Had my CT scan today after my second round of chemo and I will make this a short and sweet post, leaving you to enjoy the New Year with the following two sentences:
The retroperitoneal adenopathy has resolved. No new measurable disease is present.
xo,
Lisa
Friday, December 28, 2012
Tuesday, December 4, 2012
Tis the season!
Happy holidays everyone! This time of year can be a hectic time for everyone, running around with extra shopping to do and places to go and people to see. It's my favorite time of year, and this year is no exception. I've started physical therapy for my lymphedema in my right leg, and in just three sessions (and some heavy bandaging in between), my leg has lost 6680 ml of fluid. That's equivalent to over THREE 2-liter bottles of soda. In one leg! Needless to say, I'm thrilled with the progress! I have therapy twice a week for 4 weeks total and then we reevaluate. My therapist said I may have crossed over into phase 2 of lymphedema, which is irreparable, but I still hold out hope we can reverse this as the cancer goes down in those lymph nodes. Either way, the therapy is working quickly and even if I have to use a compression stocking, I'm happy I won't be walking around with all that fluid in my leg forever!
My next CT is December 28th. It's going to be a long day of blood work, the CT, a check-in with my doc, and possible chemo. Dr. Dotan mentioned possibly stepping down my treatment if the scan shows positive results, but I would really like to try to kick this thing into remission in full force, so I'm going to ask for another round of three more treatment sessions. If she agrees, I'm going to try and push back my next treatment until January 2 or so. I really don't want to welcome the New Year hooked up to my 5-FU pump. I have pork and sauerkraut to make!
So the chemo brain is coming on pretty strong these days. My body is definitely showing signs of wear and chemo brain is one of those signs. A study just came out verifying that chemo brain is real. If you're interested in what it entails, you can find the link here. I find that I can't keep my thoughts straight, forget words a lot, and have periods where I feel, for lack of a better word, lost. It's not so overwhelming that it interrupts my life, but it is something to consider. I have to have reminders now for everything or else things will get missed. I just have to remember where I put those reminders.
Wait, what was I saying?
So I'm going to sign off for now and enjoy the rest of my December with nothing but physical therapy appointments until the 28th. To all of my readers, visible and silent, have a wonderful, happy, loving, holiday season. Be grateful for what you have and thankful for those in your lives. Put the bickering away for this month and enjoy the season. If you stop and take a breath, you may realize what the spirit of the season is all about, and learn to enjoy it.
Happy holidays all!
xo,
Lisa
PS - To those of you who have not gotten your flu shot yet, won't stay home when you're sick, or can't cough properly into your sleeve when you're around others, not to mention do not know how to wash your hands thoroughly (and often), I kindly ask that you stay clear of me until you're well. I have two sickies in my house already and find it amusing that I'm NOT one of them! My white blood cells have their cells full. Let's not overload them, k? Smooches!
My next CT is December 28th. It's going to be a long day of blood work, the CT, a check-in with my doc, and possible chemo. Dr. Dotan mentioned possibly stepping down my treatment if the scan shows positive results, but I would really like to try to kick this thing into remission in full force, so I'm going to ask for another round of three more treatment sessions. If she agrees, I'm going to try and push back my next treatment until January 2 or so. I really don't want to welcome the New Year hooked up to my 5-FU pump. I have pork and sauerkraut to make!
So the chemo brain is coming on pretty strong these days. My body is definitely showing signs of wear and chemo brain is one of those signs. A study just came out verifying that chemo brain is real. If you're interested in what it entails, you can find the link here. I find that I can't keep my thoughts straight, forget words a lot, and have periods where I feel, for lack of a better word, lost. It's not so overwhelming that it interrupts my life, but it is something to consider. I have to have reminders now for everything or else things will get missed. I just have to remember where I put those reminders.
Wait, what was I saying?
So I'm going to sign off for now and enjoy the rest of my December with nothing but physical therapy appointments until the 28th. To all of my readers, visible and silent, have a wonderful, happy, loving, holiday season. Be grateful for what you have and thankful for those in your lives. Put the bickering away for this month and enjoy the season. If you stop and take a breath, you may realize what the spirit of the season is all about, and learn to enjoy it.
Happy holidays all!
xo,
Lisa
PS - To those of you who have not gotten your flu shot yet, won't stay home when you're sick, or can't cough properly into your sleeve when you're around others, not to mention do not know how to wash your hands thoroughly (and often), I kindly ask that you stay clear of me until you're well. I have two sickies in my house already and find it amusing that I'm NOT one of them! My white blood cells have their cells full. Let's not overload them, k? Smooches!
Wednesday, November 14, 2012
The reality of it all
I bristle when the word “gift” is used in the same sentence as “cancer.” There is no upside to having a life-threatening illness. It can ruin lives, friendships, families and dreams, and trying to focus too much on finding a silver lining can trivialize real suffering. I would never have voluntarily chosen to go down this path. But like any other struggle, cancer has changed me. - Suleika Jaouad
I posted the link to Suleika Jaouad's latest blog on my Facebook page. Here it is for those who do not have (or choose not to have) Facebook access. She has been someone I've turned to over the length of my treatment for solace. She writes the words that often roll around in my head, and it brings me comfort to know she is out there, as are so many others, fighting the fight no one should. Shortly after reading it, I learned that Hillary Kind, featured on this year's Stand Up 2 Cancer telethon, the girl with the bucket list including sky diving and meeting Dave Matthews, recently lost her battle with melanoma. She had outlived expectations given to her early on in her diagnosis, but still left this world far too young, too soon.
There are many days - most days - when I put on my happy face to those outside of my house, even though I do not feel the happiness inside. I have to. I have to do it for my own sanity as well as that of those I love. I cannot be constantly scared, depressed, disengaged. But the truth of the matter is a lot of the time I am scared, depressed, disengaged. I am not even 6 months into my battle and I have no idea how long it will last. I have no idea how long this treatment will work before I need a new one. And what scares me the most is that they don't even know what I have. They don't know how best to treat me. It's all trial and error with me, with an unknown primary. Luckily my first treatment plan seems to be working. Platinum based therapies take their toll, though. I won't be able to be on it much longer. I have a limited time right now to try and kick this thing into remission. That scares the hell out of me. The 5-year survival rate on cancer of an unknown primary is not good. Not much better for gastric cancer, which I know the doctors are leaning toward as the ultimate diagnosis for treatment options. Left alone for days at a time, you start to think about your own mortality. Most of those around me are not really ready to have those conversations. So I put on a happy face and talk about the future. What I'll do when I get back to work. Of all the places I'm excited to take Katherine when she's old enough. When I'm able to finish my Master's degree. Things that all take time.
I know that I have a limited time here on earth, be it 5 years, 10 years or 20 years - and I have no idea how to spend it. I don't have the luxury of realistically thinking I will make retirement age 25 years from now. Don't get me wrong, I don't intend to give up. I still have hope and I still have fight, but I am also not going put things aside for 25 years from now at the expense of living for today. I don't have that luxury anymore. But when I think about what I want to do, what's on my bucket list, my mind is blank. I have no bucket list. I'd like to see my daughter grow up, become and adult, get married if she chooses. I want to see her turn into the person I already get glimpses of, and see what remarkable things she will do in her time. That's not really an item you put on a bucket list. But I don't have things like "go skydiving" or "get a tattoo." I'd like to travel, but there is no one place I'd make it a goal to visit. Perhaps the Grand Canyon. I don't know. That seems trivial. The fact of the matter is most of the things I wanted to do during my life seem rather trivial now. It's not about things anymore. It's about time. Time I can't count on and time I can't wait for. People say to me, "You need to live your life. Don't let treatment stop you from doing that." How do you do that when you spend so much of a 3 week treatment cycle sick? How do you do that when you don't have the means or the method? How do you do that when you don't have a clue of what you want to do? Even before I was sick, I had no idea what I wanted to be when I grew up. I was constantly going back to school, learning new things, trying new fields. I thought I had found the perfect mix of my education and my work background, but looking at it now, I think - is this what I really want to do with the rest of my life? Is this my life's work? Or is it just a means to a financial end? Don't get me wrong. I'm not looking for a handout, or a new job, or even suggestions. These are questions in the air. Things that go around in my head when I'm alone. Things Sean is probably tired of hearing me say. Things I need to sort out for myself. No one else. Just me.
