So I shaved my head about a week ago on a Friday evening. I ran around the house most of the weekend in little hats or turbans. Shortly after I found out the hair was going to be coming out again, I found a little website called http://www.headcovers.com/. I love it. I bought a few different things as options to the wig. The Sunday night after I was officially hairless, I put on my wig and wandered around the house for a little while to get used to it again before I had to wear it to work the next day. After ten minutes I was ready to scratch my head raw. It was awful. My scalp is still a little enflamed and itchy from my Dermatomyositis, but now there is no light hair buffer between the skin and wig and it was a just unbearable. I knew I couldn't wear the wig to work the next day. I'd last an hour tops and then would just have to run around bald the rest of the day. As entertaining as that might have been to watch people's reactions, I learned fairly quickly that your head gets really cold with no hair, especially in the winter, so I wasn't sure I was up for it.
So...I got out a couple of scarfs that I have and started experimenting. I went to work the next day in a scarf wrapped around my head. It was really quite comfortable. Later that day I picked up a long, oblong shaped scarf, one that was meant to wrap around your neck and figured out how to wrap it in a turban of sorts and wore that one the next day. I think I'm sold. When it's all said and done, for me the scarves are the way to go.
I'm not speaking for every female Cancer patient that has to do this, but for me, this is how it panned out:
When I wore a wig for several months earlier this year there were always some people who knew it was a wig (because I'd told them) and some people who didn't. I was always the most anxious about the people who didn't know. Constantly wondering if my hair was on straight, if they could tell it was fake, if I was one of those people that a total stranger could look at and think, "Oh, that is such a bad hairpiece." Then there were the people who already knew. These were the people that you caught staring at you when they thought you weren't looking, trying to figure out that if I hadn't told them it was a wig, if they would have known on their own. They were always looking for some sign like the fact that my hairline was always moving, making my bangs a lot longer one day than they were the day before. That was sometimes a little tiring. Sometimes I found myself just saying to them, "What? Is my hair on crooked?" Sometimes they laughed, sometimes they were a little embarrased. By that time I really didn't care too much.
With the scarf, there is none of that. People look at you, they know you have no hair, and they move on with life. Much simpler. Now my only problem is the challenge of coming up with new head styles. Many of my coworkers said they were impressed with the scarves and said they wanted me to teach them how to tie them that way. I said, "Sure! But you're going to have to shave your heads first. It doesn't quite work the same if you have hair." I'm not sure how many takers I'll have.
Could be fun to see how far I can push HR's dress code at work though. My sister-in-law sent me a bright red "Doo-Rag." (That's what my husband calls it. Not sure why.) I love it. It's so comfortable. Makes me look like a biker. I think I just might wear that to work sometime this week and see what happens.
Sunday, November 28, 2010
We don't want to inject tiny concrete particles into your heart...
Okay, so where were we.... Blood-taking nurse had done her damage and walked me into the smaller infusion room. They have two. The first one is quite large, with about 15-20 recliners. Both times, I end up up in the smaller one that has about 6 beds. It's nice. So I go into the the smaller one, pick my recliner of choice and meet my chemo nurse. She pulls out my port and hooks me up to my first drug. For the first four chemo cycles, I get four different drugs. The first two are mixed in one IV bag: Aloxi and Decadron. These aren't actually the chemo drugs. They are a couple of medications to either prevent (Aloxi) or relieve (Decadron) nausea. They give these to you first in case you are someone that is going to react to the chemo drugs pretty quickly.
I had to explain to chemo-nurse right up front that I was a librarian, and therefore a bit of a book nerd so I was going to ask her a lot of questions. I made her show me the name of the drug in each bag before she hooked me up to it. I knew all the drugs before but this time I came prepared with my little mini library so I could read about them as they were being pumped into my veins. So after she showed me the drug I pulled out my book about my drugs and started reading.
After my veins had sucked up all the nausea meds, chemo-nurse came over with the second drug. This was chemo drug #1, Adriamycin. It's the one that looks like Kool-Aid that makes you pee red for a day or so. Nice. This is also the one that they have to administer to by pushing it into the IV through a syringe, rather than just hooking it up to a drip line. That is because with a syringe, there is less chance of leakage. Leakage would be bad with this drug. It's the one that can eat through tissue, hence chemo-nurse having to don full HazMat gear to administer it. She showed me the name of the drug and I and sat back and to read about this particular toxic waste being injected into my blood stream.
Third and final drug was Cytoxin. Also a chemo drug. This one went into a drip line. I noticed that in between each drug, she flushed my IV line with a saline solution. I'm not sure why, but this childhood memory flashed into my head of my mom getting annoyed with us at the dinner table when we whined about our food touching on our plates. She would say, "It all ends up in the same place. What difference does it make if it is touching before it gets there?" As a little side note, I used this same reasoning on my husband once when he got all disgusted after I dished up his dinner because certain things were touching. He looked at me like I was a freak of nature, but as a girl that grew up in a family who thought it was normal to mix your roast beef, potatoes and gravy, and corn all together before eating, it made perfect sense. In fact it was my favorite breakfast meal to have pancakes, topped with a fried egg, applesauce on top of that and maple syrup over top of everything. Yum! (I'm adding that one as a bonus because I'm pretty sure that a good majority of my Erickson family is in the process of dry heaving right now.) :)
So, anyway, chemo-nurse was making sure nothing was touching before it went in. I asked her why. I'm so glad I did. She said that some of the chemo drugs react with each other in odd ways so they want to make sure that the line is completely clear of one drug before they inject another. She went on to say (this is the good part) that once she actually witnessed when a drug was administered into an IV without the prior drug being completely flushed from the line first and there was some sort of chemical reaction in the line and the two drugs solidified into a concrete like substance. It was so hard that when they bent the IV tube it snapped. "So we flush," she said. "We don't want to be sending small particles of concrete right into your heart." (My port catheter runs up from my chest, over my collar bone and down an artery (or vein?) almost right into my heart) No we don't, I thought. "Thanks for flushing," I told her.
So that was it for chemo cycle number two. I think this one will be a little easier than the first. I learned a lot with the first cycle. I think I've figured out how to better manage the side effects of the anti-nausea meds through some changes in diet and exercise routine, which should alleviate some of the discomfort. I'm also going to talk with my oncologist about the current drug regimen to see if there are some drugs that I don't really need. They were really worried about the nausea and so they loaded the anti-nausea meds on me. I'm not sure I need all of them, so we'll have a little discussion next week. But, that can wait for another post.
I went up to the hospital today for my $6000 Neulasta injection. Honestly, who gets all that money?!? It's the drug that kick starts white blood cell production, since the chemo killed most of them off. It allows them to keep my chemo treatments on schedule and close together. Without it, they would have to wait sometimes months between chemo treatments, seriously decreasing the effectiveness of the the chemo. I had an interesting conversation with that nurse about the changes in Cancer treatments in even just the last five years. She mentioned that she'd been in the medical field, specifically Cancer treatment, for 15 years and the things they did 15 years ago seem barbaric to her now. Again, probably more information than you wanted, but like I said, I'm a nerd, so if you're going to going to read my updates, I hope you don't mind a few educational tidbits thrown in there.
After I came home, my friend Darlene was at my house and she and my husband whipped up a slightly belated Thanksgiving dinner while I went in my bedroom and took a nap. It was really quite a lovely day. YAY for the drug that made it possible for me to enjoy Thanksgiving dinner with my family one day after chemo! BOO to the same drug that made me want to have THREE helpings of everything! (See? Steroids. It's the whole love/hate thing,) Although I'm happy to announce that I limited myself to just one helping. Except for the blueberry pie. Any of you who have had the blessed opportunity to taste my husband's homemade blueberry pie couldn't fault me for that one indulgence. Hands down, the best blueberry pie on the face of the planet.
