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Five Weeks Post Surgery
Wednesday April 22nd 2020, 4:45 pm
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April 22, 2020.

 

Ohhhh where to begin … I suppose where I left off last ….

On April 15th I took Akeela in for her 2 week post chemo blood work test. I mentioned to them how she had still been incessantly pacing around at night panting heavily. She would also continue to let out little (but sometimes large) yelps throughout the day. After her exam, the doctors had reason to believe that the cancer had metastasized to her spine. This only occurs in about 7% of dogs and after diagnosis they usually only live around 3 months. I decided to move forward with the CT scan, since that would completely change treatment options. My best friend – who also happens to be the pawrent of Akeelas boyfriend- drove out and cried in the parking lot with me while I awaited the news. After what felt like an *eternity* the doctor called me back with good news! I literally cried tears of joy 😭 The cancer had not spread to her spine! They did note that she is still very inflamed, which is unusual that far after surgery (4 weeks). They also noticed that she has a disk that is just barely bulging to the side, but she does not act in pain when this area of her body is touched, so they didn’t think that is what was causing her most discomfort. They cut back on all the new meds we just started, began a 2 day cleanse, and then started on a steroid known as Prednisone (to help with the inflamation). I felt like the doggy gods were truly looking out for us that day πŸ™Œ The pictures below are the messages that the nurses sent me before and after her CT scan. If you are ever going through this with your dog and live in Colorado, I highly recommend Aspen Meadow Veterinary Specialists. They genuinely care about Akeela and our overall wellbeing.

I felt incredibly relieved to hear that she did not have cancer spreading through her spine, but at the end of the day, the Oncologists couldn’t really tell me exactly why she was still in so much pain. Which is why I ended up at the Boulder Oncologists office the very next day – Alpenglow. Alpenglow is the ‘sister clinic’ to Aspen Meadow. Because of Covid 19, the Doctors are not working their regular shifts, which is why I ended up at Alpenglow.

I took Akeela in around noon the next day, because she was absolutely inconsolable. The anesthesia from the CT scan the day before was completely out of her system. She was pacing, panting, drooling, whining, yelping, and I could not get her to settle down no matter what I tried. This was even more devastating, because for the first time in a week she had actually slept through the night. How was it possible for us to keep doing these 180 degree turns with her health?? I was hesitant to bring her back to this clinic after my 2 am visit I had with them the weekend before. There was a snafu with her medication (they sent it to Walgreens) and it took me almost 24 hours to get it filled. The Oncologist on site never called me back, so I ended up calling the Longmont office and pleading them to get it filled. Coincidentally one of their Oncologists happened to show up that day, even though she was scheduled to have it off. They had my prescription filled in less than 30 minutes. I never heard back from the Boulder office.

Well, the Doctor at the Boulder location gave me a call after her exam (due to Covid19 nobody is actually allowed inside the building). She said that even though my regular Oncologist could not find anything in her CT scan, that she still had reason to believe that Akeela had a metastasis in her spine – um what? I had literally just spent an entire afternoon crying in my car and spent a whopping $1300 to hear that she DIDN’T have cancer in her spine … now this Doctor was telling me (very casually) that she did? No no no. That can’t be right. She then proceeded to tell me that they were going to put a Fetanyl patch on her back. It could take 24 hours to kick in, but would last up to 3 days.Β  If this didn’t work for pain, then her next recommendation was to leave Akeela at their office for 12-24 hours while they pumped her with heavy pain drugs. This would supposedly “break the pain cycle.” Hmmmm. And before the conversation was over, she (once again very casually) mentioned that I may want to start considering HUMANE EUTHANASIA. I decided that day that I would never be returning to the Boulder office. In fact, I would not go to them if they had the last Oncologist in the state of Colorado.

Well …. as I’m sure you could all guess … the Fentanyl did absolutely nothing. By this point I had racked up a couple thousand dollars in vet bills over the past couple of weeks. I didn’t want to bring her back to the Oncologists, because after all these visits nobody could tell me WHY she was in pain. During the day she seemed like her normal happy self – sleeping, jumping onto the patio, bringing me her dead babies (what we call her destroyed stuffed animals), wagging her tail, and so on. At night she turned into an absolute demon. So I did what I could – booked her a ton of Acupuncture appointments and stayed up all hours of the night consoling her. On Sunday night I had finally had enough (was about 9 days of no sleep at this point) and tried the ‘tough love’ technique. I kicked her out of my bedroom at about 4 am. Welp, I sure learned my lesson. Although I did get about 3 hours of poor quality sleep, she on the other hand, decided that her foot was a tasty treat and turned it into a bloody mess. I just couldn’t catch a break.

