Details of Chemo #5

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....

Stepping out of Chemo Cloud #3

First of all, THANK YOU for your prayers for healing... they are working. PLEASE keep them going. Each of you is precious for remembering Mike and I. THANK YOU!!!!!

This photo is Mike overseeing S making Red Velvet Cake.  She cooked all weekend. We dined like Julia Child was staying with us.

You know the feeling of laying down in your bed when you have had an absolutely exhausting day, and it feels so good to be horizontal and quiet and no lights on. Your body is so tired and your mind has been racing and you are at the point where any noise is too loud?

I did nothing all day Friday, but it was exhausting. At the end of the day, it was all my energy to walk upstairs. When I laid down in bed, my eyes popped open and I thought - I need you Lord. Just that, over and over.

I need you Lord.

Not, I want you or I trust you or I love you or praise you and I will follow you (which are all good things to feel and say, mind you.)

I need you Lord.

Every ounce of me, every inch of me, every part of me - needs you Lord. I can't do this without you. I need you right here, right with me, and don't leave me. Ever.

Never do I want a second without you, without your face looking right into mine and telling me you love me and you are my GOD.

Now we all know that it is not GOD's face that turns away from ours, it is ours that turns away from His. How perfect I just read the Prodigal Son Story, because at that moment Friday evening, I remembered how the Father, the compassionate and patient Father runs out to the Prodigal Son and then also runs out to the Elder Son. He runs out to them! When I speak the words "I need you", God our Father runs with open arms towards me. Its like He's been there all the time, just waiting for me to say them, and He is always always so overjoyed to hear me that He throws a big feast.  Not what my stomach wanted at that point in time, but it was a symbolic big feast.

I said Friday night and I say now, I want to always remember how completely I need Him. ALWAYS.

One of my dear dear friends, one of those heart to heart friends, who journeyed through chemo years ago said she had never felt as alive as she did during her months of healing from breast cancer (surgery and chemo.) I have been tossing that around in my head, and now I know what she means.

You feel most alive when you have that straight line of vision to God. When you don't have the distraction of day to day details.  When you have been immersing yourself in reading the bible and praying more than ever.  When others are praying for you.  Most importantly than all this, when you realize that you need to hand over control of every teeny tiny part of tomorrow to Jesus. When you realize you trust Him enough to lean out over the cliff into His arms and you know He will catch you, cradle you, carry you forward and up higher than you have ever been.

When have we all felt like this before? How about when your child is taken to the emergency room having trouble breathing? How about when the doctor tells you to take your child to a specialist, soon. How about those first few days after your mother dies? How about when your husband is diagnosed with cancer?

I have had this realization before, but I want it to stick this time. God is surely stirring Mike and I up. He's got something in mind, some way to tweak our lives, and I want to cooperate. It might be a lesson to learn, character traits to change, or something having to do with others' lives (this might not be about us.) But God is so efficient, I am certain He will use this journey for good for us. I really think so.

So, I need God. I knew that. But I now am dedicated to living it. It will happen. This is one big reason to be thankful I had cancer. A HUGE reason. Love to see the reasons, what a gift!

So, to describe the cloud. It seemed like a cloud this time, and yes you are all saying ... Sara, a cloud in the Old Testament is where God met man... yes thank you' all for paying attention. Even before I made the connection, this one felt like a cloud. Chemo #2 felt like a racing brook, with hot sun, that eventually cooled down. This one felt like a cloud, fog descending on me, like PigPen in Peanuts with his dust cloud. This was a cold, low visibility non-symmetrical sphere of humidity.

And you might ask, do I still remember that I need God?

I do.

I am thinking about how to stay on this path. I need moments alone with God. Listening to Him, being still before Him. Prayer where I am not talking, but I am just with Him. Not building up busy days and nights, but setting a gentle rhythm.

What is most assuring is that I am POSITIVE that if I ever, like the Prodigal Son or the Elder, start that turn away from Him, from knowing that I need Him even more than how you need water when you are thirsty after being out in the hot Florida sun all day long at a baseball game, I know that if I turn slightly away, He will call after me. He loves me that much.

If I ignore Him, just slightly, because that's what happens, He is in control. He will call out. Things just get so busy, I think I can do this or that without His guidance  It isn't a bad thing, it just might not be what He wants.

