Update

A Hard Week

September 15, 2022 by Adrian Leave a Comment

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.

Not Very Good at All

August 24, 2022 by Adrian Leave a Comment

“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.

Round Two Complete

August 10, 2022 by Adrian Leave a Comment

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.

An ER Vigil in Atlantic City

June 17, 2022 by Adrian Leave a Comment

After a super fun day shopping in Brigantine, NJ and soaking up some sun on the beach, but felt very ill by late afternoon. She started running a small temperature, which kept climbing.

Mom’s temp spiked this evening to 102 and we took her to hospital in Atlantic City. What follows is a sort of raw account of the night, though it leaves a lot out (like the fight in the hallway outside of our room, the gun shot wound patient who came up and coded, and the absurd nurse we started out with until someone normal came on shift.

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Alia and I are here with her now as they do a full sepsis workup and get the antibiotics and other IVF up and running.

UPDATE 0019: Mom is doing much better on the IVF and antibiotics. Waiting for results from blood work and figure out next steps. If they want to admit mom we’ll want to transfer back to Penn which I guess is an ambulance ride down the AC Expressway. Or maybe they’ll let us go home.

UPDATE 0058: So far everything is coming back where it was; they don’t know where the fever is from. Mom is neg on COVID and flu and RSV. They want to admit so they are reaching out to transfer team to transfer Mom to Penn.

UPDATE 0145: Moms been accepted for transfer at Penn, but there are no beds available. So she’s in line for a bed there; in the meantime they will admit mom here if they can and wait until Penn calls.

UPDATE 0526: Still in the ER room… all night for Alia and I in wooden chairs. Moms temp was normal a few hours ago. Waiting for a room here where mom can wait for a room at Penn. Her ANC and WBC are too low for discharge and so we are stuck in limbo and nobody has any rooms.

UPDATE 1209: Mom is admitted to the AC hospital, though she is still in the ER hold room. Could be worse; it’s a private room with a private bathroom. The doctors today are amazing, and her nurse is wonderful. We tucked mom in after she ate breakfast and got her morning meds and Alia and I went back to the beach house to clean up, rest a little, and go from here. A lot depends on if a bed becomes available at Penn and they transfer her, or it is possible while Mom is at the AC hospital her cultures come back negative, and her ANC rises enough, and she’ll just be discharged from there and join us back at the beach house for a few more days. It’s all out of our hands for now; I have so much more to say but you’ll have to wait for the update post. I’ve been up for 30 hours straight and most of that spent in a torture chair so I’m going to take a nap. L8er

Life is Full of Gems

June 15, 2022 by Adrian Leave a Comment

We met with Dr. O’Dwyer today to review Mom’s CT scan; he’s changing everything. We retreated to the beach to bask in the sun and salt air, and the generosity of a friend.

Early this morning my sisters and I took Mom down to the Abramson Cancer Center to meet with Dr. O’Dwyer and review Mom’s recent CT scan. We recovered from our initial scanxiety shock and went with open minds and open hearts to hear his expert opinion.

Still, we were nervous.

Dr. O’Dwyer is confident and assured and he really had nothing but good things to say. He spent a lot of time talking to Mom directly about her symptoms, and what she is doing about them. He was very adamant that Mom needs to get more protein into her diet and eat more, and is a little concerned about Mom’s weight loss. My sisters and I (and my of our regular visitors) have been beating this drum since March, but, you know, maybe hearing it from *one* more person will get those protein smoothies going again.

After examining Mom, Dr. O’Dwyer turned to the main event: reviewing the scan. To paraphrase, he said:

“It looks like maybe the tumor grew a little bit. Not much, in fact, it is very close to the same size. But we are not doing all of this just for no growth. We want shrinkage. We want to shrink the tumor and get you to a place where we can meet with a surgeon. That was goal in the beginning, and that remains our goal. Right now, we need to re-evaluate, and to re-evaluate, we need to make some changes. So we are going to change from Folfirinox to the other regime we discussed in the beginning: Gemcitabine/Abraxane.”

This regimen has shown a lot of success, especially when used after a patient uses Folfirinox. The Folfirinox is the first choice, but if it is not producing the best results, the standard practice is to shift to Gemcitabine.

This is a totally different regime.

With Folfirinox, we went down to Penn every 2-3 weeks for a 5-hour session, followed by 46-hours of at-home chemo delivered via a pump Mom had to wear with a should strap.

With Gemcitabine, we will go down to Penn every week for a 3-hour session, 3 weeks in a row and then 1 week off. No at-home chemo.

The symptoms we should expect with Gemcitabine are the same Mom experienced with Folfirinox, but perhaps less extreme.

Dr. O’Dwyer wants Mom to do three weeks in a row, take a week off, then three weeks in a row again, and then they will see how the numbers look.

Gemcitabine has to be on a stricter schedule, ideally the same day each week, and no skipping weeks.

So, much of our planning for the next few months just went out the window. OK, we always knew something like this could happen.

