Not much to report. Radiation sucks. I'm so tired that I can do about one errand a day, and that errand is to drive to radiation. I don't have any diarrhea, but I have been nauseous a few times in the last week. Kinda randomly. And I am starting to get really bad chemo brain. I'm forgetful and am having a hard time bring up words to mind when speaking. Arghhhhhhhhhhh over a week to go...
I see the radiation oncologist once a week to go over my symptoms and the progress of the treatments. At our last meeting he recommended that I do an extra 3 treatments aimed at the area over my para-aortic nodes where the highest tumor was found. I was like, whatever, what's 3 extra days going to matter? Well we'll see now cause I'm getting really tired of this.
My doctor hadn't order a CA-125 for me yet so I demanded to get it drawn last week. I feel like they have totally forgotten about me- I hadn't had the test in almost 3 month! But all is good, I got it back and it was 9! I think that is my second lowest number yet. And it had better be cause I'm not doing this double whammy preventative chemo-radiation combo for nothing!
Other than that... My sis came to visit last week. We spend a good portion of the time napping or watching movies on my bed. She was just as tired as me! We did go to Karaoke and a fun Madonna-Elvis party though. She dressed up like Like-A-Virgin Madonna in a white corset, and I did the whole cone-boob thing. They were rocking costumes! Pictures to come...
Showing posts with label radiation. Show all posts
Showing posts with label radiation. Show all posts
August 18, 2009
August 7, 2009
Radiation grind
Just been doing the grind lately: chemo on mondays, radiation monday-friday. Radiation is definitely annoying because I have to plan my day around whatever time I have to be there for the day. I don't really have a set schedule at the moment, so each day I ask what's available and show up then. It only takes 20 minutes, but it's 20 minutes to drive there. They only offer it M-F until 4:30pm as well, so I don't know what people do who have a life to work around... what if people still want to work? Not that this applies to me at all, where I concern myself around whether or not it's warm enough to go to the lake and what to make for lunch. At least I get to socialize a little more during the day (usually I am alone during the day because everyone else is at work) at radiation- I have the same 3 techs every time. One girl is super cool- she is my age and is married to a musician. She listens to the same music as me and always changes the pop-music which is playing on the ipod when I come in to her special mix. It makes the whole process just a little easier...
Chemo isn't so bad. It sucks to have to be back in the Infusion ward. I was so excited to leave that place. I even have the same nurse as before. Luckily, I don't have all the side effects this time- radiation caused much more nausea and fatigue than chemo last week. All I have now is that good ole' metallic taste that I missed so much...
Other than that not much is going on. I went to another funk show last night which was pretty awesome. I wore my long rainbow-colored striped socks with my red wig. I looked like I shoulda been in a Skittles advertisement. Anyways, this is the first time I've worn my wig in awhile. I finally have just enough hair to not wear anything- no scarf, no wig. Last week we had this record-breaking heatwave- 103 deg high- so I got used to going scarfless. It's kinda nice because my hair is really soft and my head stays cool. I never thought for the life of me that I would be sporting a supershort pixie cut.
That's it for now..my sister comes next week to visit so I can't wait for that!
Chemo isn't so bad. It sucks to have to be back in the Infusion ward. I was so excited to leave that place. I even have the same nurse as before. Luckily, I don't have all the side effects this time- radiation caused much more nausea and fatigue than chemo last week. All I have now is that good ole' metallic taste that I missed so much...
Other than that not much is going on. I went to another funk show last night which was pretty awesome. I wore my long rainbow-colored striped socks with my red wig. I looked like I shoulda been in a Skittles advertisement. Anyways, this is the first time I've worn my wig in awhile. I finally have just enough hair to not wear anything- no scarf, no wig. Last week we had this record-breaking heatwave- 103 deg high- so I got used to going scarfless. It's kinda nice because my hair is really soft and my head stays cool. I never thought for the life of me that I would be sporting a supershort pixie cut.
That's it for now..my sister comes next week to visit so I can't wait for that!
July 31, 2009
Radiation Prep & Procedures.. and the NEW plan
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!!!
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 14, 2009
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...
