I am out the other side of Chemo #5, and want to record the details. My hope is this will help someone else who is going through Chemo.
This blog was started for several reasons: a safe place for words to flow as a catharsis for me, a record of this time of cancer treatment for me to see my growth and lessons learned, an aid to anyone going through healing, and a way to reflect Glory to God of His work in my life right now.
I want you all to realize, I am no better or worse than anyone of you at walking through illness. Sometimes I listen to the still small voice speaking to my soul, and sometimes I ignore it. Each of us has the spirit to heal, and each of us has the presence of God available every second.
I, like each of you, are given the gift of life for today. I want my life today to be like clay in the potter's hand, reworked to reflect the creator's glory. It is God who has all the answers, has all the power, and knows what to do. I am just like you, trying. I fall, I get up. I fall, I get up. I look to Him. I need Him.
Each of you have had and will have amazing events in your life, some visible to all and some only known by you (and God). Sometimes you will see your impact on others' lives right away, sometimes you will never know how others are affected by your words or actions. Sometimes the whole event is about you, and sometimes it is totally about someone else. Isn't that cool?
It is God's power that heals, it is God's love that is shown through all of you.
I am just trying to cooperate.
So, what follows are the humdrum details of this week. Please don't feel you need to read them if they hold no interest.
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Day 0 of Chemo, Monday Sept 20
The Getting Ready Day
Concept - Today is prepping for tomorrow. Keeping peaceful and positive while organizing for another attack on any cancer cells left. Want to have my body is as good a shape as possible, so the healthy cells stay healthy.
Exercise - 4 laps around the Millenia Mall, which is two miles (I emailed their office to ask). I want to get some blood moving but not true exercise. Studies have now come out that say you should avoid mind and body stress for two days prior to chemo, as the stress causes your body to produce a protein that protects cancer cells from chemo. Yes, you heard it here. Of course, thinking about getting chemo is stressful in itself, but we all do what we can. At least I can minimize physically stressing out.
Food- Breakfast of Big Wood River Granola, Greek Vanilla Yogurt and some blueberries, Green Tea. Have been having this for eons it seems. Lunch of the Chicken Chop Salad at PF Changs (with friends!) Dinner is sauted artichoke hearts, garlic and onions served over Celegini mozzarella cheese balls and 2 oz of proscuitto, with some fruit and a croissant also.
Meds- taking the Dexamethasone (steroid) that Dr. M prescribed, which hypes me up but also is an anti-inflammatory I understand. The only other things he lets me take now are my nightly psyllium, magnesium, calcium, and D3. Oh, and two weeks ago he said okay to taking B-12 shots. And I can take an Ambien at night if I really need help sleeping.
The Boys Scouts motto of "Be Prepared" rings true today. I try to get all my ducks in a row so I can float as peacefully as possible the rest of the week. Spend time paying all the bills, answering all emails. Visit my Dad and sort out his pills for the next three weeks, neaten up his apartment.
Got all my stuff ready to go to chemo. Put out my IPAD with headphones, a cooler for ice cubes and a popsicle, a light pashmina. Wrote down on post-it notes who was bringing meals when, and who was driving me where and when all week long. Downloaded 4 of Bernie Siegel's Healing Meditations onto my IPAD. Tore seven pages out of a book, which is a written meditation to read during chemo I found this week. It specifically guides you to look at chemo as healing you. Wrote an email out to all my loyal friends asking for prayers tomorrow, and for specific prayers.
This morning, I went through visualizing every part of me healing, and praying for this healing. Meditated on Psalm 23, thinking about every verse in detail. Reading "Jesus Calling" by Sarah Young as my daily devotional.
A neighbor threw a cocktail party, with his visiting sons entertaining us with an Improv show. We went for one and a half hours, then I crashed. Wearing the wig. I napped in the afternoon for three hours, but there still comes a point in the evening when the brain and body start slowly shutting down. Can't process thoughts, start to get the clammy feeling you get when you are weak. It was great to be out and seeing neighbors though. I definitely wasn't this tired early in chemo. The effects are cumulative.
Day 1 of Chemo, Tuesday Sept 21
The Day of Chemo
Concept - Stay positive, be gentle on my body.