I will ask Him to constantly cleanse me, search me and find what is not of Him. Keep me here in this vision line where I can see Him. It is the most beautiful sight, towards Him. Especially when compared to a cloud...
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I'm going to describe the details of each day this week of Chemo, so skip this if you don't want to hear them, which is PERFECTLY OKAY. I am doing this for my record, and for anyone going through chemo who might be interested.

Chemo Day 0 - Monday (the day before)

Great day. Walked the Millenia Mall with S and D, had my favorite lunch there, half a Thai Crunch Salad with no edamame, no cilantro dressing, peanut dressing on the side, and some avocado added. At least five refills of iced tea and a water to go. Aren't you glad you weren't the waiter? Went to acupuncture. I think acupuncture has played a huge part in healing. C who does it is an angel, she radiates light and caring, and physically knows how to help out my body - helping get my healthy parts healed and protected from chemo, working with oncologist.  Paid bills, checked on Dad's and Mike's Dad's lives. Grilled pork chops,veggies for dinner. Watched Seinfeld.

Chemo Day 1 - Tuesday

This was a magnificent day. Just magnificent. Starting with some elliptical machine exercise (listening to my IPAD), lunch with seven uplifting and dear dear friends. So much fun. S came down again last night from Charlotte and will be here until next Wednesday, what a GIFT!!!! The doctor's meeting was short, chemo delivery itself went smoothly (its a non-event to me.) The nurse didn't twist the port as much, so there is no bruising, and it didn't hurt at all this time. One blip, I had a place that looked like a potential problem on the opposite side of the surgery site, so Dr. M. suggested I return to surgeon to have her take a look. She will decide if I should have a biopsy, potential site of another cancer. Wow. I am not going to worry, just do it.  Nurses at chemo are just so kind! Still on Avelox for the sinus infection which is much much improved, almost nothing by now. Still doing sinus squirt bottle every night (with salt and eucalyptus oil). Dinner from M, delicious Cuban black beans and rice and pork. I am definitely from Dexamethasone steroid, but now we know it and also we know it will fade in a day.

Chemo Day 2 - Wednesday

This is the funny day. Your brain is buzzing, my heart is thumping, and I'm a foggy thinker. I misspelled a word I have spelled correctly for 40 years. S and I met M at the Millenia Mall and we mall walked two laps (Monday we did four.)  I had that delicious salad again. I am drinking gallons of water, five L-Glutamine doses per day. The digestive system has halted, and I am bloated and retaining fluids. I look pregnant. I eat watermelon when I get home, and have a delicious dinner thanks to A. This is the day you feel like you have partied for five days.  Your body is exhausted, but your heart and brain are hopping excited.

We started reading Your Healing is Within You, by Jim Glennon. This was so important to Mike seventeen years ago when he was diagnosed with CTCL. I read it then, and parts in the past months. We are reading it out loud.

Chemo Day 3 - Thursday

Slept again until 11, then to Dr. M for Neuplasta shot (revs up your bone marrow to make new blood cells starting Sunday, a GREAT thing.) Lunch with Mike, S and L, was delightful. I don't know that I contribute much to the conversation, but love hearing them talk. Then to Dr. R, the surgeon, to see what's going on. I have had a rash on my left breast for maybe 5 weeks, but didn't mention it Chemo #2 as we were talking so much about the sinus infection. So Dr. R says it isn't an infection (I'm on a strong antibiotic), she wants to biopsy it. (I want to jump ahead and tell you I don't think this is cancer, but that's coming later.)


At the moment I am truly stunned. She is a good surgeon, and takes lots of time talking with me. She wants to biopsy it as soon as possible, but wait until my blood counts are high enough so it heals. So, Aug 23rd (11 days from now) she will do a biopsy.  The results will be back the end of the week so Dr. M has them by Aug 31,  which is Chemo #4. She thinks it might look like Inflammatory Breast Cancer, but you only know by biopsy. And the treatment, Chemotherapy! It would be one I am getting and they would add another.

I think God only lets you feel the emotions you can handle at the moment; I wasn't really upset. S and I drove home, she concocted a delicious dinner, and we all talked. I ate the world's best Tuscan Vegetable Soup thanks to my Soup Angel who lives next door. I'm starting to feel like I have the flu, glands get tender and swollen. All par for the course.

We read Chapter 2 of Your Healing is Within You, about praying for healing, being certain God heals you, and accepting that healing. Went to sleep, uncertain how to take this news/ non-news.

