I've had a new development and it is just odd enough that I thought it deserved a blog entry. I've been on the adriamycin/cytoxin chemo mix for two months now. It's been a total of four chemo cycles and I felt like I just about had it figured out until a few days ago. On Monday I woke up with very sore hands and feet. My hands were very red and painful, but the redness looked really different from the usual Dermatomyositis rash that flares up once the steroids from the last infusion have left my system. They are always sore, but now I had a really hard time doing simple things like opening doors or jars, pulling on my pants, tying balloons for my kids (seriously, that one nearly killed me. I prayed for the next 20 minutes that Lily didn't pop her balloon because there was no way my fingers would be able to tie another one.) Pretty much anything that involved the use of my thumbs was a killer.
Later in the morning, I discovered that my feet were just as sore and throughout the course of the day it got harder and harder to stand, let alone walk, without pain. I found that if I wore supportive shoes and tried to limit myself to the carpeted areas, it was a little easier to handle, but it still really hurt. The next day was just as bad. That night I really started looking at my hands and I realized that this wasn't a rash at all. They were bruises. They were starting to turn purple and ran from the base of my forefinger, down the palm and up to the tip of my thumb. Weird.
So then I pulled off my socks and really took a good look at my feet and sure enough there were big purple splotches around the base of the heal. I couldn't figure out what was going on and was even less certain about what to do about it. I was pretty sure it wasn't a Dermatomyositis issue. I'd never had bruises with it before. Pain yes, but not bruises and I didn't remember reading anything that discussed bruising as a problem with Dermatomyositis. I had to do something because if it got any worse, I was going to have to find a wheelchair to roll around in when I went back to work next week.
So this morning I broke down and called one of my angel nurses, leaving a message for her to call me. When she did and I explained the situation and she said, "Wow. That is really weird!" Okay. If I had anything to say about anything and I was the Queen of the World for a day, one of the first things I would do would be to ban that phrase, and anything like unto it, from all medical and health professionals. They would have some sort of microchip embedded in their brain that would zap them anytime they even began to form the words. To them, a statement like that just means, "Wow, that is so interesting! I've never heard that one before. I wonder if we can figure it out. The human body is so amazing! Little mysteries like this are really what make me love my job!" But somewhere between the time that that comment leaves their mouths and actually enters the ears of the patient, it changes into something more like, "I've never heard of that happening before. Are you sure you didn't make it up?" OR "Did you know that a lot of these symptoms are just psychological? People are afraid they will happen so they do. It's probably just in your head." OR (and this is the really scary one for me) "I have no idea why that is happening. I can't help you. I'm afraid you're on your own." That last one is what I actually heard. It's the last thing in the world anyone in pain wants to hear.
Anyway, she spoke with my oncologist and a couple of other doctors and they decided that I really needed to meet with my dermatologist (one of the doctors that initially diagnosed me with Dermatomyositis and has been helping me with those issues for the last year.) So I hung up, had a ten minute pity party over the fact that my Cancer doctors were shoving me off to another doctor because they had no idea how to deal with my latest trauma, called and made an appointment with my dermatologist for tomorrow afternoon and then did what the nerdy librarian girl does every time I get freaked out and panicked and feel like I am completely alone... I sent Elijah to a neighbor's to play, put Lily down for a nap and switched on my laptop to do a little research.
Here's what I learned after doing a few searches on "bruising" and "chemo" on a few of my favorite Cancer sites:
Normally if you are injured, the platelets in your blood stick together, forming a clot that stops the bleeding. Some forms of chemotherapy can inhibit or reduce the number of platelets in the blood by affecting the bone marrow where the platelets are formed. So when you have low platelet levels, you are going to bruise much more easily, sometimes even without any kind of injury.
So I read this and thought that that made perfect sense and was a little confused as to why my nurse didn't mention that bruising could be a common problem with patients undergoing chemotherapy, depending on the kind drug they were on, the platelet levels, etc. In her defense, I was throwing a lot of other stuff at her that may have thrown her off a bit, issues that may have been due to chemo, Dermatomyositis, steroid withdrawal, adrenal gland deficiency, yadda, yadda.
