Sandy update and the circle of life

Hi all,

This is a difficult letter to write, so I'll keep it brief and to the point. If you've followed this blog, then you know that Sandy was recently diagnosed with prostate cancer. It turns out the cancer that Sandy has is very aggressive and has already started to invade his urethral canal which is creating his bathroom difficulties, and there is reason to believe it will also spread to other places quickly (if it hasn't already). We've consulted with both vets, and today I was present for a ultrasound with another doctor who is an expert in this field.

Unfortunately all the evidence points to the same thing - the tumor is starting to degrade his basic bodily functions and there isn't really anything we can do to improve that. Tim had appointments in Mass. today, but we spoke after the ultrasound and we've decided it's time to let Sandy go, since in many ways it seems his body has already decided that. This may sound strange unless you've personally experienced this, but both Sandy and Samantha have done things recently which seem to indicate they both realize it's time to let Sandy rest. This will likely happen in the next day or two because there isn't really anything we can do to ease his discomfort, although thankfully there's no evidence he's in significant pain.

On behalf of Sandy, Samantha, Tim and myself, I'd like to express our many thanks for the many kind wishes for Sandy's recovery. Your kindness and support is a great blessing.

Our best to all,

Carla

Latest on Sandy and clutzy me

Hi all,

My apologies if you're waiting to hear back from me about something, but I'm very behind on my emails and such because we're sort of focusing on Sandy right now. As you know Sandy is also my pet therapy partner at Mercy Hospital. Here are the latest updates:

If you've been following this blog you know that we've been working with both our regular vet and an oncologist specialist (and both of them are contacting labs and other resources to get additional opinions). I've also been doing quite a bit of research online at recommended medical and vet sites. Just after his diagnosis we started Sandy on Piroxicam - a pill taken orally each day to try and control the growth of the tumor. After additional discussion we decided to start him on the 4-treatment series of intravenous chemotherapy as well to hopefully maximize his longevity and comfort.

Unfortunately, we ran into problems with Sandy's body's response to the cancer drugs (stomach ulcers from the Piroxicam, and colitis and bladder infections due to his weakened immune system), so then the oncologist vet prescribed other drugs to try and treat the complications; but that just seemed to make it worse. We're working with both vets (and thankfully, our regular vet has consulted IDEXX and other sources as well for other opinions). We've stopped all cancer treatments and reduced the drugs to the bare bones to two - antibiotic to fight the infection and antacid for his stomach.

But the biggest concern is for the last 2-3 weeks he's pretty much just stopped eating, and no matter what we try, we can't seem to get that to improve. Presently the only food we can seem to get into him is this canned food I squirt into his mouth with a big plastic syringe (not a needle, just a pointy thing) - but sometimes he doesn't even want to do that. I can't really say I blame him, because between colitis and bladder infection he must feel pretty miserable. Although you'd never know that to see him when we go for walks and such, so it's very confusing.

We're not sure if the antibiotics to cure the infections aren't working because his body is resistant to them, or if perhaps the urinary and digestive tract issues are being caused by the tumor instead of the infections - but the latter is starting to look more likely which of course is not good news. We've scheduled another ultrasound tomorrow (Thursday) to hopefully at least find out for sure what is causing his current difficulties with bathroom functions - in hopes we can make a more informed decision about what to do next, or whether there's even anything we CAN do without him suffering unnecessary discomfort. Sorry to run on but as you can see that's where my head is right now.

And silly me fell down the steps last night (guess I let myself get a bit distracted) and twisted my right ankle pretty good. That's the 2nd time I've fallen down that same section of stairs since we moved into this house (from the top down to the first landing at the window and the "turn"). The good news is I didn't sail through the window and land in our neighbor's yard below. :>) I think I need to get myself one of those child safety gates or something to remind me there are steps there.

That's all I can think of for now, but many thanks for the many kind wishes and messages of support. They help more than you know. Our love to all!

Best, Carla

Ode to Montana from Kirsten

Hello all,
I recently received this email from an awesome friend and writer Kirsten from VA. Kirsten and I met in Montana in 1992 when Tim and I moved to Bozeman upon his acceptance of a position at ILX Lightwave in Bozeman. I was surprised to discover that a high school classmate, Rhett (Kirsten's husband) also lived in Bozeman and that he and Kirsten had 4-year-old twins, Aaron and Jonathan. They have been wonderful friends to us since then and we miss them much since they now live in VA and us in Maine. Kirsten works as a counelor specializing in eating disorders and Rhett is a Physics professor where he recently received the "awesome professor" award at a local university! Thanks to the Internet, we've been able to stay in touch and Kirsten recently sent us this email about their recent return to Bozeman. I think she does a great job of capturing the essence of being in Montana, so I wanted to share it in our blog. Thanks Kirsten! cy
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Hi.

