Cancer is an Ugly Word...

 June 23, 2012

...so are surgery, tumor, chemotherapy and radiation

There are also a big bunch of other words I don't like that now belong to me, like Stage IVB small-cell neuroendocrine tumor and 'very rare.'

There are some comforting things, however, the first one being that I'm still alive with most of the faculties intact and I'm improving every day.

Another thing is that Stage 4 for this kind of tumor means things like size and placement (like next to the brain.)

Also, this tumor is rare because of where the crazy thing was. Yes, there are nasal/sinus tumors, many of them. Neuroendocrine tumors are also a very common kind of cancer, it's just that you don't find those kind of tumors in the nasal/sinus area.

It's like being a poster child.

I am also causing all the doctors involved to do a lot of research.  (I'm not sure I'm so unique on that one, it seems like cancer diagnosis and treatment cause a lot of effort in the research department.) 

However, there are several words that I do like, doctors who are called perfectionists, nerds, and careful. Words like, 'we expect you to be cured'.

My doctors do inspire our confidence.  They are kind, efficient and answer our questions before we ask them, that is a good thing. Oh, we still have plenty of questions and ask them, too, but they are more personal things, like how many problems will I have during treatment, and will I be the same again?

So, there are plans out there for treating this type of tumor, all our doctors are working together, making the plans to fit my circumstances.  

As far as I understand things at this time, the chemo and radiation will start at the same time.  The chemo is cisplatin based and is given to make any cancer cells left more vulnerable to the radiation. 

I don't know anything about cancer treatment, really, the nuts and bolts of the process, I mean.  I could have known more, since I know a few people who have had cancer. But, I don't. And anyway, some of that stuff changes so quickly, it may not have done me any good.

Normally, radiation sites are marked onto the skin with some sort of indelible ink. Thankfully, they don't think that is a very good choice for radiating on the face. Also, because of the sensitive nature of a good deal of the stuff that resides in your head, they want to be able to be very precise and accurate so nothing really important is damaged. Which means I have to be tied down, so I can't move. 

Now, how they do that is really very interesting. They made a mask out of a plasticky-feeling stuff that is molded to my face and shoulders and then marked with with radiation sites. 

Since radiation is a 5-day a week for 6 weeks proposition, there are a lot of things prepared ahead of times so that every day, I will get put in position, zapped and go on my merry way.

So, before the CT scan that day, which is one of the things they will use to figure out just where to aim, I lay on the radiation table, (with a nice warm blanket, why are doctor's offices so cold!?), with one efficient technician on either side, who molded a head rest under my head, and then they slapped the very warm mask over me, snapped it to the table with about 10 snaps, and molded it around my face. Then they put wire over the incision sites so the would show up in the scan, whooshed me through and I was done. I could see through the mask, (it's mesh), at least with one eye.  The mask was smashed down so tight I didn't try too hard to open the other one. It isn't comfortable, really, and I am reasonable enough to know that what has to be, just has to be done.

They colored the incision area for better viewing through the mask.

And the stuff didn't come off when I washed my hair this morning!

Soon, the 6-week mark will be here and the doctors want to start treatment as close to then as possible.  I can't decided if I want time to go quickly or slowly. Either way, the time will come and then I probably will want time to go quickly.  So, if the end of summer comes in a hurry, 

you can blame it on me.

I've been hoping I would be able to comb my hair into something looking like I was used to, but a huge healing incision on top of my head isn't helping. Clips in my hair, pull. So, I've finally decided to come out of hiding.  My latest housekeeper is back to her regular life, after helping us out for over a week, so we took some pictures at the airport.

On a special note, to all those who have sent cards and letters, and things, thank you very much, they are greatly appreciated.

13 Comments:

gkey said...

Dear Out of Hiding,

Thank you for this very good & informative post. It is so great that you seem to have a clear 'picture' of what is going on and what will happen when the treatments begin. Do you remember what we learned in the Bradley child birth classes once upon a time? "We often are the most afraid of what we do not understand."

You look really good Shelleykins,

in the picx and IRL. Special to visit again teh other and & see B also!

This curve in the road was not one you could have anticipated, but I have high admiration for now you are taking it. 

love, 

Going on One Step at a Time

in 

NE

June 23, 2012 at 8:52 PM

Anonymous said...

You are beautiful, my friend! I, personally a very thankful for the nerds & perfectionists...and are glad you are in their care. Thanks for the update and pics.

Brandie

June 23, 2012 at 10:14 PM

  

Anita said...

Yay for you! And for BK! And for you all! Sending a big hug!!!

June 24, 2012 at 4:37 AM

Lanae said...

Good to 'see you and so good to know that you are in safe excellent hands. However, the time goes, fast or slow. I hope it all goes well and smooth as possible for you.

June 24, 2012 at 1:03 PM

The Chairman's Wife said...

Sure have thought of you often. So glad you had reinforcements come in from WI! Hope the time goes as fast or slow as it should. Take care of yourself!

June 24, 2012 at 3:12 PM

Listy said...

Hugs. To each and every one of you...Ly CBL

June 24, 2012 at 9:45 PM

Heidi said...

Summer is coming in a hurry, though I'll probably want time to pass slowly again when we finally get to my home town. Experience gives words new meaning and depth doesn't it. So glad you are improving every day! Nice to see your smiling faces. 

June 25, 2012 at 4:28 AM

The J's said...

What a great picture, and Shelley you look wonderful. It ws great to see Bonita while she was here, too. Hope to stop by & see you soon again!

