Yesterday, I got the confirmation I did not want. The oncologist consulted with the pathologist, who cut several more sections from Alec's liver biopsy and indeed - finally - found the suspected hemangiosarcoma. Stage III, because it has been found in multiple locations. It boggles my mind to think we received three benign biopsy results. Just a couple days ago, another doctor told me it was "good news." If only I knew biopsies were so unreliable, I could have demanded they retest the sample, especially the first one. If only, if only.
She wanted to get him in right away for his first chemo treatment, so I dropped Alec off at 8am this morning. His blood levels were good so they proceeded with the treatment, a new drug protocol with which she has been working and seeing results. The protocol is one dose of Vinorelbin a week for 3-4 weeks to start. She has seen survival times of between 2-3 months to a year. Big window there. I can only hope it is successful in extending his good quality of life as long as possible. This is a nasty cancer and the average survival time after diagnosis without medical treatment is mere weeks. Early detection of hemangiosarcoma is important, but early detection is difficult because clinical signs do not typically appear until the cancer has advanced. Throw some false biopsies into the mix and well, there you go...stage III hemangiosarcoma in a dog I thought was in perfect health.
The reason I am writing this without hysterically crying is I am exhausted. With Ali out of the house this morning, I found I did nothing but cry. It has been so hard. I do not want to cry in front of him (sometimes I can't help it, but usually I can stop myself quickly). With him gone this morning there was nothing to stop me and it was bleak. My friend Steve called in the middle of this and I cried to him for about 45 minutes. I had not talked to anyone but doctors in a couple days and it was nice to hear from someone, to cry to someone, to utter all the terrible thoughts going through my mind (although not nice for him - I know it is hard to witness a friend in so much pain). Yes, it is difficult to write about this, but I feel so alone right now, and writing here makes me feel some kind of connection because I know at least a few people are reading. And I know people care about Alec, even who have never met him, because we have received so much kindness and support on here in the past.
Now it's time to get Alec's dinner together, complete with 8 different powders, potions, and oils, and then snuggle with him while I read the second of the two books I picked up yesterday, both by Shawn Messonnier, DVM (I read one of his books previously and liked it: "8 Weeks to a Healthy Pet"). Last night I read "The Natural Vet's Guide to Preventing and Treating Cancer in Dogs." Dr. Messonnier is a holistic vet who practices integrative medicine, which combines conventional and complementary therapies to manage cancer. It is a good resource. The other book is "Unexpected Miracles: Hope and Holistic Healing for Pets." I could do with reading some hopeful stories right now, so that is on tonight's agenda.
Finally, in case you are not familiar with chemotherapy for dogs, they do not get sick like people do. This is because the doses used are much lower. The goal in animals is palliative not curative - in other words, not to cure the cancer but to manage it for as long as possible. Quality of life is the ultimate focus. There are occasional side effects (most commonly nausea or diarrhea) though these are usually only seen in 10% of dogs. Of course, quality of life has always been my number one priority with Alec...since the day I adopted him. I have tried so hard. Oops, here come the tears. Time to shut that thought down.
I have the diagnosis I didn't want, but now it's time to move forward and (say it with me) hope for the best.Sweet shepherd in the doorway. That purple disc was filled with peanut butter (hence the towel).
Getting a ride from Uncle Mike last Sunday evening to get his blood levels checked (they were stable [phew!]).
My continued (and seemingly futile) attempts to get a decent picture of me and Ali by myself...I took this one yesterday using the self timer on my camera. I am hoping this weekend a photographer friend will come by and take some (good) pictures of us together.
In the lobby at the holistic vet earlier this week. Waiting patiently and quietly...until another dog came in!
The books I am reading.
Friday, May 21, 2010
First Chemo Treatment.
Wednesday, May 19, 2010
Unexpected results...again (when "benign" doesn't mean benign).
A doctor from the ER hospital called yesterday afternoon with Alec's liver biopsy results. They did two biopsies; one of the nodule that was removed from his liver and one on a blood clot that was attached to the omentum (best I can understand, this is connective tissue that stores fat and is attached to the liver). She told me both test results were...benign. Before you get excited (as I cautiously did), during what I was hoping would be a superfluous consultation with the oncologist today (who specializes in this type of cancer) she said and I quote, "I don't believe the results." I knew last night I should not get too happy, but I admit I couldn't help feeling cautiously optimistic about this news. It seemed unlikely there would be three wrong benign reports and the ICU doctor I spoke with yesterday agreed that the "benign hematoma" result of last month was probably correct in light of the fact that these two news ones both came back as benign. Obviously it made me feel better to think the initial result a month and a half ago was not wrong.
So the ICU doctor told me this was good news but to keep my appt. today with the oncologist to discuss a monitoring plan for Alec's liver (monthly ultrasounds, etc.). When she walked in, the first thing I asked the oncologist (aka Dr. Killjoy) was whether she had seen the biopsy results. She replied, "Yes -and I don't believe them." As my face fell (definitely what I did not want to hear), she apologized repeatedly for "bursting my bubble," but said she has seen enough of these false benign results to not believe them. Damn. Has seen "enough of"... in other words, she has seen this multiple times. She also said it did not make sense for there to be another mass in his liver - benign hematomas do no act that way. They do not spread. She said it is very likely the biopsy missed the cancer. I had no idea that biopsies were so unreliable and none of the other doctors I spoke with made it sound like this was the case. However, the oncologist unfortunately has had a ton of experience with exactly this. She even spent a year of her residency training as a pathologist. She was confident and definitely had the experience and knowledge to back up her reasoning, whereas the doctor last night who conveyed the biopsy results simply said, "Alec is a little bit of a mystery." I wanted to cling to that of course (yes, Alec IS a mystery!), but the oncologist, unfortunately, did not find it so mysterious.
