Matt heard today from the Mayo Clinic regarding his case. The Mayo Clinic is ranked 3rd in the entire nation for cancer care. Their recommendation for treatment is not chemotherapy, but radiation directed at the tumor site. Dr. A.J. in St. Joseph said that this would take about 5 minutes of his day, every day, for a matter of weeks. He might get a sunburn kind of reaction but other than that he would be able to continue his normal activities including work.
He was also able to be in contact with University of Kansas today and scheduled a second opinion at the sarcoma center for this Friday. We're both really glad that this appointment is so soon. At first when I called last week, the receptionist mentioned the soonest appointment would be a few weeks out. Maybe his case is so urgent, they were able to get him an earlier appointment. I don't know, maybe not. Whatever the reason, we're both thankful. We know a couple of people who have received care at the cancer center at K.U. and they've said that it's excellent care.
I also wanted to mention that Matt spoke in church this last Sunday. I was in the foyer dealing with a very ornery Klaus. I was surprised to hear him get up to the microphone to speak because the week prior he had broken down with emotion. I worried for a moment that he would cry but as I listened I was thoroughly impressed with his composure and his strength. He bore his testimony of the blessings he enjoys as a member of the restored gospel of Jesus Christ including an eternal family, sealed together for eternity in a holy temple. It was moving to people listening who didn't know anything of his condition. To those of us who knew that he had cancer, it was particularly stirring and strengthening. We are learning about submission through this experience, that is for certain.
Tuesday, September 29, 2015
Sunday, September 27, 2015
Proximal-type Epitheliod Sarcoma
So much has happened in the past week. I wish I could write every day because there are so many emotions and conversations and phone calls but it's a miracle that I have 20 minutes to write once a week, it is so busy around here.
After I posted last Sunday, Matt and I had time in the evening to spend together and do a little research online. At that point we did not have a definitive diagnosis. We only knew that the pathologist's best guess was epitheliod sarcoma. Let me tell you, doing research online on "epitheliod sarcoma" is not a pleasurable experience. The disease is rare, less than 1% of all cancers. It is also aggressive. 65% mortality rates after 10 years. In males, it is worse. (Check: Matt is a male). Evidence of necrosis indicates worse disease (check). Size of tumor greater than 2 cm (check). Area of tumor, proximally meaning at the trunk of the body and not at the extremities, indicates worse prognosis (check). It appeared as though all of the indicators that would give Matt a worse prognosis were going against him.
We cried and we talked and we wondered how and why! But then we remembered that God is in control. Each of our lives are in God's hands. We will experience what is necessary for us to be comfortable in His presence again. We prayed together and Matt's answer to prayer was the scripture coming into his mind, "Be still. And know that I am God." That brought me comfort because what I was feeling after the prayer was heartache. I could physically feel my heart breaking. I could feel the pain in my heart that I felt when my parents were divorcing. But through talk and through tears, I too felt comforted that Matt's life was in God's caring hands.
On Monday he had his CT scans. The two giant bottles of barium he had to drink weren't too bad. We had the day together to take care of home and family. He and I also stopped at the benefits office of his school district where he works. The administrator explained how his 64 accumulated sick days need to be used up before applying for his short-term disability coverage if his cancer treatment required him to miss work. We just signed up for that a couple of years ago because I had read Dave Ramsey recommended it. I'm glad we did.
On Monday night we visited with a family in our ward who have become our close friends. Her dad had cancer when she was a teenager. She spoke about his experience with the disease and her experience as a child dealing with it. We were glad to be armed with more information but overall it kind of made us feel sad. We realized that death really could be a result of this disease.
On Tuesday, he actually had three doctor appointments. The first was with his surgeon who said that his wound was healing well and that the CT scans showed no evidence of metastasis! That was good news! We raced to his primary care physician's office next to check in with her. She just wanted to establish her relationship with him and offer her services in any way he needed. All of his records will be in her office. Then we drove back just in time to oncology.
We met with Dr. A.J. who unfortunately explained that the radiology report that had been sent to Mayo Clinic had not come back yet with a definitive diagnosis. He couldn't offer us much information specific to Matt's case except that it was a kind of epitheliod sarcoma but there are many kinds of this sarcoma. They react differently to cancer treatment. Chemotherapy is usually not effective. Sometimes radiation doesn't work either. He answered our questions and explained things to us clearly but Matt came out feeling like he was downplaying the problem. I felt really uncomfortable with the office itself. It was rundown and dirty. He did tell us that the surgeon was not willing to go back in to try to get all of the cancer out of the primary tumor site. He took out all that the could see and would not know what else to surgically remove. The greatest success with epitheliod sarcomas is to be sure and get rid of the cancer with wide, clear margins during surgery. His margins were not clean. There are still cancer cells at the primary site.