June 26, 2012 at 5:05 PM

Darcie said...

So glad to come back from vacation and see your smiling face! You look wonderful, and wow the things we learn when life takes us on a detour. Thankful to those that walk along beside us and help us through it all!

June 25, 2012 at 5:42 PM

Dan & Cyndie said...

So thankful to you for sharing this, my dear friend. Love the photos...you all look wonderful :) 

Your spirit toward you current direction is really inspiring. take care & I'll be seeing you soon, 

Love & hugs, Cyndie

June 25, 2012 at 7:52 PM

Gramma's Corner said...

Andrey wrote..."Hi, Shelley and Jim, thanks for sharing this about treatment and all, do think of you so often and will continue to as you start the next part of the journey with care."

June 27, 2012  at 8:08 AM

Gramma's Corner said...

Jane wrote..."Thanks for sharing your story.:

June 27, 2012 at 8:09 AM

Janis said...

You look about 16 with your hair in a braid over you shoulder! Jim looks happy to be sitting by such a cute young thing :) Love that picture of the 3 of you!

June 28, 2012 at 1:12 AM

Recovery Is A Lot Harder Than It Looks

 Tuesday June 19, 2012

Thanks to all those with suggestions for the sticky hair problem. I decided to take my mom's advice which was something to the effect of, "What are you worrying about your hair for anyway, 

leave it alone!" So I am. 

I think in my exuberance to get back to 'normal,' we spent more time and effort on it than we should have. Yes there is still goo up there. Yes, it looks pretty greasy and I dan't do much with it. So far, I just comb it into a braid on the side. The heaviness of having it up with a clip in is a big much yet. 

It seemed like the scrubbing and showering were doing more harm than good, when the whole idea si to let the head heal.

So, vanity has to go out the window for awhile.

It is a rather good thing our eyes are for looking out at other people rather than at ourselves.

And let that be a lesson to ya!

At 4:00 this morning, I woke up feeling different. I was calm in the darkness and really awake. I felt more like ME than I had for man a day. Jim woke and mumbled, "it's not time for a pain pill". It was past time, but I didn't want one. I didn't have a headache, and I wanted to enjoy the drug free sensation a while long

I did go back to sleep, but woke again, and STILL no headache, but my keepers...erm...family insisted I take one as a precaution at breakfast, which I did, and had a lovely morning nap. After that, I had a very nice lot of lovely company. I took another nap, since being up, very often gives me a headache and another rest. 

So, here I am at the end of a more eventful day than usual, spending an unusual few minutes at the  computer, after which I will lie down, not to test this headache free period too far. 

I feel better, I feel like I've turned a corner.

However, when feeling this good there is too much temptation to do too much.

So, That's all Folks!!

By the way, the photo at the top is titled

"Wildflowers by the Yellow Wall?  

8 comments:

Raimie said...

Dear Auntie Shelleykins, 

"It is a rather good thing our eyes are for looking out at other people rather than at ourselves." Is a beautiful thought, especially as the view is usually better than way anyway.

The photo is beautiful and I hope to see your sunshiny room sometimes soon. Enjoy feeling like "you" that's the best any of us can be, after all.

Love, 

Looking Out in NE

June 19, 2012 at 7:24 PM

Renee said...

"Wildflowers by the Yellow Wall" might very well win an award if you entered it in a contest! Lovely! I just have to say I can simply hear your Mom saying, "Why are you worrying about your hair anyway, leave it alone!" Your expression about our eyes being made for looking out at other people rather than ourselves is a great one. Wow, I feel like I have just attended a class on common sense philosophy! I am HAPPY that you had a good day!! Hoping for many, many more!!!

June 19, 2012 at 7:51 PM

Luanne said....

It wasn't just your sunny wall that cheered your tired friend today. Thnaks!

June 19, 2012 at 8:40 PM

Anonymous said...

So glad yoiu had a better day and hope that is a new trend for you!

John and Sandy

June 19, 2012 at 10:02 PM

 

gkey said...

Dear Sunshine, 

Love hearing about Good days on this part of your healing journey.

I am ANXIOUS to come and see the yellow wall...and you!

love, 

Flowers & Yellow are the

best 

in

NE

June 20, 2012 at 12:21 PM

Anonymous said...

LOVE this post and am so glad you had a good day!!! Hugs!! Love, Janet

June 20, 2012 at 10:52 PM

Dan& Cyndie said...

been gone a few days so just checking n:)

and YEP, I am still loving that yellow wall!!!!

and you, my dear friend.

Cyndie

June 25, 2012 at 12:18 PM

The J's said...

That looks so nice & cheery!! Aren't we glad for those welcome corners!

June 25, 2012 at 5:08 PM

Hair Goo

 Friday, June 15, 2012

Once upon a time, there was a product on the market called Dippity Do, and when I just looked it up on Google, you might still be able to buy it. Anyway, there really are a number of hair gel products on the market these days, but I remember Mom sticking her comb in the Dippity Do jar before she slicked our hair down when combing. It probably helped our thin fly-away hair stay our of our faces.

One thing that does not work well for hair get, or perhaps it works too well, is the antibiotic ointment used on my incision.  We are having an awful time getting it washed out. The doctors said diluted hydrogen peroxide would work, but the way that is going, I'm still going to have a stickly problem for another couple of weeks, It helps, a little at a time. 

So, if anyone out there has some idea of what might cut this Vaseline type stuff out of my hair, bearing in mind that I have this incision and a tender head, I'd like some ideas.

