Monday, July 21, 2014

Catching up the last 6 months

"The Big C's Gifts"

Someone emailed me the other day, worried because I had not updated my blog after my surgery.  I'm really sorry...but it's been a challenging journey.  It was much easier for me to do short updates on Facebook, than write blog posts.  But, I'm going to catch you up now.

The surgery was done Jan. 13th.  I honestly don't remember anything about that day.  I was in surgery for 13 hours and on full life support afterwards.  They did a full glossectomy ( removal of my entire tongue) and a bilateral neck dissection.  They removed 66 lymph nodes.  Pretty radical for someone who never smoked, barely drank and ate healthy the past few years.  They constructed a new tongue from skin grafts from my thigh and left arm.  They new tongue doesn't move and is just to fill in the gap basically.  They warned Danny that I might not wake up for a few days.  Apparently, I woke up the next morning and to their surprise were able to take me off the life support.  The 1st week in the hospital is a total blur.  They did a tracheostomy during surgery to help me breath.  And put a feeding tube down my nose.  Those were by far the worst part.  I couldn't talk at all...and didn't know if I would ever be able to again.  Respiratory therapists would have to come in every couple of hours and help me clear out the trach.  Some were more patient than others.  One didn't respond fast enough when I was choking and I actually stopped breathing and coded.  That was extremely scary and left a lasting impression of fear.   

As I healed and became stronger, they moved me from ICU to a regular room.  The swelling had subsided some, and I let my kids come visit.  They brought some of my artwork and get well cards and gifts from fellow artists, family and friends.  They hung them in front of my bed.  This was my healing wall.  I drew such strength from it everyday.  

I started feeling better and even started painting again in the hospital.  I wasn't able to do much except color charts and watching the paint intermingle together.  But, it didn't matter because just the act of seeing that paint on the paper gave me so much joy!

 Before I was released from the hospital, they got my pathology report back.  Of the 66 lymph nodes, only 9 contained cancer.  The PET and CT scans showed no evidence of cancer anymore.  But, because of the lymph nodes, I would still need chemo and radiation.  Apparently some of the cancer cells were on the outside of the lymph nodes, so they could be microscopically floating around my body.  I was relieved and thankful when they told me 35 radiation treatments and only 3 chemo treatments!!!  I improved faster than they expected and was allowed to go home a little early.  Before they sent me home, they put in a stomach feeding PEG tube and took out the horrible nose feeding tube. They tested my voice with a special valve for the trach. And although I was hard to voice was still there!!!  They gave Danny instruction for feeding me through the PEG tube and spent about 10 minutes teaching him how to manage my trach.

Now, Danny is a really quick learner but he hadn't really slept the entire time I was in the hospital.  Luckily my wonderful, incredibly generous brother in law recognized this and arranged for me to have private nurses around the clock at home.  What a gift and blessing!  A nurse showed up at my house at 10pm the 1st night.  I was having a hard time breathing and she stayed up all night with me.  Danny was finally able to get some sleep!  She became my full-time nurse and great friend!  Two weeks after getting out of the hospital, I was able to go walk the mall for exercise and felt great!

This didn't last long once I started chemo and radiation.  I swear they are harder than the actual surgery!  My 1st chemo, I actually painted.  But, the 2nd chemo...I slept.  I had to go to radiation everyday.  A big mask was made for my face and neck.  They wouldn't remove the trach because they said I needed it for radiation.  It turned out to be the largest hole in the mask...and helped me breathe easier during the claustrophobic radiation process.  I kept my eyes shut the entire time and just thought about everything I was grateful for.

After the 2nd chemo, my hair started to fall out.  Not in huge amounts, mostly around the back of my neck, and where it was dyed.  So, I headed to the salon and got a really short haircut so it wouldn't be that noticeable.

By the third week of radiation, I could barely walk.  My nurse would have to get me a wheelchair when I went to treatment.  I wanted to quit.  I couldn't believe how weak and sick it made me feel.  Danny and the doctors convinced me to keep up the treatment.  They started giving me extra IV fluids to help.  It helped enough that I felt I could keep going.  

They decided not to give me the third chemo.  My blood levels were too off and I was too weak.  Although I was worried that this might not irradiate all the cancer cells in my body...I was also relieved not to have to go through it.  I continued with the radiation.  I developed a horrible cough that could be heard miles away.  By the last day, my skin on my neck was black from being scorched.  Danny compared it to a rotisserie chicken skin.  They had a bell that people would ring when they finished treatment.  The staff would cheer and everyone would clap.  I didn't ring the bell...I just wanted to get the hell out of there!

Less than two weeks later, I was asleep when Fox, my cat jumped up and got in my face...then curled up on my chest.  While it might not be unusual for some's unusual behavior for mine.  He had been standoffish since I came home with the trach and loud cough.  I woke up freezing. The nurse took my temp and it was over 102.  I had to go to the ER, and was diagnosed with streph pneumonia. 

I spent 5 days in the hospital.  After I got back home, all I could do was sleep...night and day.  Danny started having chest pains a couple of days later.  My son Luke, drove him to ER.  He had a mild heart attack and they put in four stents!  I felt so bad that I couldn't be there with him.  He spent another 5 days in the hospital!  The Thompson family has definitely been through their share this year!!!

But, we are a strong bunch!  Danny is doing great!  He's returned back to work full time.  A few weeks ago, we said goodbye to my nurses who had taken such great care of me these past few months.  I'm feeling stronger everyday.  I still have the trach and feeding tube.  I still can't talk understandable yet, so everything gets written down to communicate.  I haven't taken any food by mouth since the surgery.  But, I'm not missing it.  We make nourishing soups and juices that I take through the stomach tube.  I still have the annoying cough that scares the dickens out of anyone around me.  So, I'm a little to self conscious to venture out much.  I'm taking it easy and concentrating on healing everyday.  

I'm cooking meals again for my family!  Even though I can't taste's something I really enjoy doing.  They tell you to be careful what you wish for.  Well, I used to wish to be thin and have more time to paint.  I got my wishes...just in a strange messed up way.  LOL  I've lost 90 pounds over the past year.  Only 20 of that was from proper diet and exercise, the rest was a side effect of this challenge. And I have more time to paint...and that has been glorious!  I feel like I'm producing some of the best work I've ever done!  

watercolor & acrylic

"Go Your Own Way"
watercolor & acrylic

This past week I was able to open my Etsy store again!!!!  I am getting used to my new normal.  I start back with my speech/ swallowing doctor later this week.  I will probably always be hard to understand when I talk...and might not ever master the art of swallowing again.  I have tons of scars...and my face and body are forever changed.  But, that is all okay with me.  Danny tells me I'm beautiful everyday.  :)

My six month PET and CT scans came back great.  No cancer!  Doing a happy dance!  I have my life back thanks to brilliant doctors, caring nurses, loving partner, supportive friends (some I've never even met in person) and family!  Everyone tells me I'm so strong.  It's a team effort.  I couldn't have made it without all of them!  

Despite all of this...I'm happier than I've ever been!  Sure I cry a tear when I choke on water trying to brush my teeth.  There are frustrating moments...but they are just moments.  I'm damn lucky to be here...and I'm not going to waste a day!  There's so much to be thankful for!  So much love to give!  So many friends to make!  And of course....lots of painting to do!

Thanks for all your concern, prayers, positive thoughts, and magic.  You help me beat this everyday!

Much love to you,

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