Insurance company's play a role in my treatment as well. They send nurses/doctors through hoops to pay for a certain test, so the nurses/doctors may find a different cheaper test that is also acceptable, or the insurance companies will give them the info about this less expensive test and encourage them to use it.
In regards to my tests two blogs ago, the Echo is a cheaper test than the MUGA. My nurse/doctor team has started to twitch ( I meant to say switch, but what a great freudian slip) to the Echo because of insurance companies. I wish their reason also included the increased exposure to radiation, but what do I know, maybe it does. I haven't talked specifically to my doctor about this detail; sometimes the true reasons for a change can be convoluted when I don't go to the source of the information.
Another example of insurance-company envolvement is the choice of my nausea drugs. I had EMEND during this chemo in addition to the ZOFRAN. I've been getting more nauseous with the chemo treatments (cumulative effects are normal with ABVD - the type of chemo I'm receiving.). It had been subtle, but I have been getting slightly more miserable; I see my knuckles turning white - figuratively - during post chemo days. My nurse simply wants to nip this additional strain in regards to the nausea in the bud quickly; she said that if I were to puke once during post-chemo, patient comfort tends to get considerably worse for future treatments (fear and anxiety increase significantly ... what else could get worse? Maybe puke begets puke). EMEND - you've guessed it- is an expensive drug that the insurance companies don't like doctors to use as the first line of treatment. Zofran isn't as good of a drug, but is cheaper and is generally used as the first line of treatment.
So, I'm on EMEND and so far so great! I didn't have any initial side effects when they were administering the drug; this is when the patient can have side effects (the danger that I was worried about.) Some people get restless (I heard anxious which isn't my cup of tea), but luckily none of this happened.
AND the nausea is minding it's own business thank you very much! Ahhhhhhhhhhhhhhhhhhhhhhhh!
Alright, back to bed. It's the night after chemo so the steroid wakes me up about this time, but the Adivan is starting to kick in so I can sleep again. yeah. Have a good day and someone remove this consistent rain over the Chicago area for me. I'm finding that I can only picture myself as a sprouting plant enjoying the rain for so long; my plant-self is getting overwhelmed by the deluge too. We're all in this together ... go away rain!
Thursday, April 28, 2011
Wednesday, April 27, 2011
Chemo #9
I'm not an asshole (as my last post indicated), but I think the point was clear; I have decided to be involved in my treatment. I think y'all probably know that, but I wanted to clarify. The word asshole is a gross exaggeration.
I am about to leave for chemo #9! I am feeling like I'm in the 16th mile of a marathon (I don't have personal experience, but I believe that this is a pretty tough mile). I'm excited to have the next two chemos under my belt, so I can see the finish line. I've been writing on an online Hodgkin patient forum and there's a fellow patient with the Hodge who is exactly 3 weeks ahead of me in the same treatment plan. He posted on Sunday that he can see the finish line and he feels really good about it. I have 2.5 weeks until I'm in his exact spot. Surprisingly, this is very helpful to think about because 2.5 weeks is much for doable than 2 months. Did you catch "The Hodge?" If you use the Hodge instead of saying Hodgkin, your coolness factor goes up ... no really. Cool nicknames are all part of having a young persons disease!
I did wake up with a cold. Brennan and I walked around in the misty weather yesterday. Perhaps that's why I feel sick, or perhaps Brennan was sniffling before our walk and I caught the cold from him. Whichever way, I will probably put me back on antibiotics at my chemo session today. They did this a few months ago and after a several days of digestive issues the cold was gone. I'll keep you posted.
I am about to leave for chemo #9! I am feeling like I'm in the 16th mile of a marathon (I don't have personal experience, but I believe that this is a pretty tough mile). I'm excited to have the next two chemos under my belt, so I can see the finish line. I've been writing on an online Hodgkin patient forum and there's a fellow patient with the Hodge who is exactly 3 weeks ahead of me in the same treatment plan. He posted on Sunday that he can see the finish line and he feels really good about it. I have 2.5 weeks until I'm in his exact spot. Surprisingly, this is very helpful to think about because 2.5 weeks is much for doable than 2 months. Did you catch "The Hodge?" If you use the Hodge instead of saying Hodgkin, your coolness factor goes up ... no really. Cool nicknames are all part of having a young persons disease!
I did wake up with a cold. Brennan and I walked around in the misty weather yesterday. Perhaps that's why I feel sick, or perhaps Brennan was sniffling before our walk and I caught the cold from him. Whichever way, I will probably put me back on antibiotics at my chemo session today. They did this a few months ago and after a several days of digestive issues the cold was gone. I'll keep you posted.
