Sunday, July 28, 2019

7/28/19 Update: Enzo is my Co-pilot. Another Surgery in the future. Never Give Up.

I have been quiet here. I believe that "If you don't have anything good to say, then maybe it's best to say nothing at all."

I have been having some very hard heartbreaking experiences. I am never ever looking for people to feel sorry for me, so I didn't feel posting about all the sadness while I grieved and adapted was necessary.

I am ready to update my blog now.  After all, this is a journal of my life... so here it is.

My Enzo.
The hardest thing that has happened to me since my last post was that Enzo died in my arms while Sidney cradled his face and stroked his head and I will never be the same. We had to put him down because what the vets thought was a spinal stroke or a slipped disc appeared to be a terribly aggressive form of cancer called a Hemangiosarcoma.

By the end of April, Enzo was able to trot again up to a 1/2 mile non-stop at a time. This was amazing progress. He was fighting back! I was getting more hopeful that he was healing.  His stride wasn't great so I bought him a sneaker to protect his toenails from dragging.  He was happy.  I was happy.

It had been months of caring for him when he was completely immobilized and now he could go 1/2 mile on his own. This was a huge improvement in quality of life. But then he had a setback and started to look more uncomfortable. A setback, we were told, meant that it was not a spinal stroke. It was most likely a slipped disc and he could possibly get this fixed. His cardiologist cleared him to have spinal surgery. He was scheduled for an MRI and surgery in early May. But instead of spending an overnight in the hospital, he was kept for 4 days while a team of vets ran a series of test trying to figure out why his symptoms made no sense to them.  Why could he walk sometimes? Why did he have a feeling when he should not.  They found a mass and said they could possibly get to it and remove it. We asked them to please try. But when they operated they discovered he had no mass at all. He has the remains of a hemorrhage but they could not figure out where it came from.  They did see another mass that they could not reach unless they broke his pelvis, which was not happening. They could not even reach it to biopsy it.  However based upon what they did not, they suspected only one problem, a type of highly aggressive and untreatable cancer that ofter results in hemorrhaging called Hemangiosarcoma.  The fact that he hemorrhaged and did not die at that time is a testament to Enzo's Strength and Will to fight through anything.

After the operation, we brought Enzo home and we were told that we could wait a few weeks and then put him through more exploratory surgeries to see if they could get a conclusive diagnosis by trying to biopsy the mass they could not reach during surgery by going in a different way.  If it was Hemangiosarcoma, at this stage there would be no cure. Chemotherapy could be a possible option but it would not heal him if it did anything at all. However, Chemo was not an option because they did not have a conclusive diagnosis. But because the mass was inoperable, we could expect him to experience increasing pain and a potential hemorrhage again at any time.

We took him home and loved him more than I thought I could ever possibly love anyone or anything in my entire life for only a few days. 

And then my heart exploded when it was time to say goodbye. Once the pain medication stopped keeping Enzo comfortable and happy, we knew we had to let him go on May 11th.

Holding him in my arms while we said goodbye was by far the hardest thing I have ever done in my entire life and I will never be the same.  The reality is we had only a few days with him from his cancer diagnosis to the end of his life and it was simply not enough time to process anything.  What made it so much worse for us was that we sent him to the vet with very high hopes that spinal surgery would help him, only to find out that things were much much worse and incredibly aggressive. 

Yet through it all, my boy Enzo never showed us that he was fighting for his life. He improved. He was trotting up to 1/2 mile the week before. He was happy and he loved his life. He fought so hard. He is my inspiration.  He will always be.

I shared this post on FB that felt like a Funeral for Enzo on 5/12 here.  This helped me.

Since Enzo's passing, he is still everywhere. An old man walks past our house now.  We stopped to talk with him one day when he ran up to see our dogs saying "I just want to say Hi to the dogs!" Then he introduced himself "My name is Enzo," he said.  We see him now almost every day.

