I guess there was a reason for my scanxiety. Seriously, it was worse this time than it usually is...and it turns out it was with good reason. Since starting at Mass General Hospital over a year ago, I have become used to hearing, "Your scans look great." or "Your scans are amazing!" But this time I just had a feeling I wouldn't hear that...and I didn't. What I heard instead was, "Well, while the tumor we radiated looks good, unfortunately your cancer has spread."
I now have 8 new, very small tumors on various parts of my liver, and a microscopic one in my lung. I started back on chemo a couple of weeks ago. I am trying to stay positive - really, I am. But it's harder this time. I was doing so well for so long that I had kind of hoped it would just...go away. But apparently that's not to be the case. So the new hope is that chemo will bring about some kind of remission for awhile, and that I will get "chemo breaks" from time to time, but the nature of this cancer is that, since it spread in the few months I didn't have chemo, I will need to be on it for the foreseeable future.
I left the doctor's office feeling pretty defeated. While my oncologists are great at the medical aspects, sometimes they aren't great in the emotional arena. I think sometimes the more specialized they become, the more clinical they are. The radiation oncologist did say they will be aggressive and will keep trying new things when the old stop working. But I still left feeling doomed.
The following week, however, when I went for my chemo, I met with the nurse practitioner, Caroline, who often does my check-ups and she put it in a much better perspective for me to handle. She said she wants me to start thinking of this as a chronic illness, like diabetes, and to view the chemo as "management." My chemo nurse, Julie (or Saint Julie, as I call her), got me to see it as a setback, and not the end. She, too, said it's just a new fight and she agrees with Caroline that I need to start thinking of the chemo as a way to manage it.
Unfortunately, I can't be on the same clinical trial I was on last year. Once you stop it for any reason, such as radiation, you are done. So now I am on two of the three drugs I was on before, and hoping and praying they help. If not, we try new ones. So, faced with all of the bad news, what did I do? Why, booked an all-inclusive, totally out of our budget trip to Disneyworld, of course. Upgrade your rooms? Yes, please! Deluxe meal package? Absolutely! Park-hopper tickets? But of course! What the hell...if we waited until we could afford it the boys will be out of college. We leave June 29th. And I'm not putting things off anymore. Which means that the hardwood floors I have wanted installed in the kitchen will also be making their appearance this summer.
Well, that's the news for right now. I am hoping that my next set of scans, which will be after we get home from Florida, show some progress against this beast. In the meantime, I am trying to claw my way up to "positivity peak", because I do really believe it helps. But I'm not there yet...about halfway, I would say. I'll get there, because I have so many wonderful people loving me, supporting me, and just being there for me. And I hope you all know, I love you right back!
xoxo Joanna
Sunday, June 2, 2013
Wednesday, May 1, 2013
Scanxiety
Scanxiety...the fear of getting scan results back. I didn't make up the word. I read it on a website, but it definitely fits me. I have a CT scan and MRI coming up next week, and the anxiety has been growing daily. It is always like this for me before a scan.
I finished radiation about two months ago, and have been back at work since the end of March. Working has been good for my soul...it helps me to focus on something besides me. I have been feeling good. The doctor wasn't kidding about the exhaustion, though. When I first got home, all I wanted to do was sleep. So much so that I thought something was wrong. But the doctor said considering the amount of radiation he gave me to a major organ, it was completely normal. That has gotten better with time, but I am still pretty wiped by the end of the day.
The hope is that the radiation killed the main tumor, and that the smaller lesions that were spotted during surgery just...stay dormant, go away, or are already dead. They have always been too small to show up on scans, so we don't know. The doctor said that the first post-radiation scan is the least informative. What they are looking for is the dead cancer cells to be absorbed by the body, and this takes time so it often doesn't start showing up for months. My scanxiety has to do with the lesions...I am afraid a scan will show that they have started growing, and we'll be back to square one. My husband keeps reminding me that I always start worrying like this before a scan, and make myself completely crazy, and then get good news. I'm hoping that's what happens this time! It's just so hard...
