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.
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