Celebrating the love and lives of two beautiful people

I just wanted to take the opportunity to recognize Janet’s unwavering dedication to David’s well-being, and everything she did to ensure his final days were as peaceful and dignified as possible.  Whenever David was anxious or in pain, she would often rub his back and take him on “vision” walks; to recreate the many beautiful hikes they took in Colorado.  She guided him through every step, so he could experience the views, smells, and sounds again through their shared imagination…and that brought him so much joy.  She continued even in the final moments, and although he wasn’t able to respond, it was our belief that he heard her.

Our entire local network of friends and neighbors did everything we could to help; aided by the unending support from loved ones around the world.  But in the end, Janet gave her all to the love of her life.  She was (and is) incredibly strong, and that helped reassure David, the fierce fighter and protector, that she would be OK.

David, you have the incredible fortune to be loved by so many, especially in finding your amazing wife Janet.  Our world is a bit darker now without your light, but we know you’ll continue to watch over and protect all of us.  Thank you for your friendship and for enriching all our lives.  And thank you Janet, for helping David to be with us for the precious time we enjoyed.

Howard

Journey's End

This morning as dawn was breaking, our David left us.  It is actually very meaningful to me the hour that David left us ... at the break of daylight & I think I heard him say ... "I'm off to swim babe!" ... as this was the time of day that he would head to the pool to join his friends for a swim, which was one of the greatest passions in his life.

David's wishes were to be cremated & then remain with me until I join him in death.  We then want our ashes to be joined together along with those of the kitties we have shared our lives with over the years, with a third of the ashes to be placed in the Pacific Ocean, another third on the Mt. Rose Trail (in the Lake Tahoe area), and the final third on what we referred to as "our chapel" (because we renewed our wedding vows there a few years ago) on the Almont Triangle Trail in Colorado.

There will be a Celebration of Life for David at some point in the future ... if I can secure the venue I want on short notice, then in mid-November, otherwise sometime in January or February.  As the details get worked out, I will continue to post that information to this blog.  And, as our cousins, Rick & Keith, posted in comments on this blog, writing can be therapeutic, so I may continue to intermittently post an entry as it pertains to things that you all might want to know about David.  

Please know that David loved his family & friends very much, as do I.  Hugs, Janet

Status Quo

So David's condition hasn't really changed since Tuesday ... he continues to be comatose.  He has received no fluids or nutritional supplementation of any kind since he ate lunch around noon on Monday, but apparently since he was previously holding so many fluids in his abdomen & legs, these fluids are shifting for his body's use, so he is not becoming dehydrated, which is keeping him from progressing towards his journey's end.  I continue to change his position every few hours, give him liquid morphine & ativan every few hours to make sure that he doesn't perceive any pain or agitation, & keep him cleaned up.

What has changed over the past 24 hours is my emotional status.  I'm feeling very angry over David's  pointless comatose state.  If David were aware of his current situation, he would be extremely upset & heartbroken that it is causing so much distress for me.  In my opinion, this is an area where veterinary medicine is far superior to human medicine.  I think that in this sort of situation we treat our pets much more humanely than we treat our fellow man/woman.  Even executed criminals are provided with a lethal injection, but my kind, gentle David must linger in limbo waiting for the remainder of his organs to shut down one by one.  I don't understand the medical standards & societal conventions that think this situation is acceptable ... David is still going to die, but now I will be permanently scarred by what has transpired over the past several days & may continue for the next few days.  I may regret posting this blog entry, but it is what I am dealing with today.

Hoping for peace soon, Janet

He Battles On!

David's fighting spirit is so engrained in his core that even in an unconscious state he battles on!  He no longer can be awakened, even when I move or turn him in bed, but that strong heart of his keeps beating.  The Hospice nurse is coming daily to assess David & provide us with any supplies needed & I have had visits from a social worker & a bereavement counselor to address my emotional needs.  Neighbors & local friends are checking in on us regularly ... they are all at the ready & fully engaged to help in any way possible.  I've been told that the sense of hearing is very often intact in this comatose state, so we have been listening to several of our favorite Pandora stations ... yesterday was Enya & today has been Bread & The Carpenters ... I'll happily take suggestions for a Pandora station we should listen to tomorrow.  I've also been reminiscing out-loud with David about the years of our life together ... laughing about some of the goofy things we have done together that we probably shouldn't have done, recalling some of our best trips & happiest moments, reflecting on our careers & the businesses that we built together & subsequently sold, & reminding him that there were some things that we should have done more.  But, for the most part, our journey together has been outstanding & there is really very little of it that I would change if we had the chance to do it all over again ... that is a satisfying feeling ... no regrets!  Hugs, Janet

Nearing The Journey's End

David is nearing the end of his life.  Over the weekend he battled with significant nausea & vomiting of bile.  Yesterday around noon, he ate a little soup, talked to his brother Carl on the phone, & napped in his recliner all afternoon.  Around five, our good friend Jane came to help me toilet David & get him to our bed ... he was extremely weak, non-conversational, & following directions poorly.  This morning he can be awakened, but is completely unresponsive.  He has had nothing to eat or drink since noon yesterday.  He doesn't appear to be in any pain or discomfort ... just sleeping.