March 31, 2009
Spring Break unexcitement
I haven't written in awhile because I am have been back in Urbana, Illinois for my spring break. The weeks before finals I had a random idea to spend 5 days in Hawaii. Tickets were cheap, but I had never been and had no idea where to look for a place. I put it off and by the beginning of finals week they had gone way up. I would have gone but it was stressful just finding a place to stay- I had no idea what island to go to and what hotels/hostels were good. But then my mom got sick so I changed my plans and tried my hardest to get a flight last Monday. No luck- I tried to get charity fares but there was nothing for a week. What's the point of that?!? Damn spring break. I finally forked out 600 bucks to fly out on Wednesday. I missed my first flight which made me miss the last flight to Urbana and so I had to take the bus home. Ugh. Sooo boring. But I finally made it home. My sis was up with her bf and he had shaved his head for me! My sis was pissed but her looked good. Anyways, it was nice to see my sis and all but I was completely focused on my mom...
So last week (morning of finals of course) my mom went to the ER with a really bad cough and some confusion/dizziness. Apparently on the way to work she was swerving a bit and actually got pulled over for it. She went to work anyways and her co-workers got her to go to the ER. Turns out she has bilobar pneumonia. The next day she was on a ventilator and had an SatO2 of 85% or something. I was freaking out and so that's why I tried to fly home early. I had no idea how bad it was until I got to the hospital. She looked AWFUL. She was heavily sedated and on high flow oxygen and two antibiotics. Her hands and feet were badly swollen, as well as her neck. What was really awful was seeing her tongue- it was hard from hanging out of her mouth for days. I cried when I saw her and had to leave the hospital after about 20 minutes.
The next day I saw her and she had developed a fungal infection and some sores on her legs. The doctor said she was getting worse and I asked the nurse to see her xray. Of course the first one said she couldn't show me because of HIPAA. The next one was like no big deal and showed us. I couldn't believe it- I remember seeing xrays in clinical and my patients had just little spots in their lobes. My mom had at least 70% of BOTH lungs full of crap. The whole xray was white.
It was hard for my dad and I not be the annoying family member trying to control her care. The docs couldn't culture anything from lungs or blood. We both got online and researched what could be going on and came up with a hypothesis that she could have legionella. I guess it doesn't always culture out unless you do a special test. This was plausible because she's a florist and spends a lot of time in the cooler which could house Legionella. Anyways, both of us had a lot of questions and probably annoyed the crap out of the doctor. I think they deserved it though- I guess her first doctor rotated with another one every week. As soon as the new one came on her ordered a bronchoscopy to check out her lungs. I guess they were full of pus and he was able to flush out a lot of it. Anyways I was pissed because the first doctor could have done this. She also didn't have compression boots on which bothered me. They were giving her heparin though so that was why. Should you have both? I guess I was most concerned that when she did get through this that she was at risk for clots. This totally bothered me...I was hoping that she would be off the vent some time while I was home but he said that she would probably be on the vent for 4-6wks! So upsetting because all I wanted to do was talk to her. At least have her know I was there.
The rest of the time at home was ok- I hung out with my sister and her boyfriend mostly. The house was pretty weird without my mom around. Pretty depressing. My sister's coworkers wouldn't cover for her so she had to work a little while I was home. She also had an orgo test the day I had my flight home so she had to study as well. Definitely a horrible spring break for the both of us. We did have some fun though- we all had a night trying on the wigs. My dad looked hilarious! My best friend from high school, Eleza, also came to visit from Chicago for a night. We went out to check out all the new bars. Of course we ran into someone from high school.. weird cause she didn't recognize me with the wig- something which I always forget. Feels the same to me, ya know!
Well miraculously my mom started getting better on Monday. Her lungs were clearing and the doctor predicted that she might be off her vent Tuesday or Wednesday. They also were reducing her sedation. All I wanted was for her to be off the damn thing before I left. Well she wasn't. That's probably what bothers me the most. I went to see her yesterday morning and she actually opened her eyes! I made her a picture collage and so I got to show her that. She most likely won't remember me being there which is sad, but at least I got to see her getting better. She looked better- the swelling had gone down and her lungs were only diminished in the bases which was awesome! She didn't respond much while I was there except she shook her head at the nurses when they asked her if she had any pain. It was nice to see her eyes open and know that she at least somewhat knew I was there.