Armed with that little bit of information, I felt a little better, but it still didn't explain why the bruising was just on my hands and feet. I needed to think, so I went to my thinking place. The shower. So I'm sitting there in the shower (yes, I was sitting, feet hurt too much to stand) staring at my hands and feet trying to figure out what was wrong with me. I remember thinking how calloused my feet were even after I used that stupid Ped Egg thing a few days ago. All of a sudden a light came on in my head and I said out loud, to myself, as I am sitting there in the shower, "Marie, you are such an idiot."
Do you know what those Ped Egg things are? You can get them just about anywhere. They look like an egg shaped cheese grater. You use it on your feet if you have dry, rough heels. Several days ago I used one on my feet. I looked at my feet again and saw that most of the bruises were around the base of my heel where I'd used the Ped Egg/cheese grater thing. Then I looked at my hands. The bruise ran mostly along my thumb and up my palm to my forefinger, the exact area where I would have gripped that stupid egg thing.
Well, needless to say, I called back my dermatologist's office and cancelled the appointment. When my nurse called back I explained what I think had happened. She checked my last blood test taken just before my last infusion and they were a little low. They would have been even lower during the Ped Egg incident since it happened shortly after receiving a fresh, cell-killing dose of chemotherapy.
So there you have it. The last two days of pain and misery couldn't even be blamed on Cancer or chemo. It was entirely self-inflicted. Who knew that a little callous-removing would break open all the little blood vessels in my hands and feet and leave me hobbling around the house like a little 80 year old woman for the next week???? Well I guess I do now. Stupid egg thing.
Wednesday, December 29, 2010
Wednesday, December 22, 2010
Half way there!
Today was my fourth of eight chemo treatments. I'm halfway done. With chemo, anyway. The first four treatments were infusions of two different drugs. For the last four treatments I'll do a new drug, so it will be a whole different adventure. Some people say this drug is much easier than the previous, but everyone is different. Different drug, different side effects for different people. So we'll see how it goes.
I don't even have any fun stories to tell you about. My nurse accessed my port beautifully, no stake the in heart sensations. There was no blood letting, resulting in my blood pooled on the floor. No crazy medical tests or procedures. Just another chemo infusion. One thing worthy of note is that my oncologist, after doing her examination said that if she hadn't known exactly where to look for it, she probably wouldn't have been able to find the tumor. It had reduced that much in size after only three infusions. Everyone seemed really excited about that. I wasn't entirely sure why since it really doesn't change anything. We still do surgery. We still do radiation. So I asked her. This is what she said:
It is a good thing that the tumor has gotten much smaller after three treatments because that means that when we go in to do surgery, the surgeon will have a much wider margin between the tumor and the chest wall. When the tumor is larger and the margin is smaller, it is much harder to be certain that they have removed all the cancer cells surrounding the tumor. It is also good because if the chemo treatment has been that effective in killing the Cancer cells in the breast, it has been just as effective in killing any other Cancer cells that may be hiding in other parts of my body that we don't know about.
Okay. So now I understand. Yay! It's smaller!
I don't even have any fun stories to tell you about. My nurse accessed my port beautifully, no stake the in heart sensations. There was no blood letting, resulting in my blood pooled on the floor. No crazy medical tests or procedures. Just another chemo infusion. One thing worthy of note is that my oncologist, after doing her examination said that if she hadn't known exactly where to look for it, she probably wouldn't have been able to find the tumor. It had reduced that much in size after only three infusions. Everyone seemed really excited about that. I wasn't entirely sure why since it really doesn't change anything. We still do surgery. We still do radiation. So I asked her. This is what she said:
It is a good thing that the tumor has gotten much smaller after three treatments because that means that when we go in to do surgery, the surgeon will have a much wider margin between the tumor and the chest wall. When the tumor is larger and the margin is smaller, it is much harder to be certain that they have removed all the cancer cells surrounding the tumor. It is also good because if the chemo treatment has been that effective in killing the Cancer cells in the breast, it has been just as effective in killing any other Cancer cells that may be hiding in other parts of my body that we don't know about.
Okay. So now I understand. Yay! It's smaller!
Friday, December 17, 2010
Let that be a lesson to you...