Chemo Day 4 - Friday

Mike and I woke up at 4:30, you know those times, when you just need to talk. How precious they are, your hearts are breaking but the thoughts and words are from that deep inside place that we don't go very often. Then we prayed. We prayed for lots of things, but the one item that is important for this writing is we prayed and accepted healing for me. For whatever is found or not found, that it is healed. And I can tell you right now I have no doubt that God has healed whatever is going on in me that is not perfect health. It might take some time and chemo treatments and prayer to become evident, and I will be patient. But I know He has it all under control. This new development could be one of several things, Dr. R said, the funniest is "idiopathic rash" which is true medical vocabulary for "we are idiots, we don't know what is causing this rash." So I am done worrying about the rash. And I am grateful for the peace that passes understanding! I will still get the biopsy on Aug 23rd, but I know God has this under control. He has healed it.

I asked for a sign, while I was praying. Bold I thought, but Gideon did it. I felt heat. When I woke up a few hours later, the rash was minimal. Hard to see. YEAH! It darkens and lightens randomly. Not something to notice and tell the doctor now! Minimal. You can barely see some pink. Not the dark pink/red and swollen of the weeks in a row before. Its just barely pink.

Friday of Chemo has been the toughest, and so was this one. You just feel like you have the flu, except this time every single inch of my body ached. My forearm was tender when you touched it, my calves were tender when I walked, if you touched the top of my head it was tender. All my glands were tender. So you just lie down, nap on and off, listening to my Channel 434 spa music. You know you will feel better tomorrow, and nothing hurts (except when you touch it, ha!) Food isn't particularly appealing... it was a day of soup, baked potato, and banana. We watched Animal House, mindless, and I napped through half of it. I was exhausted when I fell into bed.

Chemo Day 5 - Saturday

Waking up, you know you are better. Had funny calf muscle spasms in the night. Maybe need potassium? Stepping out of bed, its a little surprising, but I didn't ache. YEAH! We all went to lunch with Dad at Jason's Deli. I find that place feels clean. Delicious French Onion Soup and iced tea. Napped all afternoon watching Watney have the round of his life at Whistling Straits. Dinner again by S (last night Julia Childs, Jr made pot roast, tonight grilled chicken and RED VELVET CAKE, how pampered are we?) To top off the evening, we watching the first few ever episodes of Seinfeld - they weren't quite as funny back then: Kramer had flat hair, Jerry wore red sweatpants, and George was more of the intelligent one. Anyway, I am back. And it feels so good!

Chemo Day 6 - Sunday

I wake up at 9:30 - which is at least an hour earlier than all week. Nothing hurts, glands a little tender still in neck. When I look, there are floaters in my field of vision, which are normal and so funny. No more antibiotic for sinus infection, I am healing left and right! Raisin Bran tasted really good for breakfast. We are off and running...

Avelox and the rhythm of chemo

If you know what Avelox is, you know where this post is headed.

If you don't, well, here goes... For some reason I am compelled to write down the details of the days of chemo, so if you are not interested, I understand. And remember, I'll never know if you read this or not!

Chemo Day 0 - Monday (the day before Chemo)
I try to get ready in the best way possible. Take two Dexamethasone which prevents me from getting inflamed from chemo, but also hypes you up. I exercised a lot in the morning on the elliptical machine listening to sermon online, had lunch with two upbeat friends at Houstons, spent the afternoon paying bills and getting caught up on all the home-stuff, desk work. Checked in on the baseball league (and they are doing great without me) and asked for a prayer at the Glennon House. Just stopped in and asked them to pray for me, which they did right there.

Dinner was with Mike, peaceful, grilled meat and veggie. Dear friend S arrives to stay for seven to eight days as Mike is probably traveling later this week. Then a funny movie on DVD after dinner, one Seinfeld episode, and to bed feeling very peaceful. This is the second chemo so I think I know what to expect more than last time.

Chemo Day 1 - Tuesday (the day of Chemo)
Nice walk in the morning with S. Stopped in on L for a hug. I walk around feeling as if I am in a daze, all buzzed up on steroid.

