Last night I got the very best Christmas gift of my entire lifetime. Lance Borders of the Palmetto Health Cath Lab came up with the idea of coming by our house and singing Christmas carols. This plan was expanded to include members of Hope Lutheran Church, and folks from the South Carolina Heart Center, Steve Longaker from Biotroniks and Jerry Reed from Ela. When I was told that I should take a look outside I saw a sea of lit candles and the familiar faces of my most beloved freinds. The group sang for nearly half and hour while Cindy, Lydia, Austin and I stood and enjoyed the music. Afterwards, there were lots of hugs, and then the gifts began to pour into our living room. I am still amazed at the expression of love that has been shown to me and my family. God bless each and every one of you!
TTFN
Mack
Friday, December 22, 2006
Tuesday, December 19, 2006
An even better day!
I have been employed by Palmetto Health Baptist for 18 years now. I have no plans of ever moving from my post as I feel that I a part of the family there. The truest expression of this familial bond was made manifest today by Marty Bridges, CEO of Palmetto Health Baptist, who read my blog and noted that I needed five drainage bags. Marty was able to get these bags for me. I am deeply thankful not only for this gift, but for everything that everyone at Palmetto Health Baptist has done and continues to do for me and my family.
My chemo infussion is just two hours away and with this news I feel supercharged, knowing that the prayers of so many go with me. I am blessed beyond my ability to recognize my blessings. Thank you everyone for everything, and I praise God for all of you.
TTFN
Mack
My chemo infussion is just two hours away and with this news I feel supercharged, knowing that the prayers of so many go with me. I am blessed beyond my ability to recognize my blessings. Thank you everyone for everything, and I praise God for all of you.
TTFN
Mack
Monday, December 18, 2006
A good day
Today has been a very good day. I awoke without pain and was able to attend Lydia's Pre-school Christmas show. Afterwards, I got a haircut. In the mail today were instructions from MUSC about the appointment for the ERCP that will be done on January 2, 2007.
Cindy was able to make some headway in obtaining more of the Sandostatin. A month's supply will arrive tomorrow at 8:00am. Tomorrow while I am getting my second infussion of Gemzar Cindy will go to the Hospital and round up the image CDs from Radiology of all of my CT scans and MRIs. She will then run down to SPD and get another TRU-CLOSE drainage bag. We found out that my insurance will not pay any part of the cost of these bags. I can buy them from the Hospital for about $77/each. I'll need them until the drainage is fixed at my visit to MUSC in January. One bag lasts for about 3 days. Therefore, I will need about 5 bags.
David stopped by this afternoon and told me about the Ionosoft meeting with a company we are in negotiations with for our medical reporting software. It all sounds very exciting! We have very much to look forward to and I am feeling charged by it all.
Well that caps my day today.
TTFN
Mack
Cindy was able to make some headway in obtaining more of the Sandostatin. A month's supply will arrive tomorrow at 8:00am. Tomorrow while I am getting my second infussion of Gemzar Cindy will go to the Hospital and round up the image CDs from Radiology of all of my CT scans and MRIs. She will then run down to SPD and get another TRU-CLOSE drainage bag. We found out that my insurance will not pay any part of the cost of these bags. I can buy them from the Hospital for about $77/each. I'll need them until the drainage is fixed at my visit to MUSC in January. One bag lasts for about 3 days. Therefore, I will need about 5 bags.
David stopped by this afternoon and told me about the Ionosoft meeting with a company we are in negotiations with for our medical reporting software. It all sounds very exciting! We have very much to look forward to and I am feeling charged by it all.
Well that caps my day today.
TTFN
Mack
Friday, December 15, 2006
Fatique
They said it would happen, but I didn't give it much thought. The Gemzar surely does cause profound fatique. Yesterday I was hardly able to move, and today I was only able to sit on my front porch and walk the driveway for a short while, then napped.
I have also had terrible constipation. I am now taking two doses of MOM daily and eating two servings of fresh fruit to stay regular.
