It is often during the most challenging times that something happens to remind you that there is hope and strength when you need it. Such a time presented itself to me this week when I was sitting in the infusion room after a long 3 hour wait to to get there. The scheduling and pager system had been on the fritz at Fox Chase all day and by noon, the wait to get a chair was over three hours. My appointment was 12:15. I got in at 3:30. Super fun. While it was annoying to have to wait, my dad takes me to treatment, so I had someone to talk to and I didn't mind so much. Time passed. I would've rather been anywhere else, almost, but at least I felt OK and was in good enough spirits to enjoy a conversation with someone. It has not always been that way during treatment.
Much to my surprise, about 30 minutes in the chair, a doctor came over to me with a big, gift-wrapped bag labeled "Lisa's Army." Having not heard of this before, I saw the bag and said, "Uh-oh, what did I do?" In jest, of course. All in jest. Dr. Jain, the doctor standing before me, explained that I had been nominated by my doctor, Dr. Dotan, to receive a comfort kit from Lisa's Army (lisasarmy.org), which is an organization founded by the family of Lisa Loonstyn-Golden, who passed away at 24 from ovarian cancer, to bring comfort and care to patients fighting cancer. The honor of receiving such a gift was overwhelming. To be nominated by my amazing doctor in itself is a gift. The bag contained all the comfort items you could want - a blanket, hat, tissues, nausea pops, chap stick, lotion, etc. - clearly Lisa understood chemo. But it also contained an iPad. An iPad. So that three hours wait? Boy don't I feel silly now. It all comes around, doesn't it? Consider me one of Lisa's Army now. What an amazing gift to get.
As for the cancer front, here is what's new:
Last week I had a CT and while the news wasn't bad, it wasn't everything I was hoping for either, although I could sense that going in. No obvious progression. The mets on the spine have been stable since October, which is good, and there is no new tumor growth. However, the surgery wasn't a screaming success. My lungs have three pockets of fluid in them, two which seem to be growing from either side of me where the chest tube incisions were made. These balloon-type pockets (think of a long balloon, not a round one), are sitting right, smack in the middle of my lungs. One in each lung. The one in the left lung is right behind my heart, causing extra issues with breathing. Not what I wanted as an outcome. Less overall fluid, but in the worst possible spot, so the side effects are worse. I'm not being tapped anymore on a weekly basis, but I also cannot walk up a flight of 6 stairs without getting very winded.
So the plan is this - one more treatment (that was Monday) this month and then, at my next appointment with Dr. Dotan, we assess the lungs. If the lungs are even slightly better, we continue with this treatment. If they are not, and I honestly don't think they will be since I've been on this for a while with continued fluid build up, we get me signed up for a clinical trial we've had waiting. Dr. Dotan and I both feel that if the treatment now was truly working, the fluid in the lungs wouldn't have built back up after surgery. I've had three treatments since surgery and we should've seen a difference by now. But we'll assess again on New Years Eve day. Happy New Year! On the bright side, we now have this new drug I mentioned last time from Eli Lilly for gastric cancer that is a standard therapy. If the clinical trial doesn't work for me, we have that in our pockets. Always something down the road. That's the goal. Keep it chronic. A little less annoying would be nice, though. Not gonna lie.
So that's it for me. Have a wonderful, beautiful, precious holiday season with yours and remember what this time of year is all about. (Hint: it's not presents!)
xo,
Lisa
Wednesday, December 10, 2014
Tuesday, November 11, 2014
Bring on the festivities!
So I realize I say this a lot these days, but wow, has it been a while! I thought I would have an update sooner for you but the month of October was pretty much one I'd like to just glaze over. Actually, between the surgery and the drugs, I pretty much did!
The Delaney trio went to Disney and Universal Studios the last week in September and, while it was a good vacation, it was hard for me. The cancer wasn't a problem, but the lymphedema proved challenging this time around. My feet took a beating and so walking around became difficult. All in all a good time, but the last one for a while. The next vacation will involve a lot of sitting. Preferably on the beach. Sean and Kat can figure out something else to do while I tan it up.
Our return from vacation marked a month of trials for me. The day after we got back I went in to Fox Chase for a biopsy of my spine, then two days later I had treatment, then three days after that I went in for a lung surgery called pleurodesis. The surgery involves inserting a chest tube, in my case in both pleura (the lining surrounding the lungs), and then draining the fluid in there and inserting a talc powder to irritate the pleura lining so they adhere. The chest tubes are left in for 48 hours to make sure all fluid is drained, and then you're sent home with a lot of drugs. If successful, the pleura seals so that no fluid ever builds up again. There is no downside, other than it being a major surgery, in sealing the pleura. The fluid doesn't go anywhere else. It just doesn't develop. I'm sure there is some limit to the lung capacity after the fact, but it is so minimal that, in people who choose the procedure for valid reasons, it isn't even noticeable. So my surgery was mostly successful as far as the lungs go. The left pleura seems to have completely sealed. The right pleura has two pockets of fluid that don't seem to be sealing completely. The amount of fluid in there is minimal compared to the two liters a week I was having drained prior to surgery, but it's frustrating having it there at all. At some point it may need to be drained, but then, it may not. Hard to tell.
The biggest problem from surgery was that my breathing was getting worse, not better, as I came home to recover. Long story short, after two follow ups with the pulmonary oncologist, it was found that I had fluid around my heart caused by, we believe, inflammation from a reaction to the talc. So here's the kicker - the surgery is supposed to induce inflammation so the pleura linings adhere, and treating the heart with steroids or NSAIDs would reduce that inflammation, so I went 4 weeks with this trouble before my doc, my own oncologist, called me and said, "Enough is enough, I'm calling in a steroid." I love her. It had been 4 weeks and if the surgery hadn't worked by then, chances are it wasn't going to. Too much fluid had built up in the pleura at that point for it to seal. I don't think the pulmonary doc was thrilled, but I didn't care. I couldn't walk up a flight of stairs. I couldn't pick Katherine up from the bus stop. I couldn't walk 50 feet without needing a break. After one dose of the steroid, I was able to walk around with Kat on Halloween and go trick-or-treating. After the weekend, I was walking up the 3 flights of stairs from my living room to my bedroom without needing to stop. It has been a week and a half and, while I'm still short of breath and can feel the pain around my heart indicating there is still fluid there, it is so much better than it was before. I have another week and a half on the steroid and I'm hoping the treatment I have scheduled this Friday doesn't make the fluid worse, as it did in October when I had my last treatment. If the steroid doesn't take care of the fluid completely, I either live with it (as long as it's not putting pressure on my heart) or I go in to get it drained, which is not a fun thing. I don't want another hospital visit. I don't want another incision and I don't want someone sticking a catheter into the lining of my heart. I don't care how much experience they have doing it.
So now that I'm doing much better, we're back on the treatment track, although a modified schedule both so I can continue to recover and make it through the holidays while enjoying myself. I have treatment Friday and then not again until the first week of December, when I'll also have my next CT. At that point we can determine if this treatment is really working and make a plan from there. My biopsy results on the spine showed nothing new, and the point of them, which was to get biological testing through Memorial Sloan-Kettering, proved invalid. Turns out they can't do biological testing on bone. Sigh. We're still waiting on the results to see if the bone mets are HER2 +. If so, I would go back on Herceptin in addition to the chemo I'm on now, and potentially tackle everything at once. I'm almost hoping for it, since it will give me an actual treatment option that will cover everything going on with the cancer. It would explain why the bone mets grew as the skin lesions regressed. As I recover from the surgery, the frustration of the cancer itself grows, as I still feel like it's a chronic condition rather than a death sentence, being able to go and live life fairly normally. Having said that, this is potentially my last treatment option before we start grasping at straws, so let's hope it's working.
So because Memorial has nothing for me and Penn doesn't seem to have anything for me, we're expanding our options. I'm going to reach out to Johns Hopkins to get on their radar, and I'm in the process of sending everything to the National Cancer Institute (NCI), who handles many of the clinical trials in the country. Both are based in MD, so not too far if I get into a trial or treatment plan there, and really, where is too far when you're talking about life? So between the holidays and getting in to those centers, it'll be a busy couple of months.