Lunch with S, M, M at PF Changs, eating ginger chicken and well cooked broccoli and rice, lots of tea and water. Want to super hydrate. I'm into hydration. Took my Dexamethasone. Not supposed to take any vitamins, minerals (except calcium, magnesium and D3) the entire time. No herbal supplements. Have Colace and Miralax for digestive inspiration. Drank a BioK (liquid yogurt), which I think is good for the digestion system that will get a shock today. Dr. M is okay with any food, not with juicing foods or supplements. I'm on that page too. After the chemo, then we can see. But now, I don't want to do anything to counteract the chemo's work.

Arrived at Doctor M's at 1:15, got blood work done, they gave me some IV's first - clean out the port with heparin, then Benedryl (antihistamine) and Zofran (anti nausea).  This all takes 20 minutes. Now starts the chemo itself, the Cytoxan. When that bag is done, then the Taxotere. I eat ice chips and drink water (the ice is supposed to prevent mouth sores). I am the first in and last done, at 5:15. S waited in the waiting room. Mike went to work after the doctor visit (5 minutes away).

I am trying to picture different visuals during chemo. I like the little clear and pure brook, pure cool water just meandering down through a field. Like my Correll grandparents property in Bernardsville. I see the grass and moss overgrowing the banks. Willow tree leaning over the brook. I am lying down on the moss and watching the water. Once in a while a leaf floats down. Smoothed stones on the bottom of the brook. The cool pure water is the chemo flowing along, gently carrying away what isn't needed.


I also see the ocean, the aqua/ teal/ blue marine color of white sand under the ocean, gentle waves, white foam, endless water. I used to tell Mack and Corey that a wave meant that a whale was jumping someone way out in the ocean. Ocean water is so soothing, so calming. You can bob up and down on a gentle day, or sit on the beach and just listen to the waves and watch them in and out. And across the horizon is another beach, of people looking back at you. You just can't see them, but they are there. The gentle waves are the chemo, washing out the cancer cells.

One of my dear friends who has been through this says she envisioned a porch swing, and God rocking her in it. I like that one too.

After Chemo S sits with me in the car, going over the whole afternoon. How wonderful to have a listening ear and empathetic heart right in the car next to me.

So then we arrive home about 6, have dinner delivered from a dear friend. I am so jumpy, nothing hurts, just hyped up. Delicious picadillo and yellow rice and salad. Just delicious. How cool is this, people bring us dinner. The atmosphere of the house is peaceful and tired. We are all a little anticipatory for the rest of the week. S and I go to Whole Foods after dinner to get some watermelon (somehow that seems appetizing) and L-Glutamine (an amino acid Dr. M says to take 5 times a day for 5 days, helps reduce nervous system side effects. I take it.)

We watch some recorded Seinfelds, I can't watch any crime shows or anything negative, just can't. Or even anything deep. Seinfelds are hysterically funny. Just have no tolerance for scary or negative stuff coming into any of my senses. Off to bed around 10, sleep all night. Well, I am 53 so I get up once to go pee, but so does every 53 year old woman... And I have had 2 gallons of water to drink today, I think. Seriously. One response to chemo I am noticing is your digestion and processing slows down. So I eat watermelon and take one Miralax, knowing things will be slowing down. That is, constipation.

Read Phillipians 1 before going to bed.

Chemo Day 2 - Wednesday
Wake up with Mike at 6 or 6:30 but I am able to drift in and out of sleep until 10. Amazing. It is a great time to pray, I love that. Absolutely love that. This is the "Being still and know that I am God." I have never ever been able to lie in bed for hours, praying and thinking and drifting. And, well, the time is now!

Listen to my body. Was up once during the night, that's normal. Set to walk the Milennia Mall with M and S, so we leave about 11, walk three times pretty leisurely around. Great as it is air conditioned (its 95 outside), and open and airy and as malls go fairly peaceful. Eat a good lunch there, of turkey, avocado and asparagus soup. LOTS of water. Waiter is wondering what is going on! M and S are so kind, love to hear them talk. I don't think I am contributing much of substance to the conversation, but they don't seem to mind.

Roses dropped off. A burst of beauty. Colors you can't believe. Kindness is a really really nice thing.
Feeling spacey. Nothing hurts, nothing aches. Feeling jumpy, drop things a lot. A lot. I am putting antibiotic cream on the two biopsies on my scalp, wearing the wig outside the house, a scarf or 1950's terry cloth turban inside. My port's in my right arm, and it is very bruised from the chemo. I can't wear any fabric over it. The location is something I am still getting used to, as you bump it constantly against the side of you when you walk (maybe I really sway my arms?) Or when you lie on your back it touches the sofa. But in the last chemo cycle I got used to it the last week and it didn't ache at all. Just sharp jabs down the length of my arm if I twisted my arm a certain way. Right now, it is just annoying.

