Tuesday, June 26, 2012

Barry 9 months

This isn't going to be a cancer report, although I did go to the doctor is Omaha to make sure the inside of my sinuses are healing normally.  Which they are, thank goodness and that is all I'm going to say about that.

I still want to have these photos of my grandsons on this blog, too.  This right now is the only record we have  of Barry's milestones.
Plus, I love my railroad track building skills.

As he turned 9 months, he was pulling himself up on furniture and just starting his cute little hitch along crawl, one knee up, one knee down.  He still crawls like that some and is going around furniture now.  He likes to see what is going on, and travels all over gramma's house, down the hall, into the kitchen.  If we shut up the rooms off the hall he just glares.  

What is so lovely about Barry is that he isn't a real go-getter like Zane.  Zane spent his time wandering around the house getting into things and making messes.  By this time Zane was walking.  Barry crawls over and picks up a toy and plays with it, or goes to see what Zane is doing and tries to play with him.  
That doesn't always work, since Barry can't really play, he just grabs.  
But, he can push cars and tractors and pickups around.  He is easily entertained with toys, and I can actually watch him just now, because he will play close by and doesn't need run after. 
Zane is learning to cope with Barry's attention, he went into the bathroom with his Tonka crane the other day so he could shut the door.

These next few photos were taken earlier in the month when the boys really discovered my box of farm stuff, and they played side-by-side for a very long time.  I just loved it. 

Here's another glimpse of our life, Jim trying out our new couch.  This is his favorite position in any couch. 

Here is Barry tasting the new couch.  Good thing I bought that stain-guard policy.

Trying to get a crawling photo is very hard, and for some reason even now if he sees this piece of fence he puts it in his mouth and crawls off. 

And here is the latest member of the "play with the springy door-stop club".
I always know where he is when I hear the twanging. 

Saturday, June 23, 2012

Cancer is an Ugly Word...

...so are surgery, tumor, chemotherapy and radiation.
There are also a big bunch of other words I don't like that now belong to me, like Stage IVB small-cell neuroendocrine tumor and 'very rare'.
There are some comforting things, however, the first one being that I am still alive with most of my faculties intact, and I am improving every day. 
Another thing is that Stage 4 for this kind of tumor means things like size and placement (like next to the  brain). 
Also, this tumor is rare because of where the crazy thing was.  Yes, there are nasal/sinus tumors, many of them. Neuroendocrine tumors are also a very common kind of cancer, it's just that you don't find those kind of tumors in the nasal/sinus area. 
It's like being a poster child.
I am also causing all the doctors involved to do a lot of research.  (I'm not sure I'm so unique on that one, it seems like cancer diagnosis and treatment cause a lot of effort in the research department.) 

However, there are several words that I do like, doctors who are called perfectionists, nerds, and careful. Words like, 'we expect you to be cured'.
My doctors do inspire our confidence.  They are kind, efficient and answer our questions before we ask them, that is a good thing. Oh, we still have plenty of questions and ask them, too, but they are more personal things, like how many problems will I have during treatment, and will I be the same again?

So, there are plans out there for treating this type of tumor, all our doctors are working together, making the plans to fit my circumstances.  
As far as I understand things at this time, the chemo and radiation will start at the same time.  The chemo is cisplatin based and is given to make any cancer cells left more vulnerable to the radiation. 

I don't know anything about cancer treatment, really, the nuts and bolts of the process, I mean.  I could have known more, since I know a few people who have had cancer.  But, I don't.  And anyway, some of that stuff changes so quickly, it may not have done me any good. 
Normally, radiation sites are marked onto the skin with some sort of indelible ink.  Thankfully, they don't think that is a very good choice for radiating on the face.  Also, because of the sensitive nature of a good deal of the stuff that resides in your head, they want to be able to be very precise and accurate so nothing really important is damaged.  Which means I have to be tied down, so I can't move.
Now, how they do that is really very interesting.  they make a mask out of a plasticky-feeling stuff that is molded for my face and shoulders and then marked with the radiation sites.
Since radiation is a 5-day a week for 6 weeks proposition, there are a lot of things prepared ahead of time so that every day, I will get put in position, zapped and go on my merry way.  
So, before the CT scan that day, which is one of the things they will use to figure out just where to aim, I lay on the radiation table, (with a nice warm blanket, why are doctor's offices so cold!?),with one efficient technician on either side, who molded a head rest under my head, and then they slapped the very warm mask over me, snapped it to the table with about 10 snaps, and molded it around my face.  Then they put wire over the incision sites so they would show up in the scan, whooshed me through and I was done.  I could see through the mask, (it's mesh), at least with one eye. The mask was smashed down so tight I didn't try too had to open the other one. It isn't uncomfortable, really, and I am reasonable enough to know that what has to be, just has to be done.

