At the Solstice, it is still dark, but getting lighter.
I am out of bed and out of the house, but I am not yet going anywhere.
I am not coughing as much, yet I am still coughing.
I feel better, but I do not feel good.
I have cancer, but is it advancing, receding, or stagnating?
I am between darkness and light.
Tuesday, December 30, 2008
Wednesday, December 24, 2008
Christmas Eve 2008
Thursday, December 18, 2008
A Little Story
A little story about news magazines, in this case, Newsweek. Several months ago, a long, in-depth article about lung cancer appeared in that magazine. I was warned not to read it (thanks Amy, et al), but I could not resist. Although I was aware of much of the information, and recognized many of the physicians quoted in the article, including the oncologist from MD Anderson who is part of my own medical team, it was distressing nonetheless. When I mentioned my concerns about the article to Dr. Dubovsky, he admonished me for relying on Newsweek's version of the current state of lung cancer and its treatment. Well, it happened again. My brother pointed out an article about personalized medicine in the December 15 issue of this magazine. In a concise and informative explanation of targeted therapies for cancer, the magazine identifies Iressa as a targeted therapy for lung cancer. The problem is that except for patients already taking this drug with resulting positive benefits, Astra-Zeneca ceased marketing Iressa in the US as of September 15, 2005. It was replaced by a drug that was proving to be more effective. That drug? Tarceva.
Speaking of Tarceva, the most common side effect is an upper body rash that appears in 8 to 10 days, specifically on the face and scalp. My rash didn't want to wait. My face and scalp have already been invaded, big time. It is unsightly, it is uncomfortable, but it may be a sign that the drug is doing its job. No complaints here.
Instead of languishing as I have for months, I finally feel like I am moving forward again. I plan to enjoy some quality family time in the coming weeks. I mentioned some time ago that the Winter Solstice would be a turning point for me. Turns out I could have been on the money.
Speaking of Tarceva, the most common side effect is an upper body rash that appears in 8 to 10 days, specifically on the face and scalp. My rash didn't want to wait. My face and scalp have already been invaded, big time. It is unsightly, it is uncomfortable, but it may be a sign that the drug is doing its job. No complaints here.
Instead of languishing as I have for months, I finally feel like I am moving forward again. I plan to enjoy some quality family time in the coming weeks. I mentioned some time ago that the Winter Solstice would be a turning point for me. Turns out I could have been on the money.
Monday, December 15, 2008
It is slight, it is subtle, but there is an improvement in how I am feeling. It's easier to get out of bed, a little less coughing, a little more energy in my voice. A trip to Target that doesn't send me to bed for days, and thoughts of what I could be doing outside of my house. I am not actually acting on these thoughts, but it has been months since I have thought past my bedroom, let alone my house. My weight is still a problem, as it continues its slide. I thought I was eating enough calories but I am told that I am not. Milkshakes in December don't have the same appeal as they had in July.
Five hits of Tarceva down, ???? to go.
BTW, Tarceva costs $5,000.00 per month. Luckily, that translates to a $30 copay for me. Life is good, I guess.
Five hits of Tarceva down, ???? to go.
BTW, Tarceva costs $5,000.00 per month. Luckily, that translates to a $30 copay for me. Life is good, I guess.
Thursday, December 11, 2008
Sharing Some Beautiful Words
If I keep staring at the blog will the news change?
If I drink a bottle of wine, will it numb the pain?
If I take a hot shower, will it wash away the tears?
If I lay down to sleep will it halt the fear?
Thanks, Lenore
If I drink a bottle of wine, will it numb the pain?
If I take a hot shower, will it wash away the tears?
If I lay down to sleep will it halt the fear?
Thanks, Lenore
Tuesday, December 9, 2008
There has been a change in my treatment plan and today I had "Tarceva teaching." This treatment is in lieu of chemotherapy. Frankly, I didn't learn much about Tarceva that isn't found on the web. I will be seeing Dr. Dubovsky once a week and I am to report any breathing difficulties to his office immediately. I am left wondering how to determine if I am experiencing trouble breathing, since I have only one lung and it is diseased. I guess I will use my judgment. I will be doing baseline breathing tests at Dr. Scheinberg's office tomorrow, and will begin taking the Tarceva at bedtime tomorrow evening.
Thanks to all you blog commenters, stealth or otherwise.
Thanks to all you blog commenters, stealth or otherwise.
Thursday, December 4, 2008
This blog has become an important life force for me. The writing is cathartic, and it is an easy way for me to disseminate information to those I care about and who care about me. What I want to emphasize, however, is how important your comments are to me. I've hassled the stealth blog readers, you know who you are, who read but never write a comment. I have to say that it is those of you who put yourselves out there on the blog who helped me face the devastating news that the "stuff" in my right lung is diffuse malignant tumor. Dr. Scheinberg and his colleagues were shocked at the results of the pathology report. It is no reassurance that the pattern of disease in my right lung is highly unusual, but it's a fact, Jack.
I am not afraid. I am choosing to fight with the weapons available to me. I have been meeting and talking with doctors, and the current plan is to stay the course with the carboplatin and alimta. Of course, there could some adjustments to that plan. One of the other changes in the works for sure is to make more of each day. I have been spending most of my time alone, often in my bedroom, trying to heal my body. Instead, I am going to seek out more company and make more forays out into the world, even if it's just for lunch or a milkshake, or to the office to help out. Maybe even a movie. Ann Silver will help me set up the calendar on the lotsahelpinghands website.
Please know that your cards, letters, emails, visits and calls are also vitally important to me. There is just something about this blog that connects me to you, and keeps me moving forward.
Stay strong for me. I am staying strong for you.
I am not afraid. I am choosing to fight with the weapons available to me. I have been meeting and talking with doctors, and the current plan is to stay the course with the carboplatin and alimta. Of course, there could some adjustments to that plan. One of the other changes in the works for sure is to make more of each day. I have been spending most of my time alone, often in my bedroom, trying to heal my body. Instead, I am going to seek out more company and make more forays out into the world, even if it's just for lunch or a milkshake, or to the office to help out. Maybe even a movie. Ann Silver will help me set up the calendar on the lotsahelpinghands website.
Please know that your cards, letters, emails, visits and calls are also vitally important to me. There is just something about this blog that connects me to you, and keeps me moving forward.
Stay strong for me. I am staying strong for you.
Tuesday, December 2, 2008
Update and The Fun Never Stops
The river that is my life continues to be fraught with many big rapids.
Sunday drifted into Monday, and then to Tuesday. There was no great improvement in how I was feeling so I stuck close to home and to my bedroom. On Tuesday afternoon I wandered into another room for a change of scenery and began experiencing an unpleasant tightness and discomfort in my chest. After a round of calls to Dr. D's office, I headed to St. Jo's. Once there, I had to tell my story to the ER doc, which is becoming a problem as this story gets longer and longer. A flurry of calls between Dr. Scheinberg and me and the ER doc and Scheinberg resulted in a CT scan with contrast, something I was resistant to but ultimately relented. I am trying to be mindful of all the radiation that has bombarded my body, and besides, the contrast produces the sensation that you are wetting your pants. The ER doc's initial impression that I was suffering from pericarditis did not pan out, so I was sent home, which was good, but with my problem unresolved, which is bad.
On Wednesday, Scheinberg texted me that he and a radiologist were looking at my scan from the previous evening. And then nothing. No word from Scheinberg on the results. Scheinberg and I did not communicate again until Sunday night, so that left 4 days for me to be concerned. "Be concerned" is a tactful way of describing what I was feeling. Nevertheless, I enjoyed a delicious Thanksgiving lunch with my family, and a spur of the moment jaunt to a North Georgia cabin with John, Brent and his friend, again, for a change of scenery. Despite the rain that never let up, we had fun.
Sunday night Scheinberg and I reconnected and again, he would not reveal what was in the scan. He indicated that we would talk the next morning. "Be concerned" blossomed into something more alarming. Monday morning did not bring the reassurance I was desperately seeking; instead, Scheinberg asked me to come to his office asap. Once there, we talked about the difference between the scan that sent me to the hospital in October, and last week's scan. Apparently, whatever was detected in my right lung in October has gotten worse, and he had already scheduled a bronchoscopy for that afternoon. No discussion. No choices. I was free to do whatever I wanted except eat and drink until I reported to the hospital at 1:30 pm.
Endoscopic procedure No. 3. Four tries to get the IV in. Trouble coming out of the sedative, and violent coughing. The last nurse and I closed the place down at 6:30 and I left with an oxygen tank and more waiting for me when I got home. I was exhausted from the trauma of the day and I slept fine, covered in dachshund. It seemed like there were 10 in the bed last night, instead of 4.
Today I am finding that I need the oxygen to move around and if I am going to talk for more than a few minutes. Scheinberg is still claiming that whatever is in my right lung resembles an infectious disease, such as tuberculosis. That still seems unlikely to me but not to him so he repeated the TB test. Now I wait, patiently or not, for the results of the cultures.
I am too consumed with the task of putting one foot in front of the other to do anything more than a general thankful for all the support I have received from friends, family, colleagues and the medical community. I know you are there for me.
Love to all.
Sunday drifted into Monday, and then to Tuesday. There was no great improvement in how I was feeling so I stuck close to home and to my bedroom. On Tuesday afternoon I wandered into another room for a change of scenery and began experiencing an unpleasant tightness and discomfort in my chest. After a round of calls to Dr. D's office, I headed to St. Jo's. Once there, I had to tell my story to the ER doc, which is becoming a problem as this story gets longer and longer. A flurry of calls between Dr. Scheinberg and me and the ER doc and Scheinberg resulted in a CT scan with contrast, something I was resistant to but ultimately relented. I am trying to be mindful of all the radiation that has bombarded my body, and besides, the contrast produces the sensation that you are wetting your pants. The ER doc's initial impression that I was suffering from pericarditis did not pan out, so I was sent home, which was good, but with my problem unresolved, which is bad.
On Wednesday, Scheinberg texted me that he and a radiologist were looking at my scan from the previous evening. And then nothing. No word from Scheinberg on the results. Scheinberg and I did not communicate again until Sunday night, so that left 4 days for me to be concerned. "Be concerned" is a tactful way of describing what I was feeling. Nevertheless, I enjoyed a delicious Thanksgiving lunch with my family, and a spur of the moment jaunt to a North Georgia cabin with John, Brent and his friend, again, for a change of scenery. Despite the rain that never let up, we had fun.
Sunday night Scheinberg and I reconnected and again, he would not reveal what was in the scan. He indicated that we would talk the next morning. "Be concerned" blossomed into something more alarming. Monday morning did not bring the reassurance I was desperately seeking; instead, Scheinberg asked me to come to his office asap. Once there, we talked about the difference between the scan that sent me to the hospital in October, and last week's scan. Apparently, whatever was detected in my right lung in October has gotten worse, and he had already scheduled a bronchoscopy for that afternoon. No discussion. No choices. I was free to do whatever I wanted except eat and drink until I reported to the hospital at 1:30 pm.
Endoscopic procedure No. 3. Four tries to get the IV in. Trouble coming out of the sedative, and violent coughing. The last nurse and I closed the place down at 6:30 and I left with an oxygen tank and more waiting for me when I got home. I was exhausted from the trauma of the day and I slept fine, covered in dachshund. It seemed like there were 10 in the bed last night, instead of 4.
Today I am finding that I need the oxygen to move around and if I am going to talk for more than a few minutes. Scheinberg is still claiming that whatever is in my right lung resembles an infectious disease, such as tuberculosis. That still seems unlikely to me but not to him so he repeated the TB test. Now I wait, patiently or not, for the results of the cultures.
I am too consumed with the task of putting one foot in front of the other to do anything more than a general thankful for all the support I have received from friends, family, colleagues and the medical community. I know you are there for me.
Love to all.
Sunday, November 23, 2008
Round 2, No. 1
Thursday went well, and thank goodness for steroids. That got me through Friday. Different story this weekend. It was not unexpected that a body already compromised would feel the effects of chemo. And so that is the case. I am hunkered down with tylenol, ativan, and old movies, gathering my strength to take a bath.
It is gratifying to see the food calendar filling up. I am still fighting weight loss, so don't be afraid to splurge on those calories. There is a time and place for low fat and low carb, and this isn't it.
I'm gearing up to prepare my Thanksgiving thankfuls. There are definitely some different angles this year. If they're not too cheesey, I'll share them.
It is gratifying to see the food calendar filling up. I am still fighting weight loss, so don't be afraid to splurge on those calories. There is a time and place for low fat and low carb, and this isn't it.
I'm gearing up to prepare my Thanksgiving thankfuls. There are definitely some different angles this year. If they're not too cheesey, I'll share them.
Thursday, November 20, 2008
More Treatment
I got the green light to begin the new chemo regimen, and so it happened today.
Here is how my appointment with Dubovsky went:
Dubovsky: How do you feel? You look great.
EA: I feel about the same as last week, maybe a slight improvement. I started driving this week.
Dubovsky: Congratulations on driving. I know that's a big step for you. Any questions or concerns? You look great.
EA: I still cough all the time. I'll celebrate my "one solid year of coughing" anniversary next month.
Dubovsky: I'll talk to Scheinberg about an inhaler, you should consider putting in a whole-house humidifier, and cover your nose with a scarf when you go out. Any other questions or concerns? You look great.
EA: How are my counts? How is my vitamin D? Do I still need to take baby aspirin?
Dubovsky: Counts look great. Vitamin D is a little low but well within normal range. Stop baby aspirin on Tuesday. You look great. Chemo starts as soon as you can walk down the hall and get the IV in your arm.
Dr. D's dictation: Blah blah blah she looks great.
Boy, all I can say is his other patients must look like s--t.
Love to all.
Here is how my appointment with Dubovsky went:
Dubovsky: How do you feel? You look great.
EA: I feel about the same as last week, maybe a slight improvement. I started driving this week.
Dubovsky: Congratulations on driving. I know that's a big step for you. Any questions or concerns? You look great.
EA: I still cough all the time. I'll celebrate my "one solid year of coughing" anniversary next month.
Dubovsky: I'll talk to Scheinberg about an inhaler, you should consider putting in a whole-house humidifier, and cover your nose with a scarf when you go out. Any other questions or concerns? You look great.
EA: How are my counts? How is my vitamin D? Do I still need to take baby aspirin?
Dubovsky: Counts look great. Vitamin D is a little low but well within normal range. Stop baby aspirin on Tuesday. You look great. Chemo starts as soon as you can walk down the hall and get the IV in your arm.
Dr. D's dictation: Blah blah blah she looks great.
Boy, all I can say is his other patients must look like s--t.
Love to all.
Saturday, November 15, 2008
A week since my last posting. The days between reaped a step forward in my treatment plan and the start of pulmonary rehab.
I had a productive meeting with Dubovsky on Tuesday. We decided upon the treatment regimen. It will be full doses of carboplatin and alimta, beginning as soon as I am feeling okay. Alimta is a newer generation chemo, only takes 10 minutes to administer, and I am not expected to lose my hair. There will be a minimum of two doses, and up to four, depending on what I can tolerate. The doses will be 21 days apart. This combination is less toxic than what we had been contemplating, but stronger doses than what I have received previously. We are meeting this Thursday, and if I am up to it, treatment will start that day.
The rehab is basically cardio and weight training in a gym. My favorite activities in my favorite place. Right now, I require oxygen to participate, but the therapist, as do I, think it will be great for me.
The problem still is the "feeling okay" part. I just don't. There is the low grade fever that plagued me daily for 5 weeks, and that still comes and goes. It came to my attention that the drip drip cough cough that I have been experiencing could be as simple as a sinus infection. I started on some antibiotics yesterday, which already seem to be helping, albeit the fever persists. But I am waiting, patiently or not, for the day when I "feel good." That magic moment when I can smile spontaneously, eat without feeling like it's a chore, and drive a car.
Still putting one foot slowly in front of the other.
Elyse
I had a productive meeting with Dubovsky on Tuesday. We decided upon the treatment regimen. It will be full doses of carboplatin and alimta, beginning as soon as I am feeling okay. Alimta is a newer generation chemo, only takes 10 minutes to administer, and I am not expected to lose my hair. There will be a minimum of two doses, and up to four, depending on what I can tolerate. The doses will be 21 days apart. This combination is less toxic than what we had been contemplating, but stronger doses than what I have received previously. We are meeting this Thursday, and if I am up to it, treatment will start that day.