Fortunately we had our follow up acupuncture visit on Monday at the same place that she gets her chemotherapy. They removed her (useless) Fentanyl patch and cleaned up her foot. They also prescribed a sedative/anti anxiety medication known as Trazadone. I had to carry her up the stairs because she was SO tired after our visit. I thought to myself – “Yes, this is it. We are finally going to turn this around.” Well, as I’m sure you know my story goes so far … it didn’t.

I had spoken with the wonderful founders at Tripawds Community on their chat portal the day before. They recommended that I visit Dr. Downing in Windsor – which is about an hour north of my location. She specialized in pain management and had extensive experience with animals suffering through ostesarcoma. I later found out that she herself went through this with a Great Dane a couple years back.

Our appointment was yesterday morning – Tuesday the 21st. I had gotten about 2 hours of sleep the night before. It had now been about 11 days without a full nights sleep. I’m not going to lie, it probably was not safe for me to drive to her appointment. In aviation we have an “IMSAFE” checklist that we go through before deciding to take flight. We have to determine if we were being affected by illness, medication, stress, alcohol, fatigue, or emotion. If we mentally noted ‘yes’ to any of those, then it’s not safe to operate an airplane. I definitely did not pass the IMSAFE checklist. I was delusional, exhausted, spacey, and was having very dark thoughts about Akeela. At one point in the night I even found myself being spiteful of her. When I recognized that thought I immediately began sobbing. It wasn’t her fault and I knew that. Your mind goes to some dark places when you don’t sleep for almost two weeks ….

Well, I’m writing this post now so you know I made it safely to our appointment and back home. I wanted to wait to post until at least the day after our appointment, because we had experienced so many dramatic ups and downs over the past two weeks. When I left Dr. Downings office I felt a different kind of hopeful than I had with the oncologists all those times before.

When we arrived, I called the front desk to let them know that we had arrived, as this was common practice for all other clinics. The receptionists sounded a little confused and told me that I was welcome to come in, so long as I was wearing a mask. Wow! This was the first timeΒ  that I would actually get to be present for her exam! I was thrilled.

Dr. Downings office is what’s known as a “Fear Free” clinic. They encourage pet parents to come in with their animals, since this is what’s most soothing for them. They also play reggae music softly in the background, because apparently studies have proven that dogs enjoy reggae music. Lastly, they had a humidifier that released pheromones into the air, which also aids to calming dogs down. Their entire office is set up in a way to make dogs as comfortable as they possibly can be (given the circumstances).

After Akeela’s exam with Dr. Downing I FINALLY had answers. She had read through Akeela’s expansive history before our appointment, so the exam was fairly quick. It felt like she knew what the problem was even before we arrived. The physical examination just confirmed her theories.

So bad news first: the bulging disk in her back is likely adding to her pain, it just may not be directly in that specific area, her back muscles are still incredibly sore and spasmy from over-compensating the missing limb, and her spine has arthritis. ARTHRITIS. Of course, this isn’t really something that can be proven, but Dr. Downing said that for being a large dog and at her age (13) it would be almost impossible for her to not have arthritis. THAT MAKES SENSE. She said that Akeela was experiencing back pain and muscle soreness before the surgery as well. Removing her limb just drew attention to that area and amplified the problems that were already there. That is a much better explanation of her back pain than what the Boulder Oncologists said – quick reminder: cancer metastasizing in her spine, even though nothing could be found in the CT scan.

She is also experiencing nerve pain from the amputation, which will never go away. This is currently the main cause for her agony and is what’s causing her to make those god awful, high pitch blood, curdling ear piercing yelps that will haunt me for the rest of my life. Dr. Downing also explained that her nerve pain is also what’s causing her infatuation with her foot, as it now feels different than it did before. Her new gait is also putting pressure on her outside toe, which is causing her toenail to rub and giving her more reason to pick at it. So at least I have an explanation for why she is suddenly so obsessed with chewing on her back left foot in the middle of the night.

