They will be them crazy banana flavored barium sulfate suspension drinks. Today, when I picked them up, they asked me what flavor I would like. Since it is summer and all, I asked if they had any margarita flavored ones. Who knows, maybe one day they will.
The schedule is as follows: Tomorrow - CT scan; Next Monday - Bone Marrow Biopsy; Next Tuesday - Pulmonary Function Test; July 26 - Blood Work and visit with the doc; August 10 - Annual follow up visit with the folks at MCV.
Then....there will be no more barium sulfate ingesting, CT scanning, pulmonary function testing, and bone marrow exploration until next year. I will still have blood work and a doctor visit every six months (poor, poor doctor). I graduate into the once a year testing for all the other stuff after this round. Then, I will only have to go through the complete round of testing in July 2013 and 2014; which will wrap it up and I will have official permission to use the other "C" word. Cured.
Cured bacon is also tasty.
Monday, July 9, 2012
Tuesday, June 12, 2012
Cringing Curmudgeon
To others, I have expressed my desire to one day be labeled a curmudgeon. Not so much in the miserly definition, but the surly one. Some (primarily those who have known me the longest) have responded, "You don't have to wait. You already are." Some (who haven't known me that long) have responded. "You are too young and too nice."
However, today I am feeling a bit curmudgeonly, especially when I read the news about a certain member of the media associated with a major network morning show. I wish her well and am sure she is a very nice person. I respect her for bringing her situation to light. I would like to respond to some comments I have read in the online CNN article (which appear in green type below).
" I've always been a fighter, and with all of your prayers and support, a winner," Roberts said in an online message Monday." - Nice comment from her. She is correct about the significance of prayer and support.
"Then a few weeks ago, during a rather unpleasant procedure to extract bone marrow for testing, I received word that I would interview President Obama the next day," Roberts said. "The combination of landing the biggest interview of my career and having a drill in my back.." - This is the kind of dramatic statement that can hinder others from wanting to undergo a bone marrow biopsy. While it isn't the most pleasant of experiences, it isn't the worst thing that can happen in life (I've had 7 since November 2008 and am scheduled for 3 more between now and July 2014) and is a very critical diagnostic procedure to determine the extent of the disease. There is a drilling process involved, but it does not require an industrial 20 volt variable speed reversing drill with impact driving capabilities. Trust me, it's no walk in the park for the person who had to administer it. They understand that it can be uncomfortable, and they do all they can to make sure the patient is comfortable throughout the procedure. As for me, I do not experience prolonged discomfort throughout the procedure, but rather, a few times of discomfort that are equivalent in discomfort to hitting your funny bone. For myself, prior to my first bone marrow biopsy, the worst part was imagining what was going to happen vs. what actually happened.
It can be brought on by chemotherapy and radiation, treatments that Roberts underwent after her breast cancer diagnosis. "Sometimes the treatment for cancer can cause other serious medical problems," She said - Note the second word in the statement, "can." It is likely that her previous treatments could have lead to her current condition, but I would like her to state, if knowing what she knows now and she had to do it all over again, what direction would she take with her treatment? I know that the possibility exists that I may face some "benefits" from my treatments down the road. However, at the time of my diagnosis, I felt so lousy, I was willing to do whatever it took to feel better. In an ideal world, chemotherapy and radiation treatments would not exist. The immune system would attack and end cancer in the body. Making broad statements that, yet again could steer someone away from adding quality time to their life is borderline irresponsible for someone in a position of responsibility to report facts to the public. I understand the emotion involved when someone is diagnosed with a catastrophic illness. However, when you are in a position that your statements can be distributed to the masses, measure your words carefully or keep them entirely in the bucket.
While information found online about MDS can be "some scary stuff," Roberts said her doctors told her it doesn't apply to her. "They say I'm younger and fitter than most people who confront this disease and will be cured." - Geez already. You work for a news organization and you went online? Don't you have medical talking heads on staff? Please tell me you went to legitimate sources. And the whole "younger and fitter" stuff is good news for you, but what about older folks? What would be your recommendation for them?
That search is conducted largely through the National Marrow Donor Program, which maintains a registry of bone-marrow donors. Sally-Ann Roberts said her sister is hoping to draw attention to the registry and encourage people to join."It's very simple to be part of the registry," she said. "I just had a swab, a cheek swab, and they test that and that's how they determine that." - Thank you. Something good can come out of all this if you say these kind of things. And just to help you out, the legitimate web site to learn more about marrow donations is: www.marrow.org
I will never minimize the impact of a medical diagnosis on someone else, no matter whether the diagnosis is a common cold or life threatening illness. However, as someone who enjoys live theater, I choose to experience drama while gazing at a stage.