The rehab is basically cardio and weight training in a gym. My favorite activities in my favorite place. Right now, I require oxygen to participate, but the therapist, as do I, think it will be great for me.
The problem still is the "feeling okay" part. I just don't. There is the low grade fever that plagued me daily for 5 weeks, and that still comes and goes. It came to my attention that the drip drip cough cough that I have been experiencing could be as simple as a sinus infection. I started on some antibiotics yesterday, which already seem to be helping, albeit the fever persists. But I am waiting, patiently or not, for the day when I "feel good." That magic moment when I can smile spontaneously, eat without feeling like it's a chore, and drive a car.
Still putting one foot slowly in front of the other.
Elyse
Saturday, November 8, 2008
A Beautiful Morning!
Thank you to everyone who came out for the Lung Cancer Awareness run/walk today. It was wonderful to be with my family, old friends, new friends, work colleagues, survivors, out-of-towners, and even my doctors. Everyone was represented. Next year we will do it up big, with Team Dream t-shirts, and maybe even custom water bottles. We will be raising some serious awareness. In the meantime, congratulations to Brigette for placing second in her age bracket. She looked like a rocket streaking by.
As for me, I am dragging butt in a big way. I can't seem to get back to myself, or even close. Now that I have spoken with people who have had surgery to remove a lobe, not even their full lung, I am hearing that 3 months is a more realistic recuperation time. I spoke with someone today who had 2/3 of her right lung removed and subsequent chemotherapy and she said it took her a year to truly recover! And I am still facing more treatment. I am on the verge of making a decision on the chemotherapy regimen. That decision will likely come this week. In the meantime, I have signed up to begin a 24 session pulmonary rehab program. It is 2 1/2 hours a day, 3 days a week. Maybe pushing myself through this program will help. In the meantime, I have a difficult time getting the energy to leave the house, but I am bored to tears, literally. And...... not only did I miss a bunch of fun stuff tonight, they probably won't even be making fun of Sarah Palin on SNL.
I probably should have some cheese with this whine, but I guess I'm entitled.
As for me, I am dragging butt in a big way. I can't seem to get back to myself, or even close. Now that I have spoken with people who have had surgery to remove a lobe, not even their full lung, I am hearing that 3 months is a more realistic recuperation time. I spoke with someone today who had 2/3 of her right lung removed and subsequent chemotherapy and she said it took her a year to truly recover! And I am still facing more treatment. I am on the verge of making a decision on the chemotherapy regimen. That decision will likely come this week. In the meantime, I have signed up to begin a 24 session pulmonary rehab program. It is 2 1/2 hours a day, 3 days a week. Maybe pushing myself through this program will help. In the meantime, I have a difficult time getting the energy to leave the house, but I am bored to tears, literally. And...... not only did I miss a bunch of fun stuff tonight, they probably won't even be making fun of Sarah Palin on SNL.
I probably should have some cheese with this whine, but I guess I'm entitled.
Sunday, November 2, 2008
Television Debut
No Hollywood screen test for me, but the dogs looked great. In fact, when they heard themselves on TV, they all had to voice their opinions. Plus, the cool action shots reminded me of better days.
xoxoxoxoxo
xoxoxoxoxo
Saturday, November 1, 2008
We have been through years of life experiences together: high school, college and beyond; camp, including getting yelled at really bad by Larry for you-know-what, which was mostly my fault; broken hearts, marriages, and babies who are now teenagers; water skiing, snow skiing, and camping; losing some loved ones; many, many more good memories than bad. But now, instead of discussing the current recreational drug of choice, we are comparing chemotherapy regimens. Instead of comparing travel notes, we are assessing treatment centers. And talk of food is not about the latest restaurant, it is how to get those calories in when fighting nausea. We are reloading all our prayer guns, in between our disbelief, as we help Mindy embark on her own journey through and beyond cancer.
Sending my love, along with the love of so many others.
Elyse
Sending my love, along with the love of so many others.
Elyse
Wednesday, October 29, 2008
A Rousing Success and More
I think we can all agree that Joe Rosen notwithstanding, the Haiku Challenge was a success! I laughed, I cried, I was brought back to those days of yore, struggling to please the teacher by stringing together words that probably made no sense. 5,7,5. It is now etched in my mind forever, which shows how little else is going on there right now.
I am happy to report that I am out of bed. My fever persists, but I could not spend any more time in bed waiting for the fever to go away. So I am walking the driveway, which is as hard as it looks for a one-lunged post-surgical candidate, with fever, and scrounging around for things to keep me occupied and out of bed. There are still the MD appointments and other medical related tasks to keep up with, but I am really missing the action of life these days. Since there is more treatment on the horizon, and possibly some harsh stuff, I do not want to be too ambitious. Besides, the last time I got cocky I ended up back in the hospital. I'm still not up to driving, but don't be surprised if I show up at the office (I think I remember where it is), or call you for a lunch date.
Some of you may have gotten Ann Silver's email about my interview for People to People on WSB TV. It is going to air this Sunday morning at 6:30 am, so get your TIVO's programmed. I am "the new face of lung cancer." It's not a notoriety that I sought, but here I am. It also stars Dr. Scheinberg and Dash, Dot, Dewey and Sammy Davis, Jr. Jr.
There was another media event of note today. In the Living section of today's AJC there is a story about lung cancer that features Dr. Scheinberg and my surgeon, Dr. Moore. I think they are gearing up for the Lung Cancer Awareness event on November 8. Please oh please sign up to participate. The link is a mouse click away.
It looks like the latest round of prayers and good wishes is working. I am up and about, and thankful for every minute. I can't quite see the daylight yet, not until the next round of treatment is set and underway. Like those guys running for Prez, we're not there yet, so please don't let up.
xoxoxoxox
I am happy to report that I am out of bed. My fever persists, but I could not spend any more time in bed waiting for the fever to go away. So I am walking the driveway, which is as hard as it looks for a one-lunged post-surgical candidate, with fever, and scrounging around for things to keep me occupied and out of bed. There are still the MD appointments and other medical related tasks to keep up with, but I am really missing the action of life these days. Since there is more treatment on the horizon, and possibly some harsh stuff, I do not want to be too ambitious. Besides, the last time I got cocky I ended up back in the hospital. I'm still not up to driving, but don't be surprised if I show up at the office (I think I remember where it is), or call you for a lunch date.
Some of you may have gotten Ann Silver's email about my interview for People to People on WSB TV. It is going to air this Sunday morning at 6:30 am, so get your TIVO's programmed. I am "the new face of lung cancer." It's not a notoriety that I sought, but here I am. It also stars Dr. Scheinberg and Dash, Dot, Dewey and Sammy Davis, Jr. Jr.
There was another media event of note today. In the Living section of today's AJC there is a story about lung cancer that features Dr. Scheinberg and my surgeon, Dr. Moore. I think they are gearing up for the Lung Cancer Awareness event on November 8. Please oh please sign up to participate. The link is a mouse click away.
It looks like the latest round of prayers and good wishes is working. I am up and about, and thankful for every minute. I can't quite see the daylight yet, not until the next round of treatment is set and underway. Like those guys running for Prez, we're not there yet, so please don't let up.
xoxoxoxox
Saturday, October 25, 2008
Neil's Haiku Challenge
A little black nose
Peeking out from the covers
A dachshund is close
The bright sun shines in
It fills the room with color
And with a warm glow
The words are dancing
The pages move to and fro
A good book brings life.
His blue eyes sparkle
It was a good day he says
A sweet teenager
I used to love food
Now I have to eat to live
Curse the mean disease
Anyone up to the Haiku challenge? Anyone? Anyone?
C'mon people. I'm looking for some creativity and a little fun here.
And don't forget the lung cancer awareness event on November 8. Please join my family and friends who have already signed up. There is an actual, working link to the right for information and to sign up.
Peeking out from the covers
A dachshund is close
The bright sun shines in
It fills the room with color
And with a warm glow
The words are dancing
The pages move to and fro
A good book brings life.
His blue eyes sparkle
It was a good day he says
A sweet teenager
I used to love food
Now I have to eat to live
Curse the mean disease
Anyone up to the Haiku challenge? Anyone? Anyone?
C'mon people. I'm looking for some creativity and a little fun here.
And don't forget the lung cancer awareness event on November 8. Please join my family and friends who have already signed up. There is an actual, working link to the right for information and to sign up.
Thursday, October 23, 2008
Monday, October 20, 2008
To blog or not to blog. That is the question.
I am caught in a bind. If I indicate here how I am feeling, then I am afraid you readers will worry, but not posting is apparently having the same effect, says my telephone.
I am not at all feeling well, still troubled by this fever. No doctors will commit to a diagnosis, sticking by the "looks good on paper." I will see the infectious disease MD on Wednesday, so I may know more then.
In the meantime, I mostly stay in bed, wander outside in the sun when I am up to it, and hope that the fever goes away. Soon.
Thank you everyone for your concern.
I am caught in a bind. If I indicate here how I am feeling, then I am afraid you readers will worry, but not posting is apparently having the same effect, says my telephone.
I am not at all feeling well, still troubled by this fever. No doctors will commit to a diagnosis, sticking by the "looks good on paper." I will see the infectious disease MD on Wednesday, so I may know more then.
In the meantime, I mostly stay in bed, wander outside in the sun when I am up to it, and hope that the fever goes away. Soon.
Thank you everyone for your concern.
Wednesday, October 15, 2008
Looks Good on Paper
I can easily understand the confusion. It makes sense to think that I was released from the hospital because I was cured of whatever brought me there. That is not the case, however. As of Monday evening, the cause of the fever had not been determined, but there was no reason to think I would be any worse off taking antibiotics at home. Plus, I may have insisted on the release :-) So home I went, armed with Levaquin and the Dachshund Home Remedy. Unfortunately, I have not yet gotten relief, and my fever comes more than it goes.
This morning I had an appointment with Dr. Scheinberg. He carefully reviewed the results of the recent blood and other tests and was happy to inform me that I look good on paper. I don't know what all that stuff is, white blood counts, etc., etc., but it would appear as if my recovery was progressing nicely. As if. The only test results that are still outstanding are what he calls the "zebras," the really rare stuff. But I'm feeling lousy. So lousy, in fact, that I even forgot to make a follow up appointment with the infectious disease doctor when I got home. John is now working on that and I am doing virtually nothing, trying to give my body its best shot at vanquishing this latest intruder.
I do have a favor to ask. On Saturday, November 8, Dr. Scheinberg's group, among others, is sponsoring a one mile walk and 5K fun run at The Concourse for lung cancer awareness. I know that some of you are busy that day (Julie, Ruth, David), but I would be honored if you would participate, and/or spread the word. It looks like a great event for kids, too. Here is the link: http://www.stjosephsatlanta.org/cancer_center/events/lungcancerwalk/home.html
Love to all.
Elyse
This morning I had an appointment with Dr. Scheinberg. He carefully reviewed the results of the recent blood and other tests and was happy to inform me that I look good on paper. I don't know what all that stuff is, white blood counts, etc., etc., but it would appear as if my recovery was progressing nicely. As if. The only test results that are still outstanding are what he calls the "zebras," the really rare stuff. But I'm feeling lousy. So lousy, in fact, that I even forgot to make a follow up appointment with the infectious disease doctor when I got home. John is now working on that and I am doing virtually nothing, trying to give my body its best shot at vanquishing this latest intruder.
I do have a favor to ask. On Saturday, November 8, Dr. Scheinberg's group, among others, is sponsoring a one mile walk and 5K fun run at The Concourse for lung cancer awareness. I know that some of you are busy that day (Julie, Ruth, David), but I would be honored if you would participate, and/or spread the word. It looks like a great event for kids, too. Here is the link: http://www.stjosephsatlanta.org/cancer_center/events/lungcancerwalk/home.html
Love to all.
Elyse
Monday, October 13, 2008
Sunday, October 12, 2008
Room 650, after 40 hours
The first things you notice are that it is small and painted industrial yellow. Not a pleasing color but not offensive enough to really matter. There is the usual sink and WC with shower. There are some odd angles and then you notice that there are two doors. Once ensconced, the main door is sealed with tape and nurses and visitors enter through an anteroom to get washed, gloved, masked, and in some cases robed. Believe it or not, this is not for my protection. I am being tested for every known infectious disease, from TB to hanta virus. So far, no signs of TB, or any other dangerous infection except a modicum of staph, for which I have already received a single heavy dose of a medicine that I cannot pronounce. Nondescript linoleum, a hole in the wall from a door handle, shelves, television, telephone, clock, medical equipment, two chairs, bed, and a window overlooking a parking lot and some Perimeter style office buildings complete the scene. The smell, which started out as inoffensive, is working its way to the other side. I am wondering how to fix this without violating any rules.
I am receiving very little treatment, or attention from doctors and nurses. My fever continues, so I wait, usually patiently, as this chapter continues to unfold. I am certainly not going home today, and I would not take any bets on tomorrow.
I am receiving very little treatment, or attention from doctors and nurses. My fever continues, so I wait, usually patiently, as this chapter continues to unfold. I am certainly not going home today, and I would not take any bets on tomorrow.
Friday, October 10, 2008
Hello from Room 650
A week that started with the promise of a smooth recovery began going south on Tuesday and never recovered. In addition to the expected post-surgical issues, I have been struggling with a fever. After spending this afternoon at the ER at St. Joseph's, I was admitted to the hospital this evening. Perhaps you can hear the drip drip drip of the antibiotics flowing into the IV tube. I expect that to continue through at least tomorrow. Please know that I am resting comfortably in my luxurious suite in the respiratory isolation wing, and I will be in touch.
Thursday, October 9, 2008
Contemplating
Today is Yom Kippur, the most somber, most holy day in the Jewish religion. It is the Day of Atonement, when, for 24 hours, Jews seek forgiveness for their sins of the past year, and as the holiday closes at sundown tonight, make their final plea to be inscribed in the Book of Life. To make sure that there are no distractions from this solemn task, and maybe as a bit of punishment because none of us are without sin, Jews fast from sundown of the evening before, to sundown today.
I am thankful for religious guidance that instructs me to be a good person every day; most religions do. But I am especially thankful for the opportunity, once a year, to contemplate what kind of person I have been, and what kind of person I want to be. And absolution does not come at a distance; prayers can only do so much. Ultimately, if the sin is against a person, as opposed to the environment for instance, one must seek forgiveness directly from that person. It is a simple dynamic, but oh, so difficult. Think about it. First one must admit wrongdoing; and then one must seek out the victim of that wrong and ask to be pardoned. Again, I am awed by the simplicity, yet difficulty of this task. But for me, it is the simple human communications that seem the most challenging, but most important in my life.
Before now, I gave fleeting thought to the Book of Life. I took for granted my excellent health, good fortune, and believed that the other wonderful trappings of my life were there because I worked hard for them. But that has all changed. All over the world, the words "who shall live and who shall die?" are an integral part of Yom Kippur services. I now tremble at this momentous determination; no matter how this judgment is made, or who makes it, at this time next year I wonder if will I be joining my fellow Jews in seeking atonement for the sins of another year past? Seeking to again be inscribed in that Book of Life?
My road to recovery from surgery has hit some bumps and I am struggling with a fever, and finding pain meds that work well enough without debilitating side effects. The services at my synagogue stream online, so I am off to pray remotely. Gotta love technology.
No matter what your religious beliefs, wishing that all of you are inscribed in the Book of Life, and that you each find peace within your families, friends and communities.
I am thankful for religious guidance that instructs me to be a good person every day; most religions do. But I am especially thankful for the opportunity, once a year, to contemplate what kind of person I have been, and what kind of person I want to be. And absolution does not come at a distance; prayers can only do so much. Ultimately, if the sin is against a person, as opposed to the environment for instance, one must seek forgiveness directly from that person. It is a simple dynamic, but oh, so difficult. Think about it. First one must admit wrongdoing; and then one must seek out the victim of that wrong and ask to be pardoned. Again, I am awed by the simplicity, yet difficulty of this task. But for me, it is the simple human communications that seem the most challenging, but most important in my life.
