I'm rushed to get some stuff up here so this is a half-finished blog from a week or so ago...
Today I went to my radiation appointment to get scans taken and to prep for the real deal.
The first step of this appointment was to prepare a cast for treatments. In other words, the techs had to find the exact position that they would need me to be placed so that the beams would be on target. Since I would be going everyday for treatment, I would need to be able to lay in the exact same position every time. So to accomplish this, they had me lay on the table with my legs over this thin blue mat. Then, they filled the mat with two chemicals, which when combined formed a foam that surrounded my legs. This process took about 10 minutes and was quite pleasant because the chemicals were very warm. After 10 the foam was hardened enough to make a nice little leg-shaped trough. I asked why they only wanted to make a leg cast, since it was my pelvis that would be irradiated; the tech explained that keeping my legs still would stabilize my pelvis, and other barriers would keep me from turning. Little did I know that they other, more permanent plans to keep my pelvis in place. In addition to the leg cast, they used lasers in a cross-pattern to ensure alignment. So to make the points where the lasers would intersect they used tattoo. That's right, tattoo. I have 5 very small black dots permanently inked into my skin- 3 in a line on my torso, lower abdomen, and above the pubic bone; 2 to the right and left of my navel. Not what I was expecting for that second tattoo. I know I will NEVER get another tattoo on or anywhere near my pubic bone again! I remember I asked the tech if he could just make a little design or something, but he told me no- his forte was circles. Oh well, worth a shot. Anyways, each time I was to come in for a treatment, the techs could now line up these lasers with my tattoos and know exactly where to irradiate.
The rest of the appointment was about 45 minutes of CT scans. Just me laying on this table half-naked while this massive xray machine took pictures from side to side and from up top. My arms were above my head and my circulation was starting to get cut-off... very uncomfortable. But finally I was done and ready to meet with my lovely radiation oncologist. Apparently he is the only gynecological radiation oncologist in the area. Well, he told me that he and my gyn onc had a new plan for me. This one I wasn't expecting at all. Instead of doing radiation for 5 weeks on both sides of my pelvic lymph nodes, he thought it would be just as effective to only do the right side- where the original tumors were- as well as the para-aortic nodes (the spot near my two large abdominal blood vessels where some of the tumors had spread). He reasoning was that this way would greatly reduce the amount of radiation my uterus would be exposed to. Of course, I liked this idea a great deal. However, he said that he had discussed with my gyn onc that the treatments would be most effective if combine with low-dose chemotherapy with Taxol as well. The plan was, then, to do 5 wks of radiation (M-F) and chemotherapy once a week (M) for 5 wks. Basically a double whammy of treatments for 5 whole weeks. As crappy as this sounds, the combo plan has shown success in lengthening remission times, and is the best way to protect my uterus. So there it is. This is my next 5 weeks....
More to follow soon!!!
July 31, 2009
July 16, 2009
Another Cancer Blog
I randomly came across this ovarian cancer blog by a woman who has CCC (clear cell carcinoma). It's pretty comprehensive but if anyone wants to check it out...
Also.................... everyone reading this should be a Follower! It's quick, just click on the link on the side bar- ------------------------------------------------------------------------------------->
you don't need to be a member I think, but if you are it does allow you to comment. It would definitely be nice to see who all is reading this!
Oh and shout out to Adam who is done with his radiation treatment!!!!! woohoooooooooooooooooooo! Way to keep strong Adam!!!
Also.................... everyone reading this should be a Follower! It's quick, just click on the link on the side bar- ------------------------------------------------------------------------------------->
you don't need to be a member I think, but if you are it does allow you to comment. It would definitely be nice to see who all is reading this!
Oh and shout out to Adam who is done with his radiation treatment!!!!! woohoooooooooooooooooooo! Way to keep strong Adam!!!
