A Beautiful Life

My visits to Cancer Treatment Center of America have become fairly routine.  My husband and I follow my schedule, going from floor to floor, clinic to clinic for my various appointments.  This visit was a little different.  I left my husband at home and took my mom.  Actually, she took me.  During my darkest times this year, my mom came over nearly every afternoon to help care for me, relieving my husband so he could work and do necessary errands.  She shared the duties with two lovely friends of mine.  When I ended up as an inpatient at CTCA in March, my mom and stepdad traveled to GA to see me.  My mom didn’t get to see much of the treatment center because she stayed with me in my hospital room. (Sometimes, despite our age, we just want our moms)  I really wanted her to meet the people who’ve helped me so much at CTCA and who spoil me with kindness and love.

We headed out bright and early in the morning with our sights set on Georgia.  We were so excited, we gabbed the whole trip about nothing and everything, giggling like little girls.  When we finally arrived, we unloaded the car and checked ourselves in.  We unpacked then made a quick trip to a couple nearby stores before dinner.  As soon as we walked into the café at CTCA, I spotted our friend, Jeannie.  She welcomed us with a smile and a hug. 

Soon we got more hugs from our other café friends, Alexis and Beverly.  After enjoying our meal we joined the others who were gathering to play Bingo.  Many people volunteer at the center to provide activities for patients and caregivers such as Bingo, art classes, craft making, etc.  It wasn’t long before my mom was yelling, “Bingo!” and picking out her prize from the donated gifts on the prize table.  We played again and she yelled “Bingo!” again.  I was so happy for her.  We played some more and then again she was yelling, “Bingo!”  This time my happy face turned into a scowl.  Seriously?  I was afraid we’d need to request security to walk us out (ha-ha).  Her prizes were piling up on our table.  After that, she finally let some others win and we all had fun.  We even discovered the ladies sitting next to us live about 25 miles from us!  What a small world!  After Bingo and meeting new friends, we headed out barely able to carry my mom’s loot!  We were dropping stuff and laughing so hard we were snorting.  Back at our room, we got ready for bed and lay down for the night.

The following day was my appointments.  We woke up and went to the café for breakfast, again seeing more familiar faces.  While I was standing in line, my chiropractor came in and saw me.  He came over to say hello in case he didn’t get to see me this visit.  I told him he was on my schedule in just a couple hours.  He said he’d just go back to his office then and practice until I got there.  When we finished our breakfast we went to the second floor for my follow up appointment at 9:00 with my wound care nurse.  She hugged me, happy to see me and was quite pleased with the progress she saw.  Then we were on our way to see my chiropractor.  He made necessary adjustments and discussed my progress and gave me some additional exercises to do each day to provide more mobility to my right arm.  10:45 nurse assessment next with my friends in Pulmonary.  Without my husband to direct me in the quickest way to get to the fourth floor clinic, I had to stop and think for a minute.  As I was thinking, up walks my friend from housekeeping, Commie.  She was showing a new employee around but took five minutes to walk us to the elevator that would open up in the fourth floor lobby – right where I needed to be in about one minute!  In pulmonary, a tech took my vitals then my nurse came in to hug me and ask all her usual questions.  Then right on schedule at 11:00 my pulmonary doctor came in.  Hugs again, then I introduced my mom.  After removing my Pleurx catheter last month the doctor wanted to do an ultrasound during this visit to see how much fluid had accumulated.  He asked my mom if she wanted to look at the screen.  He described what she was seeing: my lung, diaphragm, liver and the fluid…”Wow!” he said.  The fluid had diminished to about 10cc instead of increasing!  There was only a little bit of fluid there.  Not even enough to drain.  My doctor was pleasantly surprised. (Thank You, Lord!!)  (Happy dance!!)  We said our goodbyes then headed downstairs.  My next appointment was a lab draw on the first floor at 12:30.  That meant I had just enough time to grab something to eat.

