I just went back and read my last blog. It made me smile. It made me feel better all over again. However, for those who have been following what's been going on with me - here's a brief update.
Just a couple of days after that posting my husband had surgery on his neck again (he had the previous July). This time the cut was huge and painful. The doctor told us he had a "small tiny bit of cancer" and that he would need radiation. (That is a whole other story that is just too long and painful to write about yet)
Fast forward to January - and now the "tiny bit of cancer" is more involved and not only did he have to have radiation, but he had to have chemotherapy too. Before he began all of that, he had to have a port put in (something they surgically put in your chest area so you can have your chemotherapy without going in a vein in your arm) put in and a stomach PEG so that when he finally had radiation he would be able to get food because he would not be able to swallow.
LONGGGGGGGGGGGG story short... he was in pain from the stomach PEG from day one. Mr. Polite Doctor who installed it, kept saying it was in correctly etc. However, something was wrong. My husband endured the pain, took medication to get through it and when the time came to use it after 2 months (at least) of chemo, he got to use the PEG for 1 1/2 days. YES... a whopping day and a half. Then the PEG started to ooze out of his body (best word I can use to describe it). I took him to the emergency room at around 6 a.m in the morning on a Sunday, where the doctor on call proceeded to snip a tiny flap of skin that was holding it in. Did he attempt to put it back in? No. Guess what? If you have a stomach PEG and it falls out. You have maximum 8 hours to put it back in. No, I did not know this at the time, NO, none of the doctors told us about this. We learned this on the INTERNET. Don't you think that patients should be receiving this type of information from the doctor or someone at the hospital BEFORE it is a problem? Maybe when it's installed? Patients and their caregivers shouldn't have to rely on info they find online. (OK, enough of my rant).
Now... he can't swallow and there is no way to give him nutrition. We actually track down Mr. Polite Doctor who is pissed because we just showed up at his office, and that he is really not at work, because he is on vacation, etc. He makes an attempt to put some other type of PEG thing in the hole and announces "Nope, hole is closed up" and complains to us (the cancer patient and me) that the doctors around here need to know they should be replacing falling out PEG tubes... blah blah blah. Anyway....
Mr. Polite Doctor says "He can do TPN". Since I am not a doctor (polite or otherwise) or a nurse, I had no idea what TPN is. I ask for him to explain. He gave us a nice quick explanation and I think he said he would call my husband's oncologist. The following day, my husband started with in-home TPN (Total Parenteral Nutrition). I had to become a nurse and hook him up to this bag of "food" each night. He hung it on a pole and wheeled the damn thing around for 12 hours for more than a month or two (I could go look it up on the calendar, but we are trying to forget this bad "dream").
He is finally done with the TPN, and can eat again. While his taste buds are not the same as they were before radiation, they are improving. He is eating anything he can. Somethings, he just can't eat right now, but it doesn't stop him from trying.
I see improvements in him every week. A couple of weeks ago he thought he wouldn't be able to return to work. He is now planning on going back in the fall. It will be a little bit more difficult for him in the beginning of the year, but my hope is that he will continue to get better and everything he has to do will be less of a challenge for him.
I think I helped him along the way. I believe my cancer diagnosis and recovery was practice for us to get through his. I can see both sides of the story now. The person who is sick and the person who is the caregiver. Actually, we both have both perspectives. I think it is SO much easier to be the one diagnosed with cancer than to be the caregiver.
His surgeries, diagnosis, chemotherapy and radiation therapy have made for a long year for us, but we are finally looking toward getting back to "normal". Whatever that is.
