Your caroling was wonderful and just wanted to say thank you for such a special greeting to our home.You all bring much enjoyed warmth and holiday spirits to Deb's most favorite time of the year.
KTS and Happy Holidays,
Rod and Deb
Sunday, December 14, 2008
Holiday Spirits
Your caroling was wonderful and just wanted to say thank you for such a special greeting to our home.You all bring much enjoyed warmth and holiday spirits to Deb's most favorite time of the year.
KTS and Happy Holidays,
Rod and Deb
Friday, December 12, 2008
Wednesday, December 10, 2008
Northside ER Round #2 (Updated 12/11 w/Good News)
12.10.08
Just getting home tonight from all day event at Northside ER starting early this morning. Was able to tag out with Connie and Bonnie who insisted on staying the night at hospital with Deb. Thank you!
The Good News
The paracentesis went I planned and they drained approximately 2.5 litres of excess fluid (ascites) from Deb’s abdomen by 1030am. I could tell right away when she returned to the recovery room that her abdominal area swelling was reduced. Deb was expressing extreme interest in food and was craving a cheeseburger that I was glad to see that she devoured it. That was the most food she consumed at one time in the last two days.
Unfortunately, there is some new bad news to tell. All Deb’s levels from the lab tests came back good including her ammonia level which is what Dr. Yaffe was thinking the cause for Deb’s increased confusion. The ER doctor then proceeded to do a brain ctscan and found new growth on Deb’s brain that was not on the last brain ctscan. They are speculating this is a new tumor and responsible for Deb’s current confusion levels increasing. Won’t know for sure until results from the MRI that Deb also had done this evening. Well this was a curve ball that we were not expecting this morning during what was hopefully going to be a routine fluid drain. Will know more tomorrow after we talk with doctors about MRI results in the morning.
Deb is resting well tonight with tolerable abdomen pain, less discomfort, and at ease now with fresh faces around her. Her confusion level is leveling out and hope it will continue to improve tomorrow.
KTS Deb and Susan!
Sweet dreams my princess and love to all.
After getting a full night's rest thanks to Dr. Ambien and Bonnie/Connie staying with Deb, was able to talk to Dr. Yaffe who met us at Northside this morning. They reviewed Deb's MRI and did not classify as a tumor and instead of a possible hematoma about the size of a small pea. This is very good news to us all and keeps Deb's journey just a little less complicated. There is still no definitive root cause as to source of Deb's confusion at this point and Dr. Yaffe feels it is most likely combination of her pain meds, low blood count, and possible she experienced trauma to the brain when she fell out her bed last week in the hospital.
Either way, Deb's cognitive reasoning already appears better this morning than yesterday. Her hemoglobin was down to approximately 8.0 so Dr. Yaffe has put in order for two pints of blood this morning and indicated that we can go home today when the transfusion is completed.
Thank you again to my angels Connie and Bonnie for sacrificing from of your precious sleep and staying with Deb in her room last night in those most uncomfortable pullout single chair beds.
KTS
Rod
Feel my heart with gladness…take away my sadness.
Ease my troubles that’s what you do.
Van Morrison
Just getting home tonight from all day event at Northside ER starting early this morning. Was able to tag out with Connie and Bonnie who insisted on staying the night at hospital with Deb. Thank you!
The Good News
The paracentesis went I planned and they drained approximately 2.5 litres of excess fluid (ascites) from Deb’s abdomen by 1030am. I could tell right away when she returned to the recovery room that her abdominal area swelling was reduced. Deb was expressing extreme interest in food and was craving a cheeseburger that I was glad to see that she devoured it. That was the most food she consumed at one time in the last two days.
Unfortunately, there is some new bad news to tell. All Deb’s levels from the lab tests came back good including her ammonia level which is what Dr. Yaffe was thinking the cause for Deb’s increased confusion. The ER doctor then proceeded to do a brain ctscan and found new growth on Deb’s brain that was not on the last brain ctscan. They are speculating this is a new tumor and responsible for Deb’s current confusion levels increasing. Won’t know for sure until results from the MRI that Deb also had done this evening. Well this was a curve ball that we were not expecting this morning during what was hopefully going to be a routine fluid drain. Will know more tomorrow after we talk with doctors about MRI results in the morning.
Deb is resting well tonight with tolerable abdomen pain, less discomfort, and at ease now with fresh faces around her. Her confusion level is leveling out and hope it will continue to improve tomorrow.
KTS Deb and Susan!
Sweet dreams my princess and love to all.
After getting a full night's rest thanks to Dr. Ambien and Bonnie/Connie staying with Deb, was able to talk to Dr. Yaffe who met us at Northside this morning. They reviewed Deb's MRI and did not classify as a tumor and instead of a possible hematoma about the size of a small pea. This is very good news to us all and keeps Deb's journey just a little less complicated. There is still no definitive root cause as to source of Deb's confusion at this point and Dr. Yaffe feels it is most likely combination of her pain meds, low blood count, and possible she experienced trauma to the brain when she fell out her bed last week in the hospital.
Either way, Deb's cognitive reasoning already appears better this morning than yesterday. Her hemoglobin was down to approximately 8.0 so Dr. Yaffe has put in order for two pints of blood this morning and indicated that we can go home today when the transfusion is completed.
Thank you again to my angels Connie and Bonnie for sacrificing from of your precious sleep and staying with Deb in her room last night in those most uncomfortable pullout single chair beds.
KTS
Rod
Feel my heart with gladness…take away my sadness.
Ease my troubles that’s what you do.
Van Morrison
Friday, December 5, 2008
Chemoembolization #2 Completed
Deb successfully completed the second of the two scheduled chemo embos at Northside yesterday around 3pm est. This treatment was for her left liver lobe only. It was moved up a day since they do not like to do the treatments on Fridays. There was initial concern proceeding with this treatment due to the following reasons. First, Deb’s pre-treatment lab tests indicated both her hematocrit (31.2 L) and hemoglobin (9.7 L) blood levels low. Second, Deb’s alertness level was below her baseline a was a little “foggy” including slight memory loss. Doctor Levy indicated these were some of symptoms common to what is called hepatic encephalopathy and typical for liver cancer patients. After further testing was completed including pneumonia test, Dr. Levy concluded that Deb’s liver was functioning well enough to proceed with the treatment around 1pm est.
There were no complications with the treatment and all went as planned. During the treatment, Dr. Levy indicated that he estimated approximately 90% of tumor in right liver lobe from first treatment to be dead due to lack of blood flow which is very positive as to how well the first treatment worked. He did say that he did confirm new growth in Deb’s left liver lobe since first treatment. There was only a small accident with Deb when first brought to her recovery room. She tried to get out of bed by herself soon after being moved to her recovery room. Unfortunately, she slipped and hit her cheek, lip, and small bruise on upper chest. Everyone on the floor was freaking as you can imagine a patient just getting out of surgery. Fortunately, Deb was fine and even had a pre-cautionary xray of chest to be sure.
From lessons learned after first treatment, we discussed performing a post recovery lab test to check Deb’s blood levels. As a result, the test taken first thing this morning confirmed Deb’s blood level continued to drop more (HGB 7.5L, HCT 25.5L) before the treatment and blood transfusion required (2 units). At 7pm est tonight, the second unit of blood has just been completed and means we get to go home soon. Just need to do one more lab test to be sure all levels are back to normal. 9pm blood results are much better (HGB 10.6, HCT 33.9) and our ticket outta here!
It has been a long two days at Northside but Deb really did great and everyone on staff were wonderful as usual. Deb is very tired and rightfully so. As always, I am so proud of well she made it thru this treatment and now she is ready to go home to do some much deserved nesting.
Thank you again to the wonderful Keheley school family for the Thanksgiving dinner and as always the neighborhood dinners during the holidays. Your love and generosity is so heartfelt to our family and especially Deb.
More love, prayers, and good vibes coming to Deb’s sister Susan in prep for her Pancreatectomy next Monday @ Mayo. More about Susan’s journey.
KTS and love to all!
God only knows what I would be without you
Beach Boys
There were no complications with the treatment and all went as planned. During the treatment, Dr. Levy indicated that he estimated approximately 90% of tumor in right liver lobe from first treatment to be dead due to lack of blood flow which is very positive as to how well the first treatment worked. He did say that he did confirm new growth in Deb’s left liver lobe since first treatment. There was only a small accident with Deb when first brought to her recovery room. She tried to get out of bed by herself soon after being moved to her recovery room. Unfortunately, she slipped and hit her cheek, lip, and small bruise on upper chest. Everyone on the floor was freaking as you can imagine a patient just getting out of surgery. Fortunately, Deb was fine and even had a pre-cautionary xray of chest to be sure.
From lessons learned after first treatment, we discussed performing a post recovery lab test to check Deb’s blood levels. As a result, the test taken first thing this morning confirmed Deb’s blood level continued to drop more (HGB 7.5L, HCT 25.5L) before the treatment and blood transfusion required (2 units). At 7pm est tonight, the second unit of blood has just been completed and means we get to go home soon. Just need to do one more lab test to be sure all levels are back to normal. 9pm blood results are much better (HGB 10.6, HCT 33.9) and our ticket outta here!
It has been a long two days at Northside but Deb really did great and everyone on staff were wonderful as usual. Deb is very tired and rightfully so. As always, I am so proud of well she made it thru this treatment and now she is ready to go home to do some much deserved nesting.
Thank you again to the wonderful Keheley school family for the Thanksgiving dinner and as always the neighborhood dinners during the holidays. Your love and generosity is so heartfelt to our family and especially Deb.
More love, prayers, and good vibes coming to Deb’s sister Susan in prep for her Pancreatectomy next Monday @ Mayo. More about Susan’s journey.KTS and love to all!
God only knows what I would be without you
Beach Boys
Tuesday, November 18, 2008
Happy 19th Anniversary!
November 19th, 1989, Waimea Falls, OahuYour beauty and our love is as strong as the day we met. I will never forget that magical day on the North Shore. You bring me true joy.
This playlist of songs below have been selected especially for you and express in so many wonderful ways my love for you. They also represent just some of the many incredible memories of our last 19 years together.
Our companionship and journey together is beautiful!
I love you dearly and always,
Rod
Tuesday, November 11, 2008
Chemo Embo Treatment Round Two Scheduled for 12.05.08
It has been over 5 weeks since Deb’s first (1 of 2) chemoembolization treatments and she has now recovered enough with her strength and weight to plan second chemo embo of left liver lobe at Northside. We are targeting the second treatment right after Thanksgiving. This will give Deb a little more time to gain additional weight and strength. To help with weight gain, Deb has been taking Megestrol for the last week which is used to help cancer patients gain weight. Thanks for the head’s up on this medicine Barb R. ! Medicine works great and love sending brownies up to Deb for her after dinner cravings.
We met with Dr. Yaffe today and he agreed with our treatment plan. Dr. Yaffe also indicated Deb’s last liver biopsy at end of October appears to confirm lesions found on Deb’s left liver lobe were low grade consistent to right liver lobe.
As far as the Parathyroid Gland surgery, Dr. Yaffe agreed that it makes sense to wait till completion of the second chemo embo treatment/post recovery. We will have ongoing lab tests during this time to monitor her calcium level to be sure it is not spiking. In addition, Deb will take a weekly fasomax tablet that will help keep her calcium level low as well as maintain bone strength.
Overall, Deb is currently maintaining very well with full awareness. Energy level continues to improve every day. Mostly on weekends, she has been getting great exercise rebuilding strength in her legs for short spurts during our walks around the lake. Enjoyed our wonderful weekend with you Connie, Susan, and Ellen!
Thank you again to all for the absolute wonderful dinners that have kept Deb and us going strong. Sleep well my princess.
Happy Thanksgiving, KTS and love to all,
Rod
A love like ours could never die….
Beatles
We met with Dr. Yaffe today and he agreed with our treatment plan. Dr. Yaffe also indicated Deb’s last liver biopsy at end of October appears to confirm lesions found on Deb’s left liver lobe were low grade consistent to right liver lobe.
