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.