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.