As far as the Parathyroid Gland surgery, Dr. Yaffe agreed that it makes sense to wait till completion of the second chemo embo treatment/post recovery. We will have ongoing lab tests during this time to monitor her calcium level to be sure it is not spiking. In addition, Deb will take a weekly fasomax tablet that will help keep her calcium level low as well as maintain bone strength.
Overall, Deb is currently maintaining very well with full awareness. Energy level continues to improve every day. Mostly on weekends, she has been getting great exercise rebuilding strength in her legs for short spurts during our walks around the lake. Enjoyed our wonderful weekend with you Connie, Susan, and Ellen!
Thank you again to all for the absolute wonderful dinners that have kept Deb and us going strong. Sleep well my princess.
Happy Thanksgiving, KTS and love to all,
Rod
A love like ours could never die….
Beatles
Sunday, October 19, 2008
Family Thank You
It is time again to send a special thank you to all of you for the endless support to Deb and our family.
KTS and love to all!
Rod, Deb, Taylor and Tommy
KTS and love to all!
Rod, Deb, Taylor and Tommy
To play, click on the image to the left or click this link below
http://www.youtube.com/watch?v=_GMXmJfwA7o
Could not have said it any better. Love you and thank you Tommy!
Wednesday, October 8, 2008
3 Pints Too Low
Took Deb in to get her lab tests on Tuesday as a result of reporting to Dr. Yaffe that she has been very tired, pale, incoherent, and increase in confusion for last several days after chemoembolization treatment a week ago. I came home early from work today because her voice sounded very shaky on the phone.
As I began reviewing the results of her tests online Tuesday night, I noticed calcium level was normal at 9.3 which blew my theory as to thinking her calcium level was high and was related to the symptons she has been experiencing. At the same time, I received a call from nurse indicating her Hematocrit was low (22.4, Standard Range=37.0-47.0%) and so was Hemoglobin (HGB) at 7.3 (Standard range=12.0-16.0 g/dl). She also said that Dr. Yaffe will be calling first thing in the morning with instructions on taking her in for blood transfusion. It is such a welcome relief when there is a break thru understanding of root cause of Deb’s symptons and explains everything. I just hate that Deb went almost an entire week before diagnosed.
We have been at Northside hospital since noon today and first pint was not ready until 530pm. Had to keep poor Deb awake in the Infusion center the whole time and know it was miserable since she has not been awake for 5 hours during the day for quite some time. Before then, they wanted to send us home on one pint and come back tomorrow for remaining 2 pints. I am learning from friends fast. I just told them was not an option to come back in her current state tomorrow and that I was just going to check Deb in the ER downstairs to get the other 2 pints as soon as they finish the first pint. That approach was successful and Infusion center supervisor even felt so bad that she helped me expedite admitting Deb. Thank you Lynn!
When they finally got the first pint going, the supervisor personally escorted Deb into her private room so she could lie down and rest during the remaining transfusion which made all the difference.
At 10pm, just finished the second pint (A Positive) now (1.5-2hrs per pint) and sitting here watching the last remaining pint go effortlessly into Deb’s body. Deb is resting well and color looks much better. Last pint should be done by midnight so we can go home and Deb can return to her much loved nest.
I am hoping she will be a new woman tomorrow morning as result of this transfusion tonight and return her back to her normal quality of life.
KTS and love to all,
Rod
Our love just keeps on growing...
James Taylor
As I began reviewing the results of her tests online Tuesday night, I noticed calcium level was normal at 9.3 which blew my theory as to thinking her calcium level was high and was related to the symptons she has been experiencing. At the same time, I received a call from nurse indicating her Hematocrit was low (22.4, Standard Range=37.0-47.0%) and so was Hemoglobin (HGB) at 7.3 (Standard range=12.0-16.0 g/dl). She also said that Dr. Yaffe will be calling first thing in the morning with instructions on taking her in for blood transfusion. It is such a welcome relief when there is a break thru understanding of root cause of Deb’s symptons and explains everything. I just hate that Deb went almost an entire week before diagnosed.
We have been at Northside hospital since noon today and first pint was not ready until 530pm. Had to keep poor Deb awake in the Infusion center the whole time and know it was miserable since she has not been awake for 5 hours during the day for quite some time. Before then, they wanted to send us home on one pint and come back tomorrow for remaining 2 pints. I am learning from friends fast. I just told them was not an option to come back in her current state tomorrow and that I was just going to check Deb in the ER downstairs to get the other 2 pints as soon as they finish the first pint. That approach was successful and Infusion center supervisor even felt so bad that she helped me expedite admitting Deb. Thank you Lynn!
When they finally got the first pint going, the supervisor personally escorted Deb into her private room so she could lie down and rest during the remaining transfusion which made all the difference.
At 10pm, just finished the second pint (A Positive) now (1.5-2hrs per pint) and sitting here watching the last remaining pint go effortlessly into Deb’s body. Deb is resting well and color looks much better. Last pint should be done by midnight so we can go home and Deb can return to her much loved nest.
I am hoping she will be a new woman tomorrow morning as result of this transfusion tonight and return her back to her normal quality of life.
KTS and love to all,
Rod
Our love just keeps on growing...
James Taylor
Tuesday, October 7, 2008
KTS Mom :)
Mom,
We are all thinking about you today and sending much needed strength especially to you. Special prayers for you to have a successful and pain free back surgery.
Keep the strength and love from all of your family.
We are all thinking about you today and sending much needed strength especially to you. Special prayers for you to have a successful and pain free back surgery.
Keep the strength and love from all of your family.
Wednesday, October 1, 2008
Chemo Embo Treatment #1 Completed
Deb’s chemoembolization was completed successfully with no complications by Dr. Levy @ Northside Tuesday around 1230pm. Deb was very strong during and after the treatment with most noticeable post side effect was additional pain. We were warned ahead of time about the pain since the treatment reduces blood flow to the liver tumor via synthetic particle beads inserted into the arteries leading to the liver. Worked with the doctor and RN specialist this time before the treatment to try lower grade pain medicine Oxycodone and morphine as needed if pain is unbearable. The results in recovery room were much better in that Deb did not experience all the extra side effects of taking just morphine. As a result, she was discharged early afternoon today.
Thank you Connie for spending weekend with us, getting Deb ready for the treatment, and teaching me about the pain medicine spectrum which made all the difference working with the doctors.
Overall, Deb really did well with this treatment and I am so proud of how strong she continues to be thru this journey. It is never
comforting to have a poison in your body but it has been very comforting today to know that the chemo poison is at work attacking the liver tumor as we speak. Deb is resting well tonight and pain level has been controllable with Oxycodone pain med with 3 hour morphine med as a standby if necessary for immediate relief. We have been able to stay ahead of most side effects with all of her medicines and keep her awareness level high.
For a second time, Northside doctors/staff have taken great care of Deb during her first treatment/recovery and just want to say a heartfelt thank you to all!
Special thank you to Barb for staying with Deb and I know she will enjoy spending time with her good friend.
Sleep peacefully and pain free tonight in your nest Deb. I love you...
KTS and love to all,
Rod
Thank you Tori and we love your beautiful picture :)
Stay strong Mom. Know that we love you and are sending strength to you for your planned surgery.
Baby you're everything I've ever dreamed of….
Chicago
Thank you Connie for spending weekend with us, getting Deb ready for the treatment, and teaching me about the pain medicine spectrum which made all the difference working with the doctors.
Overall, Deb really did well with this treatment and I am so proud of how strong she continues to be thru this journey. It is never
comforting to have a poison in your body but it has been very comforting today to know that the chemo poison is at work attacking the liver tumor as we speak. Deb is resting well tonight and pain level has been controllable with Oxycodone pain med with 3 hour morphine med as a standby if necessary for immediate relief. We have been able to stay ahead of most side effects with all of her medicines and keep her awareness level high.For a second time, Northside doctors/staff have taken great care of Deb during her first treatment/recovery and just want to say a heartfelt thank you to all!
Special thank you to Barb for staying with Deb and I know she will enjoy spending time with her good friend.
Sleep peacefully and pain free tonight in your nest Deb. I love you...
KTS and love to all,
Rod
Thank you Tori and we love your beautiful picture :)
Stay strong Mom. Know that we love you and are sending strength to you for your planned surgery.
Baby you're everything I've ever dreamed of….
Chicago
Saturday, September 20, 2008
Chemo Embo @ NorthSide Scheduled
Had a wonderful and productive consultation Friday with Interventional Radiologist, Dr. Frank Levy and RN Specialist Mackenzie King to review details for Chemoembolization treatment. After reviewing Deb’s medical records and also discussing with Dr. Yaffe, Dr. Levy has confirmed that Deb is a candidate to receive the chemo embo treatment. In order to qualify, you have to have at least 50% healthy liver tissue.Procedure (2 Treatments)
Dr. Levy has recommended two chemo embo treatments for Deb and will be accomplished 1 month apart from each other. The purpose for this is that you do not want to hit both lobes of the liver with chemo medicine risking liver failure so they do one lobe at a time. The first treatment is scheduled for September 30th @ 10am. If treatment goes well, Deb will only be required 1 overnight stay in hospital and will be checking in at 730am for pre-treatment preparation. Deb will be given medications to prevent stomach upset and pain. In addition, she will also be given Octreotide which is same medicine she is getting biweekly. Dr. Levy will start the treatment by inserting needle near groin area and first insert Ethiodol dye into liver via the hepatic artery. Next, he will inject the chemo medicine (not yet sure of type) via artery into only the right lobe of Deb’s liver. During this time, Deb’s liver will get normal blood flow to the liver via the veins (80% blood flow) while chemo medicine is administered via the artery (%20 blood flow). After completion of first treatment, the second treatment for Deb will be tentatively scheduled in approximately 1 month to treat her left kidney lobe.
Risks
We were told with this type of treatment that there are obvious risks to Deb including infection due to the needle insertion, allergic to the dye, rejection of chemo medicine used, and the most severe being total liver failure. With this said, Dr. Levy feels quite confident that Deb is healthy and strong enough for the treatment. Even with our heart's beating rapidly and could see the concern in Deb's face that I know was the same as mine, we both agreed that it was time to move forward with this treatment.
We were told with this type of treatment that there are obvious risks to Deb including infection due to the needle insertion, allergic to the dye, rejection of chemo medicine used, and the most severe being total liver failure. With this said, Dr. Levy feels quite confident that Deb is healthy and strong enough for the treatment. Even with our heart's beating rapidly and could see the concern in Deb's face that I know was the same as mine, we both agreed that it was time to move forward with this treatment.
Post Treatment
The post-embo symptons that Deb can expect will consist primarily of pain, nausea, and fever with pain being the most common side effect because there is no longer a blood supply to the tumor. During her hospital recovery stay, Deb will have a patient controlled pain pump to manage her pain level. We were told to expect fever normally for up to a week after the treatment. Fatigue and loss of appetite are also common for two weeks. Deb should be able to resume normal activities within a week of treatment.
The post-embo symptons that Deb can expect will consist primarily of pain, nausea, and fever with pain being the most common side effect because there is no longer a blood supply to the tumor. During her hospital recovery stay, Deb will have a patient controlled pain pump to manage her pain level. We were told to expect fever normally for up to a week after the treatment. Fatigue and loss of appetite are also common for two weeks. Deb should be able to resume normal activities within a week of treatment.
Monitoring Progress
Upon completion of both treatments, Deb will receive follow up CT scan to determine how much the tumors ultimately shrank.
I can see much relief in Deb (and me too) that we are moving forward with this treatment as any liver tumor shrinkage should improve Deb's quality of life and buy us more time till we get to what I call the "John Coffey" treatment. She is still doing good with warm spirits at the house but continues to get fatigued quite easily.
All for now and we are heading out on this beautiful, breezy 76 degree pre-fall day to spend some quality time with good friends for the Tennessee-Florida and Auburn-LSU SEC football games. Go Gators!
Love to all and KTS,
Rod and Deb
After all this time, you're still the one I love
Shania Twain
Friday, September 19, 2008
Happy Birthday Tommy
Never stop exploring your passions in this wonderful world we live.
