Coming out of sleep, I open one eye. I am assaulted by the green display of the bedside alarm clock. Three AM. A thought is trying to come to the surface...why is 3AM significant? What? Oh, yes. I should get up and take my Tarceva tablet. Next thought: I just woke up, so I've actually been asleep! Wow!
I ease myself out of the bed, night-vision straining to detect any of three dogs that might be underfoot. There is some light coming in through the blinds. I see that Boo, our 8 year old Schipperke, has left his bed and is laying on his side right in my path. I pad along carefully, so as not to disturb him. Duke, 9 year old GSP is still curled up in his bed, vocalizing ever so softly in his dreams of finding birds. Jack, 4 year old Schipperke, sound asleep in the ball bed. My husband David did not stir when I got out of bed.
I reach the vanity and tap on the lighted mirror. The Tarceva bottle is right there on the counter next to the water glass. My hand closes around the medication bottle and for a moment, I am keenly aware of what it is in my hand. A month's worth of Tarceva costs about $5,000 (yes, five thousand dollars). I am blessed to have excellent insurance: my co-pay: $10. I say a quiet prayer of thanks for that. The cost of the tablet in my hand is a day's pay for a lot of people. This expensive drug is working for me, though. It cost them millions and millions to develop it. I'm so glad they did. Another quiet prayer for the researchers who worked for years until they had a viable drug.
The cold water tastes good. My meds make my mouth dry. I notice how dry the skin on my legs and abdomen feels. My scalp isn't tingling so badly tonight. That keeps me awake quite often. Tarceva side effects. I'm grateful and mindful of living in a time, place and situation that a treatment like this is available to me. Another silent prayer of thanks. I set the glass down on the vanity as quietly as possible and carefully make my way back to bed. The drug is once again in my body, targeting the lung cancer cells wherever they may be. The drug is giving me more time...more "healthy" time, I hope.
I carefully slip back into bed. Boo and Jack didn't move. Duke has settled down, his nocturnal hunt completed. Sleep does not come: instead I consider what it means to my life to have access to this kind of care for this kind of illness. I need to honor this. I look at the clock again; it's nearly 4AM. I trust that the Lord can use cracked pots and broken bodies in His work. I pray my gratitude, thankfulness and at some point fall asleep.....because...
I feel a cold nose pushing on my arm. The mouth belonging to that nose bites down on the sheet and blanket, and with a hard tug, pulls the bed clothes off of me. David is not there. He got up very early. I'm still trying to fend off Jack, when Boo joins in on the bed, voicing his impatience with me with his rough, peculiar bark. Duke shakes himself, his long ears slapping together and on his head with loud smacks.
I struggle out of bed and walk over the retrieve my robe off the hook by the vanity. My eyes come to rest on the Tarceva bottle. I smile slightly, and with another small prayer of gratitude, allow my dogs to herd me out of the bedroom and into my day....
Wednesday, September 29, 2010
What next? Coming to grips with me as I am...
All in all I think I've done a pretty good job of coping with all the huge changes that have come into my life since April. I am, in many ways, a far different person now than I was then. The emotional and spiritual changes- all positive. The physical changes I am still dealing with.
This next section sounds like I'm whining. Maybe I am. I know there are people with far greater physical infirmities than I have...but I am coping with the hand I've been dealt. No, the Lord is not punishing me. I'm being pushed to change and to grow. I'm supposed to learn from all this. I know I have, but it has not and is not easy.
I'm not the first or only person around who suffers from fatigue; this is an age old problem with many causes. Not surprising in someone who isn't sleeping well.
I'll get it in my head to do something, and try to do it. I tried to do some weeding today. Sounds simple enough. Bending over causes bad reflux problems because of the way my heart, trachea and esophagus have shifted to the left since my surgery. It doesn't take long till I'm out of breath and just resting. The weeds don't care about my heavy breathing, or my coughing. I could do very little, even sitting on a rug scooting along. Simple tasks like laundry must be done in shifts. Do some, rest. Repeat. We've hired a lady to help with the big housecleaning because I just can't do it.
