The Begeske Battle
Donation protected
For those who do not know the entire battle, I will start from the beginning, with a current status to follow:
In May 2013 Danielle was diagnosed with a stage 3-4 synovial sarcoma residing in her right inner thigh of her leg. At the time of diagnosis the tumor was the size of a 16 inch softball. The best orthopedic surgeon/oncologist works for Northwestern Memorial Hospital in Chicago, so Danielle opted to leave her job and life in Oregon, to move back to IL to seek treatment. Her 2013 treatment plan consisted of 4 - 21 day cycles of inpatient chemotherapy, to be followed by direct radiation, both to control and stop the spread of the cancer, ultimately to be surgically removed on December 10th, 2013.
Chemo was difficult, she experienced extreme nausea at times, and lost her hair completely during the 3rd cycle around the 4th of July. All in all however, in my opinion, she handled chemo like champion. Radiation followed, and unfortunately this part was very painful and difficult. We opted to move into my parents home in Custer Park, and Danielle commuted 5 times a week to Northwestern to sit on a steel table and receive direct radiation on her right inner thigh. By the 3rd week she was experiencing 3rd degree burn symptoms, and had to continue this treatment regiment from September through November. After radiation, her oncology team ( oncologist, surgeon, radiation) decided they had the cancer under control, and felt comfortable going in and removing the tumor surgically. There were no other sites of cancer in 2013 outside of her right inner thigh. On December 10th, surgery was a success! There were a few potential scenarios that could happen, but they would know until they went into surgery. 3 surgeons were involved in the surgery (orthopedic,lymphatic,vascular), with a plastic surgeon on-standby during the operation, in case they needed to do a skin graph to fill the void of the tumor in her thigh. The best outcome occurred, and they were able to shift her exterior femoral muscle from the outside of her leg, over the top of her femur, to the inside of her leg, filling the tumor gap, and eliminating the need for any additional surgeries. It was a big win!
After surgery she was on a 3 month scan and check up routine, with everything looking good for the 1st year. Moved it back to every 4 months in 2015, all scans came up clear. Every time meeting with the oncologist and surgeon, both showing confidence that they felt it was under control. 4 month scans turned into 6 month scans in 2016, all good signs it was over.
In December 2016, the radiologist reviewing her scans noticed a small 2mm nodule in her right lung. It was so small, a biopsy wasn't possible, but we increased the frequency of her scans to 3 months to monitor. 3 months later, the nodule doubled in size to 4mm. Still it is very small, so they kept monitoring it in 3 month increments. 3 months later it was 6mm. In December 2017, never performing a biopsy, Danielle under went a video-assisted thoracoscopic wedge resection, to remove the 9mm nodule (VATS). Procedure went great! Biopsy showed positive and consistent with the original sarcoma. Margins were clean, they got everything they went in for, and again the team of doctors felt very confident this was the last we would see of this sarcoma. The recurrence itself was fairly rare, but if it was to come back it would appear in the lung as it did. Because there were not multiple nodules, it was not in both lungs, they felt confident this was an isolated incident, and that this removal should be the last. We went back on 3 month scans/checkup schedule.
In April 2019 another mass appeared in her lung, this time it was in her left lung. Again it appeared isolated, and the oncologist and thoracic surgeon felt good about going in and performing another VATS to resect the tumor, prior to biopsy. Procedure went great again! Biopsy showed positive and consistent with original sarcoma, and again, while it was rare to come back twice, because it was again an isolated incident, we were to believe this should be the last of it.
Current Situation:
About a month ago, on labor day weekend 2019, Danielle was experiencing shortness of breath and chest pains. Never during her cancer journey had she ever really experienced pain or shortness of breath of this significance, so we moved up her scans just to be safe. The CAT scan revealed a moderate pleural effusion and a mass-like enhancement in the posterior basilar pleura, the largest portion measuring 69mm x 28mm. In English, that means fluid was building up in the lining that protects her left lung, in addition to a tumor on her lung as well. They scheduled a biopsy for September 12th, and while they were in there doing the biopsy, they were to drain her effusion. They pulled out 1 liter of water out of her lung lining, and it offered her immediate relief. That relief lasted for 24 hours, only for her to start experience shortness of breath again. The effusion was most likely back.
We met with her oncologist on Monday September 16th, he made room for her on his schedule on a day he typically does not see established patients. This was a meeting to review the biopsy results, and discuss treatment. We were hopeful that surgery would be an option for her, but unfortunately that was not the case. Dr. Agulnik(oncologist) confirmed cancer consistent with the sarcoma again and informed us that he felt chemo was the only option, he wanted her to start it immediately as inpatient, the same regiment as 2013. We asked why?!? We asked can we just do surgery again? He said that the fluid that is building in her lung lining is filled with cancer cells, and that the primary way to remove that is through chemo. Also, he said there is not a thoracic surgeon out there that would agree to cut her open again, being the 3rd metastasis of her sarcoma, and especially only 4 months after her last recurrence.
