The Bearer of Bad Tidings

It's the ghostwriter back again, and that's not good news.  When Shelley is feeling even half way good, the words just flow out of her fingertips into her blog. But, since Thursday the harsh realities of head and neck radiation, coupled with the chemo, have set up camp in the brick house on Northview Drive.

Thursday there were hints of things getting worse, pain in the lymph nodes under her jaw, and such, and it worsened on Friday.  Things got yet worse over the weekend, when it became very difficult to swallow.

At Monday's radiation appointment they took this worsening quite seriously--did blood counts, blood cultures, changed her to liquid painkiller, gave her a bag of IV fluid since she wasn't getting much down, and scheduled her for surgery to have a feeding tube put in.  Oh, and cancelled Tuesday's radiation because of low white blood count.

So, today there was no radiation, but the surgical procedure to install this new apparatus, a PEG feeding tube--goes from the abdomen right into the stomach.  It was just a 15 minute surgery, but there was a four hour recovery because of getting a couple more bags of IV fluids to keep her hydrated.  It can't really be used for feeding until tomorrow, but nurse Jim got preliminary instructions of how to use it for her medications tonight.  Tomorrow they'll return to the Cancer Center to get the full course on the care and feeding of a feeding tube.  They're assuming there will be radiation again tomorrow, but no one said for sure.  Shelley is sore because of the surgery today, and just generally miserable.  However, she does feel just a little better this evening.  It's a relief to not have to swallow very much, and the painkiller takes a lot of the pain away except at the times she has to swallow.  There is so much mucus to deal with, and that is really her number one discomfort at this time.

Shelley's hair is starting to go, but not in a sudden dramatic way like you might expect.  Just more and more combs out all the time. So--all in all, these are rough days.  And, there are many more of them ahead.  Sometimes it looks like the light is very far down at the end of the tunnel.  So, this is one reason I'm back on the job, so you can continue to share in their challenging journey.  Your encouraging comments and feedback are appreciated and needed at this time.  It's a pleasant diversion for them all, and gives Shelley a fleeting moment in which she can focus on something besides pain and misery. Thanks so much for your thoughts their direction.

Bits and Pieces

Thursday Morning

Last night I felt like I would never be able to write a cheerful post again.  Luckily, I felt better in the morning, and yesterday was just foreshadowing  the rough days I will be facing ahead.  The sun is shining, (I wish it was rain, however) and I am awake, feeling better and drinking my morning shake, with little pain.

Every morning I go to radiation and they ask how I am doing and I say, "fine".  Yesterday, I told them I had a little pain in my throat, and they said, "I'm sure that's from us."  Very nice of them to take the blame.   What is funny about this bit of pain is that it feels like one of the lymph nodes under my jaw is very sore.  Just one, on one side.  However, as the day went on, my body didn't want to chew and swallow past that pain.  So, by the end of the night I was feeling very sorry for myself, thinking here, a week and a half into treatment, one small spot of pain, and I'm complaining already.  So, I went rather into a blue funk for awhile, and went to bed.  So, it was very nice to wake up this morning, feeling as well as I did yesterday.  The sore spot isn't gone, but it is doable.

Plus, Jim is back home again, and that always makes me feel better.  And, I can whine all over him if I want to.

I had a big day yesterday and really enjoyed it.  I did a few things around the house, like sort all the clutter off the bathroom counter, and wash the rugs.  Just putting a few things away, those things that hang around the house that no one every seems to put away except me and helping with supper, (which Lynette made all by herself, with only advice for guidance) and having company felt good.  Actually, all I did for supper was rinse the cucumbers badly, and they were still too salty.

I'm starting to comb long hairs out of my head, so a few are starting to let loose.

Other things are normal around here, Jim and my mom put up 30 bags of corn last night, and the dishwasher we ordered is in.  I hope Jim can find time to put it in this weekend.  We haven't had a dishwasher for months.  I didn't really miss it, but I'm not the one doing dishes just now.

