Saturday, June 23, 2012

Cancer is an Ugly Word... 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 am still alive with most of my faculties intact, and I am 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 make a mask out of a plasticky-feeling stuff that is molded for my face and shoulders and then marked with the radiation sites.
Since radiation is a 5-day a week for 6 weeks proposition, there are a lot of things prepared ahead of time 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 they 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 had to open the other one. It isn't uncomfortable, 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.


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 pics AND IRL. Special to visit again the other day & see B also!

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

Going on One step at a time

Anonymous said...

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


Anita said...

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

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.

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!

Listy said...

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

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

The J's said...

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

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 for those that walk along beside us and help us through it all!

Dan & Cyndie said...

So thankful to you for sharing this, my dear friend. Love the all look wonderful :)
Your spirit toward your current direction in life is really inspiring. take care & I'll be seeing you soon.
love 7 hugs, cyndie

Gramma's Corner said...

Audrey 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"

Gramma's Corner said...

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

janis said...

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