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. 

Home Again, Home Again, Jiggity Jog

And hopefully to stay this time.  

Aren't these pretty!  Some sort of orchid they have such a delicate flower and pretty color.  We are enjoying them when we are home.  

And, yes I am still facing one more round of chemo, which does its job oh, so very well on my fast growing white blood cells, causing a fever, and super-susceptibility to infection and a whole bunch of other things that make it much more desirable for me to be in the hospital for a week instead of at home.  

The only thing that will make it different this time, is a shot that can be taken after chemo to cause the body to super produce white blood cells and prevent all this from happening.  Otherwise, I just might as well book my bed on the fourth floor south.  However, he did very quietly say, "or reduce your stay." 

Good Grief!! It is ridiculous to spend a week at a the time in the hospital!  And even more so to do it twice!

I hate to think of going in a third time!!  It is awful to feel as sick as I did to get the ball rolling in that direction.  And, this time, I really did get sick.  The white blood cells counts did not want to come up and rather stayed down in no man's land for about three days.  And then the hemoglobin didn't want to cooperate either.  

The reason this shot wasn't done before, is that is cannot be done during radiation.  It can only be used when no radiation is going on.  

I'm feeling really better these days,  most of my mouth sores are healing up.  The mucus is much less of a problem, and dry mouth is a big one now, too.  I'm ready to have a little nap again.  

You know, I think I might actually live through this.  I just hope the next chemo isn't so bad.  I've never had one this far out from radiation. 

Hospital Round 2

Some of you have probably heard that I have taken up residence in the hospital again.  Chemo and radiation and I just don't go well together.  I'm not exactly sure if the the "nater" business which means low white blood counts (I think), has to do with one or the other or both, but it means hitting bottom. Perhaps I'll have more complete information later.  Any way, it is neutropena fever, or however it is spelled, caused by the hitting bottom in the blood cell counts.  My hemoglobin went way down yesterday too, so they gave me a couple units of blood, then my fever went up after that, which isn't a real good thing, since it indicates the donor may have had an infection and that means drawing more of my blood for testing.

I am having problems with dry mouth and healing with my tongue and mouth. My tongue bleeding often. Thank goodness Mom is here so Jim can get some work done.  But, I'm feeling pretty sorry for myself when he isn't, though!

A Beautiful Sunday

It isn't very often that I have a post so recently posted as this!

We had our lunch this noon on the deck.  The cooler temperatures we've been having and the sunny weather, are making it really nice to enjoy fall.  And it is fall, isn't it?  It's close enough on the calendar, really, and the temperatures say it is.  

With no breeze, the other's ate their BLT's at the table and I soaked up the sun in my hat.  It was perfect weather to be out in.  

I've been sleeping a little better, too.  I actually slept 5 hours straight last night, and I don't know if I've done that since I've had surgery!

Things are changing for the better, my mouth isn't so sore as it once was.  There is still soreness underneath it all, which is baffling.  I wonder how long it will take before it actually heals?

I'm afraid the answer is going to be "after the next round of chemo".  I haven't asked on that one yet.  And I could.  It seems like I've spent all my time hand in glove with the radiation doctor.  His team with  my favorite, Dr. Lorri, have been the ones directing my care.  Now, it is time to take up the the finishing team with the chemo care doctors.

I've been having a little trouble with my left eye.  It has always been watery since it should be producing more tears than it is. Which sounds really funny, but I don't get it all now, but it keeps working on producing tears anyway.  However, these last couple of days it isn't watery anymore but globby green.  It is NOT pinkeye, the white of the eye is not pink.  So, we called the Dr. tonight.  (Why is it always after hours?) My temperature is slightly elevated, so I could go into the ER, but for goodness sakes!!!, haven't I already been there enough times! Since it isn't getting better these couple of days, the diagnosis is to keep a watch on my temperature and see the Dr. in the morning.  However, IF my temp goes up, I'll be trotting in to the ER before morning.  I hope not, of course, but what will be, will be.  

I feel a nap coming on. 