Before now, I gave fleeting thought to the Book of Life. I took for granted my excellent health, good fortune, and believed that the other wonderful trappings of my life were there because I worked hard for them. But that has all changed. All over the world, the words "who shall live and who shall die?" are an integral part of Yom Kippur services. I now tremble at this momentous determination; no matter how this judgment is made, or who makes it, at this time next year I wonder if will I be joining my fellow Jews in seeking atonement for the sins of another year past? Seeking to again be inscribed in that Book of Life?
My road to recovery from surgery has hit some bumps and I am struggling with a fever, and finding pain meds that work well enough without debilitating side effects. The services at my synagogue stream online, so I am off to pray remotely. Gotta love technology.
No matter what your religious beliefs, wishing that all of you are inscribed in the Book of Life, and that you each find peace within your families, friends and communities.
Saturday, October 4, 2008
This has been a most peaceful week here in the Aussenberg/Denys household. Protected from the political and economic turmoil swirling around us, inside these four walls (and many windows) we are sleeping well, eating healthy and delicious food, and enjoying this stunning weather, even if it means just looking out the window.
Today I am on a mission, however. Armed with coupons and a fabric sample, I am hunting for sheets. We have a new bed and it's time to change the sheets, so I will need a second set of California King sheets. My reconnaissance missions indicate that I will find what I am looking for at Bed, Bath and Beyond. I am confident enough of my chances for success, so I think this mission has just the right degree of difficulty and challenge. I will provide a full report after the mission is complete.
Today I am on a mission, however. Armed with coupons and a fabric sample, I am hunting for sheets. We have a new bed and it's time to change the sheets, so I will need a second set of California King sheets. My reconnaissance missions indicate that I will find what I am looking for at Bed, Bath and Beyond. I am confident enough of my chances for success, so I think this mission has just the right degree of difficulty and challenge. I will provide a full report after the mission is complete.
Tuesday, September 30, 2008
Home, Again
The dachshunds are grinning from ear to ear John is reading Brent is doing homework and I am arranging pillows on the bed. I will sink into them and close my eyes and give thanks. For doctors, nurses, family, friends, the gift of life.
Sweetest dreams.
Sweetest dreams.
Monday, September 29, 2008
For the Nurses
I think I always knew that nursing was a calling; that it matched a special person to a special job. As a patient in intensive care for the first time, and an extended time, I have seen the knowledge, care, and devotion brought to people in need. Being on the receiving end of this care has become a significant part of my own experience. It reminds me of the magic of giving and receiving love. For much of this hospital stay, I have been almost entirely dependent on the assistance of others. I will never forget my night nurse for the first three nights; I can see her almost floating around during the quiet hours in my room that was not really dark but not really light. In between checking vital signs and administering medications, she fluffed my pillows just so, knew when I needed water, a change of gown, a cool wash cloth on my face.
My own recovery is proceeding well. Thankfully, you probably can't tell that there is a 7 inch wound where my ribs were separated and a vital organ permanently removed from it's home of many years. Once the blood pressure, blood sugar and bodily function issues are resolved, I will be back in the arms of my dachshunds, I mean family.
Sundown tonight brings the beginning of the Days of Awe for those who observe. Regardless of your religious preference, I hope we are all inscribed in the Book of Life, and that we will be looking back in the fall of 2009 at a year full of good health and other promising things.
L'Shana Tova.
My own recovery is proceeding well. Thankfully, you probably can't tell that there is a 7 inch wound where my ribs were separated and a vital organ permanently removed from it's home of many years. Once the blood pressure, blood sugar and bodily function issues are resolved, I will be back in the arms of my dachshunds, I mean family.
Sundown tonight brings the beginning of the Days of Awe for those who observe. Regardless of your religious preference, I hope we are all inscribed in the Book of Life, and that we will be looking back in the fall of 2009 at a year full of good health and other promising things.
L'Shana Tova.
Sunday, September 28, 2008
I had another good day yesterday. I was in the chair and up walking around for a good part of the day. But while I think that visitors are a good thing, the powers that be here at St. Jo's do not agree. Visiting hours are limited and the nurses can be strict in their enforcement of this rule. Hopefully I will be going home tomorrow anyway.
The hospital stay has not been as unpleasant as I anticipated. The nurses and other techs range from OK to great. The bottom line, which will come as no surprise to anyone, is that I don't like to feel helpless. I have not yet been able to get off the bed unassisted. Today's wonderful nurse, Jo, has been on my case all day complaining that I am trying to do too much and not taking enough naps. The pain that I have been experiencing since this morning cannot be ignored. Recreational drugs notwithstanding, my past experience with pain killers includes tylenol and extra strength tylenol, so the stuff they want to give me is way out of my league. So I am learning to heed Jo and Jane's, mantra: stay ahead of the pain.
I am glad that I added a few extra pounds to my frame before the surgery. My taste for hospital food has not improved with my stay. I am mindful as always of what I need to eat, but am reduced to simply eating enough calories to sustain me. I am surprised that Jo has not yelled at me about my food intake yet. If she does, I will have to resort to the tried and true kid tricks like moving the food around on the plate or feeding it to the dog. (I wish!) If all else fails, then I will resume the milkshake diet. Arby's Jamocha and Chick-Fil-A chocolate milkshakes have gotten me by before and I am sure that I can count on them again.
Here come the dinner trays. Now where can I hide that Salisbury Steak?
The hospital stay has not been as unpleasant as I anticipated. The nurses and other techs range from OK to great. The bottom line, which will come as no surprise to anyone, is that I don't like to feel helpless. I have not yet been able to get off the bed unassisted. Today's wonderful nurse, Jo, has been on my case all day complaining that I am trying to do too much and not taking enough naps. The pain that I have been experiencing since this morning cannot be ignored. Recreational drugs notwithstanding, my past experience with pain killers includes tylenol and extra strength tylenol, so the stuff they want to give me is way out of my league. So I am learning to heed Jo and Jane's, mantra: stay ahead of the pain.
I am glad that I added a few extra pounds to my frame before the surgery. My taste for hospital food has not improved with my stay. I am mindful as always of what I need to eat, but am reduced to simply eating enough calories to sustain me. I am surprised that Jo has not yelled at me about my food intake yet. If she does, I will have to resort to the tried and true kid tricks like moving the food around on the plate or feeding it to the dog. (I wish!) If all else fails, then I will resume the milkshake diet. Arby's Jamocha and Chick-Fil-A chocolate milkshakes have gotten me by before and I am sure that I can count on them again.
Here come the dinner trays. Now where can I hide that Salisbury Steak?
Saturday, September 27, 2008
My Kingdom for a Bath
My kingdom for a bath. I want to clean up to welcome today's visitors. I have been trying since 5am to accomplish this simple, yet involved task.
I had a great day yesterday, talking, walking, and sitting up. Sleep came easily courtesy of last night's Sedate Debate of 08 (snappy catch phrase belongs to cousin Kathy). Worked better than valium chased by Baileys on the rocks. Doesn't matter anyway, because I've already cast my ballot.
I didn't have a clue how it would feel to lose a lung. Well. it feels darn good to get an organ riddled with disease out of my body. I have no sensation of loss in my chest. I am breathing easier, and my cough is virtually nonexistent except for clearing my right lung of the anesthesia.
I am definitely on the mend.
I had a great day yesterday, talking, walking, and sitting up. Sleep came easily courtesy of last night's Sedate Debate of 08 (snappy catch phrase belongs to cousin Kathy). Worked better than valium chased by Baileys on the rocks. Doesn't matter anyway, because I've already cast my ballot.
I didn't have a clue how it would feel to lose a lung. Well. it feels darn good to get an organ riddled with disease out of my body. I have no sensation of loss in my chest. I am breathing easier, and my cough is virtually nonexistent except for clearing my right lung of the anesthesia.
I am definitely on the mend.
Friday, September 26, 2008
Good Morning!
Good morning campers! It's time to get out of bed, shower and inhale that first cup of coffee!
I slept well and have bathed with help from my wonderful nurse. It's a little on the early side, but it feels good to be sitting up, hunting and pecking away on Brent's laptop.
All those prayers must have worked, because not only did I get the surgical result that I was looking for, the recovery is progressing nicely. Of course, I still have an epidural that keeps the pain medicine flowing 24/7.
I have not been eating much. Yesterday I had fruit for lunch and then fruit and oatmeal for dinner. Hospital food is not for me. John will have to be a little creative to nourish me.
I will report back on my progress later.
TTFN
I slept well and have bathed with help from my wonderful nurse. It's a little on the early side, but it feels good to be sitting up, hunting and pecking away on Brent's laptop.
All those prayers must have worked, because not only did I get the surgical result that I was looking for, the recovery is progressing nicely. Of course, I still have an epidural that keeps the pain medicine flowing 24/7.
I have not been eating much. Yesterday I had fruit for lunch and then fruit and oatmeal for dinner. Hospital food is not for me. John will have to be a little creative to nourish me.
I will report back on my progress later.
TTFN
Thursday, September 25, 2008
day after
this will probably be my last chance at the blog,the word maestro will hopefully be able to take over.
I would like to thank everyone who helped yesterday by sitting at the hospital or sending their words of encouragement.
Elyse was moved to the CICU unit room 276 yesterday at about 4:30 and gave the best smile and hug ever!!!!!!
she will probably be in ICU for 2 or 3 days.
the visitation is scheduled as follows: 2 visitors at a time at:
6:00am to 6:30,8:00 to 8:30, 10:30 to 11:00 12:00noon to 12:30, 2:00 to2:30, 4:00 to 4:30, 6:00 to 6:30, and 8:00 to 9:00.
please respect that the visits are short and are scheduled around the work that must go on in the ICU.
again, thank you everyone for being with us in your help and prayers,
love you all J.D.
I would like to thank everyone who helped yesterday by sitting at the hospital or sending their words of encouragement.
Elyse was moved to the CICU unit room 276 yesterday at about 4:30 and gave the best smile and hug ever!!!!!!
she will probably be in ICU for 2 or 3 days.
the visitation is scheduled as follows: 2 visitors at a time at:
6:00am to 6:30,8:00 to 8:30, 10:30 to 11:00 12:00noon to 12:30, 2:00 to2:30, 4:00 to 4:30, 6:00 to 6:30, and 8:00 to 9:00.
please respect that the visits are short and are scheduled around the work that must go on in the ICU.
again, thank you everyone for being with us in your help and prayers,
love you all J.D.
Wednesday, September 24, 2008
out of surgery
Elyse is out of surgery at 12:00 and everything is good!!!!!!!!!!!!
she will take about 2 hours to wake-up and then to ICU for a day.
I will let you know when and where visiting my begin.
thanks for all the support and prayers!!!!!!!!!!!!!!!!
love you all J.D.
she will take about 2 hours to wake-up and then to ICU for a day.
I will let you know when and where visiting my begin.
thanks for all the support and prayers!!!!!!!!!!!!!!!!
love you all J.D.
Hospital update
Elyse is still in surgery. Biopsy results came up negative for metastasis outside the lung, so they are removing the lung, which is the best possible outcome for Elyse. We are ready to begin a full recovery.
JD, 11:00 am
JD, 11:00 am
at the hospital
it is 8:30 in the morning and mom Roz, aunt Arlene, and I (John) are in the waiting room. Elyse went into the room for her surgery about a half hour ago. she was very calm and looked fabulus as usual in her little blue patterned gown and a brave smile. I will be here waiting till the doctor comes out and lets us know any news. my cell # is 678-859-1949, call if you want. the doctor thinks it will be around 12:00 to 12:30 when things are done. I will update later.
we love you all, J.D.
we love you all, J.D.
Tuesday, September 23, 2008
Calm
On this beautiful night, the family went for a walk, dogs outnumbering humans.
I have done what I could, said what I wanted to say......it's time to let go and let it flow as it is meant to.....
Peace
I have done what I could, said what I wanted to say......it's time to let go and let it flow as it is meant to.....
Peace
Friday, September 19, 2008
No Fear
In addition to the lesson about playing the hand that is dealt, the other significant experience that has changed me is related to fear. Fear is paralyzing. I remember the days, one in particular, when I could not eat. It was not the disease that prevented me from eating; it was the panic that would not be quelled. It was a force so powerful that I could have died from it. Fear takes up a lot of space. It is all-consuming, leaving room for nothing else. But when fear is absent, the being is allowed to be. The being can then gather information, weigh options, make decisions. The being can give and receive love; take a walk; enjoy a milkshake.
I cannot recall the exact moment that I learned that I could manage my fear. I will not claim that I am never afraid. Fear will creep back in during the middle of the night, or strike like lightening with the delivery of unpleasant news. I have, however, contemplated how I have been able to develop the skills to cope with fear. I was not able to do it alone. I doubt that most of us could. The key to my success is the bond that I have with you. Yes, you. This is my journey, and my journey, alone. But you are there to push me off a rock when my raft gets stuck, patch the holes in the raft, and bail like heck when I take on water. You are not just an observer watching as I float by.
As I prepare myself mentally and physically for next week's possibilities, it is not fear of death that haunts me. I am not afraid. I will follow in the footsteps of my father. He faced his challenges, and ultimately his mortality with grace and humility. I will honor his memory by continuing to do my best to emulate him. What motivates this being is the desire to live. I have a son to raise, and work to do within my profession and in my community. And I truly enjoy the gift of living each day. And dachshunds. I love dachshunds.
I still haven’t entirely resolved the faith issue. It’s there; it’s just not clearly defined. Nevertheless, on the eve of a venture full of unknowns, regardless of where your religion, spirituality and/or faith lie, I ask for your prayers.
I cannot recall the exact moment that I learned that I could manage my fear. I will not claim that I am never afraid. Fear will creep back in during the middle of the night, or strike like lightening with the delivery of unpleasant news. I have, however, contemplated how I have been able to develop the skills to cope with fear. I was not able to do it alone. I doubt that most of us could. The key to my success is the bond that I have with you. Yes, you. This is my journey, and my journey, alone. But you are there to push me off a rock when my raft gets stuck, patch the holes in the raft, and bail like heck when I take on water. You are not just an observer watching as I float by.
As I prepare myself mentally and physically for next week's possibilities, it is not fear of death that haunts me. I am not afraid. I will follow in the footsteps of my father. He faced his challenges, and ultimately his mortality with grace and humility. I will honor his memory by continuing to do my best to emulate him. What motivates this being is the desire to live. I have a son to raise, and work to do within my profession and in my community. And I truly enjoy the gift of living each day. And dachshunds. I love dachshunds.
I still haven’t entirely resolved the faith issue. It’s there; it’s just not clearly defined. Nevertheless, on the eve of a venture full of unknowns, regardless of where your religion, spirituality and/or faith lie, I ask for your prayers.
Tuesday, September 16, 2008
Full of Thanks
I am feeling particularly full of thanks today.
I had a wonderful celebration marking 53 years. That's right. I'm 53. Most of you know that. If you didn't, then now you do. I guess I'm grateful in a small way for the gift of looking young. I hope to also feel young again some day.
I am grateful for the gift of a smooth transition to high school for Brent. I spent a not insignificant amount of time and energy working for this. I cannot even claim that my efforts paid off. Public school was his first, and only choice. And much to my surprise, and great delight, he is thriving.
And in a reverse psychology sort of way, the coincidence of two inappropriate encounters today reminded me how blessed I am. The first was an unpleasant comment from a litigant in a 1991 case. She helped reinforce the primary lesson that I have learned from my present challenge; that we are all dealt hands that we don't like. It's what we do with them that counts. (The fact that this woman showed poor judgment today reminds of exactly why she did not get what she thought she deserved in 1991). And to the gentleman who told me to "call him after this thing was all over" so we could get together, thank you for illuminating what is special about my life right now. It was easy for me to turn away from your remark and feel the immediate embrace of my supporters. I am fortunate to be able to count on so many to provide what it takes to keep going. It is a strength I feel every hour, every day.
So I feel the need to pause and give thanks to everyone who cooks, writes, emails, blogs, visits, hugs, donates, prays, walks, drives, cycles, treats and works for me. You are getting me through this adventure cum nightmare, every single one of you.