Good luck on your movie contest and we are so proud of you!
All our love to you,
Mom, Dad, Taylor, Casey, and Teddy
Good luck on your movie contest and we are so proud of you!
All our love to you,
Mom, Dad, Taylor, Casey, and Teddy
Sunday, September 14, 2008
Follow Up Call Tonight on Treatment Plan from Oncologist, Dr. Yaffe
Received a welcoming surprise call Sunday night from Dr. Yaffe and he wanted to pass along quick update on status of some of the research results for Deb’s treatment planning options.1) Parathyroid Gland Surgery
Confirmed that only 1 of the 4 glands tested positive so Deb will be going forward with the surgery to remove most likely 3 of 4 parathyroid glands.
Next Steps
The original surgery was not scheduled until November and I will start the phone calls tomorrow to expedite ASAP. We are hoping this surgery will help address the lack of energy and tiredness that Deb is currently experiencing.
2) Bland versus Chemo Embolization
Dr. Yaffe is more in favor of chemoembolization versus bland embolization since it is used more for Pancreatic cancer. Was not in big favor of the hepatic artery pump due to not trouble free and ongoing maintenance.
Next Steps
As a result, Dr. Yaffe is currently in process of submitting the referral to Northside Hospital for Deb to receive the chemo embolization. We will not know yet how many treatments will be required until we discuss with the Radiologist at Northside when scheduled who may elect to break down into smaller multiple treatments if necessary.
Upon completion of the chemo embolization treatment(s), Deb’s chromogranin level will be tested to measure her progress. Dr. Yaffe is still waiting current chromogranin level test results to compare to results from Dr. Ahlgren visit in DC.
If chomogranin levels are still elevated, the following alternate treatment options will taken under consideration after further research of risks and side effects:
a) Interferon
Oral base chemo therapy treatment options for neuroendocrine tumor cancer
a) Temodar - 7 days on, 7 days off. Very expensive and will require approval from insurance
b) Thalidomide - Dose is daily. Requires special registration from the manufacturer who performs remote monitoring via phone. This is the medicine used in the 1960s with pregnant women which produced the very controversial “flipper babies”. As a result, this drug was put back on the shelf for over 30 years and is now used with certain cancer patients.
3) Echocardiogram
Although all of Deb’s tests have come back negative on heart and lungs, Dr. Yaffe would like to recommend a echocardiogram for Deb.
Next Steps
Instructed to contact referrals department to begin moving forward with the test.
4) Neuroendocrine / Men1 Genetic Screening
Dr. Yaffe has confirmed the genetic testing that Susan found information on (thanks Susan!). If tested and is abnormal for Deb, it would confirm her current condition and that it is inherited from her Dad.
Next Steps
Dr. Yaffe is in process of referral to NorthSide Hospital to receive the genetic test. In addition, we will also setup the tests for both Taylor and Tommy.
Deb had another good weekend of peaceful rest at the house doing what she has always loved in
life and that is reading her books in her favorite nesting areas upstairs and early mornings on the porch before the heat kicks in. I am guilty that I did not get her out more for more exercise since this is what she needs. We will get out our walking shoes this week and hit the hood this week to continue to build her strength. Sleep well beautiful.Love to all and KTS!
Rod
Prayers and strength to everyone in Galveston as a result of Ike's deadly devastation.
How could so much love be inside of you. You are the sunshine of my life
Stevie Wonder
Thursday, September 11, 2008
Yaffe rhymes with Coffey
It was good day. Deb was able to finalize switch over to Oncologist, Dr. Yaffe in our follow up appointment today at Cumberland.
Quick Summary
Sandostatin daily treatments were stopped today at Dr. Yaffe’s recommendations based on how well Deb has adapted to the medicine. Yeah! We and especially Deb were so relieved to hear this news. Her monthly LAR injections will be 30mg and switched to every two weeks. This was based on recommendation from Dr. Ahlgren @ George Washington in DC.
Results from recent parathyroid ultrasound and nuclear medicine tests confirmed previous diagnosed thyroid nodule in neck. Will get follow up information from Dr. Lucarini for next step preparation for surgery.
Discussed chemo/bland embolization and hepatic pump treatment options documented in Dr. Ahlgren’s letter. He indicated that the hepatic pump is being used at Piedmont and is good to know that it could be administered locally if we go down that path. It was encouraging that Dr. Yaffe was cautiously open to pursuing these all as viable treatment options after he researches further and discusses with us more next week.
Discussed the microscopic surgery to remove pancreas tumor as recommended from Dr. Kim at Emory. Dr. Yaffe did not immediately understand the value of this surgery since Deb’s pancreas tumor size was much smaller and recommended that we focus on the liver first. More research in this area necessary.
Base on today’s appointment, we are delighted that Dr. Yaffe is on board with us in finalizing Deb’s winning strategy treatment options.
Deb continues to slowly build more strength daily now except for some fatigue in her legs and discomfort in her abdominal
area. She is in good spirits and we will continue our walks to help build her strength back. I love to watch her sleep! Today was uplifting to Deb and was wonderful to witness that doctor- patient bond that is so important to her.
Dr. Yaffe, you are wonderful man and is so true what everyone says about you. You bring us a step closer in search for that “John Coffey” treatment.
Shalom and KTS!
Rod and Deb
We love your pictures beautiful Paige :)
All of Deb's little friends: Please keep your masterpiece pictures coming in.
Something special about you and me. Something special about our love..
Randy Newman
Quick Summary
Sandostatin daily treatments were stopped today at Dr. Yaffe’s recommendations based on how well Deb has adapted to the medicine. Yeah! We and especially Deb were so relieved to hear this news. Her monthly LAR injections will be 30mg and switched to every two weeks. This was based on recommendation from Dr. Ahlgren @ George Washington in DC.
Results from recent parathyroid ultrasound and nuclear medicine tests confirmed previous diagnosed thyroid nodule in neck. Will get follow up information from Dr. Lucarini for next step preparation for surgery.
Discussed chemo/bland embolization and hepatic pump treatment options documented in Dr. Ahlgren’s letter. He indicated that the hepatic pump is being used at Piedmont and is good to know that it could be administered locally if we go down that path. It was encouraging that Dr. Yaffe was cautiously open to pursuing these all as viable treatment options after he researches further and discusses with us more next week.
Discussed the microscopic surgery to remove pancreas tumor as recommended from Dr. Kim at Emory. Dr. Yaffe did not immediately understand the value of this surgery since Deb’s pancreas tumor size was much smaller and recommended that we focus on the liver first. More research in this area necessary.
Base on today’s appointment, we are delighted that Dr. Yaffe is on board with us in finalizing Deb’s winning strategy treatment options.
Deb continues to slowly build more strength daily now except for some fatigue in her legs and discomfort in her abdominal
area. She is in good spirits and we will continue our walks to help build her strength back. I love to watch her sleep! Today was uplifting to Deb and was wonderful to witness that doctor- patient bond that is so important to her.Dr. Yaffe, you are wonderful man and is so true what everyone says about you. You bring us a step closer in search for that “John Coffey” treatment.
Shalom and KTS!
Rod and Deb
We love your pictures beautiful Paige :)
All of Deb's little friends: Please keep your masterpiece pictures coming in.
Something special about you and me. Something special about our love..
Randy Newman
Tuesday, September 9, 2008
Emory University Consultation
Deb and I met with Dr. Kevin Kim at Emory University School of Medicine early Monday morning. He was able to go over medical records that I sent along with images that Lisa sent.
Dr. Kim appears to be quite tech savy and I was already impressed when I noticed dual 24" monitors in his office along with dual blackberries on his desk. Technology is king in the journey to conquering cancer!
Dr. Kim called me today to let me know that he completed review of Deb's diagnosis and treatment options with his staff. In summary, Dr. Kim indicated that if Deb were his patient, he would recommend the following:
1) Thyroid nodule - Neck
Because Deb was diagnosed with Primary HyperParathyroidism, Dr. Kim and staff agreed on removal of this nodule in her neck which could also possibly help stabilize Deb further. We have completed the parathyroid ultrasound test last week and nuclear medicine sestamibi test on Monday.
We are waiting test results from Head/Neck surgeon, Dr. Lucarini who if determines tests are positive, will want to move forward with surgery to remove 3 of 4 parathyroid glands. Tentatively already scheduled for November timeframe and will try to expedite with the idea that it can help mitigate some of Deb's current symptons.
3) Liver
Dr. Kim confirmed that Deb's liver tumor is not resectable due to the size and should experience shrinkage well using a chemoembolization treatment. We were also able to get his experience with Emory's SIR-Spheres microspheres which is similar to Chemoembolization. If/when we pursue this treatment, he recommended the chemoembolization and indicated that further research is required to determine if there is any more treatment benefit with SIR-Spheres microspheres.
Overall wonderful visit with Dr. Kim and he has offered his treatment services to us if we are able to pursue at Emory.
Dr. Kim appears to be quite tech savy and I was already impressed when I noticed dual 24" monitors in his office along with dual blackberries on his desk. Technology is king in the journey to conquering cancer!
Dr. Kim called me today to let me know that he completed review of Deb's diagnosis and treatment options with his staff. In summary, Dr. Kim indicated that if Deb were his patient, he would recommend the following:
1) Thyroid nodule - Neck
Because Deb was diagnosed with Primary HyperParathyroidism, Dr. Kim and staff agreed on removal of this nodule in her neck which could also possibly help stabilize Deb further. We have completed the parathyroid ultrasound test last week and nuclear medicine sestamibi test on Monday.
We are waiting test results from Head/Neck surgeon, Dr. Lucarini who if determines tests are positive, will want to move forward with surgery to remove 3 of 4 parathyroid glands. Tentatively already scheduled for November timeframe and will try to expedite with the idea that it can help mitigate some of Deb's current symptons.2) Pancreas / Kidney
From viewing Deb's ctscan images, Dr. Kim's team agreed that tumor in her pancreas most likely is small enough to be re-sected using microscopic surgery which means they go in thru a small incision and camera to remove the tumor. His opinion was that it was most likely a functioning tumor and causing high insulin levels in Deb's body. For surgical removal, he provided us list of local surgeons with this expertise at Emory if/when we go down that path. Because kidney contains small coritcal cyst, no further treatment recommendations for kidney were recommended at this time.
Medical Oncologists - Dr. John Kauh and Dr. David Lawson
Surgical Oncologists - Dr. David Kooly and Dr. Charles Staley
3) Liver
Dr. Kim confirmed that Deb's liver tumor is not resectable due to the size and should experience shrinkage well using a chemoembolization treatment. We were also able to get his experience with Emory's SIR-Spheres microspheres which is similar to Chemoembolization. If/when we pursue this treatment, he recommended the chemoembolization and indicated that further research is required to determine if there is any more treatment benefit with SIR-Spheres microspheres.
Overall wonderful visit with Dr. Kim and he has offered his treatment services to us if we are able to pursue at Emory.
Current Treatment(s)
1) First monthly Sandostatin injection received last Wednesday at Cumberland
2) Today marks end of 3rd of 4 week treatment of daily Sandostatin injections for Deb
3) Received call today from Cumberland that Dr. Brodeur has recommended change from monthly injection to every 2 weeks. Reason was not given and will find out tomorrow.
Next Steps
1) Follow up and Q/A Oncologist appointment tomorrow with Dr. Yaffe
2) Follow up call to MD Anderson, Chief Medical Director, Dr. Steve Sherman
3) Finalize/schedule date for Parathyroid Gland removal surgery with Dr. Lucarini
4) Research specialists, Dr. Phil Boudreaux and Dr. Lowell Anthony. Both these men have LONG Carcinoid histories and both are highly respected for their successful treatments. Thank you Carol-Anne for sharing these names with us and I owe you an email :)
Sincerest special thank you again to Dr. Kim. We really enjoyed meeting you and tremendously valued your expertise/treatment recommendations. And you too Lisa for emailing the specific images and help making this all happen!
Love to all and KTS!
Rod and Deb
You are the love, the great love of my life.
