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.)

Adjusting

 

    It's been a long time since anything has been posted here so if anyone is wondering we are all still among the living. In fact, mom is doing much better. She has been sleeping less during the day and doing some laundry along with other small chores. Mom even gets up to make me breakfast in the morning which is quite nice. No one can make pancakes quite like mom. :) She also has gotten a new swallow therapist who specializes in radiation cases. The therapist is in Omaha but the experience of the therapist greatly outweighs the drive. Mom's only complaint is that she is finding it a bit hard to adjust back to normal life, which is why she hasn't been blogging. In other news, Lorene got a new job at a nursing home which she loves and Zane turns four at the end of the month.

A lot changes in four years.

-Lynette

P.S. Mom's latest MRI came back clean! :)

Barry--Summer 2012

Barry doesn't have very many photos taken by me, that summer of 2012.  I spent that summer in cancer treatments, chemo and radiation.  

These photos are before treatment started.

I wish there were more. 

Look at those blue eyes. 

Walking now, later in the summer. 

Learning to Swallow

I haven't been in the mood to type blog posts lately.  It has been more fun to sleep and read.  And I have been trying to get office work done, a little every day. I just can't get enthused about writing just now, but I do want to update one in a while, but it may not be very often.  

 It's been pretty well accepted that I would have to learn to swallow all over again, and it seemed like now was the time since I was having mucus that I needed to swallow and that wasn't happening either. So, I went to a speech therapist Friday and a dear lady named Edna has me swallow water which I coughed up and she tried thickened liquid which I promptly threw up.  I gag so easily She then gave me various exercises to do which include howling like a coyote. saying "ah" several times. Those two exercises are done while squeezing my hands together.  The pressure of the hands somehow gives more "oomph" to the inside, too. I have to say 10 words that start with "g" or "k", blow a party favor, swallow three times with my tongue between my teeth, and say, "Please go get me a good magazine". These are for strengthening the tongue and throat muscles.  Believe it or not the howling one is the easiest, even though it is pretty funny to be howling around.  

Then on Monday I had a modified Barium swallow where I swallowed various thickness of liquids and watch the x-ray as it goes down.  Jim watched too, and they set it up so I could see it and evaluate it.  The water wants to get into the windpipe but comes back up so quickly to be swallowed so there are no worries there and the applesauce went down nicely, too.  It hurts a bit, so does the water, but not as bad.  In fact, it might be a bit early for all this swallowing since my throat is still sore, but I will try to keep plugging on.  I'm starting with a little applesauce and water every day. 

This afternoon I had therapy in the new outpatient physical therapy room at the hospital. The new area is just corridors and rooms and it is hard to find where things are.  I didn't remember where it was, and I'm not sure I could find it again, but mom says she can.  She just gave me some more things to say, some swabs to put in the freezer to stimulate my tongue.  I hope I'm not jumping the gun too much, since my throat still hurts.  I wish it would get healed up.   So Friday, I have an appointment with the radiation dr. and another session with the therapist.  So, things are just going to be marching on for awhile.  Next week, I go to Omaha on Tues.  They want to get an MRI.

It takes a lot longer to get all healed up than a body thinks.

Feeling Better

It's been a long time again since updating this blog.  But, I've been enjoying myself with a little crocheting, reading, (which I haven't done for ages) and napping.  And, I've been not enjoying myself with some extra office work that requires phone calling and online bother.  Jim has to do some of my phone calling but I am getting so if I talk slowly and keep my mouth wet I can talk for awhile.  It still hurts to talk too long. Talking isn't fun yet, though.

I had a doctor's appointment this morning to see my oncology doctor and had blood taken and a chest x-ray.  I was hoping they could take the blood from the port and flush it since it is supposed to be flushed about once a month.  But, it didn't work as usual.  I'm ready to have the thing out and forget about it.  It has had to have some fancy medicine put in every time to dissolve some web thing that covers the tube and doesn't let the blood come out.  So, they did that again and we talked to our doctor about having the port out since it doesn't work.  