  We saw Yolanda getting some potatoes to take back to her room.  Yolanda is having radiation treatments and has been at CTCA since October, I think.  She said she wasn’t feeling the greatest and potatoes was about all she could eat right then.  She was a little nauseous, tired and wasn’t able to taste her food due to her treatments.  I was glad to see her smiling and walking around.  She was doing her best to overcome.  After I ate we walked to the Peach clinic and checked in for my lab draw.  They called me back quickly and the nurse got all the blood he needed effortlessly.  Afterwards, we had almost an hour before my next appointment so we grabbed a drink from the coffee shop and sat in the gallery watching people and relaxing.  My next appointment was at 2:00 in the Magnolia clinic.  I checked in a little early and was taken back within five minutes.  Dee weighed me first then took my vitals as she always does.  The scale showed I’ve gained 40 pounds since my first appointment at the end of March.  Fantastic progress!  My mom and I are taken to a room where I wait to see my PEC team.  Right on schedule at 2:30 my oncologist, nurse and PA come in.  We all hug and I’m thrilled to see my nurse looking great!  She has been undergoing treatment at CTCA for cancer, herself.  She is beaming with joy and I have to get a picture with her!

My doctor is happy to hear how well I’m feeling and to meet my mom.  We discuss various issues and he gives me some homework.  He conducts his own survey and asks how we feel he is doing as my doctor.  I appreciate that he asks this directly.  He has a quiet confidence and authority that I value.  I can’t imagine being more pleased with his care for me.  He gives the term “health-care” the meaning it should truly have.  Next my naturopathic doctor came in at 3:00.  Another hug!  She reviews my labs and other info then asks some questions.  She makes some adjustments to my supplements then leaves us with a smile.  At 3:30 my dietician walks in and I get another hug.  We discuss my labs, which she says look wonderful, and my diet then she answers some questions I have.  After our appointment ends she takes us to see my personal scheduler, Alethia.  She is a cut up and we all giggle as she adds future appointments to my schedule, per my doctor’s orders.  From her office, we head for my 4:30 appointment in Infusion and wait in the lobby for me to get my hormone therapy.  One woman is lying on a couch covered up and sleeping while another woman is talking on her phone and crying.  I’m reminded of where I was health wise not that many months ago and how fortunate I am to be where I am now.  Eventually my nurse asks if I’m ready.  I endure the injection that seems to go on and on.  Finally I get a Band-Aid and I’m done.  It’s a little after 5:00 now.  We go down to the first floor straight to the café.  We look around to see what we should eat and I spot Yolanda again.  I ask if she’s feeling any better than she was at lunch.  No.  But she is still sporting a smile and positive attitude.  She’s getting some food to take up to her room again so she can rest.  As I’m standing next to her a CTCA employee walks up behind Yolanda and puts a fuzzy, colorful blanket over her shoulders.  Yolanda’s smile grows brighter as the woman tells her she made it especially for her.  Another example of true “health-care”.  As we sit at our table eating, Mark, the music therapist, stops by to remind us of Drum Circle at 6:30.

I tell him we plan to be there then he introduces us to his friend (a patient) who is personally associated with the Trans-Siberian Orchestra.  Mark and his friend tell us about their concert they recently attended and show us some video of the concert.  We finish eating and make a quick stop at our room before heading off to Drum Circle.  There are about 15 people in attendance tonight.  We all grab instruments to play.

No experience required.  We have a special guest, Dean, who’s just a little guy with lots of energy.  He makes us all laugh.

My mom decided to color while the rest of us made loud racket, but we all laughed and enjoyed ourselves.

Some shared a little about their experience at CTCA while I wiped away tears at hearing their stories.  One woman I met and talked with afterward lives in Sanford, a city near my hometown.  She said she’s scheduled for brain surgery Monday (today).  Again, I reflected on my own situation, grateful I haven’t had to endure such a thing.  After a long day of appointments, we call it a day and go to our room for the night.  The next morning, as we prepared to leave for home, We bump into Yolanda again.  She is passing out little gifts to CTCA employees and other people she knows.  I said to her that she looked like she was finally feeling better.  She said she was still struggling.  We encouraged her and gave her a hug as we left. 

As we traveled back home to Florida, I thought of our visit.  We enjoyed meeting many new people and we were encouraged by many others.  So many little joys had added up to make a delightful trip despite where we were and why we were there.  I thought of Yolanda.  Even though she had not been feeling well, she refused to let it overcome her.  She persisted in spreading love and joy.  All these things reminded me of a card I keep that my grandparents sent me many months ago.  This is what it says:

Having a beautiful life isn’t so much about getting that one big thing

or reaching that one great goal.