Carly Simon
1) Follow up and Q/A Oncologist appointment tomorrow with Dr. Yaffe
2) Follow up call to MD Anderson, Chief Medical Director, Dr. Steve Sherman
3) Finalize/schedule date for Parathyroid Gland removal surgery with Dr. Lucarini
4) Research specialists, Dr. Phil Boudreaux and Dr. Lowell Anthony. Both these men have LONG Carcinoid histories and both are highly respected for their successful treatments. Thank you Carol-Anne for sharing these names with us and I owe you an email :)
Sincerest special thank you again to Dr. Kim. We really enjoyed meeting you and tremendously valued your expertise/treatment recommendations. And you too Lisa for emailing the specific images and help making this all happen!
Love to all and KTS!
Rod and Deb
You are the love, the great love of my life.
Carly Simon
Sunday, September 7, 2008
Good bye and thank you Bonnie
Bonnie,I know you would not have it any other way then to be with your daughter during these trying times but we cannot begin to thank you enough for your wonderful care of Deb in the last month.
We absolutely could not have gotten to where we are currently today with Deb without you. As you can witness in Deb's beautiful smile, your heart of gold was just the perfect dose of medicine that no one else can offer than a daughter's mom. We have been a great care giving team and think all the love and family has made all the difference in providing the best care possible. You have prepared us with much needed strength for Deb's next step in her journey.
Special thank you to Brynda for driving over to help bring Bonnie back to her peaceful Florida home this weekend.Bonnie and Teddy, Buddies Forever :)
Have a safe trip home. We love you and KTS!
Rod, Taylor, Tommy, Casey, and Teddy
I love you and that's all I know.
Art Garfunkel
Rod, Taylor, Tommy, Casey, and Teddy
I love you and that's all I know.
Art Garfunkel
For Monday : Look forward to additional knowledge for breakfast in the morning with Dr. Kim appointment @ Emory.
Dave B. : Our hearts and prayers are with you for your cousin's medical condition in Texas. As hard as this is for anyone to go thru, it is heart breaking to see a child have to go thru this experience. Keep on running!
Monday, September 1, 2008
Hello Everyone
Hello everyone,
I know this message has been a long time coming. I want everyone to know that I am starting to feel better. I am no longer taking pain medication, adjusting to the medication I am taking, eating more, and am gaining back energy every day. This is because of all of you and your prayers, the loving care of my family, and having my dear mother with me every day taking care of me.
Also, my dear friends at Keheley, my dear friends in the neighborhood, my true blue friends that have been with our family forever, and of course my immediate and extended family. Most of all, my precious husband Rod. My Aunt Connie this weekend said that she had never seen a caregiver as incredible as him. I feel so loved, and treasured by my husband, without him, I truly could not do this.
Please keep the prayers coming and I will be in touch.
Love to all and KTS!
Debra
I know this message has been a long time coming. I want everyone to know that I am starting to feel better. I am no longer taking pain medication, adjusting to the medication I am taking, eating more, and am gaining back energy every day. This is because of all of you and your prayers, the loving care of my family, and having my dear mother with me every day taking care of me.
Also, my dear friends at Keheley, my dear friends in the neighborhood, my true blue friends that have been with our family forever, and of course my immediate and extended family. Most of all, my precious husband Rod. My Aunt Connie this weekend said that she had never seen a caregiver as incredible as him. I feel so loved, and treasured by my husband, without him, I truly could not do this.
Please keep the prayers coming and I will be in touch.
Love to all and KTS!
Debra
In search of John Coffey
We have had time to settle down and think about our treatment options after our visit to George Washington Medical Center. Last week, we had our follow up talk with Deb’s Oncologist, Dr. Brodeur about Dr. Alghren’s consultation letter. Our primary discussion was focused around when to move forward with the next treatment option which we think at this point is most likely chemoembolization. After going back and forth, Dr. Brodeur basically felt it was pre-mature to move forward with this treatment because 1) Deb’s current body strength level was not yet ready, 2) risk from side effects of the treatment, and 3) the treatment was only addressing the liver and not the rest of the body.
I was told by Dr. Brodeur to not think like a surgeon and that you have to look at the global perspective of what is going on in Deb’s body. He said it is common for people to want to feel like you are doing something by moving forward with some sort of treatment to eradicate the medical condition. His overall justification that the chemoembolization is not an option at this time is based on the fact that the treatment will only shrink approximately 30-60% of the liver tumor. At this point, you still have a significant tumor that you are left with in your body and now along with additional poison as a result of the chemo treatment.
At this point, Dr. Brodeur is recommending for Deb to maintain on her daily injections of the Sandostatin treatment and go to a monthly injection this Wednesday. He continued to state that he has patients that are on this medication for years and are also back to work.
Well, what I live by in life is TBV. Trust by verify. With full respect of Dr. Brodeur, we are still going to pursue 3rd and 4th opinions from both Emory and MD Anderson on treatment options. We need to understand more from other specialists that it is okay to take “a wait and see approach” or should be moving forward with a more aggressive treatment.
With all that said, I can tell you that Deb has done amazingly well on the Sandostatin treatment in the last week and a half. We have seen Deb go from daily pain medicine to no request for pain medicine for abdominal pains. Her alertness is nearly back to normal. The medicine is quite fascinating and I have learned from additional reading that it is used in patients who have tumor metastases in several areas of the body. Where the medicine is not aggressively shrinking Deb’s tumors, it is returning her back to a normal quality of life with significantly less abdominal pain. Deb is now getting to enjoy all the wonderful dishes being delivered by her school and our neighborhood. Her weight is slowly returning and we are beginning to get back to our walks to return her muscle mass that she lost in her legs and arms. You all will be so proud of how strong she has been for all she has been thru. What an amazing woman I am married to be hit with this bombshell in the last month and begin walking again in the neighborhood in short spurts this weekend. Deb strives to be able to help herself and reduce her dependencies on others including being excited this weekend to be able to give self injections of Sandostatin. Her Oncologist was also very excited to hear of how well she was doing and indicated that her body is accepting the medicine quite well. I agree but also have to say that the medicine combined with all the love from friends, neighbors, and family has made all the difference.
Where do we go from here?
For now, we are comfortable that the Sandostatin is buying us time in the short term to take a breather and let Deb get back to her near normal self so we can explore in more details the other treatment options.
Emory
Through good friend Jim H. in our neighborhood, we have been blessed to talk and setup a meeting with Director of Interventional Radiology, Dr. Kevin Kim. What small world. Our friend Lisa in DC already spoke highly of him and studied under him. We are tentatively scheduled for general treatment consultation a week from this Monday at Emory. Focus will be on treatment discussions/comparisons between Chemoembolization and a new similar treatment option at Emory called SIR-Spheres microspheres.
MD Anderson
Through our friends for life, the Swansons, Erik’s brother Stephen made some phone calls/emails to get us up the food chain to setup treatment consultation with Dr. Steven Sherman, Chair of Endocrine Neoplasia and HD. I am in process of setting this consultation up this week and not sure if that will be a trip to Texas or a conference call.
I am totally overwhelmed and realize that Deb’s network is growing beyond anything I could ever imagine. I am simply in awe and so grateful every day for how much you all are doing to reach out to help our Deb.
Deb had a great weekend with her entire family at our house. We celebrated birthdays for sister Susan, cousin Reed, and Tommy. I can tell you from observation, love from family and friends is wonderful medicine to Deb’s body. I saw so much joy and smiles in her this weekend that I have not seen in the last month.
We love you Mom and Dad. Please know that we are sending much love and support healing that we have bundled up to you Mom in preparation for your back surgery this month.
So who is John Coffey?
Watched the Green Mile movie this weekend and I forgot how powerful John Coffey’s character was in the movie including removing the terminal illness from one woman. I wish it were that easy but know that we will never stop looking for the John Coffey "take it back" treatment out there in this wonderful world we live in.
Love to all and KTS!
Rod and Deb
How sweet it is to be loved by you.
James Taylor
I was told by Dr. Brodeur to not think like a surgeon and that you have to look at the global perspective of what is going on in Deb’s body. He said it is common for people to want to feel like you are doing something by moving forward with some sort of treatment to eradicate the medical condition. His overall justification that the chemoembolization is not an option at this time is based on the fact that the treatment will only shrink approximately 30-60% of the liver tumor. At this point, you still have a significant tumor that you are left with in your body and now along with additional poison as a result of the chemo treatment.
At this point, Dr. Brodeur is recommending for Deb to maintain on her daily injections of the Sandostatin treatment and go to a monthly injection this Wednesday. He continued to state that he has patients that are on this medication for years and are also back to work.
Well, what I live by in life is TBV. Trust by verify. With full respect of Dr. Brodeur, we are still going to pursue 3rd and 4th opinions from both Emory and MD Anderson on treatment options. We need to understand more from other specialists that it is okay to take “a wait and see approach” or should be moving forward with a more aggressive treatment.
With all that said, I can tell you that Deb has done amazingly well on the Sandostatin treatment in the last week and a half. We have seen Deb go from daily pain medicine to no request for pain medicine for abdominal pains. Her alertness is nearly back to normal. The medicine is quite fascinating and I have learned from additional reading that it is used in patients who have tumor metastases in several areas of the body. Where the medicine is not aggressively shrinking Deb’s tumors, it is returning her back to a normal quality of life with significantly less abdominal pain. Deb is now getting to enjoy all the wonderful dishes being delivered by her school and our neighborhood. Her weight is slowly returning and we are beginning to get back to our walks to return her muscle mass that she lost in her legs and arms. You all will be so proud of how strong she has been for all she has been thru. What an amazing woman I am married to be hit with this bombshell in the last month and begin walking again in the neighborhood in short spurts this weekend. Deb strives to be able to help herself and reduce her dependencies on others including being excited this weekend to be able to give self injections of Sandostatin. Her Oncologist was also very excited to hear of how well she was doing and indicated that her body is accepting the medicine quite well. I agree but also have to say that the medicine combined with all the love from friends, neighbors, and family has made all the difference.
Where do we go from here?
For now, we are comfortable that the Sandostatin is buying us time in the short term to take a breather and let Deb get back to her near normal self so we can explore in more details the other treatment options.
Emory
Through good friend Jim H. in our neighborhood, we have been blessed to talk and setup a meeting with Director of Interventional Radiology, Dr. Kevin Kim. What small world. Our friend Lisa in DC already spoke highly of him and studied under him. We are tentatively scheduled for general treatment consultation a week from this Monday at Emory. Focus will be on treatment discussions/comparisons between Chemoembolization and a new similar treatment option at Emory called SIR-Spheres microspheres.
MD Anderson
Through our friends for life, the Swansons, Erik’s brother Stephen made some phone calls/emails to get us up the food chain to setup treatment consultation with Dr. Steven Sherman, Chair of Endocrine Neoplasia and HD. I am in process of setting this consultation up this week and not sure if that will be a trip to Texas or a conference call.
I am totally overwhelmed and realize that Deb’s network is growing beyond anything I could ever imagine. I am simply in awe and so grateful every day for how much you all are doing to reach out to help our Deb.
Deb had a great weekend with her entire family at our house. We celebrated birthdays for sister Susan, cousin Reed, and Tommy. I can tell you from observation, love from family and friends is wonderful medicine to Deb’s body. I saw so much joy and smiles in her this weekend that I have not seen in the last month.
We love you Mom and Dad. Please know that we are sending much love and support healing that we have bundled up to you Mom in preparation for your back surgery this month.
So who is John Coffey?
Watched the Green Mile movie this weekend and I forgot how powerful John Coffey’s character was in the movie including removing the terminal illness from one woman. I wish it were that easy but know that we will never stop looking for the John Coffey "take it back" treatment out there in this wonderful world we live in.
Love to all and KTS!
Rod and Deb
How sweet it is to be loved by you.
James Taylor
Sunday, August 24, 2008
DC sheds a promising new light for Deb’s treatment plan
Our appointment with Dr. Ahlgren and Dr. Lisa Ignacio at George Washington University Medical Center was very informative and a definite worthwhile trip. We were so grateful to have them both in one room at GWH going over Deb’s current medical condition and recommended treatment options. Their knowledge, specialized experience, and compassion was overwhelming. Every new piece of knowledge learned in this journey no matter how small brings much hope and continued strength. As we were previously made aware, Dr. Ahlgren’s and Dr. Ignacio’s treatment options were much more aggressive than our current short term plan.
