So, here I sit again, staring out the window into grey cloudy skies that predict an early fall, attempting to drown out the whirrs, clicks, and alarms of the chemo infusion clinic with a healthy dose of Enya. My bloodwork was encouraging this morning, with my neutrophils 'recovered' to a nearly-normal 3000 per milliliter. The bone pain in my left femur was a predicted (and predictable) side effect of the Neulasta shot that I received two weeks ago, and I anticipate another one of those beastly injections on Wednesday to be sure we can finish Chemopalooza 2011 on time. All evidence points to finishing the fifth treatment this week, and then a final transfusion has been scheduled for October 3rd. Woo-hoo.
Karen and I went to the coast this last weekend with three other couples - dear friends that form a wonderful little book club / drinking association. I have been virtually a teetotaler for the past eight months, but let myself get a little wild by having a couple Bud Lite Limes. Lest anyone miss the irony of that, I have long been a fan of handcrafted and small lot beer batches. Local favorites include the Deschutes Obsidian Stout, the Ninkasi Tricerahops, and just about any Oregon-produced India Pale Ale. Drinking Bud Lime is like drinking a weak shandy. But I digress. We had a fun time laughing and playing games together, canoeing in the Siletz Bay, and traipsing around Robert's Book Shop in Lincoln City. It was a perfect relaxative prior to today, and we even got to watch the Packers win.
Namaste.
Monday, September 19, 2011
Friday, September 9, 2011
That giant sucking sound...
...is not jobs flooding into Mexico after NAFTA, despite Ross Perot's fiery speech. It is the sound of exasperation and fatigue from this particular cancer-boy. I am just past my 10th of twelve treatments (six before surgery, and six after), and it is not getting any easier. Between the chemo and the side-effect management drugs, I have been mostly horizontal for the past 72 hours. I am achy, sleepy, and generally tired. Last night, I was reminded of how I am not all that good with stuff beyond my control - which leads to me trying to control 'something' - and that is also a hard place for me to be. So both physically and mentally, I am not feeling good. Cancer still sucks.
So, only two more treatments! Suck it up. Easier to say than to do. I lament my inability to sleep, that I am cold during the hottest days of the year in Oregon, and that I am too weak to be of much use at home or at work. Two more of these weeks, and we will be on the upswing again. I sure hope so.
I am grateful for all the support I receive daily. My family and I are luckier than many. But today I am tired of feeling lousy, and that is that.
So, only two more treatments! Suck it up. Easier to say than to do. I lament my inability to sleep, that I am cold during the hottest days of the year in Oregon, and that I am too weak to be of much use at home or at work. Two more of these weeks, and we will be on the upswing again. I sure hope so.
I am grateful for all the support I receive daily. My family and I are luckier than many. But today I am tired of feeling lousy, and that is that.
Tuesday, September 6, 2011
Today
Somehow we managed to pile nearly 1500 neutrophils into a milliliter of my blood this morning, so I passed into the biochemical soup phase of existence again. Can I repeat for the record that my name is Ed Arabas, my birthdate is "mm/dd/yyyy" (I am hiding this in case there are hacker/lurker-types that skim blogs for important identifying details - most of you know my birthday anyways!), and I am supposed to get FOLFIRI plus aprepitent today?
Very tired and gut-achy, but glad to have number four almost under my belt.
Namaste.
Very tired and gut-achy, but glad to have number four almost under my belt.
Namaste.
Friday, September 2, 2011
Good times, bad times...
...I know I've had my share...
Those words are the beginning of the chorus lyrics for a Led Zeppelin song that came out in 1969. The song continues as a lamentation about the promises and disappointments of young love in a time that has been characterized as the free-love era. It is a song that has rattled around my brain for the past forty years or so. But it is easy to take just the beginning lines of the chorus and apply them more broadly - wouldn't you say?
Last week a dear friend from work announced that she had been diagnosed with "advanced ovarian cancer" (but without enough detail for me to deduce much of anything about her prognosis). But just her announcement is a crushing blow, as I feel like I know what is about to happen to her and in her world. She has been a pillar of support for me, and probably didn't even know it. Now the shoe is on the other foot, proverbially, and I am committed to support her however I can. Major surgery occurs this week, and I will be sending positive energy toward Portland on Thursday morning.
