Journal

Journal entry by William Hudson

This is hopefully my last “Caring Bridge” post as I am now pretty much in a routine “watch” mode. In the past few weeks, I have had full blood work, a comprehensive suite of stool tests, a colonoscopy (with some biopsies) and an abdominal CT scan.  All results are either “normal” or “unremarkable”.  CT scans will henceforth be on a 6-month cycle with consultations with my oncologist staying at 3 months before dropping to 6 months and then annually. Appetite, taste and weight are doing well though I am still coming to terms with a somewhat unpredictable and occasionally stressful GI system. Muscle mass and cardio functions are gradually coming back but very slowly. It will probably take at least a couple of years and even then, getting back to where I was from a fitness perspective, is probably unrealistic. And I am totally A-OK with that. I have redefined the playing field and am comfortable with where I am in our “new world”.  

 I have never chosen to talk “statistics” with my medical tam. There are very few reliable studies on cancer of the Ampulla of Vater. The mortality figures for full-blown pancreatic cancer are indeed grim but I had a different type of cancer, a small and localized tumor, successful resection, clean margins & lymph nodes, aggressive postoperative chemo & radiation and a recovery that certainly seems to have impressed the doctors. There is always the possibility that some of those aggressive, malignant cells have already taken a road trip to other parts of my body but for that, we shall just have to wait and see.  In the meantime, I plan on being at the distant tail-end of the mortality curve.

 As always, the patience, compassion and concern of all the nurses and doctors, family and friends has been truly humbling.  Wherever your own family and friends are on your priority lists; make sure they are at the top.

 

Patients and caregivers love hearing from you; add a comment to show your support.
Show your love and support for William.
Make a donation to CaringBridge to keep William’s site up and running.

Journal entry by William Hudson

I remain convinced that the Whipple surgery, massive antibiotics, chemotherapy and abdominal radiation made drastic changes to my digestive system’s microbiome.  Sure enough, when the results of our participation in the American Gut project (St. Thomas’ hospital at Kings College, London and the UC San Diego medical school) came in, my suspicions were confirmed.  Frustratingly, the exercise was, on their own admission, a worldwide data-gathering exercise and included absolutely no interpretation of an individual’s results or recommendations based thereon. You can see from the diagram that my profile is far from “normal”.  Specifically, the most common bacterial phyla in the human gut are Firmicutes and Bacteroidetes.  Of the top ten phyla in my own profile, the former represent only 2.9% of the total (Sharon is 57%) and only 10.5% of the latter (Sharon is 28.9%).  Conversely, my profile is dominated by Proteobacteria at 82.1% (Sharon has zero). 

 Why on earth would I care?   Well, in pursuing my ongoing gastro-intestinal issues, I would love to be able to take the results to the next step and be able to identify specific probiotics that are tailored to my own gut repopulation needs.  Or even identify the “perfect donor” for a fecal transplant. Sadly, the science is not there yet.  In fact, since two transplant patients (same donor), died a few weeks ago from a drug-resistant infection of Escherichia coli, the FDA have clamped down on the procedures in the US.

 In the meantime, my gastroenterologist ordered various analyses (all came back normal) and she will perform a colonoscopy in the next few weeks. For now, she has suggested experimenting with Cholestyramine, Hyoscyamine and Xifaxan (separately) to see if they help.

 Other than that, things are going very well indeed and all other side effects of the treatment have now disappeared. I remain sub-par with respect to cardio-vascular ability and rebuilding of muscle mass but that is to be expected and will most take a couple of years to get back to where I would like to be. In the meantime, our trip to Europe was good and involved lots of walking. Tomorrow, I leave for a week’s riding in Colorado while Sharon is at music camp in North Carolina.  Another milestone: the longest time we have been separated since diagnosis !!!!.