July 15, 2009
July 14, 2009
Hair update
So I would take a pic but my camera busted this past weekend
Head: dark blonde peach fuzz. it's about an inch in some places but sparse and short in others. I saw a newborn today in the clinic and I have to say that the baby and I were sporting the same hairstyle- I have lots of places where the hair is growing in slower than others- especially on the sides. It looks like I have a receding hairline. I really really hope that I am like a baby and it will eventually all grow in. Otherwise I may be wearing a scarf my whole life :(
Eyebrows: um.. yeah still not there. I look pretty stupid, especially when I am tired. I don't even have many little stubblies here...
Lashes: I have one.. ONE.. eyelash on my left eye. It's a reminder of how long and black they used to be. Everyone says I should pull it but I want that reminder... there are little blonde stubblies coming in thank god.
Legs: some short hairs but blonde!!!
Pits: longish and blonde!
I have decided that in honor of my new hair that I am not going to cut or shave it for awhile, if ever. Especially since it is growing in lighter. It feels wrong to shave something I have been waiting so long to get...
I am at the point where I am feeling more comfortable being bald. I don't wear the wigs often because of the heat, and when it's really hot I walk around my house or yard bald. I just wish that it was growing back evenly because then I could really just go bald all summer.
Head: dark blonde peach fuzz. it's about an inch in some places but sparse and short in others. I saw a newborn today in the clinic and I have to say that the baby and I were sporting the same hairstyle- I have lots of places where the hair is growing in slower than others- especially on the sides. It looks like I have a receding hairline. I really really hope that I am like a baby and it will eventually all grow in. Otherwise I may be wearing a scarf my whole life :(
Eyebrows: um.. yeah still not there. I look pretty stupid, especially when I am tired. I don't even have many little stubblies here...
Lashes: I have one.. ONE.. eyelash on my left eye. It's a reminder of how long and black they used to be. Everyone says I should pull it but I want that reminder... there are little blonde stubblies coming in thank god.
Legs: some short hairs but blonde!!!
Pits: longish and blonde!
I have decided that in honor of my new hair that I am not going to cut or shave it for awhile, if ever. Especially since it is growing in lighter. It feels wrong to shave something I have been waiting so long to get...
I am at the point where I am feeling more comfortable being bald. I don't wear the wigs often because of the heat, and when it's really hot I walk around my house or yard bald. I just wish that it was growing back evenly because then I could really just go bald all summer.
The last two weeks, radiation consult
whoaaaaa so it's been over 2 weeks... lots happening non-medically speaking...
I had a great 4th- went to a BBQ and watched the fireworks from a balcony in Fremont. They were choreographed by a DJ set blasting out of an old-school boom box. Also complete with Michael Jackson hits in remembrance. Later that night we saw an awesome funk band and danced the night away...
I spent most of the last few weeks house sitting for a friend in an apartment a little south of downtown. I was feeding their dog (who had a mohawk) and taking advantage of living in an urban environment with a pool and hot tub on the roof of the apartment complex. Basically this meant that I spend a good portion of the day dozing off or reading Harry Potter in the sun with an occasional dip in the pool. Not a bad way to pass the time, eh?
Last week I had two visitors all the way from Australia, something which I had been looking forward to for awhile. I had met one of the guys in the train station while traveling in Barcelona, and ended up taking the train with he and his friend to Pamplona for San Fermin (running of the bulls). We had crazy fun times there, and then I ended up meeting back up with him in London, where I stayed with him for almost a month. When I came back to the states, he came and visited me in St Louis, and we have kept in touch on and off throughout the years. He and his brother had now decided to stop in Seattle to visit during their US tour. It was great to see him again as it had been 7yrs since we had last talked face-to-face. I had a great time, showing them around Seattle to all my favorite places- it was like seven years hadn't gone by! Anyways, it was great to get to see him again and catch up- I am definitely planning a trip to Australia as soon as I graduate!