Dr. Downing also believes that Akeela is experiencing Cognitive Disfunction Syndrome, which is likely causing her crazed behavior at night. There usually are more symptoms than just one, but not in all cases. A big event (such as the amputation of an arm) can trigger this in older dogs.

The Doctor said she is about 8/10 on a pain scale. And that’s with her daily dose of 300 mg Gabapentin 5xs a day – not to mention the mix of random other medications we’ve tried over the past two weeks.

Now, finally, the good news: Dr. Downing thinks that we should be able to get her pain under control over the next few weeks. We are cutting out some of her previous (unhelpful) medication and adding some new ones. 300 mg Gabapentin 5xs a day is now becoming 600 mgs 4xs a day. I had read on the tripawds page and had heard from instagram-buddies that many dogs were on larger dosings of Gabapentin. I asked my Oncologist about this at our last appointment and she said for a dog her size, they would not recommend increasing her dose. Well – we are now going from 1500 mg per day to 3000 mg. And she hasn’t. yelped. once. since our appointment.

We also added Yumove hip and joint supplement (to replace Dasaquin) and Senilife to aid with her anti-inflamation medication that start in 10 days (having to phase out the steroid). We went over a LOT of information, but she explained how each one of these new supplements is actually better for dogs that are going through chemotherapy and will compliment what they do.

We are also adding Melatonin to her nightly routine and she is sporting a fancy pheromone collar to help soothe her through the night. It’s tough to say if the collar is helping at all. They last up to four weeks and are only about $20, so not the worst investment if it actually has an effect on her. I purchased her Melatonin at my local grocery store. The most they manufacture them in are 10 mg – but her dose is set at 50. So she gets a LOT of pills at night.

Because she is going through chemotherapy, Dr. Downing recommended avoiding raw foods since she has a weakened immune system (literally never even crossed my mind). She is now eating canned Science Hill puppy food- and freaking loves it. She has been a picky eater for the entire 13 years we’ve been together. I never considered feeding her puppy food. Learn something new every day (or lots of somethings in my case).

Dr. Downing also recommended that we continue with acupuncture. We have 2 visits a week booked for the next two weeks. I am hoping that this will at least help ease her back pain. The clinic also does laser therapy, which should help with her incision that’s had a difficult time healing.

I will note that I was initially surprised when she recommended that I stop supplementing Akeela with CBD oil. Everyone always recommends CBD! Well, it turns out that only a few CBD companies in the US actually have studies where they’ve tested on dogs with Osteosarcoma. Most published studies (which are minimal) on CBD were done on dogs with arthritis. Because we don’t actually know how CBD will affect dogs with Osteosarcoma specially, she recommended we hold off on that.

We have a follow up appointment with Dr. Downing in 10 days. She will do a pain exam to see how far we’ve come along and will start Akeela on a new anti-inflamatory (that doesn’t interfere with chemotherapy) at that time. It turns out that steroids usually aren’t recommended to be used in combination with chemotherapy. And a side note: after our appointment I looked online at all the new supplements and was able to find them for about 30-40% cheaper than what I paid at the office. If they prove to work for her, then I’ll be ordering refills from the great wide web. 1800 Pet Meds had most of them – if anyone else has recommendations, I’m all ears!

Also an unrelated bit of good news that we heard – Akeela is not actually blind! Every doctor we’ve seen over the past 6 years have mentioned that she has severe cataracts. I remember the first time I heard the news from a vet, I started bawling my eyes out … ohhh if only I knew the cruelty that the world actually had in store for us. I would have saved my tears. Dr. Downing said she actually has something known as ‘lenticular sclerosis.’ It essentially just causes a hazy hue in older dogs eyes and does absolutely nothing to affect their vision. So I consider that a little win for us.

I was worried that all this medication may hinder her living the best life – or more that I was concerned that her life would be shortened because she does have chronic pain from amputation. Dr. Downing assured me that this was not the case, and having a pain treatment plan in place would help extend the life that she has left with me. She also said that once Akeela’s pain is managed (she has hope that we can get to a 1/10) she should be able to go on hikes again and run around with her boyfriend. This made me cry, because for the past few weeks I’ve just been thinking about how she’ll never be able to rough house like she used to. You would NEVER guess her age if you watched her play with other dogs. She was always so agile and so freaking fast – leaping over other dogs and running circles around them while they tried to catch her. It was relieving to hear that she can still have a fulfilling play-filled life.