I learned something this week and thought I'd pass along the wisdom to anyone else who may find themselves in my situation. I'm in habit of shedding whatever headgear I happen to be wearing the minute I get in the house after work, but if anyone stops by, I'll grab whatever scarf or hat I can get on before I answer the door. I guess I'm not entirely comfortable appearing hairless to friends, neighbors, and strangers so I've been keeping a little turban at the front door that I can pull on when I need it. Well, I learned the other night that it would also be a good idea to have them strategically placed in other places throughout the house in the off chance that your five-year old happens to get to the door before you do.
Let me just paint a little picture for you:
I'm in my bedroom. Just put on my big old baggy pajamas and the doorbell rings. In my visitors' defense, it is really only about 7 pm. Perfectly respectable hour. They had no way of knowing that I practically start getting ready for bed the minute I walk in the door. It's pathetic, I know. So, doorbell rings and both Elijah and Lily bolt out to the living room to answer the door before I can stop them. After about 5 seconds, I realize that my little turban is out by the door where the visitors are now waiting for me. I'm standing there in my bedroom in my only somewhat decent pajamas trying to decide if I should hurry and get dressed again. And then there was the problem of trying to find something to cover up my hairlessness with. I decided the latter problem was the most urgent so I just grab a baggy sweatshirt to throw over the pajamas in order to retain a bit of modesty and then begin hunting the room for something to put on my head. There are several scarves in my room, but most of them take a bit of time to tie and even if I could get one on in less that five minutes (I'm still a novice at the scarf tying thing) I thought it would look a little odd to walk out in baggy pjs, an old worn out sweatshirt, and a silk scarf on my head. Turbans and caps are nowhere to be found. I finally pull on this goofy knitted pink beanie hat. The beanie was made with a very loose weave, so it didn't leave much to the imagination. I'm not sure why I even bothered.
So, I walk out in all my glory to greet my neighbor and his three sons. I was actually quite impressed with their composure as I made my entrance. Brown and pink baggy pajama bottoms, about 2 sizes too big (that's why they're so comfortable), grey Clarion University of PA sweatshirt, and a pink knitted beanie hat that would probably be more effective as a colander than a headcovering. Maybe you had to have been there, but take it from me, I was quite the hottie. And, as if that weren't enough to give them a little chuckle, I walked out into the living room to see my darling little angel baby standing there in front of all four of them with my bra proudly looped around her neck.
Well, here's to bonding with the neighbors. Hopefully they got as big a laugh out of it as I'm sure I will someday. :)
Let me just paint a little picture for you:
I'm in my bedroom. Just put on my big old baggy pajamas and the doorbell rings. In my visitors' defense, it is really only about 7 pm. Perfectly respectable hour. They had no way of knowing that I practically start getting ready for bed the minute I walk in the door. It's pathetic, I know. So, doorbell rings and both Elijah and Lily bolt out to the living room to answer the door before I can stop them. After about 5 seconds, I realize that my little turban is out by the door where the visitors are now waiting for me. I'm standing there in my bedroom in my only somewhat decent pajamas trying to decide if I should hurry and get dressed again. And then there was the problem of trying to find something to cover up my hairlessness with. I decided the latter problem was the most urgent so I just grab a baggy sweatshirt to throw over the pajamas in order to retain a bit of modesty and then begin hunting the room for something to put on my head. There are several scarves in my room, but most of them take a bit of time to tie and even if I could get one on in less that five minutes (I'm still a novice at the scarf tying thing) I thought it would look a little odd to walk out in baggy pjs, an old worn out sweatshirt, and a silk scarf on my head. Turbans and caps are nowhere to be found. I finally pull on this goofy knitted pink beanie hat. The beanie was made with a very loose weave, so it didn't leave much to the imagination. I'm not sure why I even bothered.
So, I walk out in all my glory to greet my neighbor and his three sons. I was actually quite impressed with their composure as I made my entrance. Brown and pink baggy pajama bottoms, about 2 sizes too big (that's why they're so comfortable), grey Clarion University of PA sweatshirt, and a pink knitted beanie hat that would probably be more effective as a colander than a headcovering. Maybe you had to have been there, but take it from me, I was quite the hottie. And, as if that weren't enough to give them a little chuckle, I walked out into the living room to see my darling little angel baby standing there in front of all four of them with my bra proudly looped around her neck.