However, today I am feeling a bit curmudgeonly, especially when I read the news about a certain member of the media associated with a major network morning show. I wish her well and am sure she is a very nice person. I respect her for bringing her situation to light. I would like to respond to some comments I have read in the online CNN article (which appear in green type below).
" I've always been a fighter, and with all of your prayers and support, a winner," Roberts said in an online message Monday." - Nice comment from her. She is correct about the significance of prayer and support.
"Then a few weeks ago, during a rather unpleasant procedure to extract bone marrow for testing, I received word that I would interview President Obama the next day," Roberts said. "The combination of landing the biggest interview of my career and having a drill in my back.." - This is the kind of dramatic statement that can hinder others from wanting to undergo a bone marrow biopsy. While it isn't the most pleasant of experiences, it isn't the worst thing that can happen in life (I've had 7 since November 2008 and am scheduled for 3 more between now and July 2014) and is a very critical diagnostic procedure to determine the extent of the disease. There is a drilling process involved, but it does not require an industrial 20 volt variable speed reversing drill with impact driving capabilities. Trust me, it's no walk in the park for the person who had to administer it. They understand that it can be uncomfortable, and they do all they can to make sure the patient is comfortable throughout the procedure. As for me, I do not experience prolonged discomfort throughout the procedure, but rather, a few times of discomfort that are equivalent in discomfort to hitting your funny bone. For myself, prior to my first bone marrow biopsy, the worst part was imagining what was going to happen vs. what actually happened.
It can be brought on by chemotherapy and radiation, treatments that Roberts underwent after her breast cancer diagnosis. "Sometimes the treatment for cancer can cause other serious medical problems," She said - Note the second word in the statement, "can." It is likely that her previous treatments could have lead to her current condition, but I would like her to state, if knowing what she knows now and she had to do it all over again, what direction would she take with her treatment? I know that the possibility exists that I may face some "benefits" from my treatments down the road. However, at the time of my diagnosis, I felt so lousy, I was willing to do whatever it took to feel better. In an ideal world, chemotherapy and radiation treatments would not exist. The immune system would attack and end cancer in the body. Making broad statements that, yet again could steer someone away from adding quality time to their life is borderline irresponsible for someone in a position of responsibility to report facts to the public. I understand the emotion involved when someone is diagnosed with a catastrophic illness. However, when you are in a position that your statements can be distributed to the masses, measure your words carefully or keep them entirely in the bucket.
While information found online about MDS can be "some scary stuff," Roberts said her doctors told her it doesn't apply to her. "They say I'm younger and fitter than most people who confront this disease and will be cured." - Geez already. You work for a news organization and you went online? Don't you have medical talking heads on staff? Please tell me you went to legitimate sources. And the whole "younger and fitter" stuff is good news for you, but what about older folks? What would be your recommendation for them?
That search is conducted largely through the National Marrow Donor Program, which maintains a registry of bone-marrow donors. Sally-Ann Roberts said her sister is hoping to draw attention to the registry and encourage people to join."It's very simple to be part of the registry," she said. "I just had a swab, a cheek swab, and they test that and that's how they determine that." - Thank you. Something good can come out of all this if you say these kind of things. And just to help you out, the legitimate web site to learn more about marrow donations is: www.marrow.org
I will never minimize the impact of a medical diagnosis on someone else, no matter whether the diagnosis is a common cold or life threatening illness. However, as someone who enjoys live theater, I choose to experience drama while gazing at a stage.
Wednesday, June 6, 2012
Was It Just Me That Heard That?
Tonight, I saw a commercial on TV for a cancer treatment center that I will not name here. I consider myself somewhat knowledgeable of what they speak. I wonder how much of what they present in their commercial is lost on the general public. I would suspect that due to the saturation of their commercials, should someone be diagnosed with a form of cancer, if that particular facility is not available in their area, they may consider that facility for a second opinion.
However, one part of their commercial jumped out at me, causing me to follow up. They mention that on their website, you can find survival rates for various cancers. I checked it out. Some are listed on their website (and that part of their website is not necessarily easy to find) and a large amount of them are not. Mine was not. I did peruse the stomach cancer link and noted that the statistics are only of their patients and the time period is from 2000-2005.
That doesn't work for me. That is a period of 7-12 years ago. Too much has happened in cancer research since then.
I recently spoke to someone who was about to begin chemotherapy and radiation treatments for throat cancer. I advised him to 1) stay off the internet except for sites recommended by his doctor; 2) do not read published material that has a copyright date of more than 2-3 years in the past as things are changing that quickly; 3) do not concern yourself about how someone else reacted to treatments that may be similar to yours as the treatment process may not be personalized to the individual, but since there are enough variables in physical makeup between each patient, "portion sizes" and reactions will vary by patient.