More waiting. But at least Matt could go back to work on Wednesday. I woke up on Wednesday wondering how in the world I was supposed to go back to normalcy. I'm just supposed to do my normal routine now?! I couldn't even remember what we were doing for homeschool a few weeks earlier. It's like I went through my day like this: "We have books to return to the library today. Matt has cancer. The baby needs her diaper changed. I'll change it while thinking about the fact that Matt has been diagnosed with cancer! The kids will be hungry for a snack soon. I'll let them find a snack. Matt has cancer." It couldn't sink in for some reason. I was just trying to process it but it just didn't make any sense. Why does he have cancer?! That day we filled in our homeschool records for the month of September and it kind of got my mind back into our routine.
Thursday morning we were actually doing school when I got a phone call from an emotional Matt. I let the kids draw/color their maps on their own while he related that Dr. A.J. had gotten the pathology report from the Mayo Clinic back. He was confirmed with a diagnosis of "proximal-type epitheliod sarcoma." We were glad to have a definitive diagnosis (a friend of ours is stuck dealing with a kind of cancer that they don't even know about and can't diagnose!). The bad news is that this proximal type of ES is even worse than just ES. It is a more aggressive and more recurring than ES. Proximal refers to the fact that the tumor was located on the trunk of the body.
Any kind of sarcoma is a diagnosis that a patient will have to live with for the rest of his/her life. Matt will probably be monitored very closely to watch for recurrence which is very common. This cancer is not a death sentence. But it has opened our eyes up to the fact that fatality is possible. We are spending time this weekend discussing what needs to be done in case of the worst. We are checking on policies and writing a will. We are crying and talking a lot with friends about their experiences. I think it is finally sinking in.
But my plan is to get all of the death talk/plans over with now and then set them aside. Matt and I are hopeful. We are prayerful. We are close. We are studying lifestyle changes which may help prevent further cancer growth. We are getting a second opinion from a sarcoma specialist at the University of Kansas. We are fasting today along with family members and friends in a united effort to pray for a miracle and also to learn to submit to His will and sense His hand in this trial.
After I posted last Sunday, Matt and I had time in the evening to spend together and do a little research online. At that point we did not have a definitive diagnosis. We only knew that the pathologist's best guess was epitheliod sarcoma. Let me tell you, doing research online on "epitheliod sarcoma" is not a pleasurable experience. The disease is rare, less than 1% of all cancers. It is also aggressive. 65% mortality rates after 10 years. In males, it is worse. (Check: Matt is a male). Evidence of necrosis indicates worse disease (check). Size of tumor greater than 2 cm (check). Area of tumor, proximally meaning at the trunk of the body and not at the extremities, indicates worse prognosis (check). It appeared as though all of the indicators that would give Matt a worse prognosis were going against him.
We cried and we talked and we wondered how and why! But then we remembered that God is in control. Each of our lives are in God's hands. We will experience what is necessary for us to be comfortable in His presence again. We prayed together and Matt's answer to prayer was the scripture coming into his mind, "Be still. And know that I am God." That brought me comfort because what I was feeling after the prayer was heartache. I could physically feel my heart breaking. I could feel the pain in my heart that I felt when my parents were divorcing. But through talk and through tears, I too felt comforted that Matt's life was in God's caring hands.
On Monday he had his CT scans. The two giant bottles of barium he had to drink weren't too bad. We had the day together to take care of home and family. He and I also stopped at the benefits office of his school district where he works. The administrator explained how his 64 accumulated sick days need to be used up before applying for his short-term disability coverage if his cancer treatment required him to miss work. We just signed up for that a couple of years ago because I had read Dave Ramsey recommended it. I'm glad we did.
On Monday night we visited with a family in our ward who have become our close friends. Her dad had cancer when she was a teenager. She spoke about his experience with the disease and her experience as a child dealing with it. We were glad to be armed with more information but overall it kind of made us feel sad. We realized that death really could be a result of this disease.