We asked the same question of our Omaha Doctor last week, and he was of the mind to wait to see if we would want to use it again, but our doctor today said if there was treatment done again it would be totally different and we might not need a port at all.  So, he's in favor of having it out after I have my MRI which should be done in a couple of weeks in Omaha. 

 I was supposed to have the MRI done this time but, I'm still producing plenty of mucus from my sinuses so he wanted to wait.  That's a good thing.  It is hard to lie flat for that long with mucus in your head.  I'm not sure I'll be ready in two weeks either. 

I am getting better for sure, but it is slow going and some times hard to believe is it happening at all.   I know I am though, because I am getting more strength all the time.  It is hard to know what to start thinking about first.  Mostly now, it is office work and it is hard to think about all the things I used to do so effortlessly and I need to be starting some of them up.  

I'm not sure what I should start on first.

Time For Another Post

I feel like it is time to be writing another blog post.  The last few days when I've been thinking about it, an overwhelming desire for a nap has overtaken me.  And that is what happens instead.  This weekend is my "low" point for my last chemo.  The last two times I have been in the hospital with really low while blood cell counts and a fever during this time.  I've been having my blood drawn every few days so see how my body is reacting to the shot that was supposed to encourage my body to make lots of white blood cells.  The first report was very good, 8.5, on Monday, but yesterday's was 2.2.  I was in the hospital with a fever last time at that number.  I was heading for a bad night last night, cold and coughing (mucus), sometimes I throw up with that (pardon the details), so after a 11:30 bed change, I slept from midnight until 2 am, and from then to 6 am.  Wow, no waking up in the middles.  That is totally amazing and it may be the first time it has happened since I got sick.  I didn't sleep much the night before because I am having breathing problems with my sinuses, and I really don't like to breathe through my mouth.  It makes it SO dry and uncomfortable in my mouth.  I need to keep saying to myself, this is the low, we are still fighting chemo off.  It really isn't the upward swing quite yet.
I really need to use what energy I have doing business work for Jim.  That really does come first.  Except today is Saturday, so it is coming second.

It was so very nice of Bonita to take a little picture of our home and life, but one thing she didn't do is my love of yarn.  For those people that really know me and how many miles of yarn I have made into things will be glad to know I picked up a crochet hook two days ago, and I plan to slowly work on an afghan.  I have three rows finished.  I hope to do a little every day, even less than one row if it
has to be.
But office work will be before that today,

Now office work is done for awhile and I am reminded that I'm still fighting mucus, and it is winning today.  I hope it will let me take a nap.

Shelley, The Person

Here's the guestwiter (and I really am a guest at this time!) slipping into the author's chair again, and happily it's not because Shelley is too sick to write. Many of the people who read this blog know Shelley very, very well, but through the last couple months this blog has collected quite a few people who don't actually know Shelley.   Here are a few random images that may express who Shelley "is."

This admonition on the "to do" list board on the refrigerator is "pure Shelley." It has been on the board for the last couple months, put there before Shelley knew that she would be among the sick or the weak. 

Shelley is a lover of great literature, and collects and remembers special quotes from what she's read.  I found this little book that she put together quite a while ago. 

Too bad every single page couldn't be included.  

Her decorating in honor of her Deere husband.

A real homemaker, as is evidenced by the well stocked larder.

Some of what you see here was done this year by helpful friends and family.

Some people keep a Bible on the coffee table as decoration, but in this household it's more of a utility.  Everyone is enjoying Grandpa Kleeb's old giant print Bible. 

This is the brick house that has been home for them most of their married years. It's not quite in town, and it's not quite out of town.

We get to see this cheery little sprite go off to school every morning.

Sometimes she leaves notes behind

that leave us with watery eyes

and squishy hearts.

It's a day brightener when the grandboys stop by

and their parents.

