A big sigh of relief. The PET scan made up my mind for me- The cancer is localized, I'm not dying, there is no need to flee or give up on treatments right now. I am actually pretty at ease right now with my medical situation- I may be crazy but the surgery on Wednesday is no big deal to me. YES it's major surgery and I will be out while my doctor carves into me. But I've been through this before. Now I know that there is only one tumor. It doesn't seem to be attached to anything but fat, and therefore pretty easy to remove. The incision will even be right over my old one, and much smaller. Everything seems straight-forward. Now it's just a matter of coordinating. My roomies are going to tale me and be there during to give my parents updates. I'm pretty sure I will be there 3 days again. No big deal.
So now it's time to deal with my other problems. Finances. I can't believe what a mess I am in. I don't think it's ever been so bad. I don't want to complain, but I must comment on how horrible Citibank is right now. I got a bill last month for over $450 for my first loan payment. I called and was like "WTF?" - I just graduated- don't I have a grace period?" Well... apparently you ARE allowed one grace period for the 6 months following departure from school- HOWEVER, I used this time up when I had to take a leave of absence for treatment. Even worse, I also used up 3 months of the only one forbearance allowed on this loan. Because this is a private, living-expense loan, I cannot defer, have additional forbearances, or even change to a graduated-payment plan based on unemployment or financial difficulties- all things which I have been able to do with all of my federal loans. Even with CANCER I still have to repay my loan- $450/month. I called twice and spoke to two supervisors, all who told me sorry, but they couldn't do anything. #$%$^%&%!!!!! WTF? I heard this and basically went off on these people, telling them that they should be ashamed of themselves for even working for such a heartless, shitty company. Not really the customer service reps fault, but STILL!!!
Well I can get a job, right? Hmm. I'm sure you all know how the economy is. I unfortunately have one huge problem getting any old job. I absolutely HAVE TO keep my health insurance. It's based on income- if I make any more than $1100 a month then I lose it. This is equivalent to working for minimum wage, full-time. If I took a job as a barista or worked in retail or something (jobs which under other circumstances I would be working my damnest to get) I would also lose my food stamps- a substantial amount that I depend on. So I would make $1100 a month (which would barely cover rent, utilities, and that absurd Citibank bill) and have NO insurance- owing $$$$ for surgery and future treatments. Is it worth it? NO WAY!
The situation is extremely frustrating- I cannot work as an NP because I haven't taken the test and have been too overwhelmed making life-or-death decisions lately to even study for the test. I can't get an RN job for the life of me because I have no experience. I was pretty sure I could snag one of Planned Parenthood's open positions when I did become certified, but they have filled them since I did my clinical there. Even more depressing right now, I pretty much landed a high school gymnastics coaching team position, but had to turn it down when I found out I needed surgery. I can't spot teenagers after major abdominal surgery.
And my car decided to stop working... the 6-month premium was due... Basically this is what has been on my mind lately. Not the fact that I am having major surgery. Ridiculous, huh?
Showing posts with label Diagnostic Imagery. Show all posts
Showing posts with label Diagnostic Imagery. Show all posts
November 7, 2010
October 26, 2010
PET Results
I got the PET results yesterday and I am happy to report that it found no other tumors except the one near my bladder. Nothing around my intestines, lungs, organs, etc. Yayyyyyyyyyyyyyyyyyyyyyyy!
Surgery is still on for the 10th of November...
Surgery is still on for the 10th of November...
October 16, 2010
PET Scans
Clink on the link below to better understand how it works and the rationale for use
What is a PET scan?
A PET scan allows physicians to measure the body's abnormal molecular cell activity to detect
PET scanning and molecular imaging provide real life answers to better diagnose illness, guide treatment options, and give patients ultimate control over their critical and vital health care decisions.
What is a PET scan?
Positron Emission Tomography (PET)
A PET scan allows physicians to measure the body's abnormal molecular cell activity to detect- Cancer (such as breast cancer, lung cancer, colorectal cancer, lymphoma, melanoma and other skin cancers),
- Brain Disorders (such as Alzheimer's Disease, Parkinson's Disease, and epilepsy), and
- Heart Disease (such as coronary artery disease).
PET scanning and molecular imaging provide real life answers to better diagnose illness, guide treatment options, and give patients ultimate control over their critical and vital health care decisions.
Here we go again
It's back.
The Facts:
I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.
I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.