Many folks know that I was unable to be treated earlier this week due to my neutrophil level. Neutrophils are a key component of our white cell immunological defenses, and when they get too low (in the case of chemotherapy, below 1000 cells per milliliter) we are more susceptible to the casual illnesses (colds, infections, etc.) that we normally handle without noticing. So I have had an extra week of recovery and feeling good, and can say without hesitation that I prefer feeling good over chemotherapy. Like that is some kind of big news or something. Whatever. On Tuesday we will try a slightly different mixture of side-effect-countering drugs to see if we can improve the post-chemo treatment days a little. And I am moving up from neupogen/filgrastim (five daily shots to encourage white cell growth right after chemo) to neulasta/pegfilgrastim (a single more powerful shot given once the day after chemo). We shall see.
A dear, longtime friend of ours is visiting this weekend so that she and my wife can run a half-marathon together tomorrow. It is nice to hear their laughter together - about running, raising girls, long-ago escapades - and I am happy that I get to share some of their good times. That is really the key - to focus consciously on the good times, and to let the bad times go.
Namaste.
Those words are the beginning of the chorus lyrics for a Led Zeppelin song that came out in 1969. The song continues as a lamentation about the promises and disappointments of young love in a time that has been characterized as the free-love era. It is a song that has rattled around my brain for the past forty years or so. But it is easy to take just the beginning lines of the chorus and apply them more broadly - wouldn't you say?
Last week a dear friend from work announced that she had been diagnosed with "advanced ovarian cancer" (but without enough detail for me to deduce much of anything about her prognosis). But just her announcement is a crushing blow, as I feel like I know what is about to happen to her and in her world. She has been a pillar of support for me, and probably didn't even know it. Now the shoe is on the other foot, proverbially, and I am committed to support her however I can. Major surgery occurs this week, and I will be sending positive energy toward Portland on Thursday morning.
Many folks know that I was unable to be treated earlier this week due to my neutrophil level. Neutrophils are a key component of our white cell immunological defenses, and when they get too low (in the case of chemotherapy, below 1000 cells per milliliter) we are more susceptible to the casual illnesses (colds, infections, etc.) that we normally handle without noticing. So I have had an extra week of recovery and feeling good, and can say without hesitation that I prefer feeling good over chemotherapy. Like that is some kind of big news or something. Whatever. On Tuesday we will try a slightly different mixture of side-effect-countering drugs to see if we can improve the post-chemo treatment days a little. And I am moving up from neupogen/filgrastim (five daily shots to encourage white cell growth right after chemo) to neulasta/pegfilgrastim (a single more powerful shot given once the day after chemo). We shall see.
A dear, longtime friend of ours is visiting this weekend so that she and my wife can run a half-marathon together tomorrow. It is nice to hear their laughter together - about running, raising girls, long-ago escapades - and I am happy that I get to share some of their good times. That is really the key - to focus consciously on the good times, and to let the bad times go.
Namaste.
Wednesday, August 24, 2011
Candle in the wind
I am unabashedly swiping a theme from a fellow blogger - Jeanne Sather - and companion on the chemically-assisted cancer trail. If you want to see her post on this, look here (http://assertivecancerpatient.com/2011/08/a-word-game-candle-candles-.html).
As you know, I have been struggling with my feelings about cancer and its treatment lately, and the image of a candle in the wind is perfect. I am not referring to the idea that a life might end too soon, like the wonderful tribute created by Bernie Taupin (and sung by Elton John) to Norma Jeane Mortenson (Marilyn Monroe). I am seeing a flame, wavering back and forth, sometimes so close to being out that it is almost dark, sometimes flaming large and bright. A small flame, softly pushed to and fro by a breeze, working past the pool of wax surrounding it, finding fuel in odd places, burning firmly but tossed here and there.
My current experience of chemotherapy is like that - wavering, dimming, flaming - rarely feeling steady and warm. I struggle to sleep, to eat, to not be king of crankyland. I fail and triumph each day. My energy and focus flags at odd times, and I have a memory like Swiss cheese. I recover every couple of weeks, only to intentionally slam myself down again. Though I am honored and lucky to have so many people near and far sending my their energy and love, my flame often burns low.
Only three more treatments. Seems short enough and impossible at the same time.
Namaste.
As you know, I have been struggling with my feelings about cancer and its treatment lately, and the image of a candle in the wind is perfect. I am not referring to the idea that a life might end too soon, like the wonderful tribute created by Bernie Taupin (and sung by Elton John) to Norma Jeane Mortenson (Marilyn Monroe). I am seeing a flame, wavering back and forth, sometimes so close to being out that it is almost dark, sometimes flaming large and bright. A small flame, softly pushed to and fro by a breeze, working past the pool of wax surrounding it, finding fuel in odd places, burning firmly but tossed here and there.