Two things came up over the past month or so to keep an eye on, though. One is the FDA approval of the Eli Lilly drug, Cyramza, which is the first FDA approved drug for gastric cancer in AGES and the first approved treatment of it's kind (second line), ever. The second is the Merck trial results for their immunotherapy drug, Keytruda, showed promise in gastric cancer patients so much that they are moving ahead to Phase II in early 2015. Now I don't qualify for Phase II trials since my cancer is not specific, but that doesn't mean this drug won't show so much promise that it'll be standard in another year, and that's the goal, right? More treatment options. These are two more potential options we didn't have 6 months ago, and that's good. Stomach cancer is not as prevalent in the US as in Europe and, especially Asia, but it is the fifth most common cancer in the world and the third-leading cause of cancer death. Like pancreatic cancer, gastric cancer is most often not found until it has spread, which is why it is so deadly. We need treatment options for metastatic cancer, and these two options show promise. Fingers crossed.
I think that's it for now. Have a fantastic holiday season and I'll update when something new comes along.
xo,
Lisa
The Delaney trio went to Disney and Universal Studios the last week in September and, while it was a good vacation, it was hard for me. The cancer wasn't a problem, but the lymphedema proved challenging this time around. My feet took a beating and so walking around became difficult. All in all a good time, but the last one for a while. The next vacation will involve a lot of sitting. Preferably on the beach. Sean and Kat can figure out something else to do while I tan it up.
Our return from vacation marked a month of trials for me. The day after we got back I went in to Fox Chase for a biopsy of my spine, then two days later I had treatment, then three days after that I went in for a lung surgery called pleurodesis. The surgery involves inserting a chest tube, in my case in both pleura (the lining surrounding the lungs), and then draining the fluid in there and inserting a talc powder to irritate the pleura lining so they adhere. The chest tubes are left in for 48 hours to make sure all fluid is drained, and then you're sent home with a lot of drugs. If successful, the pleura seals so that no fluid ever builds up again. There is no downside, other than it being a major surgery, in sealing the pleura. The fluid doesn't go anywhere else. It just doesn't develop. I'm sure there is some limit to the lung capacity after the fact, but it is so minimal that, in people who choose the procedure for valid reasons, it isn't even noticeable. So my surgery was mostly successful as far as the lungs go. The left pleura seems to have completely sealed. The right pleura has two pockets of fluid that don't seem to be sealing completely. The amount of fluid in there is minimal compared to the two liters a week I was having drained prior to surgery, but it's frustrating having it there at all. At some point it may need to be drained, but then, it may not. Hard to tell.
The biggest problem from surgery was that my breathing was getting worse, not better, as I came home to recover. Long story short, after two follow ups with the pulmonary oncologist, it was found that I had fluid around my heart caused by, we believe, inflammation from a reaction to the talc. So here's the kicker - the surgery is supposed to induce inflammation so the pleura linings adhere, and treating the heart with steroids or NSAIDs would reduce that inflammation, so I went 4 weeks with this trouble before my doc, my own oncologist, called me and said, "Enough is enough, I'm calling in a steroid." I love her. It had been 4 weeks and if the surgery hadn't worked by then, chances are it wasn't going to. Too much fluid had built up in the pleura at that point for it to seal. I don't think the pulmonary doc was thrilled, but I didn't care. I couldn't walk up a flight of stairs. I couldn't pick Katherine up from the bus stop. I couldn't walk 50 feet without needing a break. After one dose of the steroid, I was able to walk around with Kat on Halloween and go trick-or-treating. After the weekend, I was walking up the 3 flights of stairs from my living room to my bedroom without needing to stop. It has been a week and a half and, while I'm still short of breath and can feel the pain around my heart indicating there is still fluid there, it is so much better than it was before. I have another week and a half on the steroid and I'm hoping the treatment I have scheduled this Friday doesn't make the fluid worse, as it did in October when I had my last treatment. If the steroid doesn't take care of the fluid completely, I either live with it (as long as it's not putting pressure on my heart) or I go in to get it drained, which is not a fun thing. I don't want another hospital visit. I don't want another incision and I don't want someone sticking a catheter into the lining of my heart. I don't care how much experience they have doing it.
So now that I'm doing much better, we're back on the treatment track, although a modified schedule both so I can continue to recover and make it through the holidays while enjoying myself. I have treatment Friday and then not again until the first week of December, when I'll also have my next CT. At that point we can determine if this treatment is really working and make a plan from there. My biopsy results on the spine showed nothing new, and the point of them, which was to get biological testing through Memorial Sloan-Kettering, proved invalid. Turns out they can't do biological testing on bone. Sigh. We're still waiting on the results to see if the bone mets are HER2 +. If so, I would go back on Herceptin in addition to the chemo I'm on now, and potentially tackle everything at once. I'm almost hoping for it, since it will give me an actual treatment option that will cover everything going on with the cancer. It would explain why the bone mets grew as the skin lesions regressed. As I recover from the surgery, the frustration of the cancer itself grows, as I still feel like it's a chronic condition rather than a death sentence, being able to go and live life fairly normally. Having said that, this is potentially my last treatment option before we start grasping at straws, so let's hope it's working.
So because Memorial has nothing for me and Penn doesn't seem to have anything for me, we're expanding our options. I'm going to reach out to Johns Hopkins to get on their radar, and I'm in the process of sending everything to the National Cancer Institute (NCI), who handles many of the clinical trials in the country. Both are based in MD, so not too far if I get into a trial or treatment plan there, and really, where is too far when you're talking about life? So between the holidays and getting in to those centers, it'll be a busy couple of months.
Two things came up over the past month or so to keep an eye on, though. One is the FDA approval of the Eli Lilly drug, Cyramza, which is the first FDA approved drug for gastric cancer in AGES and the first approved treatment of it's kind (second line), ever. The second is the Merck trial results for their immunotherapy drug, Keytruda, showed promise in gastric cancer patients so much that they are moving ahead to Phase II in early 2015. Now I don't qualify for Phase II trials since my cancer is not specific, but that doesn't mean this drug won't show so much promise that it'll be standard in another year, and that's the goal, right? More treatment options. These are two more potential options we didn't have 6 months ago, and that's good. Stomach cancer is not as prevalent in the US as in Europe and, especially Asia, but it is the fifth most common cancer in the world and the third-leading cause of cancer death. Like pancreatic cancer, gastric cancer is most often not found until it has spread, which is why it is so deadly. We need treatment options for metastatic cancer, and these two options show promise. Fingers crossed.
I think that's it for now. Have a fantastic holiday season and I'll update when something new comes along.
xo,
Lisa
Thursday, September 11, 2014
Back in the fight
So I was debating on waiting to share this information until I had the full picture, but I decided to let you know what I know and then update you as I find out more. I saw my doc yesterday for the results of my latest CT and the news kind of sucks, to be honest. I now have several lesions on my spine. And by several I mean, like, at least 5 or so. I had one for a long time that showed resolved a few months ago. My doc showed me side by side of my June scan with this latest, and it's clear. They weren't there in June that we could see. Now I'll share with you what we discussed.
My doc told me that bone mets (that's what we in the know call metastases, or cancer that has spread from the original site, which is pretty much ALL of my cancer, you know, having no idea where it came from and all) are hard to gauge because sometimes it takes a bit to spot them on a scan. She said they may have been there for months, but we just now see them on the scan. So there is a possibility that they were there before I went on my current treatment, which was end of June. She also said bone mets can grow and stay for a long time, or they can grow and grow. We'll just have to wait and see.
We discussed next steps, including a clinical trial that I've now been approved for at Fox Chase. My doc got me approved before even letting me know about it, because she's awesome that way. On Monday, I found out from my doc at Penn that I would not qualify for the immunotherapy trial there, and was basically told it would be hard to get into any trial having an unknown primary. So Monday was not a good day. It's not easy hearing that, because they can't figure out where your cancer originated, you're pretty much going to be left out of possible life saving treatment. So while Wednesday did not bring good news, it did bring hope, which is what every cancer fighter needs to thrive. The clinical trial I've been approved for is a Phase I trial determining the safety of a hedgehog pathway blocker. Yes, hedgehog. Seriously. They can't come up with a better name? Hedgehog. Anyhoo, I did some research and it turns out this type of treatment has shown to be quite successful in certain cancers, such as basal cell carcinomas, but not very successful in most. Very few side effects, though, so there's that.
My other option is to stay on my current treatment since, from visual clues, it seems to be working. The rash on my torso is almost completely gone and my lymphedema in my legs seems to be going down ever so slightly. I'm now able to wear lower compression thigh high stockings on most days instead of highest compression full stockings, which is awesome. On days with a lot of walking, I'll need to wear my custom stockings, but it's nice not to feel like a pig in a blanket once in a while, especially since the full stockings push the fluid up to my abdomen and then I just feel horribly bloated and fat, not to mention uncomfortable. And funny looking, being the upper abdomen is all flabby and bloated and the lower abdomen is all flat. Stupid lymphedema.
