It's come to my attention that my last post may have seemed too harsh to some. I re-read it, and I wonder why I feel the need for people to "get" stage IV cancer. Maybe I just want them to get "me" in the place I am now. Danny has always told me that I care too much about what others think about me. I suppose that's true!
Yesterday was a sad day. My mom left to go home to Louisiana after spending over a week here with me. I know she has her own work to do and others to care for at home, but it was so nice having her here! She kept me company during these long, boring days I'm having at home, and she helped our family in countless ways. Mostly we did a LOT of talking, which was awesome.
On to the cancer update ...
A couple of weeks ago, after receiving the dismal CT results by phone from Dr. Coscio, I quickly agreed (of course I did) to a change in chemotherapy. Having time to mull over the CT report while awaiting insurance approval, AND having a more uncomfortable recovery from the thoracentesis, I kind of sort of fell into yet another sad period. Because this is all so hard!
The latest thoracentesis was complicated by my uncontrollable coughing fit during the procedure, which had the doctor behind me pretty exacerbated and nervous. As if I could control the urge to cough! He ended up removing the needle after only draining 1500cc this time. For a couple of days afterwards, I had soreness (actually, pain) at the needle insertion site that I did not have the first go round. Yet again this time, my lung did not re-inflate after the fluid was removed. And unfortunately, this thoracentesis did not afford me the relief that the first one had in the way of eating easier, breathing easier, and coughing less. :(
A couple days after the CT result phone call, I received a phone call from the doc's APN who informed me that the new chemo was approved and could I come in on that very day for the first dose. At which point I started crying. Balling, really. I felt like I needed to schedule a visit with the doctor to discuss everything. At the time I thought a phone call with results was just fine, but it was far from fine. I was tired of everything, scared of the new chemo and how was my body going to take it and I don't know what to do and ... really it was very unlike me to put on such a display of emotion, but I guess maybe it was long overdue. Or something! Later that night, during my regular text conversation with my mom, I asked if she would come visit me from N.O. I was definitely losing it. She was here within a few days, because a mom knows when her daughter needs her mom.
Needless to say I did not go for chemo on that day and instead, scheduled an appointment with the doctor for the following Monday. This time my mom accompanied me to my doctor appointment instead of Danny, only because only one visitor was allowed in the exam room and chemo room, and this was her opportunity to meet my caregivers for the first time. I'd been wanting her to meet these wonderful people!
Dr. Coscio entered and asked if I wanted to see the CT scan. Of course I did. She showed us the gigantic pleural effusion and the resultant shrunken condition of my left lung. To get an idea, hold up your left hand. That is my right lung. Now imagine my left lung, which is about the size of a quarter in comparison to the right lung. The remaining space is filled with fluid. She showed us the thickening nodules in the left pleura, indicative of progressive metastatic disease. She said "what's right is left and what's left is right when you're looking at the scan." I silently acknowledged that she was saying this for my mother's benefit, for which I was thankful. Because I already knew this fact. You know, having seen so many of my scans and having a medical background and all. Then she pointed and said "There's your heart." And to myself I'm like, yep, there's my heart. Again, nice of her to walk my mom through the scan like this. THEN she said "It's supposed to be on the other side."
A wave of OMG washed over my whole body, and my eyes filled with tears, but I did not let them fall. Somehow, I held it together while I absorbed the fact that my. entire. heart. was displaced to the right side of my chest by the large pleural effusion that had long taken over the left side. The CT report had stated that I had a "new mediastinal shift to the right," and I knew that in the past, my esophagus had shifted, causing me to have difficulty eating. But this visual, seeing and hearing the words that my heart was in the wrong place, was so bizarre and jarring ... let's just say one can never forget it. Ever.
After some measure of silence, I was able to ask if it had relocated back to its proper position after the thoracentesis. She attempted to pull up the post-thoracentesis chest x-ray, but the computer wasn't cooperating and we weren't able to see it. I take that as God's way of saying "You've had enough today, Kim, you can't handle any more." Dr. Coscio went over the two new chemo drugs I'd be starting and I signed consents, completed the necessary paperwork, and received prescriptions for this and that. In a short while, I would be heading over to the clinic to have my first infusion.
Once my mom and I were alone again in the exam room, we talked and discovered that we each had had the same overwhelming flood of emotion at the same time. A sense of disbelief but knowing that it was true. Thoughts of "I've never heard of anything like that before," but there it was, we both saw it, plain as day. The realization that my situation was much more dire than ever before.
So I'm a go with Gemcitabine and Carboplatin -- had my first combo dose last week and Gemcitabine alone this week. Had to step up my anti-nausea medications last week, and I'm very tired. I seem to be coughing a little less, but I don't want to get my hopes up too soon.
I went to church this past Sunday, because it had been a few weeks, and also because my GIRL was playing drums this week and my big GIRL was singing! They are so awesomely talented. And beautiful. And smart. But I digress ...
I made what I now know was a big mistake by allowing my mom to drop me off in front of church and walking into church alone. By the time I reached our family's pew, I was extremely short of breath and felt like I was going to pass out. My heart was pounding and I couldn't sit down fast enough! Evidently this was the farthest I had attempted to walk (and probably the quickest) in a while. I sat, then I cried, mourning the sad, sad condition of my ailing body. That I couldn't even walk into church without getting out of breath! It took a long, long time for me to get ahold of myself and stop the sobbing. With Danny's help and reassurance, I finally did, though, but not without upsetting my kids and mom.
Note to self for next doctor visit: ask if she's ever seen a patient's heart move to the right side. Just curious.
Wednesday, March 4, 2015
Wednesday, February 18, 2015
Update and a Little Rant
Hello all. Happy Valentine's Day, Happy President's Day, and Happy Mardi Gras! That should cover everyone! Yesterday I received my 2nd king cake of the Mardi Gras season, thanks to my sister-in-law Gwen. SO GOOD!!! I miss my hometown and parades and all the music & food that goes along with them. I'm sorry that I'm no longer able to provide my kids with the whole carnival time experience. Growing up, I thought everyone had Mardi Gras holidays from school & work. Good times.
Sigh ... here in realityville ... the ups and downs of stage IV cancer treatment have been pretty intense. I was so hopeful after what seemed like an amazing response to my first course of Ixempra. However, how I felt after my second course was much less than amazing. I kept waiting for that "I feel alive again" moment, but it never seemed to come. Coughing, difficulty digesting food (even in small quantities,) pain, and evening low-grade fevers were all worsening. I've become a prisoner in my own home, alone, only venturing out for a select few kids' activities and church if I determined that my white cell counts could be depended upon to provide my body with adequate protection from infection. Either of these (the worsening of symptoms or the all-day every-day staying home) could plummet even the strongest person into a depressive state. Together they have really done a number on my mood and level of hope. It is hard to keep going.
My mom checks in on me with daily "How you feeling?" texts. I have a lot of people praying for me and who care about me. It's just difficult to keep answering the questions with honesty. If you're lucky (wink wink) and you're really close to me, you might get a super-honest "crappy" or "not so great." If you're an acquaintance, you'll probably get something like "could be better, but could be worse!" or "well, I'm here" (such as with church friends, because it IS actually a HUGE accomplishment to get myself up, dressed, and to church.) Sometimes it gets old to keep burdening the family with my brutal honesty, so I say "I'm good" or just don't respond to the text, in which case they KNOW that you must not be well, because they know you that well! At times you think that even a not-so-close friend seems like she genuinely wants to know what's going on. You take a chance, you start telling her, but you sense immediately when you've said too much: her eyes start to glaze over and you think she is probably regretting that she even asked the question. You end the conversation immediately, and then you're not sure who feels more ill-at-ease, you or her? The real kicker here is that sometimes I, the patient, end up comforting her, the "friend" because something I said has jarred her, or confused her, or made her start tearing up.
The reality is that MOST people DON'T understand this life of mine as a stage IV breast cancer patient. They don't have to, and it's not their fault, either. It's something that you have to experience to "get." (And I don't wish that on anyone!) I know people who, by some strange phenomena, have lived to adulthood without ever having had cancer touch their lives in any way. They know nothing about it. Some are curious and some are not. I appreciate when they tell me that they don't even know what to say, because they've never known anyone with cancer. God bless them! And, wow.
Others (most people, I think) have had limited exposure to cancer patients, so what they do know is, well, limited. Most folks know this: you get cancer, you get chemotherapy, you lose your hair, and when your treatment is over, your hair grows back and you live happily ever after. What most folks DON'T understand, is how someone can be on an "endless" treatment regimen. Back when I was a newbie stage IV cancer patient, I myself didn't even "get" this, because I hadn't yet experienced it. It's uncommon. Over the holidays, my hair grew back some. (it was great!) But when I got sick again, and lost my hair again, I heard someone say "I thought she was finished with her treatments!" Anyway, I'm not sure how I got off on this tangent! Guess it's just a peeve of mine. Guess it can be hard to grasp how someone could receive cancer treatment, continuously, for over 15 years, like me!
So ... the latest. I'm awaiting insurance approval to begin a new chemotherapy combo (Gem-Carbo) as soon as possible. The Ixempra was not working, as evidenced by my very, very ugly CT scan from last week. Had my second thoracentesis done yesterday which, sadly, I looked forward to all weekend! How pitiful is that that I could hardly wait to have excess fluid ("very large pleural effusion") drained from my lung?? My first thoracentesis back in October offered me so much relief from the incessant coughing and difficulty swallowing & sleeping, that I couldn't help being hopeful that it would work the same way this time. Perhaps it's too early to tell.
Very, very nervous about yet another chemo drug. And I'm really getting tired of it all. I'm worn out!
Sigh ... here in realityville ... the ups and downs of stage IV cancer treatment have been pretty intense. I was so hopeful after what seemed like an amazing response to my first course of Ixempra. However, how I felt after my second course was much less than amazing. I kept waiting for that "I feel alive again" moment, but it never seemed to come. Coughing, difficulty digesting food (even in small quantities,) pain, and evening low-grade fevers were all worsening. I've become a prisoner in my own home, alone, only venturing out for a select few kids' activities and church if I determined that my white cell counts could be depended upon to provide my body with adequate protection from infection. Either of these (the worsening of symptoms or the all-day every-day staying home) could plummet even the strongest person into a depressive state. Together they have really done a number on my mood and level of hope. It is hard to keep going.
