Monday, May 18, 2015

Georgia on my mind

I'm back finally to post an update!  My last post was prior to my initial trip to Cancer Treatment Centers of America in Georgia.  My first appointment was in March.  I was scheduled for three to five day of appointments with various doctors for evaluation and testing purposes.  CTCA is renowned for their work treating advanced stage cancers.  We traveled to GA a little nervous and a little excited.  They had prearranged our lodging and had us staying at a nearby resort.  I was quite impressed, but with things so spaced out, I found myself more winded than normal as we walked from the parking lot up to our room or to the resort restaurant for breakfast.  I had to stop several times to catch my breath.  Also, the heat was making it worse.  Getting in the hot car seemed unbearable.  I was feeling faint and lightheaded.  We soon realized that my oxygen was dropping quite low when I exerted any amount of energy.  We went to urgent care on site at CTCA and I was eventually admitted to their hospital.  Because of all the tubes and things connected to me, I was not allowed out of bed without a nurse except to use the bathroom.  The pleural effusion issue on my left side was getting worse and needed to be dealt with asap.  The fluid pushing on my lungs was making it hard for me to breathe.  After consulting with a few doctors, we decided to have a Pleurx catheter inserted (in my side) to drain accumulating fluid, as needed.  I didn't like the idea of having a tube sticking out of my side but I did want to breathe so it was a no brainer.  It was a fairly simple procedure...I think!  I was asleep!  Fortunately, God gave me a highly accredited pulmonary doctor whom I've been extremely pleased with.  A week and a half in a hospital bed was not good for my back or my spirit.  CTCA is known for the comprehensive care they offer.  During my stay they provided massage therapy and music relaxation therapy.  The massage was great but I really enjoyed the music therapy.  They sent an acoustic guitarist to my hospital room and he strummed anything I requested.  He even came back again later to show me he had taught himself a song I requested that he didn't know.  After talking to him, we learned that he was a worship pastor at a nearby church.  Upon my release from the hospital, CTCA moved our lodging to their on site guest accommodations which was great!  Everything is under one roof so we didn't even have to leave the building to go to my appointments.  They set my room up with oxygen since I would be using it 24/7 for the time being.  They gave me a wheelchair to use because I was already weak going in, but after 10 days in bed, my back was not strong enough for much walking.

The days that followed were busy with appointments and tests.  I met my PEC (Patient Empowered Care) team.  This is my personal team of doctors who meet together to determine the best care for me in my particular situation.  I have a highly accredited oncologist, a naturopathic doctor, a nurse and a nutritionist.  Since CTCA provides comprehensive care I also have doctors and other medical professionals that I meet with periodically and as needed.  They include a chiropractor, a pulmonologist, a wound care nurse, a psychiatrist, a massage therapist and an occupational therapist.  Each one has exceeded my expectations.  Since our first visit was three weeks instead of three days, we'd often pass these people in the center and say hello.  Some have come to know us by name and we will stop and chat.

The tests I had included all kinds of scans and blood draws.  A Picc line was put into my left arm for infusions and future blood draws.  None of this was easy since I don't like small spaces and laying flat is difficult with a pleural effusion.  I made it through and made it home after the three weeks.  My first round of chemo had been the day before we left.  Twenty four hours later I received an infusion of vitamins and something call Nuelasta .Then we headed home.  I was happy to see home but was experiencing so many discomforts it was overwhelming.  Nausea had set in on the drive home, I was flushed.  I was hot.  I was cold.  I was an emotional wreck - crying for my mom!  During the night I would wake up my husband and call him by name (so he'd wake up) to help me go to the bathroom.  Twice, I called out for my mom instead of him.  In his groggy state, he'd say, "I'm NOT your mom!".  Heehee.  I was so weak I needed help walking to keep me stable.  I didn't know how I'd make it from one day to the next, honestly.  Even though loved ones were with me, I felt so alone.  I was desperate for encouragement.  Knowing that God was my source of life, I recognized that others could help me physically but He literally was sustaining me with every breath.  Having a pleural effusion, my doctor likened it to slowly suffocating.  It's scary to not be able to breathe very deeply because it affects talking, walking, coughing laughing, etc.  I started searching out scripture from the Bible relating to life, breath, health, and healing.  I wrote them everywhere I'd see them.  With the little breath I had, I spoke them out loud, claimed them as applying to me and thanked God for every breath, for His healing and for sustaining my very life.  I wrote my own declarations and every day, morning and night, I declared them along with the truth of God's Word in those scriptures I had written down.  I declared things like:  I am getting stronger every day.  I can breathe deeper every day.  Excess fluid is being dried up where it should not be.  My back is getting stronger. There were many others.  Even thought I felt so bad, I would try to get my mind off of it and think of things that were true according to God's Word...I am more than a conqueror, I am victorious, I am healed, I am rescued, I am loved, I am not alone, etc.  I sounded like a crazy person, but I would speak these aloud anytime I needed to and if that meant during dinner, then I'd do it.  My life depended on it.

