Wow. I just realized that I missed a month.
I went to my gyn onc appointment and had a quick exam. Everything had been healing well and I was only having a little bladder pain during the exam. She then discussed what she found in surgery. My tumor was, of-course- unusual. Again another reason why my outcome is completely unpredictable. The tumor itself was lightly attached to my bladder and so she didn't have to removed much bladder tissue and muscle. It was also still encapsulated- meaning that the malignant tissue was completely enclosed in normal tissue- something that was completely unexpected. Because of this all fluid washes and other biopsies were negative. Altogether the surgery went very well. Some of the malignant tissue was sent to pathology for future testing.
We then talked about the next step. I had a lot to say and a ton of questions after attending the OC Symposium a few months ago- mainly on new treatments and monitoring measures. After all my reservations about chemotherapy, we agreed that it would be the best option. Why did I change my mind? People may think it's a silly reason, but the new drugs wouldn't cause me to lose my hair. This is a little-talked about concern in cancer research, but really should be addressed. Hair is everything. I'm not one to always care about my appearance- evident by passing on makeup, nice clothes, etc- but losing my hair was just an experience that I don't want to repeat. It's so weird being bald with no eyebrows or lashes. I didn't feel like a woman- more like an undesirable alien life form. I know that this goes against previous posts and the title of this blog, but I don't care. It was ok the first time but now...
The chemo drugs that we discussed were using carboplatin again, with possibly Doxorubicin or Avastin. However, there are many factors that will determine which drug to use. To start, it is unclear whether this tumor was considered platinum drug resistant. Drug-resistance is defined as whether there is a relapse-free interval longer than 6 months. Considering that my tumor was undiscovered until last summer & possibly felt on follow-up examinations prior to that, my interval is unclear. Therefore it's hard to tell whether my prolonged Carboplatin therapy was actually effective.
As a side note: my doctor also mentioned that the bladder area had received significantly less radiation than the rest of my abdomen. Most of the beams were focused on my para-aortic nodes, because this was were the cancer had spread. All of this means that radiation may have been effective because there was no evidence of cancer in that area.
The tissue that was sent to pathology, was apparently being tested for drug sensitivity. I provided a link an article about this on my 11/19/10 post. This is a new method of treatment- offering patients more personalized treatment based on actually cell studies. I was excited to find that this was an option for me. Unfortunately, at the time of my appointment, my tumor cells had not grown to a sufficient size to begin testing. Even now, 6 weeks later, the damn tumor is so slow-growing that the lab hasn't contacted my doctor with the results. This really makes a case that the tumor was present much earlier than diagnosed. It also means that I will not start treatment until we have these results. However, because the tumor is growing so slowly, there is really no rush to start empirical treatment with the past-drug regimen.
Another thing we discussed was the CA-125 test. Clearly I could no longer rely on this test because my values had been normal despite having a recurrence. So how else could I monitor the effectiveness of treatment? My doctor said really the only way was more CT scans, but this time every 6 months.
At the end of the visit I asked about outcomes. Already knowing the answer, I asked her whether my cancer will be a chronic problem for me. Most-likely yes. She said that due to the kind of cancer (clear cell) it was pretty likely that it would recur. I asked about what then and about more surgeries, and she said that with my good health that could always be an option. She did offer some hope though: everything about my cancer- age of diagnosis, odd spread pattern, clear cell type, and the characteristics of the new tumor (encapsulation & it's slow-growth) - made my case completely unpredictable. She did say that she still had hope for a cure. With all the new research, scientists are coming closer and closer to developing a cure. Most drugs would probably become available to patients in the next five years, and she was hopeful that I would still be around by then. It may be five years of frustration, but five years I can hopefully remain strong and deal with
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
December 27, 2010
November 19, 2010
Night and Day
Aha I figured out how to switch my blog from one google account to another! and it's not easy!!!
Just thought I'd give a quick check up- you know, the post before the BIG life-changing-thoughtful post that I may have at like 5:36am within the next week or so... It's a touchy science like earthquake prediction :| (Seattle is due for a big one!!! or so they have been saying for weeks now)
I'm feeling ok & off the narcs. And no you can't have any because I may need them for a headache some day ;). So stop asking. The other day I did wake up in pain, at 10am. Although I was super excited to be awake in the am. for once, I had to take a Dilaudid and slept until the afternoon anyways. I guess I can't sleep on my left side. Maybe because the remaining organs on my the right side are stapled or clipped in place and that stretches them?
My sleep schedule is wrecked again. I'm in full on vampire mode. What's funny is that in my house I'm rarely even the last one to get up.... at 4pm! I love the upstairs people: we love sleep and we only see the sunrise as we close our blinds and stumble off to bed ;) Wait! Sun in Seattle?