Jim is taking a piece of equipment we've rented back to Lincoln today.  He's pulling off the job he's been working on so far away, until after corn harvest.  That job has been plagued with breakdowns and other complications, (partly mine), and it will be nice for him to be here through most of my treatment days.

One of the fun things of writing down all the stuff that has been happening to me, is writing down some particularly strange things that go on.  I have been getting some sores along my incision site that have been really worrisome to me.  We have discovered however, that the stitches are working therr way out from underneath and causing sores as they come out.  Well, and good, we watch for those and catch them before they cause big problems.  Now, however, the stitches seem to be all out and now HAIRS are working themselves out from underneath and making sores.  They didn't shave my head, and I don't really know if they cut the hair short in the incision area or just cut through the whole thing, but at any rate, there are hairs that got trapped under the skin and are working their way out now.  Lynette went over the whole area the other night pulling them out,(they aren't attached)  and no more sores.  Sorry, people, for those who aren't into the nitty gritty medical side, this might be a bit yuck. It's nice to have a daughter neat handed and careful and WILLING to keep me healthy.  (Jim was gone.)

I weighed Thurs, three pounds up.  YAY, now to keep it there or gain some more, and I will see the doctor, or rather his nurse practioner to discuss first line of pain killing options.

Week 2

It seems so strange to be feeling as well as I am today, and have a week of treatment down.  I DID have my chemo down days Saturday and Sunday but all they consisted of were tiredness and feeling "full" in my stomach.  I felt so bloated up that I didn't want to or couldn't eat or drink.  That created its own problems as I am needing to keep my weight ON instead of letting it drift away because of not eating.  By that time, "chemo mouth" was in full swing, and it is also hard to eat when everything tastes like you're eating spoons.  Cisplatin, (my all day chemo drug), is made of platinum, so I get a metal taste in my mouth.  Radiation is also supposed to alter my taste and the doctor said today, soon everything will taste like dirt.  My mouth doesn't really taste like dirt now, it tastes more like charcoal.  But, it is getting better.  I can taste salty things today and the potato soup, (with extra meat) and salted tomatoes went down well.

And, so, I've started week two.  

The same old drill, climb on the table, get snapped in place and away we go.  This time however, it took a lot longer,  they took some more pictures of me.  It's a good thing those aren't being published, because no one looks good lying on a table with their eyes closed.  Those just go into my medical file which is three inches thick and getting thicker every day.   

Since this is Monday I have to be weighed, and then I saw the doctor who was gone all last week to a conference.  I thought he was on vacation, but no, he's going on vacation NEXT week.  Thankfully, I really, really like his Nurse Practioner, she is thorough, and she is the one who looks after my basic health, which is why she had a conniption when I lost 5 pounds over the weekend.  Of course, it is her job to keep me from losing strength and not getting enough calories is a sure way to to do that.  They threatened me with the feeding tube again, so I REALLY need to find some of those 5 pounds back in the next couple of weeks, preferably before Thursday, when they weigh me again.  Here, I've spent half my life trying to take pounds off, and now, as they tell me, "this is the only clinic where weight gain is pushed.",  I need to be eating extra protein, extra fat, just whatever I want.  "This is no time to be eating spinach!" the doctor says.  I still think I should put some in my shakes.
So, I'm supposed to be eating every two hours, swishing that really expensive mu-goo, four times a day, (then an hour of no eating or drinking, after that), drinking loads of water, plus all the other things, sinus rinses twice a day, fluoride at night, brushing teeth three or four times a day, AND, AND, well, have time to talk on the phone, see people, get office work done, and have naps. I think I need a schedule.
I already have a housekeeper for awhile, thank goodness for my mom.