What's weird is that my CA-125 drawn last week (tumor marker) was even lower than before, at 9. So now we know that it is not an effective marker for my kind of cancer- this is bad news because it is much easier and safer to draw blood rather than subject my self to radiation all the time. Now there is no real good way to monitor the progression and whether treatments are working.
So now what?
1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.
1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.
2.) Further lab tests. For some reason I haven't gotten a CBC or metabolic panel recently. I wonder how my platelets are because last time they were really high which puts me at risk for clotting. Also, I've been pretty dizzy when standing lately- more than usual. I wonder if I'm anemic?
3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.
3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.
This is the plan for now, because everything else depends on the results of the PET scan which is scheduled the 23rd of October. Now it's just planning again for yet another year of my life battling this thing
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!!!
June 22, 2009
Diagnostic Procedures, Cats & Naked Biking
So it was an exciting weekend!
First of all, I had an AWESOME time biking nude in the Solstice Parade. It was an exhilarating experience and I am sooooo glad I did it! There were about 500 of us this year, which was first apparent after there was no room at the Palladium for the painting party. It is actually pretty difficult painting yourself and others when you are trying to dry your armpits with your arms to the side and when you keep "exchanging" colors with everyone who walks by you. I had to repaint about every 5 minutes. It was fun though to be amongst tons of people sharing paint and admiring their body art. After the painting area was cleaned up we gathered in front and spent about 30 minutes assembling for a group picture (impossible) and walking around photographing each other. I personally loved the girl painted like Pac-Man. Awesome ideas. Next year I will definitely plan better and work on my ideas- there were a few pitfalls (not getting there early enough so my base coat wouldn't dry, having my friend help me paint my planets when he couldn't draw a circle; leaving all my stuff at the Palladium so I had no clothes later..). After we took our group photo we all gathered for a short ride around Ballard- another area of town that wasn't expecting us. I didn't know what to expect but was greeted with honks and waves and simply stunned people. The coolest thing was that when we passed clothed bikers, we cheered and yelled and actually got two to strip right there in the street and ride with us! By the time we ended up at the parade I was so psyched up. There were people 10 rows deep lining the streets all cheering and waving and photographing us for like 10 blocks. It was awesome! We rode and waved back. When we got to one intersection, a group painted like cops stood next to the real cops and helped direct us on the route- it was hilarious. There was a guy in silver skateboarding in and out of the crowd and catching rides. When we got to the end a few of us circled back around so people could get more shots. It was like being a celebrity. After we were done I had to take a trip back to get my clothes and got a little lost. So that was also kind of fun- being the lone rider on a major street. After I got my stuff I spent the rest of the day in a sarong hanging with friends and enjoying the rest of the festival. It was all- around a great day! And don't worry, I will upload my pics if you don't have facebook! Here's an article in the local newspaper.
This weekend we also had some other news. My roommate's cat has been missing for a week. It was tough cause we had twice heard from the neighbors that a similar-looking cat had been hanging out in their yards. So excitedly we went searching, only to find from a neighbor that there was a dead cat under their stairs. Unfortunately it was our little Bandit- I guess he was probably hit by a car and then crawled . It was disappointing and sad. Especially since our neighbor's cute little dog was killed by a car a week ago. Sad week for pets :( My kitty is especially sad and acting weird.
So back to medical/cancer stuff:
Last Wednesday was my cardiac echo. I still don't have the results yet if you're wondering.. It was actually a pretty cool procedure. I just lay there on the table on my left side and the tech slid the ultrasound probe around my chest. I also had a 3-lead ECG. She let me see the screen which was amazing because I could see my valves clearly flapping around with each beat. I could see all the structures of my heart, and got to watch her measure the flow in each chamber. Very cool. She said that everything looked alright but of course the cardiologist has to read it.
Thursday was the CT scan. I forgot how long it takes! I was there for hours! First they give you two huge bottles of berry flavored chalk to drink (barium contrast). You drink the first one (choice of chilled or room temperature), and sit there for 40 minutes to let it digest. Then you drink number two and wait 4o minutes. The reason they do this is so that the first swallow gets to your small intestine and the second is still in your stomach when you get the scan. Anyways, then I get called for the scan, during which I get injected with yet another form of contrast. I lay down on the scanner and it goes back and forth beaming rays through me. Sometimes a little smiley face on the machine lights up to tell me to breathe or hold my breath (to raise my lungs to get a better image). After the scan, I have to go back into the waiting room for observation because some people react to the contrast. The whole thing took like 4 hrs.