Thursday, April 21, 2011
Mirror Mirror
I was looking in the mirror today and noticed that my eyes were hollowed. I looked a little funny ... perhaps ghostly. My mind searched for the reason - was it my skin color? What's wrong with me? No... it wasn't my nose ... it's always been funny. I was beginning to worry when it dawned on me - my eyelashes are thinning. I seem to still have quite a few small blond lashes, but it looks as though my lashes are gone. Here ... see for yourself.
A couple months ago, Eric and I were talking to a woman in the waiting room before chemo. I asked her about hairloss; she had lost all her hair both times she went through chemo. The first time she wore a pair of glasses to help frame her face because her eyebrows were gone. This time she went to a makeup store and bought fake lashes and an eyebrow pen because she was sick of wearing glasses she didn't need. I didn't quite grasp what she was talking about until my eyelashes thinned. The glasses really do help me look more "normal," or at least more like me. Alright, I look weird in both pictures, but trust me on the glasses thing ... they help.
So yes, my hair is still falling out all over the place. There were several squirrels stuck to Brennan's pajamas this morning, and a big squirrel in the shower. I have heard chemo patients say that such squirrels bothered them enough to cut their hair short, but I guess I like rodents because I'm not phased by them (my family ... well they're another story). Here's a fun fact; the time of the chemo cycle I notice my hair falling out most is one week after treatment. It's not right after treatment like you would think. or ... it could just coincide with the time I get around to taking a shower ...
I think I've mentioned the "Assholes Live" concept. It's the same concept as "The squeaky wheel gets the oil". I most likely embarrassed my husband to death, but I definitely took this concept to heart today. I was meant to get two tests today. The first is the Pulmonary Function Test (to test lung function)and the second is the MUGA (to test heart function). I had each of these tests back in December as baseline tests, and this second round is meant to see whether or not the chemo has had a negative effect on my organs. The Pulmonary Function Test (or PFT) was a breeze. This is the test that I struggled with in December because they lock you in a tiny phone-book-sized, clear box and shut your air supply off! Turns out that they can do the test without the box, so this one was a breeze. (I haven't been looking forward to being locked in the box, and have actually been practicing being zen in tight spaces for .... umm... a couple weeks now. Eric even came with me for moral support. Alas, the first time I had the test, the woman was merely trying to torture me.)
Back to the Assholes Live story ... the second test was meant to be the MUGA test, but when I checked in, I overheard the woman at the desk say to another woman that my doctor's order for the test was from December.
Assholes Live Lesson Number 1 - Don't hesitate to easedrop.
It has been my experience that not everyone at the hospital shares information with me .. the patient, so I've been finding ways around it. If I think they aren't telling me something, I keep asking people until someone spills the beans. My two advocates who know I like information and tell me everything are my doctor (he's awesome) and my chemo nurse (she's aweseme too). So, when the woman at the desk gave me an order from December, I told her that it was an old order and that she needs to get a new one. AND next, I paged the chemo nurse.
Assholes Live Lesson Number 2 - Don't hesitate to page hospital staff - doctors, nurses, anyone.
The chemo nurse told me that the order in the system was actually for an Echo cardiogram. She confirmed that the MUGA order was from my first MUGA ages ago. While I was talking to my chemo nurse, the woman at the desk (who already hasn't performed her duties well) called my doctor's nurse (not my chemo nurse) for a new order for the MUGA and she sent one. The front lady at the desk is now relieved that her job is finished and tells me to wait for someone to call me. Of course, my question is "WHY?" When they paged me (I was busy looking up the difference between the echo and the MUGA on my phone), I asked the radiation nurse "why?" and she rambled on and on about it not being her job or some crap like that. She finally offered to page my doctor's nurse. The doctor's nurse called and told me that their was no difference between the MUGA and the Echo. I didn't believe her, but I wasn't getting anywhere, so I told the nurse I would move forward with the MUGA only to ask the next person what the difference was between the two tests.
Assholes Live Lesson Number 3 - If you aren't getting straight answers, keep asking questions until you understand what is happening with YOUR treatment.
I finally got a real answer; the MUGA is more accurate, but it comes with a price - additional radiation - she told me that it comes with half of the radiation of a CT scan. I don't want additional radiation (I'm going to have lots of CT scans and PET scans in the upcoming years ... I don't want more radiation). SooooMUGA." He told me what I already knew. I asked him if he preferred that I get one test over the other and he said that he does not care in the least. If the Echo is at all abnormal, he will immediately order a MUGA. Finally! I walked out of the hospital and scheduled an Echo for the next day.