Ok I'm getting slap-happy cause it's 3:38am. I better re-focus. I have a doctor's appointment at 9am on the 8th. No I did not make that appointment. I think I may have to stay up all night to be up in time for that. SCCA should know me by now- I was always the last blood draw of the evening, in the last radiation therapy spot of the day, and had to reschedule chemo once or twice because I couldn't make my 1pm appointments. I am ridiculous but at least I know my body well enough to know what times to avoid!
I'm not sure what the treatment plan is going to be. Chemo? Radiation? Both? None? Honestly people keep asking me what I'm going to do next and I have to almost remind myself what they are talking about. It's weird how right now it's on the back of my mind, and when some people see me it's the only thing they can think about.....
My steri-strips are off and the incision scar will not be pretty. This time I'm definitely gonna have to get that tattoo. Still deciding of what....
I watched a Grey's Anatomy tonight about all the residents doing the night shift- reminds me of my life right now. On the show the lead characters work separate surgery shifts- as the alarm goes off for the male lead, the female character is just crawling into bed. There are nights when I know what time it is when 1.) the garbage men come and a little later 2.) my roommate's (the one who occasionally has to get up earlier than 2pm for work) alarm going off. Those nights suck.
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
March 19, 2009
post-chemo ughs
Ok now I'm feeling crappy. I'm not really nauseous but my stomach feels off. My ring finger on my right hand is numb. My underside of my right knee cap aches and both sides of my neck are sore from the port. I've been popping Percocets which helps a little, but I can't sleep on my favorite side. And of course, I'm fatigued and have no appetite. Except for my roommates' choco-peanut cookies and my power smoothies. Somehow I have to study for finals but I just want to lay around. Damn you cancer for your horrible timing...
March 17, 2009
Pic of my Powerport, i.e. third nipple
I took these right after the surgery and forgot to add them- the first one you can kind of see the vein (which i can palpate) sticking out. It's not a bruised now but I still have the steri-strips on
PowerPorts
The PowerPort* Implantable Port is a cylinder with a hollow space inside that is sealed by a soft top. It connects to a small, flexible tube called a catheter. When a special needle is put into the soft top of the PowerPort* device, it creates "access" to your bloodstream, meaning that medications and fluids can be given and blood samples withdrawn.
Several distinctive features that can be seen and felt help to identify the special design of the PowerPort* device for power-injected CECT scans. These features include a unique triangle shape and a unique triangular arrangement of three bumps called Palpation Points on the soft top of the port.
For power-injected CECT scans, the PowerPort* device is used with a needle designed especially for power injection called the PowerLoc* Safety Winged Infusion Set.
Chemo, round two
Ok so this blog is a major distractor. I would much rather write on this than study hypothyroidism... I've never been a really good about writing in my journal, but I guess this has a broader purpose.
Yesterday at 8am I arrived at SCCA to get my port placed. The doc who did was really cool- he showed me exactly where he would thread the catheter and took the time to examine my chest for the best placement. He was concerned about where my bra strap would hit the port and so ended up placing it way to my left side near my armpit. He did an ultrasound first, which was pretty cool because for once I actually saw what I was supposed to. At Planned Parenthood I'm supposed to be looking for the yolk sac pre and post-abortion and it's just this mini circle with a dot inside. The ultrasound of my ovary was just a big black blob. This ultrasound clearly showed my vein and my artery- I could see the valve in my vein flapping around, and in the artery I could see blood/cells flowing through it. Pretty cool. The doc also told me something vague about how Dr. Hickman (of the Hickman central line) liked the way that the carotid artery and jugular vein "kissed" or touched each other and I could see clearly that they did. After the US I was given a light sedative and pain killer and was moved to the operation table. They gave me an oxygen nasal cannula and placed the ultrasound machine next to the bed. I was draped on my left side so that I couldn't see what was going on- yet there was a hole cut out for me on the right so I could communicate with my nurse. I dozed off and when I woke up it was placed! But then because of the narcotics I started to get really really itchy and spent the next 15 min scratching at my neck. Apparently I can't have IV narcotics without this side effect- same thing that happened in the hospital. They called it an allergy, but I'm not sure if it is or if it's just a side effect. Well despite my plans to not sleep this whole time, I got 25mg of Benadryl anyways and began to space out. I looked at my chest and there was a small incision near my jugular and another one underneath my clavicle where the port was placed under the skin. The actual catheter is very close to the skin and feels like a hard spaghetti noodle going from my port to the vein. Basically, it looks like I have a third nipple. They got me a low profile one but it still sticks out almost 3/4 inch. And while it doesn't get irritated from my bra, I keep rubbing up on it with my backpack!
