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.