It was good to see the doctor anyway, he told us some more about how they were doing the radiation.  They are aiming the most powerful shots in the left sinus area where the tumor was mainly found.  As I have 200 Centigrays every time I go in, after six treatments I'm up to a level of 1200 cg total, and I have to have 5000 cg total.  If you do the math, that is a 1000 cg every week, and will take 5 weeks.  After that, I get a "boost" of a 1000 cg over the last week, concentrated in the area where the tumor was, i.e. the left sinus area.  There is the total of the 6 weeks of radiation.  This is standard procedure to do it this way.  Radiation really isn't a "weekly" or "daily" thing,  I am going to get the amount of radiation prescribed, a day missed, is a day made up.  And it accumulates.  Just because right now all the pain I have is in the bridge of my nose, and as long as nobody is poking it, I can ignore it, it seems like not much is happening.  However, the doctor assures me that as the level of radiation rises, so will my discomfort.  

So, now is the time for all good men to come to the aid of....well, anyway, it is time for all radiation patients to eat up!!  And it is HARD work, let me tell you.  

P.S.

The results of my scans are clear, which feels really, really, good right now.

P.P.S.
Sadly, I removed an unkind comment from a previous post.  It is the first time I've ever had to do that. I don't know the person who commented, I don't know exactly what she was getting at.  It simply may have been spam.  At any rate, it is gone. I apologize to any who may have seen it. 

Fourth of July 2012

You know, life goes on even after you have a cancer diagnosis.  So, I was glad to be well enough to host my family over the 4th of July holiday.  I didn't do much hosting.  I have a capable family, and they took care of everything and I just watched and visited.  

I also have pictures of Barry at 10 months here and he is progressing well, and just SO cute. 

He's figured out he can walk behind this toy easily.  There just wasn't quite enough room to go well.

He still crawls in his funny one knee up, one knee down hitch along fashion, but he is also standing alone, after letting go of things and holds things in his hands while standing.  His preferred method of learning at the moment, is shaking whatever he is standing next to, it is a good thing chairs are sturdy, but he's going to have one over on himself one of these days.

Supper on the Deck

This was supposed to be an "all cousins" photo, but Titus got missed.  You'll have to look for him on the eating photos.

My boys.

Big Blue Eyes.

Grampa and Gramma with Barry.

I don't have photos of everyone here.  I didn't take many as I was sitting and not following everyone around. Luckily, my sister in law, is a great one for getting photos of everyone, so we DO have some.

We had a great time with Tim's famous ribs, done in our fire pit, and a bunch of other good food that ends up in our get togethers, like my mom's enchiladas, and chocolate cake with homemade frosting.  The only thing we didn't get this time was mom's apple pie.  She only had enough apples for one pie off her tree and they ate it at home instead of bringing it along.  

Mom spent a good share of her time putting the apples that were falling off my tree into the freezer.  I'll be glad to have those this winter.  I couldn't do it and it was the best crop we've had so far. The only problem is no one has time to pick all the rest of the fallen apples off the ground so they will be full of bugs next year.  Oh, well, next year I can keep the ground clean and have better apples the NEXT year. 

(No rotten apples on the ground, no bugs next year.)

We have another tree, but we aren't going to deal with it, it's hard enough to keep up with the garden. 

I had a great time with everyone here, it was nice to be all together again.  The cousins are growing up, we already have the next generation started.  It will be harder and harder to get all of us together as the years go by.  It might not be so often, and it might take more planning, and it will be more fun as the years go by. 

Day 3 of Treatment

I took these photos on Day 2 of chemo plus radiation.  I'm gearing up to the time when I won't be able to eat because of soreness in my throat and looking to go the smoothie route, with protein shake, yogurt, ground nuts, greens and fruit to get my protein, calories and vitamins. 

Thanks to all those who give me things to make my days brighter.  This is a goodie bag for after treatments.  What fun!!