So I chose plan B. I'm going to stay on my current treatment for another 2 rounds and then have another scan to see if things have changed. (BTW, these mets were the only issue on the scan, other than the effusions in my lungs, which we already knew, obviously.) In a few weeks, after vacation, I will have a biopsy done on the bone to see if we can get a good sample for further genetic testing. Hopefully there will be enough tissue from this biopsy that they can get a good sample and find out if there are any genetic mutations in the cancer. If so, that potentially opens up more clinical trials to me that are based on mutation instead of cancer type. So fingers crossed for that. Before agreeing to it (which I would have done anyway, to be honest), I asked my doc if it would hurt to get the bone biopsy, because I've heard they are incredibly painful, and she didn't answer right away. Of course, being the ridiculous Disney fan I am, my response was, "You hesitated." (If you don't know what movie that came from, you either don't have kids or you don't pay attention. Or both.) She laughed and said she didn't know because she'd never had one, but she thought they gave you not just a local anesthesia, but a twilight one as well, so I'm all like, "Done! Sign me up!" I'm a huge fan of twilight anesthesia, especially if it's Propofol, since you get the best rest while you're under. I know, it's the little things.
So that's how my Wednesday was. It's not the greatest news, but here's the thing, while I would prefer the cancer didn't spread at all, the fact that we have a chance for further testing gives me hope. The last time I had genetic testing done was over 2 years ago. A lot has changed in 2 years. My doc even uses a different company for testing now than she did 2 years ago, so that alone could show different results. Cancers also change over time, so we could find something different about it now that will allow us to treat it in a manner that would not have worked 2 years ago. Also, the cancer was already in my bone, so it's not a new spot. Just new lesions in the same place. I've said it all along, the goal is to keep it out of my organs. So far, that has been the case. I told my doc the plan has always been to keep going until they find better treatment. I've held up my end of the bargain, so now it's her turn. As she said, my disease has a survival rate of 6 months. Over 2 years later, I'm still thriving, and I have no intention of stopping.
So no negativity or sadness in any comments you may leave! I don't want to hear it! Just good thoughts and prayers and juju and anything else you want to throw at me!! And remember to take care of yourselves, have fun, enjoy life, and increase the amount of love in your lives. It's so short and so fragile, you don't want to regret anything.
xo, Lisa
Side note - We are going on vacation in a bit to Florida and I know some of you live in the area and were hoping to get together at some point. I'm going to be a party pooper a bit and make this vacation completely about the three of us. We're not there long and we have a lot planned between Disney and Universal and I want to make this vacation just for us without worrying about meet times or schedules. I hope you all understand. I'll catch you next time!!
My doc told me that bone mets (that's what we in the know call metastases, or cancer that has spread from the original site, which is pretty much ALL of my cancer, you know, having no idea where it came from and all) are hard to gauge because sometimes it takes a bit to spot them on a scan. She said they may have been there for months, but we just now see them on the scan. So there is a possibility that they were there before I went on my current treatment, which was end of June. She also said bone mets can grow and stay for a long time, or they can grow and grow. We'll just have to wait and see.
We discussed next steps, including a clinical trial that I've now been approved for at Fox Chase. My doc got me approved before even letting me know about it, because she's awesome that way. On Monday, I found out from my doc at Penn that I would not qualify for the immunotherapy trial there, and was basically told it would be hard to get into any trial having an unknown primary. So Monday was not a good day. It's not easy hearing that, because they can't figure out where your cancer originated, you're pretty much going to be left out of possible life saving treatment. So while Wednesday did not bring good news, it did bring hope, which is what every cancer fighter needs to thrive. The clinical trial I've been approved for is a Phase I trial determining the safety of a hedgehog pathway blocker. Yes, hedgehog. Seriously. They can't come up with a better name? Hedgehog. Anyhoo, I did some research and it turns out this type of treatment has shown to be quite successful in certain cancers, such as basal cell carcinomas, but not very successful in most. Very few side effects, though, so there's that.
My other option is to stay on my current treatment since, from visual clues, it seems to be working. The rash on my torso is almost completely gone and my lymphedema in my legs seems to be going down ever so slightly. I'm now able to wear lower compression thigh high stockings on most days instead of highest compression full stockings, which is awesome. On days with a lot of walking, I'll need to wear my custom stockings, but it's nice not to feel like a pig in a blanket once in a while, especially since the full stockings push the fluid up to my abdomen and then I just feel horribly bloated and fat, not to mention uncomfortable. And funny looking, being the upper abdomen is all flabby and bloated and the lower abdomen is all flat. Stupid lymphedema.
So I chose plan B. I'm going to stay on my current treatment for another 2 rounds and then have another scan to see if things have changed. (BTW, these mets were the only issue on the scan, other than the effusions in my lungs, which we already knew, obviously.) In a few weeks, after vacation, I will have a biopsy done on the bone to see if we can get a good sample for further genetic testing. Hopefully there will be enough tissue from this biopsy that they can get a good sample and find out if there are any genetic mutations in the cancer. If so, that potentially opens up more clinical trials to me that are based on mutation instead of cancer type. So fingers crossed for that. Before agreeing to it (which I would have done anyway, to be honest), I asked my doc if it would hurt to get the bone biopsy, because I've heard they are incredibly painful, and she didn't answer right away. Of course, being the ridiculous Disney fan I am, my response was, "You hesitated." (If you don't know what movie that came from, you either don't have kids or you don't pay attention. Or both.) She laughed and said she didn't know because she'd never had one, but she thought they gave you not just a local anesthesia, but a twilight one as well, so I'm all like, "Done! Sign me up!" I'm a huge fan of twilight anesthesia, especially if it's Propofol, since you get the best rest while you're under. I know, it's the little things.
So that's how my Wednesday was. It's not the greatest news, but here's the thing, while I would prefer the cancer didn't spread at all, the fact that we have a chance for further testing gives me hope. The last time I had genetic testing done was over 2 years ago. A lot has changed in 2 years. My doc even uses a different company for testing now than she did 2 years ago, so that alone could show different results. Cancers also change over time, so we could find something different about it now that will allow us to treat it in a manner that would not have worked 2 years ago. Also, the cancer was already in my bone, so it's not a new spot. Just new lesions in the same place. I've said it all along, the goal is to keep it out of my organs. So far, that has been the case. I told my doc the plan has always been to keep going until they find better treatment. I've held up my end of the bargain, so now it's her turn. As she said, my disease has a survival rate of 6 months. Over 2 years later, I'm still thriving, and I have no intention of stopping.
So no negativity or sadness in any comments you may leave! I don't want to hear it! Just good thoughts and prayers and juju and anything else you want to throw at me!! And remember to take care of yourselves, have fun, enjoy life, and increase the amount of love in your lives. It's so short and so fragile, you don't want to regret anything.
xo, Lisa
Side note - We are going on vacation in a bit to Florida and I know some of you live in the area and were hoping to get together at some point. I'm going to be a party pooper a bit and make this vacation completely about the three of us. We're not there long and we have a lot planned between Disney and Universal and I want to make this vacation just for us without worrying about meet times or schedules. I hope you all understand. I'll catch you next time!!
Thursday, August 28, 2014
"A couple right hooks, a few left jabs...."
Wow, has it really been two months since I last wrote here? Time flies! My lack of writing usually means I either am too busy to write or I don't have much to write about. Neither is necessarily good nor bad, but I do appreciate the ongoing support I have been getting from all of you in spite of my silence. You've been with me this entire time and you're in for a well deserved update!
In early July I went back out on disability. The treatment I'm on is every two weeks and it just got to be too much for me to continue to work while going through it. I miss work. I like the company I work for and the people I work with, not to mention being a contributing member of society, and it was really hard making the decision to go out. Right now my leave is indefinite, and I truly have no idea when I will be able to return, if I will be able to return. My good weeks are ok now, but I don't have as many good days as I used to, and it's entirely because of this treatment schedule and the pleural effusions. So until we get things under control, my leave is indefinite. The treatment seems to be working slowly though, so fingers crossed!!