Many people I know send me prayers and, while I greatly appreciate any and all prayers given to me or said on my behalf, I'm not one to pray. I'm not religious. I have my own spirituality. I know that sounds trite, but for me it's the truth. I don't go to church, I don't pray - to be honest, I feel stupid praying. I don't discuss religion or spirituality with anyone other than as a subject of debate. I keep my faith private and I will continue to do so. I believe people need to find their own path. I'm still struggling with mine. On one hand, I have faith that good thoughts and prayers do work wonders on the body and in the universe. On the other hand, I don't believe for a second my God would have put this on me or anyone else. When people say God has a plan or God works in mysterious ways or everything for a reason, I want to punch them in the face. No offense. What plan allows a 4 year old girl to lose her mother? Why would God be so cruel? I refuse to believe that is the case. My God is not that cruel. My God knows I know this is not His plan, and He knows I know He cannot heal me (if that was the case, there would be no cancer, because God - like cancer - does not discriminate), and He knows the saying "That which does not kill us makes us stronger" is ridiculous at this point and should be banned from all cancer patients' listening range. But He also knows I know this is something that will reveal itself to me at some point, my purpose, my meaning, my life's work, when I'm ready. My job, in the meantime, is finding peace with what is going on with me, with the possibilities of the future, with the reality of how my daughter will grow up - whether I'm here for that or not. It has all changed and that is something I cannot change. There are so many possibilities, both good and bad, and all so overwhelming, and it is a big charge finding peace in all that I've been dealt.
I'm still working on it. But I will find it.
xo,
Lisa
I posted the link to Suleika Jaouad's latest blog on my Facebook page. Here it is for those who do not have (or choose not to have) Facebook access. She has been someone I've turned to over the length of my treatment for solace. She writes the words that often roll around in my head, and it brings me comfort to know she is out there, as are so many others, fighting the fight no one should. Shortly after reading it, I learned that Hillary Kind, featured on this year's Stand Up 2 Cancer telethon, the girl with the bucket list including sky diving and meeting Dave Matthews, recently lost her battle with melanoma. She had outlived expectations given to her early on in her diagnosis, but still left this world far too young, too soon.
There are many days - most days - when I put on my happy face to those outside of my house, even though I do not feel the happiness inside. I have to. I have to do it for my own sanity as well as that of those I love. I cannot be constantly scared, depressed, disengaged. But the truth of the matter is a lot of the time I am scared, depressed, disengaged. I am not even 6 months into my battle and I have no idea how long it will last. I have no idea how long this treatment will work before I need a new one. And what scares me the most is that they don't even know what I have. They don't know how best to treat me. It's all trial and error with me, with an unknown primary. Luckily my first treatment plan seems to be working. Platinum based therapies take their toll, though. I won't be able to be on it much longer. I have a limited time right now to try and kick this thing into remission. That scares the hell out of me. The 5-year survival rate on cancer of an unknown primary is not good. Not much better for gastric cancer, which I know the doctors are leaning toward as the ultimate diagnosis for treatment options. Left alone for days at a time, you start to think about your own mortality. Most of those around me are not really ready to have those conversations. So I put on a happy face and talk about the future. What I'll do when I get back to work. Of all the places I'm excited to take Katherine when she's old enough. When I'm able to finish my Master's degree. Things that all take time.
I know that I have a limited time here on earth, be it 5 years, 10 years or 20 years - and I have no idea how to spend it. I don't have the luxury of realistically thinking I will make retirement age 25 years from now. Don't get me wrong, I don't intend to give up. I still have hope and I still have fight, but I am also not going put things aside for 25 years from now at the expense of living for today. I don't have that luxury anymore. But when I think about what I want to do, what's on my bucket list, my mind is blank. I have no bucket list. I'd like to see my daughter grow up, become and adult, get married if she chooses. I want to see her turn into the person I already get glimpses of, and see what remarkable things she will do in her time. That's not really an item you put on a bucket list. But I don't have things like "go skydiving" or "get a tattoo." I'd like to travel, but there is no one place I'd make it a goal to visit. Perhaps the Grand Canyon. I don't know. That seems trivial. The fact of the matter is most of the things I wanted to do during my life seem rather trivial now. It's not about things anymore. It's about time. Time I can't count on and time I can't wait for. People say to me, "You need to live your life. Don't let treatment stop you from doing that." How do you do that when you spend so much of a 3 week treatment cycle sick? How do you do that when you don't have the means or the method? How do you do that when you don't have a clue of what you want to do? Even before I was sick, I had no idea what I wanted to be when I grew up. I was constantly going back to school, learning new things, trying new fields. I thought I had found the perfect mix of my education and my work background, but looking at it now, I think - is this what I really want to do with the rest of my life? Is this my life's work? Or is it just a means to a financial end? Don't get me wrong. I'm not looking for a handout, or a new job, or even suggestions. These are questions in the air. Things that go around in my head when I'm alone. Things Sean is probably tired of hearing me say. Things I need to sort out for myself. No one else. Just me.
Many people I know send me prayers and, while I greatly appreciate any and all prayers given to me or said on my behalf, I'm not one to pray. I'm not religious. I have my own spirituality. I know that sounds trite, but for me it's the truth. I don't go to church, I don't pray - to be honest, I feel stupid praying. I don't discuss religion or spirituality with anyone other than as a subject of debate. I keep my faith private and I will continue to do so. I believe people need to find their own path. I'm still struggling with mine. On one hand, I have faith that good thoughts and prayers do work wonders on the body and in the universe. On the other hand, I don't believe for a second my God would have put this on me or anyone else. When people say God has a plan or God works in mysterious ways or everything for a reason, I want to punch them in the face. No offense. What plan allows a 4 year old girl to lose her mother? Why would God be so cruel? I refuse to believe that is the case. My God is not that cruel. My God knows I know this is not His plan, and He knows I know He cannot heal me (if that was the case, there would be no cancer, because God - like cancer - does not discriminate), and He knows the saying "That which does not kill us makes us stronger" is ridiculous at this point and should be banned from all cancer patients' listening range. But He also knows I know this is something that will reveal itself to me at some point, my purpose, my meaning, my life's work, when I'm ready. My job, in the meantime, is finding peace with what is going on with me, with the possibilities of the future, with the reality of how my daughter will grow up - whether I'm here for that or not. It has all changed and that is something I cannot change. There are so many possibilities, both good and bad, and all so overwhelming, and it is a big charge finding peace in all that I've been dealt.
I'm still working on it. But I will find it.
xo,
Lisa
Sunday, November 4, 2012
Edema is a b*tch
I realize it's been a while since I've posted. I've had a nice, 4-week treatment cycle this time. Good thing, too, as my treatment would have normally fallen on the day Sandy made her appearance on the East coast. I go in for treatment #2 of this round tomorrow. My body is starting to really wear down. I have edema in my right leg that has progressively gotten worse over the weeks. My doc thinks there may be scar tissue in my groin from when the node was taken out for the biopsy in June. Combine that with already enlarged and malfunctioning nodes from the cancer, and the lymph nodes in my groin are just not functioning well enough to get rid of the fluid in my leg. It's a b*tch. My hip to my toes are swollen. My left thigh is two inches smaller than my right. I have a compression sock from CVS, but it only goes to my knee and the issue is higher than that, so I really need one custom fitted. Doc put me in for physical therapy so I should be getting a call early this week to set up an appointment. They are certified in Manual Lymph Drainage, which is a specific type of treatment consisting of massage, compression garments, and specific exercises. I'm hoping the damage isn't permanent and breaking up the scar tissue combined with the massage and compression garments will help reverse the swelling. Lymphedema doesn't react the same as swelling from other issues, like muscle damage or infection. You can't ice it or heat it. You actually can do more harm than good by doing so. Water pills and diuretics don't work, as the issue is within the lymphatic system, and not an excess of bodily fluid. Just have to get those lymph nodes to work properly again and we're in business.
The change to carboplatin from cisplatin definitely made a difference. I wasn't nearly as nauseous this time. I was much more tired and my taste didn't come back until end of week 3, which is late, but my doc agreed the fatigue and extension of loss of taste is probably due to the length of overall treatment rather than the carboplatin itself. The longer you're in chemo, the more it affects you. I look forward to my first break, whenever we decide that is.
