Hello again.

I have a confession. I am a horrible blogger. I must apologize to all of you for keeping you guessing as to what is going on with me. More importantly, I must apologize to all those who had to answer lots of questions from caring people that I should have answered for myself.



As of 9 am this morning (Nov. 17th), I have finished the recommend regime of 33 days of proton beam radiation. Please insert appropriate cheers and applauds. Due to appointments with other specialists, I will need to stay in Boston one more week before going off to spend Thanksgiving with my family in Maine. If all things go to plan, David and I should be in our house in Farmville on December 1st. Please insert louder cheers and applauds here.


Though the immediate side effects from radiation have been a little more server on this round of radiation than the last, overall I am very fortunate in the way my body has handled the treatment. I have a few radiation burns, a few bald spots in my hair, and swallowing continues to be difficult. I also have a general lack on energy reserve so I need to eat and nap frequently. But now that I have finished treatment (you can still cheer and applaud if you would like) all these things should improve. With radiation, particularly with two treatment regimes in the same location, there is an increased chance of long term complications from therapy. These however, may not present themselves for many months, to years into the future.


I will continue my current oral chemotherapy for another week. My oncologist hopes to then place me in a trail of another oral chemotherapy for the stabilization of bone tumors. He did not have a lot of information on the medication at the time of our last appointment, and I will keep you up to date as I know more about it.


My radiation oncologist is adamant that doing any scans of the tumor now would be next to useless, due to the amount of inflammation that radiation causes. She will not order another scan for 6 to 8 week. This thought is rather anxiety provoking given in August and September I received such frequent scans many showing the tumors growth at a frightening rate. However, I believe at this point, how I am doing clinically may be more reliable than a scan can be. To be blunt, there is really no place for the tumor to grow without me showing additional symptoms. Furthermore in between the last two scans, several more nerves were affected by the tumors growth, but the area is so small that the scans could not see any change. As such, since my symptoms have stayed the same since the beginning of treatment in early October, I am very optimistic that there has been no progression.


David and I continue to be thankful for everyone’s endless support and love. You all continue to uplift us on even the most difficult days. We are so eager to get home and see everyone. Love you all and see you in the near future.

Katherine

More Suport from the staff at Pitt Memorial's Family Medicine Program.

The fabulous people at Pitt Memorial Hospital’s Family Medicine Residency Program are selling wristbands (with “Always Believe” and “Never Back Down” written on either side) in effort to support their fellow comrade in arms during medical treatment. Each wristband is $5 and all proceeds go to aforementioned good cause. “We are thankful to any and all who buy these wristbands and wear them in support.” All interested individuals should contact Dr. Daniel Becerra (family medicine intern) at becerrag@ecu.edu.


This is not a request and no one need feel obligated to do anything. Support is given in many different heartfelt ways and is received, loved, and appreciated all the same.

Cheers to the family medicine program for their efforts in support of the cause.

On Second Thought

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

"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.

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.

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.

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.

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.

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).

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.

As things stand now

On Friday (August 21st) at an appointment with Kate’s oncologist, she and I were notified of the location and severity of a “reoccurrence” of her cancer. This “reoccurrence” had first been suggested by Kate’s oncologist when, in July, she started experiencing eye problems (double vision as well as tearing and tracking issues). As these symptoms continued through the months of July and August, Kate was given MRI and CT scans in an effort to determine weather these events were caused by a reoccurrence, her previous radiation or chemotherapy treatments, or a viral infection. As stated above, we were told that, upon review of these scans and her medical history by her oncologist, the Duke hospital oncology department, the duke radiology department, and a number of other hospitals known for their knowledge and treatment of cancer, that indeed there was a tumor in and around her Cavernous Sinus (a small aria located near to the brain stem) and that the only operations and therapies they could think to suggest would/could not be attempts to cure the condition, but only to buy us sometime.

After collecting ourselves Katherine and I notified our parents of this information. A day latter, lead by Katherine’s tireless mother Emily, we began to locate as many and as good of second opinions as we could find, and began contacting other physicians to see what they felt the best course of action would be. Since then the attentions of a number of oncologists, radiologists, infectious disease specialists, and other family docs, within North Carolina and up and down the east coast have been focused on Kate’s situation, her MRI’s, and her medical reports. While most of these second opinions have agreed with the original diagnosis, a few have reopened the possibility that this could be an infection.

As of tonight the situation is this. Kate has a growing mass located near some extremely “high value real-estate.” The location of the mass makes it nearly impossible to attempt to remove it by surgery or even biopsy the mass itself. The mass could be a type of fungal infection known as Aspergillus . This is a very dangerous, but curable infection that would only require Kate to take a set of incredibly strong antiviral medicines. Medicines that are as powerful and debilitating as some chemotherapies. Emily, members of Greenville’s infectious disease team, and Dr. Chan ( the physician in Boston who headed Katherine’s last treatment process, Proton beam therapy) think that this is likely due to Kate having had this same infection (in another location) earlier this year (“removed” in May) and due to signs they see in the MRI. But the mass could also be a reoccurrence of her cancer. Which could be treated, but likely not cured by some combination of surgery, chemotherapy, and radiation. This diagnosis was made by the folks previously mentioned at duke, and has been seconded by the infectious disease doctors at Duke, radiologists in Winston Salem and Greenville, as well as by Kate’s primary physician.

As there are arguments for and against the mass being one thing or the other and arguments against treating one way without ruling out the other, our next step will be to do a biopsy of a nearby location which could tell us what the mass is without approaching that high value real-estate. That biopsy (we are told) should give us enough information to determine the course of treatment. Either way this is an incredibly serious situation which upon receiving the results of the biopsy, will require Katherine to begin treatment in earnest.

We know and greatly appreciate that many of you will want to do whatever you can to help at this time. As things stand right now what Kate wants most is for this thing to be found to be an infection (as that is more easily curable and would reverse the vision problems). All of your prayers and best wishes towards that and toward her health in general are all that we would ask.