pain management

I have been meaning to write an update for days now, but I think on some level I was waiting to see how things were going before I dared.

carver went to see a pain management specialist at Angell Memorial hospital in Jamaica Plain. it took me awhile to decide to make the appointment. e and I have had some not so great experiences at angell over the years (one including a test-crazy intern, a $500 bill, and our finding out in the end that all we needed was an extra litter box for our elderly cat [which a non-Angell vet had to tell us]). a few months after the amputation surgery I had made a silent pact with carver-no more vet visits, no more invasive tests. but the home visit vets (maija and emily) had recommended her, and carver was obviously not doing well, not wanting to walk at all. about a year ago I had set aside money for the end of carver's life. i have guarded that money with a tight fist, but finally realized that if I did not spend some of it, the end could be coming sooner rather than later. so, appointment made, and off we went.

our awesome neighbor friend ryan drove me, e & c up the street to the hospital (it is literally up the street, about a 5 minute walk, if carver could still walk). we met with dr. M last friday. she is a wonderful person, really present. the appointment started with loads of questions, about his diagnosis, surgery, recovery, treatment, and current decline. she did a physical exam and then asked us if we wanted to do x-rays, which we did, just 1 view of his lower spine. we wanted to rule out the possibility of the cancer having spread to his spine and to eliminate the possibility of there being a mass in or around his spine. the x rays showed no cancer returning, but what she suspected, which is lumbar spinal stenosis. basically some of his lower vertebrae have shifted their angle, and are pressing on the nerves of his spine.

the big surprise of the appointment was that she also diagnosed carver with canine cognitive dysfunction, or ccd, or doggie Alzheimer's, if you will. this explained the staring at the walls and barking. more on this in a moment.

we discussed doing an mri to confirm the diagnosis of stenosis, and the option of surgery (both of which i declined)
we talked about quality of life, and she did help me by giving me the most basic of things to look for and consider-can he walk, go to the bathroom without assistance, I can't remember the other things, but it grounded me in a way that the number system that m & em gave me could not. it gave me some bench markers to pay attention to.

then we discussed meds. she started us on a program that has room to grow, lower doses of med that can be slowly raised. (i will write the protocol at the end of this post.) we discussed prednisone, which I had brought up to m & em, but the side effects of the drug sound like a horror show, including the need to first ween him off of the deramaxx, a process which he would have to take narcotics in order to stand. We have taken the prednisone option off the table for now. I left with the promise to check in with her early this week, and we will begin the process of tweaking the medication.

I walked out of the hospital feeling totally drained, and not a little confused emotionally. it seems like all the good news was mixed in with bad. it was great to see that the x-rays did not show any cancer, but the stenosis is a terrible thing. and in a way if we had seen the cancer returning, we would have a more clear view of what to do. I think a part of me wanted to know something concrete-something that would make our decision making more clear cut. the stenosis is degenerative, so we know things are going to get worse. and then there is the CCD. I was relieved that carver's crying in the evening was not due to built up pain. but still, it is heart breaking to hear him cry no matter what the reason, and the thought of him feeling afraid or confused makes me feel awful. I grew up with my grandmother, and took care of her for a time when she was succumbing to Alzheimer's. I was 14 at the time, and she would have had days where she was terrified, when she didn;t know where she was and wanted to go home, when she would speak only in Gaelic. I can only hope for a dog that it is a less terrifying, painful experience. I spoke with a friend in the bonecancerdogs yahoo group who shared with me that her dog with CCD got to the point where he did not recognize any of the family members.