I would love to quit coughing. Not only has it toasted my voice, but it's exhauting. It wears me out. We're not talking about a little ladylike cough, I mean like I'm coughing up my toes. It's embarassing. It has made speaking incredibly difficult and talking on the phone almost impossible. It's a vicious cycle: coughing makes it hard to speak and speaking makes the cough worse. Not a good thing in a medical clinic. It's also made playing the harp in public impossible.
The shortness of breath can be significant. I frequently am very dizzy when I stand up.
I haven't even touched on the side effects of the medications, which are a delightful trip through goober-land on on their own.
Some days I feel like I'm just sitting here using up oxygen. I spent untold hours of study and devotion and the majority of my inheritance on my master's degree / Adult Nurse Practitioner. I've done an extra year's study in hepatology. Now--I'm unable to use that training. I want so desperately to go back to work, but do I have the stamina--emotional and physical? Will I get my voice back / cough control enough to make it possible?
Dear Lord,
You have given me everything and in such abundance, including the means to help people medically. There are physical issues that are preventing me from continuing that, and I'm feeling useless. Heal me enough Father, so that I may continue to serve You, or show me how I should otherwise serve. I don't want to miss your message or plan. I humbly ask this in the name of your precious Son Jesus...Amen
This next section sounds like I'm whining. Maybe I am. I know there are people with far greater physical infirmities than I have...but I am coping with the hand I've been dealt. No, the Lord is not punishing me. I'm being pushed to change and to grow. I'm supposed to learn from all this. I know I have, but it has not and is not easy.
I'm not the first or only person around who suffers from fatigue; this is an age old problem with many causes. Not surprising in someone who isn't sleeping well.
I'll get it in my head to do something, and try to do it. I tried to do some weeding today. Sounds simple enough. Bending over causes bad reflux problems because of the way my heart, trachea and esophagus have shifted to the left since my surgery. It doesn't take long till I'm out of breath and just resting. The weeds don't care about my heavy breathing, or my coughing. I could do very little, even sitting on a rug scooting along. Simple tasks like laundry must be done in shifts. Do some, rest. Repeat. We've hired a lady to help with the big housecleaning because I just can't do it.
I would love to quit coughing. Not only has it toasted my voice, but it's exhauting. It wears me out. We're not talking about a little ladylike cough, I mean like I'm coughing up my toes. It's embarassing. It has made speaking incredibly difficult and talking on the phone almost impossible. It's a vicious cycle: coughing makes it hard to speak and speaking makes the cough worse. Not a good thing in a medical clinic. It's also made playing the harp in public impossible.
The shortness of breath can be significant. I frequently am very dizzy when I stand up.
I haven't even touched on the side effects of the medications, which are a delightful trip through goober-land on on their own.
Some days I feel like I'm just sitting here using up oxygen. I spent untold hours of study and devotion and the majority of my inheritance on my master's degree / Adult Nurse Practitioner. I've done an extra year's study in hepatology. Now--I'm unable to use that training. I want so desperately to go back to work, but do I have the stamina--emotional and physical? Will I get my voice back / cough control enough to make it possible?
Dear Lord,
You have given me everything and in such abundance, including the means to help people medically. There are physical issues that are preventing me from continuing that, and I'm feeling useless. Heal me enough Father, so that I may continue to serve You, or show me how I should otherwise serve. I don't want to miss your message or plan. I humbly ask this in the name of your precious Son Jesus...Amen
Tuesday, September 28, 2010
Good news! Tarceva is working! Sharing my story...
This post comes a bit late. I had my follow up CT on 9/20, and shortly after my scan, David and I took off to a cabin in Coshocton County near Roscoe Village. Our getaway had a dual purpose: to prepare ourselves for whatever the result of the scan might be, and also to celebrate our third wedding anniversary on September 22.
When the phone rang on Wednsday morning (coincidentally 9/22) at 7:30AM, we both knew it would be about the scan. My precious CNP colleague working with the medical oncologist called to tell us that the mass in my spleen had decreased in diameter from 3.8cm to 2.7cm. This reflects about a 50% decrease in mass, which is extraordinary.
