Commonly Asked Questions

“Laugh hard, Run fast, Be kind.”

You have Questions. We have Answers.

What exactly is wrong with you?
I have Cancer. Specifically, I have stage 4 adenocarcinoma, which is any cancer that forms in mucus-secreting glands throughout the body. In my case, it is believed to have started in my small intestines and has spread to the lymph nodes in my abdomen and neck, pancreas, illium, pelvis and right femur.

What’s your prognosis a.k.a. how long do you have to live?
Statistically speaking, 1-3 years. But that’s just statistics. No one knows how long they’ll last, and that includes me.

How are the kids doing? What do they know?
The kids have known their whole lives that I get sick from time to time, and they are used to me seeing doctors and taking medicine for Crohn’s. That has made this situation less unusual to them than it might be to children who weren’t used to a parent with a health condition. We’ve explained that I need extra medicine and am seeing more doctors because my insides are extra grumpy right now, and that sometimes that medicine is so strong that it can make me feel sick too. They have accepted this answer, and are not upset by seeing Jessica and I setting up and attaching my TPN each day or seeing my PICC line or port, or by the home health nurses coming through. (Margo actually loves watching as much of the medical stuff as she is allowed to. Ellis was scared of the port at first, but is fine with it now.) We will continue to tell them a kid-version of what’s going on as we figure that out ourselves. We are fortunate to have many many friends and neighbors and family members helping us with the kids, which has meant that most of the short-term impact on their life from this is that they get a lot more play dates and sometimes get picked up from school by someone with a cooler car than us:) We are also in touch with a group called Wonders and Worries. They have great resources on their website, if you are curious about some basic ways to talk to kids about these things.

What can I do to help?

  • We have a Meal Train if you want to sign up, although it’s already pretty full.
  • Come over and play a game. Jeremy loves tabletop games.
  • Let Margo and Ellis come play at your house
  • If you like traffic, sometimes rides to or from chemo can be helpful if it is a week when Jessica doesn’t need to be there
  • Pray, if that’s in your wheelhouse.
  • Be sure NOT to come over if you are sick.

Where are you receiving treatment?
Texas Oncology South
Punit Chadha, M.D.

What treatment are you receiving?
FOLFIRINOX, a chemotherapy regimen consisting of 5-fluorouracil, leucovorin, irinotecan, and oxaliplatin. It is now considered the first line standard of care therapy for metastatic cancer patients that are deemed able to tolerate it. I get chemo all day every other Tuesday at Texas Oncology for most of it, and wear a pump that administers one of the drugs slowly over 46 hours for two days following.

Why are you also on TPN?
TPN (Total parenteral nutrition) is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. Jeremy’s TPN is going in through a line in his arm, and if you come over you may see a thin tube coming out of his shirt attached to a backpack. That’s the TPN – Yum! TPN is used when a person cannot or should not receive feedings or fluids by mouth. In Jeremy’s case, he lost a lot of weight quickly because his gut was no longer able to absorb much, and it was determined that needs TPN to maintain his weight.

After dropping down to 48 kg (107 pounds) the TPN has now brought his weight back up to 55 kg (122 pounds). The goal is to get up to 60 kg (132 pounds). He is eating some by mouth again in addition to the TPN, so this seems possible.

What other treatments are you aware of / are considering?
Considering

  • The Kotsanis Institute of Functional Medicine
  • MD Anderson in Houston (this could be drug trials, immunotherapy, or other less common options) Jeremy has been admitted there as a patient, but we are just in the beginning stages of them running their own tests and comparing notes with the doctors here before possibly making suggestions.

Using

Tried/Failed

Do you (Jeremy) want to know about other forms of treatment?
Sure. Your suggestions are always welcome.

I don’t promise to try it.

If you are okay with that, I’m glad to hear about anything you want to share.

Question Not Asked Here?
Ask away. I’ll post it here.