They colored the incision area for better viewing through the mask.
And the stuff didn't come off when I washed my hair this morning!

Soon, the 6-week mark will be here and the doctors want to start treatment as close to then as possible.  I can't decided if I want time to go quickly or slowly. Either way, the time will come and then I probably will want time to go quickly.  So, if the end of summer comes in a hurry, you can blame it on me.

I've been hoping I would be able to comb my hair into something looking like I was used to, but a huge healing incision on top of my head isn't helping. Clips in my hair, pull. So, I've finally decided to come out of hiding.  My latest housekeeper is back to her regular life, after helping us out for over a week, so we took some pictures at the airport.

On a special note, to all those who have sent cards and letters, and things, thank you very much, they are greatly appreciated.

Tuesday, June 19, 2012

Recovery Is A Lot Harder Than It Looks

Thanks to all those with suggestions for the sticky hair problem.  I decided to take my mom's advice, which was something to the effect of, "What are you worrying about your hair for anyway, leave it alone!"
So, I am.  I think in my exuberance to get back to 'normal', we spent more time and effort on it than we should have.  Yes, there is still goo up there. Yes, it looks pretty greasy and I can't do much with it.  So, far I just comb it into a braid on the side.  The heaviness of having it up with a clip in is a bit much yet.  
It seemed like the scrubbing and showering were doing more harm than good, when the whole idea is to let my head heal.  
So, vanity has to go out the window for a while.  
It is a rather good thing our eyes are for looking out at other people rather than at ourselves.
And let that be a lesson to ya! 

At 4:00 this morning, I woke up feeling different.  I was calm in the darkness and really awake.  I felt more like ME than I had for many a day.  Jim woke and mumbled, "it's not time for a pain pill".  It was past time, but I didn't want one.  I didn't have a headache, and I wanted to enjoy the drug free sensation a while longer.  
I did go back to sleep, but woke again, and STILL no headache, but my keepers ...erm... family insisted a take one as a precaution at breakfast, which I did, and had a lovely morning nap.  After a had a very nice lot of lovely company, I took another, since being up very often gives me a headache and another rest.  
So, here I am at the end of a more eventful day than usual, spending an unusual few minutes at the computer, after which I will lie down, not to test this headache free period too far.  
I feel better, I feel like I've turned a corner.
However, when feeling this good there is too much temptation to do too much. 

So, That's all Folks! 

By, the way the photo at the top is titled
"Wildflowers by the Yellow Wall"

Friday, June 15, 2012

Hair Goo

Once upon a time, there was a product on the market called Dippity Do, and when I just looked it up on google, you might still be able to buy it.  Anyway, there really are a number of hair gel products on the market these days, but I remember Mom sticking her comb in the Dippity Do jar before she slicked our hair down when combing it.  It probably helped our thin fly-away hair stay out of our faces.  
One thing that does not work well for hair gel, or perhaps it works too well, is the antibiotic ointment used on my incision.  We are having an awful time getting it washed out. The doctors said diluted hydrogen peroxide would work, but the way that is going, I'm still going to have a sticky problem for another couple of weeks.  It helps, but a little at a time.
So, if anyone out there has some idea of what might cut this Vaseline type stuff out of my hair, bearing in mind that I have this incision and a tender head, I'd like some ideas.  