So, after we talked for about an hour, she said she wanted to speak to the pathologist (person who did the biopsies) directly about what he is seeing in the sample, and she also wanted to talk to the two surgeons about what exactly they observed during his surgeries. She talked to me about chemo and she really does seem to be an expert with this type of cancer (hemangiosarcoma - if it is that). She is actively researching and working with some new drug protocols and is in the process of publishing her findings, which is encouraging. If this is what it must be, she seems like an excellent person to work with, a real expert in the field. But she does not want to start giving him chemo drugs (of course nor would I!) until we know what we are dealing with and at this time that is still unclear. She said it could be a"low grade" hemangiosarcoma, which is why it is not showing up on the biopsy results. She said it could even be a different type of cancer. She also said basically it does not matter even if it was something "benign," because it is acting like a cancer, in other words spreading, and she does not like the nodules throughout his liver - especially if they weren't there at the time of his splenectomy (which, according to the surgeon, they weren't. She said his liver appeared healthy when they removed his spleen. But who knows? There was also a lot of blood from the ruptured mass.).
I definitely had a more positive outlook (briefly) last night after talking with the ICU doctor, who said they removed the entire liver nodule (I thought they only got part) and that it was pretty small (an inch). She said the little nodules throughout his liver were really small, the size of pencil erasers, and were not bleeding. She also said she did not expect them to bleed. This made me hopeful but again, this was not the oncologist's opinion. The oncologist is afraid they will bleed, that another mass will develop, etc. And we can't put him through another surgery. It is confusing talking to all these doctors. When the surgeon called during surgery Friday night, she made it sound a lot worse than the doctor who called yesterday (saying the little nodules were bleeding and they could not remove the entire mass, etc.). Of course, the surgeon was the one actually in there observing and the doctor who called yesterday was just reading the report. But didn't the surgeon make that report? It is confusing having seen a different doctor almost every time we have been to the ER hospital, but in a way that's good because I am getting different opinions and perspectives. Although it is confusing it gives me more pieces of information to try to fit together than if I were just hearing one person's opinion. Not that this makes my job any easier (it is so hard to evaluate this sometimes contradictory information), but I think it is probably best in the long run to have multiple input just to avoid the potential of dealing with only one person who may be wrong or incompetent or misinformed. Trying to put a positive spin on it, I guess.
Right now I am waiting for the oncologist to call back after talking with the pathologist and the surgeons. Then we will discuss options. As much as it hurts to know they are (or could be) wrong, I am glad there is someone there now to question these repeated benign results. I don't want to lose any more time. And knowing it could come back three times that way makes me feel slightly better about not pushing last month for them to repeat the test. Honestly, that did not even cross my mind at the time - I really believed the result - but you know how hindsight is.
Speaking of different perspectives, I took Alec to a holistic vet yesterday and he prescribed eight different herbs and supplements. I walked out of there with a small pharmacy; a month or so supply plus the office visit cost me a thousand dollars! But I was anxious to get anything that might help (as long as it will not harm) into Alec's system right away and, again, did not want to lose any more time. However, today during my consult with the oncologist, out of the eight herbs/supplements, she recommended only three. She is not opposed to using eastern medicine; she actually works in conjunction with a different holistic vet and seemed very knowledgeable about Chinese herbs and supplements. She said in fact many chemo drugs originated as herbs, which I did not know. Anyway, she had convincing reasons why this or that one would not be effective (based on research rather than anecdotal evidence) and she seemed trustworthy to me, mostly because she is not closed-minded on the whole subject and seemed to be current with the latest studies in both conventional and alternative medicine. So, too bad I bought all this expensive stuff! But I wanted Ali seen as soon as possible and the holistic vet appt. came open before the oncologist, whose first available slot was today.
Thank you for all the support. These last several days have been very difficult, as you can imagine, but I guess I am cautiously encouraged by the biopsy results...even if they are false, I hope it means the cancer is less developed than one that would readily show up. I know I am reaching, but what more do I have now?? If you can spare a positive thought, I am hoping and praying that Alec stays stable and that his insides are healing and healthy. Thank you so much. I believe in you, Ali!
Tuesday, May 18, 2010
A Cruel Joke.
That's what the "benign hematoma" results were: a cruel joke. They gave me the standard disclaimer when the results came back: that you can never be 100% positive with biopsies and there is always a chance the cancer was missed. But it is supposedly a small chance. This is very difficult for me to write, but I need to start telling people and I cannot bear to send out multiple emails with this terrible news. Apparently the benign biopsy results were wrong and the cancer has now spread to Alec's liver, where they found not only another bleeding mass, but a bunch of tiny bleeding tumors throughout his liver. They discovered this during another surgery Friday night. When they found out how bad it was during surgery, one of the doctors called to ask me if I wanted to "let him go" on the table. She said my choices were to not wake him up, or they could try to stop as much bleeding as they could, sew him up, and bring him out of anesthesia. It was wrenching. As I tried to focus and ask questions the doctor finally said we need to decide now because they did not want to leave him under anesthesia for too long. I told them to remove as much of the big tumor they could and wake him up. I struggled with this. She told me he might have weeks, or days, or hours. She said bleeding out was an unpleasant way to go and I needed to think about this if I brought him home. But how could I make this decision? He was showing no symptoms when I brought him to the emergency hospital that evening. I was just being cautious (or so I thought) when I brought him to my regular vet earlier that afternoon. Before he went to surgery, we took a walk around the block in the beautiful warm spring twilight and he was his usual happy self. They did CT scans before surgery to see if there were tumors elsewhere and those came back clean. So how could I decide to let him go when he was fine right before surgery and the cancer showed no signs of spreading beyond his liver yet. On that basis I made my decision. I had to try to get him to chemotherapy. He would be in the hospital at least overnight and she told me, "he might make the decision for us if he does not stop bleeding in the next 24 hours." Oh my god I can't believe this is happening. But I have to be strong for him. I cannot collapse.