Having a beautiful life is more about

seeing the wonder in the little things,

the everyday things that life washes onto your shore.

Gathering them like pearls,

stringing them together,

And realizing what a treasure you’ve collected.

Do that, and you cannot help but have a beautiful life…

The one you are meant to live.

Schedule Change!

As I write this, I’m traveling home from my most recent 4 day/3 night retreat at the Cancer Fighter Resort (AKA Cancer Treatment Center of America – Newnan, GA).  I’m relaxed, refreshed and full of joy!  Sometimes, my neatly organized schedule gets abruptly rearranged during my visit and it happened this time too.

    CTCA front entrance

During my previous trip, my pulmonary doctor was pleased to hear that my breathing was getting easier.  I told him I didn’t feel like fluid surrounding my left lung (if there was any remaining) was hindering my breathing any more.  He told me he would remove my Pleurx Catheter if I could go until my next visit without having to drain.  He scheduled me for surgery in anticipation that that would be the case.  When he saw me in his office this time, he did an ultrasound and saw only a small amount of fluid.  Then, he gave me two options.  The first was to follow through with surgery the next morning, as scheduled or he could pull the catheter right there in his office with no numbing meds so I could have the entire next day free of appointments (the whole day had been set aside for surgery and recovery).  I hesitantly agreed to have him pull it right then.  It was quick and the pain was tolerable.  No tears.  No surgery.  Free day tomorrow!!  I was ecstatic at this schedule change!  The Pleurx had been the last of my cancer “accessories”. 

Fluid I drained several months ago using my Pleurx. Ewww, it's foamy!

The following day, I went to a craft class, and then a worship service at the chapel on site, had a music therapy session, attended a cooking demonstration and played Bingo after dinner.  I met several new people and enjoyed talking with them and hearing their stories.  The next day was the rest of my appointments.  All my doctors were pleased with my continued progress and my blood work looked fantastic, they said.

BINGO!

Chapel

My music therapist and I stole their guns and made them be in picture with us!

Later that evening I attended Drum Circle.  Drum Circle has many purposes.  It helps patients and caregivers to relax, connect with others, release stress, etc.  We beat on drums, shake tambourines and sing among other things.  This time was extra special though.  After many people left, a few of us lagged behind and chatted.  One woman asked if we would be her “live” audience as she tried to recite from memory, a poem she’d written.  She had been practicing alone, trying to memorize it because at the beginning of the year she is supposed to share it with her church family.  I had not met this woman before drum circle.  But I could tell we had some things in common.  She looked like me – short hair (beginning to grow back), petite, smiling.  She said she was nervous, as she rose and stood before us.  As she spoke, her voice echoed some of my deepest feelings.  Her poem, “Woman under Construction”, painted the picture of her trials through cancer and God’s refining love transforming her in the process.  The longer she spoke, the more I could not control the tears streaming down my cheeks.  I’ve found it difficult to accurately describe some of my physical conditions and emotions during my own fight to non-cancer patients.  But this woman knew exactly.  Her poem, a monologue of her conversation with God lasted five minutes.  She had it memorized but spoke straight from her heart.  We all congratulated and encouraged her.  As I spoke to her personally afterwards, I found we had much more in common – our faith, our love for exercise and health, we are close in age, both have children and we both finished chemo around the same time.  She is currently having daily radiation treatments.  She has been at CTCA since October (I think) and won’t finish until mid-December.  Please keep Esther in your prayers when you remember me.  She blessed me greatly!! 

God has placed me in a great family at CTCA in GA.  I’m always excited about going!  Isn’t that strange?!  Employees and patients, both are warm and caring.  From the valet, to the housekeepers, to cooks, doctors, to security – they all ask what they can do to help, if we need anything and how we are.  I guess I could keep to myself while I’m there, but I’d be missing out on so much.

My housekeeping friend.  She has remembered my name since April! She always greets us with a huge smile and a "How you doin'?" and leaves us with a hug.

I asked my husband to take my picture with this sign.  CTCA is definitely a refuge area for paitents and caregivers too!

Wall sign leading to two places I go to every visit...Infusion (previously for chemo and now hormone therapy) and Wound Care to follow up with my wound care peeps, Beth and Stephanie.

