Mapping the Emotional Landscape
Knowing yourself and your dog
Focusing your Energy
During the early phases of treatment, you need to focus your mental and emotional energy where it can make a difference to your dog. Try to let go of any guilty feelings about your dog’s diagnosis. If you are worried that you should have spotted the symptoms sooner, look forward instead of back and channel your energy into learning about what’s ahead. Remember: Stages I and II can’t be spotted with the naked eye. Also remember that most dogs hide illness.
Riding the Emotional Roller Coaster
Expect an emotional roller coaster. Beginning treatment is very stressful. Mere days before, you thought your dog was in good health. Suddenly, your dog has a life threatening illness. We chose the phrase "roller coaster" for Berry’s web site because that was how it felt to us. We later discovered several other owners use exactly the same phrase in their web sites: the emotional reality of how people who love their dogs experience the early phases of diagnosis and treatment. The roller coaster begins with hearing the diagnosis. Then, you ride back up on your optimism as you learn that treatment is possible, remission likely, and side effects less threatening than with human chemotherapy. The treatments begin to work and you soar higher. Then come side effects and you are hurled toward the ground, your stomach in your throat again.
The process becomes progressively easier as time goes on. You gather information and make decisions. You get to know the medical professionals who are helping you and your dog. The regimen of medicines and side effects, if any, becomes more predictable and manageable. You know what to watch for and the kinds of questions to ask. You find a balance between urgency (necessary to save your dog) and patience (necessary to give the treatment protocol time to work). If you are lucky, your dog goes into remission, and the treatment schedule is spread out, meaning fewer drugs and appointments and more time for your dog to be a dog. You’ll deal with a recurrence if and when there is one and, until then, you enjoy every day with your dog in a new way.
Managing Your Fears
Fear of losing your dog is what motivates you to seek treatment for your dog’s disease. Fear is good because it supports your learning about lymphoma, and your advocacy and self-assertion to get the best possible care for your dog. But fear also can interfere with your dog’s quality of life if you aren’t careful. Suddenly, you debate every routine behavior and activity. Can he eat this? Is he too tired to play ball? Should we go to the park where he might encounter other dogs? Should I let him swim in this stream where there are bacteria? Chemotherapy can impair your dog’s immune system and leave him more susceptible to some types of infections. But unless your oncologist has specifically advised you to quarantine your dog, you may need to control your desire to shield your dog from the bumps and bruises of everyday life. He’s a dog, and some of these things that you worry about are important to his quality of life.
Mundane dog health issues will continue to occur. Four months into treatment, Berry contracted campylobactor, a "bug" that causes diarrhea and vomiting, from his pal Cody, and gave it to his "mom", Amanda Jones, before Berry himself had any symptoms. Nine months into treatment, a hot spot emerged on Berry’s neck during a week at the beach. Over the fall and winter of 2000-01, Berry developed persistent skin problems including rashes and dramatically thinning coat -- ultimately diagnosed as scabies and a related bacterial infection that took up residence due to his suppressed immune system and were hard to shake. Berry occasionally threw up for no reason -- or at least for no reason related to his cancer or chemotherapy. At first, we approached each incident with alarm, but as time went on, we didn’t immediately attribute every "off" day to the disease or the drugs. Your dog’s immune system may be compromised, and there may be times during chemotherapy when your oncologist recommends restricted activity. But in our experience, normal precautions were sufficient – while Berry was healthy, he was not a "bubble dog" confined to the house and separated from the rest of his species. He had a blast, as reported in Appendix V. Only in the last few months of his life were general health problems hard to shake.