This began two Fridays ago, when Alec began to be lethargic mid-way through the day. He showed no other symptoms - his vitals were normal, he was eating and drinking, and he was alert. But he did not want to go for a walk. He just wanted to lie down. This is very unusual for Alec so after consulting with his regular vet (who was of the opinion that given his history I should not wait to have him seen), I took him to the emergency hospital again. There they did a chest x-ray and blood work. Those came back normal and the doctor told me I should take him home and monitor him to see if he gets worse, basically. He did not. By mid-day the next day he was his old self again. The doctor said his abdomen was slightly painful and I assumed he pulled a muscle (a tech suggested this possibility when I called the next morning concerned he was still lethargic and asking if I should bring him back in). I remembered that his lethargy came on while we were doing his physical therapy rocker board exercises; he balked and did not want to do them and instead went to lie down. Alec enjoys these exercises because he gets treats the whole time so this was unusual. But in retrospect that seemed to fit the theory that perhaps he pulled a muscle in his abdomen and when he was back to his old self the next day I breathed a huge sigh of relief.
He was fine all week and then this past Friday when we woke up it was the same thing all over again. He looked weird when we woke up, ears slightly back, eyes dull, and he did not want to go on his morning walk. He drank a ton of water, which was odd, but he ate breakfast. I called his regular vet again and she wanted to talk with me about a plan of action before I brought him back to the emergency hospital. By the time I spoke with her a few hours later his lethargy had lifted and I had taken him for two walks. The only sign he was showing was that he was acting weird and clingy, following me from room to room, lying down right next to my desk chair, which he never does, looking at me funny. His vet mentioned gas pains or cramping, asked if I had given him any new treats lately, etc. The answer was no. I had an appointment with them for 4pm that afternoon and I asked her if I should keep it given the fact that his lethargy had lifted and by now he was showing no clinical signs at all (except looking at me funny). She said I might as well cancel it because they probably would not find anything in a basic exam that I had not noted (I had already taken his temperature, palpated him, etc...all the obvious stuff) and to continue monitoring him over the weekend. But after I hung up I got a weird feeling and called back and asked to still come in. I just wanted to be sure I was not missing something obvious and I figured it would be good to have peace of mind as we were going into the weekend.
My regular vet's partner saw Alec and he was cheerful and perky during the exam. She decided to do a baby ultrasound (they have a mini-machine there) to rule out fluid in his abdomen. To our surprise she found fluid. She just started saying "I'm so sorry" and sent me over to the emergency hospital (Dove Lewis) to get a full ultrasound done.
The ultrasound At Dove Lewis showed a bleeding mass on Alec's liver. The ICU doctor brought me back and said "I have some scary news." He presented me with a bunch of options I barely understood and I tried to focus and make sense of them (one of them was "hospice and humane euthanasia" and my fragile composure broke at that and I cried out, "what? no!") but eventually he said he had to get going because it was busy and basically I needed to make a decision. He asked if there was anyone I could call to talk it over with. Not really. The main two options were go right to surgery or do something called a CT scan first. He said if I was going to do surgery no matter what, then don't bother with the expensive scan. But if the results of the scan might change my mind about surgery (i.e. if he has tumors in other places, would I still want to put him through surgery?) then it made sense. So I said do the scan and if it's clear go ahead with surgery. He said surgery was the only way to stop the bleeding and see what we were dealing with. I could wait on surgery but it was clear no good would come of that. Alec was stable with no clinical signs when he came in and those are obviously the optimal conditions under which to do surgery.
So I went home and at 11:30pm a different doctor called to say the CT scan was clear and they were prepping Alec for surgery. She said the surgery would be done in about an hour, but that she would call sooner if they found anything else during surgery. My phone rang 35 minutes later. She said in addition to the bleeding mass there were tiny bleeding tumors throughout his liver. She asked if I wanted to just let him go on the table. I think I discussed this part in the first paragraph, sorry I am repeating. I weighed everything and made the best decision I could. They woke him up and she said if he survived the next 24 hours (meaning he did not continue to bleed) and was stable, I could bring him home the next day. He was stable the next day and I brought him home and I don't know what I have been doing since then. I made an appointment with a holistic vet and an oncologist and we will see them this week. I am trying so hard not to fall apart but I fear I might go crazy. Not now, I know I need to be strong for Alec. I tried to find any angle, any remote thing I could hope for, but they couldn't give me anything. I asked could this be another benign hematoma, maybe something else besides cancer, but they said that was extremely unlikely and that even without the biopsy results we can say with 99% certainty that it is hemangiosarcoma (the very bad type of cancer I was so relieved to find out it supposedly wasn't the first time). This is the pattern of hemangiosarcoma. It spreads from spleen to liver, etc., and that fact that it grew so fast in the last month and a half (his liver looked normal during the splenectomy)...not good. You can gain some time with chemotherapy supposedly, but chances are obviously better the earlier you catch it.