Since my last post I have also started clinicals again. I am at a family practice with two nurse practitioners at least once a week. So far it's been tough because I feel out of practice with examinations, diagnoses, etc. I don't know how long it will take to get these skills back but it is frustrating. Fortunately my preceptor is supportive and a great teacher. The problem is that her patients are so complex- way beyond my level. A guy came in the other day with a history of stroke, diabetes, asthma, and high cholesterol, and he was complaining of a constant severe headache and blood stools. That's quite a workup I did! The clinic still uses paper charts and his was like 2 inches thick! All of the patients seem to have at least 3 chronic conditions which are still in the process of stabilizing. At least I am seeing a lot of interesting cases- we just sent a lady to the ER today for possible Stevens-Johnsons syndrome- a really rare medication reaction...
Ok so back to the medical:
So I had my appointment with the radiation therapist last week. He was this nice, really straight forward guy. He also had a student with him who didn't seem to know anything. Wow I know how that feels.. Anyways, he started by explaining the role that radiation may have in my case. Basically, radiation is not the standard therapy for women with ovarian cancer. Usually they have surgery to remove the ovaries, uterus, and fallopian tubes, followed by 6 cycles of chemotherapy. pretty much what I had minus the hysterectomy. However, because I have the weird, one-in-a-million, super-aggressive and chemo-resistant clear cell type, he recommends that my treatment be a little more aggressive to be sure to rid my body of all the remaining cells. He basically gave me two options: 1.) 5 weeks of radiation to my pelvis or 2.) 9-12 months of low-dose chemotherapy. Hmmm let me think about that one. Chemo for an entire year? HELL NO! It would only be one of the drugs I was on, Taxotere, but it would still have all the regular side effects: increasing nausea, loss of my now baby-fine head of hair, incapacitating fatigue, numbness and tingling of my fingers and toes that within a year could affect my grasp and ability to write, walk, etc, murder of my red and white blood cells and platelets (making me more anemic that I already am). I can't imagine feeling shitty for an entire year- and because it was low-dose I would be getting it more frequently, meaning my side effects would increase over time.. In any case, my immediate thought was FUCK THAT so I asked the doc a little more about the radiation. He said that each session would be about 40 minutes and take place at the clinic M-F. The radiation would be aimed in an upside-down Y shape, so that it would hit my pelvic and inguinal lymph nodes. The side effects were different for everyone, but the most common with radiation to that particular area were fatigue, nausea, and diarrhea. At this point I made very clear how much nausea, how much diarrhea, etc and he said that maybe it would be 2-3 episodes of diarrhea a day and that the nausea could vary- in any case the symptoms don't usually show up until the 3rd week and get progressively worse as you approach the end. He then went through the more serious side effects, which he assured me were rare. Because the radiation was aimed at part of my intestines, it could damage the tissue and cause strictures and places where bowel could no longer pass through- causing obstruction and resultant surgery. I could also have skin damage, although this was unlikely as the beams would be aimed well below the skin. Secondary malignancies was another big one, as the radiation may actually cause other types of cancers later in life. Finally, he brought up the one that concerned me the most at this time- infertility.
As much as my oncologist doesn't agree with my decision to keep my uterus, I would still like to try to one day give birth. Therefore, I was very interested in whether or not radiation could affect the functioning of my uterus, thus affecting my ability to carry a child. Well the Dr. told me that with radiation there is always a possibility. He said that he has known several women who had carried their babies to term after pelvic irradiation. He also recognized that there would be a significant risk of damaging the blood vessels which supplied the uterus, as they are interwoven with the lymph nodes that would be targeted. He then cited several techniques where they could tuck the ovaries behind the uterus as to preserve fertility. As he said this of course I got upset, because I had no ovaries to protect (thinking again about my healthy left ovary that was removed). He assured me that he would do his best to prevent damage to my uterus, and that a detailed CT scan would be used to map out the exact placement of the beams so that they would spare as much healthy tissue as possible. He also reminded me that chemotherapy (or option #2) would best preserve my uterus. He then told me that he would make me an appointment for my detailed CT scan and mapping procedure, and in the meantime I could think over my decision. I told him that it was fine and that I would most likely go ahead with the radiation.