I want to tell you all about the awesome trip we had to MT. Here's the summary:

After an 18 hour trip from Roanoke to Bozeman on Saturday, Dec. 30, we finally arrived. The next day we drove to Fairmont Hot Springs which is near the scenic town of Butte, MT (famous for having the largest open pool of arsenic from gold mining and having about 3 restaurants that *aren't bar/casinos). Fairmont is a large hotel that squats over a large indoor pool and a chilly walkway to a heated outdoor pool. Outside there's also a superheated pool (wonderous) and a 5 story water slide. Our first night we were quite entertained that my hair literally *froze* and turned to ice while my body was nice and warm in the pool. We played, swam, went down the slide, and ate mass quantities for two days.

Then we left Fairmont on Tuesday and came back to Bozeman. We visited old haunts-our neighborhood, house, the kid's school, the University, the Physics dept, the kid's preschool (which had totally "shrunk" according to the kids). Being there brought back a lot of memories of things the kids had forgotten which was fun to see. The owner of our house probably thought we were robbers or terrorists after pulling sideways into their driveway, staring, taking video and still pictures. The neighborhood looks much the same. The mailboxes that assaulted my car have been shored up. We were able to see an old friend of mine, Gini, and briefly catch up and we went by our church. It was funny to hear the kids over and over say how "huge" something was and how much smaller it was now. We ate at the best pizza place in the universe (MacKenzie River pizza) where they have the "Branding Iron" pizza which makes your mouth burn in a so delicious way. The kids had their doubts about the pizza but they all dissolved as they ate the weird combinations (like barbecued chicken).

There are things I'd forgotten about MT. When you're not in the mountains, the roads are freakishly straight. It seems like you can see forever. It's hard to estimate distances-whether you have one minute or 20 to go. There is a certain amount of physical discomfort that you have to suck up every day. Toilet seats are cold. Buildings are rarely kept as warm as they are in VA. Even though it was only in the 20's to 40's (warm) just the cold walking from place to place is bracing and it takes *hours* for the car to heat up. If you forget to rub lotion everywhere your skin HURTS. Mine woke me up one night. I remember that I learned to dress appropriately (and we were mostly prepared) but that I had learned to block out the discomfort while we lived there most of the time. I love the frontier decor-rough hewn wood, dead animals on many walls, antlers, many decorations and pictures around the MT animal theme or snow. I'd love to live in a house with that decor (minus the dead animal carcasses). The people are thinner, in better shape, and hairier. Dress is far more casual. Restaurants dress codes can vary from "casual to elegant" which cracks me up. I saw no one dressed elegantly in those restaurants. Most people looked like they just woke up or walked off the ski hill/ranch. They were universally (OK, except for the car rental dude) friendly, cheerful and helpful. Very different from anywhere else I've lived or visited.

It's always interesting to watch Aaron and Jonathan and how they interact. You can clearly see that special relationship they have as twins. They do things I know they're not aware of. They have a lot more frequent body contact than normal siblings. When they were in the water they played games bumping and wrestling. On the ski slope they would lean on each other or bump each other. It's hard to explain because it looks so natural. It's as if that normal boundary of where one ends and the other starts isn't nearly as thick as it is with nonmultiples. They had an exceptionally thin membrane between them when they were in utero (which was cause for concern at one point) so all they know is having the other there. They miss each other at college but have regular contact. They almost never fight but they are different in so many ways. I'm crazy about both of them.

With some trepidation we drove up to our ski chalet off Bridger Bowl. It was described as a "rustic" A-frame. Rustic in MT usually means rough hewn wood (check), dirt as part of the decor (no check) and heat is for sissies (thank God, no check). Part of rustic was that we were completely unplugged-no cell service, no internet. We were there to face ourselves, each other, God and the mountain. The A-frame reminded me of a spaceship. To get to it, you had to climb up, what seemed to be miles, of mountain goat-inspired stairs to the cabin (on parts of it I had to hang onto Rhett's coat and let him drag me since I hadn't worn ridged shoes). I couldn't breathe, really, after climbing up them once. The men were strong and brave hauling our stuff up there. Once there we seemed to be in a A-frame spaceship. There was a main floor with an A of all windows looking out on the snow and mountains, a kitchen, a 1/2 bath for midgets and small living area. Then you climbed up teeny tiny elfin stairs to the top of the A where there were two beds with the roof right over them. Going down from the main level, you opened a *hatch* (held heat in downstairs) and climbed down more treacherous elfin stairs (part of the charm) where there was a full bath (with its own heater-yea!), a large living area and entertainment system, the captain's quarters (the only bedroom with a door and it had a queen size bed) and 4 bunk beds. The decor was all MT and skiing. You could ski down to the ski lift and at the end of the day ski back to the cabin.