Sending all the thanks I can muster,
Elyse
I had a wonderful celebration marking 53 years. That's right. I'm 53. Most of you know that. If you didn't, then now you do. I guess I'm grateful in a small way for the gift of looking young. I hope to also feel young again some day.
I am grateful for the gift of a smooth transition to high school for Brent. I spent a not insignificant amount of time and energy working for this. I cannot even claim that my efforts paid off. Public school was his first, and only choice. And much to my surprise, and great delight, he is thriving.
And in a reverse psychology sort of way, the coincidence of two inappropriate encounters today reminded me how blessed I am. The first was an unpleasant comment from a litigant in a 1991 case. She helped reinforce the primary lesson that I have learned from my present challenge; that we are all dealt hands that we don't like. It's what we do with them that counts. (The fact that this woman showed poor judgment today reminds of exactly why she did not get what she thought she deserved in 1991). And to the gentleman who told me to "call him after this thing was all over" so we could get together, thank you for illuminating what is special about my life right now. It was easy for me to turn away from your remark and feel the immediate embrace of my supporters. I am fortunate to be able to count on so many to provide what it takes to keep going. It is a strength I feel every hour, every day.
So I feel the need to pause and give thanks to everyone who cooks, writes, emails, blogs, visits, hugs, donates, prays, walks, drives, cycles, treats and works for me. You are getting me through this adventure cum nightmare, every single one of you.
Sending all the thanks I can muster,
Elyse
Saturday, September 13, 2008
Quiet Celebration
We're off to a quiet place to sing happy birthday to each other and mark 17 years of marriage. No more adventures planned, just a peaceful getaway amidst the storm.
Speaking of storms, I anxiously watched Hurricane Ike crashing ashore in Galveston last night, and woke up to the images of a battered southeast Texas this morning. To my Houston family and friends, I've been thinking of you and wishing for your safe passage through the tempest.
Coincidentally, this week marks the anniversary of the storm that John and I rode out on September 11, 1992, on the island of Kauai. Rita Bennington, John, an old pit bull, an Australian Shepherd (beloved Aggipah of blessed memory), a cat and me spent six hours in a hallway and then bathroom drinking Fuzzy Navels and pretending we were not afraid for our lives. The aftermath of the storm brought days during which there was little or no communication intra-island, and no means whatsoever to communicate with anyone off the island. I have personally witnessed the devastation wrought by Mother Nature's fury, and would not willingly put myself in harm's way again. I have my own version, but this is what Wikipedia says about Hurricane Iniki: http://en.wikipedia.org/wiki/Hurricane_Iniki
There are also photos that paint the picture of destruction at the website below. We were in Princeville: http://www.hawaiimovietour.com/iniki2.htm
This week's brightest moment? The words of my son.
Speaking of storms, I anxiously watched Hurricane Ike crashing ashore in Galveston last night, and woke up to the images of a battered southeast Texas this morning. To my Houston family and friends, I've been thinking of you and wishing for your safe passage through the tempest.
Coincidentally, this week marks the anniversary of the storm that John and I rode out on September 11, 1992, on the island of Kauai. Rita Bennington, John, an old pit bull, an Australian Shepherd (beloved Aggipah of blessed memory), a cat and me spent six hours in a hallway and then bathroom drinking Fuzzy Navels and pretending we were not afraid for our lives. The aftermath of the storm brought days during which there was little or no communication intra-island, and no means whatsoever to communicate with anyone off the island. I have personally witnessed the devastation wrought by Mother Nature's fury, and would not willingly put myself in harm's way again. I have my own version, but this is what Wikipedia says about Hurricane Iniki: http://en.wikipedia.org/wiki/Hurricane_Iniki
There are also photos that paint the picture of destruction at the website below. We were in Princeville: http://www.hawaiimovietour.com/iniki2.htm
This week's brightest moment? The words of my son.
Wednesday, September 10, 2008
Tuesday, September 9, 2008
Getting the House in Order
Are you prepared if you or your significant other unexpectedly dies? Or worse, lapses into a coma? Do you have a Will, Living Will, Durable Power of Attorney for Healthcare and Financial Power of Attorney? Do you have adequate life insurance? And if you do, do you know where these important documents and policies are? I am relieved that John and I have the financial documents we need. However, we have not followed through with all the estate planning advice and made the appropriate changes on the titles to property, financial accounts and beneficiaries. And whoops, 2007 income tax returns have not been filed. And what about the harder questions? The ones you really, really don't want to pose. What would life look like without you? How would your family cope?
None of the above relieves me of my usual round of phone calls to doctors and other health care providers to keep up with my eligibility for future clinical trials, to follow up with insurance issues, and to address other matters that come up on a daily basis. And most importantly, for me anyway, to do whatever it is I need to do to survive against overwhelming odds.
Since the end of May, I have not been able to return to a predictable daily routine. That has not changed even as treatment has ceased. Since May, I have been relegated to approaching each day, each hour even, as it comes. The few plans that I do make come with the condition, spoken or unspoken, that I may have to cancel due to a conflicting appointment, or if I am just not up for it, which is often. Thankfully, with few exceptions, my friends and colleagues have been wonderfully understanding.
Today I am grateful for another day, another week, to put one foot in front of the other.
Love to all.
None of the above relieves me of my usual round of phone calls to doctors and other health care providers to keep up with my eligibility for future clinical trials, to follow up with insurance issues, and to address other matters that come up on a daily basis. And most importantly, for me anyway, to do whatever it is I need to do to survive against overwhelming odds.
Since the end of May, I have not been able to return to a predictable daily routine. That has not changed even as treatment has ceased. Since May, I have been relegated to approaching each day, each hour even, as it comes. The few plans that I do make come with the condition, spoken or unspoken, that I may have to cancel due to a conflicting appointment, or if I am just not up for it, which is often. Thankfully, with few exceptions, my friends and colleagues have been wonderfully understanding.
Today I am grateful for another day, another week, to put one foot in front of the other.
Love to all.
Friday, September 5, 2008
It's a Date (Reprise)
Remember way back when in June that I was supposed to have surgery? Hence the lunggone moniker? Well, we've come full circle, in a way. On September 24th I will again go under general anesthesia and John Moore will again biopsy lymph nodes in my chest, this time by frozen section, and if there is no cancer present in the nodes then he will remove my left lung. A pneumonectomy. This next step brings with it a new level of hope, that surgery could, in fact, be a cure. There is no guarantee, of course, and there are serious risks involved with this surgery. There is also the possibility, a not insignificant one, that the cancer outside of the primary tumor has not been eradicated by the treatment that I have had so far, and I will wake up to two lungs and more chemotherapy and radiation, and the same dismal statistics I have been living(?) under for the past 3+ months. Friends, that is a frightening prospect. I have been read The Riot Act about statistics but it's my life not yours so leave that topic alone for now. It is what it is.
But I have hope. I love hope. I can feel it. I feel positive and ready and I want to be cured. I want my life back. I missed the summer, I will miss the fall, but I don't think it is unrealistic to be up and about for winter. I probably won't ski, but what the heck, maybe I can handle Sugar Mountain.
So reload those prayer guns. You have all been so wonderful keeping me going on this still inconceivable journey.
Love and thanks,
Elyse
But I have hope. I love hope. I can feel it. I feel positive and ready and I want to be cured. I want my life back. I missed the summer, I will miss the fall, but I don't think it is unrealistic to be up and about for winter. I probably won't ski, but what the heck, maybe I can handle Sugar Mountain.
So reload those prayer guns. You have all been so wonderful keeping me going on this still inconceivable journey.
Love and thanks,
Elyse
Thursday, September 4, 2008
Stand Up 2 Cancer
Tomorrow night at 8:00 pm the three television networks, ABC, NBC, and CBS (remember them?) are airing a star-studded show aimed at both providing information about and accelerating fund raising for cancer research, particularly novel therapies that are in their infancy but have promising results. Cancer research is an issue that has become near and dear to my heart, and I would ask that you let this program touch you in some way, however small. If television is not your thing (it is certainly not mine), there is also a website associated with this event (www.standup2cancer.org). It is not necessary to donate money; there is a sample letter to send to your representatives in Congress as well as a host of information to help get educated on other ways to provide support.
Please make some time for this event. Unfortunately, the lives of too many people depend upon it.
xoxoxoxox
Please make some time for this event. Unfortunately, the lives of too many people depend upon it.
xoxoxoxox
Monday, September 1, 2008
Perfection and Farewell, Summer
If a bad day on the river is better than a good day at work, then a good day on the river must be, well, perfect. If there is such a thing as perfection, then that is it for me. From the gentle Etowah and Chestatee rivers to the Chattahoochee, Cartecay, Hiwassee, Chattooga, Tuckasegee, Ocoee and the Nantahala; from the Middle Fork of the Salmon in Idaho to the bashing white water of the Arkansas River in Colorado, I can think of no better way to stimulate my senses, and to touch, sometimes, my soul. It doesn't take a complicated set of rapids or an extra-special boat; it's as simple as breathing the air, looking at the natural surroundings, and as Burton says, finding the V's.
Did I enjoy my weekend? You bet.
Today is Labor Day, the day we traditionally bid farewell to summer. I have always found summer to be my favorite season. It's not that I don't like the other seasons; they all have their charms. But I particularly enjoy summer sports, summer fruit, the long days, the beach, a good suntan, and for the first 20 or so years, summer meant no school. Even better, summer meant camp! I think I will always be on "The Quarter System," and summer will always be my reward for passing all the tests taken during the rest of the year.
As for this summer, I hardly have much to say, as I have no perspective on it yet. It definitely was not as great as the summer that John, Brent and I went on a Middle Fork trip, followed by adventures in Yellowstone and the Tetons, culminating with Matthew Bagen's wedding in Jackson Hole. That trip was definitely outstanding, for all the right reasons. But this summer had its highlights. I will always remember the delicious meals delivered with such care, the scrumptious hugs, real and virtual, and the prayers and wishes for my recovery that were spread over near and far. I'm counting on the memories of radiation, chemotherapy, and scans and medical tests of all forms to fade. The next season will likely include the drama of major surgery and the loss of a vital organ, and more treatment. Perhaps I will aim for using the winter solstice as my turning point. I like the metaphor of darkness to light. From the shortest day of the year forward, I will strive to begin my recovery and reentry into the practical world.
There is still work to do before final decisions are made and put into place. That means that tomorrow I will do what I do on most days - put one foot in front of the other.
Love to all.
Did I enjoy my weekend? You bet.
Today is Labor Day, the day we traditionally bid farewell to summer. I have always found summer to be my favorite season. It's not that I don't like the other seasons; they all have their charms. But I particularly enjoy summer sports, summer fruit, the long days, the beach, a good suntan, and for the first 20 or so years, summer meant no school. Even better, summer meant camp! I think I will always be on "The Quarter System," and summer will always be my reward for passing all the tests taken during the rest of the year.
As for this summer, I hardly have much to say, as I have no perspective on it yet. It definitely was not as great as the summer that John, Brent and I went on a Middle Fork trip, followed by adventures in Yellowstone and the Tetons, culminating with Matthew Bagen's wedding in Jackson Hole. That trip was definitely outstanding, for all the right reasons. But this summer had its highlights. I will always remember the delicious meals delivered with such care, the scrumptious hugs, real and virtual, and the prayers and wishes for my recovery that were spread over near and far. I'm counting on the memories of radiation, chemotherapy, and scans and medical tests of all forms to fade. The next season will likely include the drama of major surgery and the loss of a vital organ, and more treatment. Perhaps I will aim for using the winter solstice as my turning point. I like the metaphor of darkness to light. From the shortest day of the year forward, I will strive to begin my recovery and reentry into the practical world.
There is still work to do before final decisions are made and put into place. That means that tomorrow I will do what I do on most days - put one foot in front of the other.
Love to all.
Saturday, August 30, 2008
The Pity Party is over. This morning, I enjoyed celebrating with Molly Flynn and her family at Temple Kehillat Chaim, and now we're off to North Carolina. If you know me then you know my special connection to all of the outdoors; the trees, the mountains and the water, especially the water. I will take pleasure in the opportunity to spend time with my family doing the things we love, and to do some healing.
Wishing all of you a safe and fun holiday weekend.
Wishing all of you a safe and fun holiday weekend.
Thursday, August 28, 2008
Pity Party
It was bound to come around again. The weight of the decisions I have faced and still face, the physical toll of treatment, the stress of undergoing tests and waiting for results, and the prognosis, the sheer magnitude of the odds against surviving, have culminated in one crummy week. I have not been very communicative this week for a reason. I am not terribly comfortable bemoaning my fate to others, as I know there is always someone else worse off than me. I have also found that it can be awkward for those who care to comfort someone who is simply inconsolable. I know myself well enough to know that I will rally, but this whole thing just plain sucks. It really does. I am tired of feeling and being sick and exhausted. Plus, it doesn't help that but for this abysmal inconvenience, today I would have been headed for Tucson and my much-adored Canyon Ranch.
The week was not a total loss, however, as I managed to make it to yoga and water aerobics classes. And the weekend holds some rays of hope. John, Brent, and I are planning to go Asheville to pick up Brent's new kayak, a Fluid Flirt. If I am feeling up to it, I will paddle the Tuckesiegee River on Monday. Paddling would probably do more to lift my spirits than just about anything.
BTW, my deepest apologies to water aerobics fans, but that always seemed to me either the exercise of choice for people who can't do anything else, or the last stop in exercise land before abandoning exercise altogether. Rather than getting you into shape, it's where the infirm go to try to keep from getting less infirm. Still, it was fun. For someone who can't do anything else right now.
PS The picture accompanying this post is definitely not me, nor anyone else I know. It's just a cool picture of a Fluid kayak.
Saturday, August 23, 2008
Green Light
I never thought that getting the green light for surgery would be a cause for celebration. All roadblocks have been removed, and I'm on the road to pneumonectomy-ville. Of course, preparing for this means more work, more decisions. I also think that the surgery will take place sooner rather than later, maybe the week following Labor Day. The coming week will be a busy one.
I continue to receive energy and strength from my friends and family. I am a boat, you are my oars.
xoxoxoxo
I continue to receive energy and strength from my friends and family. I am a boat, you are my oars.
xoxoxoxo
Thursday, August 21, 2008
Couldn't Resist
Just when you thought it was safe to check this blog, that the subject had been fully explored and expressed, check out www.clivus.com.
Smiling boosts the flow of chi. Not bad for the soul, either.
Smiling boosts the flow of chi. Not bad for the soul, either.
Wednesday, August 20, 2008
More Good News
I have to admit that my faith was hanging by a thread. But the good news was delivered this afternoon. The biopsy I had yesterday showed no cancer. At stake was whether, despite the otherwise successful response to treatment, cancer had spread to the bones. I am greatly relieved, ready to move forward. There is still a question floating around about an abnormality in my clivus. No, not that clivus. That clivus is fine, thank you. It is a bone at the base of the skull. I have had more tests than I can count over the last 10 days. This problem was never a great concern, and while it would have been nice to get a green light instead of a yellow light, with the blessings of my doctors, I am now ready to take the discussion about surgery to a final conclusion.
Tomorrow I will get radiation and the 7th of 7 chemotherapy treatments. I will probably get radiation on Friday, as well. But the more radiation I get, the smaller the window for surgery. So, the discussions and decisions contemplated over the next few days are critical. I have some serious work ahead of me; so what else is new?
My relief should be palpable.
Tomorrow I will get radiation and the 7th of 7 chemotherapy treatments. I will probably get radiation on Friday, as well. But the more radiation I get, the smaller the window for surgery. So, the discussions and decisions contemplated over the next few days are critical. I have some serious work ahead of me; so what else is new?
My relief should be palpable.
Monday, August 18, 2008
Some Good News
An issue concerning my left upper lobe was resolved positively today. "Radiation pneumonitis." Translation - inflammation resulting from being in the radiation treatment field. Score. Thanks Drs. Komaki and Wiggers. I love good news.
Otherwise, it was just another long day at the hospital. MRI, radiation treatment, meet with doctors, and wait. Lots of waiting.
