Wednesday, October 30, 2013

Chronicles from Chemo-Land: A Guest Post by Val


Tomorrow (Thursday) will mark two weeks from my third treatment. Last week, I felt good enough to go to the Cancer Class to help out, give the odd instruction and do a pose or two myself. I love working in a team context with the other teachers and volunteers. We calmly go about the work of helping people and solving problems and we are rewarded by seeing them respond positively to yoga. Being there gave me a real boost and feeling of normalcy. I’ll have the pleasure of being there again tomorrow.

I didn’t have much fatigue after my first two treatments and I was surprised when it hit me so hard and so suddenly after the third. I guess I expected it to build gradually but it didn’t. Everyone talks about the fatigue in general terms or they say things like “you will have the worst fatigue you can imagine” and “you can’t give in to it” or “you have to give in to it and rest”!

As for the last two seemingly contradictory comments, I have found that both are true. I have gone for walks when I didn’t think I could even get up off the bed or sofa and felt the fatigue lift like magic. At other times, lying over a bolster seemed to be the only option. The trick is finding out when to give in and when not to give in!

As for the first comment about the worst possible fatigue, well I do know something about that from many of my adventurous experiences in the past. On canoe trips, backpacking trips and skiing trips, I have come to the “brink of exhaustion” many times. Times when all I could do was sit down and hold my head in my hands until the sheer physical inertia of it passed and I could do what needed doing—making camp, cooking food, swatting a mosquito…

So, I know something of that deep, physical, “stop you in your tracks” fatigue. What chemo fatigue has in addition to that, at least for me, is a bleakness, an emotional darkness and irritability. In fact, I’ve come to recognize that fatigue is setting in when I begin to feel bleak.

It isn’t simply fatigue. I think that the toll the chemo takes results in much less strength and stamina. Because I have no stamina, the fatigue can set in quickly, seemingly out of the blue. This may seem obvious, but I had to learn about it. I am learning to recognize when ordinary daily stimulation could precipitate it; e.g., a conversation with more than two people! A fragile mental state accompanies the fatigue and it is better for me to do mindless, repetitive tasks such as washing the dishes than trying to cook something edible.

My restorative yoga practice is a great help. From just lying over the bolster, I’ve built up to 4 to 6 poses in an hour to hour and a half. But, like any other physical activity, I’ve had to be careful to not over do it. What a concept, eh? Life seems to be just one long lesson in how to not overdo it or under-do it! OK, there are other lessons! This just seems to be a difficult one for me.

Hanging in

 
Apologies for the long silence on the blog. Time has been flying while energy has been flagging. However, I have both time and energy to post these pics of Val in her new fancy head gear sent by our friend Miriam from Nova Scotia. Natty, eh?

Val is hatching a second guest column, and I am noodling on a post, so check back here for some new content....soon-ish.


Monday, October 21, 2013

Three pics

Just a few pics this evening to open the week with. Fatigue hit Val something fierce on the weekend. Better today. Who knows what tomorrow will bring...

Oh look. Chester has discovered the recliner! Sunday afternoon.
It was grey and cold outside, but inside all was warm and cozy! 

Val modeling one of her Jeanie Beanies at the lake 

Val modeling same Jeanie Beanie at the lake, side view

Sunday, October 20, 2013

Posting comments to the blog

Apologies to anyone who has tried to post a comment to the blog. I have corrected the setting to allow anyone to post a comment, and every comment is moderated by me first. This will, I presume, enable me to ward off the crazies should they find the blog by accident.

Saturday, October 19, 2013

Writer's worst fear

Of course. It's every writer's worst fear: The guest columnist's post gets more hits than the original writer's posts have received in the past. Sigh. 

Friday, October 18, 2013

Guest Appearance by Val: Chuckles from Chemo-Land

Friday morning 

I had my third chemo treatment yesterday morning. I was all geared up for my steroid high—planning my walk, making dinner for Amanda, enjoying my light-feeling body and almost pain free ankle. After the first two treatments, I had a great appreciation for why athletes love steroids!! However, it was not to be. I staggered out of CancerCare on rubber chicken legs holding Jacki’s arm! At home, I couldn’t keep my eyes open and fell into a restless, semi-sleepy state over a bolster for the duration of the afternoon. I couldn’t believe how deprived of that steroid boost I felt! Luckily, a very good dinner picked me up. This morning I am happy to say that some steroid effect is still in my system so will head out for a walk today. Do laundry…love Dexamethazone! (A little parody on “love life, do yoga”) but not less yogic for that.