Another Few Days

I'm feeling awake for a few minutes so I should try to get some lines down so people can know how it is going over here.  I have been so terribly tired.  I have been forgetting that I finished radiation on Friday  and went right into chemo on Monday so I'm still dealing with some radiation side effects.  I'm not really sure what all to expect with these.  The mucus actually seems to be a lessening problem, yet if my mouth gets at all dry, it hurts very badly.   So, right now, I am sleeping in the day, managing my medicines both day and night and not sleeping in the night.  That's not entirely true, of course, I am sleeping some at night, but not as much as I wish as was.  

I really feel like I'm just feeling my way through a fog, not really knowing what to expect next, just dealing with the complications and  extras as they come.  I do believe there is some healing going on, Maybe, just maybe,a little less mouth pain going on here.  A little office work being done.

Mom is going to be gone a few days next week, and we are looking at filler's in.  I really should be learning to manage more on my own, but I am wondering how tired I am going to be by the middle of next week.  

I'm also thinking I might be heading into the "I'm too tired to do anything, but I'm a little bored" stage, too.   Lynette got me a whole bunch of books on tape, but I think I would still rather be doing something.

But, I am forgetting, and I need to remember.  They told me it would take as least as long to come back up as it went down, which was 7 weeks of radiation, plus a lost week in the hospital....  It's going to take a while, and a lot of patience.  

A Quick Catch-Up

I am so tired after finishing this last round of chemo, that I can just tell you some of the facts.  I finished Day 3 of Cycle 3 this morning.  I will have one more cycle left.  I slept most of the day and I'm thinking for the next few days, that is all I am going to do.  

If rest means healing, I guess I better do it.  And we'll see what I'm like when I resurface in a few days.

The Last One

Well, It really was the last one, and Jim of course wanted to bring my mask on home.  My gut feeling is to burn it.  I don't want to keep it around forever, but my dear husband has friends that will dearly love to really get some good looks at it, with Jim to explain where the first markings were, and where they did the 2nd and 3rd boosts.

I am just very, very thankful, that this mask sitting here in my hallway means I really have finished the last radiation treatment.

I feel weepy, exhausted, relieved, unbelieving.  I feel like would like to sleep for two weeks. 

After that week in the hospital with no radiation, I was already starting to think I felt changes for the better in radiation side-effects.  I'm hoping I can tell a difference with all the steroids and extra meds they are giving me for chemo during that week.

I truly hope that this is the hardest thing physically I ever have to do in my life.  

And even if as they say, really, I'm only half done, surely the half going up, the recovery part, will be more encouraging.  

I think I'll celebrate by having a nap.

Just One More

Dear Peoples,

I've been putting off writing this post.  Just saying the words, "I've started the boost, with 5 days left, I've started the second boost, I have 3 days left", seems a bit scary.  What if I can't do that last day?

Because tomorrow really is that last day.  The very last day of treatment.  One more day. After that, no more days of radiation.  

I did well today and yesterday, too, they were long days with extra pictures being taken.  The pictures taken today goofed up and had to be re-taken, but I was surprisingly calm since they let me a a little mask-free break.  It is harder to want to get on the table, but we are learning a system, thank goodness , the biggest one is dealing with the mucus, which I can suction all out, and then think of things or have loud music going. I feel a new determination to GET THIS DONE, and it will be over.  Then there will be better days ahead, slowly better, but better.  

Especially since I start chemo again on Monday.  And chemo with it's steroids has always made me feel better.  

So, I can lie around this weekend being tired and having lots of naps, and Jim can pack for my long day of chemo, unless I feel like it, then I can do it.  I seem to be quite content sitting around all day doing nothing at chemo, but we really should do some office work. There really isn't much going on for me in chemo, just waiting around mainly for the fluid to go in all day the first day, so the second days of a couple hours each, seem really short and quick.

Anyway, aren't these some truly beautiful flowers?  I've been lucky to get some beautiful bouquets and have thoroughly enjoyed them.  It is fun to see the color combinations, the choices of colors, the different kinds of flowers.  The floral companies arrange them so well, and what fun it must be to choose the colors to use.

I really appreciate those who have sent cards and flowers and letters and comments, to cheer up my days and to remind me that someone is remembering me.  

Thank you so much dear ones.   

Love, Shelley

The Last Child At Home First Day of School Picture

The first day of school comes to all kids, whether they want it to or not. I think she was ready this year. At least for a while until things get overwhelming again.  She's off for the weekend in a special place that puts school work into a less important perspective.  And, it isn't the social life, either.  