My current experience of chemotherapy is like that - wavering, dimming, flaming - rarely feeling steady and warm. I struggle to sleep, to eat, to not be king of crankyland. I fail and triumph each day. My energy and focus flags at odd times, and I have a memory like Swiss cheese. I recover every couple of weeks, only to intentionally slam myself down again. Though I am honored and lucky to have so many people near and far sending my their energy and love, my flame often burns low.
Only three more treatments. Seems short enough and impossible at the same time.
Namaste.
Tuesday, August 16, 2011
Chemo, Round Three
I am sitting in my preferred chemo recliner at the oncology clinic. I have endured the port access and blood draws, have chatted with the physician assistant, and learned that my white cell counts are still low (neutrophils are at 1.21 and they need to be above 1.0 to allow me to be treated). I am getting chemo today, and will also get the five day treatment of neupogen again starting when they disconnect my pump. But I am not optimistic that I will be able to be treated in two weeks. Oh well. Maybe that extra week of recovery is more important than whatever schedule I have in my head?
I have also discovered a sensory reaction to the smell of the chemo clinic and the antiseptic swabs that they use to disinfect my skin prior to accessing my port, and also use to wipe the ends of the plastic connectors for the tubing. Me no likee that odor any more. And I am pretty sure that I will not miss it.
One final note about the chemotherapy process... and how it is somewhat depressing. The spaces that I inhabit during treatment are clinical and sterile, the sounds of the place include electronic bongs (signifying something must be done with someone's pump(s)) and a litany of medical terms explained to everyone around me, and the view from the windows is of treetops and sky - with a growing mass of spider webs that trap dust and cottonwood seeds. Most everyone around me has a dull look of resignation, and today I am the youngest patient in the place. The nurses are very competent and helpful, but they are so busy hurrying from patient to patient - summoned by the incessant bonging of the transfusion/treatment pumps.
Not to put too fine a point on it, but I am not liking this day's work.
I have also discovered a sensory reaction to the smell of the chemo clinic and the antiseptic swabs that they use to disinfect my skin prior to accessing my port, and also use to wipe the ends of the plastic connectors for the tubing. Me no likee that odor any more. And I am pretty sure that I will not miss it.
One final note about the chemotherapy process... and how it is somewhat depressing. The spaces that I inhabit during treatment are clinical and sterile, the sounds of the place include electronic bongs (signifying something must be done with someone's pump(s)) and a litany of medical terms explained to everyone around me, and the view from the windows is of treetops and sky - with a growing mass of spider webs that trap dust and cottonwood seeds. Most everyone around me has a dull look of resignation, and today I am the youngest patient in the place. The nurses are very competent and helpful, but they are so busy hurrying from patient to patient - summoned by the incessant bonging of the transfusion/treatment pumps.
Not to put too fine a point on it, but I am not liking this day's work.
Wednesday, August 3, 2011
Brevity
I am borrowing a page from another blogger tonight - and will keep this update very brief.
Yesterday was Chemo #2 (out of 6). Red and white cell counts are OK (low end of normal) but my neutrophil counts are low. Not low enough to miss treatment this time, but low enough to cause concern. We are going to start five days of neupogen injections to stimulate my bone marrow. Very slight change that this will cause some bone ache - but that did not happen in 2007 (last time I had this issue). We will know more about that in two weeks when I go in for the blood work prior to treatment #3.
We also got a lower dose of the steroid dexamethasone... went from 12mg to 4mg. This will help with the days of hyperactivity and hopefully with the nights of sleeplessness. But the nausea yesterday was palpable, and not even a little bit fun. But today was a lot better, and I hope that tomorrow will be an even larger improvement. Maybe next time we go with 6mg?
Namaste. Ed
Yesterday was Chemo #2 (out of 6). Red and white cell counts are OK (low end of normal) but my neutrophil counts are low. Not low enough to miss treatment this time, but low enough to cause concern. We are going to start five days of neupogen injections to stimulate my bone marrow. Very slight change that this will cause some bone ache - but that did not happen in 2007 (last time I had this issue). We will know more about that in two weeks when I go in for the blood work prior to treatment #3.
We also got a lower dose of the steroid dexamethasone... went from 12mg to 4mg. This will help with the days of hyperactivity and hopefully with the nights of sleeplessness. But the nausea yesterday was palpable, and not even a little bit fun. But today was a lot better, and I hope that tomorrow will be an even larger improvement. Maybe next time we go with 6mg?
Namaste. Ed
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