Cycle 4 is scheduled to start tomorrow! My new chemo day is Thursday.
Feb. 27: Long chemo (3.5 hours)
March 6: Short chemo (1.5 hours)
March 13: off
Cycle 4 is scheduled to start tomorrow! My new chemo day is Thursday.
Feb. 27: Long chemo (3.5 hours)
March 6: Short chemo (1.5 hours)
March 13: off
From my last post: “… But I want that chemo to kill more of the cancer … and I need to get in to see my oncologist before they will schedule me for more. I was feeling a bit frustrated that the long week-end delayed my regularly scheduled Tuesday chemo date, and now I’m chomping at the bit to get back on track! (… and desperately trying to not succumb to the control-freak part of my nature!)” Note: I was initially expecting to start my fourth cycle of chemo on February 18th, but I’m still waiting.
Here’s a question I’m pondering in the middle of the night here: Does lying awake in bed developing strategic plans for advocating for myself to get a chemo appointment *necessarily* define me as a control-freak?
I left multiple messages with the phone systems in both my oncologist’s office and chemotherapy booking on Monday, then again on Tuesday, and I’m feeling frustrated that no one has returned any of my calls. Not even a “Sorry you got the wrong number,” reply or, “We’re really busy but we’re working on it because we know this is important to you,” or, “We’ve got your messages, and if you’d please stop calling we’d have time to actually book you an appointment!” Nothing. So when I woke up with my mind racing, I eventually decided to come downstairs in the middle of the night and leave more messages. Sometimes action helps. If I don’t hear back by 9:30 am, I plan to go in person to the chemo scheduling office and see if I can talk to an actual person. If that doesn’t work, we plan to contact some of the people we know who can help us navigate the system.
Sometimes action helps, but my mind is still racing. Those of you who think I’m so full of faith, remember this moment! There’s a great verse in Philippians (4:6,7) which is much easier to memorize than to consistently live: Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. I was praying on Monday and I felt peace. I was praying on Tuesday and I felt peace. Here and now, in the middle of the night, my mind is racing and although I’m trying to pray, I’m not really feeling the peace!
Time for a new strategic planning session! Warm milk. A couple of Psalms. Asking God to help schedule the chemo (again), find things to be thankful for as I ask. I go to the cupboard for a mug, and the one right in front is a gift from a former student leader who was visiting town this summer. It reads, “Faith is not knowing what the future holds but knowing who holds the future”. (Insert thankful smilie emoticon here!) I’m now sipping from it – good plan! Now I’ve read Psalm 34 (one of my many favourites) I will bless the LORD at all times; his praise shall continually be in my mouth. … I sought the LORD, and he answered me, and delivered me from all my fears. … good Psalm, good plan. As I read it, I could feel my fear and stress starting to melt and my world getting a bit bigger. There may possibly be more in the universe than my next chemo. I’m sorry for my narrow-minded control-freaking focus on that one thing. I thank God for many of the kindnesses of family, friends, acquaintances and strangers, and I thank Him for many of his good gifts to us. This is helping. This is helping me to remember what is true and real. “…though we stumble, we shall not fall headlong, for the LORD holds us by the hand.” (Psalm 37:24) I thank God that I had peace and trust earlier that He
was is ultimately in charge of my chemo schedule and would will take care of me. I go back and edit that last sentence, thanking God again! I edit again to, “… and you are taking care of me.” Psalm 38:9 & 22 read, “O Lord, all my longing is known to you; my sighing is not hidden from you. Make haste to help me, O Lord, my salvation.” Psalm 40:17 says, “As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God.” I keep reading, and so many verses jump off the pages at me. I should not be surprised that this happens: it has happened so many times before. I am thankful. Not fully filled with peace, but I think I’ll keep reading and praying and sipping … my “cup” doesn’t feel like it’s overflowing yet, but the peace is growing, my mind is slowing down, and I think it’s nearly time to brush my teeth and head back to bed …
… and if I don’t hear back by
9:30 9:00 am, I plan to go in person to the chemotherapy booking office at the hospital and try to talk with an actual person!
Chemotherapy has its privileges: you get to carry a special card. Not a gold card, but a red and white “fever card” which reminds the patient to “seek immediate medical attention at the nearest hospital” if one’s temperature is at or above 38 degrees C (100.4 F). “This may be a cancer EMERGENCY”, it declares in bold letters.
We get regular reminders that we are to check our temperature daily, and I usually do it in the evening. Friday morning, though, I awoke feeling quite wretched, reached for the thermometer and discovered my temperature was 38.1 … wishing it was 37.9 didn’t change the reading!
So I went downstairs to tell Jono (my husband), who reminded me that the car was at the garage for repairs. By the time I’d jumped in the shower, dressed and grabbed my bag (which was already packed since I was scheduled to spend the afternoon having chemo), a lovely neighbour was arriving to drive me to the hospital. (Jono picked up the car and met me there later.)
