One Days

Scott

When we started this chapter in Mom's Breast Cancer journey everyone told me that you have to take things one day at a time. I had heard this before many times... but now that we're in the middle of all of this, we now know the absolute truth of that statement.

Every day in mom's walk with this disease is a new and different day. And it's extremely difficult to not get caught up in the planning for what could happen, to ask questions about how long does she have, what will tomorrow bring? etc. etc. The more we get caught up in that, the more anxiety and stress overwhelms us.

It's been a while since mom has had any significant pain, which for someone in this stage of cancer is pretty remarkable. It's certainly something that we are very thankful for. Being pretty much bed-ridden, has left mom being occasionally uncomfortable, that's really all the pain that she's experienced. Prior to her surgery in December, she was in quite a lot of pain from a bowel obstruction caused by diffused gastric cancer (Breast Cancer in the abdomen). Her only pain through this process has really only been when she's experienced an obstruction.

So when she started having some pain yesterday, it's really hard to not immediately to start to worry that it's another obstruction... and at this point another obstruction would be a very bad thing. The truth is that there are several things that could be causing her pain.

And that's the day by day.

We wait for a moment to see what is going on and then take the next step.

The next step has often been OK.
It's natural to worry that the next step may not, but equally important to remember that it may be OK, it's often OK and even if it's not, we can get through it together.

Working together with each other

Scott

I started this post when I was in PA visiting mom last weekend in the hospital, but never finished the post.

As we wait for dad & Amy (from the train) to arrive at Butler hospital, mom is resting as comfortably as she can and I get to reflect on this day and this trip. I go home tomorrow morning. 

This morning we had a bit of a scare thanks to an ambitious urologist. For the past year or so mom's had a slightly swollen Kidney. It's something her urologist has kept an eye on but this episode in the hospital brought it to the forefront. In mom's state the nurses are charting and tracking everything that comes out of her. Blood infections, or Sepsis, are no joke. 

So we started to do what you have to do in these situations and be the voice that connects all of the doctors dealing with your care together. We called the oncologists office, talked to the nurses and then they brought in the urologist. Moms oncologist office really stepped up and spearheaded contacting everyone and sharing mom's details so together we all were able to determine a course of action. In this case, that is no action. 

When we all worked together we were not only able to see mom's situation better, but she felt strong enough to have her opinion heard and supported. But it took a lot of work. 

I wish our system (or this system here) wasn't so disconnected. Anyone's care should be a joint effort. Medical records shouldn't have to be discovered by a new specialist. A new nurse in hospital should never have to ask YOU why you're there.

The flipside

Scott

I started writing this post on Monday of this week (2/15) and kept stopping because I had something else to do or a place to go, mostly because I was trying really hard to get a series of things taken care of to take an extended weekend to spend time with mom & dad.

It's late on Thursday night and I'm in PA and have the time to make a proper post.

This post is going to be a little different than past blogs. I'm going to take a moment to talk about mom's cancer journey for me.

But FIRST... and update.

Tuesday mom had blood drawn (standard) and the tests revealed that her electrolytes were a mess and she had a couple of infections, so her doctors wanted her to go to the hospital. Luckily for dad, my uncle was there and able to help him get mom out of the house and to the ER. Tonight I'm blogging from her bedside in the hospital.

All things considered, she's doing well.

Unlike last week, she is a little stronger and has been able to stand and scootch (scooch?) from the bed to a chair. This is a really good thing. Her nurse informed us late tonight that her levels have been improving, so it's becoming more reasonable to believe that they might release her tomorrow. We'll just have to wait and see.

Now for me...

Of course it's hard to have a loved one go through cancer. That's pretty much a given.
Cancer comes along and F's up your life no matter who you are and what your relationship is to it...

For our family, this experience has flipped our lives upside down.

Growing up, we were pretty poor. And so we learned from experience that family came second to work. It's something my parents instilled in Amy and I as we left home. No matter what, don't jeopardize your source of income. Visit when you have time off from work, go back after your visit when you need to, even if that means the visit is super short. Family always came second to work, career and other obligations.

So now... it's flipped. Mom now has to be our priority.

That makes the situation even harder for my sister and I. We both have this intense work ethic drilled into us. We've always been work-horses, putting a lot of pride in our work, our accomplishments and our various projects. 

For me, and I know there are many reasons for this, I am always pouring myself into things and projects (this for example). As such, I've poured myself into creative endeavors like improv, teaching, and directing; starting my own freelance PR company; pushing the limits of my full time job into projects that consume my time far beyond the time I have to give; and of course into my relationship with Ian, a gift I treasure and one that has taught me value in enjoying my downtime.