My mom checks in on me with daily "How you feeling?" texts. I have a lot of people praying for me and who care about me. It's just difficult to keep answering the questions with honesty. If you're lucky (wink wink) and you're really close to me, you might get a super-honest "crappy" or "not so great." If you're an acquaintance, you'll probably get something like "could be better, but could be worse!" or "well, I'm here" (such as with church friends, because it IS actually a HUGE accomplishment to get myself up, dressed, and to church.) Sometimes it gets old to keep burdening the family with my brutal honesty, so I say "I'm good" or just don't respond to the text, in which case they KNOW that you must not be well, because they know you that well! At times you think that even a not-so-close friend seems like she genuinely wants to know what's going on. You take a chance, you start telling her, but you sense immediately when you've said too much: her eyes start to glaze over and you think she is probably regretting that she even asked the question. You end the conversation immediately, and then you're not sure who feels more ill-at-ease, you or her? The real kicker here is that sometimes I, the patient, end up comforting her, the "friend" because something I said has jarred her, or confused her, or made her start tearing up.
The reality is that MOST people DON'T understand this life of mine as a stage IV breast cancer patient. They don't have to, and it's not their fault, either. It's something that you have to experience to "get." (And I don't wish that on anyone!) I know people who, by some strange phenomena, have lived to adulthood without ever having had cancer touch their lives in any way. They know nothing about it. Some are curious and some are not. I appreciate when they tell me that they don't even know what to say, because they've never known anyone with cancer. God bless them! And, wow.
Others (most people, I think) have had limited exposure to cancer patients, so what they do know is, well, limited. Most folks know this: you get cancer, you get chemotherapy, you lose your hair, and when your treatment is over, your hair grows back and you live happily ever after. What most folks DON'T understand, is how someone can be on an "endless" treatment regimen. Back when I was a newbie stage IV cancer patient, I myself didn't even "get" this, because I hadn't yet experienced it. It's uncommon. Over the holidays, my hair grew back some. (it was great!) But when I got sick again, and lost my hair again, I heard someone say "I thought she was finished with her treatments!" Anyway, I'm not sure how I got off on this tangent! Guess it's just a peeve of mine. Guess it can be hard to grasp how someone could receive cancer treatment, continuously, for over 15 years, like me!
So ... the latest. I'm awaiting insurance approval to begin a new chemotherapy combo (Gem-Carbo) as soon as possible. The Ixempra was not working, as evidenced by my very, very ugly CT scan from last week. Had my second thoracentesis done yesterday which, sadly, I looked forward to all weekend! How pitiful is that that I could hardly wait to have excess fluid ("very large pleural effusion") drained from my lung?? My first thoracentesis back in October offered me so much relief from the incessant coughing and difficulty swallowing & sleeping, that I couldn't help being hopeful that it would work the same way this time. Perhaps it's too early to tell.
Very, very nervous about yet another chemo drug. And I'm really getting tired of it all. I'm worn out!
Tuesday, January 27, 2015
Latest News
Well, hello! Cycle #2 of Ixempra was 4 days ago. This cycle is already proving to be better than #1. Day 4 of cycle #1 consisted of an emergency trip to the clinic for an infusion of IV fluids. Then, for the following four consecutive and highly inconvenient days I had to make a trip to the clinic to receive injections of Neupogen for low white blood cell counts. I felt like you-know-what, and I allowed myself to get dehydrated by not eating much or adequately drinking ... which then made me feel even worse, i.e. lightheaded and weak(er). This time I've willed myself to eat and drink, even though my appetite is poor and I don't thirst much. Although ... me thinks it's not all in my head or my will, for that matter.
My doctor used the phrase "tumor burden," which I understand to be the body being overwhelmed with the cancer inside, thus causing my many symptoms. I believe it played a large part in my body's struggle to handle the first cycle of chemotherapy. What I was experiencing were the effects of chemo ON TOP OF the effects of cancer.
Amazingly, I could sense some improvement in my chest pressure/pain less than two weeks after my first Ixempra infusion. Could it possibly be?? Talk about HOPE! Slowly I was able to eat a little more, and gradually I increased my activity level as well. In the past I've referred to myself as the Energizer bunny, because I seem to just keep going and going. I keep getting clear messages that God isn't finished with me yet. Is this, perhaps, another one of those times? Guess I may be getting ahead of myself. In any event, if I AM the Energizer bunny, I'm on a sluggish, "low-battery" pace!
Dr. C was thrilled to hear of my improvements. When I communicated my surprise at how quickly Ixempra seemed to work, she said she was not surprised. That when it works, it works quickly. Woohooooo!
My labs were good to go. Go on to cycle #2, that is. The only lab value that wasn't available yet was my tumor marker, the CA 15-3. I was so anxious to see how far down that baby had moved! Dr. C assured me she would message me when the result was in. The message arrived just before dinner. I quickly opened it, but the results weren't what I had hoped for. In fact, it was shocking. I was crushed, and not just in spirit. I felt an immediate drop, a heaviness, in my chest. Tears welled up. It was 47, up from 28. It hit me hard, I suppose, because I expected it to have gone down (at least a little!) I'm thinking, how could this be? Am I really feeling better?
The message containing the tumor marker result also came with an explanation from Dr. C. She explained that an elevation sometimes happens after an initial chemo infusion. I desperately clung to that! And then I hit the internet, of course. It turns out that what she said was true ... imagine that! I was, however, more pleased with the more in-depth discussions online than the doctor's one sentence. But such is the nature of "messaging" as opposed to a face-to-face conversation. What I found was that the level could go up if a cancer is "very sensitive" to a certain chemotherapy treatment. The chemo causes many cancer cells to die and release large amounts of the marker into the blood, which will raise the level of the tumor marker for a short time. Now we're talking!!
The plan is to re-check the CA 15-3 in a few weeks. If still elevated, I'll be scanned (with the usual CT's of chest, abdomen and pelvis.) But hopefully, prayerfully, the tumor marker level will correlate more closely to how I'm feeling, which is not too shabby. Prayers are working, I truly believe that ... I'd like to see some objective evidence of it, as well, in the form of improved scans and labs. No matter what happens, I know I and my family are in God's hands.
ADDENDUM: I feel the need to clarify "not too shabby." In this case, it's a very relative term! I am home all day, and I feel a sense of accomplishment when I complete even the menial of tasks, such as paying a bill. Or making a phone call. Or bathing. Or going through mail. One recent day I moved a few photo albums from my bedroom onto the bookshelf in another room. Wowza! I missed church Sunday because I wore myself out taking a shower. (Note to self: Next week, shower the night before church.) I now only take pain medication at bedtime. I now only take nausea medication about once a day. I am proud of myself when I have a "normal" poop. I am even happier when I poop every day. These are improvements, people! Ahh, the little things.
My doctor used the phrase "tumor burden," which I understand to be the body being overwhelmed with the cancer inside, thus causing my many symptoms. I believe it played a large part in my body's struggle to handle the first cycle of chemotherapy. What I was experiencing were the effects of chemo ON TOP OF the effects of cancer.
Amazingly, I could sense some improvement in my chest pressure/pain less than two weeks after my first Ixempra infusion. Could it possibly be?? Talk about HOPE! Slowly I was able to eat a little more, and gradually I increased my activity level as well. In the past I've referred to myself as the Energizer bunny, because I seem to just keep going and going. I keep getting clear messages that God isn't finished with me yet. Is this, perhaps, another one of those times? Guess I may be getting ahead of myself. In any event, if I AM the Energizer bunny, I'm on a sluggish, "low-battery" pace!
Dr. C was thrilled to hear of my improvements. When I communicated my surprise at how quickly Ixempra seemed to work, she said she was not surprised. That when it works, it works quickly. Woohooooo!
My labs were good to go. Go on to cycle #2, that is. The only lab value that wasn't available yet was my tumor marker, the CA 15-3. I was so anxious to see how far down that baby had moved! Dr. C assured me she would message me when the result was in. The message arrived just before dinner. I quickly opened it, but the results weren't what I had hoped for. In fact, it was shocking. I was crushed, and not just in spirit. I felt an immediate drop, a heaviness, in my chest. Tears welled up. It was 47, up from 28. It hit me hard, I suppose, because I expected it to have gone down (at least a little!) I'm thinking, how could this be? Am I really feeling better?
The message containing the tumor marker result also came with an explanation from Dr. C. She explained that an elevation sometimes happens after an initial chemo infusion. I desperately clung to that! And then I hit the internet, of course. It turns out that what she said was true ... imagine that! I was, however, more pleased with the more in-depth discussions online than the doctor's one sentence. But such is the nature of "messaging" as opposed to a face-to-face conversation. What I found was that the level could go up if a cancer is "very sensitive" to a certain chemotherapy treatment. The chemo causes many cancer cells to die and release large amounts of the marker into the blood, which will raise the level of the tumor marker for a short time. Now we're talking!!
The plan is to re-check the CA 15-3 in a few weeks. If still elevated, I'll be scanned (with the usual CT's of chest, abdomen and pelvis.) But hopefully, prayerfully, the tumor marker level will correlate more closely to how I'm feeling, which is not too shabby. Prayers are working, I truly believe that ... I'd like to see some objective evidence of it, as well, in the form of improved scans and labs. No matter what happens, I know I and my family are in God's hands.
ADDENDUM: I feel the need to clarify "not too shabby." In this case, it's a very relative term! I am home all day, and I feel a sense of accomplishment when I complete even the menial of tasks, such as paying a bill. Or making a phone call. Or bathing. Or going through mail. One recent day I moved a few photo albums from my bedroom onto the bookshelf in another room. Wowza! I missed church Sunday because I wore myself out taking a shower. (Note to self: Next week, shower the night before church.) I now only take pain medication at bedtime. I now only take nausea medication about once a day. I am proud of myself when I have a "normal" poop. I am even happier when I poop every day. These are improvements, people! Ahh, the little things.
Monday, January 12, 2015
Update
On January 2, 2015, I had my first infusion of Ixempra. There was an issue with the proposed clinical trial in that my starting it would be delayed due to some changes in the principal investigator (doctor in charge of trial) and the trial drug's dosage. Dr. Coscio was of the opinion that I did not have time to wait for the clinical trial to get back underway. So, new chemo it is! Oh wait, didn't mean to sound that excited about it. Well, maybe I was ... in a way ... at first. But now that I'm IN it, NOT SO MUCH.
I was able to squeeze in a family visit to Louisiana between Christmas and New Year's. I ate at almost all of my favorite restaurants, spent time with family and even saw some old family friends I hadn't seen in some time. We reminisced over old pictures, and we talked and laughed a lot. My mom made some of my favorite meals, just for me. I didn't have much of an appetite, but I ate smaller portions to enjoy all the variety. (Actually, I did pretty darn good on my mom's fried shrimp ... which I paid for, later!) You know it's bad when I passed completely on beignets from Café du Monde!