On Tuesday, he actually had three doctor appointments. The first was with his surgeon who said that his wound was healing well and that the CT scans showed no evidence of metastasis! That was good news! We raced to his primary care physician's office next to check in with her. She just wanted to establish her relationship with him and offer her services in any way he needed. All of his records will be in her office. Then we drove back just in time to oncology.
We met with Dr. A.J. who unfortunately explained that the radiology report that had been sent to Mayo Clinic had not come back yet with a definitive diagnosis. He couldn't offer us much information specific to Matt's case except that it was a kind of epitheliod sarcoma but there are many kinds of this sarcoma. They react differently to cancer treatment. Chemotherapy is usually not effective. Sometimes radiation doesn't work either. He answered our questions and explained things to us clearly but Matt came out feeling like he was downplaying the problem. I felt really uncomfortable with the office itself. It was rundown and dirty. He did tell us that the surgeon was not willing to go back in to try to get all of the cancer out of the primary tumor site. He took out all that the could see and would not know what else to surgically remove. The greatest success with epitheliod sarcomas is to be sure and get rid of the cancer with wide, clear margins during surgery. His margins were not clean. There are still cancer cells at the primary site.
More waiting. But at least Matt could go back to work on Wednesday. I woke up on Wednesday wondering how in the world I was supposed to go back to normalcy. I'm just supposed to do my normal routine now?! I couldn't even remember what we were doing for homeschool a few weeks earlier. It's like I went through my day like this: "We have books to return to the library today. Matt has cancer. The baby needs her diaper changed. I'll change it while thinking about the fact that Matt has been diagnosed with cancer! The kids will be hungry for a snack soon. I'll let them find a snack. Matt has cancer." It couldn't sink in for some reason. I was just trying to process it but it just didn't make any sense. Why does he have cancer?! That day we filled in our homeschool records for the month of September and it kind of got my mind back into our routine.
Thursday morning we were actually doing school when I got a phone call from an emotional Matt. I let the kids draw/color their maps on their own while he related that Dr. A.J. had gotten the pathology report from the Mayo Clinic back. He was confirmed with a diagnosis of "proximal-type epitheliod sarcoma." We were glad to have a definitive diagnosis (a friend of ours is stuck dealing with a kind of cancer that they don't even know about and can't diagnose!). The bad news is that this proximal type of ES is even worse than just ES. It is a more aggressive and more recurring than ES. Proximal refers to the fact that the tumor was located on the trunk of the body.
Any kind of sarcoma is a diagnosis that a patient will have to live with for the rest of his/her life. Matt will probably be monitored very closely to watch for recurrence which is very common. This cancer is not a death sentence. But it has opened our eyes up to the fact that fatality is possible. We are spending time this weekend discussing what needs to be done in case of the worst. We are checking on policies and writing a will. We are crying and talking a lot with friends about their experiences. I think it is finally sinking in.
But my plan is to get all of the death talk/plans over with now and then set them aside. Matt and I are hopeful. We are prayerful. We are close. We are studying lifestyle changes which may help prevent further cancer growth. We are getting a second opinion from a sarcoma specialist at the University of Kansas. We are fasting today along with family members and friends in a united effort to pray for a miracle and also to learn to submit to His will and sense His hand in this trial.
Sunday, September 20, 2015
Coping with Cancer
For about a month or so Matt had noticed feeling a little uncomfortable while sitting down. Nothing too bothersome though so he didn't really think about it. He never mentioned it to me. In early September he felt a lump at the very top of his leg, almost into his bum. It was large enough to cause concern so we did research online and both felt like he should call the doctor and have it checked out. His doctor had no idea what it was and referred him to a general surgeon. The surgeon sent him for an ultrasound which indicated an abscess.
On Monday, September 14, 2015 Matt had surgery to drain the abscess. When the doctor got in there (it was fairly deep), however, it didn't drain much. He knew at that point that it wasn't an abscess. Instead he removed the entire mass (4 cm x 3 cm x 3 cm). He spoke with me directly afterward and said Matt would need to take the whole week off of work instead of the two days he had planned and I knew Matt would not be glad to hear that when he "woke up." Dr. H. sent the mass to pathology and would know more about what exactly it was by Wednesday afternoon.
Matt called the doctor on Thursday morning because he was concerned that the general area was red and warm and swollen though the incision itself looked really good and clean. The doctor started him on antibiotics just to be sure and then I could hear the words no one wants to hear, "I got the pathology report back and I'd like you and your wife to come in tomorrow so we can talk together." That was a long, worrisome day and a half!! We knew it had to be something bad but didn't know how bad. The waiting was awful. I was busy with my normal life but Matt was stuck at home resting and lying down, unable to drive, unable to work, trying not to go crazy with worry.