After the insertion I went to get the chemo. There they gave me a printout of my lab results. Unlike last week my hematocrit was slightly lower and my neutrophils were 0.99. I asked what the least amount you could have before having to skip chemo, and the nurse said that the numbers were fine and started the pre-chemo process. This time I took my meds orally, and because I had already had 24mg of Benadryl, I didn't have to have anymore. So this time I was able to sit up for awhile and do some crosswords, as well as eat my usual 8 packs of oreos. Of course eventually I put the bed down for a nap... I mean, I had been there since 8am that morning and had to stay until 6pm!
During the visit I asked to speak to my designated nurse. She came down and we went over how I could change up my meds to keep me a little more functional. She said that I could decrease my dextamethasone and skip the compazine. Sounds good to me! The chaplain also came in again and talked to me for quite awhile. This time I was more awake and actually didn't mind talking to her. She basically is like a therapist who comes in to chat while you are sitting there bored. Better than trash TV. She asked me how everything was going and how I thought about this whole situation. I told her exactly what I have thought since I was diagnosed: this is all a huge inconvenience. Just one more annoying thing that I have to get through while trying to finish school. Just like 6 months ago when I suddenly had to move due to my rental house being foreclosed. Just like taking a year off when I first started this program. Just like never having any money. Other than that, I don't really think about the bad stuff. Everyone tells me that I am so positive and taking everything so well. Well first of all, I don't think there is really any other way to take it. I can't sit around all day and give up. What I really think has given me so much strength is my mental illness. Since I was 16 I have had bipolar disorder- basically meaning that I constantly cycle ups and downs. I've been depressed for almost half my life, so I know when things are at their worst. But I also know that it always get better eventually. So that's 12 yrs of experience dealing with shitty times. Having cancer is just another shitty thing that I will have to climb out of. The weird thing is that I think I'm a more positive person now than I have ever been. I still have my usually rain cloud that follows me around (I think Eeyore and I have a lot in common) but it comes with a new perspective.
As for today, I woke up from a call from my nurse, saying that I actually wasn't supposed to get chemo yesterday because my counts were too low. Interesting since I specifically asked the nurse about the cutoff. Apparently it's 1.5 so I'm way below the limit. So to get my neutrophils up I had to go back to the clinic for a neulasta shot. Apparently it can boost my counts in about an hour. Anyways, I found some info on drugs.com:
Yesterday at 8am I arrived at SCCA to get my port placed. The doc who did was really cool- he showed me exactly where he would thread the catheter and took the time to examine my chest for the best placement. He was concerned about where my bra strap would hit the port and so ended up placing it way to my left side near my armpit. He did an ultrasound first, which was pretty cool because for once I actually saw what I was supposed to. At Planned Parenthood I'm supposed to be looking for the yolk sac pre and post-abortion and it's just this mini circle with a dot inside. The ultrasound of my ovary was just a big black blob. This ultrasound clearly showed my vein and my artery- I could see the valve in my vein flapping around, and in the artery I could see blood/cells flowing through it. Pretty cool. The doc also told me something vague about how Dr. Hickman (of the Hickman central line) liked the way that the carotid artery and jugular vein "kissed" or touched each other and I could see clearly that they did. After the US I was given a light sedative and pain killer and was moved to the operation table. They gave me an oxygen nasal cannula and placed the ultrasound machine next to the bed. I was draped on my left side so that I couldn't see what was going on- yet there was a hole cut out for me on the right so I could communicate with my nurse. I dozed off and when I woke up it was placed! But then because of the narcotics I started to get really really itchy and spent the next 15 min scratching at my neck. Apparently I can't have IV narcotics without this side effect- same thing that happened in the hospital. They called it an allergy, but I'm not sure if it is or if it's just a side effect. Well despite my plans to not sleep this whole time, I got 25mg of Benadryl anyways and began to space out. I looked at my chest and there was a small incision near my jugular and another one underneath my clavicle where the port was placed under the skin. The actual catheter is very close to the skin and feels like a hard spaghetti noodle going from my port to the vein. Basically, it looks like I have a third nipple. They got me a low profile one but it still sticks out almost 3/4 inch. And while it doesn't get irritated from my bra, I keep rubbing up on it with my backpack!