It was a needed trip, and I was intentional in my planning of it. My coughing, fever, feelings of fullness, and increasing chest pressure hinted at what was to come. I wasn't well. I was starting to wonder if everything I did, everything I ate, every place I visited, every conversation I had ... was going to be "the last."
I've been living with this chronic, deadly disease, and its many different treatments, for many years. But only within the past year has the disease started to cause me problems in a noticeable, physical way. I've had subtle respiratory symptoms before, over the years, during two occurrences of pleural effusions. These resolved with the success of new treatments/chemos. There is no cure for cancer, so "successful" treatments are always temporary. Some last longer than others. Those are the good ones, the ones you wish would work forever. Some caused side effects that I could live with, some caused side effects that were simply unbearable. Such is the progression of stage IV cancer. If a drug works, you stay on it until (a) it no longer works, or (b) the severity of its side effects outweigh its benefits.
Last Spring I needed radiation to the spine due to tumor growth into the epidural space, causing leg weakness. The Summer was the season of severe neuropathy caused by the chemotherapy I was receiving. So severe that I could hardly walk, get in and out of cars, or feed myself. The Fall was when complications of lung metastasis necessitated the removal of nearly 2 liters of fluid from the lung. This fluid was causing incessant coughing, shortness of breath and difficulty swallowing, eating and drinking ... which led to muscle/weight loss unlike any I've experienced. All the while, scans and tumor markers showed slow yet steady progression of the cancer, despite attempts with multiple drugs to slow or stop it. Some areas might be stable, while others showed slight growth, and still others saw brand new tumor.
So where am I now? I'm anxiously waiting for the new chemo to be effective. The fluid in my lung has again increased (says the chest x-ray.) I feel an intense pressure from inside of my chest, pushing outward. When I lie down, I feel like there's a ton of bricks on my chest. Pain medicine helps, but it doesn't last all night, so I wake up with much discomfort. I'm not sure how much time the doctor intends to give this new drug to work.
In the meantime, we have shed a lot of tears, and we worry about the coming days, weeks, and months. It's hard on the whole family, especially Danny, when I'm weakened and laid up. I pray a lot for him and the kids. He is having to do everything in addition to caring for me. The past 10 days feel like an eternity! Yes, I'm uncomfortable, but like I always say, I've got the easy part. I have the gift of knowing that I'll be with Jesus when my earthly time is up. It's my family who has to live under this cloud of cancer, and eventually, without me. Please pray for us!
I was able to squeeze in a family visit to Louisiana between Christmas and New Year's. I ate at almost all of my favorite restaurants, spent time with family and even saw some old family friends I hadn't seen in some time. We reminisced over old pictures, and we talked and laughed a lot. My mom made some of my favorite meals, just for me. I didn't have much of an appetite, but I ate smaller portions to enjoy all the variety. (Actually, I did pretty darn good on my mom's fried shrimp ... which I paid for, later!) You know it's bad when I passed completely on beignets from Café du Monde!
It was a needed trip, and I was intentional in my planning of it. My coughing, fever, feelings of fullness, and increasing chest pressure hinted at what was to come. I wasn't well. I was starting to wonder if everything I did, everything I ate, every place I visited, every conversation I had ... was going to be "the last."
I've been living with this chronic, deadly disease, and its many different treatments, for many years. But only within the past year has the disease started to cause me problems in a noticeable, physical way. I've had subtle respiratory symptoms before, over the years, during two occurrences of pleural effusions. These resolved with the success of new treatments/chemos. There is no cure for cancer, so "successful" treatments are always temporary. Some last longer than others. Those are the good ones, the ones you wish would work forever. Some caused side effects that I could live with, some caused side effects that were simply unbearable. Such is the progression of stage IV cancer. If a drug works, you stay on it until (a) it no longer works, or (b) the severity of its side effects outweigh its benefits.
Last Spring I needed radiation to the spine due to tumor growth into the epidural space, causing leg weakness. The Summer was the season of severe neuropathy caused by the chemotherapy I was receiving. So severe that I could hardly walk, get in and out of cars, or feed myself. The Fall was when complications of lung metastasis necessitated the removal of nearly 2 liters of fluid from the lung. This fluid was causing incessant coughing, shortness of breath and difficulty swallowing, eating and drinking ... which led to muscle/weight loss unlike any I've experienced. All the while, scans and tumor markers showed slow yet steady progression of the cancer, despite attempts with multiple drugs to slow or stop it. Some areas might be stable, while others showed slight growth, and still others saw brand new tumor.
So where am I now? I'm anxiously waiting for the new chemo to be effective. The fluid in my lung has again increased (says the chest x-ray.) I feel an intense pressure from inside of my chest, pushing outward. When I lie down, I feel like there's a ton of bricks on my chest. Pain medicine helps, but it doesn't last all night, so I wake up with much discomfort. I'm not sure how much time the doctor intends to give this new drug to work.
In the meantime, we have shed a lot of tears, and we worry about the coming days, weeks, and months. It's hard on the whole family, especially Danny, when I'm weakened and laid up. I pray a lot for him and the kids. He is having to do everything in addition to caring for me. The past 10 days feel like an eternity! Yes, I'm uncomfortable, but like I always say, I've got the easy part. I have the gift of knowing that I'll be with Jesus when my earthly time is up. It's my family who has to live under this cloud of cancer, and eventually, without me. Please pray for us!
Tuesday, December 9, 2014
Vacation, and moving on to new treatment
Many months ago, I booked us a family vacation in the mountains of Arkansas. At the time, I didn't know where I would be on my cancer journey, but I figured that if I didn't make the reservations, it would never happen. So glad I did! We took the long drive northward to Mount Magazine State Park and stayed in a mountainside cabin overlooking a beautiful valley. I was able to walk some of the short, easy trails, which I loved! Had this vacation been over the summer, during the peak of my severe neuropathy symptoms, I wouldn't have been able to do ANY trail walking, for sure! The timing was great. The elevation there was mild, and the trails we chose were relatively flat. So I could walk and breathe and all those good things! Danny and the kids did go out without me a couple of times, on some of the longer, higher hikes. Plus I admit I hold them down with my slowness. But it was all good. I wanted them to enjoy the area's beauty as we usually do when we visit a state or national park, and not have the family cancer patient limiting their pace or trail choices. Here are a few pictures:
Don't you just love when your kids show some interest in any of your interests?? Christa took the camera for most of this trip and came up with some great shots!
We drove home the day before Thanksgiving so we wouldn't miss the family feast. Good times with the whole extended Hellmers family!
The following week was my long-awaited (for me) scans to assess whether or not the latest treatment was working. This is always a stressful time. For any cancer patient! But I think it's getting worse for me. I start to think about it farther and farther in advance than previously. So much is riding on these results! And really, the results haven't been very good for some time now. It's been a while since I've had a treatment that worked. Even though I'm feeling pretty good, I worry. To make matters worse, my appointment to see the doctor was six days later. SIX days! I swear, I think that the person who does the scheduling sometimes forgets that the "medical record number" they are working on is actually a human being whose next course of treatment depends on the results of these tests ... which means our life can turn upside down, or not! Sorry I just think that waiting 6 days for test results is excessive.
But! I made it through the 6 days and saw Dr. Coscio yesterday. Danny and I both somehow knew that it would be time to move from Afinitor, Exemestane and Zolodex onto something else. Nothing we could quite pinpoint, although my cough has been increasing slightly. Gut feeling I guess. Maybe because I've been feeling so good, generally without treatment side effects, that we thought that it surely is not working well on the cancer. In any event, we were right.
My tumor marker (CA 15-3) went up again, and the sad little graph showed a steadily inclining line stretching over the last 6 months. A lesion on my liver is larger (2.4cm) and there are multiple, new liver lesions. The lung pleura still shows nodules, scar tissue, and expansion of metastases into the area near my heart and major blood vessels (excuse my lack of medical jargon precision here-- The doctor showed us these areas on the digital films, and I think my eyes were beginning to glaze over right about now.) The pleural effusion is still present, though not as large as 2 months ago, which was before the thoracentesis when they removed 2 liters of fluid. Some of the fluid is now "loculated," which means, at least how I understand it, that it's hardened and therefore is not drainable, and explains the very odd & irregular shape of my left lung. Ironically the right lung looks beautiful! Weird. The bone mets are stable. Nothing new there, except the report says I have a pathologic fracture on my T-12 vertebra and two left ribs. This I was unaware of. I always knew that with extensive bone metastasis, I was at risk for pathologic fracture. Well now I have some of my very own, although it's not noted if these are new findings or just uncharted old ones. Sigh...
I was given two options. I want to add here that THANK GOD I still have options! I know that there will come a day when they will have nothing more to offer me, but I'm not there yet. The first is a chemo called Ixempra. Given IV every three weeks over a 3-hour infusion, this would cause hair loss and make me fairly uncomfortable. The second is a clinical trial. The particular trial Dr. Coscio thinks I'm eligible for is a hormone therapy type of drug. It's for patients who have JUST FAILED on Afinitor and Exemestane -- hey that's me! And you can't have had any other treatments after failing that combo ... so if I took anything else now, I would no longer and never again be eligible for this clinical trial. The hormone types of therapies are generally better tolerated with less side effects than chemotherapies, plus many of them have worked for me in the past. So I am leaning toward the trial before the chemo. I will be getting an appointment with the doc in charge of the trial to get more information and see if I qualify. But that is where we are. I was told that it may take a couple of weeks to get going. Which is fine with me because I'm seeing a Christmas free of cancer treatment -- sounds good to me!
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| Me and the kids |
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| Wow! Gorgeous Fall foliage in the fog. |
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| Our cabin. Check out the views beyond. |
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| Picnic lunch spot |
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| My silly girls |
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| Christa spotted some color amid all the browns |
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| She has a really good eye! |
Don't you just love when your kids show some interest in any of your interests?? Christa took the camera for most of this trip and came up with some great shots!
We drove home the day before Thanksgiving so we wouldn't miss the family feast. Good times with the whole extended Hellmers family!
The following week was my long-awaited (for me) scans to assess whether or not the latest treatment was working. This is always a stressful time. For any cancer patient! But I think it's getting worse for me. I start to think about it farther and farther in advance than previously. So much is riding on these results! And really, the results haven't been very good for some time now. It's been a while since I've had a treatment that worked. Even though I'm feeling pretty good, I worry. To make matters worse, my appointment to see the doctor was six days later. SIX days! I swear, I think that the person who does the scheduling sometimes forgets that the "medical record number" they are working on is actually a human being whose next course of treatment depends on the results of these tests ... which means our life can turn upside down, or not! Sorry I just think that waiting 6 days for test results is excessive.