So I will continue to do what I have been doing. I will try to think only positive thoughts. I will meditate and pray and visualize my tumors shriveling up and dying. I will drink my kale, spinach, banana, strawberry, flaxseed shakes every morning - you have no idea how icky they are - and hope that somehow I am doing something to help myself. I will keep smiling, even when I don't feel like it, because it does feel good to smile - and who needs frown lines? I will keep trying to live today and not waste it with worry. When all of this still isn't enough, I take an Ativan. What the hell - they help!
So...keep your fingers crossed for me and for beautiful scans. Then I can postpone the scanxiety...until the next scan, anyway!
xoxo Joanna
I finished radiation about two months ago, and have been back at work since the end of March. Working has been good for my soul...it helps me to focus on something besides me. I have been feeling good. The doctor wasn't kidding about the exhaustion, though. When I first got home, all I wanted to do was sleep. So much so that I thought something was wrong. But the doctor said considering the amount of radiation he gave me to a major organ, it was completely normal. That has gotten better with time, but I am still pretty wiped by the end of the day.
The hope is that the radiation killed the main tumor, and that the smaller lesions that were spotted during surgery just...stay dormant, go away, or are already dead. They have always been too small to show up on scans, so we don't know. The doctor said that the first post-radiation scan is the least informative. What they are looking for is the dead cancer cells to be absorbed by the body, and this takes time so it often doesn't start showing up for months. My scanxiety has to do with the lesions...I am afraid a scan will show that they have started growing, and we'll be back to square one. My husband keeps reminding me that I always start worrying like this before a scan, and make myself completely crazy, and then get good news. I'm hoping that's what happens this time! It's just so hard...
So I will continue to do what I have been doing. I will try to think only positive thoughts. I will meditate and pray and visualize my tumors shriveling up and dying. I will drink my kale, spinach, banana, strawberry, flaxseed shakes every morning - you have no idea how icky they are - and hope that somehow I am doing something to help myself. I will keep smiling, even when I don't feel like it, because it does feel good to smile - and who needs frown lines? I will keep trying to live today and not waste it with worry. When all of this still isn't enough, I take an Ativan. What the hell - they help!
So...keep your fingers crossed for me and for beautiful scans. Then I can postpone the scanxiety...until the next scan, anyway!
xoxo Joanna
Sunday, February 17, 2013
Hope
For the past several months, I've been thinking about the word Hope. Maybe because in the last 10 months I have felt hope ripped away and then tentatively handed back, and have had to juggle it so precariously since then. So it seems perfectly natural and completely right that for this stage of my journey, I have found a place called Hope Lodge. There are several Hope Lodges throughout the country. The one I am staying at is in the Jamaica Plains section of Boston. It is a place for people to stay when they are receiving cancer treatment in Boston and live too far to commute everyday.
The Hope Lodge is free of charge, which is not only amazing, but to someone looking at her last remaining sick days running out soon, a complete Godsend. Each guest gets their own suite complete with a small living room, a bathroom, and a bedroom with two beds, in case you want to have a caregiver stay with you. There is a big community dining room with 4 kitchens and everyone is responsible for their own food and meals, but usually some group, corporation, or charity sponsors a catered dinner a few nights a week. A van takes us to and from appointments daily, also free of charge. Google it...it is pretty awesome!