I am scrubbing my feet, as I want them clean. And I am brushing and flossing and using Fluoride rinse two or three times a day, as I had two cavities but the dentist said they were shallow and lets wait until after chemo to fill them. It takes forever to get ready to go downstairs in the morning!

At home, I take a nap, and wake up for dinner spacey and jumpy. Bloating is uncomfortable. More watermelon. I feel like I am pregnant, look like I am pregnant. I want to drink lots of water to help my kidneys and liver flush out, and my body wants to hold it all in! My heart rate feels like it is 100 BPM. Racing and racing heart. No headache, which is great. Napped in the afternoon.

The precious friend who was to bring dinner emails that she is ill and can't bring dinner. I don't check emails, but we figure something was up and S throws together a fantastic dinner from what we have in the refrigerator, how cool is that! Thank goodness my friend didn't cook while ill. God provides, it all works out.

After dinner, starting to feel really tired. C stopped by this evening, so good to see him. For me and Mike and S. So good.

To bed, slept well.
Read Philippians 2.

Chemo Day 3- Thursday
Again, lying in bed until about 11, praying and dreaming and thinking and dozing. Came downstairs and Suzanne is here waiting. How wonderful to have someone here, to walk through this with me. Exercised on elliptical machine for twenty minutes, feeling good. Went to Dr. M for Neuplasta shot (which spurs your body on to make blood cells in a few days, just as your own are dying out) and I only needed half dose because my white blood count was good and high when I had chemo Tuesday. I feel so excited, like I have accomplished something? Don't know why.

Lunch with Corey and Mike and S at First Watch, felt like an omelet. Still downing the iced tea, water and L-Glutamine. Very tired afterward.

Elevated heart rate, port still feeling bruised. I think a battle is being fought inside my body. I can feel the little soldiers with their little swords. The cool thing is, I know who wins... the good guys. I am so spacey I talk to the soldiers out loud, tell them they're doing well.

Acupuncture in the afternoon to help with digestion, nausea (which I don't have), and overall immune support. Slight fever in evening with hugely swollen glands in my neck. Headache starting over eyes and under eyes. Only soup for dinner. Mike and S ate fantastic pasta and soup and homemade blueberry pie. I had some pie too. B brought us a little sunshine.

I am feeling not so good. But slept well. Boy it feels great to lie down in bed each night.
Read Philippians 3



Chemo Day 4- Friday
Up at 11, glands in neck really swollen and eyebrow and cheek sinuses throbbing. Took long hot shower to try to get things clearing out. Tired. After being out of bed thirty minutes, ready to go right back to sleep. Had lymph massage and fell asleep on table. Very spacey, need to say things out loud as I do them. Really glad I'm not signing any legal documents. S is awesome, as I wouldn't know what to do if she weren't here.

I want to go to the mall and walk for exercise. What am I thinking? Thank goodness she just ignores me and takes me home. Immediately fall asleep. Nap all afternoon. Don't want loud music, loud talking, the cars all were driving by so fast and aggressively. Don't want to listen to Ellen DeGeneres talk showbecause the clapping and laughing is too loud. The dryer signal sounds like a fog horn. Digestive system has gone kaput, ate two crackers and chicken broth and mashed potato.

Fantastic pot roast and mashed potatoes and green beans brought over, this is so nice. I never knew how much these dinners meant. Mike and S ate it up, and we have enough for us for in a day or two. This is so nice. Those mashed potatoes, what a great invention in the food world. What a genius thought - lets cook these bulbous brown roots, add some butter and salt and milk, and for some reason lets take a stick and break them up so it is all mushy. You don't do that with, say, watermelon.. But thank you whoever did it first with potatoes.

And a Murano glass Christmas Tree as a gift, straight from Venice, as what a celebration Christmas will be when this year is over! Cool!

At 6 PM temperature is 100.9, at 7 PM its 101.2. If fever is over 100.5 you have to call the doctor on call. So I call the doctor, and its after hours so I get Dr. G calling me back, who is wonderful. He asks what my white blood count was Tuesday, and if I have any drug allergies. Glad I have my blood work sheet handy. He prescribes Avelox. Seems I have an infection. I guess it is the sinuses, which has been lingering since the week before Chemo #1. Now I can take Advil, which helps the headache. I take a hot shower, clear out the sinuses some, and fall into bed. I count on the Avelox working.