The day before treatment, I saw my oncologist, Dr. Brandes. He asked me if my chemotherapy experience was worse or better than I expected. I had to (reluctantly) admit that it wasn’t as bad as I thought it would be SO FAR (hoping for a meaningful emphasis) and I was hoping he would tell me if I could expect a lot worse or different symptoms, etc. as treatments proceeded. I said that there was some anxiety about not knowing. He said that he couldn’t and muttered something about funny things can happen, people have different experiences, blah, blah. Well, I thought, life in chemo-land is like life everywhere, uncertain. His comment was honest and just the thing no one likes to hear; the kind of comment that makes “alternative” medicine appeal to people because those “docs” are always so certain. Too bad they are also almost always wrong. Humans hate uncertainty. But, it is one of the most powerful forces in our lives. I’d like to think that I’m developing some equanimity about it!

Brandes has ordered a CT scan for just before my next treatment because he said: “Well your blood work doesn’t show me anything. All your numbers are good, excellent in fact. And, I want to know what is going on in this area we are treating.” Fine, I say. What’s a little more radioactivity? Bring it on!!” He looked surprised and then laughed. I like to keep my doctors on their toes and happy. I feel it is the least I can do…

Last week I managed to conduct a Level I assessment for Janine, part of which took place at the Friday morning class. How wonderful it was to be in the studio with everyone and doing something positive for our collective yoga life. Janine passed with flying colors, by the way! Congratulations are in order.

I also attended the first session of the Cancer Class. I introduced the class and then Regan took over the instruction with our trusty helpers Arlene and Erika. Erika and I had fun helping a woman with a very bad back, who couldn’t get up and down off the floor and used a walker. With her permission, Erika took some photos of her set-ups on her iPhone to remember for when I wouldn’t be there the following week because it was my chemo treatment.

So, there I am hooked up to toxic drugs through my port, eating bad cookies and drinking bad coffee (as a break from water) brought by the volunteers when Jacki’s iPhone goes off with photos from the class and cryptic messages like: “Look ok?” or “Something's wrong here”; “what about the arms?” Well, I’m happy to say that they did a great job adjusting the tougher problems. I am really proud of them—Regan, Arlene and Erika—job well done!

I can feel my “raisin” eyes setting in so that means my time on the computer is about over for a few hours at least. One of my most annoying symptoms is dry eyes. Thanks to Guruji, I have an Indian bandage to wrap my head after putting in eye drops. Thanks to Lauren and Dale Mulhall, I have wonderful eye drops and gel that Lauren said to only put in at night. I followed her instructions and good thing too. The gel makes everything really blurry and opaque but that doesn’t really matter because the extra gel sticks your lashes shut so you can’t open them anyway! My eyes feel so much better in the morning. Thanks again.

Thanks to everyone for everything you have done for us and for all the wonderful cards, emails, etc. Pass the link to the blog around as it is much easier way for Amanda and I can keep in touch with you all. I can’t promise to send out a lot of individual emails because it is tiring and, did I mention my eyes??

Love,
Val

Thursday, October 17, 2013

Sitting pretty

Today, Val completed session 3 of chemo. She experienced no high from the steroids this time,  just fatigue. When I got home from work, Val was resting. She perked up after dinner.

Yesterday, Val had a good appointment with Dr. Brandes (oncologist), who was chipper and upbeat about things. Her blood work is good and he has ordered a cat scan for just before the next chemo session; apparently that test will show more than the blood work can about how things are doing. Her numbers are all so good that they are not telling Brandes much; so he said. Hence the cat scan. Seems like good news to us. We'll go with that for the moment.

Val's new recliner was delivered yesterday afternoon, and she enjoyed a cup of tea in it in the sunroom. It will be most satisfactory! Also, the new furnace was installed last week and we are appreciating its efficiency, especially as the season is turning, and the mornings and evenings are definitely cooling off here.

We'll stay in the city this weekend, after having had a splendid weekend for Thanksgiving at the cottage last weekend. The weather was glorious and it was wonderful to be out there, enjoying the beauty of the lake and leaves and sunshine.

Hope your season is turning as it should.
Love,
Amanda



Thursday, October 10, 2013

Moving along


Thursday evening

I am feeling better with things now. Thank you for the messages with words of encouragement and wisdom (and book suggestions). Everything has helped, and especially the comments below:
  • Take time  for yourself by yourself to enjoy something without having to make sure everyone else is OK with it too
  • Don't be angry, it uses up far too much personal energy for little or no purpose. There is nobody to be angry with here ... Without a target, anger can only rebound on you or on those close to you, worst of all on Val.
  • Val is strong, as are you. Yes it is all exhausting, debilitating, demeaning, demanding and damn it all.....it is one cancer moment; moment by moment. Of course you are feeling sorry for yourself, and your beloved -- and sleep and writing, and drinking, and walking, and breathing will help.
  • I think of other long roads for you and know you have the love, resilience and will to go through this, but I also understand hitting walls, big anger and exhaustion.  The grace we find means nothing without these emotions...so find your outlets and be kind with yourselves as you feel everything.

It is nurturing to receive your support in this way, and I welcome it. Thank you.