In summary, we came away with the following treatment plan for Deb:
1) Increase the current Sandostatin dosage
Dr. Ahlgren stated that Deb’s current dosage of 3 times daily (1ml each injection) was not aggressive enough and with confidence, recommended increasing the dosage to “tumor killing dose” which will in fact help shrink the tumor in Deb’s liver. He is sending his recommendation to Dr. Brodeur with the details.
2) Chemoembolization
We are going to pursue with our local Oncologists the chemembolization treatment which was not a initial recommended treatment option for Deb. Chemoembolization involves using a catheter to deploy chemo medicine directly to the liver tumor via the hepatic artery. What is
unique about this chemo treatment to the liver is that the medicine remains in the liver to directly attack the tumor and is not exposed to the other organs. There are definite side effects but as not as intense as other traditional chemotherapies. Dr. Lisa Ignacio already knows of a specialist at Emory that is very experienced with this treatment if we are unable to get treatment via our current Oncologists. There is usually 4 weeks between treatments to give Deb time to recover. It is estimated to see 30%-60% tumor shrinkage in 2 to 3 treatments. Even a 10% tumor shrinkage can drastically reduce the pain Deb is feeling in her abdomen area due to the tumor pushing against the liver membrane. The first treatment will require 24 to 36 hour hospital stay just to be sure Deb is feeling okay and there are no issues. MRIs will be used as a baseline in between each treatment to determine level of tumor shrinkage.
3) Hepatic Infusion Pump
In the event that there is not enough success shrinking the tumor via the chemoembolization treatments, we will also consider a Hepatic Infusion Pump which would be surgically implanted, charged, and allow consistent deployment of the chemo medicine via the hepatic artery to the liver. This is obviously very specialized and not available in all areas. Dr. Ahlgren is going to contact Dr. Nancy Kemeny in NYC who utilizes this treatment option to her patients. Treatment dosage would be every 1-2 weeks and then you simply turn the pump off. We hope this option will not be necessary for Deb but will begin to proactively pursue more information, contacts, etc.. in the event we need a backup plan to the chemoembolization.
What comes next after the chemoembolization?
Because Deb’s liver has the largest tumor, our current priority is on treating the liver first. When the time comes, we will explore Deb’s treatment options including possible resection in more depth for lesions on pancreas, kidney, and neck thyroid nodule.
So, our mission this week is to get the above treatment options approved by our current local Oncologists.
I have always believed that knowledge is power and is so more true than ever when it comes to fighting for the precious gift of Deb's life. THANK YOU. So many of you to thank so we just want to thank everyone again that helped get us to this point in Deb's journey. We have come so far in the last month and will give Deb then strength for what lies ahead in her journey.
You bring me joy
Anita Baker
In summary, we came away with the following treatment plan for Deb:1) Increase the current Sandostatin dosage
Dr. Ahlgren stated that Deb’s current dosage of 3 times daily (1ml each injection) was not aggressive enough and with confidence, recommended increasing the dosage to “tumor killing dose” which will in fact help shrink the tumor in Deb’s liver. He is sending his recommendation to Dr. Brodeur with the details.
2) Chemoembolization
We are going to pursue with our local Oncologists the chemembolization treatment which was not a initial recommended treatment option for Deb. Chemoembolization involves using a catheter to deploy chemo medicine directly to the liver tumor via the hepatic artery. What is
unique about this chemo treatment to the liver is that the medicine remains in the liver to directly attack the tumor and is not exposed to the other organs. There are definite side effects but as not as intense as other traditional chemotherapies. Dr. Lisa Ignacio already knows of a specialist at Emory that is very experienced with this treatment if we are unable to get treatment via our current Oncologists. There is usually 4 weeks between treatments to give Deb time to recover. It is estimated to see 30%-60% tumor shrinkage in 2 to 3 treatments. Even a 10% tumor shrinkage can drastically reduce the pain Deb is feeling in her abdomen area due to the tumor pushing against the liver membrane. The first treatment will require 24 to 36 hour hospital stay just to be sure Deb is feeling okay and there are no issues. MRIs will be used as a baseline in between each treatment to determine level of tumor shrinkage.3) Hepatic Infusion Pump
In the event that there is not enough success shrinking the tumor via the chemoembolization treatments, we will also consider a Hepatic Infusion Pump which would be surgically implanted, charged, and allow consistent deployment of the chemo medicine via the hepatic artery to the liver. This is obviously very specialized and not available in all areas. Dr. Ahlgren is going to contact Dr. Nancy Kemeny in NYC who utilizes this treatment option to her patients. Treatment dosage would be every 1-2 weeks and then you simply turn the pump off. We hope this option will not be necessary for Deb but will begin to proactively pursue more information, contacts, etc.. in the event we need a backup plan to the chemoembolization.
What comes next after the chemoembolization?
Because Deb’s liver has the largest tumor, our current priority is on treating the liver first. When the time comes, we will explore Deb’s treatment options including possible resection in more depth for lesions on pancreas, kidney, and neck thyroid nodule.
So, our mission this week is to get the above treatment options approved by our current local Oncologists.
I have always believed that knowledge is power and is so more true than ever when it comes to fighting for the precious gift of Deb's life. THANK YOU. So many of you to thank so we just want to thank everyone again that helped get us to this point in Deb's journey. We have come so far in the last month and will give Deb then strength for what lies ahead in her journey.
Deb continues to slowly adapt to her new Sandostatin hormonal injection other than the sickness directly after receiving each injection. We have seen in less than one week that she is not requesting her full dosage of pain medicine which I hope is due to the Sandostatin. With less pain medicine, Deb is very alert which is so enjoyable for all of us. Deb is not sleeping the entire night but with the ambien sleep medicine, is less restless She still gets tired walking any distance so we use her wheelchair on our much enjoyed walks in the neighborhood with her Mom and little Teddy.
As I watch what I think was the most memorable 2008 Beijing Olympics come to end tonight, so shall I.
Love to all and KTS!
Rod and DebYou bring me joy
Anita Baker
Wednesday, August 20, 2008
DC Bound to George Washington Hospital
With so much support from some special friends out there, we have confirmed appointment with Dr. Ahlgren on Thursday at 215pm at George Washington hospital. Deb and I are very excited and blessed to make this trip.
Until I can thank you in person, I want to stop and use this opportunity to personally thank all of you again through this journal that have been incredible support to Deb and our family. Lisa in DC for your continued support to us via Susan/Ellen, Barb/Kevin/Tina Y. for the DC airline tickets, Leslie/Scott for ticket, Lisa M. for using her points on DC hotel, house supplies, scrumptious meals, all Deb’s thoughtful birthday gifts/goodies, lunch excursions with friends, pedicures, Bonnie, weekend with Connie/Reed/Susan/Ellen, my parents special love/gifts, all the beautiful flowers from everyone which add great color to Deb’s journal and so many others that are too many to list.
Short Term Treatment Plan
Short Term Treatment Plan
We have completed the Oncologist appointments last week with Dr. Yaffe and today with Dr. Brodeur. Both Oncologists have confirmed for Deb to immediately taking the Sandostatin hormonal injection that is a synthetic base hormone that will assist in slowing the growth of the existing neuroendrocrine cancer cells. This treatment will not necessarily shrink the tumors but will help Deb feel better after she gets use to the injections. What’s nice is that we will administer the injections at the house. I was certified today and passed along to Bonnie tonight. In addition to the Sandostatin, Dr. Brodeur has referred us to a ENT (Ears Nose Throat) specialist to discuss removal of the 1 cm thyroid nodule in Deb’s neck which should reduce some of the sickness she is currently experiencing. After two weeks of self injections, Deb will get a monthly injection from nurse at Cumberland. We are still not clear on our longer term treatment plan options so I will hold off on listing the options here until we discuss further with Dr. Ahlgren in DC tomorrow.
Deb has been doing better this week and is more alert/less foggy from the pain medicine since we switched from a dose every 3 hours to a dose every 8 hours (time release). For the first time in the last few days she has been able to at least sleep for most of the night. Each new day we can tell she is a little bit more caught up on her rest but still many days to go. She is able to walk around fine on her own around the house but takes too much energy to go out shopping, etc.. without the use of a wheelchair.I was able to order the wheelchair today and along with her new handicap permit, will make her trips outside the house less complicated.
It was a good, productive day all around and we learned a lot more from Dr. Brodeur visit. We look forward to meeting you in person tomorrow Lisa and thank you for taking time out of your day to meet with Dr. Ahlgren and us.
Sleep well beautiful.
Love to all and KTS!
Rod and Deb
You're in my heart, you're in my soul.. You'll be my breath should I grow old.. You are my lover, you're my best friend.. You're in my soul
Rod Stewart
You're in my heart, you're in my soul.. You'll be my breath should I grow old.. You are my lover, you're my best friend.. You're in my soul
Rod Stewart
Tuesday, August 19, 2008
Happy Birthday Deb
We love you,
Rod, Taylor, Tommy, family and friends
Loving you is easy cause you're beautiful.....
Minnie Ripperton
Minnie Ripperton
Sunday, August 17, 2008
Thursday, August 14, 2008
MEN 1/Neuroendocrine Stage IV
On behalf of Deb and our family, we want thank all of you at Deb's school, our neighboorhood, friends, and coworkers for the overwhelming love and support for Deb. Bless you all!
MEN 1/Neuroendocrine Stage IV
We have received most of the test results from Deb's testing over the last 2 weeks and will provide brief summary from what I can decipher from the documentation until we meet with Dr. Yaffe tomorrow to obtain further details. Her initial diagnosis from Dr. Brodeur is called MEN 1/Neuroendocrine stage IV. The CT Scan results conclude that her cancer is primarily in her right hepatic lobe of liver and small lesion also on the left kidney. Her pancreas contains a well define cystic lesion. The lesion in the pancreatic tail is also in intimate contact with the left adreanl gland. The MRI brain scan was good but found also a small 1cm left thyroid nodule in her neck. Deb has also been diagnosed with hypercalcemia and may be related to some of Deb's confusion that she is currently experiencing along with the hormonal changes and hypermorphone pain medicine.
Initial Treatment
We will know more details about the plan tomorrow with 11am appointment with Dr. Yaffe but from the Dr. Brodeur's notes, he indicates to start Deb immediately on Sandostatin. I don't know all the details yet but it is hormonal treatment and suppose slow down the growth of the cancer cells and help to keep Deb comfortable. Some of the other treatments mentioned include liver emboolization or chemoembolization. The chemo options include Temodar or Strep/Adria. There is also possibility of adding alpha-interferon at a later date, after dose-escalation of Sandostatin.
2nd Opinion
Deb's medical complexity obviously warrants a second opinion and we are currently working with Susan and Lisa in DC. We are beginning to plan a flight to DC asap to meet with one of the Oncologist's at George Washington hospital that specialize in neuronendrocrine tumors. Lisa has already recommended Dr. Ahlgren and will be an integral part in expediting consultations and possible treatments if necessary for Deb. Lisa you are amazing and I cannot wait to meet you! What is surprising to hear is that Dr. Ahlgren knows of no one in Atlanta that specializes in neuroendocrine tumors.
Our next steps are to get results from the Octreoscan which I am picking up at lunch today (Thanks Jamie!) and Northside ER visit. We will hope to get referral from our Friday appointment with Dr. Yaffe to meet with Dr. Ahlgren in DC.
Currently, Deb continues to rest comfortably at the house with the care from her wonderful mom, Bonnie during the day while I am work. The hydromorphone pain medicine continues to aid her continued pain in the right abdomen area which unfortunately has not gotten any better. It has really slowed down her from being able to get around the house along with heavy sedation from the narcotic. Her fevers have been reduced alot over the last four days and see only briefly at night before bed. If you talk to her, just know that she is very aware of everything but her intermittent pausing and confusion is due to all the different changes in her body.