I made a comment on Facebook a little while ago about understanding how people go into bankruptcy from medical bills. Understand that I don't usually talk to people about my own finances, but that comment wasn't about me. I stand by that statement. However, I am more and more appreciative of the insurance I have. I haven't paid a dime toward chemo yet - insurance has covered it 100% - and the majority of my bills are copays. I've had a couple hundred dollar bills from my early procedures and surgery, but overall, my medical bills from diagnosing my Celiac disease last year were more expensive than this year. I do see, though, how much the overall bills are, and I realize how easily people can get crushed underneath of them. My insurance covers 90% of my medical expenses. I know people who have a 70/30 plan, and my work has a high deductible plan which, if I was on it, would require me to pay $5000 in deductibles for a family before getting coverage. That's absurd. That's how I understand how lucky I am and how others are not as lucky. In addition, I'm on LTD now, which is 60% of my pay. This requires a stiff tightening of the belt and gives you a big kick in the pants when you wind up having to have brakes replaced on a Volvo the first week you're at a reduced salary. I've got it, but it doesn't make you feel good. I appreciate all of the offers of help. I'm ok, though. There are people out there with much more of a need for financial assistance, like those who lost everything during the hurricane. I can cover my bills. We went shopping today and got Katherine a new coat. She's still in day care full time. I'm still planning a trip to Disney next year. It just hits you hard when you go from 100% to 60% in a matter of months, that's all.
My thoughts go out to those still recovering from the hurricane. We weren't really affected here at all. No loss of power, no downed trees (not that we have any). Katherine's school reopened on Wednesday of that week. We had some damage done to the flashing on our roof, but it's minor and homeowners will cover it. My in-laws just got power last night. I know people still without it. The people in Seaside Heights and Breezy Point, those people will forever be changed. I cannot imagine. I think of them often. With everything I'm going through right now I have my house, I have my family, I have my beautiful daughter. I am lucky. Maybe not in health, but that will change too if I have anything to say about it.
In closing, as I mentioned previouisly, I'm much more tired as treatment goes along, so if I don't get in touch or get back to you, I apologize. I like to try to squeeze in as much contact as I can on my good weeks, but it's just not always possible. I know many of you want to come visit and that would be great, but I'm not really up for much when I'm not feeling well. Those who know me know I won't sit still if I have a visitor, so it's best just to wait until I'm feeling better. I'll get everyone in at some point, I promise. I ask that you please just be patient (and forgiving!).
Take care all.
xo,
Lisa
The change to carboplatin from cisplatin definitely made a difference. I wasn't nearly as nauseous this time. I was much more tired and my taste didn't come back until end of week 3, which is late, but my doc agreed the fatigue and extension of loss of taste is probably due to the length of overall treatment rather than the carboplatin itself. The longer you're in chemo, the more it affects you. I look forward to my first break, whenever we decide that is.
I made a comment on Facebook a little while ago about understanding how people go into bankruptcy from medical bills. Understand that I don't usually talk to people about my own finances, but that comment wasn't about me. I stand by that statement. However, I am more and more appreciative of the insurance I have. I haven't paid a dime toward chemo yet - insurance has covered it 100% - and the majority of my bills are copays. I've had a couple hundred dollar bills from my early procedures and surgery, but overall, my medical bills from diagnosing my Celiac disease last year were more expensive than this year. I do see, though, how much the overall bills are, and I realize how easily people can get crushed underneath of them. My insurance covers 90% of my medical expenses. I know people who have a 70/30 plan, and my work has a high deductible plan which, if I was on it, would require me to pay $5000 in deductibles for a family before getting coverage. That's absurd. That's how I understand how lucky I am and how others are not as lucky. In addition, I'm on LTD now, which is 60% of my pay. This requires a stiff tightening of the belt and gives you a big kick in the pants when you wind up having to have brakes replaced on a Volvo the first week you're at a reduced salary. I've got it, but it doesn't make you feel good. I appreciate all of the offers of help. I'm ok, though. There are people out there with much more of a need for financial assistance, like those who lost everything during the hurricane. I can cover my bills. We went shopping today and got Katherine a new coat. She's still in day care full time. I'm still planning a trip to Disney next year. It just hits you hard when you go from 100% to 60% in a matter of months, that's all.
My thoughts go out to those still recovering from the hurricane. We weren't really affected here at all. No loss of power, no downed trees (not that we have any). Katherine's school reopened on Wednesday of that week. We had some damage done to the flashing on our roof, but it's minor and homeowners will cover it. My in-laws just got power last night. I know people still without it. The people in Seaside Heights and Breezy Point, those people will forever be changed. I cannot imagine. I think of them often. With everything I'm going through right now I have my house, I have my family, I have my beautiful daughter. I am lucky. Maybe not in health, but that will change too if I have anything to say about it.
In closing, as I mentioned previouisly, I'm much more tired as treatment goes along, so if I don't get in touch or get back to you, I apologize. I like to try to squeeze in as much contact as I can on my good weeks, but it's just not always possible. I know many of you want to come visit and that would be great, but I'm not really up for much when I'm not feeling well. Those who know me know I won't sit still if I have a visitor, so it's best just to wait until I'm feeling better. I'll get everyone in at some point, I promise. I ask that you please just be patient (and forgiving!).
Take care all.
xo,
Lisa
Tuesday, October 16, 2012
Treatment Round #2
Well, it has been a little more than a week since the first treatment of my second round of chemo. I definitely have less nausea this time around, so the change from cisplatin to carboplatin worked for that. I'm exhausted, however, and I'm starting to realize that's not from laying in bed all day, since I was up and about more than not this time. Seems this chemo thing takes its toll on you. I get out of breath and out of energy just walking to the kitchen or the bathroom. Taking a bath is exhausting. I know this will get better each day, but it sucks not being able to go out even when I feel better. I need to give myself a break, I know. I'm just so bored. The mouth sores are still here and I get them in my throat rather than my mouth, so it's really lovely to swallow. I'm working on day 5 of them. Last time they lasted a week. Prior to that it was about 3 days. I'm not happy with the way that's progressing. I have been trying to eat through everything, however yesterday was not a good day for food. Everything upset my stomach and pretty much went right through me. I'll try again today. Last night when I went to bed my stomach was literally screaming at me in hunger. I was kinda scared. Really. But I knew eating something would just send me to the bathroom again and decided to ignore it. I mean, my stomach may have been what put me in this place to begin with, so it can just pipe down a bit!
I have a 4 week schedule this time, which gives me an extra week of recovery, which is awesome. I didn't want to be going through treatment the week of Halloween, and this also bumps everything back so I'm good for Thanksgiving. I'm trying to fit in as much as I can in that time that I haven't been able to do, but I don't want to over do it. Long term disability is about to kick in as well, so I really have to watch the funds. When you're bored all day, it's amazing how much money you can spend. Gotta nip that one!
So this will probably be it until the next session. Have a fantastic Halloween all! Enjoy the Fall weather, wherever you are!
xo,
Lisa
I have a 4 week schedule this time, which gives me an extra week of recovery, which is awesome. I didn't want to be going through treatment the week of Halloween, and this also bumps everything back so I'm good for Thanksgiving. I'm trying to fit in as much as I can in that time that I haven't been able to do, but I don't want to over do it. Long term disability is about to kick in as well, so I really have to watch the funds. When you're bored all day, it's amazing how much money you can spend. Gotta nip that one!
So this will probably be it until the next session. Have a fantastic Halloween all! Enjoy the Fall weather, wherever you are!
xo,
Lisa
Saturday, October 6, 2012
Woohoo!!!!!
So, as many of you know, my first CT scan since starting chemo was yesterday and news came back better than I expected! I will put the clinical findings here, since they sound so AWESOME.
"Previously prominent retroperitoneal lymph nodes have diminished in size and now appear normal. Previously enlarged mesenteric lymph nodes have also diminished in size.... Haziness of the mesenteric root has also improved and pelvic ascites has almost completely resolved. Right inguinal lymph nodes have decreased in size. The uterus and left ovary have diminished in size, likely physiologic."
Woo-freaking-hoooooooooo!!!!!! I was hoping things were stable, but to be told they had reduced in size and some have gone back to normal - beyond my imagination!!! There are a couple of notes on the scan - specifically what they call a ground glass opacity in the lower lobe of my right lung - which need to be noted, but that was even stable since the last time and the report says it could be inflammatory, so it just needs to be noted and watched. Overall, fantastic news that even my doc was excited about! She even double checked with the radiologist because she wanted to be sure she was actually seeing what she thought she was seeing. hahahahahaha! Totally worth the hour and a half wait for that news, let me tell you!