God's just gotta do this. You know, this is where you trust. All the conversations I had been having about faith and trust and believing all of a sudden got real. Here, I have an infection that needed "a drug of last resort when all other antibiotics have failed." And you know how easier it is to be positive when you have just had a good run listening to your new, upbeat playlist? Well, that wasn't me Friday night. I felt like poop. Neck glands large and tender, throbbing head, so tired I could just fall asleep at any second. And that's when trust comes in. God was in control and I need not worry one second. If the fever was still there in twenty four hours, it was to the ER I would go. Well, it was really up to God how this was going to play out. Just lay back and let Him work, through the doctors and family and friends. So I did. And He did. And yes, it was so nice having Mike and S there. I knew they would be here with me all night. How nice to have someone to stay watch through the night.

Read part of Philippians 4 - Mike and I got distracted by the verses in it he had emailed me weeks ago:
6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Chemo Day 5- Saturday
Up early again at 11 AM (that's humor...)
No fever. (Digital thermometers are great.)
Sinuses still throbbing, but better (be patient Sara).
Long hot shower.
Heartbeat still high, figure the body is working!
A cracker and beef onion soup and chicken vegetable soup and a yam.
Walked around the block.

We all took Dad to Jason's Deli for lunch. I think this is important to Dad, to see me. And I can muster up one hour out. He is very pleasant to be with. He doesn't drive, so this is his outing. He walks really slowly. And today he walked faster than me.

Slept all afternoon. Played Scrabble in the evening, even beat Mike once. Which proves my head wasn't so spacey! Again what a comfort to have S here, just here. We are all reading, watching a little television, on our IPADs and laptops.

We got an offer to stay at a friends house in North Carolina in September. WHAT A GIFT! I don't want the germs of a hotel, and now we have a rejuvenating week to look forward to. How much easier when you have something to look forward to! Can you believe how kind people are?

And my throat isn't sore! YEAH! It was sore in chemo #1, but isn't now! That's improvement! That's improvement.

S made dinner, grilled chops and veggies.

The fog is clearing. Nausea still there, but it is so handle-able. Really is. I am trying to listen to my body, for what it wants. Can't my body learn to speak a little louder? Oops, watch out what you ask for, because it has been speaking pretty loudly the last few days. I'll be patient and I will listen carefully... God, I am so glad you have a sense of humor.

Finished Philippians 4

Chemo Day 6 - Sunday
Up at 10 AM.
Head still throbbing. I tried a Neti Pot for your sinuses, that tells you how desperate I am to get my sinuses cleared. NEVER thought I would do one of those. But I asked S to buy me one yesterday, just in case. The things you end up doing. Never say never. It seems to have improved the situation.

Woke up in middle of the night with the sensation that there was someone spraying water on the bottom of my feet. Not hurting, just tingling. Interesting. That stayed all day.

L-Glutamine is done for the cycle, phew. It is just chalky tasting, but hey if it helps protect, I'll do it.
Still doing Bio K intense yogurt daily.
Read about Avelox online , which tells me to not take Magnesium near it, so I won't. Glad I read that.

Mike and I went out to lunch at Croissant Gourmet. Some places feel clean and fresh, and smell that way. This is one. Everything is fantastic there. Apple Turnover and quiche. Appetite's returning. We walked a few blocks in downtown Winter Park. Its hot out.

Head is settling down. Just a dull ache. The port is still bothersome, but I don't feel it until it touches something. Napped most of the afternoon.

S made oatmeal cookies from scratch that were so fantastic we can't stop eating them, and she cooked all afternoon - a gourmet feast - a fantastic marinated chicken (grilled), roasted peppers, quinoa, and green salad. Corey and T cane over for dinner and a movie. How precious it is to sit at the table, talk and laugh and eat good food. And then the movie- Hitch. It is so funny I laughed, we all laughed. You have to laugh every day. Just the perfect evening. If you haven't seen this movie, and you want to belly laugh, go for it.

Read Henri Nouwen, Bread for the Journey

Chemo Day 7 - Monday
Woke up about 9 AM, with just fleeting little blips in my lower back and pelvis. This is a good thing- this is blood cells being churned out by my bone marrow. I love it. With less Neuplasta, I probably won't have any bone ache, or minimal. That started Sunday afternoon last time.

