There’s a conversation I keep having a lot here lately. It goes something like this:
Me: How are you doing?
Friend: Well, to be honest, not too well. I lost my job, my spouse left me, my dog died, I have a bad case of the clap and I’m going blind. But, I mean, I know it’s nothing like what you’ve been through.
Me: I don’t know, that sounds pretty awful.
Okay, so maybe that’s not exactly the conversation word for word. The thing is, whenever anybody starts telling me about a situation they have had to deal with, whether it’s bad health, financial woes, family problems, or whatever, they almost always follow it up with a disclaimer of how their problems are in no way a comparison to my own battle with cancer. And I honestly don’t know how to respond to that. First of all, I never assume they are making a comparison to begin with. What sort of jackass would do that? But secondly, having cancer doesn’t mean I’m the only person allowed to have problems.
I assure you, nobody is more aware of just how terrible this past year has been for me more than I am. I’m the one who had to go through it. But at no point do I recall ever thinking I have it worse than anyone else on the planet. If anything, I have gained a deeper appreciation for how lucky I have often been. Just last night I was sitting by a campfire talking with a friend about the past year. He said to me that when he has bad days and feels himself getting irritated over life’s unfairness, he thinks of me and it helps him put his trials into perspective. I told him that I do the same thing. There have been many times when I lost myself in self-pity and had to stop and remind myself there are those people who have suffered much more greatly than I have. Over the last year I have met some incredible people and have listened to some truly heart wrenching stories. No matter who you are, there will always be someone who has it better than you. And there is always someone who has it much worse. Each new day that we wake up gives us an opportunity to try to overcome obstacles, improve our situation, and prepare for new challenges. Nobody is immune to difficulties in life. Sometimes the hardest part is remembering that nothing lasts forever, and whatever struggle you are currently facing will eventually be but a brief moment of your past.
I wouldn’t want to be someone who had never experienced hard times. Every rough patch I’ve endured in life has made me a stronger person, and has made me more empathetic to other people’s dilemmas. Quite frankly, I fully believe that a lack of empathy is the root of most of the world’s problems. Without it, it becomes easy to quickly judge a person’s situation without fully understanding it. Not to be confused with sympathy, empathy allows us to appreciate our unique differences and value our sameness; to understand how close we all are to walking in someone else's shoes, had the hands of fate varied even ever so slightly. Perspective. It changes with time and circumstance.
So please, do me a favor and drop the disclaimer. I am still the same person fundamentally as I was over a year ago, only with a new and different perspective. But if I loved you before, I still love you now. I still care about your happiness, and am sympathetic to your problems. Yes, you are allowed to have them too. You do not have to justify your troubles and you do not have to apologize for the need to occasionally talk about them. You’re allowed to vent every now and then - even to someone you think has it worse than you.
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Monday, October 19, 2015
Monday, October 12, 2015
The Evolution of My Ass Part 6
Well, I made it through the surgery. Since April 2014, I had lost my corporate job, became increasingly more and more sick, dealt with excruciating pain, radiation, oral chemo, two bouts of c-diff, a total APR (abdominoperineal resection {removal of tumor and portions of my buttocks and a couple abdominal muscles just for kicks}), colostomy surgery, a complete hysterectomy, a second surgery to fix a bowel obstruction, and more tests, exams, needles, and labs than I can even count. But I wasn’t done yet. The first month or so after surgery was spent at home in recovery. After a three week long hospital stay, being at home, in my own bed, was pure heaven.
Next on the “to do” list was to prepare for chemotherapy. I have decent looking veins, but as soon as they see a needle, they become very persnickety and try to run away. They roll like the tide. It was decided it would be best for me (and future medical personnel) that I have a port installed. So, I headed in for yet another surgery. This one was very minor compared to others. I now have a power port located in my upper right chest, allowing access for IV drugs or when I need to have blood drawn. It doesn’t hurt, although if pressure is put against it, it does. I just hug more from the other side now.
