The good, the bad and the ugly, part II

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

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

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

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

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

Good night, all!

The Good, The Bad, and The Ugly

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

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

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

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

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

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

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

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

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

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

Hair Today Gone Tomorrow

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

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

So, I was tired.  

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

The final style.

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

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

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

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

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

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

Quick update after long day at Cancer Center

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

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. 

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.