Alec's Story: June 2010

Pictures can be more fun than words, so let's start (and end) with them! Some scenes from Alec's adventures during the last few weeks:

Happy hour outside the Victory Bar on SE Division St, 8 blocks from our house. There was a pug a few tables away and Alec only barked a few times! It helped that I brought lots of cookies with which to distract/bribe him...

Taqueria Los Gorditos, my favorite neighborhood taco truck. Since I am not up to cooking these days (at least not for myself) it has been burritos almost every day.

Sharing a tofu burrito...

...outside the Portland opera house on the east bank of the Willamette River.

Strolling along the east bank esplanade with the Hawthorne Bridge - one of downtown Portland's eight bridges - in the background.

Playing in the Columbia River at Sauvie Island last weekend; our heads are conveniently blocking the naked people behind us on the beach! The "clothing optional" beach is the only one that is accessible for Ali; the regular beach has stairs.

Sociable Alec hanging with the neighbors outside our row of connected apartments, which are converted army barracks originally built in the 1940's.

The upside of staying home all the time is I have gotten to know my awesome neighbors a lot better! And the sheriff likes to be part of a pack (more people to protect).

On the stoop with Uncle Mike.

Since Alec's spinal injury two years ago, I have taken him swimming on a regular basis for fun and exercise. We had to take some time off after his recent surgeries, but two weeks ago he was back in the pool...

...and loving every minute of it!

This winter we began swimming once a week at Paws Aquatics Canine Swim Center, a wonderful indoor pool facility south of Portland. The proprietor, Diane, has been very supportive of me and Alec. We love her! If you live in Portland, you should take your dog here.

Alec is a very strong, smooth swimmer. He never seems to get tired of chasing the ball or swimming gentle laps with me. When we are done, I shampoo him in the bathroom off the pool.

Thank you to everyone who has phoned, emailed, or left comments asking for updates about Alec. I meant to post sooner, but these last few weeks I have been in full research mode, consulting every source I can get my hands to educate myself as much as possible about Alec’s cancer (hemangiosarcoma) and available potential treatments (to prolong his quality of life; the cancer is incurable). The first days after learning of his diagnosis, especially after three (!) benign biopsy results, I could not help being devastated. I could barely talk to anyone, and I found myself sinking into despair. As a tidal wave of unreality washed over me, my primary emotion was the shaky feeling that I might simply "lose it." But then I realized I could not do that, not yet. Alec was still here with me, and he needed me to focus. So for his sake, I gathered all of my energy and resolve and began to deal with the situation as best I could.

This meant, first, maintaining a positive and happy attitude around Alec (no blubbering or hysterics! The last thing he needs is to worry about me, right?), which for the most part I have done successfully, with one notable exception this week (more on that later), and second, assembling a team of veterinary experts while also (and just as importantly, I think), educating myself so I would be in a position to make the best decisions for Alec moving forward. Sounds sensible, doesn't it? Well, let me tell you, this latter has proved to be no simple feat! Unless you have been through this, you might be surprised at the amount of confusing and contradictory information that exists about cancer treatments – even the veterinarians don’t agree with each other. This has left me in a position where I have had to make a lot of big decisions by myself, a daunting proposition considering I was basically starting from scratch in terms of my knowledge base. Of course, I knew that I would be the “leader” of Alec’s veterinary team and that all decisions ultimately fall to me. But I didn’t realize there was such a lack of consensus (to put it mildly!) about optimal treatments for canine cancer not only between holistic and conventional realms, but also within these two distinct spheres. Trying to distill and make sense of all of this information - while also attempting to critically evaluate each source - has set my head spinning repeatedly during the last few weeks.

Let me give just a couple examples. The controversy over antioxidants and chemotherapy is probably the most well-known. It is the same in human medicine, by the way (unsurprisingly, as canine cancer treatments “trickle down” from methods used to treat people). Alec’s oncologist told me to not give him antioxidants while he was undergoing chemotherapy because they interfere with the cancer-killing properties of the chemo medication. However, many holistic vets say that antioxidants not only don’t interfere with chemotherapy, but may increase its effectiveness or at least help mitigate potential side effects. I consulted as many sources as I could find and there is absolutely no consensus on what would seem like a straightforward issue: antioxidants during chemo – good or bad? From what I can tell, the latest evidence seems to indicate that antioxidants are not harmful during chemo…but what do I know??