Thank you for your prayers.  Thank you for your smiles.  Thank you for your hugs.  Thank you for your support.  Thank you for your encouragement.  I thank God that you love me so well.  I love you back!

Still fighting.  Still VICTORIOUS!

-Darlene

Inspired to love...

I haven’t blogged in months.  I’m sorry.  I started one a while back but now it’s obsolete.  I’m not even sure where to start now.

I’m improved so much since one year ago.  Here’s a short list of some side symptoms I’ve had to deal with over the past year:

Weight – 84lbs (I tried not to have many pictures taken then.  I don’t want to be reminded how awful that looked)

On oxygen 24/7

Pleural fluid around lungs prevented them from expanding much.  Breathing and talking were such an effort.  They would tire me out.  (Thanks to those who were my temporary voice!)

Pain.  Sometimes excruciating.  In bones, tissues, etc.  Pain meds were trial and error.  Some wouldn’t touch the pain and some made me have nightmarish dreams or see a naked family of four under my hospital bed (no joke).  I was afraid to sleep some nights so I would try to stay awake.  I hated how pain meds made me feel.  Isolated, oppressed, depressed, and nauseous.  I felt trapped inside myself.  I wasn’t me.

My physical body was so weak that I was in a wheelchair for a short while when I got out of the hospital in April. 

I needed help with self-care activities. 

I was unable to lay down for eight months or so due to the fluid around my lungs.  When I tried, I either couldn’t breathe or would cough constantly from my lungs trying to expand.

My heart rate was increased.  A side effect of the pleural fluid.  A normal heart rate is around 60-100 beats per minute.  Mine was over 100 and once it got up to 150 while I was sitting still.  That’s not a good feeling.  Currently, I’m happy if I see my heart rate under 95.  That’s still a work in progress.

 

There were a few months that anxiety had a grip on me.  I’ve never dealt with that before.  It was horrible!  I couldn’t go into a bathroom without panicking.  My heart would race and I’d start sweating.  I’d call out for someone to come help me by bringing me ice or something to fan me and I’d just want someone there with me.  Normally, I like to be outside doing things, but I couldn’t bring myself to go outside.  It was a scary thought.  I eventually ventured out onto the porch, then the yard.  It was all I could do to sit at the table for a meal.  (Sorry for being so weird about it when I was at your house, Pam.)  I felt like everything was too close to me.  I would push my plate and other stuff on the table away from me or I’d keep moving stuff around.  When I started going out in public I had to work myself up to it.  At first, I’d only go to church.  I’d have to allow myself lots of extra time to get ready.  That way I wouldn’t have to rush and get more anxious.  I had to plan out what I would wear and take with me and when I needed to leave so I wouldn’t have to think about it that day.  I had to see it on paper to prepare myself mentally.  Then I’d have to take an anxiety medication to deal with it all.  A person coming up to hug me or encourage me was very overwhelming…and these are people I consider close like family, not strangers.  

I’m so thankful that’s in the past and that the people around me loved me enough to help me through the fear, isolation, weirdness, bossiness, attitude and ugliness of it all.  I was not myself.  I knew it but I wasn’t able to get past it until I decided I no longer wanted to be a slave to it.  (Cue the song “No Longer Slaves”!)   https://youtu.be/f8TkUMJtK5k

Thankfully, the picture is quite different now.  My recent tests show “dramatic improvement”.  My oncologist’s words.  My lung has expanded greatly.  Breathing is much easier.  I still get out of breath at times but it continues to improve.  I’m still draining fluid periodically from around my lung (I have a Pleurx catheter surgically inserted between my lung and pleura).  The amount of fluid is lessening as my lung continues to expand.  Originally, the doctor’s weren’t sure if my lung would re-inflate much after bearing the weight of the fluid.  All my doctors are pleased with my weight gain.  I’m close to what I was before my diagnosis.  My PEC team (oncologist, naturopath and nutritionist) still guides me at each follow up visit.  My immune system and overall health is bolstered with high quality supplements like COQ10, fish oil, curcumin, turkey tail (mushroom), etc.  There is still a healing wound on the right side of my chest.  I still see my wound care nurse at each visit too.  I finished chemotherapy finally so the picc line in my left arm has been removed.  What a relief!  It had to be kept super clean and flushed each day with saline.  Neuropathy I had been having in my fingers is gone.  I no longer need home health, which I’m glad for but I miss seeing my nurse, Florence.  A few weeks ago my oncologist ordered new, current biopsies for genomic testing.  This reveals DNA and other information to help the doctor treat the patient more efficiently.  After chemo I began a hormone therapy to suppress estrogen and my doctor wanted to confirm we were using the best treatment.  I’m also getting my hair back! Yay!  I return to CTCA (Cancer Treatment Center of America) frequently for testing and follow ups with my doctors. It’s such a great place to be when having to deal with the stresses of cancer.