That's all I've got for tonight. Thanks everyone for your concern and well wishes. It really helps more than you know.
I had to explain to chemo-nurse right up front that I was a librarian, and therefore a bit of a book nerd so I was going to ask her a lot of questions. I made her show me the name of the drug in each bag before she hooked me up to it. I knew all the drugs before but this time I came prepared with my little mini library so I could read about them as they were being pumped into my veins. So after she showed me the drug I pulled out my book about my drugs and started reading.
After my veins had sucked up all the nausea meds, chemo-nurse came over with the second drug. This was chemo drug #1, Adriamycin. It's the one that looks like Kool-Aid that makes you pee red for a day or so. Nice. This is also the one that they have to administer to by pushing it into the IV through a syringe, rather than just hooking it up to a drip line. That is because with a syringe, there is less chance of leakage. Leakage would be bad with this drug. It's the one that can eat through tissue, hence chemo-nurse having to don full HazMat gear to administer it. She showed me the name of the drug and I and sat back and to read about this particular toxic waste being injected into my blood stream.
Third and final drug was Cytoxin. Also a chemo drug. This one went into a drip line. I noticed that in between each drug, she flushed my IV line with a saline solution. I'm not sure why, but this childhood memory flashed into my head of my mom getting annoyed with us at the dinner table when we whined about our food touching on our plates. She would say, "It all ends up in the same place. What difference does it make if it is touching before it gets there?" As a little side note, I used this same reasoning on my husband once when he got all disgusted after I dished up his dinner because certain things were touching. He looked at me like I was a freak of nature, but as a girl that grew up in a family who thought it was normal to mix your roast beef, potatoes and gravy, and corn all together before eating, it made perfect sense. In fact it was my favorite breakfast meal to have pancakes, topped with a fried egg, applesauce on top of that and maple syrup over top of everything. Yum! (I'm adding that one as a bonus because I'm pretty sure that a good majority of my Erickson family is in the process of dry heaving right now.) :)
So, anyway, chemo-nurse was making sure nothing was touching before it went in. I asked her why. I'm so glad I did. She said that some of the chemo drugs react with each other in odd ways so they want to make sure that the line is completely clear of one drug before they inject another. She went on to say (this is the good part) that once she actually witnessed when a drug was administered into an IV without the prior drug being completely flushed from the line first and there was some sort of chemical reaction in the line and the two drugs solidified into a concrete like substance. It was so hard that when they bent the IV tube it snapped. "So we flush," she said. "We don't want to be sending small particles of concrete right into your heart." (My port catheter runs up from my chest, over my collar bone and down an artery (or vein?) almost right into my heart) No we don't, I thought. "Thanks for flushing," I told her.
So that was it for chemo cycle number two. I think this one will be a little easier than the first. I learned a lot with the first cycle. I think I've figured out how to better manage the side effects of the anti-nausea meds through some changes in diet and exercise routine, which should alleviate some of the discomfort. I'm also going to talk with my oncologist about the current drug regimen to see if there are some drugs that I don't really need. They were really worried about the nausea and so they loaded the anti-nausea meds on me. I'm not sure I need all of them, so we'll have a little discussion next week. But, that can wait for another post.
I went up to the hospital today for my $6000 Neulasta injection. Honestly, who gets all that money?!? It's the drug that kick starts white blood cell production, since the chemo killed most of them off. It allows them to keep my chemo treatments on schedule and close together. Without it, they would have to wait sometimes months between chemo treatments, seriously decreasing the effectiveness of the the chemo. I had an interesting conversation with that nurse about the changes in Cancer treatments in even just the last five years. She mentioned that she'd been in the medical field, specifically Cancer treatment, for 15 years and the things they did 15 years ago seem barbaric to her now. Again, probably more information than you wanted, but like I said, I'm a nerd, so if you're going to going to read my updates, I hope you don't mind a few educational tidbits thrown in there.
After I came home, my friend Darlene was at my house and she and my husband whipped up a slightly belated Thanksgiving dinner while I went in my bedroom and took a nap. It was really quite a lovely day. YAY for the drug that made it possible for me to enjoy Thanksgiving dinner with my family one day after chemo! BOO to the same drug that made me want to have THREE helpings of everything! (See? Steroids. It's the whole love/hate thing,) Although I'm happy to announce that I limited myself to just one helping. Except for the blueberry pie. Any of you who have had the blessed opportunity to taste my husband's homemade blueberry pie couldn't fault me for that one indulgence. Hands down, the best blueberry pie on the face of the planet.
That's all I've got for tonight. Thanks everyone for your concern and well wishes. It really helps more than you know.
Friday, November 26, 2010
Blood Bath
Today was my second chemo treatment. Neil and I got there and waited a few minutes to go into the infusion room. They were going to use the port for my Chemo this time. Last time they just used an IV in my arm. The port allows for easier access and guarantees only one poke. Often later in your chemo treatments, your veins start to collapse and it gets harder and harder to get an IV in an arm or hand vein so the port can be really nice. I'm told it is the Cadillac of IV's. I'm not entirely convinced.
Two weeks ago, before I started my first Chemo session, I first needed to do bloodwork and then a breast MRI. They decided that rather than poke me in the arm for the bloodwork and then again later in the chest to access the port for Chemo, they'd just access the port in the morning to draw the blood and then leave it in for the chemo later in the day. They really did have good intentions.... It just didn't really work out.
First, they had given me a prescription for a topical numbing agent for me to put over the port an hour before they tried to access it. So being a good little Cancer patient, and more than happy to do whatever necessary to alleviate pain in any form, I applied the cream and put a little square of saran wrap over it. I couldn't figure out why they wanted me to do the saran wrap thing, but they did. So I did. When I got there all ready for them to access the port the nurse said, "Oh you didn't put nearly enough on there. You need to gob at least a good tablespoon on it and cup it in the saran wrap so it doesn't get all over your clothes." Okay. That might have been good to know AN HOUR AGO!!!
So she proceeded to access the port. I have to stop and mention that over the last year and a half, I've gotten to be pretty good with needles. It's kind of ironic. I used to have to psyche myself up for weeks in order to get the nerve to go give blood. However, recent events have cured me of my fear of needles. I'm estimating that I've been given the poke for either blood tests, IVs, or injections of some sort around 35 to 40 times in the last 18 months. So the ironic thing is that now that I don't have issues with needles, I can't give blood. Ever again. Okay so back to the port. The port needle is no ordinary needle. I got a good close look at it and it is about an inch long and FAT. I've gotten into the habit of watching them insert all the needles, but this one I couldn't. Not only because of how fat it is, but because where they were sticking it. In my chest. Almost directly over my heart.
I could tell that the nurse was a little nervous about accessing the port when I hadn't applied the numbing agent properly. She got everything ready, the area above the port all sterilized and needle needle poised and ready, and then the dialog went something like this:
NURSE: Are you ready?
ME: Yes.
NURSE: Okay, on the count of three. One. Two.... This might hurt a little.
ME: Okay.
NURSE: Alright, here we go. One. Two.... Oh, wait let me get this guaze placed a little better. Is that better?
ME: Sure.
NURSE: Okay, hear it comes.
Nothing happens. Nothing happens.
ME: (Thinking: WOULD YOU JUST SHOVE IT IN ALREADY?!?!?!)
[POKE] (Honestly, that really just isn't an adequate word for the sensation of someone shoving, what felt like a metal spike into what could have very well been my heart)
ME: HOLY CRAP, THAT HURT!!! (That was outloud. Really outloud. She was very apologetic.)
It really did. It hurt like a bugger. And this is coming from someone that barely feels the needles anymore.
