Eating to Live, Not Living to Eat.

I am planning that the NEXT post will have a picture of me on it.  Right now, I don't have anyone to take the picture, my "office", in which resides the computer my photos are on (I am not going to put them on this laptop) is being occupied by a very special lady.  I also have a very special reason for waiting, and you all will just have to wait, too.  

So, the new news in the recovery process, is that Tuesday, we went to Omaha to meet with the swallow therapist to see how things are going.  I wrote down some of the things I have eaten.and told her about them, too.  It's pretty exciting to be able to say I've eaten cake and pie (smooshed up with ice cream) and that I've tried ham, and chicken, and meatloaf, and shrimp.  Soup is a life saver, because I can get it down when I don't feel like eating.

Because, sometimes I don't feel like eating.  It is boring.  Things don't taste bad, they just don't have much taste.  I used to LOVE eating, things always tasted so good.  I loved eating to the extent that I weighed more pounds that I care to admit before surgery.  I started to lose some of that before surgery because it was getting harder to eat.  I couldn't breathe through my nose very well.  I've lost more learning to eat again, and I'm down to my limit.  I set myself a certain amount to eat on my plate and make myself eat it.  I drink a glass of milk with every meal, for the extra calories.  Some meals I don't want to face food at all and drink an ensure.  But, I'm being careful.  I have to eat to have stamina, I have to eat to keep alive. I need some Culver's custard to help with that, too.  

For lunch we had beef and noodles.  They were a little drier than some food I've eaten, but with drinking milk after every bite, very doable.  I felt like I was eating "real" food, food that everybody else was eating, not some I made especially for me.    The upside to this, is that I found it ready made in the freezer, so it was easy to heat and eat, since we have company.  '

 The therapist was very pleased with my progress.  I've met all my goals, swallowing, chewing, eating out, and eating in front of other people.  She planned I would meet my goals in March, and I was done a month early.  I'm am finished with therapy!!  YAY!!  In fact, she was so pleased she called the doctor in to show me off.   (We hadn't planned to see him that day.)  So, we had a little celebration all together.   And then, Jim and I went out to eat at Valentino's.

I had big ideas last spring to go all through the house and tidy and de-clutter and throw away.  Instead I took a trip down Cancer Way.  So, I'm slowly working on some things now.  The bathroom that was full of medicine and other medical paraphernalia (did you know that word has two "r's" in it, I didn't) is now pared down to only the stuff that is being used now.  

I've started on my bedroom, which has been a dumping ground for stuff for too long.  I hung up lying around clothes and sorted out our dresser.  Jim helped me clean the bathroom closet, and we took bags of stuff to the good will that had been there for months.  It is starting to fill up again as I sort.  I won't wait as long for taking them away as I did before. 

I use my sitting down, resting time to knit and crochet.  What fun it is to make things again.
  

I Can't Smell But I Can Hear

Once in a very great while I struggle with my taste and smell issues, but usually not for very long.  Especially now that I am finding things that I think taste good when I eat them.  I just don't think about it.  I push the "oh, I will never smell that again" out of my mind for the most part, or else, take a little time to smell in my brain and think how I appreciated what I could smell back then.  Another good exercise is to remember some others who are struggling with far worse issues than no smelling. 

Actually, I do smell a little bit, but the kind of smelling this is, so the doctors say, is a chemical reaction in the brand not a stimulation of the olfactory nerve which makes a true smell.  For example, kleenex has a smell, and so does the inside of my nose once in a while.  Ammonia is another "smell", maybe I should say odor, that really isn't a smell at all. It's the chemical reaction thingy again.  And I can smell that for sure.

Anyway, about the hearing bit.  I went in this afternoon to have the ENT doctor evaluate my ears and hopefully put tubes in to relieve the pressure from the fluid behind my ear drums.  My Omaha doctor recommended this after three months of no improvement and  my hearing was getting worse.  

In fact,  it was so bad these two weeks I couldn't hear Jim when he was sitting next to be at the table speaking in a normal tone of voice.  So after a hearing test to make sure the nerves weren't damaged, I had the tubes put in right there in the office.  It isn't exactly a pleasant experience either.  Although, I've had plenty of worse ones.  I am getting a bit tired of being poked around on.  The ear drum is numbed before the put the tube in, but in order to numb it, well....that part hurts.  The 10 seconds or so they took to put the numbing medicine in took a long time, and I wasn't so keen to have it done the second time.  

But, as soon as the fluid was suctioned out and the tube in, I could tell a big difference.  It was no longer like listening to people through a fog,  

 I wondered when I got home how much hearing normal things would bother me.  They don't bother me, but it is like,,,"oh, I hear the refrigerator running", and my skirt swishing, and...did you know toilet paper makes a noise when you handle it?  Well, it does.  

It is really nice to hear people when they are talking a room away.  I just hope my Eustachian tubes decide to open back up again after awhile, although we were just informed that this is very normal after radiation and they may or may not open up again. Errrgh.  

I wonder how many more surprises there are in store. 

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.)

Aunt Inez

Jim's Auntie died in January.  She was 91.  We were privileged to be there at the end.  We were able to have our little family together again.  (There are only 10 of us.)  Some have suggested I write a tribute to her, the last of her generation.  But, I found I've already done it.  

Click Here