The results of the molecular profiling (genetic testing) came back inconclusive. Surprise. I mean, it's me. Why would I be in the majority of patients who get results? Anyway, what the report did show were treatments that my type of cancer would most likely respond to, and the top drugs are drugs I'm currently on, so that just reiterated the treatment is the right one. You know, aside from the fact that it's working and all. The report also gave some other drugs that are likely to have benefit once this treatment plan has run its course, which they all do. I'm currently on Cisplatin, a platinum based therapy, and that drug can only be used for so long before it starts to turn on you. It's a powerful, powerful drug. So down the line, as my doc said, we have more options she wouldn't have necessarily thought of.
Now, the interesting thing about the drugs they recommended is the range of cancers they are intended to treat. For example, one of the drugs is eriotinib, which is used to treat non-small cell lung cancer. Now lung cancer is one of the two most likely cancers when CUP (cancer of unknown primary) is the diagnosis, so that was interesting. But there was also Cetuximab, which is used for colon cancer, and temozolomide, which is used for brain cancer. The current treatment I'm on is for GI cancers, but also for ovarian, cervical, and some breast cancers. Now I know sometimes they find the drugs work for more than intended, but I thought the range was odd. There was no drug recommended for pancreatic cancer, and since the treatment I'm on seems to be working, I've officially dismissed that as an option, even if my doctor's officially can't. Pancreatic cancer doesn't react to the drugs I'm on, so that's a HUUUUUGEE weight off my shoulders!!!! I can't even tell you, for real.
So on to a more immediate need - my current treatment. Since I've been so sick for so long after the infusion, my doc is switching Cisplatin to Carboplatin. They are both platinum based therapies, but Carboplatin apparently has fewer, as the PA said, "pukey" side effects. lol. I told them I would suffer through since it's working, but Dr. Dotan seemed confident the switch won't effect the results as they are the same type of drug. I sure hope not. The plan is now for three more treatments and then another CT. If the results of the next CT are good, we're going to take a break from treatment for a while. I don't know what a while is, but since that break will fall in December, I'm all for it! To be free of treatment and all of its awful side effects over the holidays would be heaven. Woooooo-freakin-hoooooo!!!!!!!!! So good thoughts out for that goal!
Ok, time to go enjoy the weekend! We're going pumpkin picking today before the rain comes in. Since I'll be in treatment mode for the next two weeks, I wanted to get the pumpkins now before the good ones are gone. Have a good one everyone!
xo,
Lisa
"Previously prominent retroperitoneal lymph nodes have diminished in size and now appear normal. Previously enlarged mesenteric lymph nodes have also diminished in size.... Haziness of the mesenteric root has also improved and pelvic ascites has almost completely resolved. Right inguinal lymph nodes have decreased in size. The uterus and left ovary have diminished in size, likely physiologic."
Woo-freaking-hoooooooooo!!!!!! I was hoping things were stable, but to be told they had reduced in size and some have gone back to normal - beyond my imagination!!! There are a couple of notes on the scan - specifically what they call a ground glass opacity in the lower lobe of my right lung - which need to be noted, but that was even stable since the last time and the report says it could be inflammatory, so it just needs to be noted and watched. Overall, fantastic news that even my doc was excited about! She even double checked with the radiologist because she wanted to be sure she was actually seeing what she thought she was seeing. hahahahahaha! Totally worth the hour and a half wait for that news, let me tell you!
The results of the molecular profiling (genetic testing) came back inconclusive. Surprise. I mean, it's me. Why would I be in the majority of patients who get results? Anyway, what the report did show were treatments that my type of cancer would most likely respond to, and the top drugs are drugs I'm currently on, so that just reiterated the treatment is the right one. You know, aside from the fact that it's working and all. The report also gave some other drugs that are likely to have benefit once this treatment plan has run its course, which they all do. I'm currently on Cisplatin, a platinum based therapy, and that drug can only be used for so long before it starts to turn on you. It's a powerful, powerful drug. So down the line, as my doc said, we have more options she wouldn't have necessarily thought of.
Now, the interesting thing about the drugs they recommended is the range of cancers they are intended to treat. For example, one of the drugs is eriotinib, which is used to treat non-small cell lung cancer. Now lung cancer is one of the two most likely cancers when CUP (cancer of unknown primary) is the diagnosis, so that was interesting. But there was also Cetuximab, which is used for colon cancer, and temozolomide, which is used for brain cancer. The current treatment I'm on is for GI cancers, but also for ovarian, cervical, and some breast cancers. Now I know sometimes they find the drugs work for more than intended, but I thought the range was odd. There was no drug recommended for pancreatic cancer, and since the treatment I'm on seems to be working, I've officially dismissed that as an option, even if my doctor's officially can't. Pancreatic cancer doesn't react to the drugs I'm on, so that's a HUUUUUGEE weight off my shoulders!!!! I can't even tell you, for real.
So on to a more immediate need - my current treatment. Since I've been so sick for so long after the infusion, my doc is switching Cisplatin to Carboplatin. They are both platinum based therapies, but Carboplatin apparently has fewer, as the PA said, "pukey" side effects. lol. I told them I would suffer through since it's working, but Dr. Dotan seemed confident the switch won't effect the results as they are the same type of drug. I sure hope not. The plan is now for three more treatments and then another CT. If the results of the next CT are good, we're going to take a break from treatment for a while. I don't know what a while is, but since that break will fall in December, I'm all for it! To be free of treatment and all of its awful side effects over the holidays would be heaven. Woooooo-freakin-hoooooo!!!!!!!!! So good thoughts out for that goal!
Ok, time to go enjoy the weekend! We're going pumpkin picking today before the rain comes in. Since I'll be in treatment mode for the next two weeks, I wanted to get the pumpkins now before the good ones are gone. Have a good one everyone!
xo,
Lisa
Monday, September 24, 2012
Wrapping up round 1
Well my first "round" of chemo is now winding down and the side effects haven't waned much at all. The nausea patch I was given this time seemed to help during week 1, but the worst of my side effects happen going into week 2, so I'm going to need to talk to my doc about the timing of that one. My nausea is starting to fade, only lingering due to mouth sores that make me gag when I swallow. They'll be gone in another day or two and I can get back to regaining the weight I've lost this time. Kat and I will have a girls day this week and next for sure, as I try and make up lost time with her. The guilt is overwhelming, even though I'm doing what I have to do to be a good mom for her. My CT scan is scheduled for October 5, and hopefully that brings good news - or no news at the very least. It will be very hard to hear the cancer has spread and knowing they still have no idea where it originated and aren't sure how to treat it.
Today is a very weak day and I find myself drifting off with "chemo brain" as I type this, so I'm going to sign off for now. Big weekend coming up. LOTS of birthdays being celebrated in the Delaney/Cochran clan! I need to get back my strength.
On a side note, I was given the ok to have alcohol moderately. Yay! Not that I'm a huge drinker, but even my doctor said a drink now and then will be good for me. Especially when I'm having dinner with the girls and want to enjoy a nice glass of wine. It's the little things these days.
xo,
Lisa
Today is a very weak day and I find myself drifting off with "chemo brain" as I type this, so I'm going to sign off for now. Big weekend coming up. LOTS of birthdays being celebrated in the Delaney/Cochran clan! I need to get back my strength.
On a side note, I was given the ok to have alcohol moderately. Yay! Not that I'm a huge drinker, but even my doctor said a drink now and then will be good for me. Especially when I'm having dinner with the girls and want to enjoy a nice glass of wine. It's the little things these days.
xo,
Lisa
Thursday, September 13, 2012
Preparing for #3
Well my good week has come and gone this cycle with nothing remarkable to note, except the edema in my leg is starting to come back. Just in time for round #3! This will be the last round before my next scan to assess how the treatment thus far has worked. I don't know if saying I'm looking forward to the scan is the right way to put it, but I am anxious to get it so I know how the chemo has worked and how aggressive the cancer is. I have a routine visit and blood work tomorrow before my next infusion on Monday. There is a possibility the results of the genetic testing may be in by now, so I'm half expecting to get those results tomorrow as well. That makes me anxious. I want to know what the cancer is, but I don't want to hear the worst possible scenario - pancreatic cancer - and that's still one of the possibilities. Gastric cancer makes the most sense with my history of Celiac disease, of course, but when they tell you they think it's upper GI in nature, pancreatic is always in your mind. Not that gastric cancer is that much better, but it's still better. I keep hoping they'll come back and say, "We were COMPLETELY wrong! It's lymphoma!" But I know that's about a .00005% chance. Ok, maybe a little higher than that, but still slim. It's funny how you hope for certain cancers, even though there is no cure. Lymphoma means it's where it should be and we can knock it into remission with a proven treatment plan, but it's still not a pretty cancer. It's still a battle. I guess it would be a battle I could prepare myself for, though, with a known schedule and known expectations.