Thanks again for your support, prayers, encouragement and mostly for your love.  You inspire me to try to love as much as I am loved!  I feel like the richest person.  All the money in the world can’t buy this.  To those from CTCA reading this:  I cannot fully express my gratefulness to you for helping me, encouraging me, hugging me, asking if I’m okay, smiling at me, praying with me, recognizing me (after I lost my hair),bringing my lunch up to Infusion while I was having chemo,  joking with me, cleaning my salad off the floor, getting me mac and cheese that was only for inpatients when my tooth was hurting too much to eat hard foods, coming to play guitar in my hospital room to relax me, introducing me to your children, telling me about your family, being a listening ear and treating me like your own family (Dr. McKnight, Dr. Spevack, Ms. Erin, Lakeitha, Dee, Alethia, Dr. Bechara, Dr. Parks, Kim, Carol, Lorrie, Ms. Claire, Jeannie, Alexis, Beverly, Kathy, everyone in the kitchen, Dr. Bernstein, Dr. Steingraber, Dr. Kelley, Dr. Schofield, Joey, Commie, Lyn, the bingo ladies, Ms. Beth and Ms. Stephanie, Alanna, Ms. Ashley, Tondra, Mr. Chip, Mark, my respiratory therapist, the woman in EVS who made us a home cooked meal, LizAnn..).

There is a tradition at CTCA when a patient finishes chemo or radiation.  It’s called the ringing of the bell.  After four and a half months of aggressive chemo infusions, I walked out of the Infusion clinic and rang the bell that hangs on the wall loud and proud!  All the staff, my husband and my son clapped and cheered with me.  They gave me a t-shirt.  They took my picture.  I couldn’t see too well for the tears in my eyes but I was smiling big.  I will leave you with the story of “Two Horses” that hangs on the wall with the bell. 

“There were two horses in a field.  From a distance, each horse looks like any other horse.  But if you get a closer look you will notice something quite interesting… One of the horses is blind.  His owner has chosen not to have him put down, but has made him a safe and comfortable barn to live in. This alone is pretty amazing.  But if you stand nearby and listen, you will hear the sound of a bell. It is coming from a smaller horse in the field.  Attached to the horse’s halter is a small, copper-colored bell. It lets the blind friend know where the other horse is, so he can follow.  As you stand and watch these two friends you’ll see that the horse with the bell is always checking on the blind horse, and that the blind horse will listen for the bell and then slowly walk to where the other horse is, trusting he will not be led astray.  When the horse with the bell returns to the shelter of the barn each evening, he will stop occasionally to look back, making sure that the blind friend isn’t too far behind to hear the bell.

Like the owners of these two horses, God does not throw us away just because we are not perfect. Or because we have problems or challenges.  He watches over us and even brings others into our lives to help us when we are in need.  Sometimes we are the blind horse, being guided by the little ringing bell of those who God places in our lives.

And at other times we are the guide horse, helping others to find their way.  Good friends are like that. You may not always see them, but you know they are always there.

Please listen for my bell, and I will listen for yours”.

The bell

My cousin Debra, visiting me during a chemo infusion

The main hall at CTCA called the Gallery

My chemo infusion suite!

Infusion lobby

Driving up to CTCA's front entrance

Main entrance at CTCA (entrance to kitchen-left, entrance to dining room-right)

Guest Services desk (left)

Nurse friends from Pulmomology

My care manager (left) and my oncologist (right)

My nutritionist

My personal scheduler for all appointments! She is a bright ray of sunshine!

My tech (left) and nurse (right) for chemo infusion. You may notice Joey, the tech, from the CTCA commercials.