When I hung up, there was gratefulness and praise to God, but it was not a gleeful kind of happiness. Both of us were prepared for bad news, perhaps I more than David. The good news was tempered with the knowledge that the Tarceva is working --- for now. It is not and never will be a cure; we are buying time.
Time~~time to live, to love my husband and my family, to serve God, to try to make a difference somewhere. Time~~not as I was before: strong, healthy and confident, but changed. Vulnerable, compromised. Not taken out of service, but the nature of my service and ability to serve has changed. I can no longer live my life 500 miles per hour with my hair on fire, consumed by my work, my patients, my pet projects.
Yesterday the medical oncologist told me that among patients on Tarceva, the average time until evidence of disease progression is about 12 months. I will have a CT scan of chest and abdomen about every 2 to 3 months. PET, bone and brain scans are not recommended for serial follow up. Those would be done if I become symptomatic. He has patients who have been on Tarceva for several years...I hope to be able to count myself among them.
I was honored to be asked by my pulmonologist (who originally diagnosed me)to speak to the second year medical students, both as as a patient, but also as a medical professional. Today, we presented my case to about 70 students. They were very attentive, and I was able to press home some points near and dear to me.
First: healthy non-smoker with chronic post-nasal drip / cough. At what point do you suspect cancer? Second: appearances don't tell the whole story. I am a perfect example of someone who looks good, but who is very ill and with substantial decrease in function. Third: level with your patients about your differential diagnosis, even if --especially if--- you don't know for sure. Explain your plan to get answers- tests, referrals, etc. Having a plan in place to get answers is comforting when that is all there is.
The students asked wonderful questions. I gave my contact information to one student who will get it to the group. I hope that I have put a face on lung cancer...that they might follow if they wish to do so.
When the phone rang on Wednsday morning (coincidentally 9/22) at 7:30AM, we both knew it would be about the scan. My precious CNP colleague working with the medical oncologist called to tell us that the mass in my spleen had decreased in diameter from 3.8cm to 2.7cm. This reflects about a 50% decrease in mass, which is extraordinary.
When I hung up, there was gratefulness and praise to God, but it was not a gleeful kind of happiness. Both of us were prepared for bad news, perhaps I more than David. The good news was tempered with the knowledge that the Tarceva is working --- for now. It is not and never will be a cure; we are buying time.
Time~~time to live, to love my husband and my family, to serve God, to try to make a difference somewhere. Time~~not as I was before: strong, healthy and confident, but changed. Vulnerable, compromised. Not taken out of service, but the nature of my service and ability to serve has changed. I can no longer live my life 500 miles per hour with my hair on fire, consumed by my work, my patients, my pet projects.
Yesterday the medical oncologist told me that among patients on Tarceva, the average time until evidence of disease progression is about 12 months. I will have a CT scan of chest and abdomen about every 2 to 3 months. PET, bone and brain scans are not recommended for serial follow up. Those would be done if I become symptomatic. He has patients who have been on Tarceva for several years...I hope to be able to count myself among them.
I was honored to be asked by my pulmonologist (who originally diagnosed me)to speak to the second year medical students, both as as a patient, but also as a medical professional. Today, we presented my case to about 70 students. They were very attentive, and I was able to press home some points near and dear to me.
First: healthy non-smoker with chronic post-nasal drip / cough. At what point do you suspect cancer? Second: appearances don't tell the whole story. I am a perfect example of someone who looks good, but who is very ill and with substantial decrease in function. Third: level with your patients about your differential diagnosis, even if --especially if--- you don't know for sure. Explain your plan to get answers- tests, referrals, etc. Having a plan in place to get answers is comforting when that is all there is.
The students asked wonderful questions. I gave my contact information to one student who will get it to the group. I hope that I have put a face on lung cancer...that they might follow if they wish to do so.
Wednesday, September 8, 2010
On the bike
For as long as I can remember I have loved riding my bike. I can still recall in vivid detail the moment that my training wheels came off for the first time in the nice flat driveway of my gradparent's house. My bike meant fun, transportation, and freedom.