So, off she goes into her junior year of high school with new ideas, and new goals, Old friends, and maybe some new ones.  

With a mother who staggers out of the bathroom to say good-bye as she is getting ready for radiation, again.  

Luckily, school started before I went into the hospital so I got my school day photo on the day, not that it really matters so much.

We are glad for some semblance of normal life.

Flowers in the Hospital

I'm not sleeping well tonight. I'm still having a hard time with the mucus and Robitussin issue.  No Robitussin and I can't sleep because it is too thick and bothering me and with Robitussin, too thin and I'm suctioning every 20 minutes and can't sleep, either.  No wonder I'm so tired in the day.

I was going to title this post something about being sleepy, but then I found this photo of the flowers I got from Delton and Renee in the hospital, which we have enjoyed very much, thank you.  But, what this photo also shows in the redness on my neck, the "sunburn" from the radiation that in these photos is doing its best to break down the skin.  It was sore and required a lot of attention with salve, but here we are over a week later and while my neck is still very red, most of the scaly and sore areas are gone in the side creases and it is looking very good.  Most of the inside sores in my mouth healed up while I was in the hospital too, which is a very good thing, and I don't think I'm going to have enough  radiation in my last "boost" too get very many back.

The "Boost" which is the last of the radiation series, started Tues to make up the one day I missed. So, Tuesday after Labor Day will be the last day of the 5 day boost, done in a more concentrated area on Tues, which will also see us with the oncology doctor who hopefully can complete the  plan for the chemo, but the main thing is no more chemo until radiation is complete and there is a good chance radiation will be done next week.                                                                                                                                                   

And may all of you enjoy the very special days coming up.  

The Multi-Million Dollar Machine

All these ghost, guest, designated authors and other such titles given to contributors on this blog, we have one more really ghosty-writer in the background that has yet to to mentioned.  

He is the one that is going to tell me what is happening while I am strapped here in the radiation room during radiation.

Jim of course, who is the one who plays a very important part in my whole treatment and recovery program and really doesn't get the recognition he deserves.  He is so interested in the how and why-fors of all this stuff works, and some of it I would rather not know.   But, that isn't the reason he is so great.  He's kept track of all my feeding and medicine and just plain ME for so long. He comes as often as he can to radiation, he has decided to be my first line support team, and I couldn't manage without him.  He has been just the greatest support ever.

When I walk into the radiation room I see this,   It isn't a very big room, but this machine fills it.  

Here is a better picture of the whole set-up which the radiation table on it's base with my mask on the floor, the blue form on the table is where I put my head and then I usually get a nice warm blankie, it's freezing in there. 

After the mask is snapped to the table, green lasers are used to line up the table under the machine.  The table I am on moved back and forth on the base and around the while circle underneath the machine. You can see the green light over the top of my nose in the photo below and another one would cross in a 90 degree angle, which isn't showing in the picture.  

On either side of my head here are flat plates that move to form a box sort of thing around my head that takes the CT scan every day, before that days treatment.  After the table is put into position under the machine, (you see my head closer to the screen here) and the entire body of the machine is rotated around my head. (looking at the first photo, it is all the light gray part of the machine.)

In the Control Room just outside the door the operator watches the CT scan, (far right lower computer) make the slight positioning adjustments of the rays, for that days treatment and then watches me during the radiation procedure.  I am in there by myself, but they are watching closely in case I need something.  

The radiation room has 5ft. thick concrete walls.

Mondays are always the worst days of radiation treatment for me.  After having a couple days off, it is rather depressing to go in and start another round.  And this Monday after having a whole week off, it was worse yet. I didn't feel like I was in control of the mucus in my throat, (I take the crazy suction machine with me, because it is a little cleaner than other methods of getting loads of mucus from the throat and mouth area), I had seen the doctor instead of the PA and he made me more nervous yet.   So, it took longer this time to calm my nerves to get on the table and breath normally.  I really hate to admit this.  On the outside chance than anyone I know will have to undergo mouth or neck cancer, I wanted to be able to breeze through it.  To let people know, that even if it is really hard and really no fun, it CAN be done.  But, perhaps for those people out there, it would be comforting to know, that they do have sedating and calming things for people who really are claustrophobic. I had a mini-breakdown, and the radiation people were so kind to help me feel comfortable and ready. 