So, anyway. Once it was in, I didn't feel it. Until it was time for the breast MRI. It was a little uncomfortable because I had to lie on my stomach, putting pressure right on the port during the MRI. The radiologist was a little confused. Said he'd never done a breast MRI with a chest port that had been accessed. (Meaning, it had a big metal needle sticking out of it.) But, he went ahead and started. 20 minutes into a 45 minute MRI that was a little uncomfortable, to say the least, he pulls me out, tells me that the needle is throwing off all the images and they need to pull out the port IV and start over. Lovely. Needless to say, I was just a little bit cranky by the time we were done.
When the breast MRI was done and we went to the infusion room for my chemo, they got ready to access the port again. Not a chance. I told them to stick a needle in my arm. So they did.
So that was all two weeks ago at my first Chemo treatment. This morning, as I got ready for the second treatment, I squeezed out literally half of the tube of Lidocane onto a little square of saran wrap and slapped it on my chest over my port. When I first got the prescription for this cream, I was a little confused why the doctor gave me 12 refills for 8 Chemo treatments. Now I understand.
So this morning we get there, I sit down in my recliner and the little nurse comes over. This is the first of two nurses for this morning's session. The first nurse's job is to access my port and draw blood to be sent down to the lab. The lab does a rush job to check and see if my white and red blood cell counts have had a chance to recover since my last Chemo treatment. If they have, we go ahead with the next Chemo treatment. If they haven't, they consider putting it off for a few days.
So the blood-taking nurse wheeled over her little table of equipment and started unloading all sorts of gloves, needles, and other paraphernalia. She kept dropping things and Neil and another man across the room kept picking them up for her. Once she got everything ready, she wiped the goop off my chest and said, "On the count of three." I couldn't watch, "One, two, three. Okay, it's in." I didn't even feel the poke. Beautiful. I decided I really loved her. But then, we had a little problem. She couldn't get any blood out. Apparently a clot had formed over the catheter. That was fairly common she told me. So for the next 10 minutes she kept trying to flush the line to dislodge the clot, she asked me to cough, raise my arm, raise my other arm, lie down on my back, my left side, my right side. Still nothing. So then she said, "I think we need to put in a bigger needle."
I was a little annoyed, but considering I didn't feel anything the first time around, it didn't seem like a big deal. If the nurse two weeks ago had said that to me, I think I would have demanded a morphine drip before I let her near me again. But, this time around was different, so I told her to go ahead. She pulled out the first needle and got one out that looked like it was closer to two inches long. (I probably wasn't, but I feel I have the right to use a little creative license at this point.) After getting that one ready and dropping a lot more stuff on the floor (I think she was getting a little flustered by this time) she shoved the second one in. This one hurt a little. I think my numbing cream was wearing off. The second needle didn't work either. Now I was just annoyed. So after all that, she put a needle in my arm so they could draw the blood for the lab work.
This really should have been a Part I/Part II entry, because I'm only about halfway done, but hang in there. It gets even better.
Now remember, I have had my blood drawn a lot in the last year or so. In almost all of those cases, it has been beautifully done, takes about 45 seconds, needle in and out and I barely feel it. Didn't have the same experience with blood-taking nurse today. She prepped me to put the needle in my arm. I was watching this one very closely. First of all, the needle hurt going in. Those never hurt anymore. That was the first sign that there was going to be trouble. Normally, the needle goes in, they slide in the plastic catheter that goes into the vein, remove the needle, pop on a tube, and the blood goes into the tube. She slid in the catheter, pulled out the needle and didn't have a tube ready. I'm not really sure what she was waiting for. Well, of course, the blood started coming out of the catheter and pooling in the crook of my arm. She tried to stop the bloodflow by putting pressure on the vein just above the catheter, but it kept coming out. Within a couple seconds the blood was spilling over both sides of my arm and onto the arm of the chair and onto the floor. I start moving my jacket that was sitting in my lap so I don't get it all stained by my own blood that is now flowing freely from the catheter that she still hasn't capped with a plastic tube. Neil and I just keep looking at each other thinking, "Is anyone else seeing this?" Blood-taking nurse finally calls behind her casually for a wet cloth so she can start mopping up the blood. After that cloth is a mess, Neil walks over to the other nurse at the desk and says, "We're going to need a few more wet cloths." I think it was at this point that the other nurse began to get a little alarmed. So anyway, blood-taking nurse finally gets it capped off and my area cleaned up. She then goes back to my port and injects a solution that will dissolve the blood clot so they can use it for chemo. Why she didn't do that before she drained a pint of my blood on the floor just to fill a tiny little tube, I'll never know. Needless to say, during all this I made a mental note of her name. She won't be touching me again.
Well, I haven't even gotten to chemo and chemo-nurse and this is already probably a lot more information than you wanted for a simple update, and the sleepy drugs are starting to kick in. I have a new favorite drug. It's called Lorazepam. I'll tell you all about it tomorrow.
Two weeks ago, before I started my first Chemo session, I first needed to do bloodwork and then a breast MRI. They decided that rather than poke me in the arm for the bloodwork and then again later in the chest to access the port for Chemo, they'd just access the port in the morning to draw the blood and then leave it in for the chemo later in the day. They really did have good intentions.... It just didn't really work out.
First, they had given me a prescription for a topical numbing agent for me to put over the port an hour before they tried to access it. So being a good little Cancer patient, and more than happy to do whatever necessary to alleviate pain in any form, I applied the cream and put a little square of saran wrap over it. I couldn't figure out why they wanted me to do the saran wrap thing, but they did. So I did. When I got there all ready for them to access the port the nurse said, "Oh you didn't put nearly enough on there. You need to gob at least a good tablespoon on it and cup it in the saran wrap so it doesn't get all over your clothes." Okay. That might have been good to know AN HOUR AGO!!!
So she proceeded to access the port. I have to stop and mention that over the last year and a half, I've gotten to be pretty good with needles. It's kind of ironic. I used to have to psyche myself up for weeks in order to get the nerve to go give blood. However, recent events have cured me of my fear of needles. I'm estimating that I've been given the poke for either blood tests, IVs, or injections of some sort around 35 to 40 times in the last 18 months. So the ironic thing is that now that I don't have issues with needles, I can't give blood. Ever again. Okay so back to the port. The port needle is no ordinary needle. I got a good close look at it and it is about an inch long and FAT. I've gotten into the habit of watching them insert all the needles, but this one I couldn't. Not only because of how fat it is, but because where they were sticking it. In my chest. Almost directly over my heart.
I could tell that the nurse was a little nervous about accessing the port when I hadn't applied the numbing agent properly. She got everything ready, the area above the port all sterilized and needle needle poised and ready, and then the dialog went something like this:
NURSE: Are you ready?
ME: Yes.
NURSE: Okay, on the count of three. One. Two.... This might hurt a little.
ME: Okay.
NURSE: Alright, here we go. One. Two.... Oh, wait let me get this guaze placed a little better. Is that better?
ME: Sure.
NURSE: Okay, hear it comes.
Nothing happens. Nothing happens.
ME: (Thinking: WOULD YOU JUST SHOVE IT IN ALREADY?!?!?!)
[POKE] (Honestly, that really just isn't an adequate word for the sensation of someone shoving, what felt like a metal spike into what could have very well been my heart)
ME: HOLY CRAP, THAT HURT!!! (That was outloud. Really outloud. She was very apologetic.)
It really did. It hurt like a bugger. And this is coming from someone that barely feels the needles anymore.
So, anyway. Once it was in, I didn't feel it. Until it was time for the breast MRI. It was a little uncomfortable because I had to lie on my stomach, putting pressure right on the port during the MRI. The radiologist was a little confused. Said he'd never done a breast MRI with a chest port that had been accessed. (Meaning, it had a big metal needle sticking out of it.) But, he went ahead and started. 20 minutes into a 45 minute MRI that was a little uncomfortable, to say the least, he pulls me out, tells me that the needle is throwing off all the images and they need to pull out the port IV and start over. Lovely. Needless to say, I was just a little bit cranky by the time we were done.