The pleural effusions (bilateral) continue. I am at Fox Chase at least once a week now getting a thoracentesis on either the left or right lung. (That's a tap, for those wondering. You get good at medical terms when you're at the docs all the time!) The fluid doesn't seem to be accumulating as quickly now, but I did have a liter drained from my right lung on Monday after having it done just a week prior. It has been 3 weeks since the left lung was drained and that's great news because it means it's not accumulating as quickly. My right side has always been the bad side though, for some reason, with everything. I have a thora scheduled for Friday for the left side after treatment. I am getting tired of them. They are painful. First they put a needle in to numb the skin and surface tissue. Then they go deeper and numb the lining of the lung. That one takes your breath away. Once the doc didn't wait long enough for the numbing to occur, or she didn't get enough in there, and I felt the catheter go into my lung. Let me tell you, I've been through childbirth, both the pain of pushing with a little head peeking out, and the pain of a C-section without enough sedative, and I never cried from pain of a medical procedure until that moment. There are so many nerves in your lungs and it was so painful, I actually make sure to tell them every time I go in now what happened and to take it slow. They've been good since, thank God. I'm still done with it. I have an appointment in a few weeks with a thoracic surgeon to talk about next steps. I'm still up in the air on when and if I will get further treatment, but I need to have the consult so I'm ready when the time comes.
One last piece of medical info before I move on. There is a clinical trial at Penn that I'm interested in and have asked my doc about. It's an immunotherapy trial. I have always been a strong believer that immunotherapy is the right treatment for me and I could be full of crap (you know, with my obvious medical and bio-science experience), but when the cancer loves your immune system, it seems only logical that if you reprogram your immune system to fight the cancer, it is your best chance for remission. My doc at Fox Chase agrees this is a good trial for me and told me to contact my doc at Penn, which I have. It often takes a while to get all things dotted and crossed for a clinical trial, so once I know more, I'll let you know, but it may be a while. I may not qualify, but I'm hoping to God I do, and all juju my way on this one would be greatly appreciated.
So the title of this post is from my theme song during this fight, by Gym Class Heroes. There are so many things about this song that I relate to, even though it's not at all about fighting a disease. When I am down and feeling like I just can't do it, that song brings me back to my fighting weight.
"And if I can last thirty rounds
There's no reason you should ever have your head down"
Everyone has their own issues, and everyone needs to complain about things that ultimately don't matter in the end, but when I feel like I am complaining about things too much, or I hear people harping on about things that just don't matter, this is what I think of.
"It's gonna take a couple right hooks a few left jabs
for you to recognize you really ain't got it bad"
And it brings me back to center.
"If you fall pick yourself up off the floor
And when your bones can't take no more
Just remember what you're here for."
Happy 6th birthday, baby girl.
xo, Lisa
In early July I went back out on disability. The treatment I'm on is every two weeks and it just got to be too much for me to continue to work while going through it. I miss work. I like the company I work for and the people I work with, not to mention being a contributing member of society, and it was really hard making the decision to go out. Right now my leave is indefinite, and I truly have no idea when I will be able to return, if I will be able to return. My good weeks are ok now, but I don't have as many good days as I used to, and it's entirely because of this treatment schedule and the pleural effusions. So until we get things under control, my leave is indefinite. The treatment seems to be working slowly though, so fingers crossed!!
The pleural effusions (bilateral) continue. I am at Fox Chase at least once a week now getting a thoracentesis on either the left or right lung. (That's a tap, for those wondering. You get good at medical terms when you're at the docs all the time!) The fluid doesn't seem to be accumulating as quickly now, but I did have a liter drained from my right lung on Monday after having it done just a week prior. It has been 3 weeks since the left lung was drained and that's great news because it means it's not accumulating as quickly. My right side has always been the bad side though, for some reason, with everything. I have a thora scheduled for Friday for the left side after treatment. I am getting tired of them. They are painful. First they put a needle in to numb the skin and surface tissue. Then they go deeper and numb the lining of the lung. That one takes your breath away. Once the doc didn't wait long enough for the numbing to occur, or she didn't get enough in there, and I felt the catheter go into my lung. Let me tell you, I've been through childbirth, both the pain of pushing with a little head peeking out, and the pain of a C-section without enough sedative, and I never cried from pain of a medical procedure until that moment. There are so many nerves in your lungs and it was so painful, I actually make sure to tell them every time I go in now what happened and to take it slow. They've been good since, thank God. I'm still done with it. I have an appointment in a few weeks with a thoracic surgeon to talk about next steps. I'm still up in the air on when and if I will get further treatment, but I need to have the consult so I'm ready when the time comes.
One last piece of medical info before I move on. There is a clinical trial at Penn that I'm interested in and have asked my doc about. It's an immunotherapy trial. I have always been a strong believer that immunotherapy is the right treatment for me and I could be full of crap (you know, with my obvious medical and bio-science experience), but when the cancer loves your immune system, it seems only logical that if you reprogram your immune system to fight the cancer, it is your best chance for remission. My doc at Fox Chase agrees this is a good trial for me and told me to contact my doc at Penn, which I have. It often takes a while to get all things dotted and crossed for a clinical trial, so once I know more, I'll let you know, but it may be a while. I may not qualify, but I'm hoping to God I do, and all juju my way on this one would be greatly appreciated.
So the title of this post is from my theme song during this fight, by Gym Class Heroes. There are so many things about this song that I relate to, even though it's not at all about fighting a disease. When I am down and feeling like I just can't do it, that song brings me back to my fighting weight.
"And if I can last thirty rounds
There's no reason you should ever have your head down"
Everyone has their own issues, and everyone needs to complain about things that ultimately don't matter in the end, but when I feel like I am complaining about things too much, or I hear people harping on about things that just don't matter, this is what I think of.
"It's gonna take a couple right hooks a few left jabs
for you to recognize you really ain't got it bad"
And it brings me back to center.
"If you fall pick yourself up off the floor
And when your bones can't take no more
Just remember what you're here for."
Happy 6th birthday, baby girl.
xo, Lisa
Monday, June 23, 2014
Breathe Deep
Breathing is not the easiest thing for me to do well these days. At my last appointment, it was discovered that I had about a liter of fluid on each lung. I had both lungs drained and was breathing easier, but I've noticed over the past few days that my breathing is a bit labored again. In addition, I have a cough that I can't seem to kick. Both issues are worrisome, and yet both can be handled. I met with a pulmonary oncologist who let me know of the treatments that can be done for the pleural effusion (fluid in the lining of the lungs). Treatments range from just draining as needed to surgery that seals the pleura so no fluid can build in it. The cough? Well that's anyone's guess. I've been on allergy meds like Allegra and Singulair, steroid inhalers, Prilosec, OTC and prescription cough meds. You name it, nothing has helped. I've been told it could be a small spot somewhere hidden on my lungs that is causing it, but I am not sure I'm willing to do a bronchial scope to see if it is. Whatever the next chemo is that works will take care of it if it's caused by cancer. I'm not convinced. I had a chronic cough for a while around when I was diagnosed with Celiac. I went gluten free and after a few months, the cough was gone. I have a feeling my relaxed attitude toward cross contamination has caught up with me and has manifested itself in another cough.
So because the cancer is still contained in my lymphatic system (even the fluid on the lungs is a result of the cancer blocking up the lymph vessels), I'm going to try to heal with nutrition. I've gotten some good plant strong cook books and healing with food books and I'm going to try and help this chemo do its thing. Plant strong, low sugar. That's the diet from now on. I'm not messing around. I ordered a rebounder because it's supposed to be the best exercise to move lymph fluid, which is what I need both for the lymphedema and the cancer. Increased oxygen in the cells kills cancer. Exercise increases oxygen. Since my lungs aren't doing a great job of it right now, I need to help my body get oxygen in whatever way I can. Rebounding is low impact and something I can manage for 10-15 minutes, 2x a day. Plus, Kat loves it and it keeps her occupied and burns off some of that boundless energy, so that's an added bonus.
I also had my chemo regimen changed at my last appointment. I'm now on irinotecan, which is the last standard therapy for gastric cancer available. It sucks. It's a 2 hour treatment and I get a shot of atropine prior to control the lovely side effect of explosive diarrhea. Atropine wipes me out, so it's really a waste of a day. I've called Penn and Sloan Kettering to let them know they need to start looking out for clinical trials for which I might qualify. Fox Chase has nothing for me right now.
Cancer sucks ass.