I was not sure what to expect as I was driving to the Hope Lodge two weeks ago. I was pretty apprehensive about "communal living" with a group of people I didn't know...college was a long time ago and I'm not a teenager anymore! I was afraid I would find a depressing place with an even more depressing group of people. What I found, instead, was an incredible place filled with truly amazing, wonderful people. Within two days, I met people who I know will be in my life forever. The courage and inspiration that fills those walls humbles me every day. And because we are all battling the same demon, there is an understanding that makes me feel completely at home. Don't get me wrong, my friends, family, coworkers, EVERYONE has been great to me and has tried to understand what I am going through. But really, unless you are "in the club", so to speak, you can't really know. I think that is why I have come to view the Hope Lodge as my haven. There, I don't feel like "cancer girl." My situation is the norm, not the exception. We can talk about chemo and radiation and REALLY understand what they are. We can commiserate about the side effects of treatment. We talk about how lucky we are to be in Boston...many of the guests there are receiving the same Proton Beam Radiation I am, and they come from all over the United States. It comforts me to realize that if people are coming from California, Michigan, and Ohio it is a treatment I am lucky to be close to. But because we all (except the caregivers) have cancer, we mostly don't feel the need to even talk about it beyond the initial "what kind do you have" conversation. We talk about everyday things, like the weather. We watch movies together and talk about cute actors. We talk about our families and how much we miss them, and how some of us are lucky enough to go home for the weekends while others are lucky to have a spouse, sibling, or parent staying with them. We text each other our treatment schedules so we can eat dinner together. Last weekend, when the blizzard hit while I was home, I had texts asking how I was and did I need any help getting back for my next treatment? Ah, I truly love these people! They have made my separation from my family bearable. I love how when we get off the van at the hospital and go our separate ways for our appointments someone invariably says, "See you back at the Lodge!" like we are on vacation together at a fine resort. It may not be a resort, and I'm certainly not on vacation, but the Hope Lodge has come to feel like a home-away-from-home. It, and the people in it, have given me hope that things will turn out okay, that I will turn out okay. And I have come to realize how very important that is, because if you don't have hope, you really don't have anything.
I'll be talking to you...
The Hope Lodge is free of charge, which is not only amazing, but to someone looking at her last remaining sick days running out soon, a complete Godsend. Each guest gets their own suite complete with a small living room, a bathroom, and a bedroom with two beds, in case you want to have a caregiver stay with you. There is a big community dining room with 4 kitchens and everyone is responsible for their own food and meals, but usually some group, corporation, or charity sponsors a catered dinner a few nights a week. A van takes us to and from appointments daily, also free of charge. Google it...it is pretty awesome!
I was not sure what to expect as I was driving to the Hope Lodge two weeks ago. I was pretty apprehensive about "communal living" with a group of people I didn't know...college was a long time ago and I'm not a teenager anymore! I was afraid I would find a depressing place with an even more depressing group of people. What I found, instead, was an incredible place filled with truly amazing, wonderful people. Within two days, I met people who I know will be in my life forever. The courage and inspiration that fills those walls humbles me every day. And because we are all battling the same demon, there is an understanding that makes me feel completely at home. Don't get me wrong, my friends, family, coworkers, EVERYONE has been great to me and has tried to understand what I am going through. But really, unless you are "in the club", so to speak, you can't really know. I think that is why I have come to view the Hope Lodge as my haven. There, I don't feel like "cancer girl." My situation is the norm, not the exception. We can talk about chemo and radiation and REALLY understand what they are. We can commiserate about the side effects of treatment. We talk about how lucky we are to be in Boston...many of the guests there are receiving the same Proton Beam Radiation I am, and they come from all over the United States. It comforts me to realize that if people are coming from California, Michigan, and Ohio it is a treatment I am lucky to be close to. But because we all (except the caregivers) have cancer, we mostly don't feel the need to even talk about it beyond the initial "what kind do you have" conversation. We talk about everyday things, like the weather. We watch movies together and talk about cute actors. We talk about our families and how much we miss them, and how some of us are lucky enough to go home for the weekends while others are lucky to have a spouse, sibling, or parent staying with them. We text each other our treatment schedules so we can eat dinner together. Last weekend, when the blizzard hit while I was home, I had texts asking how I was and did I need any help getting back for my next treatment? Ah, I truly love these people! They have made my separation from my family bearable. I love how when we get off the van at the hospital and go our separate ways for our appointments someone invariably says, "See you back at the Lodge!" like we are on vacation together at a fine resort. It may not be a resort, and I'm certainly not on vacation, but the Hope Lodge has come to feel like a home-away-from-home. It, and the people in it, have given me hope that things will turn out okay, that I will turn out okay. And I have come to realize how very important that is, because if you don't have hope, you really don't have anything.
I'll be talking to you...
Tuesday, January 1, 2013
The end of chemo...?