Wednesday, June 13, 2012

Getting Ready for a Marathon

I have a lot of things on my mind today, which means this post will either be long and take a while or I will get tired, and much less information will be posted.
Today Bonita comes to help out.
Yesterday was my first post-op appointment in Omaha.  The incision healed well, the staples were taken out and now I can think about doing something with my hair expect a braid down the side.  Everything seems to be proceeding normally.  The forehead part is healing down well and the inside as far as they can see is healing like it supposed to, also. 
I don't get as tired as I did at first, but now I am on a "do a little more activity every day" mode, but carefully.

Several of my friends are going in for fitness these days, running, biking, and signing up for runs and marathons.
So, I'm going to join in too.  I'm getting ready for a marathon that in six weeks or so is going to do things to my body I can't even realize right now.  I'm not sure I even want to imagine.  In some ways getting ready for cancer treatment is getting ready for a big race.  I have to eat well, with extra protein, I have to make progress every day with my physical activity.  I need to get as well as I can get before treatment starts so I can feel as well as I can going into it.
So, right now, everything is on track.  I will have my chemo and radiation in Kearney after all.  What a help that will be for the toll on my body! I see the medical and radiation oncologists next week.  The week after will be follow up appointments again with both surgeons this time. And the next week I go see the dental oncologist for dental maintenance and protection.  
Because, they have extended the realm of radiation larger than at first.  They plan to irradiate the lymph nodes in my neck.  So, they are talking about quite a large area, from my forehead, down to my collar bone, including the neck.  The main side effects besides the usual ones of radiation, is the frontal lobes of the brain when radiated causes fatigue, which could last up to a year since radiation does not stop working when treatment does.  
As I understand it now, the radiation and chemo will take place at the same time.  We'll know a lot more once we visit with the oncology doctors 
In about six weeks from surgery.  No dragging feet, just keep on marching from step to step.

I really appreciate everyone's confidence in me and my ability to keep positive.  You people are going to make it very hard for me to wallow around in self pity and complain.  

Do I worry about what if they didn't get it all? What if it comes back? What if in spite of everything that is done, and  what everybody says, it comes back?  I do, a little, a very little.  I can't see wasting what energy I have worrying about things that might never happen.  And if they do, well we'll all cross that bridge when we come to it. 
I might still be a bit in the 'denial' mode.  But, I do know that I can accept most things as they come along.  Faith and Trust go a long way in helping me be who I am.  

Blogs can get very boring sometimes without any photos, and these were taken by the waiting party in the surgery waiting room during surgery.  It looks rather like they were having a party in there.   

It was so nice for Jim and Lynette to have helping watchers. 

They now have electronic boards in the waiting room so family can see the progress. I'm the first one.

And a nice little note for my room!

Sunday, June 10, 2012

Settling In

I have had some eventful uneventful days. Having a housekeeper and daughter suddenly decide to paint the paneling, I've had some lovely long naps in my bedroom instead of the living room. So, now we have some new color in the living room, and my daughter isn't wanting to paint again for a very long time.

I am continuing to sit, eat very nice things people send in (thankyewverymuch) and have naps.  I am slowly learning to type on this laptop, which is a very annoying project.  If I do too much of anything including have visitors and talk on the phone, which I LOVE, I get too tired. PLEASE don't stop calling and visiting, I'll just nap later, or I already have had a nap.

So, today, I had three naps, 6 visitors, spread out between naps, three meals, and two snacks.  I'll have one more snack with the evening meds.

I am feeling pretty good right now.  Everyone comes in and says how GOOD I look, however, the better I feel the more I do, and then I will feel worse tomorrow.  I don't want to spend too much time typing here either, because it is tiring.

It is amazing how tired I can get reading a few pages in a book, or reading on the computer.  I had no idea it took so many muscles in my forehead to focus my eyes.  I read my morning comics, if I'm up to it. I look a little at facebook, and every couple of days look at my email.  I have to decide sometimes what are the most important things to do, because I can't do all of these even little things all the time or all at one time.

I'm not finding it very easy to be a couch potato.  I'm not finding it easy to sit down and watch other people do my work.  Next, on my list is to not let things like that stress me out.

Friday, June 8, 2012

A Wedding Story

I had this post ready for several months to celebrate this day.  In the light of recent events, it is more precious than ever.

Twenty-five years ago, we were married.  
I'm glad the the story continues and gets better every year. 