Tomorrow is another test, one that requires some anesthesia. It's not the general kind, it's the kind where you get really, really relaxed and then you don't remember anything. And if you're me, you probably throw up sometime afterward. I appreciate anesthesia, but we don't entirely get along.
Another test means more waiting for results. That kind of waiting is so very hard. If you've never been in that position, you're lucky. If you have, you know what I am talking about.
Please keep those virtual hugs coming.
Otherwise, it was just another long day at the hospital. MRI, radiation treatment, meet with doctors, and wait. Lots of waiting.
Tomorrow is another test, one that requires some anesthesia. It's not the general kind, it's the kind where you get really, really relaxed and then you don't remember anything. And if you're me, you probably throw up sometime afterward. I appreciate anesthesia, but we don't entirely get along.
Another test means more waiting for results. That kind of waiting is so very hard. If you've never been in that position, you're lucky. If you have, you know what I am talking about.
Please keep those virtual hugs coming.
Saturday, August 16, 2008
Back Home
I'm back in Atlanta without the answer I was looking for but a concrete plan to move forward. This week I am undergoing more tests and resuming treatment. The window for surgery is still open, but just barely.
I cannot thank my brother and his family enough for everything they did for me this week. It was far beyond the call of duty. Liz served as my chauffeur, confidante, adviser, she gave me some of the best advice I have ever received, and made sure that I did not lose weight on her watch. Likewise, my gratitude for the medical care I received at MD Anderson as well as from my physicians in Atlanta knows no bounds. Thank you from the bottom of my heart.
The Denys boys held down the home front, and Amy and crew are making sure Aussenberg Waggoner LLP is still the premier family law firm in Atlanta.
I'm moving forward. Thanks everyone for staying with me.
xoxoxooxox
I cannot thank my brother and his family enough for everything they did for me this week. It was far beyond the call of duty. Liz served as my chauffeur, confidante, adviser, she gave me some of the best advice I have ever received, and made sure that I did not lose weight on her watch. Likewise, my gratitude for the medical care I received at MD Anderson as well as from my physicians in Atlanta knows no bounds. Thank you from the bottom of my heart.
The Denys boys held down the home front, and Amy and crew are making sure Aussenberg Waggoner LLP is still the premier family law firm in Atlanta.
I'm moving forward. Thanks everyone for staying with me.
xoxoxooxox
Thursday, August 14, 2008
MIC Day IV
Another day another test.
I'm beginning to feel that whatever life I do have is getting sucked out of me. I have had enough of cancerville. Tomorrow is another meeting with Roy Herbst. I'm not sure that Herbst & Co. is satisfied that they have all the information that they want to make a recommendation. Regardless, I will most likely get on the plane on Saturday to return to Atlanta. I feel that I am losing my perspective on where I am, which will make it difficult, if not impossible to make a good decision. I will make the most of tomorrow's meeting and then it will be time to regroup.
I'm beginning to feel that whatever life I do have is getting sucked out of me. I have had enough of cancerville. Tomorrow is another meeting with Roy Herbst. I'm not sure that Herbst & Co. is satisfied that they have all the information that they want to make a recommendation. Regardless, I will most likely get on the plane on Saturday to return to Atlanta. I feel that I am losing my perspective on where I am, which will make it difficult, if not impossible to make a good decision. I will make the most of tomorrow's meeting and then it will be time to regroup.
Wednesday, August 13, 2008
Medical Industrial Complex Day III
The day started a little easier, sleeping in until 7:30 (instead of 5:15) and being able to eat breakfast (instead of fasting). The rest of the day was spent inside the MIC (not your MIC Ruth). I had one test that a normal person would probably think was unpleasant but to which I am now immune. I also met with three physicians. It was another intense day. I feel as immersed as ever in this alien world. Despite my upbeat attitude, this experience has been difficult. No one will tell me that my cancer is gone and it will never come back. Instead, physicians convey what little information they have about my limited options, we continue to review test results, and we move toward a decision. It is a laborious process, physically and emotionally.
I am thankful for the opportunity to consult medical personnel who are trying to make things better for me and for all lung cancer patients. I am equally grateful for their endless compassion. I have another test tomorrow and an appointment with a physician on Friday morning when I am scheduled to leave. Today, I do not have the answer I came for, but on Friday I will likely have all the information I need to make a decision. Regardless, no decision is a cure.
I spent the evening being inspired by a friend of Neil and Liz's who was not expected to survive her cancer. Here she is, 11 years later, looking more like she survived an afternoon at a spa than radiation, chemotherapy, and two recurrences. Thanks, Holly. You make it look doable, if not easy.
BTW, even if I wasn't fighting cancer, I would still have disliked Pineapple Express.
I am thankful for the opportunity to consult medical personnel who are trying to make things better for me and for all lung cancer patients. I am equally grateful for their endless compassion. I have another test tomorrow and an appointment with a physician on Friday morning when I am scheduled to leave. Today, I do not have the answer I came for, but on Friday I will likely have all the information I need to make a decision. Regardless, no decision is a cure.
I spent the evening being inspired by a friend of Neil and Liz's who was not expected to survive her cancer. Here she is, 11 years later, looking more like she survived an afternoon at a spa than radiation, chemotherapy, and two recurrences. Thanks, Holly. You make it look doable, if not easy.
BTW, even if I wasn't fighting cancer, I would still have disliked Pineapple Express.
Tuesday, August 12, 2008
Medical Industrial Complex Part Deux
I am still awed by the smooth operation of this behemoth. Tests run at 8 am put results in the hands of the doctor by noon. I have several more tests scheduled, so no conclusions yet. The surgeon, however, did set a world record today. Liz and I waited 4 1/2 hours to see him. My 9:30 am appointment began at 2:00 pm. But we managed to eat a delicious breakfast and an equally appealing lunch. MDA takes hospital food to a whole new level. I also was paid a visit by the Jewish Chaplain. Who knew that MDA supported Healing Touch and Shamanic Journeys, my faves from Canyon Ranch?
We're off to see Pineapple Express. That should take my mind off things.
We're off to see Pineapple Express. That should take my mind off things.
Monday, August 11, 2008
Medical Industrial Complex Day I
Picture the Northside/St Jo's complex around Johnson Ferry and Peachtree Dunwoody Roads. Now multiply that density by 10. Then multiply that by 2. You probably get the picture. Luckily, my schedule today consisted of visiting only two buildings, and I was accompanied by either Liz or Neil.
I was familiar with all the tests that were conducted, so no surprises there. I guess my predominant impression is that for such a massive organization, it seems well run with superior employees. With a minor exception, everyone with whom I came in contact performed his/her job effortlessly and with great compassion. Like my experience at Emory, if it wasn't for getting stuck with needles and injected with dyes, it could have been a pleasant day.
Tomorrow I have a PET scan, which is like a CT scan only more involved, and I meet with the surgeon. I have one more test scheduled for Wednesday, and the possibility of meeting with more physicians. Tonight I will relax, enjoy a delicious dinner sans carbs (doctor's orders for the PET), and get to bed early.
I was familiar with all the tests that were conducted, so no surprises there. I guess my predominant impression is that for such a massive organization, it seems well run with superior employees. With a minor exception, everyone with whom I came in contact performed his/her job effortlessly and with great compassion. Like my experience at Emory, if it wasn't for getting stuck with needles and injected with dyes, it could have been a pleasant day.
Tomorrow I have a PET scan, which is like a CT scan only more involved, and I meet with the surgeon. I have one more test scheduled for Wednesday, and the possibility of meeting with more physicians. Tonight I will relax, enjoy a delicious dinner sans carbs (doctor's orders for the PET), and get to bed early.
Saturday, August 9, 2008
The boys are back from Idaho. They had an excellent trip with especially good weather. As much as I love the Middle Fork, it simply was not attainable for me this summer. I wasted no energy wishing I was some place I couldn't go.
Tomorrow I'm headed to Houston. It will be nice to visit with family, but this is definitely for business. I feel fortunate to have the opportunity to consult at such a renowned institution. At the same time, I am apprehensive about the sheer magnitude of MD Anderson as well as the notion of plunging further into a world ruled by illness. I recognize that it's also about hope, but hope that is born of harsh circumstances. I know, too, that it is still a matter of putting one foot in front of the other as a means to reach a decision about further treatment.
I'm feeling somewhat uneasy as my old life slips farther and farther away, and in its place is the altered reality that began in May. But there are no short cuts here. I must stay focused and stick to task. It's one foot, then the other.
The party is over for Brent, as he starts high school on Monday. I think he had a good summer despite the obvious glitch. Go Milton Eagles!
Tomorrow I'm headed to Houston. It will be nice to visit with family, but this is definitely for business. I feel fortunate to have the opportunity to consult at such a renowned institution. At the same time, I am apprehensive about the sheer magnitude of MD Anderson as well as the notion of plunging further into a world ruled by illness. I recognize that it's also about hope, but hope that is born of harsh circumstances. I know, too, that it is still a matter of putting one foot in front of the other as a means to reach a decision about further treatment.
I'm feeling somewhat uneasy as my old life slips farther and farther away, and in its place is the altered reality that began in May. But there are no short cuts here. I must stay focused and stick to task. It's one foot, then the other.
The party is over for Brent, as he starts high school on Monday. I think he had a good summer despite the obvious glitch. Go Milton Eagles!
Thursday, August 7, 2008
The visit to Emory on Tuesday was interesting and helpful. If it wasn't about critical health care decisions, it would have been downright enjoyable. Every physician was eager to share knowledge, answer questions, and assist me in any way possible. The staff at Emory and the facility itself were equally accommodating. I feel blessed to have access to great health care at St. Jo's, Emory, and elsewhere.
It is difficult to distill an entire day with health care providers into a few sentences. The upshot is that oncologists think radiation and chemotherapy is the best way to go, surgeons recommend surgery. I am still on track to visit MD Anderson next week. Everyone, my present team in particular, is interested in the results of the tests I will undergo. Is the cancer holding its ground, or is it on the run? The tumor has definitely shrunk but what about the infected lymph nodes? Is there new spread elsewhere? Those are the crucial questions. Without going into more details and nuance, I am leaning toward surgery if the test results look good.
I was granted another reprieve from treatment this week. For the past 6 weeks, if it's Thursday it's chemo day, but not today. Instead, I saw a movie, which I enjoyed, but even if I hadn't, a bad movie is still better than chemo. Trust me.
I have more energy than usual for a Thursday night. I also have my hair and a diminishing cough. I will start getting nervous when it's time to receive the test results, but for now, Life is Good.
It is difficult to distill an entire day with health care providers into a few sentences. The upshot is that oncologists think radiation and chemotherapy is the best way to go, surgeons recommend surgery. I am still on track to visit MD Anderson next week. Everyone, my present team in particular, is interested in the results of the tests I will undergo. Is the cancer holding its ground, or is it on the run? The tumor has definitely shrunk but what about the infected lymph nodes? Is there new spread elsewhere? Those are the crucial questions. Without going into more details and nuance, I am leaning toward surgery if the test results look good.
I was granted another reprieve from treatment this week. For the past 6 weeks, if it's Thursday it's chemo day, but not today. Instead, I saw a movie, which I enjoyed, but even if I hadn't, a bad movie is still better than chemo. Trust me.
I have more energy than usual for a Thursday night. I also have my hair and a diminishing cough. I will start getting nervous when it's time to receive the test results, but for now, Life is Good.
Monday, August 4, 2008
I am still high from the superb visit with Liz and David. I do not think I could have collected all my medical records in such a short time without Liz's help. It was hard work, but the rest of the visit was pure pleasure. Ben is still here, working away at the office and helping me at home. Again, a pleasure.
My boys are on the Middle Fork of the Salmon River in Idaho. They put in at Boundary Creek on Saturday and will reach Cache Bar just past the confluence with the Main Salmon on Thursday. I hope they are having great weather and a great trip. I sure miss being with them in one of my favorite places. Survey Creek will always hold a special place in my heart....
My plans for evaluations at Emory and MD Anderson are set. I am going to Emory tomorrow to consult with medical and radiation oncologists. I will be in Houston all next week for a battery of tests and to meet with a surgeon. What I don't know is the plan that the Home Team has for me. I would have liked to know by now, but I can also be patient. I have now had the maximum amount of radiation treatments possible and still be eligible for surgery. I have been granted a two week hiatus from radiation to explore the surgical option. This break is welcome not just because of the new opportunity; there is apparently a correlation between past sunburns and radiation. Kind of like an LSD flashback only no chance of fun. My back is blistered and itchy, relieved only by applying pure aloe.
Today I went to my first yoga class since the diagnosis. It was an easy and enjoyable class, but it was still challenging for me. It will be a long road back to fitness. Other than dredging up the sunburns of my past (think Callaway Gardens on July 4th), my only real problem has been fatigue. I will continue to exercise as I feel like it, but it is not my primary focus.
It feels good to be moving forward. Look for more good news soon.
Elyse
My boys are on the Middle Fork of the Salmon River in Idaho. They put in at Boundary Creek on Saturday and will reach Cache Bar just past the confluence with the Main Salmon on Thursday. I hope they are having great weather and a great trip. I sure miss being with them in one of my favorite places. Survey Creek will always hold a special place in my heart....
My plans for evaluations at Emory and MD Anderson are set. I am going to Emory tomorrow to consult with medical and radiation oncologists. I will be in Houston all next week for a battery of tests and to meet with a surgeon. What I don't know is the plan that the Home Team has for me. I would have liked to know by now, but I can also be patient. I have now had the maximum amount of radiation treatments possible and still be eligible for surgery. I have been granted a two week hiatus from radiation to explore the surgical option. This break is welcome not just because of the new opportunity; there is apparently a correlation between past sunburns and radiation. Kind of like an LSD flashback only no chance of fun. My back is blistered and itchy, relieved only by applying pure aloe.
Today I went to my first yoga class since the diagnosis. It was an easy and enjoyable class, but it was still challenging for me. It will be a long road back to fitness. Other than dredging up the sunburns of my past (think Callaway Gardens on July 4th), my only real problem has been fatigue. I will continue to exercise as I feel like it, but it is not my primary focus.
It feels good to be moving forward. Look for more good news soon.
Elyse
Thursday, July 31, 2008
Hello from "Coordinating with Medical Facilities Central." Given my good response to the current treatment, surgery may now be an option. The bottom line is, I have been advised that surgery is the best option if I am a candidate. There is some question about how the loss of a lung will affect my quality of life, but if I have no life, who gives a s--t about quality.
Not knowing what would be available, last weekend I put out the call for assistance in getting an evaluation for surgery at Memorial Sloan Kettering (MSK) in New York and MD Anderson (MDA) in Houston. This week I also accepted an offer to try and schedule an evaluation at Emory. Much to my amazement, with the help of my remarkable friends and family, every institution has accepted me. I am currently scheduled to go to Emory on Tuesday 8/5 and MDA the following Tuesday. That is subject to change, as the MDA evaluation takes 7 to 10 days. I am working on condensing the MDA evaluation and/or switching the Emory and MDA appointments. In the meantime, Liz and I are furiously working on collecting medical records (a daunting task), I am still waiting for a consensus from my team of doctors here, and the surgeon at MSK is available on Wednesdays in August, so that has not been ruled out. Whew. Thank goodness for Liz and Neil, Doc Dave, Lee, Richard, and Regina.
I am sad to acknowledge there have been two other recent cancer diagnoses of women my age who live in Atlanta. One has lung cancer. My heart goes out to those stricken and their families, and ask that all my blog readers say an extra prayer for their recovery.
What can I do to thank all of my supporters who have helped get me to this point? You have nourished my body, my family, my spirit, and taken care of me in ways unimaginable a few shorts months ago. My goal is a full and complete recovery. There is no possible way that this could happen without each and every one of you.
Love to all
Not knowing what would be available, last weekend I put out the call for assistance in getting an evaluation for surgery at Memorial Sloan Kettering (MSK) in New York and MD Anderson (MDA) in Houston. This week I also accepted an offer to try and schedule an evaluation at Emory. Much to my amazement, with the help of my remarkable friends and family, every institution has accepted me. I am currently scheduled to go to Emory on Tuesday 8/5 and MDA the following Tuesday. That is subject to change, as the MDA evaluation takes 7 to 10 days. I am working on condensing the MDA evaluation and/or switching the Emory and MDA appointments. In the meantime, Liz and I are furiously working on collecting medical records (a daunting task), I am still waiting for a consensus from my team of doctors here, and the surgeon at MSK is available on Wednesdays in August, so that has not been ruled out. Whew. Thank goodness for Liz and Neil, Doc Dave, Lee, Richard, and Regina.