Well, here's to bonding with the neighbors. Hopefully they got as big a laugh out of it as I'm sure I will someday. :)
Saturday, December 11, 2010
I'm not dying!
Friday was my third chemo treatment. Went up early for blood work. They have to make sure your white blood cell count has recovered sufficiently before they kill it off again. I forgot to use the numbing agent over the port so I made them put an IV in my arm. There was no way I was going to experience the whole spike-in-your-heart thing again without some kind of drug to take the edge off it.
After labs were drawn I met with one of my nurses and my oncologist to talk with them about my progress and any side effects I was experiencing from either the anti-nausea meds or the chemo itself. I must have convinced them that I didn't need as much anti-nausea meds as they'd initially given me because they agreed to let me cut them in half almost. So we'll see how this week goes. I'm hoping to alleviate some of the side affects of those drugs without still getting sick.
My oncologist also did a physical exam and both she and the nurse said they felt the tumor had significantly reduced in size. And that was just after 2 chemo treatments. I really thought it had too, but wanted to hear them say it before I mentioned it. It really was big before treatment. Now I can barely find it.
We also discussed the date of my next chemo treatment. My schedule would put it on Christmas Eve. I'm going home to my parents over Christmas so that wasn't going to work. I was debating on whether or not to schedule it a little earlier before Christmas, or a little later after Christmas. The problem is in the first week of my chemo cycle, I'm dealing with all the chemo/anti-nausea meds junk and on the second week of my cycle I'm dealing with the a flare of the Dermatomyositis symptoms because all the steroids have begun to leave my system. So, I was trying to figure out which I'd rather spend Christmas with: Chemo or Dermatomyositis. It's a toss up. I went back and forth several times before I just decided to schedule it on the 22nd. So my family will see me in all my chemo glory. Oh well, at least my kids will be able to play with all their cousins while I'm passed out on the couch.
I've learned a little something this week. I think that many people almost immediately associate the word Cancer with death. I've gotten a couple of odd comments from people. One friend I was whining to about being so cranky all the time said, "You have every right to be cranky. You're fighting for your life!" I wasn't sure what to say to that. Another friend made a comment that it made him so sad to think about young children losing their mother. It's just been really interesting. For me, death has never really been part of the equation here. At least not consciously. Shoved that one back in the old broom closet really fast. Of course, it has been easy to ignore because my doctors have given me no reason to believe this could end my life. At least not in the very near future.
They never could stage my Cancer because I opted to do Chemo prior to surgery. They can't stage it until they go right in with surgery after diagnosis to see if it has gone into the lymph nodes. So they will never really know what stage my Cancer was before treatment. But, because of the countless other tests that I've undergone since I was diagnosed, I know that it is not in my bones or my lungs. That's definitely a good sign that it hasn't spread. I guess for some reason I'm one of the lucky ones. So since the possibility of death hasn't been to much of an issue here--except right after diagnosis. I have to admit that the night after we found out I sat Neil down and told him exactly what he could and couldn't do with my life insurance money. Anyway, since death hasn't ever been a real present thought, it's odd to hear friends and family make comments that that is something that they are concerned about for me.
So if anyone is really worried about that for me, I hope I can set your mind at ease. I'm not dying. At least not any time soon. And if Breast Cancer does end up killing me, I'm at least pretty certain that it won't be this time around. This is just a really big, fat, annoying bump in the road. Nothing more.
After labs were drawn I met with one of my nurses and my oncologist to talk with them about my progress and any side effects I was experiencing from either the anti-nausea meds or the chemo itself. I must have convinced them that I didn't need as much anti-nausea meds as they'd initially given me because they agreed to let me cut them in half almost. So we'll see how this week goes. I'm hoping to alleviate some of the side affects of those drugs without still getting sick.
My oncologist also did a physical exam and both she and the nurse said they felt the tumor had significantly reduced in size. And that was just after 2 chemo treatments. I really thought it had too, but wanted to hear them say it before I mentioned it. It really was big before treatment. Now I can barely find it.