Val is experiencing dry eyes, a runny nose, and the ongoing fatigue...but otherwise is remarkably chipper. This morning, she assisted with the first session of Yoga North's cancer class (which she founded many years ago) and was still upright at supper time. Remarkable, really. 

We will head to the cottage on Saturday for the long weekend. That will be good. We wish you a happy Thanksgiving, however you spend it. 
Amanda 

Tuesday, October 8, 2013

Cooked and baked

We saw the radiation oncologist, whose name is Cook, this morning (Tuesday).

Val will have five weeks of daily radiation once she has completed her chemo sessions. We are thinking she will likely have six of those, so four more to go - next one coming up on Thursday the 17th.

This is all beginning to feel quite heavy to me. I know there will be an end to it all, but I just felt tired and angry this afternoon. This evening just tired. That will move along, too, I know, as I accommodate to the new realities.

We had baked potatoes with organic beef burgers for dinner, and both were a hit with Val's palette. Hooray!

How about a few more book recommendations, folks? I've had a grand total of two so far: Thank you Bob A (for Bill Bryson), and Yvonne and Deb R (for Sarah Waters' Night Watch). Don't any of you out read books any more?

Don't give up on me when I'm fractious. Please. This, too, shall pass.
Amanda


Sunday, October 6, 2013

Update at Sunday evening


Chester is very good company for Val,
whom he favours in this house. 
Life just keeps unfolding here. It seems mundane to post about these matters, but I think that even -- or maybe especially -- ordinary goings-on keep you connected with us. So. Here you are. The last few ordinary days, in words with a few pics.

Wednesday I hit the proverbial wall. It all just seemed too much at dinner time. Val and I sniped at each other. Nothing serious. Just one too many chores amidst a few too many emotions. Maybe you've been there yourself sometime? We were gratefully rescued from each other by Jacki and Kiwi who took Val for a walk, and Yvonne and Bella who took me in the opposite direction. That sorted us out.


Val in crocheted cap; soon it will 
be cold enough to wear 
Jeanne's 'Jeannie Beanies'!
Thursday unfolded, then Friday, and now Saturday and Sunday. Val's ankle continues to give her significant pain, such that she uses a cane quite often, and her hair seems to be growing; at least the bald patches seem to be covered with long-ish peach fuzz. Food continues to mostly taste like cardboard at best, horrid bitterness at worst. She has less stamina and energy than she would like, but she got the Schnitzers and Yvonne and me out Saturday afternoon to see GRAVITY, the flick with Sandra Bullock. Our review is 'interesting, not enthralling but captivating nonetheless, certainly for its cinematography and possibly for its story of woman-in-space-alone'. I think Erika is right when she advises to see it in an IMAX setting so that the 3D effects and sound are all-surround. We followed the movie with tea and food at McNally's, all of which really tired out Val, although we did go for a quiet walk before dinner, then an early bedtime.

Today we both did some desk work, had a short visit with Eugene and then shared dinner with Yvonne, Erika and Eva - very nice.
Friday evening we bought a 
counter-top grill for cooking the meat
 that is at the centre of many of Val's meals
 these days. No sooner had we the box on 
the floor than Holly began
to gnaw at the cardboard - 
a great way to get out her
aggressions. 

We are heading into what sounds like a lovely week weather-wise: sunny and warm-ish. Maybe I'll get our windows washed yet! Monday the car goes in for the winter tires; Wednesday the new furnace will be installed. Then we'll get ready for the Thanksgiving long weekend at the lake beginning Friday evening. Yahoo!

I've done some sorting out in my mind about two of my classes, so I feel better organized moving into week 7 of the term. That feels good. I'd like a good book to read. Any suggestions?

That's all for now.
Have a good week.
Amanda


Tuesday, October 1, 2013

Brief update

It's Tuesday evening, and Val has had two days of less pain than she had on Sunday. We don't understand why, and we're not wondering, just accepting. She's not leaping tall buildings, but she did drive up to Deluca's for supper ingredients and prepped the veg for our usual pasta dish. Wonderful.

It's a bit busy around here: Chester had his annual shots yesterday. Holly may have a minor bladder irritation. I had a very short stomach upset Monday morning that was resolved by class time (1pm). I'm having my teeth cleaned Wednesday afternoon. Thursday Linda is coming to clean the house (blessings on her!). The weekend will see us (me?) tidy the basement in advance of the new furnace being installed on Wednesday (remember that service call a while back? yup - the heat exchanger has cracks in it. time to bring in a new one. sigh). Monday I take the car in for winter tires and an oil change. Tuesday Val has an appointment to see the radiation oncologist (we weren't expecting this so soon; will know more once we see him) and then we'll roll our way into the Thanksgiving long weekend. Then Val has chemo session #3 on Oct. 17. Good grief - pretty soon it will be November. Oh my goodness.
Fall on Lake Winnipeg

In the meantime, we've enjoyed a couple of lovely fall days. I wore sandals again today. Lovely.

xxoo
Amanda