The fatique has made me feel a little glum, too. I hope that at the next dose of Gemzar that these symptoms do not worsen, and that I "get use" to them.
We heard from MUSC today and I have an appointment for the ERCP on January 2nd. This should take care of the leaking psuedocyst in the pancreas that is causing the drainage intomy abdomen. Once we have confirmed that the drainage catheter can be removed (Hurrah!).
TTFN
Mack
I have also had terrible constipation. I am now taking two doses of MOM daily and eating two servings of fresh fruit to stay regular.
The fatique has made me feel a little glum, too. I hope that at the next dose of Gemzar that these symptoms do not worsen, and that I "get use" to them.
We heard from MUSC today and I have an appointment for the ERCP on January 2nd. This should take care of the leaking psuedocyst in the pancreas that is causing the drainage intomy abdomen. Once we have confirmed that the drainage catheter can be removed (Hurrah!).
TTFN
Mack
Wednesday, December 13, 2006
The day after Chemo
In my last post I told you that my pain began in the morning and lessened after getting to SCOA for IV pain medication and my first dose of Gemzar. This morning I awoke feeling great, but then begain having pain again. So far, I have been able to control it at home.
One of the side effects of Gemzar is a breakdown of the tissues in the mouth. I don't know yet if this is it, but my mouth is more sensitive today than before. I am forcing liquids today and added Gatorade. Besides the ever present pain I think today is a good day. I would like to have a BM, but so far nothing.
I have Caremark drug coverage. I am only able to get limited supplies of my Sandostatin through my local pharmacy and get bulk through the mail with Caremark. I spoke with their agent today and will be able to refill my script after Monday. This means that my supplies will run out again before my bulk order arrives. Also, Sandostatin is VERY expensive! Two 200 mcg/5cc bottles cost $130.00 This is enough for ten does, or just over three days. And I have a TRU-CLOSE vacuum drainage bag that a box of ten costs $900. Each bag lasts about 4 days. I hope to have the pseudocyst that is causing the leak to be treated at MUSC soon and get rid of the bag and the Sandostatin in one fell swoop.
That's about all for today.
TTFN
Mack
One of the side effects of Gemzar is a breakdown of the tissues in the mouth. I don't know yet if this is it, but my mouth is more sensitive today than before. I am forcing liquids today and added Gatorade. Besides the ever present pain I think today is a good day. I would like to have a BM, but so far nothing.
I have Caremark drug coverage. I am only able to get limited supplies of my Sandostatin through my local pharmacy and get bulk through the mail with Caremark. I spoke with their agent today and will be able to refill my script after Monday. This means that my supplies will run out again before my bulk order arrives. Also, Sandostatin is VERY expensive! Two 200 mcg/5cc bottles cost $130.00 This is enough for ten does, or just over three days. And I have a TRU-CLOSE vacuum drainage bag that a box of ten costs $900. Each bag lasts about 4 days. I hope to have the pseudocyst that is causing the leak to be treated at MUSC soon and get rid of the bag and the Sandostatin in one fell swoop.
That's about all for today.
TTFN
Mack
Tuesday, December 12, 2006
First day of Chemo
Today was to be my first day of Chemo. I was awakened this morning by intense pain. I got up and took the Dilaudid. This did nothing to lessen the pain, so I took an Oxycodone. I was able to fall back asleep for about an hour, but was once again wakened by intense pain. Next, I too a nepragan because I had a bit of nausea along with the pain. Again, no lessening of the pain. I took another Oxycodone and called my wife and she came back home from work and called the Oncologist. They said to bring me right in and they would get me all fixed up. As er left I took another Dilaudid.
The folks at South Carolina Oncologists Associate in Columbia, SC are truly that best. I was at once sent to the infussion section and an I.V. of saline was started. Next, an injection of 4mg of Dilaudid was administered. That settled all but the most intensive spasm pain. At this time Cindy, my wife, remembered that the last dose of Sandostatin was self adminstered at 11:00pm and the time now was noon; a gap of over four hours beyond that time I should have had another dose. Cindy went to the pharmacy at SCOA and brought me a dose which I gave myself at 1:15pm. I didn't have another spasm the rest of the day.