To think I have been drinking champagne and celebrating for a month while the cancer was spreading. It breaks my heart. I have been on top of the world since I got the benign biopsy result, thanking my lucky stars, skipping around in a constant good mood and state of gratitude, looking forward to every precious day I have with Alec and now this. It is hard not to feel like a cruel joke has been played by the universe. Like I have done something wrong and am being punished, but I know the world doesn't work like that, and I can't think that way. Mostly I can't think that way because it is too much to bear. I try so hard to always stay positive and to always look for the "silver lining" but this is too much. The "benign hematoma" result was against the odds I know, but I thought we were just lucky, that Alec caught a break. To think I could have started treatment a month and a half ago before it had spread to a vital organ...I am devastated.
I hate to give bad news and I am sorry, but I cannot deal with telling people individually. I am barely holding my mind together. I took Alec back Sunday night to have his blood levels checked and they were stable and even a little higher than after surgery, which is good. I am just hoping he does not bleed again (I am giving him a Chinese herb that is supposed to help stop bleeding - recommended by the oncologist) and that he stays stable long enough to start some kind of treatment so we can have some time together.
Thursday, April 8, 2010
BENIGN HEMATOMA!!!!
I got Alec's biopsy results (BENIGN HEMATOMA!!!!) yesterday, and it was hands-down the best day of my life. Yesterday simply was not long enough, though, so today is also the best day. And probably tomorrow too. And the day after that. It's a miracle. There are just no words. But there IS champagne. And that is what I am doing now. But first I wanted to share the incredibly happy news and also say THANK YOU to everyone who spared kind words, good thoughts, positive energy, well wishes and/or prayers for Alec over the last several days. I just know IT WORKED and I straight up love you even if I have never met you. On behalf of me and Alec, thank you so much. We are so lucky. I can't stop saying thank you out loud. I still think I am in shock. I have never been in shock from happiness and relief before. It is interesting and wonderful. I can't describe it. I wish I could share a glass of champagne with you - although I only have one champagne flute, so yours will have to be served in a jar ;) - but I lift my glass in spirit. I have never had a better reason to celebrate. I propose a toast to hope and love and faith in things not seen. Thank you, thank you, thank you. I hope your evening is as beautiful as mine.
Sunday, April 4, 2010
Hoping for the best.
Alec in the van after getting sprung from the emergency hospital...let's go home!
Nap time! When we arrived home, Alec whined fussily for about 15 minutes and then passed right out. Adorably, he is using his cube toy as a pillow.
I look for good news where I can find it, and upon discharge I was happy to learn the final bill was less than the estimate they had given me (because he did not need the blood transfusion or have other complications). The total was $3,887 and I have one credit card that is still within a 6-month introductory period with 0% APR (I actually got it in Feb. to pay for Alec's new rehab treatments in Corvallis – the ones that unfortunately did not work!). This credit card has a $5,000 limit, and with the $1,000 for the rehab treatments from last month, I still had just enough room to put this bill on it, which is good because my other two credit cards are not in introductory periods and have high APR’s (I originally got both of those for Kobi’s chemotherapy treatments a few years ago and now retain them for emergencies, aka vet bills). Not that I will be able to pay this off in 4 months, but I am glad the interest will not kick in right away!
Of course, we are not out of the woods. Today's bill is truly the least of my worries. Alec’s spleen and the grapefruit sized mass that had ruptured, along with a biopsy of his liver, were sent to the lab and I will not learn the results until next week – they said probably Wed. or Thurs. They told me the regular statistics are 60-70% chance it is malignant, but given his age (9) and breed, the chances is higher. Not the greatest odds, but I am hoping for the best: a benign hematoma. If it is malignant, we will have to begin chemotherapy right away, as this is an aggressive type of cancer. So there is a lot more potentially coming down the pike at us, financially and health-wise, the latter of course and without saying always being the most important, but I am scared about hitting the limit on all my cards eventually (it happens fast; I was credit card debt free only a month ago!). But I will cross that bridge when I come to it. Step...by...step. I am trying to keep my thoughts positive.
For now, he is home! He was so cute when I brought him inside. He lay down on his bed and whined softly for about 15 minutes (I think he was just “telling me all about it,” if you know what I mean). I assured him I was very sorry for leaving him at the hospital for two days but that it was for the best, etc. He even let me cuddle him a bit! Usually my attempts to cuddle him elicit escape attempts, but I think he did not mind being babied a little as I listened and sympathized. It was the cutest whine; I am no dog translator, but I think the meaning was transparent: “I am happy to be home but I did not like being in that hospital at all!” Then suddenly he just fell asleep – passed right out on his bed (yes, he is breathing! Of course I checked!), and now his little paws are twitching as he is probably dreaming about his stay in the ICU. Poor little guy is tuckered out. He went from whine, whine, whine to fast asleep in 30 seconds. I hope he continues to sleep and rest. I know he did a lot of sleeping in the hospital, but I think being home in one’s own bed is different.