I was once annoyed (and still am) by what cancer does to the individual. But what troubles me even more these days is what individuals, who listen to erroneous information, allow cancer to do themselves.
"We're just knocked out.
We heard about the sell out.
You gotta get an album out.
You owe it to the people.
We're so happy we can hardly count.
Everybody else is just green,
Have you seen the chart?
It's a helluva start,
It could be made into a monster
If we all pull together as a team.
And did we tell you the name of the game, boy,
We call it 'riding the gravy train' " - Roger Waters
However, one part of their commercial jumped out at me, causing me to follow up. They mention that on their website, you can find survival rates for various cancers. I checked it out. Some are listed on their website (and that part of their website is not necessarily easy to find) and a large amount of them are not. Mine was not. I did peruse the stomach cancer link and noted that the statistics are only of their patients and the time period is from 2000-2005.
That doesn't work for me. That is a period of 7-12 years ago. Too much has happened in cancer research since then.
I recently spoke to someone who was about to begin chemotherapy and radiation treatments for throat cancer. I advised him to 1) stay off the internet except for sites recommended by his doctor; 2) do not read published material that has a copyright date of more than 2-3 years in the past as things are changing that quickly; 3) do not concern yourself about how someone else reacted to treatments that may be similar to yours as the treatment process may not be personalized to the individual, but since there are enough variables in physical makeup between each patient, "portion sizes" and reactions will vary by patient.
I was once annoyed (and still am) by what cancer does to the individual. But what troubles me even more these days is what individuals, who listen to erroneous information, allow cancer to do themselves.
"We're just knocked out.
We heard about the sell out.
You gotta get an album out.
You owe it to the people.
We're so happy we can hardly count.
Everybody else is just green,
Have you seen the chart?
It's a helluva start,
It could be made into a monster
If we all pull together as a team.
And did we tell you the name of the game, boy,
We call it 'riding the gravy train' " - Roger Waters
Monday, April 30, 2012
Read All About It
As a result of my own thoughts and conversations I've had with others, I've wondered sometimes whether it was wise to put the whole "alien experience" out there. In a group setting once, I heard someone say, "Prospective employers can search for me on the web and land on my blog, journal, etc. and then not hire me because they can see my medical history." When I heard that statement, I was already 3 years into my blog, so I guess it was too late for me to do anything about it.
Later in the day I had an opportunity to have a one on one conversation with the person who made that statement and I told them why I started my blog and how it evolved into something else. I made the idealistic statement,".. that if someone was going to refuse to hire me based on my medical status and not my talent and skills, they didn't deserve me anyway."
The other week, during some down time, I was searching for pictures online and naturally got sidetracked. I decided to search for pictures of Greg Frazee. There are plenty of pictures to see - not all of them me, but..in the initial page, there were pictures of me. If you click on those pictures, the word "cancer" is associated with them.
Guess that makes me a sitting duck.
However, I equate my blog evolution with that of how a person evolves in their faith journey. Some folks come about their faith to save themselves, to punch the ticket of salvation, in hopes of better days ahead and a reservation at the Casa Grande in the sky. That's fine and it works. However, there has to be something beyond just that.
I was pretty self centered about the purpose of the blog at first. It was to save me time spent on the phone and to prevent having to answer the same questions over and over again. It worked. But the blog grew beyond that. As I continued, folks told me the blog was helpful to them so they would know not only how to approach me, but also how to help others. Funny, as time went on, I ended up talking more about what was going on and I found that people didn't step lightly about the subject around me. I didn't want them to.
For now, this duck will continue to sit here, quack out loud, bring others to the pond and show them not only how to float in the pond, but how to swim in it.
With no regrets.
Later in the day I had an opportunity to have a one on one conversation with the person who made that statement and I told them why I started my blog and how it evolved into something else. I made the idealistic statement,".. that if someone was going to refuse to hire me based on my medical status and not my talent and skills, they didn't deserve me anyway."
The other week, during some down time, I was searching for pictures online and naturally got sidetracked. I decided to search for pictures of Greg Frazee. There are plenty of pictures to see - not all of them me, but..in the initial page, there were pictures of me. If you click on those pictures, the word "cancer" is associated with them.
Guess that makes me a sitting duck.
However, I equate my blog evolution with that of how a person evolves in their faith journey. Some folks come about their faith to save themselves, to punch the ticket of salvation, in hopes of better days ahead and a reservation at the Casa Grande in the sky. That's fine and it works. However, there has to be something beyond just that.
I was pretty self centered about the purpose of the blog at first. It was to save me time spent on the phone and to prevent having to answer the same questions over and over again. It worked. But the blog grew beyond that. As I continued, folks told me the blog was helpful to them so they would know not only how to approach me, but also how to help others. Funny, as time went on, I ended up talking more about what was going on and I found that people didn't step lightly about the subject around me. I didn't want them to.