Well that's it for now! Happy Solstice!!!
First of all, I had an AWESOME time biking nude in the Solstice Parade. It was an exhilarating experience and I am sooooo glad I did it! There were about 500 of us this year, which was first apparent after there was no room at the Palladium for the painting party. It is actually pretty difficult painting yourself and others when you are trying to dry your armpits with your arms to the side and when you keep "exchanging" colors with everyone who walks by you. I had to repaint about every 5 minutes. It was fun though to be amongst tons of people sharing paint and admiring their body art. After the painting area was cleaned up we gathered in front and spent about 30 minutes assembling for a group picture (impossible) and walking around photographing each other. I personally loved the girl painted like Pac-Man. Awesome ideas. Next year I will definitely plan better and work on my ideas- there were a few pitfalls (not getting there early enough so my base coat wouldn't dry, having my friend help me paint my planets when he couldn't draw a circle; leaving all my stuff at the Palladium so I had no clothes later..). After we took our group photo we all gathered for a short ride around Ballard- another area of town that wasn't expecting us. I didn't know what to expect but was greeted with honks and waves and simply stunned people. The coolest thing was that when we passed clothed bikers, we cheered and yelled and actually got two to strip right there in the street and ride with us! By the time we ended up at the parade I was so psyched up. There were people 10 rows deep lining the streets all cheering and waving and photographing us for like 10 blocks. It was awesome! We rode and waved back. When we got to one intersection, a group painted like cops stood next to the real cops and helped direct us on the route- it was hilarious. There was a guy in silver skateboarding in and out of the crowd and catching rides. When we got to the end a few of us circled back around so people could get more shots. It was like being a celebrity. After we were done I had to take a trip back to get my clothes and got a little lost. So that was also kind of fun- being the lone rider on a major street. After I got my stuff I spent the rest of the day in a sarong hanging with friends and enjoying the rest of the festival. It was all- around a great day! And don't worry, I will upload my pics if you don't have facebook! Here's an article in the local newspaper.
This weekend we also had some other news. My roommate's cat has been missing for a week. It was tough cause we had twice heard from the neighbors that a similar-looking cat had been hanging out in their yards. So excitedly we went searching, only to find from a neighbor that there was a dead cat under their stairs. Unfortunately it was our little Bandit- I guess he was probably hit by a car and then crawled . It was disappointing and sad. Especially since our neighbor's cute little dog was killed by a car a week ago. Sad week for pets :( My kitty is especially sad and acting weird.
So back to medical/cancer stuff:
Last Wednesday was my cardiac echo. I still don't have the results yet if you're wondering.. It was actually a pretty cool procedure. I just lay there on the table on my left side and the tech slid the ultrasound probe around my chest. I also had a 3-lead ECG. She let me see the screen which was amazing because I could see my valves clearly flapping around with each beat. I could see all the structures of my heart, and got to watch her measure the flow in each chamber. Very cool. She said that everything looked alright but of course the cardiologist has to read it.
Thursday was the CT scan. I forgot how long it takes! I was there for hours! First they give you two huge bottles of berry flavored chalk to drink (barium contrast). You drink the first one (choice of chilled or room temperature), and sit there for 40 minutes to let it digest. Then you drink number two and wait 4o minutes. The reason they do this is so that the first swallow gets to your small intestine and the second is still in your stomach when you get the scan. Anyways, then I get called for the scan, during which I get injected with yet another form of contrast. I lay down on the scanner and it goes back and forth beaming rays through me. Sometimes a little smiley face on the machine lights up to tell me to breathe or hold my breath (to raise my lungs to get a better image). After the scan, I have to go back into the waiting room for observation because some people react to the contrast. The whole thing took like 4 hrs.
Well that's it for now! Happy Solstice!!!
March 17, 2009
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 2, 2009
From the beginning: the long story
Plus.... I can tell how this all happened once and only once...