Rhett and I of course took the captain's quarters, Jonathan slept at the top of the A and Aaron in one of the bunks. Everywhere there were blankets (many with critter designs). You could have piled them to the ceiling if you wanted. When I woke up on our first day my personal monitors were flashing all red lights and informed me I had far exceeded my operational parameters and I wasn't going *anywhere*. I ached from head to toe and had wobbly legs (there was a lot of walking and climbing at Fairmont and on our travel day). God blessed us with a scenic snow storm and I had books. I felt such peace, such gratitude as I rested and soaked in the Montanishness of it all. Rhett got up and skied early (freak) and came back later for our boys who had needed some beauty sleep.

My first day on the slopes, the next day, I had a horse/ski whisperer named Ric who gave me a 90 minute solo lesson to regain old skills. I had been a fairly good skier when we lived there. However, I was scared shitless now. I had visions of Jonathan getting hurt one year, Aaron breaking his leg in front of me the next year and of all of us getting spinal cord injuries, dancing through my head. He taught me a breathing exercise that involved flapping my arms a certain way on the inbreath at a certain point in a turn and in another way on the outbreath at a different place in the turn. He almost needed a crowbar to get me out of my default position which looked a lot like the fetal position on skis. When he set me free I had some confidence and even some skill. The second, and last day, all of my old and new skills came together. I understood how I could be a loose "statue" with "twisting hips" and breathe and turn. I skied through and past the fear to the point where I was an extension of the skis which were an extension of the snow, the mountain the world. It was beautiful, unforgettable, and transcendent. The joy, exhilaration, brief moments of sheer terror and peace were awesome. My falls were funny. My first fall a little girl came and plopped by me, checked to make sure I was OK then taught me how to get back up (I had forgotten and wasn't succeeding). Then the 7 or 8 year old made sure I got off OK. I had one fall where I summeraulted and wrenched my neck a bit right in front of a man my age. He asked if I was Ok and then said that that type of fall was called a "garage sale'-your stuff goes everywhere. I made some comments about my dignity. When his daughter asked what he was doing, he said, "Pushing down strangers". Then he offered. "since all of your dignity is gone" to help me up-it's much easier to be hauled up than get up on your own.

On our last day I skied a lot with Aaron who had an affinity for the same "easy" (that's relative to Bridger, not other mountains-the boys said that an easy on Bridger was like an intermediate or more in our arean) slopes I did. We had a blast. For about an hour we all skied together-even all on one lift seat at one point, which involved a lot of trash talk. Aaron kept me from getting lost or ending up at the top of a hill that was too hard. He patiently waited for me since I zig zag more than he does but I have prettier turns. Jonathan liked more suicidal hills and Rhett, I don't even want to think about the hills he went down but he's really good. Jonathan and Rhett seem to lack the terror gene. We all got along like old friends. It really was splendid. I felt and feel blessed by God for each of them and for being able to make the trip. We agreed we need to go again.

We packed up and said goodbye the next day to the mountain. I met a precious old friend at the airport who I have dearly missed. He's one of the kindest, godliest, humble, gifted, men and pastor I've ever known. We became close when we lived in Bozeman and he was a pastor at the Nazerine Church. He really helped my relationship with God and I hope to see him again soon.

The trip home was a delight of smelly airports, planes built for dwarfs, foraging for food, and to end our perfect trip, our luggage did not arrive when we did. Poor Jonathan had a suitcase full of dirty clothes (yes, there was a washer and dryer in the A-frame) and had to leave for JMU the next day. The saga had a happy ending as everything was delivered to us by early afternoon the next day and he got off for college fine. I managed to catch a bug right on the last day which progressed into flu, misery, and loss of voice. Still, I've been able to work this week and I *love my job*. Two weeks off was just what the doctor ordered. I'm on mostly vocal rest because of laryngitis but that just makes life interesting.