So there it is- I have made my decision to start radiation and am scheduled to have my CT scan tomorrow. I will most likely start my first treatments this week. I did snap a little when the receptionist called me to make the appointment- she said that before I came in for the CT scan that the MD wanted me to get a pregnancy test. When she said it I started to get really angry and asked why, as there is no way I could be pregnant. She said that as long as I could verify to her that I was really sure I couldn't be pregnant that it would be fine. I told her that I was really sure that I had no ovaries and that shut her up for a minute. I know she was just doing her job but I was angry at the doctor for obviously not taking the time to read my chart and the results of my surgery. How can you be a gynecological radiation therapist and not know the status of your patient's ovaries? Idiot. I bet it was the med student who ordered the test... Anyways, I was insulted and did not need that little reminder of my infertility. And I should be able to refuse a test if I want to. This just reminds me of the two weeks before surgery when the various doctors made me do a total of 4 pregnancy tests, including one the morning of surgery...
That's all for now.. Oregon Country Fair experiences to follow...
I had a great 4th- went to a BBQ and watched the fireworks from a balcony in Fremont. They were choreographed by a DJ set blasting out of an old-school boom box. Also complete with Michael Jackson hits in remembrance. Later that night we saw an awesome funk band and danced the night away...
I spent most of the last few weeks house sitting for a friend in an apartment a little south of downtown. I was feeding their dog (who had a mohawk) and taking advantage of living in an urban environment with a pool and hot tub on the roof of the apartment complex. Basically this meant that I spend a good portion of the day dozing off or reading Harry Potter in the sun with an occasional dip in the pool. Not a bad way to pass the time, eh?
Last week I had two visitors all the way from Australia, something which I had been looking forward to for awhile. I had met one of the guys in the train station while traveling in Barcelona, and ended up taking the train with he and his friend to Pamplona for San Fermin (running of the bulls). We had crazy fun times there, and then I ended up meeting back up with him in London, where I stayed with him for almost a month. When I came back to the states, he came and visited me in St Louis, and we have kept in touch on and off throughout the years. He and his brother had now decided to stop in Seattle to visit during their US tour. It was great to see him again as it had been 7yrs since we had last talked face-to-face. I had a great time, showing them around Seattle to all my favorite places- it was like seven years hadn't gone by! Anyways, it was great to get to see him again and catch up- I am definitely planning a trip to Australia as soon as I graduate!
Since my last post I have also started clinicals again. I am at a family practice with two nurse practitioners at least once a week. So far it's been tough because I feel out of practice with examinations, diagnoses, etc. I don't know how long it will take to get these skills back but it is frustrating. Fortunately my preceptor is supportive and a great teacher. The problem is that her patients are so complex- way beyond my level. A guy came in the other day with a history of stroke, diabetes, asthma, and high cholesterol, and he was complaining of a constant severe headache and blood stools. That's quite a workup I did! The clinic still uses paper charts and his was like 2 inches thick! All of the patients seem to have at least 3 chronic conditions which are still in the process of stabilizing. At least I am seeing a lot of interesting cases- we just sent a lady to the ER today for possible Stevens-Johnsons syndrome- a really rare medication reaction...