But! I made it through the 6 days and saw Dr. Coscio yesterday. Danny and I both somehow knew that it would be time to move from Afinitor, Exemestane and Zolodex onto something else. Nothing we could quite pinpoint, although my cough has been increasing slightly. Gut feeling I guess. Maybe because I've been feeling so good, generally without treatment side effects, that we thought that it surely is not working well on the cancer. In any event, we were right.
My tumor marker (CA 15-3) went up again, and the sad little graph showed a steadily inclining line stretching over the last 6 months. A lesion on my liver is larger (2.4cm) and there are multiple, new liver lesions. The lung pleura still shows nodules, scar tissue, and expansion of metastases into the area near my heart and major blood vessels (excuse my lack of medical jargon precision here-- The doctor showed us these areas on the digital films, and I think my eyes were beginning to glaze over right about now.) The pleural effusion is still present, though not as large as 2 months ago, which was before the thoracentesis when they removed 2 liters of fluid. Some of the fluid is now "loculated," which means, at least how I understand it, that it's hardened and therefore is not drainable, and explains the very odd & irregular shape of my left lung. Ironically the right lung looks beautiful! Weird. The bone mets are stable. Nothing new there, except the report says I have a pathologic fracture on my T-12 vertebra and two left ribs. This I was unaware of. I always knew that with extensive bone metastasis, I was at risk for pathologic fracture. Well now I have some of my very own, although it's not noted if these are new findings or just uncharted old ones. Sigh...
I was given two options. I want to add here that THANK GOD I still have options! I know that there will come a day when they will have nothing more to offer me, but I'm not there yet. The first is a chemo called Ixempra. Given IV every three weeks over a 3-hour infusion, this would cause hair loss and make me fairly uncomfortable. The second is a clinical trial. The particular trial Dr. Coscio thinks I'm eligible for is a hormone therapy type of drug. It's for patients who have JUST FAILED on Afinitor and Exemestane -- hey that's me! And you can't have had any other treatments after failing that combo ... so if I took anything else now, I would no longer and never again be eligible for this clinical trial. The hormone types of therapies are generally better tolerated with less side effects than chemotherapies, plus many of them have worked for me in the past. So I am leaning toward the trial before the chemo. I will be getting an appointment with the doc in charge of the trial to get more information and see if I qualify. But that is where we are. I was told that it may take a couple of weeks to get going. Which is fine with me because I'm seeing a Christmas free of cancer treatment -- sounds good to me!
Sunday, November 16, 2014
Update ... and here's to more birthdays!
Well it's been several weeks since my last post, and I am feeling better than I have in a long time! I seem to have more energy (although I do get worn out and short of breath on exertion.) I don't have any mouth sores, and the neuropathy symptoms have almost completely resolved. Of course, living with the gray cloud of cancer always hanging over me, I can't ignore the fact that I'm on a dose of Afinitor that's 50% less than originally prescribed. So I feel bad, for feeling so good. I feel as if I'm not doing everything I can to fight the cancer ... like some sort of failure as a cancer patient, not being able to tolerate the full dose. I communicated this (well, not in those words) with Dr. Coscio and she said "It's OK to feel good. Maybe you're feeling good because the cancer is improving." She can always find comforting words for me, even when I'm stressing!
Backtracking a bit, to bring you totally up to date ...
Once the thoracentesis was done it was over four weeks until my next appointment with Dr. Coscio... which seemed to me like an awful long time! In the meantime, the burning question I had about the thoracentesis needed to be addressed, so I took to the MDA messaging system. Why did my lung NOT re-expand after the procedure? Answer: Possibly because it had been squeezed for so long that it wouldn't readily expand back to "normal." Perhaps returning to chemo will help it heal, soften, and re-expand. Okay. I can accept that, but I still don't like it!
The follow-up thoracentesis was done two weeks after the first (still had not seen the doc.) The report noted that the pneumothorax had resolved, and that I had a "moderately large left pleural effusion." WHAAAAT?? I was so confused. If the pneumothorax had resolved, did that mean that my lung had re-expanded to fill the space? Or had more fluid filled said space? Since this report made no comparison to the previous x-rays done on the day of the thoracentesis, I wanted to know if this was a re-accumulation of fluid, or if some fluid was leftover in the pleural space, even with having the procedure done. Answer from Dr. Coscio: the area had filled with fluid again. :( NOT WHAT I WANTED TO HEAR!
This was very discouraging, to say the least. I had read that pleural effusions related to cancer are highly likely to recur, but I did not expect it to happen so quickly. But interestingly, I was feeling better. None of the symptoms I was having prior to the thoracentesis had recurred. Virtually no coughing, no fever, ease of breathing, etc. It didn't really make sense. You know me, I'm always trying to figure it all out! The doctor said that if I started having symptoms again, we would "address it." I presumed she meant by repeating the thora and/or changing chemo's.
Finally my doctor appointment day arrived. The four weeks between visits really seemed to stress me out. I guess because I had so many questions and worries. Even though we communicated by messaging, I guess I needed the face-to-face. Call me a needy patient! Under the circumstances I suppose my feelings were understandable. I updated her on how I was feeling, and my concerns about the quick recurrence of the pleural effusion. She showed me the "films," digitally, of course, on the computer screen. She also pulled up my previous CT of the chest, for comparison. Even though fluid had returned, the volume/size of it was nowhere near the size it had been right before the thoracentesis. That comforted me. It also explained why I wasn't having the symptoms I was having before. The pleural effusion, although recurrent, wasn't nearly as "large" as before.
My tumor marker (CA 15-3) had increased from 16.7 on 9/17 to 20.8 on 10/28. Dr. C felt that it was too early to tell if the new dose of Afinitor was working or not, based on the tumor marker alone. So, she advised me to continue on the Zolodex, Aromasin, and Afinitor, as previously planned. However, considering my concern about not doing enough to battle my cancer, and my request to possibly increase the dose a little, she said I could TRY to take 10mg once a week and 5mg the rest of days of the week. I agreed to try.
When she first prescribed the 50% reduction of Afinitor, I only had the 10mg tablets, and it was going to take at least a week to get the 5mg tabs in from my "specialty pharmacy." So I took a 10mg tab every other day until my 5mg tabs arrived. At around day 7 of this regimen, I began to develop a few mouth sores. Yikes! My 5mg's arrived on day 9, so since then I've been on 5mg per day (except for one day per week that I take 10mg.) The mouth sores have improved and disappeared! Yay! I tried to think of some way to explain all of this, but really, what purpose would that serve? I need to just go with it ... I'm in treatment, I'm feeling pretty good, with no mouth sores.
And now, I wait. Because of all the recent cancer-related activity, Dr. C decided to scan me with just a two month interval instead of the usual three. I'm scheduled for the usual CT's, bone scan, and labs in the first week of December. Anxious to find out if the new dose is working!!
Meanwhile ... I just celebrated another birthday! Who cares what the number is, the fact is, I just celebrated another birthday! I'm doing everything I'm capable of doing, and trying to live life to the fullest. My life's not perfect, by far, but at least I'm here to live it. As 2014 is winding down, it occurred to me that 2-3 times this year, I thought I was nearing the end of my life. But each time, God pulled me out and said "Nope. It's not your time to go yet." It was just not His will for my life to be over here on earth.
Sooooo, here's to more birthdays!
Backtracking a bit, to bring you totally up to date ...
Once the thoracentesis was done it was over four weeks until my next appointment with Dr. Coscio... which seemed to me like an awful long time! In the meantime, the burning question I had about the thoracentesis needed to be addressed, so I took to the MDA messaging system. Why did my lung NOT re-expand after the procedure? Answer: Possibly because it had been squeezed for so long that it wouldn't readily expand back to "normal." Perhaps returning to chemo will help it heal, soften, and re-expand. Okay. I can accept that, but I still don't like it!
The follow-up thoracentesis was done two weeks after the first (still had not seen the doc.) The report noted that the pneumothorax had resolved, and that I had a "moderately large left pleural effusion." WHAAAAT?? I was so confused. If the pneumothorax had resolved, did that mean that my lung had re-expanded to fill the space? Or had more fluid filled said space? Since this report made no comparison to the previous x-rays done on the day of the thoracentesis, I wanted to know if this was a re-accumulation of fluid, or if some fluid was leftover in the pleural space, even with having the procedure done. Answer from Dr. Coscio: the area had filled with fluid again. :( NOT WHAT I WANTED TO HEAR!
This was very discouraging, to say the least. I had read that pleural effusions related to cancer are highly likely to recur, but I did not expect it to happen so quickly. But interestingly, I was feeling better. None of the symptoms I was having prior to the thoracentesis had recurred. Virtually no coughing, no fever, ease of breathing, etc. It didn't really make sense. You know me, I'm always trying to figure it all out! The doctor said that if I started having symptoms again, we would "address it." I presumed she meant by repeating the thora and/or changing chemo's.
Finally my doctor appointment day arrived. The four weeks between visits really seemed to stress me out. I guess because I had so many questions and worries. Even though we communicated by messaging, I guess I needed the face-to-face. Call me a needy patient! Under the circumstances I suppose my feelings were understandable. I updated her on how I was feeling, and my concerns about the quick recurrence of the pleural effusion. She showed me the "films," digitally, of course, on the computer screen. She also pulled up my previous CT of the chest, for comparison. Even though fluid had returned, the volume/size of it was nowhere near the size it had been right before the thoracentesis. That comforted me. It also explained why I wasn't having the symptoms I was having before. The pleural effusion, although recurrent, wasn't nearly as "large" as before.
My tumor marker (CA 15-3) had increased from 16.7 on 9/17 to 20.8 on 10/28. Dr. C felt that it was too early to tell if the new dose of Afinitor was working or not, based on the tumor marker alone. So, she advised me to continue on the Zolodex, Aromasin, and Afinitor, as previously planned. However, considering my concern about not doing enough to battle my cancer, and my request to possibly increase the dose a little, she said I could TRY to take 10mg once a week and 5mg the rest of days of the week. I agreed to try.
When she first prescribed the 50% reduction of Afinitor, I only had the 10mg tablets, and it was going to take at least a week to get the 5mg tabs in from my "specialty pharmacy." So I took a 10mg tab every other day until my 5mg tabs arrived. At around day 7 of this regimen, I began to develop a few mouth sores. Yikes! My 5mg's arrived on day 9, so since then I've been on 5mg per day (except for one day per week that I take 10mg.) The mouth sores have improved and disappeared! Yay! I tried to think of some way to explain all of this, but really, what purpose would that serve? I need to just go with it ... I'm in treatment, I'm feeling pretty good, with no mouth sores.
