Hi there.
Yes, it has been about a year and a half since I last blogged, and I don't have a good reason. I guess I just didn't have anything I wanted to say.
When we last left off, in June of 2013, I had gotten some bad news. My cancer had spread to other parts of my liver, and to my lung. Since then, things have continued to be their usual up and down rollercoaster ride.
Once I got the news, I immediately went back on chemo, and my tumors started to shrink again. They continued to shrink or remain "stable", as they call it, for more than a year. During that time, I continued to try to live life as normal. While chemo is a Godsend, and has helped me tremendously, one of the drugs gave me neuropathy in my feet. This means my toes are kinda numb, and I used to get horrible pain in them when I had to stand or walk too long. But at the end of summer, the chemo that had worked at keeping the tumors at bay for 2 and a half years stopped working. Things started growing again :( So off that chemo, which has made the neuropathy a little better.
The decision was made to put me on a new chemo called 5-FU (ha ha FU...kinda fitting!) In the meantime, they decided to do another biopsy because there wasn't anything left of my first biopsy, and they wanted to study the make-up of my tumors, to see if there are any mutations. So that took place in late August, and I started the 5-FU. What I hated most about the new chemo was that they started it off at the hospital, but then I had to wear a chemo pump for 48 hours at home. It was portable, but who feels like going anywhere wearing a chemo pack?? I sure didn't. This chemo only lasted 8 weeks, and then an MRI showed it wasn't working for me. When the doctors gave me this news, however, they weren't that upset. Instead, they were very excited about the results of my biopsy, which shows my cancer has a mutation called IDH1. Don't ask me what that is...I still don't quite know. But what the doctors were excited about was a clinical trial happening that focuses only on cancers with the IDH1 mutation. Apparently, somebody has been studying this mutation for years, and has developed a drug called AG-120 that targets the mutation. This mutation can happen in all different kinds of cancers. One study of this drug has been done so far in people with "liquid tumors" (like leukemia and other blood cancers) that have this mutation and the results have been very promising. So now they are trying it on people with solid tumors and are hoping to get the same results. My doctors wanted me enrolled immediately. Of course, nothing can ever be that easy and at first I didn't meet the cut off level for something on the EKG they had to give first. A few doses of potassium and magnesium helped and on my third day of EKGs, I "passed" and was allowed to enroll. I started my new drugs on December 1st. On a positive note, Alex the EKG lady and I are now fast friends!
Because this is what they call a "phase 1" trial, which means it is just starting out, The first couple of weeks were pretty intense. I had to be there for 4 days in a row so once I took the pills, they could monitor my blood for twelve hours, to see how fast my body metabolizes it. Now I just take the pills at home everyday, and go to Boston every two weeks for bloodwork and EKGs. One of the downsides of this drug is that I had to go off the Prilosec I have been on for two years due to the damage chemo and radiation have done to my stomach lining. You can't take it if you are on an acid-blocker because you don't absorb the drug as well. So, within two weeks, I had an ulcer. A bleeding ulcer. Not fun at all. I am now on some horrible pink liquid four times a day. I had an endoscope, which showed the ulcer was healing but my stomach lining was very inflammed. I am still dealing with that, and am eating pretty blandly so as not to set off the stomach acid gods. I think it is going to be an up and down battle.
Soon I will have to have another biopsy, and in two weeks I have scans to see if this new chemo is working. Cross your fingers or say a prayer, people,....I am nervous! I really need this to work.
There has been another change in my life, too. I have left my job, gone out on disability until at least the end of the year. This was SUCH a hard decision. I love my job. I love my co-workers, and mostly my students, and I miss it tremendously. But the fatigue was getting to me, and the stress of everything going on made it hard to concentrate on my job, so I knew it was best to take this time to focus on this new study, to rest, and to just be.
So far, I am not loving being a "housewife." I need more mental stimulation than I am getting. I have decided to clean out every room in the house, starting with the kitchen cabinets. I'll let you know how that goes! I am trying to stay busy so I don't think too much. Because when I think too much I start to struggle with anxiety. While leaving work has lessened some of my stress, it has also created new stress. For one thing, I am bored. All of my friends work so there isn't anyone to play with during the day. For another thing, disability only pays me about 35% of my former pay, so finances are a big stress. And I always get anxious when scans/results are coming up and I can really work myself up without even trying. I am going to explore things like acupuncture to help with this. And I have a friend that does Reike so I will be calling her soon, too!
