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.
Friday, September 25, 2009
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.
Saturday, August 29, 2009
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.
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.
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