Am I a nightmare patient? Yes. Eric was even wondering about my sanity half way through the process. Am I an Asshole? I don't think I have that title yet. However, I do feel comfortable with my treatment ... and if there's a news report about concern over the amount of radiation given to patients during medical testing, I'll feel like I did the right thing. Now if you'll excuse me.... I have to go all the way back to the hospital for my Echo!!!!!!!!! he he......
A couple months ago, Eric and I were talking to a woman in the waiting room before chemo. I asked her about hairloss; she had lost all her hair both times she went through chemo. The first time she wore a pair of glasses to help frame her face because her eyebrows were gone. This time she went to a makeup store and bought fake lashes and an eyebrow pen because she was sick of wearing glasses she didn't need. I didn't quite grasp what she was talking about until my eyelashes thinned. The glasses really do help me look more "normal," or at least more like me. Alright, I look weird in both pictures, but trust me on the glasses thing ... they help.
So yes, my hair is still falling out all over the place. There were several squirrels stuck to Brennan's pajamas this morning, and a big squirrel in the shower. I have heard chemo patients say that such squirrels bothered them enough to cut their hair short, but I guess I like rodents because I'm not phased by them (my family ... well they're another story). Here's a fun fact; the time of the chemo cycle I notice my hair falling out most is one week after treatment. It's not right after treatment like you would think. or ... it could just coincide with the time I get around to taking a shower ...
I think I've mentioned the "Assholes Live" concept. It's the same concept as "The squeaky wheel gets the oil". I most likely embarrassed my husband to death, but I definitely took this concept to heart today. I was meant to get two tests today. The first is the Pulmonary Function Test (to test lung function)and the second is the MUGA (to test heart function). I had each of these tests back in December as baseline tests, and this second round is meant to see whether or not the chemo has had a negative effect on my organs. The Pulmonary Function Test (or PFT) was a breeze. This is the test that I struggled with in December because they lock you in a tiny phone-book-sized, clear box and shut your air supply off! Turns out that they can do the test without the box, so this one was a breeze. (I haven't been looking forward to being locked in the box, and have actually been practicing being zen in tight spaces for .... umm... a couple weeks now. Eric even came with me for moral support. Alas, the first time I had the test, the woman was merely trying to torture me.)
Back to the Assholes Live story ... the second test was meant to be the MUGA test, but when I checked in, I overheard the woman at the desk say to another woman that my doctor's order for the test was from December.
Assholes Live Lesson Number 1 - Don't hesitate to easedrop.
It has been my experience that not everyone at the hospital shares information with me .. the patient, so I've been finding ways around it. If I think they aren't telling me something, I keep asking people until someone spills the beans. My two advocates who know I like information and tell me everything are my doctor (he's awesome) and my chemo nurse (she's aweseme too). So, when the woman at the desk gave me an order from December, I told her that it was an old order and that she needs to get a new one. AND next, I paged the chemo nurse.
Assholes Live Lesson Number 2 - Don't hesitate to page hospital staff - doctors, nurses, anyone.
The chemo nurse told me that the order in the system was actually for an Echo cardiogram. She confirmed that the MUGA order was from my first MUGA ages ago. While I was talking to my chemo nurse, the woman at the desk (who already hasn't performed her duties well) called my doctor's nurse (not my chemo nurse) for a new order for the MUGA and she sent one. The front lady at the desk is now relieved that her job is finished and tells me to wait for someone to call me. Of course, my question is "WHY?" When they paged me (I was busy looking up the difference between the echo and the MUGA on my phone), I asked the radiation nurse "why?" and she rambled on and on about it not being her job or some crap like that. She finally offered to page my doctor's nurse. The doctor's nurse called and told me that their was no difference between the MUGA and the Echo. I didn't believe her, but I wasn't getting anywhere, so I told the nurse I would move forward with the MUGA only to ask the next person what the difference was between the two tests.
Assholes Live Lesson Number 3 - If you aren't getting straight answers, keep asking questions until you understand what is happening with YOUR treatment.
I finally got a real answer; the MUGA is more accurate, but it comes with a price - additional radiation - she told me that it comes with half of the radiation of a CT scan. I don't want additional radiation (I'm going to have lots of CT scans and PET scans in the upcoming years ... I don't want more radiation). SooooMUGA." He told me what I already knew. I asked him if he preferred that I get one test over the other and he said that he does not care in the least. If the Echo is at all abnormal, he will immediately order a MUGA. Finally! I walked out of the hospital and scheduled an Echo for the next day.
Am I a nightmare patient? Yes. Eric was even wondering about my sanity half way through the process. Am I an Asshole? I don't think I have that title yet. However, I do feel comfortable with my treatment ... and if there's a news report about concern over the amount of radiation given to patients during medical testing, I'll feel like I did the right thing. Now if you'll excuse me.... I have to go all the way back to the hospital for my Echo!!!!!!!!! he he......