I would like to know how others respond in this situation.  We saw a man yesterday and as he was leaving yesterday his wife said, "she brought her machine." Something was also mentioned which indicated he was nearly done, and they were gone and it was my turn, So, as I was getting myself ready and feeling badly to be giving them so much trouble and said something to that effect, and she mentioned it happens near the end, almost like it was that man who had trouble, too.  Who knows.  I looked for him this morning, and he had his suction machine along and no one else, so perhaps he was feeling better, too.  Jim talked to him a bit, he can talk now, but I can't very well.  It just hurts too much after awhile. So, the PA today talked about other things like sedation and relaxants, which are fine for people who need them.  She just didn't think that I really qualify, since I've done so well so far.  There are other tricks to try, so after I'd suctioned well, I had them turn up the music so I could listen, asked them how many minutes I had for treatment, and counted songs, while I waited. I helped the time go a lot faster and I was done.  I'm never quite as anxious the other days of the week. and I should only have one more "first day of the week left", after labor day.  

Today was the first days for the Boost, we are starting to count down to the end of the radiation days. I'm not sure yet when the end will be, but it is getting closer. 

And.. a Good Night to You All

It is good to be out of the hospital at last!!  They dismissed me about 2 pm, and we had so much gathering up to do that waiting didn't seem long at all.  Really, how on earth so many possessions can spread all over such a tiny room in a week's stay, I have no idea!  

Of course, so much of that week's stay, consists of keeping track of a ridiculous number of medications, salves, rinses, and machines meant to keep me comfortable and well.  

One of the things that I have found out in my life, even if  I am in the hospital for a week, I'm not going to be having any time to be reading or knitting.  And it was true again, as well.  I don't feel well with a fever and low blood counts.  And I really don't like what morphine does to me.  Even when I have "normal" amounts.  I can't stay awake to even think.  They wanted to send me home with it, but I bargained hard for going home without, and I won, so I am back to the pain med. I had before I was in the hospital at all, and feeling human again.  

What a blur that week was.  I just lost one, clear out of my life, and we pick up and start again, just last week, only the numbers on the calendar have changed.  

Thanks, thanks to all the visitors, and commenters, and just-standing-byers. It meant a lot more to my family at the time than to "way out of it, me", but I am enjoying them now. 

The Third Ghost Appears

Here's another ghost-writer making her appearance. Hee hee. I'm actually not a ghost, if you happened to believe me, but the daughter of the wonderful woman who is presently sleeping in a hospital bed. Mom had a better day today but she is getting increasingly more tired as the days go on. I thought that mom would get bored being in the hospital for a week, but I guess it's not exactly boring alternating between sleeping, choking on gunk, taking medicine, getting fed, and nursing her mouth sores. It's all quite awful to tell you the truth, so it probably would be better if it was boring.
Anyway, they quit her IV antibiotics this morning and are waiting to see if she develops a fever overnight. So far so good. If she doesn't get a fever by tomorrow, she will get to come home!!!!!!!! They still don't know the source of the infection so they think it may be a reaction to the necrotic tissue that is sloughing off. Mom still can't talk or swallow, but she is getting quite good at communicating in more creative ways such as notes, sign language, and gestures. She hardly ever gets discouraged and if she can't get what she wants across in one way, she tries another. Basically, she's being the perfect example of how to endure gracefully in a horrible situation. I hope that next time you hear from this blog there will be a fever-free mommy sleeping in her own bed!
-Lynette Lea

She's back with us!

We're sorry to be a little slow in writing a new post.  Maybe we were unconsciously waiting for the real author to be back with us!   And now......

Here she is!

I'm finally feeling back in the real world

after struggling with morphine issues.

I mean, the stuff works great for pain, but interferes with real life.

So, I feel like I've hardly been around the last few days

to take in what is going on around me.

I'm hoping now to be going home Saturday morning

after finishing IV antibiotics.  

Finally!

What an ordeal this has been,

and I hope to catch up on missing details later.

Dodie has all the particulars under her care, and can give you those.

So, we've got a joint effort going on tonight.

