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...
Monday, October 29, 2012
Tuesday, October 16, 2012
The last 7 months
Well, the past 7 months of my life have been a roller coaster, to say the least. In April I was diagnosed with cancer...a pretty rare cancer called
Cholangiocarcinoma. Technically it is cancer of the bile ducts, but
mine started in the internal bile ducts in my liver (Intrahepatic Cholangiocarcinoma, to be exact) and then spread
through part of my liver. Google it if you must, but don't read too much...dire outcomes usually. Statistically, I am about 1 in a million (but some of you knew that already, didn't you?!)
I found it myself...Around late February/early March I kept feeling something in my upper right abdominal area, like a hard mass. I went to the doctor who didn't think it was anything but did bloodwork, which all came back fine. I told her I was sure it was something so they sent me for an ultrasound, which showed a 10 centimeter tumor in my liver. They then sent me for an MRI to see if it was cancer or a benign tumor. The MRI couldn't determine with certainty if it was cancer or a large hermangioma, so they biopsied it. It finally came back as cancer (on Good Friday!) but they still didn't know what kind. They thought it was a secondary cancer that had spread from somewhere else, so I went through 2 different gastroscopes, a colonoscopy, mammogram, etc. Pretty much anywhere I could be probed I was, but everything came back okay. They finally decided it had started in the liver. My oncologist sent me to a surgeon at Hartford Hospital, who said she wanted to try to remove it. Two days later I had laproscopic surgery, which they do right before they cut you open. The laproscopic showed it had spread too much and was covering the hepatic artery, so they couldn't do the surgery. Worse, a resident told me, as I was coming out of anesthesia, that I was "terminal." The surgeon reamed him for that, but did tell me that I had a less than 10 percent chance of it ever shrinking enough to be cured and when I asked if I would live at least 10 years, so I could see my kids grow up, she said no. As you can imagine, this sent me into a pretty dark place for awhile. Well, beyond dark, really. All I could think about was my boys growing up without me. Not a place I ever want to be in again. Luckily, I have some amazing people in my life and they convinced me not to believe her. A woman I work with shared with me her cancer story and how she recovered. She told me all about her belief in the mind-body connection and how the mind can cure the body. She got me reading some things that really helped me believe I could beat this, despite the statistics.
In the meantime, my oncologist in Hartford asked if I would be willing to go to Mass General to meet his brother, a radiological oncologist involved in a clinical research study on cholangiocarcinoma. I went and qualified for their study in both chemotherapy and radiation. The chemotherapy study is researching adding a new drug to the usual 2-drug combination for this cancer. It causes a horrible, acne-like rash on my face but they told me this is a good sign, it means its working on the tumor. So, I have been going for chemo every two weeks up at Mass General since the beginning of May. Since that time, the tumor shrunk off the artery in 3 months (which the doctor in Hartford told me wouldn't happen.) and I had a second attempted surgery. Unfortunately, the surgeon found other, very tiny lesions on my liver so they couldn't operate. Waking up a second time to the news they didn't operate was beyond upsetting, but I knew I just had to continue to fight this. So I have been! My latest CAT scan was awesome...my tumor has continued to shrink and they can't see the lesions on any scan because they are too small. The doctors are very pleased with how I have responded, so the new plan is a few more sessions of chemo, then 4 weeks off to "detox", and then I will be in Boston for 3 weeks of their special Proton-beam radiation. The radiological oncologist really thinks he can kill the tumor with this. Then it is a matter of figuring out how to monitor the lesions when they are too small to see. It could mean more chemo to try to do them in, or waiting and seeing what happens. Regardless, I really believe I am going to be okay. There was a time when I didn't know this, but, I can't explain why, now I just know everything is going to be okay. I know my fight isn't over, but I'm going to continue to beat the shit out of my opponent!
This has been anything but easy, but I know others have had it so much worse than me. While Chemo sucks, makes me exhausted for days, can't touch or drink anything cold for a week after, and other lovely side effects, like neuropathy in my hands and feet, it hasn't completely incapacitated me. I have been able to work most of the time with a few days here and there to rest. I think of my chemo as liquid gold because it has been working. My oncologists call me their "rock star of blood counts" because mine have never dropped low enough to have to skip chemo, which usually happens. I have made their clinical research look pretty darn good! According to them, my response to the trial drugs has been "phenomenal!" In addition to chemo, I have been working at visualization, meditation, changed my eating habits and am trying to eat a high omega-3 diet which my nutritionist believes helps stop tumor growth (no sugar, no dairy, no red meat except for grass-fed beef, tons of greens, etc.) Well, no sugar except for when I need some, anyway! I am also a firm believer in prayer, and I know the prayers of many have touched me. Whatever it is, something is working. Personally, I think cancer just didn't realize what a stubborn, hard-core bitch I am. I will NOT have it! So don't feel sorry for me...feel sorry for the cancer that dared to mess with me...play taps for it, as a matter of fact, because its days are numbered!
7 months ago I was given virtually no hope. Now, my tumor is about a third of the size it was, is no longer on the artery, and in a couple of months will be blasted to smithereens by some high-tech machine I can't even begin to understand. I thank God everyday for Mass General, they are amazing and have truly saved my life.