When the breast MRI was done and we went to the infusion room for my chemo, they got ready to access the port again. Not a chance. I told them to stick a needle in my arm. So they did.
So that was all two weeks ago at my first Chemo treatment. This morning, as I got ready for the second treatment, I squeezed out literally half of the tube of Lidocane onto a little square of saran wrap and slapped it on my chest over my port. When I first got the prescription for this cream, I was a little confused why the doctor gave me 12 refills for 8 Chemo treatments. Now I understand.
So this morning we get there, I sit down in my recliner and the little nurse comes over. This is the first of two nurses for this morning's session. The first nurse's job is to access my port and draw blood to be sent down to the lab. The lab does a rush job to check and see if my white and red blood cell counts have had a chance to recover since my last Chemo treatment. If they have, we go ahead with the next Chemo treatment. If they haven't, they consider putting it off for a few days.
So the blood-taking nurse wheeled over her little table of equipment and started unloading all sorts of gloves, needles, and other paraphernalia. She kept dropping things and Neil and another man across the room kept picking them up for her. Once she got everything ready, she wiped the goop off my chest and said, "On the count of three." I couldn't watch, "One, two, three. Okay, it's in." I didn't even feel the poke. Beautiful. I decided I really loved her. But then, we had a little problem. She couldn't get any blood out. Apparently a clot had formed over the catheter. That was fairly common she told me. So for the next 10 minutes she kept trying to flush the line to dislodge the clot, she asked me to cough, raise my arm, raise my other arm, lie down on my back, my left side, my right side. Still nothing. So then she said, "I think we need to put in a bigger needle."
I was a little annoyed, but considering I didn't feel anything the first time around, it didn't seem like a big deal. If the nurse two weeks ago had said that to me, I think I would have demanded a morphine drip before I let her near me again. But, this time around was different, so I told her to go ahead. She pulled out the first needle and got one out that looked like it was closer to two inches long. (I probably wasn't, but I feel I have the right to use a little creative license at this point.) After getting that one ready and dropping a lot more stuff on the floor (I think she was getting a little flustered by this time) she shoved the second one in. This one hurt a little. I think my numbing cream was wearing off. The second needle didn't work either. Now I was just annoyed. So after all that, she put a needle in my arm so they could draw the blood for the lab work.
This really should have been a Part I/Part II entry, because I'm only about halfway done, but hang in there. It gets even better.
Now remember, I have had my blood drawn a lot in the last year or so. In almost all of those cases, it has been beautifully done, takes about 45 seconds, needle in and out and I barely feel it. Didn't have the same experience with blood-taking nurse today. She prepped me to put the needle in my arm. I was watching this one very closely. First of all, the needle hurt going in. Those never hurt anymore. That was the first sign that there was going to be trouble. Normally, the needle goes in, they slide in the plastic catheter that goes into the vein, remove the needle, pop on a tube, and the blood goes into the tube. She slid in the catheter, pulled out the needle and didn't have a tube ready. I'm not really sure what she was waiting for. Well, of course, the blood started coming out of the catheter and pooling in the crook of my arm. She tried to stop the bloodflow by putting pressure on the vein just above the catheter, but it kept coming out. Within a couple seconds the blood was spilling over both sides of my arm and onto the arm of the chair and onto the floor. I start moving my jacket that was sitting in my lap so I don't get it all stained by my own blood that is now flowing freely from the catheter that she still hasn't capped with a plastic tube. Neil and I just keep looking at each other thinking, "Is anyone else seeing this?" Blood-taking nurse finally calls behind her casually for a wet cloth so she can start mopping up the blood. After that cloth is a mess, Neil walks over to the other nurse at the desk and says, "We're going to need a few more wet cloths." I think it was at this point that the other nurse began to get a little alarmed. So anyway, blood-taking nurse finally gets it capped off and my area cleaned up. She then goes back to my port and injects a solution that will dissolve the blood clot so they can use it for chemo. Why she didn't do that before she drained a pint of my blood on the floor just to fill a tiny little tube, I'll never know. Needless to say, during all this I made a mental note of her name. She won't be touching me again.
Well, I haven't even gotten to chemo and chemo-nurse and this is already probably a lot more information than you wanted for a simple update, and the sleepy drugs are starting to kick in. I have a new favorite drug. It's called Lorazepam. I'll tell you all about it tomorrow.
Friday, November 19, 2010
The dark, dusty broom closet at the back of my head.
We got out the clippers today. I'd been prepping my 5 year old for a couple of weeks now, not sure how he would react. He just jumped up on his little stool, grabbed the scissors and started hacking away. When he'd done all the damage he felt he could do with the scissors, Neil showed him how to use the clippers. I think he got quite a bit of it himself, but Neil finished it up. When it was all off and on the floor, Elijah said, "Mom, you look really cute!" Adorable little liar, isn't he? I've always felt that honesty was highly overrated. I'm glad to see Elijah is picking up on some of my philosophies of life.
I've had a lot of people tell me that they are impressed with my attitude and how well I'm dealing with this whole situation. I should probably try to clear this one up. I don't think the way I'm handling this is at all admirable. I don't think it has much to do with attitude at all. I think it is sheer denial. I have this little dark broom closet in the back of my head where I shove everything that scares me. We all have one. It's where we stick thoughts about what we would do if some pervert grabbed our kid on the way home from school or what would happen if an elderly parent who is living alone was hurt and unable to get help. Our broom closets are filled with things like, "What if my spouse/child/parent/sibling dies in an accident, or loses his job?" Or "What if my kid ends up being a drug addict or a felon?" That sort of stuff. Well, needless to say, my broom closet is getting a little crowded. It's packed to the gills with little tidbits of information that I've come across in the last several weeks. Things like the fact that Breast Cancer is potentially fatal or that some forms of chemotherapy can cause heart problems or leukemia later in life or even the fact that the chemicals that they are pumping into my veins are so toxic, if the nursing staff get them on their clothing, they have to be thrown into the hazardous waste bins and destroyed. Yup, I don't think it will be too long before I'm going to have to add another wing to my little broom closet. So it has nothing to do with a good attitude or bravery. I'm just really good at burying things I don't want to think about.
And another thing. When we first got the Cancer diagnosis, Neil asked me, "So what do you think we're supposed to learn this time around that we didn't learn with the first two medical crises of our marriage?" Being someone who believes that there is a grand plan for us, I really believe that things like this happen to people for a reason. I'm not going to presume to think that I know what the reasons are. Ever. But in my particular case, I have a suspicion that it may have something to do with the Lord "encouraging" me to be a little more humble and reliant on Him. The problem is that it's not working. This is the third time He's tried and I'm just as mad as ever at this whole situation. This morning I stormed out of the house with a couple of terse remarks to my husband and he said, "What are you mad at?" I didn't answer him, but this is what I was screaming in my head: "I AM ANGRY AT SO MANY THINGS RIGHT NOW I COULDN'T EVEN BEGIN TO COUNT THEM LET ALONE EXPLAIN TO YOU WHAT THEY ARE!!!!!!"
So there it is. I'm not brave, don't have a good attitude, and am not humbly submitting to the will of the Lord. The scary thing is, I think I better figure out how to do either one or all of these things because when you already have a track record like ours (2004, Chiari Malformation; 2009, Dermatomyositis; 2010, Breast Cancer), whatever the next thing coming down the pike is is probably going to be a little terrifying.
I'm going to have to figure out some way NOT to lock that one away in my broom closet.