We have been fortunate so far. His surgery was a success and his surrounding organs looked good. There were no masses on his lungs (they x-rayed those before surgery). He has recovered amazingly well from surgery so far (knocking on wood!). And dogs can live just fine without their spleens, in case you were wondering. Finally, when it happened, I was here with him and brought him in very soon after noticing he was acting strangely (thanks again to Daniela, the wonderful receptionist at my regular vet, who when I called strongly advised me not to wait). This could easily have happened next weekend when I was at a work conference on the east coast. I had planned for a couple friends to take turns watching him, but I doubt they would have been as alarmed as I was by his sudden lethargy; they probably would have thought he was just depressed that I was gone. They obviously don’t know him as well as I do, and likely would not have realized how strange his behavior was or that it was an emergency situation. I almost didn’t (and if you have been reading this blog you know I am borderline obsessive about observing Alec, just because of all he has been through). He could have easily bled to death if much more time had gone by. So if this was going to happen, we have been lucky so far.
I just need our luck to hold out a little longer. I appreciate all the well wishes and support. It really means a lot. If you could do me a little favor and make a wish for a benign hematoma for Alec, I would be so grateful. I know so many people are pulling for him and thinking good thoughts and it helps so much.
And now…I wait. Love is not easy. It holds the potential for the greatest joy but also the deepest pain. The hardest part about truly loving someone, at least for me, is the intense desire to protect them from harm. You try to do everything in your power to keep them safe, but still there are things you cannot control. That's where the hope comes in.
Friday, April 2, 2010
Not this.
This morning when I woke up, I noticed Alec had vomited a little in the night, or maybe that morning. I had given him a CET chew (dental rawhide chewy thingy) the night before, which I have given him many times. There was a chunk of this along with some food in the vomit. I thought maybe he had an upset tummy because he ate the whole thing before bed (sometimes he chews them over the course of a few days, but not always). When we got up he went right to his water bowl and started drinking...and drinking...and drinking. Finally I called him away before he could drain the whole (big) bowl and took him outside where he urinated and defecated like normal, but he did not want to walk - not normal - and just stood there obviously wanting to come back inside. He seemed weak and was acting strange. I brought him inside, thinking again maybe just a little upset tummy. He went straight into his "little house" (his kennel) and showed no interest in breakfast - very unusual. It crossed my mind he might have some of the chewy hung up inside but I (mistakenly, it turns out) thought he could not be blocked if he had peed and pooped. I called his regular vet and they were booked of course, but Daniella at the front desk (who is wonderful) told me if it was a blockage I would not want to wait; she recommended I take him to the emergency clinic. Even though it turned out not to be a blockage, this was very good advice.
As luck would have it, my annual performance review at work was scheduled for that morning. I was going to take Alec in as soon as it was over. When my boss called at 9:30 am, however, she could tell immediately something was wrong (I have neither poker face, nor poker voice, nor poker anything) and she suggested we reschedule and thank god she did. I took him in right after that and he was so weak by the time we got to the emergency clinic. There were dogs in the lobby and he did not even respond (again, highly unusual) and he laid down while I was at the front desk checking in...also unusual for this normally anxious boy. He was weak and lethargic and clearly did not want to walk. What was wrong with him?
After the front desk called for triage, a tech came out to the lobby. He asked me some questions about things Alec might have gotten into. I assured him Alec was rarely out of my sight, and he was not the scavenger type dog anyway - never has been (that was my dear Kobi - totally different story). I asked, but was not allowed to come back with him. I waited. Someone came and told me they were doing an ultrasound to see if he was blocked. An hour or so later the doctor came out to the lobby to call me back. She did not have a poker face either. My heart sank as the panic rose.
She said Alec was bleeding internally - a lot. There was a mass on his spleen, and it had ruptured. There was no blockage; it wasn't the rawhide chewy I gave him. She said I could not have known ahead of time (as I pleaded, "what signs did I miss?? I watch him so closely!"). She told me there are usually no clinical signs for splenic masses until they rupture. She said cancer of the spleen is common in German shepherds but there is a chance it could be a benign hematoma. As remote as this chance may be, it is what I am hoping for.
The only option was surgery to remove the spleen. They recommended x-rays first to be sure there were no tumors on his lungs, in which case surgery might be futile. They brought him to me in the exam room and I said good-bye to him before the x-rays (he was alert but weak...although he walked in on his own, we had to drag him back across the slippery floor on the blanket because he did not want to walk) and waited another hour. The doctor came out to tell me his chest x-rays were clear. Hurdle one. Then he went into surgery. I came back home as there was nothing I could do and waited by the phone. Three hours later the surgeon called to tell me he had come out of surgery okay and was stable. Hurdle two. She had removed his spleen, which had a grapefruit sized mass on it. They sent his whole spleen out to the lab, and I won't know until next Wednesday or Thursday if it is definitely cancer. Again, if you are reading this, BENIGN HEMATOMA is what we are hoping for!!! Alec has beaten the odds before. He has been through so much. I know life isn't fair, but he deserves a break. The estimate for today was $6,300. If it is cancer, chemotherapy will be an option. And of course, one I will take. The prognosis is only 2-6 months without chemo.
Of course I asked, if it IS cancer (please no!!!!), is there a possibility it was all removed when his spleen was taken out? The surgeon told me no; because of the vascular nature of the spleen, with so much blood passing through (unlike some random leg muscle for example) there is the potential that the rest of his cells have been "showered." He would require chemo.
