It’s been a stressful couple of weeks to say the least. The saga of my bilirubum count continues. Since my last treatment on September 25th my bilirubin levels have been going up and down. When my total is down my direct is up and vise versa. A sure sign of Gilbert’s Syndrome. Should be interesting when the test comes back ( in approx 4-6 weeks) to see if it’s confirmed that I have this condition.
This week’s blood test came in right at the cutoff so I’m cleared for chemo tomorrow. I’ll also see the doctor and need to get some things clarified with this trial. The way it was explained to me last week that even if I have Gilberts, it would have needed to been documented BEFORE I started on the trial. Considering only 6% have this condition (and until now I never heard of it) who would have thought to test for it. Doesn’t sound logical but when did medicine and logic ever cross paths. Odds are that getting both numbers in line to meet the requirement are not good. So you’re probably wondering why this hadn’t come up in the past – well because until recently I was only tested for the Bilirubin Total and not the Direct.
My doctor did share with me that she thought this trial drug was going to be released soon so hopefully we can hang on until then. My good friend Vicki who is also an Oncologist also suggested that I may want to apply for “compassionate care” with the trial which basically lets them give it to me but the data will not be used for the trial.
Stayed tuned for part three of this never ending tale.
Until then – Keep On Dancin’
Tuesday, October 30, 2012
Wednesday, October 24, 2012
Wednesday, October 24, 2012
Another big disappointment today as I received a call telling me no chemo again this week.
Yesterday morning was spent seeing the liver specialist. After reviewing my records and examining me he declared that he see’s no evidence of liver disease (besides the cancer). It is his opinion that I may have Gilbert’s Syndrome which affects 6% of the population. Basically it’s a non-fatal genetic condition that causes a higher then normal bilirubin level. This was also my doctor’s opinion when I spoke to her last week. I had blood drawn to confirm this diagnosis. In the mean time because my level is higher then normal until this is confirmed or the level drops I cannot continue with the trial chemo.
To say I’m disappointed, stressed, mad, etc is putting it mildly. I now have not had chemo for 5 weeks which makes me worried that all the good it has done in the last 9 months is being reversed. For someone like me who takes the bull by the horns I feel helpless because there’s nothing I could do except wait.
Not much else to report and to be honest I’m so frustrated I don’t even feel like writing.
Until I know more….
Keep on Dancin’
Yesterday morning was spent seeing the liver specialist. After reviewing my records and examining me he declared that he see’s no evidence of liver disease (besides the cancer). It is his opinion that I may have Gilbert’s Syndrome which affects 6% of the population. Basically it’s a non-fatal genetic condition that causes a higher then normal bilirubin level. This was also my doctor’s opinion when I spoke to her last week. I had blood drawn to confirm this diagnosis. In the mean time because my level is higher then normal until this is confirmed or the level drops I cannot continue with the trial chemo.
To say I’m disappointed, stressed, mad, etc is putting it mildly. I now have not had chemo for 5 weeks which makes me worried that all the good it has done in the last 9 months is being reversed. For someone like me who takes the bull by the horns I feel helpless because there’s nothing I could do except wait.
Not much else to report and to be honest I’m so frustrated I don’t even feel like writing.
Until I know more….
Keep on Dancin’
Thursday, October 18, 2012
Thursday, October 18, 2012
Why is nothing easy? All I want is some normality back in my life. I guess I gave that up 2.5 years ago when this all started.
No chemo yesterday. It seems my bilirubin levels were up and I didn't have the energy to argue. If you remember from my post last month I had the same problem. For those not familiar with what bilirubin is here is some info:
Bilirubin (formerly referred to as hematoidin) is the yellow breakdown product of normal heme catabolism. Heme is found in hemoglobin, a principal component of red blood cells. Bilirubin is excreted in bile and urine, and elevated levels may indicate certain diseases. It is responsible for the yellow color of bruises, the yellow color of urine (via its reduced breakdown product, urobilin), the brown color of feces (via its conversion to stercobilin), and the yellow discoloration in jaundice.