From what I've read, around the third or fourth infusion, most people hit a low point, becoming exhausted both physically and mentally. I'm glad I read it because, coming up on my third infusion, I can prepare for it. It's like the baby blues. You have no control over yourself, but at least you know why, and that makes it tolerable. I hear it gets better after that, though. I'm counting on it. Right now, more than anything, I need a plan. I need to be able to get into a routine of living, not of being sick. I know I have a long road ahead of me, but I also know I can't spend the rest of my life with two weeks down and one week up. And good LORD I'm bored! At this rate I'll spend all of the money I have saved up going out to lunch and shopping, and I'll be stuck in the house forever! I need to do something. If I can't go back to work, I need to find a hobby. So let's hope this infusion and scan bring a sense of where we are and what we're up against so I can plan my future. At least my immediate future.
The one thing about the 3 week treatment rotation, as opposed to the 4 weeks I got with my first infusion, is that my taste buds don't have a chance to recover before the next infusion, so suddenly I find myself on a mostly raw foods diet. Cold, raw foods are about the only things that consistently taste good. Rather convenient how healthy this diet is, so I suppose worse things could happen! When I was pregnant with Katherine, my diet consisted of fruit smoothies and anything beige in color, so this is probably much better. Having said that, if anyone has a recipe for awesome raw foods (mainly types of salads, I guess), I'd love to hear them. Keep in mind I despise tomatoes (and that is not too strong of a word). Tonight I'm making a nicoise salad for dinner. I have tuna to sear and yummy potatoes and green beans to steam. Yesterday I had a Mediterranean salad, while Sean and Katherine had spaghetti. Family dinner takes on a whole new meaning when you are limited in what you can eat.
On a final note, I hope you all watched the Stand Up 2 Cancer telethon and donated what you could. I know you could (and still can!) text $10 to them, and every little bit helps. Thank you to everyone who participated. Even awareness brings about change, so thank you. To date, the telethon raised over $81 million and officially partnered with St. Baldrick's to form the Pediatric Dream team, so that's great news! The more news like this, the better! Today I received my SU2C "In the Fight" tshirt and Dorje necklace in the mail that I bought. The necklace is the Tibetan symbol for Diamond Lightening, or Indestructible. It was created by a cancer survivor as a symbol of what cancer CAN'T do. I can feel its power already.
Ok, I'll be back next week some time to update you all on how the infusion goes. Thank you again to everyone who has reached out (and those who read quietly!) for all of your support. I honestly feel like I have an army of friends and family standing behind me now, lifting me up when I need help, fighting along with me. It's very moving, very inspirational, and I love you all for it.
xo,
Lisa
From what I've read, around the third or fourth infusion, most people hit a low point, becoming exhausted both physically and mentally. I'm glad I read it because, coming up on my third infusion, I can prepare for it. It's like the baby blues. You have no control over yourself, but at least you know why, and that makes it tolerable. I hear it gets better after that, though. I'm counting on it. Right now, more than anything, I need a plan. I need to be able to get into a routine of living, not of being sick. I know I have a long road ahead of me, but I also know I can't spend the rest of my life with two weeks down and one week up. And good LORD I'm bored! At this rate I'll spend all of the money I have saved up going out to lunch and shopping, and I'll be stuck in the house forever! I need to do something. If I can't go back to work, I need to find a hobby. So let's hope this infusion and scan bring a sense of where we are and what we're up against so I can plan my future. At least my immediate future.
The one thing about the 3 week treatment rotation, as opposed to the 4 weeks I got with my first infusion, is that my taste buds don't have a chance to recover before the next infusion, so suddenly I find myself on a mostly raw foods diet. Cold, raw foods are about the only things that consistently taste good. Rather convenient how healthy this diet is, so I suppose worse things could happen! When I was pregnant with Katherine, my diet consisted of fruit smoothies and anything beige in color, so this is probably much better. Having said that, if anyone has a recipe for awesome raw foods (mainly types of salads, I guess), I'd love to hear them. Keep in mind I despise tomatoes (and that is not too strong of a word). Tonight I'm making a nicoise salad for dinner. I have tuna to sear and yummy potatoes and green beans to steam. Yesterday I had a Mediterranean salad, while Sean and Katherine had spaghetti. Family dinner takes on a whole new meaning when you are limited in what you can eat.
On a final note, I hope you all watched the Stand Up 2 Cancer telethon and donated what you could. I know you could (and still can!) text $10 to them, and every little bit helps. Thank you to everyone who participated. Even awareness brings about change, so thank you. To date, the telethon raised over $81 million and officially partnered with St. Baldrick's to form the Pediatric Dream team, so that's great news! The more news like this, the better! Today I received my SU2C "In the Fight" tshirt and Dorje necklace in the mail that I bought. The necklace is the Tibetan symbol for Diamond Lightening, or Indestructible. It was created by a cancer survivor as a symbol of what cancer CAN'T do. I can feel its power already.
Ok, I'll be back next week some time to update you all on how the infusion goes. Thank you again to everyone who has reached out (and those who read quietly!) for all of your support. I honestly feel like I have an army of friends and family standing behind me now, lifting me up when I need help, fighting along with me. It's very moving, very inspirational, and I love you all for it.
xo,
Lisa
Thursday, September 6, 2012
Let's try this again
Well, round two sucked almost as much as round one. Clearly the additional meds they gave me and the reduction of the chemo didn't have the desired effect. The nausea hit hard on Thursday night of my first week and extended through, well, now. Today is the first day, however, that I have any energy at all and I even made myself a (bad) plate of dippy eggs this morning. And ate them. That's impressive. I was supposed to call my doc Monday morning if I wasn't feeling any better, but I didn't. I know, I know, blah, blah, blah, but the last thing you want to do when you're teetering on the edge of vomiting is get on the phone to tell your doc and then have her order you to the center for more fluids. Especially since the IV was taken out Friday and I would've been stabbed in my port again. Which hurts. No thanks. Plus that hour car ride with nausea is brutal. Can PA PLEASE do something about it's horrendous roads????? I realized a few things this time, though. 1 - Diarrhea added to nausea is not good. 2 - Mouth sores make you more nauseous when you swallow. 3 - The extreme back pain I got in round one was not a coincidence. I'm going to have to nip that one in the bud. It came at the same time each treatment and lasts for about 2 days. It's like a vice on my back when I make any single movement and I have to sort of hold my breath and ease into any position. Very few are comfortable. Seeing as I tried not to stay in bed all day this time and actually made it to the couch more often, I think the pain is from one of two things: either my bed (I switched positions after the last time so I now sleep head to foot in the bed, and the night before I got the pain I switched back for some dumb reason. Plus it's a TempurPedic, which really pisses me off cause it shouldn't matter. I hate that bed.) or the Neulasta shot I get for increased white blood cells. The shot is only supposed to affect bones, really, and give you a flu like feeling (which I assure you this is not), but next time I'm going to try to take Tylenol a few days after the shot and see if it helps. I just hate adding drugs on drugs. I take so many as it is, I feel like they're going to start to work against each other and themselves at some point.
Today is recovery day. I'm on the computer, eating as much as I can to make up for lost time, catching up on the non-existent summer shows (oooh! I just realized I have a SYTYCD to watch! Yay!), etc. I'm usually beat by 7PM, which stinks because Kat is WOUND UP at that time and I don't get to spend much quality time with her anymore as it is. It's just too much some days. I'd take a nap but, well, I don't really like to nap. Especially after having been in bed for a week with not much of a choice.
OK, enough for today. Before I go I have a couple of notes I want to make. Please make sure you watch the Stand Up 2 Cancer fundraiser THIS FRIDAY, September 7, on all major networks and give what you can.
Also, I found this fantastic site that sends one free head scarf for anyone losing hair for any medical reason and I wanted to share. Anyone that does something that good should be promoted. Go to Good Wishes Scarves to check them out.
xo- Lisa
Today is recovery day. I'm on the computer, eating as much as I can to make up for lost time, catching up on the non-existent summer shows (oooh! I just realized I have a SYTYCD to watch! Yay!), etc. I'm usually beat by 7PM, which stinks because Kat is WOUND UP at that time and I don't get to spend much quality time with her anymore as it is. It's just too much some days. I'd take a nap but, well, I don't really like to nap. Especially after having been in bed for a week with not much of a choice.
OK, enough for today. Before I go I have a couple of notes I want to make. Please make sure you watch the Stand Up 2 Cancer fundraiser THIS FRIDAY, September 7, on all major networks and give what you can.