8 Comments:

Renee said...

This is just a random thought, but I wonder about Dawn dish soap? It is good for cutting grease. Maybe it would be too strong for an incision?

BTW...I remember Mom using Dippity Do on us too!

June 15, 2012 at 10:51 PM

The J's said...

Oh yes, Dippity Do!! LOL! Did you try the olive oil/ishsoap route? I have some *N dishsoap that would be gentle & cuts grease well that you could try if you want!! Let me know!

June 16, 2012, at 10:49 PM

Anonymous said...

Thanks for writing with such honesty, Shelley. Your "marathon" entry is touching. I'm sorry you have to become so sick for me to even find out you HAVE a blog, but I'm appreciated reading it and a few of your old entries. You really ARE a writer! I'm thankful that Bonita is there with you. Please give her my love and thanks.

June 17, 2012 at 1:24 PM

Anonymous said...

We used to use peanut butter on kids with gum in their hair. I don't know if that would add to the mess or help get it out. What about plain ole vinegar? I used to rinse my hair in that to get all the soap out and it works for getting goo off other things, so it might work. Good luck. So glad Bon is there, for how long?

June 17, 2012 at 11:47 PM

Grumpy and Dayka said...

I would wonder about Basic H from Shaklee

And yes, we used Dippity Doo, too!! And I used it on my poor daughters. LOL

HUGS to you, Shelley

June 18, 2012 at 8:55 AM

Unknown said...

I remember Dippity Doo. I would try the olive oil or dawn dish soup. Pops had much shorter hair we probably be having that problem with his incisions also. Vitamin E seems to be doing good for him. 

Hugs, Jeanne

June 18, 2012 at 4;16 PM

Raimie said...

Dear Shelley, 

No ideas for you problem but it sounds like you've got a few things to try with the about comments, Is you incision very painful?

I hope this "headache" passes.

Love, 

Raimie

June 18, 2012 at 11:13 PM

gkey said...

Dear NOT so dippy, 

I am not sure what to recommend here. WE have used "dissolvit" (walmart?) over the years. I though it had some harmless sort of ingredients...but haven't needed it in a while so couldn't check that. 

My child-hood hair combing memories involve Mom using "wave-set" on me. It came in a tallish sort of container,. Light lavender in color , and the comb fit right down inside. I can almost remember the smell even.

love, 

There will be good-hair-days again some day

in 

NE

June 19, 2012 at 9:11 AM

Getting Ready for a Marathon

 June 13, 2012

I have a lot of things on my mind today, which means this post will either be long and take a while or I will get tired, and much less information will be posted.

Today Bonita comes to help out.

Yesterday was my first post-op appointment in Omaha. The incision healed well, the staples were taken out and now I can think about doing something with my hair except a braid down the side. Everything seems to be proceeding normally. the forehead part is healing down well and the inside as far as they can see is healing like it is supposed to, also.

I don't get as tired as I did at first, but now I am on a "do a little more activity every day" mode, but carefully.

Several of my friends are going in for fitness these day, running, biking, and signing up for runs and marathons. So I'm going to join in, too. I'm getting ready for a marathon that in six weeks or so is going to do things to my body that I can't even realize right now. I'm not sure I even want to imagine. In some ways getting ready for cancer treatment is like getting ready for a big race. I have to eat well with extra protein. I have to make progress every day with my physical activity. I need to get as well as I can get before treatment starts so I can feel as well as I can going into it. 

So, right now, everything is on track. I will have my chemo and radiation in Kearney after all. What I help that will be for the toll on my body! I see the medical and radiation oncologists next week.  The week after will be follow up appointments again with both surgeons this time. And the next week, I go see the dental oncologist for dental maintenance and protection. Because...they have extended the realm of radiation larger than at first. They plan to irradiate the lymph nodes in my neck. So, they are talking about quite a large area, from my forehead, down to my collar bone, including the neck.

The main side effect, besides the usual ones of radiation, is the frontal lobes of the brain when radiated cause fatigue which could last up to a year since radiation does not stop working when treatment does.

As I understand it now, the radiation and chemo will take place at the same time. We'll know a lot more once we visit with the oncology doctors. 

In about six weeks from surgery. No dragging feet, just keep on marching from step to step.

I really appreciate everyone's confidence in me and my ability to keep positive. You people are going to make it very hard to me to wallow around in self pity and complain. 

Do I worry about what if they don't get it all? What if it comes back? What if is spite of everything that is done and what everybody says, it comes back? I do a little, a very little.  I can't see wasting what energy I have worry ing about things that might never happen And if they, well we'll all cross that bridge when we come to it. I might still be a bit in the 'denial' mode. But, I do know that I can accept most things as they come along. Faith and Trust go a long way in helping me be who I am.

Blogs can get very boring sometimes without any photos, and these were taken by the waiting party in the surgery waiting room during surgery. It looks rather like they were having a party in there. 

It was so nice for Jim and Lynette to have helping watchers. 

They now have electronic boards in the waiting room so family can see the progress. I'm the first one. 

And a nice little note for my room!

11 Comments

Ruth said...

Shelley, I so admire your perspective and your ability to not worry. I a terrible worrier and I hat it! I like some wisdom in a book I'm reading and hope I can learn from it. It says worrying about tomorrow will rob the job of today. And it is arrogant to worry...like thinking God doesn't know how to do His job. So glad you have such great support. That will help you so much. And it OKAY to eel a bit sorry for yourself once in awhile! Take care!

