We had a fun time in Lake Geneva Sunday/Monday. We ate lots of food, exercised our brains in an escape room, and exercised our bottoms on a horse ride. The weather was beautiful and we had a great time together.

Rebecca had round 2 of chemo yesterday (Tuesday). They said that her tests from Friday all looked great. Coldness/tingling in hands/fingers was much quicker this time and today seems more intense then last time. If things continue to ratchet up this much on subsequent treatments I don’t see going much more than 1 or 2 more as it’s uncomfortable and borderline painful for her hands. Other than that she’s just feeling pretty tired this time so far.

Not much else to report as things are just the normal suarez busyness:

• getting ready for abigail’s graduation party in june
• preparing for abigail to head to college in the fall
• annabelle got her drivers permit last week and is in driver’s education over the summer, so we are putting in the miles/hours that are needed for her to get her license in Jan
• we looked at kittens on saturday, so I’m thinking we’ll have another 4-footed friend soon in the suarez household
• work and home and church duties as always

I’ll update when there is more to update, but it may be a week or so if nothing new comes up.

Thank you all for your continued love/prayers/thoughts.

We met the Chicago oncologist today. The 2 hour plus drive in reminded us why we don’t like driving to Chicago 🙂

The doctor is a specialist on gastro oncology. She walked us visually through all of the scans that have been done over the last few months and the tests that have been done and explained what they show, why that does (or does not) matter, and why they then went in this direction or that direction based on that. Made lots of sense and was nice to be visually walked through.

We didn’t learn much new information, but a lot of confirmation of what we kinda half-knew, but hadn’t had an expert confirm. We are attacking this bluntly, so excuse mine, but I believe clarity is better than vagueness… The average lifespan for what Rebecca has is 2-3 years from diagnosis. The therapies will eventually not work, and so they will keep switching them until they either run out of therapies, or until they are just not doing anything to hold things off. We kinda knew these things, but the doctor confirming added a realness that hit different.

Despite this we are keeping a positive attitude. There’s no reason to waste a bunch of time crying in your pudding (what does that even mean?) when there’s a clock ticking. We are going to see how this round of chemo goes and see what effect is has on things, and meanwhile we are going to try to be more intentional about the time we are spending with each other and our girls as it appears to be diminishing much faster than we would have chosen.

Rebecca and I have a strong amazing marriage, and we have some insanely awesome kids that enjoy hanging out with us. We are both so thankful for this. We are also very blessed to have a very large support network of friends and family around us (like you guys). Keeping positive and exercising and keeping at it will help to eek out more time with Rebecca, so that’s the goal right now. We continue to appreciate prayers for us. God has given us so much, and he continues to do so.

We have tests and an appointment on Friday in preparation for chemo on Tuesday, and we are going to head up to Lake Geneva after church Sunday and stay the night and hang with the girls for Memorial Day. I’ll give an update after chemo Tuesday.

Abigail had her graduation on Saturday, and we were able to hang out and get a meal with family, so that was nice.

Rebecca has her first week of chemo in the books, so that’s good too. There was a little nausea, but not too much. The cold sensitivity was definitely a thing though, and it was weird. Things like touching glass, or metal were even “prickly” to her fingers, also after her hands would get cold they didn’t operate so well. We aren’t looking to that increasing as the dosses go on, but we understand now why the nurse said that almost no one makes it the full 6 treatments on that drug because they can’t handle the sensitivity to cold.

We are seeing the Chicago doctor team this week on Wednesday, and then into the local oncologist on Friday to start the the chemo process the following week again.

We did the first chemo treatment today.

We were at the cancer center for 5 hours

First they gave Bevacizumab ( Wikipedia ), which is a monoclonal, so not really chemo. She took that for about 30 minutes with saline. It works by inhibiting the growth of blood vessels which kinda works by choking the cancer from being able to grow

Then they gave her some anti-nausea (Zofran) and a steroid to prep for the next drug. They also gave some IV vitamins that help activate the first drug.

Then they started the Oxaliplatin ( Wikipedia ) with Leucovorin – this is another drug that has the job of trying to disrupt the way that cancer cells grow and multiply. The Oxaliplatin is the one that has some strange cold sensation things with it. Where she will have to wear gloves when handling cold things, not drink cold liquid and will have sensitivity problems in general with anything cold.