I was willing to keep him off antioxidants at the oncologist's recommendation, but when I asked her which of the ten supplements the holistic vet had prescribed for Ali counted (many are blends of several different ingredients), she never gave me a straight answer. After inviting me to email her with questions she simply stopped answering the ones about supplements. I think it might be that she is just not that familiar with them. Most have not been through the holy grail of western medicine, controlled double blind studies, due to cost and lack of funding from big pharmaceutical companies (at least this is my understanding). And veterinarians (and doctors) trained in conventional medicine tend to be skeptical or downright dismissive of anything that has not been subjected to a controlled double blind study. Don't get me wrong. Although I am open to it, I would not characterize myself as a devotee of naturopathic medicine. I had done some reading on the subject and recently developed an interest in "alternative" treatments, but the whole field is very new to me; in fact this is the first time I had ever consulted a holistic vet (except for acupuncture when Ali was paralyzed). As I mentioned, my intent was to eschew neither methodology, but rather to combine the best insights from both. Easier said than done! Anyway, regarding my antioxidant confusion, after consulting the holistic vet who had prescribed them and conveying my concerns - he said none of the antioxidant levels were high enough to interfere with chemo - I decided to keep Alec on most of them.

Another example is when I showed the oncologist the supplements the holistic vet had prescribed for Ali. She scoffed at an ingredient in one of them, saying, “This bypasses the stomach and does not even get absorbed!” I called the holistic vet and told him what she had said. His response? “That’s absurd! It’s just not true.” The oncologist made a few other disparaging remarks about some of the supplements. When I relayed these to the holistic vet, he did not agree (nor would I have expected him to, since he had prescribed them). So it falls to me to figure out who is correct. Yikes.

My hope had been that Alec's oncologist and holistic veterinarian would work together in complementary harmony. According to my reading, this can and does happen! But it was not happening with these two, so I pressed onward to Plan B. The oncologist had mentioned another holistic vet with whom she had worked and of whom she spoke highly, whereas my first holistic vet and she did not know each other. So I made an appointment with holistic vet #2 for a second opinion, hoping she would be the tie-breaker, so to speak, and forge a nice bridge with the oncologist. The oncologist said she looked forward to hearing holistic vet #2’s recommendations regarding supplements. I was excited as visions of an integrated team effort once again danced in my head, and I couldn’t wait for my appointment. I showed up with all of the supplements that holistic vet #1 had prescribed for Alec. I also brought a list of other supplements that are supposed to be effective at killing cancer cells or preventing metastasis, which I had compiled during my reading, to get her opinion on those.

Although I liked holistic vet #2 personally, I was disappointed to find she had not heard of many of the supplements holistic vet # 1 had prescribed – yet she thought Alec was taking too much and that I should remove some of them. Nor was she familiar with many of the supplements on the list I had brought. When I asked the antioxidant question – which, if any, of the supplements might pose a risk – she deferred to the oncologist! I said, “She told me to ask you!” Jeez. Frustration…to the tune of another $150 exam/consultation fee (not that this amounts to a drop in the bucket of what I have spent – also not that I am complaining). And I left that appointment with more questions than I had going in.

The fact that she was not familiar with many of the supplements Alec was taking did not inspire me to follow her recommendation to take him off some of them. If she had a good reason, I would have definitely considered it. But “I think he is taking too much” alone did not strike me as a valid reason. When dealing with an aggressive, malignant, incurable cancer, I think you want to throw everything at it you can – as long as the supplements are not doing harm or interfering with each other or the chemo, of course. And it goes without saying your dog has to be willing to take them, with food or whatever, and because quality of life is the most important factor always, there should be minimal to no stress associated with giving them…but that is a whole different subject (and another big challenge if your dog is like Ali and lacks the indiscriminate appetite of a hoover vacuum; getting supplements in those voracious dogs is easy!).

Along these lines, holistic vet #2 also suggested only adding one herb/supplement every two weeks so we could monitor each for potential side effects. When I asked how we would know if any side effects were due to the herb or the chemo, she said there was no way to know for sure. So why stagger? And every two weeks there is a recheck exam to the tune of $45- $65 (this is not a lot of money compared to what I am spending, but I was also not happy with the exam...however, I will resist the urge to go off on that particular tangent). I don’t think this was some money-making scheme; I am sure she believes in the slow, staggered method of introducing herbs and supplements, but all things considered (including Alec’s particular form of cancer and everything I gleaned from my reading), I preferred holistic vet #1’s more aggressive approach, plus he just seemed more knowledgeable.