I've had two treatments now and go back very soon for my third.  My second treatment was not as harsh as the first.  I was stronger when we went back the second time.  Instead of sitting in the wheelchair, I pushed it, using it for support (and for carrying all my stuff around like a bag lady!)  When I saw my pulmonologist on our second visit, he did an ultra sound of my lungs and saw NO FLUID!!  It had all dried up!  Humble tears streamed down my cheeks as the doctor and his nurses rejoiced with me.  I thanked God again for drying it up and healing me.  Remember my declarations?  My oncologist was very pleased with my healing progress after just the first treament.  He suggested a total of four to six treatments every three weeks.  After more tests, we'll determine where to go from there.

I could tell you story after story of the staff at CTCA going the extra mile, but this would be too long.  I'm amazed that there is really a place that exists where no one speaks negatively, even the housekeeping staff ask if there is anything they can do for you.  The staff are all non smokers, they don't wear perfume or anything scented (due to patient sensitivity) and I've had at least half a dozen staff tell me this is the best job they've had.  The majority of the cafeteria food is organic.  It's freshly prepared by chefs, not out of boxes and frozen packages.  Grass fed burgers, vegan burgers, mahi mahi, NY strip, whole wheat homemade pizza, all kinds of veggies, several pasta and veggie salads, etc.  Patients meals are free and care giver's meals are 60% off.  On our last trip my husband had a lunch of seared tuna, jasmine rice, mashed potatoes, steamed broccoli and a salad and drink for $3!  Also, while I was hospitalized the cafe would send up someone to give me a menu and take my order for each meal.  For breakfast I could order eggs, any style, or any style omelet, with all the sides to accompany it.  While I'm getting my chemo infusions they come and take my order for meals too.  (chemo infusions for me are about six hours)  During my last chemo, I even had a massage.  I'm amazed at the care given to patients at CTCA.  I'll post some pictures below (even one of me holding my cute grandson!)

I have already lost my hair and I wasn't sure how I'd feel about it but I have to admit that I'm enjoying it.  I don't have to wash it, comb it, style it or pack any hair care items when I travel.  I'd prefer to show my naked head everywhere but sometimes it gets cold.  Also, I have other "accessories" like my Picc line and oxygen and I understand it might be a shock to some people.  I have already had to explain to some kids at church that I'm taking some medicine that made my hair come out.

I'll keep you up to date as I continue to heal.  Please don't be afraid to ask me questions - I like it.  Thank you to everyone who visited me in GA (the Zapatas, the Tuggles, my grandparents, the Beccues, My uncle Ken, and our new friend, Devin) and everyone who visits me here at home.  Your visits are keeping me encouraged and lifting my spirits.  Also, thank you the your donations.  They have helped us tremendously.  We have to pay lodging, travel expenses and supplements (insurance doesn't cover these).  If you'd like to use Go Fund Me to donate, I'll post the link below.  I need to update the description on there since it doesn't reflect the change in my treatment now.

My heart is so full of love for all of you.  God is doing so many wonderful things and He has does many of them through you!  Thank you for caring about me.  Darlene