Exercise - Nothing intentional, just doing daily activities.
Food - Breakfast is 365 Frosted Mini Wheats - want something delicious and whole grains. Lunch is PF Changs' Gluten-Free Ginger chicken with well cooked broccoli and brown rice. Lots of tea and water. Lots. Probably asked for 6 refills. Took a to-go cup with me to chemo. Ate a mango popsicle when they started the Taxotere. Dinner is sauteed chicken, spinach and pasta, croissant and salad with no dressing. And watermelon. Watermelon tastes really good. And I drink a Bio-K CL1285 in the evening.
Meds- Taking the Dexamethasone as directed. At chemo they spray my port with Pain Ease, then first give me in pre-meds in the IV - Benedryl, Dexamethasone, a drug for esophagus spasms (first time I got this, and I can't remember the name), and Aloxi for nausea, and of course the IV bag to clear out the port (which is in my right arm). Then after these ran through, I got the Taxotere and then after that, the Cytoxan. Taking 5 tsp of L-Glutamine throughout the day, to protect my nerve endings. Before bed, because my digestive system will stop processing today, I take a Colace and a Sennakot.
Today, for some reason, Mike and I are both awake at 3 AM. I am on this steroid that hypes you up. My mind is naturally thinking about my 1:30 chemo appointment. I get out of bed, bake muffins, make some gazpacho for Thursday.
I go back to bed at 6 AM. I linger in bed as long as I want. Praying and meditating. Letting my mind wander. I read the day's devotional and then I think. I recite Psalm 23 and let my mind wander on each verse. I visualize healing. I am getting set up for the day, putting on the armor of God, preparing for healing to happen. Being in God's presence is the most important part of today's preparation. Just being with Him.
Went to the baseball office at 10 AM, went over some of the current events. At PF Changs at 11:15 with my nine friends. What a joy! I am pretty chatty, having trouble concentrating on the conversations as my mind is playing hopscotch. Main thing, I drink in the smiles and laughter. We talk about ear lobe lifts and nourishing soup and pole dancing for exercise and keeping the Sabbath holy.
Home to a surprise-a-rooni. S and S have placed fifty nine pink plastic flamingos alongside our driveway. CAN YOU BELIEVE IT! What a hoot! I jump out of the car and walk among them. I love it. Just love it! They look so kooky in our yard. Just perfect, I can't stop smiling! I have no idea of who did this!
Then to Dr. M with Mike, driving through the flamingos. They are running later than ever. I now know to tell the nurse to take my blood pressure with a wrist cuff on my left wrist, and to take blood for blood work from my right arm inner elbow, but don't use a tourniquet because I have a port near my elbow. I wear a short sleeved t-shirt so the port is easily accessible.
My blood work is all good. Red blood cells slightly low, just slightly. White blood cells and platelets normal. How wonderful that is!
I have four questions for Dr. M, and I write them down on the single sheet they have me fill out each time, a sheet which asks for any negative comments on each group of symptoms. When Dr. M comes in, he says How are you doing? I say, Happy to be here! He looks at my sheet, and we go over the issues. It was a good idea to write down my questions, they were answered. Now I know he is a better visual than auditory processor. These visits are less than five minutes each, he doesn't sit down. Looks at sheet of paper, answers questions, checks my heart, leaves.
1. Can we do anything about the nausea except Phenergan (which puts me to sleep)? He says, other anti-nausea drugs cause headaches, take the Phenergan and sleep.
2. Can we do anything about Thurs PM to Sat PM swollen glands, achy joints and muscles? He says that is how chemo makes you feel, take two Advil every four hours.
3. Can I do anything about my red blood count being low? He said it is fine, just barely low. Don't worry.
4. The symptoms of Inflammatory Breast Cancer showed up again after Chemo 4 then receded (swollen, red), even though the biopsy showed I don't have it. Do IBC symptoms come and go? Could biopsy be wrong? No, if it were IBC it wouldn't swell and redden then recede. If the swelling and redness lasts over 2 days, call him.
Okay then.