After the insertion I went to get the chemo. There they gave me a printout of my lab results. Unlike last week my hematocrit was slightly lower and my neutrophils were 0.99. I asked what the least amount you could have before having to skip chemo, and the nurse said that the numbers were fine and started the pre-chemo process. This time I took my meds orally, and because I had already had 24mg of Benadryl, I didn't have to have anymore. So this time I was able to sit up for awhile and do some crosswords, as well as eat my usual 8 packs of oreos. Of course eventually I put the bed down for a nap... I mean, I had been there since 8am that morning and had to stay until 6pm!
During the visit I asked to speak to my designated nurse. She came down and we went over how I could change up my meds to keep me a little more functional. She said that I could decrease my dextamethasone and skip the compazine. Sounds good to me! The chaplain also came in again and talked to me for quite awhile. This time I was more awake and actually didn't mind talking to her. She basically is like a therapist who comes in to chat while you are sitting there bored. Better than trash TV. She asked me how everything was going and how I thought about this whole situation. I told her exactly what I have thought since I was diagnosed: this is all a huge inconvenience. Just one more annoying thing that I have to get through while trying to finish school. Just like 6 months ago when I suddenly had to move due to my rental house being foreclosed. Just like taking a year off when I first started this program. Just like never having any money. Other than that, I don't really think about the bad stuff. Everyone tells me that I am so positive and taking everything so well. Well first of all, I don't think there is really any other way to take it. I can't sit around all day and give up. What I really think has given me so much strength is my mental illness. Since I was 16 I have had bipolar disorder- basically meaning that I constantly cycle ups and downs. I've been depressed for almost half my life, so I know when things are at their worst. But I also know that it always get better eventually. So that's 12 yrs of experience dealing with shitty times. Having cancer is just another shitty thing that I will have to climb out of. The weird thing is that I think I'm a more positive person now than I have ever been. I still have my usually rain cloud that follows me around (I think Eeyore and I have a lot in common) but it comes with a new perspective.
As for today, I woke up from a call from my nurse, saying that I actually wasn't supposed to get chemo yesterday because my counts were too low. Interesting since I specifically asked the nurse about the cutoff. Apparently it's 1.5 so I'm way below the limit. So to get my neutrophils up I had to go back to the clinic for a neulasta shot. Apparently it can boost my counts in about an hour. Anyways, I found some info on drugs.com:
Neulasta is a colony stimulating factor. It is a man-made form of a protein (amino acid) that stimulates the bone marrow and promotes the growth of white blood cells called neutrophils in your body. White blood cells help your body fight against infection.
Neulasta is used to treat neutropenia, a lack of certain white blood cells caused by receiving cancer chemotherapy. Neulasta is used in people with cancers other than bone marrow cancer
Other than that, I'm feeling ok- I am just taking oxy for the pain, a smaller dose of the steroid, and my usual handful of meds and supplements. I'm also trying to study, or was, until I got on this blog. Oh well. Perspective.March 15, 2009
Ready for round 2
So not much is going on. I have a final next week on Friday that I'm worried about, and it doesn't help that I have chemo tomorrow. I figure I'll be out for about 3 days and then have a few more to study. I tried doing some this weekend but I didn't get too far. I also have about 10 late assignments to work on- I think I may be doing those over break :(. Oh well, I'll just take it one day at a time...
Tomorrow I get my port placed, for which they put me under. It also means that tonight I have use the special soap to clean my chest (chlorhexadrine I think?) and not eat anything after midnight. The plan is: wake up way too early at 7:45 for blood work, 8:00 have minor surgery; and 1pm-ish? start chemo. Nice long day of laying around, eating oreos, and visiting the bathroom about 20 times. I'm hoping they can get me a children's port, because I have no fat on my chest and it's going to be huge and stick out inches. No low-cut shirts for awhile I guess. It's ok though cause I'm a t-shirt gal anyways.
I'm starting to like the bald thing. My head gets super cold at night and so I wear a hat, but otherwise it's nice. It'll be great in the summer. Yesterday I wore my long, wavy reddish wig. It was awesome to sport full flowing hair for once. I was trying to figure out if I could pass it off as natural- nobody stared at me so maybe that's a sign? I was just happy to be able to wear pigtails again- I think that's the only thing I miss about my hair at the moment. A friend of mine suggest that his roommate henna my head. That would be awesome! I'm going to wait until it all falls out because right now it's still pretty patchy.
Altogether, I'm feeling ok. Adderral has helped tremendously with the fatigue- I forgot to take it on Thursday at clinical and actually was so tired that I had to leave early. That says a lot because I love working at Planned Parenthood. My tinglies are no longer noticeable, or else I have gotten used to them. I think I only had them for 3 days or so. Weird. One new thing that's driving me nuts is the orthostatic hypotension. Basically, every time I lean back to stretch (which I always do to stretch my newly-healed ab muscles), stand up quickly, or sit up from bending over (to tie a shoe or something) I get incredibly lightheaded and have to hang onto something to prevent myself from fainting. A few times I almost have. I've had low blood pressure my whole life and have fainted from it in the past- but this is pretty much every time. I want to start hot yoga again but I will have to take it extra easy so I don't pass out during a back bend and knock somebody out!