So that's all the news from here right now. I am working hard at trying to believe this new, targeted therapy is going to help me. I am working to try to stay positive. I'll be honest...I don't always do a good job of this. But I do keep my eye on the prize. My goal is to make it to Zach and Sam's high school graduation, which is in a little over 6 years. Most days I believe I will be there. And on the days I don't...I take an Ativan! But I had a dream the other night. In my dream, I was in the hospital for something, and Sam and Zach were visiting me. They were all grown up. I have decided this is a sign I will be here to see them when they are grown up. And that's what I'm holding on to!
Talk to you soon, and thanks for reading!
xoxo Joanna
Wednesday, January 14, 2015
Sunday, June 2, 2013
Reality strikes
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
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
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.
Saturday, November 24, 2012
Words
Word, words, words. When you have Cancer, you are bombarded with words you don't want to hear. Mass, tumor, malignant, biopsy, oncology, chemotherapy, radiation, etc. All words with negative connotations that I never dreamed would be part of my world. In the beginning, I couldn't handle even thinking about any of these words and how they related to me. But then it got worse. After my first failed surgery, a resident was standing by my bedside as I was coming out of anesthesia. When I asked him what happened during surgery, he said, "I'm sorry, it has spread too much." So I said, "Okay, with some chemo it could probably shrink, right?" He said, "No, I'm very sorry, but it looked terminal." Terminal. TERMINAL. I went from thinking I was having my tumor removed to being told I was TERMINAL. That was the worst of the words that have been thrown at me. Terminal means why bother? It means no hope. And it means leaving my family. So I did what anyone would do who was still coming out of anesthesia and was told she was going to die - I flipped out. Bad. I started screaming for Joe and freaking out so bad I had to be sedated. Joe called the oncologists office and asked that someone come and talk to me, so they sent one of their nurse practitioners who held my hand and told me not to give up. She said with chemo I had some time..maybe a few years. When I asked if I could possibly have 10 years so I could raise Zach and Sam, the chief surgeon, who was also in the room, said no, it wasn't a possibility. I stopped listening at this point and pretended to fall asleep so they would stop saying, well, the WORDS. But of all of them, TERMINAL stayed with me. I remember crying to my friend Andrea that I would never know what my boys would look like as teenagers or adults. I went home devastated and pretty much stayed that way for a couple of weeks.
When I went back to work, it was with a fake smile plastered on my face. I didn't want to talk about everything that had happened, and I certainly didn't want to share "the words" with everyone. But I started talking to a coworker named Linda. Although we had never really gotten to know each other well, she completely reached out to me upon my return and shared her life story with me. She had breast cancer when her kids were young, and it spread to her liver. She decided to do everything in her power to help herself. She researched everything she could...visualization, meditation, Eastern medicine, as well as many other things. She put all of these things into practice, and, well, 20-something years later is here, healthy, and a big proponent of self-healing. After she shared her story with me, I got up the courage to tell her about my experience in the hospital. It took forever, and a lot of tears, for me to recount the "terminal" discussion with the resident. Linda's reaction, and her "words", changed my life. I expected her to tell me how sorry she was that I was terminal, to ask if there was anything she could do, etc. Instead, she said something so profound, so life-changing, that I decided I would listen to her, and not the resident.
What she said was....wait for it...
"Yeah, well that man is an idiot."
Huh?
"You're going to be fine. Trust me."
What? How could she say that? He was a doctor, he saw my tumor.
Linda waved that discussion away when I brought it up.
"He doesn't know YOU." She kept saying, "You're going to be fine. I just know it."
She said it with such conviction that I decided to believe her. Suddenly, I felt hope and the will to fight this. She taught me how to visualize my tumor shrinking. She told me to always tell myself I was healing, because then my mind and body would believe it. She got me some CDs and books by Bernie Siegel, a former Yale surgeon who has studied cancer patients who have beaten the odds. He, too, is a big proponent of using your mind to try to heal.
So, I read everything I could, and decided to combine my traditional medicine - chemotherapy- with the not-so-traditional. I visualize my tumor shrinking every night. I pray everyday. I try to keep "live and love" messages running through my body. I think positive (which isn't always easy). I have continued to go to work because it gives me purpose to my day ( and I would stress about finances if I didn't.) I have tried to adhere to a nutritional diet that some feel helps inhibit tumor growth. It isn't easy and some days are better than others. Lately, I have been bad! But I'm trying to get back on track. The diet consists of no meat except grass-fed beef (because that is high in omega-3 and low in omega-6, and acts more like fish that beef in your body), no dairy, no sugar, no coffee (waaaaaaaaaa!), lots of spinach and kale and broccoli, as well as other fruits and veggies. Lots of high omega-3 foods like salmon, tuna, walnuts. Only whole grains. Really, it's how we should all be eating but it isn't easy to stick to. If you want an eye-opener about the link between food and health, watch the documentary "Forks over Knives". I was able to watch it on Hulu. You will never think about food the same way again.