We had to go to Omaha on Day 2 of our treatment for a final check on the interior of my sinuses before treatment so we had an early radiation appointment.  Jim came back to see how they get me ready for the radiation.  It's a big room with this brand-new radiation machine that is able to pinpoint areas with greater accuracy in aiming the radiation so that they can miss the parts that don't need it. The room has 5 ft. thick concrete walls with a huge thick door to close me in on the little radiation table, while the techs are outside running it all on the computer and watching me on monitors.  I just lie there with my mask snapped to the table while the table moves into position, (this is done with lasers), listen for the machine to get into position over my head and listen to the buzzing and watch the flashing lights for 10 minutes and I'm done. 

It's 200 Centigrays for those who are interested and might know.  

They are radiating all of the front part of my head, face, sinuses, lymph nodes, from my forehead to my collarbone. There is no evidence of cancer in those lymph glands, but in case of a rogue microscopic cell, they are going there.  Better to get it all done at once than having to go back and do it again, I say.  I'm thinking I won't be very excited about having radiation there ever again.

Sadly, head and neck radiation is the worst there is for effects on the body, due to soreness and eating and swallowing problems.  It's a good thing I like to drink smoothies and you can dump lots of things in for nutrition. 

That mask leaves marks on my forehead for a little while.

Now, we come to Day 3.  This was the final day of the first round of chemo.  I had no trouble with the chemo except for a slight anxiety attack on the first day while watching them put the first medicine bag on.  First rule of thumb, don't watch the medicine go in! So, I don't watch anything and I've had good luck so far.  Of course, they put so much med. in with it, so you don't have problems, steroids, for nausea, to make the chemo work better, and for reactions; and two anti-nausea meds.  So, then when chemo is over, and those meds aren't in me anymore, I'll have some "chemo-down" days, when they say I will feel like I have the flu. That will be this weekend.  After that the blood-counts go down, so my immune system is depressed, and then it will come back up again, in time to start round two for chemo.  

So today, I am feeling my first changes.  I look like I have a mild sunburn, and I feel something at the back of my throat.  I was given a brand new product today, that is being used for mouth and throat irritations due to cancer treatments.  It is supposed to be used 4-6 times a day and then you can't eat for an hour afterward.  I have no idea when I'm supposed to eat, with that sort of schedule!!  

I've also started using my fluoride trays, which is a 5-min. session of fluoride followed by 30 minutes of not eating or drinking, but that is done at night, so it isn't so much of a problem., I have so much to do to my person with all this routine and medicine that I don't have time for getting much else done.  I think I need to make a schedule.
Anyhow, now I just go in every day for a 10 minute radiation treatment, the whole thing takes about 15 minutes, and we are on our way again.
Chemo starts again August 6th.

A Long Day

The first day is over. I am very tired.

We were at the Platte Valley Medical Group Clinic at 8:00 this morning. We went right back into the infusion room to start the IV through the port. The nurses called it a "naughty port day" because the first three ports they started failed and had to be redone, one of them was mine. The nice thing about the port is they can take blood sample through there without having to stick me more times.  Another nice thing, is that the needle stays in the port for my three days of chemo, so I don't have to be poked again.  Before I start the Cisplatin, I have to have two hours of saline. About half-way through that they decided to start the VP-16 and run it at the same time as the saline, that lasts an hour and a half. After that, they began the Cisplatin which lasted another hour and a half. Then it was flushed through with more saline for another three hours. By this time it was 5:30 and still had to walk over to the Cancer Center for radiation. They had to open the back door to let us in because normal clinic hours were over. Jim went to get the car while they put me on the table, snapped the mask on, and radiated me. Twenty minutes later I was all done. Now I am home on our nice, not-quite-so-new-anymore couch and having a hard time getting the energy to go to bed.

Lynette is making me an ice cream sundae with bing cherries so I guess I'll stay up for that.

Oh, by the way, the IV bag with the paper bag over it is the Cisplatin, it is sensitive to light.  

I also had what we think was an anxiety attack when they put my anti-nausea meds in with the first saline.  I was looking up at the bag, and all of a sudden I felt sick to my stomach and got really hot, so that created a bit of excitement, but my vitals were all good and I soon cooled off and I didn't look at them hanging up the bags anymore.