The Gemzar was given to me around 1:30pm and I had no immediate adverse reactions, and of 9:15pm all remains well.
How pancreatic cancer has impacted my life
Before being diagnosed, I led a very active life raising two sets of kids and being very active at Hope Lutheran Church in Irmo, SC. Lydia, our four year old is a bouncing bundle of raw energy who enjoyed being chased around our backyard by her Dad, and Austin our 9 month old is likewise energetic and loved being held aloft in simulated flight. All of these are now on hold for an unknown length of time. I am confident that I will regain strength that will allow me to once again participate in these and other fatherly persuits, but for now I am just a spectator. This does make me feel detached and helpless. My son and I are part owners in a software company called Ionosoft. Together with Dr. Rodney Harrison we have created a one of a kind medical medical reporting software. We are negotiating with major worldwide vendors of medical hard and software and look forward to bringing in a few hundred thousand dollars in our first year of business. Due to my recent illness I have had to back away from direct involement in the company and get updates from my son and from Dr. Harrison. I look forward to being able to return to a more deeply involved status. I am the Imaging Manager of the Cardiac Cath Lab, EKG and EEG departments of the Palmetto Health Baptist Medical Center in Columba, SC. I have been on extened medical leave and FMLA with Soft Term Diability since November 7th. I look forward to returning to my work and those who love me at Palmetto Health Baptist.
The relationship with my wife has also been affected. We share the same bed, but only for sleep as my health is not returned for anything else. Cindy's life of working outside the home and caring for her family was already strained and now is pushed to the point of fracture. I pray for her to have continued strength and keep her sense of humor. Cindy is a fantastic wife, and I love her more than words can say.
Well, that's some of my observations as I battle pancreatic cancer. I hope that those others out there who are locked in this or a simular battle will leave me their posts as your observations will undoubtedly be a freat value to me and others. If you are part of my support / prayer group I also welcome your words of encouragement and reminders of our LORD'S gospel grace and peace. These will also be helpful to my battle partners out there. With God's help we can make it through these tough times.
TTFN
Mack
The folks at South Carolina Oncologists Associate in Columbia, SC are truly that best. I was at once sent to the infussion section and an I.V. of saline was started. Next, an injection of 4mg of Dilaudid was administered. That settled all but the most intensive spasm pain. At this time Cindy, my wife, remembered that the last dose of Sandostatin was self adminstered at 11:00pm and the time now was noon; a gap of over four hours beyond that time I should have had another dose. Cindy went to the pharmacy at SCOA and brought me a dose which I gave myself at 1:15pm. I didn't have another spasm the rest of the day.
The Gemzar was given to me around 1:30pm and I had no immediate adverse reactions, and of 9:15pm all remains well.
How pancreatic cancer has impacted my life
Before being diagnosed, I led a very active life raising two sets of kids and being very active at Hope Lutheran Church in Irmo, SC. Lydia, our four year old is a bouncing bundle of raw energy who enjoyed being chased around our backyard by her Dad, and Austin our 9 month old is likewise energetic and loved being held aloft in simulated flight. All of these are now on hold for an unknown length of time. I am confident that I will regain strength that will allow me to once again participate in these and other fatherly persuits, but for now I am just a spectator. This does make me feel detached and helpless. My son and I are part owners in a software company called Ionosoft. Together with Dr. Rodney Harrison we have created a one of a kind medical medical reporting software. We are negotiating with major worldwide vendors of medical hard and software and look forward to bringing in a few hundred thousand dollars in our first year of business. Due to my recent illness I have had to back away from direct involement in the company and get updates from my son and from Dr. Harrison. I look forward to being able to return to a more deeply involved status. I am the Imaging Manager of the Cardiac Cath Lab, EKG and EEG departments of the Palmetto Health Baptist Medical Center in Columba, SC. I have been on extened medical leave and FMLA with Soft Term Diability since November 7th. I look forward to returning to my work and those who love me at Palmetto Health Baptist.
