A Good Path

Today has been a good day. In fact, one of the best for a while when everything is considered. The key will be to continue moving forward with business as usual. For us, that is the only way to approach everything right now. Our world will not stop moving forward, and for that I am grateful.

Day 56

Today is about 2 months since the diagnosis of Stage 4 Peritoneal Carcinomatosis for my husband. As with everything else, we did not wait around to look for other opinions [yet] but dove right in to treatment. A quick recap: At the time of the new diagnosis, he was perpetually in and out of the emergency department and inpatient hospital stays for severe nausea, vomiting bile, constipation, nothing was moving through his system. Everything stopped in his gut.

It reached the point several times where just swallowing saliva and normal internal secretions were causing these episodes. Forget about eating or drinking. His abdomen was constantly hard and distended as everything bound up and wouldn’t move along, but he never had a blockage. He was out and out miserable, I was distraught, and we had no clear answers.

At first we thought everything was being triggered by a dilation that was allowing him to have bile reflux and maybe froze his small intestine long enough to allow barium to not pass through and stop him up. Then we thought maybe it was opiate induced constipation. Finally, someone noticed a spot on a CT scan and a biopsy gave us the new diagnosis and treatment. It has been a long 2 months.

The Treatment

He is currently receiving FOLFOX chemotherapy. This consists of the drugs FOL– Folinic acid F – Fluorouracil OX – Oxaliplatin. He goes in to the clinic every other Wednesday to start treatment and comes home with a little pump that runs for 46 hours. He returns to the clinic on Friday for disconnect. I have not pushed them to let me disconnect him at home. I did ask once, but they want him to come in. It works for now, so I do not worry over it.

He is also on TPN [total parenteral nutrition] for 12 hours overnight, every night. This infuses by a pump into one of the lumens on his triple lumen PICC line. I add the vitamins, some Pepcid, and some insulin to the nightly bag, hook him up, and disconnect him in the morning. Since I am responsible for this at home, and his home IV medication, I don’t fuss about disconnecting his chemo.

He is also on IV Reglan [metoclopramide] 3 times daily and IV dexamethasone every other day. This combination really helps his GI motility. We will be starting oral liquid Lasix [furosemide] shortly as he has been experiencing bilateral lower extremity edema.

The Current Status

The FOLFOX is considered to be working! We are so happy. Him probably more than anyone else. He had a CT scan this past Wednesday, and we got the results today. The calcifications/tumors on either side appear stable. He has no new hot spots! There is no metastasis lighting up anywhere else. The only downside is the peritoneal carcinomatosis is so diffuse than we can no visibly see the shrinkage of whichever little nodes were inhibiting his GI tract.

But! that’s not really a bad thing, because his gut is acting more normal. He has begun to move his bowels without assistance of enema or suppositories and at a more regular rate. He has been eating soups and now is progressing on to softer foods. His only hiccup is that he still needs to learn how much is too much so he does not overfill.

He looks good. Even his oncologist mentioned it today. Almost every time he has gone to the office he has been pale, weak, carrying a little throw up bag, often using it. Today, and over the past week, he has gotten his color back. His spirits are good. His temper is a little short, and his brain to mouth filter is just plain gone, memory is not great for short term things or sometime recalling specific words, but overall I could not be happier with where he is at.

This was such good news right before the fourth of July!

Where We Are

The main problem he is having right now is lower extremity edema. It has progressed to lymphedema, probably caused by damage to him lymphatic system from the cancer treatment. The main symptoms plaguing him, aside from swollen legs, is something called lymphorrhea. His legs are perpetually leaking lymphatic fluid. For right now, we have to keep them wrapped at all times. He is seeing wound care that does special wraps, and if those bother him, or the day before they are changed, we remove them and I just do dry, sterile wraps to contain the fluid.

He has to get more protein, orally, or I may ask if that boost the TPN, and reduce his sodium intake. The other thing we are trying in the Lasix. This will be the first treatment medication we are trying orally. Since his system seems to be moving along again, we are starting here, and slowly going to try and progress his IV meds to oral liquid.

If that is successful, and he continues to eat normally, we will work on getting rid of the TPN, which would be awesome. The PICC line can stay in indefinitely, especially with me watching the dressing on it and changing that as needed, too. If he stops the TPN, they may decide to remove the PICC and put a port in. That is a conversation for another day.

So, he is doing remarkable, all things considered. As he has stated to me, “No one is going to put an expiration date on my ass.”

He will continue with his current chemo until it shows itself to no longer be working. Here’s to another good scan in a couple months or so, and to continued progress, and business as usual!

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