So I got home yesterday with little sleep and after a 2 hours delayed flight. (Never fly through Ohare in the winter or spring). I went straight to bed and slept for almost 24hrs (with the help of some ambien). When I awoke there were at least 8 missed calls from my sis and dad- apparently my mom had a mini-stroke. Exactly what I was worried about the whole time. I guess they did their neuro check and she had reduced grip strength in her right hand, as well as an inability to raise her right foot. She also was tracking her eyes to the right. They did a CT scan which showed a small stroke in the left hemisphere in the Wernicke area. There was also a lot of inflammation. The Wernicke area (I remember this from psych classes) is the part of the brain that processes speech. So the docs and all of us were really worried that she may have problems understanding language. They were confused, however, because usually strokes in one side of the brain produce deficiencies in the opposite side. They ordered a MRI scan and as of right now the neuro doc hasn't told us the results... My dad and sister did say that earlier she had some left sided weakness as well which had resolved a little. She also could track her eyes to the left. So she sounds like she's doing better. My sister went in and was talking to her and she responded by trying to speak a little . She also was moving around a lot and could dangle her legs. It's unclear whether she has language deficits because she won't be able to speak for a week or so because her vocal cords are pretty swollen and inflamed from the tube. I remember how that feels- I was on a vent during my 3 hours surgery and the next day I was hoarse and it hurt pretty bad to swallow and speak. I wonder what a week and a 1/2 feels like it... My sister thinks my mom will recover just fine after seeing her this morning. I love the positivity- DAD YOU SHOULD be more positive! ;) My mom got better fast and so I think she will recover functioning soon. The only thing she will have to worry about is the fatigue and I have no pointers about that except maybe stealing some Adderral...
So that's my current update. I flew home to see my mom and she will be soooooo pissed that she missed me. I guess I will have to fly her out! I totally want to sue the ER doctor for not doing a chest xray. They could have caught this so much sooner and maybe she wouldn't have even had to be admitted to the ICU. Fuck that. Doctors can be so cocky. Cover your ass. The Urgent Care clinic I worked at sent anyone with a bad cough to get an xray even before they saw the doctor!
You would think that if someone is dizzy and losing cognition that it would alert them to the fact that her cough is serious! Make me want to be a better practitioner. I think that's what I have learned the most from all of this and from my own experience being the patient. Get advice and consult with other practitioners because it's so easy to make mistakes and only think inside the box. And make sure you are available. At least I am getting something from all of this.
I think my luck is on the upside. Finally. It seems to come in threes and this whole mom thing completes the series. (I'm counting our rental house going under foreclosure as number one). The last bout of bad luck started at the same time in 2007- Within 3 months I got kicked out of school, kicked out of my house, and let go from my job... I should totally play the lottery!
Oh and speaking of good luck- when I got home I had a pile of medical bills (which finally came).The first letter was from Basic Health insurance saying that they had looked over my MRI request again and approved it! It was denied previously because Country Doctor didn't send them all the required information. This had started a world of worry because that was actually the ONLY thing that I had asked my primary care doctor to refer me too- Everything else I self-referred, including the surgery which they COULD deny if they were assholes because it wasn't pre-approved. Well I opened at least 3 more bills that showed that my insurance had been billed for all the specialty services and tests that I had received. I guess the lifetime limit on the insurance was only $1500! I'm guessing without insurance this whole thing may be $100,000 so that was awesome too. Finally, the best news was that the SCCA had approved my application for charity care. They determined that they would take on 100% of my responsibility towards my bill on June 25th. I guess that means anything that I didn't pay by then. How awesome is that! I don't know exactly what that means- like will they pay for stuff now- but that is still awesome news! I'm hoping that it will pay for the surgery with the 20% coinsurance because the UW is linked to the clinic. Otherwise that bill is going to be enormous!
Well I am starting classes tomorrow again and so I gotta study. I feel pretty good right now. Monday is treatment # 3. It's not for sure because if my counts are low than I will have to delay it. I missed my blood test this past Monday and so I'm not sure what they are. I will probably get another tomorrow. I'm supposed to talk with the doctor after the 3rd treatment so that will be good. She wants me to do radiation and another surgery to remove my uterus and I have decided not to do both. I guess I don't understand the point of irradiating my whole abdomen when they don't' even know if the cancer is still there. How do you target a few little clear cells? I probably will get another CT scan though which will tell me. They only did my abdomen and pelvis last time which I think is stupid because it could be anywhere considering it traveled through the bloodstream. I'm going to demand it. Not that I really want to know. I haven't asked about my CA-125 results as I don't really want to know those either. I will get them on Monday regardless.