After my port was installed, I began the next round of chemo. And oh heaven have mercy; it was PURE HELL. I don’t mean a little hell, I mean full on some of the worst misery imaginable. The type of chemo I had was called FolFox. It’s administered by starting an IV with anti-nausea meds, steroids, and some other stuff, then the chemo itself is given. The process takes a couple of hours. Then they give me a fanny pack with the chemo drugs inside, and and IV connected to my port. I would wear it home and for the next 48 hours get a continuous drip of poison. The first dose was merciless. I threw up for 24 hours straight. I lost about 8 pounds in three days. I ate nothing but a handful of saltine crackers and tried to drink enhanced water as much as I could. I was taking anti-nausea meds about every two hours.
The next round we adjusted my nausea medicine. I was still sick but didn’t throw up quite as much. All in all, I had 11 total treatments. I was scheduled for 12, but number 11 I thought would be the end of me. Even though the vomiting wasn’t as severe, the other wretched side effects were becoming worse and each treatment was harder than the previous one. I didn’t have one more in me. So I took my final chemo treatment (at least the hard stuff anyway) on August 25th.
During the midst of all this, I was scheduled for another CT and MRI. Thanks to the close eye of the radiologist, he noticed two tiny spots on my liver that had appeared to have changed/grown since the last CT I had. My oncology surgeon reviewed them and we decided the only way to know for sure was to have a liver biopsy. Now, let me say something about that. So, I go in for the biopsy in Memphis and meet with the nurse and the doctor who would be performing the biopsy. He seemed to think it was an easy procedure, they would go in and numb it and I might feel a little “pressure”. Ha! Hahahahahaha! So, what happens is you are put on a flat table, and you get sent in and out of a CT scan (in, out, in, out, in, out, repeat). In the CT they take an image that pops up on the doctor’s computer screen. I come out and he pokes me with a needle. Repeat, repeat, and repeat some more. The thing is, you are not allowed to take deep breaths, only very shallow breaths so as to not move anything in your body even slightly. He starts with the numbing needles. I feel each one, going in deeper and deeper and deeper. Then comes the needle that snips off a piece of liver to be biopsied. Holy shit. A little pressure, my ass. I start crying from the pain. The crying causes my breathing to become heavier. The doctor yells at me because it’s causing his needle to jerk around. I yell back. I hear the nurse mention my blood pressure in a concerned tone. I’m sure it was skyrocketing from the pain and now the whole “I can’t breathe and am about to hyperventilate” thing going on. The doctor instructs her to inject me with something, stat. She does. I immediately feel very, very relaxed and the pain has subsided. Now, why the hell didn’t they just give me this magic medicine BEFORE the procedure and this could all have been easily avoided? Note to medical staff - drugs are good. Always. And before the pain and panic sets in is preferable. But, I made it through. Bad news. It was indeed metastatic cancerous lesions in my liver. I was officially upgraded to stage 4. Previously it was thought I was only a stage 3, even though there were some concerning lymph nodes in my groin they removed in surgery “just in case". It’s amazing how the odds go waaaayyy down from stage 3 to stage 4. The five year survival rate for stage 4 colorectal cancer is around 12%. Now, granted some of those stats may be old, and each case is different. And so far, my cancer has not played by most of the rules anyway, so who knows. I have been told twice by my oncologist at the West Clinic that she doesn’t know just exactly what to do with me, and that I’m a difficult case. I told her this wasn’t the first time in life I’ve been told this.
See, here’s the thing. The spots on my liver didn’t look like cancer. Not to the radiologist, my surgeon or even to the doctor who performed my biopsy. Until the results came back they were convinced they had to be something else. They just didn’t look like your typical cancerous spots. And at my last PET scan, not a single thing in my body lit up. Nothing. Zilch.