Finally the time comes to visit with the doctor. He checks the wound which looks fine, then makes us wait another torturous 15 minutes before coming back in to "talk." The tumor was malignant though the pathologist could not determine what kind of cancer. He ran numerous stains but nothing came up conclusive. This was only the 2nd time in his 15 years that this had happened. They are sending the mass to the Mayo Clinic for further diagnosis. It was clear, however, that there was cancer and that not all of the cancer was removed. It was clear that on a cellular level there was a lot of mitoses which indicates rapid growth. He threw out words like carcinoma and sarcoma but really could not say exactly what we are dealing with. I heard enough, however, to alert me to the reality that we were dealing with some big, bad cancer stuff! On the way out of the office as Matt and I are trying to hold it together, I shouted out, "I know what we can call it! We can call it butt cancer!!" We laughed and laughed which felt really good but Matt didn't like the sound of it after all.
Matt is scheduled for CT scans on Monday to locate any other possible areas of cancer. He has a checkup with his surgeon to look at the incision and then a consultation with oncology at 3:45 on Tuesday, September 22nd. We hope the appointment on Tuesday will be more informative. We hope we can figure out what we are dealing with, how bad it is, and come up with a treatment plan.
We've had blessings which have promised health and peace, reassurance and comfort. No matter what we are facing, we know we can deal with it together. We have a good team of kids, parents, siblings, friends, church family and coworkers. I know a lot of people who are praying for us already! Jesus Christ is the ultimate healer. Heavenly Father wants to teach Matt something here. He's ready to learn what it is and move on!
On Monday, September 14, 2015 Matt had surgery to drain the abscess. When the doctor got in there (it was fairly deep), however, it didn't drain much. He knew at that point that it wasn't an abscess. Instead he removed the entire mass (4 cm x 3 cm x 3 cm). He spoke with me directly afterward and said Matt would need to take the whole week off of work instead of the two days he had planned and I knew Matt would not be glad to hear that when he "woke up." Dr. H. sent the mass to pathology and would know more about what exactly it was by Wednesday afternoon.
Matt called the doctor on Thursday morning because he was concerned that the general area was red and warm and swollen though the incision itself looked really good and clean. The doctor started him on antibiotics just to be sure and then I could hear the words no one wants to hear, "I got the pathology report back and I'd like you and your wife to come in tomorrow so we can talk together." That was a long, worrisome day and a half!! We knew it had to be something bad but didn't know how bad. The waiting was awful. I was busy with my normal life but Matt was stuck at home resting and lying down, unable to drive, unable to work, trying not to go crazy with worry.
Finally the time comes to visit with the doctor. He checks the wound which looks fine, then makes us wait another torturous 15 minutes before coming back in to "talk." The tumor was malignant though the pathologist could not determine what kind of cancer. He ran numerous stains but nothing came up conclusive. This was only the 2nd time in his 15 years that this had happened. They are sending the mass to the Mayo Clinic for further diagnosis. It was clear, however, that there was cancer and that not all of the cancer was removed. It was clear that on a cellular level there was a lot of mitoses which indicates rapid growth. He threw out words like carcinoma and sarcoma but really could not say exactly what we are dealing with. I heard enough, however, to alert me to the reality that we were dealing with some big, bad cancer stuff! On the way out of the office as Matt and I are trying to hold it together, I shouted out, "I know what we can call it! We can call it butt cancer!!" We laughed and laughed which felt really good but Matt didn't like the sound of it after all.
Matt is scheduled for CT scans on Monday to locate any other possible areas of cancer. He has a checkup with his surgeon to look at the incision and then a consultation with oncology at 3:45 on Tuesday, September 22nd. We hope the appointment on Tuesday will be more informative. We hope we can figure out what we are dealing with, how bad it is, and come up with a treatment plan.
We've had blessings which have promised health and peace, reassurance and comfort. No matter what we are facing, we know we can deal with it together. We have a good team of kids, parents, siblings, friends, church family and coworkers. I know a lot of people who are praying for us already! Jesus Christ is the ultimate healer. Heavenly Father wants to teach Matt something here. He's ready to learn what it is and move on!
Subscribe to:
Posts (Atom)