Anyway, Linda's words, combined with the success I have had with chemo, have kept me positive so far throughout this experience, even when I've hit some bumps in the road. The fact that they found lesions when they tried to do the second surgery was not good. It means at some point, the cancer spread. Probably when the tumor was more spread out, it left "seeds" along other parts of my liver as it was shrinking. But because my main tumor has continued to shrink at such a remarkable rate, we are hoping the little ones are shrinking proportionally. Nobody knows because they are too small to see on the CAT scan.
"Shrinkage" is probably my favorite word to hear from the doctor. First, because I am such an adolescent at heart, I have to stifle a giggle every time they say "shrinkage" because all I can think about is George Costanza from Seinfeld. Yes, so immature, I know, but I have to find humor where I can! But then when I focus, I realize what a beautiful word it is because it means I have less cancer than the time before. And I like that. So all of these things have helped to keep me positive.
But, last week, I was confronted with a "word" that has made it very hard not to be negative. "Denied" is what Anthem Blue Cross/Blue Shield has decided about the Proton Beam Radiation Therapy the doctors feel is best for me. This isn't your standard radiation, and it does cost more. But many studies are showing it is better for the patient because it is more exact and can incorporate high dosages of radiation with very little damage to surrounding tissues. Anthem has decided it is "Investigational" and "not medically necessary." Neither is true. It has been used for years. My doctor wasn't surprised, and said this often happens, and we would keep appealing, but it has sent my emotions into a tailspin. I find myself in tears frequently lately, and I am working hard to climb back up to my positive peak. I am afraid what this will do to the timetable we have worked out. Tuesday is supposed to be my last chemo for awhile, followed by a CAT scan and MRI on Friday, so I can "detox" in preparation for the radiation. Work has already posted for a long-term sub for the month of January. I have prepared my kids for being away. Now, all that is up in the air and I hate it. I'm afraid that if Anthem doesn't change it's mind, it will mean getting the "second best" treatment options, which just isn't good enough when you are fighting for your life. So, right now, while I am trying to be positive, I'm scared, pissed, and heartsick.
Imagine a world where your DOCTORS could decide what is best for you, and not your insurance company. Wouldn't that be beautiful? But I will fight, fight, fight, them if necessary. I have already researched people who took them on and won. I plan on using the same techniques. In the end, if I have to hire a lawyer I will. But it sucks that I have to be worried about this. I try very hard not to feel sorry for myself, and most days I succeed. But please indulge me in a teeny, tiny pity party...DON'T I HAVE ENOUGH TO WORRY ABOUT WITHOUT THIS? SHOULDN'T MY EFFORTS GO TOWARD GETTING WELL??
Thank you, I feel better now. No more whining, well, for awhile at least, I promise.
I am hoping the next word I have to share with you all comes from Anthem, and is "approved."
I'll keep you posted!
When I went back to work, it was with a fake smile plastered on my face. I didn't want to talk about everything that had happened, and I certainly didn't want to share "the words" with everyone. But I started talking to a coworker named Linda. Although we had never really gotten to know each other well, she completely reached out to me upon my return and shared her life story with me. She had breast cancer when her kids were young, and it spread to her liver. She decided to do everything in her power to help herself. She researched everything she could...visualization, meditation, Eastern medicine, as well as many other things. She put all of these things into practice, and, well, 20-something years later is here, healthy, and a big proponent of self-healing. After she shared her story with me, I got up the courage to tell her about my experience in the hospital. It took forever, and a lot of tears, for me to recount the "terminal" discussion with the resident. Linda's reaction, and her "words", changed my life. I expected her to tell me how sorry she was that I was terminal, to ask if there was anything she could do, etc. Instead, she said something so profound, so life-changing, that I decided I would listen to her, and not the resident.
What she said was....wait for it...
"Yeah, well that man is an idiot."
Huh?
"You're going to be fine. Trust me."
What? How could she say that? He was a doctor, he saw my tumor.
Linda waved that discussion away when I brought it up.