I've had a lot of people tell me that they are impressed with my attitude and how well I'm dealing with this whole situation. I should probably try to clear this one up. I don't think the way I'm handling this is at all admirable. I don't think it has much to do with attitude at all. I think it is sheer denial. I have this little dark broom closet in the back of my head where I shove everything that scares me. We all have one. It's where we stick thoughts about what we would do if some pervert grabbed our kid on the way home from school or what would happen if an elderly parent who is living alone was hurt and unable to get help. Our broom closets are filled with things like, "What if my spouse/child/parent/sibling dies in an accident, or loses his job?" Or "What if my kid ends up being a drug addict or a felon?" That sort of stuff. Well, needless to say, my broom closet is getting a little crowded. It's packed to the gills with little tidbits of information that I've come across in the last several weeks. Things like the fact that Breast Cancer is potentially fatal or that some forms of chemotherapy can cause heart problems or leukemia later in life or even the fact that the chemicals that they are pumping into my veins are so toxic, if the nursing staff get them on their clothing, they have to be thrown into the hazardous waste bins and destroyed. Yup, I don't think it will be too long before I'm going to have to add another wing to my little broom closet. So it has nothing to do with a good attitude or bravery. I'm just really good at burying things I don't want to think about.
And another thing. When we first got the Cancer diagnosis, Neil asked me, "So what do you think we're supposed to learn this time around that we didn't learn with the first two medical crises of our marriage?" Being someone who believes that there is a grand plan for us, I really believe that things like this happen to people for a reason. I'm not going to presume to think that I know what the reasons are. Ever. But in my particular case, I have a suspicion that it may have something to do with the Lord "encouraging" me to be a little more humble and reliant on Him. The problem is that it's not working. This is the third time He's tried and I'm just as mad as ever at this whole situation. This morning I stormed out of the house with a couple of terse remarks to my husband and he said, "What are you mad at?" I didn't answer him, but this is what I was screaming in my head: "I AM ANGRY AT SO MANY THINGS RIGHT NOW I COULDN'T EVEN BEGIN TO COUNT THEM LET ALONE EXPLAIN TO YOU WHAT THEY ARE!!!!!!"
So there it is. I'm not brave, don't have a good attitude, and am not humbly submitting to the will of the Lord. The scary thing is, I think I better figure out how to do either one or all of these things because when you already have a track record like ours (2004, Chiari Malformation; 2009, Dermatomyositis; 2010, Breast Cancer), whatever the next thing coming down the pike is is probably going to be a little terrifying.
I'm going to have to figure out some way NOT to lock that one away in my broom closet.
Tuesday, November 16, 2010
It all started when.... Part II
Okay, so I'd officially been diagnosed with Dermatomyositis. This was back in late November of 2009. My doctors (rheumatologist and dermatologist) immediately put me on super doses of steroids as well as a couple antimalarials and immunosuppresants. (Just some other drugs that are supposed to be somewhat effective in treating the skin issues in these kinds of autoimmune diseseases). It provided relief within days. I still had a bad rash and had a hard time moving my legs, but the swelling had gone down and the muscle pain was all but gone. Most people have a love/hate relationship with Prednisone. It has some wicked side effects, but it sure does work its magic.
As the drugs were doing their thing, Dr. Koening began scheduling me for just about every Cancer screening known to man. All of them. Apparently there is some connection between Cancer and Dermatomyositis. They don't quite understand it but a significant percentage of Dermatomyositis patients are soon after diagnosed with some form of Cancer, so they do all the screenings just to be safe. I wasn't too concerned about it. It was just a formality. He was just being overly thorough.
The mammogram was one of the first screenings we did back in January of 2010. It was clean. I also underwent a CT scan of the abdomen to check for any unusual masses there. They found a small cyst like mass in my liver and wanted me to do a follow up MRI to make sure it wasn't anything more significant. My doctors even seemed sure that it was nothing so though they insisted I schedule the MRI, they didn't rush me. I didn't end up doing it until just a month ago. Dr. Koening called me a couple of days after and said that the mass in my liver was nothing, but the MRI happened to pick up the lower part of my breast revealing a 4 cm lump that didn't show on the mammogram last January. He wanted me to come in for an ultrasound and biopsy. We did them on the same day. Ultrasound confirmed that the mass wasn't just fluid. It had portions of tissue that were blood fed. The biopsy determined that the tissue was malignant and THAT is how this all started.
It's kind of odd the way it all worked. I never would have had the Cancer screenings if I hadn't first been diagnosed with Dermatomyositis. And they wouldn't have caught the lump in the breast if they hadn't inadvertantly shot a little high on MRI of the liver. Crazy thing is that the current theory among all my doctors now (dermatologist, rheumatologist, oncologist, yadda, yadda) is that the Cancer was there all along and has been growing for years now safely hidden away in my dense breast tissue (could hide a buick, remember?) but the Cancer kind of kick started the Dermatomyositis which revealed everything. AND, with successful treatment of the Cancer, the Dermatomyositis will just go away. Here's to hoping they are right.
As the drugs were doing their thing, Dr. Koening began scheduling me for just about every Cancer screening known to man. All of them. Apparently there is some connection between Cancer and Dermatomyositis. They don't quite understand it but a significant percentage of Dermatomyositis patients are soon after diagnosed with some form of Cancer, so they do all the screenings just to be safe. I wasn't too concerned about it. It was just a formality. He was just being overly thorough.
The mammogram was one of the first screenings we did back in January of 2010. It was clean. I also underwent a CT scan of the abdomen to check for any unusual masses there. They found a small cyst like mass in my liver and wanted me to do a follow up MRI to make sure it wasn't anything more significant. My doctors even seemed sure that it was nothing so though they insisted I schedule the MRI, they didn't rush me. I didn't end up doing it until just a month ago. Dr. Koening called me a couple of days after and said that the mass in my liver was nothing, but the MRI happened to pick up the lower part of my breast revealing a 4 cm lump that didn't show on the mammogram last January. He wanted me to come in for an ultrasound and biopsy. We did them on the same day. Ultrasound confirmed that the mass wasn't just fluid. It had portions of tissue that were blood fed. The biopsy determined that the tissue was malignant and THAT is how this all started.
It's kind of odd the way it all worked. I never would have had the Cancer screenings if I hadn't first been diagnosed with Dermatomyositis. And they wouldn't have caught the lump in the breast if they hadn't inadvertantly shot a little high on MRI of the liver. Crazy thing is that the current theory among all my doctors now (dermatologist, rheumatologist, oncologist, yadda, yadda) is that the Cancer was there all along and has been growing for years now safely hidden away in my dense breast tissue (could hide a buick, remember?) but the Cancer kind of kick started the Dermatomyositis which revealed everything. AND, with successful treatment of the Cancer, the Dermatomyositis will just go away. Here's to hoping they are right.
Monday, November 15, 2010
It all started when...
So June of last year, about 6 weeks after the angel baby was born I got a little red spot on my nose. Looked like a zit except it didn't go away. Started to spread over my nose, cheeks, and chin. Got worse in the sun and was itchy. Went to a doctor and she said it was some sort of allergic reaction, threw some steroids at me and sent me on my way. After 3 weeks when it was back again (her drugs really never did much more than fade it a little) I went back to her she threw some more drugs at me and told me I should probably go see a dermatologist. Went to see a dermatologist. He wasn't sure what it was either. Gave me a script for some steroid cream. Went to see an allergist. He was determined to diagnose me with some sort of food allergy. I remember specifically asking him, "Is there any way that this could possibly be caused by something other than allergies?" "Oh, no," he said. "This is a textbook case of allergies." The big idiot.
So my brother suggested that I see a naturopath of sorts that had helped my sister in law with some food allergies. I was pretty desperate by that time so I went to see him. I don't remember what his actual title was but I will forever lovingly refer to him as my witch doctor. Not because he cured my "allergies," but because he was the first to even suggest that I have some blood work done to see if there were anything odd going on there. He mentioned that many autoimmune diseases first manifest themselves as a rash.
Well, at this point, I was far beyond the rash. My whole face was red, my eyes were swollen, arms and hands were red and patchy and I was starting to experience extreme muscle pain and weakness. I couldn't kneel down on the floor because it felt like my thighs were on fire. I couldn't push myself up from a sitting position because I had no strength in my legs. Oh, and my hair was falling out.