The relationship with my wife has also been affected. We share the same bed, but only for sleep as my health is not returned for anything else. Cindy's life of working outside the home and caring for her family was already strained and now is pushed to the point of fracture. I pray for her to have continued strength and keep her sense of humor. Cindy is a fantastic wife, and I love her more than words can say.
Well, that's some of my observations as I battle pancreatic cancer. I hope that those others out there who are locked in this or a simular battle will leave me their posts as your observations will undoubtedly be a freat value to me and others. If you are part of my support / prayer group I also welcome your words of encouragement and reminders of our LORD'S gospel grace and peace. These will also be helpful to my battle partners out there. With God's help we can make it through these tough times.
TTFN
Mack
Monday, December 11, 2006
Life with pancreatic cancer
Hi folks! To catch up with where I am in this journey let me first post the history of how I have now arrived at the beginning of my Chemotherapy.
In early July of 2006 I began having pain as intense a a kidney stone, but in the front of my abdomen and wrapping around both sides. My first episode of pain lasted for two hours and I didn't have another painful episode for two months. During this time I noticed my stool had become kakey colored and floated. I reported my symptoms to one of the nurses who said it sounded like I had obstructive gall bladder disease. I went immediately to see my Doctor who ordered a CT scan. Nothing was seen on the CT, so I had an ultrasound which did show bile sludge and a narrowing of the distal duct. Next came a month of lab tests for hepatitis A,B & C Epstien - Barr and CMV. All normal. All the while, my Bilirubin rose to 16. My GI doctor then suggested a liver biopsy to which I said "No!" I didn't want to poke a hole into something I'm trying to get well. He then suggested an MRI. This showed that the papllia of the Ampula of Vater had closed off the Sphyncter of Odi resulting in an obstruction. I then had an ERCP to place a stent to resume flow. Immediately I saw improvement. Within a week my Bilirubin had returned to 1.6. The brushings didn't show any cancer and I began thinking now everything was OK and that with time the then believed infection would heal and the stent could be removed. However, each time the stent was removed my symptoms returned. During one of the ERCPs an actual biopsy was done which eventually did demonstrate cancer.
Then came the attempted Whipple surgery. During the surgery it became clear that the head of the pancreas was so fibrotic that it could not be lifted away from the stomach and that the stomach could be lifted from the abdomenal cavity. Now instead of the Whipple I was to have a gall bladder removed and the duct revised. That sounds alot easier than my experience.
After my surgery I had a lot of problems with nausea and vomiting, abdomenal pain and general weakness. Eventually I regained my appetite and thought that I was on the road to recovery. The unseen problem was that my pancreas was leaking into my abdomen causing my stomach to become twisted and lifted up. This caused extreme nausea and a failure to thrive. I had to return to the hospital.
Another CT was done whiched showed a large pocket of fluid had built up. The next day a drain was inserted and in the first 24 hours an entire liter of fluid was drained off. My surgery was done on November 8th and as of December 11th the leaking continues and I fill a one liter bag every three days. Another ERCP is pending that will create a passage way from the leaking pseudocyst into my pancreatic duct and a metal stent placed to hold the distal duct open. This should resolve the issue of having a drainage bag and be the final chapter of my surgery caused complications.
I begin Chemotherapy on December 12th, 2006. We will be using Gemzar. Another drug, 5FU may also be used. My infussions will take an hour, once a week for 7 weeks. Then I get a break for a week and then three more infussions, and so on. A PET scan will be used to see the efficacy of the treatment.
I use 2mg Dilaudid every four hours to control my pain which is ever present. I also have Mepragan and Oxycodone available if needed. So far, I have needed them on rare occasions.
Bathing is my biggest challenge because of the dressing over my drain. I wash my hair in the kitchen sink and sponge bathe at the bathroom sink. I am so looking forward to getting rid of the drain I can't tell you!