My oncologist started me on Avastin. It’s different than chemo, in that it works to cut off the blood supply to the tumor, essentially starving it. It seems to be working. Since starting Avastin, my CEA levels have decreased over 80% and are close to the normal range. So, that’s all good. BUT, there’s always a BUT these days, during my last CT and MRI which was just a few weeks ago, something else showed up. The good news is that it appears that one of the spots on my liver has disappeared entirely and the other spot has shrank (or is it shrunk?) by over 50%. That’s good news. It means the Avastin has been doing a good job of what it’s supposed to do. Bad news, a couple of spots on my lungs have also shrank/shrunk. Wait, I didn’t tell you about those perhaps? Well, that’s because they weren’t supposed to be anything significant. Way back when this all first started and I was initially diagnosed they noticed a couple of tiny spots on my lungs, most likely some type of fungal something or other that most everyone that lives in certain areas get from time to time. However, it appears these spots have also decreased in size along with the spots on my liver. What does that mean? Well, most likely it means they were also cancerous. It means that damn tumor that they declared was very aggressive and quite unusual for someone at my age and my history, was in fact, exactly that - very aggressive. It means this tumor meant to kill me, and rather quickly. The only way to know for sure is to have another biopsy - this time on my lungs. Let me make this clear up front - I want drugs. Lots and lots of happy, happy, la, la, la drugs, before they ever even get close to me with a needle.
As of now, my surgeon is supposed to be presenting my case to the tumor board, and get the opinion and expertise from other members of the council on the best course of action henceforth. My oncologist has postponed any more treatments for the time being, until after the board meets. If I do have a biopsy, or possibly ablation to burn off the remaining lesions in my liver, then I need to be off the Avastin for a month at minimum due to risks of complications and bleeding that occur because of it.
So, here I am. Over a year later. Overall, I feel much better than I did a year ago, and am quite lucky and damn thankful to be alive. For now, I wait. I wait to see what my brilliant medical team determines is the next best step for me. In the meantime, I am trying to stay positive and focused on the present and plan optimistically for the future.
Next on the “to do” list was to prepare for chemotherapy. I have decent looking veins, but as soon as they see a needle, they become very persnickety and try to run away. They roll like the tide. It was decided it would be best for me (and future medical personnel) that I have a port installed. So, I headed in for yet another surgery. This one was very minor compared to others. I now have a power port located in my upper right chest, allowing access for IV drugs or when I need to have blood drawn. It doesn’t hurt, although if pressure is put against it, it does. I just hug more from the other side now.
After my port was installed, I began the next round of chemo. And oh heaven have mercy; it was PURE HELL. I don’t mean a little hell, I mean full on some of the worst misery imaginable. The type of chemo I had was called FolFox. It’s administered by starting an IV with anti-nausea meds, steroids, and some other stuff, then the chemo itself is given. The process takes a couple of hours. Then they give me a fanny pack with the chemo drugs inside, and and IV connected to my port. I would wear it home and for the next 48 hours get a continuous drip of poison. The first dose was merciless. I threw up for 24 hours straight. I lost about 8 pounds in three days. I ate nothing but a handful of saltine crackers and tried to drink enhanced water as much as I could. I was taking anti-nausea meds about every two hours.
The next round we adjusted my nausea medicine. I was still sick but didn’t throw up quite as much. All in all, I had 11 total treatments. I was scheduled for 12, but number 11 I thought would be the end of me. Even though the vomiting wasn’t as severe, the other wretched side effects were becoming worse and each treatment was harder than the previous one. I didn’t have one more in me. So I took my final chemo treatment (at least the hard stuff anyway) on August 25th.