So here's the story:
Back in late November I started having aching low back pain and pelvic pressure when I walked. I also had some urinary symptoms: urgency, frequency, etc. At the time, we were studying women's health in school and had actually just done a case study on pelvic inflammatory disease. So immediately I was like BAM! that's what I have. But then I was busy and put off making an appointment that week. One week later, the pain was gone and things were normal again. But then I had a new symptom- my right hip hurt- a deep, achy pain that felt like it was coming from my bones. And it would be constant whether I got up and walked around or was sitting. Also, even though I wasn't particularly stressed about school, I had lost my appetite and starting feeling full earlier than expect. And the weight loss began...I was suddenly the weight that I had been in high school (when on the gymnastics team) So basically, what finally prompted me to go to the doctor were the red flags of cancer: bone pain with rest, unexplained weight loss, and the fact that I used to LOVE to eat and snacked all day. I remember sitting there on the futon at this time, doing my homework and making observations/jokes to my roommates that maybe I had cancer. We also joked that I had a tapeworm that I needed to keep in line. I knew that I needed to go to the doctor but of course this happened: with the move into the new house I lost track of some bills and ended up not sending in my December health insurance premium. How fucking ironic. I never had any health problems before. Now my coverage was inconveniently suspended in the very month that something was actually wrong with me.
Anyways, so on my birthday (Dec 10) I marched into Seattle's Univ. FREE health clinic to check out what I initially thought was an infection. My NP there was awesome and listened to my concerns. I was feeling reassured that I just had a bad infection until she did the speculum exam. Damn that thing hurt! And it never ever had hurt before. It was this point that I knew something was wrong and I think I started crying right there. This marked the beginning of almost 2 months of agony and anxiety about what could be going on with me. She then told me that she found a 8cm mass in my ovary and that she was going to do some blood tests and send me to get an ultrasound to see if it was a simple cyst. So I left feeling somewhat ok that it could be a cyst, but the thought of cancer never left my mind. She called a few days later with results that my platelet counts were high. This freaked me out as well. Having just finished up a course on women's health, I had two gyno books at my disposal, as well as lab interpretation textbooks. Really high platelets= possible sign of bone marrow failure (and from cancer).
All of this was awful timing because I was about to go home for Xmas break. But I wanted to get the US first. So I paid for the damn thing myself and got it right before I left. That was a scary procedure as well because the technician would not let me even peek at the monitor. Very frustrating for a medical student. She spend so much time in there that I thought I had other masses. I think i was feeling a little hysterical at this point because I requested some valium from the school NP.
Well a few long days late I got the results of the US: it was a 8cm solid mass with some cystic components that may or may not be located in the ovary. Solid= bad= not cyst. There were no other malignant-like findings, but with the size and consistency the reporter could not rule out malignancy. Those were the words I took home with me for my vacation "can not rule out malignancy". As pissed as they probably are about it now, I didn't tell either my parents or my sister what was going on. I just wanted to enjoy my Xmas. Plus everyone was already so stressed out- i knew that this would make it worse, even if I meant that I had to hide my anxiety and need to tell them. I did tell some good friends at home and that helped to calm me down. I remember leaving St Louis and Urbana feeling pretty good- I had had a great time hanging out with old friends and family- probably one of the best times I've had visiting. I did sleep a lot when I was there though. I think I woke up at 2pm every afternoon for those 2 weeks. My parents did manage to fatten me up a little bit too. My hip still hurt a lot and I know my parents wondered what was going on with that.
At home I was desperate to get in to see the gyno but because of the massive snow storm and Seattle's mismanagement the clinic hadn't been open all week. I was finally able to get an appointment with my PCP who ordered an MRI, and the gyno doc. I had the MRI first which was one of the most boring things I've ever experienced. You lay down on a table and the magnets rotate around you with blaring noise. It took at least an hour and none of the music stations they had for you to listen to were working. After the MRI I picked up the films and took them to meet the gyno for the first time. She did an exam and looked at the MRI and decided that laparascopic surgery was in need to remove the mass. She originally thought that the mass was uterine in origin and we had a long discussion about how much it would suck to have to have C-sections every time I got pregnant. I had always had this desire to go natural childbirth- with no epidural just like my mom did. Having a C-section would ruin that whole experience for me... Dr Gyno changed her mind when she got the results of my CA-125 blood test. The CA-125 is an protein found in ovarian cancer cells. The usual values are from 0-35. Well mine was 420. In pre-menopausal women it is not reliable as a diagnostic or screening test for ovarian cancer, but 80% of menopausal women with high values have stage II, III, and IV ovarian cancer. There are other causes for CA-125 elevations, but the values in these causes are usually much less than my 420. So basically another test that could not rule out malignancy.