Also, I found this fantastic site that sends one free head scarf for anyone losing hair for any medical reason and I wanted to share. Anyone that does something that good should be promoted. Go to Good Wishes Scarves to check them out.
xo- Lisa
Tuesday, August 28, 2012
2nd Treatment
My second treatment was yesterday, August 27, coninciding with Katherine's 4th birthday. The only up side to this is that day one is usually ok as far as how I feel. Aside from having the 5-FU pump attached to me, nothing was out of the ordinary. She was overwhelmed with her birthday weekend - family party on Saturday, lunch and shopping for new shoes Sunday, cupcakes to school and then presents from Mommy and Daddy on Monday - her schedule is out of whack because she's so exhausted by bed time, she has a hard time getting settled. But this week back at school should help her get back on schedule. She also, for the first time, expressed worry about me and the medicine I'm getting. She told Sean Sunday night in bed that she was worried about me because I had to get more medicine and thought she wouldn't see me at all for her birthday. She came downstairs and I assured her I would be here when she got home. She asked for me when she woke up, and Sean reiterated I would be there when she got home. And when she walked into the house and saw a princess tent waiting for her, she was back to her old self. No worries at all. I even joined her in her tent for a while (as Belle - Kat was Rapunzel and Sean was Eugene, of course. Daddy is always the Prince.).
As you can see, I'm in scarf/hat/wig mode now. The hair is mostly gone. I went in last Tuesday and got my head shaved to 1/2 an inch and it's fallen out much more since then. Oddly, I still have the hair on my arms and legs. Eyebrows and eyelashes are still there but I don't know for how much longer. Some lost them all, some just have thinning. I don't know which I'll have. Only time will tell.
So second treatment started yesterday. The day went well. As I said, I don't get many side effects on day one. Today I woke up with some nausea and quickly took my meds for the morning. My docs agreed that the extensive nausea last time was not normal and needed to be addressed. They lowered my chemo dose by about 20% (I was assured practically no one can stay on the level the first start you, but they go from the recommended dose from the studies and then adjust from there). I will also be taking steroids in addition to the anti nausea meds starting Thursday, as they give me IV steroids with the IV chemo on Monday and that stays in my system for 3 days. On the first three days as well I take Emend, which is a tri-pack of anti-nausea meds specifically made for chemo patients. Day one works great, but even last time by day two I was sick, so I'm not sure how much it helps. I don't really want to find out, to be honest! I could be much worse than this! My goes for this round of treatment is to try to be as present as possible and not be in bed all the time. We'll see how well that works. I find that sometimes being in bed away from Katherine allows her to play more and not think about Mommy being sick, whereas laying on the couch and not being able to do anything keeps it in her mind and makes her worry more. Nausea usually takes charge, however, so we'll see how much control I can have over this decision.
I've called Penn to set up a time to come in for a second opinion. I'm waiting for a nurse navigator to call me back (which should have happened by now, but I've been too busy to care that it hasn't) and set up an appointment. When I told my doctor, Dr. Dotan, she was excited. A former colleague of hers, Dr. Roger Cohen, works at Penn and specializes in cancers of an unknown primary, as well as head and neck, and lung cancers. She said if anyone would know what to do, he would. She gushed. Literally. She let me know she'd send an email to him letting him know I'm setting up an appointment. Because they will probably put me in with a GI doctor when they set me up, it's important to mention his name to scheduling to try and get in with him. I was happy to hear her excitement. Any time your doctor shows enthusiasm over something related to your condition, it's a good thing. She also told me she was optomistic that my treatment would work. I know she can't know that for sure, but just telling me she was optomistic lifted my spirits and I've been holding on to that for days.
I have edema in my right leg, as that is the leg with the enlarged lymph nodes, and they seem to be blocking the nodes from doing any normal work, thus causing swelling. It's gotten worse over the last week and I'm hoping this round of chemo will reduce them a bit and ease up on the edema. It's not painful, but it's very uncomfortable. Typical feeling of swelling - tightness, heaviness, etc. I'm back on the 3 week rotation with my chemo now, so since the edema started in week 4 this last time, I'm hoping it never happens again!
On a final note today, before I suck down my smoothie for breakfast in the hopes it takes away some of the nausea, I've received so many amazing cards and letters from people this past month - some from people I haven't seen in years. I even just got a post card from long-time family friends (the kind you call cousins that aren't related by blood - you know the ones), that they are running in my honor in the LiveStrong run upcoming. That's an amazing feeling when you read that. Your thoughts and outpouring of kindness has been uplifting and overwhelming, and I wanted to give you my heartfelt thanks. The support I've been given is beyond anything I would have imagined. Lifting my spirits with each receipt. And a good spirit lifting is what I need most right now, as being on disability gives you a lot of time to think, and not all of the thoughts are good, of course. So thank you all. I really appreciate the support.
Don't forget to watch the StandUp2Cancer fundraiser on all major network channels on September 7th. Any amount will help. http://www.standup2cancer.org/
xo, Lisa
As you can see, I'm in scarf/hat/wig mode now. The hair is mostly gone. I went in last Tuesday and got my head shaved to 1/2 an inch and it's fallen out much more since then. Oddly, I still have the hair on my arms and legs. Eyebrows and eyelashes are still there but I don't know for how much longer. Some lost them all, some just have thinning. I don't know which I'll have. Only time will tell.
So second treatment started yesterday. The day went well. As I said, I don't get many side effects on day one. Today I woke up with some nausea and quickly took my meds for the morning. My docs agreed that the extensive nausea last time was not normal and needed to be addressed. They lowered my chemo dose by about 20% (I was assured practically no one can stay on the level the first start you, but they go from the recommended dose from the studies and then adjust from there). I will also be taking steroids in addition to the anti nausea meds starting Thursday, as they give me IV steroids with the IV chemo on Monday and that stays in my system for 3 days. On the first three days as well I take Emend, which is a tri-pack of anti-nausea meds specifically made for chemo patients. Day one works great, but even last time by day two I was sick, so I'm not sure how much it helps. I don't really want to find out, to be honest! I could be much worse than this! My goes for this round of treatment is to try to be as present as possible and not be in bed all the time. We'll see how well that works. I find that sometimes being in bed away from Katherine allows her to play more and not think about Mommy being sick, whereas laying on the couch and not being able to do anything keeps it in her mind and makes her worry more. Nausea usually takes charge, however, so we'll see how much control I can have over this decision.
I've called Penn to set up a time to come in for a second opinion. I'm waiting for a nurse navigator to call me back (which should have happened by now, but I've been too busy to care that it hasn't) and set up an appointment. When I told my doctor, Dr. Dotan, she was excited. A former colleague of hers, Dr. Roger Cohen, works at Penn and specializes in cancers of an unknown primary, as well as head and neck, and lung cancers. She said if anyone would know what to do, he would. She gushed. Literally. She let me know she'd send an email to him letting him know I'm setting up an appointment. Because they will probably put me in with a GI doctor when they set me up, it's important to mention his name to scheduling to try and get in with him. I was happy to hear her excitement. Any time your doctor shows enthusiasm over something related to your condition, it's a good thing. She also told me she was optomistic that my treatment would work. I know she can't know that for sure, but just telling me she was optomistic lifted my spirits and I've been holding on to that for days.
I have edema in my right leg, as that is the leg with the enlarged lymph nodes, and they seem to be blocking the nodes from doing any normal work, thus causing swelling. It's gotten worse over the last week and I'm hoping this round of chemo will reduce them a bit and ease up on the edema. It's not painful, but it's very uncomfortable. Typical feeling of swelling - tightness, heaviness, etc. I'm back on the 3 week rotation with my chemo now, so since the edema started in week 4 this last time, I'm hoping it never happens again!
On a final note today, before I suck down my smoothie for breakfast in the hopes it takes away some of the nausea, I've received so many amazing cards and letters from people this past month - some from people I haven't seen in years. I even just got a post card from long-time family friends (the kind you call cousins that aren't related by blood - you know the ones), that they are running in my honor in the LiveStrong run upcoming. That's an amazing feeling when you read that. Your thoughts and outpouring of kindness has been uplifting and overwhelming, and I wanted to give you my heartfelt thanks. The support I've been given is beyond anything I would have imagined. Lifting my spirits with each receipt. And a good spirit lifting is what I need most right now, as being on disability gives you a lot of time to think, and not all of the thoughts are good, of course. So thank you all. I really appreciate the support.
