The past few weeks have produced cause for questions and naturally some accompanying anxiety. Easter Saturday followed my last blog and was an expected ‘low day’ since it was chemo week (4/15) but more surprising was my discovering that the next day I felt unwell enough to need to leave the Easter service half-way through. That was a first; I’ve never had to leave anything. I rested and went to Karen’s for brunch which was a treat and helped to raise my spirits. I rallied enough to once again make the trip to Blue Ridge Summit the next weekend. Two days later (4/29) I felt well enough to attempt pickleball after many weeks of absence! Thoroughly enjoyed it and was the recipient of much understanding. Wasn’t as winded as I expected either. A super discovery!! Then came Wednesday, the next day, when I awoke too dizzy to walk around the bed without wobbling. Had a few semi-falls in the bathroom as I veered from door to sink and back to bedroom. The whole day was spent in a state of vertigo, lightheadedness, and weakness….staggering around and …. worrying. The 4mm. lesion on my cerebellum is the part of the brain responsible for balance ! Was this a sign that I had moved from stability to activity? That was the day I was to go to Shalem and review the online retreat with colleagues; obviously I cancelled. That night I went to sleep hoping I wouldn’t waken with more of same! Fortunately I didn’t. And on Thursday it was a gorgeous day and the Shalem folk came to me. I had energy and could think a bit clearer! By Saturday (5/3) I was ready for more pickleball so gave it another try – successfully and again with less breathlessness. 🙂 My major difficulties have been with increasing mental confusion (forgetfulness and thoughtlessness and word loss), visual difficulties that halt reading or computer work, and the annoying constant nose dripping. Wondering if all that was going on would preclude me (by my choice or the doctor’s) from having chemo on 5/6, I shared my personal information with the office; was told to come in early for consultation but to come prepared for chemo. So that meant taking all the prep meds and getting wired up at night.
Consultation results: Since my staggering day episode was in the middle of the chemo cycle (“nadir”) it is possible that I was dehydrated and that could have brought forth such an outcome. That is when there is a low blood count and I might be predisposed toward lightheadedness. Also, if the cause were the lesion it would most likely be occurring more frequently. No side effects from the chemical taxotere show anything like I had. Vision maybe, and chemo brain definitely. I had my 17th infusion on Tuesday (5/6) and have appointments on the next “would be chemo day” (5/20) for a PET-CT scan in a.m. and an MRI of the brain in the p.m. Then on 5/22 I will meet with Dr. Heyer to review the results and see where we go from there. Hopefully there will be nothing dire observed and stability will remain.
Immediately after that I have a bit of time off – don’t know what’s next because I’ve had the maximum number of treatments for 3 drugs. Dr. Heyer says he still has some things up his sleeve though. 🙂 Primarily we will “watch closely.”
Two days later (Saturday 5/24) I will be flying to MA to visit David’s family, returning Sunday, 6/1 and pick up with my Xgeva injection which has been postponed. I am more than eager to visit them since it’s been 6 months. It will be a bit cooler than I’d like but I’ll be avoiding the increasing heat and humidity here. And David tantalized me by saying, if you come up sooner …”There’s this quintessentially small-town America 2-block parade,” and you could be here over Memorial Day. Ashfield is a charming town, praised by Barbara Kingsolver in her book Animal, Vegetable, Miracle.
And so I moved my projected dates up a week or two. That will be nice in that it will space the time between visits when Lily and Naomi will be coming to Virginia the end of July/beginning of August for two weeks. We’ll have some time at the Summit house and with Karen’s family (prior to Kate’s departure for UVA as a freshman!). The girls will be sharing time with Laura’s family too. I am very excited about their opportunity then to attend a week’s free camp in Maine for children who have lost a parent. It is a program called “Circle of Tapawingo” and you can Google their video showing the kind of sharing and fellowship that comes with common backgrounds, being able to be honest and open up to feelings. They will also be able to return each year. Quite a camp! This is something that they will both profit from, I feel sure. It’s been almost six years since Laura died.
I apologize to all of you whose calls I’ve missed by being off on some jaunt/errand/appointment or maybe out-like-a-light in the lazy boy! Or dazed from next-to-no-sleep the first three days of chemo when the anti-nausea drug causes me to be wired till three or four in the morning! Also, I have truly been in over my head with things to do that normally seem ordinary, but my speed is slower than slow. I continue to be disturbed by the amount of time it takes for me to comprehend something or to remember it. I have missed activities that I wanted to attend or paid good money for – due to memory. Two things were fortunately a week ahead of what I’d jotted down! but one was a day late which grieved me: the Chef’s Dinner this past week…. I just wasn’t in sync with any of my gadgets or paper and forgot. I have now dug out my magnetic calendar and put it on the fridge door, compiling all that comes from the four sources that are never quite synched! Now I can see my schedule in front of me! Yes, I forget to look; I’ve relied too much on a good memory.