My next step was to call holistic vet #1 and ask him about that list of other supplements I had compiled from my research. I didn’t want him to think I was questioning his methods; I was just curious for his feedback (and these supplements should always be given under the supervision of a veterinarian so I would need to work with him, or someone else). He was familiar with some on my list but thought they were not as effective as those he had prescribed, and others he was not as familiar with. He was open to adding these to Alec’s regimen, however, if I wanted to. I liked his non-rigid attitude and willingness to add things that I might have read about on my own, whereas holistic vet #2 just thought Alec was taking too much without giving me any basis in fact. By the way, in case you are wondering if the supplements are expensive…they are. The total cost of what Alec was prescribed by holistic vet #1 is about $1,300 for one month (cue jaw drop – I cannot think about that, just hoping my credit cards will not max out; the chemo costs even more than this per month). I know they are not gouging because they charge exactly what the manufacturer does for the supplements and do not mark them up. Nevertheless, definitely not small change.

Another area of confusion is diet and nutrition, but I am not even going to touch that one. Of the three vets I asked about diet, all three had different recommendations! You may know that most experts recommend a diet higher in protein and fat and lower in carbohydrates for dogs living with cancer (people too, I think). Well, there is tremendous variation within that – commercial or homemade, raw or cooked, different ingredients and mathematical equations – and there is no consensus on what is best (have you noticed a theme yet??). I have tried to make the best decisions I could after weighing all the conflicting opinions and contrasting them with everything I have read, but it is a lot of pressure and fraught with uncertainty. I know much of this disease is out of my control. However, I don't want to make a mistake with those precious few things that are within my control (i.e. nutrition, immune support, medication, etc.). I also know whatever I do may not matter. But I have to try.

Disclaimer: It is definitely NOT my intent to impugn the character or professionalism of any of these veterinarians! I know they are advising me to the best of their ability. My aim is merely to show it can be a challenge to make sense of conflicting recommendations, that's all.

So this last month I have been muddling through what feels like a crash course in caring for the canine cancer patient. The reason it’s a “crash course” is because with a highly metastatic cancer time is of the essence, and I wasn’t prepared. Is anyone ever prepared for this? If anyone would be it should have been me, but I had only been reading books on general canine health and wellness. I thought Alec was perfectly healthy and that I was doing my best to maintain and improve his condition and well being. I had him examined regularly. I fed him healthful foods. I continued to follow a physical therapy regimen. Because of everything he has been through, I was vigilant. I was observant. I was slightly obsessed. But I had not gotten to the point of reading books about different types of cancer in my spare time. I wish I had. I might have seen this coming. After all, hemangiosarcoma is common in German shepherds. Yet I had never heard of it. I always called Alec’s vet at the first sign of anything unusual, but this cancer, like many others, shows no symptoms until it is already fairly advanced. Alec looked and acted healthy, energetic, and vigorous. There were no signs…until that first bleed. Well, there was one sign in retrospect. He had lost about 3 pounds over the last couple months. But I had also switched him to a new diet during that time, to which I was adding fresh foods, and I thought I just had not gotten the proportions perfect yet. Although I tend to blame myself for everything, even I can understand why Alec losing a little weight did not raise alarm bells in the absence of any other clinical symptoms. And he just seemed so healthy, vibrant, and happy…shining eyes, radiant smile, and gleaming coat. Cancer sucks.

And there was that period of lost time, the month and a half following the (first of three!) false benign biopsy results. I don’t think I mentioned that the pathologist, when repeating the last biopsy at the oncologist’s behest, ended up testing 45 additional sections before he finally found cells consistent with hemangiosarcoma – and these were only found in two of the 45 sections. This made me feel slightly “better” about it being missed the first three times, but I had NO idea biopsies could be so unreliable. Take heed. You don’t want to end up like me, fiddling while Rome burns…or drinking champagne while cancer fucking metastasizes inside your beloved. Sorry for the bitter bomb. I try, but sometimes my positive veneer slips.

This has all been about me, but what about Alec? This is his fifth week of chemotherapy, and he seemed to be doing well...eating (even gaining weight), cheerful, active, and basically acting like his regular self. I started taking him swimming again after he had completely recovered from the last surgery, and he did not miss a beat! I was cautious during our first time back in the pool to make sure he did not tire too quickly, but he was raring to go (in fact, wanted to stay in the water longer!) and seemed just fine afterward. In the past couple weeks, we have been to the indoor pool twice, the underwater treadmill once, and this past weekend I took him for a swim in the Columbia River at Sauvie Island. Every day I try to bring him somewhere new in the car – a park or even just a new neighborhood to stroll around – to keep his spirits and sense of adventure up.