Using The Calendar

I put a calendar link in the upper right hand corner of the blog because some people were asking for it to help plan for visiting or whatever during my treatment.  It is set up that anyone who logs into the calendar can add to the calendar if they plan to visit or drop off something, or whatever.  Then I can check the calendar morning and evening and know what it going on.  I want to use it for treatment times, also, so people know whether I'm home or not.
As of right now, I think I will welcome visits, and calls at most anytime I'm home.  And I'm hoping that after this first very long chemo day I will know the ropes, so people can come and keep me company while I am 6 hours or more in chemo.
To enter anything into the calendar you click on the day you want, and at the top of the days is a cursor with a place to type.  If you make a mistake, you can click on your entry and a box comes up to edit what you just entered.

The Waiting is Over...

for the first step anyway

Chemo and radiation start Monday.  

These are really gorgeous flowers by the way and sent to us from some very nice friends who do so much for us already.  I am really enjoying them.

Anyway, I am off to a good start this morning  The first thing I did (after going back to bed after seeing Lynette off at 5), was put a load of wash in.  It wasn't until it was half done and I was doing the 'get ready for the day' part of my morning, when I remembered I hadn't put any soap in.  I've got chemo brain and I haven't even started yet!

I'm feeling better today.  Jim is coming home this evening after being gone since Tues. My scans are done for awhile, and someone is coming to visit later and that always cheers me up.

I had that PET scan yesterday and that was another different thing.  It was a radioactive scan, too, done at the Kearney Imaging Center.  The same man injected me as for the bone scan but he was better today, just did his job and answered my questions.  Sort of makes me wonder if he realizes what I have is serious and he'd better not joke around, That is part of what made me a little bit off yesterday.  Either that, or he was off. Or I have too much imagination.  

Which is entirely possible, err... probable, err...downright true.

Since it is radioactive and all sorts of precautions have to be taken, I go to this little room with a recliner in it, marked "RADIOACTIVE MATERIAL", (I mean the door of the room, not the recliner), and have a needle with a line put in inside my elbow, like a short IV, into which he put saline, the the injection, then more saline.  The injection was in a large heavy looking metal syringe that was probably lead lined for everybody's protection but mine.  Then he left me in a semi-darkened room for an hour with instructions to do nothing, no reading, no cell phones, no texting.  Lucky for me I forgot my cell at home.
So, I thought, (too much imagining here), I told myself stories, I wondered what time it was, I counted seconds, and then a nurse came in to ask how I was doing, and "it won't be long now," so I counted some more.  I was going to count 10 minutes but I got sidetracked and pretty soon she came back in and took me to the scanning room to put me in the usual scan position: feet up to the end of the table, a pillow for my head, one under my knees, straps to hold up my arms and a nice warm blanket.
I was hoping I'd have a nap during one of these times, but it didn't work out.  I spent the 20 minutes going in and out of the big doughnut looking scanner thingys wondering how they worked.
Then I left to find my ride waiting and had a nice lunch out!
Thank you very much!
I was starving.  I spent the 24 hours before the scan eating a high protein/low carb diet, and the morning, eating nothing.
And I came home and tried to have a nap while Lynette was having one, which I eventually did and lucky she woke up at 6 or we would have missed our evening activities.