On the positive side – for which I am MOST grateful, I have had more energy to tackle things around here (organizing and rearranging) as well as the Spirit Windows editing which I’ve promised to be completed by Memorial Day! I find myself unable to function efficiently when things are turned upside down among my surroundings, so this has been a joy to experience. Shalem will be pleased as they are hoping to bring it out in the fall.
The online retreat day through Shalem was received quite well and the review convinced them to offer it again – heads up! on Friday, June 4 through Sunday, June 6. So if you missed it last month, here is another chance! You can take as much or little time with it as you like and organize it for any part of those three days. (There are 4 parts.) Access is through www.shalem.org – go to Store for “Holy Interruptions.”
Hummingbirds! I have waited and waited for them but my ‘nectar’ turned cloudy and was refused. Put out fresh this week and on Monday afternoon 2 birds finally found it! But – it has turned cloudy again and I’ve seen no more. 🙁 Why? sugar and water 1 to 4, same as always. BUT – my little sister from college days was here from CO and is an expert on – bee balm! She sent me three plants which are thriving out on the patio and should bloom in bright red e’er long, I hope, and bring back those little hummers! I have no green thumb but am trying not to forget the water – for them and for me!
As you might imagine the past year has found me drawn to many books that deal with spirituality, life, death, love, suffering, blessing, and so on. First I will share with you a blessing from John O’Donohue, a favorite who died way too soon but who left a legacy of words for us all.
Blessed be the longing that brought you here
And quickens your soul with wonder.
May you have the courage to listen to the voice of desire
That disturbs you when you have settled for something safe.
May you have the wisdom to enter generously into your own unease
To discover the new direction your longing wants you to take.
May the forms of your belonging – in love, creativity, and friendship –
Be equal to the grandeur and the call of your soul.
May the one you long for long for you.
May your dreams gradually reveal the destination of your desire.
May secret Providence guide your thought and nurture your feeling.
May your mind inhabit your life with the sureness with which
your body inhabits the world.
May your heart never be haunted by ghost-structures of old damage.
May you come to accept your longing as divine urgency.
May you know the urgency with which God longs for you.
– John O’Donohue
Following is an entry from today’s daily meditations by Richard Rohr that moved me greatly. It may not suit your personal beliefs but he has been an incredible inspiration to me and to many of my friends for his fresh way of explaining old phrases and words that can be found troubling or unclear. His willingness to be vulnerable and honest and totally accepting of all is such a gift to me.
No Exceptions
I shall try to post another entry soon after any news from the scan and MRI. For now, please be with me in the mental confusion and fatigue of the coming 10-12 days when hopefully there will be no repeat of last month’s ‘episodic day.’ Love to all….
Ann,
Thanks for the sharing. John O’Donohue is a favorite of mine as well.
Healing Prayers.
Chris
Dearest one,
Thank you for your dedicated updates. I use them as an inspiration for my cousin in Germany (age 55) who was diagnosed last August with lung cancer. Your posts are hopeful but realistic, in the moment but planning for future events, inspirational and practical.
May you dwell in love and lightness of being this day,
Regina
The hummingbirds have not left – they’re just checking things out and finding the right place to be….and you’re definitely the right place to be!
God guide you as you make decisions…God’s grace be with you…and all our love as well!
Billie & Ed
Really glad to catch up w/your posts. Sounds like you’ve been up/down, and you carry on and on and on…
Just got home from KY last night to witness my grandson Steven (Gary’s son) graduate from college w/High Distinction. It was bittersweet since I so wished Gary could have been there too… I spent Mother’s Day w/my girls and went to the church where I used to be the Pastor’s wife. Jack, my ex, joined us for a celebration for Steven (his wife was in NY for Mother’s Day). Felt nice to have my family together w/just us…
Our retreat is this weekend, so am gearing up for that in the next couple of days.
Keeping you in my prayers…
“All is well, all is well, and all is well…” 🙂
Luv, Jan
My Dear Ann, So many ups and downs……so happy to hear you are going to David’s soon. I know how much you love to be there. Sending my love and prayers as always and thank you for your posts!