I have been spending more time with Alec than ever, if that is possible. He was not alone much before, but I would sometimes go out with friends, leaving him for a few hours. Or I would go the store and leave him at home. I stopped doing that. Now, I really only leave him for 35 minutes each day – the amount of time it takes me to jog my little neighborhood loop - and I have been taking him with me to run short errands because he likes to go for rides. Since it is basically still winter here in Oregon, it has not been too hot to leave him in the car, which is an upside to the unseasonably cool weather. Although I stopped going out socially unless I can bring Alec, we have been spending time with neighbors and friends on my stoop. When we sit outside, Alec is still the feisty “sheriff” (his very appropriate nickname) and continues to do his job with relish and aplomb, which means protecting me from all the neighborhood menaces, i.e. barking at passersby, especially those of the canine persuasion!

That is the update as of last weekend. But early last week he started acting “off.” I mentioned earlier the one notable exception to my attitude of deliberate cheerful positivity in Alec’s presence. It was a few nights ago. For the third evening in a row he began following me from room to room…acting funny. Last time he did this he was bleeding internally. He showed no other signs then, but I brought him to the hospital and they found the bleeding mass on his liver and performed the second emergency surgery. Mind you, there can be no more operations at this point; there is nothing more that can be accomplished through surgery. This “following” behavior, this acting strange, is the only thing I had noticed the last couple days, and each instance was for a relatively brief time, so briefly I thought (hoped) maybe I was imagining it. But then a few nights ago, he also didn’t want his dinner. I am worried. I am scared. He has been doing so well, but now I am terrified again. So I cried. I cried in front of him while he lay on the kitchen floor (where he never lays) looking up at me. We came into the bedroom and he fell asleep on the bed while I cried some more. Then I pulled this out, because I had been meaning to update. Because I am afraid I will lose my voice.

When dealing with a loved one's terminal illness it is amazing how your perspective shifts and shrinks to praying just for more time…a few months…please, a year. Before this happened, I prayed too, or whatever you want to call wishing and hoping. I would pray for Alec to live until he was 19 years old. I asked for that almost every day. Where did I get 19? Well, it is the longest I had ever heard of a German shepherd living. A few months after I moved to Portland I was walking Alec in his wheelie cart and some passersby mentioned their German shepherd lived to that age. I fixated on it, thinking it was wonderful that Alec could also perhaps live that long, even though it was far past the average life span. Why not, I thought? He has been through so much and I will be vigilant. I will do my best. I won’t miss anything. I will take care of him. I will keep him safe.

This is long and all over the place, but I will write more. I have a lot to say, and the truth is…I am afraid I will lose my voice if he leaves me. Anything I want to say, I figure I better say it now, while I still can. I’m not sure what will happen to me, where I will go, if he is gone. That’s the truth. It is raw and it is ugly and after my pledge to remain positive, I can only type it quietly, late at night while he is sleeping…still by my side, still here with me.

Please keep Alec in your thoughts. I started writing this a few days ago and his appetite is still off. I haven’t been able to give him most of his supplements because he is not interested in the foods I was hiding them in (they are too many to give by mouth; I have to open the capsules and sprinkle the powder in food he likes). I hope this is a reaction to the chemo and not a new bleed. I am worried but I am going to keep hoping for the best. It is all I can do. Thank you to everyone who has been thinking positive thoughts for Alec. It truly does mean a lot.

P.S. Update: Alec went in for chemotherapy yesterday and when they checked his blood work his white blood cell count was really elevated (too high or too low is not good). This is the exact opposite of what would be an expected side effect from the chemo drugs, which can cause bone marrow suppression resulting in a lowered white blood cell count. So this does not appear to be a reaction to chemo. The oncologist said this could be an infection, although she did not see signs of infection. However, she put him on an antibiotic to cover that base. The second thing it could be is a reaction to one of the herbs he is taking (boosting his immune system too much?), so she told me to stop those for a week. We will check his blood levels again next Friday. She said if he gets worse or stops eating, I will have to bring him in. I am so worried and really hope he feels better soon. He seems the same today - eating, but not as much as before, and slightly lethargic. Maybe I was wrong, after all, to follow holistic vet #1's advice and put him on so many things at once. Ugh! How can I know what the right decisions are? I am not an expert! And the supplements were all prescribed by a vet - it's not like I went out to the store or hopped on the internet and created a treatment plan myself (all the books caution against this!). Although I hope I did not do something wrong, at the same time I hope it is one of the supplements, because she did not have other theories about what could be causing this strange abnormality.

The barracks, the sheriff, and me...and the Portland sun making a rare appearance.

Love, love, love.

Alec sleeping on my shoe.

How cute is he? One of my favorite things in the world is to watch Alec sleeping soundly with his little eyes scrunched shut like that. Have I mentioned lately how much I love this dog?