I am sad to acknowledge there have been two other recent cancer diagnoses of women my age who live in Atlanta. One has lung cancer. My heart goes out to those stricken and their families, and ask that all my blog readers say an extra prayer for their recovery.
What can I do to thank all of my supporters who have helped get me to this point? You have nourished my body, my family, my spirit, and taken care of me in ways unimaginable a few shorts months ago. My goal is a full and complete recovery. There is no possible way that this could happen without each and every one of you.
Love to all
Sunday, July 27, 2008
Happy birthday Amy A! Hope your 50's keep you bright and shiny and bring less drama than mine.
It was a pleasant weekend with Ben, my family, and a few friends. This week brings more Aussenbergs to town (Liz and David) and perhaps some new decisions about my treatment. The prospect of shaking things up in the medical arena revs my engines.
Apparently, there are opportunities for excitement, even in this so-called life.
It was a pleasant weekend with Ben, my family, and a few friends. This week brings more Aussenbergs to town (Liz and David) and perhaps some new decisions about my treatment. The prospect of shaking things up in the medical arena revs my engines.
Apparently, there are opportunities for excitement, even in this so-called life.
Thursday, July 24, 2008
Good News
You would have thought that I won the lottery today. Everyone in Dr. Wiggers' office was all smiles, hugging me, congratulating me. The results of a CT scan performed in Wiggers' office yesterday are unequivocal. The tumor has been busted. Instead of a huge mass, it is dramatically reduced, surrounded by bits and pieces of what it once was. A shadow of its former self, literally. Dr. Wiggers could hardly contain her excitement, and brought me in to the lab to look at the comparison between the pre-treatment and yesterday's scans. I got a hug from Dubovsky, and Dr. Scheinberg weighed in with his congrats. Couldn't have come at a better time. That, plus the comments about statistics. Each comment helped, but I have to hand it to Steve B. for boosting my confidence on this one.
Chemo was a little uneven today. It was postponed until later in the afternoon to check out an unpleasant feeling in my chest. It temporarily drizzled on my parade, but I checked out fine, and I was able to take my poisons. Loooong day. Thanks, Michelle. You were a real trooper.
If the steroid high continues, I may feel like a walk tomorrow. Anyone up for the Greenway?
Chemo was a little uneven today. It was postponed until later in the afternoon to check out an unpleasant feeling in my chest. It temporarily drizzled on my parade, but I checked out fine, and I was able to take my poisons. Loooong day. Thanks, Michelle. You were a real trooper.
If the steroid high continues, I may feel like a walk tomorrow. Anyone up for the Greenway?
Wednesday, July 23, 2008
Difficult Day
Today was a more difficult day than I have experienced in awhile. While perusing the National Lung Cancer Partnership website I was confronted with raw statistics, which I have seen before, yet have studiously avoided. But, in fact, these statistics are not pretty. Unfortunately, sometimes a good attitude can falter in the face of certain realities. Also as a result of the NLCP website, I had a poignant reconnection with an old friend. He had followed his heart to California about 10 years ago. Not long after, his girlfriend was diagnosed with lung cancer, virtually the same diagnosis as mine. An athletic, vegetarian non-smoker, she did not win her battle. Her struggle touched him deeply and he became an advocate for all things that kill lung cancer. That is how he came to be on the board of the NLCP.
This roller coaster ride is at a low point. I will go back to basics. Regroup. Put one foot in front of the other. Tomorrow is chemo #5 of 7, and radiation #20 of 34. Maybe I will add some prayer to those bags of medicine.
This roller coaster ride is at a low point. I will go back to basics. Regroup. Put one foot in front of the other. Tomorrow is chemo #5 of 7, and radiation #20 of 34. Maybe I will add some prayer to those bags of medicine.
Sunday, July 20, 2008
The weekend brought many delightful moments. I highly recommend Serenbe as a peaceful and beautiful retreat. I have already made plans to spend a weekend there in September with John to celebrate our birthdays and anniversary. It has a laid back charm that will be perfect for a relaxing getaway.
The workshop that I attended was energizing. The vision of the Atlanta Collaborative Divorce Alliance was renewed and refined, with a concrete plan that will see us through the next year, and beyond. I am more committed than ever to working together with my financial and mental health colleagues to help couples who are divorcing to make good decisions for themselves and their families. Speaking of colleagues, I hope it won't be long until I will not only be actively working with them again, but fully participating in all their extracurricular activities. Amy, you make a mean martini. Saying goodbye to Lauren Alexander was bittersweet, as we wish her well in her new endeavor. Happy trails. You know you can come "home" anytime.
Within minutes of returning from the retreat, John and Brent pulled up. I have not quite gotten all the hugs I need from my son, but I'm getting there. He's taller, tanner, and chock full of great experiences to share. Thank you Falling Creek Camp, for giving him just what he needed.
I am pleased to report that this weekend was more about what I could do, than what I couldn't. The bucket is not half empty. It is half full, and getting fuller.
Thursday, July 17, 2008
Learning More
I met with Dr. Dubovsky before my chemo treatment today. Based on our discussion, I don't think that I fully understood my treatment protocol. Turns out that my 7 weeks of chemo is not the full course. My understanding now is that the 2 courses of chemo that I will likely receive after the 7 weeks is to complete what would have been 4 rounds total of chemotherapy, which seems to be a very common treatment protocol. My weekly doses are apparently fairly weak compared to the punch that comes with chemo received every 21 days. It's the effect of nagging at that tumor every single week that Dubovsky was looking for. He reports that my vitals and numbers (blood counts) are good, and the lungs are functioning to his satisfaction. I'm glad for the enlightenment, the other good news, and I committed as ever to beating this thing.
Tonight, fabulous steroid high notwithstanding, I am looking forward to the weekend retreat with the Atlanta Collaborative Divorce Alliance, and the return of my son on Sunday. Next week also brings my nephew, Ben, to town. I have nothing but good things to look forward to. I am also buoyed by the wonderful comments on the blog. Silver linings can be so sweet, and I do not regret for a moment that I have reached out for this one.
Virtual hugs to all.
Tonight, fabulous steroid high notwithstanding, I am looking forward to the weekend retreat with the Atlanta Collaborative Divorce Alliance, and the return of my son on Sunday. Next week also brings my nephew, Ben, to town. I have nothing but good things to look forward to. I am also buoyed by the wonderful comments on the blog. Silver linings can be so sweet, and I do not regret for a moment that I have reached out for this one.
Virtual hugs to all.
Tuesday, July 15, 2008
Today I had an appointment with Dr. Scheinberg. I have not seen him since he visited me after the biopsy in June. There was not a whole lot to discuss, as he has not been receiving the notes from Drs. Dubovsky and Wiggers. I am sure he will rectify that sooner rather than later. I initiated this appointment with him, but he is clearly committed to remaining my "quarterback" through the treatment process. We also talked about Team Dream and his many, many research, awareness-raising, and fund raising projects for lung cancer. He was thrilled to hear of TD2009's contribution. He is putting me in touch with lung cancer survivors who are also involved in fund-raising activities, and I expect to be on his awareness-raising bandwagon as soon as I am up to it.
A thought on blogging. I can't imagine going through this process without this blog. For one thing, I think it would be too lonely. I can only entertain so many visitors, as the most conspicuous side effect of my condition and treatment is fatigue. I simply don't have much energy, even for phone calls. But this blog serves several purposes, one of which is keeping me connected with people I am not able to see, or even talk with right now. Lately, however, it is feeling a little like a one way street. I enjoy the writing, and many people have told me that they enjoy reading the blog. I wouldn't mind if you let me know by posting a comment. It does not have to be literary, witty, deep or scholarly. And if you can't figure out how to post your comment, find a teenager to help. Even 10 year olds are adept in this area.
My world is very small right now. I only intend to live this way for as long as I absolutely have to. But while I am here, please help keep me connected to the one out there that I so deeply love.
A thought on blogging. I can't imagine going through this process without this blog. For one thing, I think it would be too lonely. I can only entertain so many visitors, as the most conspicuous side effect of my condition and treatment is fatigue. I simply don't have much energy, even for phone calls. But this blog serves several purposes, one of which is keeping me connected with people I am not able to see, or even talk with right now. Lately, however, it is feeling a little like a one way street. I enjoy the writing, and many people have told me that they enjoy reading the blog. I wouldn't mind if you let me know by posting a comment. It does not have to be literary, witty, deep or scholarly. And if you can't figure out how to post your comment, find a teenager to help. Even 10 year olds are adept in this area.
My world is very small right now. I only intend to live this way for as long as I absolutely have to. But while I am here, please help keep me connected to the one out there that I so deeply love.
Sunday, July 13, 2008
The Weekend
The weekend has been quiet with the exception of some welcome visitors. My pattern of bad Saturdays and better Sundays was broken. Did anyone mention a pattern? Did I say there was a pattern here? Whatever. Saturday was easier than today.
Good news on the hair front. I'm still waiting for the hair drop. In fact, I had a leg wax today because I couldn't wait any longer. Another week and I'll need a hair cut and color. I have gotten great advice from survivors about hair loss, but I'm just not ready to "get over it."
Bad news on the weight front. I never, ever, thought I'd see the day that a 1-1/2 pound weight loss would cause distress, but it is. I hadn't expected it since I felt I was eating well all week. I guess that the cooks out there can use whole milk or cream instead of low fat. It seems so counter intuitive. And bring on the Haagen Dazs Pomegranate Chip.
Team Dream had quite a kickoff week. Now it's my turn to put all you riders and contributors in my prayers.
Last, and never least, Brent has one more week of camp. The letters and pictures show a very happy guy. That's him on the bottom left.
Love to all.
Friday, July 11, 2008
Rewrite
I couldn't stand it. I had to rewrite my posting for July 9. The premise was too good not to make it a complete thought.
Plus, I couldn't sleep. Now I'm off to try again.
Plus, I couldn't sleep. Now I'm off to try again.
Thursday, July 10, 2008
Good Medicine
The skies cleared, and armed with my new handicapped parking permit, John and I headed to Encore Park for the Steve Winwood/Tom Petty concert. It was as good as I had hoped. I stood through most of Petty's set, and never felt overly fatigued. I am not sure that I could have handled this on any other night besides a Wednesday, as it's the farthest day from the chemo treatment. So the timing gods were definitely on my side.
John and I are both long time Winwood fans. He played several Traffic songs, which are my favorite, and he played a couple of songs with Petty. Tom Petty is amazing. He looks funny, he talks funny, but he creates music that rocks my world, and I am clearly not alone in that sentiment. And he doesn't even break a sweat. His only hard work is finding songs that the audience doesn't know every word to. In fact, he went back to his Mud Crutch days to find something that the audience couldn't sing along with. I'm not sure why the music of Tom Petty and the Heartbreakers is so appealing to so many. Perhaps other avid fans who I know are out there can do a better job of articulating a reason.
There are several other good news items on the agenda. First, today was my third chemo treatment. Three down, four to go. The effects are cumulative, so I am expecting the weekends to be rough, but so far so good. I still have my hair (more about that later), and my good spirits. And, surprisingly, my appetite returned this week. I have been eating like a normal person. Or at least the way I normally eat. Two days this week I had eggs for breakfast, and I have probably eaten an egg for breakfast only one other time since my diagnosis. I have a healthy appetite for lunch and dinner. I am savoring my food now, instead of shoving it in with a grimace. This is a huge improvement.
Now for the hair. I am really not happy about this issue. Nothing screams CANCER PATIENT! like a bald head on a woman. Right now I have the option of revealing my situation, or not. For those of you who have not seen me lately, I look like Elyse at her "fighting" weight, which is not a bad thing. Last night at the concert, a woman struck up a conversation with me in between sets. We had a pleasant chat, which I enjoyed. If I'm bald, I doubt that I will have the option of chatting idly. Which I enjoy. Once I lose my hair, there will be no escaping the diagnosis, wherever I go.
I have one other matter to address. Princesses like good seats at concerts. This Princess loves good, solid rock and roll, but would pass on a lousy seat to Springsteen, and would not even consider lawn seats at Chastain. This is the same Princess who loves to camp out, but does not like shlepping her dry bag from the raft to the camp site. She loves the outdoors, but does not mind guides cooking her dinner. Or even pitching her tent. As you may have guessed, our seats last night were less than stellar, and they were not inexpensive. So please, if you have suggestions for scoring good tickets at prices that won't make me gasp, and you are willing to share this information with your unconnected-in-the-rock-world friend, I will be eternally grateful. (Please, no jokes about the eternal thing).
I'm bracing myself for a rough weekend, but on balance, life, such as it is, is good.
xoxoxoox
John and I are both long time Winwood fans. He played several Traffic songs, which are my favorite, and he played a couple of songs with Petty. Tom Petty is amazing. He looks funny, he talks funny, but he creates music that rocks my world, and I am clearly not alone in that sentiment. And he doesn't even break a sweat. His only hard work is finding songs that the audience doesn't know every word to. In fact, he went back to his Mud Crutch days to find something that the audience couldn't sing along with. I'm not sure why the music of Tom Petty and the Heartbreakers is so appealing to so many. Perhaps other avid fans who I know are out there can do a better job of articulating a reason.
There are several other good news items on the agenda. First, today was my third chemo treatment. Three down, four to go. The effects are cumulative, so I am expecting the weekends to be rough, but so far so good. I still have my hair (more about that later), and my good spirits. And, surprisingly, my appetite returned this week. I have been eating like a normal person. Or at least the way I normally eat. Two days this week I had eggs for breakfast, and I have probably eaten an egg for breakfast only one other time since my diagnosis. I have a healthy appetite for lunch and dinner. I am savoring my food now, instead of shoving it in with a grimace. This is a huge improvement.
Now for the hair. I am really not happy about this issue. Nothing screams CANCER PATIENT! like a bald head on a woman. Right now I have the option of revealing my situation, or not. For those of you who have not seen me lately, I look like Elyse at her "fighting" weight, which is not a bad thing. Last night at the concert, a woman struck up a conversation with me in between sets. We had a pleasant chat, which I enjoyed. If I'm bald, I doubt that I will have the option of chatting idly. Which I enjoy. Once I lose my hair, there will be no escaping the diagnosis, wherever I go.
I have one other matter to address. Princesses like good seats at concerts. This Princess loves good, solid rock and roll, but would pass on a lousy seat to Springsteen, and would not even consider lawn seats at Chastain. This is the same Princess who loves to camp out, but does not like shlepping her dry bag from the raft to the camp site. She loves the outdoors, but does not mind guides cooking her dinner. Or even pitching her tent. As you may have guessed, our seats last night were less than stellar, and they were not inexpensive. So please, if you have suggestions for scoring good tickets at prices that won't make me gasp, and you are willing to share this information with your unconnected-in-the-rock-world friend, I will be eternally grateful. (Please, no jokes about the eternal thing).
I'm bracing myself for a rough weekend, but on balance, life, such as it is, is good.
xoxoxoox
Wednesday, July 9, 2008
With Apologies to the Passover Haggadah
The Four Questions according to Elyse:
Why is my cancer treatment different from all other cancer treatments?
1. All other treatments that include radiation and chemotherapy run them consecutively. Why are my treatments concurrent?
2. All other chemotherapy treatments are administered every 21 days. Why are mine weekly?
3. Many cancer patients do not lose their hair. Why must I?
4. Typically, cancer patients receiving chemotherapy have ports. Why don't I?
The Answers:
Questions 1 and 2 - The answers seem obvious. I am receiving VAT. Very Aggressive Treatment. There are clearly physical challenges associated with VAT. For one, I have to be at St. Jo's every weekday. Thursdays are out due to chemo, Fridays are iffy, and Saturdays and Sundays are rough. So that just leaves Mon-Tues-Weds. With chemotherapy every 7 days, it leaves very little time for me to make concrete social, work and exercise plans. I have been told that patients on the 21 day chemo cycle can have good weeks between treatments.
