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.