The book "The Art of Racing in the Rain" has been turned in to a movie. This is a story about a dog's recounting of his life with his person on his last day. The dog's name is Enzo. When I first met Enzo, I was listening to the audiobook and named him after this very dog. The trailer for this movie runs repeatedly, breaking my heart each and every time. 

Not everyone will share an incredibly special bond with their dog, although I would guess most people truly do. Dogs make sure of this. They are the best creatures on this planet. And every once in a while there is a really special dog that changes your world and Enzo did that for me. I am so blessed to have loved him. 


My Health:
Since my last post, I had another ACell Regenerative Medicine application to the open fistula tracts in my lower GI.  For those following this post because they have a fistula and are terrified please know that I have a very high, complex, horseshoe-shaped, trans-sphincteric multiple tract fistula infection.  I am not sure if it gets much more challenging than this. Hopefully, yours is not as complex.

During my last surgery, the surgeon has said if he could actually reach where my abscess was located, he would try to repair me from the inside with what is called a Flap surgery.

When I woke up from surgery, I had learned that my abscess is so deep (high) that he could not reach it to fix it internally. While exploring, he also discovered the tract had branched out, spreading to make a new infected tract that needed to be closed as well. It is not a great sign that he could not reach the abscess site to close it.

He had to make a very large opening in my butt cheek (maybe the size of a half-dollar) and had to use the existing fistula track apply the ACell matrix.  He cannot cut me or I will lose bowel control for life. This surgery has not been comfortable, but I am very proud of how I have been managing.

At one point during a run with Sidney, he turned to me and said "You are the strongest sick person I have ever met" and that, right there, was the best thing anyone has ever said to me. We aren't weak OR strong... we can be both. I am both right now. 

After my surgery, I could not move for 5 days. I needed to take the prescription pain meds to tolerate the early days. I took 10 days to rest and then I was back at work. The truth is I really need another week before I really felt well enough to deal with driving, sitting, working, etc without pain meds.  I was in a lot of discomfort for 17 days but then I felt better.

I saw my surgeon on 7/22 and he confirmed what I already knew, the fistula tracts are not fully healed. The ACell did not work, at least not by 7/22.  He said to give it 3 more weeks to see what happens (but truly if it was going to work, it should have work quickly).  Then we will move on to another MRI and try to assess what surgery I can have next.  I already know he can't reach the internal gland that abscessed.  I don't know what else he can try to do for me, but with every more complicated surgery comes increased risk that I will be in a colostomy bag so we are taking things slow.

He did say I am not infected at this time and my surgical site looks like it is healing well.  He told me to live my life and if I suddenly have signs of a new infection to call him right away. Because my version of this condition is very complicated, too deep to reach, and has multiple branches, at any time I can become infected and possibly septic again.  If I have a fever or pain, I need to stop everything and get treatment. If I have no symptoms I can do what I want, including running as long as I can tolerate it. 

Marathon Training, Running for Enzo... Running WITH Enzo still: 
I have decided that "waiting until I am better" is not working for me anymore.  This illness began in October.  I waited for months, losing almost everything I love about my life during that time.  I am not going to do that anymore.

So over the last month, I have begun training again. If I had to pick one workout to help me get faster and to build endurance as quickly as possible, it is the "Run/Walk."  I still have a large opening from my surgery.  Initially, I was packing that wound with antibiotics covered cotton then covering with a plastic adhesive covering with a gauze pad.  With that in place, I could run as far as I could tolerate.  Right now I don't need to pack the wound anymore. I can just cover it with gauze and plastic adhesive and go on my way.

I am now up to 14-mile long runs and my fastest and most recent 12-mile run was at 9:25 pace walking .10M each mile. I am getting stronger. I am getting faster.  I am not giving up. 