Sinuses feel better, no throbbing at all. Just like they are sore. This is fantastic.

I still am a little weak, just need to nap and treat my body gently. The first chemo round I was so proud of being on the elliptical every day for a minimum of twenty minutes. This time, I'm letting my body heal, and walking is just fine for exercise.

I feel very proud of the vicarious exercise I get every day from S. She was up at 7 AM every day and does pilates, yoga, ran, walked, jogged, ab crunch, power crunch, crunch crunch, all at the YMCA. Just hearing about it every day makes me tired..

One episode of Seinfeld, then to bed.
James 1

Chemo Day 8 - Tuesday
Woke up at 11. Still the chills / shivers going through my hips... which is the sign my bones are cranking out new blood. The antibiotic's definitely healing the sinus infection. The digestion system is meandering towards normal. Meandering. I really think about what I am going to eat. Should it be raw vegetables/ salads or stewed vegetables/ soups. Which is is? I know I am learning to listen to my body more. Learning.

Still sleeping 16 hours per day. Came home from walking, I was going to lie down for 30 minutes, and then 2 hours later emerged. Mike's in NYC for the entire day. We watched Don Juan de Marco (with Johnny Depp).. what a great movie - the power of the our thoughts and the beauty of romance. Seeing Faye Dunaway and Marlon Brando giddily in love, dancing on the beach. It's such a good one.

Chemo Day 9 - Wednesday
Tired, but back to business. Digestive system is doing well. Still sleeping till mid/ late morning. Trying to be gentle on the body, no 45 minutes on the elliptical. When I take the Avelox, my stomach is just plain upset for a few hours, but fades. If this were a year ago, I wouldn't even notice it. But now, I seem to be heightened to any misstep in my body.

I do not want to obsess about things, but I don't want to be a fool and ignore something. So, if I notice something off, I analyze it, should I do something, and if no, then it gets lifted up. If I should do something, then I do, and THEN lift it up. The port still just bothers me. It is still bruised (its two inches above my right elbow, on the inside towards my body). You just bump it all the time, and even sitting down, it rests against your body. Doesn't hurt just knaws at you. Oh well... Ate the fantastic Thai Crunch salad at California Pizza Kitchen with S, no edamame, only peanut dressing and its on the side. Walked the Milennia Mall 2 times.

I failed on the keep calm, trust God part this afternoon. We delivered all the containers from dinners. S drove, the Navi in the car navigated (isn't that the coolest invention... I like the Australian accent choice.) Late in the afternoon I got a text that the power had been off at our house, I misread it, I thought it had been off for four hours, but it had been one hour. We have a full house generator that didn't kick in. So, the whole way driving back to the house I am panicked - calling the power out number telling them they have to fix the power line. What should we do, book into a hotel for the night (it does get hot in Florida without air conditioning.) I didn't yell or cry, but I definitely was panicked. We get home, I try to fiddle with the generator, and within 15 minutes the power goes on (not by me.) Problem over, and I didn't trust that it would all work out beautifully. Oh well, I failed the "Don't sweat the small stuff, and it's all small stuff" test. I am not perfect...

Chemo Day 10 - Thursday
S left. I was really sad. On the positive side, I am certainly physically better and able to take care of myself. On the sad side, how wonderful to have someone right here to walk with you and she just left (I mean that figuratively and literally).

I remember going up to the Poconos as a high schooler, being an au pair for a weekend for a family. Putting one of their kids to bed one night, she was opening up a Snickers candy bar (which in retrospect tells you I probably wasn't the best choice as a babysitter as I didn't seem to think there was anything wrong with this eight year old eating candy in bed before sleep). She was sitting in bed, opening it up, broke off a piece and handed it to me. I said I didn't want it, and she said, 'But things always taste better when you share them." Wow. I can remember that moment right now. And that's it, anything and everything is better when you share it.

I am still tired. But now is the time to catch up on all the things that have slipped by for the past 10 days...

This chemo is do-able. Very do-able.
I think without the sinus infection, Chemo #3 will be easier.

Without Mike and S, without my kids, without my friends, without your prayers, I couldn't do this.

With you all, we are doing this.

Life is good.
God is good.
And every day is a beautiful day.