In a nut shell high bilirubin can be an indication of liver damage.
The doctor called me this morning to see how I was ( I think she was more interested in how I was doing mentally rather then physically since she knows I hate changes in my schedule). Although she said I just may have a higher level then most, she still needs to be safe and have it checked out. I have an appointment Tuesday with a Liver Specialist to get a second opinion.
I did share my thoughts on it and thankfully she is open minded and listened to what I had to say. Three weeks ago when my level showed high I did a little research on how to reduce the levels. Basically lots of fruits and veggies, orange juice, low fat meats and no fired or spicy foods. Very similar to a diet you would see for gallbladder problems which makes sense since the liver and gallbladder work together. In less then one week of sticking to this diet my level went from 2.3 to 1.8. The second week it went down to 1.7. The third week I got lazy and didn't follow it like I should have and it shot up to 2.4. I have a blood test scheduled for Monday. I plan on sticking to this regiment and hopefully it will show a reduction. My doctor was very open minded to the idea so we'll see what happens next week.
A bit of good news is that the CT scan I had on Tuesday showed stable - no change.
Until I have more to share I remain strong, positive and ready to fight.
Keep on Dancin'
No chemo yesterday. It seems my bilirubin levels were up and I didn't have the energy to argue. If you remember from my post last month I had the same problem. For those not familiar with what bilirubin is here is some info:
Bilirubin (formerly referred to as hematoidin) is the yellow breakdown product of normal heme catabolism. Heme is found in hemoglobin, a principal component of red blood cells. Bilirubin is excreted in bile and urine, and elevated levels may indicate certain diseases. It is responsible for the yellow color of bruises, the yellow color of urine (via its reduced breakdown product, urobilin), the brown color of feces (via its conversion to stercobilin), and the yellow discoloration in jaundice.
In a nut shell high bilirubin can be an indication of liver damage.
The doctor called me this morning to see how I was ( I think she was more interested in how I was doing mentally rather then physically since she knows I hate changes in my schedule). Although she said I just may have a higher level then most, she still needs to be safe and have it checked out. I have an appointment Tuesday with a Liver Specialist to get a second opinion.
I did share my thoughts on it and thankfully she is open minded and listened to what I had to say. Three weeks ago when my level showed high I did a little research on how to reduce the levels. Basically lots of fruits and veggies, orange juice, low fat meats and no fired or spicy foods. Very similar to a diet you would see for gallbladder problems which makes sense since the liver and gallbladder work together. In less then one week of sticking to this diet my level went from 2.3 to 1.8. The second week it went down to 1.7. The third week I got lazy and didn't follow it like I should have and it shot up to 2.4. I have a blood test scheduled for Monday. I plan on sticking to this regiment and hopefully it will show a reduction. My doctor was very open minded to the idea so we'll see what happens next week.
A bit of good news is that the CT scan I had on Tuesday showed stable - no change.
Until I have more to share I remain strong, positive and ready to fight.
Keep on Dancin'
Friday, September 28, 2012
Friday, September 28, 2012
Thinking Outside the Box
Over the years medicine has somehow become “for-profit” and the days of the “non-profit” hospitals have fallen to the wayside. You see more and more administrators vs. actual caregivers (i.e. doctors and nurses). So it’s amazing to me that although they have embraced the business-way of thinking and wanting to see the bottom line increase, they haven’t quite caught on to the common sense approach to looking at things. In medicine I am finding that it’s either black or white. There is no room for gray or even multi-color thinking.
Case in point – I arrived for my chemo appointment on Wednesday and checked in as usual. I was to see the doctor first and then go over for chemo afterward. Because my chemo is an experimental drug it is not mixed in the Cancer Center Pharmacy. It is done in another U of C pharmacy dedicated to research a few blocks away. Due to the cost of the drug (my guess is +$50,000 per treatment) they will not call in the order until I physically show up. I have learned to speed up things I go over to the Infusion area and let them know I’m there and seeing the doctor first otherwise I could wait and have waited up to 2.5 hours and a 2:00 appointment turns into a 4:30 appointment. When I checked in I was told the doctor cleared my for chemo based on the blood work that was done the day before and faxed to her that morning.