That's it for now.
xo,
Lisa
So because the cancer is still contained in my lymphatic system (even the fluid on the lungs is a result of the cancer blocking up the lymph vessels), I'm going to try to heal with nutrition. I've gotten some good plant strong cook books and healing with food books and I'm going to try and help this chemo do its thing. Plant strong, low sugar. That's the diet from now on. I'm not messing around. I ordered a rebounder because it's supposed to be the best exercise to move lymph fluid, which is what I need both for the lymphedema and the cancer. Increased oxygen in the cells kills cancer. Exercise increases oxygen. Since my lungs aren't doing a great job of it right now, I need to help my body get oxygen in whatever way I can. Rebounding is low impact and something I can manage for 10-15 minutes, 2x a day. Plus, Kat loves it and it keeps her occupied and burns off some of that boundless energy, so that's an added bonus.
I also had my chemo regimen changed at my last appointment. I'm now on irinotecan, which is the last standard therapy for gastric cancer available. It sucks. It's a 2 hour treatment and I get a shot of atropine prior to control the lovely side effect of explosive diarrhea. Atropine wipes me out, so it's really a waste of a day. I've called Penn and Sloan Kettering to let them know they need to start looking out for clinical trials for which I might qualify. Fox Chase has nothing for me right now.
Cancer sucks ass.
That's it for now.
xo,
Lisa
Thursday, May 29, 2014
As a Mom, as a Friend
That is how I've been dealing with cancer lately. It has not been an easy month for me or a lot of other people as far as cancer goes. Several friends have been diagnosed, others have passed. It has not been an easy Spring.
As a mom, cancer has been difficult, not only for the obvious reasons of having stage 4 cancer, but for less obvious reasons as well. I find it is difficult to balance wanting to spend every moment with Kat filled with joy and being a responsible mommy. I also find it difficult to turn off my emotions about cancer sometimes, and Kat often takes a rant she doesn't fully deserve. This happened this week when a friend passed after a battle with pancreatic cancer. As is the case with most cancers, her decline was rapid, and her death took me by surprise when it happened. Not that it was going to happen, which was inevitable, but that it did so soon. That day I found it difficult to keep my emotions in check, and Kat was at the unfortunate end of my wrath that evening. To be fair, she would've been in trouble regardless, but I went off on her a bit more than I should have. I know I should forgive myself these occasional missteps, but it's hard when you know you're wrong and you can't stop yourself. I also have noticed Kat has been much more clingy with me lately than she used to be, and it intensifies when I'm going through a treatment week. When I was diagnosed, she was 3, and she didn't have a huge reaction to anything. Now she's nearly 6 and it's obvious it's affecting her. One night, she asked me why I have to take medicine that makes my hair fall out and I decided, if she was willing to listen, that I would tell her the truth (as much as a nearly 6 year old can handle). I told her that Mommy has cancer and that cancer is a very serious disease for which I will always need to take medicine. Up until then, she just knew Mommy had a "lump" that required medicine, but I never put into words what caused that "lump." After I got done telling her, she cried. She couldn't tell me why exactly she was crying - I asked her if it was because I had cancer, she said no; because I lost my hair, she said no - but just that she needed to cry. I told her I understood the need to cry, even when you're not really sure why you're crying. I do it often. It's cathartic. I told her this and subsequently held her until she fell asleep in my bed. I let her sleep in my bed often now. In no way do I think this will affect her behavior, so it's an indulgence on both our parts that is perfectly acceptable. When Sean's ready for bed, he takes her into her room (unless she's beating the crap out of me, as little ones tend to do, and then she gets the boot sooner). When it comes to acting spoiled, being disrespectful, and not listening, however, Kat gets full blown Mommy discipline. Kat tends to do those things a lot (as I suspect most little ones tend to do), so she hears a lot of nos and warnings and "go to your room"s. As a mom, this is my job. As a mom with cancer, this is very difficult. It's a constant internal battle, but I will not have my child raised as a spoiled little brat, so it's a battle I will wage.
As a friend, I have lost 2 friends in the past month, and 4 friends since my own fight started. I have learned of 4 friends diagnosed. I have learned of one having hard time now after years of beating the crap out of cancer. All moms. I'm not saying Dad's aren't affected - of course they are. It just seems to be the moms who are being hit lately. At least in my world. And it's hard to be a mom with cancer. Moms want to do it all, and that's hard when you're not fully yourself. I try to be a source of information for anyone who is interested. I will gladly share my own experiences, as I have here, and what I've learned along the way. I see no reason to keep it all to myself. It's not like it's a prize. What is difficult for me is when my own diagnosis gets lost in all of it. It's a bit selfish of me to say that, I suppose, but it's true. Cancer deaths and diagnoses hit me extra hard because I'm fighting the battle myself. Being a resource for others is easy and I gladly do it. Being someone to lean on sometimes gets hard. I will say, however, that sometimes depends on who is doing the leaning. It's hard not to feel some sort of jealously for those who have a chance at a cure. Jealousy and joy. I don't want anyone at all to suffer through this. I don't want to lose another friend, another mom, to this awful disease. But I don't want to lose myself either, and so jealousy of that chance, that hope, is often hard to suppress. In those times, I search for articles of hope and inspiration, like the melanoma study results at Lehigh Valley Hospital this month. Hope for a cure, for a better treatment.
In the meantime, I put my happy goggles on and get on with things, because really, what's the alternative?
xo,
Lisa
As a mom, cancer has been difficult, not only for the obvious reasons of having stage 4 cancer, but for less obvious reasons as well. I find it is difficult to balance wanting to spend every moment with Kat filled with joy and being a responsible mommy. I also find it difficult to turn off my emotions about cancer sometimes, and Kat often takes a rant she doesn't fully deserve. This happened this week when a friend passed after a battle with pancreatic cancer. As is the case with most cancers, her decline was rapid, and her death took me by surprise when it happened. Not that it was going to happen, which was inevitable, but that it did so soon. That day I found it difficult to keep my emotions in check, and Kat was at the unfortunate end of my wrath that evening. To be fair, she would've been in trouble regardless, but I went off on her a bit more than I should have. I know I should forgive myself these occasional missteps, but it's hard when you know you're wrong and you can't stop yourself. I also have noticed Kat has been much more clingy with me lately than she used to be, and it intensifies when I'm going through a treatment week. When I was diagnosed, she was 3, and she didn't have a huge reaction to anything. Now she's nearly 6 and it's obvious it's affecting her. One night, she asked me why I have to take medicine that makes my hair fall out and I decided, if she was willing to listen, that I would tell her the truth (as much as a nearly 6 year old can handle). I told her that Mommy has cancer and that cancer is a very serious disease for which I will always need to take medicine. Up until then, she just knew Mommy had a "lump" that required medicine, but I never put into words what caused that "lump." After I got done telling her, she cried. She couldn't tell me why exactly she was crying - I asked her if it was because I had cancer, she said no; because I lost my hair, she said no - but just that she needed to cry. I told her I understood the need to cry, even when you're not really sure why you're crying. I do it often. It's cathartic. I told her this and subsequently held her until she fell asleep in my bed. I let her sleep in my bed often now. In no way do I think this will affect her behavior, so it's an indulgence on both our parts that is perfectly acceptable. When Sean's ready for bed, he takes her into her room (unless she's beating the crap out of me, as little ones tend to do, and then she gets the boot sooner). When it comes to acting spoiled, being disrespectful, and not listening, however, Kat gets full blown Mommy discipline. Kat tends to do those things a lot (as I suspect most little ones tend to do), so she hears a lot of nos and warnings and "go to your room"s. As a mom, this is my job. As a mom with cancer, this is very difficult. It's a constant internal battle, but I will not have my child raised as a spoiled little brat, so it's a battle I will wage.
As a friend, I have lost 2 friends in the past month, and 4 friends since my own fight started. I have learned of 4 friends diagnosed. I have learned of one having hard time now after years of beating the crap out of cancer. All moms. I'm not saying Dad's aren't affected - of course they are. It just seems to be the moms who are being hit lately. At least in my world. And it's hard to be a mom with cancer. Moms want to do it all, and that's hard when you're not fully yourself. I try to be a source of information for anyone who is interested. I will gladly share my own experiences, as I have here, and what I've learned along the way. I see no reason to keep it all to myself. It's not like it's a prize. What is difficult for me is when my own diagnosis gets lost in all of it. It's a bit selfish of me to say that, I suppose, but it's true. Cancer deaths and diagnoses hit me extra hard because I'm fighting the battle myself. Being a resource for others is easy and I gladly do it. Being someone to lean on sometimes gets hard. I will say, however, that sometimes depends on who is doing the leaning. It's hard not to feel some sort of jealously for those who have a chance at a cure. Jealousy and joy. I don't want anyone at all to suffer through this. I don't want to lose another friend, another mom, to this awful disease. But I don't want to lose myself either, and so jealousy of that chance, that hope, is often hard to suppress. In those times, I search for articles of hope and inspiration, like the melanoma study results at Lehigh Valley Hospital this month. Hope for a cure, for a better treatment.