So, onto a little good news. Carver has shown steady, subtle improvement over the past 5 days. he slept all day saturday, i think partially traumatized by the appointment. we began to put olive oil & some raw pumpkin into his food to help his digestion -he had been constipated since he began the gabapentin a week or soon ago. By sunday his digestion returned to normal. By monday we noticed carver was having an easier time getting up and rolling over. he showed interest in a neighborhood dog who came by to visit. carver even met me at the door when I returned home from work! I worked a double on tuesday, but ryan (who came by to take c out & give him meds-thank goodness for ryan!) & e both reported that he was doing well. carver even walked to the door of where e was sleeping to let her know he needed to go out in the morning. these all sound like simple things, but they are things carver has not done in a while. it is strange how quietly things change, what becomes normal when you are not looking, or when you do not want to look. if anything, seeing him improve gives me an idea of how bad things had gotten, and gives me a view of what "bad" looks like, for the future, when I will have to access how he is doing, in a big picture kind of way. I have begun to do daily assessments, trying to look objectively at how he is doing day to day, both physically and mentally. I find this process incredibly helpful, a way to check in with myself about him, separate from the moment to moment taking care of his needs.

I think the main thing I took away from the appointment was the fact that the odds are much greater at this point that we will have to make the decision to euthanize carver at one point in the future. I really was still praying pretty hard that it would not come down to this, that he would be able to live out his life and die a natural death. but I am know realizing that we are going to come to a point before that where we can no longer manage his pain, or that he will no longer mentally be with us, and we will have to step in. dr.m admitted that our situation is the hardest, where we most likely will not see him failing in the traditional sense, where he will stop eating, get weak etc-all the signals you would look for to know when "it is time". we will have to rely more on our knowledge of carver, and our ability to judge his pain.

to close this update I really want to emphasis how much I like Dr. Lisa Moses, and to recommend her to anyone in the Boston area. She was great with carver and even better with us. she is knowledgeable and compassionate, and has dedicated herself to relieving animals of pain. here is a link to her practice:

dr. lisa moses @ the mspca

oh, and a very important detail-she told us about the pharmacy at costco. we used their online pharmacy, and reduced carver's monthly medication bill from $250 to $50. you do not have to be a member to use the online pharmacy & shipping is free if you plan ahead and place your order early. this has been a huge relief. thank goodness for costco!

carver's new med regime

tramadol, 50 mg, 2 tablets, 3x daily
deramaxx 75 mg, 1x daily
gabapentin, 300 mg, 2x daily
Amitriptyline, 10mg, 1.5 tablets, 1x daily
melatonin, 3mg, 1x daily, to help sleep

13 months and 3 legs

yesterday was the 13 month anniversary of carver's amputation. it has continued to be a difficult week. carver had seemed to be doing worse after the vet's visit. e called me at work yesterday morning with the idea that maybe it was the new drug that was making him weaker. after many calls with the vet, who did some research and said, sure enough some dogs have a reaction of being weaker on the gabapentin. so we decided to take him off the drug until monday, then put him on a very low dose. in the meantime, carver spent yesterday evening crying. unless I was lying right next to him, and sometimes even then, he would cry. the thing with carver, is crying is the new everything. where he once had a myriad of different expressions and ways of communicating, now it is all the same cry, which equally breaks my heart and puts me into a panic. it is like having a newborn baby. at every cry, I try every possible answer-do you want to go out? I shake the harness. offer him his food bowl, and then the water. sit down next to him and pet him. get angry and start telling him to settle down, after an hour of staring at the closed blinds and crying. go into the kitchen and cry myself for being such a jerk and for feeling overwhelmed. carver and i had always been so linked-i could tell by the way his ears tilted what he was looking for. I have been mourning that loss of communication. anyway, we ended up giving him a 1/2 dose of the gabapentin, fearing it was the lack of the new drug, and that he was in pain. he did settle down, as did we. I woke up at midnight with my heart thumping wildly because I could hear him crying in a panicy way. I ran to the living room where he sleeps and could not find him. he had made his way into my office, where a bed for him is by the door. I think it was the closest he could get to me. I had taken out the runner that leads to our bedroom for a party we had, and had removed the bed-he has not slept in there with us in months, and did not think to replace it. I quickly got dressed and took him out where he peeded, then ran around the yard at a frantic pace until he pooped some. we came in, he to his bed in the living room. I set the alarm on my cell phone and curled up on the couch to be near him in case he needed me again.

