Before I get into the reason for the blog post let me briefly recap the last 8 months, as I have not posted anything since December 2016.
Mom started her chemotherapy on 12/16/2016 after a clean 8-week post-Whipple CT scan and a PET scan that only included one hot spot, which several (3, I believe) radiologists concurred was related to inflammation around a staple, and not related to cancer. Moms cancer was staged at IIb. It was decided to treat her with 12 rounds of Folfirinox therapy. Folfirinox includes the chemotherapy drugs: 5 FU/Leucovorin, Irinotecan, and Oxaliplatin. This therapy is usually reserved for further advanced metastatic pancreatic adenocarcinoma – cancer that has spread to other areas of the body – which mom's had not. Dr. McDaniel wanted to treat the cancer aggressively, but the regimen is one of the toughest chemo regimens around.
Mom's chemo routine was this: Go to the cancer center on Friday morning, early. Get IV chemo infusions. Stay at the cancer center usually totaled about 6-8 hours depending on how long it took to draw blood work, get results, pre-medicate, etc. At the end of each treatment, they would hook mom's port up to a portable infusion pump that would slowly infuse 5 FU over all of the rest of Friday and Saturday. On Sunday morning, even earlier, she would have to be back at the cancer center to have her port de-accessed and the infusion pump discontinued. She would also get a Neulasta shot (SubQ injection intended to maintain mom's blood counts and prevent infections associated with immunosuppression related to chemotherapy). Then it was back home and to bed.
She was usually in bed from Sunday through about Wednesday or Thursday of post-chemo week. The effects of chemo and the side effects of the Neulasta shot hit about the same time as the steroids she received on Fridays with chemo were wearing off. This caused a great deal of pain, especially in her bones (Neulasta related), Nausea and Vomiting (Wednesdays, usually) and extreme fatigue, which got worse with every treatment.
After her second treatment, we had a scare, finding out that she had an allergy to Oxaliplatin. She had an episode where her throat began to close up, while receiving the infusion, and could not talk. Luckily she was able to signal for help from her chemo chair and was able to get quick medical help. After an extremely large dose of Solumedrol and IV Benadryl and some other supportive treatments she was ok, but for the remainder of the 10 chemo treatments, she was unable to receive Oxaliplatin due to the risk of worse anaphylaxis. This made her regimen Folfiri, and not Folfirinox.
She completed the rest of her treatments with the Folfiri regimen, completing a total of 12 cycles 2 weeks apart, finishing on May 19th, 2017.
Throughout her chemo treatments she never missed a treatment; never had her WBC, ANC, H&H, BUN/Creatinine, etc restrict her from getting chemo; She never contracted a single opportunistic infection; Never became neutropenic; She was a BEAST.
She started to lose her hair when she was on the Oxaliplatin, so she and Dad both shaved their heads bald. However, when Dr. McDaniel took her off the Oxaliplatin her hair began to grow back, so she has been rocking a pixie cut for a while now. I think it looks good!
After finishing chemo on May 19th, 2017 the next step was to make sure that the chemo had worked. After attempts had been made to schedule mom for a PET scan post chemo, we were informed that her insurance company denied a PET scan because her PET scan before chemo was "clean". We were disheartened, to say the least. We all wanted to know if this worked. Her insurance did approve a CT scan of her Chest/abdomen/pelvis. A poor substitute for a PET, but we had to take what we could get. So on May 23rd, 2017 mom had a follow-up CT scan to evaluate the efficacy of chemo. After much anxiety we got the results: The scan was free of disease!!! The only thing that the Scan showed was some pseudocirrhosis of her liver that the radiologist stated was chemo induced, but no evidence of cancer. Praise the Lord!
And so we thought that this was all over and behind us.
Around late June of 2017 mom started having some pesky back pain in her left flank. Sometimes it radiated into her abdomen. Sometimes down into her groin or down into her left buttock. It was constant and nagging. She medicated it with pain medications she had at home, thinking that it was perhaps a pulled muscle.