Shelley

So now, folks, isn't that just the greatest?  Not a whole lot to say about the last few days since they were basically just a morphine blur.  It became pretty evident by afternoon yesterday that there was waay too much morphine in this little lady's system, so the decision was made to reduce it by a third, with the thought more could be added in if she couldn't tolerate.  That decision was made without her knowledge so there wouldn't be any anxiety about having less factored in.  She tolerated it really well, and....need we say any more?  Tonight she is perky enough to feel like writing that bit, her pain is well managed, and she is continuing to deal with the side effects of chemo and radiation, none of which are pleasant.  They've all been described to you before, so we'll skip it....except to say that the ghostwriter's term Demon Mucous is 100% accurate.

Thanks sincerely to the entire cheerleading section!

-The Sister-in-law Who Counts it a Huge Privilege to be Shelley's "Nurse" This Week!

Up and down, and all around...

The chemo radiation gig is definitely a land of hills and valleys. When you leave the valleys, you just have the feeling that you'll never the them again, and it's true, you won't see that particular valley again, but there is sure to be a new one around the corner! Yesterday wasn't all that good a day, though nothing specific, but last evening they found Shelley had a fever of over 102 again.  So, that got them going on IV antiobitics being resumed, and a round of tests to determine the source of infection.  Eventually they got her fever down, and things calmed down again, and she had a "fair" night.  Anyway that certainlly dashed any hopes of going home today, which had been the plan for a while.

Now, the news for this morning is that Shelley's white count is up to 2.5, a nice increase, and her ANC is 1400, which is nearly a normal level.  Dr. Oncologist was in this morning--he's a unique "nerdy" bookish fellow, who actually carries a little black doctor's bag! The source of the infection remains a mystery, since all the tests to try to determine that have come back negative, but guess the treatment is the same anyway--more IV antibiotics, at least through Saturday.  Guess Shelley will know what her address will be for the next few days! They took the "neutropenic cautions" off yesterday, which means Shelley isn't quite as much at risk for picking up new infections.

A lot of the "plan" has been suspended while Shelley recovers a bit, but it was interesting to hear that Dr. Oncologist doesn't plan, and has never planned, to give more than two chemo treatments during radiation.  So, the last two chemos will be done sometime after the radiation is in the past. What a relief to hear that!  After Shelley's ANC is back above 1500, they will resume radiation.  She just has one more treatment of regular radiation yet.  They they will do the "boost," which is concentrated in the area where the tumor was removed.  That should give her poor, beat up neck area a chance to start healing.

Right now Shelley spends a lot of time sleeping, which is quite merciful--a wonderful way for time to pass.  Her mouth, throat, tongue, nose, and probably sinuses are full of sores.  Her body makes lots of mucus to cope as the sores slough off the old cells and start healing.  The mucus casuses coughing, gagging, choking, coughing, coughing, and more coughing.  Hopefully any remaining tumor cells are finding their way down the drain these days also. 

Thanks again for checking in!

Smiling again in Kearney

It's so exciting to be able to share good news tonight!  Shelley is feeling a lot better today--her pain is under control, she's sleeping at times, the demon mucus is not quite bad.  It seems like she has rounded the bend again! Her white count is up from .7 to 1.1 (normal is something like 4-7.) Her fever is way down, although she still has a slight fever.  The criteria for going home is to be fever free for 24 hours. She didn't have radiation today, and it will depend on what her white count is tomorrow morning whether she'll have radiation tomorrow or not.

Now that Shelley is feeling better, everyone else is feeling better too.  I'm sure you've heard the saying, "If momma ain't happy, ain't nobody happy."  Well, this is just a little variation of that! The mom really IS the heart of the family.  (She won't like that word 'ain't' soiling her blog--sorry Shelley!)

Just a little picture of Shelley's spirit--the doctor's physician's assistant came in today and sat and talked with her at length, reassuringly.  Shelley then wrote a note to the PA, "I'm going to be fine..." Jim, Lorene, Lynette, and Dorothy have all had their turns being with Shelley today.  Dorothy will be staying the night tonight--Jim is there right now.

Just by a thread...