We also discussed the date of my next chemo treatment. My schedule would put it on Christmas Eve. I'm going home to my parents over Christmas so that wasn't going to work. I was debating on whether or not to schedule it a little earlier before Christmas, or a little later after Christmas. The problem is in the first week of my chemo cycle, I'm dealing with all the chemo/anti-nausea meds junk and on the second week of my cycle I'm dealing with the a flare of the Dermatomyositis symptoms because all the steroids have begun to leave my system. So, I was trying to figure out which I'd rather spend Christmas with: Chemo or Dermatomyositis. It's a toss up. I went back and forth several times before I just decided to schedule it on the 22nd. So my family will see me in all my chemo glory. Oh well, at least my kids will be able to play with all their cousins while I'm passed out on the couch.
I've learned a little something this week. I think that many people almost immediately associate the word Cancer with death. I've gotten a couple of odd comments from people. One friend I was whining to about being so cranky all the time said, "You have every right to be cranky. You're fighting for your life!" I wasn't sure what to say to that. Another friend made a comment that it made him so sad to think about young children losing their mother. It's just been really interesting. For me, death has never really been part of the equation here. At least not consciously. Shoved that one back in the old broom closet really fast. Of course, it has been easy to ignore because my doctors have given me no reason to believe this could end my life. At least not in the very near future.
They never could stage my Cancer because I opted to do Chemo prior to surgery. They can't stage it until they go right in with surgery after diagnosis to see if it has gone into the lymph nodes. So they will never really know what stage my Cancer was before treatment. But, because of the countless other tests that I've undergone since I was diagnosed, I know that it is not in my bones or my lungs. That's definitely a good sign that it hasn't spread. I guess for some reason I'm one of the lucky ones. So since the possibility of death hasn't been to much of an issue here--except right after diagnosis. I have to admit that the night after we found out I sat Neil down and told him exactly what he could and couldn't do with my life insurance money. Anyway, since death hasn't ever been a real present thought, it's odd to hear friends and family make comments that that is something that they are concerned about for me.
So if anyone is really worried about that for me, I hope I can set your mind at ease. I'm not dying. At least not any time soon. And if Breast Cancer does end up killing me, I'm at least pretty certain that it won't be this time around. This is just a really big, fat, annoying bump in the road. Nothing more.
Sunday, December 5, 2010
The changing headstyles of Marie
So I've been accumulating scarves. Due to a few skin issues, I haven't been able to use the wig, but I think I'm okay with that. I'm starting to have fun with the scarves. Thought I'd share a few of my favorites.
That's my baby.
I'll post more as I come up with them. It's definitely easier than doing my hair every morning. (Not that I ever actually spent a whole lot of time on my hair.) Maybe I'll just keep the head shaved indefinitely and become the scarf queen. We'll see.
Friday, December 3, 2010
The Grand Tour
Today Neil and I made arrangements for my five-year-old to get a little tour of the Huntsman Cancer Hospital where I'm being treated. Every Cancer patient there is assigned a social worker who assists them and family members in whatever way they need and mine agreed to take Elijah around, show him the infusion room, explain some of the things that go on up there, etc. I think he is handling everything just fine. Mostly because at the ripe old age of five, his most urgent concerns have either something to do with the remote-controlled helicopter he is sure he is getting for Christmas, or whether or not he gets two or three caramels in his lunch. So, needless to say, my Cancer hasn't been much more than a bit of a distraction for him, which is how I think I'd like to keep it, but I still wanted to make sure he had a picture in his head of what was going on when I kept going off to the hospital so he wouldn't be too worried.
After Elijah saw everything he was interested in (the view from the top floor, the crane being used on the new wing of the hospital, the ice cream shop, you know, all the super important stuff), we walked down to the inpatient area of the hospital. After I'm done with chemo, this is where I'll be having my surgery. The Huntsman Hospital is relatively small since its focus is exclusively on Cancer patients. There are two floors with inpatient rooms, one is for surgery patients, the other is for patients in need of more aggressive chemo/radiation treatments that may require an extended stay. Each of those floors has no more than 25 rooms and they are beautiful. The one we went in had the bed in the center of a large room. Directly in front of the bed was a large flat screen television mounted on the wall. To the left of that was a small built-in desk with a phone and beyond that was a private bathroom. To the other side of the bed was a small living room type area complete with three easy chairs, a big picture window with the view of the mountains, and art hung on the walls. I guess if you have to have surgery, you may as well do it in style.
