Due to the growing number of requests, Kate has decided to include our address for those wishing to send support and best wishes. So for the next few months our receiving address will be…
39 Sagamore St.
Unit 2
Dorchester, MA 02125
Friday, October 16, 2009
"All things considered I'm doing just fine"
I must say I feel horribly guilty, but David and I are really having a wonderful time in Boston (all things considered). David and I have never moved into a place together and I must admit, that I find moving into the construction zone of my folks place in Dorchester very romantic. Picking out counter tops, paint and stain colors, cabinet fixtures... David is greatly enjoying putting together the cabinets and future. He has even purchased a computer program on home design and has been going around with a tape measure so he can create a visual mock up of the space. The apartment doesn’t have a stove yet, so meals have the fun innovated quality of camping without the inconvenience of no electricity, water, and heat. With the rest of the time, David and I are exploring the city. Many of the museums have free evenings, so we went to the Museum of Fine Arts last night and had a delightful time
I continue to have proton beam radiation and daily oral chemo treatments. Radiation should end near the end of November. I have not had any major side effects so far, though I admit that eating continues to pose a large challenge for me. From the first round of radiation, my jaw doesn’t open very widely and I have a big hole in the bone between my nose and mouth (the pallet). The hole is now being filled by a denture like device (called an optorator) which helps with talking, but the device makes chewing difficult. On top of which my current dose of radiation is making my mouth sore and dry. It is a most interesting conversion for someone who has always struggled with being overweight, now struggling to maintain weight. Eating is a lesson in patience that I am doing my best to learn. I am hopeful that many of these issues will get better with time, practice, and a change in my denture device; some already have, but others I fear might be permanent changes. Because of which however, I am fairly certain the Family Medicine Green Module can look forward to a pretty impressive protein smoothie bar when I return. And who doesn’t love a good smoothie!
Below I have included some pictures of my family from the Family Medicine Residency program who gathered to support me. This continuing adventure of dealing with ones own possible mortality and definite increased disability is ever changeling, but the love and support that I have received from so many different sources just fills my soul with hope and warmth. Both David and I are constantly reminded that we are not alone and we are so grateful for that. Thank you to everyone.
I continue to have proton beam radiation and daily oral chemo treatments. Radiation should end near the end of November. I have not had any major side effects so far, though I admit that eating continues to pose a large challenge for me. From the first round of radiation, my jaw doesn’t open very widely and I have a big hole in the bone between my nose and mouth (the pallet). The hole is now being filled by a denture like device (called an optorator) which helps with talking, but the device makes chewing difficult. On top of which my current dose of radiation is making my mouth sore and dry. It is a most interesting conversion for someone who has always struggled with being overweight, now struggling to maintain weight. Eating is a lesson in patience that I am doing my best to learn. I am hopeful that many of these issues will get better with time, practice, and a change in my denture device; some already have, but others I fear might be permanent changes. Because of which however, I am fairly certain the Family Medicine Green Module can look forward to a pretty impressive protein smoothie bar when I return. And who doesn’t love a good smoothie!
Below I have included some pictures of my family from the Family Medicine Residency program who gathered to support me. This continuing adventure of dealing with ones own possible mortality and definite increased disability is ever changeling, but the love and support that I have received from so many different sources just fills my soul with hope and warmth. Both David and I are constantly reminded that we are not alone and we are so grateful for that. Thank you to everyone.
Wednesday, October 7, 2009
Hello All
Due to the support she has received and some of the misunderstandings she has heard that exist about her condition Kate wanted to make a few statements, so without adieu here is Kate.
David and I are very comfortably settling into our temporary home in Boston. The smooth transition has occurred in large part due to the love and generosity of many of you who opened your doors and kitchens, sending food, cards, donations and so much positive energy. We are continually grateful for all the support and love which has been shared so openly with us.
I have a rare cancer in a very rare location that is causing unusual consequences. Because of which, there has been some confusion about what is going on. For those who are interested, I thought it may be useful for me to review my “cancer saga” up until this point, as a way of clearing things up.