I didn’t have to wait long before they brought me into my own special isolation room, with a warning sign posted on the door. I didn’t even know they had these private rooms in emerg – kind of like being in a hotel with my own attached powder room! Few people were allowed to enter, and they had to be dressed up with special masks etc. to protect me from further infection.
“Febrile Neutropenia” they call it. I think it means that the chemo significantly affects one’s ability to fight any infection. At certain times of my chemo cycles I have virtually no white blood cells (nor red ones nor platelets for that matter). The timing of this fever couldn’t really have been better for me – praise God – because my blood test numbers were good and I was due to have chemo that day.
They ran a bunch of tests: more chest x-rays, urine tests, blood tests (three pokes and two new bruises), etc. but couldn’t find any particular infection. I slept most of the day while they loaded me up with fluids and two different IV antibiotics. They considered admitting me, but I was so thankful they let me go home around dinner time, with a prescription for yet another antibiotic … covering all the bases!
I napped on the couch all evening, then a quick dinner and straight off to bed where I slept really well. Amazingly well, in fact! I slept EIGHT HOURS STRAIGHT, which I hadn’t done for six months! Normally I awake about every two to three hours – generally because I’m uncomfortable. Since August, I can only lie on my right side or else I cough. I could not believe that I woke up at 9:00 am with the glorious sun shining so high in the sky!!
Saturday I felt so much better. Sunday better still. This morning it occurs to me that the fact that no one has pumped my body full of toxic chemotherapy chemicals since February 4th probably has something to do with me feeling stronger and more energetic.
… But I want that chemo to kill more of the cancer … and I need to get in to see my oncologist before they will schedule me for more. I was feeling a bit frustrated that the long week-end delayed my regularly scheduled Tuesday chemo date, and now I’m chomping at the bit to get back on track! (… and desperately trying to not succumb to the control-freak part of my nature!)
I’m also very aware that so many of you are praying powerfully for me and I can’t tell you how much that means to our family. I feel your prayers and the presence of God powerfully, and I know that your prayers are making a huge difference. Thank you!
I’ve been reading the gospel of Matthew lately, and healing was such a big part of Jesus’ ministry. Chapter 8 tells how he healed a leper, which was the big “incurable” disease of the day. The leper knelt before Jesus saying, “Lord, if you choose, you can make me clean.” Jesus stretched out his hand and touched him (a cultural / religious / medical no-no of the time), saying, “I do choose. Be made clean!” Immediately his leprosy was cleansed. Then Jesus heals a Roman Centurion’s servant, commending the Roman for his faith (we are all welcomed – praise God!). Then he heals many at Peter’s house, including Peter’s mother-in-law. Chapter 9 describes Jesus healing a paralyzed man when he saw the faith of his friends, then a woman who had been suffering from bleeding for 12 years, a little 12 year old girl who had died, two blind men, a mute demoniac, and the list goes on…
What I find so exciting is that Jesus goes to all the cities and villages. He teaches, he proclaims the good news of the kingdom, he cures every disease and every sickness, he has compassion on the crowds because they were like sheep without a shepherd … and he says to his disciples,
The harvest is plentiful, but the labourers are few; therefore ask the Lord of the harvest to send out labourers into his harvest.
Jesus then summons his twelve disciples, gives them authority, and he sends them out to do the same things he has been doing … good news!
You, through your prayers, are written into this story, sent by Jesus to do his good work of love and compassion. Thank you for being labourers in his harvest, and for the difference it is making for us.
Please do keep praying – not only for me, but also for my family. Being a caregiver / supporter / loved one is hard work! My husband is tired; my kids can be scared / grumpy / angry / etc. We all welcome your prayers.
We also greatly appreciate all the warm thoughts, cards, help and gifts we are receiving. It is so encouraging knowing that so many people are standing with us and supporting us in so many ways, and believe me: this all makes a HUGE difference to us. We can not tell you how much it means to us. THANK YOU!
We cancer patients are blessed with a whole team to help care for us, including a lovely dietician who provided me with a list of “super foods”, and even a bunch of delicious seaweed recipes when I told her the only time I’ve ever cooked with seaweed was to occasionally make sushi! It’s been a fun adventure searching for and trying new things! We’re enjoying new shapes and flavours of mushrooms, and taking the “rainbow” of food colours concept to whole new levels!
I’ve read a bit from cancer dieticians, and the potential health benefits of a variety of foods seem amazing! I am grateful for this information, and the opportunity to eat healthier!
Basically, I eat LOADS of veggies and fruit every day (sometimes in juice / smoothy form), along with three to four times as much protein as I used to eat (since I’m on chemo).
Here (in case you’re interested) is a list of “super foods” I posted on the side of the fridge to help keep me on track …
Cabbage Family (Crucifers): cabbage, broccoli, cauliflower, kale, curly kale, brussels sprouts, collard greens, watercress, turnip
Allium family: garlic, onions, leeks, shallots, chives
Tomatoes (especially cooked) – seems beneficial against prostate cancer, not so applicable to me personally!