So.... I went back to my primary care, demanded a blood test and a whole load of steroids for the road. A few days later they called me and said I had elevated levels of ANA antibodies in my blood. Simply put, something was wrong and I needed to see a rhuematologist, but oh, by the way, the local rheumys were booked out 6 months.
I have learned over the last 10 years that fear is a pretty powerful motivator and you can move mountains when you're scared enough. So I went into research mode and had pretty much diagnosed myself with Lupus. I went back to the local dermatologist I had seen earlier, who was very nice, but unable to help, and asked him to give me what is called a Lupus Band Test. It is a diagnositic procedure that would get me one step closer to knowing if Lupus was actually my problem. If I could determine that, I would know where to go next. He told me that he didn't have the equipment to do that kind of sophisticated test but would refer me to a collegue who could see me in about 8 weeks. Okay, better than 6 months, but after about 2 weeks I was so miserable and could barely drag myself out of bed in the mornings. My eyes were horribly swollen and hair was thinning quickly. I called the receptionist for this new dermatologist and basically cried over the phone telling her that I wasn't sure I would make it another month. She said there was no way possible she could get me in, but she did some calling and found an opening with another dermatologist, who specialized in autoimmune diseases up at the University of Utah in two days. I took it.
Two days later I went up to the University Hospital in all my glory, no makeup to cover up the leprosy, no glasses to cover up the swollen eyes. I was some kind of hottie, that's for sure. Anyway, they took me into an examining room where I told my whole history to a medical assistant and then told him that I thought I had Lupus and wanted to be tested for Lupus. He went out to "discuss" with the dermatologist that I was waiting to see. About 15 minutes later, Dr. Sontheimer walks in, pulls up chair and says right away, "It's not lupus."
Well, I am just staring at him thinking, "If you even mention the word 'allergies,' I'm am going postal this very second and you are going to see a fit of violence unlike any other." Lucky for him he didn't. He said, "You have an autoimmune disease called Dermatomyositis." Well that stopped me for a second. If I hadn't been so miserable, I might have been amused by the fact that he almost seemed excited about my diagnosis. I found out later that he actually was fairly interested in this particular condition, he's done a bit of research and has contributed to the medical literature in this area. He even whipped out a camera and said, "You know, we are a teaching hospital, would you mind if I took some photos for my students?" Fine. Whatever.
Long story short, it is a condition very similar to Lupus. Don't really know what causes it, but basically one day my immune system up and decided it hated me and started attacking healthy skin and muscle tissue. I asked him if I still needed to see a rheumatologist and he said, "Well, as a matter of fact, we are doing a combined clinic today and I have a collegue working with me who is a rheumatologist and I'd love to bring him in to meet you." I just about started crying. Ten minutes later Dr. Koening walked in. Between the three of us we figured out what my treatment should be to give me some immediate relief and then where to go from there. And even better, they set up regular appointments with me (no more 6 month waiting periods)and different tests to monitor my progress. Dr. Koening especially called me after each test and spent a good 20 to 30 minutes on the phone with me explaining what the results meant, how he thought we should proceed and asked how I felt about the progress of my treatment. I'm sure I'm sounding a little melodramatic, but these two men saved me and I will be forever endebted to them. Thank God for good doctors. There truly are so few of them.
So I'm about 5000 words into my explanation of how this all started and I haven't even gotten to the part that has to do with cancer, but I'm getting there. Just will have to wait. Going to bed.
So my brother suggested that I see a naturopath of sorts that had helped my sister in law with some food allergies. I was pretty desperate by that time so I went to see him. I don't remember what his actual title was but I will forever lovingly refer to him as my witch doctor. Not because he cured my "allergies," but because he was the first to even suggest that I have some blood work done to see if there were anything odd going on there. He mentioned that many autoimmune diseases first manifest themselves as a rash.
Well, at this point, I was far beyond the rash. My whole face was red, my eyes were swollen, arms and hands were red and patchy and I was starting to experience extreme muscle pain and weakness. I couldn't kneel down on the floor because it felt like my thighs were on fire. I couldn't push myself up from a sitting position because I had no strength in my legs. Oh, and my hair was falling out.
So.... I went back to my primary care, demanded a blood test and a whole load of steroids for the road. A few days later they called me and said I had elevated levels of ANA antibodies in my blood. Simply put, something was wrong and I needed to see a rhuematologist, but oh, by the way, the local rheumys were booked out 6 months.
I have learned over the last 10 years that fear is a pretty powerful motivator and you can move mountains when you're scared enough. So I went into research mode and had pretty much diagnosed myself with Lupus. I went back to the local dermatologist I had seen earlier, who was very nice, but unable to help, and asked him to give me what is called a Lupus Band Test. It is a diagnositic procedure that would get me one step closer to knowing if Lupus was actually my problem. If I could determine that, I would know where to go next. He told me that he didn't have the equipment to do that kind of sophisticated test but would refer me to a collegue who could see me in about 8 weeks. Okay, better than 6 months, but after about 2 weeks I was so miserable and could barely drag myself out of bed in the mornings. My eyes were horribly swollen and hair was thinning quickly. I called the receptionist for this new dermatologist and basically cried over the phone telling her that I wasn't sure I would make it another month. She said there was no way possible she could get me in, but she did some calling and found an opening with another dermatologist, who specialized in autoimmune diseases up at the University of Utah in two days. I took it.
Two days later I went up to the University Hospital in all my glory, no makeup to cover up the leprosy, no glasses to cover up the swollen eyes. I was some kind of hottie, that's for sure. Anyway, they took me into an examining room where I told my whole history to a medical assistant and then told him that I thought I had Lupus and wanted to be tested for Lupus. He went out to "discuss" with the dermatologist that I was waiting to see. About 15 minutes later, Dr. Sontheimer walks in, pulls up chair and says right away, "It's not lupus."
Well, I am just staring at him thinking, "If you even mention the word 'allergies,' I'm am going postal this very second and you are going to see a fit of violence unlike any other." Lucky for him he didn't. He said, "You have an autoimmune disease called Dermatomyositis." Well that stopped me for a second. If I hadn't been so miserable, I might have been amused by the fact that he almost seemed excited about my diagnosis. I found out later that he actually was fairly interested in this particular condition, he's done a bit of research and has contributed to the medical literature in this area. He even whipped out a camera and said, "You know, we are a teaching hospital, would you mind if I took some photos for my students?" Fine. Whatever.
Long story short, it is a condition very similar to Lupus. Don't really know what causes it, but basically one day my immune system up and decided it hated me and started attacking healthy skin and muscle tissue. I asked him if I still needed to see a rheumatologist and he said, "Well, as a matter of fact, we are doing a combined clinic today and I have a collegue working with me who is a rheumatologist and I'd love to bring him in to meet you." I just about started crying. Ten minutes later Dr. Koening walked in. Between the three of us we figured out what my treatment should be to give me some immediate relief and then where to go from there. And even better, they set up regular appointments with me (no more 6 month waiting periods)and different tests to monitor my progress. Dr. Koening especially called me after each test and spent a good 20 to 30 minutes on the phone with me explaining what the results meant, how he thought we should proceed and asked how I felt about the progress of my treatment. I'm sure I'm sounding a little melodramatic, but these two men saved me and I will be forever endebted to them. Thank God for good doctors. There truly are so few of them.
So I'm about 5000 words into my explanation of how this all started and I haven't even gotten to the part that has to do with cancer, but I'm getting there. Just will have to wait. Going to bed.
Sunday, November 14, 2010
Easy does it.
So today was okay. Hopefully it was the worst of my "bad" days after infusion. If not, tomorrow back at work should be pretty interesting. I was pretty tired the whole day today but popped an anti-nausea pill everytime I started feeling sick and they worked quite well.