Kathy delivers meals to the patients if they aren't able to get to the cafeteria due to their infusions.  My infusions lasted approximately six hours!

My tall friend, Jeannie.  She treats me like a queen.  I always look for her smiling face when I'm at CTCA.

My son, drove three and a half hours to visit me at CTCA in August.

HAIR!!

Exciting Improvements!

So much has been happening since my last blog a month ago.  I’ve had many improvements in my health.

·         I’ve been gaining weight.  I’m triple digits now, baby!!

·          I’ve been able to cut down on using supplemental oxygen.

·          I’ve been going out more.  Mostly for errands, but I did go to dinner when some friends invited us over. 

·         The tumor markers have continued to drop.  Two tumor maker tests are done with each lab draw and the markers indicate the spreading of disease if they increase or the decline of disease if they decrease.

·          After about a five week period of having no fluid around my lungs some fluid has been accumulating again.  I’m glad my pulmonary doctor advised against removing the pleural catheter back then.  I’ve been draining 200-500 mls (approx. 6-17 ounces) of fluid about every five days recently.  Back in October 2014 when we first discovered the fluid on an x-ray I went to the hospital and had two liters drained off.  Imaging the trouble I had breathing then by thinking of a two liter bottle of soda lying on your lung as you try to breathe!  I’m thankful I’m able to drain the fluid now if any accumulates. 

·         Lastly, my recovery time after chemotherapy has been decreasing.  At first it took about eight days for me to recover, but now it’s down to three or four days.  Side effects I’ve experienced other than losing my hair are muscle/bone soreness, flushing, numbness in my fingertips, mild loss of taste, hot/cold flashes and emotion overload (this one is always fun for my husband!).  I did have nausea the first time and one instance of diarrhea also.

Some of the improvements I mentioned may not seem like much, but now I recognize how much I took for granted when I was healthy.

We’ve added hyperthermia to my treatments each time.  Hyperthermia is a form of radiation but can be done two ways.  One uses micro-waves and the other uses hot water.  I have the latter.  I lay on a table and six temperature sensors are taped to my torso and chest.  Then a large 18”x18” plastic bag filled with water (similar to a hot water bottle) is placed on top of the sensors.  Tubes are attached to the bag and are connected to a machine that heats the water and regulates the temperature to 109 degrees.  Once the sensors read a temperature of 109 degrees the clock begins.  The table is inverted (to help situate the water correctly over each sensor) and I stay that way for one hour.  I can pick a movie to watch or I can sleep or choose some soothing music to listen to.  Except for being inverted (it’s not much), it’s mostly a calm, soothing treatment that’s warm and relaxing.  What if you have to pee, you ask?  That was my question too.  I’m supposed to drink at least a couple quarts of water each day!  I was about 40 minutes in when I asked that question.  We had to take off the water, unhook the sensors, level the table, get a gown on and walk down the hall to the bathroom.  Then redo everything to hook me back up and wait for the sensors to reach 109 degrees again then start the clock for the remaining time.  The procedure isn’t supposed to be broken up like that so the nurse said I’d have to use a bed pan next time!!  In the future, I’ll cut my water intake that day!  Hyperthermia is done within 24 hours but preferably right before or right after chemotherapy.  It heats up the cancer cells making them more vulnerable to the chemo toxins.

I leave soon for my fifth treatment at CTCA.  My doctor has several tests and scans scheduled prior to my scheduled chemo, which he’s actually called ‘tentative’ depending on my results.  We will discuss future treatment options this visit.

 

Last visit I finally did something I had been longing to do on the previous trips…BINGO!!  Yeah!  There are always activities going on at CTCA that anyone can participate in.  I’ve seen Bingo going on several times (in the dining room) when I’ve been eating and I’ve wanted to play but I’ve been too tired.  I finally decided to jump in and have some fun!  I ended up winning twice.  I got to pick my prizes.  There were some really nice prizes.  My husband didn’t stay to play.  He went back up to our room instead.  After I had been gone for a while he came back down to bring me my room key so I wouldn’t have to wake him up if I came in late.  But when he got to my table I was nearly falling asleep over my bingo card!  He kept pointing out calls that I had on my card but wasn’t seeing because I was deliriously tired! Haha!  It was 8:30pm.  Earlier that day, I had chemo and included in the ‘pre-meds’ that I was given was Benadryl.  I’m a lightweight when it comes to medication so it was all I could do to stay awake.  I had so much fun playing and met two couples also.  It’s easy to meet people at CTCA.  Most people are very friendly.  We met another man on the elevator who shared his amazing story with us.  We ended up praying with him and rejoicing with him over his healing progress.  CTCA has such a positive and supportive atmosphere.  I get excited to go before each trip!