Tuesday, April 19, 2011
Nauseous
Ever wonder why every two weeks I stop blogging for about 5 days? No .... thought not. I'll tell you anyway ... it's not easy to blog nauseous. Not easy to be witty ... not that I am when feeling well but at least I have half a chance at accidentally saying something amusing.
This last round was rough, but not for good reason. It was mostly due to an acupuncture session that I had the day after chemo. I went to a new acupuncturist since the one I normally go to is out of town. The session started normally enough, but then the acupuncturist said five little words, "I'm going to do aromatherapy." In my relaxed state, I felt that there was something wrong with this statement, but I couldn't put my finger on what it was. The acupuncturist put an essential oil under my nose and instructed me to breathe in 5 times. As I was doing it, I subconsciously knew something was wrong, but I felt funny saying, "ummm... something is wrong breathing in your pure essential oil, but .... sorry... no clue what." After the acupuncturist left the room, it finally dawned on me. It was the same scent (lemon) that I smell right before chemo begins (on top of being super sensitive to smells - thanks to the chemo). My port has rested two weeks when I walk into chemo, so the nurse needs to draw out blood to make sure my port is usable. To draw out the blood she/he first injects saline. Now this saline at first was no big deal. I even scoffed at the warnings of those who had chemo-ed before me; whatever guys - this is a cake walk. But, yet again (you're not allowed to agree) I was very wrong .... so wrong, it's on the verge of hilarious. Well, I now use lemon to cover up the taste of the saline ... and we've come full circle.
The association between lemon and chemo is so strong that I almost can't bear to write this; I can feel a nauseous ache in my chest. So Kari .... stop writing and go think about oranges instead! Well wouldn't that be smart, but alas, the desire to blog has overwhelmed me and I can't help myself..... ummm yeah ... moving on ....
This last round was rough, but not for good reason. It was mostly due to an acupuncture session that I had the day after chemo. I went to a new acupuncturist since the one I normally go to is out of town. The session started normally enough, but then the acupuncturist said five little words, "I'm going to do aromatherapy." In my relaxed state, I felt that there was something wrong with this statement, but I couldn't put my finger on what it was. The acupuncturist put an essential oil under my nose and instructed me to breathe in 5 times. As I was doing it, I subconsciously knew something was wrong, but I felt funny saying, "ummm... something is wrong breathing in your pure essential oil, but .... sorry... no clue what." After the acupuncturist left the room, it finally dawned on me. It was the same scent (lemon) that I smell right before chemo begins (on top of being super sensitive to smells - thanks to the chemo). My port has rested two weeks when I walk into chemo, so the nurse needs to draw out blood to make sure my port is usable. To draw out the blood she/he first injects saline. Now this saline at first was no big deal. I even scoffed at the warnings of those who had chemo-ed before me; whatever guys - this is a cake walk. But, yet again (you're not allowed to agree) I was very wrong .... so wrong, it's on the verge of hilarious. Well, I now use lemon to cover up the taste of the saline ... and we've come full circle.
The association between lemon and chemo is so strong that I almost can't bear to write this; I can feel a nauseous ache in my chest. So Kari .... stop writing and go think about oranges instead! Well wouldn't that be smart, but alas, the desire to blog has overwhelmed me and I can't help myself..... ummm yeah ... moving on ....
Tuesday, April 12, 2011
Third Opinion
I forgot to tell you about our third opinion.
We spoke to another medical oncologist here in Chicago after we got back from San Fran. When he walked in the room, I said, "Really what we want to do is buy you a beer and pick your brain." He was a top guy who wasn't afraid to admit when he was wrong or didn't know the answer, AND he wasn't afraid to treat us like fellow investigators. Eric and I thought he was absolutely fabulous. Two things we took away from the meeting:
1. Secondary Cancers from radiation are real, and they do happen. This means esophogial cancer, thyroid cancer, breast cancer, and heart disease (not a cancer, but work with me ... it's late.)
2. He took us in their super-secret, medical-personel-only, messy (yes yes ... messy) back room and showed us our CT and PET scans. He's the one that gave us enough knowledge to start talking to radiologists which has been uber helpful (we now feel like we have a better grasp on my particular case).
He recommended .... no radiation.