We all know how incredibly strong David is, but I don't think he can, & I hope he doesn't, linger like this for very long.  There is nothing anyone can do for us right now ... all that could be done for David, has been done over the past many months & all that can be done for me, I know will be done in the months to come.

I'm keeping this very short as I want to spend this remaining time close to David.  Hugs, Janet

Extremes

Over the past week we have experienced the high & low extremes that life holds.  On the high end of things, David celebrated his 65th birthday on August 22nd.  Our day kicked off with a big "Happy Birthday" banner & 65 balloons in our backyard that our neighbors had dropped over our adjoining fence in the wee hours of the morning!  Then we were graced by a visit from Mom Hager (from Florida), sister Mary (from Illinois), & Mary's daughter, Mattie (from Minnesota).  What you need to know about Mary is that wherever she lands, a party & fun times ensue!  Before we could turn around three times, she & Mattie had decorated our house, carried in an array of food (which included a birthday cake from our favorite bakery!), & had numerous gifts for David to open.  So, there was much laughter & enjoyment to be had on David's special day!  David also enjoyed visits from several of our neighbors as well as phone calls & texts from family & friends from around the country ... it was a day & a weekend as well where he was surrounded by love!

On the low end of things, David woke up yesterday with a fever (on IV antibiotics), feeling lousy, & with a bit of confusion.  Over the course of the next few hours, weighing options, assessing David's overall medical status & quality of life, David made the very tough decision to stop treating the infection in his biliary tree & go on Hospice services.  Today we officially signed up for Hospice services & tomorrow we will receive visits from the RN who will be David's Case Manager & the Social Worker.  The only services out of the ordinary realm of Hospice services that David will be receiving is a weekly paracentesis until we can get a permanent drain placed by the interventional radiologist so we can drain the fluid from David's abdomen at home on a regular basis & periodic checks of his cholecystostomy tube with tube replacement as needed.  Even though we have known that we would eventually need Hospice services & have interviewed several different companies, this transition has been a very difficult one to make & has caused a great deal of angst.  Hopefully we can find some peace with this decision before too long.  

Wishing you all a safe & fun upcoming Labor Day Weekend!  With hugs & love, Janet 

Happenings Over The Past Week

Here are some of the highlights of what has happened over the past week.  On the medical front, we have decreased David's infusions of albumin from twice a week to once a week ... time will tell if once a week will be enough to keep his circulating albumin at an adequate level to keep him from having significant swelling in his legs, ankles, & feet.  We queried our top two Hospice choices about whether we could receive Hospice services while continuing IV antibiotics, IV albumin, & a weekly paracentesis (the three interventions that are keeping David ticking along) & the answer was "no".  These interventions are seen as treatment & Hospice is strictly a comfort care service with no treatments being provided.  So, for now, we have decided to continue these treatments & hold off on Hospice services.  On Saturday (yesterday), David had a recheck abdominal CT.  We have no results yet & are scheduled to see Dr. Fanta this upcoming Wednesday to find out about how much evidence of cancer progression is seen on the CT & the infectious disease doctor on Friday to find out about how the liver abscesses / infected bilomas & biliary tree are looking.  All of the other medical issues that David is battling (pain, nausea, fatigue, & weakness) are relatively unchanged & fairly well controlled with our arsenal of drugs.

We celebrated our 41st wedding anniversary last Monday with a quiet day together without any medical appointments, which in itself was wonderful!  One special thing that we did do to commemorate the day was to make a plaster cast of our hands with the help of some dear friends ... it didn't turn out too bad!

We had a visit this past week from one of Janet's brothers, Mike, & his wife, Dee, who live in Florida.  We have had many adventures with them over the years so it was nice to reminisce about those & to just spend time together.

David also had the opportunity for some short visits with his Masters Swim Group friends who provided us with meals over this past week.  So, our social calendar was about as full as we could handle!

Many thanks to all of you that follow this blog & provide us with support & love via phone calls, texts, emails, & snail mail!  This long battle is becoming more difficult, but your kindnesses are most definitely a help!  Hugs & love, Janet  

Let's Catch Up!