ROUND 1:
In September of 2005, I had a sore tooth. I had just started medical school and was embarrassed that perhaps my dental hygiene had fallen by the way side. But then I felt the mass above my left back upper molar. When the mass was biopsied, it was found to be an osteosarcoma—a bone tumor. Most bone tumors occur in long bone (arms legs etc), but mine was located in the upper jaw and maxillary sinus.
In November of 2005, my tumor was surgically removed with what were believed to have clean margins—that is the tumor surround by normal tissue . The surgery removed most of my teeth on the left, my hard palate, my left maxillary sinus and my orbital floor. I then had an amazing reconstruction surgery that placed a prosthesis to hold up the eye, and used a muscle flap to reconstruct my palate and facial structure. After the surgery, I had nine months of IV chemotherapy. For a long while all my scans were stable and we hoped that my cancer was gone for good.
ROUND 2:
In February of 2008, I started to get headaches. I was on my surgery clerkship in medschool, and for a while blamed the headaches on the unique personality traits of those in the surgical profession. Unfortunately the eventual biopsy showed a recurrence of the cancer in the left sphenoid sinus. The original surgery had apparently left behind some cancer cells that had continued to grow. Unfortunately this time the proximity to my brain made the tumor inoperable (no surgery). For this reason, I was started on Proton beam radiation. Proton beam allows for a very well targeted specific radiation doses therefore when irradiating cancer very close to sensitive structures—like my brain—one can be more precise and have less adverse outcomes. Proton beam is only currently available at five centers in the US, one of which is Boston.
From July to September of 2008 I received 37 treatments of proton beam radiation at Mass General/Dana Farber (in Boston). I also received another nine months of IV chemotherapy. Whether it was from radiation or chemo, treatment left me with a large hole in palate graft (roof of my mouth). Having an open hole in between my nose and mouth, leads to a lot of humorous social situations. Continuous reminder to self: DO NOT LOOK DOWN WHEN DRINKING.
For a while, my scans were stable and it looked as though the proton beam had been effective at killing the cancer.
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ROUND 3:
In July of 2009, I started seeing double. At first scans did not show any change, so it was presumed to be due to either radiation damage or a change in one of prosthesis holding up my left eye. Unfortunately following scans showed growth in the right cavernous sinus and biopsy confirmed a second recurrence. The cavernous sinus holds several nerves that control the movement of the eye, sensation of the face and ability to lift ones eye lid (as well as others). These nerves are no longer functioning on the right side of my face. Lack of sensation on the face with palate issues makes eating a fascinating experience. I sometimes delicately dap the corners of mouth with a napkin to find an entire tomato sticking out that I had no idea was there. I have come to embrace the resulting mess.
I started an oral chemotherapy regime three weeks ago and last Thursday started more proton beam radiation. My radiation oncologist is currently estimating that I will receive somewhere between 30-35 treatments.
![]()
Despite all of this I really am feeling pretty good and I am currently having no side effect from any of treatments. David and I had a delightful picnic lunch this afternoon overlooking the Charles River and the last of the season’s sail boats. We then toured the USS Constitution (old ironsides), the world’s oldest commissioned warship built in the 1790s still afloat in Boston harbor. We continue to be so blessed for all the positive energy and love that we have received from so many different people. We are so grateful for all your support.
David and I are very comfortably settling into our temporary home in Boston. The smooth transition has occurred in large part due to the love and generosity of many of you who opened your doors and kitchens, sending food, cards, donations and so much positive energy. We are continually grateful for all the support and love which has been shared so openly with us.
I have a rare cancer in a very rare location that is causing unusual consequences. Because of which, there has been some confusion about what is going on. For those who are interested, I thought it may be useful for me to review my “cancer saga” up until this point, as a way of clearing things up.
ROUND 1:
In September of 2005, I had a sore tooth. I had just started medical school and was embarrassed that perhaps my dental hygiene had fallen by the way side. But then I felt the mass above my left back upper molar. When the mass was biopsied, it was found to be an osteosarcoma—a bone tumor. Most bone tumors occur in long bone (arms legs etc), but mine was located in the upper jaw and maxillary sinus.