During the midst of all this, I was scheduled for another CT and MRI. Thanks to the close eye of the radiologist, he noticed two tiny spots on my liver that had appeared to have changed/grown since the last CT I had. My oncology surgeon reviewed them and we decided the only way to know for sure was to have a liver biopsy. Now, let me say something about that. So, I go in for the biopsy in Memphis and meet with the nurse and the doctor who would be performing the biopsy. He seemed to think it was an easy procedure, they would go in and numb it and I might feel a little “pressure”. Ha! Hahahahahaha! So, what happens is you are put on a flat table, and you get sent in and out of a CT scan (in, out, in, out, in, out, repeat). In the CT they take an image that pops up on the doctor’s computer screen. I come out and he pokes me with a needle. Repeat, repeat, and repeat some more. The thing is, you are not allowed to take deep breaths, only very shallow breaths so as to not move anything in your body even slightly. He starts with the numbing needles. I feel each one, going in deeper and deeper and deeper. Then comes the needle that snips off a piece of liver to be biopsied. Holy shit. A little pressure, my ass. I start crying from the pain. The crying causes my breathing to become heavier. The doctor yells at me because it’s causing his needle to jerk around. I yell back. I hear the nurse mention my blood pressure in a concerned tone. I’m sure it was skyrocketing from the pain and now the whole “I can’t breathe and am about to hyperventilate” thing going on. The doctor instructs her to inject me with something, stat. She does. I immediately feel very, very relaxed and the pain has subsided. Now, why the hell didn’t they just give me this magic medicine BEFORE the procedure and this could all have been easily avoided? Note to medical staff - drugs are good. Always. And before the pain and panic sets in is preferable. But, I made it through. Bad news. It was indeed metastatic cancerous lesions in my liver. I was officially upgraded to stage 4. Previously it was thought I was only a stage 3, even though there were some concerning lymph nodes in my groin they removed in surgery “just in case". It’s amazing how the odds go waaaayyy down from stage 3 to stage 4. The five year survival rate for stage 4 colorectal cancer is around 12%. Now, granted some of those stats may be old, and each case is different. And so far, my cancer has not played by most of the rules anyway, so who knows. I have been told twice by my oncologist at the West Clinic that she doesn’t know just exactly what to do with me, and that I’m a difficult case. I told her this wasn’t the first time in life I’ve been told this.
See, here’s the thing. The spots on my liver didn’t look like cancer. Not to the radiologist, my surgeon or even to the doctor who performed my biopsy. Until the results came back they were convinced they had to be something else. They just didn’t look like your typical cancerous spots. And at my last PET scan, not a single thing in my body lit up. Nothing. Zilch.
My oncologist started me on Avastin. It’s different than chemo, in that it works to cut off the blood supply to the tumor, essentially starving it. It seems to be working. Since starting Avastin, my CEA levels have decreased over 80% and are close to the normal range. So, that’s all good. BUT, there’s always a BUT these days, during my last CT and MRI which was just a few weeks ago, something else showed up. The good news is that it appears that one of the spots on my liver has disappeared entirely and the other spot has shrank (or is it shrunk?) by over 50%. That’s good news. It means the Avastin has been doing a good job of what it’s supposed to do. Bad news, a couple of spots on my lungs have also shrank/shrunk. Wait, I didn’t tell you about those perhaps? Well, that’s because they weren’t supposed to be anything significant. Way back when this all first started and I was initially diagnosed they noticed a couple of tiny spots on my lungs, most likely some type of fungal something or other that most everyone that lives in certain areas get from time to time. However, it appears these spots have also decreased in size along with the spots on my liver. What does that mean? Well, most likely it means they were also cancerous. It means that damn tumor that they declared was very aggressive and quite unusual for someone at my age and my history, was in fact, exactly that - very aggressive. It means this tumor meant to kill me, and rather quickly. The only way to know for sure is to have another biopsy - this time on my lungs. Let me make this clear up front - I want drugs. Lots and lots of happy, happy, la, la, la drugs, before they ever even get close to me with a needle.
As of now, my surgeon is supposed to be presenting my case to the tumor board, and get the opinion and expertise from other members of the council on the best course of action henceforth. My oncologist has postponed any more treatments for the time being, until after the board meets. If I do have a biopsy, or possibly ablation to burn off the remaining lesions in my liver, then I need to be off the Avastin for a month at minimum due to risks of complications and bleeding that occur because of it.