And, it's true, I am starting chemo on Monday.  I called the chemo Dr. last week for something, reassurance probably, and the nurse says, "well, we're seeing you on Monday anyway".  Oh, really??  Well, I hope they were going to call me.  So, the first day, Monday, I will to go Platte Valley Medical Group for a check up, then the long day of chemo with Cisplatin, which is the really scary one, and VP-16 which is the one which will cause me to lose my hair, I think, I can't imagine it, until it happens.  They are doing the chemo there under the watchful eye of the doctor in case of any reactions.  Then I trot over to the Cancer Center for the radiation.  The next two days, I will do the VP-16 at the Cancer Center followed by the radiation, and that will just take the morning.  Three weeks later, we repeat, but I don't know if I will have the long first day at the Cancer Center or Platte Valley.  All this time, though, I will be going to radiation, every day, 5 days a week, for 6 weeks.  I don't know what will happen, but I've been listening to other people and reading, but I won't really know, until it happens.
I was reading my cousin, Michelle's blog yesterday.  She blogged through her second time around with cancer and I wondered what she felt like in chemo.  The best case scenario, is a few days of doing nothing and that helped her more than trying to get anything done.  I find myself imagining all sort of horrors to have to deal with, that's what happens when you read the fine print, and the doctors have to tell you every known side effect even it it hasn't happened to anyone yet.
(Well, I suppose it's happened to somebody or they wouldn't know about it.)
Anyway, expect the worst and hope for the best, as they say.
Maybe it won't be as bad as you think, etc., etc.
Well it will be what it will be, and I'll deal with it.  I've found that realities don't scare me nearly as much as my imagination.

And for those of my followers who are Anne fans, I remembered this today:
From Rilla of Ingleside about Walter,
"Realities never scared him--only his imagination could do that."

One More Step

This is a rather gorgeous morning this morning, as I sit and look at it over my laptop.  There is a spray plane noisily spraying the field north of us.  When I poked my nose out at 5 am as Lynette left to de-tassel, I didn't say anything to her about the weather.  What is cool and lovely to me, will be wet and cold in the middle of the cornfield until about 11 when it will be stifling....and still wet. 

I am learning so much about how my body works and a lot of other things in this ordeal.  I am finally feeling well enough to type (with tylenol).  Even typing hurt my chest muscles yesterday.  I really should be doing office work.  

Friday I had the bone scan.  I rather dropped the ball on that one, and didn't ask enough questions.  I was injected with radioactive stuff and told to come back in three hours and then had a full body scan.  I want to call to day and get the results.  I didn't know it was going to be a radioactive injection.  There is a little room down in radiology marked with signs, and one man that handles the radioactive material.  He was the first one who I haven't been really impressed with his bedside manner.  He was joking around and I didn't think joking about radioactive stuff, nor anything else was necessary or appropriate.  I think he is the one who will administer the radioactive sugar injection for the PET scan.  It sounded like he was the only one who handles the radioactive material.  

I got the injection in my vein with a heavy walled square syringe, anything he used looked well ....like heavily protected stuff would be in it and he filled the syringe behind a clear shield.  

Then the scan was just a scan.  Lying down on a table with some sort of thing (it was flat) that slowly moved the length of my body.  It's closest to the face, about an inch, but soon moved past that.

Monday then, we were at the hospital at 6 am to be admitted to out-patient surgery.  There is the neatest little set up for surgery.  There is a little waiting room and dressing/bathroom connected to the prep/recovery room.  I had the heart monitor pads and the IV put in before Jim could see me, then we had to wait an hour for my 7:30 surgery time.  

I've discovered that my veins really aren't that easy to find for IV's.  I mentioned to the nurse who put mine in that while I was in the hospital they warmed my arm, and it went in easy.  So, she wrapped my arm in a warm blanket, and put the IV in my wrist.  Slick, and the first time, too!

I was just sedated for this surgery and since I hadn't slept well the night before, I was tired and ready to be out.  The procedure really is a quick one, which two incisions being made. One to thread a long silicone tube into a big vein in my chest, rather like a heart catheter and another slightly larger one to put the port in.  It is completely inside my skin, there is nothing to show on the outside except a slightly raised spot. (At least, I guess so, I'm still bandaged and I'm not touching anything right now.) The port is a little larger than a quarter with a self-healing rubber top that can be pierced with a needle.  So, I will still be poked through the skin, through the rubber, and the medicine, fluid, and chemo will be put in that way.   

The port will be removed when I don't need it anymore.

I really think it will be easier on me this way.  They are putting some pretty powerful stuff in me and even though chemo is every three weeks, it is three days that week, and it may be that I will need extra fluid or blood in-between times.  

