Chemo #6 is history - Mountains and Valleys

The plan from the beginning was six Chemos, and we did it.
We all did it.
WE DID IT!

Mountains and Valleys.
We walked the path of chemos.

Guide me in paths of righteousness, for Your Name's sake. Psalm 23  

Sometimes out of breath, sometimes with tears in our eyes, sometimes head tossed back to belly laugh. Sometimes alone, sometimes hand in hand, sometimes as a group.

Sometimes forgetting, sometimes tripping up, sometimes reaching to pick up.
Sometimes giggles, sometimes ethereal moments of heart connection.
Sometimes sadness, sometimes joy.

Questions, doubts, certainty, clarity, trust.

Sometimes eyes looking up, sometimes eyes cast down, sometimes eyes looking at each other.
Sometimes napping, sometimes sitting and wondering.
Sometimes wandering.

Then being still, and knowing.

Our kitchen sink area - gifts from friends, kids, family, and travels.

Three weeks from yesterday, I will start radiation. Need to make that appointment today. That's the directive from Dr.M and I will follow it.

So how did yesterday go, you might ask? It was a day of mountains and valleys. All in one day.

As before, I have a list of at least a dozen tasks to get done Monday and Tuesday. Got them done, phew!

Funny one with Dad, he said his television wasn't working correctly. He has a new big screen television with a controller that is so complicated, how can you help pushing incorrect buttons and reprogramming it? Well, he had it on truncated screen (so the scores of football games were hidden on the bottom) and I could fix that pretty easily by changing the VIEW setting. He had also hidden by mistake all the channels except two Spanish language ones, QVC shopping, and PBS. So he had only four of his seventy five channels available and those weren't the four he wanted. He watches the weather channel and ESPN mostly. Anyway, I now know how to program his television, and I know to check it often. We got him this new television when he said he couldn't hear the old one. The volume was broken, he just thought it was his hearing fading. He is not a complainer....

Anyway, got to my fun lunch at 11:30 with a group of women who have been God's hands on earth for me. They have been friends of mine for fifteen to thirty three years. Texts and emails and meals and visits and flowers and books and mall walks and store trips for needed undergarment items and sitting with me when I am napping and soup and cookies and pashminas and hospital visits and ice cream drop offs and taking me for appointments and socializing with Mike and I when we weren't overly social but needed companionship, and prayers. Prayers. Prayers.

I also have a pair of dear friends who have met me for lunch the day before chemo each time. Aren't routines comforting? This was the very definition of comforting. Surrounded by women who I have known a long time, one since college (and that's a LONG TIME!)  And with whom I have marched through so many life issues with. Don't you love it?

So, from that mountain, I passed into a blah valley. This is a person that I had an uncomfortable conversation with a few months ago. Anyway, I think I acted polite yesterday, but inside I was saying to myself, I want this conversation to stop! I have places to go, like CHEMO! I was resenting listening. Since I knew the last conversation we had was a bit dicey, I was extra nice and tried to focus. I knew at the time that God intended for this conversation to happen. In fact, I told Him that right there, while they were talking, that I don't understand it, but I will listen. I was trying to politely pull away. So yes, finally I did the "Gotta Go" probably too loudly. And I was running late, got home late, had to do my last two tasks too quickly, forgot my head phones.

Mike. Business has its mountains and valleys. Daily. He had a valley yesterday morning too. He had a mountain Monday. What a life, who needs soap operas! He couldn't have been more gentle with me, but being married thirty two years, I could tell. Marriage, you can tell. You share the mountains and valleys.

Well, then comes a mountaintop.  We had the best visit with Dr. M ever. Can you believe it? My blood work was acceptable. White counts slightly low, only slightly. Red blood cells normal.  No fever, no tingling in the nerves of feet and hands, no infection at incision area. So Chemo #6 was on.