This will just be a quick update tonight for those of you who make up Shelley's support group and cheering section.  First of all, thank you so much to everyone who is caring, praying, writing, cooking, supporting, visiting, standing by, even "commenting." This is truly an "in the trenches" experience, and you are helping make it more bearable.

If you peek into Shelley's room tonight at Good Samaritan Hospital, you will find her propped up in a sitting position trying to get some relief from mouth pain and the mucus situation.  Pain control has been a big issue today, and maybe they're getting that worked out now.  Her white count hasn't improved today, in fact has slipped down in the wrong direction a little more.  Hopefully tomorrow will see the white cell count climbing. She still has a fever, although not as high as it was at first. It is hard to think that she'll be able for her radiation treatment tomorrow, but guess that really isn't decided at this point.  Dorothy is spending the night with Shelley again tonight, and Jim is going to try to sleep at home.

Still hanging in there, but just by a thread....
Shelley and family/by guestwriter

The good, the bad and the ugly, part II

It's the commissioned author again.  It seems like my posts are the gloomy ones, but that's the way it is.  If Shelley was feeling good, she wouldn't be asking anyone to write a post--she'd be doing it herself.  But, she also knows that you are waiting for word, and she can appreciate the fact that others are thinking of her and wishing her well.

Going into the weekend, Shelley wasn't feeling well.  They even went to see the doctor before the weekend, because over the weekend you usually get worse!  The last 24 hours have been miserable, with almost no way to get comfortable and almost no sleep. At 4 am this morning, she was running a considerable temperature, and after calling the doctor, they went into the ER.  After bloodwork, it was determined that her white count was really low (ANC of below 500, for you medical types...)  They also determined that the hospital was the best place for her right now, and she'll be there at least through the weekend, receiving IV antibiotics. The low white count is from the chemo, but the radiation is leaving plenty of its side effects--mouth sores, sore throat, mouth pain, and the copious amounts of mucus.  Since she's been in the hospital, they've switched around her pain medications because of what she needs to take for fever control, and that hasn't been a good thing at all. It's just a terribly miserable time for her, and she's just "enduring" at this point.  The radiation is starting to "burn" her face--a triangle from her nose to the chin, and also on her neck.

Now for the snippets of good news: Monday likely marks the last of her "regular" radiation.  After that they'll do a week (or more) of "boost" radiation, which concentrates specifically on the areas where the tumor was removed.  Hopefully her poor neck will get a rest from those ugly beams.

More good news: Dorothy has arrived to help out for a while. Shelley's voice has been pretty much gone for a couple weeks, so she has had to rely heavily on writing notes, texting, and now she's using a bit of sign language to communicate. The fact that she can't talk makes it pretty important that there is someone with her most of the time, especially in the foreign world of the hospital.  There won't be any shortage of things for Dorothy to do while she's on her "vacation!"

So, thanks again for your continued interest in Shelley and her tribulations. And, also thanks for your thoughts toward the rest of the family.  Jim claims he has a case of  "chemo brain" himself, these days.  Never knew it was contagious....

Good night, all!

The Good, The Bad, and The Ugly

Time to take the bull by the horns and write a post whether I feel like it or not.  Yesterday, it felt really good to say, "I'm half done with chemo," having two rounds behind me, and two left to go.  Today, it doesn't feel so good since we were asking the radiology oncologist, what the next two weeks of radiation would look like, and he said, "I reserve the right to add more more radiation if it is needed."  So, it doesn't feel equally good to say, "I'm 2/3 done with radiation," because I don't know if I am.  

In fact, I'm rather in a turmoil of emotions altogether, and don't really know what I feel, everything seems up in the air at the moment. 

One thing I know I feel, is that I would really, really like to be done with the radiation, and the side effects of that are hardly started yet.  I don't have any of the skin burning and peeling which is going to have to happen before this is all done.  

It is also really hard to know what sort of things to post because side-effects aren't really pretty.  I mentioned before that the radiation is damaging internal mouth tissue and then as the body tries to heal up that tissue, I produce copious amounts of mucous. 

And of course, the weekend also brings with it the next round of side-effects, which in this case is more mouth and throat pain and the mucous.  I have painkiller for the throat pain, which is turning out to be very necessary, and regular Robitussin cough syrup helps thin the secretions and make them easier to manage.  