On another note, my buddy Adam that I met at the SCCA just finished his last round of chemo! Wish him a speedy recovery! He has a blog too that you should check out (he's the one who gave me the idea). The address is: http://adamsbulletinboard.blogspot.com/
Alright enough procrastinating and back to the books!
Tomorrow I get my port placed, for which they put me under. It also means that tonight I have use the special soap to clean my chest (chlorhexadrine I think?) and not eat anything after midnight. The plan is: wake up way too early at 7:45 for blood work, 8:00 have minor surgery; and 1pm-ish? start chemo. Nice long day of laying around, eating oreos, and visiting the bathroom about 20 times. I'm hoping they can get me a children's port, because I have no fat on my chest and it's going to be huge and stick out inches. No low-cut shirts for awhile I guess. It's ok though cause I'm a t-shirt gal anyways.
I'm starting to like the bald thing. My head gets super cold at night and so I wear a hat, but otherwise it's nice. It'll be great in the summer. Yesterday I wore my long, wavy reddish wig. It was awesome to sport full flowing hair for once. I was trying to figure out if I could pass it off as natural- nobody stared at me so maybe that's a sign? I was just happy to be able to wear pigtails again- I think that's the only thing I miss about my hair at the moment. A friend of mine suggest that his roommate henna my head. That would be awesome! I'm going to wait until it all falls out because right now it's still pretty patchy.
Altogether, I'm feeling ok. Adderral has helped tremendously with the fatigue- I forgot to take it on Thursday at clinical and actually was so tired that I had to leave early. That says a lot because I love working at Planned Parenthood. My tinglies are no longer noticeable, or else I have gotten used to them. I think I only had them for 3 days or so. Weird. One new thing that's driving me nuts is the orthostatic hypotension. Basically, every time I lean back to stretch (which I always do to stretch my newly-healed ab muscles), stand up quickly, or sit up from bending over (to tie a shoe or something) I get incredibly lightheaded and have to hang onto something to prevent myself from fainting. A few times I almost have. I've had low blood pressure my whole life and have fainted from it in the past- but this is pretty much every time. I want to start hot yoga again but I will have to take it extra easy so I don't pass out during a back bend and knock somebody out!
On another note, my buddy Adam that I met at the SCCA just finished his last round of chemo! Wish him a speedy recovery! He has a blog too that you should check out (he's the one who gave me the idea). The address is: http://adamsbulletinboard.blogspot.com/
Alright enough procrastinating and back to the books!
March 11, 2009
Pulling My Hair Out... Literally
Just a video for you all to see what it's like to lose your hair like this.....
Shave Day
So... as you can see- I have a big bald sexy head! Last night I shaved it all off and it feels great! It was about time- I had some bald spots yesterday morning and had to wear a scarf to the clinic. And I still need to wash my sheets (or at least shake them out) because there is hair all over. I was shedding more than my cat, and that's saying a lot. It feels good and our shave night was pretty fun. My friend John and roommate Juan had talked about shaving their heads with me awhile ago and so we all gathered in my living room for the big event. At the same time, another friend, Sean, was also shaving his head at his house, so the love was all around! The whole idea for John, Juan, and I was shave in steps to give ourselves the most ridiculous hairstyles we could think of- and to document the whole ordeal on camera. I was first and so they gave me 80s punk rock hairstyle with everything shaved on the left half of my head. We took some pics and then buzzed the rest off. It wasn't all that upsetting to see my hair go- it was all brown-rooted, and overdyed anyways. It did feel really bizarre to run my hand across my head though- 1/3 of my head was completely bald but I still had some rough patches of hair. Last night in bed it also felt pretty weird on my pillow- kind of scratchy and my head got really cold.
Anyways, John was next- he was used to shaving his head and was definitely game. We had thought about just leaving bangs on him- "bitch bangs" was the term we used i think.... - but then we got the idea to make a chin strap that goes all the way around your head. So we shaved a sideways mohawk on him that connected to his beard. He looked like a DJ with headphones on- either that or it looked like he had a moustache on his scalp. It was pretty funny. We joked that next time he should leave some hair around his ears so that he looked like he was wearing earmuffs.