He came out of surgery three hours ago. The surgeon said I could visit in five. I will be heading to the hospital soon. I am writing this to take my mind off things, to keep from drinking too much whiskey. I just poured myself a finger when I learned he made it through surgery okay. I don't know what to do with myself. I am trying so hard to think good thoughts, but my brain is crazy with worry and anxiety. I don't want to let the bad thoughts in. Whiskey helps. But I can't drink too much because I need to drive to the hospital later.
He will be monitored overnight, his heart, his blood levels, etc. If everything looks good tomorrow I can bring him home. Or it may not be until Sunday. As luck would have it, I am traveling to the east coast for work next weekend. I don't think I will be able to stick to the original plan of having friends watch him now. The emergency clinic does medical boarding. I got a quote: $630 for 72 hours. This might be my only option. I was nervous enough leaving him before this...I can't imagine leaving now without him being monitored 24/7.
In keeping with my previous post about bedside manner, the ER doctor who first spoke to us, Maree Doolan, was wonderful. She was so compassionate and really caring and spent time talking with me until I was out of questions. I did not feel rushed. This is a special skill; its easy for busy vets to inadvertently make you feel hurried. This is also what I love about Kristin Sulis, our regular vet at Mt Tabor Veterinary Care (and her wonderful staff). Our neurologist back in California, Lisa Tieber, shared this quality. I have had lots of experiences with vets and if they could all be like this, it would be great. Dr. Doolan even called to check in after the surgeon had already called with an update. Those of you who have been in similar situations know how much that means...not a perfunctory call, but genuine. One can tell the difference, and it made a difference to me.
Quick note about my previous posts: the laser and VOM therapies I wrote about last time had no effect; Alec did not show any improvements. I was holding off writing that update, for obvious reasons I guess. But I am glad I tried. If only it hadn't been so expensive for nothing to come of it. The doctor was so hopeful at the outset; she was really disappointed he had not improved. Oh well. All of that matters little now. I just need him to get better. Benign hematoma, benign hematoma...and no complications. Please say it with me. Please let him be okay.I just took this photo a few days ago during a stroll along the river front.
Wednesday, February 17, 2010
On Bedside Manner
A happy and relaxed Alec in the treatment room at West Hills Animal Hospital in Corvallis, Ore. Note the physio-rolls and rocker board; both are standard equipment used in canine rehab therapy.
I am happy to report that our visit to the West Hills Animal Hospital last week was a success! Alec and I both loved Dr. Moore. I found her to be very knowledgeable and thorough, while Alec was quite comfortable in her presence. She has a wonderful “bedside manner,” which I have learned is not something to be taken for granted. Alec is sensitive and anxious, but can be made calm relatively easily by the right person.
A case in point of a very bad experience I had in this regard was one of the facilities here in Portland to which I took Alec upon moving here over a year ago. The doctor and vet tech were demonstrating to me how to apply the “soft paws” nail caps, which help prevent dogs who drag their paws from ripping their toe nails. Well, Alec (like many dogs) does not like being compelled to lie on his side, and hates being restrained even more. I warned her of this fact. Yet to apply the nail caps, they held him down -- the doctor on one end of Alec, the tech on the other -- basically bear-hugging him with a vice grip to get him to hold still. Of course, this had the opposite effect and made him frantic; he began to thrash and whine and struggled mightily to get up. This made me uncomfortable, but I didn’t want to be “that client” – you know, the annoying person who tells the doctor how to do things. However, I feel I have become a good advocate for Alec without being an obnoxiously squeaky wheel. I voiced concern (“should you be holding him down like that with his back injury?”) and the doctor said, “He is just trying to see what he can get away with.” Well, be that as it may, he also had multiple spinal surgeries eight months before and I was told by his surgeon and rehab therapists to be careful of his back! And here they are restraining him with a full nelson (half nelson? – I don’t know anything about wrestling, but they were pinning him down) while he thrashed and flailed. Finally, I could not take it anymore and said, “That’s enough. I am not comfortable with this, please let him up.” Which they did, but they were clearly internally rolling their eyes at me. The doctor admonished me: “You baby him.”
I did not think this was fair. I know a good amount about dog behavior, and I know "bad" behaviors should not be reinforced. However, this particular dog has sustained a serious injury to his spine. Furthermore, it should be a positive experience for him to come to any rehab facility, which should factor into how he is treated. Maybe he should be “babied” a little so he wants to come back and do therapy...you can’t force a dog to do rehab exercises, and a little positive reinforcement could go a long way. It seemed this was definitely getting off on the wrong paw with Alec – not to mention with me. This was our first visit and she was not earning my trust with her rough handling of Alec. Veterinary "bedside manner" involves handling the human client as much as the canine patient, and I can sympathize with vets who have to deal with difficult clients on a regular basis. I strive to be pleasant and understanding in my interactions with veterinary personnel; I truly appreciate them and I want them to like Alec and me. But I think my concerns about Alec's back injury were reasonable and should have been respected rather than dismissed.
Afterward, I shared my misgivings about the experience with J., our trusted former rehab therapist back in Calif. (whom I was missing very much at that point!), and she was appalled that they would hold Alec down like that given his surgical history. And J. was always a proponent of rehab therapy being a positive experience for the dog. I didn’t realize this was not an attitude shared by everyone in the canine rehabilitation community. I did return to this facility a few times, trying to keep an open mind (I knew I missed our people in Calif. and realized this could be coloring my experience), but that was not the only negative experience I had, and I finally stopped taking Alec there. It’s unfortunate because, as I mentioned, they are conveniently located right here in Portland! Interestingly, I have not heard any negative feedback about this place from others, and I really wish my experience had been better. But I have to trust my intuition when it comes to Alec and what is best for him.