We spoke to another medical oncologist here in Chicago after we got back from San Fran. When he walked in the room, I said, "Really what we want to do is buy you a beer and pick your brain." He was a top guy who wasn't afraid to admit when he was wrong or didn't know the answer, AND he wasn't afraid to treat us like fellow investigators. Eric and I thought he was absolutely fabulous. Two things we took away from the meeting:
1. Secondary Cancers from radiation are real, and they do happen. This means esophogial cancer, thyroid cancer, breast cancer, and heart disease (not a cancer, but work with me ... it's late.)
2. He took us in their super-secret, medical-personel-only, messy (yes yes ... messy) back room and showed us our CT and PET scans. He's the one that gave us enough knowledge to start talking to radiologists which has been uber helpful (we now feel like we have a better grasp on my particular case).
He recommended .... no radiation.
Pesky pesky pesky decision
Hi everyone! All is well at the Robbins' home front. The pesky decision making process is (hopefully) complete. I think we're going without the radiation. That means two and a half more months of chemo.... wooo hooo! A special shout out to two wonderful radiation oncologists who spent hours with Eric and I going through my scans. Nothing like teaching someone anatomy who has no idea where the spleen is (do you know?). Like I said, awesome radiation oncologists.
We learned from these radiologists that there is some uptake in my "clean" PET scan. This means that there was some metabolic activity in the exact location as my largest nodal mass. This of course worried us. But, my oncologist said that a totally normal PET is unheard of. In addition (Eric and I seem to need to hear the same thing twice before we believe it, especially if it's good news.), Eric talked to a radiologist today who is a friend of a friend, and she said that I had a really good reaction to the chemo. She also called (like ring ring on the telephone) the radiologist at Northwestern who originally read my PET to ask specifically about the residual uptake. How totally cool is that! I love when doctors talk about my scans! The Northwestern radiologist brought my PET up on his screen and took a look at it again; he said that the amount of uptake is insignificant. First, Northwestern doctors are awesome (he brought it up on his screen to look at it again.) Heck, all the doctors I've spoken to (minus one, but poor guy was just uptight.) have been tripping over themselves to be helpful.
Ultimately(this is after the zillion of hours of research and conversations), I attempted to make the decision by trusting my gut which isn't super easy considering my mind is hard to quiet these days.
Chemo number 8 of 12 is tomorrow. If I did the radiation, I think I would have kept my hair, but without it I think I'm going to have to kiss my hair goodbye so keep watching for the updated hair watch. I may never shave it, but I am going to get my wig fitted. Not because I'm stoked about wearing a wig, but because I have the name of an awesome wig designer. Who doesn't want an awesome wig designer to cut and style a wig just for them? Jealous? I know ... it sounds like a too-much-fun-to-pass-up adventure!
We learned from these radiologists that there is some uptake in my "clean" PET scan. This means that there was some metabolic activity in the exact location as my largest nodal mass. This of course worried us. But, my oncologist said that a totally normal PET is unheard of. In addition (Eric and I seem to need to hear the same thing twice before we believe it, especially if it's good news.), Eric talked to a radiologist today who is a friend of a friend, and she said that I had a really good reaction to the chemo. She also called (like ring ring on the telephone) the radiologist at Northwestern who originally read my PET to ask specifically about the residual uptake. How totally cool is that! I love when doctors talk about my scans! The Northwestern radiologist brought my PET up on his screen and took a look at it again; he said that the amount of uptake is insignificant. First, Northwestern doctors are awesome (he brought it up on his screen to look at it again.) Heck, all the doctors I've spoken to (minus one, but poor guy was just uptight.) have been tripping over themselves to be helpful.
Ultimately(this is after the zillion of hours of research and conversations), I attempted to make the decision by trusting my gut which isn't super easy considering my mind is hard to quiet these days.
Chemo number 8 of 12 is tomorrow. If I did the radiation, I think I would have kept my hair, but without it I think I'm going to have to kiss my hair goodbye so keep watching for the updated hair watch. I may never shave it, but I am going to get my wig fitted. Not because I'm stoked about wearing a wig, but because I have the name of an awesome wig designer. Who doesn't want an awesome wig designer to cut and style a wig just for them? Jealous? I know ... it sounds like a too-much-fun-to-pass-up adventure!
Thursday, April 7, 2011
San Fran etc
But .... what about the point of the trip. Well ... the doctor at Stanford said the exact opposite of our doctor ... do the radiation ... ugh... We asked dozens of excellent questions, and - I think - we came away with some good information Definitely no decision though.
Saturday, April 2, 2011
Second Opinion
We bought our flights after midnight last night. Eric, Brennan and I are off to San Francisco today for an appointment at Stanford on Monday. I'm excited to see the sunshine, and I'm glad that this appointment worked out. We were meant to go next week, but the doctor's schedule changed. San Francisco here we come ...!!
Subscribe to:
Posts (Atom)