"He doesn't know YOU." She kept saying, "You're going to be fine. I just know it."
She said it with such conviction that I decided to believe her. Suddenly, I felt hope and the will to fight this. She taught me how to visualize my tumor shrinking. She told me to always tell myself I was healing, because then my mind and body would believe it. She got me some CDs and books by Bernie Siegel, a former Yale surgeon who has studied cancer patients who have beaten the odds. He, too, is a big proponent of using your mind to try to heal.
So, I read everything I could, and decided to combine my traditional medicine - chemotherapy- with the not-so-traditional. I visualize my tumor shrinking every night. I pray everyday. I try to keep "live and love" messages running through my body. I think positive (which isn't always easy). I have continued to go to work because it gives me purpose to my day ( and I would stress about finances if I didn't.) I have tried to adhere to a nutritional diet that some feel helps inhibit tumor growth. It isn't easy and some days are better than others. Lately, I have been bad! But I'm trying to get back on track. The diet consists of no meat except grass-fed beef (because that is high in omega-3 and low in omega-6, and acts more like fish that beef in your body), no dairy, no sugar, no coffee (waaaaaaaaaa!), lots of spinach and kale and broccoli, as well as other fruits and veggies. Lots of high omega-3 foods like salmon, tuna, walnuts. Only whole grains. Really, it's how we should all be eating but it isn't easy to stick to. If you want an eye-opener about the link between food and health, watch the documentary "Forks over Knives". I was able to watch it on Hulu. You will never think about food the same way again.
Anyway, Linda's words, combined with the success I have had with chemo, have kept me positive so far throughout this experience, even when I've hit some bumps in the road. The fact that they found lesions when they tried to do the second surgery was not good. It means at some point, the cancer spread. Probably when the tumor was more spread out, it left "seeds" along other parts of my liver as it was shrinking. But because my main tumor has continued to shrink at such a remarkable rate, we are hoping the little ones are shrinking proportionally. Nobody knows because they are too small to see on the CAT scan.
"Shrinkage" is probably my favorite word to hear from the doctor. First, because I am such an adolescent at heart, I have to stifle a giggle every time they say "shrinkage" because all I can think about is George Costanza from Seinfeld. Yes, so immature, I know, but I have to find humor where I can! But then when I focus, I realize what a beautiful word it is because it means I have less cancer than the time before. And I like that. So all of these things have helped to keep me positive.
But, last week, I was confronted with a "word" that has made it very hard not to be negative. "Denied" is what Anthem Blue Cross/Blue Shield has decided about the Proton Beam Radiation Therapy the doctors feel is best for me. This isn't your standard radiation, and it does cost more. But many studies are showing it is better for the patient because it is more exact and can incorporate high dosages of radiation with very little damage to surrounding tissues. Anthem has decided it is "Investigational" and "not medically necessary." Neither is true. It has been used for years. My doctor wasn't surprised, and said this often happens, and we would keep appealing, but it has sent my emotions into a tailspin. I find myself in tears frequently lately, and I am working hard to climb back up to my positive peak. I am afraid what this will do to the timetable we have worked out. Tuesday is supposed to be my last chemo for awhile, followed by a CAT scan and MRI on Friday, so I can "detox" in preparation for the radiation. Work has already posted for a long-term sub for the month of January. I have prepared my kids for being away. Now, all that is up in the air and I hate it. I'm afraid that if Anthem doesn't change it's mind, it will mean getting the "second best" treatment options, which just isn't good enough when you are fighting for your life. So, right now, while I am trying to be positive, I'm scared, pissed, and heartsick.
Imagine a world where your DOCTORS could decide what is best for you, and not your insurance company. Wouldn't that be beautiful? But I will fight, fight, fight, them if necessary. I have already researched people who took them on and won. I plan on using the same techniques. In the end, if I have to hire a lawyer I will. But it sucks that I have to be worried about this. I try very hard not to feel sorry for myself, and most days I succeed. But please indulge me in a teeny, tiny pity party...DON'T I HAVE ENOUGH TO WORRY ABOUT WITHOUT THIS? SHOULDN'T MY EFFORTS GO TOWARD GETTING WELL??
Thank you, I feel better now. No more whining, well, for awhile at least, I promise.
I am hoping the next word I have to share with you all comes from Anthem, and is "approved."
I'll keep you posted!
Monday, October 29, 2012
What I have learned...
What I have learned from having cancer...