After thinking about the MRI findings, CA-125 test and the possibility of cancer, I started wondering if laparoscopic surgery wasn't the way to go. With a lap surgery, my max recovery time could be a week and so I would miss much less class and clinical. But, if they did a lap and discovered that the mass was malignant, then they would have close (to reduce risk of releasing more cells into the body) and reschedule another abdominal surgery. Rather than go though all this surgery during a busy quarter I decided to consult with UW Medical and a gyn-onc surgeon. After meeting with me, she immediately told me that she could not remove the mass laparoscopically and that the recovery time would be 4-6 wks. I was devastated at this time because that would be a ton of missed school and recovery. But I wanted that tumor out, so I schedule my surgery for January 30th at the UWMH. She told me that there was a 50-50 chance that the mass could be cancerous at this point, but was thankful that they would be able to remove it early. She also came in with forms for me to sign about what should happen if they do find malignancy. The standard in ovarian cancer is to take the other ovary, unless the woman is of childbearing age. I remember signing the form that it would be ok to take the other ovary if it would be medically unsafe or if the cancer was particularly aggressive. Then I almost signed my uterus away, but my sister had told me that I could have some of her eggs.
So after step after step of malignancy not being ruled out- I finally geared up to call my parents. I had wanted to know the definitive diagnose before i told them. but i realize that this could no longer be possible without surgery, and they need to at least know that I was getting surgery. So I called them and it was awful- lots of crying. They made arrangements to fly to Seattle for my 5 day stay. I was upset because the one time I can get them to stop overworking themselves and take a vacation, it has to be to visit their sick daughter and her abdominal incision. Too bad cause I wanted to show them around and instead was in bed for 5 days.
Well I prepared for surgery by letting my professors and clinical sites know- weird because I didn't really know the outcome of when I would be back- just that recovery maybe take up to 4 wks. The night before I had to do a bowel prep which consisted of drinking 2 entire bottles of milk of magnesia. Ughhhhh. my ass hurt after that one. I spent more time on the toilet than doing anything else the most of the night. The morning of surgery I packed my backs with lots to do knowing that i would have a 5 day stay. The UW hospital was amazing, and I was totally impressed with the care. I met with the anesthesiologist who prepped me for surgery, and my surgeon who wanted to run through the plan. She said it would take about 3 hours max, and that she didn't think there would be any need to take the other ovary. Next thing I knew, I was being wheeled out to surgery and then what felt like moments late- wheeled back into the recovery room.
All I remember from the recovery room is whispering. People talking about me with concerned voices. The results of the surgery. At some point I asked for an epidural. I remember sitting against the side of the bed listening to a new resident get instruction from the doctor on how to place the catheter. It was taking way too long. From where I was I had just well assumed that she had no idea what she was doing. I remember crying here and everyone kept asking me "does it hurt?" No it didn't hurt- I am just scared because you are taking an hour to stick a massive needle in my spine and I am overhearing evidence that this may be your first placement. Finally when they got it in- I looked down at my belly and saw that the incision was twice the size that the doctor had anticipated. This was my clue that something had gone wrong. It also explained all the whispering from the nurses- I knew that she had found cancer.
A super nice resident came in later and gave me the most direct explanation of what they had found in surgery: The ovarian mass was actually 10cm, solid, indeed located in the ovary, and had pathology that showed it was malignant in nature. Therefore, the surgeon had decided to take my other ovary. Biopsies from the abdominal lining and adjacent structures were negative. However, just when they were about to close the surgeon was surprised to find a 2 cm metastasis to my para-aortic nodes. Apparently rather than spreading to adjacent tissues, the metastases spread through the blood stream and wrapped around the vena cava (makes me wonder if this would explain why I would get so light-headed when I stood up). Fortunately, the surgeon was able to remove the node and they were able to close without complications. The resident explained this all so matter-of-factly, yet had so much concern in her eyes when she told me that they took the other ovary. I asked her what my staging was and she said Stage: III (C). Basically in ovarian cancer that means that it has spread beyond one or both ovaries into the abdominal cavity or adjacent lymph nodes.
So after all that time my instincts had been right. It is so weird now- all that anxiety I had been feeling was suddenly released. I can accept cancer- apparently I just can't accept the unknown. The watching and waiting and not knowing was what was causing me so much distress. Now I actually feel a little more positive and much more relaxed.