Well, that is my story up to now. I will post more as I go through my Chemo, so look for continued info. If you are also fighting this cancer I look forward to reading your experiences. If you are part of my prayer / support group I can't express to you the gratitude I have for all of your prayers and acts of kindness. Especially thankful am I for the members of Hope Lutheran Church, Irmo, SC. They have formed a fund to buy diapers and formula for our 9 month old son, and a "play time" for our 4 year old daughter. They truly are angels on earth!
TTFN (Ta ta for now!)
In early July of 2006 I began having pain as intense a a kidney stone, but in the front of my abdomen and wrapping around both sides. My first episode of pain lasted for two hours and I didn't have another painful episode for two months. During this time I noticed my stool had become kakey colored and floated. I reported my symptoms to one of the nurses who said it sounded like I had obstructive gall bladder disease. I went immediately to see my Doctor who ordered a CT scan. Nothing was seen on the CT, so I had an ultrasound which did show bile sludge and a narrowing of the distal duct. Next came a month of lab tests for hepatitis A,B & C Epstien - Barr and CMV. All normal. All the while, my Bilirubin rose to 16. My GI doctor then suggested a liver biopsy to which I said "No!" I didn't want to poke a hole into something I'm trying to get well. He then suggested an MRI. This showed that the papllia of the Ampula of Vater had closed off the Sphyncter of Odi resulting in an obstruction. I then had an ERCP to place a stent to resume flow. Immediately I saw improvement. Within a week my Bilirubin had returned to 1.6. The brushings didn't show any cancer and I began thinking now everything was OK and that with time the then believed infection would heal and the stent could be removed. However, each time the stent was removed my symptoms returned. During one of the ERCPs an actual biopsy was done which eventually did demonstrate cancer.
Then came the attempted Whipple surgery. During the surgery it became clear that the head of the pancreas was so fibrotic that it could not be lifted away from the stomach and that the stomach could be lifted from the abdomenal cavity. Now instead of the Whipple I was to have a gall bladder removed and the duct revised. That sounds alot easier than my experience.
After my surgery I had a lot of problems with nausea and vomiting, abdomenal pain and general weakness. Eventually I regained my appetite and thought that I was on the road to recovery. The unseen problem was that my pancreas was leaking into my abdomen causing my stomach to become twisted and lifted up. This caused extreme nausea and a failure to thrive. I had to return to the hospital.
Another CT was done whiched showed a large pocket of fluid had built up. The next day a drain was inserted and in the first 24 hours an entire liter of fluid was drained off. My surgery was done on November 8th and as of December 11th the leaking continues and I fill a one liter bag every three days. Another ERCP is pending that will create a passage way from the leaking pseudocyst into my pancreatic duct and a metal stent placed to hold the distal duct open. This should resolve the issue of having a drainage bag and be the final chapter of my surgery caused complications.
I begin Chemotherapy on December 12th, 2006. We will be using Gemzar. Another drug, 5FU may also be used. My infussions will take an hour, once a week for 7 weeks. Then I get a break for a week and then three more infussions, and so on. A PET scan will be used to see the efficacy of the treatment.
I use 2mg Dilaudid every four hours to control my pain which is ever present. I also have Mepragan and Oxycodone available if needed. So far, I have needed them on rare occasions.
Bathing is my biggest challenge because of the dressing over my drain. I wash my hair in the kitchen sink and sponge bathe at the bathroom sink. I am so looking forward to getting rid of the drain I can't tell you!
Well, that is my story up to now. I will post more as I go through my Chemo, so look for continued info. If you are also fighting this cancer I look forward to reading your experiences. If you are part of my prayer / support group I can't express to you the gratitude I have for all of your prayers and acts of kindness. Especially thankful am I for the members of Hope Lutheran Church, Irmo, SC. They have formed a fund to buy diapers and formula for our 9 month old son, and a "play time" for our 4 year old daughter. They truly are angels on earth!
TTFN (Ta ta for now!)
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