Thursday, June 7, 2012

Dear Dear Friends,

I am very, very, very, (insert appropriate number of verys), thankful for all those who have checked this blog the last few days.  It was such a pleasant thought to think of all those people thinking about me.  And then at the end of the day to have the comments to listen to as I settled down for night in the hospital.  

Being so ill in the hospital was rather a surreal experience 
 I was generally wakeful between 1 and 3 am and at that time the PCU floor was very quiet.  I could look out the window on one side of an open ended box, and see the cool white lights that matched mine in the other sides of the box, for a few floors up and down.  It felt a bit like floating in space with no time or dimension.

So, dear ones, Stage two on the journey begins.  Surgery is over, recovery begins. 
Recovery is boring.  It means parking my carcass on the couch and leaving it there. It does not mean I can get up every little bit and put something away and sit back down.  I tried that the first day and crashed and burned painfully.  So, today and yesterday, here I am sitting on the couch, napping, eating, pill popping, relatively pain free. 
People are working around me, and I'm trying not to feel guilty. I feel like I should be doing something.
Anyway, I am ready to go back to regular blog programming.  I'll still keep this updated oftener than usual, just not every day.
Tomorrow is a very special day in my world, blogging or otherwise.  So, we are going to celebrate our 25th anniversary while I sit on my very nice couch and recover.  

And I go the the doctor on Tuesday, hopefully to have the staples removed from my head then

Wednesday, June 6, 2012

I Can't Smell Anymore...

There was a photo on someone's blog this spring with a little girl joyfully lifting up her face to the sunshine and lilacs.

I didn't smell the lilacs this year.

With all the lovely and beautiful things that bless my life, smell won't be one of them, not ever again.

You don't think about how much you use it until you lose it.

I remember wallking by the irises this spring and thinking, "I don't smell those."

But I thought I would, I really did, I thought this thing in my head would someday succomb to antibiotics and my life would be back to "normal" again.

But it won't.
I won't smell flowers again.
I won't smell dirty diapers again.
I won't smell the fresh "after the rain" smell.
I won't smell that lovely smell of wood smoke, or burning in the kitchen, or skunks, or natural gas.

Once the olfactory nerve is gone--it's gone.

But I have a lot of other things.

I can see, I can hear, I can live, I have family, I have friends.

I can feel the warmth of the sun on my face and I can remember...
I can remember that I loved to smell.

And I didn't take that for granted.

Tuesday, June 5, 2012

Home again after a big week

If yesterday was the valley, today was the mountain top on this journey.  Shelley was released from the hospital this morning, and tolerated the three hour trip home quite nicely.  When I talked to them a few minutes ago, Shelley was sitting on the couch talking to her friend Juli, who has arrived to help out.  Juli brought Lynette home also.  Shelley also had a nice bath, and they attempted to deal with her hair.  She spent the last week in a hospital, not a spa or a salon!  The big incision, the tangles, the greasy ointments, the days of lying in bed all took their toll, but her hairdressers were working on it.  Pain pills and naps are still important features of life, but really everything seems to be going as it should.

I fear I may soon be losing my position as guest blogger, but as Shelley says, it is harder to think about blogging and computer work when you have sore eyes.  I think you will very soon be seeing a post from Shelley herself, though.

Someone has set up a "Google Calendar" for any who wish to help in any way, with meals, housework, companionship, whatever your talent is!  I'll paste the link below.  I tried it myself and got it to work, which is a minor miracle considering my limited computer skills.  So, I'm hoping it will work for anyone else who wants to access it.


Monday, June 4, 2012

The roller coaster of recovery

It seems like recovery never takes a nice gradual upward incline, but rather it's more like a roller coaster with a general upward incline.  Today was one of the valley days on the roller coaster of recovery.  This morning they took out the nasal packing, which was a very painful process.  Guess it was nearly unbelievable all that was up there in her head.  Shelley's head is now having to adjust to those recently operated areas not being packed tight, and it is a painful process, and the pain got ahead of the pain pills.  She wasn't able to force herself to eat much today either.

They've been saying today that she could go home tomorrow, but as difficult as today was, there is a possibility that it might be postponed.  It's a three hour trip home, and that in itself is a major undertaking for someone with a sore head!  Shelley's good friend Juli is going to come and help out when Shelley does get home, and that will be so, so appreciated.