In November of 2005, my tumor was surgically removed with what were believed to have clean margins—that is the tumor surround by normal tissue . The surgery removed most of my teeth on the left, my hard palate, my left maxillary sinus and my orbital floor. I then had an amazing reconstruction surgery that placed a prosthesis to hold up the eye, and used a muscle flap to reconstruct my palate and facial structure. After the surgery, I had nine months of IV chemotherapy. For a long while all my scans were stable and we hoped that my cancer was gone for good.
ROUND 2:
In February of 2008, I started to get headaches. I was on my surgery clerkship in medschool, and for a while blamed the headaches on the unique personality traits of those in the surgical profession. Unfortunately the eventual biopsy showed a recurrence of the cancer in the left sphenoid sinus. The original surgery had apparently left behind some cancer cells that had continued to grow. Unfortunately this time the proximity to my brain made the tumor inoperable (no surgery). For this reason, I was started on Proton beam radiation. Proton beam allows for a very well targeted specific radiation doses therefore when irradiating cancer very close to sensitive structures—like my brain—one can be more precise and have less adverse outcomes. Proton beam is only currently available at five centers in the US, one of which is Boston.
From July to September of 2008 I received 37 treatments of proton beam radiation at Mass General/Dana Farber (in Boston). I also received another nine months of IV chemotherapy. Whether it was from radiation or chemo, treatment left me with a large hole in palate graft (roof of my mouth). Having an open hole in between my nose and mouth, leads to a lot of humorous social situations. Continuous reminder to self: DO NOT LOOK DOWN WHEN DRINKING.
For a while, my scans were stable and it looked as though the proton beam had been effective at killing the cancer.
ROUND 3:
In July of 2009, I started seeing double. At first scans did not show any change, so it was presumed to be due to either radiation damage or a change in one of prosthesis holding up my left eye. Unfortunately following scans showed growth in the right cavernous sinus and biopsy confirmed a second recurrence. The cavernous sinus holds several nerves that control the movement of the eye, sensation of the face and ability to lift ones eye lid (as well as others). These nerves are no longer functioning on the right side of my face. Lack of sensation on the face with palate issues makes eating a fascinating experience. I sometimes delicately dap the corners of mouth with a napkin to find an entire tomato sticking out that I had no idea was there. I have come to embrace the resulting mess.
I started an oral chemotherapy regime three weeks ago and last Thursday started more proton beam radiation. My radiation oncologist is currently estimating that I will receive somewhere between 30-35 treatments.
Friday, September 25, 2009
Thank You
Over the past week Katherine and I (and our parents) have received a lot of messages from friends and family offering best wishes, prayers, and all kinds of support. We want to thank all of you for your kind words and generosity. Your positive energy sent our way has really helped keep us going this past week. We are doing well, working hard to stay positive, and getting ready for fall in Boston.
In order for Kate to be close to Boston public transportation we will be staying at her parents newly renovated property in Dorchester. Kate has asked me not to post the address online, but if you are interested in sending us a card, letter, etc., please leave a comment on this post requesting the address (please inclood your email address within the comment).
And as far as treatment goes, Kate’s chemotherapy continues (with no complaints) and her daily proton beam radiation will begin on October 1st. Again, we thank you all for your support.
In order for Kate to be close to Boston public transportation we will be staying at her parents newly renovated property in Dorchester. Kate has asked me not to post the address online, but if you are interested in sending us a card, letter, etc., please leave a comment on this post requesting the address (please inclood your email address within the comment).
And as far as treatment goes, Kate’s chemotherapy continues (with no complaints) and her daily proton beam radiation will begin on October 1st. Again, we thank you all for your support.
Friday, September 18, 2009
Biopsy and Other News
It has been a while since our last post and so we wanted to thank everyone for their patience while we have been attending to kate, her appointments, and making decisions as to where we go from here. These have been very tiring and trying days for us and we thank you all for understanding. But the news from this past week is as follows.
The Bad News
First all should know that the preliminary biopsy results (still awaiting more thorough results) found only tumor and no fungus or signs of fungus. Secondly, Kate has noted a set of other symptoms that suggests that the tumor is continuing to grow and is thus affecting more nerves. These are bad signs in that treatment of a tumor in this region is incredibly more difficult than treating fungus and there is a great imperative for immediate treatment.
The Good News
Thanks to her doctors up here in Boston, Kate has already begun treatment involving oral chemotherapy and will soon be starting some type of radiation therapy (probably proton beam).