Thank you Mom and Dad for the beautiful flowers and goodies for Deb. Know that we are all thinking about you Mom and your planned back surgery. Our prayers will be with you always for a speedy recovery. We love you :)
We anxiously await our appointment with Dr. Yaffe so we can move forward with treating our beautiful Deb.
We love you and KTS!
Rod and Deb
MEN 1/Neuroendocrine Stage IV
We have received most of the test results from Deb's testing over the last 2 weeks and will provide brief summary from what I can decipher from the documentation until we meet with Dr. Yaffe tomorrow to obtain further details. Her initial diagnosis from Dr. Brodeur is called MEN 1/Neuroendocrine stage IV. The CT Scan results conclude that her cancer is primarily in her right hepatic lobe of liver and small lesion also on the left kidney. Her pancreas contains a well define cystic lesion. The lesion in the pancreatic tail is also in intimate contact with the left adreanl gland. The MRI brain scan was good but found also a small 1cm left thyroid nodule in her neck. Deb has also been diagnosed with hypercalcemia and may be related to some of Deb's confusion that she is currently experiencing along with the hormonal changes and hypermorphone pain medicine.
Initial Treatment
We will know more details about the plan tomorrow with 11am appointment with Dr. Yaffe but from the Dr. Brodeur's notes, he indicates to start Deb immediately on Sandostatin. I don't know all the details yet but it is hormonal treatment and suppose slow down the growth of the cancer cells and help to keep Deb comfortable. Some of the other treatments mentioned include liver emboolization or chemoembolization. The chemo options include Temodar or Strep/Adria. There is also possibility of adding alpha-interferon at a later date, after dose-escalation of Sandostatin.
2nd Opinion
Deb's medical complexity obviously warrants a second opinion and we are currently working with Susan and Lisa in DC. We are beginning to plan a flight to DC asap to meet with one of the Oncologist's at George Washington hospital that specialize in neuronendrocrine tumors. Lisa has already recommended Dr. Ahlgren and will be an integral part in expediting consultations and possible treatments if necessary for Deb. Lisa you are amazing and I cannot wait to meet you! What is surprising to hear is that Dr. Ahlgren knows of no one in Atlanta that specializes in neuroendocrine tumors.
Our next steps are to get results from the Octreoscan which I am picking up at lunch today (Thanks Jamie!) and Northside ER visit. We will hope to get referral from our Friday appointment with Dr. Yaffe to meet with Dr. Ahlgren in DC.
Currently, Deb continues to rest comfortably at the house with the care from her wonderful mom, Bonnie during the day while I am work. The hydromorphone pain medicine continues to aid her continued pain in the right abdomen area which unfortunately has not gotten any better. It has really slowed down her from being able to get around the house along with heavy sedation from the narcotic. Her fevers have been reduced alot over the last four days and see only briefly at night before bed. If you talk to her, just know that she is very aware of everything but her intermittent pausing and confusion is due to all the different changes in her body.
Thank you Mom and Dad for the beautiful flowers and goodies for Deb. Know that we are all thinking about you Mom and your planned back surgery. Our prayers will be with you always for a speedy recovery. We love you :)
We anxiously await our appointment with Dr. Yaffe so we can move forward with treating our beautiful Deb.
We love you and KTS!
Rod and Deb
Saturday, August 9, 2008
High fever weekend
Deb has just been admitted to Northside Hospital Saturday evening under the care of Dr. Funk for thorough additional testing due to sporadic high fevers for the last two days. They are going to try to determine source of fevers that she has been experiencing. We started with Kaiser Emergency with Dr. Beard and after explaining Deb’s last 48 hours, he agreed that she needs to be admitted immediately to Northside which is the best news we have heard.
It started Thursday night with Deb experiencing high levels of confusion while running a temperature of 101. We contributed some of this possibly to the Fentanyl narcotic patch and decided to remove first thing Friday morning. Next morning Deb was back to her normal self when we removed the patch so I went to work. During the day, her temperature went back up and at the same time so did her confusion and reasoning levels. Tommy called me on my way home and said to get home quick because Mom was very confused and saying things that did not even make any sense. After talking with Kaiser that night, we agreed that this may be related to the Fentanyl still in her body and decided to sleep it off and make decision Saturday morning. Thank you Tommy and so proud of you!
Saturday morning Deb’s temperature was normal again with little to no confusion. I was elated and was hoping this was due to no more fentanyl in her body. All was great until mid afternoon two hours after Susan and Ellen came over. Deb had been resting and when she came down to sit with us her temperature began rising to 102.1 and so did the confusion once again. After another hour and some ibuprofen, her temperature rose to 102.9. That is when we said it’s time to go in!
What was odd is we gave Deb some ice chips and then I went upstairs to get her some clothes. Within minutes of coming back downstairs, Susan said her temperature was dropping and I could immediately tell from her just looking more “peppy”. What we begin to learn from all this was that Deb’s confusion would continue to get worse the higher her temperature. By the time we got to the Emergency room, Deb’s temperature returned to normal.
Most of the blood and other tests have been completed tonight and Deb getting ready to move to her overnight room upstairs at Northside. Met with the IMS, Dr. Espinosa and initial findings is a urinary tract infection that too early to tell if related to the fevers. She is doing fine eating her ice, not running a temperature and watching the Beijing 2008 Olympics.
Was able to get some preliminary results from Deb’s follow up CTScan and MRIs from the Kaiser nurse tonight. I will post later after I read thru them.
We are learning quickly from friends (thanks Lisa!) that trips to the emergency room continues to expedite everything and hopefully get Deb closer to a solid game plan.
Good night beautiful and KTS :)
Rod
p.s. Thank you Connie, Susan, Ellen, and Anita!
Update 08.10.08
Deb has been at Northside all day and has not had anymore high temperatures today. They have not yet determined the source of the fevers and as a result, decided to keep Deb for another night since they do a wonderful job with pain management that we cannot do at the house. Now that her pain medicine is completely out of her system, Deb started feeling pain in her right abdomen again and they have given her new pain medicine called dilotin. It has helped alot with her pain but has made her quite tired, foggy, and sleepy all day. Deb was also anemic and received a blood transfusion today.
We were treated with a special visit from Oncologist, Dr. Yafee, who was on call this weekend from Kaiser. This is the first time that we got to meet him after hearing great things about him. He has acknowledged all of the tests that have been given to Deb by Dr. Brodeur and told us what to expect for the Nuclear medicine test tomorrow and Tuesday. Because Deb is already at NS, we are going to see if we can have this scheduled test here in place of Glennlake. We are waiting till we talk to Dr. Brodeur early this week so we can have the big picture test results of everything.
Talked with Deb's Mom Bonnie and sister Susan today. Bonnie will be flying in Tuesday night to stay with us and give Deb her much needed love and attention to keep her strong. Thank you both and it means very much to Deb, me and the boys with you being here.
Deb was missing her bed which I always refer to as her nest so much so I went back to NS tonight to bring her some of her favorite pillows and blanket. I can tell it made all the difference as she snuggled right into one her typical peaceful sleep.
Sweet dreams my beautiful Deb and I will see you in the morning.
We love you and KTS.
It started Thursday night with Deb experiencing high levels of confusion while running a temperature of 101. We contributed some of this possibly to the Fentanyl narcotic patch and decided to remove first thing Friday morning. Next morning Deb was back to her normal self when we removed the patch so I went to work. During the day, her temperature went back up and at the same time so did her confusion and reasoning levels. Tommy called me on my way home and said to get home quick because Mom was very confused and saying things that did not even make any sense. After talking with Kaiser that night, we agreed that this may be related to the Fentanyl still in her body and decided to sleep it off and make decision Saturday morning. Thank you Tommy and so proud of you!
Saturday morning Deb’s temperature was normal again with little to no confusion. I was elated and was hoping this was due to no more fentanyl in her body. All was great until mid afternoon two hours after Susan and Ellen came over. Deb had been resting and when she came down to sit with us her temperature began rising to 102.1 and so did the confusion once again. After another hour and some ibuprofen, her temperature rose to 102.9. That is when we said it’s time to go in!
What was odd is we gave Deb some ice chips and then I went upstairs to get her some clothes. Within minutes of coming back downstairs, Susan said her temperature was dropping and I could immediately tell from her just looking more “peppy”. What we begin to learn from all this was that Deb’s confusion would continue to get worse the higher her temperature. By the time we got to the Emergency room, Deb’s temperature returned to normal.
Most of the blood and other tests have been completed tonight and Deb getting ready to move to her overnight room upstairs at Northside. Met with the IMS, Dr. Espinosa and initial findings is a urinary tract infection that too early to tell if related to the fevers. She is doing fine eating her ice, not running a temperature and watching the Beijing 2008 Olympics.
Was able to get some preliminary results from Deb’s follow up CTScan and MRIs from the Kaiser nurse tonight. I will post later after I read thru them.
We are learning quickly from friends (thanks Lisa!) that trips to the emergency room continues to expedite everything and hopefully get Deb closer to a solid game plan.
Good night beautiful and KTS :)
Rod
p.s. Thank you Connie, Susan, Ellen, and Anita!
Update 08.10.08
Deb has been at Northside all day and has not had anymore high temperatures today. They have not yet determined the source of the fevers and as a result, decided to keep Deb for another night since they do a wonderful job with pain management that we cannot do at the house. Now that her pain medicine is completely out of her system, Deb started feeling pain in her right abdomen again and they have given her new pain medicine called dilotin. It has helped alot with her pain but has made her quite tired, foggy, and sleepy all day. Deb was also anemic and received a blood transfusion today.
We were treated with a special visit from Oncologist, Dr. Yafee, who was on call this weekend from Kaiser. This is the first time that we got to meet him after hearing great things about him. He has acknowledged all of the tests that have been given to Deb by Dr. Brodeur and told us what to expect for the Nuclear medicine test tomorrow and Tuesday. Because Deb is already at NS, we are going to see if we can have this scheduled test here in place of Glennlake. We are waiting till we talk to Dr. Brodeur early this week so we can have the big picture test results of everything.
Talked with Deb's Mom Bonnie and sister Susan today. Bonnie will be flying in Tuesday night to stay with us and give Deb her much needed love and attention to keep her strong. Thank you both and it means very much to Deb, me and the boys with you being here.
Deb was missing her bed which I always refer to as her nest so much so I went back to NS tonight to bring her some of her favorite pillows and blanket. I can tell it made all the difference as she snuggled right into one her typical peaceful sleep.
Sweet dreams my beautiful Deb and I will see you in the morning.
We love you and KTS.
Wednesday, August 6, 2008
It was a whacky day
Tommy just looked over at me tonight with Teddy in his lap and said "Dad, today was a whacky day huh". I love you Tommy.
Deb's MRI went fine in Gwinnett today and uneventful until I got a call from Tommy's cell phone while I was waiting for them to finish up with Deb's MRI. It was one of Tommy's friends who told me that Tommy just passed out and hit his head on the pavement while riding bikes in our adjoining neighborhood. Because Tommy has epilepsy, my immediate thought was he was having a seizure which he is taking medicine to prevent. Of course, it was a blazing 95 degrees and middle of day when this all happened so I was trying to apply common sense. Was able to talk to an adult from Tommy's phone that happened to be outside the Unity church nearby and heard Tommy's friends calling for help. Bless you Dave and find you this Sunday to express our gratitude. He was a big help and even drove Tommy home where his big brother Taylor was standing by. Since this is public, I will keep names anonymous but was very proud of Tommy's friends on how well they handled everything. You know who you are and thank you buddies. Of course you too Tay for taking care of your little bro till we got home! I love you Tay.
Mom handled the news surprisingly well went she came out from her MRI. We left Gwinnett and headed home to take Tommy to Town Park for check up. Fortunately, Tommy was shaken up but is just fine except for his new goose egg on his head. Dr. Adan agreed that this was most likely due to the heat and not seizure related based on the symptons.
Deb's tests have been submitted to Oncologist and yeah that there are no more tests for rest of this week. You get to relax baby. Deb is resting and doing much much better with the new pain reliever patch. We are not expecting to hear any more news until after Deb's final nuclear medicine test next Monday/Tuesday.
