Update

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Hiking it out

I was so tired last Friday that I kept falling asleep during Reiki, which I don’t usually do. I think I was carrying around more stress about that CT scan than I’d hoped I would.

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On Saturday, Cliff and I celebrated the good CT scan results by going on a beautiful but tough (for me) hike. It was only a couple of miles, but we gained some good altitude. I took many rests, and Cliff was patient as always. He steadied me a couple of times when my balance wavered.

 

 

 

 

 

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There was a lovely stream by our path the entire hike upward. It kept crossing our trail. So nice to hear the gurgling as we hiked!

I told a friend about our hike, and she got us trekking poles from Sam’s Club today. I can’t wait to try them out!

Cliff and I saw my Univ of Colo oncologist this morning. Very good appt; he is so thorough and clear with his explanations. And it’s such a relief to have no evidence of cancer.

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Hurray — I already have the CT scan result, and it is all clear — no evidence of disease!

Bless that hospital radiology dept and my oncologist for getting me those results so quickly. It’s difficult to wait.

I kept reminding myself to remain quiet, to dwell in peace. But it’s like trying to keep a lid still over a boiling pot. (Sorry, that’s the only metaphor, lame as it is, that I can think of right now.) I would rather know what that test shows, and the sooner the better.

So I’m very happy. I’m off to Reiki now and Gail, my dear practitioner. Bliss!

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CT eve

It’s been a good week, although I’ve needed to keep reminding myself to breathe and be peaceful. My CT scan is tomorrow morning. Hopefully, I’ll know the results on Friday afternoon.

Because I felt better about the scan, I was able to enjoy a hike on Saturday with Cliff, and we went for a bike ride on Sunday. When I do those kinds of things, I’m exhausted for the rest of the day. But it’s so wonderful to exercise outside that it’s worth it.

I’ve been doing rough sketches this past week. I took a long fireplace-style matchstick and dipped it in ink and drew with it. It’s hard to control but certainly loosens you up! I sat on a blanket on the lawn in the shade, nestled the ink bottle in among the grass blades, and drew. Nice way to spend part of the afternoon.

The cat is asleep on my forearms as I type, so I’ll quit now, as this is getting uncomfortable (although the cat is snoozing quite comfortably — his head bobs up and down as I type).

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Celebration and a decision

I just had my ninth round of chemo . . . ¾ done! After consulting both oncologists, I decided to drop the chemo drug that is causing most of my neuropathy and give my body a rest. The oncologists were concerned about permanent nerve damage in my hands, feet, and mouth.

I consulted some kindly people on a colon cancer forum, and their input and the oncologists’ opinions helped me make this decision. It was tough, actually. It’s hard to know all the implications, and even the doctors don’t know it all. There’s so much uncharted territory yet.

I have very happy to have received an “all clear” from the PET/CT scan radiologist. I’m aware that the scanner only sees activity that is 3mm or larger. It doesn’t see the tiny stuff. So I really don’t know what remains inside me.

Still, I am celebrating the scan results. They could have been so much different. I take the good when it comes and bask in it as long as I can!

During the weekend, I was down with a chemo-related migraine that I couldn’t seem to control with pain meds. I am predictably getting a migraine during the second week of chemo, usually on the weekend. So I ride it out.

I had a long day yesterday (but the headache was gone!) — getting chemo for 4 hours and seeing both oncologists (one is far away) takes a while. I left the house at 8am and didn’t return until 5pm – a normal workday for most people but exhausting for me.

Fortunately, my very kind son drove me to and from the distant appointment, and I was so grateful in my weary state not to have to gear myself up and concentrate on commuter traffic.

Today I feel so good and peaceful and rested, even though I’m still wearing the chemo unit which is dispensing a drug into my body 24/7.

All the same, this is a rare day, when I feel so serene during chemo. I will get outside and walk the dog and admire the autumn leaves, which is always refreshing.

Jesse, my walking buddy

Jesse, my walking buddy

Evening notes

I just read my last post, and it sounds like I am reeling uncontrollably around the house, but I am not. Although the moments I wrote about all happened and continue to happen, they don’t occur on the same day (or else it might be a good day to go back to bed).

Well, the hair drifting to the floor is sort of a constant process.

Monday, when I wrote it, was a very bad day. I felt like I could hardly move. But Tuesday and today have been so much better. I’ve gotten errands done and am exploring pen and ink in the studio. I can’t seem to get the hang of pen and ink, but it’s fun anyway and I enter sort of a zen-like zone when I’m using the pen or the water brush.

. . . except earlier today when both new nib-holders broke and one of the nibs fell out in the inky wash water and I unfortunately poured both the dark water and the brand new nib down the toilet. A comedy of errors. I went back to the little art store, and the clerk said, “You just bought these yesterday.”

Yes. Well. The hapless artist strikes again.