I have a Long Run playlist. Somehow the song "Fix You" by Coldplay ended up saved to my Long Run playlist. "Fix You" was the song I played 2-3 times per day when I did PT exercises with Enzo to try to help him heal his spinal injury (when we thought it was just that). With my playlist on shuffle, "Fix You" will randomly play.  The last few times it came on just as I reached the park where Enzo and I trained most often.  I can't help but feel like Enzo is now trying to fix me.  I can believe anything I want to believe. I choose this.

I can't explain how much I miss having his leash tethered to my wrist when I run. I walk Lapis and Piper with a waist belt.  No one is tethered to my wrist anymore.  Enzo was always a crazy dog and not the type that could be off-leash ever. He just wanted to run. He wanted to run fast and he wanted to run far. He didn't give a crap about what anyone else thought he should do. He was his own boss. That is what you get from living on the street for who knows how long.  He had a lot of issues, but he was happiest when he ran.  He had the ability to run over 50 miles per week with me and could have done more if I didn't get tired.

So now I well enough right now to train again. And I am not just doing this for me. I am carrying my boy Enzo with me in my heart wherever I go. I am letting him do what he always loved to do. 

If I make it through this cycle of marathon training, it is only because of Enzo. I run for him now. I refuse to sit back and wait when I can be out there Fighting like Enzo did every day.  Enzo is the inspiration for everything that happens to me now in my life. Where I go, he goes and I want to take him everywhere. 

Enzo is my Co-pilot. 
He is my inspiration. 
He never gave up. 
I can't either. 
Not now. 

#EnzoIsMyCoPilot, #CreatingMomentum!, #NeverGiveUp

Wednesday, April 10, 2019

4/10/19 Starting over again, after a really hard 4 months.

A lot has happened since December. I am exhausted, truly. But things are getting better in every way.

My Husband and our new dog: In January, my husband Sidney was deployed to Afghanistan. He just got home. It was long 3.5 months.  The most beautiful part of his deployment was him finding Lapis. 
While deployed Sidney befriended a puppy. He found out that in his area of Afghanistan, the culture is not dog-friendly. If this "little" girl was not found a home, she would be either euthanized (most likely shot) or released to the wild (off-base) where she would likely not survive the harm from people or other animals.
  
Lapis  at 3 months old
By February 10, we had coordinated with and help to fundraise for Puppy Rescue Mission to have her shipped to a shelter in Kabul, quarantined, vaccinated, medically cleared, and transported home to us to join our family.  She just got here too.   

Sidney named her Lapis after the blue gemstone found in the mountains of Afghanistan. Sid wanted her to have a name that represented her place of birth but he wanted it to be connected to something beautiful, not the base or the desert. She appears to be all or part "Afghan Kuchi (Shepherd)" which are dogs that follow nomad herders around protecting them from wolves and thieves. I took Lapis for a mile of jogging yesterday and it turns out she LOVES to run, at least right now. (Vet already said I can start running with her)

My Health: On 2/5, I changed surgeons. My old Colorectal surgeon gave me one option for surgery that had a low success rate and too high a risk of incontinence. 


I found a doctor in NYC from Columbia. He provided me with a second opinion about my fistula.  So far this tunnel of infection of my lower GI tract threatened to leave me incontinent once a surgeon would attempt to close the hole. Because this hole was left open,  I was living on months of antibiotics with drains in place to prevent me from becoming septic again.  This new doc explained that he wanted to try a minimally invasive new procedure that used ACell, regenerative medicine, to stimulate my body to heal itself.  When the Acell matrix comes into contact with injured tissue, it triggers the cells to turn back on and regrow.  This has a good chance of repairing me completely or in part. If only partially successful, it should make my situation so much better so that if I did need another operation, that next operation would be simple not leave me incontinent.  

