Adrian

Hello all,

A quick update on Mom:

Hospice has been going really well and Mom seems to be really benefitting from the many services and programs.

The first couple of weeks were hard; the chemo still seemed to wreaking havoc in her body, more than ever. The physical and emotional impact was stronger than I think any of us anticipated.

But the last week to two weeks has actually been really good, relatively speaking. Perhaps the lingering effects of chemo have passed; we don’t know. Obviously things are not like they were before before, but Mom is stronger and eating regularly. Some nights are worse than others with pain and swelling, but most nights the past two weeks have been fine.

Mom’s sisters have been amazing and spending day and night with Mom, and my sisters and I have been trying to make sure at least one of us is there everyday (sometimes all 3). My younger sister Alia has been there basically everyday for hours and hours and has been working directly with hospice and that has been amazing.

It is a liminal time right now; a couple of weeks ago we were preparing for the worst, and today Mom is baking pies with some of her grandkids and cheering for the Phillies and Eagles and planning Sunday dinners.

It’s hard to know how to feel.

We are just: one day at a time.

Hello fam and friends.

So, the past week has been hard. After meeting with Mom’s oncologist on 9/7, we have been spending a lot of energy getting Mom’s affairs in order.

Mom started on hospice this week, and they have been wonderful. So kind, so supportive, so experienced in helping with this stage of the process. They come out to visit multiple days a week, and have so many services mom is excited to enjoy — reiki, music therapy, counseling — as well as making managing the prescriptions and the DME (Durable Medical Equipment — new acronym! yay.) so easy. It has been a whirlwind of activity, but they don’t dawdle, that is for sure. Stuff happens in hours. Mention a drug, it appears via FedEx the next day. Amazing.

We’ve done the hard work of finalizing Mom’s Will and funeral directives, and today met with the people from the funeral home so Mom could get questions answered. Mom has several things that she cares about in this process, and some that she does not care about, but believe me, the things she wants, we will make sure she has.

I think talking about these things in this post is important, and so does Mom. As always, since the beginning, she asked me to share all the details I could. I believe Mom feels if someone else can gain strength down the road from witnessing her story, that would be great. If you know my Mom at all, you know, no matter what, if she can help you, she wants to help you.

It has been a hard week, no doubt.

Mom is very tired these days, and some days are better than others, which is to be expected.

As everyone keeps reminding us: One day at a time.

“The scans… they are not very good at all.”

That’s what our oncologist told us this morning, in his nevertheless cheerful-sounding Irish accent. He has a slight Irish accent… he’s been on this side of the Atlantic for a while.

We knew this already, as the results were posted very quickly on Friday after the scan. While we were committed to waiting until we spoke with Mom’s oncologist before we jumped to any conclusions, it is easy enough to read that the tumor did not shrink and actually grew a very small bit.

It was a very emotional and low weekend. We all had to come to terms with where we are.

On top of that, the ct scan revealed an increased concern about a possible growth in Mom’s liver.

So, he ordered an MRI for Mom and wants to meet again after the MRI to determine what, if anything, is going on with the liver. Additionally, he will review some genetic testing Mom had done to determine if there are any additional treatment options to consider.

“When we started this, the goal was to shrink the tumor and then go for surgery… that is not happening now,” he said.

The MRI is scheduled for next week, and we have an appt to meet with the oncologist again the week after that.

He promised to review all possible treatment options, from any trials Mom might qualify for, to hospice. He said he’d explain what those treatments would look like, what the expectations for each would be. He stressed that the treatment plan was Mom’s decision, and that we would do whatever Mom wanted to do.

His major concern at this point is Mom’s quality of life, and is not “going to twist your arm” to pursue any more chemo or other treatments that are destroying Mom’s quality of life with minimal or no benefit.

He wants Mom to ramp up her exercise and food intake. He actually prescribed Mom find ways to increase her salt, fat, and carbohydrates.

He explained that a pancreatic tumor releases specific proteins that actually cause a patient to experience depression, loss of appetite, and low energy.

I had no idea that tumors did that; seems so sneaky and unfair to not only be directly attacking your body, but to also release little protein-bombs that cause your body to shut down in ways to help the tumor thrive.

You are a jerk, tumor!

He expects Mom’s energy to continue to grow this week as the effects of the last chemo wear off, and wants us to focus on returning to all the normal things we can — walks, visiting, baking, family dinners, etc.

So, that is where we are.

We are back from chemo today.

Today was the completion of round 2, the last and 6th session for now; no more chemo for at least two weeks.

Next week is a week off from chemo, though mom has several other appointments, including the ct scan to measure if the tumor shrank.

Yesterdays labs included some encouraging news: the CA 19-9 showed a decrease in cancer cells for the first time; up until this week the cells had increased every week. Last week the CA 19-9 slowed significantly and only rose a little, and this week it dropped 20%. It was very encouraging as we were all feeling the burnout.

Two weeks from today we will meet with mom’s oncologist to review all the lab numbers as well as the ct scan, evaluate how much progress has been made, and map out Mom’s options moving forward.

It’s been an emotional roller coaster recently, and now it feels like a moment for all of us to catch our breath.

Thanks for your continued care, support, and prayers.