Juan was last, and he had dreadlocks that he had been growing for a few years so I was pretty impressed he clipped them off. For him was did a "no-hawk"- or an inverse mohawk (basically no hair in a line down the middle of his head). It took a lot of work to clip those little dreads but the no-hawk was worth it! A friend later told me that we should have separated the lines a bit so that he looked like Mickey Mouse. Haha. After we shot some more pics, the two boys shaved the rest of their hair off. I swear the whole thing looked like some weird cult initiation. I just kept waiting for one of our prestiged Leschi neighbors to come to our door. What would they think....
Anyways, I think it was a blast and I'm really appreciative of the three guys for showing their support! Now we all have a sexy, maintenance-free new look!
Other than that, nothing much has been going on- This is my last week of classes and I have a finals next Friday. I also have chemo #2 on Monday- what luck! I guess I'm going to do as much as I can this weekend. I'm still pretty behind in my clinical course and I am short hours, so I may take an incomplete in that class. But I still need to pass my other two lecture courses- that's what I'm focused on. Lots and lots of information needs to get into my brain and stay in my brain after the 3 yucky days after chemo. I'm hoping to switch my anti-nausea medications or talk to my docs about medical marijuana because what I am was taking made me feel like crap. Crap as in feeling totally out of it. It's better than nausea, but I still think we could find a better med.
Oh yeah- I finally got a hold of my nurses and they gave me the results of my blood test- everything was absolutely fine- no decreases in hemoglobin, red and white blood cell counts, or platelets! I must be doing something right! I'm thanking the nutritional supplements I've been taking- I'll have to get to that side of my treatment in another post....
March 9, 2009
Hair Hair Everywhere
"Your hair is... everywhere. Screaming infidelities..." This song has been in my head for the last few days. So my hair is rapidly thinning. It's all over my coat, my shower, my pillow, my lap, other peoples' laps. I can pull out chunks at will. Tonight I was eating a bowl of rice and every time I brought the bowl up to my face to fork some in my mouth- a new hair fell into the bowl. Definitely annoying. I don't understand why all the hair on my head has to fall out. I mean, I haven't shaved my legs in like 3 months but all of THAT hair is still there. WTF?
Today I went to the SCCA to get my blood drawn. Of course I was an hour late because I forgot to change the time on my watch. No worries though- they can get you in pretty much anytime. The guy used my right arm cause my left arm vein is SHOT. Lil fucker still hurts. On another note, I can't believe that SCCA makes the patients pay for parking. What the hell? Aren't we going through enough!
After the SCCA I went to the American Cancer Society's wig bank. Apparently the corporate headquarters are here in Seattle or something. Or at least that's what the receptionist said. She was 25 and we talked for about an hour. Her mom had breast cancer and now that's why she works there. We talked a lot about medicine because she wants to be a therapist and I want to integrate psycho-socio consultations into my practice. Especially important with dealing with chronic illness. Anyways, she said that all their wigs are donated directly by stores (brand new) or are given to them by other cancer survivors. BTW- she told me that I was now a "survivor". Sounds weird to me- I'm not really free of cancer but I am alive so I guess that does qualify me as a survivor. The wig bank had 4 huge bins of wigs of all colors. Most of them were old-lady style or "mom" because they were short and curly. Some grey wigs as well (why would you get gray again if you were going to bother with a wig?). You can have two at a time, so I picked a reddish one and blonde one. Both were longer than my normal hair. For once I get to feel what's it's like to have thick voluminous hair! And red hair color that lasts! I can't imagine wearing them all the time but it should be kind of fun- new look everyday! They also had a bunch of hats and scarves so I took some of those. Not really anything good but enough to start with. There were definitely some good 80s ones with neon pink and greens!
Tomorrow is shave day. My friends John and Juan are going to shave their heads with me. We're going to make a night out of it: basically we're going to shave/cut in steps so we can take pictures of each other in stupid hairstyles- no-hawk, just-bangs, mullet, etc. Should be good for them because Juan has dreads and John has pretty thick curly hair as well. Mine- not so much. I'm not sure I will even have much by tomorrow! Anyways, I will be sure to the post our ridiculous pics!
Today I went to the SCCA to get my blood drawn. Of course I was an hour late because I forgot to change the time on my watch. No worries though- they can get you in pretty much anytime. The guy used my right arm cause my left arm vein is SHOT. Lil fucker still hurts. On another note, I can't believe that SCCA makes the patients pay for parking. What the hell? Aren't we going through enough!