I had a longish day today, and had carver's friend l come to just sit with him for a couple of hours. I have grown very protective of him, and am having a difficult time trusting anyone to take care of him, but he loves l and she loves him, and I wanted him to have some company. she left me a message at 4 saying he was doing well, but by the time I got home at 430 he was sitting in my room again, panting like crazy-he really needed to go out. I fed him when we got in, gave him derramaxx & tramadol, and sat next to him on the floor, where I remain. carver, after panting awhile, is now asleep, snoring away, pressed up against me.

we did manage to get an appointment with the pain specialist on friday, which, while I am not exactly looking forward to it, and grateful to have. I am hoping that we both find a way to control carver's pain and make him as comfortable as possible, and to gain some clarity as to where he is at, some sense of how he is feeling, some sense of something. I feel like I know very little and yet have to make all these decisions. I feel totally helpless and desperate to gain some sense of control, which is like trying to put a rope around water. I want to be able to put all of this anxiety and fear aside and just be with him. truth is I want him to get better or I want him to die peacefully in his sleep. thats not to say I don't want him right here, right now, by my side. I am just terrified at having to make any decisions for him.

stress and fear

truth is, carver isn't doing well. I had convinced myself that the new pain meds (gabapentin) that he has been on, along with the tramadol & derramaxx, had been managing his pain, since he seems to be resting comfortably inside. but having spent 3 days at home with him, I cannot deny his total lack of wanting to walk at all, and that that means he remains in pain. he has a tough time getting himself up. he heads to the door with a lot of enthusiasm, but once we get down the stairs he does only what he needs to then wants to go back in. i have spent the last couple of days online, researching other meds, driving my vets crazy with emails, afraid to tell them the whole truth in fear they will say that "it is time", when i feel deep in my gut that it is not. but I am beginning to realize if he stays the way he is now, that that time will be soon. I have been very anti vet office and very anti testing for a while now, but have decided to go see a specialist at Angell memorial, whose specialty is pain management. dr. Moses was recommended by my home visit vets. she has been on here & now, on npr, and is one of the only vets in the country doing this work. and she is right up the street. so, I have a call out to her office (they are closed today) and now that the decision has been made, can't wait to get an appointment. I just want so much much for carver to be comfortable, and to be able to walk some, to enjoy his time outside, to enjoy his final months. I feel a little bit more calmer, having admitted to my vets the whole truth, really to having admitted the whole truth to myself, and to have taken some action, the most I can do today. but still, I am terrified. what if Dr. Moses says there is nothing she can do? what if this appointment, tests & treatments are more than we can afford? I guess I finally came to the realization that the not knowing is killing me, my anxiety levels are so ramped up that i can't concentrate. so knowing, in any light, will be better than this constant worry, the relentless questioning.

happy valentines day!

arthritis

you know the seven stages of dealing with death? I have spent a good part of today in anger, and a better part of it trying to figure out why. the home visit vets came yesterday to look at carver-strong, wonderful doctors who treat both carver, e and i with honesty and kindness. I asked them to come after noticing that carver was experiencing a definite lessening of mobility over the past week or so. I thought it was the cold and ice at first, and maybe that was a part of it. but we began to notice that carver held his tail firmly down and close to his body. and then it became clear that he was having a more difficult time getting up from lying down. he becomes more clingy when in pain, crying unless I am sitting next to him on the ground, with my arm around him. I made the appointment on friday for monday. sunday went o.k., but monday morning when we went out for a walk he got outside, sniffed the air, considered the stairs, then turned around to go back in.