We talked about radiation. He explained that Chemo gets to all the cancer cells that might have spread through the blood to your body. Since I have five incisions, those scars and removal of some blood vessels during surgery prevent the chemo from acting thoroughly on the area immediately around the tumor. So radiation zaps any cancer cells that might have spread adjacently. This makes complete sense. He wants me to start in exactly three weeks, so I will. We talked about the kind of radiation - IMRT vs GATE. He said they were the optimal machines, and were equal, just by different manufacturers. (note, he was not quite right, read description in later post about radiology oncologist.) Both are available in Orlando, aren't we lucky? And we laughed at the end of the appointment. Great appointment.

They were running late, so I could process why I was so peeved over the valley of the conversation above. Normally, I think it wouldn't have bothered me at all. Or only slightly. But hey, I had things on  my mind and my soul. Trying to stay in the light and positive in all things while in Chemo mode. To do this, I started reading a document of verses on healing I have taken to each chemo, and that was good but my soul wasn't restored. So I borrowed the nurses' headphones, and listened to the last nine minutes of a sermon I had downloaded on my IPAD and hadn't finished.  Now, you know what I am going to say. This last nine minutes was exactly my predicament, just change the names and location.

In general, you need grace in any relationship. With some people, you need more grace than others when interacting with them. I think you have experienced this and know just who those folks are. But every interaction we have is an excellent opportunity to share a glimpse of God's kingdom. Sometimes we need a little extra grace to be able to do that. We don't do this on our own. We don't do any of this on our own.  I blew the opportunity to take the highest road and be uplifting. I was polite, but I know I was trying to slide away.

So I learned, from the sermon, you include people into God's kingdom by practicing grace. I don't do it because I want God to love me more. I do it because He loves me unconditionally and that loves pours out into me and flows through me to others.  And others means everyone.  Absolutely everyone. This is what I want.  I failed in those fifteen minutes yesterday. BAM.  When I had the opportunity I fell flat on my face.

I want to live transparently, and it makes me restless when I am not. That is a good thing, to be restless and unsettled when you know you have something God wants to tell you about yourself. God has forgiven me (I asked Him) for not being His hands and heart for them.

Isn't it the best thing that God lets you feel unsettled when you have something inside you need to work out? I always want to be this sensitive, so any anxiety or any diversion from the path God has set for me gets pointed out and dealt with and corrected right away. Do not let it linger.  Do not let it interfere with the freedom of living every moment in God's presence and light. Not ONE MOMENT in the darkness. How cool is that?

Psalm 139:
Search me, O God, and know my heart; test me and know my anxious thoughts.
See if there is any offensive way in me, and lead me in the way everlasting.

So then I could move on, focus on the chemo. And I did. Put on my meditation music (Ken Davis and Steven Halpern), and took up my five pages of written guided meditation especially for chemo treatments. It was wonderful. I didn't fall asleep.  I read one paragraph, then closed my eyes and pictured the healing, then another paragraph, etc.. This time it was a strong hand pinching cancer cells, smushing them to smithereens. And then clean, clear water being wiped with the same strong hand over my organs, keeping them cool and refreshed and not letting the chemo linger and damage them. Keeping the healthy cells healthy. And anything that was not a healthy cell, it would pinch and smush.

Then I had a surprising image, which was good. Fuzzy honey bees showed up, and they were buzzing around my body, inside, and would pinpoint sting a cell that was damaged by the chemo, not hurting the healthy cells right next to it. I am really scared of bees, but wasn't scared of these. I do know that bees are focused on being accurate, and they don't give up easily. I liked that about these. They were my killer T cells following after the chemo, finishing up the job on any cancer cells

After chemo, back home for a little dinner. The dinner volunteer must have forgotten, but you know God provides and Mike and I threw together pasta and sauce and chicken from the freezer. It always works out.

Mike and I talked about the future. A milestone was passed for me; and maybe also for Mike. In that  moment you can talk about the future, honestly and with vision. We hadn't been doing that much as we were both in survival mode. Future, let's figure out how to survive this week, this day! Mike still has responsibility for his mother's estate and his father with Alzheimer's in Idaho, and his developing projects. And for me. Quite a year for him.