June 13, 2012 at 11:53 AM

Dorothy said...

"Faith and Trust go a long way in helping me be who I am." It's beyond the scope of m imagination (as Anne would say) to think of you without incorporating those two values into my perception. You can be sure you'll have a pack of cheerleaders on the sidelines when you start your marathon.

June 13, 2012 at 12:38 PM

Renee said...

There you go again, Shelleykins, writing a blog post that is inspiring and brave and so very forthright and honest. Just like YOU are....and we love that about you.

I am tickled to pieces to think about Bonita being there. How smart of you to think of this "race" like a marathon..no body gets one those accomplished with t/e one step and then the next step process. I'm joining Dorothy's cheerleading section!!!

June 13, 2012 at 1:25 PM

Renee said...

I liked the pictures you added, too! Pictures always spice up a blog post!!

June 13, 2012 at 1:26 PM

Elaine T. said...

I'm you lost your gold 'headband" of staples and all is healing nicely. Keep jp the great work and gearing up for treatment. Always remember "This, too, shall pass." 

It's nice you can do it in Kearney. Was that gold on your walls the new color? I noticed it, and love it, but wasn't sure if it was something new or I'd just overlooked it before! So glad Bonita can be with you a bit. Take care.

June 13, 2012 at 9:38 PM

The J's said...

So glad Bonita is coming! I'm hoping to get in to see you again, soon.

June 13, 2012 at 11:07 PM

Lanae said...

Glad Bonita can be there, too.

And I have a ton of admiration/respect for your attitude/spirit toward this. I think it's a good idea to think of this liek running a marathon, too...an apt analogy. The preparation, both physical and mental...and then the race where the mental matters every bit as much, if not even a big more, than the physical, to help you endure when the going gets tough and it's hard to keep going. I think you are well-prepared mentally/spiritually, and than will help carry you through!

June 14, 2012 at 5;36 PM

Anita said...

I'm going to be in the cheerleading section, too!:)

Like those pix! It does look like they were having fun!:) And I like that message board they have up - what a great idea!

June 15, 2012 at 3:58 AM

Luanne said...

Hi Shelley!

I am home again. Thought about you everyday, just couldn't read your blog.. (sorry I missed the painting!!) Rod said it was great to see you at Bible study. See you soon, Lu

June 15, 2012 at 4:54 PM

Raimie said...

Dear Aunt Shelley, 

Oh my, dear, dear, lady! You've crafted a very touching post once again. May you have all the strength you need to go thru this.

Love, 

Raimie

June 18, 2012kj at 11:16 PM

gkey said..

Dear Gearing up, 

These days would be full & flying by as you prepare for this leg of the journey. 

I am glad you are writing about it all. It is good for you and helps the rest of your 'team' as well. 

Love 

Faith and Trust are the best 'running-mates'

in 

NE

p.s. This is my 3rd attempt to make this comment post. Hope it doesn't finally appear 3 times!!

June 19, 2012 at 9:18 AM

Settling In

 Sunday, June 10, 2012

I have had some eventful, uneventful days. Having a housekeeper and daughter suddenly decided to paint the paneling, (in the living room) I've had some lovely long naps in my bedroom instead of the living room. So, Now we have some new color in the living room, and my daughter instead wanting to paint again for a very long time.

I am continuing to sit, eat very nice things people send in (thankyewverymuch) and have naps. I am slowly learning to type on this laptop, which is a very annoying project. If I do too much of anything including have visitors and talk on the phone, which I LOVE, I get too tired. PLEASE don't stop calling and visiting. I'll just nap later, or I already have had a nap.

So, today, I have three naps, 6 visitors spread out between naps, three meals and two snacks.  I'll have one more snack with the evening meds.

I am feeling pretty good right now. Everyone comes in and says how GOOD I look, however, the better I feel the more I do, and then I will feel worse tomorrow. I don't want to spend too much time typing here either, because it is tiring.

It is amazing how tired I can get reading a few pages in a book, or reading on the computer. I had no idea it took so many muscles in my forehead to focus my eyes. I read my morning comics, if I'm up to it. I look a little at facebook and every couple of days look at my email. I have to decide sometimes what are the most important things to do, because I can't do all of even these little things all the time or all at one time.

I'm not finding it very easy to be a couch potato. I'm not finding it easy to sit down and watch other people do my work. Next on my list is to not let things like that stress me out. 

Note: (July 10, 2022) Jim has never been a fan of painting paneling. I had wanted a change in the living room for some time but knowing Jim didn't like it I hadn't pursued it. I gave in to the pressure of the "housekeepers" at the time and Jim has never been truly reconciled to the change.  We don't talk about it. :)

Note 2: (also July, 10, 2022( One of the things I have learned over the years after this surgery and other surgeries later, is that surgery takes a lot out of you. It takes anybody a lot of energy in the healing process which involves a lot of resting and no energy to do anything else. I think people (I know I did) don't take that into account.

10 Comments:

Dorothy said:

Boo on having to be a couch potato (I don't think I could enjoy it very long either,) but YAY on feeling pretty good! Keep up the good work!

June 11, 2012 at 7:25 AM

MEJ said...

I would not enjoy being a couch potato either, so I have total sympathy for you!

I wondered if you had a lap-top, thinking that would be much easier to be on than the computer!! It took me a while to get used to mine, but since it's all I've had for 2 years now, it feels pretty normal now. I do prefer to use a mouse with it tho, hate that touch pad!!

