This week we met with two more members of Matt's team of oncologists at K.U. We liked both of them and felt they were providing us with excellent care.
Dr. Myron is a medical oncologist. He reviewed Matt's case and all of his scans. He agreed with the diagnosis of proximal epitheliod sarcoma. He explained the disease (all of this familiar) and then he reviewed treatment options (new information). Chemotherapy has not proven effective for this cancer, partly because this cancer is so rare and there is simply not enough information on it. If chemo is used, it is if the sarcoma has spread to other parts of the body but even then it does not kill the cancer and cure the patient but sometimes it stabilizes it for a while. Grim news but hopefully we won't get to that point. Dr. Myron spoke with Dr. Massey who we met with next.
Dr. Massey's expertise is in radiation. She and Dr. Myron recommended radiation in this case to stabilize and sterilize the area that still shows cancer. The question was whether to do it before or after the surgery. She discussed with Dr. Rosenthal (the sarcoma specialist who will be performing Matt's surgery) and they agreed that radiation before surgery was the best option. This is because the cavity from which they removed the tumor and the area surrounding it which will need to be removed is so close to important muscles in his body. Matt's impression is that the preoperative radiation will make the surgery easier. I can't explain it more clearly because my brain is tired. Sorry!
Dr. Myron also ordered a PET scan because Matt brought it up. It will show if there is any inguinal lymph node involvement as well as any cancerous activity in his right leg because for the past several days he has been experiencing very mild pain in his leg muscle. This could be wholly unrelated to cancer and simply due to fatigue, however, it could also be a concern as tumors can grow anywhere in the body and often present themselves as aches and pains. We might become hypochondriacs!
The consensus then among his oncology team is to have a PET scan (scheduled for October 29) and then begin IMRT radiation therapy. It will be 5 days per week for 5 weeks. He will be able to get it done in St. Joseph as Dr. Massey has complete confidence in the radiation doctor in St. Joe. Matt will be able to work as normal unless the radiation burn gets too uncomfortable. The possible and most likely side effects include skin irritation and tenderness especially as the weeks continue, fatigue (beginning the 3rd week) and diarrhea. Finally, he will have his second surgery by Dr. Rosenthal to get rid of every evidence of remaining cancer in his bum.
Matt felt like he didn't belong at the cancer center. Neither of us feel like this is real. It is all so strange and new. Thank you for your prayers. We feel their sustaining power!
Thursday, October 22, 2015
Thursday, October 8, 2015
A New Normal
Our lives have changed with Matt's diagnosis. Our routines have been interrupted. Our health habits are changing. What is normal anymore? The big, bad "C" word has descended upon our lives. Sarcoma is a diagnosis for a lifetime. Even if treatment, whether it's surgery, chemo or radiation therapy, gets rid of all detectable cancer cells in Matt's body, sarcoma can return any time and any where. Can a sarcoma warrior ever feel completely whole? Or will there always linger a concern that this cruel cancer will strike again?
Matt has doctor appointments with a myriad of specialists. He has tests currently scheduled and more tests in the future that remain to be scheduled. He has another surgery. He has other treatment options to discuss and decide upon. During the days he is not being seen at some kind of medical facility, he goes to work as "normal." But because of the two weeks he missed from the first surgery in September, he is playing catch up with grading and planning. He goes into work very early and stays late at work to keep afloat, but he still has so much to do that he feels like he's drowning. The good thing about being busy at work is that it keeps him from dwelling on the cancer diagnosis. But his new normal is a lot of medical intervention and missed school and playing catch up at work. And cancer.