This happened over a year ago, but it serves as a counter example to illustrate part of the reason I liked Dr. Moore so much. Alec had to lie on his side at one point during the evaluation so she could check his reflexes. I found myself involuntarily tensing up, knowing how Alec would react if they wanted to hold him down. I cautioned he did not like lying down/being restrained and briefly relayed my experience at “the other place” and how Alec only became more frantic. Dr. Moore’s response? “I find belly rubs are more effective.” Ding ding ding! Correct answer. We both rubbed his belly and asked Alec to “stay,” and it was 100% more effective than forcibly holding him down. He was such a good boy (sure, he tried to pop up a few times, but it was nothing like his panicked thrashing at “the other place”). By the end of the appointment, nervous whiny Alec was so relaxed he was resting his head on Dr. Moore’s leg. It was remarkable. I should mention Trina, the lead vet tech who is also certified in canine rehab, was wonderful as well. I was so impressed with both of them, not to mention the clinic itself; even the front desk staff was incredibly friendly and helpful. Why is this place not closer to Portland??
Because Alec’s overall experience was very positive, he will be happy to go back again, which is good because we are driving back down to Corvallis every day this week to try the two new treatments Dr. Moore had mentioned on the phone: cold laser therapy and VOM (veterinary orthopedic manipulation). I meant to write an update about that but got stuck on bedside manner. I guess I didn’t realize how important it was – and how variable – until this positive experience! I think it is something we as human patients can relate to as well: sometimes feeling intimidated by a doctor but not knowing if you should speak up. I have learned to do this for Alec, but it is a tricky balance between asking questions and not offending anyone. Although I have found a good vet will welcome questions and appreciate the fact that, as the person who lives with and observes your dog closely all the time, you are a crucial member of the veterinary team. This is part of the reason I am so happy with our current regular vet here in Portland. She is very patient with my questions (and I ask a lot of questions!) and thorough with her answers. She realizes a caregiver who is engaged and paying attention will make the veterinarian’s job easier.
This reminds me: I am reading a good book right now on this subject called: “Speaking for Spot: Be the Advocate Your Dog Needs to Live a Happy, Healthy Longer Life.” Coincidentally, the author, Dr. Nancy Kay, practices at the Animal Care Center in Sonoma County where Alec had his spinal surgeries, although she never treated Alec and I have never met her. The book, which was published in 2008, is great primer on all things related to being an effective medical advocate for your dog: asking the right questions, finding a vet and clinic you and your dog will love, knowing when to get a second opinion, making your vet appointments less stressful, etc.
Anyway, I will write more soon, but basically Dr. Moore had lots of ideas for new things to try with Alec. She confirmed that his lingering limp is due to a proprioceptive (neurological) deficit, and that the muscles in his right back leg are weakened/moderately atrophied due to his abnormal gait. However, she said he had excellent flexibility and range of motion, which means muscle shortness is not an issue. So she suggested some strengthening exercises I could do at home for the weakness and she thought Alec would be a good candidate for the two modalities mentioned above: cold laser therapy and VOM (veterinary orthopedic manipulation). The catch being that the laser therapy has to be done twice a day (1½ hours apart) for the first three days, then once a day for the next three days, and then every other day, and so on, until it gradually tapers off. The good news is she said we will know by the end of the week if it is working. If we don’t see any improvement by then I will discontinue the therapy. The basic idea behind VOM is it is supposed to open up blocked neural pathways, making it a good modality for dogs with neurological issues. The cold laser stimulates blood flow and aids in nerve regeneration as well, so these two therapies should theoretically complement each other.
So, I took the whole week off work (thank goodness I have saved my vacation days!) and we are making the hour and half trip down to Corvallis every day for the treatments. Speaking of which, we have to hit the road for day 3…more soon!
Sunday, February 7, 2010
Two Year Update: Plateau or No?
It has been two years since Alec became paralyzed after a disc shattered in his back, severely damaging his spinal cord. He underwent a multi-level hemilaminectomy (decompressive surgery) on February 9, 2008 and a second hemilaminectomy four days later on Feb. 13. He came out of the second surgery with no use of his hind limbs, no conscious control of his bowels, and no bladder function at all. Things looked bleak indeed, and when Alec presented for his first re-check exam with the neurologist six weeks later, he was given a poor prognosis for return to normal function, based on the fact that his deep pain perception had not returned. I began rehabilitative therapy with him, just in case, and ordered him a mobility cart (doggie wheelchair), which he used for 18 months. If you have been reading this blog, you know that Alec began to walk on his own about a year later (short walks around the block at first), and six months after that, he stopped using his doggie wheelchair altogether.
