Tuesday, August 28, 2012

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. 

Saturday, August 25, 2012

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. 

Friday, August 24, 2012

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

Thursday, August 23, 2012

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.  
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.


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!

Wednesday, August 22, 2012

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!

Monday, August 20, 2012

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.

Sunday, August 19, 2012

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

Saturday, August 18, 2012

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!

Monday, August 13, 2012

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.

Tuesday, August 7, 2012

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.  

Monday, August 6, 2012

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....

Thursday, August 2, 2012

Hanging In There

I am so very, very thankful to my sister-in-law, being willing to put into words what I couldn't last night.
This having surgery every week for something or other sure takes the startch out of me. 
And, as the day wanes, so do I, and I don't have the strength to write long entertaining posts.
So, the facts, I missed radiation Tues, because they found my white blood counts too low while they were giving me extra fluid.  I had the stomach tube put in that day and 2 liters of fluid.  Since then I've been sitting on the couch between radiation and doctor instructions on how to use a stomach tube.  So, I really don't get much done except feed myself and take naps. And the other things to keep the rest of my body healthy.  It is hard to brush my teeth since the inside of my mouth is sore, but you people will be glad to know I am on some high powered medication, including a Fentynal patch, that does a very good job of pain control as long as no one is poking the sore spots in my mouth.  
I think I can tolerate the way things are going for a few more weeks.  I'm just hanging in there. 
I do really appreciate your comments and encouraging words.  They give me something to do, when I'm awake.