Going Home

We went "home" last weekend.  I haven't been there for a year.  I seemed like a good time to make my first visit to some where else than the doctor's office.  Usually, to celebrate my birthday we take a trip to my folks.  It was a little later this year since my dad was gone to some meetings on the more logical weekend.  

It is funny that the place where you spend the first 18 years of your life is still "home" no matter how many years you spend somewhere else.  Actually, I lived in that house 13 years, but I wonder if it is the same for people who move often.  Is coming "home" just where your parents are?  I have a lot of memories stored in that old house and that neighborhood.  We walked out on the nice day that Saturday was, and we went by familiar places that aren't quite the same I remember.  The rock lined "pond" in a neighbor's front yard that used to hold gold fish and is now a flower garden.  The last north/south road before the river that is paved now, but way back when it was gravel, there was a pig that lived just around the bend.  What used to be the "alley" just west of our house that was lined with poplars, across which we grew potatoes one year at the neighbors.  There are little apartments there now.  And it's paved.  Farther afield, while driving, we drove past the lot where our apartment house stood, that three story large house where we lived on the first floor a few years before I was five.  We would race to the large front window, jump on the couch that was under it to watch trains go by.  It burned when I was a senior, and we sold the lot.  There is a steel building there now.  I still remember the large trees that were there along the road.  It is hard to remember exactly which block the curving gravel road used to be that would take us right back to my folk's house.  It is paved now, the tangle of bushes and trees along it are gone, houses are built where before there was just a mess of woody area. It looks so much more civilized, but it isn't like I remember.  It's town now, not the edge of town running into untamed land down to the river.  Then we went past what used to be the trailer court which was my first home.  It is just an empty place now.  Nothing there but grass.

In some ways, "you can't go home again".  Certainly, I can't go back to what it used to be, but I can go back to the memories and that little town will always be my "home town".

Crafty Days

I've been doing a ridiculous amount of knitting and crocheting of late.  It is easy to want to do, like today when it is the 26th of March and it is 13 degrees F when we got up.  I've made three baby afghans, and three are in progress, six baby hats, these felted knitted bowls and the big afghan for us to snuggle under.
I've also done plenty of normal housekeeping things and office work.  I've been trying to feel like cleaning out   the bedroom we've made into an office, and it is so discouraging because I don't know what to do with all the scrapbooking stuff that is in the closet.  I don't have room to put it anywhere else.  I NEED to finish some  books.  Which I would if I wasn't knitting.
Speaking of knitting, I like to felt things.  It is cool to knit up some yarn and throw it in the washer and come out with something that is thick and feltly and doesn't look quite like it did before.   I had some leftover wool given me by a sister-in-law,  (I'm a good dumping ground for yarn) and decided I wanted to try my hand at some bowls.  They worked up quickly and are just plumb cute.  

They felted very nicely in my front loader with a load of towels. 

As soon as it got cold last year, when I was on the couch I was snuggled under a big thick afghan that was Aunt Inez'.  I wanted to made another one that looked better in our living room.  The purply-pink just didn't match. So I used this green variegated yarn and it turned out just the way I wanted.  It's nice looking with our new brown couch and love seat.  I wanted it heavy so I used double yarn with size 15 needles.  I wanted it pretty so I knitted in cables.  I was so careful in binding off so it was loose enough and I was pleased with the way it looked and felt.  So, I threw it over the couch to take a photo.  Imagine my surprise and dismay when right there in the middle of the piece---I missed a cable.  There it was glaring at me, and what to do.  I didn't want to take it apart and redo it, it took me so long already.  

So, I didn't. It's too hard to make everything perfect.  I usually do go fix a mistake if I catch it before I'm all done and it isn't more than a few inches back.  

 I remembered hearing something once upon a time about quilters making deliberate mistakes in a quilt, so I researched it on google.  I found they are called humility blocks and the story is a myth. It is attributed to the Amish especially, but plenty of other quilters would say along with them, "I can make enough mistakes without making them on purpose."

My birthday was last week and I decided to do something I especially liked to do on that day, so I invited a couple of friends over for tea.  They brought lovely gifts.  I think I fall way down on the gift department for others. Jim and I went out to eat with some friends that were in town for high school speech.  We had planned on going out sometime as a family, but Lynette was working that night.  She made my cake early,  and we ate it after we got home. I smooshed mine all up with ice cream. That's malted milk balls, and it wasn't so easy to get them to stick up there.  While she was working on it, I would hear, "plink, plink, plink" and an occasional "auuugh", but it turned out nicely in spite of all that. 

Then on Sunday, we had dinner with my older daughter, and they made soup so I could eat what they had, too.  How nice of them.  It was nice to see them and play with the boys again.  Before we left, though, Zane was cuddling up on Papa's lap.  He acted like he was getting sick.  If that boy is quiet, it's not normal.

Now I can get back to crocheting. 