the appointment was good, I guess, in that carver looked in some ways better than the vets had expected. I knew by the questions the vets asked at the beginning that they were looking for signs of carver declining, for signs that the cancer has spread to his lungs, etc. But she said his lungs sounded the same as they did 3 months ago, not perfect, but not worse. she felt along his spine, and when you reach a specific area on his lower back it is clear that he is in serious pain. a new drug, gabapentin was prescribed, along with intermittently upping his derramaxx, and continuing to give him a full 3x daily dose of tramadol, which we had upped from 2x daily when he began to exhibit more pain. the vets talked with e and I about judging his pain level, to help keep track of how he is doing, and how to know when he is having more bad days then good. which, of course, leads to the discussion that i have been having in my own mind for months now, about the end. I first contacted these home visit vets over the summer for the purpose of preparing myself for the possibility of carver'seuthanasia, which i want to be done at home. I wanted to have all the information ready so I did not have to figure it all out in a more difficult time. I feel like for months I have been preparing myself for this reality, all the while secretly praying that carver goes on his own, peacefully, so i am not faced with that decision. but basically there is no preparation for such things. I found the wind knocked out of me as I sat in cvs waiting for carver's new prescription to be filled. there is something about the new drug, which stops the brain from registering pain, rather than actually helping the source, that makes me realize we are really moving towards hospicing carver, rather than healing him. I have never had any delusions about him getting better, knowing that the cancer is usually aggressive, and knowing his age, the statistics etc. we went into this, the surgery, as a way of relieving him of his pain and allowing him to live out his last days with as much joy and grace as he could, and we truly have done that, and have been blessed with so much time. but I think the time has lulled me into a strange complacency, just going from day to day, not really holding the whole truth. I think in some ways this was good, for it allowed me the luxury of being with carver as girl and dog. But I do know that the reason i have not posted much in these past months has been a desperate need to not face this, to avoid being in this pain. and after yesterday, after carver's appointment, the pain of it all seems unavoidable.

so, about the anger. I found myself feeling angry that it is arthritis that is going to probably get him, after his having been able to fight off the cancer. this seems just stupid to me somehow, although when I think of it it is probably something to be grateful for, arthritis hopefully being less painful than cancer. I found myself feeling angry towards the vets, for bringing up the discussion of having to make a decision around his death, even though that is why I brought them there, and they did it with compassion, honesty and a directness that made the discussion possible. I felt strangely angry at e, just for being there and being witness to the whole thing, for being invested, a part of things, having an opinion. I fought off the urge to take carver under my arm (impossible) and run off with him, just the two of us. I realized today that on some level carver's death feels very private to me. e is a wonderful mom to carver, and he loves her with such depth and joy. but for many years it was just c and me. i remember holding him in my arms for the first time in vermont. that first night, when I was sleeping on the floor of corey's moms apartment, carver in my arms because he howled if left alone, i whispered into his ear that i was so happy to have him in my life, that i would do the best I could to take care of him, and to give him the best life that I could. he was my constant companion, taking three hour walks to the arboretum, endless summer evenings at the pond. it was through carver that I healed from both my father's death and from a heartbreak that followed a year later. It was through carver that I made some of my dearest friends, and made jp truly my community, my home. I learned how to talk to strangers through carver, and how to expect the best from people. he dragged me out of the house every morning and gave me something to come home to, long before I had found love of my own. he was my love.

I have learned to share that love with others, and to share him. and now I will learn to share his death. when i lost my father, i was the only member of my family to be alone, without a partner. I felt so alone in grief, but in some ways it seemed easier to me, to not have to worry about someone else's feelings. carver and I began this journey just the two of us, and there is a part of me that feels protective of that closeness, but really I know I am just being protective of myself. it is harder to deny his pain, or my own for that matter, when there is someone to witness it. but the mistake I made in my father's death was that by not sharing my grief with others, I was denying their own in a way. isolating myself in my own grief kept me from feeling anyone else's pain. many people mourned the loss of my father, as they will carver, e especially. carver loves her in a grand way, tail loudly thumping when she comes home. he has come to know peace only when all three of us are together. we will face his death together, and together we will mourn. learning to let others in is one of the greatest gifts that having carver has taught me, among so many others.