So, that's the news for today.  It's anyone's guess whether tomorrow night will find Shelley in Omaha or in Kearney.  As nice as it is to go home, there's a certain security about being in the hospital when you're not feeling well.

Sunday, June 3, 2012

Post op day #4

Today started out for Shelley sort of on the "draggy" side, but as the day wore on, she really perked up.  She had lots of company and was able to enjoy that quite a bit.  Now this evening she is really tired, and definitely ready for a good night's sleep.  Today she ate more than ever before--soup, potatoes, fish, and such. It still isn't all that thrilling for her to eat, but she's doing a good job of it, especially with Jim's urging.  They took some walks and sat out in the breezeway.

Tomorrow will be an eventful day because the nasal packing and the hated nasogastric tube will be removed.  That's a big and definite step toward recovery and going home.  The doctors haven't made any definite proclamations about what day she might be leaving. Jim is going to make a quick trip back to Kearney tomorrow.  Seems his employees want to be paid, and stuff like that. 

Good night, and we'll talk again tomorrow night!

Saturday, June 2, 2012

A very, very good day

When Dorothy and I were together last night we had plans to write a really exciting, riveting blog entry, but as it got later and later, and Shelley seemed sicker and sicker, and we got more and more busy and tired, our literary ambitions kind of fell by the wayside.  I'm afraid tonight's entry will be rather utilitarian also.  It seems with our jobs, we so often work weekends!! We're back in Wisconsin now, gearing up for tomorrow, and reflecting on today.

Boring or not, it is all good news today.  Shelley was up in the chair, took a little walk in the hall, and walked back and forth to the bathroom.  Quite a few visitors came today, including Eldora the seeing eye dog (oh yes, Kayde came with her too..)  Shelley was able to genuinely enjoy her visitors.  Eating is going well--chicken noodle soup, applesauce, etc., and the feeding tube hangs there unused.  She'll be really happy when that thing goes.  She has been switched to oral pain medicine now also.  All those things are really good signs.  According to Jim, it wasn't a very good day, but a very, very good day!

Good night all.  May you have a good tomorrow.

A better day

We want to quickly get the news out that today is a much better day for Shelley (and Jim!)  Already in the night Shelley was showing signs of perking up, and while she's still sick, weak, and uncomfortable, she is MUCH better.  She's alert and conversing, although her throat hurts her a lot. This morning they took the lumbar drain out, and the nasal packing is scheduled to be removed on Monday.  The goals for activity today are to sit up in the  chair and perhaps take a short walk. Isn't it amazing how we're all linked together somehow?  When Shelley feels better, we all feel better!

Friday, June 1, 2012

Reality hits....

Well folks, I think the harsh realities of a huge surgery set in today.  Shelley has not had nearly as good a day as yesterday.  Yesterday was probably almost too good to be true, but not too unusual for the first post op day.  Shelley did get moved out of ICU today, sat in the recliner for an hour, and took a few steps from bed to wheelchair for the move.  These are all positive forward steps, but she has been overwhelmingly exhausted, and not nearly as perky.  Even mumbling or framing a word or two is a real chore for her. She's had some low blood sugar issues today, too...indicating her body has had a pretty major stress.  Her main surgeon saw her this morning, and indicated there would be rough days ahead, but by time he gets back from his weekend away, she will likely to be making a turnaround.   That's a good goal to look forward to, but like Jim says...you can keep telling yourself this is all normal, but it's pretty hard to believe it!  He will be staying the night in her room again, and hopefully he can give a more progressive progress report tomorrow sometime!

Some were wishing the address of the hospital:  It is Methodist Hospital, 8303 Dodge St., Omaha NE  68114.  Jim and Shelley's home address:  300 Northview Dr., Kearney NE  68847

Believe it or not, your guest writer is a guest of her sister tonight!  It's nice to be together when we feel far away from the ones we love. So....tonight this is being written by the Minnesota sister in law with the Wisconsin sister in law looking over her shoulder.  We both agree that our one and only sister in law is a very special lady.  And her husband is a very special man!