In the meantime, I put my happy goggles on and get on with things, because really, what's the alternative?
xo,
Lisa
Friday, April 25, 2014
Pop on your happy goggles!
I just saw that expression from the dirtgirlworld page on Facebook and I LOVE it! I'm so using it all the time now! It's especially fitting today, though, because my CAT scan this morning came back showing no new disease. Woohoo!! Now this doesn't mean no disease at all, but that the disease is stable. There are a few areas to watch for, namely some nodules in my lungs that most likely are from inflammation (from something like allergies or a cold), but could be the beginnings of tumors. So we watch them. The lesion on my spine has resolved, the inguinal nodes in my left groin have resolved, and, my favorite, my gallbladder, spleen, pancreas, adrenal glands, bladder, uterus, and remaining fallopian tube are all unremarkable (I love that word). There has been a mild decrease in fluid in my left lung, and a mild increase in my right, but my doc doesn't think that means much of anything right now. The fluid is still minor and not an immediate cause for concern.
Ok, so we continued today on the same treatment of epirubicin and 5-FU(!). I was convinced the cancer on my skin was spreading, but my doc said the lesions she originally saw (which I did not) are gone, and the remaining rash looks like it may be from inflammation rather than cancer. So same treatment today with the understanding that we will reassess the skin at my next appointment and, if it seems to be spreading, she will change my treatment then. We'll assess using, as she says, our "external CAT scan," or my skin. She also let me know we still have other treatments to consider before moving to clinical trials, and since I'm unknown primary, after the standard gastric treatments, she can essentially just make stuff up as she sees fit, which I thought was funny. Like a mad scientist, she can throw treatments in a glass beaker filled with green, smoking fluid, and inject me with it at will. Mmmmwwwahahahahaaaaaa.
So as for the clinical trials, I was rejected for the first one she applied me for, as it was for gastric cancer and I am unknown primary. She has submitted my info for an immunotherapy-based trial which I am STOKED about, since that's the treatment I want, being that the cancer is in my lymphatic system and the lymphatic system is the body's major immune system. However, very few people are selected for this trial as they have to be positive for a certain protein expression, and very few people have it. In addition, they may say no solely based on my diagnosis, which is not gastric cancer. So I expressed concern over this, but Dr. Dotan assured me that I would be accepted at least for Phase I trials even with my diagnosis, and there are plenty of phase I immunotherapy trials in the works. Phase I trials are done to determine toxicity in humans, as the drugs have not been tested on humans before. Whatevs. Like I'm not a human guinea pig already. If it works, who cares that it went straight from a rat to me??
Ok, so that's the news today. As I will most likely be sleeping all weekend (this treatment does that to me), I'd like you all to pop on your happy goggles and go enjoy the weather, wherever you are!
xo,
Lisa
PS - As I mentioned last time, there is a lot of bad juju going on in my immediate cancer world, so if you would, please send those good vibes to all survivors, caregivers, and those whose fight is ending. Let's do a universal spirit lift this weekend, shall we?!
Ok, so we continued today on the same treatment of epirubicin and 5-FU(!). I was convinced the cancer on my skin was spreading, but my doc said the lesions she originally saw (which I did not) are gone, and the remaining rash looks like it may be from inflammation rather than cancer. So same treatment today with the understanding that we will reassess the skin at my next appointment and, if it seems to be spreading, she will change my treatment then. We'll assess using, as she says, our "external CAT scan," or my skin. She also let me know we still have other treatments to consider before moving to clinical trials, and since I'm unknown primary, after the standard gastric treatments, she can essentially just make stuff up as she sees fit, which I thought was funny. Like a mad scientist, she can throw treatments in a glass beaker filled with green, smoking fluid, and inject me with it at will. Mmmmwwwahahahahaaaaaa.
So as for the clinical trials, I was rejected for the first one she applied me for, as it was for gastric cancer and I am unknown primary. She has submitted my info for an immunotherapy-based trial which I am STOKED about, since that's the treatment I want, being that the cancer is in my lymphatic system and the lymphatic system is the body's major immune system. However, very few people are selected for this trial as they have to be positive for a certain protein expression, and very few people have it. In addition, they may say no solely based on my diagnosis, which is not gastric cancer. So I expressed concern over this, but Dr. Dotan assured me that I would be accepted at least for Phase I trials even with my diagnosis, and there are plenty of phase I immunotherapy trials in the works. Phase I trials are done to determine toxicity in humans, as the drugs have not been tested on humans before. Whatevs. Like I'm not a human guinea pig already. If it works, who cares that it went straight from a rat to me??
Ok, so that's the news today. As I will most likely be sleeping all weekend (this treatment does that to me), I'd like you all to pop on your happy goggles and go enjoy the weather, wherever you are!
xo,
Lisa
PS - As I mentioned last time, there is a lot of bad juju going on in my immediate cancer world, so if you would, please send those good vibes to all survivors, caregivers, and those whose fight is ending. Let's do a universal spirit lift this weekend, shall we?!
Wednesday, April 16, 2014
Spring anew, opinions abound
I realize it has been a while, but I don't have much new to say. Well, that's not entirely true. There is enough to tell, but I'm tired of talking about it.
I had my appointment at Penn and saw Dr. Titlebaum, who specializes in GI cancers and unknown primary. They seem to go hand in hand within the world of oncology. Anyway, nothing surprising from her except that she thinks my case is interesting. She kept repeating it. Interesting. This is not new to me. If anyone knows anything about the Cochran family medical history, we are nothing if not interesting. Anyway, Dr. Titlebaum told me I have a rare opportunity to see how my treatment is working without needing a scan, due to the cancer rash on my skin. You might think, "Oh yeah, that's awesome, you can see it getting better!" You'd be wrong. It seemed to get better before my last treatment, prompting a joyous response and a "Let's DO this!" attitude, but since then, the rash has gotten worse. Every morning I look in the mirror to see it has spread across my torso, and every night I go to bed in pain from the swelling in my chest and shoulders, a result of the day. By morning the swelling is down, but that rash is always a reminder that things have not gotten better. I was due for treatment this Friday but, with the Easter holiday, we pushed it back a week. Now part of me is regretting that decision, but I have the day off with Kat and I want to keep that mommy/daughter day for just the two of us, so I'm not calling to change it.
Oddly, my worry is not that this is the end and nothing else will work, although, understandably, that does occasionally overtake any strengthening thoughts I have. No, my real worry is that I'm giving the cancer a chance to spread before trying a new treatment, and that one extra week, I fear, is going to be the difference. I'm not sure that's the case, but it's in the back of my mind. Well, the front of my mind, really. And my entire goal is to keep it in my lymph system. Just keep it there and I've got a chance. Don't let it spread to the organs. So I do yoga and reduce my sugar intake in the hopes of controlling the swelling and starving out the cancer until the next treatment. Just keep it where it is.
Anyway, the one interesting thing Dr. Titlebaum said was I present like a breast cancer patient, except for the cancer being found in the groin, but I'm reacting to treatment as a gastric cancer patient. As such, I am more likely to be approved for breast cancer style treatments (which are abundant), so I have slightly more options than most gastric cancer patients. Doesn't mean they'll work, but I have them available.
I've been "accepted" for an appointment at Memorial Sloan Kettering, which is scheduled for May. No lie, accepted. I called there to make an appointment at my doctor's recommendation and was told, after much back and forth and talks about needing more options for clinical trials, that they had nothing there for me. Well duh - there are no treatments for unknown primary. It might be nice to look at my case though, before you tell me you have nothing for me. So I got a number for my doc to call and discuss my case and I finally got a call back after a week. I was told, "Dr. Varghese has looked at your file and has decided to accept you for further review. She'd like to make an appointment to discuss things further. I have you scheduled for April 25th, does that work for you?" Uh, no. So I scheduled the appointment for the first week in May. Dr. Varghese is also a GI oncologist with experience with unknown primary. I keep hoping one of these docs won't be GI and will think outside the box a bit, but I know GI is the logical place to put me.