We’ve received many gifts from you.  Financial gifts and other gifts too…protein powder, clothes, books, hats, scarves, visits, meals, etc.  Thank you! Thank you! Thank you!  You’ve blessed us so much.  Last trip there were a few people who gave us some money or made a donation using Go Fund Me right before we left.  It turned out to be the exact amount we needed to pay for lodging, gas, supplements and meals!  God is so amazing to supply for what we need! 

In closing, I thank you for taking time to read about my progress.  I appreciate the messages I get with questions or congratulations.  You really make me feel special to have so many that care about me.  I’ve included a few pictures for you.  I wish you could all come with me to CTCA and experience these wonderful things I’m writing about.  The next best thing is sharing pictures instead.  Shown below are the cafeteria and the reception desk at the Infusion Clinic where I go for chemo and vitamin infusions.  Lastly, is a picture from a friend that brought a huge smile to my face.  I don’t support Relay for Life for personal reasons, but my friend participates each year celebrating her mom’s VICTORY over cancer.  Below is a picture of my friend’s contribution to the relay in my name.  I love what it says.  If you talk about me, use words like ‘winning’, ‘healing’, ‘fighting’ and ‘overcoming’.  The Bible says the tongue has the power of life and death, so use your tongue to speak ‘LIFE’ for me!! 

Upon returning from this upcoming visit to the cancer center, I’ll try to update you sooner rather than later.

Love, Darlene

http://www.gofundme.com/g8xfno

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 http://www.neulasta.com/what-is-neulasta.html .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

http://www.gofundme.com/g8xfno

Gotta get busy

  I’d like to illustrate a picture for you using two true stories.  One is about my neighbor who is a wise man around 80.  Daily he travels the fields & pastures behind his home with his dog & shotgun.  No, he isn't hunting, he’s just keeping any eye on everything.  But he is prepared and armed to take action if needed.  The second story is of an elderly man my husband did some work for recently.  The man came in a little after dark one day from working in his fields.  Inside his house he was surprised to find a vagrant man along with the man’s bicycle and bag!  The vagrant informed him that he was going to sleep there for the night.  Our elderly friend quickly went to retrieve his shotgun and replied “This says you’re not!”  The vagrant ran out of the house, leaving his bicycle and bag. 

  

  So, my neighbor stays on guard, looking to eradicate trouble when it pops up.  But our elderly friend doesn't seem to be as alert.  Hopefully he’ll be locking his doors more. 

  

  Lately, I've felt more like our friend & less like our neighbor.  I've been letting negative thoughts in my mind, then considering them instead of immediately eradicating them.  I failed to see the damage being done.  Eventually, I succumbed to a state of despair and hopelessness.  These attacks on my mind were constant.  I found some Bible verses regarding health, life, etc. and wrote them down.  I began speaking each verse out loud to my soul and contrasting each attack on my mind with a truth from God’s Word.  I also had some more physical changes to make—like getting dressed each day, instead of wearing pajamas all day.  In the movie Shawshank Redemption, Morgan Freeman’s character refers to our choice to “get busy livin’ or get busy dyin’”.  I’m ashamed to say I had not been busy livin’.  It’s not easy to make a transition.  I’m so grateful for the support and encouragement I've been given.  Once I recognized and admitted my problem, help started to pour in.  Last week another encouragement came.  I found out I've been accepted for testing and evaluation at the Cancer Treatment Center of America, near Atlanta.  During next week we should have more information on recommended treatments.  I like the picture my friend had in her mind of me showing up at the Cancer Treatment Center:

Her picture was me, walking through their doors with about 300 of my family and friends behind me—all of us saying “We’re here!” 

  I will try to stay in touch to keep you all updated.  If you have our number and want an update, please call.  My husband doesn't text.  I expect a visit from everyone. J  I’m filled with love for you all.  Your support and help mean so much. 