I also am renting a suction machine to clean out my mouth.  This is another one of those, "who wants to read about THAT in a blog", moments, and then someone says, "surely you can make THAT funny," which I'm not sure I can or want to.

Of course, anyone who's been around small children knows that life can be pretty gross at times.  In fact, depending on the kind of people you know, life can be pretty gross.  And that is just normal grossness, sometimes you can know some pretty strange teenagers.      

The worst thing about a suction machine is that is makes a lot of noise, especially at night when Jim is trying to sleep.  Last night I was awake every couple of hours, but I'm hoping with the Robitussin, tonight won't be so bad.  Jim said he always went right back to sleep, but I still feel for him.  

We've managed to sleep in the same bed all this time.  I'm not sleeping lying down of course, because of drainage, but I have quite the contraption of pillows to keep me upright and in my own bed.  I'm much more comfortable there.  

So, dear ones.  No post of sparkling wit is coming your way, today.  It is par for the course, really, as the radiation and chemo take its toll on my body and mind, but this is what is happening here at the moment anyway, and we are tackling each problem as it comes.

Hair Today Gone Tomorrow

I don't know if I have used this title before.  It sounds like a good one to use for the time I butched Nathan's head, or the time when Jim cut Zane's hair for the first time.  I don't know, I would have to go back and look.  Perhaps that's why people have search boxes on blogs.  

Anyway, after yesterday's marathon of ER visit, mismanaged chemo orders, and a very long day, I thought I would still have energy to type a nice blog post.  The steroids, however, lasted only long enough for treatment to be over and then I was tired. The ER visit was diagnosed as infection in the tissue surrounding the tube, and was much improved by Monday afternoon.  The Chemo Drug story is much more interesting.  We went early to have blood drawn, but having it done completely in the ER we got an early start on the doctor visit, which was great, except when the time came for faxing the chemo orders, the nurses had all gone out for training, and the PA couldn't find the fax number.  She then took it to the front desk to fax, and I was thinking, "couldn't we just carry them?", when it all seemed taken care of and I was whisked away in the wheel chair.  It wasn't taken care of and the nurse sent someone over for it.  At the end of the day, it happened again. We were waiting on the last drug that takes three hours to go through and here is wasn't.  She had to send someone out again. So, it was after 6p when we were dismissed.  

So, I was tired.  

Hair is such a bother in chemo and radiation.  I can't have any metal on my head during radiation, so I've just  been wearing it in a braid, and combing more hair out every day, that when I had half my braid left, I just had Lynette cut it off.  Every morning, the hair was so matted above the braid that I was pulling handfuls of hair out to rebraid it.  We decided it was time to just let most of it go. 

The final style.

Which was great, except now I had 5" long hairs floating around behind me and that wasn't working either. So, Jim cut it it all about 1 1/2" long, but that still left 1 1/2" long floaties, in the air, on the couch, on my pillow, where ever.   

I know after living with long hair for so long, it was hard just to think of going right to the bald stage, so I thought little by little would help.  It does some, it gives the illusion of not losing my hair so quickly, but like so many things, I quickly realized that it was only a temporary solution to an on going loose hair problem.  

So, last night, Jim got out the clippers and performed the final shaving.  

Ha, I bet you thought that the next picture would be me bald!

Here I am all set up for a long chemo day, except Lynette came in and snitched the computer, so I did other things instead, and Dan and Cyndie came to visit.  

I, actually, have a little hair here, it is combed.  

Quick update after long day at Cancer Center

It's the ghostwriter/sister-in-law again, only with an upgraded title of "commissioned author," lest anyone thinks I hacked into Shelley's blog and posted information without her knowledge! I've been commissioned to do a quick update this evening after their long day at the Cancer Center to let you know that Shelley did fine with chemo today.  Their day actually began at 11 pm last night when they made a trip to the ER with feeding tube problems, didn't get home until 3 am.  Then lots of complications getting started at the Cancer Center, but once things got rolling, they went well, and Shelley is feeling better today than she has for several days.  Today she's done a little talking and a little swallowing--things we all do so effortlessly and take for granted, but they were nearly impossible for her the last few days. She's feeling enough better that she's hoping to post more details soon, maybe tomorrow. So, stay tuned for further updates from Shelley herself....