Into the waiting room, waiting for an IV lounger to open up. Quite crowded today. I get called back about 2:30, they start it up right away with the pre-meds. I keep my feet and hands out of the blanket, because that will give them slightly less chemo and I am trying to prevent CIPN (Chemically Induced Peripheral Neuropathy) which is tingling due to injury to the myelin of your hands's and feet's nerves. I drink water after water, and once the Taxotere and Cytoxan are going in, I suck on ice chips and cubes, again to reduce slightly the chemo to my mouth, which in turn reduces mouth sores and metallic taste in mouth.
I turn on my IPAD and put in my headphones. Listening to Handel's Water Music, first I pray. Lifting up Mike, Corey, Mack, Tray. Dad and Mac. Lifting up others. Then myself. It is such a compassionate, healing atmosphere in the chemo room, I think. It's the people that make it that way.
For the first time, I read a guided imagery written for chemo, about 30 minutes. Fantastic. Guides me through relaxing all muscles, then the chemo drugs flowing through my body from top of head to tip of toes removing any cancer, then protecting my healthy cells, then thankfulness. Then I doze off. Awake and asleep, on and off until finished. Picturing my body being washed with clear, pure chemo-drugs water, picturing this water flowing and eddying everywhere, getting any and all errant cells out of there.
I'm out of there at 5:30, back home. We reheat the delicious dinner waiting on the kitchen counter. We eat and then take a slow walk around the block with our basset hound Sporty. Relax and in bed by 9 PM. Watched a Seinfeld episode before bed. Still hyped up on the steroids, but tired from the events of the day. The train has left the station....
Day 2 of Chemo, Wednesday Sept 22
The First Day after Chemo
Concept - Stay positive and gentle on my body. The steroids make me feel jittery, my body has the chemo drugs in it so it is a little startled. I want to help my healthy cell's stay healthy and wash out the dying cancer cells.
Exercise - 2 laps around the Millenia Mall, driven down there by a friend. I don't quite trust myself to drive, everything seems to be happening so fast around me. My mind is a little foggy and sluggish. I enjoy hearing my two friends talk, and I contribute some.
Food- Breakfast of 365 Cherios. Lunch is Thai Crunch Salad at California Pizza Kitchen and Iced Tea. Afternoon snack of Matzo crackers. Dinner is baked chicken and squash and berries. Drinking water all day, I would say I consume a gallon of water, with slight flavorings (Pom juice, Gatorade, lemon). And I drink a Bio-K CL1285 in the evening. Warm water and lemon or warm chamomile tea feel so soothing to drink.
Meds- L-glutamine 5 times today. And since my digestion system has stopped, I take a Colace and a Sennakot before bed.
Awake at 10AM, I stay upstairs in prayer and thought. Just heavenly.
Different than prior times, my cheeks are rosy all day long. I have asked for prayer protecting my bone marrow, and here it is. I am getting plenty of oxygen! The symptoms of IBC are there just like the days after the last two chemos, red and swollen left breast, but I know I don't have it.
I go to the Millenia Mall with B and L, walk two times around and then break for lunch. That is one mile. I am spacey, and it takes quite an effort of concentration to listen to the conversation. But I enjoy it. I am hyped up yet tired. My body alternates between wanting to fall asleep instantly and having my heart race and blood pulse so loud I hear it in my ears.
When back from the Mall, I lie down at 2 PM. I can't fall asleep, but am too tired to read or focus on a television show. I listen to the Peaceful Soundscapes, Channel 434, and let my mind drift. Repeat Psalm 23 and roll each verse over in my mind. My body is fighting a battle, I can tell. My heart rate zooms randomly. Exhausted yet hyper at the same time.
Not nauseous at dinner time, but not hungry. My eyes feel tired. The port is very tender and bruised. At bedtime I can feel my joints and glands start to get sore. It feels great to lie down and fall asleep. I want to help my lymph system drain, as my lymph nodes and everything was very tender and sore and achy last time, so I sleep on two pillows on my back, to let the lymph in my neck drain a little better. Woke up three times during the night, went right back to sleep.
Day 3 of Chemo, Thursday Sept 23
The Second Day after Chemo
Concept - Gentle on the body, keep water flushing through to help the kidneys and liver and lymph system all do their job.