So here's the story:
Back in late November I started having aching low back pain and pelvic pressure when I walked. I also had some urinary symptoms: urgency, frequency, etc. At the time, we were studying women's health in school and had actually just done a case study on pelvic inflammatory disease. So immediately I was like BAM! that's what I have. But then I was busy and put off making an appointment that week. One week later, the pain was gone and things were normal again. But then I had a new symptom- my right hip hurt- a deep, achy pain that felt like it was coming from my bones. And it would be constant whether I got up and walked around or was sitting. Also, even though I wasn't particularly stressed about school, I had lost my appetite and starting feeling full earlier than expect. And the weight loss began...I was suddenly the weight that I had been in high school (when on the gymnastics team) So basically, what finally prompted me to go to the doctor were the red flags of cancer: bone pain with rest, unexplained weight loss, and the fact that I used to LOVE to eat and snacked all day. I remember sitting there on the futon at this time, doing my homework and making observations/jokes to my roommates that maybe I had cancer. We also joked that I had a tapeworm that I needed to keep in line. I knew that I needed to go to the doctor but of course this happened: with the move into the new house I lost track of some bills and ended up not sending in my December health insurance premium. How fucking ironic. I never had any health problems before. Now my coverage was inconveniently suspended in the very month that something was actually wrong with me.
Anyways, so on my birthday (Dec 10) I marched into Seattle's Univ. FREE health clinic to check out what I initially thought was an infection. My NP there was awesome and listened to my concerns. I was feeling reassured that I just had a bad infection until she did the speculum exam. Damn that thing hurt! And it never ever had hurt before. It was this point that I knew something was wrong and I think I started crying right there. This marked the beginning of almost 2 months of agony and anxiety about what could be going on with me. She then told me that she found a 8cm mass in my ovary and that she was going to do some blood tests and send me to get an ultrasound to see if it was a simple cyst. So I left feeling somewhat ok that it could be a cyst, but the thought of cancer never left my mind. She called a few days later with results that my platelet counts were high. This freaked me out as well. Having just finished up a course on women's health, I had two gyno books at my disposal, as well as lab interpretation textbooks. Really high platelets= possible sign of bone marrow failure (and from cancer).
All of this was awful timing because I was about to go home for Xmas break. But I wanted to get the US first. So I paid for the damn thing myself and got it right before I left. That was a scary procedure as well because the technician would not let me even peek at the monitor. Very frustrating for a medical student. She spend so much time in there that I thought I had other masses. I think i was feeling a little hysterical at this point because I requested some valium from the school NP.
Well a few long days late I got the results of the US: it was a 8cm solid mass with some cystic components that may or may not be located in the ovary. Solid= bad= not cyst. There were no other malignant-like findings, but with the size and consistency the reporter could not rule out malignancy. Those were the words I took home with me for my vacation "can not rule out malignancy". As pissed as they probably are about it now, I didn't tell either my parents or my sister what was going on. I just wanted to enjoy my Xmas. Plus everyone was already so stressed out- i knew that this would make it worse, even if I meant that I had to hide my anxiety and need to tell them. I did tell some good friends at home and that helped to calm me down. I remember leaving St Louis and Urbana feeling pretty good- I had had a great time hanging out with old friends and family- probably one of the best times I've had visiting. I did sleep a lot when I was there though. I think I woke up at 2pm every afternoon for those 2 weeks. My parents did manage to fatten me up a little bit too. My hip still hurt a lot and I know my parents wondered what was going on with that.
At home I was desperate to get in to see the gyno but because of the massive snow storm and Seattle's mismanagement the clinic hadn't been open all week. I was finally able to get an appointment with my PCP who ordered an MRI, and the gyno doc. I had the MRI first which was one of the most boring things I've ever experienced. You lay down on a table and the magnets rotate around you with blaring noise. It took at least an hour and none of the music stations they had for you to listen to were working. After the MRI I picked up the films and took them to meet the gyno for the first time. She did an exam and looked at the MRI and decided that laparascopic surgery was in need to remove the mass. She originally thought that the mass was uterine in origin and we had a long discussion about how much it would suck to have to have C-sections every time I got pregnant. I had always had this desire to go natural childbirth- with no epidural just like my mom did. Having a C-section would ruin that whole experience for me... Dr Gyno changed her mind when she got the results of my CA-125 blood test. The CA-125 is an protein found in ovarian cancer cells. The usual values are from 0-35. Well mine was 420. In pre-menopausal women it is not reliable as a diagnostic or screening test for ovarian cancer, but 80% of menopausal women with high values have stage II, III, and IV ovarian cancer. There are other causes for CA-125 elevations, but the values in these causes are usually much less than my 420. So basically another test that could not rule out malignancy.