I'm anxious to see your new paint! Wow, how exciting!

June 11. 2012 at 8:25 AM

Bonita Sue said...

Save some jobs for me! See you Wednesday, I'm excited to come!

June 11, 2012 at 8:49 AM

Gramma's Corner said...

Plenty of jobs left!! Lynette's good, but young and it doesn't come very naturally to Jim, and I'm the one that isn't picking up the slack, and there is plenty of that around! :)

June 11, 2012 at 10:27 AM

Grace Kracht said...

So good to read the last few entries, Shelley - as have been thinking of you so much.

Hope you continue to get stronger every day & the fact that you are not liking to be a 'potato' is nothing but a GOOD sign! :)

June 11, 2012 at 10:57 AM

Renee said...

Hi, Shelley....so good to catch up a little with you, now that we are home from Idaho.

Oh, wow, I can imagine being a couch potato would be fun for about one day and then not so much. Baby steps will get you back to the old "new" you!! I'm happy that you are allowing some time for blogging!!

June 11, 2012 at 1:32 PM

gkey said...

Good Morning ShelleyKins,

You are so not a slacker....and so those would be 'trying' days in that respect as well as just the 'going slow' part.

It will be lovely to have your BonBon there with you awhile :)

love, 

sending well-wishes

in NE

June 12, 2012 at 10:27 AM

Anonymous said...

Shelley, I've not "stopped by" the blog for too may days, but please now it's not because I wasn't thinkinb about you1 You are on my heart and I pray for you...and your kiddos and Jim.

You are a gracious servant-heart Rest and soak in the blessing that comes from being served. You need some help right now and it is the Lord's great pleasure to bless you this way - so put the guilt aside and DELIGHT in Him!

Brandie

June 12, 2012 at 12:36 PM

Anonymous said...

Shelley, so glad you are getting stronger each day. What a privilege to have Bonita coming to be with you :) :) Healing thoughts headed your way daily.

Margie

June 12, 2012 at 2:46 PM

Raimie said...

Dear Aunt Shelley, 

I REALLY have been here reading your posts, just haven't got around to leaving comments. Not very nice of me, I know. We are settling in to our Summer routine to hopefully I can get busy reading the blogs I love.

Glad to hear you are settling in at home for you Summer routine...tho it's surely not the routine you expected!!

Love, 

Raimie

June 18, 2012 at 11:20 PM

Dear, Dear Friends,

 Thursday, June 7, 2012

I am very, very, very, (insert appropriate number for verys), thankful for all those who have checked this blog the last few days. It was such a pleasant thought to think of all those people thinking about me. Ad then at the end of the day to have the comments to listen to as I settled down for the night in the hospital.

Being so ill in the hospital was rather a surreal experience.

I was generally wakeful between 1 and 3 AM and at that time the PCU floor was very quiet. I could look out of the window on one side of an open ended box, and see the cool white lights that matched mine in the other sides of the box, for a few floors up and down. It felt a bit like floating in space with no time or dimension. 

So, dear ones, Stage two on the the journey begins. Surgery is over, recovery begins.

Recovery is boring. It means parking my carcass on the couch and leaving it there. It does not mean I can get up every little bit and put something away and sit back down. I tried that on the first day and crashed and burned painfully. So, today and yesterday, here I am, sitting on the couch, napping, eating, pill popping, relatively pain free.

People are working around me, and I'm trying not to feel guilty.  I feel like I should be doing something. Anyway, I am ready to go back to regular blog programming. I'll still keep this updated oftener than usual, just not every day.

Tomorrow is a very special day in my world, blogging or otherwise. So, we are going to celebrate our 25th anniversary while I sit on my very nice couch and recover.

And I go to the doctor on Tuesday, hopefully to have the staples removed from my head then.

14 Comments:

Ruth said:

Enjoy your couch and let people pamper you...you certainly deserve it! Hope every day is a better day.

June 7, 2012 at 9:22 PM

Anonymous said...

Sit! Stay! Heal! Thinking of you and knowing how hard it is for you who is a caregiver, to be on the other end of this. Love you outlook! Keep you knees bent and your chin up. Lynn and Jeanne

June 7, 2012 at 9:4 PM

Brenda said...

I am so, so, happy your surgery went well. Have thought of you every single day. I think tomorrow is a special day for a special person, who incidentally, I have never met!

June 7. 2012 at 9:49 PM

Bonita Sue said...

May I be the first one to wish you-- happy 25th anniversay!

June 7, 2012 at 9:54 PM

Bonita Sue said...

Oops--anniversary! So that's why they have the preview option.

June 7, 2012 at 9:56 PM

Dorothy said...

And may I be the second to with you HAPPY 25TH ANNIVERSARY!..."to have and to hold, from this day forward, for better or worse, for richer or poorer, in sickness and in health, until death do us part."

Love you both dearly

June 7, 2012 at 11:16 PM

 

gkey said...

Dear, on the eve of your 25th Anniversary, 

I have been waiting for this, to wish you Happy Anniversary...A special day indeed.

Certainly you are proving that "in sickness"...part of your vows now.

Good night.

June 7, 2012 at 11;28 PM

Maxine said...

Wishing you both a very happy Anniversary!! I know this is not how you would have preferred to spend it, but we (and I know you) are so thankful that you are here & able to celebrate a special anniversary!

Try to enjoy the pampering-I know how hard it would be. But you DO have a lovely couch to enjoy it from!! Hope you have a good weekend, see you when I get back!