Well wish me luck. I will write more now that I'm back on the computer for school. Break was sure nice without my cellphone on me and very little email checking! So nice to escape technology sometimes... (although TV was a dominant factor at home).
Amber
So last week (morning of finals of course) my mom went to the ER with a really bad cough and some confusion/dizziness. Apparently on the way to work she was swerving a bit and actually got pulled over for it. She went to work anyways and her co-workers got her to go to the ER. Turns out she has bilobar pneumonia. The next day she was on a ventilator and had an SatO2 of 85% or something. I was freaking out and so that's why I tried to fly home early. I had no idea how bad it was until I got to the hospital. She looked AWFUL. She was heavily sedated and on high flow oxygen and two antibiotics. Her hands and feet were badly swollen, as well as her neck. What was really awful was seeing her tongue- it was hard from hanging out of her mouth for days. I cried when I saw her and had to leave the hospital after about 20 minutes.
The next day I saw her and she had developed a fungal infection and some sores on her legs. The doctor said she was getting worse and I asked the nurse to see her xray. Of course the first one said she couldn't show me because of HIPAA. The next one was like no big deal and showed us. I couldn't believe it- I remember seeing xrays in clinical and my patients had just little spots in their lobes. My mom had at least 70% of BOTH lungs full of crap. The whole xray was white.
It was hard for my dad and I not be the annoying family member trying to control her care. The docs couldn't culture anything from lungs or blood. We both got online and researched what could be going on and came up with a hypothesis that she could have legionella. I guess it doesn't always culture out unless you do a special test. This was plausible because she's a florist and spends a lot of time in the cooler which could house Legionella. Anyways, both of us had a lot of questions and probably annoyed the crap out of the doctor. I think they deserved it though- I guess her first doctor rotated with another one every week. As soon as the new one came on her ordered a bronchoscopy to check out her lungs. I guess they were full of pus and he was able to flush out a lot of it. Anyways I was pissed because the first doctor could have done this. She also didn't have compression boots on which bothered me. They were giving her heparin though so that was why. Should you have both? I guess I was most concerned that when she did get through this that she was at risk for clots. This totally bothered me...I was hoping that she would be off the vent some time while I was home but he said that she would probably be on the vent for 4-6wks! So upsetting because all I wanted to do was talk to her. At least have her know I was there.
The rest of the time at home was ok- I hung out with my sister and her boyfriend mostly. The house was pretty weird without my mom around. Pretty depressing. My sister's coworkers wouldn't cover for her so she had to work a little while I was home. She also had an orgo test the day I had my flight home so she had to study as well. Definitely a horrible spring break for the both of us. We did have some fun though- we all had a night trying on the wigs. My dad looked hilarious! My best friend from high school, Eleza, also came to visit from Chicago for a night. We went out to check out all the new bars. Of course we ran into someone from high school.. weird cause she didn't recognize me with the wig- something which I always forget. Feels the same to me, ya know!
Well miraculously my mom started getting better on Monday. Her lungs were clearing and the doctor predicted that she might be off her vent Tuesday or Wednesday. They also were reducing her sedation. All I wanted was for her to be off the damn thing before I left. Well she wasn't. That's probably what bothers me the most. I went to see her yesterday morning and she actually opened her eyes! I made her a picture collage and so I got to show her that. She most likely won't remember me being there which is sad, but at least I got to see her getting better. She looked better- the swelling had gone down and her lungs were only diminished in the bases which was awesome! She didn't respond much while I was there except she shook her head at the nurses when they asked her if she had any pain. It was nice to see her eyes open and know that she at least somewhat knew I was there.