So, we all had a great time and I hope you are all doing well and finding peace in your lives. Love,

Kirsten
You must be the change you wish to see in the world.
Mahatma Ghandi
Beware of no man more than of yourself; we carry our worst enemies within us.
Charles Spurgeon

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Kirsten, RN, LPC
Radford, VA

Sandy - update after appointment w/oncology vet

Photo taken earlier this month on Long Island, NY.

We visited with the oncology vet yesterday (5/21/07), and xrays revealed Sandy has developed ulcers in his stomach. This was apparently caused by the Piroxicam, so it appears his body is not handling that well and we'll need to stop that treatment. He also has colitis - similar symptoms as a bladder infection, but only for the colon. If you've ever had a bladder infection you can probably imagine how uncomfortable a similar infection must be for the colon and digestive system.

In addition to stopping the daily dose of Piroxicam, the vet has put Sandy on five (yes, I really mean five) kinds of medicine: One to heal the ulcers, an antibiotic to resist infection, something to spur his appetite, and the purpose of the other two escapes me for the moment, but we have a long list of instructions downstairs. Our kitchen island looks like a pharmacy. Most pills are every 12 hours, but some are given 1/2 hour before he eats, some with a meal, and some 2 hours after. Tim and I developed a schedule to help us keep track because as you can imagine it gets a little confusing.

Even though it may not sound like it - the overall news was good. Colitis is treatable, so that's much better news than if the prostate had grown. But it's disappointing he cannot handle the Piroxicam, because this may mean relying more heavily on the intravenous option for a longer period. Tim and I will evaluate this with his doctors regularly, because even though we hope to extend his time as much as possible, we also want it to be quality time with as little discomfort as possible. One day at a time, eh?

Thanks for listening and all the best! Carla

Sandy's Cancer Treatments - He's a fighter!

Many thanks for all the questions and concerns from friends and family about Sandy and Samantha, particularly related to Sandy's fight with prostate cancer. In response to the many caring questions I'd like to provide this update.

Upon his diagnosis of prostate cancer (transitional cell carcinoma for those medically inclined), we immediately started the primary chemotherapeutic drug (a pill taken daily and which he'll take the remainder of his life - Piroxicam for those familiar with cancer treatment). And after additional discussion with both our regular vet and the specialists from two oncology vets, we decided to add the more powerful chemotherapy (mitoxantrone) which is administered intravenously every 3 weeks. Although this drug is more intrusive, has more side effects, and is also significantly more expensive, it's also been shown to increase the survival rate in dogs. Since Sandy is very much a member of our family (or our "pack" as we call it) - we want to give him every chance at fighting this; and given his otherwise excellent health, our regular and consulting vets concurred.

Sandy has completed 2 of the 3 or 4 expected treatments (4 is the maximum). Typically the chemotherapy process is much less "quality of life affecting" for dogs than people, because the dosage is much lower for both medical and affordability reasons. So the side-effects are also much less traumatic, at least in most cases. My understanding is pets don't lose their hair or experience some of the other more dramatic side effects, but they do sometimes experience nausea or diarrhea, loss of appetite and weight loss.

After the first treatment, we didn't see any obvious side effects, but since the 2nd treatment last Monday, Sandy has greatly reduced his food intake, he's been sick on his stomach a few times and seems to have some difficulties with normal bathroom functions (straining and such). I often wonder what our neighbors must think when they see Tim and I come out and actually watch Sandy when he goes to the bathroom, but what can I say, it's all part of the process in our teamwork of handling this together. :>)

We're a bit worried about the bathroom issues - since these could indicate growth of the prostate and/or tumor - and if that's happened this quickly then it's not a good sign. It's easy to let our minds "panic" into those "worst case" scenarios; so when that happens we just remind ourselves and each other to take it one day, and one thing, at a time. And whatever happens, we'll deal with it together; and we'll all pull together to share the load of whatever comes--good or not-so-good--the way partners and teammates do. And we thank you all much for the continued interest and well wishes on Sandy's behalf!

Sandy of course is taking all of this in stride in his usual "trooper" and stoic way. He never complains (no whining or testiness with this guy), and he always cooperates when it's time for his meds (sometimes 2 or 3 times a day now) - even though we can see on his face that he doesn't want to take that pill. In that inherent intelligence that dogs have, I'm guessing he might be attributing the pills to his current discomfort (and of course that is partly true). But his trusting little soul still does what we ask of him to take that next med or go with the doctor for that next treatment. Of course we don't baby him or coddle him because that doesn't help him or anyone else, but he does get lots of love and attention as always. I believe that all dogs are special, but he's always seemed sort of "extra special", and he's proving that every day with his dignity and grace at dealing with whatever life throws at him. He was also hit by a car a couple of years ago and he limped back to me with his leg all bloody and made his own way to the house and car without a single whimper. Fortunately he made a full recovery from that. What a champion.