Don't forget to watch the StandUp2Cancer fundraiser on all major network channels on September 7th. Any amount will help. http://www.standup2cancer.org/
xo, Lisa
Wednesday, August 15, 2012
The hair
So it appears they lied when they told me my hair should thin, but not fall out. During my shower on Monday, I was rinsing my hair and it was coming out in handfuls. Then in brushfuls, after. And ever since I can't run my hands through my hair, or even touch it, without winding up with a handful of hair. So yesterday I went out and bought a wig at a great salon in Collegeville that offers them ever since the owner's wife was diagnosed with ovarian cancer. (She has since passed away, but her legacy of helping patients feel better about how they look lives on, and that's a great, great thing.) Being that I'm not quite ready to wear the wig full time, but I couldn't continue tying what was left of my hair up, I went almost full Britney and got a pixie cut. Well, sort of. It was hard for him to cut since it was coming out in handfuls when he combed through, but he did a decent job and for a few more days I have the first super short haircut I've ever had since birth. My dad will be happy - he loves short hair. I told him he has a few days to come see it or he'll miss it! So here it is. The only picture that exists of me with super short hair.
For those wondering, I feel much better this week than last. The nausea is being kept at bay with meds, although it is still underlying, but my taste has changed and it's hard for find anything to eat that doesn't taste metallic, or acidic, or something -ic. Plus, being gluten free, my food choices are limited. Fruit is the only thing that tastes sort of normal, although dulled, so I eat tons of it, which I guess is good for my body.
Next week I will be preparing for my daughter's birthday party and subsequent birthday. She's turning 4. I don't know where the time has gone, but I think it has been condensed into her as one little ball of attitude. Although, if I have to admit it, I love that she has such spunk. She's a handful, and it gives me a glimmer of what she'll be as an adult and I love what I see.
Thank you, all of you, for the overwhelming support you've shown during this most difficult time. Your response to my first post was overwhelming, and I definitely am lifted up by your kind words and prayers. I don't know that I'll be posting again until after my next treatment, so enjoy the remainder of your summer all!
xo,
Lisa
For those wondering, I feel much better this week than last. The nausea is being kept at bay with meds, although it is still underlying, but my taste has changed and it's hard for find anything to eat that doesn't taste metallic, or acidic, or something -ic. Plus, being gluten free, my food choices are limited. Fruit is the only thing that tastes sort of normal, although dulled, so I eat tons of it, which I guess is good for my body.
Next week I will be preparing for my daughter's birthday party and subsequent birthday. She's turning 4. I don't know where the time has gone, but I think it has been condensed into her as one little ball of attitude. Although, if I have to admit it, I love that she has such spunk. She's a handful, and it gives me a glimmer of what she'll be as an adult and I love what I see.
Thank you, all of you, for the overwhelming support you've shown during this most difficult time. Your response to my first post was overwhelming, and I definitely am lifted up by your kind words and prayers. I don't know that I'll be posting again until after my next treatment, so enjoy the remainder of your summer all!
xo,
Lisa
Saturday, August 11, 2012
The start
Let me start at the beginning. Or what I think is the beginning. It's hard to tell. A few years ago, about a year after my daughter was born, I started getting migraines. I'd had migraines before, back in the early 2000s, just before I was diagnosed with hypothyroidism, so I thought these were because my thyroid meds were still off after pregnancy. The doctor gave me Imitrex to help as I got them, and things were fine. I rarely got them. Maybe once every 2-3 months. Then about a year later, they started increasing in frequency, and pretty soon, by early 2011, I was getting 2-3 a week. Unacceptable. Clearly. I went back to my doc and she suggested an MRI, just to make sure. I got the MRI and went on my merry way, not thinking anything, but then I got a call from my doc. There was a lesion on my brain, very small, but I needed to follow up. I scheduled an appointment with a neurologist who started the various (expensive) tests to try to figure out the cause. The lesion presented like MS, but I had no symptoms of MS, so it didn't add up. So blood test after blood test, scan after scan I went, and nothing. She put me on Topomax to curb the migraines, and although I lost 20 lbs. (side effect from the drug) and my family kept telling me to eat because I looked sick, I was finally feeling better. Around this time I also started with a new endocrinologist (who I credit for straightening me out more than anyone), and she started asking questions trying to discover why my meds would still be off, which they were. She finally asked if I had digestion issues. I said no. She said, "Well, I'm going to throw in a test for Celiac disease anyway. It might be preventing proper absorption of your meds." So she did. And what do you know? Positive for Celiac disease. I called the best gastroenterologist in the area specializing in the disease, yada yada yada, positive biopsy for celiac and it's confirmed. I'm officially gluten free. That was October of 2011. My next MRI showed the lesion was gone. Hurrah! By February the migraines had gone away and I was off the Topomax (and almost instantly gained back most of the lost weight). I finally felt healthy.
In March of 2012, I noticed enlarged lymph nodes in my right groin. Knowing this could be nothing - a minor infection, irritation, whatever, - I took note but figured I'd ask my gyn when I went for my annual in May if they were still there. In May they were, so I asked, and she said yup, go get them checked out. She ordered an endometrial biopsy and ultrasound on her side, both of which came back normal except for a rupturing cyst in my right ovary, which was thought to be nothing of importance. I went to my primary care and she suggested a general surgeon to do a biopsy. I had that done in June.
On Thursday, June 21, 2012, I got the phone call that would change my life. My biopsy came back positive for cancer. Now here's the thing. I knew it would at that point. Lymph nodes don't stay enlarged for 3 months for no reason. But what he told me would rock me to the core. Metastatic carcinoma. Metastatic. What? I thought he would say lymphoma. I still didn't process this was not possibly lymphoma even days later. Metastatic carcinoma, but they can't tell the origin. Possibly gyn or bladder. What? But I've had a year of nothing but doctors and tests. Do I need a recommendation for an oncologist? What? Oh, no. There is only one place to go. Fox Chase. I called and made my first appointment with Fox Chase Cancer Center for the next week, and thus began the ride.
Here's the summary. I've been officially diagnosed with cancer of an unknown primary. At Fox Chase, I've seen a gastroenterology general oncologist (now my main doc), GI surgical oncologist, urological oncologist, gynecological oncologist, and more nurses, techs, and administrative staff than I can count (they are FABULOUS by the way. Highly recommend them!). I've been poked, prodded, had an ovary removed, a D&C, a flex sigmoidoscopy, cystoscopy, upper endoscopy, CT scan, PET scan, and had lots and lots and lots of blood taken. Oh, and a port insertion. Since the end of June. It's now August 11th. Just sayin. I hurt. All of those tests produced nothing. No source. The cancer is in my lymphatic system, clearly, and the blood stream, but there is no tumor present anywhere in my body. This does not mean hop up and down, jump for joy. This means oh crap, how do we treat this? So my doctor, Dr. Dotan, presented my case to various medical boards and this is what she said. The cancer seems to have broken up from wherever the original location was and is now floating around my body. So there is no surgery and there is no radiation. Because the cancer cells aren't taking a specific shape of any one type of cancer (lymphoma looks one way, leukemia another, tumors another), it's hard to tell what kind of cancer it is. The pathology says it's most likely upper GI - pancreas, stomach, esophogus. Aside from the pancreas, which feels fine but of course has not been biopsied, everything else looks normal and has no cancer in it. My blood work is all normal. No cancer markers. Nothing. But the pathology reports still say GI. So we're going with an aggressive chemotherapy plan. Three different drugs, every three weeks, for 12 weeks. Cisplatin, Docetaxel, and 5-FU (fluorouricil). I go in on Monday for 2 bags of saline, various anti-nausea meds, and then the cisplatin and docetaxel. That lasts for about 5 hours. Then they hook me up to a pump of the (appropriately named) 5-FU and that comes home with me and slowly drips over the next 5 days. That's fun. I go back on Friday and they take out the pump. On Saturday I go back in for a shot of Neulasta, which increases my white blood cell count. I am then home for 2 weeks before I go back and do it all again.
The first day of chemo is fine. So many drugs I feel fine. It's about Tuesday night that the nausea hits. I have 4 different kinds of anti-nausea medicine at home with me and nothing seems to take it away. Or else it's doing a great job and I'd be clung to the toilet for 2 weeks without it. Instead I'm in bed, lying as still as possible so as not to stir up the nausea more, causing a dash to the bathroom. I started my first round on July 30th and, I am not lying to you, it was August 9th before I could eat anything. Hair thinning but no hair loss. A small consolation when you're in bed all the time anyway. Changes in taste - everything tastes metallic. Mouth sores. Other side effects I won't mention. I get to do this three more times before we do some more scans and see if it's working.
