Radiation week #2 and surgery education

***Lots of education about upcoming surgery below*** please note, some info very simplified regarding organ/digestive function and such

2 weeks of radiation down and 1 to go!  Admittedly we are all getting a bit tired of being separated during the work week and then Tom having to drive back and forth on weekends.  His radiation effects are also catching up to him as he's been tired/fatigued/napping more.  We've been warned that this week will likely be the hardest and will continue for the next week since the effects are cumulative.  

They will be doing additional bloodwork this week to make sure everything is holding steady from the radiation treatment and chemo pills.  This does include a CA19-9, but they've shared not to be surprised if it's much higher as radiation tends to increase the levels--however like most things, it affects everyone differently.

Tom has been staying at the Hope Lodge run by the American Cancer Society in Rochester.  It's for patients undergoing cancer treatments at Mayo and has a room for the patient and one caregiver (if needed, no one under 18).  It has an individual bedroom/bathroom, and then shared living room space and an extra large shared kitchen space.  I don't believe Tom has participated much, but they also have "activities" every day--Bingo, Therapy dog visits, Trivia night, Singers/music group, etc.  Overall it's been great--it's free, has a parking spot for length of stay, and is walking distance from Mayo.  You also have a locked cabinet in the kitchen and designated fridge space for food.  Tom says they have been super nice and helpful in his time there.  It's not something I was familiar with, so found some additional information in case that's true for others as well...turns out Lubbock TX has one as well as Iowa City!  American Cancer Society Hope Lodge | What is Hope Lodge? | American Cancer Society

We've also been meeting with specialists regarding the changes that will be occurring during surgery and how to adjust cares for post op needs.  As previously shared, the intent is Tom will be losing several organs that help the digestive process.  
1. Pancreas (makes insulin and enzymes to help break down food)
2. Gallbladder (stores bile which helps digests fats) 
3. Stomach (has acid and digests food into small particles) 
4. First 3 feet of small intestine (helps break down nutrients to start absorption) 
(he's also losing his spleen, but it's not digestive 😂)

Because of this, he will be a type 1 diabetic-surgically induced immediately post op.  We have met with the endocrinology team to start discussing blood sugar checks, continuous glucose monitors, insulin injections, and a plan to move toward an insulin pump.  These are very early and basic discussions to introduce the ideas and terms.  We will have one more education pre-op and much more extensive education post op while still in the hospital.  I included some pictures on what the continuous glucose monitors (1st pic) and insulin pumps (2nd pic) look like for those that aren't familiar.  Most people tend to know someone that has type 1 or type 2 diabetes and it's a bit more common.

       

We also met with their Home Enteral Nutrition team this week and learned he will for sure have a feeding tube (jejunostomy) post op at least initially.  The surgical team will place a small tube through his abdomen into the small intestine (jejunum) so he can receive nutritional formula via that tube.  He could have it for a short term (1-2 months), longer term (6-12 months), or even forever.  It will initially be longer like the picture below; if he keeps it for a longer period of time, they make them that sit closer to the skin more like that "nub" you see.  He will physically be able to eat most things--it will be learning what his body can/can't digest easily.  Things like raw vegetables are really hard to digest and require a lot of work from your body--he will need to avoid those.  The jejunum does the heavy lifting of absorbing nutrients--however Tom's body will need a chance to adjust and support with oral enzymes to mimic the pancreas, the insulin to support the blood sugar, and smaller/frequent meals since his stomach isn't available to hold larger amounts.  We will have significant support from both their inpatient and outpatient teams to manage his diet and weight and monitor for any malnutrition concerns.          

This will be a HUGE change for Tom and he is understandable a bit anxious and overwhelmed, so he's been asking questions during the sessions and then he and I chat about it as well.  I am less concerned about the "extras" post op.  As most of you are aware, I have a significant advantage of helping manage and support enteral nutrition (g-tube, gj tubes, NG tube, J tubes, etc) for the last 20 years, so this all feel very comforting and a great "back up" for nutrition management.  While the number of diabetic patients in my career isn't near as high, I'm still pretty comfortable and confident in how to manage that as well. 

Tom has 2 more appointments this week that I'm hoping to attend via conference call with the vascular surgeon and an education session about pancreatic surgery.  The rest of his appointments are just radiation treatments and a check in with the Mayo oncology team.  

Otherwise, the girls and I are surviving with school and work--volleyball ended this weekend, so we'll have a bit more free time.  The countdown is on for Spring Break--only 9 school days left 😁 
We are also SOOOO ready for Spring to show up in general that I'm thrilled to see 40+ temps for this week 🌞