I was supposed to take my commercial pilots license checkride last month, but due to Covid19 and my new financial obligations (otherwise known as vet bills)- that has all been put on hold. After I got my license, my plan was to get a charter-flight job somewhere tropical and touristy so that I could build hours. Of course that would mean moving and having a job where I would be traveling most of the time. If Akeela only has a year left of her life, then I want to be with her for it. So yesterday I signed a year long lease on a new house with my best friend (and Akeela’s boyfriend) that has a obscenely large yard — and is almost entirely carpet! I plan to give her the best last year that any dog can have.

So there’s a rundown (in less sciency terms) of our visit. It was a LOT of information to process, but it all makes sense and seems like we finally have a glimmer of light to follow πŸ’› I had reached a standstill with our oncologist, as they had exhausted their pain treatment options. I am still in shock that the Boulder office recommended euthanasia.

I slept through the entire night for the first time in 11 days last night. Akeela only changed positions ONE time – which I only know because when I fell asleep she was facing one direction and when I woke up she was turned the opposite way. And she hasn’t let out a yelp in over 27 hours. Experience has taught me that I shouldn’t get too exited or hopeful, because everything can change within the next hour … but for now, we’re good. I am at ease knowing that we have Dr. Downing as a resource now.

I cannot begin to describe how thankful I am for Dr. Downing and for Tripawds for recommending her to me. I am going to write her a GLOWING review later this afternoon. As I type this out, I am tearing up again, because she truly was a LIFE SAVER. It has been a very emotional couple of weeks, and for the first time I actually feel like we are going in the right direction.

 

 


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7 Comments so far

You should see the happy tears in my eyes right now. I am so, so elated that Akeela is on the path to feeling good, and that you sound sooo much better too. YES! YES! YES! What a beautiful thing to know that you found a way to help her.

We give a lot of tips to people when amputation recovery doesn’t go quite as planned, but not everyone is up to the challenge of advocating during an emotional, heart-wrenching time. Many people give up and take the vet’s word without question. But not YOU my friend. YOU are a rock star. You followed through with your gut instinct. And now Akeela is hopefully resting right there next to you, cuddled up and getting the R&R you both deserve.

I know it wasn’t cheap, the bills have to hurt, I’m so sorry for that. But the reward of knowing that Akeela can live her remaining years as a happy, healthy Tripawd. And now you also know what real pain management is all about, which will benefit all the doggies you have in your life from here on out. Awesome!

For my own selfish reasons I am so glad you shared this update. That’s because Akeela’s story is going to be one of our all-time most referenced blogs when it comes to difficult recoveries. I know that’s probably not the distinction you wanted in our community, because we all know that Akeela is SO much more than a Tripawd. She’s amazing in her own right. But just know that her story here is going to help others forever. I can’t think of a better example to show people that even when things are darkest, there is hope.

When this pandemic is over, we (Admin and I, with Wyatt Ray) will head to our usual spot in Fort Collins for summer and fall. When we do, I would love to meet you two in person and give your rock star girl a big big smooch! Until then if you want to talk, give me a call on the Helpline, I’m always there on Wednesdays.

Lots of love & hugs arecoming your way from all of us!

   jerry on 04.23.20 @ 2:05 am    Reply

    I cannot begin to describe how thankful I am to YOU for recommending Dr. Downing to me. It saved Akeela’s life and my sanity. I will be forever grateful! It never even crossed my mind to look for a ‘pain management specialist.’ I didn’t even know they existed! And Dr. Downing has such extensive experience specifically with dogs suffering through Osteosarcoma recoveries. She was our savior! So were you!The past two weeks were incredibly dark for us, but I knew I couldn’t give up until I had exhausted every option out there. It was frustrating to read and see all these success stories of dogs having perfectly quick and happy recoveries. Even the Oncologists kept saying how ‘abnormal’ and ‘unusual’ our case was. I am just so relieved to have connected with someone who understands what we are experiencing and has the knowledge of how to get her pain under control. I’m sure our next couple of weeks won’t be seamless, but I do feel like we at least have the resources now to keep heading in the right direction. From the bottom of my heart- thank you so much!!! My mom thanks you too! Haha. Akeela and I would LOVE to meet you two when you make your way over to Fort Collins!! Please let me know when you are in town! πŸ™‚

       akeelaisthecutest on 04.23.20 @ 2:39 am    Reply

Oh my gosh I’m just elated that we were in the Chat room when you showed up, it was meant to be.