A day of mountains and valleys, which is a beautiful view when you look back on it.

I know God is stirring us up, and is in total control. I like that.

I know radiation isn't a cakewalk, but what a joy to know that another HUGE chapter is closed.

Thank you for your steadfastness, your loyalty, your prayers.

Now on to the next chapter...

PS If you wonder what the photo of all the trinkets is, that is my kitchen sink with wonderful gifts from friends and family.. inspiring me. 

Definite Decision

Proverbs 3:5-6
Trust in the Lord with all your heart;
do not depend on your own understanding.
Seek his will in all you do,
and he will show you which path to take.

 

Prayer works...

Rarely in my life have I felt so surrounded by prayer and so certain that God was right there with me ...in the room with Dr. M and I this morning.  A twenty minute discussion.  I can not tell you have much your prayers and e-mails meant to me as I was driving there, circling up six levels of the Florida Hosp parking garage, winding my way through the elevators and then sitting in the waiting room. I sat waiting for thirty minutes in the waiting room and read over your e-mails, over and over.

The meeting didn't go quite the way I thought it would. I left truly surprised. Shocked even. It took several hours for his news to sink in.  After reviewing all my records thoroughly the night before, and after spending time rereading studies on chemo treatment for my kind and stage of breast cancer, Dr M has no doubt in his mind that I need six chemos total  (one more.) This is definite.  Not the ambiguity I heard at the last appointment. There was no thought of giving me a choice he said, unless I physically didn't think I could handle the temporary side effects from chemo. Right.....

The tumor I had was small but very aggressive (his words.) I said, Aggressive? He said, Yes. Very Aggressive. Whoa horses, that is a hard pill to swallow. He said, It had, surprisingly for its small size, already gone into one node, and there is a good enough chance that some cancer cells had spread elsewhere through vascular means. So six treatments of a high dose of two chemo drugs at once is the recommended treatment to get the cancer cells that had spread. The studies are not ambiguous, he said.

So what about the nerve damage I am seeing, and my heart and liver and bone marrow we can't tell? He says, as long as my nerves are totally healthy at the time of a chemo, any effects of the chemo are reversible. He doesn't want to do a chemo until my nerves are completely happy. He wants to delay the last chemo one week to give me more time to get healthy, so it will be Oct 19. As for my bone marrow getting damaged (leukemia), well my white blood count, red blood count, and platelets are normal even today (only two weeks after a chemo) so he says my bone marrow is healthy and not being affected to the extent we would worry. He said my heart and liver, according to today, both look healthy and not to worry at all about them ...at all.

I asked, But you gave me the choice of four or six before. In fact, earlier you said four were definite, and the next two were maybe too much. He said my body has stayed really healthy through all the chemo, which is not the norm. And in his review for our meeting today, he went back to the original studies for this treatment and thoroughly looked at my records and reports and tests, and it was clear. Six treatments.

And of course I asked, if I were one of your family, what would you say? He said, with your blood counts, definitely do #6.  No question in his mind.

Bottom line, by him, I have a higher probability of breast cancer returning than lasting damage to my nervous system, heart, bone marrow or liver.

The big answer to prayer, Dr. M was definite. There wasn't any choice in his mind.

Thank you God for definite.

Thank you God that he reviewed my records again and reviewed the original studies.

Thank you God that all of your prayers (my friends and family) were surrounding this decision.

And

Thank you God I will get one more chemo, which will be the nail in the coffin for any cancer cells still in me.   Watch out little cancer cells, this is the final goodbye!

How wonderful that two friends, L and S, were mall walking with me today, so I got to tell them all this right away, process it, and get some exercise. I was still in shock when they first saw me, and must have babbled on and on and on.

