I have been mute for about 4 weeks and I apologize. I am not sure why I have been so quiet, but it has been a very busy month and life got ahead of me. We have made lots of memories. Maddie graduated from Kindergarten, Jamon (the big kid) returned home from college for the summer, I was able to go on a Girl Scouts field trip, and we spent lots of time just spending time.
I am back in the chemo chair, today is day 3, and my final day of round #5 of this “stint of chemo” aka round 19 overall. I am doing well tolerating the chemo and just a little beat down and fatigued.
It’s amazing how I forget what chemo is like in just the few weeks between each round. I forget the soapy taste I get in my mouth, the rosy cheeks from the steroids and Etoposide (chemo drug), the foggy brain, slightly blurry vision, lack of concentration, yucky tummy, and lots more. A friend once told me that she was told by a friend going through chemo that it was like all your thoughts were on sticky notes and these notes were scrambled all over the wall. This is so true.
It is all tolerable but annoying and it gets old. But, all we can do is giggle through it. If not, we would be angry and when I am angry, I shut down even more.
So, let’s talk about food. After chemo, everything tastes funny. Well, I should say after all the chemo I have had my taste buds seem permanently effected. However, the days after chemo are the hardest. For me, I have to eat. If I don’t I feel worse because the food seems to help me tolerate the chemo drugs better. Heavier basic foods like baked potatoes, plain pasta, cream soup, noodle soups, bagels and fresh fruit and veggies like tomatoes and avocados are usually what works the best. I do like it to have flavor though that can mask the soapy metallic blah flavor the chemo leaves in my mouth. I cannot tolerate fried foods, fishy foods, or heavily cooked foods. Even wild never frozen salmon that I like is super fishy in this time frame and super yucky.
Ironically, every time it is a little different though. Last night, we went to dinner at a Mexican restaurant here in Tampa. Those who know me know I enjoy a good Margarita. I took a sip of my friend’s beautiful purple Margarita (no clue what kind it was) and wanted to gag. Then after seeing an amazing looking big glass of chocolate pudding with homemade whipped cream being served to another table, I had to have one for dessert. I thought it was the best thing I had eaten all day. Creamy, chocolaty… YUM!!! I noticed my tablemates were not as eager to eat it as I was and we didn’t finish it. As we walked to the car, I looked at Wallace and said “wasn’t that pudding amazing”. He proceeded to tell me it was pretty yucky. It was gritty and had too much cinnamon and nutmeg in it. Mind you I didn’t taste that. All I got was a smooth sweetness that masked the soapy yucky taste in my mouth.
Today, trying to stay hydrated is a challenge because the water tastes like the plastic bottle, but I am trying. I am pledging to my friend Stephanie that I will start juicing again this week. I need the nutrients and immune support. No more catching my kiddos crud.
More posts to come, no more being mute. Day 3 of chemo is over. The adventure continues with a PET scan at the end of the month and more chemo the first week in July. Thank you for all your prayers, positivity, support, and encouragement. I will be mute no more. #webelieveinmiracles #fightingthebigbug
Therapy- “treatment intended to relieve and or heal a disorder” Humor- “the quality of being amusing or comic, mood, disposition, frame of mind” (Definitions sited from Google Dictionary)
On chemo days (and all doctor or what we call Moffitt days) we practice what my husband calls Humortherapy. It is our treatment, disposition, and frame of mind to relieve, handle, get through, tolerate, digest, and survive this life sentence that we call an adventure. Without jokes, laughs, giggles, and a positive outlook we would be sleeping all day, hiding under our desks or in the closet, and not living our lives. When we giggle, smile or laugh, those sitting next to us might think we are inappropriate, disrespectful, or that we don’t have as bad a situation as others. Please know no one has ever questioned our laughter, giggles or positivity- we normally make a lot of friends. I like to think our light hearted attitude gets us through the days without panicking about long wait times, schedules being thrown off, messed up doctors orders, risks of treatment, or this whole depressing situation. We take it as it comes and we giggle through it. I truly believe humortherapy keeps us going. I believe in GIGGLING!
I guess I should start by prefacing that I am writing this while sitting out side, staring at the Tampa skyline or some part of it. Tampa is a huge sprawling city. We have learned that if it is possible, staying in Tampa for the nights we have 3 straight days of chemo is therapeutic and necessary. Though we only live 90 minutes a way, driving at 80mph without traffic, it is a highly stressful interstate drive that adds a minimum of 3 hours to every day- normally more like 4-5 hours. This is exhausting when you go home to mommying and daddying (and feel yucky). Although Wallace isn’t getting the treatment- these days are just as exhausting physically and emotionally for him. We miss our kiddos, but we are much better parents when we come home rested on the final day. These hotel stays also allow me to rest, recharge,and spend some quality time with my husband.
Many have asked me what chemo days are like. I can tell you what mine look like, but please know this is just my experience and is probably nothing like my other cancer friends experiences.