On a more superficial level, most dogs' appearance will change during chemotherapy. Most will have their sides shaved as part of the "staging" process, and they may need to be shaved later for "restaging" or other evaluation. Although officially categorized as an "infrequent" side effect of most of the chemotherapy drugs, at least some dogs do experience coat changes. A few breeds, including poodles, will lose their hair similar to humans in chemotherapy (see http://www.cvm.tamu.edu/oncology/faq/FAQ.html for discussion of coat changes.) Some dogs lose areas of their coat, or the character of their hair changes as a result of chemotherapy. Berry’s shaved areas were very slow to grow in because of the chemotherapy. Then, in the fall of 2000, his long hair did not re-grow when it was shed, and his overall coat thinned dramatically and his feather virtually disappeared. This condition was eventually determined to be a combination of opportunistic infections that weren't caused by the chemotherapy but may have taken root because of Berry's somewhat compromised immune system. Once treated with Ivermectin, his luxuriant coat regrew to its original glory.
Taking Time to "Sniff the Dog Pee"
The time (and energy) you will devote to your dog’s treatment is undeniably a major chunk of discretionary time. Because your dog is so important to you, you fit chemotherapy in along with the other essentials – your family, your job, and basic household maintenance (buying the dog food). Our advice on this point is to let the mundane household chores wait – or even better, if you can, find someone else to do them. Go to the park and throw a stick, and marvel that your dog is still with you. Treat every day like the special one it is. My only regret is that I did not take Berry to our dog park every single day.
Rejoicing that Dog Life Goes On
Your dog in chemotherapy will still beg for food, tear up newspapers, want to sleep on the furniture and love to go out. The temptation to indulge -- yes, to spoil -- your dog will be even greater than before. Appendix V describes some of the fun Berry had -- at the dog park, the beach, his favorite swimming holes, and in the Vermont woods – during the three years he was in treatment. We’ve included it to illustrate how vital and active a dog in chemotherapy can be. But the other point we want to emphasize is how ordinary Berry’s life was during nearly every day of his chemotherapy -- over one thousand good, ordinary days. Days when Berry had his morning walk, ate breakfast (which may have included a pill or two), and then snoozed the day away with in his Office of Homeland Security or in the front vestibule (aka the "barkatorium"), knowing we would fulfil his every need. "Feed Me, Pet Me, Walk Me, Brush Me," we would sing to the tune of the Who’s Tommy. This was the gift of chemotherapy to Berry and us.
Using the Treatment Experience to Deepen Your Bond with Your Dog
Watching your dog in treatment is a series of life lessons. Berry always put out his very best – he went to VHUP with enthusiasm, leaping from the car the moment the rear hatch was opened and running to the door to the waiting room. He couldn’t wait to get upstairs to Oncology. Later, he emerged from the treatment area happy to see us, but clearly conflicted about passing up another stuffed toy upstairs to go home with us. On the rare day (usually after receiving vincristine) when he didn’t feel quite up to par, he relaxed on his dog bed at home. How we all need to live. Berry’s courage during chemotherapy was inspiring. He was tough and resilient, ever enthusiastic, and never ever expressed displeasure – never so much as a growl for all the exams, tests, and needles.
Thinking Outside the Box
Keeping an open and inquiring mind during your dog’s treatment is critical. You have to be ready to "think outside the box". Here is what we mean:
We all interpret what is happening around us based on our accumulated knowledge and experience. Faced with a new situation, we may misunderstand it. This is because we approach a new situation by searching our "experience database" to identify our most similar prior experience – the "box" or "paradigm". We then deal with the new situation based on its similarities to our prior experience – what is familiar about it – rather than by critically examining how it is different than our prior experience. Simply put, it is easier and more comfortable to rely on the familiar to interpret a new situation than it is to confront and examine the unknown.
This tendency to rely on similarities in prior experience can be dangerous when it involves your dog in chemotherapy treatment. This is because you have a strong desire to understand what is happening to your dog and a need to seek comfort. The similarities to your prior experience (what you know) are reassuring to you, something you understand. This is dangerous. These powerful forces – your need to understand and your tendency to seek comfort in the familiar -- can keep you from seeing how a new situation is different from what you already know. In fact, the differences may be more important – more meaningful from a medical perspective -- than the similarities.