I haven't even mentioned the new diet he agreed to follow (to make me happy) which I researched, planned and carefully prepare for him (to keep him alive longer). We are both eating a super-duper healthy diet which includes only anticancer foods:
* Leafy greens galore
* Cruciferous vegetables
* Tomatoes
* Garlic, onions, etc
* Yellow and orange vegetables
* Berries, citrus fruits and juices and stone fruits
* All veggies except corn and potatoes
* Limited starchy vegetables such as pumpkin, sweet potatoes and winter squash
* Nuts and seeds
* Legumes
* Grass-fed meat and cage-free eggs (very limited)
* Certain fish such as salmon but we don't like these anyway
* Soy products including tofu and soy dairy
* 1 1/2 oz of greater than 70% dark chocolate per day
* Very limited multigrains
My priorities have shifted post-diagnosis from 1) homeschooling, 2) cleaning house, and 3) as much cooking as I could fit in to 1) cooking healthy, 2) cleaning, and 3) as much homeschooling as I can fit in. At this point we don't do much formal school though I do a reading lesson and preschool with Klaus most days and the kids play, play, play and read, read, read constantly. They do go to co-op once a week where they study subjects including physics, crochet, small business, geography, literature and multiplication facts.
I have had no ability to focus on home school. The word cancer seems to invade every thought throughout the day and night. There's no room to think of anything else. I am processing it, I realize. Some days I weep a lot. Most days I feel good and strong. But even on good days I can't focus on school work. I focus on projects and cleaning and cooking and keeping the household running. When will I feel normal again? Will it ever be normal again? What will the new normal be anyway? We are all discovering our new routine. Thank goodness we can discover it together.
Matt has doctor appointments with a myriad of specialists. He has tests currently scheduled and more tests in the future that remain to be scheduled. He has another surgery. He has other treatment options to discuss and decide upon. During the days he is not being seen at some kind of medical facility, he goes to work as "normal." But because of the two weeks he missed from the first surgery in September, he is playing catch up with grading and planning. He goes into work very early and stays late at work to keep afloat, but he still has so much to do that he feels like he's drowning. The good thing about being busy at work is that it keeps him from dwelling on the cancer diagnosis. But his new normal is a lot of medical intervention and missed school and playing catch up at work. And cancer.
I haven't even mentioned the new diet he agreed to follow (to make me happy) which I researched, planned and carefully prepare for him (to keep him alive longer). We are both eating a super-duper healthy diet which includes only anticancer foods:
* Leafy greens galore
* Cruciferous vegetables
* Tomatoes
* Garlic, onions, etc
* Yellow and orange vegetables
* Berries, citrus fruits and juices and stone fruits
* All veggies except corn and potatoes
* Limited starchy vegetables such as pumpkin, sweet potatoes and winter squash
* Nuts and seeds
* Legumes
* Grass-fed meat and cage-free eggs (very limited)
* Certain fish such as salmon but we don't like these anyway
* Soy products including tofu and soy dairy
* 1 1/2 oz of greater than 70% dark chocolate per day
* Very limited multigrains
My priorities have shifted post-diagnosis from 1) homeschooling, 2) cleaning house, and 3) as much cooking as I could fit in to 1) cooking healthy, 2) cleaning, and 3) as much homeschooling as I can fit in. At this point we don't do much formal school though I do a reading lesson and preschool with Klaus most days and the kids play, play, play and read, read, read constantly. They do go to co-op once a week where they study subjects including physics, crochet, small business, geography, literature and multiplication facts.
I have had no ability to focus on home school. The word cancer seems to invade every thought throughout the day and night. There's no room to think of anything else. I am processing it, I realize. Some days I weep a lot. Most days I feel good and strong. But even on good days I can't focus on school work. I focus on projects and cleaning and cooking and keeping the household running. When will I feel normal again? Will it ever be normal again? What will the new normal be anyway? We are all discovering our new routine. Thank goodness we can discover it together.
Friday, October 2, 2015
University of Kansas Sarcoma Center
Today was the day of Matt's second opinion visit at a cancer center which deals specifically with sarcomas. The doctor explained that less than 1% of all cancers are sarcomas which makes them rare enough that many oncologists do not have adequate experience with them for proper treatment. In fact, at Matt's first oncology appointment, the doctor freely admitted that he was NOT an expert in sarcomas and that he had never encountered Matt's type before.