Our hearts were broken. We just started feeling really good about where life had taken us after 6 years of turbulence. We recently moved back to where we originally met in Southern Illinois to Carbondale area, Carterville to be exact. Danielle is 2 months away from finishing her degree program in Public Health, and landed a great internship in Community Benefits at SIH (Southern Illinois Healthcare). I landed a great job with SIH working in telehealth, a field I am very passionate about.
Hearing his treatment plan felt like we had to start all over again, it was a truly demoralizing feeling. He wanted to attack it with 5 - 21 day cycles of chemotherapy, inpatient at Northwestern in Chicago.
On Thursday September 19th, Danielle underwent another thoracentesis @ Northwestern to remove the fluid from her lung effusion, after that she underwent a full body PET scan to examine the entire body for other possible cancer spots. PET scan came back negative! And this time, the draining of her lung held so much better, her breathing has been significantly better and has not needed to repeat. We went back home, where she underwent an echo-cardiogram to assess her heart strength, to make sure she could handle the chemo. Echo came back good, we were good to go.
We had hoped we could do the chemotherapy at SIH, at the Cancer Institute 2 miles from our home, but after meeting with their oncologist, the intensity of her chemo was something that they were not staffed to handle currently. However, she did establish care with Dr. Popalzai at SIH, and we will be able to have a local resource for supplemental care as needed during this process.
The plan is to travel to Chicago every 21 days, for 3-4 days of inpatient chemotherapy, for a total of 5 cycles. We start on October 4th in Chicago.
Details of everything is a lot for us to provide on an individual basis, as I hope you can understand. As Danielle's battle progresses, we will continue to update here on the Caring Bridge platform.
Please Please Please continue to send well wishes and prayer calls and texts to us both, this is not an effort to stop those by any means, we just really want Caring Bridge to be the hub for for details of her care and progress. I will try and put out an update for every cycle, and if anything significant occurs in-between, I will update the blog here on Caring Bridge as needed.
Thank you everyone for your continued prayers and gifts as we continue this battle.
In May 2013 Danielle was diagnosed with a stage 3-4 synovial sarcoma residing in her right inner thigh of her leg. At the time of diagnosis the tumor was the size of a 16 inch softball. The best orthopedic surgeon/oncologist works for Northwestern Memorial Hospital in Chicago, so Danielle opted to leave her job and life in Oregon, to move back to IL to seek treatment. Her 2013 treatment plan consisted of 4 - 21 day cycles of inpatient chemotherapy, to be followed by direct radiation, both to control and stop the spread of the cancer, ultimately to be surgically removed on December 10th, 2013.
Chemo was difficult, she experienced extreme nausea at times, and lost her hair completely during the 3rd cycle around the 4th of July. All in all however, in my opinion, she handled chemo like champion. Radiation followed, and unfortunately this part was very painful and difficult. We opted to move into my parents home in Custer Park, and Danielle commuted 5 times a week to Northwestern to sit on a steel table and receive direct radiation on her right inner thigh. By the 3rd week she was experiencing 3rd degree burn symptoms, and had to continue this treatment regiment from September through November. After radiation, her oncology team ( oncologist, surgeon, radiation) decided they had the cancer under control, and felt comfortable going in and removing the tumor surgically. There were no other sites of cancer in 2013 outside of her right inner thigh. On December 10th, surgery was a success! There were a few potential scenarios that could happen, but they would know until they went into surgery. 3 surgeons were involved in the surgery (orthopedic,lymphatic,vascular), with a plastic surgeon on-standby during the operation, in case they needed to do a skin graph to fill the void of the tumor in her thigh. The best outcome occurred, and they were able to shift her exterior femoral muscle from the outside of her leg, over the top of her femur, to the inside of her leg, filling the tumor gap, and eliminating the need for any additional surgeries. It was a big win!
After surgery she was on a 3 month scan and check up routine, with everything looking good for the 1st year. Moved it back to every 4 months in 2015, all scans came up clear. Every time meeting with the oncologist and surgeon, both showing confidence that they felt it was under control. 4 month scans turned into 6 month scans in 2016, all good signs it was over.