Question 3 - Fine Georgia Whine. Move on.
Question 4 - Dubovsky indicated that he intended to avoid any unnecessary invasive procedure. I like to think he is being optimistic, but that is only my speculation.
In short, not every day, or every part of the day is great. The ultimate planning machine is now barred from one of the things she does best. But in some intangible ways my strength is growing. I know that I have the resolve to beat this, and at times I can actually feel that determination. And do not discount, for even a single second, that every email, get well card, helping hand, telephone call, blog comment, and virtual and real hug that I receive does not fuel that strength.
So I take my little steps and move forward. I have been resting up all morning, I will get my radiation treatment, and I will get in one more nap before the concert tonight.
I know it's only Rock and Roll (ha!), but I like it. Thank you for helping me get there.
With love, and more apologies to Mick and crew,
Elyse
Why is my cancer treatment different from all other cancer treatments?
1. All other treatments that include radiation and chemotherapy run them consecutively. Why are my treatments concurrent?
2. All other chemotherapy treatments are administered every 21 days. Why are mine weekly?
3. Many cancer patients do not lose their hair. Why must I?
4. Typically, cancer patients receiving chemotherapy have ports. Why don't I?
The Answers:
Questions 1 and 2 - The answers seem obvious. I am receiving VAT. Very Aggressive Treatment. There are clearly physical challenges associated with VAT. For one, I have to be at St. Jo's every weekday. Thursdays are out due to chemo, Fridays are iffy, and Saturdays and Sundays are rough. So that just leaves Mon-Tues-Weds. With chemotherapy every 7 days, it leaves very little time for me to make concrete social, work and exercise plans. I have been told that patients on the 21 day chemo cycle can have good weeks between treatments.
Question 3 - Fine Georgia Whine. Move on.
Question 4 - Dubovsky indicated that he intended to avoid any unnecessary invasive procedure. I like to think he is being optimistic, but that is only my speculation.
In short, not every day, or every part of the day is great. The ultimate planning machine is now barred from one of the things she does best. But in some intangible ways my strength is growing. I know that I have the resolve to beat this, and at times I can actually feel that determination. And do not discount, for even a single second, that every email, get well card, helping hand, telephone call, blog comment, and virtual and real hug that I receive does not fuel that strength.
So I take my little steps and move forward. I have been resting up all morning, I will get my radiation treatment, and I will get in one more nap before the concert tonight.
I know it's only Rock and Roll (ha!), but I like it. Thank you for helping me get there.
With love, and more apologies to Mick and crew,
Elyse
Sunday, July 6, 2008
There are friends and there are law partners, but there is only one Amy Waggoner.
Below you will find links to a truly incredible part of this journey. I know that we find rays of hope in many places, during good times and especially during the bad times. Thanks to the extraordinary support I have received, I have been fortunate to have experienced many bright moments over these past weeks. So far, the only good I can see coming out of bad is the power of those encouraging experiences. But bringing into fruition the vision of Amy, with the help of Mark Spiegel, Heather Stanley, Mary Eckwall, Lauren Alexander, Marsha Schechtman, David Alexander, Lynn Whitten, and Rachel Jacobson propel me to a level of hope for which words really do escape me. When you view these sites you will surely understand the reason I am rendered speechless.
www.teamdream2009.com
www.firstgiving.com/teamdream2009
Below you will find links to a truly incredible part of this journey. I know that we find rays of hope in many places, during good times and especially during the bad times. Thanks to the extraordinary support I have received, I have been fortunate to have experienced many bright moments over these past weeks. So far, the only good I can see coming out of bad is the power of those encouraging experiences. But bringing into fruition the vision of Amy, with the help of Mark Spiegel, Heather Stanley, Mary Eckwall, Lauren Alexander, Marsha Schechtman, David Alexander, Lynn Whitten, and Rachel Jacobson propel me to a level of hope for which words really do escape me. When you view these sites you will surely understand the reason I am rendered speechless.
www.teamdream2009.com
www.firstgiving.com/teamdream2009
A slightly belated happy birthday to America. John and I celebrated with friends at Club Falkenstein. Ruth and David have a great house for entertaining, and they sure know how to use it.
This has been a quiet weekend. I have not had much energy, so other than a trip to Target, I remained at home enjoying visits from friends. And home made pizza. Michael, you cook like nobody's business.
With my lower energy level, this week may be quieter than last week. My goal is to make it to the Tom Petty concert on Wednesday night. As the good fates would have it, that is the best possible night for me. Erev chemo.
So, I just wanted to say hello to my supporters out there, and let you know I was thinking about you. All of you. But before I sign off, I am reprinting below an article from Saturday's AJC. This article goes out to all you Springsteen fans, me included, who have been searching for just the right words to articulate some of the ways in which this man and his music touch us.
'Boss' of spirituality
Minister dissects catalog, finds hope
By Ron Csillag
Religion News Service
Published on: 07/05/08
To millions of fans, he's "the Boss," the bluejeaned troubadour of the American heartland who finds nobility in the grind of daily life.
Across 35 years in dozens of rock anthems, from "Born to Run" to "Glory Days" to "Born in the U.S.A.," Bruce Springsteen has chronicled lost souls, haunted war veterans, gritty factory workers, and highways jammed with broken heroes —- but also advanced themes of redemption, hope and keeping the faith.
It's been a rich vein of spiritual motifs, and the politically progressive 58-year-old singer-songwriter has given voice to society's dispossessed. His work of late has been bleak, brooding and introspective, even grieving.
But the Boss as spiritual guidepost?
Jeffrey Symynkywicz, a Unitarian Universalist minister on Boston's South Shore and dedicated Springsteen fan, has pored over the singer's rich, multilayered lyrics and viewed them through a theological lens. The result is the new "The Gospel According to Bruce Springsteen," the latest addition to a crowded genre that mines the spiritual in pop culture.
A Harvard Divinity School graduate, Symynkywicz stresses that he's not out to peddle the First Church of Bruce. His admiration for Springsteen is rooted more in the inspirational and empathetic than the theological.
"What's inspiring about him is that he has so much to say about different life stages that we all go through," Symynkywicz said from his church in suburban Stoughton, Mass. "The thing I really like about his music as I've gotten older is that he gets older too. His music deepens and matures and he sings like a grown-up."
It's been a frenzied, often frightening time —- one Springsteen has faced unflinchingly —- and he's brought the rest of us along for the ride.
"When we discern that Springsteen is 'there' for us —- when we feel as though he is addressing us directly and personally in his songs," Symynkywicz writes, "his work seems to put down strong roots in our own experience. His music helps us to make sense of the sometimes tangled, often disparate threads of our lives."
At its foundation, Symynkywicz adds, it's a religious undertaking, a ministry of healing —- a task that gets to the very meaning of the word religion. But Springsteen's canon is neither sufficiently creedal nor doctrinaire to stand up as theology, Symynkywicz emphasizes.
"What he does for me is help me discern my own traditions, my own personal theology and faith —- but more deeply."
So it's more like good news —- "the affirmation that no principality or power —- no forces seen or unseen, no terror-mad souls or devilish plots —- can ever separate us from the love that is in our souls."
The Boss himself does not shy away from overt religious imagery. "Jesus was an only son as he walked up Calvary Hill," he sang on 2005's "Devils & Dust." Springsteen was raised a Roman Catholic in New Jersey and attended a parochial school where, according to one biography, he clashed with both the nuns and other students.
He told The New York Times a couple of years ago that he isn't a churchgoer, but "as I got older, I got less defensive about it. I thought, I've inherited this particular landscape, and I can build it into something of my own."
It's not so much Springsteen's personal faith in which Symynkywicz finds comfort, but in his working-class roots.
"It was very much like the working-class family I grew up in . . . the same kinds of fights with my father," the author says. "That's why I recognize in him the reality of when he sings about working people and [their] limited horizons, but also the palpable reality of real life. It's authentic."
Symynkywicz, 53, chuckles when asked whether his congregants are accustomed to Springsteen-infused sermons. "They're probably sick of hearing it," he says. He's seen the Boss in concert seven times, which makes him a far cry from being a "Tramp" —- the die-hards who follow the singer around everywhere.
Still, the author does what few fans have: dissect Springsteen's 250-song catalog over 14 studio albums, starting with 1973's "Greetings From Asbury Park, N.J." to last year's "Magic." He unearths a treasure-trove of hard-knock life lessons; analogues to biblical passages and other spiritual writings; and examples of redemption, courage, hope and love.
Symynkywicz's book is the latest in a niche that looks for, and sometimes finds, the spiritual in the pop landscape, from "Peanuts" to "The Simpsons," "Harry Potter," "Seinfeld" and "Buffy the Vampire Slayer."
"Writers, singers, filmmakers and TV producers are the mythmakers for our times," the author explains. "People don't just want to consume popular culture —- though some people do —- they want to discern what's deeper in there and what meaning it gives their lives."
Ultimately, Symynkywicz sees a kind of rough, defiant hope in Springsteen's songs.
"He's hopeful rather than optimistic. 'Everybody has a reason to begin again,' he sings in 'Long Walk Home.' There's always a reason to go on.
"But it's a tough hope in a tough world —- a world that isn't, on the surface, getting better. There is a hopefulness there —- that we can turn things around and move in a more progressive direction."
This has been a quiet weekend. I have not had much energy, so other than a trip to Target, I remained at home enjoying visits from friends. And home made pizza. Michael, you cook like nobody's business.
With my lower energy level, this week may be quieter than last week. My goal is to make it to the Tom Petty concert on Wednesday night. As the good fates would have it, that is the best possible night for me. Erev chemo.
So, I just wanted to say hello to my supporters out there, and let you know I was thinking about you. All of you. But before I sign off, I am reprinting below an article from Saturday's AJC. This article goes out to all you Springsteen fans, me included, who have been searching for just the right words to articulate some of the ways in which this man and his music touch us.
'Boss' of spirituality
Minister dissects catalog, finds hope
By Ron Csillag
Religion News Service
Published on: 07/05/08
To millions of fans, he's "the Boss," the bluejeaned troubadour of the American heartland who finds nobility in the grind of daily life.
Across 35 years in dozens of rock anthems, from "Born to Run" to "Glory Days" to "Born in the U.S.A.," Bruce Springsteen has chronicled lost souls, haunted war veterans, gritty factory workers, and highways jammed with broken heroes —- but also advanced themes of redemption, hope and keeping the faith.
It's been a rich vein of spiritual motifs, and the politically progressive 58-year-old singer-songwriter has given voice to society's dispossessed. His work of late has been bleak, brooding and introspective, even grieving.
But the Boss as spiritual guidepost?
Jeffrey Symynkywicz, a Unitarian Universalist minister on Boston's South Shore and dedicated Springsteen fan, has pored over the singer's rich, multilayered lyrics and viewed them through a theological lens. The result is the new "The Gospel According to Bruce Springsteen," the latest addition to a crowded genre that mines the spiritual in pop culture.
A Harvard Divinity School graduate, Symynkywicz stresses that he's not out to peddle the First Church of Bruce. His admiration for Springsteen is rooted more in the inspirational and empathetic than the theological.
"What's inspiring about him is that he has so much to say about different life stages that we all go through," Symynkywicz said from his church in suburban Stoughton, Mass. "The thing I really like about his music as I've gotten older is that he gets older too. His music deepens and matures and he sings like a grown-up."
It's been a frenzied, often frightening time —- one Springsteen has faced unflinchingly —- and he's brought the rest of us along for the ride.
"When we discern that Springsteen is 'there' for us —- when we feel as though he is addressing us directly and personally in his songs," Symynkywicz writes, "his work seems to put down strong roots in our own experience. His music helps us to make sense of the sometimes tangled, often disparate threads of our lives."
At its foundation, Symynkywicz adds, it's a religious undertaking, a ministry of healing —- a task that gets to the very meaning of the word religion. But Springsteen's canon is neither sufficiently creedal nor doctrinaire to stand up as theology, Symynkywicz emphasizes.
"What he does for me is help me discern my own traditions, my own personal theology and faith —- but more deeply."
So it's more like good news —- "the affirmation that no principality or power —- no forces seen or unseen, no terror-mad souls or devilish plots —- can ever separate us from the love that is in our souls."
The Boss himself does not shy away from overt religious imagery. "Jesus was an only son as he walked up Calvary Hill," he sang on 2005's "Devils & Dust." Springsteen was raised a Roman Catholic in New Jersey and attended a parochial school where, according to one biography, he clashed with both the nuns and other students.
He told The New York Times a couple of years ago that he isn't a churchgoer, but "as I got older, I got less defensive about it. I thought, I've inherited this particular landscape, and I can build it into something of my own."
It's not so much Springsteen's personal faith in which Symynkywicz finds comfort, but in his working-class roots.
"It was very much like the working-class family I grew up in . . . the same kinds of fights with my father," the author says. "That's why I recognize in him the reality of when he sings about working people and [their] limited horizons, but also the palpable reality of real life. It's authentic."
Symynkywicz, 53, chuckles when asked whether his congregants are accustomed to Springsteen-infused sermons. "They're probably sick of hearing it," he says. He's seen the Boss in concert seven times, which makes him a far cry from being a "Tramp" —- the die-hards who follow the singer around everywhere.
Still, the author does what few fans have: dissect Springsteen's 250-song catalog over 14 studio albums, starting with 1973's "Greetings From Asbury Park, N.J." to last year's "Magic." He unearths a treasure-trove of hard-knock life lessons; analogues to biblical passages and other spiritual writings; and examples of redemption, courage, hope and love.
Symynkywicz's book is the latest in a niche that looks for, and sometimes finds, the spiritual in the pop landscape, from "Peanuts" to "The Simpsons," "Harry Potter," "Seinfeld" and "Buffy the Vampire Slayer."
"Writers, singers, filmmakers and TV producers are the mythmakers for our times," the author explains. "People don't just want to consume popular culture —- though some people do —- they want to discern what's deeper in there and what meaning it gives their lives."
Ultimately, Symynkywicz sees a kind of rough, defiant hope in Springsteen's songs.
"He's hopeful rather than optimistic. 'Everybody has a reason to begin again,' he sings in 'Long Walk Home.' There's always a reason to go on.
"But it's a tough hope in a tough world —- a world that isn't, on the surface, getting better. There is a hopefulness there —- that we can turn things around and move in a more progressive direction."
Thursday, July 3, 2008
I do not feel compelled to write in this blog unless I either have what I think is important information to impart to my caring community, and/or to share some perspective connected with my "adventure." Until I sat down to write tonight, in my mind I had neither. As matters of fact, yesterday looked like Monday and Tuesday, in that I had my radiation treatment, walked on the Greenway with friends, and went to work. The only difference is that I attended a work-related meeting yesterday evening. It was a big deal because I would not have gone had I not felt up to it, and even then I had to plan my afternoon around resting and building up the energy to make the trip. But as I reflected upon the evening just now, what struck me is how incredibly normal it felt to me to be there. Sure, everyone there was especially happy to see me and vice versa, and I received all the hugs I needed and wanted; but it felt like a naturally-occurring event. That for whatever reason, I was there because I am meant to be there.
As for today, it was similar to last Thursday. Radiation followed by chemotherapy. It was still a long day, but what differed from last week is that I was not as frightened, having already experienced it. With all due respect to John, with whom I have spent many quality hours over these many weeks, including that first chemotherapy treatment, I was able to tolerate today's treatments without a problem, and enjoy the companionship of my friend who accompanied me.
So, without intending to generate any significant information or a (completely subjective) meaningful insight from these recent experiences, I believe that I am brought back around to The New Normal.
First, I have just completed a full week of treatment. I now have experience so I have some idea what to expect. Same with taking a walk and heading into the office. I can handle each of these things, and so can my extraordinary friends and colleagues.
Second, my meeting last night brought together my past, present, and future. This is a place where I wanted to be before this adventure began, where I wanted to be last night, and where I want to be in the future. This may be an unexpected insight. Perhaps in the future I will be choosing more places I want to be, rather than where I feel I should, or need to be.