A week went by and it was no better. She decided to follow up with her PCP, who worked her up
for a possible UTI. They increased her pain medication and recommended a CT if the pain did not resolve and sent her home. A couple more days went by and still no better, pain getting worse. Mom called the cancer center to follow up with Dr. McDaniel on the pain, who was unfortunately out of the office at the time. The Doctor covering for him gave mom a couple of doses of oxycontin and instructed her to take one then and one before bed and if the pain wasn't better in the morning to call back and they would bring her back into the cancer center. Mom did as instructed, pain still not better. When she called back in the next morning the NP ordered an MRI of her abdomen, but they said it would take 48 hours to get a pre-cert for her insurance. Dad, at this point, is completely fed up with seeing mom in pain and having to wait for things and decides to take off from work and goes home to get her and take her to the ER. This is July 6th, 2017. At the ER she has another CT of her Abd/Chest/Pelvis. The results of this CT are actually BETTER than the CT that was done in May. Time off from the chemo has allowed her liver to heal. The pseudocirrhosis that was there in May has almost resolved. There is nothing on the CT that is concerning and everything looks clear and clean. Nothing to explain away mom's pain. Mom is discharged from the ER with instructions to come back if it doesn't get any better in a week.
Meanwhile, the cancer center is still getting the pre-cert for her MRI, in the dark that mom has gone to the ER. We all counseled mom to go ahead and have the MRI, especially if insurance is offering (we have seen how fickle they are). They did the MRI on July 10th, 2017, and found a suspicious enlarged lymph node in mom's abdomen. Dr. McDaniel ordered a PET scan as a follow-up, which the insurance thankfully approved this time (sarcasm). PET Scan was done the next morning July 11th, 2017 at 6:30 in the morning. The results of which were not as we had hoped. The radiologist found 3 PET avid lymph nodes, 2 in mom's abdomen, one higher up near her diaphragm. An appointment was set to see Dr. McDaniel the following morning at 9:30 am. Mom, Dad, Kailey and I were all present.
Dr. McDaniel was very frank in our conversation stating that these findings were extremely concerning. It would appear that cancer was back, though we could not know that for sure without a biopsy. The thing that made that difficult is that two of the nodes are inaccessible and only one of the nodes has the possibility of being biopsied. The window for a biopsy needle, says Dr. McDaniel showing us with his index finger and thumb, is only about a centimeter wide and is deep in her abdomen. There is a high risk of hitting her kidneys or aorta and causing major or even life-threatening bleeding. A biopsy is not on the table. He proceeded to tell us that also because of the location of the nodes and the close proximity to her Aorta (the body's main and largest blood vessel) that the nodes were not resectable (surgically removable) and that they were also not candidates for radiation.
Dr. McDaniel gave us 3 options: 1) Do nothing, watch and wait and repeat a scan in a few months, 2) Start mom on oral chemo called Xeloda, which is oral 5 FU – one of the IV drugs she was on before, 3) Start mom on IV Chemo again with Gemzar and Abraxane. Dr. McDaniel was frank that since the cancer had recurred, there was a low probability that it would ever go away no matter what route or approach we took. He stated that in 80% of pancreatic cancer cases that are treated with a Whipple resection there will be a recurrence. He also stated that we were lucky that mom was able to have her Whipple in the first place, stating that if the surgeon had known that she was node positive in the first place that they probably would not have even operated in the first place... To say the least, we were all deflated. Mom chose to go home on oral Xeloda, not wanting to do nothing, but not wanting to go back on IV chemotherapy just yet either. We left the cancer center all feeling like our hope had been sucked away from us.
Later that night, mom got a call from Dr. McDaniel. Apparently, he had mom's case on the brain and stated that he was reviewing her films one more time and had called a colleague of his to get a second opinion. This colleague, Dr. Whitley, is a radiation oncologist at the cancer center in Montgomery. According to Dr. McDaniel, after a lengthy conversation with Dr. Whitley, it was determined that mom's recurrence could actually be potentially radiated. Dr. Whitley was also of the opinion, unlike everyone else we had talked to, that the nodes were the culprit behind mom's back pain, and that radiation therapy could potentially alleviate that pain. This came as great news and was even just a little encouraging. The appointment was set up with Dr. Whitley for July 13th, 2017.