Back to Our Regular Programming

I see two schools of thought when it comes to blogging.  The day to day chat of daily life, or the thought provoking posts meant to inspire.  It is too difficult to post the thought provoking kind all the time, although some people seem to be able to produce that sort of thing in the daily life posts.  I blog mainly because I want to write.  I want to chronicle my life and if thought provoking pops out, so be it.

Actually I like to read about daily lives. It's interesting how other people live and what they do.  

I said in my last post that I wouldn't be writing any more cancer posts. That doesn't mean I won't ever mention it again.  Cancer has been and the results are a part of my life.  My life, my way of life has been changed forever and my posts will reflect that.  But, it doesn't dominate my life and my way of thinking anymore.  It's still up there in my thinking, but not dominating.

Here I get ready to talk about ordinary life and I can't remember much of what happened in March.  Since when is life supposed to go so fast when you are ill?  I went to the theater boosters meeting and volunteered for treasurer and the scholarship committee.  This is the first meeting I've been to all year.  I've been grocery shopping by myself. I bought a bunch of new yarn, and finished a couple of afghans.  I have my tax stuff in to the accountant.  I've washed loads of clothes, cleaned house, knitted, crocheted, read, cooked, done office work for Jim, fed the cats and kept the fire burning,  Oh, and dishes, too.  I've not hounded my daughter enough to practice the piano.  We've been out to eat, had mother/daughter shopping and eating, in short, just normal stuff, and I'm enjoying it.  (Well, maybe not the laundry and dishes.) No wonder the time goes fast.  

Here are a few pictures of little things in March.   

Tumbler made in ceramics class.

Ditto for puzzle pieces

Flower meringue on mini lemon pies, by Lynette.

Mini cheesecakes and dipped strawberries.

My first coconut cream pie.  Jim loves it. 

Baby shoes from when I was a kid.  (Cleaning out closets.)

Cool t-shirt, made by Lynette, with bleach.

The Elephant in the Room

Some parts of this post will be very hard to write, and some of it might be hard to read.  I want to sort of "wind up" my cancer/recovery vigil, partly to come to an end of only cancer related posts, and partly to remind myself of where I am right now, so that in a few months I can go back and look at the progress I've made. I really appreciate those who have followed me on this journey, because it is pleasant to read the comments of those who are encouraging me.  

Anyway....I was in Omaha today for a doctor's appointment, again, I'm getting tired of going to the doctor.  However, this was a two months out visit, and so will the next one be.  The visits are now turning into, checking over all my lymph glands to see if there are any changes and cleaning out my sinuses, debridement, it's called.  It entails the doctor looking up into my sinus cavity (which is truly a one big open hole) with a light and a forceps with a tiny alligator mouth on the end, cleaning out the crusted old mucus lingering there.  This is part of the healing process, it used to take an hour every month to clean me out, and it took twenty minutes today, and then some suctioning, So, the doctor was pleased.  It means the inside of me is healing.  He said that someday, I may not have to have the clean out done at all.   I know it sounds horrible, and while it isn't very pleasant to watch, it really isn't painful, just a little uncomfortable.   

A year ago this month I was self-doctoring for supposed sinus infection.  After spring break, I went to the doctor and got antibiotics for said supposed infection.  And that is where it started.  A year later, I have half of my strength back, no smell, little taste, a tired brain, and hardly any saliva.  My sinuses are still healing, draining and producing extra mucus which drains down my throat and I gag.  But, I have no tumor, and no residual cancer.  

Any recovery now will be virtually unnoticeable.  So, it is time to say good-bye to cancer posts, and onto real life.  

Now, about that elephant.

Sadly, one of the things I've had to deal with during my treatment and recovery is the odor that lingers in my sinuses.  Some days, it is a really horrible smell that can be detected at a distance from me, some days it isn't there at all, some days you have to be right next to me to smell it.  It is caused by all that extra mucus sitting around in my sinus cavity.  Since my sinuses are not normal at all, they don't act normal either.  The stuff doesn't blow or drain out of my nose.  I rinse twice daily to remove some of the mucus, but it doesn't all come out and what sits in there gets smelly.  Jim and I spent quite a bit of time trying to find a pattern to the odor, like, does it happen when I have a certain taste in my mouth, or when my nose runs a little more, or if I have more drainage than usual.  But, there is no pattern.  I can't tell when it's there, I have no sense of smell.  I have to depend on Jim to sniff me before I go places so I can rinse.  That helps.  Except when it doesn't.  I don't like this. It bothers Jim sometimes, and the poor guy has to live with me.  And what about other people?  It makes me hesitant about getting next to people and talking to them.  It can be very unpleasant to be next to me when it is really bad.  Anyway, I know what is going on, we are doing what we can and I hope this isn't a permanent condition.  It was very encouraging today for the doctor to say that eventually I won't need to have the mucus cleared out, and I am hoping I won't have the odor anymore after that.