I know a woman who beat cancer twice. She is the most spiritual, giving person I have ever met. One thing she told me was that she has come to view having had cancer as a gift, because it taught her so many things about life. She considers her bouts with cancer to be positive experiences that shaped her life.
She is obviously a better person than I am.
I know one thing for sure: I will never, NEVER be glad I had cancer. Even if I live to be 100, I will never consider it a blessing in disguise. Because, although I have learned many things from this experience, and some of them have been positive, the scary, horrible, soul-sucking times will never disappear from my memory. I will never forget the nights I have curled up next to one of my sleeping boys, crying, whispering promises that I will fight, or apologies for what I am about to put them through. The gut-wrenching fear of wondering whether they will grow up motherless is seared in my brain. It is a pain that I can't ever forget. So no, I will never be able to say that having cancer was a positive thing. But I'd be a fool if I didn't try to learn something from this; if I didn't embrace some of the incredibly positive things that have come from going through this.Which, my friends, is different than viewing cancer as a positive...it is the enemy, and always will be.
So, here is what I have learned so far...and I know this is a work in progress!
First of all, I married the right man. Period. Well, actually, Exclamation point! From the beginning he has been my strength, my positive energy, and my biggest champion. His belief that I will overcome this has never wavered, and he has pulled me out of my deep old pits many times. Joey is my rock, my best friend, my soulmate. Yup, I definitely married the right man.
Secondly, wonderful, generous, kind-hearted souls are all around us. I never realized how many truly amazing people I have in my life. It is unbelievable. When I think of all of the people who have stepped forward to embrace me during this time, I can't help but cry. First, there are my friends. They have rallied around me and let me know I am never alone in this. I always have an ear to listen, a shoulder to cry on, or a hand to hold when I need it. They call, text, pop in, or shoot me emails to check in all the time. They drive me to chemo, make me dinner, watch my kids, and just generally make me realize how lucky I am to have them in my life. They are the true definition of friends...and you know who you are!
Then there are the people from my church...Church of Christ, Congregational of Newington. When Joe and I decided we wanted to belong to a church about 6 years ago, we "church shopped." We had very specific ideas of what we wanted for us and our kids...a place that welcomes everyone, that holds the same beliefs that we do about equality for all, and a place that would help us teach our children compassion, community involvement, and give them a sense of belonging. Well, let me tell you, we picked the right place! I never dreamed I would form so many friendships with so many awesome people. And through this nightmare our church has given me light and hope. From the start, I was bombarded with cards and well wishes. A prayer shawl was sent over to help me find comfort during those first, incredibly scary weeks. Someone set up a MealTrain for us...so every Tuesday and Thursday night somebody cooks dinner for us. It was something I fought against at first. I kept telling our minister it wasn't necessary, that I felt okay. I was embarrassed to have so much help. But she convinced me that people wanted to do something for us and this gave them a way to help. As I have become more and more tired from the chemo, it has literally been a Godsend! I don't know what I would do without all of these wonderful people.
And finally, there are the people I work with. I have always loved where I work...McGee Middle School. You will not find a finer group of people anywhere. I have always felt that way, but they have confirmed it for me these last few months. My special ed. department chipped in and bought me an IPad 3 to keep me occupied during chemo. Can you imagine?? The ladies of the building put together a basket of their favorite books for me to read. I have been given gift cards, restaurant cards, and they have even collected gas money to help with my numerous treks to Boston. How amazing is all of that??? In addition, there are the daily well-wishes from my co-workers who let me know that with one word they will cover my class if I need to put my feet up, and who have pretended that my chemo-induced acne really isn't that bad! I love them, one and all.
Third, I realize that there are some things I can control in this whole experience. A woman I work with, Linda, (she will be a whole other blog!) taught me that the mind is an amazing thing. If it can heal a cut or a bruise, why not cancer? She keeps reminding me to make sure by brain is telling my body that it is healing...and then my body will believe it. In my next blog I will write about her, and all of the "non-traditional" things I have done that I think have helped...well, they haven't hurt, anyway. Changing my eating habits with the help of a nutritionist has not only helped me keep my blood counts where they need to be, but I am 45 pounds lighter than I used to be. How's that for positive, huh?
So, while this has been a horrific experience I wouldn't wish on my worst enemy, as you can see there is always some light in the darkness. Lessons can be learned from even the most hideous of circumstances. I would give anything if I didn't have to figure this out in this way, but I will embrace what I have learned and hopefully use it to help someone else someday.
I'll be talking to you...