There are about 40 types of sarcomas, and Matt's diagnosis of epitheliod sarcoma is #39 or 40 on the list! That is how rare it is! The doctor said that there are about 12 cases per year in the entire country. In addition to this, Matt's ES is proximal type, which is even more uncommon as this cancer generally appears on a person's extremity. (I've always known he was special!)
Because of this cancer's very aggressive nature, the best treatment is surgery. Matt's first surgeon was not able to do a second surgery. We felt uncomfortable with this because there were still cancer cells left behind. This sarcoma specialist, however, immediately acknowledged the fact that further and deeper surgery was required. He ordered an MRI which he would use as a kind of map to delineate the areas in his backside that would need to be removed. We are hoping that no particularly sensitive areas will need to be removed! Seriously, it is a possibility! Butt this cancer is so big, bad and ugly, that it is better for him to lose and reconstruct body parts than to let the cancer linger. The doctor expected a 2-3 week period of time for healing.
We both came away from the appointment with assurance and confidence in this doctor's knowledge, experience and expertise with regards to advanced surgery and epitheliod sarcoma. We feel he is in good hands.
After the pathology report comes back from the second surgery, we will know if the area is clean and free of cancer. Then we will decide on chemotherapy and radiation options. He has appointments with a radiation oncologist and medical oncologist at K.U. The sarcoma specialist mentioned that this kind of cancer does not normally respond to chemo. There is a small increase in survival rates with chemotherapy (10-12%) but with the dangers and difficulties associated with chemotherapy, that will be a decision we will have to carefully consider.
So... first the MRI (scheduled for Monday 10/12). Then appointments with the other oncology specialists. Then possible radiation before surgery, though this is less likely. Then the second surgery. Then possible chemotherapy and/or radiation. He will be closely followed for at least 10 years.
I'd like to mention here how supportive and helpful our close friends and family have been. Inspiring e-mails, simple phone calls, reassuring text messages, face-to-face sharing of experiences, babysitting services, and even just a simple hug. They have all been so appreciated. Thank you all!
There are about 40 types of sarcomas, and Matt's diagnosis of epitheliod sarcoma is #39 or 40 on the list! That is how rare it is! The doctor said that there are about 12 cases per year in the entire country. In addition to this, Matt's ES is proximal type, which is even more uncommon as this cancer generally appears on a person's extremity. (I've always known he was special!)
Because of this cancer's very aggressive nature, the best treatment is surgery. Matt's first surgeon was not able to do a second surgery. We felt uncomfortable with this because there were still cancer cells left behind. This sarcoma specialist, however, immediately acknowledged the fact that further and deeper surgery was required. He ordered an MRI which he would use as a kind of map to delineate the areas in his backside that would need to be removed. We are hoping that no particularly sensitive areas will need to be removed! Seriously, it is a possibility! Butt this cancer is so big, bad and ugly, that it is better for him to lose and reconstruct body parts than to let the cancer linger. The doctor expected a 2-3 week period of time for healing.
We both came away from the appointment with assurance and confidence in this doctor's knowledge, experience and expertise with regards to advanced surgery and epitheliod sarcoma. We feel he is in good hands.
After the pathology report comes back from the second surgery, we will know if the area is clean and free of cancer. Then we will decide on chemotherapy and radiation options. He has appointments with a radiation oncologist and medical oncologist at K.U. The sarcoma specialist mentioned that this kind of cancer does not normally respond to chemo. There is a small increase in survival rates with chemotherapy (10-12%) but with the dangers and difficulties associated with chemotherapy, that will be a decision we will have to carefully consider.
So... first the MRI (scheduled for Monday 10/12). Then appointments with the other oncology specialists. Then possible radiation before surgery, though this is less likely. Then the second surgery. Then possible chemotherapy and/or radiation. He will be closely followed for at least 10 years.
I'd like to mention here how supportive and helpful our close friends and family have been. Inspiring e-mails, simple phone calls, reassuring text messages, face-to-face sharing of experiences, babysitting services, and even just a simple hug. They have all been so appreciated. Thank you all!
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