December 27th marked, hopefully, my last day of chemo. I say "hopefully" because that is the plan for now. I am scheduled to have Proton-Beam Radiation during the first three weeks in February. The oncologist is confident that will kill the original tumor. Then it is a matter of scans every 3 months to monitor things. We are hoping the little lesions will just remain dormant or are dead, but there is no way of knowing. They are too small to show up on a CAT scan or an MRI. But they are there, and I can't pretend they aren't. My doctor said it would be a "long shot" for nothing to pop back up...partly because of the lesions being there, and partly because of the hideous nature of the cancer I have...it reoccurs more than 50% of the time. But, you know what? I am not a statistic...I am Joanna. I was told it was an incredible long shot for my tumor to ever shrink enough to get rid of, yet it did. And I refuse to live fearful everyday of what will happen.
The doctor told me they never tell people "You are cancer-free" when they get a clean scan, because they know that sometimes there are things they can't see. They instead say, "Your scan was clean." I am hoping to hear this every 3 months.
Between now and radiation will be a busy time. I have to have another CAT scan, even though I just had one. The radiation protocol calls for a scan within a month of radiation, so off to Worcester I go on Thursday to visit with my friends, the scan techs. We are on a first-name basis now, and one of them always points out that my birthday is the same as the lead singer of the group Phish, his favorite band. The CAT scans wouldn't be so bad if I didn't have to drink the barium crap. Oh, they try to hide the flavor by calling it "Mochachino..." yeah, right. Coffee flavored crap!
Then, on the 7th I have a consult to go over the scan. The next day, it is back to Boston to have gold seeds implanted in my liver. The seeds help them guide the radiation beams. I forgot to ask if they are 24 karat. I could be quite valuable after this! Apparently they implant them with a long needle, and I will be given good drugs, so bring it on!
Then, on the 14th and 15th I have "breathing and mapping" sessions. From what I can tell, this involves me holding my breath while they draw all over me. Then I am free until the first Monday in February, which is my first day of radiation. In between all of these appointments I am going to continue to try to work, because very shortly I will be out of sick days...and then it is no pay when I'm out. Yikes! But whatever, I will do what I have to do. And that's what credit cards are for anyway!
Because radiation is 5 days a week for 3 weeks, I will be staying at the Hope Lodge in Worcester (the one in Boston is full). This is a place where I can stay for free, and they will shuttle me to and from radiation. While it is a blessing that I have a free place to stay, my kids are having a hard time with the fact that I will be away from them. Well, actually, Zach seems to be doing okay. He is definitely a more "go with the flow" kind of kid. He has told me that although he doesn't like the idea of my being away, he knows I can come home on the weekends and he will be alright. Sam, on the other hand, has let me know that 5 nights away at a time is too much. "Two nights is all I can do," he said. He gets teary whenever we talk about it, and then refuses to talk. So we write to each other instead. I set up a "mailbox" in his room (his toolbox), and we write back and forth and he is able to get his feelings out this way. He is sad, which makes me sad. His biggest upset is that I will be away on my birthday, and we will have to celebrate it the next day. I reminded him that last year both he and Zach were barfing on my birthday and we had to celebrate later in the week...but this hasn't helped. I have been in contact with the school social worker at their school to help them out during this time. And I told him he can even skip a day of school to come visit me if he needs to. In the meantime, we will practice our Skype skills.
So, at the end of the three weeks, my oncologist says my big tumor will be dead. He is quite sure. Apparently the Proton-Beam Radiation is powerful stuff. From what I understand, it is able to deliver higher doses of radiation in a safer way than regular radiation. Less of the nearby tissue is harmed. Side effects are extreme fatigue, some scarring on the skin, and sometimes stomach issues. Since my tumor is close to my stomach, this may be an issue. I have had lots of stomach pains the last couple of months due to chemo. Apparently, because chemo kills fast-growing cells and stomach lining contains these kinds of cells, gastritis can be common. All I know is, if I forget to take my two doses of Zantac everyday I wake up in excruciating pain. Luckily I don't forget that often, so it isn't bad.
My doctor wants me to take about 4 weeks off after radiation to recover. I just smile and say "We'll see." I have to remind him that I tend to bounce back faster than they think I will. We will enter into what I like to call "negotiations" when radiation is done. I am confident I can talk him down a week or so! I will go stir crazy if not.