When we are under stress, we are not likely to be reflective enough to sort out these similarities and differences, or to ask ourselves if the differences are more important than the similarities. And although their education trains them to think more critically, veterinarians, even the oncologists, are not immune to this tendency. As a result, sometimes you (or the doctors) can get stuck in this "similar to prior experience" paradigm (thinking "inside the box"), when the key to helping your dog is getting outside the box – into the unknown or implausible -- or pushing the doctors to get there.
This concept is difficult to explain in the abstract, so here are two specific examples. We’ve discussed these examples previously, in a different context, but they may help to illustrate this very important point:
1. The "chicken bone" paradigm. When Berry had the severe vincristine side effect early in his treatment (discussed in Chapters 1 and 7), the doctors Berry encountered in the VHUP Emergency Service had general knowledge of oncology and chemotherapy. But their most similar direct experience was with dogs whose vomiting and elimination problems were caused by intestinal obstructions – ingesting of foreign objects is a common reason dogs appear in the Emergency Service. Berry had never had problems with swallowing foreign objects, and his recent chemotherapy discharges said to watch for vomiting and other GI symptoms. So a drug reaction was the most likely reason for Berry’s problems given that he had recently begun chemotherapy. But the Emergency Service instead performed x-rays to search for an obstruction. They may have done this because an obstruction was what they were most conditioned to look for by their experience in the Emergency Service. We thought Berry might be having a drug reaction but we were too new to chemotherapy to challenge them – was it the drugs, the disease itself, or a chicken bone off the sidewalk? Once the senior oncologist reviewed the situation, she came down on the side of a vincristine reaction, and subsequent events confirmed this.
2. The "perfectly logical explanation". During Berry’s third course of treatment between June and September 2003, he just didn’t seem right to us. He was increasingly more lethargic, losing muscle tone, had persistent diarrhea, and healed slowly from his surgery in August. Because each of these things could have been a side effect of Berry’s new Lomustine and prednisone treatment, we and the doctors didn’t actively consider other major causes until September. He had experienced some lethargy and loss of muscle tone with his 2000 chemotherapy protocol (similar experience), so we believed the chemotherapy was the cause even though these problems seemed more debilitating than before. Even though we knew Berry had one spindle cell tumor, none of us really focused on the possibility of other, non-lymphoma cancers playing a major role in his declining health. We kept asking how long the "side effects" should persist. In the back of our minds, we were worried something was wrong. Finally, the routine chemotherapy tests began to document dramatic changes in his platelet levels and the doctors began to search for other causes. But for a long time, we were stuck in the box of prior experience and we couldn’t grasp that Berry’s persistent symptoms were something other than a chemotherapy side effect. In the end, it was multiple, end of life issues, probably including other cancers.
Trusting Your Instincts
This is one of the fundamental points of this handbook: how important it is to follow your instincts about your dog. By "your instincts", we mean the intuitive sense -- that blend of feeling, knowledge, and understanding -- of your dog that arises out of the human-canine bond and that only you have about your dog. You already know this intuitive knowledge exists – we just want to talk about how it applies to your dog in chemotherapy. Always use it, together with the factual information about your dog's condition, and your hope and determination to do what's best for your dog.
Even though Berry had been with us only 3 months, I sensed something was wrong when he was first diagnosed in February 2000. The signs were small and ambiguous because he was still new to us, but they were there for us to read. During his three-plus years of treatment, we gave every pill, and kept every appointment, because we knew Berry's life depended on it. But we also intuitively knew when he was doing well -- he was active, strong, and joyous. When a small lump appeared on Berry's elbow in May 2003, I took him first to the neighborhood vet, and then to VHUP. Berry had still been in remission at his Oncology visit in April and his next follow-up was not scheduled until July. But the lump was worrisome -- as were other small behavior changes behavior like his letting Otto take the lead on our morning walk, and lying down on the floor when we volunteered at the local nursing home instead of standing to be petted. My suspicions were confirmed: Berry's lymphoma was out of remission, and the lump was a pre-cancerous spindle cell tumor. And even bigger issues were lurking behind -- ultimately, four months later, we realized Berry was nearing the end of his life.