And finally, a plea. Please take care of yourselves. We've had a string of bad luck in the cancer world recently, especially the world close to home. Cancer is a horrible, horrible disease that needs to be eradicated, once and for all. Until that time comes, please take care of yourselves, both mentally and physically. Spring is the perfect time to start. Reduce your intake of processed foods, eat more fruits and veggies (should be easy now with the change of seasons!), go out and enjoy the weather with friends and family. Take frequent walks, have long talks, give good hugs. Remember how short life can be and don't abuse the time you have here. You don't want to ever be in a situation where you say, "I wish I would have...."
Happy Passover and Easter all.
xo,
Lisa
I had my appointment at Penn and saw Dr. Titlebaum, who specializes in GI cancers and unknown primary. They seem to go hand in hand within the world of oncology. Anyway, nothing surprising from her except that she thinks my case is interesting. She kept repeating it. Interesting. This is not new to me. If anyone knows anything about the Cochran family medical history, we are nothing if not interesting. Anyway, Dr. Titlebaum told me I have a rare opportunity to see how my treatment is working without needing a scan, due to the cancer rash on my skin. You might think, "Oh yeah, that's awesome, you can see it getting better!" You'd be wrong. It seemed to get better before my last treatment, prompting a joyous response and a "Let's DO this!" attitude, but since then, the rash has gotten worse. Every morning I look in the mirror to see it has spread across my torso, and every night I go to bed in pain from the swelling in my chest and shoulders, a result of the day. By morning the swelling is down, but that rash is always a reminder that things have not gotten better. I was due for treatment this Friday but, with the Easter holiday, we pushed it back a week. Now part of me is regretting that decision, but I have the day off with Kat and I want to keep that mommy/daughter day for just the two of us, so I'm not calling to change it.
Oddly, my worry is not that this is the end and nothing else will work, although, understandably, that does occasionally overtake any strengthening thoughts I have. No, my real worry is that I'm giving the cancer a chance to spread before trying a new treatment, and that one extra week, I fear, is going to be the difference. I'm not sure that's the case, but it's in the back of my mind. Well, the front of my mind, really. And my entire goal is to keep it in my lymph system. Just keep it there and I've got a chance. Don't let it spread to the organs. So I do yoga and reduce my sugar intake in the hopes of controlling the swelling and starving out the cancer until the next treatment. Just keep it where it is.
Anyway, the one interesting thing Dr. Titlebaum said was I present like a breast cancer patient, except for the cancer being found in the groin, but I'm reacting to treatment as a gastric cancer patient. As such, I am more likely to be approved for breast cancer style treatments (which are abundant), so I have slightly more options than most gastric cancer patients. Doesn't mean they'll work, but I have them available.
I've been "accepted" for an appointment at Memorial Sloan Kettering, which is scheduled for May. No lie, accepted. I called there to make an appointment at my doctor's recommendation and was told, after much back and forth and talks about needing more options for clinical trials, that they had nothing there for me. Well duh - there are no treatments for unknown primary. It might be nice to look at my case though, before you tell me you have nothing for me. So I got a number for my doc to call and discuss my case and I finally got a call back after a week. I was told, "Dr. Varghese has looked at your file and has decided to accept you for further review. She'd like to make an appointment to discuss things further. I have you scheduled for April 25th, does that work for you?" Uh, no. So I scheduled the appointment for the first week in May. Dr. Varghese is also a GI oncologist with experience with unknown primary. I keep hoping one of these docs won't be GI and will think outside the box a bit, but I know GI is the logical place to put me.
And finally, a plea. Please take care of yourselves. We've had a string of bad luck in the cancer world recently, especially the world close to home. Cancer is a horrible, horrible disease that needs to be eradicated, once and for all. Until that time comes, please take care of yourselves, both mentally and physically. Spring is the perfect time to start. Reduce your intake of processed foods, eat more fruits and veggies (should be easy now with the change of seasons!), go out and enjoy the weather with friends and family. Take frequent walks, have long talks, give good hugs. Remember how short life can be and don't abuse the time you have here. You don't want to ever be in a situation where you say, "I wish I would have...."
Happy Passover and Easter all.
xo,
Lisa
Friday, March 7, 2014
Another day, another treatment plan
Well, a lot has happened since I last checked in. I developed swelling and a rash on my right breast and torso about a month ago and I had that biopsied last week. I wanted some answers before I told anyone about it, and I got my answers today. I was hoping they would tell me it either from the Coumadin I'm taking or it was inflammatory breast cancer, since, while it's the worst breast cancer to have, the prognosis for IBC is much better than stomach or unknown primary cancers. I should have known it would be worse than that. The biopsy was positive for cancer, but not IBC. It is the same presentation as I've had all along - cancer of an unknown primary, focused on upper gastrointestinal cancers. I had no idea cancer could develop on the skin, unless of course it's a skin cancer. Turns out it can in my case. Here's how:
I have cancer in my lymphatic system. It originally presented itself in the lymph nodes of my right groin (inguinal nodes). Further studies showed it had reached my reproductive organs, but through the lymphatic system, not through tissue (which is usually how carcinomas move). The cancer has only ever been in the lymphatic system. It has never spread to organs other than through lymph vessels. This is good because it means it's contained in one system, similar to a leukemia or lymphoma. However, it is not lymphoma and so cannot be treated as a cancer of the lymph system, much to my dismay. Today was to be my third treatment since adding the docetaxol back into the regimen. However, with the biopsy coming back positive for cancer, it appears the treatment is not working. The cancer has spread. I got another CT today three weeks earlier than originally scheduled so they can set a baseline for a new treatment I started. This one is lovely. I'm now on Epirubicin, 5-FU, and, starting again next week, Herceptin. I'm no longer taking carboplatin or docetaxol (yay!). The majority of the side effects are the same except one: Epirubicin can cause cardiac issues. Normally this is not a huge deal except it can only be given to a certain point before it causes heart damage. The kicker is that Herceptin has the same risk. So I'm now on two treatments that can cause heart damage. My doc said they normally wouldn't give both drugs together, it's just not done, but I'm special, as we all know, and she feels the potential benefits outweigh the risks. My response to her was we're talking about my life. I will do whatever it takes to prolong that. So off we go. Epirubicin is a red liquid and, thank God, they warned me it would come out in my urine as a lovely peachy-pink color. That happens pretty quickly. Like I said, thank God they told me that or I would've panicked just a bit. It's quite startling to see.
So my doc also told me she's in kind of uncharted territory here and she wants me to go to Penn for a second opinion. I asked why Penn and she said they're the best in the city area for this kind of cancer. I asked where she would recommend outside of this area and she said Memorial Sloan Kettering. So I'm going to both. Dr. Dotan doesn't think either will say anything different than what has already been said, but going to them puts me in their system and on the radar for potential clinical studies. If, God forbid, this treatment doesn't work, my next step would be a clinical trial and Fox Chase currently only has one I'd potentially be eligible for. Dr. Dotan is going to work to get my insurance to approve me for breast cancer treatment, which is still a possibility because the cancer is now HER2 +, and that opens up even more clinical trials to me, but she thinks it'll be a fight to get approved for those studies. I'm very happy to have a doctor who looks out for her patients enough to send them to other facilities and to admit when she's out of ideas, but I don't like that this scenario came sooner than I had hoped. I knew I'd get to the point where standard treatments were no longer an option, but I didn't want it to be so soon. I guess the cancer has different plans.
Hopefully the CT shows nothing much different than it did 8 weeks ago and the cancer is still only in the lymphatic system. I'm going to start researching how to strengthen the immune system and heal the lymphatic system so I can give my body the extra boost it needs to get these drugs working properly. I've already cut dairy down tremendously and I only eat organic meat when I eat it at all. At this point all diary will be out and meat will be only on special occasions, like holidays and other gatherings. It's time to reset. I may even do a cleanse, although I'm not sure how effective it would be with chemo coursing through my veins. We'll see. I'm going to look into a local yoga class and really start to center myself and keep my body as strong as it can be so I can continue to fight this with everything I have. I told my doc I was very frustrated to feel fine and be as active as I am and be told my cancer is spreading. I don't FEEL like it's spreading. I don't FEEL like I have cancer, if not for the chemo effects. She told me I should take that as a good thing because it means I'm strong enough to handle whatever they throw at me.