And with all this extra focus on Sandy lately, of course we take special care to give Samantha attention too - because we don't want her to feel left out or pushed aside since he's a bit more needy at present. Given the way she "watches him" and how she howls to let us know when he's outside and wants inside if we're upstairs and don't realize it (he just sits quietly by the door) - I think she knows something is amiss. These guys have been through a lot together. They were owner surrendered when Sandy was 8 and she was 6 and they lived in the system (humane society) for more than 5 months, which is a LONG time out of a dog's short life. But that experience obviously brought them closer together and they are very in-tune with each other - almost like twins often are. We are so very lucky to have found them. We'll keep you posted as things progress.

Thanks for listening!
Best, Carla

Incredible volunteers and Mercy Hospital

Hi all,

Last Friday I had the pleasure of attending a volunteer luncheon at Mercy Hospital in Portland, and I'd like to share with you some heart-warming things about Mercy and our visits there.

Mercy is the first hospital where I accompany Sandy on his pet therapy visits with patients, their families, and staff alike (the families and staff needs a "pet hug" sometimes too). It's a great thing to see the joy and relief he brings to people at painful and stressful times in their lives, especially the smiles he brings when we visit the oncology clinic during patient chemo treatments. Sort of ironic actually, since he is now on chemo himself to treat him for prostate cancer (no cure for this in dogs, but we're hoping to maximize his time and quality of life). I had originally planned to add other facilities to our visit list, including a children's hospital in Boston since he's so very good with kids. But since Sandy's diagnosis, I've decided to wait on that until he finishes his chemo treatments in about 3-6 weeks and see where we stand then (more on his status in other blog message "Sandy's Cancer Treatments").

Mercy is a hospital in Portland that was founded in 1918 during a devastating flue epidemic. By the time the current facility on State Street opened in 1943, the Sisters of Mercy had assumed full responsibility for the hospital, hence the name. Today, although the hospital has the usual CEO and other managerial staff, it still operates under the care and direct involvement of the Sisters. I felt an immediate link with this hospital on my first day as a volunteer when I attended the orientation for staff and volunteers alike, when I learned their mission is to provide clinically excellent and also compassionate healthcare for all, with special concern for the poor and disadvantaged. Not exactly the "bottom line" mentality of many hospitals out there today. I especially like their core commitment to dignity of the individual - both as caregiver and recipient of care.

The core values of this wonderful hospital include community, justice, courage, and integrity. From what I've seen first hand, these values show in the faces and actions of every person that works there. It's a wonderful place. During that first day of orientation, I was impressed by the opening welcome by the Sister who oversees mission services. She commented that in any group, if there is even one dysfunctional person, then that is the person that controls the group. And she added that when that happens we find out what the manager of the group is made of - because of course in these types of situations we can either let that dysfunction spread throughout the group, or deal with that dysfunction head on and let everyone know it simply will not be tolerated - giving those with the dysfunction a choice of adhering to the values or moving on if they prefer. This can of course be done with gentle yet firm compassion and caring, but must be addressed in order to take care of the group as a whole. Perhaps not the words I expected to hear from a Sister, but ones that I greatly identified with and admired very much. As I said before, it's a wonderful hospital for many reasons, and I would recommend it to anyone in search of excellent yet compassionate care.

During the luncheon last Friday, I was amazed at the ballroom full of hundreds of people that volunteer their time and talents for Mercy. People from all walks of life - all age groups, all physical characteristics, all different backgrounds and skills, and in general, just a wonderfully diverse and varied group. But with at least one thing in common - a united belief in the values of Mercy Hospital. I was amazed when the awards were presented at the number of hours some people have given - starting with 100, 500 and going up to something like 50,000 or was it even 80,000? (I stopped counting when they got into the tens of thousands). Some volunteers new like me, and others going back since early 1900's. It was astounding and very heartwarming.

At Mercy, the volunteers are treated like staff in the same "family-oriented" way, and it's very easy to feel welcome there. I was especially impressed that during the award presentation, unlike most events where the recipient walks to the stage to receive the award - at this event the CEO (a woman) and other executive team members walked into the crowd and presented the awards to the volunteers - who waited at their tables where they were photographed receiving the award from the management team. And since the number of awards given out were quite a few and people were all over the room - the management staff certainly got their exercise that day! But they did it with a smile the whole time. It was great.

Warm regards always,
Carla