Exercise - None, I am exhausted.
Food- Breakfast of Greek Vanilla Yogurt and Granola and blueberries. Lunch is Gazpacho and almonds at home, and Iced Tea. Dinner is soup, slice of turkey and sweet potato. Drinking water all day, I would say I again consume a gallon of water, with slight flavorings (Pom juice, Gatorade, lemon - mainly lemon). And I drink a Bio-K CL1285 in the evening. Soups taste the best. I stay away from anything fatty, it has no appeal. My digestive system is still very sluggish, so no fats or anything difficult at all to digest. The warm water with lemon and chamomile tea are still favorites. Very soothing.
Meds- L-glutamine 5 times today. Neulasta shot (increase bone marrow's production of blood cells.)
Up at 10:30 AM to get Neulasta shot, getting a ride, and then back to the house directly to nap until lunch. I greedily lie on the little white sofa in the living room, under the quilted comforter, every chance I get. Seriously, I come in from the doctor's at 11 AM and fall right asleep.
Mike, Corey and B have lunch here, and I fall asleep after lunch. I put on one of Bernie Siegel's Healing Meditation tapes, and drifted. Very relaxing and positive, guided imagery of healing. Even though it's 90 outside, I feel cold.
Acupuncture at 2, driven by B. We do a minimum of points, not wanting to add stress to my body. Two for nausea, then liver, kidney, spleen, and lymph drainage. So peaceful lying there. I asked months ago when I started acupuncture, Could I listen to an IPOD while the needles did their work? What was I thinking. Forty five minutes of peace and prayer and focusing on my body healing. It goes by in a snap. Often I fall asleep. I love it.
Back home at 3:30, and off to sleep again. My mouth starts to taste metal, my feet are starting to tingle. My calves and neck are starting to be sore and ache, glands tender. By dinner I eat very little and just want to lie down listening to Soundscapes soothing music, very soft. Loud voices or television shows grate me like fingernails on chalkboard. My cheeks were rosy!
There was a roach in my bathroom this evening, and it freaked me out. I can say I have never been this scared of a roach. For some reason it scared me. To the point of crying. Sat on the side of the bathtub, staring at the roach crawling across the bathroom counter and sobbed. I didn't want to touch it. I wanted someone, anyone but me, to get that thing out of there. In Florida, roaches are a part of life. We all have them. Normally I would be the one who gets the magazine and WHOMP kills it in one thump. I couldn't handle it tonight. Who would have guessed?
Day 4 of Chemo, Friday Sept 24
The Third Day after Chemo
Concept - Let my body repair. All the dead cells from chemo are flushing out, and my body knows it. The digestive system has had a chemical peel, the lymph glands are swollen because they are doing their job. My joints and muscles ache all over, they have been hit sideways by the chemo and need to repair. Everything is tender to the touch. So today is pamper the body, gently.
Exercise - None, I can't even think of exercise.
Food- Breakfast was a pear. Lunch was chicken broth, egg and lemon (Avgolemono Soup) and Iced Tea. Dinner is soup and a small bit of pasta w tomato sauce. Drinking water all day yet again. And a Bio-K CL1285 in the evening. Soups taste the best. Digestive system limping along, needing replenishment.
Meds- L-glutamine 5 times today. I mix it with just a few teaspoons of water and drink it like a shot. It takes like chalk. And 2 Advil every 4 hours or so.
Dragged myself out of bed at 11:45. It was an effort, but Mike and B were coming over for lunch. Every inch of me ached, even the front of my legs. The most intrusive was my neck - couldn't move it without the ache. And my larynx, which has been a source of ache for two years, is really really sore. This is floaties day, when I see squiggles and floaties when I look anywhere - which I read is little tiny bits of your inner eye vitreus breaking off. So I keep my eyes closed a lot today. Nausea present, so just don't eat much.
Napped on and off all afternoon, B stayed and kept me company while I napped. Listened to my Soothing Soundscapes Music channel. My thighs twitched randomly all afternoon. Pretty massive twitches. J dropped off the most ethereal bouquet of roses. Since last chemo I got persistent leg cramps at night, I made to sure down an entire bottle of Gatorade during the day, diluting it with water. Chills on and off all day. No fever. Every inch of me aches.
