A few steps forward, a few steps backward …

HibiscusIn spite of the good work of my physiotherapist and all the stretches and exercises I’ve been doing, my shoulder is only a bit better. My physio said it would likely take six weeks, and I’m trying to be patient and disciplined!

I’m feeling more energetic at times, and at other times completely exhausted. I can’t find any patterns (apart from the fact I tend to feel more fatigue in the afternoons & evenings), so making plans is challenging and sometimes discouraging. On the upside, my 8yo and I enjoyed a long stroll together yesterday evening, and I felt up for another walk this morning. This is encouraging!

duck watchingIMG_0272signs of fall

I’ve now got this itchy rash on my arms & legs – mostly where my skin was tanned in the summer. My oncologist doesn’t know what causes it: possibly a combination of the meds and something else. A friend suggested putting aloe vera on it to help soothe the itchiness, so I tried it and it seems to make a big difference¬†for a few hours. That made falling asleep last night easier than it’s been in a while!

Having a sore shoulder and being itchy isn’t so bad compared with not being able to breathe well. I’m trying to keep things in perspective. ūüôā

Here’s an encouraging note:pollinators at work

Every three weeks I have two days with¬†clinical trial appointments. Blood is drawn from my arm each of those days. Left arm on Mondays, right arm on Tuesdays. The Monday blood is sent to a local lab to make sure I’m healthy enough to continue treatment. The Tuesday blood marks the beginning of the next cycle of treatment, and is sent farther away to a lab for the clinical trial data.

Last month I started thinking about the process, and wondering why I had to have blood removed two days in a row. Couldn’t the procedure be changed so that I only had to be poked once every three weeks? (I also get poked whenever I have a CT scan, but that seems unavoidable.) As I thought it through, I couldn’t see any reason that would require blood being removed two different days, except that’s the way the trial was set up. I was open to the likelihood¬†that I was missing something, since I have no background in medicine or pharmacology.

So, at my appointment last month, I raised the question with my oncologist and clinical trial administrator. They could understand my desire to avoid being unnecessarily poked with a needle, and promised to look into it.

When I received word of my appointments booked for this week, something was different! I went in to the clinical trial unit at the hospital, and they poked me once and filled up all the vials that were needed: two for the local lab and a bunch more to be sent away for the clinical trial lab. Only one poke this week! Yay! Then I went to see my oncologist, and he told me that several hours of discussion went into this decision. I’m so thankful! … and I hope that many future clinical trial patients will¬†benefit from my raising the issue and the people in authority investing¬†those hours.

Sometimes we feel powerless. From what I’ve observed, cancer patients tend¬†to feel this quite a lot. Going though tests and treatments is really hard, and even before the diagnosis much of our power is stripped from us. It’s scary and stressful and painful and unpleasant.

I’m glad I was¬†able¬†to think about the blood work process, and felt empowered to ask the question. I’m thankful for those¬†who were open to considering the possibility and willing to invest hours in wrestling with this question. I’m also grateful for the generous folks in the clinical trial section who now graciously welcome me there two days in a row instead of one. (I still have to have the other tests on the second day.) I know that makes extra work for them. Everyone is so busy. There are too many cancer patients.

Earlier this week I was thinking it would be nice to bake some muffins for our family, but I was too tired. Then a friend arrived at our door with homemade muffins she had baked for us! The next day another friend came with some more! Now we have two types of delicious muffins. We are so abundantly blessed!

Last week an envelope containing two gift cards for the grocery store arrived in our mailbox! Thank you, anonymous friend!

So that’s some of my news! … and I will also add that on my walk today I ran into three people who hadn’t seen me in a while (I haven’t been out and about much in the past two years), and they all commented on how good I’m looking. At least one didn’t recognize me at first. They all love my long curly dark hair, and one even said I look twenty years younger!

I’m thankful for these things and for so much more!

neighbourhood garden Fall flowers beauty

Update from the middle of the night

From my last post:¬† “‚Ķ But I want that chemo to kill more of the cancer ‚Ķ 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‚Äôm chomping at the bit to get back on track! (‚Ķ 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!

Beautiful delivery Tues. afternoon!