Sunday, October 11, 2015

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”!)

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.



  1. This post is so awesome! You have been through so much. I didn't know half of it until I read this. It sounds like your care is simply fantastic! You look beautiful! I am so glad you are doing so much better. Thanks for sharing the good and the bad. You never know who you are going to help.

  2. Thank you for the updates, I love reading them. Very inspiring to me. You looked great the other day when you came with your mom to pick up Foxy and Tuffy. :)

  3. I am always so amazed as I read your blogs. It is wonderful that God is taking such good care of you through the healing hands He provides! It hurts my heart to read what you have been through and then you put your encouraging words in and it lifts me back up! Much love and prayers to you, sweet girl!

  4. Darlene, your journey is incredible. You have been consistently in our prayers throughout your treatment. I have also been encouraged by your support of April during her fight and she was too. I'm sure she is cheering for you from heaven. I look forward to witnessing how God will use you to minister to others in the future.
    "I thank my God always concerning you for the grace of God which was given to you by Christ Jesus." I Cor 1:4

  5. So glad to see your spirit return! You were fading and we were so worried but now your blossoming and it shows! We give God the glory, our prayers were answered. Thank God for the CTCA staff, they sound amazing! Love you!

  6. So glad to see your spirit return! You were fading and we were so worried but now your blossoming and it shows! We give God the glory, our prayers were answered. Thank God for the CTCA staff, they sound amazing! Love you!

  7. Hallelujah!!! Tested by fire and still a strong witness !!