And now, I wait. Because of all the recent cancer-related activity, Dr. C decided to scan me with just a two month interval instead of the usual three. I'm scheduled for the usual CT's, bone scan, and labs in the first week of December. Anxious to find out if the new dose is working!!
Meanwhile ... I just celebrated another birthday! Who cares what the number is, the fact is, I just celebrated another birthday! I'm doing everything I'm capable of doing, and trying to live life to the fullest. My life's not perfect, by far, but at least I'm here to live it. As 2014 is winding down, it occurred to me that 2-3 times this year, I thought I was nearing the end of my life. But each time, God pulled me out and said "Nope. It's not your time to go yet." It was just not His will for my life to be over here on earth.
Sooooo, here's to more birthdays!
Wednesday, October 8, 2014
Adventures of a Stage IV Cancer Patient
Soooo, it turns out that the feelings of lung improvement (cough, etc) and ability to eat more was a very short-lived phenomena. :( It lasted maybe about a week before I started having severe indigestion again. I always felt full, even if it had been hours or an entire day since I last ate. One day, I had a donut for breakfast and I swear, I burped that donut the rest of the day! The most uncomfortable thing was "the growling." This was happening before and I thought it went away. But I've figured out that it went away only because I basically stopped eating. As soon as began eating food again, "the growling" returned. Danny called this the "bear in my throat." That's what it sounded like! Barely audible to others when my mouth was closed, the growling bear was quite embarrassing and rather loud when my mouth was opened, such as during conversation! Weird!! So the eating had to stop. Nothing sounded good, and it felt like nothing was going down. I struggled to even take in liquids, although liquids went down much easier than any sort of solid food. More weight loss ensued.
I had also just told my doctor that I thought my coughing had improved, and I was no longer running a low grade fever. No sooner had I said that, when it all started coming back. I was having to take a sleep aid, nightly, (which I don't like to do!) just to get some sleep. It took me a while to "settle down" once I got into bed. Laying down would induce a lot of coughing and shortness of breath. I was only comfortable in a very specific position. Not on either side because I couldn't breathe well. Not on the back either. Somewhere in between I'd have to find that just right position where all was good. Then I'd just hope to fall asleep fast and stay asleep all night (thank you, Ambien CR.)
CT scans of the chest, abdomen and pelvis were done, as well as a bone scan. The 5 days between scans and my doctor appointment were excruciatingly long this time, because I knew it wouldn't be good. Based on how I was feeling, my hopes of the 2 drugs working had faded.
I gave the nurse and doctor a quick run-down of the symptoms having returned, and of course they noted my additional weight loss. Dr. C. showed me the CT scan. The pleural effusion (fluid around the lung) had increased significantly (up from "large" on the previous scan.) There was so much fluid, in fact, that my lung was squeezed down to a very small version of itself. There was way more fluid than lung, to say the least! Additionally, the fluid was pushing my esophagus over to the other side of my chest, actually turning it to a direction it doesn't normally go and causing it to be KINKED! It was no wonder that I couldn't eat!! Other findings included enlarging nodules in the lung and new & enlarging nodules in the liver. :( But the bone mets were stable ... yay?!
Dr. C. recommended immediate treatment change, preferably to an IV chemo that would work quickly. She was especially concerned about my weight loss and inability to eat. She mentioned me having the lung fluid drained (thoracentesis) but recalled that I wasn't too keen on the idea. Prior to this appointment, Danny & I had discussed that perhaps I should have it done because the coughing had gotten so severe and frequent -- basically non-stop. I told Dr. C this and she said if I agreed to the thoracentesis, we could go with the previous plan of getting back on Afinitor, this time at a lower dose to try to stave off the mouth sores. This is the plan we chose.
The thoracentesis was scheduled for the following morning. I finally took my Mom up on her multiple offers of coming over to help. I asked if she could come that very evening, and she said of course, dropped everything she was doing and caught a flight from N.O. to Houston. She's the best! We definitely needed the help!
With breast cancer awareness month, our busy season, in full swing at The Pink Ribbon Shop, Danny simply couldn't miss yet another day of work in the same week. Based on last year's dismal sales, we did not bring in extra staff this year to help with order filling. It was a rough year of scrimping and saving in every way we could. We really did not want Danny to have to go get another temporary position in the Spring like last year, so we thought that he and Lisa, our only other employee still with us (thank God for her!) could handle orders if sales were about like the previous year's, ultimately saving us tons in payroll. However, this year we have been super-blessed with sales through the roof ... which is amazing and awesome and thank you God, but very difficult to manage with a limited staff and my increasingly demanding healthcare needs, not to mention the "normal" demands of a family with three busy, active children.
My mom and I drove the hour to the Woodlands for my thoracentesis appointment. I had asked Dr. C. about sedation, because I was very afraid of this procedure -- she assured me that I would be sedated. But this was not to be. When they took me into the room, I was informed that they don't provide sedation for a thoracentesis, just a local anesthetic. This really freaked me out! I briefly considered backing out (and actually told the nurse that I no longer wanted to have it done,) but knew that it was necessary. I "put on my big girl panties" and agreed to proceed.
I was put in a room, on a stretcher, where I waited for a couple of hours! Good thing I called my mom in, so I wasn't alone all that time. We always have fun together. There was a table in the room that was set up for THE PROCEDURE. An ultrasound machine was at the bedside. Nearby there were 2 large glass containers. I jokingly said to my mom "I bet I can fill those," trying to make light of my scary situation. At some point it was getting so late that I had my mom go call Danny and others to update them that nothing was happening yet. While I was left alone, I took the time to pray for God to provide a competent, skilled doctor to perform this invasive procedure that involved placing a needle between my ribs and into my pleural space to drain the fluid.
Eventually they asked my mom to leave and the room seemed to fill with people. A man, who I assumed was the doctor to perform the "thora" as they called it, walked in and started asking me questions. He did not introduce himself! Not cool! I hate when doctors think they are above me. You know, doctors put their pants on one leg at a time, just like the rest of us! So, I asked him if he's ever done this procedure before. I said it in a joking way, but I'm pretty sure he was shocked. He was an older gentleman, and Dr. C said he was great, so I didn't doubt that he was very experienced. Then I said, "What was your name, doctor?" I tried to keep it light, yet send a message... Hey, you're not God, the least you can do is introduce yourself to your patient. Maybe he got it, maybe he didn't. But I tried.
The nurse who originally told me that there would be no sedation stood right in front of me (I was sitting on the side of the bed, legs hanging) and allowed me to hold her hand. I'm pretty sure I squeezed the life out of it! I was grateful for her caring attitude and encouraging words. Before starting, the doc placed the ultrasound transducer on my side/back to take a look at where he would be placing the needle. He told me that it looked like I had "quite a bit" of fluid in that lung. He asked if I'd had any shortness of breath. I said "Only when I DO anything." He and the nurse talked to me throughout the procedure (well moreso the nurse, but he didn't do too bad!) and so I was kept up with what was happening and what to expect. The local anesthetic injection stung a little. Not too bad! Then he said I'd feel a little pressure, but actually I didn't feel anything. He then said "Ok, you're draining." I looked to my side to see one of the glass containers filling with a rust-colored thin liquid. I didn't even feel the thoracentesis needle! Woohooooo!
After a minute or two ... not really sure of the time ... I felt an odd sensation just left of my sternum, then I started coughing. And coughing, and coughing. They said I could expect this as the fluid was drained and the lung re-expanded. It was overwhelmingly involuntary and seemed to go on way too long. The nurse assured me this was normal. Then they re-checked the fluid level with the ultrasound transducer and, I suppose, concluded that enough was drained out. The tube was removed. Being a former nurse, and that I had seen the glass containers beforehand, I was really curious to know just how much fluid was removed. Even my joke about being able to fill the containers couldn't prepare me for the fact that I actually DID fill both of them. A total of 1900ml, nearly 2 LITERS of fluid was removed from my left lung. Oh. Em. Gee.
It's no wonder that in the preceding months, I "didn't feel well"!!!
A chest x-ray was done immediately after the thora, per protocol to check for a pneumothorax, a potentially dangerous outcome. To my surprise, they informed me that my lung had not re-expanded, and so they would repeat the chest x-ray after a couple of hours. I was still coughing some, so that didn't make any sense to me since I was told that the coughing would be due to the lung re-expanding. In any event, I was to be there on the stretcher for at least another 2 hours. This turned into 4+ hours because each successive chest x-ray showed the same thing: failure of my lung to re-expand. Disappointing! I was hoping for a big fix with this nasty procedure.
It wasn't until later that evening that I realized that God had answered my prayer ... precisely! I definitely had a competent, skilled physician who did an excellent job at not hurting me during the procedure, and I had no complications (at least none that could be attributed to his performance.) I did NOT pray for a super-friendly, down-to-earth doctor who would wow me with his bedside manner. Interesting!!
My mom drove us home, and I rested the rest of the evening, and I felt pretty good, just kind of worn out from the day's events and stresses. The next day, I was amazed to discover that the growling, the "bear in my throat," was completely gone! I speculate that I may have actually "felt" my esophagus straightening out as the pressure of fluid that was displacing it was removed. I no longer felt like I was full. It was a definite change for the better, and so quickly, too! Amazing.
Additionally, laying on my back was no longer uncomfortable. I didn't feel a pressure on my chest or have difficulty settling into bed and finding a comfortable position. I was breathing much easier when lying down ... and I could breathe pretty well from ANY position. Leaning over or bending down to pick up stuff (which, as a mom, I seem to do an awful lot of!) no longer induced a cough.
I still had a cough, which both concerned and disappointed me. But it had a different quality to it, and overall I felt better. In fact, after having the pleural effusion "tapped," I realized how BAD I had been feeling for some time. I guess it came on so gradually, that I had just grown accustomed to it and didn't realize how sick I actually felt. When you have 2 extra liters of pleural fluid ... it doesn't feel good! Just sayin'!
It's been a week since my thoracentesis. My appetite is improving, and I am able to eat more than before, but I seem to be having trouble gaining any weight. I FEEL like I am eating a TON, but I'm actually eating small portions. Small portions of a bigger variety of foods, but small portions nonetheless. I even went OUT to eat over the weekend. So delicious! And so I thought I was done with Boost supplements, but it looks like I still need them. I finally broke down and ordered the VHC Boost (very high calorie) because as much as I think I am eating, it is still not enough and I am still very thin. I now weigh less than my teenaged daughters, and it is not a good look, trust me.