Right before leaving they gave us a “kicker” of Fluorouracil ( Wikipedia ) – also known as “5-FU” (which makes me giggle to say) – which will then continue to be administered via a portable pump that we take home with us – it’s done this way as they’ve found that it does best when administered over 48 hours, so it pumps a little in every hour. We have to go back to the hospital on Wednesday afternoon to have them take the pump back and remove the line from her port. The Flourouracil messes with the ways that cells make and repair DNA to (hopefully) screw up the way that the cancer makes and replicates itself.

Our conversation with the doctor on Friday was pretty normal, other than conceding that the cancer is terminal, it sounds like timelines are hard to nail down until we get through a first chemo regimen (3 months) and we can see her cancer is reacting to the treatments.

We got “Chemo Teaching” today at the oncologist. It was good and helped to provide clarity around what the process will look like, and what kind of side effects may occur.

Chemo starts this coming Monday (12th)

Rebecca will be doing chemo in 3 month stints, every other Monday for 4-5 hours she’ll get 2 types of chemo, and then will wear a pump for 48 hours that slowly administers a 3rd chemo, then into the the doctor that Wednesday to have it removed, then meet with doctor the following Friday for blood and urine tests and then another round of chemo the following Monday. If this is confusing this may help to visualize:

… that will basically repeat 6 times (so 12 weeks in total)

We will meet with the oncologist this Friday (9th)

Prayer requests:

• for our conversation with the doctor this Friday, he was very vague at our last appointment, and from looking into things this doesn’t seem to be a very vague type of disease. We are hoping he is more forthcoming in things to either confirm or deny what we’ve found out. We are also hoping to get some realistic estimates on timelines so that we can start making plans
• for the girls as that conversation was really hard, and they tend to hold things in more
• for Rebecca to keep positive even in what seems like an ocean of negative
• for God to strengthen me and help me to serve Rebecca well through this

Met with the oncologist today and they are pretty certain it’s from the small intestine, so it now has a name: metastatic small bowel adenocarcinoma

Scheduling an appointment with the Chicago surgery team for their opinion as well, chemo to start in the next couple weeks. Not a lot to update on, nothing is scheduled yet for a next appointment with anyone (other than a chemo teaching appointment on Friday next week)

Pray for Rebecca, today was not a good conversation of what the future looks like.

Rebecca had her bone marrow biopsy done on Tuesday, she also had her port put in at the same time (I had no idea that a port was a completely under the skin thing, kinda strange).

We had the colonoscopy this morning in the hopes that we would find the origin of the cancer. I found out today that this is called a CUP (Cancer/Carcinoma of Unknown Primary). The doctor said that things looked good, but that he did see there were a lot of polyps at the entrance of the small intestine, so he’s thinking that maybe that is where we are going to find it. He’s(gastro) just following what the oncologist ordered, so he’s bouncing us back to the oncologist for next steps.

We have an appointment to see the oncologist again on May 1st, so unless he can see us earlier, or he kicks us to the Chicago team we won’t have any more info until then.

We changed the port install and bone marrow biopsy to be on the same day now since it’s makes sense to do both procedures together. That will now be on the 22nd (next Tuesday)

Also colonoscopy is set for the 25th (next Friday)

• We have scheduled an appointment for the bone marrow biopsy next Friday (18th)
• The oncologist doctor called today and said that he had talked with the Chicago team again (who we found out is made up of some of his professors) and they want Rebecca to get a port put in to start chemo soon.
• Scheduled port install on April 21st
• Still working on getting the colonoscopy scheduled
• Waiting to get an appointment with the Chicago team (but they may want to wait until after the colonoscopy)

We are very thankful that we had the resources to be able to go to a much higher and better insurance plan for Rebecca back before her heart surgery in 2023. The Northwestern experience has been top-notch, very nice staff and doctors. It’s amazing that her doctors are talking back and forth constantly, and the fact that all of the information and test results are all in the system they use day in and day out has certainly made things easier. It’s been a small blessing in this uncertain time.