After thinking about the MRI findings, CA-125 test and the possibility of cancer, I started wondering if laparoscopic surgery wasn't the way to go. With a lap surgery, my max recovery time could be a week and so I would miss much less class and clinical. But, if they did a lap and discovered that the mass was malignant, then they would have close (to reduce risk of releasing more cells into the body) and reschedule another abdominal surgery. Rather than go though all this surgery during a busy quarter I decided to consult with UW Medical and a gyn-onc surgeon. After meeting with me, she immediately told me that she could not remove the mass laparoscopically and that the recovery time would be 4-6 wks. I was devastated at this time because that would be a ton of missed school and recovery. But I wanted that tumor out, so I schedule my surgery for January 30th at the UWMH. She told me that there was a 50-50 chance that the mass could be cancerous at this point, but was thankful that they would be able to remove it early. She also came in with forms for me to sign about what should happen if they do find malignancy. The standard in ovarian cancer is to take the other ovary, unless the woman is of childbearing age. I remember signing the form that it would be ok to take the other ovary if it would be medically unsafe or if the cancer was particularly aggressive. Then I almost signed my uterus away, but my sister had told me that I could have some of her eggs.
So after step after step of malignancy not being ruled out- I finally geared up to call my parents. I had wanted to know the definitive diagnose before i told them. but i realize that this could no longer be possible without surgery, and they need to at least know that I was getting surgery. So I called them and it was awful- lots of crying. They made arrangements to fly to Seattle for my 5 day stay. I was upset because the one time I can get them to stop overworking themselves and take a vacation, it has to be to visit their sick daughter and her abdominal incision. Too bad cause I wanted to show them around and instead was in bed for 5 days.
Well I prepared for surgery by letting my professors and clinical sites know- weird because I didn't really know the outcome of when I would be back- just that recovery maybe take up to 4 wks. The night before I had to do a bowel prep which consisted of drinking 2 entire bottles of milk of magnesia. Ughhhhh. my ass hurt after that one. I spent more time on the toilet than doing anything else the most of the night. The morning of surgery I packed my backs with lots to do knowing that i would have a 5 day stay. The UW hospital was amazing, and I was totally impressed with the care. I met with the anesthesiologist who prepped me for surgery, and my surgeon who wanted to run through the plan. She said it would take about 3 hours max, and that she didn't think there would be any need to take the other ovary. Next thing I knew, I was being wheeled out to surgery and then what felt like moments late- wheeled back into the recovery room.
All I remember from the recovery room is whispering. People talking about me with concerned voices. The results of the surgery. At some point I asked for an epidural. I remember sitting against the side of the bed listening to a new resident get instruction from the doctor on how to place the catheter. It was taking way too long. From where I was I had just well assumed that she had no idea what she was doing. I remember crying here and everyone kept asking me "does it hurt?" No it didn't hurt- I am just scared because you are taking an hour to stick a massive needle in my spine and I am overhearing evidence that this may be your first placement. Finally when they got it in- I looked down at my belly and saw that the incision was twice the size that the doctor had anticipated. This was my clue that something had gone wrong. It also explained all the whispering from the nurses- I knew that she had found cancer.
A super nice resident came in later and gave me the most direct explanation of what they had found in surgery: The ovarian mass was actually 10cm, solid, indeed located in the ovary, and had pathology that showed it was malignant in nature. Therefore, the surgeon had decided to take my other ovary. Biopsies from the abdominal lining and adjacent structures were negative. However, just when they were about to close the surgeon was surprised to find a 2 cm metastasis to my para-aortic nodes. Apparently rather than spreading to adjacent tissues, the metastases spread through the blood stream and wrapped around the vena cava (makes me wonder if this would explain why I would get so light-headed when I stood up). Fortunately, the surgeon was able to remove the node and they were able to close without complications. The resident explained this all so matter-of-factly, yet had so much concern in her eyes when she told me that they took the other ovary. I asked her what my staging was and she said Stage: III (C). Basically in ovarian cancer that means that it has spread beyond one or both ovaries into the abdominal cavity or adjacent lymph nodes.
So after all that time my instincts had been right. It is so weird now- all that anxiety I had been feeling was suddenly released. I can accept cancer- apparently I just can't accept the unknown. The watching and waiting and not knowing was what was causing me so much distress. Now I actually feel a little more positive and much more relaxed.
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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