My mom stayed in town from Wednesday through Sunday. During that time, as I said before, we went out to eat, and we also went to watch my girls at the high school football game. My oldest daughter and her crew also came! Fun! So thankful for all I'm still able to do, even though I wear out quicker and easier than ever. Here are some pics from my fab weekend!
I started back on Afinitor (at a reduced dose of 50%) 6 days ago. Yesterday, I developed a single mouth sore on the inside of my bottom lip. I'm so scared that they will take over my mouth (and life) again. And yet, I am hopeful that maybe I'll just have one or two at a time. Since restarting Afinitor, I've been focusing on excellent and thorough mouth care, ie rinsing and/or brushing after meal and swishing with a baking soda mouthwash to try and nip the mouth sore issue in the bud before it gets out of hand! Please pray that I can keep it in check so I can continue this treatment ... and that the treatment works!
I had also just told my doctor that I thought my coughing had improved, and I was no longer running a low grade fever. No sooner had I said that, when it all started coming back. I was having to take a sleep aid, nightly, (which I don't like to do!) just to get some sleep. It took me a while to "settle down" once I got into bed. Laying down would induce a lot of coughing and shortness of breath. I was only comfortable in a very specific position. Not on either side because I couldn't breathe well. Not on the back either. Somewhere in between I'd have to find that just right position where all was good. Then I'd just hope to fall asleep fast and stay asleep all night (thank you, Ambien CR.)
CT scans of the chest, abdomen and pelvis were done, as well as a bone scan. The 5 days between scans and my doctor appointment were excruciatingly long this time, because I knew it wouldn't be good. Based on how I was feeling, my hopes of the 2 drugs working had faded.
I gave the nurse and doctor a quick run-down of the symptoms having returned, and of course they noted my additional weight loss. Dr. C. showed me the CT scan. The pleural effusion (fluid around the lung) had increased significantly (up from "large" on the previous scan.) There was so much fluid, in fact, that my lung was squeezed down to a very small version of itself. There was way more fluid than lung, to say the least! Additionally, the fluid was pushing my esophagus over to the other side of my chest, actually turning it to a direction it doesn't normally go and causing it to be KINKED! It was no wonder that I couldn't eat!! Other findings included enlarging nodules in the lung and new & enlarging nodules in the liver. :( But the bone mets were stable ... yay?!
Dr. C. recommended immediate treatment change, preferably to an IV chemo that would work quickly. She was especially concerned about my weight loss and inability to eat. She mentioned me having the lung fluid drained (thoracentesis) but recalled that I wasn't too keen on the idea. Prior to this appointment, Danny & I had discussed that perhaps I should have it done because the coughing had gotten so severe and frequent -- basically non-stop. I told Dr. C this and she said if I agreed to the thoracentesis, we could go with the previous plan of getting back on Afinitor, this time at a lower dose to try to stave off the mouth sores. This is the plan we chose.
The thoracentesis was scheduled for the following morning. I finally took my Mom up on her multiple offers of coming over to help. I asked if she could come that very evening, and she said of course, dropped everything she was doing and caught a flight from N.O. to Houston. She's the best! We definitely needed the help!
With breast cancer awareness month, our busy season, in full swing at The Pink Ribbon Shop, Danny simply couldn't miss yet another day of work in the same week. Based on last year's dismal sales, we did not bring in extra staff this year to help with order filling. It was a rough year of scrimping and saving in every way we could. We really did not want Danny to have to go get another temporary position in the Spring like last year, so we thought that he and Lisa, our only other employee still with us (thank God for her!) could handle orders if sales were about like the previous year's, ultimately saving us tons in payroll. However, this year we have been super-blessed with sales through the roof ... which is amazing and awesome and thank you God, but very difficult to manage with a limited staff and my increasingly demanding healthcare needs, not to mention the "normal" demands of a family with three busy, active children.
My mom and I drove the hour to the Woodlands for my thoracentesis appointment. I had asked Dr. C. about sedation, because I was very afraid of this procedure -- she assured me that I would be sedated. But this was not to be. When they took me into the room, I was informed that they don't provide sedation for a thoracentesis, just a local anesthetic. This really freaked me out! I briefly considered backing out (and actually told the nurse that I no longer wanted to have it done,) but knew that it was necessary. I "put on my big girl panties" and agreed to proceed.
I was put in a room, on a stretcher, where I waited for a couple of hours! Good thing I called my mom in, so I wasn't alone all that time. We always have fun together. There was a table in the room that was set up for THE PROCEDURE. An ultrasound machine was at the bedside. Nearby there were 2 large glass containers. I jokingly said to my mom "I bet I can fill those," trying to make light of my scary situation. At some point it was getting so late that I had my mom go call Danny and others to update them that nothing was happening yet. While I was left alone, I took the time to pray for God to provide a competent, skilled doctor to perform this invasive procedure that involved placing a needle between my ribs and into my pleural space to drain the fluid.
Eventually they asked my mom to leave and the room seemed to fill with people. A man, who I assumed was the doctor to perform the "thora" as they called it, walked in and started asking me questions. He did not introduce himself! Not cool! I hate when doctors think they are above me. You know, doctors put their pants on one leg at a time, just like the rest of us! So, I asked him if he's ever done this procedure before. I said it in a joking way, but I'm pretty sure he was shocked. He was an older gentleman, and Dr. C said he was great, so I didn't doubt that he was very experienced. Then I said, "What was your name, doctor?" I tried to keep it light, yet send a message... Hey, you're not God, the least you can do is introduce yourself to your patient. Maybe he got it, maybe he didn't. But I tried.
The nurse who originally told me that there would be no sedation stood right in front of me (I was sitting on the side of the bed, legs hanging) and allowed me to hold her hand. I'm pretty sure I squeezed the life out of it! I was grateful for her caring attitude and encouraging words. Before starting, the doc placed the ultrasound transducer on my side/back to take a look at where he would be placing the needle. He told me that it looked like I had "quite a bit" of fluid in that lung. He asked if I'd had any shortness of breath. I said "Only when I DO anything." He and the nurse talked to me throughout the procedure (well moreso the nurse, but he didn't do too bad!) and so I was kept up with what was happening and what to expect. The local anesthetic injection stung a little. Not too bad! Then he said I'd feel a little pressure, but actually I didn't feel anything. He then said "Ok, you're draining." I looked to my side to see one of the glass containers filling with a rust-colored thin liquid. I didn't even feel the thoracentesis needle! Woohooooo!
After a minute or two ... not really sure of the time ... I felt an odd sensation just left of my sternum, then I started coughing. And coughing, and coughing. They said I could expect this as the fluid was drained and the lung re-expanded. It was overwhelmingly involuntary and seemed to go on way too long. The nurse assured me this was normal. Then they re-checked the fluid level with the ultrasound transducer and, I suppose, concluded that enough was drained out. The tube was removed. Being a former nurse, and that I had seen the glass containers beforehand, I was really curious to know just how much fluid was removed. Even my joke about being able to fill the containers couldn't prepare me for the fact that I actually DID fill both of them. A total of 1900ml, nearly 2 LITERS of fluid was removed from my left lung. Oh. Em. Gee.
It's no wonder that in the preceding months, I "didn't feel well"!!!
A chest x-ray was done immediately after the thora, per protocol to check for a pneumothorax, a potentially dangerous outcome. To my surprise, they informed me that my lung had not re-expanded, and so they would repeat the chest x-ray after a couple of hours. I was still coughing some, so that didn't make any sense to me since I was told that the coughing would be due to the lung re-expanding. In any event, I was to be there on the stretcher for at least another 2 hours. This turned into 4+ hours because each successive chest x-ray showed the same thing: failure of my lung to re-expand. Disappointing! I was hoping for a big fix with this nasty procedure.
It wasn't until later that evening that I realized that God had answered my prayer ... precisely! I definitely had a competent, skilled physician who did an excellent job at not hurting me during the procedure, and I had no complications (at least none that could be attributed to his performance.) I did NOT pray for a super-friendly, down-to-earth doctor who would wow me with his bedside manner. Interesting!!
My mom drove us home, and I rested the rest of the evening, and I felt pretty good, just kind of worn out from the day's events and stresses. The next day, I was amazed to discover that the growling, the "bear in my throat," was completely gone! I speculate that I may have actually "felt" my esophagus straightening out as the pressure of fluid that was displacing it was removed. I no longer felt like I was full. It was a definite change for the better, and so quickly, too! Amazing.
Additionally, laying on my back was no longer uncomfortable. I didn't feel a pressure on my chest or have difficulty settling into bed and finding a comfortable position. I was breathing much easier when lying down ... and I could breathe pretty well from ANY position. Leaning over or bending down to pick up stuff (which, as a mom, I seem to do an awful lot of!) no longer induced a cough.
I still had a cough, which both concerned and disappointed me. But it had a different quality to it, and overall I felt better. In fact, after having the pleural effusion "tapped," I realized how BAD I had been feeling for some time. I guess it came on so gradually, that I had just grown accustomed to it and didn't realize how sick I actually felt. When you have 2 extra liters of pleural fluid ... it doesn't feel good! Just sayin'!
It's been a week since my thoracentesis. My appetite is improving, and I am able to eat more than before, but I seem to be having trouble gaining any weight. I FEEL like I am eating a TON, but I'm actually eating small portions. Small portions of a bigger variety of foods, but small portions nonetheless. I even went OUT to eat over the weekend. So delicious! And so I thought I was done with Boost supplements, but it looks like I still need them. I finally broke down and ordered the VHC Boost (very high calorie) because as much as I think I am eating, it is still not enough and I am still very thin. I now weigh less than my teenaged daughters, and it is not a good look, trust me.
My mom stayed in town from Wednesday through Sunday. During that time, as I said before, we went out to eat, and we also went to watch my girls at the high school football game. My oldest daughter and her crew also came! Fun! So thankful for all I'm still able to do, even though I wear out quicker and easier than ever. Here are some pics from my fab weekend!
I started back on Afinitor (at a reduced dose of 50%) 6 days ago. Yesterday, I developed a single mouth sore on the inside of my bottom lip. I'm so scared that they will take over my mouth (and life) again. And yet, I am hopeful that maybe I'll just have one or two at a time. Since restarting Afinitor, I've been focusing on excellent and thorough mouth care, ie rinsing and/or brushing after meal and swishing with a baking soda mouthwash to try and nip the mouth sore issue in the bud before it gets out of hand! Please pray that I can keep it in check so I can continue this treatment ... and that the treatment works!
Sunday, September 21, 2014
Enjoying food again! Anxiously awaiting next scans.