For those of you who are wondering, hair is still there. Typically starts coming off anywhere between days 10 and 16 of first infusion. I'd rather not wait for it to slowly fall out on my pillow or clog up the shower drain so we'll be having a head shaving party sometime this week at my house. I think I've even gotten Elijah willing to get it started.
There's a bunch of things I've been wanting to get down on the blog. Questions I don't want to have to answer over and over again like how this all got started, how they found the lump, what is myositis, what is the dark corner in the back of your head. It will all get down here eventually, but not tonight. Tonight I'm tired and hopefully have taken enough drugs to knock me out cold until exactly 5 am.
For those of you who are wondering, hair is still there. Typically starts coming off anywhere between days 10 and 16 of first infusion. I'd rather not wait for it to slowly fall out on my pillow or clog up the shower drain so we'll be having a head shaving party sometime this week at my house. I think I've even gotten Elijah willing to get it started.
There's a bunch of things I've been wanting to get down on the blog. Questions I don't want to have to answer over and over again like how this all got started, how they found the lump, what is myositis, what is the dark corner in the back of your head. It will all get down here eventually, but not tonight. Tonight I'm tired and hopefully have taken enough drugs to knock me out cold until exactly 5 am.
Saturday, November 13, 2010
One down, seven to go.
So results of the last CT scan were done to check out the abnormality on my spine and/or lung. It is nothing, so onward and upward from here out.
Most everything I've done so far since the first day of dignosis has been for a clinical study I participated in. I have had a bunch of tests done, a needle biospy of the tumor and breast MRI. Then I start taking increased dosages of a drug called Valproic Acid (nice name isn't it?) over a regimin of ten days with blood work interspersed to see how the drug was affecting the cancer cells. After I finished with the drugs, I had another needle biospy and breast MRI and then was done with the study. Woohooo! Now I finally get to start my own treatment. (A different guy called me a couple of days ago to tell me that I was eligible to participate in another study. I told him I was all studied out. That last breast MRI tapped me of all altruistic juices for a while.)
So, that was the morning part of the day yesterday. In the afternoon I meet with my oncologist and little group of nurses to go over the chemo schedule, the types of chemo drugs, what to expect in the way of side affects, what to do to help alleviate certain side affects etc. They loaded me up with prescriptions and went over in great detail how and when I should take them.
Then Neil and I headed over to the infusion room. By that time I was exhausted. It was about 4 pm. They got my "suite" all ready and then brought me in to choose my easy chair, covered me up with warm blankets and got me something to drink. Neil went up to our new favorite bistro to bring us down a sandwich since we hadn't eaten since breakfast. About 5:45, my little buzzer started going off and they unhooked me and let me go home. I slept like the dead last night. Apparently they are pretty free with the sleepy drugs. I think I'm going to love my infusion team
We got home about 7 and found that my angel neice and her husband had picked up my kids and had them all fed (thanks to a wonderful neighbor who had brought over dinner). Thank you Meagan, Zeb and the Deckers.
Today I went back over for my Neulasta. The day after each chemo treatment I will go back for my injection of this drug. Since the chemo drugs are killing off a lot of white blood cells, and they are the cells that help keep you from getting sick, the purpose of the Neulasta is to stimulate the bone cells where the white bood cells are made to get them to produce more than the usual amount of white blood cells. Hopefully this will keep risk of infection in the midst of flu season to a minimum. But, I think I am becoming a bit of a germophobe regardless. Lily will probaby not be making her official entrance to the nursery until next spring, my church attendence will be sporadic at best, and at work, I may just become somewhat of an office hermit.... for the second time this year.
Well, that's it for today. I've been told that the worst of each chemo treatment comes within the first or second day after chemo so we'll just have to wait out tomorrow to get a good idea on how this particular drug cocktail is going to go over the next couple of months. I feel better though knowing that I'm on my way. The unknown and anticipation is always worse for me. So one treatment down, seven more to go!!
Most everything I've done so far since the first day of dignosis has been for a clinical study I participated in. I have had a bunch of tests done, a needle biospy of the tumor and breast MRI. Then I start taking increased dosages of a drug called Valproic Acid (nice name isn't it?) over a regimin of ten days with blood work interspersed to see how the drug was affecting the cancer cells. After I finished with the drugs, I had another needle biospy and breast MRI and then was done with the study. Woohooo! Now I finally get to start my own treatment. (A different guy called me a couple of days ago to tell me that I was eligible to participate in another study. I told him I was all studied out. That last breast MRI tapped me of all altruistic juices for a while.)
So, that was the morning part of the day yesterday. In the afternoon I meet with my oncologist and little group of nurses to go over the chemo schedule, the types of chemo drugs, what to expect in the way of side affects, what to do to help alleviate certain side affects etc. They loaded me up with prescriptions and went over in great detail how and when I should take them.
Then Neil and I headed over to the infusion room. By that time I was exhausted. It was about 4 pm. They got my "suite" all ready and then brought me in to choose my easy chair, covered me up with warm blankets and got me something to drink. Neil went up to our new favorite bistro to bring us down a sandwich since we hadn't eaten since breakfast. About 5:45, my little buzzer started going off and they unhooked me and let me go home. I slept like the dead last night. Apparently they are pretty free with the sleepy drugs. I think I'm going to love my infusion team
We got home about 7 and found that my angel neice and her husband had picked up my kids and had them all fed (thanks to a wonderful neighbor who had brought over dinner). Thank you Meagan, Zeb and the Deckers.
Today I went back over for my Neulasta. The day after each chemo treatment I will go back for my injection of this drug. Since the chemo drugs are killing off a lot of white blood cells, and they are the cells that help keep you from getting sick, the purpose of the Neulasta is to stimulate the bone cells where the white bood cells are made to get them to produce more than the usual amount of white blood cells. Hopefully this will keep risk of infection in the midst of flu season to a minimum. But, I think I am becoming a bit of a germophobe regardless. Lily will probaby not be making her official entrance to the nursery until next spring, my church attendence will be sporadic at best, and at work, I may just become somewhat of an office hermit.... for the second time this year.
Well, that's it for today. I've been told that the worst of each chemo treatment comes within the first or second day after chemo so we'll just have to wait out tomorrow to get a good idea on how this particular drug cocktail is going to go over the next couple of months. I feel better though knowing that I'm on my way. The unknown and anticipation is always worse for me. So one treatment down, seven more to go!!
Tuesday, November 9, 2010
"We're pretty certain it is nothing to worry about."
Got results back from the 2nd needle biopsy and bone scan. Needle biopsy I didn't care too much about, it was just to give them the information they needed to confirm that I really was an eligible candidate for their research study. It was the bone scan that I was particularly interested in. I went up to Huntsman yesterday for more bloodwork and checked to see what the results said. Remember, with that scan the radioactive agent will accumulate around any fast growing or abnormal cells. The radiologist report says, "Mild asymmetric uptake of tracer involving the L4 vertebral body." That's just fancy doctor speak for the radioactive stuff was having a little party on the lower part of my spine OR part of my left lung, they're not sure exactly. That's not necessarily good. We want them to be a little more anti-social, more evenly distributed throughout the body. So, they thought we should make sure we know what that is before we start chemo. I am NOT putting off chemo so I'm going up tomorrow for another CT scan to see if they can get more information on the radioactive party at the lower end of my spine. They should have the results by Thursday so I can go ahead with chemo on Friday.
When my nurse told me about the scan results she said, "We're pretty certain it is nothing to worry about." Well, by my count, I've already heard that three times in the last several months and yet here I am, undergoing every test known to man about to start chemo therapy in a few days. I think she was a little confused when I started to laugh.
When my nurse told me about the scan results she said, "We're pretty certain it is nothing to worry about." Well, by my count, I've already heard that three times in the last several months and yet here I am, undergoing every test known to man about to start chemo therapy in a few days. I think she was a little confused when I started to laugh.