Well, that's my story up until now. It has been an unbelievably hard 7 months, but I am trying to take some positive from it. The number of amazing people I have in my life humbles me every day. That is a whole other blog...I think the next entry will be all about what having cancer has taught me. Stay tuned!
I found it myself...Around late February/early March I kept feeling something in my upper right abdominal area, like a hard mass. I went to the doctor who didn't think it was anything but did bloodwork, which all came back fine. I told her I was sure it was something so they sent me for an ultrasound, which showed a 10 centimeter tumor in my liver. They then sent me for an MRI to see if it was cancer or a benign tumor. The MRI couldn't determine with certainty if it was cancer or a large hermangioma, so they biopsied it. It finally came back as cancer (on Good Friday!) but they still didn't know what kind. They thought it was a secondary cancer that had spread from somewhere else, so I went through 2 different gastroscopes, a colonoscopy, mammogram, etc. Pretty much anywhere I could be probed I was, but everything came back okay. They finally decided it had started in the liver. My oncologist sent me to a surgeon at Hartford Hospital, who said she wanted to try to remove it. Two days later I had laproscopic surgery, which they do right before they cut you open. The laproscopic showed it had spread too much and was covering the hepatic artery, so they couldn't do the surgery. Worse, a resident told me, as I was coming out of anesthesia, that I was "terminal." The surgeon reamed him for that, but did tell me that I had a less than 10 percent chance of it ever shrinking enough to be cured and when I asked if I would live at least 10 years, so I could see my kids grow up, she said no. As you can imagine, this sent me into a pretty dark place for awhile. Well, beyond dark, really. All I could think about was my boys growing up without me. Not a place I ever want to be in again. Luckily, I have some amazing people in my life and they convinced me not to believe her. A woman I work with shared with me her cancer story and how she recovered. She told me all about her belief in the mind-body connection and how the mind can cure the body. She got me reading some things that really helped me believe I could beat this, despite the statistics.
In the meantime, my oncologist in Hartford asked if I would be willing to go to Mass General to meet his brother, a radiological oncologist involved in a clinical research study on cholangiocarcinoma. I went and qualified for their study in both chemotherapy and radiation. The chemotherapy study is researching adding a new drug to the usual 2-drug combination for this cancer. It causes a horrible, acne-like rash on my face but they told me this is a good sign, it means its working on the tumor. So, I have been going for chemo every two weeks up at Mass General since the beginning of May. Since that time, the tumor shrunk off the artery in 3 months (which the doctor in Hartford told me wouldn't happen.) and I had a second attempted surgery. Unfortunately, the surgeon found other, very tiny lesions on my liver so they couldn't operate. Waking up a second time to the news they didn't operate was beyond upsetting, but I knew I just had to continue to fight this. So I have been! My latest CAT scan was awesome...my tumor has continued to shrink and they can't see the lesions on any scan because they are too small. The doctors are very pleased with how I have responded, so the new plan is a few more sessions of chemo, then 4 weeks off to "detox", and then I will be in Boston for 3 weeks of their special Proton-beam radiation. The radiological oncologist really thinks he can kill the tumor with this. Then it is a matter of figuring out how to monitor the lesions when they are too small to see. It could mean more chemo to try to do them in, or waiting and seeing what happens. Regardless, I really believe I am going to be okay. There was a time when I didn't know this, but, I can't explain why, now I just know everything is going to be okay. I know my fight isn't over, but I'm going to continue to beat the shit out of my opponent!
This has been anything but easy, but I know others have had it so much worse than me. While Chemo sucks, makes me exhausted for days, can't touch or drink anything cold for a week after, and other lovely side effects, like neuropathy in my hands and feet, it hasn't completely incapacitated me. I have been able to work most of the time with a few days here and there to rest. I think of my chemo as liquid gold because it has been working. My oncologists call me their "rock star of blood counts" because mine have never dropped low enough to have to skip chemo, which usually happens. I have made their clinical research look pretty darn good! According to them, my response to the trial drugs has been "phenomenal!" In addition to chemo, I have been working at visualization, meditation, changed my eating habits and am trying to eat a high omega-3 diet which my nutritionist believes helps stop tumor growth (no sugar, no dairy, no red meat except for grass-fed beef, tons of greens, etc.) Well, no sugar except for when I need some, anyway! I am also a firm believer in prayer, and I know the prayers of many have touched me. Whatever it is, something is working. Personally, I think cancer just didn't realize what a stubborn, hard-core bitch I am. I will NOT have it! So don't feel sorry for me...feel sorry for the cancer that dared to mess with me...play taps for it, as a matter of fact, because its days are numbered!
7 months ago I was given virtually no hope. Now, my tumor is about a third of the size it was, is no longer on the artery, and in a couple of months will be blasted to smithereens by some high-tech machine I can't even begin to understand. I thank God everyday for Mass General, they are amazing and have truly saved my life.
Well, that's my story up until now. It has been an unbelievably hard 7 months, but I am trying to take some positive from it. The number of amazing people I have in my life humbles me every day. That is a whole other blog...I think the next entry will be all about what having cancer has taught me. Stay tuned!
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