Well, I made it through another cancer-induced PIT! I feel somewhat silly for the extreme feelings of doom-and-gloom I get when I experience a traumatic event involving effects of the cancer or side effects of its treatment. It's easy to say that now that all of my mouth sores have healed (actually I still have one lingering sore on my tongue) and I am able to eat real food. But when I'm IN the moment, it's bad. It was a very trying time, for me and my whole family.
I wasn't able to eat, even soft foods, so my diet consisted of a liquid diet that included Boost and Boost (original and high-protein.) I had to medicate myself before I could even drink. I lost nearly 15 pounds, and let me tell you, I do NOT recommend this cancer diet. Most women I know would say that they'd like to lose a few pounds, myself included, but this has surely been the most unhealthy weight loss I've ever had. In what seems like a very short time, I've lost a large amount of muscle and fatty tissue, which has completely changed my figure. I have no butt! It's totally flat and I can't keep my pants from falling off, even the smaller-sized pants that I had to dig out of the shadows of my closet, because there is nothing to help hold them up. I've never been really big in that area, but have always had at least a little shape. No longer.
I'm concerned that I have cachexia, a wasting type of syndrome commonly seen in cancer patients. We've all seen someone with this. Their pants just droop off their butts, they are very thin and have little or no muscle mass. The body gets in the mode of breaking down tissue as opposed to building up and rebuilding. One of the bad things about this is that it can, once it gets set in motion, actually continue to occur, despite a return to adequate caloric and nutritional intake. This can eventually, directly or indirectly, lead to death. In my case I can see how it would it would hinder my body's ability to successfully deal with toxins (such as chemotherapy) and fight/heal side effects (such as mouth sores.) Scary!!!
I, however, am doing my part by eating ... a lot! Well as much as I am able -- I physically cannot eat as much at a time as I used to. Two plus weeks of little or no real food, then a diet limited to soft bland foods and lemon-less iced tea has driven this spicy-&-flavorful-food-loving Louisiana girl to her sad, sad breaking point! I'm thoroughly enjoy eating and have even gained a couple of pounds. In light of the past few weeks, this is a good thing. I don't believe I have ever in my life been happy about gaining a couple of pounds!
Soooo .... the plan, while I was deep in the throes of severe mucositis, was that I would stop Afinitor (the culprit! grrr!) for 2 weeks while the sores healed. Two weeks fell on a Saturday, and I had a follow-up appointment with Dr. C on the following Thursday. I took it upon myself to wait to restart until I discussed the options with Dr. C. It's been 3 months since my last scans, and in Dr. Kim's opinion, the scans needed to be looked at before I got back on Afinitor for a week or two after only being on it for a week in the first place. This was presented as an option by Dr. C, and I agreed. I'm scheduled for a CT of the chest, abdomen and pelvis, and a bone scan 4 days from today. Results will determine where we go from here, treatment-wise. Praying for tumor and pleural effusion shrinkage ... or at least stability! This would indicate that the 2 drugs (of the 3 prescribed at time of last treatment change) that I have remained on may be working even without the Afinitor. This would be great news for me! BUT, I am willing to give Afinitor another shot, despite the mouth sores. It would be at a reduced dose, so that may help. A lot to think about! A lot to worry and stress about! Trying to leave it all in God's hands ... I know he's got me, but this is not easy.
I wasn't able to eat, even soft foods, so my diet consisted of a liquid diet that included Boost and Boost (original and high-protein.) I had to medicate myself before I could even drink. I lost nearly 15 pounds, and let me tell you, I do NOT recommend this cancer diet. Most women I know would say that they'd like to lose a few pounds, myself included, but this has surely been the most unhealthy weight loss I've ever had. In what seems like a very short time, I've lost a large amount of muscle and fatty tissue, which has completely changed my figure. I have no butt! It's totally flat and I can't keep my pants from falling off, even the smaller-sized pants that I had to dig out of the shadows of my closet, because there is nothing to help hold them up. I've never been really big in that area, but have always had at least a little shape. No longer.
I'm concerned that I have cachexia, a wasting type of syndrome commonly seen in cancer patients. We've all seen someone with this. Their pants just droop off their butts, they are very thin and have little or no muscle mass. The body gets in the mode of breaking down tissue as opposed to building up and rebuilding. One of the bad things about this is that it can, once it gets set in motion, actually continue to occur, despite a return to adequate caloric and nutritional intake. This can eventually, directly or indirectly, lead to death. In my case I can see how it would it would hinder my body's ability to successfully deal with toxins (such as chemotherapy) and fight/heal side effects (such as mouth sores.) Scary!!!
I, however, am doing my part by eating ... a lot! Well as much as I am able -- I physically cannot eat as much at a time as I used to. Two plus weeks of little or no real food, then a diet limited to soft bland foods and lemon-less iced tea has driven this spicy-&-flavorful-food-loving Louisiana girl to her sad, sad breaking point! I'm thoroughly enjoy eating and have even gained a couple of pounds. In light of the past few weeks, this is a good thing. I don't believe I have ever in my life been happy about gaining a couple of pounds!
Soooo .... the plan, while I was deep in the throes of severe mucositis, was that I would stop Afinitor (the culprit! grrr!) for 2 weeks while the sores healed. Two weeks fell on a Saturday, and I had a follow-up appointment with Dr. C on the following Thursday. I took it upon myself to wait to restart until I discussed the options with Dr. C. It's been 3 months since my last scans, and in Dr. Kim's opinion, the scans needed to be looked at before I got back on Afinitor for a week or two after only being on it for a week in the first place. This was presented as an option by Dr. C, and I agreed. I'm scheduled for a CT of the chest, abdomen and pelvis, and a bone scan 4 days from today. Results will determine where we go from here, treatment-wise. Praying for tumor and pleural effusion shrinkage ... or at least stability! This would indicate that the 2 drugs (of the 3 prescribed at time of last treatment change) that I have remained on may be working even without the Afinitor. This would be great news for me! BUT, I am willing to give Afinitor another shot, despite the mouth sores. It would be at a reduced dose, so that may help. A lot to think about! A lot to worry and stress about! Trying to leave it all in God's hands ... I know he's got me, but this is not easy.
Tuesday, September 2, 2014
Quality of Life Issues
Despite using the baking soda mouthwash and "magic" mouthwash recommended by Dr. Coscio, the mouth sores continued to worsen and multiply. My weight has steadily decreased because I am unable to eat -- even drinking water is painful. I'm unable to talk due to the pain. I am using the "magic" mouthwash (a combination of Maalox, Benadryl and viscous xylocaine) before my "meals" which consist of Boost meal replacement drinks and the occasional vanilla yogurt cup. I was seen by Alicia, Dr. Coscio's APN, who advised me to discontinue the Afinitor for one week. According to my research, stomatitis (mouth sores) is Afinitor's most common side effect. She also prescribed Valtrex, an antiviral drug, because after examining my mouth she thought it looked more like a viral infection instead of stomatitis. Interesting.
Today is Day 5 on Valtrex. Thankfully I haven't seen any MORE sores (last count was 8,) but the existing ones don't seem to be going away. I'm in so much pain! And not just when I eat or drink or talk. So in addition to rinsing with magic mouthwash before meals and at bedtime, and the baking soda mouthwash in between, I am also taking a pain med. I try to limit this to twice a day because it makes me a little sleepy. It does help to take the edge off the pain.
Honestly, it's been really hard to keep my spirits up this week. I had to miss the girls' first football game (they're both in marching band,) and I didn't go to church either (where Bethany was playing drums.) I cancelled my parents' Labor Day weekend visit here because I'm in no shape or mood to have company in the house. Danny is doing everything around the house (thankfully!) because I feel like you-know-what. My days revolve around my mouthcare regimen and managing the pain. I'm feeling so discouraged that the sores aren't going away. The thought of starting back on Afinitor in 2 days makes my stomach turn. I don't want to live like this. In pain and unable to eat is not living. It's actually a pretty miserable existence. I don't want to be the mom who sits miserably on the sofa all day. I do still try to converse with the kids about their day, etc., but I sense that they're uncomfortable with me being so uncomfortable. And my sweet little David ... he asks me every day "Are you feeling better, Mom?" "Is the medicine helping, Mom?" He just wants to hear me say that I'm all better. It's heartbreaking.
Let's say the sores eventually do go away. I don't think I want to go back on Afinitor. The literature says that 67% of patients on it get mouth sores. Mine are so severe -- large and painful -- how can I possibly go back on the drug that most likely caused this very painful side effect? Similar to the neuropathy caused by Eribulin, it's a quality of life issue. However, with Eribulin, the decision to discontinue it was made easier by the fact that it wasn't really working on the cancer anyway. Afinitor hasn't even been given a chance to work. I am scheduled to be re-scanned in October. I was only on it for about a week before the mouth sores began. Deal with the mouth sores until then ... no way! And then if the scans are good ... live with mouth sores and inability to eat and talk, what, indefinitely? I should be hoping for good scan results, but not dreading living like this. I suppose it's a predicament only a fellow cancer patient can fully appreciate. To the healthy outsider, it is easy to think that I should just suck it up and tolerate the discomfort if the drug that's causing it affords me a longer life. But again I say, this is no way to live.
I am praying a lot, and I have lots of family and friends praying for me. Right now I'm being very specific by asking God to take these mouth sores away. I ask that you pray for the same!
Today is Day 5 on Valtrex. Thankfully I haven't seen any MORE sores (last count was 8,) but the existing ones don't seem to be going away. I'm in so much pain! And not just when I eat or drink or talk. So in addition to rinsing with magic mouthwash before meals and at bedtime, and the baking soda mouthwash in between, I am also taking a pain med. I try to limit this to twice a day because it makes me a little sleepy. It does help to take the edge off the pain.
Honestly, it's been really hard to keep my spirits up this week. I had to miss the girls' first football game (they're both in marching band,) and I didn't go to church either (where Bethany was playing drums.) I cancelled my parents' Labor Day weekend visit here because I'm in no shape or mood to have company in the house. Danny is doing everything around the house (thankfully!) because I feel like you-know-what. My days revolve around my mouthcare regimen and managing the pain. I'm feeling so discouraged that the sores aren't going away. The thought of starting back on Afinitor in 2 days makes my stomach turn. I don't want to live like this. In pain and unable to eat is not living. It's actually a pretty miserable existence. I don't want to be the mom who sits miserably on the sofa all day. I do still try to converse with the kids about their day, etc., but I sense that they're uncomfortable with me being so uncomfortable. And my sweet little David ... he asks me every day "Are you feeling better, Mom?" "Is the medicine helping, Mom?" He just wants to hear me say that I'm all better. It's heartbreaking.