Because U of C is a teaching hospital and my doctor is a Professor of Medicine and Director of Medical Oncology she routinely has Residence and Fellows working with her. (A Fellow is a doctor who is pursing a specialized field). As I wait to see my doctor one of the Fellows working with her comes in and starts explaining my blood results. Not that I’m a brain surgeon but after a while you get familiar with what things mean and the terminology so I engage her in a conversation on what she is telling me. Unfortunately she takes this as a threat instead of a well informed patient who has taken charge of her medical treatment and now has to assert herself even more. She points out my Bilirubin is high of which I reply it has been as high in the past. Her reply - “well maybe you shouldn’t have chemo today, I’ll talk to Dr. F”.
After a few minutes my doctor walks in (a little sheepishly) and says that the Bilirubin is a concern and she needs to check protocol for the trial. So they both leave and a little while later the Fellow comes and announces they aren’t going to do the treatment today and I should come back next week to make sure everything is normal. OK, I admit that now I’m mad and tell the Fellow that I don’t have time to waste by coming back next week. I think she was a little taken back and didn’t know what to say so she said she would get my doctor to come back and talk to me. My first question was why, when they had the blood test at 8AM that morning and Infusion has told me I was cleared for chemo was there a change in their thinking. Of course there was no good reasoning and a lot of dancing around the question.
OK – here’s where the theme of this weeks blog comes into play. What I failed to mention that the other numbers measuring liver function (and was calculated into the Bilirubin count) showed being normal or slightly out of range. Nothing stood out as being a problem. So using my business/engineering background I had to ask why didn’t they re-run the test in case the data was incorrect. To me this is a “no brainer”. The response was that it took 2 hours to get the lab to process blood samples (yes – a major hospital takes 2 hours to run blood work which is why I have the test done offsite the day before). My response back was I’d rather wait 2 hours then to come back the following week. So it was agreed that I would have another blood draw to confirm the results.
After the draw I went back to the infusion area to wait for the results. Thanks to one of the nurses, Susan, who I’ve known the whole time I’ve been going she kept calling the lab to get the results STAT. The next I know they are calling me into the Infusion area because “surprise” my test results have improved.
There of course is a lot more to this story. Why did my doctor change her view from looking at the results in the morning until I saw her at 1:30? My guess is that she knows me (and my medical history) and although the count was higher then normal knew I could tolerate the treatment. Because the Fellow questioned it my doctor had no choice then to follow protocol.
Even though this whole situation was very frustrating I still can’t comprehend why the first thought would have been to re-run the test rather then send me home. Medical professionals no matter how much they want to turn medicine into a business still cannot understand thinking outside the box.
The good part of all of this was it gave me material for the blog.
Here’s hoping that some day intelligence and common sense will meet.
Keep on Dancin’
Over the years medicine has somehow become “for-profit” and the days of the “non-profit” hospitals have fallen to the wayside. You see more and more administrators vs. actual caregivers (i.e. doctors and nurses). So it’s amazing to me that although they have embraced the business-way of thinking and wanting to see the bottom line increase, they haven’t quite caught on to the common sense approach to looking at things. In medicine I am finding that it’s either black or white. There is no room for gray or even multi-color thinking.
Case in point – I arrived for my chemo appointment on Wednesday and checked in as usual. I was to see the doctor first and then go over for chemo afterward. Because my chemo is an experimental drug it is not mixed in the Cancer Center Pharmacy. It is done in another U of C pharmacy dedicated to research a few blocks away. Due to the cost of the drug (my guess is +$50,000 per treatment) they will not call in the order until I physically show up. I have learned to speed up things I go over to the Infusion area and let them know I’m there and seeing the doctor first otherwise I could wait and have waited up to 2.5 hours and a 2:00 appointment turns into a 4:30 appointment. When I checked in I was told the doctor cleared my for chemo based on the blood work that was done the day before and faxed to her that morning.