I'm going to try something new, with the operative word being TRY ... time will tell if I succeed.  It has been several weeks since I last made a blog entry & while there have been many things that have changed, when I have had a chance to sit down & try to catch up the blog, I have become overwhelmed by all that I have wanted to share to catch all of you up & I ultimately couldn't finish getting a post entered.  So, I am going to try to share what is going on presently (which means there will be many things that have happened that will go untold) & then make shorter entries more often.

David is still battling an infection within his biliary tree.  He is currently on a newer generation antibiotic called Avycaz, which we administer at home every eight hours by way of a two-hour drip to gravity IV.  This is a cumbersome routine (especially the 12:30 to 2:30 AM run!) & it is tricky scheduling all of his outpatient medical appointments between the early morning & late afternoon runs, but hopefully it will be beneficial in treating the infection.  In addition, he is still doing IV Daptomycin, but it is only a 30 minute infusion once a day ... easy peasy!  There was recently a discussion between the infectious disease doctor, the interventional radiologist, Dr. Fanta (David's oncologist), & Dr. Lowy (David's pancreatic cancer surgeon) about anything more that interventional radiology could do to try to drain the abscesses / infected bilomas in David's biliary tree.  The interventional radiologist feels that there is one abscess / infected biloma that she could place a drain into to try to help clear the infection, but the remaining two to three (maybe more) abscesses / infected bilomas are too small for her to place drains.  And, she has a high level of concern that with the amount of ascites (abdominal fluid) that David has present, there could be leakage of infected material around a drainage tube which would set David up for a nasty peritonitis (infection in his entire abdominal cavity).  This is not a risk that we are willing to take, particularly since David has made the decision that he doesn't want to be hospitalized again.  So, for now we will see what kind of job the antibiotics can do without any drainage.

David continues to have a large volume of ascites, which he gets drained once a week.  This past Wednesday he had five-and-a-half liters of fluid removed.  He has been receiving IV albumin twice a week to help control the amount of edema (swelling) that he has in his legs with pretty good results.  His albumin level has come up on blood work & while he continues to have a moderate amount of edema in his feet & ankles, he only has a minimal amount in his calves & thighs, which is a great improvement.  We have queried his oncologist about the possibility of decreasing these infusions to once a week from twice a week ... we don't want to lose ground on the progress that has been made, but one three-hour infusion of albumin a week sure sounds better than two!  Now that David is taking an extended release narcotic twice a day, his abdominal / back pain is pretty well controlled & he rarely needs a short acting narcotic for breakthrough pain.  Nausea is something he battles almost daily, but he has several anti-nausea medications that work pretty well for him & allow him to eat an adequate amount of food.  We are also experimenting with trying to get smaller amounts of food into him more frequently rather than eating three full meals a day ... it seems to work better for him, but is again difficult to consistently do with all of his outpatient medical appointments.  Fatigue & weakness continue to be a bother & he has recently been short of breath with minimal exertion (most likely due to his significant anemia, small amount of pleural effusion -- fluid around the outside of his lungs -- & the degree of ascites that distends his abdomen & makes it more difficult to take a deep breath).  If his anemia gets much worse, he will require a blood transfusion ... let's hope that isn't necessary.

We have been discussing Hospice services more seriously over the past couple of weeks & interviewed a third company.  We have narrowed the choice down to our top two & plan to make some more inquires to these two companies this upcoming week about some specific questions we have regarding David's ongoing care (can David be on Hospice services & still receive IV antibiotics, IV albumin, & a weekly paracentesis).  It is a hard realization to face, but Hospice is in our near future.

Our good friend, Jane, has mobilized the Masters Swim Group to bring us meals.  Every three days (or sometimes more often) we are delivered a wonderful meal / array of food that lasts us for three to four meals.  Not only does this keep us in food, it also allows David a quick visit with whoever is delivering our food, which is a huge bonus as David misses his swimming buddies!  Additionally, we have had visitors from afar.  David had a wonderful catch up with some of his veterinary radiology friends that visited us a few weeks ago & brother, Carl, came from Colorado for a quick visit this past week.  We are lucky to have such thoughtful & attentive friends & family!

On Monday, David & I will celebrate our 41st wedding anniversary.  While we don't have any fancy plans, we also don't have a single medical appointment, so we will enjoy a rare quiet day of just being together.  David's health issues certainly don't afford us many advantages except maybe this one ... to experience a love so deep that nothing can diminish it & the day-to-day little annoyances that the best of marriages encounter rarely bother us.