After the SCCA I went to the American Cancer Society's wig bank. Apparently the corporate headquarters are here in Seattle or something. Or at least that's what the receptionist said. She was 25 and we talked for about an hour. Her mom had breast cancer and now that's why she works there. We talked a lot about medicine because she wants to be a therapist and I want to integrate psycho-socio consultations into my practice. Especially important with dealing with chronic illness. Anyways, she said that all their wigs are donated directly by stores (brand new) or are given to them by other cancer survivors. BTW- she told me that I was now a "survivor". Sounds weird to me- I'm not really free of cancer but I am alive so I guess that does qualify me as a survivor. The wig bank had 4 huge bins of wigs of all colors. Most of them were old-lady style or "mom" because they were short and curly. Some grey wigs as well (why would you get gray again if you were going to bother with a wig?). You can have two at a time, so I picked a reddish one and blonde one. Both were longer than my normal hair. For once I get to feel what's it's like to have thick voluminous hair! And red hair color that lasts! I can't imagine wearing them all the time but it should be kind of fun- new look everyday! They also had a bunch of hats and scarves so I took some of those. Not really anything good but enough to start with. There were definitely some good 80s ones with neon pink and greens!
Tomorrow is shave day. My friends John and Juan are going to shave their heads with me. We're going to make a night out of it: basically we're going to shave/cut in steps so we can take pictures of each other in stupid hairstyles- no-hawk, just-bangs, mullet, etc. Should be good for them because Juan has dreads and John has pretty thick curly hair as well. Mine- not so much. I'm not sure I will even have much by tomorrow! Anyways, I will be sure to the post our ridiculous pics!
March 3, 2009
Treatment
"Clear cell ovarian cancer is particularly aggressive and somewhat resistant to chemo." that's what my doc said during our post-op appointment. Therefore it needs to be treated aggressively with chemo and possibly radiation.... The first line treatment for ovarian cancer is usually a combination of Taxol and Carboplatin. This is effective for 95% of the other types of epithelial OC- but it may not work as well as expected for my rare clear cells (clear cells are <5%>
So I went to SCCA for my appointment. As you come into the building you have to get 'screened' for respiratory illness- meaning you fill out a little survey about cold symptoms, and you get a little 'i've been screened today' sticker (if you have symptoms I think you just wear a mask). You also always have to show your little green card that is like a credit card with all your identification information on it. I wonder how difficult it is for the receptionists to explain to foreign-language speaking patients why they have to show their green card. Anyways, I sat in the waiting room and remember being confused because there was a "isolation" section and a regular section. I wasn't really sure which one to sit in (was it for chemo patients or for those with respiratory illnesses?). When it was time for me to go back to the room for treatment, all the nurse did was say to me the number 20. I didn't know what the meant, but after looking confused another nurse led me to room 20. She gave me the full tour: RN station, bathrooms, snack room, and at least two other hallways for a total of 40 or so rooms. I laid on the bed and the nurse offered me a warm blanket, something to drink, and some oreos. The room had the usual reclining hospital bed with cable tv. It was kind of like a relaxing little day at the spa- everyone was giving you blankets, food (even a box lunch), snacks, etc. Not too bad.
The nurse then started my IV and ran some Benadryl. I've never had IV Benadryl before, but it's a trip! Within 15 sec the walls were getting a little wavy and I was zonked out. I guess there is something in the Taxol that people react to, so they have to load me with Benadryl and dextamethasone beforehand. That took about an hour, followed by a 1hr drip of the Taxol and 3hrs of the Carboplatin. All this time I was pretty much too tired to do anything but sleep and eat oreos- until my bladder started hating me. Suddenly I was having to go every 15-30min because of the liters of fluids being pumped into me. Such a pain in the ass too cause I had to unplug the IV machine and carry it on the pole with me to the bathroom while drugged on Benadryl. Eventually I got to nap some more, but then again was awakened by annoyance- a friendly chaplain had come to visit. Apparently the SCCA offers this service to anyone wanting some emotional therapy- but geez- waiting until I could barely move mouth from benadryl was not the time. She kept talking on and on.. and all the time saying "oh- I should let you rest". Sorry but the last thing I needed at that moment was a chaplain.
When I got home that night I felt ok and just went to bed. They sent me home with Lorazepam and Compazine for nausea, and a 3day dose of dextamethasone to further prevent an immune reaction. For the next few days I had no nausea which was great. I instead was extremely tired and pretty useless sitting in bed all day watching movies or sleeping. On day 4 I stopped all of the above meds and started to feel so much better! I had a little more energy and was much more functional.