So that's the plan for now, people. Keep me in your thoughts, pray, chant, bang a drum, or do whatever you like...just try to send some positive energy my way. While I try my best to be upbeat and positive, sometimes the reality of my situation slaps me in the face and completely knocks me for a loop. But I am a fighter and I will continue to kick cancer's ass...I just know it.
The doctor told me they never tell people "You are cancer-free" when they get a clean scan, because they know that sometimes there are things they can't see. They instead say, "Your scan was clean." I am hoping to hear this every 3 months.
Between now and radiation will be a busy time. I have to have another CAT scan, even though I just had one. The radiation protocol calls for a scan within a month of radiation, so off to Worcester I go on Thursday to visit with my friends, the scan techs. We are on a first-name basis now, and one of them always points out that my birthday is the same as the lead singer of the group Phish, his favorite band. The CAT scans wouldn't be so bad if I didn't have to drink the barium crap. Oh, they try to hide the flavor by calling it "Mochachino..." yeah, right. Coffee flavored crap!
Then, on the 7th I have a consult to go over the scan. The next day, it is back to Boston to have gold seeds implanted in my liver. The seeds help them guide the radiation beams. I forgot to ask if they are 24 karat. I could be quite valuable after this! Apparently they implant them with a long needle, and I will be given good drugs, so bring it on!
Then, on the 14th and 15th I have "breathing and mapping" sessions. From what I can tell, this involves me holding my breath while they draw all over me. Then I am free until the first Monday in February, which is my first day of radiation. In between all of these appointments I am going to continue to try to work, because very shortly I will be out of sick days...and then it is no pay when I'm out. Yikes! But whatever, I will do what I have to do. And that's what credit cards are for anyway!
Because radiation is 5 days a week for 3 weeks, I will be staying at the Hope Lodge in Worcester (the one in Boston is full). This is a place where I can stay for free, and they will shuttle me to and from radiation. While it is a blessing that I have a free place to stay, my kids are having a hard time with the fact that I will be away from them. Well, actually, Zach seems to be doing okay. He is definitely a more "go with the flow" kind of kid. He has told me that although he doesn't like the idea of my being away, he knows I can come home on the weekends and he will be alright. Sam, on the other hand, has let me know that 5 nights away at a time is too much. "Two nights is all I can do," he said. He gets teary whenever we talk about it, and then refuses to talk. So we write to each other instead. I set up a "mailbox" in his room (his toolbox), and we write back and forth and he is able to get his feelings out this way. He is sad, which makes me sad. His biggest upset is that I will be away on my birthday, and we will have to celebrate it the next day. I reminded him that last year both he and Zach were barfing on my birthday and we had to celebrate later in the week...but this hasn't helped. I have been in contact with the school social worker at their school to help them out during this time. And I told him he can even skip a day of school to come visit me if he needs to. In the meantime, we will practice our Skype skills.
So, at the end of the three weeks, my oncologist says my big tumor will be dead. He is quite sure. Apparently the Proton-Beam Radiation is powerful stuff. From what I understand, it is able to deliver higher doses of radiation in a safer way than regular radiation. Less of the nearby tissue is harmed. Side effects are extreme fatigue, some scarring on the skin, and sometimes stomach issues. Since my tumor is close to my stomach, this may be an issue. I have had lots of stomach pains the last couple of months due to chemo. Apparently, because chemo kills fast-growing cells and stomach lining contains these kinds of cells, gastritis can be common. All I know is, if I forget to take my two doses of Zantac everyday I wake up in excruciating pain. Luckily I don't forget that often, so it isn't bad.
My doctor wants me to take about 4 weeks off after radiation to recover. I just smile and say "We'll see." I have to remind him that I tend to bounce back faster than they think I will. We will enter into what I like to call "negotiations" when radiation is done. I am confident I can talk him down a week or so! I will go stir crazy if not.
So that's the plan for now, people. Keep me in your thoughts, pray, chant, bang a drum, or do whatever you like...just try to send some positive energy my way. While I try my best to be upbeat and positive, sometimes the reality of my situation slaps me in the face and completely knocks me for a loop. But I am a fighter and I will continue to kick cancer's ass...I just know it.
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