Plus my 23-year-old son was there as a witness to see the nib go down the toilet. He offered to reach in and try to locate and retrieve the nib in the toilet water, which was opaque with black ink. Ew . . . even though the toilet was clean. Anyway, he was sweet to offer, but I declined. Everything had broken or disappeared at once, and I was afraid something else might happen, like his cell phone dropping in the water or something.

I have a PET/CT scan tomorrow and see both oncologists (the conservative one and the one who prefers aggressive treatment) next week. I know they will both be concerned about the worsening neuropathy (numbness and needle-like sensations) in my hands, feet, and mouth. We’ll see what news the PET/CT brings. I have chemo on Monday and get disconnected from the chemo pump the day before Thanksgiving.

The kids have offered to make Thanksgiving dinner and I am going to take them up on it, as I will probably not feel so good (and unfortunately may not be able to taste much either so soon after chemo). Cliff will help with the dinner too, as he always does. Love this family.

pen and ink attempt, day one

pen and ink attempt, day 1

Seven rounds down

What a week it’s been. The history-making presidential election is over, and whether or not you liked the outcome, ya gotta admit it’s great to have all those nasty commercials off the air.

As for me, I’ve done with seven rounds of chemo, and my eighth will begin in three days.

The side effects are more persistent now; some of them last the entire two-week round. I guess the chemo is building up in my system. I still try to walk most days – 2 ¼ miles yesterday and a mile today – but some days I am too tired to get myself out the door.

Art is a good escape for me, although the weekly lesson (which only lasts an hour) wears me completely out because it requires undivided attention and focus, and my attention span is very short now.

My vision has been affected by the chemo, so I made an eye appointment for Wednesday. I will probably need to get a cheap (relatively speaking) pair of interim glasses to get me through the rest of chemo and the months afterwards as my body tries to return to normal.

Cliff and both kids are out of town this weekend. But they keep calling me. My balance isn’t so good these days, and I think they want to make sure I’m not lying in a heap at the bottom of the stairs! Not to worry; I try to be careful.

Midway

I’m halfway through chemo – six rounds done, six to go. I should be wrapping chemo up around January 2009.

In the meantime, I am prepping today for a colonoscopy tomorrow. The oncologist told me just because we’ve taken care of one malignant site doesn’t mean there might not be more in there. So tomorrow morning my surgeon will take a good look at my insides again.

I am truly grateful for good health care and for alert physicians. But having a colonoscopy during chemo is a little tough. I am feeling the cumulative effects of chemo now – some loss of balance, shakiness, fatigue, and the ever-present neuropathy in hands and mouth. Today I am fasting and will be drinking the vat of liquid this evening for internal cleansing, which will leave me even shakier.

Oh, and a mammogram on Friday. I know these tests all vitally important. That’s why I’m having them done.

Still . . . all I want to do is curl up in bed and rest, so I will do that this afternoon. Weariness and gratitude coexist here.

Outside my window, the temperature is dropping and the wind is up. Leaves are sailing off the trees like snow.

And now thunder is booming. Lovely.

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The new nausea meds have helped a great deal. I am keeping food down and gaining some much-needed weight back. I’m still going in for hydration because I can’t keep liquids down yet. I try to get liquids in me through fruit, soup, etc., but it’s not quite enough.

Anyway, I’m grateful for this turn of events. Three rounds of chemo down, nine to go.

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First round of chemo

I began my first round of FOLFOX and Avastin chemo on August 4th. It is now the 18th, and my second round begins tomorrow.

During my first week, I threw up constantly and couldn’t even keep a sip of liquid down. When I began throwing up in the oncology office, the chemo nurse whisked me back to an easy chair and began an IV infusion. I went in for another infusion the next day.

Two days later, I was in the hospital (on a Sunday morning) for a third infusion, and I was able to take my first food — a bit of mashed potatoes.

Well, this non-stop throwing up and extreme dehydration is definitely not going to work for 24 weeks of chemo. My oncologist plans to reduce one chemo drug a bit and change all of my nausea meds for the second round. We’ll see how it goes.

I have not been able to go near the computer or do anything that requires attention. Mostly I have been curled up on the sofa in fetal position for two weeks. Hope these new meds are effective.

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What do you do when you can’t find hope?  I knew the grim statistics for stage IV colon cancer survival.

I did not want to leave my husband. I didn’t want my children, both in their twenties, to see me die. I did not want to leave this beautiful earth.

I was a former chaplain, and I had helped many others find hope. But I could not find it for myself.

I went into the valley, all the while yearning for some sign of comfort or presence. It was a lonely time. Even with a loving and supportive family, facing my own mortality was a journey I had to make on my own.

I was truly bereft. I had experienced lonely spiritual times before, but this was particularly dreadful because it was going to affect other people – people I loved dearly.

In the dark nights of the soul, we really have no choice but to wait – just to be with ourselves in that place and experience the turmoil and the stillness, and maybe develop some more patience along the way. Dark nights of the soul can last a short time or a lot, lot longer (generally longer for me).

But they don’t last forever.

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