So the major side effects of these two drugs are like many other chemos: nausea, bone marrow failure (low red and white blood cells and low platelets= more prone to anemia, infection, and hemorrhage), peripheral neuropathy (loss of sensation in my extremities) and of course- a sexy big bald head. I knew all this yet no one told me when it would all happen. Well 5 days later on Friday I started having awful bone pain. It ached in my knee cap and shin bone so much that I didn't really feel like moving around. I took some narcotics and that helped a little but the dull ache was pretty much still there. Then Saturday morning I woke up with the tinglies. My fingertips and pads of my toes are numb. Walking on carpet with bare feet felt odd, as well as the feel of the dishes in my hand as I unloaded them from the washer. It's hard to explain but this is what is expected. What I didn't expect is that I have been having some loss of balance. Sometimes just standing in the shower I feel myself tipping a little to the side. Now that's weird. My Romberg test was normal ;) I'm a gymnast- I don't have balance problems!!!
Now all that's on my mind is the impending hair loss. People told me that it happens in a week. Well, there is nothing on my pillow, nothing in my brush or in my shower drain. I'm totally prepared for it- I am going to shave my head with two good friends the second that it starts coming out in clumps. `I think of it as an easy way to go into summer- no need to shave my legs, no need to worry about washing the sea water out. It's also an excuse to buy new accessories such as scarves and maybe some colorful wigs. I'm now just waiting. And it's too bad I just bought new razors, a bottle of shampoo, and hair dye!
The nurse then started my IV and ran some Benadryl. I've never had IV Benadryl before, but it's a trip! Within 15 sec the walls were getting a little wavy and I was zonked out. I guess there is something in the Taxol that people react to, so they have to load me with Benadryl and dextamethasone beforehand. That took about an hour, followed by a 1hr drip of the Taxol and 3hrs of the Carboplatin. All this time I was pretty much too tired to do anything but sleep and eat oreos- until my bladder started hating me. Suddenly I was having to go every 15-30min because of the liters of fluids being pumped into me. Such a pain in the ass too cause I had to unplug the IV machine and carry it on the pole with me to the bathroom while drugged on Benadryl. Eventually I got to nap some more, but then again was awakened by annoyance- a friendly chaplain had come to visit. Apparently the SCCA offers this service to anyone wanting some emotional therapy- but geez- waiting until I could barely move mouth from benadryl was not the time. She kept talking on and on.. and all the time saying "oh- I should let you rest". Sorry but the last thing I needed at that moment was a chaplain.
When I got home that night I felt ok and just went to bed. They sent me home with Lorazepam and Compazine for nausea, and a 3day dose of dextamethasone to further prevent an immune reaction. For the next few days I had no nausea which was great. I instead was extremely tired and pretty useless sitting in bed all day watching movies or sleeping. On day 4 I stopped all of the above meds and started to feel so much better! I had a little more energy and was much more functional.
So the major side effects of these two drugs are like many other chemos: nausea, bone marrow failure (low red and white blood cells and low platelets= more prone to anemia, infection, and hemorrhage), peripheral neuropathy (loss of sensation in my extremities) and of course- a sexy big bald head. I knew all this yet no one told me when it would all happen. Well 5 days later on Friday I started having awful bone pain. It ached in my knee cap and shin bone so much that I didn't really feel like moving around. I took some narcotics and that helped a little but the dull ache was pretty much still there. Then Saturday morning I woke up with the tinglies. My fingertips and pads of my toes are numb. Walking on carpet with bare feet felt odd, as well as the feel of the dishes in my hand as I unloaded them from the washer. It's hard to explain but this is what is expected. What I didn't expect is that I have been having some loss of balance. Sometimes just standing in the shower I feel myself tipping a little to the side. Now that's weird. My Romberg test was normal ;) I'm a gymnast- I don't have balance problems!!!
Now all that's on my mind is the impending hair loss. People told me that it happens in a week. Well, there is nothing on my pillow, nothing in my brush or in my shower drain. I'm totally prepared for it- I am going to shave my head with two good friends the second that it starts coming out in clumps. `I think of it as an easy way to go into summer- no need to shave my legs, no need to worry about washing the sea water out. It's also an excuse to buy new accessories such as scarves and maybe some colorful wigs. I'm now just waiting. And it's too bad I just bought new razors, a bottle of shampoo, and hair dye!
March 2, 2009
Where it all began...
I got this idea to start a blog from a guy I met at the SCCA. We were both waiting to take our CT scans. It was nice to meet someone who was already going through treatment because this is obviously a big change in my life and I had no idea what to expect. But anyways, he has a blog to let people know what is going on and how he's doing day to day. Ya know, we get kind of sick of the daily "how are you feeling today?" It's not that I'm not totally appreciative of the support- I just never have any good answer to that question other than, "yeah, i'm tired again." I figure this way people can check out my status themselves.
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