Next week is going to be a flurry of motion and I wanted to take a moment to wish each and everyone of you a HAPPY THANKSGIVING!
This is the time of the year that we all reflect on the past year and think of all the things we are grateful for in our lives. Although if I had a choice of going through this journey I wouldn't take it, it still has instilled in me how fortunate I am to have so many friends and family who care about me. It has taught me to "stop and smell the roses" instead of rushing through my days to get to the next one. I have learned I am NOT invincible and need to take better care of myself. I now know that waiting until a tomorrow that may never come is not always a good idea. I have learned to dance and be a participant in my life instead of a bystander.
So as you sit at the dinner table on Thursday and bow your head in thanks, remember that every day should be a day of Thanksgiving and not celebrated only once a year.
Thank you once again for your love, friendship and words of encouragement and especially for reading my scribbles which has become my therapy.
Keep On Dancin'
Friday, November 16, 2012
Friday, November 9, 2012
Friday, November 9, 2012
I often have people approach me and say “My mother/father/sister/brother/friend, etc. was just diagnosed with cancer and I don’t know what to say. What should I do?” Seems like a simple question but with the experience I have with both with my mother and myself I have witnessed things I thought I would never see.
Most importantly be supportive both in words and actions. Let the person know you’re there for them. The hardest time is when you first get the news. Until it sinks in and you get all the information your imagination is running wild. You’re scared and mad at the same time. It’s comforting to know there are those around you who are there for you but it should be on your (the diagnosed) terms. What I mean (and everyone if different) is that some people just want time alone to reflect and gather the strength they are going to need to get through this ordeal. A simple message of I’m here if you need me in the first few weeks is better then a full on attack of being there 24/7. Ask if there is anything they need (i.e. ride to the doctor for support) but back down and don’t feel hurt if they say no. Remember the day before they got the news they were fully functional so wanting to take over tasks such as shopping, cleaning house, cooking, etc. should be put on the back burner until or if it’s needed.
Another no-no is to give unsolicited advice and comments. At this time they don’t want to know or care about your friend Julie’s aunt’s best friend’s cousin who was diagnosed and what they went through. Don’t be overly positive since know one at this time knows what is going on and until you do telling someone they are strong and will beat this with no problem are just words.
Once a plan of action is decided whether it be surgery, chemotherapy, radiation or a combination slowly ease back into their lives asking if there is anything you can do to make things easier for them. If you’re close enough to them you should be able to read them to know if you’re going in the right direction and when to back off. Some people, like myself, may not want to lose their drive to move forward and may not want any help at all. This is their way of coping by living their lives as normal as possible. Others may need a large support group to help them cope. Just remember that just because someone may not need help doesn’t mean they want to be cut off completely. Just make things as normal as possible and dwell on the positive and not the negatives.
Occasional phone calls (remember we have caller ID and if we don’t want to talk we won’t pick up) and greeting cards are always welcome. I still have every single card and note that has been sent to me from my first diagnosis ten years ago as well as those sent in the past two and a half years. When I feel down I look through my cards and they remind me of all the wonderful friends I have out there.
Listen when they want to talk. Stay positive in your comments. They are putting a lot of trust into their team of Doctors and Nurses and the last thing they want to hear is unsolicited negative opinions on why you might think the course of treatments they are on isn’t right because your friend Julie’s aunt’s best friend’s cousin’s Doctors did something different. A large part of getting well is mental attitude and the belief that the Doctor has the experience and knowledge to get you through this. If they simply do not want to talk about it, don’t. Sometimes you just want to forget about what’s going on and have a conversation about anything but your situation. Remember we live with this 24/7 and a little diversion is a good thing.
Lastly – cancer is NOT contagious. It will not bring you bad luck if you associate with someone who has it. I saw my mother as well as myself lose life long friends who couldn’t deal with it. Well how do you think we feel??? We don’t want to deal with it either but we don’t have a choice. I actually had a good friend who said he couldn’t bear hearing or reading about what was going on and still to this day calls another friend for updates. He simply just disappeared from my life. He has lost two and a half years so far that can never be gotten back.
Bottom line – you should know the person and have a pretty good feel for their needs. Using common sense is your best tool. I hope this insight helps in some small way.
Keep On Dancin’
Most importantly be supportive both in words and actions. Let the person know you’re there for them. The hardest time is when you first get the news. Until it sinks in and you get all the information your imagination is running wild. You’re scared and mad at the same time. It’s comforting to know there are those around you who are there for you but it should be on your (the diagnosed) terms. What I mean (and everyone if different) is that some people just want time alone to reflect and gather the strength they are going to need to get through this ordeal. A simple message of I’m here if you need me in the first few weeks is better then a full on attack of being there 24/7. Ask if there is anything they need (i.e. ride to the doctor for support) but back down and don’t feel hurt if they say no. Remember the day before they got the news they were fully functional so wanting to take over tasks such as shopping, cleaning house, cooking, etc. should be put on the back burner until or if it’s needed.