I was able to find some promising research on this procedure.  It seemed hopeful and involved no cutting, minimal pain, and an uncomplicated and speedy recovery process. https://www.ncbi.nlm.nih.gov/pubmed/25975335



Enzo needed 6 weeks of crate rest 
to help initial his healing.
Enzo (my boy, my family): On 2/18 Enzo had what was most likely a spinal stroke and became completely paralyzed
in his back left leg.  While on a walk, not even .5 miles into the walk, he suffered some incident that caused him to lose functioning over 12 hours and eventually he could no longer walk.  I think knowing Enzo is an older dog, both Sid and I were both afraid something might happen to him while Sid is deployed and it did.  

It was the most heart-breaking situation I have even been in with a pet, watching them suffer from sudden immobility.  I learned how to do PT for him, I took him to 5 vet appointments for help, including a neurologist.  For the first 9 days, life was miserable and recovery seemed hopeless. By day 11, Enzo was starting to get around better and used his leg more. All I wanted was for Enzo to be basically OK by the time Sid returned.  With a lot of work, Enzo was able to walk a little by the time Sid saw him again. This was good but not great. Enzo may never run again. He may never fully regain the use of his left back leg.  But, we are going to keep trying to rehab him to the best of our collective ability.

My Surgery: On 3/8, I had my ACell surgery. I haven’t run much since. I was told to try to move very little for the first 5 days just to give the matrix the best chance to trigger regeneration. I could not lift anything. I was not supposed to be on my feet much.  With a paralyzed dog at home who needs to be carried everywhere, I was terrified I would not be able to care for myself or for Enzo well at that same time. But Enzo rose to the occasion. The day of my surgery, Enzo started to use the dog ramp and dog door on his own. I did not have to lift him at all during my recovery. After 5 days, I was told to exercise lightly at first and to take things easy until I saw my surgeon again for my 4-week follow up.  Today was that day. 


It has been so exhausting trying to take care of Enzo and myself post-surgery while attending to Piper and the birds' needs without any paid time off to use and without Sidney around to help me. But it all got done and everyone made it.  My training fell off my plate which was likely the best thing I could have done, since training could have messed up my healing process. 

Sidney's Return and then Lapis's arrival:  On March 27, Sidney finally returned from Afghanistan. It was nice to have him back. We had two full days together before we had to drive to DC from NJ to pick up Lapis on 3/30.  We quarantined Lapis further from our other dogs, which meant Sid and I taking turns sleeping on an air mattress with her until the vet checked her.  She did come back positive for Giardia and all dogs got 7 days of meds twice per day.  I felt like a nurse for the last week. LOL.  They are finally all healthy but they all need time to become friends.

Today, 4/10, I was able to see my surgeon to find out if I needed another surgery.  I knew I wasn’t 100% healed but I was trying to not get my hopes up either.  I was afraid he would tell me that I needed a new surgery but instead, he told me that the ACell matrix seems to have worked. He reported that he can’t see any evidence that I have a fistula anymore, but I am not 100% healed at that time. I was told to go live my life and come back to see him either (1) only if I have any pain suggesting infection, or (2) if I want peace of mind, I could see him again in 4 weeks.  I opted to return in 4 weeks. 

ACell is  an ECM that trigger regeneration of tissue
  
So now I am ready to start over. There is still a lot of work to do but we are on the upswing. 

First, I have to train all the dogs to get along safely. I have to train Lapis to run more than a mile with me. I have to train Piper to not be fearful of this giant puppy (40 lbs at 5 months old). 

I have to keep working with Enzo to see if I can get him walking better on his bad leg. I worry about him. 

And now I have to wait 4 more weeks to find out if this nightmare is over while praying I do not become septic again. I can start lifting again and I can start running again. For now, I feel like I have experienced a small miracle with this ACell regenerative treatment.

I feel both happy and terrified at the same time.  I get to move on with my life while hoping nothing bad happens along the way.  The more time that passes, the less fear I will have about this. So for now, I get to start training to rebuild my fitness again. <3 


And for the record, this is Lapis at 5 months only 2 months after that first photo was taken. She is going to be huge!