In December 2016, the radiologist reviewing her scans noticed a small 2mm nodule in her right lung. It was so small, a biopsy wasn't possible, but we increased the frequency of her scans to 3 months to monitor. 3 months later, the nodule doubled in size to 4mm. Still it is very small, so they kept monitoring it in 3 month increments. 3 months later it was 6mm. In December 2017, never performing a biopsy, Danielle under went a video-assisted thoracoscopic wedge resection, to remove the 9mm nodule (VATS). Procedure went great! Biopsy showed positive and consistent with the original sarcoma. Margins were clean, they got everything they went in for, and again the team of doctors felt very confident this was the last we would see of this sarcoma. The recurrence itself was fairly rare, but if it was to come back it would appear in the lung as it did. Because there were not multiple nodules, it was not in both lungs, they felt confident this was an isolated incident, and that this removal should be the last. We went back on 3 month scans/checkup schedule.
In April 2019 another mass appeared in her lung, this time it was in her left lung. Again it appeared isolated, and the oncologist and thoracic surgeon felt good about going in and performing another VATS to resect the tumor, prior to biopsy. Procedure went great again! Biopsy showed positive and consistent with original sarcoma, and again, while it was rare to come back twice, because it was again an isolated incident, we were to believe this should be the last of it.
Current Situation:
About a month ago, on labor day weekend 2019, Danielle was experiencing shortness of breath and chest pains. Never during her cancer journey had she ever really experienced pain or shortness of breath of this significance, so we moved up her scans just to be safe. The CAT scan revealed a moderate pleural effusion and a mass-like enhancement in the posterior basilar pleura, the largest portion measuring 69mm x 28mm. In English, that means fluid was building up in the lining that protects her left lung, in addition to a tumor on her lung as well. They scheduled a biopsy for September 12th, and while they were in there doing the biopsy, they were to drain her effusion. They pulled out 1 liter of water out of her lung lining, and it offered her immediate relief. That relief lasted for 24 hours, only for her to start experience shortness of breath again. The effusion was most likely back.
We met with her oncologist on Monday September 16th, he made room for her on his schedule on a day he typically does not see established patients. This was a meeting to review the biopsy results, and discuss treatment. We were hopeful that surgery would be an option for her, but unfortunately that was not the case. Dr. Agulnik(oncologist) confirmed cancer consistent with the sarcoma again and informed us that he felt chemo was the only option, he wanted her to start it immediately as inpatient, the same regiment as 2013. We asked why?!? We asked can we just do surgery again? He said that the fluid that is building in her lung lining is filled with cancer cells, and that the primary way to remove that is through chemo. Also, he said there is not a thoracic surgeon out there that would agree to cut her open again, being the 3rd metastasis of her sarcoma, and especially only 4 months after her last recurrence.
Our hearts were broken. We just started feeling really good about where life had taken us after 6 years of turbulence. We recently moved back to where we originally met in Southern Illinois to Carbondale area, Carterville to be exact. Danielle is 2 months away from finishing her degree program in Public Health, and landed a great internship in Community Benefits at SIH (Southern Illinois Healthcare). I landed a great job with SIH working in telehealth, a field I am very passionate about.
Hearing his treatment plan felt like we had to start all over again, it was a truly demoralizing feeling. He wanted to attack it with 5 - 21 day cycles of chemotherapy, inpatient at Northwestern in Chicago.
On Thursday September 19th, Danielle underwent another thoracentesis @ Northwestern to remove the fluid from her lung effusion, after that she underwent a full body PET scan to examine the entire body for other possible cancer spots. PET scan came back negative! And this time, the draining of her lung held so much better, her breathing has been significantly better and has not needed to repeat. We went back home, where she underwent an echo-cardiogram to assess her heart strength, to make sure she could handle the chemo. Echo came back good, we were good to go.
We had hoped we could do the chemotherapy at SIH, at the Cancer Institute 2 miles from our home, but after meeting with their oncologist, the intensity of her chemo was something that they were not staffed to handle currently. However, she did establish care with Dr. Popalzai at SIH, and we will be able to have a local resource for supplemental care as needed during this process.
The plan is to travel to Chicago every 21 days, for 3-4 days of inpatient chemotherapy, for a total of 5 cycles. We start on October 4th in Chicago.
Details of everything is a lot for us to provide on an individual basis, as I hope you can understand. As Danielle's battle progresses, we will continue to update here on the Caring Bridge platform.
Please Please Please continue to send well wishes and prayer calls and texts to us both, this is not an effort to stop those by any means, we just really want Caring Bridge to be the hub for for details of her care and progress. I will try and put out an update for every cycle, and if anything significant occurs in-between, I will update the blog here on Caring Bridge as needed.
Thank you everyone for your continued prayers and gifts as we continue this battle.
Organizer
Bob Begeske
Organizer
Carterville, IL