It was a nice day. When we got home I realized I've survived the first week of my second chemo cycle. (Yay! Six more to go!) I think this one has been a little easier. I learned a lot from the first cycle. The first 5 or 6 days after infusion have been the most critical for me. Those are the days when not only the Chemo is wreaking havoc on your entire body, but your body is also trying to deal with some of the not so pleasant side effects of all those wonderful anti-nausea medications. During the first cycle, that first week was miserable. I was exhausted, had constant, horrible heartburn, and plenty of other fun digestive issues. They tell you to drink as much water as possible in order to flush as much of the toxins from your body as possible because to let them sit in your body can cause problems in your liver and other organs down the road. So, that means on top of everything else, you're running to the bathroom every 45 minutes.
So this time around, I tried things a little different, and without going into a whole lot of boring details, I think I have a routine figured out that minimizes everything except the heartburn. So if any of you have any suggestions, I'd love to hear them. My doctors have told me to get Prilosec, but I'm really trying to find some natural remedies first. I'm tired of pumping my system full of drugs to alleviate side effects of other drugs. And yet, even as I'm writing that, I'm realizing that it seems a little silly to get hung up on a fairly mild drug like Prilosec to treat heartburn, when I have consented to allow doctors to pump toxic waste directly into my veins every other week for four months. Hmmm.... Okay, tomorrow I'm off to the drug store. Have a beautiful weekend everyone.
After Elijah saw everything he was interested in (the view from the top floor, the crane being used on the new wing of the hospital, the ice cream shop, you know, all the super important stuff), we walked down to the inpatient area of the hospital. After I'm done with chemo, this is where I'll be having my surgery. The Huntsman Hospital is relatively small since its focus is exclusively on Cancer patients. There are two floors with inpatient rooms, one is for surgery patients, the other is for patients in need of more aggressive chemo/radiation treatments that may require an extended stay. Each of those floors has no more than 25 rooms and they are beautiful. The one we went in had the bed in the center of a large room. Directly in front of the bed was a large flat screen television mounted on the wall. To the left of that was a small built-in desk with a phone and beyond that was a private bathroom. To the other side of the bed was a small living room type area complete with three easy chairs, a big picture window with the view of the mountains, and art hung on the walls. I guess if you have to have surgery, you may as well do it in style.
It was a nice day. When we got home I realized I've survived the first week of my second chemo cycle. (Yay! Six more to go!) I think this one has been a little easier. I learned a lot from the first cycle. The first 5 or 6 days after infusion have been the most critical for me. Those are the days when not only the Chemo is wreaking havoc on your entire body, but your body is also trying to deal with some of the not so pleasant side effects of all those wonderful anti-nausea medications. During the first cycle, that first week was miserable. I was exhausted, had constant, horrible heartburn, and plenty of other fun digestive issues. They tell you to drink as much water as possible in order to flush as much of the toxins from your body as possible because to let them sit in your body can cause problems in your liver and other organs down the road. So, that means on top of everything else, you're running to the bathroom every 45 minutes.
So this time around, I tried things a little different, and without going into a whole lot of boring details, I think I have a routine figured out that minimizes everything except the heartburn. So if any of you have any suggestions, I'd love to hear them. My doctors have told me to get Prilosec, but I'm really trying to find some natural remedies first. I'm tired of pumping my system full of drugs to alleviate side effects of other drugs. And yet, even as I'm writing that, I'm realizing that it seems a little silly to get hung up on a fairly mild drug like Prilosec to treat heartburn, when I have consented to allow doctors to pump toxic waste directly into my veins every other week for four months. Hmmm.... Okay, tomorrow I'm off to the drug store. Have a beautiful weekend everyone.
Sunday, November 28, 2010
Hair or no hair. That was the question.
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.
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.
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.
Friday, October 29, 2010
"You could hide a Buick in there!"
So I am scheduled to start chemo the second week of November. I'm hoping to do it on Thursday afternoon so if am going to get sick, I can do it over the weekend and not have to use all my sick and annual leave. I'm going to try to save some of that for Christmas. Although, the nurses told me that they are getting better and better at preventing nausea so it may not be that bad at all. They did however tell me to be sure to not tell my husband that. I guess they figure that if you have Cancer, you should have the right to milk it just a little bit. I think I can do that. After all, after Neil's brain surgery, it was really quite fun to see the reactions we got when he milked his condition. Okay, maybe I milked it for him. When we built the town home I got the agent to throw in a free upgrade of a banister and handrailing because "My husband recently had brain surgery and sometimes really has difficulty keeping his balance. I'm really concerned about him falling down the stairs." Which was true.... at the time. There was no deception involved. So, anyway, the point being that I'm sure I can find a few ways to milk the situation.