At this point there is no cure. The treatment is palliative. The hope is to keep it where it is. The cancer is not in any major organs and it is not in the abdominal wall, and that is very good. It may be my imagination, or wishful thinking, but I swear my lymph nodes have decreased a little in size. They are the only measure I have of any effectiveness right now and I'm glad I at least think they are going down, because it helps with the positive thinking. If we're still in good shape after this 12 week round, I do another one, although it will probably not be quite as aggressive. After a few more of them, if we're still where we are, I get to take a little break. At some point I may request a hysterectomy because my cervix and ovary showed a presence of cancer, although in the lymphatic system within them, not in the walls. Even so, I'd rather have whatever trace can be taken out to be taken out. I don't need them. We hope for long periods of stability. The goal is to be monitoring, not fighting. As long as it stays in check, I'm ok.
So many of you have been checking in with me, asking how I'm doing, asking Sean how I'm doing, asking how Sean and Katherine are doing. I'm so overwhelmed by the love and support everyone has given, and I am often brought to tears reading your texts, emails, posts, etc. I am so very lucky to have the family and friends I do. It is during hard times when you come to appreciate what you have in life. I have so much. So very much. We're ok. I promise. I have family close and they help.
But as you can imagine, two straight weeks of nausea leaves me out of pocket and after that, my life becomes about answer people. Then it becomes hard just to keep talking about it over and over and over again. That's why I decided to start this blog. I thought it a bit cheesy at first, but to hell with cheese. I need ease right now. I may go a while without posting, but when there is something new, I will update it here. I promise. Please continue to keep in touch otherwise. For the cancer news, though, this is the place. It's just easier to keep it in a pocket. It controls so much right now. I need some time without it now and then.
Also, many have offered services and would like to know any way to help. Right now I'm good, but what you can do is join the fight. Donate. Walk. Wear a bracelet. Any organization you choose. Funding for cancer research is being cut, and we don't need that. We need a cure. It's out of control. More than 1 in 3 people are affected by cancer at some stage in life. 1 in 3. Look around you. How many people do you know?
I'm off to bed for now. I need my beauty sleep.
xo,
Lisa
PS - Don't now go off and look at the statistics for cancer of an unknown primary. You'll just depress yourself. And the key is - it's unknown. Remember that. ;)
In March of 2012, I noticed enlarged lymph nodes in my right groin. Knowing this could be nothing - a minor infection, irritation, whatever, - I took note but figured I'd ask my gyn when I went for my annual in May if they were still there. In May they were, so I asked, and she said yup, go get them checked out. She ordered an endometrial biopsy and ultrasound on her side, both of which came back normal except for a rupturing cyst in my right ovary, which was thought to be nothing of importance. I went to my primary care and she suggested a general surgeon to do a biopsy. I had that done in June.
On Thursday, June 21, 2012, I got the phone call that would change my life. My biopsy came back positive for cancer. Now here's the thing. I knew it would at that point. Lymph nodes don't stay enlarged for 3 months for no reason. But what he told me would rock me to the core. Metastatic carcinoma. Metastatic. What? I thought he would say lymphoma. I still didn't process this was not possibly lymphoma even days later. Metastatic carcinoma, but they can't tell the origin. Possibly gyn or bladder. What? But I've had a year of nothing but doctors and tests. Do I need a recommendation for an oncologist? What? Oh, no. There is only one place to go. Fox Chase. I called and made my first appointment with Fox Chase Cancer Center for the next week, and thus began the ride.
Here's the summary. I've been officially diagnosed with cancer of an unknown primary. At Fox Chase, I've seen a gastroenterology general oncologist (now my main doc), GI surgical oncologist, urological oncologist, gynecological oncologist, and more nurses, techs, and administrative staff than I can count (they are FABULOUS by the way. Highly recommend them!). I've been poked, prodded, had an ovary removed, a D&C, a flex sigmoidoscopy, cystoscopy, upper endoscopy, CT scan, PET scan, and had lots and lots and lots of blood taken. Oh, and a port insertion. Since the end of June. It's now August 11th. Just sayin. I hurt. All of those tests produced nothing. No source. The cancer is in my lymphatic system, clearly, and the blood stream, but there is no tumor present anywhere in my body. This does not mean hop up and down, jump for joy. This means oh crap, how do we treat this? So my doctor, Dr. Dotan, presented my case to various medical boards and this is what she said. The cancer seems to have broken up from wherever the original location was and is now floating around my body. So there is no surgery and there is no radiation. Because the cancer cells aren't taking a specific shape of any one type of cancer (lymphoma looks one way, leukemia another, tumors another), it's hard to tell what kind of cancer it is. The pathology says it's most likely upper GI - pancreas, stomach, esophogus. Aside from the pancreas, which feels fine but of course has not been biopsied, everything else looks normal and has no cancer in it. My blood work is all normal. No cancer markers. Nothing. But the pathology reports still say GI. So we're going with an aggressive chemotherapy plan. Three different drugs, every three weeks, for 12 weeks. Cisplatin, Docetaxel, and 5-FU (fluorouricil). I go in on Monday for 2 bags of saline, various anti-nausea meds, and then the cisplatin and docetaxel. That lasts for about 5 hours. Then they hook me up to a pump of the (appropriately named) 5-FU and that comes home with me and slowly drips over the next 5 days. That's fun. I go back on Friday and they take out the pump. On Saturday I go back in for a shot of Neulasta, which increases my white blood cell count. I am then home for 2 weeks before I go back and do it all again.
The first day of chemo is fine. So many drugs I feel fine. It's about Tuesday night that the nausea hits. I have 4 different kinds of anti-nausea medicine at home with me and nothing seems to take it away. Or else it's doing a great job and I'd be clung to the toilet for 2 weeks without it. Instead I'm in bed, lying as still as possible so as not to stir up the nausea more, causing a dash to the bathroom. I started my first round on July 30th and, I am not lying to you, it was August 9th before I could eat anything. Hair thinning but no hair loss. A small consolation when you're in bed all the time anyway. Changes in taste - everything tastes metallic. Mouth sores. Other side effects I won't mention. I get to do this three more times before we do some more scans and see if it's working.
At this point there is no cure. The treatment is palliative. The hope is to keep it where it is. The cancer is not in any major organs and it is not in the abdominal wall, and that is very good. It may be my imagination, or wishful thinking, but I swear my lymph nodes have decreased a little in size. They are the only measure I have of any effectiveness right now and I'm glad I at least think they are going down, because it helps with the positive thinking. If we're still in good shape after this 12 week round, I do another one, although it will probably not be quite as aggressive. After a few more of them, if we're still where we are, I get to take a little break. At some point I may request a hysterectomy because my cervix and ovary showed a presence of cancer, although in the lymphatic system within them, not in the walls. Even so, I'd rather have whatever trace can be taken out to be taken out. I don't need them. We hope for long periods of stability. The goal is to be monitoring, not fighting. As long as it stays in check, I'm ok.
So many of you have been checking in with me, asking how I'm doing, asking Sean how I'm doing, asking how Sean and Katherine are doing. I'm so overwhelmed by the love and support everyone has given, and I am often brought to tears reading your texts, emails, posts, etc. I am so very lucky to have the family and friends I do. It is during hard times when you come to appreciate what you have in life. I have so much. So very much. We're ok. I promise. I have family close and they help.
But as you can imagine, two straight weeks of nausea leaves me out of pocket and after that, my life becomes about answer people. Then it becomes hard just to keep talking about it over and over and over again. That's why I decided to start this blog. I thought it a bit cheesy at first, but to hell with cheese. I need ease right now. I may go a while without posting, but when there is something new, I will update it here. I promise. Please continue to keep in touch otherwise. For the cancer news, though, this is the place. It's just easier to keep it in a pocket. It controls so much right now. I need some time without it now and then.
Also, many have offered services and would like to know any way to help. Right now I'm good, but what you can do is join the fight. Donate. Walk. Wear a bracelet. Any organization you choose. Funding for cancer research is being cut, and we don't need that. We need a cure. It's out of control. More than 1 in 3 people are affected by cancer at some stage in life. 1 in 3. Look around you. How many people do you know?
I'm off to bed for now. I need my beauty sleep.
xo,
Lisa
PS - Don't now go off and look at the statistics for cancer of an unknown primary. You'll just depress yourself. And the key is - it's unknown. Remember that. ;)
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