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.

Since November (’24) Rebecca has been experiencing pains in her lower right abdomen, she thought she may have a hernia. We made an appointment to see a doctor, but that seems to be a great undertaking these days (to get an initial appointment with one). So we weren’t able to get in to one until mid-january. The doctor had Rebecca get a whole bunch of blood tests and ordered a CT of her pelvis. Results of this were “numerous abdominal and pelvic lymph nodes”, and issues with the bile duct of the liver were observed. The doctor wanted us to schedule appointments with a gastroenterologist and an oncologist.

The soonest we could get into the gastro was mid-march (they wanted to do July), and the oncology place didn’t want to make an appointment with us until we knew what the gastro place said. So we waited.

Coming up on our appointment in mid-march we noticed that Rebecca’s left leg was retaining water/swollen. We reached out to her doctor and when it was still present the next day the doctor sent us to the hospital (in case it was a blood clot). At the hospital they ran a battery of tests and noticed the lymph nodes and reached out to the oncology office (that we hadn’t even visited yet) and that doctor ordered a whole bunch more blood tests (along with leukemia, hiv, hepatitis, and others). He also had them do a CT of the chest and of the abdomen and pelvis. Ultimately there was no blood clot, and the swelling was attributed to the enlarged lymph nodes putting pressure on something at the top of the leg that was causing the swelling.

We saw the gastro several days later and he had already been strategizing with the oncologist on what they wanted to do. We did appointments for an MRI of abdomen, and a PETCT scan and more blood tests.

We met with the oncologist on April 2nd and he was not sure one way or another as some things were pointing to cancer, and others were not. We had an edoscopic ultrasonography (EUS) of the upper GI scheduled (on the 4th) and he was hoping that it may shed more light on what was going on, and that if the gastro was able to he would do a biopsy during it and maybe get more info.

On April 4th we went in for the endoscopy (EUS) and it went well. Afterwords the gastro came in to see us and let us know that he was able to see a lymph node while doing the procedure and that it tested positive for cancer (adenocarcinoma). We were a bit shocked that we were able to get info like that so soon after the test, we hadn’t been ready to receive that info right then (we had assumed we would get info the following week – since it was a friday)

An appointment was scheduled for the oncologist on April 10th.