So here's my funny story for the day. I asked my nurse why this 4.5 cm tumor didn't show up on the mammogram I had back in January. I was a little freaked out thinking that I had this super fast growing cancer. Well, apparently mammograms aren't quite as dependable as I thought. If you have particularly dense breast tissue, which I guess I do, the tumor is often hidden and can frequently be missed in a mammogram. Then she tells me that she and a couple of the surgeons on staff were discussing this very thing earlier while reviewing both the mammogram films and one of the surgeons (reffering to the density of the breast tissue) said, "Oh yeah. You could hide a Buick in there."
Now honestly. I had to take issue with that. You all know as well as I do that in the boob department, I have never been Buick material. A Volkswagon Bug, maybe, but not a Buick.
So here's my funny story for the day. I asked my nurse why this 4.5 cm tumor didn't show up on the mammogram I had back in January. I was a little freaked out thinking that I had this super fast growing cancer. Well, apparently mammograms aren't quite as dependable as I thought. If you have particularly dense breast tissue, which I guess I do, the tumor is often hidden and can frequently be missed in a mammogram. Then she tells me that she and a couple of the surgeons on staff were discussing this very thing earlier while reviewing both the mammogram films and one of the surgeons (reffering to the density of the breast tissue) said, "Oh yeah. You could hide a Buick in there."
Now honestly. I had to take issue with that. You all know as well as I do that in the boob department, I have never been Buick material. A Volkswagon Bug, maybe, but not a Buick.
Thursday, October 28, 2010
Rock and Roll
Well here goes. I'm starting a blog. Something I was sure I'd never do. But my recent diagnosis of Breast Cancer changed all that. I'm hoping I will be able to achieve three things with this blog. First, keep friends and family informed on how I'm doing. I don't think I will be able to keep up via email and telephone calls. Two, provide myself an emotional outlet. I'm hoping an occasional hysterical scream into the void of cyberspace will help me keep from taking out my frustrations on my family and coworkers. And finally, to hopefully provide a little hope and humor to those who may be experiencing the same thing.
After recieving the diagnosis, three days ago, October 25, 2010, I allowed myself a brief meltdown and then started figuring out what I needed to do next. I was referred to a general surgeon by my rheumatologist, who is treating me for another condition. That was the first step in meeting with several surgeons, an oncologist, several radiologists and many others who performed MRIs, biopsies, ultrasounds, etc. I have been amazed at how lucky I have been to have found some of the most incredible doctors. Today when I met with my oncologist to discuss my treatment schedule, I was introduced to about 6 different people, almost all of whom gave me a hug upon introduction and then ALL sat with me in this tiny examining room for a two hour discussion about my cancer and treatment options. They were my nurses, surgeons, radiologists, social workers, etc. They were introduced as my "support team."
I've realized over the last couple of days that I have a choice. I can either fall apart and shift the burden of my illness on those around me because I have chosen not to cope with the situation. Or, I can take a proactive, positive approach and do whatever it takes to get better. One of the radiologists I met with today kind of summed up my current feelings on the matter and I think I'm going to use it as my motto. He was about the 57th stranger I'd stripped down for in a 3 hour period. (Really, it was borderline ridiculous. I used to be almost painfully modest, but after today, I honestly think I could whip the girls out for just about any stranger and it wouldn't even phase me. I told Neil that and his response was, "Well there's something every husband would be proud of.") Anyway, radiologist guy was doing an ultrasound of my heart to make sure it was strong enough to handle chemotherapy. He talked to me a little about my condition and when he finished, he turned to me just before he left and said, "Kick its ass." I'm going to repeat that to myself everytime I'm shoved into an MRI machine, poked with what I'm sure are 4 inch needles in the most unusual places, cut open, injected with radioactive chemicals and asked to stand half naked in a room full of strangers.