Here's hoping that I will be able to keep up my new goal of making more frequent blog entries!  Hugs & love to you all, Janet

Discouraged

On Thursday, David had a recheck CT.  The good news is that his cancer looks pretty stable with little evidence of progression.  The bad news is that the infection in his biliary tree & the liver abscesses / infected bilomas are unchanged with no reduction in size.  So, despite nearly six months of IV antibiotics & the placement of a new & improved drainage tube into his gallbladder (the old tube had become dislodged, so a new tube was placed that has numerous holes within the tube to allow increased drainage & it has been placed so that it not only drains to the outside of his body, but also drains into his common bile duct), it appears that we are no closer to being rid of this infection.  To say that we were discouraged by this news is an understatement!!!  Following the CT study, we met with the infectious disease doctor.  She was discouraged by this situation too & her fear is that without being able to obtain better drainage of David's biliary tree, we may never be able to clear this infection.  And, so far, none of the doctors that we have seen believe that there is a realistic, safe way to better drain the biliary tree (they are worried that anything more aggressive that they might try to better drain the biliary system would make David's situation worse & potentially shorten his life).  The other concern that the infectious disease doctor has is that we are running out of antibiotic options.  The bacteria have become resistant to all of the previous antibiotics that David has taken over the past six months & they will soon become resistant to the current antibiotics that he is taking, & there is really only one more viable antibiotic option that we have available to use.  This was heartbreaking, gut wrenching information to receive.  For now, we will continue on the twice a day Ciprofloxacin & Daptomycin for another three weeks, at which time the bacteria will most likely be resistant to these antibiotics, so we'll then change to what may be our last line of defense against the infection.  In the meantime, we are trying to get in to see our interventional gastroenterologist to see if he might have ANY ideas about how to better drain David's biliary tree that isn't highly risky.

On other fronts, David is having a paracentesis (drainage of the fluid within his abdomen) done weekly (with removal of four to six liters of fluid each week); has started receiving IV albumin twice a week to help mitigate the fluid accumulation in his legs (it seems to be helping as we can now see his kneecaps again!); has returned to using long acting narcotics to combat abdominal pain; continues to have intermittent nausea; & overall is slightly more fatigued & weak.  While none of this sounds good, he continues to enjoy his audiobooks, beating me in various games, visiting with family & friends, & snuggling with Jasmine & me!  This upcoming week we are looking forward to a visit from good friends & fellow veterinary radiologists, Jim Hoskinson (besides being friends, Jim & David were business partners for several years & Jim is traveling all the way from Hawaii to visit), & Larry Kerr (Larry was one year behind David in their veterinary residency program at UC Davis & they climbed Mount Rainier together on two occasions).  We are very touched that they are coming for a visit & I'm sure some stories (maybe more like tall tales!) of their glory days will be flowing!

As always, many thanks to those of you who continue to stay present in our lives with your visits, phone calls, texts, & emails -- we so appreciate hearing from you!!  Hugs, Janet

The Usual Suspect

On Wednesday, we heard from the infectious disease doctor.  The culture from the aspiration of the liver abscess that David had done the week before revealed enterobacter (which is what we have been dealing with since at least the previous aspirate done in March & probably since January), which has become resistant to a long course of Zosyn antibiotic that David had previously & partially resistant to the Ertapenem antibiotic that we have been doing most recently.  In addition, the culture revealed enterococcus & citrobacter.  So, on Thursday, we switched to two different antibiotics -- Vancomycin & Ciprofloxacin.  We are administering both medications via IV at home twice a day.  The Vancomycin runs for 60 minutes & the Ciprofloxacin runs immediately afterwards for 70 minutes, which is a more cumbersome routine, but hopefully it will be more effectively too!  From 8:00 to 10:10 in the AM & again in the PM, David has IVs running.  The PM dosing is not so tricky as we are usually home during those hours anyway.  But the AM dosing is going to be tricky as we often have medical appointments during those hours.  Luckily, we have years of experience of trekking medical supplies with us that David needs throughout the day, so maybe it won't be such a big deal!

In general, David is feeling just okay.  He continues to deal with ascites (fluid in his abdominal cavity) that needs draining every two weeks & we may need to increase the frequency to every week.  His albumin level continues to be low, so he also tends to have edema (swelling) in his feet, ankles, & lower legs.  He is often fatigued (probably due to his ongoing anemia & the fatigue that accompanies having pancreatic cancer) & over the past couple of weeks has been having intermittent nausea & pain in his right upper abdomen & back.  And, of course, his bowel issues are something he deals with on a daily basis.  Despite all of these annoyances, his passion for life is still strong.  He is enjoying his audiobooks, his photography, walking 2 to 3 miles every morning when possible, visiting with family & friends, & cuddling with Jasmine & me!!  Our lives have certainly changed a great deal over the past six months, but we are still grateful to be together in this fight!!

Enjoy this summer weekend & know that we appreciate the support & caring we receive from you in whatever method you choose to be present in our lives!  Hugs & love, Janet