope is that the malignancy is both early and local enough such that a surgical solution may be feasible.


 That’s all we know at present ….. personal communications still welcome despite this relatively impersonal form of communication.  If I am expecting calls from the medical team, I might not take the call but please do leave a message.  I will be sharing with many people but feel free to share the Caring Bridge site if you think somebody might have been inadvertently omitted.


 

William’s Story

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