So I got home yesterday with little sleep and after a 2 hours delayed flight. (Never fly through Ohare in the winter or spring). I went straight to bed and slept for almost 24hrs (with the help of some ambien). When I awoke there were at least 8 missed calls from my sis and dad- apparently my mom had a mini-stroke. Exactly what I was worried about the whole time. I guess they did their neuro check and she had reduced grip strength in her right hand, as well as an inability to raise her right foot. She also was tracking her eyes to the right. They did a CT scan which showed a small stroke in the left hemisphere in the Wernicke area. There was also a lot of inflammation. The Wernicke area (I remember this from psych classes) is the part of the brain that processes speech. So the docs and all of us were really worried that she may have problems understanding language. They were confused, however, because usually strokes in one side of the brain produce deficiencies in the opposite side. They ordered a MRI scan and as of right now the neuro doc hasn't told us the results... My dad and sister did say that earlier she had some left sided weakness as well which had resolved a little. She also could track her eyes to the left. So she sounds like she's doing better. My sister went in and was talking to her and she responded by trying to speak a little . She also was moving around a lot and could dangle her legs. It's unclear whether she has language deficits because she won't be able to speak for a week or so because her vocal cords are pretty swollen and inflamed from the tube. I remember how that feels- I was on a vent during my 3 hours surgery and the next day I was hoarse and it hurt pretty bad to swallow and speak. I wonder what a week and a 1/2 feels like it... My sister thinks my mom will recover just fine after seeing her this morning. I love the positivity- DAD YOU SHOULD be more positive! ;) My mom got better fast and so I think she will recover functioning soon. The only thing she will have to worry about is the fatigue and I have no pointers about that except maybe stealing some Adderral...
So that's my current update. I flew home to see my mom and she will be soooooo pissed that she missed me. I guess I will have to fly her out! I totally want to sue the ER doctor for not doing a chest xray. They could have caught this so much sooner and maybe she wouldn't have even had to be admitted to the ICU. Fuck that. Doctors can be so cocky. Cover your ass. The Urgent Care clinic I worked at sent anyone with a bad cough to get an xray even before they saw the doctor!
You would think that if someone is dizzy and losing cognition that it would alert them to the fact that her cough is serious! Make me want to be a better practitioner. I think that's what I have learned the most from all of this and from my own experience being the patient. Get advice and consult with other practitioners because it's so easy to make mistakes and only think inside the box. And make sure you are available. At least I am getting something from all of this.
I think my luck is on the upside. Finally. It seems to come in threes and this whole mom thing completes the series. (I'm counting our rental house going under foreclosure as number one). The last bout of bad luck started at the same time in 2007- Within 3 months I got kicked out of school, kicked out of my house, and let go from my job... I should totally play the lottery!
Oh and speaking of good luck- when I got home I had a pile of medical bills (which finally came).The first letter was from Basic Health insurance saying that they had looked over my MRI request again and approved it! It was denied previously because Country Doctor didn't send them all the required information. This had started a world of worry because that was actually the ONLY thing that I had asked my primary care doctor to refer me too- Everything else I self-referred, including the surgery which they COULD deny if they were assholes because it wasn't pre-approved. Well I opened at least 3 more bills that showed that my insurance had been billed for all the specialty services and tests that I had received. I guess the lifetime limit on the insurance was only $1500! I'm guessing without insurance this whole thing may be $100,000 so that was awesome too. Finally, the best news was that the SCCA had approved my application for charity care. They determined that they would take on 100% of my responsibility towards my bill on June 25th. I guess that means anything that I didn't pay by then. How awesome is that! I don't know exactly what that means- like will they pay for stuff now- but that is still awesome news! I'm hoping that it will pay for the surgery with the 20% coinsurance because the UW is linked to the clinic. Otherwise that bill is going to be enormous!
Well I am starting classes tomorrow again and so I gotta study. I feel pretty good right now. Monday is treatment # 3. It's not for sure because if my counts are low than I will have to delay it. I missed my blood test this past Monday and so I'm not sure what they are. I will probably get another tomorrow. I'm supposed to talk with the doctor after the 3rd treatment so that will be good. She wants me to do radiation and another surgery to remove my uterus and I have decided not to do both. I guess I don't understand the point of irradiating my whole abdomen when they don't' even know if the cancer is still there. How do you target a few little clear cells? I probably will get another CT scan though which will tell me. They only did my abdomen and pelvis last time which I think is stupid because it could be anywhere considering it traveled through the bloodstream. I'm going to demand it. Not that I really want to know. I haven't asked about my CA-125 results as I don't really want to know those either. I will get them on Monday regardless.
Well wish me luck. I will write more now that I'm back on the computer for school. Break was sure nice without my cellphone on me and very little email checking! So nice to escape technology sometimes... (although TV was a dominant factor at home).
Amber
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