Thank you-- Darlene

http://www.cancercenter.com/southeastern/

http://www.gofundme.com/g8xfno

Ketchup

Ketchup.

That’s what I’m going to try to do—catch you up on what’s been happening. 

Back in November, my doctor sent me for a chest x-ray because I was coughing, short of breath and unable to lay down (without losing my breath).  The x-ray showed a pleural effusion in both pleural cavities.  This meant fluid was building around my lungs (NOT in my lungs), putting pressure on them; making the lungs unable to expand fully.  The doctor sent me to the hospital for a Thoracentesis, a procedure where a needle and catheter are inserted through the ribs to the pleural cavity for the purpose of draining excess fluid.   The procedure itself wasn’t too bad until the end, when two liters of fluid had been drained out and my lung was trying to re-expand after having been collapsed under the weight of the fluid.  I coughed, struggling for breath for at least 15 minutes.   I was given another x-ray.  After waiting for the results, I was told I had a pneumothorax—a perforation of the lung.  The doctor told me the perforation most likely happened during the Thoracentesis.  He recommended I stay overnight in case of any complications and have another x-ray in the morning.  I agreed.  At 8:00 AM, I went for another x-ray.  Several hours later a physician’s assistant came to my room to say she had reviewed the x-ray—on her phone—and it looked fine.  She said I “was released to go home”.  I’m not sure how she could make out anything clearly on a cell phone, but I told her I wanted to see a doctor and get their opinion.  A couple of hours later, around 2:30, a doctor came in and said she thought I should stay.  She showed us the 8:00 AM x-ray and said the pneumothorax had not improved and fluid had filled the pleural cavity again.  

Many things with this hospital experience had been upsetting.  I chose to go home and consult my doctor.  After consultations and some research, I decided to go to a different hospital.  My doctor was now recommending a surgical procedure to relieve the excess fluid called a Pluerodesis.  A pleural effusion can occur in cases of heart disease or cancer.  If excess fluid was going to keep occurring, we were going to have to take additional steps to deal with it. 

I went to the other hospital to have the Pluerodesis procedure.  I sat in a hospital bed and walked the halls for exercise for a week while they ran test, brought various doctors in for consult and obtained medical records.  Finally, I went in for surgery the day before Thanksgiving.  I recovered in ICU for three days before they transferred me to the Step Down Unit.  There I had begun breathing treatments to help my lung expand again.  Due to the invasiveness of the procedure, doctors typically only do one side at a time.  My right side had the most fluid, according to x-rays.  Four days after surgery, the surgeon removed the chest tube.  A large tube had been stitched into my side to allow the fluid to drain. 

A day and a half later they sent me home.  Six weeks later, I’m still recovering.  My lung capacity is slowly increasing after being under so much pressure from the fluid.  This makes talking an effort.  I try to keep my breathing slow and regulated so my lungs aren’t stressed.  I start coughing when my lungs are working harder; trying to keep up with heavier breathing.  Also, the cold weather and wind makes me cough.  My right side is still sore where the chest drain tube was.  The surgeon said many nerves had been cut for the procedure and I’d most likely have some degree of pain long term. 

We’ve been busy since I came home from the hospital trying to get to a cancer treatment center in Atlanta.  You’d think it would be a fairly simple process, but we’ve had to take step, after step, even to get where we are now.  Currently we are going back & forth about insurance.  Please keep us in your prayers as we go through this process. 

I want to thank all of the people who have blessed me during these things.  Without naming names, I’m so grateful to each person who supported my GoFundMe account (setting it up, sharing it, contributing).  When I was in the hospital, my Husband was able to be there with me instead of having to work and we were still able to pay our bills from the funds coming in.  If you contributed money in any way, we are so grateful.  Thanks to those who check up on us, send sweet cards, steadfastly pray, run errands, encourage us, visit us, make food for me, make liposomal vitamin c,  sit with me, and bring me fresh squeezed orange juice and clothes that fit better.  I could just keep going.  The list is so long.  I’ve also enjoyed visits from family from Northern Alabama down to central Florida and many messages and texts from friends all over.   The kindness and love poured out on me is overwhelming.  My words are fewer these days, but please know I love you right back! 

--Darlene