It got serious about age 13 when I started doing long distance rides with the local American Youth Hostels group (now Columbus Outdoor Pursuits). I would pore over Ohio county maps, looking for what might be interesting routes.
In short, since that time, getting out into the countryside on my bike has always been important to me not only physically, but emotionally, spiritually and psychologically as well. Any of you who knew the situation with me and my ex-husband know that I would never have survived the years 1998-2004 were it not for my bicycle...taking me to the roads that called to me to ponder, think and pray.
More recently, my husband took up cycling the year before we got married (2006). He has become a firm addict/afficionado. We love watching bike racing on TV, especially the Tour de France.In early 2008 we bought a Burley Rumba tandem. The way riding a randem is an analogy for marriage is a topic for another piece. Suffice it to say for now, we LOVE riding the tandem.
We can actually hear one another better on the tandem than when we are riding our single bikes side by side. Maybe he likes it because he can request a back-scratch any time he feels like it. Best of all, we can share the beauty of the countryside together: the gold to brown change of the soybeans as they approach harvest, the corn tassles, the freshly turned fields, an amazing variety of cloud formations and sunsets. We also have a game called "Roadkill Identification", but I'll omit those details here.
After thinking "Am I going to die soon?", "Will I ever be able to ride (a bicycle) again?" was my second concern after the doctors told me my left lung needed to be removed. There I was, the healthiest person they had ever seen with lung cancer. A non-smoker, no health issues other than some pretty impressive allergies....
For weeks after surgery the pain was considerable. Now, 12 weeks out, breathing is still an issue-- as is yawning and sighing....those things are not satisfying with only one lung. I'm feeling somewhat stronger and not quite as depressed by the limitations imposed by my physical changes.
I have prayed and prayed about riding again. A week or so ago, David and I went out on the tandem for a 3 mile ride. I was encouraged. Tonight, I prayed. The weather was a cool upper 60s, a light wind from the SW. I got my bright red Cannondale R600
down from where it hung from the garage ceiling. I felt excitement and dismay at the same time. Could I ride? Could I be satisfied with going 7 mph if need be, just to keep going?
Pre-ride checks done. Helmet, gloves, sunglasses on. Trip meter zeroed out. Water bottle iced and full. Inhaler and cell phone in back pocket. Driver's license and keys in handlebar bag. I walked the bike to the end of our gravel driveway and set her gently on the street.
Right leg over, clipped in. Deep breath...push off and up the street I went. Find the right gear. Easy spin up the long gentle incline that is Walnut Street. Not feeling any more winded than usual...so far so good.
As I went farther toward the edge of town, I could feel the breathing become much harder. The cough that has hounded me for months joined the party. I coughed and coughed the entire ride, inhaler not withstanding. When it would be bad, I'd slow down to barely more than a crawl, practically doing a track stand.
I constantly evaluated my breathing and exertion, bearing the cough in mind...and shifted gears accordingly. Once out of town, I was ecstatic that I had made the effort. Early fall in our part of central Ohio is lovely. Two minutes away from the house, I was in farmland. Most of the soybeans were a warm gold color...the last days before they go to brown. I visited with a group of 4 or 5 German Shorthaired Pointers (like our Duke) who live along the route. Repeatedly, I would slow down to a crawl to catch my breath....so I could go on...and go on I did. I stopped when traffic dictated, but otherwise really kept moving, albeit at a snail's pace.
This was not a ride about speed. It was a ride about "Can I even do this?". Yes, I can. I will not be able to ride like I did before, but so what? I can imagine other riders thinking, "What's up with that gal who's all decked out for riding, with the hot bike who's such a slow poke? Dag!" I don't care..yes I do. The prideful part of me wants to have a jersey that says on the back: "I only have one lung--but I'm riding!"
I don't know what the CT scheduled for September 20 will show. If the Tarceva isn't working and I have to go on an aggressive chemo cocktail, that will tear me back down again. If it's working, then I continue the path I'm on and continue to pursue the bike. My cough is a bit worse today...I challenged my respiratory system.
I was out there. I did it. I can do it again and each time will get better.