I know a woman who beat cancer twice. She is the most spiritual, giving person I have ever met. One thing she told me was that she has come to view having had cancer as a gift, because it taught her so many things about life. She considers her bouts with cancer to be positive experiences that shaped her life.
She is obviously a better person than I am.
I know one thing for sure: I will never, NEVER be glad I had cancer. Even if I live to be 100, I will never consider it a blessing in disguise. Because, although I have learned many things from this experience, and some of them have been positive, the scary, horrible, soul-sucking times will never disappear from my memory. I will never forget the nights I have curled up next to one of my sleeping boys, crying, whispering promises that I will fight, or apologies for what I am about to put them through. The gut-wrenching fear of wondering whether they will grow up motherless is seared in my brain. It is a pain that I can't ever forget. So no, I will never be able to say that having cancer was a positive thing. But I'd be a fool if I didn't try to learn something from this; if I didn't embrace some of the incredibly positive things that have come from going through this.Which, my friends, is different than viewing cancer as a positive...it is the enemy, and always will be.
So, here is what I have learned so far...and I know this is a work in progress!
First of all, I married the right man. Period. Well, actually, Exclamation point! From the beginning he has been my strength, my positive energy, and my biggest champion. His belief that I will overcome this has never wavered, and he has pulled me out of my deep old pits many times. Joey is my rock, my best friend, my soulmate. Yup, I definitely married the right man.
Secondly, wonderful, generous, kind-hearted souls are all around us. I never realized how many truly amazing people I have in my life. It is unbelievable. When I think of all of the people who have stepped forward to embrace me during this time, I can't help but cry. First, there are my friends. They have rallied around me and let me know I am never alone in this. I always have an ear to listen, a shoulder to cry on, or a hand to hold when I need it. They call, text, pop in, or shoot me emails to check in all the time. They drive me to chemo, make me dinner, watch my kids, and just generally make me realize how lucky I am to have them in my life. They are the true definition of friends...and you know who you are!
Then there are the people from my church...Church of Christ, Congregational of Newington. When Joe and I decided we wanted to belong to a church about 6 years ago, we "church shopped." We had very specific ideas of what we wanted for us and our kids...a place that welcomes everyone, that holds the same beliefs that we do about equality for all, and a place that would help us teach our children compassion, community involvement, and give them a sense of belonging. Well, let me tell you, we picked the right place! I never dreamed I would form so many friendships with so many awesome people. And through this nightmare our church has given me light and hope. From the start, I was bombarded with cards and well wishes. A prayer shawl was sent over to help me find comfort during those first, incredibly scary weeks. Someone set up a MealTrain for us...so every Tuesday and Thursday night somebody cooks dinner for us. It was something I fought against at first. I kept telling our minister it wasn't necessary, that I felt okay. I was embarrassed to have so much help. But she convinced me that people wanted to do something for us and this gave them a way to help. As I have become more and more tired from the chemo, it has literally been a Godsend! I don't know what I would do without all of these wonderful people.
And finally, there are the people I work with. I have always loved where I work...McGee Middle School. You will not find a finer group of people anywhere. I have always felt that way, but they have confirmed it for me these last few months. My special ed. department chipped in and bought me an IPad 3 to keep me occupied during chemo. Can you imagine?? The ladies of the building put together a basket of their favorite books for me to read. I have been given gift cards, restaurant cards, and they have even collected gas money to help with my numerous treks to Boston. How amazing is all of that??? In addition, there are the daily well-wishes from my co-workers who let me know that with one word they will cover my class if I need to put my feet up, and who have pretended that my chemo-induced acne really isn't that bad! I love them, one and all.
Third, I realize that there are some things I can control in this whole experience. A woman I work with, Linda, (she will be a whole other blog!) taught me that the mind is an amazing thing. If it can heal a cut or a bruise, why not cancer? She keeps reminding me to make sure by brain is telling my body that it is healing...and then my body will believe it. In my next blog I will write about her, and all of the "non-traditional" things I have done that I think have helped...well, they haven't hurt, anyway. Changing my eating habits with the help of a nutritionist has not only helped me keep my blood counts where they need to be, but I am 45 pounds lighter than I used to be. How's that for positive, huh?
So, while this has been a horrific experience I wouldn't wish on my worst enemy, as you can see there is always some light in the darkness. Lessons can be learned from even the most hideous of circumstances. I would give anything if I didn't have to figure this out in this way, but I will embrace what I have learned and hopefully use it to help someone else someday.
I'll be talking to you...
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