But it's not all bad. Neil and I sat down the other night and came up with a list of perks to having Breast Cancer. We came up with the following.
1) Free massage and acupuncture treatments for both Neil and I at the Cancer Wellness House downtown for the rest of our lives.....
2) I always felt like I'd spent too much money on that stupid wig I bought the first time my hair fell out. Now I'll get my money's worth.
3) I'll save money on hair care products.
4) My hair only partially fell out last time. When it started growing back, the new hair was curly, but the old hair was still straight, which made for some very interesting hair dos. This time it will all fall out so it will all be curly. This will make for a much easier morning hair routine.
5) My friend Chris told me that she lost 15 pounds during her chemo. Woohoo!
6) When they do reconstruction surgery, they take lumps of fat from other parts of your body. (Double woohoo!!) I've already selected my area of choice. It's a new chunk come to me courtesy of 12 months of steroid treatment.
7) With only a couple of accessories (scarf and eye patch), I can tell people I'm studying to be a pirate. That should do for some entertaining water cooler conversations
So there you have it. I've got all my doctors in place. My chemotherapy is scheduled with surgery and radiation planned afterwards. Here we go. Bring it on. Or in the words of one of my nurses, and now one of my new best friends, "Rock and Roll."
After recieving the diagnosis, three days ago, October 25, 2010, I allowed myself a brief meltdown and then started figuring out what I needed to do next. I was referred to a general surgeon by my rheumatologist, who is treating me for another condition. That was the first step in meeting with several surgeons, an oncologist, several radiologists and many others who performed MRIs, biopsies, ultrasounds, etc. I have been amazed at how lucky I have been to have found some of the most incredible doctors. Today when I met with my oncologist to discuss my treatment schedule, I was introduced to about 6 different people, almost all of whom gave me a hug upon introduction and then ALL sat with me in this tiny examining room for a two hour discussion about my cancer and treatment options. They were my nurses, surgeons, radiologists, social workers, etc. They were introduced as my "support team."
I've realized over the last couple of days that I have a choice. I can either fall apart and shift the burden of my illness on those around me because I have chosen not to cope with the situation. Or, I can take a proactive, positive approach and do whatever it takes to get better. One of the radiologists I met with today kind of summed up my current feelings on the matter and I think I'm going to use it as my motto. He was about the 57th stranger I'd stripped down for in a 3 hour period. (Really, it was borderline ridiculous. I used to be almost painfully modest, but after today, I honestly think I could whip the girls out for just about any stranger and it wouldn't even phase me. I told Neil that and his response was, "Well there's something every husband would be proud of.") Anyway, radiologist guy was doing an ultrasound of my heart to make sure it was strong enough to handle chemotherapy. He talked to me a little about my condition and when he finished, he turned to me just before he left and said, "Kick its ass." I'm going to repeat that to myself everytime I'm shoved into an MRI machine, poked with what I'm sure are 4 inch needles in the most unusual places, cut open, injected with radioactive chemicals and asked to stand half naked in a room full of strangers.
But it's not all bad. Neil and I sat down the other night and came up with a list of perks to having Breast Cancer. We came up with the following.
1) Free massage and acupuncture treatments for both Neil and I at the Cancer Wellness House downtown for the rest of our lives.....
2) I always felt like I'd spent too much money on that stupid wig I bought the first time my hair fell out. Now I'll get my money's worth.
3) I'll save money on hair care products.
4) My hair only partially fell out last time. When it started growing back, the new hair was curly, but the old hair was still straight, which made for some very interesting hair dos. This time it will all fall out so it will all be curly. This will make for a much easier morning hair routine.
5) My friend Chris told me that she lost 15 pounds during her chemo. Woohoo!
6) When they do reconstruction surgery, they take lumps of fat from other parts of your body. (Double woohoo!!) I've already selected my area of choice. It's a new chunk come to me courtesy of 12 months of steroid treatment.
7) With only a couple of accessories (scarf and eye patch), I can tell people I'm studying to be a pirate. That should do for some entertaining water cooler conversations
So there you have it. I've got all my doctors in place. My chemotherapy is scheduled with surgery and radiation planned afterwards. Here we go. Bring it on. Or in the words of one of my nurses, and now one of my new best friends, "Rock and Roll."
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