I just seem to be going on without thinking too much of some of these procedures.  It is still very hard for me to imagine what my body is going to have to go through.  What I'm putting it through, but right now, there isn't any other way.  I believe I am doing the right thing, in spite of the doubts and fears.

So, even though I'm recovering, (again!) I can get some office work done, and feed myself, no strenuous work for the rest of the week!

It does get boring at times. 

Brief and to the Port

I have lots I'd like to say, since I've learned a bunch of new things in the last couple of days, but I have a sore right chest from the port that was put in today.  I think I'm going to be glad in the long run that it is in there.  But, right now I'm feeling sore enough that I'm glad to do nothing, so I am taking the opportunity of heavy duty pain killer to type a little here before I fall asleep.  

The port was put in as out-patient surgery.  Surgery is still surgery, with the IV, the sedation, monitors, recovery, etc.  I was admitted at 6 am and home at 10 am.  

The type of port I had put in is completely under the skin, and a special needle set-up is put through the skin,  into the port and medicine put in that way.  

Anyway, I'm not quite up to a bright, shining post this evening, but I'm sure I'll feel better tomorrow. 

Twenty-Five Years Ago

Twenty-five years ago, Jim and I were married.  I've kept the cards we received in a scrap book all those years.  But, I thought it would be more fun to look at them in a smaller format that didn't need dusting and moved around.  

It brings back lovely memories of all the people who gave us good wishes so many years ago.  Time goes on and some of these people are no longer with us, but they all have a story worth remembering. 

Good Advice

'Tis the season to be married, falalala lalala, okay, wrong season. But many people do get married in the summer.  I did.  Well, technically by the calendar I didn't since spring by the calendar isn't over until the 22nd of June or somewhere in there.  

When I was going through my wedding cards a while back I found this one from a dear letter writing OLD friend.  She was old when we first knew her, so she was really old the longer we knew here.  

However, that is really neither here nor there, that isn't the point.  The point is, we didn't really know how dear she should have been to us until it was too late.  

She was one of the great letter writers of the world, and I bet if I would have written her more letters, I would have received more of her wisdom. As it is, I have four very good and precious letters written by her on the occasion of our wedding, and receiving and births of our children.  

This one is our wedding one.

The Show Goes On

Slowly, slowly, the stage is being set.  I have just a few more moves to make before the show goes on.  Today Jim and I went to Omaha to see the dental oncologist.  It was one of those appointments that we all wish could have been made in conjunction with some other Omaha appointments, but even dental oncologists like to take vacations once in a while. This appointment only took an hour for him to look over all my teeth and gums and pronounce them healthy.  He explained very thoroughly what was going to happen in my mouth during radiation and gave me a hug when we left.  I think I'm beginning to look a little shell-shocked.  

Radiation is at the same time a both very dangerous and very wonderful thing. Where it goes it can leave it's mark forever.  They say it is like having a sunburn all the way through.  The good thing, is that it kills cancer cells.  The bad thing is that is also destroys salivary glands, which leads to dry mouth and lessened protection for the teeth.  I had heard that one before.  Another bad thing is that radiation also hardens the capillaries it touches which hinders wound healing.  That is why dental work has to be done BEFORE radiation, any teeth pulling, any thing that requires healing, because afterwards, the healing is compromised severely due to damage to the capillaries.

This really was rather interesting because it explains so much what I've heard about other people having dental problems during and after head and neck radiation.

Now, how much damage will actually be done inside my mouth depends some on the PET scan that will be done next week.  It is supposed to show if there might be cancer in the lymph nodes of my neck (or anywhere else for that matter), and that determines just how much of my neck will be radiated.  I don't know that they expect to find any there.  I don't think that they do.  It's just that they like to know where clear margins are before they begin.  If there is none there, there is a good possibility that my bottom teeth will escape treatment, which will lessen some of the above mentioned problems. As for my situation, having healthy teeth and gums to begin with menas I can be proactive and not expect trouble down the road, just a few speed bumps in the care and cleaning of my teeth.

