Wednesday, September 21, 2016

The Jumbled Mess That We Call Life

I signed a DNR  (do not resuscitate) order for my dog, Molly, yesterday...

Life has gotten so messy and complicated so quick, it's a bit staggering. One minute we're having the time of our lives in Ireland and Northern Ireland and the next, the shit is hitting the fan. It's almost like the world is playing a cruel joke on us by saying, 'Here, go have the time of your lives, but be prepared because I am going to chew you up and spit you out when you get home!"

The reality is though, the world (or God) isn't playing a cruel joke on us, that's just life: highs, lows, and everything in between, all mixed up into this jumbled mess that one minute has you laughing and the next, has you crying.

As previously mentioned, shortly after we returned home, we got some disturbing news about a member of our family. And then we got hit with some unexpected financial expenses. Can someone please tell me why dental work and car tires cost SO much?? But, my husband and I still had our heads above water.

For me, my head started rapidly dropping below water when I went to my orthopedic appointment yesterday morning and I was told there are no other options to treat a severe problem (an osteochondral defect...if you have experience with this, e-mail me!) with my left ankle, except for surgery...a surgery that has a recovery period of up to six months-three months before I can even work or do anything resembling normal day-to-day physical activity.

I signed a DNR order for my dog, Molly, yesterday...

Surgery is a nightmare for me. I had my gallbladder out last year and I cannot believe I even have to consider the thought of going through that again. To start with, I will have to come off the low-dose naltrexone I take for my Sjögren's symptoms because it cannot be mixed with narcotics. And we all know I am definitely going to need narcotics, at least short term. Secondly, there is my previous history of blood clots. I am guessing that a pending surgery will require discussion with my hematologist, especially since I will be in a cast post-op and my blood clot risk will be high. And that means blood thinners, frequent blood work, and a lot of worry for me.

So I am doing what every patient who is trying to avoid surgery is doing: postponing scheduling the surgery until I can get a second opinion. Hopefully that will come soon since walking is quite difficult at the moment.

I signed a DNR order for my dog, Molly, yesterday...

This morning's doctor appointment had me subsequently going to the hospital for multiple x-rays of my back. Right after we arrived in Ireland, I started getting episodes of numbness on one side of my upper back. That was in addition to the pain I've been getting in my tailbone and sacrum for months now. Pain that the doctor keeps telling me will eventually go away. We went back and forth about cortisone shots this morning. She wants me to get more shots, this time under fluoroscopy, so we can get deeper into the small areas around my tailbone. I want an MRI to see if we can find out if something scary is going on in there. She says no. But, she does agree to x-ray the part of my back having numbness and sends me off to physical therapy to try and straighten my crooked sacrum out.

I don't have the energy right now for physical therapy.
But, I'll go because I think it might help.

So many decisions to make.
So many complicated conversations to have.

Does anybody appreciate how hard it is to stay focused in these long medical conversations when one is feeling overwhelmed? I know some of you certainly can.

But see, I can typically handle all this medical drama. And I can handle it pretty well, with a lot of grace. I am warrioresque like that.

I'm out of grace this week.


Because I had to sign a DNR order for my dog, Molly, yesterday...

Two nights ago I was sitting on the couch with my husband watching TV. Molly came over, put her head on the couch, and looked at me in a way I haven't seen before. A look that said, "something is wrong with me."

She's fifteen years old. I was told about five years ago that she has a leaky heart valve, tricuspid valve I think it is. My husband and I both knew that she hasn't been feeling so hot recently. She gets more fatigued on her walks and the heat/humidity we have had lately here in New England has been tough on her. She was panting more than usual. But overall, she looked content and I had made a promise to her, and myself, that I would not go to extraordinary measures to keep her alive at this point.

But what exactly does "extraordinary" even mean??

Yesterday morning I woke up and noticed my husband and Molly weren't in the bedroom. I got up and my husband, Chuck, came upstairs with Molly. He had taken her down to our spare bedroom during the night to sleep because she was breathing too heavily and he was up most of the night with her. However it was one of those things where it came and went.

Because I had that doctor's appointment about my ankle I could not miss and he had to go to work, he took her to work with him. She initially looked better, but then every time he took her outside, she would be short of breath and excessively panting again.

I met him at his work after my appointment and called the vet. She was in surgery all day and I was told to bring her in the next morning or if I thought she couldn't wait, to take her to the E.R.

And that was where I spent the rest of my day.

It was hard, really hard.

They took her right in and checked her out. I got to fill out forms while I waited. I took my forms, sat down, and saw the form where I have to decide if needed, if I wanted her to have CPR. But at least they respectfully put the price of the CPR in parentheses next to the word "resuscitate." There are different prices depending on how much life support you want them to perform.

You have to be kidding me.

And then the tears came. I knew we were going to face this eventually, but no matter how much I have tried to mentally and emotionally prepare myself, my heart started to slowly shatter into little pieces. A kind looking woman handed me tissues. Her gentle act of kindness was enough to help me pull myself together long enough to check the box for DNR.

Breath, Chris, breathe.

You promised you wouldn't let her suffer or keep her alive just for your own sake.

Have I mentioned Molly has been my constant companion for twelve years and one of the two loves of my life?

About an hour later I got an update. The doctor thought her breathing was stable. She didn't see the breathing distress that my husband and I had witnessed. I told her it comes and goes. She tells me her oxygen levels and vital signs are good. Can she have my permission to start an IV, just in case? I give it to her. She also asks for permission to do a chest x-ray and some blood work. I give her that as well.