Dr. O’Dwyer wanted to start TODAY, while we were there. We had plans to take Mom down to the beach for a few days, and we thought today’s meeting would be about 30-minutes and then we were going to head for the coast.

None of THAT was going to happen like that.

We immediately started scrambling, me hovering over the checkout desk with the scheduler trying to get all of the dates lined up, my sisters feeding me their schedules so I could get the best dates.

It turned out that there was just no room for infusion today, but we could get a chair tomorrow.

So… we packed up and headed for the beach, and we plan to drive Mom back tomorrow for her first chemo on the new regime.

I didn’t get a picture of the inside of the minivan on the ride down, but I was one of seven, including my Mom and Dad, and floor-to-ceiling bags and food and drinks. The Sienna felt heavier than when we go on our cross-country road trips!

We made it.

A good friend is letting us stay at their home in Brigantine, NJ, and it is heaven. Beach-front. Stunning views. Tons of bedrooms. We set Mom and Dad up in the primary bedroom, and we are all jealous.

If you must recuperate from chemo, this is a pretty great bedroom to have.

My wife and three of my kids are here. My younger sister Alia is here with most of her family, and my Dad’s sister Janine and her daughter Molly are down tonight. My older sister, I hope, might swing down for a day or so. Some other people might pop in. It was a last-minute opportunity, so whoever can make it, can make it.

The generosity of our friend to offer us their beach home is incredible. It was so very much just what we all needed. Mom’s diagnosis was in March when it was still cold and rainy and dark.

It has been a long spring!

And even though Dr. O’Dwyer insists we see the gem in the rough, and even though our spirits are high for the new regime, we are all exhausted, and we could have used some miraculous news.

Who knows — there are many cases of people who had little to no impact from the Folfirinox and then had incredible, tremendous results from the Gemcitabine.

Why not Mom?

There are little gems everywhere. There are my Aunts who have been showing up and sitting with Mom for hours and hours. There are friends who surprise us with their generosity. There are stories that inspire and fill us with hope. My Godmother, my Mom’s best friend, seems to know just when to deliver the thing — a well-written text, some amazing snacks, a hug and a long visit, a random Amazon delivery — that we need. There is a full moon and clear night. There is the sea, and the sun, and a beautiful day in a beautiful space.

Tomorrow (Thursday) Alia and I will drive Mom back to Philly for a few hours to begin her new chemo regime.

Tonight, we will watch the moon rise over the ocean and we’ll toast to our good fortune and our good friends and our good family.

Tomorrow is a new day.

CT Scan Results Could be Better, but Could be Worse

June 14, 2022 by Adrian 4 Comments

The raw results from Mom’s CT scan yesterday are posted, and we have a lot of opinions. Tomorrow, we meet with Dr. O’Dwyer to get his expert opinion.

When the results came in overnight, Alia got them immediately; she read that the tumor now “measures 3.2 x 3.8 cm, previously 2.7 x 3.6 cm on 3/24/2022.” So, all of our initial response was based on the understanding that the tumor was growing, and you’d have to conclude that the chemo is not working. We were all understandably upset, even though we had discussed and thought ourselves prepared for this outcome.

However, there are a couple of variables to consider.

First, the original scan on 3/24/2022 had the tumor size at 3.3 x 3.6, not 2.7 x 3.6. If you go by the original numbers, then Mom’s tumor is basically the same size as it was in March. which is a lot better than “growing”. So which numbers are correct? There was some discrepancy at the time between the initial CT scan and what the surgeon observed during the ERCP procedure, but if the numbers are actually about the same, then you have to conclude that the chemo is working, at least a little.

Second, when Mom went to the ER on 4/16/2022, they did a CT scan and measured the tumor at 4.2 x 4.0, which is larger than the initial scan and larger than the latest scan. Mom had only had one session of chemo at this point. If you include these numbers, then Mom’s tumor was growing between 3/24 and 4/16, but then has been shrinking, and you might infer the chemo is starting to work a lot.

3/24 CT Scan

3.3 x 3.6 or 2.7 x 3.6

4/16 CT Scan

4.2 x 4.0

6/13 CT Scan

3.2 x 3.8

However, the hospital that did this CT scan had some typos, or some mistakes, in resulting their scan, so some of us dismiss these numbers completely.

I part I feel like we know for sure was summarized in this text on this part of the report:

Pre-existing lesions: Slight increase in size of select tumor(s). No evidence of substantial tumor enlargement.

Even that, though, seems to contradict. There *is* a slight increase… but no evidence of substantial tumor enlargement.

OK, so, what does it all mean?

I don’t know! It is not the miracle we irresponsibly hoped for, but it is not crushing news either.

Either way, we should get more clarity tomorrow when we meet with Dr. O’Dwyer. We are very anxious to hear his thoughts, how he’d weigh these variables, and what changes, if any, he recommends making moving forward.

So, we have information, but we don’t have answers. We have an appointment for tomorrow morning with a world-renowned expert who will help us to make sense of it all.

I hope.