I was so glad when bedtime came. I made it through FRIDAY!!!! Only with the love and kindness shown by my friends and family can I do this.
Day 5 of Chemo, Saturday Sept 25
The Fourth Day after Chemo
Concept - The worst was yesterday, behind me. Now it's feeling better and better each day. Listen to what my body wants. Be gentle.
Exercise - Walked around the block twice.
Food- Breakfast was a peach. Lunch was Cumin Meatball Rice Soup and Iced Tea. Dinner is Chicken and Cashews. Drinking water all day yet again. Drinking a Gatorade to prevent muscle cramps. And a Bio-K CL1285 in the evening. Soups taste the best. Digestive system limping along, needing replenishment.
Meds- L-glutamine 5 times today. And two Advil a few times during the day.
Up at 10 AM. Usually we have lunch with Dad today, but I couldn't make for a car ride (nausea.) He understood, putting our lunch off until tomorrow. All I did today was nap, interrupted by thirty minutes here and there of sitting up and chatting with Mike or noshing. L brought over Chicken for dinner, it was great to sit up and focus for a bit on conversation. A mouth sore has developed, but not so bad. Achy and sore glands less than yesterday. Metal mouth taste diminished but still there. The front of my lower legs burn, that's funny. My feet tingle. And my legs are wobbly, I feel like Gumby. But everything is feeling better than yesterday.
Day 6 of Chemo, Sunday Sept 26
The Fifth Day after Chemo
Concept - Feeling better every day, still being gentle though.
Exercise - Just everyday moving.
Food - Breakfast of rice/egg concoction. Lunch was Tomato Soup and turkey breast (at Jason's Deli) and Iced Tea. Dinner is Shepherd's Pie (mashed potatoes, ground beef and peas), salad with no dressing, Strawberry Cloud (strawberries, egg whites and cream). Drinking water all day yet again. Bio-K CL1285 in the evening. Want protein to help out body's repair and blood cell production.
Meds- L-glutamine 3 times today.
Up at 10 AM. Feeling nauseous, but able to go out in car to lunch with Dad. YEAH!
Larnyx is sore, glands and overall aches are less present. Slept all afternoon, then had visitors! B and C came over bearing frozen yogurt and strawberries, L brought a new recipe of soup (ever heard of a Soup Angel, that is her nickname in my book), then E and R visited bringing dinner. What a joy to sit in our living room, catching up with friends. You know, the best support group isn't a collection of people who share your same illness. I think the best support group is your family and friends, who love you and want the best for you, and shower you with kindnesses. The facts on what to do to heal can be found out by asking questions of doctors and of those who have walked through the illness you know. It is the kindnesses of family and friends that are the true support group. I slouch on the sofa, scarf on my head and quilt over my feet, listening to all the conversation and joining in. A great day!
Day 7 of Chemo, Monday Sept 27
The Sixth Day after Chemo
Concept - Over the hump, just rest and restore the body.
Exercise - On elliptical 10 minutes, then walking in the back yard.
Food - Breakfast is Raisin Bran. Lunch of Udon Shitake Mushroom Soup and Iced Tea. Snack of Mushroom Soup. Dinner is Pasta with Bolognese Sauce, salad with no dressing, Strawberry Cloud (strawberries, egg whites and cream). Drinking water all day yet again. Bio-K CL1285 in the evening.
Meds- L-glutamine 2 times today.
Up at 10 AM. Had no energy to do anything wild and crazy, or to do anything at all. Watched two movies (Legend of Zorro and My Super Ex-Girlfriend) which I napped during, so I missed crucial parts. Pretty funny waking up and having to figure out what happened.
All week I will stay in, maybe do one thing each day out of the house. If my body wants to rest to restore, I will let it. Being tired is frustrating, and this is such a funny tired, one I haven't felt before. But in the scheme of things, nothing at all to complain about.
It is wonderful being on the other side of chemo, with only one more to go. I started researching radiation today, need to learn about it ... ever onward and upward....