How much is too much?

When do we decide enough is enough?

I sit there and decide we need to know what is going on and what we are facing. Maybe this is simply a case of pneumonia that can be adequately treated with antibiotics. Yes, let's do the chest x-ray and labs...see what happens. Maybe even a cardiologist to further figure out what exactly is wrong so we can make her as comfortable as possible with medications. But it's OK I tell myself, it won't come to that. The doctor said her physical exam was unremarkable.

It comes to that.

Three hours later, I am brought back in. I am shown the x-rays. Her heart is enlarged, very enlarged. Possible congestive heart failure is mentioned. There are shady areas on her lungs, not tumors, but possibly pulmonary hypertension. I'm a nurse. I know what terms are bad and which ones still contain a shred of hope. To add insult to injury, the doctor took a quick peek at her heart valves. They don't look none too good either, but I am told that they only way to know for sure is to see a cardiologist and have an echocardiogram done.

How much is too much?

This doctor is amazing. She explains everything in a way that I think should be a model for every doctor and vet in this country. She is not overwhelmed with my questions. She is patient. And she is kind. She asks me about starting Molly on two different medications for her heart and I agree. That was pretty much the point of me bringing her in, to make her comfortable.

I run through my checklist in my head. I developed this checklist sometime last year when I saw how much Molly was slowing down. It's a guide of sorts to help me (us) determine when we are at the endpoint...

* Is she in pain or distress? No to the pain and the heart meds should help with the breathing distress.
* Is she eating? Yes, very well.
* Can she walk well? Yes.
* Does she enjoy something in her life that she's always done? Yes, playing with her babies, going for car rides and to the park, spending time with us, cuddling.
* Can we afford her vet bills? Yes, despite the fact they are a killer and we will have to re-prioritize some things.

So, a plan is developed and we are homeward bound, both of us much more fragile than when we arrived. As I am driving home I think about one of the owners and his dog who were in the waiting room with me. I am pretty good at reading people and the read on this man was that this dog was everything, and everyone, to him. You could see it in the way he handled him. There are infants that I haven't seen handled so gently and talked to so lovingly. If I couldn't see and was in another environment, I would have thought it was a baby he was talking to.

I overheard the man talking to another woman. I couldn't believe the amount of serious diagnoses the poor dog had. He sees NINE different specialists. Then I looked over at the dog and I actually had to watch for his breathing because otherwise you couldn't tell he was alive. He was so listless and it appeared to me, he was barely existing.

Certainly not my place to judge, but it made me realize that was not the condition I wanted Molly to live in. She sees a cardiologist Friday and I am hoping she does the echocardiogram the same day so we can get a handle on knowing what is going on and so we can have conversation and make some decisions what how far we want to take her and at what point we will say enough is enough.

That is life, one big jumbled mess. You never know what the next day, or even hour, is going to bring you. It may bring you to the most beautiful mountains and valleys of Ireland. It may bring you to the heart wrenching decision of checking off that DNR box. Sometimes, you just have to hang on tight and pray your way through the day. Or, stay present in the moment you are in and remember to do the next right thing.

Life can hit us in a way that requires us to weave through it one important decision at a moment at a time.

As I finish this up, I realize that after  a ten hour day, I am done for today. There is nothing else so urgent that it cannot be looked at tomorrow. So I am doing my next right thing for myself and curling up on the makeshift dog bed in the living room with Molly. And, I am going to hang on tight.


  1. Dear Christine,
    I love your writing and your pictures too. I have GCA , dx 1.5 years ago, final leg of prednisone and just started naltrexone ld. The highs and lows of life, incredible. I had two Mollys, well 2 jack russel terriers, Ebenezer and Dillon. Ebenezer was a gift from my husband on Christmas Eve- and he was my little pal. He had a heart murmur and , leaky valve and an enlarged heart. He was 15 when I had to make that decision. I am a pharmacist ,so like you I know the outcome and the med routine and I did not want to make him suffer. A month before I had to say good bye to Ebby I had to say goodbye to Dillon, he was also 15 and blind, and terrible spinal arthritis and could not get up anymore with out assistance, in pain. It was a very very hard few months for my husband and myself, they were our kids. The amazing souls of our pets and their intuitive nature was evident on the day We said goodbye to Ebby. I had purchased a horse, 15 yr old show horse whose young owner had been killed in a car accident. The father of the young girl who was killed had enjoyed raising horses and was showing them, and when she was killed, he decided to sell the horse that they had raised together. My new horse arrived from Florida to NJ and we went to meet him for the first time hours after saying goodbye to Ebby. So emotionally we were drained. Horses are and have been my therapy and a passion. I walked into his stall, he turned to me, approached me and put his head on my shoulder , as if we were old friends and he knew exactly what I needed. I knew we were going to be life buddies. He will be 23 in March 2017, and he suffers from arthritis, but I have had a number of procedures performed to keep him sound and he is as spirited as a 3 yr old. The responsibility we have committed to our 4 legged family members is I believe a gift that we are given, a privilige. Molly will tell you when she is ready and you will totally know. My prayers and warm hugs go out to you and your husband. I have been there and will be there again, and as painful as it is now, the joy and love that Molly has given you both is too great to quantify. Thank you for sharing and congratulations on your new book. Thank you