Sensing When the Current Shifts Against You
When Berry was diagnosed out of remission in June 2003, it felt different to me from the when he began treatment in February 2000, or when he had come out of remission in December 2001. In 2000, once Berry was diagnosed and survived the first three weeks of treatment, his symptoms decreased as the treatments proceeded. The progress was slow but steady – smaller lymph nodes and spleen, better blood work, continuing weight gain, vibrant health. And when Berry began to come out of remission at the end of 2001, he adapted to the new course of drug therapy without missing a beat.
But when we started new chemotherapy in June 2003, I knew that summer might be his last. Over the summer, Berry’s health problems increased instead of receding. The lump on his elbow that had motivated me to bring him in early to VHUP was diagnosed as a spindle cell tumor. Intermittent diarrhea was diagnosed as likely caused by campylobacter. Berry had had "campy" in 2000, and it was quickly resolved with Baytril. But in 2003, the "campy" took longer to control, and the diarrhea persisted – and then became chronic -- even after the campy infection was cured. And Berry seemed lethargic and continued to lose muscle tone.
There was a perfectly logical explanation for each of these things. Baytril, prescribed to cure campy, is an antibiotic that also can wipe out beneficial bacteria in the intestinal tract, itself causing diarrhea. The lethargy and loss of muscle tone could have been results of the increased doses of prednisone that were part of the new drug protocol. And he was somewhat anemic, but that was believed to be a side effect of the new Lomustine therapy. But Berry couldn’t seem to get traction on any of these problems. He seemed ever smaller, quieter and less active. Over the summer, it was difficult to determine how much of Berry's behavior might be a chemotherapy side effect, and how much was disease progression.
In our continuing optimism, and without fully understanding how invasive the surgery would be, we scheduled surgery to remove the spindle cell tumor. After the surgery in late August, Berry entered a steep decline. In early September, Berry spent another overnight in the Emergency Service because of swelling in his face and limbs, and unscheduled blood work there the next day revealed that his platelets – the cells that promote clotting -- were dangerously low for general health and far below the baseline required for chemotherapy. A week later, his platelets had rebounded, but not enough for the Lomustine therapy. For the first time in three and a half years, a scheduled chemotherapy treatment was postponed. Berry never again reached a level of blood values that allowed for further Lomustine treatment. By mid-September, when we consulted our intuitive resources, we knew in our hearts that Berry was in his final weeks of life. Even though VHUP's clinical information was positive (his lymphoma was once again in remission), we could feel Berry withdrawing from his home life. We had frantically searched for the cause, but began to turn to end of life issues. VHUP continued to hold some hope that these trends could be reversed and tried to keep his lymphoma from recurring with a shot of Elspar. But we knew that Berry was in the process of dying. Within two weeks, VHUP tests confirmed he was rapidly losing ground; while the cause was undetermined, it was not his lymphoma. While his platelets were perilously low, VHUP determined through a bone marrow aspirate that production of precursor cells in the bone marrow had not been impaired; rather, the platelets were being lost through some sort of auto-immune reaction or attack elsewhere in the body. In his final weeks, as Berry grew thinner and his coat less luxuriant, I identified two other irregular growths under the skin on his shoulder and hip that were probably other tumors: an odd raised patch on his skin, and an ominous black growth between his toes on his left front paw, probably another, different cancer in a place none of us had been looking.