I am looking at another year of recovery, for sinus healing, for a normal voice, for possible saliva.  So, I am ordering my life to live for right now, if it doesn't get any better than this it's okay. 

 I'm fine. 

Anything else is gravy.   

There IS a Photo, Really!

Like I promised, here is my picture, the way I looked on Sunday morning.  I really wanted to have this picture up earlier, but everyone else is so busy, I had a hard time getting it taken.  If my photographers that live here weren't busy, I was in my pajamas.  Or I looked tired.  Or something.  

My hair is long enough now it is over the tips of my ears, and long enough to give me bedhead.  It is a little fluffy and very soft. 

And there is something new about me.  Can you tell?  

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

Getting Back to Normal

I know it has been a ridiculously long time since I posted.  I started blogging about my cancer journey as therapy, and later as a possible help to someone else.  That part has been niggling at my conscience lately.  

However, part of cancer recovery is what happens when trying to fit back into normal life.  It's a strange thing, but after focusing entirely on oneself for so long, it is time to think about other people and other things.  It is a disconcerting feeling trying to find what your place will be in the new life ahead.  I can't really remember anymore exactly all I felt, and it is very hard to describe, but I got depressed, frightened of the dark, and discouraged by how long it was taking to get better.

I didn't want to write these things, so I didn't post.  

However, life goes on, and the depression is past, I can sleep in the dark again, and I only sometimes get discouraged on how long this is going to take get better.  

So, where I left off at the end of October, I spent November working on swallowing water.  My mucus was mostly gone and my mouth was dry so I used a little spray bottle to keep my mouth moist and comfortable.  Salivary glands are affected by chemotherapy and radiation, and take a while to recover.  They keep your mouth wet without you thinking about it.  However, we will have to wait several months to know whether mine have been totally destroyed.  The amount of radiation they subjected my jaws and throat to, was right at the maximum for  permanent destruction.  The way I understand it, any more and the saliva would be gone.  So I am hoping that there will be some salvaged from the wreck.  

I gave up working on swallowing  sometime in there because it was just hurting me too badly.  I wasn't feeling that my therapist was helping at all and I just gave up.  Like I said before, I was rushing things a bit. 

Then finally in December, a wonderful thing happened.  My throat stopped hurting.  I could think about something else besides my throat.  I didn't have to try to stop myself swallowing.  I began to feel human again, instead of just a sore throat.  That month's trip to see the Omaha doctor was a ground breaking one.  I was smiling and my mucus had diminished to the point I could lie comfortably for the MRI.  

Another great thing was getting connected to the swallow therapist there at Methodist who works specifically with head and neck cancer patients.  She was hired to work out a plan to help people with swallowing problems after radiation.  She was cheerful, encouraging and helpful.  She made me believe I would be swallowing and even eating again.  

I started with drinking 5 mL of ice water, five times in a row, five times a day for two weeks.  Then we had another appointment with another modified barium swallow study which proved I should be able to swallow anything to the thickness of pudding.  So, I began to eat.  Yogurt, applesauce, mashed potatoes and gravy, pureed sweet potatoes and carrots, I was still tube feeding a couple of ensures a day, and looking to get my tube out in February.  

The January doctor appointment, which included a visit with the swallow therapist, and a PET/CT scan, involved a clean out of my sinus cavity, (which is an every appt, thing, likely for the rest of my life), an ecstatic session with the therapist who wants me to chew soft foods and gave me permission to schedule the tube removal. 

I had the PET scan that afternoon, and it is the one where you can't eat sugar or carbs for 24 hours before the scan and nothing except water for six hours before.  A radioactive sugar is injected into a vein and I have to wait quietly for an hour for the stuff to distribute itself over the body.  You can't  play with a phone, or read or do anything with repetitive motion because the sugar will collect there and could mask a problem, because the sugar also goes to where cancer cells are.  Then the scan is done.  It is similar to an MRI, but there isn't anything directly over your face.  It's more open and not so claustrophobic feeling.  And, thankfully, shorter.  

So, that brings us up to today.  My tube is really bothering me, my ears (which have been stuffed due to fluid behind my ear drums so I can hardly hear) are worse this week, but I have appointments made to fix them.  February 7th, I have my tube and port out. The 8th I consult with the ENT to have tubes put in my ears; the 12th I go to see the therapist again; and the 13th I have an eye appointment.  And, finally on the 18th, I see my chemo Dr. again.  I have clothes in the dryer, made lunch, and kept the fire going.  I have also spent the greater part of the day sitting on the couch.  There are parent teacher conferences tonight.  So, really my life is a mix of busyness and sitting around.  

Thanks for sticking by me.

(I may have to eventually not allow anonymous comments.  I am getting a large amount of comments that read like advertisements and thankfully most of them end up in the spam area.  If that happens, in order to comment you would have to have a google account.  It would just be a matter of having an email and password.  You don't need to make a blog.)