June 8, 2012 at 8:12 AM

Dan & Cyndie said...

Oh, what a special anniversary!! Happy 25th!!! Others have better words about you 'couch mode', but I so appreciated the though above "keep your knees bent & your chin up." :)

love you, Cyndie

June 8, 2021 at 8:38 AM

Anita said...

Happy Anniversary! :)

June 8, 2012 at 9:02 AM

Barb from Minnesota said...

I've been reading your blog, since  friend/relative told me about it, but decided that I just have to comment, too.! I hope you have a wonderful anniversary, in spite of your "condition" right now. I, too, like the one about keeping your knees bent and your chine up! This is hoping that you will improve quickly , and can soon put this "experience" behind you, but keep the positive lessons learned, through it all. May we all learn from what you are sharing with us. 

Barb

June 8, 2012 at 10:11 AM

Darcie said...

SO very glad to hear that you are back home! Now you get to know that couch up close and personal. ;-) Make that couch your new best friend! In all seriousness...rest while you can, your body needs it, even if you mind is telling you otherwise. Once again...glad you're home! (((hugs))

June 8, 2012 at 11:04 AM

Darcie said...

I am not just reading the about comments and realize what you special day is.

HAPPY 25TH ANNIVERSARY my friend!!!!

June 8, 2012 at 11:06 AM

Anonymous said...

Happy Anniversary, Jim and Shelley!! Didn't know we were married the same year. We will celebrate 25 years in Sept.

You have been in our thoughts and prayers so much. So glad the surgery went well, you will continue to be in our thoughts and prayers as you face the days ahead. 

Love to you both from Arizona,

Varrel and Sandi Herndon

June 8, 2012 at 5:28 PM

I Can't Smell Anymore...

 Wednesday, June 6, 2012

There was a photo on someone's blog this spring of a little girl joyfully lifting up her face to the sunshine and lilacs.

I didn't smell the lilacs this year.

With all the lovely and beautiful things that bless my life, smell won't be one of them, not every again.

You don't think about how much you use it until you lose it.

I remember walking by the irises this spring and thinking, "I don't smell those."

But, I thought I would, I really did, I though this thing in my head would someday succumb  to antibiotics and my life would be back to "normal" again.

But it won't.

I won't smell flowers again.

I won't smell dirty diapers again.

I won't smell the fresh "after the rain" smell.

I won't smell the lovely smell of wood smoke, or burning in the kitchen, or skunks, or natural gas.

Once the olfactory nerve is gone--it's gone.

But I have a lot of other things.

I can see, I can here, I can live. I have family, I have friends.

I can feel the warmth of sun on my face and I can remember...

I can remember that I loved to smell.

And I didn't take that for granted.

10 years later:

See below the comments

13 Comments:

The Chairman's Wife said...

Though we enjoyed and appreciated guest writers, it is very comforting to hear form Gramma herself! So sorry you have to go down this path without smelling the roses or anything else for that matter, but you have the gift of life. And that's what matters most. Thinking of you often...

June 6, 2012 at 9:46 PM

John and Sandy Linder...

Beautifully put! Though we do not know you very well, we are rooting for you.

June 6. 2012 at 10:01 PM

Dorothy K said...

And...you can write!! Shelley the Writer is back and it makes us all happy! Who'da thunk it? A week ago this morning in ICU with a ventilator tube down your throat, and today you will be watching another sunrise out you kitchen window.

And we are thankful.

Dodie,

June 7. 2012 at 6:15 AM

Ruth said...

So glad you are home and BETTER! So very sorry for you loss...but maybe your other senses will learn to compensate more...remembering, feeling, appreciating. We take way too many things for granted in this precious life.  Wishing you a speedy recovery and bright days ahead.

June 7, 2012 at 9:34 AM

gkey said...

Dear Sensitive in all the ways that matter most.

Tears of sadness for what won't ever be the same for you again. Mostly tears of JOY for what you still have and especially because al the ones you love you, still have YOU!!

Hope to come visit tomorrow, have a wonderful day today.

love, 

Remembering 

in NE

June 7, 2012 at 11:39 AM

The J's said...

I'm just so glad to have you back at home with us, on the blog--being in your place!

As painful as they are, and as sorrowful, things like this are good reminder to not take things for granted and I want to be more careful not to take my friends and special friendships for granted.!!!

June 7, 2012 at 1:54 PM

The J's said...

Oh yes, and the flowers are lovely, smell or not!! :) (But, I AM sorry for you loss of that sense!)

June, 7, 2012 at 1:59 PM

Gramma Lorna and Grampa Garland said...

So glad you are back home and are able to write again!! Very well put and glad for all the things tyou didn't lose!! Our thoughts go to Holly T. and her family since her brother-in-law was hurt so terribly bad. We are thankful for what we have!! With Our Love and Care!!

June 7, 2012 at 2:20 PM

Lanae said...

I'm sorry for what you've lost too...but as you say, there is much you haven't lost and perhaps things you have gained. Rich in what matters most....

Glad in any case to read a post from you!

June 7, 2012 at 8:12 PM

Huisman5 said...

It's so good to see your notes, Shelley. Now you can stop and "see" the flowers. Something we all need to take time for. We maybe just smell them quickly in passing, but to stop and see things in life's journey brings so much depth.

Love, from our corner, 

Lori, Wayne and Family

June 7, 2012 at 10:38 PM

Dan & Cyndie said...