The next morning Mom and I went to the appointment for the radiation consultation. Dr. Whitley went patiently through Mom's PET scan with us, taking us layer by layer through the scan and node by node. There was good news and bad news. The good news was that he did think that the nodes with the source of Mom's pain. He said that in a majority of pancreatic cancer recurrences of this kind the nodes press on a nerve plexus at the surgical site and the patient will present with horrible back pain. More good news was that he thought that all three nodes, the pancreatic bed (surgical area), and an area around where they took out the tumor were able to be radiated. The bad news: According to Dr. Whitley, the node that was farther north near Mom's diaphragm was actually considered a chest node and not an abdominal node. This meant that it was no longer considered regional disease but metastatic. He caveated this, however, by saying that technically it was only a matter of about 3cm. He said if the node in Mom's chest was 3cm lower, her recurrence would still be considered regional.
Now, why is that significant? He said that he would be much more hopeful if the disease/cancer was still regional, however since it had spread and was technically metastatic that could possibly lower the efficacy of treatment with radiation. For the radiation, she will still be taking oral Xeloda, however, the dose is greatly reduced to work with the radiation. Since radiation is targeted therapy and not systemic therapy (like chemo) and the cancer has technically become metastatic, there is the possibility that while we are trying to kill this recurrence with radiation that more cancer could crop up somewhere else in the meantime, because we are not treating the whole body, just a specific area. However, this is just a risk we have to take, and a hope we have to have. When it is all said and done, in the course of one day hope was taken away and then a sliver of it was given back, and while there is any hope at all, we must cling to it.
Mom is set to start Radiation on July 24th, 2017. She will go for 30 treatments, Monday through Friday, for 6 weeks. After her treatments are over we will have to wait for 2-3 months to scan her again (PET) to see if the radiation worked, because recent radiation will set off a PET and make it look like cancer is everywhere.
Now comes the time where I ask for prayers. The more of this broken world I get to see, and especially this last year, my prayer life has really been challenged. Does it matter? Does God really listen? Does he care, and if so what about? I'll be honest – I wrote this big long huge thing below what I'm currently typing detailing what I think is important on the topic, but this is not the time or place. So this is what I know and what it is all boiled down to: EVERYTHING boils down to Jesus. We all too often look at the world through worldly eyes and not through the Spirit's eyes. Often times, we still pray with our human minds and not with the Spirit's guidance.
So I ask all of you to really spend a moment and pray with your spirit and with THE Spirit for my family. Do I ask that you pray for earthly healing for Mom? By all means! But I pray that you request it of God as Jesus made His requests in the Garden of Gethsemane, saying, "Lord, if you are willing". Because we all know He can. Sometimes the answer is yes, and sometimes the answer is no. But regardless, Mom will be victorious, because HE is victorious! We plead like the psalmist, "Let me live that I may praise you" (Psalm 119:175) with the promise that, if not, we may say with one accord, "Where O death is your victory? Where O death is your sting?" (1 Corinthians 15:55)
I ask that you pray that our family gets to take advantage of as much quality time as possible in the coming months. Hopefully in the coming years! Life is short, time is fleeting. Spend time with you and yours as well, for we never will know when time is up.
Collectively:
- Where there is Anxiety – Quell it.
- Where there is Fear/Doubt - It will be driven away
- That "The Lord would bless us and keep us, the He would make His face shine upon us, that He would be gracious unto us and give us peace" (Numbers 6:24-26)
For Mom:
- Pain relief is much needed right now. It is affecting her daily life and ability to do things.
- Nausea and Vomiting as a result of pain and/or improper pain management regimen – please pray that pain management plan begins to become effective.
- Emotional, Mental, and Spiritual health in dealing with recurrence of cancer we were hoping was gone. Also having a hard time having to resign from a job that she loved fiercely. Mom has been an RN for 30 years. A lot of her identity was tied up in that title and in helping people. Now not being able to do that has left an empty spot.