VHUP's information was helpful, but not essential: once we let ourselves confront our intuitive knowledge, our path was clear: it was time to prepare to say good-bye. Each fall, Father Slobogin, the priest at the Catholic Church in our neighborhood, held a Blessing of the Pets for neighborhood families in honor of St. Francis of Assisi. After the service, people and their pets filled the main aisle of the church, moving slowly forward as the priest individually blessed each dog, cat, hamster, or bird. We had taken Berry in 2000, and as we neared the front of the line, Berry dashed ahead and began to drink the holy water right out of the chalice. Good-hearted Father Slobogin laughed, and when we told him Berry needed it inside, too, because he had cancer, the Father gave him another, special blessing. I believed this blessing had extra power, and in 2001 and 2002, we were sure to be in attendance for a blessing to ward off Berry’s disease. But in 2003, two weeks before Berry’s death, we went knowing that the blessing, administered as Berry lay down in the aisle, was not to sustain Berry in this life, but rather to prepare for his safe passage to life as a spirit dog.
Preparing for the End, Knowing You’ve Done Your Best
I realized in writing this chapter that for Berry and us, there was symmetry to the chemotherapy treatment journey. There was a month of struggle in the beginning and another at the end. In the beginning, there was the slap of the diagnosis, and we tumbled into the first month of treatment and the chaos of the vincristine side effects. Once those issues were wrestled down, our dog entered a long period of stability, great health, and routine treatment. There were minor spikes when other health problems emerged and when he came out of remission late in 2001, but the middle three years of his treatment were amazingly, wonderfully ordinary. That, indeed, was their glory – how normal they were. Then, in the last two months of Berry’s life, his slow deterioration suddenly became apparent, and there was a month of frantic searching as we and VHUP struggled to identify the causes and possible counterattacks. Finally, we all confronted reality, that Berry was dying and we had to let him go. Once we knew Berry was rapidly losing ground, and might soon be suffering, we began to prepare for the end of our dog’s life.
We struggled, but in the end got peace from finding the right solution. As we made our final preparations, we did so with tremendous sadness, but also with the peace of mind how much we had done for Berry. Berry had been transformed from a sick, homeless young dog into a middle-aged dog secure in our hearts and home. This was the result that we had been seeking in 2000 – more time, more good days. For you, it may be one more agility competition, one more good summer, or some other modest milestone like time shared with your great friend. For Berry, we simply wanted more time, and every day that he lived with lymphoma was a good day.
How Your Dog Lives On
A dog who has lived through chemotherapy is not easily relinquished to death. For us, this part of the journey – beyond Berry’s death -- is still unfolding. Creating this handbook enabled me to be with Berry a little longer -- to look back over the course of his treatment and consider what I did and did not understand at the time and what information might be useful to a new chemotherapy client, to save them time or from confusion. And working with Jo-Anne Sherburne, the artist whose sketches capture Berry’s courageous personality, brought me a new friendship through Berry.
After our dog died, we debated creating a veterinary scholarship or making a donation to VHUP. But then we realized that Berry’s meaning was more personal than institutional. So we created the "Berry Fund" for someone special in Berry's life. Whenever something good happens, we add to the Berry Fund, which will be available to its beneficiary in a few years. More purely for ourselves, last spring, we paused while creating this handbook to buy land adjacent to BerryBrook – more of the Vermont woods and stream that Berry loved, where his friend Otto and Golden successor Rosie now run and jump and hunt and play.
When her black Lab Cody died, Nicole Kraft, another VHUP client and one of the founders of Pets with Cancer Lifeline, created Cody's Club, a charitable fund and support group to assist owners and their pets faced with malignant mast cell tumor and radiation treatment. The fund makes gifts to assist with the cost of treatment performed at Ohio State University or any other 501(c)(3) (non-profit) treating institution.
During the last year of Berry’s life, a group of VHUP Oncology clients created Pets with Cancer Lifeline, http://www.dogdoggiedog.com/PetswithCancer.htm, a support system for new VHUP clients. Through email and phone calls, we answer questions about our pets’ experience with chemotherapy and other cancer treatment. For those of us whose pets have died, helping someone else faced with a lymphoma diagnosis reminds us of both the high and low points of our pets' treatment, and keeps their valiant spirits present in our lives.
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