Thursday, February 7, 2013

A Milestone

Today really is a milestone for me.  This morning, I presented myself in the surgery center at 6:30 am and was prepped for the first surgery of the day with my surgeon to have my feeding tube and port removed.  I am SO happy to have the extra hardware O-U-T!  My port never did work well.  If it was used again after a few days had passed it would be plugged up with a fibrous membrane over the little tube in my vein and had to be de-clogged with a $500 medicine.  Every time chemo started up again, we would have to wait an extra half hour for the medicine to open up the catheter tube so we could begin.  In fact, one time, they started me on the IV for a jump start.  Because of that, the port was only used for chemo, all the other blood draws were done by the normal poke in the vein method. You know, I am getting tired of being poked.
Taking the tube out is really a very simple process.  They just pull it out.  They usually just do that in the office.  It gives me the heebie-jeebies just thinking about it, so I am very glad that I could have it done at the same time as the port removal.  They don't even stitch it up.  The hole in the stomach will seal up in less than eight hours and the outside one in about 48. They don't put a stitch in because of infection, since the hole has had access to the outside of the body.
Since the port was clear under the skin, it took a little longer with stitches being used inside.  They just put steri-strips on the outside which wear off in time, no stitches needing taken out.

I am now learning what I can eat, and what I can't; what tastes good and what doesn't.  My mouth is still very sensitive and anything spicy or acidy hurts, so I am going for bland foods.  I try new things to see how they work and I am learning to chew again.  Mostly, if a food is bland and wet, I can eat it.  Things like canned pears, cottage cheese, chicken noodle soup, cheesy broccoli soup, potatoes, carrots, and canned peas in white sauce.  Meat doesn't work very well yet.  It is all about learning to manage food and my tongue all over again.  However, I am making progress in this area in leaps and bounds and I'm working on volume.  I did lose some more weight during this process, but I don't want too lose too much.  And with food comes strength.

There are some funny things that have happened in this recovery process.  I was going to do a separate post about some dreams I had during chemo, but I think I'll just put them here:

Two really funny things from my chemo brain

Saturday afternoon I heard Lynette's voice as I was waking from a nap, eyes still closed, and I thought "It must be 4:00, Lynette is home from school, wow, I've have a two hour nap." When I sat up, the clock said only 3:00.  I started to sputter as well as I could with my limited speaking skills, to ask why Lynette was home from school so early.  My mom and Lynette looked at me in utter disbelief as they announced, "This is Saturday!"
I went back to my nap.

   One night, I poked Jim in my sleep and he woke up and asked if I wanted something.  I shook my head and we went back to sleep and I poked him again! He asked again if I wanted something and I didn't.  It happened a third time and Jim was really awake this time and asked why I kept poking  if I didn't need anything.  I was awake too, and I think this was what was going on;  I was dreaming that Jim was saying, "If you need something let me know."  And I was "letting him know", all in my dream.  Since it was all a dream, we both went back to sleep and there was no more poking. 

Another really strange thing that happened was when the hair on my arms and legs was starting to grow back in.  One day I noticed bumps all over my arms and legs, looking closely I saw little round circles just under the skin.  It looked like ingrown hairs and I poked at one with a pair of tweezers.  Sure enough, here the hairs were growing round and round just under the skin.  I pulled some out with the tweezers and otherwise just scratched or rubbed the rest.  I think they are eventually working out themselves as time goes on.

And yes, I know you people would like to see a picture of me with my hair on, but I won't take the time today.  I'd like to have a picture taken before it gets any longer and it curls.  At least, it is supposed to, and my sister-in-law gave me tips on how to help it when it gets a little longer.  It is long enough, (a little over an inch) that is sometimes needs combed down.  Especially my crown, that wants to stick up, combing or no combing.

I mentioned in my last cancer post how long it is taking for recovery.  My family felt like it was taking too long, and I was dispairing of ever feeling normal again.  Even the doctors said it was taking me longer than they expected.  However, it is supposed to take a long time.  There are things that we didn't consider, that the effects of ehemo and radiation can take a year before they are better.  The main things I am dealing with now, is lack of saliva and taste, and fatigue.  The lack of taste makes it hard for me to want to eat.  The fatigue is the result of radiation to the frontal lobe of my brain and could last up to a year.  The taste issue will get better in time and we just have to wait and see about the saliva.

However, this week I have been feeling really good.  I've been putting some extra effort into getting things done.  I've been splitting a couple of hours between house work and office work in the morning.  After which I am really pretty tired, so I can sit down and rest before lunch, getting that out of the way and resting again before making supper.  I'm pretty tired by the time to go to bed, and I'm really not doing a whole lot, but I have to make a start.

This feels like a rather disjointed post, but sometimes life is like that.

(Some of you commenters may have noticed that now I have a word recognition thingy to type in before a comment can be published.  It seems the easiest way to get rid of all those spam comments I was getting.  It means an extra step for you all, but it is easier on me.)


The Chairman's Wife said...

Good news from you! Happy continued recovery!

Bonita Sue said...

Wow! Sounds just like my sister-in-law again! So glad you could ditch the extra appendages. And the best part is that you don't NEED them either.

The J's said...

I am so happy to read this! I love having you able to feel like connecting again on blog & FB. It's really been quite the year but I think it sounds like you're doing great. Hopefully a longer/slower recovery time will mean helping you not to over-do it. Thankfulness is a wonderful thing!

Anita said...

Glad you got the tube and port out. I had an abdominal surgical drain pulled like you described...while I tried not to watch. Thankfully, it was very fast but it was an odd sensation. It was amazing how fast the hole healed. Our bodies are pretty amazing!