For Dad:
- It's been a roller coaster of emotions. Pray that God grants him a "peace that surpasses all understanding" (Philippians 4:7). Pray for his mental, physical and emotional health in dealing with an illness that has affected the 30-year love of his life every day since October 2016.
For Kailey:
- It has been a rough last couple years for Kailey as a lot of you know. She is getting married in November and this news comes as another stressor to the bride-to-be. Kailey and Mom are extremely close. Pray for a seamless and beautiful wedding, that she and Austin can enjoy with Mom in exceptional health.
For Sheila:
- She is there for all of us in some capacity at all times. I know it gets draining, especially keeping me level headed and sane and being a new mother. She is my rock, and for that reason alone I ask that you pray for her.
For Austin:
- I ask that you pray for the groom-to-be, because dealing with a situation such as this would be a tall order for a veteran husband, much less entering a marriage having to help your new bride through what could be a very tough first few years. Prayers for guidance, leadership, love, patience, and empathy for my brother to be and my brother in Christ.
For Me:
- It is both a blessing and a horrible curse to know too much. Prayers that I will know in the months and years to come when to let my medical side out and be inquisitive/intellectual, and when to just be a son.
Thank you to those of you who care enough to finish reading such a long post. May God bless you and yours abundantly.
In Christ,
Luke Barkley
She started to lose her hair when she was on the Oxaliplatin, so she and Dad both shaved their heads bald. However, when Dr. McDaniel took her off the Oxaliplatin her hair began to grow back, so she has been rocking a pixie cut for a while now. I think it looks good!
After finishing chemo on May 19th, 2017 the next step was to make sure that the chemo had worked. After attempts had been made to schedule mom for a PET scan post chemo, we were informed that her insurance company denied a PET scan because her PET scan before chemo was "clean". We were disheartened, to say the least. We all wanted to know if this worked. Her insurance did approve a CT scan of her Chest/abdomen/pelvis. A poor substitute for a PET, but we had to take what we could get. So on May 23rd, 2017 mom had a follow-up CT scan to evaluate the efficacy of chemo. After much anxiety we got the results: The scan was free of disease!!! The only thing that the Scan showed was some pseudocirrhosis of her liver that the radiologist stated was chemo induced, but no evidence of cancer. Praise the Lord!
And so we thought that this was all over and behind us.
Around late June of 2017 mom started having some pesky back pain in her left flank. Sometimes it radiated into her abdomen. Sometimes down into her groin or down into her left buttock. It was constant and nagging. She medicated it with pain medications she had at home, thinking that it was perhaps a pulled muscle.
A week went by and it was no better. She decided to follow up with her PCP, who worked her up
for a possible UTI. They increased her pain medication and recommended a CT if the pain did not resolve and sent her home. A couple more days went by and still no better, pain getting worse. Mom called the cancer center to follow up with Dr. McDaniel on the pain, who was unfortunately out of the office at the time. The Doctor covering for him gave mom a couple of doses of oxycontin and instructed her to take one then and one before bed and if the pain wasn't better in the morning to call back and they would bring her back into the cancer center. Mom did as instructed, pain still not better. When she called back in the next morning the NP ordered an MRI of her abdomen, but they said it would take 48 hours to get a pre-cert for her insurance. Dad, at this point, is completely fed up with seeing mom in pain and having to wait for things and decides to take off from work and goes home to get her and take her to the ER. This is July 6th, 2017. At the ER she has another CT of her Abd/Chest/Pelvis. The results of this CT are actually BETTER than the CT that was done in May. Time off from the chemo has allowed her liver to heal. The pseudocirrhosis that was there in May has almost resolved. There is nothing on the CT that is concerning and everything looks clear and clean. Nothing to explain away mom's pain. Mom is discharged from the ER with instructions to come back if it doesn't get any better in a week.