Ok so back to the medical:
So I had my appointment with the radiation therapist last week. He was this nice, really straight forward guy. He also had a student with him who didn't seem to know anything. Wow I know how that feels.. Anyways, he started by explaining the role that radiation may have in my case. Basically, radiation is not the standard therapy for women with ovarian cancer. Usually they have surgery to remove the ovaries, uterus, and fallopian tubes, followed by 6 cycles of chemotherapy. pretty much what I had minus the hysterectomy. However, because I have the weird, one-in-a-million, super-aggressive and chemo-resistant clear cell type, he recommends that my treatment be a little more aggressive to be sure to rid my body of all the remaining cells. He basically gave me two options: 1.) 5 weeks of radiation to my pelvis or 2.) 9-12 months of low-dose chemotherapy. Hmmm let me think about that one. Chemo for an entire year? HELL NO! It would only be one of the drugs I was on, Taxotere, but it would still have all the regular side effects: increasing nausea, loss of my now baby-fine head of hair, incapacitating fatigue, numbness and tingling of my fingers and toes that within a year could affect my grasp and ability to write, walk, etc, murder of my red and white blood cells and platelets (making me more anemic that I already am). I can't imagine feeling shitty for an entire year- and because it was low-dose I would be getting it more frequently, meaning my side effects would increase over time.. In any case, my immediate thought was FUCK THAT so I asked the doc a little more about the radiation. He said that each session would be about 40 minutes and take place at the clinic M-F. The radiation would be aimed in an upside-down Y shape, so that it would hit my pelvic and inguinal lymph nodes. The side effects were different for everyone, but the most common with radiation to that particular area were fatigue, nausea, and diarrhea. At this point I made very clear how much nausea, how much diarrhea, etc and he said that maybe it would be 2-3 episodes of diarrhea a day and that the nausea could vary- in any case the symptoms don't usually show up until the 3rd week and get progressively worse as you approach the end. He then went through the more serious side effects, which he assured me were rare. Because the radiation was aimed at part of my intestines, it could damage the tissue and cause strictures and places where bowel could no longer pass through- causing obstruction and resultant surgery. I could also have skin damage, although this was unlikely as the beams would be aimed well below the skin. Secondary malignancies was another big one, as the radiation may actually cause other types of cancers later in life. Finally, he brought up the one that concerned me the most at this time- infertility.
As much as my oncologist doesn't agree with my decision to keep my uterus, I would still like to try to one day give birth. Therefore, I was very interested in whether or not radiation could affect the functioning of my uterus, thus affecting my ability to carry a child. Well the Dr. told me that with radiation there is always a possibility. He said that he has known several women who had carried their babies to term after pelvic irradiation. He also recognized that there would be a significant risk of damaging the blood vessels which supplied the uterus, as they are interwoven with the lymph nodes that would be targeted. He then cited several techniques where they could tuck the ovaries behind the uterus as to preserve fertility. As he said this of course I got upset, because I had no ovaries to protect (thinking again about my healthy left ovary that was removed). He assured me that he would do his best to prevent damage to my uterus, and that a detailed CT scan would be used to map out the exact placement of the beams so that they would spare as much healthy tissue as possible. He also reminded me that chemotherapy (or option #2) would best preserve my uterus. He then told me that he would make me an appointment for my detailed CT scan and mapping procedure, and in the meantime I could think over my decision. I told him that it was fine and that I would most likely go ahead with the radiation.
So there it is- I have made my decision to start radiation and am scheduled to have my CT scan tomorrow. I will most likely start my first treatments this week. I did snap a little when the receptionist called me to make the appointment- she said that before I came in for the CT scan that the MD wanted me to get a pregnancy test. When she said it I started to get really angry and asked why, as there is no way I could be pregnant. She said that as long as I could verify to her that I was really sure I couldn't be pregnant that it would be fine. I told her that I was really sure that I had no ovaries and that shut her up for a minute. I know she was just doing her job but I was angry at the doctor for obviously not taking the time to read my chart and the results of my surgery. How can you be a gynecological radiation therapist and not know the status of your patient's ovaries? Idiot. I bet it was the med student who ordered the test... Anyways, I was insulted and did not need that little reminder of my infertility. And I should be able to refuse a test if I want to. This just reminds me of the two weeks before surgery when the various doctors made me do a total of 4 pregnancy tests, including one the morning of surgery...
That's all for now.. Oregon Country Fair experiences to follow...
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