Let's say the sores eventually do go away. I don't think I want to go back on Afinitor. The literature says that 67% of patients on it get mouth sores. Mine are so severe -- large and painful -- how can I possibly go back on the drug that most likely caused this very painful side effect? Similar to the neuropathy caused by Eribulin, it's a quality of life issue. However, with Eribulin, the decision to discontinue it was made easier by the fact that it wasn't really working on the cancer anyway. Afinitor hasn't even been given a chance to work. I am scheduled to be re-scanned in October. I was only on it for about a week before the mouth sores began. Deal with the mouth sores until then ... no way! And then if the scans are good ... live with mouth sores and inability to eat and talk, what, indefinitely? I should be hoping for good scan results, but not dreading living like this. I suppose it's a predicament only a fellow cancer patient can fully appreciate. To the healthy outsider, it is easy to think that I should just suck it up and tolerate the discomfort if the drug that's causing it affords me a longer life. But again I say, this is no way to live.
I am praying a lot, and I have lots of family and friends praying for me. Right now I'm being very specific by asking God to take these mouth sores away. I ask that you pray for the same!
Tuesday, August 26, 2014
The Latest from the Cancer Front
My long-awaited appointment with Dr. M to discuss getting on a clinical trial finally happened a couple of weeks ago! After a VERY long wait to see the doctor, what she presented was not what we expected. She said that currently there were no clinical trials available for me. :(
However, she did offer me a couple of options. The first option is another shot at hormone therapy -- a combination of three drugs. (1) Aromasin - I've taken it in the past and it didn't work.
(2) Afinitor - I have not taken this before. It's supposed to work in concert with Aromasin, somehow addressing cancer's resistance to hormone therapy.
(3) Zolodex - I took it for 4 years in conjunction with other hormone therapies. It's a monthly injection that works to shut down the ovaries' estrogen production. The thought is that even though I've not menstruated in several years (as a result of various breast cancer treatments,) my body may, in fact, actually be producing estrogen. If that is the case, then my cancer is having lots to "feed" on, hence its recent significant growth.
The second option is a chemo drug called Doxil. This is a potent chemotherapy drug closely related to Adriamycin which I received 14 years ago as part of my initial breast cancer treatment. Doxil is supposedly less cardiotoxic than Adriamycin, although the literature is very scary regarding its potential cardiac effects! It also has many other nasty side effects ... soooo, I decided to try the hormone therapy route again (as explained above.)
I was able to start Zolodex and Aromasin right away, but it took over two weeks to get my insurance to approve Afinitor, the most important part of the drug trio! So frustrating! I am finally taking all 3. Yay!
In the interim, I was stressing out because for over 6 weeks, I was on NO cancer treatment. This was a result of my week-long vacation, having to stop previous chemo because of severe neuropathy, and multiple brief waits for doctor appointments that just added up.
Additionally, for a few weeks I was running a low-grade fever of mostly 99's, 100's and the occasional 101. Often I would feel a little chilly, and that's when I would check my temperature and discover the fever. I had a nagging dry cough that was getting worse. I'm pretty sure the coughing was just as aggravating to my family as it was to me! I reported this to Dr. P and she ordered a chest x-ray and prescribed Cipro. She said that I may need to consider thoracentesis if the coughing didn't improve. I am not too keen on this!! It's an invasive procedure that involves placing a needle or tube into the pleural space of the lung and removing fluid. Yuck, yuckity, yuck yuck. And, what I've learned from my reading is that the drainage ALWAYS needs to be repeated in the cases of pleural effusion caused by malignancy. I don't want to start that!
The chest x-ray showed a large pleural effusion, which we already knew was there. BUT, the radiologist reported that an underlying infection could not be ruled out. A few days into the 7 days of Cipro, my fever shot up to the 102's and stayed there for a whole weekend. The coughing was so severe that I was actually considering having the effusion drained.
And then, the fever subsided! I guess the Cipro did its job and handled whatever infection I had. Dr. Kim thinks she had pneumonia! Since then, the coughing also has almost completely subsided. Go me!
I was beginning to feel pretty good, better than I had in a while. My foot is healing, although still a little sore when putting weight on it. The coughing, as I said, is much improved. My hair is growing back, which has perked my psyche up a bit. Unfortunately I recently began having severe indigestion which has decreased my appetite and prevented me from eating much. Guzzling the Mylanta, because I have a lot of gurgling in the throat/upper chest area. I've lost some weight, but not really in a good way. I'm beginning to look like an emaciated cancer patient! Also having periodic diarrhea, which can't be good. I'm a mess! At my nurse's recommendation, I spoke with a nutritionist who recommended small, frequent meals/snacks, and possibly adding a supplement such as Boost. I tried to increase my intake after that conversation, and I think it was starting to go well.
But then, about a week after starting Afinitor, I developed a mouth sore. Most of you know how painful that can be. For me, they usually just have to run their course before dissipating. But this time, the "course" seems never ending, and right now I am up to 6! Tongue, lip, under the tongue, both cheeks, and throat! Now I really really can't eat. I am rinsing with what the doctor recommended, but nothing seems to help. Well, actually, chocolate snowballs feel really good and don't burn at all! Chocolate malt from Sonic, not as good. But woman can't live on chocolate snowballs alone. It's getting to be a problem.
Wait ... didn't I just say that I was feeling better than I had in a while? In some ways that is true, and for that I am very thankful. I still have numbness in my hands and feet, but what has improved is the weakness and balance issues in my legs. I no longer require pushing the shopping cart to feel steady on my feet. I can walk from the car to the store without feeling like I'm simply not going to make it. I can go up steps and get into/out of cars without assistance. I was in a bad, bad place with severe neuropathy symptoms! If those areas have improved, I am hopeful that I will improve in other areas as well, such as being able to type, open things, and clip my own nails!
Sunday at church, parts of the sermon really spoke to me. It was on contentment. I know I have contentment issues. In Philippians 4, Paul speaks of being content regardless of your circumstances. Even though my circumstances seem rather grim at times, I still have a lot to be thankful for, so I must dwell on that!
However, she did offer me a couple of options. The first option is another shot at hormone therapy -- a combination of three drugs. (1) Aromasin - I've taken it in the past and it didn't work.
(2) Afinitor - I have not taken this before. It's supposed to work in concert with Aromasin, somehow addressing cancer's resistance to hormone therapy.
(3) Zolodex - I took it for 4 years in conjunction with other hormone therapies. It's a monthly injection that works to shut down the ovaries' estrogen production. The thought is that even though I've not menstruated in several years (as a result of various breast cancer treatments,) my body may, in fact, actually be producing estrogen. If that is the case, then my cancer is having lots to "feed" on, hence its recent significant growth.
The second option is a chemo drug called Doxil. This is a potent chemotherapy drug closely related to Adriamycin which I received 14 years ago as part of my initial breast cancer treatment. Doxil is supposedly less cardiotoxic than Adriamycin, although the literature is very scary regarding its potential cardiac effects! It also has many other nasty side effects ... soooo, I decided to try the hormone therapy route again (as explained above.)
I was able to start Zolodex and Aromasin right away, but it took over two weeks to get my insurance to approve Afinitor, the most important part of the drug trio! So frustrating! I am finally taking all 3. Yay!
In the interim, I was stressing out because for over 6 weeks, I was on NO cancer treatment. This was a result of my week-long vacation, having to stop previous chemo because of severe neuropathy, and multiple brief waits for doctor appointments that just added up.
Additionally, for a few weeks I was running a low-grade fever of mostly 99's, 100's and the occasional 101. Often I would feel a little chilly, and that's when I would check my temperature and discover the fever. I had a nagging dry cough that was getting worse. I'm pretty sure the coughing was just as aggravating to my family as it was to me! I reported this to Dr. P and she ordered a chest x-ray and prescribed Cipro. She said that I may need to consider thoracentesis if the coughing didn't improve. I am not too keen on this!! It's an invasive procedure that involves placing a needle or tube into the pleural space of the lung and removing fluid. Yuck, yuckity, yuck yuck. And, what I've learned from my reading is that the drainage ALWAYS needs to be repeated in the cases of pleural effusion caused by malignancy. I don't want to start that!
The chest x-ray showed a large pleural effusion, which we already knew was there. BUT, the radiologist reported that an underlying infection could not be ruled out. A few days into the 7 days of Cipro, my fever shot up to the 102's and stayed there for a whole weekend. The coughing was so severe that I was actually considering having the effusion drained.
And then, the fever subsided! I guess the Cipro did its job and handled whatever infection I had. Dr. Kim thinks she had pneumonia! Since then, the coughing also has almost completely subsided. Go me!
I was beginning to feel pretty good, better than I had in a while. My foot is healing, although still a little sore when putting weight on it. The coughing, as I said, is much improved. My hair is growing back, which has perked my psyche up a bit. Unfortunately I recently began having severe indigestion which has decreased my appetite and prevented me from eating much. Guzzling the Mylanta, because I have a lot of gurgling in the throat/upper chest area. I've lost some weight, but not really in a good way. I'm beginning to look like an emaciated cancer patient! Also having periodic diarrhea, which can't be good. I'm a mess! At my nurse's recommendation, I spoke with a nutritionist who recommended small, frequent meals/snacks, and possibly adding a supplement such as Boost. I tried to increase my intake after that conversation, and I think it was starting to go well.
But then, about a week after starting Afinitor, I developed a mouth sore. Most of you know how painful that can be. For me, they usually just have to run their course before dissipating. But this time, the "course" seems never ending, and right now I am up to 6! Tongue, lip, under the tongue, both cheeks, and throat! Now I really really can't eat. I am rinsing with what the doctor recommended, but nothing seems to help. Well, actually, chocolate snowballs feel really good and don't burn at all! Chocolate malt from Sonic, not as good. But woman can't live on chocolate snowballs alone. It's getting to be a problem.
Wait ... didn't I just say that I was feeling better than I had in a while? In some ways that is true, and for that I am very thankful. I still have numbness in my hands and feet, but what has improved is the weakness and balance issues in my legs. I no longer require pushing the shopping cart to feel steady on my feet. I can walk from the car to the store without feeling like I'm simply not going to make it. I can go up steps and get into/out of cars without assistance. I was in a bad, bad place with severe neuropathy symptoms! If those areas have improved, I am hopeful that I will improve in other areas as well, such as being able to type, open things, and clip my own nails!
Sunday at church, parts of the sermon really spoke to me. It was on contentment. I know I have contentment issues. In Philippians 4, Paul speaks of being content regardless of your circumstances. Even though my circumstances seem rather grim at times, I still have a lot to be thankful for, so I must dwell on that!
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