Meanwhile, the cancer center is still getting the pre-cert for her MRI, in the dark that mom has gone to the ER. We all counseled mom to go ahead and have the MRI, especially if insurance is offering (we have seen how fickle they are). They did the MRI on July 10th, 2017, and found a suspicious enlarged lymph node in mom's abdomen. Dr. McDaniel ordered a PET scan as a follow-up, which the insurance thankfully approved this time (sarcasm). PET Scan was done the next morning July 11th, 2017 at 6:30 in the morning. The results of which were not as we had hoped. The radiologist found 3 PET avid lymph nodes, 2 in mom's abdomen, one higher up near her diaphragm. An appointment was set to see Dr. McDaniel the following morning at 9:30 am. Mom, Dad, Kailey and I were all present.
Dr. McDaniel was very frank in our conversation stating that these findings were extremely concerning. It would appear that cancer was back, though we could not know that for sure without a biopsy. The thing that made that difficult is that two of the nodes are inaccessible and only one of the nodes has the possibility of being biopsied. The window for a biopsy needle, says Dr. McDaniel showing us with his index finger and thumb, is only about a centimeter wide and is deep in her abdomen. There is a high risk of hitting her kidneys or aorta and causing major or even life-threatening bleeding. A biopsy is not on the table. He proceeded to tell us that also because of the location of the nodes and the close proximity to her Aorta (the body's main and largest blood vessel) that the nodes were not resectable (surgically removable) and that they were also not candidates for radiation.
Dr. McDaniel gave us 3 options: 1) Do nothing, watch and wait and repeat a scan in a few months, 2) Start mom on oral chemo called Xeloda, which is oral 5 FU – one of the IV drugs she was on before, 3) Start mom on IV Chemo again with Gemzar and Abraxane. Dr. McDaniel was frank that since the cancer had recurred, there was a low probability that it would ever go away no matter what route or approach we took. He stated that in 80% of pancreatic cancer cases that are treated with a Whipple resection there will be a recurrence. He also stated that we were lucky that mom was able to have her Whipple in the first place, stating that if the surgeon had known that she was node positive in the first place that they probably would not have even operated in the first place... To say the least, we were all deflated. Mom chose to go home on oral Xeloda, not wanting to do nothing, but not wanting to go back on IV chemotherapy just yet either. We left the cancer center all feeling like our hope had been sucked away from us.
Later that night, mom got a call from Dr. McDaniel. Apparently, he had mom's case on the brain and stated that he was reviewing her films one more time and had called a colleague of his to get a second opinion. This colleague, Dr. Whitley, is a radiation oncologist at the cancer center in Montgomery. According to Dr. McDaniel, after a lengthy conversation with Dr. Whitley, it was determined that mom's recurrence could actually be potentially radiated. Dr. Whitley was also of the opinion, unlike everyone else we had talked to, that the nodes were the culprit behind mom's back pain, and that radiation therapy could potentially alleviate that pain. This came as great news and was even just a little encouraging. The appointment was set up with Dr. Whitley for July 13th, 2017.
The next morning Mom and I went to the appointment for the radiation consultation. Dr. Whitley went patiently through Mom's PET scan with us, taking us layer by layer through the scan and node by node. There was good news and bad news. The good news was that he did think that the nodes with the source of Mom's pain. He said that in a majority of pancreatic cancer recurrences of this kind the nodes press on a nerve plexus at the surgical site and the patient will present with horrible back pain. More good news was that he thought that all three nodes, the pancreatic bed (surgical area), and an area around where they took out the tumor were able to be radiated. The bad news: According to Dr. Whitley, the node that was farther north near Mom's diaphragm was actually considered a chest node and not an abdominal node. This meant that it was no longer considered regional disease but metastatic. He caveated this, however, by saying that technically it was only a matter of about 3cm. He said if the node in Mom's chest was 3cm lower, her recurrence would still be considered regional.