Mushrooms: shitake, enokitake, boletes, cremini, maitake, Portobello
Seaweed: kombu, wakame, nori
Berries: wild blueberries, cranberries, blackberries, raspberries, strawberries, pomegranate, grapes
Citrus fruits & juices
Probiotics: yogurt (especially with lactobacilli & bifidobacteria), kefir (eat with prebiotics such as: onion, garlic, asparagus, banana, wheat.)
Meat & Alternatives:
Fatty fish: salmon, sardines, herring, rainbow trout, Atlantic mackerel, arctic char
Soy, beans, lentils
Nuts / Seeds: Ground flax seed, wheat germ, ground walnuts, almonds, brazil nuts
Oils: Olive, Canola, Flaxseed
Spices & herbs: turmeric, black pepper, ginger, mint, thyme, parsley, coriander, celery …
Tea: Japanese green
Red wine (I’m not drinking while on chemo, plus red wine gives me migraines)
Dark chocolate (70% +)
Cycle 4: My next long chemo is now scheduled for this Friday afternoon. We tried to reschedule it for earlier this week, and may get in tomorrow if there’s a cancellation, but probably it will be Friday.
Please pray it goes well, and energy for the week-end with the kids!
I have not heard any details beyond this yet …
1) Not only did I get to go to a “Look Good Feel Better” workshop (for cancer patients), but I got to make a joke which caused the entire room to erupt in laughter. To bring these women such joy brought me immense joy! Wonderful volunteers and program!
2) My oncologist called me a “superstar” because I’m doing so well on the chemo and my blood work is excellent! I think it definitely has a lot to do with all the healthy food, warm thoughts and prayers people are sending – thank you!!
3) Hanging with my family this evening …
Back in December when I was about to share our sad and surprising news with a good friend via long-distance call, I had no idea that she would also be telling me of her own family’s challenging news. While her situation is vastly different from mine, we both felt surprised and confused.
It struck me powerfully that we both struggled in our own ways to hope for ourselves, but we also both felt tremendous hope for the other in her situation. I could clearly see good ways forward for my friend, but was needing to “piggyback” on the faith and hope of friends for me.
My friend sent me this little statue soon after our conversation. In the note, she included a few verses from the Bible, including this prayer that St. Paul prayed almost two thousand years ago (and many people have prayed since): May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. (Romans 15) I wrote it on a sticky note which I stuck on the side of the fridge to remind me of her prayer for me, and to remind me to keep praying it for myself. “The God of hope”, “all joy and peace in believing”, “abounding in hope” are such beautiful and full-bodied images. I know many people have been praying for me, and I’m thankful these prayers are being answered!
When I saw the statue, I immediately thought of a line from the song (that we used to occasionally sing in church) below: I will hold the Christ-light for you… and I realized with deep gratitude that is precisely what a number of my friends were doing for me, with their prayers, words and actions.
The Servant Song by Richard Gillard
1. Brother, sister, let me serve you; let me be as Christ to you
Pray that I might have the grace to let you be my servant too.
2. We are pilgrims on a journey, we’re together on the road
We are here to help each other walk the mile and bear the load.
3. I will hold the Christ-light for you, in the night-time of your fear.
I will hold my hand out to you, speak the peace you long to hear.
4. I will weep when you are weeping; when you laugh, I’ll laugh with you.
I will share your joy and sorrow, till we’ve seen this journey through.
5. When we sing to God in heaven, we will find such harmony;
Born of all we’ve known together of Christ’s love and agony.
6. Repeat v. 1, singing ‘Sister, brother…’
Copyright 1977 Scripture in Song. Used by permission.
There are times when we need people to lend a hand to help us carry our load. Then there are times when we need people to simply carry it for us. That’s how I felt early on with my diagnosis. I needed people to hope for me and to help me to hope, because my hope was flickering dimly at that time. I needed people to pray for me, because praying was very hard at that time. My prayers were often brief heart-felt cries, pleas, groans, wordless yearnings, tears. I took comfort in the (sometimes brutally) honest prayers recorded in the Bible (e.g. Jeremiah, the Psalms). Knowing that friends were praying: not just for me, but actually on my behalf, made such a difference.
Here are a few lines from a Bruce Cockburn song that also speaks to the support of friends. How important it is to have friends who lovingly speak truth to us: who help us remember what is real and cling to what is true …
I’ve been scraping little shavings off my ration of light
And I’ve formed it into a ball, and each time I pack a bit more onto it
I make a bowl of my hands and I scoop it from its secret cache
Under a loose board in the floor
And I blow across it and I send it to you
Against those moments when
The darkness blows under your door
Isn’t that what friends are for?
– from Breakfast in New Orleans, Dinner in Timbuktu (1999)
A number of friends have helped bolster my hope in various ways. For this I am so grateful. My desire is that I will travel this journey through the valley not just with gratitude, but also with hopeful realism. Hope is a significant ingredient I’ve been reflecting on quite a bit lately, and may ramble about more later!