Great to hear from the Gramma herself!!! and so very thankful to have you right where you are...HOME!!!!

June 8, 2012 at 8:21 AM

Anita said...

It like how you ended this post, Shelley! I'm going to love to smell from now on!!! xo

June 8, 2012 at 9:01 AM

Raimie said...

Dear Aunt Shelley, 

This is one of those moments where I lack the words to express my thoughts...How to be a comfort to you, my auntie...Maybe, just saying I love you and that my thoughts are with you every day on this journey will have to be enough.

Love, 

Raimie

June 8, 2012 at 11:26 AM

10 years later:

I get asked often if my smell has come back. It hasn't. It won't.

 In these past couple of years marked by COVID-19 in which a number of people lost their taste and smell there have been a lot of articles about what the loss of the sense of smell can have on the quality of life. 

From an article in the New York Times

"Everything tastes like cardboard"

"I know what it should taste like, but I can't get there"

"The prospect has set off an urgent scramble among researchers to learn more about why patients are losing these essential senses, and how to to help them:

"Smell is intimately tied to both taste and appetite, and anosmia (no smell) often robs people of the pleasure of eating."

"Smell is not something we pay a lot of attention to until it's gone, Many people who can't smell with lose their appetites, 'There is no point in indulging in brownies if I can't really taste the brownie.' "

"My patients, and the people I know who have lost their smell, are completely wrecked by it."

And from some site called 'Advisory Board'

"And because smell and taste are linked, losing the ability to smell also impacts the taste of food. Research has shown the the tongue can taste salty, sweet, bitter, sour, savory and fatty. But some flavors like strawberry and chocolate, are experienced through retronasal smell, which requires the mouth and nasal cavity to work in harmony."

"..and I've had to rely on my spouse to sniff questionable chicken or milk nearing it's expiration date."

I don't think the 'ruination of my life' effect of my loss of smell happened to me because so many other things of my life were turned upside-down at the time.  The loss of smell certainly affects my sense of taste and that has caused me a very real sense of loss over the years, particularly at first.  I have gotten used to the way things are over the last 10 years and only occasionally do I think "I did not eat enough of that particular thing", and push it out of my mind. 

(Think--Big Macs and Thin Mints)

Of the list of "tongue tastes", I don't have salt or sweet, but I still have the others; bitter, sour, savory (umami), and fatty. Chicken bullion, soy sauce, butter and chocolate fit into one of the last two. It does affect what I want to eat.

My doctor told me that my brain would learn to taste in a new way, so some things do "taste good", but it isn't related to the "normal" way of tasting. I think my brain has decided that Chocolate is the best, due to the the fats and the endorphins.  I could eat chocolate all day, but it isn't very healthy. 

Textures are very important.

I have other problems in the eating department, but they are related to my dry mouth and swallowing issues, not the lack of taste. 

Home Again After A Big Week

 Tuesday, June 5, 2012

If yesterday was the valley, today was the mountain top on this journey. Shelley was released from the hospital this morning, and tolerated the three hour trip home quite nicely. When I talked to them a few minutes ago, Shelley was sitting on the couch talking to her friend Juli, who has arrived to help out. Juli brought Lynette home, also. Shelley also had a nice bath, and they attempted to deal with her hair. She spend the last week in a hospital, not a spa or a salon! The big incision, the tangles, the greasy ointments, the days of lying in bed all took their toll, but her hairdressers were working on it.  Pain pills and naps are still important features of life, but really , everything seems to be going as it should. 

I fear I may soon be losing my position as guest blogger, but as Shelley says, it is harder to think about blogging and computer work when you have sore eyes. I think you will be very soon be seeing a post from Shelley herself, though.

Someone has set up a "Google Calendar" for any who wish to help in any way, with meals, housework, companionship, whatever your talent is! I'll paste the link below. I tried it myself and got it to work, which is a minor miracle considering my limited computer skills, So I'm hoping it will work for anyone else who wants to access it. 

An added note: (June 5, 2022) The main incision discussed in the about was from ear to ear and coated in some greasy substance after sewn back up.  It was a real job to get it washed out.  Eventually the stitches worked themselves out, or Jim pulled them out since they were the kind that dissolved. Another strange thing were the hairs that got caught in the incision and would swell up and threaten infection, so Jim had to pull those out, too. I can't remember just now, but I'm fairly certain that my front hair was cut short.

13 Comments:

The J's said...

So glad to hear you're home Shelley! I'm looking forward to a visit. The Calendar is a great idea. I'm planning on filling some of those slots-(If I can figure out how to use it now!!)

June 5. 2012 at 10:20 PM

Anonymous said...

Hey, I can't figure out the calendar...it either opens to MY calendar, if I'm signed into my gmail account, or the the sign in page of google calendars. (I guess it's not like I'm planning to bring over a meat loaf any time soon..........so it's not really an emergency, unless some others are having similar difficulties.) But,...main thing....CONGRATS on getting home Shelley, KUDOS to Jim for standing by unfailingly, HUGS all the way around to the kids and grandkids, and THANLS

 from the bottoms of my heart to all of you who are helping out in the most amazing variety of ways. 

Love from Dodie

June 5, 2012 at 10:26 PM

Unknown said...

So glad to hear you are home, Wish I was closer to help out in some way, but I guess our part is just to keep praying that all goes as it should. Wish you a fast healing and it sounds like you have a wonderful help in family and friends there. Love Jeanne

June 6, 2012 at 12:47 AM

Bonita Sue said...

