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.
|My cousin Debra, visiting me during a chemo infusion|
|The main hall at CTCA called the Gallery|
|My chemo infusion suite!|
|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 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.|