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.
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.