For now, this duck will continue to sit here, quack out loud, bring others to the pond and show them not only how to float in the pond, but how to swim in it.
With no regrets.
Saturday, March 17, 2012
It's Worth Repeating
Celtic shamrock irish flag 2 by ~PeAcE-88©2010-2012
Go bhfana í ngrá linn,
Iad siúd atá í ngrá linn.
Iad siúd nach bhfuil,
Go gcasa Dia a gcroíthe.
Agus muna gcasann Sé a gcroíthe
Go gcasa Sé caol na coise acu
Go n-aithneoimid iad as a mbacadaíl.
Thursday, March 8, 2012
One Way Or Another
Recently I purchased a bottle of vitamins. Naturally, I checked the expiration date on the bottle before I purchased them.
Break for funny story here. Once, when I was receiving an IVIG infusion, the nurse left the box that contained the bottle of chemistry on the table by my side. Naturally, I was curious about the composition and infusion protocol. After gaining that knowledge, I thought to myself, wouldn't it be funny if..... So, when my nurse was across the room, I asked (loud enough for everyone in the room to hear), "How long after the expiration date are you allowed to use this stuff?" I received a benediction from her and some funny looks from the other patients in the room. To this day, I insist it took the edge off of the mood in the room. My story, and I'm sticking to it.
Tonight, I was going through my cabinets and encountered some saltine crackers that had not been opened since the beginning of my alien sabbatical, three and a half years ago. Looking for an expiration date, I did not see one and thought I would try one of the crackers. The expiration date may not have been on the box, but after one taste, it was clear the crackers had expired.
I guess that was another sign that things associated with that time of my life are departing.
Ironically, the vitamin bottle pictured above displays the date when I will be considered "cured." When I noticed the correlation, I was telling someone that I had purchased something that is now in that window. Other things that I have purchased did not have expiration dates that far out. This bottle of vitamins does and it lets me know that the cure date is indeed on the horizon.
However, when talking to the individual I mentioned in the previous paragraph, I couldn't resist saying, "You know, either the vitamins or me could be expired by then."
Dark humor, I know. But hey, sometimes you have to find the humor where you can.
The following is out of context, but it's not the first time words from this book have been used out of context. My usage is for fun. Not for judgement or derision.
The Lord will laugh at him, for he sees that his day is coming. - Psalm 37:13
Tuesday, February 14, 2012
Way Down Deep
Not really all that far does one have to go to extract bone marrow. Probably less than an inch.
Last Tuesday was the scheduled bone marrow biopsy for this round of follow up. If I calculate correctly, I have had 7 of them since November 2008 and only have 3 more to go between now and August 2014 (another one in 6 months and then only one in 2013 and one in 2014) when I will be considered officially cured of the alien invasion.
I was asked on Sunday if I had heard back from the results of the bone marrow biopsy. I replied that I hadn't and I normally don't worry about it unless the doctor's office calls me. If a week or two passes without hearing from them, all is well.
Remind yourself to keep breathing as you read the next part.
Monday, the caller ID on my phone indicated a call from the doctor's office. Before I could say anything other than "Hello," the medical assistant to my doctor said, "I'm calling you with the following message from your doctor. You have beautiful bone marrow." Immediately after that, the verbal hijinks began.
That's how it works for me. If they had paused and said, "The doctor would like to meet with you, can we schedule an appointment," there would have been anxiety.
However, being the pros that they are, they know how to make and deliver those calls before anxiety even has an opportunity to peek in the door.
First down at 10 at midfield....
Last Tuesday was the scheduled bone marrow biopsy for this round of follow up. If I calculate correctly, I have had 7 of them since November 2008 and only have 3 more to go between now and August 2014 (another one in 6 months and then only one in 2013 and one in 2014) when I will be considered officially cured of the alien invasion.
I was asked on Sunday if I had heard back from the results of the bone marrow biopsy. I replied that I hadn't and I normally don't worry about it unless the doctor's office calls me. If a week or two passes without hearing from them, all is well.
Remind yourself to keep breathing as you read the next part.
Monday, the caller ID on my phone indicated a call from the doctor's office. Before I could say anything other than "Hello," the medical assistant to my doctor said, "I'm calling you with the following message from your doctor. You have beautiful bone marrow." Immediately after that, the verbal hijinks began.
That's how it works for me. If they had paused and said, "The doctor would like to meet with you, can we schedule an appointment," there would have been anxiety.
However, being the pros that they are, they know how to make and deliver those calls before anxiety even has an opportunity to peek in the door.
First down at 10 at midfield....
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