Another no-no is to give unsolicited advice and comments. At this time they don’t want to know or care about your friend Julie’s aunt’s best friend’s cousin who was diagnosed and what they went through. Don’t be overly positive since know one at this time knows what is going on and until you do telling someone they are strong and will beat this with no problem are just words.
Once a plan of action is decided whether it be surgery, chemotherapy, radiation or a combination slowly ease back into their lives asking if there is anything you can do to make things easier for them. If you’re close enough to them you should be able to read them to know if you’re going in the right direction and when to back off. Some people, like myself, may not want to lose their drive to move forward and may not want any help at all. This is their way of coping by living their lives as normal as possible. Others may need a large support group to help them cope. Just remember that just because someone may not need help doesn’t mean they want to be cut off completely. Just make things as normal as possible and dwell on the positive and not the negatives.
Occasional phone calls (remember we have caller ID and if we don’t want to talk we won’t pick up) and greeting cards are always welcome. I still have every single card and note that has been sent to me from my first diagnosis ten years ago as well as those sent in the past two and a half years. When I feel down I look through my cards and they remind me of all the wonderful friends I have out there.
Listen when they want to talk. Stay positive in your comments. They are putting a lot of trust into their team of Doctors and Nurses and the last thing they want to hear is unsolicited negative opinions on why you might think the course of treatments they are on isn’t right because your friend Julie’s aunt’s best friend’s cousin’s Doctors did something different. A large part of getting well is mental attitude and the belief that the Doctor has the experience and knowledge to get you through this. If they simply do not want to talk about it, don’t. Sometimes you just want to forget about what’s going on and have a conversation about anything but your situation. Remember we live with this 24/7 and a little diversion is a good thing.
Lastly – cancer is NOT contagious. It will not bring you bad luck if you associate with someone who has it. I saw my mother as well as myself lose life long friends who couldn’t deal with it. Well how do you think we feel??? We don’t want to deal with it either but we don’t have a choice. I actually had a good friend who said he couldn’t bear hearing or reading about what was going on and still to this day calls another friend for updates. He simply just disappeared from my life. He has lost two and a half years so far that can never be gotten back.
Bottom line – you should know the person and have a pretty good feel for their needs. Using common sense is your best tool. I hope this insight helps in some small way.
Keep On Dancin’
Friday, November 2, 2012
Friday, November 2, 2012
Although I knew I was cleared for chemo on Wednesday I still sat on the edge of the seat until they actually stuck the needle in and started the infusion. It’s been such a crazy six weeks that I was ready for another road block to be put in front of me. Fortunately everything went as planned and I received the chemo.
I did get a call today from the liver specialist letting me know that the test came back confirming I have Gilbert’s Syndrome. His words - “so what”! He said everything else looks good and besides the cancer, my liver looks good.
Also received a call from my doctors nurse letting me know about the results. I asked what does this mean for the study. They have to go back to the head of the trial and submit my results and supposedly get new range for my bili count. She said she would let me know as soon as she heard something. I’m not going to let my guard down until I know everything is set. So I’ll continue with my bland and tasteless diet. Like I told my doctor yesterday – if it doesn’t look appealing and tastes like crap it must be good for you!
I’m still trying to decide whether I should have gallbladder surgery. Dr F said it’s up to me and shouldn’t affect my chemo schedule since I have 3 weeks in between. I just don’t feel comfortable with them poking around near my liver (gallbladder is directly under your liver). I guess I have to think about this for a while before I make up my mind.
Otherwise things are fine. I feel a lot more tired and achy after this treatment. I’m sure my body was getting use to being chemo free and then was hit with a double whammy this week (I also had my bone treatment).
Thanks to all of you for your support and words of encouragement while I was going through this fiasco.
Keep On Dancin’
I did get a call today from the liver specialist letting me know that the test came back confirming I have Gilbert’s Syndrome. His words - “so what”! He said everything else looks good and besides the cancer, my liver looks good.
Also received a call from my doctors nurse letting me know about the results. I asked what does this mean for the study. They have to go back to the head of the trial and submit my results and supposedly get new range for my bili count. She said she would let me know as soon as she heard something. I’m not going to let my guard down until I know everything is set. So I’ll continue with my bland and tasteless diet. Like I told my doctor yesterday – if it doesn’t look appealing and tastes like crap it must be good for you!
I’m still trying to decide whether I should have gallbladder surgery. Dr F said it’s up to me and shouldn’t affect my chemo schedule since I have 3 weeks in between. I just don’t feel comfortable with them poking around near my liver (gallbladder is directly under your liver). I guess I have to think about this for a while before I make up my mind.
Otherwise things are fine. I feel a lot more tired and achy after this treatment. I’m sure my body was getting use to being chemo free and then was hit with a double whammy this week (I also had my bone treatment).
Thanks to all of you for your support and words of encouragement while I was going through this fiasco.
Keep On Dancin’
Tuesday, October 30, 2012
Tuesday, October 30, 2012
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’
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’
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’
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