Thank you for wonderful dinner Barb and Randy. We enjoyed your company tonight!
Paul and Ingrid, Deb got your great book and is so perfect for her and very inspiring. Thank you!
Thanks to all for your cards and KTS!
Rod and Deb
p.s. i love cell phones :)
Deb's MRI went fine in Gwinnett today and uneventful until I got a call from Tommy's cell phone while I was waiting for them to finish up with Deb's MRI. It was one of Tommy's friends who told me that Tommy just passed out and hit his head on the pavement while riding bikes in our adjoining neighborhood. Because Tommy has epilepsy, my immediate thought was he was having a seizure which he is taking medicine to prevent. Of course, it was a blazing 95 degrees and middle of day when this all happened so I was trying to apply common sense. Was able to talk to an adult from Tommy's phone that happened to be outside the Unity church nearby and heard Tommy's friends calling for help. Bless you Dave and find you this Sunday to express our gratitude. He was a big help and even drove Tommy home where his big brother Taylor was standing by. Since this is public, I will keep names anonymous but was very proud of Tommy's friends on how well they handled everything. You know who you are and thank you buddies. Of course you too Tay for taking care of your little bro till we got home! I love you Tay.
Mom handled the news surprisingly well went she came out from her MRI. We left Gwinnett and headed home to take Tommy to Town Park for check up. Fortunately, Tommy was shaken up but is just fine except for his new goose egg on his head. Dr. Adan agreed that this was most likely due to the heat and not seizure related based on the symptons.
Deb's tests have been submitted to Oncologist and yeah that there are no more tests for rest of this week. You get to relax baby. Deb is resting and doing much much better with the new pain reliever patch. We are not expecting to hear any more news until after Deb's final nuclear medicine test next Monday/Tuesday.
Thank you for wonderful dinner Barb and Randy. We enjoyed your company tonight!
Paul and Ingrid, Deb got your great book and is so perfect for her and very inspiring. Thank you!
Thanks to all for your cards and KTS!
Rod and Deb
p.s. i love cell phones :)
Tuesday, August 5, 2008
LB Diagnosis and On the Go with Rod & Deb
On Monday, Deb was able to talk via phone with both the Gastroenterologist, Dr. Kadir and her new Oncologist, Dr. David Brodeur, MD. I was not able to conference in so this is only brief update.
There was not much update from Dr. Kadir other than recommendations to meet with Oncologist. Also talked with Deb's new Oncologist, Dr. Brodeur from Cumberland facility and who is very good. He has reviewed Deb’s liver biopsy results and we were able to get a copy. The results were brief and not conclusive in that they did not determine the origin or type of neuroendocrine cancer cells .
Liver Biopsy diagnosis summary for our Doctor friends, “Liver, fine needle aspirate and core biopsy: Neuronendocrine neoplasm. The aspirate smears demonstrate sheets and small groups of small and uniform neoplastic cells with round eccentrically located nuclei, inconspicuous nucleoli and limited amount of eosinophilic cytoplasm. The core biosy show neoplastic nests embedded within the fibrous stroms. Rare mitotic figures are present. Immunohistrochemical studies demonstrate immonocreactivity of the neoplastic cells for synaptopysin and pakeratin AE1/3, and negative reactivity for chromogranin, CK7, and CK20. These findings are consistent with neuroendocrine neoplasm.
At this point, Dr. Brodeur is requiring some additional tests before he can share his treatment recommendations with us.
Next Steps
1) TODAY. Follow up CTScan with contrast on Deb’s chest and complete pelvis area (Northside Emergency). This was originally scheduled for tomorrow morning at 1030am but she is having this performed as I am writing this update from the NorthSide Emergency center. Deb had a bad night due to unbearable pain in her right side around her liver area and so we went into the emergency room this morning around 9am. The only guess at this point is that it was related to the liver biopsy. Dr. Brodeur indicated that Deb’s hormones are all messed up due to all of this and can be the cause of additional weakness, fever, and nausea. They were able to give Deb morphine for the pain and some anti nauseating medicine so she can handle the barium liquid required for the CT Scan. Dr. Joe Funk will be working with Radiology to facilitate the CTScan with instructions from Dr. Brodeur.
UPDATE (08/05, 9pm) The CTScan fortunately did not show anything new in Deb's chest and lower pelvic area. They were unable to determine root cause as to why Deb was experiencing additional abdomnen pain and gave her new prescription for a patch style pain medicine that last 72 hours and less intense as the hydromorphin that she was currently taking. Deb is resting much better tonight. Good night beautiful!
Thank you so much Pam for the wonderful home cook meal and you are a great cook. Deb, the boys and I absolutely loved it! Do you want to come live with us? ;)
2) Tomorrow @ 1030am. MRI of the brain and neck with/without contrast (Gwinett Medical). Dr. Brodeur ordered this MRI most likely to get some imaging of Debbie's parathyroids (neck) and pituitary (brain). This is similar test that Deb's sister Susan had to have back in 88. Thank you for update Susan.
3) Next Monday, 08/11. Nuclear Medicine Octreotide Test (GlenLake Medical). This is a two day test. First injection at 1030am on Monday and return back the same day at 230pm for additional injection. Return on 08/12 Tuesday @ 230pm for pictures. .
The boys are doing fine. They are loving the juice machine and are now our new certified juicers to help me keep their Mom energized daily.
Love to all and KTS!
Rod and Deb
There was not much update from Dr. Kadir other than recommendations to meet with Oncologist. Also talked with Deb's new Oncologist, Dr. Brodeur from Cumberland facility and who is very good. He has reviewed Deb’s liver biopsy results and we were able to get a copy. The results were brief and not conclusive in that they did not determine the origin or type of neuroendocrine cancer cells .
Liver Biopsy diagnosis summary for our Doctor friends, “Liver, fine needle aspirate and core biopsy: Neuronendocrine neoplasm. The aspirate smears demonstrate sheets and small groups of small and uniform neoplastic cells with round eccentrically located nuclei, inconspicuous nucleoli and limited amount of eosinophilic cytoplasm. The core biosy show neoplastic nests embedded within the fibrous stroms. Rare mitotic figures are present. Immunohistrochemical studies demonstrate immonocreactivity of the neoplastic cells for synaptopysin and pakeratin AE1/3, and negative reactivity for chromogranin, CK7, and CK20. These findings are consistent with neuroendocrine neoplasm.
At this point, Dr. Brodeur is requiring some additional tests before he can share his treatment recommendations with us.
Next Steps
1) TODAY. Follow up CTScan with contrast on Deb’s chest and complete pelvis area (Northside Emergency). This was originally scheduled for tomorrow morning at 1030am but she is having this performed as I am writing this update from the NorthSide Emergency center. Deb had a bad night due to unbearable pain in her right side around her liver area and so we went into the emergency room this morning around 9am. The only guess at this point is that it was related to the liver biopsy. Dr. Brodeur indicated that Deb’s hormones are all messed up due to all of this and can be the cause of additional weakness, fever, and nausea. They were able to give Deb morphine for the pain and some anti nauseating medicine so she can handle the barium liquid required for the CT Scan. Dr. Joe Funk will be working with Radiology to facilitate the CTScan with instructions from Dr. Brodeur.
UPDATE (08/05, 9pm) The CTScan fortunately did not show anything new in Deb's chest and lower pelvic area. They were unable to determine root cause as to why Deb was experiencing additional abdomnen pain and gave her new prescription for a patch style pain medicine that last 72 hours and less intense as the hydromorphin that she was currently taking. Deb is resting much better tonight. Good night beautiful!
Thank you so much Pam for the wonderful home cook meal and you are a great cook. Deb, the boys and I absolutely loved it! Do you want to come live with us? ;)
2) Tomorrow @ 1030am. MRI of the brain and neck with/without contrast (Gwinett Medical). Dr. Brodeur ordered this MRI most likely to get some imaging of Debbie's parathyroids (neck) and pituitary (brain). This is similar test that Deb's sister Susan had to have back in 88. Thank you for update Susan.
3) Next Monday, 08/11. Nuclear Medicine Octreotide Test (GlenLake Medical). This is a two day test. First injection at 1030am on Monday and return back the same day at 230pm for additional injection. Return on 08/12 Tuesday @ 230pm for pictures. .
The boys are doing fine. They are loving the juice machine and are now our new certified juicers to help me keep their Mom energized daily.
Love to all and KTS!
Rod and Deb
Sunday, August 3, 2008
Jack is in the House
Deb's liver biopsy test results were not yet available last Friday to us and we are hoping to meet with the Oncologist as early as this Monday or Tuesday in Cumberland area to go over results and next steps.
In addition to Deb's energy healing lap dog Teddy and love from all our beautiful family/friends, we brought home the Jack La Lanne juicing machine this weekend to add to Deb's personal healing kit.
A lot of our friends and family have highly recommended a juice machine. We have loaded up on all kinds of wonderful fresh fruits and vegetables to jet fuel our bodies. Awesome machine for the whole family.
It is a peace of mind to know Deb is getting her daily energy boost and filling her beautiful body with natural goodies which will be very important for the days to come.
Thank you Jack and KTS!
Rod and Deb
In addition to Deb's energy healing lap dog Teddy and love from all our beautiful family/friends, we brought home the Jack La Lanne juicing machine this weekend to add to Deb's personal healing kit.
A lot of our friends and family have highly recommended a juice machine. We have loaded up on all kinds of wonderful fresh fruits and vegetables to jet fuel our bodies. Awesome machine for the whole family.
It is a peace of mind to know Deb is getting her daily energy boost and filling her beautiful body with natural goodies which will be very important for the days to come.
Thank you Jack and KTS!
Rod and Deb
Tuesday, July 29, 2008
Liver Biopsy Scheduled
After a day and half on the phone between Kaiser and Piedmont, we were able to finally expedite Deb's Liver Biopsy from August 5th to Wednesday (07/30) morning at 730am, Piedmont Hospital (1968 Peacthree Street, Atlanta)
The test was ordered by Gastroenterologist, Dr. Rodney Harris from the Jonesboro facility.
Updated 07/30: Radiologist Dr. Liou performed the biopsy with Lori Little, PAC (physician assistant certified). The test began at approximately 1030am and took less than hour between prep and actual biopsy. Recovery is a 4 hour bed rest to be sure Deb's liver shows no elevated internal bleeding from the puncture necessary to take the tissue samples. Dr. Liou will do high level view of the cells via microscope to be sure that he received enough samples for full lab test. From the lab, they will run a standard sub set of over a total 1000 tests possible on the tissue for full diagnosis.
Biopsy went normal as scheduled with no complications and Deb is resting fine. After the biopsy, we talked with the Dr. Liou who completed Deb’s liver biopsy around 1130am.. Based on what he has seen so far, he feels the cancerous cells originated in the pancreas and are neuroendocrine type tumors. Where any news of cancer cells in your body is not positive news, it is good news to have cancerous cells that are neuroendocrine type since he indicated they respond quite well to treatment. Although not much but this little bit of good news has brought a much needed smile to Deb.
More information here on neuroendocrine type tumours
Upon completion of the liver biopsy, the Radiologist will send the test results to Dr. Rodney Harris who will schedule a review/follow up with us. Because he is in Jonesboro which is way south of Atlanta, we may try to reschedule to a Gastroenterologist closer to our area.
Most likely and hopefully shortly after meeting with the Gastroenterologist, there will be an immediate follow up with a Oncologist to discuss the origin of lesions and what Deb's treatment options will be. In fact, Deb is already proactively contacting Oncologists from list that Susan provided.
What you learn real quick .........
Not that we are not totally grateful in every way imaginable for Deb's great care but never be afraid to pick up the phone and help assist these medical facilities with the nightmare of scheduling for tests between different networks. Otherwise, you can be just like another email sitting in somebody's inbox waiting for response.
Thank you Nika. You have a hug coming from me tomorrow morning!
Update 07/30: Hug completed :)
KTS!