Now, why is that significant? He said that he would be much more hopeful if the disease/cancer was still regional, however since it had spread and was technically metastatic that could possibly lower the efficacy of treatment with radiation. For the radiation, she will still be taking oral Xeloda, however, the dose is greatly reduced to work with the radiation. Since radiation is targeted therapy and not systemic therapy (like chemo) and the cancer has technically become metastatic, there is the possibility that while we are trying to kill this recurrence with radiation that more cancer could crop up somewhere else in the meantime, because we are not treating the whole body, just a specific area. However, this is just a risk we have to take, and a hope we have to have. When it is all said and done, in the course of one day hope was taken away and then a sliver of it was given back, and while there is any hope at all, we must cling to it.
Mom is set to start Radiation on July 24th, 2017. She will go for 30 treatments, Monday through Friday, for 6 weeks. After her treatments are over we will have to wait for 2-3 months to scan her again (PET) to see if the radiation worked, because recent radiation will set off a PET and make it look like cancer is everywhere.
Now comes the time where I ask for prayers. The more of this broken world I get to see, and especially this last year, my prayer life has really been challenged. Does it matter? Does God really listen? Does he care, and if so what about? I'll be honest – I wrote this big long huge thing below what I'm currently typing detailing what I think is important on the topic, but this is not the time or place. So this is what I know and what it is all boiled down to: EVERYTHING boils down to Jesus. We all too often look at the world through worldly eyes and not through the Spirit's eyes. Often times, we still pray with our human minds and not with the Spirit's guidance.
So I ask all of you to really spend a moment and pray with your spirit and with THE Spirit for my family. Do I ask that you pray for earthly healing for Mom? By all means! But I pray that you request it of God as Jesus made His requests in the Garden of Gethsemane, saying, "Lord, if you are willing". Because we all know He can. Sometimes the answer is yes, and sometimes the answer is no. But regardless, Mom will be victorious, because HE is victorious! We plead like the psalmist, "Let me live that I may praise you" (Psalm 119:175) with the promise that, if not, we may say with one accord, "Where O death is your victory? Where O death is your sting?" (1 Corinthians 15:55)
I ask that you pray that our family gets to take advantage of as much quality time as possible in the coming months. Hopefully in the coming years! Life is short, time is fleeting. Spend time with you and yours as well, for we never will know when time is up.
Collectively:
- Where there is Anxiety – Quell it.
- Where there is Fear/Doubt - It will be driven away
- That "The Lord would bless us and keep us, the He would make His face shine upon us, that He would be gracious unto us and give us peace" (Numbers 6:24-26)
For Mom:
- Pain relief is much needed right now. It is affecting her daily life and ability to do things.
- Nausea and Vomiting as a result of pain and/or improper pain management regimen – please pray that pain management plan begins to become effective.
- Emotional, Mental, and Spiritual health in dealing with recurrence of cancer we were hoping was gone. Also having a hard time having to resign from a job that she loved fiercely. Mom has been an RN for 30 years. A lot of her identity was tied up in that title and in helping people. Now not being able to do that has left an empty spot.
For Dad:
- It's been a roller coaster of emotions. Pray that God grants him a "peace that surpasses all understanding" (Philippians 4:7). Pray for his mental, physical and emotional health in dealing with an illness that has affected the 30-year love of his life every day since October 2016.
For Kailey:
- It has been a rough last couple years for Kailey as a lot of you know. She is getting married in November and this news comes as another stressor to the bride-to-be. Kailey and Mom are extremely close. Pray for a seamless and beautiful wedding, that she and Austin can enjoy with Mom in exceptional health.
For Sheila:
- She is there for all of us in some capacity at all times. I know it gets draining, especially keeping me level headed and sane and being a new mother. She is my rock, and for that reason alone I ask that you pray for her.
For Austin:
- I ask that you pray for the groom-to-be, because dealing with a situation such as this would be a tall order for a veteran husband, much less entering a marriage having to help your new bride through what could be a very tough first few years. Prayers for guidance, leadership, love, patience, and empathy for my brother to be and my brother in Christ.
For Me:
- It is both a blessing and a horrible curse to know too much. Prayers that I will know in the months and years to come when to let my medical side out and be inquisitive/intellectual, and when to just be a son.
Thank you to those of you who care enough to finish reading such a long post. May God bless you and yours abundantly.
In Christ,
Luke Barkley