Finally, I am in awe of the quality and quantity of the responses to my last posting. Thank you for the suggestions for filling my time and finding peace. As for the insights on faith and spirituality, I suspect that this will be a life-long quest. Which I hope spans a loooooong time.
In closing, I must remind you that I am high on steroids, which brings to mind Tigger and his choice of parting words. (Whatever, people. I'm allowed to do what I want here.)
TTFN
As for today, it was similar to last Thursday. Radiation followed by chemotherapy. It was still a long day, but what differed from last week is that I was not as frightened, having already experienced it. With all due respect to John, with whom I have spent many quality hours over these many weeks, including that first chemotherapy treatment, I was able to tolerate today's treatments without a problem, and enjoy the companionship of my friend who accompanied me.
So, without intending to generate any significant information or a (completely subjective) meaningful insight from these recent experiences, I believe that I am brought back around to The New Normal.
First, I have just completed a full week of treatment. I now have experience so I have some idea what to expect. Same with taking a walk and heading into the office. I can handle each of these things, and so can my extraordinary friends and colleagues.
Second, my meeting last night brought together my past, present, and future. This is a place where I wanted to be before this adventure began, where I wanted to be last night, and where I want to be in the future. This may be an unexpected insight. Perhaps in the future I will be choosing more places I want to be, rather than where I feel I should, or need to be.
Finally, I am in awe of the quality and quantity of the responses to my last posting. Thank you for the suggestions for filling my time and finding peace. As for the insights on faith and spirituality, I suspect that this will be a life-long quest. Which I hope spans a loooooong time.
In closing, I must remind you that I am high on steroids, which brings to mind Tigger and his choice of parting words. (Whatever, people. I'm allowed to do what I want here.)
TTFN
Tuesday, July 1, 2008
I have now had two days with some semblance of a routine. Treatment, walk on the Greenway, lunch, face time at the office, then home. I'm not so sure that I can keep this up, or that this best serves my needs. Treatment aside, each activity is something I want to do, but put it all together and it feels like a lot right now.
What I feel like I am most lacking is a place of peace - the place I want to go when I am too tired to do anything else. I nap, I meditate, but that does not fill the time. I love to read but have had a difficult time focusing on the many wonderful books that surround me. Television is not my thing, and although I love movies, I can only watch happy ones, and for just so long. It probably does not come as a surprise to any of you that prior to this fiasco that my preferred leisure activity involved movement of some sort. Bike, paddle, run, walk, snow ski, water ski, almost any type of exercise that tickled my fancy. I've never been a triathlete, but I always enjoyed the heck out of a day on the Nantahala, the ski slope, or biking the Greenway.
Cause for complaint or new opportunity?
Is my challenge due to a genetic time bomb or life lesson needed to be learned?
The result of environmental negligence or pure, unadulterated fate?
Many times over the last weeks I have been asked about my faith, and about my belief in a higher power. Of my friends, family and acquaintances, I can only predict with absolute certainty the response to that question from my dear friend MS. (I am confident that you know who you are and I don't want to single you out without your permission.)
Clearly, this is my journey, not yours. But, I must admit to being curious to see if there will be any serious and/or insightful responses to these queries. This topic is not meant to embarrass anyone, or elicit reluctant responses. I do assume, however, that these are not original questions, and that all of you have pondered these, or similar themes during your lives.
And, any suggestions for sedentary activities are more than welcome. Except needlepoint. Yuck. Sorry Vicki, but needlepoint is also not my thing.
What I feel like I am most lacking is a place of peace - the place I want to go when I am too tired to do anything else. I nap, I meditate, but that does not fill the time. I love to read but have had a difficult time focusing on the many wonderful books that surround me. Television is not my thing, and although I love movies, I can only watch happy ones, and for just so long. It probably does not come as a surprise to any of you that prior to this fiasco that my preferred leisure activity involved movement of some sort. Bike, paddle, run, walk, snow ski, water ski, almost any type of exercise that tickled my fancy. I've never been a triathlete, but I always enjoyed the heck out of a day on the Nantahala, the ski slope, or biking the Greenway.
Cause for complaint or new opportunity?
Is my challenge due to a genetic time bomb or life lesson needed to be learned?
The result of environmental negligence or pure, unadulterated fate?
Many times over the last weeks I have been asked about my faith, and about my belief in a higher power. Of my friends, family and acquaintances, I can only predict with absolute certainty the response to that question from my dear friend MS. (I am confident that you know who you are and I don't want to single you out without your permission.)
Clearly, this is my journey, not yours. But, I must admit to being curious to see if there will be any serious and/or insightful responses to these queries. This topic is not meant to embarrass anyone, or elicit reluctant responses. I do assume, however, that these are not original questions, and that all of you have pondered these, or similar themes during your lives.
And, any suggestions for sedentary activities are more than welcome. Except needlepoint. Yuck. Sorry Vicki, but needlepoint is also not my thing.
Sunday, June 29, 2008
Still Learning
Apparently, steroids enhance one's sense of well-being, and once the effects wear off the being does not feel as well.
So it is with me. It seems like once the effects of the steroids I received at the chemo treatment wore off, I was not quite as happy a camper as I had been on Friday. Luckily, this weekend I was surrounded by friends with warm hearts and loving souls. They propped me up on the deck of the lake house and nourished me with their wonderful food and tales that are still worth telling. I could close my eyes and listen to their stories, and join in when I felt like it. Many thanks for that special time.
I am still amazed by all the support that I have received since the end of May. Aside from this blog, there is a website with occasional updates and a schedule for providing food for my family and me. If you are interested, it is http://www.lotsahelpinghands.com/c/605295/
Looking ahead to this week, I am forced to maintain a day to day schedule. I know what I would like to do tomorrow, and what a 3 day weekend in the summer could look like, but I am consigned to do what I can.
I meant to thank Amy for the new photo added to the blog. Me at Canyon Ranch. Hopefully I will be back there soon.
Sweet dreams.
So it is with me. It seems like once the effects of the steroids I received at the chemo treatment wore off, I was not quite as happy a camper as I had been on Friday. Luckily, this weekend I was surrounded by friends with warm hearts and loving souls. They propped me up on the deck of the lake house and nourished me with their wonderful food and tales that are still worth telling. I could close my eyes and listen to their stories, and join in when I felt like it. Many thanks for that special time.
I am still amazed by all the support that I have received since the end of May. Aside from this blog, there is a website with occasional updates and a schedule for providing food for my family and me. If you are interested, it is http://www.lotsahelpinghands.com/c/605295/
Looking ahead to this week, I am forced to maintain a day to day schedule. I know what I would like to do tomorrow, and what a 3 day weekend in the summer could look like, but I am consigned to do what I can.
I meant to thank Amy for the new photo added to the blog. Me at Canyon Ranch. Hopefully I will be back there soon.
Sweet dreams.
Friday, June 27, 2008
Maybe today is the new "normal."
Radiation at 11:00 am, a brief shopping experience (for hats), and then on to the office for lunch and some administrative work. I'm feeling good, and thinking clearly. It has been a good day.
Next week's schedule will be different, as the only morning appointment available for radiation is at 9:30, so I will readjust my schedule.
In the meantime, I plan to enjoy the weekend, and hope all of you do the same.
Radiation at 11:00 am, a brief shopping experience (for hats), and then on to the office for lunch and some administrative work. I'm feeling good, and thinking clearly. It has been a good day.
Next week's schedule will be different, as the only morning appointment available for radiation is at 9:30, so I will readjust my schedule.
In the meantime, I plan to enjoy the weekend, and hope all of you do the same.
Thursday, June 26, 2008
First Treatment
In a nutshell, so far so good.
No problem with the radiation, which is very brief. It involves another very expensive machine with nice technicians but no shot. By far the most noticeable side effect is the black Sharpie dots and x's all over my chest.
The chemotherapy treatment was much more extensive. There are 4 drugs administered by IV prior to chemo - benadryl, tagamet, a steroid (decadron), and an anti-nausea drug (aloxi). That takes about an hour. Each chemo, and there are two, take about an hour to administer, also by IV. However, one of the chemos can cause significant allergic reaction, so for this first treatment the drip time was doubled, to make sure that I would be able to tolerate it. I had no allergic reactions, only a benadryl-induced slumber. We started with radiation at 11:00 am and didn't finish chemo until after 5:00 pm. Overall I'm feeling okay. Better yet, I left the treatment feeling hungry.
So, today reminded me of one of my favorite Carly Simon songs (before it was used in a ketchup commercial) - the Anticipation was worse than the event.
One down, my friends.
No problem with the radiation, which is very brief. It involves another very expensive machine with nice technicians but no shot. By far the most noticeable side effect is the black Sharpie dots and x's all over my chest.
The chemotherapy treatment was much more extensive. There are 4 drugs administered by IV prior to chemo - benadryl, tagamet, a steroid (decadron), and an anti-nausea drug (aloxi). That takes about an hour. Each chemo, and there are two, take about an hour to administer, also by IV. However, one of the chemos can cause significant allergic reaction, so for this first treatment the drip time was doubled, to make sure that I would be able to tolerate it. I had no allergic reactions, only a benadryl-induced slumber. We started with radiation at 11:00 am and didn't finish chemo until after 5:00 pm. Overall I'm feeling okay. Better yet, I left the treatment feeling hungry.
So, today reminded me of one of my favorite Carly Simon songs (before it was used in a ketchup commercial) - the Anticipation was worse than the event.
One down, my friends.
Tuesday, June 24, 2008
New Schedule
The show starts THIS THURSDAY instead of next Monday. Industrious Elyse wants to try to make Monday through Wednesday productive days. Don't expect to see me in court, or at 4 Way Meetings (for my collab colleagues), but I want to return to the office in some capacity.
Am I apprehensive? You bet.
And BTW, the chemo I will be receiving is carboplatin, which is in no way related to the precious metal that comprises the jewelry that I deserve after going through this s--t.
I'll be in touch :-)
Am I apprehensive? You bet.
And BTW, the chemo I will be receiving is carboplatin, which is in no way related to the precious metal that comprises the jewelry that I deserve after going through this s--t.
I'll be in touch :-)
Monday, June 23, 2008
Treatment Plan
Monday I begin the 7 week regimen of radiation, and weekly doses of carbo platinum and taxol, also for 7 weeks. There could be more chemotherapy, but it will depend on several contingencies that will be discussed at the end of the 7 weeks. Dubovsky (medical oncologist) prefers another 2 hits of chemotherapy 21 days apart, but again, it will depend on several factors. I will lose my hair (yuck), and if I do not start eating, Dr. D. is threatening to put in a feeding tube (yuckier). So, my goal between now and Monday is to gain no less than 5 lbs. Dr. D. recommends milkshakes, chocolate, Starbuck's Frappaccino in a bottle, and Bailey's Irish Cream. When I complained about the sugar, he told me I was too "rigid." Desperate times call for desperate measures, says he. Once the treatment begins, he expects that I will receive much of my nutrition from smoothies with all the protein additives I can find, including tofu, and protein powders.
Tomorrow I will be instructed on what to expect from chemotherapy (chemotherapy for dummies?), and have a few more x's drawn on my chest for the radiation. All in all, I am relieved that there is a plan, and my weight aside, I am more than ready to begin.
Sweet dreams, everyone.
Tomorrow I will be instructed on what to expect from chemotherapy (chemotherapy for dummies?), and have a few more x's drawn on my chest for the radiation. All in all, I am relieved that there is a plan, and my weight aside, I am more than ready to begin.
Sweet dreams, everyone.
Saturday, June 21, 2008
I just viewed for the first time the Lotsa Helping Hands website. I am overwhelmed by the number of volunteers. It was also nice to see the well-wishing comments on that site, as well.
According to the radiation oncologist, there are no dietary restrictions during treatment, but I may prefer drinking my meals at times. Of course, I won't know until I get started. I do think there could be some significant restrictions from the chemotherapy treatments. I will know more about that this week, so stay tuned. I will post the dietary info on this blog, as well as the Lotsa Helping Hands website.
I am looking forward to taking Brent to camp tomorrow. He is excited, and of course he's glad that I'm coming.
Hope you're enjoying the weekend, and the mild Atlanta weather.
xoxoxoxox
According to the radiation oncologist, there are no dietary restrictions during treatment, but I may prefer drinking my meals at times. Of course, I won't know until I get started. I do think there could be some significant restrictions from the chemotherapy treatments. I will know more about that this week, so stay tuned. I will post the dietary info on this blog, as well as the Lotsa Helping Hands website.
I am looking forward to taking Brent to camp tomorrow. He is excited, and of course he's glad that I'm coming.
Hope you're enjoying the weekend, and the mild Atlanta weather.
xoxoxoxox
Friday, June 20, 2008
A Better Day
What a roller coaster ride this has been.
I woke up today full of fear, hardly able to function. Today's visit from special friends meant so much to me, even if I struggled to be present with them.
This afternoon I met with the radiation oncologist and she was nothing but positive. She addressed all of my questions and concerns about treatment, about side effects, about my diagnosis, everything I could think of to ask. It looks like I will be getting a dose of radiation every week day for 7 (7!) weeks. She assured me, and reassured me again, that this is the protocol. This may cause fatigue, a rash, problems swallowing, a partially useless lung (I may still lose it anyway), but this, alone, will not cause hair loss, or any other dreaded side effects, real or imaginary. I will also be receiving chemotherapy treatment simultaneously. I am meeting with the oncologist on Monday, so I will have more information then. I was very upset after my other meeting with him, so I am apprehensive about that appointment. Nevertheless, having a concrete treatment plan, along with Dr. Wiggers' support have made a tremendous difference in my frame of mind.
After today's appointment, I was even feeling up to a visit to the offices of Aussenberg Waggoner LLP. (You may have heard of this ultra famous group of family law attorneys and staff. If you haven't, you should.) It was great to be there, to watch others enjoy Happy Hour even if I didn't partake, and take pleasure in the company of my colleagues. Depending upon the chemotherapy regimen, I am planning a return to the work force, albeit in a limited capacity.
I have also made plans to communicate with MD Anderson Medical Center in Houston. In the short term, I will get a second opinion (on records, only), but I will also establish a connection for future treatment or inquiries, if necessary.
So, I feel like I'm back in the saddle, or the oar boat, ready to paddle down this stream. Not sure how to explain that I'm excited about the prospect of weeks of dousing my body in various poisons, but it just feels right, at least for now.
My spirit is rejuvenated, even if my body still needs a lot of help.
Love to all.
I woke up today full of fear, hardly able to function. Today's visit from special friends meant so much to me, even if I struggled to be present with them.
This afternoon I met with the radiation oncologist and she was nothing but positive. She addressed all of my questions and concerns about treatment, about side effects, about my diagnosis, everything I could think of to ask. It looks like I will be getting a dose of radiation every week day for 7 (7!) weeks. She assured me, and reassured me again, that this is the protocol. This may cause fatigue, a rash, problems swallowing, a partially useless lung (I may still lose it anyway), but this, alone, will not cause hair loss, or any other dreaded side effects, real or imaginary. I will also be receiving chemotherapy treatment simultaneously. I am meeting with the oncologist on Monday, so I will have more information then. I was very upset after my other meeting with him, so I am apprehensive about that appointment. Nevertheless, having a concrete treatment plan, along with Dr. Wiggers' support have made a tremendous difference in my frame of mind.
After today's appointment, I was even feeling up to a visit to the offices of Aussenberg Waggoner LLP. (You may have heard of this ultra famous group of family law attorneys and staff. If you haven't, you should.) It was great to be there, to watch others enjoy Happy Hour even if I didn't partake, and take pleasure in the company of my colleagues. Depending upon the chemotherapy regimen, I am planning a return to the work force, albeit in a limited capacity.
I have also made plans to communicate with MD Anderson Medical Center in Houston. In the short term, I will get a second opinion (on records, only), but I will also establish a connection for future treatment or inquiries, if necessary.
So, I feel like I'm back in the saddle, or the oar boat, ready to paddle down this stream. Not sure how to explain that I'm excited about the prospect of weeks of dousing my body in various poisons, but it just feels right, at least for now.
My spirit is rejuvenated, even if my body still needs a lot of help.
Love to all.
Subscribe to:
Posts (Atom)