Then I went, by Dr. M's guidance, to the surgeon Dr. R this afternoon. Seems I have an infection inside the left breast, and will get some IV antibiotic at some point over the next two days. Compared to the first discussion, this is small potatoes!

J prayed for me. I dropped by her home. I have never, that I can remember, dropped by someone's home to ask them to pray for me. I felt like I needed it, and I wanted her to pray. It was around lunch time, she was home. We talked, she prayed. I went in a little shaky, and came out with the peace that passes understanding growing stronger in me. Growing....

Dinner with Dad, talked with Mike (he's in Georgia), talked with B and Mack and D. I knew I needed to process this because I would be alone all night, needed to get this settled before the sun set. You know that feeling? Visited L to process some more. I am so blessed with all of you. Doesn't God provide more that we can ever ask?

Honestly, I am a little scared right now of actually going through Chemo #6. I was mentally done with chemo and looking ahead to starting the six and a half weeks of radiation.

But on the good side, I am one hundred percent confident that I need Chemo #6, that God's path includes me doing Chemo #6, and that I will not be alone for even one second.  Let my thoughts feed my feelings.

 Ever Onward and Upward.....

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. 

------------
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....

Tips for Chemo

Its been a long time since a new blog entry, five days in fact. I kept the 'Avelox and the Rhythm of Chemo' updated, non-fiction and data entry. It  takes me a heap of energy to accomplish what six months ago was so easy.

This is my week to get me back up to speed, my Dad back on track, help out Mike and get our home ahead of the curve operationally speaking. Mike has had a huge amount of work on his mother's estate and father's behalf this week, and also with his business over the past two weeks. So me being back on target for handling our household operations is really a good thing. We just had lunch with my dad, who is peaceful and content and throws in a joke once in a while, just keeps on going. He loves ice cream and watching the Weather Channel. His apartment has a huge window overlooking a lake, and he watches the Florida afternoon storms build up and pass by.

view from our porch, over my red toenail, laptop is on my lap

Things that have been really helpful through chemo:

1. Headscarves. You want square and cotton, not the elegant silk Hermes ones. 30 or 31 inches are perfect.  I bought seven online.  I have one that is 36 inches,  too much material but I use it anyway. As with any shopping, I am attracted to buying the patterns - paisley or French Provencal. But you can only wear them with solid shirts. So you do need some solid ones to go with those dramatic Lily tunics. Light colors look too washed out. My skin seems to be getting yellower, and I definitely have dark circles under my eyes, so a little color is nice. I have some pink blush I put on, but I am not a makeup person. I am afraid if I put on mascara, my eyelashes will fall out when I clean it off (they are getting thinner.)

So the ones I wear the most are the 30.5" cotton blue/beige paisley, and the 30.5" cotton pink.

You know to get a liner for your scarves or wig. G suggested cutting off the sleeves of t-shirts and using that as a liner, just pull it over your bald head. It works perfectly. So comfortable, absorbs the perspiration. Washable. Do it.

While you are at it, you will need something really comfy to wear sleeping. Turbans. Get one or two terrycloth or cotton turbans that are so comfortable you will sleep in them. Your head gets cold at night.  I ordered these online also.

2. Dinners. Delivered by friends. OH MY GOODNESS this is such a gift. Chemo Day 1 and Day 2 you do have energy so you could cook dinner, but I was dropping things and my mind wasn't thinking anywhere near linearly. Then Days 3 and 4 I was exhausted and getting to where the only food I wanted to be near was chicken broth or Gatorade (not my husband's favorite dinner choice.) The leftovers we ate on the weekend, and weekends are easier for my husband or dear friends to prepare food. Then Days 7 and 8, dinners delivered let me focus on a little walking and acupuncture and healing during the day, not cooking. What a gift. I will cook dinners for anyone I ever hear of who goes through chemo. What a gift.