Guess what--this link to the calendar isn't really working, at least working right. The technical experts will work on it, and maybe later on you'll see a link that does work.

Bonita

June 6, 2012 at 7:46 AM

Lanae said...

So glad you're home, Shelley ! Looing forward to hearing from you. :))

June 6, 2012 at 8:19 AM

Renee said...

Oh, happy day!!

June 6, 2012 at 8:37 AM

gkey said...

Dear At Home again, 

What a week is was! SOOO glad to hear you are home & getting into the next part of this healing journey. It has to feel good t everyone to have you safely back in your own space. Glad Juli is there.

Will visit soon,

love, 

Just down the road east a ways

in 

NE

June 6, 2012 at 9:38 AM

Sharon said...

So glad you are home. Live too far to help much, but prayers continue you way!!!

Hugs!!!

June 6, 2012 at 11:17 AM

Anonymous said...

Welcome back home, Shelley. So glad to hear that you are out of the hospital and doing so well So, our Juli is down there with you huh? We will miss her tonight but so nice she is there to help you. Will be looking forward to when you are doing well enough to write on here yourself!! Darlene and Wayne Jensen

June 6, 2012 at 12:30 PM

Anonymous said...

Oh, Shelley, I'm glad for you to get home, but please let everyone pamper you. I'm sure that is not a bit normal, but from now on it is your new norm. Love you girl, Ann P.

June 6, 2012 at 2:55 PM

Luanne said...

So glad you are home! I am leaving for a week but when I get home I will be up. 

You are in good hands with Juli!! Hugs to you both. Love Lu

June 6, 2012 at 5;49 PM

Anonymous said...

We are SOOO GLAD that you're recovery is going so well so far....It must be so special for you to be home. Our thoughts are with all of you....wish we could visit too....but I think we might be just a bit too far away!!! Unless we can find a magic carpet like Mary Poppins!  :) If Juli is the Juli we think she might be....Give her a hug from us.

Jonny, Rosalie, Nathan & Jacinta

from Kangaroo Island

June 6, 2012 at 9:03 PM

Anonymous said...

SOOOOO very glad you are home. Will stop by soon. The calendar is still not working so I guess it will be a SURPRISE when I get to stop by!! Arlene

June 7, 2012 at 4:51 PM

The Roller Coaster of Recovery

 Monday, June 4, 2012

It seems like recovery never takes a nice gradual upward incline, but rather it's more like a roller coaster with a general upward incline. today was on of the valley days on the roller coaster of recovery. This morning they took out the nasal packing, which was a very painful process. Guess it was nearly unbelievable all that was up there in her head. Shelley's head is now having to adjust to those recently operated areas not being packed tight, and it is a painful process and the pain got ahead of the pain pills. She wasn't able to force herself to eat much today either.

They've been saying today that she could go home tomorrow, but as difficult as today was, there is a possibility that it might be postponed. It's a three hour trip home and that in itself is a major undertaking for someone with a sore head! 

Shelley's good friend Juli is going to come and help out when Shelley does get home, and that will be so, so appreciated.

So, that's the news for today. It's anyone's guess whether tomorrow night will find Shelley in Omaha or in Kearney. As nice as it is to go home, there's a certain security about being in the hospital when you're not feeling well.

8 Comments:

The J's said...

As much as we'd like to see you home again, Shelley, we want it to be the right timing. 

Not good to have needed to stay longer, or have to go back sooner than necessary either. Hope for a good night for you!

June 4, 2012 at 10:43 PM

Renee said...

Oh! I can imagine that nasal packing removal process was anything but pleasant and I know you were dreading it, Shelley! Ahh...but another step towards being well again. 

I totally agree about the security of being where the experts are when you are sick, so I hope they don't send you home too soon.

So happy Juli will be there to help out when the home time comes. A friend indeed is a friend indeed, the saying goes.

June 4, 2012 at 11;17 PM

gkey said...

Dear Rolling with the process, 

We know you are bravely doing the very best you can. Sometimes there just has to be these rough spots on this recovery road.

No hoping your night is peaceful and the morning brings fresh strength & healing.

Love, 

gkey & family

June 4, 2012 at 11:34 PM

Dan & Cyndie said...

Many thanks for the update. Healing is sometimes a very bumpy road...I agree with others that as nice as it is to be home, with the length of the journey, it's better to err on the side of caution. It would be a miserable journey back to Omaha if something came up.

With much love & caring.

Dan & Cyndie

June 5, 2012 at 7:57 AM

Anita said...

I was wondering how that 'unpacking' business went.... I don't think I've ever heard anything pleasant about such things. Glad it's in the past and hopefully today is bringing some better moments again!!

June 5, 2012 at 8:05 AM

Darcie said...

So hard when the pain gets ahead of the pain pills! Hope they give her all the time she needs to feel comfortable to go home.

June 5, 2012 at 9:09 AM

Ruth said...

And now I hear you're on way way home1 After yesterday's torture. I imagine you are happy to be out of there! Wishing you a comfortable drive home and days and nights of rest and healing. 

June 5, 2012 at 10:27 AM

Monica said...

As I read this my heart hurts for everyone involved! We're been in your shoes and it's NO FUN...Hope you find comfort knowing that there are those of us praying for you to keep finding the grace to persevere one minute at a time, one day at a time. Keep hope before you This too shall pass. LOVE AND UNDERSTANDING - The Hertz's

June 5, 2012 at 5:42 PM