For most of my life, my folks have celebrated those things with me. I have always felt their pride in my accomplishments. I still feel it, even as mom struggles with her health. And that makes it all the more difficult to push the hold button on things, to pull my hand back from the miriad of balls I'm juggling so that I can enjoy these times with mom and help Dad, and Amy when they need it.

But these are the times fables are made of. These are the moments pastors preach about. These are the stories our elders tell of misplaced priorities - holding onto things that pass away instead of people and memories we carry with us forever.  

And so we come home.

We find a way to make things work, to delegate obligations, to rely on others who offer to help, and to focus on what's important, on time together. We share love, give love and receive love and pray for as many days as the Good Lord will allow us to celebrate our lives together.

I hope that through this journey I'll retain some of that... that I'll be more engaged with those I love, that I'll take time for family and friends in need, and that I'll love a little more.

Several steps forward and a giant slide back

(Scott)

After my last post, mom continued to get better. She followed the doctors orders and it seemed like things were doing well. She was at home with dad, walking and getting stronger. They even went to church and went out to eat after doctors appointments. Occasionally they'd have some struggles with the ostomy bag, but it seems like that's becoming rather routine for them. Things were generally looking up.

And then they weren't.

Dad called us January 26th to let us know that he had to take mom to the emergency room. The visiting nurse had come by that day and taken mom's blood. She had been feeling tired so I don't think it was a big surprise that when they ran it at the hospital it showed that she was severely dehydrated. It was a struggle for dad to get her down the steps, into the car and to the hospital. She was mentally blurry and very very week.

She was ULTRA dehydrated.

In just a few days she went from being on the road to a good recovery to being unable to sit up in a hospital bed by herself. In the hospital they began the same kind of regiment that had worked before. Lots of IV fluids, lots of water and food. Lots of rest.  And things were getting better.

Ian and I had planned to come visit Mom & Dad that weekend to repaint the living room, dining room and hallway. Something mom had asked us to do and we were excited to make happen.  Being stuck in the house recovering from cancer sucks, so anything to brighten that space would be great. But... with mom still in the hospital we all decided it would be best to postpone the painting.

On Tuesday mom was well enough and mentally back enough to start rehab. They were scheduled to move her to the transitional unit at the hospital, so Dad's call later that day with bad news was another surprise.

Dehydration led to immobility. Being immobile led to blood clots in mom's leg.  Blood Clots in the legs are bad enough but in this circumstance they are emergency bad.  The doctors installed a filter to prevent the clots from causing more harm by breaking free.  Within 24 hours it was clear that blood thinners and clot solvents (?) weren't enough and the doctors wanted to do an angiograph... a sort of roto-rooter of the arteries and veins in mom's lower leg.

After much persuading, mom agreed to have the procedure done and with a stent, it successfully restored blood flow to her foot.

That's the easy part of this update.

Here's the big slide back...
After mom's deep resistance to the simple Angiograph, she had a conversation with her oncologist.

Remember in my last post that mom had two weeks to get better?

Two weeks have well come and gone and mom is still very weak. Upon my parents' insistence, they released her from the hospital so that she can be more comfortable at home.

I drove to PA this weekend to be with mom and dad. Amy will be in by train tonight. I have to head back to Michigan tomorrow. This was just a short trip for me.

Nurses are now coming to the house every morning to administer home IV's so that mom can keep hydrated. The list of medicines for her to keep nutrients in her system has grown.

Mom is still not drinking enough water... the phrase You can lead a horse to water... applies here.

This is a struggle, a real struggle.

She is very weak. She cannot stand, she is able to walk with a walker - but not well.

It seems like cancer is slowly taking her away, bit by bit and I feel helpless, we feel helpless. When the cancer is basically un-treatable you just have to treat the effects. At this point we're full-on into Palliative care for mom. The goal is to treat the effects that cancer has on her and help her get strong.

We're hoping and praying that she can get strong enough to make a last chance attempt to treat the actual cancer through Chemotherapy or something else. But the longer she goes without getting to that point, the farther that hope seems.

Some family and friends have helped mom and dad with things like bringing meals over, stopping by to say hello, and visiting when mom's feeling well. All these things are answers to prayers and helpful for them. With Amy & I living so far away, we can't express how much we appreciate this from our family and friends.

And prayers, thoughts, cards and flowers are always helpful.
And with all of that we'll see how she gets through this period.


Tonight I'm reminded that while cancer is indiscriminate in who it attacks, when and how. Faith leads me to believe that things like this have a greater purpose, a lesson, an experience, a need to learn, to care, to be. We are fortunate when we can see that purpose in the moment and must be patient when we cannot.