It got serious about age 13 when I started doing long distance rides with the local American Youth Hostels group (now Columbus Outdoor Pursuits). I would pore over Ohio county maps, looking for what might be interesting routes.
In short, since that time, getting out into the countryside on my bike has always been important to me not only physically, but emotionally, spiritually and psychologically as well. Any of you who knew the situation with me and my ex-husband know that I would never have survived the years 1998-2004 were it not for my bicycle...taking me to the roads that called to me to ponder, think and pray.
More recently, my husband took up cycling the year before we got married (2006). He has become a firm addict/afficionado. We love watching bike racing on TV, especially the Tour de France.In early 2008 we bought a Burley Rumba tandem. The way riding a randem is an analogy for marriage is a topic for another piece. Suffice it to say for now, we LOVE riding the tandem.
We can actually hear one another better on the tandem than when we are riding our single bikes side by side. Maybe he likes it because he can request a back-scratch any time he feels like it. Best of all, we can share the beauty of the countryside together: the gold to brown change of the soybeans as they approach harvest, the corn tassles, the freshly turned fields, an amazing variety of cloud formations and sunsets. We also have a game called "Roadkill Identification", but I'll omit those details here.
After thinking "Am I going to die soon?", "Will I ever be able to ride (a bicycle) again?" was my second concern after the doctors told me my left lung needed to be removed. There I was, the healthiest person they had ever seen with lung cancer. A non-smoker, no health issues other than some pretty impressive allergies....
For weeks after surgery the pain was considerable. Now, 12 weeks out, breathing is still an issue-- as is yawning and sighing....those things are not satisfying with only one lung. I'm feeling somewhat stronger and not quite as depressed by the limitations imposed by my physical changes.
I have prayed and prayed about riding again. A week or so ago, David and I went out on the tandem for a 3 mile ride. I was encouraged. Tonight, I prayed. The weather was a cool upper 60s, a light wind from the SW. I got my bright red Cannondale R600
down from where it hung from the garage ceiling. I felt excitement and dismay at the same time. Could I ride? Could I be satisfied with going 7 mph if need be, just to keep going?
Pre-ride checks done. Helmet, gloves, sunglasses on. Trip meter zeroed out. Water bottle iced and full. Inhaler and cell phone in back pocket. Driver's license and keys in handlebar bag. I walked the bike to the end of our gravel driveway and set her gently on the street.
Right leg over, clipped in. Deep breath...push off and up the street I went. Find the right gear. Easy spin up the long gentle incline that is Walnut Street. Not feeling any more winded than usual...so far so good.
As I went farther toward the edge of town, I could feel the breathing become much harder. The cough that has hounded me for months joined the party. I coughed and coughed the entire ride, inhaler not withstanding. When it would be bad, I'd slow down to barely more than a crawl, practically doing a track stand.
I constantly evaluated my breathing and exertion, bearing the cough in mind...and shifted gears accordingly. Once out of town, I was ecstatic that I had made the effort. Early fall in our part of central Ohio is lovely. Two minutes away from the house, I was in farmland. Most of the soybeans were a warm gold color...the last days before they go to brown. I visited with a group of 4 or 5 German Shorthaired Pointers (like our Duke) who live along the route. Repeatedly, I would slow down to a crawl to catch my breath....so I could go on...and go on I did. I stopped when traffic dictated, but otherwise really kept moving, albeit at a snail's pace.
This was not a ride about speed. It was a ride about "Can I even do this?". Yes, I can. I will not be able to ride like I did before, but so what? I can imagine other riders thinking, "What's up with that gal who's all decked out for riding, with the hot bike who's such a slow poke? Dag!" I don't care..yes I do. The prideful part of me wants to have a jersey that says on the back: "I only have one lung--but I'm riding!"
I don't know what the CT scheduled for September 20 will show. If the Tarceva isn't working and I have to go on an aggressive chemo cocktail, that will tear me back down again. If it's working, then I continue the path I'm on and continue to pursue the bike. My cough is a bit worse today...I challenged my respiratory system.
I was out there. I did it. I can do it again and each time will get better.
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