Kate and I will be staying up in Boston for the length of the treatment (at least two months) and there is hope that this treatment could kill the tumor and reverse some of her symptoms. But as has been said in the past, the location of the tumor makes any treatment dangerous and the need for care in this region means that it will be difficult to treat the entire tumor. With that said, the radiologist is hopeful and her other doctors have been suggesting many different options for further treatment. Kate is feeling well, despite the obvious emotional toll this news has taken, and we are taking one day at a time. We will try in the future to be quicker with posts, but her health and well being takes precedence over this blog and all else. Thanks again.
The Bad News
First all should know that the preliminary biopsy results (still awaiting more thorough results) found only tumor and no fungus or signs of fungus. Secondly, Kate has noted a set of other symptoms that suggests that the tumor is continuing to grow and is thus affecting more nerves. These are bad signs in that treatment of a tumor in this region is incredibly more difficult than treating fungus and there is a great imperative for immediate treatment.
The Good News
Thanks to her doctors up here in Boston, Kate has already begun treatment involving oral chemotherapy and will soon be starting some type of radiation therapy (probably proton beam).
Kate and I will be staying up in Boston for the length of the treatment (at least two months) and there is hope that this treatment could kill the tumor and reverse some of her symptoms. But as has been said in the past, the location of the tumor makes any treatment dangerous and the need for care in this region means that it will be difficult to treat the entire tumor. With that said, the radiologist is hopeful and her other doctors have been suggesting many different options for further treatment. Kate is feeling well, despite the obvious emotional toll this news has taken, and we are taking one day at a time. We will try in the future to be quicker with posts, but her health and well being takes precedence over this blog and all else. Thanks again.
Thursday, September 10, 2009
Going to Boston
Kate has appointments and a biopsy in Boston early next week. We are leaving this weekend. The appointments are to take care of a few preliminaries before her biopsy on (9/15). After the biopsy we will be staying in Boston for a week (doctor’s orders).
Wednesday, September 2, 2009
New developments
As Katherine’s symptoms (headache, nausea, stuffiness, and a general feeling of “something being wrong”) had been progressing (Dr. speak for getting worse) over the past three days, her doctors wormed to the idea of treating her for a fungal infection. Knowing well that a growth of either cancer or infection could be the cause of these stronger symptoms, her doctors (primary care here in Greenville, oncology at Duke, and radiology in Boston) felt the treatment of a fast growing infection to be more imperative and more immediately effective than treating with chemotherapy as if it where cancer.
This movement by her doctors (towards treating for infection) came to a head today, after the report came in from Greenville’s radiology department, of scans (CT and MRI) that we had gotten made last night. These scans where done in order to give the surgeon who would be doing Kate’s biopsy the “lay of the land” so she would know as much as she could before calling us up to Boston. But while these scans where being shipped off to Boston, Greenville’s radiology team read them and saw signs that suggested advancement of the disease. Upon being notified of these readings and of the advancement, her primary care dr. (with agreement from her oncologist and radiologist) started Kate on an anti-fungal medicine. She will continue to take the anti-fungal medicine while we await the biopsy.
In closing we are still no closer to knowing whether the mass is cancer or a fungal infection. The plan is still to await the biopsy to determine what it is and where to go from there, but at least, in the mean time; we are not just sitting on our hands.
This movement by her doctors (towards treating for infection) came to a head today, after the report came in from Greenville’s radiology department, of scans (CT and MRI) that we had gotten made last night. These scans where done in order to give the surgeon who would be doing Kate’s biopsy the “lay of the land” so she would know as much as she could before calling us up to Boston. But while these scans where being shipped off to Boston, Greenville’s radiology team read them and saw signs that suggested advancement of the disease. Upon being notified of these readings and of the advancement, her primary care dr. (with agreement from her oncologist and radiologist) started Kate on an anti-fungal medicine. She will continue to take the anti-fungal medicine while we await the biopsy.
In closing we are still no closer to knowing whether the mass is cancer or a fungal infection. The plan is still to await the biopsy to determine what it is and where to go from there, but at least, in the mean time; we are not just sitting on our hands.
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