Because U of C is a teaching hospital and my doctor is a Professor of Medicine and Director of Medical Oncology she routinely has Residence and Fellows working with her. (A Fellow is a doctor who is pursing a specialized field). As I wait to see my doctor one of the Fellows working with her comes in and starts explaining my blood results. Not that I’m a brain surgeon but after a while you get familiar with what things mean and the terminology so I engage her in a conversation on what she is telling me. Unfortunately she takes this as a threat instead of a well informed patient who has taken charge of her medical treatment and now has to assert herself even more. She points out my Bilirubin is high of which I reply it has been as high in the past. Her reply - “well maybe you shouldn’t have chemo today, I’ll talk to Dr. F”.
After a few minutes my doctor walks in (a little sheepishly) and says that the Bilirubin is a concern and she needs to check protocol for the trial. So they both leave and a little while later the Fellow comes and announces they aren’t going to do the treatment today and I should come back next week to make sure everything is normal. OK, I admit that now I’m mad and tell the Fellow that I don’t have time to waste by coming back next week. I think she was a little taken back and didn’t know what to say so she said she would get my doctor to come back and talk to me. My first question was why, when they had the blood test at 8AM that morning and Infusion has told me I was cleared for chemo was there a change in their thinking. Of course there was no good reasoning and a lot of dancing around the question.
OK – here’s where the theme of this weeks blog comes into play. What I failed to mention that the other numbers measuring liver function (and was calculated into the Bilirubin count) showed being normal or slightly out of range. Nothing stood out as being a problem. So using my business/engineering background I had to ask why didn’t they re-run the test in case the data was incorrect. To me this is a “no brainer”. The response was that it took 2 hours to get the lab to process blood samples (yes – a major hospital takes 2 hours to run blood work which is why I have the test done offsite the day before). My response back was I’d rather wait 2 hours then to come back the following week. So it was agreed that I would have another blood draw to confirm the results.
After the draw I went back to the infusion area to wait for the results. Thanks to one of the nurses, Susan, who I’ve known the whole time I’ve been going she kept calling the lab to get the results STAT. The next I know they are calling me into the Infusion area because “surprise” my test results have improved.
There of course is a lot more to this story. Why did my doctor change her view from looking at the results in the morning until I saw her at 1:30? My guess is that she knows me (and my medical history) and although the count was higher then normal knew I could tolerate the treatment. Because the Fellow questioned it my doctor had no choice then to follow protocol.
Even though this whole situation was very frustrating I still can’t comprehend why the first thought would have been to re-run the test rather then send me home. Medical professionals no matter how much they want to turn medicine into a business still cannot understand thinking outside the box.
The good part of all of this was it gave me material for the blog.
Here’s hoping that some day intelligence and common sense will meet.
Keep on Dancin’
Wednesday, September 12, 2012
Wednesday, September 12, 2012
I'm sorry I haven't posted anything sooner but between not feeling good and being super busy I haven't had a chance to gather my thoughts.
I had my CT Scan last week Tuesday. Imagine my surprise when the CT Tech told my I was "famous" within their department due to the last scan I had and the exploding IV (see posting around Aug 16 for more details). Seems they had a big department meeting and changed IV protocol due the little mishap. Glad I'm famous for something. CT scan went without a hitch and I was in and out in 30 minutes.
Chemo was the next day. I have to admit I nervously sat waiting for the doctor and the results trying to keep a brave face. Imagine my relief when the doctor told me that the tumors in my liver, lung and chest area showed shrinking. It had stayed stable for the last several months and I was happy with that. I had thought that maybe the chemo had met it's match and was just holding off the enemy. Remember stable is good. I'm never going to complain about stable. But shrinking is better - buys me more time. As I said before, although relieved and happy I don't get too excited since I know how fast things could change and knock you off that high. Let's just all put on our party shoes and do a quiet little happy dance and then back down to business,
Unfortunately they forgot to schedule an ECHO and I have to go back Monday to have it done.
Otherwise I've been tired and have had flu like symptoms which may be due to the Xgeva they give me for the bones.