Also, you don't want to smell food cooking on Days 3 to 5, another blessing from friends bringing over dinners. So swallow your pride, let others show they care for you, and ask for dinners delivered to your home by 5 PM the day of chemo and for 7 days afterward. Why by 5 PM?   Because people forget, or run late, and you want to know if you are getting dinner that night or if your husband has to run out pick something up. Ask for disposable containers, you don't want to clean and sort and return eight days of containers now do you? Freeze leftovers, you will use them.

3. Water. Stock up on water, straws, something to make it taste different (good) because you want to drink lots of water, keep your cleansing organs happy, keep the kidney's osmosis gradient happy, wash through that bladder, let there be lots of fluids in your body so anything it wants to flush out will just flush out! I like adding some fresh lemon juice, as I think that makes the kidneys happy too.  I have added POM pomegranate juice, Boathouse juices, pineapple juice, mango juice, black, green, and herb teas (peppermint, ginger). Cooperate with your body.

4. Resting spot. Get a cozy quilt or blanket that you will nap under, on a sofa outside your bedroom. Find the soothing music channel (here it's 434) on your radio or television. My heart rate increases for the week of chemo, so there are times when the soothing music really helps. Get socks for your feet (they get cold, and I have NEVER had cold feet.)

5. First Aid. Make sure you have Bandaids and antibiotic ointment just in case you get a cut, you want to keep it clean. Have a digital thermometer, moisture cream that is for sensitive skin (I got Cetaphil, the night creams I have used for years were stinging), foot cream (keep them happy), and whatever your doctor lets you take for pain (Advil) and digestive issues (stool softeners, stool encouragers) and bioflora (BioKplus 1285). I also have Biotene for mouthwash and eyes, in case they get too dry. Dr. M. doesn't want me taking any supplements other than Calcium, D-3, fiber, and Magnesium. He wants me taking L-Glutamine for 5 days after Chemo, which helps ameliorate side effects to your nervous system. You can get it at Whole Foods or Walgreens.  I felt a bit manic about keeping my skin free of cuts and moisturized, oh well.

6. Get a few comedy movies on hand.  I also have two seasons of Seinfeld episodes. Each night it is so nice to end the evening with Seinfeld, which makes us laugh and laugh. And I KNOW the episode, I KNOW Kramer is going to make a ridiculous face or George will make a stupid comment, but you still laugh. Then we go upstairs, read a devotional, and fall asleep with hope and smiles. Diversionary tactics are okay.  Just switched devotionals. I have read Oswald Chambers, My Utmost for His Highest for years. Now am reading Sarah Young's Jesus Calling.

7. Buy your wig ahead of time, so it is a positive experience. And can be! Ritzy Rags in Orlando is fantastic. Do not get natural hair, too hard to take care of. Get shorter and more colorful (highlights) than your regular hair style. People told me my wig looked better than my normal hair. How ever should I respond to that?

8. I set up acupuncture for two times per week throughout the chemo. It works for me, Dr. M. said it was okay to do during chemo. It has been great letting the acupuncture help my body recuperate after each chemo. Gets all the organs back in balance (especially kidney, liver, heart, digestive system). Helps with nausea. Helps with nerve and muscle pain. Strengthens the immune system and drainage. And even reduces my hot flashes. Worth it everyone. Find a acupuncturist who agrees that chemo and  western medicine is good at some point, and therefore will support you one hundred percent in your choices for doing both the Western chemo and the Eastern acupuncture.

9. Freeze a few dinners, complete ones you can pop in the microwave and you have meat, starch, vegetable. You'll use them at some point, believe me. Right now I have a frozen chicken with rice and  asparagus dinner and a frozen pot roast with barley and peas dinner. Probably for Week #2 of chemo, or if someone forgets to bring dinner the night they signed up for.

10. Clothes. Make sure you have loose fitting pants and t-shirt type tops. I have a port in my arm, not chest. For the week after chemo, I don't want to wear sleeves, I want short sleeves so there isn't any fabric over the port. I get cold so I wear socks and a sweater most days (its summer in Florida). And as for tops, your stomach is bloated for two or three days, so you want loose fitting tops then.

