Tuesday, January 29, 2013

Getting Back to Normal

I know it has been a ridiculously long time since I posted.  I started blogging about my cancer journey as therapy, and later as a possible help to someone else.  That part has been niggling at my conscience lately.  
However, part of cancer recovery is what happens when trying to fit back into normal life.  It's a strange thing, but after focusing entirely on oneself for so long, it is time to think about other people and other things.  It is a disconcerting feeling trying to find what your place will be in the new life ahead.  I can't really remember anymore exactly all I felt, and it is very hard to describe, but I got depressed, frightened of the dark, and discouraged by how long it was taking to get better.
I didn't want to write these things, so I didn't post.  
However, life goes on, and the depression is past, I can sleep in the dark again, and I only sometimes get discouraged on how long this is going to take get better.  

So, where I left off at the end of October, I spent November working on swallowing water.  My mucus was mostly gone and my mouth was dry so I used a little spray bottle to keep my mouth moist and comfortable.  Salivary glands are affected by chemotherapy and radiation, and take a while to recover.  They keep your mouth wet without you thinking about it.  However, we will have to wait several months to know whether mine have been totally destroyed.  The amount of radiation they subjected my jaws and throat to, was right at the maximum for  permanent destruction.  The way I understand it, any more and the saliva would be gone.  So I am hoping that there will be some salvaged from the wreck.  
I gave up working on swallowing  sometime in there because it was just hurting me too badly.  I wasn't feeling that my therapist was helping at all and I just gave up.  Like I said before, I was rushing things a bit. 
Then finally in December, a wonderful thing happened.  My throat stopped hurting.  I could think about something else besides my throat.  I didn't have to try to stop myself swallowing.  I began to feel human again, instead of just a sore throat.  That month's trip to see the Omaha doctor was a ground breaking one.  I was smiling and my mucus had diminished to the point I could lie comfortably for the MRI.  

Another great thing was getting connected to the swallow therapist there at Methodist who works specifically with head and neck cancer patients.  She was hired to work out a plan to help people with swallowing problems after radiation.  She was cheerful, encouraging and helpful.  She made me believe I would be swallowing and even eating again.  
I started with drinking 5 mL of ice water, five times in a row, five times a day for two weeks.  Then we had another appointment with another modified barium swallow study which proved I should be able to swallow anything to the thickness of pudding.  So, I began to eat.  Yogurt, applesauce, mashed potatoes and gravy, pureed sweet potatoes and carrots, I was still tube feeding a couple of ensures a day, and looking to get my tube out in February.  

The January doctor appointment, which included a visit with the swallow therapist, and a PET/CT scan, involved a clean out of my sinus cavity, (which is an every appt, thing, likely for the rest of my life), an ecstatic session with the therapist who wants me to chew soft foods and gave me permission to schedule the tube removal. 
I had the PET scan that afternoon, and it is the one where you can't eat sugar or carbs for 24 hours before the scan and nothing except water for six hours before.  A radioactive sugar is injected into a vein and I have to wait quietly for an hour for the stuff to distribute itself over the body.  You can't  play with a phone, or read or do anything with repetitive motion because the sugar will collect there and could mask a problem, because the sugar also goes to where cancer cells are.  Then the scan is done.  It is similar to an MRI, but there isn't anything directly over your face.  It's more open and not so claustrophobic feeling.  And, thankfully, shorter.  

So, that brings us up to today.  My tube is really bothering me, my ears (which have been stuffed due to fluid behind my ear drums so I can hardly hear) are worse this week, but I have appointments made to fix them.  February 7th, I have my tube and port out. The 8th I consult with the ENT to have tubes put in my ears; the 12th I go to see the therapist again; and the 13th I have an eye appointment.  And, finally on the 18th, I see my chemo Dr. again.  I have clothes in the dryer, made lunch, and kept the fire going.  I have also spent the greater part of the day sitting on the couch.  There are parent teacher conferences tonight.  So, really my life is a mix of busyness and sitting around.  

Thanks for sticking by me.


(I may have to eventually not allow anonymous comments.  I am getting a large amount of comments that read like advertisements and thankfully most of them end up in the spam area.  If that happens, in order to comment you would have to have a google account.  It would just be a matter of having an email and password.  You don't need to make a blog.)

9 comments:

Brenda said...

You have been in my thoughts SO much!!!! I need to just WRITE a letter! Glad you are doing better, I was afraid it was a tough time for you since there weren't any posts. Shame on me for not writing! Truly sorry, and so happy for you that things are looking up.

The Chairman's Wife said...

So great to hear from yiu again! We hear via your relative, buy nicer from you directly! Wish you knew how many times you come to mind. You sound like yiu are making progress. Keep moving forward! We are rooting for you!

farmermarvswife said...

so glad to see a post again...have been wondering how you are doing...and sending little messages of encouragement..glad it sounds like progress is being made ... keep encouraged! a friend, Minnie

The J's said...

So glad to hear from you again! Glad there has been some face-to-face visits in-between :)
I don't know why some posts seem to get a whole bunch of spam on them...can you just put word verification on for your comments? I can't remember.

Heidi said...

Good to catch up with you again!
Thinking of you...

Darcie said...

So glad for the update. I sometimes retreat when things are hard too. I think we all have to work out our struggles, emotions, and such, the way that works best for us. I hope you continue to see signs of improvement, and remind yourself everyone's recovery is not the same...sometimes it just takes time to heal. Hope you are having sunny days in your corner of the world, to help chase those blue days away. (((hugs))))

Renee said...

Ohhh! Enjoyed a post from you again!!

Anne-Louise Olsson said...

Lovely to hear fomyou, and wonderful news on all the progress. Greetings from Sweden.

Anita said...

'Recovery process' doesn't even begin to cover it, does it? All the things I simply wouldn't have thought of and can't imagine. Big fat hugs!!!