Right now, it seems like every time I turn a corner in this journey, there's a bigger hurdle to overcome.  I think the reason for this is that I'm geared up to fight a battle, but it isn't here yet.  I'm still just getting ready.  The waiting is the hard part and it is starting to get on my nerves.

The end is in sight, however.

I mean the beginning is in sight. 

Tomorrow is the bone scan.

Monday, the port goes in.  

Thursday, I have the PET scan, 

and Friday, I have a dental cleaning and fluoride tray made,

all here in Kearney.  

Yay! No more travelling to Omaha for two weeks and I am totally exhausted from a seriously enjoyable family holiday, and Lynette starting de-tasseling today, so we had an interrupted night, so we are all going to bed NOW.

Good night, sleep tight, don't let the bed bugs bite.

hee hee hee

Scared to Death

I would really like to think of a cute title for my blog but what comes to mind, is "I'm scared to death" about what happens next.

Today I saw Dr. Bascom for the plan for the chemo. When treatment starts and even if I don't know the exact day yet, that day is coming progressively closer.  

In fact, this post is going to be very hard for me, because I'm not liking the face of the reality I'm looking at.  So, when treatment starts I will have a long day with blood work at the doctor's office, over to the Cancer Center for IV chemo, with the antihistamines, the anti-nausea, the extra fluid, the cisplatin and VP-16 and then more fluid.  Then there will be the radiation after that.  It will be an all day thing.  

The next two days will be IV with the VP-16 plus radiation.  The radiation will continue 5 days a week, for 6 weeks at least, the chemo continues once every three weeks for 4 cycles.  (That continues after the radiation stops.)

We listened again to the side effects, hair loss, soreness in the radiation sites, magnesium and potassium depletion, lowered blood counts, and there is that extra fluid requirement to make sure the chemo is out of my system to protect my kidneys. 

It sounds scary, really scary. I can't remember everything just now that we were told, but the impression I came away with, is that I'm not ready for this, I don't want to do this, I'm scared to death about what is going to happen to my body with all this stuff they are putting in it.  

So, enough of that. 

I'm starting on the program of spending the rest of my time in doctor's offices.  Thursday, the 5th, I go to Omaha to the dental oncologist, Friday, I have a bone scan.  They are talking of scheduling a PET scan.  Monday I go in at 6am to have a port put in. (That's outpatient surgery.)
And what's next?  Tune in for the next installment of....
"Life in the Cancer Zone"

Thank You Very Much

One of the things I never expected when putting my cancer story on this blog is just how much interest it would generate.  I had surgery on May 30th, and I meant to write this on June 30th and look at the stats, but I forgot.  I think I was resting, fending off a headache.
This month people looked at my blog just over 5000 times.  I now have over 20,000 pages views. Wow! I really appreciate all the interest.  It has helped keep me entertained.  Thanks to all of you who come to see what is going on.  There will be more information later this week.  It is a holiday week, but I have two doctor visits, one in Kearney and one in Omaha.  I also have family coming in, to blogging will not be first priority, but I imagine there are plenty of other folks out there planning to celebrate this week too., and not read blog posts.  

I really am feeling better.  My area of pain is concentrated on the bridge of my nose, and I do treat the incision area carefully, since that is tender in spots.  But, I am up and down and doing homey things.  Not everything, since just making my bed still makes me puff, but I'm getting bored if I don't do things.  I'm still not running my house like I usually do, especially in the food department.  I don't care much about food these days, so we eat a lot of leftovers from somebody else.  They are quick, and need eaten anyway. So, thanks, folks for enjoying my blog so I can enjoy it, too.

One last thing:
I've had several people wondering about leaving comments.  If you want to make a comment, there is a box at the bottom of the comment list, and you can type a message in the box.  The easiest way then to leave that comment is to click on the circle next to "anonymous".  Just be sure to sign your name.