Wednesday, November 3, 2010
I'm radioactive!
Today was the bone scan. Early this morning I was injected with the radioactive agent and let loose to roam throughout the hospital while it circulated. I was told to drink tons of water to flush it out of my bladder. I guess if you let even small amounts of radioactive chemicals sit in your bladder, that can be bad. Go figure... Neil and I hung out in the Cancer Wellness Center and I made arrangements to meet with a dietician during my first chemo treatment. She's going to help with with food ideas that will help me alleviate chemo side effects.
While we had time to burn I also contacted my insurance company to ask a few questions about anything that needed to be preauthorized, coverage, etc. They assigned me to a nurse who was going to follow my treatment and act as my consultant as I was arranging treatment, working with providers and organizing bills and claims. I love my insurance agency. Really. Love.
Next was the breast MRI. If any of you have been in an MRI machine you'll know how fun it can be, but this time I was lying on my stomach with the girls hanging through two little holes in the bed thing. Well, really they were actually MEDIUM sized holes. (As I'm writing this, I'm remembering that I gave this blog address to my bishop and relief society president to distribute to friends in the ward....hmmm. Oh well.) So anyway, I was expecting the unusual MRI position. What I wasn't expecting was to walk into the MRI room and see three big guys standing there waiting for me and I'm thinking, "Oh come on!!!! You couldn't find one woman in the whole radiology department to do this???" I guess not. I've lost all sense of dignity.
So that's it for a few days. After I get the results from the last needle biopsy I will start the two week research trial for the new drug and then be ready to start chemo on the 12th of this month.
While we had time to burn I also contacted my insurance company to ask a few questions about anything that needed to be preauthorized, coverage, etc. They assigned me to a nurse who was going to follow my treatment and act as my consultant as I was arranging treatment, working with providers and organizing bills and claims. I love my insurance agency. Really. Love.
Next was the breast MRI. If any of you have been in an MRI machine you'll know how fun it can be, but this time I was lying on my stomach with the girls hanging through two little holes in the bed thing. Well, really they were actually MEDIUM sized holes. (As I'm writing this, I'm remembering that I gave this blog address to my bishop and relief society president to distribute to friends in the ward....hmmm. Oh well.) So anyway, I was expecting the unusual MRI position. What I wasn't expecting was to walk into the MRI room and see three big guys standing there waiting for me and I'm thinking, "Oh come on!!!! You couldn't find one woman in the whole radiology department to do this???" I guess not. I've lost all sense of dignity.
So that's it for a few days. After I get the results from the last needle biopsy I will start the two week research trial for the new drug and then be ready to start chemo on the 12th of this month.
Tuesday, November 2, 2010
Anethstesia is my friend.
Well, today was a fun day. Bright and early we headed up to the University Hospital for a little surgery. They inserted a Port-a-Cath in my chest just under the skin above my heart. They will use this port for my chemo treatments. I opted for this rather than to have them insert an IV every time I had treatment. The IV in the hand was such a hideous experience during both of my c-section surgeries. It took the nurses 10-12 pokes before they got it in. By the time they actually found the vein the towels were soaked with blood and there was a puddle on the floor. Literally. At least with Elijah there was. Anyway so that is why I went for the port. However, the little anesthesiologist that inserted my pre-operative IV (who looked like she was 16) did a beautiful job. I barely even felt it. Could of hugged her right there. The biggest difference was that she took a tiny little needle and injected an even tinier bit of numbing agent so I didn't feel the big needle even go in. Brilliant. AND, she got it on the FIRST POKE!!! So, why don't they do that when you have a c-section? After she was done, I was starting to second guess the whole port decision but... oh well. We did it. I officially have a breast implant. Well kind of. The surgery went well. They didn't put me completely out. They gave me just enough of the sleepy drugs to make me happy about the fact they were cutting me open and inserting a foreign device in my chest. I love anethstesia.
After the little surgical experience we went and had lunch at the hosptial restaurant. Just so you know, the Huntsman Cancer Hospital has a pretty hip little bistro. Neil had the stroganoff and I opted for the stir fry. Very tasty. And speaking food, the University Hospital has a pretty decent cafeteria. I'm a regular patron. I'm addicted to their brownies.
Okay, so after lunch we had a little blood drawn (and by little, I mean about 3 quarts), and went off for my needle biopsy. I'm participating in a clinical study. They're doing research on a particular medication (normally used to treat seizure patients) to see how it changes the cancer cells. So as part of that, I got to throw in a few extra needle biopsies and blood tests, yadda, yadda. The needle biopsy is all sorts of fun. This was my second. One more to go after a couple weeks on the study drug. The doctor's name who does the biopsy is Joanna. We're good friends now.
So that was it for today. Oh, in between our lovely little medical procedures, we meandered over to the Cancer Learning Center. I couldn't resist. I'm a librarian. I had to check out the cancer library. We found a couple of children's books about kids whose moms have cancer and used them as a way of trying to help Elijah understand a little of what was going on. I think it hit him this time. He got a little weepy. The first time we talked to him about it, he just said, "Yay! We get to get your wig out again!" Hmmmm. Either he's coping just fine or we need to do a little more explaining.....
So tomorrow we will be up at the hospital again for most of the day (yay, brownies!!). I'll start with a bone scan. For those of you who aren't familiar with those (and I truly hope you're not, at least by experience), they inject a small amount of radioactive chemicals into your blood stream. You hang out for a couple of hours (hmm, maybe neil and I will have time for a free acupuncture session and the Wellness Center) and then they do a full body scan after the chemicals have had time to completely distribute themselves throughout your body. The chemicals attach themselves to unusually fast growing cells (cancer cells). On the film, those portions appear as bright spots, so they can tell if there is cancer in other places in the body. They will be focusing on the bones.
After that, we have a breast MRI. Stay tuned. I'm sure I'll have a few stories after that one.
After the little surgical experience we went and had lunch at the hosptial restaurant. Just so you know, the Huntsman Cancer Hospital has a pretty hip little bistro. Neil had the stroganoff and I opted for the stir fry. Very tasty. And speaking food, the University Hospital has a pretty decent cafeteria. I'm a regular patron. I'm addicted to their brownies.
Okay, so after lunch we had a little blood drawn (and by little, I mean about 3 quarts), and went off for my needle biopsy. I'm participating in a clinical study. They're doing research on a particular medication (normally used to treat seizure patients) to see how it changes the cancer cells. So as part of that, I got to throw in a few extra needle biopsies and blood tests, yadda, yadda. The needle biopsy is all sorts of fun. This was my second. One more to go after a couple weeks on the study drug. The doctor's name who does the biopsy is Joanna. We're good friends now.
So that was it for today. Oh, in between our lovely little medical procedures, we meandered over to the Cancer Learning Center. I couldn't resist. I'm a librarian. I had to check out the cancer library. We found a couple of children's books about kids whose moms have cancer and used them as a way of trying to help Elijah understand a little of what was going on. I think it hit him this time. He got a little weepy. The first time we talked to him about it, he just said, "Yay! We get to get your wig out again!" Hmmmm. Either he's coping just fine or we need to do a little more explaining.....
So tomorrow we will be up at the hospital again for most of the day (yay, brownies!!). I'll start with a bone scan. For those of you who aren't familiar with those (and I truly hope you're not, at least by experience), they inject a small amount of radioactive chemicals into your blood stream. You hang out for a couple of hours (hmm, maybe neil and I will have time for a free acupuncture session and the Wellness Center) and then they do a full body scan after the chemicals have had time to completely distribute themselves throughout your body. The chemicals attach themselves to unusually fast growing cells (cancer cells). On the film, those portions appear as bright spots, so they can tell if there is cancer in other places in the body. They will be focusing on the bones.
After that, we have a breast MRI. Stay tuned. I'm sure I'll have a few stories after that one.
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