11. Have positive quotes, bible verses, books to inspire you all around. You will want to pick them up and fill your thoughts with them from time to time. And keep all the cards and notes and emails in one basket, so you can pick them up when you need lifting up. I have done this. If I am starting to feel down, I curl up on the sofa, take the cards and emails and letters out of the basket and read them one by one.

12. Set up transportation to and from chemo and to/from doctor's appointments ahead of time.  I couldn't drive home from chemo, and I didn't think it was safe for me to be driving for several days after chemo.

13. Watermelon tastes great to me the week of chemo. And asparagus (natural gentle diuretics). As does lemon sorbet, and lemon squeezed into filtered water (I have a PUR water filter in the refrigerator). When I am not wanting any food (Thursday PM to Saturday PM), I sip chicken broth or eat a few almonds or part of a banana or a baked potato. They work for me.

14. Hand sanitizer. Keep your hands clean, wash them a lot and be strong willed about not getting around germs or bacteria unnecessarily. Don't shake hands with people, don't visit with people who sneeze or sound like they are sick, and don't go out in crowds. Just don't. This is only for a few months of your life, you can live without movies in theaters or flying on airplanes.  Stop giving in. Stop rationalizing. You can.

15. During the Chemo treatment itself. I know you have heard this before, but I will say it again. Be positive and optimistic about chemo. Go to the doctor's office knowing you are a team with the doctor, and that the chemo IS HEALING YOU. Visualize however you want, I seem to do a different one each time. Pacmen or cool running water or light zapping cancer cells. To prevent mouth sores, I was told to eat ice chips during the chemo infusion. To prevent hand or foot CIPN (Chemically induced peripheral neuropathy) you want to keep your feet and hands cold during chemo infusion, so don't wear socks or put your blanket over your feet or hands. The point is to reduce the amount of chemo drugs to your mouth, feet and hands. I have seen photos of patients with ice packs on their feet. My chemo lounge is cold enough, so I didn't need that. I take in my IPAD and listen to a sermon, then relaxing music. I need a sweater in there, and a blanket. Afterward, it feels so good to go outside in the Florida heat, just like a big hug.

16. Nails. I don't want to loose my nails, so I broke my thirty two year habit of having red toenails. No nail polish and no nail polish remover. Stopped that after Chemo #2.  I kept toenails and fingernails short. Brush on orange strengthening oil every day. No pedicures or manicures (germs).

17. Avoid Crowds (GERMS). This sounds obvious to me, but it isn't to everyone I know. Your immune system, along with your whole body, is fighting a war. A World War. Don't you want to help the good guys win? Be gentle on your body. Get enough sleep, get some sort of exercise every day, and stay away from germs. Wipe off the handle of the grocery cart, watch movies on TV, stay off airplanes. What trip is so important that can't wait six months?  As for exercise, there were days, around Chemo #6, where my exercise was one walk around the block. I felt that was okay. That week right after chemo, I was gentle on my body, let it heal.

18. Friends and Family. Rely on others. Friends and family. Go ahead and hang up your Superwoman Cape. Let others plan the holidays, feed the dog, wash the dishes. Go to lunch with who you want to be with. If someone for some reason isn't supportive of you right now, don't spend time with them. This is YOUR time to heal.You will have time to help others later, because you will be healed and healthy and overflowing with energy and love. Just not now.

Bottom line, you can do it! If I can do this, you can do this!

It isn't forever, this is just something that you do to heal the cancer that was found in you. You want the cancer gone for good, so you do what they say, the time tested plan that kills the cancer.
It will work. Many many others have been right where you are, and they are now 5, 10, 15, 20 year survivors.

That will be you, God has promised.

Chemo #1 - Let the Healing Continue!

Dear all my friends,

I walked in the door from a perfect dinner out, carrying a pair of boxing gloves, a gift from two outrageously gracious and dynamite cancer survivors, and their two strong, compassionate and loving caregiver husbands. Because this is a fight that will be WON!