So, here I am. Over a year later. Overall, I feel much better than I did a year ago, and am quite lucky and damn thankful to be alive. For now, I wait. I wait to see what my brilliant medical team determines is the next best step for me. In the meantime, I am trying to stay positive and focused on the present and plan optimistically for the future.
Monday, October 5, 2015
Be careful what you wish for
The following is a true story.
In the year previous to my cancer diagnosis, I was sitting at a bar having a few beers with a friend of mine. Earlier that day somebody had posted a comment on Facebook about how breast cancer got all of the attention when it came to various cancers. I brought this topic up while sipping on a cold brew that evening. Basically what I said, can be summarized like this: “I agree completely. Quite frankly, I’m glad that everyone wearing pink has possibly raised awareness for breast cancer, but there are so many other cancers out there that have higher mortality rates with much less recognition and it’s time people started showing support for those cancers too. I know, how about an ass cancer campaign? We should start one of those!” Then we spent a few minutes coming up with catchy phrases we could use as part of our Save Dat Ass campaign.
That conversation has haunted me more than once, and my friend as well. Not long after my diagnosis of colorectal cancer, he came up to me one night at that same bar, hugged me, and said, “Child, you don’t think we jinxed you, do you?” I have no idea. Perhaps we did. Maybe God heard me talking and thought to himself, “Well, now, Jennifer, I think that’s a great idea. I will even let you be the poster child for “ass cancer” if you wish.” Or maybe somewhere deep in my subconscious my mind already knew what was coming. I mean, even then, if I look back with 20/20 hindsight, I can see little telltale signs of early symptoms even that far back, but at the time they were so insignificant I didn’t give them much thought.
However it came about, I got my wish. I did start an ass cancer campaign - just not exactly how I had envisioned. Ever heard the old saying, “Be careful what you wish for”? Yeah, me too. But I am glad something positive has come from all of this. Because in a way, I have started a new campaign. And there are people who now know more about colon cancer and some of the signs and symptoms because of me. I am also a testament to the fact that you are never too young. And that yes, it can happen to you. It’s about time, we, as a people, started talking about such things instead of acting like it’s taboo to discuss problems going on down south. Too many people wait far too long to seek help because they are embarrassed to talk about their symptoms.
I realize the Susan G. Komen foundation has taken some heat lately. I stopped supporting that particular charity years ago, for many of the reasons that are being talked about on the news currently. Overall, they haven’t had a good rating among charities, especially when it comes to donations coming in vs. money spent on actual cancer research and funding. I like to know when it comes to donations that my money is being used for the cause I am supporting. And while it’s great that so many people wear pink, it’s also sad that there are so few who wear other colors, or that cancers like pancreatic, colorectal, prostate, ovarian, or many others are not being talked about or given the same spotlight. They are all deadly. And while maybe some men (and some women) are fascinated with breasts, they are not essential, other than providing nourishment to newborn babies, to our lives. You CAN live without breasts. You CANNOT live without a colon. And no, this is most certainly not a post meant to diminish the devastating effects or seriousness of breast cancer. I have lost loved ones to that horrible disease. The point is, there are other, just as deadly (and more so in many cases), types of cancer that need the same attention. But for heaven’s sake, just don’t say you would like to start a campaign for any of them!!!!
And, because of this blog, several people have reached out to me, in private messages or phone calls, asking for my help, or thoughts on treatment options, or how to cope with chemo, or sometimes just because they know I will listen to them when they need an ear. And I will. I will gladly do what I can to help any of you. Please know that. And if I don’t know the answer to a question, I will do my best to find it or point you in the direction of someone else who may know. I still want to start an “Ass Cancer” campaign. I hate that I had to do it this way, but maybe this was the best way. Maybe it was the only way. Maybe God isn’t finished with me yet. I like to think not. I like to think that there will be a silver lining in this cloud, and that my suffering has not been in vain. I am certainly no saint, nor do I even try to be, but I do hope that I have something positive to contribute to this world before I leave it. Save dat ass, people.
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