As I have written in other posts, the most important factors in Alec’s amazing recovery were: 1) regular physical therapy, and 2) time. Less quantifiable, but also instrumental, were my faith in Alec, and my boundless love for him. It has been an incredible two years, difficult and inspiring, confounding and rewarding. Because our wonderful rehab therapist in California, J., impressed upon me the importance of consistent physical therapy (to give him any chance at all to recover some mobility, as well as to preserve what he had left), I followed her advice very closely. It was a formidable challenge, but we persisted, Alec and I together, and it paid off big time; despite the scary hard times in the beginning, I feel like I won the lottery. Alec has been walking outside his cart for eight months now. His left hind leg is perfect as far as I can tell; his right leg lags, however, and cannot make a complete rotation. The result is he has an abnormal gait, or in layperson's terms: he has a pretty serious limp. It does not cause him pain, and he gets around exceptionallyreally well, but he has to wear a protective shoe on walks. Without a shoe, his foot will became scraped because his paw drags slightly – just enough to tear it up except when he is on grass or another soft surface (he does not have to wear the shoe inside). To complicate matters, his abnormal shuffle-step causes whatever shoe I try to wear out quickly; duct tape and shoe goo have become my allies in the battle against the deteriorating shoe. But neither holds up very well to the toe dragging. This small complication aside, Alec arrives at the two-year mile marker having exceeded all expectations.
After all of these improbable improvements, including what seemed like the pinnacle of Alec’s protracted process of rehabilitation (ditching the cart completely – hallelujah!), at some point during the last six months, I noticed he seemed to have finally reached a plateau. This awareness came slowly. I am with Alec almost 24-7 and even his slight improvements sometimes were noticed by other people before me. It’s like when you live with someone and don’t notice the small physical changes, like a gradual weight gain. Often people will point out to me, “wow, he is getting around so much better than last time I saw him!” – that type of thing. People do still say that, but at some point, I stopped noticing measurable improvements in his mobility (as opposed to his endurance, which we have been working on with faster UWTM sessions and longer walks).
Not that this ostensible plateau bothered me – not at all. Alec had already come farther than anyone had expected, and even when it became apparent after eight months he might be able to walk again on his own, I was told his recovery would very likely not be complete. He may just regain enough ability to walk outside on his own to go to the bathroom and then come back inside, for example. So the fact that he is enjoying hour-long strolls in the park is nothing short of amazing to me! I always knew the improvements would stop. The suspenseful part was when? How well would Alec be doing when he hit that inevitable plateau? The answer, for which I am profoundly grateful, is very well indeed. Limp, schmimp…my boy is walking!
But what if a plateau is...not a plateau? Recently I was emailing with J., our former rehab therapist, giving her an update on Alec and asking her advice about whether she thought I should continue doing the UWTM with him every week now that he was walking on his own and had reached this plateau. Did she think I should concentrate on swimming instead? To my surprise, J. wrote: “I have seen dogs continue to progress 2-3 years out. I would not be surprised if Ali does the same. I don’t think his plateau is permanent.” Huh! I stared at my computer screen in wonderment. This had not occurred to me. I know the scant literature advises the majority of dogs will improve the most during the six months after surgery, but this was not the case with Alec. He continued to show significant improvements way past that marker. Was it possible he had more potential...even after two years? I had to find out.
So after doing some research on rehab vets in Oregon within driving distance, I decided to take Alec to a new specialist, Dr. Julia Moore of the West Hills Animal Hospital in Corvallis (an hour and half drive south of Portland). Alec has been to both rehab veterinarians in Portland, and I thought at this point it would be good to have him evaluated by someone who has never seen him before, someone who will look at him with fresh eyes. I called the clinic last week to ask if it made sense to bring Alec in for an evaluation, given that he is two years out of surgery. Dr. Moore called me to discuss Alec’s situation the next day and I was impressed with her on the phone. I explained that my goal is to learn whether Alec has potential to further improve (and if so, what can I be doing to help him reach his potential?), or if my focus with physical therapy should be maintenance at this point. I have no problem with the latter, but if there is something more I could be doing to help him improve – new rehab exercises or modifications to our routine – I want to make sure I am doing it and not giving up too soon!
We spoke for twenty minutes and she is clearly very experienced in this area. I got the impression she would have a lot to offer by seeing Alec. She also mentioned they are using a relatively new technique called cold laser therapy, for which Alec could be a candidate, and that he could potentially be helped by a modality called veterinary osteopathic manipulation (or VOM). She said she has seen incredible results with these therapies. I am pretty sure laser therapy has been available at other places I have taken Alec, but no one has suggested it before, so it could be that he is not a good candidate; we'll see. I asked whether she had seen improvements in dogs who were two years out of surgery, and she had. She said the first step will be to determine whether Alec’s lingering limp is due to proprioception (position sense/awareness of foot placement), weakness, or muscle shortening, and that there are different things we could try based on which it is. After our conversation, I was very excited for her to see Alec.
They were able to schedule us tomorrow morning, so we will be leaving the house at 7am and braving the rush hour I-5 traffic to head south to Corvallis for our 9:15 appointment. Alec likes to ride in the car, and he will be excited for a new adventure, so no problem there. While I hope she evaluates him and has ideas for new things to try, if her opinion is that Alec has gone as far as he can go in his recovery, I will be happy with that, too. I just want to know whether my focus at this stage should be on maintenance or improvement. I'd hate to NOT be doing something I could be; if this plateau could be temporary, then I want to do everything I can to help him get over it! I don’t want to be greedy, but if Alec’s right hind leg could catch up to his left, and if his gait could further normalize, this would improve things in many ways. He would no longer be in so much danger of injuring his paw, and his body weight would be distributed more evenly. Right now, he still puts excess weight on his front end, which stresses those joints and is not ideal.
So, as incredibly well as Alec is doing at the two-year mark, and as through-the-roof-thankful as I am for every single improvement, if I could be doing something more for him, I want to know about it! This is still a new world to me, and I am continuing to learn. Please wish us luck tomorrow; I will post an update after our appointment. As always, thank you so very much for reading, and for caring.