6AM: We leave the house and head to Moffitt Cancer Center in Tampa. This isn’t a fasting day so we rush through the Dunkin drive through. (I am being inspired and guided by an old dear friend’s confidence in me to give up the bad stuff. So starting Sunday- only black coffee and no donuts. Ironically, I am super excited about the changes.)
7:30AM: Arrive at Moffitt. One of my favorite features of Moffitt is their valet system. You just drive up, hand the really nice valets your keys, and head in the building. We speed walk to the lab where I have my port accessed and labs drawn. Many probably don’t know what a port is and I didn’t know what it was or really didn’t want one, but it is my best friend now. It is implanted above my right chest (yes- you can see the outline of it and it isn’t pretty).It has a piece of vinyl tubing (just like the stuff I sold most of my life in the hardware store) that leads up to a vein in my neck and goes directly to the heart. My port aka best friend allows me to get all labs drawn, infusions, medications, fluids, contrast for scans, and probably more without having to find a vein and have an IV inserted. I can’t imagine doing this adventure without it- someday I will have to count how many times it has been used… chemo alone is 51, then any other lab draws, CAT scans, PET scans, MRI’s, hospital stays… For those who are nerdy like me and want to know more about ports, this article from Memorial Sloan Kettering Cancer Center has a great explanation: https://www.mskcc.org/cancer-care/patient-education/your-implanted-port
8AM: We head to the 3rd floor to check in with a doctor who is monitoring my bones to see how the bone metastases (mets) is effecting my bones structurally. He specifically looks at my shoulders, arms, hands, hips, pelvis, legs, and feet. I have had cancer that we know of in my hips, pelvic area, part of left upper leg, right shoulder. Some of this we eradicated (boy I love that word), some we knocked down and it grew back, some is new. For me, the bone mets is secondary to my pancreas and liver areas this means that most treatment will be for palliative (reducing pain) and or if I am at risk for breaking anything. We had a very positive visit. Bones look strong!
8:45 AM: We head to fifth floor to GI clinic for required check up before chemo is approved. Closer to 10AM, we are called in to see my doctor’s PA. She asks how I am feeling, we discuss any concerns, and go over lab results. All looks good, so she sends us on our way to chemo.
10:15 AM: We head to fourth floor to the Infusion center and check in. I leave Wallace with my beeper and head to first floor gift shop to get him a Snickers and me a juice. (Juice isn’t a norm for me, but I was feeling a little off balance) After a long morning, Snickers brighten him up! They are peanutopolis! \pE-nut-ä-pu-lis\ (noun). A state of mind making you feel very strong and powerful, almost mayor-like. (Urban Dictionary)
11:15 AM: We are called back to be seated. The infusion staff at Moffitt Magnolia is wonderful. They make you comfortable, feel valued, and are funny, kind, and compassionate. We have our own curtained off cubicle- it is good size, I have a recliner and Wallace has a seat with a gravity type of back that he likes.
11:30 AM: The nurse comes in and checks over at home medications, how I am feeling, any concerns, etc. Then he starts my line into my port. Premeds come first: Dexamethasone, Aloxi (nausea), Emend (nausea), Pepcid, and Benadryl. The Premed’s take about an hour.
12:30PM: The nurse comes back in and puts on what I call a hazmat suit. A blue thicker gown with cuffs that covers the body neck down and ties in the back. Chemo drugs are toxic/poisonous among other things- yet with giggles I write this: they are being injected into my body via my heart. The nurse then hangs the chemo and after I check it, and another nurse double checks it and the settings in the computer and machine, I am connected and infusion begins. My first chemo is Carboplatin and this runs for 2 hours and my second chemo is Etoposide which runs for an hour. I was exhausted and full of Benadryl so I slept for an hour. My favorite part of Moffitt days is seeing my dear “nurse friend”. She knows who she is and she always boosts my spirits, validates my concerns, points me in the right direction, and brightens my day. Although I haven’t know you long “nurse friend”, I am so lucky to have you in my life and feel like I have known you forever.
3:45PM: The nurse disconnects me and removes the access to my port. I prefer being re-stuck every day. This allows me to shower easily, sleep comfortably, and also give both sides of my port activity.
4:00PM: We are at the valet getting the car and quickly driving to hotel.
4:45PM: Although only 15-20 miles, it takes about 45 minutes. I like to choose waterfront hotels because the ocean/bay rejuvenates me. I am an island girl at heart. When you are at Moffitt or any cancer center, I have found it feels like time disappears and although you are positive, it wears you down. I have been using Priceline to get low rates.
5:30PM: An early dinner by the water. (In the hot hot sun, Wallace humored me.)
My hubby in the hot hot sun…. Recharging
7PM: In my PJ’s watching reality TV. (Yes, he humored me again- he dislikes reality TV. (Can’t say hate because that word is a “bad word” in a house with little kids) Day 2 of chemo starts at 12:30 on Friday. Hope to post more after…