Until I have more to tell you - enjoy the end of summer before we ave to trade in our flip flops for Uggs!
Keep on Dancin'
I had my CT Scan last week Tuesday. Imagine my surprise when the CT Tech told my I was "famous" within their department due to the last scan I had and the exploding IV (see posting around Aug 16 for more details). Seems they had a big department meeting and changed IV protocol due the little mishap. Glad I'm famous for something. CT scan went without a hitch and I was in and out in 30 minutes.
Chemo was the next day. I have to admit I nervously sat waiting for the doctor and the results trying to keep a brave face. Imagine my relief when the doctor told me that the tumors in my liver, lung and chest area showed shrinking. It had stayed stable for the last several months and I was happy with that. I had thought that maybe the chemo had met it's match and was just holding off the enemy. Remember stable is good. I'm never going to complain about stable. But shrinking is better - buys me more time. As I said before, although relieved and happy I don't get too excited since I know how fast things could change and knock you off that high. Let's just all put on our party shoes and do a quiet little happy dance and then back down to business,
Unfortunately they forgot to schedule an ECHO and I have to go back Monday to have it done.
Otherwise I've been tired and have had flu like symptoms which may be due to the Xgeva they give me for the bones.
Until I have more to tell you - enjoy the end of summer before we ave to trade in our flip flops for Uggs!
Keep on Dancin'
Friday, August 31, 2012
Friday, August 31, 2012
It's hard to explain how I feel as a CT scan is nearing. Even after 2+ years of this I still feel a little anxious not knowing what the outcome will be. Let's face it, this is my future so it's hard to shrug off as "another test". I try to stay positive and confident. Keeping busy is my best friend. No time to think about it.
Keep your fingers crossed. Tuesday is the test and I see the doctor and have chemo on Wednesday. All I could do is hope for the best.
I try to remember:
Until I have more news, have a great holiday weekend!
Keep on Dancin'
Keep your fingers crossed. Tuesday is the test and I see the doctor and have chemo on Wednesday. All I could do is hope for the best.
I try to remember:
Until I have more news, have a great holiday weekend!
Keep on Dancin'
Monday, August 27, 2012
Monday, August 27, 2012
It's been a crazy few weeks. As many of you know we had our 9th Annual Golf Outing to raise money for breast cancer, After losing Y-Me in July we selected Gilda's Club as our beneficiary,
We couldn't have asked for a better day. Weather was beautiful and course was in good condition. We had a record 125 participants this year and raised over $10,000,
I'd like to thank all our family and friends for coming out and being a part of the day. We couldn't do it without all your support.
Special thanks to my volunteers who kept things moving - Carol Lucht, Wendy Shahrikian, Roxanne Klingenmeyer, Cheryl Balncas, Mary Ann Zurawski, Kathy Huro, Courtney Huro, Megan Huro, Kevin Michelini, Jamie Hezja, Cindy Michelini, Jamie Michelini and Karen McAra.
Hard to believe it's over. We are already looking forward to our 10th next year.
Health wise things have been quiet which is good. Next week I have a CT scan on Tuesday and chemo on Wednesday. Let's keep those positive vibes going.
Until I know more next week..... Keep on Dancin'
We couldn't have asked for a better day. Weather was beautiful and course was in good condition. We had a record 125 participants this year and raised over $10,000,
I'd like to thank all our family and friends for coming out and being a part of the day. We couldn't do it without all your support.
Special thanks to my volunteers who kept things moving - Carol Lucht, Wendy Shahrikian, Roxanne Klingenmeyer, Cheryl Balncas, Mary Ann Zurawski, Kathy Huro, Courtney Huro, Megan Huro, Kevin Michelini, Jamie Hezja, Cindy Michelini, Jamie Michelini and Karen McAra.
Hard to believe it's over. We are already looking forward to our 10th next year.
Health wise things have been quiet which is good. Next week I have a CT scan on Tuesday and chemo on Wednesday. Let's keep those positive vibes going.
Until I know more next week..... Keep on Dancin'
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