That's one way to look at it. I look at it as an inconvenience that is preventing me from living my life as I wish. Fucking cancer.
xo,
Lisa
Thursday, February 13, 2014
Treatment and work, work and treatment
I feel like this is all I do. Go to work, go to treatment. Go to treatment, go to work. Since the increase in chemo in my last round, I've been pretty much down for the count. Turns out, though, I had a sinus infection to top everything off. I got me some good drugs (God bless the z-pack!) and I'm good to go now. Sometimes you don't truly realize how sick you are until you start to feel better. So I'm interested to see how I handle the next round, starting tomorrow, now that I am not dealing with a cold or that sinus infection anymore. Hopefully it won't be as bad as last time.
So I know I didn't give an overall update like I said I would after last treatment. Turns out the fluid in my lungs tested positive for cancer. I asked my doc what that meant and she said, "Well, it means what we're doing now isn't working." So I'm going to take her at her word and just think of this as a minor setback. I'm back on the docetaxel in addition to the carboplatin, 5-FU(!), and herceptin, and I believe it'll work this time like it did last time. I can already feel the fluid building in my lungs again, but I've only had one treatment, so I have hope that fluid will reduce over time. Also, I only had my left lung drained and the fluid is in my right lung, so it may actually have been there already. I'll have to ask. I know it's not enough fluid to be detected by a stethoscope, since my primary care told me my lungs sounded fairly clear when I saw him for my sinuses. He knows all about the cancer and my treatment, so he was listening for fluid.
When my doc called to let me know the fluid was positive, she asked if I was still working and, to be honest, sounded a little disappointed when I said yes. I have gotten quite a few comments over it since I started treatment again, so I thought it warranted addressing. I like work. I like the people I work with and I like my job. It's a low stress job and a nice building and nice people and generally, it's good overall for me. I'm not going to go out on disability unless I cannot physically perform my job or unless I suddenly feel like I'm under too much stress and it's acting against me. I feel like a grown up again, and one not focusing solely on cancer. The point of treatment is to not only treat the disease, but to also give some sort of quality of life. While I'd much rather be independently wealthy and travel the world, working allows me to believe, if just for the time I'm there, that I'm normal. That I'm healthy. That I'm just like everyone else. So please, trust that I understand my body and what I can handle, and that I will make the right decision, and the best decision, for me, for my health, and for my family.
One final note: my hair is falling out pretty good now. This does not make me happy. For a little while, I thought I might get away with just thinning hair this time. No such luck. I have an appointment with a salon that styles wigs on Saturday. I have what I like to call a transitional wig so I look like my hair just has magically grown an inch or two overnight, but the color is sort of spot on what I have now. It's a synthetic wig, but it'll work for a few months until enough time has passed before I start using my human hair wig, which is a completely different color. Closer to what I had before this all started, but something that would raise enough eyebrows in work that people would question what happened if I started wearing it right away. The point is to NOT draw attention to yourself with your wig. I'm not one to "own" my baldness or go out with crazy wigs. I want to look like me, so I'm happy to have a wig that allows me to do that. I'll get back to my blonde "roots" sooner or later. It's just not something I want to do overnight.
Treatment tomorrow. I'm hoping #1 I can make it in all this snow, and #2 it will be a rather uneventful day for a change.
xo,
Lisa
Saturday, January 25, 2014
New year, new challenges, new resolution
It's freaking coooooold. Where is summer??
Well, my first CT on this regimen didn't go as I'd hoped. While the tumor in my groin is down, a spot on my spine that was previously unclear has grown, and I have fluid in my lungs. At first Dr Dotan was confused about the fluid because there was no fluid of concern in October's scan. But radiology had not submitted their report yet so she was going by what she saw. She scheduled the drain of my lungs to test the fluid and told me to come back after to get the rest of the orders for the next chemo. Then when I saw her next, she had spoken to the radiologist who pointed out a small mark on my spine from October that seems to have grown, indicating it is cancer. Not a huge concern about the bone, but since it is closer to the lungs, she decided I should go back on docetaxol because we know it works. Which means back to wearing wigs! The lungs could very well be from the lymphedema. I've read it often from boards and articles. It's not a great development but obviously that's preferable to it being cancer. Doc was worried about the bone and lungs together enough to change the treatment plan. I'm upset about losing my hair and that I'll have increased side effects, like mouth sores. Ugh. But I'm going hard core cleaning up my diet now to give my immune system the best possible chance to work with the chemo and keep suppressing things. No more growth!! That's why I went hog wild with the fast food. I had intended on that being my last meal before things got bad, but decided it would be my last meal before things got good! I'm kicking this body's ass into gear!
So for the record, I'm now on 4 chemo drugs, a drug to strengthen my bones, and 5 preinfusion drugs. Good times.
It's always hard when you're told the cancer has spread. But like Dr Dotan said, there have been patients who have lived 10 years with bone metastasis. In 5 years I truly believe the treatment of cancer will have changed drastically. There is so much hope in research now. I just need to do what I can to fight it off until something much better comes along. That has always been the goal. They just need to get that immunotherapy approved for gastric cancer!
Just a bump in the road folks. No sense in holding onto anger. It just brings you down when you need to be lifted up!
Xo,
Lisa
P.S. I'll know the results from the lung drain next week. I'll let you know.
Friday, January 3, 2014
Ending the first cycle, a reflection back, and moving forward.
Well that was a long title! I'm typing this post on my new iPad (that I WON through the KYW 20 days of Tablets contest, did I mention?). Please excuse any typos I may miss. Also, I'm very tired and still rather loopy from the Ativan, so bare with anything incoherent or rambling.
Today started my 3rd treatment in the cycle. Before the next one I'll get a CT to assess how things are going. As is normal with the first round, I'm feeling quite anxious right now, so instead of another post explaining how I'm feeling or what it's like leading up to the CT, I thought I'd share some of my dos and don'ts when dealing with those with cancer. These would probably apply to other chronic diseases, but I'll stick with what I know.
DO keep in touch. It is very important to maintain old and make new friendships while dealing with such a heavy condition. Laughter truly is the best medicine and good friends know when it's appropriate. Text works best for quick shout outs and setting up lunch or drinks. Sometimes phone calls are hard, but if that's all you got, the phone works too. In person is always best. With some stipulations.
DON'T be offended if I don't have the energy to reach out first or if it takes me time to get back to you. Life is busy and exhausting on so many more levels than ever imaginable. I go out and see people. I just don't do the planning much anymore. Send me a text or FB me with specific times, and if I can make, I'll be there.
DO ask questions. I'm more than happy to answer them. I prefer questions over the head tilt + sigh. You know the one.
DON'T turn away if I want to talk about the cancer or lymph edema or anger or how wrong it is that cancer thrivers even HAVE any other ailment to begin with!! Be angry with me, or just listen, or offer wine, or distract me. I love distraction. I used to be fun! On the flip side, don't be surprised if I show no interest in talking about it. It goes both ways. Just don't give me that head tilt + sigh. Seriously.
DO offer help when you think it's needed. Truly needed. We all get to the point where pride takes a back seat and we realize help would be nice.
DON'T offer help just to make you feel better. I know that sounds harsh, but it's true. Offering to bring a lasagna when you know I can't eat it isn't helping me, and Sean and Kat will never eat that much. Sending over a gift card to a local place that does takeout - yes! Now you're thinking! I greatly appreciate everything everyone has done for me, from the slightest gesture to helping make the dream vacation a reality. Just don't put it on yourself to feel obligated. Some people are just not obvious helpers. Those people have ways to help they don't even realize, often in humor or alcohol. Or both. Choose your path.
DO show emotion around me. It's fine. This is a hard thing to go through and if you're showing any kind of emotion, I know you care. That's huge support. Laugh, cry, cheer me on, get angry. It's all good and it all gives me strength. On the other hand...
DON'T do either of these: tell me I'll be cured. I won't. I have stage 4 cancer. At best it's a long-life-long chronic battle. I've always said my goal is to keep going until the next great drug comes along. That's still the plan. Also DON'T act as if every piece of info I share about my treatment or the cancer is just awful, merely because it's cancer. When I say the tests showed the cancer is aggressive but can be targeted, focus on the targeted treatment, not that it's aggressive. Aggressive cancers respond well to treatment. It's good!
Finally, DO comment! I love knowing you're reading and what you think. I'll answer questions, too!
I think that's good for now. I'm up way too late.
XO,
Lisa
My view from my chair in the infusion room today. Work and life.
ETA: GD Auto correct apparently doesn't know the diff btw well and we'll. made 2 post publish edits to Lisa-correct them.
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