I LOVE IT!

I've gotten a postcard from a friend visiting Vietnam, that tells of their custom of breaking the rear view mirrors on a motorcycle, because you don't want to see the past that is behind you, you MOVE ON...

We had movie night for my birthday, with Mack, Tray, Corey, and T coordinating to bring in a pizza, eat popcorn and chocolate, and watch a movie on DVD (Up in the Air.)  I've gotten a stack of Johnny Depp movies in the mail (evidently Mike has a cousin who swears this brings any women out of a blue day.)

Your cards (one from Prague) and e-mails are the best. I keep them in my willow basket, and read them when I need them. I ADORE the orchids, each blossom is someone looking at me with smiles. A book of quotes (HA! Who guessed I liked quotes!) Dr. Love's Breast Book (I understand that is her real name.) An assortment of cheeses and crackers, a pillow to cuddle at chemo, a candle of fresh scent. A journal that asks you, what gave you comfort and joy today. Phone calls and visits, especially with cancer survivors. I love to see your energy and positiveness. And voice messages and texts from all friends, offering to do anything, and that you are on my side. You all are so cool!

I'm getting ready for Chemo #1 tomorrow, Tuesday, at 1:45 PM. Exercise this morning, brief staff meeting at the baseball office, lunch full of me asking two friends who know from experience all the details I wanted to hear, acupuncture, prayer for healing and thanking for healing, that which we see and that which we will see, got a pedicure, then dinner out. And drinking water, water, water...

Some thoughts follow, and if you are bored by now, just stop. That's fine, I'll never know!

Thought number 1: You know, the phrase "God doesn't ever give you more than you can handle" isn't totally correct. I think it should read, "God doesn't ever give you more than HE can handle, through you." . Makes so much more sense to me. Have to keep in close touch with Him, which is the verse He gave me in the parking lot of the Radiologist's office two months ago - Be still and know that I am GOD... Psalm 46.

Thought number 2: Mike and I thank you so much for your prayers, for me, and for him. Mike as you all know finished treatment for lymphoma the day before my biopsy. He is doing great. So while you are praying for my continued healing, could you add Mike too. Healing together, a two-for-one special!

Thought number 3: If you want some suggestions for prayer, here some are:

- thank Jesus for all his promises of healing, and that He fulfills His promises, that is just what He does

- ask Jesus to continue to heal my body completely of cancer. and Mike's too. thank Him for the healing we see and the healing we will be seeing

- that Jesus help me to be consistently concrete in believing I am healed. (I think of Hebrews' Faith is the substance of things hoped for. Help my faith increase and grow stronger. )

- ask that the chemo Tuesday scurry around and zap up every cell that shouldn't be there. As Jesus' blood has washed away all our stains (that was D's thought, I like it)

- Ask that Jesus protect the healthy cells. And the nausea be minimal if at all.

- may I see any side effect as proof I am in the process of healing

- May Jesus guide the nurses and doctors hands so all the procedures do what they should, and they make correct decisions

- May I feel God's presence as I sit getting chemo, that His loving arms will be holding me, and I will lay back and know He is totally in control and I am safe

- May Mike's and my every word and action be witnesses to the peace that passes all understanding, We will not be afraid, for through Jesus we are more than conquerors.

- That if we experience any fear, we lift it up to Jesus, and He will take it away and replace it with His presence

- May we thank Jesus in this, Praise Him in this Storm (from Casting Crowns not my phrase, but its a good one)

- May we accept joy and comfort from those around us

I am trying my hardest to stay upbeat. I do feel pretty upbeat. A little afraid, which I think is normal. If I weren't a little afraid I would think I were totally devoid of a brain. Overall, I am not feeling much, which is even better. Still numb to the dimensions of the tasks ahead. I will take it as it comes.

Thank you for your prayers.

LOVE YA, sara

Be still, and know that I am God. Psalm 46:10