Rod and Deb
The test was ordered by Gastroenterologist, Dr. Rodney Harris from the Jonesboro facility.
Updated 07/30: Radiologist Dr. Liou performed the biopsy with Lori Little, PAC (physician assistant certified). The test began at approximately 1030am and took less than hour between prep and actual biopsy. Recovery is a 4 hour bed rest to be sure Deb's liver shows no elevated internal bleeding from the puncture necessary to take the tissue samples. Dr. Liou will do high level view of the cells via microscope to be sure that he received enough samples for full lab test. From the lab, they will run a standard sub set of over a total 1000 tests possible on the tissue for full diagnosis.
Biopsy went normal as scheduled with no complications and Deb is resting fine. After the biopsy, we talked with the Dr. Liou who completed Deb’s liver biopsy around 1130am.. Based on what he has seen so far, he feels the cancerous cells originated in the pancreas and are neuroendocrine type tumors. Where any news of cancer cells in your body is not positive news, it is good news to have cancerous cells that are neuroendocrine type since he indicated they respond quite well to treatment. Although not much but this little bit of good news has brought a much needed smile to Deb.
More information here on neuroendocrine type tumours
Upon completion of the liver biopsy, the Radiologist will send the test results to Dr. Rodney Harris who will schedule a review/follow up with us. Because he is in Jonesboro which is way south of Atlanta, we may try to reschedule to a Gastroenterologist closer to our area.
Most likely and hopefully shortly after meeting with the Gastroenterologist, there will be an immediate follow up with a Oncologist to discuss the origin of lesions and what Deb's treatment options will be. In fact, Deb is already proactively contacting Oncologists from list that Susan provided.
What you learn real quick .........
Not that we are not totally grateful in every way imaginable for Deb's great care but never be afraid to pick up the phone and help assist these medical facilities with the nightmare of scheduling for tests between different networks. Otherwise, you can be just like another email sitting in somebody's inbox waiting for response.
Thank you Nika. You have a hug coming from me tomorrow morning!
Update 07/30: Hug completed :)
KTS!
Rod and Deb
Sunday, July 27, 2008
You Got to Know It!
Thank you Connie for finding time in your hectic birmingham schedule to spend the weekend with us. You are such a true gift to us with all of your love, knowledge, and spiritual guidance. Your personal Connie suite where you can unwind and get some much deserved R&R will always be waiting your next visit. It was by coincidence that when we took Connie right up the street to the Unity North church today, Edwene Gaines, a world renown spiritual speaker and writer was the guest speaker. Connie very excitingly told us she also is from Birmingham and has been keeping up with her books and lecturers for over the last 25 years. After church, Connie was also able to talk to Edwene and explain why she was here this weekend with her niece Deb. After explaining Deb's condition, one of things that touched us that Edwene told Connie was that Deb "will heal just find and remember always" (while pointing at Connie...) "you just got to know it"!
p.s. Wayne that was nice of you to give that wonderful woman Connie your sweet, new Cadi for keepsies. Looks great on her :)
Susan you are awesome as always and just let me know when you want to move in! Thank you for the great information update from Lisa. Seeing you and Pippy was the perfect way to end the weekend.
Next Steps
Unfortunately, we did not get confirmation last Friday on date/time for Deb's last test for now which is the Liver Biopsy to remove tissue and determine the origin of the cancer cells. We should have the date/time first thing Monday morning and will be shooting for early as Tuesday. We were able to get alot more advice from Lisa in Washington thru Susan and pending outcome of this test, our goal will be to have a game plan in place before end of this week.
As always, thank you for all your love and prayers.
Keeping the strength!
Rod and Deb
Teddy.
Deb's lap dog and personal energy healer.
Saturday, July 26, 2008
Deb's Survival Kit
We were overwhelmed with support visit yesterday evening from Susan and some of our dearest friends.
Deb's sister Susan brought over the "Deb Survival Kit" which I just have to say the binder was one of coolest that I had to take a pic of it. Susan said her dear friend Sara created this especially for Deb from lessons learned on her previous journey. Thank you Sara, we love this and is a very thoughtful gift that will be of great use to us. It included dividers, pouches, USB stick, and all kinds of great templates to organize the tons of medical papers that you quickly accumulate. Thank you for the books, DVDs, CDs, and other fun stuff (love the truffles) Angel Susan, you are the best sister a sister can have.
Thank you Swansons and Malveas for the dinner and deserts.
Arun, Be sure to catch some waves for me in the mighty Gulf as I have taught you well Grasshopper from when we shredded those mighty hawaiian waves on Oahu. Please pass along my surfing secrets to Ron and David too. See my buddy Tim Carr, owner of Fluid Surf Shop in Fort Walton to set you up with surfboards.
Thank you again for the goodies. Just seeing you all is the best comfort to Deb and us all!
We love you,
Rod and Deb
p.s. If you have not listened to Randy Pausch's "The Last Lecture", see the link to the right. What a true inspirational man!
Friday, July 25, 2008
C'scopy Looks Great!
Deb successfully completed her colonoscopy at 630am this morning with Dr. Hala Toubbeh at the Perimeter Surgery Center. This was scheduled by Dr. Kabir Quadir in Gastroneterology on Wednesday. I am relieved to tell you that she did not find any damage to the Deb's colon/intestinal area which is the first great news we have had.
I could tell that Deb actually felt better after the c'scopy and is already home resting very comfortably in her favorite nest. The whole process only takes less than an hour. It is the day before that is a challenge in that you basically cannot eat anything and only drink clear liquids. It was funny that she was still a peaceful, sleeping beauty when the nurse told me she was ready to go. I didnt want to wake her up but I could tell they needed the beds to bring in some fresh cattle. Her anaesthesiologist who referred to himself as the iranian cocktail doctor must have fixed her a good one! :)
Next Steps
Because there was no damage found from this test, that means the Liver biopsy will definitely be the next test for Deb to take tissue sample. According to Dr. Toubbeh, the cells within the tissue sample should determine source of the lesion masses on her liver. I don't know the date or time yet but we are waiting phone call and guessing that it should be next Monday or Tuesday.
Keeping the strength!
I could tell that Deb actually felt better after the c'scopy and is already home resting very comfortably in her favorite nest. The whole process only takes less than an hour. It is the day before that is a challenge in that you basically cannot eat anything and only drink clear liquids. It was funny that she was still a peaceful, sleeping beauty when the nurse told me she was ready to go. I didnt want to wake her up but I could tell they needed the beds to bring in some fresh cattle. Her anaesthesiologist who referred to himself as the iranian cocktail doctor must have fixed her a good one! :)
Next Steps
Because there was no damage found from this test, that means the Liver biopsy will definitely be the next test for Deb to take tissue sample. According to Dr. Toubbeh, the cells within the tissue sample should determine source of the lesion masses on her liver. I don't know the date or time yet but we are waiting phone call and guessing that it should be next Monday or Tuesday.
Keeping the strength!
Wednesday, July 23, 2008
CTScan Results
Quick update on Deb from doctor visit today. Sorry I am learning as I go so bear with me as I attempt to explain from deciphering my notes from meeting with doctor today.
We met with the Gastro Intestinal Specialist, Dr. Kabir Quadir in Jonesboro today and unfortunately he confirmed from CTScan findings with 99% certainty that the lesions are some form of cancer with the largest mass on her liver.
The other lesions are spread out between the liver, kidney, and pancreas areas. He could not yet tell us what type of cancer and where did it originate. In order to determine the origination, Deb will require two more tests.
Next Steps
1) Deb will have a colonoscopy Friday morning, 630am at Perimeter Surgical Center. This will allow them to explore entire intestine in search of any additional lesions, etc… and possibly determine if this is where the cancer originated.
2) Next week most likely on Monday or Tuesday, Deb will have a Liver Biopsy at Piedmont Hospital so they can take tissue samples to perform necessary lab work.
3) We will then have follow up consultation with Oncologist to discuss treatment which most likely will start with Chemotherapy. We are also interested in surgical removal but too early to tell if this will be an option for Deb.
4) Ellen’s sister, Lisa is Doctor in Washington and has been awesome to Deb. She told us to send her all the test results as we get them and including the CTScan images so she can review and share with the doctors up there for additional opinion. She already knows of a surgeon that specializes in removal of tumors, etc.. in the liver, pancreas, kidney areas and just so happens to be in the Kaiser network which is ours too. THANK YOU SO MUCH LISA. YOU’RE AN ANGEL! WE LOVE YOU TOO SUSAN AND ELLEN!.
That is what we know so far and will continue to keep you updated on days to come.
Keeping the Strength and we love you all!
Rod
We met with the Gastro Intestinal Specialist, Dr. Kabir Quadir in Jonesboro today and unfortunately he confirmed from CTScan findings with 99% certainty that the lesions are some form of cancer with the largest mass on her liver.
The other lesions are spread out between the liver, kidney, and pancreas areas. He could not yet tell us what type of cancer and where did it originate. In order to determine the origination, Deb will require two more tests.
Next Steps
1) Deb will have a colonoscopy Friday morning, 630am at Perimeter Surgical Center. This will allow them to explore entire intestine in search of any additional lesions, etc… and possibly determine if this is where the cancer originated.
2) Next week most likely on Monday or Tuesday, Deb will have a Liver Biopsy at Piedmont Hospital so they can take tissue samples to perform necessary lab work.
3) We will then have follow up consultation with Oncologist to discuss treatment which most likely will start with Chemotherapy. We are also interested in surgical removal but too early to tell if this will be an option for Deb.
4) Ellen’s sister, Lisa is Doctor in Washington and has been awesome to Deb. She told us to send her all the test results as we get them and including the CTScan images so she can review and share with the doctors up there for additional opinion. She already knows of a surgeon that specializes in removal of tumors, etc.. in the liver, pancreas, kidney areas and just so happens to be in the Kaiser network which is ours too. THANK YOU SO MUCH LISA. YOU’RE AN ANGEL! WE LOVE YOU TOO SUSAN AND ELLEN!.
That is what we know so far and will continue to keep you updated on days to come.
Keeping the Strength and we love you all!
Rod
Tuesday, July 22, 2008
How life can change in a day
As you know, Deb has been complaining of nausea, fever, minor weight loss and just generally feeling tired all of the time.
The first results today from Deb's testing was good and bad news. I will try and explain briefly in high level so you know what we know so far.
We definitely have uncovered the root cause of the symptons that she has been experiencing in last couple months.
Unfortunately, the initial results from CT scan last Friday is showing sporadic, unknown type of lesion masses mainly on her right liver lobe and also small lesions on pancreas and one of her kidneys. Fortunately, the blood test results were for the most part positive indicating everything is functioning what appears to be normal.
Next Steps
The second test results are scheduled for tomorrow morning at 9am with the Gastro Intestinal Specialists to drill deeper into the CT scan findings and discuss next steps.
Most likely, the next step will be for Deb to immediately schedule biopsy to remove some of the lesion tissues for further lab testing.
I will keep you all posted as I know more from tests tomorrow and days to come. I will be in and out of work so here is my contact information below if you need to get hold of me.
Deb is of course upset but resting well at the house today and I have the boys taking good care of her while I am at work.
The first results today from Deb's testing was good and bad news. I will try and explain briefly in high level so you know what we know so far.
We definitely have uncovered the root cause of the symptons that she has been experiencing in last couple months.
Unfortunately, the initial results from CT scan last Friday is showing sporadic, unknown type of lesion masses mainly on her right liver lobe and also small lesions on pancreas and one of her kidneys. Fortunately, the blood test results were for the most part positive indicating everything is functioning what appears to be normal.
Next Steps
The second test results are scheduled for tomorrow morning at 9am with the Gastro Intestinal Specialists to drill deeper into the CT scan findings and discuss next steps.
Most likely, the next step will be for Deb to immediately schedule biopsy to remove some of the lesion tissues for further lab testing.
I will keep you all posted as I know more from tests tomorrow and days to come. I will be in and out of work so here is my contact information below if you need to get hold of me.
Deb is of course upset but resting well at the house today and I have the boys taking good care of her while I am at work.
Sunday, June 1, 2008
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