 

Journal entry by William Hudson

Last week, I had my routine check-up with my oncologist that produce a minor scare but with a positive outcome. She thought that might be some inflammation of my under-arm lymph nodes so off I went to Austin Radiological for an ultrasound with a prescription for a contingent biopsy.  Anyway, the ultrasound results were normal.  Scare over. I appreciated Dr. Hudson being ultra-cautious.

 My blood work was good. The anticipated (post-surgical/chemo) anemia now appears to be under control. My red cell count and hematocrit numbers are now normal tho’ the hemoglobin value is still a tad low.  Non-fasting blood sugar was good.  I did ask both the nurse and the doctor why no fasting was required for the blood work but they reiterated that fasting is only requested for potentially diabetic patients. All other blood values within range. 

 Tumor markers were normal (although they never showed up in the initial diagnosis last year) and my PSA (somewhat controversial prostrate test) was good. She recommended a routine colonoscopy which I shall take care of when we return from Europe.  She also suggested probiotics, a psyllium fiber supplement and Lomotil (diphenoxylate and atropine) for ongoing diarrhea. The latter is a controlled narcotic and so I shall only use sparingly.

 

Journal entry by William Hudson

May 23rd will be the one-year anniversary of my Whipple surgery and I am now about 4 months from my last chemo/radiation.  What a year it’s been.  On balance, things are going extremely well.  I am gaining strength and rarely have “bad days” …. most are now “good days”.   Taste and appetite are gradually recovering and my weight has stabilized at about 160 pounds and I am totally OK with that. Ironically, my appetite for beer and wine has not yet returned. What’s a fellow to do in a pub?

 The excruciating right chest/shoulder pain which started after surgery and continued for about 6 months has now all but disappeared. A neurologist friend I talked to, was not at all surprised (though my oncologist and surgeon had no explanations). As mentioned in an earlier post, it was most likely “referred pain” when the source (my abdomen) is distant from the pain. He explained that the reason is that there is indeed a known neurological connection between the abdomen and (always the) right shoulder/chest which dates back to the development of the fetus "in utero". This is also why right chest pain is a very common symptom of gall bladder problems. Amazing.

 Most side effects are now contained except rather dramatic diarrhea which still occurs several times a week.  The GI issue is not a pleasant topic but one which many Whipple survivors have to contend with on a daily basis.  Lomotil/Imodium seems to be ineffective. My main concern is the high anxiety when I am out and about, obviously if distant from a bathroom.  As mentioned in an earlier post, with all the surgery, antibiotics, chemo and radiation, all the “good” bacteria in my gut have been well and truly zapped.  I am convinced that this may be the root cause of the problem.  My plans point-forward are to (1) seek advice from my GI doctor (2) analyze the results of a microbiome study I am participating in (3) get some empirical data as to whether Creon (pancreatic enzyme supplement) makes any difference (4) keep better records as to whether GI issues are a function of my diet (5) seek advice from an “oncological dietician” (6) determine whether I might have Lactose intolerance (7) investigate the wisdom of a fecal transplant …. yes, you read that correctly.  Oh dear, I hope this site does not become my “poop blog”.  Enough of that.

 Our life gradually returns to some level of normality. On Sunday I will (hopefully) complete my first half-century bike ride since this whole sorry episode started in April of last year. Then at the end of the month we leave for Europe for a month. Back in time for Sharon to go to a music camp in North Carolina when I go for a week’s riding in Boulder, Colorado. In November, we go to Morocco for various adventures, one of which will be another bike ride from Tangier to Fez.  If you wonder why cycling is still such a crucial part of my life, remember that I had to “qualify” for the life-saving Whipple surgery; not all candidates are deemed eligible. Key reasons for the willingness of the surgeon to go ahead and for my subsequent fast recovery, was an above-average level of fitness, thanks to the miles on the bike.

 Thanks so very much for your ongoing support and patience in reading this stuff. It’s quite therapeutic to write things down and the Caring Bridge site makes for a wonderful journal. I do so hope that your summer is a good one.

 

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.

 

 

 

 

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

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

Site created on April 24, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

SVG_Icons_Back_To_Top
Top