People often ask how Jim is doing.....
Pretty well, I'd say.
This seems to be part of his therapy

You know raising chickens is the rising trend, and it has hit this household too.
I'm glad to consign that to the "been there done that" status,
but Jim loves those chickens.  They somewhat earn their keep now.

Probably don't need a picture of this, but if you ever do the naso/sinus surgery and treatment thing, you will need box after box of tissues.  Also, a clipboard for writing notes will come in handy when your voice is zapped by the treatments.

This is the morning view from their house, looking to the east.  It's the sunrise, the beginning of a new day.  Just like with Shelley, the night time of treatment is receding, and there are hints of light peeking through.

"Favor is deceitful and beauty is vain, but a woman that feareth the Lord, she shall be praised."



Radiation and Chemotherapy Are Finished!

I can hardly believe it!!  The title says it all.  Of course, radiation has been finished for a few weeks now, but chemo was over yesterday so my "treatment" is done.  Of course, there will be a lot of things done to me in the next months and years checking me out and over, but this stage is done.  The healing can begin in earnest.  This time it should be just chemo healing without the complications of radiation involved.  

I am SO tired right now, but it is so hard to sleep with my mouth as dry as it is because it just gets drier and hurts more. Last night, I didn't have much trouble, so I'm hoping for the same tonight and just hanging in here, tired or not, for now.  

These photos are all taken on the "Last Day".

For some unknown reason, my right arm was all swollen so I had a doppler ultrasound done on it, to see if there was a blood clot, but there wasn't. So, they next wanted to check the port catheter with dye, to make sure it was hooked up properly, but we had to wait an hour for that so....

..... the ultrasound people wrapped me up well to meet the Cancer Center people and squeezed the chemo treatment in quickly before I went to radiology for the dye scan. 

In, for chemo.

And out again, NO MORE CHEMO!!

YAY!!!!

By, the way, there is nothing wrong with the port, everything is fine, and my arm swelling is starting to reduce.  

I did go into the cancer center today to have the shot that stimulates the body to make lots of white blood cells. The second and third rounds of chemo have landed me in the hospital, with my white blood count going nearly to the bottom, almost to zero.  The the body can't heal and I get sores I in my mouth.  I couldn't take the shot the other times because it doesn't work while radiation is going on, but they are hoping it will do the trick this time and not only keep me out of the hospital, but also keep me the healing.  The body doesn't heal without the white blood cells. 

It sounds so good that this stage is done, but it is also the beginning of another stage, the recovery stage, which will take its time, too. I'm anxious to see progress made, and I'm sure everyone else is, too, but it will be slow going, I'm afraid.   

It isn't over, yet, folks, over the next couple of weeks, I will being have blood drawn to make sure my red blood counts are fine, too. If they go down, I could go into the hospital again. I hope I don't. 

Time to start climbing back out!

The Last Round of Chemo Begins

This sounds all well and good, and it is all well and good, since the last of any bad thing IS good.
They keep telling me, "Remember, as hard as this is on your body, is it just as hard on the cancer."  It is very hard for me to be remembering that a lot of times.
I'm sitting here, almost finished with my very long chemo day as they are flushing fluid out to protect my kidneys from today's Cisplatin.  I have forgotten, that flushing fluid out makes my mouth drier than usual, so that is pretty uncomfortable.   It is also hard to think about facing another three weeks of extra dry mouth and possibly more mouth sores, since those are both side effects of my chemo.
I'm also going to be given the shot on Thurs, that is supposed to produce huge amounts of white blood cells.  This is to keep me out of the hospital with low white blood cell counts. however, if the red blood cell count goes very low, I will end up in the hospital because of that.  But, it would only be low enough that I would need to have blood given me, and it shouldn't be for nearly as long.  I was in for a week the other two times!!

Tomorrow are my two short days of Chemo, and since I didn't sleep very well last night, I'm ready for a nap.