I know the success stories can be so upsetting when you are going through a difficult recovery. We try hard to balance all of the stories out so that people can hope for the best and prepare for the worst, it’s such a fine line. Akeela’s blog will be one of those worst-case-scenarios for sure, but imagine how many people will think “I’m not alone! There IS HOPE!”

As for not knowing about pain management specialists, most pet parents don’t and as you’ve discovered not enough vets do either. To think that Dr. Downing is so close to you and that none of the practitioners in Longmont/Boulder mentioned her practice, is doing such a disservice to their patients! It’s our dream to have a Dr. Downing in cities all over the country, and until then, we will keep educating members about the importance of finding someone like her when a tough situation like yours happens.

Yes, we will have a party when we meet! You are awesome and so is Akeela!

xoxo

   jerry on 04.24.20 @ 5:58 pm    Reply

    Last night was the FOURTH night that Akeela slept through the night. So I’m finally at the point where I’m like wow…. we actually might be on the up and up now! There have been a couple instances of pacing, panting, whining, and even the rare yelp, but we are currently in the process of perfecting the dosing of her medications. It is a HUGE improvement from where we were at last weekend.

    And surprisingly nobody at Aspen Meadow had heard of Dr. Downing before! Her current acupuncturist was so shocked at the difference it made for Akeela. Dr. Downing is also an acupuncturist, so the two of them are actually planning on meeting up soon! She instantly recognized how great of a resource Dr. Downing was. So hopefully if the clinic sees other cases like us, they’ll be able to guide them in the right direction! It’s pretty cool that our (though unfortunate) experience was able to help connect people.

    I honestly don’t know what I would have done if I hadn’t met with Dr. Downing. All the ER doctors and Oncologists we met with were stumped as to why Akeela was still in so much pain. They acted like they had never seen it before. Dr. Downing said that a majority of the dogs she sees after amputation actually do need to be on Gabapentin for the rest of their lives. And after talking with other tripawd-parents over the past couple of weeks, it sounds like a lot of dogs experience a version of what we went through (though maybe not as extreme). I don’t know why there is such a disconnect between what the Doctors believe happens post surgery vs what the dogs actually go through.

    I definitely think it’s important for people to recognize that not all recoveries are flawless and that there ARE alternative options out there. I just wish I had known of these ‘other options’ two weeks ago. I trusted that the ER doctors and Oncologists would be able to give me answers…. I was wrong. I should have come to the chat room earlier!

    I’m looking forward to meeting you! πŸ™‚

       akeelaisthecutest on 04.26.20 @ 12:18 am    Reply

      Awwww ((((hugs)))), just saw your last comment from the previous week. You are so right, there IS a big disconnect between the vets who say “oh just go let your dog be a dog, everything will be alright” versus what tends to happen. Nope, not all recoveries are smooth and we see that all the time unfortunately. Most times it’s not nearly as hard as what you’ve been through, I would say your case is a 10 out of 10 for difficulty. And none of that is your fault. We all want to trust that our medical team will guide us in the right direction. When they don’t, simply because they don’t know what they don’t know, it’s an eye opener.

      I’m just soooo sorry for all that has happened and hope that things continue to improve with Dr. D’s help. How cool that you could connect her with your other acupuncturist. Downing is an amazing pain specialist and I hope that some day every vet will be as knowledgeable about pain management as she is. She is a true trailblazer.

      Sending lotsa love to you and Akeela….

         jerry on 05.01.20 @ 4:17 am    Reply

Wow, what a journey! Thankyou for sharing this information. I am so glad to hear that the Gabapentin has helped. I am only giving MrB 1 tab a day, but now I won’t be afraid to up it if needed. If it makes him happier I am all for it!

   badger on 05.10.20 @ 7:11 am    Reply

    The pain management specialist I’m seeing now assured me that Gabapentin is a very safe drug. She said that the dosing we are giving Akeela now is actually pretty light for a dog her weight (whose in as much pain as she is) – 3900 mg per day and she’s about 65 lbs.

       akeelaisthecutest on 05.10.20 @ 4:38 pm    Reply


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